Tag: interferon

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.

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.

Life will be better in 11 months

O mentioned that she was imagining what my life was going to be like in 11 months when the drug treatment has become so routine, and then is over.

i think my life is going to feel so awesome and easy in 11 months

like:
i wont have to shoot up
i’ll have lots of energy
i will have made it through
i will have an appetite
i will eat anything i want
i wont have to take anymore anti depressants and anti anxiety drugs (which make it so I can’t orgasm)
i will be able to have all the orgasms i want
i will want to eat more than watermelon, smoothies and watermelon.  oh and frozen pizzas
oh, life will be better in 11 months
I hope.
PS I just addd the “hope” tag

I feel the sleepy undertow again

It is kind of amazing to feel the side effects of the Interferon coming on again.  Whereas before they were confusing, surprising, chaotic and alarming, now they are like the return of an old friend.

This morning I had my first “I don’t feel like eating anything in the whole world” feeling.

This evening I felt the sleepy undertow.  I lied down around 6pm, and felt like I could just go to sleep.  I felt like it was going to be so hard just to get myself up.  I had a friend coming for a walk at 630, so I forced myself to get up.

So all my old friends are back.  Fevers, Loss of Appetite, and Exhaustion.  Side effects make constant companions.

I will fight them, though.  I will fight them with water, food, exercise and meditation.

I sound rediculous, right?  I’m just reminding myself.  I guess I don’t really care what I sound like b/c I know it will work.

Feeling better this morning

i hope i’m not speaking too soon, but this morning i just feel like i am a little bit hungover.  like three glasses of wine hungover.  i slept through the night.  i shot up around 1am.  its 11am now.  i slept 9 hours.  if i had chills and fever i was able to sleep through them.

It was relatively cold outside (74 or so) so S proposed not using the AC last night, and just having lots of fans.  So it was in the high 70’s.  Maybe that helped.

Tired, achy, and sick feeling, but this round was a whole order of magnitude better than the first round.

Post Injection: Rough two days

The last 48 hrs have been pretty rough.  I woke up Tuesday feeling like had done a really hard workout, then drank the better part of a 12 pack.  My whole body ached, I had a pounding headache, i was nauseous, and I felt like it was all going to get worse if I moved.  But I moved.  I got up.  I slowly felt a little better.  But the headache never went away (despite some Codeine), and the chills and fevers came back in the evening.  I did manage to sleep last night, but again, woke up feeling like crap.  I felt better mid day.  This evening I’m panicking about the injection I have to give myself.  I’m scared.  I spent an hour on a park bench wearing my ice vest alternately trying to meditate and succeeding in crying.

Spoke Too Soon: really bad night

it seemed like it was going to be an easy round this time, but i spoke too soon. I went through a mild round of chills and fever, felt better, and went to sleep around 11, drugged and seemingly peaceful.

 

I woke at 130am with the worst chills I have had yet.  Much worse than the first night I started the much higher IV dosage. I tried to get warm with the heating pad and relax as best i could, but my muscles were on the threshold of spasming and going into shakes.  Shivering at the top of the stairs, I called S for help.

He turned the AC off, brought luke warm water, warmer sweatpants, a winter down blanket, arranged the heating pad, and held my hand until I/my body had calmed down enough that i was not shaking anymore.

Sometime later I realized I had started sweating. It is amazing how I can’t notice that liminal moment when I transition, I only notice once I am already overheated and feverish.  I pushed all of my warm stuff off and crawled out of bed.  I think S was there by the time i got out into the living room.  AC back on, ice packs on the chest, drinking cold water.

The fever was still going strong when S went to be around 3am.  I tried to get to sleep.  i took even more sleeping drugs.  my mind was racing, and my body was aching.  i tried to meditate.  i tried to do guided visualizations.  i listened to Music for Airports. and still I was sweating, and tossing and turning with no real chance of sleeping.  It reminded me of the second day of IV infusion, when I couldn’t sleep all night. 

As the sun started to come out, sometime before 6am, I thought I might try to sleep on the couch.  sometimes moving into a new bed helps me.  its like i think i’m starting the getting-to-sleep process over, with a clean slate.  i pulled off the cushions, brought out my pillow and sheet, set down my liter jar of water, and went to put away my ice pack.  coming back to the couch i forgot about the water, and kicked it over, spilling a liter of water on the floor and splashing it all over the sheet and cushions.  it was too much.  i just sat down on the wet couch and cried. 

it felt good to cry.  i was really frustrated.  and i couldn’t really express it.  and i haven’t cried in some time.  and the crying was maybe the thing that made me tired enough that no matter what, i was going to be able to sleep.

I finally slept around 7am.  I woke around 1030am. i feel like i got hit by a truck.  or maybe like i did a hard workout, then drank a six pack on an empty stomach.

what i don’t get is why there were two waves of chills/fever, why the second one was worse, and why the self injection seems to have such stronger side effects, at least on the first night.  I guess mainlining any drug is the best way to take it.  Maybe that or snorting it.  LOL.

so, my mind was racing the whole time.  i kept remembering things i needed to do.  and ideas i had had but had forgotten, and questions i had, and thoughts i wanted to remember.  so i wrote them down in the book O gave me.  in the dark.  my handwriting is bad enough when i can see what i am writing.  check out what it looks like when i can’t.  I think i will be able to decipher these runes.  I think so, but it will take an effort.

Insomniac Notes 1

Insomniac Notes 2

 

Self Injection Day 1: I learned how to shoot up!

The calm surrounding restarting the drugs evaporated about two hours before I had to head up there.  I started getting headachey and overheated.  I tried everything to make it go away (eating, drinking, pain killer.) it wouldn’t go away b/c it was psychosomatic.  This was happening a bit in PDX. My Dr there explained to me that it was a very well documented phenomenon that chemo/interferon patients get psychosomatic symptoms *before* they go to actually get the drug.  So chemo patients will start puking in the morning before they go to the hospital for chemo.  In my case, I got headaches, feverish and even more tired in the hour before I was going to leave for infusion.

My appointment was for 5pm.  I got there 15mins early.  But when I arrived at the office, it was like an episode from the twilight zone.  All the receptionists were different, they didn’t know the nurse practitioner I was there to see, they didn’t my Dr’s Physician’s Assistant, and they didn’t even know my doctors phone number. Apparently this office is used by different doctors each day.  Rather than have one set of receptionists and assistants, each doctor has their own set of receptionists and assistants.  I guess they just sit in a cubicle the rest of the time answering calls and scheduling appointments.

So I call up to the receptionist who is in her cubicle, and she says that she will page the nurse and send her down.  15 minutes later I call back, but it is 5:02 and the call goes straight to the message system.  The twilight zone receptionist leaves.  Doctors leave with their bags. You can see where this is going.  Knocking on doors I found someone who knew what I was talking about and who i was looking for.  He made some calls, and actually spoke to her: there was an emergency in the chemo clinic, but she would be down as soon as she could get there.  

About an hour passed.  I was starting to get more psychosomatically symptomatic.  Plus I was getting tired and hungry.  Right when I was really ready to walk out the door I decided to try the open-the-book-when-waiting-for-the-bus technique.  Right when you give up on the bus coming quickly, sit down and open up your book to read, the bus inevitably shows up before you finish the first page.  Its like Law of Nature.  So I announce that to S, who doesn’t quite get me, and I go turn on one of the computers in the waiting room.  They have two public computers to keep people from getting too bored.  And sure enough, right as the first little windows flag shows up in the boot cycle, the door opens and the nurse walks in.

After all that waiting, the injection was really easy.  I’m glad I got instruction, b/c I would have screwed some things up.  I would have pushed the needle in too far.  And not done it at the correct angle.  As is, I didn’t really do it at the right angle.

Pushing the needle in is painless.  As in, I couldn’t actually feel the needle enter my skin.  It was weird that way.  Injecting the IFN stung a bit.  I had to do it slowly.  I did the first half, then I did the rest.

After I did the injection I had this 5 minute spurt of energy, optimism, and other kinds of good feelings.  It was partly b/c it was over, and it was soooo much easier than I thought it would be.  But it was also probably partly chemical. I’m sure there were a lot of endorphins, or adrenaline or whatever that my brain pumped out when my brain groked that i *really* was about to stick a needle in me.  It was so weird to be looking down and think “I’m going to stick this needle into my stomach…”  and then to do exactly that.

Train ride sucked, but not that bad.  I got the headaches for real right as we turned the corner to the apt.  I got some chills, but not that bad.  I should transition to a mild fever shortly.  But overall, not so bad.  Not as bad as restarting.  Which is interesting because I am at the same dose that I was at for the second two weeks of IV, I just take it 3 times per week, rather than 5 times.  I guess the body doesn’t absorb as much when the IFN isn’t mainlined into the vein.

Calmly, I start my self-injection tomorrow

I start my self injection tomorrow.  Strangely i’m not nervous.  The last two times I started the drugs I was in a real panic.  The initial start had me panicking 2 weeks out.  I panicked for two days before the restart after I had to take a week off on a drug holiday.  But this time I am barely giving it a thought.  Maybe that means its denial.

The drugs have to be kept refrigerated. I have the drugs, and I have to keep them them cold on my trip up to Columbia Presbyterian.  I was looking around the house to find something to keep them insulated.  I thought of slipping it inside one of the ice pockets on my ice vest, but I’m afraid that it will actually freeze the drugs, which I have been told ruins them.  Or maybe it just breaks the needle.  So I settled on putting it into a metal coffee travel mug.  I was inspired by stories that I have been told of the pro cyclists around 10 years ago who were all doping, and were toting around their needles inside of metal water bottles.  Apparently the needles would clink back and forth making noise.  And everyone was doing it.  So everyone had a clinking metal water bottle.  So off I go tomorrow with my clinking coffee mug.