Tag Archives: cancer

Sunday is Pill Day

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I may have mentioned before that I have cancer. Barring a medical breakthrough, I will always have cancer. There is no remission in my future, just control.

This means I have a lot of different pills to take, at particular times of day. So I have one of these:

It’s a weekly pill planner. During chemotherapy, I had the primary medicines to fight the cancer (roughly four of them), the medicines to fight the side effects of the primary medicines (variable from 4 to 8, depending on how I was responding to the medicines), and the medicines to fight the side effects of the medicines that were to fight the side effects of the primary medicines.

And also the pills I was already taking for other stuff.

Not all of the medicines listed above are in pill form, but you can see that things were pretty complicated. Now that chemo is over, the pill regimen is more routine, but it is still an important part of every Sunday afternoon that the Official Sweetie and I sit down with a paper bag filled with pill bottles, open up all the little doors in the pill planner, and fill it up.

For a while things were complicated enough that it really did take two people to work out the rules for each day and get the right meds teed up. Now, it’s not so complicated that a single person could do it.

Except for the part when all the little doors are closed, the pills ready for another week, and Official Sweetie and I exchange a high-five and a kiss, and say, “another week.” Another week survived, is what we mean. It’s a moment of thankfulness, a moment of celebration. Another week of life. It’s like having 52 birthdays a year.

Here’s to another week, my friends.

6

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Today I got the answer, which was… no answer

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I have some stories from the last few months of chemotherapy. I intend to tell them here someday. Maybe even soon. That first day I learned what “Red Man Syndrome” is. It’s pretty rare, apparently. I have marks on my skin, slowly fading, that are echoes of the burns inflicted on my veins. I have thoughts, now, about hospital food.

But today was, I thought, the beginning of the next chapter. I sat down with my oncologist to discuss life after chemo. I expected he would schedule another scan to measure the success of the drugs, as well as a shift in regimen to fit my current circumstances. Instead what I got was much less… page-turny.

There is one number I live and die by, and that’s PSA. That number is very low now, and apparently as long as it stays low, I’m just coasting. I will never not have cancer. Remission is not to be hoped for. But if that one number stays low, then I may have a chance to die from something else instead, preferably a long time from now.

I was expecting today to hear “Here’s our plan of action!” and instead I heard, “there will be no action for the foreseeable future.” That’s actually a GOOD THING (I keep telling myself). Much better than “shit, I guess we better try something else.” On the other hand, the fact that there will be no full-body scan recognizes that even though we know there is cancer all over the place, exactly where doesn’t matter. That information is not actionable.

The number, PSA, will be measured every month for at least the next year, when I go in for my bone-strengthening goo (the goo slows the spread of cancer in the bones, as well as shoring up damage from the chemo). After that, the measurement might be quarterly.

It’s going to be very difficult for me to not obsess over the number (the measurement on the blood sample taken this morning STILL ISN’T IN YET), but perhaps it will be even harder for the Official Sweetie of Muddled Ramblings and Half-Baked Ideas. The number will be good until it isn’t, and we can drive ourselves crazy anticipating that ominous measurement, or we can just get used to the fact I have cancer and always will. The barbarians are in the forest, and it is only a matter of time until they rush the gate again. All we can do is watch closely and be prepared for when that happens.

The chemicals I ingest each day are getting nicknames: “Abbies” and whatnot. This is my life now, being gently awoken each morning by Official Sweetie to take my Abbies while my stomach is empty. Filling the pill planner each week (more about that later). Going to work like nothing ever happened. Maybe even writing again. Who knows?

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My Life-Threatening Illness is Frighteningly Ordinary

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After delays and frustrations, the results of the PET scan have reached the proper experts, and now I have a clearer idea what I am facing. There is an irony here – after two weeks of delays, accompanied by gnashing of teeth and rending of garments, the conclusion is… carry on.

The cancer has traveled from my prostate, in a pattern familiar to all who follow that sort of thing. From a medical point of view, I have a very boring sort of cancer

Prostate cancer cells gorge on testosterone, so step one is shutting down the supply. In my head, while this would shut down the cancer at the source, it seemed like wherever the cancer had spread a prostate-specific treatment would have no effect. Happily for me, that was not correct. Wherever the cancer spread, it brought that hunger with it.

The doctor who has been running the show up to now is a no-nonsense sort of guy, and his approach is entirely unemotional. Here’s the data, here’s what happens next. My disease is entirely routine and the path I am on is well-worn. Just another day at the office for the cancer crew.

That works pretty well for me, but the Official Sweetie has now been with me in a few meetings on the subject of my mortal peril and would prefer that emotional health be at least acknowledged in a conversation like this. As medicine and engineering continue to merge (which is a good thing), the emotional gap is likely to get more pronounced.

(I have been contacted by my insurance company by an oncology nurse who oozed empathy over the phone, and is pointing me to support resources, and other helpful stuff — so perhaps Official Sweetie isn’t the only one to realize this.)

So. I have been on a roller coaster, and now I get to the point where the ticket guy is waiting, and he’s telling me that the ride was flat all along. My legs are still wobbly, but sure enough the ground feels firmer now.

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Through the Magic Donut

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Thursday, after some delays I don’t fully understand, I spent an afternoon in the realm of science fiction. I was given a dose of a chemical from a heavily-shielded syringe, then put in the Radioactive Person Quiet Room for an hour, then my body was passed three times through the hole in a large, whispering machine.

The technology is amazing, and I will enjoy telling you about that. The experience of the technology is a bobsled ride down into your own head. I will tell you about that too, but it won’t be as fun.

As I describe the procedure to people, I get excited. The procedure is pretty amazing; the stuff of science fiction only two decades ago. Starting with the question “how can we detect where cancer cells are inside someone without cutting them open?” you quickly get to a place that has been a long time coming.

Medicine, you see, for the last century or so, has actually become a science. Cancer is now treated by the medical equivalent of engineers. Big Physics had its day, with massive particle accelerators and whatnot, but the priority has changed to using what Big Physics yielded to improve lives directly.

Take antimatter, for instance. Here’s the sequence of steps that led to PET scans:

  1. We need to find concentrations of cancerous cells.
  2. Cancerous cells are in overdrive, and consume lots of energy.
  3. If we can find cells consuming abnormal amounts of energy, we can find the cancer.
  4. Hungry cells demand lots of energetic molecules like glucose.
  5. Follow the money: if we can trace where the glucose is going, we can find the hungry cells. But how do we track the glucose?
  6. We can detect the source of gamma radiation very well, right through any intervening tissue. So if we had gamma-emitting glucose, we could follow it around.
  7. Hello, Fluorine-18. It is an unstable isotope, but its magic is that when it decays, it emits a positron. Antimatter! That positron won’t get far before it runs into an ordinary electron, and sure as you can say e = mc2, the m of the two particles becomes e, a gamma photon that can be detected.

After I waited for the tracer to make its way through my body, I was called into the Chamber of the Magic Donut. It is a room that is terribly ordinary — linoleum floor, fluorescent lights, standard drop ceiling — a surprisingly drab setting for the machine that filled the middle of the room. The machine itself, I didn’t stop to inspect when I got there. I had other thnings on my mind.

I thought perhaps there would be a bin where I could put my metallic belongings, but instead the Guardian gestured to a chair. “You can leave your stuff there.” I was a little bothered by the informality of it, but I put my stuff on the chair. I guess I was expecting something more planned – people will need a place to put their belongings. Or perhaps I was expecting something entirely more ceremonial.

I had been told to dress warmly, so I had worn sandals so I could put on winter socks when the time came.

“Don’t take off your shoes,” the very nice man said. He was large, and a little hunched over, and reminded me of a mythical creature tasked with guarding the sanctity of the chamber. “Your sweat is radioactive, and if you get it on the floor it could throw off the measurements.” It was not as cold in there as I had been led to believe, so I forwent the socks, and climbed up onto the Great Tongue Depressor – the platform that would pass me though the Hole of the Magic Donut.

So, loaded with 18L I lay down and allowed the Guardian of the Bridge to strap my hands to my side. I took a breath and closed my eyes.

The first two passes were quick; the first was just so the machines could measure my position. The second was a CT scan. Pf. That science fiction is old news now. Both those scans were over in a couple of minutes. Then came the PET.

It started from my thighs and worked its way up. By now many people had reminded me that it was important to hold still. So I did.

Another fun fact you might not know about me is that I have a skin condition on my face that can get itchy. It was only a matter of minutes before an itch on my face, unscratched, grew into something else. Like something was hollowing out a part of my cheek and replacing it with an ache designed purely to annoy.

But I held still, and every few minutes I would be moved a few inches. It was impossible not to think about where I was inside the donut and what the data it was gathering at that moment might mean. My pelvis, where there is certainly cancer – but has it reached bone? Then the gut, then the thorax (does my breathing make those images less reliable?) and finally the brain.

Shit. Please not the brain.

Each time the Tongue Depressor moved me within the Magic Donut, I had nothing better to do than imagine what it was seeing at that moment, and what that might mean. Imagination is a curse, sometimes.

There were at least two people in the control room; they probably shared knowing glances as the scan came to life in front of them, deciding when the image was good enough to move to the next slice.

But that was Thursday, and the weekend arrived before the radiologist could sign an assessment, so I have been waiting, less or less patiently. Tomorrow I hope I will learn the results, and see what the next phase of Science Fiction holds in store for me.

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Turns out I have Cancer

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Not sure where to start with this, so I’ll just start talking. A year ago I was only a few weeks of commuting away from crossing the magical ten-thousand-mile mark on my workhorse bike. Now, I am barely any closer. After a ride, I would lose two days to a seized-up back.

After one ride, as I lay in bed with the heating pad underneath me, I reached around to adjust the pad and a muscle near my shoulder blade seized up into a knot you could see through my shirt.

I could not sit, I could not stand, I could not lie down. I would seek brief comfort on my hands and knees, my face pressed into the carpet, then pace the length of the house. After a sequence like that I would check the time and see that I was ten minutes closer to my appointment with the doctor. It didn’t help that parts of my right arm were numb as well.

It remains to be seen, but that agony may have saved my life.

That afternoon, I went to the doctor. She looked me over and prescribed me a larger dose of the medicine I was already taking. To make sure my body could handle it, she ordered some blood work. That was all well and good, but “I just want to be unconscious,” I told her. She relented and gave me an injection of a stronger variant of the anti-inflammatory she had already prescribed.

It helped some, I guess, but did not deliver me from disfiguring pain. (Literally – somewhere in there x-rays were ordered for my upper chest, and the images showed my spine was being pulled significantly to the right. Thus the numbness.)

Still, “muscle spasm” was the diagnosis. It happens.

A couple of days later, I got a call from the doctor. Could I come in for more blood work? The first results were fairly alarming. Back I went.

The results of those tests were apparently even more alarming. The back-of-envelope calculation they used said my kidneys were functioning at about 10%. Were I not lucid and upbeat, emergency dialysis was a likely recommendation.

I’m pretty sure I’ve left out some steps above, and I’m absolutely certain that I have left out the help and support not only of the Official Sweetie of Muddled Ramblings and Half-Baked Ideas, but other family and friends nearby. The story doesn’t even get this far without them.

Multiple doctors followed, and after I stopped taking the pain meds, the lingering question was, “what’s with those kidneys, anyway?” Tests and specialists ensued.

I had heard enough stories about slow urine that I had thought little of it. A fairly normal old man thing. Something I would mention in my next checkup. But an enlarged prostate can put pressure on the kidneys, so that became an organ of interest.

And here is a Very Important Thing You Should Know: An enlarged prostate can be caused by exactly two things — infection or cancer. Infection can be cleared up; cancer is not so straightforward but the sooner you act the better. Men: if your pee is slow, don’t fuck around. See a doctor.

My prostate, it turns out, is chock-full of cancer. I’m not even sure why I have the fucking thing — it seems like a janky solution to a fairly simple engineering problem — but I have a prostate and it’s busy cooking up tiny little cellular death seeds to send through my body. The million-dollar question now is, where have those seeds taken root? It will be almost a month before I lie very still for a PET scan (the P is for positron – antimatter!) and then probably a few days after that to hear from a professional what the scan revealed. I would rather not wait that long.

But if you’re going to choose a cancer, prostate would be a good choice. Medicine has long focussed on Man Problems, and on top of that the prostate is an organ easily accessed by medication. I have good insurance, though to be honest I feel a little queasy about that. Everyone should have good insurance. I reserve the right to rant about that further at a later time.

By a couple of metrics, I’m pretty lucky. Lucky the cancer has been detected, lucky I have access to science-fiction-class care, lucky I can afford that care. The next month of uncertainty is going to be a grind. After that, I don’t even want to guess. Some therapy will follow that will be designed to destroy the bad cells in my body, while minimizing harm to the good cells. I have very consciously avoided reading the internet about these things. There will be plenty of time to sweat that shit later.

What seemed at first like a rough journey turned out to be the boarding platform for a train to the unknown. I’ll keep you all informed of my progress, if I feel like it.

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See You Tomorrow, Rick

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Those were the last words I said to my father-in-law. He was surrounded by concerned daughters hoping to find the optimum pillow configuration for his knees — so much attention — so I just kind of called it in from the hallway. His eyes moved to acknowledge me.

That was yesterday, and I did not see him today, and I won’t ever again.

I believed it when I said it. Mostly. He was going downhill fast, but I had created a moment in my head, just for us, tomorrow, without four daughters pestering us, when we could just sip beers for a bit. Not talking. I’m not a talker in times like that, I have learned.

I imagined a time of peace, for him, for me. Saturday night the sons-in-law had gathered around the bed and Rick just wanted a beer. I failed that night, though maybe Rick did too: He could have had all the beer he wanted if he only leaned on someone. That night I could have, should have, said, “it’s going to hurt like a motherfucker but I can prop you up and you can lean back against me and have your beer.” Rick didn’t want to be propped up. He didn’t want to lean on anyone. But I think right then I could have talked him into it, and I think he would have been glad I did.

A pretty little alternate history.

After that night a new bed was installed in the house, one that could allow him to sit up, and one of his final memories is being carried from his bed to another room, and I know he hated every moment of it. But no one wanted him on that magical bed more than I did. Lacking the cloud of daughters, I would have hoisted him up and carried him myself. I was a tiny incorrect minority, who thought his life might yet go on awhile and this action might make him more comfortable for the duration. People linger beyond expectations, sometimes, when they want to. Sometimes even when they don’t.

And I thought that maybe, in a quiet moment, one without words, I could snap open a cold Budweiser for Rick, ease it into his hands, then open one for myself, and say goodbye the way I know how. But that is not what happened, so I will simply say again,

See you tomorrow, Rick.

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