The One in Which I Took Forever to Finish

It's been a little while since I've posted on my blog. I've had this one halfway done and redone several times, but it seems muddled, and I've almost abandoned it a few times...but I'm going to stick through it today and say what I want to say. I apologize if it's jumbled. Have you forgotten that I have a #freepass?

Kiddies, I can not to tell a lie. I came up with the name for this blog long before "It" happened [e.g. B.C. or Before Cancer] ...and I recognized as I started to read other cancer survivors, that lots of blogs have the words "life", "living" and "full"...I'm not going to change anything, but I wanted you to know that I am aware that it's not original. and I wanted you to know that it had different meaning at the time I conceived of it - that sounds a little ironic to me now. It also explains a lot about my journey over the last six months and what's on my mind these days.

So, here's the irony of it all: About a year ago, I thought of starting a blog called"Living Life in Full" and the concept behind the blog was me figuring out to find balance with each all the roles in my life: Wife, Mother, Sister, Daughter, Homemaker, Full-Time Teacher/Intervention Specialist, Part-Time Tasting Room Staff, Wife of Winery Maker/Owner A lot of what I anticipated writing about was how do you live with joy with the stress and distractions(we all have)? How do we maintain "health and fitness" while being a self-proclaimed "foodie" and winery owner? I had struggled with my weight my whole life, but in this latest go-'round,  I had devoted close to 2 years to counting points and running while I attended winery events where they served foie gras (until they made it illegal! <gasp!>) and a ton of cheese, drinking fancy cocktails, and wine (DUH!). And it "worked" - I'd lost over 50 pounds and run two 1/2 marathons...Then I started a new, challenging job which involved much less activity, and the pounds started to pile on again... I thought keeping a blog might help keep me on track and motivated. I followed twitter folks and read fellow bloggers who also struggled with finding balance between all their roles in life; wife, mother, homemaker, employee, etc...I collected those motivational posters. You know the ones...

(Kiddos, PLEASE NOTE: I'm not trying to bash on people who are very focused on losing weight and/gaining fitness. Hopefully, over time, you may rethink what "healthy" and "fit" mean and what you are doing to achieve those goals. but that's a story for another day..)

On September 23, 2014, my perspective changed dramatically. That's the day when they discovered that I had a glioblastoma multiforme tumor, and I had a craniomotomy to remove it.  "Health and fitness" no longer equated for me a certain BMI or how many miles my Fitbit recorded per week. In fact, I found it amusing that my doctors kept saying, You're so healthy!" Um....except that brain cancer thing we're dealing with, right? Message received loud and clear: Health is relative and a matter of perspective.

What I have had a hard time since my Dx is that I've been really thinking hard about who I'm striving to be as a person. I'm not trying to bum you out or be negative, but we all go around thinking that we have a LOT of time to figure that out. But what if we don't? What if we have a year?...or months? or even weeks? What if what you did TODAY really mattered? ...because I have some news for you:
It does.

I could have a fair bit of time for that...or I could very little time...And ultimately, it was/is about being the best ME I could be. So, I started to shift my thinking. The number one priority to me right now is survival - LIVING WITH CANCER - but truly LIVING...with JOY.

I've mentioned before about the Stephen Covey approach to life/planning. He identifies "roles" in your life (e.g. wife, mother, teacher, etc.) and has you think about daily tasks that will help you achieve SMART goals in each role. I love the idea of living purposefully, but what I would find myself doing is focusing on one role or another and it felt more like a roller coaster. I hate roller coasters. Why we deliberately add fear and anxiety into life when there is so much there already?

So, I've gradually come around to another way of "living purposefully". Again, I'm not some genius making up my own approach. Like a lot of people with chronic/terminal/serious illnesses, I split up my approach by focusing on various areas of my life: MIND, BODY, and SPIRIT. I call it "the trifecta". I figure if I can find balance in these areas and really concentrate on each of these areas 1) it will help my healing and 2) it will automatically involves the SMART goals I already was thinking about, but in a more profound and meaningful way. In other words, it gets at the WHY of the goals.

So, I've replaced my Covey/DayRunner type planner and made up my own. I get up and think about what I can do to strengthen my Trifecta - I think of it like a stool that needs all three legs to function optimally. Then I fill in my "To Do"s in my roles - and it just naturally fills in because when you are in balance, the most important things naturally get your attention - if that makes sense?

Very messy, homemade journal - notice I have an additional role here: "Survivor"

I'm not criticizing people to having a different approach. But I'm done with the pinterest boards and bloggers who encourage the focus on your BMI or size of your pants or how many miles you ran today. I've unfollowed all those "fitspo" folks and started following fellow survivors. Sorry. My life is too short. and what really matters to me is that I'm HEALTHY. Maybe your 30 minute workout might be just the thing, but IF it's on my To Do list, it's about real balance: Mind, Body, Spirit = A JOYFUL LIFE. For however long I have it. And I think that balance/joy positively affects all those roles I've been trying to attend to for so long.


I guess my purpose for starting this blog hasn't really changed that much. It's more that my approach to living a joyful life has changed. And for sure, my definition of "healthy and fit" has changed.

So, there it is.  Muddled and jumbled and not perfect for sure. But finished. I can check that off my list under "MIND" and move on.

______________________________________________________________________________

P.S. I can't tell a lie. There are other important reasons that I haven't finished this blog yet:
1) I have a beautiful baby granddaughter:

Autumn Elizabeth & Grandpa Steven

2) I am preparing to leave for Paris for a river cruise tomorrow.

Starting in Paris, we are going down (up?) the Seine and going to Normandy, then returning Paris where Steven will spend about three days exploring on our own! So excited! But need to pack!)

I know. It's difficult to feel sorry for me. Did I mention that I have brain cancer?
Just kidding! I'm not looking for pity. And today I have I feel very, very blessed!

The One in Which I Feel Blessed to Meet my Granddaughter

5-1/2 months ago, I was diagnosed with gioblastoma multiforme. I couldn't even pronounce it or spell it, let alone tell you what it was! The hardest part in the first few days was having to tell our children about the dx. I don't remember much of the dark, early days - but I do remember sitting on the sofa, along side of my oldest, April, and failing miserably at "holding it together". After Steven explained the situation and what it meant, I leaned into her shoulder and choked out, "I'm gonna fight this. I'm gonna fight this so hard, so I can see your baby..." And she whispered, "Of course...I know..." Thank you for believing in me, April.

At the time, it seemed so far away...and I know for some people diagnosed with GBM, 5 months is a pipe dream. And yes, Autumn was my dreams that helped get me through the difficult times. I thought about Autumn Elizabeth to get me through my "custom fitting" of my radiation mask. I visualized her during my radiation sessions. I thought about Autumn Elizabeth during my MRI's...

And here she is - I made it to April's baby shower, and I'm still here for her birth! What a blessing!

Autumn Elizabeth, Day 3, Thinking some serious thoughts....

I put a cork board on my wall back in September. I pinned up Autumn's ultrasound picture, a brochure of our winemaker's cruise down the Seine (in April), and a picture of the UCSB graduation (Katherine graduates in June). At the time, those were the the events that I thought it reasonable to assume that I might still be here.  I also put a picture of the family at April & Coffey's wedding, representing all the "unofficial" opportunities I have to see the family.

I still get all squirrely and anxious when Steven gets too far ahead in the future. Maybe it's superstitious. Living with Cancer is a bizarre thing  -- for me, anyway. I want to remain hopeful, and yet I don't want to be too greedy. One day at a time, one week at a time, one month at a time...

Yes, I am a warrior, but I'm not fighting AGAINST something. I'm fighting FOR things. I'm a Mother Fuckin' Brain Cancer Fighting Ninja Warrior because I'm fighting for moments like holding my sweet granddaughter.

Cruising down the Seine with my Schmoopy  

http://winecruisegroup.com/wp-content/uploads/2014/07/Steven-Kent-Wine-Cruise-April-2.pdf

Katherine's graduation...

I'm going to keep fighting for these things as long as I can. 

And I hear a collective whisper,

"Of course...I know..."

Thank you for believing in me.

The One in Which I Wonder What It Takes to Make Big Changes

This morning, I am up early and headed over to the hospital for my bi-monthly MRI. I can't believe it's been two months already since my last one. And I certainly can't think of anything in my "pre-cancer" life that even comes close to analogous to the feeling I have awaiting these scans.

This will be 2nd MRI, post-initial treatment (radiation & chemo) and ...Western/Traditional Medicine is limited in what it can and cannot do with respect to brain cancer right now. February 28th was Rare Disease Day, and brain cancer falls under that category. Take a look at this graphic for some statistics. There are 120 different types of brain tumors! And only 4 treatments approved by the FDA right now!

In a way, that made it "easy"  - we were told what the course of treatment would be and set up a schedule...and I showed up and did what was required. It was all about the body - more specifically, the brain and the site of the tumor.  Basically, from the doctors' perspective, I've two courses of chemo since the last MRI - 5 days on/23 days off. That's what the doctors had/have control over.

It's natural that Steven and I asked ourselves, "What do we have control over?"  - Right?
We began to look more and more about what Long Term Survivors were/are doing and research that, too. Now, that the initial treatment is over, it's gotten even more complicated. I feel a huge responsibility to "do the right thing"...when The Right Thing isn't at all clear!  So, Steven and I are working as hard as we can to learn all that we can about what is "out there". This includes the limited modern medicine approaches, as well as cutting edge clinical trials - which is changing all the time. But it's also lead us down this road called "Integrative Health" - a mishmash of Eastern medicine, nutritional knowledge and supplements, meditation, yoga, ... - things that address not just the body, but what I call the "trifecta" - Body, Mind, and Spirit.

Sometimes, you will see "Heart" separated, but I combine Spirit & Heart together.

This is definitely new territory for me! Especially as a Type A/Pragmatist like myself. I want evidence....scientific evidence that these things work. But there is so little "official" work being done in this area that the proof is largely anectdotal. So, we've begun to approach this in a different way:
1) Will doing _______ interfere with the other things that we are already doing (Doctors' Orders)?
2) Will doing _______ decrease our quality of life?
3) Can we afford it?
4) Does it make sense?

If the answer is NO to these questions, it's off the table. Otherwise...we've adopted a "Why not?" philosophy. This Type A/Pragmatist is just taking leaps of faith all over the place. Hey, when YOU have a disease that's nickname is "The Terminator", you can argue with me and tell me what a fool I am. In the meantime, as Gracie would say,  "Worry 'bout Yourself!"

So, I've been thinking a lot lately about the changes - large and small - that we've made in our lives as a result of these decisions. And wondering how far anyone would have to be "pushed" to make these same changes. And I really don't mean this to sound judgy or dickish.  - I'm asking myself legitimately, what would/does it take for an individual to give up foods that they really love? Or eat/drink things that they don't prefer at all? Would it have to be a medical diagnosis that would be cured by the change? Or a *chance* that you might add a week or a month or year to your life? If you were told you could never have refined sugar again, but it MIGHT mean you could live an extra month, would you do it?

I know these are wild, hypothetical questions that are probably impossible for any of you answer.  And I'm not judging or bitter. I'm more curious than anything. We all know that a diet consisting of mostly fruits and veggies, lean proteins, and whole grains is healthier. That's not from the Crazy Town Gazette. But what does it take to commit to that? I know my answer - it's staring me right in the face.

But for many of you, it's not. I'm curious. What does it take to make big life changes? If you have an answer, leave a comment here, shoot me an email or a text...

or you can just tell me to "Worry 'bout myself!"

That's fine, too. Off to my MRI!