Awake again

Mask to hold my head in place during radiation

The fatigue slowing me down last week turned out to be a need for a meds adjustment (and I’ve begun
to think this whole journal should be called Club Meds). In a matter of two days, I was going strong again, and the good news from a CT scan showed real progress in discouraging the tumor. My left hand is still out for repairs, but we live in hope it will return mostly whole before long.

Here are some more excerpts from the journal I've been keeping since returning home from surgery. I would read them aloud in a video blog, which I plan to use for future BITS reviews, but my voice gets a little shaky when talking about this stuff.

3/4/14. Doing taxes, I am having flashbacks as I go through the bills paid and receipts for 2013, thinking of how they are a record of another life, almost another person’s life. I feel a bit of nostalgia, but for a world that seems already not to have existed. The psychologist referred to this as getting used to the “new normal,” a phrase that doesn’t quite do the job, when I puzzle over how I would characterize the old normal. A kind of sleepwalking, maybe. Not delusional, but hardly as sharply focused on the here and now as the day that awaits me this morning.

3/5/14. Tax time has always been a trial, but I do not recommend it under the influence of radiation and chemo. After a couple of hours, the overall effect is to feel stupefied with fatigue. Pushing myself when tired is a habit that refuses to work for me now. Energy is sucked up wading through expense records, in search of deductibles and listing them in columns of numbers that want to swim around on the page. Then I catch myself thinking ahead to next year, up to the ears in this year’s medical bills. Yikes.

Breezy morning walk

I went out for a windy walk with my wife and our dog mid-morning just to feel some signs of life in my body, some measure of lost alertness, though the 40-minute loop through the desert and around the neighborhood school seemed at times eternal, my feet almost dragging.

I find that I still expect my left hand and arm to do their own seeing. It requires constant reminding to watch what I’m trying to do, like unscrewing lids from jars, opening cereal boxes, doors, cell phone. My hand needs my eyes to guide it.  Otherwise it is lost, miles from where I expect it to be, fingers fumbling. I joke sometimes when it flutters away that it wants to be a skylark (cue in Ella Fitzgerald). The “knuckle dragging,” though, nearly drives me to distraction. As, for instance, when I discover the back of my hand somehow coated with food from my dinner plate.

Still, I’m learning that I need to be not just patient but forgiving (surely not a long suit of mine). My tendency to find fault may well be hindering whatever reprogramming, remapping, or repair is going on in the black box of my brain. Some would say that spirit and body are one anyway. When I focus on the disability, I allow myself to become dispirited, which could well invite disembodiment. If so, I doubt that’s a good thing. I still want to be around for a while, and not just as matter taking up space.

Zoe, devoted lap dog on duty

There was just one trip for a medical appointment yesterday, another round of radiation. I’m getting what I assume are added side effects from treatment. My appetite is waning. In the evening I have “hot flashes,” suddenly warm and perspiring. This continues into another night of frequently waking. A lingering headache has me getting up before midnight for Tylenol. 

The fatigue overtaking my wife is more cause for concern. I can read it in her face and movements. B. C. (Before Cancer), I could be more of a help around the house, with cooking, and making runs to the grocery and post office. So much more of that falls to her now. Not to mention being my driver to all my medical appointments. Yesterday, I lent a hand when I could, but it was not like I was making much difference.

The day was not without its measure of comedy, however. Returning home from radiation, while my wife waited in the car with the dog, I went into Vons with a short grocery list. There in the produce section, you would have found me juggling lettuce, as I tried fitting two heads into one of those flimsy plastic bags that defy every effort to use them. I had heads of lettuce flying in all directions and onto the floor, somehow involving a head of romaine I didn’t even want. As John Lennon sang: “I just had to laugh.”

Then at the cashier, I found that I could not remember the PIN for my debit card. That wasn’t so funny. Just bewildering. I had to resort to paying with a credit card. The PIN finally came back to me by the time I returned to the car, my train of thought already advancing to the package of Pepperidge Farm cookies I’d carefully picked off the shelf where I found them across the aisle from the tea that my wife likes. A win-win for both of us. I probably haven’t indulged in Pepperidge Farm cookies for over a decade. One thing about being a cancer patient, you don’t worry as much about either calories or indulgences.

OT homework (Power Putty is the fist in the bean bin)

3/6/14. Another day, another specialist. We drive over to Rancho Mirage for physical and occupational therapy (PT and OT), where I’m told that my left arm problem is not related to lack of strength but coordination. I have a long session with an OT who subscribes, like my radiation oncologist, to the belief that recovering use of my left arm and hand is a matter of reviving the brain’s memories of them. 

After walking me through a dozen or more exercises that involved doing two dissimilar movements with both hands, she sent me home with a glob of “Power Putty” to work with, tubular grips for forks and knives, and a printout of product descriptions from amazon for dictation software. (“But you do want to recover the ability to type, too, don’t you?” she said, apparently confident that it’s still doable.) Plus the idea for a "bean bin," for fishing out little objects buried in dried beans and identifying them with eyes closed (the chess pieces are the hardest). 

Late afternoon, I had another radiation session at the hospital. I found my wife afterward sleeping in the car. At home, she settled into bed, and I made a last stab at getting numbers together for the tax preparer. I will feel a burden removed from my shoulders when that is done. The only escape currently from the new normal has been reading a novel recommended by an online friend, which allows me to slip away into another reality, spun from words that often resonate with unexpected meaning as I make sense of them now from this altered perspective. I realize that in the past I have mentally turned away from illness, death and dying as writers have imagined them in their fiction. Now I pay attention, having some basis for comparison.

LED night light by my side of the bed

Meanwhile, there is in me the yearning to write about what I am reading. Sleep is often sidelined as I lie in the dark composing sentences as if I were sitting at a keyboard. Taxes filed, I can get back to enjoying the reader-writer's life I have come to love, because it gives meaning and purpose to my days and connects me to others. I am lost in a cloud of unknowing and isolation without it.

Previously: Zzzzz