An uncomfortable feeling is not an enemy.
It’s a gift that says, "Get honest; inquire.”...
The world is nothing but my perception of it.
I see only through myself.
I hear only through the filter of my story.
Byron Katie.
I posted this blog originally on Seeing For Myself because that is my original blog and this entry was originally slanted to a spiritual perspective.
Then, I got the idea for As Good As It Gets – and the lessons fit here too.
It’s basically the same, though I have added an additional link. More info on survival curves, as I’ve been perplexed and scared by a few I’ve seen in the past few weeks.
When I revived after surgery, I asked my first question of my doctor and chemotherapist: "What is the best technical literature about mesothelioma?"
She replied, with a touch of diplomacy… that the medical literature contained nothing really worth reading…
The literature couldn't have been more brutally clear: mesothelioma is incurable, with a median mortality of only eight months after discovery.
I sat stunned for about fifteen minutes, then smiled and said to myself: so that's why they didn't give me anything to read.
Then my mind started to work…
Stephen Jay Gould, The Median Isn’t the Message
My niece, Eve, has had a recurrence of her cancer.
Since we got the news about three weeks ago, all my spiritual learning seems to arise from that reality.
I have been questioning many of my beliefs with new urgency.
I have been reading the latest literature on Hodgkin’s lymphoma, stem cell transplants, curcumin, inflammation, macrophages, CD68...
I have been pushed to look deeper until there seems no difference between the spiritual and the totally pragmatic, nitty-gritty of “you bet your life.”
So much is shifting, I have been struggling to process all of it into a useful form.
I can only imagine how it’s been for Evie.
It doesn’t feel like I have been all that successful in my efforts to organize my thoughts and now, the easiest way of sharing seems to simply tell a story.
Ah stories, I love them. What else is there?
Byron Katie
So, here is one regarding N = 1:
My internist and I spent at least two years trying different medications for lowering my blood pressure. Then, I happened to get laid up in bed unable to eat. That got me off drinking coffee without even trying.
After that, I noticed that my blood pressure finally normalized.
I took a month’s worth of the numbers to my doctor.
Yes. Caffeine seemed to be the culprit.
We were happy for a moment, and then he said, (I guess because he knows I do research)
“N equals one.” … in short, hw thought my experience didn’t prove a thing.
It took a few hours before the stupidity of his comment really began to sink in.
Well, Hell!
N did equal 1, but when that One refers to me, that’s all I need to know!
Suddenly, I realized that my doctor and I had different interests.
He wants to know what will work in general for the whole panoply of patients that cross his threshold.
I want to know what will work for me.
And now I see, the same holds true for cancer patients.
What does "median mortality of eight months" signify in our vernacular?
I suspect that most people…would read such a statement as "I will probably be dead in eight months" - the very conclusion that must be avoided, since it isn't so, and since attitude matters so much.
Stephen Jay Gould
In his essay Dr. Gould explains his rationale as a scientist of rigorously interpreting statistics.
I wish all cancer patients could know his story.
He didn’t swallow the statistics naively.
He interpreted them with an eye to N = 1 and in a scientific manner.
He lived for twenty years after his diagnosis with a strong clear attitude.
He lived to tell his story.
Which kind of brings me back to Byron Katie.
She likes to begin spiritual inquiry with two questions regarding the thoughts we think:
Is it true?
Can you absolutely know that it’s true?
Ask yourself these questions and you’ll soon discover that usually the answer is either “No” or “I don’t know.”
For instance with Hodgkin’s statistics, by the time my head allows for four different types of Hodgkin’s, four stages of disease, two sexes, a bimodal distribution in age, bulky or non-bulky, treated with these drug or those drugs, that number of cycles, radiation or no radiation, I have no idea how many in the study are actually closely matched to Eve.
So, what do these statistics really say about me, the N = 1, that really matters? I have to conclude the answer is:
I don’t know.
The doctors don’t know.
NO one really knows.
The door to God is the insecurity of Not Knowing anything,
Bear the grace of that insecurity, and all wisdom will be yours…
Adyashanti, Emptiness Dancing
Not knowing isn’t an easy place to be. In fact, it can be quite uncomfortable.
But it is an honest place.
And it is as good a place as any to rest and to take the next step forward.
How do you get back to heaven?
To begin with, just notice the thoughts that take you away from it.
You don't have to believe everything your thoughts tell you.
Just become familiar with the particular thoughts you use
to deprive yourself of happiness.
It may seem strange at first to get to know yourself in this way,
but becoming familiar with your stressful thoughts
will show you the way home to everything you need
Byron Katie
I hope you read Gould’s essay.
The site that posts the essay has other lessons about reading survival curves that are helpful too.
Sunday, July 18, 2010
As Good As it Gets
Hodgkin's lymphoma is one of a handful of cancers that, even in its later stages, has a very high survival rate (~90% or better) …
Most patients who are able to be successfully treated and thus enter remission generally go on to live long lives.
Wikipedia citing the New England Journal of Medicine
When my niece, Eve, called to tell me she had cancer, she began with the good news:
If you have to have cancer, Hodgkin’s is the best because it has a 95% cure rate.
The diagnosis (mixed cellularity, stage II, bulky) arrived a month before Eve & Michael’s wedding.
Rather than a honeymoon, Eve started ABVD chemotherapy.
She knew it would be tough, but with such good numbers she decided to take the chemo, get it done, and get back to life as a newly wed.
She also added several adjunct therapies: intravenous vitamin C, a strict organic diet and detoxification protocols.
But, a little reading should have given us a heads up:
…the failure-free survival (FFS) and overall survival (OS) rates at 5 years were only… 75% - 85% [ABVD treated]…
A long-term follow-up of this study over 15 years has recently been published, demonstrating a 45% - 50% progression-free survival rate and a 65% OS rate.
Journal of Oncology, 2002
Eve relapsed from her ABVD treatment within two months.
Her doctors then explained that about 30% of patients have recurrence.
They suggested more chemo, an ICE regime, followed by stem cell transplant.
(And, oh yes, the transplant protocol has an 80% chance of destroying your fertility. You might want to check into that.)
“Then, she will be cured,” her mother said to me.
Meanwhile, I had found some different words:
We assessed late mortality in 854 individuals who had survived 2 or more years after autologous hematopoietic cell transplantation (HCT) for hematologic malignancies…
Overall survival was 68.8% …at 10 years, and the cohort was at a 13-fold increased risk for late death…when compared with the general population.
Blood, 2005
Are you depressed yet? Don’t be.
That isn’t my intention. I am just providing background.
I thought we really did our homework before Eve began her ABVD.
I thought we’d covered all the bases.
Eve’s relapse was a stunner from which we had to regroup and think things through again.
During that hard process, I discovered that there seems to be a serendipity and synchronicity in this process that we’re going through.
I’ve come to realize that, “This is as good as it gets.”
And I don’t mean that as a version of “the cup is half full.”
Rather, I have come to realize Eve is uniquely and blessedly positioned for this challenge.
She has a PhD in pharmacology from the University of Georgia with an emphasis in the nutriceuticals involved in inflammation. In her day job she is a consultant to physicians practicing functional medicine.
Her father, a PhD in Medical Science, is a leader in the development of cutting edge tests for functional medicine. He’s on the editorial boards of of the journals Alternative Medicine Review and Integrative Medicine.
Her mother is a lioness of a woman ready to rip through any barrier standing between her child and life.
Her husband is rock steady with gentle love and total support.
Her grandmother is a Reiki master.
And, I can help out too.
I can do the leg-work through the literature, review the latest research.
I have a PhD in molecular genetics, a researcher in microbiology, and have practiced mediation for over forty years (which explains my other blog).
Eve has also asked to me help her go deeper spiritually, to help her get her mind in the best state to support healing.
And so, we are proceeding as a family.
We are not experts in cancer or lymphoma.
But, we are learning.
And who better prepared to take the challenge on: a core of PhDs with access to the latest science and all the motivation in the world.
We’re in a unique position to bring together healing knowledge in a new way.
The purpose of this blog is to share the information we discover.
I am not suggesting that you do as we do.
But, perhaps you’d like to know.
Some of what we learn is pretty sobering.
Some discoveries make us cheer and pump the air.
Through it all, we are finding a new appreciation of the love that binds us all together.
And that truly is, As Good As It Gets.
Most patients who are able to be successfully treated and thus enter remission generally go on to live long lives.
Wikipedia citing the New England Journal of Medicine
When my niece, Eve, called to tell me she had cancer, she began with the good news:
If you have to have cancer, Hodgkin’s is the best because it has a 95% cure rate.
The diagnosis (mixed cellularity, stage II, bulky) arrived a month before Eve & Michael’s wedding.
Rather than a honeymoon, Eve started ABVD chemotherapy.
She knew it would be tough, but with such good numbers she decided to take the chemo, get it done, and get back to life as a newly wed.
She also added several adjunct therapies: intravenous vitamin C, a strict organic diet and detoxification protocols.
But, a little reading should have given us a heads up:
…the failure-free survival (FFS) and overall survival (OS) rates at 5 years were only… 75% - 85% [ABVD treated]…
A long-term follow-up of this study over 15 years has recently been published, demonstrating a 45% - 50% progression-free survival rate and a 65% OS rate.
Journal of Oncology, 2002
Eve relapsed from her ABVD treatment within two months.
Her doctors then explained that about 30% of patients have recurrence.
They suggested more chemo, an ICE regime, followed by stem cell transplant.
(And, oh yes, the transplant protocol has an 80% chance of destroying your fertility. You might want to check into that.)
“Then, she will be cured,” her mother said to me.
Meanwhile, I had found some different words:
We assessed late mortality in 854 individuals who had survived 2 or more years after autologous hematopoietic cell transplantation (HCT) for hematologic malignancies…
Overall survival was 68.8% …at 10 years, and the cohort was at a 13-fold increased risk for late death…when compared with the general population.
Blood, 2005
Are you depressed yet? Don’t be.
That isn’t my intention. I am just providing background.
I thought we really did our homework before Eve began her ABVD.
I thought we’d covered all the bases.
Eve’s relapse was a stunner from which we had to regroup and think things through again.
During that hard process, I discovered that there seems to be a serendipity and synchronicity in this process that we’re going through.
I’ve come to realize that, “This is as good as it gets.”
And I don’t mean that as a version of “the cup is half full.”
Rather, I have come to realize Eve is uniquely and blessedly positioned for this challenge.
She has a PhD in pharmacology from the University of Georgia with an emphasis in the nutriceuticals involved in inflammation. In her day job she is a consultant to physicians practicing functional medicine.
Her father, a PhD in Medical Science, is a leader in the development of cutting edge tests for functional medicine. He’s on the editorial boards of of the journals Alternative Medicine Review and Integrative Medicine.
Her mother is a lioness of a woman ready to rip through any barrier standing between her child and life.
Her husband is rock steady with gentle love and total support.
Her grandmother is a Reiki master.
And, I can help out too.
I can do the leg-work through the literature, review the latest research.
I have a PhD in molecular genetics, a researcher in microbiology, and have practiced mediation for over forty years (which explains my other blog).
Eve has also asked to me help her go deeper spiritually, to help her get her mind in the best state to support healing.
And so, we are proceeding as a family.
We are not experts in cancer or lymphoma.
But, we are learning.
And who better prepared to take the challenge on: a core of PhDs with access to the latest science and all the motivation in the world.
We’re in a unique position to bring together healing knowledge in a new way.
The purpose of this blog is to share the information we discover.
I am not suggesting that you do as we do.
But, perhaps you’d like to know.
Some of what we learn is pretty sobering.
Some discoveries make us cheer and pump the air.
Through it all, we are finding a new appreciation of the love that binds us all together.
And that truly is, As Good As It Gets.
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