Wednesday, September 11, 2019


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 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

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.   

Tuesday, July 2, 2019

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.  

Friday, May 31, 2019

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!  

Friday, May 24, 2019

Pearl does not exist

So, today's scan confirmed, beyond a doubt, what has been suspected:  my unwelcome brain tumor, named Lloyd, is indeed growing.  It was noticably bigger in the past 6 weeks since the last scan, and if you line up the same cross section from a whole bunch of scans you can see that it is clearly getting bigger over time, since before whole-brain radiation.

We still don't have a firm plan for the next steps.  BUT some things are in motion.

I really don't want to go to Florida for brain surgery.  I think it would be a very inconsiderate choice for my family.  What if I don't wake up?  Or am incapacitated such that I can't return to our Midwestern home for months?  Does the family move to Florida?  That would be terrible.  SO, I had a top secret consultation with my original Dr. Brain Surgeon, to ask him questions about the surgical risks and options now that all non-surgical options have been explored.  Just the spouse and I went, thanks to my amazing MIL for taking the girls for a sleepover and bringing them to school that morning.  Dr. Brain Surgeon is also Prof. Department Chair of Neurosurgery.  He said, I have a guy in my department who is an expert in deep-seated brain tumor surgery.  Can you wait an hour and a half to consult with him when he gets out of surgery?  We said of course!  So, we got some coffee and visited the medical museum while we waited. 
iron lung.  Thank you, polio vaccine, for making this machine museum material!!
Dr. Deep-Seated Tumor Neurosurgeon was awesome!  He apologized for making us wait, and we tried to thank him for working us into his schedule on what was clearly an operating room day for him and not a day in the clinic.  He came to us from a brain surgery, and when we left he was proceeding to another brain surgery!  Bonus was that he had heard of Dr. Florida Neurosurgeon and says that he uses the same technology (BrainPath).  And he was confident that he could remove 90-95% of Lloyd if that is what we decide to do.  One of our questions was if that was enough.  As in, how much time will I have, and what quality of life will I have if I do/don't do surgery?  Because I'm willing to go out with Lloyd gracefully if the risks outweigh the benefits of surgery.  We just aren't sure yet.  The main long-term risk of Lloyd removal include loss of function of the left side of my body, the main short term risk of Lloyd removal is fluid build up in the cavity left by Lloyd's removal.  Dr. D-STN would install a short-term drainage tube should this happen (sounds horrible!!). 

Dr. SRS Expert Radiation Oncologist said that if Dr. Deep-Seated Tumor Neurosurgeon can get out 90-95% of Lloyd, he can give any remaining pieces targeted radiation.  This was very good news!  Because one of the things about surgery is that they can never get all of it, and surgery is usually followed up with some other treatment.  So I was excited that, although I previously understood that the region can't have more radiation, if the region to be targeted is smaller then yes in fact I can have more radiation.  Also, these doctors are going to bring my case to their institution's tumor board on Tuesday to discuss the best course of action with all of the cancer experts at the institution.  So, I'm in really good hands guys.  

Only other thing is that Carnation Nation has struck again!  The sister of one of my dearest friends from grad school, K, emailed me to tell me that a new immunotherapy called CAR-T has just opened a clinical trial for patients with Her2+ brain metastases.  I've tried to call the hotline and get information but just get voicemail.  And I'm too tired to put all of the right links here for you guys to learn about this...I'll get em in my next post.  But suffice it to say that CAR-T involves harvesting some of your body's own immune cells, (specifically T-cells), probably and hopefully from a blood sample, and engineering them to attack the cancer cells in your body.  I SO hope I qualify for the trial!  I'll be my own GMO!!  Thank you so much, A, sister of K, for telling me about this trial!!


Friday, May 10, 2019

Roller coastering

Okay!  I finally have an appointment at the Mayo Clinic, but not the close one in MN.  At the Mayo Clinic in Jacksonville, Florida!  Long story of roller coastering between phone calls with incremental updates.  I'll try to be brief.  

So, you'll recall from my previous post that the current situation is that the docs think that Lloyd is not quite dead.  I'm not yet all in on that conclusion, because the conclusion seems to change from scan to scan.  One scan is all high fives, tumor is dead!  And the next scan is all heavy hearts, Heather your big ass boob of a brain tumor might be yet alive in a small piece of itself.  I have another scan on May 24th, and from that it might be more conclusive if it is indeed bigger, and where it's bigger, and how quickly it's growing, etc.  In the meantime, I've gone up to 3 mgs of steroids per day, and I'm much more comfortable, and I'm hoping that being on more steroids will also help the outcome of the scan.  As in, maybe my swelling will be less, and so Lloyd will be less aggravated and look more Pearl-like.  It's all about appearances.  We need a Pearl-like image, not a Lloyd-like image!  

In the meantime, I have been working on a referral to the Mayo clinic in Rochester, MN, to see if they have any additional treatments to offer me.  My entire medical record was sent up there last week. The nicest person, Ann, called me with some questions, because my record is so lengthy that they were having trouble getting the chronology right.  She asked what my current problem is?  Lung metastases or something else?  I was glad to say that the lung metastases are all gone, but I was troubled that they seemed to have missed the point that I have an enormous and ongoing brain tumor!  After I answered her questions it seemed like we were all on the same page in regards to the purpose of the referral--what can you do about Lloyd?  Then the Mayo Radiation Oncology Docs reviewed my case for a few days.  Unfortunately when Ann called me back, she said that they determined that they had no further treatments to offer me.  They agreed with my local Dr. Rad Onc that I've received too much radiation to the region already.  BOO!  BUT they gave me a twinkle of hope; they referred my records to the Mayo Neurosurgery department to see if I was a candidate for this new surgical treatment called LITT (Laser Interstitial Thermal Therapy).  Apparently it's a minimally invasive procedure whereby the surgeons implant a little thing in the tumor that emits heat and cooks the tumor dead.  I was super excited for about a day, until Ann called me back to say that the Mayo NeuroSurg team determined I'm not a candidate for LITT because Lloyd is too big!  Ann is so sweet--she sounded like she wanted to reach through the phone and yank Lloyd out of my head for me.  She was very empathetic about the news that Mayo MN was not going to help me in any way. 

Before Ann hung up the phone, I said hold on hold on hold on!  My sister (Holly the Hero, mother of Calvin the Cure) found a surgeon at the Mayo clinic in Jacksonville, Florida, who has developed a new technology to remove deep-seated brain tumors such as Lloyd.  I asked if anyone in the Mayo MN Neurosurgery department knew about this or could do it.  Ann took this comment back to the doctors, who then referred me to this NeuroSurgeon at Mayo in Florida.  The NeuroSurgeon in Florida has already reviewed my records and thinks I'm a candidate for his procedure.  So now I have an appointment in Florida in mid-June to discuss a possible Lloyd removal option.  Not sure yet if I'm actually going to go, but I have the appointment if I need it.  It was funny making the appointment, "Are mornings or afternoons better for you", "Well, I haven't looked at flights yet, so who knows."  Here is a news article about his technology  My understanding of what's special about their procedure that they use pliable instruments instead of metal instruments and then follow the natural paths of tissues in the brain, instead of just jamming through the most direct route to the target and damaging tissues along the way.  The doctor I have an appointment to see just published a scientific article showing pretty darn good outcomes     Conclusion: (pasted from the article linked in the previous sentence) This minimally invasive approach can be used to achieve extensive resection with minimal morbidity for arguably the highest risk metastatic brain tumors. So, I'm still on the roller coaster ride (somewhere).

As I've been thanking Holly almost daily for finding this possible treatment for my Lloyd problem, she sent me the most hilarious message.  It's a quote from the movie Billy Madison, which was a family favorite when we were teenagers.  

Woah woah woah Miss Lippy!  The part of the story I don't like is that little boy gave up looking for Happy [the lost dog] after an hour.  He didn't put up posters or anything.  He sat on the porch like a goon and waited.  That little boy got to think:  you got a pet.  You got a responsibility.  If your dog gets lost you don't just look for an hour and call it quits.  You get your ass out there and you find that f****** dog!    

Holly, I deeply thank you for your hours of hard work "hanging up posters" and getting your "ass out there" for your lost dog and big sis. <3  At the present moment, your research has turned up the best option I have!  But I'm yet holding out hope for a Pearlish result on the next scan, however unlikely that may be. 

Russ and his Roller coaster Ride with Rainbow the Rooster

One more roller coaster story for you, and some of you may have heard this story in person because I've gotten a lot of mileage out of this great tale.  This roller coaster is about my dad, Russ, and his Rooster named Rainbow.  My dad told me this story over our lunch date at my last MRI appointment, and I thought I was going to die laughing.  Russ is mild-mannered, no-nonsense backyard chicken guy, with about a dozen chickens in his flock at any one time (until the fox or coyotes or raccoons disappear some into the woods).  Well, the last time he restocked, he accidentally ended up with one rooster.  He kept the rooster, which is a beautiful bird, and the grandkids named it Rainbow because its feathers are much more colorful than the hens.  Well, Rainbow was a delightful family member for the first few months, crowing pleasantly in the morning and participating in normal free-range flock activities, such as pecking in the garden, or romping with the dogs and cats.  But then Rainbow hit puberty and charged my dad.  Several times, perhaps, I guess?  Well, my dad was having none of that!  What if Rainbow were to attack a grandkid?  So Russ decided to teach Rainbow a lesson.  He marched into the house and put Rainbow up for sale on Craigslist!  It was time for Rainbow to go. 

But I'm delighted to report that after a few days had passed, Russ and Rainbow worked out their differences!  Rainbow started behaving like a perfect gentleman and even let Russ pick him up on occasion.  So Russ removed Rainbow's listing from Craigslist.  Apparently Rainbow has been well-behaved ever since, and Russ has sworn to never put him on Craigslist again.  Rainbow remains a member of the flock for now!  Although Russ continually questions if Rainbow's incessant crowing annoys the neighbors or not.  Rainbow is a vocal rooster! 
The moral of the story is...don't misbehave at Grandpa Russ's house!  He'll try to unload you on Craigslist!   

Wednesday, May 1, 2019


Quite a bit has happened since my last post, but also nothing at all.  The full radiology report of my previous brain MRI scan was released the day after I blogged, and I have since visited with both Dr. Radiation Oncologist and Dr. Medical Oncologist.  The full radiology report said that my scan result was consistent with "disease progression".  This is because in addition to the swelling, Lloyd has a corner with increased blood flow.  But there is still uncertainty about what's going on in there because the increased blood flow is not associated with increased thickness or other signs of growth.  SO, we're consulting with experts as if Lloyd is still growing, but we're not rushing into any treatments or decisions.  I'm having another scan on May 24th, to see if it is more definitive or if Lloyd has changed in the 6 weeks between scans.  That would be informative.   

Next step:  get a referral to another medical facility, the Mayo Clinic up in Rochester, MN.  This is because Dr. Radiation Oncologist says he can't give me any further electron-mediated radiation to the site of Lloyd.  The risks to my healthy brain are too great.  But he said that his colleagues at Mayo Clinic have a photon radiation that might work for me.  Apparently we have more ways to control photons than electrons, so the photon radiation can be more finely tuned and will not cause as much collateral damage.  So, I'm somewhere in the process of pursuing that appointment in the next two weeks (hopefully I can get in before the next brain scan).  

Next step:  meet with Dr. Brain Surgeon again, see if he's got any news or ideas.  My sister found a news article about a doctor at the Mayo clinic in Florida who developed a new surgical tool/method to remove deep-seated brain tumors such as mine.  I'm not booking tickets to Florida or anything, but I do think it's worth discussing as Lloyd continues to be undead!  

Next step:  book an additional family vacation.  I've already made arrangements for us to go to the Black Hills (i.e. Mt. Rushmore, etc.) in August, but if Lloyd is undead this seems like too long to wait.  So my genius spouse said, how about we take two vacations?  YES.  YES.  That is a WAY better idea than the hassle of rebooking!!  My brother and his wife just bought a new house (they haven't even moved in yet, lol), so we might go to Seattle and bother them for a week.  We can help unpack!  Or cook your meals while you unpack!  Additional motivation for vacation #2 is my dear friend, G, who passed away last week from metastatic breast cancer.  I've gotta make the most of the days that I have!  We all do, really. 

ALSO, I've increased my steroid dose to 3 mgs per day and am much more comfortable on most days.  I guess I didn't even realize how uncomfortable I'd gotten!  But my head is feeling a touch better, so thank you, steroids.  

ALSO, we have some fun projects going on!  The spouse demolished the old wooden and somewhat rotten shed, and has ordered a new 10 x 20 shed!  It's basically a small house!  We don't have a garage, so we're super excited about this extra storage and work space.  It has two lofts in it, so the kids are hopeful for a play area.  My best friend growing up had a play area in the loft in her garage.  I always wanted to play up there!  But it was prohibitively hot most of the time.  

My project is that I'm painting the upstairs bathroom.  It's merely halfway done, but the girls enjoy helping me.  One more afternoon of good energy and it'll be done!  I picked a shade of blue that was recommended as inspiring "serenity".  I was a little worried it'd look like that country blue from the 90's, but that is not at all the case!  On the wall, it has a pleasant greenishness to it.  Huzzah!  
Image result for valspar blue tea

A few more pics from our joyous spring break trip to Santa Fe!  I failed to get them to post in order, but I think it won't trouble us too much. 

My stepdad is a professional oil painter (artist), and his art studio is attached to his home.  He graciously shared his materials and expertise for a few hours of painting.  E was calling herself "Mona Lisa #2" as she posed for a portrait painted by A.  E was very patient and only got up for 2 breaks.   

Portrait is coming along nicely!

This is right outside their backyard, rural Santa Fe, NM.  Hiking to the arroyo (dry creek bed).

On our hike to the arroyo.

Also on our hike to the arroyo

Before we went to Santa Fe, we stopped at the Great Sand Dunes National Park.  The dunes are shown here as the gray material between the greenery on the bottom and the mountains in the background. 

My spouse turned into a little kid at the sand dunes!  He took off with his sand sled, heading for the tallest dune within reach, and we didn't see him for 20 minutes.  He came back to us looking like this.  Ha! 

The family, holding our rented sand sleds.  The park does not rent the sleds in the off season; you have to plan ahead and rent sleds from a nearby outfitter. It was such a beautiful day to visit this park, sunny and not too hot or cold.  

The beautiful snow made for wet sand, and wet sand is not good sledding sand.  Here is E struggling back up a dune.  She had a blast!  Said she felt like a fairy in a sandbox. <3

Friday, April 12, 2019


Well, in the car I was telling dad how I'm trying to get out of the habit of ascribing either a positive or negative value to these darn scans.  It's just data, and in this case it truly is neither good nor bad.  It's just more of the same, and I'm fine with that.  1) no new tumors!, 2) I'm comfortable and I'm not having debilitating side effects!, 3) my brain swelling is increased (in other words, worse, but I said I wasn't going to use a word like that), 4) Lloyd is still there, obviously.

So what do we do about the dang swelling?  Same as always...increase the dang steroid dose again.  Dr. SRS Expert suggested 2 mgs in the morning and 2 mgs in the evening.  I countered, could we just try 2 mgs in the morning, since I'm not having seizures, etc., and this is just a preventative thing...?  He said that that's fine.  SO, hbomb continues to over-achieve at swelling and under-achieve at getting off the steroids.

Although I'm not having terrible side effects, in hindsight I think I can tell that I have brain swelling.  When I stand up too quickly, my head starts to throb.  And my ear still feels pressure-y, it's never gotten better.  And I don't know if or how this relates, but my jaw has been sore lately.  A short list of things that are hardly worth complaining about, but perhaps are indicative of that which I cannot see. Otherwise and thankfully, my body isn't giving me much information about how much swelling is going on in there.  Quality of life = high.

Well, I was going to delight you with more spring break photos, but technology is failing. time!  Thank you for your support, dear ones!  Have a swell weekend!

Wednesday, April 3, 2019

Pretty awesome!!

Who has a blog?  Me?  I have a blog?  Huh.  But there's all of these other ways I like to spend my time, too.  Well, that doesn't mean that you no longer have a blog, hbomb!!

I apologize for the delay, Carnation Nation!  Suffice it to say that I am rocking it in all sorts of dimensions.

And I do have several (small) recovery updates for you.

First, the never-ending drama with the steroids.  I have stepped down to a mere 1 milligram (mg) of dexamethasone per day.  I am very proud of this, and I am very physically comfortable at this dose.  I tried 0.5 mgs per day for a week, and felt moderately awful.  Headaches and nausea, which could mean either brain swelling OR discomfort due to underperforming adrenal glands.  I don't know how I'm to tell the difference!  So I bounced my dose back up to 1 mg.  Talked to Dr. Oncologist about this, and she said it's still too high of a dose for my adrenal glands to start making my own steroids, so I do need to come down/off eventually.  But I have an MRI next week (Friday the 12th)!  So she agreed that I could hold at this dose until after the MRI.  Huzzah for comfort and ease in the meantime!

Second, I have been soooo fortunate to be one of (what seems to be relatively few) chronically ill patients that had never had a problem with her health insurance.  Well, my health insurance, which has been awesome for a decade and has not denied a thing that I've needed to survive, denied my oral chemotherapy for 2019.  Turns out that this type of thing happens so frequently to so many patients that my cancer center employs a person who's entire job it is to find a way to get the needed care (this person even crafted the refutation and submitted it to my insurance company on my behalf.  Insurance denied it a second time.  SO this dedicated person contacted the drug company directly and somehow they agreed to give me the drug for free for a year.  My chemo shipment arrived at my house the day after I ran out of the pills from my previously insurance-approved prescription.  High drama! 

More drama:  The literature that came with the chemo shipment from the drug company was slightly different from the literature I had received from the previous pharmacy.  SO, I read it.  And in my reading of this new literature I discovered something:  my chemo, Nerlynx, interacts with another drug that I have been taking allllll year, Zantac.  (I've been taking the Zantac to prevent ulcers that would be caused by the steroid.  You might be asking, but Heather, why did no one mention the interaction between Zantac and Nerlynx previously?  Well, according to this literature, Nerlynx interacts with too many drugs for them to list them all on the paper.  They just happened to choose Zantac as one of the top 6 to highlight, so I got lucky in my reading.  But yea, it definitely seems as though my original Nerlynx pharmacist should have caught this months ago).  GUYS, I think that this is why I have not had the terrible diarrhea that is supposed to be caused by the Nerlynx (thanks, Zantac!).  My guts are not in fact a medical marvel.  So, this new-to-me literature said that if you must take Zantac, take it 10 hours before Nerlynx or 2 hours after Nerlynx or both.  Following these instructions does in fact allow my body to produce the famous watery side-effect of Nerlynx.  But it's not daily or constant, so perhaps my guts are indeed special.  I do think it's better (less watery diarrhea) if I eat oatmeal for breakfast (I know who's not surprised by this result--Dr. JT, PhD).  But this is just a guess right now, not rigorously tested.  But you'd be hard pressed to get me to eat anything other than oatmeal for breakfast now that I've got this notion in my head, so this hypothesis may never get tested.

I've been working!  Not quite full time hours, but I'm creeping closer and closer.  Still get quite fatigued and need lots of sleep at night, but it's getting better!  And everyone needs good sleep at night.  Occassional naps are not denied. 

Other news:  my hair has started to grow back in places.  I still have baldish-spots.  I say ish because there are light (not gray, I don't think!) thin hairs in the bald spots that never fell out, and I think that those hairs are growing.  But my dark brown hairs are the ones that did the falling out, and those are growing back in some places better than others.  It looks sort of ridiculous right now, but I'm not terribly concerned.  I greatly enjoy rubbing my head, and not having to do my hair in the morning (not that I ever did anything in particular with it).  As promised by Dr. Radiation Oncologist, I do have a reverse mohawk.  The biggest baldish spot is a short stripe down the middle of my head.   

More drama:  We took a road trip to Santa Fe for spring break in March, to visit my mom.  It was such a fantastic trip!  But it started out with lots of weather drama that caused some spontaneous re-routing.  I had deep gratitude for my reliable vehicle and my fully charged smartphone on this trip!

Here's the weather drama that tried to thwart our trip:

The eye of that storm is pretty much where we were trying to get to:  Colorado Springs, for a reservation at the kid hotel paradise at the Great Wolf Lodge.  BUT...

Seriously.  I-80 out of Nebraska was closed, I-70 out of Kansas was closed, and all of the highways leading into Colorado springs were closed.

screenshot of Nebraska 511 that evening.  Poor Nebraskans!  And parts of Nebraska and Iowa are still under water from the flooding that this storm caused.  
So, we managed to cancel our Great Wolf Lodge reservation (shoutout to the amazing customer service at Expedia!!  You wouldn't think so, but it's true!), spent an unplanned night in Lincoln, NE, and an unplanned night in Burlington, CO, then proceeded to vacation in southern Colorado (because by then the snow had almost completely melted).  Drama!

Our first vacation item of business was the Royal Gorge.

The family on the complimentary gondola ride across the gorge, approximately 955 feet above the Arkansas River.  Well, included in the somewhat steep cost of admission, so it's not truly complimentary, but you know.

Looking down into the gorge from the gondola.

Ian and Azalea zip lining across the gorge (they're not over the gorge yet in this photo)!  Poor Eleanor wanted to do it, but you have to weigh 100 pounds and be ten years old.  She's not quite either of those things.  

Wednesday, January 30, 2019

Joyful \(*>*)/

Overall, government shutdown notwithstanding, January was an excellent month.  I felt better than I'd felt since May!  You hear that mom, I used the word BETTER!  It was exhilarating to think about others and spend a bit of energy making others happy rather than being so darn self-focused.  My neighbor and friend had a baby (Congratulations, K family!) so I made them some treats and held the baby for an entire afternoon.  Also, the girls and I hosted my friend M, her two daughters, Aunt J, and my MIL for a spa and spaghetti night.  AND I made an escape room activity for my kids and two of their friends.  My friend, A, helped me with it and it was awesome.  The theme was a trip to Paris, and their plane crashed just off the Canary Islands.  While they were stranded on the Canaries, Mt Teide erupted (baking soda and vinegar experiment).  When they finally made it to Paris they visited the Louvre and Champs de Elysees.  They had numerous puzzles to solve along the way.  It took them an hour to complete the "escape room". 

And then...a minor setback!  Last week I either ate something bad or picked up a stomach bug.  Regardless of the cause, the result was mild dehydration, which of course led to dizzy spells.  I've been rocking the BRAT diet to try and get things back in order.  It has been harder than it sounds, likely because of all of the fancy pills I take every day (neratinib, roids, antibiotics, etc.).  And now today I have a sore throat and a cough!  Bummer.  These ordinary ailments have me zapped.  But I'm getting plenty of fluids and rest, so hopefully I'll kick em soon. 

I saw Dr. Radiation Oncologist last week.  He too was delighted with the January MRI of my brain.  Oh, and when I saw Dr. Oncologist earlier this month, she skipped into the exam room and invented a word.  She said that this was the "bestest" news she's had for me all year.  So guys, whole brain radiation worked for me!!  I asked Dr. Radiation Oncologist to explain what is so great about this result.  He said the perfusion (blood flow) to the tumor is significantly decreased, and the diffusion (area of the tumor) is not increased.  Hopefully it stays that way for awhile! 

Today is a polar vortex day!  Feels like -37F outside with the windchill.  Schools are closed and folks are advised to stay indoors.  Ok!   

Thursday, January 3, 2019

Nearly jubilant

It was a good but tiring day today!  The spouse and I hit the road after he walked the girls to school, we listened to comedy downloaded from Spotify, and ate brunch in the distant town before the appointments started.

The MRI of my brain went off without a hitch.  At first it looked like the phlebotomist was going to have trouble finding a vein for injecting the contrast, but then he switched arms and had no troubles.  Usually I like a silent scan, but this time I opted for music in my headphones.  Adele set Fire to the Rain, and I don't remember what other songs played but the scan only lasted about 5-6 songs.

Then we trekked through the hospital to get the results from Dr. SRS Expert.  First his two new residents came in, and it was apparent that they were new.  The previous resident we'd interacted with was a senior resident, and these residents were...whew.  Brand new, perhaps.  Not on top of their game today, and indeed put us off of our game a little bit.  They came in making excuses about having gone into the wrong room first (something about going into a room with Dr. Allen instead of Mrs. Allen...I decided not to confuse them further by pointing out to them that I'm both) and in their blustering failed to introduce themselves.  Then they asked me a lot of questions about how I'm doing, and suggested that maybe my ear fullness is due to the common cold?  But I don't have a cold!  Then they pulled up the pictures and were excited to share the "good news" with me but didn't really explain the good news.  Fortunately Dr. SRS Expert wasn't long behind them, and he too was very optimistic about the results of the scan.  As with previous scans, the good news is in what ISN'T there--no new tumors.  I'm getting the feeling that this is an atypical result!  He was nearly jubilant about this.  I must be sure not to take this for granted, even though it is clearly my expectation that I will not sprout more tumors (we've done radiation twice, I'm taking neratinib, and I have no cancer elsewhere).  And really, if Dr. SRS Expert is pleased with the results, then that's all there is, there isn't anymore.  It sucks to leave the exam room on a note of ambiguity, which is what we did last time.  The next scan is not until April.

The additional good news is that Lloyd is not bigger, and is in fact smaller in important ways.  The part of Lloyd that was growing looked kinda like a tail, and that tail is much reduced.  It's more of a nubbin now, not tail like at all.  So...whole brain radiation did its job!  Huzzah!  (We don't yet have the blood flow (perfusion) results, but unlike previously, Dr. SRS Expert didn't hold back his interpretations.  I'm not sure why.)

Neutral news that is not surprising is that my brain swelling is unchanged.  I updated him on my steroid status and said that my head is feeling halfway decent lately, and he said something about the steroid dose being pretty good for now then.  I just reduced the dose a few days ago, so I'll hold here for a week or so then try to cut another half a milligram.  Maybe I won't be able to get off of them completely, but I'll keep trying.  I'll just listen to my head.

We briefly discussed the fatigue, and he said that it could continue for up to 6 months, but then he pointed out that I'm young so maybe not quite so long.  I countered that I'm almost 40!  But I was joking; I know that I'm young, and I also know from previous cancer treatments that yes the fatigue will linger, possibly for up to a year, but it will get easier here pretty soon.  Eventually it'll shift away from all-day fatigue and into a type of fatigue that allows for more functions but makes my days shorter and my nights longer.  That'll be easier for this wife/mom/daughter/sister/friend/scientist to work with.  Right now I'm still pretty darn tired all darn day!  And even if I start out with some energy, I'm easily depleted after a little exercise or family time.  But I'll take it!  I'm living with cancer, not dying from it.  I feel like I'm doing pretty awesome, in the scheme of things, in my slow and nappy way.  Thank you all for being patient with me!

Puerto Rican rainbow, somewhere in this picture (sadly it's not showing up on my computer screen, but I can see it on my phone screen).  My friends S&B are in Puerto Rico now, and my Dad and bonus mom are headed to the Dominican Republic tomorrow.  Enjoy the beach, lovies!!!