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

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.

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.

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 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.