cancer

Crying Uncle

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I know people mean well and so they say that scars add character or scars fade (some don’t) or it’s better to be scarred than have cancer. I know they all mean well and that no one knows the exact right thing to say but no one but me has to look in the mirror. This is my 7th surgery over the past 4 years and from those 7 surgeries I’ve lost my hair, the ability to wear a wig, the full use of my left shoulder, and have now gained a big noticeable scar right there in the middle of my face. I’ve lost so much and so much damage has been done to me, it’s overwhelming.

I’m so grateful to God to be cancer-free and the rational me knows appearances shouldn’t matter in the grand scheme of things but yesterday, which I thought would be nothing, was my undoing. I accepted waking up with no hair, I accepted in order to help my head heal I’d have to lose some use of my arm, I accept the radiation treatments that saved my life also damaged my skin and I will probably never be fully healed, I accepted that my nose would have a scar from the first Mohs surgery. How much more am I supposed to just accept and be okay with?

Why is this happening to me? To whoever I’ve wronged or for whatever I’ve done to fuck up my karma so bad, I’m sorry. I’m crying uncle. For whatever it is that I have done, you’ve successfully punished me. I am broken. Please stop.

NaBloPoMo Day 26 — 3 Years Gone & I Am Still Not Whole

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I saw that a fellow blogger also wrote about this article today.

http://gawker.com/positivity-is-bullshit-when-you-have-cancer-1469975747

I think another misconception the media sells is the mistaken idea that once your treatments are over you’re perfectly healthy again — you’re not. You see these Cancer Center commercials and they show this man walking out ringing a bell after his last treatment, it looks like a parade. Parenthood’s storyline this year is Kristina Braverman running for mayor of Berkley just 1 year after surviving breast cancer, brave, radiant, hair all grown back and perfect.

I blogged my way through surgery and cancer and radiation treatments, I told myself I just had to be brave and think positive, I just had to face each day head-on to make it because that’s what you see on TV, brave radiant cancer warriors, inspiring men, women, and God help us children.

What they don’t show you are the down days, the days when the radiation machine is broken pushing your end date ever further from reach or the days when you have that first MRI and there’s something there but they don’t know what and your neurosurgeon walks out of the room leaving you weeping with the words, “Don’t let this affect your life.”

They also don’t talk much about radiation treatments. Hell, even I said to myself upon learning that I’d have radiation and not chemo, “Well I’m getting off easy it’s the easy cancer treatment.” 3 skin grafts and a muscle flap surgery later there are still areas of skin that have not grown back on my head, which keep me from keeping wearing a wig. The skin still healing from the first 2 skin grafts was damaged by the radiation.

They don’t show people telling you, “Oh you have the good cancer” or the asshole asking, “When is your hair going to grow back? Oh, it’s not? Well then when are you going to start wearing a wig?” As if it is somehow his business and I somehow offend him by wearing a scarf.

They don’t show you the endless scans and follow-ups and the overwhelming all-consuming fear every time you have a scan. Will it come back? Is this the time? Am I living on borrowed time? When will my number come up? 5 years is the supposed benchmark for survivorship but I can think of plenty of people who’ve had it come back many many years later, which leaves me to wonder if I’ll ever be safe.

After cancer treatments end and we’re “cured” society and the media somehow expect us to be radiant, baptized by the fire, saved and counting our many blessings. It’s true the strongest steel is forged in fire but I don’t think you’ll find a great many jubilant steel beams.

I am grateful for my life, and I hope and pray I never have to live through cancer again and I looked for answers and as to what the universe was trying to teach me but when I see pieces like this it just pisses me off. They should do a reality show, The Cancer Diaries and film cancer patients’ day-to-day lives. I think the world would see that most of us are not always negative nor are we always positive — Is anybody? — and that all of us are just trying to get through each day as intact as humanly possible.

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.