Wednesday, March 26, 2014

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. 

Friday, March 21, 2014

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 - 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!

Monday, March 17, 2014

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.

DOG front and PAW-PRINT back of almost any breed custom baby bodysuit 

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!

Thursday, March 13, 2014

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:

Monday, March 10, 2014

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.

Sunday, March 2, 2014

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.

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