The One in Which We are Untethered Out from Land

When I was young, I sometimes thought that I was a little playing piece in a humongous world/game and the inhabitants of that world would watch my life and make changes to my destiny, just to see how I would react ...and this was WAYYYY before the movie Truman Show was written and produced, so I would say someone ripped me off and demand royalties or something...but I think many of us had that idea. In fact, I vaguely remember reading and talking about this phenomenon in a philosophy class in college. I think it has an actual name and shit...anyway....I kinda feel like that way lately. Well, let's look at my recent Recurrence that followed a wonderful series of events. <--- click here if you missed that one. But if you want the cliff notes version: blah blah blah...all these wonderful series of events happened and then WHAMMO! after a MRI, I found out my disease was progressing. It was almost like someone was playing with me or something.

This past week, I had another lovely series of events also [not to be ocnfused with the young adult novel Series of Unfortunate Events - that is defnitely NOT a bunch  of lovely series of events. (Talk about truth in advertising!) By the way, I strongly recommend that series for your kids, between about 10 -14 , but it's bleak and dark at times in a Roald Dahl-ish sort of way.)

ANYWAY, my last week had a series of some lovely, lovely bits in it. So many, that I can't even write them all, but for example:
some of our SKW Winery Friends & Family Circle generously offered for us to stay at their beach get-away, where Schmoopy and I were able to stay for  a night and walk along the Pacific Ocean,

Walking to the beach.Not to worry. The temperature was gorgeous, but I'm always a little cold.

hand-in-hand, and, watch the waves crash on the shoreline as a few (crazy) spring breakers actual dipped in that f-f-f-reeeeezing water. {Kiddies: a little lesson: Pacific Ocean - cold,umm....pretty much all the time and Atlantic Ocean - warm and swimmable in March] When we reached the end of our walking trail, Steven exclaimed, "I think this is Rio Del Mar Beach! My grandparents owned a shop right here....called Pixie Plaza...Right about....THERE!" And there was the place, name changed to Pixie Deli, but still kind of a kick, don'tcha think?

That's a good little bit, right?

That weekend, I had my 5K Run, which I have also written about and you can read more about it here<--- or cliff notes version: I felt AWESOME, participating in my first run/race since my diagnosis 19+ month ago!

I've run marathons, half-marathons, 10K's, but this one kicked ass! It was only 3.1 miles, but it was a big "FUCK YOU< CANCER!" that felt so goooooood!

This was some joyous bits right there!

Sunday, most of my kids were be able to drop by on Sunday morning, April was able to make it with our granddaughter, Autumn. What a treat! 

Cuteness alert: Autumn is walking to Grandpa..or....

 and ...a different configuration of our family,  but still would probably be almost a "quorum" dropped by last night for dinner. Happy, Happy, Joy! Joy!

Sun, and vino, and a walk through the vineyard.

I'll stop posting pictures because it would be obnoxious to go and go on...and you've got the point already. This past week was filled with so many "Joyous Bits" and then....

Monday was my visit with UCSF Day, including the first MRI since I've started my new clinical trial.Fasting blood draw (put in the IV then in anticipation of coming back for my infusion, assuming the Dr. gave the okay), MRI, blah, blah, blah, Doctor's visit to review the MRI scan and blood results.

THWUMP! <---Ninja being punched in the stomach again. The words we wanted to hear: "stable" was not uttered. Instead, we heard "progression of disease" and "recurrence". Due to that, I am no longer in the trial.

Some of you may wonder where the "Out from Land" moniker came to our homestead from Steven. It comes from an Emily Dickenson poem:

Exultation is the going

Of an inland soul to sea

Past the houses, past the headlands

Into deep eternity!

Bred as we, among the mountains

Can the sailor understand

The divine intoxication

Of the first league out from land?

― Emily Dickinson

(You'll have to ask the Lit. major for all his connections and meaning.)

When I think about it...I try to visualize us on a ship and picture us looking out at the green, green hills and valleys of vines....like an ocean. If you gaze to the horizon, you can see the sunrise and sunset, but it's magical to be surrounded in this space. Am I lost? Am I lonely? No. There's the horizon and all that between leading us there. And yet we're untethered at the moment.

Maybe you askAm I okay right now? I don't know where we're going next. We have a lot of research and talking,  thinking to do. 

Picture me on the deck of that ship  Listening to the water lap "thwap" thwap" "thwap" against the hull of the ship .- looking out into the horizon for those "joyous bits" in this series of events they call LIFE.

P.S. If there really IS a humongous world where somebody is playing me like I'm a game piece...move on to something new, okay?

The One in Which I Give Props to My Friend, HOPE

I'm playing my #cancercard liberally here as I find that my memory is declining a skoche <---(that's a real word that I learned from Steven, and I'd say to Google that Shit, but it took me some time just to find out how it really is spelled. What does it mean? How 'bout a smidgen?)  Anyway, my point is that sometimes I can't remember if I have already told some things to some people. I would be smashing as an Associate in the Department of the Redundancy Department, don't ya' think? (See, I think I already used that cheap joke sometime in a blog post here...#freepass. Hellooooooo! It's me. I have brain cancer. (#sorrynotsorry if I start an ear worm with Adele's latest breakout hit. Will you forgive me if I don't make another parody video and post on youtube? I thought so!)

Back to the point of all this. I know y'all or most of y'all know that I have been through a pretty shitty phase when I learned the MRI results showed disease progression. I wrote about it feeling like I had been punch in the stomach, but after some more processing, I think a better analogy is more like ...when someone a person (or dog) knocks you completely on your ass by running into your legs full-force. And at the moment, you have lost your ability to stand up, let alone walk away from where you are. After about a week or two of laying in bed and finding myself sobbing with what seemed to me like no new trigger. I was like stewing in a melange of sadness and anxiety.

I have been talking with a counselor pretty much since my diagnosis, and that's been super helpful. But my Self looked around at my crumpled tissues and lack of productivity for several days and declared, "We're gonna need a bigger boat." (Reference to scary movie of my day, Jaws. I've actually never seen the whole movie because I'm already afraid of sharks. True Story.) After some of this got really boring (and a little scary), I said, "Self? Self, I think you might be actually depressed. Self, I think you need more help."

As the first step, I reached out to my medical team and asked for a referral to a psychiatrist - very common for patients in my situation. Go figure! (Kiddies, I hear you saying "DUH!!" even if you're whispering it behind my back. I forgive you. You're right.)My new doctor prescribed a medication to help with my symptoms. Part of the problem wasn't just textbook "depression", but is insomnia because I couldn't stop my mind from spinning, thinking about what's going to happen next, and as you all know - that's a DANGER ZONE for someone in my situation. With the new meds? So far, so good.

I also said, 'Yo'! Self! You have an ginormous SUPPORT SYSTEM, and they are there to SUPPORT you. DUH! Reach out to someone! IDIOT!" This hit me while I sat in the CVS parking lot waiting while Steven picked up one of my many meds. So,  I picked up my phone and called one of my support system. I'll allow her anonymity - and say emphatically that just 'cause I did't call you, doesn't mean that I don't consider you part of my support system.

The person on the other end of this call...She is a fellow Warrior who battled Stage IV breast cancer. She had been where I am right now. We have the same sick gallows humor. BONUS! It sounded like we were talking a language that only we understood for the moment. She knew exactly what to say even though I blubbered in a way that she probably had NO IDEA what I had actually said. One thing that really popped like a bubble in my mind...she said, "You had a shitty, shitty week last week. Brush it aside and move on. You are starting a new week." Kiddies, if you are a caregiver for someone right now, take notes. Because that was magical. Acknowledgement and validation of my pain, fear, anxiety...wrapped in a big ball. And yet reminding me that you can move away from that. It can be different.

There I was, stuck in a hole, and she helped me out of that. Thank you, thank you, thank you Anonymous Warrior Friend! It reminds me of a TED talks video that my daughter once shared. It's a good one!

I've learned a huge lesson from this experience. I have so many lovely, supportive people in my life. Ask for help. Reach out for those hands . They want to help you through those hard times. So many people offered to help! But I'm used to being the helper, not the helpee. I guess I'm a slow learner.

Today is the best day I've had since that MRI Shock Day.  The worst part was that I've had a lingering feeling like I couldn't get back emotionally/mentally that I was before. The MFBCFNW. Where was the WARRIOR? Was she being a slacker? What was missing? Today I realized what I didn't feel: HOPE. Anyone slogging through these kinds of situations, has an old friend, HOPE.

Let me clarify this: I don't believe that having Hope when you diagnosed with a terminal illness is the same thing as Denial. Our old friend, HOPE, is the warm, reassuring friend that can embrace you when you need and say, "I'm here for you. I'll always be here for you." Today, I looked around and there was our old friend. It's like the personification of the positivity and love that my friends and family send to me through their thoughts and feeling. It flows to me and envelops me., embracing me with warm, reassuring arms, whispering, "I'm here. I"m always here for you. Don't forget that...No matter what anyone says, anything about statistics and odds and discussions about life spans...I'm here for you."

In my family , we have a tradition.(I think this comes from my maternal grandmother.) When someone is in a crappy situation, someone else might pat them on their head and say, "There, there." Sounds so simple, but in that small gesture and phrase you get: acknowledgement, validation, and the warm embrace of "I'm here for you."

I know it's complicated for someone who has never experienced the situation of being diagnosed with a terminal illness. I can't speak for everyone, but I will say for myself. I've been thinking a lot about what I really WANT so I can pass this along to you that are confused. If you want to help the ill continuing to feel HOPE, please don't act like their fate is a "done deal" - even if they are saying things like "I know I'm going to die..." Don't feed that part of their thinking. But the flipside is: don't say things like, "You've got this." or "You are going to beat this thing." I know, it's hard and counterintuitive. And again, I'm just speaking for mySELF, and I never said it all made sense.

So, what can you do or say?

• Hold them or pat them on the head and say:"There, there." or....
• "I'm here for you. I'll always be there for you."

It's very reassuring to know that our old friend, HOPE, is still there.

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Obligatory, gratuitous picture of my granddaughter, Autumn. She has been sick for over a week and still oh, so cutee!

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.