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 Unpack the Love

Earlier this week, I had a Terrible, Horrible, No Good, Very Bad Day. Steven had left for work already - as every day during harvest season. Sometimes, I feel emotional and down for no particular reason. I know. I know. I have a pretty good reason: I have brain cancer.

But I have brain cancer all the time. And most of the time, I go about my day and don't even think about it.
Okay, I call bullshit on myself. I do think about it, but I don't DWELL on it.

But this particular morning, it was overwhelming. I was sad, and depressed, and....lonely. Honestly, all I wanted to do is lay in bed, safe under the covers, Steven's arms wrapped around me. He can't say, "It will all be okay.", but he could say, "I'm here for you."

Only he couldn't. I was alone In our new house, and he was working hard for Harvest 2015,

So, I did the next best I could think of: I pulled his out-of-shape, holey sweater from on top of his dresser and put it on me. I took a big sniff of it first - to smell the Schmoopy scent. And then I just curled up in my bed, and cried. Big, juicy tears rolled down my face, and I used the arms of Steven's sweater to continually wipe them away. Also, to wipe my sniveling nose. (Sorry, Schmoopy! I promised that I washed it after! See!)

What do you think? Circa 1980's?

After a good, cleansing cry, I lay in there in bed, just thinking through my mood and what was going on. It wasn't the end of the world, but I had every right to have a meltdown. I didn't even have to use my #cancercard. Moving is stressful. But I was crying about my cancer - still feeling sad, depressed, and alone.

As I looked out in the distance and contemplated my situation, I remembered how scared and upset I was when I first got my diagnosis. And how many of you rallied around me, surrounding me love and prayers, and strength. And in a "made-for-t.v.movie moment", I decided to get up out of bed and find the box that we had in the garage that I labelled: "June - post dx inspiration - study".

Study was referring to the location that box would go, but now that I think about it, it works as a command, too. 

I wrangled with the boxes in our garage and found the right one and hauled off to the study - which is a fancy word for "Steven's and June's shared office where he'll drive me crazy watching Golden State Warriors post-season highlights (without headphones), and I'll end up in the family room using my computer". (It's just a convenient shorthand.)

I started unpacking the box and there were two posters on the top - one was from our team for Relay for Life (Go, Wine Girls!), and one was given to me by Jeanne Mullins. She dropped it off and said, "I was just practicing in my calligraphy class, and I thought of you. I lost it right then and there, and sobbed. Jeanne was diagnosed with advanced pancreatic cancer about a month after she gave that to me, and died a peaceful death surrounded by the love of her family. Again, this sounds like a Lifetime movie script, but this really happened just like I'm writing this.

I'm not giving up, Jeanne. But thank you for reminding me that I can scream and cry. 

Go figure, Steven came home right then, as I stood in our study/office and said, "What's wrong?" I suggested that w go for a walk in a few minutes, and I could talk to him about it. The answer to that question was more than a one-liner. We had a good walk around the vineyard with the doggies. I held his purple, calloused, and blistered hand from harvest work, and talked & cried. Probably, he didn't understand half of what I said, but that's okay. He was there for me.

The next day, I started to reconstruct the corner I had in my old house, with all the treasures and reminders from all of you. I finished today.

This is my new sacred corner - filled with love! The corkboard on the top has my goals for this year

Top Shelf: Yes, that is my radiation mask in a purple wig and Minnie Mouse ears.

Shelf Two: Many angels and ninjas, etc.....all keeping Dr. Awesomesauce company

Shelf three: The Stars of The Kick-Ass Ninja Adventures of June/The Outlier .<---click for the story

And so many other treasures of positivity!

Instead of putting up each card, letter, and email you sent me, I put in a container customized for me that's labelled #MFBCFNW. As I put each thing inside, I reread the sweet, loving, thoughtful things people took the time to send me. Many of you included phone numbers so I can call whenever I need anything. It struck me like a sledgehammer that am never alone.

Ninja Stars on the left, all your loving messages on the right. SQUIRREL!

[I also looked at last year's goals that I had and decided to add pictures of the things I had accomplished, despite the odds. I'll have to include that in a future post, I think!]

And then...and then...this morning I woke up to THIS on my timeline on Facebook:

In case you were wondering, that was a spectacular way to start my day!

When I start feeling sad, and depressed, and lonely again, instead of going into my bed and hiding under the covers, I'm going to go into my new sacred spot and STUDY in my study. Assuming, Steven's not watching Golden State Warriors highlights...

The Incredibly Long Post in Which I Tell you About My Haircut - and possibly other things

My treatment officially start tomorrow. I have a "simulation session" today - which sounds like fun...like when pilots get to fly fake planes, but they are in no real danger of crashing?

I think it might not be so fun for me. But hey, if it's good enough for Scully, it's definitely good enough for my radiology technicians!

In preparation for the start of treatment, I had a few things on my to do list;
1) Get a flu shot. Done! (Please get this done! It doesn't just help you. It helps everyone around you whose health might be compromised.)
2) Eat as healthy as possible. Done! (Who knew that kale, carrots, ginger, and celery, etc. could taste so good in liquid form? Thank you again, Mom & Dad, for the awesome ninja juice juicer!)
3 ) Walk every day to be in kick-ass, ninja condition for the battle ahead. Done! (Oh, and thank you, Steven, for letting me hold your hand every day on our walks. It's mostly 'cause I love you, but also because my anti-seizure meds make me a little uncoordinated, and I'd hate to fall down and crack my head open on the concrete. Would that actually be ironic? I don't know. Damn you, Alanis Morisette! You've left us so confused!)

I had one thing left to do yesterday...

4) Get a shorter haircut. Because a) I'm going to lose patches of my hair from the radiation and I thought it would make the transition less traumatic. Besides, I may be able to do an elaborate comb-over. (The rest you are laughing, but there are men of "a certain age" that are nodding right along with me, thinking this is a GREAT idea!) and b) Dealing with the sheer amount of weight I had on my head was ridiculous. I still get a smile on my face thinking about whoever it was that had to deal with my hair going into my surgery. Don't get me wrong. I don't remember one iota of it.

But I woke up like this:

 

Pay no attention to the expression in my eyes. I was still very loopy from the meds they had me on. Focus on the fountain of hair that was sticking out of the top of that bandage. And some poor sap was responsible for dealing with that??? Can you just picture that conversation?

Nurse 1: Hey, you! Uh...how are we going to get this bandage around Rapunzel's head to wrap this wound? 

Nurse 2: Oh, shit! Just wrap it up and let it stick out the top. Maybe she'll get a haircut after she sees how ridiculous she looks! 

 [I'm assuming it was nurses since we KNOW that no doctor has to make decisions about what to do with the hair that is in the way and such. ]

I take that back...because they didn't shave my whole side of the head. Which they could have. Someone carefully shaved a neat corridor just along the incision line. And it's hardly noticeable with the poofball that is my hair. Now, that I think about it, that was probably nurses, too. So, give it up for the nurses at Good Sam Hospital! 

When I made the decision to get the haircut, I solicited recommendations on Facebook, and I got a great number of leads for a potential stylist who could deal with my tender head and my gnarly wound from the surgery. Only fucking Facebook sucks, and I had to spend at least one hour trying to find the fucking status update with all the comments that I POSTED in order to retrieve the information. Seriously. Facebook fails at life. I'm seriously considering telling Facebook to suck it and going with twitter (So, follow me on twitter if you like that sort of thing!)

And...we're back! Haircut...recommendations...I remember what i was saying...

I decided to go with Jennifer at All About Me Kids Salon. No, I'm not a kid...but it is all about me after all, isn't it? Rachael (Lavezzo) Sims Snedecor... recommended her and assured me that she had tons of experience with cancer patients. As it turns out, she cuts hair for a lot of autistic kids, so...if you're looking for a kind, gentle, otherworldly empathetic person to do some hair...look no further. And she does a fair number of adults, too. I was disappointed that I didn't sit in the race car, but I got over it quickly.

First, we took care of the snip-snip to cut off the 10" pony tail to donate to Locks of Love. It doesn't look like 10", but my hair is so curly!!!  Some kid with alopecia is going to score the jackpot! Not only is this hair curly, but it was once worn by a certified Kick-Ass Ninja Warrior! Hello?!?!

Then, Jennifer went to town cutting my hair. I had shown her some pictures of what I wanted, and she nailed it! and while she cut my hair, she was sooooo sweet and genuine and put me completely at ease. As chance would have it, her father has just finished his own radiation treatment for a head tumor. Only his was right behind his eye, so (if your squeemish, you might want to skip the next few sentences) in addition to the "mask of horror/torture" that I have got to wear, he also had to slide a metal plate under his eyelid...every fucking time. 

So, you won't hear me complaining about the mask because as the old cliche goes, "It could always be worse!" Shit. That just gets to me. A fucking metal plate on his eye. 

Fast forward and Jennifer has finished, and there were hugs and I'm convinced that she is something not of the earth. I can't thank you enough, Jennifer, for your generous spirit and time. 

All that I can do is this: when someone asks me, "Where did you get that cute, sassy haircut?" I can say, "Jennifer at All About Me Kids Salon!"

Just take a moment to scroll up to the post-surgery, drugged out version of me and compare to this last picture. This nothing short of miracle, no?