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

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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!]