Be Unapologetically, Apologetically You!

           

Hi, I know it’s been a little bit! I had surgery on April 12 to remove the tumor from my right forearm. It was a successful surgery, they were able to remove the entire tumor! This was by far the best surgery I have ever had. Dr. Ko at UW neurosurgery changed my life for the better, he was able to alleviate some of my pain. I no longer have the shooting, searing pain in my hand, it’s just numb; I will take numb over excruciating pain any day! Now to fix my left shoulder, back, and knee….or how about a cure so I can stop growing these painful, asshole tumors! Dr. Ko has told me many times now that he won’t do surgery on my shoulder, too many tumors, and can’t guarantee which one is causing the pain. He also stated he will not chop off my shoulder, even with pleading. So I am on the hunt to find other methods to either get ride of these tumors, or at least something to help with my pain. 

I met with a radio-oncologist at Providence Hospital this past week to discuss the new, state-of-the-art, Edge® radiosurgery system. This machine is designed to target inoperable tumors, and to help reduce radiation. Unfortunately, I am not a proper candidate for this type of machine. The doctor was completely honest with me that there are more cons for me than pros for this type of procedure. I was super hopeful that this machine could help take the tumors out but it will only stop them from growing. I will still have tumors in my nerves continuing the pain, along with really bad side effects from the radiation. I will admit I was a lil crushed. I’m needing something, anything; I’m so desperate at this point. I’m grateful the doctor spent a long time with me, and even shared a few tears; you could tell he truly wants to help people. He told me how amazed he is by my attitude, and  I’m such an inspiration. I am always taken aback by these comments, even typing it out now seems weird. 

I know that there are people out there that choose to be miserable; but I can’t even imagine how my life would be if I chose to be that way, and let this disease destroy everything. I can’t even imagine how worse off my pain would be. It saddens me that people would choose more pain though. It’s not easy trying to be positive, and see things differently when your pain is through the roof, so I get it. In those horrible moments you’ve just gotta stay present, and not think too far in the future…OH and watch something that brings you joy and makes you laugh. If you can’t find the humor and beauty in everyday life, then life will be miserable. So I’ll give you an example for how I cope sometimes: Imagine you’re lying on the couch watching a funny show with your love. You both are laughing and enjoying the moment, then all of the sudden a searing pain stabs its way through your shoulder, up into the neck, straight to your brain. If you’ve ever electrocuted yourself, it’s a pretty similar feeling. Well imagine that happening at random moments, every day without warning. You have to acknowledge the pain, but you can’t focus on it or then your mind starts to feel it more and more. So in the process of trying to not focus but being mindful of the pain, it can become draining emotionally, not to mention physically. So this is my constant state of mind, mindfulness of the pain but trying to live in the moment and be positive for my own sanity. I practice meditation, which I suck at but I enjoy the audio-guided meditations, definitely has helped me become more present. Sometimes I am so exhausted and drained that I break, and I allow myself those moments but I choose not to be like that constantly because life would not be enjoyable. Can you also imagine trying to live or be around someone like that? No thank you. So I choose positivity over misery because I will be in pain either way; much rather be happy and in pain than miserable and in pain. Doesn’t change my situation but it is what it is, nothing I can really do but move forward. So onward towards a different direction. 

         I’ve been avoiding writing because after the meeting with the radio-oncologist, not sure what to really write about. My disease is progressing; some friends came out and I couldn’t even go on the hikes with everyone. So that fuckin sucked and was pretty heartbreaking. I’m processing it the best way I can, trying to find other joys! I also learned on Mother’s Day that a wheelchair helps me out a ton. We took my mom to the zoo, and rented a wheelchair for myself. Chris pushed me around, and it was a learning experience for the both of us. He wanted to make sure I got to see all the animals. So he’d push me right up to the enclosure, and sometimes people were there so we’d wait our turn but I ended up with so many butts in my face! Was definitely a different perspective, that’s for sure. Don’t get me wrong, I am furious that this is happening. For fuck sakes, I can’t even go to Harry Potter Leaky Con in Dallas anymore (it's a comic-con for Harry Potter, would you expect anything less from me, lol). I dread having to drive to the store that’s 25 mins away because of the amount of pain that drive will cause me. What will be next, the place I get my medication at? Will a measly 7 miles be too much to drive? Just sucks. 
        I'm sorry if it seems I am complaining a lot, I have so much to be grateful for. Living in the forest, I get to have a lot of "national geographic moments". You know those once in a lifetime, close encounter type of moments, that usually rarely happen with nature? Well, I get those type of moments quite often living out here! For instance, I had a bear walk across the road right in front of my car. He just leisurely made his way to the other side....hey guys, why did the bear cross the road? To get to the other side to the lake! I know lame; back to the story: The bear even stopped in front of my car and looked at me. I totally geeked out! When those things happen, I get so overwhelmed with excitement and happiness. How can I complain about life? Chris on the other hand is super jealous because he didn't get to see the bear; and I was an idiot! Instead of taking a photo or even a video of the bear, I called him. Haha like he would be able to see the bear through my excited voice! I just wanted to share my pure happiness with him!

         So a lil off subject but I have become such an apologetic person, it’s ridonkculous at times. I will apologize for shit that doesn’t need apologizing for, but there are times it is called for. I had my 2 month check-up with the doctor for my forearm this past week. Now keep this in mind, I use humor to cope with the pain and the vulnerability that comes with it; so I can be really weird and awkward at times. Well, at the appointment I was in a lot of pain, and had already broken down; which I fucking hate doing but that’s an entirely different subject. Anyways, I’m trying to joke with the doc and his nurse practitioner, and I’m just not that funny so it comes off either inappropriate, or flat out makes no sense. Then I can feel the damn awkwardness, so I start to apologize for how weird I am lol. Which in turn makes it more of an odd interaction….just a shit show. I’m trying to work on it, but I’ve become more aware of my vulnerability that I never really use to have. Feeling physically weak brings a whole different realm of feelings and thoughts; it’s crazy. I'm not a huge fan of this whole apologizing for pretty-much-nothing thing; but clearly, it's part of this whole journey I am on....just another learning process. That's what life feels like, just a big cluster of learning experiences, good or bad.  How you learn and grow from those lessons is up to you;  it's all in the state of mind, and the brain is a powerful tool. Remember this, a positive attitude cultivates love. We need more love in this world; I truly wish nothing but peace, and love for the whole planet. Wish I had the power to make it so but I don't, so I practice positivity constantly. I can't change the world, but I can help add light where I can.