Submitted by KarenLynnn on February 2, 2012 - 4:12pm 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.
Thank you for posting. I've done three 60 mile walks for Komen and was just about to sign up for my fourth when the controversy happened. I'm still very conflicted. I'm happy that the decision was reversed and Handel resigned, but my faith in the leadership is shaken and, truth be told, I feel betrayed. People have been waiting for my reaction but I wanted to wait until things settled down and I could speak less emotionally. I don't know if I'll sign up for another walk but I do know I can't turn my back on the bigger picture.
Melanie Sheridan do you think she resigned because she disagreed with Komen caving to the public?
KarenLynnnMelanie Sheridan I think she was forced out. The Komen board needed to do something to get back in people's good graces and she was the sacrificial lamb.
KarenLynnn - it was nice to post this on my FB page. I appreciate you taking the time to redress what you thought was behind you in a way that helps several perspectives be considered. And, I'm appreciating the discussion in the comments section below. Salut!
Red Dirt Kelly thank you so much Kelly for sharing my story and for understanding why i needed to blog about it.
This was wonderful and helped me put my thoughts on this subject into perspective too. Thank you!
Bad Luck Detective thank you Suzie, I am so glad that Komen changed their stance and that PP and Komen can work together to save lives.
thank you so much for sharing your persepective, KarenLynn. I'm so happy you got the help and support you needed. This rift between Komen and PP, to me, just illustrates how critical both organizations are to making sure women get the health care and attention they need for this brutal disease. all of us have been affected. one of my closest friends, heather, died of a rare form of breast cancer just a year ago, after trying every available treatment and trial. she suffered terribly. i'm so glad you're doing well. best wishes...
Mona Gable i am not sure why i was spared while others aren't and i grapple with that very often. i guess i got lucky because my cancer was close to the skin and therefore allowing me to find it before it silently ravaged me. others aren't so lucky... and every day i am thankful that i am alive. :)
Thank you so much for this post KarenLynnn. I'm so glad you and Gina found each other.
Lisa Stone thank you Lisa. your post yesterday got me quite emotional. knowing that Susan is going through the same things that Gina did is very hard. my daughter suggested i follow whymommy a few months ago, and my first reaction was, i just can't go through this again. I am so pleased that you posted the Love Fest for Susan. And so grateful to @blogher for seeing that i had something to say.
I'm glad you are doing well. However, you know that those google searches are based on $$$???
PP provides screening for women who can't do what you did. They deserve a chance for a screening when our medical system can't provide one for them.
CroMom yes, i know that, but i didn't click on the paid links. actually, i never click the paid links when i'm looking for information. i look for links from people. i clicked on lots of links that day, and the year i was in treatment. i found the support and care on the komen message boards.
our medical system is very messed up right now. and has been for years. i blame the insurance companies more than any other source.. i.e. government, planned parenthood, komen, or whatever. the reason healthcare is not there for our working poor and unemployed is because of the exuberant rates the insurance companies charge. who can afford healthcare? insurance companies dictate what gets treated and how, and that is after taking our money first.
KarenLynnn: You have done a superb job of presenting a different perspective on Susan G. Komen that I was not focused on because of the frustration of the funding cuts. Your words and experience are very moving and I wish you a long life of only the memory.
Thank you!!
elaineR.N. every time i think i've put that year behind me, something jumps up at me and roars! thank you so much for you kind words and support. i hope that this all will work out and clear up once the inquiry is over.
Thanks for sharing your story KarenLynn, and for your civil discourse on this issue all day long. I really appreciate both.
Elisa Camahort Love that term, civil discourse.
Elisa Camahort thank you Elisa for coming over to offer your words of support. and thank you so much for syndicating me! i was pretty emotional yesterday. i admire denise for seeing that and getting me writing. i'm proud to be part of blogher. you ladies are awesome. i hope Lisa wasn't upset at my commenting over at her place.
KarenLynnnElisa Camahort No not in the slightest! As I said in my thoughts to Cynthia, there are very few other places online where I would be willing to have this discussion. I wanted to talk with you all -- as a woman, as a voter and as a constituent of these organizations, I appreciate the environment on BlogHer and wanted the opportunity to hear what you all are thinking. I really love your post.
Lisa StoneKarenLynnnElisa Camahort I loved Karen's post because I was able to get even just a glimpse of what women like her have to go through in their everyday life. I really had no idea. I met KarenLynnn here on BlogHer, and through our blogging and interaction I have come to know her a little more each day. :)
HomeRearedChefLisa StoneKarenLynnn Ditto :)
I just shared this link on Facebook and want you to know that I have been in and out of the Lisa Stone comments all day. I really appreciate your commitment to your stance and your clear, uncluttered way of expressing it. I'm glad you chose to tell the whole story you've been alluding to all day.
I should also be honest and tell you that, after a friend's diagnosis and education in all the things you're writing about a few years ago, I stopped giving any money to Komen for a number of reasons. It's also honest to say that I'm extremely glad they helped you.
Kizz thank you so much for understanding why i feel supportive of komen during this most difficult time. like it or not, pink reminds us now. it reminds us that 1 in 8 of us will get breast cancer.
This is all political and I have sent my money to PP. Will never give to an organization that is run now by the right. Sorry they helped you but I say no to them anymore.
madgew@live.com i guess i'm assuming "sorry they helped you" isn't what you meant? i am so glad they provided the forum for me to get educated and the friendships i made there with other fighters of this nasty disease.
karenlynnn So important for you to give another perspective on this story that is getting enormous coverage. I was inclined to jump on the dump Komen bandwagon, but your post has made me realize I need to do some more research before I can understand the issue. Thanks for telling a little of your story, and for urging people to avoid jumping to conclusions. The last thing we need is for neither Planned Parenthood or Komen to have the funding they need to help women.
isthisthemiddle thank you so much for understanding how i feel.
KarenLynnn You explained it in such a sincere, heartfelt way that I hope others will make the effort to investigate and consider the pros/cons before they cut donations.
Hello, everyone! Just reading through the comments following this informative and heartfelt post by KarenLynn and having read the others...is it possible the facilities of Planned Parenthood differ in the various area of the country? Is it also possible that SGK offered different levels of support as well? Just wondering...
Heavy thoughts on this page. It's wonderful for you to share. Thanks for your insights, Much Love, Fondly, Robin
SunbonnetSmart.com Robin, if you go to the susan g komen website, you will see they have so much information there. there is no charge for their services or for joining. we donated that year to breastcancerawareness.org, and men against breast cancer or whatever the name of the husbands support group is. there is more than one way to fight with pink gloves on.
I'm so glad they were there for you, karenlynnn! I may not agree with what is happening now...but I dearly hope that it gets sorted out so that women (and men) have access to the same support you had. I am so sorry to hear about your friend. I know that loss, my friend passed in September 2011 after a very hard 2 year battle. Hugs!
alienbody i am so sorry that your friend lost her battle. your loss is still so fresh. *hugs* it's extremely frustrating that in 2012 we can't get past the red tape to pursue the cure, to provide healthcare to all. and that politics decides things for us. shame.
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I'm not talking about paid links.
Dear Polish Momma, I didn't click the paid link, I usually don't click the paid links unless I am shopping. I clicked personal links, ones that were relevant to my search. And thankfully Komen provided the platform for us to go and educate, support and love each other.
Lola, I just don't agree with you, but I do respect your opinion. Once you are diagnosed with breast cancer, the color pink and the words "for the cure" take on a special meaning. I just wanted to explain how they were there for me, and my sisters.
Finona, I am so sorry for your loss. I shed quite a few tears yesterday for Gina. And as always, because I don't understand why i was spared and she wasn't. I wonder if your friend came to the message boards at Komen for support. We are all sisters, the survivors, and those who have died from this terrible disease. Pink raises awareness, as do the words "the cure". Breast cancer NEEDS to be at the forefront of medical research. 1 in 8 women will get breast cancer. it's time to take off the gloves and fight for a cure.
Eric, I believe that all this media coverage will save a few lives of people who may not have been paying attention to their bodies. Any publicity on behalf of breast cancer research is a good thing because it raises awareness
Maria, I agree with you. Indeed if you were supporting SGK just because they funded PP, then maybe you should have supported PP directly so the funds wouldn't pass through so many hands. Komen was there for me in the wee hours of the morning when i was sleepless from chemo. they provided the platform that enabled me to meet other sisters fighting the good fight and helped me deal with the ugliness of breast cancer
Danielle, I agree with you. It is too bad that this situation between the government and planned parenthood and SGK has happened and divided us as women. i just hope that all this news and publicity that this story is getting will maybe save a few lives.
Keiko, please don't assume that i assume anything. all i am trying to say is that SGK was a valuable resource for me when i was going through breast cancer. as i said, as a young teen, planned parenthood helped me too. lets wait and see how this story unfolds.
Fiona, if she searched with Google, intuitive searching could have led her results to include SGK and could have excluded PP, which a lot of people have complained about lately, that intuititive searching on Google by some is considered a form of censorship. Just playing devil's advocate with that thought.
Glad you got some comfort from other cancer patients. However, SJK is a big sham & huge money maker, and actively accept donations from corporations who sell cancer causing products. It is all about the $$$. They will play on your emotions, then put their hand in your pocket. It is called "Pinkwashing". http://next-level-nutrition.com/?p=6764
I am glad and grateful for @KarenLynn's recovery but she mentions as relevant SGK came up in her internet search, not PP. Has she considered that might be because SGK uses resources PP doesn't to make sure that is the case? Is she also in favour of Komen's policy of threatening non-profits with legal action when they dare to use the phrase "the cure" in their activities? I wish I could ask my friend who had breast cancer her opinion on this but she died on Sat. How many others have to?
Clearly, this is move designed to put women's LIVES on the line for a political stance. This is incredibly irresponsible.
Maria, with regard to Obama-care, it's the same right-leaning politicians that favor (and potentially influenced) SGK's decision that took it to court after court to have it struck down or whittled down to utter uselessness to the poor and uninsured. And with regard to mandated coverage for birth control, yes, we are upset and focused on that as well. In fact, Planned Parenthood was leading this fight. SGK's decision to pull funding is simply kicking a woman when she's down.
Besides, as I've also been saying all day, wasn't Obamacare supposed to take care of the poor and underprivildged to get them healthcare and screenings? Why don't those who are upset focus on that lack of action?
I've been talking and commenting on this issue all day. I absolutely support SGK's decision. Whether people want to hear it or not, whether they provide additional services or not (and it's been stated that not all PP clinics offer mammograms and screenings), Planned Parenthood is a very controversial organization. There are many of us who did not feel comfortable or like knowing that our contributions went toward a group that provides and funds abortions. The way I see it, Karen Handel removed a very left-leaning political stance, and has make SGK neutral. Susan G. Komen isn't going to stop cancer research, cure and prevention. If people were supporting SGK solely because of their ties with PP, then I fully encourage those people to donate directly to PP. I, and others, will now gladly make up for their lack of donations.
I'm disappointed that Komen pull the Planned Parenthood funding, especially since it seems out of the blue. Why couldn't they have let the grant cycle come to an end and then not renew - a better way to do things in my opinion. It does seem like the decision could be founded in political alighnments. However, I don't support the idea of defunding Komen. My support of that organization is not hinged on the grants it gives to Planned Parenthood. Yet, I do think together they serve women. Now folks feel divided. That's not good for women's healthcare on breast side or the reproductive choice side.
This will not be popular comment but this needs to be said. KarenLynne, while I celebrate your courageous journey and am so sorry for the loss of your friend, you assume that uninsured minorities or the working poor have access to something like Google or the internet. You assume that they've have the message of preventative education in their communities to take the initiative to self-screen.
To you or I, who come from a place of relative privilege, these 2 things seem like no brainers. To the working poor, to the uninsured - it's just easier NOT to feel for the lump or go Dr. Googling b/c they know it will only mean medical expenses they cannot afford when they have to worry about feeding their family, paying rent/mortgages, etc.
Planned Parenthood and Susan G. Komen each do noble, vital work for the women's health community at large and it's a shame that a political agenda has divided them on the spectrum of women's healthcare. At best, it's a political mess. At worst, it says that SGK doesn't value open access to preventative healthcare for ALL women. And it's a sad day overall for women's access to preventative healthcare in America.
I'm so sorry your friend lost her battle, and you lost her. How wonderful you got the help you needed when you needed it! I can understand why you'd want to support others going through the fight and why you'd feel gratitude to the Komen organization. However, it seems the organization has changed a bit the last few years. I wish they hadn't politicized what should be a women's health issue, and I'm troubled by their commercialism & financials, so I sent money directly to PP.
For anyone interested in Planned Parenthood's impact or for those folks who haven't had a chance to experience the full range of services, there're some moving testimonials at Planned Parenthood Saved Me:
http://plannedparenthoodsavedme.tumblr.com/
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