I was wrong

Well, after I updated yesterday I realized I was wrong. I finally listened to the 8 voicemails I got during surgery and one was from the nurse that runs the study. They can’t start chemo until I get the PET Scan. So I called first thing this morning and they moved me up to this afternoon. Which is great, but means I have to fast again today. The appointment isn’t until 2:30 this afternoon. I can drink water all day though. Yesterday was extra rough because the night before I had been puking, then I had to fast for surgery and stop drinking water before 10:00. I was so dehydrated by the time I got there when they had me pee in a cup it was almost orange. They put in two liters of fluid and I still never had to pee. My throat is super hoarse today which I’m sure if from the dehydration. So I will do my best to drink lots of water today.

Also, I’m not sure if it’s from all the fasting and dehydration, but my port HURTS. I’ve been taking hydrocodone constantly (one pill every 3 hours so it never wears off) and I’m barely able to move my arm. As long as I keep it tight against my body it is okay. I tried to sleep in bed last night but ended up in the recliner with a lot of help from my husband. He was great – set his alarm for every three hours all night to get up and make sure I took a pill and changed my ice packs all night for me. I imagine I’m getting my first taste of how much harder things are when I’m not eating, sleeping or keeping myself properly hydrated. Must do better.

Once the study person gets me all set up, the computer will tell her what group I’m in. In one of the groups, she would have to order the meds so I wouldn’t be able to start for 24 hours, the others could start immediately. So we’ll just have to see what the computer spits out. I should start by Monday at the latest.

I have to carry an identifier around about the card and they gave me a bracelet to wear – it looks like a live strong bracelet but it’s gray and purple and says the name of the port on it. I’m also supposed to put an identifier on my keychain. I don’t know how many people won’t know what this port is, but that seems like a bit of overkill. It’s called a Bard Power Port so you can check it out if you would like to. It looks kind of like a doorbell but of course you can’t see it since it’s under my skin. It sticks out a decent bit, but I’m guessing my shirt will cover it most of the time. Hopefully the pain will go away soon. I’ve still got the gauze over it – she said I have some internal stitches which will dissolve and then more steri strips on the outside. I’ve got a lot of those on right now. I should be super itchy in a couple more days. Between all the biopsies and the surgery, I really have a whole lot going on in the chest area. People need to give me some space right now. That’s a lot on a girl.

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4 Responses to I was wrong

  1. Leigh says:

    Glad that Eric is taking good care of you! Sorry that you feel sore and infringed upon. That can’t be fun. BTW…be on the lookout for a package from Georgia. Someone there loves you very much and put a little gift in the mail for you. Okay, I’ll go ahead and tell you that it’s me. I sent you a little gift-y.

  2. Christina Cullinane says:

    Jenn – the ID for your port is so that they know they can use it to full advantage for you… the port they put in is good… they build landmarks into the ports, but the more id the better… it will eliminate sticking your arms for things they can’t run through other ports like high powered contrast for your scans. Call the surgeon’s office to let them know what your pain level is if not improving. Protect your port and make sure that everyone is using good technique when accessing it (learn what that is for yourself)… wash hands, clean the skin and wait for it to dry, wear gloves – the basics… believe me, i’ve had to intervene a few times where people were not following the basics so don’t hesitate to tell them to wash hands and so on… explain to you what they need to do to access the port… make them engage you as an individual… its your body, still, really!

  3. Christina Cullinane says:

    Oh, and yes… hydrate, hydrate, hydrate… drink fluids til you can’t stand them anymore and then drink some more. It does help.

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