Decisions about Treatment

Last Thursday, I began two weeks of radiation treatment to my skull base to address some symptoms I’ve been having from the bone metastases in my skull.   Although I’ve switched my primary oncology care to Mass General in Boston, for this five-day-a week regimen I am able to go back to Dartmouth Hitchcock in Lebanon, NH, which is much closer.   Despite the reason for the trip, the drive through the mountains of Vermont in springtime is just glorious.

IMG_1080In today’s modern medical world, a patient often has considerable choice about the type—as well as the duration—of treatments, especially for cancer. Some of these decisions, unfortunately, are not unlike the comment Senator Lindsay Graham made on The Daily Show a few weeks ago about choosing between Donald Trump and Ted Cruz for the Republican nominee for president: “it’s like being shot or being poisoned.”


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Skull-based radiation at Dartmouth–the mask is specially molded to keep the patient absolutely still


I’ve had to make a few of these decisions in my five years of dealing with this disease, including the most recent one that has led to this radiation therapy. When I started having facial pain and double vision about three weeks ago, my oncologist ordered a head MRI and referred me to a radiation oncologist.  The direct symptoms are related to cranial nerves that are being impinged on by metastases in my skull base, but—unfortunately– the MRI also incidentally found some tiny seeds of cancer in the brain itself.   Because of this, I was given the choice of whole brain radiation to deal with everything at once, or a more limited radiation of my skull base to manage the current and potential future nerve-based symptoms.

Whole brain radiation (which I quickly termed “the nuclear option”) carries with it the risk of potential side effects of permanent hair loss, fatigue which can be severe and last up to a year, and –most concerning to me at my age—cognitive aging of up to 10 years. Of course, I might have done just fine and not experienced any of this—or had only mild effects.   But it wasn’t a chance I wanted to take. My choice was to go with the more limited radiation of my skull and to take a “wait and see” approach to the tiny brain metastases, which in any event may be addressed by the medication I’ll resume when the radiation ends.

Such decisions, I have found, are both very challenging, and intensely personal. No one can make them for you, and you can never be certain you have made the “right” choice, so you have to learn to live with ambiguity. Some people instinctively want to throw everything medical science has available, no matter what the potential side effects—the chance at a more extended life, at blowing the cancer to smithereens, at living to see the milestones of children or grandchildren, being well worth the risk and the sacrifice for them. Others prefer a more certain quality of life, albeit a shortened one. In part, this can be a function of age—younger people with children at home, for example, are in a very different situation from those who are older like myself.  But even among people my age, there is variation. I have come to realize that especially at this point in my life, I am a person who errs more on the side of quality, versus the quantity, of life.

An experience early in my treatment for metastatic disease was instructive. I was waiting outside the infusion room at Dartmouth Hitchcock when a middle-aged man was wheeled from the doctor’s area to the waiting room. He was emaciated, tied to tubes and oxygen. Presently, I saw him wheeled into the infusion area for chemotherapy. I remember looking at him and thinking sadly that this man probably did not have even two weeks to live. And I said a silent prayer that I would not find myself in this situation.

For the most difficult decision by far is when to determine that enough is enough—that more treatment has limited efficacy, and taken with the strain it causes on an already taxed body, may actually do more harm than good and hasten, rather than postpone, death.  Sometimes the decision is made for you—impending liver failure, for example, can preclude any further treatment.

In the absence of hard medical constraints, however, many doctors are reluctant to tell patients, “there is nothing more we can do”—because, if the body and mind are willing, there is probably always at least one more option they can try. Sometimes, either the patient or caregivers will push for ever more aggressive treatment even when the chance of efficacy may be small.  Others, like the eloquent Sherri Fillipo, who stopped treatment last summer and lived another nine months until her death in April, choose to end treatment when the side effects become too onerous, and to go into hospice instead.

As the director Elia Kazan wrote, “What’s called a difficult decision is difficult because either way you go there are penalties.” While I hope it is a while off, I know the day may well come when I may have to make a choice between more treatment and stopping treatment.   And I pray for the wisdom and grace to make the decision that—penalties unavoidable—brings, if not a good outcome either way, the most peace of mind.

 

 

 

 

18 thoughts on “Decisions about Treatment

  1. I’m still with you, kid

    love

    On Wed, May 4, 2016 at 8:00 PM, The Age of Wander wrote:

    > nreisig posted: “Last Thursday, I began two weeks of radiation treatment > to my skull base to address some symptoms I’ve been having from the bone > metastases in my skull. Although I’ve switched my primary oncology care > to Mass General in Boston, for this five-day-a week ” >

    Liked by 1 person

  2. Both Daddy and Barb decided to quit chemo against their doctors wishes and I am guilty of leaning on Barb to change her mind but the quality of life she had her last year are full of precious memories of her and her attitude. I only hope if the day comes when I have to make a decision like that I will get support instead or arguments I wish tat for you as you make your choices.

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  3. Amazing. The clarity of your words strikes a deep chord with the ideas I am working with about the practice of everyday life. The students who I am working with, teaching, and mentoring benefit from your posts. Today’s especially – the difficult choices –

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  4. I like to think that I would choose quality over quantity too. I pray that you have both for quite some time. As others have said since you started blogging again, thank you for sharing your brave insights on this journey.

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  5. Nobody writes like you , Nancy. It’s like you sitting here next to me and telling me in person.
    Thank you for sharing it with us. Big HUG. Sue

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  6. The wonder of our lives are always a wonder to eternally go on in time. I live the phrase ” One Day At A Time”, even though you make future plans. Each day is a gift that we cherish watching things change an that can’t stop our aging but seeing new beauty in our children an there children that we leave behind and store in our memories for eternity and the Belief that we will meet again on a high more peaceful and happy road with God. He is my light that will never go out. I am thankful and grateful. Continue your journey as we all do and keep going endlessly my friend.

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  7. I found it very difficult to make decisions with only limited amounts of “facts.” Many of my decisions were gut wrenching and I can’t imagine how difficult this last one was for you. I think it is amazing how much courage we can find to call on. Will do a meditation today with you in mind.

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