There isn’t a day of the week where I don’t wish that some other fate was unfolding for me. There are moments here and there where my mind can become occupied with various matters, however only for so long, and inevitably I am pulled back into awareness of my situation, which feels at times like a ride I never signed up for and from which cannot seemingly get away. Mental distraction can work wonders, but not for long, especially when one’s thoughts have become, as mine have, increasingly dominated by pain in my right knee. This is the first time in my life to experience what it is to live an extended period with pain.
Various things have unfolded over the past few weeks since my last post. About two weeks back I had a new (for me) kind of biopsy, my first one going into a bone. This took place at Massachusetts General Hospital in downtown Boston.
They gave me the choice ahead of time to have conscious sedation or local anesthetic for the procedure. I chose local anesthetic. This resultantly provided the opportunity to watch and feel the procedure more vividly than otherwise, not especially what I was looking for but once the wheels were in motion I was along for the ride. Generally I will opt to feel things in life instead of being numbed out, but in this case my choice provided me with a chance to see things done to my knee that cannot be unseen afterwards.
This next section not for the squeamish.
They began the procedure with a superficial injection of anesthetic into the side of my knee, followed by a much deeper injection of anesthetic in the same location. Then, laying on my side, I am rolled into and out of a CT scanner, as the specialists used the scan, which I could also see while I lay there, to accurately line up the biopsy route. Then they shoved, with a fair degree of force, a metal tube into my knee, until it more or less grounded out on the side of my femur. That was followed by several more slides in and out of the scanner to confirm they have the right location. More vigorous shoves of the metal tube follow until it is exactly in the right spot. Finally, it is time to take the biopsy, which they do with a drill.
Naturally, as a woodworker with an interest in tools (a trait, I have discovered, curiously not common to all woodworkers), I was keen to see what sort of drill they used. I can report that it is small, and most of it is contained within a plastic bag so I don’t know the make or model. It appears to take hex-shanked tools. Not that I am in the market for such a tool, just curious about it.
I watched as they drilled, and felt my femur vibrate as the drill went into bone. One of the weirder sensations I have experienced, and I can state unequivocally that it is not to be recommended unless you’re into that sort of thing. They drilled three separate times and seemed confident that they had obtained good samples. Apparently there are times when this procedure nets no good samples and must be repeated a second time. That’s a grim prospect to consider. My biopsy went smoothly though and the doctors expressed confidence that it had gone well.
Biopsy description done if you were avoiding that part!
Then came the suspense as I awaited the result of the biopsy. More than a week passed, and while an account of the procedure showed up on my electronic patient record, the pathology report (AKA results), marked as ‘attached’, was not actually present. Apparently the preference of the hospital is to have biopsy results relayed directly by a doctor in person rather than simply posting it up. Fair enough.
Last Wednesday my wife and I got in to see the radiation oncologist at the local hospital where I have been receiving immunotherapy these past few months. A chance to see a new area of the hospital and all that, meet a new doctor.
I had concluded, odd to say, that the best outcome I could hope for at this point is that the cancer in my knee was a metastasis of the same head and neck cancer I already have. Although it is almost ‘unheard of’ for this type of cancer to go to the bone, the biopsy showed that is exactly what has happened.
Because it is head and neck cancer down in my femur, the treatment called for is 5 – 10 daily sessions of radiation. Fortunately, my knee is not degraded to the point where metal reinforcement of the bone is required, which was very good news. It’s better the devil you know than the one you don’t, as they say.
This is so weird now that the good news for me has now become “I have cancer in my knee”. It’s a heck of a lot better than it being a second form of cancer in my knee called a bone sarcoma, a situation which would have likely meant drastic surgical steps would follow. While knee replacements have become far more commonplace these days, I’m under no illusions that it is some sort of a minor procedure and am very happy not to have that placed on my slate. Not yet, at any rate.
Now that we know what it is, the next step is treatment, however, ‘hurry up and wait’ now seems the order of the day. Next week I go in to see the radiation oncologist so they can digitally map my knee and make a plan for targeted treatment. The days are gone where they just blast your entire knee with radiation. Planning will take a few days, and then treatment can begin, likely sometime the week after next. Apparently I can expect to feel pain relief anywhere from 5~10 days after treatment commences.
Pain relief has become my number 1 concern of late. As of three weeks ago I was already starting to wonder how many days further would I be able to walk. I’ve been hobbling about ever since, continuing with the work moving out of my old shop and getting my basement ready, but the other day, American Thanksgiving, was kinda the line. Today it is a notch worse again, and my right knee really cannot take any weight, even for the briefest of moments. I’m seeing that the next couple of weeks are going to be tough sledding. I don’t do well with enforced periods of laying about but there’s not much choice short of having the town come and take me in a palanquin to my activities. Not likely.
As for the pain, while there are some options, I detest opioids and try to avoid them where possible. I don’t really care for how I feel when I am on them, for one thing – and that is something I could put up with for a time if I had to – but far, far worse is what comes to me with the consumption of opioids: severe constipation. If you’ve ever had that happen to you, well, I imagine you will understand my concern about never having that happen again ever for any reason.
So, of late I am maxing out the use of non-prescription pain killers like acetaminophen and ibuprofen. So far they are working, but I can imagine that over time they might drop in effectiveness as this cancer in the bone drags on.
Anyway, I have to find a way to get through what might be two weeks before I obtain significant pain relief. Not a welcome prospect, but it appears the only option at this point.
I have a rare type of a relatively uncommon type of cancer, and it is behaving in ways that have surprised many doctors and confounded the specialists involved. I have no idea what to expect next in this process, save for croaking at some point in the future.
Maybe this has all been a prelude to something more horrific? Will I grow a thing out of my head and die clinging to the tip of a leaf, like this ‘zombie’ ant done in by a fungal colonization?
That would be a cool way to go, and given the unpredictable nature of this disease, one cannot rule out such a fate entirely perhaps. Sorta kidding….
Do I have at last weeks to live? Yes. Do I have months? Probably. Do I have years? Well, that remains a possibility, and that’s about all that can be stated with certainty. I no longer entertain the idea of decades laying ahead. Just being realistic and all.
I remember talking with friends over the question of “what would you do if you had x days/weeks/a year, etc., to live?” It’s a fun topic of conversation at a party. Depending upon where you are at in life, and what you have done, the answer to that question will vary widely among individuals. For me, the challenging aspect is that I don’t have a firm idea as to how long I have left. If a person had a week left, after all, they might do more drastic things than if they had significantly longer to live, I tend to think. How might ones plans change depending upon how much time one imagines one has?
I feel fortunate that I have had a diverse and rich life so far, and when it comes to any sort of ‘bucket list’, there are few items on it, and none requiring tremendous physical condition.
And of course, it’s not just how much time you have on this planet, it’s the quality of that time – how healthy are you, mentally and physically, if not spiritually? What if that is no longer predictable?
I’ve been getting the basement ready to be my new shop through all of this and have a post nearly ready on that topic. All for the moment in this series.
Thank you for visiting and for your interest.
8 Replies to “White to Black (Update 6)”
Painful to read this stuff. Chin up, plan for the future, as we all must, though none of know if we have one.keep your sense of humor and soldier on the best you can. Nature is fascinating, beautiful and brutal. I thought about you today when i was struggling to move a big machine into the shop, and how much we take for granted the abilities that we have and how quickly we can lose them..The human body has remarkable recuperative abilities, and curios humans have great problem solving minds, I hope that they can figure this out and get this under control and you can start to heal.
All the best to you.
I have had to deal with back to back injuries and the associated treatment – but all on a physical recuperation level and the pain could be managed and reduced with any number of therapy treatments. This level of uncertainty and intensity must be a hell I can only associate with my own family members whom have had to deal with cancer. I do wish you all the best and screw the odds , overcome and not just survive but get to live not to fight another day but to live with your closest a full and lengthy time on this amazing speck we all call home.
Sometimes the words just aren’t there my friend. God bless you and your family.You are always in my prayers.
Once again, I offer best wishes for your journey.
If you are in MA, would going with medical marijuana offer an opportunity to substitute the opioids? AFAIK, they are on the patient’s dime where other official medications are paid by insurance.
Prayers my friend. I appreciate the blog and hope it helps not just you but others that may be similarly situated.
Well, Mark Hennebury said everything that l was thinking. Hang in there !
More bad news, not easy going for you… Hopefully the targeted treatment will go well and you can move on to a recovery phase soon. All my thoughts are with you. Pascal.
I know there are many of us out here pulling for you and your family. And I hope that your writing about your trials helps you, in some way, deal with what is happening. Best wishes.