I cannot lie, it has been a tough couple of weeks. Nothing crazy happened. No recent hospital admissions. No brand new complications. No midnight visits to the ER. It sounds good. A breather. Like life is easier. The last 2 years have been so full of highs and lows, our roller coaster ride. Or chacha. Whichever metaphor you relate to more. And believe me, we are so grateful for this moment, we are so grateful that things are stable, so grateful for survival. But sometimes being on a plateau is also mentally challenging. I think my 21 year old man/child is antsy, eager to move on, charge ahead as a better version of himself with so many deep, meaningful life experiences. Covid made that restless feeling relatable to pretty much everyone. Remember how people everywhere were just so excited to get out again as the covid restrictions were lifted? To go to the movies, restaurants, concerts, and shows. To hang out in groups and see friends and hug again. To dress up or even simply to step out of the house without a mask. The world had cabin fever. Depression in young adults skyrocketed, mostly due to the isolation. Well, for Michael, the quarantine continues. Ok, I know what you are thinking, but he is alive, against all odds. We should be grateful. Yes! Of course! We are more than grateful. We are forever changed. We are blessed. We have learned a thousand lessons that we will work hard never to forget. I think we both have aged a hundred years in the span of 26 months. In a good way. Like a new wisdom has been granted to both of us. We do not take this for granted. Painfully, we have witnessed other beautiful humans, Michael’s age, who were NOT so lucky. But the last few weeks have been a reminder that his restrictions are not ready to be removed or loosened. His immunosuppression must continue for a while. Be patient. He is not on the same timeline as his friends who are in college or have recently graduated. He is not on the same timeline as some other cancer patients we know. He is not on the same timeline as other bone marrow recipients we know, who have returned, in a way, to normalcy. The medications are slowly calming down his feisty immune system, but how long it will take is the mystery. The fear is that reducing the immunosuppression will also jump start the GVHD again. So we wait. An MRI this week showed the avascular necrosis that is affecting his knees is now in his elbow, collapsed bone and small fractures making it impossible to straighten his arm, to lift much weight. He had the incredible pleasure and tease of surfing a few weeks ago. It was painful, but being in the ocean a few times was beyond miraculous. Unfortunately, since re-starting the ECP treatment, the ocean is off limits again. We hope it is temporary. The immunosuppressive drugs and infusions that are keeping his bone marrow from attacking his liver are also keeping him from having enough immunity to go back to school or big social events in person. Gastroparesis is keeping him from enjoying food or gaining much weight. But again, we are grateful that he is alive. Perspective first. Always. A beautiful reminder about what is important. But quality of life is precious, too. So, my surfer boy and I must find value in different things, like connecting with others virtually or aspiring to inspire on social media, or simply with our optimism. Because yes, the last few weeks have been kind of a blow, but at the same time if you listened to our latest podcast, you heard Michael and I talk about laughter, joy, finding the humorous side to our “Michael and Mom Talk Cancer” adventures. It is kind of ironic how much fun we do have together. It sounds crazy. For sure I did not expect so much laughter when Michael was diagnosed with cancer July 14th, 2020. I remember seeing my world collapse. Transform in a heartbeat. Nothing would ever be the same. Now it is 2 years later and even after everything he has been through, he manages to laugh his Michael laugh. And smile. And move forward. As a mama, watching him, supporting, holding, loving, advocating, not able to take away his pain or to fix his body or get rid of his scars, not possible to guarantee his future, me too, I cannot help but to continue to dance and keep my forever enthusiasm. This long and complex journey has been so full of goodness and love and blessings. We share our experiences without shame, and aspire to support those going through whatever difficulties they are facing. I cannot explain why we feel so strongly about connecting with others, why he is alive, why we started to make lighthearted raps and videos about our grave situations. But I can offer this, while it is true that toxic positivity is a real thing, I think we have a genuine non-toxic perspective of optimism. Most of the time. Of course it is not always singing and dancing. The last few weeks were tough. Facts. We are not joking 24/7. There is not an eternal smile on our faces or the constant ringing of laughter in our home. Sometimes I look at his scars, his suffering, the port on his chest that is constantly bruised from being accessed so much, and my heart breaks into a million pieces. I wish he did not have to swallow over a dozen pills daily. I wish he did not have to do ECP. I wish he could go to college and get in the car with his brother Steven to drive up coast and catch some waves. But what we have found is so much purpose. And connection. Because when you go to a dark place you can either stay there, or use it as an opportunity to grow, to learn, to find meaning. Sometimes we want to avoid the hard things in life. As a mama, I want my kids to be happy! But that is not always possible. We NEED the hard things to grow. To find the light. If it is always sunny, you can’t see the stars. And the stars are kind of magical.
As always, I am too verbose! But that is the backstory as to why we made our latest rap. To say, ok ECP, just like cancer and GVHD and AVN, you kind of suck, but we are going to have fun with you. We poke a little fun, challenge ourselves, to make us feel normal and not so bizarre. Because it is a little abnormal, this post BMT life we are leading, but also so fulfilling and enriching.
Thank goodness for you all. Your connection to us has kept us grounded, given us purpose and meaning. We love you and are so grateful, today, this week, and for ever and always…..