Wednesday, February 26, 2014

And I Still I Smile

It's hard to explain, but my brain is having a very hard time. It's issues with word finding, writing (transposing letters, omitting words), forgetting what I'm doing, bouts of lightheadedness, and organizing thoughts. If I hadn't just gotten good scan results I would believe wholeheartedly that the tumor was growing back for a third time. Of course, these issues have been around since the first brain surgery, however, in the past month and a half it has been increasingly worse. I've tried naps. I've tried cutting back on communication (to rest the brain). I've cut back on activities. I've fiddled with my diet. I've analyzed any changes that may be the culprit. I've discussed it with Dan at length, multiple times, to no avail. I'm just beat. So tired. All the time.

I'm used to being exhausted, but when my brain doesn't work properly it's confusing, distracting, scary, and most of all disheartening. For over a month I have felt trapped in a brain that has gone rogue. I have little control. I can't make it do what I need it to do. I'm just along for the ride, terrified in the passenger seat.

I try to push through, to shower, to create a meal, to do dishes, to pick up the house, each task a triumph. A success. That's what I'm diminished back to, back to the months after surgeries. I keep finding myself in the kitchen, knowing I was washing dishes, but I'm looking at the dirty dishes confused as to what to do with them. I know I need something to do whatever it was I was going to do but I'm lost. I'm confused. I stop. I go back to the couch to rest. I think, and think, and then I wonder, was it a sponge I needed? Is that why I couldn't finish my task? But I don't go back. I know my brain is too exhausted to endure more of the riddle that is my life.

I just want to get back to exercising, to reading and laughing (okay, I'm still laughing), to doing normal tasks without the fear of a brain going haywire. There is such a beauty in completion. The joy of accomplishing things, it doesn't matter if they're little or large, is energizing.

Just talking wears me out. And that used to be one of my favorite things. I hope this is just a phase. That's why I haven't said anything. Holding on to hope that it will get better. In the meantime, please forgive my lack of communication. I have so many posts that I need to write about, like the Oscar Party Fundraiser this Sunday, or the Hoedown Fundraiser on March 22nd the evening of the Run Ladies Run. I'm just tired, so tired, but my brain is angry, and it's taking prisoners. I feel like it might not be long before I'm swallowed whole. 

My sister-in-law Courtney is amazing. No Joke. She is spearheading all of these amazing events, and I am so grateful. I just did the math for some paperwork, and in 2013 just in newcastle disease virus shots and subsequent travel, I spent upwards of $78,500. I hadn't wanted to even look at the numbers, but I had to, and man was I shocked. I haven't added all the other costs of supplements, medications, medical bills, MRI's and radiology reports. It's all too ugly to obsess over. To even acknowledge. These days it's more important to figure out why I can't get my hand to work to unbutton my jeans to go potty. What changed?

Do these new changes effect my life? Clearly. Does it stop me? No. Does it slow me down? Of course. But I keep finding ways to smile. Here are some pictures from the past week.

Valentine Tulips From My Love

Pad Thai From Scratch For Danny: A Major Feat. Success!

Free Parts For The Chandelier I Want To Make

Thursday, February 20, 2014

RLR Medical Fundraiser

Who loves to run? This girl! I am deeply honored to share the news that there is a new fundraiser on Saturday, March 22nd in Friday Harbor that includes a 10k (6.2 mi) and half marathon (13.1 mi) run.

It falls just a couple of days after my immunotherapy shot in New York, but Dan promised he would take me up to the island so that I can run or walk my way through the race. I don't think I'm capable of completing a half marathon, but I'm all about the 10k. If I start to feel sick, or seizure-y, I'll chill out and bow out of the run for the sidelines. (But between you and me, I'm preeeeetty sure I'll be pounding the asphalt until the end.)

I know this note is a little last minute as far as training goes (that's my fault) but if you're around on the island and are interested, please come join us! If you're not a runner, maybe you'd enjoy walking it?

This race by Run Ladies Run is an annual event and this year they are sponsoring me. The proceeds from the race are all going to my medical fund to help me continue my life saving treatments. I am incredibly grateful, and like I said, very, very honored. I stole a picture of the event headmasters, the women who have passion in their sneakers, I hope they don't mind. Look at those beautiful faces! I can't wait to run in their footsteps.

If you are in the running spirit - or know someone who is - please click on the photo to register, or you can register HERE. For full race information, including maps and some bumping tunes (they have a great music selection on their website), click HERE.

And of course, if you could spread the word I would be very grateful. Especially since this is my only social media outlet. :)

Thank you. And I really hope to see you there! Lets make it a running par-tay.

That reminds me, this run is going to be a great celebration, and I'm going to dance my way past those miles because I called UCLA today and they concurred with UW that there is no new tumor growth. I am cleared for another four months. I now have until June to schedule my next MRI. Life is sooooo good. Let's keep this winning streak on track. Cheers to my friends and family and to immunotherapy shots and venom and metformin and hundreds of supplements and weird elixirs and natural whole foods and soft gingersnap cookies. Just kidding, had to throw that in there to see if you were listening.

Wednesday, February 19, 2014


Possibly in this very moment the good folks at UCLA on the tumor board are reviewing scans of my brain to determine if I'm stable. All I can do is hope that they have the same findings as UW. Ultimately, if they don't agree with UW, if they believe they see new tumor growth, it will be significant. I go to UW for the scans, but I don't get treated there. UCLA's opinion is what matters to me. They are the doctors that follow me, and make recommendations on treatment. So, I sit here crossing my fingers waiting for my decaf green tea to cool enough to sip. Yesterday, probably no doubt due to stress, I had a very small seizure. Seizures suck. I hadn't had one in months, so there goes my streak. It was a simple focal seizure, so it really wasn't a big deal. It's just a bummer. My simple focal seizures occur with an aura, which is basically a premonition of a seizure. I have a few seconds to prepare myself. I grab a lorazopam and place it under my tongue, then find a dark, cool, quiet place. My right arm then begins to tingle, the sensation growing up toward my face. Sometimes it reaches my head, always only effecting my right side. The  yesterday, though, the tingling hung around my right elbow, never spreading. Of all the options I was pretty stoked (no grand mal, no loss of consciousness)! A very benign seizure indeed. I've had a panic attack in the past, before I ever even had a seizure, and that panic attack was tenfold worse than my little focal blip. This guy lasted seconds, and if I was a good liar I would have tricked myself into believing it wasn't even a seizure. Damn years of self assessment.

Of course it's disappointing, but it really isn't as devastating as it used to be. I actually feel like it wasn't even a big deal. I made the decision last year to live my life fully, with a happy heart, not to dwell in the fear of seizures. Living in fear is useless. It's preemptive. In a bad way. It's an oxymoron, because if you're living in fear you aren't actually living at all.

So today, to get back on the horse, I went for a run. I did my interval training, two minutes of walking by two minutes of escalating sprints, finishing off with 6:30 min mile chunks. It was a quick workout, only 30 minutes of cardio, but it's something. And it made me feel alive. Those sprints, with drips of sweat rolling down my temples, are ethereal. They're powerful. And healing. They are encouraging, and emotional. They connect me to a place of deep gratitude. They humble me, and allow me to go on. In the big scheme of things, what is a little seizure blip? In my world, not much. Because I won't allow it to hold gravity. It's gone with all the other dead weight I've let go. It's freeing.

Instead of freaking out about the overexcited brain waves and short circuiting in my grey matter, in true Jess form (I like to think) I switched my focus to things I can do to alleviate the problem. I already live pretty well, but I battened the hatches as far as food goes, and immediately made an elixir to lower the inflammation in my body. Scientists have long documented that inflammation causes seizures and that seizures cause inflammation. (What a nasty cycle.) So, twice a day I've been drinking a quick shot, and you may think me crazy, but heck it seems to make my body feel fantastic. Here's the recipe:

1. Juice half a lemon (include the pulp, and a shred of peel for the lemonene - which has shown chemotherapeutic properties)

2. Mince a clove of garlic (as you see in the photos you can tell I was lazy today, should have chopped more finely, the tinier the better), a 1/2 inch of ginger root & 1/2 inch of turmeric root (leave it out for 10ish minutes to allow the alliicin in the garlic to form)

3. Shoot it! No need to chew, that's what all the mincing was for. I love just tossing it back, it's a real breath saver. Garlic breath isn't that bad when it's after dinner, but for breakfast? Gross.

Ginger and turmeric's properties are synergistic and compounded when eaten together. And I think we all know our stinky allium friend is a crazy cancer cell killer and immuno builder.

I'm all about maximizing nutrients, and with that said, although I love my local grocery store, I am very excited to start my first PNW greens garden. My new urban salad farm. (Thanks for the help Larry!) There are little seeds in there waiting to sprout. I've got two different types of kale, romaine lettuce, rainbow chard, and a variety of red lettuces. I can't wait!

I'm a busy girl, with all sorts of distractions. Instead of focusing on the manipulative little monster trying to nestle in my head, I'm dancing my way through life, only slowing when my brain forces me to. And it feels good. It's funny, seizures used to terrify me. I'm relieved to have put them in their place.

Saturday, February 15, 2014

Our Twelfth Ladies

I just walked past our desk to find the happy faces of our hyacinths peeking out. How fun! I had to lean waaaay in there for the scent (delicious), but as they continue to open it will just get better and better. Man, isn't life great?!

Friday, February 14, 2014

A Halal Kind of Life

Woke up to savage rain and violent gusts of wind this morning at 4:15 am. I was bummed that I was startled out of my dream, but excited to give Dan my Valentine card. I do love waking up with Dan on the odd days that my eyes shoot open like tulip buds at five in the morning. I get the house bumping with music while Dan shuffles his feet and I get the French press going pretty much like this (especially the "drum" solo):

It's a special talent. I'm an obnoxiously happy morning dancing cook. In fact, I'm pretty much an obnoxiously happy morning dancing anything. Some have implied a need to shorten solely to just obnoxious morning person, but I'd argue that I bring the party first thing. Best way to start the day. From the moment my eyes open I might as well have been awake for hours, it's instant.

I do love a good morning sleep, but those are much harder to come by. I've always been a morning person, possibly carried through by my nature as a light sleeper - and I never want to miss anything.

As for MRI results, I'm still waiting for UCLA's confirmation on the "no new growth". My scans didn't make it into last Wednesday's tumor board (it's a very busy place) so I have to wait for next Wednesday, the 19th. One of the hardest things about living with a disease like this is all of the waiting. It can tax even the most patient of saints (of which I am not). It's impossible to remove the fear, impossible to forget, but I have learned that deep breaths and surrender can keep me on track.

My life will never be as it was before, but I don't want to live in a state of  fearful toxicity. I remember a friend's sister sharing her Muslim beliefs about halal animal slaughter (random, I know, but bear with me). I won't go totally into it, but here's an excerpt, "Muslims are taught through the Qu'ran that all animals should be treated with respect and be well cared for. The goal is to slaughter the animal, limiting the amount of pain the animal will endure." Yes, they slit the neck and drain the blood, but everything happens very quickly. I respect the process; I like how it focuses on the least amount of suffering, and the avoidance of fear. Unrelated (although related - know what I mean?) I've read that standard slaughterhouse practices in our meat industry are pretty inhumane. I'd hate to be a cow going through the process. As an animal is engulfed with fear, stress hormones surge through the body. If that raging fear is preceding death, the body/meat will be marinated in stress hormones. I'm no genius, but that doesn't sound like a great plan. I have a weird motto that I want to eat happy creatures, things that have been living as near to their natural habitat, with their natural food sources. I feel like the positive energy, and happiness from the animals transfer to my body as I eat them. I don't want eat bruised, battered animals. That makes me sad and grosses me out. My point, to pull it all together, is that I want to live a halal kind of life. (Not necessarily blessed by Alah, although it couldn't hurt, might as well cover all the bases.) I don't want to live within the confines of a cage, without the freedom to roam. I want to be respected, and most of all, I want to be oblivious of when my time will come.

To Read More About Halal Butchering: The Halal Slaughter Controversy

Tuesday, February 4, 2014

MRI Results

As the neurotic tumor fighter that I am, I drove myself to UW this afternoon to get the radiology report from the medical records department, unable to wait the 1-2 weeks for the typical UCLA response.

First, a reminder that my two hospitals don't always agree, however, it looks like we have a green light from University of Washington Hospital.

To quote the final impression: "Stable postoperative changes within the resection cavity. No evidence of new abnormal enhancement or increasing surrounding FLAIR hyperintensity to suggest recurrent." BOOM. Done. YES! This report was using a comparison to the July MRI which is even better than comparing it to October.

What a relief! I have been so nervous. I wasn't even able to eat today. I will wait for final celebrations for when I hear from Dr Liau at UCLA to confirm, but man, I am very optimistic. If she, and the tumor board agree with UW then I'm good! All the the expense for my immunotherapy, the venom, the supplements, the diets, the exercise, the research, the sweat, the energy, the effort, it has all been worth it! Now, I just need to keep the ball rolling. I want to remain healthy! I'm already happy, so the gift of health is just more than I can dream. It is always my biggest goal, my ultimate hope, and the main thing I wish for, what I work toward. To celebrate, Dan and I are headed to the gym. As I sprint it out on the treadmill, I'll bet I'll be the only one with a huge goofy grin on my face, just teeth, smile wrinkles and sweat, that's all they'll see.

The only new growth I want to see is in my garden!

Saturday, February 1, 2014


I just sent my buddy this pic, telling her I was sending a face hug (more like a face laugh, though). The MRI is over, we mailed the disk to UCLA, so now we try to wind down and drink lots of water to flush out the contrast dye. Poor kidneys. 

The radiology technition, after the scan, asked me if I was undergoing chemo. That scares me. He doesn't compare old scans, he only looks at the current images. Does that mean he saw something? Ugh. I hope not. 

Time to rest. And gotta go wipe down Mr Lemon's leaves, I noticed they're a little dusty.
Related Posts Plugin for WordPress, Blogger...
Back to Top