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Archive for September, 2012

Now that I’m about two weeks post-radiation treatment, it’s time to start balancing issues of fatigue with all the good things in life.

“Tired” is a little word that people tend not hear with any interest. Dorothy has been running interference for me in the last week or two, and she kindly tells people that I’m really tired and just not up to visitors or even extended phone calls at times, much less going to large group activities. So just as human nature can be, people hear “Dan’s tired” and they apparently then subconsciously say to themselves, “well, I’m tired too—so what?”

I worry that it’s coming across as an excuse not to interact with people: No, I am not Blanche Dubois having a spell. I am FATIGUED in the clinical sense.

Maybe Dorothy and I should start announcing my fatigue with a flourish to emphasize that I’m not just “tired”: think Michael Cain’s Alfred character in the Batman trilogy, firmly announcing “Mr Maryon is faTIGued at the moment and cannot be disturbed.”

To add to the confusion, I am still alternating periods of busy thinking and a certain level of physical energy with the flat-on-my-back-eyes-closed fatigue. Dexamethasone is a confusing master in this arena. I take it first thing in the morning. It replaces the adrenal-produced hormone cortisol, which naturally increases first thing in the morning to wake you up and then fades off by the evening so you can go to sleep. But dexamethasone doesn’t exactly follow the natural flow of cortisol during the day, because my sleep at night occurs in two-hour segments that usually require some kind of pharmaceutical intervention to get me back to sleep. Five hours a night is about average, and it’s just not enough.

My average day in the last couple of weeks cycles up and down in random and weird ways. I try to anticipate when I’ve pushed myself a bit too much, and then find a quiet place to close my eyes, even for 10 minutes. Usually on weekends, I have times when I get over-enthused about a project or activity and then pay for it with an hour-long nap.

When that happens, I just have to announce that I’m down for a while. Can’t predict it, won’t apologize for it. Yes, it makes for disappointment all around, but this is not the kind of “tired” that you can will your way out of. It’s a combination of bone-deep exhaustion, muscles like over-cooked pasta, fuzzy thinking, and general listlessness. You have to experience it to understand.

My best comparison is to when I had mono at the age of 33. And I hope Dorothy doesn’t mind if I bring up one of our better moments as a couple. It was the middle of summer, I had flu symptoms that weren’t going away, but the last thing I would have guessed was mono. I finally saw my doctor, who checked me over and ordered several tests. While waiting for the diagnosis, I was home on a Saturday morning, just stuck in my bed, and Dorothy scolded me into getting outside to mow the lawn. She basically said, you’ve just got a cold, don’t be lazy, get out and do something! So I dragged myself outside and pushed that lawn mower around in a daze. A few days later the doctor told me it was mono, with signs that my liver had been exposed to some kind of hepatitis at some point. I was ready to exact my revenge for that lawn-mowing incident. But I was too tired to care. And Dorothy felt really, really bad about the whole thing.

As much as I would like to be able to give advance schedules for when I’m available and perked up, I can’t. I have to play with what energy levels I have hour by hour. I save up everything I can for work hours so I can keep a regular schedule, with occasional lunch-break trips to a quiet spot where I can close my eyes and find a short moment where something in my brain resets and I feel back on track. I schedule weekend and evening events cautiously, trying to anticipate getting a little sleep beforehand. It usually works.

But really, really, there’s no predicting and it’s NOTHING PERSONAL. Dorothy is dealing with this unpredictability quite gracefully. We try to plan what we can, but she understands when I have to say, “Sorry, I have to go lie down for a while.”

The best option would be to just check out completely for a while. Wish I could, and maybe I will have to if things get any worse. But in the meantime, folks, I’m just doing my best with my faTIGue.

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Having finished my series of whole-brain radiation treatments, we are now waiting. We, meaning me and Dorothy and our children, and whoever else is troubled by the whole thing. Most treatment modalities come with waiting, but radiation waiting is the most elusive and maddening.

The simplified version of what Dr. C told us about the process is two and a half weeks of treatment (few side effects) followed a week or two later by a wall of fatigue (maybe) that could last a month or two (who knows?) and then gradually slide into the possibility of general, long-term memory or cognitive problems (probability unknown). Hair will fall about two weeks after beginning treatment (check) and there’s possible skin dryness and burning on the scalp (eh, not so much).

Why am I not bound up in anxiety? Dexamethasone helps. As previously described, it’s my new happy drug that’s sent me into an energetic, what-me-worry mindset. Also, Dr. V has been a solid support. He phoned me the day after I got the MRI results and started with “I just want to scream!” In that call and in our next in-person visit, he was so straightforward and supportive, walking me past the panic into “this is just a treatment, people do it all the time, it’s not game over.” His calm response was very influential on my reactions.

The reality is, radiation as a treatment is a slow roll of the dice. Radiation breaks DNA in fast-growing cells, which prevents them from duplicating themselves and thus eventually dying off without creating new tumor cells. This takes time, because the cells even after being radiated can live for a while. They don’t all die off at once, so there’s no moment at which they suddenly fade away. And, it’s not necessarily a given that all cells will be damaged enough to not continue dividing.

It’s a gradual process that isn’t easy to track. With prostate cancer cells, PSA is the generally used method to track growth or cell death. The confusing thing is that healthy cells produce PSA, dying cells might produce even more PSA (not sure where I heard that), and then the PSA itself can linger in the blood for a time. That’s a lot of variables, so the numbers just don’t tell much of a story. We hope that a new circulating tumor cell test (CTC) may provide a better indicator of progress. This test actually counts the number of prostate cancer cells found in a blood sample (I’m curious about how exactly they filter out the cells in the test), which can indicate how actively the little boogers are floating around looking for a new nesting location.

For now, I’ve still got approximately the same physical complaints that got me into that MRI tube, plus more fatigue. So we wait for that to change, but it’s just not useful to run another scan yet. In a month or so, maybe. In the meantime, lots of deep breathing and mindfulness and rest are what keep me sane.

For the curious, here’s what the radiation treatment looks like: I would go in to a room with a big external beam machine, lay down on a little table thing, and the techs would hold my head in place with a plastic mask.

They’d then exit, and for about two minutes the machine would rotate around my head, buzzing and hitting me with what looked like blue light through my closed eyes. Not very complicated from my perspective.

And the cool thing is I now have a handy Halloween costume: a creepy plastic mask.

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