an unfortunate set of events

Two year anniversary

2011-06-19T01:41:00.001-07:00

All of a sudden, as I sat in bed reading, my wife of two-and-a-half weeks jumped up and gasped. "What day is it?" I lowered a guidebook to the Big Island of Hawaii to my lap. "The 18th, why?" Her eyes were alive with excitement. "When is the anniversary of your surgery?" It slowly dawned on me. "The 17th." And as our hearts collectively jumped into our throats, maniacal grins tore across our faces. "We were zip-lining through the rainforest!"

From a honeymoon suite on the northern coast of Hawaii, with soft air carrying the sound of the waves and the scent of countless night-blossoming flowers through the windows, it requires a major effort to conjure up the memory of what this day felt like just two years ago.

I was in a grey twilight of consciousness. My pain was uncontrolled, and would not be for three more weeks. My lungs were beginning to incubate a hospital-acquired pneumonia. The gash down the center of my abdomen was being held together by staples, but an infection was brewing just under the surface.

I was full of morphine and antibiotics and hope. Hope that the surgeons really had gotten it all, and that I and all of my family and friends were finally coming to the end of a three-plus year saga. Hope that whatever the surgeons had done had not left me permanently incapacitated. Hope that my dream of leading a normal life of normal trials and tribulations was not a fantasy. I am not sure that I had the imagination to hope that at some point, my illness would not be the central defining aspect of my personality.

I am stunned when I think about how amazing my life is right now. I have been cancer-free for two years, and remarkably healthy in all other respects. The neuropathy in my feet has essentially resolved, and even my hearing is significantly improved. I am about to start my final year of medical school (only three years behind schedule). I know what I want to do professionally, and am proud of the progress I have already made. And I am married to a person more lovely than I ever knew existed.

These days, I find myself appreciating the moment, and planning for the future. I spend very little time reopening wounds of the past. I've got far too much life ahead of me for that.

In case you missed it, below is a link to our wedding announcement in the New York Times:

http://www.nytimes.com/2011/06/05/fashion/weddings/alia-creasey-and-joshua-lilienstein-vows.html

The Halo

2010-10-14T18:39:00.000-07:00

He was hit from behind. He was only driving about 45mph, and being 91, I guess we should forgive him that. I don't know any of the rest of the details about what happened to him that day, and I don't want to. From the looks of him now, it was the horrible beginning of a horrible end.

He is hooked up to a ventilator, strapped down to the bed, his swollen and disfigured head rigidly fixed in place by a collar designed to prevent him from moving his broken neck. It's been days since his accident, but he is still crusted with blood and dirt. We want to get him off the ventilator, because he has developed pneumonia, as many on ventilators eventually do. But if we lift his sedation enough for him to breathe on his own, he will be in excruciating pain because of his many fractured ribs, so we called Pain Control to come and place an epidural. I came back from lunch to find four strapping Anesthesia residents standing outside of his room, shaking their heads. Neurosurgery had nixed that idea, they said. They had been told that the patient's neck was too unstable, and that he could not be rolled onto his side for the epidural placement in his spine. Instead, Neurosurgery would come (when?) and put screws into his skull to attach him to a rigid armature that should stabilize his neck enough to place the epidural. The apparatus is called a Halo. Once we're done with this poor man, it won't be the last one he wears.

In case you missed it...

2010-09-19T22:37:00.000-07:00

An article about me appeared on the front page of the LA Times. Click here for a link to the article, and here for a link to the photos.

One year anniversary

2010-06-17T14:54:00.000-07:00

I had totally forgotten, until my mother called in a celebratory mood: today I have been cancer-free for one year! It is the anniversary of my "heroic" surgery, so named because the best doctors in the country agreed that it was the only thing that could cure me, even if they weren't sure that it would work. We had a wonderful conversation, talking about all the things that have happened since then, and how amazing it is that I am not only alive, but doing so spectacularly well. I feel altogether unreasonably healthy, and perhaps not coincidentally, the CT and blood work done earlier this week show no evidence of disease!

A three year long torrential flood of events has carved new channels and created new beaches on the riverbanks of my psyche. And while the flood has abated, the previously glassy flow of events is now swirled aside into unexpected eddies of doubt, and thunders up against new boulders of understanding, and spreads out onto fresh floodplains of reflection. And while I would not wish my disease on anyone, my life has been made so much richer by riding these waves. Every day, many times a day, I encounter situations that resonate with me differently because of my illness. Life has been and continues to be wild, and drenching, and scary, and exhilarating. What more could I ask for? Dayenu!

I have been busier than ever before. Yesterday was the last day of my Surgery rotation, which is famous among medical students for the absurdly long hours spent at the hospital, kowtowing to the established sado-masochistic hierarchy, all the while having stunning opportunities to engage with countless people during the most critical moments of their lives. There is so much to write about, but it must wait: I have an exam to study for!

In the Vascular Surgery Angiography OR: The number of pagers carried is inversely proportional to one's importance.

The Newborn Nursery

2010-01-13T00:03:00.000-08:00

In 1979, some variation of the following probably occurred.

A medical student, his hands quivering, placed his hands behind my shoulders and picked me up from a rolling basinet. He gasped as my unsupported head rocked back, seemingly threatening to roll right off my neck. He was quite relieved when it didn't. He placed me under a heat lamp, and then fuddled with the dial, trying to figure out how to turn the thing on. He measured my head with a paper tape measure, picked up his pen to record the data, and then wondered to himself for the first of many times if he was supposed to take off and change his gloves between doing this and doing that. He decided no. He searched a poorly mimeographed form for the right box in which to write this number. There were hundreds of boxes on the page. While searching, he forgot the number, and went back to re-measure. He sweated under the heat lamp. He did not even try to contain his surprise when I grasped his latex-covered finger and jammed it into my mouth, WAY in there, and began sucking on it. He had never felt anything quite like that before. He didn't imagine it tasted all that good, but I apparently didn't seem to mind, so he let me - at least it had gotten me to stop crying. He scratched my foot and made my toes fan, he flipped me over on my stomach and made me wag side to side by tapping up my back, he pulled my arms down and watched as they sprung back up. He gently squished my testicles between his fingers. I didn't like that at all. He decided that now would probably be a good time for a glove change, before picking up his pen again.

That head would grow curly blonde ringlets, then straight brown hair, then curly brown corkscrews, then fall out. Those lips would go on to speak French and kiss girls. Those reflexes would be incorporated into innumerable layers of recurrent neural subroutines, and be orchestrated to throw curveballs and fill out forms. Those testes would grow cancer. He documented what he could, but he had only the faintest idea what might happen to it all.

It's over! Let it begin!

2009-12-18T18:30:00.000-08:00

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

2009-11-21T15:55:00.000-08:00

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

2009-07-31T12:45:00.000-07:00

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

2009-07-19T20:43:00.000-07:00

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!

2009-07-02T17:03:00.000-07:00

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!

2009-06-25T22:07:00.000-07:00

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

2009-06-17T04:11:00.000-07:00

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

2009-06-16T21:01:00.000-07:00

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

2009-05-27T01:05:00.000-07:00

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

2009-05-04T23:13:00.000-07:00

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

2009-04-01T00:03:00.000-07:00

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.

2009-03-17T23:35:00.000-07:00

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

2009-03-14T01:58:00.000-07:00

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

2009-02-12T20:45:00.000-08:00

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

2009-01-23T00:06:00.000-08:00

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

2009-01-22T23:43:00.000-08:00

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!

Birthday post 2008

2008-08-19T01:12:00.000-07:00

I looked out the window of my lab, down at the quad of the medical school. A line of second-year medical students was forming in front of a booth that had been set up to administer TB tests. Supposedly, I was a part of that group milling around down there, forming a nebulous line while exchanging beginning-of-the-school-year high-fives and hugs after having spent the summer apart, except that I didn’t know anybody to be high-fiving or hugging, and I have spent almost two years away from school.

As the summer has begun to wane and I look forward to finally re-joining second year of medical school, I have become increasingly worried about being able to keep up. It was daunting enough, before being addled by a flurry of pills and a slurry of secretions. Is it still reasonable to expect to achieve the goals I set Before? What future do I have to look forward to? Untrustworthy doctor? Med school dropout? Disgruntled lab tech? Disability recipient? Family mooch? There have been some pretty scary times over here.

I went downstairs and out into the sun. For a few minutes, I just stood there, sweating, alone in a crowd of people who all knew each other. And then one recognized me. And then I was introduced to someone else. We chatted. It wasn’t so bad. Say what you will about medical students (and I have), but I defy you to find another group of 170 people who are as social, energetic, and can-do as these people. I guess I can deal with that. I got up to the front of the line, and when the nurse asked my name, I started to explain that I wouldn’t be surprised if I wasn’t on the list because you know it’s complicated I’ve been … Oh. I AM on the list? Wow. OK. Great.

After lunch, the herd moved upstairs to the building where our cubicles are. Not that I expected to have one… oh wait. Look! It’s my name! On a cubicle! (this very well may be the first time in recorded history that anyone has reacted positively to this sight). And they had a new badge for me. There I am, peering out from a plastic card! I must actually exist!

A couple of days later, I am walking through the lobby of Norris, the cancer hospital where I was treated, and I see Evelyn, one of my favorite nurses. We exchange hugs, and hold back tears. She asks if I have time to come upstairs and meet a new patient of hers who just started his first round of chemo. Of COURSE I do. He’s in 3314. I know which way to turn out of the elevator. I know where to find the hand sanitizer. And when I see this young man sitting on the bed, hooked up to an IV, looking shaken but courageous, and when I see his mother sitting beside him, looking calm and determined, I know them too.

I can do this.

Regression

2008-03-15T01:05:00.000-07:00

Since my diagnosis almost two years ago, I have felt justified in receiving more than I give. I remember the moment that I realized that I was about to have to call in all of my favors, to play all of my trump cards, and probably to rack up a hefty debt of goodwill. In a lot of ways, I really did need to be the center of attention. I relied on my doctors, residents, and especially nurses, to not forget ANYthing in their efforts to keep me alive, and to attend to my comfort 24 hours a day. I relied on friends to help me catch up on classwork that I was forced to miss, to buoy spirits in and out of the hospital, and to provide the souding boards I needed to come to terms with my illness. I relied on lovers to help me not to feel irrevocably damaged and undesirable, to provide intimacy in a life that had suddenly become all too public, and to bring tenderness to a time of sharp steel and sticky plastic. I depended on school administrators to give me the time and flexibility I needed to recover. The Physicians Aid Society covered thousands of dollars worth of medical bills. I have depended on the sympathy of co-workers to forgive distracted mistakes. In many ways, I relied on my parents for all of the above, and for too many other things to mention. I have been the beneficiary of the collective resources and goodwill of the entire society.

These days, I go to work; I play tennis; I do the laundry; I shop for groceries. There have been enough clear CTs and lab tests in a row that I no longer go to bed expecting that I might find myself back in the hospital the next day. But I am not out of the woods. Now that my life is back in my hands, I am only beginning to recognize dysfunctional behavior patterns that have emerged, or been strengthened, as a result of all that has come to pass.

I think that I probably went through a huge regression during this traumatic time. Children are dependent because they are children. It is also possible to become childish because of dependency.

Losing control of so much of my life meant that I felt justified in using the rest of it as I saw fit. I got used to doing what I wanted, when I wanted to do it, and feeling fine about ignoring the rest. Somewhere along the way, it started to feel like I deserved to be the center of attention because I’m ME, instead of because everybody recognized that their contribution to my well-being was vital. But recently having hurt many people I love with self-absorbed behavior, I am belatedly realizing that I cannot remain a black hole for people’s good will forever.

The Window

2008-01-07T19:21:00.001-08:00

How normal life feels. Which is strange. After all that I have been through, how is it that I have reverted back to so many behavior patterns and thought circles? Most of the time, it takes an intentful effort to regain the perspective on life that came so naturally when I was ill.

In retrospect, life was simplified, essentialized. You know the feeling when you are splayed out of the bathroom floor, feeling like there is absolutely nothing, nothing, except your guts, your tongue, and the white porcelain of the toilet bowl? (No, of course not a single one of you has ever felt like that!) Though I didn't actually spend very much time feeling nauseous, I spent a lot of time in that kind of mental box. But I not infrequently found myself in another, much more beautiful place. With all the complexity of the world dissolved away, a kind of clarity would sometimes come to me. The wonder of the world, of love, of connection, would hit me so hard that I would cry with simple, quiet joy.

I remember that it felt like I had opened a new window to the world, and that having looked out once, I would remain forever changed. But as my life mercifully has become more normal, my emotional relationship to the world, sadly, has become more mundane. The window has become smaller, harder to find. But as I realize this, I realize how important that window is to me, and I realize that I get to choose what I let go of, and what I hold on to.

transition to reality

2007-12-02T23:14:00.000-08:00

Transition to “real” life is going smoothly. I have decided to make LA work for me, instead of constantly being annoyed about it. The key is that I now have a great bike (thank you dad!). The best part is that it has a rack with a quick-release shopping basket, so I can get to Trader Joes and back without having to get all worked up cursing at the traffic jams in the parking lot. I don’t have to worry about getting parking tickets on street sweeping days like my colleagues, because I can walk the four blocks to work at Children’s Hospital LA (though I did get a jaywalking ticket the other day – is the LAPD really wasting time making the city even less pedestrian-friendly?) I realized that the last time I could honestly say that I was in shape was my senior year of high school when I was running track and cross country, and so I am making a concerted effort to make use of Griffith Park’s trails and tennis courts, a short bike ride up the hill.

It is eerie living alone after being taken care of for so long, but also liberating. I feel like I have more free time now that I have a job than I did when I was just sitting around recuperating. Obviously feeling healthy has a lot to do with it – go stem cells! I also notice that more always seems to get done when there is more to do (duh). Mostly, I spend my free time reading, as I try to educate myself about the incredible complexity and dysfunction of the American health care system. I bounce between The Social Transformation of American Medicine, Understanding Health Policy, and Fixing American Health Care. I am also reading The Female Brain (clearly applicable to any endeavor), a collection of short stories by P.G. Wodehouse, and I just finished The Right Stuff. Add this to a few hundred megabytes of scientific articles about the relationship between sphingolipid metabolism and cancer, and it’s no wonder I’ve got a crick in my neck. Which brings me to one of the inconveniences of living alone – it's just not that satisfying to give myself a neck massage.

And now for the bit you are all really here for, the gory, scary, life-and-death part: no news is good news. We are still in surveillance mode, where hopefully we will remain for the next few years. I had another CT last week, which was thrilling as always. I really think that if they are going to make people drink pina colada-flavored barium glop before scans, they should at least spike it with rum. It would go down easier, and everyone would be so much more relaxed. Since everyone arrives having fasted for at least four hours, they wouldn’t have to put much in to get the party started.

Moving on. ... ?

2007-10-16T17:27:00.000-07:00

After a couple of months of limbo, I am finally moving on. I’ve decided that it’s time to get back to LA, and move forward with my PhD for the time being. It was just too soon to start school again. I need time to review all the things that I have forgotten, and get my life back together, before jumping back into the fray. I think that lab work will be a good transition – I can make my own schedule, more or less, and will have the space to get back on my feet while moving forward with my degree. I still want to find a way to do some traveling and international health work, but I think that it makes sense for me to let my immune system fully recover before traipsing around the world. Maybe next summer. I am really looking forward to regaining independence, and having an identity other than being sick.

On the health front, it’s déjà vu all over again. Einhorn, the world expert who treated me in Indiana, told me when I left that there was no need for any further treatment, but Srinivas, my oncologist at Stanford, thinks that in principle, I am in the same place that I was in April, before my tumor markers started going up again: I still have a bunch of goo in my abdomen, and with no way of knowing whether it is merely dead, fibrotic tissue, or hiding some teratoma which could become malignant in the future, it is not unreasonable to reconsider surgery to remove it. Last time around the Stanford surgeons (Norton and Presti) were confident that they could remove it without any significant collateral damage, but the USC surgeon (Skinner) was adamant that the surgery not be done, because in order to eliminate everything that could be dangerous, he would have to remove my bladder and rectum. My various medical teams are arguing about it now. Once again, I have to plan on the best case scenario, because planning for the worst is not only terrifying, it prevents me from getting on with my life.

Living with hearing loss has recently gotten a lot less frustrating, due to some pretty amazing technology. I finally admitted that I had a problem, and that wearing hearing aids was better than being disconnected from the world. Despite the annoyances (there’s something IN MY @#*&ing EARS!/can’t lie on my side/feedback screams when people hug me/needing to remember to take them out before getting in the shower/is it raining hard enough for me to have to worry about getting them wet?/the world sounds sharply digital instead of sensually analog), they have dramatically improved my quality of life. I am functional again! Only very rarely do I have to ask people to repeat themselves, and I no longer have to read lips to understand a conversation. I want to thank you for tolerating my disability for so long, and I am happy to say that everyone can stop shouting now.

Despite the fact that it is still not clear how much of the incredibly high cost insurance will cover, I decided that there was no point in trying to save money on something as fundamental as my connection with the world, and got the best hearing aids out there, called Oticon Epoq. They are tiny (though not tiny enough… I want implants!), and feature-packed. They wirelessly communicate with each other, so that when settings are changed on one, they are also adjusted on the other. They also compare incoming signals and do some fancy processing to enable better sound localization than hearing aids that function independently. In movie theaters equipped with devices for the hearing-impaired, my hearing aids are supposed to pick up the signal. Instead of going to Customer Care to check out a pair of headphones that will merely make everything louder, the soundtrack will get put through my customized equalizer settings before being piped into my head. But the best part is that I’ve basically got the world’s best Bluetooth headset. I wear a thing around my neck that looks like an iPod mini, but is in fact a Bluetooth hub and microphone. When my phone rings in my pocket, I hear the ringing in my head, and I push a button on the hub to answer the call. It also picks up the signal from the Bluetooth transmitter I got for my iPod, so I can listen to music wirelessly. I’m pretty much a cyborg at this point.

Reckless behavior

2007-10-05T15:09:00.000-07:00

I am not sure why, after staring death in the face for so long, I apparently find it difficult to take it easy. I guess I am just totally fed up with being “sick”. But just because I have been feeling good lately apparently doesn’t mean that I have a functional immune system.

I was sure that it was on its way back. I finished my first round of maintenance etoposide two weeks ago, with no symptoms other than a couple of tired days at the end. I was to begin the next round one week after finishing the first round, but my doctors and I agreed to wait a week longer than planned to give my white cell count could have time to recover from weak but viable (ANC of 680) to robust (~1500) before hitting it over the head again. Since the danger level is an ANC of below 500, and it had been a few days since my ANC was 680, I figured that I had some margin, and decided to fly out to rural Missouri to meet up with Sarah and see where she grew up. I even wore a mask on the plane, just to be safe.

After a day driving around the ranch and hanging out with the family, I got a sore throat, and then a fever that wouldn’t go away. My doctors sent me off to find a lab to do some blood work, and called in a prescription for prophylactic antibiotics to the local pharmacy. The nearest capable lab was an hour’s drive from the ranch, which is itself an hour and a half from the nearest airport. I figured that it was all overkill, and set out thinking that it was at least a good excuse to take a drive and see the countryside.

Three days later, I am still in the hospital. My ANC had mysteriously crashed to … seven. Not 700, seven. I had been bottle feeding baby calves with basically no immune system.

Finding myself hospitalized in Sedalia, Missouri was surreal. What was I DOING there? And wasn’t I done with this ridiculousness already? Giving my medical history over and over, endlessly getting stuck with needles, beds that make noise and move for no good reason, choosing between going hungry or eating “food”, constantly making sure that my nurses were washing their hands, relaying information to parents while trying to manage worry, and waiting… and waiting…. It was the twilight zone.

After one night and day of IV antibiotics, I felt great, and started trying to figure out how to get out of there. There was a range of opinion on when I could leave, with my oncologist in LA recommending that I just get home and be treated by people who knew me at a bigger, better medical center, the local doctor prudently advising that I stay until my counts had fully recovered, and my oncologist at Stanford splitting the difference. We pushed our travel plans once, and then again. How to measure risk, and balance it against comfort? Surely getting on a plane without an effective immune system was dangerous – it was probably the reason that I was in the hospital to begin with. But despite competent care (what are all of those doctors with heavy foreign accents doing in rural Missouri?), it just didn’t feel right to stay there, isolated from everything. I needed to get home. Feeling fine, having been more than 36 hours without fever, with negative blood cultures, lots of antibiotics coursing through my veins, and planning on going directly to the hospital on arrival, I ruffled not a few feathers by leaving AMA (“against medical advice”), put on an extraordinarily uncomfortable mask, and got on a plane home.

I am happy to say that the most dramatic moment of the travel day was being bumped up to first class – at least the Cancer Card hasn’t lost any of it’s magic. I checked into the Stanford ER at 10:30pm, and after many more needles, repeating the same story countless times, being strung up like a marionette with a dozen wires, and hours of waiting, and waiting, and waiting, I got into my room at 4am.

Thankfully, this ridiculous interlude has come to an end. I was discharged this afternoon with a fully recovered white blood cell count, and am blissfully without IVs and tape all over me, breathing the outside air, watching the fall leaves, and smiling.

Denouement

2007-08-25T23:22:00.001-07:00

After the excitement of the past few posts, it has been difficult to get back to writing, because I am engaged in a less flashy, but in some ways, still difficult transition period. While the most traumatic part of the treatment is in the past (I hope), there is still much fallout to manage.

I am trying not to be too upset by continued hearing loss, but it is very hard to lose a sense. Part of the richness of life that I have always taken for granted is suddenly unavailable to me. I am isolated from the world, more so than I have ever been. I have difficulty participating in conversations other than with friends and family who agree (and then remember) to make an effort to speak loudly, to not cover their mouths with their hands, and to not expect me to be able to follow if we are not at close range in the same room. Without being able to read lips, night time has become even more quiet. Car rides are mostly solitary experiences – there is just something about the ambient noise that makes it hard to follow conversation. Transactions are frustrating – “paper or plastic?” becomes an embarrassing question when I have to ask it to be repeated five times. The other day I waited on hold for fifteen minutes, only to give up when the Member Service Representative finally did answer, because I couldn’t turn the volume up high enough to hear. I burn the onions because I can’t hear the change from the low bubbling burble to the higher, faster sizzle. Music is hard to deal with. The midrange is gone, and everyone sounds like they are singing off key. TV and movies must be watched with subtitles on. Though still unacceptable, I do think that my hearing is getting better. Achingly slowly, but better nonetheless. Nobody seems to be able to tell me for sure how much of my hearing will come back, or when. I have heard that hearing aids are decent these days, but I am holding out, hoping that my body will continue to bounce back.

I went to my tenth high school reunion last week, and ran into Ben Kaplan, who writes a blog about stem cell research. Ben has become very public about living with cerebral palsy. I realized when I saw him that I had always avoided him, because as a teenager, I didn’t know how to deal with his disability. Should I ignore it, so that he wouldn’t be self-conscious about it (as if anything I could do could have kept him from being self-conscious about it)? How could I ask about it, without showing that I was ignorant (as if not asking didn’t demonstrate the fact that I was)? I got a reality check in talking with him. Despite growing up with a disabled grandfather, I think that even I have sometimes subconsciously thought that the disabled were lazy, or stupid, or scary, or that they just wanted to be left alone, in order to justify my own avoidance of them. Losing part of my hearing has made the reality of living with disability painfully obvious to me – there are impediments that millions of people are dealing with all the time that the rest of us are unable to fathom, and being isolated because of them is the worst punishment that social beings like us can face.

In order to clean up any lingering renegade cells, I was supposed to have started maintenance chemo a month ago. I haven’t even started yet, though, because my immune system hasn’t bounced back as quickly as expected. Neutrophils, which are the body’s first responders to infection, normally number around 3500, and mine have managed to rebound (from zero!) to around 1800, which is enough to keep me healthy under normal circumstances. But if I were to start the maintenance chemo now, as two out of three of my doctors recommend, there is a high likelihood that my neutrophil count would fall below 500, which is the cutoff point for withholding further chemo. Not only would I not get the full dose of chemo, but I would be at risk for opportunistic infections and neutropenic fever, which landed me in the hospital for a week last spring. Also, from a theoretical point of view, it seems to me that potentially being forced to cut short a course of chemo would select for more drug-resistant strains if there are any, which would be less sensitive to the next round of chemo (the same reason that you should always finish all of your antibiotics!). On the other hand, if there really are any malignant cells lurking around my body, it would be good to kill them off before they gain a foothold. As my doctors readily admit, there is no data here, and once again I find myself in a medical grey zone where the proper course of action is unclear.

All of this of course affects whether or not I will be able to resume school again in mid-October. I am very thankful that the administration has been so supportive – they told me that I could start in October if I was ready, but that they would understand if I wasn’t, and a position would be open for me next year if I needed some time. In the meantime, I am working on editing a manuscript for Dr. Reynolds at Children’s Hospital Los Angeles, with whom I had planned to pursue my PhD before getting sidetracked, and exploring other options for how to productively and happily pass the time if I decide that I am not ready to start school in October. I spend most of my days debating what to do next, and despite the fact that I am not back to “normal”, I am happy to say that I am dealing with an embarrassment of good options.

responses

2007-07-31T14:53:00.000-07:00

Wow! Whoever said that newspapers were irrelevant in the digital age never had an article written about them. A huge number of people have written, both leaving comments on this blog, and via email. Many relate their own harrowing stories – it is a terrifying and sad thing to remember that I am not alone, that there are dozens and hundreds and thousands and millions of people whose lives are right now being touched by tragedy. The torrential outpouring of stories is amazing to me. Maybe it shouldn’t be, since I have obviously felt this same need to share mine. The urgency with which people have been sharing their experiences reminds me of something that we are taught in the first year of medical school, but which largely falls on deaf ears: how important it is that people feel that they are listened to and understood. The article may have been written about me, but this is not the reason that people have found it interesting. Its greatest value seems to have come from the fact that it provided a stimulus for others to express themselves.

As for me, I am relishing feeling better every day, though with the crisis averted, there is more space for rumination. A few entries ago I wrote about there being a clear path ahead. I am back in Palo Alto now, and in the calm of home I find that while there are fewer terrifying possibilities looming, there are many new and important variables that have sprung up, and that the path ahead is not at all clear. Will I be physically able to begin school again in the fall? Will I be emotionally stable enough? Is it more important for me to re-engage with school so that I can apply what I have learned to my studies and beyond, or should I take some time to reconsider my goals, and enjoy life?

(No need to weigh in all at once!)

surprise!

2007-07-28T09:59:00.000-07:00

To view the online version, click here. You will have to register, but it's FREE.

A HUGE sigh of relief

2007-07-03T09:12:00.000-07:00

It is with great pleasure that I write this entry. I met with the doctor in charge of my care yesterday, and he announced with no delay that my CT scan was completely normal, and that there was absolutely no need for surgery of any kind!

Deep breaths all around. And then champagne!

I was shocked. Still am. It has been impossible not to be constantly cogitating around the infinite eventualities of all theoretical outcomes. To find myself lying awake at night, despite rather large doses of sleeping medication, working out contingencies for contingencies. And all of a sudden, there is an answer, a clear path, and not only that, the best possible one!

I have not yet made it into full-on celebration mode. For one, my body is nowhere near recovered. But more importantly, I am trepidatious about really letting go. At every turn for the past fifteen months, each time some doctor tells me that everything’s OK and I can get on with my life, the door has been slammed in my face shortly thereafter. Back to the hospital, and again in a gown, not a white coat. I want to believe that this time it’s true, that I can return to my carefully laid-out path, but I can’t help but be a little scared.

There is also a little matter of maintenance chemotherapy. In order to diminish even further the possibility of this crap ever coming back, I will be taking a low dose of etoposide for three months, starting in a month. Supposedly it will merely make me a little more tired than usual for a few days out of each month, but we’ll see about that.

Enough wet blankets! After the appointment, I immediately flew out to DC to celebrate. Washington, DC?!

I have tried in this blog to keep my personal life as private as I can, but to explain what the hell I am doing here, I am going to have to spill some beans. But only a few. Back in April, right in the middle of flying like mad around the country trying to decide where to get treatment, I attended the wedding of a dear friend in San Francisco. And we all know what can happen at weddings. There you are, hanging around for hours with a whole bunch of people, some of whom you know, and many of whom you don’t. But the ones you don’t know have been vetted already: they were invited to the wedding by either your friend, or your friend’s new committed partner. Everyone’s all dressed up and feeling terribly romantic. There’s a dancefloor. You find yourself wanting to throw a little kid through the window because he’s dancing with the girl you want to be dancing with. One thing leads to another, and... here I am in DC. Sarah has been with me more in the past three months than is easily explained, in California and Indiana. She has been stupifyingly supportive and loving, and brought light to what could have been a very dark few months. I am sitting in her Dupont Circle apartment feeling a little bit guilty for not being home to celebrate with many of you, but I hope you will forgive me. We are having a grand time.

Relief, Dedication, and Suffering

2007-06-26T06:47:00.000-07:00

I now have attached to my body five leads, and at least five different tubes carrying various fluids into my body, hooked up to their various beeping and grunting pumps. I am a mess of wires and tubing, plastic bracelets, buttons, and sweat.

As may be remembered, or willfully forgotten, there was a point a few months back when my blood-borne tumor markers were in the normal range, and various doctors were being consulted as to whether or not it was necessary and/or possible to surgically remove what looked like a bunch of dead tumor still hanging around in my abdomen (the entry for Thursday April 5, 2007 will give more details for anyone interested). Then my tumor markers shot back up, and the whole question was rendered moot as this current course of chemotherapy was planned. Now that I am approaching the end of this phase, it is time to begin thinking about what happens next. A conversation with the head oncologist here clarified something very important, and left a huge, shimmering puddle of relief in its wake. No matter what the results of the CT scan that will be done at the end of next week, there will be no permanently handicapping surgery. It may still be necessary for me to undergo a major operation to remove any remaining tumor mass, but this surgery, if performed, will not involve the removal of my bladder and rectum, which at one point was being considered. If given a 20% chance that I would die of a secondary tumor in ten years without the bladder-and-rectum-removing surgery, but a much higher probability that I would live into old age with holes in my body emptying fetid waste into bags slung around my legs, what would I have done? How could I possibly make this decision, in this state? What would it mean to my family and friends to tell them that I was willing to risk it, and what would it mean to my sense of self if I bet on longevity? With ecstasy, I am hereby dropping the whole topic.

The beginning part of this week went very well. My days fell into a routine which was by no standards exciting, but in retrospect, great. We would go into the hospital around 8:30 (when we were being good), and lobby for a private room to escape the maddening beeping of other peoples’ IV pumps. I get hooked up via my bionic contraption to a huge bag of saline, which keeps me grunting my way over to the bathroom throughout the day. Blood is drawn, analyzed, and I am given electrolytes if necessary. I swallow lots of pills designed to keep the meanies from eating me from the inside. I sit there for around five hours, sometimes sleeping, sometimes reading, talking with my mother, allowing her to convince me to eat. Lately I have spent some quality time trying to catch up with my generation, awkwardly punching buttons on personal video game consoles loaned by friends. My spirits were kept sky-high by some stunningly incredible love and caring.

Saturday night, things started getting ugly. I had a delirious night, thrashing the sheets in the throes of half-awake dreams, punctuated by blindingly painful abdominal cramps. Sunday may have been the worst day that I have had so far during this entire ordeal, though this is a case in which I am happy to have a slippery memory. The basic problem throughout the whole day was pain control. Apparently rule number 1 with pain is that as long as it is not allowed to spiral out of control, it can be relatively easily managed, but once it gets its dirty festering claws in you, it takes gargantuan efforts to battle. Pain management must be among the most difficult jobs a doctor has. How do you balance the patient’s awareness against their misery? How do you know you are not being scammed, when the patients themselves may not realize that they have become dependent? Does the patient really know what they are asking for? How do you distinguish between people “bellyaching” and something important to take care of immediately? How do you not create an addiction while trying to help? And, by the way, careful not to OD anyone.

Up to this time, I was being given oral oxycodone sporadically, and even had it been given on time, it was just simply not up to the job. For the entire day I was clutching my gut in moderate pain, punctuated by spasms every fifteen minutes or so that would send me into a panic of sweat and moans for a few minutes. Every time I would try to eat (bland, small bites, very slowly), I would be rewarded with spasms so sharp that they would propel the food right back out. By the end of the day, I was having that reaction to the amount of water that it took to swallow a pill.

They decided to admit me around 5, but since they didn’t have any free beds in the BMT unit, I was sent to the general oncology unit just down the hall. It was a mistake to have acquiesced at all. The difference in competence and training of both the nurses and doctors was flagrant. I arrived around 6, and told the nurse that I was in pain, and cold. It took approximately an hour for a blanket to arrive, during which I was clenched, curled up in a ball trying to stay warm, as my guts gleefully jumped at the opportunity to cramp repeatedly. Mom is out, will be back later, but there is no cell phone reception and the landline only makes local calls. Push call button: “Pain! Cold!” – response: “We know, we are working on it.” “PAIN! COLD!” “Coming soon!” From 6pm until 9pm, my pain was completely out of control. Once the fentanyl pump did arrive, they had me on the lowest dose. It took me an hour of trying to organize my thoughts while writhing in pain to tell them that I needed more, way more. By the time my mom did arrive, things had settled, and she was on a righteous warpath.

But I was hungry. My body having rejected every piece of nourishment I tried to give it, I figured that it was finally the moment to try to eat something, since my pain was no longer a problem. Wrong. Slow learner. It took two attempts at eating and two violent reactions to realize that this was not going to work. At that point, all I wanted was sleep. I was sick of being in pain, sick of vomiting, sick of that day, sick of being conscious at all. A decision was made at around 2am to up my fentanyl dose, hit me with some ativan, and call it a night. Sounded great.

6am. I open my eyes to at least fifteen faces within three feet of mine, staring at me expectantly. The room is completely packed. Everyone is calling my name. I find it frankly amusing. Who didn’t tell me there was going to be a party in here later on? What’s up, everyone? Hi! Why are you asking ME what’s going on? I have no idea! And can I please go back to sleep? Now? Cause I’m really, really sleepy. Yes, I know where I am, yes, I know my name, hi mom, why are you crying?

I had been overdosed on fentanyl. Luckily, the room into which I had been transferred was a double, but with nobody occupying the other bed, my mom had decided to spend the night to head off any further problems. With no monitoring equipment set up, it is a damn good thing she did.

[Mom says: Had I not been there he might have died. I heard a weird nonhuman wheezing or rattling sound, twice, and rolled out of bed just to check it out. Joshua’s chest muscles were tight, his eyes were staring straight ahead, pupils and mouth wide open. I called to him, yelled at him, shook him, shook him again, kept yelling while I tried to sense a pulse, realized that was stupid, panicked, pushed the call button, realized that was stupid too, called for help twice down the hall, and everyone came running. The nurse turned off the infusion pump immediately, and gave him oxygen. The nurse hugged me and took me out of the room while the doctors piled in. He was revived within a minute or two.]

Needless to say, any indignation at the treatment I had received on Sunday was dwarfed by the fury of Monday morning.

I was transferred back to the BMT unit, and all the doctors and managers are apologizing and trying to figure out what went so wrong. My pain is back under control at a much lower dose of fentanyl, and while I did spend yet another day hungry because of bureaucratic stupidity, I will be started on IV nutrition this evening, so that I won’t be trying to feed myself and cause more damage.

I spent the day taking tiny sips of very dilute fruit juice and sleeping. It was a great day.

high dose round 2

2007-06-14T18:20:00.000-07:00

I am sitting in the exit row, flying back across this vast country, hopefully doing this stretch for the last time. We are on our way back to Indianapolis, after an absolutely essential break in Palo Alto. It was not the break that I had imagined: I had hoped to leave it all behind, to relegate all of the unpleasantness to the time when I was “working” on things in Indiana, and to have a real vacation, unfettered by side effects. Coming from as low as I had been, though, this was of course wishful thinking. Obviously, I immensely enjoyed being home, relaxing outslde, walking around, eating (and appreciating!) wonderful food, sleeping in my own bed for as long as I wanted without being awoken by nurses or alarm clocks, seeing friends and being able to hug them, having conversations without the distracting smell of the hospital seeping out of my pores, and generally participating in the big wide world out there. But it was actually less of a vacation than a wonderful time and place to recuperate. In the grand scheme of things I surely bounced back quickly, but it has felt agonizingly slow from the inside. I spent way more time lying down than I expected. Ten days later, many of the symptoms I described last time are still present – the blotch in the middle of my visual field still makes reading slow, the neuropathy in my feet makes a short walk around the block feel like I have been running barefoot on gravel, and the combination of the dissonant tones constantly screaming in my head with the perception that everyone is only voicing 75% of the words in each sentence makes conversation require eye contact, focus, and repetition.

The prospect of even more damage being done by the next dose that I will be getting, starting tomorrow, is very scary. I know that hearing aids have gotten better over the years. I know that many of my symptoms will diminish in severity, and may even disappear entirely. For instance, my sense of taste has completely returned! But projecting in to the future, the route I had laid out for myself was ambitious enough without factoring in these and other possible handicaps, and there are moments when I can’t help but allow doubt to creep in from the dark corners of my mind. I know that lots of people go through life much more incapacitated than I will be, no matter how bad side effects from chemo get, and no matter how extreme a surgery I may have to undergo. But contemplating someone else’s disability is diffferent from thinking about my own. It turns out that not only is sympathy really not the same as empathy, but that being able to understand what it is like to be in someone else’s shoes doesn’t mean that I have figured out how to tie my own.

For some reason, this second and final round of high dose chemo with stem cell transplant is supposed to be easier to get through than the first one. Maybe it’s because there are fewer unknowns, maybe because the whole process will be a few days shorter because we have already collected enough stem cells and so don’t have to repeat that procedure, or maybe it’s simply because I know that no matter what the outcome, I will not be doing this again. In any case, despite the tone of this entry, I am heading into this feeling (relatively) strong, energetic, and optimistic. There is so much water under the bridge at this point that there is no way to see it other than just another ripple that will crest, break, and move on.

Jailbreak

2007-06-04T13:43:00.000-07:00

Little by little I become less bionic and more human. There are fewer and fewer glistening plastic udders dripping questionably welcome drugs into me. One by one, the tubes feeding into my port are being taken away. An amazing feat of biology has been successfully performed: my stem cells have engrafted, and my immune system has reconstituted itself from oblivion. I have one more night in the hospital, a day to pack, and then I fly home on Tuesday!

This has been a very difficult hospital stay, and I am extremely relieved to be getting out of here.

Senses are precious and delicate things. All of mine have been under attack. My ears are worse than they have ever been, to the point that I have trouble understanding my own mother. Music is muffled, and voices on movies or TV are practically unintelligible. If something comes in from the hospital food service, the nauseating smell of the institutional kitchen overwhelms the smell of the food. My feet are numb and cold, I am constantly sweating even when I don’t have a fever. My fingers are numb and feel clumsy. Everything, even water, tastes strange, if not rivolting. Just getting enough calories in is a real challenge, food service or not. My eyes… :

A few nights ago (how many? How to tell? Time slips by in a sweaty smear), I was reading before going to bed, and I noticed that I was having difficulty because there was an after-image (like after looking at a bright light) that wasn’t going away. What was eerie, and then terrifying, was that there were no bright lights in my field of vision – the reading light was behind me. With my fingers clumsy, my feet numb, and my ears screaming, I was primed to assume the worst: that the peripheral neuropathy caused by the chemo had progressed, and had begun to destroy my optic nerve. Thankfully, both intravenous anti-anxiety meds and a consult from opthamology were not too far away (there are good things about being in the hospital). After having my eyes dilated for five hours (during which time I could not only not see anything, but not even listen to music because my ears are so screwy), the opthamologist arrived and quickly diagnosed a retinal bleed. It seems that little tiny breaks in teeny vessels happen to everyone all the time, but get patched up fast enough that they don’t hemorrhage. Since my platelets were so low, when a small vessel in my eye burst, it wasn’t repaired quickly, and enough blood spilled out into the surrounding tissue that it caused a spot on my retina (right in the middle of my right eye’s visual field) to be perceptible. To my great relief and annoyance, I was told that it would go away over a few weeks. Next round, we are going to be doing even more platelet transfusions to hopefully keep this from happening again.

It is difficult to contemplate the next round, even to go so far as to say “only one more to go!”, because I really haven’t gotten over this one yet. The thought of having to do it again is sickening, at this point. I am focused on getting to sitting outside in my parents’ garden, and not much beyond.

Earthrise from the dark side of the moon.

2007-05-30T19:52:00.000-07:00

Strange journeys, and slow. Occasionally a random tinkly arpeggio penetrates the thick barrier of wet felt, sweater pill, and static electricity that surrounds my head, cakes my eardrums, and turns my brain into the kind of crumbly sludge that not even a six year old would want to sled in. I look up to identify its source, and find that it is coming from a little yellow fish. There must be a camera trained on a fish tank somewhere, and when a DVD ends, this is where the tuner defaults. Was somebody watching a movie?

I have been in the hospital for, oh, about four nights I guess? But I certainly can’t figure out why everyone else seems so sure about it. After two sleepless nights at the hotel of belly pain, one of them involving vomissements and copious libations of sweat onto my pillow and sheets, it was time to stop pretending that I was going to make it through this without being hospitalized.

While I was already on quite incredible numbers of prophylactic anti-badstuff, when I got in they put me on even more. So now I am on vancomycin, fluconazole, levaquin, acyclovir, meropenem, cephalexin, cllindamycin skin cream, and chlorhexidine mouthwash! If you don’t immediately have a reaction to those two words next to each other, don’t worry about it. And I STILL have had a fever for days now. Everything’s just out of whack, and regaining its equilibrium is slow. They’ve even got me on IV nutrition, which is a trip. I can feel my guts going “wait a minute, no, no, no, you’ve got it ALL wrong, this stuff is supposed to be on THAT side!” It is easy to point to the drugs as causing the problem (“Hey Ahmet! All these American Hummers hangin around here, eh, you think they are really here lookin out for our best interest? Cause I ain’t so sure all of a sudden.”), but in my case, the peacekeepers really are the good guys, and are doing their job, and are going to win, with the help of the locals, who have started to rally. Tumor markers are in the normal range. My white counts are no longer dropping, and are expected to be back on their daily doubling curve by tomorrow. Platelet and red cell infusions have also sped the process, and further complicated filling out future health-related paperwork.

I was put on oxycodone as needed, and then a morpine drip, and then a morphine PCA (patient-controlled administration: the famous button!), and then a fentanyl PCA, which I had to ask them to turn down, because every time I would hit it I would wake up on another planet. I have been having great little nonsensical hallucinations, though. 10:00! Well, that’s when we cigar smoking three-piece-suit wearing railroad tycoons take our mid-morning nap, now isn’t it ol’chap? Off to the University of Chicago it is! Chicago or bust!

I don’t feel like I sleep much, but surely I do, as there is no other way to account for the time. Reading gets done at about a quarter of a page a day. Movies are best when they involve little dialogue, because there is nothing my brain does worse these days than decoding a bunch of people screaming at each other caught on poor recording equipment and played through tiny speakers on the other side of the room. The narcotics dictate a schedule of their own, and that combined with my recent severe drop in hearing acuity means that things are edgy – I sometimes have no warning when a nurse or my mother is going to do something, and I jump out of my skin in fright. I have to tell all my nurses and doctors that they have to speak slowly and clearly if then want to be understood, but they all forget anyway. I can’t really listen to my own music, because I fall asleep when I put it on, and then am awoken disorented and startled when the theme changes. Phone conversation is equally difficult, so I apologize if you’ve caught me ignoring your calls. I am not often in a communicative mental state, and even when I am, the effort to decode what you are saying and generate phrases of my own can literally put me out of breath. But this will all pass, and soon. And then I’ll do it again!

Hoosier

2007-05-15T19:55:00.000-07:00

Even here, nobody knows what a “Hoosier” is, so we can all stop losing sleep over it.

After a couple of days here, I am slowly getting used to our sterile, corporate apartment suite. Lacking a garden and any hope of charm, it has a number of redeeming features: it is clean, functional, and close to the hospital. And it has free wi-fi.

My mother, father, and I flew in on Sunday, and began both moving in and making headway in terms of treatment. I went in to the hospital, my new home-away-from-home-away-from-home-away-from-home (where do I live?), to get the third of many Neupogen (stem cell growth factor) shots. I was pleasantly surprised that all of the nursing staff seemed already to know who I was, and were all ready for me the moment I walked in the door. It has now been three days, and this remains true. I have not yet waited a single second in a waiting room! This place seems extraordinarily well-organized, which helps me feel like coming all this way was a good decision.

I got my central line installed yesterday, so I am back to being bionic. The tubes enter my body just above my nipple and visibly snake up just under my skin, looping over the top of the clavicle and down into the subclavian vein, following it into the right atrium of my heart. I am still sore from the procedure, and haven’t yet figured out how I am going to take a shower without getting the whole business wet.

I spent most of today in the hospital, the first of many such days here. Today, they collected the stem cells which will reconstitute my immune system after the chemotherapy. I spent a fair amount of time grilling people about various aspects of the procedure (how the machine works, how many cells they are collecting, how they are stored, etc), and slept the rest of the time. I got a call from the head of the transplant unit in the evening, relaying the good news that they had collected just enough stem cells in today’s collection that I wouldn’t need to repeat the procedure tomorrow. While I was happy to hear that things were going better than planned, I was not comfortable with the numbers. I had been told by a number of people who are involved in stem cell transplants that it was important to have plenty of viable stem cells in order for things to turn out well, and I was concerned that merely having “sufficient” numbers of cells to transplant was running an unnecessary risk. While the transplant doctor insisted that he believed that we had collected enough cells, he said that there was no problem with me repeating the collection tomorrow if it allayed my concern, and that he would set it up. On the one hand I feel kind of presumptuous second-guessing what is probably the most highly qualified team in the world for this procedure, and on the other hand, I don’t want to mess around. I am playing for every fraction of a percentage point I can get here, and if people are willing to humor me, I see no reason not to err on the side of caution. My immune system has served me pretty well up until now, and I would like it back, please.

hot beds and cold feet

2007-05-03T00:52:00.000-07:00

I came down with a little cold just after coming back from the hospital last Wednesday, and by Sunday, I had developed a nearly-constant fever. A real problem in people like me whose white blood cell counts are low is that it is very difficult to tell whether fevers are due to a benign viral infection that will pass on its own, or due to a bacterial infection that could quickly get out of control. I had been told to call in if I spiked above 100.5, and after some stalling, I let myself be cajoled into heading back to the hospital Sunday night. The trip through the Emergency Department went smoothly, considering, and I was in my own room three hours later. The pleasure of having a single room was a little dampened by the knowledge that only the people who really need them get them.

I am getting really tired of hospitals. They aren’t nearly as interesting when wearing a grey face as they are wearing a white coat. A hospital is a terrible place to be when you are feeling bad. From Sunday night until Wednesday morning I was moved between four different rooms, and got poked with a needle at least eight times (that I can remember). Once the fever broke, became more of an exercise in patience and acceptance than anything else. I had to stay until I hadn’t had a fever for more than 24 hours, and my white blood cell count rose back to a safe level. In the meantime, they cultured my blood and urine looking for bacteria, and dripped me full of antibiotics just in case. Luckily, my white count bounced back fast, my fevers stopped on their own, and they didn’t find any evidence of infection, so the projected five day stay only ended up being around three.

I had known that it was a possibility that I would develop just such a “neutropenic fever”, but didn’t really think that it would happen, because I have gotten away with being immunocompromised before without any real problem. It was a disappointment to “lose” these days of freedom, but better safe than sorry at this point.

Back at home, I have new worries. The side effects of yet another dose of cisplatin are becoming apparent. For a few weeks now, my feet have been cold/tingling/numb/burning, as if they have been splashed through freezing puddles for hours. Instead of thawing, though, day by day they seem to become a little more like damp cobblestones and a little less like feet. My ears have started to scream again, and for the first time in a long time, I had to plug my ears when the dog barked to keep from wincing in pain. Most terrifying, though, is that my hands feel slow. Typing is awkward. Writing is sloppy. I remind myself that I regained much if not all of the hearing loss I experienced after the first cisplatin regimen, and that I am not getting any more of that stuff, no matter what happens (carboplatin apparently has fewer of these kind of side effects). Following a good review paper I found, I started taking vitamin E, alpha-lipoic acid, and acetyl carnitine, and am looking into glutathione, glutamine, and N-acetylcisteine. Time to get back to the acupuncturist, too.

In the meantime, I am very happy to be home, and no longer immunocompromised. I still have a cold, and am still feeling pretty beat down, but I am getting over it, and looking forward to enjoying the next ten days as much as I can.

28 April 2007

2007-04-28T01:27:00.000-07:00

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

2007-04-18T16:37:00.000-07:00

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

2007-04-16T22:01:00.000-07:00

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

2007-04-11T12:08:00.000-07:00

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

2007-04-05T20:31:00.000-07:00

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

2007-03-26T23:38:00.000-07:00

A month of recuperation

2007-03-26T23:33:00.000-07:00

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.

the last day of chemo

2007-02-22T21:17:00.001-08:00

update from my mom

2007-02-22T20:47:00.000-08:00

Hello friends and loved ones,

Joshua's last chemo treatment ended today at Stanford! We are rejoicing that this is the last of the eight planned chemo treatments.

But, as many of you suspected, we are now at the point where planning for possible surgery is in process. The masses residing on his liver and near the rectum are still larger than 3 cm, which is the arbitrary size for removing what we hope is only necrotic tissue from the body after chemotherapy.

The reason for removing it is that while the nonseminomatous cancer cells are probably/hopefully all dead from the chemo, the teratoma cells, which were a component of the original tumor, do not respond to chemo. So while the teratoma (if any is present in the metastases, which there is no way of knowing) may not be dangerous now, it can become so later. Thus, leaving the masses may mean leaving the teratoma a nest to grow and become a problem further down the road.

The oncologist here has requested that the liver surgeons and the medical oncology surgeons be consulted on the feasiblity of surgery, since the locations of the masses are not simple to access, and also to hopefully coordinate different surgical teams so that only one surgery is necessary, instead of going in twice.

So while we are hoping that the necrotic tissue will miraculously all melt away before the next CT scan in 4 weeks, surgery might be on the schedule, probably sometime after March 26. We are not sure whether this will be in Palo Alto, or in LA. This decision depends on what we find out about the doctors: we are looking for the best team. If any of you have first hand experience with the surgical oncology teams/systems at Stanford, UCSF, or Norris, please weigh in. (Please, no rooting for DC or Boston!)

Josh is planning a trip to Hawaii with an old friend, and his oncologists agree that it's okay for him to travel mid-March. So, he'll be leaving for a week or so around March 15 or thereabouts, for a well-deserved holiday after nearly a year of cancer mishegas. Then he'll be coming back to either LA or Stanford, or UCSF?, for the surgery, assuming it's still necessary.

We've had a steady stream of family and friends, and amazing support through all of this. I want you to know how grateful we are.

We've received so many phone calls and lovely gifts from many of you, and I start each day with the intention of calling or sending thank you notes, or arranging to have lunch, and I am feeling guilty because I just haven't had the focus to do it: to thank you personally, and to reconnect in some way that resembles our past relationships and friendships. I hope you understand and that you know that I am functioning on a rather simple level, staying away from the computer for the most part, and not talking much on the phone if I can help it.

But as you know we are far from being hermits, and so if you are inclined to stop by, just do it. We'd love to see you in person. We are MORE OFTEN THAN NOT in party central mode,--Josh is, after all, a party animal--(though he is sometimes taking a rare, and, I might venture, a rather hairless nap, and is looking handsomely snazzy as a bald guy) but generally we are all inclined to visit. And, the hot tub awaits you. So, if you are near, and healthy, come by. And if not, please get healthy: we would love to see you soon anyway.

technical update: good news

2007-02-11T19:43:00.000-08:00

My oncologist somehow materialized from the stratosphere bright eyed and bushy tailed, and having read the CT, told me that what we had seen was likely dead tumor mass. It apparently can take some time for dead tissue to be cleared away, even after tumor markers fall. So there is no change in the treatment plan, which means the cycle happening Feb 19-20-21 at Stanford will be (fingers crossed, holy water sprinkled, baruchas said, offerings burnt, voodoo dolls poked, vestal virgins... um...) the end of it! And the best news is that I still have an excuse to have a little pot belly, at least for now. I am also thrilled to say that my PICC line (the plastic tubing which has been sticking out of my arm for the past three and a half months) was finally removed, and I have been taking normal showers, unencumbered by plastic wrap and stress about having to keep my dressing dry. Just standing in the shower, under the running water, is an incredible pleasure. Hot tub, here I come! Despite all sorts of continuing and strange body issues caused by the chemo, I am ecstatic with each baby step back toward normalcy.

the roller coaster continues

2007-02-07T23:27:00.000-08:00

I am back in LA, hooked up to four (4!) noise-making IV pumps, trying to ignore the tray of hospital food that makes me nauseous just looking at it, and pondering whether it is worth fighting with all of this tangled tubing in order to get myself into the shower.

While the tumor markers are both within the normal range, I had a CT scan on Monday evening in order to take a peek inside and see how things are going. The next day, a hapless resident, unfamiliar with my case, came into my room and announced the “good news!”: my tumor mass had reduced by more than 50%! It took a lot of self control not to punch him in the face, for this was not good news at all. In fact, it was terrible news. I had been led to believe that these last two rounds of chemo were basically overkill, in order to be absolutely sure that every last minute speck of nastiness had been killed off. I had begun to plan a vacation, and my re-entry into real life. The prospect of further rounds of chemo and surgery were extremely disturbing. I momentarily forgot, as did he, apparently, that he didn’t really know what he was talking about, and had no decision-making capability or responsibility. I freaked out for four hours, until the oncology fellow (further up the totem pole) poked his head in the room, and clarified things a bit (hah)”: Apparently all of the junk that is still apparent on the CT could be/but we don’t really know/might be/is probably just dead tumor, or scar tissue, and in any case decisions will probably/maybe be made based on tumor markers, which are low. But the real decision maker, the head oncologist, is in Paris for a conference, and doesn’t want to commit until he sees the CT for himself on Friday. No matter what the treatment plan becomes, this has all been unnecessary, as far as I am concerned. I understand the desire to keep a pesky patient/medical student informed about the latest results, but there also needs to be an awareness that information without context can be damaging. It was a reminder that the information contained in a patient’s chart is more than a series of chronologically organized data; these cold figures in fact represent real life dilemmas for a real person, and that the doctor must take into account the patient’s prior experience and expectations before waltzing in and dropping bombs.

This latest vague and difficult news does not lend itself to planning and prognostication. At this point, I am attempting to remain calm while waiting for more information, and trying to remain focused on the outcome that I want: to be done with this current ordeal in three weeks, and to get back to my life.

I will be out of the hospital come Thursday afternoon, with no cisplatin and amifostine to weigh down my exit. Hopefully this means a quicker and less miserable recovery. If it looks like I will be able to care for myself, I am tempted to send my mother back on up to Palo Alto and remain here in LA for the week, to re-inhabit my apartment and my life, to begin to stake some claim on being an independent 27 year old again.

transitions

2007-01-23T22:09:00.001-08:00

The end of one thing is only the beginning of another. My three year relationship with Amelie has drawn to a close. While this is clearly not a good time to be rocking the boat, I decided that the stress of the status quo was more dangerous than the risk of moving on. The breakup was very traumatic for both of us, and the outcome looks like it will be much less amicable than I had hoped. It was a difficult decision to come to, horrible to actually drop the bomb, distressing to know that she is taking it badly, and sad to think about all of the things about the relationship that I loved, and will miss. But it was the right decision, and I feel that I did it honestly and lovingly (even if she doesn’t). It is deeply saddening to lose such a good friend. I can’t afford, however, to dwell on it right now. I have to remain positive, and look ahead. I am on to a new phase in my life, with new dreams to be dreamt and new plans to be made.

To give Amelie room to move out and move on, and myself a positive, controlled environment, I have relocated to Palo Alto again for three weeks, and am currently doing round 6 of chemo at Stanford. My next round will be in LA starting February 5th, and I should be down there a few days before. If you are local (LA), be prepared for a party sometime the weekend of Feb 2-4.

My white counts mysteriously having bounced back up to practically normal levels, my doctors decided that travel wasn’t too risky, and so I was cleared for a whirlwind weekend trip to New York with my parents. While going to New York is always exciting, the impetus behind the trip wasn’t pleasant: we were there to attend a memorial to a dear friend, Jeff Hoyer, who unexpectedly died of a heart attack. Huge, wild, roaring with strength and intelligence and creativity, for me he embodied New York. His energy careens on through the pulse of the city.

Working as an independent computer consultant to support his real life as an avant-garde musician, Jeff didn’t have health insurance, and didn’t heed warning signs or his friends’ admonitions to seek help. My two cents: Schwartzie’s health care plan is BS. Somebody like Jeff wouldn’t have gotten employer-based insurance, and he wouldn’t have gone to see a doctor because the minimum $5000 deductible on the individual plan wouldn’t have done squat for him until he had a diagnosis. It is a huge barrier to care. There are lots of other problems with it, but now is not the time. I’m sure I’ll be in the mood one of these days.

going... going...

2007-01-22T22:28:00.000-08:00

mangy rat phase

dad's idea: duct tape

test strip

mom's idea: lint remover

the inevitable midway photo op

the result

Addicted to good news

2007-01-11T06:33:00.000-08:00

It is hard to retain perspective. I am so used to things going spectacularly well that even moderately good news is a let-down.

Monday morning I showed up for my pre-chemo blood draw and appointment with my oncologist. Since the blood work takes a few hours to get analyzed, we discussed what the plan would be depending on the results. He told me that since my tumor markers had been so low the previous week, there was a possibility that they would have fallen into the normal range by today, allowing us to skip the cisplatin (the drug that causes the most short- and long-term side effects). When we came back from lunch, the nurse told me my results: the tumor markers had continued to fall! It took a few minutes for me to explain why I wasn’t happy with this apparently great result. While they have fallen, the markers are not yet low enough to consider lightening the chemo load, which means not only another cycle of feeling awful, but yet more permanent hearing loss.

I am learning a lot about medicine these days. I have often felt, as I am sure everyone has, that my doctors were trying to leave the room as quickly as possible. I have always just assumed that they were busy, and that since I was basically healthy, that it kind of made sense that they wouldn’t spend a lot of time with me, because they had more pressing matters to attend to. When I became a cancer patient, I immediately assumed that all of a sudden I was one of those patients who was taking up their time, and that I deserved every moment of it, and more. I realized today that despite the gravity of my situation, my case is still on the lower end of the danger scale. There is a huge amount that could go wrong, and does for a lot of people. Infection, secondary cancer (caused by the treatment), both at once… It is these incredibly difficult and complicated cases that motivate, and yes, interest, my doctors. Once my diagnosis was made and a treatment plan decided upon, there was not a lot left for the doctors to do, besides be on the watch for serious side effects, and plan contingencies if things go wrong.
The medical school system is set up to cultivate this interest in extreme pathology. We spend what has seemed to be a disproportionate amount of time learning about rare but terrifying diseases, as opposed to more common but relatively benign conditions. I think that this emphasis on the dangerous and uncommon is responsible for much of the dismissive attitude that many patients feel from their doctors. During my studies, I often have found myself wondering things like “how is it that I know about temporal arteritis, but I still don’t really know what causes a headache?” These days, though, I understand a bit better why the emphasis has been placed where it is. While they are common, most headaches just hurt; temporal arteritis can make you go blind. Somehow the vastness of the gap that separates discomfort from debilitation was less distinct when I was healthy.

On the other hand, I also understand better the value of the time we spend learning how to listen to and communicate with our patients. There are plenty of supposedly qualified people around here who are absolutely incapable of answering questions directly and clearly, which causes me to lose confidence in the competence of my medical team. This stress is profoundly disturbing.

I am also learning much about the boundaries of medical knowledge, and the difference between clinical work and what we are taught. My absolute neutrophil counts (the most important number for assessing my immune status) have been all over the place, and nobody has been able to give me a clear explanation of why. It turns out that nobody really cares! The bottom line is that since my cancer is potentially curable, they are willing to push my immune system to the point of danger, because the likelihood that a secondary infection would kill me is less than the danger posed by not finishing off the last bits of tumor that may be hiding out. So while it is frustrating and not confidence-inspiring that nobody can tell me why the cell counts are what they are, I am realizing that the point-A-to-point-B logic that we are taught in medical school is really just the first step, and that in the clinic, understanding the system is only useful if it helps the patient. It is being able to know when you need more information to make a good decision that is important, not being able to reconcile the results in front of you with what it says in the textbook on your shelf.

vacation

2007-01-07T23:47:00.000-08:00

I apologize if I’ve caused some consternation with my lack of recent postings, but I’ve got to be in a writing mood to write, if you know what I mean. I am back in LA, beginning round 5 tomorrow at Norris after having spent three weeks at home in Palo Alto, getting treatment at Stanford.

It is difficult to be back after such a wonderful vacation. I doubt I have ever had such a long period so filled with old friends, laughter, and amazing food. My mother cooked up a storm. People came to visit from across the country (the fabulous Elena Byhoff being one of them, who specifically asked to be included in that way so that searching Google for “fabulous” and “Elena” would point to her – not that the rest of you aren’t special, you’re just less demanding). We threw a twelve-hour blowout house party on the 30th, complete with fire dancers, drummers, lots of great wine, and a healing circle. Walks in the woods, a trip to the beach. Playtime in San Francisco. Nostalgia in Berkeley. And finishing it all off, a three-day slow drive down the state with my family, staying in Paso Robles and Ojai.

Even the week of treatment that I did up north was relatively easy. Being able to go home at night made all the difference. Also, the side effects of the ACE regimen were not nearly as severe as with the POMB regimen. In fact, one of the side effects is apparently amnesia, because I can’t really remember what happened. I think I was mostly just bloated and blotto. Couldn’t really do… much… at… all… and thinking… was: slow. I also got Neupogen shots once a day for four days to boost my trashed immune system (recombinant G-CSF, for those who care and know what that is), which caused some nasty bone pain in my back and pelvis for a couple of days. This was expected, because the marrow in those big “flat” bones is where most of the immune cells are produced. I had a lot of good news: I am unexpectedly not severely immunosuppressed, which is a very good thing considering the gigantic holiday parties I went to. The even better news is that my tumor markers are within striking distance of normal! The reference ranges are around 10 (don’t worry about the units), and the markers had been in the thousands and tens of thousands. They were both around 35 last week, a huge drop! Does anyone else think it is strange that I had to request that my blood work be done? Don’t my doctors care to follow these things closely? OK, maybe it wouldn’t affect the treatment plan, and it costs money, but isn’t my peace of mind worth it? Sheesh.

home: the lap of luxury

2006-12-24T16:37:00.000-08:00

I am home for the holidays, and couldn't be happier. Sitting by the fireplace with my parents, drinking tea, eating my mother's fabulous cooking, going on walks in the woods with the dog, seeing old friends - it's exactly what I needed to recharge and relax before starting my ACE regimen at Stanford on Tuesday, December 26. This round will be easier by definition because it will be outpatient, which means that I will only have to physically be in the hospital during the day, and will be able to crash at home at night. I have no way of knowing how I will tolerate the side effects, though. From the doctor's perspective, I can understand that since everyone reacts differently, they can't give me much information. But from the patient's point of view, this is shocking. What do you mean, "you don't know"?! That's ridiculous! How am i supposed to prepare myself? Jerks!

amifostine and woody allen

2006-12-22T20:15:00.000-08:00

sunday, december 15, 2006

my hands shake and tingle. my ears scream. my stomach flutters. i try to ignore, and to enjoy being back at my apartment, on my couch, with no constantly beeping IV machine, no nurses coming in once-an-hour to take vital signs... a multitude of insignificant but comforting specks of control over my environment combine to make all the difference.

yet more unquantifiable risks to be weighed against fear. should we give me amifostine, which supposedly may help protect my ears from long-term permanent hearing loss from the cisplatin? the mechanism by which it supposedly protects sound-sensitive cells from being killed by the chemo sounds suspiciously non-specific. why wouldn't it prevent the cancer cells from being knocked off as well, thereby nullifying the chemo's intended effect? is there some kind of differential effect based on dosage? how do we know what that dose is in my case? this drug is not usually used for people in my situation. why not? because we mostly give this kind of harsh chemotherapy to older guys who are going deaf anyway?

i let myself be convinced by unconvincing arguments. once again, trust had to be placed in the individual oncologist's experience over the data, breaking the "rules" of how we are taught to approach medicine. once again, i am reminded of how different the whole system looks from the patient's side. statistics become practically meaningless when it's your own life you're talking about.

whatever the long-term effects or lack thereof, the amifostine was horrible. while it would be easy to blame a surreptitious trip to the taco truck (from which my oncologist caught me coming back, wag of the finger), the timing of the misery points squarely at the drug. starting fifteen minutes after the injection, i spent all afternoon last thursday retching my brains out, before being sent home to three more days of nausea. i contend that my visit to the taco truck merely made the whole business less pleasant than it would have been had i, for instance, been eating ginger snaps for lunch.

suffering is highly overrated, my friends. i really think i could develop all the empathy i needed in life with about 24 hours of misery. four days on end is really overkill.

many months ago, we bought tickets to see woody allen and his new orleans jazz band at UCLA's royce hall. i don't have a particularly close affiliation with woody allen, nor with new orleans jazz music, but i just felt like i had to go. despite the queasiness and the muffle-headed, fuzzy hypersensitivity, it needed to happen. it was a statement to myself, an affirmation. i made it. months ago, i planned on being around and going to this show, and despite all of the crap that has happened to me since then, dammit, i'm still here! blow, woody, blow!

round 3

2006-12-13T23:36:00.000-08:00

i slide slowly once again from almost-normalcy into the chemically-induced hazy, woozy, uncomfortable, time-warping, personality-distoring state. mercifully, i have little specific memory of how this was the last time around. my brain hasn't been very efficient at remembering much of anything. then again, it all comes as a kind of vague surprise each time.

the big news: my tumor markers are falling along the half-life curves! let me explain: my tumor secretes a couple of different compounds into the blood which allows us to follow its status. everything in our blood - red blood cells, hormones, etc. - has a "half-life", which is a fancy way of measuring how long something circulates around before getting broken down and excreted. my markers have fallen at a rate that indicates that they are no longer being produced at all. now we have biochemical evidence that backs up the observation that my belly is shrinking. the chemo is working!

while this is great news, it doesn't change anything in terms of the treatment plan. we are still going to smash away until the end of february, to improve the chances of having killed it all. i can't say that i am looking forward to it, but i am incredibly relieved that things are on the right track. when the oncological team comes by each morning to do rounds, they have little to say, which is a very good sign. "feeling OK?" "yep." "great. everything is looking good! any questions?" "nope!" "OK, see you tomorrow!"

i am thrilled to say that i am going to get a much-needed break from LA. i got lucky in terms of timing: the next cycle is a different chemo regimen, and it happens to be one that is given routinely at most cancer centers, as opposed to the highly specialized regimen i have been on up until now. we have set things up so that i can do the next cycle at stanford, which allows me to spend the holidays at home in palo alto. i will be heading north this sunday, recuperating over the following week in the comfort of home. on the 25th, i will start treatment as an outpatient at stanford for thee week, and then have another week to recover before heading back to LA and beginning again as an inpatient at norris. this is a good thing from top to bottom. i get to have a change of scene and routine, feel like i am having some sort of holiday, catch up with bay area friends, spend time with my parents. amelie will be heading home to paris, which will give her a much-needed break from the daily stress of dealing with all of this drama.

correction, for the record: the financial situation is not as bad as i made it out to be a few entries back, though it remains ridiculous. there is a $3500 cap on out-of-pocket expenses for the school year, but this does not include psychiatric/psychological services, which have their own $3500 cap, nor does it include medication, which has no cap and a ludicrous co-pay system. one question that remains: does chemo count as a medical expense, or as a pharmaceutical expense? this stuff can't be cheap.

i'm pregnant!

2006-12-10T16:22:00.000-08:00

no, no, not amelie, ME! my tumor secretes human chorionic gonadotropin, which is what pregnancy tests measure. it's name is toomie (the tumor), but please, don't send flowers. toomie will not be with us for long.

a much-needed weekend off in the desert

2006-12-10T16:01:00.000-08:00

hope springs resort. highly recommended. appropriately named. these days, what used to be cheesy can be surprisingly sublime. like going to joshua tree.

belly shrinks!

2006-12-07T01:08:00.000-08:00

alternativity

2006-12-06T00:03:00.000-08:00

i have emerged from chemoland! it really took until tuesday to start feeling human again. of course all sorts of strange things keep happening to my body, some predictable (night sweats, constantly ringing ears, shortness of breath on exertion), some not (random crashes of piercingly loud sound, sudden moments of flu-like malaise, random body pains), but on the whole, i am back to being a relatively functional person.

i had my first acupuncture session this morning, and it was a truly wonderful experience. i had few preconceived notions about acupuncture, except that its precepts do not make sense when approached from the western medical paradigm. i still have no idea what kinds of improvement or results to expect from continued treatment, nor can i say that i noticed any particular change following the short needling and moxa-burning this afternoon. that said, it was such a great experience that there is no question that i will be coming back for more.

it was an entirely different kind of health care than we are taught in medical school, or than i have ever experienced. it was the first time that i have ever felt that someone was taking ALL the time that was needed, to cover ALL the bases, in order to take care of ME, as a whole. oh! THAT'S what wholistic means?! i thought it had something to do with the vitamin aisle at whole foods! the acupuncturist, neil gumenick, was such a perceptive and wise interviewer that in the end, i don't CARE if the needles are anything more than placebo or if the incense does anything more than smell good - he is the best talk therapist i could hope for! the intake interview alone took three quarters of the allotted two hours, and HE asked ME if it was OK if we went a little over. the place was so comfortable, it made me realize how horrible hospitals and doctors offices really are. these people are obviously professionals, working from a highly developed and subtle knowledge base. the fact that i don't understand the system only makes me more interested in what is going on. i was also told that i presented a complex set of challenges, and that it would be a learning experience even for an accomplished acupuncturist. he gave me a book to read, and i am excited by the opportunity this opens to learn about a different culture of healing.

back at home

2006-11-30T21:48:00.001-08:00

i just returned from the hospital, a day early! i thought a bit about what was going on, and realizing that there was no true reason for me to spend another night there, i made enough noise and kissed enough ass that they discharged me. there is something strangely addictive about being in the hospital that i am happy to have forced myself to escape. the bed is comfortable and adjustable, there is a table that blocks one side of the bed, the IV tree blocks the other side and is a pain to move around, nurses come to deliver anything at the touch of a button, and there is not really anywhere to go anyway, so it takes a lot of energy to motivate to get up out of the bed.

it is hard for me to describe how i am feeling. everything is so variable. i get tired all of a sudden, and then feel awake just as suddenly. i get waves of just feeling generally gross, but without any symptom specific enough to describe or treat. i have pangs of pain in strange locations, which come and go randomly. most constant, i think, is really just being in the mode of thinking of myself as a patient, and not as ME. it is very good that i was able to come back home even a little early, and regain some minimum semblance of normalcy.

the week at the hospital went better this time, everything was smoother and more organized, and i finally got set up with a competent hospital social worker, who not only comes up to my room, but whose services are included in the price of admission. side effects so far seem more mild than the first time around, but then again, it did take a few days for the cisplatin to wreak havoc, so i can't claim victory yet. they've switched me to what my night nurse linda calls the "beverly hills" anti-nausea medications, because the standard compazine+reglan had been so miserable. i can't wait to see the bill.

speaking of bills, one of the shocking things about this ordeal is the total disconnect between the delivery of services and the costs that they incur. none of the doctors or nurses have any idea nor do they care about what anything costs their patients. granted, most of us at this hospital have "good" insurance, but my "good" insurance only covers at 90%, and i can only make the roughest of estimates of how high the total will run in my case. $3-4000 a night, something like 25 nights, that's around $100k, not including any of the scans, all the medication, and office visits, which can't be cheap. i am conservatively estimating cracking $300k by the end of this, which means that $30k of that is mine to pay. outrageous. i am amoung the wealthiest and best connected people in the country, and this is a real burden! what about everyone else?! i probably saved myself and the insurance company a good chunk of money by pushing for being discharged a day early. while i guess it is nice that i don't feel pressured by the hospital to get out as quickly as possible, this seems like the other extreme.

round 2

2006-11-30T21:17:00.000-08:00

monday i entered the hospital for round two of POMB-ACE chemotherapy. as a reminder, here's how it works, in more detail than some of you care about, and less detail than intrigues some others:

this round 2 of 8 cycles, each of which lasts 2 weeks. i have 3 rounds of "POMB", which consist of vincristine, methotrexate, bleomycin, cisplatin, and seemingly hundreds of liters of saline. each round of POMB starts on a monday, and i am in-patient at norris/usc cancer hospital until sometime during the day on friday. i then go home for the weekend, the week, and the following weekend, until beginning the third round of POMB on monday, december 11. on december 25, i get "ACE", which is actinomycin D, cyclophosphamide, and etoposide. this round is out-patient, though i come in every day for a 3-4h infusion (which is probably more like 8h in this hospital with all the setup). there may be some possibility of doing the ACE regimen at another hospital, which opens the intriguing idea of heading up north for a bit, but that hasn't yet been ironed out. if my tumor markers are still high (a bad thing), then i get another in-patient cycle of POMB starting january 8; if the markers are normal, i stay for the same amount of time, but they don't give me the cisplatin (the big nasty P for platinum), which makes it "OMB". on january 22, i will get the out-patient ACE regimen, with a CT scan at the end. on february 5, i get OMB, and on february 19 i get ACE. we hope that there is no "after that...".

i have been feeling pretty good for the past few days before re-entering the hospital, and feel especially happy having spent them well, with friends and fun. my belly seems to have shrunken a little, maybe, and i am able to eat larger meals, and even get hungry at odd hours (i just ate four of grandma's brownies!). i am off the time-release morphine, which i just don't need right now, and as a result i am off all of the stool softeners and laxatives that went along with it, though my bowels are beginning their re-adjustment, which involves a definite and very uncomfortable overshoot. i even took a short nap this afternoon, which hasn't happened in a long while. i still seem to need sleeping pills for the night, though maybe tonight...? it is a relief to feel that despite the extremity of the situation, in general, it is going as well as it can.

i am back in the exact same room as last time, with many of the same nurses and doctors knocking on my door at all hours. the routine of the hospital is to be humored. i chit-chat with the night nurses who come in to change the saline, give me pills, and quiet my frequently demanding IV machine which beeps its displeasure. i guess at my weight before letting the nurse who keeps all of the vital statistics put me on the scale, and once she's taken my baseline blood oxygen measurements with that little glowy red thing on my finger, i hyperventilate to see if i can get the numbers to go up (it works, after about 20 seconds). i distract the over-worked second-year resident, sam, into spending half an hour with me at a time, talking about symptoms and coping mechanisms. the orderlies who bring in my food and take away cluttered trays have to negotiate a room teeming with procrastinating medical students who have come to visit. i have hung up a japanese scroll of swimming fish that florence brought for me, and my yellow submarine magnets will surely grace my metal door soon. walking around the ward and peeking into people's rooms, it is clear that i am somewhat of a novelty as far as patients go. i don't think that treat too many young, wisecracking medical students, with french girlfriends, mothers who stay the night, requesting rooms with wireless internet so he can run his blog (no luck: the two rooms that have it by chance are already occupied; i have to mosey down to the quad to post things, which is why it can take some time to post when i am in here). i do what i can to stay amused, and part of that is amusing others.

i feel conflicted about what to do with time like this when i am feeling good. on the one hand, the proportion of time that i spend feeling bad is so large that i think that i should take advantage of my "up" time to just relax and recuperate and enjoy life. on the other hand, the administration here at the medical school has done a good job at reinforcing the idea of professionalism, that being in medical school is less about learning a bunch of facts and being able to take multiple choice tests than about learning to be effective and engaged in the health care system. with this in mind, i feel an obligation to get something out of this experience other than merely making it through to the other side. it's not fair that this is happening to me, i don't deserve it, there is no master plan that put me on this path, but nonetheless i feel like i should make the most of these circumstances, and do what i can to see it as "opportunity" every now and then. there are so many issues that are brought up by this experience: so many glaring shortcomings in the system that deserve identification and possible future investment of my time, so many drugs that i am taking which i don't know enough about, so many alternative therapies to be investigated, in short, so many "productive" things that i could be doing with this time. i even thought about interviewing applicants to medical school from my bed - what better situation in which to evaluate someone's fitness for medicine? (what an intimidating interview! they certainly wouldn't forget the experience, that's for sure!).

celebrity

2006-11-24T22:32:00.000-08:00

i have been profoundly moved by the generosity of spirit i have witnessed on the part of so many people. the outpouring of love has been stunning, and truly beautiful. i feel like i am surrounded by an immense cushion of affection, and you have all helped soften the blow considerably.

i had an awkward thought, though. it can't last. it's just a fact that you all are living full and busy lives, and that mine will remain dreary for a long time. the shock of bad news draws people together in spectacular ways, but the shock is transient. i would be willing to bet that my "celebrity" status has reached its apogee, and that the circle of people who remain engaged will quickly tail off. i am writing this for a number of reasons, and one of them is to tell YOU that i understand, and that you don't have to feel guilty about it. another reason to write it down is to prepare myself, to realize that it is natural, and not personal.

please don't get me wrong. i am BY NO MEANS saying that i want fewer visitors, loving comments left on this blog, warm emails, or loving calls. your support is absolutely wonderful, and brightens my days. i am merely trying to prepare myself for the long haul. this thing is going to last a minimum of four months, plus whatever else may need to happen medically, plus the time it takes to put my life back together (whatever that means). i don't know if this is a good idea psychologically, but it seems to me that i will eventually need to stop thinking of myself as in a crisis, and "normalize" this phase of my life to whatever degree possible.

not that i know what i am talking about. i have only just finished the first of eight two-week cycles, and while i am not feeling perfect, i have just had a couple of relatively comfortable and normal days, so it is easy for me to sound strong. i know that as the chemo really takes effect, and as my immune system gets pummeled, that i am in for a lot more unpleasantness. i can't imagine that the nastiness of the side effects will abate, and they will more than likely worsen.

so maybe what i am saying is that i hope that you will pace yourselves. i will need your love and support for a long time to come, under less shocking but possibly more difficult circumstances.

again, thank you all, from the bottom of my heart. i love you right back.

getting old

2006-11-23T11:50:00.000-08:00

i get told a lot that this experience will one day make me a better doctor, and i am even starting to believe it.

all of a sudden i feel a lot of sympathy for old people. for the first time in my life, i feel like i really can understand. the similarities are stunning: constant dependence on others; discomfort that will not go away; feeling like there are things that i used to do that are no longer possible, that who i was no longer exists; distrust of my own body; complaining all the time; boredom; uselessness; feeling like the world is going on without me; constant use of drugs that have unpleasant side effects; doctors who might be trying to help, but really can't make you feel all the way better; insomnia; hearing problems; isolation; emptiness; loss of identity, and gaining a new identity: that of "being sick".

a fabulous night

2006-11-22T02:05:00.000-08:00

every positive event seems like an accomplishment, something to take note of and value and cherish.

after a day of compazine/reglan induced hyperkinesia, tinnitus, and general craziness, i had a fabulous night filled with friends and love. jake, florence, paula, jehangeer, neil and jessica, caleb and coco came over, and flooded me with distraction, which is the only solace. i am happy to be active when i can, not only to move but to DO. we all walked to fatburger where i had three fries and a sip of lemonade-iced tea. tonight was the first night that i have tried getting high, and it was really a great decision. i was scared that it would put me in a bad head-space, but it allowed me to relax, to talk with people, to laugh my ass off, to introspect.

this is what i imagine it is like being pregnant: one is miserable, for a defined period of time that is not alterable, and yet the end result is something deeply desired (in this case, being done with it all and getting back to reality).

maybe the best description i have come up with so far is this: imagine that you are SUPER constipated, and you just KNOW that once you let things go, the whole outlook on everything will change, but until then, every moment of waiting, there is a gigantic distraction to rationality that is omnipresent. but this plug-up is going to last a while. the discomfort is so big that at every moment i need to find a way to occupy myself with some task. i must develop many different ways of coping. meditation. painting. guitar. yoga. dancing.

insanity

2006-11-21T18:51:00.000-08:00

i just cant get over how much of a rigamarole it is to find a psychiatrist who is also able to speak emotionalese. granted, its thanksgiving and all, but craziness respects no calendar (remind me of that when i am on a psych rotation sometime). if anyone knows any psychiatrist+psychologists who take blue cross and are near the hollywood area, i need to talk with them! how can it be that they are so hard to find?

i awoke today with the strangest jittery clenchy jumpy cannot stop moving must keep moving keep moving every second must! it was terrible. a psychologist recommended by a friend dropped by at 10, and we talked for an hour as i jumped off of the walls. after many phone calls, it looks like it is the compazine+reglan that are giving me these "extra-pyramidal" symptoms, and I have stopped taking them altogether. now i am hoping that i just have to wait for my liver to catch up with this decision and get them out of my system. benadryl was recommended, and though this makes no sense, it helped a bit. i would rather be glurky than have parkinsons-like symptoms.

forcing myself to be social is a must.

slow return

2006-11-20T09:18:00.000-08:00

while i atill am not really sleeping, despite a serious intensification of my sleepytime meds, i have to say that things are looking up - i had a "normal" morning, if you can call it that, since i haven't had a normal morning since the last time i was jet lagged, but at least feeling reasonable, not overly keyed-up for no good reason, nor like my belly was going to explode at any minute. i am just going to have to get used to napping in twnety minute spurts whenever my body decides its time, and to ignore the hot flashes and agitation that comes with a totally mixed up endocrine system. it was nice to be able to just smile, and be easy, and relax, if only for an hour. my guts have decided that it is time to kick up some more dust, and thus i am writing, a way to distract and dissipate some of the errant energy fluttering around.

i am jumping through hoops in order to find some psychological services, which is really ridiculous in a situation like this. doesn't it seem like this kind of thing would just appear on my doorstep, all taken care of? if there's one thing sick people shouldn't have to deal with, it is making sure that they dont drive themselves crazy.

2006-11-19T10:17:00.001-08:00

pictures

2006-11-19T10:12:00.000-08:00

sleep

2006-11-19T03:07:00.000-08:00

the day passed so slowly, tucked between my groin and my liver. any change in orientation threatens upheaval, and every position attained is as unsatisfying as the last.

i felt two seconds of tingling in my right fingertips, just enough to scare me. peripheral neuropathy on its way? i may need to get back to painting and drawing my ultra-precision psychedelia while i still can.

we decided that today was going to have to be a day between just the two of us, which really was mostly to give amelie a break, because i am so incommunicado that she ends up having to do the entertaining if there is anyone else around. while it was nice to be alone, finally, the two of us, lack of sleep plus lack of comfort made for a vague and frustrating day for me, one that i will be happy to avoid repeating. activity is necessary for sanity. reading. writing. cooking, guitar. painting. whatever. life must have goals besides surviving, even if they are short term and inconsequential.

we slurped down some chinese medicinal soup made by a friend's mother, which was exactly what i needed to be eating. what is it, anyway, about chicken soup? bring on the voodoo, man, i'll take all i can get.

at around 9pm i couldnt handle it anymore, and took an ambien to check out for the evening. i've been in a semi-dream state ever since, which is lovely since for some reason i am not in pain or discomfort for the first time in ??! either my body is getting it's shit back together, or this is the perfect drug cocktail.

vibrations

2006-11-18T18:06:00.000-08:00

The world vibrates, it is divided into what is inside and what is outside by bowels. Sometimes my head is included in one category, sometimes the other.

While last night was not too uncomfortable, I didn’t sleep either, until about 6 when I let myself be convinced that putting ambien into my system wasn’t the straw that would break my liver’s back. The meds seem to be effective, at least as far as preventing outright nausea and pain, and the flow has remained largely mouth-to-anus, which is what really counts.

Everyone around me has invested so much of themselves into making this work, I am in awe, and humbled, and loved, and sad that it has come to this. How much of my own discomfort can I ignore, to bring less to others? How much of it am I making up to begin with? This sum seems large when I am feeling good, and then evaporates with the next pang and swim of the labyrinths. I couldn’t feed myself, was at the point of vomiting at the table, but five minutes later, Amelie could feed me as I was lying down, and it tasted wonderful.

Writing seems necessary, even as the inanity of the words accumulate on the screen. My head is so fuzzy that it will be a miracle if anything of interest materializes out of these meanderings. The idea was to have a blog, but who wants to read this, simple recounting of events and blurry scenes that go nowhere? I am used to holding myself to a higher standard. In a situation like this, though, the DOING is maybe more important than the result. So those of you who area reading this, keep that in mind. I don’t really know who this is for.

the first week

2006-11-18T18:05:00.000-08:00

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.

intro

2006-11-18T17:59:00.001-08:00

Last April, my loitering hand came across a bump in the night. Hard, painless, irregular, and projecting out from the otherwise smooth surface of my right testicle, as a first-semester second-year medical student, I “knew” what it was, or thought I did. The resident at Family Medicine the next day didn’t feel anything, and dismissed my concern as a symptom of the well-known hypochondriacal Medical Student’s Disease (MSD). I was unconvinced, and demanded to see the radiologist, who likewise regaled me of stories of his own MSD lymphoma as he smeared my nether regions with cold gel and started smooshing around with the ultrasound transducer. At a certain point, his story became fragmented, hesitant, and then stopped altogether, as a frown crept across his face. There was no easy way to tell me. I had been right. It was a solid tumor. He walked me back over to Family Medicine in order to make up for his faux pas and to ensure that I got taken seriously on the other end. As he spoke with the attending in the hallway, the original resident peeked her head into the room, beamed a great big smile, and trying not to laugh, asked “So? What did the radiologist tell you?” – “That it’s a tumor” – “(snicker) No, really. It’s nothing, right?”

She got straightened out. I received lots of apologetic voicemails from her over the next few weeks, which I never returned. I had more important things to take care of.

To make a very long story very short, everything pretty much went peachy. After surreal trips to the sperm bank in West LA, much organizing, agonizing, and weasling, I got the first surgery out of the way within a week. I went on to finish up the school year (with a lot of help from my friends), flew up to the Bay and had the second surgery, a retroperitoneal lymph node dissection, done at UCSF at the beginning of June. I was back in school, placing ever-more complicated pieces of a laser-cut jigsaw puzzle of life together, when a routine CT reminded me that it was not normal to have developed a beer belly within the span of a couple of weeks.

And blammo! Suddenly everything, everything, everything, is up in the air.