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!

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. 

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.   

Pearl Jr.'s birthday has been scheduled!!

What a day!  My heart is so full from all of the great things that went on today.  First of all, it was my daughters' last day of school.  From left to right, last day of 5th and 4th grade.  And it was a beautiful day to walk to school, which was fortunate because we've had rain and storms alllll week.  So grateful to walk on this last day of elementary school for my now-middle-schooler, just like we did on the first day of kindergarten so many years ago.  We have walked every day that the weather has permitted us to do so!  0.7 miles.  My marvelous neighbor, M, and I are a walking school bus! 

It was school spirit day, so they painted their faces with the school colors.  Thor the dog has excellent school spirit--black fur with orange leash.   

Secondly, when I got back to the house after the walk, my phone started ringing, and for once it wasn't a robo-call!  It was Dr. Deep-Seated Tumor Neurosurgeon, personally calling me to chat about things!  WOW!  I was very impressed that he would take the time to do this.  Usually the nurses call, sometimes the schedulers but usually the nurses make the call, answer my questions, then transfer me to the schedulers.  This was Dr. D-STN  himself!  He called to say that the tumor board agrees that surgical removal of the tumor is my best option at this point.  He confirmed that a little bit of Lloyd will remain in there, and that Dr. Radiation Oncologist has a plan to blast it with a CyberKnife (I don't know anything about this yet, and google is yielding too many answers at this moment so I'll wait until I've had a chance to ask my questions then blog it up).  He also told me a bit more about the surgery:  He'll just make a small incision in my right eyebrow: eyebrow craniotomy is what it's called.  That's it!  So I haven't read this yet, but here's what I think is a reputable a link from Johns Hopkins to information about the eyebrow craniotomy procedure.  I don't plan to read it until after the procedure.  Dr. D-STN said that the main side effects include black eye, possible eye swelling, and possible eyebrow disability for 3 months.  Most patients recover full range of eyebrow mobility by that time, which is heartening because my right eyebrow is the one with enhanced abilities!  It's the one I can raise by itself!  Eyebrow joking aside, guess how long my anticipated hospital stay is....?  You'll never guess.  Two days!  He said I'll be up and walking the SAME DAY, and in the hospital a mere 2 days, (he mostly said two days, but the range he eventually gave was 2-5 days.  He said if my eye swells shut I won't be discharged until it opens.  And I seem to be a super sweller!  So we'll see.  Also, if I experience any of that left-side paralysis business that would extend my stay as well, into some sort of inpatient physical therapy.)  The picture he painted very much put me at ease.  Of course it's a big deal, but this sounds super manageable!!  

I think I'm going to refrain from putting the surgery date on the blog, because everyone wants to be soooo helpful but sometimes we are overwhelmed by the outpouring from Carnation Nation!  My goal by keeping the date private is to allow my kids the space to deal with all of this as they will, with the people they are closest to, without me inadvertently creating a circus while I'm in the hospital.  You can expect that the deed will be done by the close of June, and if you need to know the date you will be communicated the date.  When I come out the other side with my wits about me, one of the first things I'm gonna want to do is blog it up!  Because that's the way I roll. 

In regards to CAR-T, I finally got through the new patient hotline, and someone emailed me instead of calling, which was very nice.  Also, I discussed this CAR-T Her2+ brain metastasis clinical trial opportunity with Dr. Oncologist, and she wasn't too excited about it.  She said that the side effects of CAR-T can be pretty nasty.  I read about them, and I thought that they didn't sound too bad compared to dying of metastatic breast cancer.  BUT her main point is that I don't have cancer anywhere else, just the one brain met, so if we can get it under control with surgery and follow-up radiation, that's still my best option.  Plus, the CAR-T Her2+ trial is phase 1, so that is not very far along.  Phase 1 trials are toxicity trials.  SO, CAR-T Her2+ brain met trial is not on the table for hbomb at this point in time.  And that's fine with me!  The location of the trial is in California at the City of Hope medical center. So that would have been another issue, too.  One less thing to stress about!!

Thirdly, summer vacation #1 will commence very soon, and will occur before Pearl Jr.'s birthday/Lloyd's death day.  We're coming for you, brother!