Maintenance phase begins

25 February 2013

So the first treatment side effects yesterday were awful.  I got my shots around 12ish and went to work.  I made it until 3:45 before I had to head home.  Somehow I thought this time around things wouldn’t be as bad.  Yeah, about that, I WAS WRONG!  The aches started first at around 3, I thought I could make it to the end of the day.  They proceeded to get worse so I headed home.  I made it in time to crawl in bed and fall asleep.  The freezing shivers started around 4:30 or 5, I really can’t remember.  All I know is that they seemed to last for-fucking-ever.  As soon as I would start to warm up, I’d have to get up and let Abby out or have to go to the bathroom.  I was actually looking forward to the fever to come in and save the day.  I have no idea when it started but when I finally took my temp, and wasn’t freezing anymore, it was 102.8.  Damn, that was at 7:08 last night?  It felt like midnight.  I texted my temp to my nurse, she said to ride it out with Tylinol. 

It should be said that this part of the side effects should only last a week or two, I hope.  I only had this for a week during the infusion phase so I hope the maintenance phase follows suit. Next up, rash?  God, I hope not!

The only good thing about this phase it that it takes a few hours for the side effects to hit.  I have more time to get stuff done before I’m down for the count.

Dr. Poklepovic reiterated, again, the importance of not suffering in silence.  I am to let him know if I start to feel down in the dumps and he will prescribe me happy drugs.  Hell, I already have 6 drugs sitting on the counter at home to counteract the side effects that can be controlled, how many am I supposed to ingest?  Yeesh!  Not to worry, I promised I’d let them know.  It isn’t as if the whole world can tell how I’m feeling by looking at me.  I do not have a poker face.

So I’m better this morning, but still feel achy.  Don’t worry all, I will get through this.  I will probably sleep through the first month or so before things start to settle down a bit.  Pray for Abby to get through this.  This can’t be fun for her.  I just keep telling myself, it is better than getting cancer again. 

27 February
Wednesday was better than Monday.  I didn't shiver for hours and the fever barely broke 100.  I was still achy but it was bearable.


01 March
Things are looking up!  I think being off of treatment for 2 weeks fooled my body into thinking I was done.  What a shock for me to start back up again.  Today was better than Wednesday.  Only minimal chills, no fever and very slight aches & pains.  I hope things continue in the same vein.


04 March
More of the same.  Chills & aches hit first, then eventually the fever came in to save the day.  Isn't it interesting that I look forward to the fever to hit so I'm not cold anymore? 


06 March
Thunder Snow!  Driving in to work this morning was weird.  My neighborhood had rain, 4 blocks later it was sleet, then before I got to the highway it was fat flakes of snow.  It snowed all day until I got the call to go in early for my shot.  Also got news that the staff at the hospital is looking for funding for me to do the shots at home.  That would be nice.  I could do the shots myself instead of going into the hospital every other day.  I could even take a vacation!  What a thought. 

Got some bad news when I went in for my shot today.  4 people in the high dose Ipilimumab arm have died on the treatment.  This makes me incredibly sad.  I had to read about what happened and sign a form indicating that I understood what happened and that I was still interested in continuing with treatment.  My heart goes out to the families of those patients.  While we all  understand the risks associated with a study, it still scares the shit out of me when I think back to the beginning and I was hoping for one of the Ipilimumab arms.  Someone is watching out for me!

Thinking healing thoughts...


A few photos from the end of my induction phase.  One o fmy nurses made me the sign.  I love these nurses.  They are amazing!