Monday, August 11, 2014

Dancing Through Life

Oh you guys, I feel like such an ass. The other day I mentioned that cancer bloggers seem to want to reach out, and really help others, effectively implying that people who have cancer and don't blog don't have the desire to help others. What an idiot! Obviously that's not the case. People reach out, or help out in different ways. Some are communicators, others are fund-raisers (I love a good play on words), some are connectors of people, etc. Some, of course, are barely hanging in there and just need to focus on themselves to survive. And that's exactly what they should be doing. You learn quickly upon diagnosis that no one is going to save you, but you. So in order to help others, you have to put yourself first. Good god I am a fabulous foot-puter-in-mouther. With the bloggers from this past group in NBTS I found that correlation, of wanting to help other cancer fighters, but I didn't mean to isolate everyone else. That's been bothering me since I posted. I recognize that we all have our ways of contributing in this world. 

I hate it when I say stupid stuff, it makes me feel like a complete moron. So please forgive me.

On another note, my bud Jess was in town this weekend, the one who shaved her head with me when I was diagnosed. The one who immediately flew from Abu Dhabi to be with me. The one who has seen me at my worst (shaving my legs for me when I was unable, or even wiping for me because I was out of brain surgery and didn't remember how). Jess came to extend the birthday celebration. This year is seriously chalking up to an epic start! The older we get the more amazing the friendship grows. I assume it's like a good marriage where you both grow, but grow in parallel, separately, but with mutual excitement and wonder. I'm lucky to have her. She just gets better and better, and when I don't think she can impress me any more, she does again. 

We did yoga, and barre, we went kayaking, and picked blackberries; we cooked fabulous meals, and went down to the lake to play dominos. We watched movies, and laughed, and relaxed. She will be finishing her nursing degree in December from John Hopkins, and she practiced by dressing my wounds (three more bad moles removed). I trust her with my life, and most of all, my spirit.

Energy surrounds living things, you can feel it. Sometimes, when you leave a person, you feel exhausted, drained. They pull your energy and you feel zapped. Jess is a battery charger. Our energy is symbiotic. It's an awe-inspiring thing, of which I am extremely grateful. She has a way of knowing how to handle the crazy schedule of pills, and chlorotoxin treatments, but takes it all in stride. It's 30 minutes here (pill time) let's distract ourselves with a yoga video; 30 minutes there (chlorotoxin time) let's rest for a bit and put our feet up. Being with her is like dancing through life. Tedious things become fun; responsibilities become accomplishments.

Thursday, August 7, 2014

Winking at Fear

Yesterday, I turned a year older. And, it has officially been 4 years, 3 months, and 25 days since I was diagnosed. I have had three brain surgeries. I have tried almost every brain tumor diet on the planet. I have gobbled hundreds of thousands of pills. I have researched. I have exercised. I have meditated. I've dodged seizures; I have endured them. They've injected shot after shot to boost my immune system, and to fight my tumor. I've done the high dose IV drips. I drop venom in my nose, and I swish it in my mouth. I've traveled the country, and around the world, to meet with doctors for second opinions, for surgeries, and treatments. All that, and so much more, and yet I feel like an imposter, like this isn't my life.

I got the email yesterday, a great birthday surprise, that I am included with five other bloggers to be posted on the National Brain Tumor Society website. As I read the other posts I felt like a voyeur, like I didn't belong. It's confusing because I relate to so many of the things that they wrote, yet, with others I have no experience: radiation, chemo. It's as if they were long lost family members; we had never met, but somehow I recognized myself in their faces. I loved the variation of stories, of perspectives, of journeys. The voices, although different, carried similar threads of hope, fear, frustration, gratitude, and determination. Everyone had gone through a lot, whether it had been surgery, or treatments, or a combination. But some of these fighters truly astound me with what they are conquering, what they're capable of enduring. I read the blogs yesterday but I keep coming back to reread them, trying to soak it all in. When I was first diagnosed I tried support groups and they were horribly depressing. In contrast, I'm finding that those who chose to blog about their experience aren't just wanting to connect, they want to help. They want to reach others, far and wide, in the hope that their experience will save another some trouble; to help connect the dots faster.

I am now 34 and it feels old. It feels solid, grounded in my situation, in my brain tumor reality. Kind of stuck. And in my life of contradictions, I feel removed, and floating. I was emailing, the other day, with my cancer buddy Lo, and we were recognizing how you get diagnosed, then everything stops. You keep swirling through scans, and treatments, and scans, and treatments, and year after year you get older but your world stays the same. You try not to, but from time to time, you can vividly imagine where your life would have gone, the road that was washed out before you. 

This year, to distract myself from my inevitable hamster wheel of treatments, at the recommendation of my buddy who did the same for her 34th year, I have decided to do as many things as possible (within reason) that make me uncomfortable, that scare me, that push my limits. I envision lots of nervous laughter, and triumphs. Probably a good deal of sweat, and awkwardness. Living with cancer/brain tumors makes it impossible not to live in some state of fear. More so than most. I challenge myself to open my arms this year to fear, to look it in the face, cock my head, and give him a wink, then jump.

So cheers to another year! This time, instead of cancer pushing my limits, always cancer driving my fear, or cancer making my life uncomfortable, I will take control and steal away some of cancer's power. I'm ready for a different type of fear, and a better adrenalin rush.

Here's a few photos from my birthday celebration, checking out Crystal Mountain, with Dan (including my attempt at a photo bomb). The year is already off to an exciting start... 

Friday, August 1, 2014

New Blog Page

Hey Guys, I've been working on this page for a bit. I'm trying to make it easier for tumor fighters to navigate my blog, and the tumor world. I'm pulling essential information to the front page of the blog so that newly diagnosed/newly recurrent tumor fighters don't have to sift through all of the posts to get pointers. I've copied and pasted my list below. If any of you tumor fighters (or anyone in general) have suggestions, I would really appreciate it. I know that I wish I would have had this information when I was originally diagnosed, it would have saved me a lot of trouble, headache, and disappointment. That's what I'm trying to prevent for others.

What to Know About Brain Surgeries

This is a list-in-progress of things I've learned throughout the past few years of fighting brain tumors (feel free to add suggestions in the comments section):
  • You want a neurosurgeon/oncologist that is incredibly familiar with your specific diagnosis (subtype of tumor, molecular abnormalities, etc.). 
  • You want a neurosurgeon that performs 300+ brain tumor resections a year.
  • You want a neurosurgeon that is actively involved in clinical trials for your specific diagnosis/pathology. 
  • Don't be afraid to email doctors, or tumor fighters with websites/blogs to ask questions. Especially if you find a promising clinical trial, look for the lead doctor's name and seek them out and ask questions. Doctors that are conducting clinical trials are very passionate about their work and are happy to help.
  • After your initial MRI (with diagnosis) but before your surgery, your doctors should require a fMRI to make sure that your tumor isn't located in a delicate area of your brain.
  • What is a fMRI? Click for information.
  • If your tumor is located in a tricky area, the doctors may request a partially awake surgery to keep your healthy brain in tact
  • What is a Partially Awake Craniotomy? Click for information. It sounds scary, but you don't want to lose any of your healthy brain, because once it's removed you can't get it back. Depending on where your tumor is growing, if your neurosurgeon doesn't map out your brain, and do an awake surgery when needed, they can cause severe damage to your language areas, your movement, heck, it could really damage you for life.
  • If you have a low grade glioma, or doctors aren't sure, they should request a F-FDOPA PET scan to determine the mass. F-FDOPA PET scans are only available at top brain tumor centers. If you ask for a F-FDOPA PET scan and your doctors aren't familiar, or if they don't have the capability, ask for a referral to a center that does. You may have to travel for it, but trust me, this is your brain. It's worth it. This is especially important for recurrent low grade gliomas. A F-FDOPA PET scan can determine whether an area on a MRI is showing scar tissue, necrosis, or if it is active tumor growth. That is imperative when doctors are wanting to do another brain surgery, or are pushing for treatments like radiation or chemotherapy. You want to make sure that you truly have a tumor growing in your head before you damage your body. I have heard of patients going in for a second brain tumor resection only to find out after the fact that the image on the MRI had only been scar tissue.
  • What is a F-FDOPA PET? Click for information. ("F-FDOPA activity may identify tumor not visible on MRI")
  • Before you go in for surgery ask for your tumor tissue to be flash frozen instead of being put in the standard paraffin wax. That will allow your tissue to remain viable for immunotherapy treatments in the future. Also, ask that they don't use your tissue for testing, that it remain in tact.
  • What is tissue banking? Click for information
  • My most recent tumor is being banked at UCLA. It was flash frozen. It's a miniscule amount (0.17 grams compared to the 2 grams necessary for a DCVax vaccine), but as science progresses less and less tissue will be necessary for personalized tumor vaccines. A little bit is better than none. And if your tissue is stored in paraffin wax, which is the industry standard, it is useless for immunotherapies. 
Okay, that's all I can think of for now. Please leave comments with the things I've forgotten, I appreciate the help. This list is for the sole purpose of helping other brain tumor fighters. We're a small group, and I know that I've learned a lot from my peers.