Tag: tired

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.

Weekend 1, in bed

I spent most of today in bed.  Total fatigue.  I lost my appetite too.  I guess that will mark the beginning of the chemo negative 15.  Which is the opposite of the freshman 15.

I weighed in at 201.5 this week.  I haven’t crossed 200 since I was a ski racer (2nd mention in less than a week!) and then it was all muscle.  Right now, it is *not* all muscle.  LOL.  It is the result of lying in bed for 6 weeks recovering from surgeries.

And it is also the constipation.  All these drugs they give you stop up the tubes.  Lets just say I’m full of shit right now…

I was lying in my parents glass room as the sun went down listening to Bach’s Cello Suite, regretting that I didn’t even want chocolate, and realized what I really wanted was a milkshake.  So off we go to Ben and Jerry’s. Maybe I’ll even get some pleasure out of this.

Chemo Day 4

Today is Friday. I didn’t have Physical Therapy or Massage Therapy this morning, so I slept in.  Until Noon.  And I’m still sleepy, but I have to get myself ready for chemo.

Yesterday was the day I got tired

To quote the literature the side effects for the first and/or second week are “Flu-like syndrome, consisting of fever, chills, malaise and myalgias… This is usually dose-related and appears early in therapy.”  Been there, done that.  My fever is down, my chills are going away, i’m still a little achy.  But now I’m tired.  Really tired.

Again, the literature: “Unlike fever, fatigue does not decrease over time; in fact, it may persist and even intensify as therapy continues. Physical or mental fatigue accompanied by cognitive deficits may occur. Other long-term concerns for patients receiving interferon therapy are fatigue, confusion and depression. This fatigue may be dose limiting and is actually very difficult to manage. Because the peak action of the drug occurs 3–12 hours following administration and its half-life is two hours, the patient should be advised to take the drug in the evening. Patients should also be instructed to pace their activities.”

The nurses, and Bob (the guy from day two) kept saying two things: drink more water, and get more exercise.  The more I exercise the more I energy I have.  And obviously, the converse applies too.  This make sense, though is easier said than done.

I spent most of yesterday sleepwalking.

I went for massage, which was wonderful, and relaxing.  So relaxing I fell asleep on the massage table.  I have never done that before.  I left there somewhere inbetween a trance and asleep on my feet.  I came home and checked my email. Closed my computer, and then fell asleep in a fetal position with my face on top of it. The laptop was still warm, and I guess that was comforting, or at least made me want to sleep.  And I fell asleep in the chemo chair.  I put on “Good Night… Music to Sleep by” that O had uploaded for me. I pulled out the leg rest, pushed back the seat back, and immediately fell asleep.  I woke up right as the Interferon infusion was finishing.

I went to the bathroom with the IV pole.  That was kind of weird.  But I got tripped up by all the long tubes, and stepped on one.  When I came out I noticed that there was blood running up the tubes for three feet.  I was kind of amazed, but I didn’t panic.  I just waived for my nurse Laurie, and she came and helped me back to my chair, and flushed it out of the tubes.  The interferon had just finished a couple of minutes earlier; my timing was perfect.  And Laurie was able to save the IV too.

When I got home, all I wanted to do was sleep. My dad dragged me out for a walk.  I knew it was the right thing to do, but I didn’t want to do it.  I went anyway.  I was really slow.  It did feel good, though.  He started in on this lecture about how I needed to exercise to get more energy, etc.  I cut him off.  I told him to stop lecturing.  I told him I knew he was right, but that I couldn’t deal with the lecturing.  I guess it was also that it seemed like such a clear sign that I was really in deep, which scared me.  And also that I had already been home too long b/c my parents were lecturing to me.

When I came back from the walk KT came over and we watched a movie.  He brought me a jar of origami cranes from his family.  It was really touching.  I have folded them before for people who were sick.  But never been given them.  While its not exactly a first that I had ever hoped for, considering I am already sick I am very glad to have the cranes.

We walked a mile last night.  Today when I woke up my calves ached worse than they have ached in memory.  It feels like I ran 10 miles hard.

My doctor pushed back the chemo treatment by two weeks becuase the incisions from the previous surgeries were not healing on schedule.  Apprently Interferon stops or slows all other normal healing processes.  In order to heal one part of my body another part has to suffer.

And yet, in order to keep my energy up, I have to keep walking.

Which one’s gonna give first?

Today was also the day I stopped being able to reply to all of my email.

Off to Chemo.  I get my IV out today, and a weekend break.