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 I Describe My Amazing August...LIFE

In the last month, I've had four very special events - I was able to squeeze all that in because I had to have a root canal, and that pushed my chemo cycle back 2 weeks. So, let's all give a cheer for Root Canals! Hip-hip- ....haha! <silver lining, people!>

SKWinery BBQ -  Although, I just started working at the SK Winery last spring, they welcomed with me with open arms. They've been family to Steven for 18 years, and we have the good fortune to feel the love and support this year of this family. I hope someday, when I'm done with this chemo crap and my speech gets a little bit better, to rejoin the weekend crew in the tasting room. I'm sure they miss my singing in the tasting station between pours. <sarcastic tone> (You can blame my Mom & Dad for that one. Fremer Rule: Anytime something reminds you of a song, you must belt it out - or sing it under your breath when more appropriate. Catie has the same rule. Kindred Spirits! She even makes up her songs! I'm sorry you've had to go solo for the time being, but thank you for all your thoughts and prayers. <smooches!>)

Catie, my "singing partner", and loving part of our SK Winery Family in Patti's adorable BBQ Barn

Anyway, (that was some serious digression. #cancercard and TWO #freepasses) every year they have the staff summer BBQ. Last weekend, I was able to attend and be surrounded by our family winery. How lucky we are!

Hiking Trip - I wrote about this already (click here if you missed it), so I won't go into great detail about this. I'll just say that it's chock full of family and nostalgia and laughing and LOVE. (And that little bit about me falling on my tailbone. (Kiddos - Helpful tip: those little squishy neck pillows for flying? Work perfectly as tailbone donuts! See! even WITH brain cancer, I thought of that by myself! Imagine how clever I was before that bugger showed up*! j/k! <snortle!> )

Dad & his kiddos pretending we are just starting our hike. Psssst. Secret: We had already finished our hike.

Manresa State Beach - We have had a family tradition of camping at Manresa State Beach for about 4 days every summer. Yes, walk-in tent camping with a Coleman stove, campfires & s'mores, and sleeping bags, and card games by lantern light. The one "luxury" we allow ourselves are inflatable mattresses. I think there was a year when the girls didn't change clothes the whole time they were there - except for into bathing suits, of course. (A Girly-Girl just wouldn't understand the fun in that - We are not Girly-Girls.) Not everyone could come this time, and we missed you, April, Coffey, Autumn, and Katherine!!! The dogs, however, had a blast.

June, Aidan, and Sara on Manresa State Beach, August 2015 (A Girly-Girl would never wear that hat in public.)

This transition that our family is going through... It's natural when you have adult children, but it's really hitting me now because we've always had at least one child in the home with us. Our move to Livermore will mean that we have no children living with us anymore - the classic Empty Nest Syndrome. It's getting harder and harder to get all of us together at one time.  Steven and I took a page from my parents' book and decided that we'll continue to schedule Family Gatherings and cross our fingers that most of us can show up. If we wait until everyone's free, these gatherings become farther and farther apart. And our unofficial new designated Family Organizer, April, is doing a great job getting us together as much as possible. <Thank you, and I love you!>

Daou Winery- 
So, it was very special on Sunday to have all the children together, plus our granddaughter. Since Sara turned 21 in July, it's the first time that the whole family was able to taste wine together <eh hem> ... legally....in public. Katherine is still in Santa Barbara, so we were looking for a place to meet halfway. The ALMOST-GENIUS-IF-IT-WEREN'T-FOR-HER-BRAIN-CANCER (*see above) came up with the idea of meeting at Daou. It's almost exactly midway between San Jose and Santa Barbara, and it's an amazing view of the hills of Paso Robles. They serve real food paired with wines, and our tasting room associate was lovely and patient. Warning: if you ever find yourself surrounded by the six Mirassous, plus son-in-love, Coffey and little Autumn...it can be ....shall we say: overwhelming - in a good way.... in the most amazing, loving, witty, and raucous way you can imagine. Sara's boyfriend, Matt, has already acclimated himself to the chaos, and Katherine's boyfriend survived, so he passed the first test. (hee hee) Sometimes, I just sit back and watch my children interact, yelling and laughing across the table, and I get actual goosebumps. And I look at Schmoopy, and I think "We made this." And now Autumn has added a whole 'nother layer. (Which April & Coffey made...just to clarify...) Magical.

The Whole Family! Look at that view!

Autumn loves Grandpa Steven! He makes her laugh! 

Grandma June tried to get baby Autumn to take a nap, but there was too much going on! The snuggles were good, though!

As we were driving home from Daou, I was playing it all through my mind as I looked out the window - and I got to thinking about all the wonderful memories from just ONE MONTH of my life. I thought, I hope no one is feeling sorry for me right now. Not every month is like this one was, but this is my LIFE. I feel sorry for people that have never experienced the flood of love and laughter that fills my life. It may be cut short, and that will be sad if it happens, but please don't feel sorry for me. I am having the most magical, amazing, lucky life one can imagine. And I SEE IT. I FEEL IT. I GET IT. I'm not missing anything right now. As I've said before, some times we have to adapt - Life is constantly changing for everyone. But that doesn't take the MAGIC away.

I SEE IT. I FEEL IT. I GET IT.

The One in Which I Explain Why You Should Respect the "White Hills" and my Father

Warning: This is a part rambling post about my memories in the White Mountains and (hopefully) a little somethin'-somethin' to take away and think about...

Hopefully, this map gives you an idea about what I'm talking about....

Many, many years ago, my father was introduced to The White Mountains of New England, and then he passed that tradition on to us. We all have places that we immediately associate with our own families. "The Whites" was one of ours. My father initially took the whole family up there, but my sister was at an age and disposition to say, "Thanks, but no thanks."  and many of you may not know this, but my mother also had a brain tumor a long time ago - an acoustic neuroma - benign/non-cancerous - but it left her deaf in one ear and her balance slightly impaired. I just remember her on one early hiking trip, frustrated by trying to walk along muddy trails with railroad ties to avoid the mud and her thinking, "This is not my bag, baby." Also, she prefers to shop at outlets than hike. There's that, too. <--- Warning: this is my perspective, so my sister and/or my mom may have 'nother idea about this. You'd have ask them.

But my brother, father, and I continued to visit The Whites throughout the years. And if I had his original, annotated White Mountain Guide, circa ...let's just say, "Very outdated and OLD"[...one of the mountains has changed names, for goodness sake!], we could look up every trip we took and every peak we "bagged". Or use my brother's state-of-the-art Excel spreadsheet...but I have neither of those, I have to go with my brain-cancery brain, so there's bound to be some inaccuracies. Whoops.

Once early on, when I was [I'm guessing, but I'm probably not far off the mark...] 8 or 9 years old? - which would have made my brother the ripe old age of 10, my father planned a trip for the three of us to traverse and stay at all the high huts in the Appalachian Mountain Club. There are eight of them, total. Some of them higher than others, but we planned to include many summits along the way. I believe I carried most of my own gear - which is not particularly heroic if you are staying in hut at night with hot meals for breakfast/dinner, potable water to refill bottles, and you had no intention of showering/bathing the entire time. I don't imagine my ~8 year old self was too worried about hygiene at that time. I did brush my teeth daily, Mom! Promise! (as far as I can remember...oh, shit. probably not.)

I didn't know (I was far too young) that this was probably a very unusual idea with such small children, and perhaps not the most sensible idea. for the average father, I think "sensible" or "average" wouldn't be the first few words that leaped to mind when people described my  father's parenting ideas. I would apologize to my dad, too, but I think he would probably take that as a compliment.

Some Context:
For nature/geography-familiar Californians, The Whites Mountains would be called Hills. The highest peak east of the Mississippi is Mt. Washington at 6, 288 ft. (1,917 m), but what they make up for in height, is very unpredictable - sometimes deadly weather. Until recently, Mt. Washington Observatory held the highest wind recorded in the 20th century at 231 mph. If you follow the trajectory on the basic map above, you can see that part our plans were to go over Mt. Washington and stay in Lakes of the Clouds Hut, which at 5,050 ft., is still well-above tree line. The ascent to Mt. Washington is notoriously rocky, with blazes on white rocks that are much too far apart to see if clouds move in - which is often. The weather on the rocks is incredibly erratic, and there are crosses left behind to mark places where hikers have lost their way in a freak snow storm. 150 people have died on Mt. Washington since 1849. (Google that shit. I'm not making it up!)
Lesson Here: Respect the "White Hills MOUNTAINS".

Brother John clambering up the last little bit of the ascent, 2014.  Brother & Sister use poles. I have to learn how to use them!

The White Mountains disappeared from my repertoire for a good long while. I went off to college, and about 26 years ago, Steven and I went on a trip with my father and brother, and we got engaged driving home from New Hampshire! Then we moved to CA, and I don't think Steven had been back there since. Several years ago, the "siblings" had the honor to start regularly hiking again with my father for Father's Day. Mostly because my father did everything it took to make it happen - paying for plane tickets and making the reservations and paying for stays in the huts for all of us. (by the way, the huts used to cost a pittance. Now, they're like a four star hotel. in a decent city.)

He WILLED that to happen because he loves it, and he wants it to happen, and he makes it happen. At first, I didn't join them, because I thought I couldn't leave my young family for that long. But as they got older, I joined in again. Guess what? We all had gotten older. And it wasn't as easy for my father to ascent to the highest huts. So, we adapted.

Two years ago, I summitted Mt. Washington like a billy goat, scrambling up the rocks with energy to spare. I was training for half marathons at the time, so it's not so surprising. My father took a shuttle up to the summit and descended to meet us at the Lakes of the Clouds Hut, which is still as rocky, by the way.

My seestor and me on the summit of Mt. Washington. 

We had some harrowing experiences as a result of underestimating the Whites and overestimating our collective capabilities. In addition to my triumphant ascent of Mt. Washington, my father arrived at the hut mostly unscathed. (I always say the downhill is actually harder than the uphill, especially on rocky terrain. And 50-year old knees.) The good news: We beat a storm in. We waited a day for the storm to pass, staying an extra day at Lakes (adapt!) and when it didn't, we attempted the next leg to the next hut. (Kiddies: Always have a Plan B in these sorts of situations.) After a couple of hours on a ridge trail, above treeline, being blown sideways by gale force winds and being pummeled by heavy rain, we went with Plan B : go down the next trail that lead off the ledge and get the hell below tree line. It's still a long way downill in slick conditions -  from 5,000+feet and the rain was creating unexpected, rushing water that created tricky crossings on the trail (adapt!). We emerged from the trail-head after dark, after something like 17 hours of hiking?!?! I'm sorry for repeating, but I have to remind you at this point that my father is 75 fuckin' years old. [So glad to say that in the present tense because that was some scary shit.] 

So, we continue to adapt. I've had this trip on my Goal Board for months. With memories of last year's trip still seared into my mind, I thought about a week in July with Steven and my family in The Whites. Could I do it? I have been walking 3 miles up The Hill everyday. But the Hill is paved, and I don't carry anything but an emergency card/meds/and a waterbottle. Thanks for radiation, I've a lost of my muscle tone. My legs look a little like chicken legs - ME. Miss Humungous-leg-muscles-my-whole-life. My arms? Let's not even talk about it.

The week we had planned was perfect - the week and 1/2 after chemo. I felt good. I learn each time I travel more and more how to adapt to living with my disease. Carrying plenty of water and fuel. We planned to stay in one "somewhat higher hut", Zealand Falls, and the rest of time at Highland Center, a "Low Lodge", that conveniently allowed my mother to join us.

As it turned out, the Weather Gods were kind to us, and we had a fabulous time. My Schmoopy AKA Cabana AKA Mule carried my extra water, my sleeping bag, and rain gear to enable me to participate with almost no glitches.  Okay, True confession:  There was this one time when we approaching the falls, and they have little side trails for you to "peek". I lead Steven down one of those and was so distracted, I slipped on a large, slippery branch. Schmoopy (being Schmoopy) reached out his hand instinctively to save me, and I reached out (instinctively) to grab him...unfortunately, our packs adjusted the weight in the wrong direction and down we went. I fell on my coxic bone directly on that branch  - Sorry for no fairy tale ending (<groan> bad pun), and Steven was a little scraped up, too.... . We have no actual footage of the incident, so we reenacted it for you:

June: Ohhhh, Noooo!  Steven: I'll save you! P.S. My ass still hurts from that.

A highlight of the trip was having my mother also join us for a little romp through nature. We found a lovely river to splash around in enjoy the beauty around us.

I love that we're getting my mom out from behind the camera and pictures of all of us together!

So, I knew this post was going to get out-of-hand, and a little too travel-loguey. Too many great pictures. So, sue me. Hint: this is FREE.

As I've said in most of my posts recently, I've been thinking about the legacy we all leave. I could say, my father has definitely passed along to me and my siblings the love of the outdoors, but that's not all that I want to capture here. My father loves hiking. And he's going to keep doing it as long as he can, even if it means adapting to new situations. He's a role model for me as I navigate to figure how to live as the New June. So, I can't carry all of my gear and traverse a 8 high hut hike. Is that what matters?

I can you hear saying it, nay, yelling it at your screens, "Hell, NO!" What matters is that I got to spend a week doing something that I love with my family. Whatever your equivalent is - whatever is standing in your way of doing what you "used to love". One word for you: Adaptation.

Right, Dad? <imaginary high five with my father!>

Lesson Here: Respect My Father

See ya' on the trails!