The One in Which I Tell You that I'm not Stable

Not so much "Yippee Skippee" this time. 

Okay, I know many of you know that I had my MRI on Monday, I still haven't posted any results. I usually post a cheery update saying "I'm stable! Yippee Skippee!", so you may have already gotten the gist that...the scan was not stable. Well, let me be more specific. Tuesday morning, we heard from my oncologist - My MRI scan this week showed a change from the last one that I had in July. Just a reminder, in this case: NO change is good. Change is not good. So, I spent a great deal of time trying not to freak out. I meditated and walked with Steven and tried not to cry TOO much...because we really didn't know very much yet. (P.S. Still don't) The oncologist was just reading the report that he got from Good Sam's radiology department. He hadn't seen the scan itself yet. All he really said was there was "a change".

In the late afternoon, we heard from our radiologist (Dr. Rad) - same thing. Hadn't seen the scan itself, but from the report, he was more reassuring and told us a little more information based on that report. Through speaker phone, Steven and I both peppered him with questions, and he used words like, "minor", "subtle", and "very mild" flare/inflammation at the tumor site. What made me feel the most reassured is he said: "By no means, is this definitely a recurrence of the tumor". No, I'm not paraphrasing. That's exactly what he said. I know because I wrote it down. (More about that later below)

I can't tell you how reassuring all those words were. I felt like I could breathe again.

We still have a lot of meetings and research to do, but for now, I "stay the course". I will continue the Temodar cycles and have an MRI every other month. We have appointments with both the Los Gatos oncologist and the neuro-oncologist at UCSF next week. We are considering seeking yet another doctor for opinions. It can't hurt, right?

What we know now, is this: The radiologist said the slight inflammation may be "radiation necrosis", which sounds really spooky and Halloweeny, so I guess we can look at it as timely and festive? <cue spooky noises and music>

I know radiation necrosis isn't something to joke about, but it's better than a recurrence. And P.S. Piss off if you don't find the same things funny that I do. If you haven't figured it out yet, I have a weird(-ish) sense of humor.

Just kidding!

What seemed a little eerie - is that, (I kid you not), I woke up Tuesday and was randomly thinking of how lucky I am - considering the circumstances. I am relatively unimpaired RIGHT NOW from my illness. And you all know how I feel about the RIGHT NOW.

It is what matters. RIGHT NOW.

I can walk unimpaired and without support.In fact, I just started doing this 30-day Yoga Challenge with Adrienne on Youtube, and I am kicking ass - or is she kicking my ass? Either way, I'm doing downward dogs and cobras, and planks to beat the band. 

I'm not physically disabled right now.

 I can talk relatively unimpaired, although, I have some issues with that (especially when I'm tired or just waking up). But most of the time... the important thing is that I can still communicate my thoughts and feelings. And, not to brag or anything, but my mind is still pretty sharp.

Yes, there are some differences. My short term memory is pretty shitty. But I've learned to adapt. I carry notebooks. (Surprisingly, despite my love of technology, I like the ole' paper and pen to jot down things that I need to remember. I call it my "paper brain". So, if you tell me something you want me to remember, and I don't write it down, I have no intention of remembering it. Whoops! I gave away a little secret! (Shhhh! maybe some of you didn't catch on....) <slinking away>

Nothing to see here! Move along!

Okay, as I think about it, all these thoughts were really not "random". I was trying to keep my perspective while I waited for the news about my MRI. And guess what! That is all true today. After hearing the news. The fact that the scan was not "stable" didn't change that.

Yes. It threw us for a loop, and Steven and I needed some time to process it. But if we stay in the present and not start projecting into the future, we are more than okay. We are lucky.

But....but....I could leave at that, and wrap this up in a big bow, but I feel like I need to share with you....

 In a cosmic joke of some kind (P.S. Cosmos, I don't think it's funny AT ALL, and if you could knock it off, that would be GREAT!), we are having some other challenges as a family that my sister-in-love and husband are dealing with right now. The cliche says, "When it rains, it pours..." I know we have a serious drought here in California, but if you could manage to have some drops land on another family, we would be so grateful. Thanks! (I think Steven and his sister have already proven that they're studs. No need to make people jealous.)

The Studs! Look! They even have weapons! Look out!

I had to scrounge around in my Ninja Warrior toolkit and find my Zen Manual. It's a little dog-eared, and I'm flipping through it like mad. Yes, I'm soaking up the message: Worrying never changes the outcome. 

But this time, I'm also focusing on another message: Together, we have so much more strength.
My love goes out to all my Warriors and Angels, and I send my love and positivity to my family. We are so strong. We will get through this!

Okay, so technically Pam & Steven aren't twins, but they are AWESOME!

Love, June Xoxoxo #MFBCFNW

The One in Which I Explain the Importance of my Ninja Stars

So, I had this high school friend, Pamela H....the kind of friend with whom you exchanged notes throughout the day in high school, passing in the hallway. (Kiddies, this was an archaic custom that happened before cell phones and texting...I KNOW! How we suffered!). We were are such geeks, that I highly doubt that anyone else's notes were filled with the same kind of socio-political commentary that ours had. (We were 17 years old! Jeebus!)

I went off to college in D.C. to study political science (go figure!) , and then my parents moved far away from our hometown, so I lost contact with pretty much all of my high school friends throughout the following years. Until Facebook happened. Suddenly, I was able to reconnect with so many of my hometown friends - and just in time for our <mumble,mumble> reunion! What a great time, reconnecting In Real Life with these people!

How is it that the one picture I have of Pamela at the reunion, she is not facing the camera??? Oy!

I look at this picture now and see so many faces that have reached out to me in the last 3 months and filled me with so much support and love and encouragement...Just give me a minute...
<grabbing some tissues>  Big Hugs & Smooches to all of you! You have no idea how much you have helped me through this challenging time.

But I digress...Shocking, I know. I usually am so good at staying on point and being succinct...
<snortle!> Hey, give me credit because: 1) I always have a point and 2) I eventually get there!

Pamela lives in New York State now in a place that sounds like Shakespeare lived there at one time - which totally makes sense because she has always been wicked smart and had a love of literature. I mean, she studied Latin in H.S. - on purpose! And she's a librarian! (Yes, kiddies, these still exist today in some locations! Google that Shit if you don't know what it is.) It was amazing at the reunion how quickly we slipped back into our conversations, like no time at passed at all. It was difficult to get into anything deep (see picture above for evidence), but I had heard that she was going through her own Ninja Warrior Caregiver Superhero experience back then...

So, I guess it shouldn't have been a surprise to me at all that a package arrived from her "Shakespeare-town" not long after I went public about my diagnosis. It was filled with thoughtful, lovely treasures to amuse and comfort me, including this:

A handy camo tote bag, filled with little ninja stars to remind me that I had permission to FEEL many things on this journey. In fact, it was a given.

What she didn't know at the time was that she had sparked an idea within me: 1) I could learn to make ninja stars myself. Any self-respecting Ninja Warrior should know their way around their tools and improvise as required, right? and 2) These could be a physical manifestation of not just my feelings, but my hopes and inspiration and strength...

And that's how the idea was born to make my own Ninja Stars. Okay...so, now what?

Step One: Go on the Interwebs and search youtube for a tutorial on making Ninja Stars. (It probably doesn't surprise the kiddies out there that I had many choices.) I chose a simple, straight-forward one that seemed to have a lot of views already. I'm a visual learner, and this worked for me.

Step Two: Experiment with different paper to find the ones that work for you. Cardstock was too thick for me; construction paper was a little too flimsy. The best for me is the already square scrapbooking paper, but I didn't discover this until late in the game...

Step Three: Go for it!

I started making ninja stars before every radiation treatment. I wrote inspirational words or notes to reflect my mood at the time. Steven suggested about 2/3 of the way through that I date them as a record of what I was feeling, but it was too late. And besides, I have this blog if I ever need to look back for that, right?

Then I made ninja stars for all of the radiation technicians and nurses who I saw ever day with a note telling them how grateful I was for their compassion and care, and reminding them that they were Superheroes, too! It got to be a routine: they would ask me what I had on my ninja star that day, and I would clutch it across my chest while strapped into The Mask, pinned against the table, and being zappity-zapped.

Part of my collection - I keep finding them in pockets and purses...

They have been such a source of comfort and strength and focus for me. And now that my initial treatment is done, I guess I'm a little addicted. I started making ninja stars for others - my Carson School Family and my Steven Kent Family... These say, "Live Laugh Love". It's a simple message, but when it comes down to it, it's pretty simple.

I wish that for all of you  - 

not just during this holiday season, but every day.