This morning, I googled “Oprah’s Favorite Things 2015”, and the first hit was for a link to amazon.com.  I thought, that says a lot, huh? I’m not going to say anything more about that. (Kiddies:You draw your own conclusions and don’t send messages calling me a hater. Or do, if you feel compelled, but know that I'll just delete it, erasing negativity to my life)  I’ve just been thinking lately about how my list might look and how it would compare to a typical Oprah list. -

So, here it is: June’s Favorite Things – 2016. Unfortunately (for you, I guess?), I will not be hiring staff dressed like Elves or something to run around to your chairs and give you a duplicate like Oprah does. So, it’s okay if you don’t go bizerk after reading and start jumping around like a 14 year-old girl at a Justin Bieber concert.  But I thought it would be an interesting exercise for me and maybe inspire some of you to make your own lists.

June’s Favorite Things – 2016 Edition

• v  Getting to see my grandbaby, Autumn frequently because of all this amazing different technology - smart phones with FREE apps like Snapchat and Instagram. It is like Christmas morning when I get to wake up to see her beautiful face and stunning blue, blue eyes, doing something adorable and growing up “right before my eyes”.

She's not even a "baby" anymore, huh? Grandtoddler Autumn? Any mom will say, though, that they're always OUR babies! Right? Sorry, kids. It's true.

• v  The feel of Steven’s hand grasping mine as we take walks our two rescue dogs around the vineyard. This comes in several flavors, too:

Ø  Gloved hands or bare hands, winter coat or sweatshirt…with or without a scarf

Not that much color-coordinated, but I seriously doubt that the "What Not to Wear" cast is lurking around there...

• Ø  Hats! hats! hats! That have all been given to me by friends near and far. Some of them are handmade by them, and I imagine as I cover my blue haired-head, and think how lucky that I have so many people in my life that are so thoughtful and loving. And it’s amazing how just putting a hat on can make you feel so much warmer!
• Ø  And tangentially related: my short blue hair. I don’t know why. I can’t explain it. I just love having blue hair.

• Ø  Muck boots, hiking boots, or running shoes -  Depending on how long ago it rained.
• Ø  Watching the morning light rise above the hills behind us or moving quickly and watching the horizon to the west to try to race the sunset (to be watched in our backyard).
• Ø  Vines filled with grape clusters, barren vines, stunted vines after the pruning, and the latest look – buds beginning to sprout. REALLY Watching the cycle of something grow is magical.
• v  ½ hour per day devoted to meditating and virtually being transported to my most safe and lovely place, feeling so safe and strong, and refreshed when I’m done. Which bring me to...
• v  Naps. Some days are naps because I feel so yucky from my treatment, and I just want to shut it all out. That’s actually a good thing. But It’s even better when I just need a little rest, and I doze off during reading or a little watching of something on Netflix.
• v  Listening to the cacophony of birds in huge, tall trees around our house about sunset, and suddenly seeing a flock of them seemingly bolt out of the tree to find their next group perching spot.
• v  Surprising a jackrabbit on one of our walks, seemingly hopping fast as the speed of light, especially when Capi and/or Tess see it and start chasing it…as if they could ever catch it!  (Excuse me, I’m gonna Google how fast a dog can run and a jackrabbit hop. I’m guessing that there is a great difference, based my observation.) Okay, let’s start with making clear that our doggies are not greyhounds. One is a pretty lazy rescue mutt from Baja (which means that it’s a mix of pretty much everything) and the other is also a rescue dog. Her mom was rescued while pregnant, so we know Capi is ½ long-haired dachshund, but her dad must be some kind of terrier because she doesn’t have the squatty, short legs. And she loves to herd! Honestly, she’s clearly faster than Tess, but Sssssh! We don’t want to discourage poor Tesla! Anyway, answers.com says “Average speed for most dogs is probably around 25 miles per hour”. ….It says Jack rabbits run 40 mph. Now, I know this isn’t very scientifical* but I do know that’s pretty funny two watch my two dogs try to keep up, and it’s clear they’ll never reach it. Ahhhhh, optimism! Gotta love it!
• v  Watching movies. Usually, I prefer documentaries. I guess it’s the History Geek gene in me. I'm browsing through Netflix and found a series, American Genius from the National Geographic Channel. (Don't get me even started on the so-called "History Channel". I highly recommend this series, though! The first episode is about Jobs and Gates. Even if you've seen all the Steve Jobs films already (guilty as charged!), I think you'll still get something out of that episode, and more from some of the others. Speaking of that....
• v  Friends that don’t judge me for laughing at or enjoying ""inappropriate things". Better yet – friends that laugh with me.
• v  Camping – I have so many wonderful memories of camping with my “family of origin” (my mom, dad, and siblings) and my “nuclear family” (my husband, and children) I learned those distinctive phrases from my Cancer Counselor. Which I guess reminds me of another one of my favorite things:
• v  LEARNING SOMETHING NEW. It can be just a fact or a skill. It’s exciting to me that it’s boundless. The Brain Rocks! Come to find out, even with some brain cancer in it!
• v  Children. DUH! Especially teaching them something new. One of my favorite moments as a teacher has been is when a child first figures out how to read. When they figure out that all those squiggly lines on the paper MEANS something. And by reading you can be transported into another world or imagine what it would be like to be someone else. Which brings me to…
• v  The Harry Potter series. J.K. Rowling is brilliant. In our household, a release of a new book in the series was quite an EVENT. We've even sorted ourselves into the house we believe we'd all belong. Apparently, they all think I'm a Hufflepuff.

• v  And obviously, having my Nuclear Family members together. My children are all so different from each other in many ways, but they’re all amazing people. And it’s great when I get to see members of my Family of Origin and (rarely) when we get to all be together. (See! Aren’t you happy you learned something new today? Being able to clearly distinguish what you’re talking about when you say “family”?) #yourewelcome

Well,  I should have given myself some limits like June’s top 25 Favorite Things or something because I just keep thinking of more and more…Maybe I’ll just pop one in any ole time like my gratuitous granddaughter pictures? Did you notice that I didn’t have to do that because I had the context again today. Score!

Okay, you've let me start. That was fun and uplifting! What about you? And you'd have to be dense to not see theme of my list and how different it is from Oprah's. [Do you need me to draw a Venn diagram? Didn't think so.  But hint: No elves required here.]

____________________________________________________________________________

*Yes, I know the word “scientifical” isn’t a word. But it should be.  

And P.S. I know that you can’t believe everything you read on the internet. I hope you do, too. Learn to use snopes.com and when something you read online makes you think, “Hmmm"The Dog Whisperer" was in legal trouble in court. And I thought he had died several years ago. Through a minimum of internet research, I found out that his death was a twitter hoax. Go figure. I'm just sayyyyyyin'.....

I just realized that I didn't really write anything in here about brain cancer. Interesting! Coincidence? or Something More? If you are feeling ripped off, I am working on my medical update page, so you can read some of that by clicking on the tab up above. ^^^^^

The One in Which I Ask What You Would Do

I think Steven and I are still ..."adapting' to the news we got that I had a recurrence in my brain cancer. It's "easier" now that we've made a decision about which option of treatment we'll be pursuing. Or I should say have already begun pursuing. On Wednesday, we received a calendar with all my appointments that have already been set up with UCSF for the next few months. It's reassuring in a way - for a Type A personality especially - to know what is expected on our schedule. But we're still in the very beginning and have no idea if this new protocol will have an effect on the progression of my disease at my secondary site. We are on Cycle One of a 28 day cycle. Day 15, I have a fasting blood draw, then a Neuro-oncologist appointment. If the numbers from my blood draw are okay, I have my "infusion. After six cycles like this, I will just be having the Infusion Days and no Chemo Days. (I think that's right. Sometimes it's hard to keep all the details straight.)

I've already joked about this on Facebook, but I'm only partly joking. I didn't know exactly what the Infusion was going to be like, exactly...but now I know that is NOTHING like a spa treatment (and if it's on the menu of any spa you visit, DON'T choose it!), and there are no tropical drinks included with little umbrellas and the scent of pineapple or coconut - or lime, even... <rip off!>

Hey, I thought you said "cocktail"!?!?!

It's basically a drug being "infused" through an I.V. tube into my blood stream. I'm so used to being poked with needles, I know which arm is the better one with the preferred vein. (Anyone who has had/has a condition that requires a lot of blood labs, etc. is nodding his head in understanding right now.) That day, I begin my 5 day chemo cycle - pill form - at bedtime. At first, I thought, "No big deal...no real nausea with the help of Zofran and the magical MM, etc" and the most reported side effect from this other drug is eye irritation. I felt okay. Meh. Not too bad

The next day; however...I've never experienced anything like that. I've been "tired" before - really, really tired before along the way of this 16 months of initial treatment. But with this new "cocktail", I felt like someone had injected some kind of heavy metal into my bloodstream. Maybe it was like Ironman? But truth be told, I've never gotten into that franchise, so I don't think he's as lethargic and lame as I felt at that point. If I'm totally misrepresenting that character....#freepass #braincancer

What I'm trying to describe is that It required tremendous effort just to sit up or lift an arm or leg. And it wasn't like sleepy, like I had experienced before. The usual prescription for my chemo side effects were not helpful - lots of napping and binge watching on Netflix and Amazon Prime. So, I lay there like a lump. I think I was a lump. A lump o' June. Not feeling very Ninja-like at all.

Picture Ironman all rusted and creaking out: "Oil caaaaan....."  like the Tin Man of the Wizard of Oz. NOT like the Ironman triathlon endurance competitors. Does that clear that up?

Let's just say that it was not fun. That pretty much covers it all.

My clinical trial calls for a second infusion on Day 15 - which will be tomorrow, Monday, February 22nd. Without a chemo pill chaser. So....who knows what I await! Like Cracker Jacks! OOOOH, a surprise in every box! Not as tasty, but the prizes in the box now are just stupid. right?

I've not broached this subject on this blog much, but anyone in a situation like this - not just the patient, but the whole family - inevitably has conversations about "quality of life" versus "quantity of life".

Steven have had several deep discussions on our daily walks lately. And it brought me back to something I thought from the beginning with my diagnosis. That was the birth of The #mfbcfnw! Raawwwwrrrr! I don't remember much about the first few days home from the hospital after my craniotomy, but I do remember sitting on my sofa, with my oldest, April, sitting next me. She was noticeably pregnant (due in March '15). There aren't really words to say to your child in that kind of situation. but I remember saying, "I'll fight this as hard as I can. I want to be there to see your baby...." <sobbing, of course>

This what makes this situation right now particularly fucked up to me. Because I DID fight and fight and fight. And Mother fuckers, I have survived for ...almost 17 months beyond my diagnosis! I'm planning on attending Autumn's first birthday in March! Wooooot! I'm feeling a little Ninja-ish right now!

But I'll admit, when I first heard the news about the new growth in the secondary spot, I was a mess. Lots of sobbing and shell-shocked, really. And in my head, I was thinking,  Am I going to be like aRusted Ironman the rest of my life? Where's my Mother Fuckin' Brain Cancer Fighting Ninja Warrior?

I kept thinking over and over...."I really thought I'd bought myself some time."
An interesting twist of words. "bought myself some time". Well, my doctors would say, Yes, you have. You did everything you could do. This disease is just a GINORMOUS MOTHER FUCKER. <(---I think that I added that last bit.) But I'll continue to do that which I can control over to try to give myself a few more weeks, months, or years with my family and friends. I will juice and drink combinations of kale/spinach/cabbage/romaine....(it's not as bad as you think - REALLY!) I'll continue to walk every day that is feasible - except my Ironman days (if I should have more of them)

And my brain-cancery mind has thinking about it...what would YOU do to "buy yourself a little more time"? And the thing, we ALL have evidence before us that tells that we CAN. No, there's no money-back guarantees, but why do we all ignore so much scientific evidence that we're shown that if we do X-Y-Z, that it helps us to prevent certain illness or medical condition that decreases our quality of life. And yet...and yet...

we don't do those things.

Kiddies, I'm not pointing fingers, and I'm not counting myself out of this phenomenon. 

Yes, death can be completely random. You could go out today and just get hit by a bus. Boom. No warning. But would you step off the curb onto a street without looking both ways if something was coming in your direction? I'm talking about a little itty bitty change that could contribute to preventative steps.

I really don't want to have this feel like a lecture. It's not meant to be lecture. Like I said, I've just been having this stuff bouncing around in my mind.

If there was ONE THING that I could leave behind today is to have you think about your life and what you are doing now. What you value. What you would lose if you were tragically diagnosed with a terminal illness. What would you do to "buy yourself more time"? My answer right now? Almost anything. To see my granddaughter's second birthday? To be there when one of my other children got engaged and went to a wedding attire shop to pick out their outfit...and I could be there? OR watch them walk down the aisle...graduate from college or earn a masters degree...

Or the smallest, smallest  things.... I was doing laundry this morning, and I was hanging up one of Steven's shirts. It's one that he has a tough time getting the collar "just so" over his tie, and he always asks me to fix the back of the collar to cover the tie. And as I hung that shirt, I thought. What if I don't ever get to do that again?  I'm not making this up. This went through my brain cancery mind this morning. 

So, yea. You can be sure that this #MFBCFNW is still fighting. RAAAAAAWWWWRRRR! 

No gratuitous picture of my granddaughter because I'm headed out to see her in a little while, and I'll take plenty of pictures then! So, come back later to see it! 

The One in Which I Describe My Amazing August...LIFE

In the last month, I've had four very special events - I was able to squeeze all that in because I had to have a root canal, and that pushed my chemo cycle back 2 weeks. So, let's all give a cheer for Root Canals! Hip-hip- ....haha! <silver lining, people!>

SKWinery BBQ -  Although, I just started working at the SK Winery last spring, they welcomed with me with open arms. They've been family to Steven for 18 years, and we have the good fortune to feel the love and support this year of this family. I hope someday, when I'm done with this chemo crap and my speech gets a little bit better, to rejoin the weekend crew in the tasting room. I'm sure they miss my singing in the tasting station between pours. <sarcastic tone> (You can blame my Mom & Dad for that one. Fremer Rule: Anytime something reminds you of a song, you must belt it out - or sing it under your breath when more appropriate. Catie has the same rule. Kindred Spirits! She even makes up her songs! I'm sorry you've had to go solo for the time being, but thank you for all your thoughts and prayers. <smooches!>)

Catie, my "singing partner", and loving part of our SK Winery Family in Patti's adorable BBQ Barn

Anyway, (that was some serious digression. #cancercard and TWO #freepasses) every year they have the staff summer BBQ. Last weekend, I was able to attend and be surrounded by our family winery. How lucky we are!

Hiking Trip - I wrote about this already (click here if you missed it), so I won't go into great detail about this. I'll just say that it's chock full of family and nostalgia and laughing and LOVE. (And that little bit about me falling on my tailbone. (Kiddos - Helpful tip: those little squishy neck pillows for flying? Work perfectly as tailbone donuts! See! even WITH brain cancer, I thought of that by myself! Imagine how clever I was before that bugger showed up*! j/k! <snortle!> )

Dad & his kiddos pretending we are just starting our hike. Psssst. Secret: We had already finished our hike.

Manresa State Beach - We have had a family tradition of camping at Manresa State Beach for about 4 days every summer. Yes, walk-in tent camping with a Coleman stove, campfires & s'mores, and sleeping bags, and card games by lantern light. The one "luxury" we allow ourselves are inflatable mattresses. I think there was a year when the girls didn't change clothes the whole time they were there - except for into bathing suits, of course. (A Girly-Girl just wouldn't understand the fun in that - We are not Girly-Girls.) Not everyone could come this time, and we missed you, April, Coffey, Autumn, and Katherine!!! The dogs, however, had a blast.

June, Aidan, and Sara on Manresa State Beach, August 2015 (A Girly-Girl would never wear that hat in public.)

This transition that our family is going through... It's natural when you have adult children, but it's really hitting me now because we've always had at least one child in the home with us. Our move to Livermore will mean that we have no children living with us anymore - the classic Empty Nest Syndrome. It's getting harder and harder to get all of us together at one time.  Steven and I took a page from my parents' book and decided that we'll continue to schedule Family Gatherings and cross our fingers that most of us can show up. If we wait until everyone's free, these gatherings become farther and farther apart. And our unofficial new designated Family Organizer, April, is doing a great job getting us together as much as possible. <Thank you, and I love you!>

Daou Winery- 
So, it was very special on Sunday to have all the children together, plus our granddaughter. Since Sara turned 21 in July, it's the first time that the whole family was able to taste wine together <eh hem> ... legally....in public. Katherine is still in Santa Barbara, so we were looking for a place to meet halfway. The ALMOST-GENIUS-IF-IT-WEREN'T-FOR-HER-BRAIN-CANCER (*see above) came up with the idea of meeting at Daou. It's almost exactly midway between San Jose and Santa Barbara, and it's an amazing view of the hills of Paso Robles. They serve real food paired with wines, and our tasting room associate was lovely and patient. Warning: if you ever find yourself surrounded by the six Mirassous, plus son-in-love, Coffey and little Autumn...it can be ....shall we say: overwhelming - in a good way.... in the most amazing, loving, witty, and raucous way you can imagine. Sara's boyfriend, Matt, has already acclimated himself to the chaos, and Katherine's boyfriend survived, so he passed the first test. (hee hee) Sometimes, I just sit back and watch my children interact, yelling and laughing across the table, and I get actual goosebumps. And I look at Schmoopy, and I think "We made this." And now Autumn has added a whole 'nother layer. (Which April & Coffey made...just to clarify...) Magical.

The Whole Family! Look at that view!

Autumn loves Grandpa Steven! He makes her laugh! 

Grandma June tried to get baby Autumn to take a nap, but there was too much going on! The snuggles were good, though!

As we were driving home from Daou, I was playing it all through my mind as I looked out the window - and I got to thinking about all the wonderful memories from just ONE MONTH of my life. I thought, I hope no one is feeling sorry for me right now. Not every month is like this one was, but this is my LIFE. I feel sorry for people that have never experienced the flood of love and laughter that fills my life. It may be cut short, and that will be sad if it happens, but please don't feel sorry for me. I am having the most magical, amazing, lucky life one can imagine. And I SEE IT. I FEEL IT. I GET IT. I'm not missing anything right now. As I've said before, some times we have to adapt - Life is constantly changing for everyone. But that doesn't take the MAGIC away.

I SEE IT. I FEEL IT. I GET IT.

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 Realized "I ain't got it."

This picture was taken on September 13, 2014. I already had a tumor in my noggin'. Isn't that freaky?

After I was diagnosed with GBM in September 2014 - after about two weeks of Steven and I feeling like we were adrift in a boat in the middle of the ocean -  we began to get our bearings. I began the process of recovering from my surgery, and we began to develop the plan for my initial treatments. In both the Los Gatos radiology department and at UCSF, they handed us a lot of papers and pamphlets offering resources to help us cope with the challenges ahead. I couldn't help noticing that Steven, as the caregiver, was being given a lot more more information than me --- ummm...excuuuuuuse me! I'm the one with brain cancer! I get it now. Being a caregiver to someone with such a serious illness is a grueling, relentless job.

In case you haven't gotten it yet, I have a pretty stubborn, Type A personality - in addition to having a potty mouth (BONUS!). It didn't take me long to get into that mode after the physical wounds started to heal. Tell me what I need to do, and I'm going to do it...to the nth degree. I was raised in a household in which Fremers didn't have headaches or stomach aches. (That's a true story. Ask anyone in my family.) I also inherited my father's analytical mind - break apart a problem, figure out the solution, and start plugging away. The more details you write down, the better, too! (Which actually turns out to be a good habit because one of my "cognitive deficits" is impairment of my short term memory - in other words, I suffer from CRS syndrome ....or Can't Remember Shit.)

I have my notebook for researching my Cancer and promising treatments. I have my notebook for planning my days purposefully to attend to my mind, body, and spirit - to do whatever I have control over to aid in my healing and survival. I usually seek support online when I need a community of like-minded people (shout out to my SAHMS - Woot! Stay at Home Moms whom I've known 21+ years), but the groups online for GBM are a major bummer filled with posts about "fallen warriors" and "angels who've gotten their wings". I respect their communities, and I know a lot of people get a lot out of it, but they leave me extremely depressed. Not helpful at all. I didn't pursue local support groups for the same reason.

For months, I was thinking, "I got this. I got this...." I am strong. I am brave. I'm a mother fuckin' brain cancer fighting ninja warrior!
but gradually, over the past few months, I've been feeling less and less certain. and more and more overwhelmed by my condition.

First of all, I can say without hesitation that my father was full of shit. #sorrynotsorry #freepass Fremers do, indeed, get headaches and stomach aches. Especially when they are receiving chemotherapy. Even the Queen of the Iron Stomachs. (If he wants to be a guest writer for this blog, I'm happy to give him the space to explain his side of the story. He is not ignorant nor stupid. This man has a PhD. and is still working full-time at 75 years old. He's not insensitive either. Maybe he's crazy? Just kidding, Dad! Love you! Xoxoxo! Near as I can tell, it was just to cut down on the whining of three young children over minor things.)

So, when I started to feel like maybe "I ain't got it!" it was a very unfamiliar feeling. And a very uncomfortable one, too. Maybe it was the gradual wearing down of my body and mind from the successive cycles of chemo? Maybe it's just....normal to have these swings in emotion when you have cancer. But I pulled out all the paperwork and made some phone calls and made appointments with a Social Worker and a Guided Imagery Facilitator. I met with the Social Worker on Monday. [By the way, I told her I owe her a whole box of tissues next time. I knew it was serious when she pulled her trash bin out from under her desk and handed it to me because I had too many used tissues to hold them anymore.]

I needed  - no, NEED help. Professional help. And I can't tell you how much it meant to just talk to someone about everything. From an objective and experienced perspective. One of the things that I remember her saying that helped a lot: (mostly because I felt like a stupid ass for not coming sooner) I said, "I thought I got this. You know?" She replied, "Well, you did have this. And then you didn't. And you asked for help, and you'll get back to feeling that way again." (She said a bunch of other reassuring and helpful things, too.)

And I stopped crying  (mostly) - and started smiling and laughing again. And it felt  - no, FEELS so good.

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 May When I Increase Your Awareness

Unless you don't follow me at all on Facebook, Twitter, or Instagram, you know that May is Brain Cancer/Tumor Awareness Month, I'm wearing Gray in May to raise awareness.

I tried to post a picture every day wearing gray on IG/Twitter, and FB, but I was stuck in bed for a couple of my chemo days. But I'm back!

I looked up on wikipedia about May and "Awareness Month"...and guess what? Brain Tumors and Brain Cancer aren't even there!  (They do include Zombie Awareness Month, though, so there's that...And apparently it's Aisha's birthday. Happy Birthday, Aisha!)
According to wikipedia.com, May is:
ALS Awareness Month (United States)[16]
Asian Pacific American Heritage Month[7]
Asthma Awareness Month[17]
Borderline Personality Disorder Awareness Month
Celiac Awareness Month
Aisha Santamaria Birthday <--- ???? (Kiddies, this is why teachers don't let you use wikipedia as a source for research papers)
Mental Health Awareness Month
Haitian Heritage Month
Hepatitis Awareness Month[18]
Jewish American Heritage Month[7]
Lupus Awareness Month[19]
Motorcycle Awareness Month[20]
National Bike Month
National Guide Dog Month (2008, 2009)
National Mobility Awareness Month
Zombie Awareness Month [21][22]
National Foster Care Month
Scandinavian American Heritage Month
National Skin Cancer Awareness Month

That's quite a crowded field, so I'm going to stick with what I know, even if wikipedia is totally lame. Trust me. May is Brain Cancer/Tumor Awareness Month.

Remember a couple posts back, I promised to talk about Brain Cancer & Brain Tumors? Did you think they were the same thing? Not necessarily. Read on!   There are an awful lot of awareness/knowledge out there of the experience of cancer. You or someone you know has/had it. And I'm so sorry for that. Today, I want to focus in Brain Tumor/Cancer Awareness for a minute. So, you can pretty much bet that this isn't going to laugh riot blog entry. Sorry! Today, I'm putting on my teacher hat to spread some Awareness about why Gray Matters!

I know I didn't have a clue about Brain Cancer or Tumors until there was one discovered in my own noggin'! So, I'm guessing you aren't too aware about it...I know I told you NOT to "Google that Shit" months ago...but we (Steven & I) have a responsibility as caregiver/patient to know what cutting edge and alternative/integrative treatments are available out there and the right things to do to prolong my life as much as possible. I have one more chemo cycle in June (assuming that my blood work looks good), and then we have some decisions to make.

So, we don't have any choice anymore about researching the facts. Knowledge is Power. I'm going to share a little bit of what I learned. You, however, have a choice! If you'd rather live in blissful ignorance (and I'm not judging you if you do), just close this window right now, and you're all good.

First of all, there is no known cause directly linked to brain cancer/tumors. Which sucks in some ways because I can't give some magic advice to help you avoid it. (Caveat: There is pretty substantial evidence that seems to link obesity and/or living a sedentary lifestyle to all cancers:  - but you already knew that, right?) Other than that, it's so random!

Something that definitely surprised me is that the majority (63%) of brain tumors are 'benign'. (We are talking "primary tumors" started in the brain instead of migrating from cancer somewhere else in the body.) We usually associate the word benign with not cancerous and therefore not harmful. (Okay, I used to do that, anyway...) And malignant as bad/cancerous, but....FYI: Even if a brain tumor isn't cancerous, mutated cells should not be up in there, taking up space in your cranium, and pressing on that precious organ: your brain - especially if they're growing quickly or in a space that's impossible to get at without injuring healthy brain tissue..  So, they, too, can be deadly. Even if they're not deadly, they mess around with the brain - ya' know the part of you that let's you breath and walk and talk and all kinds or important stuff ...damage to that can cause physical and/or cognitive deficits

I wanted to clarify that because there are a lot of people with "benign" brain are misunderstood Warriors. They can be a VERY BIG DEAL!

No doubt about it, though: Brain Cancer can be very deadly. This is the stuff that I just wasn't ready to look at 7 months ago. I knew if was bad - Hey, I ain't called The Outlier for 'nothin'! But does it matter what the statistics say? It's just numbers. So, let's just take a deep breath and look it over really quickly (or you can be a big sissy and scroll down and shut your eyes during the chart).

My cancer is a glioblastoma multiforme or GBM. (Why do I want to sing "The cheese stands alone..." after looking at that chart? Oh, yea. 'Cause I have a sick, twisted sense of humor.

Pause. Take a deep breath. Take another deep breath. Repeat five times with me:

FEAR IS FAKE. LIVE NOW.

Moving on...(If you need to take a few more minutes, just catch up when you're done breathing and chanting.) 

Or if you still need to cheer up,  play this a few times:

Back to some knowledge:
In actuality, there are 120+ different kinds of brain tumors! And they can grow in so many different locations in the brain. Plus, in the statistics, we're all different ages, and many patients have additional challenging, health issues (high blood pressure, etc) That makes it tricky to compare one person's experience with another.

Some call Brain Cancer an "orphan disease". If 138,000 people are living with a malignant brain tumor, and the U.S. population according to the census.gov is 320,899,806 ...(using my fifth grader teacher math - <eh hem> and my calculator on my smartphone), that's 0.043% of the population. So, I'm glad there's been some attention given to it recently. Some genius with some a lot of grant money will eventually figure out this puzzle, and survival rates will rise as they have with breast cancer and leukemia.

It can be is confusing with a highly hyped 60 minutes segment, a Time magazine cover, and GBM poster child, Cheryl Broyle's on the Steve Harvey show recently. (<---NO! I don't watch that show! I saw a promo! Phew! Reputation intact!) throwing all kinds of information at you which might pertain to a small segment the people with brain cancer/tumors. I think that many of my friends and family believe that we are going to plug into one of these clinical trials and ride off into the sunset, cancer-free. That's not how it works.

Here are some links if you want to research the subject more:
National Brain Tumor Society
American Brain Tumor Association
American Cancer Society

That's just a start. If you have any "hidden gems", please share them in the comments.

Who knows? Someone reading this right now might find the CURE.

Love, June Xoxoxo #mfncfnw <3

____________________________________________________________________

P.S. Just a little helpful hint:  I've noticed that sometimes people say things like, "I have such a bad headache. I must have brain cancer..." <---- I don't find that funny. Not even a little bit. I know they're just being thoughtless, but think about the next time you think about using it. k? Thanks!

The One in Which I Talk About Cancer Awareness and Support

Long before I was diagnosed with brain cancer, I had associated the color pink with breast cancer. They have done a great job with their campaign to build that "brand recognition" - pink yogurt tops and even an NFL day when football players wear pink. The Pink Brigade is strong!

True story: when I first started googling "brain cancer", among the top 10 possible links were always one or two "breast cancer" links - like it was a typo, and they are trying to helpful. Really?!?! Oh, google...sometimes you disappoint me...


Honestly, I didn't even know that every type of cancer had its own color. Did you? Look at all these! (There will be a quiz later. j/k!)

Do you know that lung cancer is one the top killers among the list, and its ribbon color is white? Something to think about. It also receives the least funding of any of the major cancer types. It's complicated. [Source: SF Gate]

Except, I knew dark blue was associated with colon cancer because my Rock Star Running Friend, Liz, does such a great job advocating since her diagnosis. <--- She's one of my role models and my heroes!

 When I found out that the color associated with Brain Cancer was gray/grey* (U.S. spelling/U.K. spelling), I'm not gonna lie. I was a little disappointed. Not that I'm a super-girly girl and have a lot of pink ribbons in my closet. But I didn't think grey was very compelling either...but now I've embraced GREY, and you will see me wearing it every day of May, Brain Cancer Awareness Month. Look out, Instagram and Twitter!  I went to Savers (local thrift store - hey, I'm not proud!) and T.J. Maxx to get a good supply of cute grey clothes!

I got a pin from zazzle.com to help start the conversation rolling.

So, what's the point of "awareness" anyway? Unfortunately, chances are, we will all be touched by cancer in one way or another in our lifetime. I think the latest statistics is that 1 out of every 2 males and 1 out of every 3 females will have cancer at some point in their lifetime. [Source: Cancer.org] Those are some sobering statistics. Awareness hopefully leads to two key things: 1) Prevention and 2) Funding for research to find a cure. Does it work? If the Pink Brigade is any indication - Yes.

The fact is that, at the moment, funding for research is not evenly distributed or distributed proportionately to the number/percentage of people that are diagnosed and/or die from that particular disease. Funding for research comes from lobbying (AWARENESS). So...what to do, what to do?

For a start, for the next month or so I will be doing two critical things:
I will be raising funds for all my fellow Cancer Warriors. Cancer is cancer is cancer - and all of us Warriors need support - survivors, angels, caregivers, family and friends...I got your back!
and
I will try to raise awareness of Brain Cancer during the whole month of May. (see above)

My Steven Kent Winery Family has been supporting the American Cancer Society for several years by participating in the Relay for Life. This year, I was honored to be asked to join the team, and they've even changed their name to "June's Wine Girl Ninjas"! Of course, we'll be honoring lots of Cancer Warriors from all our lives, too! Please visit my page to learn more about how to support our team! Thanks!!

June's Wine Girl Ninjas Relay for Life Page

And who knows? Maybe someday we'll see the NFL wearing GREY for a day and the cheerleaders shaking around GREY pom-poms? It may not be as "cute", but I would argue that the BRAIN is worth it!

*I am going to be using the U.K. spelling of grey because most of the awareness material out there is spelled that way - which is an interesting little tidbit of information. The U.K. seems far ahead of the U.S. in building an infrastructure for Brain Cancer Survivors to support each other (in my humble opinion).

[I know there is some controversy about the use of these colored ribbons - especially the pink ones -  and how much money actually goes to the cause from these corporate campaigns - but I would prefer to leave that out of this discussion. Thanks!]