It's over! Let it begin!

I've been studying 12h a day for three months. No listening to music in the car, only audio reviews. There are post-its all over my apartment: the brachial plexus on the bathroom mirror, the Circle of Willis above the toilet paper, and the basal ganglia next to the coffee maker. I have a whiteboard covered with ridiculous mnemonics for memorizing inane but testable details. I ended up making 6800 virtual flashcards at last count - far too many to use for their ostensible purpose, of course, but the act of making them was valuable in and of itself. I subsisted largely on coffee and chocolate, occasionally defrosting treasures from my mother's kitchen.

The United States Medical Licensing Examination Step 1 is a big deal: 6h of trick multiple choice questions determine more than any other measure whether or not one gets interviewed at a residency program. Doing well means a much greater chance at getting to go somewhere I want to go for residency, and doing something that I want to do; doing poorly means that I could conceivably just get put somewhere, to become a kind of doctor I didn't really want to be. This exam has been intimidating me for over three and a half years now, and I am overjoyed at being healthy enough to have taken it on. I won't know for six weeks how well I did, but for the moment, it doesn't matter: it's over!

And now the real work begins! If the experience of my friends is to be believed, starting in January I get to pay $50k a year for the chance to be scolded for being inefficient, dangerous, and in the way. The next three years (at least) will largely be spent in sleep deficit. It will also be a period of relative social isolation. Most of the people I used to know in LA have graduated and left town. I will be on rotations with a small subset of an already small and isolated social network, and everybody is going to be stressed out in the exact same way, with nothing else to talk about. For the past few years, I've been the center of an incredibly deep and wide spring of love and support, and I have gotten used to being told by everyone around me how great I am. This coming period will be a test of my ability to maintain motivation and self-respect without the constant pats on the back that I have become so used to.

I spent today walking around the hospital with one of the Medical Student Educators, getting an orientation to clinical rotations. I have to say that despite the above, I'm pretty excited about all of this. Even though I am more dangerous now than I ever have been or ever will be, my badge opens doors with big scary signs reading "Authorized Personnel Only", I get waved to the side and told to walk around instead of through the metal detector, and I get handed tiny babies straight out of the oven. These are but insignificant indications of the humbling amount of responsibility and trust that is being placed in me. However painful the process, I realize that I am about to get an incredibly valuable education.

What I've been doing since surgery

Rest assured, no news has been Very Good News. It was a very slow recovery... until it wasn't. At a certain point I started to feel exponentially better each day, and pretty soon it became clear that I was feeling so fantastic that it was time to get back to work!

I am currently studying 12+ hours a day for the national board exam, which I take in a month. It's a big deal, and I need to focus more than I ever have before. Because of the way the timing has worked out, I have a little more time to prepare for this test than if I had not gotten sick again, which is a very good thing. My education has been quite fragmented, and I have even more loose ends and gaping holes in my knowledge than your average medical student, so I am happy to have more time to review. I have also been taking advantage of the flexibility my schedule has offered, enjoying this time of health and freedom as much as I can, considering I have to be studying full time. Here's what it has looked like! (now back to it...kidneys!)

pictures

For those of you who missed out on the gory details, here is a link to my parents' blog, where they posted the intra-operative pictures. Completely awesome if you are into that kind of thing; totally gross if you aren't! Fair warning!

Oscillon

You know that moment when you finally admit to yourself that the little scratchiness in the back of your throat isn't allergies, and it isn't because the air is dry, it's that you are about to come down with a cold? I had one of those moments at about 5am the morning of what was supposed to be my triumphant flight home to California, except that it wasn't a lame cold I had come down with. I had spent the night drenched in sweats and shaking with chills, hoping that it was all just another of the many strange side effects from the painkillers and other junk I was on. But when it didn't let up for hours on end, it was clear that these were Not Good Signs.

It was lucky that we showed up to the Sloan-Kettering Urgent Care center at 6:30am, because by a few hours later, the place was overflowing. Miserable people lined the hallways, some of their families sitting next to them on their cots, or on the floor. Such was the scene at one of the most prestigious hospitals in the world. How can this be?

Once the diarrhea started in earnest, it was pretty clear that there was no possible way that we were getting on a plane that day. And when that smell hit, there was no mistaking it: A Clostridium difficile infection. This is a pathogenic bacterium that most of us are colonized with, but which is kept in check by the commensal bugs which normally dominate. When someone who isn't in tip-top shape anyway starts taking antibiotics for some other reason, there is always a risk that the antibiotics will kill off the good gut bacteria as unintended collateral damage, leaving the door wide open for CDiff, as it is (un)affectionately known, to set up camp. And there I was, having spent the past few days legitimately, if gently, up and about enjoying New York City, once again flattened by pain and discomfort.

In more tormented moments, I felt like the rug had been pulled out from under my feet just as I had managed to stand up. In more thoughtful moments, my understanding of the vibrational nature of the universe was reinforced: The greater oscillation between sickness and health is made up of many smaller ups and downs. This was one of those small dips in an otherwise upward-sloping curve. I was going to be fine, whatever misery the little bastards managed to dish out.

We finally got on a plane last Wednesday, and I have been recovering in baby steps here in Palo Alto. I'm mostly with it these days, though I do sleep a lot, and can't be up and about for very long before I need to lie down for a few minutes. Every day is better, and I am slowly adding to a list of the things that I want to accomplish this summer before jumping into studying for the national board exams, which I will have to take sometime before beginning third year of medical school in January. I'm not sure how long I will be in Palo Alto before heading back to LA. Is it better to enjoy being with my parents, and have their support as I hunker down for the most intense studying of my life, or will I be more sane if I re-establish some independence, and be better able to study around my peers? In any case, I will definitely be taking it easy at first, as I transition out of being sick and back into being productive. There are many deep breaths to be taken, many pools to float in, many good meals to indulge (I haven't weighed 142lbs since junior year of high school!), and much catching up to do - with friends, with family, and with myself.

Success!

This is the news that we all have been waiting for!

After chopping through literally pounds of tissue extracted from my abdomen, the pathologists finally turned in their report to my oncologist, who meekly and without drama reported this afternoon that he saw no need for any further chemotherapy. The great majority of what came out was extremely dense scar tissue that required multiple changes of scalpel blades just to cut a single slice through; the rest of the tissue was almost exclusively teratoma, with a single microscopic nest of malignant cells that was completely encased within a capsule of scar tissue. This means that the pathologists are very confident that the surgeons didn't leave anything dangerous behind.

This is all an immense relief, of course! - but somehow, not unexpected. I've always known that this whole cancer thing was just a phase, and have been annoyed each time the phase prolongs itself. Move on, already! Well, it really looks like it finally has. Surgery is very different from chemotherapy. The literal physical removal of anything suspicious makes possible a different kind of hope. It can't come back, because it no longer exists!

I will probably be in New York for another week and a half. It will be a few more days before I can imagine going through the rigamarole of transcontinental travel, and I have to wait until next Wednesday for a minor outpatient surgery to remove the port that was placed in case intraperitoneal chemotherapy had been necessary. In the meantime, I am celebrating as much as my tender belly will allow.

Back in Business!

I realize that the tone of my account of the past few days differs quite a lot from that of my parents', but this fact just shows once again that we all experience the world differently. It also clearly demonstrates the fact that I am on drugs.

Considering the intensity of the surgery I just went through, I would say that the past few days have gone stunningly well. While it did take too long to find the right combination and dosage of painkillers so that I could be comfortable, ANY time at all would have been too long: pain just sucks for everyone involved, there's no way to gloss over it. In some ways it might be worse for the caregivers than the patient, when the patient doesn't feel any guilt for not being able to make it better, and when he often doesn't remember most of the pain anyway.

Same with the Fever of Unknown Origin. It definitely sucks to be soaking through pillowcase after pillowcase, but while they have to watch me moan, I get to have some pretty amazing hallucinations and other extra-ordinary experiences. For instance, I recently had the pleasure of serving as a medium via whom the spirits of some close family friends communed with their respective recently-deceased relatives. Now folks, all I am saying here is that's what it felt like when I woke up, but nonetheless, it was a pretty interesting experience that I'll bet made my afternoon quite different from everyone else's.

Personally, I think that it's the previously-diagnosed minor pneumonia that is causing the fevers, and that the antibiotics that I am already on will shortly eliminate this worry. In the meantime, my body is bouncing back amazingly well from an incredibly extensive surgery, especially considering that I just lost my spleen, which while not strictly necessary, would under normal circumstances be participating in the current fight with this minor pneumonia, a not-uncommon post-surgical outcome. I am in negligible pain with the help of a relatively small dose of long-acting MSContin, with no need so far to take the available fast-acting painkiller. I walked about a mile and a half today, absolutely smoking the competition, if I do say so myself. My cough has disappeared, I am up to 2750ml on the Inspirometer, am enjoying normal food, had a real bowel movement, and spent the day alert and chatting with old friends.

Today was an amazingly good day. Tomorrow will be even better!

Up to the minute info

For updates on how I'm doing while I am hospitalized, please see:
LiliensteinFamilyBlog.blogspot.com

Live starting in a few hours!

As I walk with my family through the New York morning on my way to the hospital, I thank you all for your well wishes and love. They are already being put to good use.

(man, am I HUNGRY!)

Optimism

I am in New York a few days before my surgery at Memorial Sloan Kettering. This is it! A shot at being done with this saga once and for all. It will be a massive surgery, requiring the very best liver, gyn/onc, and urological surgeons, which is why I am here in New York. As always, I am planning on the best possible outcome, and stand ready to roll with whatever punches may fall.

I write from an apartment with an oblique view of the East River, listening to the sounds of the city wafting through the open windows on a soft breeze. In between various doctors appointments, I have been thoroughly enjoying New York City with family and old friends. After a truly incredible meal last night at Marea, an amazing seafood restaurant on Central Park South, today I am on a clear liquid diet. This entry is being written under time pressure, because my “bowel prep” is about to kick in. It’s going to be an eventful evening in the bathroom!

A couple of weeks ago I completed by 6th and last round of chemotherapy in LA, and drove up to my parents’ place in Palo Alto to finish recovering amidst a flurry of friends and monumental meals. My mom and I then drove up to Lake Tahoe for a week of quiet, fresh air, kayaking, hiking, and sailing. As I have been celebrating the end of chemotherapy, I also have been preparing myself for the next phase, which will be very different. For me, chemo is less intimidating than surgery, because submitting to a few days of discomfort every other week is less threatening than imagining all of the possible scary outcomes of a major surgery. In some ways, though, chemotherapy has helped me prepare for what is to come.

The damage done to my hearing by wave after wave of platinum-containing drugs has already permanently altered my body and my life, and having had to come to terms with that reality has given me practice at accepting what I cannot change. I know that recovery from tomorrow’s surgery will be slow and difficult, and there is a chance that my life will have to be lived very differently after the surgery.

The days following chemotherapy were uncomfortable, despite fancy drugs, attendant and generous family and friends, and abundant resources. But as with anything, it was not a purely negative experience. I have learned that every single moment, we are each presented with a choice of what in our environment or in our minds to focus on. My hands may have been made of ice-cold needles, but the need to have them warmed led to my rediscovery of how much I love café mochas (note: Green & Black’s cocoa is the way to go). I have been unable to study, but I had time to help my tomatoes fight the good fight against their inchworm assailants. An entire day of nauseous hiccups was spent watching the sheer curtains dance in the breeze. The foul taste in my mouth was clearly linked to my hilariously yellow tongue. Immobile hours were spent under amazingly soft sheets. I became dependent on my parents as no 29 year old non-Italian male expects to be, and in the process have had an otherwise inconceivable opportunity to enjoy their company in the prime of their lives. I have said goodbye to many former classmates as they move on with their careers, but I have had the time to reconnect with many old friends.

Earlier in my life, I felt plagued by opportunity. It was painful to accept that making any choice necessitates giving up on all of the other choices. I recently realized that the equation is balanced: each setback also creates new opportunities.

3.6

The CT and blood work that I mentioned in my last post ended up showing essentially no change, which kept limbo-land as the status quo. My two main doctors are on opposite coasts in the best of circumstances, and on opposite sides of the globe quite frequently, and it has been excruciatingly frustrating and frankly dangerous that the lack of a national electronic medical record and the existence of HIPAA legislation prevent my doctors from being able to instantly access my scans from anywhere in the world. Instead, CDs get FedExed, then lost or buried under piles of other mail, then not looked at because it is the weekend, or not until a week later because the recipient is lecturing in Dublin or Chengdu. The anxiety and delay caused by this state of affairs is totally unacceptable.

Three weeks after my scans were done, the team in New York finally looked at them and got back to my doctor in California. To my great relief, they agreed that things looked stable, and that they would proceed to schedule the surgery for June 17th. Since there was no communication about whether or not there needed to be any more chemotherapy between now and then, my subconscious decided that this meant that the answer was "no", and so I proceeded to have a terrifically fun, celebratory long weekend. Alas, I find that I am writing this blog a short night's sleep away from Round 6. I still don't understand why it took so long for this decision to be reached and/or communicated, but it has been very destabilizing. Future doctors of the world, hear me: your patients need you to be focused on the rhythms of their lives. It is the nature of our profession that the rhythms of our lives must be secondary.

Despite finally having a surgery date, there are still many unknowns and what-ifs. If my tumor markers go up despite continued chemo, the surgeons in NY are unlikely to agree to proceed, just like what happened back in March. So then do I wait weeks for them to come up with a new plan? Or do I give up on them entirely, declare their approach proven wrong, write off the collateral damage done by the chemotherapy and the delay, and fly to Indiana, where there is a respected surgeon who is willing to do a different surgery that I am less confident will work?

It is a constant struggle to remain present in the moment, and yet also to remain proactively and effectively engaged.

The mountain of work that I have to get done before beginning 3rd year of medical school looming as large as always, and the time that I have to complete it growing ever shorter with each round of chemo, my anxiety level about being able to pull off this increasingly superhuman feat of concentration under extreme circumstances gradually reached a breaking point. I recently learned from the school administration that I had a third option besides either compromising both my health and my academic performance trying to get it all done while getting cured of cancer, or taking a third entire year off from medical school: I can give myself until January to get well and take all of my exams, and then rejoin at that point. This has been a huge weight off of my shoulders.

It took me a while to realize why I have been so focused on not taking any more time off: In normal everyday life, I know that if I delay doing something once, it is not very likely to happen, and if I delay doing it a second or third time, it usually means that I didn't want to do it in the first place and have been looking for an excuse not to do it at all. I use this self-knowledge to get my otherwise lazy ass out of bed and on to business. While this may be appropriate for goading myself into taking out the garbage or filling out financial aid paperwork, I realized that I was inappropriately applying this logic to this current situation as well. Having already taken so much time off of school, I was giving myself a hard time because I felt like taking any more time to get well was a sign of laziness. Once I realized that this logic was completely inapplicable to the current situation which is quite out of my control, it became much easier to let go, and accept a more sane (and safe) course of action.

3.4

April passed in a new kind of rhythm, each cycle a bit slower than the last. It starts with one long day in the hospital every other Wednesday, mostly feeling decent until a slide down into Yuckville around sunset. Two or three days are spent mercifully sleeping, and otherwise coping with a body in mild revolt. Keeping an even keel depends on being diligent about eating small but frequent meals, despite suspect bowels, a truly foul taste in my mouth, salivary glands that scream in pain with each first bite. My mother toils endlessly in the kitchen, her culinary creativity working in full synergy with her ancient mother's instincts to fill every appetite's last nook and cranny. Bacon in bed! Lemon tart, you said? I run gallons of water down the drain waiting for it to get warm enough for me to bear putting my hands in, and can almost see the icy pins and needles pierce through my skin as I knead them out of my fingertips. The weekend passes with many a nap, and a few short outings that leave me exhausted but happy.

Monday morning rolls around, and I am back to school! ... kind of. My attention waxes and wanes throughout the morning, and I am thoroughly exhausted by noon. While my colleagues hunker down in libraries and coffee shops preparing for the upcoming national board exams, I spend my afternoons and evenings in sequential pre-bed naps. By the end of the school week, I am really feeling quite normal again, and then I have the conundrum of whether to spend my energy cavorting or studying. As time goes on, I have found it increasingly difficult to focus. While I am happy to be learning when I can, time spent sleeping or enjoying the springtime air is time not spent studying, and week by week I watch as my classmates slowly pull away. I'm on a different schedule, of course, and there will be time for catch-up at some point. I just have to remind myself every now and then.

Medical news is just as vague and confusing and scary as ever. After an initially spectacular response to my new chemo regimen, my tumor markers have been at a plateau for four weeks in a row now. It's not entirely clear why, but a number of possibilities exist. We may have created a chemo-resistant clone. Alternatively, there always were two populations, one sensitive and one resistant, and we've killed off the sensitive one and are now looking at the resistant one. Another interpretation is that we have a vascular access problem; that is, the chemo has successfully killed off the tumor that it could easily get at via the blood supply, leaving some tumor cells alive that would be killed off by the chemo if we could just deliver it to them (Nerds: We are looking into the possibility of adding Avastin (VEGF-receptor blocker)). The truth may be a combination of these things, or, of course, none of the above. I have another CT and blood draw this Thursday which will add another couple crumbs of information, and lead to a new best guess about what to do next.

3.1

As predicted! It was a long, boring day in the hospital, made much nicer by legions of friends cutting class, on lunch break, or taking time away from their real jobs to stop by and keep me company. The IV Benadryl helped, too. My mother and father spent the day in the hospital with me, and mom stayed for the rest of the week, filling my fridge with food and making everything easy.

The next day was Match Day, which is when all of the current 4th year medical students at medical schools across the country open envelopes all at the same time to find out what kind of doctor they are going to be, and where they are spending the next three to seven years of their lives. It is a sadistic institution, one among many involved in the making of an American doctor. It was an extremely emotional day for all of my fourth-year friends, and while alien diaphragmatic contractions kept me at home and away from the Agony and the Ecstasy, it was emotional for me, too. I began medical school with all of these people who will officially be "doctors" in a month and a half. Together we took our first deep breaths of formaldehyde-laden air before cutting into our cadavers. I watched all of these people flail with stethoscopes and tuning forks. For four years we've bitched and moaned together about everything that was wrong with the curriculum, our fellow students, the hospital, and the American health care system in general. And in the meantime, somehow, all these people became shockingly competent. (Well, most of them.) And I know that I've learned a lot too, yadda yadda yadda. But it's sad to be losing friends as they scatter across the country, and frustrating to feel left behind.

By the weekend, I really was feeling pretty decent, and by the beginning of the next week, it was clear that I was feeling altogether too good to not get back to work. I have had to miss two exams while flying around the country consulting with various doctors and deciding what to do, and they have to be made up at some point. Even without however many more rounds of chemotherapy and an enormous surgery, I still have the most academically intense few months of my life ahead of me as I prepare to take the national board exams in time to begin third year rotations. I am just going to have to make hay while the sun shines, and hope that the storm clouds pass quickly.

With a refrigerator stocked full of mom-cooked meals, a perfect breeze coming through my plant-filled atrium, and new tomato seedlings to check on during study breaks, in one week I slid five weeks of GI/Liver in peristalitic waves down my esophagus, across the glistening rugal folds of my gastric mucosa, past the squirting sphincter of Oddi, along my non-atretic small intestine, past the place my appendix used to be, through the shuttling haustra of my colon, and out onto a Scantron. It was a mess, but it got flushed.

Next?!

And... go.

The first time around, I had these gangly tubes sticking out of the inside of my left arm that waggled all over the place and made dressing and undressing an acrobatic activity. The next time, they moved the venous access more centrally, and I sprouted tubes out of my chest. While I could finally take a shower without wrapping my arm in an elephant condom, it was still stressful to try to keep it clean and dry. This time, I have finally achieved a true man-machine hybrid state: this morning, a port was installed. A chamber 2cm in diameter bulges out from under the skin on my chest, and is connected to my heart via a tube that loops over my clavicle and down through my jugular vein. When they want to inject anything or draw a blood sample, a needle pierces a thin layer of skin and enters into the chamber. Way less stress and maintenance. And completely badass.

I sit writing this the night before I start my third chemotherapy regimen. I am feeling strangely... good. All of the stress associated with figuring out what to do is in the past. Now all there is to do is live. Tomorrow I will go to the hospital. It will mostly be boring. Some of it will probably be uncomfortable. Then the infusion will be over, and I will go home. I'll probably feel bad for a while. I'll probably sleep some. After a while, I'll feel better, and we'll go from there. It's very simple, really.

It's time

The past few weeks have been very difficult. I have never been good at pulling the trigger on making big decisions, and the decision of which course of treatment to pursue was as big as they come, because of the immensity of the consequences either way. There have been so many twists and turns lately that I have not had a settled moment until now to write. This entry is going to be long, I am warning you. You should probably go get yourself a cup of tea if you actually plan on reading it all. If you just want the bottom line, feel free to skip to the last paragraph.

After meeting with three different doctors at Memorial Sloan-Kettering in New York, my family and I flew to Indianapolis to consult with the doctors there, and then I went back to Palo Alto for a week to regroup. It kind of felt like my own personal Camp David. Away of the mundanities and distractions of daily life in Los Angeles, looking at a crackling fire and a dozing old hound dog instead of a hospital waiting room, I had the space to think. The thing that continues to make this whole situation so complicated is that due to what was likely a medical error early in my care, my case is literally unique, and so none of the data that is out there in the scientific literature is directly applicable. Reading the literature, talking things out with friends and family, and communicating with doctors in LA, Indiana, and New York, I did my best to get a handle on all of the whys, buts, ands, and what ifs of this very complicated case. I have had the immense good fortune to have doctors who have displayed not only amazing intelligence, but inspiring humanity. Though there have been moments of ego-driven hyperbole, there have been even more moments of humility and dedication. I think that I can speak for all of my family and friends who were involved in this effort that it has been a challenge to keep it together as we bounced, often out of sync with each other, between dispassionate analysis, fearful anger, lazy resignation, and blind, screaming frustration. I will curse this cancer for the rest of my days for having caused so much disruption in so many peoples' lives, but it is not so simple as that. I also I have it to thank for opening my eyes to the spectacular love and dedication that surrounds me.

I have been forced to think about parts of medicine that no patient should have to consider, but I have to admit are germaine to becoming a doctor (ahem... I hope that the instructors of my Professionalism and the Practice of Medicine course will be moved to excuse a number of absences):

I have learned that despite the advent of instant communication and information access, medicine sometimes seems in fact to be operating under the guild system, where an apprentice learns a craft from a master, and continues as part of a proud but covert lineage. It became clear that as my doctors extrapolated as best they could from the data points that each of them found most relevant, they based their interpretations on their own personal anecdotal experiences, which were largely dependent on where and with whom they had trained.

I witnessed five master clinicians, each the chair of {his} respective department at world-famous institutions, navigate the treacherous waters of communicating with a patient. They had to make sure that I and my family felt respected and autonomous while they pitched their strategy, not so adamantly that they came across as cocky, but not so weakly that I did not take them seriously; they had to be able to use data when I required it, without rigidly sticking to statistics; they had to find ways of expressing respectful disagreement with their colleagues while advocating their own approach; they struggled to find analogies that resonated with me, and then suffered the consequences when I used those same analogies to argue against them.

I grappled with some scary questions about the way medical decisions are made. To what extent were my doctors' opinions, consciously or subconsciously, formed by their own career goals, the financial health of their hospitals, the success of their clinical trials? To put it simply, who could I trust?

Out of that Camp David week in Palo Alto, a hybrid plan was wrangled that combined the Indiana and Sloan Kettering approaches. Nobody got what exactly what they wanted, except me. I got to take the more convincing Indiana logic and combine it with the more relevant surgical expertise in New York. I got to avoid the toxicity of chemotherapy, while having the peace of mind of a surgery that could end this saga once and for all. [Those of you who know the whole story know that I am making this WAY more rosy than it actually was, but you know what? It's my history, and I am having fun rewriting it.] I would definitely be able to stay in school, and I would get to spend a whole month catching up with all of my New York friends. It was a great plan. Too bad it didn't last. [Is living in Hollywood getting the better of me? I am really trying not to over-dramatize this, but seriously, it's hard.]

When I got a new measurement of my tumor markers, all this got thrown out the window. The numbers have increased only slightly, but enough so that the Sloan-Kettering team no longer feels that it is appropriate to do surgery. It's been two and a half months of dithering. Time is running short, as are emotional fuses on all sides. It is time to act.

Another flurry of emails, hours and hours of phone calls and office visits, and multiple anxiety-ridden freak-outs later, I have made my decision. While there isn't a best decision, this one is mine, and I am as at peace with it as I can be. My port will be placed this Tuesday morning, and chemo will begin on Wednesday at USC/Norris. I will be getting gemcytabine/oxaliplatin/taxol every two weeks for as many cycles as it takes to render me marker negative, plus two more cycles. I will be in the day hospital for one long day each two weeks, and then probably be some kind of miserable for a few days after, the miserable period probably getting longer with each cycle. My white blood cell counts will certainly drop, so I am going to need visitors to be healthy and to be sure to wash their hands. The chemotherapy will be followed by an extensive surgery at Sloan-Kettering to remove as much of the residual tumor mass as possible. I still don't know how this will impact my progression through medical school. I am scared about lasting toxicity from the chemotherapy, and I am worried about surgical complications. But I am ready to be as sure as I can be that I am done with this once and for all. This anvil hanging over my head (or rather, in my guts) just distorts my life too much.

It is time to stop questioning, and instead to focus our collective energies on ensuring the best possible outcome. As I enter this next phase, I humbly ask once again for your love and support.

New York, again

I write from a bedroom in New York City, listening to the roar of the city through the open window – the only apparent way of counteracting the overactive heater. A little global warming with your tea?

I have been in a strange limbo-land for the past few weeks, and I want to apologize to the many friends I have failed to call or write back. I don’t want to be in the position of having to guard my own time and sanity by separating myself from people, nor do I want to spend my life, whether it be short or long, in such a self-centered place.

I find myself in weary acceptance; other times, I’m so SICK of this $%^&! Sometimes I am overwhelmed with sadness. Often, I am spectacularly successful at not thinking about any of this at all. But I have been trying, in many ways, to focus my energy toward the pursuit of a long and happy life. Going to class as much as I could felt like a good way to keep moving forward and remain engaged with the world (though I did catch a disgusting flu from interviewing a patient in the hospital). Skiing at Mammoth, and Salsa and Bollywood dance classes were steps toward getting in better shape. Eating better and drinking less are part of keeping up my end of the bargain.

At some point during these past few weeks I came to a realization that I had made a long time back, but had forgotten when fear set in again: that at every stage, there are too many possible undesirable outcomes to plan for, and that the only way out of this stagnant swamp of sadness is to plan on the best case scenario. This doesn’t mean blind optimism. It means removing obstacles that stand in the way of the best outcome, and being prepared to redefine “best outcome” as time goes on.

Four consecutive blood draws have shown that my tumor markers remain stable, but detectable. The testosterone challenge test that I mentioned last time didn’t produce any fluctuation in my tumor markers, indicating that I am indeed facing a recurrence and not some freak endocrine problem. While PET-CT is not likely to be very sensitive nor specific in this kind of cancer, I had one anyway just in case. It did not show any widespread disease, which is reassuring despite the caveats.

Today I had my first appointment with Dr Bosl at Memorial Sloan-Kettering since I saw him under eerily similar circumstances in April 2007. It was unfortunately more confusing than clarifying, since his team does not interpret the recent CT scans the same way as Einhorn in Indiana or Quinn at USC. In short, they don’t see anything that they can point to and feel confident calling active disease. As a consequence, Bosl is recommending chemotherapy to treat disseminated (but not visible) disease, followed by an extensive surgery to remove any resistant cells plus any teratoma that is there. Einhorn in Indiana has a very different opinion, recommending a relatively limited (though still major) surgery to remove the growing nodule that he says he can see and believes to be the unique source of the increased tumor markers. These are radically different approaches, and imply radically different risks. I am still unsure what to do, and need to explore all of the ifs, ands, and buts of each approach, which will take some more time.

My family and I will be staying in New York over the long weekend, catching up with family and friends, and wholeheartedly enjoying our forced vacation. On Tuesday and Wednesday, I have appointments with the surgeons who will be on my case if I choose to continue here at Sloan-Kettering, and we hope to continue on to Indiana to meet with the surgical team there later in the week. Hopefully, a plan will have emerged by this time next week. The best plan. For now.

A new chapter

I’m not really sure how to begin this entry, because I myself am feeling very detached from what is going on. I have reached the point at which it is too heartbreaking to repeat my bad news over and over again to all the people that I love, as I struggle to deal with it myself.

When the unmistakable Australian accent of my doctor emerged last Tuesday night from behind the blocked number on my cell phone, the rest of the world fell silent.

Two surgeries, eight rounds of “conventional” chemotherapy, and two courses of high-dose chemotherapy with stem cell transplant have failed to eradicate the cancer from my body. There is a small new lesion that has formed within the old scar tissue between my liver and my right kidney, and a very low, but significant new elevation in bHCG, a tumor marker found in my blood. There have been three successive blood tests that have confirmed this. They have also confirmed something positive: that the tumor marker is for the moment stable, and so does not likely indicate a rapidly-growing, imminently dangerous tumor. Despite this, the best oncological minds at USC/Norris, Indiana, and Sloan Kettering agree that this is indeed an ominous development and must be dealt with promptly.

I am in a very scary spot. There are so few people who have gone through this that decisions on what to do next are no longer being based on data, but on anecdotal experience and (semi-) educated guesswork. When I first found a lump (when was that? Even I’ve lost count…: April 2006), the chance for complete cure was something like 98%. That percentage fell to something like 80% at the next phase, then to something like 50% (depending on who you asked) before I relapsed and had to move on to the high dose chemo with stem cell transplant regimen. The chance for a cure is now probably much lower than that, though it seems that the paucity of data makes any number practically meaningless.

There are many possible next steps, but none will ever be satisfactorily confidence-inspiring. We are at a point where circle on the Venn diagram that contains the “curative” approaches has a lot of overlap with the circle that contains “palliative” measures; that is to say, it is unclear what,  if anything, will rid me of this once and for all. There is little assurance that a plan designed to be curative would be any more effective than an approach intended to delay the inevitable. The clinical decision-making process in which my doctors and I have been engaged is too complex and convoluted to be fully described here, but that fact alone is really the point: there is no right answer.

That said, there is general agreement among my three teams of what their experience suggests provides the best hope for a cure: return my tumor markers back to normal by administering a new round of chemotherapy treatments containing compounds I have not been exposed to yet (taxol, gemcytabine, and maybe oxaliplatin), followed by a quite complicated surgery to remove both the new mass and as much of the accumulated gunk in my peritoneum as possible. Because of its truly unique distribution, this will likely require a team of surgeons from a number of different sub-specialties.

We are conducting a test at the moment that may or may not change my eventual treatment, but which hopefully at the very least will be amusing in the short run. It turns out that an elevation in LH, the hormone that in males drives the production of testosterone, can be misinterpreted by the machine as an elevation in the tumor marker bHCG. Not that there is any reason to suspect that I may have some separate endocrinological issue going on that would be making my LH go up, but in the name of dotting all the “i”s and crossing all the “t”s, I was given an injection of testosterone this afternoon. The idea is that while the tumor marker would be unaffected if it is indeed a tumor marker, if it decreases within a week of the injection, then in fact it was not a tumor marker at all but an elevation in LH, which would be suppressed by feedback inhibition exerted by testosterone. So far I haven’t felt any weirder than I already do considering the circumstances, but I am a bit worried to let myself out in public. At any moment I might go on a raping and pillaging binge, so watch out!

My life is completely up in the air. I don’t know where I will be getting treatment, nor how incapacitated it will make me, or for how long it will last. I don’t yet know what this means in terms of continuing with school. I don’t know if the stress school causes is a contributor to my illness, or if it is a motivating force that gives the direction and purpose I need to persevere. I don’t know if the independence I value so highly after two years without it is something to cling to, or whether it is more reasonable to retreat back into the protective comfort of home. I don’t even know what I am doing tomorrow morning. I don’t know. I just don’t know.

There was only one logical response to the shattering of my peace of mind: I threw a huge impromptu party last Wednesday night,  and then flew to Washington DC for four days of celebration with family, friends, and two million other jubilant people.

 

Pictures

With Carla at a post-inauguration bash

FloJo at Cancer Party IV

That's my mom there in the corner pulling on the rope before she got accosted by a totally clueless plainclothes policeman who did not get the joke.

The Cousins Josh 

I randomly ran into Ski Teamers on the street in Adams Morgan!

Triumph!