Huge Tumor News

You guys there are some seriously exciting new vaccines and drugs targeting IDH mutations. I have to thank our buddy Stephen (Astrocytoma Options) for keeping his fingers on the pulse of cutting edge treatments. This means great things for us in the cancer/tumor world. Our job is to keep hanging on until effective treatments become available. I mean get real, radiation and chemo aren't cutting it. So that's it. We just have to hold out and stay healthy long enough for research, and technology, and the government to allow treatments that will heal us. And it looks like we've got a few on the horizon that may do the trick.

The link below is referencing blood cancers, but that's okay, if it does work on IDH2 mutations, that means (I believe) that it would be effective for all cancers with the mutation (more or less, anyway - I'm sure some of the mechanisms are different). Meaning you could use the drug for other cancers (ie: gliomas) as an off-label treatment.
Phase 1 Data Demonstrating Clinical Activity of AG-221, First-in-Class Inhibitor of IDH2 Mutations, in Patients with Advanced Blood Cancers

Now this link is the most exciting for me as an IDH1 mutant glioma fighter. Word on the street is that Duke is working on a similar vaccine. It is literally a race for a possible cure. I hear that they're headed into phase II clinical trail very soon. YES!!!! So exciting. Here is a direct quote from the release, "Vaccination of humanized A2.DR1 transgenic mice bearing syngeneic IDH1R132H-mutated tumors resulted in a mutation-specific antitumor immune response and control of established tumors, which were infiltrated by IDH1R132H-specific T cells." (click for full abstract). So it looks like the vaccination was specifically targeting the IDH1 mutation and caused an anti-tumor response which I'm not sure if it caused a shrinkage of the tumor itself, but at minimum it looks like it stopped tumor growth. How fantastic is that!?! It's what we consider a miracle in our household! Now, of course, they start with mouse models, and we need to make sure that this vaccine is effective in humans with established tumors (as opposed to grafted/implanted tumors). Oh man, but to be getting this close to real treatments, real options, is absolutely thrilling. When I got those emails from Stephen, my eyes started watering, and my soul became weightless. It's just fantastic.

If you guys haven't had the chance to check out Astrocytoma Options, please take the time to check it out. It is the best wealth of knowledge, and research, and info on astrocytomas/gliomas. Stephen is a selfless genius and we are all very, very lucky that he cares for his friend so much that it turned into a passion to help her live a long healthy life after being diagnosed with a brain tumor, and now it has morphed into a goal to help other people survive.

You guys, let's do this! Let's keep surviving for a cure! That's all we have to do is be like Bond and live to die another day.

The Magical Puzzle

Creating my own candle from all the old excess candle wax:

Planting seeds indoors (to transfer into the garden in a few weeks):

(They're watching the grownups.)

Tickling Lemolo into producing his little Eureka lemons:

(Can you see the baby lemons? - they look like limes.)

I love to repurpose, reuse, create, and nurture. I think my passion for plants has to do with the fact that so much in my life is out of my hands (the big picture anyway). So any time my fingers are literally knuckles deep in soil, I feel at home, safe. Gardening allows me to contribute, to accomplish, and encourage. It's just the little seeds, sleeping in their shells. Then, so easily, they sprout and grow unbridled shoots, with their budding leaves, and arms reaching every which way. And the flowers, with petals waving, fluttering open and closed throughout the day, winking their pistils for the insects. It's breath taking. Like the concept from the old children's book, "Indian in The Cupboard", it's magical.

It's ironic that I had zero desire to garden while growing up. My mom would prod, trying to get me to weed with her, but I would run off. Now, it's my favorite thing to do. If not weed, at least garden. I check on my seedlings, and starts, and bulbs, and established plants every day. Sometimes two or three times. I lean over, squating near the earth, drinking it in with my eyes. There's always another bud, or leaf, or sprout to notice. I'll never get sick of it.

Sometimes, most times, I inventory the little plants with my eyes while my mind wanders off to religion, of faith, of energy and love. I wonder what the true purpose of life is. What really happens when we die. I don't find it morbid, or even depressing or negative. I find it fascinating, and wildly fantastic. The best part is that we can all have different ideas, different beliefs, but not one of us will know for sure until we get to the other side. There's something curious about that, as if we are meant to continue the search, to never settle. That there is always more to learn, to read, to watch, to understand. What a fabulous puzzle we are born into. 

Emma Bombed

Just got off the phone with my parents. I love a good morning chat. This little devil...

...was screaming at me at the foot of the bed from 5:30-5:45 am, then climbed up onto my side and curled up. I tried falling back asleep; I tried reading. Then I gave up. I love having the sun rise at 6:00 am, the morning dusk (or whatever you call it) is so happy, and inviting from the windows, it draws me out. But at the same time, I can't sleep very well when the sun's up. I'm like a flower, the petals just start opening up, I can't help it. Anyway, lucky for me my dad wakes up in the four o'clock hour, so I always have a friend to visit with. And usually we talk long enough that my mom wakes up and joins us over speaker phone.

One of the things we discussed was how embarrassed I was that I complained about the scar and headaches. I realized that probably all of my tumor friends have the same issues. My case is not singular. Are my issues that big of a deal? Nah. It's important for me to remember that.

The Counterintuitiveness of Cancer

Morning. Been a busy few weeks. Mostly good, but a bit of bad. I had another seizure last week. Damn it. Stupid. It makes me sad to not be in control of my brain, and my body. It's very foreign. I don't think I'll ever get used to it. And each time it happens, I still never expect it to happen again. I'm always hopeful that my mind will recover from all of the damage, from all of those lifesavingly intrusive fingers that have probed deep in my brain.

I. Am. Sick. Of. Seizures. And scars. My scar hurts. Badly. I don't normally talk about it, but it's awful, and there is nothing that can be done. It just comes with the territory. The only solution doctors have given me is Botox shots into my skull area, and there is absolutely no way I'm doing that. There have been clusters of nerves forming around the screws where they re-attached the bone, and it hurts to the touch, sometimes throbbing incessantly. And sleeping has become tricky. I dream of an air bubble that can support my head without touching anything. Sounds fluffy, and cozy, and sleep supporting. Of all the problems to have, I realize this is minute, but regardless, it sucks. One good thing is that my girlfriends keep complementing me on my bouncy, full bodied hair. The funny thing is that it's the scar, and the cutting of the hair follicles that caused the regrowth to point almost directly up from the scar. It's like anti-gravity hair. Little victories.

Sometimes the pain is such that I literally feel nauseous. That what today's face is giving. Just off my fingertips is a mass of nerve endings. Basically a fat nub, with irregularities, and some divots. Lately, I find that most days I can't even eat until afternoon because I feel sick. I guess it can be a nice diet. (Stop panicking mom.) To distract myself this morning, I put make-up on. Not a daily occurrence (or weekly for that matter), but I've talked about it before, there's something about tricking yourself into feeling good by making yourself look better. Kind of like smiling yourself into happiness, which, for me, works every time. 

Enough complaining, I have fun news. I harvested my first kale for a batch of popsicles and smoothies! How cool is it that I can grow some of my own stuff!?! I just purchased a popsicle making set from PCC the other day (what took me so long!?!), and I've been munching on them ever since. I am addicted. Even when I'm freezing. I just toss another layer on, even gloves when necessary, then I pop one out and wander around the yard checking out all of my little seeds poking out of the soil. My nasturtiums, sweet peas, giant allium, lupine, cosmos, and my dahlia tubers are peaking out. I even had to throw a batch of broccoli sprouts out (they were stinky) a few weeks ago and every single one of them took to the soil so I have somewhere around a hundred broccoli plants. Woops. Gotta be careful where you drop seeds and sprouts in Seattle in spring, cause pretty much everything grows.

 

 

The whole seizure thing is frustrating because they happen when I over exert, step outside my normal routine and push my boundaries. It's confusing because I feel incredibly capable. I would love to have a career, and be more challenged, intellectually, but the reality is that my brain literally shuts down when I overwork it. And it doesn't even take much. But I'm so curious about life, and I love to theorize, and explore, and learn, but instead of having a career, I'm stuck taking it easy. I'm so sick of hearing the term "take it easy" or "rest" or "don't push yourself" - I'm pretty sure no one ever made major contributions to this world by silencing their brain which is exactly what everyone keeps wanting me to do. I feel like a lazy, unaccomplished hamster stuck on an isolated little wheel at times. It is counterintuitive to work on quieting the brain, to lessen mental challenges, or to essentially numb my mind.

Okay, maybe my nerve nubs are making me a little cranky. I still can't run until the chest heals from the little surgery, that's probably why I'm irritable. Jess needs a run. Rah. So grumpy. Clearly, I should head out for a walk around the lake with Emma to check out the baby ducklings. They've hatched! I forgot to mention that. Best time of year. Those little fuzzy nuggets melt my heart. I'm outa here.

Four More Years

Today is my four year anniversary from diagnosis. We have endured so much, our mental and physical strength have been tested. We've had three brain surgeries. We've moved three times. We've re-learned how to read, and walk, and run. We re-learned how to write and use utensils. We expanded our vocabulary. We've lost the ability to drive, then earned our way back behind the wheel. We've had adventures, completed races, tried every brain tumor diet on the planet, researched and gone to the edge of our limits. We've traveled across the country, even the world, to seek the best treatment. And through it all, I can't help but enjoy every moment (even the tough times). The longer I'm alive, the more grateful I am. It's exponential. I've heard new parents say that they couldn't even anticipate how much they love their new child, and that's how I feel about life. Every day my heart swells with gratitude. I love it here. I love my life. 

This weekend Danny surprised me with several fun things. My favorite was a cat video festival. I laughed so hard that I cried. For about an hour. Anything that can make you cry in joy is a great thing. 

Of course we got out to celebrate our muscles, and legs, and strength, and crazy ability to overcome the effects from the first brain surgery. I can't believe that they told me I probably wouldn't jog/run again. Fooled you guys. Ha!

Dan surprised me by setting up our patio stuff so that I could read my book in our triangle park. I can't believe that spot used to be dirt. You can see Emma's outline under the umbrella toward the back of the trough garden. She's a big fan (left side).

You guys, I'm so happy to be here. I'm so happy to wipe the crusties out of my eyes each morning. I'm so happy to do my chores, to try a new recipe, to have the fortune to run and jump into Dan's arms, and call my parents just to say "hi". Thank you for joining me on this journey. There are lots of statistics out there, but I remember reading one in my first year out. It said that a person my age, with my type of tumor, had a life expectancy of 4.5 years. Statistics used to really scare me. I didn't know what to expect, how quickly I could deteriorate. Now, I know that life isn't about statistics, or where you fall on a bell curve. Life is about how you feel, and how much joy you experience in each moment. It's about throwing numbers, and expectations, out the window, and just going for it. 

Sunshine and Raindrops

Man. I did it again. Fool. I took another narcotic. So I spent last night, and this morning, on the couch watching a PBS special on the crested black macaque, and subsequent programing (ending with Sit And Be Fit - that's where I drew the line). Boy are they cool, by the way. The macaque. I'd been doing fantastic, healing great, keeping busy (gotta love itemized taxes), and enjoying the sunshine and our exuberant garden, when, out of curiosity yesterday morning in the shower, I removed my bandages. Wrong move. Big mistake. I underestimated the roll of the tape. Definitely an important feature in regard to placement, and security, of my stitched fleshy parts - at this point movement and gravity are still smarting enemies. I wanted to see how things were looking, though, because the incisions were getting tickly, and ichy. The red breast tissue surrounding the bandages had given way to a nice sallow yellow, showing clear signs of healing, so I started peeling away at the tape. One thing led to another, and before I knew it I was standing in front of the mirror, dripping wet, checking out my franken-boobies. It all happened so quickly, almost trance-like.

The surgeon did a magnificent job; I was truly surprised. I mean, I shouldn't have been since he's a well known reconstructive surgeon, but still, when they're cutting in such sensitive areas you never know how it will turn out. Looking at my sliced breasts, my eyes welled up a little. Immediately, it was because he did such a precise and beautiful job, but the second wave was because of the relief. The relief that it was over. I have a habit of moving forward, stepping over or around any hurdle in my path. I get scared while I traverse the new territory that I must overcome, but it doesn't stop me, I keep going. But sometimes, after the fact - once I've had a moment to regroup - I catch moments of reflection where I realize just how hard the bumps have been. Once you're out of the heat, you can breathe, and let your guard down, and allow yourself to morn for your body. That only lasts for a few moments in my world, though. I find it tedious and dull to feel bad about things. I have all the human emotions, but I don't like to get caught in the toilet bowl of sadness for too long. Thankfully, my attention span for sad things is very short. Maybe it's a defense mechanism. Who knows. Who cares. All I know is that I'm a lucky (or annoying) person who is easily delighted by both sunshine, and raindrops, volunteer plants growing in cracks on sidewalks, sharing a bag of baby carrots with Emma (she gets all the fat ones, and I get the skinny ones - it's our deal), the delicious scent of pollen carried by the wind, the memory of my niece and nephew's laughter. I'm an easy keeper.

Before and Current. The garden is taking shape! Time to get out and continue the never ending job of weeding. (In the background you'll notice my rudimentary trailing system for my sweet pea fence. Can't wait for that to grow in!)

Total Knockout

It's pushing 1:00 am and I can't sleep. (Party animal!) Probably had too much fun in my troll-ish sleeping under the bridge episode with the general anesthesia. Man was I out. The whole day was a bit funny. I wasn't supposed to eat or drink anything, but sometime around 10 am-ish, I cracked and ate a deviled egg. If I go too long without eating or drinking, I can get really ill, causing a major drop in blood glucose which has a couple of times scared me into thinking I was having a seizure. Or maybe I did have a minor seizure. Not today, but in the past. But whatever. So I ate the egg. I really didn't think it would be that big of a deal. The way I thought it was all going to go down was that I would get a mild sedative, and be slightly awake for surgery, not a full blown knockout. Flash to pre-op, and all of a sudden it was a big deal, with all these threats of vomiting myself to death. Now, I'm not a newbie to GA, or the dangers of eating before surgeries, but I honestly didn't think this whole thing was going to be that big of a deal. Was I scared? Hell yes. Did I also know that the surgery had to happen and that it'd be advantageous to get over myself and just deal? Ya, you bet. Did I think 45 calories would bump me back on the ticket? No. Not really. Then, a nod through the curtain from my fantastic surgeon who reminded me (I had forgotten, or conveniently blacked out) of the fact that I was also getting a resection on the left boob as well. So I was the winner of a bilateral situation. Oops. Forgot about that minor detail. Double the fun.

So, after delaying the surgery for 2.5 extra hours because of deviled egg-gate (Spent playing charades with mom in pre-op. Side note: turns out we are decently acceptable players), I was wheeled into the OR at around 3:30 pm. Cut to some hot liquid entering my body via my IV, and a sleepy feeling, and then a mask over the face. The next thing I remember is being wheeled out through the doors from the operating room to post op. It was quarter after five, and someone said, "How are you doing?" And I said, "I just got so much done! I've been in meetings all day, answered about 200 emails." Then the first voice giggled and burst my bubble, telling me that it was all a dream and that I just finished surgery. A confused grin spread across my face; I wasn't convinced. Then, reality hit (probably as the drugs waned out of my system) and I was kinda bummed. Clearly, my subconcious thinks I'm some sort of kickass CEO or something. Not a bad alter ego to have, better than an endless dream about cleaning vomit after vomit after vomit or losing a knife fight, I guess.

I was released from the hospital sometime in the late six o'clock hour, just in time to finish up rush hour traffic. Perfect. We were home a little after 7:00 pm, and I proceeded to eat everything in the house. A true Oldwyn. Never lacking a desire to munch. Some people wish for more energy in life, I wish for a quell in appetite. At age 33, though, it may be time to just give up. Things probably won't be changing.

Side note: Shouldn't these Oxy pills be making tired? What the fizz. I will never completely understand narcotics.

Lots of favorite parts of my day, but only one with a photo. Surgery waiting rooms these days are like going to Chilli's. They have buzzers for when we're done, or if there's an update with our condition. Very fancy. Note: I haven't been to Chilli's since 2001, so don't be upset when they don't have the buzzer system. I was just illustrating a point. 

It is both very fun to be awake this late, but also exciting to think that I might be able to tickle Dan awake in the five o'clock hour for work. There's not much more in life I love than waking people up. It's perversely gratifying for me. It's like this, in my mind, "Ha! I caught them! And they're asleep!" Not to trumpet my skills, but I'm pretty good at catching people. Here's a trick, make lots of friends who are night owls. But that's all I'm going to give away.

Cramped Cottage

I'm still carrying the love that was shown to me over Friday Harbor fundraiser weekend, so thanks guys (especially Courtney, Melissa, Candyce, Rene, Leisa, Mike, and Kaal for putting on the barn dinner). I'm pretty calm this morning, even knowing I have a date in the OR at 1:00 pm today. I'm more upset that I can't have a cup of coffee or eat anything. The anesthesiologist mentioned small sips of water. Boring. I should have eaten a big dinner last night. Like a big fat bun-less buffalo burger with brie cheese. Rats. I wish I could eat the blackened chicken breast in the fridge, or the deviled eggs, or the sprout salad I grew and harvested (just gotta toss some of our tahini sauce on it). Yes! Or anything. Oh, the macadamia nuts, or the soy nuts, or the celery or cucumber to munch on. I'm desperate! But a hot cup of delicious coffee with a tablespoon of grass fed heavy cream....yummmmmmeeeee. The creaminess. I guess that would be my #1 choice.

I've been distracting myself, but now I'm just ready to get this overwith. It's supposed to rain from now through the weekend, ugh, I'm going to get cabin fever, I can already feel it. There's only so many episodes of Nova that I can watch. I'm all about nature, but I can't stomach the animals eating each other, blood all over their coats. Yuck. I've definitely gotten smarter without cable (literally), but it has also ruined my ability to zone out at mindless TV. I lose interest. 

Alright, I'm off to do some ironing. Here's a few fun pictures of things growing in the house and the garden. Hope you find them as cool as I do. I'm a simple girl, easily excitable.

Before

After

Day 1

Day 3

Day 4

Day 5 (still growin'!)

My sprout condo, so I will never go a day without broccoli sprouts. Which of course  I do because I'm terrible about timing. 

Hope you all have a great weekend. Fingers crossed that the doctors will say I'm cleared to walk on the treadmill, so I can bust out of our little cottage and make my way to the gym. I'm not into soggy walks. Soggy runs? Sure. Because when you run you keep warm. I've tried waking in the rain and it's miserable. Awful. I feel like a dog that's getting a bath. Not fun. I'm rambling. I'd better get my act together, my parents will be here before I know it and there are a lot of unhappy wrinkled shirts glaring at me from the couch. I'd better save them.