Friday, April 22, 2016

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.




Wednesday, April 6, 2016

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?


(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?