Wednesday, December 9, 2009

learning how to learn

When I first found out I had cancer I didn't know a whole lot about it. Yes, my mom and dad both had cancer. You'd think I would know more than the average chick. In fact, when my mom was dying, my partner at that time was an immunologist. I used to stop by the lab with her as she played with her mice and rats and petri dishes and proofread her painfully boring papers about antigens and what not. But like most things that I find sad or hard, I didn't do any research about my parents' cancers. I find it easier to ignore certain things as if that will make them go away or they won't affect me because I don't know about them. Like a little kid pulling the blankets over her head thinking the boogie man can't get her because she can't see it. For years I did not watch the news because I found it too sad and depressing. Of course my ignorance didn't improve the world because I did nothing to try and make a difference.

When the radiologist called me and told me I had dcis I needed to write it down. I never heard of it before. I'm not really sure what he said after that but he said he would call my primary doc for me and explain everything and then she could give me a referral to a surgeon. I don't think I asked any questions during that phone call. I didn't know what to ask. I didn't know anything about breast cancer. I remember once wondering what stage my father's bc was but also not understanding what the stages meant anyway. Is a 3 good or bad? Just like when they take your blood pressure or check your cholesterol. What's a good number? I didn't know what any of that stuff meant. So when I got off the phone I immediately had to google dcis. I wasn't even thinking about losing my boob at that time, I just wanted to make sure I wasn't about to die. And from what I read it didn't sound so serious. In fact, when dw and I were sitting in the exam room waiting to meet my general surgeon, we were laughing and joking around when she walked through the door. And when she started talking about brca I was a little more somber but still didn't understand the situation. I told her I figured I would get cancer some day since both my parents had it. It wasn't a big shocker. And from what she told me about my biopsy, my dcis was not going to be that bad and I might not even need radiation depending on the final pathology. So when she mentioned that I could wait for my brca test results before deciding on a lumpectomy or a bilateral mastectomy I thought she was nuts. Why would I cut both my boobs off when I could just take a little piece out and probably be cured? We went home with my lumpectomy scheduled for the following week and I was comfortable with my decision. I googled brca a little but didn't find much info out there. Had my surgery and another surgery and got my brca+ results back. My pathology was good (stage 0) but not the greatest (comedo) so a little bit more aggressive dcis but still nothing life threatening. Still felt very comfortable with my decision of a lumpectomy and was ready to embark on radiation therapy then be done with it all.

I took two weeks off from cancer then started some serious research. Went to the bookstore to look at cancer books and see what I could find out about this brca stuff. Stumbled upon the FORCE website and finally found some resources that would help me in my understanding of all this. There I found research articles, recommended books and testimonials from other brca+ chicks. I found my way to the cancer library at the local cancer institution and checked out a bunch of books. Some were general bc books that had a little info about brca in them and some were books written by brca+ women who described their journey with facing and making the surveillance vs surgery decision. I was on the web almost 24/7 for the next couple of months. I had a hard time sleeping so when I say 24/7 I mean it! I wasn't too happy about what I was learning because everything led to surgery. Based on my age (young in the 'normal' world for cancer yet old for the surveillance route), my brush with cancer already, my family history (on the higher side of the 'high risk' brca+) and from what the doctors were saying - surgery was the way to go. I have read about families where every single sister ended up with bc and some with fatal bc. Yes, people still die from breast cancer. I read about people that in retrospect wished they had preventative surgery. I know someone whose sister is brca+ and 10 years after her lumpectomy got it again in the same breast. So I let all this information fester and I put away the cancer books and articles. I was so sick of reading about it and really tired of having all things point to surgery. Why doesn't anyone write about surveillance and being in that 15% of people that turn out okey-dokey?

After about two months, I started reading about cancer again. I needed to know about my colon polyps and why I had them. My gc doesn't think they are related to my brca. That is usually associated with brca1, not brca2. And according to everything I read, my uncle's colon cancer shouldn't have been a big concern of mine since he is what they call a second-degree relative. So the medical guidelines all say that I didn't need a colonoscopy until I was 50. Lucky for me my pcp and gi felt differently. But I am still in the dark as to why I got mine. Makes me a little uneasy but at the same time colon cancer is preventable as long as I keep going back for more colonoscopys. I've started reading more books written by cancer survivors and their ordeals. Not just bc but all types of cancer. I am now in the place where I think things aren't so bad after all and appreciate all the stuff I don't have to go through like aggressive, invasive life threatening cancer and chemo and awful drugs with awful side effects. I don't feel as sorry for myself anymore and although I still have the slice and gut ahead of me, my life feels like it is getting back to normal. Just today, I was trying to remember the name of my gs! That feels real good:) Knowledge is power.

2 comments:

  1. While you've been through more than I have, I felt so much of those same things. When I first learned I was BRCA1+ I didn't know anything about it either. It's so overwhelming in the beginning. As far as BRCA resources go, there aren't many out there yet. I wish you had known more about it before you'd made your choice to have the lumpectomy, you'd be done with the PBM aspect of it now. I personally can't wait to be part of the 'all done club'- to not have to worry constantly about cancer. I miss the days of not thinking about cancer. I hope that some day, I'll have a day like that again..

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  2. Actually I'm glad I didn't rush into the pbm. I would have had the tram since I didn't know about diep and I really appreciate this extra time with my girls. I sure wasn't ready to get rid of them even two months ago. You are almost done and I'm sure you will feel better, most of the time:)

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