Friday, February 23, 2018

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.

Thursday, February 22, 2018

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.   

Friday, February 16, 2018

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! 

Thursday, February 15, 2018

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! 


Saturday, February 10, 2018

Olympian in cancer-treatment recovery

I've turned into a recovery athlete--my hamstrings were tight and sore when I got out of bed this morning!  Ha!  That's a new development that both cracked me up and provided reassurance that I'm on the right track.  I mean, I know that between the exercises and the protein I'm getting stronger every day, it's just that I'm so eager to BE strong.  My legs are still so very heavy, and I still have bouts of whole-body fatigue.  That's when I sit in my chair with a hot cup of decaf black tea and close my eyes.  Or I lay down for my nap.  Don't worry, I've still got this.  I'm listening to my body. 

On Thursday I decided to skip my lunch steroid, meaning that I'm now only taking 2 steroid pills each day, huzzah!  This was a difficult decision because I had had pretty comfortable brain pressure for two days, and it's really really hard to chose discomfort over comfort. I was worried that cutting a steroid would increase the brain pressure.  It did, and I still have an increased level of brain pressure compared to Wednesday, but I can do this and it's not as bad as it was weeks ago.  I toyed with adding half of a steroid pill at lunch yesterday because the pressure was bothering me greatly, but I didn't and I've stayed disciplined and kept off the lunch steroid.  Each day the the brain pressure is less (better) immediately after my workout and after yoga, so my body just needs a chance to do what it does best:  heal.  And it's all about balance, because getting off of the steroids will help with the external pressure in my head (my face is so swollen from the steroids that sometimes its hard to discern between brain-swelling pressure and face-swelling pressure), and with the digestion, and with my stiff joints.  The other steroid thing that happens is that apparently when you're taking high doses of steroids like I was, your body's adrenal glands quit making natural steroids.  So my adrenal glands need to start back up again, and that will happen gradually as my oral steroid dose decreases.  I can do this.    

Digestion is still great, huzzah!  My new diet it not that hard now that I'm used to it (lots of yummy peeled root vegetables (I added beets, and eggplant, and radish to my vegetable list, huzzah for diversity!!), peeled fruits, canned fruits, avocado, banana, cooked spinach, nuts, eggs, peanut butter, some dairy, white starches).  I've been doing a lot with this and having fun trying new things.  I adapted this spinach soup recipe for my diet.  I roasted the garlic and I used ~5 cloves, I skipped all vegetables except spinach and potato, I added a dash of onion powder and turmeric, and I finished the soup with a splash of soy sauce, for Umami.  Pretty tasty!  Next week I'm going to try making eggplant bacon, lol.  Cooking the eggplant in a smoky sauce and having a sandwich sounds good.  I might not worry about getting it quite so thin and crisp--seems like the nutrition would be gone from it.   

Other achievement:  I finished a book!  My mom, B, loaned me The Paris Wife, by Paula McClain, and it was just the escapist fiction I needed to help me relax into my nap.  I'm a big fan of Ernest Hemingway and I've read many of the novels that he wrote while in Paris after WWI. This book is historical fiction about their life in Paris together as he wrote his novels and they built and destroyed their marriage.  It was a fun and easy read.  Now I've started Alias Grace by Margaret Atwood and it is awesome so far.  Huzzah for gently turning on my brain!! 

Oil for my family.4:  Monday is the spouse's birthday, so today the girls and I baked a chocolate cake from scratch.  He chose chocolate, and A said "not too rich, though!", so that ruled out my all-time favorite flourless chocolate cake recipe and my second favorite brownie chocolate cake recipe.  Many of the chocolate cake recipes I've tried turn out dry, so we tried a chocolate-mayonnaise cake recipe from a cookbook my grandma gave to me.  The girls were super skeptical about the mayonnaise, but I'm 90% sure that it will yield a moist, chocolate cake.  It seemed to be moist when I took it out of the round cake pans earlier.  We're using a chocolate frosting recipe from a different cookbook and will finish the cake tomorrow.  

Bliss list item 13:  I co-lead my youngest's Girl Scout Troop when I'm well, and my co-leader made me a poster (it's almost as tall as E!) and had all of the girls sign it.  It is so darn precious!  Thank you so much, ladies!  You're very thoughtful and kind, and I miss you, too!  I love you, friend A!       

Wednesday, February 7, 2018

Spending my oil on my kids

The balance among healing, strengthening, digesting, tasking, and creative fulfillment is delicate, to be sure.  Listening to one's body is of high importance, and is both hard and not hard.  It's hard when you're doing a whole bunch of other things, but right now it's pretty much my only job.  So, I just have to shut up and listen.  

Yesterday I think I did just a tiny bit too much.  Just a tiny bit.  I don't know what I did that was too much (probably thinking--yesterday I dealt with some Girl Scout and family tasks on the computer, no big deal, just normal stuff for a normal adult), but I have felt wiped out today.  So this morning I shirked all tasks and instead meditated for 1.5 hrs, which was a brilliant choice for digestion and brain healing.  Then I exercised and got on my feet for a bit.  

I'm trying to come up with easy, non-exhausting ways to keep my oil on my spoon specifically for my glorious children, and I wanted to share a little bit of that with you because it's precious.  

Oil for my kids.1:  My friend C had given us a jar of cookie dough mix for Christmas (thank you SO much!!), so the other night the girls and I baked cookies.  We adore baking together, always have, but having a homemade mix all ready to go made it a much more do-able evening activity for me at this time.  (We're a made-from-scratch family)  Plus, it made a smaller batch of cookies than a full cookbook recipe, so I didn't have to stand at the oven forever!  I think it was only three trays of cookies--perfect.  Just LOOK at these faces!

"We love baking with you, mom!!"  Plus, major hugs were administered throughout the baking process.
Oil for my kids.2:  This is so silly, but I'm compelled to share anyway because my brother said he might use it with his wife to get her to like leftover night so maybe it can help someone else out there, too, lol.  Last night for dinner the plan was for me to warm up leftovers while the spouse and kid picked up her girl scout cookies.  I decided to have some fun with it!  Before I laid down for my nap, I set the table, arranged it with candles (as-yet-unlit), and I wrote out a whole bunch of food choices on the whiteboard under the heading, "Are you ready for mom's candlelight leftover night?".  When everyone got home, they made checkmarks for their desired food choices, I lit the candles (because the candles were the best part so they had to be lit before the food prep), I executed the microwave and the slicing, and dinner was served!  (I did not eat from this list; I had my last piece of MIL mushroom quiche, gingered carrots, and strawberries.)  E was dancing in the kitchen, she was so excited about the checkmarks and seeing the choices.  "Mom, can we do this EVERY night?!?!?"  

"DC pasta" is simply a creamy pesto pasta (homemade bechamel sauce with cheese and a dollop of pesto--no recipe to impart, sorry) that the spouse made a few days ago.  We call it DC pasta because E discovered that she loved creamy pesto when we traveled to Washington, DC, to attend my award ceremony a few years ago.  Prior to that, she wouldn't touch pesto because of the green things in it.  But in DC my parents took us out for a fancy, celebratory Italian dinner, and the kids had to try new things.  That was such a wonderful meal, such a magical trip!  

Oil for my kids.3:  Today while I made my lunch, I made muffins for breakfast tomorrow.  I haven't made muffins in AGES; they love muffins and will be so excited by this development.  I found a simple new recipe for blueberry oatmeal muffins, and I highly recommend it.  (You know I had to eat one warm muffin, so I can confirm that they're delicious!)  They're not too sweet, not too dense, and they have lots of oats in them!  Should be a great way to start their day tomorrow, especially since it's Iowa Assessments (standardize testing) week at their school (I keep calling it the Iowa Test for Basic Skills because that's what it used to be called when I was a kid, and the kids keep correcting me, but I can't seem to remember what the corrected version is).  My kids LOVE testing week for some reason!  It's E's first year being old enough for it, and she's loving it.  They come home super amped and chatty about it.  Good for them!  I adore my children.        

Monday, February 5, 2018

Today the tapestries are woven with golden threads

Auntie A:  Thank you so much for the care package!  It is greatly appreciated!  The girls and I are enjoying the goodies.   

I returned home on Saturday afternoon to a healthy family and a disinfected house.  Everyone has stayed healthy since, including me.  Go team and huzzah! 

Since then I have been doing some major healing in my tapestry-filled healing palace.  My guts are moving with gusto.  After a weekend of bizarre gut twitching and moderate gut movement that did start to provide some physical relief, I think today I finally birthed the food baby that my ileal-cecal valve has been previously reluctant to let go.  I think that this improved my workout, because for the first time since this whole business of Lloyd-killing and recovery started, I felt STRONGER today.  Just a tad, guys, just a tad, but it's an inspired and beautiful direction.  Now I'm wiped out, lol, but also excited because I know that tomorrow I'll feel another inspired bump forward, and then the next tomorrow, too, and it'll hopefully keep going steadily forward until I'm back to hbomb status.  Huzzah!!!!!  I could kiss the oncological nutritionist right now--so very very helpful!  I wish it had been the protocol to meet with her it order to get discharged following the ileus diagnosis.  In hindsight, it seems ridiculous to have sent me home with so little dietary guidance.  But oh well.  I'm on the right track now. 

While I work so, so hard on my healing, I think that my spoon is filled with oil.  I'm not doing too many tasks, because although it's hard to admit my brain really doesn't like to do tasks or to visit or to listen or to think about anything really, but I do find small ways to keep the oil in my spoon.  I don't let people wait on me, and I've found some new recipes for my current diet and cooked them for the family.  Today I found a recipe for a risotto made hearty with ground cashews.  I went ahead and used butter and milk (I'm to eat soy products sparingly because soy is an estrogen analog, and goodness knows I don't need to be selecting for estrogen-related cancers in my body), I skipped the wine for the kids (not worried about the alcohol, they just don't like the taste when we cook with wine), and I put the herbs in the rice instead of the topping.  The risotto was very tasty, and even the kids liked it!  For the mushroom topping, I added chopped fresh spinach to the mushroom and sundried tomato mixture, and served it with a splash of lemon juice.  The kids didn't eat the mushroom mixture, which I had predicted, so I sauteed them some green beans.  The meat eaters had sliced-up brats, because why not.  Chicken probably would have gone better with the risotto, but oh well.  ;) 

I still spend my afternoons resting/napping (the dinner preparation happens while I make my lunch--today it was gingered carrots and a peach cup and a grilled PBJ [with 2 Tbsp of peanut butter! counting protein is hard work and terribly filling!! and with homemade jam that I made with my friend K on a lovely evening in August, eating pizza and drinking wine, and our kids playing together.  Let's do that again!!] )  I still spend my evenings with the family and participating in dinner clean-up, etc.  Then I do my digesting, then yoga and leg lifts, then a bit of wakeful resting (crocheting or something), then bed.  It is a rigorous healing schedule.  I am very, very busy in my tapestry-filled healing palace. 

Did I tell you that I'm down to three steroids each day?  The pressure in my brain is holding steady, so I'm going to stick with the three 'roids for now.  As soon as I have a day or two with less brain pressure, I'll cut my lunch steroid.  That'll be a great day!  Getting off the steroids will help with my digestion, and relieve my stiff, puffy joints, and all sorts of other side effects. 

Today's bonus is that it was a beautiful, albeit dangerous, snowy day.  Thor and I enjoyed watching the snowfall from the safety of the living room.  Yesterday the spouse and kids bought him a smelly new treat--a goat horn--so he chewed his stinky goat horn during the snowfall as I rubbed his belly.  I hope you all stayed safe out there!

Friday, February 2, 2018

The report from my beautiful muster point

"Muster point" is what they call the location at work to which you "muster" when you evacuate for a fire or tornado.  I thought it sounded funny to acknowledge my evacuation status to my MIL's home as a muster point.  ;)

I'm getting there, guys, I'm getting there.  For the past two days I've determined that my brain pressure was a little bit less, so I stepped down my steroid dose to 3 pills per day instead of 4 pills per day.  Yesterday was my first day of 3 pills, and brain pressure IS up today from yesterday, but it's been worse previously so I think I'm on the right track.  I'm sticking with 3 pills for the time being, and my face does feel better about it (I'm sooooo puffy and uncomfy from the 'roids.  SO puffy.)  Huzzah for incrementally decreasing brain pressure, and huzzah for steroid reduction!

I saw Dr. Oncologist today and she doesn't need to see me again for two whole weeks, huzzah huzzah!  Longer leash!  My primary jobs are to pay attention to the brain pressure, step down the steroids as able, and keep doing my super healing program.  Oh, and I need to add leg lift exercises to my daily routine to build my quads back up (yep, she noticed the atrophy.  Soooo much atrophy.  She's SO thorough, and SO good.)  She's pleased that I'm doing a daily 1 mile workout that includes leg lifts and kicks (guys, it's the hardest part of my day; seriously sooooo hard for me to do this little workout right now!) and I told her that I aspire to do more but I'm just so weak and tired, and she was super supportive.  She said to just keep up what I'm doing, then in a little while maybe add another half-mile later in the day, etc.  I was grateful for those words of support from her.  I think I'll add the quad lifts to my evening yoga, so that they are separate from my morning workout.  Sooooo hard.  

The most interesting part of my day was meeting with the oncological nutritionist!  Wow did I learn a lot.  I have been eating the exact right foods to cause bloat, which is to say that I've been eating a whole lot of the wrong foods for my messed-up guts.  I've been eating a lot of insoluble fiber (legumes, broccoli, onions, fruits and veggies with peels, whole wheat), and I need to switch the balance to eat more SOLUBLE fiber.  She suggested LESS whole grains and fewer legumes right now; she even gave me permission to eat white bread!  Gasp!  This is pretty much the opposite of my normal legume and vegetable diet, but that's okay.  I'll try it, and I'll enjoy it, and it's just temporary.  

Also, the nutritionist is a big fan of the smoothie routine because she likes that all of the food is pulverized, making it easy to absorb.  Here's a hit list of some good foods for me right now to get my small intestine more comfortable and hopefully peristalsing like a normal human:  pumpkin, sweet potato (no peel), carrots, nuts, yogurt, cooked fruits with no peels (applesauce, peaches, pears, etc.), avocado, eggs, peanut butter, prunes, cottage cheese, oatmeal, ripe bananas (not green), mushrooms, watermelon, whey protein powder.  I think I can blend up some tasty smoothies with some items on that list!  And some foods are a bit confusing, like spinach.  I told her I was putting fresh spinach in my smoothies, and she waffled on it a bit (mmm...waffles).  She suggested that it'd be okay as long as I avoid too many stems.  Maybe if I use frozen spinach, since it's partially cooked?  It seems that being cooked is a good thing for my guts, but it also sounds SUPER disgusting to put cooked spinach in a smoothie.  We'll see!

She also provided a terrific resource to look up all of the the nutrient content of your foods.  Follow the link, or just google USDA Nutrition Database.  On that page you can type in any food you're interested in and find out the nutrition facts on it, how much an appropriate serving size is, or in my case, how much fiber it contains.  It's pretty fun!  Good job, USDA!   

Oh, and she also said that drinking warm things helps with digestion, so I'm gonna add a cup of hot tea, hot water, or hot ginger water to my after-meal digestion program.  Not to be rude, but I feel like I should put a little PSA here before all of you kind and thoughtful people send me a bunch of tea (this is a real hazard of the blog! It truly is!): please note that I do not drink green or herbal tea on account of my history of lung cancer (the scientific details of why are explained in the post via the link).  I only drink black, decafffeinated tea (I do not need caffeine in my veins), and it can have spices (ginger, cinnamon, etc.) but NO herbs, mint, hibiscus, chamomile, etc.  (L, colleague, thank you for the tea you already sent!  I'm greatly enjoying the decaf rooibos!!)    

My MIL just made me a hot, fresh mushroom quiche for lunch. OMG was it good.  Thank you SO much, MIL!!  I love you!  I had ONE serving, some applesauce, and some prunes, and a 'roid. 

The other news to report is that my youngest is feeling better (fever free!) and went to school today, bless her little heart.  The rest of the family seems to be fine.  I'll return home tomorrow after the decon is complete (beloved helpers are conducting a lysol or chlorox treatment of all surfaces and handles in the house, and a hot-water wash of pillowcases and bedding.  That should do it, I think.  THANK YOU for all of your hard work to keep me healthy, family and helpers!!!  I love you all SO deeply!!

Oh, and a curiosity:  yoga pants have ceased to be comfortable, which kinda cracks me up.  I suppose that when one reaches this epic level of lounging, one notices that thorough waistbands and snug spandex actually scratch and burn on dry winter skin (I'm moisturizing, but still).  Conveniently, a women's travel group to which I belong on Facebook (thanks for the hook-up, JJ!!) had a thread yesterday about everyone's favorite comfy travel pants, so you KNOW that I took to some armchair shopping and ordered me some cosy pants based on these gal's recommendations.  I started with a pair of Uniqlo joggers, so we'll see how I like them, and I in turn will let you know how they work out, in case you too are on the market for some cosy pants.  Other suggestions from included Vera Wang or Lularoe Leggings, but I'm generally not a fan of leggings--too snug, too short, and the waistband is usually insecure.  Plus I want to get away from the clinging.  I didn't manage to find a pair of Uniqlos with my 36" inseam, but I ordered men's instead of women's so they'll be good enough, and it's cosy pants for recovery so length isn't terribly important as long as they are sufficiently loose and warm.  The other top suggestions on the thread were Elephant Pants, but their longest inseam is only 30" so that's out for me.  I emailed their customer support just in case they take special orders, and although they don't take special orders she did say that she'd suggest longer inseams to their product development team, lol.