Last weekend on Fire Island was with Antonio only – and it was wonderful! Much as I love having people around, there is something very special and relaxing being in a totally quiet environment without any pressure to have to engage in conversation or to “entertain.” That was likely the last time we will have the house to ourselves for a long time! It was a good couple of days to advance in my healing with one day of beautiful weather on the beach and one day of mediocre weather, rain and fog, just staying home.
The effects of the radiation are more evident now: I have lost hair around the areas where the beams are focused and I continue to be much more tired than normal, though Antonio reminds me that I am way more active than I realize or admit to: heading each day to radiation, twice a week to physical therapy, weekly to acupuncture, weekly to psychotherapy (more about that later) and meeting friends for breakfast, lunch and dinner – not everyday, but several times a week. I do intersperse these activities with listening to brain.fm, usually twice daily for 30 minutes at a time and add an occasional nap, up to an hour each time. One night this week, after Antonio gave me an hour massage from 9:30 – 10:30 PM, I slept 10 hours. That was healing, to have that relaxing, extra long sleep time.
This week, I was accompanied to radiation again by Maie, then twice by Susan and by Ed. I always enjoy our conversations though if I am honest, sometimes I just don’t feel like talking much and would rather be chilling to brain.fm. In one of my conversations with Ed, we talked about the joys and challenges of aging and about the joys and challenges of our families. I think it was insightful for both of us to hear many similarities in spite of our many differences.
My scar continues to improve and while it is very obvious to me, most people remark that it is virtually unnoticeable to them – for this I’m not sure whether to trust my own eyes or the observations of others. What has helped with the hair loss is that Antonio has given me a very close buzz so my missing hair is almost impossible to see, especially with my white hair.
I started what will be weekly sessions with a psychotherapist and the first session was very helpful, just to get out how overwhelmed I am by all of the changes happening to me: physically, emotionally and looking at myself in a different way post brain tumors.
A confession: a few times this week, I was on a Citibike to get to and from treatments. I was very careful, steady and slow, but it was so much easier and more efficient than walking or taking a taxi. I can get to NYU Hospital in 10 careful minutes by bike, whereas by foot it is closer to 40 minutes and the same by taxi with cross town traffic. And a few of you will be pleased to hear that I actually bought a helmet for the first time and will be using it.
In PT, the therapist told me that we should consider cutting off our sessions since I am strong enough and have my balance at a high enough level that I can work on my own at the gym. We agreed that next week, we will work together for 2 more sessions and then I will be done with PT.
One of the ironies about where I am right now is that I LOOK pretty good: my skin is clear, I am tan, I can sit at the dinner table and participate in the conversation, etc. Yet at the same time, how I FEEL does not always match how I look: I am often tired, lack energy, lack enthusiasm about things that used to get me excited, etc. I often hear, “You look great!,” but I don’t experience that same internal sensation. It’s getting better, but very slowly. And while as noted above, I am active, I tend to overdo it. A few times this week, when I should have been home just relaxing, I was instead out to dinner, off to a friend’s birthday celebration, preparing meals…
I continue to get phone calls and emails and messages left on the blog and appreciate them all, though I must admit that some of the phone calls can be too much and for whatever reason, they tend to come all at the same time. A bit like traffic on a highway: you can drive for miles and the road is wide open, then all at once you get to a stretch on the road where the blockage is impossible!!! An example, I was on the phone about my insurance after what had been a quiet few hours at home. And while on that call, I got calls from my sister, my niece and 2 friends plus 2 text messages all at once! I just let the calls go into voicemail.
An email I got that is worth sharing is from my friend Gaytana whom I have known since Temple University days. She has had her own major health issues lately. Here are some excerpts:
“I have known you since 1969 – just a few years and all that time I have loved and admired you – NOT for your looks, though I sometimes found the tan and the perfect body somewhat intimidating. You could turn into Yoda and I’d feel the same about you and probably so would most of your friends. Your true beauty is in your mind and spirit.
“Recuperation is slow and challenging. I’ve realized I should try to be the best I can, and not necessarily the same I was before my surgeries. I know it takes time and I get sad and frustrated when others have to help me up stairs, get in and out of the car, walk with the walker etc. Friends took me to dinner for a birthday dinner Friday and It took all I had to not cry because of the burden I felt I had become. BUT I have learned to give up the extra stuff and do things to please me – fun stuff that doesn’t challenge me physically… I so admire your Dad – he remains active in the things he loves to do – maybe not the same things he did in younger life, but active. He managed to give up driving which must have been very difficult, and found new ways to be happy…
“I think that … what we have to do (is) not so much to struggle to regain our younger selves but to create a new happiness.
“Take care and slow down – enjoy the beach and use the slower time to plan a new future.”