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.)   

Quick! I need to patent my tapestry-filled healing palace!

SF, from high school:  I don't know if your mom reads the blog, but she sent me the most lovely bracelets today!  I wore them to my scan for good luck.  I'll try to get a note in the mail to her.  Thank you!

A (sis):  I wore the turtle bracelet for good luck, too.  

Oh man, I can't wait to tell you about my thrilling brain MRI results!  Remember how I told you, because I had been told by allll the doctors, not to expect any changes out of Lloyd yet?  Because not enough time has passed and so even though the radiation will have killed Lloyd, my body will not yet have reduced him in size?  WELL...they all were WRONG in my case!!  SO unbelievably wrong!  They clearly have not toured my tapestry-filled healing palace, nor have they met my hungry absorptive orchid, nor have they beheld my yellow paintbrushes, nor have they encountered the healing power of carnation nation!!!

MY body has reduced Lloyd by 75% ALREADY!!!!  75%!!!!  This is amazing for at least two reasons:  1) little to no reduction was expected so soon (as mentioned already), and 2) at the outset I was told to expect 50% reduction in the size of Lloyd.  So not only has my body reduced Lloyd's size in Olympic-record speed, but it has also done so at a greater-than-expected magnitude.  Huzzah huzzah huzzah!!  All of our hard work has paid off, guys!!!

You KNOW I have pictures!!!  Dr. Radiation Oncologist was so excited to show them to me!  My sisters were at the appointment with me, and although I was totally engrossed in the pictures, my sisters were watching Dr. Radiation Oncologist, and they said that he was like a proud papa:  scrolling through the images; finding the best images for me; then smiling, rocking back on his heels, and folding his arms when he paused for me to take a photo. 

Two frames of my brain that compare Pearl (left) to Lloyd (right).  Pearl and Lloyd are the white blobs in the center-left portion of my brain frames.  Note that Pearl has retreated from the midline of my brain, hence the complete disappearance of my headaches!  Lloyd can be seen to be pushing up on my brain midline, which was causing the headaches.  The image of Pearl is from today, and the image of Lloyd is from late December (my first Lloyd scan).  

75% reduction, guys!!!  Unbelievable!!  One of my sisters asked if my body will keep shrinking the tumor or if the best result has already been achieved, and Dr. Rad Onc assured us that yes, my body will continue to shrink the tumor down, so the next scan will reveal just how small I can make that Pearl.  How low can I go?  This is my new healing challenge, after I get through the steroid-step-down and brain swelling challenges.   

After the Lloyd result had been shared, I asked about the brain swelling, because you can kind of see the swelling around Lloyd here but you can't really see any swelling around Pearl.  But I can still feel it!  So he pulled up some different images that show the swelling better than the first images.  It's still rather hard to see, so I tried to draw circles around the swelling.

Two frames of my brain that compare the swelling around Pearl (left) to the swelling around Lloyd (right).  It's really hard to see the swelling around Pearl, so I circled it in blue (none of the colors showed up very well).  To keep things even I circled the swelling around Lloyd, too, but of course it didn't really need it because the Lloyd image is a bit high-contrast (I had no control over this).  The image of Pearl is from today, and the image of Lloyd is from late December (my first Lloyd scan).

When I saw how scant the swelling is around Pearl, I asked if it fluxuates or if I'm imagining things when I seem to experience a difference in brain swelling as my day progresses?  As in, as the amount of steroid decreases in my body between doses, does the brain swelling increase?  Because that's what I feel is happening.  He said that oh yes, that is certainly what's happening.  So the amount of brain swelling shown on the scan is the amount of morning brain swelling, which is a bit less than the amount of early evening brain swelling, right before I pop my 'roid.  Fascinating. 

I asked about evidence for necrosis, and he said that it's too early to tell that.  Huh.  I had thought that that was one of the purposes of today's scan.  So if it's too early to visualize necrosis, and it was supposedly too early to visualize shrinkage, what WAS the point of today's scan?  I must be confusing some aspect of what I thought I'd been told.  Well, regardless, today's scan and results ended up being QUITE exciting, didn't they, and I'll take it!    

And that was the end of the appointment.  He clearly was very pleased with this result, as was I.  He said he'll see me again in three months, when we'll do another brain MRI!  Huzzah!  

Then I proceeded to have a lovely midday with my sisters, who had both taken the day off from their jobs and motherhood to take me to these appointments (thank you!!).  They did my Leslie Sansone walk in my living room with me (which for them is like a warm-up to a real workout, lol), then we made gourmet nachos for lunch (tortilla chips, cheese, veggie taco meat, beans (for those that could--you know I snuck some since I didn't die the other day), salsa, avocado, greens).  A good time was had by all.  

I can't end this post without a quick shout out to the Medical Physicist who spent 12 hours planning my stereotactic radiosurgery (SRS) treatment plan to kill Lloyd.  He did an awesome job, methinks.  His treatment killed all of Lloyd so thoroughly that my body could get in there and rapidly start cleaning him up.  I am deeply grateful to both the Medical Physicist and Dr. Radiation Oncologist for their excellence.

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.   

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! 

My tapestry-filled healing palace now harbors a Lion and a Unicorn

The past couple of days have brought some conflict into my tapestry-filled healing palace.  This is for several GOOD reasons, I think.  The conflicts have conjured the Mother Goose nursery rhyme The Lion and the Unicorn into my head:

The Lion and the Unicorn were fighting for the crown. The Lion beat the Unicorn all around the town.  Some gave them white bread, some gave them brown.  Some gave them plum cake and drummed them out of town. 

The conflict is between my body (let's say my body is the Lion) and my brain (the Unicorn, clearly).  My body has been craving more movement, which is AWESOME, but my brain wants to sit with eyes closed.  I am doing my best to find the right balance, and give both the Lion and the Unicorn what they need in the present moment, but "balance" feels a bit like "versus" these past few days and sometimes it's just dang hard.  Drumming them both out of town sounds mighty good to me right now!  Fortunately I also need to make time for digesting and hydrating (that's what I'm doing right now), so I get to work on a little blogging here and there (I have a non-cancer post that I've been working on for a few days that's almost finished!  Fun creative activity for the hbomb!).  And I'm really good at typing so I can actually type this with my eyes closed half the time.  I just typed that whole sentence, and now this one, with my eyes closed.  Huzzah!   

From whence did this conflict arise?  I have hypotheses:

1)  On Tuesday I dropped down to 1 steroid pill per day, because I had a couple of days with what seemed to me to be near-zero brain pressure.  So, I just take one 'roid at dinner now.  This has yielded a noteworthy increase in head pressure, for which the best relief is sitting or lying down with my eyes closed.  An ice pack on my face feels good, too.  I see Dr. Oncologist tomorrow--maybe I am being too aggressive with the steroid step-down and need to add a half a pill at breakfast?  I'll ask.  It's likely that this is just the process and I'm dealing with it appropriately. 

2)  On three of this week's four days, I have had two walks per day, huzzah!  I still did my 1-mile Leslie Sansone living room walk each day, and at a different point in the day I added a short walk in the neighborhood with a buddy.  Trekking beyond my tapestry-filled healing palace out into the healing garden of the real world is lovely for my mind and my body, but this additional exercise is likely a factor in my Lion and Unicorn conflict, right?  How can it not be?  One other physical achievement is that when doing my daily yoga routine, I now hold the down dog position for one full minute.  Huzzah!  I still can't go up stairs without the help of my arms and a railing, though.  But I'm stronger each day. 

So, I spend my entire day trying to resolve this conflict.  Move, rest, move, rest, move, rest.  Yesterday my brother called me at about noon, right after I had completed my Leslie walk but before I had completed the cool-down and stretch.  He was like, are you busy?  And I was like yes, yes I am.  I had to laugh at myself.  I just put him on speakerphone and kept doing my stuff.  Sitting time was over, I couldn't just sit and talk on the phone!  It was time to stretch and make lunch!

Let's see, I had at least two more things to say.  What were they?  Oh yes, one item is that my mom, H, has pointed out that Lloyd needs to be renamed.  Lloyd doesn't exist anymore.  We irradiated him, and my body has been working very hard to extricate his carcass without damaging my basal ganglia or other adjacent brain tissue and without causing any seizures or trouble swallowing or seeing.  Thank you, body, for doing such a good job so far!  I appreciate you!!!  Mom has suggested the name Pearl, and I think that that's a good name for it.  In oysters, pearl formation starts from an irritant getting into the oyster; Lloyd was definitely an irritant in my brain oyster!  The oyster then coats the irritant with a pearl sac and nacre, slowly turning it into a pearl.

Next Friday, Feb. 23, is the first day we get to evaluate Lloyd's transition to Pearl.  I have both a brain MRI and an appointment with Dr. Radiation Oncologist.  So stay tuned for those results!  I'm super curious to see how things are going in there.

Yesterday was Valentine's Day, and I had previously blogged about a recovery goal to have a date with the spouse.  Goal achieved!  We had to make some changes to our plans, because our original reservation was at a restaurant with a fixed-price 5-course chef's tasting menu with wine pairings, but with my current dietary restrictions and lack of alcohol consumption this didn't make sense anymore.  So I moved our reservation to our favorite and fancy Thai restaurant downtown where I ate yellow curry with tofu and potatoes and rice, and an enormous fancy chocolate lava cake.  The spouse's dinner was delicious, too.  Clearly I was smitten by this cake, I'm swooning quite dorkily in this video. Our daughters would have LOVED to experience this cake; I felt a little bit guilty eating it without them.  Our server said that they only serve this dessert on Valentine's day, though.  Next year maybe we'll take the girls out for a Valentine's dessert.  That would be fun.  Huzzah for going out, huzzah for eating out, huzzah for the spouse, huzzah for the MIL for childcare!  I love you, babe!  I love you, MIL!  

 

Oh, and the chocolate mayonnaise cake that we made for the spouse's birthday was delicious too!  I highly recommend that recipe! 

Naptime!