Wanted: One Brain Cancer Sherpa

I'm going to start this blog post with one of my favorite teaching jokes;

I've told this one many times, and it's funny, but true.

Lots of people learn things in a different ways, and I used to tell this to my students. When they had that panicked expression in math class, that "I don't get it!"  look, I would remind them that it was MY job to help them "get it", and if they weren't getting it, I need to try some other way to teach it. And passing out papers or quizzes, an F is not for "failure". It's feedback that we need to try some other way to learn something.

Some learners are auditory, others are more visual, etc. And the brain learns thing best by connecting it to something it already knows. LIke the ABC song, for instance. I have heard that the Japanese have a song for teaching the multiplication tables similar to that. I don't speak Japanese, nor have I ever been there, so I have no confirmation. It would be great if we had that for English, too, huh? Anyway, that's why teachers use music or analogies to connect new learning to what your brain can "hook" to that.

I wanted to try to write to you all about how Steven and I have gotten through all the decisions about my treatment plan with our medical team...I thought before I was fully awake about writing a song to the tune "Purple Rain"...starting "G=B=M, G-B-M..." But after I was more awake I thought it might be a bad idea...percieved as tasteless and #toosoon? Yea, I know it's too soon. No disrespect! Hey, I was part of the Prince generation - blaring his music in our dorm rooms and dancing around like maniacs. (although, I think Prince was so cool, he'd appreciate the effort.)

R.I.P. Prince.

So, I'll go with an analogy instead...
Here we are in our situation right now:
Last MRI has shown disease progression after a string of clean, stable MRI's. (the primary site is still looking stable, BTW). So, we're facing the decision making of options for treatment presented to us.

I began to think of a possible analogy...here's what I came up with:

Imagine Steven and I are hiking on a beautiful trail. All around us, there are beautiful things to see and hear - wind rustling the leaves above our heads ... occasionally, 'rounding  a corner, viewpoints to look out all the way in the horizon and seeing green, green mountaintops and valleys...

and we gather our things and leisurely continue our hike,pointing out to each other bright yellow  wildflowers just off the trail, ..And just feeling peaceful and calm.Sometimes just enjoying chitchatting, other times no talking, just enjoying each other's company.

But the wind kept getting stronger, and if we looked up into the sky, we could see dark clouds starting to move in over us. It started to rain. At first, it's no problem. Little drip-drop-drip...we stopped for a minute on the side of the trail, and pulled our rain gear out of our packs because we're prepared. You never know, but sometimes, it just starts raining in the middle of a hike. NO biggie.

Then the wind started to pick up. And the sky became ominously dark. It's like we were hiking in the night. But again, we stop and pull out our headlamps so we can still see in front of us on the trail. No more chattering and joking around. But it's not altogether unpleasant. The smells of the wet bark and dirt of the trail are different than before.
The rain is coming down harder and harder

 We can hear water rushing as we approach a trail crossing. rocks and boulder we have to hop on, leapfrog, to avoid falling into the rushing water. The second crossing, the water has splashed on one of the rocks and Steven sees me starting to wobble on it, reaches out, and grabs me tight, pulling me to the side of the trail, so I don't fall in. Because of the intensity of the storm, it's clear that if we turned around and tried to attempt to go back the other way, we would probably not be able to get back to trailhead with these treacherous conditions.

At each trail crossing, we have to make a decision. And as the conditions worsen, we rely on each other more and more - remembering advice and experience and that "gut feeling" to help guide us to safety... We can't see the end of the trail. We are in the moment, focused on the Now.

It's getting tense. Shouldn't we be close to the destination we'd planned out? Nothing looks familiar to the maps and guide books we looked through so many times before the beginning of this.

And here we are now. We've reached a trail crossing that nobody told us about. No earlier advice, no notes or map. The water seems to be rushing by like a freight train, and we look to each other as we had each other time. "What do you think?" We each say.

Yea.

It's kind of like that.

I'm ready for the rain to stop and the water to dry up some more. Or just find some safe spot for Steven and I to find a place that we could sit on a bench together to rest for a few and then grab ahold of each other's hands and walk out of this shit storm to safety.I think we need a brain cancer sherpa or something. Do they exist? They should.

The One in Which We are Untethered Out from Land

When I was young, I sometimes thought that I was a little playing piece in a humongous world/game and the inhabitants of that world would watch my life and make changes to my destiny, just to see how I would react ...and this was WAYYYY before the movie Truman Show was written and produced, so I would say someone ripped me off and demand royalties or something...but I think many of us had that idea. In fact, I vaguely remember reading and talking about this phenomenon in a philosophy class in college. I think it has an actual name and shit...anyway....I kinda feel like that way lately. Well, let's look at my recent Recurrence that followed a wonderful series of events. <--- click here if you missed that one. But if you want the cliff notes version: blah blah blah...all these wonderful series of events happened and then WHAMMO! after a MRI, I found out my disease was progressing. It was almost like someone was playing with me or something.

This past week, I had another lovely series of events also [not to be ocnfused with the young adult novel Series of Unfortunate Events - that is defnitely NOT a bunch  of lovely series of events. (Talk about truth in advertising!) By the way, I strongly recommend that series for your kids, between about 10 -14 , but it's bleak and dark at times in a Roald Dahl-ish sort of way.)

ANYWAY, my last week had a series of some lovely, lovely bits in it. So many, that I can't even write them all, but for example:
some of our SKW Winery Friends & Family Circle generously offered for us to stay at their beach get-away, where Schmoopy and I were able to stay for  a night and walk along the Pacific Ocean,

Walking to the beach.Not to worry. The temperature was gorgeous, but I'm always a little cold.

hand-in-hand, and, watch the waves crash on the shoreline as a few (crazy) spring breakers actual dipped in that f-f-f-reeeeezing water. {Kiddies: a little lesson: Pacific Ocean - cold,umm....pretty much all the time and Atlantic Ocean - warm and swimmable in March] When we reached the end of our walking trail, Steven exclaimed, "I think this is Rio Del Mar Beach! My grandparents owned a shop right here....called Pixie Plaza...Right about....THERE!" And there was the place, name changed to Pixie Deli, but still kind of a kick, don'tcha think?

That's a good little bit, right?

That weekend, I had my 5K Run, which I have also written about and you can read more about it here<--- or cliff notes version: I felt AWESOME, participating in my first run/race since my diagnosis 19+ month ago!

I've run marathons, half-marathons, 10K's, but this one kicked ass! It was only 3.1 miles, but it was a big "FUCK YOU< CANCER!" that felt so goooooood!

This was some joyous bits right there!

Sunday, most of my kids were be able to drop by on Sunday morning, April was able to make it with our granddaughter, Autumn. What a treat! 

Cuteness alert: Autumn is walking to Grandpa..or....

 and ...a different configuration of our family,  but still would probably be almost a "quorum" dropped by last night for dinner. Happy, Happy, Joy! Joy!

Sun, and vino, and a walk through the vineyard.

I'll stop posting pictures because it would be obnoxious to go and go on...and you've got the point already. This past week was filled with so many "Joyous Bits" and then....

Monday was my visit with UCSF Day, including the first MRI since I've started my new clinical trial.Fasting blood draw (put in the IV then in anticipation of coming back for my infusion, assuming the Dr. gave the okay), MRI, blah, blah, blah, Doctor's visit to review the MRI scan and blood results.

THWUMP! <---Ninja being punched in the stomach again. The words we wanted to hear: "stable" was not uttered. Instead, we heard "progression of disease" and "recurrence". Due to that, I am no longer in the trial.

Some of you may wonder where the "Out from Land" moniker came to our homestead from Steven. It comes from an Emily Dickenson poem:

Exultation is the going

Of an inland soul to sea

Past the houses, past the headlands

Into deep eternity!

Bred as we, among the mountains

Can the sailor understand

The divine intoxication

Of the first league out from land?

― Emily Dickinson

(You'll have to ask the Lit. major for all his connections and meaning.)

When I think about it...I try to visualize us on a ship and picture us looking out at the green, green hills and valleys of vines....like an ocean. If you gaze to the horizon, you can see the sunrise and sunset, but it's magical to be surrounded in this space. Am I lost? Am I lonely? No. There's the horizon and all that between leading us there. And yet we're untethered at the moment.

Maybe you askAm I okay right now? I don't know where we're going next. We have a lot of research and talking,  thinking to do. 

Picture me on the deck of that ship  Listening to the water lap "thwap" thwap" "thwap" against the hull of the ship .- looking out into the horizon for those "joyous bits" in this series of events they call LIFE.

P.S. If there really IS a humongous world where somebody is playing me like I'm a game piece...move on to something new, okay?

The One in Which I Talk About Guilt - Could I or Should I

I recently told y'all that my parents are fucking amazing parents and grandparents (#FAP). If you don't believe me yet, I'll add proof: Nana & Grandpa (my mom and dad) started a tradition with their oldest grandchild to commemorate their high school graduation by taking them on a trip...I mean, a kick ass trip. Like Italy, or Spain, or Australia! My Sara...the "baby" (going to be 22 in July) was late in going on her trip. The problem was 1) she doesn't like flying and 2) she doesn't really have interest in world travel. Go figure! She definitely didn't inherit the genetic characteristic that is so evident in her grandparents and parents...and most of her siblings and cousins! So, everyone has been kind of stumped how to make this trip work. I would say about 6-9 months ago, we came up with a solution: Instead leaving the U.S., they would go to Orlando, Florida and do the theme parks. Oh, and Nana & Grandpa's oldest grandchild, Jessica, lives in Orlando! Bonus! And extra Bonus: I got to accompany her! Whooot!

If you follow the timeline, you know that this decision and the planning and preparation was done long ago - and before my recurrence. At the time, I was so excited! I had gone to Disneyland last year with Steven, but you can never have enough Disney, right? And Orlando has Epcot Center - which I've never been inside, just run past it on the Disney Princess Half Marathon.

Running past Epcot in the Disney Princess Half-Marathon dressed as Merida from Brave 

And, and, and...there is also Harry Potter's Wizarding World!!! Hello!!! We are for sure one of the biggest geeky Potter fan families out there. We, as a family of six, would often buy multiple copies of the latest released book in the series and read non-stop.We sorted ourselves into the Hogwarts houses. (By the way, they all say that I'm a Hufflepuff.)

At Diagon Alley - Me, with all my flare! Including my HuffllePuff beanie, of course!

But the recurrence changed everything for me. I've written already about my anxiety attacks and depression...and the day before our trip was supposed to start, I had a full-blown Anxiety Attack. I didn't think I could make this trip without Steven, my caregiver. My mind was dizzy with "What Ifs". I felt like I was swirling around the plug and going to get sucked in. We scrambled with my parents to arrange to have Steven join us. (Have I mentioned already that my parents are Fucking Amazing? #FAP) And I regained the confidence to board that flight - a red-eye from SFO to Orlando.

I had been right to have trepidation about this trip. By the time we reached the hotel, I was a physical wreck. I thought I'd been beaten with baseball bats. Okay....maybe that's hyperbolic. I felt like I'd been beaten by whiffle ball bats. (Kiddies: Are they still called Wiffle balls? I"m gonna Google that Shit....excuse me...) There ya' go! They even sell them on amazon.com! They don't look very ouchie, but imagine a group of Cross-Fitters whacking the heck out of me for 5-1/2 hours with those.  So, I tucked myself in bed and basically slept all day and all night of my first day on the trip.

And now, I'm going to get to my point. I felt so guilty (when I was awake) because my parents had gone through so so much trouble and this was Sara's trip and we hadn't spent the day frolicking around one of the theme parks. I joke around about my #freepass and #cancercard a lot, but one of the things that also goes along with a debilitating disease is GUILT. New June can not do everything that Old June could do. I know some of you are sitting here, with your jaws a-slack, saying, 'You have Stage IV BRAIN CANCER". DUH! It's not your fault. What a stupid thought that you're feeling guilty. But then there are some of you that have experienced this and know exactly what I'm going through. That's okay. I'm sharing this because I wanted all of you to understand, if possible.

It maybe doesn't make sense, but it's real. We feel guilty. And we second guess ourselves a lot. Let me speak just for myself here. I second guess myself a lot. Is it that I CAN'T do ... or I SHOULDN'T do _________ [fill in the blank] This is a huge distinction for me, I"m a big believer in looking fear in the eye and saying, "BRING IT!" I've accomplished some of my best things in life by pushing past fear: job interviews, a semester living in France - and traveling all around Europe right after graduation from college, with just a backpack, a Eurorail pass and my passport....(I told you we had a genetic Wanderlust in our family.)

And I've thinking about that a lot lately. when do you listen to your inner fear when thinking about whether I should do something just because I could. It's a tough one! One movie scene for some reason keeps going through my head. You watch it quickly here:

If you say that you've never fantasized about a "Towanda moment" yourself, you are a liar. But why don't we do it? Even if we COULD do it? Because we SHOULDN'T do it. It's not about fear. It's about the longer-term ramifications. It might feel (really) good at the moment, but then there's a fall out that's unpleasant or irreparable. So, I balance in my head - and sometimes write it all down on paper - the pros and cons of a decision.

I don't regret at all going on that trip to Orlando - although there were some cons (think: Wiffle Bats), but the Pros were worth it: watching the fireworks at the castle with Sara and Steven, getting my own Hermione wand at Diagon Alley....

My New Hermione's Wand. Does anyone know the spell to get rid of brain cancer? 

And most of all, watching my #F.A.Parents interact and bond with Sara. And you know what? I think everyone came away having a great time. Bottom line is: I had to look at the long-term ramifications (like...my health!). And my guilt was a waste of time. That's easier to say now, but at the time, guilt just pushed its way in like usual.

I have another trip coming upon our calendar for the past year - a winemaker cruise up the Rhone, through the same company we went through last year on the Seine. And I started thinking about flying a red-eye from SFO to Paris and another flight from Paris to Marseilles. We didn't know this when we planned this trip, of course, but I had to change my treatment. Oh, the timing would be different in my treatment: I would have my infusion the day before leaving and have to take my chemo pills the first 5 days of the trip. The sounded like exchanging those Wiffle bats for Louisville Sluggers and have the Home Run Derby happen right there on my body. But there was that persistent guilt bubbling up until Steven and I had a conversation with my neuro-oncologist and we all thought it was in my best interest to skip this trip. This is about my health - my LIFE. The long-term ramifications are definitely NOT worth it. So, I had to give the disappointing news to so many people. And you now what? They understood. No guilt, no more. It was clear that it was the right thing to do.

Okay, so we get to this weekend. One last thing on my Goal board for this month: a 5K right here in Livemore. The last night before the race, Steven had this familiar conversation about "Should I? Could I?" I knew I could do it. I walk/jog with the doggies a lot here in the vineyards, and it was perfectly timed with no treatments sandwiched in to worry about. And I decided that I not only COULD do it, but I SHOULD do it. It has taken a big toll on my confidence as I accept this New June and her limitations at times. So, Saturday morning, I put my big girl panties on and strapped my bib on my chest, and DID. IT. And it was amazinnnnngggggg. Yes, It was "only" at 5K (3.1 miles for the uninitiated), but I got a P.R. (personal record) - (To clarify: I have no idea of my finishing time yet. I'm guessing it was slow since I did walk/jog intervals.) I can look it up online eventually, but I know it's a P.R. because it's the first run/race I've done since being diagnosed in September 2014.

I'll set the scene right before this picture was taken: as I'm running under the finish banner, I'm pumping my fists in the air, and pointing to my crazy blue-haired head and screaming "I just ran this with brain cancer!!!! I just finished this with BRAIN CANCER!!!!!"

Thank you, Alicia, for being at the finish and giving me that big hug! (even though i was acting like a crazy person! haha!)

One of my best accomplishments ever. Because I knew I COULD. And obviously I SHOULD have. Because now I know New June ain't so bad. (That's the first on the list of the "pro" column.)

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[This spot reserved for my gratuitous photo of my grandbaby.]

The One in Which I Talk About the Power of Art and Whimsy

My parents with some of their grandbabies, a long, long time ago!

I have a confession to make: I'm not a "real" Californian. (FYI: I know most of you already know that. Just sayin') I'm a transplant from the East Coast. Truth is, most of the people living here are transplants - I could Google that Shit, but I don't really care all that much. It's a way to preface the rest of this: I moved here in 1992 because my husband IS a "real Californian whose family has been here since the Gold Rush - (the Pellier-Mirassou Side.) My parents were devastated when "HE moved us across the country - their daughter and two grandchildren". You see, my parents are amazing grandparents and we saw them very, very frequently before we moved. In fact, they made the decision when we did move that they would never let 3,000 miles get in between them and their grandchildren, so they cooked up a plan to make sure they see them every 6-8 weeks. With my dad's frequent flyer miles from all his business, they made it work.  They still have very close relationships with all are kids, and it took a lot of planning and work, but it's been awesome!

Getting to my point....

I remember one time sitting at our dining room table not long after we have moved, chatting with my father about how much he HATES California, and part of his reasoning was that Californians were "too optimistic". This comment has stuck with me. He was a born and bred New Yorker, and I grew up (mostly) in semi-rural New Jersey. How did "optimism" become a negative? (Maybe he will leave a comment below to explain what he exactly meant? Or he could share it with me privately, and I'll let you know, k?)

I don't know if I would paint a view like that about residents of CA, but I have been thinking a lot lately about making sure my life is filled with positivity, joy, and beauty. If ever there was a time for me try to be optimistic, this is certainly one of them. If you've been friends with me on Facebook, you know that I'm very close to cutting the cord there. I'm so tired of seeing and reading all the negativity and ugliness. It makes me sad. We all have this forum to share thoughts and ideas with so many people. What are you using it for? Just reflect on that a little bit, and ask yourself, "Why?" I'm not just talking about the political vitriol. Lean in to the screen for a second and I'll whisper: You know what? The people you are sharing all your very different political/spiritual beliefs are NOT going to change because of anything you write or share. Sorry to burst your bubble, but that's the truth.

But  I'm not talking about puppy or panda videos.  I know some people hate those, too, but I am a firm believer in the Power of Whimsy. Thus all the hours I spent on Pinterest looking at baby animals in my early days of recovery from my craniotomy. I've been reading a book called Radical Remission that goes into the science of the Power of happiness/positivity and healing. I highly recommend it to any other warriors out there.

Come on! Doesn't that make your heart smile?

Lately, though, I've also been compelled by the Power of Art. 

A couple blog posts ago, I made a comment about how you can make your own life. Here it is:

The One in Which I Explain my Paradigm Shift. I think one of my defining characteristics is my belief that we have a LOT of control of our own destiny, and in order to have things go your way, you have to think about how you would do it and then....DO IT. That seems to fly in the face of my father's belief about Californians, doesn't it? Because I was like that when I lived on the East Coast, too. I believe very strongly in living life purposefully. And alas, Dad, I think I was steeped in that belief from my earliest childhood...3,000 miles away from California.

My current situation has heightened this belief even more. Lately, as I contemplate my mortality more and more, and I think about how I want to spend the rest of my life ... (Hey, Kiddies, you know what? You can't sit up suddenly from your casket and shout, "Mulligan!") But guess what? I have some control over what I'm doing right now while I'm alive! Imagine that! We all do. And I call BULLSHIT if you try to convince me that you don't. No, you can't control everything (like these fucking cancer cells in my brain), but I CAN think about how I want to spend the time I have left - and plan my time so I can do some of that. 

So, let me just wrap this sucker up - I, personally, want to live in (see above) positivity, joy, and beauty. DUH! And I purposefully am planning things that give more of that - yes, spending time with family and friends, but also surrounding myself with things and places that make me happy, make me giggle, make me smile, my heart beat with joy. I've noticed that I'm spending much more time looking at art - literature, dance, music, paintings, and photographs and just STOPPING on a walk through the vineyard to notice a bunch of wildflowers. In the lucky times that I get to spend with my children and granddaughter, just looking at their faces, and listen to them laugh, and thinking how beautiful that is. How lucky I am. 

I'm not going to take a long time to get to the flip/downer side of this, but this is part of my point: I really, really, really don't understand why anyone would CHOOSE to do the opposite. Why are so many people out there focused on the ugly, evil, sad things in life? What. The. Fuck?  I'm not saying that we don't ever acknowledge it's there, because we need to do that sometimes in order to make changes. But don't wallow. That's all I'm saying. Yea, there is stuff out that sucks....oh, I don't know. Maybe like.....FUCKING BRAIN CANCER? But I prefer to look and think about this:

Or this:

Hey, this isn't even gratuitous! This picture of my granddaughter fits in with the context! Yay!

I could go on and on, but you get the idea....

So, here's a thought: the next time you feel compelled to go on a rant on Facebook (or whereever, for that matter - the parking lot, or your office lunch room?), instead,  read one of those classic novels that you've always wanted to read, but "never have time". Or go for a walk and look up at the sky or trees,  down at the grass or flowers. Or find out where your nearest art museum and go there when you have some spare time. 

You don't have any spare time, you say? Look in the eyes of your husband, wife,boyfriend, girlfriend, parent, grandparent....you know what I mean. Is it late at night? tip-toe in the bedroom and gaze at the sign of life - the breathing in and out. You know what? That's a beautiful thing, too. And a privilege.  

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P.S. I want to give a shout out to two FB friends from high shool days, Paul Liberti and Craig Shofed who inspired me by using Facebook as a medium to spread art and beauty.

The One in Which I Give Props to My Friend, HOPE

I'm playing my #cancercard liberally here as I find that my memory is declining a skoche <---(that's a real word that I learned from Steven, and I'd say to Google that Shit, but it took me some time just to find out how it really is spelled. What does it mean? How 'bout a smidgen?)  Anyway, my point is that sometimes I can't remember if I have already told some things to some people. I would be smashing as an Associate in the Department of the Redundancy Department, don't ya' think? (See, I think I already used that cheap joke sometime in a blog post here...#freepass. Hellooooooo! It's me. I have brain cancer. (#sorrynotsorry if I start an ear worm with Adele's latest breakout hit. Will you forgive me if I don't make another parody video and post on youtube? I thought so!)

Back to the point of all this. I know y'all or most of y'all know that I have been through a pretty shitty phase when I learned the MRI results showed disease progression. I wrote about it feeling like I had been punch in the stomach, but after some more processing, I think a better analogy is more like ...when someone a person (or dog) knocks you completely on your ass by running into your legs full-force. And at the moment, you have lost your ability to stand up, let alone walk away from where you are. After about a week or two of laying in bed and finding myself sobbing with what seemed to me like no new trigger. I was like stewing in a melange of sadness and anxiety.

I have been talking with a counselor pretty much since my diagnosis, and that's been super helpful. But my Self looked around at my crumpled tissues and lack of productivity for several days and declared, "We're gonna need a bigger boat." (Reference to scary movie of my day, Jaws. I've actually never seen the whole movie because I'm already afraid of sharks. True Story.) After some of this got really boring (and a little scary), I said, "Self? Self, I think you might be actually depressed. Self, I think you need more help."

As the first step, I reached out to my medical team and asked for a referral to a psychiatrist - very common for patients in my situation. Go figure! (Kiddies, I hear you saying "DUH!!" even if you're whispering it behind my back. I forgive you. You're right.)My new doctor prescribed a medication to help with my symptoms. Part of the problem wasn't just textbook "depression", but is insomnia because I couldn't stop my mind from spinning, thinking about what's going to happen next, and as you all know - that's a DANGER ZONE for someone in my situation. With the new meds? So far, so good.

I also said, 'Yo'! Self! You have an ginormous SUPPORT SYSTEM, and they are there to SUPPORT you. DUH! Reach out to someone! IDIOT!" This hit me while I sat in the CVS parking lot waiting while Steven picked up one of my many meds. So,  I picked up my phone and called one of my support system. I'll allow her anonymity - and say emphatically that just 'cause I did't call you, doesn't mean that I don't consider you part of my support system.

The person on the other end of this call...She is a fellow Warrior who battled Stage IV breast cancer. She had been where I am right now. We have the same sick gallows humor. BONUS! It sounded like we were talking a language that only we understood for the moment. She knew exactly what to say even though I blubbered in a way that she probably had NO IDEA what I had actually said. One thing that really popped like a bubble in my mind...she said, "You had a shitty, shitty week last week. Brush it aside and move on. You are starting a new week." Kiddies, if you are a caregiver for someone right now, take notes. Because that was magical. Acknowledgement and validation of my pain, fear, anxiety...wrapped in a big ball. And yet reminding me that you can move away from that. It can be different.

There I was, stuck in a hole, and she helped me out of that. Thank you, thank you, thank you Anonymous Warrior Friend! It reminds me of a TED talks video that my daughter once shared. It's a good one!

I've learned a huge lesson from this experience. I have so many lovely, supportive people in my life. Ask for help. Reach out for those hands . They want to help you through those hard times. So many people offered to help! But I'm used to being the helper, not the helpee. I guess I'm a slow learner.

Today is the best day I've had since that MRI Shock Day.  The worst part was that I've had a lingering feeling like I couldn't get back emotionally/mentally that I was before. The MFBCFNW. Where was the WARRIOR? Was she being a slacker? What was missing? Today I realized what I didn't feel: HOPE. Anyone slogging through these kinds of situations, has an old friend, HOPE.

Let me clarify this: I don't believe that having Hope when you diagnosed with a terminal illness is the same thing as Denial. Our old friend, HOPE, is the warm, reassuring friend that can embrace you when you need and say, "I'm here for you. I'll always be here for you." Today, I looked around and there was our old friend. It's like the personification of the positivity and love that my friends and family send to me through their thoughts and feeling. It flows to me and envelops me., embracing me with warm, reassuring arms, whispering, "I'm here. I"m always here for you. Don't forget that...No matter what anyone says, anything about statistics and odds and discussions about life spans...I'm here for you."

In my family , we have a tradition.(I think this comes from my maternal grandmother.) When someone is in a crappy situation, someone else might pat them on their head and say, "There, there." Sounds so simple, but in that small gesture and phrase you get: acknowledgement, validation, and the warm embrace of "I'm here for you."

I know it's complicated for someone who has never experienced the situation of being diagnosed with a terminal illness. I can't speak for everyone, but I will say for myself. I've been thinking a lot about what I really WANT so I can pass this along to you that are confused. If you want to help the ill continuing to feel HOPE, please don't act like their fate is a "done deal" - even if they are saying things like "I know I'm going to die..." Don't feed that part of their thinking. But the flipside is: don't say things like, "You've got this." or "You are going to beat this thing." I know, it's hard and counterintuitive. And again, I'm just speaking for mySELF, and I never said it all made sense.

So, what can you do or say?

• Hold them or pat them on the head and say:"There, there." or....
• "I'm here for you. I'll always be there for you."

It's very reassuring to know that our old friend, HOPE, is still there.

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Obligatory, gratuitous picture of my granddaughter, Autumn. She has been sick for over a week and still oh, so cutee!

The One in Which I Ask What You Would Do

I think Steven and I are still ..."adapting' to the news we got that I had a recurrence in my brain cancer. It's "easier" now that we've made a decision about which option of treatment we'll be pursuing. Or I should say have already begun pursuing. On Wednesday, we received a calendar with all my appointments that have already been set up with UCSF for the next few months. It's reassuring in a way - for a Type A personality especially - to know what is expected on our schedule. But we're still in the very beginning and have no idea if this new protocol will have an effect on the progression of my disease at my secondary site. We are on Cycle One of a 28 day cycle. Day 15, I have a fasting blood draw, then a Neuro-oncologist appointment. If the numbers from my blood draw are okay, I have my "infusion. After six cycles like this, I will just be having the Infusion Days and no Chemo Days. (I think that's right. Sometimes it's hard to keep all the details straight.)

I've already joked about this on Facebook, but I'm only partly joking. I didn't know exactly what the Infusion was going to be like, exactly...but now I know that is NOTHING like a spa treatment (and if it's on the menu of any spa you visit, DON'T choose it!), and there are no tropical drinks included with little umbrellas and the scent of pineapple or coconut - or lime, even... <rip off!>

Hey, I thought you said "cocktail"!?!?!

It's basically a drug being "infused" through an I.V. tube into my blood stream. I'm so used to being poked with needles, I know which arm is the better one with the preferred vein. (Anyone who has had/has a condition that requires a lot of blood labs, etc. is nodding his head in understanding right now.) That day, I begin my 5 day chemo cycle - pill form - at bedtime. At first, I thought, "No big deal...no real nausea with the help of Zofran and the magical MM, etc" and the most reported side effect from this other drug is eye irritation. I felt okay. Meh. Not too bad

The next day; however...I've never experienced anything like that. I've been "tired" before - really, really tired before along the way of this 16 months of initial treatment. But with this new "cocktail", I felt like someone had injected some kind of heavy metal into my bloodstream. Maybe it was like Ironman? But truth be told, I've never gotten into that franchise, so I don't think he's as lethargic and lame as I felt at that point. If I'm totally misrepresenting that character....#freepass #braincancer

What I'm trying to describe is that It required tremendous effort just to sit up or lift an arm or leg. And it wasn't like sleepy, like I had experienced before. The usual prescription for my chemo side effects were not helpful - lots of napping and binge watching on Netflix and Amazon Prime. So, I lay there like a lump. I think I was a lump. A lump o' June. Not feeling very Ninja-like at all.

Picture Ironman all rusted and creaking out: "Oil caaaaan....."  like the Tin Man of the Wizard of Oz. NOT like the Ironman triathlon endurance competitors. Does that clear that up?

Let's just say that it was not fun. That pretty much covers it all.

My clinical trial calls for a second infusion on Day 15 - which will be tomorrow, Monday, February 22nd. Without a chemo pill chaser. So....who knows what I await! Like Cracker Jacks! OOOOH, a surprise in every box! Not as tasty, but the prizes in the box now are just stupid. right?

I've not broached this subject on this blog much, but anyone in a situation like this - not just the patient, but the whole family - inevitably has conversations about "quality of life" versus "quantity of life".

Steven have had several deep discussions on our daily walks lately. And it brought me back to something I thought from the beginning with my diagnosis. That was the birth of The #mfbcfnw! Raawwwwrrrr! I don't remember much about the first few days home from the hospital after my craniotomy, but I do remember sitting on my sofa, with my oldest, April, sitting next me. She was noticeably pregnant (due in March '15). There aren't really words to say to your child in that kind of situation. but I remember saying, "I'll fight this as hard as I can. I want to be there to see your baby...." <sobbing, of course>

This what makes this situation right now particularly fucked up to me. Because I DID fight and fight and fight. And Mother fuckers, I have survived for ...almost 17 months beyond my diagnosis! I'm planning on attending Autumn's first birthday in March! Wooooot! I'm feeling a little Ninja-ish right now!

But I'll admit, when I first heard the news about the new growth in the secondary spot, I was a mess. Lots of sobbing and shell-shocked, really. And in my head, I was thinking,  Am I going to be like aRusted Ironman the rest of my life? Where's my Mother Fuckin' Brain Cancer Fighting Ninja Warrior?

I kept thinking over and over...."I really thought I'd bought myself some time."
An interesting twist of words. "bought myself some time". Well, my doctors would say, Yes, you have. You did everything you could do. This disease is just a GINORMOUS MOTHER FUCKER. <(---I think that I added that last bit.) But I'll continue to do that which I can control over to try to give myself a few more weeks, months, or years with my family and friends. I will juice and drink combinations of kale/spinach/cabbage/romaine....(it's not as bad as you think - REALLY!) I'll continue to walk every day that is feasible - except my Ironman days (if I should have more of them)

And my brain-cancery mind has thinking about it...what would YOU do to "buy yourself a little more time"? And the thing, we ALL have evidence before us that tells that we CAN. No, there's no money-back guarantees, but why do we all ignore so much scientific evidence that we're shown that if we do X-Y-Z, that it helps us to prevent certain illness or medical condition that decreases our quality of life. And yet...and yet...

we don't do those things.

Kiddies, I'm not pointing fingers, and I'm not counting myself out of this phenomenon. 

Yes, death can be completely random. You could go out today and just get hit by a bus. Boom. No warning. But would you step off the curb onto a street without looking both ways if something was coming in your direction? I'm talking about a little itty bitty change that could contribute to preventative steps.

I really don't want to have this feel like a lecture. It's not meant to be lecture. Like I said, I've just been having this stuff bouncing around in my mind.

If there was ONE THING that I could leave behind today is to have you think about your life and what you are doing now. What you value. What you would lose if you were tragically diagnosed with a terminal illness. What would you do to "buy yourself more time"? My answer right now? Almost anything. To see my granddaughter's second birthday? To be there when one of my other children got engaged and went to a wedding attire shop to pick out their outfit...and I could be there? OR watch them walk down the aisle...graduate from college or earn a masters degree...

Or the smallest, smallest  things.... I was doing laundry this morning, and I was hanging up one of Steven's shirts. It's one that he has a tough time getting the collar "just so" over his tie, and he always asks me to fix the back of the collar to cover the tie. And as I hung that shirt, I thought. What if I don't ever get to do that again?  I'm not making this up. This went through my brain cancery mind this morning. 

So, yea. You can be sure that this #MFBCFNW is still fighting. RAAAAAAWWWWRRRR! 

No gratuitous picture of my granddaughter because I'm headed out to see her in a little while, and I'll take plenty of pictures then! So, come back later to see it! 

The One in Which I Explain My Paradigm Shift

The last two blog posts have given you an idea about the shocking and shitty news I've learned within the past week or so. I have had some reservations about writing about what I'm going through. In my head, I'm saying, "Am I betraying my readers that look to me for inspiration?", Then I decided remembered this blog has always been 100% No- Bullshit and completely Authentically June's Voice and Thoughts Territory.

*Money back guarantee  - Nevermind that this blog is totally FREE!

So...

In case it wasn't clear to some of readers, I have always believed that I was going to die from GBM. It's always been a matter of when. I'm not going to dig through my previous posts to find proof that I've said that before. This disease is called The Terminator for a reason. I had some things in my favor to make my survival rate better than some Warriors, and it is true - I've survived over 16 months, better than the median survival rate for GBM patients. Yay, Me! This 16 months  has been filled with ....well, LIFE! Ain't it grand? But I just seemed like flyingggggg!

Unfortunately, this latest MRI results has turned everything on its head. As an inoperable tumor that can not be treated with radiation at this time--->Note: surgery & Temodar with radiation - three very helpful "weapons" in a battle against GBM. My standard options are  now: two kinds of chemo that have been deemed less effective than the Temodar, the one I've been on the last year or so) or three potential clinical trials. For the uninitiated (and kiddies, I hope you are one of them, because that means you or someone you love have never been ill with a disease for which research scientists are seeking a cure) Clinical trials are the protocol that drugs/treatments have to go through before they can be approved as safe and effective by the FDA. These trials go through phases 1,2, etc. to find the right dosages, etc 

The latest direction cancer cure research is headed is called drug "cocktails" - a combination of drugs like they used (eventually) to find a way for people to live with AIDS. There is a very interesting movie online about this "new-ish" direction for cancer fighting that's free to watch online Surviving Terminal Cancer. <----- Just learning more about Ben Williams, kind of rockstar in the cancer fighting community is worth just the click. Promise!

The book is good, too, but the video is fascinating.

So, after many agonizing hours of crying and talking with Steven, we have decided to participate in a clinical trial for brain cancer. What I want you to know about this:

1) Of course, we would love to have the best possible outcome from this treatment  - complete remission with a minimum of effect on my quality of life.

2) If I don't experience a remission of the disease, we hope for at least an extension of my life span. And the reality is, given my current situation, we are probably talking months - not days or years right now. Sorry to be the bearer of that shitty news. Of course, the doctors can never KNOW know, but this ain't their first rodeo, either. I believe that some people can beat the odds, and I know I'm not a statistic. But I also think it's important to be prepared for the possibility...and

3) Worst case scenario, at least I've helped with the progress to help future GBM and other cancer warriors.

 And that brings us to the paradigm shift to which I referred. After my first round of treatment- my first "battle", I think of it - I thought I had a chance to catch my breath, take a victory lap. It was not to be. The last week I've been so fragile, "I thought that I had so much more time.....so much more time...." <I've whispered that under my breath so many times in the last week.>

Given the change of circumstances, my focus has shifted.  I have not changed one iota in my feelings about appreciating life and finding joy in it - to FIGHT for all the moments that matter and realize that we need to treasure them. The Ninja is still there, no doubt!

The difference, I guess, is recognizing that we have to think about what moments are really important to us, and try to make sure they happen. If you thought that you had an indeterminate time, or for sure decades ahead of you, you might just trust them to chance. I can't afford to trust chance. Not just appreciating our lives, but recognizing that we're MAKING our lives every day in some ways.

You might imagine that this is an intense and emotional phase for me. If you do, you are right. And I'm sure you have rather figured out already from me that these "moments" I'm thinking about making are not a list of places to visit and experiences to have like bungee jumping in Vegas... 

It's.....everyone? everyone?

Friends & Family 

<gold star for anyone that said that right along with me!>

OR...

The One in Which the Ninja Warrior gets Punched in the Stomach

Warning: This blog post is rife with cursing. To this, I say: 1) too bad so sad. I have a #braincancer @freepass and 2) I really couldn't give a fuck if you're "offended". The Ninja Warrior is feeling particular feisty today, so.... if you don't like that, move along, move along, nothing to see here....you're clearly in the wrong place.

This week has been a DOOZIE!

On Sunday, January 24th, we had an amazing Open House at our new home with the guest list tipping above 100+. That doesn't count the people on evite who didn't respond or said, "no" - and those of you who are saying, "WTF? I thought we were part of their circle of friends." I'm sure you are. Have I mentioned that I have #braincancer? and Steven has a wife with #braincancer? The invitation list was a clusterfuck. Weeks and days before the party, we were saying, "Did we invite ____ already?" Shit! And I'd be on evite trying to right the wrong. So, I'm truly, truly sorry if we inadvertently omitted you.<smooches!> It doesn't mean we don't love you!

Anyway, the party was a blast - Steven and I were celebrating so many things, but one of the biggest was Schmoopy & the Outlier were celebrating June being around for 16 months. Living our dream in a house right in the middle of the vineyard. Woohooo! 16 months is a big deal!

Here's me, playing my jam, "Fight Song" - Yes, it's totally hokey, but I never said I wasn't hokey. P.S. I am. DUH! 

Technically, I don't think that I'm "Outlier" territory exactly (if I remember my one semester of statistics at George Washington University - see below), but I know that it felt gooooooood. You see, GBM patients who go through the same treatment I've been through, Radiation (30 days) and Temodar (chemo) for over a year - the median survival rate is 15 months. So, if felt to me like I crossed a finish line, but there was no end. In my mind, I was fist pumping as I ran through the tape, but didn't stop. I was still running and running and calling over my shoulder, "I'm still heeeeereeee!!! I'm going to keep running until I can'ttttttt!"

The next day, Monday, January, 25th, I had an extraordinary experience of attending the TriValley Martin Luther King, Jr. Fellowship Breakfast and received a Legacy Award. (Kiddies, see my last blog post. Come on. Don't make me link it. Don't be lazy! You can find it, if you try.) All that you have to know for the purposes of this post is that the morning/day was another celebration for Steven & me. Not only was I survivor, but I was being honored for what I've done the last 16 months! Incredible!

They said it was difficult enough to fit those four words in my name, so #mfbcfnw was dropped due to space limitations,

Tuesday, I had an MRI. Truth be told, it was originally scheduled for Monday, but we had to reschedule it because of the breakfast. It was the last post-chemo MRI scheduled and a big deal because if they found it stable, I was officially starting the "Watch and Wait" without medical interventions. or "Watch and Live" stage as I renamed it.

I spent Wednesday morning with my notebook and the computer, making preparations for two new adventures that I had on my goal board within the next few months. I don't know if I've shared this with you already or not, but long-range plans can be hard because of my condition. I sometimes experience anxiety when Steven and I start talking about things that are far in the future. For example, he's been trying to nail me down on specifics related to our Wine Lovers river cruise in April. It's been on the calendar for about a year, but (...call it superstition?)


I think it's sold out, but if you want to read more about it, click here: River Cruise <----

I avoid talking about things that are THAT far ahead. But when I crossed that imaginary "finish line" and broke the tape, I began thinking that I'd bought myself some time.

I don't know why I chose this arbitrary length of time, but I felt like I had about six months of "waiting and living" to just keep jogging along before I had to face changes in my condition. It seemed reasonably short, but a wonderful respite from all the medical interventions. The cruise is in April, so I felt comfortable making plans. And we'd just booked flights in March for my youngest, Sara, and I to go to Florida with my parents and visit Disneyworld and Harry Potter World. Harry Potter World!!! I was on the computer, getting goosebumps, just imagining going to Diagnon Alley and drinking "butter beer" with her.

Diagon Alley!!! Awesome!!! ( I already told you a million times that I'm dork and love hokey.)

The evening of Thursday, January 27th, we heard from our neuro-oncologist via speaker phone in regards to my MRI results. It's like she grabbed my shoulders and stopped my jogging, saying, "Stop celebrating. The cancer is progressing." No, that doesn't really describe the experience. It was like being punched in the stomach. Only, my NO is so gentle and sweet, I can't imagine her punching me at all. But it sure was a whopping punch. Through speaker phone, she described what the UCSF Tumor Board saw in my latest scan. The dreaded words: "disease progression", and we arranged to meet the next day to discuss it further and talk about Next Steps.

Which brings us to yesterday, Friday, January 28th. I'm not an Outlier -- for now, anyway.

I hope to someday to be wayyyyyy out there as an outlier, but I'm still in the cluster of dots.

 I'm sure as shit still a Mother Fucking Brain Cancer Fucking Ninja Warrior.RAWWWR! Don't doubt that. And if you are sitting there with your jaws hanging open with shock and sadness...I hate to say, "I told you so."...but I TOLD YOU SO! GBM is a mother fucker! It grows. That's what it does. As Steven eloquently says, "Does a cat have an ass?" (Yes, he has a B.A. and an M.A. in Literature. Ah, that was money well-spent. haha!)

So, I knew this time would come. I just didn't expect it so soon. I feel good and healthy. I completed my first week from training for the Couch to 5K for fuck's sake! (Oh, when I said that to my NO, she said, "That sounds like a good plan." Have I told you that  I love my NO! So, I'm still planning on running/jogging/walking that 5K in March.)

We met with her at UCSF yesterday and went over the options for the next steps. We are still in shock and overwhelmed by the situation, so if I don't respond to messages or pick phone calls right away, please don't take it personally. Maybe some of you missed my first post about talking to someone (me, specifically) who has brain cancer. I've put a handy link HERE <---- if you're interested or left unsatisfied after reading this one post.

One thing that I talked about there that's still very relevant....please don't tell me that "I got this!" or "You can do it!" Don't get me wrong. I'm going to keep fighting, and doing everything that I can do to be a long-term survivor. But there are no guarantees. Even the doctors can't tell me how long I have. At least mine say that. Only a dick would say, "You have to 1-3 months." Right? They don't know. No one is a statistic. I'll keep doing what I can to control my health, but unfortunately, we can't control the cancer.

So, yea. That's pretty much been my week. How 'bout you? Actually, if I look at it in total, Sunday and Monday ROCKED, and nothing can take that away from me. So, there's that.

Of course, I'll keep you all updated on the Next Steps once we make decisions. and the ball gets rolling. At the moment, I plan when to start Week 2 of the training plan for Couch to 5K, keep on jogging, keep on jogging...And imagining pick out a wand with my Dear Sara in March. And looking out the window at the scenery along the Rhone in April.  And there's probably gonna be some chemo and other medical stuff in there, too...but I'm not going think about that right this second. 'Cause Schmoopy and I just took the dogs on a walk through the vineyard for a little bit, and I think I'll take a nap. It's so muddy out there, I might have to wait for my next C25K workout, though.

Remember: Life is happening Right NOW. Don't miss it.

The One in Which I Talk About Legacies & End with Some Shitty News (Sorry!)

I mentioned in my last blog post that, several weeks ago, I received an email from the Tri-Valley YMCA - a very unexpected email - asking me if I was interested in participating in this year's Dr. Martin Luther King Fellowship Breakfast. They wanted to honor me with a Legacy Award. You could have knocked me over with a feather. How do they know anything about me? Who was considering ME worthy of this award?

I have since found out who knew about me. Hi, Kelly!!! I hope everything is going well with you!!!!

Anyone who has faced their own mortality has thought about what legacy they will leave when their gone. I believe I've written a little about it here on this blog somewhere. I could take some time and look for it and reread it, but.....#freepass! I've always been a little confused by this concept. In fact, I Googled that shit because I wasn't even sure of the definition of the word, "legacy". ( I thought that might be a good place to start, no?) I looked at all the major dictionary-like websites and all them seemed to have the primary definition as relating to something monetarily valuable. For instance, the Meriam-Webster.com "entry is this:


Full Definition of legacy
plural leg·a·cies
1: a gift by will especially of money or other personal property : bequest
2: something transmitted by or received from an ancestor or predecessor or from the past<the legacy of the ancient philosophers>

I guess I always thought of a LEGACY as something BIG and impacting a lot of people. Especially a lot of money or something that's very valuable. (Think: Bill and Melinda Gates Foundation or Zan Zukerberg Initiative.) I would never be in a situation to build that kind of monetary value, so I've spent a lot of time over the last year thinking if there was something BIG I could do - start a movement or turn the tide somewhere that would make a difference for a lot of people. With all the radiation and chemo and ...well, the business of living with cancer....Was there time? Or has my time run out?

This past Monday, I found out that although I might never have a national holiday named after me, (Hey, I'm okay with that! Although three day weekends ROCK for teachers! haha!) ...I knew people that I don't know "in real life" read this blog, but I found out that I am making a difference in other  peoples' lives. So.....this award is called the Legacy Award. I had to shift my thinking. The idea that my thoughts, and words, and ideas that I was sharing here on this blog was actually INSPIRING HOPE...that in itself, makes me so happy and humbled  - wrapped in a big ball of PRIDE.

I have had many people through the months, convey the idea that I was "inspirational" or "inspiring"...I knew that was a positive thing and a compliment, so (of course) I always said, "THANK YOU!" But honestly, I wasn't sure what exactly that meant... Guess what? I just Googled that shit, too! And what I learned first is that sucky thing that happens from the time that we're old enough to "look it up" - the definition contains the word or base word right in it. So, that's not helpful at all. Like:

inspirational

in·spi·ra·tion·al
ˌinspəˈrāSH(ə)n(ə)l/
adjective

providing or showing creative or spiritual inspiration.
"the team's inspirational captain"

Thanks, dictionary...that makes absolutely clear...NOT!

So, I drill down to "inspiration", which goes a little bit like this:

inspiration
noun
1.an inspiring or animating action or influence:
I cannot write poetry without inspiration.
2.something inspired, as an idea.
3.a result of inspired activity.
4.a thing or person that inspires.[emphasis mine]

So (because of the teacher in me) I went to the base word: inspire , and you want to know something cool? I'm not going to list all the definitions for "inspire" - (Kiddies, that can be some homework for you, okay?) Geez-a-louise! Don't be babies about it! Here's the link to one page!  ,<----click here
I just thought that one part just leaped out at me:

inspire
verb (used without object), inspired, inspiring.
12. to give inspiration.
13. to inhale.

I love the visual of someone reading my blog posts and inhaling. Take a deep breath of the love, and support, and positivity that there is in the world. And take a deep breath and KNOW that we all are going to leave a legacy whether we were lucky enough to be part of the Silicon Valley boom or not. It's not about the Mon-ey, Mon-ey (<----sorry for the earworm, millenials!)

It's the most valuable thing on this earth: Our Lives. This is our GIFT.
Receiving this Legacy Award was one of the proudest moments for me. And yet I was so nervous walking up to the stage to accept it, my knees were knocking together. Thank goodness I didn't have to speak then. They came out to our house and video-taped Steven and I ahead of time, and edited in to a little "video package" to run before my acceptance of my award.

I would remiss if I didn't thank my Schmoopy for all the kind things he said in this video. And he offered to escort me and hold my hand when I had to ascend these two steps on to the stage. What a gentleman! I managed to make it up there without pulling a Jennifer Lawrence or anything, though. Phew!

Proud moment, Monday, January 25, 2016

 Warning! Bummer News Ahead: The day after this picture was taken, I had an MRI on Tuesday. The news is not good. There is a significant change in between the last scan and this one. The scan was reviewed by the UCSF Tumor Board, and they believe there is progression of the disease. We just spoke with the neuro-oncologist from UCSF and have an appointment tomorrow to discuss our options. The tumor is inoperable and radiation & Temodar are no longer appropriate. We're entering a New

Take a big breath with me, please, and let's say it:

 Life is happening right now. Don't miss it!

The One in Which I Remind Myself of My Commitment to Me

Something totally and humbling ended up in my email box a couple weeks ago. I was informed that the Tri-Valley YMCA was interested in giving me an award at their Martin Luther King Jr. Fellowship Breakfast. Each year, they pick one of MLK's quotes, and it becomes their theme for the event. This year, the quote is:

“Everything that is done in the world is done by hope.” Dr. Martin Luther King, Jr

and the theme is: 

Inspiring Hope.

I don't know how exactly my name popped up while the board was making their decisions about who would be honored (there are three awards: for an individual, a company, and an organization, I believe), but I'm truly grateful and humbled about the decision.

The breakfast is scheduled for next Monday - yes, MLK Day was last Monday, but they have had better attendance by moving the event, since so many people go away for the "real" holiday three-day weekend.  [Click HERE <-- if you are interested in attending!]

In preparation for this event, they sent someone out to interview Steven and me for a little "video-package". This was a brand new experience for me. The interviewer was lovely and sweet, and made it easy as possible for me to talk, even though it was a little surreal, talking about myself that way. One of the first questions he asked me has been rolling around in my head since then, though.

He asked me how people would describe me. I immediately asked, "Now, or pre-cancer?" It was up to me to decide. Hmmm...I think pre-cancer, almost everyone would include some reference to "Type A", or "controlling", or a "planner" in any description - as have I. It's been a defining characteristic for me for a really long time. In fact, I think I was pretty proud of that - and maybe a little smug at times, if I were honest. (And kiddies, if you've read my blogs before, you know I also describe myself as pathologically honest, so yes, "I was smug about being Type A".)

And I've had a lot of changes since my diagnosis and year-long treatment. I've had lot of lessons learned about how I can control some things, but not a lot of things. For instance, I can't control this fucking cancer in my brain.(Damn it!), but I can control how I deal with it and live my life with cancer in my brain. DUH! That's the major message I tell myself and holler on high to anyone who will listen.

And I believe that is a BIG, BIG, BIG! message:

Focus on what you can control, and make the most of it!

However, I am no longer smug about being Type A/controlling. In fact, I have decided that we are the worst type of personality to be inflicted with brain cancer. It's some serious mind-fuckery (I might have made that word up just now, but "Worry about yourself!")

Okay, this is off-topic, but if you've never seen this video, I could watch it over and over. Still makes me giggle. And I think giggling and whimsy should be a big part of life.

We want to control and plan EVERYTHING, and our brain cancer laughs in our face and says, 'Oh, yea??" Not only can I not control the brain cancer, but I have neurological deficits because of the disease that make it harder to just plan and organize things  that used to be second nature. So, if you're type A like me, I suggest you don't have brain cancer. Well, I actually suggest that none of you have brain cancer, but you know what I mean.

But I don't have any control over that.
So, what to do... what to do?
I focus more and more on the things I can control, mainly: ME.

The next section is going to seem like I've gone off-topic, but I promise you, it will all come together in the end. I promise. It always does, right? Or almost always does... Hey, let's not forget about the #freepass, too! ANYWAY...

I have several rings that I wear every day. I'm a big believer in "anchors" or symbols that when you see them, it reminds you of something in particular. It's kind of like that string people put around their finger to remember something, only mine are a little fancier - one's gold (my wedding ring that Schmoopy put on my finger 25+ years ago). That reminds me of the commitment that we made to each other that day - and yes, what a GREAT decision that was! The second is on my right hand, made of platinum (oooo-la-la!) that Schmoopy gave me for our 10th anniversary. And again this reminds me of that commitment to my best friend and love-of-my-life, and ten beautiful years spent with him and our growing, amazing family.

But recently, I added a couple more rings. I had a ring set that I had purchased P.C. (pre-cancer), because my weight was up and not both of those previous rings fit on my fingers. Now, with all my weight loss, I have to be careful with my wedding ring and get it fitted correctly soon because I've managed to fling it off my newly slimmer finger a couple times when gesticulating wildly.

 I ran across this ring set in our move and thought, I wonder if this will fit on my middle finger now? Sure enough, they did.  I've decided since I've reached a new phase in my cancer treatment - after "graduating" from my chemo cycles. (I'm not making this up. My neuro-oncologist used that phrase. "graduated".) So, I slipped those rings on my finger, next to my wedding ring and made a commitment to myself. These are a symbol of my commitment to myself, to continue to focus on everything I can do, everything I can control to keep myself healthy. To Live Life and Find the Fun!

Symbols of the commitment to Steven on the left and commitment to ME on the right.

Thank goodness I don't have to actually speak at this event! I would be freaking out about now! But thank goodness I have this place to speak to you all! Oh, and one of the other questions was "What inspires you?" Of course, I said, Steven first. I don't know how I would make it through this year without him. And of course, my children and my baby grandchild also inspire me every day, even if I can't see them every day anymore. They are always on my mind!

This red flag is a symbol of my children. If I've already explained that to you in this blog somewhere...#freepass! If not, it will have to wait until another time. Xoxoxo! Love, Mom!

But there is no doubt that YOU all inspire me as well. Thank you, thank you, thank you for continuing to Inspire Hope in me! Love, June AKA The Outlier #mfbcfnw

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OH, and I almost forgot! Silly me!

Gratuitous picture of my granddaughter, Autumn, 10 months old! She's going to be running around soon!