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

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P.S. The only thing more beautiful than you is my granddaughter, Autumn Elizabeth. #sorrynotsorry

Autumn with "Mimi", the stuffed animal "Grandpa Steven" picked out for her in a little toy store in Paris.

P.P.S. FYI: We are already booked to do another river cruise in 2016 down the Rhone. Click on this link - Ama Waterways <---- if you are interested in joining us! If you don't know where the Rhone is, Google that Shit. Whoops, I almost made it through a whole blog post without cursing!

The One in Which I Went to Paris

I had been to Paris, France three times before this trip, but never with Steven. Crazy, right?

Charles de Gaulle christened my new passport!

1) The first time, I was about 14 years old (there's a mini-debate about the actual year, which could easily be resolved if anyone cared to look in any of several documents, but it's a family thing. You know...) I have no insight as to why my parents planned this trip, but I'm sure that's where I got my wanderlust. In fact, I was scheduled to attend a celebration of my dad's 75th birthday in Paris with them and the two oldest grandchildren in the first week of November 2014, but then I was diagnosed and had a craniotomy in the end of September, so THAT didn't happen quite as planned...

2) I spent a semester of my junior of college in Aix-en-Provence, France, and I flew in/out of Paris. If you don't know where Aix is...you know what I'm going to say...all together now: Google that shit! And everyone who is reading this that is in college or going to college soon (I apologize for the cursing...) Go for a semester abroad! I'm not messing around. Do it.

3) After I graduated from college, my parents gave me the most amazing gift of tickets to Paris and a Eurail pass. That pass let me get on pretty much any train in Europe and just travel for about 6 weeks! A-MA-ZING!

And then there was a little gap in my travel...okay, I didn't go back to Paris/Europe again until....2 weeks ago. Why? Well, there was this little thing called LIFE - a marriage, four kids, back to school for two years to get my teaching credential, a full-time job teaching...Don't misunderstand. It wasn't the time that was a factor. It was $$. We always chose to spend our $ on other things. We traveled within the U.S., but Steven and I had never been out of the U.S. together! Crazy to think about!

Then an opportunity came up: Steven was asked to do a Winemakers Cruise on the Seine with AMA Waterways.   
Kiddies, let's see if  you have been paying attention...the answer to "Would you like to do a river cruise on the Seine for a week?" is always what?
YES!!!  
Oh, goody! You ARE learning some things from me!

So, we said yes - geez, probably a year ago exactly. And all was hunky-dory and we were very excited, of course...And if you've been paying attention, at that time in 2014, I thought I was going to go to Paris twice in one year! Score!

Then I was dx'ed with GBM in the end of September 2014. The November trip was off the table. <sniffle, sniffle> and I wasn't at all sure that I would be able to go in April. A little insight here: When someone tells you that you have Grade IV brain cancer  - something that's nicknamed "The Terminator" - you aren't at all sure about anything. Like, at first, should you make an appointment to have your oil changed next week. No joke.

But I survived the first 30 day treatment, and I had follow up appointments with my doctors in January when I started my Temodar routine.  At my February follow-up appointments,  we asked about this Paris trip, and they said, "Why not? If you're feeling well enough at that point and things are still looking good..."  Well, slap my ass, and call me Sally! Okaaaaayyyy!  Game on!

My MRI in March was stable, and so I was off to the races! (See what I did there?) I packed a gigantic suitcase and got ready for our trip. The rest of this blog entry I'll answer the burning question: Is it different to go to Paris living with cancer? If you want the short answer: Well, of course it is, silly! Everything is different living with cancer. But that doesn't mean that it's all bad.

My plan was to go full-baldy the whole time - for the first time. I didn't even bring my wig because I didn't want to chicken out. What I didn't count on is being cold most of the time! Eek! (One of my anti-seizure meds makes that happen.) But thank goodness I brought some hats. Bald heads get cold! Steven says so, too! I have so much sympathy with baldies everywhere! But I did go baldy as much as possible:

The first night, they planned to embark by 9-10 p.m. so we could all see "a surprise".  They sailed the opposite direction a little bit so we would have a good view of the Eiffel Tower when it lit up.

We were using our lame camera phones so it doesn't look nearly as pretty as in real life  -- but isn't that true about everything? In fact, I was dumbfounded when I started downloading our pictures and I realized most of them were on Steven's phone - not my camera or phone! I was just in the moment instead behind the lens like I used to be!  (Remember when I said some things are different living with cancer? Exhibit A) And guess what? There are a fair amount of pictures of me! Go figure!

After the fanfare of Paris and the Tower, things settled down. We were sailing through Normandy - which I had never been on my previous trips. And as a certified History Geek, the only real images I had in my head was D-Day and the beaches. But Normandy is a region that I bet you could find a cat riding a unicorn with a rainbow in the background if one exists...which is to say that it is gorgeous - in an other-worldly kind of way! Why do we make these crappy looking houses in the U.S. when we would have stunning homes made of stone and wood?  
Look. at. this. beautiful. home.

 And. this!!!

I highly recommend this cruise down the Seine! Although, if you are living with cancer, you might want to pack  more warm clothes...

Notice the man behind me without a jacket on...just for perspective!

 Okay, it wasn't ALWAYS that cold!

Also, I slept a lot. Daily naps are really important to me, and we were walking and on our feet a lot every day. In fact, we missed entirely all three possible guided tours of the Chateau Gaillard (Google is your friend, people!), but when I got up, we decided to go rogue and do our own tour. We had to hustle up a hill to see it, but it was fine and we even had time to walk the quaint streets of Les Andelys.

View of Les Andelys after trek to Chateau Gaillard

The Ruins of Chateau Gaillard as seen from ship - It was worth the walk to see the "real thing"!

Oh, and every day, Steven did a 45 - 60 minutes winemaker presentation, which were very well-attended. I was supposed to keep him on track so he didn't go over an hour. I'd set my phone timer and every 10 minutes, I would put a "10 minutes" to signal time spent. I think our signals were crossed because I'm pretty sure he interpreted that as "mambo dogface in the banana patch..." (Sorry, Steve Martin 70's reference for all you wild and crazy guys and gals out there!)

We had ~24 Steven Kent Winery club members sailing with us, too, and it was awesome to get to know them all better. We had the pleasure of having meals with many of them and tours. I won't post their pictures on here because I don't have their permission, but if you happen to be reading this and are okay with  public posting, just shoot me an email: junemirassou@gmail.com. In the meantime, y'all are going to have to use your imagination! haha!

The most anticipated stop for me on this trip was the beaches of Normandy. Now that I've been there, I almost don't want to post pictures of it all because there is no way to capture the feeling you have when you're there. Imagining these young men - boys, really  - being dropped in the water or falling from the sky to try contend with what they'd been sent there to do...it's hard to even think about...

9,386 Americans are buried in this cemetery in Normandy. It is estimated that there were 135,000 American casualties total as a result of the Normandy invasion. Let's all take a moment of silence and gratitude, shall we?

After Normandy, we turned around and started back to Paris. We ended up four full days there, but that's when I think all that activity started to wear on me. And it was a challenge to time my medications and meals because my meds made me sick on an empty tummy. I just want to make it clear that I am NOT complaining about my trip to Paris. As I said, I'm just trying to explain what I said in the beginning: how it was different with cancer.

I had pictured that Steven and I would visit all the major sites: Eiffel Tower, Louvre, Musee Picasso, Notre Dame, Versailles...followed by romantic late nights in bistros or wine bars. But it quickly became apparent that I was capable of about 4-5 hours of walking. (If you haven't been to Paris before, it is a walking city. there is also excellent public transportation, but since I've been there last they added this RER to the Metro system, which is sort of like BART in the Bay Area? And truth be told, part of Paris is seeing the streets. Check this out! Steven even got all artsy and took these pictures:

We managed the Musee Picasso - which is amazing, but overwhelming, and the de L'Orangerie which has a room with four enormous panels of Claude Monet waterlilies - breathtaking! And we did end up using the RER/Metro to go to Versailles because I was adamant about Steven seeing it.

In the gardens of Versailles - I call this my Inspector Gadget look. Don't blame me. Steven picked out the hat in a vintage store in Le Marais, and he kept declaring how "awesome'" it was. Xoxoxo

After all the activity of the day, I was barely able to stay up until 8 or 9 p.m. and a couple of times, I think I skipped dinner altogether. There were no late stops to wine bars, although I think Steven went down the street from the hotel to one once I was asleep.

Kiddies, I never lie to you, so I'm going to confess that I had at least two complete emotional breakdowns because I felt it wasn't "fair" to deny Steven all that Paris had to offer because of my lame physical weakness. He brushed my tears away and reminded me that all he wanted was to walk the streets of Paris with ME, soaking it all in. And that's what we did. 

The thing I'll remember most about this trip is that I spent thirteen days, pretty much all my waking hours, holding my husband's hand. And every once in a while, he'd pull my hand to his lips and kiss them softly and say, "You know, I love you." And I'd say, "I love you, too." and he inevitably would counter with, "No, I REALLY love you." or "Not only do I love you, but I'm IN LOVE with you."

The One in Which I Go Full Baldy and Still Feel Like Merida from Brave

Shall we go in the Way Back Machine...just kidding...about a month ago, when I decided to get my hair cut "short"? (See post if you've forgotten/missed that one.) If you remember, I was specifically told that I wasn't going to lose all my hair from the chemo I was taking, BUT I would lose "patches" of hair due to the radiation treatments.

So, rather than shave my whole head, I decided to cut it short and just see what "patchy" really meant. In my case, "patchy" meant I lost almost all of my hair from the crown on down to my ear on the right side of my head. There were not going to be any comb-over techniques to hide this one. I still had basically a normal amount of wavy, curly hair from ear level to the nape of my neck. So, if wore a hat, there was the illusion that I wasn't Full Baldy. But without a hat, it was just a hot mess.

Also, I signed an actual paper that said I understood that there are no guarantees that lost hair will ever grow back again...so, it was time to jump in the deep water of:

1. shaving my head
2. getting a wig (or two)

So, naturally, I went to a professional....

Schmoopy AKA #myrock shaved his head weeks ago in solidarity.

Now, he's obsessed and thinks it's "too long" if more than two days have gone by between shavings. Love you, Schmoopy!!! #baldhottie. As a result of all his recent experience, I entrusted him to shave my head. We have no pictures because I was trying to avoid the mirror during the actual "act", and it looked really messy anyway. Like, there was HAIR EVERYWHERE!

First, he had to scissor cut the considerable amount of hair that I still had on my head. Then he had to do that actual shaving. When I first looked at it, I thought he didn't know what he was doing - there were still dark patches and totally bald patches...abut then he explained to me that the BALD-BALD was from the radiation - when the hair literally falls out, and you've got NADA on your scalp (except redness and dry skin from the irritation).  The dark patches were stubble from my hair that was actually still there. So, the Natalie Portman stubble thing was not to be.

Natalie Portman famously shaved her head for V for Vendetta. I definitely need to learn how to do the smokey eye thing...

In case you're wondering: I would have to razor shave my whole head in order to get an even look - and I've been told that is not the way to go. (Owie! and a major commitment to keep it up)  I was thinking about doing a chalk drawing of a globe or something, but that would only be for special occasions, of course.

Steven, Me, and my brother, John - Baldies Unite!

But first let's put some hats on! Brrrrrrrr!!!!

The bald thing really isn't a big deal. Let's face it. That is NOT one of my 99 problems.  It's all about adaptation. The single biggest thing I've noticed is that my head is cold! How do men do it??? They just get used to it?? My (obvious) solution: Hats, hats, and more hats!

I got a couple sleep caps which are super soft and warm at night. And a skull cap like thingy so I can wear basically any hat and not have it chafe my scalp - which is getting tender due to being to close to the end of my treatment. I have also ordered a wig that I will have in about a week. I don't want to reveal that just yet, but let's just say it is NOT this:

I ran the Princess Half Marathon in 2013 dressed as Merida. Not too many women dressed as Brave. I found this guy at the start, though. 

Although Merida's hair didn't inspire me with my wig choice this time, she's been very much on my mind during the last few days of baldiness. Because her hair was spectacular (in the movie), and she is a such a badass.

I've just finished up week 5 (of 6) of my initial treatment. These last 7 treatments are called "boosts" where, in addition to the normal routine, they spend some time really focused on a specific area of the tumor cells.  I had been trying to avoid steroids as much as possible (because of the unpleasant side effects) but they are amazingly effective at minimizing swelling of the brain tissue. I started taking them last week because I realized that I was having some headaches and my speech was being affected/slowing down. I guess the "boosts" are causing more swelling because Doctor Rad (the radiologist) has upped my dosage for the last week. This will help with the headaches and speech, but probably make me look a bald chipmunk!

I created a playlist from Brave's soundtrack to play during my treatment yesterday, and visualized this scene from the movie when this song came on. Ultimately, Merida learned in that movie that she didn't have total control over what happened in her life, but she could remain true to herself, face adversity proudly, and do the right thing.

We can't control everything, but we can control our reaction to it.

Merida hair gone, but a half-marathon medal around my neck!