December 2024 Update, Chronic GVHD, New Immunotherapy, Instagram, Hip Replacement, and Love, Always LOVE

December, 2024

Hello beautiful, graceful, generous, dear ones that I am blessed to continue to call family, friends, soulmates, kindred spirits.

The perception of time after a cancer diagnosis, similar to dog years, seems to stretch ever so much more than “normal” measures. Kind of like the extended hallway as you try to run in a scary movie, and my last update was oh so long ago, at least from the point of view of this cancer caregiving mama. It is not because we are not still in this GVHD journey. Not because we no longer feel your presence. Not because we are suddenly strong, independent and without need of your supportive love and messages and virtual hugs. It’s because the story is such a long one, far more chapters and acts than I ever dreamed possible, and I do not want you to feel you are being dragged along unnecessarily, without thought or regard for you and your energy. YOUR lives. But alas, today my heart strings pull at me to bring you in a little tighter, draw you in a tiny bit closer, especially as holiday magic calls out for more connection, more love, more sharing…… 

Many of you have seen Michael recently on social media, posting videos at the gym, gaining a little weight, and finally, miraculously, in the ocean, dancing on his surfboard again. We have learned so many dances these last 4.5 years, but the pre-cancer choreography on the waves is one he has been longing for, patiently and not-so-patiently, for so long. My mama heart loves that he is so open and vulnerable on his instagram. He shares his lowest of lows, most notably when he gave in and gave up, ready to take his life, just over 2 years ago. He also shares his determined steps forward, like going back to the gym and the ocean, especially in the last few months. My quirky middle kid has found a unique but relatable voice that resonates with other cancer survivors, and that somehow makes all the truly awful, painful moments much more bearable. I think we all carry heavy loads with so much more strength and conviction when we feel we have a purpose. A “raison d’etre”. When we know it is not for naught. And so, now sharing his story has become a kind of motivation to keep going. Not give up. Get up when he is pushed down. We both use social media to connect and bond with other survivors and caregivers, in and out of the cancer community. We are ALL going through stuff, whatever it is, and talking about our experiences with honesty and vulnerability, and yes, purpose, really does connect us. Bring us together as humans. I believe that with all my heart. That is the beauty of social media. Alas, we know there are downsides, as well. One of those downsides is perhaps not seeing the whole story. The edges are cut off. It is framed perfectly. Unlike life, an IG reel has a beginning and end. It IS linear. It moves forward with emotional music and well-placed captions, in perfect 2-D. Life is so much more dimensional and layered, full of subtext and shadows. So yes, Michael is back in the gym and on his surfboard! It is amazing and exhilarating and I feel blessed beyond blessed. We both do. And the reason he CAN get back in the ocean is because ECP, extracorporeal photopheresis, the blood treatment for chronic GVHD that you have been hearing us talk about for so long, has been slowly getting weaned. He has had longer breaks between treatments. This has given him time to recover from the difficult port access, to feel better, to get wet, go in the ocean, get to the gym. ECP has been a miraculous treatment for Michael, but definitely a huge commitment. Time and energy. We will not even talk about financial. Most chronic GVHD patients do ECP for an average of 6 months. Twice a week every week, max 50 treatments. Michael has been at it for over 3 years. He long ago surpassed his 150th treatment. That’s when I stopped counting. We do not complain or question. The nurses have been phenomenal. His doctor is brilliant, but also like family. Sylvester is as much our second home as Nicklaus. But, as all good things somehow come to an end, ECP has also lost its magical touch. Michael is stable, but ECP is no longer helping. For the last few months his forward thinking doctor has been weaning him from the twice a week every week treatment to every other week, then every 3rd, then every 4th, now every 5th week. The process is long, his labs are scrutinized carefully, constantly. He is still taking precious, immunosuppressive pills every day, to help keep the GVHD in check as the ECP lessens, and there is a reason he is being weaned. A new immunotherapy was approved in the last few weeks, and his brilliant doctor has been monitoring the process for months, to access the drug for Michael as an alternate plan. We are hopeful the immunotherapy infusion will be available for Michael to start in January. A seamless transition, if such a thing exists, from ECP to infusion. It would be once every 2 weeks. Not as invasive as ECP and hopefully this new treatment can get his liver enzymes moving in the right direction again. The GVHD continues to be active in his liver, his skin, his mouth, his GI. He gets tired easily. Hard for a 23 year old with an athletic mindset. But as you can see, it does not stop this kid from living. From moving. From pushing. His lung function is low, maybe the more frustrating of the GVHD issues. No matter how much he tries to build his stamina with cardio and weights, he is left out of breath when he goes too hard at the gym or when he paddles as he surfs. The part of IG reel you do not see. He checks all the boxes for healthy diet, exercising, taking the right meds, looking after his mental health. We meditate. Go outside. Practice a heck of a lot of gratitude. But boom. There it is. GVHD. We were recently part of an incredible, informative chronic GVHD webinar and the psychologist said it best, “Chronic GVHD is a full time job”. And I think I will add this, when it is not full time, you are still on call. You are still dealing with the effects and side effects. I hope I do not sound negative. I am not! I am even more positive than ever. More peaceful and hopeful and full of love. As I must always state again and again, over and over, repeat rewind repeat, we are living a miraculous life. This past month was another round of devastating losses in our little cancer community, relapses and last breaths, and we mourn, we hold so much grief and heartbreak, even as we know we cannot stop our own lives. Holding grief and happiness. It is possible to have both, at the same time. Contrary to popular belief. I try my best not to have survivor’s guilt. Michael, too. But it creeps in. We do not want to flaunt our blessings, our borrowed time together, but we also want others to know it is ok to live. Live now. Live fully.

My own tiny recent adventure was a total hip replacement. Michael teases me that I am copying him after his total knee replacement last year, jealous of his internal bionics. Like most caregivers, I do not dwell on my own problems, but I have had a hip injury since my long ago days as a professional dancer and I guess the dancer turned 7 day a week runner was not so wise for my poor right hip socket. The last 3 years have been painful, but the past months the agony was simply ceaseless, so I finally took a breath and saw a doctor for ashlee. Doctor led to x-ray led to orthopedic doctor led to surgeon. The only solution for the severity shown in the black and white images was surgery and within days, before I could blink and shake my head no, I was in pre-op trading the uncomfortable chair next to the bed, for the gurney in the middle of the room. Instead of stating Michael’s date of birth over and again, it was my own. Thankfully, even though hips are major surgery, it is about a thousand times easier than knees and a zillion times easier than cancer. One night in the hospital due to a little complication but by the time I came home Tuesday night, I was ready to do laundry, feed our kitty cats, and make our homemade meals again. How lucky am I? Michael did get to sleep on the hospital couch that one night and he was like, “wait, mom, you slept on that uncomfortable thing for all those nights when I was admitted? For 2 years straight? How?” So, that was kinda nice….. A little more perspective. From both of us…..

I know this love letter is long, and full of far too many thoughts and words, but as always, I end with love. Our favorite 4-letter word. Our biggest healer. Our most powerful message. I am hugging you, holding you close, wishing you magic, miracles, merry making, family time, gifts in the form of wishes, hope, love. 

I love you always, I am more grateful for you than ever, 

ashlee