Round 3 and the Dreaded Steroid Taper

I had my appointment with the new Dr earlier this week, and it went really well I think.

He asked how Ive been, how symptoms and attacks have been, if they were different on steroids, how is the steroids going.. And the tapering.
Oh dear god the steroid tapering. It’s evil.

But I’m down to 10mg a day from 40 a few weeks ago so it’s no wonder I’m an emotional, ice cream maniac.

As the appointment wound down he casually said it was time to go back for more chemo/cladribine. I knew it was coming, but it doesn’t make it any easier.

So I have another week to let my body adjust to lowering prednisone and get ready for a week of treatment. I also need to get my hormone shot when I go on my first day. This might be a yucky round because so many things are going on at once. But I have to think that it won’t be too bad.

Until then… More ice cream and pointless crying.

Back at ‘Er

Welp… Tomorrow morning I see my new Dr for the 2nd time. Still at Tom Baker Cancer Centre, but down the hall from old Dr.

I will be updating to fill in the blanks up to now about the Dr switch and what I’ve been up to etc, but wanted to get going with the now too.

I’m scared/nervous/excited, because this will be our first visit where he’s had a chance to really look at my history and follow me for a bit, and therefore make HIS decision on where Im at and on how to move forward with treatment.

I’m pretty sure it will involve going back to chemo as early as next week, but we shall see tomorrow.

I like not having the apprehension I used to have before appointments about reminding myself to hold my ground and be firm with my Dr.

For some reason I had/have a horrible complex and just found it very hard not to make my care as easy on her as possible, instead of being truthful about how I feel and where Im at, and demanding the appropriate care and treatment.

It’s something my counsellor and I worked tirelessly at! But in the end, I just needed to give us a break from each other and ultimately get a second opinion, as one is almost foolish not to when seeking the best options for a rare disease.

So that’s led me to tomorrow’s appointment…. Fingers crossed!

Chemo/Round #2- Day #2

My eyes are really swollen today. Not sure why. Fluids? Steroids? Mast cells?
The inside corners of my eyes look so swollen and weird! Lol

I’m so happy and relieved that they left my IV in for the remainder of this round! Gets really annoying being poked constantly!

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