Raleigh, North Carolina
When my husband scheduled surgery for a supposed leiomyosarcoma in his abdomen, I was not too apprehensive because my father had successfully been operated on for the same condition four years earlier. I thought LMS was hardly a cancer at all, since my dad’s surgeon said he was cured. My husband’s surgeon aborted the operation and declared the tumor inoperable. The next morning an oncologist entered our hospital room at dawn and explained that my husband’s tumor was not LMS, but gastrointestinal stromal tumor. It was Greek to me. A new drug (Gleevec) as costly as diamonds was supposed to help.
I was in shock. I had never considered that anyone might travel more than a few miles for treatment. I had never imagined that I would need to study medical papers to inform myself and our doctors. My “moment” was the realization that only a single new drug stood between my husband and death, that this drug was a stop-gap rather than a cure, and that his sarcoma was rare enough that we could not depend on even excellent local physicians to be highly informed about it. My own diligence and vigilance in learning about GIST and advocating for my husband was evidently to be needed to help preserve his life. I felt alone and afraid.
I joined GIST Support International, first to learn, now also to share information with others. I became a daily PubMed reader. Knowledge enables patients to ask good questions and to recognize whether their treatment is up-to-date. My dad was quite lucky that LMS did not recur. If it had recurred, he would not have fared well without becoming more informed. Sarcoma patients must be savvy, and unbiased support groups are an invaluable resource to help patients participate in their care decisions.
Greenville, North Carolina
My daughter was diagnosed with a sarcoma tumor (Gastrointestinal Stromal Tumors) along with 2 other tumors (pulmonary chondromas and paragangliomas) by Carney Triad. One moment that will always stay with me is when the surgeon told us that our teen daughter still had two thirds of her stomach after we expected a full gastrectomy.
While the medical aspect of cancer is obviously the most vital piece of the puzzling journey with sarcoma, the emotional and social aspect is also important, especially for the teenage sarcoma patient. I was mentally prepared for dealing with my daughter’s probable depression associated with a feeding tube and a total gastrectomy. I definitely thought about all of the pizza parties and movie popcorn that she would not be eating in the near future.
The doctor said one of the tumors showing up on CT simply was not there; therefore, she was able to loose much less of her stomach than anticipated.
Sometimes the extra unexpected blessings you get in the journey of dealing with this life threatening disease help remind us as parents or loved ones that life with a sarcoma patient is not just about all of the medical stuff. Sometimes you have to remember to just be thankful for the little things in life. I am so excited my child can still be vibrant and a part of just normal teen living in between the medical “stuff.”
Messina, Italy
I was diagnosed in August 2002. When the doctor told me that I had a GIST, I knew nothing about it; even the name was unknown to me. But I soon understood that this disease would probably leave me 15 to 24 months of life. I went home to wait for not conservative surgery.
A week later a woman’s voice on the phone asked if I wanted to be enrolled in a new drug trial for GIST. She did not promise results, but I said to myself, “Well, I want to be of help to research, and it might save a life, possibly my life.” My answer was ‘YES’.
After almost seven years I am still on that drug. I am alive, with good quality of life other than some side effects of drug. I saw my daughter successfully graduated: she is now an MD, radiologist. I am now well-educated about GIST, and have found many “GISTers” and friends in the AIG (Associazione Italiana GIST) group. Together we fight against GIST, helping many others to overcome difficulties of the moment. I have never met the woman whose voice gave me this chance at life, but I bless her all the time.
Gabriella’s moment in Italian
Mi è stato diagnosticato un GIST nell’Agosto 2002. Quando il dottore mi disse che avevo un GIST, non sapevo nulla di questa malattia, perfino il nome mi era sconosciuto. Ma ho capito presto che questa malattia mi avrebbe lasciato non più di 15/ 24 mesi di vita. Sono tornata a casa aspettando la chiamata dei medici per un intervento chirurgico non conservativo. Una settimana più tardi una voce di donna, al telefono, mi chiese se volevo entrare in una sperimentazione di un nuovo farmaco per i GIST. Non mi ha promesso nessun risultato, ma io ho detto a me stessa ” bene, voglio essere di aiuto alla ricerca e ciò potrebbe salvare una vita, possibilmente anche la mia stessa vita. La mia risposta dunque fu “SI”. Dopo quasi sette anni io prendo ancora quel farmaco, senza essere stata operata. Sono viva, con una buona qualità di vita, a parte alcuni effetti collaterali del farmaco. Ho visto mia figlia laurearsi con successo e diventare un medico radiologo. Adesso io sono molto istruita ed informata sul GIST, ed ho trovato molti altri GISTERs e amici nell’Associazione Italiana GIST (A.I.G.). Insieme combattiamo contro il GIST, aiutando molti altri pazienti a superare le difficoltà del momento. Io non ho mai incontrato la donna, la cui voce mi ha dato questa chance di vita, ma io la benedico sempre ogni momento.
Hong Kong, China
I was diagnosed with GIST in February 1998. I thought it was a miracle not to have to undergo chemotherapy after surgery. Five years later, after having many symptoms of different diseases, a CAT scan showed the cancer was back and it was much, much bigger than the first time. The surgeon did not give me much hope. I cried because I thought I just had few months to live. Thank God, I had two angels (two generous young women) who gave me hope, friendship, love, tenderness and wonderful assistance, night and day during my time in the hospital. I wasn’t alone. God was with me through them. My family was also around me — my only daughter (I have three boys) was comforting and supported me and, of course, my dear husband. Thanks to them, I was able to pass through the challenges and keep going, accept having cancer, start Gleevec, get better little by little and face my third surgery.
I’m a very happy person, happy to be alive. I appreciate everything. I try to live a normal life even though I cannot do the same things I used to do. I celebrate every birthday. I’m lucky and I’m blessed. I have wonderful doctors who take care of me; many people around the world pray for my health, what should I ask more? Of course, everyone would like to live till 100 years but the quality of my life is much better compared to those who have good health and money and do not appreciate the gift and the good things they have. I thank God for the wonderful friends I have found in Association GIST with whom I share my experience, my hopes, anguish and successes. I’m grateful for the life that God is giving me.
Lucilla’s Moment in Chinese
我在1998年2月發現患上Gist，手術後奇跡地不用化療。五年後，我再有很多患病的象徵，在接受索描後，証實癌症復發，而且瘤腫比第一次大得多，醫生也沒有給我太大希望。我痛哭因為我想只剩下數個月壽命。
感謝天主，有兩位天使給我希望、友情、關心、呵護及幫助，日夜在醫院照顧我。我並不孤單，透遇她們天主與我同在。我的冢人圍繞著我，天主派了兩位天使(是兩位年青女士) 及我的唯一女兒(我尚有三個兒子) 來安慰及支持我，當然還有我親愛的丈夫。感謝他們，我渡過一切挑戰，繼續上路，接受患癌病，開始接受Gleevec治療，並逐漸康復。後來，我又需要接受第三次手術，也復原了。
我是一個十分快樂的人，快樂仍能生存。我欣賞所有事物，我盡量嘗試過一個正常的生活，需然有時不能再做以前可以做到的事。我慶祝每一個生日，我是幸運及被祝福的。我有最好的醫生照顧我，世上有很多人為我的健康祈禱，我還要求什麼呢？
當然，人人都希望活到一百歲，但我的生命比較許多有健康、有錢但不懂得欣賞他們的恩賜的人更有質素。我感謝天主使我在GIST的組織裏認識到很多好朋友，我可以與他們分享經驗、希望、痛苦及治病的成功。
你看，我的經驗並不特別，我不是一個特別的人，但我感謝天主賜我的生命。
