Tuesday, February 24, 2009
Well, again my brother demonstrates that his hubris and supreme confidence is as much prophetic as it is so many times bluff and bravado. Perhaps at cross purposes to one another at times, but reassuring , even comforting , at others. Sean is frenetic and irrepressible . He brings manic chaos where ever he goes; that can be both inspiring and frustrating, but his passion and execution is always uncompromising.
We Jacksons have all been beneficiaries to Sean's generosity and his relentless determination to rally for the call to battle. There is no mistaking that the fury of his conscription would be Quixotic and charged with intensity, contentious and brazen with purpose, but, ultimately his intellect and deep sense of fairness constrains that impetuous tenacity. Order and peace are restored and left dormant for now until, inevitably a banner is raised and call sounds and once again Sean is leading the fight, willful and indomitable. He is beloved.
And so it is today, Sean proves, once again, his unflinching dedication to his family with the chivalrous sacrifice that exemplifies his true strength. That at times he can seem bigger than life. Sean will be my bone marrow donor! This is no small contribution, considering what he'll have to go through to do it. Sean predicted that he would be a match from the very beginning, with his usual Promethean assuredness , but I dismissed it at once. After all, there was only a 25% chance for match and that's not enough to indulge in hope. Nevertheless, Sean diligently prepared for the donor kit and expedited its return. The match is all but perfect; meeting 8 out of 8 of the criteria required.
The consequence of this is incalculable! We now have a much better chance for success given that a sibling donor presents the best results. In addition, having a donor this early provides for a faster transition to transplant therapy, virtually eliminating the long excruciating search through the donor registry, that often takes up to 4 months or more. We're far from completing this long arduous journey and it's too early to to have any expectations.
I remain optimistic as always with Jenel at my side, reminded every day of the sublime love and support all of you send to me. I also want to acknowledge Betty, my transplant coordinator, for letting the cat out of the bag. Thank you Sean w/ love Tom.
I'm increasing better each day, "waiting for the other shoe to drop" as the doctors say in their best clinical vernacular. I haven't reached my nadir , or low point, so I won't be producing new blood cells. They say 4 weeks, which is approximately how long I'll be without an immune system. My Hickman port is healing. It looks more a knife wound than a piece of shrapnel buried in chest. The doctors are pleased, for whatever that,s worth. It's not always clear what makes them happy from their expression. My brother and sister received their respective donor kits. We anxiously await those results. Even though either one of them would provide a better match, it's a long shot. Jenel reports the donor drive in Wilmington flourished and exceeded all expectations. As an unwitting representative, I thank those who participated.
Jenel created a Facebook account for me, I'm still a little reticent to contribute to it. I appreciate those who do. I'm still navigating email and the diversionary potential of the Internet. It's starting to make sense to me and I have plenty of time coming up.
Again, I appreciate all the cards and emails, more than I can describe. We never close here and there's always someone here to receive your calls: 919 966-2190 rm# 6223. Skype is also available for those technocrats out there, you know Oprah uses it and it's free! And, of course, visiting hours are by appointment only ( due to overwhelming demand). Be advised: no children and shoes are required. By the way, I started writing random thoughts about my experience here, just after my second round of chemo. The prospective is a little dark, at times intimate, and perhaps self indulgent. The catharsis proved to therapeutic. I hope they're insightful.
Friday, February 20, 2009
So much has happened since my last correspondence. Continuity is a bit of a challenge after my second round of chemo. My reality is more schizophrenic. At once hovering in rambunctious anxiety or free falling into mind numbing oblivion, that I'm content to remain. Oblivion, however was only one of the stops along the sinewy umbilicus I'm connected to; inexorably pumping toxic elixir into my jugular. I have this apparatus filled with pharmaceutical alchemy suspended overhead in small teet-like bags. Persistently monitored mechanically, almost noiselessly. Sentry like, always by my side, without the maternal empathy and comfort you yearn for, only steely equanimity... Forgive the irrepressible self-indulgence. It's what you do with free time... that, or Oprah!
There is much activity though. Procedures are administered with redundant ceremony and clock-like regularity. It's very difficult to sleep without drugs. Drug and patient are confirmed with the exchange of proprietary information. all of which fits on a small card attached to your wrist. For the most part your person is rather superfluous, you become an observe while many functions are carried out without me; in the hospital, check your dignity at the door. I tried clinging to my vanity as best I could. It's all I have, really. But, alas, I relinquished that too...one hair at a time... then one handful at a time. Until, although defiant to the end, I had Jenel shave it off. New identity; Tom Jackson: cancer patient. Until then, I hadn't really felt that way.
I'm essentially incarcerated in prophylactic neutropenia. The door to my room incongruously protects me from a virulent river of bacteria and infection, that apparently flows just outside my door. It's hard to reconcile these inconsistencies whose ambiguities only codify my bewilderment. Here, they call that chemo brain, the consequence of which is drug induced forgetfulness and confusion. A little too glib an explanation, I think it's more neurological, but no one's talking.
My new friend, Carmac McCarthy so succinctly writes " you forget what you want to remember and remember what you want to forget". I started reading McCarthy's "The Road" in a morbid effort to define some context for my circumstances against his apocalyptic survival story I thought would be worse. It was a respite that was only temporary, I'm afraid.
Thoughts remain remote and unclear, scattered about like so much clutter you don't care to organize anymore. Survival is sacrosanct and irrepressible, nevertheless. The instinct for self preservation, the vestige of some primordial chromosomal mandate, compels me to horde sugar packets and little wrapped butter cubes. I've accumulated all manner of things I don't really need; gum and candies, tic-tacs and such, that many of you have sent me, which I appreciate of course, but I'll never eat them. I save them though, just in case. There might be a commerce angle, certainly bribery; the nurses love sweets.
When I described my condition to my sister over the phone she quipped, " It kinda like the human experience without the chemotherapy", It's universal. When you've reached a certain age and realize your many limitations. I feel like I know what 85 feels like, except with the immune system of a newborn. I've been reassured that eventually I'll be transformed to some alternate reality, perhaps transcendent and strengthened by this experience. It's too soon to speculate.
I am certain of one thing. I'll never convey my appreciation all the cards and emails, phone calls and visits from so many of you, who have rolled up their emotional sleeves to keep me elevated. Where to be to survive this, I think. There aren't enough words in my arsenal to describe my love and gratitude, thank you.
There are a few other people I must acknowledge. We have the doctors, of course, we refer to them collectively as the "gaggle". They awkwardly file into my room every morning, strangely quite and austere in manner, rarely harbingers of good news. "We're just waiting for the other shoe to drop", observes the attending physician(their leader), followed by a turrets like exclamation that reverberates down the halls; he enjoys his favorite observation and he emphasizes his perceived cleverness with a maniacal laugh, as if everyone understood, telepathically, whatever he heard in his head. The same questions and few answers beyond generalities relative to models that don't always apply to me. It's the context for the practice of medicine, it's frustrating and tedious and we all know it's experimental. There are doctors that have proven to be human, actually. They become your liaison to the gaggle, but all to abruptly, they're rotated out of circulation, as everyone is eventually, in a teaching hospital.
The nurses are the real care givers. Their wisdom and abundant experience is enlightening, and with enlightenment comes advocacy. To be an advocate, you have to participate as I see it, otherwise, things are done by rote, oftentimes, without regard for the patient. Sometimes a nurse will forget the humanity their employed to preserve, infrequently they need to be reminded and only gently so. For the most part, the nurses' vigilant dedication is unwavering.
Uncertainty is absolute here. It is the absoluteness you must embrace, or all your left with is the bittersweet confection of hope. Well, it melts in your hand. Hope is the currency of gamblers and fools. It's what Jenel an I bandy about with irreverent derision, like so much anecdotal fodder. You know Murphy's Law and all that. Be careful what you hope for. That's not just cynicism, it's the new paradigm in a world of disappointment, where the best strategy is accepting that things don't always the way you want or according to plan, at least not one I'm aware of. That's not to say that I'm not optimistic, intransigence won't allow me to be content for very long, if circumstances aren't going my way. Ironically that's the definition of delusional. It's not enough to hope you'll get well, you do the work it takes to get well emotionally, psychologically and as much as your capable, physically, It's a commitment and I'm really not that strong, I admit, at least not as strong as you give me credit for.
Jenel and others have reached down and pulled me out of what is alternatingly defeatist and nihilistic self pity. Jenel's stalwart vigilance and uncompromising care and dedication transcends love, at least none that I thought that I would ever know or imagine. You only think you know what love is until it's challenged. Some battles anneal the armor of love and redefines its intensity, its durability, portends its longevity... forever and ever.Love inspired poetic revelry, it's good catharsis, a therapy in which, perhaps we should all indulge.
...Different day, different vibe. Unhooked at last! Free after 5 days of inconsolable inertia. A complete reconfiguration of reality has occurred, where none of the blood in body belongs to me. My taste buds are so unreliable, the most comforting food becomes detestable and food I couldn't previously endure becomes ambrosia-like confection and as necessary as the new blood they infuse with every few days. My palate only cooperates in the extremes; salty or sweet without the nuance of flavor. The intrinsic nature of taste and smell converge only as part of some cruel joke, it seems. I craved anything I thought wouldn't make me sick. Hunger was a riddle I needed to to decipher every day while chemo assiduously scoured the inside of my stomach with roto-rooter precision. Nausea revolved with clock like inevitability 3 times a day; hospital time 7:00am, 12:00, and 5:00pm. It's a daily struggle played out in surreal hallucination, where cardboard and cigarette smoke are some of the flavors. And by the way, I thought you had to be 65 and over to eat at 5:00...
Tuesday, February 10, 2009
To those of you who visited me this past weekend, thanks so much. My spirit soared all day aloft a tempest of joviality and laughter. We were at times raucous and irreverent, uncomfortably loud , fueled by cookies and sweets until, and just for a little while, I felt I had been transported somewhere else. Sunday I crashed in glorious exhaustion, the depths of which only comes when you have an incredible time.A combination of Jenel's saintly care and alternative sources for lunch and dinner I had recuperated by Monday. My hair finally started to fall out. I was reluctant to embrace the inevitable, but Jenel and all the nurses convinced me to shave my head. Jenel had a little fun with it as you can see the photos we sent. So far the consensus is positive. I'm not so sure. Time to move on; not much I can do about it.
Today is an auspicious day. It's Tuesday; time for my day 14 bone marrow biopsy. For those of you who are unfamiliar with this procedure let me tell you. Essentially, the doctor (a fellow- specialist in the field) inserts an instrument similar to a tire repair tool and plunges it into the backside of my pelvis with the same force required to penetrate a truck tire. This instrument is hallow and once in place another instrument is inserted to retrieve a core sample of my bone marrow. The only reason this all works is because a sufficient amount of morphine and ativan are administered before he starts. Interestingly, I was fairly lucid throughout the procedure. But when it was all over I was gone for about an hour.
I should get the results from the biopsy by tomorrow. The results will indicate 4 different possibilities, none of which we'll go into right now. Jenel and I try to maintain equanimity about these things so as not to concede our tenuous optimism. When we receive the results and it's corresponding prognosis we will follow with another update. Jenel and I want to thank all of you with all our hearts for the notes and cards, the calls and goodies. I look forward to your generous thoughts and ebullient spirit every day. By the way, I'm bald now but I really haven't changed that much. If anyone needs to ventilate any madness going on in your world; do tell. Whining could be good for both of us.
Wednesday, February 4, 2009
I have a two car garage that has been so packed full of crap for five years you could barely walk in there. I finally cleaned it out this summer(it three weekends), and set up a ping pong table in there. Which reminded me endlessly of your and Mar's house in Santa Monica and all the ping pong we played in the garage. those were good times, simpler times.Zack was born, Liza and I coupled up in that stretch of time. Good things both.
When Marla wrote me a week ago about your diagnosis, I wrote there are a few people I know who could handle this beter than you . Whenever I saw you faced with adversity --from someone you to fire at Chicago Pizza Works , to when Zack had a cold as a baby and Marla couldn't handle that suction thing for his nose , to when you couldn't find matching wood for the floor at my house in Santa Monica, big or small, signicant or mundane , my picture of you in those moments is always with a smile on your face. I think you understood way before I did that this is the stuff that makes us who we are.
The requisite cancer success story. My sister Cathy was diagnosed with a cancerous brain tumor on halloween '07. Before they could remove the tumor, they discovered lung cancer as well, and gave her six to twelve months. She said to me, "they don't know everything". The lung tumor was too big for surgery they said. She had brain surgery, had no brain damage, a clean tumor removal and was up and laughing two hours after surgery. "That wasn't bad", she said to me.All the doctors were amazed by her recovery. Radiation on the brain, and two rounds of chemo for the lungs followed. She had an unbelieveably upbeat attitude and outlook through everything. It was that attitude, and recovery that convinced the doctors to change their minds, and go in and surgically remove the lung tumor. A day before the lung surgery they discovered colon cancer. A week after the lung surgery, they removed eighteen inches of her colon. Then another round of chemo. 9months after the process began, the doctors told her she was cancer free. A year after the first diagnosis, she returned to work, and is now dating her nuerosurgeon. Before the first she said to me, you know it's been awhile... what if he wants to...I said Cath, he had his hands in your brain, it doesn't get more intimate than that, let him do whatever he wants. She has a 60% chance of it returning,but most of us walk around with odds that aren't much better than that.
In the middle of all that, I had a good friend from New York send me a Sloan Kettering study. Sloan is the big cancer hospital in NYC, and the top oncologists there had been quoting what percentage of ccancer survival was due to attitude to their patients---but just making it up. Some said 15%, some said 20%, some said 25%. A new chief came in said, hey, we're Sloan Kettering, we can't just be making this stuff up. So they did a 7 year study on the role the patients attitude plays in cancer survival. Turns out they were all lying. It's 35%.
You have always had that positive attitude, which is just who you are naturally, and I know that will serve you, and those around you, well. It's my experience in life that in the end, the good guys always win. It's also my experience that you are a nuice guy.
This a.m. the gaggle told me I was the least sick person on this floor ( amongst the cancer patients), but they still won't let me leave. Yesterday was my last day of chemo, but I understand the fun doesn't stop there. For now, I take whatever pleasures come my way. The door prize for chemo completion is I.V. disconnect. Untethered, unhooked, free to roam about as far as I can go in an hour and get back. That's right, there's a catch. You can't go very far or for very long, otherwise they put an APB out for you. Some insurance thing, I suppose.
For all intents and purposes, I feel pretty good. If it weren't for the plum colored, golfball sized hematoma above my clavicle and the plastic dredlocks coming out of my chest, you wouldn't know I was sick. There are less obvious side effects, but I don't know a lot of you well enough to talk about them. Now that I've completed chemo, we wait for my blood values to fall. When they get too low, they infuse more blood or platelets as needed, to bring them back up. I know, the myth of Sisyphus comes to mind.
The hardest part of this, recently, is finding food that doesn't make me nauseous. The choices aren't very auspicious. Hospital food is every bit as bad as you've heard. But, somehow I've found some item or combination of things that have given me sustenance Sweets, apparently, I can eat in abundance, but that too has side effects ( graphics deleted) in the end. There are a few things as of yet that bring me down. I'm grateful for all your cards and emails ( I love cards) that imbue strength and determination. I look forward to them everyday. Finally, I must say, that without my wife's help, I wouldn't get through this. I'm eternally grateful, ...forever and ever. Love Tom.