In the past, my life was spent sometimes thinking about the past, other times on the present, and mostly on the near or distant future especially when you live a busy lifestyle and constantly have notifications popping up on your phone from you calendar or looking at lists of things to do, etc. Things aren’t that different since my diagnosis, but yet they are.
After almost 6 months since my craniotomy resection (wow, has it really been that long?), I am trying to train my brain with my new normal, but unfortunately, with a brain malignancy, there really isn’t a new normal. It’s a matter of wait and see what is temporary and permanent, but that can take a lot of time and while on treatments, it’s a slew of questions: is this from the radiation, chemo, anti-seizure medication, supplements, diet or brain damage . The list is long. So, it’s really a lot of new this, new that.
I feel like my brain is a dumped out puzzle laid out before me with so many pieces, but if I I were to try to put it together, it would still have pieces that are missing that might be found later that were stuck in the box or fell underneath furniture or chewed up and slobbery in the dogs bed. But, there will always be the pieces that won’t fit and there will always be pieces that won’t be found because with radiation, wherever the brain was exposed to it, I will never regenerate new brain cells like a “normal brain does”. Man, am I glad that I never did drugs because I would be up shit creek if I had lost brain cells in college. I need all of the cells I can keep right now!
My last MRI could be a number of things that we are waiting to maybe have some answers to on 9/11/17 (yeah, your read that right). I know you’re thinking what a depressing day and it sure is for our nation, but it’s even worse because that’s also the day last year when we lost my brother-in-law to Pancreatic Cancer. My poor husband and kids. But, I am hoping for good news, but it’s the brain and a lot of times even the best Neuro teams in the world do not know what they are looking at. I am hopeful that it’s not what remains of the tumor, but if it is that we see shrinkage. If it’s Necrosis, then that is permanent brain damage and affects the central nervous system and the side effects can begin to show up months to a decade later. Of course I think, wow, if I survive a decade AND wouldn’t it be grand if I have no brain tumor recurrence then I guess I’ll accept that diagnosis should it come. There is much more of what it could be, so I feel like those pieces are probably sitting in the box.
Then there is the day to day events where I am in a fog especially while on chemo and I forget when I am pouring eye cream out of the tube, to put my finger to catch said cream and just watch it as it flows to the floor. The days where it feels like bugs are under my scalp crawling around in my brain, which is most likely the nerve endings just trying to make their way and finding their own puzzle pieces and where they fit back together.
I thought I would be that person who breezes through chemo because I was determined to. I was going to be that person who continues to smile through it all, mask my discomfort, exercise, keep eating my regimented diet of kale, kale, and more freaking kale (can you tell I really love kale), a positive attitude, prayer, keeping my platelet count up because I have done so much research (turns out that’s not so easy) and drinking a ton of alkaline water. Well, let me be very honest, this last round of chemo knocked me on my ass. I keep a journal of the date and side effects I experience to discuss with my Oncologist and for my family to go back and look through should I have a major reaction. I will not go into many details about the side effects (it’s like one of those medication ads on TV where the voice over is listing the side effects and you say to yourself, “Oh, I would just rather have (insert illness here)”. Those puzzle pieces are under the table and I’ll grab them after my last round of chemo.
I did mention the feeling in my brain where it feels like something under my skull crawling around because a few nights ago I had the sensation on my leg while laying in bed. It freaked me out and as I looked down, there was an actual bug crawling on my leg. I HATE bugs. I am SCARED of bugs. It was black with a lot of legs. I swatted if off of my leg, but automatically thought, I have never in my entire life been so grateful to have had an actual bug crawling on me. I didn’t even get out of bed to find it. I just told it, “You have a home here”. Of course now every time I feel an itch or tickle in my ear, I’ll wonder if I let a bug get into my head, but at this point, I figure what damage can come of that. If anything, maybe it’s the cure to brain cancer! That puzzle piece, okay that fits just right!
One of my biggest challenges is that when people see me, they think because I’m out and about or look healthy that I feel good. For the most part I do. Physically, when I am not experiencing pain, fatigue and nausea and the other side effects from chemo, which fortunately have not last for really long stretches of time I feel pretty decent, but in my head-oh, my if someone spent one minute in my head they would be begging to get out of it within twenty seconds or less. There is no way to describe how overwhelmed I feel at times and depending on the places I am in or the people that I am with. I have found that being very honest with people and letting them know what I am and am not feeling up to has been my greatest social achievement so far. I cannot multi-task 99.9% of the time. I cannot manage being with more than three other people at a time or I cannot follow conversations and then I feel very frustrated and just begin to tune it all out and want to go hide out. Those puzzle pieces are on the table just waiting to be fit back together at some point or at least I feel hopeful for that.
I felt overwhelmed before my diagnosis keeping up with schedules, work, family, kids, appointments, etc, but you add on that school has started back up and it’s like what I imagine my brain would be like on crack. I wish it was still summer vacation because not only do I love hanging out with my kids, but things were a lot easier on me. My teenage daughter could drive me wherever I needed to go during the week, we could sleep in, etc. Now it’s not just a barrage of schedules, but the figuring out the logistics of getting my twelve year old to school, home from school, appointments, extra curricular activities while I cannot drive is a daunting task, but through offers, generosity, and me learning to ask for help, those things are all covered. I have a lot of friend puzzle pieces that fit just right and they are all shaped like hearts!
Then there is just the day to day task, the stuff we all go through in our busy lives and lot of those puzzle pieces I have begun to throw them in the trash because I realize I will never be the same again and I am coming to terms with that. I have a hard time convincing others of these things because they want or need me to be the same, but I have no control over that. I understand it. I just can’t deal with it nor do I want to. I am more present, I am more compassionate, I spend my time more meaningful to what is good for my soul, body and mind, I spend my time working on my relationship with God and understanding that I want to use my time doing more for others because of the signs I have been shown, I still feel the need to make people laugh especially through hardships, and I am okay with letting a lot of things go that just do not matter. I will never have a complete puzzle, because things are forever changing, but isn’t that the same for all of us? If I you take away one thing from this post, I hope it will be this:
Whether you have been diagnosed with an illness or not; you and you alone have the choice to decide how you want to live your life, whether it be one day or one hundred years. Use your time wisely. Live so that you can look back with no regrets. Don’t hold onto resentments or grudges. Don’t be a people pleaser because then you really aren’t being genuine. Smile at others no matter what you have going on in your life, there is someone out there that is suffering worse than you and that smile may be just the thing they need that gives them a glimmer of hope. Take photos and videos with your friends and family for cherished memories and don’t let your vanity get in the way (no saying, “well, when I drop ten pounds then I will take a family photo” or in my case “when my hair grows back” or “when I’m off of these steroids and less puffy”), but also keep certain moments sacred with no cameras and no posts on social media. Stop and listen, really listen to everything. Be grateful.
Make your own puzzle. I know when my puzzle is complete, it will have missing pieces, but I know it will be beautiful, weird, and hopefully amusing. If it has cats anywhere on it, then I will know that I really did have major brain damage because I am not a fan of cats! Large wild cats, sure, but cats sitting on a window seal or playing with yarn in a basket – it was brain damage.