entering phase two

ah, yes, the best laid plans do indeed go awry...

the original idea was to write every day here about my experiences, about treatment and cancer and surviving day to day. however, after the first few days it became very clear that doing anything more substantial but sleeping was going to be near-impossible.

the main side effect of interferon treatment is fatigue, and indeed after the first few infusions it began to hit full force. i found myself suddenly sleeping entire days away, sixteen, eighteen hours, unable to keep up energy for anything more than going the half-mile to the cancer center every afternoon where they hooked me up to hydration and interferon and spent a few hours infusing it while i read, slept, tried to write letters to friends. at one point as the neurological effects grew i started a letter to a friend that, when i returned to it several days later, contained more errors in spelling, grammar, and general nonsense than i've made in anything i've written since elementary school. i don't misspell things, but the effects of the therapy began seriously affecting everything from language to memory. there are chunks of time that i don't remember, things i clearly did that i can't recall why or when or how.

there were a certain number of issues that needed to be dealt with, including a very high level of difficulty starting an IV each day that led to the temporary implantation of a PICC line, a longer-lasting IV catheter that was placed 48 cm into a vein in my arm. that simplified the process significantly.

clearly, an interesting four weeks. monday last week was the last infusion, and tuesday i returned to the office, where i have been working at least half-time since. they gave me a week break between the two phases of treatment, and so monday of this week i began eleven months of injecting myself with interferon every monday, wednesday, and friday. the dosage is less than half of what i was given before, but in a highly concentrated form that takes longer to travel through the body because it is injected beneath the skin instead of directly into a vein. i expected it to take a while to kick in, but after i did the first injection it was only a few minutes before i could feel it.

monday was a bad night not just because of the return of pain and fever and headache and other effects, but because we'd learned earlier in the day that the surviving dog from my childhood had become so sick she needed to be put to sleep that night. gramma and i went over to my parents' house to say our goodbyes, and watching this wonderful, beautiful animal that i love going through seizures, pain, and cancer, things i know so intimately now, was extremely difficult. facing annie's death, my own mortality is staring back at me, and seeing her so ill brings back fears of dying a terrible, painful death, with no one coming to the rescue as we can for our animals, relieving their pain when death is inevitable. the nagging question of whether this will be me in four or five years, dying slowly of a terminal illness... it has stuck with me. there has been too much loss, death, cancer, disease in our circle the past year. we've lost three much-loved animals, all to cancer, and in addition to me at least two other people in our extended family/friend circle were diagnosed with breast cancer at almost the same time i was diagnosed with melanoma.

i heard something last night, a quote from stephen hawking, that affected me rather strongly. when he was diagnosed with ALS, and given only a few years to live, he first became depressed, but then it began to seem that the disease wasn't progressing as quickly. he wrote (and this is from memory and not exactly right), "...i dreamed i was to be executed, and realized, there are a lot of worthwhile things to do, if i were to be reprieved." after a rather apathetic life, at about the same age as i am now, hawking realized that there were things he wanted to do and threw himself into them, determined to live as normal a life as possible despite the death sentence that had been delivered. reprieved, he found purpose, purpose that has driven him to fight to live much longer with a terminal illness than anyone expected, and to accomplish truly amazing things in the time he has been given.

there is now this huge question hanging over my life, a question that will determine the rest of its course -- and the choices i make will differ so greatly depending on the answer. if i am to die, there is only the present to do and experience as much as possible; if i am to live, the future is entirely different. i am getting tired of waiting to find the answer to that question.

day two -- before

just a note before i leave for my infusion -- i'll tell you about it later -- but a song that was recommended to me today really caught my attention and often what i write in my journals and blogs online is in the form of lyrics, using words already written that express my own emotions. this is one of those.

Baby I know that all your pain will pass
I know you're sad, but it won't last
I'm betting you everything that I've got in my pocket
when you're staring out into the sky
See what you have, and don't ask why
Things can't be different
They're perfect
-- minnie driver (yes, the acress), "everything i've got in my pocket"

day one, take two

i'm sitting at home, after my first treatment, waiting for the side effects to kick in. i've been gifted with an absolutely gorgeous sunset, one of the best i've seen in a very long time. i can't help but think someone is trying to make up for the crappy day i'm having, or am about to have, anyway.

i'm starting to feel the effects of the treatment -- tired, mostly, and a little off, my words and thoughts not coming out the way i want them, slow. i'm expecting a fever, chills, muscle aches, and other flu-like symptoms, but not for a while yet, 7:30 maybe.

i was very nervous about treatment this morning, but in the end it was easy. i just lay in a bed in a little curtained alcove, had an IV placed in my left arm, and the interferon was dripped in... drip, drip, drip for a half hour or so, and then they sent me home. i think the worst part of all this is going to be the boredom. hopefully my parents will play scrabble with me while we wait.

so that's the status so far. i'll write again, when i *really* know what's about to happen to me...

oops

i take that back.

i got a call at 10:30 this morning from my oncologist's nurse. apparently my doctor went on a trip to arizona for some meeting of investigator's, presumably related to a clinical trial, and no one realized until this morning that he wouldn't be here to supervise my first treatment, which is apparently required in case i have some sort of bad reaction or whatever.

so here i am in this heightened state of anxiety, scared to death and ready for it to just be over and to know what's going to happen, and i have to WAIT. i know, it's only a day, but right now that's a day of constant agonizing and fear and anxiousness that i have to get through, and it's totally thrown me for a loop. i can't calm down or stop being upset, i can't even just sit and breathe or focus, i'm all over the place and crying all the time and i am supposed to be working and getting things together that i need from my office but i can't, i can't think straight at all.

but i'm going to go home and keep the schedule i've already set as if i had my appointment anyway. get some rest this afternoon and tomorrow, and try and get centered again so i'm not a complete wreck tomorrow.

i hate doctors, hospitals, health case, systems like this where people don't communicate and the people who get left out and left behind are the patients.

"oops, i'm sorry, we have to reschedule your open heart surgery, because your doc went to play golf in palm springs today with a drug company exec. you know, very last minute, we had no idea..."

day one -- before

it's 9:30 a.m. on my first day of treatment. i am set to enter the infusion room at 3:30 this afternoon, and since if i stayed home today i'd spend all day worrying about what's going to happen, i'm at work, pretending to write code and worrying about what's going to happen anyway. but at least i'm somewhat distracted.

my parents are coming with me, both, today, which will be good. i think the company, having people there to support me and help however i need, will be really helpful. they're going to be there, one or the other, every day i have IV treatments, which is five days a week -- monday through friday -- for the next four weeks. after that, i get to give myself the injections at home, three days a week.

i'm good at hiding my emotions, but to be quite honest, i'm terrified. not that anything bad is going to happen during the infusion itself, but of what happens after, when i get sick, and how much it's going to affect my other health issues -- seizures and pain, mostly. i'm afraid of the unknown.

i know that many of my family and friends are probably reading this now, and want to thank you all for your support during this difficult time. i will most likely not be able to take many calls during the coming weeks, though gramma can give you status updates if you would like to call and check on me, but i will be updating here when i am up to it, hopefully daily. i won't be taking visitors until i'm through this first phase, and after that it will depend on how my immune system is affected by treatment and whether i need to stay away from possible illness as much as possible.

thank everyone, again, for your thoughts and prayers as i continue on my journey and fight this disease. i could not do this without your support.

and so it begins

the calendar on the side of the fridge is blank for january, but if you turn the page it's a completely different story. i sat down the other night and wrote in all of my treatment appointments, and every weekday from january 31st to february 25th has an entry, some days two or even three. looking at it is frightening, a clear and undeniable reminder of the scale of what is ahead. especially knowing that after this follows eleven months more -- with fewer appointments, but still much the same.

this will be a long and arduous journey, marked by illness, appointments, blood tests, injections, likely hospital visits and a few emergencies. it will be a war waged from beds, couches, and infusion rooms, in front of the toilet and at the dinner table, in the care of doctors and nurses and family members, fighting not just against cancer but against its treatment.

i'm afraid. i'm already tired. i'm tired of worrying and ready to start, and yet the fact that three days stand between me and that first infusion is incredibly terrifying. i don't know what this will be like, and neither does anyone else. that's what's the scariest of all. i'm a unique patient, a special population, a poor treatment candidate and likely to be severely affected by some of the worst side effects, like seizures and severe depression and nausea, vomiting, and loss of appetite (the latter has been noted over and over by cancer patients in my reading as an obvious redundancy if you're already puking).

but regardless of what happens, i'll be writing about it here, so that everyone who is part of my extended support network, all my family and friends, can keep up with how i am doing even when i can't answer calls or see visitors. thank you to everyone for your continued support, thoughts, prayers, and gifts of all kinds both tangible and intangible to help me through this difficult time. i can only get through with all of you standing beside me, and the knowledge that my room, my home is filled with the spirits of everyone who has offered support is one of the few things that at this time gives me any hope.

please feel free to leave me messages in the form of comments here, or in emails at flowernightmare --at-- gmail.com (replace with @, so i don't get spammed). i will be checking email when i can, and hopefully i will have the opportunity to talk to all of you very important people throughout the next year.


j.