The One in Which I Explain Why the Little "Oops!" Mattered to ME

I completed my 11th Chemo cycle this month. But it didn't go without incident - and one could say I "lost my shit" a little bit about it. Some people - some people that know me really well - were perplexed about my reaction. I mean, I've gone through so much, and what's the big deal if my cycle is off a few days. So, I thought I'd explain why it was a Big Deal to me.

I have collected a bunch of tools to help me through stressful times in my life. Not just with cancer, but throughout my life. They usually work. One biggie is that I go through in my mind and visualize what is going to happen. I try to research as much as possible and ask experienced people what to expect, and I use that to help with that visualization. For me, that helps to alleviate the anxiety that I might be anticipating/experiencing.

Despite my love of technology, it's the paper and pen/pencil method for me. And the system works.

So, it's no surprise that the way I deal with these chemo cycles is the same way I deal with many unpleasant and/or necessary new stressful experiences. I visualize what will happen, and plan for it. Every month has been slightly different, and I can only control what I can control. I work through in my head what I think is going to happen and step through it in my mind. On a Chemo Day, I take my meds at bed time. I have to stop eating two hours before I take my meds. And I have to take an anti-nausea pill 1/2 hour before I take the chemo. I am very careful what I eat all day, too - just in case. Being kind to my stomach and system for the onslaught of poison that I will be subjecting it to in a few hours. And don't forget the towel at the side of the bed before going to sleep, to protect the carpet. Basically, I mentally and physically steel myself for the five days.

Fast forward to this past week. I was supposed to start my 11th cycle of chemo on Sunday. Steven had talked to the specialty pharmacy, stressing that I needed the meds by Tuesday. I take two pills at night during that five day cycle. 180 mg. and 140 mg. I had "extra" pills to get me through Sunday and Monday (why is not relevant to this story) But they swore that they would get the pills to us in time for Day 3.

Only they didn't. #epicfail

Many of you know that I was an avid runner for about 2 decades of my life - and I've met some really amazing people through that passion. I've run three full marathons, and I think three half marathons, in addition to many 10K's and a few 5K's. #MFBCFNW's like a challenge, I guess! Rawwwr!

Sorry, but need to stop here and teach some of the kiddies something:
A MARATHON is 26.2 miles. period. Not just any race can be called a "marathon". If you call a 10K or a 5K a "marathon",  you might see people's eye twitch while they try to be polite and keep their mouth shut. But they are MARATHONERS...and have fucking run 26.2 miles in one shot. And that's a big deal. Get it straight.
A HALF-MARATHON is then (take out your calculators, kiddies) 13.1 miles.
A 10K is 6.2 miles and a 5K is 3.1 miles.
End of lesson. [If I've taught this lesson before, don't forget I have a #freepass and #braincancer.]

My first marathon was the Inaugural San Diego Rock 'n Roll Marathon. I made sure I included "inaugural" because this is important. I knew other people who had run marathons and listened and learned and tried to prepare as well as I could for that race. Like what you do if you have to go to the bathroom during the race??? (I'll have that one remain a mystery for now. Ask someone who has run a marathon for the answer. It could be fun! haha!)

What we couldn't anticipate was that the race coordinators would fuck up a few things  - like they weren't prepared to pass out enough water for us the "middle of the packers"? So, we arrived at the first couple water stations and the volunteers didn't have any water in cups to pass out? (Lesson learned: I always ran long distances carrying water after that because I'm a planner. Also, the route went across a railway, and I had to STOP during my run to let a long cargo train pass through. That was something else I didn't anticipate. Good times. Good times. <--- to be said with extreme sarcasm
I ran the next two R'nR Marathons in San Diego, I guess I forgave them in the end.

The point is - no matter how hard you plan and anticipate what's going to happen, sometimes things happen that you aren't prepared for. And for me...that's very tough. Everyone together, please:
I'm a planner! 

When you run a marathon, they have a phenomenon called "The Wall". At about 20 miles, the body sometimes says, "Uh uh. I've had enough of this." My first marathon, I literally saw people sitting on the curb at around this point. I've often said that the last 6.2 miles of a marathon is mostly mental. Every fiber of your being is saying "What? Are you fucking crazy??? I'm DONE." But you say back to yourself, "You can do this. You've done this before. You can do 6.2 miles. Easy peasy!" You know it's not going to be easy, but...I'm not a curb sitter.  [This is different from a physical "bonk" where your body is just DONE for whatever reason. If you don't understand, Google that Shit. I've gotta move on...]

Finish Line of the Rock n Roll Marathon - Rawwrrrr!

So, on Tuesday, we kept waiting for this package to arrive. I was mentally and physically prepared. And the meds never arrived. I was starting to freak out. Steven called and they said, "Oops! Somebody forgot to push some button...or something..." They were very apologetic, but couldn't do anything about it. In fact, we could expect the meds on THURSDAY to resume the cycle. What. The. Fuck.

Obviously, the person on the other end of that phone didn't really understand that it mattered. But it mattered to me A LOT. I wasn't prepared to extend my cycle for two days. And I lost my shit. Crying and gnashing of the teeth. It didn't seem like a Big Deal for some people around me, but I was mentally a mess. (P.S. Thank you to everyone who offered support and understanding on Facebook when I vented about it.) It might have seemed like nothing, but it was...too much for me at the time. I already was mentally trying to keep it together, keep it together ...wondering/hoping that this is working help keep my cancer at bay. And then altering a cycle made me wonder, is this going to decrease its effectiveness? The mind can be a very powerful thing.Who knows? I kept trying to release those thoughts, but it's hard!

I meditate and do yoga to calm myself down - because that is something that I have control over. And it helps. I have notebooks and calendars, and I write here - which also helps.

One of my journal pages. I think it says it all.

I just thought you should know why the Ninja Warrior lost her shit last week. Because everyone does sometimes. Just don't forget that your mind is a powerful thing. Give it some credit to push you through the walls of life.

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If you or someone you know is going through some tough health issues, I've found this meditation for healing video on youtube that you might like. If not, search and there are a ton. One of them might "click" for you.

Gratuitous picture of my granddaughter exploring her new pillow pet. Someday, I hope she will forgive me for cursing so much. Xoxoxo Grandma June doesn't cuss. Just #MFBCFNW <smooches!>

The One in Which I Don't Leave You Hanging

I realized that I left you with a couple of cliff hangers with my last post. Time to release you from the suspense!

Many of you read already about the first issue: my unstable MRI, but just for my blog readers who aren't on Facebook - there's good news! OR "not-so-bad news"? My local oncologist and radiologist, and UCSF neuro-oncologist and the UCSF Tumor Board have all reviewed my MRI scans, including the most recent one with the change in site #2. There was consensus that the change they were seeing was related to my radiation therapy and not progression of the disease. In fact, the site #1 (where the tumor was resected) looked a little smaller). I say "not-so-bad news" because brain changes as a result of radiation are nothing to sneeze at. But the fact that the cancer is responding to the Temodar (no growth) is definitely something to celebrate. I have two more cycles to go - I'm in the midst of one right now. Cycle #11. After Cycle #12, I "graduate". (I wonder if I get a diploma or something? I should get something, don't ya' think? Oh, yea. I'm still alive! That will do nicely as a door prize, thank you!)

The second cliffhanger is more global in scope. If you remember, Steven asked both our local oncologist and UCSF neuro-oncologist at our last appointments (separately) if they thought that we would ever find a cure for cancer. And I left you hanging about their answers. I know they collaborate extensively, and maybe the oncologist gave the N.O. a heads up, but they both answered with similar responses. Their opinions were...

"Not in my lifetime." I'm estimating that these doctors are in the late 30's, early 40's, so that pretty much leaves me S.O.L. if we believe them. BUT they had a caveat! They believe that maybe the scientific community will find a way to LIVE with cancer, in the same way people live with HIV - controlling it so you can have a good quality life and being told you have cancer won't feel like a death sentence. That sounds like a super scenario for me at this moment.

Kiddies, Here's a little history lesson:  I went to college in the early '80's when the AIDS epidemic was just becoming widely well-known. At that time, if someone was told that they tested positive for the HIV virus, it was considered an automatic death sentence. There's still not a cure, but people who are diagnosed with the HIV virus have a lot of hope that they can survive in this day and age - if they get diagnosed soon enough. Be smart, and if there's any doubt, get tested!

So, what's going to make a difference with a cancer diagnosis? How are we going to get there? I'm aware that many of my Warriors out there have made very generous donations to some of the organizations that are working hard to find answers to eradicate Cancer. Thank you so much for your generosity!
Here are some links if your looking to fund the cause:
American Cancer Society
American Brain Tumor Association
UCSF Neurology & Neurosurgery Medical Center

My Legacy
I've been reflecting a lot on how I personally can make a difference - and as many of us do when faced with our own mortality - what kind of legacy I am going to leave behind? Unfortunately, I didn't invent Facebook or Microsoft, so I don't have fortune to create a foundation. So, that one's out. I feel like my contribution is just a drop in a bucket. A very little drop in a very large bucket. Together, we can make more of SPLASH, of course. I don't want to discourage donations and volunteerism. But I want to feel like I made a difference, personally, too.

I remember a riddle one of my teachers in high school shared with us decades ago:
This father and son are driving in a car and they have a horrible accident. Tragically, the father dies instantly, but the son is critically injured and is transported to the hospital. He requires immediate surgery. When he is wheeled into the surgical room, the doctor rushes in, takes one look at the patient and says, "I can't operate on him. He's my son." Who is the surgeon? The students shouted out possible answers:
"His stepfather!"
"His grandfather!"
"His uncle!"

No one guessed the right answer:

"His mother."

How many of you got the answer right before reading it? This is 30+ years later. We need society to view women as just as likely as men to be in the fields of Science, Technology, Engineering, and Mathematics, sometimes referred to as STEM.

source: http://divaneering.org/our-programs

It hit me like a lightning bolt the other day. I was a teacher...I AM a teacher. And one of the things that I was passionate about was instilling in my students' minds that they are not ...or should not have their aspirations confined by their gender. Boys can be ballet dancers; girls can be engineers, etc. Years ago, I was the team manager for an all-girls First Lego League Robotics Team that kicked butt in a regional tournament. Wooot! (FYI - If you have an elementary or middle school child, check this program out! And in high school, they have the FIRST program.) Boys & Girls interested in robotics? Welcome!So, yes, I believe we need to continue to fund research for Cancer, and I would be so grateful if they came up with a way for me to live with cancer for a long, long time. And that could be a man or woman or a bunch of men and women! Imagine that!

But I think that I would like (part of) my legacy to join in the movement to create a paradigm shift...at least for some more people in our culture to encourage girls/women to look at education and careers in STEM. (Just for the record, our NO at UCSF is a woman.) Maybe one of them will find a cure for cancer - or unravel the mystery enough that we can LIVE with high quality lives with the disease?

Regardless, it's time. 

Obligatory Picture of my Granddaughter,Autumn

Maybe my granddaughter will grow up and answer that riddle with confidence and no confusion? Maybe she will grow up believing she can be anything she wants to be. I hope so.

Please feel free to contact me if you think there is an organization or movement to which I could volunteer time and make a difference! And maybe think about ways that you can be a part of this paradigm shift as well.

The One That I Waited Until After Thanksgiving to Write

I had my latest MRI scan last Monday. Surprisingly, my radiologist was in his office on Wednesday rather than in his car, driving to some family Thanksgiving gathering. And he called. He was going over our latest scan report and wanted to let us know the initial results. He's always been so good at understanding that a couple in our position is on pins and needles until we hear something. What he did not know is that Steven and I had decided to NOT pursue the results until after the holiday, so we wouldn't be distracted or distressed if the news were not good. But he called, so there ya' go. In the end, I decided that it was better to hear, rather than stick my head in the sand.

 Ninjas don't hide from the truth. They face it straight on.

And son-of-a-bitch, the news was not good. They've seen another change between scans. (I think I hear a collective sigh and a couple curses from my potty mouth soulmates.) But hear me out, and I think you'll feel at least a little better in the end. Or not. It is what it is.

This scan is different because the enhancement or "growth" is not in the primary location where my tumor was resected, but in the secondary location which was only discovered after surgery when a post-surgery scan was done. It was hidden/obscured before the resection and has been in debate and an unknown all along. It could have been just scar tissue from the grand mal seizure, and then the enhancement is radiation necrosis from the radiation treatment? Or it could be a secondary site of the disease. It was looked at closely by both the Good Samaritan and the UCSF Tumor Boards before my treatment began. Once again, the only way they could know for sure what it is is by doing a biopsy = craniotomy. Which no one would ever do - unless I had neurological symptoms that required it. And the good news is I don't appear to have any new neurological symptoms.

[Kiddies: FYI - No one opens up the cranium casually. It's a pretty big deal, so if someone on the street says, "Pssst! Hey, do you want a craniotomy?" Run away. They are not a good person. Didn't your mom or dad ever teach you about stranger danger? Geez-a-louise!]

Kiddy Recap: Just say NO! to candy, puppies, and craniotomies from strangers. Got it?

What we did know is that this secondary site has been very stable (until now).
Reminder: My radiologist took a great deal of time and energy working with the Tumor Boards' recommendations and collaborated with the oncologist and neuro-oncologist to decide what exactly my radiation treatment would be a year ago, and if he would treat this secondary site. The answer was ultimately "yes". Again, no one radiates an area casually, but IF it were cancerous, it was better to take care of it at the same time as the primary site was treated. So.....just like the primary site change of last month's scan, this change might be scar tissue from the treatment (radiation necrosis,) or it might be progression of the disease. The new scan and my case will be reviewed by the UCSF Tumor Board next Thursday, and we will meet with the neuro-oncologist on Friday.

That's all we know. Period.

The last couple of days, I've had this image of walking along and suddenly being confronted with a dark crater. I know that I eventually have to step in that hole and see what happens. It could be a small hole, and I could land on my feet unscathed. Or it could be a very deep, unfathomable hole where I plunge further and further down waiting to find out what happens when I land, crumpled at the bottom. Dazed by the journey, perhaps with serious injury , but hopefully alive.

We told the our family about the situation - that's what we're there for, right?  - to support and love each other.  But I opted not to "go public" until now. No sense in having other people have their Thanksgiving clouded with uncertainty. And I know some of you lovely June's Warriors would fret and get bummed out. Because you are so lovely and empathetic. And I love that about you! <smooches!>

So,  I have tried to avoid going near the crater for the last two days.

  Picture me strolling along in the vineyard with Steven and the doggies, whistling a happy tune and saying, "la, la, la...what hole?", carefully scooting around it....

Or Steven grabbing my hand and gently leading me away from the thing.

My mantra, as you know, is: Worrying won't change the outcome. And just as a reminder:
we have no idea what we're even dealing with right now.

The last few days, I've so enjoyed my family and all the conversations, hugs, kisses, and LOVE that I was lucky enough to be surrounded by. I soaked in the beauty of my children and my granddaughter - their love for each other and me.  (I'm still waiting for pictures of the actual Thanksgiving dinner, so I'll share some other family pictures for now...)

Gratuitous picture of my granddaughter, Autumn. - This might become a regular feature of my blog posts.

I looked, in wonder, at my parents and my brother...

Steven captured this moment on Wednesday, watching the sunset on our patio in the c-c-c-cold with my Dad, Mom, and brother, John.

...and all the rest of the lovely people around the Thanksgiving table and thought we are all so lucky to have this moment, right here. To gaze into each other's eyes and feel so embraced by each other. Precious gifts. I just "walked along" in life and ignored that shadowy hole in the background.

There's a form of torture (I bet it has a technical name, but I don't want to google that shit because that doesn't sound like something I wanted to be imprinted in my brain. And  it will probably lead me to disgusting sites about the Nazis and other loathsome, hateful groups.) But the technique involves making a person wait - not knowing exactly what their fate will be - but instead having them envision all the awful, gruesome things that might be ahead. As I think about it...Who needs google? The technical term is: Mind Fuck, right? As the name implies, it all starts in the mind. I can't control what is happening in my BRAIN right now (for the most part, but that's a discussion for another day), but I CAN control what's happening in my MIND.

I do know that when I have to approach that shadowy crater, Saint Schmoopy (He was canonized this week, if you missed it.) will be by my side. We'll take a deep breath and step in together, as we've done every step of this journey. And with my strong, brave, and loving children, and the unwavering support of my family, and YOU, I will face whatever comes our way. Step by step. After all, that's really all we can do, isn't it? Be brave with me. Yes, it helps!

Love,
June Xoxoxo #MFBCFNW