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 a little more than 40,000 words. Having been told that I might be able to enjoy three to five years of good quality of life, there may be a book here yet! This is the most recent entry, originally posted in social media.
The Great Cancer Adventure Continues….
Just having recently returned from a wonderful trip to New Orleans with family and just before we are to leave for our “Time Share” in Zion, IL (actually, guest quarters at the Cancer Treatment Centers of America), my incredible, age-appropriate wife (aka The Champ or The Babe) 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 one), 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 milkshake, 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. 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 only 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. 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, especially 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, his old practice relented. Doing this at CTCA, either coming or going, is just a phone call away, the way they have this setup, but other places try to talk you out of doing this for you. And I had to collect my records in person and deliver them in person. 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 Money. How did we sit by and let a bunch of pirates monetize our healthcare, ruining a perfectly useful system, and pay essentially nothing in taxes on top of everything else? The patients got shafted and those doing this looted the treasury with the aid of corporate lawyers and lobbyists.
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, but 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.
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 in TGCA entries, I was told early on, effectively, this would not be anything 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, a 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 have been earlier in life. Before I found my spiritual path, 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 Play List for a party we might throw either in our little house and small backyard or virtually. There are 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.
Photo © Matthew Friedman