Living Beyond The Color Pink...... an organic, evolving journey.: "Just Be Happy" - let's explore!

Cross Posted

Hey y'all... it's me...


Here is my latest blog post.  I hope this post will help shed some light on the myriad of emotions I feel living with Metastatic Breast Cancer.  It was very cathartic to write.  I am so grateful for everyone who reads, shares, comments, and likes my blog.  This journey would be so lonely without all of you cheering me on every day.


Peace ✌

Jo



Living Beyond The Color Pink...... an organic, evolving journey.: "Just Be Happy" - let's explore!: Hey y'all... it's me... Happy February!  LOL... I am reaching for anything I can to bring me out of the doldrums of winter, gray ...

"Just Be Happy" - let's explore!

Hey y'all... it's me...

Happy February!  LOL... I am reaching for anything I can to bring me out of the doldrums of winter,
gray skies, dirty snow, and cold ass weather.  I am currently cruising along on the MBC roller coaster, adapting to the a new rhythm once again as I get comfortable in IV chemo.  I won't bore you with all the details, it isn't anything exciting - fatigue, nausea, no appetite blah, blah, blah.  I have had a LOT of time to think - oh shit, that is not a good thing.  When I start over working this brain and over thinking and over analyzing.  We all are in trouble!

Everyone has advice, it's a natural human instinct to want to help others who are in need or suffering in some way.  I get so much advice, from the crazy out there shit to the simple, "just be happy".  Damn if only it were that easy.  Let's talk about this idea "just be happy".  This piece of advice can apply to anyone, sick or not, suffering or not, "just be happy". Well, if it were that easy and we all could flip a magic switch - I know a few dozen or hundreds of therapists and counselors that would be out of a job.  But it isn't that easy and for those of us with MBC, for some of us at least, it really isn't easy.

I know that I should be celebrating every day I wake up and my eyes open and my lungs take in breath.  There should be champagne flowing, music playing and instead of walking to the bathroom each morning, I should be dancing my booty all the way to the potty.  OK, let's turn off the Hallmark movie and slip back into real life.  I do wake up and as I assume butterfly pose, I do say "today I am grateful for my breath"  but then as I turn to my side, I hear the snap, crackle and pop of my bones and I begin to take slow, cautious steps toward the bathroom, anything faster than a snails pace and I would most likely fall over.  My body has to warm up, like an old, well loved classic car.  While all of this is happening, my brain starts to do a mental inventory of how my body is feeling - what side effects will I have on my plate today and are these the only things I will have on my plate.  I am not complaining, well maybe a little, but I am trying to paint a picture.  I miss the days of flying out of bed, heading into a workout, eating something yummy and then moving on to a plethora of 15 "to do" list tasks.  But I have said that before.

I think I am suffering a little from cancer envy???  What the hell is that?  I am making this up as I go so bear with me.  I hear many stories of "only 3 more rounds of chemo, only 4, 2, 1 and now I'm done" and I think to myself holy shit balls - this will never be me! It's like forgetting something super important that is life changing and then all of a sudden remembering it again.  That will never be me, I will never be done.  Fuck, that sucks!  Don't get me wrong, I have known this all along, I have written about it many times but sometimes life takes over and you can forget.  I don't know if forget is the right word but you can cope without thinking too much about it but then you begin a new phase, IV chemo, and it all comes rushing back to you.  I will never be done until I am literally done with living.  Well that's a sobering thought.

I am beginning to feel that my days are that of a hamster on a wheel, going round and round, not getting anywhere, not able to plan ahead, not able to fit in with the cool kids anymore, simply circling my little bubble of life.  I always said I will not be defined by MBC but in reality MBC does provide some definition to my life.  The definition in itself isn't bad, MBC has shaped me, changed me and allowed me to evolve but it also has limited me, haunted me, and stolen from me aspects of my life that I can never get back.  Sometimes it is those losses that I mourn and I think that is why the simple "just be happy" is more complex to put into practice.  And then there are the seasons where waves of people are dying daily from this disease.

"Just be happy"... I want to say, "don't ya think I am trying?"  I am not missing out on the meaning of my life, it's just so complicated.  I want to "be happy" but I have all this shit I carry around.  I want to forget the shit but it is always there and once again I am finding myself walking on that tight rope.  I am balancing hope with reality which makes me balance being happy with being weighed down by the disease and its baggage.  I honestly don't know if I am making any sense but I guess what I want to say is this... To the person giving advice to anyone "just be happy" isn't that realistic and to the person receiving the advice "just be happy" try to understand the givers' intentions.  They only want to see us pain free and enjoying life.

Part of what helps me cope is being active in various MBC groups however with that I learn of the many who die from this disease every day or I hear stories of hospice and how it affects everyone when that decision has to be made.  Recently someone that I knew peripherally passed away.  We were not close and I will not exploit her death but it did get me thinking.  With each passing of a person with metastatic disease, someone is left behind.  There is the obvious, the persons family and friends who are mourning their loss.  But there are also those who are still living with this disease, those who still have side effects, drug interactions, sadness, anger, hope, triumph.  How does this affect the loved ones of those who are no longer here?  And how do we, those that are still here in the trenches, not feel some guilt?  I guess it would be a sort of survivors guilt.

This is why I said my brain is over thinking.  Too much time indoors, shielded from the cold and dreariness of winter isn't always good for the soul.  I don't want to give up, that is not what I am saying.  I feel guilty for still having options - that is the catholic in me and I also feel envy towards all the success stories I hear of on a regular basis.  Success stories of stable scans, being done with chemo, cancer free parties and NEAD status.  After 7 months of one failure after another, one bad scan after another, I am finding it so hard to hear the good stories of triumph.  Does this make me a terrible person?  Does this make me shallow?  Should I go to confession - probably!  I think it is the fear of losing that brings on the envy.  I cannot help but compare my situation to others out there and as a wise person once told me "comparison is the thief of joy".  I should listen to her, I really should.

Oh the complicated web of emotions that surround MBC, it is a maze I find myself walking through

daily.  I really need someone to be calling out my name as I go, in order to help me find my way, like a sick and twisted version of Marco Polo.  I don't want to get lost in the chaos of MBC and there is a fear that I will be forgotten.  Just writing that makes me feel super vulnerable, like a kid waiting to get smacked with a dodge ball.  I want to keep going, I want to be that Suzy sunshine person always believing in good things happening, I want to live longer and find a treatment that works.  I want so much yet the one thing that I want most - to never have been diagnosed MBC in the first place will never be possible.  We can't go back, no time traveling, only forward momentum!  That's what I keep telling myself as I sit and wander the maze.

So in the meantime, I am going to work on the idea of "just be happy".  I am going to have hope the Doxil will work, I am going to limit my expectations and be kinder to myself.  At least this is what I tell myself today, in this moment.  I will wander the maze as I navigate the complicated web of emotions I am feeling, I don't think I will get lost but I hope if I do, someone will come looking for me.  MBC and all cancer is a lonely place to hang out, it is my family, friends and Team Jo Jo that helps me crush that loneliness.  And for that, I am grateful!

Peace ✌

Living Beyond The Color Pink...... an organic, evolving journey.: Switching Cancer Gears - Again!

Cross Posted

Hey y'all, it's me...

I hope
y'all didn't forget about me, it's been a long while since my last
blog.  It has taken me some time to pull these words from my brain as so
much has been happening.  I hope you like this latest installment and
as always I thank you for reading, sharing, commenting, and being part
of my Team Jo Jo family.

I hope the New Year is greeting you with joy, love, and laughter. 

Peace and Blessings,

Jo

Living Beyond The Color Pink...... an organic, evolving journey.: Switching Cancer Gears - Again!: Hey y'all... it's me... JoJo... yep... it's me, I am quite literally shaking as I sit in front of this very blank screen.  I...

Switching Cancer Gears - Again!

Hey y'all... it's me... JoJo... yep... it's me,

I am quite literally shaking as I sit in front of this very blank screen.  It's been awhile, my friends, I don't think I even know what to say or where to start.  I guess I will start with this... cancer is fricking hard, hard as balls!  So I guess let's start from where we left off, pondering existential questions of being happy and living in joy, is all of this crap worth it, and embracing my A/A combo therapy.  Well, I am just gonna chuck that shit right out the window because cancer done blew up again and everything went to hell in a hand basket.

Since my last blog, I have had not one, but two blows of progression.  The A/A combo therapy failed and with that came progression into more bones and the little fuckers infiltrated my liver.  Then I started on Xeloda, a systemic oral chemotherapy for 8 weeks and just found out on December 27th that Xeloda has failed me as well.  The PET scan showed increased bone progression again and the tumors in my liver have grown exponentially.  I think the report read something like "innumerable foci throughout the liver can be seen".  Well hot damn, now the fuck what???? 

First the treatment plan - I will have a liver biopsy on 1/15/19 to reexamine the cancer cells.  We are looking to confirm if the cell is still ER/PR+ HER2-, sometimes in MBC, the cell will mutate and change origin.  This could be the reason for the numerous treatment fails I have had recently.  I will then have my "chemo education" which is basically like Lamaze class but for cancer and learn all about the new chemo I will begin on 1/17/19.  This chemo, Doxil, is IV infusion chemo, a quick drip - YAY - and supposedly I will not lose my hair on this chemo - YAY again.  Not that that is the most important thing but it certainly helps ease the blow of this latest round of progression.  Doxil is administered every 4 weeks and after 2 rounds, we will scan again to determine if it is being effective. I am quite positive Doxil will come with it's own set of delicious party favors that I will get to deal with but I will face those as they come.  At least that is the nonsense I am telling myself!

I am not going to lie and say that I haven't struggled with all of this.  When the first news

of progression came, our family imploded.  I felt like I was walking through the aftermath of a zombie apocalypse!  We all were affected and we all fell deep and hard into hell. So began the deep dark depths of November.  I was in a bad place, dark and scary, lonely and terrified, facing my mortality and what that truly means.  John was in his own deep and dark scary place, he wasn't working, he pulled out his back and even ended up in the hospital.  Needless to say we can add financial stress to the cancer game again.  Poor Jack - he just had to deal with this in his own way and then my girls... shielded in a sense by distance but I am sure feeling just as scared, helpless, and alone as the rest of us.  So how did we cope???  Angels on Earth!  So many angels who swooped in and helped us navigate each day, each task, each moment, and always reminding us that we are not alone in this journey.  I was just beginning to pull myself and family out of the deep hole we were in, I remember saying sometime around the middle of December "I think I can do this again".  The light was beginning to shine again and I felt that my world wasn't as dark as before.  Then...

I was finishing up my last round of Xeloda and looking forward to Christmas with my kiddos.  I was looking forward to the scan on the 27th as I really had high hopes that the medicine was doing its damnedest to fight back the cancer.  I envisioned a scenario of hearing good news, a stable scan, and more of the same type of treatment. I envisioned a brightly lit 2019 full of good news and grand plans. The last thing I was prepared for was more progression and an imminent future of IV chemo. 

I painted a picture in my head, my own version of reality and it was that picture which was allowing more light into my world.  The picture gave me hope again, I began to rely on it and view it as my own version of what would be happening.  The world according to Jo Jo!  So when this picture disintegrated with each word coming from Dr. K upon the results of the 12/27/18 PET scan, my world became dark once again.  It was like standing still and then being sunk into pitch black, I couldn't find my bearings.  How in the hell am I going to do this again???  I am once again pulled deep into that hole.  I am like a leaky faucet, crying way too much, water spontaneously dripping from my eyes. And once again, it is our Angels on Earth helping us navigate the treacherous landscape we find ourselves standing within. 

This showdown with my mortality brought up many questions, many fears, and only a few

answers.  It is a work in progress that I think will ebb and flow with my treatment, my success and also my failures.  The idea of facing life without me was something that took John out at the knees and to be honest I wasn't doing so hot with the idea of no longer walking this earth.  My faith was shaken and everything faded to black, all I could hear was static.  I was angry at God for allowing this to happen and not hearing my pleading for help.  I was angry that bad things kept plaguing us and couldn't see the positive amongst the darkness.  I began to fear death, I mean really fear this idea.  I asked John to put a nightlight in with me when the time comes as I don't want to be in the dark. I am so afraid of being in the dark.

I am a person who likes what is known in life.  I need a few dozen questions answered just for simple things like moving to a new town, or changing banks, or visiting a different city.  I said to my therapist - heaven isn't like Idaho - I can't go visit and check it out and then decide if it is a place I am comfortable with spending eternity.  That is literally my mental thought process.  I want to know what is it like, what is it going to feel like, what if I have no one to talk with, what if no one sits with me at lunch?  Now before everyone panics - I AM NOT PLANNING ON DYING TOMORROW!  However, when switching off of targeted pathway blocking therapy and moving into systemic IV chemotherapy it takes the prospect of likely living decades off the table.  I am not going to say what the new statistic is, just know that it shook the fuck out of John and I.  So now I am doing my damnedest to bring the light back into my world.

What to do, what to do, what to do???  Well to begin, I need to hone in on my artist skills

and begin painting a new picture.  A picture that is fluid, one that changes in the moment, from day to day.  I need to sit back and allow myself time to grieve without letting this cancer consume me.  It is a difficult task to explain and an even harder one to execute. I think on this first day of 2019, I will begin a gratitude practice.  Going back to the beginning of finding even the smallest flash of happiness even when having the worst of all days imaginable.  My therapist told me to look for the consolations in life instead of focusing on the desolation of my journey.  I need to go back to starting each morning with "I am thankful for my breath and my eyes opening today". 

There is a balance of beginning to process what will be, surrendering myself over to my Faith, while at the same time not letting go of one ounce of my gumption!  I ended that sentence without saying "without letting go of the fight within me" because I don't like viewing my cancer journey as a fight.  I am trying to look at it with peace and love but also come at it with both barrels, not letting go, not giving up, still seeking hope.  It is a mountain of a task, this balancing act.  One that I am still very much a student of, learning each day, through each high and low.  

So for now my friends, I will leave you with this.  Never take a spark of sun or drop of rain for granted.  Don't be afraid of asking for help when you are low and celebrating with those same friends when life is high.  Hug you babies, your partners, your puppies, smell the flowers and sing loud in the car.  These are just some of the things I worry about missing, that sounds silly, but this is part of my surrendering, learning that it will all be OK, all will be OK!

Peace ✌

Jo

Living Beyond The Color Pink...... an organic, evolving journey.: Cancer - the Mental Mind Game

Cross Posted

Hey y'all... it's me...

Here
is my latest blog post, it feel like so long since my last post.  I hope
y'all will continue to read, share, comment, like and spread my words
as I can only hope it helps others whom are walking a similar journey. 

I
will never be able to say thank you enough for all of your love and
kindness.  So I will humbly say I am grateful for each of you, for the
time you take to read and for your continued good thoughts and
blessings.  Thank you, Thank you, Thank you!

Peace,

Jo

Living Beyond The Color Pink...... an organic, evolving journey.: Cancer - the Mental Mind Game: Hey y'all... it's me... More and more time is flying by between my blogs and I wish I could credit that on the huge amount of li...

Cancer - the Mental Mind Game

Hey y'all... it's me...

More and more time is flying by between my blogs and I wish I could credit that on the huge amount of living I am doing every day.  However it seems to be the exact opposite, I am stuck in a cycle of doing instead of being.  I have been hit by the side effect bus and to be honest, I think the bus ran me over a few dozen times starting in June but it took me awhile to connect all the dots.  One could say, I am wee bit slow on the wit these days.

All of this excitement happening to me and around me is making me ponder a few questions.  One - is it all worth it and Two - can a person who is facing trauma and distress ever feel full and complete happiness.  Now it may seem as if I am going all existential on your ass but I promise you, I am not, well - not completely.  It is only that I am finding myself deeper in thought these days as I sit a spell and wait for the side effect bus to pass on by. 

Is it all worth it???  Now I know that at this point you are saying "hell yeah it is!" and of course I am going to agree with you for the most part.  Everything is worth it for my family and my babies and then there are my beautiful friends, my community, myself! But these last 5 months have hit me pretty damn hard - I am plugging holes in my leaky broken bones, as soon as I get one under control another leak springs open and something else is causing chaos in my body.  It is a fucked up game of Twister I am playing - me against MBC.  In this case, I really don't feel anyone is going to be the winner.  The latest and greatest is a mouth ulcer the size of a small island town. It has pulled me off my chemo in order to allow it to heal.  It has pulled me away from food, anything solid that is and it has caused an exorbitant amount of pain.  It has prevented me from talking - gasp!  This particular blow from the side effect bus comes on the heals of dancing an off beat rhythm to my chemo combo.  For whatever reason, I have not been able to get in tune with my affinitor / aromasin combo.  For each day, I feel good (ish) there are 4 or 5 or 15 I feel "meh" or pain, or feverish, or more pain. Once the sore heals, I will start my A/A combo again and then we get to wait and see what happens.  There are 2 scenarios - the side effect bus will hit me again with another sore or I will be spared that particular collision. 

As each treatment brings on new, fun and oh so pleasant side effects and the blows begin to get harder for me to deal with; I wonder if I have the muster for what my future holds.  I have said it before, each new treatment will become harder and harder on my system and with that I will have to find more and more inner strength to withstand the storms.  This is where I begin to wonder "is it all worth it?"  MBC is a disease that has a huge variance in life span - average is 3 years however I know of many that have lived 5, 10, 15 years.  But to what cost is it on their mind, body and spirit?  Will I be able to handle what the future holds in store for me?  I know, I know I am time traveling some, I guess I can't help it with how I have been feeling lately.  My light is dimmed right now, some of my get up and go has got up and gone and I am working at finding it again. 

Do you know that game "would you rather?"  Would you rather have a mermaid tale or claws for hands?  That sort of thing.  Sometimes I feel like would I rather continue forward with each new treatment, twisting and turning to plug the leaky holes from side effects or ride off into the sunset with no side effects but less time.  For me, the game "would you rather" is not one I could ever play, I would be an indecisive, wishy washy pain in the ass.  When I look at my MBC and what I am feeling both mentally and physically, I think I could never choose to ride off into the sunset - not at this point at least.  It isn't time for such a drastic, intense, important decision.  So where does that leave me with the question of "is it all worth it?"

I think it leads me back to square one.  Maybe I need to try to take up yoga again so I can be extra

bendy and twisty for my never ending game of Twister.  But seriously.... I think the answer to this question is somewhere in my mind, back to changing the narrative but also changing the expectation level.  As I am writing this blog it is exactly one year, six months, and one day from my MBC diagnosis.  And as I can say that I have grown and evolved, I think I also have been riding my expectations pretty damn high without even knowing it.  I want peace in my heart, peace around me, peace, love and light for everyone I love.  However, for the one person I should hold with the most grace, love and light - myself - I think subconsciously, I have been expecting that I should be as strong, as vibrant, as full of energy and stamina, and as robust as I was prior to my MBC diagnosis.  That's pretty fucked up!  And unrealistic if I were being hands down, straight up honest with y'all! 

The reality that I have been pushing back on hard as balls, is that my meds are some seriously strong ass shit.  All of my meds, MBC meds, migraine meds, meds to off set the side effect bus from all the other meds; they all come with a price on my body.  It is time I accept that price, maybe bargain it down a little, but still find a new set of expectations that keep me from feeling as if I have failed repeatedly.  Here is the tricky part and again I will say this is the mind fuck that MBC brings to the table - there is a fine line between the balance of lowering the exceptions in order to find success without completely throwing in the towel and giving up.  And the MBC roller coaster circles back to practicing balance, this is something I worked on early on in my journey.  It's funny how most things in our lives are circular, we all come back to the same puzzle again and again.  Balance in mind, body and spirit.  Now - that I have that figured out, I sure as hell would love it if someone could tell me how to actually BE that person!  Come on y'all, I can't do this all by myself... it takes a village!

Can we (any person who has a traumatic disease, disorder or something tragic in their life) ever feel true and complete happiness again?  This is the other big, deep, burning question that comes to mind every now and then.  It started with a picture I recently saw of myself.  It was from a few years back when I was celebrating my cancer free life - HA! little did I know what my future held.  In this picture I was laughing and smiling and there really was a sparkle in my eye, I look at that picture and I see happiness, true and utter happiness.  When I saw it, I looked at John and asked him if I would ever feel that again?  Sadness fell over me like a deep gloomy blanket.  I began to wonder about this idea of happiness vs joy.  Which one is a state of being and which one is a fleeting emotion that ebbs and flows with our lives? 

I think, and I am certainly no expert, that joy is something more of a state of being.  Joy is the feeling you have in your mind and heart, even if something sad is happening to you.  To me, joy is being able to see the light at the end of the tunnel, the positive in the negative, the hope in the ruble.  Happiness is an emotion that flows over and through us as our lives evolve, ebb and flow, and organically change.  Happiness is seeing something beautiful, laughing so hard you want to pee your pants, a fiercely tight hug filled with love.  Happiness is your kids coming home, eating solid food again, or seeing an old friend.  Joy is nothing and everything at the same time.  It is feeling that it is all worth it, it is holding on tight without giving up, it is knowing that there is a community holding you up in spirit and allowing those feelings of pure joy carry you through the times happiness isn't flowing your way.  Joy is something more nebulous to me, it is a feeling that must come from within without a tangible act to react too.  I know, I know, it sounds like I took one too many tokes on the happy pipe.

While I sit here and type, I am thinking of something I recently posted.  I said, each day is a win for
me. That sentence, that one simple sentience is something I must not forget.  Each day is a win, cancer affects so many, young and old, babies and kiddos, moms, dads - no one is immune and as they continue to follow their path, I must continue to follow mine.  For right now, it is all worth it and part of my homework is to find that sparkle again.  To twinkle amongst the debris that cancer deposits in my life and my families life. And to never allow cancer to dull my shine because damn it... IT IS ALL WORTH IT!

Peace ✌

Jo

Living Beyond The Color Pink...... an organic, evolving journey.: Changing the Narrative!

Cross Posted

Hey y'all... it's me...

Everything
in life is all about perspective and narrative, I hope you enjoy my
latest blog post about my journey through this crazy cancer world. 

I
know I mention it often and I will say it again; thank you for taking
the time to read, comment, like, and share my blog and my FB page Team
Jo Jo.  I am so grateful for everyone who is coming along on my journey,
without y'all, my days would be lonely.

Peace,

Jo

Living Beyond The Color Pink...... an organic, evolving journey.: Changing the Narrative!: Hey y'all... it's me... Here's a little something I wrote... Oh fatigue, how I wish it could say it’s nice to see you aga...

Changing the Narrative!

Hey y'all... it's me...

Here's a little something I wrote...

Oh fatigue, how I wish it could say it’s nice to see you again 

You tempt me with your sultry softness, edges smooth as a favorite memory 

You whisper to allow the darkness in under hooded eyes without thought or consequence

Oh fatigue, do you not know what you have stolen 

Moments as sweet and simple as dripping sand through an hour glass 

A rhythm of the mundane set to the everyday sounds of the heartbeat within my home

Oh fatigue, I know the fault is not to be laid solely at your feet 

You come on the wings of the necessary burdens to heal the broken body 

A slip between the veil that holds us within this earthly life

Oh fatigue, your strength is mighty yet not as such of a determined soul 

The barter begins as a give and take between two accepting participants 

Lay your blanket over the fallen only when the white flag is raised 

Oh fatigue, do not allow your pride to swell and overtake the brave one as she knows when she must submit 

Her soul is strong, her mind is a force 

She will accept your will in order to save her existence.

I wrote this one day while sitting outside in less than 5 minutes.  Sometimes it works that way, one word forms into two and then three and more and the next thing I know, I have a piece of written work that wasn't there but a few short minutes ago.  I wish I could say the same for every time I write, I think it depends on what is happening in my world.  In this case, I was a few days into my new treatment, Affinitor / Aromasin (A/A) and working on accepting that my chemo break was over.  I have accepted I will never feel quite the same pre MBC diagnosis, I have accepted that all my treatments come with some form of collateral damage, however that doesn't mean I don't mourn and grieve as my life continues to evolve and change.

Shortly before I began my new treatment A/A, my friend Anita and I went to visit our friend Adrienne who recently moved near the Finger Lakes in NY.  OK, so I took a trip, not too big of a deal except the MBC setbacks I endured this summer have knocked me a bit off my axis.  I'm quite like a scared rabbit, holding my breath a little too long, waiting for what is going to spook me next.  But something amazing happened on this trip, something unforeseen, unimaginable for me, something that reminded me of why my journey, my daily job of thriving is so important.  I saw God's Amazing Grace and the grace of 2 friends who stepped back, held my hand literally, waited for me to catch my breath, didn't judge or push, encouraged me, laughed with me, and just let me take it all in.  We climbed this gorge - I didn't even know what a gorge was - all I knew is that Adrienne wanted to take us to see some waterfalls.  I assumed we'd drive, pull off somewhere, get out and walk to a rail and get back into the car.  Man, I was mistaken, it has a very happy ending though so it's all good.  We did drive, and get out of the car and headed toward the sign that said "gorge path" and then we climbed up and up, so far up, that I was pretty sure Jesus was going to meet me at the top with a welcome basket.  The girls were talking away, not breaking a sweat, and there I was panting like a rabid dog, struggling with most steps, sweat dripping into places that are simply not proper. The terrain was wet and slick at times, steep at times, level at times and so high.  Between my poor vision and my cancer, I was at a major disadvantage.  

And the narrative in my head began to shift, the self loathing talk started, the little cancer bitch jumped up and perched herself right on my shoulder bullying me to stop. I even said at one point that I wished I had a shirt that said "I'm blind and I have cancer, I'm not capable"!  The girls looked at me and we laughed because when I am most uncomfortable the self deprecating jokes come flying out of my mouth left and right but then they said "it doesn't matter, who cares what anyone thinks, you're doing it"!  It was shortly after that, I was able to sit alone for a few minutes.  I closed my eyes in prayer and asked God to help me quiet my mind and see Him in everything around me. I prayed for my cancer treatments to work, for my family and friends, for my doctors and nurses.  The narrative began to shift in my head and with a quick and swift hip check, I was able to knock the cancer bitch off my shoulder and feel the energy, the spirits, and God all around me.  It will be a memory I will carry forth with me on this journey as I was able to feel, in that moment, that anything is possible!

I am now almost 2 weeks into A/A and I will say this treatment is harder than my 15 rounds on Ibrance.  I think back to how scared I was when I began this whole journey, how fearful I was of the first round of meds and now I can look back and say to myself "if you only knew how good you had it".  It's funny how the perspective can change from holy crap this treatment sucks to oh well that wasn't so bad after all.  I have often said each treatment will be a little harder, harsher than the last, it is the nature of shutting down living cancer cells.  Cells that are so smart, they are able to mutate, grow and evolve to work around the medicine that I am taking into my body, medicine that will hopefully lull the cancer back into a dormant state of quiet peaceful sleep.  

There is an ebb and flow to living life with MBC.  I'm currently flowing with finding a new rhythm on the A/A and continually working on the narrative in my head, my job at thriving and finding balance of life and living.  So many friends have stepped in to help me work through this transition.  Renee will just pop over to chat and hang, Tammy scooped me up for a little ice cream break, Eileen and Vickie moved their night hanging out over here, Liz and Mary are always checking on me; these little acts of love and distraction are what makes the dark and scary times somewhat easier to handle.  I know it seems silly but it makes a huge difference in a very unsettled life.   

I try my best to blend in, be one of the gals, like everyone else but there will always be a

distinction.   Sometimes I feel like the picture, which one does not fit... but that is in my head, that is the narrative I'm working on.  I think it is because I live the daily grind, sometimes I wish there was a documentary of this journey, showing all sides, the give and take, the pep talks I mutter to myself, the constant negotiations, the trials, the triumphs and the failures.  It is not for pity or victim status that I want this, I simply want people to understand more of what it takes out of a person who is on a struggling, up hill journey, any journey.  If I need to attend an event in the evening, I have to rest for hours beforehand.  If I have a long day of appointments, then my day will be cut short in the end.  It takes a lot of smoke and mirrors magic to pull myself together but when I do, I can say I feel almost like my old self again.  

This A/A gives me a thick blanket of fatigue most days, it keeps me guessing because it can show up at any given time.  My skin is dry, I am winded easily and sometimes making the bed tires me out.  The hardest times are in the dark, the late night hours when I can't sleep, I might be scratching my skin off or simply uncomfortable with fever and pain.  At those times, when my spirit is weak, I have to dig the deepest.  I allow myself to feel all of it, I let the tears flow and just cry.  I cry for what I have lost, what I will lose and for no longer being like everyone else.  I cry because I am still sleeping when my son leaves for school, I cry because I have to have "the talk" with teachers, coaches, and his counselors reminding them of what my son sees and faces each day.  I cry for my girls whom I miss so much.  I often say to John, I just want to be that person I was, the one who danced on a table, drank too much wine, and wore skinny jeans.  Just one night, I want to dance on a table again and forget all about not blending in.

All the while, I will renew, re focus, rest, and re gain my rhythm to this MBC dance in good time.  Each morning, I remind myself of that feeling I had when I was sitting in the gorge, anything is possible!  My body will adjust and adapt to the A/A and my doctors and nurses will help me balance the side effects in order for me to have a quality of life that allows me to feel as if I can still Thrive.  And Thrive I will my friends, because what other choice do I have, but to whisper back to the cancer bitch "it's not your time to shine, it's mine"!  

Peace ✌

Living Beyond The Color Pink...... an organic, evolving journey.: Journey Interrupted!

Cross Posted

Hey y'all... it's me!

It's
been a bit of time, sure hope you haven't forgotten me.  Here is my
latest blog post, a long over due entry but a LOT has been going down
around here.  It's probably not my funniest material, a few tears bled
into my keyboard but that's ok, it's all part of the journey.

I
am forever thankful and grateful for all of you who read, share, and
especially comment on my blog and Team Jo Jo page.  Some days, those
little bits of love are what makes the world shine a wee bit more. 

Peace,

Jo

Living Beyond The Color Pink...... an organic, evolving journey.: Journey Interrupted!: Hey y'all... it's meeeeeeeee! WOW!  I am actually a little afraid to sit down and begin this.  It's been too long my sweet old...

Journey Interrupted!

Hey y'all... it's meeeeeeeee!

WOW!  I am actually a little afraid to sit down and begin this.  It's been too long my sweet old friends and I am so flippin' sorry for being away.  Everything just turned upside down for awhile and I needed to dig deep, so deep that I couldn't make sense of anything that was happening, let alone find words, thoughts or emotions to convey in print.  I know a lot of y'all who follow my Team Jo Jo page on FB know what's going on but for those who don't I'm going to give you a brief summary and I think the rest will fall into place.

Sometime around the beginning of June, the MBC roller coaster took off for an endless run of twists, turns, and upside loops that had everyone spinning.  We all are still shaking out our heads and bodies trying to gain purchase on solid ground again.  So... I began to feel pretty shitty, something was off but transitions can be somewhat difficult for me to process and we were moving into summer, school being out, new routines etc so I didn't want to give these shitty feelings too much attention.  Then the pain began, right in that sweet spot near my ass, those darn iliac bones on the right were causing me grief something fierce.  I thought maybe I was just overdoing things, I thought maybe it was the meds.  I had a lot of bone pain going on in that area and down my legs and then I had a fever.  It was beginning to feel eerily similar to when I first started dancing with MBC.  This led to scans, images, tests and BAM - the dreaded P word.  Progression!!!!

I was diagnosed with new lesions in several areas on my thoracic and lumbar spine, the head of my femur, and both hip sockets.  There were also enhancements in most of the already cancerous bones on my spine, iliac, sacrum, and pelvic regions.  Well shit on a stick.  Bye, bye Ibrance, you served me well for 15 rounds but now it's time to move on to the next treatment plan.  This is where things start to get a little dicey.  The next treatment in line was Faslodex.  This chemotherapy was to be administered via 2 injections in my bum every 2 weeks for 6 weeks and then monthly.  We also decided to do 10 rounds of radiation to my right iliac and sacrum to help alleviate the worst of the bone pain.  OK, sounds like a fair plan, I thought!  I was none to happy with all of this attention being given to my ass but I came to terms with the way things were going to be and plunged ahead.  I had the first of the shots on June 27th, then the nausea set in and man was it bad!  I began radiation on July 2 and each day I felt more and more like the shit that was dragged under a car.  The nurses, techs, everyone kept telling me I just had to get through this initial phase and then things would get better. Well, things went from bad to worse, I began to break out in hives, just a few here and there and again the nurses were saying that this was just my bodies way of assimilating to the new drug.  Well one hive turned into 2 and then 20 and then what felt like a gazillion and yep - you guessed it - it was determined I am allergic to Faslodex.  I am in the 7 out of 100 people who this can happen too.  I just love being so special.  So at this point I am covered head to toe in hives, I am on a shit ton of prednisone, it looks like someone blew me up like a balloon, I'm exhausted from radiation, exhausted from all the Benedryl, I'm itchy, bitchy and witchy! I'm not eating from the nausea, I'm not drinking - it's a shit show starring me!
For the last 2 months this has been my life!  MBC knocked me flat out and I was not ready for that, not one bit!

I'm not sure what I had expected to happen when I took my first Ibrance pill back in May of 2017.  Actually that is a bold face lie.  I thought I would be on this drug forever, I mean I already had metastatic breast cancer and that was a total out of the blue fluke so of course, I am going to be that outlier who is on the same line of treatment for the next 100 years.  I mean of course that's going to happen!   Well, that SOOOO did not happen and it flabbergasted me!  The audacity of this MBC not playing out how I had envisioned it in my head - WTF cancer!  I would read stories of women on their first line of treatment or stories of women who are living 5, 10, 15 even more, years with MBC and now I had to face that I wasn't going to be this miraculous story of Ibrance taking me into my glory days.  Not only was I done with my first line of treatment, I basically skipped over my 2nd line (thank you allergic reaction) and was being educated on my third line of treatment.  WHAT??????  I literally said "what is happening?". 

While I was sitting in Dr. K's office week after week, bloated, red faced, scratching my skin off I felt like I was in a dream.  At one point John told Dr. K "you need to understand, Jo has a checklist in her head and on it are however many treatment lines she thinks exist, each time she has to move on, she's checking off her list and she's worrying about how many are left."  How right he is, I guess being together for almost 30 years really shows when he can read me so accurately.  The revelation of "oh yeah, that's what this disease does" kept smacking me in the face over and over again.  I fell deep, hard, and fast into some scary thoughts.  I cried for hours.  I blamed myself which is irrational.  It's stupid, looking back I feel so dumb!  This isn't a fairy tale, this isn't a movie, there aren't a group of writers editing and changing the story to suit my needs as I walk along my journey.  Of course progression is going to happen, that is the nature of Metastatic Breast Cancer, it becomes resistant to treatment, it changes, mutates and progresses which leads to changes in treatment, new therapies, new chemo, new, new, new.  My job is to go with the flow, adapt, adjust, start over, plan, and adapt some more. HA!!!! That is about as foreign to me as traveling to Mars!   These past 2 months were some of the hardest months of my life.  I can honestly say that.  They may get surpassed in time but for now they take the cake.

I have lost one quarter of 2018!  The entire month of January - GONE due to my MBC and

now both June and July - POOF! GONE!  I will never get them back and for someone who doesn't know how long their existence on this beautiful earth is, I don't feel I have much time to simply let disappear.   My journey was abruptly halted, interrupted by this progression and at times that makes me steaming mad and profoundly sad.  I was doing so well living a thriving life, adjusting to the ibrance side effects (which in hindsight are nothing relative to what could be to come) and knocking out life list adventures. I practiced being present in each moment as often as I could.  Where do I go from here???  How do I begin walking again without shrouding myself in a steel cage, attempting to protect myself from any additional mental harm?  I don't recognize the person staring back at me in the mirror!  I have a lot of work to do on healing, forgiving, and accepting.

I have emerged from this progression a different person.  I am rounder, think Mrs. Claus, I am slower, think Tortoise, and I am shyer, think Piglet.  I am more humble than I thought possible as I have been schooled by MBC.  I still carry a sense of peace in my soul and a deep faith but I am a little less trusting at the moment.  I have been reminded once again of my mortality. 

I posted on Team Jo Jo recently that there is no where to go but forward.  A deeply true statement in the literal sense however this interruption has stunted my movement.  I am learning to walk this journey again, in a new and different way, not better or worse, just different.  I am seeing fear in my blue eyes, in the eyes of my children, my husband, my family, my friends.  We all took a bit of a beating with this one, I think it's going to take a quick minute to settle down again.  My hope is that we can learn and grow from it together in order to be better equipped to face the next interruption, the next detour a little more calmly, a little more rationally.  I don't know whom I'm kidding, I am a strong willed, loud, emotional Italian who doesn't like being told what to do!  Chances are the next interruption will be just as shocking as this one was and I will be cursing, crying and and hollering all at the same time.  

While all of these blurry days were fading one into the next for me, something remarkable was happening around us as a family.  I am once again reminded of the kindness of others, our family and friends, our community, FB friends, and even strangers.  A circle of love was quietly, deftly, and swiftly draped around us, it was immensely powerful.  I don't think anyone knew how hard John and I were leaning on this circle, we still are keeping it as our crutch.  From meals, messages, fundraisers, chauffeurs, hugs, kisses, kleenex, and strolls, you each carried us on your shoulders as we fell off our path for sometime.  We still are stumbling, a bit drunkenly and we know that you will be right here to catch us when we trip.  We have so many angels with us on earth and above that I can't help but feel less alone.  This brings me a sense of peace.

On August 1st, I will begin my third line of treatment - Affinitor and Aromasin.  I tell myself these pills will do their job and close the cancer pathway once again.  I am back to nightly meditation, acupuncture, healing touch and reiki, hypnosis, and daily exercise (if you can call it that) to enhance my conventional meds.  I am working on the foods I eat, I've changed so much in that respect but will never claim to be perfect.  I am a work in progress on that front.  I am in the process of looking for a naturopath to add to my care team to even further treat my disease.  I will continue to work on strengthening my Faith in God, reminding myself that He doesn't promise we won't suffer but promises that He will be with us along the way.   I have a new mantra I use often and is literally posted throughout my house "My body is full of rich and healthy cells". I have begun reading Radical Remission - slowly - but I am doing it.   I pray often not only to God but I talk with my parents and now my sweet Aunt who taught me what true Faith and strength look like everyday.  If only I can have 1/10 of her will, I would be forever grateful.  I have often said every cancer diagnosis should come with a personal secretary so please know I am trying hard to manage my messages and appointments. I get a little foggy, a little forgetful, but in my heart I am always thankful and filled with gratitude.  

For now, I will heal, I will shine, I will THRIVE once again for there is no alternative I will accept.  Cherish your days, your moments, even the little mundane things for you never really know when things will get turned upside down.  With the greatest of love and warmest wishes the saga will continue.  Let's meet again soon my friends!


 Peace ✌
Jo

Living Beyond The Color Pink...... an organic, evolving journey.: Hope, Reality, and Being Present

Cross Posted

Hey y'all... it's me...

Here
is my latest post, this one has been ruminating for awhile, I don't
know why I didn't push send a week ago.  A lot has been going on, we all
have that especially during the busy summer months so I am grateful for
all of you who read, like, comment, and share my posts.

I
don't think I would be sitting here today without all the support,
love, and prayers that come my way.  Please know I am sending it all
right back to each of you every day.

So thank you again for being here ad for making me smile every day.

Peace,

Jo

Living Beyond The Color Pink...... an organic, evolving journey.: Hope, Reality, and Being Present: Hey y'all... it's me... I feel a need to add this preface for y'all who lovingly read, share and like my posts.  I know that...

Hope, Reality, and Being Present

Hey y'all... it's me...

I feel a need to add this preface for y'all who lovingly read, share and like my posts.  I know that some of my posts venture towards the dark and scary places in life, the places we most often run from or feel the desire to stick our heads in the sand when these subject comes up.   BUT... I want you to know this is NOT where I live 100% of the time.  Y'all are just the lucky ones who have chosen to walk this path with me.  Sometimes, I want to take a video of me laughing or dancing and being goofy so y'all can see I am not Gloomy Gus all the time.  This is simply a snip-it of my life and while I feel the more urgent draw to put pen to paper when life is tumultuous or my mind is active and overthinking; I also don't feel stories of the lost sock in the dryer, the crazy dog who acts like a goat, or the 16,000 trips (no lie) back and forth to the swim club are quite as riveting.  Those times are when I am feeling pretty much like plain 'ole Jo, living the dream of kids, home, family, and boring old life - which is where I live 95% of the time. 

This particular post is one I actually wrote the old fashioned way, pen and paper.  The words began to swirl so fast and it was an evening when I was already propped up comfortably on my bed.  While I couldn't stop the words, I also couldn't summon the strength to walk down to my computer - yes, that is correct, I am the last man standing without a laptop or hand held device.  I am old school, I sit straight backed in my office chair, typing away on a keyboard at my desktop computer.  I'm a dinosaur - I know - but there's also the matter of necessity.   So instead, I frantically searched for paper - you know the vintage type with lines and everything and then needed to find a pen that wasn't exploding or crapping out.  Here is the transcribed result.  Enjoy!

OK so it's a cold, rainy night and to be honest it's been a hard few weeks.  I experienced my first real loss of someone I knew to MBC and it hit me like a mountain slapped me twice.  Sometimes, I think it's important for you to allow the crash to happen, let yourself FEEL the sad, mad, and scary. Stifling it isn't going to do anyone any good, it will probably result in increased stress, hormonal breakdowns, and ulcers and when you're done cleaning up that mess, you will still have MBC and some of the more unpleasant emotions that go along with it.  I'm a little OCD so in my book, it's a more efficient way for me to handle things - Can you say CONTROL ISSUES!  On top of the emotional crash, I am feeling every ache, twinge, pain and yelp from my broken down bones.  Mother Nature needs to get her shit together and knock off the rain, cold, and high swings in temperatures around here or she's going to have one pissed off Italian screaming at her pretty damn soon.  

I am not going to give power to the image I saw in my head at the service.  Use your imagination and then you might understand why I crashed head long into a puddle of mush and self pity, fueled by fear and anger, loss and sadness, with a sprinkle of hot mess on top.  But I also think it is the season that was getting to me.  Spring is the season of hope - new life, new beginnings, opportunity opening, and the world blossoming.  It is the season of graduation, celebration, weddings, moving on, moving up and forward.  Everyone is taking another big brave step toward the future.  "Mother May I... take one giant step of accomplishment and one small step toward living out my dreams.  And Mother May I responds to the masses - yes but to me she says, you may stand here with one foot up in the air, balancing, halfway to moving forward but one foot must stay planted on the ground!"  What the Fuck Mother May I????

Wanna hear a secret???  I am afraid to know but not know anything bad.  Now you must think I am drunk but I'm not, so bear with me.  A long long time ago, about a hundred years or so, I was at a party and there was a psychic doing readings, tarot cards and palms.  Cool right??  UMMMM no, not for me.  I believe in everything spiritual, I have had feelings and visits, messages from beyond, I believe in ghosts and angels.  I believe in the power of the mystic and the truth and peace it can give us on this earth.  BUT... it's a big BUT... don't be flipping a card or tracing a line on my palm with doomsday news.  I have never wanted my future read for this reason, I don't want to know the bad.  Lalalalalalalala - that's me singing over the psychic's words.  I don't want to hear anything bad about my future.  Except I have!  My V8 moment came after talking with a friend.  My fortune has been told, a little at least.  The only difference is instead of the fortune teller wearing red silk scarves and robes with rings on every finger, he wears a white lab coat and is someone I put my faith and trust into everyday.  Dr. K!  Dr. K has let me in on a secret that I didn't want to know, the "probable known of my death".  Now yes, maybe I will get hit by a bus, run over by a flock of geese, or choke on chocolate chip cookie but in reality I know a little more about my potential demise that the average Joe.  In fact, anyone who has a terminal diagnosis has been let in on this secret and that's some heavy ass shit to handle.   

There has to be something good that comes from this knowledge.  Sometimes, I will tell you I don't have a fricking clue what it is and others times I will say it is the power of information.  I have this power to do whatever I can to keep the known at bay.  But this is where the shit gets tricky!  I ask myself what else can I do, I take a powerful drug everyday, I get shots monthly, quarterly, I drink elixirs but what else, what else can fill my bucket of hope?  This is where I have to be careful, our minds can fuck with us as much as help us.  I think it's the rearing of the nasty Cancer Bitch that pushes me towards chasing hope.  I am a puppy chasing every leaf and my mind continues to whisper, "yes try this, you need this, do more of this" until you close your ears and scream STOP!  I think this is one of the reasons Dr. K has always cautioned me from searching my disease on the internet - it's a scary, dark world out there and who knows what will be uncovered.  

I have MBC, that is a known.  There are so many differing beliefs on how to stave off this disease outside of conventional therapy.  I have been told to try oils, floating, salt caves, eating oranges, lemon rinds, dandelions, this or that diet, so many supplements that my pill container needs a back up container.  It's been suggested to go to group therapy, find a MBC support group, don't find a support group, energy work, fasting, hypnosis, art therapy, lotions, potions OH MY!   Now to be fair, I do some, a lot of these.  I have carefully chosen what speaks to me to fill my bucket of hope and I always keep space for something new. But am I missing something?  Everything comes with a price, not only monetarily, but physically, emotionally, and spiritually and this is where having this known can be so dangerous.  There is so much I can call bullshit on, I do not think eating lemon rinds is going to cure my disease but someone else might and that's perfectly OK. I truly mean no offense to anyone for whatever type of treatment they pursue.  It is all about what we can and are able to believe in, what works for one may not be the perfect fit for someone else.  I have to be very careful not to fall prey to chasing hope.  It is a fine line, doing everything I can, having my bucket full to the brim and without dangerously sacrificing the actual art of living now.  


There in lies the balancing act, standing between both worlds, living present and mindful, adding to my bucket of hope all the time with something new, something old, something borrowed and something blue but also never looking back on whatever wasn't chosen.  This is fact, there is no one thing that will magically cure my cancer.  Every outlier who lives beyond the statistics has their own unique treatment therapies but also their own unique set of DNA, cells, lifestyles, and family history that makes up their own set of circumstance.  There are no two that are the same, if there were my story and the stories of countless others would be so different. So what to do, what to do????  I don't have the answer to that.  I am still working on shutting down the spiral of the past few weeks and I realize it isn't going to be any one thing that will snap me out of this funk but the main, most important reality, is that I continue to work at it - I continue to remember my job of living. Yet I am afraid I am not living enough.

Another added caveat - chasing hope is always something more powerful when your body isn't cooperating.  This post has been hanging out in the preview queue on my computer for over a week now - for some reason I wasn't ready for it to go live.  Since then, my low back has flared angry and irritated.   Dr. K is away so a lot of pain meds and a scheduled MRI for next week awaits me.  In the meantime, I wonder - what is this, what should I do, maybe the lemon rinds will help!  Should I try this or that, is this something, nothing, old age or cancer waking up and stretching it's hairy cells and getting ready to wreak more havoc in my life.  Is it muscle, is it bone, is it an alien from mars who took up residence in my low back just to annoy me!  I will drive myself batty wondering, don't think about it, people say.  Don't worry, people will say.  Don't let it envelope you, people will say.  And all I do is fail each and every person who tells me these kind and thoughtful pieces of wisdom.  I try to not think but every time I move and the bones in my low back cry out for me to stand still, it is a whisper in my ear. This is a glimpse of that reality. 
I often say I am in the middle, on one side I am holding hands with hope and on the other, I am holding hands with reality.  Sometimes I may be more focused on one or the other but the BEST time in my life is when I am focused straight ahead, living within the beautiful space that is present.  There will always be moments of reality, I can't take that away.  It may be painful for some to face or simply too scary - I understand that feeling.  My hope is that there will also be many more moments of hope and even more moments of just being me.  

Peace ✌