I wish this post was four decades too soon. I'd even settle for four years too early. But unfortunately sharing my "Dying Wishes" blog post is probably only 4 months ahead of schedule. Maybe even just 4 weeks. It was an intense Oncology visit last Thursday. We heard words like "beginning stage organ failure" because metastases are causing my liver function to deteriorate. Good liver function is required for many of these toxic treatments, so this has the added insult of limiting my chemo choices. My worsening gastro symptoms suggest the beginnings of a GI blockage. Both developments hint at how short my time is, "many weeks to a few months" to paraphrase Dr. B. At yesterdays Onc appointment we agreed on my current treatment plan. We are stopping the Pem, because it was not doing enough. I am now off all chemo agents and have moved to palliative/hospice care. I am starting an estrogen blocker called Letrozole, which may slow the tumor growth down a bit, but not shrink it. My biopsy in January suggested I had over expression of estrogen receptors on the tumor cells, so we have reason to hope it will work. Aside from the daily Letrozole pill there is not much traditional pharma can offer.
For over 5 years I have known my diagnosis was terminal, but my brain simply can not comprehend I am unlikely to see 2022 and a post Covid life. I may not even make my 49th birthday in 3 months. Today I feel OK, although the yellowing sclera of my eyes hints at what is happening inside. I am trying to prepare for what seems unimaginable, not being in the world. I have to prepare for dying very soon. Bruce and I are tidying up our wills. organize the detritus of paperwork that comes with grown up life, finalizing the "End of Life Act" requirements, telling everyone I love and appreciate them.
As I try to structure my life in the coming weeks to make the most of this precious time I hope to see you, dear friends, for short visits. 10am is usually a good time. Or email and zoom, which are better than texting. If you visit bring your favorite natural history story or quirky travel fact. Teach me some interesting trivia about our amazing world. That is what I would love most.
I wish I could plan a grand gala, a festive fetes, create a sendoff party to launch me on this journey. Yet here we are still stuck in a pandemic to which I am especially vulnerable. Living the last two year of my already shortened life during this time of sequester and seclusion has been especially hard. I am saddened every day by what I have lost, by what I am loosing. Not just the 40 years I assumed I had, but the last two year of living were stolen from me too. A time when I could have lived large with focus intention, building connections and making memories. I am trying not to be angry, but I am. I have had more than my fair share of adventures, but I want more. I am greedy. I want more time. I am not ready to go. I am struggling to accept this. But I try to not create unnecessary suffering, I try to accept.
Dying wishes.....
1. I hope our community of family and friends will hold Bruce in their hearts, carry him forward through the grief and support him as he rebuilds his life in a "post Michelle" era. My biggest wish for Bruce is to find joy and happiness, live a big fabulous life. I hope you will help him do that. Don't ask Bruce how he is, while this question is asked with love we find it frustrating. There are usually no helpful answers to this question. Just be his friend. Invite him for walks/hikes, BBQ's, card games, fire pit nights, pot lucks, concerts (when we can do that again). I have been showered with love these past 5 difficult years. My wish for Bruce is he feels showered with just as much love during the next five years.
2.There are two birthday trips we have planned for late October. We hope I will be able to enjoy. In early October we have reservation for 4 lovely days on Whitby Island and then a week long small ship adventure cruise. If I can hang on until late October we hope to visit Coyote Buttes North, aka "The Wave" fossilized sand dunes on BLM land in Southern Utah. Maria and Christopher have applied for permits a dozen times and never won. In an impromptu moment Maria and I applied together and guess who won? So hopefully I will be alive and well enough to claim my ticket.
3. After I have ended up in my custom redwood urn I have asked Bruce to take me on lots of adventures, sprinkle me in some of the many places I have always wanted to visit. We are compiling an extravagant list. If you have a special place, near or far, propose it to Bruce and make it happen. Make it a celebration of my love of adventure. But for now, here is a big ambitious list to keep Bruce galavanting around the globe for a few years.
A high arctic island hopping cruise w/post cruise stop at Svart hotel
Israel! to visit all my new Cannabis scientist friends.
Bhutan, to learn about Gross National Happiness
open to suggestions!!
I'm pretty down on USA right now, how can I love a country that is dragging its feet legalize life saving research?! That makes it hard for me to want to be scattered here, even in our most beautiful natural places. But I know this will get resolved, eventually. When it does, here are a few places I would like to "visit". AFTER Cannabis research is fully legalized.
Slot canyons of south west
And how about a challenge? Lets send Bruce to Palmyra!
Table Mountain on the west side of the Grand Tetons. Maybe I should make him fly over the Tetons in a sailplane!
5. I wish for Cannabis science to be fully legal the world over so we can unlock the miraculous molecules in this plan and help people. Cannabis is medicine.
Thank you Donna for visiting from SF. And thanks to Marion and Chris for the great Bruce Birthday Sedgwick Ranch Adventure. And a peach processing evening that would even impress the Amish.
I will continue to post updates as I am able. Hug to everyone,
Michelle