Well, this is no fun at all.
I’m not silly enough to believe that a life with myeloma would be fun, but I’m kind of disappointed that it’s been such an unmitigated downer. I am, I can now see, destined to drag this goddamned disease with me into the grave. Come on, I knew that! Still, a bit of a break now and then would be welcome. Is that too much to ask?
Actually, I think the nastiness I’m experiencing in spades right now stems mostly from the chemo meds rather than from the myeloma itself. This past week would support my idea that the meds are as bad as the disease at the moment for making me feel tired, dizzy, and in pain.
I went to the hospital on Thursday for my bortezomib shot after taking all the rest of my chemo drugs in the early morning. I expect Thursdays to be non-days, and this one was certainly that. A non-day is one when I can’t gather enough strength to do much of anything. However, Friday and Saturday also turned out to be non-days and Sunday wasn’t much better.
I felt a little beaten down. Of course, I should have expected it because my local oncology GP did warn me that they were going to ‘challenge’ me with my chemo med doses. No more mamby-pamby half doses for me! I was to get the full meal deal! Yes, indeed. Silly me.
Then I figured that maybe I needed a good dose of positive thinking to counteract all of these drugs. Maybe all I needed was a little endorphin fix. After all, I used to teach positive thinking on the Knowledge Network back in the ‘good ol’ days’ of 1986 to 1992. I used to teach as Ehrenreich points out “that on many levels, individual and social, it is good to be ‘positive,’ certainly better than being withdrawn, aggrieved, or chronically sad.”*
The problem is I’ve learned a few things since the early 1990s, not the least of which are the limitations of positive thinking. The American Cancer Society on its website states very clearly:
An important part of coping with a cancer diagnosis is recognizing emotions and feelings. Treatment that deals with our emotions and relationships (sometimes called psychosocial interventions) can help people with cancer feel more upbeat and have a better quality of life. But there’s no good evidence to support the idea that these interventions can reduce the risk of cancer, keep cancer from coming back, or help the person with cancer live longer. Still, things like group support, individual therapy, mindfulness, and relaxation techniques can be used to help reduce distress and cope with the emotions that come with a cancer diagnosis.https://www.cancer.org/cancer/cancer-basics/attitudes-and-cancer.html
So, it seems that belonging to a support group has some positive effects, not on survival or anything like that, but in feeling less tired and in stress reduction. There is a support group in the Valley. I haven’t attended any of the meetings yet. I’ve been too goddamn exhausted to do that until now, but maybe next month! Then, maybe I’ll be less tired!
The American Cancer Society, on its website, starts off with this: When a person is told they have cancer, they might find themselves wondering:
- Did I bring the cancer on myself?
- Can my emotions really make cancer grow or affect the outcome of my treatment?
- Can I control the tumor growth by visualizing how my body is fighting the cancer or by thinking myself well?
- Would relaxation or keeping a “positive attitude” help cure my cancer?
I can easily reply an emphatic NO! to all these questions and the website goes on to refute each in turn.
In the rational explanation that many psychologists would offer today, optimism improves health, personal efficacy, confidence, and resilience, making it easier for us to accomplish our goals. A far less rational theory also runs rampant in American ideology—the idea that our thoughts can, in some mysterious way, directly affect the physical world. Negative thoughts somehow produce negative outcomes, while positive thoughts realize themselves in the form of health, prosperity, and success.✤
The upshot of the idea that negative thoughts produce negative outcomes is the notion that people bring their diseases on to themselves by thinking negatively. Never mind that this idea is completely debunked by the American Cancer Society and people like Barbara Ehrenreich, there is a strong current of belief ‘out there’ that we are the victims of our own negativity. That goes for people with chronic illnesses, auto-immune diseases, and cancer. If you’ve got it the ‘reasoning’ goes you’ve brought it upon yourself.
This of course dovetails nicely with the predominant capitalist morality in our culture which states that individuals are inherently responsible for their actions and weakness of all kinds is abhorred, shunned, and denigrated. If people exhibit any signs of weakness, whether they are poor or in ill-health, it stands to reason that they must be responsible for their condition. That’s why people, especially those caught up in a full-blown subscription to capitalist morality, often go to great lengths to hide their poverty and ill-health. They are also the ones that tend to judge most harshly the poor, the homeless, the disenfranchised, the physically disabled, the chronically ill and the aged, even if they themselves could be included in any one of the categories I just mentioned.
Myeloma is a disease of the bone marrow. It’s entirely organic. As of yet there is no cure for it. It will not respond to positive thoughts or negative ones either, for that matter. Ehrenreich writes that “There is a vast difference between positive thinking and existential courage.” ✦ If there’s anything I strive toward it’s existential courage. However, if you catch me in a moment of deep angst over my imminent (yes, ten years is imminent) death, cut me some slack. I can’t always be perfect!
*Barbara Ehrenreich, Bright-Sided: How Positive Thinking is Undermining America. 2009. Kindle Edition, Location 89.
✤Ibid., Location 125.
✦Ibid., location 145.
3 thoughts on “32 This is no fun at all.”
thank you for sharing your process Roger…. and your pain and frustration . For the last number of years, I’ve been familiarizing myself with ideas and concepts around the process of dying and the”thereafter” through the lens of Buddhism and the ideas around the bardo ( intermediate stage before whats next) and rebirth. What that has given me is the picture of not completely ceasing to exist on some level…..which is comforting in a way. Life is marvelous and who would want to loose their connection with those they love etc. etc. etc. and this experience called being human. My heart goes out to you wife and daughter and care givers. I look forward to your posts.
On Tue, Feb 25, 2020 at 3:49 PM Roger Albert – Always a Sociologist: Now Living With Myeloma wrote:
> Roger JG Albert posted: ” Well, this is no fun at all. I’m not silly > enough to believe that a life with myeloma would be fun, but I’m kind of > disappointed that it’s been such an unmitigated downer. I am, I can now > see, destined to drag this goddamned disease with me into the ” >
Hi Ed. I understand the deep-seated need most humans have for continuity through death, and not just any form of continuity, but continuity with physical body intact. I have but a cursory knowledge of Buddhism so can’t comment on that, but my next blog post deals with my sense of what continuity means. Part of what I mean by existential courage in my last post is the acceptance of the dissolution of the “i” into nothingness, because that’s where I think “I” ends up.
Hi Roger you are an amazing writer and teacher who expresses your experiences with clarity and strength. I admire your ability and willingness to describe these experiences medically/scientifically and share your emotional interplays.
I can relate to your observations about the effect of positive thinking. Although it has made me feel better temporarily at times, I usually fall back on hope and ” What’s the next step?” I frequently don’t have an answer at that place.
i hope things will get better for you on this part of your journey I send you lots of love and healing thoughts John
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