Wednesday, September 11, 2019

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Image result for air recycler button automobile
leftmost button shown is called the fart recycler
I am so grateful to tons of friends and family for looking out for me so closely.  As I recovered from eyebrow craniotomy, my mother in law arranged for daily visitors for me.  One day very near labor day, my lunch visitor (Ami, of dream-snack denier fame) arrived to find me doing poorly.  She had to call 911 on me, I don't remember the events that followed (thank goodness!), but it was concluded that I had cerebral spinal fluid built up in my brain.  I got an ambulance ride to Iowa City and had a temporary emergency brain drain installed: commercial break:  cerebrospinal fluid is a beautiful yellow color with a touch of greenish (not unlike a lemon lime pop).  A few days later, my amazing surgeon and his team of residents (I called them my flock of seagulls) installed a permanent ventricle shunt.  It drains the fluid into my peritoneal
(belly) cavity.  My kids call it my fluid recycler, kinda like the fart recycler button in your car.  It's magnet controlled. My head is half shaved and I have several sets of stitches.  They come out on the 16th.  I look like a character out of the movie Trainspotting, except with better teeth. 

After a week long stay at University of Iowa Hospitals and clinics, I was discharged to Acute Rehab in my hometown hospital.  This was a great place to recuperate.  I just got sent home today.  Things that are getting better but still have room for improvement:  my endurance, my short-term memory, my strength, my distractability.  I tell you what, brain surgery doesn't get any less exhausting the more often you do it. 

Friday, August 16, 2019

Radiation was actually lovely!

 (I actually started this post in a timely manner last week but kept getting interrupted.  So, please accept this delayed update about the mechanics of radiation rather than how I'm doing.)  Cyber Knife Radiation is done already.  Every day for 5 days(last Wed of July-the following Tuesday) and it went pretty quickly because of all of the terrific company.  Some people who care very much about me thought that it would be a lot for me to ride back and forth to Iowa City for the treatments each day, so those same people got me a really nice hotel room with two beds so that myself and a helper could stay over there.  I came home for the weekend and am deeply grateful for the nights in Iowa City.  Another thing that made the daily radiation do-able was that daily patients get free valet parking (!).  I deeply enjoyed quality time with these folks who so generously gave of their time and energy to keep me fed and take me to all of the radiation appointments.  I did something special with all of them. Martha and I tried a new lunch spot, to great success.  Uncle Rod took me up to the Coralville reservoir, where the floods of '93 and '08 had washed away the soil down to the bedrock, revealing a Devonian fossil gorge.  I couldn't navigate down into the Gorge with my walker, so I just stayed by the fountain reading the display.  It was nice to stand in the sunshine.  We also went out for Indian buffet, which was special for him because he's the only one in his family who likes it so he never gets it (I love Indian buffet).

My next comrade was dear old dad, and we had some shenanigans.  He was my buddy on the last day of radiation, and I was feeling mildly celebratory.  After a late breakfast at the Hamburg Inn #2, we stuck out on the interstate toward home.  But it was SUCH a gorgeous day!  So I suggested that we swing by the Neal Smith Wildlife Refuge and check it out.  It was only about 30 minutes out of our way.  It was a terrific choice!  All sorts of summer prairie flowers were in bloom, accompanied by hundreds of butterflies!  Also, they had an electric scooter available for patrons and a paved 1 mile hiking trail.  So I was able to enjoy a short hike, too.  Then we took the Auto tour in search of the buffalo herd.  We found them, hunkered down in a shady spot.  Didn't see the elk, though.  Then we were thirsty and hungry for a snack.  So we drove through Prairie City and got some treats at Goldies ice cream shop. I have aged out of the ability to eat dairy ice cream, so I had a big lemonade and a slice of strawberry rhubarb pie.  Sugar Rush!

Sunday, August 4, 2019

Bye Neil, and take Lloyd with you!!!

I have been a busy patient this past week! I saw Dr. Deep-Seated Tumor Neurosurgeon's residents.  I wanted someone to see my goose egg and determine if it was normal.  The resident said to keep wrapping my head in Coban until it stops popping out, and that he expects it to heal within another two weeks.  Sure enough, I seem to have made good healing progress this week and my bone hole goose egg hasn't popped out in about three days.

On that same day I saw Dr. SRS Expert to make a plan for radiation. The simple part:  Neil could be treated with a single dose of CyberKnife SRS radiation.  That was done on Wednesday.  The rather sad part:  Remember that Dr. DSTNeurosurgeon removed 95% of Lloyd?  Well, the remaining 5% is not just a tumor tidbit at the back corner.  The remaining tumor includes the tidbit as well as what looks to me like a shoreline of cancer around the blackness that is the Void left by Lloyd.  Dr. SRS Expert said that the best way to treat this shoreline would be 5 consecutive days of radiation.  I have now completed 3/5 days of this treatment, and won't know for a few months how well it worked.  Just like all of my previous radiation treatments, we'll rely on CT or MRI scans 3 months from now to see how controlled the disease is.  All I can do is remain hopeful.  This is the end of the treatment line.  Always knew there's no cure, just wanting more time.  Even if three months from now the scan shows that the tidbit or shoreline remnants of Lloyd are growing, Dr. SRS Expert said that he doesn't want to irradiate that area any further.   

Needless to say, my bone hole goose egg had popped out by the time this day of appointments was over.  Stressful! 

I've had a song stuck in my head for weeks.  The Void left by Lloyd has been filled with the beat of the Channel One Suite.


Wednesday, July 24, 2019

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!)   

Tuesday, July 23, 2019

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

Monday, July 22, 2019

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. 

Thursday, July 11, 2019

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