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
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
