Monday, February 16, 2009

Silicone is My Friend

Pink beach morning glories seem like a good way to start. Something cheery for something I despise. When I first had my mastectomy, a friend who had it done before me said "Remember, silicone is your friend."
When given the option of having reconstructive surgery, I decided not to go that route. I didn't want to have more surgeries. I didn't want to use the muscles which were designed to do one thing be used for making a fake breast. It just didn't seem worth it. I didn't want to use either silicone or saline, I use a prosthesis.
I hate going in to get new ones. A couple of weeks ago, the seam on my form gave way. My husband fixed it with some of his super-duper chemicals from work (he's in the aerospace industry). While it cured, I dropped back to using my old one which had been repaired from an incident with the cat....lots of little pin-pricks are the result of her being overly rambunctious.
Last week, I accidently dropped it...and it split in two oozing silicone out. The other one with it's seam repaired I was sure wasn't going to last very long, so since the prosthesis place was having a "customer appreciation" day in honor of Valentines day, I went in to get a new one.
After 11 years of this, you'd think I'd be used to it. I hate it. It's getting better, because not all the bras are industrial strength ones....they're getting prettier, but still. . . Insult was added to injury when my FSA card didn't work. When I finally got done with the transaction, I called the insurance company which administers the flex spending account, and discovered that for some reason the shop, which only sells items for women who are undergoing chemo-therapy and who have had mastectomies and lumpectomies, is catagorized as "clothing for men and women, " instead of durable medical goods. experience is better than one of my friends who had a double mastectomy last year. Her insult was that her insurance allowed her one prosthesis per year. One. Even though she had had a double mastectomy, she could only get one form. Obviously, someone wasn't thinking when they wrote up this provision.
Even with insurance, buying forms and mastectomy bras is expensive. Just for fun, I looked on ebay. Sure enough, you can get them there. Some are used. Some are new. And...I never realized that I shared my need with men who are cross dressers and drag some are....very colorful and anatomically correct.
As much as I don't like doing this....I have to repeat....thank God for silicone, and silicone is my friend.

Saturday, February 14, 2009

The Little Taxols all in a Row

I remember when I was diagnosed with breast cancer the first time, how people said, "I know someone who has been living with breast cancer for 5 years now!" I remember thinking "5 years! I want 45 years." I was 34. I had a 15 month old baby. 5 years just didn't seem long enough.
When I was diagnosed with stage 4 breast cancer just 4 1/2 years later....I didn't know what the road would be. I didn't know anyone who had lived for a long time after being given a 1 in 10 chance of survival over 5 years. While I knew women who had survived for 34 years after having a mastectomy, I simply didn't know anyone with stage 4 cancer.
Then I met more. Mostly young women. Some older women. Some, who like me, had recurrences after a number of years. Some sooner than others. I remember sitting in the treatment room with two other women getting infusions of Taxol. The oncology nurse used to giggle and call us "the three little Taxols, all in a row. " Now, there's just the one little Taxol survivor.
Being young, I thought I had a better change of surviving than most. Being strong, and ornery I knew I had a pretty good chance. I did lots of things to try to make sure that I lived. I had 9 twenty-four hour infusions of Taxol over a 9 month period. I had a mastectomy. I had high dose radiation to my pelvis. I thanked my lucky stars that the cancer came back as multiple (try in the thousands) loci tumors in my originally effected breast and as a bone metastasis in my pelvis. I thought that was a heck of a lot better than getting it in the other spots that it often hits, and I feared it in my brain....
Still...the decisions I made then had ramifications that I couldn't even begin to think of. Since the cancer was progesterone positive, I had my ovaries removed, as well as everything else because what was the point of keeping a uterus or a cervix if you could no longer have children? As a person who comes from a family with heart issues, being menopausal at age 38 was scary. I didn't know, however, about any of the other things which would prove to be difficult. There are many things which ARE difficult....painful...scary.
I thought I would share my observations, letting others know that there are others here. Explaining how I feel, so that others may understand. Raging at the beast...rejoicing in survivorship. Fearing. Hoping. Understanding. But, most of all, living.
Living with breast cancer is different...Only the ones who are directly hit with it...and by that I mean their friends and families as well, can even remotely understand.
For instance....lately, I have been having severe pain in my pelvis. Really bad. Making me limp around bad. Is it cancer? I don't know. I had a P.E.T. scan in late November which didn't show anything. Is it age? Is it muscle damage from the radiation? (The muscles there were heavily "toasted" and because of that, I have lack of range of motion in that area despite therapy...I just gave up on it). Is it arthritis? Does arthritis hit your pelvis other than at joints???? I don't know. No one else knows either. Knowing when to alert the oncologist....quandaries.
For anyone who has had cancer, you have a constant companion. Cancer is with you. While it fades into the is always there and it comes back and reminds you of it's presence.
Is life bleak and worse? No. It's just different. Sometimes I get angry at having to live with it. Then I remind myself, I AM living with it. I'm the last little Taxol from the row.