I am very sorry to report today that shadowplayer has died.
I have no more to tell you than that. This morning I happened to look back at some of my previous diaries and noticed a couple of new comments here and there. Unfortunately, one of the new comments in my diary of 6/18/12 was this one:
Fare Thee Well...
This is Shadowplayer's wife. He had asked me to post in here. He passed away today, with his family at hand and Grateful Dead music playing. He really appreciated this group, although he was not a frequent poster. Thank you for your friendship and support through this last year and a half. May the four winds blow him safely home.
by shadowplayer on Sat Jun 23, 2012 at 10:49:17 PM EDT
Shadowplayer had a tough row to hoe, having Stage IV lung cancer. But he was in a course of treatment that he hoped would be successful. I am deeply sorry that he was not able to gain any more time in the end.
I have sent a Kosmail to shadowplayer hoping that his wife will read it, but there is no telling how much she knows the system, or whether she will return to look at Daily Kos in any case.
Thus, to start today’s diary, I’d like to ask you to send your virtual condolences to shadowplayer’s wife, family, and friends in the off chance that she will be reading this and can gain comfort from our sympathy now. Peace and blessings to him and to his wife and family.
Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.
Since my diary last week on political activism post-diagnosis, I have continued to mull over the need for proactive patient-based advocacy related to cancer treatment. One of the prompts came from Crashing Vor’s recent diary excoriating a Republican candidate for the House from NY state for saying that breast and prostate cancers don’t kill people any more. A comment in that thread by treesrock led me to an interesting new book by Dr. Otis Brawley, M.D., recently the chief of oncology at Grady Hospital in Atlanta and currently the chief medical officer for the American Cancer Society.
Dr. Brawley’s account, How We Do Harm, is excerpted here in conjunction with a brief interview, and the excerpt is certainly worth reading. His first patient account—the case history of a middle-aged black woman in Atlanta who presented at the Grady ER with her right breast in a bag, after the cancer had grown so much it basically fell off—is a deeply troubling indictment of the “health care system” as it fits within a context of inadequate sick leave/disability benefits in this country, or basically the absence of a real, effective, safety net for all. Practicing at the largest public hospital in the U.S., he would have had plenty of patients with which to illustrate that point, but in other chapters he also chose to discuss more affluent patients who were, in effect, overtreated in ways which ruined the quality of life they had remaining.
The book is worth a read, though I cannot say that it breaks any unfamiliar ground. On the other hand, he is a doctor whose appointments at a number of important medical institutions (University of Chicago for med school, then a fellowship at the National Cancer Institute and a long-standing faculty appointment at Emory University) have given him a first-hand perspective on the macro as well as the micro politics of cancer treatment in the U.S., so he is certainly attempting to be a whistle-blower. It’s also significant that he is African-American, growing up in Detroit with his own reasons to be skeptical of the white medical establishment. Today he feels as though he still practices in the shadow of the profoundly unethical Tuskegee Institute experiments of the 1930s that denied life-saving treatment to dozens of African-American men with syphilis. His medical remedy is that somehow we should insist on good, evidence-based treatments, whether for cancer or any other condition, and that all patients should get the same good quality care, with an emphasis on healthy living and disease prevention. (Dr. Brawley’s named co-author for this book is Paul Goldberg, who not coincidentally is the current editor of a weekly publication called The Cancer Letter, which I will discuss briefly below.)
As moving and as enraging as Brawley’s stories are, I must say that the book as a whole left me wanting more specific and detailed suggestions about how a citizen/patient intervention might be effective. There is simply so much to do.
Recent coverage of the ACA on this site alone has demonstrated how far short we will still be in 2014 from universal health coverage—even if somehow we are able to defeat the Republican goal of maintaining punitively low eligibility conditions for Medicare. Here's a list of a few of the most recent and/or comprehensive:
What the Court Has Wrought: The Coming Medicaid Wars
Medicaid for All Poor People? Don't Count on It
Supreme Court Opens Door for States to Drop Current Medicaid Enrollees
Yes, it's important to keep expanding eligibility for coverage, but that's only so much help unless there is also more support for living expenses. When you are poor and sick, living from paycheck to paycheck, perhaps with no sick time at all, or perhaps the sole wage earner for your family, having health insurance coverage will still be another cruel joke if you are unable to take the time off that you need merely to get treatment, let alone to rest and to heal. In these times, Alan Grayson's sardonic overview of a Republican health plan for everyone but the wealthy--"if you get sick, then die quickly"--still has far too much immediate relevance.
These are big issues, obviously related to the objectives we have of changing the political landscape in this country so that there is a genuine devotion to the “common good.” For now, however, I want to bring us back to the topic of cancer-related advocacy organizations.
Back in the day of the Susan G. Komen Foundation scandal, it became clear that so-called advocacy groups are not created equal. Betty Pinson put up Breast Cancer Philanthropy 101, part 1, a resource diary related to breast cancer organizations of various sorts, which is worth consulting for several reasons (whether you have BC or not).
Breast cancer is definitely one of the cancers which receives a great deal of funding for screening, prevention and treatment. In fact, early on in my own treatment I remember hearing from someone with breast cancer that if they had to get cancer, they were relieved that it was a kind of cancer that had parades.
I wish that my type of cancer had as much activism going on for it, frankly. There are several groups that deal with ovarian cancer, but relatively few that focus specifically on uterine cancer or else more generally on gynecological cancer.
One of the standard resources for gyno cancer research and information, The Foundation for Women's Cancer, is now in the process of merging with another organization, The Women's Cancer Network. I honestly cannot tell whether they sponsor any advocacy that's worth the name. They're having a race in Washington DC the first weekend of November, and an educational workshop the day before specifically related to uterine cancer. However, that's the weekend before the election, and I may be otherwise occupied then!
But there are hundreds of other cancers, and at least as many advocacy groups, with an astonishing variety of missions and objectives. Some focus on patient support and education; some on promoting research.
The American Cancer Society is probably the best known, for several good reasons. But here's another:
National Coalition for Cancer Survivorship
And a list of many different advocacy organizations can be found
here
Tonight I’m asking you to share your experiences with specific organizations, along with your wish list for cancer advocacy. What have you looked for? Which ones work “best” and why? What standards do we expect them to meet? What is still missing that you would like to see?