The One in Which I Give Props to My Friend, HOPE

I'm playing my #cancercard liberally here as I find that my memory is declining a skoche <---(that's a real word that I learned from Steven, and I'd say to Google that Shit, but it took me some time just to find out how it really is spelled. What does it mean? How 'bout a smidgen?)  Anyway, my point is that sometimes I can't remember if I have already told some things to some people. I would be smashing as an Associate in the Department of the Redundancy Department, don't ya' think? (See, I think I already used that cheap joke sometime in a blog post here...#freepass. Hellooooooo! It's me. I have brain cancer. (#sorrynotsorry if I start an ear worm with Adele's latest breakout hit. Will you forgive me if I don't make another parody video and post on youtube? I thought so!)

Back to the point of all this. I know y'all or most of y'all know that I have been through a pretty shitty phase when I learned the MRI results showed disease progression. I wrote about it feeling like I had been punch in the stomach, but after some more processing, I think a better analogy is more like ...when someone a person (or dog) knocks you completely on your ass by running into your legs full-force. And at the moment, you have lost your ability to stand up, let alone walk away from where you are. After about a week or two of laying in bed and finding myself sobbing with what seemed to me like no new trigger. I was like stewing in a melange of sadness and anxiety.

I have been talking with a counselor pretty much since my diagnosis, and that's been super helpful. But my Self looked around at my crumpled tissues and lack of productivity for several days and declared, "We're gonna need a bigger boat." (Reference to scary movie of my day, Jaws. I've actually never seen the whole movie because I'm already afraid of sharks. True Story.) After some of this got really boring (and a little scary), I said, "Self? Self, I think you might be actually depressed. Self, I think you need more help."

As the first step, I reached out to my medical team and asked for a referral to a psychiatrist - very common for patients in my situation. Go figure! (Kiddies, I hear you saying "DUH!!" even if you're whispering it behind my back. I forgive you. You're right.)My new doctor prescribed a medication to help with my symptoms. Part of the problem wasn't just textbook "depression", but is insomnia because I couldn't stop my mind from spinning, thinking about what's going to happen next, and as you all know - that's a DANGER ZONE for someone in my situation. With the new meds? So far, so good.

I also said, 'Yo'! Self! You have an ginormous SUPPORT SYSTEM, and they are there to SUPPORT you. DUH! Reach out to someone! IDIOT!" This hit me while I sat in the CVS parking lot waiting while Steven picked up one of my many meds. So,  I picked up my phone and called one of my support system. I'll allow her anonymity - and say emphatically that just 'cause I did't call you, doesn't mean that I don't consider you part of my support system.

The person on the other end of this call...She is a fellow Warrior who battled Stage IV breast cancer. She had been where I am right now. We have the same sick gallows humor. BONUS! It sounded like we were talking a language that only we understood for the moment. She knew exactly what to say even though I blubbered in a way that she probably had NO IDEA what I had actually said. One thing that really popped like a bubble in my mind...she said, "You had a shitty, shitty week last week. Brush it aside and move on. You are starting a new week." Kiddies, if you are a caregiver for someone right now, take notes. Because that was magical. Acknowledgement and validation of my pain, fear, anxiety...wrapped in a big ball. And yet reminding me that you can move away from that. It can be different.

There I was, stuck in a hole, and she helped me out of that. Thank you, thank you, thank you Anonymous Warrior Friend! It reminds me of a TED talks video that my daughter once shared. It's a good one!

I've learned a huge lesson from this experience. I have so many lovely, supportive people in my life. Ask for help. Reach out for those hands . They want to help you through those hard times. So many people offered to help! But I'm used to being the helper, not the helpee. I guess I'm a slow learner.

Today is the best day I've had since that MRI Shock Day.  The worst part was that I've had a lingering feeling like I couldn't get back emotionally/mentally that I was before. The MFBCFNW. Where was the WARRIOR? Was she being a slacker? What was missing? Today I realized what I didn't feel: HOPE. Anyone slogging through these kinds of situations, has an old friend, HOPE.

Let me clarify this: I don't believe that having Hope when you diagnosed with a terminal illness is the same thing as Denial. Our old friend, HOPE, is the warm, reassuring friend that can embrace you when you need and say, "I'm here for you. I'll always be here for you." Today, I looked around and there was our old friend. It's like the personification of the positivity and love that my friends and family send to me through their thoughts and feeling. It flows to me and envelops me., embracing me with warm, reassuring arms, whispering, "I'm here. I"m always here for you. Don't forget that...No matter what anyone says, anything about statistics and odds and discussions about life spans...I'm here for you."

In my family , we have a tradition.(I think this comes from my maternal grandmother.) When someone is in a crappy situation, someone else might pat them on their head and say, "There, there." Sounds so simple, but in that small gesture and phrase you get: acknowledgement, validation, and the warm embrace of "I'm here for you."

I know it's complicated for someone who has never experienced the situation of being diagnosed with a terminal illness. I can't speak for everyone, but I will say for myself. I've been thinking a lot about what I really WANT so I can pass this along to you that are confused. If you want to help the ill continuing to feel HOPE, please don't act like their fate is a "done deal" - even if they are saying things like "I know I'm going to die..." Don't feed that part of their thinking. But the flipside is: don't say things like, "You've got this." or "You are going to beat this thing." I know, it's hard and counterintuitive. And again, I'm just speaking for mySELF, and I never said it all made sense.

So, what can you do or say?

• Hold them or pat them on the head and say:"There, there." or....
• "I'm here for you. I'll always be there for you."

It's very reassuring to know that our old friend, HOPE, is still there.

________________________________________________________________

Obligatory, gratuitous picture of my granddaughter, Autumn. She has been sick for over a week and still oh, so cutee!

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 Schmoopy & I go to the Happiest Place on Earth

Not long after I was dx'ed, had my surgery, and started to get the gist of my prognosis, I told Steven that we needed to start thinking of the things we wanted to do and DO THEM. You know the saying: "You better get busy living or get busy dying!"

I refuse to call it a "bucket list" because that implies that we are doing these things because we think I'm going to "kick the bucket" soon. (Where the hell did that saying come from? Hang on. I'm gonna Google that Shit!) Huh! Interesting! There's not a consensus. What?!You thought I was going to tell you? Geez-a-Louise! Don't be lazy. I've got better things to write about...

Like.... one of the things that popped into my mind pretty much right away when I thought about my "To Do List" (See! Doesn't that sound much less ominous than "Bucket List"?) was to go to Disneyland with Steven.

Spoiler! We went to Disneyland last week!

 I'm a big fan of Disney - yet, we'd only went once with the kids ... such a fun trip! They may feel a little deprived about that, but it was a deliberate decision to wait until they were old enough to really appreciate it. And we saw plenty of evidence this week of babies and toddlers being dragged around the park, crying and whining. I've decided that going to Disneyland with a baby is only a slightly better idea than going to Las Vegas with a baby. (Don't get me started on that...)

This time, The Planner in me came out (She's so annoying sometimes!), and I downloaded The Unofficial Guide to Disneyland 2015 and the app for my phone to check wait times for rides. I was sooooo prepared! Only my subconscious - or brain cancer - either one (You decide.) played a cosmic joke on me because in the last minute rush to pack the car for the airport, I LEFT MY PHONE AT HOME! Now, those of you who know me understand how bizarre this is. But it was such a blessing. It was really like I left The Planner at home, too, and I already said how annoying she can be. Plus, I think The Planner is becoming more and more unreliable. with the short term memory loss and stuff. (Sssssh! She might hear us, and we wouldn't want to hurt her feelings or anything...)

Honestly, I'm so glad I didn't have my phone there. I saw so many people looking through the lens of a phone or an ipad during the parade and fireworks, annoyed because people in front of them were blocking their shot. Put the damn thing down and watch it NOW! It's happening NOW! And who the hell is going to watch that video of the fireworks display later? It's not the same. You are in Disneyland! BE. IN. DISNEYLAND.

I confess that my phone is a very convenient, always available camera - so I have far fewer pictures than I normally would. My mom & dad gave me a Canon Rebel for a birthday present this month (Woot! Thank you!), but I am still learning how to use it. I stuck to "automatic" settings so that meant mostly daytime pictures outside. Part of that is because I'm not a scofflaw and when they say, "No flash photography", I listen! <eh hem!> ( You know who you are, Scofflaws!!!)

Waiting to explore the Pirates' Lair - Argh!

Ruh Roh! (I can hear my oldest daughter already saying, "You guys are such DORKS!"Yep! We let our Dork Flag fly freely!

Anyway, without the phone and the Planner, we were FREEEEEEEEEE!!!!! Free to just wing it! Well, not exactly because the brain cancer insisted on coming no matter what (BRAT! Way more annoying than The Planner), so we needed to make accommodations for it. What-ev. Life is about adaptation, isn't it?

And we're learning more and more about the BRAT and how to travel with it:
1) The BRAT gets tired, just like any toddler you would take to Disney. Except I can't take it out and put in a stroller, feed it treats, and yell at it when it has a meltdown - (which seems to be the strategy of many parents when their brats - I mean, sweet, lovely children  - have the expected meltdown in the mid-afternoon.) 2) The BRAT needs a lot of water. I mean, A LOT. We learned that keeping a close check on water intake was one key to success. 3) The BRAT needs to rest. And we need to listen to my body when it's saying, "Yo! Can we sit down a bit? Or go back to the hotel and lay by the pool and take a nappy, nappy? Thanks!" Finally, 4) My body needs calories to counteract the effects of the BRAT. I know that we walked a LOT. And we made sure we stopped and had a snack every hour or hour and 1/2. We even stopped at Whole Foods after we left the airport before we checked in to the hotel! Sure, we indulged in some off-program" food, but overall, we feel better when we eat better. (See, even though The Planner didn't make the trip, she left some helpful advice!)

The single best thing that we did was to suck it up and admit that I have a disability. The first day, we went into the City Hall and armed with a letter from my oncologist (which they didn't ask to see, FYI), I declared that I am battling brain cancer and the fatigue from my treatments (and probably the BRAT, too). So, I needed some accommodations. She checked to see if I needed a wheelchair (no), and then set me up with a program that allowed me to avoid those long lines. Thank you, Disney!  Anyone who has a disability knows that is a hard thing to do - to publicly declare that you aren't "normal" and can't do all the things that other people can do....that you used to do. But in the long run, it's better to just own it and focus on what you CAN do. It's way more fun. Trust me!

We rode about 3 - 4 rides each day and, the rest of the time just soaked in the ...well, I'll just say it, no matter how hokey it is.... the MAGIC of Disney. We all get to be children at Disneyland! And see the world through their eyes. Where else can I rock those ears with that bow?? The characters walk by and smile and wave. Princesses and Chip & Dale waved at ME...(or my general direction). I'm a big believer in whimsy, and

"Disney = Whimsy on Steroids." 

If Disney wants to use this as their new slogan, they're going to have to pay for it. <grin> That's gold, Baby, pure GOLD!

One of my favorite moments was when we were watching the new nighttime parade for the 60th Anniversary, and this little girl was right over Steven's shoulder yelling ...no...shrieking in his ear with excitement as she waved at each character on each float. "Ellllsssssaaaa! Elllsssaaaa! "Woooooodyyyyy!" Wooooooddddyyyyy!" Imagine wearing headphones and having that projected at full volume in your ears, and you'll begin to get the effect. (Note: this is probably way down on his list of favorite moments...) But she actually thought with all those lights and music and other shrieking children that Belle and Ariel and Mickey could hear HER. And in her heart, she went away with that memory.

My mom made me promise to go on "It's a Small World" and sing along.

Steven clearly loved that, too. <must be read in an extremely sarcastic voice>

I even made him continue another Fremer family tradition which is to pose next to a statue and imitate it as well as you can.

What do you think? How did he do? The guy on the right is way cuter than the guy on the left, though, don't you think?

He's such a good sport! And it was so fun surprising him with the picture from Splash Mountain. As we were about to go down the big dip, he said, "Put your hands up!" Little did he know that I had other plans...

I'm in the back, sneaking a kiss on his neck with my Minnie ears on.

I got to get a little something for Autumn Elizabeth to introduce her to The Magic, but I can't say what since I haven't given it to her yet. And I knew exactly what I wanted for my souvenir of this trip. I was so excited when Steven found it, I (almost) shrieked in his ear. With the Magic of Disney, I got to be a member of the Explorers' Club, too.

If you don't know the significance of this, that means that you've never seen "UP". And you need to stop what you're doing and  watch it - at least the first 10-15 minutes - RIGHT NOW! 

May we many more adventures together, Schmoopy!

The One in Which I Tell Y'all About the Relay for Life in Livermore

Team picture (actually at the end of the event) Theme: pajamas! Mine say: "Lazy Days, Ninja Nights" Rawwr!

Livermore Relay for Life, 2015

A few months back, Kate Gazzuolo (part of our SKW family) sent me an email asking if I was interested in joining their Relay for Life team benefiting the American Cancer Society this year. They've been doing it for about 5 years  - her immediate family and several members of the Steven Kent Winery Family. She totally understood if I was not up to it, but they wanted me to know that they had changed the team name in my honor from "Wine Girls" to "June's Wine Girl Ninja Warriors". (Have I mentioned how much the Steven Kent Winery Family ROCKS?  Probably not enough! Well, they ROCK!) I told her that I would love to join the team, raise some money, and play it by ear about how much I could actually walk on that day. Done deal! 

  

Katie Gazzuolo - Our Team Captain, and Cindy Turchino - Tasting Room Manager & Professional Pirate

I set up my page on the American Cancer Society website and solicited donations - and once again, family and friends - June's Warriors - humbled me with their generosity and support. <grabs tissues> [note to self: buy stock in Kleenex] Big Ninja Warrior kisses & hugs!!!

I had never participated in a Relay for Life event (I know many of those Warriors out there have - so forgive me if I bore you by describing some of the details - at least for this one.). The first thing I did was check in. If you are a Survivor (Yay, me!), you got a stick with a sign saying how long you've been a survivor. The two survivors in front of me said with confidence "37 years"...then "40 years". When it was my turn, the young girl who was volunteering to write on the signs looked expectantly at me. "um...9 months." She paused a moment, looked at the adult seated next to her for guidance - who sweetly just gave her a reassuring nod, a signal as if to say: "Well, write that down, honey!" I thought I was going to win a prize for being the least amount of time as I looked at the Survivor Signs around me, but then the beautiful Linda Santos and Sandy Casey showed up. Her sign said, "8 months". Dammit! I don't even win THAT prize? Well, as it turned out, neither of us would have won that prize (Kiddies -I'm totally making this up. There is NO prize for that distinction. I have to be honest.  I just don't want you to be bitterly disappointed if you ever go to one of these events and have just been diagnosed or something.) Anyway, we spotted a man with "7 months" a little later on. But many more inspiring signs with decades of survival!

I love Steven & Sandy's beauty pageant sashes for being Caregivers! At least Sandy has the pageant stance down!

The Relay isn't really a "relay" in the truest sense of the word. At least one person from the team has to be out on the track, walking laps, at all times for the 12 hours, but there's no baton passed or anything. We had some lovely volunteers that came by to help and walk some laps for us - Thank you so much!!! I even had a former student come up in the middle of the night to volunteer! I'm ...really speechless about this. But I could cry some more if I weren't out of tissues....We love you!!! and NEEDED you! 

Especially since some people on our team got involved in an hour or two of playing a "cornhole" game...which apparently means something completely different to most people than it did to me. I always called that game Beanbag Toss (throwing a beanbag into a hole in a board). "Cornhole"? Well...Google that Shit or use your imagination, but that is NOT what I thought that meant. Come on! I know I'm not the only one out there...There were themes for all the laps - which my team captain assured me was not necessary - but I am actually a lover of themes [Let's just say "hokey" has been used in a sentence about me more than once.] and chose ones that I wanted to participate in...especially the Super Hero one. Hello??? Who doesn't want to dress like a super hero? Apparently, 99.9% of the participants. But I wore my Ninja Warrior costume with pride!

That's right! Don't fuck with me, Cancer! 'Cause you don't know who you're dealing with! Ninjas are stealthy like that!

In addition to the funds we raised online, each booth had raffle items and other ways to make money. Our team had this beautiful basket with a wine tasting package of local wineries, as well as a table of used books.

Notice Steven in the background (look for the bald head), "working hard", reading one of the books he found on the table. That's alright. Caregivers deserve breaks for sure! Love you, Schmoopy!  Xoxoxo

The team also had a bunch of karate boards with CANCER written on them for people to karate chop CANCER.

Sharyn Bell, karate chopping Cancer's ass while Katie bravely holds the plank.

The other theme time that I really wanted to be a part of was the Luminarias. People decorate paper bags with names of treasured loved ones that have passed away or people currently Warriors living with Cancer. They light the bags along the track (with glow sticks) at dark and you walk along, reading the names and reflecting on how many people that Cancer has touched.  It's very powerful when you see them all lined up, each representing a father, brother, son, mother, sister, daughter...[You know what, Cancer? You suck! #sorrynotsorry]

Ninja Carol honored me with this luminaria. So sweet! 

 I had ordered my bag online for Jeannie Mullins - I didn't realize that we could decorate our own, so a volunteer did it ahead of time. It's a little sloppy, but Jeannie would understand...she taught 2nd graders, after all!
Thank you to my wonderful team/family for inviting us to be a part of this!
And our little but mighty team raised over $6,608!  The whole event raised: $136,458.98

Disclaimer: Almost all of the photos in this blog post have been stolen downloaded from someone else's Facebook page. Sharyn Bell, the Gazzuolo family, Cindy Turchino... thank you for being such good photographers and recording these precious moments. I have found that, since my diagnosis, I forget to take pictures because it distracts me from being IN THE MOMENT. Maybe it's the cancer. Maybe it's the sense of urgency to be present? Which is kind of the same thing, if I think about it...Whatever. I'm using my #cancercard to justify stealing other people's stuff. k? #freepass

The One in Which I Realized "I ain't got it."

This picture was taken on September 13, 2014. I already had a tumor in my noggin'. Isn't that freaky?

After I was diagnosed with GBM in September 2014 - after about two weeks of Steven and I feeling like we were adrift in a boat in the middle of the ocean -  we began to get our bearings. I began the process of recovering from my surgery, and we began to develop the plan for my initial treatments. In both the Los Gatos radiology department and at UCSF, they handed us a lot of papers and pamphlets offering resources to help us cope with the challenges ahead. I couldn't help noticing that Steven, as the caregiver, was being given a lot more more information than me --- ummm...excuuuuuuse me! I'm the one with brain cancer! I get it now. Being a caregiver to someone with such a serious illness is a grueling, relentless job.

In case you haven't gotten it yet, I have a pretty stubborn, Type A personality - in addition to having a potty mouth (BONUS!). It didn't take me long to get into that mode after the physical wounds started to heal. Tell me what I need to do, and I'm going to do it...to the nth degree. I was raised in a household in which Fremers didn't have headaches or stomach aches. (That's a true story. Ask anyone in my family.) I also inherited my father's analytical mind - break apart a problem, figure out the solution, and start plugging away. The more details you write down, the better, too! (Which actually turns out to be a good habit because one of my "cognitive deficits" is impairment of my short term memory - in other words, I suffer from CRS syndrome ....or Can't Remember Shit.)

I have my notebook for researching my Cancer and promising treatments. I have my notebook for planning my days purposefully to attend to my mind, body, and spirit - to do whatever I have control over to aid in my healing and survival. I usually seek support online when I need a community of like-minded people (shout out to my SAHMS - Woot! Stay at Home Moms whom I've known 21+ years), but the groups online for GBM are a major bummer filled with posts about "fallen warriors" and "angels who've gotten their wings". I respect their communities, and I know a lot of people get a lot out of it, but they leave me extremely depressed. Not helpful at all. I didn't pursue local support groups for the same reason.

For months, I was thinking, "I got this. I got this...." I am strong. I am brave. I'm a mother fuckin' brain cancer fighting ninja warrior!
but gradually, over the past few months, I've been feeling less and less certain. and more and more overwhelmed by my condition.

First of all, I can say without hesitation that my father was full of shit. #sorrynotsorry #freepass Fremers do, indeed, get headaches and stomach aches. Especially when they are receiving chemotherapy. Even the Queen of the Iron Stomachs. (If he wants to be a guest writer for this blog, I'm happy to give him the space to explain his side of the story. He is not ignorant nor stupid. This man has a PhD. and is still working full-time at 75 years old. He's not insensitive either. Maybe he's crazy? Just kidding, Dad! Love you! Xoxoxo! Near as I can tell, it was just to cut down on the whining of three young children over minor things.)

So, when I started to feel like maybe "I ain't got it!" it was a very unfamiliar feeling. And a very uncomfortable one, too. Maybe it was the gradual wearing down of my body and mind from the successive cycles of chemo? Maybe it's just....normal to have these swings in emotion when you have cancer. But I pulled out all the paperwork and made some phone calls and made appointments with a Social Worker and a Guided Imagery Facilitator. I met with the Social Worker on Monday. [By the way, I told her I owe her a whole box of tissues next time. I knew it was serious when she pulled her trash bin out from under her desk and handed it to me because I had too many used tissues to hold them anymore.]

I needed  - no, NEED help. Professional help. And I can't tell you how much it meant to just talk to someone about everything. From an objective and experienced perspective. One of the things that I remember her saying that helped a lot: (mostly because I felt like a stupid ass for not coming sooner) I said, "I thought I got this. You know?" She replied, "Well, you did have this. And then you didn't. And you asked for help, and you'll get back to feeling that way again." (She said a bunch of other reassuring and helpful things, too.)

And I stopped crying  (mostly) - and started smiling and laughing again. And it felt  - no, FEELS so good.

The One in Which I....Oh, shit! I forget! Ask Steven

I've talked a bit about my "cognitive deficits" as a result of my tumor and treatment. At first, it was really noticeable because I was having a little trouble actually articulating words. My tumor was on my motor strip, around where my mouth/lips, etc. are controlled, so that was not a surprise. I had a bit of mumbly-mouth, which is getting better and better.

What has become evident is that my short term memory is also affected. Like, you could give a small list of things to remember, wait 5 minutes while we talk, then ask me to repeat the list, and I will likely forget one or two of them. Thank goodness for paper and electronic devices to write things down so I don't always have to remember them, right?

One problem that has come up ...well, I'll just say it: I'm not always right anymore. (vis-a-vis Steven) Sometimes someone else will ask Steven and me a question like, "What day is..." or "How many people will..." At first I would confidently give my answer, and Steven would disagree. And THEN, to add insult to injury...he's right? (Wha?!?!)

I am only partly being a smartass. Really. I used to be the go-to girl with the right answer. Now, with my short term memory...I'd bet on Steven's answer (almost) every time.

Also, I also have lost easy access to some of my vocabulary. It's in there, but jumbled around. That can make my speech seem a little "off" in rhythm sometimes  as I search for the right word. I use the analogy of file folders. Each file folder has "stuff" (words/phrases/pictures) related to a certain subject. Some things you say over and over again, and they are pretty well glued to that file folder. Other words and phrases -  you don't use frequently. Maybe, you've only heard it, but never even said it.) So, imagine someone coming along and messing with your folders - giving them a good shake -  and words and phrases NOT glued down, float around, and settle ...somewhere! in my brain. Apparently my file folder labelled "curse words" is well-established and glued in tight. I have no trouble retrieving those mother fuckers. I am working on retrieving other words floating around in my brain and neatly putting them back in their folders for quick retrieval. This may will take some time and work, and some words may never really be "glued" in. I'm okay with that, but...

Back to Steven and me. He has the graciousness to NOT supply with a word I can't come with right away. He's super patient and waits until I ask him, "What's that word?? You know..." Sometimes it's laziness; sometimes the word is just nowhere to be found. So, we're a good team in that respect.

 On the other hand....

It is a well-known fact that Steven has legitimate'hearing deficits" - confirmed by a visit to an ENT and scans, etc. He can hear noises in the high range and the low range, but the middle range (the range in which people SPEAK) is hard for him to hear. So, when he started saying, 'What? What?" a lot more to me, it was particularly frustrating since I was working HARD to speak clearly, and was then having to repeat the process. And he blamed it on me talking too softly...yea, right.

But this week, my speech therapist said, "Have you always been a soft talker?" (Wha?!?!) She said she sometimes has to lean in to hear me - in a small room with no windows and only the two of us. Ummm...no, I was never a "soft talker" B.C.
Son-of-a-Bitch!!! Steven's right again!?!? <pouty face> 

So, I have been humbled yet again by this disease and have another goal to work on during speech therapy.The fact is that this experience...is changing our relationship. How could it not? I was going to elaborate on how, but I forgot what I was going to say, so, yea...ask Steven!

Love, June Xoxoxo #mfbcfnw

The One in Which I Reveal My Valentine's Gift

I've been following on Facebook, Twitter, and Instagram as people (read: women) show/tell what their Valentine's Day Gifts were. I thought I'd share mine:

Okay, it's probably not a big secret at this point...

My Valentine's Day Gift(s) 2015

A Man Who...

• Stroked my hair back from my face and placed tissues under my chin as I rode out a strong focal seizure, whispering in my ear, "That's right. Relax. You're doing great..."
• Strode along the hospital hallways, then the neighborhood sidewalk, and The Hill - always at my pace, as we talked or not talked - but always held hands.
• Literally, talked me into breathing again when I had a full-on panic attack after taking a new medication.  (If any of you have had a panic attack in your life, you know scary that can be.)
• Was my voice when I could not be my own voice in doctors' meetings and social gatherings...
• And had the patience to listen when I started to find my own voice, and know when to talk and when NOT to talk (most of the time)
• Somehow manages to keep this boat afloat despite the rocky seas - bill gets paid, appointments are made, medications are refilled...
• Has stood by my side the last four months during the most challenging time in our lives -
• Doesn't focus on my freaky, semi-bald, Alien Crop Circle head, but instead looks into my eyes and says multiple times a day, "You know I love you....I mean, I really love you."

And I believe him. Because only a really, really special Valentine could gifts like that. And yes, I'm fully aware of how lucky I am.

My Schmoopy!

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).