Summer 2002: Fried Pie

M:  Thank you so much for the beautiful cairn necklace and words!  I am delighted by you and your gift.  Much love!  

This post is dedicated one of the most remarkable humans on the planet, my dad.  And it's inspired by the following quotation that's been on my mind of late:  "Would that I had the chance in my sons' lifetime and my own to one day explain to them all the forces that moved me," The Tennis Partner, by Abraham Verghese. 

I spent the summer of 2002 at the University of North Carolina at Chapel Hill, conducting research in the developmental biology laboratory of Dr. Robert Duronio.  I had been moderately terrified to move so far away, even for just a summer, but in the end I was SO glad that I did.  UNC-CH is one of the most beautiful university campuses I've ever been to in this country, and I adored my time there.  It boasts of being the oldest University in the U.S., and I relished in the history.  Most of my time was spent in the newer, science-y part of campus, but I made a dear friend, Zib, and she and I would take long meandering walks through the old parts of campus in the steamy southern evenings.  The Spanish moss dripped off of the stout old trees as our Birkenstock-clad feet crunched on the gravel footpaths.  We found a place where raspberries grew wild and frequently paused to munch on them.  We'd often, too, find our way to the main part of campustown and pop into a shop for some Froyo (frozen yogurt).  Everything we could want or need was within walking distance--history, food, music, shopping.  Everything was East Coast and noticeably MORE than everything in my Midwest.  Clothes were trendier, food was tastier, entertainment was plentiful, and I loved it.  I learned how to not eat cereal for breakfast, that I look good when I wear pink, and that the secret to buying new clothes that you'll actually like is frequent shopping where you browse rather than infrequent shopping where you must buy pants and get stuck with awful pants (yea--I may have learned this lesson that summer, but I clearly still break this last one.  I hate shopping).     

At the conclusion of the summer, the research program hosted a symposium at which all of us scholars gave a 15-minute presentation of our research projects.  It was a lovely little event, and my dad bought a one-way plane ticket out to Chapel Hill to attend.  After the symposium he and I walked back to the dormitory where I had spent the summer, hauled all of my belongings down the elevator, stuffed them into my Saturn L-series sedan, and hit the road for what ended up being the road trip of a lifetime.

I'm not sure who's idea it was to take the backroads, but to lend some adventure to our road trip we decided against Interstate travel for the first part of the drive.  We wanted to explore the country!  And explore we did.  That first day, I was driving along somewhere in western North Carolina, and dad and I were chatting up a a storm.  Suddenly, I was confronted with the busiest, most highly numbered orange detour sign I've ever seen.  It had numbers for DOZENS of highways on it, each one with an arrow pointed in a different direction.  This is not typically something that would happen in the Midwest because our highways largely run north-south and east-west in grid-like fashion.  But down in the southeast, roads go every which way, and you can have intersections with more than four turning options!  It's madness!  So I had sped past this epic detour sign, and I thought I saw that to stay on our highway we needed to go left, but dad thought that to stay on our highway we needed to go right.  Well, of course I listened to my daddy!  I dutifully turned right when he pointed to "our detour".

Suffice it to say that turning right was NOT the right detour for our highway.  We ended up completely off course, but everything worked out.  Taking the wrong turn landed us on the Scenic Blue Ridge Parkway, which was absolutely breathtaking.  The only stressful thing about finding yourself on one of the most beautiful drives in America is that there weren't many options to turn OFF of it once you found yourself ON it.  We were rather stuck on the Blue Ridge Parkway for the majority of the day, headed toward nothing in particular.

Our plan was to camp that evening (we somehow had modest tenting supplies--I must have brought them with me that summer? I don't remember at all), so at some point we needed to find a place for camping despite not really knowing where we were.  We found a GORGEOUS campground in the mountains of western Virginia, with a creek running through it and a man playing a clarinet.  He was our camping neighbor, and his lovely melody filled the air among the fragrant pines.  After we set up camp we needed to find some food, because we did not have a cooler or cooking resources on this particular road trip.  So, we hit the unknown road again and got lucky when we found a tiny town nearby.  It was the kind of mountain town that seems to exist along just one road, because the mountains are on either side of the road and there are no other places for roads.  I always wonder where they put the schools in these skinny, linear towns. 

I do not remember what the restaurant was called, but I do recall the band:  Fried Pie.  The lead singer looked to smell of Patchouli, and her sandal-clad toes stuck out from her broomstick skirt.  Her beads clicked as she rocked to the bluegrass beat.  The banjo filled the tiny fluorescent-lit church-basement-like room with its vibrations and twang.  The fiddle sang its heart out while dad and I gorged on fried okra, fried chicken (well, dad ate the chicken), cornbread, and mashed potatoes from the 5-foot buffet line.  I was stunned by our good fortune!!!!  What were the chances of stumbling upon this little town, this tasty meal, and this remarkable music????  All because of a missed detour sign and a wrong turn.  I adored this evening with my dad and Fried Pie.  But our good fortune was not to continue...

The next day we struck camp, figured out where we were, and made a beeline for the nearest interstate to make up some time.  We were still too far away from home to consider finishing the drive on this day, so we found a place to camp in the middle of Indiana.  It was either Brown County State Park or Yellowwood State Forest in the middle of the state, and it was an awfully hot and muggy summer day.  We set up our meager camp in the shade at the base of a forested hill.  It should have been cooler there, but it wasn't. 

We got back in the car and headed into Bloomington, which is likely a fun college town during the fall and spring semesters but was very quiet and dull on this hot August day.  Several establishments weren't even open, but hiding beneath a parking garage we found an air condititioned pub, and that was good enough for us.  We shared a pitcher of ice cold beer and ordered some dinner, nursing our pints so that we could prolong our time in the air conditioning.  We eventually bid a fond farewell to the modern comforts of Bloomington and set off for what would be the worst night of camping in my entire life. 

It was one of those awful summer days when the sun going down doesn't actually help cool things off.  No cool nighttime breezes stirred in the trees.  The hot, heavy air persisted in the campground, moistened my clothing, and shrank my lungs.  Needless to say we did not bother to build a campfire that night, we just crawled into the tent and tried to sleep.  I remember this being uncomfortable due to the heat, but also due to the fact that I was sharing a tent with my DAD, and so there was a limit to the amount of clothing that I could remove.  I don't think I've ever been so sweaty, and I don't sweat very easily.  I still gasp for air when I think about the oppressive heat and humidity that night.  I'm not sure that either of us got any sleep.  We probably struck camp and hit the road before sunup, I don't even remember.  It was so, so awful. 

I always knew that my dad was cheap, but in hindsight I think that that night of camping in Indiana was a defining moment in cheapness.  If ever there was a time to spring for an $80 hotel room, that would have been a great time.  Good thing we had the memory of Fried Pie to carry us home. 
     

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.

     

Golly!

Some belated thank yous (there are probably others...things arrive and I don't always catch them in a timely manner [my desk (life?) is chaos after 2 months of Lloyd recovery], so my apologies if I've missed an acknowledgment these past few weeks).

G&G:  Thank you for the teddy bears!  That was so thoughtful of you to send them from Texas.  The girls were thrilled.

Mystery person:  Thank you for the cookbook.  It has some tasty-looking recipes that I look forward to trying.  Perhaps the cookbook is just a loan from a neighbor or friend, because it was laying against my door one day, but I can't return it if I don't know who left it.  :)  My apologies if I've lost an accompanying note.  

I'd say that the hbomb has recovered up to maybe 40-50% capacity at any given moment.  Sometimes my physical prowess feels better than that, like the day I did a 2 mile Leslie Sansone walk AND took the dog on a short walk outside (let's have a moment of gratitude for ice-free sidewalks!!!  HUZZAH!!).  And sometimes my physical prowess is worse than that, like the next day when I was WASTED tired from what was likely too much physical activity on the day described, so I skipped all exercise except for yoga, and I rested and slept and started muttering, "golly" to myself.  And sometimes my brain feels better than that, like the morning I visited with my friend/neighbor and truly enjoyed myself (i.e., the act of engaging in a conversation didn't feel like a chore).  Rarely are both brain and body feeling powerful at the same time, however.  And all of it is so much worse in the evenings, which is a bummer because that's when the family is home.  But, it's all forward progress, isn't it?

(The "golly" sidebar:  I wanted some tea, so I tried to get up and make some tea but was surprised to find that I was a bit stuck in the chair due to my exhaustion, so I said "golly," then I managed to extricate myself from the chair only to realize how heavy my legs were when I tried to walk so I somewhat breathlessly said, "golly," again.  I've been saying it ever since, in moments of quaint, exaggerated incredulity at my own struggles, I suppose.  The full thought is something like, "Golly I'm surprised that this task is so difficult! What gives?"  Or, when kids aren't around, "WTF?"  Or the following phrase shared by my friend P, "What fresh hell is this?")

My quadriceps muscles are strengthening.  I'm getting better at standing up and at going up the stairs (the "golly" story notwithstanding).  Although at the end of the day it's all a wash and fatigue overrules.  But in the mornings I can very nearly go up the stairs like I usually would.  Nearly. 

I'm getting oh so close to cutting my steroid dose in half, but I haven't done it yet.  I'm trying to be more patient than last time and to more honestly evaluate "no brain swelling".  For example, I might have very little brain swelling for most of the day, but then feel acute brain swelling all evening (while my body waits for the steroid to kick in I suppose), so I wonder if I should feel no (or at least significantly less) evening brain swelling before deciding to cut my steroid dose?  What I do know is that when Dr. Radiation Oncologist asked me about the steroid step-down, he asked about the brain swelling, and when I told him that I wait for two days of "no brain swelling" before cutting a dose, he emphatically said "good".  So I think it's pretty important that I feel comfortable in the brain before cutting my steroid dose.  The last time I cut my steroid dose I had a lot of brain discomfort, so I probably cut the dose a bit too soon in my eagerness to be off of the steroids.  Regardless, the brain swelling is steadily decreasing day by day, and hopefully I'll recognize "no brain swelling" when it happens.

I don't really sleep in the afternoon anymore, huzzah!  This is probably because I'm sleeping better at night.  I routinely sleep 10-12 hours at night, which is glorious.  In the afternoons I still need eyes closed time, and I still need bodily rest, but I don't need sleep at that time of day.  That's likely freed up a bit of my recovery schedule, although I can't report what I've done with that free time.  I think I still spend it lying down, lol.  The fatigue continues, but it's not as bad as it was.  Healing a brain is energetically expensive, I guess! 

I conserved my energy on Thursday so that I could accompany the girls to Science night at their elementary school.  I was glad to be there with the family, and the girls appreciated that I could share the activities with them.  They had a ball, and I managed to find a place to sit whenever I needed one.  No problem.  I also ran into several friends, which was nice albeit quick!  It's typically just a walk-by friend sighting at these things, because their kids are going that way and mine are going this way and so you just smile and say hi and then you're gone.  But I did get to visit with a few friends whose kids were at the same activities as mine, and that was very nice.

One friend had an interesting question for me.  She asked if I was getting bored?  Huh.  That's a great question.  The simple answer is that no, I'm not at all bored.  First of all, I'm very busy feeding myself, hydrating, exercising, resting, and healing.  Secondly, I guess I don't even know what secondly is.  I don't feel well most of the time, so I'm usually adjusting my activity to try to feel better, and I suppose that changing my activity largely prevents boredom.  If my head hurts, I lay down.  If my legs feel restless, I either exercise or find a standing-up activity, like cooking, unloading the dishwasher, organizing the spice cupboard, etc.  And if I AM feeling well at a given moment, then there are plenty of things to be done for the family, for my affairs, or for my job, depending on what I feel capable of achieving.  I definitely wouldn't say that I've gotten bored.  Am I weary of feeling unwell?  Absolutely!  But not bored.  Not yet.  If this continues on and on then I can envision a day that I get bored, but golly I hope that I'm currently on the recovery home stretch!  I feel as though I must be nearing a higher-functioning recovery point.  It's coming.  And I'm ready for it!

Top 4 items on my when-I-feel-better list:  let the girls invite a friend for a sleepover, do science, garden with the spouse, and eat broccoli.  (I am missing dietary insoluble fiber hardcore!  I'm not sure when I can add it back to my diet, but since Dr. Oncologist suggested that the steroids are one of the contributors to my prior gut issues, I'm waiting to get off the steroids before freely eating insoluble fiber.  I've cheated here and there [a few bites of beans, lettuce, or whole grain this or that] without suffering, but I remain cautious.)