anxiety – Page 9 – beatingcowdens

My husband says I need to be more confident about my body. He tells me that I am beautiful. I am lucky I know, because he really feels that way. He doesn’t understand my uncertainty at all.

I have always struggled with body image. I have always exercised, and eaten fairly well. There have been times of high weight, but my 5 foot 8 inch frame has always held it well. The last few months have been a bit of a roller coaster though.

Anxiety medication worked to keep the heart palpiations and the panic attacks under control, but it couldn’t give me back my appetite. I was down 30 pounds before the mastectomy. Now, 11 weeks later there are days when I forget. I forget the breast cancer that hid from the tests, the mastectomy that was supposed to be prophylactic, and the silicone that now lives under my numb skin. I forget – until I look. Then I see the huge scars, and the slightly uneven implants – not a surgeon’s error, but rather the error of 7 biopsies slowly removing the skin on one side over 14 years time and my refusal to endure tissue expanders and all their extra risks. I see… I feel…

Now I am home recovering from the complete hysterectomy. Another huge cancer risk removed from my list, but as I await the final pathology the reality that all my “girl” parts are gone – sometimes hits home, and it ouches a bit. What will instant menopause be like? I am not even 40, but I am sure I will know soon enough… Will my thyroid go totally nuts -again? Will I gain back every pound I lost? What will happen to my metabolism, my body?

And what about all these screenings still to do? There is already a harmatoma on my spleen, and a huge gallstone. That is before we have checked the skin, the kidneys, the colon.

I have to focus. I am not Cowden’s Syndrome. I am only a patient who suffers from it. I am still me. Neurotic, loving, caring – me. I will not let this disease define me, or my family. If I do that, it wins.

So maybe today I will look in the mirror. I will try to see the me that my husband sees. I will continue to recover, again. I will think about tomorrow when the sun will shine. I will emerge from this – better, stronger, more confident, and more beautiful. If I let it happen. I am not defined by the sum of my parts or by any disease. I am defined by my soul….

I am seriously starting to think that should be a website. One that reminds you when you have a rare disease its just dumb and dangerous to blindly internet search anything.

So yesterday was my hysterectomy. Ten and a half weeks after my double mastectomy. Two four hour surgeries. My body has had it.

I had talked to my surgeon about going home yesterday. She said it would be fine if I tolerated the surgery well. I was set to go home.

Instead I have a bruise on my arm from the epinepherine shot. Not even sure if I spelled that right, but you get the point. And, the reminder ringing in my ears that “If you try to move – we are going to need a crash cart.”

I have always had low blood pressure. It is not unusual for me to run 85 over 60. No doctor has ever been alarmed. I am used to the quizzical stares, and I take a minute beefore moving when I stand.

But yesterday, after four hours under anesthesia, and after not eating for about 18 hours, my body was a bit testy. Maybe it was trying to tell me I should slow down on the organ removal. But recovery wasn’t going well. I didn’t feel right. I had a terrible headache, and all of these bells kept sounding.

I wanted to use the bathroom. I needed to go. I tried to get up and the nurse said,” not yet.” We went through this a few times. She brought me a bedpan. I laughed to myself. There was no way I could make that happen. I thought of my daughter and the times we tried to make her use one. We are a lot alike she and I.

So it was getting ridiculous. I sat up. That was when they all freaked out. Apparently 74 over 33 is dangerously low. Up went the feet, down went the head, and over was any chance of getting home. Somehwere in the middle of all this they inserted a catheter right there in recovery. Even that brought no relief. My poor bladder wanted to pee.

My anxiety was through the roof. The tears were flowing. I was just beside myself. Hours later – after 8PM from an 11 AM surgery, they brought me to a room – where I lay awake all night. No food… and no mobility. Catheter and IV – UGH!

At 5 Am when they unhooked BOTH the catheter and the IV I sat up. I peed. I walked. All was right with the world.

Then I got home. I started wondering about low blood pressure. What causes those kinds of drops? Kidney issues – (what is the incidence of renal cell carcinoma in Cowden’s patients – almost 30% I think) or endocrine problems – thyroid (HUGE cancer risk – part of mine still sits in my neck like its own ticking time bomb) or heart problems (what the hell, that’s not even on the Cowden’s list!) No more problems. No more doctors. Really… I think I either need stronger medication for the anxiety, or a slower search engine.

On the upside – my uterus, having served its one useful purpose – sits in a pile of medical waste alongside my ovaries somewhere. Huge risks – gone. Its a tough battle, but I am on the winning end right now.

I wonder how many organs you can have removed before you thoroughly traumatize the body? Maybe I should look that up… tomorrow.