I have stage 4 indolent Lymphoma I’m asymptomatic. So why do they want to treat? That’s the question I asked myself as I was pulling out of my garage the other night. Maybe I was also pulling my head out of the sand.
For folks who have been reading my cancer blogs, it may seem like I’m nowhere near the sand, like I’m right up in the beast’s face, yelling my head off. I’m not. I’m hiding. Tiptoeing up to the news with my hands over my ears. Terrified.
But this cancer can be mine to control - to a degree, although people tell me it’s out of my control - or mine to surrender to. If I’m not willing or able to break it into chunks and figure out what it’s all about, at least I can assign others to crunch it for me. To present it to me gently. With a dose of humour.
I had dinner with friends the other night, and posed my question. Marie, a documentary journalist, started googling. Indeed, there are a number of reputable sources that support not treating advanced indolent Lymphoma, taking a wait and watch approach.
Why go in with toxic, invasive, worse than the disease treatments, if your lazy ass cancer isn’t going anywhere in a hurry? (Of course my cancer has taken a little walk on the wild side to my vaginal wall and face - not as lazy as some. )
The idea of chemo and possibly radiation, freaks me out. I try to ignore the whispers about secondary cancers. But the idea of doing nothing is equally scary. I’m someone who couldn't even cope with a floating mortgage. I’ve always been locked in and secure. No daily scanning. No watching for a spike or a trend upward. No having to decide when or whether to act
I may not have the personality for wait and see.
I threw the questions and the websites at my friend Tae, a cancer researcher who adores gathering information as much as I hate it, and took no time to look into success rates for my Bendamustine and Rituximab (no hair loss) chemo combo .
I am both reassured and discomfited by how easily the drugs slip off Tae’s tongue. I am told my questions are perfectly reasonable, that I should ask the doctors how they arrived at their treatment plan.
Tae says one thing that pushes me even further to the treat now side of the equation. The greatest success and 5-year out survival rates (another term I hate – I know that’s how they measure this shit, and that after 5 they’re not really looking any more, but I’m keen on the 30 year out rates) is with patients who are in great shape when they undergo treatment. That’s me. At least I think it is. I’m a runner. I eat well. I have low blood pressure. And I’m asymptomatic (more or less– the hot dog does make me pee more slowly). Maybe I don’t want to wait until I’m sick to get treatment. But what if I don’t get sick? People live their whole lives with malignant crap in their bodies and never get sick from it. Why invite the toxins in?
How does anyone make these decisions? Do I seek other medical opinions? Do I put treatment on hold and investigate further? Do I get someone else to investigate further? Do I get this shit over with and move on with my life?
I’m someone who often says “ya, I need to think about that”, which really means "I have no desire or inclination to think about that, I plan to put it off as long as possible, and I certainly have no intention of giving you an answer any time soon."
Cancer is forcing me to change. I suppose I could skip this toxic train, and hop a later one. But when? Or I could ride a hemp and baking soda wagon. But it takes guts to go off the grid. One thing's clear - I don't want to be the driver. The train I’m on is huge and powerful, and oddly comfortable. It’s in motion, and there’s a good chance I need it to take me where it’s going. So why not go now?
Somehow I have to make this decision within the next week. What's the best decision? Maybe there is no best, no right, and no way of knowing for sure. And as for guts, it all takes guts. Guts I didn’t even know I had.