PINK-tober

In my opinion, this woman nailed it. One of my survivor friends posted this on her facebook page. I lifted it from there. I love this woman's words. I could have written this myself (with the exception that I'm triple negative and have not yet had reconstruction).

I Embrace the Pink But Am No Fool
by Marcia Hahnfeld Deitrick

Many survivors hate Pinktober awareness month. I do not, and I am a survivor. I love the pink stuff, and the awareness campaigns, but I am no fool. I know there is NO cure. I know we need a CURE more than we need AWARENESS. While we're looking for a CURE for us though, the rest of the public needs to be made aware because early detection saves lives. I'm worried about them.

Sure, everyone knows someone who's had breast cancer, but most people don't know the realities of breast cancer. Breast cancer is not the "pretty in pink" disease that all the October gift items make it look like. Breast cancer is not a pretty pink stuffed animal, or a Barbie doll with huge boobs and long blonde hair wrapped in a pink awareness evening gown. Breast cancer is mastectomies, chemo, radiation, infections, heart damage, scars and for many of us it is ultimately death.

I have cosmetically "great" reconstruction, but great isn't real. Great is still criss-crossed scars. Great has little to no feeling between collar bone and stomach. Great is completely non-functional, with the exception that it prevents me from having to wear the prosthetics that I wore for ten months between my bilateral mastectomies and the beginning of my "great" reconstruction. So the only functional purpose that my reconstruction serves is that it keeps my shirt from sagging in the front.

Getting this great recon was no easy feat either. First they took the real ones, and left me flatter than a board for 10 months. Then they separated my chest muscle from my chest wall and shoved a couple flat whoopee cushion looking objects called tissue expanders in there and sewed me shut. Then on a weekly basis for several months they jabbed a needle into the metal port of each expander and injected saline to stretch my skin until it reached the right size. This was a painful experience repeated on a weekly basis. It caused muscle spasms, chest and back pain and a general inability to sleep or be comfortable. Once my expanders were appropriately expanded, then I had another surgery to remove them and replace them with the great silicone implants that are currently holding up my shirt. Oh, and if you aren't already grossed out enough.....mastectomy patients often don't have enough skin and real tissue to cover the expanders/implants. So guess what? I've got cadaver skin under my own skin to help keep these things in place, and to keep them from poking a hole through my own skin. Yep, that does happen sometimes. Not to me though, thanks to a dead skin donor.

Breast cancer also took all my internal female organs. The majority of breast cancer tumors require estrogen to grow. When your tumor is 93% ER positive, estrogen is not your friend. No ovaries for me. That wonderful anti-estrogen Tamoxifen? Oh yeah, it made sure my oncologist and gynecologist insisted that my uterus and cervix go too. Why? Because one of the side effects of this anti-breast cancer drug is uterine cancer. So, I'm chronologically 43, but live in the body of a 53 year old. Oh and that Tamoxifen, well after two years it mottled the maculas of both my eyes. So I'm off it, and Arimidex. Arimidex is great right? Well, sure. Other than the severe arthritic bone pain it causes. I stand up each morning on awakening and almost fall down because my feet and ankles are so stiff. After 10 or 15 minutes of shuffling around though, I can eventually walk so it's all good.

I'm going to live though, right? Well, maybe. No one can guarantee me that. I had a big old 2.9 cm tumor. Mammograms ideally find stage 0 tumors that measure in the mm's not the cm's. My tumor was already a stage 2 when it was found. Ten years of screening mammograms failed me. I still want the rest of you to get your yearly mammogram. They do save lives. They aren't perfect however, and we do need better screening technology. There is NO cure. Surgery is not a cure. Chemo is not a cure, Radiation is not a cure. Tamoxifen is not a cure. Arimidex is not a cure. They are only methods of keeping us alive for as long as possible while living with breast cancer. Until I die of something else, no medical doctor will consider me cured. Breast cancer cells can hide in the body before making themselves known. So although I walk around thinking I'm a stage 2, I may already be a stage 4 (there is no stage 5), or I may remain a stage 2 and die of a heart attack at the age of 85. Not knowing if there are still any cancer cells floating around my body is part of the fun of breast cancer. It keeps one in a constant stage of "I wonder if........". Oh yeah, my 10 year survival rate sucks in comparison to the 5 year version. Breast cancer doesn't stop once you reach the 5 year survival mark. It loves to hang out and bide it's time. I think Arimidex and I are going to be hanging out together for a long, long time. As long as I'm still here though, that's cool.

Now I'm going to let you in on some breast cancer secrets that most people outside the "club" usually don't know:

1) The chemo that is supposed to keep us alive can kill us. It can cause heart damage that may take months or years to manifest, or it may cause immediate heart failure. It can cause life threatening allergic reactions. That's why I was doused in steroids before each treatment. Some breast cancer chemo causes leukemia. Chemo weakens the immune system to the point that some of us die from opportunistic infections. Some breast cancer chemos cause permanent neuropathy in the feet and hands. Some damage our bones and cause osteoporosis. Chemo fries the ovaries, and brings on menopause which is often permanent. Chemo took not only all my hair, but it also sent me to the ER with tachycardia, gave me respiratory infections with every dose, caused a painful folliculitis skin infection on my bald head, shrunk my gums to the point that my front tooth veneer fell out of my mouth, and cooked my ovaries. On a happy note, my hair and eyebrows grew back (although thinner than before) and my dentist cemented my tooth back into my mouth.

2) Even if you have both your breast removed, you still have breast tissue and can still develop another breast cancer. That's because breast tissue runs from collar bone to ribs, and from armpit to armpit. My breast surgeon was a brilliant woman, but no matter how brilliant no surgeon can get every single piece of breast tissue out of a field that large. Many women develop recurrences on their scar lines or chest walls.

3) You don't need a family history to get breast cancer. Only 15% of breast cancer patients have a family history. The other 85% are the FIRST in their family to develop the disease. No one is safe, not even YOU. By the way, men are 1% of breast cancer patients; so they aren't safe either.

4) Breast cancer isn't just for old ladies, although your risk increases with age. You are never too young, and no getting diagnosed young is not better. Just because I'm young doesn't mean my body can better fight breast cancer. Quite the opposite in fact. It mans I'm much more likely to die. Breast cancer is more aggressive in women diagnosed prior to menopause. The younger the worse. All those wonderful survival statistics that show we can beat breast cancer were base on the old ladies, not on me. Those terrific stats don't apply to me or the hundreds of women I know that were diagnosed under the age of 50. We young ones scare oncologists. They know our disease is more aggressive, and we are more likely to die, but they don't have answers. They just hope and pray right along with us, and sometimes they cry too.

5) Early menopause sucks. The female body needs estrogen to maintain a healthy heart and bones (among other things). Menopause has thinned and dried out my hair, thinned my eyebrows and dried out my skin. The hormonal fluctuations caused by chemo, then Lupron, Tamoxifen and finally total hysterectomy are a roller coaster ride of unpleasantness not just for me, but those that share my living and breathing space.

Breast cancer sucks. Breast cancer maims. Breast cancer kills. I make sense of my experience by wrapping myself in pink, and spreading awareness through any means possible. It's the only thing that keeps me sane. Maybe someone I make "aware" will ultimately be art of the "cure" we so desperately need. Maybe I will save one person by making them aware of their own risk factors, and the importance of early detection.

Despite the unpleasantness of my medical experiences of the past three years and the road map of scars across my body, I am alive. Am I angry? You bet I'm angry. I've seen too many women die in the past three years. I've suffered too much pain, and lost too much. Am I bitter? No way. I'm alive, and that rocks. I have today, and I will make the most of it. I have hope for tomorrow. So screw you cancer, I'm still here and I'm still me.