The One in Which the Ninja Warrior gets Punched in the Stomach

Warning: This blog post is rife with cursing. To this, I say: 1) too bad so sad. I have a #braincancer @freepass and 2) I really couldn't give a fuck if you're "offended". The Ninja Warrior is feeling particular feisty today, so.... if you don't like that, move along, move along, nothing to see here....you're clearly in the wrong place.

This week has been a DOOZIE!

On Sunday, January 24th, we had an amazing Open House at our new home with the guest list tipping above 100+. That doesn't count the people on evite who didn't respond or said, "no" - and those of you who are saying, "WTF? I thought we were part of their circle of friends." I'm sure you are. Have I mentioned that I have #braincancer? and Steven has a wife with #braincancer? The invitation list was a clusterfuck. Weeks and days before the party, we were saying, "Did we invite ____ already?" Shit! And I'd be on evite trying to right the wrong. So, I'm truly, truly sorry if we inadvertently omitted you.<smooches!> It doesn't mean we don't love you!

Anyway, the party was a blast - Steven and I were celebrating so many things, but one of the biggest was Schmoopy & the Outlier were celebrating June being around for 16 months. Living our dream in a house right in the middle of the vineyard. Woohooo! 16 months is a big deal!

Here's me, playing my jam, "Fight Song" - Yes, it's totally hokey, but I never said I wasn't hokey. P.S. I am. DUH! 

Technically, I don't think that I'm "Outlier" territory exactly (if I remember my one semester of statistics at George Washington University - see below), but I know that it felt gooooooood. You see, GBM patients who go through the same treatment I've been through, Radiation (30 days) and Temodar (chemo) for over a year - the median survival rate is 15 months. So, if felt to me like I crossed a finish line, but there was no end. In my mind, I was fist pumping as I ran through the tape, but didn't stop. I was still running and running and calling over my shoulder, "I'm still heeeeereeee!!! I'm going to keep running until I can'ttttttt!"

The next day, Monday, January, 25th, I had an extraordinary experience of attending the TriValley Martin Luther King, Jr. Fellowship Breakfast and received a Legacy Award. (Kiddies, see my last blog post. Come on. Don't make me link it. Don't be lazy! You can find it, if you try.) All that you have to know for the purposes of this post is that the morning/day was another celebration for Steven & me. Not only was I survivor, but I was being honored for what I've done the last 16 months! Incredible!

They said it was difficult enough to fit those four words in my name, so #mfbcfnw was dropped due to space limitations,

Tuesday, I had an MRI. Truth be told, it was originally scheduled for Monday, but we had to reschedule it because of the breakfast. It was the last post-chemo MRI scheduled and a big deal because if they found it stable, I was officially starting the "Watch and Wait" without medical interventions. or "Watch and Live" stage as I renamed it.

I spent Wednesday morning with my notebook and the computer, making preparations for two new adventures that I had on my goal board within the next few months. I don't know if I've shared this with you already or not, but long-range plans can be hard because of my condition. I sometimes experience anxiety when Steven and I start talking about things that are far in the future. For example, he's been trying to nail me down on specifics related to our Wine Lovers river cruise in April. It's been on the calendar for about a year, but (...call it superstition?)


I think it's sold out, but if you want to read more about it, click here: River Cruise <----

I avoid talking about things that are THAT far ahead. But when I crossed that imaginary "finish line" and broke the tape, I began thinking that I'd bought myself some time.

I don't know why I chose this arbitrary length of time, but I felt like I had about six months of "waiting and living" to just keep jogging along before I had to face changes in my condition. It seemed reasonably short, but a wonderful respite from all the medical interventions. The cruise is in April, so I felt comfortable making plans. And we'd just booked flights in March for my youngest, Sara, and I to go to Florida with my parents and visit Disneyworld and Harry Potter World. Harry Potter World!!! I was on the computer, getting goosebumps, just imagining going to Diagnon Alley and drinking "butter beer" with her.

Diagon Alley!!! Awesome!!! ( I already told you a million times that I'm dork and love hokey.)

The evening of Thursday, January 27th, we heard from our neuro-oncologist via speaker phone in regards to my MRI results. It's like she grabbed my shoulders and stopped my jogging, saying, "Stop celebrating. The cancer is progressing." No, that doesn't really describe the experience. It was like being punched in the stomach. Only, my NO is so gentle and sweet, I can't imagine her punching me at all. But it sure was a whopping punch. Through speaker phone, she described what the UCSF Tumor Board saw in my latest scan. The dreaded words: "disease progression", and we arranged to meet the next day to discuss it further and talk about Next Steps.

Which brings us to yesterday, Friday, January 28th. I'm not an Outlier -- for now, anyway.

I hope to someday to be wayyyyyy out there as an outlier, but I'm still in the cluster of dots.

 I'm sure as shit still a Mother Fucking Brain Cancer Fucking Ninja Warrior.RAWWWR! Don't doubt that. And if you are sitting there with your jaws hanging open with shock and sadness...I hate to say, "I told you so."...but I TOLD YOU SO! GBM is a mother fucker! It grows. That's what it does. As Steven eloquently says, "Does a cat have an ass?" (Yes, he has a B.A. and an M.A. in Literature. Ah, that was money well-spent. haha!)

So, I knew this time would come. I just didn't expect it so soon. I feel good and healthy. I completed my first week from training for the Couch to 5K for fuck's sake! (Oh, when I said that to my NO, she said, "That sounds like a good plan." Have I told you that  I love my NO! So, I'm still planning on running/jogging/walking that 5K in March.)

We met with her at UCSF yesterday and went over the options for the next steps. We are still in shock and overwhelmed by the situation, so if I don't respond to messages or pick phone calls right away, please don't take it personally. Maybe some of you missed my first post about talking to someone (me, specifically) who has brain cancer. I've put a handy link HERE <---- if you're interested or left unsatisfied after reading this one post.

One thing that I talked about there that's still very relevant....please don't tell me that "I got this!" or "You can do it!" Don't get me wrong. I'm going to keep fighting, and doing everything that I can do to be a long-term survivor. But there are no guarantees. Even the doctors can't tell me how long I have. At least mine say that. Only a dick would say, "You have to 1-3 months." Right? They don't know. No one is a statistic. I'll keep doing what I can to control my health, but unfortunately, we can't control the cancer.

So, yea. That's pretty much been my week. How 'bout you? Actually, if I look at it in total, Sunday and Monday ROCKED, and nothing can take that away from me. So, there's that.

Of course, I'll keep you all updated on the Next Steps once we make decisions. and the ball gets rolling. At the moment, I plan when to start Week 2 of the training plan for Couch to 5K, keep on jogging, keep on jogging...And imagining pick out a wand with my Dear Sara in March. And looking out the window at the scenery along the Rhone in April.  And there's probably gonna be some chemo and other medical stuff in there, too...but I'm not going think about that right this second. 'Cause Schmoopy and I just took the dogs on a walk through the vineyard for a little bit, and I think I'll take a nap. It's so muddy out there, I might have to wait for my next C25K workout, though.

Remember: Life is happening Right NOW. Don't miss it.