White Lily
What Fassbinder film is it? The one-armed
Man walks into a flower shop and says:
What flower expresses
Days go by
And they just keep going by endlessly
Pulling you
Into the future.
Days go by
Endlessly
Endlessly pulling you
Into the future.
And the florist says:
White Lily.
-Laurie Anderson
Too tired to write.
Chemo today was easy. And i’m doing okay w/ side effects. (None so far besides fatigue) I didn’t get as tired as I have been. Many yawns, but that is it. I find that eating helps me stay awake, and I have found a few things I can reliably eat. Salad, pasta salad, water, bread.
I’m getting good at showing up, getting plugged in, and then falling asleep while the IV fluids and Interferon drip into me. It does not scare me anymore.
They drew my blood and did the tests on it. My liver function is high, and my white blood cells are low, but this is expected. I’ve got 20% more to go before they have to cut the dose. But my immune system is close to being compromised. They used the word Neutropenic (http://en.wikipedia.org/wiki/Neutropenia). I’m not there yet, but that is the risk.
I kind of have a little crush on the nurse that does my chemo. Not a real crush. More like a nurse crush. Like a “You just stuck a needle in my arm” crush. Its tiny, and by saying it, I either risk killing it all together, or getting it blown out of proportion! LOL.
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.
I spent most of today in bed. Total fatigue. I lost my appetite too. I guess that will mark the beginning of the chemo negative 15. Which is the opposite of the freshman 15.
I weighed in at 201.5 this week. I haven’t crossed 200 since I was a ski racer (2nd mention in less than a week!) and then it was all muscle. Right now, it is *not* all muscle. LOL. It is the result of lying in bed for 6 weeks recovering from surgeries.
And it is also the constipation. All these drugs they give you stop up the tubes. Lets just say I’m full of shit right now…
I was lying in my parents glass room as the sun went down listening to Bach’s Cello Suite, regretting that I didn’t even want chocolate, and realized what I really wanted was a milkshake. So off we go to Ben and Jerry’s. Maybe I’ll even get some pleasure out of this.
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.
Today is Friday. I didn’t have Physical Therapy or Massage Therapy this morning, so I slept in. Until Noon. And I’m still sleepy, but I have to get myself ready for chemo.
Yesterday was the day I got tired
To quote the literature the side effects for the first and/or second week are “Flu-like syndrome, consisting of fever, chills, malaise and myalgias… This is usually dose-related and appears early in therapy.” Been there, done that. My fever is down, my chills are going away, i’m still a little achy. But now I’m tired. Really tired.
Again, the literature: “Unlike fever, fatigue does not decrease over time; in fact, it may persist and even intensify as therapy continues. Physical or mental fatigue accompanied by cognitive deficits may occur. Other long-term concerns for patients receiving interferon therapy are fatigue, confusion and depression. This fatigue may be dose limiting and is actually very difficult to manage. Because the peak action of the drug occurs 3–12 hours following administration and its half-life is two hours, the patient should be advised to take the drug in the evening. Patients should also be instructed to pace their activities.”
The nurses, and Bob (the guy from day two) kept saying two things: drink more water, and get more exercise. The more I exercise the more I energy I have. And obviously, the converse applies too. This make sense, though is easier said than done.
I spent most of yesterday sleepwalking.
I went for massage, which was wonderful, and relaxing. So relaxing I fell asleep on the massage table. I have never done that before. I left there somewhere inbetween a trance and asleep on my feet. I came home and checked my email. Closed my computer, and then fell asleep in a fetal position with my face on top of it. The laptop was still warm, and I guess that was comforting, or at least made me want to sleep. And I fell asleep in the chemo chair. I put on “Good Night… Music to Sleep by” that O had uploaded for me. I pulled out the leg rest, pushed back the seat back, and immediately fell asleep. I woke up right as the Interferon infusion was finishing.
I went to the bathroom with the IV pole. That was kind of weird. But I got tripped up by all the long tubes, and stepped on one. When I came out I noticed that there was blood running up the tubes for three feet. I was kind of amazed, but I didn’t panic. I just waived for my nurse Laurie, and she came and helped me back to my chair, and flushed it out of the tubes. The interferon had just finished a couple of minutes earlier; my timing was perfect. And Laurie was able to save the IV too.
When I got home, all I wanted to do was sleep. My dad dragged me out for a walk. I knew it was the right thing to do, but I didn’t want to do it. I went anyway. I was really slow. It did feel good, though. He started in on this lecture about how I needed to exercise to get more energy, etc. I cut him off. I told him to stop lecturing. I told him I knew he was right, but that I couldn’t deal with the lecturing. I guess it was also that it seemed like such a clear sign that I was really in deep, which scared me. And also that I had already been home too long b/c my parents were lecturing to me.
When I came back from the walk KT came over and we watched a movie. He brought me a jar of origami cranes from his family. It was really touching. I have folded them before for people who were sick. But never been given them. While its not exactly a first that I had ever hoped for, considering I am already sick I am very glad to have the cranes.
We walked a mile last night. Today when I woke up my calves ached worse than they have ached in memory. It feels like I ran 10 miles hard.
My doctor pushed back the chemo treatment by two weeks becuase the incisions from the previous surgeries were not healing on schedule. Apprently Interferon stops or slows all other normal healing processes. In order to heal one part of my body another part has to suffer.
And yet, in order to keep my energy up, I have to keep walking.
Which one’s gonna give first?
Today was also the day I stopped being able to reply to all of my email.
Off to Chemo. I get my IV out today, and a weekend break.
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.
It is wednesday at 1pm. I leave for my third chemo treatment in an hour. I feel like total shit.
Yesterday seemed like it was going well. I woke up feeling okay. Not 100%, but kind of like I had a hangover. I felt pretty okay going in to chemo.
While I was there I met a man named Bob who had finished the full Interferon sequence two months previous. He was in just to get IV fluids. He was still experiencing fatigue. He offered to answer questions. I asked him if it got better or worse, and he said that after the four weeks of high dose it pretty much stays the same. The first week is the worst. The fever and chills get better, but the fatigue builds through week four and doesn’t go away. I asked him if he had been able to go to work, and he paused for a bit, and said kinda: 3 to 4 days a week, for 5 hours a day. He said that by 2pm you are just done. Not physically tired, just done.
He remarked at how young I was. He was the next youngest, and he was mbe 50. Everyone else was in their 70s and above. The place was full, and loud. I was happy that I could meditate through it the way I did.
He also asked if I had a history of clinical depression. I told him that I didn’t, but that I had been put on prophylactic antidepressants by my Psychiatrist. He asked which, and I told him Lexapro. He noded, and said that is what he was on, and that it helped. Everyone asks about the depression factor. It must be serious.
Other than Bob, chemo was uneventful. We left and got home on time. I ate earlier than the day before. That helped a lot. I started to get a headache, as expected, but it wasn’t as bad as the day before. The headache built, but never peaked like it did the first day. My friend C came over, and we had a nice time hanging out. I haven’t seen him since Thanksgiving.
I felt so much better. I started to think this whole thing would be a piece of cake. right…
I curled up in bed and didn’t fall asleep. All night. I was restless, and nervous. I was afraid to take an Ambien on top of the Klonopin, so I didn’t. And so I didn’t sleep. As the night grew on and on, I tried music. I got up and then tried to go back to bed a second time. I even tried masturbating, b/c sometimes that release lets me sleep: I couldn’t even come b/c my left hand has the IV in it and it hurt too much to hold myself.
And plus, by that time I was getting cold. I didn’t really realize it happening, but I got cold. Really cold. By the time I realized it, I had the chills. I put on an extra blanket. But was still shivering. My dad came in at 630 to get me to take my next set of tylenol, but i was already wide awake. He seemed hurt that i hadn’t wakened him to put more blankets on me, but I didn’t even realize how cold I was. He went back to bed, and I put two more blankets on my bed.  Six total, I think. Mbe seven. Still cold, though slowly warming.
When my mom came in around 8pm with the dogs I finally was warm. I held one of the dogs for a moment, before she ran downstairs to go out for the morning pee. Then I finally fell asleep for two hrs.
I woke with a start at 10. Confused about where I was and what time it was. I knew I had to be somewhere, but couldn’t remember where and when. After jumping out of bed, I remembered I had physical therapy at 11.
Today I really am scared of the chemo. I was full of energy the last two days. Today I need to get my energy up. I feel like hell. Like the worst kind of hangover. No sleep.
Time to rest for the remaining 40 minutes before I have to go.
ADENDUM:
I leave in 5 minutes. I took a shower, changed my clothes, and pretended I was getting dressed for a sporting competition. A soccer match. Or a ski race. It worked. I’m amped up. I know I’m weak underneath, but I’m pumped on the surface. Ready for this. Ready right now. Tired, but ready.
Time to go.
my aunt (who has been doing chemo for two years for lung cancer) told me to “visualize building walls”
i went into this part of the hospital where they have a lot of big kinda-comfy chairs, they hook me up w/ an IV and put in 1 litre of saline solution. towards the end of that, they piggy-back on the Interferon. all told it takes about 3 hours. a lot of time
then i went home and waited for “it” to hit, whatever “it” was going to be. “it” ended up being headache, and really feverish joint aches. followed by chills, and then a nasty fever w/ sweats. it totally sucked around midnight – chills alternating w/ fever – sweated out my bed. but i feel today just kind of hungover. supposedly the chills drop off and the fatigue builds over time.
today’s thinking: i can do this
when i went in i did the breathing meditation i was working on w/ my massage/healer person. i did it to brian eno’s music for airports, which is probably my ‘desert island album.’ it is nothing but perfectly syncopated arrhythmical tape loops of pianos and other synths. and so calming. though some people cant stand it.
then i switched to the first half of the jack kornfield meditation for beginners cds that a fam friend gave me. i did the breathing meditation. and mindfulness. and then right when it ended and he rang a bell and i opened my eyes, the nurse was approaching to talk to me. timing = perfect.
she stopped by to tell me about the chemo drugs. the interferon. its interesting. in nyc they never used the word chemo. here they only use the word chemo. i can’t tell if it is some kind of technical/chemical differentiation, or a philosophical/emotional diff. like the nyc’ers are all about denial and pretending it isn’t what it is. and pdx is all about just calling it what it is. but isn’t that a flip for what i would expect?
she kept telling me how expensive the drugs were. each daily dosage is $9,000. insurance covers it. but $9K. crazy.
yesterday, about 3 hrs before i went in, something clicked. and all of a sudden i had no more anxiety. all of a sudden it was ‘game on’.  like i felt 3hrs before a big soccer match, or a ski race. i was prepared, calm, collected, and ready to kick ass. i was walking on the balls of my feet w/ a spring in my step. bring it on.
i used to be a competitive ski racer (in college.) skin-tight downhill suit. helmets. and very very fast descents down icy icy steep slopes. i was pretty good. i never won anything but considering i was racing against ppl who were ex-world cup racers and ex-olympians (25 year old romanians and czech olympians who came to obscure US colleges on skiing scholarships), it is understandable why i never won… LOL.
ski race pr0n attached below. this is mbe 10 yrs old. someone sent it to me about two weeks ago. first pic i have ever had of my skiing, really. many were taken, but none got to me. here it is 10 yrs later… its hard to tell b/c the shutter speed was so high, but i was prob doing about 45mph at that moment.
off i go for day two. it will be at 230 every day, for the next four weeks.
m
