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.
Monday, May 4, 2009
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3 comments:
Hello Josh,
Great to hear from you. Progress sometimes is being made in steps and it looks like that is what is happening this time. Moral is often the trigger, so keep it up and continue giving news through your blog so all your friends can focus and help in your quest.
Sending you my continued support from Tahoe.
One foot in front of the other, giving it your all...you continue to inspire and amaze with your strength and determination. Sending you my best wishes from the banks of the Mississippi!
I've read every word from the beginning of your journey with cancer. (There were many words I had to look up in the dictionary!) It's not the individual words in your story, but the collection of thoughts and perceptions that speak loudly, the essence of you~a strong, vital young man who will surely lend some of his strength to others. Healing thoughts sent your way from the green mountains of Vermont.
Vickie
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