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.