Tulsa, Oklahoma
[Suzanne wrote the following note to her friends and family a few days before she died of leiomyosarcoma in November 2008. We thank her husband, Ed, for sharing it with us.]
Hello my dearly loved friends and family,
How often do you go to a funeral or memorial and get to hear from the deceased? Well, this is one of the few gifts that cancer gives. It gave me time to say goodbye to those I love. Although I had to fight for my five years after diagnosis…it did give me time to give hugs, kisses, and appreciation to all of you who mean so much to me. It gave me time to see Andrew got to college, so see Adam make it to high school, to see Dana find the love of her life and get married, as well as becoming the greatest lawyer I know. And Tommy and Charles becoming true grown men…no longer boys…and great contributions to our world. And Jennifer…turning into a lovely woman and mother.
And my husband Eddie…it gave me time to realize I had married the man I was meant to be with…it gave me the opportunity to let go of the petty things we observe in our marriage and look at the bigger picture. And in the bigger picture, my marriage to this wonderful man was my greatest gift.
All of these were gifts. I was able to observe and enjoy, even with cancer looming over my head.
I want all of you here today to know how blessed I am (or I guess I should say how blessed I was). My life may have been cut short, but even with that shortened time period, I had it all!!!! A life I would not trade with anyone.
I want to thank all of you for the contribution you made to giving me that wonderful life.
God bless…
Suzanne
Los Angeles, California
Kathy Eldrid, RN, was my online friend. We first met online on a sarcoma list in 1999, and we first met in person in 2001 when she came to California to visit her children for her 50th birthday, and Kathy participated with our LA area sarcoma support group. Kathy was originally diagnosed with PNET (Primitive Neuroectodermal Tumor) in 1993 after several months of misdiagnoses, and survived for 16 years after diagnosis. Kathy adamantly researched for ‘innovative’ treatment options for herself. She once participated in an experimental immunotherapy trial (cancer vaccine) run by Dr. James McCoy (and responded), but Dr. McCoy died suddenly in 2000 and the trial was abandoned. Kathy felt this trial gave her additional years of survival.
As to a ‘Sarcoma Moment’, I don’t know, there are so many. Kathy and I regularly corresponded with each other after we connected. Once someone sent out a link to a cancer vaccine site in Argentina, and Kathy mentioned that even though she spent the summer of 1969 at the University of Salamanca in Spain, her Spanish was rusty. I also spent the summer of 1969 at the Univ of Salamanca in Spain and wrote her about this. We found that we were each at the University of Salamanca. We weren’t able to get together (in person) to talk about this until April 2008 when I visited with her in Maine and brought my pictures from 1969. And we reminisced…
I mention this because sometimes ‘diversions’ from sarcoma treatment are also helpful. Kathy was a very ’special’ individual and a very motivated person, and I’m sure she was also special to others. I will certainly miss her.
New York, New York
“This is my first letter to the LMS support group. I was diagnosed after a wide resection of my chest wall and left upper lobe. Warmly.”
This was the first message sent, on Feb 14, 2001, to the L-M-SARCOMA list by a new subscriber. The same day the subscriber wrote, “I also do not know much about what options are available.” and “I just joined the group. Maybe I can help?” These three examples are, in a nutshell, pure Doreen Kossove, a patient advocate extraordinaire, who helped, over the next 8 years, countless sarcoma patients.
Three days later she wrote “Hi, I am from Pietermaritzburg, South Africa, an American pediatrician, doing family medicine here since 1978. Last month, I had a chest wall & Left upper lobe resection for an isolated leiomyosarcoma. The pre-op cat scans showed no other lesions in chest or abdomen. Resection margins free of tumor. Intermediate grade…but it grew fast, to about fist sized in 6 months. I need to discuss causes, treatments with a sarcoma expert. Can someone give me name/tel no/email address? My pathologist and oncologist here will need to link up…I will need a cKits test…and god knows what else…it is either EBV related [I have chronic relapsing EBV & Hashimoto's thyroiditis], or possibly uterine [TAH for fibroids 1995]…we are checking on that now…I need to know whether to go for irradiation in next 3 weeks or not? As well as other questions.”
Then, in a short period of time, Doreen built leiomyosarcoma.info, the best site about this rare disease. She also counseled thousands of patients over the next 8 years, via private mails and various listservs.
Seeing a human being becoming a great center of knowledge, and driven to constantly share all of it with as many people as possible has certainly become one of the main driving forces in my life.
Doreen passed away on Feb 6, 2009 after surviving many near-death experiences.
Columbia, South Carolina
Grand Central Station to New Haven was a train ride I took many times during 2003 and 2004 to see my dear friend. I was grateful I was so close by during this time to be there for her. We are so very different, but have managed to stay friends for over ten years and I appreciate her so much. She’s an amazing person and I am incredibly proud of her and her accomplishments.
There are so many moments I remember and it’s hard to choose one that means more than the other. One I remember was after her surgery. My family had come to visit me in NYC before Christmas, but it was also the time of her surgery and I was not going to miss seeing her. I hopped on the train for a quick trip back and forth. I was a little apprehensive seeing her since this surgery was no joke and I had no idea what to expect even after all our conversations leading up to the “big day.”
Naturally she made it through as I knew she would, however I certainly wasn’t used to seeing my sweet “straight” friend so high on drugs! HA! Of course we chit chatted, but mostly about nonsense. Then her husband came into the room soon after and I wanted to get the low down from him. During our conversation, she came to again and we must have been laughing about something in order to lighten the mood. Poor girl, she thought we were talking about her or making fun of her for something and it was hard to explain to her that we weren’t. I felt so badly even though I knew she wouldn’t remember any of it. And I don’t think we ever talked about it, ha! 
Manama, Bahrain
August 2008: Istanbul, Turkey. We had moved from our home in Bahrain, thousands of miles away with the hope of Sami doing better in a better hospital with the latest treatments. Sami died September 15, 2008, from Osteosarcoma.
Sami and I used to take daily trips via a hospital-provided shuttle for about a half of every day to go to the hospital. Sami was taking radiation therapy for lesions on his lungs. We were tired doing this every day, but this very day Sami had woken up looking so peaceful, and while we were in the bus he held my hand looking out at the beautiful Istanbul landscape and said, “I love these bus rides, they are so peaceful.”
What I remember the most is his face. Yes, he had lost most of his hair, lost a lot of weight and hardly looked like the guy I met, fell in love with, got married to, but to me at the moment he had never looked more handsome, beautiful and happy. We looked at each other and smiled; then, I put my head on his shoulders and briefly closed my eyes in an attempt to remember this moment forever, and I did. It feels like it’s etched in my mind and every time I close my eyes, I can remember him exactly the way he looked, how his hand felt in mine, how he smelt, and I even get a feel of the surroundings that day, the wind in our faces.
Samia’s Moment in Arabic
