I must start by letting you know that you are beautiful, cherished, appreciated-beyond-words, and I am so grateful to each and every one of you who continue to be there for us, keep us in your hearts, read my words, even when my thoughts are raw and not quite fully developed. Like today.
This month makes precisely 3 years since my first “Michael update” and it was quite appropriately, a huge, heart-felt thank you. Little did I know I would still be thanking you, leaning on you, sending you messages, hugging you virtually, writing these thoughts on my computer from the hospital (now mostly outpatient), as I continue confiding in you about Michael’s health, our cancer and post-cancer adventures, and the path that is definitely far from linear. Our affectionately and appropriately dubbed “chacha”.
Today we are a bit all over the place. What’s new? Joy and pain. Celebration and sorrow. We mourn the physical loss of an inspiring, beautiful teenager as we prepare mentally for another who has perhaps only a handful of days left on this earthly plane. We remember the birth date of a sparkling, feisty little girl, family from the 6th tower, who passed before she could celebrate her 6th. We feel the pain, and of course fear, as we learn of more than one friend who has relapsed this month. Relapse has become a trigger word, far worse than any 4 letter word in our oncology vocabulary. We have realized that “remission” does not equal “off the hook”. Do not get me wrong, Michael is still in remission from cancer and we could not be more grateful. We only know of a handful of people who are 5 year survivors of his brutal cancer, so this 3 year mark is a tiny bit miraculous. In many ways. First the cancer. Then surviving the bone marrow transplant and resulting engraftment syndrome. Now living with the graft versus host disease. Sometimes chronic GVHD feels even harder than the cancer. Crazy, right? Life threatening. No end date. No roadmap. No protocol like when he started chemo. No getting back to normal. But bouncing forward, since we cannot and do not want to bounce “back”. Dancing. Connecting. Evolving. And the perspective that he is here. On earth. I get to hug him. I get to hear him laugh. Go with him to the hospital for treatment. Share a podcast and make tiktoks. Spread love together and a little humorous joy, too, in our not-so-serious cancer raps. How can I complain? Survivor’s guilt is real, but we acknowledge it and do our best to move forward with more depth and greater gratitude.
This morning was another one of our “big” days, as we met with Michael’s GVHD specialist at Sylvester, before heading into the hospital’s pheresis infusion unit for ECP (extracorporeal photopheresis). Michael’s bilirubin is mostly stable, but those pesky liver enzymes do not want to come down. Maybe they are his new normal, but the problem, as was clearly explained to us today, if they stay this high for too long (so far, yep, just about 3 years), it causes irreversible damage. And your liver is pretty important. For everything. It looks like the doctors will add the immunotherapy back into his infusion plan again, probably in November. We need to wait until after his knee replacement to change medications. The two don’t mix very well, immunotherapy and healing from leg surgery. His knee has collapsed a bit more and Michael is in more pain as we count down the days to surgery, scheduled now for November 7th. He limps, but he can still walk, still go up the stairs to get to our little 2nd floor apartment So here we are again, perspective. It is so hard to complain about leg pain when two other cancer survivors we know, a 22 year old AND a 6 year old, are both going through leg amputations right now. It is a blessing that Michael has a chance at 2 new knees.
The chronic GVHD also shows up as scars and marks all over his body, on his fragile pale skin. Not the tanned surfer from his previous life, but he does look kind of rock and roll! His stomach, his GI, is pretty much classic GVHD. Not much appetite, limited foods he can tolerate. Skinny. Gaining weight is a magic trick we have not yet solved. Next week he will have another endoscopy just to be sure there are no extra red flags we should know about. His lung function is low but nothing to worry about right now. Huge sigh of relief. The avascular necrosis has gotten worse, he feels the aches in all his joints so for now, working out, other than supervised PT at the hospital, is on hold. The flip side, he has started playing guitar. A LOT. In the almost 5 months since he picked it up he plays so naturally. Passionately. He is becoming a musician which is kind of weird. He was always a lover of music but he never wanted to have anything to do with an instrument. Until now. When he was stripped of all his athletic pleasures, like surfing, sailing, going to the gym, he found a new outlet. I see him channeling his musician dad. It is very beautiful and another unexpected gift from cancer. There are so many gifts. Please do not hate me. It is not toxic positivity, but the rewards are real.
Michael’s mental state is incredibly, miraculously, unbelievably, good. He has a steady group of friends who have stayed close, who try to let him be who he is, even if they cannot quite grasp all he has and is undergoing. He has a lovely girlfriend. Support on social media. A strong voice. You all know he has his mom by his side. So, most days, he is hopeful and optimistic. Not always, of course. He has his moments of wanting to be a “normal” kid. And sometimes, like today, he looks at the huge needles in his chest and remembers that this is not normal. 2-5 days a week in the hospital, even outpatient, is not really commonplace. Most 22 year olds are not lying in a hospital bed watching their blood leave their body to return transformed, altered, so it won’t attack the host, Michael, quite so ferociously. Not everyone is living with constant physical pain. Especially at his age. He knows his friends are in the throes of the start of a new semester in college, classes, homework, social campuses, preparing to graduate this year. But Michael is not most 22 year olds. Which is kind of cool. A perk, too.
We were given a beautiful opportunity to be Keynote speakers at CancerCon last weekend in Atlanta. ComicCon? Nope. CancerCon. That was truly incredible. It’s put on every year by Stupid Cancer, the biggest foundation for AYAs (and their caregivers). AYA= adolescents and young adults with cancer. Connecting with so many young adult survivors in one place at one time was eye-opening for both of us. All from different backgrounds, social classes, economic classes, religions, races, different sizes and shapes and hair lengths and all at diverse places in their oncology journeys, but so bonded by cancer. A certain, silent understanding. And Michael and I felt so at home and welcomed as we shared our honest perspectives and although we are realistic about the hardships we are enduring, we also shared the grace and joy we live with on a daily basis.
We aspire to inspire! It gives us so much purpose. I cannot believe this rough road, this painful chacha, is pointless. I repeat myself too much, but I love you. The path is windy and hilly and full of detours, but we are still moving forward. Thanks to you all and your love.
We love you.
I love you.
Forever and always,
ashlee
Michael and Mom Talk Cancer 