Lessons and Love from a CEO

My name is Ashlee. Even though I have three kids, these days I am known mostly as “Michael’s mom”. Or just “Mom”. There are some people who call me “CEO”. Oh, not that kind. CEO meaning “Caregiver Extra Ordinaire”. Sort of…. In my past life I was a dancer, yep, on Broadway. Then a stay-at-home mom. Then an early childhood educator. In December of 2014 my world was turned upside down when my husband was diagnosed with cancer. It was a “treatable” lymphoma, but blood cancer is unpredictable, and he died at home, in hospice, 17 months later. It was heartbreaking, shocking, overwhelming, unjust. Our three kids were 12, 14 and 16 when he took his last breath. People were kind. They called me strong. Resilient. Those words gave me all the feels of imposter syndrome. I did not save him. I could not fix it. I felt like a fake. I cried a lot. Mostly when I was alone. But slowly, ever so slowly, I smiled again, too. The sun continued to rise. I did not forget, but the stone in my pocket, the stone that was my impossibly heavy grief, somehow became part of me, part of life and living. Our children needed me, and of course, I needed them, too.

Then 2020 came along and tragedy and cancer struck again. This time it was my middle son, Michael. He was an athlete. He ate well, worked out, and went to the gym. Nope, he did not eat tons of sugar. We did not use weed killer. He was not exposed to toxic chemicals any more than the rest of his friends. Yet on July 14, 2020, we were told that his fatigue, fevers, weight loss and night sweats, were all symptoms of the aggressive cancer in his blood. Hepatosplenic T Cell Lymphoma. It was rare and we were told not to google it. Later we found out why. He had a slim chance of surviving much more than 8 months. He was 19. He had nothing ahead of him but time. Until that day.

Miraculously, he is still here. He’s had chemo after chemo, radiation, a bone marrow transplant, and too many immunotherapies to count. He survived the BMT only to be given another chronic illness: graft versus host disease. The GVHD is long term, and he is still in active treatment at Sylvester Cancer Center……. but he IS alive.

I have spent the last 5 ½ years as Michael’s full-time caregiver. Without hesitation I gave up my career, my stability, and the future I thought I saw in front of me, to be by his side 24/7. A no-brainer. Caregiving became the focus of my life. It still is, but now it has also become my purpose and passion, not only for my son, but for other caregivers, too.

So many life lessons, one after the other, have been hurled at us. We are not eager students taking the popular courses we signed up for, but instead, maybe we are getting the education life thought we needed. “All I really need to know, I learned when my child was diagnosed with cancer”. Maybe that will be the title of my next book. Honestly, it is pretty accurate. These realizations are probably ridiculously obvious, yet they are also poignant for me, irrefutable.

• Looks don’t matter. Really. We loved Michael when he had a bald head, prednisone moon-face, 175lbs or 115lbs, scars, pale skin, rashes and all, just as much, or more, as when he was tan, blond and muscular (and hopefully, same goes for me with my extra wrinkles and new gray hairs!).

• Every moment counts. Duh. I know this is cliché, but on July 13th, 2020 we were planning our next surf trip. The next day, July 14th, Michael was admitted to the oncology floor of a Nicklaus Children’s Hospital, fighting for his life. Don’t wait. Do the thing. Who knows about tomorrow?

• People are good, especially if you give them the chance. So good. Beautiful. Amazing. Generous. Good. We say cancer stirs up a few 4 letter words. Not the ones you AYA’s are thinking. Our 4-letter work: L-O-V-E. Yep. Corny as it sounds. Because it has never been just about us, it has also been about the people who have been there for us, loved us, without fail. Whatever we have been going through. Love is the reason we are still here and love is the reason we rise up and do good in this world.

• Tiktok dances with your teenager can be pretty fun… even for a 57-year-old. Kind of like cake. Not too much. Not every day. But once in a while it hits the spot.

• Throwing up really sucks. So does cleaning it up. But keeping it in sucks way more.

• Sometimes you think you are something, and that something defines you. Like dancer, mama, early childhood educator…. or maybe surfer, sailor, college student. Then life changes. Dig deep. YOU are YOU. No matter what happens. Adapt. Just because you can’t surf doesn’t mean you are not you. Just because you become a fulltime caregiver does not mean you are not important. Maybe you need to let go of life B.C. (Before Cancer) but you do not need to let go of WHO you are.

• Hug someone. Even if it is your kitty cat. Hopefully your spouse or partner. And it better be your kids. Especially if they are teenagers.

• You are stronger than you think. You can do anything. Even if the challenge includes radiation. And chemo. And a transplant. Or caring for your loved one going through it all. Do not doubt your strength and power.

• There is no place like home. Especially when you have been in the hospital for days. OR weeks….. Or months…… Or even just a few hours…… HOME.

• Work out. It helps. Unless you are REALLY tired. Then rest and watch The Office.

• Meditate… or pray… or chant….or build Legos……or DANCE! Maybe it’s a shower, maybe it’s music. Find something that takes you out of your physical body, out of your head, and into your spirit, your soul, the angel part of you. Even for a moment.

• The silver lining is real. So is the dark cloud, don’t get me wrong. NOT toxic positivity. But going through hell, and still here? If you are reading this, you ARE still here. How can you NOT believe in magic and miracles, angels and shooting stars, rainbows and unicorns?

• Even when you are at your worst, it is probably still worse for someone else. And even if you are convinced that you win the trophy for the “lousiest day ever”, someone else’s trophy is bigger. And their day was lousier.

• Support groups, or even ONE person you can talk to who understands, are invaluable. My friends in the cancer and rare disease community are my new tribe. They “get” you, without you trying to fit in. You just belong. Sharing is sometimes scary, it makes you vulnerable, it takes courage, but sharing with those who understand also gives you strength, that sense of not being alone, not the only one going through this.

• Maybe my biggest lesson: we can NOT bounce back. People say all the time, we cannot wait for Michael to surf again, to do what he did before. We cannot wait for you, Ashlee, to teach again, to get back to your life. But Michael and I, we are not trying to bounce back- we want to bounce forward. We will never be who we were before and that is ok. We are more. We cannot go back. NOT because one can’t recover from sickness or from life pushing you down. Not because we are defeated. Not because we are not good enough or strong enough to bounce back. Not because we are less than who we were before. Not because cancer got the best of us and left us scarred and beaten. It is because when you go through something like cancer, and we have been through it twice, you are not the same. Ever. And that is the gift. That is the beauty in the pain. That is the goodness. Forward is the only option. Otherwise, it was all pointless. And I cannot believe there is no purpose.

I heard Tony Robbins once say that he made his worst day his best day. July 14th, 2020, my son was diagnosed with cancer. But somehow, someway, that worst day has become our best day. Because that was the day we HAD to change. To embrace this life. With all the beauty in pain. And all the love. And all the lessons.

Regardless of what it looks like on the outside, I have the most beautiful, blessed life because I have been given this gift of so much love…… so much community. So many humans in my life have become my family, united by cancer. Best club EVER that you never wanted to belong to. Right?