Well 5 days with dear friends in perfect dry heat, blue skies, and a beckoning beach worked miracles. I feel good for the first time in 2 months. I had a huge barfy morning today, but otherwise truly woke up each day feeling good. I’m still slow, but I’ve was able to walk the beach slowly and swim in the pool everyday. It felt so good to be moving my body and using my muscles again. The kids played beautifully together which allowed us fun grown up catch up time and for me to stay with my lazy 9 am wake ups and spontaneous naps. I loved hearing their songs and endless giggles. The light changed over the sand and sea until it was a pearly pink at day’s end backed by the blue mountains across the bay. The beach was unusually flat and a fabulous mix of body surfable and just swimmable. I stayed prudely up on shore but still delighted in beach walks with my nerdy walking sticks while watching the kids throw themselves through the waves. It makes me blissfully happy to be in the company of such good friends, away from technology, on no schedule, slowly using my body again. I loved waking to the crash of the waves and the kids buoyant laughter. The kids are old enough to play independently all day. Amazing.
I finished The Gene-fascinating, Commonwealth-ok, Oh The Glory of it All- almost sad really in terms of the lack of love that seemed to exist in such a privileged world, and am enjoying a healing one “Broken Open”.
I had decided to drop the book I was working on, but was contacted by the editor to consider reviving it as a self published sort of raw notes to a memoir. I have to think about what I want it to be for while I don’t mind exposing my many flaws I’m not sure I want to have something that is still so unreadable for the kids and that frankly will disappoint some of you too at times. But that is just life isn’t it. Real raw life. So we shall see how my energy is when I’m away from the healing beach.
Clearly I need to figure out how to put more beach vacations into my remaining time. The no altitude helps quite a lot vs my mountain bucket list. And we know it helped me tolerate the upped dose of chemo that I did just a week ago. Damn it is good to get time away from the hospital! So we will see what I can stomach when I return for the next go around. My platelets get so slammed by the chemo that getting both blood and fluids were both vital before this trip. Do-able but something that certainly limits where and how long trips can be. But how lovely to even be able to think about trips again. At least a bit. Slowly. Creighton,wisely, tells me not to extrapolate forward good or bad days, but it does feel good to do so for the good ones. To escape the ticking time bomb mindset. To escape worrying about the great unknown of what is left. For the last two months my forward vision and hope really did shrink to one week or less. Now while it is in some ways liberating to live one day at a time, it is also still distressing for a once planner! But even as I feel the roller coaster making a more positive turn I know I have to hold myself in the present. I can remain hopeful for PARIS but have to make it to the kids and mom’s birthday in May first, make it to some more Birdseed performances, finish some songs, and slowly rebuild my SF walking stamina so that life is more than just bed to couch and back as it was from Feb-April.
I feel so happy that the nasty brain radiation appears to have done its work and that the liver is staying in check. So vital. Still terrifying with no obvious medicine beyond Abraxane to hit bone and liver and brain, and right now not even at full dose. But we won’t give up on it yet because we haven’t given it the full chance at full dose to do it’s work. This means I live with new lesions on the liver and try to hope for the best. It is all still very surreal. I would like to believe that there is more from here, that there is still so much more to learn in another life or another plane and certainly with some of the same fabulous cast of characters.
I still ask for patience with my bandwidth both in terms of energy and time–sometimes I just can’t handle any company–, and I remain deeply grateful for the broth, soup, salts, books, art supplies, treats, flowers. All are a joy. All are a boost. And I am so grateful. Thank you for all you do for me and my family. It is ever humbling and is true medicine.
I will send more photos as I get them from the wonderfully gifted Michele Bell.