January gloom seeps in
Brighter skies lift heart
I spent most of January feeling "under the hanging sword". I was dissapointed in December and have been anxious and worried that the lower dose of chemo would not be enough to control the cancer. The chemo team made it clear that if that was the case they would not be able to go back to the full dose and I would no longer be able to continue the chemo trial.
I know it is a useless activity to let what ifs spin through my head, but I couldn't help feeling that I should have "toughed it out". I felt like a complainer about the hand and foot pain and fatigue. Which were really only part of the reason they lowered the dose. Not being able to control my high phosphorus was a big factor in the decision.
So if I was snappish at times or more pessimistic, I apologize. It was a gloomy anxious month for me.
This morning I started my day with my usual yoga with Adriene but chose to do a cozy, self care more relaxed episode. It's a long day at the NIH and I didn't want to start it with a tough workout. I think this helped to set the mood for the day. A reminder to be kind to myself and those around me.
I have often mentioned the caring and empathetic staff at the NIH and how amazingly supportive everyone is. I am not sure I have mentioned how supportive and caring most of the patients are as well. Honestly we are most of us there, being treated for things that can't be treated anywhere else. We are blessed and being given our last hope. How could we not be glowing with gratitude for one more day, or month, or week, or year. There was the time I spotted someone with a Boston marathon jacket sitting outside the phlebotomy lab. It sparked a quick conversation of running trail verses road and training. His parting words were enjoy your next race! Today while sitting and drinking the contrast die for the CT scan a patient who had finished and was headed out leaned down to me and said "Good luck dear!". I could almost cry from the offer of compassion from another going through their own struggles. So many conversations and stories from people around the United States and the world. Sometimes they are new patients, sometimes they have been getting treatment for years there. Most people are actually fairly cheerful and enjoy talking about nearby places to eat and other inconsequentials. Some enjoy trading stories and with those stories they are often mostly of hope. Hope that they did not have before.
After today's CT scan we went up to wait for the results of my tests and appointment with the chemo research team. And as we ate some packed sandwiches I found myself no longer worried. No longer able to feel anxiety. Even when I started to gnaw at that anxiety like the comforting bone it has been all month, I found myself feeling warm and calm and at peace. I just couldn't feel worried. Maybe it was running into my surgeon in the hallway and being reassured that I had a great surgeon who was ready to take over when I needed him. Maybe it was having the scan over and results coming soon. Or just the general atmosphere of hope that I find at the NIH.
As things happen the news was good, the cancer is still stable with the lower dose. And furthermore the study was supposed to end after 2 years, and now was opened up to be continued indefinitely by any patient having positive results. Once more I beat the odds and can make some plans for travel, seeing friends, seeing shows. I do not have to worry about trying to keep my schedule open for surgery and recovery. I also get to enjoy the continued increased energy and hopefully a return to some running and races. Even the sun came out and there were blue skies when I left the clinic. The weather was warm and spring like and we could walk to dinner without jackets.
Wishing you more sunny skies than grey my friends. May you find time to enjoy the things that make life worth living.
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