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.

3-Day Hooray

The 3-Day walk was amazing. Dacca went with me for the early morning ride and drop off at opening ceremonies. We got a great picture with our team sign. Thank you to everyone who came out to support me, including Amanda's Girl Scout troop, Young Survival Coalition sisters and my mom. My sister-in-law, Kami, created the best cheering station, complete with a pink balloon arch at the top of a steep hill. I met up with other people I knew, met some new people along the way and walked some of the miles alone. I opted not to go to the closing ceremonies without Dacca. The whole experience was powerful and emotional. I loved it and am in for next year. Come and walk with us September 16-18 2011. Go Team Double D!

Cheering

If you are interested in coming out to the 3 Day route to cheer me on, go to http://www.the3day.org/ and check out the spectator information for Seattle. There are cheering stations along the way. I am so excited!

Going Solo

My teammate Dacca and I have trained so hard for the 3 Day Walk. Unfortunately, Dacca broke her leg last week and won't be able to walk with me. It is fractured in two places and she has to have surgery this week. I am going to walk. Hopefully she will be well enough to make it to closing ceremonies to join me in the survivor circle.

New "Cancerversary"

Two years ago today was the date of my double mastectomy surgery. It was the day the cancer was taken out of my body and I became cancer free as far as I know. I am celebrating this day as my "cancerversary" because it makes more sense than celebrating the day I was diagnosed, which was one of the worst days of my life.

Celebration Aboard the Oosterdam

I attended a survivor brunch aboard the Holland America Oosterdam cruise ship yesterday. It was a nice afternoon (wine with lunch - always a bonus) with friends and YSC sisters. It was also a nice PR event for Komen and Holland America. Picture an entire dining room packed full of survivors. It feels a little odd to be honored in this manner. The ship is all decked out in pink. Pink balloons everywhere. Everyone is wearing pink, including me. There was even pink champagne at the end. Rah-Rah survivors... looking around the room I thought to myself... I wonder if half of us will make it. Are we really survivors? Aren't we really fighters?

3-Day Update

The Komen 3-Day Walk is less than two weeks away. I am getting excited! Training has been time consuming! It takes hours and hours to walk 18 miles, my longest training walk so far. I've done 18-14-10 mile walks back to back and I feel ready. Bring it on! I've learned more about the route. We are starting in Redmond and walking to Everett the first day. Team Double D (Dena and Dacca) will be taking a town car to opening ceremonies. Why not? Who wants to wake up the husband and kids at that hour? We are going to have the driver stop at the Starbucks drive through, as we are getting on the road at 5:00 a.m. and we need our coffee! The Girl Scouts will be out there cheering us on Friday. I believe the route goes right by my brother's house the second day, which is cool. Thank you again to everyone who donated so I could walk. I've raised close to $3,000 for Komen!! I saw one of my Young Survival Coalition sisters yesterday and loved the t-shirt she was wearing. It said: F*ck Awareness Find a Cure. (the letter U was a pink ribbon).

3-Day Training

I hooked up with some of the teams in the area for training walks this past weekend. I walked 13 miles on Saturday and 10 miles on Sunday. Thank goodness for well-fitting shoes, Thorlo Experia socks (the best) and lots of Advil! The other survivors and walkers inspire me.

Good Follow-up

I saw my oncologist for another three month follow-up appointment and all is well. He did some blood work and an exam. I always get anxious because I know he's looking for something, but the only thing that was of any concern was the slight fluid retention on my left side. I haven't heard back on the blood work yet. He was happy to hear about my training for the 3 Day walk. I told him about my 13 mile training walk last week and he said that if the cancer was back I would not be able to walk 13 miles. My fear is that it's back and we just don't know it yet. My fear stems from the fact that I did not have a "complete response" to the chemo. The cancer was still active when they removed it, which is why I had more chemo after the double mastectomy surgery. The chemo should have killed any stray cancer cells lurking in my body, but who really knows. I could make myself crazy thinking about it and try not to.

Happy Birthday

Happy Birthday to me! I am thankful to be alive and well and celebrating a birthday. My day started with purple balloons & sunflowers and ended with a nice dinner out with Austin & the kids, followed by a big hunk of chocolate fudge cake shared by all. Yum. I love birthdays!

Thank You!!

My fundraising goal has been met. Every single donation is much appreciated and it all adds up for a very good cause. Thank you!

Why We Walk

We walk because we must. We are strong because the journey demands it. Together in body and united in spirit, we lay down our footsteps for this generation and the next. This is our promise: a world without breast cancer.

Fundraising for the Komen 3 Day Walk

This year, I'll be participating in a very special event called the Susan G. Komen 3-Day for the Cure. I'll walk 60 miles over the course of three days with my friend Dacca, also a survivor. Net proceeds from the Komen 3-Day for the Cure are invested in breast cancer research and community programs.

I've agreed to raise $2,300 in donations, so I need your help. Would you please consider making a donation of $25? If 100 people donate $25 I will exceed my goal! Keep in mind how far I'm walking and how hard I'll have to train. You can give online at http://www.the3day.org/ or follow the link on my blog to visit my fundraising page and make a donation. You can also call 800-996-3DAY to donate over the phone.

I was diagnosed with invasive stage 2 breast cancer at the age of 41. I went through four founds of chemo and had double mastectomies. I am now in remission and consider myself a survivor. It has been fifteen months since my last chemo. Many of your supported me when I was going through my battle. Thank you! Every day I hope and pray the cancer is gone forever.

Everyone knows someone affected by breast cancer. I don't want one more person to hear the words "you have cancer". One person is diagnosed with breast cancer every three minutes in the United States and breast cancer is the leading cause of death for women in the United States. I hate cancer. That's why I'm walking so far. To do something bold about breast cancer.

I hope that you'll share this incredible adventure with me - by supporting me in my fundraising efforts. Thank you in advance for your generosity.

No Surgery Today

I canceled my expander surgery and am looking into a different reconstruction procedure.

February 19th - I Like This Day!

Friday, February 19th 2010 - I am officially one year out from my last chemo and had a G&T to celebrate! I'm headed to the YSC Conference in Atlanta next week. Yahoo!

Two Years

Today is the day I was diagnosed two years ago. January 14th is my "cancerversary". I am officially two years out. I hope to have so many that I forget to keep counting!