Saturday, November 11, 2006

On Breast Cancer and Life

When Jill Caroll was finally released from captivity after being kidnapped in Iraq and held hostage for so many months, started serializing her story of her experiences. It was obvious that she was in the process of writing a book about the ordeal, and it is my fervent hope for her that she sells enough copies that she need never worry about anything ever again. I was asking my sister if she had been reading the installments each day and told her that in my opinion, if you can't take a horrible experience and turn it around to make something good out of it, then it is time to hang up your Big Girl shoes.

I don't yet know if this is the beginning of my series telling of my process through breast cancer, or if it is the long short story of one of the greatest scares of my life. I don't yet know the outcome. A week ago I couldn't write anything without it being about this and how freaked out I was. Now I am able to sit down here and talk about it without my post being one long terrified, tear-filled shreik of No, No, No, No NO!

A year ago I went to my gynecologist because I was concerned about two small open areas on my right nipple that were draining and would not heal. Don't worry, she said, It's not breast cancer. But go see this surgeon just in case. I finally got in to see the surgeon in early January. Don't worry, he said. It's not breast cancer. In fact, I don't see any reason we need to do surgery. Go have a sonogram done of the area just in case. Don't worry, the radiologist said after admitting that he had never seen anything like this 2 cm mass in the nipple tissues before. It's not breast cancer. Phew, I thought. Until my mother pointed out that A) I'm not getting any younger, and B) This obviously wasn't going to go away on its own. So back to the surgeon I went, and in early March he did surgery to remove a benign tumor from the nipple with two incisions, one on the underside of the nipple, and one on the upper side.

But the upper incision never healed, and I spent several months going back to the office every two weeks only to be told by the PA, It looks great! Come back in two weeks. Two weeks later: It looks great! Come back in two weeks. Finally in July I said, no, it doesn't look great, it isn't healing, it's not going to heal, and we need to do more about this. So in mid-August I went back into surgery while they 'freshened up the edges' (I love the euphemism) and restitched and glued the daylights out of the incision site, then wrapped me tightly in about 2 miles of elastic bandage. I told my sister that I was really glad he hadn't a nail gun in there at the time, because I fear he would have used it.

So five weeks go by as we wait for the glue to come unglued and see what the self-disolving stitches have wrought. And one day as I was in the shower my incision popped open again, and I was right back to square one. Back to the surgeon's office I go. Say it with me - It looks great! Come back in a week. Having by now got the gist of what was to come, I went instead to my primary doctor, a woman who freaked out when she saw my nipple. It doesn't look great. You need to see a breast specialist. And after 9 months of seeing gynecologist and surgeon alike, this was the first I'd heard of Paget's disease, a rare form of breast cancer that only occurs in the nipple.

And on the 1st of this month I went to see the breast surgeon. Who was very concerned that the open areas had never been biopsied, and could not understand why I wasn't healing. He told me we had to do a biopsy on the one remaining open area, and we had to do it soon. We have to rule out Paget's disease before we can think about anything else. Of the list of things that might cause my symptoms, Paget's, he said, is numbers 1 through 10. We can't think about number 11 until after the biopsy. He kept asking me, In this year, no one has said anything about this? No one has been concerned about this? I held up all through the drive home. I stopped to pick up something for lunch. I held it together. And when I called my Mom who was waiting to hear what the surgeon said, I broke down and sobbed like a baby. How do you tell the people you love about something like this?

After 6 days of roller-coaster emotional trips, this past Tuesday I went in for another biopsy. I'm told so far that he did find another benign tumor while he was in there and that poor circulation looked to be the reason the incision site had never healed, but we have to wait for the biopsy results before we know anything for certain. His office promises to call as soon as they know. So I wait. My husband waits. My parents wait, my sisters wait. My friends wait.

Being the squeamish one in a family with a history of 160 years of nurses, I finally take a look at my breast in the mirror. My nipple is gone. Where it was is now bordered by black stitches. I wrote in email to my family that I will entitle my autobiography 'No More Wet T-Shirt Contests For Me!' or 'Boy, Am I Ever Going To Look Funny In Cold Weather'. I'm trying to see the funny side to it all. I'm trying to deserve my Big Girl shoes.

Although I am calmer than I was a week ago, my emotions run through a whole gamut of thoughts and fears and plans and 'not making any plans'. At one moment I am sure that I do have breast cancer. It explains all the symptoms, and it sure seemed as though the breast surgeon was pretty concerned that this is what has been going on. The next moment I am convinced that it isn't breast cancer. That maybe I am just being an alarmist and this is simply another benign tumor and nothing else. I'm convinced that when a negative result comes back from the biopsy that everyone will think that I have been playing this whole thing up for drama and attention. Then I am back to realizing: This does happen to women. Every day. This could be happening right now to me, too. Statistics show that a woman is diagnosed with breast cancer every two minutes. Every two minutes. That one in 7 or 8 women will have breast cancer in their lifetime. I know more than 8 women without breast cancer. Am I the statistic? Am I the one that lets them off the hook?

I don't remember now what the trigger to this thought would have been, but ever since childhood I have been convinced that at age 50 I would have breast cancer. But that I would survive. And I knew this at a time when women didn't survive breast cancer very often. So I know that if my result should be positive, I will survive. I will survive. I just don't look forward to the process of getting from Point A to Point B. It could get pretty ugly. Or I could be like my friend who on hearing about my upcoming biopsy, told me that she had a lumpectomy and was on tamoxifen for 5 years. No chemo, no radiation, no mastectomy. I know lots of women who have survived breast cancer. I will survive.

It is necesary to remind myself that this isn't happening only to me. It is happening to my husband, too. To my family and friends. I have always been a very private person, and I have had to talk this over with all of them, one by one. I've had the have 'the' talk with my husband, who doesn't like to talk about emotional things. Don't worry, I told him. No matter how bad it might get. I will survive.

Until the results come back, then, we lead a somewhat normal life. I do the laundry. I clean the house, make the bed. Work on my knitting projects and Christmas gifts. Think about what to cook for dinner. Listen to the incredible beauty of Yo Yo Ma playing the Bach concertos. We go to the library. And we wait.

And I have made it a point to make sure to appreciate all the little details in life that we all over-look every day. The birds eating the scattered seed in the front yard. The feel of carpet on bare feet. The way the sun comes through the windows. The feel and colors of wool. The smell of food cooking.

A year from now I will have either gone through this process or not. I may by then have earned my pink t-shirt. Lost weight. Lost my hair and have it grow back in dark and curly. Lost more of my body to surgery. Earned the right to wear my Big Girl shoes. Or I will hear in a day or two that this is all much simpler than our worst fears, and that I have dodged the scalpel once more. But I hope that in a year's time I still appreciate the details of life the way I do right now, at this moment. That would be a wonderful gift to take away from this experience.


Blogger Vivian said...

Lynda, I pray for you. And you WILL survive.

4:48 PM  
Anonymous Anonymous said...

Thank you.

11:20 AM  
Blogger Sandra Bennett said...

Sister Lynda, you have, beyond the shadow of a doubt, earned your Big Girl Shoes!

BTW, don't worry so much about putting on clean undies in case of an (knitting) accident. If you're in such an accident, you'll probaly soil said panties anyway.

Thanks for the joy and laughter in the midst of pain.

You're tucked into prayer and many thanks for allowing Fiber Femmes to include the 12 Steps of Yarnaholics...very funny!

6:27 PM  
Blogger AlisonH said...

Lynda. I did the Paget's disease scare once--I had a doctor who immediately told me about it after a positive mammogram that matched symptoms I had going on. But mine turned out benign, and I'm praying yours will too.

12:47 PM  
Blogger Rissa said...

I know you don't know me from Adam's housecat...but I am praying for you too. I have had a couple of infected hair follicles on my left breast and Padget's was the first thing that came to mind whenever I looked in the mirror. It scared the hell out of me (and my husband). I can not imagine what you are going through right now...but I am certainly thinking of you.

7:43 PM  

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