October, 2022, an update from ashlee (AKA mom)… a heartfelt anniversary….

As usual, my mind is racing with a thousand thoughts, a million things to share. The last weeks have been so full of revelations, although probably nothing original or trailblazing, just more moments of remembering how much we don’t know and how to continue to live life fully through the uncertainty. It is not only a cancer diagnosis that makes life fragile and finite. It is like that for all of us, but cancer is the lens that puts it into focus, perhaps. There are tragedies like heart attacks or car accidents or natural disasters that take a life in an instant, there is simply no preparation. There are those who die peacefully of old age, less shocking, nevertheless sad. Then there is cancer. In order to treat most cancers, you must first poison, yes, poison, the host with chemo and/or radiation. You find out you are sick, then you get sicker. And sicker. And sicker. And your clinging hope is that the cancer is put into “remission” before the treatment gets you. Then, if you are lucky, and you are finally declared “NED”, no evidence of disease, the world celebrates! A party where you cannot drink the alcohol, cannot eat the rich foods, can hardly stay awake because you are so exhausted, are terrified to hug the guests because you are still immunocompromised, sit in the corner because you have forgotten how to socialize, and cannot decide if this party is just unimportant fluff, or if is it something you should be attempting to enjoy. The side effects that you are left with, physical and mental, are often just as ravaging as the cancer. Maybe worse. But you are alive. So you should be grateful. But you have been to the other side and that does not get erased from your memory. Ever. Suleika Jaouad writes about this so beautifully in her book, “Between Two Kingdoms”. That undefined moment when a “survivor” is neither in the “kingdom” of an in-treatment cancer patient nor a healthy human. Between the two. She writes about this dilemma from the perspective of a cancer survivor, but it is true for caregivers, too. I should know. 

Michael is not yet “between”.  He is still on the “cancer patient” side, but we are already starting to see how returning to the other life will be a bit daunting. For both of us. Our news of the week, he needs to continue to go to Sylvester Cancer Center twice a week for ECP, that delightful blood treatment (ok, a little sarcastic, but the nurses ARE so enjoyable!) with the enormous needles. We had hoped that the schedule could lighten a little, a small break from these last 28 months of a nonstop hospital regimen, but chronic GVHD is not to be messed with, and his expert GVHD doctor does not want to put Michael at risk again, changing the course that is seemingly keeping his white blood cells from wreaking more havoc on his already battle-scarred organs. Two days a week sounds easy, but the treatment is tough. His nurse compares it to running a marathon twice a week. And it keeps things like the ocean, large gatherings, and lifting weights off limits for a while longer. As always, I wish I could trade places with him, give him my observer’s seat at the edge of the bed, take his place under the hospital sheets to get stabbed in his place….but we still have fun. I know that sounds crazy, yet even Michael agrees. Our nurses are amazing and make every treatment like an exclusive, invitation only, social event. He also continues to go to physical therapy twice a week at the hospital, to strengthen his knees and elbows that suffer from avascular necrosis, a side effect from steroids and radiation. His bones are a bit hollow, more like a grandpa than a 21 year old, some of his joints have collapsed, but he is walking, no more wheelchair. He swallows almost 2 dozen pills a day, to suppress his immunity, to help regulate his stomach, to aid his liver function, antibiotics, antifungals…..he has become used to it, many of those medications will stick with him for life. It is hard to remember a time that I did not prepare those 3 pillboxes for the day. 

The flip side, the side we really do focus on (pinky swear!), he looks so good. Like really, really good.  His hair is pretty much the envy of anyone who likes a good “do”. His smile lights up the room. Literally. Any room. He is thin, but not the emaciated, weak 21 year old from a few months ago. His skin is scarred and full of marks, he has some kind of weird camouflage looking discoloration across his back and neck from GVHD, but we are so thankful he is no longer the glowing yellow that indicated all signs of liver failure. And those scars, each one is a reminder of something he has survived. Or overcome. Once someone suggested that in the future he should laser some of the marks to make them less prominent, but I think he wears those scars with pride, not shame. His eyes sparkle, too. Maybe that is cliche, but I swear he does have a twinkle of good humor, mischievousness, life in those brown eyes of his. There was a time just 6 months ago that his gaze turned distant and even when he did smile, his eyes remained withdrawn. The returned light is maybe less naive than pre-cancer Michael, but it is bright and optimistic, full of hope and a new openness.

I know that much of this entry may sound negative, but it isn’t. It is just the reality that we are now living. October 27th, 2022, Michael will be celebrating 2 years post Bone Marrow transplant. It feels like so much more than 2 years. I think post transplant years are longer, like dog years. Maybe this is like 20 years of regular life? It is a big deal that he is alive, somewhere in the Kingdom of Michael, wherever that undefined, timeless space might be. We acknowledge the miracle, probably this mama more than anyone. Not only is he alive, but I revel in the fact that we have both grown so much. I may be the parent, but I have definitely been a student these last 2.5 years. More than ever I understand how complex and alienating cancer is. It can be painfully isolating. We have learned this the hard way. We have felt alone, even when surrounded by nurses and doctors, even when friends and family have been there for us. We have seen it in others who have preferred to disconnect and keep to themselves. But I also accept that this can unite us, both as family, and community, if we allow it. Which leads to the most beautiful development. In the last months, we have been granted opportunities to share our lives, our insights, our fragility, and maybe our strength, which has come from embracing our vulnerability, and making the decision to connect with others. I know this could have gone many different ways with Michael. So many “what if’s”. Most cancer survivors will tell you they hate it when good hearted people tell them “everything happens for a reason”. What could the reason possibly be that one survives while another does not? That one gets this disease while others are healthy? I understand. It is a very hard pill to swallow. Harder than the dozens Michael gulps down on the daily. So I will not use that phrase, but I will say we choose how we react to what we are given. The lesson that we must remind ourselves of every day. And thankfully, magically, extraordinarily, Michael and the family (you, reading this) that surround us have chosen to react with grace, with love, with connection, with hope.  October 27th, 2020 was the beginning of a new life, a chance of survival. October 27th, 2022, we are honored to be here, to continue to share news with you, to make raps and videos, to tell this story, to write, to be part of the kingdom of life…….  There is no where else we would rather be…..

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