By: Dennis James Partington
These days when I meet people whom I haven’t seen for some time they tell me how good I look. Slim, tidy, relaxed, laid back. Sometimes I confide that I have this very expensive drug habit running about $50k a year. They look at me with the big question mark. Sometimes I tell them I have GIST, they don’t have a clue. Sometimes they ask what is GIST, and I say “oh, just a terminal disease”. Then it gets complicated.
I tell them I take this wonder drug Imatanib that keeps me alive, but eventually will kill me, if I get lucky to live long enough. So I say, well I am more than two years passed my ‘due date’, you know the ‘do not use after date’. June 2011 I was told by the Oncology Doc- tors to go home and get my affairs in order be- cause I would be dead before Christmas. August 2011 I started on Imatanib. By December I was the star patient. I had significant tumour shrink- age; my case was featured in several presentations, my insides displayed for all to see. Then the offer came! The offer I could not re- fuse. The opportunity to vanquish the monster inside of me.
January 2012 I donated several body parts to science. Half a stomach, all my spleen, a third of my pancreas. Then in April a chunk of liver. A few months later I even threw in my Thyroid just in case it was another cancer. Remember having can- cer does not protect you from cancer! Nowadays I plan day to day, a week ahead, think about next month, perhaps. I refuse to rush, I never run, I do not have a cell phone, I say ‘No’ many times a day! I live my normal life, nothing pre- tentious; I just plod along and in- dulge my interests. I am even thinking about return- ing to the masses of the great unwashed and getting a job. Just think, with my attitude, my experiences, my disease, no one can pressurize me, make me feel un- comfortable, I listen, if I agree, I do, if I do not agree I say so and to hell with conse- quences.
It a nice place to be, liberated by a disease. I think having GIST has opened up my world; certain- ly I have had to change to accommodate the monster living inside me. I am learning not to be too judgmen- tal, to keep my mouth shut, very difficult. I am more compassionate. I have learned how to turn it all off. GIST has made me a better person. Advice to pass on. Cancer is a life threaten- ing disease, make the most of it. Having cancer gives you another problem, Men- tal Health issues, deal with them, get help! You are your own Advocate, get edu- cated fast. Nobody will do it for you, do not become a victim. Do not let the sys- tem discriminate against you. “ Then the offer came! The offer … to vanquish the monster in- side of me.” firstname.lastname@example.org “ GIST has made me a better person.” ”Blessed are the cracked, for it is they who let in the light.”