Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Friday, January 01, 2016

Thinking about it

When I was diagnosed with breast cancer, and contemplating having a single or double mastectomy, I spent hours upon hours scouring the internet for before, during and after pictures. What was I in for? What could I expect for an outcome? What was the rate of failure? What are the complications?

Those pictures were hard to come by unless I wanted to join private forums or groups. I watched videos of women who proudly displayed their scars. Some as a form of awareness, some as a badge of honor, most as a combination of the two.

I need you to know that underneath these clothes I don't look "normal". If you're on my Facebook page I'm sure you remember the fun discussion about ordering nipples online. (I chose not to have reconstructed nipples.) I chose many things along the way, and I don't regret one single choice. Could I still develop breast cancer? Yes, I could. At the moment I'm not taking my aromatase inhibitors because they make me so sick. I hate them. I can't live life on them. But, not taking them puts my risk of recurrence quite high. I just have a really difficult time dealing with the fact I'll be miserable for the next eight years on those drugs. Anyway, a friend of mine saw my pictures privately and was shocked at the process. She had no idea. Even though these surgeries were brutal (some of my wounds made Dean weak in the knees) I walked around as if I was all fine. I had to. I have a family to care for.

So I'm thinking about it. I'm thinking about posting a series of pictures showing the process, starting with my first surgery. I'm still debating. Its  very personal decision to put myself out there like that. Anyway, its just something I'm thinking about doing, just don't be stunned to show up here one day and that's what you find.


Tigger (aka Karyn) said...

Leah, you are right. No matter how "normal" we look on the outside we are never "normal" again. Our bodies have been ravaged by surgery, radiation and chemicals. Even if your are "clear" or "NED" (No Evidence of Disease) that is no guarantee that it won't return.

I stopped my aromatase inhibitors because they were absolutely horrible and I had major progression of the disease while taking them. They are also no guarantee that cancer won't return. I support your decision to stop taking them because they make life miserable and I know so many women who have had progression or recurrence while on them that the value of making yourself so miserable is very questionable.

If I am ever able to I would love to have my other breast removed. Because I am stage 4 everyone says it's a waste of time and resources but emotionally and physically I hate having one boob. My body has been out of balance since my surgery almost 5 years ago.

Today I told my landlord that they couldn't come next week because I was having chemo and he said "But you haven't lost your hair?". He has no idea even though his wife has been through a mastectomy and chemo. Not every chemo makes you lose your hair. Just because I have hair and look ok doesn't mean everything is ok. A male friend didn't even know that I only had one boob. Given it isn't something we talked about but he knew I was getting treatment for cancer and his wife was about to get a mastectomy and I was encouraging him that it wasn't the end the world. We look ok on the outside but we will never, ever be normal again.

Imogen said...

I truly am in awe of what you and your reader Karyn have, and are still going through. Having followed your blog, I was encouraged to have my first mammogram and I now take a lot more notice of my breasts.

THANK YOU for raising awareness. Not in terms of hanging a pink ribbon on your rear view mirror, or buying a teddy-bear with an embroidered pink ribbon on it that sits in a bedroom unseen - but for sharing the real deal. It has not been easy reading, following your journey - but as horrific as the details are to hear, I can only begin to imagine the horror of having to live it.

Your words *and pictures, should you decide to share them) may very well possibly save lives. I am ashamed of how naive and blase I was about breast cancer before you shared your journey with us Leah. Now I am educating my daughter too, who is fourteen years old.

So much respect and love to you.

chicks3 said...

As an ovarian cancer survivor with the BRCA1 mutation I have a very real chance of having breast cancer. I am very curious about what I would look like if I had a mastectomy. I have never seen a picture or a real live person after a mastectomy but I have heard you are concave after. Anyhow if you are brave enough to do it I think it would be a wonderful gift. I think I would not have nipples after reconstruction and then I could throw away all of my bras!