Archive for December, 2008

Just to say.

2008 has been quite a year. My gut response is, “thank god it’s almost over.”  The truth is, though, it was pretty fantastic in a handful of ways.  I may have gotten cancer, which was REALLY inconvenient, but that would be a terrible way to sum up the year.

At the beginning of 2008 I built and sold my first bike (thank you matthew machine!) and since then have built nearly 20 more (the current wait list is in the 4-6 month range).  Over the course of the winter and spring, my step father contracted and then survived a particularly brutal strain of hepatitis A (something he ate in vietnam, we think, which sent him to a place like purgatory for several months).  In the spring, my little sister graduated from Columbia U.  Over the summer, my parents bought an apartment just down the street from Hill and me, and after about 8 years of living in Kathmandu, are retiring to NYC (though I don’t think either of them plans to actually RETIRE any time soon).  In the fall, Hill and I managed to get up to Nova Scotia despite cancer complications.  Also in the fall, the people of these united states, after 8 years of tyranny, had the good sense to put a black man with a funny name in the white house..  an act that goes miles to restore my faith in humanity, and my sense of the potential of this GREAT NATION!  Recently, I managed to make it to 35.  Alive.  And most significant of all, to me at least, Hillary L. Nanney agreed to marry me.  It has been a year to remember, and memory is merciful.  There was a pot of fish chowder (with fresh chantarelles) that we made up in N.S. that will be more significant in my memory than the misery of chemotherapy.

There has been a bit of a change in the treatment plan.  There isn’t any more lukovorin(?!).  It’s a vitamin that they drip you with to potentiate the i.v. 5FU.  So they’ve switched me to oral 5FU.  The upside to this is that i don’t have to wear a pump around.  The downside is that I have to take the stuff twice a day for two weeks straight out of every three.. “for 8 months instead of 6.”  “8 months instead of 6!?  what happened to 4?”  “I’m sorry if I ever said 4.”

Yesterday, they also started me on Avastin.  Avastin is a drug that turns off your body’s ability to grow new capillaries.  The idea is to isolate and starve tumors, or in this case, potential future tumors.  Naturally, though, it makes healing from minor cuts and bruises pretty hard.  That added to the wildly diminished white cell counts from the chemotherapy makes it absolutely necessary that I get NO cuts or scrapes or anything else.  They have all but forbidden me from working in the shop.  As it is, I don’t even weld with gloves on.  They’re telling me now, that I shouldn’t so much as get out of bed without them.

I walked out the door of Alberto’s office yesterday, and immediately my hands went pins and needles numb.  I was talking with Hill on the phone, and had to cut it short for fear of dropping the thing.  It was nearly impossible to get change out of my pocket to get on the bus.  It was a cold day in NYC yesterday and once my hands warmed up a little, they went back to normal.  I got off the bus up in my neighborhood, and they went instantly tingly again.  My hands have become (very suddenly) SO cold sensitive, that last night pouring Billy a cold beer from the fridge got my finger tips numb…  rinsed my hands off with cold tap water after feeding the beasts, same thing.  I did a little google search this morning, and it turns out to be a pretty common side effect of the oxaliplatin.  Strange nueropathy.

Emotionally, I’m pretty beat up.  Enough.  I’m ready to be better.  I have a lot to do.  I know in my heart that I have this thing by the tail, but the marathon quality of the fight is pretty daunting.  I’m just exhausted.  Hillary continues to be a hero.  She pulls her weight and about two thirds of mine around the house, and works, AND is applying to grad school.  I can’t possibly be much fun to be around these days, but she continues un-phased.

I will try to get back into a bit more of a rhythm with this blog.  It’s been hard lately to do it, somehow.  Thank you all for soldiering on with me.

Boooooooring.

Once every two minutes or so this thing makes a noise like hoarse mice fighting, and drips another tenth of a milliliter of 5FU into my blood stream.  Yuck.

I got back from chemo yesterday at about 3:30 and realized that in the last 24 hours I’d had: vicodin, ambien, milk of magnesia, percocet, oxaliplatin, aloxi, lukovorin, 5FU, and zofran.  I haven’t taken any recreational drugs (besides cafein and alcohol) for over 20 years.. Not a principle thing, just not my style. This sucks.

Billy came over and made some delicious chicken soup.  I didn’t eat much, and it didn’t stay down.  So much for this new stuff not being so bad.  Doc..  you’d better try more skill.  I have a feeling that they’re running out of antiemetics.

I need to get dressed and go back in.  More later.

Thank you all over and over for being part of this whole trip.  When I’m feeling this crappy, I think of all the folks out there without insurance, without support, without savings..  folks who find out late..  folks who have no choice but to continue working through treatment..  Folks who don’t have a cheering section.  I don’t think I could do it.  Those folks are made of sterner stuff than I.  The fact that in this great nation it is possible for people to end up in that situation is barbaric.  On their behalf, we should be DEMANDING reform.  Profiteering on peoples’ health should not be legal.

(whoa..  where’d that soap box come from?)

My love to you all.

apologizing again for radio silence

It’s been hard this last week to know exactly what to say.  Thank you all so much for your continued comments and emails.  I hope I didn’t sound too morose in the last post.  Many of you said things like “don’t give up” and “keep fighting.”  I didn’t mean to give any of you the impression that I had any other plan!

Tomorrow I start chemo again.

In the last week I’ve had an incredible resurgence of pain from the surgery.  It has been defying reason.  The week following surgery I was able to function pretty well..  I built a bike for Julie (pictures as soon as it’s back from the painter).  I cooked thanksgiving dinner for a small army of friends.  I made sourdough.  Etc.  But the last 5 days I have been useless..  I’ve hardly been able to get out of bed.  I think I may have been a little cavalier about how fast I could get back to regular life, and I suffered for it.   To find out that “regular life” was not, in fact, what was waiting for me right on the other side of recovery didn’t help, I’m sure.  I’ve been prescribed two baths a day..  to relax my ass muscles.

I’m not sure how bad the news actually is.  On a microscopic level, cancer is not detectable (short of happening to biopsy THAT cell).  Even if they hadn’t found any living cancer in the tumor they removed, there would have been no guarantee that I didn’t have cancer elsewhere.  Finding the used up, spent remnants of living cancer simply underscores the very realistic need to be VIGILANT going forward.  For the next five years or so, I’ll never be more than a month away from my next exam, and if they find ANYTHING, they’ll rush me to surgery.  While this isn’t the fairy tale ending that we though we were getting, it isn’t the END of the world.. and in fact has more of the gray shades of reality that make the world the beautiful and uncertain place it is.  La la.

All I want to do is work in my shop.  I’ve got bikes to build, damnit.  The inability lately to do that has honestly been much harder to take than the uncertainty of the prognosis.

More soon.

Well, shit.

It was an amazing thanksgiving.  We had a wonderful mix of people joining us, and we ate good food.

So very much to be thankful for.

But, I spoke to Alberto this afternoon and there has been a hiccup.  When the surgeon looked at the pathology slides (which he was going to do that following monday..  I never heard from him and assumed all was well), he found what they’re calling “viable” cancer cells.  While the margins around the tumor were clean, he doesn’t feel convinced that he got everything.  Because of the random scattering of the cells in the tumor, he can’t rule out individual cells OUTSIDE the section they removed..  feels it’s possible that the margins are clean just because they didn’t happen to hit anything.

Why didn’t they call me right away?  It’s a good question..  They didn’t want to ruin my thanksgiving, and felt that it wouldn’t change anything anyway.

The discomfort from the surgery is really hanging on.  Naturally it is quite painful to take a shit, but it also seems to be messing with my general digestive happiness.  Opiates help, but I don’t like taking them because it makes it hard to work (vicodin and milling machines are maybe not a smart combination). The discomfort has felt worth it in the context of things.  Now it’s just pissing me off.

What’s next.  The surgeon’s immediate opinion was that we need to amputate.  Alberto wants to avoid this at all costs.  He is recommending that we go somewhat experimental.  Avastin is a pretty new drug that has proven effective at slowing the demise in people with metastatic cancer.  It stops your body from being able to generate capillaries and, in doing so, starves the cancer.. (pedestrian understanding..  those docs out there reading this, forgive me).  It hasn’t been tested in cancer in the early stages, but he feels that it might be effective.  So..  add a drug to the regimen for the next four months or so, and resign myself to CONSTANT checkups.  Forever.  Or a shit bag (and the shit bag doesn’t seem to be any sort of guarantee that there isn’t cancer elsewhere..)

I’m frustrated.  I had been getting pretty charged up about the next few months.  Planning to go to NAHBS.  Planning what bikes I’d be taking.  Planning on having good long work weeks..  and most of all, planning to be healthy, and stop being poked and prodded.  One phone call, and it’s a new reality.

Oh well.