Archive for the ‘dexamethasone’ Category

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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It’s been only 16 days since Dorothy and I were told about my brain metastases. It would be somewhat true to say that those 16 days have been like a mini-lifetime. But it is also true that those days have collapsed into one long present moment, from which I would like to separate myself but can’t.

The first thing Dr. S (my Salt Lake oncologist) did, after breaking the news, was call in a prescription of dexamethasone for me to start immediately. With the possibility of tumors pressing against the brain and a hint that some fluid was building up, the dex helps reduce inflammation and edema, and so it was important to get going with it.

Being a corticosteroid drug like prednisone, I figured I was in for a wild ride with the dex. Big understatement. I was started on a “standard” dose of 8 mg twice a day, which as it turns out is approximately equivalent to 10 times the amount of prednisone I was currently on. My weekend before starting radiation therapy was a blur. That drug wired my thinking patterns to overdrive and alternately kept me buzzed and exhausted. I’d wake in the middle of the night and not be able to sleep, laying wide-eyed in bed for hours on end.

I dropped the dose after the weekend and have been trying to find a manageable dosage that lets me sleep (with a little help from a sleep drug, after my mid-night wakeup). But my mental and physical cycle over a full day continues to be goofy: take the dex first thing in the morning, have energy and mental buzz into the afternoon, take a little time to crash and hopefully nap in late afternoon, then have a somewhat normal evening with some of the mental buzz again. Fall asleep, wake up 4-6 hours later, take a little Ambien, hopefully get 2 more hours sleep. And repeat.

The part that is baffling to me is how dexamethasone messes wth cognition and memory, and with basic personality traits. There are some crazy things going on with brain chemistry that I wish I understood. On the higher dose, I found myself losing any sense of the immediate past. I’d float through the day pointed firmly in a forward direction, hardly remembering what just happened or what I’d done in the last while. Oddly, this has given me a taste of what it might be like to be an extravert. I’m off the charts introverted in most ways (if you go by the temperament descriptions in tests like the Myers-Briggs Type Indicator) and now I wonder how much of that is connected to thinking about past events, such as reminding myself what I did or said in a situation and mulling it over.

Even now, on a more manageable dose, I do not give consideration to the past. I remain pointed forward, focused on what is happening right now. The past just flows on behind me like the proverbial river of consciousness, and I do not look over my shoulder. Really, after 16 days, I’ve come to this point? Like I said, I don’t know if this is a mini-lifetime or a big open space in the eternal Present.

One benefit, if you want to call it that, is that these couple of weeks have very unexpectedly become productive and focused. At work, I just get stuff done and then wish I had more to do. At home, I’ve been manic about finishing projects, stuff I’ve put off literally for years in some cases. If I see something that needs doing, I just step in and do it until it’s done. No other plans, no time for decision-making–it’s just there to be done, and I do it.

And all kinds of things are falling into place in the most unlikely ways. For months Dorothy and I have been talking about whether to get the house in shape and put it on the market. Instead, we just did a lightning-fast refinance that will save us a bunch of money every month. That all happened in about 10 days. Just before that, we printed out the will and living will documents I started two years ago, and had them notarized. At the same time, we decided to get a new car I’ve been thinking about since early summer. With the mortgage savings I can make the car payments every month. We are still painting and repairing the house, too, with help from Rachel and Jase. It looks beautiful with a fresh coat of warm tan paint on the main floor.

Yeah, I know, this sounds like the drug has pushed me into mania. But so many other things are happening like a row of dominoes. We’ve wanted to finish our back yard landscaping but have been stuck because the empty lots next door have never been developed. Yesterday, a backhoe showed up and the first of two foundation holes was dug, after seven years’ waiting. And as I was getting ready for the car deal, I had planned to trade in my old car. Not necessary: Kate and Tim’s old Saturn lost its clutch ten days ago; they have no resources to buy a new/used car, so, my old car is now theirs.

How little we really understand about brain chemistry: I think I’m experiencing things for the first time in my life that are just normal to other people. I do worry about crossing the line from euphoria into mania and then psychosis (well, Wikipedia says all of those are potential side effects of dexamethasone…). But I think Dorothy likes the modified me. I’m cleaning out all kinds of junk from our basement storage and getting all kinds of things organized.

As we talked about today’s victory (we gave away a headboard and bed frame we’ve been storing for, oh, a decade) we got into our game of morbid chicken. I kidded Dorothy that it looks like I’m on a crash course of putting all my affairs in order, just in case… which would not be unusual given that I have tumors in the brain. But I’ll be really, really bugged if that’s the case. The reason we joke about it is that Dr. V, when he told us to get an MRI, just casually mentioned that with brain tumors (as unlikely as they are for prostate cancer), if you don’t get them treated, well, you could just end up in a coma or something. Or Something. Yes, our imaginations went wild with that one.

Oh, so about the game of morbid chicken: it’s where we take turns talking about our worst fears related to cancer and dying. You get a point for making the other person cry, two points if you both cry, and three if you both laugh and cry. Then the bell sounds and it’s time for the next round in the game. That’s how we deal with this craziness. I got a point today when I said that if I were to suddenly lapse into a coma, Dorothy may absolutely not tell people that I knew the end was coming and had to work everything out. It’s just not true. I don’t have any inclination that this is more than another sharp twist in the treatment road. People get whole brain radiation all the time and it works well for many of them. People do survive brain mets. Some people don’t. Brain mets are not a good thing to have, but if we get stuck in disaster thinking about them, we lose perspective. And right now, perspective is what keeps me centered. I think it’s safe to say that I’m focused on the eternal present moment, with a drug that’s messing with my mind just enough to enable that little taste of enlightened living.

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