My first inclination is to look at my girls. They’re so young and innocent in this picture. They have their whole lives in front of them to do with what they please. The eldest has a smile and sparkle in her eye that light up a room, and while you can’t see it in this picture, the youngest’s giggles were contagious, her expressions, priceless. They were, and are, my everything. And I am so lucky to be able to share these adventures with my husband.
And then I see us in this picture. We look like babies ourselves. And while from this picture you may not see the toll that my cancer took on our family, I know it’s there. Next month marks 16 years since I was diagnosed. 16 years. How is that even possible? But in the same breath I can tell you that it seems like a lifetime ago, until situations pop up and all those emotions and fears jump back to the surface. Emotionally, I am currently in pop up mode.
About two years ago I was having biopsies done for my autoimmune/inflammatory disease. I have the slash in there because the medical world is constantly fighting over if Sarcoidosis is an autoimmune disease or an inflammatory disease. And when I say constantly, I mean constantly. To the point of when I go on my support page on fb (because damn, you need support when you have this disease) they have started arguing over the same thing. How about this? How about we focus on trying to find a cure for the disease and find treatment that doesn’t make you feel like shit all of the time, or make you gain 50 pounds, instead of wasting time fighting over if it’s and autoimmune or inflammatory disease? Let’s start there. But I digress….
Back to the biopsies. I never worry much about the results of the biopsies because they always come back as Sarcoidosis. Until one day, they didn’t. The doctor called me to tell me that an area where I had radiation from breast cancer tested as having atypical cells. Now to clairify, atypical cells does not mean it’s cancer. They are just different. But also to clairify, it does increase the risk of turning into cancer. And because of the radiation, I am at risk of developing angiosarcoma http://sarcomahelp.org/angiosarcoma.html (in case you want to read up on this tricky type of cancer). When I heard the doctor say something other than Sarcoidosis, I could feel all of my nerve endings jump. Just these tingles going through my body, throwing my back to 2004 when my cancer journey started. I felt my brain go into to hyper drive. Could I go through cancer treatments again? Did I even want to? And the girls. What do I tell the girls? And how will it affect them? And what do I do about work? Do I work through it all again like last time? But this time my job is very physical, could I even do it? That is just a snippet of what my brain went through within minutes of hanging up the call. The only information I had was the my previous oncologist was going to be contacted and an appointment was going to be set up with him. Back to the Gonda building, floor 10 at Mayo. This was all surreal. And painfully familiar.
I saw my oncologist, whom I absolutely love and trust 100%. And there was a plan. The plan was to do nothing. ??? While every fiber in my body just wanted the rest of the area that contained more atypical cells to be removed, and after a lot of back and forth in my mind, I understood why. If you remove all of the area that has those bumps of atypical cells, there is no way of knowing if they are changng. Accepting it was hard, and still is. Knowing there are some little cells in my body waiting to do something, or nothing at all, sucks. The unknown sucks.
After a while the little bumps I felt on my skin went away. The saying of out of sight, out of mind holds true. Every once in a while I would feel around for them and as the time went on of not feeling anything, so did the fear. Until yesterday. I found more bumps and it was just a reminder that these atypical cells are hanging out in my body. I honestly believe that one never gets over that fear after having cancer. It can lay dorment, and you may not think of it as often, but it’s there. I am trying not to focus on those bumps, but it’s hard. So I write about it, to get some feelings out, and in time I’m sure I’ll go back to not checking for them daily. That’s all I can do