Yo, yo, yo! It’s World Cancer Day! And you’re all invited! Woot woot! Are you ready to party?! I hope so, cause this is an invitation you can’t decline.
Maybe your invitation hasn’t arrived yet. No worries, it will. It absolutely will. Maybe you will never get your name on the cancer party envelope, but I guarantee that you will be a plus one at some point in your life. There is no escaping this invitation, as much as you would like to decline. The one bright light is that no one gives a damn what you wear. Oh, and the other party guests are some of the most amazing folks you will ever meet.
This morning I woke up early, about 4:45. No reason, really. When it was clear I wasn’t going back to bed, I dragged myself downstairs, otherwise known as our very local Siberia, and got to sorting laundry. I fired up the old iPad to see what was happening in the land of Facebook and saw it was World Cancer Day.
For me, World Cancer Day was not my invitation to the cancer party. My first time at the ball happened in 2004 when my Mom was diagnosed with GBM (glioblastoma multiform), the most aggressive type of adult brain tumor. GBM is the brain tumor that got Senator Ted Kennedy and Gene Siskel. It’s an aggressive bastard.
I was a plus one for my Mom. She had a lot of plus ones — my Dad, her husband of 46 years, and her four kids, and her three siblings. My Mom was the first of her generation to die. That’s kind of like being the first one kicked off the island on Survivor. It sucks and no one wants that designation.
But there I was this morning, seeing in my feed lots of posts about World Cancer Day. I took a few moments and made this:
Any opportunity I have to acknowledge that I had a daughter who died of cancer, I will do it. It is how I parent Donna now, along with honoring her by doing Good Things for others. I am her mother. No one else will do this. Not her father, not her brothers, not her grandparents. If I don’t do this, no one will, so I do. And it helps. It really does.
I posted my Donna meme and got on with the laundry sorting when my son came downstairs. He was especially lovey dovey, asking to sit in my lap, wanting to be held. He shivered, his forehead was warm. I worried as I held him on the downstairs sofa, the same spot where I rocked Donna in my arms endlessly as she suffered through her months of neutropenic fevers.
I was triggered.
I went upstairs to fetch the thermometer, the same one I used with Donna hundreds of times. Fevers, you see, can be life and death for a cancer patient. They appear when the chemo treatment has eliminated or weakened the immune system. They can be life threatening and are taken very, very seriously. There are entire protocols followed by hospitals about how to treat the neutropenic fever. When you live with a child with cancer, this is internalized in a visceral way.
Mary Tyler Son’s temp was 100. For most folks, this is nothing, a blip. But Mary Tyler Son is not allowed to be most people, because his sister died of a brain tumor. His reality is that he is at a much higher risk of contracting cancer than a child who has not had a sibling with cancer. And this was day 11 of off and on fevers. Eight days earlier, his fever spiked to 105.7 and that was accompanied with intense stomach cramping.
Fevers, check. Abdominal pain, check. These are both common symptoms for childhood leukemia. And, yes, I went there. I can’t not go there because I have spent too much damn time at the cancer party. It doesn’t even freaking matter that he was diagnosed with pneumonia on Saturday, because my boy had a fever and had been grappling with one for eleven days. In my head, he might have leukemia.
And so it went.
Within a matter of about an hour, I had completely convinced myself that it was entirely possible that Mary Tyler Son had leukemia and it was just a matter of time before it was diagnosed. I could picture us living that grueling, brutal life again — the life of a cancer family. I had no idea how we would do it with a baby, but we would, because of course, we would have to — what choice did we have?
I imagined the three years of leukemia treatment, generally about a year longer for boys than girls. I actually hoped for ALL over AML, letters known all too well by the mother of a child who died of cancer. I considered that the boy would be eight when his treatment was finished, our baby three. I considered our youngest growing up in the hospital setting.
I went there, I went deeply there, and I could not stop myself.
As the doctor instructed us last weekend, to call if the fever returned, I did. Sure enough, she wanted to see us and confirmed she would run a CBC — more letters you know the meaning of when you have mothered a child with cancer (complete blood count). That freaked me the hell out, as it just confirmed my own worst fears.
I saw myself in the little exam room with both sons, hearing the devastating news. I would cry, because now I knew what cancer was, but I would collect myself quickly, because I also know a cancer parent needs to be strong for their child. I know too damn much.
Long story short, my son does not have leukemia. His CBC was normal, the differentials were solid, and there were no blasts in his blood. We celebrated at Dunkin Donuts. I cried with relief in the waiting room, but only for a minute.
My invitation to the cancer party, even as a plus one, has resulted in PTSD. I can’t not catastrophize. I am grateful that it has happened only a handful of times in the four years since my daughter died. I know this is something my sons will cope with, so I work hard to breathe and reason and discuss and understand how my trauma might impact them negatively.
This afternoon I reached out to two Facebook friends, both of whom have sons in active treatment for leukemia. They graciously shared with me the symptoms their sons experienced at diagnosis. I read those symptom lists and I was embarrassed and ashamed that I had drawn them into my trauma/drama. My son had nothing remotely like what they described. My son had a confirmed diagnosis of pneumonia and a lingering low grade fever.
Tonight, my son went to bed with that same fever. He vomited this afternoon. A lot of vomit. He will not go to school tomorrow. But his CBC is clear and he has no blasts, so I will sleep soundly. Unless it’s lymphoma, because I haven’t Googled if lymphoma can be detected with a CBC. And I won’t, because I know I shouldn’t.
This party blows. I wish my invitation had gotten lost in the mail.
If you don’t mind a little bit of warped perspective, you should subscribe to my words. Here’s how:
Type your email address in the box and click the “create subscription” button. My list is completely spam free, and you can opt out at any time.