Friday, May 7, 2010

Advocate..

 
 
 Another guest blogger
When this whole thing started, meaning, form the moment I was told, "You have cancer." (and actually, those weren't the words, they weren't even speaking directly to me. They were telling my mom, and said, "She has cancer." and I just happened to be laying in the hospital bed next to her, drugged up from a 9 hour spinal fusion surgery, and overheard them. Either way, same impact.) and for quite some time after being diagnosed, any kind of cancer campaigning really rubbed me the wrong way. Pink ribbons made me angry. And I'll admit, even now, pink buckets of KFC for cancer just seems inane. Part of that is my opinions about the fast food industry, but something about the way cancer awareness is presented to the public, is a bit euphemistic, to the point of being cutesy.

But I'm experiencing, both with myself and through meeting cancer survivors, that once people reach a certain comfort level in their own situations, that there's almost a natural progression towards advocacy and awareness, and just wanting to help. 

My biggest topic, I want to advocate, and actually bring change to, is early detection. And not just to the public, but to the medical industry, as well. Here's a little background on me: I'm 29 now, I was diagnosed 2 years ago at 27. There is no history of breast cancer on my mother's side, my father's sister died of breast cancer at 50. I was 24 at the time, so breast cancer didn't seem like an immediate concern then, though looking back, I probably already had it. Plus, doctor's tell me that paternal genetics don't really factor in, anyway. Well, ok then.
 
But I wasn't a complete dullard. I had been doing self exams in the shower from the time I was a teenager. My mom had this model her obgyn gave her of this little squishy plastic breast with some, what I can only assume were, marbles embedded in it. It hung in the shower, and I felt it, and felt my own, and aside from it not even feeling like a real breast, I never felt anything even remotely close to this doughy, plasticine-like, marble filled maquette in my own breasts. Granted, I was just a teenager at this point, but I continued self exams throughout my 20's, and was told a variety of different methods for examining, and what to look for. I was told, "Lumpy, like oatmeal, was ok lumpy." Well, what kind of oatmeal are we talking about here?? I like my oatmeal lumpy. I was told not to dig around in the breast, that abnormalities would be felt with a flat hand. I was told pain is an indicator, but that premenstrual pain and firming was totally normal. And I was told that every woman has one breast that's larger than the other.

Here's what I did find: one breast was bigger than the other, and before my periods, it would get firm and painful, and the nipple seemed kind of anchored to the interior of the breast, where the other did not. I told my obgyn, who did an exam, and told me to lay off the caffeine. This was probably 6 months before I was diagnosed with Stage IV breast cancer. At that point my main concern was all the other pain I was having. Back pain, chest pain, trouble breathing. I went to several other specialists to address all these other pains, no one really came up with anything. Muscle spasm, was one guess, pneumonia, was another. One of the specialists even did a breast exam. He told me it was most likely Costochondritis, an infection of the ribcage, and it would go away. The night before I woke up unable to walk, with no feeling in my legs, and went to the hospital to learn I had a broken back caused by the metastasis, I remember standing in front the mirror looking at my body, and wondering why I was in so much pain. My whole chest seemed misshapen, and there were dark veins running in the direction of my left breast. Once I was diagnosed the oncologist even said that my tumor is not easy to locate. It was large, and flat, and just kind of blended in. Looking back, that firmness I felt around my periods was probably the closest I ever was to detecting it before it metastasized. But I did mention that to my doctor's, and was told it was pretty normal, just stop drinking coffee. So I don't know what else I could have done to catch it any earlier.

I recently reconnected with a friend and told her my story. She is 32, and said that she has similar symptoms with her breasts, pain, firmness, size difference, even chest pain. I don't want to make anyone paranoid, or turn them into a hypochondriac, so I just told her to see her doctor. She did... they told her to stop drinking coffee. Hearing those words again, made me shudder. I understand it would be unlikely, for a friend of mine to have the the exact same condition, but because I have it, there's no way I can sit here and say it's not a very REAL possibility. Because it is REAL for me. And the sad truth is that cancer IS almost that common.

So my dilemma is, what do I do with this? How can my story help? Especially since my story consists of me having next to no symptoms until it was already advanced! I don't know how that's supposed to help anyone? But I do feel the first step is putting my story out there, and seeing what comes from that.
 
 I understand the medical industry is not going to start doing mammograms on every 25 year old, with no maternal family history of cancer, who's breasts hurt occasionally. But maybe if people weren't only specifically looking for perfectly round marbles, or extra lumpy oatmeal, or knew that zombie veins on their chest might mean more than just poor circulation, and if doctors exams were a little less generic, and their patients concerns weren't dismissed due to age.... then maybe, someone, anyone, might not find themselves where I am now. And that would be something.
 
About the guest blogger:
Kourtney Logan Lampedecchio was diagnosed with stage IV HER2/neu positive breast cancer at the age of 27. Upon discovery it had already metastasized to her spine, deteriorating the T3, 4, and 5 vertebrae, requiring a spinal fusion surgery. Recently, 12 brain metastasis where discovered, and she just finished a course of radiation to treat those. Through it all, Kourtney continues to pursue her passions of spending time with her horse and dog, friends and family, who are her support system, and without them would be lost. She is also continuing to pursue her professional and academic goals of becoming a scenic designer for theatre, by working freelance in the Sacramento, CA area, and attending graduate school in the fall at UC Davis, where she is also currently undergoing treatment. She is now 29, and lives with her family in Placerville, CA. 
You can check out her blog at http://www.kourtneylogan.blogspot.com/
 

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