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!]

The One in Which I Question Why You MIGHT Think I Look Healthier

You know June is feeling better when...you get two blog posts in two days! Yay! Bonus!

I apologize in advance if this one is a little rambly. I've been thinking about this issue, from another angle, for quite a while, but it was this video that multiple people posted on Facebook yesterday that pushed me over the edge:

As I've said before, I've struggled with my weight throughout my life, and in fact, this blog was originally conceived as a space where I could share my attempts to "live a full life". At the time, I thought that was finding balance with work, family, fitness, etc. This was way before my diagnosis.

By the way, I neglected to acknowledge my cancerversary! How silly of me! I was diagnosed on September 24, 2014, which means that it's been 7 months since I found out that have GBM!

I always thought that couples "month anniversaries" were so lame. 7 months living with cancer? I'm alive? Woot!'

Pre-cancer, I was one of those women who never felt that I could get it right - never felt that I measured up to standards. If I focused a lot on weight loss and exercise, I felt that I was neglecting my family and my work. I was always trying to do it all, be it all....let's face it: be perfect. I started following twitter personalities and communities, searched using keywords like: "fitspo", created numerous boards related to fitness and "health". <---notice I put that in quotes.

And then...and then...I found out that I had brain cancer. And not too surprisingly, my focus was/is on something else. I unfollowed many people on twitter, stopped searching "fitspo", deleted pinterest boards and started new ones.

One thing that I've noticed when people who haven't seen me since my diagnosis...it's very subtle, but there's a quick scan of my body and a very well-meaning response, "You look GREAT!" I know some of that comes from that instinct: I thought you would like you were on death's door because you have brain cancer, but I also noticed that you've lost a lot of weight kind of look. I'm sorry...there's something kind of fucked up about that on a level I haven't quite processed yet. #braincancer #freepass

I know not everyone is commenting on my weight loss. I have to admit that I do look ...well, healthier, than I would have expected at this stage in the game.

Do you want to know my secret? Kiddos? Eating things (when I can) that I've extensively researched that I think will help me live longer. <cross your fingers!> 
side note: I wonder how many people would actually "subject" themselves to this without cancer. You decide...

No, I don't eat just fruits and veggies - but isn't this purty?

The things I eat that will help me live longer are the same things that will help us ALL live longer*...and feel better...and yes, be HEALTHY <----notice that this is NOT in quotes.

I'm not one of those people who's been on a million diets - I've never done the cabbage soup diet, or cleanses, etc. I've done one paid weight loss program, which I won't name here because I don't want my ass sued. Truth be told, I lost a lot of weight with them...more than once. And it involves you making choices - which is a good thing, because your (theoretically) learning how to eat "healthy". But people will always find a way to wiggle around "the rules" because let's face it: we have an UNhealthy relationship food. We are using food to satisfy needs other than fueling our bodies. And that's a whole 'nother kettle of fish that I'm not going tackle here.  Helpful hint: eating a whole bag of "baby carrots" or an entire watermelon isn't probably a good idea and those "100 calorie packs" are 100 calories because there are only a few cookies/crackers in each bag - still, they're loaded with processed white flour and sugar.

The calories in/calories out has been in so drilled in to our society that it's practically spoon fed to us as babies. (sorry for the horrible pun!)

Gratuitous picture of my granddaughter, Autumn, who isn't even eating with a spoon yet. Isn't she adorable?

#freepass #autumncoffeykid < -- Yes, she has her own hashtag! DUH!
</rambleoff>

And shouldn't that be a red flag when you hear yourself saying: "It's the only thing that works for me..." but I have to keep going back to that because it isn't really my lifestyle? It's something I "do" for a certain period of time to lose weight? 

Another bad pun! haha! Sorry. I've never like ham anyway!

I'm not going to bore with you with details ...I find that most people have a very low tolerance for being told what's healthy eating. And I've found that there's some a lot of controversy out there. If you're actually interested, Private Message me and we can talk. The one message I want to get out is this, regardless if you want to lose weight or just be healthier:

STOP EATING CRAP! STOP EATING PROCESSED CRAP!

Lean in to the screen so you can really hear me: 

IT'S. NOT. FOOD.

It's just like the video and the photoshopped girl. That's not a real person. Most of what Americans eat is not real food.

EAT LIKE YOUR LIFE DEPENDS ON IT. BECAUSE IT DOES.

And if you should see me sometime soon and say, "You look great!", I promise I won't take offense! I have lost a lot of weight because I'm living a much healthier lifestyle - Really!

...except for this whole brain cancer thing.

*disclaimer: I am not a doctor, nor do I play one on t.v. Who knows? We could be hit by a bus today! FEAR IS NOTHING. LIVE NOW!

Love, June Xoxoxo  #mfbcfnw

The One in Which I Talk About Being the Queen of the Iron Stomach

I do not throw up...

STOP! No, no, no!

Please, don't click to leave the screen! Don't you trust me by now to have a point when I say seemingly inappropriate things?? There's a point to all this, but you have to keep reading to find out.

As I as saying, I pride myself on having "an iron stomach". I don't know why. I have an extreme aversion to vomiting - and I'll use every bit of my will to stop it from happening, no matter how much I feel like I need to. I think I deserve a crown and a title for this, no?

The real one, I want made out of gold and precious stones, of course. This is just a rough idea of what it would like.

 In fact, I have only two real memories of throwing up - The first one is a kind of cute one actually.

Kiddies: Way back when, in the 60's, when I was a little tyke, there were no dvds, no digital t.v. recorder, and not even any VHS tapes! So, when you wanted to watch your favorite show, you had to wait until it was actually being broadcast on t.v. And if you missed you, you missed it. I know! Hard to believe!
 

Well, it was nearing Christmas time and my favorite, favorite, favorite Christmas special was on that night, "The Grinch Who Stole Christmas" (the original, obvi!)

I love that dog!

My mom had made my favorite dinner, lasagna (so, I might have overindulged in that?) but I remember the beginning of the show being introduced on our t.v. as I was dressed in a flannel nightgown and grabbed our huge, green throw pillow and plopped myself on the living room floor on my stomach and settled for the BEST show! Only within five minutes,without warning, I threw up all over that pillow! (Remember, t.v.'s could not be paused at that time!)  To her credit, my mom didn't seem upset as she cleaned me and everything up...in fact, I remember she giggled a little bit - seeing the humor in it all. She's still a sport! Thanks, Mom!

The second memory... involves shots of liquor and a good friend that held my hair back from the toilet. (Thanks, Allison!) But I really don't remember it. So, it doesn't count, right?

I hereby decree that I retain my title as Queen Iron Stomach! 

<Trumpets blare>

That's why when I began my post-surgery treatment for my GBM, my radiologist and oncologist prescribed two kinds of anti-nausea medications, I thought, I won't need these... (Reminder: my treatment was: 30 days of chemo (Temodar)- 7 days a week, and 30 sessions of radiation, concurrently, M-F) The radiation technicians always asked me how I was feeling, and they were amazed when I told them, no. I was fine. A little ginger tea and being careful what I ate was enough to combat the queasiness. I did have fatigue at times, but I listened to my body  - I napped pretty much every day, but tried to take walks - long or short pretty much daily. My doctors were very pleased with how well I was handling the treatments, too. Yay!

After my little rest from the initial treatment and my January MRI, I began the next step in my treatment: Temodar - 5 days on/23 days off as a cycle. Temodar is the same chemo that I took during the whole initial treatment, albeit in a smaller dose. It's a pill form that I take at home right before bedtime, so I (hopefully) sleep through the worst of the nausea. What nausea? Oh, that's right. They neglected to mention that I was going to have a MUCH larger dose of chemo now. In fact, after the ramping month in January, February and March's dosages are TWICE what I was going during radiation. ZOINKS!!! (Okay, I have brain cancer. They probably told me, but I just don't remember.) #freepass

In March (the first month of the new dosage), Day 1, 2, and 3 are okay...Ginger tea, ginger this, ginger that...okay. Day 4 March's cycle, I broke out that anti-nausea meds that they had prescribed way back when. I took it right before I went to bed. Who knows if it made a difference? By Day 5, I surrendered to my bed. I figured if I was able to fall asleep, my body needed rest  - and it had the added plus of making me unconscious to the very real, very intense nausea I was feeling. Day 6 (the day after my last chemo pill), I felt pretty much the same way, and then I slowly started to bounce back.

As I've just written about in my blog, I was in France almost the whole first two weeks of April, so they postponed the Temodar cycle by a little bit. Again, Day 1, 2, and 3, were okay. I was using the anti-nausea meds every night. I don't know if it was because I was jet lagged or that I was unable to really sustain my VERY healthy diet I have here, but this cycle kicked my ASS! I don't know if I should be allowed to retain my Queen of Iron Stomachs crown because I stayed in bed or on the sofa, buried in blankets for two days straight. I never threw up, though? The worst feeling is that you are so sick you can't eat anything and that makes you more sick...

STOP! No, no, no! 

"The worst feeling". Really? Really, June?!?!

Let me try to redeem myself from this lame statement above....
I've got a strategy to help me through my challenging times: 1) I try to learn from my mistakes. I try to keep track of what I've done and the results. Makes sense, no?
2) I delve into the standard practice of thinking about: "It could always be worse..."

When I first returned from France, I binge watched HBO's "Band of Brothers" because I was so interested after visiting Normandy. During the last couple days, I've watched "The Pacific", which the companion series about the American assault in the "Eastern Theater" during WWII. [Picture me with headphones and my ipad, wrapped a gazillion blankets.] In a strange, twisted way, it reminded me that I had better quit my whining - that what those guys went through...Let's just say that I'm not going to earn any medals of honor for feeling like I want to throw up a lot but not.
(But I'm keeping my imaginary crown!)

I also read a lot of blogs and webpages about other people who are living with cancer. And it's a guarantee that everyday, I read about someone who reminds me "It could be worse..."Like Valiant Vito, who (and his mom) inspire me every day.

What I'm facing is nothing compared to what they faced. There are some similarities, I would argue, though. We're all scared sometimes. And we all have to figure out how to keep our heads down and keep going. And the acceptance of the randomness of it all... Sometimes life is so damn random.

I didn't write this blog entry to have you all say, "Sorry, June, that you are going through a tough time." or "I'm sorry you're not feeling good." I'm not fishing for sympathy. Promise!

I try to make my blog about giving some window into the world of someone living with cancer. And if you are someone living with cancer, I hope you take away some feeling that you're not alone. We are just warriors trying to keep our heads down and keep going. We can do this!

And to make sure I retain my crown of course.

The One in Which I Went to Paris

I had been to Paris, France three times before this trip, but never with Steven. Crazy, right?

Charles de Gaulle christened my new passport!

1) The first time, I was about 14 years old (there's a mini-debate about the actual year, which could easily be resolved if anyone cared to look in any of several documents, but it's a family thing. You know...) I have no insight as to why my parents planned this trip, but I'm sure that's where I got my wanderlust. In fact, I was scheduled to attend a celebration of my dad's 75th birthday in Paris with them and the two oldest grandchildren in the first week of November 2014, but then I was diagnosed and had a craniotomy in the end of September, so THAT didn't happen quite as planned...

2) I spent a semester of my junior of college in Aix-en-Provence, France, and I flew in/out of Paris. If you don't know where Aix is...you know what I'm going to say...all together now: Google that shit! And everyone who is reading this that is in college or going to college soon (I apologize for the cursing...) Go for a semester abroad! I'm not messing around. Do it.

3) After I graduated from college, my parents gave me the most amazing gift of tickets to Paris and a Eurail pass. That pass let me get on pretty much any train in Europe and just travel for about 6 weeks! A-MA-ZING!

And then there was a little gap in my travel...okay, I didn't go back to Paris/Europe again until....2 weeks ago. Why? Well, there was this little thing called LIFE - a marriage, four kids, back to school for two years to get my teaching credential, a full-time job teaching...Don't misunderstand. It wasn't the time that was a factor. It was $$. We always chose to spend our $ on other things. We traveled within the U.S., but Steven and I had never been out of the U.S. together! Crazy to think about!

Then an opportunity came up: Steven was asked to do a Winemakers Cruise on the Seine with AMA Waterways.   
Kiddies, let's see if  you have been paying attention...the answer to "Would you like to do a river cruise on the Seine for a week?" is always what?
YES!!!  
Oh, goody! You ARE learning some things from me!

So, we said yes - geez, probably a year ago exactly. And all was hunky-dory and we were very excited, of course...And if you've been paying attention, at that time in 2014, I thought I was going to go to Paris twice in one year! Score!

Then I was dx'ed with GBM in the end of September 2014. The November trip was off the table. <sniffle, sniffle> and I wasn't at all sure that I would be able to go in April. A little insight here: When someone tells you that you have Grade IV brain cancer  - something that's nicknamed "The Terminator" - you aren't at all sure about anything. Like, at first, should you make an appointment to have your oil changed next week. No joke.

But I survived the first 30 day treatment, and I had follow up appointments with my doctors in January when I started my Temodar routine.  At my February follow-up appointments,  we asked about this Paris trip, and they said, "Why not? If you're feeling well enough at that point and things are still looking good..."  Well, slap my ass, and call me Sally! Okaaaaayyyy!  Game on!

My MRI in March was stable, and so I was off to the races! (See what I did there?) I packed a gigantic suitcase and got ready for our trip. The rest of this blog entry I'll answer the burning question: Is it different to go to Paris living with cancer? If you want the short answer: Well, of course it is, silly! Everything is different living with cancer. But that doesn't mean that it's all bad.

My plan was to go full-baldy the whole time - for the first time. I didn't even bring my wig because I didn't want to chicken out. What I didn't count on is being cold most of the time! Eek! (One of my anti-seizure meds makes that happen.) But thank goodness I brought some hats. Bald heads get cold! Steven says so, too! I have so much sympathy with baldies everywhere! But I did go baldy as much as possible:

The first night, they planned to embark by 9-10 p.m. so we could all see "a surprise".  They sailed the opposite direction a little bit so we would have a good view of the Eiffel Tower when it lit up.

We were using our lame camera phones so it doesn't look nearly as pretty as in real life  -- but isn't that true about everything? In fact, I was dumbfounded when I started downloading our pictures and I realized most of them were on Steven's phone - not my camera or phone! I was just in the moment instead behind the lens like I used to be!  (Remember when I said some things are different living with cancer? Exhibit A) And guess what? There are a fair amount of pictures of me! Go figure!

After the fanfare of Paris and the Tower, things settled down. We were sailing through Normandy - which I had never been on my previous trips. And as a certified History Geek, the only real images I had in my head was D-Day and the beaches. But Normandy is a region that I bet you could find a cat riding a unicorn with a rainbow in the background if one exists...which is to say that it is gorgeous - in an other-worldly kind of way! Why do we make these crappy looking houses in the U.S. when we would have stunning homes made of stone and wood?  
Look. at. this. beautiful. home.

 And. this!!!

I highly recommend this cruise down the Seine! Although, if you are living with cancer, you might want to pack  more warm clothes...

Notice the man behind me without a jacket on...just for perspective!

 Okay, it wasn't ALWAYS that cold!

Also, I slept a lot. Daily naps are really important to me, and we were walking and on our feet a lot every day. In fact, we missed entirely all three possible guided tours of the Chateau Gaillard (Google is your friend, people!), but when I got up, we decided to go rogue and do our own tour. We had to hustle up a hill to see it, but it was fine and we even had time to walk the quaint streets of Les Andelys.

View of Les Andelys after trek to Chateau Gaillard

The Ruins of Chateau Gaillard as seen from ship - It was worth the walk to see the "real thing"!

Oh, and every day, Steven did a 45 - 60 minutes winemaker presentation, which were very well-attended. I was supposed to keep him on track so he didn't go over an hour. I'd set my phone timer and every 10 minutes, I would put a "10 minutes" to signal time spent. I think our signals were crossed because I'm pretty sure he interpreted that as "mambo dogface in the banana patch..." (Sorry, Steve Martin 70's reference for all you wild and crazy guys and gals out there!)

We had ~24 Steven Kent Winery club members sailing with us, too, and it was awesome to get to know them all better. We had the pleasure of having meals with many of them and tours. I won't post their pictures on here because I don't have their permission, but if you happen to be reading this and are okay with  public posting, just shoot me an email: junemirassou@gmail.com. In the meantime, y'all are going to have to use your imagination! haha!

The most anticipated stop for me on this trip was the beaches of Normandy. Now that I've been there, I almost don't want to post pictures of it all because there is no way to capture the feeling you have when you're there. Imagining these young men - boys, really  - being dropped in the water or falling from the sky to try contend with what they'd been sent there to do...it's hard to even think about...

9,386 Americans are buried in this cemetery in Normandy. It is estimated that there were 135,000 American casualties total as a result of the Normandy invasion. Let's all take a moment of silence and gratitude, shall we?

After Normandy, we turned around and started back to Paris. We ended up four full days there, but that's when I think all that activity started to wear on me. And it was a challenge to time my medications and meals because my meds made me sick on an empty tummy. I just want to make it clear that I am NOT complaining about my trip to Paris. As I said, I'm just trying to explain what I said in the beginning: how it was different with cancer.

I had pictured that Steven and I would visit all the major sites: Eiffel Tower, Louvre, Musee Picasso, Notre Dame, Versailles...followed by romantic late nights in bistros or wine bars. But it quickly became apparent that I was capable of about 4-5 hours of walking. (If you haven't been to Paris before, it is a walking city. there is also excellent public transportation, but since I've been there last they added this RER to the Metro system, which is sort of like BART in the Bay Area? And truth be told, part of Paris is seeing the streets. Check this out! Steven even got all artsy and took these pictures:

We managed the Musee Picasso - which is amazing, but overwhelming, and the de L'Orangerie which has a room with four enormous panels of Claude Monet waterlilies - breathtaking! And we did end up using the RER/Metro to go to Versailles because I was adamant about Steven seeing it.

In the gardens of Versailles - I call this my Inspector Gadget look. Don't blame me. Steven picked out the hat in a vintage store in Le Marais, and he kept declaring how "awesome'" it was. Xoxoxo

After all the activity of the day, I was barely able to stay up until 8 or 9 p.m. and a couple of times, I think I skipped dinner altogether. There were no late stops to wine bars, although I think Steven went down the street from the hotel to one once I was asleep.

Kiddies, I never lie to you, so I'm going to confess that I had at least two complete emotional breakdowns because I felt it wasn't "fair" to deny Steven all that Paris had to offer because of my lame physical weakness. He brushed my tears away and reminded me that all he wanted was to walk the streets of Paris with ME, soaking it all in. And that's what we did. 

The thing I'll remember most about this trip is that I spent thirteen days, pretty much all my waking hours, holding my husband's hand. And every once in a while, he'd pull my hand to his lips and kiss them softly and say, "You know, I love you." And I'd say, "I love you, too." and he inevitably would counter with, "No, I REALLY love you." or "Not only do I love you, but I'm IN LOVE with you."