The One in Which I Start my Last Week of Treatment and Talk about HOPE

Last Friday seemed like it's been a tipping point for me in my treatments. I mentioned that I started my "boosts" on Thursday, and I was wiped out in the afternoon, with a headache and slowed down speech. The doctor increased my dosage of steroids on Friday and cautioned me against pushing myself too hard. When he heard about our daily 3 mile walk up Communications Hill, the radiologist's eyebrows went a little wonky. They want me to exercise as I feel up to it, but not go too crazy. Moderation? Oh, yea! That's totally me! (not.) But I'm trying to balance my longer term goals with my recovery. Pssst! Hint: Recovery comes first! And I'm pretty sure my radiologist knows more about this stuff then I do....

Sure enough, I woke up feeling drained and spent most of Saturday in bed, nestled under blankets and reading online/watching Netflix. (Query: Is it possible to get to the END of Netflix?)

They say a little exercise can actually combat the fatigue, so I went on a little, leisurely 2 mile flat loop walk around the neighborhood with Steven in the late afternoon - No Hill!

And I was feeling better by Sunday morning.
<insert superhero sound effect here>
I made juice for all of us, walked Communications Hill with Steven, and even made lemon bars for "the guys" in the afternoon...Then I spent the better part of the late afternoon/evening in bed before having a fitful sleep (probably a side effect of the increased steroids). I may need to back off the Communications Hill workout - at least until the end of this week. What was that word again? Moderation. moderation....I'll keep trying...

Side note: someone responded on Facebook about this article about Communications Hill saying that they didn't think that it was actually the name of the hill - but rather something that I had just made up. Haha! I guess it would make sense because that's where Steven & I do a lot of talking...but if you read the article, I guess people do a lot of...<eh hem> "communicating" - and other things -  up there, too, that the residents don't like very much. Doh!

See, I was going to insert the obvious Clint Eastwood, "Get off my lawn" picture, but it was too cute to pass up!

As I've mentioned already, as my initial 6-week treatment is ending, it's time to switch into the "Now What?" mode. For 6 weeks, I had it planned all out for me, and the path was really clear. So, in reaching back out into the interwebs and reading about Long Term Survivors. I stumbled on a document from The National Coalition for Cancer Survivorship called, "Self-Advocacy: A Cancer Survivor's Handbook" (a very good read if you or someone you know is living with cancer). But this lead me to another document that I've been mulling over in my mind:

"YOU HAVE THE RIGHT TO REMAIN HOPEFUL" <--- click for document!

It was published in 2008, so maybe there's a newer version, but this one is free to read online, and I felt like it said so many things that I've been thinking and feeling, I wanted to share it with you. It's related to cancer survivorship, but I think it could be relevant to anyone in a very challenging situation.

As you can probably see from the more serious nature of my blog this past week, I'm definitely going through a transition period. Steven and I discussed yesterday how hard it is to remain optimistic in a world that can be so cynical and pessimistic. So, it really hit me when I got to this part of the article that makes a clear distinction between: wishing, optimism, and HOPE.  I'll leave you to read the details if you're curious.  
Aside: Don't you hate when you go to a presentation or professional development and someone just reads the words from the PPT slides??? Uh...thanks, but I can read for myself. Do you have anything new to add to the discussion???
P.S. There are a lot of good quotes about HOPE in there, though, if that's any incentive.

Despite my drugged up state in the hospital before and after my surgery, one of the few things that I remember was meeting my neurosurgeon, oncologist, and radiologist and all of them using the word "hope"and "hopeful" repeatedly. Whatever they were saying to me was probably very deep and meaningful - and I'm sure Steven understood it - but what I was mostly thinking is:

"Whoa! This is trippy!"

So,  I hadn't thought that much about HOPE as a concept until now.


Okay, I said I wasn't going to read from the article and I was going to let you read it yourself...and I swear, I'm not usually a liar, but this is so good....so much better than I could have said it:

Hope is “mental willpower plus waypower for goals.” Willpower, in this definition is “the driving force to hopeful thinking.” It is a sense of mental energy that helps move a person toward a goal. Waypower, the second component in the hope equation, is the mental capacity used to find a way to reach your goals. It reflects the mental plans or road maps that guide hopeful thought.

That sounds like another Good Will Hunting type of equation, doesn't it? I'm no genius, but the main part I get out of it is: HOPE is more than just wishing that something good will happen or expecting that it will happen (being optimistic), but HOPE is directly tied in with positive beliefs, goal setting, and a sense of self-empowerment...(plus a huge dose of adaptation on the side) <-- I added that last part. So, sue me. #freepass

What struck me the most in my first read of this article is the idea that "Hope is individualistic," -  that the way your hope develops is dependent on your family culture..."and it important to realize family differences with regard to hope."  huh. So, of course, I start thinking about the family that I grew up and what hope meant to us.... and the family we have now and what hope means to us... Newsflash: I could write an entire book on that, and this post is already ridiculous long! Sorry! So just FYI - I'm just opening up a dialogue about this...

I was deeply influenced by my own family's sense of HOPE. And I think that Steven and I have passed that along to our own children. We were instilled with the belief that if you set goals and work hard, you can usual attain them. (As long as the goal were realistic. It doesn't even have to be likely. It could be highly unlikely. For example: Anyone of us could have president of the U.S. But we didn't encourage the idea of hoping you could be a unicorn - at least after a certain age of childlike wonder.)

Bottom line: We were deeply steeped in a sense of self-empowerment. And I believe we've passed these beliefs on to our own children.

Big ah-ha moment for me: I've had plenty of willpower (I'm a Mother Fuckin Brain Cancer Fighting Ninja Warrior, after all) - throughout my life and during this shitty two months -  but this transition period is about tapping into the "waypower". The good news is that I've used "waypower", too, to reach my goals -  to create training schedules to run marathons and half-marathons, go back to school and get my teaching credential in 2003 (with four kids), etc.

But I've never applied it to this situation. I think this time, I'm not going to be able to do it alone. I'm going to need the help of my family, friends, and medical team, It's scary as hell because there's no clear path, and Steven and I are going to have to make decisions without clear right or wrong answers. Hint: if you think that you have the "right answer" you probably shouldn't share with us - at least with that filter -  because we know enough to know that there isn't yet a CURE AKA "right answer". 

But we have to "develop mental plans and road maps" to guide us toward our goal:

to be a 

Long Term Survivor.

This is one of the great quotes from the article that I'll leave you with:

No matter what befalls me, I feel commanded to choose life. You cannot give in to despair. You may hit bottom, but even then you have a choice. And to choose life means an obligation not merely to survive, but to live. ~ Nessa Rapoport