The One in Which I Explain My Paradigm Shift

The last two blog posts have given you an idea about the shocking and shitty news I've learned within the past week or so. I have had some reservations about writing about what I'm going through. In my head, I'm saying, "Am I betraying my readers that look to me for inspiration?", Then I decided remembered this blog has always been 100% No- Bullshit and completely Authentically June's Voice and Thoughts Territory.

*Money back guarantee  - Nevermind that this blog is totally FREE!

So...

In case it wasn't clear to some of readers, I have always believed that I was going to die from GBM. It's always been a matter of when. I'm not going to dig through my previous posts to find proof that I've said that before. This disease is called The Terminator for a reason. I had some things in my favor to make my survival rate better than some Warriors, and it is true - I've survived over 16 months, better than the median survival rate for GBM patients. Yay, Me! This 16 months  has been filled with ....well, LIFE! Ain't it grand? But I just seemed like flyingggggg!

Unfortunately, this latest MRI results has turned everything on its head. As an inoperable tumor that can not be treated with radiation at this time--->Note: surgery & Temodar with radiation - three very helpful "weapons" in a battle against GBM. My standard options are  now: two kinds of chemo that have been deemed less effective than the Temodar, the one I've been on the last year or so) or three potential clinical trials. For the uninitiated (and kiddies, I hope you are one of them, because that means you or someone you love have never been ill with a disease for which research scientists are seeking a cure) Clinical trials are the protocol that drugs/treatments have to go through before they can be approved as safe and effective by the FDA. These trials go through phases 1,2, etc. to find the right dosages, etc 

The latest direction cancer cure research is headed is called drug "cocktails" - a combination of drugs like they used (eventually) to find a way for people to live with AIDS. There is a very interesting movie online about this "new-ish" direction for cancer fighting that's free to watch online Surviving Terminal Cancer. <----- Just learning more about Ben Williams, kind of rockstar in the cancer fighting community is worth just the click. Promise!

The book is good, too, but the video is fascinating.

So, after many agonizing hours of crying and talking with Steven, we have decided to participate in a clinical trial for brain cancer. What I want you to know about this:

1) Of course, we would love to have the best possible outcome from this treatment  - complete remission with a minimum of effect on my quality of life.

2) If I don't experience a remission of the disease, we hope for at least an extension of my life span. And the reality is, given my current situation, we are probably talking months - not days or years right now. Sorry to be the bearer of that shitty news. Of course, the doctors can never KNOW know, but this ain't their first rodeo, either. I believe that some people can beat the odds, and I know I'm not a statistic. But I also think it's important to be prepared for the possibility...and

3) Worst case scenario, at least I've helped with the progress to help future GBM and other cancer warriors.

 And that brings us to the paradigm shift to which I referred. After my first round of treatment- my first "battle", I think of it - I thought I had a chance to catch my breath, take a victory lap. It was not to be. The last week I've been so fragile, "I thought that I had so much more time.....so much more time...." <I've whispered that under my breath so many times in the last week.>

Given the change of circumstances, my focus has shifted.  I have not changed one iota in my feelings about appreciating life and finding joy in it - to FIGHT for all the moments that matter and realize that we need to treasure them. The Ninja is still there, no doubt!

The difference, I guess, is recognizing that we have to think about what moments are really important to us, and try to make sure they happen. If you thought that you had an indeterminate time, or for sure decades ahead of you, you might just trust them to chance. I can't afford to trust chance. Not just appreciating our lives, but recognizing that we're MAKING our lives every day in some ways.

You might imagine that this is an intense and emotional phase for me. If you do, you are right. And I'm sure you have rather figured out already from me that these "moments" I'm thinking about making are not a list of places to visit and experiences to have like bungee jumping in Vegas... 

It's.....everyone? everyone?

Friends & Family 

<gold star for anyone that said that right along with me!>

OR...

The One in Which I Talk About the "Wait and Live" Phase

In case you don't follow me on Facebook, I'll start this post by giving you an update. I just took my last chemo pills last night after 12 cycles. Those were preceded by what I call the "30-day Initial Treatment": chemo 7 days a week and radiation 5 days a week. The 12 monthly cycles were 23 days "off" and 5 days "on" (chemo). It's been a long road. I lost most of my hair and 70 pounds. (See, being fat before this all started actually was a benefit. Who'd a thunk?)  I had 70 pounds to lose and ended up scraping the bottom of the "healthy" scale for my BMI considering my height. I have worked hard lately to stabilize my weight so I don't go into the "danger zone" of underweight. My body needs those calories. I just try to make sure they're nutritious calories and not crap. <--which I should have done all along, but that's a horse of different color -- kind of like my hair!

2013 Alaskan Cruise (left) - 2015 Thanksgiving (right)

I'm sure I have lost a lot of muscle mass, too, not just fat. But I've tried my hardest to exercise every day - walking and more recently incorporating yoga, too. (Dang! Yoga can be a serious muscle workout, but it feels so good!) We have an erg or rowing machine in the house now, and I plan to get some workouts on that when El Nino really gets going here.

From the beginning, every doctor we saw said that this was the best thing that I could do to help myself. EXERCISE/ACTIVITY/MOVEMENT. Of course, I try to listen to my body every day and be sensible. Sometimes the body just needs rest to help it heal. (Naps are good, too! No, really, really good. Trust me on this one, Kiddies!)

Another thing I have been doing is focusing on the positive. Lifting up my arms in acceptance - -  and being so grateful for people who have supported me with love and positive energy and prayers. I believe that helps me continue to have the stamina to push through every day and live life. I can't say THANK YOU enough. Meditation also helps me focus on the positive, healing energy and keeps my mental state on the positive side.

In the first month or two, I sought advice and fellowship online from people that were in the same situation as me. I read blogs from other Warriors with GBM, and actually bought a t-shirt from one that spoke to me at the time. I've worn it several times and featured it here on this blog, too, I think. It says, "Fear is fake. Live Now."

Source: http://www.ryansepicbattle.com/shop/

When I wore it, many people commented on it, positively. But now, 1)It's way too big for me, and 2) Steven and I discussed this recently, and I no longer agree exactly with this message. Fear is really not fake. Fear is a natural and reasonable response to my situation. I am human. I feel fear at times. We all do. Human beings are programmed to feel fear to avoid dangerous situations - you know, the whole "fight or flight" thing? Since I can not flee from my brain cancer, I have to fight it. Like a Ninja Warrior. What I think the real message is that we should try not to focus on our fear.

At my last meeting with my oncologist before I started this last chemo cycle, there was definitely a different "vibe" in the room. I had made it a year. More than a year. That's definitely something to acknowledge and celebrate. I'm entering "Outlier" territory, my peeps! Woot! 

My Outlier cookie, provided by Charrisse Min Johnston. If you want to see the whole awesome collection: click HERE

But I also shared with him, as I'll admit to you now, that I have begun to have a lot anxiety at times. Being in the "Wait and Watch" phase instead of being in an active treatment regimen. Well, let's put it this way, the doctors have stepped back, and I'm free to "do me". Which I will: continue with meditation, exercise, nutrition, rest... and LIVE. Not just wait and watch, but Wait and LIVE.

My doctor said something that really stunned me and caused a paradigm shift of sorts for me. Anyone that knows me well, knows that I often say, "What do you want the outcome to be?" when they ask for advice about what to do/say in a situation. And I make decisions in my own life with that in mind. So, I tossed off one of my mantras, "Worrying won't change the outcome." And the oncologist looked  me square in the eyes and said, "Or...worrying could change the outcome..." <deep pause> In other words, in this particular case, worrying is actually counter-productive when you're in a situation where you hoping for a positive outcome of a healthy body. Worrying, stress, negativity are all actually, scientifically proven to be toxic to our bodies. Google that Shit. It's the truth! (Kiddies who are struggling with depression, anxiety, stress...go back and read that last bit. And think about how you're living your life right now. What are some things that you could do to change it?)

Most of you have figured this out by reading my blog already. It's about how you live your life NOW, so I like that part of that old t-shirt message.  So, in fact, I've made a new t-shirt for myself that I can't wait until it arrives in a couple weeks! It says, 

"Find the Fun! Live Life Now!" 

I think that encapsulates more of what I believe and.... the message I wish everyone could feel deep down inside (without having a life-threatening illness). I think needing to have brain cancer to get there seems a little over-the-top, don't you?

Stay tuned for a picture coming soon of me in my new t-shirt! 

but there's always room for a gratuitous picture of my granddaughter, Autumn, right?

Just turned 10 months old yesterday (double digits!), and she's already a foodie!

Love, June Xoxoxo #mfbcfninjawarrior

The One in Which I Talk About Christmas 2015 - One Year Since I Started Treatment!

December 12,2014, I began my treatment for my brain cancer: 5 days a week of radiation and 7 days a week of chemo.  Although I am sometimes mistaken about little details , I'm pretty sure I'm right about this one. I think at that time, my family was hoping for the best, but aware that I was facing bad odds. In fact, the unspoken vibe I felt was that we may not have June around next Christmas. My parents generously asked, Where do you want to spend the holidays?" I responded, "Capitola" (my favorite place in the whole world) And they made it happen. All my children (plus some "significant others"), my parents, my sister, brother, and his significant other, and briefly my niece and her family...and of course, our two doggies! spent Christmas week walking in the albeit chilly, but sunny and quaint village of Capitola. My goodness, Capi is named for Capitola! And we had such a lovely time, we swore we'd do it again in 2015. Click on this link if you want read about last year's experience.

Capitola-by-the-Sea

Sure enough, my parents helped make this happen. But everything was different this year. (Funny how that happens. Life changing things and stuff.) My children are growing to "real adults" with jobs and responsibilities, and some weren't able to take a whole week off from work. My sister also wasn't able to make it. And, of course, we had the addition of our first grand baby...a joy for us and a huge change for my daughter and son-in-love. Their adorable, smart, and brave daughter (I insist that girl babies hear descriptors that go beyond their beauty.), Autumn, requires a great deal of attention and has become the center of her mom and dad's universe. Absolutely rightly so. In fact, we only had one afternoon when our whole family was there together. So precious!

El Niño made a huge impression on our holiday week,too, bringing lots of rain, rain, rain. That didn't really bother me. I always say, "a bad day at the beach is always better than a good day anywhere else". The doggies weren't so keen on going for walks, though. And Steven refuses to get rain jackets for them since it would rob them of their dignity. But Steven managed to coax them along at least once a day, along the river.

Another highlight of the trip was having lunch on the patio of Zelda's with almost all the family. I think the hostess thought we had lost our mind when we asked to sit outside. Hey, it wasn't raining! It was pretty cold, but they wiped off the chairs and let our crazy crew eat lunch with a gorgeous view.

What I'm trying to convey is...life goes on (yay!) and it changes (also a "yay!" because wouldn't it be boring if always stayed the same?) But the changing thing is something that requires some processing and adjustment. One of the new traditions we had planned was to wait until we arrived at our vacation rental, get a big tree, and decorate it there. We've never done that before, but I had always heard that some families have the tradition of doing this on Christmas Eve, so I wasn't concerned. Steven and I set off on December 23rd to get the tree. All the decorations had been brought down from San Jose...only we went to every possible source in the area, and they had no trees. I guess people don't do that Christmas tree tradition anymore? I sat in the passenger seat as we drove from place to place, only to be disappointed with a shake of a head and suggestions of where to try next. I was trying to hold back tears and talk myself out of my disappointment. After all, it wasn't like one of had brain cancer! (Oh,wait....)

We ended up at Orchard Supply - where all the trees were gone,too. But they had some sad Charlie Brown potted plants. And my hidden and sulking attitude adjustment got kicked to the curb. If we can't have a beautiful 6-8 foot towering, impressive tree, we could certainly strive to have the ugliest tree! So, Steven and I picked out a plant that we decided was the fern version of Cousin It from the Adams Family.

I introduce you to the Cousin It of Christmas "trees".

We bought a hedgehog made out of a pine cone for the top (with a blue LED star to enhance it. DUH!) . And a plant stand to give some dignified height - and less likelihood that our doggies and granddaughter would run into it. In about 15 minutes, I went from sad and disappointed to gleeful and belly laughing while we ran around the store, trying to find all the ugliest things possible. [Kiddies, the lesson here is: You know what? Shit happens. Deal with it. Quit yer whining and find the fun.] 

We proudly returned to the house and presented it to the kids, who were great sports about joining in to our frivolity. One of my most wonderful Christmas memories this year was having Autumn "help" put up the lights.

 (Not only is she beautiful, smart, and brave, but she's helpful, too!)

And my kids and I put as many of our ornaments as we could on this little sucker. Katherine encouraged everyone by saying, "It's easy! I'm not even hanging them! I'm just shoving them in there!" It was ugly, but in an ugly-cute kind of way.

Sort of like pugs <ducking and running from all my friends who have pugs> Hey, I've been known to describe our Tess the same way. Our Baja mutt is pretty ugly-cute. No shame in that game!

Here's a "cutie", Tess, named for Tesla Road, where our winery is located.

Later in the week, the sun really came out. And there were lovely views to be seen. I was lying on the sofa, spooning with Schmoopy and watching a movie, and I turned around and looked out the window at the bright light shining in the sky. I debated for a few minutes about interrupting that time and suggesting we go out and go to the beach to enjoy the vistas. But I felt his legs pressed against the back of my legs, his arm wrapped around me, the warmth from the fireplace, and the ugly Cousin It Christmas tree adding to beauty of the moment. And I decided: Nope. This is just perfect. 

I hope you had as perfect a holiday season as we did. And Happy New Year! One more chemo cycle this month, and then we start the "watch-and-wait" phase. Not easy for Type A personality, but my plan is to not just wait, but live life and look for the fun. That sounds like a plan to me!