My name is LaDonna. I have leiomyosarcoma of the kidney, stage IV B, and I am working very hard to rid myself of this problem. I had a radical nephrectomy in November, '95, after which I was told that things looked quite grim and that my only hope was chemotherapy as the cancer had spread throughout both lungs. Chemotherapy, I was told, would not cure but might extend my life a bit and make the end easier. My physicians were surprised by the result of the chemotherapy, Adriamycin/Ifosfamide. My metastases began to respond to treatment immediately and by May, '96, I was down to two non-growing mets. I now have many more newly seen or returning metastases (about 28), all of which are pea-size or the size of a garbonzo bean. Also, my primary tumor seems to be returning and I just had a nodule removed from my scalp. I had lung surgery to remove 11 metastasies from my right lung in mid May, '97. At this time, I am taking part in a vaccine study at the University of Michigan. The vaccine study is under the direction of Dr. Vernon Sondak. My friends and my family believe I am a miracle, and so do I. However, as I said earlier, I have worked hard to get to this point. I have gained back all the weight I lost, all 50 pounds (I am not happy about that), I look very healthy, and I am eating better and getting more sleep than I did prior to surgery. I am also getting more exercise.

In addition to struggling with leiomyosarcoma, I am the wife of Stephen, and the mother of three children, Michelle and Michael, who are grown and married (Michelle has three little ones), and Kristjan, who is eighteen and is a senior at our local high school. Kris plays the alto, tenor, and soprano sax, the piano, the keyboard, and the drums. He also writes music, what I call soft jazz, and has his own band, DRiFT, for which he wrote a web page. Kris will go to Augustana College next year, and Stephen, my husband, is Associate Dean of Students at that same college. I did have a small antique business, which I sold in May, '97, and I am a writer, mostly history--local and cultural. Excluding a book of short stories that I translated from Danish, all my work has been published--most of it in small journals, though I did coauthor three books (I wrote one or more sections of each). I plan to get back to my writing soon.

Had I not found the Internet I would feel very alone because leiomyosarcoma is extremely rare and my original prognosis was not good. However, over the past year and one half I have seen my prognosis go from VERY poor, to poor, to fair, to stable, to good!!!!!! Although I am quite sure that my doctor would now put me back to poor, I and my family and friends are determined to overcome the obstacles and leap me back to VERY good :-)!

I am not the only one in my family that is dealing with cancer. My brother-in-law was operated on for squamous cell cancer of the throat two years ago (he is doing well), my brother died of cancer three days before my initial surgery (November, '95), and my mother was operated on for squamous cell lung cancer in October, '96. Mom has completed radiation treatments and seems to be doing fine. My father died of colon cancer 17 years ago. I have to live as my sister is about to fall apart.

I could not have reached this point without my excellent medical care at the U. of Iowa (Dr. Williams was my surgeon and Dr. Dreicer was my oncologist), or without the help of my family and friends. Everyone concerned has been very attentive and caring, especially my husband. Throughout the five months of chemotherapy, he had a fire lit in the fireplace each morning before I woke up and my coffee was made and on the table by my chair. Also, although he does not like to drive, he took me on nearly every short trip I wanted to go on and he played cards and dominoes with me almost every evening during my many hospital stays. I think he would do nearly anything for me, as will my children. I am truly blessed.

A friend of mine has asked me to go to one of our local churches and suggest that they set up a computer center for cancer support! This is a wonderful idea. I told her I would certainly do so. The Internet is a wonderful stress-reliever and research tool!

I will add to this story after the completion of my vaccine therapy. Hopefully, the news will be good. If not, I will go on to another therapy.

Check out my web page to see pictures of me and my family!

LaDonna Breidfjord Backmeyer

LaDonna was co-owner of the Sarcoma and Leiomyosarcoma (L-M-SARCOMA) mailing lists. For information on subscribing go to the ACOR page. This vital community is one of her gifts to us.

LaDonna died on January 24, 2001 far outlasting her prognosis, and long after exhausting the standard treatments. She was an inspiration to many as an activist - even when she was terribly ill and as co-founder of the L-M-SARCOMA mailing list - an exemplary and prototypical example of the power of people using the internet to create a powerful community.