There's So Much I Wanna do...

There’s so much I wanna do

I just got some of the best news a metastatic cancer survivor can get. No evidence of active disease in my scans. Yay. 

Why is it so hard to celebrate, to truly absorb that deep in my bones, where it builds sparks of momentum, takes over and then in turn releases out to the ethers in bursts of pure joy. That’s how I imagined it would be. 

I almost had that feeling the FIRST time I got that news.  And that’s why it’s not there now. I know from experience the reality of this shitty disease.  I think I would get that orgasmic effervescent joy if the oncologist said, Nanette, guess what, there’s no active disease and there never will be and you can stop treatment and you will live as long as you are naturally supposed to live which is really old.  Then I would feel it.  

So - I think about dying sooner than I want to, and though I refuse to live in the precious present moment with regrets and chagrin, my head is spinning wildly with the overwhelming feeling and knowledge that THERE IS STILL SO MUCH I WANT TO DO. 

I don’t want to feel like there’s not time and I don’t want to live with bucket list energy. 

But there are so many things.

I’ve never been to Oaxaca

I’ve never sang in a pop/punk band like Cub & The Muffs, I would’ve been so good 

I’ve never owned a home in Marfa

I haven’t visited London enough

I haven’t met Mick Jagger

I’ve never had the body I wanted, although I probably did and didn’t know or appreciate it, thanks eating disorders and diet culture

I’ve never lived in LA

I’ve never sang Never Going Back Again with Jeff Berkley around a camp fire at Kerrville Folk Festival 

I’ve never lived in my dream mid-century modern house

I’ve never had a dinner party in my house 

I’ve never led a yoga retreat for survivors 

I’ve never owned a Rolex 

I still want to have my house designed by a designer in true Mexico house color explosion 

I still want to see the Stones again 

I want to see all my great nieces and nephews go to school and know me

Theres’s more, people, there’s more, but it’s becoming a listicle and it kinda hurts to dive deeper into some of the personal things

So because I love my life and because I want to honor and reflect on the jubilance of the life I have and have lived, here’s that list - and trust me, this makes me maybe even more emotional and it’s painful,  but good lord it also helps

I’ve seen the Rolling Stones more times than fingers on one hand (thanks mom and Wayne)

I grew up in the most amazing city  - London, thanks mom & Dad - it shaped my entire life, culture, taste and my penchant for musicians, a lifetime affliction/joy. It also gave me the best friend in the world - Claudia P

I’ve seen the great water fountain in Geneva

Stayed in a chalet in the Alps

Eaten warm baguettes on the streets of Paris

Ate Wienerschnitzel in towns along the Rhine (yes, believe it or not, there was once a time I wasn’t vegan - the horror)

Got lost in Leningrad/St Petersburg and terrified my mom

Eaten fries with mayonnaise in Amsterdam 

I’ve owned Miu Miu shoes - 2 pairs actually.  wish I still had them

I’ve gone on epic solo road trips that made me feel free and beautiful 

I’ve visited Mexico all my life - it’s half me, thanks Papa 

I had a great and fun marriage, which in it’s wake gave me a best friend in my ex

I married a rock star and went to the Grammy’s 

I have 2 of the coolest most creative amazing kids and I actually raised them and they are adults - this is the biggest blessing - my young MBC friends don’t have that guarantee and it makes me want to scream for weeks 

I have incredible friends all over that have shown me love and support in ways I didn’t know existed and it gives me hope and its taught me about receiving 

I’ve had a pretty fulfilling successful career that I figured out how to love at some point 

I’ve been to some of the most fucking amazing rock shows, some huge and many small - I remember some in such detail - Cub & The Muffs at Electric Lounge, Imperial Teen at the Troubadour, actually all three of those  bands anytime I saw them. I can’t even begin to list shows, just know it’s an epic list starting at 11 when Gary Numan changed my life 

I’ve been to Wimbledon

I’ve had some great lovers (sorry mom and kids) 

I bought a house all by my little self 

I rode the Rattler at Six Flags even though I hated it with all my heart 

I’ve had perfect bangs - thanks all my hair artistes 

again - I gotta cut it off, this isn’t my life story. This was exhausting but I’ll tell you a secret, I cried for 2 hours remembering and writing and listening to music and now I’ve stopped.  I haven’t cried in a hot minute and I needed it, and also I needed to move through it and this was the medium

I don’t really know how to end this so I’ll do it this way

The end 

The What If Moments

WTF with the What if?

I’m (very slowly) reading Eckhart Tolle’s The Power of Now.

I read it in snippets and paragraphs here and there, mostly because each bit blows my mind so much and I have to close it and contemplate for a while.

Currently I’m in a beautiful Arbnb in my favorite place, Marfa TX, while on a self imposed writing retreat with my friend Tara. I picked up the book on a little writing break and of course, yet another thought provoking moment occurred.

Tolle asks the question - are you worried? are you having many “what if” thoughts? Then proceeds to explain that there is no way to find a solution or to cope with that future situation because it does not exist.  He further explains that the only things we actually have to cope with are right now, and that that is doable.  The suggestion is to take some breaths, and get back into this present moment for that is all that is true.

I do actually truly believe this, but oh my god, how freaking hard this is for a person with stage 4 cancer? how do we not worry about getting sicker, dying, the process of dying, what our kids and family will do after our death, how they will cope, how sad they will be, will it hurt…and on and and on. It almost feels like we MUST worry about these things in order to plan, and arrange, and prepare our minds and our lives. 

But truly, thinking this way is suffering.  Another incredible writer who I’m also reading little by little is Viktor Frankl his book Man’s Search for Meaning - in it he says that suffering itself is meaningless, and when I step back and observe all of this, it is meaningless, it makes no progress, it provides no relief and solves no problems.  The stress from it is even detrimental to health 

So, I stop to breathe, to take in the view from my window of the vast west texas sky, and my fave restaurant Bordo, I feel the bliss and contentment that is this present moment, and I realize that letting go of “what if’” is freedom.  I can’t plan to die, I can’t plan to make my kids not sad, I can’t fix scenarios that don’t exist yet. it’s madness and debilitating to even consider.   I choose freedom, I choose present moment. 

But…Sometimes the present moment is unbearable, painful, what then? The biggest urge is to run, do anything you can to escape from it.  Maybe at times escape is the best thing, I’ll be honest, these are sometimes the times I play mindless match games on my phone. 

But more and more often in those moments, I acknowledge, I choose acceptance, or take action, or trust that all will work out, and turn to love and faith. It’s really all I can do. And guess what, it does pass, I can cope and mental suffering diminishes.

Just sometimes the taking actions is Best Fiends for 20 minutes, just sayin’

2 Years

This morning, May 13 2024 as I write this, I got out my journal to do some morning writing and accidentally opened the book to May 14th 2023 - it was mothers day - and that entry was so full of pain and angst. It surprised me.  That’s not my common state and it was also 1 year in, it read like a post from the begining days of stage 4. But I spoke of the exhaustion of 1 year of of living this way, 1 year of DAILY waking up to a life with stage 4 cancer, of making health decisions, of discerning which healing path or modality, of keeping sprits up, of worrying, of seeking joy. I wrote of feeling sludgy and heavy and tired. I expressed overwhelm, turmoil, exhaustion and disbelief that my life was such a roller coaster managing all of this.  Ok this is scary to write, but I also wrote these words “I can’t find the will, the reason for living today, the thing that makes all this worth it, when will it stop? when I’m dead? Right now that sounds easier” 

I almost can’t believe I wrote that and felt that, but I’m glad I did. It makes me emotional to read, but it feels good and it’s important to be reminded of all the aspects of of this diagnosis.  I did find the joy and purpose again and not long after that I took my first plane trip in a million years to Costa Rica for that first Compass yoga retreat and felt so alive and amazing. But this does remind me that I will feel that despair again and I will feel the joy again.  Trust the process and know that spark of hope is always there and the light will come back.  I have to know that to keep me resilient. 

I explore some spiritual teachings with a mentor of mine in Marfa TX and we recently had a discussion about the energy of the mother, how she can hold you in an uncompromising embrace which allows for the surrender, the safety and comfort to allow the feelings to exist, to allow fo the falling apart. I’m not sure that i felt that embrace completely a year ago but I must have to a have allowed those words to flow from me. Now I am much more centered in that energy and am willing to explore more discomfort in order to move through to more and more and more ease. 

I looked back at a previous writing about struggle and ease that I just finished just before starting this post and I wrote about how existence is hard, so it was poignant to be reminded of that hard right now when I feel so much ease. I embrace all of me and all of this crazy experience - I contain multitudes 

the BIG intro

The BIG intro

Hi everyone!

it’s time to kick this thing off and state my purpose, claim my space and update everyone - I started backwards and wrote a post in the moment before I got a chance to intro.

Also this intro is 18 months late - the actual resurgence of Glitter Every Day started officially back in May 2022.

First of all, if you want and and have interest in the full catch up, my archives of my original Glitter Every Day blog posts from Blogger are here to be read.  This was from my 2010 diagnosis of breast cancer when I was 42.  I loved writing them, I love the support and words of love I received from them and sometimes I love re-visiting and seeing what inspired me then, how I coped then. It’s a reminder of my strength and vulnerability during that time and also, vain though it may sound, I can be inspired by myself. I can use some of my old tools and recycle them to this era, things I forgot…and I can be proud of my growth. 

Back to now and the facts.  Back in May 2022, oddly the sane month and I think the same week as May 2010, I was diagnosed with a return of  the same cancer, and this time it’s what known as Stage IV, or metastatic breast cancer.  I’ll explain exactly what this means I’m always surprised that people don’t know, but then most people aren’t in the cancer world like I have been.   Metastatic breast cancer, or any cancer, is when the original cancer comes back or resurfaces, or METASTASIZES,  in a different part of the body than the original site, usually bones or an organ.  Breast cancer typically metastasizes in bones, lung, brain or liver.

In my case they found that it had appeared in 3 bone areas (all left side - rear low rib, 2 lower lumbar and hip), pleural effusion which is fluid surrounding the lung in the pleural space, and a smallish collarbone lymph node/lump.  It was kind of a long path to get to this, starting in March with looking into various things I was feeling, but i don’t feel like detailing that here, I am more than happy to share one on one if anyone is having concerns, but I will say, don’t ignore weird stuff. Back in 2010 I said - don’t ignore boob stuff.  Same thing, bigger deal. 

All i’ll say is that with all of my being I did NOT want to go down the path of seeing my oncologist and facing this reality, anything but this.  The worst fear of any cancer survivor, I became my own nightmare. 

What I will try and do in this space moving forward is  3 fold:

• sometimes post stream of consciousness posts from my heart and current emotions as I am moved

• sometimes go back to my written journals over the past 18 months and speak of the journey in the early days, the growth the learning the incredible life altering awakenings, as these are essential for me to process and to also share

• and finally share some practical practices and insights and tips that work for me

My goal is to heal myself with sharing and processing to hopefully inspire and help others to heal.

Lil secret that I’ll plant right here and will expand on over the months - I’m working right now on an 8 month long certification to be a Cancer Coach through the Cancer Journey Institute, so eventually this site will be a place to also hold offerings and legit support for my community! 

Oh and not to leave you all hanging….I’m doing very well.  I’ve been on treatment, which is oral medications since last July.  I’m on a clinical trial (again I’ll share deets of the treatment on on one or in later posts for info purposes).  I’m responding very well and side effects, although annoying, are thus far tolerable.  I have bloodwork monthly, and more detail bloodwork and CT scans every 3 months to check for any changes.  So far no progression, the bloodwork tumor markers they check for are in the normal range, my last bone scan showed no active cancer there and I feel mostly great!  I work out, I lift weights,  I do yoga, I do joyful things and most excitingly i’m flying again and traveling.

I’m going to do a separate post on my mindset to get to this place of living joyfully as this one is long enough.

I love you

Nanette