Daniel Henninger’s recent and informative editorial on the recess appointment of Dr. Donald Berwick to head the Centers for Medicare and Medicaid Services (Wall Street Journal, 15 July 2010, p.A15), was a sobering read, especially for my family where my wife, Lorie, is just getting underway with her thirteenth round of fighting cancer.
It prompted me to write to Mr. Henninger (something I just don’t do), and to post my response in this blog.
Here are links to the text and video versions of Mr. Henninger’s original comments:
And here is the letter I wrote:
Dear Mr. Henninger-
Your column in today’s WSJ regarding Dr. Berwick prompts me to write. Thank you for bringing this matter to national attention.
My wife, Lorie, has begun treatment for her 12th re-occurrence of cancer over an 11 year period. She has among the rarest of cancers (uterine leiomyosarcoma) and is an example of being the statistical outlier in every way. She is also an example of the individualized approach to treating cancer where the medical field is now seeing the best and most hopeful advances in treatment. This flies in the face of the excerpted comments of Dr. Berwick that you provide which point to centralized standards, and centralized planning put into effect by people no longer doing research or practicing medicine.
Outliers such as my wife are needed in order to propose new research, develop new protocols and cheaper treatments—the very development of the standards which Dr. Berwick wants to put into place. The problem, though, is that when planning is centralized standards quickly become outdated, and medical justice is ultimately denied to the very people Dr. Berwick would like to help.
9 years ago, my wife was told nothing more could be done and that she should be prepared to enter hospice. Her lungs were filling with tumors after already having half of one lung removed. We moved from Indiana to Wisconsin to be nearer family and for me to raise my children as a single father.
We began working with a new oncologist upon arrival who persuaded us to try something outside normal protocols, and from which something might be learned for future patients. Lorie nearly died during treatment, and has undergone a number of procedures since, but survived to see her son married this year, as well as her daughter graduate from college.
In this newest round of cancer, she will be among the first to go through a cyberknife treatment on four separate occasions. She has lived long enough by trying non-standardized treatment under the best doctors that we are daring to utter the words “chronic condition.” And because this outlying and heroic woman has worked in partnership with her doctors, new patients with similar conditions can begin treatment far less intrusively, far less expensively and with greater hope for long life.
-mark l vincent
p.s. Lorie’s story became a Milwaukee Journal Sentinel article a few years ago, when she had her 7th cancer occurrence. If interested, you can find it at: http://www.redorbit.com/news/health/373416/lorie_vincent_was_told_cancer_would_kill_her_in_months/
I am writing this while Lorie and I wait to hear just how much her cancer has grown and whether it means entering into treatment immediately or a few weeks from now. We are embarking on what will be a thirteenth round in this interminable, yet holy battle. Working is what pays our medical bills, but so often work takes me out of town, making it particularly hard to wait. A scrap of paper in an old file caught my eye today. I don’t know when or where I wrote this prayer, but it was medicine for my spirit . . . .
The thanks I give
This joy I render
Comes from a heart blistered and tender
From the friction of sliding through shadows I could avoid.
Yet, You peer into this darkness
And call my name.
Your voice shines light in my shroud and brings me to life
How grand it is to breathe in Your presence!
How glorious to possess a beating, blistered heart!
How glorious to know you hold it in Your healing hands!
-mark l vincent
I’m writing this a few days before my wife’s next scans. The cancer journey is no harder and no more tragic than anyone else’s. We can even identify ways our journey has been easier than others. What has been unique is the frequency (11x) and duration (9.5 years). The respites between occurences have been mercilessly short and substantially life-altering.
We found peace along the way by navigating between people who tell us to exercise more prayer and faith so that the cancer goes away, and people who are sure we are selfish materialists because we keep pursuing treatment at very great expense, perhaps depriving others of medical justice.
Rightly or wrongly, we have continued on because we enjoy life together, but even more because we believe that others will live longer and less expensively because we have embraced our ordeal as part of our participation in God’s redemption of the world. Rightly or wrongly, we fight disease but not death–already content that God has not and is not ignoring us.
I write these words again–ahead of the medical tests, to remind me of my commitment to God as his child, and my commitment to my wife Lorie, as her champion.
-mark l vincent