Mississippi Chris Sharp
Just glad to be here!
Just glad to be here! |
| I was diagnosed with Chronic Lymphocytic Leukemia in October of 2008. Below I write about some of my experiences with this new event in my life. As far as I am able, the facts as they pertain to my CLL are presented here, but they may be occluded behind the cloudy substance of human experience and recollection. If you want to learn more about the clinical mechanisms of CLL and the means by which it is treated, you will not learn much from this blog; I suggest you visit www.clltopics.org, which certainly has been and continues to be a beneficial site for me. There are other sites as well. There is a literal mountain of information for a CLL patient to misinterpret when he is searching the web for information, without any supervision; One can depress himself right to the point of death. Be careful what you read! Being thus warned, read on at your discretion. My goal here is to inform my near and distant family, friends, and fans, of my status, and to do that in a manner that is hopefully an entertaining read. If any one feels so inclined, Drop me an e-mail, most particularly if you also have CLL and something you read here was beneficial to you.
Though they are thinly disguised, real people are written about within this blog. If you want to learn how ONE person is thinking about the personal-human experience that is CLL, then read on with the understanding that somewhere between the facts and the experiences I write about herein, lies the truth . . . sometimes sacrificed on the altar of bruised and jaded perception. The list of things I don't know is very long . . . the list of things I am sure of is getting shorter and shorter. You are welcome if you choose to stay here a while. 3/07/10 Neutropeeny-Meany That’s how I feel when I can’t shake hands. Not shaking hands is so UNLIKE me! Folks have been checking on me. I am delighted when they do. My friend Frank in Memphis, to whom you have been previously introduced, called a couple of times and left me a message. I sent him this e-mail, which brought him, and now you, up to speed.
My friend Ed Dye promptly lost a brief, violent struggle with cancer last year. Ed’s passing left a hole that can never be filled in so many lives. One of Ed’s favorite artists was a black gospel singer who recorded in the 1920’s, Washington Phillips. Ed’s favorite Washing Phillips song was “What Are They Doing in Heaven Today?” I wonder what Ed Dye is doing in heaven today. As Washington Phillips said, “I don’t know, but it’s my job to stay right here and sing about it!” Like Washington, I’m planning on staying and singing. We performed this song on The Sucarnochee Revue last Friday night, March 5, 2010. This is for Ed Dye, his family and friends, and for everyone who lost their battle, or loved someone who lost their battle with cancer. Here it is:
You can read the YouTube comments if you'd like. I botched the intro to this song in the WORST way. This song is in 3/4 time. I started it off, and sng the first line in 4/4 time and IT WAS NOT WORKING. I was in panic mode. My mind was racing, and I'm sure my blood pressure was off the scale. I ad to fix this, somehow, and fix it suddenly and dramatically. I managed to pull it off with the help of a superb, professional band. Thanks, guys for making me look good. I salute you, each and every one. Though looking at the video, it does not appear that I was in a panic, but I assure you I was. Should I get some sort of award for my musical performance that night? Naw! But someone should certainly nominate me for some sort of award for ACTING! The ACT was the best part of my performance. This is a powerful song. It will speak to your heart, not because of me, but because of the anointed words of Washington Phillips Washington managed to pull of this thing I find MOST admirable in a song: that it is mournful and joyful at the same time. 2/25/10 Can You Say NEUTROPENIA? There’s fact and there’s fiction. They are both here. You must choose where one ends and the other begins. I have warned you before. Rick is in the hospital. He is having major complications from his chemo. Chemo is dangerous business, but then it must be. One doesn’t get out a .22 to shoot a charging lion, but a big bore rifle with a big kick. It must stop the charging lion in its tracks, or the lion’s charge can be fatal. With a suitable big-bore rifle, at best you’ll have a bruised shoulder and a dead lion, and less desirable, a gun malfunction that still kills the lion but maims the shooter, and at worst a gun malfunction that maims the shooter and leaves the lion unaffected. I’m claiming a bruised shoulder from a well placed bullet for Rick. A bruised shoulder is sore as hell, but it heals in time; perhaps, long after the lion is dead. “You are neutropenic,” Hemopsapien said to me, “Go home!” Now the Earth is not sterile. Mississippi is not sterile. My home is not sterile. Sterile is what I need. Mississippi is what I have. Mississippi may be at its most sterile point right now, though; the cold weather having put spores, bacteria and other microbes into a hibernation, a winter respite, a frigid isolation that will vanish with the spring sun and humidity. Life here in spring and summer grows with reckless abandon; the life that we can see, and the life that escapes our vision but affects our lives, nevertheless. Life is ever restless here, ever encroaching. An untended pasture left idle for two years becomes a tangle of briars and weeds through which only snakes and rabbits can pass unscathed. Pastures once grazed by cattle, leaving their own lively uncleanness to fertilize that which must inevitably come after, pastures through which one could have walk briskly last year, are now choked with wait-a-minute vines; the ones that grab you as you pass and seem to ask, “What’s your rush? Why don’t you just stay here and wait a minute?” That minute is required for disentanglement, alone. Stemming blood flow from briar-scratches and a chemotherapy induced low-platelet count can take longer than a minute. You can almost hear the saw-briars laughing at you. You can almost hear the rabbits laughing. You can rally hear the s-s-s-snakes s-s-s-slithering along though the weeds, hissssssing with laughter, but you can’t see them, your feet being shrouded by a damp thickness, through which you dare not peer lest you see something you’d rather not. For some reason, I am transported to the school cafeteria, in line with my tray, I reach for the silverware as I approach the food bar, hair-netted ladies placing food on trays ahead of me, food that looks like it might be leftover government commodities, canned and prepared by those companies unable to qualify for a contract to make MRE’s for the Army, and struggling to sell their manufacture to institutions looking for the lowest bidder. It’s lowest bidder food being dolloped out onto the trays by the hair-netted ladies, stern looks on their faces, always looking like someone else’s grandmother, never mine. How did I get in line in this school cafeteria? Why am I here? Still reaching for the silverware, and wondering why we still call it that, silver being as far from this place as food prepared with fresh ingredients and even further from the not-so-stainless steel utensils I am approaching. I see the forks, knives and spoons. Ahead of me, I also see hands, some merely unwashed, some seemingly filthy, handling the silverware. When it is my turn, I pause to inspect each fork and knife before I make my final selection, as if my eyes alone could tell me which ones were home to undesirable colonizations and which were not. After some time, the people behind me getting impatient, I make my final selection, more satisfied than a random grab, but really preferring to wait until fresh hot silverware came out of the dish washing machine somewhere in the bowels of the cafeteria. I could not wait that long, the folks behind me making impatient noises, so I take what I have and move forward toward the mostly gray and brown food, watched over like diamonds in a mine by the hair-netted other–grandmother ladies, afraid they’ll put one more gray-green bean on the tray than they should. The gray-green beans look less promising than the silverware in my hand, but I am hungry and press on towards the dollops which will soon be placed on my own tray. The lady behind me sneezes into her right hand, wipes off her nose and mouth with that hand, rubs it onto her pants leg, sniffling a time or two to re-claim into her own body that which would not be reclaimed. She sneezes again harder this time. Her left hand holding her tray and silverware, her right hand flying to her mouth, no doubt failing to contain all the particles flying from her mouth and nose faster than Nolan Ryan can throw a fastball and spraying all those around her in a manner akin to me spraying the lawn with weed-killer from an applicator at the end of a garden hose. At one time this would have gone without notice, but today I feel violated. This woman’s bodily fluids have now penetrated those around her. Perhaps “penetrated” is a harsh word, perhaps too suggestive. We’re just talking about two sneezes in the line at a cafeteria. I have no connection with this woman other than the cafeteria line. No connection, that is, until her sneezes. Now, perhaps, we are bonded in an innocent but very intimate and dangerous liaison. I wince at the thought but keep on moving through the line. The vivid redness of the beets catch my eye like a red ribbon around a box of chocolates amid the myriads of brown and gray on the buffet. “I’ll have some of the beets,” I said to the hair-netted lady number one, hovering over three bays of the buffet, “and some of the not-so-green beans.” She did not think this at all funny. She had no sense of humor. She dolloped the beets out onto my tray with a clang of the spoon, spattering crimson beet sauce over the tray, reminding me of the blood shed in untended pastures. She then scooped up the gray-green beans, a heaping spoonful, and cutting her eyes at me and flashing a missing-bicuspid evil smirk, shook beans off the spoon until I was sure I was at only 75% of my full bean entitlement, her way of punishing me for my remark which she apparently took as a personal insult of her culinary skills, which at this cafeteria consisted of placing gallon cans of army-reject green beans in a device that cuts them open, and the pouring of them into a 25 gallon pot already on the stove for heating, and now being served at a tepid less-than-140 degree temperature, which meant that any particulate ejecta from the sneezes of the woman behind me failing to be caught by the useless glass shield of the buffet warmer, since NONE of us sneeze while standing erect, leaning down to do so; and had she remained erect, she was too short for the glass shield to be effective; those particles were now growing in the tepid, warm moisture of the gray-beans, bacterial cells multiplying dividing as rapidly as nature would allow, prompted by the warmth, which, unable to be classified as HEAT, left them undeterred to do so.
“Beef Tips over rice, Salisbury Steak, or Chicken Spaghetti?” She asked. I looked at the beef tips. I looked at the Salisbury Steak. I looked at the tiny sweat beads on her lip. I looked at the hair-net on her hair. I wondered why it did not cover her eyebrows. Surely, there was a rule that that much hair had to be covered as well. I glanced around for a SERVE-SAFE certificate, which should have been placed somewhere visibly near where the food was being served. I did not see one. I’m sure one was there, somewhere, but a glance did not reveal it. “Beef Tips over rice, Salisbury Steak, or Chicken Spaghetti?” She asked, again, louder this time. I looked at the Beef Tips and Salisbury Steak, again. For the life of me, I could not see any difference between the two. Chopped up cull-brood-cow in brown gravy in food bay number 4, and ground-up re-assembled cull-brood-cow in the same brown gravy in food bay number 5. I then looked at the chicken spaghetti in food bay number 6. I shuddered at the sight of it. Now I love chicken. The contribution of that bird to human civilization is incalculable, but I will only eat chicken under certain closely held and sacred circumstances; I will almost NEVER eat it if someone else has cooked it. I will not eat fried chicken from a convenience store, Popeyes, KFC or anywhere else. I will eat it if I fried it, my mother fried it, or my wife fried it. I love and will eat smoked and barbecued chicken that I have cooked at my own home, but I will not eat it if it has been cooked by someone somewhere else. I haven’t always been this way, but I have become obsessive about it. I have no answer as to how I developed this obsession; it is there, nevertheless. I will not eat chicken at church pot-luck, I don’t care which good-sister-so-and-so fried it. I have a few non-home exceptions to this, but these all revolve around elderly black people who helped teach me how to cook, who are dying out now as that entire generation passes on into the ages, and their offspring, because I know whose hands and instructions they learned to cook AT. The chicken spaghetti looked like something that had already been eaten and regurgitated. It had the yellowness of saffron, but certainly not the elegance of saffron; more by way of powdered cheese mixed with powdered milk, and salted like a silver-mine straight from a Mark Twain story, with a big chunk here-and-there of a piece of old-worn-out-laying-hen carcass. I looked again at the uncovered bushy eyebrows. I looked at the sweat beads on the lip. I looked at the chicken spaghetti. “Sir, you are holding up the line! Now what’ll it be?” Her belligerence was nearly uncontrollable. She could tell I was amazed at those eyebrows. My mind now made up, “I don’t want any meat. I’ll just have a roll to go with these beets and green-eyebrows,” I said. “What!!!???” “”I mean green-beans,” my face now as crimson in embarrassment as the beet-sauce spattering my plate and hers just as crimson from anger. The first roll she bounced onto my tray bounced right off and onto the floor. “Those are some heavy-duty rolls,” I laughed, trying to make a joke and ease the tension, but it would not be eased. She looked down at the roll on the floor. For a split-second, I could tell that it crossed her mind to pick it back up and put it on my tray, which I am firmly persuaded she WOULD have done had no one been watching. Oh, Lord, Protect us from what goes on in food-preparation places when no one is watching! She ever-so-slightly leaned down towards the roll, the greasy tongs in her hand making an ever-so-subtle hint of movement towards the roll now on the floor. “You wouldn’t DARE!” I said, our face both crimson again, but the reasons reversed this time. Her crimson embarrassment meant that I had correctly read her mind. She WOULD have picked that roll up. Eyes down, now completely hidden by those eyebrows, she placed a fresh roll on my tray and I gave one more look at those eyebrows and beads of sweat on her lip and this time I stared long and hard; deliberate. Her face had turned crimson again, this time back to an angry crimson; everything now crimson-less except for HER face and the beets on my tray. I was beyond anger and embarrassment. I had read her mail. I had caught her with her pants down. I was sublimely superior to her, having caught her, one might say, inflagranti delicto. The color on my face was no doubt similar to the color on Napoleon’s face as he snatched the imperial crown from the hands of Pope Pius VII and placed it on his own head. I had all the confidence, vigor and power of a newly crowned emperor. Now, she could not help it that she looked like the child of Lee Marvin and James Coburn, but she could surely trim those eyebrows a bit as she brushes them back every day. I’d buy her some scissors. I moved on with my tray toward the cashier, now drunk on the wine of my own unparalleled, imperially superlative humanity. During all of this, the sneeze-lady had gone around me, and was now making her payment and getting her change as I was approaching. She had paid in one-dollar bills. I didn’t think anything about this. I did not mind that she had gone around me, I was not inconvenienced by that. Though I now looked around, suspicious of anything she might have touched. “Vegetable plate and tea. That’ll be $5.60,” said the cashier when I arrived. I handed her a ten. She counted out the four dollars and forty cents change and held it out to me. I went to reach for it automatically, but had an instantaneous frightening thought, and suddenly pulled my hand back at the same instant she was trying to place the money in it. The dollar bills and the change went straight to the floor, the coins naturally rolling into the most inaccessible places as the dollar bills fluttered to the ground. These dollar bills were the same ones that had been given to the cashier by the sneezing woman, who, holding her tray in her LEFT hand had used the same hand into which she had sneezed to give the cashier the money. “I’m sorry,” said the cashier, mistakenly and graciously thinking that this somehow must have been her fault. She reached into the cash drawer and got out some dollar bills that, while I could not be sure were NOT tainted by disease, microbes, or someone else’s precious bodily fluids, I knew weren’t the same ones handled by the sneezing woman. Still I was wary. Holding my tray firmly in both hands, gripping it as if it were too heavy to hold for an instant with one hand, I turned my side to the cashier. “Would you please just stick that in my coat pocket?” I asked. She smiled and did so, then closed the cash drawer and retrieved the dollar bills on the floor, the invisible coins having to wait until the lunch rush was over. Satisfied with how that worked out, I looked around for a place to sit. There was sneezing woman sitting by herself at the only table that was not crowded. I did not want to sit there. I looked around for a seat, not really wanting to sit too near anyone, but it was looking more and more like the choices would be to sit next to some stranger or sit at sneezing woman’s table. I gazed and gazed as more and more people passed by me. Across the entire room, I saw the wave of a white-sleeved arm with a beckoning hand. It was Hemosapien. Seated with him at a table way over in the corner were Margaret, Harrell, Rick, Mrs. Grace, Neil-Earth Planter, Johnny D., Phillip, Mike, Jimmy, Carolyn, and Dr. Cecil. It seemed like a lunch-meeting over which Hemosapien was presiding. There was one seat left at the table and Hemosapien pulled it back and invited me to sit down. “Well fancy seeing all you here!” I said cheerfully. Everyone at this table was a cancer patient, a cancer survivor, or a physician, or both. They all said hello back, and smiled all around as I dove into my beets and gray-green beans. “What brought you all together, here?” I asked., cheerfully. “We followed you here, knowing you'd be unable to stay put,” Hemosapien said in an ominous tone. “And with good reason,” said Dr. Cecil by way of reprimand, of he was never short on giving, nor at which he was ineffective, such is the respect I have had for this man-physician-surgeon-cancer survivor, who served me as my physician from the time I was a teenager until in my 30’s when I moved away. “You shouldn’t be here in this crowd of people,” said my friend and fellow cancer patient, Margaret, gently, sweetly, but firmly. “You should be at home,” said Mrs. Grace, with all the charm her genteel, South Georgia self could muster but in the voice she used when she expected to be obeyed, which I’m sure made her whole household step-and-fetch. Mrs. Grace, very ill herself, had gone to great lengths to be there. And you should do what Hemosapien tells you to do,” said Neil Earth-Planter and Johnny D., both two-time cancer survivors and close friends. "You don’t need any complications that, should they not kill you, eat up all your annual insurance limit,” said Carolyn, a cancer patient and clinic office manager, trying to help me stay out of a jam as they have done there so many times before. Rick, Jack, Harrell, Phillip, Mike and Jimmy all silently nodded in agreement. “So this is sort of like an intervention a caring group has with a chemically dependent friend or family member?” I said more than asked. “Similar,” said Hemosapien, “except your dependence is your independence.” “And why would you trade your leukemia remission for a possible death-by-numerous and/or various types of infections on a trip to a bad cafeteria?” asked and admonished Dr. Cecil? I looked at the even more unappetizing food on my plate. I looked at the friends and caregivers all around. While pondering this, Hemosapien’s cell phone rang. He answered it, said a couple of brief words, and then handed it to me. It was Gooday on the other end. “Go straight home,” he said, “Do not pass GO, do not collect $200.” It was an order, not a request. I looked at Hemosapien – He nodded. I looked at Dr. Cecil – He nodded, scowled, and nodded, again. Everyone was nodding. The phone went dead and I handed it back to Hemosapien. I thanked them all for their candor, their caring, and their courage to demonstrate it so. There was noting left to say. I got up and headed to the door. Approaching the door simultaneously was sneezing woman. I raced to the door to get there ahead of her, opened it wide, and she walked through like a queen headed for her carriage, nodding to me as that same queen would to her footman as she did so. “My pleasure, ma’am!” I said with a smile, more to myself than to her because I had prevented her from touching that door handle with that same, sneeze-catching hand. Perhaps she thought I was gallant. Perhaps she thought it was her right to have the door opened for her. Perhaps she thought I was an anachronism from an age when men still did things like that for women. She’d be right if she thought that. She’d also be right if she were the jaded type of woman, thinking that men always have an ulterior motive in their actions towards women. She’d be right, of course, about me and an ulterior motive, but she’d miss by a country mile the motivation. I laugh at the irony of that all the way home, my un-sterile but warm and inviting Mississippi home2/20/10 Deep Dark Foreboding Feelings Last Friday finished my chemo. For three days afterward, I felt pretty bad. While feeling bad, darkly bad, this went through my mind. Deepest darkest foreboding Of life-giving toxic chemicals Pushed through veins Tired of assaults and punctures Rolling, resisting, rebelling At indignities and attacks by others
MY body says enough! And more! MY mind races, MY mind races. MY pains. My woes. MY ills. ME. ME. ME. ME. ME.
But SHE. The labored breath and groans next to me come from one Also getting toxic cocktails That promise everything yet for her deliver nothing but pain Hairless with skin eruptions Stomach lined with concrete blocks And eyes colored like Haitian cement Looking at her worried mother Whose brow furrows like Soybean fields plowed Too soon by desperate farmers After winter rains Clumped up piles of wadded intractable earth No order to the chaos caused by the tractor Pulling a heavy plow through a field Not ready, not receiving, not responding Just like her daughter’s body. “She’s not doing well at all,” her mother said. “The doctor says that it’s just a matter of time now.”
Melanoma spreads to livers To kidneys To colons To lungs To other vital places Leaving jaundiced colors to skin Already insulted by a host of toxins Those promising toxins They promise all They don’t deliver for some Like congress Like political candidates Like TV preachers “Stretch forth your hand and send your seed faith gift of $49.95 or more plus shipping and handling for our free series of cassette tapes entitled “Faith and Healing and Why Your Personal Failings Prevented Yours’” The radio blares in frequencies harsh on the ears And words harsher on the heart.
Her real pastor immediately near Praying in earnest humility Before a Divine providence He doesn’t fully understand Yet moved by a faith that is genuine and real He holds her hand I see her hand clasp his urgently And then tighten further He offers a prayer to a loving God He asks for healing He asks for comfort He asks for peace. I pray with them. I pray earnestly
Through the tangle of tubes carrying chemicals To my own veins In mid-prayer I reach for her Mother’s hand. Her Mother grabs it like A starving man would grab A moldy piece of bread. She squeezes my hand hard and harder still But not at all like the hand-squeeze Of an intrusive life insurance salesman Whose handshake now would be As comforting and effective as Her application for a policy As comforting and as effective as the medicine Pumped into her veins. She squeezes more like there is some essence In me she would claim for her daughter. I give it freely. I give every microgram Every nanogram Every angstrom's length of it Every Joule Watt Newton Erg Calorie BTU By whatever unit it can be measured By whatever tools it can be measured with. Every grain and dram I can muster, withholding nothing If her squeeze of my hand During the pastor’s prayer Can somehow transfer any bit of it To the failing life of her precious daughter The product of her own body Her life’s biggest investment But how can faith be measured? How can faith be transferred?
Haitian Cement gray, jaundice yellow No color chips for these At Sherwin-Williams. Maybe paint-color names will help. We’ll call it “Earth Ochre” Perhaps “Battleship Gray” Or “The color formerly known as NORMAL” That’s it. Just a change in perspective. Just a re-definition of terms. Just a wave of the hand Just a denial of reality. Denial of reality, is that what faith is? Jesus said Faith moves mountains. Yet her mountain seems immoveable. It does not flee at the utterance of Words that sound faithful. Where is our faith? I’ll look at Sherwin Williams. Maybe they have a color called “Sure-fire Faith.”
What will kill her? Her lack of faith? Or perhaps it is the cancer? It’s the CANCER I wish that TV preacher were here So I could get my hands around his neck. I’d bitch-slap him right in front of the real pastor I’d take his own bible out of his hand And thump him with it until he cried “UNCLE”
I bless that humble man who is THERE That humble man who offers COMFORT That humble man who sheds tears WITH them In his own grief mourning his lack of ability To change the situation erroneously daring to think her impending demise Is somehow his personal failure In the face of faith we all face our own demise Why, then, would this be his personal failure?
Eliphaz , Zophar, and Bildad said to Job “Job, old buddy, you must admit to the secret sins that caused your great misfortune.” Job said, “I will admit no such thing.” God said, “Job is an upright and righteous man.” GOD said it. GOD said it. GOD said it. God never said that about Eliphaz. He never said that about me. He never said that about that TV preacher He never said that about the fervently praying Pastor Whose brow sports sweat beads akin To the furrows on the mother’s Eliphaz, et.al., or GOD. Take your pick. With the greatest confidence I’ll pick GOD over Job’s buddies. Yet Job suffered. Job suffered horribly Job suffered wickedly.
I suffer now because I am doing well And I feel guilty about it. I wonder why am I not the one who is dying? Why she? Why not me? How pointless is that? I expect any day to read a certain Young woman’s name in the obituaries In the daily newspaper. I look every day. I pray for her recovery every day Yet I look in the obituaries every day
When I find her name I will see it spelled out. It will spell out her name. It will seem to be a name that is not my name. But just as sure as if it were spelled just like mine It will be my name that I see and I will mourn my own demise with hers.
When her pastor finished praying SHE looked at me with those cement gray eyes And there was the spark of life in them Invisible for some, but I saw it clearly And then she smiled. With labored breath but a grace that filled the room With a sweet aroma I can still smell She said, “Thank you for praying with me and my mother.” “It meant so much to us both.”
My words have failed me now But others I recall that were recorded so long ago Now come fresh to my mind speaking without fail across ages of human loss and suffering.
For now we see through a clouded dark glass; but then face to face: now I just partly know; but then I shall know and shall also be known. These three things abide: faith, hope and love; but the greatest of these is love.
These are the words I will keep. I’ll reject the rest. Other than that, I'm doing just fine! a five mile hike yesterday through gorgeous woods along the creek. Just delightful. My old self is returning. I AM SO THANKFUL FOR WHAT I HAVE! 2/13/10 Delinquent in posting/Finished with Chemo I have been delinquent in posting. I apologize. Many of you have sent me e-mails worrying about me. I am OK. I have decided, on my own experience, that the effects of chemotherapy are cumulative; The more you have, the worse the side effects. Unfortunately, it does not seem to be the case that you get more conditioned to it, thus the effects are less. It is the reverse. The life-restoring toxins seem to build up in your body, and each successive round is harder and harder on you. I had some days after round 5 where I felt absolutely awful; not a particular awful, such as nausea, but a general malaise of awfulness, a covering tarpaulin of awfulness, a pool of awfulness in which I was dipped by unseen hands and held under until I inhaled awfulness after which I was let back to the surface, gasping, only to be re-submerged in mid-gasp. At least that’s how is seemed. This did not in Post-round-5 week 2, nor 3, but continued on through week 4, at which time I was to start round 6. Round 6, my final round for this first cycle, and hopefully my final round for many years, started on Wednesday, February 10. As the reader has learned, each round consists of three days. The first day of the round I get infusions of Rituximab (Rituxan), Decadron (a powerful steroid), cyclosphosphamide (Cytoxan), and Fludarabine (Fludara). The Rituxan cannot be given without the steroids because of the potential for serious adverse reactions, since it is a monoclonal anti-body, synthesized in mice, and my human body wants to reject the mouse anti-bodies, and can do so violently. It must be given slowly. I have tolerated it well along the course of the treatment, though, only having a reaction the first time I took it at BATCC. It takes me all day to get this drug. Rituxan, though terrifically expensive, is truly a remarkable drug. It is not a typical chemotherapy agent wherein it damages healthy cells along with cancer cells, but targets only the cancer cells by the recognition of a certain protein that exists only on the surface of the cancer cells and not on the healthy cells. It and similar drugs represent the future of cancer treatment. When they learn to synthesize Rituxan in humans, or have my own body synthesize it, it will work like a vaccine. I don’t think my friends at BATCC and the rest of the research facilities of the CLL consortium are far away from accomplishing this. While day 1 of a round is long, it has its benefits. I met and visited with Mr. Harrell, who is a retiree from one of the local power companies for whom my company does much work. He worked in marketing. I know his former boss well, but had never had the opportunity to meet Mr. Harrell when he worked at the power company. We have many mutual friends. He first came up to me in the waiting room to confirm that I was one of the musicians that played on the Sucarnochee Revue, indicating that he was a fan of mine, having attended the show for the first time on February 5. Of course, I liked him right away, since it is easy to warm up to someone who has just indicated that they like your music! After a brief visit in the waiting room, I was called to go to labs and he was called back to the chemo room where he was to receive continuing treatments for lymphoma. Not only did we share an interest in music, and things related to power companies and many mutual friends, we shared a common bond in that we both had blood cancers. This bond was growing thicker by the moment . . . a most interesting phenomenon that can happen easily in a cancer treatment center waiting room. After labs, I went right in to see Hemosapien. He walks in with a big grin. I’m sure my grin was just as big back. He asked me how I had doe after round 5. I told him, and he was not surprised that this one was more difficult than previous. I told him that the lack of sleep had been one of the most difficult parts. “Are you taking the medicines you’ve been prescribed to help you sleep?” he asked. “Ocasionally,” was my reply. “And when you take those medicines, is your sleep better or worse?” “I sleep better when I take them,” I said. Puzzled, he looked at me and very reasonably asked, “Then why don’t you take them as they have been prescribed?” I had no answer, just hung my head and shrugged my shoulders. I went on to explain that I hated to take those drugs, some of which can cause dependency, and was again admonished that I had shown no signs of developing dependency, and should take them as they had prescribed them so I could sleep, and to stop complaining about the lack of sleep if I wasn’t going to take the medicine. In former days, I would have had some smart-ass answer for Hemosapien, but I have learned to trust him, and I accepted his admonition in humility, though when he admonishes, he always does so carefully; he never knowing exactly how I might respond. When things have not gone my way, he has taken to holding his fingers up in the universal anti-hex sign when he sees me approaching, which now completely disarms me and the scowl on my approaching face turns into a smile when I see this. Hemosapien is not my enemy, he is my friend and close ally. I will take my medicine. I will be admonished. I will humble myself. After seeing Hemosapien, I was sent directly to the chemo room. Nurse Dana and Nurse Juanita were on duty. I was happy to see them and they were happy to see me. We have become close. They are so kind. I saw Mr. Harrell, all plugged into his drip machine and promised to come back and visit with him later as I trudged back to the corner of the chemo room that I like where I can spread out all the paraphernalia that I bring with me and not be in everyone’s way. There was no rush to get back to Mr. Harrell, he was taking Rituxan, too, and would be there all day. About the time I got hooked up, here comes my long-time friend Rick. He has Hodkins Lymphoma, and was here to get a shot of Neulasta to boost his white blood cells. They had threatened to give me this back in January, but my blood numbers recovered (miraculously, I might add) and I was not required to take this damnably expensive drug ($4,000 per shot!). Rick had not been so fortunate, nor had his chemo gone as well as mine. Though he was responsive to the chemo, one of the drugs in his particular chemo cocktail has caused a particular debilitating side effect, a rare one, which had reduced his pulmonary capacity to the point wherein for the past two months he had been unable to work; this causing an extreme hardship on him and his family. There’s nothing easy about cancer. Rick was doing better since his doctor had discontinued the drug, one typically given with his variety of cancer, but the one that was the least effective of the cocktail. With the chemo-cocktails, they usually have two or more drugs they give you. One of them will be the front-line, the one that does most of the work; the quarterback one might say. Usually there is a second, less effective, and working in a different biological manner, which is designed to catch and destroy some cancer cells that may be overlooked by the front-line drug,; like a wide receiver relied on and used frequently by the quarterback to get the job done. Frequently, there is a third drug, also working by a different biological mechanism, which hopefully catches the cells that the first two miss. This one works like the fullback who has run a short course out of the backfield, and when the wide receivers are thus covered and unavailable, the quarterback can spot and throw the ball to the fullback who has snuck out of the backfield unobserved by the defensive backs. From my layperson’s observation, those 3rd line drugs are older anti-cancer agents, available on the market for a long-time, are the least effective and do the mot collateral damage, tough they are also the inexpensive ones of the cocktail. In my case, the Rituxan is the front-line agent. It costs $12,000 per round. It targets ONLY the cancer cells. Then There is the Fludarabine (it costs about $2,700 per round). Then, there is the old stand-by Cyclosphamide. It costs about $225 per round. If they had to drop a drug from my regimen, I’m sure it would be the cyclosphamide, NOT the Rituxan! Rick stayed with me for a while after he got his shot of Neulasta, then he had to be off. I enjoyed his visit. Though he is feeling bad and cannot work, his treatment is WORKING! That’s a tremendous lot to be thankful for. In the midst of his pain, Rick has not lost his wonderful sense of humor. Though the lines on his hair-less head and face are deeper, and the pain shows through, a smile is quick to spread across his face; this has not changed. He has always had this. Rick is still in there. I also visited with Carla. Carla has a cancer which has metastasized. She is gravely ill. Her chemo was making her so ill she was nearly immobile, and curled up in a fetal position. I said hello, and she smiled and said hello back. We talked for a minute. Carla very matter-of-factly stated that her chemo was about to kill her, and that the devastating effects of the chemo, though nearly unbearable, was all she had to hang on to, and it did not appear to be stemming the tide of the cancer growing in her body. Her one chance was for this to work, and if not, her next step was a brief stay at hospice. I looked deep into her eyes. I saw resignation, I saw indifference, I saw pain, all in rotation, and then I saw a spark of defiance in them. It’s that spark of defiance, still alive in her as her body is failing, that will keep her alive and make the chemo work if it will work at all. Resignation will not do it. Indifference will not do it. Pain will not do it. Defiance certainly will. Of course, I offered no empty words of encouragement to Carla. She wanted to do the talking. I am everyday amazed at how cancer patients will talk to other cancer patients. After she was through telling me about herself, she asked me how I was doing. I could hardly speak. I opened my mouth and the words would not come out, just a croaking sound as a swollen lump developed in my throat and tears clouded my eyes. When I had recovered and was able to speak, I told her that I was in remission and that I was taking my final round of chemo, hopefully to be through for a long time. She smiled and said she was glad. She held out her hand, and I grabbed it. I asked her if I could pray with her. She said please do, so Carla and I and her caregiver who had accompanied her all prayed together. These prayers are hard prayers, but they offer comfort anyway. We get to a point in our lives where our prayers can only be, “God, I am in your hands!” Where else can we go? And in the long-run, or in the pre-run, where were when we when we started? We can only state the obvious. Morose and feeling guilty after my visit with Carla, I began to ponder the why’s. Why was I getting better and she I the process of dying? Why me? Why she? These are hard questions for which there are no easy answers, and if someone tells me that there must be some secret sin in Carla’s life that is causing her to not get better, they’d better be ready to duck. The righteous suffer along with the wicked. We are all in the same boat. Carla IS me, and I am SHE. John Donne Meditation XV11 Perchance he for whom this bell tolls may be so ill as that he knows not it tolls for him; and perchance I may think myse I am Carla. She is Me. We are all each other. I also visited Rick’s friend Jack, who came if for his chemo. He was in till in shock when I met him in January, having just received his diagnosis of lung and colon cancer. He was already responding to treatment. He has a long way to go, but his outlook was bright. We spent very little time talking about our cancers, but about solar cells, fuel cells, producing hydrogen by electrolysis, and Nicola Tesla. What a delightful conversation we had. I have plans on knowing Jack better in the future. He is going to become a friend, not merely the friend of a friend. I then visited with Mr. Harrell. Apparently I am a real gadabout. Mr. Harrell and I discussed all our mutual friends, and he went on to tell me of his hobby of woodcarving. I could tell from the way he spoke about it that he was no casual woodcarver. I am looking forward to seeing some of his work, which he displays in shows all around the Southeast. He then told me about a mutual friend who is also a patient at the cancer center. Margaret is one of the sweetest, classiest ladies I have ever met. She is the secretary of a close friend of Mr. Harrell and me. She has just been diagnosed with cancer and just started her treatments. It was too late in the day to call her when I learned this, but I called her yesterday morning. The first thing she did was to ask me how I was doing and congratulate me on having heard that I was in remission; no mention of her own troubles, and that she had been praying for me by name and I was on the prayer list at her church. She then asked me if I wanted to speak with Wayne, her boss. “No, Margaret, I called up to talk to you.,” I said. “Oh?” she asked. “I saw Mr. Harrell at the chemo clinic today, and he told me that you were also a patient there.” “Yes!” she said, sounding excited. I knew what was coming next. “Do you mind if I ask you what kind of cancer you have and how you are doing?” I asked. “No, I don’t mind.” And then she went on to tell me about her diagnosis, her trip to UAB in Birmingham. And her referral back to the cancer center in Meridian for treatment, and that Hemosapien was her doctor. I told her she had a good doctor, and that I was still helping train Hemosapien to be an even better doctor. She laughed out loud at this. “He certainly is a fine young man, and I have a lot of confidence in him.” she said. “So do I, though not so much at first. I had a lot to learn about myself, but I have watched Hemosapien grow tremendously in the past year. I think one of the reasons I have cancer is so that I would be able to help Hemosapien become he best oncologist he could possible be. I know I keep him on his toes. He has to study lest I come up with some questions for which he has no answer. He detests that, I’m sure, but I love it to try my best to befuddle him. It is getting harder to do so. I have to study hard myself.” We both laughed. We both agreed that we admired and respected our oncologist. We both agreed that our community was fortunate to have this cancer clinic. We both agreed that we would continue to pray for each other, for Hemosapien and his colleagues, and for all their patients. Then we said goodbye. On Wednesday, before the start of my treatment, Hemosapien challenged me. “Were you ever actually tested for IgVH mutational status? (That is the Immunoglobulin Heavy Chain Variable Region Gene’s mutational status for you laypersons . . . I’m sure that clears all this up for you!) It’s very rare that they actually test for this since only two places in the world do it, and it is so expensive.” He continued., “Or did they just make the correlation because you are ZAP-70 positive?” “They actually sent my bone marrow to the University of San Diego Medical Enter and did the IgVH. The report came back to Good from Dr, Kips himself, and I am bona-fide un-mutated.” I said. “Then it’s certain, for sure,” Hemosapien said. He already knew this, looking at my chart as he asked me that, but baiting me hoping to catch me in a trap. And out of nowhere, he asked, “And what does the ZAP in ZAP-70 stand for?” Without any hesitation I said, “Zeta Associated Protein.” “Very good,” a big smile on his face. “What did you think I was, a mere first year medical student?” in retort, smiling back. “You’ve been a good student.” He said. “So have you,” I replied. He smiled even bigger. He makes too much money to smile too much. I should get him frowning more often. Unfortunately, knowing this does not help me. ZAP-70 positive and Unmutated IgVH gene is NOT a good thing. It places me in a higher risk category and means that my leukemia is more likely to return sooner, and perhaps more virulent when it does. I am aware of the numbers, but I have learned to listen to Neil Earth-Planter, and I will get on with my life and not be morose and sullen about something I can do nothing about. Yesterday, Friday, February 12, saw the early morning hours begin with heavy snowfall. Previously when inclement weather had struck Meridian, they had closed the cancer center and directed all the chemo patients to the hospital. I asked Hemosapien before I left Thursday where I was supposed to report, the weather forecasts ominously and consistently indicating 4 to 5 inches of snow accumulation. “We don’t know yet.” He said. “Well, I’ll expect a phone call letting me know where to report.” “I will let you know. I’ll be on call this weekend, so I’ll see you whether you are here or at the hospital.” He said. True to his word (and why not?), nurse Jessica called me about 4:30PM. She had called the house first, but was not satisfied at having left me a message thus, and indicated that she could not be satisfied until she had spoken to me in person. “They have decided to close the clinic tomorrow. You are to report to the hospital any time after 10:00AM for your final round of chemo,” she said. So, in the heavy snowfall, I put the ol’ pickup in four-wheel drive, and headed off to Meridian to Jeff Anderson Regional Medical Center for the final day of the last round of chemo. After the admissions paperwork was filled out, I was directed to the 4th floor East and told to give the nurses the papers in my hand. Lo and behold, TWO of the nurses I had gone to school with. Sandra (whose entire family were friends of mine) and Scotty, whom I did not know nearly as well, but knew and liked nevertheless. I was in good hands. While they were getting my chemo medicines ready, I wandered over to visit with my friend and former bandmate Phillip, who was being treated for esophageal cancer. Phillip has just been diagnosed and they put him in the hospital for treatment because of come complications. Our mutual friend Amos was there, and we visited, laughed, chatted, gossiped, told jokes, and generally carried on until such time as I hear my name being urgently used on the intercom. “Mr. Sharp, Mr. Sharp, please return to your room. Mr. Sharp, return to your room!” I was missing in action. When I got back to my room, Sandra was there, patting her foot in that manner that a mother does to a wayward child. “They finally told you had gone to visit Phillip. I had no idea where you were. I thought you had left.” I was guilty, I did not argue. I accepted this rebuke. Then, Sandra hooked up my IV, and I was well on my way to getting the last dosages of this stuff for hopefully a long, long time. When finished, I went back to see Phillip. Amos had gone by this time, but he left me the nicest note. I then headed to the grocery store, and ravenously hungry, bought everything I could see that looked like it might be good to eat. Ribs and chicken for the grill. Some red beans and sausage for seasoning, all with the idea that being snowed in, I’d cook, and we’d have a nice family gathering. Today, the thought of me cooking anything, or enjoying eating anything seem much farther removed. I’m not going to cook anything. I’m not going to eat anything. I’m going to tote this small paint pail around, and every time I wretch, I am going to be thankful that I did not have to take extra steroids. I am going to be thankful that the chemotherapy they gave me has WORKED, and that every symptom of a side effect of the chemotherapy is something for which I am to be thankful. I am going to think about Carla. I am going to pray for her. I am going to thin about Mrs. Grace and pray for her. I am going to think about and pray for Margaret, Mr. Harrell, Rick, Jack, Mr. Riley, Mr. Hooper, and David-in-Tupelo and his sister. In wretched-ness I will rejoice. In discomfort, I will be cheerful. Though I will know despair one day in the future, I will not know despair today. Today, I will step outside the studio, and look at the sun shining on the beautiful blanket of snow that is covering the ground, and I will lean over, retch and throw up until my nose bleeds, and be thankful for every heave.
I will also think about what I posted on Facebook a couple of days ago. When you see others in grim circumstances, consider the mirror into which you gaze . . . then walk away in humility and thanksgiving for what you have. And you? How are YOU doing???? 2/8/10 Butt Dragging I have not posted in a while. I have some stuff stored up that needs editing before it can be posted. Thanks for your calls and e-ails checking on me. I am fine, but I my rear-end has been dragging. I have not slept well in weeks! Chemo round 6 starts on Wednesday. I'll have a full update then. Again thanks for your phone calls and e-mails. I am alive and well! 1/25/09 Still a Steroid Crash After Hemosapien’s blessing to forego the steroids on Chemo Round 5 Day 3, I thought I would be avoiding the steroid crash, or at least, that the effects of the steroids would be mitigated. No doubt, they were, somewhat, but on Saturday (1/23/10), during my granddaughter Maggie’s first birthday party, the steroid crash kicked in. About 4PM I simply ran out of steam. My boiler pressure was so low I just could not continue. I handed my video camera to my son and went and sat down on one of the sofas at the Lodge; I crashed and burned. When Debbie woke me up, everyone was leaving. I had missed most of the party. I then climbed the hill to the house, and exhausted, I went to bed. I spelt and slept. Woke up, then went back to sleep (unusual for me!) When I finally got up at 4:00AM, I felt pretty good. Sunday was a GOOD day! This morning, I am dragging a bit, but still the day offers promise. I am thankful for a day that offers promise. The steroids make you feel better than you really are. When the crash starts coming on, you notice that your joints are beginning to ache like they normally do with age, except those aches, having been masked by the steroids now come back with a vengeance, as if to make up for lost time. Then you notice a fever in your feet and hands. Then comes the crash. You watch the boiler pressure indicator go from red (where the steroids have you, running on a dangerous energy that is really an illusion) then down to green (where you should be, still feeling pretty good!) then down to blue (the level where things no longer work like they are supposed to!) until your pressure is so low that it won’t perform any useful work anymore. Then your motor stops! At that point, you have run up an energy deficit. The promissory note you signed for this energy loan reads “Payment on Demand” and is presented by your body for its immediate reconciliation. At that point, not only is your motor stopped, your eyes can’t even stay open. You are down. You are out. You have run out of steam; the last Foooossshhhh! of your engine sounds more like a whimper than a venting of useable steam to the atmosphere. If you pulled on the cord attached to the valve on the steam whistle, you’d just have a drip of tepid water down your arm, not the music of the whistle, not the warning of its blast to make way, nor the announcement of your presence on a foggy night. No one knows you’re there. You have become invisible. The only relief is that dreamless, black and dark state of sleep which overtakes you, but it is not a real recuperative sleep, more akin to not there-ness, a hibernation, a sulling, as if a ‘possum had been threatened, sulled, and thus sulled would not be awakened until left alone in silence. I have conflicting memories of that sleep. It seemed recuperative yesterday morning when I awoke, feeling pretty good. This morning, it does not seem nearly so refreshing, my memory of it having been dimmed by another 24 hours, I suppose. Perhaps it is because I am dragging this morning. Perhaps it is LAST night’s 3 hours of sleep which have dimmed the memory of Saturday night’s. Perhaps it is both of these things. Perhaps it is neither. I go to Hemosapien this morning to have blood work done. We’ll see how my numbers look. I will report back as soon as I can. I know you can hardly stand the suspense of having to wait! 1/17/10 Observations As you know, I finished round 5 of chemo on Wednesday. Hemosapien let me take the last day without the steroids, but indicated that I would probably have more nausea without them. He was right. I thought Wednesday afternoon was bad. Then, I thought Thursday was bad. Then, I thought Friday was bad. Then came Saturday. If Wednesday, Thursday, and Friday were bad, then how shall I define Saturday? The word bad, previously used, now fails to describe, and worse somehow falls short of the mark and though I have many at my command, I refuse to reach for superlatives. The Zofran? Completely ineffective. It no longer even has any placebo value. Still, I’d do it again without the steroids. I have managed to sleep and not have that awful steroid crash. Now it’s Sunday. It feels like I have swallowed a concrete block, which is sitting heavily on my stomach. This usually yields to nausea after a while, yet it is not as bad as yesterday. This could change in an instant, either way. Bottom line? I’m just dealing with unpleasant side effects of chemotherapy. They could be worse. They side-effects could be worse and the chemotherapy could be completely ineffective. As it is, it’s just the ZOFRAN that is ineffective. I am thankful as I sit here and write this. My thoughts are turned to those whose chemotherapy is ineffective while the side-effects are simultaneously debilitating. There are many facing this today. It makes me ashamed to consider any complaints.
My discomforts are mere discomforts. I am even more ashamed. You will forgive me, though, if I don’t want to chat much. I am not yet very good company. 1/14/10 Steroid or No? This week's three days of chemo were unremarkable, except for the following things.
My wonderful sister-in-law sent me this e-mail at about 5 o'clock this morning: What time did you get up? I answered her back: About 2, but I slept well. The sleeping well was, I think, because of having not taken the steroids plus the fact that I had not slept for the previous two days. When I woke up at 2 o'clock this morning, though, it was not without immediacy! I sent my sister-in law this e-mail back by way of response:
While nausea, at the moment, has all of my attention, I rejoice in the endurance of! You see, my LEUKEMIA is already in remission. The nausea is just a side-effect of a the final stages of treatment which is putting the leukemia even further down a dark, deep hole, and hopefully pouring as much concrete on top of it as the Russians have poured at Chernobyl. Now, where's my bucket??? Quick?? I hurl with glee, but am not very good company right now. 1/11/10 Chemo is a Go! I got to Hemosapien's at 8:30 this Monday morning. They called m in to the labs and got ready to draw the blood. The kind phlebotomist told me that I was headed straight for chemo after the lab-work was done. I then looked down in her hand, and there were but two vials for drawing blood. I asked her if she had the vial necessary to send to BATCC and she looked at her orders and indicated that she did not have any orders to draw blood for them and could not do it without orders, but that she needed to go ahead her ordered blood-work so I could start the chemo. "I'm not taking any chemo unless we draw blood for BATCC before my first treatment and after my last treatment of this cycle," I said. I was not angry, but I may have said that a little to emphatically. She did not know what to do at that moment. I suggested that she call Nurse J and find out how to proceed. We waited for Nurse J to call us back, and they sent me back out into the waiting until the matter could be resolved. Coming out of the lab I saw Hemosapien, who made the "don't hex me" cross symbol to me, and waved me on back to see him. "It's a good thing you remembered about the BATCC's blood sample. Nurse J is calling Nurse Susan for instructions right now," he said. I could hear that Nurse J was on the phone with Nurse Susan. Hanging up, Nurse J said, "They said they over-nighted the blood sample kit to us on Friday and that we should get it this morning. I looked at my watch. Hemosapien looked at his watch. Nurse J looked at her watch. 9:30AM. I knew that Fedex would probably have it here by 10:00AM. "You can start after it gets here, or you can wait until tomorrow," said Hemosapien. "Fedex wil have it here any minute now. I'd rather wait for a while and do it today rather than start the cycle tomorrow," I said. "OK," said both Hemosapien and Nurse J. Before sending me back to the waiting room, Hemosapien explained a few things to me. "If your neutrophil levels go any lower," he said, "We can give you Neulasta to boost it, but it's about $4,000 per shot. If you need it, you need it. When we get the labs, if they come back the same or higher, we will proceed. If they come back lower, that will present a problem." After we talked a bit about this weekend's hunting (which HE enjoyed without ME getting to go!), he sent me back out to the waiting room until Fedex could deliver the kit. My friend Rick and his wife were in the waiting room (Rick has recently been diagnosed with Hodgkin's Lymphoma, along with a friend of Rick's who is a businessman in town. We enjoyed visiting and sharing where we all were in our cancer journeys. Rick's friend had, just three weeks ago, been diagnosed with colon, lung, and Liver cancer. They found this at UAB after inconclusive biopsies here, and sent him back to this clinic for chemotherapy. I could tell that he was still in shock at what had been revealed to him as a result of a screening colonoscopy, which he had only agreed to tae after the repeated urging of his family. His cancer, having spread to more than one place, he was already considered to be Stage IV. He has already had one round of chemo, and was here today for his second. Brother Davey, my pastor, who came by from making his usual morning hospital rounds, and I prayed for him, and our prayer was this: That because of the screening colonoscopy, they had found his cancer early enough that his chemotherapy would be completely effective Getting that cancer diagnosis, anytime, is rough. Getting the week before Christmas is even rougher. "They've only got one kind of chemo for this," he said. "You take it and it works, or you take it and it doesn't!" Obviously, he has a lot riding on the success of his chemo. We all wish him that success in abundance. He and Rick and I continued to chat for a while, then they called me back to the lab. "Y'all got everything you need now?" I asked. "Yes," they said, with one phlebotomist pointing out, in an imitation of me which sounded very bossy and petulant, "You sure said that you were NOT going to take your chemo until we drew the blood for BATCC. For a minute there, we didn't know WHAT to do!"" "Abraham Lincoln said, 'plant your feet in the right place and stand firm!'" I replied. "I was just standing firm. I did not mean to sound bossy or agitated." "You didn't," said the phlebotomist, "But you sure sounded like you were saying, 'I'll just take my toys and go home'!'" "I didn't mean to sound that way. I could have said it n a different manner. I did not mean to be bossy." "That's OK. You knew what was needed!" was the reply. After the blood draw, I was sent back to the waiting room with Rick, Nanette, and Rick's friend to wait until they called me back into the chemo room. We visited, we talked, we laughed. They then called me back for chemo. Nurse Juanita had a difficult time finding a vein this time. She said the more I use those veins for the chemo, the more "used up" they become, until it becomes hard for them to find one. She had to abandon one vein entirely after several tries, apologizing profusely, and finally selecting another one which offered promise. She was successful with that vein on the first try. So as I sit here and write this, I am getting the Kytril, the Decadron, and the rituximab. The photo at the left shows the IV infusion machine and my left hand with the tubes in NB=Nurse Juanita's vein number 2. It will take me most of the rest of the day. Rick and Nanette are across the hall. We will tell each other jokes later and laugh at ourselves. Rick has survived the initial shock of a cancer diagnosis. I see a different look in his eyes. The look is the look of a fighter; a competitor; "If this cancer wants a fight, it'll sure get one," seems to be what the expression on his face is implying to the non-casual observer. The casual observer may just see his expression as a cockiness, or a dynamic self-confidence. I am not a casual observer. I see victory in his face. I hear it in his voice. I see peace on the face of his wife. Speaking of wives, Debbie wanted to come with me today, but I persuaded her to let me come alone, since someone had to keep the grandbabies as Piper is returning to school. She packed me a lunch. She filled it with surprises. She loves me so much. I called her to tell her that my blood numbers were good and that they were proceeding with the chemo. "Good," she said, and added, "Guess What?" "What?" I asked. "Happy anniversary!" She said. Today, she at home with our grandchildren, and me sitting here in sight of a life-long friend with whom I share cancer, while both of us are being pumped full of chemotherapy drugs which we hope are killing the cancer without doing to much damage to the things which must remain, is the 30th anniversary of one of the best and most prudent decisions I have ever made in my life. I hope there will be 30 more. It's possible! The CLL is in remission. Maybe it will stay in remission for years and years. Maybe it will come back in a few years. Maybe it will come back next year. Maybe it will come back in a few weeks. So many maybes. So many possibilities. So many imponderables we are required to ponder . . . or not. I'm going for the NOT. I'm just here, getting these miraculous drugs which have done, and are still doing what it is that they were designed to do. That's what I am focusing on. Not the maybes. Not the worries. Not the fear. Just the here, now, and the pleasant memories of 30 years of a happy marriage. The benadryl is making me sleepy. I can't tell if it's a daydream or a real dream, but I have visions of Debbie, Piper, Canaan, Livi and Maggie; Nurse Juanita has checked my blood pressure a couple of times as I am writing this...she says every 30 minutes. Time flies when you're having fun. Time marches on, but I get lost in it, not aware of it's passage, only focused on those things within my reach. Sorry for the politics yesterday evening. I admit it was inflammatory to list Al Gore, Al Sharpton, and Al Qaeda, and Alferd Packer on the same page. I do not apologize about Al Neumann! Then again, why not have inflammatory excess? I watch FOX news! How could I help myself? I throw back my head i a big guffaw at myself, and drop off to sleepzzzzzzzzzzzzzzzzzzzz, my laptop precariously perched, Norse Juanita kindly securing it for me as I dream of 30 years! Happy anniversary, Debbie! Update at 1:20PM. I unplugged my infusion machine and went over to the next aisle to visit with my friend Rick. While visiting, I met Janice and her husband Mack from Philadelphia. Mack is getting treated for Lymphoma. He has had the hardest time with complications, but is well on his way to recovery from those complications, and is responding to his treatment. My prayers are with Mack and Janice. While talking with Rick, he, never one to let a opportunity for a funny and witty comment pass (he inherited a gracious plenty of these traits from his extremely witty late father, Bill, and his late Uncle Jim.) Rick said, "You know, here we are, just sitting around and talking while taking drugs." "Your point?" I asked. "35 years ago, weren't we were sitting around doing the same thing, only with different drugs!" We laughed so hard everyone in the room looked around to see what was so funny! Nanette had to make us stop to restore order in the chemo room! 1/10/10 House Arrest; Too much time on my hands. Debbie says I’m under “House Arrest.” She’d make me wear an ankle bracelet if she could find one. I’ve spent most of the last few days down at my studio, where I’m isolated and, thank goodness, INSULATED, from this cold weather. I haven’t done much in the way of music except pick around on a few instruments, but I have done some work, including preparations for a proposal one of our business clients asked us to provide, as well as some other work. I also watched Alabama beat Texas (Hallelujah!) to win the National Championship. I’m sorry that Colt McCoy got hurt at the beginning of the game, for two reasons: First, we should all be sorry when anyone gets hurt, particularly while providing entertainment for us [I hope his injury may heal quickly and he return to 100% ASAP!], which is what we all owe each other as humans. Second: Now Texans will be saying all year, “Well if Colt hadn’t been injured, the game would have turned out differently!” We’ll hear that until we are tired of it, which I already am. The game certainly might have been different had Colt been in the game, but he wasn’t, and that is the way the game is played. Some win, some lose; some are winners in spite of losing and some will be losers in spite of winning. It’s what we make of ourselves and how we bear our misfortunes that make us fit for human companionship. Right now, I’m not fit for human companionship, not because of my attitude, but because of my immune system, or the lack thereof. I’ll go back to Hemosapien tomorrow, and he’ll look at my blood-work and see if I’m ready for chemo round number 5, which I was unable to take last week. He and Gooday were going to talk. I don’t know if they have done so, since the last word I got was Friday morning and it being hunting season, I’m sure that by Friday afternoon other priorities presented themselves that took precedence over my case. I understand this completely. Mississippi not only has frost on the pumpkin, but the pumpkin is frozen as hard as a 4000psi mix concrete test cylinder. There’s ice covering the entire surface of the pond and swimming pool, the first time I’ve ever seen this happen. We Mississippians are not made for this kind of weather and resent it highly. It is an affront to our natural sensibilities. I am planning on writing to my congressman about it just as soon as the mail starts running again. I’m sure that Bennie Thompson (D-Mississippi) can get Nancy Pelosi to do something. It should be nothing for congress to pass a bill denouncing the cold weather in Mississippi and shame it into venturing back up North where it belongs. I don’t really mind it cold though, as long as it doesn’t get any colder than 65°F. I suppose the cold is caused by global warming. When it’s cold it’s because of global warming. When it’s hot it’s because of global warming. When it’s lovely outside, it’s because of global warming. “Why waste a perfectly good crisis?” Rahm Emanuel asks. The only certain about global warming are these two things:
Maybe Al could make even more money with a second movie and call it, “Making Money Like a Bandit”, or “How I Stopped Worrying and Learned to Love Global Warming.” Now Al already had a lot of moolah, his father being a long-time US Senator. It seems that one doesn’t get to be a long-term Senator without somehow enriching themselves. Between Al, Sr., and Al. Jr., there was no lack of moolah. (Now just how in the world does that happen?)   Al Gore? I have about as much confidence in him as Al Neuman. They both seem to have about the same amount of substance when they speak! That did it! Now I am on “Al’s” in general. Let’s explore Al’s and see of there are any that are worthy of out attention for their contributions or credibility. There’s lots of Al’s who have made contributions to world civilization and modern society. Some admirable, some not so. Let’s takle a look at some of them.
There’s Al Sharpton. How he has downplayed the very lie that brought him to national prominence is a marvel of media re-invention that should be studied in every university communications program. He is a very marvel of media manipulation. I salute him for his ability to continue to make himself relevant to modern society and for his foresight and chutzpah to seize the moment when Jesse Jackson was caught with pants down, thus abdicating the throne to Al. He is certainly capable of inventing a crisis when one is not handy, and a capable spokesperson and defender of that crisis. I personally can’t seem to reconcile him and the whole Tawana Brawley thing, but excuse me for displaying bad form because I have a MEMORY! Carry on Al. May you serve others as well as you have served yourself!
Al Capone! Now here’s an Al that one can admire for his integrity. He knew what he was. He knew he was a criminal. He was serious about how he handled those who got in his way. He and his colleagues have provided history lessons and business plans for scores of modern gangs on how to operate and defend their very successful businesses. Too bad Ol’ Al forgot to pay his taxes. Too bad he lived before the government passed out free condoms. He sure could have used one.
Al(ec) Baldwin, Here’s a modern day Al that is living proof of why celebrities who have every right to speak out on the issues facing the day should remain silent when they actually have nothing to say. I appreciate that celebrities think they should use their fame for the benefit of mankind at large, but most of the ones who seem to take that job seriously open their mouths and reveal that there is no THERE there. It would be best of they focused on the thing that made them famous, and entertained us rather that angered us, or worse, bored us. Alec is bold though, speaking out about things which he feels are important . . . I just wish he’d get some good advice first. Who does he consult with? Al Neuman?
Al(ex) McCord, from the insipid TV reality show, THE REAL HOUSEWIVES OF NEW YORK. Here are people who have more money than sense. Here are people who have more money than sense. Here are people who have more money than sense. It cannot be said enough.
Al(ice) B. Toklas. Perhaps the first and only lesbian Al on this list of Al’s. She was Gertrude Stein’s lifelong companion and an author in her own right. Her published recipe for hashish brownies is still a college favorite. Some say the word, "Toke" was a play on her name; though I think that is purely anecdotal. She was not an un-influential person.
Al(jazerra) The hallmark of journalistic excellence. There are some in this country who actually think the FOX network is less credible.
Al Goldstein. A celebrated pornographer. A champion of free press and free speech, even if his work enabled him almost single-handedly to bring pornography into nearly every aspect of our lives, from magazines and TV shows, to advertising, to video games. I have to admit, Al played a major role in defining free speech in this country, not that I like the direction it took, but do YOU want the government deciding what you should read? Taste is a personal matter. If Al’s work offends you, you don’t have to look at it. I am offended by Al Goldstein. Al is unconcerned by this. Look again at his picture to the left. Does he look concerned that he lacks my approval? We must be the ones to choose the materials we subject ourselves to.
Al Qaeda. Here’s an Al that will raise some hackles. These are the old men who encourage disenfranchised young men with the promise of dozens of young virgins for heavenly sex in the afterlife, to strap on explosive underwear and blow themselves up along with all the other passengers on an airliner. Funny how the old guys aren’t willing to do that. They are smart enough to get someone else to do it . . . but they can wave their finger and call us the great Satan, and some Americans tell us that if we would just learn to modify our behavior Islamic extremists would soon come to love us, and the world would be filled with peace, joy, and compassion for all. These men want POWER, and they want it ABSOLUTELY. Al Goldstein should be glad they aren’t in charge over here. So should you!
Al(ferd) Packer. Everyone knows his story. Let’s just say that he had a taste for exotic meats. Like Al Goldstein’s work, this would be a matter of personal taste, but unlike Al Goldstein, Mr. Packer was unsuccessful in arguing his case before the courts. He and the mullah shown above both consume human flesh. Maybe they should eat pork.
Al Lewis, aka Grandpa Munster. What’s not to like about Al Lewis?
Al Yankovich, Weird. He’s actually funny, with an extremely wicked sense of satire. His song parodies and videos are some of the funniest things I have ever seen.
Al Franken. Al got his start as a writer and performer on Saturday Night Live. Somehow, he got himself narrowly elected to the United States Senate. I wonder what Minnesotans could have possibly been thinking? I hope he serves his constituents well.
Al Roker. Everyone’s favorite weatherman? He’s right as often as our politicians, and changes his forecast just about as often.
Al Smith. Uncle Dave Macon had a song about Al Smith. Now if Uncle Dave wrote a song about you, you can’t be all bad, but you can be obscure, as most of you might be wondering, “Who is Al Smith?” and “Who is Uncle Dave Macon?” Al Smith was a four-term New York Governor who ran for president against Herbert Hoover. Hoover won!. He was also the first Roman Catholic to run for president and many felt that this worked against him in the election. Years later, many Americans felt that John F. Kennedy would never be elected president because he was also a Roman Catholic. Oops! I was one who thought that Barack Obama could never be elected president. We all learn as we go along. To live is to learn. The alternative to not learning is, at a minimum, mental death. The next thing you know, someone will be saying Mitt Romney can’t be elected president because he’s a Morman.
Al Kooper. Noted musician and producer who worked with and produced some of the greatest names in music. Not to be confused with . . . Al(ice) Cooper, who managed to re-invent himself and stay relevant in the world of Rock music for nearly 40 years. No small feat!
Al(exander) the Great. Many historians say that Al had the greatest military mind of all time. He died in his youth, long before the miracle of modern medicine
Al(fred) the Great. The second of our Great Al’s. England’s ninth century Saxon king. Successfully defended England against many Viking invasions. The only English King to be so honored as GREAT. He was no doubt a much better king than his grandfather, Ethelred the Unready
Al(fred) Nobel. A Swedish inventor who helped to invent modern warfare by making nitro-glycerin safe to handle. They called it DYNAMITE. He made so much money off of it and felt so guilty he established a foundation that awards annual prizes for medicine, physics, other sciences, literature, and PEACE, for crying out loud. It used to be a terrific honor to get a Nobel Peace Prize, but lately they have been as common as free car-wash vouchers. Al Gore, himself, won one for his highly visible and fiscally rewarding work on global warming, and Barack Obama won one this year for apparently no reason whatsoever. The next wave of 120 second TV pitch commercials may offer a Nobel Prize as an added reason why one should purchase their useless, plastic gadget . . . just pay separate shipping and handling.
Al(ton) Delmore, shown on the left, with his brother, Rabon. One of the most influential brother duets of all time. They were playing a bluesy rock-a-billy-esque music in the 1930’s. Obsucre to some, but worthy of further study by others. Many musicians were influenced by them whether they know it or not.
Al(abama): The great state from which the Delmore Brothers hailed, along with the Louvin Brothers, Hank Williams, Tallulah Bankhead, and many, many famous entertainers whose influence runs deep and long. If I were not from Mississippi, I’d want to be from Alabama.
Al(aska): A beautiful state, but far too cold to suit me!
Al Kaline. Played 21 years with the Detroit Tigers. Had over 3,000 hits and 399 home runs. HE was a hustler! I’ll bet he never used steroids! One of my childhood heroes!
Al(vin) with Theodore and Simon. It seems like they’ve come back around. I still have a 33 1/3 LP VINYL record of Dave Seville and the Chipmunks. I know all the words to the WITCH DOCTOR!
Al(vin) Toffler. He’s the man who let us know that the future was coning at us faster than we could handle it. He was right. The rate of change is accelerating. Alvin’s FUTURE SHOCK was obsolete before the final printing. I learned a lot from him. HE is still an interesting read.
Al(ec) Guinness, Sir: Ol’ Obi-wan himself. A great actor.
Al(exander) Solzhenitsyn: Won a Nobel prize for his book THE GULAG ARCHIPELAGO, which told of the horrors of Stalin’s labor camps in the Soviet Union. Communism, anyone? Maybe you should read that book first!
Al(fred) Lord Tennyson: Who hasn’t been moved by this great poets works? If not, you must have been sleeping through literature classes.
Al Jolson. Actor, Singer, Entertainer. Performed much of his early career in blackface, before it became politically incorrect. Al was in the first full-length talking movie. He had a very long and active career.
Al(Fred) Hitchcock: His work has stood the test of time, still influencing people, therefore it has passed into the realm of ART. The master of suspense who was able to do more with SUGGESTION than with blood, and gore, and special effects. THE TROUBLE WITH HARRY is still one of my favorite movies. He loved to make cameo appearances in his movies. Moviegoers waited anxiously to spot him. On his TV show, he loved to spurn his sponsors and say, "And now, unfortunately, we must pause for a kahm-merrrrr-shallllll interruption . . ."
Al(abama) Crimson Tide: 2009 NCAA College Football Champions. Roll, Tide, Roll . . . and my condolences to you Longhorn fans. Just goes to show you that SEC football is tough stuff. If Alabama hadn’t beaten Florida, then Florida would certainly have beaten Texas, too! Hotty Toddy! Hooray for the Southeastern Conference
Al-Anon: Of all the Al’s shown here, this Al is the one who has probably helped the most people. Many thousands of people owe their lives to this organization. Al Gore would have us think that we will all owe our lives to the stopping of global warming, and perhaps even to him for warning us so eloquently; but that is conjecture, unsupported by facts and scripted by those who would withhold the very information they are charged with collecting and distributing for the use of science. The group at the right, though, actually saves lives. I salute them! Honorable Mention Al's:
Can you suggest more? What has any of this got to do with CLL? Well, being under house arrest, I’ve got way too much time on my hands, am bored, restless, and have enjoyed every bit I have written about influential Al’s. Soon, there will be an Al coming near you. Make the most of your Al when you get a chance . . . you may never get to Al again. 1/7/10 Full Blog Text in Chronological Order If you'd like to read the full text of this blog in chronological order, all 157 pages of it, and read it on paper and at your leisure, you can download a complete PDF file of it right at the link shown right HERE. 1/7/09 No-Kee-Mo I arrived at Hemosapien’s office at 8:00AM yesterday morning to begin the scheduled Round number 5 of my FCR chemo. I was actually looking forward to it and moving one step closer to having the entire chemo course behind me. Having already received the good news in November after flow cytometry of a bone marrow specimen indicated that no detectable CLL could be found in my bone marrow, getting the balance of the chemo and moving on with hopefully several years intervening before any treatment would be needed again was no longer my goal, but my plan. Plans have a way of changing, particularly plans hovering around CLL since there is ever-present, looming and lurking, oppressive presence of complications. C-O-M-P-L-I-C-A-T-I-O-N-S. Compli-cations. Com-pli-ca-tions. Kahm-pluh-KAY-shenz. Sometimes, finding a place to park downtown presents complications. Coordinating a meeting between several busy people is fraught with complications. Dealing with one’s mother-in-law offers a plethora of unforeseen complications. The House and Senate Health Care bills are the literal manifestation of complications. The US Tax Code is synonymous with complications. Inter-stellar navigation even sounds full of complications. Middle-East politics renders ancient complications in modern reality. Carrying a valuable musical instrument with you into the cabin of an airliner yields frustrating complications. Explaining to the arresting officer that the contraband found in your pants pocket is not your is not without its complications. How GMAC can receive billions of dollars of government bailouts, announce that they are still on track to lose billions more this year and still be a sponsor of the GMAC Liberty Bowl is a marvel of complications. The mind of Nancy Pelosi has indicated nothing but vacuous complications. CAP AND TRADE Legislation is page after page of complications. How the government let Freddie Mac and Fannie Mae become insolvent is a wonder of complications. World economics has so many complications as to be merely a phrase, not a practice. Domestic Economic policy offers the same complications. Environmental policy is complications compounded. Proper presentation of a tiny dry-fly attached to a double tapered back weighted line attached to a laminated bamboo fly rod in a stiff breeze has complications of which the un-initiated is unable to conceive. Determining why a 115kV Transmission line went out on the coldest day of the season thus far, leaving 19,000 Alabamians without power and getting it back up and running quickly presents complex complications the average electricity consumer user has no clue about, its cause or restoration; sometimes the guys at the power company scratch their heads in wonder, but not being thwarted by complications, press on to solutions. Chronic Lymphocytic Leukemia has complications, too. Some are complex, some are dangerously subtle, and some are fatally abrupt. How would we learn to face challenges without complications? Complications, though unwelcome, make us better in the long run, if they don't kill us first. Seldom does one who has CLL meet their demise as a direct result of the disease, though this does happen. MERCK has an excellent synopsis of the disease and its complications at this link: http://www.merck.com/pubs/mmanual_ha/sec3/ch51/ch51c.html I am more likely to meet my demise from this disease from a complication than as a direct result. CLL by its very nature compromises one’s immune system. The treatment of CLL can also cause damage to one’s immune system. When one complication meets another, then physicians can find themselves scratching their heads as to how to proceed. I seem to be at a stage of dual complications. My already non-functioning “B” White Blood Cells, called lymphocytes, are the cancerous ones. They multiply rapidly, refuse to die normally as white blood cells are supposed to do, and also fail to do what “B” cells normally do, which is to fight infections. Typically, more and more of one’s bone marrow, over the course of time, gives itself over to the production of these defective lymphocytes, and the marrow no longer produces enough red blood cells or other necessary white blood cells or platelets to allow life to be sustained. Death by this manner would be a directly attributable to CLL. Most CLL patients don’t make it that far; an encounter with a complication ushers them out of here first. I have been fortunate enough to be completely responsive to my chemotherapy, thus no detectable CLL can be found in my bone marrow at this time. That is a cause for celebration. Does that mean I am now off scot-free? I’m afraid not. It’s just not that simple. There are complications. My “B” cells numbers are low. Most of the ones left are GOOD ones, the chemotherapy having killed off the vast majority of the BAD ones, but the chemotherapy is not without its complications, either, having killed off many GOOD ones, too. All of our White Blood Cells are important, else why would we have them? Our amazing healthy bodies do not produce blood cells that we do not need. In addition to B-cells, there are T-cells, Neutrophils, and others. Wikipedia, while not always reliable, seems to have a good description of the various types of white blood cells and what they do: White Blood Cell Types. It seems that I have, as an additional complication (Bad “B” cells before chemotherapy, and now an overall low lymphocyte count in the post mid-stream of chemotherapy already compromising my immune system as a primary complication), now I am dangerously low on Neutrophils. If you went to the link above, you saw that Neutrophils represent the largest share of white blood cells in our bodies and offer our first line of defense against bacterial and fungal interlopers. I have extremely low counts of BOTH types. You’d think that that would make me TWICE as susceptible to an infection, but there are complications on complications. One is at an EXPONENTIALLY greater risk. The line on the danger graph is not increasing evenly as the numbers of these cells decrease; it is no longer a line but a curve, tangential in nature. “Good Morning,” Hemosapien said as he came through the door of the examination room. “I hope you had a good Christmas and New Year’s.” “I did. And you?” “Great!” We then talked a little about hunting and football. Made our predictions about tonight’s game and how Alabama was going to just chew Texas up and spit them out like a undesirable peach pit, then got down to the business at hand. I had already been to the lab and he had the results of the lab work in his hand. He did not look too happy. “No Chemo for you today!” he said. I was completely surprised and taken aback. “And just why not?” I demanded. “Your neutrophil count is dangerously low. Chemo now might take your neutrophil levels to zero, placing you in real jeopardy.” “Don’t you have drugs that will boost neutrophil production?” I asked. “Yes,” he said, but we give them to people right AFTER chemo if they become neutropenic. We can’t give them right BEFORE chemo just to have the chemo undo the results of the booster drugs.” That made sense to me. It seems that a significant number of persons develop a delayed neutropenia (Low neutrophil counts) from one month to six months AFTER chemo. I appear to be one of these people, but the complication is that I am not through with chemo yet. I’ve got two more rounds I must take. There are also darker, more sinister reasons for a low neutrophil count. We refused to consider these at this time. “What do we do?” I ask. “We must wait. I will talk to Gooday and see how this affects the research protocol. You will come back next Monday and let’s see if your numbers are better. We’ll go from there.” I sigh. I moan, Internally, I wail. I told him of other concerns I had, particularly with continuing tenderness in my right armpit and groin area which had been the site of enlarged lymph nodes, those lymph nodes now diminished in size to normal, but the soreness still there. He checked me over, tapped here, thumped there, placed a cold stethoscope on my chest and back, and looked at the rash on my chest. “How long have you had this rash?” he asked. “A few weeks,” I said. “It’s nothing but dermatitis. I’ve had it for years on my face and my chest. I seems to come and go with the seasons, particularly the transition from fall to winter. I went to a dermatologist once about it, and he said about a third of the people he sees come to him for that,” I said as I scratched my chest, it having come to my attention and was itself demanding my attention. “I haven’t been bothered with it for several years, but it seems to be back with a vengeance. I guess the chemo has exacerbated it somewhat.” “This rash is not dermatitis. It is fungal in nature.” “Nah. It’s just dermatitis, I tell you.” “Are you arguing with me, again?” He asked. I yielded, the wind already out of my sails. “No, I’m not about to argue with you.” "Fungal infections are one of the primary responsibilities of neutrophils. This will not get better on its own because you have no internal weapons with which to fight it off.” He then told me what to get at the drug store, stating that any selenium containing shampoo would be beneficial, and Tinactin on the places that seemed to be tenacious. He was right. The Tinactin has been a great relief. An all over body wash with the selenium shampoo is coming this morning as soon as I get this published. I asked him about the HINI vaccination and the regular flu vaccination. “Right now,” he said, “you don’t have enough white blood cells to develop the anti-bodies for the immune response the vaccination triggers your own body to produce. You absolutely cannot take the “live” strain of the vaccine, and the “dead” strain of the vaccine is not only less effective, but useless to you in your present state. If you wanted to take it for its placebo effect, you certainly can.” “I prefer my placebos to have full effect. They cannot work efficiently with one knowing in advance that they are placebos.” “They might,” he said, then paused, adding, “and then again they might not.” Continuing, he said, “Here is what you must do in the meantime: You have no immune system. You must go home and stay there. Home is the safest place for you. A hospital environment offers exposure to all sorts of microbial things that are just waiting for an opportunity; you are the embodiment of that opportunity. You should avoid contact with other people, wash your hands constantly, avoid any uncooked foods or fruits. Even the mere CONTEMPLATION of sushi, raw oysters, a sunny side up egg, or a rare steak represents a real and present life-threatening danger for you. Crowds are out, hand-shaking is out, mask wearing is in if you go out but going out is out; staying in is in, and I’m not kidding.” He looked at me with as stern a look as he could muster, which is not very stern, he needing more practice with that and me thinking that I could help him one day as this is something I can teach very well; but he looked sterner than he had ever looked, which was clear enough for me to get the message. “My son-in-law was just diagnosed and confirmed with H1N1.” I said. “Then your daughter and grandbabies have all been exposed, and you probably have, too.” “I can’t even see grandbabies?” “Nope, not even grandbabies.” That, my friends, is a bitter pill. So here I am, alone in my studio, wishing that I could sanitize myself with alcohol (an internal sanitization!), but unable to do so for two reasons:
If the weather indeed turns bad and we are called, it could be that the power-lines we put back up and the power we restore could be YOURS. If that is the case, know that I had a hand in it from my home-base. Any other time, I would have been the first one out on the frozen ground with some automatic splicing sleeves in my hand. Not today. Not tomorrow. But I can talk on the phone. Being so immuno-compromised that even wireless communication represents danger is carrying things just a little too far. In the mean-time, I sit here, itching and scratching, wishing you could visit, but . . . . maybe not today. And if we do meet, excuse me if I don't shake hands, which is as foreign to my nature as anything I can think of. Complications! Why did I think I would be untouched by any? I'll stick to my original premise: For every bit of good news with this disease, there will be an offset. I mourned yesterday about this complication. Today, I am just itching from the rash. This writing brings SUCH release!!!! Author's Note: Where Hemosapien and I have actual conversations, for the sake of writing, these are offered as actual dialog. Some of it is actual. Other dialog is accurate as far as my memory can carry me, but not literal. I place words in BOTH our mouths which may not actually have been said, may be paraphrased, and may be purely fictitious. It is not my intention to put anything in here that is inconsistent with good medicine, or to attribute any words to Hemosapien which he would NOT say, though the possibility exists that I might have done so. I hope he will let me know if I do. He has earned my trust and respect as my physician. This is MY blog and I'll write it as I please, but I sometimes take dangerous risks. The reader has again been warned. 12/26/09 A Sad State of Affairs My Facebook friend, Rachelle McClendon Carver said this on a Facebook post. This is a wonderful piece of writing. Funny, sad, sarcastic, stinging, indicting, worthy of Mark Anthony, could be truly spoken by well-meaning but severely misguided people, says everything but says nothing, speech designed to conceal, revealing nothing about the speaker other than the speaker’s castrating spinelessness:
Jim Taggart (Atlas Shrugged) could have said this in a speech while Ellsworth Toohey (The Fountainhead) was listening in to assure his political correctness.
The omnipresent President Obama, appearing on TV after the “historic” Senate session on Christmas Eve (How many “regular” people worked on Christmas Eve, and why is the Senate working considered “historic?” It may be U-N-U-S-U-A-L, but HISTORIC?????), hailed the great Democratic victory and passage of the health care bill, as if he were signing a final bill into law, which is absolutely NOT the case. He should have brought along his Nobel Peace Prize to wave around for the cameras. I’m sure my “iffy” speech will get my name on Rohm Immanuel’s bad list, somewhere deep in the bowels of the White House.
There are several major differences between the Senate bill which was passed, and the House bill which has yet to be voted on. Many congressmen, Republicans, of course, and more than a few Democrats, the memories of hostile town-hall meetings fresh on their minds, facing their own re-elections in 2010, have indicated that they will not vote for the bill once it is presented on the House floor, nor do they see a chance to work out the differences in the two bills as presented.
There are several conservative democrats who are extremely uncomfortable with the clauses in the bills which allow for taxpayer money to be used to fund abortions. We’ll see if they can be bribed on that issue. It’s a woefully lamentable thing for Mary Landrieu (Democratic Senator from Louisiana) and others to be bribed by their own party to vote for a bill their own party says is “vitally important,” and others to vote for the bill if language is included which EXEMPTS their states from compliance with certain parts of the “Vitally important” legislation. (If is “vitally important” for the nation, why is it not “vitally important” for Nebraska?
It is a completely different matter to take a stance based on one’s personal ethics and then allow those personal ethics to be shuffled unceremoniously to the back of the bus for a bribe. If one’s ethics are for sale, then those ethics aren’t very closely held, and that person is certainly not very ethical. If not as ethical as one says, where does the line of one’s ethical standards and behavior get drawn, and how much money is required before the line will be moved?
“Just keep silent about it,” White House power brokers said to a Michigan Congressman. Not only was he not silent, he appeared to be livid.
I am reminded a Winston Churchill anecdote which I suspect is far more anecdotal than actual, however it certainly sounds like something he might have said:
Sir Winston leaned over and asked a certain lady, “Madam, would you sleep with me for a million pounds?”
“Why, certainly, Sir Winston!” the lady remarked.
“Well, would you sleep with me for fifty pounds?” he then asked.
“Why, of course not!!” she said in a huff. “What kind of a woman do you think I am?”
He then replied, “We’ve already established that! Now, we’re just haggling over the price!”
P.J. O’Rourke called them the, “Parliament of Whores!”
They should all be sent home. Yours, mine, ours, everyone’s. They only exist to serve themselves!
Here's my wish for you: May the light of JESUS so shine upon you that you are overcome with His peace, His love, His knowledge, and His grace. I wish this blessing upon you in spite of any previous and closely held personal religious beliefs or lack thereof you may or may not have at the present, may or may not have held in the past, or plan to hold in the future. Does this mean that I reject you if you do not believe like I do, or if you reject my blessing just offered, or simply cannot receive it in the manner that it was offered? No, we humans rejected Jesus when he was here to deliver his message in person. What has essentially changed?
We are bound to each other. We must each walk in the light that we have received . . . we cannot walk in any other!
Many blessings upon you in the coming new year, 2010 AD.
12/25/09 What Have We Bound Ourselves to?
Why would we bind ourselves to anything less than the Christmas Spirit?
Families come together. Old friends and new friends unite and make contact. Warm greetings are extended to strangers, doors held open, small courtesies are sent forth in a variety of ways, producing smiles on faces never before seen, perhaps never to be seen again.
Then there is standing in weary tired-footedness in long lines, looking annoyingly at the person in the checkout queue six shoppers ahead of us, the clerk scanning their mountain of items then stopping and calling on the intercom for some non-existent, faithfully incompetent other store clerk to come and get an item for a price check, she making small-talk with the clerk while waiting, and we, eavesdropping on insipid conversations not meant for us, tiring of hearing about her grandchildren, knowing in our hearts that they really weren’t nearly as cute or as smart as the shopper was implying, and noticing the cheapness of the trashy things being purchased for those no-doubt delinquent, snotty-nosed, soiled-pants probably illegitimate children; the un-scannable item FINALLY cleared, the shopper fumbling in her purse for a check book, and slowly, ever-so-slowly writing out a check, then reaching again into that purse, that deep Grand-Canyon of a purse, fumbling all around until several eternal seconds later pulling out her wallet and showing her ID, and we wondering the whole time why in the world did she not have this all ready, she knowing she was going to write a check, and again knowing that she would have to show an ID, marveling at her inconsideration, thinking bad thoughts about her, speculating that no doubt, her worthless check would bounce, and knowing that this would be repeated several times before we get OUR chance at the register.
Then the shopper, oblivious to all those behind, fumbling her way with packages like she thought this was the old days when the CLERK actually loaded your cart for you, fumbles around with her packages, counting and re-counting, looking concerned that she might have misplaced something, STILL IN THE WAY, oblivious, completely lacking in situational awareness, and being very inconsiderate of others. We glare at her. We project bad thoughts onto her and her family. Then she looks up directly at us, catches our eye, and smiles at us. We, though agitated, automatically smile back, all of our bad thoughts about her and her family vanishing, and we suddenly feeling guilty about having thought those things, about having actually wished bad things upon her, realizing that she loves her family just as much as we love ours and has every right and reasonable expectation to do so. We lower our eyes. In our hearts, we ask the Lord to forgive us of our bad thoughts and are thankful that those bad thoughts did not lead to bad behavior. We seem so petty to ourselves. We are ashamed.
Then behind us, a shopper also in the queue asks us about one of our selections, and we, the expert, tell them all about it in such a way that the shopper wistfully gazes off into the distance as if daydreaming and says out loud, “I sure hope I can get me one of those one day!” Upon hearing this, for some unexplainable reason, we enjoy this approval from an unknown person and become so pleased at our own smartness for having made this selection, the envy of shoppers everywhere.
“They are right over on aisle three,” we say, being expertly helpful, smiling, more at ourselves and our superiority of store knowledge, superior to even that of the store’s own employees, than to the flesh-and-blood person right in front of us.
Sadly, they say with a shake of their head, “You must have gotten the last one. I looked, and they are out.”
“Too bad,” we reply, our smile even bigger at having beaten them to the last one, at our winning this competition, at our own superiority as a savvy shopper. Thus satisfied, we look at the item. We look at its theft-proof indestructible plastic packaging, which we read sends thousands to the emergency room every year with nasty cuts requiring stitches, cursing the inventors of such packaging, the socially inferior thieves and shop-lifters whose activities are the very reasons such packaging is required. We continue to look at the item: of plastic manufacture, in plastic packaging, printed in plastic ink, originating in some plastic third-world country run by a plastic dictator, where the workers are being paid in plastic, wear plastic clothes, stand on feet shod with plastic shoes, and feed on plastic food served on plastic dishes, eaten with plastic forks.
The fine print on the back of the package says, “Limited Lifetime Warranty.” We smile at that. Limited Lifetime warranty. What does that mean, though? We read further.
We are able to read and contemplate this without moving a single step forward in our checkout queue. We marvel at the translation from whatever language, and at the person who thought he was capable of rendering this in English. After our initial amusement at the poor English of the Burmese, Malaysian, Taiwanese or what ever person, we realize that this warranty offers us absolutely NOTHING. We can’t return it to the store. We sure-as-hell can’t pack it up, pay postage all the way to Burma for-goodness-sake, and wait for a slow-round-trip ship to get it all the way back to us, and do without this gadget we have desired for so long now thinking that they’d laugh in Burma at the American fool who sent this all the way back there for “inspector ruling.”
We have second thoughts, suddenly remembering all the other broken cheap imported gadgets lying around in drawers that look useful, but are mostly worthless. Is this also one of those things? Do we really need this? Must we have it? No! No!! No!!! Why are we buying this anyway? We have no answer. We feel foolish.
The person in the queue behind us misinterprets all this. He thinks we are looking at this item longingly. He thinks we are rubbing it in that he wants one, and we got the LAST one. He is already irked at the long, slow-moving queue, and now this insult on top. His face turns redder and redder, his pulse races; blood pressure skyrocketing. HE doesn’t want such a thing. It is really a cheap, crappy product. HE is glad that they are out of them, thus preventing HIM from wasting HIM money. We can take that thing and stick it up our royal . . .
We, oblivious to all of this, suddenly awaken from our trance; automatically extending our arm with the item towards him, saying, “Look, if you’d really like to have this, you can take this one. I don’t really need it right now. You take it! After all, it’s CHRISTMAS”
He turns red with embarrassment at his sudden internal dissolution of all the bad thoughts he had been readily assembling. We think his red-face is a cute bashfulness.
He sucks in his breath and receives the plastic gadget from us as if it is the most precious thing in all the world. We can almost hear a tremendous vacuuming noise as he sucks in his breath taking back all the bad things he thought. He turns redder. We smile bigger, mainly at our own generosity and grace.
“Thank you,” he humbly says.
“Merry Christmas,” our reply, and everyone in the entire queue is happy, touched with this magnanimous, superlative display of genuine Christmas spirit.
We finally get our chance with the check-out clerk. We start piling the rest of our plastic electronic, Sri Lankan, Surimanese, Eritrean, Malaysian, Banglaseshian, Dominican Republican sweat-shop items on the counter. The clerk starts scanning like crazy. The fifth item refuses to scan. The clerk tries it again. It refuses again. The clerk tries a third time.
“I need a price check on register 21,” the clerk says into a microphone, her monotonous voice echoing all over the store in an unintelligible high-frequency feedback as unpleasing to the ears as fingernails on a blackboard, or perhaps the sound of a dentists drill.
Recoiling in horror, we look at the long queue behind us. We see the glare in their faces, including the malevolent glare on the face of the person whom was the previous recipient of our overwhelming good grace. We feel violated. We curse them all: in-bred, ingrates, reprobates . . . . all.
The clerk tries to scan the item a fourth time and the register emits a pleasing beep. Everyone sighs with relief. We all smile. In our heart-of-hearts we all wish each other a very Merry Christmas, and health and prosperity, take back all the bad things we thought about each other in the queue, and most particularly: the poxes, anathemas and blasphemies with which we cursed each other as we were searching for a place to park.
We are all human. We are all each other.
Love is what’s in the room with you at Christmas if you stop opening presents and listen. Anonymous, but attributed to a 7 year-old child. 12/22/09 What I Have I have Chronic Lymphocytic Leukemia (CLL), but it is not my master, nor do I serve it. It has a will and a life of its own, makes its own demands, and requires my resources and attention, but it does not have license from me. It does what it does against my will, but it does it within the confines of a paradox; with me serving simultaneously as adversary and unwilling accomplice. I am not thankful about having this disease, but I am thankful for what having this disease has made me more aware of, and I am thankful that this disease is not all that I have. What else I have:
What I don’t have: I could list many things I don’t have. That list could go on forever. Most of the physical things I am thinking of that I don’t have are not things I am LACKING. The metaphysical ones are where the real lack is. I refuse to dwell on the things I don’t have and further than the approaching exclamation point! 12/13/09 The Cost of Chemo “The question isn’t who is going to let me; it’s who is going to stop me.” Ayn RandI suppose she is my all time favorite author. I was introduced to Ayn by my 11th grade English teacher, Peggy VanDevender. Peggy introduced me to so much good literature; I am grateful to her. I haven't seen her in 30 years, but I still owe her much; such is the influence of teachers in our lives. I have enjoyed books since being a child. They are still good friends. I remember when Peggy handed me a copy of Anthem and told me to read it, that my initial thought was that this could not be much of a book since it was so short. How wrong could a person be? After I read Anthem, I went straight to Atlas Shrugged, then The Fountainhead, then We the Living, and on to read all of her non-fiction, even subscribe to her newsletter. I was an avid Ayn Rand fan, and still am. She powerfully influenced my thinking. What was it that drew me to her so? I was already a conservative capitalist Republican as a teenager. I tried my best to be liberal as my college professors indicated a normal, right-thinking sane modern person should be, but I was unable to bend myself in that direction. Ayn Rand gave me a voice. She gave me rational thought. She enabled me to stop seeking the approval of my peers, parents, society, teachers, and others, and provided me with the means to stand on my own two feet, declaring, “Here I stand and will not be moved!” She helped me to grow up and become an adult. I owe her a lot, and she is still fascinating reading. Over the years, The Fountainhead has become my favorite. I am drawn to try understand Gail Wynand and Peter Keating. Peter Keating is the most pitiable of all people. I don’t fully know if Ayn Rand influenced Sinclair Lewis, or if Sinclair Lewis influenced Ayn Rand, or if they arrived at similar places at similar times independently, but Ayn’s Peter Keating and Sinclair’s Elmer Gantry could have been twin brothers. And Ellsworth Toohey? I think he is the most evil character in all of fiction; and that’s saying a lot. If he has an evil twin in literature, it’s Orwell’s Big Brother, and that’s also just about as evil as you can get. I’ve had many people chastise me for being such an Ayn Rand fan over the years, asking me, “But she was an avowed atheist! How can you be a fan of hers and reconcile that with your Christian beliefs?”. The idea that I can’t be a Christian and like Ayn Rand is laughable. Jesus loved Ayn Rand as much as anyone else. Why can’t I love her, too? Does being a Christian require me to only read things that I know in advance will not challenge what it is that I believe? Is my faith strong enough for the challenges? It better be, because my faith gets challenged every day. It is the way of this world and seeing through the glass darkly. Can I not be a friend to an atheist? Who says not? Why would they? What did Jesus have to say when he was criticized because he had friends not considered appropriate by others? There was a time in my life when I was searching for my own faith. It was during that time that I found Ayn Rand. I also found philosophy and Eastern religion. My faith was shaken; but it survived through this period and is stronger for it; no longer needing the approval of others who, on this earth, sit in higher places. Does this mean that I have all the answers? That idea is laughable, too. I am so far from all the answers though I have grown wise enough to know that I no longer need them all; that is what faith is all about.
Mark Twain said: When I was twenty, I thought my father was the most ignorant man who had ever lived. Now that I am twenty-six, I’m amazed at what my father has learned in just six short years.”
Voltaire said: He must be very ignorant for he answers every question he is asked.
Both of those were me. I win that prize. Now, my son is twenty. At least there are questions for which he will admit not having an answer. He is ahead of where I was when I was his age. I do not think that he thinks I am ignorant, but he thinks that he is pretty smart. I respect his values, though; since they say the nut does not fall very far from the tree. He is able to resist peer pressure and use his head wisely; and occasionally, he had heeded unwanted and unasked for advice. I was not thusly enabled when I was his age. I was still searching for me and upon finding me, did not know who that was, needing the approval of those about me and needing that constant reassurance that is never reassuring. Through all of that, there is still ol’ atheist Ayn, gone on now to find out that the God whose existence she denied is not quite as non-existent as she thought. I hope she and God got all that worked out. It is reported that she was very depressed in the years before her death. Who knows what conversations men have with God, in their hearts or out loud in those still hours of midnight when they see their own earthly demise rapidly approaching? I cannot judge this. I will not judge this. It is not my job. I will let the Great Judge decide. He is unable to make a bad judgment. He always does the right thing. I can and do have the greatest confidence in that. I am relieved of the responsibility.
You’re gonna need somebody on your bond. You’re gonna need some body on your bond. Well late after midnight When death comes creeping in the room You’re gonna need somebody on your bond If this thought occurred to Blind Willie Johnson, I don’t know why it could not have occurred to Ayn Rand, late after midnight, when death came creeping into her room. I do know this, if we call out to God, He is faithful to answer. So now we get around to why I started all this with an Ayn Rand quote. The medical industry can certainly bill you, correctly they assure you, for what it is that they DID, thus you can know its cost after you have incurred the fiscal obligation. But there is no way you can easily get information about the cost of what it is they are going to DO. They entire industry is simply not set up to answer this question. If you can get to the right person, it can be done, but getting to that person who will take the time to do it is difficult. Getting to the person who can take the time to do it, and guarantee that what they are telling you is accurate is even more difficult, if not impossible. Hemosapien gave me some idea about what drugs I would be taking during chemo, and in what amounts, and some indication of what those drugs might cost. He could not tell me for sure, so I decided to ask one of the ladies in the billing department. She promptly told me that without the proper billing codes there was no way she could tell me. I go back to Hemosapien and was unsuccessful in getting the codes for the planned procedures from him. I am persistent, though. If I had an unlimited coverage insurance policy, which I had just a few months prior to getting diagnosed with CLL, I would not have worried about all this. But my insurance changed just before my diagnosis, to a $100,000 annual/$1,000,000 lifetime limit. That made things different! When I first started making arrangements to go to see Gooday at Big-as-Texas Cancer Center (BATCC) I spoke to a nice lady named Raquel who was setting up all my appointments and verifying my insurance coverage. We discussed my $100,000 annual limit. “A $100,000 annual limit is not very much coverage when it comes to treating cancer,” Raquel said, “But you can do it if you manage your insurance resources.” I heard her loud and clear. I appreciated that advice then, and I appreciate it now. It was some of the best advice anyone has ever given me. Thank you, Raquel, for your concern for the patients at BATCC, and for helping them to learn to manage their resources. Does your insurer appreciate your managing your resources? Absolutely not. They could care less. They will pay what they will pay, and when you reach your coverage limit, they will still simply stop paying. I had already envisioned myself in the following scenario. “Listen, I have worked devilishly to manage and control every dollar of my insurance resources, and now that I am at my annual limit, how about a little extra consideration. You have no idea how hard I’ve worked, or cajoled, browbeaten, lied to, prevaricated to, sworn at, and castigated others to do so. It only seems fair that after such hard work, I would get at least SOME extra consideration,” I said into the phone. “If you would like to continue in English, press 8. Para continuar in Espanol, numero nueve,” the automated attendant said, waiting silently for my response, and when none was forthcoming said, simply, “Goodbye!” I stood there looking at the phone receiver in my hand, scratching my head in perplexity. I actually did get a person live on the phone at PPO Plus once. I asked them to tell me what kind of discount they had under contract with Hemosapien’s clinic. The response? “That contractual information is privileged and is between PPO Plus and Hemosapien. We cannot divulge that information. And even if we could, I would have to have the actual treatment codes to determine what the actual discounts were for each procedure,” the young man said on the other end of the phone. I worked him over so hard he was beginning to yield. “You mean that the information which I receive from both PPO Plus AND from Hemosapien on my monthly statement, which is listed plain as day on both of those statements, which show the discounts for services previously rendered, is privileged, and you can’t tell me what it is, yet nevertheless it is made known to me after the fact by yourselves and the people whom you seem to be trying to protect under the guise of a contractual obligation?” “Yes sir,” he said, now somewhat sheepishly, perhaps recognizing where I was headed with this, and how ludicrous it was. “If you can tell me afterwards, and you do, then why is telling me in advance privileged?” I asked, knowing that I had him there. He was sweating bullets by now, I could tell, me having boxed him in to a dangerous position he knew he could no longer defend, and me wasting my time on someone with no authority or ability to answer my question. He must heave read my mind and very wisely said, “Sir, I will have to let you speak to my supervisor.” I foolishly agreed, and he transferred me. I got someone’s voice mail, left a furious message, tried to bail out, somehow got the automated attendant which said, “Para continuar in Espanol, numero nueve.” I’m glad my mother was not present. I was swearing powerfully when I banged the handset on the wall several times and then slammed it back down on the phone so hard the entire phone came off the wall. I swear I could hear giggles coming from the speaker on the handset, PPO Plus no doubt having me on speakerphone, an entire group gathered around the young man’s office cubicle, sipping coffee and being thus entertained by my frustration. Now getting those codes can be difficult. The CPT (Current Procedural Terminology) codes are universally used by insurance companies, hospitals, doctor’s offices, and anything medical to bill you and file your insurance. I had earlier asked Hemosapien for them, but he looked off into the distance, politely declining to give them to me, saying that he did not do that, that he had people who worked there whose responsibility it was. “But those people work for you. You tell them, ‘Give Chris the codes’ and they will give them to me,” I replied, not thinking that this would be difficult. “Perhaps you should look and see if you can get these on your own,” he said, gazing off into the distance, like this was a very uncomfortable conversation for him. I was perplexed. Why should this be difficult? I then underestimated Hemosapien, thinking that somehow he thought that my goal was to determine their profit margin on medical procedures. I am too much of a capitalist for that. Of course his clinic has a profit margin. How else would they pay their rent, overhead, employees, insurance, taxes, etc? No, that was not my motive, but I thought that he thought that it was. I know better now. In any case, the sheet they give you at the clinic when the doctor is through which you turn in at the front desk has all those codes (or MOST of them!) I have already explained in a previous chapter how I realized that what I had asked for was right in my hand, and got a nice helpful lady to make a copy of it for me. I sit down yesterday and start a spreadsheet so I can deliver the promised information to the readers about what all this COSTS and realize that the sheet I have does not have ALL the codes on it. There are some codes for which charges have been incurred which are not listed on the sheet. Where go but to GOOGLE. The search yielded lots of irrelevant information, or at least information irrelevant to me, about CPT codes. I keep getting directed to sites that want to charge me money for these codes when I finally discover the American Medical Association website. Turns out that the CPT codes, which are universally used on everyone’s health billing and insurance papers are the copyrighted, proprietary information of the American Medical Association. If you want all the codes, you can purchase and download the list, but you have to accept a licensing agreement which has all the usual boilerplate that basically says you have no rights whatsoever. They do have a page on their website where a patient can go to enter specific codes to find out what that medical procedure is. From the reading, it seems that they were shamed into providing this portion of their site for use by patients. Again, there is a licensing agreement. To use that page, I had to agree not to share this information with anyone else, nor publish it, nor in any way dissimulate or distribute the copyrighted, proprietary information owned by the American Medical Association, and was agreeing in advance to pay their court costs and reasonable attorney’s fees should they feel it necessary to sue me for violating the licensing agreement. Why this information is proprietary is beyond me. Their use affects everyone in the USA who receives medical services of any kind. Something this universal and pervasive should not be proprietary. The money with which I pay for the services identified by those codes is not proprietary (well it’s proprietary in the sense that it’s MY money, but it is universally accepted.) Why the AMA would rather you not have access to this information is perplexing to me. Why my insurer cannot tell me in advance what the PPO discount with a particular health care provider is , but can tell me after the fact is also perplexing to me. Here again is a case of being able to tell to you what they DID, but not what they are going to DO. Why Hemosapien did not want to give me those codes is no longer perplexing to me. He is an AMA member. He knew those codes were proprietary and that I was not privileged to that information. My underestimating him was in thinking that he underestimated me. He knew that I was not trying to determine HIS cost, but MY cost; he was unable to supply me with the CPT codes and not willing to say why, just a, “Perhaps you should see if you can find them on your own,” which I did, thus learning his real reason for his reluctance. If I am wrong about this, so be it, but I don’t think so. S-H-A-R-P is my NAME, and if I can get enough dots on the page, I can figure out how to connect them. Of course, I’ll use a pencil, and may have to re-draw my line a time or two, but eventually, I’ll get them connected. At every turn, I have been thwarted by those who would not let me proceed, but I am persistent, and persistence pays dividends. I was completely unsuccessful in determining my chemotherapy costs before I had the chemotherapy; that was my primary goal, thus I was defeated. Being able to report it accurately to the rest of the world, since this information existed nowhere that I could find was an ancillary goal, but one at which I have succeeded. Thus for all of posterity, and for those who are interested, to follow are several spreadsheets, LESS THE PROPRIETARY CPT CODES which belong exclusively to The American Medical Association, which does not want me to divulge them on this forum, or use them in any manner other than personal. Would a personal vendetta qualify as personal????? Before I proceed, the question remains as to how one can manage their medical expenses. The answer is, CHALLENGE EVERYTHING. If your physician suggests tests, procedures, etc.:
Have I been successful? Mostly, I think. I have learned a lot and am still learning. I have learned to trust Hemosapien. I have learned to trust his office people. I have learned that I cannot bend everything to my will, but that I can bend some things and extrapolate the rest, though my extrapolations can be filled with errors, I will correct them as I get to closer to the truth. Everywhere I turned, no one would let me! The question, though, is not who is going to let me, it is who is going to stop me? Thank you, Ayn Rand. I prayed for you before you passed. I don't know why God would not have honored my prayer. It is with great faith that I believe He did. Eternal peace is what I wish for you now. You will need ADOBE READER to look at these PDF files. 10/14/08 My first visit to Hemosapien. Includes the cost of the Bone Marrow Biopsy 10/21/08 My second visit to Hemosapien when I got the official bad news. 11/18/08 Hemosapien. More bloodwork to determine the extent and nature of my CLL. 1/10/09 First visit to BATCC Here's where I met Gooday and Staff. I must recover the documents and update this soon. My memory is pretty good though. 1/15/09 Follow up with Hemosapien after my visit to Texas 4/14/09 Three-month check-up with Hemosapien. I was on Watch-and-Wait then. 7/15/09 Next three-month checkup with Hemosapien. Watching and waiting was over now! 8/10/09 To BATCC for my first round of Chemo. Expensive, isn't it? More detail when my next insurance statement comes in. It took BATCC months to file this. 8/17/09 Follow-up with Hemosapien. Bloodwork to see how my body was coping with the Chemo. 8/28/09 More Bloodwork with Hemosapien. 9/08/09 Chemo Round 2 with Hemosapien Seems like a bargain compared to Round 1 at BATCC, doesn't it? More on this below. 9/22/09 Follow up with Hemosapien after round 2. 10/06/09 Chemo Round 3 at Hemosapien's 10/15/09 Follow-up with Hemosapien. 11/03/09 Mid-Point Bone Marrow Biopsy This was to determine exactly how I was responding to the treatment, which gave me very good news. This was supposed to have been done at BATCC, but I was able to have Hemosapien do this, saving lots of money. 11/04/09 Chemo Round 4 with Hemosapien. This was also supposed to have been done at BATCC. Thanks to Hemosapien and Gooday for agreeing to let me do it at home. THis was also when Gene Bush and I entertained the patients in the Chemo Room. I notice that I did not receive any sort of discount for that. Funny! Entire WHAT-IT-COST Spreadsheet The entire spreadsheet is here, rather than split up into pieces as above, if you want it.
It seems that my first round of FCR Chemo at BATCC cost nearly $40,000 before discounts. That makes Hemosapien look like a real bargain. Typically a round of FCR chemo at Hemosapien's was $17,000. In BATCC's defense, I understand that it costs more to take chemo in a hospital setting, which is exactly where I was when I took it. There are also city and state adjustments to the charges allowed by insurers using the CPT codes, and the City adjustment for Meridian, Mississippi, is no doubt substantially greater than the one for Houston, Texas. Still, BATCC and Hemosapien are working TOGETHER on my behalf, and I believe I am getting the best care possible, for the best possible price. I can take my chemo treatments in the hospital in Meridian, but it may cost near to what it costs at BATCC. I am happy with the Chemo room at Hemosapien's, though I was not so at first.
BATCC did have free coffee. That free coffee was no bargain. Hemosapien showed me where their employee coffee pot was, and when I played music there during chemo round 4, everyone was bringing me coffee, candy, snacks, and just whatever I needed. Everywhere and at every turn, the health-care professionals who are caring for me have been gracious and as helpful as they can possibly be. I have learned that when I am asking for things which are outside of the their normal way of doing things, they simply do not know what to do, or how to answer. This is true from Gooday and his co-workers at BATCC, to Hemosapien and his co-workers at the clinic in Meridian. The medical system, as it is, is not prepared to deal with things in any manner other than the awkward way that is in place. This is not a reflection on any individual.
Doctors despise having to deal with insurance companies. Doctor's even dislike the way the very association that represents them, the AMA, define some things in the CPT coding, which insurers use to deny payment, or discount payments drastically to doctors. I found this when I was searching for the CPT codes. Patients despise hospital and physician charges precisely because their inability to understand the bills makes them wonder why everything costs so much. We despise dealing with our own insurers. Everyone has an adversarial relationship . . .except . . . except for those who do not have to worry about paying for anything; they being less affected.
The uninsured person who goes to the hospital emergency room for an actual emergency or because he simply has a stomach ache or a cold, and has no intention of paying for any of the services he received, could care less about the whole process. Hospitals despise that, too. They despise having to charge me more to pay for those who don't. This is the equivalent of a tax on me and my insurer. It is foolish to think that it is not.
Everyone seems to despise the pharmaceutical companies, though I am thankful for Roche/Genentech's Rituximab, which is truly a miracle drug. Roche/Genentech will tell you that it cost them millions and millions of dollars to develop this drug, test it, pass it through the FDA, and that they must recover their money and make a profit for their stockholders BEFORE their patent runs out in 17 years (the life of a patent). This is true; but I wonder what Rituximab costs in Canada? in Greece? in Britain? In Thailand? If any reader has this information and would share it with me, I sure would like to know. I do know that it is unfortunate that Drug companies have lobbyists, and run political action committees, and make huge campaign contributions to those that would govern them, and those governors accept the money. Integrity demands that this be stopped, but who will stop it when we all re-elect our own senators and congressmen because they can get the ear-marked money brought home to their districts. We should all be ashamed. And, by the way, if we didn't have the drug companies, where would our new drugs come from? The GOVERNMENT? There is no easy answer.
If two presidents and Congress can't fix it, or even agree on how to fix it, how can we as individuals? I fear if they are successful in their attempts it will be even more unwieldy and awkward than it is now, with doctors, patients, health-care facilities, and insurers having even less room to maneuver. What is a big, nearly unmanageable mess now will be prohibitively perplexing, meaning that government social bureaucrats will be making the decisions about our healthcare because they are the only ones SMART enough to be able to tell us how things work. This is a terrifying thought. See the House Health-Care Bill HERE! See the Senate version HERE! Do you think these will simplify matters? I see an entire new bureaucracy springing up, and entire larcenies of health-care attorneys and professionals just to advise us, direct us, counsel us, and see that we get the health care we deserve if it's prudent (for whom??), or NOT!
The more Federal money we allow to come our way, the more strings that we find attached to ourselves, and where there is a string there is someone in Washington pulling on it. What happened to our independence? And, how did the government get to be our benevolent keeper? As a nation, we are taking on obligations we can no longer continue to honor. We have voted ourselves wealthy from the public largesse; yet we are the public, and the Republic, and we cannot finance ourselves, our homes, our health care, our education, our environmental protection, our energy, our public infrastructure, our public works, our drinking water, our recreation, and our retirements on our own backs and the backs of our children. Sooner or later, the government that does this for us will be telling us, "From each according to his ability, to each according to his need." I agree with Ayn Rand, this is the most evil concept that humans have some up with. Of course fascism is evil, they just take what they want from those who are not like themselves and shoot them. The former is more evil because it is more insidiously subtle. It SOUNDS so nice. It sounds so appealing. But it is appalling and shameful.
I would prefer that the government limited itself to dealing with interstate commerce and laws, foreign trade, foreign diplomacy (or other when diplomacy fails), and kept our borders safe; none of which it seems to be very good at.
I am thankful, though. Thankful that medicine has worked like it has for me so far. It has not been easy, but difficult. I will not re-make the medical industry, but I will manage to influence it just a little bit in my own community . . . at least they know me when they see me coming with a file folder in my hand and know that I will not be dismissed easily.
I have also learned that I can get much farther by being politely persistent rather than belligerent. It is a mistake to think that just because I cannot immediately obtain what I am asking for that the person on the other end is incompetent. When they sense that, a defensive wall comes up and one won't be getting much more in the way of help from them. If they, on the other hand, are truly incompetent, I am also able to point that out to them, but use that very sparingly now. You must stand there and not be moved. Martin Luther said, "Here I stand!"
Enough for now. I am exhausted. I have written the last part of this in a fit of passion and rage. That means tomorrow, I'll be doing some editing.
In the meantime, one more time: thank you Hemosapien, Nurse Jessica, Gooday, Nurse Alice, Nurse Susan, Nurse Juanita, and the kind parking valets at BATCC's hospital, and everyone who has taught me, helped me, fetched for me, did favors for me, indulged me, overlooked my impatience, and was kind to me, sometimes when it was not deserved, and mostly when it was above and beyond the call of duty. I am humbled by your commitments to the patients you serve.
I am hard to stop when I get going. Who will stop me?
Merry Christmas to you. I know it will be a good one for me!
12/10/09 Stillness
Blaise Pascal This runs so deep. What a thinker, that Pascal! We run from ourselves, from diversion to diversion, afraid to be alone with ourselves for a single minute. Are we afraid of boredom? Are we afraid of contemplation? Are we afraid of ourselves and what we face without those diversions? Are we ultimately afraid to be alone with ourselves because in the stillness, we hear that still small voice? Do we prefer the whirlwind? Do we prefer the firestorm? Does the sound of that still, small voice annoy us? Does it frighten us? Does it speak to us when we look in the mirror? What does it tell us then? Does that voice condemn us? Is it our own voice? Is it the voice of God? If it is condemnation we hear, what is it in us that it is condemning? Why do we have it? Why do we tolerate it? Why can't we get rid of it? Why does it hurt us so? What is it in us that makes us cling to the things that we would rather shed like a snake sheds its old skin? Why? Why? and Why not? Ed Dye* was the first person in whom I recognized the ability to sit absolutely still, all alone, lost in his own thoughts. There were others, earlier, but I did not recognize them then. Sometimes when Ed was a guest at Timberview Lodge, I would watch him from my house as he sat on the slope of the hill, facing the West as the sun went down. He would just sit there. He would sit and then sit longer. He sat as the sunlight shifted wavelength from white, to ochre, and finally to red; long shadows falling behind him, and long shadows of the white oak trees reaching towards him, reaching, reaching, encroaching, encroaching, his face glowing with the last rays of ebbing light, until finally the sun dropped below the distant horizon and the western sky became a blaze of red and gray. Then he would just continue to sit here. Of course, it was summertime when this occurred. Ed would not have sat out in the cold for an instant! I watched him, from a distance. I watched him with great curiosity. I watched him with great delight. I seldom would disturb him when I saw him like this, knowing somehow, that this was a sacred, almost worshipful time for Ed, though, on more than one occasion, I joined him. I remember one particular time. Seeing Ed thus, rather than drive up to the Ridgehouse, I walked around the back way and came in from behind him; me huffing and puffing from the climb I had to make to get there (We don’t call it the RIDGEHOUSE for nothing!). As I approached from behind, he did not turn or call out. Fearful that I might frighten him, I called him by the nickname I had for him. “Hello, Ellwood!” “Hey!” “I thought I’d join you.” “Have a seat," he said, motioning with his right hand to the ground. "How was your workday?” “It was fine . . . uneventful,” I said, seating myself beside him in the grass. My dogs sat in the near distance, near Ed but not too close, like he was the pack leader and they just pleased as punch to be able to lie on their backs nearby and lollygag about in the sunshine in his presence. That was the extent of our verbal conversation, though for the next hour or so we seemed to be talking non-stop. Thoughts raced through my mind. Silently, I’d ask Ed a question, and he’d answer. Silently, he tell me some interesting bit of trivia, and I’d laugh. I’d offer something silently profound which the trivia had prompted, and we’d discuss it in silence: religion, politics, world affairs, philosophy, books, music, how we perceived music as performers, how we bombed in our performances, how we waxed sublime in our performances; and just how glad we were to simply be there, at that point, at that time, in that infinite space; seriously not taking ourselves seriously; simply being there in silence. Simultaneously and out loud, the time for silence being past, we burst out in laughter at each other, knowing that we were thinking the same thing: our tiny irrelevance in the grand scheme as we sat watching the sun stand still and feeling the Earth turn under us as evening rapidly approached. The magic also past, Ed said, “A while ago, Debbie was making some chicken salad out of the rest of that chicken you smoked yesterday. Do you think we might go and get a bite?” “Sure,” I said, hopping up, suddenly as ravenously hungry by his suggestion as a hound after a hunt. We sauntered off towards the light of my house, the dogs joyfully running about, snapping and growling at each other in that playful manner that dogs have, Ed and I stepping as light on our feet as the dogs, thinking about our chicken salad sandwiches, and not thinking about the things that normally worry human beings, those things now lost in the insignificance that is ourselves; the chicken salad being the only thing of importance, the only thing worth thinking about, the object of our dearest, and most secret inner desires . . . soon to be fulfilled. “One more thing,” said Ed. “What?” “I sure would like some of the Major Earl Grey Mango Chutney to go with that sandwich,” he said. “Then all you lack in life will soon be in your hand,” I replied to Ed’s smile, with just enough day-light left to illuminate his white beard, the whites of his eyes, and his teeth, all glowing in the near darkness. We later decided that we had never had a sandwich that tasted so good, or satisfied so completely. After many compliments, Debbie wearied of them and declared, “It was just chicken salad.” But we knew better. Somehow, it was far more than just chicken salad; almost like it was the physical remnant of the day’s sunlight taken internally as bodily nourishment, and it was taken with great thanksgiving. “What’s all this got to do with Chronic Lymphocytic Leukemia?” you may be asking yourself. You should know better than that by now. Old Blaise set this off. He also said this: I have made this letter longer than usual, only because I have not had the time to make it shorter. Blaise Pascal was a brilliant man. He gave us so much to think about. Just the thing for contemplation while sitting facing the still of the evening sun, feeling the Earth turn under you, watching the daylight steal away. What a fine way to spend a portion of one's finite, allotted time. Is time spent still and silently alone wasted? Maybe alone and in stillness and silence we can contemplate the answer to that. One more thing! Old Blaise said this, too: Belief is a wise wager. Granted that faith cannot be proved, what harm will come to you if you gamble on its truth and it proves false? If you gain, you gain all; if you lose, you lose nothing. Wager, then, without hesitation, that He exists. Old Blaise knew the numbers! He knew when, numerically, mathematically, and statistically, a wager was not really a gamble, but a practical transfer of assets. That, too, is worthy of further contemplation. *Ed Dye is all over this website. Look around for him. He is not hard to find. 12/2/09 Cancer Guilt You get cancer, you feel guilty. You walk into the oncology center and see others with cancer worse than yours, you feel guilty. You respond well to your chemotherapy when others do not, you feel guilty. You get good reports while simultaneously others are receiving the worst news, you feel guilty. Cancer just makes you feel guilty. They say this is a typical response. They say not to worry about it. They say to reject it. They have all the answers. They always have the best words for the worst occasions. Their publishers think their words offer hope and healing. Their publishers also believe that They make their bank accounts larger. They write books and turn them out by the thousands. They write books with fancy, catchy, modern names. They sell millions of these books to millions of people who can’t tell you who Marcus Aurelius was or find Borneo on a globe. They have never sold me a single one. They do not seem to speak to me; though They speak to millions from the forum allowed them on Oprah! and other outlets through the power of TV. They cannot repackage human truth, clothe it in some modern trimmings, infused with all the latest metaphors and metaphysical religious-but-not-religious-pseudo-pop-psychology, and say anything new. While They may have a glimpse of the truth, the glimpse They have is only new to themselves, if then. A really wise man once said, “There is nothing new under the sun.” I think he was right. Am I right? Maybe, maybe not, perhaps not, probably not, but I sure know who Marcus Aurelius was and can find Borneo on the globe. Have I read modern pop-psychology books? No, not yet. Am I going to? Probably not. There are too many classic works I want to read that I have not yet started to waste time on something I think must be every bit as good as one of TV’s new 30 minute sit-coms or reality shows. Have I seen any of them? No. How can I comment on things I have not read, or shows that I have not seen, or even music that I have not listened to? It’s easy to comment on things one knows nothing about. People do it all the time. So there! I still feel guilty, but will stop it any day now. I do know this: I am quick to talk to others with any kind of cancer and have learned that if I’ll just simply be quiet and listen, they’ll tell me all about their disease, their struggles with it, how they’re coping, and they’ll have an eager listener. Sometimes their stories are hard to hear. Perhaps that is what makes me feel guilty. If so, then I will continue to feel that way. The times I feel less guilty are those times I remind myself of what I’ve already written, when at Big-as-Texas Cancer Center I see a masked woman coming towards me down the hall and looked deep into her eyes and saw myself. I saw myself coming and going. When we realize that we are those other people, it must make our guilt seem less. It must give us some relief. It does and yet it doesn’t. The paradox of being thankful and simultaneously feeling guilty is very peculiar. It is what it is. Clever words will not make it seem less, any more than clever words can give someone their life back. I did not sleep at all last night. My tiredness makes me cynical, or rather, my tiredness brings my cynicism out of the cage I normally keep it in. I occasionally let it out on purpose. Occasionally it escapes and is hard to round up and get back in the cage, it naturally preferring the wide open spaces and the chance for human encounter so it can offer its comment during conversation, but I stay after it until it is rounded up and safely stowed away. When I let it out, I seem to be able to control it, but when it escapes, it seems to have a will of its own and is unruly, unmanageable, and belligerently obstreperous. Below are what some OTHERS have said about medicine. I did not say this, nor did I put any words in their mouths, as I have been frequently known to do. This time I’m on the level. I do not feel this way about Hemosapien or Gooday, perhaps because things are going well right now. I may feel different later, when circumstances have presented themselves in an unfavorable manner.
Now THAT is funny!!
I did not think I need to put his name with his picture. If you do not know who he is, STOP WATCHING TV and TURN YOUR COMPUTER OFF, immediately! Go and get a history book to read, for goodness sake!
Now there's a moustache I like!!!
Along with Mark Twain, my all-time favorite writer!
None of these witty remarks are applicable today because of the miracles of MODERN medicine!! 11/30/09 No Catharsis Necessary I extend my sincere apologies to all you readers; I have neglected you, shamefully so. I have stated before that the writing of this blog has been cathartic for me, but no catharsis has been necessary, yet still there is much to report. First: Geno and I put on concerts two days in a row at the chemo center: Thursday, November 5, and Friday, November 6. Everyone was entertained! Not a single complaint, though we were always sure to be in tune and in time, two of the most basic elements of music. There were lots of smiles all around. In fact, we were able to rehearse a song that we later did that Friday night on The Sucarnochee Revue. Thanks to Hemosapien, his colleagues and staff, for letting us use their chemo room as a rehearsal hall. Later on Friday, after the final drops of cyclophoshamide, fludarabine, kytril, and decadron entered my veins I got this welcome e-mail from Hemosapien: flow cytometry and marrow review look good (no detectable cll). Congratulations. will forward to BATCC (reports only and not slides- see email Nurse Susan 11/3). sorry about the photo. What good news to be sent in such a short e-mail! What good news to be sent in such a small e-mail! What good news to be sent in such a tiny e-mail! What good news to be sent in such a teeny-weenie e-mail! What good news to be sent in such a tee-niney e-mail! What good news to be sent in such a microscopic e-mail! What good news to be sent in such a taciturn e-mail! What good news to be sent in such a dis-loquacious e-mail! What good news to be sent in such an itty-bitty e-mail! What good news to be sent in such a lilliputian e-mail! What good news to be sent in such a quark-ish e-mail! What good news to be sent in such a scant e-mail! What good news to be sent in such a miniscule e-mail! I think I’ll say it one more time. What good news to be sent in such a welcome e-mail! Hemosapien uses words sparingly, or at least, he does so around me. It could be that I am somewhat intimidating, but I don’t think so; he has long since learned me pretty well. He just chooses his words carefully, and does not seem to want to waste a single one. What good news to be sent in such a terse e-mail! Hemosapien’s exuberation actually shows through and through . . . notice the capital “C” in congratulations! Since I’ve received that news? With the blessings of Hemosapien and Gooday and the fine folks at BATCC, I was able to postpone chemo round number 5 until after January 1, 2010. At this point, I will report for chemo round 5 on January 6, 2010, then a round in February, then back off to Houston and BATCC in March for a final biopsy and checkout as part of their research protocol, which is not diminished or damaged by the postponement of the treatment for one month. This stops chemo round 5, which would have put me over my annual insurance cap had it occurred in December, from coming straight, dead-head out of my pocket! I am doubly blessed. Someone one wise once said, “The harder I work, the luckier I seem to be!” Is all of this good fortune because of my hard work? Because of my sincere and stellar prayers, influencing the Almighty with their wit, power and precision? That notion is ludicrous and laughable! I did work hard to manage my insurance resources. I did send sincere and mighty prayers to the highest of the heavens, which I know were heard and answered. Naw! It was not that. It was YOUR prayers. YOUR positive thoughts. Friends like Geno who came all the way fro Nashville to spend the week with me and carry me to my chemo treatments. Friends like my bride, my mother, my daughter, my son, my brother, my step-father, my step-mother, my daddy, my step-sisters, my cousins, my friends, my church family, my fans . . . my readers . . .YOU! All throughout this, I have been borne on this surge of prayer and energy which has come from outside of myself. I acknowledge it, and am truly thankful for it. “But was it not fated to be so?” asks Calvin, who formerly asleep, awakened by the smell of free-will weakness, was now awake and on the attack. “You know, John, it might be so. I can’t argue with you about it. You are far too clever for a direct intellectual assault. I can’t yield, neither can I let go,” I replied, “But don’t take that admission as my acceptance, either.” “Nay, thou art not as resourceless as thou takest thyself,” said Calvin. “Why, thank you!” I said, so charmed by his flattery that I failed to notice that this French theologian, who later took up residence in Switzerland, was speaking to me in perfect King James English, without the slightest hint of an accent. Amazed by this, I asked, “What’s up with the English accent?” “Funny you should just now notice it. I’ve been using it on you for quite some time. I’ve been practicing it for years, but seldom get to use it.” “Why use it now?” “You’re the only one who speaks English who seems to want to engage in theological discourse with me.” “Well, I haven’t WANTED to. I’ve sort of been forced into it,” I said. “Now you’ve dropped the King James and are just speaking to me in regular, modern English.” “I save King James English for important theological proclamations! In the meantime, I’ll take my victories wherever they present themselves,” he said. “Would you prefer we speak in French? Latin? Greek? German? Hebrew?” “No! King James English doth serve us both well!” “You know, one of my famous quotes is, ‘Seeing that a Pilot steers the ship in which we sail, who will never allow us to perish even in the midst of shipwrecks, there is no reason why our minds should be overwhelmed with fear and overcome with weariness.’” Calvin said, somewhat smugly. “You said that?” I asked. “I did, and I meant it then, even more so now!” “Thou art full of surprises, aren’t thou?” “Just slightly more so than thou!” “There’s a hand on the tiller that’s steering my ship, that’s for sure . . . sometimes it is my own hand, and it seems so foggy, and the crash of waves on rocky shoals seem so near,” I said, lapsing into a dream-like state, hearing the sound of those waves on the rocks, feeling the salt spray on my face, the ship reeling underfoot, me struggling to hold the wheel straight, and keep her on the wind. “And most times, there are hands that thou canst not see, nor canst thou feel, but they art present, nevertheless. Sure and certain art they when thou art in the midst of faltering,” He said, vanishing, leaving me to chew on that and anxiously await his return, his anticipated return, but always at he unexpected moment. I called for him, but he was gone! So readers, I apologize for my lack of bloggish-ness. Here you go. There’s more to come, particularly revelations about the cost of treatment, since I have enough information to be to share this intelligently with you. In the meantime, I have been getting on with living, and more-and-more, feeling like my old, former self . . . and that is a good thing, because my old-former-self felt just fine. Thank you for your support. Let me hear from you! Hemosapien still owes me a photograph! Just wait until January! I’ll go in armed with a guitar AND a camera!! 11/5/09 Round-4 Day-1 Geno carried me down to Hemosapien’s clinic yesterday for me to begin Round 4 of the Chemo. It was the day I was to get my Rituximab; a slow, all day process, though it went well. I really appreciated having friend with me and we talked like school girls. I asked Hemosapien on Tuesday before the biopsy, if Geno and I could being a couple of guitars and entertain the patients in the chemo room. He seemed to like the idea, said that would be a first. The nurses say different though, that one time previous, someone brought a guitar and played a few tunes. We don’t want to inflict ourselves on very ill people, but I don; think a couple of songs will bother, particularly if it is not very crowded.
I asked Nurse J to stop long enough for me to get her photo, shown at left. I managed to get this good one while she was telling Gene that I was a model patient and minded her very well. As I told the reader before, I would be as “skint” as the cat in the previous chapter if my wife thought I was out of line with Nurse J. She’s got my vote. So does Nurse Juanita. I did not have any reactions to the Rituximab, which is always good. I then got my anti-nausea medicine and then the Cyclophosphamide (Cytoxan) and Fludarabine (Fludara). It does not take nearly so long to get them. I also got a big does of steroids, which I despise, but must have. I complained about the steroids, and Nurse Juanita called Hemosapien to ask if I could do without them this time. I think that the conversation went like this: “Dr. Hemosapien, is it possible to skip Mr. Sharp’s Decadron with this chemo round? He is really complaining about how the steroids affect him?” might have said Nurse Juanita. “Well, Mr. Sharp should be clearly informed if we give him the Rituximab without giving him the steroids, his possibly sudden and rapid death may prevent any future unpleasant steroid side-effects, and any complaints that he might have about them, but that would be a moot point, wouldn’t it?” might have replied Hemosapien. Nurse Juanita came back and actually said, “There is no way he’ll let me give you this without giving you the steroids first.” I sighed and submitted. Apparently the steroids help to prevent the live mouse antibodies from which the rituximab is synthesized from causing severe anaphylactic shock type reactions in my own body. The thing about the steroids is that they give you a false sense of feeling good. You have energy, no joint or muscular pains; really, you feel pretty good; then they let you down, like a reverse hangover. As they leave your system, you feel worse and worse. Whatever normal aches and pins you did not feel wile under their influence were simply postponed to all return at once, and whatever faux energy provided by the steroids were merely borrowed from future reserves, which demand repayment as soon as the steroids are down to a level where they can no longer resist the body’s energy bill collector. Then, you feel RETCH-ED. Though, there is no way around it; it must simply be endured. Hemosapien e-mailed me and said that a lab in Nashville that they also use is able to do the flow cytometry on my labs. The normal lab that they use is not in my PPO network. He said if I could check within the next hour or so, he could send them to the slides to the lab in Nashville if I could confirm to him that Nashville was in my network. Thee I am hooked up to chemo tubes: How could I determine that in the next hour or so? By the magic of the Blackberry I was holding in my hand. I googled “PPOPlus +US Labs” and the search immediately turned up “US Labs, Brentwood, Tennessee” as a participant in my network. I was able to e-mail Hemosapien back in just a few minutes and tell him to send those slides to Nashville! He was being very helpful to me. Not only that, I was copied on e-mails between Hemosapien and Nurse Susan at BATCC. The summation of their exchanges went like this: Both Hemosapien and Gooday really wanted the actual sides of my bone marrow, but BATCC was willing to receive the REPORTS of the lab work only in order to save me some money, since both Hemosapien’s lab and BATCC’s lab would have to charge their fees for this lab work and pathologists interpretation. There was no need for me to have to pay for this twice. Hemosapien could just send BATCC the report of the lab work he had done. I am truly thankful for this effort made on my behalf by people who took time out of their busy schedules to assist me in this manner. To all my health care providers who have always done things behind the scenes for my benefit, many of which I am aware, and I’m certain many that I don’t even have a clue about, here is a great big ol’, unmitigated, unabashed, gushing “Thank you!” I am humbled by your service, your levels of professionalism, your care, and your patience with me which continues in spite of me being so persistently demanding, and occasionally downright obstreperous. It’s off today for Round-4 Day-2. It’s more of that delicious cyclophosphamide and fludarabine. The cyclophosphamide leaves a taste in your mouth like you just licked a rusty old iron skillet. The fludarabine seems innocuous enough, but without the Kytrill (anti-nausea medicine) they tell me I would like both of them even less. Funny though, the chemotherapy is not about what I like, the chemotherapy is about what the cancer DOESN’T like; and the cancer DOESN’T like rituximab, cyclophosphamide and fludarabine. What I like is irrelevant, unless my likes are confined to the focus and welcome reception of the things that the cancer doesn’t like, despite the side-effects. I think I’ll just shut-up now, and take what’s coming to me; a particularly rare and newsworthy occurrence. Someone should alert the media. 11/3/09 The Cat Will Be Skint!! Today I went for my Chemotherapy Mid-Course Bone Marrow Biopsy. My friend Gene went with me. I was not looking forward to it, but it must be done. Hemosapien and I discussed this prior to starting. I asked him, in his estimate, what the results would say when they came back. He was guarded in is comments. “You’ve studied this and you know the numbers,” he said, “But the biopsy will reveal what it will reveal.” I nodded my head and threw numbers back at him. “On the first chemotherapy, about 90% of the people respond. We know that I am in the 90% because of my blood counts have shown a dramatic improvement.” “That’s right,” he said. “About 60% of the first timers have a complete response the first time, which means there is no measurable residual disease left in their body,” I said, spouting off numbers like we were TWO doctors discussing a patient that was not me. “If I were to be completely responsive, that does not mean that there is no disease left in my body,” I continued, “just that it is reduced to the point that in a sample, given the sensitivity of the measuring tools we have available to us, it simply cannot be detected. That’s a far cry from not having the disease, but far better than having it in measurable strength.” “Yep!” He said, me doing all the talking and he preferring to wait for the biopsy results. I was not ready to shut up yet, perhaps wanting to put the biopsy off as long as possible, and continued with a question. “So if I am completely responsive, what does that give me?” “You know those numbers, too,” he said. “Given the fact that I am unmutated IgVH and Zap-70 positive, if I am lucky, I’ll be disease free for a couple of years, building up to needing re-treatment in 4 to 5 years,” I said. “Yep!” he said, making me think that he was really from New England and not South Mississippi. “Can you tell me how to get to the highway?” I asked the Vermont dairy farmer. “Yep,” he said, offering nothing else. “Well then, will you tell me?” “Yep,” he said gazing off in the distance. “Well, how, pray tell, do I get there?” I asked in exasperation. "From here?" he asked. "Yes, please, from here!" “Turn right by where the old milk plant used to be,” he said, pointing East, grudgingly, like those eleven words were a very expensive waste on one with an accent like mine, he saying no more, and me wondering just how I was going to determine where the old milk plant used to be. Hemosapien decided that he needed to spend a few words, but he was not going to tell me anything I didn’t already know until he was sure what the biopsy said. “When all these studies were done, we didn’t know about ZAP-70 and IgVH mutations and their significance to disease progression, and the lack of those significant variables make the numbers somewhat unreliable,” he said, adding, ”But don’t be disheartened if this three-month, mid-course biopsy doesn’t show you being completely responsive. That’s what we hope to achieve with the last three treatments.” I then showed him a copy of my bill, and the detailed invoice I had already gotten the nice ladies at the front office to print out for me. I pointed to the procedure codes on the bill, telling him that I needed some sort of reference to determine what these meant, so that I could look at what they charged for each procedure, how much my insurance paid them for each procedure, what the PPO discount was for each procedure, thus learning my NET cost for each procedure. I think he thought that I was trying to determine what their cost and margin of profit was. He was reluctant to offer me any help. “The ladies at the front office do not want to give me this information,” I said. “Neither do I,” replied Hemosapien. “But it would be so easy for you to help me. They work for you, you go up there and tell them, ‘get him the procedure code schedule’ and they, working for you will do it, it’s just that simple.” “Perhaps you should Google and see if you can find this information on your own.” “I am a businessman, a capitalist, and respect the fact that you HAVE to have a margin of profit on your sales, or you cannot pay the rent, yourselves, all these nice nurses, phlebotomists and lab technicians, all your significant malpractice insurance premiums, and your insurance and business office people. I understand that. What I am trying to determine is what all this is actually costing ME. What it costs YOU is irrelevant to me. What you charge me for it, though, is relevant, and I have the right for that information in some manner other than unspecified charges and credits, or charges and credits referenced to some code that I do not know what it is.” “I don’t want to be involved in this. I have other duties which are far more important to me, such as your health care. The business end is not what I focus on. We have other people who work here who do that” Persisting I said, “And they work for you. One word from you and they will get me that information.” He reluctantly agreed to look in on that, but encouraged me to acquire this code information on my own. We then got on to the business at hand with the biopsy. N He then got to work, sterilizing the area of my hip from which he was to take his bone marrow core. Gene later commented that he did all of this with great precision. One of the tools he uses, the large one Hemosapien is pointing to in the picture, is called a “gemshidi.” This is pronounced “jim-shiddy.” What a perfect name. I told Hemosapien just to think what fun I was going to have on my blog with that name. “Jim-Shitty! Jim-Shitty!” I said, adding, “’Shitty’ certainly is the right word.” “A shitty instrument for shitty treatment at the hands of “It’s payback time for some of the things you have written about me,” Hemosapien said with a twisted sort of grin, one I had never seen before. I was starting to sweat bullets, thinking of every time I had inserted words into his mouth on my blog, words which sometimes were mine and not actually his, me having already explained to you readers that this is MY blog, and the truth is in here somewhere, but sometimes occluded by my jaded and cynical perception. Oh how I worried about that now! He could certainly make this more painful than it had to be, and it had to be painful, even excruciating, but it did not have to be tortuous. He could certainly shrug his shoulders and make it so. Those sweat bullets were getting bigger. Perhaps I had taken the valium too soon and it was wearing off.
‘You’re kidding!” I said. “Nope. All finished,” he replied. “I simply cannot believe that you are leveling with me. There’s got to be more!” “Nope! All done!” Was it the valium I took? I don’t think so, though it didn’t hurt. “In the year it’s been since I had my first biopsy, you’ve had much more practice doing these,” I said to Hemosapien. “Your technique has improved considerably. There is absolutely no comparison between this one and the first one.” “Well we do them all the time,” he said. “By the next time I need one, you’ll be so good at it, you’ll be able to do it via e-mail or mobile upload,” I said, him laughing at the suggestion. “I salute you. My hip salutes you. Future patients will stand and salute you,” I foresaw. He just laughed and started putting things away, adding, “You rear is going to be pretty sore, though. You might want to be careful how you sit down.” And he is right. It’s as sore as a thumbnail torn to the quick, with a blow from a dead-hammer thrown in for good measure, but compared to the previous biopsy . . . .? I had already told myself the old women and children get these and endure it. Why should I make a big deal of it? Why should I whine about it? It was a thing that was required, and a thing to be endured, so shut up and get on with it. Manly was the word that came to mind. Perhaps that was why it seemed less painful. Perhaps it was the 20mg Valium. Perhaps it was because my buddy Gene was there with me. Perhaps it was Hemosapien’s more practiced and experienced technique. Maybe the first one was a fluke. Maybe this one was an aberration. Maybe the next one will be blindingly painful. Maybe the leukemia will kill me before I have to have another one. Maybe a complication of the leukemia will kill me before I have to have another one. Maybe I’ll get H1N1. Maybe the sky is falling. Maybe all of these things. Maybe none of these things. “Do you mind if I take your photo to put on my blog?” I asked Hemosapien. “No,” he said, ”I won’t mind.” "I’ll bring my real camera for that instead of this cell phone. Come see me tomorrow while I’m getting my Rituxan. You know I’ll be there all day,” I said. “OK!” he said back, with the nicest smile. He then handed me the standard procedure sheet which I was to turn in to the ladies at the front desk, so they could do their billing and schedule the appointment for the chemo the next day. I looked at it. I looked at it again. I began to study it carefully. There, on one sheet of paper, in my hand, were all the procedures and procedure codes used by Hemosapien’s clinic. This is exactly what I had asked for, which everyone seemed reluctant to provide to me. Hemosapien had told me to try to find this information on my own, and on my own I found it, just by being observant to the piece of paper that was in my hand. They had handed me one of these dozens of times before, but I never really needed the information on them until now. Everyone there at that clinic is helpful. They do their very best to accommodate the patients there, and represent a real value in quality health care as far as I have been able to determine. Meridian, Mississippi, is extremely fortunate to have Hemosapien, his colleagues, and the facilities they use to practice their medicine. They save lives every day. Of course, eventually all of us patients DIE, but it’s their job to see that we don’t die from our CANCER. That is not always possible, because it is OUR cancer, not THEIRS. It is our bodies run amok; they just do their best-to-their-human-capability job to help us. Sometimes they win; sometimes they lose, and their losses do not leave them unaffected, since physicians are not islands entire of themselves, but pieces of the continent, parts of them, main. They know that the bell tolls for them. <See John Donne, previously cited> Since everyone there is so helpful, I asked the first nice, helpful person coming down the hall if there was a copier nearby. The answer was yes. “Can you make a copy of this for me?” I asked. “Sure!” Now in my hand were two copies of the information I needed. I turned in the original to the lady at the front desk who will use it for the intended purpose at their facility. I folded the copy and stuck it in my pocket. Hemosapien had provided the information I needed after all. There is more than one way to skin a cat, and rest assured, when persistence and determination are met with spits, claws, and even fangs, the cat will be skint!!! If not one way, then certainly another. “Could you not clearly see that the cat was fore-ordained to be skinned?” chuckled Calvin, springing up out of nowhere as Gene was driving us back to my house. “Shut up and go away,” I said to him. “Were you talking to me?” Gene asked incredulously. “No! Sorry, Gene. I was just thinking of what I needed to tell a worrisome old friend.” 11/1/09 We Win, We Lose; Thankful Either Way Last weekend, I had the best time. Raymond Huffmaster and I have been trying to capture the remarkable musicianship of our friend Avil Linton. Avil is a stellar musician who has been a tremendous influence on so many other musicians, some of them Grammy winners, that we felt it was urgent to capture him on audio and video while we had the means to do so, Avil, himself being the most important variable in that equation. I’ve got my recording studio and some video cameras, and all the accoutrements that go along with it, but it would be hard to capture Avil without Avil. He is a humble man, and we were hard pressed to get him to go along with doing this, but he reluctantly agreed. We called in his friend and ours, Larry Perkins to come down from Nashville and help. While we did not produce anything that is like a record to be released, we did manage to capture the essence of Avil. I am going to post some of the videos on YouTube shortly, and will keep you readers posted so you can see this remarkable man. He’ll read this and call me and tell me that I should not have written such things about him, that he was rusty, that he can’t play anymore, that all this fuss would not have been made over him. I know the phone will ring as soon as his wife Judy shows this to him, she being the computer person, and Avil just looking at things she finds for him. He and Raymond encouraged me when I was a young player, taught me so much, and indulged me when I only knew a couple of songs to play, which I would break out into like Elvis in one of his movies the minute the action seemed to lag. They must have listened to “My Walking Shoes Don’t Fit Me Anymore” until they were absolutely sick of it. They would smile when I’d sing it, and play right along, so I thought they liked to hear me do it; but I’m certain they didn’t like to hear it 25 times in a single evening’s worth of picking. Those were forced smiles, but they were encouraging. I am forever grateful for them. So many people have an impact on our lives; we have them for a while, then we lose them, but my, oh my, we are thankful for having had them. Sometime during the course of last Sunday evening, we had about run out of steam. Avil had developed blisters on his fingertips (we worked him pretty hard!) and was just about done. We were beginning t think about something to eat, and just visiting for a while, when Raymond asked me to play Jimmie Rodgers “Free From the Chain Gang Now.” This is a song that Jimmie recorded late in his career. It was written by a Tin-Pan Alley songwriting duo named Herscher and Klein. Herscher and Klein no doubt kept Kosher, as we were unable to do as we somewhat later sat down to some country style ribs that I had cooked on my remarkable grill earlier I got lots of compliments on them. Raymond brought the ribs and I cooled them!) I hope Herscher and Klein did not mind us eating pork so soon after having their song issue from my gentile mouth. I suppose they didn’t mind, since we all agreed that Herscher and Klein had written perhaps and arguably, the best country music song ever written. Jimmie recorded this song late in his career, when he was already selling millions of records. I suppose, like today, the artist selling millions of records gets first shot at all the good songs. I’m glad Ol’ Jimmie got a shot at this one and decided to sing it. It is, without fail, one of my favorite songs. Thanks, Mr. Herscher. Thank, Mr. Klein. Shalom Aleichem to you! And thank you, Jimmie. You illness and looming departure from this earth gave poignancy to this song I do not hear in any of your other songs. “Jimmie,” I asked to the spectre appearing in front of me, perhaps a leftover from the days I wrote about earlier, “What led you to do this song?” “Well, Ol’ Pal, I was reaching the end of the line from that ol’ TB when one of those New York people brought this song to me. It ain’t about dying, but it sure is about livin’, so I decided to record it. It never sold like my “Blue Yodel” songs, but it did all right. After I passed on, it provided some royalties to my family,” he said. “Were you ever on a chain gang?” I asked. “Naw, never on a chain gang, but I was in jail a time or two.” he said. “I had some rough and rowdy ways about me, but that ol’ TB took the starch right out of my sails. I wound up having to move to Texas so I could breathe. They said that dry air would help me, but I was beyond help, I think.” “Seems so,” I said. “Well I hate the fact that you had to move to Texas. They lay some sort of faux claim to you, and actually like to brag that you are from there. You know how Texans like to brag” “Boy, do I!” he said. “But they were nice to me, those Texans; a gracious bunch they are when you get to know them. And they sure can make a mean brisket!” “Amen!” I said. “So you went to Texas for medical reasons?” I asked. “Yes, but they couldn’t help me there.” “You know, I go to the Big As Texas Cancer Center in Houston for treatment of my disease. It’s like TB in the way that it slowly chokes the life out of you. In that way, we have much in common; Texas medicine and slow-death diseases.” “That’s what I heard,” he said. “How could you have possibly have heard about me?” I asked. “My sister-in-law, Elsie McWilliams, and my first cousin, Hortense Harvey, told me all about you. We have them in common, too, you know.” I was shocked that Jimmie Rodgers knew anything about me. “They said that they tried and tried to get you to play some of my songs, but you never would, and they were terribly disappointed about that; but now, you’ve come around and we’re all pleased about that up here. You need to work on your yodel, though. It’s a little weak, I think!” “Boy, I’ll say. There’s no way I could ever yodel like you, but I do the best I can. A yodel can go as bad as potato salad left out on a July picnic table if you don’t watch it.” “I’ve had a few go bad, too, in my day.” He said, “But they’re all right on the mark now. Never miss one!” “I bet not,” I said, adding, “I sure enjoyed this conversation.” “We’ll get to have more conversations soon enough.”
"Why, no. Ed was a fine entertainer. He was very fond of my music. He told me about the time that you and he spent a rainy Saturday and listened to every single one of the songs I recorded. Ed has since heard a few that I never was able to get recorded. Elsie and I have been working on some new material, and I like the way Ed is puttin' that ol' dobro in there!" "I'll bet he's enjoying himself!" I said. "Say, that's a fancy camera there." He said. "Nikon D90." I replied, "I just set it up and push this remote control button here in my right hand, and we'll have us a nice photo." "Do tell? What will they think of next?" He answered, quizzically. I took the photo and could see that it was time for him to go. "Say hello to Miss Elsie and Miss Harvey for me, and Ed, too, if you don't mind!” “Will do,” he said, and added as he de-materialized right in front of my eyes. “Heh-heh! Hang in there Ol’ Podner, and keep on singing my songs. They were good ones, you know.” They were good ones. They were good ones. I kept thinking after he was gone. Dang right, they were good ones. He still influences people today. I’m not the only one. Free From the Chain Gang Now? Here’s the lyrics. I got rid of the shackles that bound me And the guards who were always around me Like a bird in the trees I have won my liberty And I’m free from the chain gang now
Long ago I was known and respected Then one day I was falsely suspected They put me in chains working out in the rain But I’m free from the chain gang now.
(Then the Yodel!!!!)
My mother’s poor heart was broken ‘Cause she knew that an untruth was spoken There were tears on the mail that she sent me in jail But I’m free from the chain gang now
And all the years that I spent with a number Were just years that I spent without slumber After long years of shame I have won back my name And I’m free from the chain gang now.
(More yodel)
Now I’m going back home to another She’s my sweetheart who’s waiting with mother And I’ll dry all the tears they’ve been shedding for years ‘Cause I’m free from the chain gang now.
(Last yodel and out!) I sang this song with Raymond, Avil, Larry and Lyle, had the second yodel go bad but recovered after spitting it out like some of that bad potato salad. They all liked it. I warned them before I started that the studio room was a little small for the yodel, and that there was no half-way to yodel; it is an all-or-nothing venture, like a bet placed on a hard number on a craps table; you either win or lose . . . no partial victory. “Let ‘er fly,” said Larry. So I let ‘er fly! When I was done Avil said, “I’d tell you that I liked that, but I’m afraid that you’d think I meant it.” Always picking, asking, “What happened on that second yodel?” “She turned bad on me about as quick as a horse that threw a shoe off a sore foot.” “That can happen!” he said softly, letting me off the hook, apparently in reflection of a few musical ventures having gone bad on him, too. “Free From the Chain Gang Now” is a song that is at once sad and happy. It simultaneously bemoans loss and celebrates recovery. It is joyful and mournful at the same time. What an achievement for Herscher and Klein as songwriters. Did they craft this song out of their own cleverness, or did it download itself to them from the ether, as Bob Dylan declared on how he gets many of his songs? I know that it is true; that you can tune your personal receiver to a frequency that has the song playing on it. You can labor for hours turning that imaginary dial, then suddenly, there is a song just waiting to be written down. I’m always writing stuff that leaves the new CLL_BLOG reader wondering, “What in the world does hat have to do with him and leukemia?” If you’ve been a reader for a while, you know my standard answer. Everything. You get cancer, you mourn what you lost, then, if you are going to have a meaningful life thereafter, you cannot continue in mourning, you must move on to being thankful for what it is that you HAVE. Jimmie Rodgers mourned for the time he lost in “Free From the Chain Gang,” but he was thankful for what he had left, without being bitter about his loss, moving on towards the two wonderful women he had waiting for him, his sweetheart and his mother. I will posting the Bad Yodel Number 1 version I sang last Sunday right here in a couple of days. I forgot to bring the file with me. You can listen to it, flaws and all. That’s how others see our lives, anyway, flaws and all. I laugh at myself. I may as well, when you hear the song, you'll hear everyone laugh at it. I am also posting Jimmie Rodgers’ original here. It belongs to a publisher that I hope will not mind if I use it here for short time. They may make me take it down. If they do, that’s OK. I am borrowing it for just a little while. Maybe you can hear the pain, loss, and redemption that Jimmie communicated in this song, while he was speeding to his own death from Tuberculosis. Maybe it will make you want to rush out and buy a Jimmie Rodgers CD, thus rewarding the publisher for my having put the song on here. It can't hurt. You can watch and hear me and the Jang-A-Lang band do it in three-part harmony, no bad yodel , below.
Tomorrow, I am off to Hemosapien for that bone marrow biopsy. Debbie says she forbids me to carry my pistol. Then Wednesday, Thursday and Friday will see me with “Them Ol’ Chemo Blues!” Gene Bush is coming down from Nashville to spend the week with me and carry me to my chemo treatments. You see??? You see how fortunate I am?? I’ve got a friend who will come all the way to Porterville from Nashville to be with me for a week and carry me to my treatments. Think about that for a while. I sure am thankful. Thankful for old friends, new friends, old friends I re-discovered on FaceBook (What a wonderful medium!), family, family I re-discovered on FaceBook, and thankful for the Book of Job. I keep re-reading it. It is stuck on me like a fly-trap dropped from a rotten string in the barn, curled all about my hair (which I still have and am thankful for). Job is worthy of a lifetime of study. One could never understand all of it’s lessons, but one can sure grow up while trying! 10/21/09 Happy Anniversary (No kidding!) As a cancer patient, I am now one year old; a significant milestone many persons with cancer never reach. I am thankful for the miracle of modern medicine. “The world is mine, thanks to the miracle of modern medicine,” said Alexander the Great, after taking the medicine his physician gave him right before his mysterious, youthful death. “I came; I saw; I conquered through the miracle of modern medicine,” said the epileptic Julius Caesar early on the morning of March 15, 44 B.C.
“Let them eat cake and have the miracle of modern medicine” said Marie Antoinette, thinking her surgeon could re-attach her head.
I’m feeling better, thanks to the miracle of modern medicine Mozart (shortly before being buried in an unmarked pauper's grave)
“Able was I ere I saw the miracle of modern medicine,” said Napoleon, poisoned by his British keepers on St. Helena. “War is Hell without the miracle of modern medicine,” said U.S. Grant, or W.T. Sherman, depending on the historian. “Go west young miracle of modern medicine,” said Horace Greeley to an impecunious and recently graduated medical student. “My cough is better, thanks to the miracle of modern medicine,” said Doc Holladay to Wyatt Earp right after a big gunfight. “The miracle of modern medicine is dead,” said Frederick Nietzsche in an empty lecture hall. "They can put my ear back on, thanks to the miracle of modern medicine," said Vincent Van Gogh. “We have nothing to fear but the miracle of modern medicine.” said Franklin D. Roosevelt during his inaugural address. “I shall return through the miracle of modern medicine,” said Douglas MacArthur, escaping Corregidor by boarding a submarine bound for Austrailia. “You’re fired,” said Harry S. Truman to Douglas MacArthur, adding, “What the hell has any damn miracle of modern medicine got to do with it?” “Never before in the field of human conflict has so much been owed by so many to the miracle of modern medicine,” said Winston S. Churchill during the big WW2. “Ask not what the miracle of modern medicine can do for you, ask what you can do for the miracle of modern medicine,” said John Fitzgerald Kennedy during his inaugural speech. "One small step for man; one giant leap for the miracle of modern medicine!" said Neil Armstrong as he planted his foot on the moon. “We made baseball history, thanks to the miracle of modern medicine,” said Mark McGuire, Sammy Sosa, and Barry Bonds, just recently. “We were able to keep up our hectic celebrity lifestyles, thanks to the miracle of modern medicine,” said Elvis, Jimi, Janis, Jim, Keith, Gram and Michael, at a recent meeting of the Famous Young Deceased Persons Luncheon in Valhalla. “I reached market weight almost two months sooner than my grandparents, thanks to the miracle of modern medicine” one hog was recently overheard bragging to another on the slaughter house unloading ramp. “Free sugar cubes of the miracle of modern medicine,” said Jonas Salk, with Franklin D. Roosevelt and my Uncle Joe thinking he was perhaps a little late. “You can continue to enjoy smoking and good health, thanks to the miracle of modern medicine,” said a recent, but unpublished study conducted by the New Re-Aligned Tobacco Growers and Marketers Association. I am a big Jack Benny fan and recently ran across a six DVD set of the old Jack Benny Show. I marveled at the cigarette commercials the producers very wisely left intact on the shows, particularly, the one that showed that doctors as a group were far more likely to smoke Lucky Strikes than other brands; one commercial even having a man identifying himself as a physician, saying, while puffing in the most delighted manner on his Lucky, that since doctors preferred them, they were obviously the more healthy brand. Lucky doctor; He smoked Luckys. If we wanted to be successful, healthful professional type persons, we should smoke Luckys, too. I had a friend who had a foul natured, foul smelling, flea-bitten dog with one eye, three legs, a bad case of mange, and a tick lodged so far down in his ear that it was interfering with his sense of balance so bad that he had to walk in wide arcs, always turning to the left like a NASCAR driver. I asked him the dog’s name. “That’s old Lucky,” he said. “Lucky?” I inquired with raised eyebrows, “What an ironic name for such an obviously unlucky dog.” “Well, he’s certainly lucky to still be with us,” my friend said. Nonplussed, I had no answer; a rare occurrence. One year is a milestone, for sure. The statistics indicate that the median survival of persons with my particular brand of CLL is seven years after diagnosis. That leaves me six if I’m the median, or more, or less if not. “We’re working furiously to come up with a cure for this disease and are hot on its trail,” said Gooday. Like Franklin D. Roosevelt and my Uncle Joe, I’d rather them come up with that sugar cube sooner than later. “Well, do you think it might be as early as next week? I asked Gooday. “No, I think it would be rather over-optimistic to hope for this as early as next week,” he said. “Well, perhaps, then, before my annual insurance limit is reached?” me with another question. “You’ll have to give us a little more time than that!” “Well, for goodness sake, hurry up! I'm depending on y'all and the miracle of modern medicine” "Modern medicine certainly is miraculous," said Gooday. "That's what King George III's physicians said as they were BLEEDING him nearly to death every day trying to cure his mental illness," I replied. "But these are modern times," said Hemosapien, "We know so much more now." "And those weren't modern times? There's so much more to be WRONG about now. Used to, a doctor could simply be wrong and bury their patient. Now they have to be wrong ABOUT something before burying the patient," I, jaded and cynical, reply. "You should take a valium and get some rest. You're a walking demonstration of sleep-deficit," said Hemosapien to me, and I finally realized I was having a conversation with them in a dream; or was I dreaming that I was dreaming?. "I don't have any valium!" I said, then drifted back to a fretful sleep, which is how sleep has been coming these days. I seem to go for several days on two hours sleep, then suddenly, I’ll sleep for seven hours. Hemosapien and I talked about this, and I asked him to talk with Mainmost. I don’t know if he has done so, but we have come up with a workable plan, Hemosapien and I. One of the important things for a physician to know about sleep is this: Do you have trouble GOING to sleep, or STAYING asleep? I can GO to sleep immediately. I can’t seem to STAY there. I know it’s my restless legs syndrome (RLS) causing it, because I JERK wide awake, suddenly. Once I wake up, that’s it. I’m up! I’m also certain that the chemotherapy has exacerbated this situation. We added one additional medicine to the medications I am already taking for RLS, and this seems to be helping. The RLS medication line-up now:
This combination seems to do the trick, SOMETIMES! I must take the Mirapex Before 6:00PM or NOTHING seems to work. I take the others right before I am ready to go to bed. They put me out like a tripped circuit breaker that has seen a direct to ground bolted fault. I still go along and have a night or two with two hours sleep, but mostly am sleeping 4 to 6 per night, occasionally seven. Once, recently, I slept for an entire nine hours. I had not done this in years. I have also learned this since I have been taking the Lortab/Mirapex combination for about six years now: You cannot leave your Lortabs out where they can be seen by visitors to your house; they will disappear. I have several friends who seem to have picked up a nasty addiction to opiates. Three of them are on Methadone maintenance, and I think a couple of others need to be. I now keep them locked in my gun safe!! It’s hard to get in there. I keep three of four in my Mirapex bottle and when I need more, I add them. They no longer seem to disappear. Some of my friends no longer come over as much. When I was (much) younger, I suppose I fooled around with recreational drugs as much as any young experimenter:
“I wish you’d get back to work and quit fooling around with those mushrooms,” my granddaddy would say. “What do you do with those things?” “They’re good to eat,” I’d say, “but I don’t think you’d like them, Granddaddy!” “I wouldn’t like eating anything with cow shit on it,” he’d say back, shaking his head as he got into his truck to drive off, leaving me to work the cows and pick my mushrooms. That’s enough said about that. I sure did like them at the time, though. I think they made me see things differently in life in general. They are behind me now, having worked their magic, whether it was good or bad. If I knew then what I know now, I would not have experimented with them, but I was less wise then, and only slightly more wise now; and just about this, nothing else. I have had the unfortunate opportunity to witness several of my friends trade their homes, wives, careers, bank accounts, and sometimes their liberty to support their addiction to prescription pain-killers. I have been very cognizant of that since I have taken one myself for several years. Mainmost told me that I was not a candidate for addiction, since I had shown no signs of it during the several years he has had me on the codeine. “If you continue to treat it as the medicine it is, and not abuse it, you will not develop an addiction,” he said. I just want the medicine to help stop the symptoms of my RLS. There is nothing in my life I want to escape from. I am working on embracing things, not escaping from them. I like my wits about me, and hate the thought of leaving them defiled on some altar to chemicals which rob and steal. I am so thankful for that. I also mourn for my friends who are chained to this altar. They have made a bad bargain. I wish I knew how to help them and mourn my inability to do so. It seems there is much to mourn amid the much to be thankful for. That’s the way life is. We mourn our losses; we celebrate our victories; we keep moving towards more mourning and celebration. I think I’ll celebrate victory now, and leave the mourning behind me, having already had my share for the day, and a good night’s sleep last night, as I sit here, looking at the sugar cube I am preparing to drop into my cup of coffee, celebrating the medicine I know will be in it one day, and refusing to mourn the fact that there is no medicine in it now, just a sweetness that makes this cup of coffee delightful. Oops! I had filled the cup too full. The sugar cube made my cup overflow! How about that!! A special thanks to Hemosapien for more than one special favor!!! As Ed Dye would have said of him had he known him, “He’s a good boy!” I wish Ed could have had Hemopsapien treating him instead of the VA which I think neglected him to the point of killing him, telling him that the pain in his back was just because of arthritis; and that, just a month before they finally discovered that cancer had invaded his lungs and spine, nearly destroying two of his thoracic vertebrae. He passed away from his cancer within a month of their discovery that his pain was not caused by arthritis. Hemosapien, Mainmost and Gooday would have seen this right away. Dr. Assinineiranian-prahbupthi Mustafamediocreislandmedschoolmiscreant at the VA? He just told Ed to take some Tylenol to relieve the pain. I’d like to turn Hemosapien, Gooday and Mainmost loose on those crappy VA doctors with a fresh batch of hickory sticks; not too big, but just big enough so that they won’t break with a good swat. I had a wonderful weekend. Great friends, great food, great music, delightful weather, grandbabies, etc!!! 10/10/09 Oh, Retch-ed Day! Certainly you don’t think I don’t know how to spell W-R-E-T-C-H-E-D. I spelled it the way I needed to. The reader will make his own extrapolations as to why I spelled it this way. Hemosapien? God bless him! On Tuesday, right before I started my first day of round three of the chemo, before the start of the long day of Rituximab infusion, and after reading my blog, he motioned for me to follow him. Down a second hall, and in a little offset cubicle, and in a clandestine, conspiratorial manner, he pointed to a coffee pot. “This is the employee coffee pot!” he said with a big grin. “Help yourself anytime you want some!” I was scheduled to return to BATCC in November, between chemo round 3 and 4 for a bone marrow biopsy and labs. I was now becoming fearful of the expense of this. After communicating with Nurse Susan at BATCC and inquiring about the possibilities of having the biopsy done in Meridian rather than Houston, she said that it was possible, but she would have to check with Gooday. I copied Hemosapien on the e-mail. He responded, “It looks like the final decision on the biopsy rests with Gooday.” I responded back, somewhat arrogantly, “It could very well be that the final decision on the biopsy rests with me!” The truth of the matter is this. If Gooday had said it was necessary, I would have gone back to Houston. They graciously have agreed to let me have ALL the chemo in Meridian, as well as the necessary biopsies and labs. I will return to Houston eight weeks after the complete chemo course is over for labs and follow-up. Nurse Susan e-mailed Hemosapien as follows: Hi Dr. Hemosapien: Mr. Sharp can have his bone marrow done with you instead of the expense of coming to Houston to BATCC. Please do a bone marrow at least 28 days after cycle 3 and before cycle 4. Use your discretion if his ANC is too low wait for recover, so we get a good sample. It can be longer than 28 days just not shorter. Please do a bone marrow aspiration and biopsy with limited flow cytometry (CD5/CD19, kappa, lambda). Once the sample is complete please sent a report and slides to our office, so we can have it read and obtain the data. Thank you for helping with our research and our mutual patient. I am thankful that so many people are watching out for me; doing their best to serve me and see that I get the things I really need. Sometimes in the pursuit of this blog, I am unappreciative, petty, and belligerent, but their efforts on my behalf are not unnoticed, and are sincerely appreciated. The feral hogs that are interloping on our property are like an unwanted virus in our bodies; they damage things you don’t want damaged, they destroy things you don’t want destroyed, they run off wildlife that is there by natural right and compete with them for food, they cost you money you don’t want to spend. Here, they only have one natural control on their existence: Me and my cousin Dennis. Our own bodies have mechanisms to ward off viral and bacterial infections, or control them if they invade. My body’s B cells are mostly not working right. They are genetically defective little cells called lymphocytes. They cannot do their job properly. Viral and bacterial infections represent a hazard for me since their natural enemies in my body are compromised by cancer and it’s treatment. One could get me! I am the B-cell type hunter of the feral hog virus. I am the NK (Natural Killer) cell. I am a part of their natural environment! (How could I not be? They are here and I am here!) I am the thing they have to worry about. If they encounter me, it is not good for them; I will take them out.
I did my job. The hog presented itself, and ol’ NK me just took it right on out of this life. The deer that it ran out of the field did not seem to mind, but seemed rather relieved the next day when I counted fifteen of them in the field. Some will abhor my behavior, this wanton killing of an animal. I would remind them of our stereo vision and canine teeth; that humans are predators part of other animal's natural environment. If you think I am wrong, that's OK; we can still be friends. I am unapologetic. Pick your battles; you can't win this one. The hog, a sow about 65 pounds, was dispatched with one excellently placed shot, which was set on a precision ballistic course of my choosing, and struck in exactly the intended place, from about 150 yards out. The hog never had a chance upon its encounter with me. It has already been turned into barbecue by my friend Thomas, providing sustenance for him and his family. Just an hour earlier than the hog was delivered, Thomas had told my cousin, Dennis, that he sure would like a wild hog to barbecue. Dennis helped me load up the hog and we took it to Thomas, incredulous at how quick he got his wish, and he said, “Boy, y’all don’t fool around, do you?” Nope, when I am in NK mode, I don’t fool around. I hope my own NK cells are as diligent. Yours, too! 10/8/09 We're All Just Passing Through We're all just here for a little while. We're all just passing through. That's what I wrote the song about that appears below. We have so much in common with each other. We are all human. We all have hopes and dreams. We all have aspirations. We have victories. We all stumble. We all fail. We all waste precious time and energy worrying about things which are insignificant in the long run, and fail to do the things that REALLY matter in the eternal scheme. Does that make us wicked? (That is rhetorical: Don't answer!) It certainly makes us human; rapidly, and directly proceeding to the same earthly fate common to all humanity. Perhaps today is a day when, within the reach of our arm, we can extend our influence to touch someone else's life in a way that makes their journey more pleasant; their load less heavy. It could be just a kind word, or a smile.
"All mankind is of one author, and is one volume; when one man dies, one chapter is not torn out of the book, but translated into a better language; and every chapter must be so translated...As therefore the bell that rings to a sermon, calls not upon the preacher only, but upon the congregation to come: so this bell calls us all: but how much more me, who am brought so near the door by this sickness....No man is an island, entire of itself...any man's death diminishes me, because I am involved in mankind; and therefore never send to know for whom the bell tolls; it tolls for thee." JOHN DONNE Donne said it very well.
John Bradford, English Reformer John said that watching a group of prisoners go to their execution at the tower of London shortly before his own execution there. It is later modified to, "There but for the grace of God go I," and frequently, but erroneously attributed to St. Paul as a quotation from the Bible. It is right up there with the old bible quotation, "Cleanliness is next to Godliness," which is Poor Richard's Almanac (Ben Franklin) rather than the Bible. John knew that everyone else's existence and fate was just like his own. In his poignant remark, there is no hint of haughtiness as is so common when this remark is heard coming from the lips of others.
St. Paul, in reply (Some Chris-fabricated words being placed very carefully, fearfully, and with the greatest respect in his mouth): "I did not say that. I was perhaps the first and foremost proponent of God's grace in the Christian era, and while I agree completely with this statement, it cannot be rightfully attributed to me. I did say this, though,"For though I would desire to glory, I shall not be a fool; for I will say the truth: but now I forbear, lest any man should think of me above that which he seeth me to be, or that he heareth of me. And lest I should be exalted above measure through the abundance of the revelations, there was given to me a thorn in the flesh, the messenger of Satan to buffet me, lest I should be exalted above measure. For this thing I besought the Lord thrice, that it might depart from me. And He said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ's sake: for when I am weak, then am I strong." II Corinthians 12:6-10 One might say, "We're All Just Passing Through!" That's the name of this song below. I wrote it a long time before I had any idea about having Leukemia but after I had started, somewhere along the road to maturity, to realize that my lot and condition in the human experience was similar to everyone else's. I was special without being special; an anachronism that is inescapable in contemplation. This recording of the song was done just one month after they told me I had Leukemia. I was overwhelmed with the sense that I must perform this song. It had become far more personal to me than it was when I originally wrote it. I hope you like it. It was written for you. For some it will contain despair. I see in it the hope that is common in all mankind.
10/6/09 Able Was I Ere I Saw the Poorhouse I borrowed the title from Napoleon Bonaparte. I hope he doesn’t mind. Why should he? I gave him proper credit and he is, shall we say, currently (and permanently) retired. He had his poorhouse, too. In fact, he had two of them. “Able was I ere I saw Elba,” he said. Elba, his first place of exile, an island in the Mediterranean just off the coast of the French Riviera must have seemed splendorous compared to his final and ultimate place of exile, the island of St. Helena, cold and damp in the Eastern Atlantic hundreds of miles off the West coast of Africa. If you are not familiar with that famous Napoleon quote, look at it again. Look at it even further. Move your face closer to the screen, and REALLY look at it. Read it carefully, then, read it backwards. Isn’t that clever? Though this famously clever quotation is attributed to Napoleon, I have my doubts. More than likely, what he really said was, “Able was I ere I thought that Russia was ripe for invasion!” He then probably said, “Able was I ere I failed to learn contentment!” From Longwood, his poorhouse home on St. Helena (actually a mansion, not a palace like Malmaison, though for the location . . .!) he was later overheard to have said, “You think THIS is miserable? Try this: riding horse-back all the way from Moscow to Paris, in JANUARY, with a bunch of pissed-off Russians behind you, with a bad case of bleeding piles! That’s misery right up the old you-know-what! An empire sized pain in the imperial ass!” It is entirely possible that not a single palindrome has been written since the invention of TV; its electronic opium consumes the time people formerly spent in reading, conversation, and contemplation just to pass time which could seem to move at the speed of a drifting continent. We’ve traded those three delightful things for the lowest common denominator of talk show trash, bad TV news, and insipid 30 minute sitcoms with bad writing, bad acting, bad jokes, and the jiggle shot. Naturally, I have excluded coverage of SEC and NFL football games. The reader will understand and no doubt approve of this exclusion. “I would like to complain about the lack of activities here on St. Helena. I sure would like to have a satellite TV hookup if I could get it!” declared Napoleon. “Looking over the St. Helena landscape watching the sheep graze as I have done for the last 365 days in a row when it wasn’t raining is beginning to become rather tedious,” he added. “What is satellite TV, General?” asked Sir Hudson Lowe, the English commander on St. Helena, technically Napoleon’s jailer, refusing to call him Emperor, recognizing him only as “General”, which infuriated him. “You English are so not with it!” Napoleon said huffily, as he turned his old mare back towards his Poorhouse, trotting off into the cold, misting wind, looking rather silly as his short, formerly imperial self sat perched on two pillows atop his saddle, a concerned look on his face worthy “Me! Me! The glory of Europe reduced to a mere walk on an old nag in this god-forsaken place!” he cried to himself, “And not even the comfort of Satellite TV!” He hung his head as low as the bony nag upon which he sat in greatly pillowed discomfort and despair, a mere shadow of his former self. Such do all men become when discontent becomes the thing to which they cling. Little of what has been reported here of this glimpse into the personal final days of Napoleon has been recorded by the historians. The reader is advised to make his own assessment of its veracity. I suppose Napoleon would say that things did not work out like he planned. He was not alone in that. So many things don’t work out like we plan. Napoleon planned on being the emperor of all Europe, a restored Rome with Gaul as its new capitol and himself as its new Caesar. Some just plan on having a normal life; grow up, get a rewarding job, find a girl, get married, raise a family, and then retire peacefully, trying to enjoy each milestone of life and those periods in between while staying healthy and avoiding the poorhouse. The juxtaposition of those two seems ludicrous, doesn’t it, Napoleon and his plans and an ordinary life? But it only seems so on the surface; just a little deeper and it is easy to see that both are difficult to achieve. Life has so many variables, some of them too dark for contemplation. In today’s economic climate, the person who has an adjustable rate mortgage and played the game he was encouraged to play of thinking that there was no real payday for years of credit abuses, encouraged by fiscal entities and our government to believe that one could spend one’s self to prosperity has about as much chance of avoiding the modern poorhouse as becoming emperor of Europe in a restored Roman empire. Debt is the new modern-day slavery. Other than perhaps the chemical things that normally addict human beings, debt is the only slavery that one willingly submits one’s self to that I am aware of. I promised to report on the costs of chemo. Below is the first chemo bill from Hemosapien, which covers my second round. You can compare this to what it cost at Big-as-Texas Cancer Center. There is a big difference. I will publicly eat some crow later, for now, though, here’s Hemosapien’s bill. They are shown as thumbnails. Click on them and you’ll see the full size rendering. I asked for a detailed bill from BATCC and they sent me one for the physician services only, no hospital or pharmacy charges were included in the detailed bill. I asked again, and they sent me one that had the lab charges. Are they reluctant to send me a detailed bill for the chemo and hospital part? I will ask a third time. I find it ironic that the statement they sent had all the charges on it, but apparently a detailed bill must be asked for three times and sent to you over three different mailings. Of course, if that is the case, it is a human fabrication that has made it so. The statement sent to me is a summary of the individual charges. The summary is based on detailed individual charges that are the very basis for the summary. I’ll bet that the computer software menu on BATCC’s computer says something like this: “Press <ALT><F9> to print out a detailed customer statement”. It should be so simple. $12,308.85? What a difference! For $12,000+ I will bring my own coffee! The crow? I’ve already started eating it. While it looks like I’ll run substantially over my annual insurance limit, I appreciate Hemosapien and the value that his clinic offers me. I have already asked him to help me control my costs, and he has already done so more than once. My early comparisons of Hemosapien’s clinic and BATCC were based on an ignorant speculation, which was all I had at the time. Some of my ignorance has been ameliorated; some of it has not, but the ignorant part that remains is there because I am too ignorant to recognize it as ignorance. When a pertinent factual ignorance-modifier is sent my way, it is noted, digested, and carefully applied to the “CREDIT” column on the ignorance ledger. Unfortunately, the balance I owe to ignorance is still pretty high. As what I owe to Hemosapien and BATCC increases, the balance I owe to ignorance comes down. When the ignorant balance reaches zero, I will owe lots of money to others. But, hasn’t the personal life-education that frees one from ignorance, the old “school of hard knocks,” the old “live-and-learn” always been expensive? It’s as expensive as the treatment of a serious disease. It’s as expensive as chemotherapy. Sometimes, the lessons that life teaches can be fatal before the lesson is completely learned. How expensive are those lessons? What would those who learned so harshly trade in money for the chance to go back to earlier lessons, and apply what they learned to their lives to prevent the harsh lesson they would then know is approaching? There is no way to place a monetary value on this. There is no way to go back and recapture a lost life’s lesson. We must all learn in real time. I am off today to start round three of the chemo. I will bring a thermos filled with coffee. I gleefully got the old thermos out last night. I can think of 12,000 reasons why I am proud to bring my thermos. I’ll see Hemosapien. I’ll tell him that y’all said hello if you’d like. In fact, I’ll tell him that hundreds of you readers sent him your best regards. He’ll like that. He’ll read this here and know that I made it up, but he’ll laugh about it. He is a good sport. You’d like to meet him away from his office. He’s a very nice fellow. I hope you never have to meet him in his office as your physician, or as the physician for someone you love. He’d understand that, too! BATCC and Hemosapien’s clinic? They are simultaneously similar and yet worlds apart. Hemosapien does not focus on research. He and the other physicians there will never win any Nobel prizes for medicine. They will go to work every day and treat their patients to the best of their abilities, using every tool, procedure and pharmacological innovation available to them for the care and well being of their patients. They will have some great victories in their treatment of their patients. They will also have some great defeats. They will enjoy those victories and wear their laurel wreaths for the glorious moment those victories provide them, until they are forced to return to their reality of very ill people who depend on them for treatments that will prolong, or give them back their lives. They will painstakingly search for words to offer hope to some who, in all reality, know that their hope is abandoning them. They will try not to let the disease that is cancer get to them. They will try to maintain their clinical detachment. They will be mostly successful in this; but at times, their professional training and clinical detachment will fail them utterly, and as humans beings are wont to do, they will try blame themselves and their own ignorance for what they perceive to be their personal failure; they will think that their best is not good enough. They know better than this, but they will do so anyway. Hemosapien and his clinic colleagues are not alone in this. Gooday faces the same thing; he and his colleagues at BATCC, many of them potential candidates for that Nobel prize. They will treat their patients and study and research every possible avenue to try to find new treatments and cures for this disease called cancer that affects so many of us, and nearly all of us if something else doesn’t kill us first. Hemosapien will benefit from their research. His patients will benefit, too. I wish them all great success! The Poorhouse? If I am fortunate, I’ll live long enough to be able to get in it. If so, then I’ll at least be in good company; Napoleon lived there, too. He’d be glad to see me. I enjoy good conversation. I enjoy lively debate. I am fascinated by this person who managed to accomplish tremendous things in light of his modest beginnings, though he did so with much blood on his hands, because of which I am not envious of him. Maybe when they send me to the Poorhouse, I’ll be able to bring my recently disconnected but still functional Satellite TV receiver and a TV. We’ll watch some football games together. I’d teach him to be an Ole Miss fan, and a Giants fan. Of course he’d immediately be a Saints fan, because of New Orleans’ French heritage. In the middle of a play, he'd He'd shout out directions to Drew Brees in French. When an official made a bad call, he'd furiously cuss him, abandoning the French which would not come fast enough to his mind, in favor of his native Italian ( or eye-talian as my Grandfather would say!). "Italian?" the reader now asks himself as if I did not know what I am talking about, adding smugly, "Napoleon was French! Italian wasn't his native language". During the commercials and at half-time, Napoleon could tell me all about his retreat from Moscow on the hard-frozen Russian steppes while suffering terribly from bleeding hemorrhoids. I’d hardly be able to sit still while he was in the midst of the telling! 9/28/09 We Hear from Our Friends in Georgia I got this e-mail last night: Dear Debbie and Chris, Sorry that we are so long in returning a greeting from Southwest Georgia. Grace has been very involved in working out a plan with her doctors based on our Houston experience and is having a tough go of it with the chemotherapy treatments. We enjoyed the two CD's you sent and thank you so much for sharing the music and we will check out your website for the videos. Hope all is going well for you and we did enjoy meeting you on our first visit to Houston. Best Regards, Mr. Grace Debbie and I were gladdened to get that e-mail after such a long silence. Gladdened to get it and simultaneously saddened that it did not contain the good news we had hoped for. There is so much contained in this short e-mail. There is pain, suffering, determination, persistence, concern, care, and a whirlwind of trouble as well as hope. Mrs. Grace is in my earnest prayers. Mr. Grace, too! The things contained in the short statement, “a tough go of it,” can be considered at length by those who have had or are having a similar experience and not as completely, but with more dread, wonder, and speculation by those who have not. The side of effects of chemotherapy can be debilitating. The effects of no chemotherapy are even worse. The worst possible scenario is ineffective chemotherapy with debilitating side-effects. That is the place where many people find themselves, today. They and those loved ones who care for them are worthy of our prayers and support. When you see them, and you should go see them if they are receiving, don’t ask them how they are doing. It is too hard and wearying for them to formulate an answer to that question. Ask them, rather, about how they are doing, TODAY! It’s OK not to ask them anything at all; rather just to be there and tell them you came to see them. If you’re there in their midst and silent long enough and if they feel well enough, they’ll talk. If not, they’ll appreciate the briefest touch of your hand on theirs and your company. It is good to be cognizant of your surroundings, and not overstay your welcome. Sometimes patients have so much on their mind they are driven to distraction. If their visitors take this personally as an affront, it is a grievous faux pas. If they are not receiving, then you must understand. In the midst of the distractions of chemotherapy and dealing with terminal illness, the skin lesions, constipation, diarrhea, hair loss, projectile vomiting, compromised or non-existent immune systems, multiple organ crises or failures, not to mention post-surgery complications, all combining in the midst of the extremely personal mind-numbing thoughts of their own impending death in a manner not casual, the cancer patient may sometimes feel like they just wouldn’t be a good host. Sometimes, they just don't feel like chit-chatting! That’s when a card works wonders! 9/26/09 Calmly, Now! And In Perspective! My last post got me a few phone calls and several e-mails. Quoting the great philosopher, Lester Flatt, in his immortal song, Over the Hill to the Poorhouse, raised some alarm. I think the last line of the chorus that I previously quoted did the trick. It was not some crafty, caged sentiment I was trying to imply to the reader. It is the Poorhouse part that was really on my mind. While it is possible that a complication from the CLL could crop up causing my rapid demise, say, acquiring the swine flu and having it wreak havoc due to my compromised immune system, that is not imminent, nor guaranteed. I am not in immediate peril from the CLL. In fact, the CLL currently is in flight from the chemo. While the chemo is working its magic on the disease, I am suffering from a few side effects which are unpleasant and unwelcome. It is a thing to be endured and I am enduring it. The Poorhouse In America, you don’t go to prison for owing money. Thankfully, our founding fathers were disapprovingly familiar with English law which permitted one to be thus sequestered for debts. The only way I am aware of in the United States that one can be incarcerated for debts is to not pay your child support, and I say good on that. In the days before bankruptcy laws, a debtor could be, after civil suit and judgment, summarily evicted from his own property with no further protection from the law. Now, a bankruptcy filing would protect one from this immediate threat. Many counties used to have an actual Poorhouse. That is where those debtors were allowed to live until such time as they could make there way out of it and back into better circumstances. It was mostly the old, the infirm, widows and orphans, and even then, a few chemically dependent persons, who inhabited the Poorhouse. While counties don’t operate Poorhouses today, having other social safety nets available for their citizens, we have something similar in the elderly person with no assets who is no longer able to care for himself and the Medicaid/Nursing home scenario. You are all familiar with this. Folk music has always had that maudlin and morose side, particularly that Appalachian variety of which I am so fond. We have Flatt & Scruggs singing about going Over the Hill to the Poorhouse, and Jimmy Brown the Newsboy, perishing out there in the cold with no hat upon his head and no shoes upon his feet. We have the Stanley Brothers singing about Mother’s Not Dead, She’s Only A Sleeping and of all things, The Terrible Schoolbus Wreck, about the death and misery visited on children and families after a Kentucky schoolbus went over the rail and down the side of a mountain. While this actually happened, only Carter Stanley would have thought about celebrating this in a song. Ralph Stanley’s, Oh! Death!, also comes to mind. The lyrics, I'm death I come to take the soul, Leave the body and leave it cold, To draw up the flesh off of the frame, Dirt and worm both have a claim, are starkly less than subtle. Then there is Bill Monroe singing about The Little Girl and the Dreadful Snake with some of the most blatantly maudlin lines I can recall, “I heard the screams of my little girl far, far away, 'hurry Daddy there’s and awful, dreadful snake'. I ran as fast as I could, through the dark and dreary wood, but I reached my darling girl too late.” One can almost imagine more lines, never written, or if so, wisely never published, perhaps going like this: When I found her, legs swollen and blackened, flesh bursting with terrible pain. She screamed and she screamed and as in agony, her sweet soul old Satan would claim. Of course, that last line is my own fabrication magnifying the darkness of these songs, and what could be darker or more terrifying. How about the Louvin Brothers singing about The Great Atomic Power, a gospel song with promise, but what death and destruction they go through to get you there: When the mushrooms of destruction could rain down upon our land, wreaking horrible destruction, blotting out the works of man. True? It certainly could be, but the question is Why??? We Bluegrass fans acknowledge and laugh about that side of the music and frequently refer to that fictitious song The Awful Fire at the Nursing Home. The mental images created by that title at least equal those called forth by The Terrible School Bus wreck. These songs have tragic endings, and tragedy, as an art form, particularly in theatre, has been around for thousands of years. No doubt, tragedies help people deal with tragic circumstances they have experienced in their own lives, else, why would anyone waste any time on them? Shakespeare wrote comedies and tragedies, but far more of the latter than the former. Tragedy sells. Today, tragic romance is still a genre in movies and song. Tragedy is one of the things we consistently face in our human experience, and I’m sure that among the people of Cambodia, there has been written a song that reflects the horror of Pol Pot and his killing fields. If it were done in the Bluegrass manner, we would have blatant descriptions, with absolutely no subtlety, of rotting flesh, and torture, and the smell of death. We catch a glimpse of this in Solzhenitzen’s Gulag Archipelago, and A Day in the Life of Ivan Denisovich. A glimpse in Ayn Rand’s We the Living. In Upton Sinclair’s The Jungle. In John Steinbeck’s The Grapes of Wrath. George Orwell’s 1984. James Agee’s Let Us Now Praise Famous Men. Jerzey Kozinski’s The Painted Bird. More than a glimpse in a Dorothea Lange or Walker Evans photograph or in Civil War photographs, in WW1 and WW2 photos, and all the photos of the horrors Auschwitz, Bergen-Belzen, and others. I suppose that if photographs and literature capture this stark, offensive reality in the most unsubtle of manners, by what manner of thinking would the song lyricist be denied? Now on to perspective Filters change our perspective. Much as a filter changes the light we let into our camera, the filters of experience and perspective change our thinking. Filters on our audio equipment reduce or eliminate certain frequencies which our ears find tedious and enhance others that our ears find pleasant. We have similar filters for our thinking when events are viewed from where we are standing, or at a particular moment. Back to the lyrics of Oh! Death!, the writer says, “My wealth is all at your command If you will move your icy hand.” At this moment, I do not feel death’s icy hand, therefore, I am still concerned with my bank account. Were the grip of that icy hand tightening around my throat, I might think the chemotherapy was a bargain at ANY price and be begging, borrowing, or stealing wherever thing's could be begged, borrowed, or stolen to gladly exchange it for another moment of life. The difference is perspective in the midst of a tempering circumstance. Gooday says that he and his colleagues are hot on the trail of a cure for CLL. That is the truth from his perspective. I welcome his determination! He has devoted his entire professional career to this quest. But, what will it cost when the cure is found? If it exceeds my insurance resources, or my insurance won’t pay for it, how will I proceed? They already have curative strategies, in the form of stem cell transplants, which I cannot pursue, because I am not currently a candidate (myriad hazards lurk for those getting stem cell transplants! It is a last resort!), but if I were, I could not afford it. But, would I trade everything I own for it? What if I trade everything I own and it the cure does not work? What if I trade everything I own and the cure works, but I get killed in a car wreck on the way home from having received the news from Gooday that, “You are now completely cured!” How would I answer Calvin when he says, “Your fate was foreordained from the very foundation of the universe.”? Or Luther, when he says, “God foresaw this, and His foreseeing cannot be found to have been false, but He did not foreordain it”? And, what is the practical difference? What if a frog had wings? What’s a day worth? A week? A Month?” A Year? If we died today, versus tomorrow, what is the value of that? Is our demise on one day versus another any less painful to those we leave behind? What is our money worth? What will we trade it for? What is our true wealth? All these things deserve careful pondering, but pondering only yields more questions with no hope of permanent answers. The answers change with perspective. The answers change with experience. The answers can change as often as the wind, or they can be as fixed as a pin-hole lens views any focal point from near to infinite space, no adjustment necessary. And fixed or variable, they answers we cling to can be wrong. Hemosapien told me, “You have CLL. You will have CLL until you die from it, or from some complication of it, or with it, but you will have it until you die.” That is the truth until Gooday and his colleagues around the world come up with a cure. Will I die from CLL today? The answer to that is: no there is not a chance that CLL will directly cause my demise today, September 26, 2009. Will I die today from some complication of the CLL? The answer to that is: while extremely unlikely, it is possible. Will I die today from something else? The answer to that is: the odds are far greater, but still not very likely that I will die today, for any reason. Will I die one day, regardless of the reason? That question is rhetorical and not worthy of an answer. Will I one day die because of a complication caused by this lard biscuit with a piece of country ham that is currently in my left hand that I am enjoying immensely as I type this with my right hand, pecking with greasy fingers, the grease from my fingers shining on the keys? Does my enjoyment today mean my demise tomorrow? Will the ham biscuit have been worth it when Hemosapien and Gooday lean over my failing body and tell me, “Because of your proclivity to overindulge in anything other than Jack LaLane type fresh asparagus and mango juice with pulp, your ham-lard-biscuit heart is failing, and we are no longer able to treat you for the CLL, which is directly killing you and will probably be finished with it’s work in the next few minutes,” and then adding, “Do you mind settling up on your bill before you pass?” The answer? Well, that certainly is a matter of perspective. Since my heart is not failing me at the moment, the answer is resoundingly in favor of a second ham biscuit, the first one now just a memory, the evidence of its existence being reduced to a certain sheen on my moustache, glistening, oiled keys on my Voltaire said, “Let each of us boldly and honestly say: How little it is that I really know!” I am boldly and honestly declaring that I know very little, but I do know this: Both times I have been to chemo, and both times I have been to BATCC, and many times I have sat in Hemosapien’s office waiting for my appointment, I have seen people who I believe would gladly trade everything they had, immediately and no questions asked, for something that promised them the hope of delivery from their disease, people who are in immediate peril of dying from their particular genetic anomaly that is cancer. Their perspective is different than mine, now. I am still looking for a bargain. How fortunate I am!
I've also got this beautiful girl as my houseguest this weekend. She smiles at me whenever I look over in to her playpen, just as wide awake as she can be at this early hour. What a way to start one’s day! What a change of Perspective! 9-22-09 It’s Over the Hill to the Poorhouse The lyrics of the Lester Flatt tune keep playing over and over in my head: I’m old I’m helpless and feeble And the days of my youth have gone by It’s over the hill to the poorhouse I must wander alone there to die The dying part we all must face, sooner or later. It’s the POORHOUSE part that is really on my mind after getting my first post chemotherapy statement from the Big-as-Texas Cancer Center. The previously mentioned $100,000 annual cap on my health insurance is looming ominously on the horizon, just like the silhouette of the poorhouse backlit against the sun when viewed from the East in the evening. Since no published information was available that I could find on the cost of chemotherapy, I promised to publish everything I could so that it would be available to others. This is just the first one; there will be many more to come.
I have asked for a detailed statement of charges. I think I see a couple of things that may be a mistake. Also, we will see what the NET charges will be after my insurer takes the PPO discounts. President Obama wants to fix our health care. I have been adamantly opposed to the “public option.” As his health care proposals have compromised themselves down to a more common denominator, he has indicated that insurance reform is necessary. He would like to have his health care bill require that insurers cannot exclude people with pre-existing conditions, nor place arbitrary caps or fiscal limits on coverage. I have to admit that I would have been against that, too, except NOW I am seeing things through lenses with a different filter. NOW, I am all for removing arbitrary caps and limits on coverage. I am all for making sure that pre-existing conditions must be covered. I was fortunate enough to have one of those “union” health care packages that was egregious enough that Obama thought the benefits should be taxed as personal income. That changed last year when my group initiated an annual cap on coverage, limiting it to $100,000.00. This seems like plenty as long as you are healthy. It is NOT enough if you find yourself diagnosed with a serious illness. I’m old I’m helpless and feeble
And the days of my youth have gone by
And it’s over the hill to the poorhouse
LOCAL MAN SENT TO POORHOUSE
SO morose!!!! And now for something completely different!
“If you keep thinking about what you want to do or what you hope will happen, you don't do it, and it won't happen.” Erasmus
“a begging parasite who had parts enough to discover the truth and not courage enough to possess it.” Horace Walpole, on Erasmus
The future is determined because God has foreseen it and His foresight cannot be falsified. Martin Luther, in response to John Calvin.
God foresees the future because He has willed and determined it. John Calvin, in response to Martin Luther
Two of the greatest minds in all of theological history seem to be, no, not seem to be, but most definitely are at odds here. I am often torn between the subtle semantic differences between those two statements.
Below are a few unrelated statements with which I am completely reconciled, coming from, arguably, one of the most able minds ever produced in the history of mankind.
It seems that nature has given the dog to man for his defense and pleasure; it is of all animals the most faithful; it is the best possible friend of man.
We perceive here with grief that we have said nothing about cats. We will only remark that there are no cats in the heavens as there are goats, crabs, bulls, rams, eagles, lions, fishes, hares, and dogs; but in compensation, the cat has been consecrated, or revered, or adored, as partaking of saintliness, in several towns - and as altogether divine by no small number of women.
It is certain that a man who is well off will not leave his own land to come to yours.
Others say, "The prudent man makes his own destiny." But often the prudent, far from making their own destinies, succumb to it; it is destiny that makes them prudent.
We shall always have passions and prejudices since it is our destiny to be subjected to prejudices and passions; We shall know that it no more depends on us to have much merit and great talent, than to have a good head of hair and beautiful hands, We shall be convinced that we must not be vain about anything; and yet we shall always have vanity.
VOLTAIRE (Francois-Marie Arouet)
So much wonder to read . . . so little time!!!!
9/14/09 A Matter of Perspective
Of philosophy I will say nothing, except that when I saw that it had been cultivated for many ages by the most distinguished men, and that yet there is not a single matter within its sphere which is not still in dispute, and nothing, therefore, which is above doubt, I did not presume to anticipate that my success would be any greater in it than that of others; and further, when I considered the number of conflicting opinions touching a single matter that may be upheld by learned men, while there can be but one true, I reckoned as well-nigh false all that was only probable. Rene Descartes Descartes was one of the great thinkers of all time, yet he realized that he had his hands full with his devotion to philosophy. No wonder r-e-a-s-o-n was what guided him. Physicists, chemists, and engineers have seldom, if ever, differed 180º. Psychologists, sociologists, anthropologists, theologians, philosophers, economists, and other social scientists disagree by 180º all the time. If the experts disagree by 180º, is not any opinion between 0º and 180º just as valid? Why does one need an advanced degree from a major university and tens of thousands of dollars of student loans to pay off over the course of a meagerly compensated lifetime for the right to say they're an expert in a field in which ANY offered opinion cannot be discounted? I suppose one studies these fields because one simply MUST! No doubt opinions differ by reason of p-e-r-s-p-e-c-t-i-v-e! In this day of relativism, Descartes would be laughed off as old-fashioned. He believed there was an absolute truth. Hooray for him. Though he hardly needs one, having left a body of work that is still studied, I will be his champion. When he is studied, he leaves his permanent mark on young minds, though this mark was unintended by those who insisted he be studied for his incompatibility with an enlightened, modern society; having been read, Descartes is full of himself at the damage he has done. Better for the teachers of modern philosophy if he were ignored by them altogether. I started my second round of chemo at Hemopsapien’s office in Meridian on September 8, the day after Labor Day. He was out of town on his elk hunt, and Nurse J was also out of town. I was left in as good of hands as remained. I was amazed at how many patients that were there that day. There were absolutely no chairs for any persons accompanying patients, but room for patients, only; they even had to ask a couple of people to get up for patients to be served. P-E-R-S-P-E-C-T-I-V-E is relative. Perspective is certainly relevant to how you view a particular situation. Our training, our prejudices, our background, our prior experiences all influence our perspective. Our perspective governs how we P-E-R-C-E-I-V-E things, and how we perceive things becomes a reality for us; not exclusive of the absolute truth, but certainly a reality of our human experience. Here is what I perceived on my first day of FCR chemotherapy at Hemosapien’s office.
In fairness to Hemosapien’s office, I was comparing out-patient chemotherapy in a private practice in Meridian, Mississippi, with the number one cancer center on the entire planet. Was that a fair comparison? No, not by a long shot. Why then did I then expect them to be similar, thus guaranteeing my own disappointment? Simple: I had no other experience or basis by which to gauge them. I would have been better served had they given me some instructions as pertaining to my own comfort, but I could have thought of that myself; I do at other times, but not so this. Was I reasonable to think that Hemosapien and his partners would have a set-up like BATCC? No, it was unreasonable to think so. Now I know what to expect. I do expect a cup of coffee. If that were my cancer treatment facility, I’d have fresh coffee and a chair for ANYONE who came for treatment or accompanied a patient for treatment. I’d do so without fail. If they need me to get them a couple of chairs (folding lawn chairs would work better than what they had, which was NONE!) and the first week’s round of coffee supplies, all they need to do is tell me so. I suspect that Tuesday, September 8, 2009, may have been a record date for them as far as the number of patients treated. It was as busy as a small-town Sonic drive-in after a Friday night football game . . . as busy as a California fire-fighter beating on a brushfire with a pine-top . . . as busy as four nurses making random rounds can be when administering lots of toxic chemotherapy drugs to seriously ill patients. Wednesday was uneventful, though I had a long wait in the waiting room. Nurse J, who had returned from being out the day before told me that I should never have to wait over 30 minutes when I was there for chemo. Hmmm! We’ll see. I arrived on Thursday, 9/10/09 at 8:00AM, which was the time I was told to report back. There was no one in the waiting room. Though no one was there, I had to wait 45 minutes. While there was some confusion during the Tuesday’s visit, I chalked that up to what must have been a record number of patients. I still have no answer for the apparent confusion that seemed to permeate the clinic on that Thursday. There seemed to be many unanswered pages repeated. All the nurses were distracted. All the bosses must have been gone. I did get a cup of coffee on Thursday. Maybe that was because all the bosses were gone. I could SMELL the coffee. Thank you, Nurse Juanita, for that cup of coffee. Am I satisfied? I am now. If you ask me was I satisfied on that Tuesday, every gauge and device I had with which to measure was measuring my dissatisfaction. My gauges were skewed; mis-calibrated, being set to a faulty benchmark. My perspective was wrong. I was making an unfair comparison. I was glad that Hemosapien was not there. Had I seen him, I would have perhaps behaved very badly; maybe as bad as that rapper who took the microphone away from the Swift girl at the MTV awards (which I really believe was a publicity stunt anyway!). Maybe not. I hope not. That hectic day one had me taking all my Rituximab, and 1/3 of the Cyclophosphamide and Fludarabine. I had the F and C on Wednesday and Thursday as well. The further into the week I went, the worse I felt. By the time I had finished on Thursday, I was feeling pretty bad. By the time I got home, I was feeling really bad. I went to bed and stayed there. Friday, I was no better. Here, again, my perspective was skewed. At BATCC they had prescribed this wonderful anti-nausea medication called ZOFRAN. They don’t use it nearly as much in Meridian, preferring other drugs, perhaps, because it is so expensive. I remember when I got my prescription filled, that it was a drug for which my insurance said you had to have prior authorization or they would not pay for it. They did not pay for mine since I had no such prior authorization. It cost over $100. When Debbie called me to tell me that, I was at the point where I would have paid far more, and a hundred bucks would like a bargain if it would do what I needed for it to do, which it did, and I’d certainly glad and would pay it again. When they gave me the prescription for it at BATCC, I heard them tell me that ZOFRAN was very effective, but became less so as time went on. I HEARD THEM TELL ME SO, but HAVING HEARD THEM . . . I did not HEAR them. Old optimistic me said to myself, “Well that means that it will become less effective perhaps on round 5 or 6 of the chemo, and then it will probably only be slightly less effective,” with me going about my merry way, just a whistling and singing happily. This is where speculation can have one sailing blindly into treacherous waters. Nurse Susan might have imagined what I was thinking and warned me, “Now, Chris, you might be getting too far out there. The Zofran can quit working at any time. The next time you take it, it may be completely ineffective.” Nurse Alice might have anticipated what Nurse Susan was going to warn me about and further reiterated, “Mr. Sharp, Zofran is a wonderful drug that must be used sparingly. A patient’s individual tolerance may vary greatly, and your tolerance for the drug may be reached very soon. Do not expect it to work every time.” Gooday, possibly suspicious about what Nurse Alice and Nurse Susan had failed to perceive in my unspoken misconceptions and failed to warn me about might at least have said to me, “Now, John, this ZOFRAN works really well, but don’t be surprised if you have quite a bit of nausea. This FCR is powerful stuff.” But, nooooooo! Not a one of them read my mind, and I am furious about it. They TOLD me, I HEARD them, but I didn’t HEAR them. I certainly did not expect ZOFRAN to lose its effectiveness during round TWO of the chemo. Where does that leave me for rounds 3 through 6??? Like a famous historically fictional character in another melodramatic moment, I echo, “I’ll think about it tomorrow.” Leave it for now, so that you will know: for most, NAUSEA comes with CHEMOTHERAPY. I lost six pounds this past week! I do not recommend CLL and Chemotherapy as a weight loss program. Do not try it at home! PERSPECTIVE! My perspective has been changed. My perspective has been purged. My perspective has been modified by my experience. My perspective has been modified by an altered perception. Has my perspective been contaminated with my murmurings and complainings about my own discomfort? If you say yes, then allow me to explain my changed perspective. The father of an co-worker, a friend to my family, passed away last Friday, September 11, 2009. His name was Jim. He was also a patient of Hemosapien’s. Jim had lung cancer. His chemotherapy treatments and radiation were so unbearable to him, he finally said, “Enough!” From that time forth, Jim saw very little of his home, and far more of the inside of a hospital room. They buried Jim last Saturday. I had gotten up early, took my ZOFRAN, took a nice hot shower, shaved, and put on my favorite suit and a new tie. My wife remarked on how nice I looked. I was ready to go hours before I actually had to go, but as time went on, the ZOFRAN was becoming increasingly less effective. I finally gave up any hopes of going to Jim’s funeral. I could not even talk to anyone on the telephone. Sorry, Daddy. While I was originally complaining about no chairs, no coffee, the Spartan amenities offered by a private health practice in Meridian, Mississippi, versus the amenities offered by the number one cancer center on the EARTH, about having to wait a few minutes longer that I was supposed to in the waiting room, about the apparent confusion in those who were serving me, and about the increasing ineffectiveness of the ZOFRAN which lead to SOME nausea, Jim’s final moments of life were being consumed by his cancer. The pettiness of my complaints and observations slaps me in the face, and are at best UNDERWHELMING in the face of the circumstances in which others find themselves. What about Hemosapien and his partners and their private-practice-out-patient-Sonic-Drive-in-esque-Chemotherapy-Infusion-unit? I am thankful for them. My community is fortunate to have them here. It was certainly more convenient than the more amenable world-class accommodations in Texas; I was home every night, and feeling bad at HOME is far more preferable than feeling bad in another state, even if that state is the great and sovereign Lone-Star. What about my nausea? As has been said so succinctly by some wise person in ages past, but handed down to us from the lips of grandmothers, “This, too, shall pass!” Perspective! It’s all about perspective! Mine is a whole lot better, now, but the price which others seemingly pay to teach me is prohibitively high. If Calvin utters a word, I’ll thrash him. Today is my Descartes day. Both knew that an absolute truth was out there. Descartes just wasn’t sure what it was. He may have gone to his grave wondering what it was. I hope not. Some days are like that. Some lives are like that. 8/29/09 Measures and Benchmarks People measure things. We get out our rulers, our scales, our other devices, and we measure, we weigh, and we observe. A man wise in so many, many things once said, “Man is the measure of all things: of things which are, that they are, and of things which are not, that they are not.” Someone also once asked, and it has been often re-asked, ”If a tree falls in the woods, and no one is around to hear it, does it make any noise?” I have also heard it as, “If a tree falls in the woods, and no one is around to hear it, does it make a sound?” Protagoras must have been the first man to pose this question, because it seems to be the vary basis of his premise: if no man measured it, it does not exist. Of course, I am speculating on how Protagoras might have answered this question. It is not recorded that his views ever changed. They might have. Perhaps his philosophy morphed into something similar to Bertrand Russell’s. We will assume that no other living entity heard the tree fall, either, and make no basis here for frequencies that can be heard by living entities other than humans. If no one hears the tree fall, then it cannot possibly make any noise, since noise is sound waves harnessed to human-subjective interpretation. Before I learned to like the music of my grandfather’s generation (and earlier!), I thought it was noise. He (my grandfather) thought the music of my generation was noise. My son’s generation likes a variety of music, but they are drawn to hip-hop, which is noise to me. What is noise to one is music to another. We must have a human to interpret the sound for it to be labeled noise. Sound? That is a different argument. Sound is pressure waves vibrating in a medium (such as air) through which they can travel at frequencies humans can hear, usually falling, with some exceptions, in the range of 20 hertz through 20,000 hertz. Anything below 20hz is sub-sonic, and anything above 20,000hz is hyper-sonic. We generally can’t hear them, though with enough power we can certainly feel sub-sonic waves. If sound is those waves between 20 and 20,000 hertz, then the unobserved falling tree certainly made a sound. If sound must be interpreted by a human to be sound, then the tree silently fell. Unless there was a vacuum surrounding the tree, then it certainly emitted pressure waves of various frequencies, many between 20 and 20,000 hertz, which by definition are called sound. The argument that if no man measured it, then it does not exist, is ludicrous when it comes to sound pressure waves in air. It is less ludicrous when applied to the word “sound.” It is entirely reasonable when applied to the word “noise.” Yet it fails to satisfy on any level, since the tree did fall and trees do not grow in vacuums. The variable is the lack of an observer. An observer might have a decibel meter and be able to accurately (within the limits of the accuracy of his meter) measure the exact level of sound at a given distance that the tree made when it fell, which the lack of an observer or a measurement will not change. If, then, something can be measured but is not, does that mean that it does not exist? Did atoms not exist until they were able to be measured? Did protons, electrons, and neutrons not exist until they were able to be measured? What about quarks? What about sub-sub-sub-atomic particles? One can argue that for all practical purposes, these things did not exist until they were measured, but that is a diversion to semantics that serves only to illustrate the imprecise nature of human communications and the dynamics of language. Protagoras surely meant to challenge us to think bout this. Surely he did not mean that things do not exist because a man cannot measure it. "What does this have to do with CLL," I can hear being asked? Perhaps nothing. But relative to CLL and ME, everything! When I was first diagnosed with the disease, it was the disease’s measurer that was the initial target of my vituperation. That Hemosapien! That wicked, evil Hemosapien! He had the audacity to measure this disease, and give its name to me, therefore, since he is within my sight, he must be my enemy. I must have been taking Protagoras literally. A man measured in such a way that it became reality to me. If Hemosapien had not dared to measure, then the disease could not possible have existed in my body. These egregious thinking must be common to everyone who is diagnosed with a serious disease. I have explored this before, and obviously I am not through with my explorations. I have a significant amount of remorse at having wasted energy feeling that way, and even more to think that I initially was suspicious of those who would help me. I am surprised at myself. I reject Protagoras’ notion, yet it was actively influencing my thinking in a profoundly negative manner. Having said all that, I’ll say this: I go to Hemosapien tomorrow. He will measure, he will weigh, he will observe. What he measures, what he weighs, and what observes will have existed prior to his measurements, weights and observations. Subsequent to his measurements, weights and observations, we will have more information with which to make plans and preparations for my second round of chemo which starts the Tuesday after Labor Day, or make other preparations to ameliorate any problems which have subsequently cropped up. Without those measurements, weights, and observations, for all practical purposes, no problems could possibly exist. One could be near death, having non-measured therefore non-existent problems, for all practical purposes. I utterly reject Protagoras as the paramount of human arrogance, right up there with Nietzsche’s subsequent declaration of God's demise. Perhaps Neitzsche took Protagoras too seriously. God asked Job, “On what are the foundations of the Earth sunk?” Job remained silent. Job was listening. If God asked Protagoras the same thing, it has not been recorded. If it were recorded, perhaps it might have indicated that he remained silent because he wasn’t listening. Perhaps he could not hear what he could not measure; that God, communicating in a way that could not be measured as sound, could not be heard when no one was listening. Perhaps His voice was perceived as noise: a noisy, belligerent challenge to Protagoras’ reasonable measurements. Perhaps Protagoras, not being able to measure God, dismissed him as non-existent, and being thus dismissed, God ceased to exist for all practical purposes. Rejection of philosophical principles does not mean that they cease to exist. Just like Calvin, when I think I have dealt with him for the last time, Protagoras rears up his ugly ancient head at MY invitation and this in the midst of rejection, in a most immeasurable way. I can’t measure him, yet his philosophy still exists; proof, I suppose, of the his philosophical fallibility. But surely he meant for his maxim to be used to challenge his young students from a smug complacency; to provoke them into a life-long internal debate in search for truth. Surely as an ancient celebrity, he was wiser than believing his own press. Surely he was after the truth. Surely the truth will one day manifest itself, regardless of our understanding of our measurements. 8/28/09 Hemosapien weighed and measured My blood counts are all good enough to allow me to go into my second round of chemo at the clinic in Meridian starting September 8. That is good news. Ol’ Hemosapien will not be there. He’ll be off on his elk hunting trip. Nurse J called me this morning to inform me that she had rescheduled me for earlier in the day for the first day of the second round of chemo. She did not know that I was getting Rituximab until this morning when she read the orders that Hemosapien had left for her for my chemo. She had originally scheduled me for 9:30AM, but once she learned that I was getting Rituximab, she decided that I needed to come in earlier since it takes so long to administer it. The earlier the better is my motto, anyway. I’ll be there at 8:00AM to start this second round. Gene Bush came down from Nashville to visit me this weekend. We had a good time playing on The Sucarnochee Revue. His Brother, C.P., also came over. We had a large time. The dry-rubbed smoked pork tenderloin I cooked was a big hit. Gene and I played guitars all Saturday afternoon, while C.P. listened and dozed on the couch. Either we bored him to sleep, or he was relaxed to a peaceful state by the music. I prefer the latter rather than the former. Gene and I debated which of the two it might be. We measured and measured. We failed to come up with the definitive answer. Perhaps we wasted some time debating measurements we could not accurately obtain. We did measure and agree on this: C.P. was sleeping soundly, and we sure were having a good time! 8/24/09 Dangerously Pondering Imponderables I got this handwritten note from Gooday. Among other things, it said, “I suppose I must help you keep this blog going. Always a challenge.” I appreciate that. I got more than one phone call from folks at BATCC checking up on my progress, and one that additionally indicated a couple of errors of a technical nature in some of my descriptions of things, which I am pleased to find out about and edit. I appreciate that, too. I like it that it does not seem that the check-up calls were scripted post-care calls, but were person to person among people who know each other, motivated by concern for my progress and well-being. The calls that pointed out descriptive technical errors were also from those who want this blog to be as accurate as possible. I am accurate in my descriptions of how I feel and think about things. (How could I not be? I might be deceptive, perhaps even disingenuous, but never inaccurate.) It is entirely possible that I might be inaccurate in a description of something technical, though, since my description is based on my understanding of things I only partially grasp. I am pleased to have those who read this blog point out how I might change something to make it consistent with medical reality and practice. Thanks to you all!! I got this e-mail from David-from–Tupelo. He obviously takes after his cousin he tells me about.
I am enjoying following your blog. You put a face on a disease that, even though very real, seems abstract to those not affected by it. Your detailed blog is a noble undertaking. I lost a first cousin to renal cell carcinoma in 2005. (My dad also died of renal cell in 2007) My cousin was 53, and you remind me of him. He had a thick mustache, thick hair, and wore round wire rim glasses. His parents, my dad's sister and her husband, both grew up in Mississippi.His dad came from an extremely poor family, but he retired as an ad executive in NYC. Even though he was raised in New York, he never forgot his southern roots, and is buried in the beautiful little country cemetery in Calhoun County, Mississippi, where all my dad's family is buried. Not only did he look similar to you, (except he was small frame), but he played the banjo, and was a prolific writer, being quite the wordsmith. He had a law degree in maritime law, and spent several years in Hong Kong practicing law before coming back to New York. I think he would have liked to have been a southern lawyer along the line of an Atticus Finch. If I didn't know better, I could read your blog and almost believe that he wrote it. Anyway, so much for that, but meeting you brought back pleasant memories of him. BTW, noticed in your bio that your birthday is July 4th, mine is July 3rd. And I did see Texans who knew about Ole Miss, mainly, because Jevan Snead is from Stephensville and played at UTexas his freshman year. My sister did make it to the "BATCC" on Saturday. They discovered blood clot in her lung on Tuesday. Further tests have revealed that her cancer has come back with a vengence, and she will now have to have strong chemotherapy until they can get the cancer controlled enough to give her the pre-transplant chemo. They can't start chemo until they can get her in a room. (Can you believe that she has been in emergency services for two days because there is not a single room available in the hospital?) The doctors told her that if she has the transplant now, the cancer will be back in three months. So, bottom line, her transplant has been delayed two months. My prayer is that they can at least get the cancer knocked down enough to give her the transplant. She has a positive outlook, but is having a hard time dealing with being away from her daughters, ages 16 and 8, for such a long time. Tell Debbie hello. Regards, David-from-Tupelo Henry David Thoreau: Most men lead lives of quiet desperation. Does that mean that some are noisily desperate, or not desperate at all? I suppose on reflection Thoreau was right. We are born, we toil, we suffer, and we die. In between, we have moments of sheer joy. It is the lot of mankind. We seek reconciliation by faith with a God we know exists by faith, HE being so real and near to us, though that realm is not measurable or directly observable, and therefore is rejected by the sciences which measure and weigh all things they can objectively observe; and being driven by Protagoras’ proclamation, our sciences in which we also have faith declare that HE does not exist, since HE will not be measured. Things can get complicated, but throughout this complication, HE is there. He calls, HE beckons, HE seeks reconciliation with us. Wise men long ago wrote down how HE has provided a simple way for us to be reconciled to him, in exactly the same way that a father would make a sacrifice for his child that he loves so much; perhaps the same way as a brother makes sacrifices for a sister he loves so much. We all seek this, we all long for this, and some embrace it, and finding the peace and reconciliation they so desired then go on in the face of the direst of circumstances or simple ordinary daily life, borne along by a grace they never thought possible, leaving the desperation far behind. Desperate CIRCUMSTANCES do not always require desperation in the people who face them. That is what I hope for David-from-Tupelo’s Sister. I would transfer all the desperation to her extended family, circle of friends, and her church family, and that that desperation would manifest itself in this manner: Desperate noisy prayers sent by desperately faithful people, faithfully and desperately expecting miraculous answers to desperate situations, and bearing other’s desperation, and the desperation of the beneficiaries, like insurance actuaries hope to spread the pain of loss across a spectrum of shoulders so that each shoulder has an easily bearable pressure of a mere few pounds per s square inch, like a good foundation sunk into good earth supporting a huge building, it standing erect and tall, weathering the worst storms. I am desperately praying that David-from-Tupelo’s Sister receives just the touch from God that she needs, just the one that God wants her to have. I know what I want and I think I know what her family and friends want, which is all the same thing. What does God want? That is a hard answer, because what we think God must want is not what seems to be happening before our very eyes. What we all really want, in he long run, is what God wants, but our human-ness sometimes forces us to wonder whether someone is asleep up there. Is that blasphemous? It can’t be, because I am certain that I am not a blasphemer. Is it sacrilegious? No, because I am not sacrilegious! (I am no Bill Mahr! <isn't that his name???> ) What is it then? It has got to be this. It must be this. Humans, chained by the constraints of time, the portion of which we share on this earth hardly being a measurable bump on it’s eternal scale, cannot see through the obscurity this spectrum that the things we endure here have no impact when weighed against the infinite, other than how they prepare us for it. It is a hard, hard schooling at the hands of a harsh, harsh instructor, or so it seems. I am reminded of the recent lesson I received based on the lesson that JOB received. It is still too fresh in my memory to ignore. And coming back to mind regularly is the Apostle Paul saying, “Faith is the evidence of things not seen, the substance of things hoped for.” Faith . . . the substance of things hoped for. Faith . . . the substance of things hoped for. Faith . . . the substance of things hoped for. The things we hope for have SUBSTANCE. That substance is our faith. We must cling to it. We must not abandon it. When we do, we abandon the most precious substance we have. If we dropped a five dollar bill as we were walking down the road, we’d stop and pick it up, never thinking for an instant that we’ll just abandon it. That five dollar bill has SUBSTANCE. If, then, faith is the SUBSTANCE of things hoped for, what is its value, or rather, what is the value of the things we hope for? We certainly wouldn’t abandon our faith over the price of a Happy Meal. At what price does its abandonment offer profit? So much to think about. So little to think with. My resources are strained, but not desperately so. 8/20/09 One Medicine Less Fortunately, I have never had to take much medicine. This seems to be changing, however. As I look in my travel bag, I see more and more – evidence that the fifties has led to this. I have heard stories of people who took so many different medicines, prescribed by different doctors, that they had to have a small valise just to hold them all. Their daily schedules had become focused around different medicines at different times. I have also heard that when their health continued to deteriorate, family members intervened, all the medicines were then collected and shown to a different physician, and many of those medicines eliminated entirely, or changed to others less incompatible with medicines that must be taken. The results of those stories were that, after weeding out several medicines in favor of only those which MUST be taken (like high blood pressure medication or blood thinners), the overall health and vitality of the patient improved dramatically. This is an interesting concept – anecdotal, but having enough powerful testimonies to dispel easy dismissal. Having said that, starting yesterday, there is one less medication I am required to take, at least temporarily. I do not need the anti-nausea medicine ZOFRAN anymore. I did not take it yesterday, though I carried it with me, not wanting to have it unavailable if it were suddenly (and suddenly is the right word) needed. After two days, my nausea appears to have subsided. That leaves me thankful for several things:
There is so much to be thankful for! Overall, the side effects of the FCR chemotherapy have been almost miniscule. There are still things that can go wrong, but all my numbers look good, and the chemo seems to be working according to its intended purpose. I did hear from David-in-Tupelo, via e-mail. Big-as-Texas got everything they needed from him in the way of stem cells, and he was able to go home on Thursday, August 13. His sister arrived in Texas on Saturday, 8/15, and started two weeks of chemotherapy the following Tuesday in advance of her bone marrow transplant. While I may not have all the facts straight, it seems that the her chemo will remove as much of the cancer as possible from her system, while simultaneously destroying as much as they can of her own immune system. When she gets the transplant, she will grow a new immune system, basically a clone of her brother's. She will be in Houston for several months. There are many pitfalls a stem cell transplant patient can encounter, and any pitfall is a major danger. We wish the best for her as she goes through this incredibly significant event in her life. I received an e-mail notice forwarded from the White House Office of Name Collection for Better Health Care. It said the following: Mr. Sharp: It has been reported to the White House that you made “fishy” comments about the President’s health care reform agenda. Consequently, you became the subject of an undercover federal investigation. The investigation, having been conducted under the auspices of the Department of Justice’s [DOJ] Fishy American Rehabilitation, Training, and Education [FARTED] Commission, has been completed, and you, having been found to be much too conservative for un-rehabilitated continued participation in modern, liberal society, are hereby ordered by FARTED to undergo a surgical procedure, called a Lousy Obstreperous Behavior-otomy [LOBOTOMY]. You can report anytime within the next 30 days to the nearest participating physician or health care provider of your choice to undergo this procedure. Unfortunately, the government, in an effort to help you get this new and much needed procedure, has determined that the only participating health care provider is the Department of Health and Human Services’ National Institute of Mental Health’s main hospital, in beautiful suburban Washington, D.C. This will be done at no cost to you, courtesy of the newly created Governmental Outreach to Citizens Healthcare Administration [GOTCHA]. So that you won’t have a thing to worry about, free secure transportation and escorts will be provided. You will not need any personal belongings, just be ready to go when the GOTCHA wagon arrives at your door to pick you up, sometime between midnight and 3:00AM on an as-yet-undisclosed date in the very near future. You should be prepared to stay for an undetermined, extended period of recuperation and rehabilitation. Sincerely, Vladimira Kutskinoffya, Czarina
Free GOTCHA provided FARTED ordered LOBOTOMYs for everyone! No waiting! I must be feeling good to have come up with that!
8/18/09 For You Readers
I have gotten a couple of e-mails from people who have just started reading the blog. I am thankful for readers. As a musician, I know how important an audience is. I certainly appreciate one. The last couple of e-mails have pointed out how awkward reading the blog can be since it starts with the latest and reads down to earlier and earlier posts. Sometimes later posts refer to earlier posts, and the reader is left high and dry, sort of lie the fisherman in the lagoon who finds himself stranded, absorbed in his fishing and failing to notice the tide has gone out. I have put things in the correct chronological order in a PDF file which you can download HERE. Just right-click on the link and save it to your computer. You can then read it at your leisure. I did not realize that this has grown to over 60 pages. Time flies when you're having fun.
On to other things, some of them indelicate, but so far I have been comprehensive in my blog, revealing my innermost conversations with myself, so it would be imprudent to fail to indicate that constipation is certainly a side effect of the chemotherapy. Today has brought some relief for which I am TRULY thankful. At this point, I am not taking the Zofran any more, so the nausea has subsided. I did have pretty restless sleep with the night sweats last night, but they said this would continue to improve, and finally they would be gone. I thought they had already gone, but last night indicated that I was perhaps a bit premature on this. I did have much more energy yesterday, but still ran out of steam about 8:00PM, thought that was an improvement.
I have been most fortunate.
Below is simply a diversion for those of you who are so inclined to be diverted. Lots to think about here. You decide!
Spirit is the “nature” of individuals, their immediate substance, and its movement and necessity; it is as much the personal consciousness in their existence as it is their pure consciousness, their life, their actuality. Georg W. F. Hegel
Man is the measure of all things: of things which are, that they are, and of things which are not, that they are not
Now faith is the substance of things hoped for, the evidence of things not seen. Paul, the Apostle
For there is no one so great or mighty that he can avoid the misery that will rise up against him when he resists and strives against God. John Calvin
8/17/09 The Physician, The Archer I had an appointment with Hemosapien at 9:30 this morning, for him to follow up after my having had my first round of chemotherapy at BATCC at the hands of Gooday and his staff. For all my friends at BATCC, please be advised that the in-house lab at my oncology clinic in Meridian, Mississippi, is able to do the CBC WITH differentials. It turns out that we are not as unsophisticated in the provinces as one might think. There are several tests which do not have to be sent out to different labs. I am glad they are able to do this since Hemosapien can have pertinent information for his immediate use. My blood counts are all good. My white cell counts are far below what they were a week ago. The levels that indicate kidney problems and other complications are currently in the normal ranges. I am feeling good, and I am thankful for the Zofran. Hemosapien wants me to take the Bactrim (an anti-biotic) he prescribed as a prophylaxis. They told me in Houston that they do not prescribe prophylactic antibiotics, but recognize that some doctors do, and to follow the instructions of Hemosapien on this one on my return home; so, tomorrow, I start the Bactrim. Hemosapien said to stop taking the Allopurinol until I start my next round of chemotherapy. It has done its job for the time being. I am to keep taking the Acyclovir, though. Looking over the papers that were sent by BATCC to Hemosapien, there is a lot for his office to do to help me comply with the FCR Protocol. I appreciate them doing all this extra work. Nurse Susan at BATCC sent in a large package of paperwork, blood sample tubes, pre-addressed Fed-ex slips and instructions. It is a lot of work for everyone. Earlier, I said that I appreciated my physicians and staff taking the time to do all these extra things for me. My physician friend Frank-in-Memphis left me a voice mail message that said, to paraphrase, “They do this because it is their job. Every one of your physicians would study, participate, consult, or do anything else within their power, because they want to provide you with the best health care possible.” Ol’ Frank’s voice-mail was sort of an admonishment, but the most kindly, friendly sort of admonishment. He is a friend; he is allowed to admonish me in the way that he thinks is for my own good, when the thinks I need it. He certainly is allowed to speak his mind. I will listen. I appreciate Frank-in-Memphis, Gooday, and Hemosapien. They are all so important to me. Hemosapien thought that it was funny enough to remark that BATCC had included instructions on how to do a blood transfusion in their instructional packet to him. I defended BATCC on this one. I asked him, “Hemosapien, don’t you think it natural that the number one cancer center in the entire world might think that they had best explain everything to those of us out here in the provinces, thinking that we just may not understand?” “I suppose so,” he said, but still sort of hurt. After defending them, I was sort of huffy about it, too. After all, this was some Longhorn folks being a little patronizing to a pair of Ole Miss Rebels. Well, Hotty Toddy, boys!!!! Harrummmph!!!! All in good fun, my Texas friends. After reviewing all my records and going over them in great detail with me, Hemosapien and I got down to some serious conversation. “I am going on a bow hunting trip!” he declared with great satisfaction. “Anyone can shoot an Elk with a rifle!” “Anyone can MISS one with a rifle, too!” I retorted. It seems that Hemosapien is adamant about the higher calling of the archer, and my wish for his hunt was amiss. I regret that. I have the highest respect for the skills of a bow hunter. I’d rather take a deer at 600 yards. Perhaps this is because my hunting skills preclude me getting much closer than that. Bow hunters have to have great patience, and they have to be very quiet; both skills which I am somewhat short on. I gigged him a bit. “I suppose in your quest for the pure hunt,” I poked and prodded, hunting for the sore spot, “you shoot a recurve bow, or perhaps a long bow.” “No, I use a compound bow,” he said. “Ah! The conversations you can have with other bow hunters on that issue are endless. I’ve noticed that as passionate as bow hunters are about their sport, there is serious disagreement between them on the purity of it, similar to discussions which revolve around traditional music, something of which I know a lot; or folks that take old cars and convert them to street rods vs. folks that just restore old cars.” “Everyone’s got their place! There’s no really right answer.” He said. “I suppose the real purists would have you making your obsidian arrowheads and fletching your homemade fire-hardened hickory arrows with buzzard feathers.” “And string my bow with sinew that I chewed into shape, twisted, and dried myself.” “They say Buzzard guts make the best bow-string sinew.” I replied. My reply was barely out of my mouth when he said, “Tastes too bad!” Our loud guffaws apparently could be heard all over the clinic, because Nurse J came in and delivered a slight reprimand. Being thus reprimanded, we returned to the serious business at hand. It seems that everyone’s got a place for their reasonable practices and ideas. Some gun hunt. Some bow hunt. Some bow hunters use modern compound bows made of modern materials, Some use recurve bows or long bows made from tried and true ancient methods. Some use carbon fiber composite material arrows. Others use arrows of a more archaic technology. Some still use obsidian arrowheads I suppose. Some use modern razor sharp broadheads that only open up on impact. This one claw hammers an old fretless open-back banjo. This other one plugs his in to an amplifier. One takes a 1936 Packard and restores it to its original glory. Another takes a similar Packard and puts in late model running gear and AIR-CONDITIONING! This doctor practices one way. Another doctor practices another. BATCC says no antibiotic prophylaxis. Meridian, Mississippi, says yes. One doctor looks at this, another looks at that. The results: remarkably similar, though the road may vary a bit. The arrow is sent to its destination. The car is driven with pleasure. The banjo played with passion. The Elk is dead. The cancer is on the run and being pursued. The banjo player pursues his fleeing former listeners. By the way, archery is extremely important in the history and development of mankind and civilization. No serious or amateur anthropologist should be without some information about it. If you would like to know more, I have a wikipedia link here. http://en.wikipedia.org/wiki/Archery It certainly is a good STARTING place. Hemosapien will be on his bow hunting trip when I start my next round of chemo. I will see him again on August 28, before then, though. My revised wish for his trip?
What’s all that got to do with Leukemia? You should know better than to ask that by now! 8/15/09 Round 1, Day 4: A Jackass Apologizes: Home Again
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I started to say something about the bean-shortage, but the bicuspid-less, hair-netted, other-grandmotherly lady’s look stopped me dead in my tracks. I moved on to the next hair-netted lady, hovering over her three food bays like an emperor penguin father over the egg he faithfully tends throughout the darkness of a desolate, howling Antarctic winter. This hair-netted lady presided over the meat. She had a look about her that one might see in the offspring of a union between Lee Marvin and James Coburn; I suppose to some not completely undesirable in a mature man, but absolutely remarkable in a woman. Her eyebrows were so bushy, she had them combed back as neatly as she could, which was far neater than my moustache, but not quite, just ever-so-slightly-not-quite, as bushy. Instead of a moustache on her lip, there were tiny sweat-beads. I was so fascinated I was peering, trying to count them. I lost count when her lips moved.
lf so much better than I am, as that they who are about me and see my state may have caused it to toll for me, and I know not that. The church is catholic, universal, so are all her actions; all that she does belongs to all. When she baptizes a child, that action concerns me; for that child is thereby connected to that head which is my head too, and ingrafted into the body whereof I am a member. And when she buries a man, that action concerns me: all mankind is of one author and is one volume; when one man dies, one chapter is not torn out of the book, but translated into a better language; and every chapter must be so translated. God employs several translators; some pieces are translated by age, some by sickness, some by war, some by justice; but God's hand is in every translation, and his hand shall bind up all our scattered leaves again for that library where every book shall lie open to one another. As therefore the bell that rings a sermon calls not upon the preacher only, but upon the congregation to come, so this bell calls us all; but how much more me, who am brought so near the door by this sickness. There was a contention as far as a suit (in which piety and dignity, religion and estimation, were mingled) which of the religious orders should ring to prayers first in the morning; and it was determined that they should ring first that rose earliest. If we understand aright the dignity of this bell that tolls for our evening prayer, we would be glad to make it ours by rising early, in that application, that it might be ours as well as his whose indeed it is. The bell doth toll for him that thinks it doth; and though it intermit again, yet from that minute that that occasion wrought upon him, he is united to God. Who casts not up his eye to the sun when it rises? but who takes off his eye from a comet when that breaks out? Who bends not his ear to any bell which upon any occasion rings? but who can remove it from that bell which is passing a piece of himself out of this world? No man is an island, entire of itself; every man is a piece of the continent, a part of the main. If a clod be washed away by the sea, Europe is the less, as well as if promontory were, as well as if a manor of thy friend's or of thine own were. Any man's death diminishes me, because I am involved in mankind; and therefore never send to know for whom the bell tolls; it tolls for thee. Neither can we call this a begging of misery or a borrowing of misery, as though we are not miserable enough of ourselves but must fetch in more from the next house, in taking upon us the misery of our neighbors. Truly it were an excusable covetousness if we did; for affliction is a treasure, and scarce any man hath enough of it. No man hath affliction enough that is not matured and ripened by it, and made fit for God by that affliction. If a man carry treasure in bullion, or in a wedge of gold, and have none coined into current moneys, his treasure will not defray him as he travels. Tribulation is treasure in the nature of it, but it is not current money in the use of it, except we get nearer and nearer our home, heaven, by it. Another man may be sick too, and sick to death, and this affliction may lie in his bowels as gold in a mine and be of no use to him; but this bell that tells me of his affliction digs out and applies that gold to me, if by this consideration of another's dangers I take mine own into contemplation and so secure myself by making my recourse to my God, who is our only security.
Blind Willie Johnson
urse Rona was to be his assistant today. I gave my cell phone to Gene and asked him to take photos of the biopsy tools. Shown to the left is the sterile package of implements of torture and pain, which would be shortly opened and used in a medieval manned on my body. I was ready, though. Throughout our previous conversation, I have been very verbose, just talking away. I told Hemosapien that I had taken two of the valiums he had prescribed for my sleeping to assist me during the biopsy. He laughed and said that he could tell.
doctors who love to use shitty instruments to torture their patients, instruments invented by Jim, the apprentice of the Marquis-de-Sade, shitty person that he was,” I thought to myself, having already used the word shitty in front of nice Nurse Rona as much as I thought I could get away with. I apologized and she said she had heard plenty worse during a biopsy.
“You are too professional a physician for any personal, petty vendettas,” I said to his ego more than to him; to my own ear, more than to him, hoping though, that this bit of flattery and appeal to his professionalism would yield at least a small dividend. I’m not sure that that worked, but I am sure of this: This bone marrow biopsy was not at all like the first one. While it was significantly unpleasant and intense, it was just significantly unpleasant and intense. It was not intensely painful. I had a few jolts of pain, but no where near like the first one. I was still thinking that the worst part was to come when Hemosapien announced, “All done now!”
Last Tuesday, after I had finished my long day of rituximab infusion, rituximab itself being an antibody produced in mice for use in humans, which is why it takes so long to give because my own body says, “Now, just wait a minute!!!”, and being pumped up on anti-nausea medicine and steroids, the steroids making me aggressive (just ask my wife!) and feeling like an 18 year-old line-backer on an all-star team, I headed down to the woods in NK-mode to hog hunt. In the photo on the right, you can see the bandage covering the IV port still in my left hand. I was rebuked by the nurses who said that I really didn't need to get wild-pig blood on my IV port, else my own NK cells be overwhelmed with things they can't handle. I received their rebuke in the nature in which it was intended.
There but for the grace of God goes John Bradford
of a freshman congressman on C-Span trying to look important while addressing no one during the after-hours orders, him mourning the thought of the excess time on his hands he had ponder all the things his most recent flare-up of the piles forced him to recall. Unable to endure the trot of the horse, Napoleon reduced the gait to a slow, slow walk, and noticeably grimaced at each step.
We left Texas