To my dear beautiful friends, family, guardians of HOPE, because that is what you are for us, the constant reminder that we are connected to the world, to life, to HOPE, because of you,
In May we celebrated Michael celebrating another birthday, which in itself felt miraculous and magical. After almost 3 years since his cancer diagnosis, every day that he wakes up still seems a bit wondrous. Not to be morbid. Not to be negative. Not to be “oh ye of little faith”. But every day for the last 1080 days, I wake up and can’t wait to hear his voice, to know he is ok, still part of this earthly existence. Every day is still a gift. I hope it does not wear off. Ever.
We also remember that it has been exactly 7 years since my husband Patrice, the father of my kiddos, died at home, in hospice. I think there must be a thing with the number 7. Like the “7 year itch”. “Lucky number 7”. 7 days in a week. And the biblical one: “On the 7th day…….” I googled number 7 because honestly I don’t know so much about numerology. I still don’t. But apparently 7 signifies learning and reflecting. Makes sense. We have been reflecting a LOT lately. Seven years ago when Patrice died, it felt surreal. The very cliche dream that I could not wake up from. It was like a movie about a different family. A part I was playing, wife turned cancer caregiver turned widow. 7 years and so many lifetimes later, the hollywood film has become a home movie. We watch it and remember that we lived it. We talk about Patrice all the time. More now than ever. He is with us, inside of us, around us. I see him in Steven’s deep green eyes, I hear him in the guitar Michael has recently picked up, I feel him in Jennifer’s sweet sensitivity to the world. He comes into all of our dreams. The 7 year itch seems to be playing out as “don’t forget me. I am still in your hearts and souls and some of your DNA.” We don’t forget because as we seem to say so often, life is not linear and what happened 7 years ago still touches us so deeply. And widely. And profoundly.
Then there is Michael. Another surreal happenstance. Michael and this mom and our continued journey together, our chacha and never-ending lessons that we cannot stop sharing, hoping you are not sick and tired of us and our messages that we cannot shush. Neither one of us tend to be “loud” people, but our voices have gotten stronger as we realize we are not meant to bounce back from this, but instead bounce forward. Merriam-Webster defines “bouncing back”: to return quickly to a normal condition after a difficult situation or event. It has been a difficult situation, that part is true. Will we ever be “normal”? So many wonderful people have told us we are strong. We are resilient. We WILL “bounce back”. But I don’t know how I feel about that. No, I take that back. I’m pretty sure I do know, I don’t want to bounce back. I thought I did. We thought we did. When Michael was diagnosed, we faced the diagnosis and chemo and even the BMT head on. We were full of mental fortitude. Michael was young and had been so healthy, we would get through this, come out on the other side, get back to normal life. This was a detour but we would “bounce back”. I am not quite clear when this perspective shifted, but it was pretty early on during his treatment. It was so intense. It was too life-changing. We could not go back, only forward. NOT because one cannot recover from sickness or from life pushing you down, but because when you DO recover you are not the same. We are not the same. Hopefully, better. Stronger. Deeper.
Since the last update Michael started a new immunotherapy at Nicklaus. It is a lengthy infusion, the idea was to give it to him once a week for 4 weeks, then once a month for as long as it seems to be helping. His chronic GVHD is not worsening, but not improving, either. It has reached a kind of plateau and his doctors are hoping the immunotherapy will give him a little boost, a little jump, a little bounce forward. His team did try this same infusion once before. It may have helped somewhat last time, the doctors are not convinced one way or the other. There are so many variables in this sort of thing. We always say that his treatment is far more art than science. Or balance. Give and take. Sometimes shooting arrows in the dark because those arrows hit the target on another GVHD patient in the past. Chronic GVHD is considered a “rare” disease, and definitely not one size fits all. Different cocktails, recipes, combinations of drugs work so differently for each cGVHD patient. Michael is still on oral medications, plus extra corporeal photopheresis, ECP (the fun blood treatment with the gigantic, painful needles that he does at Sylvester twice a week). The combo of oral drugs and ECP have gotten him out of the woods, that is for sure. There are still a lot of trees, especially in his liver and GI, but when we look up, we see the sky, the occasional shooting star. The idea behind adding this particular immunotherapy was to see if we can clear the trees just a tiny bit more. Maybe enough to see the moon and a few planets. So far, it has been exhausting, but not so terrible. And Michael really does not complain. He has to get IV Benadryl before the infusion which sounds like a relaxing nap, but instead it causes him to be fidgety and irritable for a few hours. It makes my inspirational, super hero kid a bit more human. Sometimes I wonder how he handles it all in stride so effortlessly, with so much poise. Hence, when he gets a little cranky, I think, “Whew, he IS my kid after all!” It is a little crazy how well he/we have adapted to spending these long days in the hospital. It is simply part of our normal routine. Our job. Our school. Our life. 4 days a week in the hospital outpatient has become a gift, it means we spend 7 nights a week (lucky number 7!) at home. In my past life, even when Patrice was going through cancer, time in the hospital was traumatic. An overnight admission was so scary. After having spent hundreds of nights in the hospital, now hospital time is our groove. And not so bad. Kind of special and kind of beautiful, full of the best people ever.
Today is the 4th planned dose of immunotherapy, let’s see what his innovative, artistic, brilliant, wonderful doctors think. If they decide to continue a few more doses or let it rest. We hope he gets at least a little break from immunotherapy because once he is off immunotherapy his orthopedic surgeon wants to go forward with Michel’s first knee replacement. They do not like to replace knees at his tender age and with his level of immunosuppression. Most knee replacements last between 10-20 years, and Michael is only 22, but we are going for quality of life and having knees that are not always in pain will be a game changer for this kid. He will be able to walk more, maybe even bike. They will start with one knee, see how long the healing takes, then do the other. Both knees have stage 4 avascular necrosis. Total collapse. There is no cure other than total replacements. But we are just blown away that we are talking about knee surgery. One year ago talking about knees was like talking about dessert. Or jewelry. It was an accessory and waaaaay far in the backseat. We know this is a life-long commitment and Michael has a high risk of more long term complications. But he is alive. Surpassing all expectations. So you know, let’s just bounce forward and go for it. If knee replacements help for a few years, we are all for it.
And you, you are our trampoline. You have given us the impetus, the means of bouncing. You are our magic and our miracles and our hope.
We love you so much. We are so incredibly grateful and we are doing all we can to make you proud. I love you.
ashlee
Michael and Mom Talk Cancer 