Month: June 2008

Liver Function Too High

over here, i had a small setback.  my liver function test was too high. Last week it was 160, this week it was 317, “normal” is 10-40, but on Interferon it is kosher to go up to 200.  so they gave me the IV for the fluid, but are holding me for a week for the Interferon.  i have to wait a week then if my liver function is back in the acceptable range i will continue.  i have been told this is is quite common.  so i’m not worried.  i was hoping that i would be done sooner than later, but that is hopefully all this means.

stopping in the middle or modifying in some way is more normal than not.  my understanding is that it does not compromise effectiveness.  and when i made my ticket, they made me budget in an extra week “in case.”

So now the weird thing is that I am maybe going to feel okay this week.  I say maybe, b/c who knows, as my weekends were worse than my weeks.  That said, I do feel better this evening than I have for a while.

Sadly, it will probably make going back next Monday even harder.

104, but thankfully that’s not my fever

it was so hot here in portland this weekend.  104 degrees yesterday.  something a little less today, but with nasty humidity.  If feels like a rainforest.

i keep having to lie down with an icepack on my chest.  a big icepack.  it takes the edge off for a bit, but then i’m hot and sweating again.   my mouth is all parched and cottonmouthey.  no matter how much water i drink.

and this is *with* air conditioning.  i can’t even imagine what this would be like in nyc with my wall AC.  wow.

Halfway there

I finished week two.  I always think of these kinds of things in terms of running a mile.  Four laps around the track.  I just finished the second lap.  Fractions help make things more understandable for me.

I managed to keep the IV for the whole week again.

But today, Saturday, I feel kinda terrible.  This happened last week too.  The weekend is supposed to be a slight reprieve, but I seem to feel worse.

Bob was in for IV fluids again.  He and the other woman who started at the same time as me were chatting.  Bob asked me how bad my chills had gotten.  When I told him I didn’t get any, just got really cold he was kinda shocked.  I asked him, and the other woman who started at the same time as me if they did; she said twice.  Bob nodded, as if to imply he got them at least twice.  These are the kind of chills where you couldn’t hold onto anything, where your body just shakes.  Boy am I glad I missed out on that.

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.

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 6

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.

Appointments Galore

My Dermatologist made me an appointment with a MOHS surgeon that following Monday.  SM basically insisted that she come with me.  I thought I didn’t need it, but boy was I glad she was there.

This whole period was full of accelerated learning, and radical changes in my own self image.  From fit to sick.

February 25th, 2008

I went to the dr just now. Just consultation. I go back thurs for a Narrow Margin Excision, where he will remove the remaining bits of The growth. Next Tuesday I go up to Columbia to a different Dr, for a consultation about next steps.  My understanding is he will probably recommend a Wide Margin Excision and a Sentinel Lymph Node biopsy. They will both happen in the same procedure. Not sure when that will happen.

Will know more next Tuesday.  In the meantime, I’m feeling okay.  The new info doesn’t really calm me down that much, but it doesn’t freak me out further.

The other thing I learned today is that Lymph Node biopsy is a euphemism for extraction. Because they are so small, they basically have to remove it to get a sample.  They used to remove all of them, but b/c of some side effects, they now only remove the sentinel node (the first one)

The key is still whether it has spread to the lymph nodes.  The dr said that all things considered, he doesn’t expect it there, but he thinks the dr at Columbia will recommend checking just to be sure.

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.