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.