What I Wish I Had Known…
By the time my son Andy was diagnosed at the age of 26 with terminal brain cancer (GBM/PNET, a brutal combination of Glioblastoma Multiforme and Primitive Neuro Ecto-dermal Tumor) there was a lot I already knew. I’d been his mother for 26 years, after all. I knew how to coax a funny little boy out of his moods, how to soothe a teenager through disappointments, how to see the big picture and not sweat the small stuff.
I knew how to let go. In 2008, I was in Maine and both my sons were in California, living a few blocks apart in Oakland, close to each other and loving their community of friends. Byron was a recent graduate of the University of San Francisco, hoping to find a job in public health nursing, and Andy was a musician and barista. He had just fallen in love with a beautiful drummer, just found a band to play with, just rented his first apartment out there.
I knew how to stay strong in crisis. I had risen to that challenge the day Andy was born, when he was taken to Children’s Hospital in Boston with ‘petechiae’, little red subcutaneous dots that indicated a concern for meningitis. I had stayed strong moving out to Arizona and back east again, strong through my husband’s unemployment, strong through the boys’ tearful nights of homework and meltdowns over girlfriends, strong through a devastating divorce, the loss of dear dogs and cats, and strong through an intervention in family alcoholism. I am calm in crisis. This is a good thing. When Andy collapsed in California, and an MRI revealed a large diffuse mass in his brain, and he was scheduled for a craniotomy and biopsy, my new husband and I left our honeymoon and flew west to get there in time to see him that night in the ICU, in terrible and unforgettable (really unforgivable… such a bad hospital) agony. I stayed calm. I comforted others. I made plans for getting Andy back east and getting the medical team lined up to hopefully buy some time from the monster.
I knew how to be realistic. I knew we don’t all get to old age. Having lost loved ones before, and having seen others endure what so many think is just unthinkable, I had done plenty of thinking about the so-called journey, and what befalls us along the way. S*** happens. We are fragile. It’s just biology. It’s nobody’s fault. My aunt, my parents, and even my sister had all lost a child. Children had also died in my town due to bone cancer and heart disease, as well as from accidents. My beautiful cousin, Lisa, died of a subdural hematoma one summer day, leaving two children and a stunned husband. Friends in our lives died of leukemia, breast cancer, and ALS. I knew that there were no guarantees.
I knew how to grieve, thanks to all those losses, though none are as close to you as your child. I started grieving the day of Andy’s surgery. I called my ex-husband at the hospital to see if Andy was out of surgery, heard the terrible preliminary diagnosis, and then called my sister from the runway at Oakland Airport after touching down, and said, “Google this word: G-L-I-O-B-L-A-S-T-O-M-A. Then call me back OK?” She said calling back with the grim news of a twelve to eighteen month prognosis was one of the hardest things she ever had to do. From then on, however, it was our reality. We never hid from it or denied it. That would have been a waste of time, we thought. Call it anticipatory grief: that’s when you know you’re going to lose someone you love. You grieve in private moments, and every day is a journey of courage and love.
I knew how to make the best of every day. Something about the person Andy was, so full of insight (or his own extreme analysis of the world) and appreciation for the best things in life, brought us all to a shared focus on love, fun, laughter, music, art, animals, beautiful skies, firelight, the best of friends. From January 2009 to May 2010 when the cancer consumed Andy’s poor brain and quieted the rage at last, we boogied. We knew how to love, and live with love.
I knew how to trust my instincts as a mother, from Andy’s home birth to his hospice death. Five months before he died, he even fell in love again. People asked who was this person coming into our lives at this incredibly fragile time? The answer was Heidi, a talented, sweet and brilliant woman, who wanted to be with Andy. When I told her, you know he’s going to die and we’re going to have to see him through to the end, and if you don’t want to do it, say so now and I’ll understand, she said, I’m in. How did the universe even bring this star child into my life? Heidi’s previous life experiences brought us domestic serenity, massage, herbal healing, creativity, caregiving skills… even more calm in the storm. She had my back and I had hers. We made it through the worst of days, the worst of nights, and I am a better person for having had her walk into my life. She is now my daughter-in-love, for life.
So after all that, what do I wish I had known? I have asked myself this question, so many times, ever since Amanda posed the question. The first answer is: I don’t wish I had known anything that it is not within a human’s potential to know.
I know there’s no doctor or alternative healer who could have saved Andy. I know we gave him the best of medical care. If Senator Edward Kennedy with the same diagnosis – who could have afforded ANYTHING – went through the same radiation and chemo regimens as our son, and died within the same typical time frame, then I know there was nothing on earth that could have saved either him or Andy.
I know that the afterlife is not for humans to know. I know that wherever we go and if we have any consciousness after we die, no one has ever proved to know. I am fine with not knowing. I suspect we go back to wherever we came from, and I feel no fear or worry about that. I trust it is a place free from pain or sorrow.
I know how blessed I am. I know that the world I live in – lucky, lucky me — cares deeply about me and my family. I had nothing but love and support of every kind. My neighbors fed and housed our extended family as they came and went. My employer gave me security and flexibility. My church and pastor took amazing care of us during and after Andy’s illness and death. My dear husband, Drew, offered nothing but love, support and kindness. Our new marriage went through quite a test, and essentially was put on the back burner for the first year and a half. I found empathy and support through online communities such as Cancer Compass, Young Adult Survivors of Glioblastoma, Daily Strength ‘For Moms Only’ grief support, my Oasis friends group, and eventually, the astounding blessing of the GBM Warrior Women, a private Facebook group. Since joining each of these virtual communities, I have met the people in real life. We have embraced and wept and even laughed together. Nobody knows like somebody who knows. Compassion makes a huge difference.
What I wish I had known then, and what I seem to care most about growing as a skill in my life going forward: I wish I had known how to comfort. Deeply, meaningfully, and successfully. I have learned from others who have journeyed through terminal illness as parents and spouses and friends and children that we want to know what to say. We grope and grasp and struggle. I felt desperately unequipped to comfort my beloved and terrified and outraged son.
Yes, of course, I said many good words. Loving words, the best I could think of. Constantly and every day. I told him it wasn’t his fault. That terrible unfair things happen to good people. I told him that we would be with him to the very end, that he would never be alone, no matter what. I told him he could have as much of the narcotics and painkillers as we could get, and he could manage. I told him how much I loved him, a hundred thousand times. The very few times he crashed and raged and wept and howled in grief over the end of his own life, I held him in my arms and I said I’m sorry. I am so sorry. I am so, so sorry. I said I wish there was something, anything, I could do. I said I wish I knew words to say. I said I wish it could be me instead of you. I said I am sorry they haven’t found a fucking cure; they’re working on it, sweetie, but right now there’s nothing. I said I know, it sucks! I said I can’t believe it either, that there’s nothing else out there. Isn’t it terrible? Isn’t it unacceptable? I said you will never be forgotten. I said you have been an amazing person and goddammit yes, please, you have to believe this, you really have made a difference in the world. Yes, I said, you have, I swear! I said you have given people so much, and the ripples will go on and on and on. I said I’m sorry. I said I will never stop loving you.
But what can you say to really, truly, deeply comfort someone who is dying, someone young and strong, who doesn’t want to die? Someone whose life was just coming into focus? Someone who loved life so much, and wanted to go on? What can you say that would put that person’s mind at ease? I don’t know. I didn’t want to say anything that was not true, that I didn’t absolutely know for sure, so I said I love you. I said thank you for being in my life. And I have said it every day since he died. And I will say it forever. I love you.