A higher-functioning recovery point and Seattle

Oh my, it's been awhile!  So much to catch up on, but in summary I'm doing quite well.  I finally reached the higher-functioning recovery point that I was longing for.  About two weeks ago I started truly feeling on the good side of crummy instead of shades of less crummy.  I assure you that there's a difference.  "Shades of less crummy" is  perhaps, maybe, hopefully feeling a bit less crummy than yesterday, at least for the purposes of telling your mom that yep you're feeling better, but overall you're truly still feeling quite crummy. This was me for pretty much two months.  Then in early March, approximately coincident with decreasing my steroid dose down to 2 mgs per day (half a pill), I started to feel on the good side of crummy, with extended moments of feeling good between the crumminess.  And that goodness continues!  And the crumminess--well, it doesn't need to be discussed further, as we all know what it entails by this point.  But it's LESS. 

On Saturday I stepped down to 1 mg dexamethasone, so now I'm cutting my half-pills in half.  It's quite ridiculous, and the dose I'm getting is very imprecise because I lose a fair bit of the tiny little pill to dust when I try to cut it into quarters.  (The pill is smaller than a shelled sunflower seed before I attempt to cut it!)  As usual I had slightly worse head pain in the first few days immediately following the step-down, but now I'm fairly comfortable for most of the day.  I continue to have increased nausea as my steroid dose goes down, but I can eat through it.  It's just a nuisance.  I wonder if the nausea is just because of the steroid step-down, or does the neratinib make me nauseous and the steroid has just been masking it for me?  Who knows.  Also, my face is still puffy as can be.  I wonder how long it will take for that to go away? 

I have been working half days this week!  Huzzah!  This was my idea, because it doesn't feel right to feel moderately good and not devote some of that energy to my job, which is paying me.  Also, it would be brutal to have to work an 8 hour day straight out of the gate when I run out of time off, so I thought that starting off with half days would be nice.  Last night at dinner I told the family that I planned to actually GO to work today (yesterday I just worked on my laptop from home), and they all cheered for me!  E fist pumped the air.  It was precious.  Some treasured colleagues gave me rides to and from work, and I had a great morning with my co-workers; it was SO good to see and hug everyone.  Oh my, and I had 2000 unread emails when I started yesterday!  Goodness!  I got through 500 in 4 hours yesterday, so hopefully I can knock them out pretty readily in the next week or two.  Most of them are junk and don't need a response.  It's pretty boring to click through three months of emails, so fortunately I have some other more interesting tasks to do (at least two manuscripts to review for postdocs in the group, among other things). 

Last week my little family went to Seattle for spring break!  We had booked the trip in the fall, before the diagnosis, so I worked it out with my job to still go on the trip without abusing my medical leave.  We had a direct flight from Omaha to Seattle, so traveling wasn't too taxing for me, and we were hosted most of the time by my brother and his wife.  It was GLORIOUS.  We toured a chocolate factory, had the best weather of the year, spent three nights on the beach, went to the zoo in Ballard, visited the Ballard locks, and grilled out.  For my part, I did all of these things, but I also got lots of sleep in cosy beds, and only had one day on which I felt too crummy to participate in stuff (I mysteriously puked up my breakfast, thus freeing up the neratinib to cause diarrhea [bananas and yogurt seem to work for me to prevent this major side effect], and I was then a digestive mess for 24 hrs!).  That was one of our beach days, so the family just enjoyed the ocean without me, no big deal.  But it did mean that I didn't get to take them on a hike in the Olympic National Forest as planned, which greatly disappoints me.  We'll just have to go back!!   

Me on the beach at Moclips, Washington, with the wind conveniently causing my hair to hide my steroid moon face.

Us flying a kite on the beach at low tide.   

My heart in the Pacific.

My sis A gets the photo credit for this one.  The spouse and E jumping for joy at sunset.

We found DOZENS of sand dollars!  

My family, my bro, and his wife after we filled up on chocolate samples at Theo chocolate factory, the first organic and fair trade chocolate maker in the U.S. (as we learned on the tour).  The chocolate was DELICIOUS, and the samples generous.  

For some reason Google is failing to access photos from the latter days of our trip, so I can't post them right now, but I don't think I took very many anyway.  The ocean got most of my camera's attention.  

Oh, the final photo I have to share is of my brother's wedding blanket.  I finished it in time to deliver it in person!  Here it is folded up, but hopefully you can see the pattern in the stitches.  It turned out pretty cool, if I do say so myself.  Huzzah for no loss of small motor skills so that I could get this finished during my recovery.   Me and wedding blankets.  

R and A's wedding blanket.  Pattern and yarn from Knitpicks. I used the color Platinum.