muscle flap surgery

Don’t Feed the Bears & Don’t Make the Bald Woman Uncomfortable

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I’d like to share a bit of advice with you all tonight…

Please don’t feed the bears and please don’t make the badly scarred and bald woman feel (more) uncomfortable (than she is).

I just must attract people, odd people. That’s all there is to it. I’ve had two uncomfortable experiences over the past two weeks and I was polite to both people when I really didn’t want to be.

Last Thursday at the home, dad’s social worker asked me where I got the tattoo. I don’t have a tattoo but I knew what he was talking about because he’d just walked up from behind me so I knew he meant my scar. I had surgery in December 2011 to take my Trapezius muscle from my back and turn it upside to put on my head to cover a hole the radiation wore in the new skin on my head. It left a pretty gnarly scar that makes me feel deformed and maimed. So I’m less than receptive to conversations about my scar from strangers who walk up and glibly ask me stupid shit like, “Where’d you get the tattoo?” He had a pronounced limp, I didn’t walk up to him at any point during dad’s stay and say, “Dude! Where’d you get that limp?”

Then today we were eating lunch at the diner after my doctor appointment and an older woman walked up to me and asked me if I was in chemo. I told her no and went back to eating because I sort of wanted the conversation to end there but she went on to tell me about this local hairdresser, Martino who gives away wigs. I politely told her I knew about him and again hoped she’d go on her merry way but she continued talking, telling me she’d had breast cancer and lung cancer and that she’s a two time survivor. I offered niceties and went back to eating and still she continued on asking me about my cancer, wrongly assuming that I have breast cancer because of my pink scarf. I told her a brief version of my story and said I was two years cancer-free (and I just know she was dying to ask me how I’m still bald if I’m two years cancer-free) before she finally left our table but not before grabbing my shoulder and saying, “God bless you.” The “God bless you” was what sent the whole thing over the edge, I don’t want to feel pitied and she was the second person to do it in two weeks. The social worker said to me as he was walking away, “Wow, you do good for being here all day [after having had brain surgery.]” ß the part in brackets was implied by the look in his eyes.

Now I know the social worker didn’t mean any harm and I know the woman today just wanted to let me know where to get a free wig but I don’t want to be a circus animal (I don’t like to be on display on my very best days) and I don’t want to be the cancer patient poster child. Sometimes I want to sit down and eat lunch with my husband and not be reminded that I’m bald or of what I’ve survived and sometimes I want to stand on the porch with my father and not be reminded that I’m hideously scarred.

It’s hard to feel normal or have a sense of normalcy when you wake up every morning bald and badly scarred so please don’t walk up out of the clear blue sky and ask someone about their scars or their bald head. Those are conversations to be had in the right setting when the mood/energy is right. My reality is there every time I look in the mirror so please don’t feel it’s okay to bring it up just because you want to know or feel like talking.

PLEASE NOTE:  Close friends and family this does not include you. If you want to sit down and ask me about how it feels to be bald and scarred and you’re not afraid of a few tears I’m an open book as anyone who has ever read my blog knows.

Life After Cancer: A Fender Bender

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I know, I know, I’m supposed to be off of the Internet for a month. Well I interrupt this regularly scheduled experiment with a (quite literal) bump in the road.

We were in fender bender this morning, well yesterday morning by now. It was a minor accident, we were hit from behind at a red light. But because I have a titanium mesh plate in my head, had a blood clot in my brain after that surgery, a TIA from that blood clot and have had multiple skin grafts and 32 radiation treatments I decided a trip to the ER was warranted when I could not get my neurosurgeon on the phone and he was not in his office. I was scared to death the jarring from the accident could have caused damage to the plate.

No airbags were deployed and I didn’t hit my head or anything like that but I didn’t know if the force of the accident could possibly move or jar the plate. I knew I felt fine but there have been so many set backs and so many unexpected twists have popped up during this journey that I didn’t really know how to feel and I didn’t want to take any chances. As someone else who has experienced and lived with cancer said, minor doesn’t really mean anything when you’ve found yourself on the wrong side of the odds. I was terrified they’d find something wrong and I’d end up back in the hospital again for something I thought was minor.

Thanks be to God, I didn’t need a CAT scan or MRI. All of my neurological tests/reflexes were fine and we were out of the ER in less than 2 hours, which has to be some sort of land speed record for ER visits.

We are both fine, I’m sure we’ll be sore later but for tonight I find myself fighting anxiety and feeling blessed that the accident was minor.

Because I Promised I’d Always Openly Share My Truths

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I’m feeling a little raw tonight. When I ended the 365 Days of Carol Anne blog on December 31, 2011 I decided not to write about my health and/or assorted medical hijinks. I suppose I was a little delusional that with that declaration that the cancer journey would slow down or come to a close. When I started writing about my surgeries and my cancer I promised I’d always share my real and honest truth so tonight I share with you my real truth at the 2 year, 8 month, and 2 week mark. Things are not perfect and I’m feeling tired and a little ugly.

It’s been 2 years, 8 months, and 2 weeks since I walked into the ER on October 11, 2010. It’s been 2 years, 8 months, and 12 days since my first surgery. Since October 11, 2010 I’ve spent 20 1/2 days in the hospital and 4 1/2 days in a rehab (aka nursing home), I’ve had had 6 surgeries, 32 radiation treatments, I’ve lost count on the total of MRIs, blood work, and doctor appointments I’ve had since that day.

I’m tired, tired of feeling like I live in doctors’ offices, tired of scheduling my life around doctor appointments and medical tests, tired of being bald, tired of not being able to wear a wig and sad that my hair will never grow back. It’s been 2 years, 8 months, and 12 days and after 3 skin grafts and 1 muscle flap surgery that leaves me with limited use of my left arm there are still 2 spots on my head where the skin has yet to fully grow back. I saw the plastic surgeon on Monday and the advice is always the same, just keep babying it along, it will get better, blah, blah, blah.

I’m so grateful to be alive and to be cancer-free, but there are days when hope for better days isn’t enough. It’s hard to keep fighting, it’s hard to keep trying to be positive, and it’s hard not to feel ugly or disfigured.