Green juices, dark green, leafy vegetables, wheat grass powder, spirulina powder, Artemesia capsules, and seaweed are some of the main staples in my daily diet. The task of washing, preparing, and ingesting these foods isn’t always easy especially when trying to mask the flavor with oh yeah, more green crap. I drink so much spinach and kale, I’m surprised I’m not as green as Kermit the frog.
It’s my burden to bear and I do feel very healthy and my skin has never looked better with the exception of being stretched out from the steroids when I didn’t have any wrinkles or lines on my face, but I also looked like a Cabbage Patch Kid with my puffy cheeks. Did you notice that I just made another green food reference when describing my past appearance?
I don’t want to claim that I am green with envy for those that can do easily what I used to be able to do with ease because I would never want anyone to go through the experiences I have or my fellow members of the brain tumor club or as I will call my next rap album TBC….OH you know it’s coming! While I’m on the subject, for those of you that do not know, I love a lot of rap music and I can rap! Like really rap, well I used to. Once I was in my mini-van stopped at a light on a cool day, sunroof and windows open and I was just rapping away and the speakers were thumping (is there any other way to listen to rap?) and I looked over at the car next to me and there was a mom that I knew from my kid’s school and she informed me that they don’t own a television and only listen to classical music. I quickly turned the music down and just looked straight ahead, but I’m pretty sure she saw me and regrettably heard me. Since my surgery I cannot speak very fast, let alone rap. Sometimes I try, but I question will I ever rap again.? That has a nice ring to it for an album title as well.
While it might come off as a strange thing to reference, this is something that I enjoyed, one of my guilty pleasures of being alone driving in my car, or an occasional karaoke performance. I am unable to drive. It’s just one of the small reminders of the limitations that I now live with and adjust my life around.
I hate when someone tells me they can imagine what I’m going through or how I feel, whether they’ve had cancer or not. The first thing I want to tell them is I hope you never know how I feel. This is a frustrating statement. Can they really understand? Everyone is different. One day I was in my car driving to the park with my kids and dog in tow, and the next thing I knew I was waking up in an ambulance being told that I had hit a school bus and just a short while later being told that I had a brain tumor the size of a ping pong ball in my left frontal lobe. I had a few other seizures that scared the hell out of me because I was conscious during those before my craniotomy resection. I was in pain and came home with a matted hair blob of dried blood, a massive incision that I knew would leave a scar. I live my life by numbers now miligrams of supplements and medications I take at certain times throughout the day, alarms that alert me to take my medication, increases in anti-seizure medication when I have seizures that leave me feeling tired before I even attempt to perform a task such as taking the silverware tray out of the dishwasher and trying to sort it and place in the drawer. Sometimes I just stand there staring at it wondering where it goes, often forgetting the name of the utensil. The numbers of my labs which I have blood drawn every other week or sometimes every week, I get an IV in my arm and stare at suffering people while I wait for infusion for hours every two weeks. I have to look at dates and times to figure out appointments and who can take me. My blood pressure, my weight, the list goes on an on. I have to now take blood pressure medication because my BP elevated as a side effect from the Avastin, but I have to do it so that I don’t have a stroke. What is my pain level on a scale of 1 – 10. How many sores are there on my tongue? Then getting an MRI screening every 8 weeks, another IV and waiting to hear if the tumor has regressed, progressed or is holding stable. I also get anxiety over seizures. It’s always in the back of my mind and I try to push it away and when I do have them I just tell myself that I’m okay and it won’t last forever and remain very calm. It’s not easy, but I feel like God is with me. I should be panicked, but I’m not.
It’s overwhelming to be around a lot of people, which someone who is very good at networking and socializing I now hate small talk. I avoid people that I know sometimes when I see them out before they see me because I know that small talk will wear me out and overwhelm me.
When I think through these statements is when I am reminded that people mean well, but I want others to be aware that each person has their own path and suffers differently and has different setbacks and successes, so we shouldn’t compare ourselves.
I know that people are suffering far worse than I am no matter what the suffering is and I just offer “I’m sorry this is happening. Is there anything I can do for you”. It may be cliche, but it sure beats “I know how you feel”.
I’m not writing this for sympathy, it’s more therapy for me and perhaps educational for someone.
Even with all of this, I say I have bad or rough moments and not bad days. Every day is a gift I get to speak to or visit with someone I love, praying, reading, writing, painting, hiking, practicing yoga, recording a voice over, sharing laughter, binge watching cheesy 90’s shows on hulu, doing laundry, being able to open up and share my tears with others when I feel extremely overwhelmed, and living the best life that I can even if I can’t rap right now.
If you hung in there to read this entire post, you are a saint. Thank you for all of the support and letting me share my feelings.