Metastatic Mama

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

These words have been swirling in my mind since last night and I actually had a different title for this one though the curse word was rather harsh and I didn't want to start out with such a bang.  First before I begin lamenting on again, I need to say THANK YOU.  These trite words are not nearly enough to display the gratitude I and my family feel.  I have been carried through these last few days on the wings of your prayers, positivity, mojo, good energy and love.  I realized this morning that you are my tribe, when yesterday I said I don't belong to anyone, this morning I woke realizing...you, my family, friends, readers....you are my tribe and I am forever humbled by the outpouring of everything I am receiving.  

So...let's get down to the nitty gritty Metastatic Mayhem that is now my life.  I am sitting front row and center on the cancer train, barreling full speed ahead, destination - well hell, we don't want a destination because that means things we are not going to talk about yet.  For now, I am going to do what I can to hunker down and just enjoy this ride....maybe my train conductor could look like Ryan Gosling or some other famously hunky man.  But I digress, again. 

When I walked in at the hospital and saw the staircase leading to the 2nd floor cancer center, all I could think of was that I cannot climb these stairs.  This is too much to take on but I snapped my photo, went up, checked in, and suddenly I thought "this shit just got real".  A new sense of anxiety blanketed over both mine and my husbands shoulders....the weight was 200 hundred pounds at least and I think we both carried it around all day.  

The news....yesterday I met with Dr. K, his nurses and social workers at the Cancer Center.  I had more information thrown at me, I thought my brain was going to explode.  All of a sudden, I was learning a new language with words and phrases that I swore were not in English.  I felt like someone switched the station in my head to Telemundo TV.   Let's start with the positive.....the outcome of the biopsy showed nothing more than what was expected, no other organs seems to be affected, Dr K has so many options in his medical bag that it gave me hope, and we will be starting treatment right away...the waiting is almost over.  The downside - look at what I did there - I didn't say negative....I am literally patting  myself on the back for that positive moment.  OK....downside....this is a stage 4 metastatic breast cancer in my bone.  The cancer itself is ER/PR + which means it is estrogen / progesterone positive.  Those 2 hormones are what feeds my cancer cells and helps them to grow and multiply like dirty little fuckers.  OK, folks move your eyes away from the number 4, close your mouth gently so you don't bite your tongue.  I know it's scary...I personally now have an utter disgust for the number 4.  I am sure Sesame Street would sing some song to me over the benefits of the number 4 but I will never see it the same again.  My cancer is a stage 4 because it has progressed outside of the originating cancer site - my breast and advanced to another organ.  Stage 4 metastatic breast cancer is not curable - those words are hard to swallow but it is treatable and that is what I am running high on right now.

My treatment will be 2 fold - the ultimate goal will be to rid my body fully and completely of estrogen.  WOOHOO....menopause I am coming back....let's throw a party!  I just can't wait.  I will receive an injection on Thursday to chemically shut down my ovaries, I will receive this injection monthly until I can get my ovaries removed.  My goal, because I am not letting the pink cancer grass grow under my feet, is to try and have the surgery ASAP....it is in the works.  I will also receive another monthly injection to help strengthen my bones.  With the cancer being in the bone, we have to watch for the outer layer of my bone for degeneration, we want to keep that outer layer strong to protect my bones from becoming brittle.  Lucky me that the bones affected are not bones that take on a lot of stress - meaning things would be different if it were in my femur or tibia, for example.  The next part of my treatment plan are 2 oral medications. The first one is an aromatase inhibitor, this drug will help to block the estrogen in my body further depriving the cancer cells of their "food source".  The second one is called Ibrance - it is a drug that inhibits the molecules that play a role in the cancer cells growth.  It is this "cocktail" of medications the doctor feels will give me my first chance of remission and it also shows promise of longer periods of remission status.  

There are a few other things I need to get taken care of besides my surgery.  On Thursday I will also have an MRI of my full spinal cord and brain.  Dr. K is more concerned over my spinal cord as the little cancer fuckers are littered throughout my spine and he would like to get some better images for a baseline.  I will also have a baseline blood test for tumor markers.  All of these tests, including the bone scan will be repeated in 3 months.  That will be my stop gap....in 3 months time we are hoping the little fuckers are all fucked out and dormant.  If not, Dr. K will alter my "cocktail" and we will go at it again.  This will now be my life....forever holding my breath....forever waiting on some test....forever praying for remission.  My life was just put on pause and I think the button broke or is stuck or lost - damn this cancer crap.  And by the way....I would rather have a frickin' margarita for a cocktail - just saying!

Dr. K patiently answered all my questions, quietly waited for me to catch my breath as I was holding back tears.  I told him I purposefully wore mascara for him so I wouldn't cry....I was marginally successful.  We have some options for pain management for now however Dr K is really hoping that once treatment is underway my body will respond and my fevers, chills, pain, hot mouth, fatigue, and weight loss will be better. The other shoe falling from the sky is what will the "cocktail" gift me with in regards to side effects.  It is yet another unknown and frankly a present I would like to return but I'm not sure where to send it, address unknown.  Menopause will bring about it's own fun party tricks, as for the rest, it is another waiting game....in particular concern, the impact on my migraines.  Please GOD don't bring them back ten fold....it might just do me under.

We talked about time....this is a number that I was focusing on much of my day yesterday.  There was a neon sign flashing in my mind.....but as Dr K reminded me....it is really another unknown.  So much can change, good or bad so instead of looking that far ahead down the track, I need to look at now.  Again, I am only marginally successful.  I took all this in, John and I had lunch, chatted, reached out to family and friends but honestly it's not real.  I mean, I am not crazy, I know what is happening, it just feels like an out of body experience.  In a matter of a few short weeks, I went from a pink warrior survivor to a lost cancer patient.  I still identify with the color pink but I no longer am part of their army.  I am walking the combat lines, looking for my army but I realized no one talks about Metastatic Breast Cancer.  There are others out there like me, I know that but this cancer doesn't have a voice.  It is the ugly step sister to the Cinderella pink fairy tail.  It is the scary breast cancer, the one that may drive the research but there are no voices talking about this life, this fight for life, this rite for life, this fucking terminal breast cancer.  

My husband seems to feel that maybe this is my purpose.  If we cannot explain why bad things happen, why God has chosen this particular path for me, maybe God is encouraging me to find my voice for this disease.  Maybe I can bring hope, change, awareness, and understanding to the something hushed and unspoken.  I don't know if I agree with John, I just know that writing clears the demons, gives me hope, and reminds me to find a way to push play on my life once again.  

My day yesterday was fraught with so much but one thing hasn't changed.  I am still a mom and so after all the crap, the talking, the calls, the crying, I got up, got dressed and went to be a mom with my son at the high school he will be attending in the fall.  This was my first big outing since I boarded the train....not going to lie, I broke down at the end.  I think, I was tired, I was over thinking, it was nighttime, the scariest part of my days.  There was an emphasis on the class of 2021 - my son's graduating year and I had this moment of resign - what if.....how will he cope.....and that is what did me in.  I know I cannot think like this but I ask you how do you not let it creep in every now and then?  How does the devil not insinuate himself in your head and fuck with your mind when you have something inside your body that doesn't belong.  I was with a group of women and realized these are things hopefully they never have to face and I became sad for the burden I carry and for that I am so sorry.  I am sorry that I let the devil win.  I am sorry I have this disease.  I am sorry of the financial stress it will put on us, the emotional stress on everyone, the physical stress it is going to take to fight everyday and win everyday.

All I can ask is for today.  Today, I am going to push the devil away and I am going to win today because each little success can be woven into a quilt of strength.  This, overtime, will comfort me and remind me to always persevere. 

Peace ✌

Jo

 

A Little T & A

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

If we don't find humor in adversity, adversity will take over and win.  This is one of the many things I keep telling myself, along with you've got this, hang on, fuck it, no that's not right, and stop talking to yourself - you look like a nut ball.

This past week has been moving at a snails pass, I have experienced the highest of high - no pot involved - and the lowest of lows - also no pot involved.  I find that I am sometimes being the strong one for everyone else, not that I think for one second everyone else is expecting that from me but rather that I cannot bear to think otherwise.  For if I am not strong, then no one else will believe the shit storm I am selling and have strength for me.  Does this make any sense because to be honest I am feeling a tad bit undone at the moment.  It is T-2 days before the big reveal.  That is what I am beginning to think of Monday.  My own version of a Chip and Joanna show except that instead of a fabulous new home remodel at the end, I will be receiving a new protocol of pills, drugs, toxins, and steroids to  makeover  a new, improved, less cancerous version of myself.  Dark, maybe, but also a bit of reality thrown into the mix.  Today, I am all about reality.

I have endured the most tragic of news thus far, the diagnosis and feel that come Monday, I will be ready to buy, sell, and trade whatever it is Dr. K is telling me.  For nothing can be worse than the unknown cancer purgatory that I am currently in.  I have my handy, dandy notebook ready, pencil in hand, questions laid out and formulated, ears cleaned out for maximum listening potential...I am ready, all I need is to go to sleep and wake up Monday morning.  I have this vision of me up and dressed at 7 am, driving to buy to donuts and coffee for Dr. K and his staff, showing up early, and handing over my gifts as if to say...look I am bribing you to be nice and give me the best news ever.  Don't worry, I won't actually go and do that but it is nice to indulge in that fantasy versus some of the other things I have been imagining.

Let's lighten things up a bit, shall we?   Many of you already know, I am an anomaly in the medical world - if there is a side effect, I will probably get it, if there is a strange condition, it's mine, if there is an issue with medicine, my name is on it.  So it doesn't surprise me that this new path on my journey isn't going the way of what I would consider "normal".  Since my first step April 1st on this new pink path, the most pain, the most annoying places on my body causing me trouble.....are my tits and my ass.  Yep...that's right folks....only me.....has a cancer recurrence and most of my tumors reside in the bones in my ass - sacral, iliac, low spine - and my tits - sternum and ribs.  So when I have a flare up, it is my tits, ass, and then my legs that bother me the most.  I have to find humor in this because it is too absurd to be anything other than ridiculous.  

Let's talk biopsy.  This was probably one of the most humiliating points in my cancer career.  I have had a lot of shit done to me, been in a lot of compromising positions and have had more people see me naked that I care to recall.  As I entered into the hospital for my biopsy Wednesday with my faithful friend Liz by my side, the world seemed to be titled slightly to the right.  There was a scurry of activity, more nurses that I needed around me, it was loud, chaotic, and one mishap after another.  Nothing was life threatening but when the nurse wanted to check my blood because I was a diabetic (which I am not), I did ask her if she was even dealing with the right patient.  After that and a few other small snafu's, I told them all to get their shit together and come back because I couldn't deal with their crap right now.  Pretty much, my exact words....my one and only break down Wednesday morning.  Next stop on the cancer train was the CT room where they would be performing the CT guided needle biopsy.  Enter Doogie Howser - not kidding - the doctor looked 12, OK maybe 15, seemed like a nice enough man though, very knowledgeable and thorough in what he was about to do to me.  Dr. Doogie explained they were going to biopsy my iliac bone.  From my uneducated point of reference, I thought that would be the bony part of the front of my hip.  Then Dr. Doogie explained I would be lying on my stomach on the CT table?????  I began to have a quizzical expression on my face, looking first at Liz and then back to Dr. Doogie when realization hit my like a punch in the face....this man, this doctor was going to drill a needle into the bone in my ASS.  WTF....this cannot be happening.  

I looked to the kind doctor and said...."wait you are drilling into my ass".  He flubbed around a little with his words but I just kept repeating it because I think I needed to hear him say it out loud.  Yes, he was going to be drilling the needle in the iliac bone in my upper right ass cheek.  Apparently your iliac bones are the bones that create the girdle which holds your pelvis in place - who frickin/ knew?  I so need an anatomy lesson to figure out where all these places are on my body.  So there I am, face down on the table with more wires and tubes in me than a sound machine has, being slid back and forth through the CT machine, ass up, so they can get the images they need to find the exact spot to drill.  When I say drill, I mean drill....like a home depot special.  It sounded exactly the same as the one my husband uses when fixing things around our house.  In my drug induced slurred speech, I mentioned this fact to Dr. Doogie and asked him if he did indeed buy this drill at home depot.  I am not so sure he appreciated my humor.  Biopsy done, recovery done, on our way home and all I can think of is...my ass hurts.  Only me....tits and ass....only me.  

Moving on from Wednesday throughout the rest of the week, I have begun to heal.  The biopsy left nothing more than a small prick of a needle, a bruise and a shit ton of internal bone pain.  It has been uncomfortable at best, downright painful as shit at worst.  The spot is just in an unfortunate place as it is aggravated when I sit, recline, lay down on either side or my back, walk around or drive.  This then aggravates the other affected sites which then causes the bone pain to radiate down my legs.  I am not telling you this to feel sorry for me, just being real.  I have literally become my own pain in the ass.....

I have had been blessed with family and friends being my lifeline right now.  They are tethering themselves to me, keeping me steady, making me laugh so hard I almost pee and talking me through the tears.  I had a good release Thursday night, it was probably one of the lowest points for me this week.  I don't know why but it was a trifecta of a clusterfuck happening all at once.  I was in pain, I had a fever, I felt alone, scared, tired, overwhelmed and tired of living my story.  There were a few angels unbeknownst to them that this was happening who called and texted that night....it helped take the edge off but I think I needed to let it go...let it come out...drain the tear ducts.  Which is exactly what I did, hiding in the bathroom with the shower running so Jack wouldn't hear me, I let loose while texting my poor sister who is so far away.  She rallied though and stayed with me through the storm...Bless her for that.  

You might wonder why I am over sharing....is it a condition I have?  No...I don't think it's something to be alarmed of or something for me to be ashamed of....this is now part of my life.  But the amazing thing is, what I need everyone to remember, is I am still me...tits and ass and all.  I will be a hot mess at times, I will be the same old Jo at times.  I need cyber filled pages of love and prayers, I need random text messages and calls and face to face chats.  I need alone time and time when I am surrounded by people to the point of suffocation.  I need to release.  I need to hold my shit together.  I need to be strong and be weak. I need to listen and pray.  I need to feel.  I need all of it and I also need to remember that I cannot do this alone.  I am humbled by what we are receiving. I am indebted in gratitude for the kindness, love, prayers, hands on help, check ins, hugs, laughs, prayers and peace you all are sharing with my family.   This journey will be a long one because I am not ready for it to be anything but that.  Stay with me, stay strong, and I will pay if forward to each and every one of you in whatever way I can.  I promise you that.

Peace ✌ 
Jo

Tree of Life - give, grow, and visualize

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

I am feeling the love and it is amazing, exhilarating, and empowering.  Thank you so much for your kindness.  This is a journey for me, part of my path and I am literally sitting here smiling as I write.  😍. I have also realized that less thinking gives me a confidence I never thought I would have so that's a good thing....I think....LOL. 😕   

I have had many hours of quiet over this past week, allowing me to have time for contemplation, day dreaming, reminiscence, and wistful pondering of all things good, bad, and in between.  Roll with this little exercise for me....take a moment to visualize yourself as a deep rooted tree, full of life, full of branches, healthy and strong. 🌳 Some of you who know me, may have heard this idea before. 

I feel there is a symbolism to the words "tree of life" and have used this symbolism throughout my journey.  I picture myself as a strong and vibrant tree, the main trunk is me, body and soul, standing strong, healthy and proud of the beauty of it's life.  The main branches of my tree are my loves, my husband, 3 kiddos, my sister and her husband, niece, nephew, cousins, aunts and uncles.  They provide my foundation.  There are a few saplings which no longer carry life but are still an important part of my tree, my parents and other family and friends who have left this earthly world too soon.  The remaining branches on my tree are my friends, neighbors, doctors, and relationships I have formed throughout my life.  These branches provide a robust, full, well rounded source of shelter, comfort, beauty, and growth.  As I cross paths with new friends and old, a new set of branches will grow and continually fill out my tree of life so that one day, the branches will overflow and overlap with one another creating a visual image of strength and security.  

I am not a huge granola type girl, sitting around a circle, smoking a peace pipe, and singing "Kumbya" - and if you are a believer in all of those things - that's totally cool, I mean no offense, honest to God, hand to Bible. I think the analytical side of me takes over and doesn't allow me the liberty and freedom to live a more hippie free lifestyle - maybe something for me to add to one my future detours on my journey.   I am a work in progress and always willing to learn.  Anyhow, I digress, I do believe in the power of visualization.  Sometimes it works for me and sometimes not so much.  But I try to keep this image of a strong, healthy tree in my minds eye throughout my days and it's something I would love for you to try as well.

We all have good and bad days, we all feel alone at some point in our lives or simply lonely.  Whether it be due to illness or frenzied life, we can somehow begin to feel isolated without anyone isolating us or having a specific incident which causes us to retreat.  It is at these times when seeing that image of a strong and healthy tree in your mind will help you remember you are not alone, never alone.  One of the hardest actions for people is reaching out to someone for help or just to talk.  No one wants to impose or seem weak.  What I have been humbled to learn throughout my life, is the concept of helping one another is innate.  For me, I would not be sitting here without the unbelievable help of others  - some called upon and some who simply helped because they are of a giving nature.  These acts of love and kindness watered my tree and allowed for new blooms and branches. 

In the society we live in, busy, chaotic, hurried, we should always pause when reading a Facebook or Instagram post, catching that quick text or call, or chat at the end of the driveway and be present in the life of the person on the other end.  It's hard, I know, we all have too much shit going on, I am as guilty of this as the next and need this reminder myself.  Sometimes, that pause is all everyone needs....it can remind someone they are not alone, it can give them the courage to ask for help, it can simply be what they need at that moment.  It also allows us to grow a branch on someone's tree for it is as important for us to provide growth as it is to need growth. 

For my faithful friends who helped me last night....thank you.  It is never easy to ask but I believe in the power of karma....what we put out in the world is what we will reap.  You my darlings, will receive blessings for your simple acts of kindness. 👼  And no worries....nothing tragic going on....just a thrown out back, more nuisance than anything but definitely hindered my ability to be as funcationable as I would like.. 

Take this reminder and tuck it in a corner of your mind so as not to forget.  What a beautiful image we can create with a forest full of grand, full, colorful foliage on an infinite number of trees. 🌳🎕💮

Peace. ✌

Perspective: A Persnickety Noun

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

First, let me thank everyone who read my first post last week.  Remember that I said this is a work in progress and that is an understatement.  I have figured out, all on my own a few things about blogging, so I made a few changes to my blog, added a few things also, and I am hoping you like everything I did.  One addition that is a bit more for me than you, is the follower button.  If I did this right, I am hoping if you click on that button, I will get to see who is following along on this crazy journey of life.  If y'all could do that for me, I would so appreciate it.

OK...enough of the business....let's get down to this writing thing.  If you are friends with me on FB, you probably noticed that I posted the 3 C's: Choice, Chance and Change.  Everyday we are faced with the 3 C's - we all have choices to make, from what to wear, what to eat, down to whether or not we are going to be nice or nasty today.  Some choices are easy and then there are those that create this tidal wave of emotion flowing through us.  It can be fueled by feeling like hell or excitement, or too much of any one thing.  No one choice is right or wrong as it is what you are feeling at that moment.  Just remember, with every choice comes a consequence, bad choices can lead to a spiraling out of control pattern, good choices can help you keep yourself from falling into the spiral and we all want that for our lives. 

Once the choice is made, we then have to take the scariest step....we need to take a chance on ourselves.  The chance to change a pattern, change a lifestyle, change out whatever is bringing us down or whatever isn't currently working.  The hardest concept to accept is that there are simply some things that cannot be changed. For example, I cannot change my migraines but I can do whatever is possible to try and make life better, less "migrainey" and more full of living.

Let's face it, we all have our own bag of shit to carry....oops....my secret is out.  I swear, that's part of my charm so please take no offense,  OK...back to the bag of shit.  I woke up on Friday and realized I had to make a choice to change.  Spring is a touchy time for those of us who suffer from migraines and I have been in a headache loop for about 5 days now, added to that, I am 1 of only 4 people left in the town of Naperville as everyone else has flown, drove, or sailed away to beautiful majestic places full of sun, sand, sea, and snow (for some), including my family.  

Friday hit me like a jack hammer, I was cranky, pissy, achy, and feeling sorry for myself....there I said it.  Don't go feeling sorry for me, it just is what it is.  I tried to make the right choice....I tried to repeat all the bullshit positive messages I could find on my phone, to remind myself that my thoughts will become feelings and my feelings will be portrayed in my actions.  But....I couldn't do it....I needed  24 hours to just be me.  One thing did not waver though, I still drank my shake, ate relatively healthy, and did my 35 minutes of cardio - even though all of that was the farthest thing from what I wanted to do, which was eat a pound of french fries, drink a chocolate milk shake and chase it back with a few dozen chocolate chip cookies.  Friday was not my time to make a change, everyone has there time, every change has their time.  We have to be patient to allow for the universe to align so change can happen.

My point here....is that how we are feeling, what we see and interpret are brushed with our own unique perspective. And perspective can be a persnickety thing, my perspective yesterday was the shits but today when I woke up with the same jack hammer head, I realized that isn't going to change if all I'm doing is wallowing and half hardheartedly living.  So...I changed my thoughts and decided maybe the bullshit positive messages aren't really full of bullshit. Does my head still hurt, yes but how I am dealing with it is where I made the change today.

The moral to this story is sometimes it's OK to simply feel, whatever it is that you are feeling.  But only allow yourself no more than 24 hours to be blue, or down, or whatever you choose to call it.  After your allotted time period is up, make a Choice to Change your perspective, don't change YOU, just tweak that persnickety perspective to find the sunshine in the gray gloomy day.  If we don't ever take Chances in our lives, we will never move onward and upward on our journey in life.

Peace! ✌