New layout for my healing palace

Hello friends!  Sorry it's been awhile; for awhile I felt like I didn't have any updates, but now enough time has passed that it's time for an update regardless.  I feel like I'm in a healing holding pattern, but many things are indeed getting better.  First of all, 4 mgs of dexamethasone (2 mgs in the morning, 2 mgs in the evening) is my JAM right now.  This dose is low enough that I am able to rebuild my physical strength (I'm walking the kids to school every day [1.4 miles], doing a 2 mile aerobic workout almost every day in my living room, plus random bonus dog walks with friends, plus 20-30 minutes of living room yoga every day, plus I've resumed attending my Monday evening yoga class. Huzzah!) while feeling fairly comfortable in the head most days.  I definitely notice the battle between strengthening my quadraceps muscles and the steroid deteriorating them, but it's better than it was.  I can climb stairs much more easily; exiting a low car remains my most difficult feat.  I have no plans to step down this steroid dose until AFTER my next brain MRI (May 29), because I'd rather not have it show another increase in tumor size.  Dr. Oncologist is okay with this. 

My primary healing goal needs to be turning Lloyd into Pearl, and keeping the brain swelling down in the process.  It's not really clear what I can do to achieve this goal besides steroids, rest, hydration, and nutrition.  In fact, with the improvement in my physical strength has come an inattention to my brain.  Sometimes I do too much (I suppose), and then my head starts to hurt and I need to close my eyes.  I sometimes forget that my body has a pretty major project going on in my head.  Actually, if I'm honest, I haven't at all figured out what leads to the days when my head feels good versus the days when my head feels bad.  My hypothesis is that it's related to sleep and hydration, so I'm trying to resume being intentional about drinking water and resting, like I used to be when I was in the thick of my healing palace (January and February).  I'm still working half days (mornings), then coming home for lunch and a nap/"eyes closed" time (turning off all sources of mental stimulation help my head to feel better). 

I've resumed my normal diet!  Broccoli and beans and whole grains, huzzah!  My guts seem to be fully recovered from the ileus trauma, and fully adapted to the neratinib.  I am currently suffering from no digestive issues at all.  This is wonderful because cooking is easier, and because I've gained a bunch of weight (15 lbs!  thanks, steroids and white bread) and need to get rid of it ASAP.  The increase in physical activity and resumption of my normal diet containing insoluble fibers will hopefully lead to relatively speedy loss of the extra weight, but I am nearly 40 and I understand that weight loss can be harder to achieve as you age.  Hopefully I'm still a spry 30-something when it comes to weight loss.  We shall see. 

I've been doing fun things!  My mom, H, was here for a brief visit, and I accompanied my daughters on a Girl Scout campout, and I had an evening out with friends.  Oh my and with the wonderful springtime weather we've had great family time outside that includes playing badminton almost nightly and teaching my youngest how to ride a bike.

Training on a grassy hill at a neighborhood park

And pedaling, all by herself, on the same hill!  She got it!  Huzzah!!

Tonight my yoga instructor was asking me about my recovery, and she was curious as to whether the inverted poses such as downward dog make my head pressure worse.  I told her that in fact the opposite is true!  Forward fold is currently one of my favorite poses, and my head often feels a bit better after spending a short time in forward fold.  She said that she's not surprised because it is a pose of surrendering, and so being in forward fold allows me to physically and psychologically surrender to whatever processes my body needs to be doing right now.  Cool.

The last thing to report is that I have a PET scan on Friday.  Results the same day.  No worries, no problem.  Love and hugs!