Tag: fatigue

Sleep Study Results: I Don’t Sleep Much!

I met with my Otolaryngologist who conducted the sleep study. Results are negative for restless leg syndrome, sleep apnia, sleep talking, and (most importantly) seizures. That said I know I talk in my sleep; maybe it was the lack of my dear nocturnal interlocutor with whom I imagine I am having conversations (and somethimes actually do…)

What *is* interesting is that I had unusually low levels of REM sleep, and correspondingly I woke up more frequently than “normal”. I woke up 5 to 6 times an hour. Waking up has a special meaning in this context: from what he explained this means I go from deeper (bur not necessaryily REM) sleep to a much lighter conscious or semiconscious state, usually for a matter of seconds.

He asked me repeatedly if I fell asleep during the day, as this level of non-REM sleep must result in high levels of fatigue and day sleeping.

He also explained that all three of my current psychoactive drugs (lexapro, klonopin, and seroquel) all inhibit REM sleep. He wants to repeat the study once I have titrated off these meds.

The doctor was quick to emphasize that it was hard to sleep in the lab setting, and this does have a tendency to skew results towards worse sleep.

The takeaway: I’m not sleeping well, and it is probably because of the meds. That said there may be/certainly are long term neurological and hormonal changes from the Interferon that are hopefully temporary.

The goal: continue titrating of these meds. Will restart that when I meet with my Oncololgical Psychiatrist in January.

Today I feel like I have cancer

There are days I feel like I don’t have cancer. And other days where I definitely feel like I am under treatment. Emotionally and physically exhausted. Fatigued.

Dana Jennings has a nice post about all the kinds of fatigue that come with treatment. I feel like I’ve been through most of these. And today, has been a heavy one.

But the weariness caused by prostate cancer isn’t a constant. It fluctuates from week to week, day to day, even hour to hour. In this nano-age of super-instant gratification, we have lost sense of organic time. Prostate cancer, though, has planted me more firmly in each moment. One of the things that I’ve learned, as I try to pay attention, is that cancer’s paint box includes many shades of fatigue.

inspiring inspiration

We had dinner last night at BH and JW’s. The food was wonderful. They played some great music we had never heard of before. We caught the 1990 hiphop references that are generationally specific.

As we were leaving BH said something to me like “you are my motivation. Whenever I feel overwhelmed or like I have so much on my plate and I think about how much you are going through and how productive you remain.” it was really touching. And affirming.

As per usual I defer much of the credit to my team of  two to three assistants. Without them I would not be able to handle this.

Can’t Sleep

Its late, i’m up.  Tossing and turning in bed.

I was thinking about the blog.  I was thinking about being done with treatment. I was thinking about how I will have to transition to a new state of not-quite-healthy-forever.  All my lesions will go away.  All my dysesthesia will be under control.  I’ll have a rough time coming down off of my Klonopin, and I’ll get my sex drive back.  But I will still be living with a 15 to 30 percent ‘rate of re-ocurrance.’

I don’t want to do this again.

Depending on how you count, next week is halfway through the 12 month treatment, or two weeks later is halfway through the 48 week self-injection sequence.

And the end of February is the one year mark since I was diagnosed.

I don’t want to do this again.

Shattered Bowl

brokenbowl

rubberglove

My hands are so beat up with lesions and cuts, and my skin is so thin and dry, I decided to use gloves to wash the dishes. It seemed prudent and responsible.

The first dish flew out of my hands, and crashed all over the floor. It was one of the big cereal bowls from my set. The set I grew up with. I had to concentrate really hard to think "it is just an object. do not let this make you fall apart. do not cry."

This is the second time today I had to do that. I had the same feeling, and response when I cut my finger, right under the fingernail, on the edge of a cardboard box. Cardboard cuts me! That’s how thin my skin is.

Bad Cold, Infection or Immuno-Supressed?

My cold in the mountains just kept getting worse.  I was burning through kleenex and cough drops, and had lost my voice completely.  I injected my IFN, and in a panicked moment after a sleepless night of chills and with an excruciatingly painful sore throat I decided to fly home a day early.  I made some frantic phone calls to the front desk, the airport shuttle and and the airline.  I made the decision yesterday at 6am, and was on the shuttle to the airport at 730.

By the time I got home it was even worse.  My Dad called and insisted I call my primary care physician and get some antibiotics.  The Dr. on call (it was 9pm on Friday) at first was hesitant to proscribe anything, because he was concerned that I might be immuno-surpressed from the IFN.  I haven’t had any bloodwork in over a month, so I couldn’t tell him for sure.  In the end he wrote for antibiotics and some codeine cough syrup.

The codeine helped immediately, and it seems like the antibiotics are helping today.  I’m feeling better.  Still up and down.  Throat still super painful swallowing.  Yesterday I felt so bad that anything feels better.

I definitely need to go see the dr next week.

I feel the sleepy undertow again

It is kind of amazing to feel the side effects of the Interferon coming on again.  Whereas before they were confusing, surprising, chaotic and alarming, now they are like the return of an old friend.

This morning I had my first “I don’t feel like eating anything in the whole world” feeling.

This evening I felt the sleepy undertow.  I lied down around 6pm, and felt like I could just go to sleep.  I felt like it was going to be so hard just to get myself up.  I had a friend coming for a walk at 630, so I forced myself to get up.

So all my old friends are back.  Fevers, Loss of Appetite, and Exhaustion.  Side effects make constant companions.

I will fight them, though.  I will fight them with water, food, exercise and meditation.

I sound rediculous, right?  I’m just reminding myself.  I guess I don’t really care what I sound like b/c I know it will work.

Reality Check (first day back)

I went in to the studio today.  I was around for a little over 4 hours.  Mostly checking in with people, saying hi, writing email etc.  Between the work effort and the viciously hot-and-humid commute, it was too much.  I came home at 5PM and passed out soon after.  Its 9:30PM and I just woke up.  I’m groggy and basically need to go back to bed.

Interferon reboot: day 11 or day one again

It wasn’t as bad as the first day for sure, but I did have the chills/fever pattern. I was so worried about my liver function being low enough, I didn’t take any preventative Tylenol (as I had been the first two weeks), so I immediately felt the effects even as I was getting up from the infusion chair. And definitely on the way home in the car.

When I got home I took some Tylenol and Advil, and crawled into bed with all the covers and the heating pad. My muscles were on the threshold of contracting and doing the chills/shake thing that Bob told me about. But I didn’t go into shakes. I hugged the heating pad around my chest, slept off the chill for an hour and a half, and woke up sweating with a mild fever feeling. And hungry.

Following my Naturopath’s advice, I ate a lot, exercised a bit (15 minute walk), and am about to go meditate. I feel much more in control mentally. And, of course, I am control minded, shall we say. (Appending the work “freak” just seems unsavory in this context…)