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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
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I n November of 2002, I noticed some lumps in my chest. Can't be good, I thought. I should see the doctor. The doctor did some tests, and found a hormone level that was 500 times what it should be. A specialist confirmed that I indeed had a testicular tumor, and it had to be taken out pronto.
On my way out of the specialist's office, the secretary told me that my insurance card hadn't gone through. The insurance company told her that my account had been cancelled. Yep. Partially due to my own negligence when I changed addresses, and partially due to the negligence of my insurance reps, I was without insurance. But one must plow forward. So, on January 2nd, I had an operation that began my cancer adventure.
Instinct led me to put these diaries, blog-style, on my website as my journey progressed. Amazingly, people responded like crazy. Numbers of friends, near and distant, and even numbers of strangers, have expressed gratitude for this peek into what it's like to go through cancer. So, here they are, in chronological order.
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thur jan 2
surgery
- a radical orchiectomy, to remove a malignant tumor. crap. anyway, it was a pretty straightforward procedure, and the doctors say it's a young man's cancer, with very good chances of recovery.
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fri jan 3
home
- ...well, at least at mom's and dad's, where they're taking very good care of me. on our way home from the surgery, they told me that mom had asked the doctor what the chances are that this tumor is malignant. he looked shocked, and said "100 percent." he had thought he'd communicated this perfectly to my dad and me in our previous visits, and we thought we'd communicated the questions perfectly, but somehow a wire was crossed. interestingly, atul gawande just had an article in the new yorker about this very thing: communication between doctor and patient. this serves as an object lesson to me: forever, i'll ask and ask and ask until the subject has been covered from every angle. it's my duty.
so. malignant.
at mom's and dad's, doped up but still aware, i've been in pretty much pain. my mind is being shielded from the worst, though: i didn't feel particularly cold, but my body was shivering violently at times. after a simple trip to the restroom, i actually had tears streaming from my eyes, even though i wasn't particularly crying. so, the drugs alter my perception, but my *body* was weeping.
it looks like i'll recover ok. now they'll test the tumor for type and age, and later on check me to see if it's spread any. please be in prayer.
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sat jan 4
ouch!
- as if all this weren't enough, my mom took a bad spill and, after several hours in the emergency room, has injured her already-bum knee, and also has a harry potter scar. sheeshe! she's in good spirits, though, and is grateful it wasn't worse. keep her in your thoughts and prayers!
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mon jan 6
better
- feeling about the same, actually, as i did on friday, but the weekend was good to me, and i am a bit more able to get around, and quite a bit less groggy. it's going to be a good while before the scar heals, because it's on the lower abdomen (it would show on christina, not quite on britney). it's amazing how much those lower ab muscles are used — standing, sitting, moving, talking, laughing, just about anything. i'm hoping to be well enough to do stuff by the weekend, but planning on taking it pretty easy. talked to the doctor today, and he said they're doing more testing on the mass; i'm seeing him again thursday to get the staples out.
no matter what happens, we're not out of the water yet, so i'll appreciate your prayers and well-wishes, especially in the financial department, insurance issues being still up in the air.
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tue jan 7
a new low
- for the first time, my sleep was fitful and my waking was painful. i'm simply feeling like i got whacked by a large metal object. i remember from my last abdominal surgery that midweek was the worst, but i'd forgotten how bad that worst really is. man!
meanwhile, we're still waiting on the pathology report — apparently the different lab people have to get with each other and compare notes. please pray for a mild report! in the meantime, we're slowly getting the financial ball rolling: the current financial forecast ranges from significantly sucky-yet-survivable to pretty ok.
i've been buoyed by the mass of emails, notes, flowers, and offers to pray and help — it really means a lot, when something like this happens, to have your friends rally around. thanks.
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wed jan 8
good friends
- things are back to their regular course today, after a pretty tough day yesterday. the pathologists have said they're *almost* through, and by the end of the day should have some news. at any rate, i'm going tomorrow to get the staples taken out, and — ambitiously, perhaps — am planning on getting out a bit for a short gig. there's a cat scan planned for friday, and then i've finally decided that on friday night i should at least try to go out to opening night of the new opera "dead man walking" at austin lyric opera.
so, hopefully these few things will help me a bit. but the notes of prayer and support are perhaps the most valuable thing in all of this. health, like most other aspects of fortune, comes and goes, but good friends are a treasure.
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wed jan 8 evening
info
- a friend, adrienne lawrence, sends this site along, and actually it's enormously helpful:
tc-cancer.com
it has loads of information about this kind of cancer, and all sorts of resources. thanks, adrienne.
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thur jan 9
the news
- went to the doctor this morning for the Big Talk, and the news wasn't good, but wasn't bleak either.
the tumor that was removed, and the other tissue that was removed with it, are embryonal cell carcinoma. it was malignant, and by all signs had done some evangelical work in my body for some time before we caught it. that means there is other cancer elsewhere that needs to be found and treated.
we expect the CT scan in the morning to show that the lymph nodes, and possibly other areas, have cancerous cells. then an oncologist will look at it and recommend what the chemo schedule should be. whatever happens, there definitely will be chemo — likely a few months — and then we'll continue to scan and check periodically forever.
so. not what i'd have liked, but on the other hand this type of cancer has an enormous success rate.
now for the other news. the wonderful insurance folks have pulled through again, and to get a good picture of where i am moneywise, picture me bound and gagged and standing at the end of a plank with pirates prodding at me from behind. folks, as of right now i'm uninsured, and it doesn't look like things will get better any time soon. surely we'll get all this ironed out, but in the meanwhile time is passing and the bills are mounting at a logarithmic rate. again, pray for me.
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thursday night
good money news?
- well, we did some serious scrambling this afternoon, with the help of the wonderful deborah wedge, and i *think* it may all turn out ok money-wise. i believe i've been able to get into a really nice medical package that will take on the gargantuan finances to come, and that will fit me to a t.
we're still waiting on news that will come tomorrow morning (fri), but it looks pretty good. please continue to pray that this will all work out. if it does, the cat scan will be postponed till monday or tuesday.
special thanks to dr lewis russell, one of the finest urologists in the country; time and again, when folks in the know asked us who we were dealing with and who did the surgery, we mentioned his name and they said he'd be the one to go to even if you had to travel cross-continent. his nickname is 'lucky,' but we're the lucky ones to have had him right here. thanks for all you've done, dr russell.
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fri jan 10
new deal
- i'm all signed up and taken care of with the new health package, the only tick being that i've got to switch everything away from the baptist health care system to the university system. easily done, but slowly done! i've spent the day on the phone and the road getting papers signed, records transferred, and doctors in touch with each other and lined up with me.
(meanwhile, in a development that puts us in mind of the baudelaire children, my dad woke up today horribly horribly ill and with 2 degrees of fever and shaking and aching. what next?!?!)
fortunately, due to the work of some good folks, i've been able to arrange to see a urologist and an oncologist early next week, and have that cat scan done asap.
prayers of thanks that the financial issues are completely taken care of, and that the new medical people have been available and willing to be worked with; and new prayers for dr ian thompson and dr geoffrey weiss, and their already above-and-beyond-the-call-helpful assistants lisa and wanda. gratitude also to the enormous continuing help of dr julie abbott.
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sat jan 11
ambulatory
- yesterday was a litmus test for me in many ways. i got up early and spent much time walking and driving around, wearing real clothes, and doing fairly active stuff for the first time since the surgery. i'm grateful.
last night i went for broke and dressed up to go to opening night at the opera, a stunning and cathartic production of the brand new opera 'dead man walking' by jake heggie. it was exactly what i needed — an affirmation of the humanness of us all, and of the constant presence of god and our need to receive and transmit grace. if you're at all free on sunday afternoon or thursday or saturday night, i can't recommend anything more highly. modern art at its very best.
and i made it. i was able to do the road trip and all the walking and elevatoring and sitting in theater seats, with only the slightest discomfort, and i wasn't pooped out any more than could be expected. that was very good for me in a lot of ways.
next on the agenda: urologist (dr thompson) monday and oncologist (dr weiss) tuesday. keep me in mind!
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sun jan 12
certain and uncertain
- certain that i'm in god's hands and that things will turn out for the best; uncertain as i face new doctors and get re-examined and re-signed up and re-applied and re-tested and all that.
coming up: monday i meet dr ian thompson, my new urologist, who will examine me and look over my records, and recommend further stuff, including cat scan; tuesday i meet dr geoffrey weiss, my new oncologist, who will look at all this from a cancer specialist's point of view and make further recommendations. my hope is that not only will these docs be as good as they're reputed to be, but that i'll get along with them and be able to communicate well and all that. that kind of thing is not what i usually think of or am usually good at, but i'm realizing the importance of it.
and, of course, we hope for mild outlooks, and prepare for rocky outlooks.
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mon jan 13
going in
- this afternoon is when i'm going in to meet the urologist — i'll have a report later. by the way, it's my mom's birthday today. happy birthday, mom!
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tue jan 14
waiting to scan
- went to the new urologist yesterday, and he was as good as one could ever ask for. gentle, confident, realistic in outlook. things are turning out well. he's ordered a catscan for me for sometime asap, and suggested that i hold off on going to oncologist dr weiss till then so that we'll know something. in the meantime, the band is doing a special engagement at the silo this thursday evening. it's cancer-rific, being early in the evening and a smoke-free place. come on out and hear some good jazz.
ahhh, it's nice to get one's mind back on music. i've been a professional cancer patient lately, and it's time to get back to business.
waiting, waiting, waiting....
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wed jan 15
s l o w
- the office called back late yesterday with the 'expedited' time for a catscan — feb 4th. yep. i was told it could be slow going, but really now. fortunately, there are good people in the system who will work with you, and i've found a couple of them. please pray that this thing will move quickly! the doctors say that testicular cancer in particular is something that you have to jump on immediately, and i just can't wait till next month for this.
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thur jan 16
thanks
- did some scrambling around, and my new best friends wanda, lisa, and blanca did some scambling on my behalf, and we got that scan date moved forward to tomorrow. yeah! it's slated for 7am friday morning, and then we should be able to get things rolling. so, it turns out that switching systems cost me about a week, which ain't bad at all, considering.
after that, we'll get together with the urologist and the oncologist (who i haven't met yet), and figure out what exactly happened, where, and what to do about it. still, of course, praying that we won't have to do much (there is the outside possibility that there's *nothing* more — wouldn't that be nice), but ready to hear just about anything. as i've mentioned, we don't really know how long this thing has been there.
all in all, though, it's nice to at least feel like we're going somewhere. today i'll be tooting around getting x-rays and lab reports from the old places all over town to deliver to university. then tonight it's a gig at the silo. come on out and hear some long-overdue jazz.
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fri, jan 17
results
- just got back (11:30) from the hospital; did the catscan and a doc looked at it and shared the results. they found an enlargement of the lymph near my aorta, a very common place for testicular cancer to spread when it spreads. it's the first place they look. so far, they haven't found anything else except a smudge on my lung (which might be a pleurisy scar).
so, i go in to see dr weiss next week and he'll have a fuller explanation of what all that entails — probably chemotherapy — and we'll go from there.
not nearly as bad as it could have been. thanks to everyone for the great words of support and encouragement. this ain't over yet, but it soon will be.
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sat jan 18
dealing
- i've received a flood of calls and notes, and i do appreciate them all. the prayers seem to have worked. at the very least, this cancer moves quickly; it's merciful that we caught it in time, before it got a chance to spread widely.
and now i'm starting in on eating better and all that.
last night, my girlfriend catherine and i celebrated an anniversary: we met exactly one year ago. we dated casually, and then, right toward the end of the year, allowed ourselves to get serious and fall in love. then i got cancer: she's been a source of strength and gentle support through all this. so, we had a lovely dinner and thought back to last january's coffee-date. what a year.
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mon jan 20
more waiting
- going to the oncologist tomorrow, and wondering what's going to happen: the type of chemo i might be in for, the intensity of dosage, and how it'll affect my life for a while. for instance, i'd really like to be able to do my yearly thing for baylor university in february — will this cut into it? will i even get there at all? if nothing else, i could use the revenue; and of course the musical aspect of it would be a type of healing in itself. i'm praying that will work out.
i've run into an old favorite john greenleaf whittier poem lately: on friends' refrigerators, on websites, on cards. maybe it's for me right now.
Know well, my soul, God's hand controls
Whate'er thou fearest;
Round him in calmest music rolls
Whate'er thou hearest.
Nothing before, nothing behind;
The steps of faith
Fall on the seeming void, and find
The rock beneath.
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tue jan 21
findings
- went to the doctor today. dr weiss is my doctor in the sense that tintoretto's crucifixion is by tintoretto. he's there, and he advises and lends his expertise (hundreds of cases like mine), but the main guy who deals with me is dr gopal kunta. he's genuine and precise, and explains things well. we told him that he'd be in our prayers through this, and he was glad to hear it.
here's the deal. analysis of the cat scan showed several lumps in that area (the largest still rather small at 2.5 cm), plus that enigmatic spot on the lung. this puts the cancer at stage II or possibly the beginnings of stage III. this type of tumor is very chemosensitive, and that's good. there'll be three five-day rounds of chemotherapy (B. E. P. for those keeping score), three weeks apart, with top-offs in between.
so, starting monday, i become a chemo patient. dr kunta said the chances of severe side effects, beyond the usual nausea, etc, are rather small, but to be prepared for them nonetheless. firsthand stories from guys who've had about this level of cancer range from "pretty easy" to "pretty harsh." i'll take easy, please.
the complicating issue in all this is that i'm to start my yearly gig at baylor in mid-february. if all goes well, i can manage it. if not, not. as i mentioned before, it would be nice.
all in all, not as bad as it could be, and in any case something that must and can be faced. onward.
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wed jan 22
chemo thoughts
- some things to keep in mind and be praying for: i begin chemotherapy monday, so i'll be in the hands of medical technicians, some with more experience than others. (yesterday, a rookie van goghed my arm in her attempts to draw blood. ouch.) i'll also be experiencing a variety of side effects, possibly sailing through with little besides fatigue, or possibly being whacked pretty hard. in addition, a concern is that my white-cell count will be dangerously low, making my immune system very weak just as i'm spending time in a hospital, a type of place notorious for being infectious.
speaking of which, one of the interesting things about switching to the university system from the baptist system is that each one has its own look and feel. the baptist system has that balance of poshness and slight fray and modest scale that one feels in a mid-century country club like oak hills (as opposed to, say, the dominion); the university system, meanwhile, combines impersonal grandness and crispness and large blocks of stone in exactly the manner of — surprise — a university like utsa. big plazas, right angles, neo-miesian architecture (as stunningly embodied by the cancer therapy and research center, where i went yesterday), all communicate the state-ishness of the u. system, in contrast to the curvy lobby and peppy carpeting of NE baptist hospital or the low-slung, dated mod style of the med office buildings around it.
how much of that look and feel is a result of conscious branding, and how much of it arises organically out of each institution's very nature?
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thur jan 23
good people
- i've mentioned again and again the value of supportive friends, but another kind of support occurred to me: that of people who have made cancer research possible. i'm lucky to be in san antonio where the cancer therapy and research center is: and the buildings are plastered with the names of people who've given huge amounts of money to make it possible, often in the name of family members who themselves had cancer.
as we were there the other day, mom began looking at all the rooms, hallways, facilities, and wings and the names attached to them. she recognized many as friends of ours and family friends, as well as community high-profiles. how wonderful it is that people who have the means use that money to make our lives — my life — better. thanks.
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fri jan 24
the big question
- well, actually it *hasn't* been a big question in my mind, but others have voiced it: why did god let this happen? a gal in the cancer support group i went to the other week said, regarding some blessing, that "maybe this was why god..." and didn't get to the end of the sentence because another said, "NO! god did NOT do this! he didn't want this to happen!"
interestingly enough, i'm not so sure. after all, how do we know that god *doesn't* ultimately cause these things? we're in his hands anyway, so at that point maybe my cancer is a way of accomplishing some good that would not happen otherwise. and in fact we are in a broken world where things go wrong and bad stuff happens: in other worlds, everything's just fine — cherubim live there, maybe. but in this one, perhaps god had other plans.
i know, traditionally we blame the bad stuff on satan — but really, god created satan, and he's part of our story. our world is no more a battlefield for satan and god than middle-earth is a battlefield for dark lord sauron and j.r.r. tolkien. tolkien *wrote* the thing. there's no contest at all. he knows exactly how the story ends, and every scar he gives frodo and sam, every monster he pits them against, is part of the plan.
of course, that doesn't mean tolkien is laughing sadistically. if he's the author i think he is, he probably wept right along with his characters, and felt their fear right along with them, even as he wrote the words of their difficult, necessary journey.
perhaps so, then, with our author and finisher, no?
on more joyous subjects, i'm playing jazz at dolores del rio tonight. you could come out and hear some guys having serious fun. tomorrow, saturday, i'm playing an original score, live, to accompany the 1927 silent movie "wings," at the embassy. yes, i love my job.
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sat jan 25
good friends
- what a great gig i had last night! several friends showed up, and after the dinner crowd left and the jazz crowd stayed, there was a set that felt made in heaven. what's more, it was recorded. i can't wait to see if it was *actually* good.
music hath charms to soothe the savage breast, and i must say that one of the things that keeps me going is that i have so much good music near me. i get to make music, write music, share musical ideas with people, and furthermore hear music that other folks have written. what a wonder, that stravinsky can be reduced to ones and zeros, and imprinted on a plastic disk, and played as if a symphony were right in your room! by the way, to feel the experience of what it's like to encounter cancer and defeat it, i recommend listening to "the firebird." the final 10 minutes are a wordless saturnalian gospel of terror and triumph.
each new time i've found out something, it's always been attended by a huge unknown to come: i have a tumor; we didn't know whether it had spread, so we waited for the catscan, not knowing what to expect or gear up for; the catscan showed that it had spread to several places, and chemo was now in order; and so, monday, i enter chemotherapy, and again it's a plunge into the unknown. will i be one of the ones who breezes through it? will it knock me down for three months? the end is the same: the cancer will be defeated (with the combination of chemo, my good attitude — which i'm grateful for — and the army of people like you behind me, that cancer doesn't stand a chance). but the only question is, what are the next three months going to be like.
of course, the next three months are a plunge into the unknown for *you* as well. so i at least have the advantage of not being able to avoid that fact.
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sun jan 26
the powell doctrine
- another good gig last night. i had the honor of playing original music for a silent movie that was playing at the embassy 16. it was a sold-out show, and the crowd responded well to my score; at two hours ten minutes, it was a mini-marathon of constant playing. very nice, to exhaust oneself in such a fun and challenging way.
please pray for me tomorrow and this week. my hope is that the medical tech people will be not just good but great at what they do, that the chemo won't mess with me too much, that i'll be able to keep my health up in other ways, and, of course, that the chemo will actually work and kill those towns and villages of cancer.
from what i can tell about cancer treatments, we're operating on the powell doctrine here: overwhelming force with a good exit strategy. instead of dribbling it out over the course of months (like 20 rounds of once-a-week), we're going in pretty strongly (three rounds consisting of one solid week on, then two weeks of one bleo session), and hopefully that's all it'll take. if it goes well, the whole thing'll be done in a couple of months, and from then on we just go in every month to check, scan, test, and scour.
what's it going to be like to have bleomycin, etoposide, and cisplatin swirling through my body?
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mon jan 27
chemo starts
- well, it was a long day. got in and got all the paperwork done, and then started shooting up. they gave me two of my three ingredients today; the third, bleo, will be tomorrow, and it comes with blood tests and an early small dose to make sure i don't react violently against it.
they say the full effect shouldn't whack me (if indeed it does, to whatever extent) till a few days down the road. it's most certain i'll be bald for a while; as for the less benign side effects, we'll see. every person is different.
i'm still praying that the scheduling — and my demeanor — will allow me to go back and forth to baylor this february.
and, i've added new names to my list: marilyn hurst, the capable, assured nurse in charge; the pleasantly no-nonsense jill macpherson; and the quick-witted, sarcastically good-natured darren laplante. their tough job is to be nurses in the chemo room.
actually, with the addition of some brian eno and less light, it could be a chill room, with people mellowing out in big comfortable chairs and occasionally sweating or shivering.
tuesday is the bleo — we hope for good reception and minimal side effects.
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tue jan 28
day 2 of chemo
- 3:00 PM just got back from the hospital. this time it went a bit quicker, even though today was a bleo day. the bleo is a small amount of stuff and doesn't take long at all. thankfully, i tested well on it and had no adverse reaction. also, so far am feeling no nausea at all.
in general, i'm feeling just dandy. as they say, the effects of the chemo can't be expected to work for a few days, but maybe this is a good sign.
i'm impressed by the good nature and easy competence of the staff who's working with me: marilyn hurst, jill macpherson, and darrell laplante. they're a fun crew and help the day to go quickly.
they say you should "visualize": picture the chemo doing its good work, picture your body healing and in a future healed state, put a picture onto god's presence, and keep it with you. one of the things i'm visualizing is the hundreds of people, some of whom i've never met, who are in mind of me these days, and praying diligently. how reassuring.
sunday, my good friend jeff walker was in town, and before he left he knelt with me and anointed me with oil, not out of any superstitious sense but out of a desire to ritually symbolize the consecration of my body during this trial. my family gathered round me later that day and held hands and prayed and sang. i remember, as i was being held and anointed by my dear friend, and surrounded by a tall grove of people who love me, that this is what health is.
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wed jan 29
chemo day 3
- after three days, i'm feeling a bit fatigued — something that's expected but something i want to fight against. i slept all the way through the chemo treatment this morning; it's good that i'm resting and sleeping but maybe not so good that my body is this fatigued. on the other hand, if that's all there is, i'll be glad.
my schedule is basically this: i arrive around 7:30, get hooked up and started around 7:45, actual chemo starts around 8:30, and i'm through at 1pm-ish.
had dreams last night of bad news and things gone wrong. i had to wake up and tell myself "nope. just a dream."
as i'm a few days into this without nausea, vomiting, fever, or any of the other early symptoms, i'm reminded that chemo in the 21st century isn't anything like it was 30 years ago, when it was a cure almost deadlier than the disease. part of the reason for that improvement is the cruel and humane scientific process of enlightened trial and error.
earlier, i mentioned the names on the buildings and rooms that people had given. every one of those people had a cancer patient in the family, and often without happy endings. anyone jealous of the beautiful surroundings of europe should remember: this is our version of angels in the architecture.
if i've been able to stand tall so far, it's been because i'm standing on the withered shoulders of giants.
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thur jan 30
chemo day 4
- felt a bit more chipper this morning, going in. we'll see. this was the first time i drove myself to chemo. catherine came over and we went in together (she has been with me all day every day). as yesterday, i was there a couple of hours before i dozed off. this time, we were done at around 12:30 — great news for a possible baylor schedule in a few weeks.
feeling a bit sore in the mouth, like i just had a hot hot pizza. That is one of the things they say you should expect. let's hope that it doesn't get any worse than this.
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fri jan 31
chemo day 5
- ...and the last day of this round. i go back in tuesday for my regular tuesday bleo, but the other two chemicals are over today for two weeks. so far, no horrible side effects, just a bit of sick feeling.
furthermore, noticed last night for the first time that the lumps in my chest have gone down significantly! an answer to prayer, and a testament to modern medicine.
i'm feeling well enough to play a gig this weekend. i'll be at dolores del rio on saturday night.... come on out and hear some jazz.
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