Chemo caps |
Here are more excerpts from the
journal I’ve been keeping since brain surgery in January.
3/1/14. Yesterday was a little hard. Radiation went smoothly, and
afterward two nurses gave me some aloe lotion for my scalp, which will soon
need it as I grow bald. The usual quick drive home turned into an hour-long ordeal as the
roads across the valley were closed for flash flooding (a massive Pacific storm
coming ashore along the length and breadth of California). Poor traffic
management had the streets jammed with tailbacks at the lights.
Purple orchid blooming in side yard |
Waiting at a Carl’s Jr. for fast
food to simplify the rest of the day, I got a call from the home security
company reporting that an alarm had gone off at the house, and the police had been
called. As it turned out, there had been no break-in. The stormy weather while
we were gone had tripped the system.
All of us, the dog included, were
exhausted as the day then wound down, and I could hardly stay awake until 9
p.m. to take my chemo meds for the night. I have begun to respect the fatigue
that comes with treatment, and how quickly one burns through reserves of
energy.
This morning, the first order of
business was loading up the pill dispenser with 7 days of meds. My last attempt
at this got me no more than 4 days before I hit the wall with confusion and exasperation.
Today, after a full night’s sleep and a carefully written user-friendly chart,
I did much better.
Desert walk in the morning |
3/2/14. I had been warned that I might show some “OCD” behavior on
these meds, and there was a surge of that when we discovered that sometime during
the day I had misplaced the TV remote. Both of us hunting for it turned up
no sign of it, and it was hard letting go of that—although I did find a pair of
reading glasses that had disappeared for the past couple of days. I hate loose
ends, though there will no doubt be lots more of them. The remote will
eventually turn up in some weird place. The obsessive searching, I see, is a
way of deflecting other anxieties, when simple denial of them is not working
for me.
3/3/14. Yesterday we drove to Costco for what used to be a regular
shopping trip of mine, replenishing the cupboards and refrigerator with 1-2
weeks of produce and meals. The larder being depleted after a month of being
mostly housebound, I easily filled a cart. We arrived a little late to beat the
unexpected crowd, (“Canadians,” the cashier speculated at checkout), so
navigating the aisles got to resembling a contact sport. Leaving the cart and
carrying things to it—my usual tactic in a crowded store—found me trying to
hold onto too much stuff for my newly weak and clumsy grasp.
Back outside, I
lost track of where we had parked the car, and I was holding up traffic as I
manhandled the cart across the uneven surface of the lot. Unloading the cart
into the car was another challenge. I think of Andre Dubus, who wrote after
being hit by a car and disabled, that it took 3 times as long to accomplish
anything in a wheelchair. The slow down is less for me, but I have a deeper
appreciation for what he meant.
Sky over Palm Springs, at the car wash |
3/4/14. I find the first strands of hair in my watch cap today.
Short, thin, silvery strands. I joke that no one will mistake me for Sean
Connery now. Yesterday was about starting the second week of radiation, an appointment
with the psychologist on the oncology staff, having a talk with the
nutritionist, and meeting with the radiation oncologist. Afterward, we were
buoyed up by the interactions with people who seemed to perceive us as
resourceful and competent.
The psychologist was a bit textbooky and mostly
reaffirmed what we knew already. She made one observation that helped me make
sense of the occasional emotional roller coaster ride I find myself on—that
trauma to the right side of the brain lessens the ability to control emotions,
and they slip out more easily.
We then had a sit-down with the
radiation oncologist, who seemed delighted by my condition and revealed that
being otherwise in good health meant to her at least that I would benefit from
higher doses of radiation. She also encouraged me to get started with physical
therapy, in the meantime squeezing a ball in my left hand. Using it steadily
will remind my brain that I have a left hand and revive the memories of how to
use it. We returned home in better spirits than when we left, but it was still
a tiring day, and I was nodding off in the middle of a movie when we decided to
turn in at 8:30.
We still have not found the remote.
This austere journal is powerful as it records your passage through a new and sometimes bleak world, but a world with some blessings too. These things are rarely shared, and are a treasure for those of us privileged to read your web log. Very best to you.
ReplyDeleteAbout six months ago my wife, Judy, and I went to a wig shop where a very nice woman helped Judy through the process of choosing a wig. She also offered to use the clippers to remove Judy's remaining hair. When that was done, Judy put on the wig and wore it home. It wasn't as traumatic for her as it is for some people, but it wasn't fun, either. She's off that particular chemo now and on another regimen, so her hair's growing back. It's very different from what it used to be, and we're eager to see what it will look like when it gets longer. We'll be thinking of you as you go through this.
ReplyDeleteI so well remember Lana's treatments. The tiredness and weakness. I'm thinking of you my friend. Each day.
ReplyDeleteYour blog gives me strength to carry on when at times I feel so down. Though I cannot relate to your illness, in many other things you strike a chord with me - today the pill dispenser is one and the remote control another. I am suffering from early onset Alzheimers and things like filling my tablet dispenser sometimes seem beyond me, especially as you say, round about day 4 when I hit the same confusion (and exasperation) you write of. The pills all begin to look the same and my now shaky hands often result in spills. In future when it happens I must try and remember your selfless sharing of your experiences and try to cease my "cussin' & blindin'" at the hand dealt to me. I know from reading your blog I have not been dealt the worst hand around the table. Thank you for sharing.
ReplyDeleteHere we call those black moods "cursing the darkness." The unspoken reminder to light a candle instead helps keep from getting sucked into the negativity. Thanks for your thoughts. It is good to have company on this road.
DeleteHi Ron and also Henry Wood. Thanks for your comments and thoughts. We all want to live long lives but sometimes getting older can be a real pain. I never expected to make it into my seventies but here I am and I can see some symptoms that might mean bad news for me in the future.
ReplyDeleteI hope you both can recover but don't worry, many of us will be following you guys down this path and you will have plenty of company.
Growing old, as an old nun once told me, is not for sissies.
DeleteRon, each time I read your journal I promise myself that I'll stop grumbling about the small hiccups in my life. You're very brave, Ron.
ReplyDelete"Growing old, as an old nun once told me, is not for sissies"
ReplyDeleteA lady in her ninety-ninth year told me: "If I'd known it would be like this I wouldn't have bothered."
I like your photos. I've always thought bald-headed men rather sexy looking.
ReplyDeleteSending warm thoughts from Korea. Hang in there, Ron.
ReplyDeleteRespect to you, man. My thoughts are with you as you beat this thing...and you're gonna do it.
ReplyDeleteReads so beautifully, Ron, that we know almost all of you functions very well. Since we never can find things, that part would not be unusual. Keep writing, keep trucking. Love. Patti
ReplyDeleteAnother thought provoking read, makes me appreciate the little things as I age. I am way ahead of you on one thing - the hair thing, mine fell out on its own about 15 years back, and the remote is always in the cushions at our house, unless my grandson was here, then ---. Keep writing
ReplyDeleteTo misquote Dickens, "Old Age is the best of times and the worst of times." And W. C. Fields said, "If I knew I was going to live this long, I would've taken better care of my self". And I say, "Old age is the time to forget things and learn another." Wishing you all the best, Ron.
ReplyDeleteGreetings and support from France Ron. Blind rage at the missing remote has been with me since my twenties...I am hoping it will get better when the kids are all gone, but I know it won't. Keep writing and we'll keep reading! Michael
ReplyDeleteRon,
ReplyDeleteA quick note isn't nearly enough to say that you are an amazing man and your perseverance is both impressive and expected. As noted above, your pictures are lovely and, in conjunction with your diary, poignant.
Keep on keeping on. Being able to wear a beanie that looks like a berry is worthy of celebrating at any time. My thoughts are with you and your family.
xo,
Carla