I've been mentally writing this post for days. Wondering how or if "you" will judge me for what I write here. I promised you, and more importantly, myself, early on, that this blog would be an honest account of what this breast cancer, and now post-cancer life is like. So I'm going for total transparency here.
In some ways, I am doing really well. Recovery from the exchange surgery wasn't too bad. Mostly it was inconvenient and uncomfortable to wear all of the compression garments. I hadn't known that was coming and I don't care much for surprises. My results aren't what I was hoping for. The new "breasts" if you can call them that, are uneven, one is definitely larger than the other and still tends to slide toward my armpit. The incision on my radiated side became hard suddenly, but otherwise seems to be healing well. I have more scars, but the old ones are starting to fade a bit, and I should be cleared for tattooing in a few months. Please don't read this as a failure of my surgeon. He did a great job surgically. Much of my disappointment stems from one of two issues; I don't feel like I was well prepared for what the outcome was likely to look like and some part of me was secretly hoping the new "breasts" would be more like the old ones. I seem to be mourning them now, post reconstruction, more than I did after the mastectomy. I didn't know that animation deformity was a normal outcome of this kind of reconstruction. The implants are placed under the pectoral muscle. When the muscle engages, it pushes down on the implants and pushes them in a down and out motion. This is really noticeable in female bodybuilders that have implants. When they pose onstage during competition, animation deformity is what makes their implants push down flat and out into their armpits. I wasn't prepared for how different it would feel to do something simple, like open a medicine bottle or close a car door. I really wish someone had told me or I would have known this is what it was going to be like before I made the decision to go with implant reconstruction. I'm sure I'll just get used to it, like everything else.
This week was a tough one. I've been out and about a lot more lately and lots of people have noticed that I don't have the long hair I wrote about in my last post. Let me catch you up... I got the weave on Sunday morning. By Wednesday, my head still hurt and my hair line was welting and bleeding in some spots. Obviously, though the cornrows were beautifully and expertly executed, they were too tight for my wussy scalp and the hair HAD to come out, and I mean right then! It was late on Wednesday night when I asked Doug to help me get the hair out. We had no idea it would take as long to get it out as it did to put it in. More than 3 1/2 hours later, I had a fro a la Thing 1 or Thing 2 from Dr. Seuss, and I finally had some relief. Add a bit of guilt for the wasted time, money, and energy, but at least my head didn't hurt anymore. Anyway, the hair is gone and people are noticing. While I know full well they are not noticing in a bad way, or even thinking anything about my appearance, I am. I don't think I've ever felt this self conscious. I don't say that to solicit a bunch of compliments. So many of you have told me you like my hair short, or that I look beautiful, and I realize I should be (and AM) very grateful to be alive, regardless of what I look like, but this physical part is SO FREAKING HARD. I wasn't prepared for how my appearance would make me feel weak. I worked hard to develop as a person regardless of beauty. I felt beautiful because I was smart and vibrant and a good person. Now, I just feel ugly and out of control and scared A LOT. I wonder if other cancer survivors feel this way too, or is it just a weakness in me?
I've been reading and researching a lot during this journey. I feel like I ought to just go to medical school at this point because I'm so well versed in this ugly thing called Breast Cancer, and even still, compared to what there is left to know, I know nothing. It's overwhelming really, the amount of information available without really offering any cut and dry answers. It's frustrating. Anyway, getting back to that tough week I was telling you about... I'm very sensitive to the challenges my friends and family face. This week, a friend got difficult news about her daughter, another gave birth nearly a month early, my daughter has been sick with the flu and then WHAM! 3 local YOUNG women from the breast cancer community died. 3. Young. Women. In. One. Week. I didn't know 2 of them, and only knew one from a couple of encounters for the Pink Fashion Walk last year, but their stories and their spirits are unforgettable. You didn't have to know them to feel their loss. I never did well with death. Some people can shake the sadness, move on easily. Some can stay focused on the relief that going home to our Lord brings. I always just felt really stuck and strange and sad. And now, knowing how much their stories are like mine, I struggle with their loss. I want to pound my fists and yell out "It's Not Fair!!" like a child. I know our stories are our own. I'm not them and they're not me. I'm blessed to be here, surrounded by love and able to live. The loss of three young women, all moms to young children, is devastating, but in a way it makes me want to burn a little brighter to honor them.
A good friend of mine called me Saturday morning. She had just heard that our mutual friend (one of the women I mentioned above) was in hospice and likely to pass soon. I hadn't known we both knew her, and she hadn't known that her friend was dying (it wasn't public knowledge). The news took us both by surprise. I had known she was back in treatment, but not that the prognosis was so grim. My sweet friend called me, not because we both knew the woman, but because the news lit a fire in her and she was going to light a fire in me. Little did she know, the embers were already in place.
My sweet friend told me she was ready to change her lifestyle. To get rid of all the junk food she'd been feeding herself and her family, and she wanted me to join her because (I'm guessing) she wasn't going to lose another friend to this awful disease. I went for the most aggressive course of treatment offered by the oncologists on my team because I wasn't about to let cancer kill me. But I have been failing miserably when it comes to diet. We all know that junk foods and sugar feed cancer. If there is even one cell of that crap left in me, I'm going to starve it. I've done the research (as I mentioned before) and I know what needs to be done. So why am I still shoveling Girl Scout cookies in my face every chance I get? Why am I doing this to myself?!
It's pretty clear how strong the connection is between emotions and food. Unless you've recently rolled off the back of the turnip truck (southern for dumb), you know that we all eat for any number of reasons other than actual hunger. I've been using food to mask fear and weakness. It has to stop. I am 4 sizes larger than I was when I was diagnosed, and I keep getting bigger and bigger because I haven't made the changes I know I need to make. So this is it. Utter accountability.
If you see me out and about and I'm feeding myself something that isn't good for my body, call me out on it. Please! You'll be helping save my life. If you have good, healthy recipes, or ideas that will help me make this transition, share them with me. Please! I'm done with cancer, for now and for good. It's time to face the fears and the weakness. It's time to stop making excuses.
Now, I've got to run and catch up with that turnip truck. Turnips are WAY healthier than cookies....
P.S. I love you sweet friend! Thank you for loving me.
Thank you all for loving me!
Kara, I so identify with the issues you're having that I thought I should comment on this one. After treatment, I started a research project to consider the radically gendered parts of this particular disease experience. I knew the literal sickness would be hard but I wasn't prepared, either for the way the appearance issues would bother me and become intertwined with the disease. The appearance changes are almost all markers of female gender in our culture and regardless of how nice people are to you, women in our culture are trained from early on to be self-conscious when we are outside the norm in these ways. So, yeah, it's psychologically really hard and challenging. So, I mentioned that I started a research project, and I started studying the breast cancer survivor networks to see how survivors talk to each other and support each other through what I perceived to be the gender dimension of breast cancer. In fact, truth be told, I keep reading your posts and thinking about these issues and have at times considered asking you if I could draw on your blog for the project, too. But that's a separate thing. I just wanted you to know today that these questions and concerns definitely were my experience, too. Even feeling like I "had" to get a wig and then feeling guilty for spending the money when I didn't use it much. We shouldn't have to deal with those other kinds of pressures when we're recovering but life is complicated that way.
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