I made it through the first week.
I’m tired, and feverish, and really irritable. My Parents are trying to figure out what I want, and how to help me, and how to make me happier, but I just want to be left alone. I tell them that, but they aren’t listening.
Of course, I could not make it through this without them. At all. But I also wish I had some more distance. I need to process this stuff in my head, and I need quiet and alone time. And my mom is being Jewish-mother on me. Super well intentioned, but won’t leave me alone sometimes.
I went through a big debate about whether to come home. I grew up here, but I don’t live in Portland, I live in Brooklyn. But Brooklyn is loud, and my hospital (Columbia Presbyterian) is all the way at the north end of Manhattan. And my aparment is tiny. And it is so hot in the summer. As I put it in an email:
April 29, 2008
i start the interferon drug treatment roughly June 1st. i’m trying to decide whether i should stay in nyc for this, or go back to portland. i get a high dose IV for 1 month, followed by 11 months of self administered low dose. toxicity is high, and hits hardest in the first two weeks. not sure whether it would be better to be around friends, my brother, and my mom (who would come out), though with a harder time of getting to the hospital, or to be with my parents, their dogs, and one or two friends in portland, though with easier access to the hospital. i also feel like being able to go into the studio if only for a few hours, a few days a week, will have grounding effect on me - its because of the people in the lab more than the actual working (i can do that from home, or from portland.) also the airplane flight will be hard, and is not recommended post-surgery b/c of swelling issues. i’m honestly torn, and unsure. though i have some time to figure that out.
But I decided to go home:
May 24th, 2008
i made the decision to go to PDX to have the Interferon. the range of reactions to the drug vary from 4 weeks of 103 degree fever, to a bad fever for the first two weeks. it is hard to not know which will happen, but i would rather be in PDX feeling better than I thought, than alone here in NYC with a 103 degree fever for four weeks. and if i do have 4 weeks of high fever, i would def rather be surrounded by quiet, trees, dogs and parents.
the dr in PDX is going to accept my insurance’s out of network pay rate. i have substantial out of network deductible, which sucks, but after that, they’ll clear it all fine. it is worth it to be in portland, i think.
My trip to PDX was delayed because the incision is healing slower than expected. It is quite long, and they had to go quite deep, and it is right at the crease of my leg, so it is agitated every time i move my hip joint. fun…
i have a plane ticket leaving June 9th, returning July 19th. my first appointment is june 11th. that is a wednesday. i don’t think i will be getting the Interferon that day. i might start later that week, or i may start that monday. not sure, and prob wont know until i have that first meeting.
I guess it has been so long since I have spent more than a week with them that I underestimated the parental factor. I did have some terms (in the next post), but I forgot how my parents can be. It reminds me of when I went on a trip with my father to visit colleges in New England. After every campus tour, or class visit he would ask me what I thought. And I would say something like “I don’t know,” which really meant “I don’t know yet because I’m still thinking about it.” But I hadn’t learned that about myself yet. But he kept asking. And at some point I cracked and I think I yelled at him, and then didn’t say anything for 24hrs, or something. Maybe he got the point, but i doubt it: its not like I was the best communicator then. I think he was pretty pissed too: flying me across the country and driving me around, and I wouldn’t even tell him what I thought of these things? The problem was *I* didn’t know what I thought of them. I had to process. I needed time to understand my experience. Same here, kinda.