in fact... my first name begins with a d... so maybe i dont have a disorder, i am just obsessive compulsive me. when i was 16 yrs old i worked a bagel shop as a sandwich maker... this company's name tags said "totally completely obsessed" and then your name with a little icon of a bagel baker. my parents thought this was hysterical... and swore they must have known me to put that on my name tag... i insisted it was on everyone's name tags... my parents persisted with their harrassment by saying "yeah, uh-huh... sure they do".
so you can see this diagnosis is not the first my ocd has flaired up... but honestly, if you dont know me well you might assume it is.
back to my obsession- treatment options... i was so dead set against interferon... but it seems to be my only option besides watch and wait. it frustrates me that this disease is as sneaky as it is... my dr tells me i am stage 3b with high chance of recurrence... but also that i am ned (no evidence of disease). unfortunately this particular cancer can be dormant in your body until it decides to attack... so those scans didnt show anything, but that doesnt mean its not there... its like it has internal organ camouflage... wth. so i could watch and wait because as of now i seem disease free... or i can agree to a year of interferon. and dr s had a valid opinion saying that i am relatively healthy now, so this is the best time for me to try interferon as an option while strong enough to combat the side effects. not to mention i have every reason to fight.
at this point, i cant believe im saying this, but i think i am going to agree to interferon... i figure now is the time to try it... instead of after this disease decides to come alive inside me and i am already sick. besides, i figure if i lose weight as a side effect i am alright with that... i have seen patients lose average 20 - 30lbs in the first month of being on interferon. and that puts me at my goal weight. not the best way to lose it... but once its gone it will be easier to keep off. i know it sounds kinda morbid, but hey, thats my silver lining for now...
i was hoping to be part of a study for stage 3 patients that tested ipi vs. interferon... but i found the treatment center doing the study does not take my insurance. i thought these trials were covered because they are using you as a guinea pig... apparently i was wrong. and that really upset me. i thought trials were to find a cure, or at least more research towards said cure. aparently not... they bill your insurance, then profit off the research you made possible... disgusting. why do they get to double pad their wallets at someone else's misery? i was anxious about the trial because i wanted to help... at least then whatever i put myself through in the name of treatment could benefit others in my position... to find that the trial too is part of the greed machine...
thanks papa "pretend" for the topic idea... and thanks everyone else reading this too. i just hope my ocd, and crazy ramblings help others too. and i really appreciate the feedback you guys have given me over the past few months.
Please understand that the process of discovery for treatments for your melanoma is not grounded in "greed". Research Drs make vastly less money than private sector doctors and are doing so because they believe in their quest to find cures. They too deserve a salary for their discovery process. Research Drs devote their lives to solving the mysteries of the biologic process of disease.Once there is enough research data to move into human trials , the patients in the studies contribute in other positive ways. Yes , they are guinea pigs, but without those collective contributions, finding a cure would be impossible. It's not "greedy" to be paid for working and especially to be paid for doing work that saves lives. Having read other Melanoma blogs, I have discovered that there may be other options to become part of a study. Don't give up. There are folks out there who care and want to help you. It is a very scary diagnosis and you deserve to be overwhelmed. But misplacing this helpless feeling with hopelessness could lead to closing options available to you. I don't know where you live, but I read about many who travel for treatment. There are nonprofits out there to help so check out other blogs if you haven't already. Don't get discouraged. There are new discoveries every month. Blessings to you.
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