Tag: parents

Day 15: Week 3 done

That’s about the most important thing today.  Week three is done.  And I kicked its ass.

I’m pretty tired right now, but a lot of that has to do with all of the excitement from my many visitors, and all of the exciting things we have done.

The pizza party was awesome.  Our hike was really aggressive.  All the way from the bottom of the marquam trail to Council Crest (elevation 1,100 ft), and then back down to my parents house on Sherwood (elevation 600ft).

And today we went out for really nice dinner.  P picked it.

I was freaking out on the way there.  Just an exhaustion/hunger/panic episode.  Tired, and claustrophic in the car.  Everyone was loud and boisterous, and my mom was getting lost, and driving erratically.  I was crying quietly for the last 5 minutes.  And when we finally got there, i just got out of the car at a stop sign, saying “i need to get out”  and walked into an empty field/lot.  I sat down and cried and then meditated.  And then did childs pose.  It calmed me down a bit.

I had to go out again towards the end of dinner because I was so tired I was getting to the point where I couldn’t take it.  So I went out there and did a little sit.  P sat with me for a little bit.  It was nice.  The sun was setting right into our closed eyes.

So much cancer today, so upset

Dinner tonight was HW and her husband JW and P’s parents BD and SD.  HW has an abdominal cancer.  I’m not really sure exactly where it is located.  I think it is ‘worse’ than mine, not that speaking about betterness or worseness has that much value, as it is all statistics, and it is all so random.  anyway, I think I was told once, but I forget.  or maybe i forgot.  as a coping method.

HW was my first grade teacher.  She is BD’s best friend, though BD lives in Napa now and doesn’t get to see her much. HW asked me how my week had been, and i made a hand motion for a wave that started low, got high, and ended low.  She said “We must remember to cherish the good moments.” One can never be too old to learn from their first grade teacher.

HW found out about her cancer at around the same time I did.  Maybe right before.  Maybe right after.  I can’t remember. (Or again, maybe I forgot as a coping mechanism — my memory has been so unreliable through all this.)  She was my first grade teacher.  It feels so strange to talk about Infusion procedures, and trade cancer stories with your first grade teacher.  It is both a testament to how amazing she is, and also how young I am.  Its one of the few kinds of things that make me say “this is not fair” and feel like crying.

She seems heroic.  like, more heroic than me.  I’m not sure why.  Maybe because she is more likely to die.  Or I am less likely to die.  I’m not sure which of those sentences is the right phrasing. Or maybe because she has lost her hair.

Sometimes I wish my treatments would make my hair go away.  People are constantly saying “you look so good” and I wish they understood how much I cry.  and how fucked up my body is inside.  and how hard this drug regimen is.  I wish there was some external marker.  I have two really big scars.  but one is in my groin, so not so easy to flash people (i’m actually grinning a little bit right now.).  The other is on my calf.  When I am riding on my bicycle, I actually imagine what it would look like from behind.  I wear it as a badge of courage.  It is the one visible marker.

Even though everyone keeps telling me how heroic i am being, or how gracefully i am handling this, maybe HW seems more heroic than me because she is just the only other person I actually *know* who is currently dealing with this.  There are other people I know who have gone through this.  And there are the kind-of anonymous people at the Infusion center, but I only know the first name of one of them.  The other Interferon woman who is the only other everyday person doesn’t even wave at me when she leaves at the end of the day.  I tried waving at her, but it was awkward; she didn’t really wave back, but kind of smiled.  She is middle aged, which is still young for the center.  Mostly very old people.

between my colleage and having HW over, there was a lot of cancer talk today.  all day.  it was hard.  i knew it would be hard, and i went for a bike ride beforehand.  i rode hard, and was winded.  i had a lack-of-oxygen-from-exercising ear ache.  it felt good.  and also it was a distancing tool.  i think.  i realize this in retrospect.

I was kind of nervous all day.  about seeing everyone.  i mean, i don’t see many people these days.  i kind of freaked out at the farmers market this morning because there were so many people.  And at dinner, I kind of wanted to just withdraw from the whole thing and go upstairs and cry or write email, or curl up in a ball, or something. but BD sat next to me the whole time and held my hand

I’m nervous about tomorrow.  but i think i should be able to sleep okay. i will take the regular klonopiin and ambien.  and listen to this new CD:

last night i went to sleep listening to this ‘visualization’ CD for stress.  i was too scared to listen to the cancer one.  the narrator repeatedly states that the best time to listen to the CD is right as you are going to bed, and that if you fall asleep while listening, that is very much okay.  so of course, i fell asleep almost immediately when she finished the introduciton.  so i think i’ll listen to that again tonight, and hopefully the anxiety and stress will go away, and i will sleep well

mom just came into my room to tell me i have a 9am appointment with the Naturopath.  I was really peaceful, and then the idea that I was going to have to get up so early, and go to see this guy just to ‘check in’ made me really angry.  and really ready to cry.  I stormed downstairs, drank three glasses of water, almost ate something just to eat something (not hungry) and came back upstairs, and rewrote this entire post to reflect how upset i am feeling right now.  how anxious i am, and how upset seeing HW made me.  upset at my own fear.  upset by my own fear.  oh, god, what a state to be in before bed.

Weekend 1, new side effects

Last night I discovered two new side effects: a rash on my arms and a swollen tonsil.  Only my right tonsil.  Swollen like a little ball.

Apparently the rash is common.  There is another woman who is doing the same Interferon sequence as I am and apparently she developed it on her arms and her legs on Friday; I was unaware, as I was asleep.  I got it Saturday.  Right as I was going to sleep.  I mentioned something about itchy arms, and my mom sprang into motion.  We went searching for the benedryl cream.  It turns out mom loaned it to the neighbors the day before.  So my dad went over to ask the neighbors to borrow it back, but they couldn’t find it.  So then he goes off to the closest 24hr pharmacy (oh, for this I miss New York.)  And about three minutes after he leaves the phone rings and it is the neighbors saying they found it.  I tell my mother, who calls my dad on the cell phone.  The last thing I hear before the Ambien drags me under is the sound of my Father’s cell phone ringing in my parents room, and my mother quietly cursing.

I spent almost the entire day in bed, and ate very little.

In the evening, I rallied and went with my parents to a marriage reception for a family friend. There were a couple of people there who I wanted to see, a ton of people I didn’t know, and almost no one in-between. I made it an hour.  i was fine and then all of a sudden I knew I had passed my threshold and had to go.  When I arrived I had a little jump in my step; I was alert and ready to handle whatever social stuff might come at me.  By the time I left I was shuffling my feet, and had my arms wrapped around my torso in self-comfort/self-defense.

I was proud that I made it at all.

Chemo day 5, end of week 1

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.