To my dear beautiful, loving, lovely, kind friends and family,
It has been just over a month since the last update and as usual, life has definitely not been boring nor conventional, certainly not linear and never quite what we expect. We do have a routine for the dozens of medications Michael still takes on a daily basis. That is the regimen we follow religiously, no matter what else is going on. And we have been working on a fitness formula that seems to keep Michael’s spirits up, even though he is limited by his avascular necrosis. Preparing physically and mentally for the first knee replacement coming up in January. But our modus operandi is flexible. Ever changing. Always adapting. When I close my eyes, I can hear the faint music of our perpetual chacha, the back and forth, the dance that is our life, and while our technique is not even close to perfect, our passionate interpretation makes up for the flaws… at least to this empathetic mama.
October. Significant in that we recognized it has been exactly three years since Michael received his bone marrow transplant. October 27th, 2020. No fanfare. No party. No cake. Not even any special, another-year-has-passed doctor visits or scans. Maybe because we are still at the hospital constantly. So, of course, we were at the hospital that day. 10/27. Hanging out with our amazing nurses during ECP. Extracorporeal photopheresis for the continued chronic graft versus host disease. Our own little commemoration was just a simple Michael and mom video we posted on instagram. A video to remember the BMT. Remember the 6 weeks that Michael spent in so much physical pain, PCA pumps for morphine, the TPN to keep him nourished, the vomiting, the hallucinations, the fear, but the most incredible family/healthcare team ever, at Nicklaus and in our community. You who kept us always in your thoughts, prayers, hearts. Michael and I grew even closer during those 42 days, but I cannot deny wondering at times if we would go home together. It was not the only time I had that thought, but it was the first. Our short instagram video was also to say thank you to YOU, to say we are filled with gratitude for life, love, perspective, and even the really hard stuff. Especially the hard stuff. The BMT saved him from his cancer, but also brought on the chronic GVHD that he lives with. The internal struggle of his blood battling his body. Maybe symbolic for the world right now. A world with so much heartbreak.
I know that Michael and I are but two small people on this planet, but, as always, we continue to share. We feel compelled to try to touch even one life. To do good. To focus on the good. The love. It is not a cure, not a solution, but it gives purpose and maybe it is simplistic and naive, but in my heart, I know it is the reason I am here. Speaking up for what I know to be true. We are humbled by all that goes on around us in the world, but it does not dim our fire or our light.
We feel kind of like connoisseurs on this cancer/bmt/gvhd life we are living. We are not doctors, not oncologists or radiologists. Not GVHD specialists or geniuses or wizards. We are not masters or authorities, but we have been through a lot. And I think the more we have shared, the more we understand. The more we speak about our experiences, the more we hear back from others, and the more we learn. It is a reciprocal life we lead. A life of connections. And it does not seem to be limited to cancer or GVHD. It is a human thing. A heart thing.
Hospital treatments, doctor visits, scans and blood work are still our full-time efforts. In October Michael and I saw a new GI specialist. He simply confirmed the chronic GI GVHD. No surprise. Michael eats such a healthy, albeit limited, diet. He is already doing the right things from the holistic perspective. The doctor did suggest a medication to help increase his appetite and we are exploring very low doses of medical cannabis tinctures. There is so much research behind the benefits. Let’s see. We also met with his BMT/GVHD doctor at Sylvester. Dr. Wang. He started out as such an intimidating figure, after our warm pediatric doctors at Nicklaus. He holds so much scary knowledge about chronic GVHD. There is so much power in his decisions about ECP, medications, other specialists he is constantly bringing in to consult with us. But he has now become part of our inner circle of humans we trust. He knows us. He has seen the raps and heard the podcast. He makes us laugh with his dry, adult humor and sarcasm. Michael and I go right back at him, bantering with ultimate respect, but we have found a way to smile with this adult doctor. We are comfortable enough to feel safe, as we ask any and every question. I think that has become a skill I want to pass on to other patients and caregivers. Ask. Tell. Explain. Question. Be brave and vulnerable. I remember feeling like my husband’s doctors had all the control. What could I know or contribute? I felt small. But with Michael, it is definitely a team and group effort. Equals. As it should be. The Chronic GVHD is hanging in there, affecting Michael’s liver, GI, skin, and mouth, but it is stable. Doesn’t seem to be getting worse. Dr. Wang is going to keep the ECP going, those huge needles and big hearted nurses…… he does want to possibly add one more immunosuppressant, see if it can help get those liver enzymes down, but we will wait until after Michael’s first knee surgery. More immunosuppression means more prone to infections, which is not a great idea before/during/after surgery.
And finally, yesterday, after months of waiting for an appointment, we saw the hepatologist/liver specialist at UM. She spent over an hour sitting with us, talking, going over every detail. She was so incredibly generous with her time, so patient and clear with her responses. It was like a dream come true for a caregiver and her survivor son. Human and personal and not rushed. She wants some follow up scans to “see” the scars, the fibrosis, the liver GVHD has inflicted upon Michael’s insides. We know what the scars look like on his body, but now we will see what the inner ones look like. She was not happy that Michael’s liver enzymes have been elevated for so long, almost 3 years now, but she was elated at how much Michael has recovered from when she saw him last and we were worried about total liver failure. Body failure. For some reason Michael’s chacha really is a dynamic, special cha cha. Backwards steps, yes, but so far, followed by these graceful, powerful forward moves that no one quite expects. I am lucky to be by his side. There must be a reason we are here.
In October we traveled as “Honored Heroes” for the Leukemia and Lymphoma Society all the way to California. It gave both Michael and I a little anxiety to be so far from home. So far from his doctors and the hospitals that know him so well. A 5 hour flight away. It was only a weekend, but since his diagnosis, we have not been in a different time zone. It was beautiful. And it reaffirmed our goals. Advocate. Speak. Connect. Help. Keep doing what we are doing.
Next on our agenda, follow up scans for the hepatologist and continue the same regimen of ECP and immunosuppressants. And spreading love. Of course.
If you are still reading, still here, please know how much I love you. How much I appreciate you and all you have given to us. Every prayer, every thought, every word, comment, emoji, message, energy, love. Nothing goes unnoticed. Gratitude is a key to happiness. I think I must be the happiest girl on the planet, I am that grateful for you.
I love you so much
Michael and Mom Talk Cancer 