To fix or not to fix, in which—be forewarned—Doña Quixote grossly overshares
Featured image: Miracle granted to Puglisi Giovanni, 1980. “Medical Miracles: Medical Imagery in Ex-Votos.” U.S. National Library of Medicine. (An ex-voto is a religious offering given in order to fulfill a vow.)
“At 76, I am old enough to die.” So says Barbara Ehrenreich, author and political activist—who describes herself as “a myth buster by trade” and has been called “a veteran muckraker” by The New Yorker—in her latest book, Natural Causes: An Epidemic of Wellness, the Certainty of Dying, and Killing Ourselves to Live Longer. In Natural Causes, she takes on the myth in our culture that we can gain ultimate control of our health, both in body and mind, by following the “right” diet/exercise/meditation/supplement regimen and availing ourselves of our medical insurances’ “wellness” offerings such as annual doctor’s exams, mammograms, and follow-up visits after various treatments, not to mention the alternative cures that are now available also in medical settings. We believe that by adopting such practices we will be able to stave off death almost indefinitely. We cannot and will not think of death as an inevitable, natural occurrence. She argues that what “makes death such an intolerable prospect” is our belief in a reductionist science that promises something it cannot deliver—ultimate control over our bodies. It’s time, she says, “to rethink the quest to control aging, death, and disease—and the fear of mortality that fuels it.” We have to give up the idea of mastery, she urges, and reconcile ourselves to the idea that our bodies will ultimately wear out—or suddenly give in to cancer, or a bad flu, or an accident. Armed with a doctorate in biology and a bad-ass skepticism about any body of institutionalized wisdom, Ehrenreich ventures “into the fast-growing literature on aging, disease, and death, tracing her own disaffection with a medical and social culture unable to face mortality”(Victoria Sweet, “Your Body is a Teeming Battleground.” The Atlantic, May 2018.)
Image source: memes
Cartoon above: 1). Oh yeah! I saw that band back in 1989. It was a great show! 2). 1989? How old are you? 3). Old enough. 4). ..old enough to what? 5). Die.
Walking her talk, Ehrenreich no longer follows the usual practices “expected of a responsible person with health insurance” of showing up for cancer screenings (she was treated for breast cancer with surgery and chemo in 2001), annual exams, and other “routine” visit to her doctors. “Once I realized I was old enough to die, I decided that I was also old enough not to incur any more suffering, annoyance, or boredom in the pursuit of a longer life. I eat well, meaning I choose foods that taste good and that will stave off hunger for as long as possible, like protein, fiber, and fats. I exercise—not because it will make me live longer but because it feels good when I do. As for medical care: I will seek help for an urgent problem, but I am no longer interested in looking for problems that remain undetectable to me….Not only do I reject the torment of a medicalized death, but I refuse to accept a medicalized life.”
While I am not convinced by every argument Ehrenreich makes in Natural Causes, I can’t agree more with her call for a more thoughtful and ethical approach to the consumption of medical care, particularly by frail elderly people and, apropos to my life, by those of us with dementia. I believe that the closer one comes to death, the more urgent these questions become. The statistic that we spend one third of our health care dollars during the last year of life is well known. In the words of Margaret R. McLean, of the Markkula Center for Applied Ethics and the Center of Bioethics at the Jesuit Santa Clara University, “the trouble with this oft-quoted statistic is that we don’t know when we begin the year that will turn out to be our last. We seek care in hopes of restoring health. It can take months or even years for us to discern that, in fact, a person is dying and even longer to accept that someone we love has slipped into the dying process.”
Image source: memes
If you have microvascular dementia—let’s take me for an example—you can estimate how many years you still have to live based on your age at diagnosis and the severity of your disease at the time of diagnosis. To write this post, I calculated my life expectancy (without considering my dementia) based on my current age (69 in September), weight, family history, and other indicators (see calculator). If I want to figure in my dementia, here is what I know: vascular dementia is known to cut life expectancy down by 50 percent—it causes little strokes all the time and could result in a major stroke as well. It is worse from a mortality perspective than Alzheimer’s (“Stages of vascular dementia and life expectancy of stroke dementia patients” (Bel Marra Health, Alzheimer’s. January 10, 2018). If all of this is taken into account, I have 10 years or less left to live. My level of functionality right now still meets my criteria of a worthwhile quality of life. How long that will be the case is of course as undeterminable as when the last year of your life starts.
Given these considerations, how do I (together with Peter, of course) figure out what medical intervention to accept when something goes wrong with my body? I have a “do not resuscitate” statement in my Advance Directives in case of a serious car accident, heart attack, stroke, and so on. But how does Peter or our kids know how serious any of the aforementioned are? Must I be resuscitated to give the family time to see how much damage has been done? And what about the more mundane medical interventions that regularly cross my life path? What about a small surgery? A big one? People with dementia are particularly susceptible to memory damage when given anesthesia. When I recently was a candidate for surgery, our surgeon-to-be informed us that full anesthesia would likely make my memory loss worse permanently. The question then is what would be worse: losing additional memory or living with the defect? That, of course, depends on what the defect is and how it affects my quality of life.
The “something” that went wrong with my body this time was located in the alimentary canal. While I will later be explicit, naming specific body parts, I thought that a page from a children’s book would let everyone into the discussion in a droll way. (The last phrase will be funny to Afrikaans speakers, I hope, but is sadly untranslatable.)
A page from the children’s book The Chew Chew Poop Pee Express: A Magical Journey Through the Digestive System, by Susan LaBarre and Janine Nicholson.
Now that you have been FOREWARNED, It’s time to tell you that the “something” that went wrong with my body was that I had a partial rectal prolapse. Rectal prolapse occurs when the ligaments that tether the 8-inch long rectal chamber to the backbone fail, causing the rectum to slip and fall onto the pelvic floor. Since things get a bit crowded down there when that happens, the rectum gets pushed out through the anal opening. As it goes out, it “turns inside out”, exposing the inner lining. In a full prolapse, the whole rectum bulges from the rectal opening. With a partial prolapse, the inner lining only partly protrudes.” Luckily,” this is as far as mine got. Prolapse is associated with mucous drainage, bleeding, soilage, incontinence, and, rarely, pain.
As bad as that sounds, the condition is not life-threatening. Some patients prefer to live with the prolapse rather than fix it. For me, the effects of living with it would take away too much of the qualities of life that I value: smelling good, being clean, not having to keep my digestive cycle going with the kind of laxatives you you have to use before a colonoscopy, and the ability to be intimate. Peter and I decided pretty quickly that surgery was the way forward for me.
Image source: Bert and Ernie memes
Now for a reveal: this was my second rectal prolapse—five years ago the same thing happened. I chose surgery then too.
My first surgery—known as a rectopexy—took place 6 weeks before our family trip to South Africa in 2014. I was born with a redundant colon—much too long—which is often the state of affairs that leads to a prolapse. People have a genetic predisposition for a redundant colon. The operation to shorten it consisted of removing 18 inches of my sigmoid colon, sewing the rectum and colon back together, and re-attaching the rectum to the backbone. This required a 3 ½ inch cut on my abdomen that would take 6 weeks to heal. 
A. Lateral rectal stalk B. Redundant sigmoid colon resected C. Anastomosis (connection restored); sacral fixation (re-attaching rectum to backbone)
Nothing was going to stop me from doing my dream trip, though! I started walking in the hospital, as soon as the anesthesia haze wore off. I had to stay the night, but got to go home the next day. At home I walked quite a bit between taking pain tablets (no narcotics) and lying down (a lot) in between. By the time we left for South Africa, I was walking 10,000 steps a day. I was so grateful for my surgeon, my family support system (especially Peter), my doctor, and that we had medical insurance.
Above: The junior Saunderses in Groot Brak, South Africa, where the lagoon is tinted amber by tree roots. From the left, Adam, Cheryl, Newton, Aliya, Marissa with Dante on her back, Kanye. Peter and I were there too, visiting family and seeing the sights (2014).
My surgeon had warned me that rectopexy sometimes failed, and unfortunately—five years later—it did for me. However, Peter and I both trusted him and went back to him.
My second surgery on July 31st would be robotic and laparascopic—instead of another abdominal cut, the surgeon made only five one-third inch “ports” into my abdomen. To make sure another prolapse would not happen again, I would have “ventral mesh rectopexy,” or surgery in which a little plastic hammock is inserted to support the rectum so that it does not slide down again.
Description on image above: A mesh (a piece of plastic or biodegradable material) is secured to the pelvic floor muscles on both sides of the rectum at the bottom. The top end of the mesh is then secured on to the spine, lifting the rectum upwards to correct the prolapse. In women, the mesh is further attached to the top of the vagina to enhance the overall support structure, as well as to prevent possible future prolapse of the uterus.
Above, Gerda and Peter in the hospital after Gerda’s surgery.
Although my doctor had told me that I would have to stay the night, I did so well after the surgery that I could go home the same day—albeit late at night, way past my bed-time. This would have been impossible, of course, if I did not have Peter to care for me—above and beyond and on top of his usual care of Doña Quixote. He cooked and fed and calmed and cajoled me into a speedy recovery. On the second day after surgery, hanging onto Peter’s arm, I was able to walk the 3,000 steps or so to Barnes & Noble and back to have coffee.
My outward appearance at this stage belied what was going on in my abdominal region. My abdomen was so swollen that I could wear only pants with elastic waists for about two weeks afterward. The swelling added 5 pounds to my weight. In addition, there was a little glitch in the surgery procedure: a tiny subcutaneous blood vessel got nicked and bled under my skin unbeknownst to my doctor, causing an enormous bruise.
Above: Since even my revelations have a limit, Peter used a photo program to “dress” me in a yellow polka dot bikini that could not be “teeny-weeny,” because it had to cover the bottom half of the huge bruise. The white stripe between the upper and lower blue-black areas is my previous surgery scar. The dark color continues below into my yellow dot bikini and actually extends under it down to the top of my legs. When my doctor saw me at my post-op check the next day, he was pretty shocked. While he knew that such bleeding sometimes occurred during surgery, it had never happened to any of his patients before.
It is now 4 weeks after the surgery. I have clocked 13,000 steps on several days last week. Best of all, my abdominal swelling is gone and I once again fit into my usual clothes.
Gerda and Peter, back to “normal” and hanging out in Hidden Hollow.
Just when you would think my surgery-whisperer would have his time back to spend on his own projects, the universe visited upon us another plague. While we were at the pharmacy picking up one of our usual prescriptions, Peter suddenly doubled over in pain and we had to leave for home right away. He was white and sweating, but insisted on driving home, where we gave him 800 mg of ibuprofen every four hours, and the same amount of Tylenol in between. It barely made a dent in the pain. We considered a trip to our doctor. By now, however, he was vomiting and having to go to the bathroom at a second’s notice, and felt that he could not go to the doctor or emergency room in Uber, as I suggested. After a while the pain subsided, and we thought it was over. During the night, though, he hardly slept because of recurring batches of pain. By midday teh second day, Peter agreed that he had to get to a doctor. Since our family physician had the day off, we decided on our nearest Instacare. Newton, who works only a block away drove us there in the middle of his work day. The Instacare doctor said they did not have the imaging equipment to see what was wrong with Peter, and told us to go to the emergency room. Newton took us there, then went back to work.
Even though Peter had lost all the color in his face and was sweating and vomiting, he did not rise to the top of the triage for almost two hours. I have never seen him in so much pain. Once a cubicle opened up, it took another long time before a doctor could see him. Then came the imaging—as the doctor suspected, he had a kidney stone. It was his second one, but the pain was so much worse that neither he nor I thought that was the cause. Even after the diagnosis he received no pain medication—the hospital has a long procedure of amassing signatures before the hospital pharmacy releases a prescription. In the meantime, Marissa had arrived. Together we advocated for something for Peter’s pain until the nurse became rude. We then decided to be a bit more insistent. All the while each of us held one of his hands as he writhed in agony. After a long, long time, the medication arrived and he finally got relief. By now it was 7 in the evening. Marissa went home to spend time with Dante. I sat by Peter’s side and ate the food Marissa had brought—a lovely, home-cooked lasagne roll and veggies, still warm in its padded container. Peter had no interest in food, he was almost totally out of it because of the heavy medicine. At long last he was discharged—by then it was 11 pm. Marissa came back to the hospital to take us home. For days afterward, we would still eat the lovely soup and additional lasagne that she had made .
Since there was nothing to do about a kidney stone but wait for it to come out, Peter spent another day with stretches of intense pain as the stone worked its way through the urinary tract. Fortunately he had medication. Finally the stone came out.
Above, left: What the kidney stone felt like. Right: What the kidney stone really looked like.
Talk about The Chew Chew Poop Pee Express—during the first half of August it made a palbable track across the senior Saunderses indeed!
Between the two of us, Peter and I consumed a lot of health care dollars over the last month. There is a not-widely-shared or -advertised formula in the health care system to determine wether surgery or any other expensive medical treatment is “worth it”—it seems, apparently, that if an individual spends no more than $50,000 for each additional year of quality life gained by the treatment, it is “worth it.” To me, that sounds a lot. Which is hypocritical coming from someone who herself had 3 surgeries this year (yes, there were my eye-lid surgery and bone spur removal before this one) with a total cost (of which Medicare paid the bulk) of somewhere between $25,000 and $30,000. This for a woman who has no idea for how long she will have the brain power left to appreciate it.
A week after my surgery, I had a memory lapse that may have been caused either by my anesthesia or my usual dementia damage—there is really no way to know. I went to Barnes & Noble to look for three books, the authors and title of which I had written down on a piece of paper. After finding the right shelf with the help of a nice young man, I started searching for my first book, one by Byron Katie, the author and speaker who teaches a method of self-inquiry known as “The Work,” which I need in relation to a book manuscript I am reading for a friend. My first problem was that I kept forgetting that “Katie” was the last name of the author and Byron her first name. I would start looking under the K’s on the shelf, and then think, “How dumb, I should be looking at the B’s.” I would sidle left-ways toward the B’s, consult my piece of paper, and step back to the K’s. Finally, all the while repeating “K, K, K,” I managed to stick to the K’s. There I had trouble with the second letter in the last name “Katie”: Okay, told myself, I just have to start at the Ka’s. Somehow my mind flipped and I when I was aware again of what I was doing, I was standing at the last names starting with “A.” And so on. I eventually found the book, most probably by serendipity more than logically working it out in my head.
I was quite shaken by this new deterioration, and told Peter about it over coffee later in the afternoon. As always, he listened sympathetically and acknowledged how disturbing it must have been for me. Could it have been the surgery/surgeries? In the context of the overall quality of my life, though, I am not second-guessing my decision about the rectopexy and the bone spur removal. I could have lived without the eyelid surgery, though it is nice to see things above my head without craning my neck. After the last (and biggest) surgery in particular, I am focused on, in the words of cardiologist Joel Kahn, “the ancient practice of ‘mindful elimination’ in the Jewish religion. That’s right — paying active attention to our pooping and peeing.” (“The One Thing You MUST Do During Your Next Poop.”)
Image source: Asher Yatzar, art by Paul Levi; on Bill Albert’s blog.
Dr. Kahn explains this ancient wisdom as follows:
“In the Talmud, the book of Jewish law, there’s a particular blessing, known as the Asher Yatzar, still practiced by observant Jews, that shows appreciation for the miracle of elimination:
‘… when one comes out of a privy he should say: Blessed is He who has formed man in wisdom and created in him many orifices and many cavities. It is obvious and known before Your throne of glory that if one of them were to be ruptured or one of them blocked, it would be impossible for a man to survive and stand before You. Blessed are You that heals all flesh and does wonders.'”
The Asher Yatzar was intoned after every trip to the toilet. And we think that “mindfulness” is a 21st century invention!
My supposed “mindfulness” about the consumption of health care illustrates the difference between our theoretical explication of our life principles and their practical application.
Death Comes to the Dinner Table. Giovanni Martinelli (between 1625 and 1638). Raleigh, North Carolina Museum of Art. The Art Tribune.
“It is one thing to die into a dead world and, metaphorically speaking, leave one’s bones to bleach on a desert lit only by a dying star. It is another thing to die into the actual world, which seethes with life, with agency other than our own, and at the very least, with endless possibility” (Ehrenreich, Natural Causes).
August 29, 2018 @ 8:22 am
And here I was thinking Shinta Cho’s, The Gas We Pass, was the ”bomb.” Gerda, your writing, your honesty, your vivid and detailed writing (including your overshares), made this a hilarious but very integral read.
This was a conundrum I faced as caregiver for my Mom, who also had Dementia; it was a subject matter I vacillated with on more than one occasion. I felt at times her dignity or the importance I placed upon it warred with my desire to keep her healthy with a better quality of life. Unfortunately for me, Mom was not able to articulate, nor do I believe was she was even able to grasp the situation/decision at hand, so it made my singular decision making fraught with uncertainty, and guilt. I believe everything worked out for the best, with Mom, or at least I have no second thoughts—no regrets.
Your life, journeys, adventure, love, and ability to face the world on its terms, meaning we can’t control a thing about life but how we deal with it, has certainly offered valuable information and invaluable personal insight!
Thank you. I enjoy and am enriched by all your writings. Please know my best thoughts, wishes and prayers go out to you and yours! Quite frankly, Gerda, I’d read the telephone book if you wrote it!!
I wrote a children’s book about my experiences with Mom that will be available in print mid-November; I’d be honored to send you a copy if you have a desire to read it?!
Be well, beautiful lady and her knight in loving armor, and know I look forward to reading your next story!
September 4, 2018 @ 4:41 pm
Thank so much for making me laugh, Donna! I have not encountered The Gas We Pass, but immediately looked it up. I’m honored that my writing seemed to you comparable to this fabulous book! Thank you so much for your kind and supportive comment. It is so interesting to hear about your dilemma with your Mom–I’m sorry you had to go through this with her, but from my perspective you did exactly the right thing. I always tell Peter and my family that—while I hope and trust they will honor my request for an assisted death–it really would not matter to me what decisions they made once I no longer no what’s going on. I would want their fresh, undamaged brains to do the thinking on my behalf when I no longer can think rationally. Your decision was perfect! I inferred from your comment that you were a good writer, even before you told me the delightful news that you wrote a children’s book! Congratulations! I would love to have a copy. Not only will I read it, but I will make sure that my family and grandkids also read it. I would be happy to buy a copy if you would just remind me when it is out. However, to have your signature in it, I would love it if you sent me one. My address is 1235 E Wilmington Ave #704, Salt Lake City, Utah, 84106. YOu are so supportive and I appreciate you very, very much.I wish you and yours all of the very best! xoxox
September 6, 2018 @ 2:50 pm
So it shall be–my pleasure. Thank you, Gerda.
September 6, 2018 @ 9:16 pm
xoxox
September 2, 2018 @ 5:49 pm
such wondrous writing! I feel your pain(and Peter’s) more acutely than before! Gerda…I don’t want a prolonged unlivable life either, but YOU are worth some big math progression squared more than 50,000 dollars!
September 4, 2018 @ 4:43 pm
YOu are so kind to be my writing cheerleader. And thanks for your math formula! I am so honored that you think I should still stick around. I am so excited about seeing you this week. Will be in touch. love you.