“There are no words…” It’s what I find myself saying when a friend is deeply suffering or struggling, when I learn someone has been newly diagnosed with cancer, and especially when I learn that someone has passed from this ugly disease.
I learned last week that yet another beautiful soul was taken from this world, all too soon. He was just 30-years-old, the age when most of us in the New York City area are just “finding our way”. Two years ago, he was living in Manhattan, had a successful job, came from a wonderful family, and was loving life. Then, out of nowhere he suffered a seizure only to learn he had a golfball-sized lesion in his brain. It turned out to be a glioblastoma, which if you’re reading this blog, you likely know is the deadliest type of brain tumor.
NO ONE is a statistic, but the median 5-year survival rate from a GBM diagnosis is approximately 5-6%. In other words, when people hear they’ve been diagnosed with a GBM many begin to “make arrangements” and typically pass within 10-15 months. There are no words when hearing such a dire statistic. There are no words when you hear that someone has been diagnosed with a GBM. And I certainly have no words when I hear that a “30-year-young” man, who was so deeply full of life, is now gone.
In May of 2017, I lost a very dear friend to a GBM. I think about her constantly. I miss her. At the time she passed, at the ripe old age of 35, she had already undergone 4 brain surgeries. I had just undergone my 4th in April ’17. By then though, she was nonverbal, having had a severe seizure and suffering from an unstoppable tumor wreaking havoc upon her entire body.
We were “partners in crime” in our brain cancer world. We were fighters. We were strong, otherwise extremely healthy young women. No one else understood me and what I was thinking, feeling, and going through like she did. She’d have surgery. I’d be undergoing more radiation. Then, I’d have to undergo another surgery, while she was undergoing more radiation, or yet another clinical trial. I would sit with her while she waited for her radiation treatment, or while she was getting her chemo. She would visit me in the hospital while I awaited my next surgery. Although we saw each other, thankfully, outside of the hospital, somehow someway we’d always wind up back there together.
I was, in fact, the first person she saw when she learned of her final recurrence. Her husband was away on business and she went to her appointment alone. We had plans to meet for dinner right next to the hospital because I too had an appointment that afternoon. I’ll never forget that day for as long as I live. Once again, I found myself muttering between sobs, “There are no words.”
Yes. As the quote above says, “Cancer is messy and scary. You throw everything at it…” Well, my sweet friend threw everything, and the kitchen sink, at it! She never forgot to throw love at it too. She was a fierce advocate for brain cancer awareness, raising funds for multiple charities. She was even welcomed at Vice President Joe Biden’s Cancer Moonshot Summit. Even though she was suffering, she would still find the will to speak publicly about her story. She was my hero. She always will be, yet she’s gone.
THINKING ABOUT THE END
There’s one particular moment before my 3rd surgery I’ll never forget. My dear friend, even after undergoing who knows what round of chemo, still wrangled the strength to sit with me in my hospital room. Of course, just as she arrived the aides came to take me to a pre-op scan. I had only been waiting ALL DAY for that damn scan! Rather than going home to rest, she came with me to the scan.
Part of being “sick” is learning to wait. So, of course, the aides parked my wheelchair in the “waiting area”, so aptly named. Then my friend and I waited and waited. We talked about casual, mindless things until we noticed a frail, elderly woman laying there alone on a hospital bed, crying out, “Help me. Help me.” She just kept repeating it, over and over. She was too far from the desk for anyone to actually hear, or at least I want to believe that no one could hear her cries.
I could not get up from the wheelchair, but my friend who always cared for others more than herself, as weak as she was strode up to the desk and demanded someone assist the elderly woman. When she sat back down next to me, we sat in silence. We were thinking the same thing, although we didn’t want to say it out aloud. Finally, as we shook our heads in sync, she finally uttered it. “I never want to wind up like that. I’d rather die before I get to that point.”
I didn’t have to say it. She already knew. Yet, I said it. “I agree.”
AT THE END
I was thinking of that moment when I finally said, “Goodbye” to my friend. People tried telling her husband that she was essentially gone-just a vegetable. He refused to believe it. However, I was sincerely scared of what I’d walk into when I entered her hospital room that day. Was her husband right, or was he just in denial? Would she look like that old, pale-faced woman crying out in distress?
As always, my friend never ceased to surprise me, or anyone, by her strength. She looked so good. Her hair had grown back enough that her husband and other visitors could put beautiful hair bands and scarves around her head. Although she was nonverbal and could not move any part of her body, I knew the friend that I loved so dearly was still with us.
Another 2 women, who had known her longer than me (sadly, it was brain cancer that brought us together), were saying their “goodbyes”. Her head was permanently turned to the right side, looking out of her hospital window. I didn’t even think to walk out and give them all privacy. In my defense, I was less than a few weeks out of my 4th surgery, connected to a 24-hour portable IV pumping an insanely strong antibiotic through my body, hoping to kill the massive infection in my skull bone. (Yes. That WILL be another post in the future). I watched as she closed her eyes. At that point, her friends decided it was time to go, so now it was my turn…
Everyone left the room. It was just us, once again. Yet now, it was so horribly different. I sat down next to her bed and just began rambling. I had a card of St. Jude in my hand and unconsciously, began rubbing it against her one hand while gripping the other, which was in a permanent fist from the seizure. Suddenly, her eyes opened. Again, she could not move so she remained staring out of the window. Yet, I knew she was hearing me. She was still there alright!
So, I began telling her how much she meant to me; how I didn’t know how I’d get through this without her; how I never thought we’d “be here”; how we were never supposed to “be here”. We were supposed to grow old together with our husbands. We were supposed to drink lots of red wine together. We were supposed to see a cure to this wretched disease. As I rambled, her hand began to tighten around mine. Skeptics would say it was some involuntary movement, but I know it was far from that – she was telling me in the only way she could to stay strong and keep up the fight. Even if her poor, diseased brain didn’t fully comprehend every word I said, her soul knew.
Eventually, it was yet another person’s turn to come in. I spoke loudly enough to ensure that if she could hear and understand me, she’d know. I told her husband how strong she still was and that she was assuredly still with us. As I went to leave, I came around to her side, kissed her forehead and said “I love you.” I noticed two little tears at the corner of each eye and asked her husband, “Is this normal?” He said, “No! I’ve never seen tears in her eyes before.”
Walking out of the hospital that afternoon, I wasn’t sad. I felt at peace. Although I said, “Goodbye” to her physically, I knew I’d she her again. Not in that body, of course. She passed about one week later, fighting til the last moment. Yet, I knew she would always be with me. She would be amongst my army of guardian angels.
LOOK FOR THE SIGNS
I can’t think of how many times I know my friend has shown she’s still with me, looking over me. About a year ago, I was walking along the seaside in Europe. It was late in the afternoon. There was practically no one in sight. All of a sudden, I began to think about her. Out of nowhere, I heard something that eerily sounded like my name. I suddenly looked up and saw this beautiful, white bird soar across the sea. I just smiled and uttered her name out loud to myself. Then, another time while thinking about her, a monarch butterfly fluttered next to me. And last week, when I learned of that young man’s passing from a GBM, a pristinely white butterfly hovered around me. I believe that was my friend assuring me that she would take care of him, just as she’s always taken care of me.
In moments of grief, sometimes (well, most times) there are no words. Yet, sometimes we don’t need words – just look for the signs.