Wanted to fill you in on the biopsy results. First of all, we (my
wonderfully supportive wife and I) decided not to reveal the results of
the first biopsy until we had the results of the second.
The fact is that in late July I was already diagnosed with bladder cancer,
specifically ``stage T1 high-grade transitional-cell carcinoma''. A
lovely term, which may be translated (to quote from a medical journal)
as an ``aggressive and potentially lethal disease''. Potentially lethal,
ha! Over my dead body. (A little cancer humor there.)
At that time the doctor said there was a 50-50 chance the second biopsy
would bring worse news, and indeed we learned this morning, that I have
been ``upstaged'' to T2, which means muscle-invasive cancer (as opposed
to being confined to the bladder wall). At the T1 stage there would have
been a comparatively benign treatment that uses, oddly enough, a vaccine
originally developed for tuberculosis in 1908 by two Frenchies. But
alas, stronger measures are called for.
The doctor's very strong recommendation is a cystectomy (removing the
entire bladder) as soon as possible. This isn't as bad as it sounds, as
the technology these days is such that people lacking a bladder still go
mountain-climbing, scuba-diving and even run marathons, apparently.
Cool, I've always wanted to run a marathon! The important thing, of
course, is to say fit for ``chase the granddaddy''.
To me, the annoying part is needing to do it soon, as it will mess up
the graduate course I've been really excited about teaching and have
already put a huge amount of work into. But apparently it's something
you don't want to put off, not even until christmas. In any case, I will of
course be seeking a second opinion on all this. My current doctor is in
a clinic on the Eastside, but UW Med is one of the best hospitals in the
country, and that's where I'll go next.
Well, sorry to be going on so long! I assure you that (a) this doesn't
have to be a topic of conversation, but at the same time (b) I'm
perfectly comfortable talking about all aspects of it, including
survival rates, death, and similar annoyances, none of which bother me
at all, so don't hesitate to bring it up if you are so inclined.
It's a beautiful day and I am feeling fantastic because this morning I
finally got the damn catheter out!!!
Post 2. I'm afraid the news today was not good (which is what I expected,
really, based on what I'd already heard). There's no point in beating
around the bush, so I'll get right to it: The cancer has indeed moved
into various lymph nodes, so that in the staging system I am now
considered T3 M1. The M is unfortunately not for Mitchell but for
metastasis. If you look up the statistics on this I think they will be
rather grim, so I'll just tell you what the medical oncologist said,
besides that I should commence chemo immediately. I'll give you the bad
news first; be warned it isn't pretty before reading further.
If I had no treatment at all, I could die within 6 months. If the chemo
doesn't work, I could die within ``12-14 months''. If it does work,
meaning so-called ``complete response'' (i.e. all the cancer in these
lymph nodes gets killed off) then there's still the bladder itself to
deal with, and cystectomy would be recommended. But there would still be
no guarantees, of course, and although I haven't looked into the
statistics that far out, I don't think they're too promising even then.
The good news is that it CAN happen that the chemotherapy cures you
completely. Apparently this happened with an 82 year-old patient of his
who went on to die of a normal old age. It just isn't common. Also the
fact that I'm ``young'' by bladder cancer standards, and healthy (once
again my blood pressure was pronounced ``perfect'' today) is in my
favor. I would also point out that every step of the way I've been above
the curve, so to speak, and even today when I asked ``why am I feeling
no pain if it's that advanced?'' the doc said I'm ``very lucky'' to not
have pain at this point. So my position is that I will continue to be
``very lucky'' down the road.
The hardest thing by far is to commit to this gruesome chemo when I'm
still feeling good. I mentioned what Jan said about the guy who ran a
marathon on chemo, but according to Montgomery (the oncologist) there
are a thousand different kinds of chemo, and the one I'm scheduled for
is one of the most extreme. He even suggested I might want to forget
about work and concentrate on the chemo, but of course I nixed that
immediately. As long as I can hold the chalk, I can lecture! Among the
many unpleasant side-effects of the chemo is loss of white blood
cells. This means of course being more susceptible to infection, which
means I'll have to be careful around the munchkins and that to me is the
worst part. Montgomery I think would prefer I don't see them at all
during the process (it's a 6-week session to start) but that, as I
explained, is not negotiable. But I will absolutely have to stay away if
they (or anyone else) should be sick.
Well, I don't want to go on too long, but it does help to talk through odd cross-section of students, including two who are much older than me.
They are enrolled via the ``Access'' program (Mom, you could enroll too
if you want to learn about the representation theory of finite groups).
One of them told me he took an undergraduate abstract algebra course but
it was ``fifty years ago''. Ummm...well, sir, you might want to brush up
a little first...
I've just spent eight hours in the 8th floor luxury suite of the Cisplatin
Hotel, and I have to say they were among the most pleasant hours I've ever
spent in a hospital. The complementary room service was excellent: for lunch
the taco salad with kidney and black beans was most flavorful, while for
dinner I can recommend unreservedly the salmon in cranberry vinaigrette with
brown rice and broccoli. I did have to keep an eye on my wife, who tried to
steal the taco salad while they were putting in the picc (peripherally
inserted central catheter, in a vein that is!!!).
"This is going to sting" says the nurse. It didn't. "You will feel a lot of
pressure." she insists. I felt none. And so it went, with most of my time
spent doing math and Italian while various substances were uploaded to my
body, mostly water but with interludes for the "Nectar of the Gods", a term
insisted upon by another nurse who objected to my referring to Cisplatin and
Gemcitabine as "poison". She does have a point. But I just would go back to
my Italian; Giorgia (that student from Venice) finally finished her thesis
and sent me a copy. It includes a whole chapter on her email interview with
me, and apparently she really does plan to translate all my grammar essays
into Italian, for publication in a departmental review, and also to post
them in some online library. Fame and fortune are mine! She did, however,
make one ghastly error that I will have to insist be corrected: I am
described as Stephen Mitchell from "Washington State University". Good God!
The Cougars of WSU are the mortal enemies of the Huskies of UW. I am
In short, the strangeness continues: It turns out that day 1 is the easy
day, with the day of reckoning probably tomorrow. The fact that they give
you about seven different anti-nausea drugs is disconcerting. Anyway, one
day at a time, and today was not merely tolerable, but great!
Post 4. Oct. 5
This is really bizarre but today I just gave my lecture with completely
normal energy level, no problems at all...will go to Italian lesson this
afternoon! I know I shouldn't tempt fate like this, but so far it is has
been way, way easier than I was lead to believe. The fatigue part may kick
in later, after the chemo has killed off my red blood cells, and indeed Sara
(the nurse practitioner) says that "everyone gets fatigue". I'm sure she's
right, but then up until now she never met the legendary Mad Dog!
Oddly the most annoying side-effect is one that no doctor, nurse or their
literature even mentions: hiccups. At first I thought it was just me, but if
you search "Chemotherapy and hiccups", pages and pages on the subject come
up. It's bizarre they don't alert you to this. While it's true that hiccups
may be small potatoes compared to other potential side-effects, there's
nothing funny or trivial about it when you're getting them at least ten
times a day and have trouble making it stop. According to the web, cisplatin
specifically is implicated, as well as one of the anti-nausea drugs (but
praise the lord for those) I'm taking. In my case I think the cisplatin may
be the culprit, as today the hiccups have greatly subsided. And the
cisplatin doses are only every third week, so maybe it won't be so bad.
Naturally I've been researching every hiccup folk-remedy known to man or
beast (dogs can get them, right?). The most effective by far is to stand on
your head while doing shots of vodka and singing Verdi arias at the top of
your lungs. Nary a hiccup in my lecture! I was disappointed though that no
one asked about the bandage visible under my short sleeve, hiding the PICC.
I had my reply ready: Well, it's just a knife wound. I was in a biker bar
drinking whiskey with some Hells Angels when one of them disrespected
algebraic topology. I had to take him down, cracking a Klein bottle over his
Yours from the twilight zone,
Post 4. Oct. 14
I've been meaning to turn this into a blog with an ``opt-in'' format, but
I'm too lazy to set it up and for now will just do it by email. But
please let me know if you would rather not be on this mailing list; I
won't be offended in the least! I know it can be annoying to get these
long emails. Alternatively you can just hit the delete key. But I know
some of you actually enjoy my periodic updates, and it's very helpful to
me to write them, so I'm going to keep doing it. (And did I forget anyone
who's interested? Let me know.)
One important disclaimer: Millions of people have had cancer. Many have
died of it; many have recovered. Millions have it now. So in writing this blog, in
no way do I wish to suggest there's anything special about me having it.
Personally I have a not inconsiderable stake in the
matter (my favorite British-ism there), but in the big scheme of things
I am only one of many. I write only for fun, for therapy, and to keep
those who want to know in the know. That said, what follows is my most
verbose email yet!
They say that the chemo fatigue sets in during days 10-14. Here's how
it's gone down so far for me. Day 8 was the second infusion, of
gemcitabine only. Although I didn't have the luxury suite this time, as
the appointment is only about three hours, I had a comfortable chair by
the window. The only problem was they kept coming by to do things to me,
and I had an exceptionally gabby nurse. For crying out loud people, I'm
trying to prove a theorem here!
Day 9 and most of 10 felt lousy. Lousy, but functional. Not a big deal.
By around 5pm of day 10 (Sunday), though, I was feeling great--not just
good, but great--just in time for the arrival of the Nutty Nut Show at
5:30. Now Kaia and Finley are surrounded by an energy field at least
twenty feet in radius, and anyone who enters the critical sphere absorbs
that energy at a rate of about 15.4 hilarity-units per second. So it is
hardly surprising that I felt better still at evening's end. (Caution: If you
remain in the energy field too long, it can have the opposite effect.)
Here's a typical example of how this energy is transmitted: Wendy had
set up some lighted plastic Halloween pumpkins (a pretty good imitation
of the real thing) on the deck by the front door. On the way out, Finley
got it into his head that ``we need to watch the pumpkins'', ran back
into the house and came out with one of the kid-size chairs they use,
then ran back in because ``Kaia needs one too''. So they set up the
little chairs facing the pumpkins, sat down and watched the ``Pumpkin
Show''. It wasn't a bad show really, but I felt the plot moved slowly, and
there was little character development.
Monday was Day 11. My class was great, very high energy. My meeting with
my senior Ph.D student, ditto. High energy Italian lesson. Came home, had a
nap, worked on math until about 9pm. My mathematical energy has been
distinctly above normal lately.
Maybe Tuesday (today), Day 12, is the day the dreaded fatigue kicks in.
Nope. Very productive morning of work, finishing with three laps up and
down the hills in St. Edwards. It's a good workout, much harder than the
the wimpy Nepal trek Jay and Diane are currently doing. Well, the
altitude's a bit lower. As usual, I spent the whole walk thinking about
math. You know, the cohomology of classifying spaces of spin groups and
stuff like that. More ideas popping into my brain than I've had in a
while. And by the way, on the Friday I had also received an injection
that helps augment your white blood cells while the chemo is busy
killing them. It can cause ``bone pain'', the nurse warns me. Usually
the pain can be controlled with Tylenol, but if it's really bad we can give
you oxycodone. What the f---? I have no ``bone pain''. Zip. Nada.
Niente, if you'll indulge one word of Italian. I know they always give
you the worst case scenario, but it's getting ridiculous.
So I'm still waiting for the bad stuff that's supposed to happen. The
suspense is killing me. Meanwhile, the question arises: What is the
cause of this above normal energy? It's certainly not a coincidence. I
have two theories: First (this would be the best) it's from my change in
diet. I think my previous diet was reasonably healthy, but over the last
couple of weeks my eating habits have changed considerably. (The
casserole Wendy made Sunday night was both the yummiest and the
healthiest I've ever had in my life!!) This side-benefit, if you will,
of cancer has been noted by many. It's too soon to draw definitive
conclusions, but eating healthier can't hurt.
The second theory will be of special interest to those who can't get
enough of the subject ``neurochemistry and nausea''. The literature I've
received from the oncology folks included one assertion that surprised
me: ``It is impossible to control nausea and vomiting by will-power.''
My instinct is always against the word ``impossible'', but for practical
purposes it may well be true. They went on to explain that the mechanism
inducing nausea/vomiting is not in the stomach but in the brain.
Intrigued by this, I took a closer look at the pharmacy info-sheet on my
primary anti-nausea drug, ondansetron. And indeed it turns out that it
is a ``serotonin 5-HT3 receptor blocker''. Since serotonin is a
neurotransmitter, among whose many functions are regulation of mood and
sleep, and for years I've been taking the anti-depressant sertraline
which is a ``serotonin reuptake inhibitor'' (the doctors know I'm taking
it, of course), I wonder if I'm just experiencing a ``high'' induced by
the combination of drugs. I prefer to think it's the diet change, but
who knows? For now, I'm just going to go with it!
Day 13 awaits. Meanwhile, I feel great, and will continue to assume the
best until proven otherwise.
All friends and family who have read this far, and even those who
haven't, are hereby declared to be (borrowing a phrase from Kaia)
SUPER-DY DUPER-DY awesome!