Well, here we are. If you’re reading this, you made it to 2020. While I’m sure for most readers this outcome was hardly in doubt, but for me there were times in 2019 where doubt about getting this far did in fact creep into my mind.
Where we last left off in this unpleasant little tale I had undergone a biopsy of the lower end of my right femur and then about a week later learned the (comparatively) good news that the cancer in my knee was of the same type as I had been hosting elsewhere.
I mentioned the ‘hurry up and wait’ aspect to this, and I will say a bit more about that as it is important.
To recap, my oncologist, after the third time I mentioned it, scheduled the next PET scan to include the area including and below my knees. The people doing the PET scan however seem to have missed that detail on the request form, and scanned, as per usual, only to mid-thigh. This is because virtually nobody gets cancer in their lower limbs, especially those with head/neck cancers, so their habit was to only go mid-thigh. Further, I have learned, since cancers below mid thigh are rare, insurance providers generally are only willing to pay for the scan to mid-thigh.
I could go on in some detail about how dumb I think it is to arrange a health care system around insurance concerns, as everybody needs health care in their lives at some point, but I’ll leave that aside.
So, I see my doctor a week later, he notes that they omitted to do the scan far enough down my leg, so an MRI gets scheduled on my knee. They opt for an MRI for the aforementioned consideration of what insurance will allow, and a PET scan a week after a PET scan was simply not going to get approved it would seem. Then I waited another week for that to take place. Then, once that was done, wait another week waiting to meet with doctors and discuss results.
Continuing, I meet with a team of doctors at Massachusetts General Hospital in Boston. They look at the MRI, and say I need a biopsy to be sure what is what. Then I wait another week until the biopsy can be scheduled. After the biopsy, another week’s wait until I hear the results from an oncologist at my local hospital, and the good news: that it is of the head and neck cancer type I already have, and can be treated with 5 radiation sessions. The radiation doctor tells me that he will also treat a cancerous mass in my upper right glute. This news is greeted the following week by my regular oncologist with a bit of surprise, as he seemed to think that area was not too far along. I’m glad I went with what the radiation oncologist recommended.
THEN I wait another week, until treatment can be scheduled. The radiation sessions are all in the afternoon 5:30pm~6:30pm time slot. During a session I ask the radiation techs if it is normal for them to work late into the evening like this, and they tell me that normally, no, they do a standard work day, but of late demand is so high they are working longer days just to keep pace. And this is a small-town hospital.
My radiation sessions take 5 treatments over 5 days, and I am told I should see some pain relief in the week to follow. That does come to pass, but the fact of the matter is that my knee pain was already bad weeks back when I finally got my oncologist to schedule the PET scan and later MRI. By the time we are into the week of radiation treatment, the pain in my knee and glute has climbed to levels I have not previously experienced. I am glad I was able to just barely cope with it by taking ibuprofen and Tylenol, but if it had been more than a few more days more, I think I would have had to accept the only other option, namely opiods. I’m glad that did not come to pass. It surprises me still that there are so few options for pain control still.
I finished the radiation treatments about two weeks ago, with no apparent side effects. The knee and glute pain have now receded tremendously, but not down to zero. The radiation oncologist says I have lost about 50% of the bone density from the end of my femur. I limp. This would appear to rule out, going forward, such activities as mogul skiing, plyometric jumps, power squats, and so forth. I can live with that, but I’m not confident I will ever be able to run again – you know, with my young son. This prospect saddens me a bit.
Worse though is that my knee feels like glass. I have the fear that if an unexpected load were placed upon it, some sort of drastic injury could result. I think I may have to consider some further interventions in my knee, but I have not as yet met with specialists to discuss the options.
I did go into Boston on New Year’s Eve with my wife to see my oncologist at Dana Farber to discuss what has transpired over 2019. It was very helpful to talk with him. One question was about why the immunotherapy treatments I have been receiving have seemingly had no effect on my knee. It turns out that many agents which work well in soft tissues do not penetrate bone.
Since I have not had chemo in several months now, my bone marrow is going to be up to the task of enduring more chemo, and the “good” news was that there were other chemotherapy agents in the arsenal which we could try, and some of them are unlikely to intensify my existing neuropathy any further. I can’t say I greet the news of possible further chemo treatments with any trace of excitement, rather, dread comes up for me.
My oncologist at Dana Farber did say that there was a possible clinical trial available. He said it wouldn’t hurt to meet with the team doing the trial and see if the trial was a good fit for me. If it went ahead though, it would mean commuting to and from Boston (2 hours each way in good road conditions), which would be a drag.
And we’ll just have to see what the next scan shows. I have an immunotherapy infusion tomorrow, and then sometime next week I think I will have a PET scan, this time one which will go head to toe. These scans, well, my life kinda hinges on each one, so I am finding that I grow more apprehensive each time. Based on that upcoming scan, we can see if there are any other bone metastases, and gauge whether the immunotherapy agent is still doing its job on the lung cancer. If it is doing its job, then the best course will be to continue the current regime. If not, then a new frontier of shit awaits I’m sure.
With the knee and hip stuff, I have been having to spend most of my time on the couch, which is starting to drive me bananas after several weeks. To top it off, my wife and I had a nasty cold for the last two weeks of December. It’s not easy to sit around, feeling like crap with stuff pouring out your nose, and in pain. A day or three is one thing, but weeks on end is another. In the last two days though I am finally climbing out of this cold, so with that a bit of foolish optimism creeps back in as well. Hopefully no more colds will visit for a while.
One of the things about going to Dana Farber is that you will see folks who have some pretty severe conditions. I saw a fellow there who clearly had a head/neck cancer who had lost most of his cheek on the left side of his face, and thus the side of his teeth and jaw were exposed to view, like something out of a Terminator movie. Just a horrific sight that once seen, cannot be easily forgotten. Things like that remind me that my situation, lousy as it is, could be worse. I’m still alive, breathing is clear, and I’m in way less pain than a few weeks back. I still have reason to hope that we can keep on top of this situation going forward.
My next goal, survival-wise, is my birthday in April, where I’ll turn 55. Then it will be my son’s birthday mid-year. This is how I measure time now. Feeling decently optimistic as of today about those next two milestones.
I don’t know how many of you read the recent science news:
“Humans have a maximum natural lifespan of only 38 years, according to researchers, who have discovered a way to estimate how long a species lives based on its DNA.
Scientists at Australia’s national science agency have developed a genetic ‘clock’ computer model that they claim can accurately estimate how long different vertebrates are likely to survive – including both living and extinct species.
Using the human genome, the researchers found that the maximum natural lifespan of humans is 38 years, which matches anthropological estimates of lifespan in early modern humans.”
That’s from the Daily Mail site in the UK.
All things considered, I’ve lived to a ripe old age, and yes, without modern medicine I probably would have been dead long ago, notwithstanding the cancer situation. Not too bad at all – I’m lucky really.
Obviously, with all that has gone on the past couple of months, I have done little to no woodwork. My body might be failing me at this juncture, however my mind remains quite fine thank you. One of my hobbies, something I have been doing steadily since my mid 30s, is the Sunday NY Times crossword. My goal has long been to be able to complete the Times Sunday puzzle, and I have done that, but not very often and certainly not at all reliably. For the past 10 years I have been buying crossword puzzle books which are compendiums of 200 Sunday puzzles each, and working my way through them; this, as an activity I usually do after I get into bed for the night, a 10~15 minute session before the light is turned out. It takes me several years to work my way through a single book, and despite being on the 4th such book now, my completion rate on the puzzles remained stubbornly short of success. Typically I get to the 85% completion mark and then have to look to the answer key. It was getting frustrating and I began to wonder if I was stuck at some sort of natural personal limit. Maybe the Sunday puzzle was beyond me?
Back in October I decided to get an online subscription to the NY Times crossword, as this would give me access to the puzzles from the other days of the week. You see, they graduate the puzzle difficulty as the week progresses, Monday being the easiest and Saturday the hardest. The Sunday puzzle is a special one, as it is larger, but the difficulty level is equal to a Wednesday~Thursday puzzle.
After a couple of weeks getting to learn how things worked on the site, something weird happened: I started being able to solve not just the Sunday puzzle, but puzzles from every day of the week. Once I got rolling, I have just somehow jumped up a level in my solving ability, and my current puzzle solving streak is 41 days in a row. It would actually be over 60 days in a row were it not for a hiccup with a Thursday puzzle back in November. I was able to solve all the clues, but could not arrive at the completion screen. It was the sort of crossword, which shows up only occasionally, where a few particular squares are to be filled with a word, not just a letter. And I had no idea how to type a word into a single square, what is termed entering a ‘Rebus’. So I was briefly defeated, but now do understand how to deal with Rebus insertions, so my streak has continued from there uninterrupted.
I write the above not to brag. I know for some folks, crosswords of the NY Times variety are near-impossible to solve, so my progress may appear a mighty feat, but there are also people out there who can mow through the toughest Saturday puzzle in 10 minutes or less, so it is all relative. While I can solve a Monday puzzle in 10 minutes or less, a Saturday generally takes me an hour or more. One time a Saturday puzzle took me 2-1/2 hours. So, in the big picture, there are certainly folks far better at this than I am.
How to account for the sudden uptick in solving ability? I don’t put it down to any change in me, rather the change that has made it possible is actually the online format itself. Why is this? Well, when you do a crossword on paper, you have a choice to use a pen or pencil. A pencil allows for more tentative guesses at clues to be put in, and you can erase later. I’ve always found this approach just makes a mess, so I have been doing the crossword in pen , and then writing over incorrect entries, again in pen. Yup, makes a mess as well. But what I hadn’t considered was how an incorrect entry kinda became a more difficult thing to get out of your head while you were trying to work out solutions. Every time you looked at the page, it was there in front of you, even if you had overwritten it you could still find it conditioning your thoughts to some extent and it made it harder to see other possibilities.
Maybe I explain this poorly, but with the online solve, they give you the option to ‘use pencil’, so to speak, which means one can enter letters and words in grey rather than black ‘ink’ and change them later. I don’t actually use that feature though, but it is no big deal at all to delete any entry you like and return to looking at blank squares. For me this has allowed the leap in solving ability. The blank slate, as such, means you can more easily begin to consider a wider range of possibilities, and try things out that you probably wouldn’t if you had to write in pencil and erase again.
Funny how a slight shift in how you do a thing can pay a surprising dividend in outcomes. I think the lesson carries forward into other endeavors. If you’ve been working at a skill for along time and seem stuck at a level, then maybe the thing to do is to shift how you go about the practice skill. Maybe it isn’t you after all, but a method you use to develop your skill that holds you back.
Food for thought is all I can offer. YMMV.
All for this time. Hope your 2020 is a good one! I’ve got a post coming up on jointers, and more to come on milling machines too. Until then, be well.