Chapter Eight - The High Cost of Illness (February 2020)

April 15, 2020

The Great Cancer Adventure

Chapter Eight - The High Cost of Illness (February 2020)

2/6/2020

My Otho Hip Guy, who told me in December he was leaving his practice to join another one, has officially landed, and I have a follow-up appointment with him late next week. His new office asked me to get all my records from his old practice, and when I called the old practice to arrange for this, whoever handles the records there balked at giving me all of them and tried to talk me out of doing this, but finally agreed to do so. I'm to pick them up at the old practice early next week. Just another example of how CTCA has a patient-focus whereas other medical facilities do not. The Mercy cardiologist I saw months and months ago, asked for all my records from CTCA, even then many more pages of records than there are of me at the Ortho Hip Guy's old practice, who sent them to that doc’s office, rather than have me collect them.

Life goes on during the Great Cancer Adventure. For example, the car we use to drive 700+/- miles every three weeks now (and it has been more often than that!) has over 180,000 miles on it, but since it's a Honda Accord it still runs like a top, and I do all the scheduled maintenance. A couple of hours after having the car clean inside and out recently, I noticed there was a warning light indicating the driver's door was ajar when it was not. I played with the lock some, thinking that one of the young people at the car wash had pushed something which should not have been pushed, but this accomplished nothing. I played with the “clicker”, trying to lock and unlock the car; it will unlock, but not lock. I can lock it manually, and unlock it with the clicker. So, wanting to jump on this, I call the dealership where we bought three cars from a friend and asked to speak to the service department. I ended up with the service manager, who suggested that it might be a lock, but, while they had a front passenger lock, they didn’t have a driver’s side door lock. And wouldn’t order one unless I needed it. Probably better that he didn’t, ultimately, since, if he had the part, I would pay for its installation, whether I actually needed it or not, but if I do need it, this likely will entail two trips. One trip to determine the problem and a second one to solve the problem. I reached out to our friend, the salesman, but he couldn’t get them to budge either. I have bigger problems of course, but this did remind me of the sorry state of American Medicine.

The Champ and I leave tomorrow for New Orleans, where we will hook up with Peter and Nicole. Looking forward to spending time with two of my very favorite people.

2/11/2020

Just back from a weekend trip to New Orleans where we had a blast with Peter (son) and Nicole (daughter-in-law). They’re great traveling companions.

Their direct flight from Knoxville was late, while ours with a tight connection in Atlanta was on time, and so we got to the hotel well before them and well before our rooms were ready, so, after checking our luggage, The Champ and I walked to lunch and then to the Convention Center for the Expo and Packet Pick-Up. We got back to the hotel, having accomplished our errands for her participation in the NOLA Half Marathon, and collected our room keys and checked luggage, just as they arrived from the airport. After settling in, we went to the hotel restaurant, took an Uber to Frenchmen Street for a stroll, live music, looking for artwork, and dinner. The Champ and I got an Uber back home about an early night, while the young pups stayed out.

I really enjoyed the food there, perhaps especially seafood pasta, Oysters Rockefeller, soups and other dishes easy to swallow. Baked chicken, for example, is no longer anything I can safely eat, as it’s too stringy even under the best of circumstances, but I didn’t come to New Orleans for baked chicken. I also appreciate how they transform traditional Creole and Cajun dishes into other tasty creations. Even when eating carefully and chewing thoroughly, however, there were a couple of occasions when I could not finish or keep down part of a meal, so there have been times when I have not been eating all that much. Fortunately, this did not happen often there, but it did happen. I thought the grits I ordered would be sufficiently wet to slide right on down my gullet, but these were too dry and I could not keep them down.

Being interested in looking at artwork at Jackson Square and the nearby French Market, we sauntered through those streets in the French Quarter looking for something that might work in the living room above the piano. Size was the first criteria and then the painting would have to be in colors that matched Betty’s coloring and also be an abstract reminiscent of something impressionistic or of a Pollack. Obviously, I didn’t know what I wanted but felt confident I would know it if I stumbled over it. We found something on Frenchmen Street (known now more for music whereas back in the day it seemed a more dodgy neighborhood with little to offer) that might work in a stretch but the sizing was just a little off, so we decided we would see if a niece would do maybe three ink pieces of sheet music. Not exactly what I originally had in mind, but think it’s a better choice ultimately. I can see it perfectly and hope I can communicate it correctly. We have an ink piece of Megan’s (the niece) of a Chicago Hot Dog, with diagrams and everything, as if it were an illustration in a textbook. Or a piece of sheet music, which made me think of commissioning her. That's something she did on her own, which she mounted and send to us for display in our house. It's clever, whimsical and an example of dry wit or that's the way I see it anyway. The sheet music renderings, if she agrees to do them for us, would be of pieces Betty’s learned to play. We’re holding off, however, as The Champ wants to learn more challenging pieces than she can now play.

While I do not have any faith in its validity, as a diversion at Jackson Square, Betty and I had a tarot reading done. Much of what the cards supposedly said was factually inaccurate for both of us, but some of it was genuine or at least comforting. As an example for me, I was told I’d been and still was a stronger father than I thought I had been, and, furthermore, I had to let go of any doubts and misgivings since the cards said I had done my job well. I ran this by the kids, including my son and daughter-in-law in person and my daughter by phone, all of whom agreed with the cards. Betty’s reading was even farther off the mark than mine overall, but in one instance the cards saw, according to the fortune-teller, that she had been a major influence in the lives of many young women, something that’s true. We’re back home again now in STL where it is much colder than it was in New Orleans.

2/17/2020

Just having recently returned from our trip to New Orleans and just before we are to leave for our “Time Share” in Zion, IL (actually, guest quarters at CTCA!), The Champ and I did not do anything special for Valentine’s Day. Often we do not. I typically buy her flowers on my weekly trips to the grocery store (unless there is an orchard still living from the last time I bought on), but do not purchase flowers immediately before, on, or immediately after 2/14, as prices are often two/three times or more what they are the other 360 days of the year. I have no patience with these contrived celebrations, when our lives together, hers and mine, are celebrations.

I continue to have episodes of not being able to keep down what I have eaten, typically following but not always, times of difficulty in swallowing. And today, for the first time in over two years, I had a Boost for lunch, after having trouble with a couple of cheese and crackers, something that’s been easy to swallow and keep down heretofore. I had a little trouble earlier in the day with some quiche, which has never been a problem before. I don’t mind the taste of Boost of all. It doesn’t, however, taste like a milk shake, but the chocolate version tastes like chocolate milk, which I like. Until the very last tablespoon. Lesson learned. I’ll leave the dregs from now on.

This has left me more than a little apprehensive about the scan that’s on my schedule for the next CTCA visit. Sure, the difficulty swallowing might be merely the next plot point in the downward slope, and the vomiting merely might be the side effects of chemo catching up with me; after all, I was given some meds, long ago, for both nausea and vomiting, but haven’t used either until recently. Since I have no nausea, I don’t know to take either of those meds as the vomiting reaction seemingly comes out of nowhere. No one on my Oncology Care Management Team seems especially concerned at this point, which is pretty much the same reaction from the GI Team following my latest endoscopy and cryotherapy. Maybe we’re all waiting for the scan. We’ll find out soon enough if anything major has changed. I’m still counting on having at least five years from diagnosis in September 2017 (although the survival rate for my kind of cancer at five years is about three percent), which would take me to the fall of 2022. Being at some 40,000 words as of today for the Great Cancer Adventure (TGCA), I'm about halfway to having a book, and I want to finish it.

Connected this week with my Ortho Hip Guy who left his old practice in December and didn’t officially land with his new one until earlier this month. The hip looks to be solid, which is not a surprise but still a relief. And he wants a copy of the book. Done, of course, I told him. I got a copy of the form necessary to extend my temporary handicapped parking. I don’t always use this, even with my ubiquitous cane, but better to have the pass and not use it, then need the pass and not have it. Unless there’s a problem, I’m good with him for six months, at which time he wants to take another x-ray.

His old practice initially balked at giving me copies of all my records with him there, as he’d asked, as these records comprised some 60+/- pages, but when I insisted, they ultimately relented. Doing this at CTCA (requesting medical records), either coming or going, is just a phone call away, the way they have this setup, but other places try to avoid doing this for you, or that has been my experience. And I had to collect my records in person and deliver them in person this most recent time. Here in the US we desperately need some sort of Single-Payer Health Program, and the universal sharing of records, with the patient's permission, of course, needs to be available electronically without exception. The “business” of American Medicine has always been money, but now, thanks to corporations such as Hospital Corporation of America (co-founded by one of the same men who took KFC public twice, or so goes the story, which is why we now have Kentucky Fried Healthcare rather than American Medicine) and other Wall Street Raiders, the “business” of Medicine in this country is not Medicine but a monetized commodity. How did we sit by and let a bunch of pirates pervert our healthcare, ruining a perfectly good system, and pay essentially nothing in taxes on top of everything else? The patients got shafted and those doing this got rich over our cold, dead bodies, so many of us, and they also looted the treasury via the tax code.

Had another episode where I took a spill due to spinal stenosis. I could tell from the sensations in my left hip (it always seems to be the muscles in that leg) that weakness was coming but I thought I would have some time. Alas, no. Shortly after feeling these sensations, the leg gave out and I fell backward onto a concrete slab at the head of some stairs. Some friends helped me up, for which I am grateful, and I was able to walk off the weakness and proceed down the stairs to my car. Certainly could have been a much worse outcome than it was.

I voted absentee today but before I could get do so, I along with others had to go through security. There were about a half dozen of us emptying our pockets and waiting our turn through the machine, just like at an airport. One among us did not like it that it took him several times to get through (because he did not follow instructions), and he was muttering his displeasure. Nothing too terribly profane and certainly not anything confrontational. The security guards, of which there were four of them, were armed, however, and there had recently been a police officer shooting, so the rest of us were wary. One of the guards asked the gentleman in question several times to stop complaining. He didn’t of course, so he was asked to leave. Several times. He didn’t do that either, and so the guards sort of steered him out the front door, all without laying any hands on him. Quite impressive, really, how they handled this. On his way out the door, he complained at the treatment, said he was going to have them fired, and demanded their names and badge numbers. And then came back into the building. None of this got out of hand, but the local police were on their way by this point, or so one of the guards said. I told her that I would gladly be a witness if one were needed. She first said no, but then followed me into the polling place and got my contact information.

I haven't always done the right or the smart thing at the time of disagreement or frustration, but this guy should have said early on, “I got my licks in, so, yeah, I’ll be quiet.” He’d have made his point and likely would’ve been allowed to go about his business. I don’t know if he was arrested or if he was allowed to leave on his own, as the tension and the situation had defused by the time I left the building. If I had to, I think I could pick him out of a line-up, as, before he started mouthing off I thought he looked a little like Kevin Hart. Maybe he was Kevin Hart and this was all guerilla theater, but I think not.

We just learned the other day a friend of ours, who’s just reached 40 with a small child, has leukemia and is in the Sitemann Cancer Center for 30 days for treatment. A mutual friend put us together by telephone, as I had not heard about his illness. I told our friend about my struggles and we agreed that he would have struggles too, but ours would be different from one another. While he said that he might get through his, if the cancer center found the right treatment for him, he seemed to recognize that if they did not, his outlook might not be all that sunny. He seemed in good spirits, under the circumstances, and he commented on my attitude, whereupon I remarked, as I’ve noted previously herein, I was told early on, effectively, this would not be something I would ever get beyond, unlike he might get beyond his. I told him I’d long since made my peace with all this, whereupon he said he was still having trouble with that possible outcome. I reminded him that, whereas I was in my 70s, married to a wonderful woman, with two healthy, grown children well off into the world on their own, an amazing grandchild, what looks like to be a secure retirement, and had found a spiritual path – and consequently, if it came to that, my work here was done – he was a much younger man with a small child, and had much of life ahead of him.

It’s easier for me to manifest acceptance now than it might little longer ago than that, before I found my spiritual path. Had I been forced to face the facts of my illness before then, I’m not certain I would have had or found the strength to look this directly in the eye. Now, I’m not so much afraid of death as I’m afraid that I might become afraid. And I do experience sadness from time to time because I'll have to leave the party earlier than I'd like. I have, however, completed the Pre-Wake Playlist. There are a wide-ranging selections of songs, some going back long, long ago, and some much more recent. Rock, mostly, it must be said, but there're some spirituals, some swing, and some Sinatra.

We also have a friend who has late-stage, metastatic cancer. She'd delayed seeing a doctor because she didn't have good health insurance, unlike my first friend and me, and so she's in a bad way. Healthcare is a right, as far as I am concerned, and not a commodity.

2/25/2020

Back again from CTCA, the scan (about which I was more than a little apprehensive due to continuing problems with swallowing, nausea and vomiting) looks to be about the same.There’s still have the odd bit and piece showing up, but no actual cancer seen anywhere other than in the esophagus, the site of the primary tumor and the real problem. There might be some thickening of the tumor, but the scan could not discern whether or not this was cancer or from another cause, such as scaring perhaps from the cryotherapy.

We get the scan report from that morning often before we see the Oncology Doc, so, while I cannot necessarily follow everything written, I do know what questions to ask her. She indicated that, due to the scan results, she might recommend another treatment regiment, introducing another component of the chemo cocktail to boost up the 5FU to something similar to the Folfox (but with something other than the compound that caused all the side effects), which would put us back on a two-week, rather than a three-week, regiment, so this would be a two-step upgrade. We’d rather drive up less often than more often, but unless I have an endoscopy/cryotherapy, we are able essentially without exception to schedule appointments at CTCA to where this can be a 36 hour trip. This new chemotherapy, if we go in this direction, would still allow us to have the port needle removed at home as it is now, so there’s no change there. And the Oncology Doc, due to the uncertainty of the cause of the change in the tumor, is OK with waiting to see how I swallow and how the meds help with these relatively new side-effects of nausea and vomiting. My next endoscopy is scheduled for six weeks out, so whatever that shows can be taken into account. This last one, three weeks ago, continued to show scaring from the cryotherapy, so there really might not be any cancerous change to the primary tumor.

So, the scan might not have shown anything new after all, and if it did, we should know soon enough. Consequently, the overall treatment plan might continue to be as it is currently, i.e., treat with chemo therapy to halt any spread of disease and use cryotherapy to burn off any internal growth.

On these trips to Zion, Betty and I’ve been meeting one of her brothers about halfway up for lunch, which puts us on track and gets us into guest quarters at CTCA at about 4:30 pm, which means, after a little settling in, we can have dinner at the cafeteria about 5:30 pm, a little early for us perhaps, but any later than that and we bump up against closing time. Besides, this affords The Champ the opportunity to be present for her piano gig on the mezzanine level after dinner. Seldom is there more than a few people there in that spot, actually the recovery room for surgery, and she always asks anyone present if they would mind her playing, but this time there was no one but us. She keeps getting better and better, even when branching out into music she hasn’t been playing for long or hasn’t played recently. We’re back up in the room by about 7:00 pm or so for an early night, as we like to hit the ground running in the morning. I don’t have any trouble getting up early at CTCA, as the theme from “Rocky” begins to play in my slumbers about 4:00 am or so. Sometimes she “sleeps in” and meets me somewhere along the line at 6:45/7:00 am. She needs here sleep more than me for the trip back, as I usually too wiped out to do more than the first hour or so, and often not even that. I do drive about half way up, so she “only” does three-quarters of the driving.

2/27/2020

I continue to have trouble swallowing and keeping food down, even with taking one of the medications prophylactically. I did call my Care Management Team at CTCA to see if I should simply take one of these mediations before every meal (but which one?) or if I need something different and/or stronger. If I am indeed on a relatively mild dose of what would work for me, initially, rather than simply solving the problem with a stronger dosage, I’d prefer fiddling with times of day, etc. as I take enough meds as it is already, certainly when considering the chemo. I’ll almost certainly go along with their recommendations, however, as otherwise, it’s going to be more Boost than likely is good for me. I have the welcome problem of needing to keep my weight where it is. Not because I am in fighting trim, but because any weight loss makes these folks nervous. (Having herd back from my Care Team about these two prescriptions, they’re convinced that I need to keep what I have for nausea and vomiting, for now anyway rather than upscaling, and so I’ve asked that they renew a prescription I first received some eighteen months ago. One seems to work better than the other, but I’ll alternate them nonetheless, as the one that seems to work the best is only to be taken once every eight hours before meals.)

As noted recently, I’m looking at two-step step up in chemotherapy. Likely I’ll be asked to increasing my chemo to something more like Folfox (5FU, my current cocktail, plus an add-on, albeit a different one than the one that resulted in so many sided effects) and also I’d receive chemo once every two weeks, rather than once every three weeks. We took a double step back several months ago, so this would be nothing more than getting us to where we had originally been. As it stands right now, being a little less than a week away from my last chemo, I’m still feeling more than a little under the weather, but by the time a week has past, I’ll be, more or less, my old self again. Shortly before I get another treatment and, accordingly, am on that roller coaster again. It could of course be worse, as I’d feel good for much of a fortnight assuming we revert, but right now, though likely for not much longer, I feel pretty good most of every three weeks.

Betty was complaining (in a medical sense, I hasten to note, since she’s certainly not the crotchety sort) of a painful rash on her back, where she had previously had some allergic reaction to dyes. I looked at this and told her, “All I can tell you is, it’s not shingles, as this does not look anything like what I had, when I had shingles.” Failing to get an appointment with her allergist, she was able to see her Primary Care Doc who took one look at the rash and immediately identified it as shingles. Good thing for everyone, including me, I dropped out of medical school.

The Champ has a range of ointments, patches and medicines to put the kibosh on this before she leave for her “float trip” down the Nile (actually a cruise to the south end of the Nile, the head waters) here in a couple of weeks, immediately after we return from our next CTCA visit. We’re scheduled to be home only long enough for her to unhook me from the chemo tubing and pump before I drive her to the airport for her trip to Chicago, to meet up with a niece, with whom she’ll travel together to and back home from Egypt. She’ll be gone about two weeks, all total. One would not want to take such a trip while suffering the ill effects of shingles.

She’s planning on getting the newer shingles vaccination once she’s back but I’m getting mine sooner than that, having been cleared by CTCA for me to do so. When I called them about this, they didn’t seem too concerned. I did have shingles in 2010, returning from South Africa and the FIFA Men’s World Cup. Somewhat unpleasant, I’ll admit, but really not all that bad in my case as these things go, as I had a rather mild attack with hardly any discomfort. A weird rash, however, like a drawing of some huge surface nerve, whereas hers even looks like it hurts.

We did our taxes last evening and both the federal and the state were accepted electronically, so soon we’ll be receiving the largest refund we’ve ever received, separately or together, primarily due to all the medical costs incurred from travelling for treatment. I didn’t even have the prescription drug costs last evening, so in the event we’re audited, I’ll pay any fees and penalties and refile. And get more than we might be paying out. I don’t cheat, however, or even fudge much, but the dollar amount was a high four figures which we asked the tax preparer to triple check. We drove over 14,000 miles (it’s over 600 miles per round trip from STL to Zion, IL) and spent some $2,500 in housing costs at hospital guest quarters. I know because I have my diary with the dates of these trips, and I have housing receipts from the hospital which match them, so I am not making any of this up. It cost a hell of a lot of money to be seriously ill in this country, even when you have good insurance, which we do.

A hell of a lot of money.

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