Sunday, February 23, 2020

Fear & Cancer

Awhile back, I read an article from The Mighty about someone who was not ready to say they were "cancer free". It's a great read. I personally choose to use the terminology "no evidence of disease." For one, it's precise, which I like in discussing medical & scientific things. For another, it feels less like a jinx. Because yes, I'm a wee bit superstitious and running around proclaiming myself "cancer free" feels like tempting fate.

Here's the thing - no matter how much evidence there is that there is no more cancer in my body, the fear is still there. There roughly 5% chance of recurrence - probably less due to medications. I see my oncologist on a regular schedule and labs are drawn almost every month. Tumor markers are monitored. Which brings me to something that happened last month. 

January saw a great oncology follow up she said my labs were great, which was nice because my lymphedema had flared up massively to cause swelling in just a hand and rarely, that's evidence of a cancer recurrence. The week after that visit was my usual shot & labs. Two days after the blood draw, as I was pulling into a parking space at work, they called. "Your tumor markers are elevated." And with those 5 words it felt like the world dropped out from under me. Tears started immediately. The nurse said it could be a lab error and to rule that out, I should get the test run again. So I made arrangements to take a PTO day, went home, got Jason, then went to their office.

We spent time the rest of the day doing things I wanted to do, and I cried off & on. I had a lot of anger, too, because seriously. What the fuck. The whole point of having my breasts amputated and going through radiation that made my chest look like the worst sunburn of my life was to reduce the risk of this bullshit. How could things have changed so much from one month to the next? They told me it could be Monday til I got results. Things like "it's probably a mistake" and "try to relax" were...not very helpful. Mostly. I mean, the difference in the value was high enough that it was either an error or I was probably dying. (Marker for December was 18, January was 46. Acceptable value less than or equal to 30.)

Friday morning, they called as I was about to leave for work. I answered because, if they said I had cancer again, there's no way I was going in. However, it WAS a lab error. Now, before anyone starts to question - let me explain how this could happen because I politely asked them. The samples are processed off site, so if ANYTHING goes wonky with the sample, it can affect the results. Nicely, the tumor markers were lower than they were the previous month, (13), so that's something cool.

For almost a full 24 hours, I thought my cancer was back. 

I didn't tell a lot of people about this or talk about it much. Not even when it was in the past and I found out there had been a mistake. Cancer is the fucking worst. Even when it's gone it lives in your head, your emotions, and the trauma response for me was lighting fast automatic. 

Maybe one day I'll be someone who says they're cancer free, but that is not this day. Anytime in the near future isn't looking good either.

a wonderful card given to me by a close friend.