Chapter Ten - Days of COVAD-19 (April 2020)
May 13, 2020- 17 min read
The Great Cancer Adventure
Chapter Ten - Days of COVAD-19 (April 2020)
We’re leaving soon for another round of chemo therapy at CTCA north of Chicago and a follow up appointment with the GI Clinic there to make certain my feeding tube is working as it should.
Illinois has a mandatory stay-at-home order, which might mean that we might be stopped by police or state troopers, so I have printed off my schedule for the next trip. While this is not an official “travel pass”, presumably this would be sufficient should we be stopped.
I had a feeding tube put in last time we were there. Not certainly this is going badly, but am most certain this is not going as expected. There is, for example, little if any sign of infection. I have no fever, but there is some redness underneath this rubber washer holding the tube in place, which I think is more from irritation than from infection, and this smells most unpleasant, like sour formula - and the formula does not smell all that appetizing to begin with. I’ve called a couple of times but I will feel better about this once CTCA GI Clinic looks at this in about a week or so. There’s been some consistent, pink drainage and something someone described as the color of coffee grounds. I’ve had that essentially from the first time The Champ changed the dressing beneath that rubber button. While the pink drainage is getting more and more faint, the coffee grounds discoloration is not, and in fact this last couple of days, it’s coming out much more damp than before. Maybe this is nothing more than my taking too much of the formula at one time, but again I would like some answers, and someone has to know these things. The good news is that the further I get away from the last chemo, the more energy I have, which is not only usual but suggestive that there’s no infection. Now’s not the time to get an infection.
During these days of the pandemic, when all of us have been ordered or at least encouraged to hunker down, our behavior as individuals and as members of groups has been modified at least temporarily.
For example, as a friend of mine, Rich, observed, now is the Hour of the Introvert. I would agree. Extroverts seem, under more typical circumstances, to drive the agenda, not primarily because they have better ideas, but because they cannot keep their thoughts to themselves and so the rest of us are obliged to at least hear them spoken out loud. This does not always lead to good outcomes, as the Introvert often is the better leader, studies have shown. Studies have also shown (Harvard School of Business) that all too often the crowd will follow some imbecile who sounds confident, which an Extrovert often is, over the cliff, even when the Introvert realizes this charlatan has no idea what he’s talking about (and it’s often, though not exclusively, it must be said, a male), leaving the Introvert who sees through the Smoke and Mirrors, to save the day by heroically standing in the way of the stampede, something that doesn’t always end well for either the Introvert or the Lemmings. Perhaps the only good thing that has come from the Corona Virus is that some Extroverts have lost their audience. The president (his is a very small “p”) being an exception.
Another observation is that many of us are keeping in touch with family and friends via various video conference platforms. I have always worn pants to these, whether at home or at work, even the most informal of them, but I do find that I am much more likely to comb my hair now than previously. Not certain why, so this is just an observation.
I wonder about sales for Corona Beer during the Corona Virus World-Wide Pandemic.
And what will we do about cutting our hair? For myself, I had already decided to let mine grown out to where the sides are over my ears. This assumes my thinning pate can handle this. If not, then a burr, but I’m going for the late 60s college look, for now anyway.
The Champ and I have driven about a quarter of I 270, the loop around STL, three times last week each way, and on each occurrence, the traffic has been light, much lighter than before the pandemic, but also there’s been the random car driving much faster than the rest of us. Under more normal circumstances, such speed would not be possible of course, as the traffic would be too dense, but I mention this because I wonder who these people are. Are they people who simply must separate themselves from abusive partners or family, even if only briefly, or are they already so stir crazy that driving a hundred MPH or more provides them a release, albeit briefly, they might not get otherwise? As long as traffic is lighter than light, I have no worries here, but if more and more of us seek this form of solace, there will be a violent reckoning. And now’s not the time for any of us to be a problem for the rest of us.
The hole in my abdomen for the feeding tube is indeed not working correctly. It drains too much and when I try to flush the feeding tube (SOP each time it’s used) with about an ounce of water, it comes out my stomach. We’re going there (CTCA in Zion, about an hour north of the Chicago Loop) in a couple of days for regularly schedule chemo and a GI appointment which I insisted be made. I desperately want to get beyond this.
So, instead of using the feeding tube, at least until the problem with the hole in my stomach is fixed, I’m eating things. While this is almost exclusively liquids like smoothies and Boost, I have tried certain solid foods, such as potato chips and pretzel chips and hummus. Such snack food is often high in calories, but I do need the calories as otherwise I would lose even more weight. The Oncology Care Management Team doesn’t seem terrible concerned that I have lost five pounds since I was there last, but I am encouraged to eat more. Oh the irony!
On our way to CTCA, we got a call from the hospital, noting that procedures have changed again since we were last there. For example, everyone will be issued a protective mask and since these masks are at a premium, we’ll also be given a “special container” to keep it for each subsequent visit. Turns out this “special container” is a brown, paper bag, the kind I once used to hold a quart of beer back in my misspent youth.
Oncology consult went well, with no problems except that the NP suggested, and Betty agreed enthusiastically, that we see the GI Doc that afternoon, rather than the next morning as scheduled. I felt like things were moving too fast –why would I see him the afternoon prior to a previously scheduled appointment?I was afraid of course. Fearful that things were getting out of hand, that I was being carried away by events, that, somehow, I might get passed off to someone other than the GI Doc and then where would I be? Consequently, Betty and I bumped heads. When I started thinking of all that she’s done for me and all that’s, unfortunately, likely still ahead (I am constantly mindful of the survival rate for esophageal cancer being low, single digits after five years, and I’m just halfway there), and how pretty much anything The Champ does or suggests, as unlikely as it might sound at the time, will, somehow, turn out to be the right alternative. Like seeing the GI guy right away. Maybe he had a time scheduled for a procedure for me tomorrow anyway, or maybe our going there this afternoon accomplished that. In any event, I need to remember her suggestions are typically sound, even when they result in my feeling stark, raving terror. Being more Fact than Feeling, sometimes I am ambushed by my feelings, especially feelings of fear, such as will I be able to say good bye to my loved ones, at least virtually during this time of plague? In any event, I am glad I have been taught how to make amends for anything I might have said that might have hurt The Champ’s feelings. I just don’t know where I would be, if not for such tools. Probably sleeping under a bridge. Or hiding in some pathetic man cave, watching Fox News, blaming everyone but myself for my failings and shortcomings.
Turns out the problem with my feeding tube is that the part that’s inserted into the stomach wall has come out and needs to be replaced, so I’m scheduled for a procedure which will replace this tube with a new one or result in the GI Doc removing the tube with an eye on doing this all over again in a few weeks. I’m OK with letting him make that call, as it’s in his area of expertise and not mine, since I’ll be underneath the fog of anesthesia. The Champ’s on board with this, too. Assuming everything goes well, we’ll still be home tomorrow evening. Or at least that’s the plan.
We are indeed at home from our latest visit to CTCA. I did get a feeding tube replacement, and initially this one didn’t look like it would work any better than the first one, in that there was a lot of drainage and oozing from the hole in my stomach, but now, after a couple of days, the drainage is far less than before, especially when I ingest the formula prepared for the feeding tube. That is to say, Boost, for example, something I take by mouth, is much thinner than the thicker liquid taken down the feeding tube, which results in less drainage. I really want to make this feeding tube business work or have it taken out. I can still eat the occasional solid food meal or snack, but nourishment via a feeding tube, perhaps exclusively via a feeding tube, looks to be my lot. Consequently, if I have this taken out for whatever reason, almost certainly that treatment failure would shorten my life.
Having had another round of chemo a couple of days ago, I am wiped out. Following the pattern, I expect to feel more energetic here in a couple of days or so.
I had a Corona Virus screening test done while I was there at the GI Clinic. A nurse inserted a full-length two-by-four plank deep into each nostril and twisted it, back and forth, up and down, and in and out, for a while. Then left these boards to steep in their own juices prior to telling me I didn’t have the virus. The hospital is only testing the patient and not the caregiver, but since The Champ and I live in such close quarters, if I don’t have it, then she likely doesn’t have it either. Also, a real relief that I was negative, as otherwise they likely might not have replaced the failed feeding tube.
Another virus precaution is that the caregiver cannot enter the hospital except in the company of the patient. Used to be, for example, The Champ could have left the hospital to run an errand or go for a walk while I was in chemo, but now, unless I am with her, they won’t let her back in on her own. I could come to the lobby and effectively sign her in of course, but the days of coming and going as we please, at least for now, are long gone.
The cafeteria will still allow folks to eat there, so it’s not grab-and-go, as we were told it would be, but that may change. Besides, it’s the only place one can get away with not wearing a mask.
There’s guest sleeping quarters in the hospital, but these are now reserved for staff, so housing’s tighter than it had been, but we scheduled for the next couple of visits, so we’ve got a place to stay in hospital property. Guest Quarters North is only a couple of blocks away, and they have a shuttle that runs three times an hour.
Being on a two week schedule for treatment, we leave for CTCA in a couple of days.
I happened to check my schedule for this next visit, fully expecting to see the GI Clinic either on Thursday afternoon or Friday morning, which has been our pattern and our consistent request, but found instead that we have an appointment Wednesday afternoon. Turns out we can make that (assuming no car trouble), if we leave much earlier than usual that morning and, if anything, The Champ is even more eager for us to see the GI Clinic than I am, but I don’t have any record of anyone telling me we were being moved to Wednesday afternoon. I’m calling on Monday, therefore, to pick a bone with someone there (but who?) about moving me without my input and also not telling me about it. Everyone’s stretched thin, I know, but this is not only unacceptable, it’s very much out of character for CTCA and their patient focus. If they’re moving from being some special place to being more like what I might expect from one of the hospitals in STL, then, especially since I may not have all that much time left anyway, why make the drive every two weeks?(I was able to reach the head of Scheduling and went over with him all the various mistakes, etc. on my schedule of late. He was apologetic, as expected, and seemed also genuinely dedicated to making sure nothing really weird happens again.)
Having been told the hard truth at the beginning of The Great Cancer Adventure, I have long since made my peace with my having, perhaps, five years of good quality of life, with no cure; the initial oncologist (and I have had four of them) said “…hard to treat and likes to come back.” Again, I am OK with this, as essentially my life’s work, with the exception of finishing this memoir, is done.
I’m also still OK with fighting for good quality of life until I reach the point where this is not possible, as likely will be the case in the last stages, but I want to feel like me, like who I see and feel myself as being, for as long as I can. Sure, I couldn’t go to the gym even if I felt stronger and had more energy, as gyms are closed. And, right now anyway, I have this hole in my stomach which precludes my doing anything involving the core, so most exercise is out. Oh, how I miss that. Oh how I love to sweat.
If the feeding tube stays, and this means that I only can do lower body work, then I can live with this, but I’d like to feel like I could push my upper body, at least a little. On the other hand, if it looks like I can feed myself by mouth, I might want to take the feeding tube out, even if this means that this decision, ultimately, might shorten my life, i.e., over time I might not be able to swallow enough calories, even in liquid form, to sustain life. What I am saying is this: from here, from this moment in time at any rate, I might be interested in trading some days for a better quality of life even if this means a shorter life span.
Just checked in with a friend of ours who said his cancer is in remission. I am so happy for him and for anyone else who has had such good new
We are back from our most recent visit to CTCA where, in addition to another oncology consult, this time again with the NP (typically, we only see the oncologist when there’s a scan, something coming up in the next couple of visits), but the highlight was the appointment at the GI Clinic where the doc pulled a little on the tube and consequently placed the end of the tube in a different position. Everything worked better immediately afterward, as it’s easier to do a feeding, there’s less drainage, and they found a better spot to hold the distal end (the outside end) of the feeding tube, something that’s important so that all the flopping around this doesn’t put a strain on the tube and thus result in more drainage. Big win, all around. Since then, there’s been a little more drainage than there was, but I’m not worried yet, as we were told the tube would rise and fall a little on its own and besides I think I can fix this by moving the tube end a little bit when next I change that holder.
When the GI Doc moved the tube end holder, he simply picked at the end of that patch, around 4”x4’ inches, and pulled, thinking it would be practical and perhaps even more kind ultimately to cause more immediate pain by ripping out some chest hair, rather than more prolonged discomfort from pulling the patch off slowly. I saw what he was about to do, wasn’t therefore caught by surprise, and consequently didn’t even flinch. Which so surprised him that he exclaimed how could I stand that? Never ceases to amaze me that medical people seem shocked at this, when to me it’s obvious; I have Stage Four cancer which “is hard to treat and likes to come back”, so a little immediate discomfort or even pain is the least of my concerns.
Betty records on her cell all of these appointments and sends them off to my daughter, son and me. I typically do not listen to these, probably close to 75 by now, as I am “in the room when it happens.” (Thank youHamilton.) But this time I listened to the Oncology Consult with the NP, and almost didn’t recognize my voice. Yes, I know that most of us do not always recognize our own voice, but I’m talking about the imposter who spoke for me. He sounded so much older and more ill than I think I am, which brought home just how sick I must be. I mentioned this to The Champ who agreed with me that I am sick. I know all that, but I didn’t know I sounded so bad. Maybe this will get a little better with the feeding tube having apparently been addressed, but, as always, we shall see.
I can get all of my caloric needs with six of the feedings, so I am shooting for that daily, with the occasional milkshake, triple cheese burger (without the bun) and bowl of wet chili. Need to go slow on the milkshakes, however, as my blood sugar is elevated. Not dangerously so, but still it’s elevated. Don’t need to add diabetes on top of cancer and a feeding tube.
Today is the birthday of The Champ, The Babe, my wonderful, wonderful wife. I got her something for her birthday, although some years I do not as every day with her is a celebration, and it’s a certificate for whatever way she might like to pamper herself after the virus quarantine is lifted.
“The kids” (my term of affection for my grown offspring, their spouses and the grand) had been planning a trip to see us, but I’ve been asking them, repeatedly, not to come until we get an all-clear from experts, as it would be a terrible thing for one or more of them to become seriously ill from visiting while the pandemic still rages. As badly as I want to see them, we can do this virtually until it’s safer. This feeding tube has been a grind, although it looks like this might be levelling out, and I do sound older and weaker than I think I am, but I probably have some good while yet, so there’s no reason to take any risks. I think they are in agreement, but the problem with raising children to think for themselves, is that they do, so we’ll see.
I really cannot eat much of any kind of solid food anymore, and sometimes even liquids are a problem, so I’m relying on the formula and the feeding tube for nourishment almost exclusively. I can for example, drink the occasional glass of water or Boost/Ensure, but that’s about it, so it’s a wonderful thing I’ve gotten more comfortable with the feeding tube and the formula. The Champ and I are planning a romantic dinner at home this evening to celebrate her birthday. We’ll order a meal of her choice which she will masticate daintily, whereas I will be seated next to her feeding my hairy abdomen. Every woman’s dream, right?
I double checked with my CTCA contact who liaisons with the company supplying the formula. They were expecting to hear from me a week or two ago about a month’s re-order, but that didn’t happen then as the first tube didn’t take and even after the second one did (fingers crossed!), it still took some time to work my way up to six containers day. I’m there now and have about two weeks’ worth of “food”. She, my contact, gave me the telephone number to deal directly with the supplier. I’ll need to carefully manage this delivery, as it’s several heavy boxes, and while we have someone, a wonderful neighbor, who gets our newspapers, mail and packages for us while we’re back and forth to CTCA, we’re not about to ask her to lug these into our house in our absence. Just another damn thing to handle from being serious ill.
“Travelling under the radar” back and forth to CTCA from STL for me means making our round trips with as little possible risk of exposure to Covid-19 as possible. In six hours, we must make gasoline and restroom stops, however, so we take advantage of the Love’s Truck Stops along the way. They’ve have hand sanitizer just outside their restrooms forever, have social distance expectations at their cash registers well marked with tape on their floor, and, being mostly a truck stop, there’s almost always an open gasoline pump for automobiles and usually a couple of them. Quick, clean in and out. There’s even a hand sanitizing station just inside the front door.
(Indeed, I am in the process of making my peace with the feeding tube. I do miss real food from time to time and wish I could eat some – such as the bacon, eggs and toast which inserted themselves into my thoughts earlier this morning, this last day of April – but again those days are gone, just another thing I’ve lost from where I am in my cancer adventure.
I feel incredibly vulnerable in public or even in my home, as it would not take much, it would seem, to pull the tube out far enough to where I could no longer take nourishment from it, and since I cannot swallow much of anything that needs to be chewed, I actually am quite vulnerable. On top of everything else, this nourishment, even a day’s worth, is much heavier than one might think, about the weight of a six pack of soda, so even a long weekend would be the same weight as a case of soda, not exactly something that would fit easily into the overhead baggage compartment, especially for someone who has a hole in his stomach. Therefore, this means that, while I do take the occasional trip outside our home for groceries – in fact, I just returned from one – and a bi-weekly drive back and forth to CTCA, by and large I’m not going anywhere, as there’s too much to risk and too much to carry.
Another loss is the previously planned trip to LeMans. This needs to be cancelled, and the only reason I have not formally requested a refund of my “nonrefundable” deposit for hardship reasons, is that I’m not at all convinced LeMans, rescheduled from June to September, will be held at all this year. More likely to get a refund if cancelled, or so it seems to me, than by asking for an exception. So, no more airports, no more international travel, and no fond farewell to France. People we would otherwise go to see, the kids for example, will have to come here to see us.
And perhaps the biggest loss of all is that this cannot be a good thing. It has to be a sign that I may need to leave the party sooner than expected I had hoped to have five, good years, even knowing the odds are long for my kind of cancer, but from where I sit at two and a half, five years looks like something fading into the mist of wishful thinking. Ultimately, however, no matter, as I have what I have and do not have what I do not have, and I am willing to look whatever is coming toward me, right in the eye as it approaches, so nothing really has changed. I am sad, though, and feel a loss.)