My First DISCO DAY! in These Foolish Things

March 26, 2021, 3:18 p.m.
|
Public

Ya know, if we’re gonna have firsts in this fight, we’re gonna make them sound EXCITING!

Today is disconnect day, or DISCO DAY, as I’ve seen a blogger call it. It’s the day I get Foxy, my 48-hour infusion ball of something called “5FU” disconnected from my port. Woo hoo! I will be free for a week and a half!

The thing I’m nervous about is feeling the yucks. The fab infusion nurse told me that the yuck day is usually the day after the disconnection as the steroids and the anti-nausea meds will wear off and I’ll be on my own at home to manage the side effects. We will see how that goes. I’m keeping a journal of all of the side effects for the docs, which is more technical. I’ll write out my feelings here (if I feel up to it).

Felt pretty tired last night and went to bed early (I do tend to go to bed early normally, but last night was at around 7:15) and woke by 1am with some night sweats but nothing too bad. But then I was awake for several hours and just couldn’t get back to sleep. So the fatigue I feel this morning really just feels like I didn’t sleep right.

I am trying to keep at least a little bit of food in my stomach at all times during the day. No more intermittent fasting for me and so far I haven’t lost any of my appetite, so hm. I hope this doesn’t bloat the hell out of me.

Time will tell for all of this.

My friends are my strength. I continue to receive amazing messages and cards and beautiful flowers and boxes for chemo patients and snacks and such. My heart is simply overfilled with love and it truly is giving me life.

Like, you don’t know what living really is until this stuff happens and I’ve experienced a lot of it now at this point in my life. The message is CLEAR and I take nothing for granted.

Now. A little bit more work and then off to the DISCO!

Love and life,
GS

Parliament ⋅ March 26, 2021

Love you babe!!

Ginger Snap Parliament ⋅ March 26, 2021

Love you right back. Always!

Deleted user ⋅ March 26, 2021

Thinking of you and admiring the hell out of how you are handling this. I would not be so brave. You are amazing!!!

Ginger Snap Deleted user ⋅ March 26, 2021

I actually think about you and how you roll with those monthly infusions you do for your Lyme. I think you'd do this just fine. I know it's only my first infusion and I have 11 more to go after this, but I feel like I'm functioning pretty well. Gotta do it - might as well do it right!

Deleted user Ginger Snap ⋅ March 26, 2021

Yup! These infusions suck all the way around. At least I can have mine done in my bed with a nurse here in my home and my dog at my side; I don't envy you having to be in a facility. I hate losing 20 hours out of every month for this fuckery, but at least I can do it in PJs. And I've had the port/PICC line in the past and hated it. I'm so glad I just have to get IVs in my arm now - I had the port for a year and it was a pain in my ass. You need to plan a HUGE celebration when this bullshit is all finished!