I was beginning to think that somehow – magically – I had escaped the worst of the fatigue side effects expected from my radiation. And then Monday happened and it hit me like a sledgehammer. I thought that was the day in my life I was most tired – and then Tuesday, Wednesday, Thursday and Friday proved me wrong as I got more tired each day. I have been exhausted and sleep a good part of each day. I know this is “normal” and that the rest is doing my body good, but it is not fun to have no energy and after doing the smallest thing, to feel like I have run a marathon.
Brigitte wrote me with some words of wisdom about my fatigue that I hope I can incorporate into my life after treatment: “My yoga instructor tonight talked about the importance of giving ourselves permission to rest and I immediately thought of you. She said that acknowledging that we need a break is an act of humility and courage, because everybody around us is busy with something and we are expected to be so, too.”
I started the week by going to my urologist, Dr. Katz, who prescribed medication to help with my constant urination, especially at night and with the remaining burning sensation even 3 weeks after the removal of the catheter. On my way to Dr. Katz’s office, I decided to take the subway and when I arrived at the station at Penn Station to take the uptown E, the platform was packed! It freaked me out being around so many people, which in the past would have meant nothing to me. My intention was to transfer to the 6 train at 53rd and Lexington, but I just could not take the crowd, so got off at 53rd and 5th Avenue and took a taxi the rest of the journey.
When I got home, I slept for an hour before heading to radiation where Carlos met me. Wound up having to wait 45 minutes before they called me – usually they are on time and the wait annoyed and exhausted me. After again returning home, I slept for another hour, had a bite to eat and slept another 2 hours before finally going upstairs to bed around 9:30 PM, then slept until 8 AM.
I had an acupuncture session as always on Wednesday. Each time that Viktor puts in that first needle, I have a very strong sensation in my groin. Viktor says that is good, the center of my body reacting well.
Other events this week: Tuesday and Friday, Nancy accompanied me to radiation and Thursday it was Stewart. Wednesday, Susan was supposed to do so, but I got there early after PT so was done before Susan arrived. I also had a much needed massage for 90 minutes thanks to Gib and David.
I’ve been thinking about loss this week, both personal and the terrible and senseless losses associated with the Orlando shootings. Here are a few things that have visited me at some point. Some of these things may be permanent losses and some I know are only temporary, some are trivial and some more profound, but they are losses nonetheless:
- I mourn the loss of my hair. I know this is a result of the radiation and that it will grow back, but I miss my hair, even if not that noticeable with my nearly shaved head right now.
- I mourn the loss of my Fire Island walks. I used to love walking a few hours each day on the beach to Water Island and back and sometimes an afternoon stroll to the end of the Pines. Now if I make it to the end of the Pines once a weekend, I am lucky!
- I mourn the loss of my boundless energy – enough to wake up early and be on the go all day – the gym, meeting friends for meals, theater etc… For now, I am lucky if during any given day, I can do one of these things and still feel okay. And during meals, it is too often hard for me to fully participate in the conversation.without getting tired or overwhelmed. I mostly prefer to be alone for now.
- I mourn the loss of my excellent health, now living from doctor to doctor. I can’t yet go back to taking my vitamins at least until radiation is over and maybe even until chemo is over which is 5 months away. While I can’t say for sure the vitamins were the source of my energy and good health, I do believe they helped a lot. For now, I take more medication than my 96-year old dad.
- I mourn the loss/absence of some friendships. I have not lost friends per se and if anything friends have been there for me in ways that astonish me with their love and support, but I don’t have the energy to be able to accept all of the offers to help and sustain friendships which makes me feel sad.
- I mourn the loss of my “youth.” I know I am no longer a young man, but pre-tumors, I somehow felt young and I no longer do; this has aged me a good 10 years in just a few months: my stamina, strength and body along with my self image have changed and I wonder how long it will take to regain some of this.
Geoff wrote to remind me that June 5th was National Cancer Survivors Day, a celebration for those who have survived, an inspiration for those recently diagnosed, a gathering of support for families, and an outreach to the community. It’s hard for me to fully take in that I, too, am a cancer survivor, so I need to celebrate in spite of my losses.
In spite of mourning my losses, with all of the love enveloping me these days, I am reminded of the final, short poem written by Raymond Carver to his beloved Tess Gallagher. They were both American poets.
And did you get what you wanted from this life, even so?
And what did you want?
To call myself beloved, to feel myself beloved on the earth.