Day #1, ?? to go.

Had a peculiar, imagined scent appear as I was driving home from the
clinic. I felt that I smelled magic markers very strongly.

Here at 1:53 am I find myself still too awake to try to sleep, though
I took my knockout-pill: the Lorazepam used as an anti-nausea pill and
an anti-anxiety med. It seems to work well for both of those, but its
well established that it makes a person very groggy as well. They told
me to take the Lorazepam tonight, but the they advised me *against*
taking the Ambien and the Lorazepam, as that would be a dangerous
amount of mellowness. But the Lorz is not working as well as the
Ambien, so that's why I'm still up.

I have some minor flu-like symptoms, as they said I would. I feel
achey and have a bit of a headache. Nothing too terribly bad,
honestly. But I suspect (from all accounts) that tomorrow (Wednesday )
will be the hardest day of this week. I'll be at those gigs on Friday
and Saturday, but I may have to resort to Red Bull. I think I should
get prescription uppers if they're going to give be so many downers.
FInally starting to feel just a little crosseyed from exhaustion,
which is about the only way I know I will fall asleep. Laying awake
for hours: that's prime-time for the old noggin to race in unwanted
directions. The person who just found out about their prostate cancer
has had similar sleepless night recently, and called this "The Long
Dark Night of the Soul," where you dwell on the worst possibilities
and star really thinking about your own possible mortality and how that
might affect those in your life. When you start to make mental lists
of how you'd divide your belongings and what you'd do with your dog,
you know this isn't helping anything. That's where the Ambien --
blessed Ambien - helps out. But tonight I'm supposed to be on my Anti
Emetic, so no Ambien. Boo.

I'm not sure how many rounds of Chemo I will have, I keep getting
different answers. The lowest I've heard is 3, the highest 6 rounds. A "round"
in my case has me being treated once, then treated again 8 days later,
then 14 days off to recover. This cycle continues 3-6 times. So the
actual IV-stick and wait in a comfy chair only happens 2 days out of
every round or cycle. The worst is not the treatment, its the after-
effects. So far, very mild, and hopefully they'll stay that way.

Cisplatin 1, Me 0.

The cisplatin is done for this week. It's too early to feel any side effects (which might take a few hours to a few weeks). While it's going in the Cisplatin doesn't feel like anything. The Gemzar (Gemcitabine) is running now and that stings a bit. It's livable, though. It just feels like someone lightly pinching my arm near the IV site.

Into the Rabbit-Hole pt. II

Just saline for the fist hour and a half or so, since the Cisplatin is very hard on the kidneys. Then the Gemcitabine and finally they'll finish the treatment today with another 1.5l bag of saline.

The Cisplatin is the evilest of the two drugs in my opinion, with potential to cause hearing loss, numbness in the fingers and toes and kidney damage. I can deal with tiredness, hairloss and nausea, but I'd like to emerge from this with the ability to still play and hear music. And to stay off dialysis. Again, I'm doing my best to stay positive.

Into the Rabbit-Hole

T-Plus 27 minutes.

Running very late at the Chemo center, still haven't begun. Busy here, many people with headscarves or shaved heads. Most older than me, but it's a little hard to tell sometimes who the family are and who the patients are. The Emend is kicking in and I feel very tired, napping sounds good. My bro, mom and R are here with me.
I did some research last night on the drugs I'm scheduled to get today and was reminded again how serious this all is. Gemcitabine and Cisplatin are highly toxic chemicals with sometimes severe and occasionally permanent side effects. The worst case scenario is very scary, especially for a musician. It's a trade off against the very real scariness of the cancer continuing to grow. To intentionally put poison into your body in an attempt to kill another poisonous growth is to turn your body into a battleground. While my immune system is trying to restore equilibrium, I will be immunosuppressed and susceptible to sickness and infection at a minimum for the next 3 months or so. Good thing I'm not working with kids right now.

It begins.

"Emend": My preventive anti-emetic (anti nausea) pill, day one.

News and more reflections

I have just found out that a person very close to me has been diagnosed with prostate cancer, and just received the diagnosis late last week. Very surprising news that never comes on any sort of
schedule.

Q: What do I say? A: What people have been saying to me, and what has been very helpful: you'll get through this; and know that I'm thinking about you and willing to help in any way that my particular skillset allows. You are not alone. I love you and care about you. The most important thing is to speak from the heart. There is no script, no right or wrong thing to say.

Identify the people in your lives that would leave a hole if they weren't there anymore, and man-/ woman-up and *tell* them, even if they don't have a serious health condition. Easier said than done sometimes, for all of us. I am no world-wise sage, but I can tell you that I feel much closer to many as a result of the outpouring of support that I have received. Notes small and large, phone calls, even just hugs. And I thank you for it, sincerely.

Observations

I'm at this convention, playing and having a very nice time as planned. I have noticed here that people treat me differently, and not necessarily in a good way. There have been some awkward conversations, as if some people feel like they're supposed to say something and don't know what to say, so instead just stare at me or even appear to avoid me altogether. I find myself wondering if some think that cancer might be catching, like AIDS or something?

Everyone deals with this in different ways, both the person with the ailment and the people in their lives. I have already seen the spectrum of reactions, from those mentioned previously to tears to poorly-timed but well intentioned humor and everything in between. I'm new to this, but I have already been reflecting on my actions with some of the people I've known that have bad serious ailments. There is a sense that I have needed to contact them right away and say something, otherwise I'm not a real friend, etc. I have felt it: like there's some window past which it it too late to call or email, etc. Being on the other side of the fence, I hope no one feels that way with me.

This convention that I'm playing at is a science fiction convention, and people dress up in all manner of costumes. Darth Vader, Klingons, characters from cartoons, tv shows, etc. I saw one woman that gave me pause: she was thin and pale, perhaps 25, with a chemo-shaved head. She was in an electric wheelchair and wearing a hospital gown. She was either a fan that was coming out to the con while very sick (and hooray for her, if so), or wearing a costume that was in very poor taste.

And this made me think that I'm a part of that culture now. Whether I like it of not, I'll always be a part of that club. And I can see it being a big part of someone's personality and daily life, or a minor part. I have no idea how it will sit with me. Certainly it is a big part of my life right now, but I hope that it will be only a minor matter -- requiring only occasional checkups -- a year from now.

Apropos of nothing

Decisions, and a plan

I met with a new oncologist today, this one at the Minneapolis Clinic
location. Very knowledgeable, very patient, very honest, great sense
of humor. White hair, white gunslinger mustache, kind demeanor. I will
call him Dr. Grampa. My goal has been to take Dr. Hunter's (the Mayo
Dude) advice and do the chemo first. I was trying to get ahold of Dr.
Ungawa until I realized that this ultimately required only the buy-in
of my oncologist. Ungawa seemed a little sheepish today when I talked
to him on the phone and told him that I was following the advice of
the Mayo doc. I still may have to use him for the surgery, so I didn't
burn any bridges.

Dr. Grampa agreed to do chemo *before* surgery, which is great news in
my opinion. This is a newer way to do things, and it just now becoming
the brand-new standard when patients are young enough to handle the
chemo first. Occasionally an older patient may have complications from
the surgery and it may delay the start of chemo for a few months,
meaning the cancer will have time to spread. Doing the 3 months or so
of chemo beforehand will potentially kill the cancer, but I still need
to plan on having a "partial cystectomy" afterward. This is a fairly
invasive surgery to remove part of the bladder, leaving everything
basically the same as it was, except that I'll have to take a whiz
about 10% more often. Big deal, I say.

The chemo will begin this next Tuesday, July 6th. I am nervous. I have
heard widely varying stories of chemo reactions. I am learning that it
depends partially on the specific drugs they treat you with (I will be
treated with Gemcitabine and Cisplatin). On this regimen it is common
to lose your hair and feel nausea. As mentioned in another post, the
anti-nausea drugs can sap your strength even more so than the chemo
drugs, so lets hope that I don't experience too much nausea.

Many have asked whether there's any food they could bring over or
something during these treatments. I am hugely touched by this and it
means a lot to me to have such generous offers. Honestly, I have no
idea what will sound good or what I will be able to keep down, so I'll
wait a bit before taking advantage of the meals-on-wheels offers, if I
may, which may be a huge life saver later.

Many epiphanies today:

1) I reflected today on the apparent un-coolness of my cancer. I was
at the pharmacy picking up a few prescriptions and there was a fancy
breast-cancer survivor end-cap. Pink ribboned coffee mugs, key chains,
t-shirts... everything you can think of. Was there a urinary cancer
end cap? A single yellow ribbon? No. Clearly, I got a second-rate
cancer. Figures. People like breasts (who doesn't?) and as humans we
spend very little time thinking about our bladders, so perhaps that's
why. Still. Grumble.

2) On a less curmudgeony note, I remarked to R this evening that this
process could easily be very lonely or scary, and -- thanks to the
enormous support I have had -- I feel strangely un-lonely and un-scared.

3) And, I realized when driving past my old vet's office today that I
took it harder when my dog Mia was diagnosed with cancer than when I
got my own diagnosis. I don't know why this is, other than she was a
creature under my care: it was my job to watch out for her. I can't
really see the forest for the trees, I guess: its harder to view one's
own possible mortality from the inside than to see the possible
mortality of a loved one. Or at least it is for me.

On Thursday I will attend a mandatory "chemo class" at the
oncologist's with my mom, which I hope for her sake is nothing like a
Lamaze class: If they make her push around a fake I.V. pole the whole
time just to make me feel better, I may trash the place.

The weekend starts for me Thursday evening, and a merry weekend it
will be. I will play music, stay up too late, see old friends and be
as prepared as I may ever be to begin the chemo next week.