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 ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   sun feb 2      round one over can't believe it's been an entire round (sort of) — five days of straight chemo, five hours a day. pretty much a full-time job, this being a cancer patient. so far, things are going much smoother than i'd expected, although again they say that the worst is ahead. right now, i feel sick -- not anything specific, but just how you feel when you feel sick. i played a jazz date tonight; it was spiritually rejuvenating but at the same time pooped me out physically. i actually left early. but what fun, to be normal for a bit and just sit down and play. those people in that audience weren't seeing a cancer patient, as far as they knew — it was just a jazz musician, playing with a group. round one of the etop and cisplatin is over, but the bleo continues every tuesday. we shall see. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   mon feb 3      down yesterday was the first day i really really felt way down. for whatever reason, my body had a frustrating combination of restlessness and fatigue. when i sat down, i felt like i was sinking. when i was moving around, i felt dragged. yeesh. is this how it's going to be till late march?? please, no. a word about these chemicals that are doing their dire work. etoposide: it does good, but also interferes with growth of cells, especially in lungs and testicles. it can cause other cancers to occur later in life — skin, lung, etc., 20 or more years later. i had to sign a disclaimer on that one — and prayed for medical advances in future years. cisplatin is the platinum agent of choice in combination chemotherapy for this kind of cancer. the bone marrow is affected by this one: i'll be more susceptible to illness and other diseases, temporarily, because the white cell count goes down so drastically. (that's why i may eat only cooked food; no fresh fruits or veggies now.) this is one of the two (the other is bleo) that require a run to the ER in the case of certain symptoms that might occur. this one also causes major kidney problems, so i've been drinking huge amounts of distilled water. more about the third, bleo, tomorrow, because tuesdays are bleo days. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   tue feb 4      bleo 2 day still feeling fatigued but unbowed. we're going to beat this thing. in the meantime, today is the second treatment of bleo: the third ingredient in my deadly soup. bleomycin is an antibiotic which, while doing its cancer-melting, also interferes with the cycle of cell growth. it can cause sweats and chills and is associated with lung problems (shortness of breath and coughing). last week, none of those things showed up, and we'll continue praying for mild reactions. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   wed feb 5      better feeling a bit more up today. got a great night's sleep last night, all things considered. on one of these websites, it mentions that this particular kind of tumor is congenital. we could have caught it early, but nothing could technically have prevented it from happening. it was just sitting there cocked and loaded, ready to go off all my life. this brings a new meaning to the 139th psalm, doesn't it? this cancer was knit into me in my mother's womb, and god was there the whole time, planning and preparing this very time in my life. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   thur feb 6      health i've been thinking about health lately, and the very word is related to "wholeness" and "healing." one of the many things i'm grateful for are friends who carry me through this like a sultan, on a bed of prayer and friendship. two days ago, one hundred men surrounded me at 7am and prayed over me. just last night, i ate a marvelous dinner at the home of dear friends, and we just sat around and enjoyed each other's company. these things are precious, aren't they? they sustain healing as surely as chemicals and medicines. i finished my fifth day of dexamethasone (hexadrol) yesterday. that's the steroid that counteracts some of the side effects, and gives me a bit of strength. so, we'll see how things go from here to the next round, a week and a half away. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   sat feb 8      better both my eyes are bloody red because i tried a new contact lens stuff. sheeshe! well, i guess it's back to the old. tomorrow, i go to this cancer support group that i've been to once before — it's a good group of people, small enough to actually talk and share, and some of whose needs put mine to shame. again and again, i feel lucky rather than unlucky in all this. so, i'm looking for a way to give and receive from these folks, and to prepare for the two months ahead. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   sun feb 9      entering 3rd week the chemo is in there and doing its job, presumably, at least the first round of it. meanwhile, i'm feeling groggy at times, just fine at times, pooped out much of the time, but in great spirits because, as i keep pointing out, i'd been prepared for so much worse. the past couple of nights i've ended early: cut off something good and fun and wonderful because i suddenly felt whacked. then i had to deal with questions like, am i just wimping out? is this just an excuse to pad back home and shuffle into bed? each time, i've realized that i'd much rather have stuck around and continued through the evening, but it was just quite simply time for me to go home and rest. the most frustrating thing about this illness could be that one doesn't want to do the things one ultimately wants to do. so, i'll pad around and get rest. but i'll pray for energy! ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   mon feb 10      side effects i have zits all over the top half of my trunk. strange! and when i got into the shower, five handfuls of hair came out. so, the chemo is definitely working. tomorrow is the day i go in for more bleo, and to see dr kunta. at that point, we'll find out whether my white count is high enough to continue chemo as planned, or whether to wait till it gets up a bit. i also get to tell him my plans to go back and forth to waco every day next week for all-day rehearsals between five-hour chemo treatments, and see what his reaction to that will be. put that way, it does seem absurd, doesn't it? i've had reminders that the chemo is doing its job — fatigue is the number one reminder. one wise friend said she'd pray that i'll have the energy to do important things. and it hit me: this is often how we find out what's important. if i have the strength to do waco, it's because that's an important facet of things that i needed on various levels. if i don't, it's because i didn't really need to do it. but i do. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   tue feb 11      bleo 3 today this morning, my usual tuesday bleomycin, then a doctor's appointment. shouldn't be anything other than routine checking, but if it is i'll let you know. last night i did a recording session — how fun that was. it really took a lot out of me, but not nearly as much as i'd figured it would. all in all my energy level has been a bit up in the past couple of days, a very good sign. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   late tues, feb 11      not really better this is barry's dad: what started as a good day didn't turn out so well. barry had his bleo blast early this a.m. and then went to see dr. kunta who was pleased that there were no more serious side effects. but...mid-afternoon, barry's temp spiked at about 103 degrees and he called for us to take him to the hospital, which is what the dr. said to do. he's now in university hospital with iv antibiotic drips, wonderful caregivers and a host of pray-ers. the word is that there may be an infection, and blood cultures are being taken to try to determine that. it could be that it is merely a chemo-induced fever, which happens when white cell count drops. barry is, at this writing late in the evening, feeling better. karen, a counselor from our church, visited him and he called to say he feels, for the first time today, like he's going to live. he's still concerned about "sing" and the nurses and drs. are saying that this may require 3 to 5 days in hospital. please keep up the prayers for the white cell count to increase, for the fever to decrease and for barry to feel well for the next round of chemo next week. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   wed feb 12      in hospital me again. i'm here at university hospital, feeling much much better. thanks to all for the prayers and support. yesterday, after much shivering, we raced to the emergency room, glad for traffic-light mercies, and i wound up here in room 632, still miserable. a saline drip and an antibiotic drip later, i was better; then a shot to the belly with white-cell-growing stuff, and today i feel human again. it's interesting to see the wide variety of people from all over the world who have gathered here to practice medicine. the accents alone tell the story, from the imperial retroflex clip of east indian dr kunta to the polynesian twang of the topknotted nurse mcgarry, to the cheeseburger-and-fries accent of dr bakhta. remember also jim agnew and genevieve davis, the floor nurses, both of whom are extremely gentle, confident, and helpful, as well as dr poteet, the floor doctor. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   thur feb 13      down it was a sleepless night last night, after a full day that started at 7 am. doctors came and went, family came and went, and finally solitude came at 10 pm. sleep didn't, mainly because i'd actually done very little and my body wasn't really all that tired. my fever never went all the way away. it got down to less than a degree by early yesterday, but later in the day and evening rose again to a couple of degrees of fever. as for my white cell count, it's still very low. your count is between three and eleven thousand; mine had gotten down to around one hundred, and today it reached a big fat zero. worse than an aids patient. what we need is for those white cells to grow (that's what the belly shots are for) till they reach a thousand. that should happen before monday when the next round of chemo is slated. if it doesn't, the chemo doesn't happen and we wait a week. a number of people (though not all) have said that as soon as the white count gets comfortably above 500, i can be released from the hospital. meanwhile, that low count causes problems: i'm exceptionally immunodeficient now. the doctor wouldn't even shake hands with me, and has encouraged me to wash often and stay free from any potential germ. someone brought flowers up, and was immediately sent away: they can't even be on this floor! (spores + immunodeficiency = bad.) my room looks out over the medurbs, blocked partially by the jutting geometry of the hospital wing that is a constant reminder to me of my hospital's shape: a cross. care for the ill: is there any other area of life in which the influence of christians has been so simultaneously complete and beneficial? which reminds me. whatever your religious preference, one thing you can do is get to southwest or university and donate platelets in my name. it takes only a little more time than simply giving blood, and is much more important. i may very well be needing those platelets soon. and if you're worldwide, there's *someone* who'll be needing them. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   fri feb 14      jubilation still feeling great after good news yesterday. late afternoon, dr kunta called with the blood results. to recap: the hcg hormone level was at 2300 on chemo day 1. each round should cut it by a factor of 10, so after the first round it should be 230, then 23, then to its normal level of below 5 because the tumor's gone. soooooo, the level was 34. it's as if we'd already done the second round. the first round of chemo worked twice as well. of course, that chemo was being supported by good health habits and huge huge doses of prayer from all around the world. so, if you were skeptical about the power of prayer, be skeptical no more. in fact, the humiliating thing about all this is that the results so far are radically better than anything we had dared to hope. god mocks our lack of imagination: we ask for a miracle, and he delivers a super-miracle. bearing that in mind, there is more to ask. first, my fever has been up and down, and i can't move on till it becomes more manageable. second, my white count is dangerously, dangerously low. it'll rise, but it needs to rise quickly. third, we need wisdom and discernment for us and for the doctors who are administering these powerful medicines, as we consider the chemo schedule (round 2 is slated to begin monday) versus white cell counts. in general, i'm happy. so far, even with a misery episode and a stay in the hospital, things are going brilliantly well. there's even a chance i'll get out of here today and be able to continue recovering away from the hospital. and, of course, i'm thankful for the small army of medical experts who have tested, prodded, washed, dried, fed, and genuinely cared. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   sat feb 15     hospital day 5 woke up today feeling much better kneewise. let me tell you about my knee, which i haven't told you about so far, other things being so pressing. we think that probably monday i bumped it on something, and in my ordinary healthy self that would have been that. but. as you can imagine, it's swollen and horribly horribly painful. (it's vicodin-painful.) part of the reason i'm still in the hospital is to monitor that knee and make sure nothing toxic happens. so, today, i was greatly encouraged to wake up with the knee marginally better. through the vicodin (a powerful painkiller) i can still feel enormous pain, but it's better today. and the swelling, which had reached unprecedented height, seems to have gone down over the last 6 hours or so. which is good, because if it gets better i'm outta here (given other factors), if it stays the same i stay and monitor but there's no big problem beyond baylor schedule, BUT if it gets worse then bad things happen — bad things that we really don't want, on any level: surgery, with its attendant risks for my immunocompromised self. so, i'm feeling better kneewise; still have a bit of temperature; still waiting for that white cell count to go up; still praying for the continued good results i've been getting all along this journey. A special word of thanks to Patricia Wiltse and Madelyn Allen, nurses who are taking wonderful care of me. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   sun feb 16     hospital day 6 i'm glad to see that my nurse today is the excellent jill mcpherson. you'll remember that she's one of the chemo nurses. she was my nurse yesterday too, and i feel safe with her around. the knee is better today, but is it better enough? it's still got fluid in there. the orthopedists circled today, ready to take fluid out of it now that my white cell count will allow them to, but others felt that it's getting better at a good enough rate that we won't need to poke into it yet. we shall see. here's the current plan, and if it works, the glory goes to god rather than to my hubris! i get out of the hospital today and i get to waco this evening in time to rehearse for my group; or, i stay in the hospital today and direct the rehearsal by cell phone. either way, i come back to the hospital tomorrow to begin round 2 of chemo, then shuttle to waco rehearsal, and come back right afterwards to prepare for the second day, and so on. there's still question as to whether my white count will be so low that i couldn't do the second week of performances. there is every chance that the chemo will have kicked in and i'll be neutropenic (that is, dangerously low white cell count) by thursday the 27th, when the show's second weekend starts. so, that's a matter for prayer. we're asking for a realistic, doable, healthy outcome, whatever that is; but the miracle prayer would be that i'd be able to safely do both weeks of the show. wouldn't that be great! more good news: my anc (which is actually what i've been calling the white cell count, colloquially satisfactory but not scientifically accurate) is 3000. yep, three thousand, folks. up from 0 three days ago. that belly shot really works, combined with god's grace. that means i'm not only not neutropenic, but back up into the range of a normal person. i have taken two vows, and will quote some browning for you. vow one: i will climb every mountain. vow two: i will not do anything stupid. and browning: i claim no other share in my fate than my ready acceptance of the will of god. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   mon feb 17      chemo 2-1 that's round 2, day 1. yesterday, i was released from the hospital, with the doctor making me promise to watch my knee and take care of it. there's actually some question as to whether i start chemo today based on the knee. but probably will. last night, dad drove me to waco and i did a rehearsal, and we drove back, and everything went perfectly well!! yep. that's an answer to prayer right there. looks like this might work. please pray that this schedule won't be too hard on me, and that everyone will exercise wisdom here, and pray that it'll all work. in the meantime, prayers of thanks for the incredible progress so far. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   tue feb 18      it works amazingly, the ambitious schedule is apparently going to work. at least it looks that way for now, and i'm being exquisitely sensitive to any sign that it won't. perhaps god knows how much it means to me to climb this mountain with him, and is granting me the upside of every bad turn that has happened. i'm going forward with chemo on schedule, after a long discussion weighing the pros and cons with drs kunta and dorovsky (each being the voice of caution but disagreeing on what that caution comprises). if the knee doesn't get better and quick, then the whole thing comes tumbling down in a way that won't be good. maybe even permanent injury to the knee itself. so we hope it clears up as it's shown every sign of doing. when i leave chemo, i go straight to waco, where i rehearse in a schedule that's mercifully shorter this year, then come straight back, sleeping all the way. i sleep all night, and do the same thing the next morning. that's how it's going to be till friday, when i hopefully stay up in waco for the weekend (administering my own stomach shots up there for the first time) and then home for a few days in a row. we're still praying and hoping against hope that i *won't* turn neutropenic (low white ct) next week as i did last. there are many indications that i should, but i'll be taking some precautions that i didn't last time, mainly the stomach shots that will begin to prompt white cell growth. how wonderful if i could get up and do the final weekend of that show, full of 3000 coughing sneezing people, in safety, with a high white cell count! and yet i'm prepared (and making arrangements) for worse. onward. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   wed feb 19      chemo 2 day 3 a word about how chemo works. at 7:30 am i walk into university hospital, 6th floor oncology, settle down in a chair in the outpatient chemo room, where several chairs are set up with iv units next to them. a nurse checks my semi-permanent needle and if it still flows she just screws the iv into it; if not she drills a new hole. then the saline starts, one liter of it to get me flowing and make sure my kidneys don't collapse (remember the cisplatin). by 8, they order the chemo when the lab opens, and an hour later the saline is through, and they hopefully begin the chemo. first, it's the steroidal prep, the stuff that keeps me from being too nauseous. 15 minutes. then, it's etoposide, one hour, and cisplatin, two hours. so, all told, with waiting, it's usually 4 and a half to 5 hours total. then, i hop up and go to waco. the rehearsals are going very well, but as the days go by i'll be getting more and more fatigued. pray that i'll conserve my energy — the temptation is to move around too much, which, among other things, keeps my knee from healing as it should. i've been pretty virtuous, though, and that knee is getting better and better every day. still not there yet, and it needs to be pretty well healed by monday. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   thur feb 20      chemo round 2 day 4 the rehearsals up in waco have been going well. people keep marvelling that i'm doing this on such a schedule, but the real marvel is for folks like my dad, catherine, amy claire kingston, and, today, leah graham, who are willing to drive 6 hours in one day just so that i can do this. i *couldn't* do it without them, and i'm eternally grateful. tonight's the first show. i come back tomorrow, and then stay in waco for the weekend. saturday and sunday, i'll be doing something i've never done before: giving myself a shot, in the belly. thanks for continued prayers. i can definitely feel their effects. so far, god hasn't called what i'm doing hubris yet, and so far the effects of the chemo have been much lighter than they could be. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   fri feb 21      hard! the first show was last night, and it took more out of me than i'd even anticipated. i'm actually not sure i can do this. but at least i'm glad that i've made arrangements so that if i can't make it it's not a catastrophe. i quit halfway through the show and had the excellent joe gerfers complete it. it was raining hard yesterday on the way up, and it looks like it will again today, so more prayers for traveling mercies are in order. so far, everything along those lines has been incredibly smooth. the show itself is going marvelously. i'm glad i've been able to do this much. it's really rejuvenatiing, even as the chemo begins to make itself known again in my body. i'll find myself just sitting there aching, as i did last time; only this time i've got a show to do. worry not; i won't push myself too too far. and of course this weekend i won't be coming back and forth every day, because today's the last day of the everyday chemo. i come back sunday for my brother's birthday, and then bleo tuesday, and don't have to do the waco trip again till thursday. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   sat feb 22      sunny it's bright and sunny today. i'm feeling well after a long sleep. still a bit weird and fatigued, though, and food tastes odd. this morning, another first: i gave myself that shot. following the directions as i remembered them, i poked a needle into my own skin. it took some gearing up, but was over with quickly, and it worked. what we're hoping this daily shot will do is to get my white cells forming at a rate that will prevent me from becoming neutropenic again. another show tonight, and a road trip tomorrow. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   mon feb 24      back to 'normal' after a weekend of shows, it's back to a more normal chemo life for me. yesterday, catherine drove me back from waco and we went to my brother's birthday party. took a lot of energy, but it was worth it. then i just came back and slept. one of the frustrating things about all this is that catherine and i are together quite a bit, but never together at all: most of the time is spent with her driving while i sleep, or her watching me sleep, or her reading while i sleep. for someone who's such a great conversationalist and companion, it must be terrible. but, as she says, it'll be over soon. still praying for health and wisdom for this next thur-fri-sat, when i'd like to be up in waco doing the show again, but should also be hitting bottom again with my anc (that's the white-cell count that shouldn't get below 1000). ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   tue feb 25      bleo today on this cold, cold day i'm going in for the second bleo treatment of this round. we'll do a blood test to see if my white count allows it, then go forward with the chemo. this blood test will give us a decent preliminary reading on how i may do this weekend. the other day someone expressed surprise that i was bald. yep - it happened the week i was in the hospital. one day several handfuls of hair came out, and i just buzzed it, and then for the next few days the rest came tumbling out, so that i look like a particularly handsome tibetan monk. i do still have a peach-fuzz coating all around, though. sleep came in fits last night, with bothersome dreams. most of the time my dreams are restorative and fantastical, but recently they've been all about hospitals and medicine. i'll find myself having the same dream over and over several times a night, about needing surgery or something. never anything nightmarish, just tedious and draining. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   wed feb 26      rest the past couple of days have been nice, in that i haven't really done anything. i get up, eat, take pills, go back to bed, get back up, putter around, eat more, read, rest, take more pills, take a nap, eat dinner, and go to bed early. that's about all i have energy for: i realized that clearing the table for dinner last night took a lot out of me! well, that's chemo for you. this week, if any experience shows, should be the hardest in terms of fatigue. we're still praying that i'll be able to go up to baylor and finish the show, though, so i'm really really taking it easy during these few days of rest. if i go up it will be tomorrow through sunday. the good news yesterday was that before the bleo shot they tested my blood and the anc count was 1300 — not bad. i'm going to check and see if i can get it recounted thursday to see where it's gone. i remember my double vow: to climb every mountain, and not to do anything stupid. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   thur feb 27      restless last night i woke up at around 3:30, and didn't get back to sleep. i think it's because i stopped taking the compazine (for nausea, but it causes drowsiness and fatigue), and also got through with the antibiotics that were waking me up at weird hours to be taken. all this means that today i'm a bit tired, but honestly tired rather than artificially. i actually feel a little better and more energetic today. hopefully that will translate into a successful performance at baylor tonight. went to get my cbc (complete blood count) this morning, and the results are incredible. my anc is over 3,500 (that's 3.5 depending on how you count it) — well within the range of healthy travel. i'll still be careful not to overdo anything, and of course it will go down over the next couple of days especially after my last belly shot tomorrow. my parents are going up with me and getting a hotel room, and either it'll be a rushing emergency trip back to san antonio at some hour of the day or night for them, or it'll be a relaxing weekend away from other family cares where they get to see a great show they haven't seen in a while. off we go. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   fri feb 28      yeah did the entire show without pooping out. as i've been doing this whole time, i've revved up for the actual playing, and during tacets and between acts i just shut down like an unwound toy, sitting there on the stool staring at nothing and conserving my energy. it seems to work. although i'm playing on most of the acts, i'm only arranging and directing one act this year, so it's been less taxing on me the whole way through. the show's going well, and i'm actually able to appreciate it some. none of the socializing and friend-visiting that i usually do, though. all in all, what a delight that this baylor thing has worked so far! we're in the home stretch. ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   ::   :: jan | feb | mar | apr