I hate cancer.
So as I go through treatment for breast cancer I make art. I am currently working on several drawings and will be doing my first performance piece. I will update this page as things happen... I intend to show the body of work after I finish treatment. It is important to me to make work about my experience as I go through it and not just when I am well and reflect on my experience. I am working on the perspective I have on things now - there will be many years for me to look back and create art using a different perspective. Currently there are many things in the works as far as my art.... As I am struggling with the chemo treatments I am putting most of my other work on hold. I really do hate cancer.
A performance piece
September 28th 2009
Nollen Plaza, Des Moines, IA
I want to thank you for voting in favor of the Women’s Health and Cancer Rights Act of 1998.
My name is Mary and I am currently going through treatment for breast cancer. I am 35 years old and am one of only about 5% of the population who are diagnosed with breast cancer under the age of 40. In the world of breast cancer I am just a toddler I would say baby, but there are many much younger than me in their 20’s and teens. Being a younger woman with breast cancer creates a particular set of challenges that I would not be facing had my diagnosis been at an older age. I have to face infertility, disfigurement for the rest of my life and the worry that the cancer may one day return. Breast cancer in younger women tends to be more aggressive and for many they do not detect it until it is too late. I am one of the lucky ones in that I found my cancer early. I am taking aggressive treatment because I want to live and I want to live a long life.
On July 23rd of this year I was not on any medication and felt perfectly healthy aside from the anxiety that my cancer diagnosis caused– but on July 24th that changed after I had surgery for a bilateral mastectomy. My cancer was found to have spread into my lymph nodes in what is referred to as micro-metastasis and since that time I have begun chemo. I now take chemo every three weeks until the end of the year and during this time I am undergoing reconstruction. I take many pills for pain and nausea and to help prevent reactions to the chemo. Early next year, I will have my final surgery (and hopefully last) and at that time I will once regain some of my physical appearance through the reconstruction. Once this is done. will be able to begin my life again - -hopefully cancer free forever.
I hope you know that by making the decision to vote in favor of the act you have and are making a difference in the lives of many women who have to face this horrible disease. I know that at my age I was so happy to have a choice. I go through the reconstruction solely on my own choice and I am grateful for that. What I am going through is painful and emotionally, physically and psychologically challenging. I know not all women decide to take the same route as me. I decided that at my age that to have to live many years missing a part of my body was not something I could take. But I had to lose part of me so that I could live and so that I could live with the hope that the disease will not return.
I worry however that the act seems to really only protect group health plans. I worry because I know there are many other young women out there who may not get a chance to have part of their body restored after losing it to cancer. I am thankful everyday when I wake up that I am getting the help that I need- but I also think everyday about the rest who do not. I also worry that I will forever have a scarlet letter on my newly formed chest that screams pre existing condition. I hope that the Women’s Health and Cancer Rights Act of 98 is only part the start of improvement for our country in which one day no women will be denied any treatment whether it be reconstruction, chemo, testing or the surgery to remove her tumor.
This letter is not meant to be anything other than a thank you though.
As I address your letter, I sit in a public plaza in Des Moines, IA underneath a large green umbrella sculpture. A funny place to address this letter it seems. However, I wanted to do this publicly and while I am going through treatment because I need to show that I am the type of person that senators can help. There are so many more of us. I don’t know how many you have helped, but I can only guess the numbers are large.
I write this to you on a Monday and on Wednesday I will go for my second chemo. I understand that each time I take the treatment that my body will become a little more down. I felt good through the last cycle compared to some- but I still felt sick and tired on many days. I felt it was important to do this letter now in the event I feel too tired to later. I know that you probably get many letters and you may not actually read this one yourself. But I hope you do. I hope you do because I just want you to know that I think you did something very good when you voted in favor of the act. As someone who is going through cancer I know that a choice is something that means so much when facing this battle. For you to care enough about the women in this country to allow them that choice means that you thought beyond the walls of Washington and thought about the rest of us…. and that is something I have trouble seeing much of these days.
I addressed each of the Senators who voted for the Women's Health and Cancer Rights Act that are shown the right. Of course, not all of them are still Senators- many - but not all. I did address each letter (yes even Biden's) with the Dear Senator because I wanted to stress the importance of their vote as a senator at that time. Some of the Senators passed away so I addressed the Thank you and signed it- but did not mail them.
I did have the event on camera- and that is one thing that is terrifying to me because I hate being on camera.. but I felt it was important to the work because I needed documentation and I do plan to expand on the use of video. It was a windy day and the same morning my hair had begun to fall out from chemo... I lost my stamps during the piece, but not my hair yet... but when the time comes to shave it off that also will be documented :) ... it was a terrible day to be outside and to do this- but I didn't care!
I encourage you to look up HR 4328 and to see the amount of issues it covered... too many pages for this site to add it.
I felt it was important to thank those who have had an impact on women who are dealing with cancer.. especially in the days we are in. There is so much negativity surrounding politics and the healthcare debate that when I came across this act in my research on cancer, I was surprised. I was surprised that the health care debate has really been going on for some time-- little bits here and there. I was surprised to be writing thank you letters to some Senators.. who I would never have associated with healthcare reform- because the act is reform.. good reform.. something that helps women. I needed to counter the negativity I see so much of and to do a positive response to what I found.
I needed also to do this publicly- I didn't care if anyone stopped. This work was about the very act of doing this.. I call it a performance piece.. I think a happening is probably a better term. I hope that it makes an impact on someone - to see a woman considered young in terms of breast cancer standing up and saying something about how a person in power can make a decision that can have a very positive impact on people's lives.
If you also have or know someone with breast cancer this act affects you. The list is to your right of those who voted for it.. I am sure if you wanted to send a thank you letter that would be alright.
Those who voted in favor
(List from www.senate.gov
HR 4328 Women’s Health and Cancer Rights Act of 1998)
6 Did not vote