12. The Guinea Pig, Day 33

Today I’m sharing a poem that I read in a book gifted to me by a dear friend. The book, The Poetry of Impermanence, Mindfulness and Joy, contains over one hundred poems. This one poem stuck out. I come back to it every few days.

If You Knew, by Ellen Bass

What if you knew you’d be the last
to touch someone?
If you were taking tickets, for example,
at the theater, tearing them,
giving back the ragged stubs,
you might take care to touch that palm,
brush your fingertips
along the life line’s crease.

When a man pulls his wheeled suitcase
too slowly through the airport, when
the car in front of me doesn’t signal,
when the clerk at the pharmacy
won’t say Thank you, I don’t remember
they’re going to die.

A friend told me she’d been with her aunt.
They’d just had lunch and the waiter,
a young gay man with plum black eyes,
joked as he served the coffee, kissed
her aunt’s powdered cheek when they left.
Then they walked half a block and her aunt
dropped dead on the sidewalk.

How close does the dragon’s spume
have to come? How wide does the crack
in heaven have to split?
What would people look like
if we could see them as they are,
soaked in honey, stung and swollen,
reckless, pinned against time?

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It’s clearly about death, and life, and seizing the day. It get’s me thinking about the fragility of life. Every time I read the poem I well up with emotion. When I try to read it out loud I have to pause after every line and gain my composure. Go ahead and try reading it aloud with someone else to listen. Let me know if it touches you. Do you have a poem that does that to you? If so, please share it. And let me know how it makes you feel.

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I had another T injection five days ago at DFCI. They preemptively gave me a steroid pill along with an anti-nausea pill before the injection to reduce my reaction to the shot. I was twenty four hours post injection and things seemed fine. I was optimistic. Forty eight hours out I started to experience pain, but not as intense as last time. It was bad, but the previous reaction was really really, really painful. The T injection feeds the cancer. Yes this is an unusual approach but remember it’s part of the study I’m in. T injections for two months, followed by Xtandi pills for two months. The pain is most significant in the areas where the cancer is. Up until very recently I chose not to know where those areas were. I imagined that knowing all the spots in my bones and lymph would place an image in my mind that would be hard to stop thinking about. When the first injection was rapidly absorbed through the bloodstream the cancer ate it up. The cancer flares up. And all of a sudden you know where the cancer is because it hurts. Pain in my collarbones, sternum, scapula, left hip, neck and lower ribs on the right side.

I tried to ride it out. I focused my mind on the pain. I concentrated on it. I wanted to know more about it. I used my meditation skills to research the pain. I understood that the pain, like everything else in the manifest world, is impermanent. It rises, then eventually dissipates, either by medication, meditation, death, or maybe miraculously just goes away. By Sunday night I took a Tramadol just to try to sleep. It did work, but by Monday I was still down and out, but not incapacitated like the previous shot had left me. A phone call to the study team at DFCI led to the option of taking a steroid for three days and approval to take an anti-nausea med as needed. I was also constipated like last time.

This is a great time to delve into the meds and their side effects, which took time to sort out. T injections cause constipation. If you take Tramadol for the pain it causes constipation as well. So right off the bat you’re having to deal with stool softeners and laxatives. And when you’re constipated you don’t feel hungry so you don’t eat, as there is nowhere for the food to go. Then there is the nausea, probably from the pain affecting the nervous system, so an anti-nausea med helps that, but still no appetite. Then the steroids give you an increase in appetite, but you know deep down there is nowhere for the food to go. It becomes a delicate balance of being with the pain or not, eating or not, taking various meds or not, and trying to find the right amount of stool softeners and laxatives for the body. Fun, fun, fun.

I have been pretty much home-bound since December 6th. I do get out briefly for a walk or quick trip into town. I have had the good fortune of friends visiting me at home. We talk about music, meds, death, meditation, life, and the experiences this life has brought me. I have never been closer to my wife, Laurie. When I was lying on the sofa writhing in pain she went out during a snowstorm and got a Christmas tree, dragged it up the stairs, through the porch, and decorated it. We still have it up.

We have had to clear most of our schedule in early December. I started to feel better mid-December and was able to do some work remotely. I’ve also had visits from my bandmates. One at a time they visit and we’ve started to record our music right here at our home. I spiffed up the studio room downstairs with a new rug, some new hardware and have been spending a lot of time working on our original music.

And my family, wow. The cancer has certainly brought us closer together than we’ve ever been. One sister sends a text every day and even drove with us to one appointment. We do FaceTime with her grandchild. My brother calls and sometimes drives up and we hang out and do lunch. I keep my mother up to date with many phone calls during the week. She is going on eighty-seven and still works part-time and drives. On the way to DFCI one day, I stopped to visit her. I asked how she was doing dealing with her son having terminal cancer. It caught her off guard. She really appreciated the question and the time we spent together talking about it. Another sister is busy praying for us. One Sunday on a phone call with her, she told me she was driving to Cambridge, Ma. after church to hand out Dunkin’ gift cards to homeless people. Wow, what a family. And to those who texted or FB messaged me – thank you. Hearing your stories about cancer or meditation or life in general has lifted my spirits.

Needless to say some of our travel plans have been put on hold. My life revolves around injections and appointments at DFCI. The team there is wonderful and really helpful with everything, keeping me on track with the study, managing side-effects quickly, and helping me plan when I’m able to travel. So, the Bali trip is still on for March for Nyepi. I will have an injection the previous week. But I plan to go, treating myself and Laurie with business class seats that fully recline. Hey, you can’t take it with you 🙂

My meditation practice has been challenging. I still shoot for every day, but reactions to the treatments can put a damper on it. These days I focus on impermanence, cause and effect, and mindfulness. Oh yeah, and the pain. Focus on the pain. My teacher says the pain is a gift. I’m still trying to accept that and I’m open to exploring it and understanding it. I also try to do self-reiki practice every day. One of the best things for healing is rest and good breathing, so I focus on that too. My bicycle riding days are over as is my running. Weight training has also taken a back seat for the time being.

Reflection on this disease is also part of the journey. It still amazes me that here I am, almost four years after a stage IV-b terminal diagnosis, still thriving. I am grateful for that every day. When I was diagnosed I had no symptoms, and the cancer was already widespread in my skeletal and lymph systems. Scans over the past four years show that it has not really spread. Hmmm. I’ll take it.

In parting today I want to thank you for reading and following along. Please feel free to reach out. I love hearing from you. Take care.