Success!

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

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

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

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

Back in Business!

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

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

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

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

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

Up to the minute info

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

Live starting in a few hours!

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

(man, am I HUNGRY!)

Optimism

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

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

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

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

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

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

3.6

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

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

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

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

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

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

3.4

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

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

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

3.1

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

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

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

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

Next?!