Sunday, September 29, 2013

Inspiration - but not the fun kind

It's been awhile - almost a year, to be exact, but I'm inspired again. Inspired by the influx of new folks to Knitters With Breast Cancer, my online support group, and realizing that things haven't changed much as they struggle with the exact same decisions and issues that I did when I was newly diagnosed. I'm inspired by the much-dreaded pinktober's early start, with its pink awareness crap in everyone's faces. I'm inspired by tomorrow's visit to UAB for a 6-month oncology check and my first post-cancer MRI. I'm inspired by too many BC sisters who are dealing with recurrence and are now considered stage 4/metastatic, and the knowledge that MBC is desperately underfunded and that's where we need to point our breast cancer awareness. I'm inspired by being diagnosed with lymphedema, which both my oncologist and my plastic surgeon missed (and which is a whole 'nother post). So lots of inspiration, none of which I particularly want.

Last Sunday I had an ER scare. I had sudden, sharp pain in my sternum, along with nausea and dizziness. After a couple hours of tests, I was sent home with a diagnosis of costochondritis. While this is likely the case, two things scare me: the first, this was my friend Brenda's original diagnosis before they discovered that her pain was due to cancer in her sternum, and second, it came on suddenly and resolved within about 48 hours, which isn't the norm (though when I've ever been the norm I have no idea). I'm told the MRI "sees" the chest and sternum, so if there's anything going on I'll know by tomorrow afternoon. In addition, I found a lump in my shoulder, which my orthopedist says is likely something-or-other with my acromioclavicular (AC) joint - basically an injury (except I didn't injure it). I have an MRI for that on Tuesday; he said that while he'd always do an MRI, with my history it's vital. If it sees what he expects, an injection may be all the treatment I need. I'm just so tired of there always being something, and while that's been the case much of my life, post-cancer everything carries a much heavier weight.

Most people consider going to the doctor when something hurts or changes. Sometimes we dismiss it because we're getting older, or it's just a cold, etc. But here’s the thing: for those of us who have/had cancer, it's completely different. We are forever changed - we've lost an innocence we didn't know we had and gained fears that, while time may dull somewhat, will never go away. We all cope a little differently, but we all experience the fear. Logic doesn't help, things like "the odds are..." don't help, and pats and "there there, it'll be fine" doesn't help. My coping strategies for this new normal are things like pajama days, antidepressants, copious amounts of knitting and crochet, tears (I wasn't much of a crier before), fun-colored hair, a comfort blanket that I knit myself, sleeping with my stuffed llama and unicorn (both gifts from my son), and allowing myself to FEEL, even when it’s not “socially acceptable” and others want me to be positive and move on. I do the best I can, and while it may not be “enough” sometimes, it’s what I have. I also subscribe to The Spoon Theory because right now, I have very few emotional spoons and I am gonna be damned selfish about how I use the ones I do have.

I'll have more to say in the coming month - about how to talk to people with invisible illnesses (and post-cancer definitely qualifies), about ways to actually help during pinktober, and links to articles and other bloggers who really "get it." In the meantime, I'm going back to my yarn and hanging with my boys, so I can get through the time til we leave for the long drive to Birmingham in the wee hours of tomorrow morning.