The waiting is the hardest part. That’s what many people have told me. It’s the not knowing that’s intolerable. There’s truth to that but the waiting is also filled with naïve possibility – like a face packed with snot. That fantasy has been crushed and replaced by another tumour. I suppose that’s grounding, in the way we get grounded as children, when our fantasies are put to rest one by one.
Now I know. But it’s not really comforting.
And here’s the thing about cancer, and this “incurable” cancer specifically: for the rest of my life, I’ll be waiting. Waiting for results. Waiting for symptoms. Waiting to know.
Maybe I haven’t mentioned this, but I hate surprises. The one surprise party thrown for me when I was 17 was horrible - two groups of friends who didn’t mix. Dead awkward air in somebody’s basement. Me, faking it.
Lymphomaland is like one big Dante-esque surprise party – with the sickest fucking gifts ever. You know if snot's a great present, it’s pretty bad.
I walked up to the normally benign registration desk at the Odette Cancer Centre yesterday morning and handed over my cards. Their simple job is to say, “Hi, your appointment is in clinic D.”
Their job is not to say “You have to do blood before your bone marrow biopsy.”
I crumple. Words start leaking out Blood, Bone, Marrow, Why? No. She checks the screen again. I try to ground myself by jotting things in my notebook. I’m holding up the line. I do two 360s looking for my friends Ingrid and Paula. I spot them 15 ft away. They may as well be in Buffalo.
I gather my notebook, my overweight thermos of dandelion tea, my pen, my hospital and OHIP cards, and run towards them.
Why are they talking about bone marrow?
In my previously limited, now slightly populated world of cancer, bone marrow means leukemia. It plays like a chant in my head.
They say Bone Marrow. We say Transplant.
Bone Marrow – Transplant!
Bone Marrow - Transplant!
I can’t figure out what order to do things. Should I leave my card and take a number at the blood desk, or should I run over and fall apart at Clinic D? I do both.
I’m so visibly upset by the bone marrow news – no news at all really - that they quickly find my nurse Karen who hugs me and takes me out of the waiting room to a chair in a hall. I’ve become a toddler, seeking comfort from a kind stranger. Slightly embarrassing. But there it is.
“It’s a diagnostic test,” she explains. “They want a little more information.” I do know what biopsy means, it was just hard to hear the other words. “No, it has nothing to do with leukemia.”
There are no stupid questions, I remind myself. (Of course there are stupid questions, I’ve fielded millions, but regardless, I’m comforted.)
The words Stage 4 and No cure slide out the doctor’s mouth like we are simply reviewing what we already know. With a little research I could have come up with that on my own. But that’s not my style. The words force my breath in. Stage 4 is all about location, not treat-ability. It’s very treatable. Whatever that means.
Why my Lymphoma couldn’t stay put, I’ll never know. Maybe it was taking the risks I’ve consciously avoided - heading out in the world, traveling to remote places. I thought this cancer was fucking lazy? Maybe wandering-Lymphoma is like those hippies who’d find a beach in Morocco, get stoned every day, and hang out for years. Define lazy?
So the bone marrow biopsy.
Here’s the question: If we can program cars to drive themselves, and send money through smart phones to buy art in Mongolia, why are they still using corkscrews and brute force to get marrow out of our bones?
It was like Fred Flintstone does diagnostic testing. I imagined a large flat bare foot on my back, leverage to pull the stuff out. I love my doc. But this was barbaric. The term “some pressure” should be filed in the Guinness Book of Understatements.
I cried at Druxy's, but they make a fantastic egg salad sandwich.
Head and neck Doc who was hours late due to unexpected surgery, so his intern shoved a thin rubber tube with a tiny flashlight up my nose, which was a rip-roaring time compared to the bone marrow, confirmed that a biopsy of the mass in my face was not worth it. It would require general anesthetic.
“It has all the hallmarks of Lymphoma,” he said. (another one of those statements I never expected to be happy about). I left the hospital feeling something akin to euphoria. It faded a little by the time I battled the rush hour traffic to get back downtown.
At home I sat alone at my kitchen table with a Scotch, reviewing what I know.
It’s Stage 4 Lymphoma. There is no cure. Six months of chemo starts in 2 weeks. I won’t lose my hair from the Bendamustine and Rituximab. I still need results from an MRI and a bone marrow biopsy. Bone marrow biopsies really hurt. Much of my future remains unknown. I still have one. I have tons to do while I’m waiting.