14. The Guinea Pig, Day 138.

As we squeezed into the elevator at The Inn at Longwood Medical, right beside DFCI, I couldn’t help but strike up a conversation. It’s just a Massachusetts habit I guess. I turned to the two women across from us and asked where they were visiting from. They were from out of town, so naturally, my next question followed with a knowing nod – “Here for medical?” They calmly confirmed, sharing that one of their husbands was undergoing treatment. Just as the elevator doors opened to the 7th floor, our shared destination, we all paused in the hallway for a while. We listened intently as they opened up about their own battles with cancer. One woman, diagnosed with breast cancer and carrying the BRCA gene, recounted her cancer, her double mastectomy, hysterectomy, and subsequent recurrence. Her sister, also with the BRCA gene, had proactively undergone the same surgeries. There they stood, facing us with unwavering strength and direct eye contact, sharing their stories with such bravery. We eventually said goodnight and went our separate ways, but their resilience and openness left a lasting impression.

Earlier we were out for a walk and we passed a mother and her young son on the street. The child, with his bald head, was clearly here for cancer treatment, and it just hit me hard. I’m usually okay talking to older patients, striking up conversations in elevators and waiting rooms, sometimes seeing familiar faces from back home. But when I see a child with that bald cancer head, something breaks. It’s the thought of a five or seven-year-old going through that, and it just overwhelms me. I get caught up in the unfairness, the sheer horror of it. Then I catch myself, realizing my emotions are spiraling because I’m fixating on the child’s pain, and the parent’s pain, and I try to pull back. I even try to think something positively ridiculous, like maybe because he’s getting the new Nintendo Switch 2 since he has cancer. He there’s a great idea for donation to the children’s ward! We kept walking towards Fenway, where a game was on for tonight and a band was playing, the streets buzzing with Red Sox fanatics. Boston was alive with spring, full of energy. We walked slowly for miles, had a quick dinner at Time Out food hall, and headed back to our room. I thought about the two women in the elevator, their incredible strength in sharing their stories, and I remembered to let go of the image of that little boy. I was dealing with my own pain, too, a physical ache that’s been with me on and off since I started the study last December.

Before heading to Bali, I had a T injection, and for five glorious days, I was pain-free. I actually thought I was in the clear. Usually, the pain flares up within a day or two after the shot, and we end up managing it with pain meds and steroids, which, as you know, come with their own baggage – constipation, and more. When I got to Bali, I felt significantly better, just a bit slower than usual. But there was still this nagging pain in the background, only noticeable when I touched the area or if something pressed against it. Bali gave me a lot of time to think about my time in this study, to really compare how I felt after the injections versus how I felt when I was taking the pills. I felt really good in February and March on the pills. But the study hadn’t shown any improvement or even stabilization of the cancer since early December. So, after much thought in Bali, I made the decision to come off the study.

When I returned home I called DFCI and let them know my decision. They would pull me from the study and put me on the Xtandi cancer pills for the time being. At this point in my journey with this disease I am running out of options. When these pills stop working I’ll most likely be injected with radioactive isotopes. Sounds interesting. Not sure if I’ll be radioactive though 🙂

Within a couple of days my pain returned, this time in the right hip/femur. I did some stretching and took some Tylenol and it seemed to dissipate in a few days. The next week pain returned to my left hip/femur where I’ve had it a few times before. This time I took Tramadol for a few days and that helped a bit. By Thursday I was out of patience. We called down to DFCI and they ordered a course of steroids. Today I feel well enough to write.

When any pain first arrives I lie down and try to relax and concentrate on it. My teacher has told me a few times over the past few months that the pain is a gift. It doesn’t feel like a gift when you cant sleep and it’s 3 AM. It’s taken me a while to accept and understand this. Intense pain reminds us that this physical body of ours is impermanent, it will not last forever. It’s simple, but to understand it and accept it is challenging. Or at least we perceive it as being challenging because we evaluate the pain as being unpleasant. And we don’t like unpleasant things. But there it is. A closer look shows that our perception of the pain and our evaluation of the pain as being unpleasant are both impermanent. Perceptions and evaluations of the pain will eventually dissipate, simply because they have risen in our field of consciousness, they have a beginning and end. Everything does. Even our thoughts about how bad the pain is, or how and when we’re going to die, rises then eventually subsides. No thought lasts forever. It’s the attachment of our mind to the thought(s) in process. and the longer we dwell on them, that creates the chaos – the fear, the dread, the anxiety, the depression, the trauma. But, detaching the mind from the thought process takes practice. Lots of practice. It leads to better mental health which is very important when facing death. We want to die happy and peacefully and we can’t do that if we’re scared, or anxious, or depressed. So I practice taking the pain, in small doses, and just be with it. Concentrate on it. What can it teach me? I’m just a beginner here on this path, this is a still practice for me.

I have felt good enough to continue to write and produce music. Here’s a link to my latest single, called “Searching”. I hope you love it as much as I do. It’s a departure from my most recent releases and quite different from the band’s music as well. Enjoy. And reach out if you feel called. https://davidbreen.bandcamp.com/track/searching