one two three jump

lake superior; you just have to run in and throw yourself into the cold without thinking. i did it three times this summer!

i've always hesitated before jumping from a rope swing. there was one up near school. you'd have to park next to some train tracks and walk across big rocks to get to the edge of the river; in the spring on the first warm days of the season inevitably there would be a phone call or an email (this was, after all, before the time of text messages) and a group of us would head out to go swimming. the water was usually high from spring rains and it beckoned during the last week of classes or finals week, much more so than the books we all should have had our noses in. the swing itself was more like a trapeze. you had to climb some rickety steps someone had long before nailed into the tree to get to a small perch where you'd take the swing in your hands. the handle itself was wrapped in athletic tape, offering some grip, but not much. the initial swing, once you left the comfort of the perch, took you directly over large tree roots. you had to be committed to holding on well toward the apex of the swing in order to make it into the water. it scared the snot out of me. the first time i went up, i sat and shook and hemmed and hawed over it for interminable minutes before finally going for it. i had to be the one counting, "one, two, three" to myself - i and i alone was in charge of my destiny. the next time was more of the same; the third time i just decided to jump in from shore for my swim. the stress just wasn't worth it.

there was a rope swing near dartmouth i actually enjoyed. i looked forward to trips there during the hot summer i worked near hanover. the rope was a community attraction, and it was cut down time and time again only to be resurrected by group upon group of students. it hung from a huge old tree just over the connecticut river. you just had to hang onto the rope and swing out a bit - the river was right there and there was little room for error. just jump, yell, and drop into the cool river. the current seemed more dangerous than the jumping, and in a summer with little rain there was little to take you away.

there is something to be derived from these tales; when it is scary and uncomfortable, it takes me a long time to analyze and do it. when things are simple, i can manage to have a fine time.

i've been trying to figure out whether i should leave the study i've been involved in for the past year and a half. if it was completely easy, i'd leave it behind in a heartbeat. i am scanned every six weeks, which adds up to a whole lot of radiation exposure that's probably going to give me breast cancer or leukemia one of these days. i see my healthcare team every three weeks. that's a drive to philly, parking, copay, and waiting around for drugs - all of which i am happy to do, since it is pretty much a social event every time. but that's time my team could be spending doing something else. i know they are there to take care of me but i have been really lucky. i haven't had evidence of disease in more than a year (touch wood). there's nothing to see on the scans. the radiologists are telling them to stop sending me.

my drug was approved by the fda about a month ago. it is commercially available for just $9,600 (or so) a month. we put in a request for authorization to my prescription plan and it has been approved. all i have to do is pay my copay and the specialty pharmacy will send me a month's supply of pills. the idea is that this process would continue, uninterrupted, for the foreseeable future. i'd have to get scanned every three months, which is standard protocol for patients in my position. i wouldn't have to go to the hospital for three months at a time. i've been going every three weeks for nearly four years. you begin to see this could be an exciting, and nerve-wracking change. because, of course, as great as it would be to move onto a different part of this adventure, at any time it seems my insurance could change or they could decide not to cover the drug. interestingly enough, i don't have the kind of income to foot the bill for this drug every month. but it is keeping me alive. so you see the conundrum; you see why this seems to be more like the first swing than the second.

i've been so fortunate in the past five years. i have had amazing care and have had no problems at all with copays, hospital accounting, or drugs. i gained access to a fabulous and ground-breaking clinical trial and have reaped awards that just two years ago seemed impossible. right now i live as normal a life as i can. of course, i could have my scans next week and i could have new nodules; this is the constant question. but i don't think they'll be there - i am feeling so great. we'll have to make a decision; i have reached out to important people in my life and gotten their opinions - i've even reached out to professionals. i know where everyone stands, and they are all in agreement. and they all agree that we just don't know what's going to happen.

me, i think it will be fine. i'll hit the water, go for a swim, feel refreshed, and continue along. but the not knowing is the $9,600 question and i just haven't finished wrapping my arms around the possible outcomes. i've been spoiled by my good fortune and i don't want to give it up.