Monday, March 9, 2009

"My Cancer" and other verbage I hate

Gosh I hate this picture. For some reason, the Komen hat I got in 2003 had a problem with the brim...and it stuck out.... This was 2003...5 years after finishing chemo, and 5 years of growth on my hair. My daughter didn't let me cut it for a long time...I guess it was because she associated me having no or short hair with having cancer.
Something has been bugging me for a while. Cancer survivors tend to refer to cancer as "my cancer." I hate that. It is true, it is our cells, so therefore totally ours...but, I don't want to own it.
It is true, for anyone who has had cancer, it is so much part of our lives....but I don't want it. I don't want to claim it. I want it gone. I do not want to say "my cancer" as if I was referring to "my dog" or "my daughter." That's pretty unrealistic. What we have gone through shapes how we view things and how we react to them. We have seen battle. We have the scars. We must move forward. Peace with this enemy? I don't think so....
Another thing I hate is when people ask you "Are you in remission?" To most folks, that seems like "Are you cured?" Cured? No. Are there any discernible signs of cancer? No, but that doesn't mean I'm free....
My current oncologist has noted something. My tumor markers are usually within the normal range...but every January for some strange reason, they spike out of the normal range. However, they drop again. He commented on that. I've wondered if it has something to do with the amount of sugar I tend to eat in December, or the stress of Christmas. I suppose it doesn't matter. He usually just says "So, how are you feeling?" If I'm feeling fine, then he says not to worry.
I guess I'm getting to the point where it isn't ALWAYS on my mind. For instance, I had my annual mammogram on my remaining breast at the end of January. It was a real trip. I knew I was fighting a virus that my daughter so graciously brought home. However, they thought they saw something on the mammogram, so they sent for an ultrasound right then and there. They picked up something on the ultrasound, but I told them it was lymphatic. That sort of startled them. I told them it hurt, and it was getting more enlarged the more they poked and prodded me, and pointed out that usually BC doesn't hurt, and certainly the lumps didn't get bigger within the 2 hour time frame that they were poking and prodding me.
So I went home. Usually, I'm sent a letter shortly later telling me the results of the mamm. This time, I didn't get one. I occurred to me last night that I hadn't heard the results, so I thought I had better call my GP. Since I had my first mammogram in OH locally which was ordered by my GP, I thought that I had better keep all of my mammograms done at the same place, particularly since I had no mammograms from earlier. (Ohio State University LOST three jackets full of my mammograms, bone scans, and other tests which had been done before digital came in.....they've never found them, nor has anyone apologized for losing these records).
Since my oncologist practices at a different hospital, I have to call the GP to order them, and then make sure that the Oncologist gets copies.....sometimes they goof and they don't get sent to where they are supposed to go.
So, here it is, a full 2 months later and I call to find the results. That is certainly not someone who is too concerned....I called, they said everything was normal, so I'm test free until my next PET scan which is usually in November or Dec. thing is for certain, we must all be our own patient advocates and make sure that we follow up. I have to remind my self that I have to keep track of where I am because no one else is going to do it.


  1. You are so right when you speak of being your own patient advocate. I have all of my pre-digital films in my possession and I don't think I am going to give them "back" to anyone. I know I won't lose them

  2. Yes. I was furious with this. The woman at the intake desk took them (they weighed about 20 pounds) and they were never seen again. I told the tech that they were there fo comparison...she was surprised because they hadn't handed them over.

    A week later, when I called about them, the person at the place where they read the CATs said that she was sending them back to me....twice, once via FEDEX....what a liar.