December 2023, a colorful, FULL, month, changing how we see the world

Happy 2024 to you, my everlasting friends and family, my connection to the world outside of cancer and hospitals, my sometimes quiet but always present support system, the people I hold close to my heart, even though you may not realize how much I appreciate you.

December. Wow. It was a full month with so many colors. There is the old cliche that time is fleeting and seems to move faster and faster, especially as we get older. But somehow, for us at least, cancer has slowed the clock down. It feels like so much gets packed into each day, each week, each month, that just one 24-hour period has multiple seasons of its own. Maybe this is another hidden gem. The gift of a richer, deeper, fuller life? Or multiple lives? Since July 14th, 2020, I feel I may have lived about a million years…. Or at least a hundred……

We started off December traveling to Austin, Texas with the Infusion Access Foundation. We were there to advocate, learn more about advocacy, share our story and bond with an intimate group of patients and survivors who have taken their own medical struggles and are spending their lives finding ways to make it just a little easier for the next person. Humans who are making the world better. Using their pain as a tool to help others. Not taking the pain away, but giving it so much meaning. Giving hope. It is a good way to live and it was a beautiful group to have surrounding you. The trip was short, just 2 days, but it left Michael physically exhausted. Inspired, yes, but he had already been sick for weeks and the trip just drained his body that much more. He lost weight, working out was getting tougher, his appetite was about zero. We ended up in the infusion center of Sylvester getting fluids and antibiotics, but mercifully, we were sent home with more oral antibiotics and strict orders to hydrate and rest. It is not so easy when you have an urgency to DO stuff. When you want to make your days count. Sometimes our minds speak much louder than our bodies, but the whispers of Michael being sick for over a month finally grew loud enough and we both slowed down, caught our breath, focused on simple things like food, rest, walking, being still. Well, as much as we could between ECP treatments and gastric emptying tests and labs and all the usual hospital routine. Our continuous full-time job, chronic GVHD.

December was also the month that we celebrated the life of an 18 year old who left this earthly plane too early by some’s standards, but somehow, I think he knew what he was doing. His brief life touched so many and is even now, after his body is gone, still making a huge impact on the world of brain cancer. It is hard to accept the short life of a beautiful, vibrant, teenage kid. A sweet, kind, funny kid that I taught in my previous lifetime as an early childhood educator. A kid that hated the steroids as much as my Michael and the effects of the crazy medications and radiation meant to prolong his life. But he still did everything he could to keep his body vital until the new lab was set up to use his cancer, his very brain cells, to help the next child. Inspiring is NOT the word. Thinking about his legacy is far beyond my limited vocabulary. We like to say “there is no why”. There is no why, as in, please, do not try to blame these cancers on our kids. They did not do anything wrong to deserve this. They did not eat the wrong food or think the wrong thoughts. I do not think the innocent children or parents-doing-their-best are at fault. But maybe there is a why. Or at least a purpose. Michael and I have to believe that. We do believe it. Again, not blame, but purpose. I think that bears repeating. The celebration of life was a celebration. It did not feel depressing or tragic. It felt like going home. Seeing friends I had not seen in person since pre-covid, pre-cancer. A party to acknowledge how many of us share a collective love and common connection. Cancer bringing us together again. And again. Not the club you want to be part of, but once you are in, the most supportive, honest, humbling, real club ever.

December brought my daughter home for the holiday and that was more than lovely. And my oldest son Steven, too. We spent 4 glorious days at home together. Cooking. Laughing. Sharing space on the couch. Opening presents with jokes that only we think are funny. Wrapping gifts that did not have such a high price tag but all the feels and emotions of great wealth and abundance. A generous soulmate from Nicklaus Children’s Hospital magically gifted us tickets to the Miami Heat game on Christmas day and we felt like we were in one of those Christmas Hallmark movies with the predictable happy ending. Our 4 days together were just about perfect. Then of course reality did have to hit. This mama who has cared for Michael through cancer, GVHD, viruses, covid, infections, and more, got sick. No big deal. I was knocked down hard, but life goes on, caregivers must continue to care-give, and it was just my little reminder that I am human, too. Sometimes. Who would have thought? 

Now we are preparing for Michael’s first total knee replacement, January 30th. It is a little unbelievable. The orthopedic surgeon gave us this date way back in July of 2023. A million years ago. 2024 was this distant far away land on the calendar. We do not plan things very far out these last 3.5 years, so 6 months in the future was not exactly an impossibility, but maybe it felt like a star in the sky. Very far. Faint. Sometimes blocked by clouds. Definitely not touchable. Science says stars are actual balls of hot gas like our sun, but when we look up we see a tiny twinkly magical sparkle in the sky. Michael’s first knee replacement has felt like that. Magical and twinkly and maybe not quite real. But it is here. Happening in a few weeks. He has been working so hard, through the pain, strengthening all the muscles around his knee, strengthening his core, strengthening his spirit, too. We see small, occasional flare ups of his chronic GVHD and cross our fingers medications don’t change and put the surgery in jeopardy. So far, so good. Well, painful, but prepared. We know that because of his immune system and some of his medications, recovery will be long. Maybe a little longer than for a “normal” surgery. But, hope that he will be able to bend and straighten his knee again fully, have more mobility without so much pain, it drives my very motivated, disciplined 22 year old. Left knee January 30th. Right knee, maybe next year. That is a date that is still too far for us to wrap our minds around. We start with one. Day to day. Moment to moment. Perhaps knee to knee.

And so, as always and forever, as long as I have a computer and a way to communicate with you, I love you. I am grateful for you. Wayne Dyer said, “The world does not change, the way you see the world changes.” I do not see the world as punishment or bad luck or crappy karma or tragic or unfair. I see that I live with a survivor and I am blessed to be his mom. Those we know who have not survived, touched us, changed us, made us better. I think I am the luckiest human on the planet. I have love. I have you.