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 I Ask What You Would Do

I think Steven and I are still ..."adapting' to the news we got that I had a recurrence in my brain cancer. It's "easier" now that we've made a decision about which option of treatment we'll be pursuing. Or I should say have already begun pursuing. On Wednesday, we received a calendar with all my appointments that have already been set up with UCSF for the next few months. It's reassuring in a way - for a Type A personality especially - to know what is expected on our schedule. But we're still in the very beginning and have no idea if this new protocol will have an effect on the progression of my disease at my secondary site. We are on Cycle One of a 28 day cycle. Day 15, I have a fasting blood draw, then a Neuro-oncologist appointment. If the numbers from my blood draw are okay, I have my "infusion. After six cycles like this, I will just be having the Infusion Days and no Chemo Days. (I think that's right. Sometimes it's hard to keep all the details straight.)

I've already joked about this on Facebook, but I'm only partly joking. I didn't know exactly what the Infusion was going to be like, exactly...but now I know that is NOTHING like a spa treatment (and if it's on the menu of any spa you visit, DON'T choose it!), and there are no tropical drinks included with little umbrellas and the scent of pineapple or coconut - or lime, even... <rip off!>

Hey, I thought you said "cocktail"!?!?!

It's basically a drug being "infused" through an I.V. tube into my blood stream. I'm so used to being poked with needles, I know which arm is the better one with the preferred vein. (Anyone who has had/has a condition that requires a lot of blood labs, etc. is nodding his head in understanding right now.) That day, I begin my 5 day chemo cycle - pill form - at bedtime. At first, I thought, "No big deal...no real nausea with the help of Zofran and the magical MM, etc" and the most reported side effect from this other drug is eye irritation. I felt okay. Meh. Not too bad

The next day; however...I've never experienced anything like that. I've been "tired" before - really, really tired before along the way of this 16 months of initial treatment. But with this new "cocktail", I felt like someone had injected some kind of heavy metal into my bloodstream. Maybe it was like Ironman? But truth be told, I've never gotten into that franchise, so I don't think he's as lethargic and lame as I felt at that point. If I'm totally misrepresenting that character....#freepass #braincancer

What I'm trying to describe is that It required tremendous effort just to sit up or lift an arm or leg. And it wasn't like sleepy, like I had experienced before. The usual prescription for my chemo side effects were not helpful - lots of napping and binge watching on Netflix and Amazon Prime. So, I lay there like a lump. I think I was a lump. A lump o' June. Not feeling very Ninja-like at all.

Picture Ironman all rusted and creaking out: "Oil caaaaan....."  like the Tin Man of the Wizard of Oz. NOT like the Ironman triathlon endurance competitors. Does that clear that up?

Let's just say that it was not fun. That pretty much covers it all.

My clinical trial calls for a second infusion on Day 15 - which will be tomorrow, Monday, February 22nd. Without a chemo pill chaser. So....who knows what I await! Like Cracker Jacks! OOOOH, a surprise in every box! Not as tasty, but the prizes in the box now are just stupid. right?

I've not broached this subject on this blog much, but anyone in a situation like this - not just the patient, but the whole family - inevitably has conversations about "quality of life" versus "quantity of life".

Steven have had several deep discussions on our daily walks lately. And it brought me back to something I thought from the beginning with my diagnosis. That was the birth of The #mfbcfnw! Raawwwwrrrr! I don't remember much about the first few days home from the hospital after my craniotomy, but I do remember sitting on my sofa, with my oldest, April, sitting next me. She was noticeably pregnant (due in March '15). There aren't really words to say to your child in that kind of situation. but I remember saying, "I'll fight this as hard as I can. I want to be there to see your baby...." <sobbing, of course>

This what makes this situation right now particularly fucked up to me. Because I DID fight and fight and fight. And Mother fuckers, I have survived for ...almost 17 months beyond my diagnosis! I'm planning on attending Autumn's first birthday in March! Wooooot! I'm feeling a little Ninja-ish right now!

But I'll admit, when I first heard the news about the new growth in the secondary spot, I was a mess. Lots of sobbing and shell-shocked, really. And in my head, I was thinking,  Am I going to be like aRusted Ironman the rest of my life? Where's my Mother Fuckin' Brain Cancer Fighting Ninja Warrior?

I kept thinking over and over...."I really thought I'd bought myself some time."
An interesting twist of words. "bought myself some time". Well, my doctors would say, Yes, you have. You did everything you could do. This disease is just a GINORMOUS MOTHER FUCKER. <(---I think that I added that last bit.) But I'll continue to do that which I can control over to try to give myself a few more weeks, months, or years with my family and friends. I will juice and drink combinations of kale/spinach/cabbage/romaine....(it's not as bad as you think - REALLY!) I'll continue to walk every day that is feasible - except my Ironman days (if I should have more of them)

And my brain-cancery mind has thinking about it...what would YOU do to "buy yourself a little more time"? And the thing, we ALL have evidence before us that tells that we CAN. No, there's no money-back guarantees, but why do we all ignore so much scientific evidence that we're shown that if we do X-Y-Z, that it helps us to prevent certain illness or medical condition that decreases our quality of life. And yet...and yet...

we don't do those things.

Kiddies, I'm not pointing fingers, and I'm not counting myself out of this phenomenon. 

Yes, death can be completely random. You could go out today and just get hit by a bus. Boom. No warning. But would you step off the curb onto a street without looking both ways if something was coming in your direction? I'm talking about a little itty bitty change that could contribute to preventative steps.

I really don't want to have this feel like a lecture. It's not meant to be lecture. Like I said, I've just been having this stuff bouncing around in my mind.

If there was ONE THING that I could leave behind today is to have you think about your life and what you are doing now. What you value. What you would lose if you were tragically diagnosed with a terminal illness. What would you do to "buy yourself more time"? My answer right now? Almost anything. To see my granddaughter's second birthday? To be there when one of my other children got engaged and went to a wedding attire shop to pick out their outfit...and I could be there? OR watch them walk down the aisle...graduate from college or earn a masters degree...

Or the smallest, smallest  things.... I was doing laundry this morning, and I was hanging up one of Steven's shirts. It's one that he has a tough time getting the collar "just so" over his tie, and he always asks me to fix the back of the collar to cover the tie. And as I hung that shirt, I thought. What if I don't ever get to do that again?  I'm not making this up. This went through my brain cancery mind this morning. 

So, yea. You can be sure that this #MFBCFNW is still fighting. RAAAAAAWWWWRRRR! 

No gratuitous picture of my granddaughter because I'm headed out to see her in a little while, and I'll take plenty of pictures then! So, come back later to see it! 

The One in Which I Explain My Paradigm Shift

The last two blog posts have given you an idea about the shocking and shitty news I've learned within the past week or so. I have had some reservations about writing about what I'm going through. In my head, I'm saying, "Am I betraying my readers that look to me for inspiration?", Then I decided remembered this blog has always been 100% No- Bullshit and completely Authentically June's Voice and Thoughts Territory.

*Money back guarantee  - Nevermind that this blog is totally FREE!

So...

In case it wasn't clear to some of readers, I have always believed that I was going to die from GBM. It's always been a matter of when. I'm not going to dig through my previous posts to find proof that I've said that before. This disease is called The Terminator for a reason. I had some things in my favor to make my survival rate better than some Warriors, and it is true - I've survived over 16 months, better than the median survival rate for GBM patients. Yay, Me! This 16 months  has been filled with ....well, LIFE! Ain't it grand? But I just seemed like flyingggggg!

Unfortunately, this latest MRI results has turned everything on its head. As an inoperable tumor that can not be treated with radiation at this time--->Note: surgery & Temodar with radiation - three very helpful "weapons" in a battle against GBM. My standard options are  now: two kinds of chemo that have been deemed less effective than the Temodar, the one I've been on the last year or so) or three potential clinical trials. For the uninitiated (and kiddies, I hope you are one of them, because that means you or someone you love have never been ill with a disease for which research scientists are seeking a cure) Clinical trials are the protocol that drugs/treatments have to go through before they can be approved as safe and effective by the FDA. These trials go through phases 1,2, etc. to find the right dosages, etc 

The latest direction cancer cure research is headed is called drug "cocktails" - a combination of drugs like they used (eventually) to find a way for people to live with AIDS. There is a very interesting movie online about this "new-ish" direction for cancer fighting that's free to watch online Surviving Terminal Cancer. <----- Just learning more about Ben Williams, kind of rockstar in the cancer fighting community is worth just the click. Promise!

The book is good, too, but the video is fascinating.

So, after many agonizing hours of crying and talking with Steven, we have decided to participate in a clinical trial for brain cancer. What I want you to know about this:

1) Of course, we would love to have the best possible outcome from this treatment  - complete remission with a minimum of effect on my quality of life.

2) If I don't experience a remission of the disease, we hope for at least an extension of my life span. And the reality is, given my current situation, we are probably talking months - not days or years right now. Sorry to be the bearer of that shitty news. Of course, the doctors can never KNOW know, but this ain't their first rodeo, either. I believe that some people can beat the odds, and I know I'm not a statistic. But I also think it's important to be prepared for the possibility...and

3) Worst case scenario, at least I've helped with the progress to help future GBM and other cancer warriors.

 And that brings us to the paradigm shift to which I referred. After my first round of treatment- my first "battle", I think of it - I thought I had a chance to catch my breath, take a victory lap. It was not to be. The last week I've been so fragile, "I thought that I had so much more time.....so much more time...." <I've whispered that under my breath so many times in the last week.>

Given the change of circumstances, my focus has shifted.  I have not changed one iota in my feelings about appreciating life and finding joy in it - to FIGHT for all the moments that matter and realize that we need to treasure them. The Ninja is still there, no doubt!

The difference, I guess, is recognizing that we have to think about what moments are really important to us, and try to make sure they happen. If you thought that you had an indeterminate time, or for sure decades ahead of you, you might just trust them to chance. I can't afford to trust chance. Not just appreciating our lives, but recognizing that we're MAKING our lives every day in some ways.

You might imagine that this is an intense and emotional phase for me. If you do, you are right. And I'm sure you have rather figured out already from me that these "moments" I'm thinking about making are not a list of places to visit and experiences to have like bungee jumping in Vegas... 

It's.....everyone? everyone?

Friends & Family 

<gold star for anyone that said that right along with me!>

OR...