Chapter Seven - Leaving the Party (January 2020)
March 08, 2020- 17 min read
The Great Cancer Adventure
Chapter Seven - Leaving the Party (January 2020)
We've been talking for some good while now, The Champ and I, about taking an international trip to a destination of her choice, as a sort of a gesture of appreciation for everything she's been doing and, frankly, an acknowledgment that I'm almost certainly on a downhill slide, even if at a gentle slope (or so we hope!), so there is yet more to come, with almost surely much of that burden falling on her. We've been to a couple of destinations within the past few years that fit more closely her interest than mine, and I've enjoyed them much more than I thought I might, so whatever she selects would almost certainly work for me. Besides, having been to a couple of dozen countries and having lived outside of the US on two separate occasions for a total of five years, there was no place I wanted to go that I haven't been, so I'm not giving up anything.
She’d previously expressed an interest in taking a cruise down the Nile and so we started looking into options. Having a referral from a friend of ours who’d just returned from making much the same journey we have in mind, we called the travel agency he recommended and learned we could go sooner, rather than later, and at a cost that made sense, so we asked him to put a no-obligation hold on a trip in March.
That night, I had a terrible dream about something I was confident would not happen, so I began to wonder what underlying fear might have been the cause of this trepidation. And soon concluded that, no matter how well I might be doing with this pesky cancer business, I ought not to go on such a trip because of my previously-dislocated artificial hip. Having already had one episode brought about, at least to some extent, by the number chemo does on connective tissue, I had no business going on a "float trip" down the Nile. And so I started thinking how I might approach this with Betty, expecting that she would be disappointed and would refuse to go without me when it came to me that not only would I propose whomever she selected would go as stand-in as a travel companion, but also I'd recommend a relative she's known forever and with whom, coincidentally, we'd traveled internationally to good effect one before.
The Babe had a race that morning and I had coffee to drink with friends, and so it was mid-morning when we got together. The conversation transpired much as I thought it might, with some variations. She agreed "we" had no business going (when I'd said "I"); adamantly refused to go without me under any circumstances due to my illness (when my reservation was about my hip); and re-considered even more quickly than I thought she might when I suggested she go with the niece we had spent some time traveling with previously. So, while I've been the one who's planned all of our previous international trips (and we've had some great ones), I'm out of the loop on this one. Already, after less than 36 hours after our initial conversation with the travel agent, she and the niece are working on this and have identified several alternatives. They’ll have a great trip. I want to hear all about it when they get home.
In the meantime we leave for CTCA soon, where I am scheduled to have another infusion of 5FU our first day there and another endoscopy on our second, likely with another cryotherapy, as I am having more and more trouble swallowing. The fun never stops.
The first evening during our last trip to CTCA north of Chicago in Zion, IL, began with checking into the guest quarters just off the medical campus and going to the cafeteria for a healthy if rather a bland dinner. This was followed by The Babe's piano gig at the baby grand on the hospital's mezzanine, where she gets favorable and flattering comments when she's just recently moved up from Beginner to Intermediate; she aspires to have Billy Joel or perhaps Santana open for her – we all have goals, but "No autographs, please" she says. She has a new teacher these days who seems to know how to get the best out of her, and her playing has dramatically improved. Fun to hear her improvement and hear all the flattering and kind words of the half dozen or so patients and family members who heard her perform. It's never a large crowd, and since many of those nearby are ill, she always asks permission to play. Ever classy, is she.
Betty's performance having drawn to a close, just as we were leaving for our room she met a woman who said she had been pronounced “cured" a couple of days earlier and had her port removed. She did not offer any further details and neither of us felt it was any of our business to press her, for, if she wanted to say more, she would have done so, but she didn't, and that's her call. I'm still flabbergasted. I had been told at the beginning of this journey port removal was a theoretical possibility but have never met anyone in either STL or here, who's had this done. Never heard of anyone, even. Wow!
Just before we met with the oncology team the next day, I came across a booklet comparing national survival rates of various treated, metastatic cancers against the survival rates of these same cancers treated at CTCA. The publication acknowledges that there are too many variables for this to be much more than offered "for illustrative purposes" and certainly might have been published because it shows CTCA in a more favorable light than treatment in general across the land. I looked in detail at two of these bar charts, one for breast cancer and one for esophageal cancer, as a relative has just discovered that she had the former and of course I have the latter. At CTCA the survival rates for breast cancer after initial diagnosis are 94 percent after six months, 50 percent after three and a half years, and 36 percent after five years. Not bad, and remission/cure is possible. However (and while this is a sobering thought, it's just another way to express "hard to treat and likes to come back", so it can hardly be described as a surprise), esophageal cancer survival rates are dramatically lower, i.e., at CTCA it's 64 percent for six months (a third are dead in half a year!), 7 percent for three and a half years, and the survival rate goes down to 4 percent for five years. (National survivor rates are slightly lower than those reported at CTCA. I am of course still happy with my treatment there, or I would be going elsewhere, but even so, this is not a plug for them, but instead a realistic comment on my chances.)
Also, noticed in a patient newsletter published periodically, which offers among other things brief blurbs of different articles published or presentations delivered by oncologists and others there at one of CTCA’s five locations (in addition to Zion, north of Chicago, they are in Atlanta, Phoenix, Philadelphia, and Tulsa), there is an end-of-life discussion, described as follows: "Patients with advanced cancers, often deem 'incurable' are faced with the decision whether to continue therapy with the hope of prolonging life or managing symptoms." The doctor, the statement continues, "discusses extending survival with a meaningful quality of life for cancer patients in a recent" article.
Which brings to mind an existential question: what would constitute quitting and what would be a realistic assessment of one’s condition? I am not there yet if ever I get there, but it is something for reflection as, no matter the words of assurance, the effects of cancer treatment in general and in chemotherapy, in particular, are widely considered to be cumulative; even if the downhill slope has some ups and downs, the trend is, overall, lower and lower over time. Again that is the side effects of treatment and not necessarily the outcome of the treatment, but that, too, is a downhill slope, make no mistake. Always good to remember. And good to be reminded occasionally by someone casually met in the hallways there at CTCA, such as the woman Betty met our first day there, that excellent outcomes (miracles?) do indeed happen.
While my labs continue to look good, I do feel a little tired some days, so I got a B-12 shot, following a discussion I had last week with one of the nurses on the Care Management Team. The PA we saw on treatment day said that, if this does the trick, she can order this, including syringes, through my pharmacy. In the Infusion Lab, this was injected into the deltoid muscle, but at home, this would be done subcutaneously. As always, I'll ask for it if it seems to do any good, but will not if it does not. I'll give it a few days as I fully expect to have little energy over the next couple of days.
The treatment itself in the Infusion Lab went smoothly and so I was hooked up on a pump for 46 hours, after which, at home, The Champ unhooks me. She's become even more proficient at this – must be all the piano practice! – but even so, we both wish this could be accomplished with me out of the room. But since the needle is inserted into the port in my chest, that won't work.
I am more open to taking my chemo, 5FU, in the pill form and verified its effectiveness, compared to the chemo form, which is the same. Everything has side effects, including the pill form, so I want to think about this a little more, but these seem like pills might be an improvement over the chemo side effects. Almost certainly I would not want to try something new until Betty is back from her trip (a "float trip" down the Nile) just in case, but I think I'll be ready to do this then. If nothing else, this might mean that I could tolerate treatment more which of course would raise my chances for reaching the five-year mark, or so it seems.
Our last day there this trip, I had an endoscopy and another cryotherapy, to good effect, in that this once again created more space within the tumor in the esophagus, improving swallowing; I saw the pictures. Apparently, there is no limit to the number of times this can be done, so I am hopeful. The procedure, however, requires anesthesia of course and I'm tired from that on top of being wiped out during and after chemo, but that's the price one pays. My throat is often sore and scratchy, too, and immediately afterward, when previously I had no trouble swallowing ever, this time I did, and I vomited as well, something that difficult at best to dismiss or explain away. This was scary more than anything but I'm thinking this could have been a one-off thing, as I've eaten several meals since then with no trouble. I have decided to modify my diet even more than before, so I will be cooking more soft foods, including soups. Curious, however, I can eat peanuts and tree nuts without any problems.
While with the Oncology PA, she said that her husband has spinal stenosis as a result of a fall, and sometimes the muscles in his legs seeming fall asleep too, like mine have done on three occasions. Sorry for him of course, but I am comforted somehow that I am not the only one with this condition. A “short” in my spinal cord.
In thinking about “what constitutes quitting?”, something that’s steeping within, I’m reminded, as I have been from time to time since we saw “Hadestown” on Broadway just a couple of months ago, of a line in one of the songs which asks, “Whatcha gonna do when the chips are down, now that the chips are down?” As noted then, I take that to mean, it’s one thing to have a plan and often quite another when that plan needs to be put into action. What will I do then? I wonder.
Driving home that evening, I had a spontaneous episode of vomiting with no nausea or other warning signs, other than some belching and coughing, symptoms more often accompanying trouble swallowing here of late than not.
I received my second follow up call from the GI Lab at CTCA since the last endoscopy and cryotherapy just ten days ago. They use a scale of 1-4, with the lower number being some difficulty, and I reported this time, as well as during the first call, that I’m still having a little trouble swallowing, though certainly less than before those two procedures, even with making some adjustments in my eating habits, primarily eating foods more easily swallowed, such as soups and soupy pasta and rice dishes.
This past Saturday, our friend, Steve, and his new wife, Juliana, visited us over the weekend from Boston. We first met Steve when he was an undergrad at Wash U here in STL, and we’ve kept in touch ever since. He roomed with us in Rio during the 2016 World Cup where we watched matches under the umbrellas of beach-side kiosks and walked our legs off in between the three games, or more, a day. We shared a cramped hostel room adjacent to a disco which, mercifully, was adjacent to the opposite wall and only played music at approaching 90 decibels on Friday and Saturday nights. Good meeting Juliana, who is a delight. So good to see them both.
Here in a couple of weeks, The Champ and I fly to New Orleans where we will meet Peter and Nicole for a long weekend. Betty’s doing a half marathon while the rest of us are eating gumbo. For the rest of the time there, we’ll be walking the French Quarter, taking in music, seeing the sights, and eating more gumbo. In the meantime, today’s coffee is from Greece, courtesy of P & N.
All too soon, we have another visit to CTCA for another on oncology consultation and an infusion. The next scan’s scheduled for the trip after next. The fun never stops!
On our way home from CTCA.
I've had even more trouble swallowing this past couple of days, even more than just a week or so ago, so this does not bode well. Also, there have been occasional occurrences of having some involuntary "spit-up", about like a baby might do, and also a couple of episodes of actual vomiting. This involuntarily evacuating of the contents of my stomach, coming about without symptoms of nausea or any other sort of warning, is even more disconcerting than simply getting sick. I've been carrying around plastic bags for the past few days like I used to, a couple of years ago, carry around Depends.
I reported all this to the GI Lab at CTCA just ahead of this visit and booked a consultation with my guy there, Dr. V., and his staff. When we met with them, his staff first and then him, we scheduled an endoscopy and another cryotherapy for the next day, even though the last one of these was just three weeks ago. During the consultation, Dr. V said he thinks there might be a bulge from the tumor into the passageway, causing all of this, which is something he feels he can address with the procedure, done this morning.
I also spoke with him about the report I’d read in one of the various office waiting rooms in which we hang out while there, the one I’ve mentioned recently which compared survival rates a.) over time with different cancers and b.) CTCA survival rates as compared to all others. Dr. V wanted to focus on how much better CTCA patients fared essentially across the board with those treated elsewhere (and this is one of the reasons we still come here), whereas I wanted to talk with him about how survival rates for esophageal cancer are low over time. In fact, I told him I was writing a book and needed, probably another couple of years, to have some 80,000 words, so I was counting on him to see me through at least until then. He wanted to know if he was in it, and of course, I told him he was because he’s not only my GI Doc, he’s also my Guy.
The procedure went well. There's still cancer there, but my problem, as he suggested it might be, is the result of scar tissue and unhealed scaring. I'm to avoid certain foods, basically breads and other doughy foods, like pizza (but living in Chicago Land, he's Deep Dish, whereas I am thin crust here in STL) and most meats. This might otherwise be a clue that I should turn vegetarian, but I can have fish and minced meats, so no thank you very much for now anyway, though I will likely eat vegetarian as a practical matter. Curiously, as noted recently, I don’t have any problem with nuts. Had two meals since the procedure, with no unpleasant results. Just have to make this work.
Also ahead of this visit, I also placed a call to my Oncology Care Management Team and reported this business of having difficulty in swallowing followed, sporadically, with vomiting. I was reminded that I was prescribed medications for nausea and vomiting when first I went to CTCA, to which I responded that I’ve had no nausea, but maybe a half dozen or so instances of vomiting without any warning whatsoever and that these medications were prescribed some 18 months ago. To which the Care Management Nurse said they were probably still effective and I should try what I had since I had them. I did try them, and they seem to have done the job, for I've had no further trouble in that regard since. Even so, all this is disconcerting of course, for I fear I have lost some ground, but we’ll see.
In meeting with the person I had described previously as one of my Oncology Doc’s Physician Assistants (PAs), who I see unless there’s been a scan and then I meet with the Oncology Doc, it turns out the "PA" I've been seeing here lately is not a PA, but a Nurse Practitioner (NP). No, I do not feel like I have lost a step in dealing with her, as either a female (the PA I've been seeing before her is a male) or as an NP, but I do want to acknowledge my mistake. I've had both PAs and NAs see me in place of a couple of different docs other than oncologists, over the years, so no worries on my part.
Infusion went smoothly, as it always does, but the Oncology NP, having ordered a larger bag than usual of saline to be administered and another round of B-12 shots (which works well for me for boosting energy levels), the process took about an hour or so longer than it typically does, and so we were running up against the next appointment. Consequently, even though someone called for us to say we might be a few minutes late (I insisted that we owed them this courtesy), I might have hurried us more than was necessary, and so, while walking away the infusion pump (it pushes through the 5FU over 46 hours, and The Champ unhooks me at home) started beeping an error message. Being near enough to the Infusion Lab, I simply turned it off and walked back to them. Just outside that lab, the pump started going off again and just inside the lab, I bumped into our nurse and another one, both of who knew immediately from experience what had transpired, which is that our nurse, in an attempt to accommodate us, forgot to open one of the clamps, and it took that long for the pump to register that blockage. Simply a matter of a minor adjustment, and we’re back in business. There’s no doubt a lesson there I’m certain, but I’m too busy to see it.
A couple of paragraphs ago, I said something about “various waiting rooms”, and there are waiting rooms for lab draws, Oncology consults, Infusion Labs, scans, GI consults and procedures, Nutritional consults (we had one of those this trip) but in none of these is the waiting lengthy, like often, typically in fact, in a local medical office. Perhaps some of this efficiency might exist because essentially everyone seeking treatment here, and their caregivers, is from out of town which seems to lead to patient punctuality and trying to do everything in a day or so, but there are sick people here, and make no mistake, so I’m more convinced the courtesy of not waiting for an hour or more – and then being told “we’re busy” by the staff – is because CTCA does not treat their patients like revenue sources. Indeed, we've noticed some cost-cutting steps having been introduced since we started coming here in May 2018, but none of these, as best we can tell, has led to a decrease in quality of care. The guarded door leading into and out of the parking garage, for example, is now locked at 6:00 p.m., leaving access only by the front door, and, as referenced above as a part of every Oncology consult, we see an NP or a PA, except when I have a scan, at which time I see my Oncology Doc, but we know she reviews their notes because she goes over them with us when we do see her. Other places could emulate the steps that CTCA takes to ensure an actual patient-focus, but they don't. The Nutritionist we saw this trip, for example, had four interviews before being offered her job. At CTCA, attitude matters, whereas at so many other places, it does not.
In the Infusion Lab this time, we got the nurse who was the one who showed us months and months ago what even a drop of chemo can do to a hand, and this time she went on to say that there are other side effects as well, such as headaches, including migraines. I remain amazed that such a little amount of spilled chemo can cause such a reaction when I have gallons and gallons of it coursing through my blood, but, as much as there are side effects – and I seem to be affected by them all to a greater or a lesser extent – if extrapolating them and taking her reactions into account, infusion amounts would be immediately and violently lethal. Of course, there are reasons such is not the case; likely this is because the delivery system is airtight. But I'll have to ask.
On another subject, the Infusion Nurse asked how long we’d been married. I told her going on 24 years, whereupon she stated that she thought we were newlyweds since we spoke to each other politely and with respect. To which Betty immediately replied that we were newlyweds and treat each other that way, even though we got married in 1996; and I told her we’d each had some failed relationships we decided we needed to look into and learn from. This led to a discussion about how some couples she and other staff see there at CTCA do not treat their partners like The Champ and I do one another. Even acknowledging that essentially half of the people there are seriously ill, most of the conversations we hear in the hallways, waiting rooms and dining room are at least civil if not, in fact, loving, but occasionally we hear what she hears.
Like that very morning over breakfast, when the woman in the couple directly next to us continuously delivered a low level of contemptuous and condescending remarks toward her partner and, in front of a third person, another man. She seemed to be so good at keeping this passive aggression at a low level that she also seemed to have trained him well over time. If he’s complained, he would have been oversensitive; had he pushed back, even only a little, he would have been a bully. Couldn’t help but think that if “women stay and men leave”, how much longer will he be there and/or just how happy he will and others inside her toxic embrace will be once she’s gone?
Betty and I have not been, so far anyway, on the receiving end of comments made by a patient who’s crabby from being ill and/or who simply doesn’t want to be there – and who does? – like sometimes the staff members do. We often hear laughter and hope that the infusion nurse does or hears more of it than she’s heard recently. I can only imagine how discouraging it must be, to be fussed at, or worse, yelled at, when you’re trying to help save a life or make a life better anyway. We certainly don’t do that in our marriage, and I try never to take any of my occasional discouragement out on her. Indeed, The Champ is wonderful company, even though she doesn’t want to be here anymore than I do. Which reminds me that one of the things I will most miss about having to leave the party sooner rather than later, is that I will be going home alone.
Betty tells me several friends and acquaintances have been especially solicitous recently. No one has said anything, but she thinks this is because of the last line immediately above.