Chapter Eleven - A Stranger Comes to Town; Somebody Takes a Trip (May 2020)
June 04, 2020- 12 min read
The Great Cancer Adventure
Chapter Eleven - A Stranger Comes to Town; Somebody Takes a Trip (May 2020)
Technically, I can still eat, despite what I wrote recently about losing that privilege, but almost exclusively only through my feeding tube. I can, for example, eat up to four almonds at a time or (but not and) two or three wheat thins, provided I chew them into a pulp, but anything more than that, and, my esophagus being what it is from the cancer, there’s the very real risk of vomiting this and whatever else might be in my stomach, so not a good idea to push here. I can eat chocolate, if I allow it to melt in my mouth, and I can ingest a smoothie or a milkshake, as long as the strawberry version is not made from fresh strawberries; those little strands are a problem. I do need to watch glucose intake, however, as my numbers there are creeping up. I don’t need another disease.
And I’m learning about nutrition from a different perspective than previously. Before I read every label to make certain no sneaky calories got by me, but now that I need to have more calories than even my formula provides, I’m obliged to look for ways to get more of them. Nutrition is simple. There’re essentially only three ways to add calories easily. One, protein, is perhaps the most desirable, but there’re only so many sources of this for someone like me, and protein is not calorie dense like sugar or fat. I can add protein power to a smoothie or a shake, but both often have excessive amounts of sugar, even no sugar added versions do, being fruits. Too much sugar is of course a problem, as is too much fat, but both of those build calories fast. Theoretically, six 250 ml containers of the feeding tube formula, at 1.5 calories an ml, gives me what I need for the day, but having cancer, I need a little more than that, which I get from Boost or Ensure, the “glucose control” versions due to concern over the aforementioned creeping glucose levels in my blood work . So, I count calories every day, but in an attempt to get more than I need in theory, as cancer makes its own rules. I never imagined having this problem. I find I think about food all the time, perhaps understandably to some extent, but even so I cannot eat much by mouth. On the one hand, I would dearly love to rip into a steak, a chops or a huge piece of fish, but since I cannot swallow, this is pointless.
We have just returned from another whirlwind trip to the Cancer Treatment Centers of America (CTCA) location in Zion, IL, about an hour north of the Chicago Loop. The first day is mostly devoted to making the six hour car ride, but we drop off at the Emergency Room on our way the empty Folfox bag and tubing from when Betty unhooks me from the pump 46 hours after I’m hooked up in the Infusion Lab the previous time; these dregs are keep in the trunk of our car until dropped off. The next day, we get checked in, get lab work done, meet with the Oncology Team and proceed to the Infusion Lab. Here of late, I’ve also had several appointments with a nutritionist to go over any questions in general and about the feeding tube in particular, and we’ve also been spending time in the GI Clinic to make certain my feeding tube is doing its thing. Between us, the GI Doc and me, we may have been a little too rough with the tube this time, as there was much more discharge for about 24 hours afterward than there had been in a very long time, but that seems to have settled itself, fingers crossed, so I am not changing the bandage as often just a day or so later, which is a relief, after one tube failure and consequently a second procedure to put in a replacement. Our next visit at CTCA is in a couple of weeks, when we get a scan, which hopefully will be good news, or at least no more bad news, but we’ll see of course.
Turns out that the GI Doc has been a big proponent of marijuana for decades. Illinois, being a Blue State, has legalized cannabis with perhaps certain restrictions (haven’t paid any attention to the details here), whereas not so much in Missouri, a Red State. I am not interested in doing this for any number of reasons, one of which is that I have no legitimate need for it, at least not now. Perhaps toward the end, as an alternative to morphine, should that become a part of my life, but now, no. Interesting, though, that my guy, the GI Doc, is such an advocate and has been. We also have a relative who lives in Florida, a Red State, who works in the legal part of that industry and who’s also a big advocate for cannabis, certainly when it comes to dealing with serious illness, so I’m hearing from two sides now. Attitudes change. Perhaps even mine someday.
Traffic, both here and on the road to CTCA, is still lighter than previously, but the number of cars driving at excessive speeds has not decreased, so the roads are more dangerous than before. Unless the police and highway patrol do something about this there will be a bloody reckoning and bloody hell to pay.
Slowly, Missouri and Illinois are re-opening. Apparently, here in suburban STL County, nail saloons will be open Monday. Betty and I both have appointments early next week for pedicures. Mine, because I cannot clip my own to nails, due to the history of the right hip. I will not be there long, and I will wear a mask and gloves. Due to those precautions, and also that our stylist is originally from South Korea where they are way ahead of us at this point in isolating cases, I feel reasonably safe. (We used to be Number One in so many things, but now it’s pretty much only military spending and pandemic cases.)
Not every time, but with some frequency, I have trouble swallowing prescription medication. Bothersome.
We have hired someone to act as a very part-time gardener, as my days of getting dirt under my fingernails are long gone, and already she has made great progress. I was toying with the ideal of continuing to grow some peri peri peppers again this year, but decided against it, not even to give some to the kids. I still have several dozen left over from last year and will give those to them when they come here. Once it seems safe for them to do that.
Continuing to have difficulty in swallowing my prescription medications, I’m more than a little apprehensive about the scan I’m scheduled to have this next trip to CTCA. I’m not expecting, really, any good news about the primary tumor site, the esophagus, as there does not seem to be any physical space within the walls of the esophagus for much of anything to pass other than fluids, so how could there be? Hopefully, the disease has not spread, which is perhaps the most that we might expect, but we shall see. Typically, CTCA posts lab and other test results so quickly to my patient portal, I might have the results before we see the oncologist some two hours after the scan. I don’t have to look at these, I know, but I want to see what’s coming. That no one tries to keep this information from me, is one of the things I like most about CTCA.
Today, since STL began to open yesterday a little bit, we have appointments at a nail salon at noon. Mine’s merely to have trimmed long, gnarly, quarantine toe nails I cannot reach myself due to a hip injury (dislocated artificial hip) and The Babe to keep me company and to get an actual pedicure. We’ll both be wearing masks and gloves. This afternoon, we’ll be watching from home an on-line, PhD graduation ceremony for my daughter, Elizabeth. Since The Champ and I don’t get out much or have many structured activities, me even more so than her, this constitutes a busy day. Except for CTCA visits, my busiest day in months. Two appointments! Hold still my heart!
The Great Cancer Adventure continues….
We’re back home from CTCA, where we got some perhaps not unexpected but certainly unwelcome news from the latest scan. No improvement in the primary tumor in the esophagus; growth in an already cancerous lymph node adjacent to the esophagus; and cancer on a new lymph node, under the left arm, evidence of metastatic disease, aka the cancer has spread even further.
Knew all this before seeing the oncologist, as the hospital posts this information as soon as it is read on my patient portal, along with a disclaimer. I want to know because I want to know what’s coming, and, besides, this gives me and The Champ time to process and come up with questions.
Metastasis means that chemo needs to be changed, and the Oncology Doc, who I only see after a scan, went over our options. The one that made the most sense to all three of us (I asked her what she would prescribe for a favorite uncle!), is a chemotherapy called "Irinotecan" (eye-rye-o-TEE-can), but apparently commonly called by patients “I Run to the Can”. Four rounds, once every two weeks and then another scan. About the only good news here is that this takes about two hours in the infusion lab, a total of four with other cocktails, and I’m disconnected there rather than 46 hours later at home. I did, however, have adhered to a deltoid a device about the size of a package of dental floss, designed to increase white blood cells, so there’s always something. Having done its duty, that’s long since off my arm.
Betty said she found it alarming to hear the Oncology Doc speak about treatments and their relative toxicity, which calls attention to the comparatively few choices I have left. Even so, we’re in reasonably good spirits from all this, part of which is that we both have long accepted my trajectory is downward. Besides, I’ve had, and am having, a great life.
Really watched my sugar intake and did fasting blood work to get a good base line reading, as my glucose has been creeping up. This reading was just barely over the max range, so diabetes seems avoidable, if I don’t push it. Treated myself to a milk, protein, and frozen yogurt milkshake. I can do that fortnightly, but otherwise, I’m off sweets. Which might even help my prognosis, as cancer seems to be partial to sweets.
We’ve noticed at CTCA a slight slippage in the service there over the last year or so, not all of this can be attributed to changes caused by work-at-home from the pandemic. They had a dramatic staff reduction about a year ago which is still playing itself out. For example, we now have to wait for scheduled appointments when that never used to happen, and, again, I only see the Oncology Doc only after a scan, when I used to see that Doc at each visit; I have great confidence in the Nurse Practitioner and the Physician Assistant we see in between scans, and they are in contact with the Doc should she need to be drawn in, but still it’s not the same as it used to be. I mentioned this to a staff member, who said I should draw this to the attention of management, as they always listen to patients, and I plan on doing just that. We heard a rumor the hospital has been sold, which makes me wonder if their patient-centered approach will continue, assuming there is any truth here, and another rumor that they’d signed two additional national health insurance companies, so things might pick up not only for them, but also for the rest of us. I’m sticking with them, for now anyway, despite these concerns and the 350 miles or so drive each way once every two weeks.
On a lighter note, while listening to Chicago Public Radio on our way of town, we heard a news broadcaster refer to a massive electrical problem in “the tower formally known as Sears.”
And, on an even more welcome note, my daughter, who recently formally received her PhD Degree during a virtual commencement at Johns Hopkins School of International Public Health, was able to get away this weekend, and is here with us. She’s always been great company, and I deeply enjoy hearing her and The Champ laugh over something, even if it’s at my expense. I do have a great life.
Being seriously ill and interfacing with those who are not, affords some absurd moments. Such as yesterday’s visit with my primary care physician.
Actually, my primary care physician is the Mercy Family Health Clinic, so, while I actually have someone designated to serve in that capacity (someone I picked up when he was a resident some thirty years ago), I hardly ever see him, seeing instead a series of family medicine residents as they rotate through that service. As I have good health insurance, I could go elsewhere of course, as I am not required to see someone there, but I find it interesting dealing with all the young pups (some of whom are older than your standard, central casting specialty resident, it must be said) and one of the junior specialists always double checks the work of the resident, so I am covered I think.
I thought I was seeing my latest resident for a blood pressure prescription check, and she had it down that I was there for a Wellness Assessment. Having stage Four Cancer, with recently documented further metathesis, I don’t have much “Wellness” at all to “Assess”, but I did answer the questions on the assessment form accurately. Such as “Do you find yourself sometimes thinking your problems are overwhelming?” Even knowing that I am not responsible for my thoughts, that these flutter thorough the mind like leaves on a breeze, being as ill as I am, how could I truthfully answer anything but “Yes?” So I put that down.
The young man reviewing my responses and noticing my overall demeanor otherwise, wasn’t really sure what to do with what he had been told, so I filled him in on the rest of it. Serious, seriously ill; latest testing showed even more discouraging news; single digit survival rates at my stage of disease, etc., etc., so, yeah, sometimes I feel overwhelmed. But it’s OK, kid, really it is.
I feel like I should be signing off and in some way I am. Still, the Great Cancer Adventure continues….
Feeling overwhelmed by the side effects of the latest chemo (8-10 episodes of diarrhea per day, beginning in the dead of the night) and knowing the options from here are limited, after thinking about this over the weekend, I decided to suspend treatment. Permanently. While the ending might not be pretty and the decline steep, the ride bumpy, I’ve had enough of living without much prospect of good quality of life, even if only temporarily. Besides, the survival rate for people with my type of cancer is in the single digits, so I’ve had a good run and cannot reasonably expect much more than I’ve been given. Yes, the chemo side effect should even out over time, but even so, now seems like a good time to see what’s next. So, I called CTCA Monday morning and let them know of my decision, and things proceeded quickly. I hope we parted as friends, but it does seem like I was never there; I’m a ghost with little electronic trail.
The Champ called a brother (Mike) who has lots of experience with hospice, and he had two recommendations, both of whom sent reps to our living room by the afternoon, and we made a decision that evening. We opted for Lutheran Senior Services, and we signed the paperwork this morning, Tuesday, so our world changed dramatically in less than 36 hours. The kids are coming in this weekend, since sooner is better than later at this point. Betty’s got lots of messages and phone calls, which she relishes, whereas by and large people have been keeping their social distance, even virtually, from me, something I very much appreciate. Yes, I will miss the quarantine. The world is a far, far better place when extroverts keep their distance, at least from me.
There’s a metaphor in one of the hospice pamphlets, which tells the story of a sailing ship moving out of sight over the horizon until it simply disappears. Then, on a far distant shore, beginning as only a speck on the horizon, in time it becomes a welcome vessel arriving safely home. The morale of the hospice metaphor is different from the one that comes to mind for me, which is that there are now, and always shall be, only two stories. Somebody takes a trip. And a stranger comes to town. In whatever time I have left, I expect to be reflecting on this often.
While the Great Cancer Adventure continues, my memoir of that journey, long looking for a place to stop or at last rest, ends here. Here is, after all, as good a spot as any for reflection. There’s shade under a huge oak, a gentle breeze, and in the distance I see a ship sail into sight.