Health Update #25: Irish Goodbyes and a Clinical Trial

The short version 

For those whose impulse is "too long; didn't read" but still want to be in the loop, this section should get you caught up. I emailed a version of this to family members, so some of you may already be familiar with this information. I've joined the clinical trial at the University of Michigan's Rogel Cancer Center. Pre-trial scans (CT and MRI) over the last couple weeks all look good: no new brain metastases and little disease progression with bone mets and other lesions, which was surprising to me. 

Over the next couple weeks, I will be sorted into Group A (control group/standard of care chemotherapy with Docetaxel) or Group B (experimental group/immunotherapy with Keytruda).  I should know right away which group I'm sorted into. I'll start infusions every 21 days beginning on December 19th for up to 2 years, or until the drugs become hypertoxic or stop being effective.

--------------

The long version

It's been one year since the first sign of trouble. I had just come back from a trip to Manhattan with Corrine and Charles to see Pris and Scy for the holiday in New York. 

We had gone to see The Collaboration, Anthony McCarten's Broadway play at the Manhattan Theater Club on West 47th Street about the relationship between Andy Warhol and Jean-Michel Basquiat prior to their joint exhibit in 1985 and shortly before both died. Warhol died in 1987 at 58 (the same age that I am turning this summer) after gallbladder surgery, and Basquiat passed at just 27 in 1988 after a heroin overdose. While watching the performance, I got the sniffles and a runny nose, which were the same symptoms I had the year before when I came down with COVID. This was a pre-opening performance. The next week, on opening day, the play was cancelled due to COVID among the cast.

As soon as got back to Chicago, I took a COVID test and the results were positive for Coronavirus. After a couple days in bed with a mild fever, I felt fine. But later in the week, while attending a holiday work party with Corrine, I began to feel wobbly, and made an Irish exit from the party to wait in the van with my seat reclined. When Corrine found me, she insisted that we go to the Rush Hospital Emergency Room in Oak Park to make sure that I wasn't having another heart attack. After 4 hours of tests and scans and x-rays and observation, they determined that I was not having a heart attack. However, the chest x-ray came back cloudy in the right lower third lobe, and they recommended that I follow up with my primary care physician when I got back to Ludington. This led, over a series of scans and biopsies over multiple months, to a diagnosis of Stage IV non-small cell lung cancer with bone metastasis. I had a walnut-sized spiculated mass in my right lower lobe that was determined during the biopsy to be malignant. I also had bone mets in my right humerus, which caused disintegration of the bone and ultimately required an implant.

After an unsuccessful round of chemotherapy and immunotherapy at the Reed City Cancer Center during June, July and August, I've decided to join a clinical trial at the University of Michigan for Keytruda -- a promising new(ish) immunotherapy treatment. Keytruda successfully made it through Phase I and Phase II trials and is now casting a wider net for FDA approval for lung cancer treatment in a Phase III trial using 700 subjects across the country. 

Appointments over the last few weeks have all gone well. Both the endocrinologist and the physical therapist have said that I look great, and that they wouldn’t know I was ill if they hadn’t seen my chart. I don't know about that, but I'll take it.

The physical therapist said that I’ve had a big jump in progress with my shoulder and my knee seems to be healing rapidly. He left me with a list of home exercises for my shoulder, sacrum, and knee, and I'll do a progress check with him the next time I'm in Ludington, though at this point, I'm not sure when that will be. I plan to stay in Chicago and Ann Arbor for the foreseeable future. I talked with the interventionist radiologist and we’re going to hold off on the sacroplasty and the pain blockers in my knee for a while to see how the healing progresses without surgical intervention.

The endocrinologist gave me some tips on managing my insulin including a new sliding scale, but says that my numbers over the prior two weeks look fantastic. We have a tele-health appointment scheduled for the end of March to see how things are going, and she’s going to take over managing all of my diabetes meds and supplies. The tele-health appointments are a little difficult because I'm supposed to be in Michigan for those appointments. I suppose I could drive to New Buffalo just across the Michigan line for those, or claim my computer is on the fritz and ask for an audio-only appointment by phone. 

U of M initially scheduled my CT scan and MRI for the 27th of December, but after some haranguing from Dr. Q and getting on the cancellation list, I was able to move both up -- the CT scan on 12/1 and the MRI on 12/8. Both have come back looking good. There are no new brain metastases on the MRI, which was the main concern for joining the trial. They don't want subjects who already have strikes against them that might skew their results. From the CT scan there was little disease progression with bone mets and other lesions, which was surprising to me. Over the next couple weeks, I will be sorted into Group A (control group/standard of care chemotherapy with Docetaxel) or Group B (experimental group/immunotherapy with Keytruda). I'll start infusions every 21 days beginning on December 19th for up to 2 years, or until the drugs become hypertoxic or stop being effective. 

I learned today of the recent passing of an old friend, Margherita McWilliams, who died of lung cancer after a 5 year battle. Her experience with cancer, from what she wrote on her GoFundMe page, sounds somewhat similar to mine. Margherita was a lawyer and disability rights advocate and one of the original patrons at Enoch's when I worked there in my late teens. She was a decade or so older than I was, but was always kind to me and treated me with respect. When I decided to abandon my studies and catch a ride with Michael Riggins to California at 19, Margherita hired me to work on her house so that I could have a bit more pocket money for the trip, though within a few hours I was in the ER with a toothpick-sized splinter in my right palm from trying to strip her hardwood floor. She covered my ER bill and paid me $40 for my time anyway.

I've been thinking a lot lately about the memories that each of us carry with us, and what happens to them when they're lost. Would I have remembered Margherita's kindness and those occasional conversations if I hadn't seen that she had passed? What other memories are buried? Each night as I'm falling asleep, I find myself trying to recall some buried memory, something I haven't thought of in a while, just to resurrect it briefly before letting it go. Some distant place or event or person or conversation. Something that no one else is likely to remember. Something that once I'm gone, there's no one left to remember.

At Shane MacGowen's funeral this week, Nick Cave eulogized him with this poem from Raymond Carver, who died of lung cancer at 58. The poem is inscribed on Carver's tombstone.

     Late Fragment

     And did you get what
     you wanted from this life, even so?
     I did.
     And what did you want?
     To call myself beloved, to feel myself
     beloved on the earth. 

Thanks to Corrine for forcing me to go to the ER after feeling ill at her work holiday party, and for the inexhaustible care she's given me over the last year. I'm feeling lucky to have made it one year and looking forward to another year. It's been a wild and rough ride, but family, friends, colleagues, neighbors, health providers, and the occasional stranger have really come through.