The C Word

Brain cancer. Brain. Cancer. BRAIN CANCER. Cancer. The C word is so intense, and at the same time it's just a word. I'm 28 (now). 3 weeks later and I'm wondering how could I possibly have just battled brain cancer. How long was it growing in my brain? How did it really start? Was it all the diet coke I drank in college? All the binge drinking I did on my lagniappe year? Could it have been all the processed food and red meat that I have consumed for most of my life? My random bouts of insomnia? Or is it simply a fluke? I have no idea. And neither do the doctors... for most types of cancer. Since scientific research improves everyday --- thanks to technology --- hopefully in the future we will know where it comes from.

The interesting thing about my type of cancer (grade II astrocytoma) is that it's very rare -- only about 1,500 people are diagnosed with them in the United States every year. Most people who get this type of tumor usually survive long after treatment too, but like I have stated before, these guys can grow back. One positive thing is that this means my brain tissue, and tumor, and case will be used (anonymously) for tons of research and hopefully that means it will assist doctors and researchers with cracking the mystery of the origins of the tumor. And eventually help a lot of other people. 

Last week was a rough one. As I was finally coming off of all the medication, I started feeling pretty bad. Monday and Tuesday I had level 10 headaches, I didn't sleep for more than an hour Wednesday night and Thursday morning I threw up twice and then slept for 6 hours. I'm sure the physician's assistant is tired of my paranoid emails about every little problem, but she's probably had worse. Since then, I have actually felt pretty good. I haven't even taken tylenol in the past 2 days. My dad left Tuesday and my mom left Thursday and it was bitter sweet. I was definitely up for some alone time... I've been living alone for 4 years now and usually when I spend a lot of time with someone or someones, it's my choice. But at the same time I was very afraid to be alone and worried about what I would do if something were to happen or if I needed something. Since I still can't drive, and walking more than about 2 or 3 miles really exhausts me, how am I supposed to get bananas and water and other things? But it has been fine, and Jordan has been taking good care of me... again (if he ever has kids, he will make a great mom).

One of things that has really been bringing me down is that I realized I won't be able to play any sports for at least a year. And if you're thinking "Charlie, you're 28, what sports are you playing" I'm just going to tell you that you don't understand!!! hahahah, I play 3 or 4 different co-ed sports year round and I'm devoted to several teams (No Basic Pitches - kickball, The Dodgefathers - dodgeball, and The Chicken Biscuits - softball). I was even supposed to be a captain for softball this spring. I know it sounds silly, but it's one of the ways I stay active and socialize. Even if I could play, I would be too afraid to because my skull is still growing back together.

By the way, you can HEAR your skull growing back together. It makes a ticking noise that sounds kind of like your sinuses draining. The first week back home, it kept me up all night long. Creepy fact of the day.

Jordan and I met with the neurologist yesterday (February 16) for a post-op check up. Dr. Peterson was also very happy with my recovery and, since he and the neurosurgeon make up a team, he already heard about the surgery and my recovery. Shout out to Dr. Peterson for finding my tumor and Dr. Dumont for removing it!!!! It looks like I'll be meeting with my neurologist 2-4 times a year for the next few years to track my seizures/epilepsy. Unfortunately, he did tell me that the chances of getting off seizure medication or lowering my dose was very low, so I'll likely be on Keppra, or something similar, for the rest of my life. The only problem with that is if I ever decide to have children... which honestly is a low possibility because I'm not a kid person and never really planned on having children. - But what if I do become pregnant one day, then what? Again, I know thousands of women with epilepsy have babies every day. Anyway, if I do become pregnant, there is an increased risk of birth defects, it's low but it does exist. And I don't want to do that to a tiny, adorable, human being.

And if it seems like I talk about the seizures a lot, it's because ... in my opinion ... they're the worst part (so far)... but maybe that's because I still fear the seizures. In fact, one of my old friends who has epilepsy told me she wishes she had a brain tumor they could remove that would possibly take her seizures away. The really put things into perspective for me about how inconvenient and life changing the disorder can be. The thing is, epilepsy can kill you but more so by driving or drowning or hitting your head whereas cancer kills you in a slower, more gradual and painful process. The burden epilepsy puts on you is great but not so much for your loved ones - that burden is small (except for the people who are with you when you seize, apparently that's really scary and horrible to watch). The burden cancer puts on you is large, and what it puts on your loved ones is even larger. Neither of them are very fun — both are very stressful. I was hoping to kick cancer and epilepsy's asses but beggars can't be choosers. And I will choose epilepsy over brain cancer any day.

I may never have another seizure again, of any type, but I do still have to be on the medication. That is because before I had a lesion (the tumor) that was disturbing my brain activity, and now I have another lesion (the hole that was previously known as tumor) that will also disturb my brain activity. --- And all epilepsy really is, is a disruption of electrical signaling that makes your brain go haywire. At least when you have a really intense seizure (like a grand mal) you black out and can't feel it. Another interesting thing I learned about seizure yesterday was that the more you have, the more you are likely to have because your brain "learns" to have them. It becomes increasingly easier, and I can vouch for that because after I had my big one on January 1 --- I had 4 more just a week or two after --- To say that I haven't felt "seizure-y" would be a total lie because I certainly have since the surgery. It truly could be related to stress (which has obviously been high), and, since I can't workout, I don't have my usual outlet for it. I haven't had the feeling that I did on the days where I knew I'd have a spasm, but when I get stressed, like really stressed now, my hand "feels weird." I think I will feel that way for a long time though because of the type of person I am but also because all of this is still new. But nonetheless, when Jordan and I were running a little late to our appointment (which we ended up not being late for), I was anxious and therefore my hand felt weird and therefore I was being bitchy to him. I'm also working on the bitchy part but since the steroids have gotten out of my system, all the sassiness is just slightly heightened from the level I used to be on :-). 

Dr. Peterson also kind of filled me in on pathology and why it's taking so long. By Monday, I couldn't stand it anymore so I emailed my neurosurgeon to ask if the results were in yet (and then I refreshed my email every hour about 30 times). I mean, it's been 3 weeks and my inner diva is just throwing a fit. Apparently when they're dealing with a cancerous tumor they do things painstakingly slow for several reasons. Mostly so that they don't mess anything up or miss anything. It looks like one neuropathologist has already looked at it and confirmed it was a low-grade astrocytoma. Now they're sending it off to get a second opinion. And I do expect to hear from my surgeon today or tomorrow, with a few more details about what they know right now. 

With that, now I will meet with an oncology team sometime in the next few weeks. --- Hopefully before I go back to work, because right now I'm doing nothing. Once I'm working again, I will be grading tests and quizzes and making lectures and you know... teaching. --- There are 3 different results I can expect from pathology: 1) they got the whole tumor so with my surgeon and the oncology team we will track the space (via neuroimaging) and make sure the tumor isn't growing back, 2) there are microscopic pieces of the tumor that appear to still be present in my brain in which case we will probably opt for radiation treatment to zap the rest of the cancerous cells, or 3) the results are inconclusive in which case we may opt for radiation to zap the area to make sure no cells remain or track the growth without radiation and see what happens. In my opinion, if they aren't sure they got all of the tumor, I want to radiate it until the cancer cells are begging for forgiveness. I know the tumor can grow back, but I want to do everything possible to try and make sure it doesn't. I'm even starting a cancer-friendly diet, meaning less red meat, more fruits and vegetables, less sugars and processed foods, more whole grains. It's not very different from my current diet, but if there's cake around, I always eat cake. Now, maybe I won't always eat cake, or maybe I will hahaha. And obviously, I gotta kiss the booze goodbye. It's been great booze, thanks for all the memories, but we simply can't be friends anymore. That's not to say I won't ever have a beer or a glass of wine or the occasional martini, but I won't be staying up until 4 am, on Mardi Gras guzzling 6 gin and tonics and sipping on chartreuse ever again. 

If I can be honest, I don't know how I feel with this recent news and development. I mean, I'm walking, talking, laughing, eating, and doing things on my own now, except for driving that is... I still can't legally drive until May and well, right now I don't have a vehicle because my dad is selling my old one... And I guess I still have epilepsy. I may have to get radiation therapy or maybe I won't? I may have brain cancer again one day, or maybe I won't? All these questions are leaving me with more questions, and at the same time it's all completely out of my control. It's very frustrating but at the same time, it's not at all. I guess it's like a lot of other things in life actually.

 But every time I say the word "cancer" I feel completely disconnected from it. Like I didn't really have it — but I did. Or maybe I still do..? And once you have cancer do you always have cancer or am I cancer survivor now? There isn't a guide out there that gives you all these answers. I'm sure a lot of the things will be answered when I do meet with my oncologist though, I just wish I knew when that would be... And the bills have started to roll in, which is even more stressful since I'm not currently working, but luckily my super best friend, Brooke and boyfriend, Jordan have created a fundraiser for me to cover the rest of my medical bills. And once I am back at work, paying for an MRI here and there, and a couple doctors visits every couple of months won't hold the same weight as this recent situation. You can see the fundraiser link here: https://goo.gl/90OOKY . Brooke tells me to stop talking about and worrying about money and I know it's taboo to talk about but the first thing I thought when I found out I had a brain tumor was "OMG am I going to die and if I don't die how the heck am I going to afford this?" Which really isn't how cancer should be, it should be more like "I don't care what it costs, get this thing out of me so I can hug my loved ones and walk my dog and live until I'm at least 75."

Another thing that has happened since speaking openly about my personal struggles with my recent health is that a lot of people, some of which I know really well, have been talking to me about their health issues. From M.S. to lyme disease, to ALS, and even different types of cancer and tumors that people have battled through. It makes me realize again, how lucky I am to be alive and relatively healthy. I'm even walking 2 miles a day already. My goal for the end of February is 3 miles. There is also a situation happening in my hometown, Lafayette, making me realize that my cancer story could have been so much worse. It's the #teambrittini campaign, Brittini is suffering through acute leukemia, and just like me, she went from being healthy one day to finding out she had cancer the next, you can see her story here: http://1079ishot.com/cjs-family-can-use-your-prayers-and-positive-thoughts/. 

Again, I truly believe that without the love and positive energy I have constantly surrounding me, I wouldn't have made it through my sister's murder and I wouldn't have made it through this situation either. It never ceases to amaze me the kindness and love that strangers (and of course all my friends and family) give to me and my family. I don't know what to say other than your prayers, offers of love and support, and well wishes do not go to waste. I keep getting stronger everyday, and my anxiety and feelings of hopelessness are subsiding. In fact, I'm kind of excited to get back to work and a normal schedule, even though I still don't know how the heck I'm going to get around.  But that’s a problem for another day — and a small one at that.