June "Outlier" Fremer Mirassou / July 6, 1964 - August 17, 2016

The One About The "Sweet Spot" Harvest Season

I’ve Warning: Not completely proofread!

had on my To Do List for a long time to attend a support group(Not surprisingly cancer warriors do better if they reach out for support not only from family and friends, but also people who can completely relate with them about what they are experiencing.I finally made it to one last week and one of the topics* that came up was anger – are you angry about anything? and how are we dealing with our anger?Throughout the group, There was a lot anger expressed about treatment by medical professionals during treatments. I didn’t have much to add to that area. I’ve been lucky (apparently), not to have the same experiences. I talked about THIS (see below) a little in the group, but it keeps bubbling up in my thoughts since:

Let’s back up, first though… to put things in context.in fall 2014, just before my diagnosis, Steven & I seemed to had hit a wonderful stride in our marriage.  When we were both working, we would send each other the kind of texts that you would expect from honeymooners….NO! Not THAT kind of texts…Get your minds out of the gutter! More like, “I love you!’ <emoticons of sparkly hearts and kissy faces>  Or a standard exchange between each other, “I love you!” “I love you, too!” “No, I mean I REALLY love you” If you’ve been reading my blog for a long time, you know already that my diagnosis happened in the middle of the 2014 harvest season. 

What I’ve never wrote before though, was that this harvest was different for me than harvests before - from the beginning. Not much differently for Steven as far as what he had to do in the beginning: he was driving back and forth from San Jose to Livermore for so many years to make "Magic happen" (turning those grapes into delicious wines) while we lived and I worked in San Jose. All the kids were old enough at that point – and done with school (except college), so I made a decision that I was going to make the effort to do anything I could do to make this harvest season  less difficult for Steven, while I could learn more about how it works. We had  the gift of potential time together if we were  , I was committed to make it happen.

I brought an inflatable mattress for his Livermore office…pillows and blankies…(One amart alek wanted to know where his teddy bear was...)so he could sneak in a nap at times and didn’t have to drive home every night and he could roll out of bed around  - by 5 a.m. and be the first one in the production area, greeting new bins of  freshly picked fruit as they were rolling in from the vineyards. 

He was in his element. What a joy to watch him when I could see him in those moments!  

A few times, I drove up to Livermore in the middle of the week. (after my work day ended) to share dinner together and, I’d get up the same time as Steven and battle of traffic towards the South Bay to get home and get to work on time myself. Sounds crazy, I know, but it was worth it. And it seemed only fair after so many harvest seasons when Steven was carrying the burden of commuting.

I refer to this time as a “sweet spot” in our marriage. And…. Yes. I have been angry that that was abruptly interrupted by the shocking discovery of my health condition. 

Steven and I have talked about this during our ritual walks through the vineyard with the doggies. 

More than once, he’s pointed out how he is even more proud about our marriage as a result of how we’ve handled our situation. Smart man that I married, huh? He’s always been a Smartypants, but he impresses me more and more daily. How can I be angry about that? I’m so lucky now – and really, if I think about it, I have to recognize how lucky we have had that “sweet spot”. I have a feeling that not all married couples have that ever.I wish that for you all.

[Kiddies - if there reading this and engaged to be married, I hope you are thinking that this is what it looks like when you say, "in sickness and health..." You better mean it.]

  

And don’t get me wrong. This hasn't all gone away.We still have aspects of that time that this  - mother fucking brain cancer HASN’T robbed it all from us. It's can be still so sweet.We still send each other those “sweet nothings texts” and more than ever, I TRY to express to my best friend, love of my life, how lucky I feel to have him in my life – how proud to call him my husband. 

KIddies some more truth here: It’s hard having to rely on his support morethan I can it seems that in anyway I can reciprocate, but I HOPE I can some day in our future that we’ll have another ‘Sweet Spot Harvest” on our horizon. One beautiful thing is: that I will recognize it because I already know what it looks and feels like. And I’ll treasure it, too, like what I do  right now.                    

*

*I'm pretty sure that I'm breaking any rules with support groups by just bring up a topic ewithout any names or such?  #freepass #newbiepass

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.]

This morning, I googled “Oprah’s Favorite Things 2015”, and the first hit was for a link to amazon.com.  I thought, that says a lot, huh? I’m not going to say anything more about that. (Kiddies:You draw your own conclusions and don’t send messages calling me a hater. Or do, if you feel compelled, but know that I'll just delete it, erasing negativity to my life)  I’ve just been thinking lately about how my list might look and how it would compare to a typical Oprah list. -

So, here it is: June’s Favorite Things – 2016. Unfortunately (for you, I guess?), I will not be hiring staff dressed like Elves or something to run around to your chairs and give you a duplicate like Oprah does. So, it’s okay if you don’t go bizerk after reading and start jumping around like a 14 year-old girl at a Justin Bieber concert.  But I thought it would be an interesting exercise for me and maybe inspire some of you to make your own lists.

June’s Favorite Things – 2016 Edition

• v  Getting to see my grandbaby, Autumn frequently because of all this amazing different technology - smart phones with FREE apps like Snapchat and Instagram. It is like Christmas morning when I get to wake up to see her beautiful face and stunning blue, blue eyes, doing something adorable and growing up “right before my eyes”.

She's not even a "baby" anymore, huh? Grandtoddler Autumn? Any mom will say, though, that they're always OUR babies! Right? Sorry, kids. It's true.

• v  The feel of Steven’s hand grasping mine as we take walks our two rescue dogs around the vineyard. This comes in several flavors, too:

Ø  Gloved hands or bare hands, winter coat or sweatshirt…with or without a scarf

Not that much color-coordinated, but I seriously doubt that the "What Not to Wear" cast is lurking around there...

• Ø  Hats! hats! hats! That have all been given to me by friends near and far. Some of them are handmade by them, and I imagine as I cover my blue haired-head, and think how lucky that I have so many people in my life that are so thoughtful and loving. And it’s amazing how just putting a hat on can make you feel so much warmer!
• Ø  And tangentially related: my short blue hair. I don’t know why. I can’t explain it. I just love having blue hair.

• Ø  Muck boots, hiking boots, or running shoes -  Depending on how long ago it rained.
• Ø  Watching the morning light rise above the hills behind us or moving quickly and watching the horizon to the west to try to race the sunset (to be watched in our backyard).
• Ø  Vines filled with grape clusters, barren vines, stunted vines after the pruning, and the latest look – buds beginning to sprout. REALLY Watching the cycle of something grow is magical.
• v  ½ hour per day devoted to meditating and virtually being transported to my most safe and lovely place, feeling so safe and strong, and refreshed when I’m done. Which bring me to...
• v  Naps. Some days are naps because I feel so yucky from my treatment, and I just want to shut it all out. That’s actually a good thing. But It’s even better when I just need a little rest, and I doze off during reading or a little watching of something on Netflix.
• v  Listening to the cacophony of birds in huge, tall trees around our house about sunset, and suddenly seeing a flock of them seemingly bolt out of the tree to find their next group perching spot.
• v  Surprising a jackrabbit on one of our walks, seemingly hopping fast as the speed of light, especially when Capi and/or Tess see it and start chasing it…as if they could ever catch it!  (Excuse me, I’m gonna Google how fast a dog can run and a jackrabbit hop. I’m guessing that there is a great difference, based my observation.) Okay, let’s start with making clear that our doggies are not greyhounds. One is a pretty lazy rescue mutt from Baja (which means that it’s a mix of pretty much everything) and the other is also a rescue dog. Her mom was rescued while pregnant, so we know Capi is ½ long-haired dachshund, but her dad must be some kind of terrier because she doesn’t have the squatty, short legs. And she loves to herd! Honestly, she’s clearly faster than Tess, but Sssssh! We don’t want to discourage poor Tesla! Anyway, answers.com says “Average speed for most dogs is probably around 25 miles per hour”. ….It says Jack rabbits run 40 mph. Now, I know this isn’t very scientifical* but I do know that’s pretty funny two watch my two dogs try to keep up, and it’s clear they’ll never reach it. Ahhhhh, optimism! Gotta love it!
• v  Watching movies. Usually, I prefer documentaries. I guess it’s the History Geek gene in me. I'm browsing through Netflix and found a series, American Genius from the National Geographic Channel. (Don't get me even started on the so-called "History Channel". I highly recommend this series, though! The first episode is about Jobs and Gates. Even if you've seen all the Steve Jobs films already (guilty as charged!), I think you'll still get something out of that episode, and more from some of the others. Speaking of that....
• v  Friends that don’t judge me for laughing at or enjoying ""inappropriate things". Better yet – friends that laugh with me.
• v  Camping – I have so many wonderful memories of camping with my “family of origin” (my mom, dad, and siblings) and my “nuclear family” (my husband, and children) I learned those distinctive phrases from my Cancer Counselor. Which I guess reminds me of another one of my favorite things:
• v  LEARNING SOMETHING NEW. It can be just a fact or a skill. It’s exciting to me that it’s boundless. The Brain Rocks! Come to find out, even with some brain cancer in it!
• v  Children. DUH! Especially teaching them something new. One of my favorite moments as a teacher has been is when a child first figures out how to read. When they figure out that all those squiggly lines on the paper MEANS something. And by reading you can be transported into another world or imagine what it would be like to be someone else. Which brings me to…
• v  The Harry Potter series. J.K. Rowling is brilliant. In our household, a release of a new book in the series was quite an EVENT. We've even sorted ourselves into the house we believe we'd all belong. Apparently, they all think I'm a Hufflepuff.

• v  And obviously, having my Nuclear Family members together. My children are all so different from each other in many ways, but they’re all amazing people. And it’s great when I get to see members of my Family of Origin and (rarely) when we get to all be together. (See! Aren’t you happy you learned something new today? Being able to clearly distinguish what you’re talking about when you say “family”?) #yourewelcome

Well,  I should have given myself some limits like June’s top 25 Favorite Things or something because I just keep thinking of more and more…Maybe I’ll just pop one in any ole time like my gratuitous granddaughter pictures? Did you notice that I didn’t have to do that because I had the context again today. Score!

Okay, you've let me start. That was fun and uplifting! What about you? And you'd have to be dense to not see theme of my list and how different it is from Oprah's. [Do you need me to draw a Venn diagram? Didn't think so.  But hint: No elves required here.]

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*Yes, I know the word “scientifical” isn’t a word. But it should be.  

And P.S. I know that you can’t believe everything you read on the internet. I hope you do, too. Learn to use snopes.com and when something you read online makes you think, “Hmmm"The Dog Whisperer" was in legal trouble in court. And I thought he had died several years ago. Through a minimum of internet research, I found out that his death was a twitter hoax. Go figure. I'm just sayyyyyyin'.....

I just realized that I didn't really write anything in here about brain cancer. Interesting! Coincidence? or Something More? If you are feeling ripped off, I am working on my medical update page, so you can read some of that by clicking on the tab up above. ^^^^^

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...