The One in Which I Talk About Christmas 2015 - One Year Since I Started Treatment!

December 12,2014, I began my treatment for my brain cancer: 5 days a week of radiation and 7 days a week of chemo.  Although I am sometimes mistaken about little details , I'm pretty sure I'm right about this one. I think at that time, my family was hoping for the best, but aware that I was facing bad odds. In fact, the unspoken vibe I felt was that we may not have June around next Christmas. My parents generously asked, Where do you want to spend the holidays?" I responded, "Capitola" (my favorite place in the whole world) And they made it happen. All my children (plus some "significant others"), my parents, my sister, brother, and his significant other, and briefly my niece and her family...and of course, our two doggies! spent Christmas week walking in the albeit chilly, but sunny and quaint village of Capitola. My goodness, Capi is named for Capitola! And we had such a lovely time, we swore we'd do it again in 2015. Click on this link if you want read about last year's experience.

Capitola-by-the-Sea

Sure enough, my parents helped make this happen. But everything was different this year. (Funny how that happens. Life changing things and stuff.) My children are growing to "real adults" with jobs and responsibilities, and some weren't able to take a whole week off from work. My sister also wasn't able to make it. And, of course, we had the addition of our first grand baby...a joy for us and a huge change for my daughter and son-in-love. Their adorable, smart, and brave daughter (I insist that girl babies hear descriptors that go beyond their beauty.), Autumn, requires a great deal of attention and has become the center of her mom and dad's universe. Absolutely rightly so. In fact, we only had one afternoon when our whole family was there together. So precious!

El Niño made a huge impression on our holiday week,too, bringing lots of rain, rain, rain. That didn't really bother me. I always say, "a bad day at the beach is always better than a good day anywhere else". The doggies weren't so keen on going for walks, though. And Steven refuses to get rain jackets for them since it would rob them of their dignity. But Steven managed to coax them along at least once a day, along the river.

Another highlight of the trip was having lunch on the patio of Zelda's with almost all the family. I think the hostess thought we had lost our mind when we asked to sit outside. Hey, it wasn't raining! It was pretty cold, but they wiped off the chairs and let our crazy crew eat lunch with a gorgeous view.

What I'm trying to convey is...life goes on (yay!) and it changes (also a "yay!" because wouldn't it be boring if always stayed the same?) But the changing thing is something that requires some processing and adjustment. One of the new traditions we had planned was to wait until we arrived at our vacation rental, get a big tree, and decorate it there. We've never done that before, but I had always heard that some families have the tradition of doing this on Christmas Eve, so I wasn't concerned. Steven and I set off on December 23rd to get the tree. All the decorations had been brought down from San Jose...only we went to every possible source in the area, and they had no trees. I guess people don't do that Christmas tree tradition anymore? I sat in the passenger seat as we drove from place to place, only to be disappointed with a shake of a head and suggestions of where to try next. I was trying to hold back tears and talk myself out of my disappointment. After all, it wasn't like one of had brain cancer! (Oh,wait....)

We ended up at Orchard Supply - where all the trees were gone,too. But they had some sad Charlie Brown potted plants. And my hidden and sulking attitude adjustment got kicked to the curb. If we can't have a beautiful 6-8 foot towering, impressive tree, we could certainly strive to have the ugliest tree! So, Steven and I picked out a plant that we decided was the fern version of Cousin It from the Adams Family.

I introduce you to the Cousin It of Christmas "trees".

We bought a hedgehog made out of a pine cone for the top (with a blue LED star to enhance it. DUH!) . And a plant stand to give some dignified height - and less likelihood that our doggies and granddaughter would run into it. In about 15 minutes, I went from sad and disappointed to gleeful and belly laughing while we ran around the store, trying to find all the ugliest things possible. [Kiddies, the lesson here is: You know what? Shit happens. Deal with it. Quit yer whining and find the fun.] 

We proudly returned to the house and presented it to the kids, who were great sports about joining in to our frivolity. One of my most wonderful Christmas memories this year was having Autumn "help" put up the lights.

 (Not only is she beautiful, smart, and brave, but she's helpful, too!)

And my kids and I put as many of our ornaments as we could on this little sucker. Katherine encouraged everyone by saying, "It's easy! I'm not even hanging them! I'm just shoving them in there!" It was ugly, but in an ugly-cute kind of way.

Sort of like pugs <ducking and running from all my friends who have pugs> Hey, I've been known to describe our Tess the same way. Our Baja mutt is pretty ugly-cute. No shame in that game!

Here's a "cutie", Tess, named for Tesla Road, where our winery is located.

Later in the week, the sun really came out. And there were lovely views to be seen. I was lying on the sofa, spooning with Schmoopy and watching a movie, and I turned around and looked out the window at the bright light shining in the sky. I debated for a few minutes about interrupting that time and suggesting we go out and go to the beach to enjoy the vistas. But I felt his legs pressed against the back of my legs, his arm wrapped around me, the warmth from the fireplace, and the ugly Cousin It Christmas tree adding to beauty of the moment. And I decided: Nope. This is just perfect. 

I hope you had as perfect a holiday season as we did. And Happy New Year! One more chemo cycle this month, and then we start the "watch-and-wait" phase. Not easy for Type A personality, but my plan is to not just wait, but live life and look for the fun. That sounds like a plan to me!

The One in Which I Tell You that I'm not Stable

Not so much "Yippee Skippee" this time. 

Okay, I know many of you know that I had my MRI on Monday, I still haven't posted any results. I usually post a cheery update saying "I'm stable! Yippee Skippee!", so you may have already gotten the gist that...the scan was not stable. Well, let me be more specific. Tuesday morning, we heard from my oncologist - My MRI scan this week showed a change from the last one that I had in July. Just a reminder, in this case: NO change is good. Change is not good. So, I spent a great deal of time trying not to freak out. I meditated and walked with Steven and tried not to cry TOO much...because we really didn't know very much yet. (P.S. Still don't) The oncologist was just reading the report that he got from Good Sam's radiology department. He hadn't seen the scan itself yet. All he really said was there was "a change".

In the late afternoon, we heard from our radiologist (Dr. Rad) - same thing. Hadn't seen the scan itself, but from the report, he was more reassuring and told us a little more information based on that report. Through speaker phone, Steven and I both peppered him with questions, and he used words like, "minor", "subtle", and "very mild" flare/inflammation at the tumor site. What made me feel the most reassured is he said: "By no means, is this definitely a recurrence of the tumor". No, I'm not paraphrasing. That's exactly what he said. I know because I wrote it down. (More about that later below)

I can't tell you how reassuring all those words were. I felt like I could breathe again.

We still have a lot of meetings and research to do, but for now, I "stay the course". I will continue the Temodar cycles and have an MRI every other month. We have appointments with both the Los Gatos oncologist and the neuro-oncologist at UCSF next week. We are considering seeking yet another doctor for opinions. It can't hurt, right?

What we know now, is this: The radiologist said the slight inflammation may be "radiation necrosis", which sounds really spooky and Halloweeny, so I guess we can look at it as timely and festive? <cue spooky noises and music>

I know radiation necrosis isn't something to joke about, but it's better than a recurrence. And P.S. Piss off if you don't find the same things funny that I do. If you haven't figured it out yet, I have a weird(-ish) sense of humor.

Just kidding!

What seemed a little eerie - is that, (I kid you not), I woke up Tuesday and was randomly thinking of how lucky I am - considering the circumstances. I am relatively unimpaired RIGHT NOW from my illness. And you all know how I feel about the RIGHT NOW.

It is what matters. RIGHT NOW.

I can walk unimpaired and without support.In fact, I just started doing this 30-day Yoga Challenge with Adrienne on Youtube, and I am kicking ass - or is she kicking my ass? Either way, I'm doing downward dogs and cobras, and planks to beat the band. 

I'm not physically disabled right now.

 I can talk relatively unimpaired, although, I have some issues with that (especially when I'm tired or just waking up). But most of the time... the important thing is that I can still communicate my thoughts and feelings. And, not to brag or anything, but my mind is still pretty sharp.

Yes, there are some differences. My short term memory is pretty shitty. But I've learned to adapt. I carry notebooks. (Surprisingly, despite my love of technology, I like the ole' paper and pen to jot down things that I need to remember. I call it my "paper brain". So, if you tell me something you want me to remember, and I don't write it down, I have no intention of remembering it. Whoops! I gave away a little secret! (Shhhh! maybe some of you didn't catch on....) <slinking away>

Nothing to see here! Move along!

Okay, as I think about it, all these thoughts were really not "random". I was trying to keep my perspective while I waited for the news about my MRI. And guess what! That is all true today. After hearing the news. The fact that the scan was not "stable" didn't change that.

Yes. It threw us for a loop, and Steven and I needed some time to process it. But if we stay in the present and not start projecting into the future, we are more than okay. We are lucky.

But....but....I could leave at that, and wrap this up in a big bow, but I feel like I need to share with you....

 In a cosmic joke of some kind (P.S. Cosmos, I don't think it's funny AT ALL, and if you could knock it off, that would be GREAT!), we are having some other challenges as a family that my sister-in-love and husband are dealing with right now. The cliche says, "When it rains, it pours..." I know we have a serious drought here in California, but if you could manage to have some drops land on another family, we would be so grateful. Thanks! (I think Steven and his sister have already proven that they're studs. No need to make people jealous.)

The Studs! Look! They even have weapons! Look out!

I had to scrounge around in my Ninja Warrior toolkit and find my Zen Manual. It's a little dog-eared, and I'm flipping through it like mad. Yes, I'm soaking up the message: Worrying never changes the outcome. 

But this time, I'm also focusing on another message: Together, we have so much more strength.
My love goes out to all my Warriors and Angels, and I send my love and positivity to my family. We are so strong. We will get through this!

Okay, so technically Pam & Steven aren't twins, but they are AWESOME!

Love, June Xoxoxo #MFBCFNW

The One in Which I Talk About Nuclear Families and Nuclei

I was brought up by parents who have instilled in me the value of "La Familia". (Nevermind that I'm 3/4 Polish and have not a smidgen of  Spanish) in me ...the phrase captures the feeling perfectly. It's more than "the family". It's The Family is Everything.)

Growing up, my family was all from the East Coast. In fact, when I was choosing a college, my parents gave me one constraint: nothing west of the Mississippi. They were afraid that I would meet someone from far away and end up moving, separating the family. I ended up at The George Washington University (yes, the THE is part of the name - Google that shit!) in D.C., so I did abide by that rule. The wrench in their plan was that Steven, from San Jose, California, was also attending GWU. In fact, we were living a couple doors down from each other in the freshmen dorms. Ah, we try to control our kids, but in the end...

We married in 1990, and in 1992, we moved to California "for a couple years" in order for his family to get to know us and our growing family. (That made sense to me because I thought, "Why should my family have easy access to the family, and Steven's be so far away?) It turns out, we can't control our parents or siblings very well either, because eventually Steven's sister & her family moved to Portland, Oregon (where his family lives), his father and step-mom built a home in Baja and spent about 9 months out of the year there, and his mom moved to Arizona. In the midst of all this, Steven began working in the wine business, so "a couple of years" in California has turned into the rest of our lives.

I give my parents so much credit for their determination to remain connected with us - especially their grandkids - despite the 3,000 miles distance between us. My 75 year old father still works full-time - Loves it! -  and travel has always been a part of it. They tie trips in with family visits and use airline miles to stay connected. When the kids were younger, my mom would buy duplicate children's novels to "read with" April on the phone. (Kiddies, this was all before Skype, y'all!) They still move heaven and earth to gather their children - and grandchildren when it works together as much as possible. The hiking trip (stay tuned for more about that!) is part of that. Oh, and Katherine & Aidan are off to Italy (for the 2nd time) in Sept./Oct. with Nana and Grandpa! So cool!

I wrote a whole blog already about my hiking trip with "Ma Familia" in New Hampshire last week, but I felt compelled to write about this first. We were sitting on the patio, and I was discussing how I was having difficulty adjusting to an obvious transition in our family. April is married with a husband and baby. She has her own new Familia, and that is her priority - and rightly so. Aidan and Katherine are infected by wanderlust and keep talking about living abroad, at least for a little while. Katherine already spent a semester in Spain while at UC Santa Barbara. Thank goodness for Skype!

In the middle of this conversation, I looked across the table at my mother, and we held our gaze as everyone chattered around us about the subject. Silently, she was saying to me, "See? See how hard it is to have your children go away?" I got it before, but now I really GET IT, if you know what I mean?

I get it now, Mom!

People talk about "nuclear families, but how does that take into account that cells divide, and there are more than nuclei? In the olden days, people continued to live close to their original nuclear family. FYI, My maternal grandmother was devastated when my father moved our family from NY to NJ because of his job.  We used to go to dinner at her apartment in Brooklyn on weekends, and she would load us with that blue tin of Danish butter cookies for the "long drive home". To this day, those tins make me think of her and those drives.  

Heaven forbid we should get hungry on the "long journey" home and resort to Donner Party-esque behavior!

My parents didn't forgive Steven for "taking the family away" until he earned his stripes through this challenging time we are going through right now. Being so far away, they've had to trust him to take care of me the way they would. I think that being a caregiver is a #freepass to La Familia, don't you?

For Steven and me, it's a New World, and we're still just trying to figure it out. We talked about this on our walk yesterday. We resolved to go on scheduling family traditional time, and whoever can come on any given day/year, we'll be blessed to see them. (Except Thanksgiving. EVERYONE must be there for Thanksgiving. (It's the first rule of La Familia, kind of like the Fight Club only different...)

Thanksgiving 2014

I've spent a lot of time recently thinking about the legacy Steven & I will leave behind when we are gone (whenever that may be). I hope that is at least one of them that we've passed down to our children. April was the one that made the rule that the siblings couldn't go to college more than 2 hours away.(Katherine cheated a little by saying, theoretically, one could fly to Santa Barbara in under an hour.)  This month we'll meet her halfway in between San Jose and Santa Barbara. A new world calls for adaptation and ingenuity, right? She's bringing her boyfriend. Hmmmm....we've yet to hear where he's from....or what he knows about La Familia....

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 Feel Blessed to Meet my Granddaughter

5-1/2 months ago, I was diagnosed with gioblastoma multiforme. I couldn't even pronounce it or spell it, let alone tell you what it was! The hardest part in the first few days was having to tell our children about the dx. I don't remember much of the dark, early days - but I do remember sitting on the sofa, along side of my oldest, April, and failing miserably at "holding it together". After Steven explained the situation and what it meant, I leaned into her shoulder and choked out, "I'm gonna fight this. I'm gonna fight this so hard, so I can see your baby..." And she whispered, "Of course...I know..." Thank you for believing in me, April.

At the time, it seemed so far away...and I know for some people diagnosed with GBM, 5 months is a pipe dream. And yes, Autumn was my dreams that helped get me through the difficult times. I thought about Autumn Elizabeth to get me through my "custom fitting" of my radiation mask. I visualized her during my radiation sessions. I thought about Autumn Elizabeth during my MRI's...

And here she is - I made it to April's baby shower, and I'm still here for her birth! What a blessing!

Autumn Elizabeth, Day 3, Thinking some serious thoughts....

I put a cork board on my wall back in September. I pinned up Autumn's ultrasound picture, a brochure of our winemaker's cruise down the Seine (in April), and a picture of the UCSB graduation (Katherine graduates in June). At the time, those were the the events that I thought it reasonable to assume that I might still be here.  I also put a picture of the family at April & Coffey's wedding, representing all the "unofficial" opportunities I have to see the family.

I still get all squirrely and anxious when Steven gets too far ahead in the future. Maybe it's superstitious. Living with Cancer is a bizarre thing  -- for me, anyway. I want to remain hopeful, and yet I don't want to be too greedy. One day at a time, one week at a time, one month at a time...

Yes, I am a warrior, but I'm not fighting AGAINST something. I'm fighting FOR things. I'm a Mother Fuckin' Brain Cancer Fighting Ninja Warrior because I'm fighting for moments like holding my sweet granddaughter.

Cruising down the Seine with my Schmoopy  

http://winecruisegroup.com/wp-content/uploads/2014/07/Steven-Kent-Wine-Cruise-April-2.pdf

Katherine's graduation...

I'm going to keep fighting for these things as long as I can. 

And I hear a collective whisper,

"Of course...I know..."

Thank you for believing in me.

The One in Which I Distract Myself from My Scanxiety - and just try and CHILL OUT.

Tomorrow (Friday, 1/9/15) at 11:00 a.m., I will be stuffed into a metal and plastic tube - having high-tech stuff swirling around my head, clicking and whirring and knocking - scanning the New June's Brain. or June's New Brain? Whatever. You get the idea. The point is...I'm anxious, scared, freaked out...and not just because I'm claustrophobic.

You all know I'm claustrophobic, right? But ANYONE in that situation would be grateful for this beautiful, beautiful little white pill called Ativan that makes me able to even think about the situation now without breaking out in hives. (Okay, I cannot tell I lie: I just googled who invented Ativan. Three cheers to Stanley C. Bell! You rocked, Smartypants Scientist!)

Just looking at this picture makes my heart beat a little faster! GAH!

I suppose whoever invented the MRI machine deserves a lot of credit, too. Okayyyyy...So, I'll google it... Here ya' go:  Raymond Vahan Damadian. But I'm not cheering him without some Ativan in my system already. Sorry, Ray. I'm sure you were a super smartypants, too, but some people get the fuzzy end of the lollipop.

It will be my first post-initial treatment MRI. The results will then be forwarded to my "local team": radiologist and oncologist, as well as my UCSF team. I have an appointment on Monday, 1/12/14, with my oncologist to discuss the results. <gulp!> I know...We know that the first post-treatment MRI is a weird one. It will be only 4-5 weeks since my last radiation/chemo treatment, and I'm still tapering off my steroids. They expect things to look ...well, not normal.  Actually, come to think of it, my scans will never look "normal" again since I had a very "AbbyNormal" tumor up in there and with what they had to remove and zap and such, right?

But this MRI will (hopefully!) "just" be a new baseline, showing the effectiveness of my treatment as well as a new comparison point for all future scans.

But anyone who has/had cancer knows that feeling of SCANXIETY.  

[Confession: I'm suppressing the urge to break out into a song in Mel Brook's accent at this moment? I know I'm not alone. Why fight it?]

SCANXIETY is that feeling that overtakes us - I was going to say Cancer Warriors - but really anyone who has a chronic condition and needs to be monitored through scans to ensure there are no negative changes over time. It could be a recurrence, worsening of condition, or an entirely new bag of crap to deal with.  You know: everything we try not to think about in our every day lives, or it would make us crazy!

I'm trying to live my life these days - 90% of the time - focused on the HERE and NOW. Appreciating the present and letting go of those things that I can't control. But these MRI's - which will continue on pretty much forever in my future - bring up the WHAT IF's bubbling to the surface like a barrel full of corks floating in water. Try to push some down, and more just pop up somewhere else.

So....what am I going to do? I've already been online this morning, looking at cute pictures of animals - micro-pigs and hedgehogs, doggies, kitties, and of course....SQUIRRELS! (Hey, don't knock my hobbies! Haven't I already told you that the world needs less cynicism and more whimsy!)

Internet Lesson of the Day - Feel free to skip if you'd rather carry on with more serious talk.
Kiddies, I always try to teach you something useful, so here it is for today:  If you are willing to up your game from Pinterest, the real mother-lode of ridiculously cute animals is far and away reddit.com. They have whole subreddits devoted just to "Dogs Wearing Hats" and "Animals Being Derps".  But if you're a newbie... Quick Test: Do you know what a subreddit is? No?----> I suggest you start with the wildly popular and aptly named "Awww". And you can pin these on Pinterest and feel smug virtuous about contributing some semi-new content! Win-win!

This one is called: Kitten and Bunny Lookalikes.

Question from the audience: But June, how long will looking at adorable animals pictures really distract you?
Answer: Longer than you'd think...under normal circumstances. But with the scan a day away....not long enough, unfortunately.

It's not all about the scan, though. It's about the fact that we have to face the results of the scan and respond to them. We don't know yet what we're going to learn, but we are going to learn something. And we will have to make decisions based on that information. Which requires us to start actually looking at the WHAT IF's/THEN...scenarios, choices, options. So, Steven and I take deep breaths and start wading into the world of WHAT IF's with GBM patients.

So, how do we navigate this new, uncertain, scary time? How exactly am I supposed to CHILL OUT?!

Uh, oh! We've unlocked June's teacher-mode! Look out!

Let's reframe this situation, shall we? I may have many more MRI's in my future....which means a lot of more of these "Scanniversaries" and SCANXIETY ... as long as I have a FUTURE....

And that's very good news, indeed. Yes, it is!

 So, I need to associate Scanniversaries with LIFE instead of ANXIETY.

Got it? Got it.  

I'll keep working on it. Practice, practice, practice.

My new mantra:
Continuing MRI's = Continuing FUTURE

And I say that deserves a cheers to both Stanley C. Bell and Raymond Vahan Damadian!

Now, if we can just find the next Smartypants Scientist(s) to find a CURE for Cancer, 

I swear I'd throw the biggest party EVAH! 

With unlimited cheers! and drinks on the house! (Shhhhh! Don't tell Steven.)

You heard it here first!

______________________________________________________________________________

And now a BONUS TRACK!

Introducing: JUNE'S WARRIORS - SUPPORT page!

 

We are so grateful for the all the expressions of support, love, and encouragement that we've received from friends, family, and complete strangers around the world. We are humbled and overwhelmed by the response to our current challenge. From the messages and the cards, the meals dropped off, contributions of organic veggies, cozy blankets and toasty & cute hats...the list goes on and on...
all of it has meant so much to our family.

In addition, some of our communities have spontaneously organized fundraising opportunities for our family. We thank you so much for your big, big hearts and effort, and thank you to everyone who participates/donates!

One of the things about my condition is that it is chronic (I prefer chronic to terminal, don't you? Although John Cleese said, "Life is a terminal disease, and it's sexually transmitted.") ... and unpredictable. We are fortunate enough to have insurance, however, we just got news yesterday that my MRI will be the first thing applied to our annual deductible in January.  Wheeeee! Ka-ching! My monthly medication co-pays also add up. And the reality is that, "standard treatment" for GBM is very limited at this time. Down the road, we also may be looking at significant out-of-pocket expenses associated with clinical trials and seeking alternative/supplemental care. In other words, we most certainly need and appreciate all the support.

I've created a new page on this blog: JUNE'S WARRIORS - SUPPORT to acknowledge and keep you updated on all of June's Warriors efforts. It will include not just opportunities to support our family, but links to support the often overlooked cause of Brain Cancer.

If you are already planning to come to our event next Wednesday, January 14th @ the Vine- our family is very excited to see you all in person! If not, click on the June's Warriors page and find out more. It's going to be bitchin'!

NO ONE FIGHTS ALONE!

The One in Which I Describe the Family Holiday with "New Normal June"

Warning: I'm gonna write a lot and then reward you with some of the most adorable pictures you've ever seen. Trust me. It'll be worth it. Carry on! 
I've taken a full-week off from writing this blog - a deliberate decision to be "in the present" as much as possible and soak up the experience of being able to be with my whole family together at one of the my favorite place on earth...

Yes, well, obviously "The Beach".... (You don't get any points for knowing that. Sorry, Hermoine!)

But more specifically, Capitola, CA. This is the way you usually see it in brochures and stuff, but it's so much more than this.

The distinctive colorful view of Capitola Village

It's one of those places that you don't really even want to tell people about because then it will be even more crowded when you go.

Capitola is a mere 35 - 40 minute drive from our house in San Jose. I think it's a natural phenomenon that folks don't manage to go to their favorite local places nearly enough. But after my diagnosis and treatment in the last 3 months, my family rallied together and said, "What should we do for Christmas because we want to to do it together."

The planning involved not just my husband and my 4 children plus Son-in-Love, but my sister, Kathleen, (and her daughter's family), brother, John, (with his sig. other, Condee), and my father and mother.
Shout out: Mom & Dad were instrumental financially in making this grand gathering become a reality, and we are so very grateful! Airline tickets had to purchased and two full units had to be rented - one had to accommodate dogs! - and at peak, we were expecting 14 adults and 2 small children. And a partridge in a pear treeeeeeeee.....

The "Normal June" (which I shall begin to call the "Old Normal June") would have relished this task - full of moving parts, plans, and lists... Who will stay where? What extra supplies/beds will we need? Menus, grocery lists...it's a Type A's version of heaven, I guess.

But based on the physical impact of the last few weeks of my initial radiation/chemo treatment, it became clear that someone OTHER than me was going to have to handle the rental properties. I was not up to the challenge, and I had the good sense to say, "Please take charge of this!" - and so, Steven & John made that part happen in a flurry of internet and phone negotiations with the long-distance help of Mom & Dad, of course. Done.

As I recovered from my fatigue, I swung into Old Normal June-mode and started sending out emails with logistics, loose schedules, and menus. Google Docs were made and Evernote notes were tagged...and I thought I "was back" - I had this handled - with the help of Daughter April, who did a great job of updating things as plans solidified.

But the reality is, once we got there - things kept changing...with so many variables and people, my plans often were way off target. The good news - and it was really, really good news! - was that both Katherine and Sara were able to stay the whole time - which was not the plan in the beginning. The bad news is that every change meant I needed to adjust The Plan. And I got completely stressed out.

At the heart of it? Lack of control? Fear of disappointing the family because I couldn't handle it? Projecting in the future...fear that my New Normal June might not be up to the task anymore? Who is this New Normal June, and who invited her? Will she be sticking around, or is this a temporary thing???

Those of you that have been following my blog are probably staring at the screen right now slack-jawed - or yelling at me through it: "Have you learned nothing this past three months?" "What about all this poppycock about letting stuff go and knowing what really matters?

 I know. I know. I'm still a Ninja Warrior-in-Training, I guess. Or it's one of the things you never really master? I have no idea. All I know was...

About the fifth day, I had a little meltdown. Eyes turned toward me, asking what the plan was...when were we leaving for the next event. And I just broke down. And released the responsibility. I took control by saying, "I don't want to be in control. I CAN'T be in control." And it was really hard, and I cried, and then...you know what? The world didn't stop spinning. The family rallied, and everyone picked up the ball and ran with it.

Kiddies, I'm happy to say that this Ninja-in-Training was able to right her thinking and focus again on what really matters... And I don't need to tell you that when you do that...

The Magic Happens.

Like this:

FAMILY...2nd, 3rd and 4th Generation 

And family...2nd Generation Fremer Siblings

and family...1st and 2nd Generation Fremer Family

and Family...2nd and 3rd Generations - The Mirassou/Coffey Family (plus "the Bean")

The planned and posed moments were spectacular, 

but so were the unanticipated and unexpected gatherings. 

Maybe more so?

Daily walks along the water with Steven and the doggies - FYI: Capi (left) is named after Capitola

Tiger hat and beanie to keep our baldy heads warm in the morning chill

Goofy Brothers-in-law bonding

And...

Mom & Son swaying to '80's Pop music

Extra time with Sara thanks to coworkers covering holiday shifts...

Smiles and laughter and extra days with Katherine with April practicing her mommy skills!

Morning gatherings on the patio after our walks

Alone time with Seestor - who travelled for 2 days for basically a two day visit! 

Condee and one of the happiest boys you'll ever meet.

Matt & Dad - Multi-generational meetings and conversations

Siblings

and of course, Schmoopy Love!

Getting together the Family is work and complicated  - and yes, unpredictable, 

but there is no doubt that... it is worth it. 

Because it is MAGICAL. 

And just a thought from your in-house MFBCFNW-in-training: 

maybe the fact that it's not easy is part of what makes it magical?

The One in Which I Decide that Caregivers are Superheroes - and Steven needs a Name!

It's been a surprisingly challenging week, this week, the week after my initial treatment of chemo/radiation has ended. There was a certain comfort to knowing exactly what our schedule would be the past six weeks of treatment. We were in a routine, and, it felt like we were actively doing something to TREAT my condition. Now, I'm supposed to "rest and recover", gradually allowing my brain to heal from the ...let's face it - trauma that it's been through. All while I watch the world around me swirl into a frenzy of activity related to the holiday season. And trying NOT to project into the future and think about the possible results of my next MRI in January....

Add into the mix that I have had to slow down due to the fatigue of the final seven days of radiation "boosts" and the cumulative effects on my speech, timed perfectly with Steven's semi-regular issues with his ears/hearing. You see, his ears get all plugged up from time to time ... which are not that great anyway. I know wives say that their husbands claim they can't hear them, but Steven has actually been tested. And the results indicate that his ability to hear high and low sounds are fine, but the range of the regular human speaking voice is compromised in one of his ears. Doesn't that sounds like a SUPER combination with someone who is experiencing speech challenges and has to repeat herself anyway to be understood?! 

Let's just say that there have been a few moments of .... "frustration" and leave it at that. Okay, I may have been a  little snippy with Steven this week at times when he asked me to repeat myself. But damn it! He's never snapped back! I would say that he has the patience of Job, but then I would feel compelled to Google that shit and fill you in on the origin....

 But I can confidently say (without any further research) that he has much more patience than Steve Jobs had - and I think all of us can agree on that without even having to look it up on the interwebs, or read/watch one of his many biographies.  (And I don't even have to throw my Apple employee friends under the bus on this one. You're welcome.) I'm not a hater. I'm just saying that's not one of his "defining characteristics", shall we say?

But I'm not talking about Steve Jobs. 

I'm talking about Steven Mirassou. 

My Schmoopy. 

My Rock. 

and now my Caregiver.

"Caregiver" - that's the term that's widely used to describe the friend or family designee who is primarily responsible for the patient in cases of serious illness. It's a term that seems so inadequate. Today, I simply want to honor him and all the caregivers out there, who took on or are taking on that role of caring for a critically ill family member/friend. This is my attempt, in some small way, to public acknowledge and express my gratitude, knowing in my heart and soul that I will fail miserably at meeting the depth and breadth deserved.

Almost immediately after my prognosis, I identified myself as a Ninja Warrior. It embodied the strength, power, and agility I thought I'd need to begin and continue this fight. And it's served me well so far.

But I've thought long and hard about how to identify Steven - and other caregivers. There is a certain symmetry to calling them Samurai, but I don't think that quite matches...and I don't want to be lazy. Certainly, the Samurai role was to serve another, and they were badass warriors. And they had to do so more honorably and with far more constraints than a ninja warrior (no #freepasses). But, at least for centuries of history, Samurai were chosen from the upper echelon and drafted into those positions as public servants. (Kiddies, if you're actually interested in a long, drawn-out history of samurais..you know what to do!)

Plus, the samurai uniform isn't nearly as a cool as the ninja warrior, no?

Ninja vs. Samurai uniform - It isn't even a contest! Come on, now!

But, the real problem is that the Samurai title doesn't really capture this: CHOICE. 
I'd be willing to bet that all the caregivers out there would say that they had/have no choice. They would say, "Of course, I have to do all the difficult tasks that I have in front of me." But that is simply not true. They volunteer for that role and can duck out at any point. And that's part of the specialness of any caregiver - that they see no choice when others do. They CHOOSE to stay and slog through the hardest shit, keeping it together... Many times - MOST times - trying to continue to do whatever it is that they were doing before and adding on probably 99% of the things that their "charge" used to be able to contribute (at least in the beginning)...

And I'm talking mentally, physically, spiritually, financially...in too many ways to imagine.

It's exhausting even to think about it.

So, what do you call someone who sees someone else in pain, in need of support...and it's clear that it's not a one time deal - that they are making a committment...and they rush in instead of back away? What do you call someone who agrees to step in, stand side-by-side, through it all, no matter what?

Isn't that the definition of a hero? ....or is it a superhero? (Now THAT'S something that's worth googling.) Okay, here goes...according to Cambridge Dictionaries Online:

hero
: a person admired for bravery, great achievements, or good qualities

superhero
: a character in stories or movies who has special powers, such as the ability to fly, that are used for fighting evil or helping people
: is also a person whose actions or achievements are far greater than what people expect

 Hmmmm...both would work nicely in this situation, wouldn't they? But I'm going with SUPERHERO!  Because caregivers definitely have special powers in my book. and they definitely rise above in their actions and achievements far greater than what people have any right to expect.

Plus...Superheros get cool pseudonyms. If I get to call myself a Mother Fuckin Brain Cancer Fighting Ninja Warrior (#mfbcfnw), then Steven HAS to have at least an equally badass and cool name ...and hashtag! DUH!

Let's see....

• Super Schmoopy is TRUE, but doesn't sound badass enough.
• Bald Hottie is also TRUE, but that's just a superficial observation, isn't it?

I think I need your help! Submit your suggestions in the comments below or Facebook, Twitter, email, or text them to me, we'll put it to a vote. Together, we'll come up with the perfect Super Hero name and hashtag for my Rock, my Schmoopy, my Caregiver! Submission deadline: Sunday, Dec. 21st!!!

P.S. Wine Man has already been used...(Halloween 2010) - Sorry, Schmoopy, but it was too good to pass up!

 Special love and admiration going out there to all the Caregivers/Superheroes out there today and everyday! 

P.S. Sorry for being so snippy this week, Steven! 

You are my Love and my Light and my own personal Superhero 

(even when you're deaf as a doorknob).