Shortly after my husband had his brain sliced open a second time, in a futile attempt to remove his malignant brain tumor — a ferocious glioblastoma, the same type of ruthless cancer now afflicting Senator John McCain — one of my best friends dragged me out for drinks.
Things at home were, shall we say, not good. I had a 1-year-old, a crazed dog with severe aggression issues, a disintegrating husband, and a full-time job at a daily newspaper. Upbeat days were few and far between. So I was enthusiastic about grasping with both hands at some semblance of normalcy (and beverages) with someone who really, truly knew what I was going through. At least, I thought she did.
Instead, I got this: “When Justin is all better, we can all go out for dinner together and really celebrate,” she said. “You just need to get through this moment.”
Hold up. Say what? My husband had stage four brain cancer. The prognosis was 14 to 18 months from the time of diagnosis, which was about six months back at that point. He was on his second operation, after the tumor roared back with an ambition I could envy on a purely professional level. There was no cure. No treatment. Just what turned out to be a desperate yet ultimately pointless attempt at delaying the inevitable. I expected vapid statements and foggy optimism from distant social media acquaintances but from someone who’d been to our wedding, who had known me for 20-plus years, who was present when our son was born? I gaped at her.
A Tweet, a card, an Instagram post doesn’t alter reality, no matter how sweetly it's phrased.
No one can know how this will feel until they are in the middle of it, and that's exactly the point. Feeding false hope and insipid positivity to people grappling with fatal disease is insulting and unhelpful, at least this is how it felt for the many months when my family was living through it. When someone you know is in the depths of the morass known as brain cancer in general — and glioblastoma in particular — the worst thing you can do is to send milquetoast, meaningless sentiments to people in the trenches.
A Tweet, a card, an Instagram post doesn’t alter reality, no matter how sweetly it's phrased. In my experience, reality is what kept me grounded and focused on what was ahead, a road so twisted I’m still recovering — and it’s been five years. I didn’t need flowery emails or fluffy notes, because none of that served a purpose.
You want to help? Come over. Order sushi. Sit and talk and listen and watch Pretty Woman with me. But please, don’t pray for me and don’t ask god to do the impossible, because when was the last time you met someone who was thriving with stage four brain cancer? Yeah, I’ve never met that mythical medical miracle, either. Rather than pretend it isn't so, the best thing any of us can do is make the most of whatever little time we have left together.
And this brings me to the fury I feel at the outpouring of delusional support for Senator McCain. By all means, send happy thoughts and positive tidings. Send care packages from his beloved Diamondbacks. Share your best wishes. But the kind that implies that he’ll somehow beat this thing? The American Brain Tumor Association reports that the median survival for adults with this diagnosis is 14.6 months.
When I see tweets telling McCain he’ll be victorious, like the one from Vice President Mike Pence — “John McCain is a fighter & he'll win this fight too. God bless!” — I'm reminded of the inane and tedious cards and texts I’d get from likewise well-meaning people. They said that if I stayed upbeat, we’d beat this thing. Thanks very much for that crushing sense of responsibility for my husband's subsequent and medically predicted death.
And Bill Clinton, “a swift recovery” isn’t really how this thing goes down. It’s more like a rollercoaster that crashes into the ground.
Of course, no one will be hurt by you saying you care. That you're thinking of them. But a quick Google search tells you everything you need to know about what they're facing. Glioblastoma is lethal, fast, and kills people in the worst way — by destroying their ability to think and function. The standard of care is surgery, followed by radiation and chemo.
My husband went through two surgeries (because the tumor always comes back), followed by Avastin (a very, very expensive chemo drug that somehow shrinks tumors without prolonging life and yet is prescribed for brain cancer — ask me not the reason why) and very intense radiation. Nothing helped. Not Temozolomide, a drug which had zero impact. Not holistic stuff, which cost a bundle and did nothing. So please, don't peddle false hope. It doesn’t do anyone any favors.
Most especially, hopefulness was no help to my son, who is now 6 and who has to come to terms with the reality that his dad died from a tumor with no known cause, and no cure. I never would've led him to believe his dad would bounce back from what we saw him succumbing to. Instead I try to help my child as he grows up understanding that it’s never going to get better, or easier, to live without him. We just get more used to having photos serve as paper-thin replacements for an actual human — a partner and a dad.
As my husband lay in bed, a breathing corpse covered in Fentanyl patches to help him cope with the chronic pain caused by the cancer spreading from his brain through his spine (via spinal fluid, which circulates throughout the body causing debilitating pain and making the cancer even harder to contain), someone emailed me to say that she had a cure: mistletoe extract. This is not a joke. Also, she was praying for me, while presumably researching this mistletoe cure that his doctor at Memorial Sloan-Kettering had somehow missed in her double-digit years of brain tumor research.
If we hadn't been in a rental apartment, I would have punched a wall.
My enduring gratitude goes out to our doctor, Lisa DeAngelis, who sat us down and cut through the crap in four quick sentences after three months of hardcore treatment. “I am stopping chemo. It’s not working. If you want to see loved ones, do it sooner rather than later. By sooner I mean three weeks.”
And to me, a stone-cold realist, this was worth 10,000 saccharine Tweets about prayer and hope and ultimately delusion. We spent our final weeks with family, eating food prepared by my chef of a brother-in-law, who painstakingly made Justin tiny burgers he could actually consume — sometimes. We hung out. We talked. We went to the beach for one last getaway, two weeks before my husband died, and took pictures and hugged and loved on each other. And now, instead of empty good wishes, we have memories.