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Reflections From A Caregiver: "In this cancer community of survivors, how do we promote the power of positive thinking and not leave behind those who’s treatments are failing to impact the disease?"

Posted on May 18 2010 by Pat Killingsworth | 650 views

I have been e-mailing back and forth with a caregiver named Kate.  She originally contacted me about an article I wrote last week, An Ambiguous Multiple Myeloma Maintenance Therapy Study Is Still Worth A Look.  As I often do, I was commenting on one of the numerous research studies I often read.  Here is the last paragraph from that article:

So what does all of this mean? Who knows? Why did I run it? To illustrate how sometimes medical advances don’t move in straight lines. To show how better overall medical care is extending average life expectancies. Most importantly, to remind all of us that reaching a goal (like a very good partial response or very good response or even a complete response) doesn’t necessarily mean a patient will ultimately live longer. Unfair, but true–sometimes. Median survival data is just an average. I feel I’m better and luckier and more determined than the average patient. How about you?

Kate wrote me, concerned about this last paragraph and the message it sends.  Her point?  Let her make it herself:

… So how do we talk about the impact of positive thinking without placing guilt on the cancer survivor whose treatment is not working?  In group our facilitator will remind us that “the patient didn’t fail, the treatment failed.”

How profound!  I quickly returned her e-mail, admitting she makes a very good point.  This has always been a concern of mine—that patients might feel they have “failed” when they do not respond as well to a particular therapy as someone else. I felt this way during my long (12 day) stem cell harvest two years ago. I remember, sitting in our support group, listening to my fellow patients talk about how their harvests only took one or two days—and how easy it was. On the other hand, I ended up with an infected line, needed double doses and twice the number of growth factor shots just to reach my harvest goal. I left Mayo Clinic weak, anemic and discouraged.

Sorry! I’m not trying to make this “all about me.” But I do want Kate and other patients and caregivers to understand I think I know how you feel. That’s one reason why I’m not a big fan of inspirational stories—because sometimes they can contribute to someone feeling worse, not better. My wife, Pattie, hates this stuff! If I, or anyone else makes a statement like “I’m a better person because I have cancer.”, she immediately recoils, expressing her frustration this way: “Having cancer sucks! It isn’t a good thing—it isn’t a positive thing! It’s hard and unfair and painful and sad.”

Fair enough! Pattie knows about which she speaks—she is a three time cancer survivor. Even though things have worked out OK for her, she doesn’t want to reflect positively about her “triumph” over cancer—she wants to forget about it and get on with her life!

Kate summed up much of what we have been discussing here in a follow-up e-mail:

I still think the question is: In this cancer community of survivors, how do we promote the power of positive thinking and not leave beyond (behind) those who’s treatments are failing to impact the disease? I think just pointing out that “patients do not fail treatments, but treatments may fail to be effective’ can work through some of the pressure and guilt patients may feel when things are not going well.

Ironically, my particular article ending statement, “Most importantly, to remind all of us that reaching a goal (like a very good partial response or very good response or even a complete response) doesn’t necessarily mean a patient will ultimately live longer.  Unfair, but true–sometimes.  Median survival data is just an average.  I feel I’m better and luckier and more determined than the average patient.  How about you?” was meant to make exactly the point Kate is stressing. Things don’t always go the way we would like or expect. But we all want to believe we can “beat” the averages. Fortunately for many myeloma patients in 2010, that may be a reasonable, achievable goal. Why? The current averages are wrong! New therapies are moving these numbers dramatically in our favor—the numbers just haven’t had time to adjust yet.

But my last words were misinterpreted by Kate—and probably some other readers as well. To sum things up, Kate is correct. One person’s inspiration is another person’s frustration! I often worry about that as I post study results showing a 56%, or 64%, or 80% or even 95% positive outcome. Time after time I think, “But what about the other, 44%, 36%, 20% or 5%? How hard it must be to be one of those for which the new “wonder drug” doesn’t work?  I hear story after story about how a patients stem cell transplant failed after a few short months—or worse yet—never worked at all! To go through all of that and have the procedure fail? I can only imagine how frustrating that must be.
Thank you, Kate! Thank you, Pattie! It is easy for me to write about how cancer has changed my life because things are going well for me. But I must admit—let’s see how brave and positive and upbeat and inspirational I am after my multiple myeloma becomes refractory and I’m not doing so well. That is the ultimate test of commitment and resolve!

So be strong, be positive and be resolute, but also remember to be humble and respectful of other patients who may not be doing as well as you. And, to Kate’s point, if the person sitting next to you in your oncologists waiting room isn’t fairing well, it’s probably not their fault. They aren’t failing—their therapy is.

Feel good and keep smiling! Pat

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