A March Update: new knee, new rap, chronic GVHD, fertility, and more lessons…..

March, 2024

I am a little behind for a “March” update, it is already mid-April….. Our days seem to be both busy and quiet, full but contained, continuing to move forward, even as we sometimes falter and struggle with the feeling of being stuck, or suspended in time. March picked up where February left off, mostly homebound due to Michael’s new knee, or hospital bound due to not-so-new GVHD, but ever so slowly getting back to walking on the beaches, recording more podcasts, and of course, continuing the social media posts and virtual support groups that keep us connected, even from our well-worn couch in our humble living room. We were inspired to make yet another “rap” (this is number 9!) about the knee replacement and recovery. It gave Michael and I a lot of laughter together, as we find relief in poking a little fun at all of our crazy oncology, BMT, graft versus host disease, avascular necrosis, and too-many-complications-to-name adventures. Humor helps, as does being creative. When we make music, even in the form of a tongue-in-cheek rap, we get to do both. 

Month number two post total knee replacement surgery was definitely an improvement over February, but nevertheless, more painful and ever so much longer than we expected. By now, we should know better, expect the unexpected. That was probably lesson number one, about 45 months ago. Who could have predicted any of this when Michael went to see his pediatrician for a routine blood test just because he was feeling tired?

Of course, lesson one was followed by a million more. We preach that healing is not linear. We even put that one on a t-shirt. Sometimes you teach what you need to learn the most. That and “comparison is the thief of joy”, “your outsides do not define your insides”, “be kind, you never know”, “adapt”, “bounce forward, not back”, “there is no why”, and our ever so popular, especially recently, “this pain will not last forever”. Our struggles really ARE the gifts. The beauty in the pain guides us, to who we are trying to become. I know I am repeating myself right now, forgive me, but here is the thing, the more I learn these lessons, the more I realize that I have to actually practice them every day. Repeat them to myself. Like working out. Like brushing your teeth. I think we have to keep reiterating and applying. Daily. For me, March was a month full of recurring lessons. 

ECP continues. Going back in February was tough. Michael lying immobile in bed with his knee swollen and stiff, still on pain meds at that point, and then those gigantic needles being stuck into his chest, connecting him to the phersis machine, taking out blood, doing the ECP magic to keep his GVHD in check. It was difficult for this mama to sit by and not be able to do anything. Except try to make him smile. Share a funny cat meme. Hold his hand. Or give him space to cry or vent. Use my mad massage skills to try to alleviate some of the leg pain. The last few weeks though, ECP has become routine again. Easier. Familiar. I see it in Michael’s eyes, the way he teases and jokes with the nurses once again. We banter back and forth not only to pass the time, but also because we genuinely care for each other. We are, through circumstance, bonded with these health care angels for life. Recently I said to a cancer caregiver, another mama with a beautiful daughter going through cancer, remission, relapse and a BMT, that it all becomes normal. She very gently corrected me and said no, this is not normal. She is right. There is not a whole lot about this life and these treatments that are “normal”. But we do get used to it. For better or worse.

In March, we also saw Michael’s very kind pulmonologist. She never seems rushed. She has a gift of actually “seeing” her patients. Every 6 months we meet with her, check in. Lucky Michael gets to do a PFT (pulmonary function test), which is not fun. If you have ever done one, you know. No matter how many times he has to sit in the enclosed, glass box, put his lips around a not so comfortable plastic mouthpiece, clip his nostrils shut, breathe, exhale, inhale, HOLD!, on command, it’s a challenge. His lung function has been low since bone marrow transplant, although stable. This month it went down, not a lot, but enough to notice. We hope it is simply from surgery, not intensifying GVHD. We do know the reality of how GVHD attacks the major organs. So far for Michael it’s been: GI, liver, skin, and mouth. The lungs were possible, but this was the first time we heard the words: “yes, lung GVHD”. Knowing and hearing are two different things. I felt Michael deflate just a little. Or a lot. A knock down. But, as usual, he inhaled, with those mostly functioning lungs, and got back up.This kid is determined to do all he can to improve the next PFT, or at the very least, keep it from getting worse. Even though he never completely stopped working out after surgery, never stayed in bed other than the first few days in the hospital, he has obviously been held back by his knee. But lately we are back to gently gaining intensity with our workouts together. He is limited by his knee, by AVN, by GVHD, by treatments that leave him exhausted, but he is constantly pushing his limit. I know I’m his mama, but he really is a pretty motivational human.

March had more news. We found out for sure that Michael is infertile. We pretty much assumed as much. Radiation and chemo are a deadly combo when it comes to fertility, but until he did the test, who really knew? Knowing he is alive is all that matters, but this was an itsy bitsy teeny tiny disappointment. Sort of. He is not sure he WANTS to pass on his genetics. So, we take the information and move forward.

Loss happened this month, too. A man we have never met. Cared for by a woman who has become one of my closest friends, a kindred spirit, soul sister, although we have never met, either. Not in person, anyway. The gift of social media and virtual support groups is that we can connect to people all over. This dear cancer caregiver wife, mama of 6, artist, homeschool educator, human, had a husband given the same diagnosis as Michael. “Given” is maybe not the best word. Like Michael, he had a slim chance of surviving much more than 8 months. He made it almost 2 years. Another reminder that every day Michael wakes up is a kind of miracle. First, I am bound to this woman because her husband and Michael shared the same rare cancer. Then bonded so tightly through my weekly support group. Now we are forever linked because we are both widows, our husbands taken from us, from our children, too soon. Before we were ready. We have become single mamas, raising children, praying we are enough.

And so, Michael and I try not to have bad days. Bad moments, yes. But a whole day? No. Life is too short. We try to find the joy, the hope, the optimism, the peace, in pockets. The small pockets that with practice can become deep pockets. Longer pockets. And the really rough moments, the really difficult mental thoughts, we look them in the eye, recognize them, which is what they really want from us, say hello, and then do our best to keep going forward. The longer we are in this cancer community, this rare disease domain, this chronic GVHD kingdom, the more we realize that we are not alone. And the more we are compelled to be there for others going through it. Or something else. We all have our stuff. The magic is in the purpose, the connections, the vulnerability, I think. Sharing it. It has been our best medicine. That and love.

I love you