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 I Totally Embarass Schmoopy/Steven. Squeeee!

I was revisiting some of my blog posts, which I do occasionally to make sure I'm not totally repeating something I said before. FYI, I know I repeat things sometimes. Well, I don't know necessarily what it IS that I'm repeating, but I know I've said some things more than once here. I blame it on the treatment - radiation is notorious for affecting our short-term memory. But then I talk to other people who are my age or older, and they say, "I do that all the time, too". So, whether it's brain cancer or age - you pick - I wanted you to be aware that I know that I repeat myself.

Oh, Oh! Warning! Ear worm coming on! "I repeat myself when under stress...I repeat myself when under stress..." (Click at your own risk of spreading the earworm.)

 (Kiddies, you're just going to have to trust me on this one. You had to be in your formative years in the 80's to really appreciate this. But I didn't receive these socks for nothin')

(Now, that's one I think only my generation is going to remember. See! There are things we remember! Doesn't that feel good?) My job here is done. Oops! Not quite.

I had three high school friends who came to visit me within the last week. Two flew 3,000 miles all the way from the D.C. area to spend a day and a half with me. One lives in Los Angeles - and for all of you that don't live in California, look at map, people. It's BIG. It's not like she lives down the block.

But I digress.(It wouldn't be an authentic June blog post if I didn't bird-walk a little bit, right?)

I was extremely thrilled to see all three of them (of course), and honored that they took the time away from their busy lives to come out here to see me. Unfortunately, I had one glitch in my visit with Pam & Jill. When we planned the visit, my chemo cycles were not going to coincide with the visit, but with my Tooth Saga, I was on the tail-end of cycle #9 when they arrived. Saturday morning laid me out flat, and I had to take another five hours of sleep before I rallied for a wonderful evening. On the plus side, they got to explore downtown Livermore, and I was the recipient of some awesome goodies as a result (see socks above):and this sweet shirt:

If you come visit me, expect your car to be dirty when you leave. It's all DIRT, Baby!

It was all good in the end.

 Snuggled under blankets, listening to live music at Double Barrel in downtown Livermore. 

Visiting with Allison was a lovely time. She drove out from San Francisco at rush hour. I warned her about that, but then I remembered that she lives in L.A. (Hello! McFly! You call this "traffic"??) Fortunately, she arrived just in time to enjoy the sunset in my backyard, and we had a chance to discuss Life, Love, and the Pursuit of Happiness around the firepit. No pictures. I'm finding that I "forget" about my phone more and more - except for the app that reminds me when to take my meds. And pictures of sunsets. And sunrises. But spending time with people trump phones 100% of the time.

Saying good-bye with all these friends was slightly awkward (for me). Doesn't the saying go, "This isn't saying good-bye. It's just saying 'See ya' later!'"? But we all knew/know that in my case, that may have been good-bye. In fact, they might not have gone through that much trouble if there wasn't at least a tiny part of them that was saying, "This may be the last time I get to see June alive." We didn't discuss it, but I talked to Steven about it, though. (Hint: I talk to him about pretty much everything. So, if you tell me, "Don't tell anyone about this,..." that really means, "Don't tell anyone but Steven about this....")

Don't worry, my Warrior friends. I'm not dwelling on that last good-bye. If you follow me on social media (Instagram, Facebook, etc.),  you know that I'm spending a lot of time enjoying my new surroundings in Livermore. Sunsets, sunrises, walks with Schmoopy and the doggies...and trying to transform this house into our home.

It just so happens that my next MRI is scheduled for next Monday, 10/26, and that always brings on the scanxiety syndrome. Through yoga, meditation, and my Schmoopy, I keep re-centering myself to the present and the gifts I have every day: visits with family and friends, the beauty that surrounds me, and my best friend/love of my life...the best thing that ever happened to me. Namely: Steven.

I was at a wine club release a couple weeks ago, and one of the club members leaned into me while Steven was talking and said, "You know how lucky you are to have him, right? He's a good one."  (I resisted the urge to say DUH! And if you are reading this right now, #sorrynotsorry #braincancercard #freepass) Just in case you didn't know it by now, yes, I do know how lucky I am. He gets embarrassed when I talk about this, but that's just one of the things that makes him so special.

I talked to my "mother-in-love", Judy, the other day. (She lives in Arizona.) She feels helpless that there's nothing she can do to help me, living so far away. I get that, but there's really nothing that anyone can do. I told her, you already did probably the most important thing to help me through this.. You raised the man I married, my Schmoopy. I don't know what I would do without him. The greatest gift of all.

He shaved his head for me, but winery guests were afraid he was sick - and my hair grew back, so he has hair, too, now!
___________________________________________________________________

This totally didn't start out as a blog post singing Steven's praises, but I started writing, and this is what came out. It was going to be an essay on how to achieve World Peace and stop Global Warming. But I guess that one will have to wait. Priorities, people. Priorities! 

P.S. I know I've told you how bitchin' he is before. That's not a brain cancer or age/memory thing. I just think he deserves it.

P.P.S. Thank you so much to Jill, Pam, and Allison for the visits!!! Love, June Xoxoxo #mfbcfnw

P.P.P.S. And not to bum you out, but just a reminder: It could be "Good-bye!" for any of us - and not "See you later!" Something to think about when you are with your precious loved ones.

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.