Monday, June 6, 2016

New Normal

I officially finished my intensive chemo. That was the "hard stuff", and now I'm on to maintenance chemo, which is supposed to be the easy stuff. I've heard all along that even though there are so many less appointments, and so many less drugs, it's still not easy. In fact, I heard it's still very hard. I didn't want to believe those words because I was ready to get started on my "new normal", but now I'm here, and I'll tell you first hand, it's hard.

I got my PICC line out over a month ago, got some time off to remember what it feels like to be human, had a successful bone marrow biopsy, and had some time to let my counts recover from the zeros many of them had been lingering at for a while now. My counts are now great, and I'm back at it, to see where they lead me next. In the last 2 weeks I met my radiation oncologist, had my last meeting with my regular oncologist for the next 2 months, had a lumbar puncture, my first IV chemo injection without a PICC line, started daily chemo pills, started my first 5 day stretch of monthly steroid tablets, and have had 3 radiation appointments with only 9 more to go in the next 11 days. Out of all of those things, I will tell you that the worst has been the steroids. That sounds so anticlimactic, right? Steroids are officially the second worst, cancer taking the top spot, in my mind.

Right now I am on my last day of the month that I have to take Dexamethazone, which is the steroid I'm prescribed. "Steroid" often brings to mind thoughts of big and strong people with 'roid rage, but I'll tell you that I am only having the 'roid rage, but not big and strong. It's actually very weird. Most drugs give you a side effect, it's pretty straight-forward, you can deal with it, and it's relatively predictable. Dex makes me feel like a crazy person. I get aggravated, but only in my mind (so far), I feel depressed and emotional (not my usual MO), sometimes I want to eat everything, and sometimes I can't stomach anything, my mouth tastes terrible all of the time and my throat hurts like I'm on the verge of getting sick, and sometimes I have uncontrollable amounts of energy and am unable to sleep, and at other points I have no energy and feel just plain "blah" for hours or days.

I'm ready for my new normal, but hopefully it's more than this. This is very frustrating. My hair is growing back (although it will likely fall out one more time from radiation), summer is here, we've got plans to fulfill and places to be, but I'd rather not do those things while feeling like this. I know that I've got plenty more recovering to do and that it's a long process. I've always known that. But right now I'm feeling a little impatient, and quite frankly, over it.

I imagine tomorrow will be better, it is Monday today, after all.

P.S.. Have I shared "The Spoon Theory" with you all? It's a bit of a read, but it's helped me a ton while first understanding the lives other people who have illnesses that you can't see just by looking at them, and then understanding myself through all of this, and now in conveying important information like how I'm feeling, and my energy levels to people who need or want to know. It's tangible and easy to grasp, unlike many things in the medical world. Check it out when you've got a minute. 


  1. I can't wait for this day..the day when I read your blog and it says you're done with all of this! I think about you everyday, and you're thought about a lot in my house. You can do this! Hugs��

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