11. The Guinea Pig, Day 4

When the dust settles
Then we’ll visit
And hug
But not too hard
We can bring along our tears
And make it rain
And see what grows
But the dust never settles
So we should say goodbye
Every time we part ways

That short poem just flowed today. Right out, with no effort. I had a brief conversation last year with a client who was a new acquaintance through cancer and yoga and music. Their cancer had returned and they wanted to get together “when the dust settles”. I thought it was a splendid idea. We could trade stories, what we’re eating, like cancer patients do. We’ll compare notes on what tools for healing we’re using, what’s working for us. I looked forward to it, I couldn’t wait. And just like that, they were gone. No warning, sepsis shock. No chance to get together. no chance to say goodbye. The dust will never settle.

Anyway, on to day 4 of being a guinea pig.

I’ve been terrified of wheelchairs since I was a young boy of three or four. I had to stay overnight in the hospital for dehydration. When it was time to leave and they insisted that everyone who leaves the hospital, leaves in a wheelchair, I screamed. No one could comprehend why. But I figured it out, albeit a little later. There was a neighborhood kid, much older, probably in his teens. He lived around the corner, not too close, not too far. We drove past his house every day. When the weather was tolerable his parents would wheel him onto the front porch. And he sat and stared at the passing cars. We’d see him most days, sometimes staring, sometimes waving. At three or fours years old it seemed scary. His name was Ziggy, probably a nickname. Even at my young age I knew I didn’t want to be him. Wheelchairs horrified me. I left the hospital screaming and defiant. But I survived.

Close your eyes. Take a deep breath in, filling up the lungs completely. Exhale and empty the lungs completely.

Fast forward sixty-two years. I arrived back at DFCI (Dana Farber Cancer Institute) yesterday. I had a terrible reaction to first injection last Friday. The pain that arrived twenty-four hours later was debilitating. The injection was supposed to fire the cancer back up, that’s part of the study, but not pain like this. Then in late January they’ll switch me to the medicine which, in theory and laboratory tests, kills cancer cells. After another twenty-fours hours with short, thirty-minute pockets of sleeping, we called back to DFCI. I also let them know I was nauseous which is unusual as it’s not chemo I’m taking. And I’ve eaten hardly anything in three days, and that is not like me 🙂

They ordered up some painkillers which didn’t really help much. And some anti-nausea meds, which really didn’t help either.

Close your eyes. Take a deep breath in, filling up the lungs completely. Exhale and empty the lungs completely.

We were summoned down the DFCI and as I entered my first appointment assistant saw that I could barely walk and offered a wheelchair. This time I gladly accepted the wheelchair, not screaming or resisting. It was a welcome relief. I was pushed around for the rest of the day, mostly by my wife Laurie. I am so grateful. The team listened to my story. They told me the pain shouldn’t be that bad, so somethings up. They listed to my concerns about the nausea, the not eating, the not sleeping, the constipation. I went for some blood tests. I was sent to infusion therapy where I received an iv of a steroid, an anti-nausea med, and some much needed fluids. I immediately felt better. Like within a half-hour. Next we’re off to off to x-ray. Again I want to mention the supremely professional and pleasant attitude of staff. I stopped and wondered to myself “Who is behind what I’m experiencing here? Who created and maintains the culture that is so different from most other healthcare systems I’ve experienced.” I will research it for us.

X-rays showed a pretty large blockage in about two-thirds of my colon. Looked like poop they said. I think that’s good news. I was prescribed more steroids and ordered to consume the stuff for colonoscopies, to clean out the blockage. That’s what I’ve been working on today, clearing out my colon. And clearing my schedule. And responding to messages. And making plans to get together with folks who want to visit, and not and not wait until the dust settles.

Close your eyes. Take a deep breath in, filling up the lungs completely. Exhale and empty the lungs completely.

I’m feeling way better today than I felt over the weekend. But I’m feeling worse that I did six months ago. The pain has arrived. And I’m here for it. And I’m here for you too. That’s what this blog is all about. It started as a travel blog in 2017, four years before my diagnosis. Now it has morphed into a self-reflection in the face of a terminal illness blog. And it was not my idea or intention. My Urologist urged me to share my journey, and I acted on it. We are both consistent meditators and thought that sharing my story may help others understand who we really are, how we got here, and where we’re headed. But I would much rather be writing about travel. Heck, maybe I will, I’ve got so many great memories of all the places we’ve been to in the past seven years, I could probably squeeze out a few more stories. Love you guys. Live your life. Mindfully. And remember, the dust will never settle.