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.)

______________________________________________________________________________

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

The One in Which I Really LIsten to Todd, the Hawaiian Surfer Dude

First of all, I have to thank everyone who rallied around me after my last blog post and offered gentle, kind words of encouragement and support. I suppose you had every right to "pull a Cher" and just tell me to:

If you don't know this cultural reference, I'll give you a hint: (you still have Google it) but add "Moonstruck" to the search.

Instead, with your love and support, I've pulling myself back up onto the "board" and trying again to find my balance. 

During my surfing lessons with Todd the Hawaiian Dude, one rule he taught us is this: once you have your feet planted on the board -  you need to focus on something on the horizon - some point that would be in the direction you wanted to end up. If you focus on something else...damned if your board doesn't veer off course and send you in the THAT direction. It doesn't guarantee that you are going to end up where you wanted - but you have a hell of lot better chance.

In Maui, I may or may not have had one run when I was distracted by this little boy on a board in front of me...and almost ran into him because I was focused on HIM instead of where I was supposed to be going. I can neither confirm nor deny this story. The only one who could rat me out tell you the true story is Katherine. <slips Katherine a $20> We're all good here, right?

Pop Quiz: Who in this picture isn't focused on where he/she wants to go? DUDE!?!

With that in mind, and my lack of ability to "stay on the board" this past week, I thought it made sense to look back and see what I've been focusing on lately. And as the first step, I returned to the "scene of the crime" and reread my last blog post.  The first thing noticed is that I used the phrase "in control" to equate with "balance" ... And I'm clearly afraid of NOT being control - which in my mind, means falling off the board.

What I'm hearing in my head is Todd, the Hawaiian Dude/Surfer Instructor, asking me, "What were you FOCUSED ON?"

Well, that's easy for me to tell you because I have a lot of evidence of what's going on in my head. I write most of it down! Let's have a little look-see, shall we?

I shared a picture on my "June's Warrior's" Facebook page yesterday. Let's call this Exhibit A:

When I'm not blogging, these are the journals I write in the early morning  - when I'm not screwing around on FB.)

This is a little window into my world in the early morning, while everyone else sleeps. I have my private time with my various journals, my blog, and anyone on the East Coast who happens to be on Facebook.

Let's examine Exhibit A:
First, in the upper left picture is a simple 2015 calendar. As a teacher, I usually buy the Academic Planner types that go July - June, and I DID have one of these in my purse this year. But I told Steven that it freaked me out that my calendar "ran out" in June 2015, so we replaced it recently for a "normal one"- I wanted to be able to write the things we're doing all the way until the end of 2015. It's funny how little details like that can play with your mind, no?

About a month ago, I bought a three-pack of moleskin journals from amazon. The one in the upper right is my Private Journal. It started out as a Gratitude Journal - and I do write about the things for which I'm grateful....but I've found it helpful to just have a place to let loose with no rules. So, it pretty much is a spewing of all the thoughts, good and bad, in my head. It's more of a clear-my-mind exercise. Which is why is PRIVATE. #nojudging! #suckitmariannewilliamson #sorrynotsorry #freepass

The second journal (bottom left) is a customized "To Do" journal. I used to love the Franklin Covey Planner - and I still like the concept - You set purposeful daily goals based on long-term goals that focus on your core principles & values. Phew! That was a mouthful! But having spent mucho dinero on various configurations and sizes of the planners through the years, I've found The Secret: you only need.... <drumroll, please!> paper and pencil! Voila! I just saved you a ton of $$$! Score! Now, if you want to know the whole process behind it, you might need to plunk down a few nickels at the kindle store to read about Covey. Or just google that shit..because the concept has been around for EVER. 

The final journal is more of a notebook in the classic sense. I take notes from books, documentaries, and the internet to help learn about my disease and health/wellness. I've divided my Health/Wellness into the classic trifecta: Mind, Body, and Spirit. This notebook contains the little "smoking gun" of truth about what I've really been focused on.

I've been reading/taking notes as much as I can about:
My Body: 

• How can I nourish it to help it heal from the intense treatment I've just gone through, as well as boost my immune system for the months ahead of chemo cycles? 
• What can I do/how much can I exercise my body to support my healing and strength?

and
My Mind: I've been voraciously reading about my disease.

• What can expect from my current Standard of Care?
• What are the latest breakthroughs in treatment of GBM? 
• What can supplements/alternative care are available to support the standard of care that I am receiving right now?

But then my mind goes beyond that, to....

• What happens next if/when this current standard of care stops working effectively. 
• What do survivors do when the 5/23, Temodar cycles don't result in stable MRI's anymore.
• What if...what if....what if..

Ummm...   June?   Where the hell is your focus???

And I had a Big Fuckin' A-Ha Moment. You know that 2015 Planner that I talked to you about in the beginning? Steven has been trying to have conversations with me about things that are planned 4 to 6+ months in advance, and I've been avoiding these planning sessions. Ironically, I've been assiduously avoiding the 2nd half of 2015 altogether.

I'm so afraid of the (potential) rocks ahead that I'm not lifting my head up and looking at the horizon. I think I'm doing a (reasonably) good job at appreciating the MOMENT...at being grateful for what I have in front of me RIGHT NOW. (See, Marianne Williamson! #notsorry!)  That's not scary at all. It's beautiful and magical and sometimes even awe-inspiring.  

Mommy-to-Be, April, 8 months pregnant now!!!

I'm going to be grandma sometime in the next month or so!!! What?!?!? It's so exciting!!!  

 
But in order to "stay on that board", in order to find the delicate balance of living with cancer, I also need to be casting my eyes on the horizon, too, and focus on where I want to end up.

Once I realized my mistake, I went to explain/confess to Steven. I said, "You know why I haven't wanted to talk about these trips we have coming up and do the planning with you? I've been afraid that some medical emergency might happen while we're away, and I'm scared about what we would do. Especially being 6 or even 12 hours away from my local medical team.  Steven, you know why I have been avoiding talking about these plans? Because I'm afraid of what we'll do if something goes wrong."
<And I used the "s" word!>
"That's just STUPID!"
(Kiddies, you thought I was going to say something else! I can tell! But I've been a 5th grade teacher for more than a decade and "stupid" is the "s" word for most of them. Isn't that cute?)

Yes, I can plan. While recognizing that I have limited control of the ultimate outcome.  Shit happens. (Shhhh! Don't tell the 5th graders!) But I can't control everything. And I certainly shouldn't FOCUS on the worst possible scenario. Listen to Todd the Hawaiian Dude, people!

So, I made a goal to spend more time focused on the direction I want to go on the horizon. I think that's maybe the Spirit part of the trifecta. The part that people use the words faith or hope to describe. It's not that I haven't thought about it, or wrote about...but I haven't ACTED on it.

SPIRIT:

• One of the first things on my list is to work on Meditation. I've been reading about it, and taking notes, but I haven't attempted to DO it. (Okay, I attempted to do it yesterday, but I ended up napping. It's a beginning, though, right?!) 
• I also know that I will be better off if I join a support group of Cancer Warriors/Survivors. I have the dates/times written in my notebook, but I haven't gone to one yet. Now, I have written it in my planner to attend a group the 2nd week in February.

I hope that Todd would be proud of me. I am up on the board, enjoying the feeling of the water rushing beneath me and sun on my skin, but I'm also looking ahead at the horizon and trying to steer in the direction I want to go. I might veer off course anyway, but I'll probably enjoy the ride a lot better if I let go of the fear of what could go wrong along the way.

P.S. I need a 2016 Calendar so I can write down: "Celebrate Autumn Elizabeth's First Birthday!