An emotional week, from ashlee

It is November 15th, 2022. The first time in 3 years that we are not admitted to the hospital for the Thanksgiving holidays. There is still a week to go, so I should probably knock on wood. He has not been feeling great, lower hemoglobin than usual, but he is stable (she says as she shuts her eyes tightly and crosses her fingers). We go to the hospital almost daily during the work week, and it is like a job, with different benefits. But these days Michael is outpatient. We sleep in our own beds every night, with Kitty close by. Sometimes I can tangibly feel Michael’s relief at going home, but also frustration. It is hard to be “normal” when the days are broken up with constant reminders of your disease, past and present. The long term effects that were left in the wake of chemo, radiation, steroids, not to mention the transplant itself, make life complicated and though Michael is only 21, even his former youthful, athletic body has not been so forgiving or quick to bounce back. So yes, once in a while it is discouraging. I am grateful because most of the time Michael does see the light dancing in the distance. He truly enjoys sharing his experience and he seems to thrive the most when stretching out his own hand to lift up others. He is often asked what has kept him going, kept him so strong, and he openly, humbly responds, “love”. Love and connection.  Two of our themes. He remembers that he is loved, by many, and he is alive, a kind of miracle. But sometimes he gives into the “sad”. Knowing his life is still fragile. His bones are weak, osteoporosis at age 21. He is realizing that a life without surfing, without the gym, without in-person school, is harder than he thought. There are scars and bizarre discolorations all over his body. He knows he will not ever get his full “pre-cancer” strength back. He is conscious that his stomach will never let him eat the foods he used to love. Yin and yang. Balance, but mostly give and take. The scales tipping to one side then the other. That is the balancing act, I think. We do not stay too long on either end. The perfect example, on Michael’s 2 year “birthday”, the 2nd anniversary of his bone marrow transplant, a day to celebrate and be joyful, he got a text from one of his friends. They had not known each other long, but they shared the tightest of bonds because they were brought together by cancer. The  cancer friends “get” you without needing the commitment of time to know you. The reason for the union really stinks, but it brings the greatest of friendships, the closest of connections. This gorgeous, young, 18 year old woman/child let Michael know she was being discharged from the hospital to go into hospice. None of the treatments were working to stop her disease from spreading, and exactly like Michael’s dad, my husband, 6.5 years ago, she was going home to die in peace. Home meaning whatever it might mean to you. A place. A destination. Not the hospital. It was time to stop torturing this 18 year old with chemos that were only bringing more suffering, and make her comfortable with the people she loved. Two weeks later, she left her earthly body behind. It was an arrow through the heart for us. Another one, I guess. Our hearts were broken, or maybe ripped open, like so many times before. But here was Michael. Against the odds, 2 years post transplant. Breathing. Living. Yin and Yang.

Two days later we were invited to a joyful celebration of life for a few of the bone marrow transplant survivors, including Michael. These kids were miracles of modern medicine. There were only a handful of families, more nurses than patients.  We chatted with each other, compared notes on lasting issues, who was still taking what medications, passed on all the good energy for continued health and remission, and of course, shared our instagram handles. Ironically, at the same moment in time and space of this merry gathering, there was another blow in the works, the opposing force. The last breaths of a beautiful boy who had been in the bone marrow transplant unit with Michael 2 years before. He was part of a family we loved, we knew, and considered “our” people. A mama who had divulged her secrets with me for getting her son through the dreaded mouth sores. A dad who managed to smile, as we shared the BMT kitchen hoping that microwaving leftovers would make them tolerable enough for us parents to eat, even though we had no appetite. A little sister who had enough sass to compensate for her sick brother. This family loved each other fiercely, maybe they knew their time was short and packed the love of a lifetime into those 6 years. His heart stopped beating the very day we were out celebrating the BMT survivors. The irony is too ironic.  Why did it seem like every time we let go to rejoice, we got our feet kicked out from under us?  Or maybe I should take the high road and simply flip that upside down and remember that every time our feet got kicked out from under us, there was also a gift. A light. Hope. Is our glass half full or half empty? I guess we are just happy to have a glass…… thank you Charlie Mackesy for that….

I do not pretend to grasp any of this. My human mind seems to struggle when I ask the questions that start with “why”.  Why did my son get cancer? Why did he get all these terrible complications?  Why is he still alive when friends are not? Because there IS no answer. There is not the right path or the wrong one. I try to shift through my thoughts to find the morsels of wisdom to share. I cannot find anything new or original or unique. Just rehashing the old ideas of letting go. Balance. Surrender. Acceptance. Keep moving forward. Smile when it feels right. Cry. Dance. Sing. Shout. Hug. Connect. Hug again.

So, we had a hard week. Not because of physical pain. Because of spiritual and emotional anguish. Michael is improving slowly, cautiously, hopefully (knocking wood, crossing fingers, wishing on stars), but we have people we love who are not. And our hearts break. But we still must go on, we must be grateful that there are pockets of happiness, pockets of peace, grace, hope, love. And that every life touches us. Maybe that is the truth in today. We have met beautiful souls who are on this earth who love us and inspire us, and even though we think and feel and believe that their time was too short, it is a mistake, they SHOULD still be her, yet they have changed us. Made the world better. And they are now in us, part of us, lines drawn in our hearts, forever and ever….. Just as you are, reading this…..