Taxotears Turns Ten

Later this year will be a bittersweet celebration for myself and many ladies from around the world. Bitter because it marks the anniversary of the birth of a highly successful support group that I have been involved with from the first day.

Ten years ago I found myself in a situation that not only shook me to my core, but also left me with the need to track down others that had been disfigured like myself. What was this disfiguration? The year before I had been given a chemotherapy drug, Taxotere, as part of my treatment for breast cancer. Instead of my hair growing back, as I was told it would, I remained looking like an orangutan—an ugly freak. My doctor told me that the drug company, Sanofi-Aventis, had informed him I was only the third or fourth person in the world that this has happened to! So there must be two or three others out there somewhere, and I vowed to track them down. I hadn’t banked on it being so easy.

The first lady I found was Pam, from Oklahoma, and we decided to find others and create a support group. Cynthia then joined us and she created a website for our group of monk look-a-likes. Little did we know in those early days, how successful the group would become in finding so many ladies. We are now a large, thriving global group, with a constant stream of new members. It’s a group none of use wanted to join and it comes with a lifetime membership.

Now on to the sweet bit.

This group is a safe place for all members, there’s nobody to judge us and accuse us of not being grateful for being alive, which happens to us constantly. These people hear us but do NOT listen to us. They don’t want to understand our message. So we know that when we lend a shoulder to cry on, sometimes just listen, tell our stories and share tips that nobody ‘gets it’ more than we do. What would we have done without this support group? I have no idea, but I do know it’s been an incredible help to us all. We might not be happy to be in this situation but we are sure as hell happy to have each other.

This week I was invited to be interviewed for a radio podcast show for “inspirational authors’ so I asked our members what the group meant to them. I would like to share some of their comments with you.

“This group has given me strength and courage.” — Pam

“This group means I’m not alone.” — Chrissy

“Ladies understand how I feel when no one else does.” — Susan

“I’m not a freak.” — Erica

“This group has taken me from a place of isolation and despair to a place of understanding, validation and most of all hope.” — Suzanne

These are just a few of the comments I received.

I will end this blog on that sweet note, not only sweet because of how we feel about our support group but because it’s a good excuse to have another slice of cake!
Happy birthday to the amazing ‘Taxotears’ group!

Kathy: So Much Loss

When I was 39, I was diagnosed with a Grade III infiltrating duct carcinoma. It was a couple of weeks after my daughter had spinal surgery, and I was so in shock, I just did everything that was recommended to me. I assumed that the doctors knew everything, and would do only what was absolutely necessary to save my life so that I could care for my family.

I had a lumpectomy, and a second surgery was performed because the edges were not clear. Some of my lymph nodes were also removed. I had CEF chemotherapy (Cyclophosphamide, Epirubicin Fluorouracil) for six months, and it was not long before just looking at a Cyclophosphamide pill made me gag, and I could hardly force myself to put the pill into my mouth and swallow it.

I had a port implanted under my skin near my collarbone, and I hated it. I hated seeing it there, along with my bald head. I had sixteen radiation treatments after that, and by the time I went away for my anniversary three months later, my head was covered with a dark bristly brush cut, which I also hated because I have always worn my hair long.

It felt so delicious when spring came, and I could remove my winter cap and the wind blew through my hair because it had grown some.

It felt WONDERFUL!

Five years later…

I was feeling rather confident that that was the end of the cancer, when a lump returned in the same breast.

This time the surgeon said that a mastectomy was the only option. So, I had that done, and then four treatments with Taxotere. I was thinking that it would be a breeze because the treatments were going to be finished in only two months, and by the end of six months I was going to have a full head of hair again. I last saw my hair in all its glory in 2006, and I have regretted hearing of Taxotere ever since.

With my very first treatment, I had severe pain in my hip, and my hands turned red. Soon I had a pimply rash on my head, and my nails all started to peel off my fingers halfway down. My nails have grown back, but they don’t feel right. What little hair I do have is so sparse and wispy that I have to wear a hat at all times.

My left eye tears often, I assume from the tear duct scarring, and my eyes are very dry. It is funny that I can have a puddle in the corner of my eye from time to time, but it is generally very dry. Ironic…because I have never stopped shedding Taxotears.