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.
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!