Tag: side effects

Interferon reboot: day 11 or day one again

It wasn’t as bad as the first day for sure, but I did have the chills/fever pattern. I was so worried about my liver function being low enough, I didn’t take any preventative Tylenol (as I had been the first two weeks), so I immediately felt the effects even as I was getting up from the infusion chair. And definitely on the way home in the car.

When I got home I took some Tylenol and Advil, and crawled into bed with all the covers and the heating pad. My muscles were on the threshold of contracting and doing the chills/shake thing that Bob told me about. But I didn’t go into shakes. I hugged the heating pad around my chest, slept off the chill for an hour and a half, and woke up sweating with a mild fever feeling. And hungry.

Following my Naturopath’s advice, I ate a lot, exercised a bit (15 minute walk), and am about to go meditate. I feel much more in control mentally. And, of course, I am control minded, shall we say. (Appending the work “freak” just seems unsavory in this context…)

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.

anticipatory despondency (sp?)

ive been totally despondent all day.  i have no energy, and no appetite.  its like i’ve already restarted the Interferon.  Like this is some kind of psychosomatic preview.  I have shuffled around the house trying to figure out what i can bare eating.

i cried hard today.  for the first time in a long time.

i realized that i’ve been here in portland for a month.  time just slips by when you are sick.  such a strange thing.  i’ve never experienced this until the last 6 months.  Its been six months!  half a year already.  that is so amazing.  so awful (& awe-ful.)

writing it down helps get it out and away.

my parents dont know what to do w/ me.  they keep suggesting these things to do.  go to Multnomah Falls.  go for a bike ride.  go for a walk.  but i feel so awful.  i know that getting out and doing something will probably make me feel better.  but the thought of it also makes me totally revolted.  what a mess

its going to suck again, but i can’t wait for the Interferon on monday, so i can just get this over with

my mom brought me some chicken soup, which seems to be the only thing i can eat when i get like this.  mom’s homemade chicken soup.  so cliche.  but it works.  feeling a little bit better.

i can’t wait to be done with this and back in my normal life.

ADDENDUM

(photo CC-BY-SA from Flickr by 80sAustin)

I spent an hour+ meditating, which helped.  I don’t really understand why it works, but it does.  It calms me down.  Gives me a structure to feel my emotions, cry where needed, etc.

Then, as per O’s suggestion (re: my observation) I took the novelty approach, and walked somewhere I had never walked before.  Kind of.  I walked down the Marquam Trail towards downtown.  We used to walk down this trail when I was little, and I used to run it in high school, but I haven’t walked it in at least 10 years.  The trees were so huge…  It was amazing to be in the woods right in the middle of the city.  I grew up in it, but I clearly had forgotten.  It is nothing like Central or Prospect park, which are so manicured.  And also so full of people.  I didn’t see anyone the whole time.  Though I heard a little brook gurgle.  And lots of birds.

When i got to the bottom, I called my mother for a ride back up the hill.

Walking down was hard, physically.  Which was emotionally invigorating.  But also broke me down enough that I had to stop several times to cry.  I wonder if I am reverting to the state I was in when I first found out and all I did was cry.  I would sit down on the subway, and just start crying.  I hope not.  At least I can cound on the Interferon to blunt all emotion.   I know, I know, that is a totally fucked up concept.

A brief return to un-drugged-ness

my liver function was too high, so i am not getting drugs this week.  this was a kind of a let down.  (i am drinking a detox tea to help my liver get ready for its test on monday)

the unexpected silver lining is that i get to feel normal again for the week.

i have an appetite, some energy, and my sense of humor back.

up to this point, i have had absolutely zero appetite, been sleeping 14-16hrs a day, and yawning constantly.  and kind of emotionally ‘flat.’  not that much pizzaz, shall we say. (which is to say, dull and emotionless…)

i started to feel it on tuesday, but it took until wednesday for my appetite to really come back.  around dinnertime i told my mom that i wanted to go out for dinner.  like, i wanted to go out somewhere nice, joking that i only had another five days of enjoying food, before the drugs started again.  she laughed and asked where, and I mentioned this one restaurant Higgins that I had never been to.  turns out they had a gift certificate that had been sitting around for a year, and she made reservations.

i also went for a bike ride with my dad.  just three miles around the fairmount loop.

and i drove the car over to my friend KT’s studio.  first car driving this trip, which is the same as saying first car driving since last thanksgiving (9 months?).  At thanksgiving I scraped the front end of my dad’s car in a parking garage.

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.

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.

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.