Still sick

I’m still really sick.  I’m better than I was before, but I am still dizzy and coughing up chunks.  And I’ve got sores on the inside of my mouth again.  I’m on so many drugs right now…  but it doesn’t seem to be getting better, just masking the symptoms.  I have to go in to the doctor tomorrow for bloodwork.  Something is clearly wrong, I just hope it isn’t really bad.  Hopefully it isn’t.

Bad Cold, Infection or Immuno-Supressed?

My cold in the mountains just kept getting worse.  I was burning through kleenex and cough drops, and had lost my voice completely.  I injected my IFN, and in a panicked moment after a sleepless night of chills and with an excruciatingly painful sore throat I decided to fly home a day early.  I made some frantic phone calls to the front desk, the airport shuttle and and the airline.  I made the decision yesterday at 6am, and was on the shuttle to the airport at 730.

By the time I got home it was even worse.  My Dad called and insisted I call my primary care physician and get some antibiotics.  The Dr. on call (it was 9pm on Friday) at first was hesitant to proscribe anything, because he was concerned that I might be immuno-surpressed from the IFN.  I haven’t had any bloodwork in over a month, so I couldn’t tell him for sure.  In the end he wrote for antibiotics and some codeine cough syrup.

The codeine helped immediately, and it seems like the antibiotics are helping today.  I’m feeling better.  Still up and down.  Throat still super painful swallowing.  Yesterday I felt so bad that anything feels better.

I definitely need to go see the dr next week.

The New “Normal”

About 10 days ago I had a pretty important conversation with my naturopath.  It had two foci: my new Normal state, and confronting my fears about feeling out of control.

He pointed out that over the last 7 months (it is now 7…) my emotional and physical baseline for what was “normal” has fluctuated wildly.  And I don’t really remember all of these discrete moments.  All I remember is maybe the last week. The here and now.  Which is always not quite what I once was able to do.  But the point was that I am doing so much better than I was after the surgery or during the IV IFN in Portland. And I have to accept that things have changed and that I have a new standard of “normal.”

A lot of acceptance that has to happen during this year. Its okay to be a new normal.  My new normal changes.  It is better than it was a month or two ago, but it is *not* my old normal.  It will keep oscillating a bit.  But hopefully it will stay high.

The other thing we talked about was my anxiety that “i can’t take care of my life”.  The thought and the fear spin out of control.  And attaches itself to all kinds of other toughts.

But the fact is, i can take care of myself.  Mostly at least.  I have to look at these things specifically.  And really ask if they are true.  Its not a pep talk.  its facts.  i’m doing these things.  i can do this.

If i call myself out on a *specific* fear (e.g. that I can’t make myself dinner, that i can’t do creative work, that i can’t go to the grocery story), i see its not true, or i see it is true (and i do something about it – i ask for help).  take it out of mental torture.  look through it and see the truth, or accept it and figure out a way around it.  otherwise it will eat me.  i eat it, or it eats me.

i need to write down a journal of stressful thoughts.  and then question them.  and they’ll loose my power over me.

i will bring the darkness out into the light and see where the dust settles.  and then from there, i can figure out how to make sure i’m supported in terms of the mental down.

so to start, here is a graph of my changing normal.  from december 06, when i was having a rough time, feb when i was diagnosed, through the surgeries, and IFN treatments.

Sick in the Mountains

I’m at a conference in Banff, Canada.  I gave my presentation yesterday.  I’m feeling pretty sick today

I had the weirdest rough night.  i think im getting a cold.  My room is really too hot, but I can’t control it because there is only one window and it is 12 inches square.  Really weird design.

I injected last night.  and crashed to sleep.  woke up ~5hrs later totally out of it.  this seems to be a new trend in the injections: waking up 5 hrs later.  I was really out of it.  the wildest part is that i wake up and go to the bathroom and was so out of it i didn’t lift the toilet seat cover! and peed onto the closed toilet!!!

i mean i had a quick reaction time and only splashed a little bit on the seat. and kinda threw a towel on it and the floor. and washed off my legs.  and was back asleep immediately.  but it was really surreal.  to be that out of it.

and then i woke up later with chills. haven’t had them for weeks. i think the altitude is making it worse. supposedly ppl only drink half as much up here at alititude.  so it must affect all drugs?

i slept through my alarm, but i pulled myself out of bed to catch breakfast right befor it closed.  food is in this big cafeteria.  but no one was there.  they had all gone off to their conferencey things.  i sat in the farthest scenic corner and struggled to eat my food.  I’m having trouble with food again.  I have no appetite, and it is not appealing.

but also it is the cafeteria effect. i dont know how much to eat. i have to point of reference: these are not my bowls. i dont know how much cereal i’m putting in. i didn’t prepare the food so i have no idea what size portion i am putting onto my plate.  because my own hunger is unreliable, i’ve been relying on measurement to know how much i need to eat.  i’ve figured out routines.  but here, i have no frame of reference.  probably the best were bean quesadillas. i mean they were shit quesas, but it was plain and filling. and i knew how much i was eating and how much i would want!  there was a standardized quantity.  totally disorienting.

CT scan pix

I had to have my second CT scan on Friday.  I get CT scans every 3 months, and MRIs of my brain every 6 months.  I have do the CT scan “with contrast” which means I have to drink this nasty glue-like “smoothie” that tastes awful, and feels pretty bad.  Totally blows out my G.I. system.

Cat Scan Smoothie

The tech who does the CT scans has given me two of the best IVs.  The first time, I didn’t even feel it.  This time, I barely felt it.  He cuts off the finger of his glove so he can feel the vein better.  The first time he did it in a really dramatic/showy way, putting the glove in his mouth, and biting down on it, stretching it out, and snipping it. This time, he does it a little bit more practically, but still fun and cool.  I feel like I wrote about this before…



Finger on pulse for IV

Saying “I Love You”

Since the diagnosis i feel like i have an increased capacity to love people, and for people to love me.  or, put another way, i’m more likely to tell people i love them, and they to tell me.  people whom i very close to (but never said it), but also people whom this ordeal brought me closer to.

I don’t think it is the fear that i might not get the chance to say it b/c i might die, but rather that the possibility that i may die spurs me to do things I really wanted to do anyway.  its not that the diagnosis has me backed into a corner, but rather that it has become an opportunity to take advantage of.

I guess I became much more comfortable with the idea of loving platonically in the last few years.  I’m not sure when it happened, but it did.  I became much more comfortable with saying it, even to my parents.  I mean, of course, I love my parents, but I think that in the last few years something changed about the way I related to the phrase that allowed me to really mean it.  Or to recognize that emotion as love, though a different kind of love than romantic love.

So I got more used to saying it, and the idea of it.

Correspondingly, my cancer caused my friends to tell me they loved me.  I could speculate on causes: that it was the fear that I might die and they might never be able to tell me, or that the *realness* of the cancer allowed them to break out of their fear, or soomething else equally speculative.  But I will simply say that it has happened, and it is comforting.

Feeling like crap

My mouth sores are mostly gone, but now I can’t swallow without pain on my left side of my throat.  I called the Dr, and these are not conventional side effects from the IFN. I was told to treat it like a cold, and if it is not gone in a couple of days, to call back for an appointment.

I’m queasy.  I’m wearing my ice vest inside my appartment with the A/C on.  I need to eat more food.  And I have to shoot up tonight.

I remember what AW said to me at one point:  “You will have good days, and you will have bad days.  And you just have to accept that somedays the best you can do is to lie in bed and cry.”  We’ll I haven’t cried yet today, though maybe that would be a satisfying release.  I think I’ll go eat some watermelon instead.  And then lie in bed.