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

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

I have been quiet lately, I know. I think I needed some time to reflect, rejuvenate, and refresh. But I am BAAAAAAACK and I am so damn happy to be here. I know this may sound a little strange to some of you but I have used these past several weeks to ground myself, strengthen my inner peace, and work on a particularly troubled blocked throat chakra. It is because of this blockage that my writing has been all jumbled up in my head and I have been unable to express myself. I can't even say for sure if this blog is going to make sense, it could just be a hot mess of words, thoughts and emotions. But here goes nothing.

The week of April 9-13 was a pretty important week for me. I was both looking forward to this time and also fearing its arrival. Exactly one year ago this week, I took my first few baby steps on a journey I didn't even begin to understand or expect. One year ago from Tuesday April 10th, I had my first CT which opened up Pandora's box. This year, on that same Tuesday, I found myself swirling a frosted glass of READI-CAT contrast, pretending I was sipping a vodka lemonade on a beach instead of sitting in my kitchen. I went to the hospital, faced the big doughnut of a CT machine and thought - this all seems so familiar. Then I went about life, tried to eat a little dinner, went to see my son's game, and home to snuggle into bed, scroll through FB and wait, wait, wait. Much to my surprise, my email pinged and there were my results. I froze, started frantically calling John's name and prayed rather obnoxiously out loud while he read my results. Then I heard the words - it's all good, everything looks fine and Dr. K said he would talk to us the next day at the appointment. The collective sigh of relief was so loud from both of us you could hear it across the country (at least in my head you could).

Dr. K and I had a great chat, we were laughing and relaxed, I think even he must feel the angst of cancer from time to time for his patients. I don't know how he couldn't. In his words, "the scan looks really good, no progression, organs look great, labs are really good, even better than other months, it's really a good result" I know I looked a little like a crazed clown because my grin was stretched from one ear to the next. You see, even though this is what I prayed for, I couldn't believe it until I heard it from Dr. K himself. He even went as far as saying there is No Evidence of Active Disease (NEAD) in my body. Stop... hold up... what????? I was tentative to grab onto that label but man, it was just hanging out there all shiny and glittery, teasing me to just snatch it out of the air and hold it as tight as I could. So that's exactly what I did. I came home, jumped for joy and proceeded to live a good old fashioned happiness high the rest of the evening.

Friday the 13th - yes, please don't even say it, I am the most superstitious person around so this irony isn't lost on me. But 4/13 will be one year - WOW - exactly one year from my MBC diagnosis - I'm a little in shock, a little in awe, and a little surprised. I will tell you a secret, as long as you don't tell anyone else, I didn't really think I would get here, to my first cancer birthday, that is. Before you start telling me I can't think that way and be positive and all of the good things I have learned over this past year, let me explain. My knowledge of facing a recurrence was nil, it didn't exist because I never thought it would happen to me so I didn't have any frame of reference to look to for guidance. I had already celebrated my 5 year post chemo or so I thought and life was golden. It was but then it wasn't when Dr. K told me the news. I remember holding the phone to my ear with John and Liz surrounding me and thinking this man is nuts, I'm not going to make it, he is just filling me up with hope but I can't do this, people don't "live" with this, I'm screwed. Then one day turned into another which became a month and then a few months, then six and now I am here getting ready to say Happy Cancerversary JoJo. OK peeps - where is my smash cake. I want to do this right, you only get to celebrate something like this once so I want to do it BIG!!! HA!

Leading up to this milestone, I couldn't help but think about its significance and how I felt about attaching significance to this day. One on hand, I wanted to shout from the rooftops, do a little booty dance and throw my hands in the air like I just don't care. However, on the other hand, I thought, it's just another day on my journey and yes it is special but we all know how my last celebration went so maybe I should just hold back, sway a little instead of dance and keep my hands down low as to not draw attention. Then there was the nasty little cancer bitch that climbed upon my shoulder and said "sure go ahead and celebrate, but it just means you are one step closer to the end of your little journey". I am confident that was followed with a wicked laugh from the Wizard of Oz witch and the words "my pretty". I am definitely losing my mind. All 3 of these thoughts swirled for just a quick minute and then I decided it was going to be a little combination of feeling it all. I mean, that's part of my gig right? I allow myself to feel everything, I inhale and exhale and let it go, so that's pretty much what I did. I said "Bye Felicia" to the nasty cancer bitch, did a little booty dance in the kitchen on Friday 4/13 as I was getting ready to leave the house and then went about my days for the rest of the weekend. We had a small celebration that did involve some cake, my family toasting me to many more years to come and I had a quiet internal celebration at Mass. I felt so much joy during that one hour at church - it' really was an indescribable feeling.

My first year on this journey have been both amazing and shitty at times - LOL but let's focus on the amazing. I will never say cancer is a gift, it is a craptastic disease that I would love to see eradicated from this world BUT it has brought peace, passion, joy, wonder, and adventures to my little life that I could never have imagined. I have found a peace in my soul that never existed before, I don't know how because this journey is a crazy ride but somehow it is there. Now don't misinterpret that for me giving up because it is the exact polar opposite. This peace drives me forward, it gives me patience, healthy boundaries, new opportunities, a less fearful look on life. I leave the list of chores behind more often, I listen to my body and make myself and my healing a main priority. I cry happy tears for simple pleasures like a clear blue sky, the smell of the ocean and seeing my kids laugh and be happy. I have found a Faith that I never thought I deserved again and a community of supporters that carry me when I cannot carry myself, supporters who challenge me, guide me, encourage me, and always let me be me. I honestly feel I don't deserve any of this because I am not doing anything special, I'm just living out this journey the only way I know how, one moment, one step, one breath at a time.

I have been blessed over the last 12 months to take a class in life. You won't believe this but I am really a rather shy person. I lack the confidence of a 6' blond beauty or the grace of a Broadway dancer or the ease of an Olympic athlete. But I have begun to understand that none of this matters. It isn't about the outside ease and beauty a person has that makes them a true wonder, it is about the ability to see inside yourself, be humbled enough to continue to learn and grow, and brave enough to step outside the comfort in which you live. If I could have a quick conversation with myself on April 13, 2017, I would say that it is OK to become a student again. It is OK to try something and fail and then try again. It is OK to cry, to laugh, to be afraid, to feel joy, to love God, to taste something new and put away old pains. I would tell myself it is absolutely fucking perfect to LIVE every day to best you can in that moment you are in - no regrets, baby, life is too short.

So what now you ask? I'm so glad you asked this question because who knows - I wish I could give you a better answer. The reality is I may be NEAD at this time and the hope and prayer and wish is that I stay that way forever but the truth is, I will continue to live my life in 3 month increments. I will always be metastatic - MBC - that part doesn't go away, I will stay on my oral chemotherapy, I will have various aches, pains and side effects that I will manage, and I will see Dr. K monthly and be scanned every 3 months. I will have scan anxiety again as I don't know how a person in my shoes wouldn't. I will still have the unpleasant pleasure of being mind fucked by my MBC BUT I will continue to live as fully as I can. I will continue to work on choosing acceptance instead of negativity for whatever is thrown my way. I will always pray that my medicine stays smarter than the little cancer fuckers in my body which are currently sleeping a deep snow white sleep. And if it doesn't then I will face it, I will be OK, and I will Thrive!

Peace ✌

Jo