Validation, and neither the Lion nor the Unicorn are the problem

The spouse and daughters are out having fun, so this is just a quick post to follow-up from yesterday's post and today's visit with Dr. Oncologist. 

"Overly poorly"--those are Dr. Oncologist's words to describe how people typically feel when they step down their dexamethasone steroid from a high-dose to a low (or ultimately zero) dose, which is what I'm doing.  Check that box.  I think that "overly poorly" is the honest way to describe how I feel.  I was overly generous with that Lion and the Unicorn crap.  ;)  SO:  my feeling exceedingly fatigued and crummy is the fault of the steroid dose-decrease process.

Things I learned today:

1)  Stepping down one's steroid dose actually increases fatigue.  Check that box.  She says it's in part because my adrenal glands have completely quit making my body's natural steroids, and it's taking my body a lot of energy to get my adrenal glands turned back on again.  This process takes a looooong time apparently.  I was relieved to hear that what I'm going through is normal and expected, in particular because MY expectation was to be feeling considerably less fatigue by now.  Instead, I'm feeling more fatigue each day!  It seems so backwards, doesn't it?  But it's all part of the healing process, and I'm doing it.   

2)  Stepping down one's steroid dose also causes nausea.  Check that box.  It's not nearly as bad as chemo-induced nausea, and I can eat through it, but yea it's crummy.  As if eating wasn't already a pain in the ass.  I am SO over protein powder.  I hereby declare that I'm taking a break from it. I deserve at least that much. 

3)  Stepping down one's steroid dose increases brain pressure.  We already knew this one, but I mention it because the time of day I chose to retain my steroid dose (evening) has set me up for extra discomfort.  I told her I was taking my one steroid pill in the evening.  She snapped her head away from the computer to look me in the eye and said that most people are more comfortable when they keep their dose to the morning, not evening, because then they have the benefit of feeling the steroid all day.  I'm pretty sure that I swore, and then said that I would have greatly loved that, but previously I thought I understood that she wanted me taking my steroid as far away from the neratanib as possible, and she had told me to take the neratanib in the mornings.  So when I did my steroid step-down, I presumed that she wanted me to keep my dose in the evening.  She said that I'm welcome to try and move my steroid to mornings, but I would have to do so by shifting my pill by a one-hour increment every day; I can't just skip my evening steroid and instead take it the next morning.  This incremental 'roid movement would shift my food intake (because I have to take the 'roid with food) and be a real pain in the butt.  SO, I told her I'm a tough cookie and I'll just keep my steroid in the evening.  But yea, the timing of my damn dose means that I feel steadily worse as the day progresses, then I have a few bites of dinner and wolf down my steroid before the meal is even over so that I can start feeling better.  I don't really feel it kick in like one does when one takes Nyquil or something.  But I trust that it's helping, and I do indeed feel oh so much better in the morning.  Mornings are my time to shine!   

4)  I told her that I wait until I have two days with no-ish brain pressure and that's how I decide to step down my steroid dose, and she said that that sounds good!  So I'm doing things correctly.  She asked about the brain pressure and I said that I have some, but it's not the worst that it's been and it's not zero.  She was fine with that.  So I think I've got a good, medically endorsed balance between brain pressure and steroid dose.  For the next 'roid step-down I'll have to start cutting my pills in half, then after that I'll take a half a pill every other day, then I'll be to zero.  No indication or inkling of how long that's going to take.  One day at a time, patience with my body, the present moment is mine. 

5)  Finally, steroids specifically deteriorate ones quadrecep femoris (thigh) muscles more than other muscles, so my current struggle with stairs and standing up is also completely normal.  I am doing a great job with my exercises, and I asked for other strength-building suggestions.  She suggested adding reps of simply standing up from sitting, maybe starting with a pile of big books on a chair or something a little higher than an actual chair (because it sounds ridiculous, guys, but I can't stand up from a chair without using my hands).  She directed me to hold my hands in namaste (aka prayer) or something like that for balance, and also to have something in front of the chair for support when I need it.  So, in addition to my walking workout, my leg lifts, and my yoga, tomorrow I will make/find time for doing standing exercises despite my increased fatigue.  This really is the healing Olympics! Holy cow!

This is hard, yo.  I've totally got this, but whew this is hard.  I feel like I'm my own puzzle, and every day I have to put it together under new conditions!