What goes up must come down, the laws of gravity exist in all aspects of life, even on the Mighty Metastatic Coaster. So as I sit at the top of a fairly high peak, my eyes are wide with wonder, the azure blue of the sky, the white puffy clouds, the soft, cool breeze on my face, I am full of some seriously good JoJo MoJo. Then without will or reason, the coaster decides it is time for a little bite of reality - "you are looking a little too comfy up there" so the coaster starts to teeter forward and now I am facing downward. No longer do I feel the uplifted high, now I am only thinking of holding on tight as the ride is about to get bumpy.What's with all the metaphors? Is it fair for me to say, I don't know but those words have been swirling in my head for a day or more. From my last post I hope you could ascertain there were some awesome things happening in my little corner of the world but then - well - shit got real again and I was yet again reminded that life will never quite be the same. I know I have said this before, we all have our own bag of shit that we carry. Everyone has something in their life that might make it less than bucolic and if you don't and if you can honestly say your life is 100% fabulous - then I am genuinely happy for you. I also might try to bribe you for your secret.
I have said from the beginning that I do not want to be defined by my cancer. I do not want to be seen as cancer yet it seems that maybe I have an unrealistic expectation. Cancer certainly doesn't define me as I look at myself but I am learning it is probably harder for others around me to see anything but my cancer. They see me as a conjoined entity, one cannot move without the other. You have no idea how greatly this saddens me. Cancer will always be a part of me - for shit sake it has infiltrated my body and has taken up camping rights. But maybe this is where I am at fault. I have tried so hard for people to see ME not my cancer but maybe this will a better visual for y'all. I carry around my cancer in a bag, it isn't an extra appendage but it is something I cannot leave at home. So I have decided to place my nasty little fucking cancer in the MOST amazing Louis Vuitton bag. In my mind's eye I picture this image. Trust me, this is the only way I'll ever have a Louis Vuitton bag - LOL! I always have to carry this bag with me but many times, I can set it down, put it aside, and just be ME but cancer will still be there quietly waiting for me to pick the bag up again and move on.
Here is another reality. When you are handed this diagnosis, Drew Carey does not walk into the room shouting "congratulation, you are now metastatic, here is your manual, list of rules, and guide book, enjoy the ride". There isn't a manual, no one tells you HOW to do this so I have had to go on my gut instinct. Does this mean, I will make mistakes - well fuck yeah I will. Does this mean that maybe my way of doing cancer isn't going to be the same as another person's way of doing cancer? Of course, everyone has to go at this in an organic fashion that works for them. Will I do things that some people don't agree with - talk too much, write too much, use marijuana, ask for help with meals, cry too much or not enough, work outside of the home or not, dwell on death or not, be too hopeful or not hopeful enough. All of that is going to be true. Everyone is going to have an opinion or judgment, I will not be able to escape that. Some might even say, I am doing this for the attention. If I was looking for pure attention I might go streaking through the neighborhood or start singing karaoke - both of which I am 100% sure isn't going to happen - ever LOL. But know that the choices we make as a family are what we feel is right for us as a family at this time. It may change down the road, but for always, we are doing our best to look out for what our family needs in the moment we are living in. This includes my writing. I write to heal my soul, I write to help others know they are not alone in their grief, I write to share my journey and provide updates on my physical, medical, emotional, and psychological progress. I write to hopefully make someone laugh.
Let me share this with you - every day for me, is like the movie Groundhogs Day or 50 First Dates. I am not saying this for pity, it just is. I wake up, I assess my body and how I am feeling, I put my feet on the floor with eyes open and BAM - oh yep, I got this little cancer fucker in my body. Does it change what I do for the day? No, I still get up, get Jack off to school, do housework, errands, work some, doctor a lot, workout, and simply be. It may seem easier for me as I am not working a full time demanding job, but trust me, it isn't easier. While I am doing all of these normal things, I am reminding myself to breathe, to find grace, to find compassion, to not dwell or time travel, to meditate on calm, to not over stress about running late, missing the green light or picking up the wrong shit at the store I just went to for the second time that day. I have to work hard at being positive and hopeful because damn it, I want a miracle, I want the next best drug to help all of us. I have to listen within to what my body is saying and take the time to rest - BAH - who wants to do that - BORING! I have to balance paperwork, bills, financial worry, I worry for my kids - I am just like everyone else but only a little off. We share these things in common, my life doesn't seem that different than yours I would assume - again, we all do these normal activities except we all have our own bag of shit to carry as well.
Also, please know I am not bedridden. I may have to pick and choose my activities to ensure I don't have an overly long day or rest up some if I want to go out in the evening. But the most important thing to remember is I walk, talk, go out, eat, sleep, shit, shower, and repeat, just like everyone else.
Here is the difference... most people, not all but most, can walk away from their bag of shit for a little while. They can choose to leave it at home, go out with the ladies or guys and just be. I, on the other hand cannot. I am like an airport - Team JoJo International Airlines. Only this airline, you cannot check your bags. All bags must be accompanied by their owners at all times. Do not pass your bag off to a friend or family member, it is your bag and your bag alone. You can never leave it behind. So what does this mean? I do not ever get to leave my Louis Vuitton at home or ask someone to hold it for me. I wake up with it in my bed and I tuck it in at night. I cannot leave or walk away or get a break from my bag of shit. SOOOOO - at this point you are wondering why the fuck I am telling you all of this. Life may be revolving and moving forward and it may seem as if I am standing still but that is not the case. Forward Ho for everyone - just maybe at a little different of a rhythm.
This is where things are going to get a little weird. As hard as this may seem, remember normalcy is the best way for me to forget about little ole Louie. So that means, my cancer doesn't have to be the focus of every conversation. I can go out and not talk about me - if you recall, I'm actually quite shy. Being around people, laughing, working out together, having a meal, going to a movie - just being remembered for ME - allows me to forget Louie for a while and push it aside on the floor or under the table. One of the best things happened to me the other day. A gal walked up to John and I and asked about Jack in school, asked about the girls, we asked about her kids, we talked football and crosstown and then she quietly slipped in for me to keep on writing because it is so helpful to some of her friends who have this nasty disease. I wanted to grab her by the face and give her a big smooch - not because I have lost my marbles but because she didn't lead with my cancer. She didn't have to ask about my cancer because she reads my blogs and FaceBook posts. She just talked to me like she would any other person and that was AMAZEBALLS!
Does this mean I expect different treatment from people. No, that is not the case. Here is something else that may come off a little odd. Another friend said to me - "we are similar, in that with all of our involvement and volunteering, we have hundreds of acquaintances and probably a smaller circle of close friends". I never thought of it quite like that but here is the truth - I VALUE each and every one of you, no matter what your "role" is in my life. I try not to attach labels to any level of friendship but does that mean that I feel as if I should expect an invitation to Thanksgiving dinner from each of you. No... that would make me a little goofy. Here is what I will say to that - if it feels right for you to reach out to me or John and I to go out - then do it. We would love that. I hope those of you who are a little closer to us would want to do that. But PLEASE KNOW there is NO expectation for people to treat me different. All I want is to be remembered and not put on a shelf to only occasionally be pulled down to play with. But because of my little ole Louie, I am more gun shy to set up outings and adventures, I know everyone is busy and I don't ever want to put anyone on the spot or over impose myself. Basically, this part wasn't covered in that nonexistent cancer manual either.
People often ask me "what can I do to help?" Some are making meals, picking up an errand here or there - I can't tell you how much that helps. Some encourage me to walk or do a workout with them - that's awesome - we all need to help hold each other accountable in our fitness goals. Yet there are sometimes, I say - I don't know right now because things change and fluctuate daily, weekly or even hourly. To those folks, I say let's get together. I promise I won't burden and unload my cancer woes upon you and we can have a little fun.
Life expectancy is a tricky thing. Anyone can say, we don't know how long we have but for some of us, it is a bit more on our minds. Do I want to be the miracle metastatic patient who lives to be 80 years old - for FUCKING YA, I DO! But I live my life differently because we don't know. I know it may be easy to forget that or simply easier for all of you to not face it but again I have to live with this knowledge now that I have this disease. That is why I have a Life List. So I can experience life now before...
I will tell all of you what we have shared with our kids and our family. We don't want anyone to look back on a time in life and feel regret. Seize the moment, seize the day, seize your family and friends because at some point, it will change.
Jo
No comments:
Post a Comment