28 April 2007

I am sitting in the backyard of my parents’ house, luxuriating in the soft northern California springtime, and shaking off six very long days in the hospital. It fades mostly into a blur – at least there’s one welcome side effect to all the drugs. Stanford was a more pleasant hospital to be inpatient, despite not having my own room – there was an easily-accessible, private, and stunning garden, and the IV pumps were newer, quieter, and less prone to dusk-to-dawn squawking. Plus the night nurses were cute. Ahem. Hey, any bit helps.

The come-down has been easier so far, too. While the chemo obviously has taken its toll – the screaming in my head has amped up a few notches again, I did spend most of yesterday staring at the wall and fighting rather rivolting blurp-like concoctions, and it did take a rather large dose of sleep meds to overcome the steriods last night – my overall state of being is relatively good. My blood counts haven’t dropped to the same extent as last time, which means that I will be less easily tired, less easily injured, and less immunocompromised, all of which will make it much easier to enjoy the next couple of weeks before heading off to Indiana.

Sitting around is narcotic in and of itself, but it is no good for me. I find that I have to remind myself that just because life has taken a detour doesn’t meen I have to be stuck in a meaningless eddy. The nurse asks: “Are you a student?” – “Well, kind of yes, well, I WAS a student, no actually, I still am, really. I mean…”. Conversations like these remind me that student-ness is as much a state of mind as one of fact, and that I want to remain determined throughout this business to suck this cancer dry for all it can teach me. It takes a concerted effort, though, to remain engaged with the details of what’s going on, because I feel like I have spend so much time telling people about what is happening on a day-to-day level that I get sick of even thinking about my illness. Often by the time I am finally alone and clearheaded enough to sit down and dedicate some time to investigating on a more medico-scientific level, I find it hard not to indulge in more immediate pleasures or obligations. Blogging seems to fall somewhere in-between, but one of the good results of the pressure to produce is that I am provded a forum in which to reflect on what I am doing with my time, and decide what I want to do about it.

The Plan

This entry is going to be a dry one, since I am still resonating about what it all means. Plus, I've only got another 41 hours of feeling human left, and it is a beautiful day!

We have made a choice, and believe it or not, we are going to Indiana! It was a difficult decision to make, but I hope, the right one. The team in Indiana, led by Dr Einhorn, was made famous by treating Lance Armstrong, and has done more of this than anyone in the world, including Memorial Sloan Kettering in New York. The only place on the west coast that has any experience with treating advanced germ cell tumors is City of Hope outside of LA, but the doctor who would be in charge will be out of town for another three weeks, and I don't have that long. Both the team in NY and the team in Indiana recommended high dose chemotherapy with autologous stem cell transplant. I poured over the published and soon-to-be published results from both teams with the help of my mother and my uncle, who is an Evidence-Based Medicine researcher. After weighing many variables, we decided to go with the data and have it done at Indiana. A ~60-80% cure rate beats ~50%, especially when the sample size is 2-3 times as big (depending on stratification).

The first month will actually be done inpatient at Stanford, where I will get one cycle of standard dose vinblastine/ifosfamide/cisplatin, starting this Friday and lasting five days. The point of this is threefold: to hit the cancer immediately, to hit it with something that won't take the insurance company two weeks to approve (seriously!), and to induce my body to pump hematopoietic (blood-producing) stem cells out into my blood, so that they can be collected and stored away for the future. I will be going to Indiana on May 13th for the stem cell "harvest" and the first of two rounds of high dose carboplatin and etoposide, after which my stem cells will be reinfused to reconstitute my immune system, which will have been decimated by the chemo. The dosage that they will be giving me is something like four times what I have received in the past, which I can tell you fills me with joy. I return to California around June 1st, and then head back to Indiana on June 13th for the second round. After recovering for 4-6 weeks, I will likely need surgery to remove any residual masses, but if the past month is any indication, that decision will not be a clear one.

There are other reasons to be in Indiana as well. I will be severely immunocompromised, and keeping my environment as clean as possible will be much easier in Indiana than in Manhattan. The overall fun level may be lower, but I am not exactly going to be partying all night long, and can't eat out anyway, so the lower overall stress level is probably more important. My mother, who will be taking care of me, will have an infinitely easier time of it in Indianapolis. For whatever reason the timing is better with Indiana's protocol: it is nice that the first month can be done at home, and also great that even if we go ahead with the surgery, I will likely get back to health in time to start school again where I left off in November.


My new doctor, Larry Einhorn (the only Jew in Indiana?), with Lance Armstrong

staple gun

I am sitting in a hotel room across from the Indiana University Medical Center, waiting for the Ambien to kick in, so it's gonna be brief entry, and may get a litte loopy near the end. The past few days have been a maelstrom of taxis, airports, jets, airports, taxis, hotels, paperwork, and hospitals. Sounds miserable, I know, and a lot of it has not been fun, but some of it has: I blitzed midtown manhattan one night with an old friend, and I did make it, by the skin of my teeth, to my best friend from high school's beautiful wedding in San Francisco, and had a romp across the dance floor and through a very very late night, celebrating LIFE (selected pictures to follow, once I get my camera hooked up here). After one day in Palo Alto, mostly spent apologizing to visiting friends for being less than awake due to the two previous night's festivities, we jetted off to Indiana (of all places!) to continue our marathon quest to leave no stone unturned, and get as many expert opinions as possible in one week.

In brief, the Sloan Kettering people said that I need high dose chemotherapy with stem cell transplant. For a few weeks, they would be giving taxol and ifosfamide while taking blood very frequently to harvest and store the stem cells that float around in our blood, and which can, when re-implanted, reconstitute the hematopoietic (blood-producing) tissue necessary to boost my red cell, white cell, and platelet counts, which will fall dramatically low after the huge doses of carboplatin and etoposide are given. Depending on how well I tolerate the treatment, it either keeps getting worse, or doesn't. Horribly enough, if I respond without too much difficulty, then they give me more to smash it that much harder. I don't think that there is any reason that we wouldn't do the treatment in New York if we lived there. And despite the fact that I LOVE New York City, the incredible rift it would cause my family, the distance from all of my support system except for my mother, the fact that New York City is no place to be immuno-compromised (no subway, no taxis, no bars, no pizza, no museums, no drugs...), plus the enormous expense of relocating for a minimum of six months (and possibly much longer than that, depending on what side of the 50-50 split I'm in), means that I don't think that it is likely to happen there. But their science is the gold standard in these circles, and they have set the bar high. We are also putting together a bit more piecemeal all of our questions and concerns about USC/Norris, City of Hope National Medical Center, UCSF, Indiana, and Stanford, and bouncing all of the minutia around, hoping to come out with a reasoned idea of what to do next. We meet with Einhorn in Indiana tomorrow, and then fly home on Wednesday, and will hopefully be meeting with Srinivas at Stanford that afternoon as soon as the plane lands. How many of these have they done? How many stem cell transplants? How many high-dose chemo regimens? How many of each have been for germ cell tumors? Will the doctor be out of town? Moving hospitals? Who is the backup doctor? How long has that doctor been involved? Which high-dose regimen would they be using? Why that one, and not this one? What is the evidence for us doing this versus that? What could the side effects be? And? Yeah, OK. What else? ugh. And what if that doesn't work? How will you know if it has or hasn't worked? What have you got for us then? And why should we do it that way and not this other way?

Sometimes it is appropriate to go one step at a time, and cross bridges when they need to be crossed, but sometimes that's just baloney. Sometimes, in order to make a good decision NOW, you have to have a long-term vision of where things could go, because inevitably decisions made now will affect the future drastically. I know that there are a lot of squirrily, slippity variables to nail down, so where is the staple gun? And don't tell me you left it at home, because I will fly back across the country to get it. Twice, if need be.

Part IV

In my experience, it is never a good thing when the doctor calls.

The last few days have been extremely difficult. All of the uncertainty that I had about putting my life back together has sunk quickly into obsolescence in the face of new data: my tumor markers are back on the rise. The chemo did not do a complete job. There is definitely live cancer growing, as we speak. An already tense and uncertain time has become more scary, but also more focused as I figure out what to do next. Yesterday I spent all day in the hospital, getting blood tests, meeting with the oncologist, waiting for an ultrasound, then for an MRI, all the while furiously chasing down my medical records, spread between the USC cancer center, USC Family Medicine, USC Radiology, Stanford, and UCSF. I have a CT this afternoon, before flying out on the redeye to an emergency appointment at Memorial Sloan Kettering in New York on Thursday. I may or may not be anywhere in particular between then and my appointment in Indianapolis on Monday. Maybe I will be able to make it to a dear friend's wedding this weekend in San Francisco. And maybe not.

What is next is unclear. "Salvage" chemotherapy, "clinical trials," and other such niceties may await. The currently-accepted dogma seems to be that as long as my tumor markers are above normal, I am "no longer a surgical candidate," although the people in Indiana seem to think that maybe that option is not out.

I am packing now, for an undetermined period of time. It is still cold in New York, but maybe by the time I finally leave, it will be warm. But I could be back in LA next week. Should I unplug my refrigerator? Finally move out from my apartment? Find a subletter? Or just leave it? The last option, for now, is the easiest, and therefore wins.

Emotions are unpredictable these days. I find my psyche trying out various reactions, briefly letting myself feel each, expecting that one or many of them will sink in eventually, and others be quietly retired. I find strength in having gotten this far in such good shape. I am outraged at everything that has gone wrong on many levels, and also understand that no system is perfect. I could keep writing, and will, but I've got too much to do today to get ready. OK. Deep breath. Here we go again.

One year anniversary

It was on the night of April 3, 2006 that I found a lump in my right testicle. The year that followed that horrible night was one that will mark the rest of my life. It was my own personal 9/11. Damage has been done. But the gash in my groin, four puncture marks in my belly, my ringing ears, my tingling fingers and toes, and my scraggly reflection all remind me less of why they appeared than of a more basic fact: I am alive, god dammit! There is no question that it is because of all of your help and love that this year, with all its horrors, has left as few scars as it has.

The content of yesterday’s meeting with Dr Skinner, the surgeon at USC, came as a complete and total surprise. I had thought that I had driven down to LA in order to hear Skinner’s surgical plan, and if not compare it to the one presented to me at Stanford days before, then at least to evaluate the interest, investment, and preparation of each team, in order to finally make a choice as to who to let slice me up. It was quite shocking, then, when Skinner told me that he did not think that I should have surgery at all. In fact, this famous and experienced surgeon told me that he didn’t want to operate because the only way that he could be confident that he had removed all of the tumor would be to REMOVE my bladder and rectum in the process. And considering that the likelihood is low that there is any live or quiescent tumor still hanging around, the collateral damage would clearly be unacceptable. The option of going in and getting everything that could be removed easily was also deemed a non-starter, since any future surgery would be made much more difficult by the resulting scar tissue. So the plan that he recommended is one of long-term surveillance. There apparently is something like an 80% chance (though nobody really knows) that all that gunk in there is dead anyway, and that any surgery would have been superfluous. There is a very small chance that there is still live tumor which somehow survived the chemo, which will be monitored with frequent blood tests; additionally, there is something like a 20% chance that there is quiescent teratoma hanging out, which could sit there forever, or grow slowly, or undergo “malignant degeneration” and turn nasty again. This will be followed by frequent CTs, and if there is any growth, they would at that point go in and do the surgery that they needed to do to remove the mass. This approach being radically different from Stanford’s, we asked for a referral for a third opinion, and were directed to a team in Indiana, who according to Skinner are the only people with more experience than him at treating testicular cancer. We will be flying out there in a few weeks. In the meantime, though, the thorough explanation I got from Skinner has convinced me not to do the surgery that we had tentatively scheduled for next week at Stanford.

This all seems like bad news, except it isn’t, exactly. After stumbling around in a daze for a while, I realized with the help of some wise friends that even if I went through with the surgery, there would be no guarantee that all of the tumor had actually been removed, and I would still have to be going in for regular screening tests. This way, the only real difference to my daily life is that I don’t have to undergo a gigantic, dangerous, painful, and disfiguring surgery. While the risk of recurrence may be higher because the bulk of the mass didn’t get taken out, that risk is unknowable to begin with, and remains just as vague. The axe hanging over my head will not be any more or less scary.

A long story made short is that things are so ugly in there that… I can just go back to my life?! Huh?! You mean I live in LA again? (Oh, no!) That all of a sudden, I am expected to be an adult again? To collect quarters for laundry, to cook for one, and to wash the lonely dish by hand? I sit in (what apparently is) my apartment, alone, and realize that this last eighteen hours is the longest time that I have spent by myself in a year and a half. What does this mean for the even closer relationship that I have with my parents, and for the many relationships, new and old, that I have with friends in the Bay Area? Who am I, after all of this?

In this empty, quiet apartment, I hope to have the space to find out.

Maui Pix

A month of recuperation

It has now been more than a month since my last chemotherapy treatment, and the once-incessant reminders of having been poisoned – crazymaking itchyness, neuropathic hand pain, a constantly runny nose, etc, etc, etc – have almost completely dissappeared. I am slowly getting used to my (relatively) hairless reflection, and am very much enjoying only shaving once a week. The most obvious physical feature that remains is my pot belly, which is about equal parts residual tumor mass and chub from sitting on my butt and eating rich food. I prefer to think of it as a wise plan to stock up on resources before my upcoming surgery, which will be a doozy.

Here’s the scoop: there is still a bunch of gunk in there, some draped over the top of the liver, some in the center of the liver where all the lobes and the vessels come together, a big glob down at the base of the pelvis between my rectum and bladder and up around my large intestine, and maybe some little bits scattered around along the posterior body wall. It isn’t clear from the CT scan who much of it is necrotic tumor, already killed off by the chemo but not yet cleared from my body, and how much of it is live tumor or teratoma, which could hang out for years before becoming a problem. Everyone agrees, though, that it needs to come out. The surgery will be long, difficult, and there are many things that could go wrong. To list them all would be unnecessarily terrifying.

With this knowledge, I have been maybe more than a little of a pain in the butt to my doctors, trying to evaluate who is most qualified to turn me inside out. One would think that it shouldn’t be too hard to find out how many surgeries of a particular kind a given surgeon as performed, but this turns out to be wishful thinking. As if that isn’t frustrating enough, it turns out that nobody has actually done a surgery like this before! Apparently, the locations of these tumors is unique in this type of disease. Normally, it spreads within the lymphatic system from the testis to the retroperitoneal lymph nodes, then to the hilar (base of the lung) lymph nodes, and then finally into the bloodstream, where it is disseminated all over the body. This is not what happened in my case: there was nothing found at the hilar lymph nodes, and nothing within my brain or any other organs, where it “should” have been found. Confusingly, though, there are tumors not within organs but ON their external surfaces, within my abdominal cavity. How did they get there? While nobody knows for sure, the signs are pointing to some of the lymphatic fluid having leaked out of an affected lymph node or vessel during the retroperitoneal lymph node dissection (RPLND) which I had done at UCSF last June. Apparently when the surgeon who performed that surgery found out, he was devastated. This is such a unique case that it has been presented a number of times at Grand Rounds both at Stanford and at USC/Norris, and should be written up as a case report when it’s over. My oncologist at Norris told me that his goal was to get me through this so that I could write up the case report myself, which I agreed to, providing that I get first authorship, and have him, the Stanford oncologist, and the UCSF surgeon as co-authors. Look out, JAMA.

It continues to be very difficult to decide where to get care. I am not yet sure whether it will take place at Stanford or at USC/Norris, and I have a couple of appointments over the next week to finally nail this down. At this point, it seems that both teams are equally qualified, insofar as the almost non-existent data shows. Again I am stuck basing a potentially life-changing decision on anecdote and opinion, which is quite disturbing.

In the meantime, I have been obstinately having a blast. Traveling with a wonderful friend, Maui was lovely and luscious and synaesthetic – the air danced, the water sang, the mountain shimmered, the lava spoke, the jungle felt happy. Six days were packed with adventure, partying, melting relaxation, and welcoming locals. We swam with giant sea turtles, saw both sunrise and sunset from the summit of ten thousand foot Haleakala, and weathered a fantastic rainstorm while camping on the edge of a cliff past Hana.

Refusing to let a return to the mainland slow me down, I then drove up to Lake Tahoe to spend a debaucherous weekend with reunited members of the UC Berkeley Ski Team. I did not get a single day of skiing in last year, and this was of course the first time this year that I have been able to get up to the mountains. Having been practically completely stationary for five months and still recovering from having my red blood cell count cut in half by the chemo, I was not at the peak of my skiing form, to say the least. But every burning turn, every winded pause, with trembling legs threatening to give out, was cause for celebration, and I spent the entire weekend with a stupid grin plastered across my face.