Tag: other people’s stories

Just how hot the subway ride is

Subway platforms have been the bane of my return to NYC.  They are so hot.  They compelled me to go get the ice vest.  Today, the NYTimes writes on the heat on the platform:

This week, I bought a thermometer, hopped on the F, and rode back to Second Avenue, where the temperature on the platforms ranged from 97 all the way up to 101 degrees — all while it was only a relatively mild 86 degrees above ground.

The thing missing from the story is that it is always really humid down there.  Probably from all the sweat evaporating off of the heat struck riders standing around waiting for the next train to arrive.

Day 19: Are we there yet?

Almost done.  Almost done.  Almost done.

Today was the penultimate day.  I should have geeked out yesterday and called it the antepenultimate day.  Oh, this is what my English Literature degree comes to.

Yesterday, the antepenultimate day, I overheard one of the nurses arranging for hospice care for a patient with pancreatic cancer.  She used the word “nonresectable” which I think means it is inoperable.  My grandmother died from pancreatic cancer.  Hearing the word “hospice” was scary, but also reminded me how well I am doing.  How healthy I feel.  How far I am from giving in and going under.

Today I gave all the nurses cookies (that my brother made) and the URL to this blog.  I gave it to my massage/healer person too.  While it was happening, I wanted it to be private from them, but now that I am leaving, I want them to see it.  Ah… control.

I’m starting to feel like I’m already transitioning back to NYC.  I made a haircut appointment (my hair is wildly out of control.)  And I made an appointment with my NYC oncologist so I can learn how to do the self injection pen.

Wait, did you catch that… my NYC oncologist.  I’m so bi-coastal I have two oncologists…  LOL.

Day 17: Hi Fives from the Naturopath

I was talking with my naturopath today, and right after he told me how well he thought I was doing, he reminded me how difficult what I have been through was.  reiterating that no one knows how hard it has been but me; not him (who had cancer at 31), not my mother, who has had to watch, etc.

A year ago my ex girlfriend went from kinda-sad to severely-clinically-depressed overnight.  I’ll skip the dramatic in-the-middle-of-the-night catalyst event, as that was too big and messy for this analogy.  The point is I didn’t get it.  I didn’t understand what she was going through.  I had never been clinically depressed.  I did not know her experience.

The breaking point with my ex was when she called me in the middle of the afternoon when I was at the studio, demanding (there really isn’t any other word) that I come home and make her some chicken.

This i understand now: when you are sick, and have no appetite, and all of the sudden you want something, that thing becomes the most important thing in the world.

This I understand now: when you are sick, and you cannot get something for yourself you feel helpless,  When that illness is psychological, you feel doubly helpless.  When someone does not attend to you, you feel triply bad.

The argument unfolded without these two kernels of knowledge that my cancer has given me.  The highly condensed version of argument went something like this:

me: Can’t you just order some chicken from the place on the corner.
her: If you can’t come take care of me, I will find someone or go somewhere where people will take care of me.
me: (silence) (sigh) okay, I need you to do one thing
her: (some shouting about how she is sick, and she can’t do anything)
me: Take the chicken out of the freezer.

Then I took off on my bike, leaving my assistants at the studio.  That bike ride was the one where I intentionally hit the guy in the suit on the Brooklyn Bridge.  This is the only time I’ve intentionally hit a pedestrian.  He was in the bike lane, walking towards me.  He looked up at me, made eye contact, then went back to using his Blackberry.  It all happened at the threshold of conscious decisions: I took two hard pulls on my pedals, and subtly dropped my right shoulder and clocked him.   Hard.  I heard his blackberry smack to the deck and skittered off in a freefall into the East River (Its okay, the company probably paid for it.)  I didn’t look back to see if he was on the ground.  I wasn’t.  And I had chicken to cook.

The bridge shouldering is both one of my favorite stories to tell, and one of the lowest things I have done.  Funny that.

But the real point of this whole story is the the other thing I understand now that I did not then:  no one person can take care of someone who is sick.  It is just not possible.  It is too much work.  It is too emotionally tiring.  It takes a team.  It takes a family, and I mean that in the biggest sense of the word.

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.

becoming a melanoma expert

one of my colleagues called me today.  i talked to him for a while.  just chatting about the situation.  but also, an acquaintance/friend of his was just diagnosed with Stage III Melanoma (what I have).  but there are complications — something in the intestines that is (maybe) not the melanoma, it is something else.  he’s having blood in in his stool; i think it sounded like he had noticed something a while ago, but hadn’t gone until the blood showed up.  apparently the doctor said something like ‘i wish you had come six months ago.’

hearing that story makes me so glad i reacted in the way i did.  i swear, i wonder how long it would have been until i found it, if i hadn’t forgotten to trim my toenails, and if it wasn’t so dry in my apt in the winter, i wouldn’t have scratched the back of my dry dry calfs, and i wouldn’t have caught my toe on the lesion and yelped, and looked down to discover that new mole.

actually, i know when i would have seen it.  K saw it and asked what it was.  I told her i had gone to the dermatologist, and he said it was either a blood blister and going to go away in four weeks, or to come back to have it removed.  so it would have been maybe six weeks later.

my primary care physician (whom i totally have a crush on) called me when she found out (via doctors reports.)  she was pretty amazed/shocked herself.  she said “you know, you saved your own life by finding it and acting on it.” and she is not the kind of person to make exaggerations.

anyway, it was great to talk to my colleague today.  i enjoyed talking with him.  but it was a little weird being the melanoma expert.  i mean that is largely why he called.  he wanted to give his acquaintance/friend some info from my experience, and to get my doctor’s info.  its not something i really *want* to be an expert on.

also, it was a bit of pretend-normal.  talking to him, i got up for it.  i felt better talking to him.  i was concentrating.  using all my energy to be lively.  trying to be upbeat.  charming.  make jokes.  laugh at his jokes.  etc.  in the process i make it seems like i am doing better than i am.  partly b/c for that moment i *am* doing better.  but also b/c i don’t want to appear not well.  it is, to a certain degree, about appearances.

pretend-normal.  tomorrow i restart the Interferon.  back to life in the slow lane.  no appetite, no energy, no motivation.  i have been really anxious.  i took extra anxiety medication this morning.  i don’t know if it helped.  i rode my bicycle hard.  i think that helped.  i was breathing really hard; the kind where you get a headache in your ears.  that is such a sign that you are working out hard.  i have not worked out that hard in four months?  it sure feels good.  though who knows when i’ll be able to do it again.

130 tomorrow is bloodwork.  hopefully i pass, and get the drugs.

What’s in a word OR Eating the Cancer

Yesterday I went to a Naturopathic Doctor who works at the Complementary Medicine center at the Cancer hospital I’m getting treatment at.  My mother pushed for it.  I didn’t really care, though felt like I should do my due dilligence.  My father was not consulted.

There are a few strong memories I have about my father when I was young, especially discussing medicine.

My favorite was when my father was drinking a coca-cola while driving, and in all earnestness I told him not to drink and drive.  I really thought that was what all those advertisements were telling me.  He thought that was a hoot.  I’m smiling writing this.

I also remember asking him what a “shrink” was, and he explained that a psychologist was someone who talked to people about their emotions, that a psychiatrist was someone who went to medical school and proscribed drugs for people, and a psychoanalyst was for people who believed in some out of fashion ideas that someone named Freud believed in.  He didn’t tell me what those ideas were, for fear I would kill him and run off w/ mom (LOL); I didn’t hear about them until we read Oedipus Tyrannos in 9th grade and our teacher had to explain to our dumbfounded class of 15 year olds that this Freud guy really did think everyone wanted to off their dad to get their mom.  And some other stuff…

Anyway, the real story here is when I asked him what a Naturopath was.  Or maybe I asked what a Chiropractor was.  Either way, the answer was pretty definitive: A Dentist is someone who did not get into Medical School, a Podiatrist is someone who did not get into Dental Schoool, a Chiropractor is someone who did not get into Podiatry school, and a Naturopath…  don’t get me started.  It was something like that.  So typical of an MD.  To be fair, I think my father has mellowed out a little bit about these issues over the past 20 years, but he is still an MD.

So we went to see the Naturopath yesterday morning.  His only availability was at 8:30.  One of the first things he said was “you look shell shocked.”  True, true.  He was kind of funny, and personable.  He asked me to give him the history of my cancer.  Then he told me about his experience with cancer: he was a 32 year old filmmaker and he was diagnosed with testicular cancer.  His experience beating cancer and dealing with the MD world inspired him to go back and become a Naturopathic Doctor to help people make it through cancer treatment.

He gave me a couple of supplements: some “pro-biotic” that replaces all the good stuff in my digestive tract that the drugs remove, so I can have “good poops” as he said. (grinning.)  And he gave me some flower essence drops that supposedly help reduce anxiety.

But what he really gave me were a couple of ideas.  Pointing at his head, he said “Its all up here.  Either you eat the Cancer or it eats you.”  He said several variations of that idea.

What really made it click was when he said “You know, if it makes it easier for you to think about it this way, Interferon isn’t really chemo; it is an immune system stimulant.  It works on completely different principles.”

So here we were again, back at the is it or isn’t it chemo.  But this time I found that thinking of it as NOT chemo made it something I could digest and move on.  I’ve been feeling better since then; emotionally and physically.  Maybe it is just that point in the treatment where I have built up enough tolerance for the drug that I can deal.  Maybe I am beginning to learn how to eat the cancer.

Chemo report day 2

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.