I have heard more than one story about oncologists who treated a patient for years and then when the patient died the family never heard from the doctor. Or the doctor didn't call or write or come to the funeral. And you wonder, "How can they do that?" The patient and their family believed this person was a partner, in fact, they may have used that language themselves, "We'll do this", or "We'll work together." But then a death and "we" feels like, "next."
And you wonder, does anyone talk about this in the back room at the oncology center?
This article from May 27th New York Times may help to explain some of it--and also the high cost of doctor's denial and grief. It's a shame really. If death is framed as failure for an oncologist, how much of that shame gets projected onto the patient and their family.
And here too you'll read about how a doctor's grief over a past patient may be affecting your treatment. Oh, we so think that cancer treatment and oncology is a science but really it's more of an art and a blend of psychology and chemistry and grief. Read on. The link is below:
http://www.nytimes.com/2012/05/27/opinion/sunday/when-doctors-grieve.html
Wednesday, May 30, 2012
Friday, May 25, 2012
Enjoy Every Sandwich
Lee Lipsenthal was a doctor, researcher, and President of the American Board of Integrative Holistic Medicine, and the medical director for Dean Ornish's Preventive Medicine Institute. So if there was someone who knew the causes and cures and alternative perspectives on cancer it was Lee.
Lipsenthal died young. He died of esophageal cancer. He wrote this book after his diagnosis, during his treatments and into his dying. He was not able to cure his own cancer but he was able to cure his fear of death. He was able to die fully alive. It's a terrifically thoughtful book, especially coming from someone whose profession kept him close to the best of Eastern and Western medicine.
You can click on the link below, or go to your local bookstore, pick up a copy and read the first three pages of chapter one. You'll be his after that.
http://www.randomhouse.com/book/215689/enjoy-every-sandwich-by-lee-lipsenthal
Lipsenthal died young. He died of esophageal cancer. He wrote this book after his diagnosis, during his treatments and into his dying. He was not able to cure his own cancer but he was able to cure his fear of death. He was able to die fully alive. It's a terrifically thoughtful book, especially coming from someone whose profession kept him close to the best of Eastern and Western medicine.
You can click on the link below, or go to your local bookstore, pick up a copy and read the first three pages of chapter one. You'll be his after that.
http://www.randomhouse.com/book/215689/enjoy-every-sandwich-by-lee-lipsenthal
Wednesday, May 23, 2012
Spiritual But Not Religious
I taught a class yesterday at The Beverwyck Community in Albany. The topic was SBNR--"Spiritual But Not Religious". The group was terrific --we talked about the values of spiritual well-being, and how--if your spiritual life is outside of traditional religion-- you practice your spiritual life and make community.
Here are a few of the notes I jotted down about spirituality and religion:
Spirituality is about my essence, my core, my insides, my ability to perceive and experience myself in the context of something that transcends my daily experience. Spirituality is the lived expression of my beliefs. Spirituality is the way we respond to the spirit of a Higher Power.
Religion is a set of beliefs, practices
and often a language for a certain way of searching or a specific kind of
deity. Religion defines or describes certain specific ways of behaving
or acting to find that deity. At its best Religions
have spirituality or bring us to spirituality, but not always.
Here are a few of the notes I jotted down about spirituality and religion:
Spirituality is about my essence, my core, my insides, my ability to perceive and experience myself in the context of something that transcends my daily experience. Spirituality is the lived expression of my beliefs. Spirituality is the way we respond to the spirit of a Higher Power.
It's the way that I live out what I believe.
Religion is about loyalty to institutions, clergy or rules. Spirituality is about loyalty to justice and loyalty to compassion. Religion is about “Who’s in and Who’s out”—us against them, who’s right and who’s wrong, while spirituality rejects dualistic ways of thinking.
Religion and spirituality need not be at odds—religion at its best is spirituality in community.
Monday, May 21, 2012
The Glorious Debris
“Every one of us
is called upon, probably many
times, to start a new life.
A frightening diagnosis, a
marriage, a move, loss of a job…
And onward full tilt we go,
pitched and wrecked and absurdly
resolute, driven in spite of
everything to make good on a
new shore. To be hopeful, to
embrace one possibility after
another—that surely is the basic
instinct…..Crying out: High tide!
Time to move out into the
glorious debris. Time to take
this life for what it is.”
--Barbara Kingsolver, from High Tide in Tucson
Thursday, May 17, 2012
A Judge's Plea for Pot
In today's New York Times is a provocative and empathic OPED piece by Gustin L. Reichbach, justice of the State Supreme Court. In this piece he describes his experience with pancreatic cancer and his use of and need for marijuana to help him stand the pain and nausea.
This is an important issue in healthcare. Reichbach writes, "This is not a law and order issue; it is a medical and human rights issue."
Take a look at this article and please forward this into the healthcare community.
Here's the link:
http://www.nytimes.com/2012/05/17/opinion/a-judges-plea-for-medical-marijuana.html
This is an important issue in healthcare. Reichbach writes, "This is not a law and order issue; it is a medical and human rights issue."
Take a look at this article and please forward this into the healthcare community.
Here's the link:
http://www.nytimes.com/2012/05/17/opinion/a-judges-plea-for-medical-marijuana.html
Saturday, May 12, 2012
Memoir of a Debulked Woman
A new book by feminist scholar Susan Gubar describes the experience of treatment for ovarian cancer. The New York Times review of her book says that ovarian cancer has been called "Breast cancer's poor neglected cousin." More shockingly is also says that, "Ovarian cancer lacks breast cancer's public recognition for a terrible reason: so few women live to write about it".
The title of Gubar's book is provocative. We learn that the standard treatment for advanced ovarian cancer is called "debulking"--surgery in which as much tissue and as many organs as possible are removed in hopes of removing as much cancer as possible.
As awful as that description may be, and the reality of the surgery must be, this is a moving and powerful book written by an amazing scholar and writer. She leaves little out, as the surgeons left little in, and she gives us a moving picture of the inner life and decision making process of a woman living with, and dying of, cancer.
Here's the link:
http://www.nytimes.com/2012/05/06/books/review/memoir-of-a-debulked-woman-by-susan-gubar.html?smid=pl-share
The title of Gubar's book is provocative. We learn that the standard treatment for advanced ovarian cancer is called "debulking"--surgery in which as much tissue and as many organs as possible are removed in hopes of removing as much cancer as possible.
As awful as that description may be, and the reality of the surgery must be, this is a moving and powerful book written by an amazing scholar and writer. She leaves little out, as the surgeons left little in, and she gives us a moving picture of the inner life and decision making process of a woman living with, and dying of, cancer.
Here's the link:
http://www.nytimes.com/2012/05/06/books/review/memoir-of-a-debulked-woman-by-susan-gubar.html?smid=pl-share
Tuesday, May 8, 2012
Colleen's Story
Sunday, May 6, 2012
MMOB
Mind My Own Business. I am writing this acronym: MMOB
everywhere this week. On my planner, my to-do list and even on a Post-it in my
car.
As a caregiver it can be hard to sort out sometimes, but I’m
working at it. Years ago a great play about the right to die was called, “Whose
Life is It Anyway?” I’m reminded that even though I may care about his life and
his health—they are both his, not mine.
But, again, it’s tricky when you are the caregiver and the
consequences of another person’s choices might eventually tumble into your lap.
But this is where having good boundaries, and maybe a Black Belt in Alanon, can
come in handy. (I do think that every caregiver qualifies for Alanon—the free,
anonymous program for family members).
I have to say MMOB when he doesn’t want to take the B
vitamins that will help his neuropathy. And I say MMOB when he scoffs at the
baby aspirin that can prevent colon cancer. And I say MMOB when he says he
might skip the next round of tests that the doctor recommends. And I say it
also when his kids are struggling and if his ex has stuff going on. In each of
these cases the consequences might tumble back on to me later, but if I take
them on now I’ll have no peace of mind at all.
I also have to have a quiet moment and be honest with
myself. It’s too easy as a caregiver to pretend that the reason that I mind
other people’s business is because I am kind and altruistic. I might say that I
only want him to be healthy or them to be happy or her to be at peace, but
really? In reality it’s all pretty selfish—The reason that I want any of that
for them is so that I can be happy and so that I can have peace. I get caught
in that old control fallacy.
In truth the best way for me to be happy and to have peace
is not by getting everyone else’s life straightened out—(even in my head and
even in my driving alone in my car fantasy time. Yes, guilty.) But my peace
will come from detaching and letting go of their lives, and putting the focus
back on myself.
Yes, much easier said than done, but I am slowly learning
that being “selfish” is the most unselfish thing I can do. So I’ll scribble
this little note to me where I can see it every day MMOB and I’ll mind my very
own, all the time growing and changing, business.
Tuesday, May 1, 2012
Hope Club on the Go! in Albany
I heard the most wonderful news. The Hope Club of The American Cancer Society (Formerly Gilda's) is offering their free, emotional, educational and social cancer support services in new locations. This is great. Hope Club is taking the show on the road, so to speak, to several additional locations:
Monday nights at New Horizons Christian Church, 79 Osborne Street in Albany
Monday nights at Delaware Community Library, 331 Delaware, in Albany
Wednesday nights at Lincoln Park (Eagle and Morton) in Albany
Thursday nights at Berkshire Bank Community Room in Rotterdam.
And a Troy location coming soon!
This means Hope Club help and access to lots more people.
Shavina Richardson, MSW is the Outreach Manager for Hope Club. Call her for more info, times, dates, programs. Her number is 518-782-9833 ext 34 or on her Cell at 518-925-8380.
Monday nights at New Horizons Christian Church, 79 Osborne Street in Albany
Monday nights at Delaware Community Library, 331 Delaware, in Albany
Wednesday nights at Lincoln Park (Eagle and Morton) in Albany
Thursday nights at Berkshire Bank Community Room in Rotterdam.
And a Troy location coming soon!
This means Hope Club help and access to lots more people.
Shavina Richardson, MSW is the Outreach Manager for Hope Club. Call her for more info, times, dates, programs. Her number is 518-782-9833 ext 34 or on her Cell at 518-925-8380.
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