Chapter One - The Hammer Falls (September - December, 2017)
February 28, 2020- 22 min read
The Great Cancer Adventure
Chapter One - The Hammer Falls (September-December, 2017)
I discovered quite by accident and coincidence just last week that I have cancer. My urologist was looking for something in my bladder that wasn’t there, but the scan showed something wrong in my chest. Having already had a routine colonoscopy scheduled, I called that Doc, who agreed to scope me on both ends which is why I was able to have this done so quickly. I woke up from the procedure with bloodstains all up and down my left arm (having been placed on that side during the procedure), so I was not surprised when told that several biopsy specimens had been taken, all of which looked like cancer, though this was subject to verification by a pathologist.
The GI Doc further explained that I needed to schedule appointments with various specialists, all of whom were waiting on my call. (If it wasn’t apparent already that I was really, really sick, when doctors tell you to call other doctors, explaining that they’re waiting to hear from you, you know you’re in deep kimchi. Yes, this was an effective phone tree and I am grateful for his being so forthcoming and helpful, but there is no misunderstanding the seriousness of the situation.) He said we’d have a rough road ahead for the next couple of months. Curious, Betty and I were both present at this conversation, but have dramatically different recollections of important details. She heard “tumor” for example, whereas I heard “mass”.
(While recognizing that my original notes, observations and social media postings/rants about the Great Cancer Adventure accurately reflect my state of mind, and therefore my perceptions at the moment, it’s also important to include herein, at least from time to time, some reflective comments for perspective. So here goes the first instance of this….
Yes, that I was just then coming out of the fog of anesthesia might explain some part of my distortion, or that one or both of us stopped listening carefully when the bad news was first articulated, but even though we are each still convinced that our version of events was the factually accurate one, this differences in what we heard led Betty to record on her cell phone all medical conversations, something she now does routinely and shares with immediate family. These recordings are all done in full view of the Docs, some of whom have even commented on the wisdom of doing this, and there never has there been an objection; as of mid-September 2019, she’s recorded 50 of these.)
Things happened quickly after that, and the order of events is a little fuzzy, but all of this happened between mid-September and early October 2017. Betty and I learned from the Oncology Doc that the news is even more dire than it first looked like it might be, in that I have Stage 3B cancer. He also said that, while I would be working with and seeing other specialists, he was the quarterback of the team and would be calling the plays; whereupon I told him that I was the center for my high schools championship team (Dreux American High School, France –Go Vikings!) and the play didn’t start until I decided to hike the ball. Which is another way of saying that, after consultation with loved ones and medical experts, any treatment decisions ultimately were mine and no one else’s. Having had that conversation, we’re going to get on fine.
I asked him my prognosis, to which he responded that if we did nothing, I might have six-twelve months, but by treating it aggressively I might have three-five years of good quality of life, since what I had, adino carcinoma of the esophagus (we had the biopsies by then), was hard to treat and liked to come back. He pointedly never said anything about remission or cure, a frank assessment I appreciate being a realist and a planner. Not exactly how I expected to spend the rest of this calendar year and into retirement (previously scheduled for May 31, 2018), but there it is.
After the Oncology Doc we met with a Thoracic Surgery Doc who explained that attempting to remove the tumor before chemotherapy (six rounds of one weekly session each) and radiation (28 daily sessions) was not indicted, in as much as the surgery itself, even if it worked (that is, got all the cancer), was a life-changing event, e.g., a typical hospital stay for this surgery, actually two surgeries performed by two different specialists, in nine days.
One of my life’s goals is to live a long, happy and at least remotely successful life without ever playing a round of golf or ever having a tattoo. The first of those two is still safe, but now I have three tattoos, each about the size of a dot from a ballpoint pen, one on each side of my rib cage and the other just below my sternum. These are used to line up the radiation. Also, the radiation oncology techs made me my very own plastic mold to hold me in place during treatment. Even has my name on it. I went under anesthesia, even if only lightly so that a port might be inserted in my neck and chest to allow for easy access for blood draws (for lab tests) and chemotherapy infusions. It’ll be there at least for two years and longer if I live. Another sign I’ll be engaged in this struggle for the long run.
Somewhere along the line in these early days, shortly after having told daughter, Elizabeth, and son, Peter, they showed up at our house, along with daughter-in-law, Nicole, at short notice from two different eastern US cities; son-in-law, Sam, and granddaughter, Ramona, couldn’t make the trip. They were with us, Betty and me, when we met with the Oncology Doc and the Radiation Oncology Doc as they outline the treatment plan ahead, i.e., six rounds of weekly chemotherapy (Carboplatin and Taxol) and 28 dosages of radiation.
I don’t know how this will end, other than that I will play this all the way out, and I am not alone or afraid, at least not now. I have Betty and the kids (well, my “offspring” and their spouses as they’re all adults in their 30s!) on my side, so I know I’ll be OK no matter what happens. Nobody gets out of this alive, anyway, and this diagnosis would suggest that I will not die from the infirmities of old age.
(Facebook post from my son, Peter, today.)
“Please keep my Dad in your thoughts and feel free to send any good wishes you may want his way. He's my biggest influence and the reason I've become the man I am today (for better or worse, har!). So even if you've never met please send encouragement via FB, it would mean a great deal to me.”
The treatment's at Mercy Hospital in St. Louis. Met today for a second opinion with an oncologist from Barnes, the more famous cancer center here in St. Louis, and had the original treatment plan confirmed. Chemo and radiation begin on Wednesday.
Tomorrow’s coffee, Peru Chirinos Cajamarca, which I made today as always, along with a package of Korean Pork Barbeque Jerky, is courtesy of my son and daughter-in-law. I may be sick but I have a great life.
Chemo, which is Wednesdays, went a lot smoother today than last Wednesday, the first time. I might have had more than a bit of a bug then, and maybe that's what made last time difficult. Or, perhaps it was the hurricane that devastated Puerto Rico, as the infusion bags used for one of my meds is made there and nowhere else, so I was given the pill version which is perhaps not as effective.
That the President, for whom I have little regard under the best of circumstances, seemingly cares so little for Puerto Rico offends me deeply, but now it’s as if he wants to kill me. Who knows? That might even be true, either him or Vlad (the Impale ) Putin, his Handler, but then again the latter, as opposed to the Impeachable Offense in the Oval Office, doesn't deny his critics important therapies, instead he seemingly kills them with nuclear isotopes. In any event, they are both fierce enemies of Liberal Democracy (aka Western Civilization, something the Korporate Khristian Konfederacy has been plotting to overthrow for at least half a century now) whereas I am one of the Defenders of the Republic, or so says the ACLU, and they would know since they have higher IQ’s and agree with me. More or less. So maybe they’re in this together, the two of them. Putin and Trump that is; not the ACLU. Who knows? That also might even be true.
Chemo Brain and Chemo Rants notwithstanding (and already I can attest that there is such a thing as “Chemo Brain” and my passage above established the existence of “Chemo Rants”, at least in my case), the real test will be tonight to see if I can sleep soundly. I have been waking up several times a night, more times than previously, for no apparent reason, but I just lie there and eventually I get a little sleep anyway. Or maybe it’s just the steroids. Or maybe my brain is trying to kill me. We’ll see. More to follow.
Yesterday was chemo treatment # 3 of 6, and today's radiation treatment was #12 of 28, so I am, more or less, halfway through this. Before chemo yesterday, Betty and I (and she's with me every step of the way!) met with the Oncology Doc, and he said I am doing very well. That's encouraging of course, but he's referring to my tolerating the treatment and not having too many side effects, but this does not address the outcomes, something we won’t know for a while, which is, of course, the crux of the matter. About ten weeks or so after the end of this treatment regiment, they'll do some more testing to see what has/not been accomplished and then, if necessary (and it is necessary more often than not), determine the next steps. Again, surgery is out for now anyway, and more radiation is off the table, too, as 28 sessions is the max. There are more chemo options, and we'll cross that bridge when we come to it, if necessary.
I'm managing my expectations and pacing myself while doing what I can to live my normal life. For example, in addition to still working, I have gone back to the gym three times a week, but only doing lower body and that low and slow. I need to be mindful that the port in my upper chest has tubing into the carotid artery in my neck, before doing any upper body workouts. Again, I'm doing everything I can to have a happy outcome and leaving the actual results to Divine Providence.
I am still impressed with the team approach at Mercy here in STL, but there are so many links in the chain that weak ones stand out, especially when there is so much excellence elsewhere. One of the young women in the lab (I have blood work done weekly) yesterday called me "Dear", so I called her "Sweetheart", which she didn't much care for, but maybe she'll think twice before condescending. Sure, likely there are many of her patients who might welcome such informal address, but Baby Cakes, I am not one of them.
Except for the time that Betty and I climbed Mt. Kilimanjaro, where altitude diminished my appetite, no one has ever told me that I should eat more. Until now. Now, thanks to cancer treatment, I am officially on a High Protein/High-Calorie diet, after having lost ten pounds in only a couple of weeks. I can swallow with relative ease, as these things go, so that's not the problem, but I'm hardly ever actually hungry. After having been introduced to "Boost" which does taste like a milkshake, more or less, my appetite has returned, at least to some extent.
As of yesterday, I have received four of the six chemo treatments and as of this morning, 17 of the 28 scheduled radiation treatments. My Oncology Doc says I am doing well, which is, of course, good news, but again he’s referring to tolerating treatment and not the actual outcome of it. This is indeed a grind, as we have been warned it would be, and I am so glad, for while today I have more energy than in a while, this does wear you out. I typically take an afternoon nap, if possible, even if only for a few minutes at my desk here at work (I am “officially” on break during that time) and typically go to bed around 7/8 p.m. and frankly, sometimes, even before then.
Both Betty and I think it’s important for couples to go to bed together, but that’s way too early for her (under other circumstances it would be too early for me, too!), so she tucks me in and then joins me a little later. I’m still up at 5:00 a.m., though, to begin my day and have kept up with my daily activities, including light workouts at the gym three days a week, but all lower limb and all low and slow. After this course of treatment is done (11/10), I’ll have some more tests in mid-January, and then, because this one is difficult to treat, the fun, in whatever form that presents itself, will likely begin again.
Betty and I met yesterday with the Oncology Doc who is managing the various elements of my chemo (his bailiwick) and radiation and everything else involved. Since I have been coughing a lot (apparently there is such a thing as Radiation Cough), he ordered a chest x-ray, I thought to doublecheck to make certain I did not have pneumonia, which I’ve had, but really to make certain that esophageal cancer had not spread to my lungs; it had not, so that news is good, and no pneumonia either, which is also good. Just a cancer cough! Having had 5 of 6 prescribed chemo treatments, and 22 of the 28 prescribed radiation treatments, I am at once in the home stretch and also heading into the very toughest part of this regiment, as the last week or so can be especially tough, and for several weeks after that even. Once again, I am so very grateful that we had been warned that this would be a grind. Sort of like in a marathon (of which I have run/walked 5 to Betty’s 47, but who’s counting, right?!?) when you hit the wall. It’s Left/Right/Left until you grind through those last several miles.
Apparently, the chemo is meant to boost the effects of radiation, which does a number of the sternum, a prime location for the production of blood cells, and my WBC, RBC and platelet counts are all low, and thus I got a WBC booster shot this morning with another one scheduled for tomorrow. Just before the Infusion Nurse pushed in the needle, she said this would make my bones ache. Ah, something else to look forward to!!!
Today, I was discharged by the Radiation Oncology Doc, who I see on Mondays, even though I still have four more treatments scheduled. I have a follow-up appointment in two weeks, just to make certain that my body has begun to adjust from the 28 radiation treatments. My last chemo is this Wednesday, and already I’ve been told by that oncologist that I’ll see him in a couple of months for more tests and then if indicated, next steps.
Indeed, that this was discovered so early, would suggest a happy outcome, but not only were we warned that treatment is a grind, we were also warned that far more often than not, a second-round is indicated, because this cancer, adeno cancer of the esophagus, is especially difficult to treat. (My urologist was looking for something that wasn't there, but noticed something suspicious elsewhere; I was able to get an endoscopy done within a few days, as I already had a routine colonoscopy scheduled the next week, which also was benign, thus shaving off a month or so.)
In referring to the American Cancer Society’s list of common chemo side effects, of which there are 18, I’ve experienced the vast majority of them, the latest being held captive by my digestive system over the weekend, a time when I wore Depends and dark pants. It’s a relief to see diarrhea listed as a common side-effect. It’s also a relief to know that the worst of this can be ameliorated with common over-the-counter medication and to realize that “tourista” is just another stop along the Great Cancer Adventure trail.
I do not have much appetite (another side effect) and haven't had much for a couple of weeks or so. Fortunately, I do not mind at all the taste of Boost and consume a couple of these a day. I have no taste for vegetables, fruit, sweets, coffee (which is astounding, for as much as I enjoy coffee!) or much of anything else, but I’m still interested in meat, such as bacon and pork steaks. Also, I wonder if I’m still feeling the lingering effects of some sort of bug that doesn't
My last chemo was Wednesday, at least for this round, and my last radiation is scheduled for tomorrow, and, no matter what's next, radiation has run its course, which is OK with me. The Infusion Center at Mercy has this bell that we’re encouraged to ring, once chemo is completed, and I rang it then. All the nurses came around and gave us, Betty and me, a round of applause, which was a nice gesture not only for our benefit but also for the benefit of those in chairs, wondering what the future had in store for them. I thought about not doing this, because it’s loud, and many of the other cancer patients were sleeping, but my nurse encouraged me to ring the bell. I was back there today and am scheduled for tomorrow as well for a blood cell booster shot, but was told today that I did not cheat because chemo is indeed over.
A couple of weird things….
One, at each of the six chemo sessions in the Infusion Lab Treatment Bays there were patients wrapped in blankets, some of whom were women with shaven heads, who, leaning against the pale walls, seemed about to be absorbed by them. I'm not that sick, at least not now, but this could be my future, too, I know.
And also, this past Tuesday evening, I received a telephone call from the office of the GI Doc, who did the endoscopy, saying that my biopsy results came back negative. For a second, I had a Twilight Zone moment but then realized that this was a courtesy call, coming a bit late perhaps, to let me know that the colonoscopy results, and not the endoscopy results, were negative, something I had already known, but appreciated the call nevertheless. Still, more than a little weird.
Of the people to whom I am most closely related by blood (two parents, four grandparents, four siblings), I would not have said that cancer runs in my family. This is not to discount my maternal grandmother, who developed breast cancer late in life, nor one of my sisters who's had three brushes with cancer, but instead to note, by way of contrast, that what runs in my family is heart disease. My maternal grandfather succumbed to that, as did my father among many other ailments. My mother has heart disease of one sort or another, and so does one of my brothers, and I have high blood pressure, which fortunately is under control through diet, exercise, and medication. All of which is to say, that when asked "does cancer run in your family?" I answered no, with the provisos noted above. My children, however, will have a different response. This is not what I had most intended to pass along to them as my legacy, but there it is.
I look forward to my appetite and energy level returning which cannot come too soon for me. My mouth and throat seem lined with dust, a common sensation I'm told from the radiation, and very little is appetizing. Boost is not only something I can tolerate, but it’s also actually palatable. A friend brought us dinner last night (Bison burgers, mashed potatoes, and some home-made healthy salad), none of which was on my plate for long, so there does seem to be a light at the end of this tunnel. I also hope to return to the gym in a week or so, something I've missed as well, and that's not like me either. I am coming back, though, as I seem to feel my strength returning. All of this leads me to wonder if indeed I didn't have some sort of bug just when treatment began, as I am in the very toughest stretch, but feel better, for minutes and sometimes hours at a time, than I have for some good while. Or maybe it's nothing more than seeing the finish line, for this particular race anyway.
Next steps, after tomorrow, are 1.) Labs and Oncology Doc on Friday the 17th, to see if an additional blood cell booster is indicated and also to schedule testing in two months to ascertain the effectiveness of the treatment to date, and 2.) radiation oncologist follow up on Wednesday the 22nd, to make certain I am swallowing OK, just in case; both radiation and chemo are still working after treatment ends, which means that side effects are still possible for a while yet, too. Oh goodie!
This has been a difficult journey to date, and it's not over yet, as there may need to be a second round of something, but we'll know more in a couple of months, after that testing. In the meantime, I need to make arrangements to have my port flushed every four-six weeks, to make certain it works since the plan is to keep that in my chest and neck for at least two years. Coming full circle, the Oncology Doc said that if I make the two-year mark, the prognosis is good for five or more, and that’s the short-term goal for now. Two-years. Better than the alternative, which again is 6-12 months. This uncertainty might change some retirement plans, such as travel with Betty and the kids, but I think I can adjust. Priorities change.
As noted previously, I finished 28 radiation sessions on Friday 11/10 and six chemo sessions (this round, anyway) on Wednesday 11/8, and have now had two weeks in which to recover, which frankly has been the most difficult part; again, Betty and I are so very grateful that we were warned this is a grind and that treatment continues to wear even after it’s completed.
Much of these last two weeks have been spent in managing side effects, of which, according to the American Cancer Society, there are 18 for chemo, and I've had the vast majority of them. Spent a day or so in the hospital last week, for example, but apparently, I am moving forward at least to some considerable extent, although I'm incredibly weak, having lost some twenty pounds. My appetite is returning, which is a good sign, and my digestive system is more or less back to where it had been before all this started.
Even when I am back to my old self, all that means is that I survived treatment. It does not mean the treatment worked. Having been warned that the kind of cancer I have is difficult to treat, I'm fully expecting that there will be a second round of something, but that's to be determined in mid-January after more testing. Outcomes are out of my hand, but means is up to me, and I must do my part to get as strong as possible for the next round, should there be one.
My great good thanks to my immediate family, namely Betty of course, who has been with me every step of the way; Elizabeth, Sam & Ramona; and Peter & Nicole, along with brother-in-law Mike O'Dea, who's kept in close touch and who invited us for Thanksgiving Breakfast at Uncle Bill's Pancake House & Diner, and many, many others.
In a couple of weeks or so, Betty and I are headed to Houston for a Cast/Crew showing of “Illusions of Cyn”, made from one of my spec, feature scripts. There, we’ll meet up with Elizabeth, Peter, and our friend Steve, along with the cast of the film and many of those working on it, whom Betty and I had met before. These are all independent film people, mostly from Houston, and the director seems happy with the results, so I am looking forward to this.
Life goes on. The adventure continues.
Regarding the 11-27 reference to hospitalization….
I didn't know it possible to have both diarrhea and constipation at the same time, and while it is not (water builds up behind constipation), the effect is the same. I was uncomfortable of course but more concerned than I might have been otherwise, since a decade earlier I had had an impacted bowel, a temporary colonoscopy, three surgeries because of all this, and a foot less large intestine than I’d had previously.
I knew from that experience and others I desperately needed to drink electrolyte, but could not tolerate even dilute Gatorade due to the scarring done by radiation. So, after speaking with the Oncologist's office, I went to the Emergency Room. They tried some medical treatments I could tolerate, but none of that worked, so the Family Medicine Resident on-call removed the impacted bowel by hand, bit by bit. She seemed to think this went with the territory, that this was just another day at the office and, frankly, not her first rodeo, but I thought this a waste of her training, although a welcome source of relief. And also embarrassed the problem was addressed in the fashion it was. All too soon, however, there was to be another medical problem.
Been a busy week. We left on Monday for Houston for a Cast & Crew showing of “Illusions of Cyn”, made from one of my scripts; without a doubt the very best truly independent film I’ve seen. What a talented group of people. So fortunate to have been a part of this. These are all independent film people. Robert Redford is an independent film person, but no one involved in this project is Robert Redford, including me, but all of them have serious film credits.
Unfortunately, however, on the way home Wednesday, somehow I popped my artificial hip out of joint and spent a couple of days in the hospital there in Houston. Very discouraged to be certain, perhaps especially with this pesky cancer thing, but we are home, I’m watching the English Premier League with Mike O’Dea, Betty’s brother, and I’m seeing my orthopedic surgeon on Monday. Almost certainly I'll miss some work at the very busiest time when I'm trying to wind down to retirement.
In Houston, I was fitted for a brace that went over my hips and down my right leg and made my way with a walker. At the airport coming home, I was in a wheelchair and one of the TSA Agents wanted to refuse me entry, but his supervisor who had coincidentally just had training about this very same situation, so perhaps it's not all that uncommon after all, took over and I breezed through. SWA was amazingly accommodating and not just because they had to be by federal law, but they were required to be by federal law to be accommodating, e.g., seat me first, at least in my case.
The first evening at home, after Betty got me some oversized pants, Betty and I met her brother Mike for dinner and when I went to the toilet afterward, plodding along on my walker, I felt what turned out to be little screws in the hip brace come out and fall down the inside of my pants leg and into my shoes. Good thing for that, or otherwise these screws being so small, I might not ever have found them. The three of us went home and they tried to put the screws back into place, while I lay supine and still, as I was not supposed to move much without the brace. (The ER Doc at that hospital in Houston failed twice to pop in my hip – and following protocol, tried to discharge me, but I refused to go – so it was left to the Ortho Doc on call to admit me and try again, as he had a better bag of tricks. Even so, it took three tries, which likely has taken its toll.)
I started off sleeping in the guest bedroom (my doing) as I need to sleep on my back because of the hip injury. I’ve tried to position myself to where I can sleep that way, but so far it’s only been an hour and a half at most at any one time, so I am exhausted. I have a productive cough (an oxymoron if ever there was one!) in that I am coughing up all manner of yucky (a medical term!) stuff. I have this from time to time and have been tested for TB, cancer, pneumonia and pretty much everything else with no resolution (my allergist thinks it might even be allergies and/or “merely” sinus drainage from chronic sinusitis), but in any event, so that she could sleep, Betty’s in one bedroom and I am in another. Or at least we tried that for a while before she moved in with me. Intimacy is important for couples of course, but so is nearness and touching. I think I might have found a sweet spot for my head and neck that might allow for a little more deep sleep for both of us. It’s worked for a few nights now, so I am hopeful.
Having returned from seeing the STL orthopedic surgeon, who was able to have his tech guy insert those little screws where they needed to be, I’m going to be doing 4-6 weeks of PT to build up my hip, resulting from the artificial hip dislocation. He desperately wants to avoid surgery. Perhaps I was not sufficiently careful, which resulted in the injury, but the OS Doc said that there are studies that suggest chemo might have exacerbated matters. I do need to be ready for the next round of chemo, so I’ll work hard on the PT. The Adventure continues.
Essentially all my chores and other matters have fallen on Betty, so if you wish to help me/us, then ask her what assistance she needs. I cannot imagine doing this alone. She truly is The Champ.
Had the first of the PT sessions on the 21st, but unfortunately due the holidays, etc. the second of these will not be until Tuesday 1/2, but the pace rolls on from there.
I'm on a walker, protecting my hip, and in a hip brace, as PT has to do the deal since surgery is not a good option due to recent chemo and a possible second round in mid-January. The PT we're scheduled to see not only knows Ortho but also has had Oncology training as well, so we're covering both bases, but until that begins again I'm not certain how much I can do, but I do have some exercises and I am killing them!
With my hip in a cast, it wasn’t practical for me to travel this Christmas, so Elizabeth (daughter), Peter (son) & Ramona (granddaughter) were with Betty and me over the Holidays. It was great being with them. What a Christmas gift! Only sorry that Sam (son-in-law) and Nicole (daughter-in-law) couldn’t be here too.
In reflecting on the Great Cancer Adventure to date, indeed it’s been a rough road as we were warned it would be. For example, I’ve had every one of known side effects of chemotherapy and radiation, including (seemingly) diarrhea and constipation at the same time, so I didn’t have a “bug” when beginning treatment as I thought; was hospitalized for impacted bowel, after having serious complication from this a few years earlier; completely lost my appetite and 35 pounds; got three tattoos when I never wanted one; stopped going to the gym, even for light exercise, due to lack of energy; learned that there is such a thing as "Chemo Brain"; and dislocated my artificial hip. But I am still here and still determined to see this all the way through, no matter what happens.