the first week

Day 1 – Monday, November 13, 2006
With Amelie and my parents, I arrived at Norris Comprehensive Care Cancer Center at 7:30am. Dr Quinn, my oncologist, had put me at the head of the line, and while I felt bad knowing that there were more than a dozen people who would be sitting in the waiting room even longer throughout the day because of my priviledged acces, my guilt only penetrates so far.

The choices were bleak, and there was insufficient data to make a rational decision. I have non-seminomatous germ cell cancer that has spread to “non-pulmonary visceral sites”, which places me in a not-too-euphamistically named “poor” prognosis category. The outcome for this group is maybe not much better than flipping a coin when treated with the standard of care, BEP (bleomycin, etoposide, cisplatin (the “P” standing for the platinum in the latter)). Because these clearly aren’t acceptable numbers, there are lots of people around the world trying to find a more effective treatment. Thus far, these efforts have not been coordinated and systematized, and there have been few head-to-head randomized controlled trials comparing different regimens. Here at Norris, Dr Quinn has experience with POMB-ACE, which is a very intense regimen consisting of all of the ingredients of BEP, but in greater doses, plus some other chemotherapy drugs, for 16 weeks instead of 12. The toxicity is higher, with the scariest prospect being an increased risk (from 5% with BEP to 10% with POMB-ACE) of developing peripheral neuropathy. POMB-ACE has been shown elsewhere to be “non-inferior” to BEP treatment in terms of curing the cancer, but there is no published data to support an assertion that it is superior. In Dr Quinn’s experience, however, with between 30-40 patients on POMB-ACE, he has seen a 5-year survival rate of 70%, as opposed to only 40% with BEP.

It was yet another surreal situation. My parents, Amelie, and I were being asked to weigh the evidence, connect with our collective gut feelings, and make a decision post haste, because I would be starting immediately. We circled the couches in the waiting room to confer, which apparently pissed off the powers that be because we were offered an empty office in which to continue the drama. Pulling on all the strings we had, we conferred with the stars at UCSF and at Stanford, who did some calling of their own, and who came down more or less leaning toward POMB-ACE, despite it not being the standard of care at their own institutions. In the end, it was an analogy of my father’s that helped to pull together my own frayed ends of logic. We gotta hit this thing hard, hit it out of the goddamn park. I’m young, otherwise healthy, surrounded by support, and at a world-class institution. The risks of toxicity are there, and scary, but the possible jump in prognosis with the more intense regimen is just too big to ignore. Horribly enough, survival, not side effects, have to be the primary focus around here.

While this is not a high “level of evidence” to be acting upon, I feel confident about it being a good decision. Of course, nobody will ever know.

We told Quinn of our decision, and then proceeded to admitting, where we waited, and waited, and waited for a room, for hours upon hours, with knotted stomachs, snotty faces, and uncontrollable sighing. I didn’t get put in my room until around 4pm, the IV didn’t get started until 7, and then I had to wait around, peeing out saline and trying not to lose my mind before the chemo finally arrived at 11:30pm. It was a moment I will never forget, as I looked into my mother’s eyes, and she sang Joe Cocker’s “You are so beautiful”, as the first of the life giving poison slipped into my veins.

Day 2 - Tuesday
Not a moment free! There was a parade of medical students, five at a time, from the moment that they got out of their review session at noon until 6pm. I’ve got to set up a blog and get people to read it before they come in, so I don’t have to repeat myself ad nauseum. But it is great to be surrounded by so much love and support. Taking a stroll with My Buddy the IV machine out to the quad is to invite neck rubs and a crowd of people forming around. Having chosen this relatively unique treatment regimen means that it will be much less easy to move my treatment up north if I feel like I need to, and this was one of the factors that made me hesitant about it. But now that I am here for the duration, I can reflect on the positives of the situation, and it is wonderful to have hundreds of people around, all the time, to keep me distracted and amused

Day 3 - Wednesday
After a long night of hiccups with thorazine and baclofan to try to stave them off (with unimpressive results), being awoken and reawoken for fluid intake/output and various drugs, and having to reset my IV pump every time I did fall asleep and bent my arm in the wrong way, it was a groggy morning.
It was time to put in the PICC line. In my second-year med student mind, there is only one association that I have mamaged to make with PICC lines, which is that they equal hospital-acquired infections. I required a fair bit of convincing before agreeing to it. Before I went down to the PICC nurse, I was hiccupping, and they decided to give me a “double dose” (whatever that means) of IV thorazine, on top of whatever thorazine and baclofam I had already consumed in pill form. It was a pretty miserable experience, though I am not sure why. I was just so loopy and floppy and sleepy that I couldn’t keep my shit together, but I also couldn’t sleep. I remember the PICC nurse saying that they should shoot everyone up with thorazine before sending them to her, because she had never had such a compliant patient. My delirium lasted a good four hours, but it was not a fun kind of stoned. The PICC line is great, though – I have full mobility of my arm because it’s inserted above my elbow instead of right in it, it doesn’t ache like the normal lines, and my IV machine doesn’t need to be babied in order to function.
The time that I spend in front of this keyboard is pretty much all of the “free” time that I have had. There is so much media in this room that I am definitely not going to get to until I return home – books, music, recorded books, movies.

Thursday

I weigh 179lbs! That’s 30 more than usual. My belly is inflated beyond belief, with the 15lbs of tumor matched by three and a half days of poop and liters of saline that hasn’t found its way out yet. They are pumping me up fast with saline, because we’re dropping the bomb on the nasties in an hour: cisplatin’s gonna ‘splat-em. And me, apparently. So far, I’ve completely escaped from nausea, but I don’t know how much longer that is going to last.
The day went OK, with the only real problem being from the laxatives which made me crampy and gassy. The chemo was like being on lots of coffee and wanting to sleep and walk and fart and lie down and talk and do tai chi and eat and sit all at once.
It was almost as emotional to finish the first round of chemo as it had been to start it. While this one will go better and easier than all the rest, at least I know a little of what to expect. I do have to say that there are lots of dropped balls around here, always with plausible explanations (one of the nurses didn’t show up for work, the IV didn’t get changed because the timing worked out right at the changing of the shift, etc), but nonetheless inconsistent results. There have been too many times when I have had to cajole for more pain meds.

Friday
An MRI had been ordered to check for the possibility of brain metastases, and since Norris doesn’t have an MRI machine, it had to happen 200 yards away at University Hospital, which apparently required the use of an ambulance and two EMTs. Just how inefficient can we make this system? I honestly could have walked. The whole MRI experience was super trippy, with loud techno sci-fi sound effects mingling with Sting piped in over headphones, and don’t move! as the machine clunks and bumps its way to ultra-precision imaging. Makes no sense. But the results are back and clear, well, kind of – there was an incidental finding of an AVM, which is just not something that I want to think about right now. Ugh. Another long day of waiting, this time to be discharged. Norris is not a very organized place.
Being at home, without electronic beeping pumping dog of an IV machine following me around everywhere, is fantastic. Sleep when I want to, if I can, and at least have the option of eating great food, even if I can’t necessarily get it down.
This feeling is most like coming down after acid, cracked out day 2 without having had a fun day 1 to vibrate. Just the willies, the non-specifics. Am I asleep or not? Apparently not, since I am typing. But not for long.