To my dear, beautiful, tenacious, steadfast, patient, kind friends and forever family,
I am overdue for my November update. The last couple of weeks have been full, a little off of our expected plans and path, and we can hear the faint but distinct music of our chacha…..back and forward and back again. The distant beat of the chacha is not bad news, maybe just a little more choreography than we envisioned. Before you become concerned, all is good. I mean, “good” in our sense of the word. “Good” in the oncology/hematology/living-with-a-rare-disease-and-long-term-side-effects world we live in for the undetermined future. Perspective is everything. Physically, today, Michael is stable. Labs are stable. Not better, but not worse. We know the high risk he has for relapse, other cancers, complications, etc. His very feisty GVHD is hanging in there but no “new” ailments. For us, that means life is miraculous and even magical. Like the twinkly lights and holiday music and wrapped presents that are everywhere right about now. Mentally, it is not quite as crystal clear and festive. The ups and downs of reality and truly coming to terms with the last 3.5 years. All we have lived, all we are living, all that is still to come, seems to have caught up with us, with Michael, in recent days. No doubt, life has been incredibly motivational and inspirational most of the time. Cancer makes for profound purpose, deep connections, honest relationships, intense realizations, passionate social media posts. But sometimes it also makes for heartfelt, emotional moments of gasping for air. Comprehending that this is not over and will never be behind us. It means we bounce forward, not back, as I constantly remind myself AND Michael. Maybe one of my greatest lessons. But my 22 year old does have moments of longing to be Michael Cramer, Pre-cancer. Michael Cramer, Surfer. 99.99% of the time he is full of hope and love. Content, peaceful, grateful with where he is. Wise beyond his years. He has become such an incredible human. A role model helping so many inside and outside the cancer community. The purpose we both have gained gives us more fulfillment than we could ever have imagined. But that 0.01% hurts. PTSD is real. And it is not over. He still gets those enormous needles poked into him twice a week. It is normal, but definitely not normal. Our normal.
We started November with sparks and enthusiasm, making educational videos for WebMD about chronic graft versus host disease, and participating in other video content through various foundations to share our story of hope and advocacy (and did I say love?). We were guests at a beautiful gala to raise money for cancer research, where we saw other kindred spirits who understand and get it, no questions asked. The first 10 days of November we felt like we were on fire, non-stop cancer influencers, making a difference in the world, accomplishing all this between hospital treatments and doctor appointments of course. But it caught up with Michael. Too much, too soon. I mentioned that his labs are stable, but stable for him still means a weakened immune system, low hemoglobin, high liver enzymes. By mid-November he ended up in bed with a fever and some unknown virus. Nothing to fuss over, but with that lower immunity his body takes it hard and recovery is slow. We were reminded that plans must be flexible. We were supposed to speak at the University of Florida in Gainesville, the week before Thanksgiving for an educational session about cancer in young adults, to tell our story, raise awareness, share a real life example. We had been planning our speech for over a month. But given Michael’s health, the trip became impossible. The organizers were creative and managed to zoom us in to a huge screen and the audience got a taste of a very energetic mom and a Michael who sounded congested but managed to summon enough force to be his incredible, inspirational self. We would have preferred to be in person, but this was a pretty amazing compromise. The following week was Thanksgiving and because we had a few days off from the hospital, Michael and I were hoping to make the 3 ½ hour drive north to St. Petersburg to visit my older son Steven. We would finally see his apartment for the first time, meet his friends, stop by where he works, and most importantly, have part of our tiny family united for the holiday. Alas, nope. Michael was still too sick, although not in the hospital. Not inpatient. Stuck at home. Or actually, lucky to be at home, depending on your perspective. In the last few years, we seem to have been blessed with a lot of quality time, just the two of us, Michael and mom, that’s for sure! Of course, we are beyond grateful he was at home, not admitted, but it was a bit of a blow and reality check, I might add, that his health is still fragile, that plans are still tricky. Life is not linear. Healing is not linear. Maybe just another good reminder to be grateful every day. And we are. Every Day. 99.99% of the time.
On the medical front, we finally saw the sought after hepatologist who was thrilled that after various exams and scans, she determined the fibrosis in Michael’s liver is only stage 2. We were worried it may have been worse, much worse, after the relentless beating his liver has taken from 3 years of GVHD and near liver failure. For us, this was like Thanksgiving, Christmas and New Years rolled into one.
He has lost some weight again, so this Friday he has a gastric emptying test. It is a long 5 hour test/scan that we hope will give a little insight into how his digestive tract is functioning. Yes, I promise, we have a holistic dietician and a wonderful team of GI doctors. But as much as we focus on nutrition, diet, healthy supplementation, and doing as much exercise as his joints and muscles can handle, his stomachI is still an issue, many foods are just so hard to tolerate and appetite in general is not what it is for most of the population, let alone a 22 year old. It could be so much worse, though. He CAN eat. Especially my creatively healthy, home cooked recipes. So again, celebrating THAT victory.
AND, we are now preparing for his first, full knee replacement in January. We have been waiting so long. It is hard to believe it is finally happening. Hoping it helps with mobility and movement, meaning a big boost psychologically, as well. We know it will be a long recovery, but it is also very magical that we are talking about knees, not only chronic GVHD and his battered liver.
Michael is still taking over a dozen medications (and this is after eliminating all but the extremely necessary). His bi-weekly hospital treatments (ECP) are exhausting, and so is the chronic graft versus host disease. The PTSD is always there, lingering. Sometimes PTSD, sometimes anxiety for future issues. But please know we are NOT complaining. Not at all. We KNOW that being alive, every single day he is here, is a gift. A bonus. Whatever that entails. 99.99% of the time. So we will continue to make videos. Share updates. Advocate and tell our story. Find the beauty in the pain. Support anyone who needs it. We are here….. And loving you, reading this…..
Michael and Mom Talk Cancer 