Living Beyond The Color Pink...... an organic, evolving journey.: February 2019

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

Happy February! LOL... I am reaching for anything I can to bring me out of the doldrums of winter,
gray skies, dirty snow, and cold ass weather. I am currently cruising along on the MBC roller coaster, adapting to the a new rhythm once again as I get comfortable in IV chemo. I won't bore you with all the details, it isn't anything exciting - fatigue, nausea, no appetite blah, blah, blah. I have had a LOT of time to think - oh shit, that is not a good thing. When I start over working this brain and over thinking and over analyzing. We all are in trouble!

Everyone has advice, it's a natural human instinct to want to help others who are in need or suffering in some way. I get so much advice, from the crazy out there shit to the simple, "just be happy". Damn if only it were that easy. Let's talk about this idea "just be happy". This piece of advice can apply to anyone, sick or not, suffering or not, "just be happy". Well, if it were that easy and we all could flip a magic switch - I know a few dozen or hundreds of therapists and counselors that would be out of a job. But it isn't that easy and for those of us with MBC, for some of us at least, it really isn't easy.

I know that I should be celebrating every day I wake up and my eyes open and my lungs take in breath. There should be champagne flowing, music playing and instead of walking to the bathroom each morning, I should be dancing my booty all the way to the potty. OK, let's turn off the Hallmark movie and slip back into real life. I do wake up and as I assume butterfly pose, I do say "today I am grateful for my breath" but then as I turn to my side, I hear the snap, crackle and pop of my bones and I begin to take slow, cautious steps toward the bathroom, anything faster than a snails pace and I would most likely fall over. My body has to warm up, like an old, well loved classic car. While all of this is happening, my brain starts to do a mental inventory of how my body is feeling - what side effects will I have on my plate today and are these the only things I will have on my plate. I am not complaining, well maybe a little, but I am trying to paint a picture. I miss the days of flying out of bed, heading into a workout, eating something yummy and then moving on to a plethora of 15 "to do" list tasks. But I have said that before.

I think I am suffering a little from cancer envy??? What the hell is that? I am making this up as I go so bear with me. I hear many stories of "only 3 more rounds of chemo, only 4, 2, 1 and now I'm done" and I think to myself holy shit balls - this will never be me! It's like forgetting something super important that is life changing and then all of a sudden remembering it again. That will never be me, I will never be done. Fuck, that sucks! Don't get me wrong, I have known this all along, I have written about it many times but sometimes life takes over and you can forget. I don't know if forget is the right word but you can cope without thinking too much about it but then you begin a new phase, IV chemo, and it all comes rushing back to you. I will never be done until I am literally done with living. Well that's a sobering thought.

I am beginning to feel that my days are that of a hamster on a wheel, going round and round, not getting anywhere, not able to plan ahead, not able to fit in with the cool kids anymore, simply circling my little bubble of life. I always said I will not be defined by MBC but in reality MBC does provide some definition to my life. The definition in itself isn't bad, MBC has shaped me, changed me and allowed me to evolve but it also has limited me, haunted me, and stolen from me aspects of my life that I can never get back. Sometimes it is those losses that I mourn and I think that is why the simple "just be happy" is more complex to put into practice. And then there are the seasons where waves of people are dying daily from this disease.

"Just be happy"... I want to say, "don't ya think I am trying?" I am not missing out on the meaning of my life, it's just so complicated. I want to "be happy" but I have all this shit I carry around. I want to forget the shit but it is always there and once again I am finding myself walking on that tight rope. I am balancing hope with reality which makes me balance being happy with being weighed down by the disease and its baggage. I honestly don't know if I am making any sense but I guess what I want to say is this... To the person giving advice to anyone "just be happy" isn't that realistic and to the person receiving the advice "just be happy" try to understand the givers' intentions. They only want to see us pain free and enjoying life.

Part of what helps me cope is being active in various MBC groups however with that I learn of the many who die from this disease every day or I hear stories of hospice and how it affects everyone when that decision has to be made. Recently someone that I knew peripherally passed away. We were not close and I will not exploit her death but it did get me thinking. With each passing of a person with metastatic disease, someone is left behind. There is the obvious, the persons family and friends who are mourning their loss. But there are also those who are still living with this disease, those who still have side effects, drug interactions, sadness, anger, hope, triumph. How does this affect the loved ones of those who are no longer here? And how do we, those that are still here in the trenches, not feel some guilt? I guess it would be a sort of survivors guilt.

This is why I said my brain is over thinking. Too much time indoors, shielded from the cold and dreariness of winter isn't always good for the soul. I don't want to give up, that is not what I am saying. I feel guilty for still having options - that is the catholic in me and I also feel envy towards all the success stories I hear of on a regular basis. Success stories of stable scans, being done with chemo, cancer free parties and NEAD status. After 7 months of one failure after another, one bad scan after another, I am finding it so hard to hear the good stories of triumph. Does this make me a terrible person? Does this make me shallow? Should I go to confession - probably! I think it is the fear of losing that brings on the envy. I cannot help but compare my situation to others out there and as a wise person once told me "comparison is the thief of joy". I should listen to her, I really should.

Oh the complicated web of emotions that surround MBC, it is a maze I find myself walking through

daily. I really need someone to be calling out my name as I go, in order to help me find my way, like a sick and twisted version of Marco Polo. I don't want to get lost in the chaos of MBC and there is a fear that I will be forgotten. Just writing that makes me feel super vulnerable, like a kid waiting to get smacked with a dodge ball. I want to keep going, I want to be that Suzy sunshine person always believing in good things happening, I want to live longer and find a treatment that works. I want so much yet the one thing that I want most - to never have been diagnosed MBC in the first place will never be possible. We can't go back, no time traveling, only forward momentum! That's what I keep telling myself as I sit and wander the maze.

So in the meantime, I am going to work on the idea of "just be happy". I am going to have hope the Doxil will work, I am going to limit my expectations and be kinder to myself. At least this is what I tell myself today, in this moment. I will wander the maze as I navigate the complicated web of emotions I am feeling, I don't think I will get lost but I hope if I do, someone will come looking for me. MBC and all cancer is a lonely place to hang out, it is my family, friends and Team Jo Jo that helps me crush that loneliness. And for that, I am grateful!

Peace ✌