My delightful new assistant uses a delightful expression which she says she picked up from her Brit husband. When reporting that some issue, usually thorny, has been resolved, she pronounces it “Sorted!” After a month of what has seemed to me to be a chain of increasingly obfuscated emails and voice mails by and among various doctors and their offices, I had hoped that after a phone conference with the lead Dana-Farber doctor, I could pronounce my treatment plans to be “sorted” and that everyone would be on the same page going forward.
But no. As my long-anticipated phone call unfolded, I learned about communications the doctors had had but not shared with me and I became increasingly dismayed to read between the lines that the divide between the two doctors is much greater than I had realized. Here I had been waiting for their analysis on the test results and answers to my questions, and for the opportunity to ask outstanding questions that couldn’t – or wouldn’t – be addressed earlier, and instead I was hearing the backstory to the cryptic emails that had been, quite honestly, confusing and – okay, I will say it – insulting to me. I worked very hard to stay calm and focused to not let my growing annoyance and frustration with the whole situation get in the way of maximizing every second I had on the phone with him, because he, after all, was the doctor who was actually giving me the kind of information and advice that I gotten on an airplane to get.
I guess the best way I can summarize a very complicated situation is to say that we are all guessing and no one really knows what the best approach is. The world expert says he has never seen a case like mine. Physicians operate from their own bases of knowledge and experience and there are genuinely different philosophies, based on theories. But when it comes down to it, they really don’t know very much at all yet about Waldenstrom’s, and even the so-called current frontline treatments for which the patients potentially pay heavy prices in side effects aren’t very effective. Complete remission is statistically quite rare.
Doctors are more used to dealing with patients who want to abrogate their decision making responsibility instead of patients who want rationale and not merely conclusions. I understand that they have their own reasons for not wanting to get into the harshest of realities with patients and their families, but I have my own sensitivities about doctors not telling me things that I wished I had known earlier and that I found out through my own research. I routinely read the orders and nurses’ notes in my own chart at the hospital and get copies of every report (my notebook is already 3 inches thick). I have learned over and over and over again that you must be your own advocate or your loved one’s advocate, because no one, no one, no one else, will do that for you otherwise. But the process is soul-eroding, and at a certain point, enough’s enough.
The upshot is a compromise approach. Like all compromises, there is something in it for everyone, but no one is happy about the rest. Further testing about my platelet deficiencies is on hold and I resumed chemo today, but on a schedule that is “lighter” than the one I had before, which hopefully reduces an otherwise considerable risk of nerve damage to lesser odds I just have to hope I will be lucky with. Hopefully I can march through three cycles to complete this treatment regime (three Fridays, then one Friday off) through March without my platelets falling to a level which puts further chemo on pause. (I’m realistic that this will in fact get “paused” along the way, so don’t spend any time putting this down in your calendar.) I’ll go back to Dana-Farber when I’m in Boston again for Akemi’s May recital and they can continue the platelet investigation and assess my status after completing this regime.
So here we go again. From the fall chemo, I know now that the glucocorticosteroid they give me with the chemo increases blood sugar levels. With my father’s serious diabetes, I have had my eye on this issue on the horizon for many years and I was unhappy to see my glucose counts high. Although they fell back to normal once I got some distance from the drugs, this time I’m putting myself on a high-protein, low carbohydrate/complex carbohydrate, low sugar diabetic diet. No pistachio ice cream for a while. And besides, the metal mouth and intestinal “protests” immediately returned, so I won’t feel much like eating, anyway.
Far from delightfully sorted, there are still more questions than answers. And unfortunately that’s just the best I think it gets right now.
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