this isn't burger king....

i'm in the process of being referred to a new oncologist in Raleigh, NC (where my sister lives) because i am extremely uncomfortable with my current oncologist. i wanted to share with you the latest on why i need to not go to the local cancer care clinic here in Rapid City.

so, it turns out, luckily, that i don't actually have to talk to my oncologist to ask him to refer me to another doctor. thank goodness. when i initially asked about going to Mayo Clinic his response was--well, you can do that, but they'll just send you back here anyway. what? i was reading another blog, one called stage iv. you can read here about her experience with getting a second opinion: http://stageiv.wordpress.com/2011/12/15/practice-makes-perfect/
to say it was NOTHING like mine is putting it mildly. apparently there are doctors out there who expect, encourage and support their patients in getting a second opinion. too bad it's not mine.

so anyway, it turns out i don't have to talk to dr robinson (read dr coldfish, as i've started thinking of him). i called the clinic and left a message for dr robinson to call me. as usual, rather than dr robinson calling me, i get a call back from a nurse. this i'm sure is done to make sure that i don't speak to dr robinson when i don't need to. this is really important because while i pay several hundred $$ to talk to dr robinson for 10-15 minutes, i don't deserve to simply be able to have him call me back. yeah. like that.

the nurse calls me back, and i explain what i need. as luck would have it there is a "patient advocate" at the clinic here. she calls other clinic with referrals. this does make it all a bit easier, because well, i get to talk to her. and she is a bit easier to talk to. and it's far easier to say to her that i really don't like dr robinson and that's why i want a referral, than to say that to her face. BUT, here comes the interesting part. i explain that i just don't feel like dr robinson is a good fit for me. that i don't feel comfortable with him and that given that i have CML, a disease that i'll have to deal with forever, most likely, that i want a dr that i feel good about talking to. she points out to me that there are two oncologist on staff there. i explain that early on i asked for a referral to one of them, and he said no. she says yes, that doctor, dr tanglin, even when she goes to fight for a patient, will often respond "this isn't burger king, you don't get it like you want it". HOLY COW.

i'm paying thousands of dollars for this care. THOUSANDS. and my insurance company is paying further THOUSANDS. like thousands and thousands and thousands. i should get "it" (ie care) like i want it. i should be able to expect to respect my oncologist. to trust him. to feel like he is listening to my concerns and responding. even if i'm an idiot. even if i exaggerate. even if i'm not dying. because really? i'm paying for him to at least pretend that he cares. heck, i'd take pretending to give a shit. i expect my counselor to care--and i pay her a whole lot less. i expect my kid's teacher to care--and they get paid way less. hell i expect my dry cleaner to care, at least pretend that they care, in that moment when they are dealing with me, about the problems i'm talking to them about--and i pay them very little. for my THOUSANDS and THOUSANDS of dollars, even if the dr doesn't give a fig, or two cents or a shit about me, he should act like it. pretend. put on a good face. bartenders do it, servers do it, all the rest of the people in service industries are expected to pretend they care... doctors should to. they get paid well enough.

then, then it got worse. i tell her that i've talked to the director who has explained to me that leukemia cases generally get referred to mayo or denver. and that i don't know why dr robinson even took me. and that when i asked for this referral to dr tenglin, he turned me down. and then she says IT. she says "yes, our hematologists mostly don't take leukemia patients like me, because (wait for it) they're too busy dealing with people who have real cancer. YES you read that right. REAL cancer. 20  years ago this cancer, CML, killed everyone who got it. one was lucky to live 3 years past diagnosis. i get that today, with current treatments, i get to expect a reasonably normal life span. BUT i also get to live with all the side effects of my meds FOREVER. there is no end. i'm not saying that makes it all even.

i totally get that i have a type of cancer that isn't as serious or deadly as many others today. but suggesting that it isn't REAL cancer? fuck you. this is why i won't be going back. if this doctor in raleigh isn't the right option, apparently there is a oncologist in gillette WY who has at least 2 CML patients.

i will not return to doctors and a clinic who don't consider my cancer to be REAL cancer because they can't operate, they can't zap it with radiation or iv chemo and it likely won't kill me. i deserve more respect than that. i deserve someone who thinks that my disease is worth treating. not some sort of "fake" cancer.

so, dr. boles... i'm hopeful that since you treat leukemia regularly that you will consider this REAL cancer worth your time and effort. mostly cuz i'd rather not have to keep looking... and i will....