Chapter Nine - The Light in Darkness (March 2020)
April 15, 2020- 17 min read
The Great Cancer Adventure
Chapter Nine - The Light in Darkness (March 2020)
Yesterday, our granddaughter turned six, and today her mother turned 40. I slept OK night before last, but not so well last night, being awake from just after midnight on through the morning. Perhaps I was thinking about the time Elizabeth was born and how small and fragile she looked just out of the womb. More likely, however, the decaffeinated green tea I drank yesterday for the first time in forever was not as decaffeinated as advertised. There’s a lesson there someplace, but I am too sleep deprived to search for it.
We’re about to leave for CTCA and the next round of chemo, etc., which was to have been followed by a carefully orchestrated effort to see The Champ off on her Great Nile River Cruise Adventure, aka her “float trip.” We were scheduled to return on Thursday evening or Friday afternoon (dependent on whether we spent the night there at Zion), and, having arranged my appointments for early in the day, we expected to have her unplug me from the chemo early Saturday morning in time for her to catch an airplane for Chicago early that afternoon, overnight at O’Hare and then fly out Sunday morning for Cairo and other exotic points, in the company of niece Katie. But the coronavirus pandemic (and it is one, even if it has not been “officially” labelled a pandemic at this point) resulted in the Egyptian government cancelling all such Nile River cruises. She and Katie are disappointed that they will not be making this trip, at least not for a while yet, and I’m disappointed The Champ wasn’t able to get away from the Sick Guy for a while. Those two women, however, are looking into alternatives, so they may be going somewhere this month or next after all. (Flash: Katie was able to find some tours in/around Cairo and also some tours in/around Ankara and other points in that part of the world, so they are going after all! Women, perhaps especially American women, are simply fascinating, amazing creatures!)
Long before The Champ’s “float trip” got cancelled and she and niece, Katie, made alternative plans, I’d mentioned I might like to go to Le Mans one more time before I head for the Great Pit Stop in the Sky.
My father was career Air Force, a pilot, and he was stationed in France from 1962-1965, a time when I attended a high school for military dependents near Dreux AF Base in the Eure et Loire. My folks exposed us to many things French, and not just berets, baguettes and La Marseillaise. For example, they bought an old, black Citroen, the gangster car, which we used for trips back and forth to Paris to eat snails in French restaurants, to visit the Louvre, and generally interfere with my social development by keeping me away from the Teen Club many Saturdays.
We also went to Le Mans a couple of times. Best I can recollect (and I am befuddled more often than not by Chemo Brain) once in 1964 for the entire 24 Hours of Le Mans and also in 1965 for the time trials prior to the Tour. In ’64, I slept for a couple of hours on a bale of hay snuggled right up against the flimsy barrier defining the track where, only about three meters away from where I slumbered, these incredible sleek, deep throated machines roared by at speeds approaching 200 miles an hour. That was cool. Also cool was the time in ’65 when, by my distracting a machine-gun-toting-gendarme with some crude gestures, my father and a friend snuck into the pits and met Carroll Shelby. When the coast was sufficiently clear for me to sneak into the pits, too, I was introduced to Mr. Shelby as if he were a new next-door neighbor they’d just met on Base Housing.
I’d been ruminating for over a year about going a third time, this time to track down that bale of hay or one of its descendants, even knowing full well that some moments cannot be recaptured. Being mindful of the pros and cons, including the cost of flying over there for just a couple of days, on balance I decided against. But the idea persisted, for better or for worse, and so we’re going. But this time, we’re staying overnight in a four-star hotel in Tours as I was unable to convince The Champ to snuggle with me on silage positioned within arms-length of these incredible machine, roaring by at incredible speeds. I just couldn’t make her see that sleep could be a life-affirming, death-defying act. Or maybe no one can fully subscribe to another’s longing to recapture fleeting moments of youth. They, too, zoom by faster than we could have imagined, but they don’t come round again.
So what closed the deal for me? Knowing that I am on borrowed time was certainly a motivation, along with recognizing I might have only one more international trip left in me, so better to take that trip sooner rather than later, as my health will almost certainly only go downhill over time from here. Also, in addition to re-visiting Le Mans I wanted to pay my respects to Paris, where I’ve booked us a hotel in Montparnasse for a couple of days after the race. I love Paris. I love France. I even love the French. If I can go, I have to go say goodbye.
Back from our most recent adventures at CTCA in Zion, IL an hour or so north of Chicago….
Initially, I was to see Dr. V, the GI Guy, in three weeks for another endoscopy and cryotherapy, but having every day even more trouble swallowing and keeping things down, we called ahead to see him during this most recent visit. Things have been digressing so rapidly in fact that, just before leaving for the drive, I coughed up part of some scar tissue which otherwise would have been digested. Even for me, TMI. We got in early enough on Wednesday to see him before he left for the day.
He first suggested, since he was leaving to go out of town for a long weekend, that we either stay over until Monday or come back one day next week for the procedure, but, after weighing options, we settled on his doing the procedure in two weeks, rather than one or three, with me being on a liquid diet until then. Sure, no meat for me for a fortnight, but I can have all the ice cream I want. Fair trade in the short term. And presumably this will give my esophagus some time to heal in preparation for the next procedure. Seemingly, anyway, a good plan.
This would also fit with the Oncology Doc’s suggestion that we begin a new chemo and which would be given every two weeks rather than every three, as it’s apparent I need more than I’m getting or otherwise the tumor inside the esophagus wouldn’t be as obstructive as it has become in such a relatively short period. And, just to finish up with Dr. V., if this next endo/cryo doesn’t do the trick, then he wants to do a stent, which affords more relief but also comes with its own set of problems. Oh, goodie!
The next day only a couple of hours after a Port Blood Draw (since most everyone is from out of town, CTCA provides lab results quickly, and often these results are posted to my Patient Portal even before we see anyone from the oncology team), we met with the Oncology NP (Nurse Practitioner) rather than the Oncology Doc, with whom I only meet face-to-face when there’s a scan, although she does review my information, and in fact was briefly consulted about the next matter. We recall her, the Oncology Doc, telling us last time that she wanted not only to increase the frequency of infusions from once every three weeks to once every two weeks, but also to introduce another component which would provide much of the same function as the Oxiloplatin, which was removed due to side effects, so we’d get the benefit of a two-step increase in treatment. We were told, however, that I’d get the same cocktail, 5FU, as has been the case for the past several months. Not what we recalled discussing, but no worries.
We had a mid-afternoon appointment with the CTCA Cardiologist, who was called in months and months ago when I woke from a procedure to AFib and was hospitalized for in-patient, 23.5 hour observation. Following this, and at the suggestion of the CTCA Heart Guy, I saw a local cardiologist in STL, had an EKG, and listened to him tell me this episode was possibly the result of a side effect of anesthesia, something I’m still disappointed that no one at CTCA mentioned. In any event the CTCA Heart Guy had prescribed a beta blocker (I cannot have anything else, as cryotherapy causes scarring and bleeding), and we met, really, just to check that box. I must say in speaking to him that he may know his Shakespeare better than I, but he doesn’t know his Bible, as he thought the phrase “A man’s years are three-score and ten”, came from Billy the Scribbler when it actually came from David the Giant Killer and Psalmist. I didn’t mention this, however, as he’s fun to joke around with. The CTCA Heart Guy, I mean. I have not had the privilege of meeting either of the two other gentlemen.
That might change however, sooner rather than later, things being where they are just now. I have no interest in meeting Sir William, although I am convinced that he did in fact exist and is the author of all that he is credited (by some, anyway) with producing and perhaps even more. I’d be more interested in meeting David as I’d like to ask him if he really killed a lion with his bare hands (and if this was known outside his hut, then why did his countrymen think him “a mere boy” when killing lions without a weapon of any sort other than those he was born with is clearly not child’s play), actually killed Goliath with a rock, and what was he thinking, or thinking with, when he sent Uriah the Hittite to a certain death so that he (David) could take Bathsheba, Uriah’s wife, (now his widow), as his own? Did he not have access to enough women, being king, was he bored with soloing on his recorder, or did he want to see how far he could push the parchment?
Even though the appointment with the CTCA Heart Guy, Dr. C., had us out of the building mid-afternoon, we left immediately (The Champ had already packed us up and check us out of Guest Quarters) for home and got there about 8:30 pm so we didn’t have to stay an extra day, as originally planned. Small victories add up.
The Champ is sleeping in, but I’ve been wide awake since the wee hours of the morning, as one of the chemo cocktail components I’m getting now is a bag full of Vitamin B’s, which have an energizing effect even with the Benadryl I’m also given. That’ll wear off in another 36-48 hours, at which time, I slide into a post chemo trough lasting a couple of days, after which I’ll wonder what all the fatigue and lethargy was all about? Just as, now that we’re on a two-week cycle again, the fun begins all over again.
Someone whom I respect and know through Facebook, wants to pick my brain about how she might be even more useful in helping cancer patient navigate the path and pitfalls of cancer treatment. While I don’t have a “Top Ten Things to Do” (yet?!?), if I had one, the first listing would be “Select the Right Partner.” I did.
One the symptoms of the corona virus is a sore throat, something I might have or this could, instead, be the result of problems with swallowing due to cancer. I do have a cough, and it’s a dry one, though I do produce this disgusting phlegm from my esophagus, but this is the same cough I’ve had for years and years, the result apparently of a common fungal infection in the lungs of farmers and others in the Midwest who get soil under their fingernails. Like gardeners, something I used to be. I’ve no fever, but that symptom comes a little later than some others, I understand, so perhaps that’s in my future. I’m feeling the effect of a chemo slump and am fatigue from that, as usual at this point in the treatment cycle, so I can’t tell if I have “flu like symptoms” or “chemo like symptoms”.
The Champ and the niece did not leave for their trip after all, so it’s been cancelled twice. The latter woke up with the flu the morning before they were to have travelled, so they wisely determined then to pull the plug. At a time of a world-wide pandemic, with things changing daily, now’s not the time to take any health chances.
Since Betty’s not going out of town for two weeks and since I’m losing weight from this liquid diet I’m on due to blockage in my esophagus – despite getting sufficient calories most days to keep my weight stable – I’ve got a call into CTCA to see if we might come this week for another endoscopy and cryotherapy after all rather than a week from Thursday. I have a raspy voice and a bit of a sore throat, both new or newish; a cough and constant sinus drainage, neither of which is new; and no fever or at least no fever yet. I’ve felt pretty wiped out for the past couple of days, but that’s how I typically feel at this point in the chemo treatment cycle, and I’m beginning to feel much better and stronger than I did a couple of days ago, something that’s also a typical response, so I called my doctor (well, actually the family medicine clinic I use), and was told that I likely did not have coronavirus, so we could jump into the car with just a moment’s notice. And, having been given the go-ahead by the GI Doc, we did just that.
Things are dramatically different at CTCA than they were even as recently as the middle of last week. The entrance from the parking garage is locked, leaving only the entrance by the front door, where, just inside, a couple of guards go over the protocols. They too were interested in my cough, but having no fever and being given the go-ahead by my primary, they passed us through, and we’re expecting for me to have the endo and cryo tomorrow. Also, the cafeteria no longer does any short orders, as they used to do, or serves any hot meals, so essentially without exception the meals are those already prepared, like lukewarm cheeseburgers and small containers of soup, none of which I can eat anyway. They still prepare smoothies, however, so I indulged. Had a couple of tasty milkshakes.
I had the endo and a little cryo, along with a little stretching of the throat, and I’m coming back to the GI Clinic while at CTCA for the next chemo, to get, probably, a temporary(?) feeding tube. I am displeased that my condition seems to have gone downhill so quickly that I require this all of a sudden, but again this could be a temporary thing, and I’m hoping for the best. Dr. V., however, did agree with me that this is not good news. So there it is.
I’m always concerned with infection, being ill, but especially now with the corona virus and the disruption it has afforded everything and everyone. Still no symptoms for me or The Champ so we have dodged this thing so far. It does feel weird, however, and I do feel a little guilty, that in a time like this, when a pandemic is raging by all accounts, I’m more focused on my own illness and what it might mean to me and mine, than on what’s affecting the broader world outside mine.
Feeling a little better day by day I find my appetite had returned, but still eating only liquids, a big meal for me is two bowls of soup. I continue to count my calories to make certain I get enough to heal as best I can. Now’s not the time to be a burden, something I never want to be.
Even when getting all of my calories, including those from dark chocolate (apparently, it does not matter from whence calories come), I’m still losing weight daily, albeit only a little at a time. My vanity likes being a little thinner, but this almost certainly means that the cancer is roaring, not something that’s good. I may not be able to keep my weight up on a liquid diet alone. I would even forego mashed potatoes and ice cream, my lunch today, for a hamburger. At least I have my appetite.
All around us, the pandemic roars, leaving its mark on everything. Le Mans, for example, has been postponed and re-scheduled for mid-September, so as of now we’re still going, but that’s subject to change as needed. The Champ has encouraged the kids to come visit sooner rather than later, but we don’t have a date yet, as they need to coordinate schedules, not only for themselves, but their SOs and the grandchild. Most everyone these days is working from home or not working at all, so that affords some flexibility, but still some schedules have more elasticity than others. While I don’t necessarily feel the end is nigh, the latest news about my swallowing is a stark reminder than survival rates for those with my kind of cancer, five years after diagnosis, is in the low single digits, even when receiving good care, as I am getting at CTCA. I was diagnosed just two and a half years ago so that would suggest that my expiration date is, likely, sometime between now and September 2022.
Betty ordered me this pricey blender, some super-duper model which can liquefy pretty much anything and, as she put it, could probably mix concrete. It came yesterday, so, after reading all the instruction and disclaimers (which seemed to think what I had in mine might be a bad idea), I bought a turkey burger, cut it up into small pieces, and blended it with water and some different kinds of sauces I had in the fridge. This produced something delicious approaching the consistency of hummus. I can hardly wait to use it on some salad greens for lunch today.
Just heard from the CTCA GI Department, and my guy, Dr. V., seems to think I will likely, or at least possibly, be unable to swallow even as little as I can for very much longer, so he wants to put in the feeding tube when we are there next at CTCA. This is most unexpected and unwelcome news, as I thought this was a distinct possibility and soon but not something that would happen so suddenly. I’ve spent the last day or so wishing somehow this would just go away, but I’m going along with this program of course, to a large extent because I have no choice, really, as this is just what is next in The Great Cancer Adventure, and also because I made a decision not to look away from whatever comes into view.
Fortunately for my peace of mind, I have found something that infuriates me and, consequently, distracts me from otherwise spending too much time dwelling on the upcoming procedure and the various adjustments required to live with it to best effect. This diversion is my schedule at CTCA this next time. There are obvious errors on it (for example, I am scheduled to register for this visit on two different days), but these errors, which have become more and more common these last few weeks, would suggest items are merely added on by departments and that there is no one at CTCA looking at my schedule, or anyone’s for that matter, from a Big Picture perspective to make certain nothing is omitted and everything gets accomplished efficiently and effectively. Certainly, I need to be involved in what happens to me, and I do insist on having the final say in any health care matters, but I shouldn’t have to double check this to make certain it is correct. I have the energy to do this (and actually look forward to speaking with whomever on this!), but where might I be if I didn’t or if I were too ill to be as thorough as I am well enough to be? Also, while I have a good idea of what’s necessary for me, what if I don’t recognize a redundancy or an omission? Where might this leave me or another patient? At the very least, I will need to tie up a scheduler to go over the details of my next visit.
I was able to reach a scheduler and made that change, no problem, so that particular duplication has been addressed. I’m still troubled that the patient (in this instance, me) has to be the one looking at this, but perhaps, realistically, there is no alternative. Other than a loved one, if/when I’m too ill to be the one primarily responsible.
We are back from CTCA where the Great Cancer Adventure continues.
Short version is that, having been there three times in three weeks, I am now the proud owner of a feeding tube, which is not good news of course, although I seem to have handled the procedure well enough, followed by chemo which is pumping even now as I write so I am crashing by the minute but expect to feel my old self again in a few days, just before we head back up north again for chemo, as we’re on the two week cycle now.
The feeding tube is not necessarily permanent, but the way my cancer is closing up my esophagus, likely it will be. I do not need it now, as I can drink liquids and some semi-solids (Betty bought me this dynamite mixer that could probably handle concrete, for all your kitchen concrete needs!), but the GI doc seems to think that he has done all he can for me with stretching and cryotherapy. Better to do the feeding tube now, even though I do not need it now, than later, as fast as things have been moving, when I might need it and don’t have it. Of course all the scar tissue in my esophagus might conveniently pass through my system and I could go back to eating, more or less, whatever I want, which is a nice idea, but we’ll see.
I’ve been realistic, I think, all along about my survival. No shelf life yet, but after 2.5 years, I am mindful that the survival rate for those who live 5 years after initial diagnosis is low single digits. I continue to have no complaints. I am not, for example, like a friend of ours who is 41 with a small child and leukemia; his work is not done, though mine mostly is. I’ve found a wonderful partner, my grown children are marvelous people as are their spouses, our granddaughter is a joy, and I have work that matters, the GCA. This pesky corona virus could get me before the cancer does, and it has greatly diminished our retirement, but that will come back, eventually. I’m living my retirement, more or less, as I imagined and might have a couple of years more. No complaints.
Earlier this month,The Typescriptlet me know they would publish one of my end-of-life poems, “The Light in Darkness” which is as follows:
The Light in Darkness
Even when merely resting just inside the Darkness,
So near the Light I could reach out a hand and touch it,
The voice of the Deceiver, the Liar who dwells within me,
Brimming with confidence and full of conviction, whispers,
First, “You are lost and undone.”
Then, “You cannot move on from this.”
And finally, “It’s time to sleep abidingly.”
Overwhelmed and confused by doubt and misgiving,
Sometimes so broken and beaten down I can scarcely stand,
His voice, undistorted, sounds so genuine, so real,
Even though I know there is nothing and no one there,
And everything I hear him say is untrue.
Instead, these words are only the articulated trepidations
I am too frightened (and proud) to call fears.
Standing and moving into radiance,
I no more know there is no Great Beyond
Than he does there is one,
For none have returned from that crossing.
The wise, indeed perhaps the brave,
(And, yes, I aspire to be one of them,
Though far too often I fall far too short)
Find their way not despite their disquietude
But guided by its reflections.