Newbie Here, Gleason 9+

Do you guys keep a journal?

I tried, but gave up. I wanted to keep track of my doctor visits, my weight, and any side effects of the radiation and Eligard injections. I wanted to fill the white space with witty remarks and gift them out to friends as thank-you’s for their cards, herbal teas, and chocolates. But I’m too tired and distracted to keep records, although I bought a leather-bound journal of hand-fashioned vellum from Macedonia. It even has a tight brass snap that opens with a pop. The pages inside are thick as cloth and blank except for three words on page one. Three words I hear too often. Three words I hate the most: YOU GOT THIS.

I ain’t got this. I don’t want this. I’m not up to the challenge. I don’t have clarity of thought or even certainty about next month. I don’t know if I’ll become incontinent from the radiation or change into a chubby eunuch from these God-awful hormone treatments.

I don’t want a thumbs up or a like. I don’t want to lose muscle mass, sweat with hot flashes, or grow perky breasts.

“Don’t worry about the breasts,” a lesbian friend of mine told me. She offered to teach me how to “bind them” to look more manly. Holy Moly! Is there a corset in my future?

Friends and family do come up with the darnedest and most wonderful ideas, don’t they? I’m grateful for their good intentions. This cancer must be uncomfortable and awkward for them, too. I thank them for their loving kindness. And forgive them for saying “You got this.”

Part of me wants to put a stake through that solitary line in my journal, but I keep it to remind me of the possible.

A poet friend of mine, Shirley, is sending me the gift of a poem each day of my radiation. I thought you guys might like these lines from “French Chocolates” by Ellen Bass.


“...But for the ill, for you with nerves that fire like a rusted-out burner on an old barbecue, with bones brittle as spun sugar,
with a migraine hammering like a blacksmith

in the flaming forge of your skull,
may you be spared from friends who say,
God doesn't give you more than you can handle
and ask what gifts being sick has brought you.

May they just keep their mouths shut
and give you French chocolates and daffodils
and maybe a small, original Matisse,
say, open Window, Collioure, so you can look out
at the boats floating on the dappled pink water.”

"French Chocolates" by Ellen Bass from Like a Beggar. © Copper Canyon Press, 2014.

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DX Dec 2017 at Age 68
PSA at DX 6.5, Biopsy: 3 of 12 pos. G5+5, 10%; G5+4, 15%; G3+5, 35% MRI and CT no evidence of metastases ADT Eligard, quarterly, start Feb 2018
3-26-18 IMRT Virginia Hospital Center
CLL in remission after targeted chemo

Explorer - Here are 3 better words WE LOVE HOPE!!



Larry

Agree about embracing the hope, though it takes a lot of work and maybe an occasional slap in the face to stay positive. As for that middle seat to Paris, I’ve found that Cheetos, conversation, and sleep help the hours go by.

On Week Two of Radiation I promise to stay positive. At least to try harder. As I stretched out on the table today, I closed my eyes to focus two thoughts. One image for each two minutes of treatment: Starbucks and a meadow of wild flowers.

For years I avoided the dark-hearted Starbucks roast until I took a chance. Hesitant. Awkward as a newbie, one day after a long absence I walked inside with friends to choose a different item on the menu. I discovered that almond milk and a spritz of caramel transformed the bitter brew into a sweet cappuccino. Now I’m hooked. There’s a lesson in my cup, somewhere.

And that meadow. In the waiting room a few minutes earlier, I had re-read a poem that my friend Shirley sent me. Beannacht/Blessing by John O'Donohue.

…And when your eyes
freeze behind
the grey window
and the ghost of loss
gets in to you,
may a flock of colours,
indigo, red, green,
and azure blue
come to awaken in you
a meadow of delight.

So, I’m losing a prostate forever. Losing body parts comes with age. I’ll get over it. When I get off this table, I want to “awaken” to “a flock of colours” like sunflower yellow and primrose crimson in “a meadow of delight.” I can choose the colors. So can you.

Short-term urgency is often an SE of radiation. That said, I don't recall mine being that severe. Do you have weekly meetings with your RO? I'd certainly ask. As I recall NSAIDs also help, but I'd check that first.

I shall now contemplate your poem...

When does ADT kick in? I talked to my RO and urologist about my lack of side effects 10 weeks after my first Eligard injection. I’m not complaining, but I’m concerned that I’ve had no hot flashes or decrease in libido. Really no side effects at all. Question: When did you guys start to see a change in your body and libido?

My RO and urologist both congratulated me on the lack of side effects. The urologist told me that some guys “just power through” the injections with minimal side effects. Still, I’m concerned that I may be resistant to Eligard, although both docs assure me this doesn’t happen. The urologist said he’d check my testosterone and PSA levels before my next injection. We have to be our own advocates. So, I’m going to ask my general practitioner to draw blood to check both levels at my upcoming office visit.

Here’s the poem I’ll be thinking about on the table this Week Three of Radiation treatments. I did laugh at the unintended (I'm guessing) double meaning of his last line. His message still works for us. Keep singing. Here’s the poem by Wendell Berry.

When the Great Mystery calls out your soul...
It may be that when we no longer know what to do,
we have come to our real work
and when we no longer know which way to go,
we have begun our real journey.

The mind that is not baffled is not employed.
The impeded stream is the one that sings.

-----------------------------------------
DX Dec 2017 at Age 68
PSA at DX 6.5, Biopsy: 3 of 12 pos. G5+5, 10%; G5+4, 15%; G3+5, 35%
MRI and CT no evidence of metastases
ADT Eligard, quarterly, start Feb 2018
3-26-18 IMRT Virginia Hospital Center
CLL in remission after targeted chemo

I’m feeling grumpy today, so excuse me. Week Three of Radiation Treatment brought my first side effects. Trouble getting started (urinary hesitancy), a feeling that my bladder was not completely emptying, a weak urine stream, peeing six times a night, and a burning sensation. I got all five at once. From what I’ve read, these symptoms are common and treatable. Still, I waited a day before telling the radiation oncology nurse. Dumb on my part. When I did tell her, she moved quickly. A urine test showed no infection. I’m on Flomax, a six-day pack of steroids to reduce inflammation, and AZO to remedy the burning.

AZO.

Never heard of it before. You’ll find it in the feminine hygiene section just below the Vagisil Intimate Vaginal Wash and above the Tampax shelves. Great. It’s not enough that we face the indignities of emasculating hormonal injections, but now we have to browse the women’s aisle. Wouldn’t you know it, a shelf stocker was standing right in front of the product. He asked if I needed help. “Only looking,” I stupidly said. I passed him by and came back ten minutes later. Thankfully, no one had to announce over the PA system, “Price check on AZO, urinary pain relief, maximum strength.”

That brings me to Eligard. What a misnomer for an emasculating hormone therapy drug. Somebody in pharmaceutical marketing had an attack of over-the-top sarcasm.

Eligard sounds more like an exclusive line of men’s silk underpants or neon-colored jock straps. Maybe even a paisley Depends that’s ruggedly hand-stitched for the active, sophisticated male. Or a man bra to gently bind any newly popped, full-figured breasts that this awful drug might bring on.

We need a contest to give Eligard a more fitting name. What about "Hard-off." "Die-bido." Or my favorite, "Eunuchie." Any better names?

Food for thought, but gotta go. Time to begin Week Four of Radiation.

Post Edited (Explorer54) : 4/16/2018 9:52:24 AM (GMT-6)

Thanks for the reply. Glad you’re starting to recover. I’m forcing myself to go to the gym five days a week to lift weights and do a half hour on the treadmill. So far I don’t have much fatigue but I’m only four weeks into radiation and two months after first injection. Waiting for the next shoe to drop. Trying to stay positive!

Thanks guys for the useful information and your inspiration to stay optimistic.

Question: Has anyone noted shortness of breath post-radiation and during treatment with Lupron? I’ve read that cardiovascular events are more likely with Lupron. For me, walking up even one flight of steps and inclines often gets me winded. Finally, after six months of this symptom, I went to the cardiologist, who performed every test in the book on me, from an echocardiogram to a stress test and arterial tests. Thankfully, nothing much to report, so far. Yesterday I had a CT scan of my lungs and expect the results in two days. Fingers crossed. Wouldn’t it be ironic if a heart attack takes me out and not my prostate cancer or chronic lymphocytic leukemia.

Seven months ago I finished the last of 44 radiation treatments for my Gleason score 10-prostate cancer. My new annoying and unpleasant companions became a daily dose of Flomax and a quarterly injection of Lupron. Although I’ve become a sleepy eunuch, I consider myself lucky and am grateful for the modest side effects. An 18-month vacation from sex is a price I’m willing to pay for continued life. No hot flashes. No man boobs. No more squirts or accidents. Except for long travels, the Depends stay on a bottom shelf in the closet. No bone metastases. Daily exercise at the gym help to combat the side effects of muscle wastage, brittle bones, and weight gain. So far, I’ve only added two pounds around the stomach. The daily fatigue is manageable with a nap. Depression is managed with Wellbutrin and daily meditation. Best of all, the PSA is undetectable.
So, after seven months post-radiation, time for reflection. I’m trying to focus only on life, family, and friends, and avoid thoughts about sickness or cancer.

That’s a tall order. A few days ago a good friend and mentor died from non-small cell lung cancer after a three-month battle. While he had the strength in the hospice, he posted on Facebook. Here is his last post:

ROUND 10 --and it's 'down for the count". The oncologists, pulmonologists, the nursing staff, the thorathic surgeon & the overwhelming support of so many family friends. I love you all. Thanks for being here. The hospice care has all been wonderful.

In return for his honesty, he received loving and emotional comments. Strange, isn’t it, how in this age of social media, we can read our own eulogies, peek at the funeral home guest book, and gain hope while so close to death.

I’m focusing on the hope and love.

Excuse my ramblings. I suppose it’s the Lupron talking.