To my dear, unselfish, kind friends and family that I love beyond measure,
It has been almost a month since my last update and as usual, I probably have too much to share, too much to say…. starting with the symbolism of September. Sometimes in our world we have so many national days for this and awareness months for that. Did you know there is a National Lazy Moms Day? This past Tuesday was National Shamu the Whale Day. And today America is wrapping up “Sourdough September” month. OK. Not that I do not appreciate a lazy mom or love whales. And sourdough bread is great. However, in the plethora of publicized celebrations, sometimes the deeper ones can get a little drowned out. September has a couple of biggies that tug at my heart: Childhood Cancer Awareness month and Blood Cancer Awareness Month. I guess I am biased because both of these cancers have changed my life. The life of my family. Rocked our world. Stopped everything. Turned it upside down. Changed any and every path we thought we would follow. My husband died from blood cancer. My son Michael, as you know, was diagnosed at 19 with a completely unrelated blood cancer and although it was not considered a “pediatric” cancer, he was a pediatric patient. So, both blood cancers and childhood cancers are close to my heart. Too many have died. Some are still here, but facing all the after effects. It is not just the rock hitting the water. It is the ripple, too. It is not only the diagnosis. Not solely the treatment. Not merely the physical effects of chemo and radiation and immunotherapies and drugs and transplants. Not simply the bodily pain and suffering and side effects. Not just the secondary cancers and long term effects, if you do survive. It is also the mental anguish that I can say with almost certainty, does not go away. Not to be a downer or depressing! If you are reading this, you probably know me. I am an eternal optimist. I love people. I love love. I don’t deny the agony. I am not always positive, but I don’t hang out in the space of heartbreak, either. Even when my heart is broken. And yes, in the last few years, it has been broken over and over and over again. There is the dream of hope and there is the reality of living with cancer, and chronic illness, longterm. We are so grateful Michael is here. It is a daily celebration. A daily gratitude. We appreciate life so much. But it is not easy…..
We spent September at our full time job in treatment and appointments with doctors at the hospital, and also at our other full time job, supporting, speaking out, advocating any way we can. The two seem equally important right now.
At the hospital Michael is continuing ECP. Things are so stable, it is hard to change what is working really well. Michael did lose a little weight, and the latest endoscopy showed, drum roll, chronic graft versus host disease of his GI. Not a real surprise. It does not change so much for our day to day, but he did start a new, very benign medication to help his appetite a bit. Skinny is not so bad, but losing weight was starting to affect his energy. He is eating a bit more now and as only the male species can do, he is celebrating every ounce he has gained in the last 2 weeks. We met with an ENT who specializes in mouth GVHD, and she is closely following the scars and marks that are concealed inside his mouth. Michael lives with the prominent external scars of cancer treatment and skin GVHD on his back and chest, and those hidden scars, inside, too. A bit symbolic of the cancer journey, if you ask me. Mouth cancer is a real threat after such prolonged inflammation, but if it does pop up, this thoughtful, wise doctor is ready. We had the same kind of preemptive visit with pulmonology, keeping the close, watchful eye. There were some improvements in lung function, other deterioration, but it balanced the scale, so we call it a win. In the coming weeks we will have the same sort of visits with GI and a liver specialist, too. Proactive. Or just active. Both.
Michael’s first knee replacement was scheduled for next month, but has been put on hold until the end of January, 2024. As a boost to help Michael’s GVHD he had been receiving immunotherapy infusions this summer. Turns out those infusions are not compatible with healing from surgery, so we just have to wait a little longer, let those drugs get out of his system. It also gives me a teeny bit of fear, of course. The immunotherapy was helpful, so hopefully this long moment without will not cause any extra hiccups.
It is good to have these follow ups, to have so many incredible specialists on Michael’s team. He (we) feels so cared for. He feels seen. Heard. Taken seriously. But it is also a constant reality check. Michael had a cancer that does not like to retreat. The only people who have survived, went through some pretty aggressive chemo and a bone marrow transplant. Like Michael. The other option was not an option for us. So now we worry about secondary cancers, the after effects of chemo and radiation, and how to live with a long-term chronic illness. Some days it is definitely tough, but I would not trade these past 3 years. Michael is ALIVE.
I had a heart-tugging out of body (mind) moment yesterday when Mchael said to me with so much joy and passion, “I hope I live a few more years, so I can get good at guitar. And so I can get really good at public speaking. I have so much I need to do.” He said it so frankly. Matter-of-factly. “A few more years”…….. Of course, I love that he wants to live every day and has purpose! But because we know so many young adults and children who have passed away, if not from their disease, from a secondary one, early death is kind of like a given. It becomes just part of our mindset, which is a bit strange, especially for a 22 year old. That whole perspective thing of “living life every day” is so cliche, and I have said it too many times, but the more the after effects and secondary cancer screenings are part of the conversation, the more we are in that reality of yes, day by day. Really and truly, day by day.
We are so fortunate that we have somehow, organically, become advocates and speakers. We have taken this random cancer, this arbitrary diagnosis, and made it personal. Made it our purpose and our focus. Not to complain. Not for people to feel sorry for us. But to take action. I am reading the new Oprah book, written with Arthur Brooks. It is about happiness, but more about love, I think. Arthur Brooks was on a podcast recently talking about how he asked his kids, at a pretty young age, 2 vital questions. Why are you here? As in, why are you alive, why are you on this planet. And number 2, what would you die for. I guess it comes down to purpose. But having an answer to those 2 questions seems to be one of the keys to happiness. I thought I had a purpose before, but maybe now it has expanded. Exponentially. I think I know why I am here. And I am so grateful to live it. I know what I die for, too….. Forgiveness is pretty big, too. No holding grudges against fate or chemo or big pharma or cancer for this mama. It stinks, but these challenges are also my greatest teachers. So, they are gifts. And family and friends. That is YOU. I would not be here, not be smiling, sharing, living, loving, without you. You reading this.
I wrote too much, I have more to say….. But I will keep raising my voice, as long as anyone will listen.
I love you so much. With every ounce of my heart.
ashlee
Michael and Mom Talk Cancer 