The One in Which I Explain My Paradigm Shift

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

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

So...

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

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

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

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

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

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

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

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

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

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

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

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

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

Friends & Family 

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

OR...

The One in Which the Ninja Warrior gets Punched in the Stomach

Warning: This blog post is rife with cursing. To this, I say: 1) too bad so sad. I have a #braincancer @freepass and 2) I really couldn't give a fuck if you're "offended". The Ninja Warrior is feeling particular feisty today, so.... if you don't like that, move along, move along, nothing to see here....you're clearly in the wrong place.

This week has been a DOOZIE!

On Sunday, January 24th, we had an amazing Open House at our new home with the guest list tipping above 100+. That doesn't count the people on evite who didn't respond or said, "no" - and those of you who are saying, "WTF? I thought we were part of their circle of friends." I'm sure you are. Have I mentioned that I have #braincancer? and Steven has a wife with #braincancer? The invitation list was a clusterfuck. Weeks and days before the party, we were saying, "Did we invite ____ already?" Shit! And I'd be on evite trying to right the wrong. So, I'm truly, truly sorry if we inadvertently omitted you.<smooches!> It doesn't mean we don't love you!

Anyway, the party was a blast - Steven and I were celebrating so many things, but one of the biggest was Schmoopy & the Outlier were celebrating June being around for 16 months. Living our dream in a house right in the middle of the vineyard. Woohooo! 16 months is a big deal!

Here's me, playing my jam, "Fight Song" - Yes, it's totally hokey, but I never said I wasn't hokey. P.S. I am. DUH! 

Technically, I don't think that I'm "Outlier" territory exactly (if I remember my one semester of statistics at George Washington University - see below), but I know that it felt gooooooood. You see, GBM patients who go through the same treatment I've been through, Radiation (30 days) and Temodar (chemo) for over a year - the median survival rate is 15 months. So, if felt to me like I crossed a finish line, but there was no end. In my mind, I was fist pumping as I ran through the tape, but didn't stop. I was still running and running and calling over my shoulder, "I'm still heeeeereeee!!! I'm going to keep running until I can'ttttttt!"

The next day, Monday, January, 25th, I had an extraordinary experience of attending the TriValley Martin Luther King, Jr. Fellowship Breakfast and received a Legacy Award. (Kiddies, see my last blog post. Come on. Don't make me link it. Don't be lazy! You can find it, if you try.) All that you have to know for the purposes of this post is that the morning/day was another celebration for Steven & me. Not only was I survivor, but I was being honored for what I've done the last 16 months! Incredible!

They said it was difficult enough to fit those four words in my name, so #mfbcfnw was dropped due to space limitations,

Tuesday, I had an MRI. Truth be told, it was originally scheduled for Monday, but we had to reschedule it because of the breakfast. It was the last post-chemo MRI scheduled and a big deal because if they found it stable, I was officially starting the "Watch and Wait" without medical interventions. or "Watch and Live" stage as I renamed it.

I spent Wednesday morning with my notebook and the computer, making preparations for two new adventures that I had on my goal board within the next few months. I don't know if I've shared this with you already or not, but long-range plans can be hard because of my condition. I sometimes experience anxiety when Steven and I start talking about things that are far in the future. For example, he's been trying to nail me down on specifics related to our Wine Lovers river cruise in April. It's been on the calendar for about a year, but (...call it superstition?)


I think it's sold out, but if you want to read more about it, click here: River Cruise <----

I avoid talking about things that are THAT far ahead. But when I crossed that imaginary "finish line" and broke the tape, I began thinking that I'd bought myself some time.

I don't know why I chose this arbitrary length of time, but I felt like I had about six months of "waiting and living" to just keep jogging along before I had to face changes in my condition. It seemed reasonably short, but a wonderful respite from all the medical interventions. The cruise is in April, so I felt comfortable making plans. And we'd just booked flights in March for my youngest, Sara, and I to go to Florida with my parents and visit Disneyworld and Harry Potter World. Harry Potter World!!! I was on the computer, getting goosebumps, just imagining going to Diagnon Alley and drinking "butter beer" with her.

Diagon Alley!!! Awesome!!! ( I already told you a million times that I'm dork and love hokey.)

The evening of Thursday, January 27th, we heard from our neuro-oncologist via speaker phone in regards to my MRI results. It's like she grabbed my shoulders and stopped my jogging, saying, "Stop celebrating. The cancer is progressing." No, that doesn't really describe the experience. It was like being punched in the stomach. Only, my NO is so gentle and sweet, I can't imagine her punching me at all. But it sure was a whopping punch. Through speaker phone, she described what the UCSF Tumor Board saw in my latest scan. The dreaded words: "disease progression", and we arranged to meet the next day to discuss it further and talk about Next Steps.

Which brings us to yesterday, Friday, January 28th. I'm not an Outlier -- for now, anyway.

I hope to someday to be wayyyyyy out there as an outlier, but I'm still in the cluster of dots.

 I'm sure as shit still a Mother Fucking Brain Cancer Fucking Ninja Warrior.RAWWWR! Don't doubt that. And if you are sitting there with your jaws hanging open with shock and sadness...I hate to say, "I told you so."...but I TOLD YOU SO! GBM is a mother fucker! It grows. That's what it does. As Steven eloquently says, "Does a cat have an ass?" (Yes, he has a B.A. and an M.A. in Literature. Ah, that was money well-spent. haha!)

So, I knew this time would come. I just didn't expect it so soon. I feel good and healthy. I completed my first week from training for the Couch to 5K for fuck's sake! (Oh, when I said that to my NO, she said, "That sounds like a good plan." Have I told you that  I love my NO! So, I'm still planning on running/jogging/walking that 5K in March.)

We met with her at UCSF yesterday and went over the options for the next steps. We are still in shock and overwhelmed by the situation, so if I don't respond to messages or pick phone calls right away, please don't take it personally. Maybe some of you missed my first post about talking to someone (me, specifically) who has brain cancer. I've put a handy link HERE <---- if you're interested or left unsatisfied after reading this one post.

One thing that I talked about there that's still very relevant....please don't tell me that "I got this!" or "You can do it!" Don't get me wrong. I'm going to keep fighting, and doing everything that I can do to be a long-term survivor. But there are no guarantees. Even the doctors can't tell me how long I have. At least mine say that. Only a dick would say, "You have to 1-3 months." Right? They don't know. No one is a statistic. I'll keep doing what I can to control my health, but unfortunately, we can't control the cancer.

So, yea. That's pretty much been my week. How 'bout you? Actually, if I look at it in total, Sunday and Monday ROCKED, and nothing can take that away from me. So, there's that.

Of course, I'll keep you all updated on the Next Steps once we make decisions. and the ball gets rolling. At the moment, I plan when to start Week 2 of the training plan for Couch to 5K, keep on jogging, keep on jogging...And imagining pick out a wand with my Dear Sara in March. And looking out the window at the scenery along the Rhone in April.  And there's probably gonna be some chemo and other medical stuff in there, too...but I'm not going think about that right this second. 'Cause Schmoopy and I just took the dogs on a walk through the vineyard for a little bit, and I think I'll take a nap. It's so muddy out there, I might have to wait for my next C25K workout, though.

Remember: Life is happening Right NOW. Don't miss it.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

"Find the Fun! Live Life Now!" 

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

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

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

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

Love, June Xoxoxo #mfbcfninjawarrior

The One in Which I Talk About Rainbows & Unicorns (That's a Lie.)

I'm kind of speechless that this image even exists...Google rocks!
http://jess4921.deviantart.com/art/Behold-A-Rainbow-Unicorn-Ninja-89652879

This post has nothing to do with Rainbows or Unicorns. It's actually a pretty serious post about life & death. But when I googled "rainbows and unicorns", this is what came up, so I had to share it with you. You're welcome.

I've mentioned I've been struggling lately - emotionally - and I reached out a hand to this organization called cancer CAREpoint. [One again, I have to say that if  you are a cancer warrior or caregiver in the San Jose/Bay Area, they have so much to offer! Don't wait like I did to connect with them!]

So, I had an appointment this week with one of their professional volunteers - people who have private practices and donate their time to this organization to benefit cancer patients/survivors. I don't want to say that much about the nature of my appointment, (not 'cause I'm embarrassed, but because I want to respect her anonymity). It was the our first time meeting together one-on-one, so we talked about my experiences so far and what I needed from her.

At one point, she tentatively dipped our toes in the water and asked me, "Have you thought about your own death?" These people deal with patients with terminal diagnoses all of the time, so she said it much more delicately and expertly. But that's the first time anyone has so directly asked me that since my diagnosis. Let's just say that it's not the kind of thing you would bring up at a dinner party with someone who had a terminal illness. [Imagining drunken idiot slurring out, "So, how does it feel to know you're probably gonna die soon?"] Actually, with all the other well-meaning, but insensitive things that I have heard, it's kind of surprising that I haven't heard that one yet.]

But it was a relief to have someone ask me - and I could tell she sensed that right away. [I told you she was a Professional!] I realized that in some ways I was still very much in denial about my diagnosis, partly because my loved ones don't want to even think, let alone talk about the possibility of my death. Completely natural. But I'm in that place now. It you read my previous post, we're in that gray area now with my treatment - like, the doctors don't have any real answers about what to do next. In a lot of ways, it's all like a crap-shoot and pure Dumb Luck. Hence, my recent transition from 'I got this!" to "I ain't go this!"

Since you're not a Professional (or a drunken idiot, as far as I know) and wouldn't ask,.. The answer is: Yes, of course I've thought/think about my death.FYI: I'm not afraid of my own death, in the sense that I worry about what's going to happen. I didn't have a classic Judeo-Christian upbringing , so I don't think I'm going anywhere - no heaven, no hell. [I was going to say, "I hope I don't offend anyone out there," but you know what? My beliefs are just as valid as yours, so almost-apology rescinded. I am proud of my spiritual beliefs. I think they make me a better person and isn't that what it's all about?]

Just in case you missed it, if we go way, way back [in the Way Back Machine - DUH!], somewhere I said here in this blog that I believe that God is in all of us, not a man or separate entity, disconnected "above" us. The sum of  Goodness of us all is what I call God. I try to live my life with integrity, tapping into the Goodness within myself and spreading it around through my thoughts and actions. The more we do that - as a collective group - the more GOD shines through in our lives. I have never felt God so strongly as I have in these past months, with so many of you thinking about me and praying for me. I feel it, and it's a beautiful thing.

But it's difficult - especially for our closest loved ones - to think about our deaths. And there is even a superstitious quality to it, like if I start to think about it that I'm "giving up" or "bidding death to come".

Let's set the record straight: I do not want die any time soon. But I realized in that relief I felt with this woman's question that it's been in my mind...I would be crazy not to be thinking about it in my current situation...and I needed need to talk about it. She said something that hit the nail on the head with this analogy - Kiddies, I'm giving credit to her, although she may have picked this up from someone else or a book herself (She is a cancer survivor.) - Once a person has been told "You have cancer", it's like you've been handed a boarding pass. Of course, all of us think about death and know it's coming sometime in their future. But I have a boarding pass. Some people have boarding passes for journeys that are imminent. I'm grateful that I am just on "standby" at the moment, shall we say?Someone can say, "Yea, but we're all gonna die sometime!" But do you have a boarding pass?

So, it's like the OPPOSITE of Southwest - You DON'T want to be in that first boarding group, A. And no one is jockeying for position to get that extra leg room. [Okay, I think I've officially exhausted this analogy, so let's move on...]

This does not betray or negate all my efforts to be the Outlier and the Ninja Warrior who is going to continue to fight like hell to be a Long Term Survivor and have as much time as possible here with my family. No one knows when it will take my life. And I will continue to do the same things I've been doing - everything I can to delay my death. But if I were a bettin' man, I would say someday in my future, eventually, this GBM will guarantee me a seat.

Back to my conversation with The Professional:  I responded, "Of course, I think about my death sometimes. But no one really wants to talk about it." And that, my lovelies, is why I've been struggling lately. [cue tears]

Once I voiced this aloud to this woman, it was a game changer. It's taboo to talk about it in public. It makes people uncomfortable. Some of you are considering bailing on this particular blog post already because it makes you cry or protest. I can see you through your web cam. (Not really. but I freaked you out for second, didn't I? Busted!) But I will persist. This is my truth. I will not censor it to avoid offending anybody. We each must deal with what we've been given in our own way. In other words: don't tell me how to handle my terminal illness diagnosis, please. And I'll respect your desire to turn a blind eye if you must. Thanks. [Plus, I have a #cancercard and a #boardingpass now! neener-neener-neener!]

So, what do I think about my own death? As I said, I'm not afraid of what comes next for me. What makes me sad is thinking of my children, and grandchildren (Autumn and those to come),

Gratuitous picture of my granddaughter in her Disney Princess outfit Grandpa Steven picked out for her.

...and of course, my best friend, Steven. Just last night, we celebrated our "baby" Sara's 21st birthday. I am so proud of my children and the family Steven and I have made together. I think about missing birthdays, and Christmases, and Steven's Beloved Thanksgivings, births and weddings...I will be missing but not "missing" it, if you get my drift? What makes me sad is for my family having "that moment" where they reflect upon me not being there...and -  miss me.

But if you look back on my belief system, I think I WILL be there. In the heart and souls of everyone who is thinking about me. My hope is to leave a legacy that people remember - for it's Goodness. When people say that, "I know my father is here with us, looking down on me proudly, " I always thought it was a little creepy, like ghosts, watching over us. To me, our loved ones that have passed away are not over us or below us or among us...they are IN us, all the time. It's the legacy we leave.

The Professional and I spent a lot of time talking about the yin & yang of life & death, how they are connected naturally. She encouraged me - not to dwell on death - but begin to turn my head and look at it. Not avert my eyes in denial, which causes much more stress and anxiety. Instead, start to look at how death is inevitably connected with life.

The other day, Steven and I were on one of our notorious walks up The Hill. In case you haven't heard, it's dry here in California. I know that's hard to some of you to imagine, given the onslaught of rain you've had, but it's bone dry.

The hill is completely filled with wild grass,, and the landscapers are trying to get a handle on it because it's a huge wildfire hazard, but they can't seem to weed wack it down fast enough. This one day, we had a little breeze going through in the late afternoon which had pulled several of the shoots out of their "socket" and they were swirling in front of us in a loose circle. We stopped to watch with fascination, and Steven said, "We should video tape this." (which if you know Steven, is NOT his usual M.O.) But it was so cool, it was almost like magic. We could have fumbled with our cell phones, but  I said that it would never capture the magic of the moment. So, we just stood there and watched the dried grasses dance together, eventually settling on the other side of the path.

I was thinking about this moment on my walk yesterday and realizing that's a perfect analogy to what I'm trying to say about my death. The dancing, dried grass stalks are dead, and yet they contain hundreds...thousands? of seeds that will pop up next season. I hope I'm there to see them. In fact, I'm putting that on my Goal board: walk The Hill with Steven and watch the young buds start to pop up out of the ground. But if I'm not around anymore, and a magical swirl of dried grass "dancers" appears in front of Steven, I'm guessing that he will probably think of me. And in that way, yes, I will be there with him - but not in a creepy, ghosty kind of way - more of Good/Godly kind of way.

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 Unveil the GBM Warrior Weight Loss Plan!

Warning: The following blog post is for entertainment purposes. You might not find it entertaining - You may even think it's tasteless and insensitive , but if you don't get the Ninja Warrior's sense of humor by now - STFU! Obviously , this is in no way meant as real medical advice and results will vary. DUH! So, don't even try to sue my ass.

For the low, low price of FREE (you get what you paid for!) , we're offering you the:

GBM weight loss secret!*

You've heard and seen the results...at least from me. I've lost over 30 lbs. in the last seven months. Now, I'm revealing my secret...

Step One: (I'm not gonna lie to you. This is the hardest part!) You have to somehow get a glioblastoma multiforme malignant cancerous tumor in your brain. This may sound extreme, but are you serious about losing weight? Come on! The problem is...that this tumor is impossible to buy (I'm assuming...I haven't checked craigs list - you never know...) and completely random. You could try the suggestions below WITHOUT the GBM tumor, but you really need to be committed  - like, pretend you have the tumor. Hey, "Fake until you make it" Isn't that what they say? If you aren't lucky enough to have a GBM, you can skip to Step Five.

Step Two: At first, if you have, indeed, been diagnosed with GBM, you will have a reflexive desire to FREAK OUT and cry and wail on the shoulders of your best friends. Fortunately, presumably freaking out has some calorie burning qualities. You could probably "Google that Shit'...
Okay, I just did and there are plenty of hits on that one. FYI - if you're counting crying as your main method of burning calories/cardio, you might want to rethink your strategy. I have REAL brain cancer, and if you are pretending you have brain cancer to try lose weight...and I'm walking about 3 miles a day (non-chemo week) ...get off your ass and do some real exercise! If you have a fitbit, you can compete with me - Do you wanna have your ass kicked by a person with brain cancer? Think about it. So, connect with me on fitbit. Email: junemirassou@gmail(dot)com

Motivate yourself to MOVE with me!

Step Three: You get this cool, stylish hard plastic face-covering to wear - if your doctor recommends radiation treatment. There is one hour during the day where it would be impossible to eat anything worthwhile because the holes for the mask are far too small, plus your mouth is covered. You will burn some calories FREAKING OUT again the first few times at least, until you get used to being pinned to a metal table while they do their zappity-zap radiation treatment. Disclaimer: Sometimes, they prescribe steroids to help with the inflammation of the brain, and that actually stimulates the appetite, so you may not start seeing results until your initial treatment is complete.

Fess Parker Hat not included.

Step Four: This is when the real weight loss kicks in - chemotherapy. During the initial treatment, the dosage of chemo, isn't too bad - but it will definitely destroys your appetite when the dosages get larger. The tummy is sensitive - and often food tastes weird anyway. Again, only the LUCKY people with actual GBM tumors have access to this powerful poison medicine and BONUS! appetite suppressant .

OH, Mr. Gnome! What happened to you? Maybe it's because he's a bobble head?

And it arrives in the mail in this cool plastic bag with yellow Hazard text all over it. Imagine the fun you can have with recycling these bags for pranks after the medicine is gone! (The possibilities are endless!)

Step Five: After the FREAK OUT (see Step 2), start to research (Google that Shit!) "anti-cancer foods" and "cancer fighting diet". There are some controversies regarding this - but there are some principles that are widely regarded as "common sense" healing/healthy food.

So, like I said: You get what you pay for! [Kiddos: I am in the middle of creating a separate page with some REAL resources that might helpful, but I feel like a smartass today, so you get what you get!]

Love,
June Xoxoxo #mfbcfnw

P.S. I'm under a doctor's care and trying to maintain a healthy weight to maximize my body's ability to heal and be healthy. This is a JOKE! This is not supposed to be real medical advice.

*There is probably some cost involved, but the amount you owe is entirely dependent on your insurance. Thanks, Obama!

The One in Which I Tell You How Beautiful You Are

If you have been following my blog, you know that Steven and I went on a river cruise down the Seine in the beginning of April. I've left out a little detail that I've been wanting to write about, and now seems like the time.

I met a woman about my age the first day of the cruise - traveling alone and just gotten off another 14 day cruise! Her name was "Candy", and she had a little, spikey pixie cut in platinum blond. She socialized with the other passengers, but seemed very comfortable to be sitting alone, too. In fact, she often sat in the lounge area, alone, listening to the musical entertainment and...knitting. But knitting with a yarn/material that I'd never seen before. It was more like trim in a lovely wine colored string with metallic edging.

Wear Gray for May - Brain Cancer Awareness Month, Day 11 - American Brain Tumor Association

I remember I told you that I didn't bring a wig at all for this cruise - wanted to be bald and proud! - but I was cold most of the time, so I often had a hat on, even inside. <----probably one of the most annoying day-to-day side effects of cancer and/or my meds...It doesn't help that I have hardly any hair on my head!) I don't know if Candy thought I was embarrassed by my baldness, but one of the first days she came up to me, held my hands in hers, looked me in the eyes with the most intense, earnest look and declared, "You are beautiful. Don't ever forget you are beautiful."  I stammered, "Thank you." of course, but I was caught off guard. I think she may have thought my brain cancer had really affected my speech. We hugged, and she was off again to be her unique Candy self. Where ever you are Candy, you rock!

Candy and I sat together in the lounge sometimes during the cruise- especially when Steven was doing his wine presentations. (She really like the wine! lol!) I never asked her any probing questions. like why she was traveling alone or if she had experience with cancer...I figured if she wanted me to know, she would volunteer the information. I wonder still today about her adorable pixie hair cut - Was that a decision that came after a battle with cancer like me?

The day before the cruise was ending, she came up on me unexpectedly again. She had her knitting in her hands - only she has transformed it into this:

I am wearing it in the picture above - with NO HAT, Candy! - but the lighting is better here.

She said, "This is for you. Only on one condition: you never wear a hat with it. I want it to remind you of how beautiful you are." Once again, I was speechless, but with tears in my eyes this time. I was overwhelmed by her thoughtful and kind gesture. I knew how many hours she had spent working on this scarf, and I was honored that she would give it to me. Yes, it was a beautiful scarf, but the real beauty was right there in front of me: Candy. A kind, selfless act from a practical stranger.

I've heard from other cancer warriors what this is one of the positive things about their affliction: that they discover how many beautiful people there are out there - (That's got to be one of the best parts of having brain cancer <---Can you imagine starting a sentence like that? 7 months ago,  I sure couldn't) - so many kind, selfless acts over the months since I've been diagnosed, I can't even begin to name them. I told Steven I wanted to send thank you notes to everyone that have lifted us up during this challenging time, but I was so out-of-it in the beginning, how do I go back that far and begin? I know I would forget some people and feel badly. He said I was ridiculous, and that nobody could expect us to do that.

But I want some way to convey the gratitude for every beautiful person out there (Kiddies, that means all of you!) , whether you sent me a card or an email or a squirrel or bracelet...or dropped by dinner in the early weeks (you have no idea how much that helped our family!). The donations to our Family Medical Fund and more recently the donations to our American Cancer Society, Relay for Life Team. Comments written on Facebook and here...and all the pictures of people Wearing Gray for May to increase awareness of Brain Tumors. Steven and I attended the Livermore Valley Wine Auction this weekend, and so many people came up to me to hug me and offer their prayers...(Phew! It's a good thing you can't see the tears rolling down my cheeks right now...)

Dinner at Wente with Super Schmoopy AKA the Bald Hottie at the Livermore Wine Auction

Believe me: every little gesture of support means so much to me and my family. This disease has unexpectedly opened my eyes to how many beautiful people there are in the world. What a gift. So, thank you, Candy, and all the other beautiful people out there. I would send a handwritten card to each and every one of you, but I'm playing the #cancercard right now. #freepass This is my handwritten card just for you.

Love, June Xoxoxo #mfbcfnw

______________________________________________________________________

P.S. The only thing more beautiful than you is my granddaughter, Autumn Elizabeth. #sorrynotsorry

Autumn with "Mimi", the stuffed animal "Grandpa Steven" picked out for her in a little toy store in Paris.

P.P.S. FYI: We are already booked to do another river cruise in 2016 down the Rhone. Click on this link - Ama Waterways <---- if you are interested in joining us! If you don't know where the Rhone is, Google that Shit. Whoops, I almost made it through a whole blog post without cursing!

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."