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.ReplyDelete
About 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.ReplyDelete
I so well remember Lana's treatments. The tiredness and weakness. I'm thinking of you my friend. Each day.ReplyDelete
Your 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.ReplyDelete
Here 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.Delete
Hi 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.ReplyDelete
I 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.Delete
Ron, 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"ReplyDelete
A 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.ReplyDelete
Sending warm thoughts from Korea. Hang in there, Ron.ReplyDelete
Respect to you, man. My thoughts are with you as you beat this thing...and you're gonna do it.ReplyDelete
Reads 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. PattiReplyDelete
Another 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 writingReplyDelete
To 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.ReplyDelete
Greetings 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! MichaelReplyDelete
A 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.
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