Hey y'all... it's me...
More and more time is flying by between my blogs and I wish I could credit that on the huge amount of living I am doing every day. However it seems to be the exact opposite, I am stuck in a cycle of doing instead of being. I have been hit by the side effect bus and to be honest, I think the bus ran me over a few dozen times starting in June but it took me awhile to connect all the dots. One could say, I am wee bit slow on the wit these days.
All of this excitement happening to me and around me is making me ponder a few questions. One - is it all worth it and Two - can a person who is facing trauma and distress ever feel full and complete happiness. Now it may seem as if I am going all existential on your ass but I promise you, I am not, well - not completely. It is only that I am finding myself deeper in thought these days as I sit a spell and wait for the side effect bus to pass on by.
Is it all worth it??? Now I know that at this point you are saying "hell yeah it is!" and of course I am going to agree with you for the most part. Everything is worth it for my family and my babies and then there are my beautiful friends, my community, myself! But these last 5 months have hit me pretty damn hard - I am plugging holes in my leaky broken bones, as soon as I get one under control another leak springs open and something else is causing chaos in my body. It is a fucked up game of Twister I am playing - me against MBC. In this case, I really don't feel anyone is going to be the winner. The latest and greatest is a mouth ulcer the size of a small island town. It has pulled me off my chemo in order to allow it to heal. It has pulled me away from food, anything solid that is and it has caused an exorbitant amount of pain. It has prevented me from talking - gasp! This particular blow from the side effect bus comes on the heals of dancing an off beat rhythm to my chemo combo. For whatever reason, I have not been able to get in tune with my affinitor / aromasin combo. For each day, I feel good (ish) there are 4 or 5 or 15 I feel "meh" or pain, or feverish, or more pain. Once the sore heals, I will start my A/A combo again and then we get to wait and see what happens. There are 2 scenarios - the side effect bus will hit me again with another sore or I will be spared that particular collision.
As each treatment brings on new, fun and oh so pleasant side effects and the blows begin to get harder for me to deal with; I wonder if I have the muster for what my future holds. I have said it before, each new treatment will become harder and harder on my system and with that I will have to find more and more inner strength to withstand the storms. This is where I begin to wonder "is it all worth it?" MBC is a disease that has a huge variance in life span - average is 3 years however I know of many that have lived 5, 10, 15 years. But to what cost is it on their mind, body and spirit? Will I be able to handle what the future holds in store for me? I know, I know I am time traveling some, I guess I can't help it with how I have been feeling lately. My light is dimmed right now, some of my get up and go has got up and gone and I am working at finding it again.
Do you know that game "would you rather?" Would you rather have a mermaid tale or claws for hands? That sort of thing. Sometimes I feel like would I rather continue forward with each new treatment, twisting and turning to plug the leaky holes from side effects or ride off into the sunset with no side effects but less time. For me, the game "would you rather" is not one I could ever play, I would be an indecisive, wishy washy pain in the ass. When I look at my MBC and what I am feeling both mentally and physically, I think I could never choose to ride off into the sunset - not at this point at least. It isn't time for such a drastic, intense, important decision. So where does that leave me with the question of "is it all worth it?"
I think it leads me back to square one. Maybe I need to try to take up yoga again so I can be extra
bendy and twisty for my never ending game of Twister. But seriously.... I think the answer to this question is somewhere in my mind, back to changing the narrative but also changing the expectation level. As I am writing this blog it is exactly one year, six months, and one day from my MBC diagnosis. And as I can say that I have grown and evolved, I think I also have been riding my expectations pretty damn high without even knowing it. I want peace in my heart, peace around me, peace, love and light for everyone I love. However, for the one person I should hold with the most grace, love and light - myself - I think subconsciously, I have been expecting that I should be as strong, as vibrant, as full of energy and stamina, and as robust as I was prior to my MBC diagnosis. That's pretty fucked up! And unrealistic if I were being hands down, straight up honest with y'all!
The reality that I have been pushing back on hard as balls, is that my meds are some seriously strong ass shit. All of my meds, MBC meds, migraine meds, meds to off set the side effect bus from all the other meds; they all come with a price on my body. It is time I accept that price, maybe bargain it down a little, but still find a new set of expectations that keep me from feeling as if I have failed repeatedly. Here is the tricky part and again I will say this is the mind fuck that MBC brings to the table - there is a fine line between the balance of lowering the exceptions in order to find success without completely throwing in the towel and giving up. And the MBC roller coaster circles back to practicing balance, this is something I worked on early on in my journey. It's funny how most things in our lives are circular, we all come back to the same puzzle again and again. Balance in mind, body and spirit. Now - that I have that figured out, I sure as hell would love it if someone could tell me how to actually BE that person! Come on y'all, I can't do this all by myself... it takes a village!
Can we (any person who has a traumatic disease, disorder or something tragic in their life) ever feel true and complete happiness again? This is the other big, deep, burning question that comes to mind every now and then. It started with a picture I recently saw of myself. It was from a few years back when I was celebrating my cancer free life - HA! little did I know what my future held. In this picture I was laughing and smiling and there really was a sparkle in my eye, I look at that picture and I see happiness, true and utter happiness. When I saw it, I looked at John and asked him if I would ever feel that again? Sadness fell over me like a deep gloomy blanket. I began to wonder about this idea of happiness vs joy. Which one is a state of being and which one is a fleeting emotion that ebbs and flows with our lives?
I think, and I am certainly no expert, that joy is something more of a state of being. Joy is the feeling you have in your mind and heart, even if something sad is happening to you. To me, joy is being able to see the light at the end of the tunnel, the positive in the negative, the hope in the ruble. Happiness is an emotion that flows over and through us as our lives evolve, ebb and flow, and organically change. Happiness is seeing something beautiful, laughing so hard you want to pee your pants, a fiercely tight hug filled with love. Happiness is your kids coming home, eating solid food again, or seeing an old friend. Joy is nothing and everything at the same time. It is feeling that it is all worth it, it is holding on tight without giving up, it is knowing that there is a community holding you up in spirit and allowing those feelings of pure joy carry you through the times happiness isn't flowing your way. Joy is something more nebulous to me, it is a feeling that must come from within without a tangible act to react too. I know, I know, it sounds like I took one too many tokes on the happy pipe.
While I sit here and type, I am thinking of something I recently posted. I said, each day is a win for
me. That sentence, that one simple sentience is something I must not forget. Each day is a win, cancer affects so many, young and old, babies and kiddos, moms, dads - no one is immune and as they continue to follow their path, I must continue to follow mine. For right now, it is all worth it and part of my homework is to find that sparkle again. To twinkle amongst the debris that cancer deposits in my life and my families life. And to never allow cancer to dull my shine because damn it... IT IS ALL WORTH IT!
Peace ✌
Jo
