Putting together my recovery puzzle every day

I always know it's time to update the blog when I start get text messages from family asking me, "how are you doing?"  and it's been too long for me to respond with an emoji or say "see blog".  And yet I'm clearly not going to actually answer that text because that's essentially a blog post!  How I'm doing is an extremely complicated matter that is not practical to be typed with only my thumbs.  And so the blog must be updated, even though I don't feel like I have much to say this time. 

I couldn't update the blog much before now because I felt TERRIBLE for several days after my previous post, had no brain at all for blogging, and nothing useful to say.  In the days after last Friday, I felt worse before I felt better.  The two things that got worse were the nausea and the midday brain pressure, both due to the steroid step-down.  I remember being pretty miserable all weekend through Monday.  Tuesday I think was the first day I started feeling better than the previous day, and that trend of improvement has continued in small daily increments all week.  After polishing off a box of graham crackers at some point, my nausea is now essentially gone (huzzah!), and I'm sleeping well (huzzah!), and smiling and just not being such a poor-doer anymore (my boss, C, calls the piggies poor-doers when they get sick, and I think it's an awfully cute phrase that I'm long overdue to apply to myself).

Evidence of how lousy I was doing:  I skipped my Leslie Sansone walk on a day or two, on one day I was only awake for 8 hours, and on another day I didn't eat ANY vegetables!  Gasp!!!

Evidence of my perseverance:  I never skipped my yoga, I never skipped a meal, I welcomed the kids into my healing palace when school was cancelled one day this week (they were great!), and I never skipped family time.  Huzzah!

I am still not cutting my one precious steroid pill in half; I'm hooked on my evening 4 mgs for now.  My brain steadily fills up, if you will, all day long, until I pop that pill with dinner.  But again, every day seems to be a little less pressure come steroid time, so there will be a day that I find to be appropriate for halving the dose.  But at the present moment I'm in no rush for that day.  If cutting from 4 mgs to 2 mgs is as hard as the previous step-down--ugh, I don't want to know. 

4 mgs of dexamethasone (my steroid) is a rather pleasant dose these days!  My face puffiness, which is due to fat deposition while on high-dose steroids and is not actual swelling, is SLOWLY decreasing, so this dose is not as side-effect-y as the higher doses of dexamethasone.  I seem to be sleeping better most of the time (I still have some nights where sleeping is hard--AND I seem to have worse brain pressure after a bad night of sleep).  Interestingly, this steroid dose has given me a sweet tooth.  I am craving desserts like nobody's business.  Good thing we keep the Girl Scout cookies out in the trunk of the car, lol!  But I'm still finding plenty of sweets around the house.  I discovered a delightful treat today:  in with our baking supplies I found a bag of dark chocolate M&Ms, and I put them in a bowl with some mixed nuts.  Oh man, I had some of that for dessert after each of my three meals, even breakfast.  Lol.  Hey, my glucose levels are great, and anyway I'm coming off the 'roids so I'm not worried about my glucose at all.  PLUS I was ordered by Dr. Oncologist not to lose weight.  Check that box! 

Achievements in recent days:  1) I made tacos the other night, using fake meat product for protein in my vegetarian tacos, and I cheated and ate a small scoop of refried black beans because I couldn't resist (I LOVE black beans!).  The achievement here is that my guts didn't revolt/bloat/misbehave, huzzah (beans are on my do-not-eat list right now).  2) For the past--three days I think?--I've climbed the stairs without using my arms.  I keep my hands brushing the railing to keep me steady, but it's only the force of my legs that propels me.  Huzzah for stronger quad muscles!! 3) Yesterday I logged into my work computer and worked for nearly 3 hours!  The purpose of this work was to resubmit a manuscript from Dr. JT, PhD's, thesis.  We submitted it in August or so, and we're in the final stages of publishing it.  He tried to work with the editor in my absence, but the editor insisted that I personally had to login to the journal's system and resubmit the manuscript myself.  So Dr. JT, PhD, and my dear and generous colleague Dr. TC, PhD, prepared the revisions completely without me and sent me the final product to resubmit.  And I did it, huzzah!  The resubmission didn't take a full 3 hours, but once I got my work email opened it was hard to stop dinking around in my inbox!  I had over 1500 unopened emails--this is a new record for me, because I've now been out of the office longer than any chemo, surgery, or childbirth event.  Well, maybe I haven't yet been away from work longer than I was for maternity leave, but back then I didn't get as many emails.  But three hours was all my brain could take, and so I closed the laptop and then closed my eyes.  Yay for science!! 

What else do you want to know?   I haven't been on an outdoor walk in awhile because it's too icy out and just not safe for me, so that's kind of a bummer.  But the sun was shining yesterday and that lifts one's spirits even from indoors.

Brain MRI tomorrow!  I've been told not to expect much of a change in the tumor because it's only been six weeks, which is not enough time to see shrinkage.  The purpose of tomorrow's scan is to make sure that there's nothing anomalous going on, probably like necrosis or something.  We'll see what we see!  An aside that this made me think of:  when I'm meditating and my hungry dinner-plate orchid flies into my brain, it no longer munches on Lloyd/Pearl.  It now just lays there, covering my brain, and I imagine it's behaving like a super-absorptive microfiber towel, sopping up the swelling.  I'm cool with that.  Take away my brain pressure, mysterious hungry absorptive orchid.  Fly it on out of there.