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. 

Perspectives

This whole experience has really put a lot of things into perspective. There are so many moving pieces in life in general, and when you throw the C-word into the mix things get darn complicated!

We all take a lot for granted everyday, so I'm going to make a list of things that I used to take for granted, but from here on out will have a whole new appreciation for:

The feeling in my fingertips. 

My husband being the most amazing person to walk this earth. 

Fit muscles. 

Eating foods with "Live Cultures".

My mom being willing to drop everything for me, to do whatever I need or want. 

Having friends who care so much about my well-being. 

My immune system. 

Having health insurance. 

My dad living right across the street from me. 

Having a normal shaped face that isn't puffy from Prednisone.

Starting a family. 

Showering without a PICC line. 

Kind nurses.  

Living in a community that will stop in their tracks to help someone who needs it. 

Sleeping through the night without unexplained pain. 

Strangers who reach out. 

Doctors who know what they're doing. 

Marrying into the most supportive and loving family in the world. 

Having hair. 

Being able to go to the grocery store or other public places without a mask. 

Getting to be a teacher. 

Having energy. 

Being at home. 

Life. 

Yesterday I started writing, and it was really hard. I had let my brain go to mush while I was in the hospital, I guess I had other things to worry about. It took me hours to get something down on paper, and I still couldn't figure out if I was making any sense. But then it got easier and easier as the day went on. And then I couldn't stop writing. It was the craziest thing! Now I have pages of thoughts written down, in all sorts of different stages of completion, that I will eventually post here on my blog. I figured I would outline how this whole experience has affected different parts of my life already in a couple different blog posts about some general topics that have really played big factors in this whole adventure already, and I'm sure as things go on my perspectives will continue to change and grow.

The crazy part is that once I started writing, my thoughts became more and more clear. And then I couldn't stop thinking! So I got a terrible nights sleep last night, because for the first time since my diagnosis, I was thinking of all the things I needed to do and could do to be productive. I was adding to my to-do list, I was writing down ideas of things to write about, and I was thinking about what papers needed to be filed and bills needed to be paid.

In a selfish way, I am sort of using this whole blogging thing to turn my brain back on, maybe it will make my grad school work easier or at least keep "chemo brain" at bay. And obviously this will be great for me to look back on once this adventure is in the rear view mirror. And maybe someone will read this who is going through a similar adventure and it will help them in someway. Regardless, I'm doing it.

Don't let me slack off, people!

Much love!