Thursday, September 11, 2008

Expectations

Hi Everyone,
Ok, I have figured it out. I can write about my boobs now. I have been feeling pretty petty about being so upset about my breasts. In comparison to what could have gone wrong with my cancer, my imperfect breasts are nothing and I know this. My tumor could have not responded to chemo. I could still be on chemo right now. The cancer could have spread to a vital organ in my body, my liver, my lungs, my pancreas, my brain. I know this too. I am so lucky. I sit here not yet a year later and I am cancer free with a head full of hair that I cannot get enough compliments on (seriously, I have friends who tell me never to grow it out!), a beautiful baby sleeping in her crib, a husband out working his ass off to make money for our family while I take a long extended maternity leave, a job that is putting no pressure on me to come back before I am truly ready, a sleeping puppy at my feet, a beautiful sunny day, and nothing in front of me today but playing with Sadie and enjoying my life. Yet still, I sit here and am upset.


Part of this is my personality. I have that never satisfied streak that I think my mom passed on. That tickle in the brain that says there is more you can do, have, get, learn, accomplish and on and on making it almost impossible to appreciate what is right in front of you. But then part of it is this: Expectations. I am not good when I have expectations that are not fulfilled and this is why I am so upset about my breasts.

Here's the deal. When I started this cancer journey, I had the deepest fears about the experience. I thought I would be lying in bed all day, no strength, nauseous and weak, throwing up, in unbearable pain without the energy to hold my newborn baby. I thought getting chemo would render me this chemical infested freak itching to get out of my skin and end it all. It's not that it was easy, no, not at all, but really, when I think back on it, it wasn't that bad. I still functioned. I still got up every three hours at night and fed Sadie her bottle.



Even at the worst of it, even when my feet were in pain from neuropathy and I was weak because I couldn't eat due to sores in my mouth, I still laughed at Greg's jokes. I still enjoyed the silly antics of my dog and was happy to see my friends and family who visited me.





I was still living. I still had a sense of humor.



And this surprised me in that wonderful way when you think the worst, but get something better. This is how I do best.
What I don't do well with is the opposite. When I have an idea of how things are going to be and it then they go the other way. This is when I lose it. This is why I like to know the endings of movies before I see them, especially if a main character dies. I hate the shock of sadness, the disappointment of something not working out. I hate being let down. And my breasts, my breasts are really letting me down. I never would have been this upset if it hadn't been for everything I had heard. When I would go to the breast care center, all the nurses would tell me how Dr. Foster was a miracle worker, how they had seen the most amazing breasts come from his work. That my breasts would be beautiful. So all along, I have been running on this idea that I would end this experience with Playboy boobs. A sort of consolation prize for having cancer. The award for surviving the nightmare that is chemotherapy and being bald and losing every single hair on my body. Beautiful breasts. I would have rather been handed a check for a million dollars or at least enough to remodel my kitchen, but Ok, nice boobs, I'll take it.


Clearly fake, but nice, right?

So to end up with what I have has been hard. Embarrassingly hard to admit how hard it has been.


Not me, not even close to me (my scars aren't that bad) but you get the idea.

I am more upset about these breasts than I was when my nails turned yellow and started falling off because they were dying from the affects of chemo. I am more upset than when I had to shave my head because my scalp was in so much pain. I am more upset than when my chemo nurse, Pauline, had to restart an IV because my veins were so stressed from being stuck so many times. I am more upset than when I had to hobble around the house and wear thick socks because my feet felt like tiny needles were poking through them at every step, the bottoms peeling ribbons of skin. I am more upset than when I hung my head over the sink, drooling saliva from a mouth in so much pain I couldn't chew, and could barely talk. I am more upset than when I contracted a fungus (yes fungus, like athletes foot) on my inner thighs because my immune system was so low. I am more upset than when I was so constipated from chemo that I cried every time I had to go to the bathroom.


Me, pretty upset after getting my head shaved

And see? Doesn't that seem silly? I went through so much and now, now I am angry because why? Because when I lean forward I have these cavernous indentations on my upper chest. Because there are folds under my nipples (well on the left side where my nipple should be, but isn't) from scar tissue under the skin pulling the skin inward, because one breasts, the breast that had the infection, sits higher than the other and is round and and the other, the one that doesn't have the nipple, hangs more natural like a semi circle, yet is hard at the bottom. Because they aren't soft, but firm and when I touch them I can feel the silicone bag, the crinkle of something foreign under my skin. Because when they are touched, I feel nothing. And this is the saddest part of all. It's not that I didn't know this would happen. They took everything out and only left the skin. Everything. That includes all nerve cells. Of course I can't feel anything. But to really experience this is different than just knowing it. There is numbness when before it was the most sensitive and responsive of areas. I ache for feeling and there is nothing there. I had Sadie on me the other morning, lying in bed and my nipple was poking out of my tank top and she grabbed it with her tiny hand as if it was a toy and pulled so hard any normal woman would have screamed out in shock, but me, well me, I didn't even register it. And this isn't saying anything about what it does for your sexuality, which I won't elaborate on because that's private, but you get the idea. Breasts are a major erogenous zone and to have that zone removed, it's like your favorite dish being taken off the menu of the only restaurant in town.

I asked my doctor what woman complain and worry about more during the reconstruction process, the way their new breasts look or feel. He confirmed that we start out caring way more about how they look. Only when we lose the nerves do we realize we will never feel the sensation of our breasts being caressed again which is so sad because it means we all care way to much about what we look like on the outside, than how we feel on the inside which only makes me feel worse because I am suffering from both ends of the spectrum, how I look and feel.

So that's it. That's the deal. That's what's been bottled up for a few weeks now. My oncology nurse Brigid just called to check up on me and I told her what's going on. She said she read in my file that Dr. Foster had put in a note about being super aggressive with the scar tissue and how I am going to get physical therapy. My first appointment is tomorrow with the physical therapist. Brigid started to tell me how wonderful this woman is, how she is a miracle worker and I quickly shushed her and said, 'No. Don't tell me that. Tell me she is a quack and that it's a waste of my time'. In that way, even if she helps just a little, it will mean a lot.

Love,
Rosalie

4 comments:

jennyc said...

Oh Rosalie, thank you. Much love. xoxo

Marsha said...

I know what it's like to feel grateful for every day you are still here and alive and cherish it, while at the same time being ticked at what you had to give up. Go ahead and be angry. It sucks that you had to lose your breasts. It sucks. Doesn't mean you aren't grateful and you recognize that others may have it worse. But you are entitled to your anger. You have earned it.

BTW, if you find out where I can order a set like on the gal in the first picture, let me know. I'd like some of those too.

Unknown said...

The reason this is more upsetting than chemo side effects is probably because you knew those were temporary and that this is permenent. You're handling this all very well and no one is judging you thinking you're petty. I think this is all going to take a few years to process and it's only been 9 months since diagnosis.

Maggie May said...

Rosalie

I stumbled across your blog and am mightily impressed with your direct, raw writing here. I came away feeling that it sucks you have to feel so bad about feeling bad, if that makes sense. Breasts are our penis, if that makes even less sense! Most women walk around never noticing their vagina (am i making you laugh here?) but our breasts are different. It seems totally normal to deeply grieve and be pissed off over your loss.