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
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.
Valencia, California
I was told I had uterine leiomyosarcoma on August 25, 2004 after a total abdominal hysterectomy. This is my father’s birthday who passed away on August 26, 1982 just after celebrating the day and watching the Late Show. Every year on this anniversary something strange happens on that day… sometimes good…. sometimes bad… I actually got pregnant with my son at 41 on August 26, 1991 after losing another child nine months before.
I thought if I had the hysterectomy on August 23rd, I wouldn’t have to worry about that anniversary with something strange happening to me. So, on August 23, 2004, after I awoke from surgery, my doctor told me all went well. I did not have any signs of cancer. Two days later on August 25, 2004, my doctor came back into my room and told me I had leiomyosarcoma and he would refer me to an oncologist. After he left, I was all alone, but I felt a very strong tap on my shoulders which made me feel like everything would be okay.
After almost five years, I have no evidence of disease. It has taken a bilateral sternotomy to remove 36 nodules, while leaving 13, an exploratory laparotomy to remove an “inoperable” 10 cm tumor, numerous chemo regimines, 28 days of pelvic radiation, a clinical trial, five radio frequency ablations, and lots of love to get here. I am going to enjoy each day now that I am clear of this disease and have two cruises planned.
Vancouver, Washington
I was diagnosed with metastatic leiomyosarcoma as a young mother of three while in my last year of nursing school. I had the whole world ahead of me, or so I thought. What I hadn’t realized was that my soon-to-be-found sarcoma would change my life forever, bringing experiences and friendships from around the world that I would never have experienced otherwise.
Once I realized I was not alone in my battle, I began networking. I was amazed that my very personal diagnosis, fears and need for a shoulder could be shared with so many with just a few keystrokes on my computer. My networking brought me to realize that sarcoma was not always best treated in the country which I resided. Instead, my eyes were opened to what was to become a 3.8 year (and counting) extension to my original prognosis of three months to live.
My extensive research led me to a thoracic surgeon in Coswig, Germany, who, seemingly hidden away other than through his published papers, had been saving the lives of many patients having tumors of the lung since the early 1990’s. My faith in God and confidence in a world of His people, having much to offer each other, led me to have not one, but both lungs operated on by him, removing 269 tumors from my lungs. My research had brought me almost 1/3 of the way around the world to a culture to which I did not belong to place my life in the hands of a surgeon I did not know. But through that experience I made a connection that will live with me forever.
American Samoa
I live on a small island called American Samoa . The population is 65,000. We have one small hospital referred to by many as a dispensary. At the end of 2007, I had lost approximately 50 pounds and from an ultrasound and CT scan, a large tumor in my uterus was found. Days later, I flew to New Zealand for a full hysterectomy and received my official diagnosis of leiomyosarcoma. I was told things were okay and I should return home. Five months later, I returned to New Zealand for follow up. New diagnosis was recurrent leiomyosarcoma. I was advised that my prognosis was very poor.
I then traveled to California to be with family. UCLA Sarcoma specialist Dr. Tap managed my case after 19 cycles of chemotherapy. He ordered radiation treatment, followed by surgery by Dr. F. Eilber to remove the recurrent tumor. I am currently NED. In summary, chemo was horrible, radiation a piece of cake although side effects are still occurring. Nonetheless, according to the surgeons the various treatments contributed to my successful surgery.
At times I wanted to give up or give in to my depression, but I drew on the memories of advising my son to be brave when he went through a similar experience for Wilm’s Tumor as a 2-year old. He lived for 19 years then sadly passed away. My memories of Young Paul’s bravery and countless friends and relatives providing me with support through prayers, short trips to restaurants or to the theater, constant support emails, and various demonstrations of love and concern have helped me reach this point—My 3rd year of renewed appreciation of my life. My testimony is that I am alive due to the grace of God and his angels!
Adele’s Moment in Samoan
Ou te nofo i se motu laitiiti e ta’ua o Amerika Sāmoa. E 65,000 le aofa’i o ona tagata. E tasi la matou falema’i e masani ona fa’aigoa e tagata ua na ‘o se ofisa e maua atu ai vaila’au. O le fa’ai’uga o le 2007 na pa’u ai o’u pauna e 50 ma i se fa’aiuga o sa’u fā’ata manino na iloa ai e iai se tuma tele i lo’u fa’aautagata (se’i tulou). O ni nai aso mulimuli ane na ‘ou malaga ai i Niu Sila mo se ta’otoga e toe’esea ai lo’u to’ala fanau(tulou) ma ia fa’ailoa aloaia mai ai ua ou maua i le leiomyosarcoma po o le tuaiga tuma malika lea e ono faaleagaina ‘a’ano lata ane ma sosolo atu i isi vaega o le tino. Peita’i na logo mai i a te a’u ua manuia mea uma ma ua tatau ona ou toe foi i lo’u aiga. Na ou toe fo’i i Niu Sila i le lima masina mulimuli ane mo ni isi siaki. Na fa’ailoa mai ai ua a’afia a’u i le leiomyosarcoma po o le tuma malika. Na fautua mai fo’i ua fai si tūgā o le tulaga ua iai lo’u ma’i. Na ou malaga ai loa i Kalefonia ina ia ou fa’atasi atu i lo’u aiga. O le foma’i fa’apitoa o Dr.Tap na feagai ma a’u ina ua mae’a togafitiga faakimo e 19. Na ia faatonuina togafitiga tau malosiaga faamaneta uila(radiation), soso’o atu ai ma le taotoga e fa’atino e Dr. F. Eilber ia toeseina le tuma toe alia’e. O le taimi nei o lo ‘o ou i ai i le tulaga ua ta’ua o le “Leai se Faamaoniga o le Gasegase (NED – “no evidence of disease”). E ui ina finau mai tagata ua leai po ua ‘ou saoloto mai le kanesa, ae o lo’u manatu e talafeagai atu le faaupuga “e le’o iai se faamaoniga o le gasegase”. I se aotelega, o lenei togafitiga o le togafitiga kimo e matua tūgā mo le tagata ma’i, ae faigofie le ituaiga togafitiga tau malosiaga faamaneta uila(radiation) e ui lava o lo o iai lava ni ona aafiaga mo a’u e o’o mai i le taimi nei.E ui i lea, fai mai nisi o foma’i tipitipi sa fesoasoani le tele o togafitiga i le manuia o lo’u ta’otoga. E iai nisi taimi na sau ai le fiu ma le fa’atu’utu’u atu i lagona noatia, ‘ae na ou toe tomanatu i a’u fautuaga ma la’u faamalosi’au mo si a’u tama na maua i le ituaiga tuma e ta’ua o le Wilm i le lua o ona tausaga Na maliu o ia i le 19 o ona tausaga. Ua avea le faamanatu mai o le lototele o la’u tama o Paulo, le toatele o uo ma aiga na lagolago mai e ala i tatalo, asiasiga pupuu i fale’aiga ma le faletifaga, imeli ma isi faatinoga o le alofa, ua mafai ai ona ‘ou aulia mai lenei vaitau –o le 3 o tausaga o le faafouina o lo’u agaga faafetai mo lo’u ola.O la’u molimau, o lo o ou ola pea ona o le alofa tunoa o le Atua ma ana agelu.
