Since being diagnosed in September 2017 with a type of cancer that, according to my initial oncologist, “is hard to treat and likes to come back”, I’ve been keeping a cancer survivor journal, “The Great Cancer Adventure”, which now stands at about 45,000 words. Having been told that I might be able to enjoy three-five years of good quality of life, there might be a book here yet!  This is the most recent entry, originally posted on social media.

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4/13/2020

On our way to the Cancer Treatment Center of America (CTCA) location an hour north of Chicago, 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 mask and since these surgical masks are at a premium, we’ll also be given a “special container” to keep it for the next 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 Nurse Practitioner 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 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 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 epidemic?  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 her and such tools.  Probably sleeping under a bridge.  Or hiding in some pathetic man cave, watching Fox News.

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.

Postscript:  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 coronavirus screening test done while I was there at the GI Clinic.  A nurse inserted a full-length two-by-four deep into each nostril and twisted it, back and forth, up and down, and in and out, for a while.  Then left these planks 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 would 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, 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.

There are 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 on hospital property.  Guest Quarters North is only a couple of blocks away, and they have a shuttle that runs three times an hour.

The Great Cancer Adventure continues….

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Photo by Engin Akyurt