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. 

Reflections

As is stereotypical for this time of year, I've been doing some thinking. It started around Thanksgiving. We're not usually the sort to spend time on Thanksgiving discussing what we're thankful for, as we try to do that all the time, but this year was different. We ended up discussing how we're both thankful that I'm still around. Along with that, was gratitude I have that he found the lump. More gratitude to the medical team I've seen and continue to see, along with the friends that have helped along the way. 

Right now, I'm cancer-free.  Every night, I take a pill that acts to suppress estrogen. I'm not sure how long I will be taking it, I've heard up to 5 years, possibly longer. Each month I get a shot of another hormone suppressant and blood work gets done to check for tumor markers and it's been normal so far. I expect it to stay that way, too. 

I've had some bad days along with the good. But, this year I've felt more festive than I have in a couple years. Maybe it's some side effect of surviving a deadly disease, I dunno. But I sent cards this year for the first time in forever - just a few, but still. I made sure that for my birthday we went out & did something fantastic, rather than my usual quiet, movies and dinner thing. (And we did, the Arizona Museum of Natural History in Mesa, AZ is awesome!!) 

 

A few things come to mind recently that I did this year and am really happy about, one of which was reading at Amarise's wedding - which I agreed to do with enthusiasm & it was only on the morning of that it dawned on me that I'd agreed to public speaking. Not something I'd normally consider. But it went so well and I remain honored to have been a small part of such a gorgeous & touching ceremony. 

  

 I did a cosplay this year that I've wanted to do for a long time, but was always too shy to do it - Death from Neil Gaiman's Sandman series. Then I took that outfit & gave it a twist a couple weeks later at a con to great reactions. I still have a lot of work to do as far as eye make up, but I'm very pleased with it so far. (And shout out to the people who helped me with eyeliner! Woot!)

 

The group of friends I do panels with for Phoenix con each year has gained a smidge of notoriety in local geek circles and was invited to two other conventions this year, and another local one in 2019. 

There's other parts of my recovery journey - god that sounds so cliche - that I mean to post. Two drafts are started. I was trying to be chronological, but it's just not working out and some stuff still feels too raw to write about. I've changed this year, at least, I feel like have. I have even less patience for bullshit and/or drama than I used to. I've begun to look critically at things to determine if they still bring me a sense of happiness or joy and have ended up cutting out a few things as a result. Those cuts were painful, but necessary, and I am happier for them. Which was the point all along. 

The new year will bring new challenges as I enter what I call the maintenance phase. I also want to begin talks with a surgeon to make my chest totally flat. Come what may, I feel I've weathered the scariest part so far and have faith I'll make it through what comes next. 

I hope that everyone reading this has a good holiday season, that you get to spend time with people who care about you, and that you get to have some tasty food. Merry Christmas & happy holidays to you.