December, 2022, a holiday update from ashlee

December 25th, 2022

Once again, to my dear, most beautiful humans ever, who continue to astound and amaze me with unwavering love and generosity, 

I thought about writing a “pre” Christmas message, to share holiday wishes with you all, but at the last moment I got cold feet, and not because of the drop in temperature here in Miami. Not because I was too busy or forgot about you. (How could I ever forget you, my angels here on earth?) But because even at my ripe, wise old age of almost 54, I still worry about “jinxing” future events. And I really did not want to mess up this holiday at home. With great relief, I can now confirm that we made it through Christmas with no ER visits, no anxious emails, no texts at midnight or panicky phone calls at 2am to concerned doctors. We cooked (notice, I said “cooked”, not necessarily “ate”) our traditional Christmas Eve dinner, with my 3 very grown up children, my lovely mama, her charming boyfriend, and of course, kitty, watching over it all, making sure no one left her sight. I think as we get older, family time becomes more special, more valuable, more precious. But in particular for this little family of 4, who have not been at home together for a holiday in 3 years, wrapping gifts, shaking mystery presents under the tree, sipping tea, comparing recent favorite movies, cooking, laughing with each other, sitting and being quiet together, Christmas was far more than special or valuable or precious. It was a kind of miracle. That word again. Overused but right on. Thanksgiving was the rehearsal. December 24th was the real deal. There was no audience, the cast was oh so small, but each character was vital. And we made it through. Not without a hitch, of course. We had to have a few setbacks, just to keep us humble. To keep us on point with our chacha. Reminding us not to drop the ball or get too comfortable. A few days before Christmas we spoke with Michael’s physical therapist at UM. He made the unexpected recommendation for Michael to take a break from PT. This sounds pretty good. Like a success. More time at home. But the reason is not quite that victorious. PT has hit a wall. It’s just not helping anymore. Michael’s AVN is getting worse, his bones seem to be deteriorating more, even though the offending steroids are no longer in his system. Working out, Michael’s go-to, not only to be as physically fit as possible given his difficult circumstances, but also for his mental health these last 2.5 years, has become too painful. We still try to go on walks, we still attempt some sort of exercise together on a daily basis, but it is not the same physical challenge this kid craves. Needs. Loves. Maybe this is the push for knee surgery. Future elbow surgeries. So, on the bright side, my Vortex-Port-Avenger kid may have to become the Bionic man far sooner than we had thought possible. The day after this surprising blow from PT, we met with the BMT/GVHD specialist at Sylvester. Mchael’s liver has improved, his skin is not even a tad bit yellow, the whites of his eyes are actually white, and although I hate to repeat the same cliche over and again, it is a bit of a phenomenon. Even his conservative, cautious doctor used my overused term, miraculous. But, and yes, there must be a “but”, just like with the PT, the improvement has stagnated. There seems to be a bit of a plateau. Of course, there is plenty of permanent liver cirrhosis. The skin and mouth GVHD just won’t quite let up. ECP is keeping it under control perhaps, but chronic GVHD is long term. We knew that, what we did not know, according to his doctor last week, “7” seems to be the favorite magic number. As in: “give or take 7 years for the GVHD to really improve”. Probably at least seven years for Michael’s body to come to terms with new marrow. Wow. Barring other complications, that is. But we don’t talk about those complications.  We know they exist. We know the risks. We know and he lives with all the side effects not only of cancer and his transplant, but of his treatments. We know about relapse. We do not need to will these things into existence. Today, Michael is still in his infant stage of GVHD. There is a long road ahead. It is not straight. It is curvy and hilly. He will see a pulmonologist at the end of January. He has lung restriction, nothing crazy, but we want to keep it that way. He has also been having night sweats and headaches, just like when he was first diagnosed in 2020, so a PET scan is scheduled for January 6th. I do not, can not, believe the cancer is back, yet every scan, each biopsy, all close examinations, make us hold our breath. Close our eyes. Pray. They are the clouds on the horizon that the meteorologist cannot predict. We hope it will blow over. So we wait. Trying not to tap our feet, but to continue to live in the moment. Or turn the tapping into a dance. Or a song. Or a podcast. Mostly trying to continue to LIVE. To remind ourselves of the lessons we know so well, like mindfulness. Acceptance. Everything is temporary. Love unconditionally and love a lot. If you do not go for it now, when? Take a risk. A lot of risks. Michael is soon to be starting an online college course to move him one step closer towards his goal of becoming an oncology nurse. I am figuring out next steps in my ever changing and evolving career (totally open to suggestions!), wishing to continue to live my purpose of making the world a little better, hopefully through this journey as a caregiver. Michael and I both feel we are so changed and have so much to share…… yet still so fragile? Vulnerable? Still restricted by immunosuppression and hospital schedules. But moving forward…..

So we try to keep our hearts and minds open to whatever may be next. Hoping it is not another storm, but maybe a refreshing sunshower.

Love. Always love…… it seems to make the magic and miracles happen…. And as always, more than ever, I love you so much. And you all make me want to be better…. To do better.

Sending the most magical wishes for the holidays and the year to come… YOU are the real gifts.

Love

ashlee