Inventions part II CarUno

On our vacation in Washington State a few weeks before brain surgery, we did a bit of road tripping.  We flew to Seattle and then drove >4 hours to vacation with my brother in the Methow valley of the Cascade Mountains.  We played a lot of car games, and my youngest invented a car game on the spot.  It's too good not to share.  She said let's play Uno, so we dubbed this version CarUno.  For those of you who haven't played Uno in awhile, it's a card game whereby play proceeds by playing a card from your hand that matches either the color or the number of the card that is in play.  CarUno is built on I spy--look out the window and spy something, then say two features of the thing that you spy.  I see something green and bushy.  For CarUno, the next player can spy something either green or bushy.  I see something green and signy.  I see something that is signy and yellow.  And on our trip we decided that waterfalls were wild.  So if we happened past a waterfall on your turn you could claim it and save it for later to change the features.

That's CarUno!  Let us know if you give it a try (I'm looking at you, Nicole!)   

Inventions Part I The Pancake Scale

I invented the Pancake Scale as a way to talk to my kids about my recovery.  Every day my now-10-year old (Happy birthday, E!!!) bounds down the stairs and comes straight to my Charlie Buckets bed and asks if I'm feeling better.  Of course, I'm feeling better in tiny increments.  So in the early days I'd simply say yes honey, I'm a little bit better.  Then I realized that she and I would benefit by having a currency for this conversation.  She loves pancakes, and I make pancakes from scratch that are fairly thin.  So I invented the pancake scale of recovery.  Each day I'm a pancake thickness or two better than the day before, and we're looking forward to the day that I'm a whole stack of pancakes better.  Another advantage of the pancake scale is that by the end of the week she can add up the pancakes and appreciate that even though each day my recovery might seem to be minute and slow, by Friday 8 pancakes of recovery is quite a stack of pancakes = quite a bit of progress.

Mmmmm pancakes

Recovery strides and introducing Neil

I'm sleeping better, so that helps everything.  About a week ago I had my first uninterrupted night of sleep since surgery.  I think I figured out why I feel like massive headwound harry:  I have extensive numbness from right eyebrow carrying up through an entire quadrant of my scalp.  The surgical resident said that it might be that way for the duration, or I might regain feeling over the next three months.  It's a very strange sensation, but I can get used to it.  Oh oh oh and guys, guess who can still raise both of her eyebrows!  Me me me!!  Functionality not lost!  Cognition still getting fired up.  I kinda hate it when I'm doing something and someone tries to talk to me about something else.  I just can't track two things at once very well.  Not that anyone can, but right now if I fall off of a thought train, I'm not getting back on without help.  Before brain surgery I could sorta hop around the thought trains, losing some trains occassionally when tired, or hungry, etc. but right now the trains seem to be flying past me and I best not get distracted once I'm on one. 

Apparently in addition to Pearl Jr (the tumor tidbit left following the debulking of Lloyd) I have another little brain tumor tucked away in there, I think Dr. SRS expert said near my right ear?  So the plan is to CyberKnife it at the same time that we CyberKnife Pearl Jr.  I was tossing around several name ideas, and this silly little inconvenience is going to be called Neil, because as I've watched the film footage of Apollo 11 landing on the moon, the image I saw of my new brain tumor looks just like Neil Armstrong's bootprint on the moon, minus the boot texture.  It's my understanding that this new (small) brain tumor (Neil) was just discovered on my midnight post-operative MRI. Dr. SRS expert is the only one who has discussed it with me so far.  (commercial break to tell the tale of my midnight MRI: that was an adventure.  My nurse zoomed me through the hospital in my bed, literally pushing a button on my bed that audibly said "zoom" to get over door bumps.  We took the elevator down to the MRI place in the basement, I tried to crack a joke about whether we'd find Milton working down there (my nurse was too young, he didn't get the reference to Office Space.  Needless to say all of that zooming made me nauseous, apparently, because I puked all over the MRI technician when we arrived.) In my defense, people kept giving me my medicines(pills) on an empty stomach.  No!  Let's put some food in there first, please. Otherwise we'll have trouble when you zoom me down to MRI...

Recovering!  Infrequent visitors tend to be the most uplifting because they come in and tell me how great I'm doing compared to the last time they saw me.  The folks (i.e. my immediate family/roommates) I see every day don't notice my improvements as much.  Still wearing a coban turnicate to keep my goose egg from popping out of my bone hole.  I went to the surgeon last week for him to check out my goose egg, and he says its fine.  He expects it to be healed in about two more weeks.  He ordered a CT scan to check on fluid build up in my brain cavity? cavities?  I'm not sure about the vocab.  What I know is that the outcome of the CT was fine...it did not reveal too much fluid in places it shouldn't be, I guess, because if that were the case he'd have to put in a drain and no one has called to tell me I need a drain.  I'm too tired to login to mychart and find the actual results to report to you.  I think this is good enough to convey the point.  The surgeon thinks it's fine, so that works for me.  He also asked me who is in charge of my steroid dose?  I told him that he is right now, until Dr. SRS expert takes the steroid baton next week.  Dr. Deep Seated Brain Tumor (DSBT) Surgeon decreased my steroid dose down to 0.5 mgs per day.  I love that authority!  This change in dose I think is making me feel even more sleepy during the day, but at least I can sleep at night, and possibly even get higher quality naps!  Dr. DSBT Surgeon wants to see me again in two weeks to check on my bone hole goose egg. 

I'm doing my physical therapy daily like a boss, until my head starts to throb and then I lay down for a bit.  And I ice my bone-hole goose egg.  The throb is strong enough that it visibly bounces my ice pack up and down.  For awhile I was having a sharp pain in my head, but that hasn't happened in about 4 days.  My daily goal is to do just enough physical therapy before the head throb starts.  My tray on my walker is awesome.  I can carry around my  own stuff now, like a plate of toast. Before i was limited to what I could carry in a pouch on the front of my walker.  A word of caution about the tray:  I shouldn't carry my pillbox on my tray.  I tried once, and it slipped off.  Fortunately only two pills popped out.  Also, just because i can carry all manner of things doesn't mean I should.  Carrying stuff on my tray makes my walker much heavier, which is bad for my head pressure.  Another walker update is that I've finally got some tennis balls on the two legs of the walker that lack wheels.  The dog now attacks these tennis-ball-clad walker legs.  He's so confused by them.  He has his own tennis balls outside.  His inside toys are stuffed squeaky squirrels and ropes. 

Finally, I think I figured out why i was getting so hungry at night at the beginning of my recovery.  It's because my temporary bedroom is adjacent to the kitchen, so I could smell the dinner smells all night an longing for Ami to bring me a snack.  That and the fact that healing takes a lot of energy, so i am eating a lot. 

Lloyd's last...

In the days leading up to surgery I took some time for myself to do things that I enjoy.  As I undertook these things with mindfulness, I cracked myself up by thinking of them as Lloyd's last____ .  Here are some photos from my final days with Lloyd.

Lloyd's last nature walk

Lloyd's last outdoor concert and sangria

Lloyd's last night out with friends.  Wait a minute, Lloyd didn't have any friends.  Martha here treated me to a thoughtful and fun evening with snacks, a movie, and a drinking game.  We watched Vertical Limit, and drank tea or lemonade every time someone made a poor decision or said nitroglycerin, and ate lots of chocolate covered things from Trader Joes.  Martha even made up a table-top drinking game menu so we wouldn't forget the rules.  Thank you Martha!  We're so silly, but it was so so fun!!!  We need to pick a post-Lloyd climbing movie--perhaps Cliffhanger?  It's sooo bad!!!  

Lloyd's last walk in the neighborhood, observing the milkweed ecosystem.

Lloyd's last time returning library books

Lloyd's last chai latte at the tea shop.

Lloyd's last embroidery project. While vacationing out in Washington the first week of June, my brother and I were having a mindful minute on a bench by a lake.  Suddenly an osprey flew across the water and dove in for dinner.  It was amazing.  Until we realized that a nearby momma duck who used to have 5 ducklings now only had 4--the osprey had picked off duckling number 5 and took it across the lake for dinner!  I decided that this needed to be immortalized on a dishtowel, especially since my brother had not yet unpacked his dishtowels in his new home and so could use some more dishtowels.  So instead of packing for the hospital or doing something useful before eyebrow craniotomy, I saw it fit to sit on the couch and embroider this epic vacation scene.  Not my best work, but I was on a serious time crunch.  The osprey turned out about how I intended it to, but my duckling is way way way too big!!!

the spread at Martha's vertical limit viewing

Shuffling into the next phase of recovery

Is that spinal fluid leaking out of your eyeball, or are you just happy to see me?

I don't know for sure.  I think it's spinal fluid.

I beg your pardon if I am repetitious with my previous post or within this post.  My cognition is returning, but I'm not yet very sharp.  I'm reading two books (one audio, one hard copy) and I can play cribbage (i.e., do simple math) so I'll be fine.  Commercial break: we play cribbage on the world's most beautiful cribbage board.  I hired a local wood burning artist [@spellbounddragonfly on Facebook] to make it for my spouse for father's day (the portrait in the center was burned into basswood, then colored with watercolor pencil.  the game board is Walnut):

I just need a little bit more time for my brain to fill in and heal, I guess.  I'm still pretty sleepy most of the time.  Sleeping at night is getting better.  I'm waaaay down on the steroids--2 mgs per day is all.  My incision is basically healed up, but my forehead gets super puffy.  I have coban (coban is that self-adhesive wrap they put on your arm after you give blood) wrapped tightly around my head to keep things together, and it's pretty uncomfy (pulls my hair, etc.), by itself, but especially when it tugs on things that hurt on their own.  The most painful thing continues to be the healing at my right temple.  I guess the surgeon had to cut a muscle there, and he's not surprised that that's painful.  For the most part my forehead and temple are full of tingling healing sensations, but only get painful if I've done too much chewing or talking.  Occassionally I get a sharp acute pain somewhere in my head.  Then I lie down for sure.  I'm not sure where that pain is...somewhere internal to my forehead?  But it's sharp and sends a clear message!  I feel like massive headwound Harry from classic Saturday Night Live, Massive headwound Harry  but I don't look like that at all.  And I don't feel like I have an open wound.  And the dog leaves me alone, for the most part.  He's excited about me having a bed on the first floor for now (I call it my Charlie Buckets bed, from Willie Wonka).  I'm still pretty wobbly and using a walker, but I'm making strides
(pun intended for my punny co-workers).  Tomorrow my occupational therapist is going to bring me a tray for my walker, so that I can carry stuff.  She didn't want to give me a tray too soon, because it'll block my view of my feet.  SO tray acquisition is a level up!!!

Folks ask about my appetite.  I am a ravenous super healer!  I'm constantly hungry.

I'm getting outside for a walk every day thanks to all sorts of helpers.   

The first Lloydless transmission

My brain tumor named Lloyd was resected/"debulked" via an eyebrow craniotomy procedure on Thursday June 20.  My amazing surgeon debulked 95% of it, in a 6.5 hr procedure.  The tiny bit that remains was left there because it is tangled up with some very important spinal fibers and the tumor tidbit is named Pearl Jr. will be treated via a Cyber Knife SRS procedure as soon as I'm well enough for that.  Tentatively scheduled for late July. I was sent home the Sunday following surgery with a shiny new walker.  I can walk okay, I'm just wobbly with a head full of debris-filled spinal fluid for now.  I'll be fine again soon.  Just need lots of rest and healing.  My incision looks great apparently, but is turning into the ichy healing phase UGH.  My eye didn't swell up.  I hardly even have a black eye.  You know what does swell up is my forehead!  Apparently its straight up spinal fluid pushing out the 1/2 inch bone hole they made in my eyebrow.  I've got a coban turnicate keeping the pressure on at all times.  It's hot pink.  Stylin as usual.  

L:  image showing where Lloyd used to live.  The black swath on the left is the path taken gently through my brain and is expected to scoot back into place over time.  R:  Lloyd's ugly self, for the last time.  Now he's embedded in a slab in the pathology lab.  Good riddance!!!

I have to keep reminding myself how much better this is than chemo.  It doesn't help that I'm up on a million steroids again, making good sleep very elusive.  But I'm trying hard!  Ice sure does help to numb the itch.  

My thoughts are with everyone else out there also trying to do the brave things and get good rest.  You can do it!!!

I'm so glad that it's done!  We did it!!!!

Prior to surgery, I was telling my friend Dr. CL that I love waking up in the recovery area because I usually feel a euphoria at being done with the procedure.  I didn't have that feeling this time, but this was so different from the mastectomies, and the procedure was so long, there were just a lot of differences.  But NOW I'm very glad it's in the past.  

I've started to have some weird dreams, so I guess I must be getting some sleep.  My dear friend Ami is currently my dream nemesis.  She keeps waking me up with the promise of snacks, but she never shows up with the snacks.  Thanks for nothin, Ami (please don't actually bring me snacks right now!  We have SO much food!  And my main snack of choice is peanut butter toast.  Mmmmm.)  The strangest dream was last night by far.  Some other patient was trying to steal my ice pack off my head!!  His name was Howard and he played some good mind games, trying to get me to get up for snacks so he could steal my ice.  You'd think I was starving up in these parts.  I promise you I'm eating plenty and well.  Lots of protein, too.