It is time to reach out again, to bring you in close, hug you tightly, and share the next chapter in this story that started out as a terrifying cancer diagnosis, but has turned into a spiritual journey, an emotional awakening, mental enlightenment….with probably more ongoing physical health AND life challenges than we had imagined! “Ongoing” being the key word…..
But I will start this with the happy news that we are still home, we have been sleeping in our own beds for over 3 months now…… that is a milestone we do not take for granted. I don’t think I will ever underestimate the honest-to-goodness joy of being “home” again.
First, on the practical side, the physical state of Michael. We have talked a lot about steroids in the past, in particular prednisone. The magical medication that has saved him, but also left a heck of a lot of lingering destruction in its wake. Mental. Physical. Emotional. Spiritual. It is now one year since we discovered that Michael has avascular necrosis, AVN for short. Simply put, death of bone tissue due to lack of blood supply, for Michael, we can thank (blame) prolonged steroid use. Mostly his knees and his elbow feel the joint pain, but the necrosis is spread out pretty much everywhere. The orthopedic surgeon at UM gave him the “official” diagnosis of AVN last September and we were to follow up 3 months later, after starting fosamax, a medication to help the bone density. It would not necessarily heal his bones, but it could hopefully stop the necrosis from progressing and wreaking more havoc. He would need a knee replacement down the road, fosamax was a good place to start, though. But as things go in our unpredictable life, Michael never even took the drug. His liver GVHD turned for the worse simultaneously with the AVN diagnosis, and as you may or may not know, most medications are processed by the liver. So, if your liver is not functioning, new medications are pretty much taboo. The fosamax treatment was put on hold. As much as walking without pain seems like a pretty standard request, the focus on his liver was definitely the priority. AVN was forgotten for the time being, or maybe forever. Michael was admitted to Nicklaus for that long 5 month admission, November 2021 to April 2022 and the pressing question was whether or not Michael’s liver, and Michael. would survive. His knees could wait. BUT, finally, incredibly, miraculously, August 2022, Michael is now at a place where his doctors are looking at other body parts, trusting that his liver has improved enough to let it take the back seat for a moment. Quality of life has re-entered the conversation. Wow. I never ever thought I would say or write that again. So, a full 11 months after learning about the AVN, we returned to the orthopedic surgeon to see if we can take some steps towards less pain, and more mobility for this previously athletic, active kid. We know the AVN is irreversible, but given Michael’s age, Dr. Hernandez (the truly amazing ortho doctor) is hopeful that building strength with PT (which Michael has been doing the last 2 months) and starting the fosamax now, could help him avoid a knee replacement in the near future. His body needs a little more healing. He is still immunocompromised, not an ideal candidate for elective surgery. Sometimes we feel like we are living in the Alanis Morissette song, “Ironic”. Because of course, this unlucky bone disease started with the prednisone that was doctor and devil all in one. But let’s focus on the beauty in this part of the story: we are talking about Michael’s BONES, not vital organs. THAT is a miracle and a victory. For the past year his liver function was so dangerous, the AVN was put aside. Now we can think about physical activity. He is doing PT twice a week, we are working out together with light weights at home, we are swimming, even paddling on the surfboard again. That last part is big. Like gigantic, enormous, huge, emotional kind of big. Michael was given the go ahead to submerge his whole body into the ocean, depending on the week, depending on his immunotherapy treatments. So last week, we braved the risk of infection, and this kid of mine put his whole body back in the sea water. After 2 years of no ocean, 2 years of looking at the sea from a distance, 2 years of listening to the waves crash from the shore, 2 years of following orders and steering clear of our healing salt water, he swam out against the current, submerged head first under the water. I think the doctor’s call was more like benefit vs. risk and benefit won. Finally. Until the Alanis Morissette melody kicked in again, and ironically, the ocean may be on hold again in just a few weeks. While it’s definitely improving, Michael’s GVHD is still active, in his mouth, on his discolored, patchy skin, and even in his liver. Yes, his liver is so much better, but marked with fibrosis, like an old guy who drank too much in his youth. Skin and liver are organs that have a beautiful ability to regenerate. Thank goodness. And while steroids are out of the picture for Michael (hopefully forever and ever), It looks like his body would benefit from ECP again. Extracorporeal photopheresis. Not sure if you remember that time-consuming treatment he went through for a few months last year. It was intense at the time. It’s a blood treatment with no side effects of medication, no drugs for the liver or kidney to process. It is invasive, though. They access his vortex port by poking him with 2 huge needles (Michael says they “stab” him), take blood out of his body through those one of those needles in his chest, spin the blood super fast in a cool machine to separate the white blood cells from the red cells, plasma and platelets, return those red cells back to his body, treat the white blood cells with some chemicals to make them photosensitive, then pass them through another part of the machine to activate them with the “photopheresis”, lastly, return the treated white blood cells back to his body. Did you get all that? The idea is that the photo activated cells are now weaker, and cannot attack him with so much force. It’s a long process, maybe not 9am-5pm on the machine, but still tends to take up the whole day. The huge needles used to access his port are a little traumatizing, but the team of big-hearted, expert ECP nurses we met last year did make up for that. We thought Michael would never go back to ECP. But again, benefit vs. risk. And again, yep, he is healing, but active GVHD is still GVHD. His graft is still attacking him, battering Michael, the host. Not as threatening as this time last year, but why tempt fate? So, we huddle again, talk pros and cons, discuss the risks, and now, at 21 years old, full of so much, too much, life experience and knowledge, Michael’s voice is strong and not trembling, as he says, “Yes, I want to do it. Start ECP.” We have no start date yet, no clear plan of how many times per week, every other week possibly, or for how many months, most likely years. We know it will again limit his visits to the ocean. Open wounds are too vulnerable for the sea water, and those needles are big. But we are still optimistic and grateful that Michael is here, alive, being treated, making choices.
In the last months we have both been inching our way towards the humble goal of helping others who have been handed similar shoes to walk in, even though we know it is definitely not one size fits all, and each of our paths are unique. Yet we hope that sharing some of our empathy and compassion and experience may help someone. The understanding that we are not alone. None of us are alone. We continue the podcast, the website, Michael keeps posting his incredibly inspirational tiktoks, I continue to work on writing our story for a book one day, and we have both started support groups for cancer survivors and cancer caregivers on the app Circles. We continue to go to either Nicklaus or UM multiple times a week, with ECP, it will be more. But it never fails that each time, we run into people who we know and love, or we talk to people we had never met, and we are always connected because that is part of our life lesson, the human connection. Finding the purpose. We believe, even more now, that it is not what happens to you, but how you react that matters. We are all here for a purpose and we hope that this crappy cancer has pushed us to ours…….
I love you always. You are my inspiration and motivation and I feel so blessed each and every day, thanks to YOU all and your gift to me…. Your gift of love and prayers. Your gift of being in our lives…..