The One in Which I Ask What You Would Do

I think Steven and I are still ..."adapting' to the news we got that I had a recurrence in my brain cancer. It's "easier" now that we've made a decision about which option of treatment we'll be pursuing. Or I should say have already begun pursuing. On Wednesday, we received a calendar with all my appointments that have already been set up with UCSF for the next few months. It's reassuring in a way - for a Type A personality especially - to know what is expected on our schedule. But we're still in the very beginning and have no idea if this new protocol will have an effect on the progression of my disease at my secondary site. We are on Cycle One of a 28 day cycle. Day 15, I have a fasting blood draw, then a Neuro-oncologist appointment. If the numbers from my blood draw are okay, I have my "infusion. After six cycles like this, I will just be having the Infusion Days and no Chemo Days. (I think that's right. Sometimes it's hard to keep all the details straight.)

I've already joked about this on Facebook, but I'm only partly joking. I didn't know exactly what the Infusion was going to be like, exactly...but now I know that is NOTHING like a spa treatment (and if it's on the menu of any spa you visit, DON'T choose it!), and there are no tropical drinks included with little umbrellas and the scent of pineapple or coconut - or lime, even... <rip off!>

Hey, I thought you said "cocktail"!?!?!

It's basically a drug being "infused" through an I.V. tube into my blood stream. I'm so used to being poked with needles, I know which arm is the better one with the preferred vein. (Anyone who has had/has a condition that requires a lot of blood labs, etc. is nodding his head in understanding right now.) That day, I begin my 5 day chemo cycle - pill form - at bedtime. At first, I thought, "No big deal...no real nausea with the help of Zofran and the magical MM, etc" and the most reported side effect from this other drug is eye irritation. I felt okay. Meh. Not too bad

The next day; however...I've never experienced anything like that. I've been "tired" before - really, really tired before along the way of this 16 months of initial treatment. But with this new "cocktail", I felt like someone had injected some kind of heavy metal into my bloodstream. Maybe it was like Ironman? But truth be told, I've never gotten into that franchise, so I don't think he's as lethargic and lame as I felt at that point. If I'm totally misrepresenting that character....#freepass #braincancer

What I'm trying to describe is that It required tremendous effort just to sit up or lift an arm or leg. And it wasn't like sleepy, like I had experienced before. The usual prescription for my chemo side effects were not helpful - lots of napping and binge watching on Netflix and Amazon Prime. So, I lay there like a lump. I think I was a lump. A lump o' June. Not feeling very Ninja-like at all.

Picture Ironman all rusted and creaking out: "Oil caaaaan....."  like the Tin Man of the Wizard of Oz. NOT like the Ironman triathlon endurance competitors. Does that clear that up?

Let's just say that it was not fun. That pretty much covers it all.

My clinical trial calls for a second infusion on Day 15 - which will be tomorrow, Monday, February 22nd. Without a chemo pill chaser. So....who knows what I await! Like Cracker Jacks! OOOOH, a surprise in every box! Not as tasty, but the prizes in the box now are just stupid. right?

I've not broached this subject on this blog much, but anyone in a situation like this - not just the patient, but the whole family - inevitably has conversations about "quality of life" versus "quantity of life".

Steven have had several deep discussions on our daily walks lately. And it brought me back to something I thought from the beginning with my diagnosis. That was the birth of The #mfbcfnw! Raawwwwrrrr! I don't remember much about the first few days home from the hospital after my craniotomy, but I do remember sitting on my sofa, with my oldest, April, sitting next me. She was noticeably pregnant (due in March '15). There aren't really words to say to your child in that kind of situation. but I remember saying, "I'll fight this as hard as I can. I want to be there to see your baby...." <sobbing, of course>

This what makes this situation right now particularly fucked up to me. Because I DID fight and fight and fight. And Mother fuckers, I have survived for ...almost 17 months beyond my diagnosis! I'm planning on attending Autumn's first birthday in March! Wooooot! I'm feeling a little Ninja-ish right now!

But I'll admit, when I first heard the news about the new growth in the secondary spot, I was a mess. Lots of sobbing and shell-shocked, really. And in my head, I was thinking,  Am I going to be like aRusted Ironman the rest of my life? Where's my Mother Fuckin' Brain Cancer Fighting Ninja Warrior?

I kept thinking over and over...."I really thought I'd bought myself some time."
An interesting twist of words. "bought myself some time". Well, my doctors would say, Yes, you have. You did everything you could do. This disease is just a GINORMOUS MOTHER FUCKER. <(---I think that I added that last bit.) But I'll continue to do that which I can control over to try to give myself a few more weeks, months, or years with my family and friends. I will juice and drink combinations of kale/spinach/cabbage/romaine....(it's not as bad as you think - REALLY!) I'll continue to walk every day that is feasible - except my Ironman days (if I should have more of them)

And my brain-cancery mind has thinking about it...what would YOU do to "buy yourself a little more time"? And the thing, we ALL have evidence before us that tells that we CAN. No, there's no money-back guarantees, but why do we all ignore so much scientific evidence that we're shown that if we do X-Y-Z, that it helps us to prevent certain illness or medical condition that decreases our quality of life. And yet...and yet...

we don't do those things.

Kiddies, I'm not pointing fingers, and I'm not counting myself out of this phenomenon. 

Yes, death can be completely random. You could go out today and just get hit by a bus. Boom. No warning. But would you step off the curb onto a street without looking both ways if something was coming in your direction? I'm talking about a little itty bitty change that could contribute to preventative steps.

I really don't want to have this feel like a lecture. It's not meant to be lecture. Like I said, I've just been having this stuff bouncing around in my mind.

If there was ONE THING that I could leave behind today is to have you think about your life and what you are doing now. What you value. What you would lose if you were tragically diagnosed with a terminal illness. What would you do to "buy yourself more time"? My answer right now? Almost anything. To see my granddaughter's second birthday? To be there when one of my other children got engaged and went to a wedding attire shop to pick out their outfit...and I could be there? OR watch them walk down the aisle...graduate from college or earn a masters degree...

Or the smallest, smallest  things.... I was doing laundry this morning, and I was hanging up one of Steven's shirts. It's one that he has a tough time getting the collar "just so" over his tie, and he always asks me to fix the back of the collar to cover the tie. And as I hung that shirt, I thought. What if I don't ever get to do that again?  I'm not making this up. This went through my brain cancery mind this morning. 

So, yea. You can be sure that this #MFBCFNW is still fighting. RAAAAAAWWWWRRRR! 

No gratuitous picture of my granddaughter because I'm headed out to see her in a little while, and I'll take plenty of pictures then! So, come back later to see it! 

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

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

This week has been a DOOZIE!

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

The One in Which I Hope Winter is Coming

No, I'm not talking about the very popular series Game of Thrones. I watched a couple of seasons, but my very wise son and I had a conversation a while back about how he stopped watching those kinds of shows because he didn't want those violent images in his head. I thought about it, and I agreed. I don't need those kinds of gruesome thoughts in my head. So, when I say, "I hope winter is coming." I'm not referring to THAT winter..

I'm talking about the seasons-seasons. You know, like spring, summer, fall, and winter. (and NO, they're not capitalized in this situation. I googled that shit, you fellow grammar geeks!)

Now, I am straight up going to warn you that I'm not going to write anything in this post that's terribly orginal. #sorrynotsorry Writers have been using seasons as an analogy for life ...well, probably forever. If we could interpret all the petrolglyphs on the rocks, we would most likely read messages about seasons being an analogy for life.

But I have something to say about it; I have my own voice, ...and most importantly, you can't stop me. So, neener, neener, neener! 

I'm going to put my mom on blast for a second, but I'm also going to turn the lens around and look at myself,, so I hope she doesn't take offense.

But just in case: I love you, Mom! <smooches!>

I have two siblings, and despite our very different personalities and lifestyles, we love being together. And when we get together, we tend to be loud and raucous, and we think we're hilarious. At least we laugh A LOT. My mom often seems to get frustrated because she can't get a word in edgewise as we riff off of each other. After all, we are from the same generation - have the same cultural references - and have had a lot of the same expeiences since birth. I've often said that my mother wants to have all the family together, but once she gets her wish, she seems like..."be careful what you wish for..." Most of the time, I think she is better one-on-one with each of us because she can really TALK instead of listening to us. P.S. I don't think we're as hilarious as we may think we are. <gasp!> No! That can't be, can it?

My siblings: brother John, sister, Kathleen/Kathy/Kate, and me (I'm easy to pick out. I'm the one with blue hair and brain cancer) - Summer 2015

I have experienced the same thing with our four children. They are seven years apart, oldest to youngest, but when you get into your 20's, that gap doesn't seem like that big. And our kids are very close. They've got each other's back and communicate regularly. Just like my siblings and I, they are really different in personalities and lifestyle, but they have such love for each other!

Aidan, Katherine, April, and Sara - Daou Winery, Summer 2015

We recently went wine tasting at Daou Winery in Paso Robles. We were looking for a place to meet halfway between Santa Barbara, where Katherine is living right now, and the Bay Area, where the rest of us are . Sara recently turned 21, so we can all go wine tasting <eh hem!> LEGALLY, I should add. But once we got around this big table, (just as usually happens when we get together as a family) the kids are very loud and raucous...and yes, they really are hilarious.  I was trying to participate in the conversation, but ...wouldn't you know it! I couldn't get a word in edgewise! And I was growing more frustrated. I kept opening my mouth to speak, but one of the children or another was hopping in to say something. This has happened before in similar situations. In fact, it happened one time when I was with my mother, and she looked across the table at me as if to say, "See. See what I feel like." We spoke about it later, and we agreed that we felt ...."marginalized" at those times.

But then I had this moment of clarity at Daou. It wasn't my turn. It was their turn. I don't mean this in a deragatory way at all. I sat back and watched and listened and enjoyed every minute of it. (Except when I snuck away with my granddaughter, Autumn, and went for a walk with her in a sling and talked to her about all the pretty flowers on the property. She had a lot of very insightful things to say.)

Yep! Grandma June using a sling like a boss!

Watching my children - so different and yet so close and funny and enjoying the whole experience of being together - I was bursting with pride and feeling all warm and fuzzy inside. And I know Steven was, too. We talked about it on our way home.

Or more accurately: WE made "dis". Okay, if we're going to be truly accurate, we made four of dese...I mean, "these"

I've been thinking a lot about that experience, and realized there's a time for everyone. I wasn't being "marginalized" that day. There are no margins unless you limit the space you can occupy. I was in a different space - not in the margins - just like Autumn.

Autumn (despite her name! haha!) is in the beginning of her life - the spring. When you first see the signs of life. She is blooming and growing so quickly. Every day, we see something new and different. It's almost hard to keep up.

Could she be any cuter??? (Pssst! The only acceptable answer is "NO, she's the cutest thing EVER!")

When she gets a bit older, she will be in Summer. Bright and full of promise,  children grow into adults - first, with little responsibility, but getting stronger through nurturing and their own determination. There are so many variables, who knows now how she'll "turn out"?

Our kids are in the summers of their lives. Doesn't everyone like summer? Summer is awesome! Full of possibilities, and yet, sometimes it can seem stressful because we are trying to cram so much into that time. School, relationships, maybe travel...marriage and babies (not necessarily in that order)...It's intense and chaotic but as much fun as it can be...

Steven and I are in the fall of our lives. Transitions through our lives are usually gradual and sometimes we turn around and say, "Huh. When did that happen?" There's no definitive line. I took this picture in the vineyard the other day while walking with Steven because I thought that it represented a lot of what I was thinking. We have the leaves turning colors while the fruit hangs ripening. Some blocks are ready to be picked and begin the new season while others need more time to mature.

Without getting too hokey (#too late #don'tcare #stfu), we are seeing the fruits of our labor break away and change into the things they're meant to be. Some of it is our doing, but some of it has nothing to do with us. So many variables...

I think of our parents as being in the winters of their lives. Winter is usually less flashy. Sometimes it can look barren or colorless. Sometimes it's associated with death. But think about it: winter can be really long. And if you look closely, you see the beauty. The sun sparkling on the snow, or the cleansing rain, or the trees revealing intricate, gnarly branches that are obscured during the other seasons by the leaves. The water amd those branches are sources of life. And they're beautiful.

Think about the season of life you're in. Yes, it's natural to reflect on seasons past, but don't begrudge those that are there now. Or be fearful or resentful of where you are now or where you're going. Appreciate its own unique beauty.

I'm appreciating this time of life, but as my title says: I hope winter is coming for me eventually  because it looks pretty damn sweet to me.

And remember: you can only be marginalized if you limit the space that you occupy.

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 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 Incredibly Long Post in Which I Tell you About My Haircut - and possibly other things

My treatment officially start tomorrow. I have a "simulation session" today - which sounds like fun...like when pilots get to fly fake planes, but they are in no real danger of crashing?

I think it might not be so fun for me. But hey, if it's good enough for Scully, it's definitely good enough for my radiology technicians!

In preparation for the start of treatment, I had a few things on my to do list;
1) Get a flu shot. Done! (Please get this done! It doesn't just help you. It helps everyone around you whose health might be compromised.)
2) Eat as healthy as possible. Done! (Who knew that kale, carrots, ginger, and celery, etc. could taste so good in liquid form? Thank you again, Mom & Dad, for the awesome ninja juice juicer!)
3 ) Walk every day to be in kick-ass, ninja condition for the battle ahead. Done! (Oh, and thank you, Steven, for letting me hold your hand every day on our walks. It's mostly 'cause I love you, but also because my anti-seizure meds make me a little uncoordinated, and I'd hate to fall down and crack my head open on the concrete. Would that actually be ironic? I don't know. Damn you, Alanis Morisette! You've left us so confused!)

I had one thing left to do yesterday...

4) Get a shorter haircut. Because a) I'm going to lose patches of my hair from the radiation and I thought it would make the transition less traumatic. Besides, I may be able to do an elaborate comb-over. (The rest you are laughing, but there are men of "a certain age" that are nodding right along with me, thinking this is a GREAT idea!) and b) Dealing with the sheer amount of weight I had on my head was ridiculous. I still get a smile on my face thinking about whoever it was that had to deal with my hair going into my surgery. Don't get me wrong. I don't remember one iota of it.

But I woke up like this:

 

Pay no attention to the expression in my eyes. I was still very loopy from the meds they had me on. Focus on the fountain of hair that was sticking out of the top of that bandage. And some poor sap was responsible for dealing with that??? Can you just picture that conversation?

Nurse 1: Hey, you! Uh...how are we going to get this bandage around Rapunzel's head to wrap this wound? 

Nurse 2: Oh, shit! Just wrap it up and let it stick out the top. Maybe she'll get a haircut after she sees how ridiculous she looks! 

 [I'm assuming it was nurses since we KNOW that no doctor has to make decisions about what to do with the hair that is in the way and such. ]

I take that back...because they didn't shave my whole side of the head. Which they could have. Someone carefully shaved a neat corridor just along the incision line. And it's hardly noticeable with the poofball that is my hair. Now, that I think about it, that was probably nurses, too. So, give it up for the nurses at Good Sam Hospital! 

When I made the decision to get the haircut, I solicited recommendations on Facebook, and I got a great number of leads for a potential stylist who could deal with my tender head and my gnarly wound from the surgery. Only fucking Facebook sucks, and I had to spend at least one hour trying to find the fucking status update with all the comments that I POSTED in order to retrieve the information. Seriously. Facebook fails at life. I'm seriously considering telling Facebook to suck it and going with twitter (So, follow me on twitter if you like that sort of thing!)

And...we're back! Haircut...recommendations...I remember what i was saying...

I decided to go with Jennifer at All About Me Kids Salon. No, I'm not a kid...but it is all about me after all, isn't it? Rachael (Lavezzo) Sims Snedecor... recommended her and assured me that she had tons of experience with cancer patients. As it turns out, she cuts hair for a lot of autistic kids, so...if you're looking for a kind, gentle, otherworldly empathetic person to do some hair...look no further. And she does a fair number of adults, too. I was disappointed that I didn't sit in the race car, but I got over it quickly.

First, we took care of the snip-snip to cut off the 10" pony tail to donate to Locks of Love. It doesn't look like 10", but my hair is so curly!!!  Some kid with alopecia is going to score the jackpot! Not only is this hair curly, but it was once worn by a certified Kick-Ass Ninja Warrior! Hello?!?!

Then, Jennifer went to town cutting my hair. I had shown her some pictures of what I wanted, and she nailed it! and while she cut my hair, she was sooooo sweet and genuine and put me completely at ease. As chance would have it, her father has just finished his own radiation treatment for a head tumor. Only his was right behind his eye, so (if your squeemish, you might want to skip the next few sentences) in addition to the "mask of horror/torture" that I have got to wear, he also had to slide a metal plate under his eyelid...every fucking time. 

So, you won't hear me complaining about the mask because as the old cliche goes, "It could always be worse!" Shit. That just gets to me. A fucking metal plate on his eye. 

Fast forward and Jennifer has finished, and there were hugs and I'm convinced that she is something not of the earth. I can't thank you enough, Jennifer, for your generous spirit and time. 

All that I can do is this: when someone asks me, "Where did you get that cute, sassy haircut?" I can say, "Jennifer at All About Me Kids Salon!"

Just take a moment to scroll up to the post-surgery, drugged out version of me and compare to this last picture. This nothing short of miracle, no?

A Fair is a Carnival without Rides?

I think there is an official phase after everyone's cancer diagnosis where they turn into a two year old who has been told they have to take a nap and when they all wail, "But it's not faaaaaaiiiiir!"

[Side note: Ironically, that's one of the few perks of having cancer - naps are AWESOME - and everyone encourages you to take them. I never really appreciated naps before, but now, I'm their number one fan. Except for Jill. But I'm a close second.]

But about the whole "It's not fair" thing. It goes something like this:
Doctor: You have cancer.
Patient: But it's not faaaaiiirrr!!!
To his credit, the doctor doesn't pull out the old nugget: "a fair is a circus without rides"... or is it "a fair is a circus with a rides"???

Either way, I've never it thought made much sense because I'm pretty sure that I've been to circuses and fairs that both have rides. However, I think fairs don't have clowns, so that may be a more accurate statement. Although that wouldn't be relevant to the whole ""napping is unfair" business. But it might make so little sense that it would shock a two year old enough to quit whining, and say, "Wha'?!?!"

Besides, if you threatened to take them to a circus, that might get them to take a nap. Because a lot of people I know are really scared of clowns. Like, PHOBIC about it. (I googled that shit and the official word is: "coulrophobia")

And is it any wonder with pictures like THIS circulating around?

I'm not particularly phobic about clowns, but this is creepy, no? 

So, helpful little tip for our moms with young children out there. Instead of trying the "a fair is a circus without rides" ploy, you might want to try, "If you don't take a nap, I'm going to bring you to see the clown." Feel free to print out a copy of the picture for added emphasis

See! This isn't only a blog about a woman with brain cancer. It includes helpful little tidbits of parenting advice. You have my permission to share with all your Mommy & Me groups. Bonus!

Steven and I did go through a brief "It's not fair!" period. You start thinking of where you are in your life and how much you have left to accomplish, how much you would miss if you weren't there...I think it's a natural reaction.  Especially since it seemed like we'd hit a particular sweet spot in our lives. I had finally started working on the winery (which has been a dream of ours for so long!), our first grandchild is on the way, we're talking about FINALLY moving up to Livermore...and after 24 years of marriage, I've never been more in love of my Schmoopy/Bald Hotty as I am today.

But then I started thinking about the concept of "fair"...."Fair"? Really? And I could name hundreds...thousands...MILLIONS of deaths that were "unfair".  Let's just start with the holocaust, shall we? And we read about "unfair deaths" every day in the paper, see them on the t.v....babies and teenagers and young adults and couples with small children and older couples with grandbabies...
Is it really ever "fair" to remove them from the lives of all the other people that love them and want them to be around for really a long, long time?

"Fair" isn't the right word. The word I keep coming to is "random". It's so fucking random, who lives and who dies. We all know people who smoke like a chimney, drink like a fish, never exercise, and are in no danger of dying anytime soon..

or are they?

Sorry to be a such a bummer. But death is really random like that. Maybe they won't die of lung cancer, or psoriasis of the liver, or a heart attack, but they could die of...the FLU (notice that I didn't feed into the whole ebola hysteria?). or getting into a horrible car accident that they didn't even see coming. or getting pushed into the path of train/subway....or getting smothered by a clown in the forest (Hey, he was only trying to give you a hug!)...

because LIFE/DEATH is fucking random like that!

I read an article several days ago that stuck with me about the London Beer Flood that happened 200 years ago on October 17, 1814.  A  3-story tall vat of porter exploded from the pressure of the fermentation process and unleashed the weight of 570 tons of liquid, which ended up causing a chain reaction. The force of the explosion sent a wall tumbling down. Nobody died at the brewery, but eight people in adjoining tenements were killed...one of which was actually mourning the death of her two year old. You wanna talk about random??? You all want to join me in a collective, "What 'da fuck??!?!"

One of my wise friends said, soon after I revealed my diagnosis, that "the last I heard, we were never promised tomorrow." We only really have today - all of us. Not just someone with cancer. ALL. OF. US. So, get busy living it! Before you get murdered by a clown offering free hugs or are crushed by a tsunami of beer.  And for goodness sake, stop whining about what is "fair" and "not fair". Unless you're two and your mommy is talking about taking you to see The Clown.

The Fires of Mordor

Some people may be wondering why the hell I'm writing this blog. Contrary to what some of you may be thinking, I'm not an attention whore. However, Steven might be. The jury is still out. The whole "shaving the head" thing is a little suspicious.

Oh, shit. He probably just read that, huh?
<activate damage control> 
Love you, Schmoopy! No, YOU'RE Schmoopy! <3
 Phew! I think I'm safe.

I recognize and respect that some people approach the situation very differently. Every one has their own journey. Some people gain strength from turning inward and going to the stillest part of their soul. Silence and meditation.

Other people like...<eh hem> say.... me, need to channel all their personal resources into a big ball of fiery energy/rage/power and shout "RAWWWR!" from the rooftops. 

For me, it's like if I don't actively talk about and acknowledge this horrible thing that is happening to me...sorry... US...it still exists somewhere....I don't want to think about the deep, dark recesses of my mind that would glom onto those thoughts and how it would fester and bloom.

[Must. resist. making. Harry. Potter. references....]

Yesterday, I had the pleasure of having a long talk with a friend...a friend who is very private and wouldn't want for me "out" her, probably. So, I'll use a pseudonym. Let's call her, "Shmoozanne".  (See how slick I am? ) I met "Shmoozanne" at work when we had adjacent classrooms. Many, many afternoons, after school was dismissed, we would wander into each other's rooms and talk for about an hour (or more), successfully avoiding actually working. We would talk about family and friends and movies and ...well, LIFE. That's when I first realized how precious a friend she was.

I've said many times that getting to know her changed the way I thought about life. Whoa! But I mean it. For real.

(Steven, you're my witness! Unless you stopped reading after the whole "attention whore" comment. I swear, it was a JOKE! Did I mention that I've brain cancer? FREE PASS!)

You see, "Shmoozanne" is a Stage 4 breast cancer survivor...Nay, that's not enough. I would go so far as to say that she is a Mother Fuckin' Breast Cancer Fighting Ninja Warrior. She's about 100 pounds soaking wet - a wee little thing - but she's a mighty warrior. She's been to the fires of Mordor and back again. She's seen some shit.

(Hey, look at me go! I made another LOTR reference instead of Harry Potter! Go, Me!)

Long before I found out about my brain cancer dealio, "Shmoozanne" had a way of cutting through the bullshit and making me see the Big Picture. We lead similar lives: about the same age, with kids close to the same age, dogs, teaching and such.

One thing I had hoped that we wouldn't ever have to share was the whole cancer thing. But you know what? Yesterday, there were things that I was able to say to her that no one else could understand.
 [And I don't want to detract from what anyone else who supporting me.  I am so grateful for ALL OF YOUR LOVE and SUPPORT!!]

 But there are things that I'm sure only Frodo and Sam can talk about because they lived the shitty trip to Mordor. Here it comes...another movie reference. But I promise this will worth it...
 

Frodo: I can't do this, Sam.
Sam: I know. It's all wrong. By rights we shouldn't even be here. But we are. It's like in the great stories, Mr. Frodo. The ones that really mattered. Full of darkness and danger, they were. And sometimes you didn't want to know the end. Because how could the end be happy? How could the world go back to the way it was when so much bad had happened? But in the end, it's only a passing thing, this shadow. Even darkness must pass. A new day will come. And when the sun shines it will shine out the clearer. Those were the stories that stayed with you. That meant something, even if you were too small to understand why. But I think, Mr. Frodo, I do understand. I know now. Folk in those stories had lots of chances of turning back, only they didn't. They kept going. Because they were holding on to something.
Frodo: What are we holding onto, Sam?
Sam: That there's some good in this world, Mr. Frodo... and it's worth fighting for.

Booo- yah! Give it up for Sam and Frodo!

So, let me break it down for you:  in this analogy, Shmoozanne is kind of Sam. Only she is (slightly) taller than a hobbit. <giggle> (Sorry. Cheap short joke.) And I'm Frodo - except my feet are (slightly) less hairy. (Even cheaper hairy foot joke.)
Come on! You get the point!

Both of us know that IT'S WORTH FIGHTING FOR. And more importantly, what "it" is.

I've come full-circle - back to the whole "why I'm writing this blog" question. I know that it might sound nonsensical for a Ninja to be so loud and have a potty mouth. After all, aren't ninjas supposed to be super quiet and stealthy? But that's my Super Secret plan: I'm going to lull the enemy into thinking that I couldn't possibly a Ninja Warrior, distract him with some squirrels and hedgehogs and other ridiculously cute animals, throw out a bunch of film references, and when he least expects it ... I'm gonna open up a can of whoop ass on him!

Booo-fuckin'-yah!