Funky Town

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

Day 3 of my Fucked up Funk - and the worst part is, I cannot even begin to tell you why I am feeling this way .  Reality speaks to everything is going well, I am bumping and grinding along to my new rhythm, I am working on some creative projects.  I have felt the love of so many kids (thanks to Miss T) who have been buying and proudly wearing "Team JoJo" bracelets.  I have simply been living life, day to day, mundane task to mundane task - which is something I should revel in because who knows when the other shoe will fall from the sky and smack me backwards.  Sherlock, I think I have just discovered a clue to my puzzle.

There is this expectation that I should be so happy, so thrilled to be where I am currently living with my mets.  I am reminded often that I need to enjoy this now and live for this moment because who knows what's coming.  However, I know what's coming, I have seen it and though I don't know when that something is coming, I know that it is not a matter of "what if" anymore but more simply of WHEN!  Please... before I go on, I know it will seem that I am feeling sorry for myself and to be truthful there is a bit of a party going on in my head.  High heels, tiara's and tea and lonely old me, weeping into a lace handkerchief.  The problem is, I know this, rationally I know the issue, I also know the solution but yet I cannot seem to marry these two ideas together to make peace with the "WHEN".  Deep down, I know that I am still the humble warrior, still a thriver, yet there is a cloud of funky punk that is dimming the light within me - temporarily!  Trust me, John has already pointed out that I am way past my 24 hour allowance and I need to wrap this shit up with a bow and kick it on down the road.

I am somewhat of a misfit, always have been - misfit, misjudged, misused, misunderstood - if there is a "mis" word out there, I bet it can be used to describe me. No, no I am not fishing for compliments, it just is what it is.  I feel the same way now that I did back in high school, there wasn't one crowd that I aligned with.  I have talked before of being the one who was picked on, bullied etc and I rebelled - A LOT!  I feel somewhat like that now, not that I am being bullied, that's not it - just different from others I have met whether in person or via Facebook from the mets community or even others from within my tree of life!  Let's talk first about others within my tree of life.  Every single one of you has my heart, and I am so grateful for all of your love and support.  But let's face it, I am different now and I think I struggle with that.  I feel as if the sand in my hour glass is slowly running out and I don't think that is something most others often think about.  I know you can say, we are all terminal and we just don't know what the future holds, but this is different.  I can't explain it well, it's just different.  This feeling can get me twitchy - like a coffee addict needing a hit of caffeine - I sometimes cannot get it to stop niggling in my ear.

I am asked often "how are you".  I recently was at an event where I saw a lot of people that I don't run into regularly.  It was great, all the hugs and well wishes, the love was pouring over me and damn, I needed that.  I really, really needed that and the funny thing was, I didn't even know it until it was happening.  One friend asked me "how are you really" because often my answer is "I'm OK" or "I'm hanging in" but I looked at her and said honestly, the hardest part is staying positive and grateful for everyday because it can be exhausting. I said to her that the mental mind game can get to me because I just feel so different from everyone else and that is a scary, lonely place to live in.  On the other hand, I told her that writing helps, it allows me to live this journey authentically and with truth and vulnerability which is something people are often afraid of allowing the world to see.  For me, though, I don't know how to do this any other way but to be truthful about what I am going through.  We live in a society of putting forth only what we want others to see, an illusion, you could say.  A magical trick that shows the best, the brightest, the thinnest, the happiest, the most of the most of the most of everything.  Sometimes, this gets to me because even though I know everyone has their own bag of shit in their life, I measure myself up to the "most" of everything and I often come up short. There is a ticking in my ear that can be as loud as a jet plane.  The clock has been set.

And with truth be told, it is hard to face those people who deny my disease or those who say things that make me feel as if I am fighting nothing more than a simple cold.  I know that probably sounds terrible to you and it makes me sound like an ungrateful shrew of a human being.  I feel terrible about myself for being so sensitive, UGH....damn cancer bitch!  I know this is one of those things no one knows what to say or do with - Hell, I don't know what to say or do, what is right or wrong, what is helpful or simply no help at all.  Maybe this blog is no help, I don't know... that is the thing, I am winging it without a net and sometimes a hug and a prayer is the best thing you can say or do.  Sometimes, YOU reminding me that I am still Jo, is the best gift anyone can give me.

Now for the mets community, I think this is why I am being so sensitive and feel so disconnected.   I'm going to say up front, I mean no offense, we all have our opinions and have to walk in the face of our own truth, wherever that may lie.   There is this mindset in the mets community which forsakes the pink ribbon.  It was recently brought to my attention that I may be the minority with continuing to feel an alliance with the pink ribbon.  Yes, there are the politics of the ribbon being used for marketing campaigns and then monies not being donated towards the cause or monies only going toward the rah, rah rally, happy ending stories.  However, I started my sisterhood as a pink ribbon survivor and I have many, many good friends who are still part of that sisterhood and I am so grateful they are still there.  I don't ever want that to change.  I still want people to see the pink ribbon and think about their boobs, or call to make their mammogram appointment, or talk with their daughters or mothers about breast cancer.  I don't think about what the pink ribbon cannot do for me but instead think about what it can do for so many.  There is no room for blame or dislike in my humble path.  I also don't begrudge those who feel anger towards the ribbon.  I simply feel like I don't belong anywhere and I am lost in a cotton candy colored world, yet the color has been stripped from my sight for I am afraid to speak my truth.

What I am left with in the aftermath of this case of finger vomiting - is shame.  I feel shame for what I am feeling.  For me, there is shame in putting my family through this bullshit, for getting sick, for needing financial help, for feeling isolated, for feeling lonely, for feeling less than, for feeling pain, or fatigue. I think right now, I just feel shame for feeling anything and everything. 

Now that I have poured out my soul and y'all are reading this with your mouths hanging open, here are a few steps that hopefully will help.  Close your mouth, take a breath, inhale and exhale, repeat several times.  Remember this actually helps me... That makes no sense and I know there is at least one of you ready to call Linden Oaks or some other place to have me take a "rest".  But honest, hand to Bible, this helps me.  It allows the words to stop swirling like a tornado and the dust to settle.  It actually lightens the weight on my shoulders and I now feel as if I am not suffocating as much.  Maybe this will help the funky punk move on out and allow myself some time to heal emotionally... again.  To be fair, there is a lot of transition going on, the end of summer, start of school, freshman year for Jack.  With every end shall be a beginning and with every transition there are memories of who I once was and feelings of nostalgia.  I am working on allowing myself the grace to "feel all the feels"  HAHA.... - that one is for you Miss J!

Now, I don't want y'all to worry and please don't be mad at me.  See, there is that sensitive side again.  Even though I know it is OK and healthy to own my truth, I am afraid of the aftermath.  I am a work in progress so I guess, I will add this to my list of things to work on with my hypnotist and therapist and every other "ist" in my world.  There are days for the happy mantras and then there are moments when the only mantra you can say is "Fuck"!  In the meantime - I love you all!  Thank you for being part of my Team JoJo!

Peace ✌
Jo

Walk in Faith without Sight

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

This will be my third attempt at writing this week, for some reason I have some writers block and fear - not sure why that is but these days I do not question my emotions, I simply allow them to roll over me and blow away with the wind.  The past few weeks since my last post, I have been working on balance and acceptance and learning to love the color gray and appreciate it for its intrinsic beauty.  Dr. K has given me the results of my follow up CT scan which showed more lovely shades of gray but this time also a lot of white.  He was able to see white on the scan in areas of my bone that previously looked black on the initial CT scan.  His interpretation of this is healing bone, receding cancer and both Ibrance and Xgeva doing their jobs as mighty little drugs with a big impact. Not clinical remission as of yet but hopefully getting closer.  My only wish is that the researchers would find a test to emphatically determine what is metastatic disease and what is healed bone on a scan, this sure would put a lot of people at ease who are floating around the nebulous gray zones of MBC.

Nonetheless this is where acceptance comes into play, I am always a work in progress but who the heck isn't these days.  I am realizing the ebb and flow of my emotions, my acceptance, my balance are all factors that are essential in learning to walk in faith without sight and letting go of fear.  I popped into mass one day last week, last minute, unexpected, different church, different day and I was by myself.  I usually go with a dear friend and there is a comfort sitting next to him in silence as we share this spiritual experience.  However last week, I followed my gut and did something spontaneous and the sermon or homily (I get that confused still - not a grade A Catholic) was about walking in faith without sight and letting go of fear.  This resonated with me for so many reasons but I think it is something everyone can identify with.  We all technically walk in faith without sight, whatever that faith is, we do not know what the next year, month, day or even hour holds.  We are essentially blind to the future and if we allowed this to shackle us in fear, we would be a people stagnant in their every intention.  And really, who wants this. 

For me, there is a degree of fear in my life everyday, it is the fear of what if, the unknowns, the scary next progression of an unwanted life sentence.  This is where my balance must come in.  I walk a thin tight rope everyday, balancing gracefully and in my minds eye, I am decked out in sequins and feathers, ballet slippers, and with my hair in a fancy bun.  I imagine my tight rope to be made of the finest silk as I glide across, stumbling often but always pulling myself back up to a posture of grace and great poise.  Now here is the thing - this is an image of strength for me and I have begun to empower these images and my inner mantras to help feed the amount of energy I must use every day to push forward, be positive and seek happiness and serenity.  I do not think it is possible to know how exhausting it is to stay in this "pushing forward" peaceful state.

This leads me to wondering about my life list.  Would I have ever created one if it weren't for the big C?  I think a list like this is something everyone should have, call it a dream board or a hope bucket or simply shit I want to see and do, it forces us to make time for moments, for dreams to be fulfilled, and I think it re energizes the soul.  I recently went on a 2 day adventure to see some lavender fields in Michigan with dear friends.  There was a lot of fear going in, how would I feel, John isn't with me, what if something happens, I have a lot of baggage that I try to keep private etc but I threw the fear out the window and found peace, laughter,  and joy in the fragrant fields, the glorious sun on the beach, and even a little bit of excitement on a dune ride where I was able to see beauty at it's finest.  I think the most beautiful realization for me was the amazing way my friends made this happen, they gave their time and love and followed a wish of mine to experience it with me, I am humbled by their unconditional kindness, love and support and hope they found the same peace and serenity I did in the beauty of Michigan.  

Our final stop in Holland, Michigan brought every emotion you could think to name. I hit the lowest of lows, falling asleep in a boutique store chair as I was tired and my migraine was winning the war and then went on to experience one of the highest of highs seeing the beauty of that beach.  I think I could have sat down and stayed there forever if it weren't for the wind, the cold, and the fact that my ride was heading home.  I will be adding Holland Michigan to my life list as I found so much peace there on that beach.  I was able to take my mortifying moment and turn it around as I carved "thrive" in the sand and even as the wind was erasing it before my eyes, I felt the weight of fear, exhaustion, embarrassment, anger, and sadness lift and blow across the roaring lake.  I was back to pushing forward - onward ho, my friends, that is the only direction we can go.

For now, I will continue to be a pursuer of my life list.  There is nothing planned yet but I look forward to whatever adventure comes next.  I will continue to explore my faith and spirituality.  I will continue to work on letting go of fear, not just cancer fear but fear in general as being afraid has always been easier for me than being fearless.  I will continue to thicken my skin and not allow the judgement I place on myself or the judgement I feel others place upon me to weaken me, it is sometimes hard to hear what others have to say to me - that is a post for another time or maybe never but know that I am working on letting go of that as well.   I will continue to be mindful in my movements, in my therapies, in my treatments, and in my life, balancing cancer life with real life, knowing that missing my babies is real no matter what I have.  I will work on holding my head high as I walk, I find myself looking down and hunching forward as to hide, an old habit from long, long ago. And I will continue to explore this creative side I am feeling, hoping to reveal soon a special project I have been working on for y'all.  

It seems I have just given myself a nice little to do list and everyone knows I love my lists.  I will also work on breaking through the block, finding my comedic side for y'all again as I imagine those posts are more enjoyable to read.  I leave you with this intention my friends - walk in faith without sight and live without fear no matter what shapes your world.  We all are made to THRIVE in our lives.  

Peace ✌
Jo

 

Living Beyond The Color Pink...... an organic, evolving journey.: Team Jo Jo

Hey y'all... it's me....
I know I say it hundred times and different
ways, but I do sincerely thank you.  Thank you for being with me in mind
and spirit, for reading my babbles, sharing my words, telling my story
and for sending love, light and prayers.  I am so grateful for each and
every one of you.

Please share my blog with family and friends as
I am really working hard on reaching out to as many people as I can.
And please know that I am sending love, light and prayers right back to
y'all.

Peace,
Jo



Living Beyond The Color Pink...... an organic, evolving journey.: Team Jo Jo: Hey y'all...it's me... Happy August - time is slipping by.  For those of you who know me on Facebook, this may be a bit redundan...

Team Jo Jo

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

Happy August - time is slipping by.  For those of you who know me on Facebook, this may be a bit redundant but let's get the skinny out of the way.  I saw Dr. K today and received the results of my nuclear bone scan from last week.  The important thing to remember about MBC is bone metastasis is the most treatable yet the most clouded in determining remission.  Our bones are made to breakdown and re grow, normal, healthy bones do this at regular cycles and the bone continues to appear healthy.  On the transverse of that are bones that have been broken, fractured, diseased or cancerous.  In my case, my cancerous bones, the bones that have been chewed through with the little cancer eating pac man fuckers appear to be healed bone now that I have been in treatment for several months.  However, healed bone and active metastatic bone can look so similar that it can be hard to discern one from the other.  With that said, most of my scan looks to be stable.  There are 2 areas where they feel there is "uptake in possible metastatic disease" meaning that those 2 areas could still be riddled with the cancer eating pac man fuckers.  Yet again another HOWEVER... Dr. K feels strongly that with my overall health, lack of consistent and significant pain, and active lifestyle that these 2 areas are healing bone.  This is 500 shades of gray, all tangled up in chains and cobwebs.  It is the dark, spooky gray of a misty fog on a moonless night, in a pitch black and scary forest.

OK - that's a lot of words, all foggy, cloudy, ambiguous words that weren't doing much to settle the cancer bitch down.  She was perched firmly on my shoulder, sitting at attention, perky boobs and her hair all fluffed, I swear she came ready to gobble up any bit of doubt and whisper it back into my ear. John was sitting next to me, taking in what Dr. K was saying as good news and all I heard was the teacher from Charlie Brown squawking.  I wanted to hear one word... REMISSION and I didn't get that, not yet.  Dr K feels in another 3 rounds, we will repeat all the scans and he is hopeful he can declare remission at that time.  In the meantime, he ordered a CT scan, more for my peace of mind.  I need a little bit more reassurance that the chemotherapy is kicking ass and taking names later.  But now, another test, another round of waiting...

I know that whatever I say right now is going to sound like I'm a whiny little pain in the ass.  Which by the way are the areas in question... my elusive ass.  At least my tits have calmed down for now.  But in all honesty, I felt swallowed by the fog today.  I can hear the positives yet the unknown is beating a louder drum.  The rhythm of this 3 month cycle, holding my breath, inhaling and exhaling and wondering.  Every now and then there is that slap of reality saying "Yo' woman - this ain't over".  Apparently reality sounds like an old world Italian - no offense.  I will never be normal, regular, boring, plain, blend into the background, wall flower Jo because I have this new pattern to my life, this new beat. 

So what do I do to keep time with this new beat, I was thinking of taking up hip hop but thought that might put my kids into therapy and I am sure after this cancer ride they will need enough of that.  So instead, I am working on my life list.  I am walking and working out - though I feel more like I am trying to run away from my truth.  I am being me - whatever that means for this one moment, this one breath, this one step.  My truth changes daily, almost hourly - I am every emotion and every color of the rainbow.  I do not like gray yet somehow I know the world is not black and white.  I think my sweet G might need to give me a lesson in color, blending and shading so I can begin to see the beauty in the color gray. 

I still think often about this concept of what "legacy" will I leave my kids.  I can't recall if I mentioned this before, but the therapist I went to see asked me this question.  She also asked me what my purpose was but more on that later.  She suggested jounraling, writing letters or making videos and it all seemed so morose, so focused on what was yet to come, so about death - that she scared me  the hell away.  Mind you, I will not be returning to see this particular person and am now trying someone new.  But I have squirreled yet again.  I hope that my legacy, first, is a far way off and second, these words, all of my words from this blog to Facebook, Instagram and beyond.  I hope that my legacy is the blanket of love I have for my kiddos, the unconditional, you are rock stars, you are special, unique, beautiful and handsome, creative, kind, compassionate, and the most precious part of my being in the here and in the after.  I also hope my legacy is educating more people about this disease and how it can affect everyone in its own unique way.

All of this is hard, but that is like saying Mars is not that far away.  There are no words for how deep I dig daily to try to simply be me.  To be the person that someone will laugh at for doing something silly or the person who forgets the dentist appointment and no one thinks twice about it.  To be the person who puts on sexy black ankle strap shoes and can actually pull it off without looking like a fool.  I know that this is hard, it is hard for my kids, my family, my friends, anyone who knows me, it is hard to understand yet I am trying to learn something new from it everyday and I am trying to pay that forward as well.  

Back 6 years ago when cancer had a different meaning for us, John created "Team Jo Jo" t-shirts.  It started as a way for he and my kids to be united in their support for me, they wore them to the hospital to see me after my surgery.  It swirled into their friends and our friends buying these shirts  and we donated all the money to the Edward Cancer Center.  It gave my children some control and I don't know if they would say it but I feel it helped them seem not so alone in this journey we were on.  I think we sold close to 100 t-shirts between the junior high and high school kids, Jack's swim team and friends.  It warmed my heart to see a random stranger wearing my shirt in support of my fight, it made me feel less alone.  So with that spirit in mind, I have been twirling around bringing "Team Jo Jo" back with a new twist. I am hoping this will help to fill the question of purpose for me.  

We all have a purpose, the obvious for me is that of wife, mom, sister, cousin, niece, friend, worker, homemaker (shit, I just slipped into a time warp and it is 1950 again).  I shuffle papers, go to doctors, keep books for many businesses, record, and manage our lives.  I am hoping to find new purposes to add to my list - pursuer of life goals, seeker of creative outlets, and student of peaceful mantras.

I do hope you have let out a few chuckles as you have been reading this.  My peaceful mantra for you is to inhale "I am loved" and exhale "I feel fear".  I do feel loved with every reader, every view, every share, and every comment and all of this love helps to calm the fears and the demons that come along with anything that is hard in life.

Peace ✌,
Jo