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

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

This blog is going to be a vegetable soup of topics so I hope you are able to follow along as I ping pong around the words in my head. First, let me say that I am failing miserably at one of my 2018 intentions BUT before you close your browser and think oh shit, she's whining again, let me say this is a good thing. I'll explain - at the start of the New Year, I made a list of "intentions" rather than a resolution with the idea that an intention is a more positive minded, friendly way to kick your ass into gear with a new year. I wrote out a plethora of intentions, some small, some big, and some, well, rather fluid. One "intention" I had was to blog 2 times a month and in the beginning, I was beating myself up for not hitting my goal BUT I have come to realize this is one of those more fluid intentions as I need to stay true to writing what is in my heart, mind and soul and not worrying about conforming to a schedule. PHEW - done and done. I feel better already.

Image result for time to make the donuts

My last post was about hitting the amazing one year milestone and my NEAD status. Nothing has changed in this moment so that's a good thing! Except, except, except... I woke up one day and was like WHAAATTT - I'm over this. LOL, seriously I said those words not because I was feeling sad or deflated but simply because this cancer business is getting monotonous and sometimes tiresome. Now I know that sounds like I'm being a baby but I don't mean for it to be so. I relate to this feeling the same way someone might look at their job. Now unless you are a famous movie star or director, a model, an artist or simply someone who is fortunate enough to have their dream job (ahem Jianna, if you are reading this) in which they are able to fulfill their deepest passions everyday (get your minds out of the gutter) - then you know what I am talking about. It's sort of like the donut commercial where the guy wakes up everyday in the middle of the night and mumbles "time to make the donuts" and you can tell this goes on day after day after day. There are moments where I feel like that donut guy - minus waking up in the middle of the night.

My main job is to keep myself living a thriving life. I do this in a variety of ways that appear to the outside world as a pampered princess life (I mean the world who doesn't know me and my MBC). Sometimes to be fair, I feel a little indulgent, those are the days when I am feeling the MBC less and then, there are days when I am impatiently waiting for my next self care appointment because I feel as if the MBC is eating me alive. It is so easy to want to chase the hope, there are any number of ways those battling this disease practice self care. It can be easy to fall into wanting to do what every person with longevity is doing. This is where listening to what resonates with me, listening within - another mantra comes in handy. Nonetheless, I realized that everything I do, even living mindfully and spontaneously and my life list adventures all have but one purpose - to help me thrive. That has become my new job, my mantra. I split all of this up with family time, social time with friends, and quiet introspective time. Either way I look at things, it is both good and sad. I have accepted my role in living and have decided to pursue this with a healthy dose of passion and reality. The sad side, is the job itself - this isn't a job anyone would apply for nor seek out so with that comes more acceptance and reality. And with one full, amazing year under my belt, I realized this is my job for life because my life is completely interwoven with my job. Does that make sense?

Now for some public displays of mental breakdowns - I can laugh about it now but OY! As my milestone came and went, I began to feel more of the weight of what I carry everyday, the ups and the downs. There are days I think I should be as strong as any super hero out there and then days when I think I am as weak as Tinkerbell. To say there is an emotional swing in my moods is an understatement, I can cry at the beauty of a flower or yell at that same flower for making me sneeze. It's anyone's guess and it can change on a dime - the emotional pitfalls of MBC, menopause, being a parent, being a wife, being overly tired BLAH BLAH BLAH!

So one day I was planning an outfit in my head, I had broke down and bought this really cute and "outside my box pair of pants" and in my head these pants were the main attraction of this planned out outfit. I had somewhere to go where I needed to feel as much myself as ever, I needed the confidence I would get from pulling off that planned outfit. Come on gals - you know what I am talking about - right?? Much to my dismay and horror, I found a snag in the pants and had to exchange them for a new pair. (Now to my defense, I just had some bad news regarding a useless rental house we are trying to sell and I was frustrated - keep that in mind while reading further). I walked into the store - Evereve in the little town where I live and they were as sweet as could be however they didn't have the pants in my size to exchange and neither did any of their other stores in a 50 mile radius. Suddenly the planned outfit I had pictured in my head was going up in smoke - along with my confidence, my rationality and every other sense I had. So right there standing at the counter, I burst into tears and began to overly dump my story, troubles and woes. I didn't give a hot damn who saw me. They had already planned on shipping me the pants but there was no guarantee I would have them for the day I needed. Well, bless Simona and Lisa's (store managers) sweet hearts because they listened, they empathized and then they let me take back home the snagged pants (you could hardly see the snag) so I had them as back up. And for me, in that moment and in the moment I put on my planned outfit, they were my angels.

I realized after my senses, rationality, and confidence came back, this type of kindness (now they were probably scared and just wanted me to stop crying) but honestly, this undeserving kindness is exactly what really helps someone who is just having a shit day. And it is this that makes me pause and think - most people are not going to fall apart in public over anything. Most people will carry their sadness, fear, or grief deep inside themselves until they are frozen and paralyzed. I am not just talking being upset over a trivial pair of pants but it could be anything, trivial or monumental and most people will not say anything. I believe it is our job to do whatever we can to be the angels of the world for whomever crosses our paths because we sincerely do not know what they are carrying. And if we can help one person find that one thing to help them gain perspective and comfort, even if its only for a brief time, then we have helped to make another persons' heart feel better. We live in the eyes of God (or whatever you believe in) and with that mind we can choose to bring more kindness into the world. Now for me, one thing I did was march my little ass back into that store the following Monday, not only to thank them and apologize for my over sharing but also to hand them a mantra block and say use this the next time you are having a bad day. Put this in your back room, flip your block to however you're feeling and hopefully it will make you smile, especially the next time a customer comes in crying over a pair of pants.

That is just one example of me falling apart at the most inopportune times. I don't think I

realized how much I continue to carry inside. I think there is part of me that tries to shut it down, I mean it's been a year! A whole frickin' year and I plan to be one of the outliers - one who lives with MBC for 5, 7, 10, 15 to infinity years with this disease and I don't want to alienate every person around me because I can't let it go. So I fall apart to strangers, or I cry on walks by myself, or I quietly get up and leave a senior celebration because just wondering if I will make it until my son is a senior paralyzes me, or I hide in the bathroom, or cry during mass. I am not sure how to handle this part of my journey. I know there are some people who don't understand why I am even still standing here, the terminal side of this disease is a broad topic. MBC is terminal but there is no specific expiration date and carrying the unknown wonder can both be a marvel and a burden.
Dr. K and I recently chatted and my answer to how are you feeling was "same old shit, just a different day". I wasn't trying to be trite but the sleeping side of cancer doesn't abate the side effects both physical and mental of MBC. Those are the things Dr. K cannot control, it is a bit of collateral damage you accept with MBC treatment. Sort of taking the good with the bad... oh no, now I am singing the Facts of Life theme song! We talked of my next set of scans, when to do them, what scan he thinks is best and he honestly wanted to know how I was feeling and what I was thinking. My answer was "today is a good day so I feel somewhat ambivalent but catch me on a bad day and I will want to sign up for every scan, x-ray, MRI, nuclear medicine, radioactive whatever that is available, it will be like I am signing up for spa treatments - give me the works"! I think this speaks to the journey, how it continues even with life moving forward. And how some days MBC is a quiet hum in the background of my life and other days it is like Ozzy Osbourne is "screaming" the MBC anthem song in my ear all day long!

I do believe some of the novelty has worn for not only me but most. I have always said this is going to be a marathon rather than a sprint of a journey, I don't think I thought about all that comes with that. It is important for me to continue to find adventures, thriving moments and milestones, and peaceful acceptance of this journey. A harsh, scary truth is that everything can change so fast, progression will come, different drugs and side effects will be introduced - the when is unknown - I am thinking somewhere around the year 2050 will be good for my schedule. How will I continue to make the positive moments happen; by continuing my new job of self care, practicing my faith, and living my truth to the best I can in the moment I am standing in while abandoning my fears and worries. That sounds like a mighty tall order but I know in my soul, any attempt at living this truth will help sustain me longer and farther as I walk my journey each and every day!

Peace ✌,
Jo