cancer sucks

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.

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.

365 Days of Carol Anne (Learning to Love Myself)

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Tonight’s post is dedicated to Angel, who apparently knows me better than I know myself.

Day 122

(no picture today, I’m not up to putting on a brave face)

You can thank Angel for tonight’s post. I was just going to go to sleep and allow this night pass without posting but a message from her inspired me to write tonight after all.

You see I haven’t had much to say lately because as the time ticks by I get more and more afraid. I’m terrified. I have less than 1 week until my treatments begin. I was supposed to spend the day in Cape May with my family on Sunday but our car broke down on Saturday night so we had to spend all day Sunday getting it fixed. I desperately wanted that time to have that day with my family.

You see, there exists the very real possibility that these treatments could cause brain damage (5%) or blindness or any number of other side effects including possible cancers caused by the radiation treatments themselves. After Monday I could very well never be the same me again. I don’t know how to cope with that. I’ve known the possible side effects for months but now that the time is upon me to submit to these treatments I’m terrified into silence. All I want to do is zone out and not think that on Monday morning I’m going to lay on a table alone in a room and have radiation shot into my head. I can’t bear to think that I may not be me again.I don’t want Chuck to spend the rest of his life taking care of me. What kind of a life is that for a person? What if I go blind? I love to read, I love to take photographs. I may never see Chuck’s beautiful face again or the ocean or little miss Cuppy.

I’ve been holding this all in and felt like I had nothing else to say so I just haven’t said much. I suppose Angel sensed this because she sent me a note tonight titled Checking In and simply asked, “how you holding up chickie?” After reading my reply in which I told her pretty much all of the above she sent the following message.

I want you to stand up…go ahead..I’ll wait…STAND UP!

now, you need to shout at the top of your voice “I AM PISSED AT CANCER AND IT WILL NOT BEAT ME!”

get mad and STAY mad at this bastard and then kick ass and take names during treatment

then…thumb your nose at Mr Cancer and tell him to go fuck himself, thank you very much

And so tonight rather than go to sleep without posting and disappointing myself and not being true to this year-long project I stand up (okay sit at my laptop) and tell you I’m afraid and I’m not feeling strong. It’s not a fuck you, but it’s a step past the silence and hiding inside my own head.

Thank you so much for stopping by every day to read and comment, I truly do love you all.

With Much Love,

~ Carol Anne

365 Days of Carol Anne (Learning to Love Myself)

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Day 60


It’s day 60 and I had hoped to be well on my way to being done with all things cancer by the time this post came around. Instead I’m in limbo. I feel like shit. I have a cold and I made my mother cry today.

If you recall I had to have a CAT scan of my neck a few weeks ago. The doctor called to let me know that I have two slightly enlarged lymph nodes and need to have a PET scan before anything else goes forward to rule out that the cancer has spread to my lymph nodes. He says it’s rare that basal cell cancer spreads but he has to rule it out before anything else can go forward.

I’m scared, I’m sure my husband’s scared and like I said I made my mother cry. I feel like shit. As if my family hasn’t been through enough with me now I have to go and throw a monkey wrench in everything. *sobs* I told a friend that I was feeling defeated and she said that I should get angry. That I should use that anger to my advantage to help me fight. I know she’s right but right now all I feel is scared and exhausted. I don’t want any more tests and I don’t want any more dyes and radioactive stuff pumped into my body before I’ve even started radiation treatments. I feel like I’m going to glow in the fucking dark. And who knows what all this is doing to me in the long term.

I know that I should want anything and everything that helps me get better but I’m tired of all this nonsense. I’m tired of being poked and prodded and examined and scanned. I’m five months in and I’m done with all of this. I don’t want any more. I just want this whole nightmare to be over and I’m terrified now that there’ll be more to be terrified of. I’m exhausted and I feel like shit.