May. Anniversaries. Birthdays. A Magical Forest.

To my dear, beautiful forever friends and family,

Today, starting with gratitude is truly the only place I can start, because that is where we left off. The words are trite, cliche, ordinary, but oh so heartfelt and genuine, thank you, thank you, thank you, thank you……. I am, we are, so humbled by your incredible support and love. May was the month that you lifted me up yet again. My heart, my soul, my entire being. 

May is also a month of reminders….. Seven years ago, May 12, 2016, I lost my husband and my children lost their father to cancer. I had to become mom and dad. Nurturing parent and unshakeable provider. I was fun vs. discipline. No more good cop and bad cop. I was both. I had to be tough AND understanding. The voice of reason and the heart of passion. Like “BOGO” at Publix. Two for the price of one. Or maybe one for the price of two? Sometimes it has been overwhelming and so lonely, sometimes an excuse to just laugh and let some things slide. When Michael was diagnosed with cancer, there was an even more pronounced juxtaposition, though. Was Patrice’s 17 month cancer journey a gift or curse? It had taught us so much, prepared us, it gave us insight and knowledge we would not have had otherwise. There was a feeling of Michael (and this mama right here) doing this for Patrice, for dad. Making it right. Fixing the mistake of Patrice passing away too young. It felt like a tragic blessing to have already experienced cancer. A heartbreaking gift. The flip side, not having Patrice beside me, not having a husband, a father, a partner, being alone going through Michael’s diagnosis and complications, has been an underlying pain and sorrow. I have so many doubts in my decisions. I question if I am doing the right thing. Too much? Too little?  I wonder if one, singular parent can give enough not only to Michael, but his 2 siblings, Jennifer and Steven, as well. How can I do this? It is so heavy. But then, out of the blue, you, all of you reading this, arrive in super hero capes and swoop in to my rescue. Even though you cannot be my husband, or my children’s father, you take away an enormous burden. An added stress that I am not sure I could handle without you. I am not alone. Again, I can only offer my sincere deeper-and-wider-than-you-can-ever-imagine, thank you. 

For Michael, the month of May was a reminder that our “chacha” is not over, and the whole “life is not linear” theme we are living by, is not just a passing concept, but our truth. Michael said it recently in an interview: he is living with chronic GVHD. Chronic is not the word that struck me. “Living” is the word that touched and moved my heart. As we have said so many times, we cannot go back to who we were before. But I think hearing him say those words so clearly and without pause, without any tremor in his voice, with no hesitation or doubt, I really saw that acceptance was not just about the cancer diagnosis, the BMT, the hospital admissions, the medications, the pain, the setbacks, facing mortality over and over again. No, the acceptance is about accepting that he is still alive. Changed. Full of purpose. Not the life we expected. Not linear. Not straightforward. But deep. Wide. And still here, whatever that means within the constraints of a chronological timeline.

May was also the month of Michael’s birthday. May 19th. He turned 22. We fondly call him 22 plus 90 (the number of ECP treatments completed by his birthday), so actually, 112 years mentally, spiritually, and considering everything his body has been through, probably 112 years is close to accurate physically, as well. It’s a joke, but the glimmer of truth is there. The nurses in the pheresis unit at Sylvester, where Michael still does ECP twice a week, see his date of birth on his chart. They have confirmed it over 90 times. They knew it was coming. This is not Nicklaus Children’s Hospital I am talking about, this is Sylvester. The adult hospital that treats a LOT of oncology patients on a daily basis. I know Michael is amazing and wise and wonderful. He is inspirational and motivational. He is beautiful and so willing to help other cancer survivors. I see it. I talk about it. But I live with him. So you know, sometimes we don’t MISS the forest for the trees, but we have hung out in the forest pretty much 24/7 for almost 3 years so we forget to TELL the forest how unique and special it actually is. Surviving in the desert. Surviving against all odds. Not only surviving but making the world more beautiful. Then, we get reminded. About one week before Michael’s birthday the head of ECP called me aside and asked if it would be ok if they put up balloons and maybe bought some vegan, non-dairy cupcakes for Michael on his birthday. He was scheduled to have ECP treatment that day and they wanted to celebrate his birthday with us. But here is the thing, it was not just the gesture of them using their own money to buy balloons and cupcakes, come in early to decorate, take the time to make a handwritten card that ALL the nurses in the unit signed. Nope. It was when Vera, the pheresis manager, asked me about Michael’s birthday, she said, You know, Michael is special to us. What he is doing is so hard. ECP is so hard. Cancer. BMT. GVHD. Chronic GVHD. But he comes in and he smiles and talks to us. The needles are huge and they hurt, but he doesn’t complain. ECP is exhausting but he does not back down. GVHD is unpredictable and dangerous and has almost taken his life more than once, but he keeps standing up. He is a young adult hanging out with his mom and somehow having fun. Making a difference. Even in the midst of everything he is going through. Your son is special to us. Boom. It was a good reminder for me. Yes, he has blown me away with who he has become, but it is really eye-opening to hear it from someone on the outside. Maybe I take for granted that we still smile and laugh and dance and make podcasts and rap videos and tiktoks and get excited about speaking and our support groups. We love making videos and sharing our experience and reaching out to other survivors and caregivers. It happened so organically, it feels natural. But maybe it IS the road less taken. The forest really is miraculous. The forest that I live with.

And his birthday was lovely and celebratory and oh so special.

Unfortunately, the week following his birthday, he got sick. Fever, chills, no appetite. As some of you know, when you have a port, a central line, any fever means going to the hospital. So 5 days after Michael turned 22, we were in the ER at Nicklaus. Ironically, as usual, we (sort of) had fun. We spent time with nurses we love. We saw our BMT team. Smiling doctors. The pharmacists. Security guards. Etc. A kind of homecoming, except that Michael felt like crap. If he had not been sick, it could have been a social outing. The good news, we are home. He is a million times better. Simple influenza, nothing more. But, when you are immunosuppressed, the flu becomes a bit more complex. Cough and congestion linger, but today, he was strong enough to get back to ECP. 

ECP still continues twice a week for now. It is a little unheard of to continue so long at this level, but Michael has certainly been atypical. He is going to start another immunotherapy infusion at Nicklaus. Once a week for 4 weeks and then let’s see how it goes. Still in PT at the hospital twice a week, when we can squeeze it in between other doctor’s appointments. In June we hope to set dates for his knee replacements. We are also speaking, advocating, sharing, connecting, as much as we can. Trying to make the world better. Trying to make even one person feel less alone on their journey. Trying to give back a little of all we have received. Especially from you. You have done so much for us. Been there for us non-stop.

I love you more than words can ever express.