Tag: friends

Day 13, the happiest I’ve been

I’m the happiest I’ve been in half a year.  For a number of reasons.  The advice/counseling I got from the Naturopath on Monday has really helped.  It is a mental game, and as long as I stay tough mentally and take care of my body, I am doing much better.

It helps that they also reduced my dose after the break I took because my liver function was too elevated it.  They dropped it from 20 MIU/m2 to 13.3 MIU/m2.  I learned about what the whole MIU/m2 thing is too.  They give me my dose based on the surface area of my body(!)   So, for every square meter of surface area, I am now getting 13.3 Million Units of the Interferon drug.  I am getting 28MIU, so I guess I have a surface area of 2.10 m2.  I guess they calculate that from my BMI.

And then when I got home from my physical therapy & yoga my former roommate and best friend P was sitting on the deck chatting with my mom! He came as a surprise visit.  It was awesome.  I was on a high.  He took me to get my infusion.

Then we went on a hike on the Marquam trail.  It was at dusk.  Beautiful.  And it was for 45 minutes, and we were walking really fast.  I sweated a lot.  I think it was the most exercise I have had since February.  So we got to the top of council crest, and waited for one of my parents to come pick us up.

As we were sitting there waiting for a car that should have been there sooner than it was arriving to figures in profile come walking directly towards us.  One of them is walking very intently, and the profile looks really familiar.  And I realize it is my dearest friend x from LA, and then i realize the other person is my best friend from LA KM.  And i was so shocked, and amazed, and confused, and elated.  I turned to P and asked him something like “what they hell is going on?” and he said “oh, I was just the decoy” and I threw him to the ground with a yell of happy betrayal.  And then I tackled x to the ground in a hug, rolling around in the grass.  And then got up and tackled KM to the ground and rolled around.  And then got up and was so happy.

My brother comes tomorrow night.  And my dear friend LK is coming up from Santa Cruz in a totally separate plan.  I thought it was going to be a good weekend because I was going to have one friend in.  Now I have 4 plus my brother!  Amazing!

i am the happiest I have been in half a year.

note: this is the first post I have tagged “happy.”  Its a new tag.

Some of the ways people responded to me telling them about my cancer

I have observed that there are generally four ways in which people responded to learning about my cancer.  There are variations, and exceptions, and etc.  But these are some generalizations that seem to hold true most of the time.

1. What their mother told them to say.

which goes something like this: “I’m so sorry to hear about your diagnosis. If there is anything I can do, just let me know.”  Sometimes it includes a line about how their mother, uncle, friend has also survived some kind of cancer, though usually people tell you that in person.

I don’t hold it against them; it is a scary topic, and they are clearly scared.  they would rather that it had not entered into their circle of life, but having entered they have to acknowledge it.

People who say what their mother told them to say almost never visit, almost never offer any real help, and never really talk about it again.

2. Honest speechlessness

The most honest responses have been the ones where people say that they don’t know what to say.  Something like this: “i don’t know what to say. i’ve been thinking about you a lot this weekend, and i have no idea how to go about this, or what to say so i dont sound insensitive or cliche or weird. so i just wanted to tell you, “i’ve been thinking about you a lot this weekend”

3. The Medical Professional

This has only happened once or twice, but it comes exclusively from trained medical professionals, and it goes something like this: “Your experience with this disease is unique, and only you can know what this period of suffering has been like, but I wanted to reach out to you to express my respect and support for you.”

4. The Pragmatist

The pragmatist says one thing: “When can I come over and what can I bring.”

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.

Chemo day 3

Chemo day three was uneventful. I got myself psyched up to go, but by the time we were halfway there I was deflated again.  And then I realized I had forgotten to take my anti meds (lexapro and klonopin) that morning, so I felt defeated.  I shuffled in to the clinic, while my mom went back to the house for my anti meds.  They hooked me up, and the IV happened.  I shuffled out of there and crumpled into my seat in the car.

My friend AC came by that evening.  She is a friend from high school, who I fell somewhat out of touch with for a while, but have been back in touch with over the last two years.  My mom made dinner, we chatted, and then I went upstairs to rest for a bit.  Anna made her way up, after attempting to help with the dishes (my mom would not let her, LOL.)

We talked.  I asked her to hold my hand.  This is something I have found really comforting: holding people’s hands.

And I asked her to hold me.  I was a little nervous about that, but she understood and was glad to be able to.  It is so comforting to me to have people hold me, but it is something that I find really hard to ask for.  Both because I feel like I can only ask certain special people.  And b/c in the wrong context it could imply emotional and sexual things that are not meant to be implied. It helps that AC is gay, so there it is clear that my request was def not a come-on.  LOL.

She held me.  It was so nice.  I cried.  I find I can only cry when someone is holding me.

Before I started the anti drugs I was crying all the time.  I would sit down on the subway, and start crying hysterically while some poor 12 year old girl stared at me with compassion and curiosity, and her mother tried to not to look.

Now, the anti drugs keep me from crying.  The lexapro makes it so i can’t cry. The klonopin makes it so i dont care that i cant cry.

Though my doses are low, I think.  10mg of lexapro and .25 & .5mg of klonopin.  At least that is what a nurse said today when we were talking about adding back in some Ambien.

Anyway, I cried, AC held me, and we talked about everything that was going on.  I hadn’t really told her the story, so I did.  I showed her my scars.  We talked about how it was changing me.

Being held was so wonderful. It is the thing that I want the most.  I think that it is a major absence in Cancer care.  They have massage, and accupuncture, and complementary care, and nutrition.  But no holding.  Can you call it Cancer Cuddle Care?  I know, it sounds jokey, but I am completely serious.

The problem is that there are undertones to it. Our society needs safe boundaries for anyone to touch anyone else.  And people would have to get certified in Cuddling.  MPC: Masters in Professional Cuddling?

At some point after I broke up with K, and before started seeing O, I desperately wanted to be held. In a non-sexual way. I went through a laundry list of everyone in New York I could ask to do it, and decided they would either be freaked out by it, or read it as a sexual invitation (and accept).  I seriously considered hiring a call girl to come and hold me for an hour.  No sex, just holding.  I parsed the listings on CL, and realized that wasn’t going to work – they were either cracked out or sexed up.  There were no peaceful, caring, call girls on CL.  LOL.  But it is kind of indicative of how much I wanted to be held.  And it was also kind of a low point.