The One in Which I Talk About Forgiveness

I am dipping my toes back into some squidgy territory - I try not to post or talk about politics, sex, or religion unless I'm in a "safe place"  - but I've created this blog to share my mind, body, and spirit as a way to face this challenge of being diagnosed with a terminal illness, glioblastoma multiforme. This should be my ultimate Safe Space. This is me, and I've been focused on the spiritual lately. Feel free to skip this post if it makes you angry or bored. I won't be offended. Promise. And how would I know, really? See, you have a #freepass, too! But if you have the time and inclination, sit a spell and take in what's on my mind.

Cute Puppy picture to ease you into the seriousness of this post...

Depending on your perspective, you may be very surprised or not surprised at all to hear that I've been thinking about forgiveness lately. If you know June AKA the Ninja Warrior, you know that I don't believe in a God as an entity outside of ourselves, so how is forgiveness even applicable? Why am I even thinking about it?

Actually, I am thinking about it in two ways, because of my spiritual beliefs. Since I believe God/Goodness is in all of us - I would treasure forgiveness from anyone I've wronged, and I need to find forgiveness in my heart for people who have wronged me. I think hate and resentment are a waste of time -  (and I don't have time to waste). Also, I think it's toxic - both spiritually and physically.

So, even though I may be wrong about the details and specifics of God and heaven/hell, etc, if I strive to be a kind, loving, and generous person, I've done what I set out to do. I didn't do it to go to heaven. (because I don't believe in heaven) And I believe that if there's a God (like many, many of you believe), he/she will welcome me with open arms because I lived my life understanding: It's not about being right. It's about doing the right thing.  Please don't write me to change my mind or save me. I'm very comfortable with my faith and don't feel like I need to be saved. And if you do, I'll forgive you because I know your heart is in the right place. But I probably won't respond. Which is why I don't usually write or talk about religion, sex, and politics in the first place. By our age, we pretty much think we have it figured out and are not really interested in other opinions. So, I'm writing this more to reflect the Authentic Me, not to try to change anyone else.

I think I was meant to have blue hair, too. 

Someone asked me how I define "Good/Godly" and "Bad/Evil". Interestingly enough, most of the world's major religions are based on the same principles: Kindness, Generosity, Thoughtfulness...Love. And I don't believe that is a mistake. They all also have elements of their dogma that are exclusionary and unfair in my opinion. That actively HURT other people. That's no bueno with me.Which is why I have always found it better for me to not associate with any particular organized religion, but rather focus on the part of them that would make me better person. Because I don't believe in heaven and hell, it's not about being rewarded or punished for your behavior. It's about the legacy you leave behind. We are role models to the world - in some cases, "change agents". We can spread around Good and have it bloom within everyone we touch, or we can stoke the fires of Evil within people, spreading hatefulness and injustice in everyone we touch. And if we see someone/people doing evil things like this and do nothing to change it...we are accessories in a way, aren't we?

It's been far too long since my last Harry Potter reference!

My Internal Compass
I remember being very young and doing something wrong. I had a visceral reaction saying, "Stop. That's not right." You're hurting someone/something else. And if I did something kind or good, I would feel a different sort of feeling. A warmth, a glow... a JOY. So, what about people who don't feel this? I believe they have cut themselves from their spirit. (And I can name examples of this within every major world religion. No religion has a monopoly on this.) This is paramount to my belief system. TRY to tap into that goodness inside you every day. Feel it, embrace it, and use it as an "internal compass". I strive to be as "Good" as I can every day - but we all have faults. We all make mistakes. We are not perfect. But we have to learn to forgive ourselves for our imperfections. I continue to use my internal compass to shift my direction if I've gotten off-course and forgive myself.

My Internal Compass - Oh, shit. What if that compass in my head has been causing my brain cancer all along? j/k! :)

When it comes to forgiving other people, it's usually easy when I can see that if they've "wronged" me in some way, it's come from a place of thoughtlessness. Or they may even have kind intentions, but they have no clue how to get to their intended "outcome". And one of my Rules of Life is when you wrong someone, say "I'm sorry." An apology is so powerful.  I've gone over my life and thought about the good and bad that I have done - and I am working on how to be forgiven - by other people and myself. If I've wronged you in any way - please know that I'm sorry. I guarantee that whatever it was, it came from a thoughtless place. My intention was never to hurt someone...except that one time...(just kidding!)

When it comes to other people, I've mostly forgiven ... without any apology. I've come to believe that most people probably don't even know that they've hurt me so deeply that I've been carrying it around all these years. (Kiddies, something that you'll learn as you get older: most of us are so wrapped up in our own stuff, they aren't paying too much attention to you.)

What I am most troubled with is those that have hurt children. The Mama Tiger comes out. 

Warning: Don't mess with a Mother Tiger. She'll fuck you up.

That's why having/working with children can be so difficult. Their hearts and souls are so open, and they are so vulnerable. I remember my 2nd year of working as a fifth grade teacher, It was close to the beginning of the year, I had given a writing assignment with very specific instructions. As I walked around the room, looking over the students' shoulders, I saw one boy who had not followed the instructions, despite how clearly I thought I had been. <warning:any teacher will cringe to read the next part> I snatched his paper off his desk, said something (probably snotty and self-righteous), and crumpled his work up and threw it in the garbage. His face was full of shame and hurt. I felt that visceral "You've done something wrong" feeling immediately, but I was a new teacher (and this probably doesn't sound so bad to some). It's definitely Old School behavior, but I clearly hurt the student's feelings. I was trying to make a point, but I missed the point. I stewed on my shame the rest of the day and into the night. The next day, right away, I told the class that I had to talk to them about something important. And then I publicly apologized to this student in front of them all, admitting that what I did was wrong. The looks on the faces of the children in this class...I will never forget it. Adults can be wrong? Teachers can apologize? It changed the whole culture of our class for the rest of the year. I remember this incident, not because I carry shame today, but because this is an example of me righting my course after referring to my internal compass.
Apologies can be powerful.

Still Working on Forgiveness - Maybe You Can Help?
Honestly, the only people I'm having trouble forgiving, are people who have hurt my children. I'm working to get past most incidents because the person was thoughtless and the damage was minor. The Mama Tiger rears her head.

I have one person in my life that I am having a lot of trouble forgiving. Maybe you can help me? My younger two daughters played competitive soccer most of their youth. In fact, one of them continued to play through college. The other one was having a particularly rough time in early adolescence (Sometimes-I-felt-like-I-was-in-a-TV-movie kind of rough), and competitive soccer was one of the few positive things that she was still involved in. She had joined a new team in the fall and was very successful in her role as striker/forward, scoring many goals for the team, and had made many new friends. Her coach was clearly serious about building a team that would eventually make it to Nationals and win the cup. If ever I would describe a man as Machiavellian (and I don't think I have in my "real life - I had to spell check that sucker!), it would be him. We knew he was having problems with Sara's attitude/work ethic, but there was never a sit-down and talk about how we can improve your performance conversation in spring season. No warning, no "probationary period". She was cut from the team, unceremoniously, by calling her cell phone. She cried...no, sobbed - and will still occasionally sob when she brings the topic up. (This was 5 or 6 years ago!) He was a youth soccer coach. I entrusted my daughter to him not just to improve her soccer skills, but to help encourage her, support her, and form her during some delicate years of life for a young person.She never played competitive soccer again. And we had a very difficult couple of years with her. I wasn't asking him to replace us as parents, and I'm not blaming him for what came next. He was within his rights to cut her from the team, but he did it in such a ... unforgivable way? And imagine the difference it would have made in her life if he had not given up on her? I am trying to forgive him, but what were his intentions? It was not thoughtlessness. Maybe it was...but as I said, with children, it's different. I guess that's why I'm having such a hard time letting this one go. It was MY responsibility as the Mama Tiger to protect my child from someone like that. And for that, I'm sorry because I failed.

P.S. I think I'm FB friends with almost every single one of my girls' youth soccer coaches, so if you happen to read this far, Mama Tiger says,THANK YOU!

And Kiddies, Good News! You have control over this, too. If you feel yourself surrounded by Goodness & Joy, celebrate it, embrace it, stay where you are. If, on the other hand, you frequently feel that you are in touch with people that tap into Evil and Hurtfulness, get away from it as soon as possible. If you are having trouble doing it by yourself, reach your hand out and ask for help. Life is much, much better surrounded by Love, Goodness, & Joy. 

Trust me. Trust yourself.

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 Talk About my New Goals

I know it's completely normal to feel fear when one is diagnosed with cancer. I've read it, heard it, and experienced it. What one fears is not the same for everyone. That's seems normal as well. I remember my friend, Jeanne, who recently passed from pancreatic cancer, expressed a lot of fear about the pain in the end. That is not the fear that I try to push to the dark recesses of my mind. Maybe I'm naive, but I believe there is enough modern medicine out there for me to avoid a lot of pain in the end. If I'm wrong, don't feel the need to set me straight. This is one of those situations where ignorance is truly bliss.

As much as I try to avoid it, I do have fear that bubbles up to the surface.  My fear is that I'm going to miss so many things in life by dying "young". REALLY young people who are reading this blog are thinking, "What?!?! Is she off her nut? She's 50 years old! That's not young!" But older people understand what I'm saying. I'm a mother of four children, adults (mostly): 28, 24, 22, and 20. But I've got so much of their lives to see. I've been married 25 lucky years to my Schmoopy, but I thought I had at least double that to fill our lives with memories. I fear missing the weddings, the births, the family gatherings at Game Nights, Thanksgiving and Christmas, trips with my Schmoopy...or just sitting out in the evening around a fire pit and talking and laughing...

I swear that my tumor must be near some area of my brain that controls emotions because I cry at the drop of a hat, and I can't seem to control it. I mean really CRY - the kind of crying where you can't even talk so that anyone can understand what you're saying. And I breathe deep when it starts to come on, thinking that I will get my words out before the waterworks start, but it's hopeless. I cry like that at some point on most walks with Steven. I used to apologize, but now he tells me it wouldn't feel like an official walk if I didn't cry at least once. I told you our walks are like my therapy!

So, know when I write about this subject, I'm a mess: tears streaming down my face and strangled sobs in my throat. #sorrynotsorry

<grabbing tissues and wiping my face dry>
<Deep Breaths>

When I was first diagnosed and (mostly) recovered from my surgery, and I decided that I was a Mother Fucking Brain Cancer Fighting Ninja Warrior! (Rawwr!) I took a bulletin board out of the garage and re-purposed it. I hung it up and thought about everything that I wanted to experience in the next 6 months - things that I was fighting for.

As cards and email and letters poured in from June's Warriors, I hung those up around the board and I regularly gazed at that corner as I was getting ready for the day.

(Kiddies, Here's a little tip for you: you gain a lot more time in your day if you shave - or lose- your hair. I must save 40 - 60 min. a day not having to fuss with my hair anymore.)

This weekend the family went down to watch Katherine graduate from UC Santa Barbara.  As I was waiting for Katherine to walk down the aisle for her commencement, I realized that this was the last event that I had pinned to my bulletin board. As I started to tear up, I tried to express this to my father and husband (whom I was sitting between), and after several attempts to talk through my blubbering tears, I got the message across. My father leaned over and gave me a big hug and kiss on the head. (A moment I wouldn't ever want to miss - see how that works?)

Both of them said the same thing: "Better get some new goals up there ASAP!" As soon as I got home from UCSB, I started my latest chemo cycle, so I'm not all that spry, but the more that I've been thinking about it, the more that this assignment seemed too pressing to wait until my chemo cycle was over on Friday.

Yesterday, I unpinned each card and message from all of you - reread them and smiled (yes, and cried - #freepass!), as well as my pictures of my goals and tucked them in a basket that I now have in my "meditation corner". The positive energy emanating from that basket must be off the charts!

By the time I finished that, I had to lie down, take some anti-nausea meds, and binge watch some more "Orange is the New Black" and nap. So, I woke up this morning with a blank bulletin board. That seemed like really bad karma, so I set to work importing and printing my new goals.

New board includes room for more goals as I think of them...

The first time I did this, I was afraid to go too far beyond 6 months. Why? I'm not sure. I guess that my prognosis was so shitty that I couldn't get my brain to dream beyond that. This time, I've gone into next year. My last goal up on the board is to attend Autumn Elizabeth's first birthday. But I think maybe I'm allowing the "F" word (FEAR - what did you think I was talking about?!) to interfere with my goals. And what do I really have to lose by planning for something in 2017, 2018? Wouldn't it be something if I were to witness Autumn's first dance at HER wedding?

April & Coffey's first dance - (Notice my parents in the background.)

A ninja warrior can dream, can't she? Yes, she can!

The One in 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."

The One in Which I Took Forever to Finish

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

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

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

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

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

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

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

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

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

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

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

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


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

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

______________________________________________________________________________

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

Autumn Elizabeth & Grandpa Steven

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

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

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