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Monday, June 28, 2010

hurry up and wait

My surgeon may be one of the most gentle people on the planet, despite that he cuts and rips open body parts for a living, you would think he taught kindergarten. He is into mind/body connection and seems genuinely interested in how I am processing my diagnosis.

At the very least I am going to have a mastectomy. My right breast has tons of calcifications and two lumps which makes the cancer multifocal. I have stage 3 breast cancer and will have the lymph nodes in my arm pit removed (approximately 7-24 of them). I will be having some more tests to determine a few other aspects of my care. I am scheduled for an MRI--there was a spot in my left (the to-date healthy breast) that they would like to look at, and it will also give them a better look at my lymph nodes in my right arm pit. Also I will meet for genetic testing, because I am so young and have no family history of breast cancer. If this test comes back positive then I will have a bi-lateral mastectomy. I have my appointment on Friday to meet with my oncologist to discuss treatment. I will be 100% having chemo, so I get to know a bit more about that on Friday.

It is a hurry up and wait situation, so that is what I am doing.

From this meeting it seems like I and care staff are leaning towards a double mastectomy. Losing both breasts doesn't bother me as much as you might expect. But what makes me cry and gulp for fresh air is that I won't be able to breastfeed...this breaks me a part. If I am lucky enough to have my eggs saved (discussing that option on Friday too, removal of eggs so they aren't effected by chemo) and am able to get pregnant I won't be able to provide my baby with the amazing qualities and bonding time of breast milk. I know I could use the tubes and have them at my nipples (after breast reconstruction & nipple reconstruction) but I am pretty sure that fake nipples don't produce oxytocin......it just kills me.

I wish that I wasn't the type of person that planned for the future. I almost wish I was the type of person who thought losing her boobs was the end of her--that they were what made her a woman. I would get new ones, feel better, done and done. But I am not that woman. My breasts are great, but they are a far cry from who I am.

If I was that person I wouldn't be concerned about having a baby, breastfeeding or how I would explain to my children that they have a higher risk for this silent disease. I wouldn't be terrified of not being able to have money to pay bills because I have to have surgery, to have to learn to function without lymph nodes. I think that being mature and so concerned about stuff leaves me vulnerable......weird but true. One day at a time doesn't work when you are planning for a future.

Today my brain is tired, and my body is exhausted. I have a headache that is working its way to the core of my brain and the innards of my body. I also have about 30 phone calls and emails to respond to and I don't have the energy to tell my tale of woe..... When I tell others it makes me sad, it is a burden I feel I have handed them... catch 22 I guess.

I am not sure if I should continue to work through this time up before surgery (financially it is a necessity really) but mentally and physically I don't know. Today the doctor told me this was the time to do stuff for me, and I am lost because I don't know what that is right now. I really feel like curling up in bed---I feel safe there. It supports my body and feels like home, I know each pillow and my blankets keep me at just the right temperature...it is turning into my sanctuary. I know this will change when I am forced to stay in bed because I am too ill to get out. But now I am making the choice. I choose to lay down and just rest, I choose to curl up and shut myself down and off from the world. I didn't chose to have a lump, I didn't chose to have cancer, but I am damn well choosing to stay in bed if I want, even on a sunny day if it makes me feel safe.

Disclaimer: I am a therapist and aware that secluding yourself in a bed isn't always the best thing to do. And no, I am not isolating so get your head out of the gutter. I am using what self-soothing mechanisms I can dredge up from my exhausted body/mind and using them to the best of my ability.

My mind is cloudy and my ability to put my thoughts in order is lacking. I am sleepy, but can't sleep. I am anxious and can't relax. I am angry, but can't yell. I am hurt, but lack the ability to heal. I have breast cancer, but I am not my breast cancer.

2 comments:

  1. It is a gift to be able to express your feelings like that! Keep sharing for you and for us. Love you kiddo!

    Dad

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  2. Dori, this touched me to the core. I'm not the woman that could just get them reconstructed and move on with my life either. All the same things you talked about...babies, breastfeeding...those things would be haunting me, too. And don't ever feel like you have to defend yourself or the way you are coping. As a therapist you also know there are millions of ways that people cope, and none of them are "right" or "wrong". Do what you need to do during this time, and if your snuggly bed is the right place for you, by all means find some comfort there. You are constantly in my thoughts these days. Know that you have so many people fighting along side with you, ones you know and ones that you don't.

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