Why I Will Fight for Susan G. Komen: A Survivor's Perspective
By KarenLynnn on February 02, 2012
Five years ago in August, I took off my bra and felt a lump on my right breast. I wasn't a regular self examiner, so I wasn't sure if it was just a fibroid because my breasts are dense and lumpy and I've felt things before. But for some reason this seemed different to me. I asked my hubby to take a look and a feel and tell me what he thought.
His face said it all. "You should go get that checked out right away."
So I called to schedule an overdue mammogram at ProHealthCare's clinic about 2 miles from me and told them I was overdue and that I found a lump. They told me to call my family doctor because since I had found a lump, I had to have a doctor's order for a mammogram. Because this time it was different.
And so it began. The Great Breast Cancer Journey. I blogged about it, the entire time I was in chemo and radiation, with some pretty ugly pictures of radiation burns thrown in for good measure because I just couldn't keep all those feelings inside. My daughter Nikki encouraged me to start blogging the day I found the lump.
I Googled "I found a lump on my breast." The top hit was Susan G. Komen message boards. So I went over to SGK and joined and found the forum I belonged in and asked for advice. The message boards over there are filled with women on all different legs of their cancer journeys, from the ones who are terrified from finding a lump at midnight and unable to call a doctor till the morning, to women like me waiting waiting waiting to find out what to do next, what to expect.
I was immediately surrounded by love and comfort. The ladies of the Komen message board wrapped me up in their arms of love and care and told me what to do next. What to expect. Even told me what to do while I waited for the diagnosis after the ultrasound biopsy. And do you know, the person who gave me the most comfort who went out of her way to hunt me down on Vox and Flickr, was a dear sweet lady named Gina.
Gina had stage 4 breast cancer, the stage that our friend @whymommy is at, and she reached for me. Gina was on some pretty powerful chemo and had a total mastectomy. She made me laugh and we cried together sometimes and we both were photographers -- I was a beginner, she was much more seasoned than I. She loved to photograph birds and they were my passion too but I loved flowers more. She would encourage me, no matter how sick I was from chemo, she'd say go take a drive, find something to shoot. Take your mind off of this.
Chemo makes you wonky in the brain and it is very disturbing. The oncologist didn't tell me this. The Komen message boards did. And then the gals there introduced me to the term "chemobrain" and I laughed and went hunting down "chemobrain" and was educated through Komen research that chemobrain actually does happen to women. Chemo coupled with the stress that knowing you have cancer and watching people drop out of your life because they can't handle you being bald and sick, well it all makes your brain wonky. Whew, I wasn't alone.
And then the burns. I had 31 days of radiation. Daily radiation. After a week I developed a raging case of yeast underneath my breasts and the nurse at radiation said, "Tthat's not from the radiation." Where did I go? Back to the Komen boards and links. Yeast infections are common from women who've gone through chemo and then onto radiation. Because chemo messes with your natural cells, your normal cells get killed too. So my skin may have had yeast before but the natural processes of the body fight to keep it balanced.
And then lets talk about what it does to your marriage. I forget what the stats are but many married couples end up getting divorced after a breast cancer diagnosis because their husbands (or wives) just can't handle the stress of the ugliness that is breast cancer. Again I went to the boards. I had seen so much sadness, so much love, so much support in my husband eyes, and I wanted to help him to help me through this.
The ladies and gentlemen of the SGK boards pointed me towards the book Breast Cancer Husband. Which was chock full of advice for him and he read it cover to cover in a day. He learned to tell the bill collectors that called because we were late on a payment for whatever to say, "My wife has breast cancer, I am so sorry I am late, it's just been a mess for us." and we got late payment fees and interest charges waived because this man took the time to write the book for husbands. And I learned about it on the SGK message boards.
I survived. We survived. There is no way on this earth that I could have made it through this journey without Susan G. Komen, and what it represents to me and the services it provides. For me, this was mainly the message boards. But I saw others guided too... women with no health care were guided to ask for experimental treatments and trials - which are free to them.
The reason I am feeling so passionate about Susan G. Komen is because of the role they played in my life during the most difficult period I've ever faced. I'm not sure how I feel about them pulling their funding to Planned Parenthood, but until the investigation is over, we can't ditch the baby with the bath water. Komen plays a vital role in helping women faced with a breast cancer diagnosis.
Planned Parenthood has its place in this country, thank God for Planned Parenthood, or I would have a few much older children. My mom didn't take me to the ob/gyn when I got my period. My first female check up was at Planned Parenthood. They put me on birth control. They were kind to me.
But lets face it, they don't do breasts or breast cancer treatment. Sure they "screen" but do you know what a screening is? It's a doctor doing the same exact examination on your breasts that you are supposed to do monthly. If you don't do them, then yes the "screen" could possibly be the difference between life and death. So thank you Planned Parenthood for doing that.
Many will argue that yes PP will help uninsured women get mammograms and treatment, but as someone who was faced with a breast cancer diagnosis, who googled "I found a lump", PP did not come up on the search. Komen did.
My dear sweet Gina passed away. It's been over a year. I go to her Facebook page and tell her I love her and I thank her for her unending support to me, a stage 1 breast cancer patient while she was DYING from the disease.
Thank you Susan G. Komen for providing the place, the information, the fellowship, the forum, the message boards, thank you. I survived and I did it with support from the other members of SGK.