Pure Delight

I'm starting to grow out of my daze from all of the travel and excitement from the previous week. Since Monday night it has been like living with a perpetual hangover. Ironic since I don't drink.  

This past week has been so much fun! My head is still spinning - in the most happy way. To do the Manhattan thing with Dan, then jump over to Friday Harbor for the weekend for the race and barn thing was so much fun. I got to see so many friends, and met a bunch more. I was embraced, literally, hundreds of times. It was healing, and energizing, and all the laughter and rediculousness was pure and I loved it. Here's some pictures of our group for the race, we took a photo at each mile. 

Between the Run Ladies Run race and the community barn dance, we raised enough for half of a shot, which is GLORIOUS. Thank you!!

These treatments are crazy expensive, but I believe they are helping. Of course, I get nervous and scared that my tumor will grow again, I talk about it all the time, but I'm hopeful as well. Mostly just hopeful, and really, really happy to be here. 

Visiting with friends this past Saturday, I would listen to what they were saying, then my heart would interrupt, and she would swell, and I would mentally pinch myself, always surprised by how lucky I am to be alive, and how lucky I am to be so deeply loved.

My treatments will take another 2.5-3 years to complete, and I probably sound nuts, but who knows, maybe these crazy things will work! Maybe some day Dan and I will have bigger more fun things to focus on than treatments, like buying a home, or starting a family, or maybe backpacking through Europe to visit my Polish family. It's weird to live this life, to in many ways postpone almost everything, stuck on a hamster wheel of faith that I will remain healthy at the expense of changing nothing so that we can endure treatment after treatment. Our lives are complicated, more than we can ever truly explain, but that's the life we were given, and I think we're living it well. 

I'm happy to indulge in my venom eight times a day, and do all the supplements, and the NVD shots, and yet, I will be excited when I have more freedom to not be tethered to a refrigerator or cooler (venom must always be refrigerated), or to not have the expense of the treatments, the luxury of spending our money on things other than tumor stuff. Aaaah, that sounds fun! Just the thought of being able to save money sounds heavenly. To have assets. The security in that could make me cry in delight. The odd things we wish for.

Although I'm touching on it now, I can't spend much time on dreaming big dreams or making life goals because the excitement, coupled with the thought of waiting, and waiting, and waiting, and waiting, then the possibility (or according to doctors - probability) of the tumor growing back (which of course would crush everything) could quite literally squeeze all my light, all of the hope, out of my soul. Instead, I watch the seeds sprout in my garden, each leaf from the plants unfold, the petals of the hidden flowers unfurl. I celebrate the little things because I don't have the luxury of making big life goals, only because I don't want to be disappointed and that's okay. I accept that. Life is not on my schedule. Instead, life makes demands of me, tells me the rules, and my job is to listen and adjust. 

Join Us At Brickworks

Dan and I made it back home from NYC late last night. It was a whirlwind of dinners with friends (Steph, John & Octavia and Nate, Miriam & baby bump). We toured ground zero, then ran around the greenway, waving at Miss Liberty, hit the High Line, zoomed through Time Square, wandered down 5th Ave, jogged Central Park, stopping through Grand Central Station, we sweated all over the city - it was a dream trip. You can cover so much ground by running. Somewhere in the controlled chaos was the NDV shot, but for the first time it wasn't the center, not the focus, of the trip. I felt free, and confident, laughing with Dan as beads of sweat rolled down our temples and we dodged the madness that is Manhattan. The dinners we spent with friends were intoxicating. To be alive, and free, and capable, and curious, and happy, and strong, makes my soul dance and warms my spirit until I can't help but smile, to the point where I have to veil my teeth because they're cold. It's a powerful feeling.

(John, Steph, Octavia, me & Dan)

(Miriam, baby bump, Nate, me & Dan)

(tiny Statue of Liberty beside my head)

(Freedom Tower)

(Rockefeller Center)

(Found a statue in Central Park commemorating a Polish king - hi Polish family!!)

(Grand Central Station)

Today, we head to Friday Harbor for the Run Ladies Run race that takes place in the morning. I'd been planning on walking the 10k with a group of girl friends, and I'm sure I still will, but my legs are intching, almost trembling with excitement, with the idea of a run. It is so hard to force myself to walk when my quads love the burn.

If you're in Friday Harbor tomorrow night, please stop by Brickworks for the Barn Dance between 5-10 and say hello. You don't have to donate any money to get in, and we love kids, so please bring the whole family. I'm really excited to get to hug people and say hello. There will be pizza by the slice thanks to Daniel at Van Go's. He have us a screaming deal so that we can make a little profit to benefit my medical fund. But please don't feel like you have to eat, or spend any money, just come to say hello and laugh and visit with friends. 

I borrowed this photo of Daniel at Van Go's from www.sanjuanupdate.com - I hope Tim doesn't mind. The island news sources have been incredibly kind in getting the word out. Hope to see your smiling faces!

Dan's NYC Adventure

Good Morning! Busy week ahead, and my mind is already happily spinning. I've been buzzing around the house doing final laundry so that Dan and I have all the clothes available to pack. Yep, you read correctly, Dan's joining me in New York for my immunotherapy shot. We fly out in the morning. It's his first trip to meet my doctor, his first trip to New York, and I am giddy. We have always kept Dan home, working, to off-set the cost of travel, and the treatments, but it turns out Dan's job actually wanted him to take it off. The best part is that it was only $350 to include him! What a cheap date (as far as travel goes). We have dinners planned with friends, and hope to check out ground zero and are packing running shoes to explore Central Park. It's going to be unforgettable. I'm hoping this can be a way to celebrate our anniversaries that we forgot in 2013. We're often so caught up with work, MRI's, treatments, supplements, venom applications, and the daily grind of paperwork, bills, laundry, groceries, cooking, etc. that we forget big moments, big celebrations. You know how it is - we all get busy. We do a great job of celebrating, and laughing, and loving each other daily, but sometimes it's nice to enjoy big moments like our first date (the most romantic day of my life), or when Dan and I shared our vows underneath the Eiffel Tower, diagnosis day, or when we signed our marriage certificate. We certainly have a lot of monumental dates, days that forever changed our lives, and I think this trip will be a great reminder of those moments and the deep love that we share.

On another note, have you happened to notice the cute grey hat in the upper right hand corner? It is made by our friend Rachel, and all of the proceeds go to my medical account. It comes in other colors, and more than the amazing hat that she designed in my honor, you have got to check out her amazing Etsy store, That's Sew Yarn Cute. It has the most adorable handmade children's items, it makes me want to dress our cat. No Joke. Here's a couple of my favorites...aren't they cute?! You can click on her company name, or the grey hat in the upper right hand corner to visit her website. Or you can just click HERE.

 

When Dan and I get home from New York, we'll be heading out for Friday Harbor for the Run Ladies Run fundraising race. That night there will be an island dance with free entry. There will be food and drinks available by donation at Brickworks. Everyone is invited! It's for all ages. There is no fee to get in, so please stop by from 5:00-9:00 pm Saturday. Come for a hello or a hug, or just to mingle with friends. It's a fundraiser, but more than that it's just a great way for Dan and I to thank everyone for the ongoing support. We feel very fortunate, very loved, and can't wait to say thank you in person.

I''ll write more information later in the week. Hope to see you!

Dark Clouds Don't Dance

Why are we so mean to ourselves? Especially women. I know I'm not the only one who does it. I have a little voice in my head that is really negative. I don't know why he's such a jerk, or why he seems to be male, but I don't like it. I know Dan would tell him to buzz off, why can't I? He pipes up when I look down at my thighs, when I pass my reflection. He always pipes up about what I eat, how much I eat, my activities, my life. He's really getting on my nerves. Why do we allow that, those mean voices in our minds? To a certain extent, I guess it can be a good thing because it can encourage change, but that's only if you're motivated by punishment and fear. It gets worse when I research, when I find myself falling through the vortex of the tumor world. I watch the amazing lifestyles that some lead, full of perfect calorically restricted ketogenic diets, hundreds of pills a day, tonics, meditation, exercise, rest, these people are amazing - not cheating, just pure dedication. Some have gone well over a year without a single cheat. I read and I'm inspired, and yet reading about their journeys make me feel like I'm a lazy slouch, that I'm not trying hard enough, that I'm failing, that I'm killing myself because I'm not making smart enough decisions, like the green apple I had for breakfast this morning. In the restricted cancer diet, eating a green apple might as well be a cookie. It's sugar. I know, because I've tried so very hard, that I am not cable of being completely regimented. It makes me feel crazy, and trapped, and snuffs my little light of happiness and hope. I want to live a long healthy life, but I also want to enjoy myself. But, because I've researched the crap out of cancer diets, I also know too much to be ignorant so I end up never feeling happy with my choices. If I'm too strict, I'm miserable. If I'm too lax, I feel guilty. The little guy in my head is mocking me. Jerk. I'm doing exactly what he wants me to do: feel crazy.

So what do I do? Do I quit researching, quit reading up on new treatments, new information? I wish I had the type of constitution that could just slough stuff off. I'm working on it, but man is it hard. Clearly I need to force myself back into yoga and meditation. But I'm so bad at it. Both always feel great at the time, but I don't crave them, instead they feel kind of like a chore. I feel bad even saying that, but it's how I feel. I guess I have to just keep up the running. I feel like that a-hole in my mind that loves to tear me down is not a runner. He hibernates. He hates it. What a lazy SOB. See, look how you guys just helped me work that out? We just found his Achilles heel. Ha! I think we all have a nasty worm that infiltrates our thoughts. The trick is to outsmart him.

It's stressful living with the MRI's and weight of having a tumor, never knowing if you're doing enough. I don't want to get a bad scan because at that time it will be too late to backtrack and be more strict. Ugh. The world of brain tumors. Never knowing if you can beat it, never knowing the perfect combo, if those consistent apples will be enough to feed the tumor to kill me. Who would have thought this could be so hard. So detailed. So complicated.

As for the melanomic whatever that is growing on my breast (and the other mole), I have the OR scheduled for April 3rd. My reconstructive surgeon is pretty cool too, so that is a huge relief. It will be nice to get those areas removed. It's a heavy weight watching them grow. Of course, just as I unload my fears, my stresses on this blog, I am still chair dancing as I type. I've just remembered that when you dance, even if it's just with your shoulders, you can't have a dark cloud. It's impossible. Note to self: dance more.

A few things that made me smile today:

Cauterization & Kryptonite

Good morning world. Life has been busy, spent the last weekend in Wenatchee with family, holding a garage sale and as we're back home it's hitting me that it's already time for another immunotherapy shot. How did three months go by so quickly?

While we were gone Lemolo had his first bloom. It smells delicious, reminiscent of gardenias. Not the stinky synthetic cheap kind, but the most heavenly natural scent. Delightful.

Before we left for Wenatchee I checked my little salad garden and behold, I have sprouts!! I had been watching, and waiting, even sticking my fingers into the soil on occasion to make sure the seeds weren't planted too deep or to make sure they were keeping nice and damp. The latter, not too hard to do here in Seattle, of course.

With my excitement from the growing plants, we headed out for our weekend. We'd loaded extra stuff for the garage sale into Dan's car, the old 1982 Land Cruiser and went on our way. It was sunny, and gorgeous. We laughed as we made it up Steven's pass, enjoying waterfall after waterfall along the highway as cars zoomed by. Our old goat is a slow girl. We hit the crest with a glance over at the spotty skiers meandering down the hill. As the nose of our old goat faced east, Dan leaned over and tickled my belly, and told me, "See, I told you she could do it!" But as things go, it was only a few miles before old goaty pooped out. We were driving down the two lane highway when the engine stopped running. I can not stress enough how grateful we were to find, within only 200 yards, a pullout. The mountains have been dumping snow off and on so there was snow plowed along all sides of the roads with not many places for reprieve. As we were on the windy road we were lucky to not have been stranded on a blind corner.

We pulled over and tossed on some extra layers of clothes; the temperature was dropping quickly as the sun set.

Nope, that's not Seattle sunshine, it's the moon.

We attempted to fiddle in the engine, testing wires, and tubes, and parts for about 45 minutes to an hour. Then, we gave up and called my parents for help. My poor parents, their job is never done. By the time they got there it was pitch black and I was pretty damn cold, with my father's truck registering 31 degrees. We left the old goat by the side of the road and headed home, happy to be thawing.

The most amazing part of the whole experience was that Dan and I never got upset. We were cracking jokes, and as Dan tried to troubleshoot I jumped up and down to stay warm. It was just another adventure. When we were nestled warmly in my dad's truck we all visited, and laughed. I love it when even in tough times, people can keep their heads on straight and have a little fun. The next day the old goat was retrieved, and she is resting in my parent's warehouse. My uncle Michael came over and the men bumped heads to figure out the problem. The conclusion: fuel filter. Between the goat adventure, and the garage sale, visiting my sweet grandma a few times, and a family dinner with our uncle Dave and his new wife Berrit, it was a fantastic, and eventful weekend.

I have a day to rest, then I have an appointment with a reconstructive surgeon tomorrow morning. It's a preliminary appointment for my old mole issue that never seems to end. I have already had to go in for surgery to remove moles all over my chest, and I've also already had to have them go in deeper. Way deeper. Twelve stitches deeper. And this time I have two more deep areas they want to remove. One is on my areola (gross, I know, but we all have them). What are they going to do, remove my nipple, scoop out what they want to scoop out, then sow my nipple back on? Excellent. As for the other area, it's on my other breast. I love my breasts. They're mine, they're feminine, and they're disappearing fast. Three chunks in two years? Jeez. Ugh. Last time they removed a chunk from my chest I started having an aura that was headed into a seizure so we had to stop the surgery for a period of time. It was a mess, and nauseatingly traumatic. No one wants to feel cauterization, or tugging during a procedure. Gross.

As for my mind and my arm, and the cognitive issues and right side weakness, I don't know what's going on. It could be just my kryptonite (lack of sleep), or seizure activity, or the fact that my brain waxes and wanes due to all the instruments, fingers, scalpels, saws, drills, etc. that have nestled around in there. I keep hoping I'll get back to normal, that my brain will heal completely, but the truth is that there are varying degrees of damage after brain surgeries, and I've never met anyone who has come back after a brain surgery and said they are exactly the same. It might be just a hairline change, but it's a change nonetheless. For me, not being able to understand things at times (which by the way is a strong bonding point with my grandma at the nursing home - a silver lining) makes me a little sad. I don't dwell on it, but I wish it wasn't so. I'm only 33 years old. I keep hoping that I will one day wake up and notice that I'm me again. A non-confused me, with an arm and hand that will do whatever I want whenever I want - and to be seizure free. In the meantime, I plug along trying to ignore the oddities, trying to push enough to challenge my body, and my mind, so that they grow, and heal, yet recognize when to pull back and allow for rest. The challenges come daily, there is never a dull moment in the O'Carroll household (that's what we call ourselves). Please wish me luck at the consultation tomorrow; the whole thing scares me.

Oscar Island

How is it that it's 7:03 pm and I can barely keep my eyes open. So tired. It's Oscar night and there is the most amazing fundraiser going on in my hometown. I'm logged into my sister-in-law's Facebook account (since I don't have one of my own anymore) so that I can keep up with the live photo uploads. It's so fun!

The fundraiser is all about the Oscars, named Red Carpet Oscar Party and Fundraiser for Jessica Oldwyn. Watching all of the photos on the site, the smiles, the sparkles, the outfits, the swag, the decorations, the laughter I can feel in their faces, it's very special. I am one of the lucky people that grew up in Friday Harbor, quite possibly the most picturesque place in the world, and as I watch this amazing fundraiser unfold I feel like I'm living a Nicholas Sparks novel. Actually, it's more than that, I feel like I'm living a romantic comedy, an epic drama, and a documentary.

When you grow up on a uniquely isolated island, your friends become brothers and sisters. Your parents friends become aunts and uncles. Your teachers, bus drivers, your coaches, your sheriff, your bosses, the guy who parks you in line for the ferry boat, the people who take your ticket at the movie theater, the paramedics, everyone - absolutely everyone - help raise you. They raise you as role models, as patient ambassadors, and peers. It's the most beautiful family I could ever imagine. So many loving souls.

I'm I afraid I can't keep writing everything I want to say because my brain is throbbing, but I'm going to include the note I wrote for Courtney (my sister-in-law who worked tirelessly to put it together) to share at the event tonight.  

I am snuggled in a faux fur blanket on the couch with a pad of paper and my favorite purple fine tip pen. I keep trying to put the feelings in my heart onto the page, but I can't put it into words. Not well anyway. My heart is literally swelling from the kindness you guys are demonstrating toward me. It's overwhelming, and embarrassing, but only in the most outrageously magnificent way. The fact that you're a part of the Oscar night, this night to help me continue my battle to live life, is huge. What you all are doing for me is huge. Of course I never knew I would have to fight this battle. I never expected, as I trolled False Bay for beach glass as a child, or the years showing pigs at San Juan County Fair, or the summers working out at Roche Harbor giggling with friends, that I would be forced into such a struggle, especially at my young age. But here I am. And one thing that I have never felt, from the absolute beginning, was solitude. My island raised me, and my island heals me. You have continuously helped heal my soul; You have continuously helped heal my heart; You have continuously helped heal my mind. You have engulfed me with love my whole life and as I fight, you close ranks, you circle wagons and protect me as much as you can and I am so very grateful. I am determined, and I am a warrior, but I am also fragile, and I know I can not do it all. Thank you for helping me. Thank you for your support. This is the most exhausting journey I've ever experienced, but I believe my life is worth the fight. I want to live. 

I wish I could give hugs to thank all of you for coming, for your love, for effort, your generosity, and for your friendship. Thank you for caring about me, I feel very, very loved.

Here's a photo from our house in Greenlake:

Although I couldn't attend, I donned my great, great aunt's dress to join in the spirit. Although it's an hour and a half north and an hour long ferry ride (if you're lucky) to get to my beloved island, my heart's connection never waned. Like the love for my mother, or my father, who gave me life, San Juan Island grew her vines through my veins like little wild blackberries bearing fruitful memories. I am who I am because of our island.

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

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.

Ethereal

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.

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?!

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

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!

Chemo?

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.

The Life He Deserves

There's been a lot of snuggling in our little cottage tonight...

The brain scan is scheduled for 7:30 am tomorrow morning. I should have a copy of the scan by 9:30 am or 10:00 am. A final readout should be available on Monday, Tuesday at the latest. 

Am I scared? Yep. Always. It's unnerving and surreal to have a mass growing in your brain. I'm starting to become an expert in a process I have no desire to be fluent. 

If I have a bad scan, we have back up plans. They aren't definitive, it has to do more with further genetic testing, but it's a start. The biggest disappointment, if they show tumor growth, will be the doubt it will create in my mind. It would, inevitably, effect my confidence and psyche. I haven't felt this good since before I was diagnosed. I'm gently driving again, and have been free of auras and seizures (knock on wood) for just shy of a year. I have more energy, and I'm all around happier. I've found a groove. 

I hope, I dream, I pray that my tumor has not grown and that I will have four more months of freedom. 

Tonight, Dan picked a funny movie to distract ourselves. Tired from a long day, I scooted over and leaned my head onto his lap. I rolled to face him, and he looked into my eyes. We sat there ignoring the movie for a few moments. I don't know what he was thinking as he stroked the hair from my face, but I was thinking about how sorry I am that he has to deal with this type of stressful life. This roller coaster of living scan to scan, never knowing if things will be okay, or if they're about to get worse. There are many stresses in cancer, and I wish I could shelter him. I just love him so very much. I wish I could give him the life he deserves. And hopefully, someday, I will.

Don't Fear The Lemons

I've been resting, and trying to crazily distract myself from the MRI on Saturday at the same time. I am a living contradiction. How human of me.

I feel calmer than normal about this MRI. I'm not feeling more confident, I just feel like I don't know what life is going to bring me. My fate. So many people have come before me, fighting cancers and illnesses, and sometimes they win, and sometimes they don't. Sometimes the people who survive aren't the ones you'd expect. I can work as diligently as possible, exhausting as many treatments as I can afford, and that is literally all I can do. And you know what, I may find that nothing will stop this monster in my brain. Or, randomly, one of these scans we will realize that he has not been growing and that all of my very hard work has been panning out.

In the meantime, I have been having so much fun. Not like I've been out doing crazy activities, but I have been really enjoying each moment. I've been driving more; I've expanded my radius to approximately 5 miles from our home. I feel free, and happy, and calm when I drive. I don't talk on my phone, or check text messages. I keep the radio on low, the vents are on low. I avoid high traffic times of the day, and I use back roads. If the posted speed limit is 35 mph, I'm plugging along at 30-33 mph. That reminds me, next time there's a slowpoke in front of you, please think of people like me. I pull over when there's someone behind me, because I'm cognizant of what it's like to be stuck behind a Sunday driver, but there are those that are scared, and just need to keep moving forward. Ignore me if I sound preachy, I was just trying to provide a different inner monologue for your next trip stuck behind a slug.

Today, I drove myself to the gym then headed all the way to Sky Nursery. I have been wanting a citrus plant for a few years, but I didn't want to spend the money. Since Dan worked so hard last weekend, clocking a good 24 hours, he said I could treat myself. Isn't he sweet?! So, he's still at work, but I can't wait to introduce him to our newest addition.....

I've been joking with a couple of friends, sending photos of our new family member, that when life gives you lemons, go out and grow your own because clearly, you are meant to have lemons. I'm not afraid lemons, or the connotation. I don't invite negativity or hardships, but I've learned that things are only as powerful as I allow them to be. And each time I look at this little guy, it makes me feel accomplished, proud of myself; I feel fearless, and grateful. It reminds me of all of the hard work I've done, the times when I had no hair, when I had trouble walking, and running, and speaking, and reading. Lemons are nothing to fear because I am resilient. I don't know what my role on this Earth is. I don't know if I'll be able to stop Hermie from growing. I don't know what happens when people die. Clearly, I don't know much about a lot of things, but one thing that I do know is that I am eternally happy with my life. And I'm grateful for the joys of this world.

It's Deep, Not Dark

Operation MRI distraction is exhausting! 

This morning I drove to the gym only to get bored within 30 minutes of my interval run. I headed home, and since the fog had melted into sunshine, I snagged a hat and decided to detail my car. Halfway into it I stopped for pills and venom, then continued through the final hour and a half. 

When Rosemary was gleaming like new, I grabbed my garden tools, stretched on my pink garden gloves, and got to weeding. I transplanted, I trimmed, I started digging a hole to China, which made me wonder, do they say they're digging to America? As I'm sure you guessed, I'm not actually digging to China, just trying to transplant a massive dinosaur plant. With Dan working 12 hours today, and tomorrow, I have to be my own muscle maker. 

What makes me nervous is how sore I am, and it isn't even the 'next day' yet. People are always obsessed with the next day pain, but there's something about immediate pain too. That immediate stuff shouldn't be discounted.

When the sun was setting and Emma and my digits were numb, we moved back inside to clean. Then, of course, as with the episode of exercise, I lost interest and settled into the couch for a Netflix streaming movie. Somehow a documentary on the afterlife drew me in. Probably because I can't get away with death subjects with Dan. I'm curious about the concept of an afterlife, of religions, and theories; I don't find it macabre or dark, just fascinating. Not true for Dan, and I respect him, so I tend to watch those things on my own.

The documentary was pretty fluffy, I was hoping for a wider spectrum of voices and experiences, but oh well. 

I'll leave you with a photo of my first hydrangea bud of the season, a happy surprise, and a great quote I read the other day:

"The most common way people give up their power is by thinking they don't have any."

- Alice Walker

Dog Day

Life is more fun with a copilot. Friends are laughing right now because I used to hate having Emma in the car. I didn't want the dog smell. Still don't actually. But, as I calm down, and just go with the flow, I end up enjoying life more. Today I took Emma with me to use a credit at Swanson's Nursery, then I took her to the dog park to sniff some bums (her favorite pastime).

 

We walked down to Golden Gardens because I was craving the feeling of sand beneath my feet.

Afterward we grabbed an herbal tea and a dog bone. We were rewarding ourselves for our accomplishments. Her for a dozen tennis ball retrievals, and me for my longest drive in the past 2.5 years.

This is day three of Operation MRI Distraction. I have it scheduled for February 1st at 7:30 am. Since the scheduling I have given myself a task each day. It started with driving myself to the gym for an hour long cardio session and time in the sauna. The next day I used a gift certificate for a mani/pedi buff. Today was a dog day, pushing myself to get Emma to meet new friends.

Thank you for all of the kind comments on the blog lately. I think you guys are all crazy. I'm just a middle aged curmudgeon. I don't see what you see. I'm off to do my venom. Hope you all are getting to enjoy the beautiful sunshine. It is marvelous!

The Real Story

Ha. I did it! I'm posting, and it's a Friday. Boom.

Since the beginning of the blog a few people have encouraged me to turn my story into a book. Many have recommended just pulling together some of my blog posts, probably just because it would be an easy solution, and I appreciate that. The problem is that from the moment of that first headache, I have edited my story. Big key pieces. Major details. A few friends, and of course family, know bits of the truth, but only Danny and I know everything. Of course, as I have lived deeper and deeper into this diagnosis, I have lessened my editing, but there are (what I believe to be) significant details that people need to know in order to truly understand our lives, and this journey.

I started writing my story last year, and remained with only a page and a half until recently. It has been hard to feel motivated. The whole concept was overwhelming, in fact it was emotionally draining. The catalyst, my inspiration, was my new desk. My grandma is now living in a physical rehab facility, she can no longer live alone, so I became a proud owner of a really cool roll top desk. Somehow, with all the little compartments, and drawers, and the neat way it closes to hide all my junk, I get excited to write. I even came up with the perfect plan, and it has been working. I'm writing a page each day, M-F.

The thing that people don't realize, can't comprehend (not their fault), is that this story - although I've been writing it for years - is my life. Fingers have been in my brain. Literally. A few times. It's emotional. It's shocking, and almost unbelievable. The tricky part is that you guys don't know the whole story, the truth of what all happened. When I read the first four pages the other night to Dan, I slowly spun around in my chair to see what he thought. It was dark, and all I could see was the silhouette of his head. I stared at him, confused as to why he wasn't speaking, but when I moved closer I realized he was crying. Not a sob cry, but tears streaming down his face cry. He loved what I wrote, but it was still hard for him to hear. Hard for him to relive. Painful to go back to that place. This is real, and it was big. And to relive it each day by writing it out will be taxing. For a hot minute I thought writing it all out would be therapeutic, but quickly I realized that was stupid. I don't need to go back to that time to work anything out, or process things any further. Regurgitating all of the memories, and feelings, are necessary to write the book, but not necessary in life.

The undertaking of writing this book, of putting it all in a concise story, piecing it together, is very, very tough. My goal is to finish a rough draft by the time I hit 35, which is in a year and a half.

It has been incredibly helpful to do this blog, to document, and share, but there is so much more to tell. And finally, I'm ready to lay it all out there.

My new writing nook:

And when I'm done with the intended makeover it will look somewhat like this:

Resolute This...or That

You know what I love about this time of year? The obsession with getting healthy. It's all over the media right now, and it's really fun to learn the tricks (or scoff at the laughable ones). I wish we saw on TV, year-round, nothing but healthy stories; it's very inspirational. I'm not one for new year resolutions, I mean come on, I can't even seem to do a post each Friday, that lasted about a week.

Laying in bed last night, I thought to myself, smiling, "Life is hilarious, and I am a goober." It all started in the morning with me trying to copy the TV with some floor exercises using a broom handle. It was absurd; I was ridiculous. I had so much fun, though, and my butt hurts like crazy. So that's a great sign. I don't know if you've heard this (or noticed it yourself), but our bodies are not perfectly symmetrical. Some, less so than others. I remember in college, for the first time, I looked in the mirror over my shoulder while I was wearing a bathing suit. I had wanted to see what my butt looked like (big mistake). To my horror, I realized that I had a saddlebag under my left butt cheek, but my right side did not. Major disappointment. That led me to analyze my whole body, and sure enough, my left breast (gross, I know, but necessary for the argument) is, to the naked eye, bigger, and my left foot is a half shoe size bigger. Happily, my hands seem to be the same size, along with my eyeballs and ears (huge relief). Anyway, how did I even get on this tangent? Maybe the floor exercises? Must have been. Although I love to run, I've never been into isometrics, or floor routines. They bore me. But, in the spirit of diversion, I've decided to start targeting my lone saddlebag. I'm eating healthy, and I feel great. Since I don't really want to focus too much on the actual tumor (other than the current treatments, and supplements I'm already doing), I figure I'll focus my energy on getting into the best shape of my life.

Some experts say that diet is 80% of health, and, to my chagrin, I agree. When I'm eating clean I've noticed that I can not keep fat on my body, it completely melts away - even without a smidgen of exercise. Both Dan and I have been floored by how simple it is. Even crazier is that I eat a lot of fatty foods. I eat avocado every day, a tablespoon of fish oil, handfuls of nuts, and saute all of our meats in copious amounts of coconut oil. I don't have to eat like a bunny to be healthy, which has been such a change from life before diagnosis. Once you know how to truly eat clean, the only hard part is motivation, and if you have a partner in crime, or just take it one day at a time, almost like an addiction problem, you realize it's actually doable.

If you've caught past blog posts, you'll know that I've had a real yo-yo of weight. In early high school I remember weighing 161 (too many bean and cheese burritos), finishing at around 148 my senior year. Then, in college I weighed around 138 (thanks to lots of coffee, cigarettes, and obsessively counting calories). In 2006 I hit my heaviest point at 181 (emotional eating...baaaad news). I now weigh 138. I may fluctuate a little on a week-to-week basis, but ever since I removed junk and processed foods, even healthy processed stuff like Dave's bread, grains, legumes, and such, my life completely changed - my skin is better, my energy is better (relatively speaking), and my mood is better. Now, as an aside, I have to say that I will have a week or two even, from time to time, when I eat lots of crap (think holidays), but as a good little lamb I always find my way back to the herd of the healthy. I had to throw that out there so that you know that I'm human, and normal, not a robot with superhuman willpower.

There are all kinds of diets being toted right now since the #1 NY resolution is to get healthy or lose weight. There are so many ways to get healthy, thousands of diets, of lifestyles, and I respect anyone who is trying to better themself. I don't even really care how they do it. I won't judge. I just know what works for me. It's a no fail, huge result, lifestyle. Even if you cut out all the crap for one day a week and only eat veggies, lean meats, nuts, fruits, healthy fats, spices, etc., your body will thank you.

All this sass in me today is from, literally, the best smoothie I have ever eaten in my life. And I am telling you I have made some deee-sgusting concoctions. I promise you I had one hell of a learning curve (poor Danny), so I don't feel that bad about tooting my own bike bell when I do something right.

Here some of the exciting things about this drink: it's low glycemic, high in fiber, has all 18 essential amino acids, increases HDL cholesterol (the good one that regulates triglycerides), it's loaded with glutathione (the most powerful antioxidant), filled with caroteniods (helps eyes & reproductive health), has omega-3 fats (helps the body absorb the nutrients & vitamins), lowers inflammation (due to the ginger root, turmeric & lemon), and so much more! In fact, it's such a badass smoothie that I can't even begin to list all the amazingness.

Ingredients

Turmeric Root

Finished Product. Get your spoon, it's thick.

Ingredients:
2 leaves of kale (destemmed)
1/2 avocado 
5 sprigs of flat leafed parsley
1 lemon, juiced
1 inch ginger root
1/2 inch turmeric root
8 oz coconut water (or you can do regular filtered water if you'd prefer) - add extra for thinning if preferred

If you click on the highlighted ingredients, you can read about the unique vitamins and nutrients of each one.

As for diets, and foods, all I know for sure is that if there are ingredients in our foods that we don't understand, or recognize, or cannot pronounce, our bodies don't want them. Chalk it up to one more of my simple rules about life. The more I think about things, the more simple life turns out to be. I hope that doesn't sound know-it -all-y, because it definitely isn't how I mean it. I guess I just end up being surprised sometimes by how much more simple life can be when I honestly analyze things. When I don't lie to myself. Does that make sense? Like the old adage says, calories in calories out. Sure that makes sense, right?, and it seems kind of awesome (here comes two Oreos for breakfast). It basically implies that I can eat whatever I want as long as I burn it off. The problem is that it just isn't that simple. Calories are not equal, even though that's how I used to view food. When I stopped lying to myself and started excepting the basic fact that whole foods react different in our bodies than synthetic, processed foods, my whole life, and body changed. Now, this is just an observation within my own life, and I'm not trying to soapbox you, I just figured I share my experience in honor of all the health stories being tossed out there. So however you do it, whatever decision you make, good luck and cheers to you in getting healthier!

Wishful Thinking

I haven't had the energy to write an in depth post for awhile. I'm not sure if it's the fact that I've been bone tired from the holidays and stress of travel with the added craziness of my Grandma's accident, or perhaps it's correlated with the treatments I'm doing. Unfortunately, I've been noticing an increasing amount of weakness on my right side, along with increased numbness, also more vertigo and dizziness. And I don't mean a little bit. I like to think that it's the effect of my pills, serums, and such, attacking those pesty lingering tumor cells. We will know for sure in the beginning of February. We can only schedule an MRI 30 days in advance due to insurance policy. We're planning for February 8th, a Saturday. We've gotten in the habit of doing the scans on the weekend so that Dan doesn't have to take any time off. This MRI will also be the first one with my new health insurance. I have no idea how much of it will be covered, which of course is another new cause of stress. Typically, my MRI bill is around $5500 (each). There's nothing I can do about it, though, so I have to get the scan and if it isn't covered I'll just quote Steve Carell.

Am I scared with the changes in my body? Sure. You bet. But what can I do? All I can do in times like these is keep chugging along, take things one step at a time. Live day by day. My life might be unique to the general population, but it's not unique in the cancer world, and certainly not the brain tumor world. Sometimes that fact alone gives me inspiration. There are so many fighters out there, and even with the fear of another tumor, I know that I want to enjoy my life, each moment. My new favorite thing has been cooking. It's always healthy foods, brain tumor fighting stuff, lots of veggies, lean meats, and lots of healthy fats (think avocados). There's something about exercising, too. It brings me closest to my version of heaven, engulfing me in an elated bubble. Takes me to a world where I can conquer anything, least of all a silly brain tumor. Exercise equates life for me. Our bodies are meant to move, to stretch, to sweat.

My one wish is that I wasn't so tired all the time. My biggest regret in life is the fact that I don't have enough energy. I struggle, deeply, with daily tasks. Even without pushing myself I get exhausted by the most minimal activities. Maybe that's why I adore exercise. It makes me feel alive, and the physical exertion followed by the soreness makes sense. It's one thing that I can count on. It's logical, when so much of my life doesn't seem to add up. I don't know why people get the battles they do. I don't know why some have harder challenges. I don't know the meaning of life. I don't know my purpose. I don't know why some tumors grow and others don't. I don't know much, in fact. I know that I am beloved by Dan, and I deeply love him in return. I know that I have several close friends who truly understand, to their best ability, what I'm going through and they are unimaginably gracious to me. I know that I laugh every day. I know that I love every day. Sometimes life can seem so complicated, but when you break it down, it turns out, it's actually pretty simple.

Sorry I didn't do my Friday post, I've been bone tired. In fact, I'm headed for a nap. Good thing Bingie is assisting Dan at organizing his tool box. I can rest easy.