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 ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   tue apr 1      round 4 day 2 going into this round, i have felt better than i can remember feeling in a long time. my energy was up, my health seemed good, my spirits were good. yesterday i went in and started the fourth and final round. things got off to a smooth start: they found a vein easily and painlessly, and my white blood cell counts were high enough to permit us to start in. these are all answers to prayer. friday, i'll receive the final shoot; the next week, i'll hit bottom as the chemicals take greater effect; the next week, i'll begin to recover; and then that should be it, folks. no april fool. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   wed apr 2      round 4 day 3 everything seems to be going according to plan. as of yesterday, i have arranged for 10 weekly doses of procrit, which is the relatively new medication that boosts your red cell count in the same way that neupogen boosts your white cells. so, the official ending date, i suppose, is 10 weeks from now. in the meantime, i'm beginning to feel slowly submerged by the chemo. just this last once! ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   thur apr 3      round 4 day 4 this is the next to the last day of receiving chemo. so far things have gone really well. i guess that eliminating the bleomycin has really made a huge difference, even as small a dose as it was. what a powerful drug! just 7 shots of it, spaced at once a week, has caused lung damage that won't go away for an entire year! no wonder it was pushing me under the line so much. the last round and this one — so far — seem to be much lighter on me, and that's something else to be thankful for. and i don't say often enough how much the notes and cards and words of prayer and support really do mean to me. it's made all the difference. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   fri apr 4      last day ...that is, the last day to get chemo injected into me. although chemo is really tough on the veins, stripping them and ripping them up with their abrasive qualities, especially at the point of entry, i've been fortunate so far to need a minimum of re-stickings. they just keep a semi-permanent plastic deal inserted into my arm all week, and re-use it every day — that is, unless the vein is too damaged and they can't get it to work, in which case they have to find another vein. so, let's hope that on this last day all will go well. part of what made this go as well as it has so far is the excellent university health care system. i simply can't imagine getting better care anywhere. my main doctor, gopal kunta, couldn't have been better. he was on top of the information the whole way along, and was incredibly solicitous, not minding when i called him on vacation or at 4 am, always holding out for the safest and best course for my health. special thanks to the nurses: marilyn, darren, eli, jill, jim, and diane. they've consistently gone above and beyond the call of duty. every last one of them, it is obvious, feels a real calling to do what they do, and, as they deal so often with patients who have little hope at all, i'm sure it takes its toll on them. thanks especially to my parents, and to catherine, all three of whom often accompanied me through these days of chemotherapy — a commitment of three months, an entire quarter-year — as well as shuttling me back and forth not only to the hospital but to waco in february, as did amy claire kingston and leah graham, good friends who drove 6 hour days just so that i could go and rehearse and perform at baylor. and, thanks to you as well, for caring enough about me to be reading this, and adding your prayers and well-wishes to the mix. not many people can say this, but since january 2nd, the day of my orchiectomy operation, the sun has not set on my support group. people scattered across the united states, south america, mexico, japan, india, china, turkey, england, and no telling where else have been lifting me up in their own ways through prayer and meditation and good vibes. that's been a big big part of how well i've been doing, i believe. as a friend says, we don't know how prayer works, but it works. i'll enjoy going through the stack of those yellow cards that let me know i've been prayed for by my friends in the prayer room at my church, as well as reveling in the flood of emails and cards from all over. we're not quite out of the water yet. i'll keep updating this page for a while. but i didn't want to let another day go by without these words of gratitude. thanks again. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   sun apr 6      last tunnel i'm beginning to feel more and more submerged in the drugs. it's like looking out a dirty window. deep inside i'm conscious and feel like i should be feeling great, but there's just this huge physical obstacle. what to look for this week: i'll get more and more down till about thursday or friday, then by the beginning of next week i'll start heading back up the ladder to recovery. in the meantime, all the fatigue, nausea, breathing problems, hiccupping, burping, gastric problems, colon issues, and all the rest simply serve to say that the chemo is working, killing off not only good cells but the final remaining tumorous ones. for that we can be grateful. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   mon apr 7      stable last night i spent a few hours over at mom's and dad's house, celebrating dad's birthday. it was a nice sedate ending to a weekend that was just a little bit full considering my condition. so far, i think i've been pretty good about following the advice to do more than you think you should, and rest more than you think you should. that's how to create the healthy balance. so, now i'm thinking about my re-emergence into normal life. as anyone who's traveled will tell you, it's coming back that's weirder than going away. when this whole thing started, i just got plunged into it right off — the schedule was set, the medicines were chosen, i just had to show up. getting back into normal life (and some revenue), it's all going to be on me. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   tue apr 8      more of the same the frustrating thing is only getting to do pretty much one thing every day. yesterday, i loafed, ate, and took medicine, then went to a movie with catherine. today, i'll loaf, eat, take medicine, and go play a CD at a radio station (it's the protagonists jazz party on 91.7 — tune in or listen in on the web!), and that's it. i just keep looking forward to the day, not too distant now, when life is again possible at a normal pace. for now, frustrating as it is for family, friends, girlfriend, and self, it's baby steps. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   wed apr 9      feast why did i eat so much tuesday? usually, i haven't been all that hungry; compounded with that, i've conscientiously followed the diet advice in the cancer guides about how you should eat healthy stuff and eliminate snacks and have lots of grain and no sweets, with the effect that i've gotten used to a bit less food and at more regular hours. yesterday, though, i just didn't stop eating. little snacky stuff, big meals, a couple of giant plates of spaghetti, broiled fish with carrots, chips, yogurt.... it never ended. what does it mean? maybe i'm overcorrecting to my old healthy appetite, or maybe i just got sick of being a monk. weird. just a couple more weeks to go till the final (for now) tests and scans. can't wait. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   fri apr 11      pain yesterday i woke up in pain such as i hadn't had since the last time this happened. yep, it's the neupogen, wresting cells from my bones. i got up only to take pain pills, and then stayed in bed literally all day. when i woke up intermittently, my fingers were numb — a chemo symptom i'd been warned against but had never encountered. finally, yesterday evening, when i hauled myself up, i got a nosebleed. this morning is little different. no nosebleed, but the numbness is there and the pain is there, though well under the control of those wonderful pain pills. darn it! why can't this end peacefully? pray for an eventless weekend. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   tue apr 15      waiting looking back, i see i was a bit impatient. thursday and friday were slated to be down days. that's how it's happened every round, and this round was no different. i started getting a little better saturday — even well enough to go to a really nice party for a couple of hours — and stayed that way through the weekend. the past couple of days i've been full of busy intentions but have just wound up mainly sleeping and eating, with intermittent reading. i guess that's what my body has demanded. i took my last neupogen shot this last friday, and saturday took my second procrit. 2 down, 8 to go. sometime today i'm going to call the doctor and ask when it's ok to have something fresh. remember that since january i haven't had any raw fruits or vegetables — but surely one day soon i'll be able to bite into an apple or tear into an orange, or order an unmodified sandwich from schlotszky's. the upward slope begins. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   fri apr18      good each day i feel just a little bit better. we're nearing the end of the round here — if there were a fifth round, it would start monday, but there *isn't*! yeah! this easter weekend i'm travelling to houston to do a seder and an easter celebration with catherine's family. one of the main things i look forward to is everyone not asking how i am, wall to wall. (heh, not that i don't appreciate the caring, but, as anyone who's been through this will tell you, it can be a drain.) i went in for blood draining today. they took out a few test tubes worth, and they'll be labbing and microscoping and cocktailing so that when i go in tuesday they'll know what they're talking about. tuesday is the first verdict: the doc will tell me what the tumor markers in my blood say. already, as of the last test, they were smashing. we expect to hear that no signs of cancer are left at all. then, in a few weeks, i'll have a cat scan and we'll get the second and final-for-now verdict. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   mon apr 21      beginning this weekend was tiring but fun. i went with catherine's family to houston for the weekend, which included a passover seder, an adult easter egg hunt (with my loss of competitive edge and frequent breaks, i got 6 eggs...pathetic!), and a jazz easter service at the gorgeous trinity episcopal in houston (a dear friend was in charge of the music). today is an important day for me: if there had been another round of chemo, it would have started today. that means that i've never been this far from chemo since the thing started. i've always reached the point of beginning to get better only to get knocked down again, but this time there's no knocking down. i just get better and better. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   tue apr 22 - evening      first verdict went to the doctor today, and got the news about my blood tests. all blood levels are normal, with the exception of the hemoglobin, which is pretty low. that's to be expected, and it's why i'm taking procrit for ten weeks. (and that's why i get so tired so easily.) but the blood tests show no signs of tumors at all. that's cause for celebration! my bone marrow is still recovering. it was damaged severely by the cisplatin, but we pray that it will recover in a reasonable length of time or there will be a biopsy of it. the slight hearing problem caused by the cisplatin will clear up over the next few weeks, i hope: i'm tired of everything sounding so harsh and tinny. the shortness of breath, caused by the bleomycin, will clear up over the next several months, and will be completely gone in a year. my kidneys have been affected by the cisplatin, but time and drinking water will take care of that. next on the agenda: a chest and abdominal CT scan and a pulmonary function test (being sure the bleo left no residual damage) before the next doctor visit, in a month. that's when we confirm that indeed no tumors are left. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   thu apr 24      life i'm gradually getting back toward a normal life now — have started talking about doing gigs again, and this sunday i'm doing some music at church. not sure if they still do webcasts of the services, but it might be worth checking out. after going to the bathroom and coming back and plopping down, out of breath, i had to smile when catherine took my pulse and said, "wow, you *aren't* faking it after all!" nope, that low hemoglobin is going to take a couple of months. nonetheless, i do have more energy these days. how nice, that this is beginning to be over with. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   wed apr 30      till may 20th this will be my last post for a while. please keep praying for me and keep me in mind — it's not over yet. the next step takes place on may 20th, when i'll have a lung test and a cat scan. we fully expect the scan to show nary a sign of tumor: the blood tests have already indicated that, and the scan is just a make-sure measure. but the lung test will be of interest, because the effects of the bleo-induced pneumonitis are expected to last a year or so. i still get out of breath.... i can't even yawn properly! some have asked for pictures of me in my chemo baldness. enjoy. see you on the 20th. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   sun june 1      hoorayish went to the doctor this week to get the results of the tests that were done on the 20th. the pulmonary function test went extremely well — i'm in the normal range. the pain, though, should last for a while and taper off over the next year or so. the blood tests, again, showed no sign of tumor activity, and that's an important thing, especially in light of the other results. first, the site of the largest erstwhile tumor (2 cm), a lymph node, is now at 1cm, which is much thicker than usual. we think, though, it's just tissue left over, like a woman's belly after pregnancy. if that's the case, we expect it to gradually go down some. in any case, i'm seeing the original doctor, ian thompson, for further inquiry. there's a remote chance he'll want to get rid of that enlarged node surgically, just in case there's something bad there. please, no! then, there's the spot on my lung. it's still there, and still the same size, accompanied by two other spots that they didn't see previously (which doesn't necessarily mean they weren't there). the chances are 99% that those spots are nothing to worry about and are unrelated to the cancer. of course, the chances are 99% that you can't quote extended passages of shakespeare at the age of 14, and i was in the one percent on *that*. so. we'll keep an eye on them, and do another cat scan in a few months. if they're dwindled or gone, good. if they're still there, we'll possibly go in and do a biopsy. please, no! even if the biopsy turns out to show that they're not cancer, it would still be a drag. more of a drag would be if it shows that they *are* cancer. anyway, it's all stuff to keep in prayer. does this ever end? nope. as a friend pointed out, this is where most people live, and this is where faith kicks in. so, you're invited to join me in attending the church of 99% certainty. services are already in session. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   mon june 16      patient again friday evening i noticed a pain in my side. probably a stitch, i thought. i'd just been walking a long while. but then i couldn't get to sleep because it hurt so much. and it was right in the place where the appendix is. at around 4 am, i thought, 'crap. better go to the emergency room and check it out.' sure enough. after a long long day of mostly lying around in pain, the verdict came that it was appendicitis, and surgery was next on my agenda. i told the dr that we should schedule it for sunday afternoon because i had a gig that night and duties in church sunday morning. she laughed. haha, she said, if i let you leave this building i'd lose my license. so i made calls to family and to gig and to church people, and went in and had my appendix out. i now have three holes in my abdomen (not to mention the giant slice from january). i'm at mom's and dad's house for a few days. last night i had to sleep in a chair because lying down on my back in a bed was so painful that i cried out in agony — dad raced up the stairs in alarm. happy father's day. i'll be fine; i can't lift anything for five weeks, but the recovery on this is expected to be no problem. still, one can't help thinking, what next? ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   mon june 30      on the fence went to the urologist, dr thompson, yesterday. the results of the latest cat scan show that there's still a mass there, where the largest mass was to start with, on a lymph node near the aorta. chances are it's not a malignant tumor, and that it's just maybe scar tissue or something. it's one cm in diameter. what to do about it? one option is to watch and wait; the other is to do yet another surgery and get the thing out. the benefit of watching is that there's no surgery, and if it *is* malignant we'll probably (probably) catch it in time. the benefit of surgery is that the thing gets taken out and that's that. if it's then tested and found benign, then good — we know it's benign; if it's found malignant, then it's out, and all that's left is another mini-round or two of pleasurable chemotherapy. (with the watching strategy, if it shows evil intentions we do chemo.) so. the doc said that his professional opinion is he could go either way. a reasonable person could come to either conclusion. i'll be considering this over the next few days, and i ask you to once again pray with me. (and don't forget those enigmatic spots on my lung.) ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   sat july 12      decided i've come to the decision that i don't want surgery just now. it really is an invasive thing, and may not be necessary. instead, we'll watch the mass in my trunk and the spots on my lung. if they start doing bad stuff, we'll do more chemo. please, no. but they probably won't. there's a large chance that i'll just live with this mass of (most likely) scar tissue the rest of my life. i do have an increased chance of certain types of cancer because of the etoposide, but that's the price of admission. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   mon aug 25      denouement life is getting back to normal these days. my hair is coming back in, very wavy. strange! and it's still incredibly soft. after falling out and then not growing at all for several months, when it comes in it's baby hair, very fine and fluffy to the touch. thanks again and again to everyone for your prayers, well-wishes, good vibes, and support. i hope you never have to find out firsthand how much it means. one question i'm asked is whether this cancer has changed me in any way. i don't think it has; i feel like the same person i was before. it's just that i've gone through this crappy and uplifting experience. catherine says i'm less 'wrapped up in myself' now, so maybe this ordeal has shifted my perspective to be more outward. i recently saw an old friend who mentioned that i didn't seem like the type to go through life wearing my cancer-survivor status as an identity. and i think that's probably right. it has forever changed my eyes: i can spot a cancer person a mile away now, and have some idea what they're going through. but i actually look forward to being just me again. folks at church knit their brow and ask, "how *are* you?" less and less often these days. even while i was in the depths of the chemo, i occasionally would emerge to play a gig or half-gig, and i was really refreshed to think that people didn't see me as cancer-barry, but just as a particularly (or typically?) worn-looking jazz musician. they had no idea what was happening in my body at that moment, and i was sort of glad. it's nice to be anonymous that way. but it's also nice to be the recipient of such care. people i didn't even know would pass me at church and say, "we're praying for you every day." i'd get random emails from not-very-close friends who were deeply touched and concerned, and expressed lavish support. i now see those people in a totally different light, having seen their previously unshared depth. so. i'm writing some songs, doing some recording, playing gigs, teaching sunday school, inventing meals to cook, building a new big-enough bookcase. onward.