February LOVE, from ashlee

February, 2023

To my unwavering family that I simply appreciate more and more and more and more (and more……), as time passes and our journey continues,

February is the month of love. It is impossible to avoid the hearts everywhere we go, in stores, in the hospital, even the filters on our social media. Call me naive, yet I just can’t believe that this is a ”bad” thing or something to criticize society or Hallmark for creating. Maybe it IS true, it is a commercial holiday, manufactured to make money. But by now you all know me and I just can’t be cynical, I love LOVE. So, does it really matter, as long as we are reminded to spread that 4 letter word, l-o-v-e? I think sometimes you must be so tired of my eternal lessons, from balance to our cha cha, to acceptance, beauty in pain, body image and perspective, and my last update, reminding us all to be grateful. No matter what. Even when it seems like why? Why should we be grateful for cancer? But we are. Because of the love. And somehow, in some way, every update always circles back to love.

This week I went to a celebration. A colorful, music-filled, humorous, tragic, beautiful party for India Rose Carolina. Some of you were there. India took her last breath in her 5 year old body on January 18, 2023. Anyone who knows this family, cannot help but to feel sad, devastated, cheated that we will not see India’s smile and feel her energy, or in our case, overhear her making loud noises in the 6T (the 6th tower oncology/hematology floor at Nicklaus) room next to ours, wondering if she was laughing, dancing, shouting, or being stubborn, “pulling an India”, as her mama calls it. But we also cannot help but to feel so grateful, blessed, honored to have experienced the passion, life, laughter, and LOVE that she exuded. The whole family exudes. In 5 years she LIVED so much. And her family loved so deeply. Our brains are a bit linear. We want more time, but maybe time is actually deep and wide, not such a straight line. India did not live so many chronological-measured-in-a-direct-kind-of-way days or years, but she lived so deeply. So widely. Such a huge lesson to the 54 year old writing this.  One more reason to say f*#k cancer for taking yet another innocent life, but still, I appreciate with my whole heart and soul the savvy club that we now belong to. The deep and wide club. 

For me and for Michael, the 21 year old kiddo who is my greatest teacher, the deep and wide way of living and loving has become a mantra for us. Not that we achieve it 24/7. But we do get there as often as we can. We try. The past month has been focused even more on giving back to others, knowing it is the best way to lift ourselves. Another one of our mantras. It’s on my refrigerator: “The best way to help yourself, help others”.  In a recent podcast we interviewed Matt Ode, an extraordinary cancer survivor, an energetic beautiful soul, a man spending his life with a mission of serving, especially the cancer community. He has a really cool acronym that he shared with us. No, it is not one of those medical acronyms that make you feel ignorant or that you need a degree to understand like GVHD, AVN, CBC, NPO, TPN, TMA, ECP, etc…. Matt’s favorite acronym: H.O.P.E. Help. One. Person. Every day. It’s a good one. We stand by this, too, feet planted firmly. Well, sometimes we sit with it. Or lie in the hospital bed at Sylvester or Nicklaus. But our chins are up and we believe in hope. Because 31 months after diagnosis, 28 months post bone marrow transplant, Michael is still alive, granted, still in treatment. Mostly ECP, his blood treatment (I know, another acronym, extracorporeal photopheresis). Still living with immunosuppression and medications, with the avascular necrosis, gastroparesis, and chronic GVHD. The orthopedic surgeon ordered another set of MRI’s on both of Michael’s knees next week. From there we see if surgery might be an option. He is so young for knee replacement surgery. It is usually an option reserved for older patients because knee replacements have a short life span, only 15 years or so, not ideal for a typical 21 year old. But Michael is anything but typical. If it can offer a better quality of life, even short term, we are all in. Deeply and widely in. Physical therapy was on hold for a while, Michael had hit a wall and PT did not seem to be helping, according to his therapists. But the orthopedic doctor wants to challenge those thin (I did NOT say skinny!) legs of his, even with the painful necrotic knees and elbows. He needs to build a little more muscle before any surgeries, so Michael will be returning to PT at UM twice a week in March. It is time consuming but it is worth another shot. He has follow ups with the pulmonologist coming up in March, as well. Another pulmonary function test. Keeping an eye on his lungs and also keeping the other eye on the gastroparesis and his off and on appetite. His weight is stable, not gaining weight, much to his chagrin, but at least he is not losing. His mama thinks he looks like the member of a cool rock band, with his skinny jeans that tend to fall off at the hips. His skin is covered in patches and scars, but the more he shares his story, the more he connects with cancer survivors and anyone needing a little inspiration, the more vulnerable he is, which means the braver he is, that discolored skin transforms and becomes like badges of courage and honor. Like some kind of stylish model setting a new trend. And have you seen his hair???? Next week we see the GVHD specialist, too. That one always makes us lose a little sleep the night before. Scratch that, the week before. Michael’s latest labs have shown a slight liver flare up, but we try not to think too much, not worry, keep going and keep our hope. And while we keep going we DO as much H.O.P.E. as possible. The helping one person every day. At least one. Hopefully more.

Our support groups and our podcast seem to be touching lives, so we have become even more committed. We have spoken out to pharmaceutical companies recently for Rare Disease Day, sharing our experiences with the two rare diseases Michael has faced: Hepatosplenic T-cell Lymphoma and Chronic Graft Versus Host Disease. The more vocal we are, the more open and honest, the more vulnerable, the more vocal, open, honest and vulnerable we want to be. It is a good kind of cycle and we are in full blast. Although Michael is still immunosuppressed, we are taking steps to speak publicly, in person, there is nothing like that human energy!  And we BOTH love to talk! Have you noticed? We will be on the Rachael Ray show on March 2nd. They decided to air the segment with us again, I think they liked this inspiring story 🙂

As always, I spoke more about my soul searches than actual health updates. Michael is already a miracle, and now, we try to take the magic and spread it out as far and wide, or maybe deep and wide, as possible…… 

Thank you for being there for me, for us, for each other. I have said it so many times, but I believe it more and more, people are good. YOU reading this, you are not only good, you are angels.

I love you