July 2022 lessons, 2 years after diagnosis, from ashlee

It is July 14th, 2022, the middle of the summer, and finally, this summer, so many people are traveling again, going on vacations, flying, driving, boating, experiencing!  Covid is still there, lingering, but life is finally more than zoom and facetime, online activities, and being confined to home. Families and friends are gathering, going to the movies, hugging, holding each other close again. But for Michael, and this mom, the Covid restrictions are still part of our life.  Well, not only “covid restrictions”, more like immunosuppression restrictions.  We are still wearing masks and keeping a little distance from strangers. We are avoiding crowds. Not a lot of group socializing, although we broke that rule to see Jennifer dance last month in an actual theater.  We sat in the back, trying to avoid too much contact, but wow, it felt good (and also very STRANGE!) to be in the presence of so many people again!  Of course, watching her dance was the real magic.  The real therapy.  And I could not resist giving hugs to some of the lovely humans that I have not seen in the flesh in so very long.  Benefit vs. risk.  I am pretty sure the oxytocin in a hug must outweigh the odds of getting sick.  Since then, we have shared more lovely moments with a handful of friends.  It has been nourishment for the soul. Human touch.  There is nothing that can replace the energy of being in the presence of people you love. We have experienced that love and connection at the hospital, of course!  But it has been special to have it at home, once again. We are still tethered to Miami, but I can think of far worse places to be confined.  Sometimes I have twinges of envy, when I see posts on instagram and Facebook of friends or family in distant lands, living life through new, exciting experiences and adventures.  But these are momentary lapses, short lived weaknesses. Because being home, seeing Michael smile, bonding with my daughter over morning coffee, waking up to the sound of birds, instead of the sound beeping IVs, taking walks outside in the evening and driving to the beach to watch the sunset change the color of the sky, those moments are better than any vacation or trip that I could imagine. Ever. A few months ago it did not seem possible to spend 3 months at home. I was not sure Michael would ever be home, honestly.  Now it has been 3 months. 3 months in a row. 3 months without getting admitted to the hospital. Treatment is still part of our daily lives. I have alarms in my phone that go off at intervals to remind me not to delay treatments, medications, PT, and appointments for Michael.  We either go to UM or Nicklaus 2-3 times a week.  But that is a miracle.  A blessing, a wonder, a shock.

Even with all we have learned the last 2 years, somehow, since we have been home, the lessons keep coming.  In the hospital, on the oncology floor, you are surrounded by other cancer and BMT patients.  Other survivors.  Other kids getting chemo or infusions, dealing with disease and sickness, side effects and sleepless nights. Families enduring similar pains, emotionally and physically. You know you are not alone going through it.  Walking in the hallway of the 6th tower, you see them, and it makes you appreciate that there is a whole group of humans in this tiny circumference who you can relate to, who speak the same language.  An unspoken bond for life.  Even if you don’t know their names.  But you do know their names. Because it is like that.  You are an unrelated family. Here at home, we are surrounded by “normal” people.  When we go outside, the kids we see don’t have IV poles attached to them.  They eat whatever food they want and don’t seem to worry about throwing up or getting sick.  They run and jump. Their bodies look so strong.  OK, I know they are not all super athletes, but after living in the hospital, our neighbors sure do look healthy!  We have to remind ourselves on a daily basis, not to compare.  It is an old lesson, one of the first we had to learn, but it is also one that needs daily affirmation. Compare yourself to yourself.  Not to others. Remember where you have been and how far you have come. It is harder when you are home and your friends stop by with their glowing suntans, bulging muscles, stories of parties, decisions about jobs or classes for next semester.  Or they can’t stop by, because they are at the beach, or traveling to windsurf or surf, or they take on internships and summer classes in other countries.  They are truly kind and sweet and they do care, but they don’t, they can’t, understand what you have been through. What you are still going through. It is not their fault they did not get the membership to this club. They look at you and think you must be all better because you are home.  Right?  But then I remind Michael, and myself, that we would never change the education and experiences we have been living these past 2 years.  It has given us so much perspective, so much appreciation for life.  We have been given so much purpose. We have been granted the desire to make the world better. So, we urge ourselves, do not compare yourself to others.  We have to repeat it a lot, do not compare. 

Another lesson, you can’t be enlightened 24/7.  This is hard for me.  I look back on everything we have been through and survived, I am so full of gratitude and love for every second of life!  My perspective, my outlook, my entire being has been affected.  I hope I have evolved and grown. But I still get annoyed by bills and I get grumpy when the AC breaks.  I still see my wrinkles and aging body and worry about how I look.  I still get impatient when we sit in traffic driving to the hospital.  I know it is silly.  And I remind myself, we are here!  We woke up breathing this morning. We are living at home. Michael is ALIVE!  But I am not illuminated all the time.  I have to forgive myself for that. Pockets of peace. Pockets of happiness. Pockets of enlightenment.  We have been given the gift of so much insight, but we are still human.

And maybe the hardest lesson of the last month has been seeing two patients we know, boys we bonded with, 20 year olds who had similar circumstances to Michael, survivors who were his age, pass away in the 6th tower.  In the rooms where we had been living not so long ago.  It is hard to understand why they did not make it.  There is not a reason that seems fair. There is not a justification that makes sense in my limited human capacity.  It becomes yet another lesson in this crash course we have been taking since Michael was diagnosed. I have said it absently so many times: “things happen for a reason”. I do believe that.  I do believe that there is a purpose and meaning to life.  But that does not mean I understand the why.  When Michael was diagnosed, we made a silent pact NOT to ask why.  Not to question. Just to try to move forward, get through it, make it mean something.  But knowing that 2 young men in our very tiny circle at Nicklaus took their last breath just as Michael came home, just as he was finally beginning to heal, you wonder.  Survivor’s guilt is real.  You cannot help it. I know Michael feels it. Why? Being a mother and thinking about those other two moms, my heart breaks into a million pieces and I hold Michael tighter, but I want to hold those boys, too.  I wish I could tell their moms it will be ok, but it is not ok. It is not fair. Michael did not do something better or more deserving. And in the same token, none of them, including Michael, deserved to go through any of this agony. So, this just comes back to life is not fair.  And all we can do is take our bitter lemons and try to make lemonade, even though Michael can’t handle lemonade…. So we leave the lemons there on the counter and don’t try to change them into something else.  It is painful and bitter and unfair, but we can accept it.  The lesson of today, acceptance. Then we don’t struggle quite so much. Acceptance doesn’t mean we think everything is perfect or just, but it means we can continue life and do our best to do our best.  

As always, I have written too much and overstepped, but I cannot end without the beautiful, positive truth….. Today, 2 years after Michael was diagnosed with cancer, we feel blessed and loved and inspired.  We feel gratitude. We feel a lot of peace, even though not 24/7.  We feel alive. We are writing our story, we want to share and inspire and maybe give ourselves a “why”.  And to make the world a little bit better.  Just a tiny bit.   Because you have all made my life so much better, more beautiful, more MORE. 

I love you…..

ashlee