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 Talk About Continuing Chemo (Temodar)

Disclaimer: Use of Temodar will NOT result in this kick-ass blue color hair. 

I had so little experience with doctors and hospitals before my cancer. The only other hospitalizations I had were for the birth of my babies - and I only did that three times - not four - because we had Katherine at home with a midwife. (For real. Yes, on purpose. And it was my best birthing experience, FYI) But I'm not writing to open a can of worms about that subject...

I'm afraid I might be opening a can of worms on this other subject, but....what can I do? I'm just laying myself out there, speaking MY truth. Which is the whole point of this blog.

Every other experience I've ever had with a doctor - for myself or my children - I went in, I had an examination, the doctor diagnosed me, and he/she told me what to do. Whether it was prescribed medication or a humidifier or ice or the RICE diet...So, this whole GBM experience has thrown me for a loop. And caused some a shit-ton of serious anxiety.

I've followed the "Standard Course of Treatment" or the "Gold Standard" in the U.S. right now with treating a Grade IV glioblastoma multiforme. I was fortunate enough that my tumor was in an area that was operable, so the first step was resection. Then 6 weeks of radiation (5 days a week) and chemo, Temodar (7 days of week). This was followed by 6 months of Temodar, 5 days on and 23 days off. I also have something about the make-up of my tumor that supposed to make my cancer cells more responsive to the Temodar ... so, that's good, right? That 6th cycle was in the month of June...

and then...

About two months ago, I started hearing from my doctors that they were thinking of continuing the Temodar cycles another 6 months: cycles 7 - 12. (Wha'?!?!) My Neuro-oncologist said in a phone consult in June, that after the 6th cycle is a period of "negotiation". (I wondered what that meant exactly...) And when we met with her last Monday, she reiterated that it really was OUR choice if we wanted to continue with the treatments or move to a "wait and see" approach. I would still have my MRI's every other month - and there would be no medical intervention (surgery/chemo, clinical trial, etc) unless/until there was a change on the scan [i.e. a recurrence]. She was comfortable with "graduating" me from the Temodar cycles. [By the way, she said three of the four NO's at UCSF would recommend the continuation of the treatment. (It doesn't take a genius to figure out who the fourth doctor is, does it?)]

In the last two visits with my local oncologist, he characterized himself as "aggressive" and recommended the additional 6 months. (He works closely with the UCSF NO, so he already knew what her recommendation would be.)  The Temodar appears to be "working" - meaning, we're not seeing new growth. (note: We are not seeing shrinkage either.) But  - as I've said more than once in my blog -  with GBM, where growth is the norm (practically inevitable), and it's usually fast and furious, no growth is a good thing. And just so you know, if/when we stop the Temodar, we wouldn't go back to it if I showed signs of growth. They both said it makes no sense to "take a break".

I just wasn't expecting to have a decision so major plopped in our laps like that. It's required a lot of researching, talking, and reading, and crying...

I know there are people out there that opt for NO Western/Modern Medicine and opt for Alternative Options from the get go. Others trust only in the science of medicine and don't explore alternatives. For them, the decision would be easy. What has made it so very difficult is that I believe that I should take the best that "Western/Modern Medicine" has to offer, and do our damnedest to augment that with what we can as patients: the stuff we have control over.

I've made it clear from the beginning that I believe in an amalgam of both. I let the doctors tell me what is available - my "best options" with scientific evidence to back it up, while I use all my resources to do everything I can do to compliment that - and I believe it makes a difference. The focus on the whole person: the mind, the body, and the spirit. Nutrition, Fitness, Mindful Meditation, Yoga, Tapping into the positivity and love in me and the people around me...You've read it/heard it/seen it from me for the last nine months, This is nothing new.

And suddenly, the doctors are saying, "Yea...this whole modern medicine part...you're going to need to decide if you want to continue this another 6 months or not..." Wait...What?!?! Because, guess what! They don't have a fucking clue at what really works beyond this. Because there are no long-term studies and completed clinical trials regarding this issue.  I mean, there are some promising stuff coming down the pike, but they have no real academic, completed Phase III trials that say THIS is more effective than THAT. (Except Temodar/radiation treatments) Part of what's so complicated is that there are so many variables. There are ~120 different kinds of brain tumors, but let's just focus on GBM. Each patient has a unique set of circumstances - age, fitness level, where the tumor is, what the genetic makeup of the tumor is... I've read and read and read...I have to take breaks because it makes me want to cry. I can't avoid the numbers. I have to keep reminding myself that I'm not a number! Let's just say that it's a sucky situation and leave it at that.The good news is the numbers are getting slightly better. I'm still working on being the Outlier, though...

MAYBE the Temodar is the reason I have not shown growth at the tumor site. Or maybe it's one of the 100 things I do every day to help my body heal?  Or maybe it's a combination of things? Who knows? I can tell you who doesn't know: my doctors. ANY doctors. In the world.

Oh, if only he were really a doctor...but I digress....

This is some heavy shit. "Quality of Life' - there's a phrase that gets knocked around a lot with people with chronic/terminal illnesses.. It's a decision of: do the negative side effects of a treatment make life so miserable, it's not worth it?

Steven and I have spent hours talking about this decision, but in the end, he said, "I can't answer that question for you. I don't know what it's like..." I know we'll be revisiting this conversation again in the future. This is some intense, scary shit. If I think of it as a life-or-death decision, I just cry and am useless. So, let's not do that, k?

Right now, the "quality of life" question is a no-brainer. I decided to continue with the treatment. Yes, I am physically weaker, and when I stop taking the chemo, it will take some time to build up my strength again.  I researched the hell out of Temodar and current practice - and although it's all over the map  - there is a lot of precedence for continuing through 12 months - even longer, if it continues to be effective, and I am still coping well with toxicity (as measured by blood work - platelet counts, etc). But we'll deal with that when we come to it. The fact that I have no shrinkage WITH the Temodar makes me wonder if I didn't have any medical intervention at all...

Maybe this is TMI, but I'm willing to live through a couple of days per month in bed with: nausea, constipation, and extreme fatigue, if that means that I have more months with my family. It also requires that we are strategic about plans leading up to and just after any cycle. And when I told my oncologist about our trip to Disneyland and the accommodations and adjustments we made, I said, "We're learning all the time about how to live with cancer." He looked me sincerely in the eyes and said, "That's what your life is going to be like. Forever." 

There's a technical term for that. It's called: No Bullshit.

No guarantees, but I know that I will leave no stone unturned. And if/when Temodar stops working (Kiddos, sad to say that it seems to always stop working eventually), we'll have more difficult decisions than this because ...did I mention that the doctors can't tell us, "Just take two pills and call me in the morning." ?

That's what it means to have a terminal disease without a cure.

P.S. I noticed that I used the word "cry" a lot as I'm rereading this post. #cancercard #freepass

The One in Which I Tell Y'all About the Relay for Life in Livermore

Team picture (actually at the end of the event) Theme: pajamas! Mine say: "Lazy Days, Ninja Nights" Rawwr!

Livermore Relay for Life, 2015

A few months back, Kate Gazzuolo (part of our SKW family) sent me an email asking if I was interested in joining their Relay for Life team benefiting the American Cancer Society this year. They've been doing it for about 5 years  - her immediate family and several members of the Steven Kent Winery Family. She totally understood if I was not up to it, but they wanted me to know that they had changed the team name in my honor from "Wine Girls" to "June's Wine Girl Ninja Warriors". (Have I mentioned how much the Steven Kent Winery Family ROCKS?  Probably not enough! Well, they ROCK!) I told her that I would love to join the team, raise some money, and play it by ear about how much I could actually walk on that day. Done deal! 

  

Katie Gazzuolo - Our Team Captain, and Cindy Turchino - Tasting Room Manager & Professional Pirate

I set up my page on the American Cancer Society website and solicited donations - and once again, family and friends - June's Warriors - humbled me with their generosity and support. <grabs tissues> [note to self: buy stock in Kleenex] Big Ninja Warrior kisses & hugs!!!

I had never participated in a Relay for Life event (I know many of those Warriors out there have - so forgive me if I bore you by describing some of the details - at least for this one.). The first thing I did was check in. If you are a Survivor (Yay, me!), you got a stick with a sign saying how long you've been a survivor. The two survivors in front of me said with confidence "37 years"...then "40 years". When it was my turn, the young girl who was volunteering to write on the signs looked expectantly at me. "um...9 months." She paused a moment, looked at the adult seated next to her for guidance - who sweetly just gave her a reassuring nod, a signal as if to say: "Well, write that down, honey!" I thought I was going to win a prize for being the least amount of time as I looked at the Survivor Signs around me, but then the beautiful Linda Santos and Sandy Casey showed up. Her sign said, "8 months". Dammit! I don't even win THAT prize? Well, as it turned out, neither of us would have won that prize (Kiddies -I'm totally making this up. There is NO prize for that distinction. I have to be honest.  I just don't want you to be bitterly disappointed if you ever go to one of these events and have just been diagnosed or something.) Anyway, we spotted a man with "7 months" a little later on. But many more inspiring signs with decades of survival!

I love Steven & Sandy's beauty pageant sashes for being Caregivers! At least Sandy has the pageant stance down!

The Relay isn't really a "relay" in the truest sense of the word. At least one person from the team has to be out on the track, walking laps, at all times for the 12 hours, but there's no baton passed or anything. We had some lovely volunteers that came by to help and walk some laps for us - Thank you so much!!! I even had a former student come up in the middle of the night to volunteer! I'm ...really speechless about this. But I could cry some more if I weren't out of tissues....We love you!!! and NEEDED you! 

Especially since some people on our team got involved in an hour or two of playing a "cornhole" game...which apparently means something completely different to most people than it did to me. I always called that game Beanbag Toss (throwing a beanbag into a hole in a board). "Cornhole"? Well...Google that Shit or use your imagination, but that is NOT what I thought that meant. Come on! I know I'm not the only one out there...There were themes for all the laps - which my team captain assured me was not necessary - but I am actually a lover of themes [Let's just say "hokey" has been used in a sentence about me more than once.] and chose ones that I wanted to participate in...especially the Super Hero one. Hello??? Who doesn't want to dress like a super hero? Apparently, 99.9% of the participants. But I wore my Ninja Warrior costume with pride!

That's right! Don't fuck with me, Cancer! 'Cause you don't know who you're dealing with! Ninjas are stealthy like that!

In addition to the funds we raised online, each booth had raffle items and other ways to make money. Our team had this beautiful basket with a wine tasting package of local wineries, as well as a table of used books.

Notice Steven in the background (look for the bald head), "working hard", reading one of the books he found on the table. That's alright. Caregivers deserve breaks for sure! Love you, Schmoopy!  Xoxoxo

The team also had a bunch of karate boards with CANCER written on them for people to karate chop CANCER.

Sharyn Bell, karate chopping Cancer's ass while Katie bravely holds the plank.

The other theme time that I really wanted to be a part of was the Luminarias. People decorate paper bags with names of treasured loved ones that have passed away or people currently Warriors living with Cancer. They light the bags along the track (with glow sticks) at dark and you walk along, reading the names and reflecting on how many people that Cancer has touched.  It's very powerful when you see them all lined up, each representing a father, brother, son, mother, sister, daughter...[You know what, Cancer? You suck! #sorrynotsorry]

Ninja Carol honored me with this luminaria. So sweet! 

 I had ordered my bag online for Jeannie Mullins - I didn't realize that we could decorate our own, so a volunteer did it ahead of time. It's a little sloppy, but Jeannie would understand...she taught 2nd graders, after all!
Thank you to my wonderful team/family for inviting us to be a part of this!
And our little but mighty team raised over $6,608!  The whole event raised: $136,458.98

Disclaimer: Almost all of the photos in this blog post have been stolen downloaded from someone else's Facebook page. Sharyn Bell, the Gazzuolo family, Cindy Turchino... thank you for being such good photographers and recording these precious moments. I have found that, since my diagnosis, I forget to take pictures because it distracts me from being IN THE MOMENT. Maybe it's the cancer. Maybe it's the sense of urgency to be present? Which is kind of the same thing, if I think about it...Whatever. I'm using my #cancercard to justify stealing other people's stuff. k? #freepass

The One in Which I Talk About my New Goals

I know it's completely normal to feel fear when one is diagnosed with cancer. I've read it, heard it, and experienced it. What one fears is not the same for everyone. That's seems normal as well. I remember my friend, Jeanne, who recently passed from pancreatic cancer, expressed a lot of fear about the pain in the end. That is not the fear that I try to push to the dark recesses of my mind. Maybe I'm naive, but I believe there is enough modern medicine out there for me to avoid a lot of pain in the end. If I'm wrong, don't feel the need to set me straight. This is one of those situations where ignorance is truly bliss.

As much as I try to avoid it, I do have fear that bubbles up to the surface.  My fear is that I'm going to miss so many things in life by dying "young". REALLY young people who are reading this blog are thinking, "What?!?! Is she off her nut? She's 50 years old! That's not young!" But older people understand what I'm saying. I'm a mother of four children, adults (mostly): 28, 24, 22, and 20. But I've got so much of their lives to see. I've been married 25 lucky years to my Schmoopy, but I thought I had at least double that to fill our lives with memories. I fear missing the weddings, the births, the family gatherings at Game Nights, Thanksgiving and Christmas, trips with my Schmoopy...or just sitting out in the evening around a fire pit and talking and laughing...

I swear that my tumor must be near some area of my brain that controls emotions because I cry at the drop of a hat, and I can't seem to control it. I mean really CRY - the kind of crying where you can't even talk so that anyone can understand what you're saying. And I breathe deep when it starts to come on, thinking that I will get my words out before the waterworks start, but it's hopeless. I cry like that at some point on most walks with Steven. I used to apologize, but now he tells me it wouldn't feel like an official walk if I didn't cry at least once. I told you our walks are like my therapy!

So, know when I write about this subject, I'm a mess: tears streaming down my face and strangled sobs in my throat. #sorrynotsorry

<grabbing tissues and wiping my face dry>
<Deep Breaths>

When I was first diagnosed and (mostly) recovered from my surgery, and I decided that I was a Mother Fucking Brain Cancer Fighting Ninja Warrior! (Rawwr!) I took a bulletin board out of the garage and re-purposed it. I hung it up and thought about everything that I wanted to experience in the next 6 months - things that I was fighting for.

As cards and email and letters poured in from June's Warriors, I hung those up around the board and I regularly gazed at that corner as I was getting ready for the day.

(Kiddies, Here's a little tip for you: you gain a lot more time in your day if you shave - or lose- your hair. I must save 40 - 60 min. a day not having to fuss with my hair anymore.)

This weekend the family went down to watch Katherine graduate from UC Santa Barbara.  As I was waiting for Katherine to walk down the aisle for her commencement, I realized that this was the last event that I had pinned to my bulletin board. As I started to tear up, I tried to express this to my father and husband (whom I was sitting between), and after several attempts to talk through my blubbering tears, I got the message across. My father leaned over and gave me a big hug and kiss on the head. (A moment I wouldn't ever want to miss - see how that works?)

Both of them said the same thing: "Better get some new goals up there ASAP!" As soon as I got home from UCSB, I started my latest chemo cycle, so I'm not all that spry, but the more that I've been thinking about it, the more that this assignment seemed too pressing to wait until my chemo cycle was over on Friday.

Yesterday, I unpinned each card and message from all of you - reread them and smiled (yes, and cried - #freepass!), as well as my pictures of my goals and tucked them in a basket that I now have in my "meditation corner". The positive energy emanating from that basket must be off the charts!

By the time I finished that, I had to lie down, take some anti-nausea meds, and binge watch some more "Orange is the New Black" and nap. So, I woke up this morning with a blank bulletin board. That seemed like really bad karma, so I set to work importing and printing my new goals.

New board includes room for more goals as I think of them...

The first time I did this, I was afraid to go too far beyond 6 months. Why? I'm not sure. I guess that my prognosis was so shitty that I couldn't get my brain to dream beyond that. This time, I've gone into next year. My last goal up on the board is to attend Autumn Elizabeth's first birthday. But I think maybe I'm allowing the "F" word (FEAR - what did you think I was talking about?!) to interfere with my goals. And what do I really have to lose by planning for something in 2017, 2018? Wouldn't it be something if I were to witness Autumn's first dance at HER wedding?

April & Coffey's first dance - (Notice my parents in the background.)

A ninja warrior can dream, can't she? Yes, she can!

The One in Which I Explain What the #MFBCFNW is Fighting FOR not AGAINST

A couple months ago, when I started to venture out on the interwebs, seeking out like-minded Brain Cancer Survivors, I stumbled across the wonderful blog, The Brain Chancery, which I've shared with you before. And poking around on his site, I discovered an entry that really made me think. And the same issue has come up for me many times as I read other survivors blogs, tweets, etc.

First of all: I have to say that every cancer survivor is on his/her own journey. And I'm in NO WAY judging anyone that is taking a different path. Everyone has to figure out what is right for them - physically, mentally, spiritually...

But I felt like I connected with so much of the attitude and thinking of this guy, Chad, that he really made me take pause with his entry: We Need to Talk: It's About Brandon. Kiddies, I could tell you nothing about it and force you to read it yourself. But I know some of you are lazy busy, and won't get around to it. And it's really at the heart of what I want to say today -   So, I'll give you a little Cliff Notes version here:

Chad jokes about naming his cancer "Brandon", but he gets at a more serious topic of the tendency to anthropomorphize (Dang! That was a hard word for me to say before my brain tumor!) CANCER itself.   Kiddies, "anthropomorphizing" is when you give a human form or personality to something that is not human.  For example:

Like when we have animals act like humans in cartoons and such...

This phenomenon is very common in the Cancer Community. We hear and see things like: "I hate cancer!" and "Cancer sucks!" And I'm not saying that it is a wrong approach. I'm just saying that I tend to agree with Chad with Brain Chancery that it feels a bit silly...
or maybe not silly, but.... unhelpful(?) to me. Because CANCER is just random fucking cells that are doing what they do. There's no reason it's happening. They aren't "out to get me." So, it seems (to me) like a colossal waste of time and energy to spend being raging pissed of them and focusing my attention on them.

Which brings me to my next point... 
(I know what you're thinking...)
So, June! Why are you calling yourself a Ninja Warrior? And more specifically a Mother Fuckin' Brain Cancer Fighting Ninja Warrior? (#mfbcfnw) Huh? HUH?

So, I feel like I need to clear up the confusion. I use the Ninja Warrior persona to represent my Inner Super Hero Self who can call upon the powers within me to fight. But I'm not fighting against cancer. I'm fighting for my LIFE.

As a Ninja Warrior, I'm calling upon all of the tools in my MIND/BODY/SPIRIT to find balance...reason...patience...peace, love...joy...hope...every mother fuckin' weapon in my arsenal ---
whatever I need at that moment to fight for my life. But notice that my "weapons" are positive.
So, yes, I'm fighting brain cancer because that's what's standing between me and life. but I'm not spending my days swinging numchucks at effigies of glioblastoma multiforme (GBM) cells (although it's fun to imagine it at times...)

You probably noticed that all the ninja stars I create have positive messages on them. Yesterday, the one I held during my first post-treatment MRI said: Hope and Joy on one side and #beinthepresent on the other. (and of courses, #mfbcfnw) Even the cursing and the "RAWWWR!ing" are my expressions of power, not anger. Does that make sense?

My mom gave me that adorable little pocket-size ninja! Thanks, Mom!

 Maybe it doesn't work for someone else - but I believe, for ME, the real BADASS powers lie in the positive! And this #MFBCFNW is going to keep using them to FIGHT FOR MY LIFE!

The real power is looking at life's challenges and saying, You know what? I'm going to
LIVE, LAUGH, LOVE for as long as I can and not waste my time focused on the stuff that I:
1) can't control.
2) don't add meaning/joy/happiness to my life.

Carry on, my fellow Ninja Warriors! Go forth, and be BADASS!

______________________________________________________________________

P.S. I just found and read another entry from Brain Chancery about this subject, and I'm convinced that we are twins separated at birth - except he's 11 years younger than me. But why quibble?

The One in Which I Distract Myself from My Scanxiety - and just try and CHILL OUT.

Tomorrow (Friday, 1/9/15) at 11:00 a.m., I will be stuffed into a metal and plastic tube - having high-tech stuff swirling around my head, clicking and whirring and knocking - scanning the New June's Brain. or June's New Brain? Whatever. You get the idea. The point is...I'm anxious, scared, freaked out...and not just because I'm claustrophobic.

You all know I'm claustrophobic, right? But ANYONE in that situation would be grateful for this beautiful, beautiful little white pill called Ativan that makes me able to even think about the situation now without breaking out in hives. (Okay, I cannot tell I lie: I just googled who invented Ativan. Three cheers to Stanley C. Bell! You rocked, Smartypants Scientist!)

Just looking at this picture makes my heart beat a little faster! GAH!

I suppose whoever invented the MRI machine deserves a lot of credit, too. Okayyyyy...So, I'll google it... Here ya' go:  Raymond Vahan Damadian. But I'm not cheering him without some Ativan in my system already. Sorry, Ray. I'm sure you were a super smartypants, too, but some people get the fuzzy end of the lollipop.

It will be my first post-initial treatment MRI. The results will then be forwarded to my "local team": radiologist and oncologist, as well as my UCSF team. I have an appointment on Monday, 1/12/14, with my oncologist to discuss the results. <gulp!> I know...We know that the first post-treatment MRI is a weird one. It will be only 4-5 weeks since my last radiation/chemo treatment, and I'm still tapering off my steroids. They expect things to look ...well, not normal.  Actually, come to think of it, my scans will never look "normal" again since I had a very "AbbyNormal" tumor up in there and with what they had to remove and zap and such, right?

But this MRI will (hopefully!) "just" be a new baseline, showing the effectiveness of my treatment as well as a new comparison point for all future scans.

But anyone who has/had cancer knows that feeling of SCANXIETY.  

[Confession: I'm suppressing the urge to break out into a song in Mel Brook's accent at this moment? I know I'm not alone. Why fight it?]

SCANXIETY is that feeling that overtakes us - I was going to say Cancer Warriors - but really anyone who has a chronic condition and needs to be monitored through scans to ensure there are no negative changes over time. It could be a recurrence, worsening of condition, or an entirely new bag of crap to deal with.  You know: everything we try not to think about in our every day lives, or it would make us crazy!

I'm trying to live my life these days - 90% of the time - focused on the HERE and NOW. Appreciating the present and letting go of those things that I can't control. But these MRI's - which will continue on pretty much forever in my future - bring up the WHAT IF's bubbling to the surface like a barrel full of corks floating in water. Try to push some down, and more just pop up somewhere else.

So....what am I going to do? I've already been online this morning, looking at cute pictures of animals - micro-pigs and hedgehogs, doggies, kitties, and of course....SQUIRRELS! (Hey, don't knock my hobbies! Haven't I already told you that the world needs less cynicism and more whimsy!)

Internet Lesson of the Day - Feel free to skip if you'd rather carry on with more serious talk.
Kiddies, I always try to teach you something useful, so here it is for today:  If you are willing to up your game from Pinterest, the real mother-lode of ridiculously cute animals is far and away reddit.com. They have whole subreddits devoted just to "Dogs Wearing Hats" and "Animals Being Derps".  But if you're a newbie... Quick Test: Do you know what a subreddit is? No?----> I suggest you start with the wildly popular and aptly named "Awww". And you can pin these on Pinterest and feel smug virtuous about contributing some semi-new content! Win-win!

This one is called: Kitten and Bunny Lookalikes.

Question from the audience: But June, how long will looking at adorable animals pictures really distract you?
Answer: Longer than you'd think...under normal circumstances. But with the scan a day away....not long enough, unfortunately.

It's not all about the scan, though. It's about the fact that we have to face the results of the scan and respond to them. We don't know yet what we're going to learn, but we are going to learn something. And we will have to make decisions based on that information. Which requires us to start actually looking at the WHAT IF's/THEN...scenarios, choices, options. So, Steven and I take deep breaths and start wading into the world of WHAT IF's with GBM patients.

So, how do we navigate this new, uncertain, scary time? How exactly am I supposed to CHILL OUT?!

Uh, oh! We've unlocked June's teacher-mode! Look out!

Let's reframe this situation, shall we? I may have many more MRI's in my future....which means a lot of more of these "Scanniversaries" and SCANXIETY ... as long as I have a FUTURE....

And that's very good news, indeed. Yes, it is!

 So, I need to associate Scanniversaries with LIFE instead of ANXIETY.

Got it? Got it.  

I'll keep working on it. Practice, practice, practice.

My new mantra:
Continuing MRI's = Continuing FUTURE

And I say that deserves a cheers to both Stanley C. Bell and Raymond Vahan Damadian!

Now, if we can just find the next Smartypants Scientist(s) to find a CURE for Cancer, 

I swear I'd throw the biggest party EVAH! 

With unlimited cheers! and drinks on the house! (Shhhhh! Don't tell Steven.)

You heard it here first!

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And now a BONUS TRACK!

Introducing: JUNE'S WARRIORS - SUPPORT page!

 

We are so grateful for the all the expressions of support, love, and encouragement that we've received from friends, family, and complete strangers around the world. We are humbled and overwhelmed by the response to our current challenge. From the messages and the cards, the meals dropped off, contributions of organic veggies, cozy blankets and toasty & cute hats...the list goes on and on...
all of it has meant so much to our family.

In addition, some of our communities have spontaneously organized fundraising opportunities for our family. We thank you so much for your big, big hearts and effort, and thank you to everyone who participates/donates!

One of the things about my condition is that it is chronic (I prefer chronic to terminal, don't you? Although John Cleese said, "Life is a terminal disease, and it's sexually transmitted.") ... and unpredictable. We are fortunate enough to have insurance, however, we just got news yesterday that my MRI will be the first thing applied to our annual deductible in January.  Wheeeee! Ka-ching! My monthly medication co-pays also add up. And the reality is that, "standard treatment" for GBM is very limited at this time. Down the road, we also may be looking at significant out-of-pocket expenses associated with clinical trials and seeking alternative/supplemental care. In other words, we most certainly need and appreciate all the support.

I've created a new page on this blog: JUNE'S WARRIORS - SUPPORT to acknowledge and keep you updated on all of June's Warriors efforts. It will include not just opportunities to support our family, but links to support the often overlooked cause of Brain Cancer.

If you are already planning to come to our event next Wednesday, January 14th @ the Vine- our family is very excited to see you all in person! If not, click on the June's Warriors page and find out more. It's going to be bitchin'!

NO ONE FIGHTS ALONE!

The One in Which I Describe the Family Holiday with "New Normal June"

Warning: I'm gonna write a lot and then reward you with some of the most adorable pictures you've ever seen. Trust me. It'll be worth it. Carry on! 
I've taken a full-week off from writing this blog - a deliberate decision to be "in the present" as much as possible and soak up the experience of being able to be with my whole family together at one of the my favorite place on earth...

Yes, well, obviously "The Beach".... (You don't get any points for knowing that. Sorry, Hermoine!)

But more specifically, Capitola, CA. This is the way you usually see it in brochures and stuff, but it's so much more than this.

The distinctive colorful view of Capitola Village

It's one of those places that you don't really even want to tell people about because then it will be even more crowded when you go.

Capitola is a mere 35 - 40 minute drive from our house in San Jose. I think it's a natural phenomenon that folks don't manage to go to their favorite local places nearly enough. But after my diagnosis and treatment in the last 3 months, my family rallied together and said, "What should we do for Christmas because we want to to do it together."

The planning involved not just my husband and my 4 children plus Son-in-Love, but my sister, Kathleen, (and her daughter's family), brother, John, (with his sig. other, Condee), and my father and mother.
Shout out: Mom & Dad were instrumental financially in making this grand gathering become a reality, and we are so very grateful! Airline tickets had to purchased and two full units had to be rented - one had to accommodate dogs! - and at peak, we were expecting 14 adults and 2 small children. And a partridge in a pear treeeeeeeee.....

The "Normal June" (which I shall begin to call the "Old Normal June") would have relished this task - full of moving parts, plans, and lists... Who will stay where? What extra supplies/beds will we need? Menus, grocery lists...it's a Type A's version of heaven, I guess.

But based on the physical impact of the last few weeks of my initial radiation/chemo treatment, it became clear that someone OTHER than me was going to have to handle the rental properties. I was not up to the challenge, and I had the good sense to say, "Please take charge of this!" - and so, Steven & John made that part happen in a flurry of internet and phone negotiations with the long-distance help of Mom & Dad, of course. Done.

As I recovered from my fatigue, I swung into Old Normal June-mode and started sending out emails with logistics, loose schedules, and menus. Google Docs were made and Evernote notes were tagged...and I thought I "was back" - I had this handled - with the help of Daughter April, who did a great job of updating things as plans solidified.

But the reality is, once we got there - things kept changing...with so many variables and people, my plans often were way off target. The good news - and it was really, really good news! - was that both Katherine and Sara were able to stay the whole time - which was not the plan in the beginning. The bad news is that every change meant I needed to adjust The Plan. And I got completely stressed out.

At the heart of it? Lack of control? Fear of disappointing the family because I couldn't handle it? Projecting in the future...fear that my New Normal June might not be up to the task anymore? Who is this New Normal June, and who invited her? Will she be sticking around, or is this a temporary thing???

Those of you that have been following my blog are probably staring at the screen right now slack-jawed - or yelling at me through it: "Have you learned nothing this past three months?" "What about all this poppycock about letting stuff go and knowing what really matters?

 I know. I know. I'm still a Ninja Warrior-in-Training, I guess. Or it's one of the things you never really master? I have no idea. All I know was...

About the fifth day, I had a little meltdown. Eyes turned toward me, asking what the plan was...when were we leaving for the next event. And I just broke down. And released the responsibility. I took control by saying, "I don't want to be in control. I CAN'T be in control." And it was really hard, and I cried, and then...you know what? The world didn't stop spinning. The family rallied, and everyone picked up the ball and ran with it.

Kiddies, I'm happy to say that this Ninja-in-Training was able to right her thinking and focus again on what really matters... And I don't need to tell you that when you do that...

The Magic Happens.

Like this:

FAMILY...2nd, 3rd and 4th Generation 

And family...2nd Generation Fremer Siblings

and family...1st and 2nd Generation Fremer Family

and Family...2nd and 3rd Generations - The Mirassou/Coffey Family (plus "the Bean")

The planned and posed moments were spectacular, 

but so were the unanticipated and unexpected gatherings. 

Maybe more so?

Daily walks along the water with Steven and the doggies - FYI: Capi (left) is named after Capitola

Tiger hat and beanie to keep our baldy heads warm in the morning chill

Goofy Brothers-in-law bonding

And...

Mom & Son swaying to '80's Pop music

Extra time with Sara thanks to coworkers covering holiday shifts...

Smiles and laughter and extra days with Katherine with April practicing her mommy skills!

Morning gatherings on the patio after our walks

Alone time with Seestor - who travelled for 2 days for basically a two day visit! 

Condee and one of the happiest boys you'll ever meet.

Matt & Dad - Multi-generational meetings and conversations

Siblings

and of course, Schmoopy Love!

Getting together the Family is work and complicated  - and yes, unpredictable, 

but there is no doubt that... it is worth it. 

Because it is MAGICAL. 

And just a thought from your in-house MFBCFNW-in-training: 

maybe the fact that it's not easy is part of what makes it magical?

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.