Not much to say about today. There was a fair amount of work to do and I did a fair amount of work. I think I am just about ready to be re-abled (undisabled?) which is pretty exciting. I think I mentioned a long time ago that I examined a patient after an assault and the state is prosecuting the person who assaulted the patient so I may be testifying. I spoke with the lawyer today. She wants to meet me to talk about what I might say if I testify and probably to make sure that I am semi-articulate and seem sincere. I, shameless promoter of good end of life care, suggested we meet at the Hospice House. She'd never been to the Hospice House and I figure at some point she may have need of hospice services and having seen the CHH and how nice it is can only help her and her loved ones when they need to think about their end of life issues.
Debbie came to visit today. She had never been to the Hospice House. I love giving tours because it is such a beautiful and peaceful place and I truly feel that if there are magnetic fault lines in the earth, where psychic energy of some sort builds up in a beneficial way, that the Hospice House is built on one. Anyway, it was nice to see Debbie and she seemed to be suitably favorably impressed by the house.
In other news, not much else going on. I haven't scheduled my port removal yet. Partly because I was actually kind of busy today and partly because--I'm sure of this--ports protect against recurrence of cancer. I'll get right on that research: randomized (can't be blinded) trial of port removal or retainment as a means of secondary prevention in cancer.
In lieu of a real post today because my life has become so normal and dull that I am reduced to talking about pasta recipes and paint drying, I thought I would post my PCORI essay. It is *exactly* 500 words which is their limit. How 'bout that, huh? /*start */
When I was diagnosed with leukemia two years after passing my board exams in hospice and palliative medicine, the irony did not escape me. Neither did the fear, fatigue, nausea or inconvenience. Despite my years of experience as a physician, I was just a regular patient. Prior to my diagnosis, I had some idea of what it is like to be ill from talking with my patients, reading the literature and reflecting on what I saw in my patients every day. After my initial 29-day long hospitalization, I realized that I had had some parts right, but I now understand why a febrile patient might refuse a chest xray. If you are already cold because of a fever, every part of the journey in a wheelchair with a bald head to a room at the ideal temperature for the machines where you have to take off everything but your johnny and stand with your arms up against some cold metal feels like a hardship. I better understand why patients might be “non-compliant.”
The perspectives and experience I have had as community PCP, hospitalist, palliative care physician and patient fuel my interest in applying to participate in PCORI. I know what physicians think it is like to be a patient, and I know some of the gaps in this knowledge, both intellectually and experientially. I think that having both the physician and patient experience enhances my understanding of both of the experiences.
To give a specific example, when one is undergoing chemotherapy for leukemia, one of the side effects is destruction of the immune system. It makes sense to be sure that the food one eats has no chance of carrying bacteria or fungus. The rationale is that bacteria or fungus particles which would normally be innocuous could, without an immune system to keep them in check, cause serious infections. Operating on this very common sense idea, people are placed on a restrictive diet when they are getting chemo. The “neutropenic diet” avoids buffet table food, unpeeled fruit, aged cheese, wine and many other things. My inner physician agrees that skipping these is a small price to pay to avoid an infection. The patient in me says that when I feel lonely and scared, I want a grilled brie sandwich with a glass of wine and I couldn't have this for most of six months.
The evidence base for the eating plan in question is slim because the ability of cancer patients to eat what they want is not a priority for the people who have been making decisions about where we put our research energy. I understand why it has not been a priority. But a patient perspective now informs my thinking.
I think as a physician, in particular a palliative care physician, with a recent personal leukemia experience, I have a unique perspective to bring to PCORI. I would like to contribute to the shape of research in the future and hope I am chosen to help. /* end */
They'll want me, right? I'll find out in mid-March and you will find out one microsecond later.
For me for tomorrow, I am wishing for normalcy again and safe travels. For you, normalcy if that sounds good to you and safe travels as well.
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