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 Schmoopy & I go to the Happiest Place on Earth

Not long after I was dx'ed, had my surgery, and started to get the gist of my prognosis, I told Steven that we needed to start thinking of the things we wanted to do and DO THEM. You know the saying: "You better get busy living or get busy dying!"

I refuse to call it a "bucket list" because that implies that we are doing these things because we think I'm going to "kick the bucket" soon. (Where the hell did that saying come from? Hang on. I'm gonna Google that Shit!) Huh! Interesting! There's not a consensus. What?!You thought I was going to tell you? Geez-a-Louise! Don't be lazy. I've got better things to write about...

Like.... one of the things that popped into my mind pretty much right away when I thought about my "To Do List" (See! Doesn't that sound much less ominous than "Bucket List"?) was to go to Disneyland with Steven.

Spoiler! We went to Disneyland last week!

 I'm a big fan of Disney - yet, we'd only went once with the kids ... such a fun trip! They may feel a little deprived about that, but it was a deliberate decision to wait until they were old enough to really appreciate it. And we saw plenty of evidence this week of babies and toddlers being dragged around the park, crying and whining. I've decided that going to Disneyland with a baby is only a slightly better idea than going to Las Vegas with a baby. (Don't get me started on that...)

This time, The Planner in me came out (She's so annoying sometimes!), and I downloaded The Unofficial Guide to Disneyland 2015 and the app for my phone to check wait times for rides. I was sooooo prepared! Only my subconscious - or brain cancer - either one (You decide.) played a cosmic joke on me because in the last minute rush to pack the car for the airport, I LEFT MY PHONE AT HOME! Now, those of you who know me understand how bizarre this is. But it was such a blessing. It was really like I left The Planner at home, too, and I already said how annoying she can be. Plus, I think The Planner is becoming more and more unreliable. with the short term memory loss and stuff. (Sssssh! She might hear us, and we wouldn't want to hurt her feelings or anything...)

Honestly, I'm so glad I didn't have my phone there. I saw so many people looking through the lens of a phone or an ipad during the parade and fireworks, annoyed because people in front of them were blocking their shot. Put the damn thing down and watch it NOW! It's happening NOW! And who the hell is going to watch that video of the fireworks display later? It's not the same. You are in Disneyland! BE. IN. DISNEYLAND.

I confess that my phone is a very convenient, always available camera - so I have far fewer pictures than I normally would. My mom & dad gave me a Canon Rebel for a birthday present this month (Woot! Thank you!), but I am still learning how to use it. I stuck to "automatic" settings so that meant mostly daytime pictures outside. Part of that is because I'm not a scofflaw and when they say, "No flash photography", I listen! <eh hem!> ( You know who you are, Scofflaws!!!)

Waiting to explore the Pirates' Lair - Argh!

Ruh Roh! (I can hear my oldest daughter already saying, "You guys are such DORKS!"Yep! We let our Dork Flag fly freely!

Anyway, without the phone and the Planner, we were FREEEEEEEEEE!!!!! Free to just wing it! Well, not exactly because the brain cancer insisted on coming no matter what (BRAT! Way more annoying than The Planner), so we needed to make accommodations for it. What-ev. Life is about adaptation, isn't it?

And we're learning more and more about the BRAT and how to travel with it:
1) The BRAT gets tired, just like any toddler you would take to Disney. Except I can't take it out and put in a stroller, feed it treats, and yell at it when it has a meltdown - (which seems to be the strategy of many parents when their brats - I mean, sweet, lovely children  - have the expected meltdown in the mid-afternoon.) 2) The BRAT needs a lot of water. I mean, A LOT. We learned that keeping a close check on water intake was one key to success. 3) The BRAT needs to rest. And we need to listen to my body when it's saying, "Yo! Can we sit down a bit? Or go back to the hotel and lay by the pool and take a nappy, nappy? Thanks!" Finally, 4) My body needs calories to counteract the effects of the BRAT. I know that we walked a LOT. And we made sure we stopped and had a snack every hour or hour and 1/2. We even stopped at Whole Foods after we left the airport before we checked in to the hotel! Sure, we indulged in some off-program" food, but overall, we feel better when we eat better. (See, even though The Planner didn't make the trip, she left some helpful advice!)

The single best thing that we did was to suck it up and admit that I have a disability. The first day, we went into the City Hall and armed with a letter from my oncologist (which they didn't ask to see, FYI), I declared that I am battling brain cancer and the fatigue from my treatments (and probably the BRAT, too). So, I needed some accommodations. She checked to see if I needed a wheelchair (no), and then set me up with a program that allowed me to avoid those long lines. Thank you, Disney!  Anyone who has a disability knows that is a hard thing to do - to publicly declare that you aren't "normal" and can't do all the things that other people can do....that you used to do. But in the long run, it's better to just own it and focus on what you CAN do. It's way more fun. Trust me!

We rode about 3 - 4 rides each day and, the rest of the time just soaked in the ...well, I'll just say it, no matter how hokey it is.... the MAGIC of Disney. We all get to be children at Disneyland! And see the world through their eyes. Where else can I rock those ears with that bow?? The characters walk by and smile and wave. Princesses and Chip & Dale waved at ME...(or my general direction). I'm a big believer in whimsy, and

"Disney = Whimsy on Steroids." 

If Disney wants to use this as their new slogan, they're going to have to pay for it. <grin> That's gold, Baby, pure GOLD!

One of my favorite moments was when we were watching the new nighttime parade for the 60th Anniversary, and this little girl was right over Steven's shoulder yelling ...no...shrieking in his ear with excitement as she waved at each character on each float. "Ellllsssssaaaa! Elllsssaaaa! "Woooooodyyyyy!" Wooooooddddyyyyy!" Imagine wearing headphones and having that projected at full volume in your ears, and you'll begin to get the effect. (Note: this is probably way down on his list of favorite moments...) But she actually thought with all those lights and music and other shrieking children that Belle and Ariel and Mickey could hear HER. And in her heart, she went away with that memory.

My mom made me promise to go on "It's a Small World" and sing along.

Steven clearly loved that, too. <must be read in an extremely sarcastic voice>

I even made him continue another Fremer family tradition which is to pose next to a statue and imitate it as well as you can.

What do you think? How did he do? The guy on the right is way cuter than the guy on the left, though, don't you think?

He's such a good sport! And it was so fun surprising him with the picture from Splash Mountain. As we were about to go down the big dip, he said, "Put your hands up!" Little did he know that I had other plans...

I'm in the back, sneaking a kiss on his neck with my Minnie ears on.

I got to get a little something for Autumn Elizabeth to introduce her to The Magic, but I can't say what since I haven't given it to her yet. And I knew exactly what I wanted for my souvenir of this trip. I was so excited when Steven found it, I (almost) shrieked in his ear. With the Magic of Disney, I got to be a member of the Explorers' Club, too.

If you don't know the significance of this, that means that you've never seen "UP". And you need to stop what you're doing and  watch it - at least the first 10-15 minutes - RIGHT NOW! 

May we many more adventures together, Schmoopy!