Living Beyond The Color Pink...... an organic, evolving journey.: July 2018

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