Ok..so this is my blog and usually I talk about other things....but a many of you may know, I was diagnosed with Stage IV breast cancer in Dec. 1997, when I was 37 years old...my second bout of cancer. I was living with No Evidence of Disease until 2010 when I discovered it was in LOTS of places and I'm still fighting it. Try to promote studies which might provide a cure or methodology to prevent breast cancer....because as a stage IV Metavivor, I will have a shortened life....I don't want any more people to die from this. I don't want any more people to have to struggle with it. Stage V? There is no stage V unless, I suppose, you call it death.
So.... The Army of Women is doing another study, this time for women who have had a benign breast biopsy. (Why not men too, I don't know ....men get breast cancer too!) Here's the scoop:
Alongside the research team at M.D. Anderson Cancer Center, the Army of Women has just launched Phase 2 of the Discovery of Early Markers of Breast Cancer Study to investigate whether the amount of DNA damage seen in the cells of normal breast tissue might indicate future breast cancer risk. They’ve already collected data and tissue samples from women who had a benign biopsy but then went on to develop breast cancer.
NOW, they need women who had a benign breast biopsy but did NOT go on to develop breast cancer!
I've been meaning to write about this for some time. You see, October 13 was Metastatic Breast Cancer Awareness day. I wanted to digitize my wedding picture to start it...You see, October 13 is also my wedding anniversary. We were married in 1990, and in February 1993 I had my daughter...then in November of 1993, I thought I felt a lump but didn't go to the doctor about it...because no on in my family had ever had breast cancer, and why should I? I was only 33. In April, 1994, I was diagnosed with breast cancer. It was a 3 cm tumor with one lymph node involved..which I think made it stage 2B. It was much bigger than they thought.
Then in December 1997, they found micro-calcifications on the same breast which had the tumor. I had a mastectomy and discovered in January 1998 that there was a metastases to my bones.
I often say that I had the word "remission" because that gives the uninitiated the concept that maybe you're cured. It just means that there is no discernible disease. Once you are diagnosed with mets, you're stage IV and no matter how "good" you look and how your blood tests come back...it is considered a chronic disease and it can re-appear quite some time later.
Like 14 years later. Like me. My numbers are up and I'm hoping that the current Tamoxifen treatment will work. I really have trouble thinking about going back on chemo...I'm still struggling with the nerve damage I got from this last course of treatment which lasted 9 months. I'll probably never run again. Heck, I'd take that if I could have more time. I'd like to see Meg graduate...I'd love the thought of seeing her married....or started on her adult life. While others are looking forward to playing with grandchildren, I'm just hoping to make it that far.
Its an odd thing. Currently, there's a trial being offered for people who have metatastic breast cancer at the Roger Williams Medical Center in Providence, Rhode Island. They are testing to see if modifying T-cells (the cells in your immune system which fight the baddies like cancer) and modifying T-Cells and using Interleuken-2 with it will work. I'm tempted. I'm really tempted. But I'm also afraid. I don't know if trying to pursue other treatments would work. I'm not sure about traveling from Ohio to Providence, even though it is within 2 hours from where I used to live and I'm sure I could do it. What if it didn't work???? They talk about biopsying your tumor...well...it's in my bones...I suppose they could go after a biopsy on my shoulder, and maybe the sternum...but the others, the ribs and the vertebrae, well, they're a little tricky...and I'm not really sure how easy it will be to get to the spot on my pelvis...
Sitting and waiting in never-never-land....the word "remission" and "chronic" is beginning to sound better...at least you're still alive.
I regret that most of my married life, my poor husband has had to live with someone fighting cancer. I am saddened by the fact that my daughter doesn't remember a healthy mother...one who ran...and hiked and did a lot of really physical things. I'm even more saddened by the fact that she has to be afraid that she's going to get cancer...or that I'm going to die while she's in college.
But I'm alive. I will continue to fight. I hope you will too.
What is the Army of Women?
A program of the Dr. Susan Love Research Foundation, the Army of Women initiative is dedicated to recruiting one million women of all ages, ethnicities, with or without breast cancer, to sign up and participate in innovative breast cancer research studies. After signing up at www.armyofwomen.org, members are then contacted via email blast about new studies seeking volunteers. They can either sign-up for the studies online, or if they do not qualify, they are encouraged to forward the information to a friend or family member. Every woman over 18 is welcome to participate, whether a breast cancer survivor or someone never affected. There are currently more than 20 breast cancer studies seeking volunteers through the Army of Women. The full list of open studies seeking volunteers like you are listed at:www.armyofwomen.org/current.
Twice a year, the U.S. (and perhaps the world..I don't know) start "thinking pink." May, around Mother's Day and October, everyone reminds you to "think pink! It's Breast Cancer Awareness month (in the case of October). I wonder why they chose October, because it has Halloween, and is therefore scary?
Some of us have to think pink daily. Blazoned across my brain and everywhere else I am praying for a cure. The Army of Women not only works for a cure in research, as well as offering several mentoring possibilities, but it pushes for breast cancer prevention. Is it possible? I sure as heck hope so. Take a look atthis.
I support the Army of Women, and would like you to take a look at their website, even though I think that "Army of Women" is a little, um... sexist as men get breast cancer too. One of the things I really like about AOW is that they really get the word out and there are lots of research opportunities for people to participate in. Check this out here. If you qualify, or if you know of someone who qualifies for a study, please please please ask them to participate.
I am currently in the study for young women who are diagnosed with breast cancer. I was the first one in my family to win the cancer prize when I was diagnosed at age 33. I was married at age 30, and had my first (and only) child at age 32. I was 38 when I had a stage IV recurrence with bone metastases. I was cancer free until this year when I was diagnosed with multiple metastases to various bone locations in May, 13 years after the second diagnosis, 16 years after the first.
Unfortunately, I had a daughter. Why unfortunately? Because I'm afraid that she might get it too, and that was a motivating reason for me to join the AOW and participate in this study. With a sister, and both parents still living, perhaps studying my genetics will provide something so that they can figure out how to avoid it.
Don't get me wrong, I really really want a cure. Currently, I am living my life wondering if I should join soemthing , or buy something because I might not live long enough to enjoy it. In just a little bit, I will celebrate my 20th anniversary with my poor husband who has lived most of his married life with a woman who is no longer interested in sex because she had her ovaries removed when she was 38 to try to prevent a recurrence. He married a woman who ran, biked and swam, but for the last year can barely walk some days because of the pain in her pelvis because of the recurrence/damage caused by cancer and its treatment.
Even if you don't have stage IV, even if you don't have a recurrence, it is always the elephant in the room, a shadow hanging over your shoulder. Some days you think about it. Lots of other days you don't. If we could find out more to prevent it, it would be great.
Don't believe all of the stories about "well, if you didn't do this, or that" then you wouldn't have breast cancer. Listen folks, I was slender, I was active, I didn't drink, smoke, nor was I ever on birth control pills. For several years, I was a vegetarian. I ate healthy food, far more vegetables than most people. Yet, I got cancer. I gained weight. I struggle to survive. Finding out more, working to prevent it is definitely something I can support and hope you do too.
And the rose? It's Belle Story, a wonderful long blooming rose by David Austin, great fragrance, great color, long lasting and tough. Something I wish we all were.
