120 days in the valley.

tc-cancer.com :: tc resource center :: a word to the guys (& their gals)

 

go east. my month in beijing fast hannah. a preliminary bit of blizz blazz mad skills. bbbbarry thRoWz U sOmE dEeP hOuSe nineveh. a painting i painted the defense rests. an original art work celebrates my dad's career

::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   :: jan | feb | mar | apr ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   sat mar 1      pain friday morning, i had an ache that was so bad in my lower back that i called the doctor to prescribe a pain pill. we think it's the effects of that neupogen shot, causing the manufacture of white blood cells in my bone marrow and thus making some of the larger bones ache. the pills brought temporary relief, but by this morning i was in such pain (more even than january's surgery had caused) i needed something stronger, which we got pronto. it occurred to me that it's only been within the last 100 or so years that a person, whether washerwoman or countess, didn't have to deal with incredible levels of pain on a regular basis. maybe the most significant medical accomplishment of the first world in the twentieth century is the management of pain. a word about the pit: in preparing for this waco deal, we had no idea what my anc would be, so we had to prepare for the worst. i brought up masks — some for me and some for anyone in the pit to use if they had a cold or sniffles or *anything*. i also brought up a thing of what looks like deadly baby-wipes. it's in a similar dispenser, but the towelettes are superantiseptic and quite stinky. you wipe everything in the area down (in this case, keyboards, amps, tables, piano, cords), and it's supposed to get rid of everything including tuberculosis, HIV, and bubonic plague. yeesh! so, we wiped down the pit, and i brought along one of those trendy but usually useless things of antibacterial semi-soap that everyone seems to have. on a regular basis i and jason (who had the most traffic with each other) freshened up our hands. it smelled like a lavender wonderland down there. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   sun mar 2      i'm back my parents and i had gone together to waco for the weekend, just in case they were needed for an emergency. it turns out that i was able to play every show, thursday, friday, and saturday, without incident. so it just turned into a nice weekend for all of us. how nice it is to write those words! on the way out of town we ate at a new greek restaurant. for whatever reason, that meal drummed into me a new awareness of my condition. it was frustrating just to look at the menu, because just about everything had some sort of raw vegetable ingredient that made it inedible for me. after some sallying (as in 'when harry met'), i got a rather pitiful looking plate of potato things. then, immediately, before the first bite, i had to run to the restroom to yakk into the toilet. as we left the restaurant, i got a glimpse of myself in the darkened window, and realized how horrid i look. i look like a cancer patient in the depths of chemotherapy, which is what i am. inside, there had been a couple of pitying looks: i'm sure the other customers thought i was dying. but the eye-crossing pain of friday and saturday is apparently over with, and i'm back home from a successful trip to baylor. i'd said that last week's success would be because of my willpower, and this week's success, if any, would be because of god's will. once again, we didn't even dare to pray for something as good as the actual result: a white-cell count that would not only be above neutropenia, but would allow me to function more or less normally. i suppose god knew this trip was important to make on many levels, and sped me on the way more easily than i could have hoped. several of the people i worked with at baylor mentioned that they were praying for me diligently; some of them were people i'd never met but whom i ran into once or twice. this is one of the overwhelming parts of the experience: people who have very little connection with me caring enough about my life to send prayers for my well-being. total distance traveled in 2 weeks: 1400 miles. was i nuts? ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   wed mar 5      crisis over had a long hard day yesterday. sorry i didn't update for you! monday was a day of nothing but rest for me. i noticed that my neck was stiff and hurting, and that my right knee was acting up in exactly the same way my left knee did three weeks ago. tuesday, i went to get the bleo, and then straight to the doctor, who saw all those things and decided the neck issue wasn't lymph as we had feared, but rather swollen saliva glands reacting to my couple of weeks of runny nose and drip. he took blood and x-rays, and sent me on my way but by that time it was early evening and i was miserable: aching and chilling with fever. i went home and crashed out and pretty much stayed out till this morning. the good news is that i'm no longer miserable. the extreme pain in knee and neck is subsided to mere irritation, and the fever is down to within a degree of normal. further good news is that my tumor markers (as measured in blood samples) are low: all of them are either normal or within easy striking distance of normal. excellent! and only one more round of chemo to go. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   fri mar 7      uphill that means that i feel like i've come a bit uphill in the past few days. my appetite is normal, my energy level is higher — without any pills — i feel like a somewhat regular guy again. i even rearranged my living room. monday begins the third round. till then, i'm going to learn my lesson and take it very easy, while still getting out there and living some. what a good time for lent to have started! wednesday evening, with ash freshly smeared on my head, i pondered the original purpose of the next 40 days: penitence and fasting, punishing the body for the eventual good of the soul. my condition brings a whole new dimension to that idea: do i have the imagination to look at nine straight weeks of chemo, with no weeks off, as a time of severe mercy, devastating cure, healing by hyssop? ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   sat mar 8      healing i'll spend most of today doing some sound editing for an interesting project: dr peggy avent's healing connection cd. she commissioned me to write the music that will go along with what she calls "prayer therapy," a guided visualization technique that takes people through the healing process. little did i know i'd become a customer, too; late last year when i got started on it i had no idea that i would become cancerous and enter the target market for this product. so, as i've composed and edited it, i've been using it as well. funny how things work out. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   sun mar 9      family today i worship with my church family for the first sunday in several weeks. i'm really looking forward to the community and spirit there. many, many of those people have been lifting me up in prayer day in and day out for months now. what a humbling thrill, to know that people care about you that much! and the prayers have come true in spades. thanks. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   mon mar 10      afternoon just got back from a long day of chemo; things went pretty well. they had a hard time finding a vein that worked, but part of that was my own skittishness. far from being more and more comfortable with getting poked, my body now squirms and resists: it knows what's coming. i do have mixed feelings about this last round. at times i say, "wow, it's the last round! 3 weeks from now it's over!" but then at times i say, "i can't believe i have to go through another 3 weeks of this." most of the time, i feel both things at once, and, overarching that, gratitude that i've been gifted with this type of cancer that's so treatable and so curable. i really do expect (given that i'm in the 80 percent rather than the 20) to go back to somewhat normal life, and that's a blessing. so. a mountain to climb. here we go. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   tue mar 11      chemo 3 day2 when i go into the oncology outpatient ward, i go get my blue card from blanca: that has the raised letters and numbers that the nurses will use to ka-chink all my documents like an old-fashioned credit card ka-chinker. then i go in and get weighed, temperatured, and blood-pressured, and the nurses put in the order for the lab folks to concoct today's chemo. most of the time, i'm in the second chemo room, away from the desks and phones. this is because i'm one of the very few people who are accompanied every day, by some combination of girlfriend and parents — sometimes all three. the nurse comes in and hooks into the semi-permanent port that was poked into my wrist at the beginning of this round, and begins pumping saline into me to get plenty of fluid flowing around (remember the cisplatin can wreck your kidney). an hour or so later the chemo arrives, in three packages: first, a steroidal anti-nausea bag about the size of a ziplock sandwich bag; then, the etopocide, about half a liter; then the cisplatin, about 3/4 of a liter. there are physical and legal limits to the speed they can pump. the whole process takes about 5 hours, all depending. i go in around 8ish and am out around 2. today may be a little bit longer because it's bleo tuesday — an extra ten minutes or so, and a blood lab in the early part of the morning. by late in the week i'm sleeping most of the time, but early in the week i often just close my eyes and meditate, trying to block out the jerry springer/judge show/soap opera that's inevitably on for the other patients. all the meditation and visualization techniques, especially the ones with a religious focus, tell you to picture yourself in a place in nature: forest, beach, shady grove, etc. but for some reason i've never been able to stay outside. i always come back to the same place, a place that i like because it involves human effort and human friends: a modified version of the grand chapel of the monastery at melk, austria, a place that has always pierced my heart. it's full of ornately done gold, high frescoed ceilings, and a gargantuan pipe organ. i picture myself standing or lying down right in front of the spectacular altar. and here's one of the modifications: the stupendous molded entablature that surrounds the room is replaced by a giant balcony, filled with the people all around the world who are loving and remembering and praying for me. sometimes in my mind i feel myself lifted up into that vault of space where the nave meets the dome, supported by the prayers and well-wishes of the friends and strangers who surround me. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   wed mar 12      pain spent an extra-long time in chemo yesterday, primarily because today they're going to (maybe) give me a blood transfusion in order to get rid of my fatigue and shortness of breath and all that. so, they did some poking in order to get type-tests before they start today. the problem is that the chemo has fried my veins so much — and made my body so uncooperative, pavlov-wise — that it was extremely difficult for them to find a vein that would even give blood. and on top of that, the process was torturous. at one point, the nurse was not only holding a giant needle in my arm, but actually twisting it back and forth. ouch! ouch, ouch, ouch! well, that's the joy of chemo. today's another day; i pray for less pain. i also pill for less pain: hopefully some good drugs will do the trick. can't believe i have only eighteen more days to go. let's get this over with. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   thur mar 13      emergency 4:45 am — i've been breathing shallowly and heavily all night, and just noticed fluid in my lungs. called the dr, and he said it's emergency room time. please be in prayer about this! the bleomycin does have major possible effects on my lungs. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   fri mar 14      what next yesterday was a long day. went into the emergency room with fluid on the lungs and breathing heavily; after several hours of testing and treatment they diagnosed me with officially just that. i had received tons of fluid because of the potential cisplatin kidney problem (you have to keep flushed), and on top of that had gotten 3 units of blood the day before. all that fluid, we think, just built up in an unnatural way. so, they drained it. they also did other tests to see if i had blood clots, infections, heart damage, or anything else — so far, in the clear. special thanks to nurses OJM and sandy, people who carried me through the day with professionalism and good humor. thanks also to ministers charlie johnson, johnny white, scott day, amy claire kingston, leah graham, and ashley fass, who came and visited and made my day a bit brighter. charlie and johnny gathered the family around and did an anointing-with-oil that was as good as any medicine. so. chemo was postponed one day. it's today and tomorrow, and then my two tuesdays after that, and that *should* do it. the end is near. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   sat mar 15      extra chemo day that's because i had to skip thursday. in the meantime, we've changed our mind on what exactly happened to put me in the emergency room. the current theory is that it was not the blood transfusions and fluid levels after all. after thoroughly examining my history of chest x-rays since the beginning of january, dr kunta has concluded that i have a rare reaction called bleomycin induced pneumonitis. we knew that bleo caused lung problems: here's one. because of the way it kills cells, it can cause lungs to swell with fluid, a condition that kills a small percentage of patients eventually. however, if it doesn't kill you, it will go away completely and won't be a permanent part of your health landscape. that's what we're praying for. in the meantime, things have changed. i'm not going to be receiving the final two doses of bleo this tue and next tue. what that means, possibly, is that after today's chemo, i'm done, and we watch and wait. what it more likely means, though, is that i have yet another round of etoposide and cisplatin, just to kill off any remaining tumor cells. with such a light reaction to the chemo so far, and such a quick course — ninety days — to begin with, how is it that i'm so ungrateful, so crushed at the possibility of another round? but it's not inevitable: the miracle prayer is that we'll somehow get the indication that all tumors are gone forever, and there'd be no need for further chemo. wouldn't that be nice. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   sun mar 16      waiting today i go into my usual second-week routine: the pills, the belly shots. the only difference is that i won't be getting my tuesday bleo. instead, i'll be going to the doctor to figure out what happens next. the million dollar question is, after 15 out of 15 treatments of E and P, and 7 out of 9 treatments of bleo, is there any situation where we'd say, looking at the blood tests and pictures, this thing is over with? or will that lingering doubt always propel us into yet another round? of course, what i'm hoping for is that there will be ringing, unmistakable indication that all cancer is gone. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   mon mar 17      tired entering the second week of a round is maddening: you want to get up and get around, but are too tired; you want to rest but are too restless. eventually, though, the fatigue takes over and you get into some sleep or slumber. this stage only lasts a little over a week or so while the chemicals continue to swirl around and do their work. so i'll be laying low. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   tue mar 18 - evening      bonus round the doctor confirmed everything bad and good today. as for the b.i.p., the rare and dire reaction to bleo, we're taking me off the final two treatments of bleo, and the effects — shortness of breath, fluidy lungs — should fade away strongly in a few months, more in 6 months, and pretty completely in a year. taking me off the bleo means i didn't complete my third round, though, and so a fourth, bleo-less, round is ordered. i didn't have anything today and i won't next week either: my tuesday bleo days will be empty, and we'll go in for an entire five-day, five-hour-a-day round of E and P the week after that. then we go into watching and waiting mode. what this means for my body is, naturally, good and bad. the bad is that i go through another round of chemo. the good is that without bleo, it'll be less volatile; each time i took bleo, something horrible happened that now won't happen. the bad is that, even without bleo, i'll get dogpiled by cell-killing stuff that brings fatigue and wipe-out. the good is that, after it's all over, the cancer will be very likely gone forever. so. prayers of thanks and concern, and forward we go. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   thur mar 20      stable i'm in the hunkering down stage now, something that i know is frustrating for family, friends, and girlfriend. most of my days are spent alone, just simply resting, as it should be. a bright spot: so far, the neupogen — the daily belly shots that grow white cells from my marrow — hasn't caused any real pain or aching as it has in treatments past. of course, we're only halfway through this round, but that at least is a relief. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   sun mar 23      pain last night that neupogen pain caught up with me: a throbbing pain in my lower backbone, same as last time. at least i was prepared for it. yesterday i was able to get out for just a little bit, and play a jazz gig. it was an early afternoon thing, for just a few hours, and it was just the right size and shape for me. it tired me out, but also refreshed me, and i was glad to have been able to do it. ah, for the days when i'll be able to do a *real* gig! soon. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   tue mar 25      better the neupogen pain has almost completely gone away, thank goodness. actually, yesterday, for the first day in a while, i really felt quite a bit better. looks like this week may be a week of feeling up for me. much needed. i go to the doctor today for tests and a routine consult. hopefully everything will be as planned, and we'll be on schedule for the final round starting next week. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   wed mar 26      restless i'm feeling more normal, as is usually the pattern at this stage of a round, but for some reason i'm restless. the past couple of nights i haven't slept much at all — only a few hours. what's the deal? i guess this is what happens when you're sick: the body can't get much exertion, and so isn't really tired, but the mind is fatigued. ah well. hoping for a more regular schedule. in the meantime, i'm so thankful for this third week in the round. it always picks me up. and this time, of course, there's no bleo to send things spiralling. so, when that fourth round comes, this monday, i'll hopefully be rested and in top shape and ready for the blow. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   thur mar 27      entropy it's the second law of thermodynamics in action: things fall apart. why are we always so surprised? it occurred to me recently that i could go through life never stubbing my toe and never notice. it would be considered perfectly 'normal' to never get a tumor, never have an x-ray, never be hospitalized, never have to get fluids poked into or drained out of you. you'd only notice in retrospect. ah, but life doesn't happen that way. fact is, you *will* stub your toe, and worse. it's an aspect of life on earth that's unavoidable. and, of course, at some point, your body will become a corpse, and your soul will encounter who knows what. it's in the future for every one of the 7 billion of us. for me, understanding the constant decay around us and its implications, seeing it clearly and acting with it in mind, is part of the very definition of a life well lived. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   fri mar 28      carpe diem i'm enjoying the last few days of the third round, the days that are built in and designed to get my strength up and my counts up to near-normal before entering the fourth round monday. (we hope — there'll be testing beforehand just to make sure, but every indication is that things will be good.) i'll be resting up today in order to play a last-minute gig tonight on the riverwalk. come on out and enjoy the jazz. then tomorrow it's some studio work and a long-postponed dinner with catherine. sunday is church, for the first time in a few weeks. then, monday, it all starts over again. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   :: jan | feb | mar | apr