Chapter Three - Spirit Animal (June – December 2018)
March 01, 2020- 12 min read
The Great Cancer Adventure
Chapter Three - Spirit Animal (June – December 2018)
Chasing a cure, or at least a tailored treatment plan, Betty and I have just returned from the Cancer Treatment Centers of America (CTCA) location in Zion, IL an hour or so north of the Chicago Loop. At the time, we were told the news of my condition is even worse than we had thought, in that I'm considered Stage 4, at least by them, since I have metastatic disease. Perhaps this is a matter of interpretation, and different experts reserve the right to look at things differently, but no way is this good news. Having had the oncology consult Thursday afternoon, we canceled out the rest of the three-day initial visit, as there's nothing more to be done just now, but we're coming back.
Turns out CTCA in Chicago is partnering with the American Society of Clinical Oncology (which coincidentally enough has its annual meeting in Chicago this weekend, and our guy is attending) and TAPUR (Targeting Agent and Profiling Utilization Registry); if my tissue sample from STL, which they already have, shows certain genetic markers, then treatment's more individualized, which sounds good to me. I'll be going there every 2-3 weeks and staying a couple of days each time for treatment. If there's no marker and, consequently, more traditional treatment is indicated, then, depending on what's recommended, I can have that here in STL or perhaps at CTCA. It will take them a couple of days to do these tests, but already we have an appointment scheduled in a week or so.
(The first Mercy Oncology Doc left in March/April to set up another program at a different hospital, although it later “converted” to Mercy, likely the plan all along. I could have gone with him and was tempted to do so. After all, he was the one who said “Hard to treat and likes to come back”, so because of his unabashed frankness, Dr. D was my guy. Even so, I stayed with Mercy, effectively being handed off (change of quarterbacks, right?) to Dr. W., who told me, when I first saw him in this part of the journey, that 1.) now, my only chance for a cure was the surgery, and 2.) why had I waited so long for additional treatment? I wasn’t convinced of the wisdom of the surgery, felt like I was being blamed for a lack of finesse and communication on the hospital’s part during this period of transition rather than on any shortcoming of mine, and wanted a second opinion about the surgery anyway, so we went to Barnes again, just as reported above.
I was, initially, interested in a clinical trial at Barnes in St. Louis, but when that oncologist, or his staffer, had some difficulty in placing me in a clinical trial there, after being promised I was already in it, this afforded us the opportunity of taking a step back and looking at things more strategically and/or looking into a third opinion. At this point, I had had enough. The surgery, even if it worked properly and without complications, looked like it might not get all cancer and I’d be left weakened and compromised either way. I wanted to be me for as long as possible and surgery, though it offered the best chance to get out of this whole, sounded too risky. I’d take my chances with treatment. But neither at Mercy or Barnes, at least for now. Betty was on board with this, as she wanted to go with a third opinion anyway.
Betty and I have different recollections of the next order of events, but I will attest her encouragement to investigate other alternatives ultimately led to my going to CTCA. Between us, we telephoned MD Anderson, Dana Farber, and Mayo, among others, all of which offer clinical trials, any one of which might do me/us some serious good. The trouble, however, with clinical trials is the patient may or may not be given anything other than a standard of care, as these are typically double-blind studies, and a standard of care can be provided widely, so these research hospitals might not be doing anything for me I couldn't perhaps get at Mercy, much less Barnes. On the other hand, I was lukewarm at first about CTCA, seeing its marketing as sentimental and cloying, but was ultimately won over by their patient focus. American Medicine needs to do so much better; CTCA already does. Betty's recollection is she initiated these calls; while she might be accurate here, we were both dialing fast and furious at this point and I might have reached, for example, CTCA, while she was on the line with them, too.
In reviewing this and comparing notes, Betty remarked that a colleague at work told her she’d sent her medical records to Mayo Clinic and was seen immediately. Neither of us had realized how easy it could be to get an appointment at one of these famous, prestigious hospitals and cancer centers when sometimes one waits weeks and weeks for a follow-up appointment with our regular caregivers. Something's not right in all this.)
Being about to start the second round of cancer treatment and, while having every confidence in the outcome and yet given to contingencies, I am planning a Pre Wake, with the date, time and place TBD. We are, nevertheless and just in case, working on the playlist. Indeed, I do welcome requests, but we are leading with perhaps my all-time favorite. The Tractors – “Boogie Woogie Choo Choo Train”.
Had a second Keytruda treatment for esophageal cancer yesterday. It's immunotherapy which matches the genome of my tumor and it’s had some good results in various kinds of cancers, including esophageal. Fingers crossed.
Last night, I dreamed someone close to me kept a huge, ferocious tiger as a pet. Someone else, trying to be helpful, showed me a small snarling dog and said it was the tiger, but I was having none of it. Later on, from the top of a nearby building, I spied the tiger running in the street. Huge, strong and beautiful.
Been thinking of the tiger and what it means, along with the significance of the snarling dog. I think the snarling dog is my cancer, and the tiger is my spirit animal, my protector. So who's the Old Man in the Mountain? Can’t be me, as I'm a handsome old man.
While in the Peace Corps in Korea in 1973-75, I was introduced to hangings of the Old Man of the Mountain, who had a tiger, a horangi, for a pet. There’s no dog. This’s stayed with me.
I've had three of the six prescribed Keytruda treatments and so far, so good on the side effects, some of which are serious indeed. Such as death. A few weeks after the sixth treatment, I get another test (a PET Scan, I think) to see how things are, and, if necessary, there are individualized treatment options after that, so all of this is encouraging.
I don't feel like I have Stage 4 Cancer, but then again I'm not certain what that's supposed to feel like. I'm often a little fatigued, which may be because I don't sleep especially well, but I'm sufficiently rested to once again go to the gym several times a week where I work out hard 30+ minutes a time, both cardio and weights. I do like the mindset this diagnosis provides me. Knowing I am on the edge of the precipice makes me value life-on-life’s terms even more than my spiritual path alone has done. I have never felt more alive.
Recently, I began spending 30 minutes a day, four-five times a week, studying German, a subject I took in college. It's for the mental exercise, as much as anything, but I’ll be able to converse at least a bit, should circumstances arise. I may never use it conversationally, but that doesn’t matter. I love its precision.
We’re just back from a trip to the Tampa Bay area of Florida where Betty and I shared a house for about a week with Elizabeth (daughter), Sam (son-in-law), Ramona (granddaughter), Peter (son), and Nicole (daughter-in-law). Andrea (niece) and Jonathan (nephew), both of whom live in the area, spent most of those days with us, too.
Betty and I had planned to host the kids (Elizabeth, Sam, Ramona, Peter, and Nicole) on some sort of overseas trip to celebrate my retirement, but, because of my health and their schedules, we had to postpone this for so long that we put this Florida trip together on rather short notice and jumped at the chance. Had a great time. We did some touristy type things, which didn't, unfortunately, include going to the beach (Red Tide – good thing Climate Change and Global Warming is all Fake News!), but mostly we just hung out and spent time with one another, which was what I wanted anyway. Perhaps my highlight of the trip, however, was when The Squirrel (granddaughter) and I both got (temporary!) tattoos. Hers was a mermaid and mine was a dragon. Neither of us washed that arm for weeks thereafter, and when we spoke every Sunday, we showed each other we still had ours.
Gentlemen, whatever you might have done in your life to try to catch the eye of a partner, is nothing compared to what you’ll do to try to impress a Pre-K granddaughter!
Betty (who has been great of course) and I have just returned from the most recent immunotherapy through Cancer Treatments Centers of America, where I received Keytruda treatment #5 of 6. Back there in a couple of weeks for #6 and then a couple of weeks later, just before #1 of the second round of 6, there’ll be some tests to see what’s transpired and what’re next steps. Some patients with my genetic marker have good results, even remission and even the absence of disease (a cure!?!), which of course means I'm hoping to be among them, but we'll see.
So far, so good (mostly) on tolerating the treatment's side effects, one of which is joint pain. I have a good bit of that, anyway, from various injuries to back and hip and am taking medication, but the pain’s gotten a little more severe. This has meant I've had trouble sleeping and am limping more so than previously. I've seen the Hip Guy (orthopedic surgeon) who ordered some more PT, which begins next week, and I see the Spine Guy (different orthopedic surgeon) a week or so later. Somewhere in this mix, I'm hoping to have sufficiently decreased pain to where I can sleep better and have a smoother gait. Keeping all three docs (two orthopedists and one oncologist) informed is my job.
Just had Keytruda treatment #6 of 6 for my esophageal cancer, with some pesky lymph node garnish; nowhere near as bad as chemo/radiation, but still no picnic. In a few weeks more tests to see what’s next. Remission and even “the absence of disease” does occur I’m told, so am encouraged, but we’ll see. Important as always to manage expectations.
Following 6 of 6 Keytruda Treatments through Cancer Treatment Centers of America (CTCA), I had a CT Scan which showed almost all my assorted problem areas had improved, some considerably. The one area which looks like it hasn't changed much at all, however, is the esophagus, the site of the primary tumor, so I had an endoscopy this same trip but it will take a week or so before the pathology results are available.
Because of all the improvement, I'm to do Keytruda for another three months, which works out to six treatments, I think, as these are once every three weeks. Keytruda has its side effects to be certain, but after taking chemotherapy and radiation therapy at the same time about this time last year, the side effects of Keytruda, to date anyway, are much milder, so I’m pleased with this course of treatment and have no problem continuing it.
Overall, I'm quite pleased with where things are. I fully expect this cancer will eventually get me, unless something else does first, but it looks like, for the immediate future, at any rate, I will have a good quality of life. In addition to the gym regularly, I have the benefit of a loving community and family and have found ways to stay involved in life. No complaints.
Just heard a summary of the pathology results from an endoscopy performed last week, which was that the primary tumor, adenocarcinoma of the esophagus, is still present, but it is a bit smaller, which is of course very welcome news.
“Illusions of Cyn", with a tremendous cast and crew, is now available on Amazon. I'm not unbiased of course since I wrote the screenplay, but this is very well done and is well worth seeing.
Betty and I plan on having a showing in our home sometime in mid/late November, after the St. Louis International Film Festival which begins Wednesday 11/1. In the meantime, it is available now, as I just downloaded it!
Amazon unceremoniously and without explanation pulled it before the end of the calendar year, so we never had a screening party.
Treatment with Keytruda continues to go well, and even if this immunotherapy doesn’t do the trick, there are other options. The future will out of course, and there’re no guarantees, but there seems to be a very real chance I’ll need to have a plan for an Act Three. Wow!
I’m strangely disappointed, however, in that I no longer feel like I’m living on the edge, no longer feeling like I’m living every moment to the fullest. There’s just no pleasing some people.
“Illusions of Cyn” is still my favorite 2018 film!
Being retired and doing fairly well (as far as I know!) in my illness, I have the time and energy to be more actively involved in civic affairs. For example, I'm paying more attention to local issues and have been vocal in bringing problems to the attention of appropriate authorities. While this might result in some dismissing me as a crank, it's important for me, for all of us, to speak up, to never look away.
The late President Bush, Sr. (and I seldom praise any Republican, but this is one occasion) observed that when we leave the stage, whatever goodwill we might have earned is lost, so we should use it now. Indeed, we don’t want to be overdrawn in this account, but I want to spend all of mine now, in this lifetime. It might do some good, and it might encourage others to speak up as well. Sounds grandiose, I know, but since some of us are too marginalized, defeated or ill to speak for ourselves, maybe I can make some noise on their behalf.
In retrospect this year, I’m reminded that, while I insisted early on in my treatment ultimately all treatment decisions would be mine, I’ve leaned on, listened to, and depended on Betty even more than I thought I would. For example, some of her fierceness in fighting on my behalf seems to her, and I can now agree with this assessment to some extent, to be struggling not only on my behalf, like with insurance companies to approve Scans, but also to move me to act more quickly, such as to seek a third opinion and ultimately expand possible treatment options sooner rather than later. I was the one who decided against the surgery, so that’s on me, come what may. And I ultimately selected CTCA, rather than continued care at Mercy, over other alternatives, but I might not have moved there so soon had it not been for Betty; I might have, for a while anyway, been satisfied with a perfectly legitimate standard of care, rather than seeing what else is available, e.g., immunotherapy. My son, Peter, just to put this in perspective, was with us when she fought for the scan early this year, and he’s convinced the tiger in my dream, the horangi, is Betty, as she was indeed fierce with the insurance company and also with me.
Also, I had other dreams of this tiger. One of which was that she (I have long since come to believe the tiger is a female) walked up and down the hallway outside the room in which I was resting, looking in on me from time to time, and once even came into the room and sat beside the couch on which I was napping, as if she were checking on me. Got to hand it to Peter for seeing this before I did, but I should have known all along the tiger, my spirit animal was Betty, and Betty's the tiger. She’s kind, loving, and patient, but she can be ferocious. I think she might be sweet on me.
Betty had a dream of the tiger, too. In hers, the tiger walked up close to her, looked her directly in the eye to make certain the beast had her attention and demanded her respect.