February 2024, Groundhog Day for Michael…..

Update February, 2024

In the past few months I have often wondered if I should perhaps stop writing these updates, if my monthly communication may be an extra burden for you to bear, if it seems that I am complaining or rattling on and on….. (and on…..) Our journey with cancer, BMT, complications has been a much longer detour than we expected, and I keep bringing you along on our unpredictable ride. But then I have tiny revelations of reassurance. Like the day I bumped into a mama at the grocery store. A beautiful, kind human with two children that I taught so many lifetimes ago, perhaps a million years in my past…..The children are now grown and while she has hardly aged (there is a Miami Beach miraculous mama gene for looking gorgeous at any age!) her babies are almost unrecognizable to me. This lovely soul from my past told me she continues to read the monthly mini novellas that I write. She still prays and thinks of us and holds Michael and I in her heart. It blew my mind, but also gave me the courage to continue to write today. And if you get only one thing out of this message, I hope you grasp that you are appreciated far beyond what my words can express. You are still such an integral part of our lives, our healing, our motivation, our story…. Thank you.

As for recent happenings… January was dynamic and exciting with our continued chacha, dancing back and forth, moving up and down, going from hospital appointment to appointment, preparing for the long-anticipated knee surgery, feeling full of so many mixed emotions including fear, excitement, expectation and high hopes, terrified of the risks, embracing the possibilities. But in February the music stopped. Instead of dancing back and forth, we were confined to sitting on a hard bench. Outside the dancehall. Waiting. First hot and sticky, then cold and numb. Unable to find a comfortable position. Sitting out as the world continued to prance and twirl in front of us. Watching. Kind of like what cancer does, come to think of it. Life racing forward while you stop and get off. Or maybe this is the wrong metaphor. Maybe February was more like an old fashioned record with a scratch, skipping and repeating the same phrase again and again. For Michael, it was his equivalent of the movie “Groundhog Day”. Living the same day over and over, feeling a bit suspended in time. Sleep has been so difficult with his knee, we are not sure where the days end, where they begin again. 

Our first days of February went something like this:

Michael attempts to get out of bed with a lot of mama help. Nope. Too much pain to put the foot on the floor. Lie down again. Take a pain med. Try again. Slowly, slowly, ever-so-slowly, stand. Somehow make it to the couch. Try to eat, although appetite is non-existent. Take GVHD medications. Ice the knee. With mama help again, manage to get off the couch. Using the walker and wheelchair, do tedious exercises to re-learn how to stand on two feet, learn to walk again. Collapse on the couch. More ice. Try to eat again. Is there anything at all that is appetizing? Do something, a video, a podcast, some writing, a zoom call, anything to feel productive. Take afternoon medications. A massage from this mama to help ease the pain, move the circulation, keep the knee from getting stuck in one position. Slowly, carefully, stand again and with the help of the walker and wheelchair go outside to get fresh air. Collapse on the couch again. More pain meds. More ice. Get a lot of help to make it to the bathroom and take a shower. Try to eat one final time. Still not hungry, now nauseous. Go to bed. Cannot sleep, so talk to this mama, question if the surgery was the right thing after all, cry, laugh, share memes and pet our kitty cats who really do not understand why Michael is just not nearly as nimble as they thought, and remember it will not be like this forever. Remind each other that pain is temporary. Healing is not linear. It WILL get better. Finally we doze off, for at least a few hours…..  the sun comes up…. and we start again…. 

Some days Michael has PT (physical therapy or physical torture?). The first day the home PT, “Rolo”, came to work with Michael, we both cried. Visible tears. Me watching Michael moan and suffer, and Michael trying to comply with Rolo’s directions, but in so much physical agony, I could see his frustration and defeat. But not for long. Rolo, who has become another one of our heroes, another part of our miraculous medical team, pushes Michael to that place where he cannot go any further, then he pushes him one more inch. And Michael, having the mindset he has, pushes HIMSELF yet another inch after that. And there it is. The tears turn to sweat, the moans of agony to grunts of effort. Effort resulting in progress. Slow, turtle paced progress, and no, it is not linear, but as early February became late February, there was no denying how much more Michael could do. The pain, still unrelenting, but it was not stopping him. He could walk. He could get out of bed and shower alone. We were back at the hospital, Michael receiving ECP treatment for his GVHD. Maybe the record had stopped skipping and was playing the next part of the song. Maybe we were finally getting off the hard bench. Maybe we could start to dance again….. a very gentle, slow dance. Maybe our Ground Hog Day was coming to an end…

I am not complaining. We knew it was going to be a rough recovery, but even after everything, after almost 4 years of really, really almost impossibly hard things that Michael has been through, this may be the worst physical pain that he has experienced. There is a huge difference from past pain, of course. THIS is a pain that will get better. It is the pain of healing. This is not the torment of his body giving up and being overtaken by cancer, GVHD, necrosis and more. This is the agony of his body being put back together with new, shiny pieces that do not quite fit. Yet. Titanium and glue adapting to his body. Like the new bone marrow. I joke that this has been KNEE versus host disease. KVHD in addition to GVHD. He has so many bonus parts, parts that have been removed, and a totally different DNA, but he is still my Michael. The same loving soul who ever so courageously shares his story, our story, hoping we can both help someone out there. Turning our continued struggle and pain into meaning and purpose.

We continue to make our inspirational videos together (almost) every day. We have recorded more podcasts to share not only our adventures, but to highlight other beautiful humans going through tough stuff. We had our first review in a health magazine, recommending the podcast to its readers and I think Michael and I were both floored. We made up a new rap about the knee, coming soon! We keep doing all we can to speak, advocate, spread awareness, love, understanding, perspective, support. We are not always enlightened, but we are trying to share what has helped us. The biggest thing, you. Connection. Love. Hope. And again, you. 

I love you…….