Bus Bacteria Bad. Brain Bacteria Good.

Hey Guys,

What is it about summer that causes it to go faster, and faster, and faster, until you lose your mind? Or get sick. I get sick every few years, and never in the summer, but lucky me, that's exactly what just happened. I must have licked my fingers after touching things on the city bus or something. (Gross!) But life doesn't stop when you get sick - kinda like cancer.

I'm busy with gloriously fun things like promoting the MLD docu-series with interviews, corresponding with tumor patients/caregivers, and visiting with out-of-town friends, all peppered with doctor appointments.

I'm not sleeping well because of headaches, which is a constant reminder of the fact that my brain tumor is growing again. I'm fine during the day, I'm so busy that I can't even keep up, but at night, as soon as I'm vertical, the pressure in my head grows intense. It's come to the point where I am back to relying on headache medicine. I hate having to do that. I'm grateful that my seizures have remained stable, though, which feels like a Christmas miracle.

I like to think that the headaches are because I'm doing too much, trying to conquer too many things, maybe I'm not organized enough, anything but the mass of rogue cells multiplying in the folds of my brain.

Last weekend I turned 36, and although birthday goals are a newer thing for me, I have it in my head that I want to live past age 40, and not be sporting a wheelchair/walker while I enjoy my cake (although decorating those items sound kind of awesome). That fear is based off of my horrible luck with brain surgeries. Granted the most recent one healed pretty well, but man if that second brain surgery didn't give me a run for my money.

Good God, I'm in a morbid mood. Must be the fever.

That doesn't mean I don't want to live a long life - obviously I do - I just want to make baby goals, which feel sustainable.

A famous Bonnie Birthday cake. Delish!

I'm scared for this next brain surgery, and unsure if I will do it at UCLA like my previous one. If I have to endure a 4th brain surgery, I want to make it count. Originally, the back-to-back brain surgeries in 2010 were at University of Washington in Seattle, then I wanted to do the clinical trial using dendtric cell therapy for diffuse astrocytoma which was at UCLA, so I headed down there. You may remember that after the surgery, I was told my tumor didn't meet the parameters of the trial (my tumor tissue was too integrated with healthy tissue). That forced me to Germany trying to get my own dendritic cell therapy. There aren't many clinical trials for my type of tumor, or grade, so we are forced to get worse before we can hope to get better. That's the system that I'm in. It sucks. So I need to continue my search for possible brain surgeons that are offering more than just a surgery. I want try something innovative, something more. I'm not sure if I'll find anything, but I kind of want someone to put bacteria in my brain.

Okay, I still have two more phone meetings tonight and I lost my voice, so before I lose all ability to think I'd better wrap this up. I do have more exciting news, though. Danny and I are being flown down to LA next week for the premier, and a showing of My Last Days. We get to go see everyone who filmed, and meet the rest of the folks that were featured. I can't wait! I mean, I can wait because I want to be healthy. Otherwise I might have to show up in a bubble so that I don't infect anyone. I will now power down my brain for a quick quiet moment. Sending everyone love, and thank you as always for loving and supporting us!

UW Results

As always, we have to confirm with UCLA, but the preliminary findings of my MRI is stable. The FLAIR signal in the tumor cavity is slightly increased. However there is no enhancement, and no new nodular area. There's a venus abnormality that they've been watching, but I'm not too concerned about it.

All-in-all a great scan. I had been terrified, even convinced that there would be a new lesion, since I've been eating horribly, including a 20 lb weight gain - pure sugar. I've always equated excess calories as food for the tumor so the fact that there isn't obvious tumor growth is a freaking miracle. Apparently diet isn't the end-all-be-all of cancer growth. (I'm sure it matters, but who knows how much, and for which cancers, and which people?)

I'm obviously relieved, and can now focus on treating myself well because I want to. I can exercise, and eat right, because it's fun, not because I'm scared and feel responsible. I had been punishing myself, even daring the cancer to come back and prove me right. I know that sounds disgusting, and selfish. I felt that when I get good results, when I succeed, I still watch my friends get sicker. So if I have a good scan, I lose. And if I have a bad scan, I lose. I lose either way. I feel guilty being "heathy", even though cancer has taken so much from me. From us. 

It's really hard to be fearless in this situation, and very hard to not get stuck. It's time for me to stop punishing myself for success, for my good fortune and hard work. I don't know how to manifest that, to forgive myself for being alive, for being able to mow the lawn just now. That guilt has no place, I realize it, but it's there nonetheless. 

On Wednesday, through the help of a girlfriend, I was able to take my nephew KC to We Day (http://www.weday.com) where I watched thousands of seventh grade world changers. The kids are fearless, they're kind, they're big thinkers and problem solvers. I'm going to try to harness their spirit and attitude to get outside of myself. When I get in a rut, when I feel paralyzed, I need to remind myself to find inspiration. It always helps. For being an extrovert, I can certainly disappear from friends, from family, I can get scared, and filled with denial and avoidance, and that's fine from time to time, but if we don't look out, and see what's around us, who needs help, how you can have a positive impact on those around you, then what's the point. 

I'm just really relieved about this first set of results, and grateful that I didn't shoot myself in the foot with diet and lifestyle choices. One of the saddest things that we can do in life is give up, or take our health for granted. I'm embarrassed to say that I feel like I kind of had. But not any longer. There's probably a fine line  between giving up and enjoying yourself, and one of these days I'm sure I'll figure it out.

A Film Crew?

Hey Guys! Thank you for all of the birthday comments, texts, and emails, and phone calls, and Facebook messages! You guys all make me feel deeply loved.

On my birthday Dan surprised me by taking me on a bike ride along the Burke Gilman, which I have run but never rode. Riding bikes on the BG is awesome! I's mostly flat and you can literally ride for miles and miles. It's stunning.

But that's not even the biggest news. One part of the big news is that I am flying back to New York next week, the 19th, for an attempt at another immunotherapy shot. It should be fine though, I'm expecting smooth sailing so to speak. 

The next part is that in 24 hours or so, SoulPancake a media/production company ("We create stuff that matters. That opens your heart. That makes you think. Our mission is to help you and your audience figure out what it means to be human and feel damn good doing it. Our brain batter of art, culture, science, philosophy, spirituality, and humor is designed to get people talking, sharing, and engaging with this crazy, exciting, creative journey that is life."), along with WayFarer Entertainment, is sending out a crew to film Danny and I for an episode of a series about people who get diagnosed with cancer. It's kinda crazy, and a huge honor to get to share what we've gone through, and share how we live our lives. My hope is that we can make others feel more comfortable about what they're going through, or have experienced. And that goes for people who have been diagnosed with cancer, and those who haven't. 

We all have hard things that pop up in life, and personal stories always help me, so I'm hoping to inspire others and put them at ease. People often ask me how I've been able to do what I've done (defy odds, find new opportunities health wise to live longer, relearn talking, reading, and moving my body) and all I can think of is how important it has been to be stubborn/strong willed, curious, passionate, easily inspired, and easy to laugh. That combo has been a saving grace. I always say this because there are no guarantees, but this type of cancer, the infiltrating astrocytoma is invasive and virtually impossible to survive solely by conventional methods. And since I'm not as hard core as I once was, there is always the possibility that the cancer is growing inside me. It's a very real, very scary reality. But if I just panic and miss the beauty in life, constantly living in complete fear, then what was the point in life? What was the point of me being on Earth? So I try to keep things in perspective. I try to maintain a balance between enjoying life and maintaining my health; constantly oscillating between two worlds. Sometimes they overlap, but often times it is an exercise in control and depravation. 

I'm nervous for the film crew, but also excited. It's very surreal, and terrifying letting people come into your life, your home, to see exactly who you are, your mannerisms, your quirks. Clearly I've been doing it for awhile, but it's different when I'm doing the blog. With the blog, I have complete control over editing on what I choose to share in my life. In this situation, I don't. I'm also not a fan of watching myself on video (hence the lack of video blogs). I'm an emoter, a sharer, an open book, but I tend to express myself verbally with the written word. I keep reminding myself that this is only through Sunday, and after that it will all be over. So I need to be in the moment, and have fun and enjoy the oddity that will be getting filmed. I will blink and it will be over. But what will last will the memories, and the documentation of when the show airs. That will be a beautiful treasure.

Polar Bearing for FD

Alright, sorry for the delay. We've been inundated with friends all weekend. Yay! So we've been enjoying the company, and now it's time for the results of the fundraiser. Drum roll please.........we did it!!! We climbed 51 climbs, I believe. I knew we wouldn't be able to remember all of the climbs so we took a photo of each route we completed (many we climbed a few times). I'm uploading the photos to prove it, although we did sneak in some kid's climbs, but hey, they were still 10-12 foot climbs, and of course we had to do climbs in the bouldering area (okay okay, we did mostly bouldering to get the quota). Those count, right?

We had so much fun climbing; you can't beat that crew! And in honor of all those magical donations which I consider the equivalent to a bunch of carebear stares to hearts you've never met, nor likely will, Dan and I ran into the drink today to say thank you.

And the video to prove it:

It's far away, and you probably can't easily tell, but I pulled off a shallow dive and we both went under the water for a full dunk. We also spooked three huge rock crab. One of them was missing a pincher, poor guy.

Here's a photo with our photographer, Burke. After filming, he set down the camera and ran in too! So look at that, you inspired a whole new person to get "OUT LIVING IT".

Thank you again for the AMAZING success of this fundraiser. You all completely blew us away with the continued generosity, and support. Please know that the money that you donated is truly going to have an impact on young adult cancer people. It was a turning point for me, a huge eye opener, and one of the best weeks of my whole life. When you get diagnosed then get thrown into the medical system, it's overwhelming and your whole life changes. It's terrifying, and sad, and you have amazing friends that come together to help you, but there are others who pull away, or whom you must pull away from to avoid toxic relationships. All of a sudden your whole life is survival. Your body changes as they cut, (and burn and poison) you're told you don't have long to live. The whole process is overwhelming, shocking, dumbfounding, impossible to relate. So when an organization forms to help us young adult humpty dumpties put ourselves together, it is not only generous and kind, it's profoundly needed. Young adult cancer patients have the worst survival rates. It's scary in here, in this group, and we need support to continue to mend, and flourish. So thank you for helping do that, and thank you in joining us in paying it forward. You have all touched my heart so deeply.

Climb-A-Thon FD Fundraiser

Dan and I found a way to fundraise for other cancer patients to join First Descents on an adventure camp retreat - by fundraising we make the camp free to the cancer patients! Here is my story from the fundraising page. I'm so excited at the idea of more cancer patients getting to enjoy the experience that is FD. It may be crazy but we're hoping to raise $3,000. In 10 days. Yep, we're crazy. PS All donations are tax deductible! (click to donate)

Hi Guys, 

Welcome to our First Descents Climbathon fundraising page! Very soon, on April 18th, Dan and I will rock climb to raise money so that more cancer patients/survivors can enjoy the life changing experience of a First Descents camp. We signed up a little late, so we only have about 10 days to raise money before we climb our hearts out. Our goal, in the three hour time slot, is to do 50 climbs between the two of us. Is that insane? Yes it is. But, if we divide it by two, that's 25 climbs apiece, then divide it into three hours and it's less than 10 climbs per hour per person. Is it possible? I don't know! But good gopher we're going to give it our all. 

My lovely blog readers, friends, and family, have heard me sing the praises of what a First Descents adventure camp did for my morale, my confidence, my soul, my spirit. It was epic. I also gained profound friendships, soul siblings. They're family. Please help us support First Descents and its mission to provide amazing outdoor adventure programs for young adults impacted by cancer. Please consider making a donation. I can't emphasize enough how excited I am to be raising money so that others can enjoy what I've already been able to experience.

As many of you know I was diagnosed with a brain tumor on April 13th, 2010 at the age of 29. I had my first brain surgery on the 27th of that same month. It was an awake crainiotomy. They literally put me under, sawed open my skull, woke me back up and dug around in my brain with electrodes, and tools, to determine what was tumor tissue, and what was healthy brain tissue. During the process I was joking with the doctors and answering their questions - it was wild! They awake craniotomies in cases where the tumors grow dangerously within important areas of the functiong brain. For me that area was speech, language, and movement. I was at risk of being paralyzed on my right side, of being unable to process or use language.

Not long after the eight hour brain surgery, my body created a blood clot in my brain along with hemorrhaging in the tumor cavity. It required a second, emergent brain surgery. When I came out of the second brain surgery, I was paralyzed on my right side. I couldn't say more than a one syllable word. I didn't know the months of the year, or the days of the week for that matter. I couldn't recognize everyday items. I couldn't walk. I couldn't feed myself, or even wipe my own bum. The doctors and nurses said I would not get better. And they were almost right. It took shy of a full year to learn how to read  again, and run the way that I used to, the way I loved. I still get better every single day. 

I have since had a second brain tumor grow, and it was resected. I have been doing active treatment ever since (two and a half years). My treatment protocol is intense and dedicated. I've flown to other countries for immunotherapies, I swollow hundreds of pills a day. One of my main treatments must be refrigerated, and it requires applications of medicine every four hours. (This is how I have to insert the medicine up my nose every four hours.)

When I went to my First Descents camp I was nervous because of my treatments. I thought  I wouldn't be able to enjoy all of the activities. But the First Descents crew, especially "Honeybucket", made sure that I had my medicine, going as far as strapping the cooler of my treatments to her back as we climbed. (My medicine is in a cooler in that gigantic backpack.)

For the first time since my diagnosis I wasn't the weirdo doing treatments, or the girl who had to stay home because of seizures. I was free. I was supported. I was normal in a sea of my peers. Just writing those words, remembering the freedom, has caused me to start crying happy tears. This is what I want to share with others. I want to pay it forward so that no other cancer patient ever feels alone, or weird, or isolated. We are not meant to be alone, solitary. It puts a damp cloth on the fire of our soul.

There is no pressure here, but if you can't make a donation at this point, please help me reach my goal by sharing this page on Facebook and Twitter. Or, even better, send an e-mail to friends you think might be interested in contributing and include a link to my page!

Thank you for loving me, for supporting me, and for helping me pay it forward.

With love,

"Coconuts" (and "Huckleberry" too!)

Want to donate? CLICK HERE

The Glass Box

I hate saying this. I hate that this is the situation; that this is how I feel. But, this is a tumor blog and it's where I go to share my journey, so here goes nothing....

Tonight I went to a couples baby shower. It was at an understated, yet trendy bar full of friends. There was laughter, and hugs, and back slapping, and smiles. The celebration was for a specific husband and wife, but half of the women there were pregnant, so by default, it was a celebration for several along side. 

I got the chance to catch up with my beautiful friends, which was lovely, and yet painful. I even cried on the drive home, which is incredibly rare.

Throughout the evening, as I got caught up with people's lives, I couldn't help but notice the disparity between who I would be if I hadn't been diagnosed (a career, the ability to drive, financial stability, perhaps children). As I listened to people speak, with a smile on my face, I felt myself mourn for my old self. I mourned the person I could have been, of who I was on track to be.

I love watching my friends deliriously happy, so excited with their life's journey. But it's also confusing. It's uncomfortable that being around friends makes me both happy, filled with joy, and yet regretful, deeply saddened. I hate that I feel that way.

Currently, I am stuck on a hamster wheel of treatments and won't be finished for years. My life is lived in 4 hour increments, and I should be thrilled by that luxury since it implies that I'm doing well. But it is also extremely taxing. I can handle the stress when I live in my bubble, when I bound around the house being silly with Dan, or off jogging with Emma. It's times when I'm social that hurt too much. That make me feel isolated within a crowd. I can't relate. It's as if I'm in the room, but surrounded by a clear glass box. Alone. This girl who used to be incredibly social, even labeled vivacious by some, has morphed into an introvert. A person more comfortable by herself.

I am very grateful to be alive, please don't get me wrong, but I don't know if I will ever get used to living in limbo. I am putting all of my energy into these treatments, all of our money, and energy, and if they don't work then I will have wasted precious time that I could have spent crossing stuff off of my (yet to be written) bucket list. 

I hate that I'm so self absorbed that I couldn't even completely enjoy such a special occassion. Lots of "hate" in this post. I hate that too.

UCLA Results

I finally mustered the strength to call UCLA for my MRI results. They agreed with the UW radiologists that there is no visable tumor. The fun twist is that instead of automatically planning my next MRI with a Dopa PET at UCLA in October, they recommended that I just stay here in Seattle. If the Seattle MRI shows up questionable, then I will need to fly down for a Dopa PET. So now, all I need to do is keep fighting, stay healthy, and have no new growth in October. Not having to fly down to UCLA would be a huge relief, both financially and emotionally. 

Flowers from Danny after the good news...

My brain is still hazy and slow after my seizure, so this is all I have in me to write. Like an earthquake, there are aftershocks of energy throughout my brain and at times it feels touch-and-go so I really need to force myself to rest. As it always is, I know the threat will subside the longer I make it from the seizure. I just have to be patient.

For now I will relax, falling asleep for my nap with relief, and a smile. I can deal with seizures for the rest of my life, I'd be happy to. Compared to the tumor, they're just like gnats. Annoying, but I can live with them.

Angels Everywhere

A guardian angel left a rainbow trail today in the middle of the afternoon. Don't see that very often. My photo doesn't even begin to do the colors justice. There was no rain, no precipitation whatsoever. I have no idea how it occurred, but it was magnificent. I've never seen anything like it. It felt alive, as it waved, and inched across the sky. A happy sailor.

According to the MRI tech this morning, we should have the radiology report on Monday afternoon. I have to head down to the medical records department at UW, and check it out, then fax it over to UCLA. I'll let you guys know how it goes. I have no inkling, no premonition, no intuition one way or another. All I do know is that it's a beautiful day, here in Seattle, and I am worn, exhausted. I am sitting, wrapped in a blanket, my feet wiggling as the sun licks my toes. It makes me deeply happy, can't help but laugh at the simpleness in this moment. 

Schedule of Treatment

Seattle is as beautiful as ever today. Just finished a quick jog around the lake, and it felt GREAT. I'm still jet lagged (only got 5 hours of sleep), but I'm starting to feel less and less punch drunk.

My MRI is tomorrow at 10:30 am. I'm nervous as ever, but so it goes, I know the drill and it can not be avoided.

Here is a main run down of my trip to Germany...

Day 1
Arrived Frankfurt and took the train to Gottingen (2 hour ride on the high speed)
Spent the night in Gottingen

Day 2
Taxi to Duderstadt (30 min ride)
Checked in at clinic for blood work and met with Dr Germany

Day 3
Leukephresis (2.5 hour allotted appointment)
Met with Dr Germany

Day 4
Hyperthermia
IV of immunotherapy (each IV included 1 billion)

Day 5
recover

Day 6
recover

Day 7
Hyperthermia (cancelled due to reaction)
IV of immunotherapy

Day 8
Hyperthermia (cancelled due to reaction)
IV of immunotherapy (cancelled due to reaction)
Met with Dr Germany

Day 9
Hyperthermia (cancelled due to reaction)
IV of immunotherapy

Day 10
Shot of my dendritic cells (13 million) primed my immunotherapy
Met with Dr Germany
Took taxi to Gottingen and spent the night in hotel

Day 11
Took high speed train to  Frankfurt and spent the night in hotel in airport

Day 12
Flew home

Each time I got an IV of my immunotherapy I got a slight fever, was dizzy, and exhausted. I slept most or all of the day after each shot. The hyperthermia was not tolerable so I only did it once. It caused massive headaches - incredibly severe. It was so much so that Dr Germany stopped the treatment. He said that the most  important treatments are the immunotherapy shots and the boswellia supplements. Both are scientifically proven to shrink astrocytomas.

From here I have the following shot schedule.....(each will be administered in NYC)


2013
February 13 (with Christel)
March 20 (with Libbey)
April ?
June ?
August ?
October ?
December ?

2014
March
June
September
December

2015
April
August
December

For years after that I only have to do three shots per year.

The first year is going to be disgustingly expensive, but hopefully it will all be worth it! :) Because I'm doing the shots in NYC (not Germany) they are around $7,000 apiece. Yikes! I already have February's trip booked. Oddly, it is cheaper to get a hotel for two nights one block from the clinic and a flight than just a flight alone. How crazy is that?!? The clinic gives dates about 4-6 weeks out, so I'll need to be flexible. The shots are always on a Wednesday, that's a guarantee.

Just talking about all of this makes me SUPER excited. I can't believe I'm doing this!! I'm still working on all the financing, but I know we'll figure it all out. One way, for sure, will be a second annual cherry sale. And this time I want to be there to help out and say hello to everybody (last year it was just too overwhelming). Dan and I are really excited to join in on the cherry fundraiser. And if it goes well we might do a follow up with the soft fruits (peaches, nectarines, plums, etc.) and then finally apples. It would be a total of three fruit sale occasions. I'm getting ahead of myself here, but it's all so exciting!! I feel really good about the fruit idea because you guys get something in return. I feel very uncomfortable just asking for money. It just doesn't make sense to me. We all work very hard for our money and I'm happier when I can give you a delicious treat. Okay, enough of that. I've obviously got jogging endorphins surging through my brain :)

Cheers to a great weekend everyone, and fingers crossed for a great MRI!

Slogged The Whole Lake!!

Dan and I just slogged the lake!!! We went through the blustery rain, a total of three miles in 45 minutes. A pace of just under 13 min mile. No stops.

I'm enjoying focusing on getting better. I have completely revamped my diet, back to its' normal state, along with restricting my calories by 30-40%. It is widely proven that a carbohydrate and calorically restricted diet helps starve tumors and cancer in general. If you calculate the proportions correctly with enough healthy fats and delicious protein, you have enough energy and tend to be satiated. Inevitably, there will be times when you're hungry, but hunger is not that big of a deal, just put water on to boil. Decaf teas of various flavors become your proverbial box of chocolates. And, they heat you up instantly, unlike the type warmth you get from candies (if you know what I mean).

Tomorrow I find out if I'm able to head to Germany for dendritic cell therapy....I'm so nervous!!

To distract, Dan and I decorated our Charlie Brown tree (that's Dan calls it anyway).

By the way, I still haven't gotten back into email or Facebook. It might be a bit. I'm starting with blogging and I'll continue to integrate slowly. I'm happy though, and very excited about how well things are progressing. I'm sleeping a lot, but that makes sense since I'm pushing myself quite a bit. YAY! I love pushing myself!!

Criminal Charges

Well, today is off to a great start! After playing tag with the Seattle assistant district attorney, she let me know that the city is in fact going to press charges in my attack case!! Apparently, the city receives over 200 new cases a week, and they were very clear from the start that there is no guarantee that charges would be pressed. This case has bounced around a bit, within the system, and I've had to give my statement several times. Each time it was hard, sad, and stirred quite a bit of emotions.

When I heard the news this morning, I thought I would be relieved, happy even, but instead I'm sad. The man who attacked me is married with four children. The oldest is 10 and the youngest is a set of infant twins. I did not intend to hurt his family, but in order to keep others safe I felt compelled to help the city press criminal charges. I know that this man has sexually accosted two other women, and he has become more and more aggressive. To attack a woman in her own home, working as her maintenance man, is incredibly brazen. This man should not be working in people's homes.

Anyway, I'm off to catch the bus for another counseling session. Alison is going to be THRILLED by this morning's news!!

Also, I included three photos from Saturday night. Throughout the night I was reminded of how wonderful our friends are. I am so glad that our buddy Eric got his job at the Blume Company, where he met Meghan who is married to Sean, who he then introduced to Dan, then Dan included me, and now Meghan and Sean have introduced us to all of THEIR friends, and Dan and I now have a huge network of fabulous buddies. There is no limit to the kindness of those around us, we are completely surrounded by love and support. And I know it's not just Seattle, it's Friday Harbor, Wenatchee, Poland, Sweden, and so many other places. Thank you! I am always grateful for all of the hugs and support. Especially with this upcoming clinical trail. I've been battling panic attacks, that's why I hadn't been posting lately. But, that's for another post, I've got to get running for the 358 or I'll be late!

Moving Out

Sorry I'm still not back to a regular posting schedule. Last Thursday, the counseling session was fantastic, and it prepared me emotionally for the appointment later in the day with the detective. The therapist helped me put the whole attack in perspective. I cried a good deal, and was able to discuss not only the attack, but also, all of the stress involved with our landlords. Unfortunately, we have to move. It has all been pretty unexpected, but step by step, it has become more and more uncomfortable to live here. All Danny and I want is a safe and happy home where we can focus on being healthy. We are moving out tomorrow. Each step of the way, dealing with our landlords, has been painful and sad. I wish I could say everything horrible that they've done, but I feel like it would be an ugly decision for me to make. There's no need for me to drag their names through the mud. They know what they've done, and how they've acted, and I'm not going to be able to teach them a lesson about kindness, empathy, or anything else. If there's one thing that I feel certain about, it's that you can't teach anyone anything. You can only be yourself, be honest, stand up for yourself, and avoid unnecessary stress/drama whenever possible.

Speaking of stress and drama, we've got only the good kind for the next two days. My parents will be here tonight, and we'll be packing today, then tomorrow we move out and into our new home. I have another counseling session tomorrow night, and I know that it will help me continue to heal. I feel like things are getting better and better. I feel relieved to get the therapy I need, the promise of a safe home with new landlords, time to heal and gain strength so that I can focus on  preparing for the clinical trial.

I need to be strong physically, mentally and emotionally. I must feel confident, yet relaxed and ready to conquer the world if I'm going to successfully undergo another brain surgery. For now I'm happy to I have the time to get back to walking the lake, then jogging the lake, focus on eating healthy, trying new recipes, stretching my limbs with yoga, and enjoying each moment of my amazing life. I'm so lucky, and happy to be alive. Even when things are tough, I'm still grateful to be breathing. Over the past few weeks, even at the lowest point, although I was scared, I just hoped and hoped that things would just get better. I day dreamed of jogging the lake, of laughing with friends, of walking to the grocery store and enjoying the little things of my daily life. All of those hopes, all of the wishing, culminated on Saturday night at our friends Laura & Eric's wedding. Finally, Dan and I were able to laugh, dance, visit with friends, enjoy the gorgeous day, the fresh air, the beautiful faces and happiness of their family and friends. It was perfect. Weddings are so much fun, especially when they're for people you love. Over the course of Saturday night I became more and more confident that Dan and I are going to pull through any hard times. I remembered that life isn't about the big things (cancer, the attack, the landlords, etc.), it's about hugs, laughter, stories, dancing, and love.

Message from Dan

Hello everyone, this is Dan

Since Jess was attacked on Tuesday, she has been dealing with a incredible amount of stress inducing situations. She has been dealing with; getting our locks changed, working with police officers and detectives on the pending criminal case of her attacker, scheduling her recently approved tests with UCLA to possibly start her clinical trial, scheduling her travel itinerary to UCLA, all the while going through the process of dealing with her attack.

Due to all this stress Jess had an aura on Thursday, followed by another on Friday. The two Auras happened while shopping for replacement items for the bathroom in an attempt to change the decor. All this has lead to me declaring a technological lock down and putting Jess on 'restriction'. She will not be allowed to blog, text or email until her level of stress has sufficiently decreased. Please do not take her lack of correspondence personally, it is a necessary action to preserve her health.

Jessica is extremely worn down and needs to let her body rejuvenate itself. I will be postponing her appointments at UCLA for one week. Hopefully this will give her enough time to start healing and speak to the detective handling the criminal case of her attacker on Friday.

Thank you for all of your support and sympathy for Jess, she will be back soon. Probably sooner then I wish.

Attack

Yesterday I was attacked in my shower by my maintenance man. I am terrified. The police are involved. I might not blog for a bit. Thank you for understanding.

Clinical Trial?!?

A random artichoke plant along the road off Green Lake. Beautiful!

I have big news, but I have to start at the beginning.......

I've been exhausted trying to navigate supplements, treatments, etc. It has gotten so bad that I haven't been sleeping well, and I'm constantly tired. After my most recent IV treatment, Danny and I realized that if we're going to fight to get healthy, we need to exercise every avenue. And yet, we don't have unlimited funds, so we have to be smart about the treatment choices. Instead of paying for IV treatments, which are good, we need to head for the hills for something great. So.......I contacted Dr Germany's clinic in Duderstadt. I've been gathering information about the various treatments available, including dendritic cell therapy, immunotherapy, and hyperthermia - all three treatments are very effective against brain cancer, especially when used in combination. After talking with Dr M, at the clinic, Danny and I were all in - incredibly excited and hopeful. We vetted the clinic and with no ill information around, we were convinced. We even started talks with family friends about acquiring personal private loans to help cover the costs.

As you can probably read, things changed. There's nothing wrong with Dr Germany's clinic, in fact we may still end up heading there, but guess what.....this is huge.....I might be accepted into a clinical trial. Let me tell you about it.....

There is a clinical trial at UCLA for low grade gliomas using dendritic cell therapy, headed by Dr Linda Liau. I would need to get another brain surgery to harvest more tumor tissue, it's important to use the most fresh tissue available. I would not have to do radiation or chemotherapy. The only cost would be whatever my insurance would not cover from the brain surgery, MRIs, blood tests, etc. Whatever the cost, it should still be cheaper than going to Germany, and with the fresh tumor tissue the treatment would be more effective. I double checked and since this is a phase IIa clinical trial, there will be no control group, no placebo, all patients would receive treatment, a dendritic cell vaccine personally created with their own tumor tissue. This is HUGE!! I still don't know if I'll get accepted into the clinical trial, but I'm very hopeful. Instead of heading to Germany, I might be headed to LA. Either way, we're headed somewhere, whether it be Germany or LA, something is happening.

I had been reading about the clinical trials in the USA, there's one currently being conducted at Swedish, here in Seattle, but it's for glioblastomas. I knew that Dr Liau was conducting a clinical trial at UCLA for low grade gliomas, but foolishly, I had assumed that I would have to do radiation or chemotherapy first, and I assumed that there would be a control group with placebos. This is fantastic, and exciting. The only reason I contacted Dr Liau is because my friend Jessica, who is also fighting a glioma, emailed me with correspondence. I figured I might as well email the good doctor in charge. I'm always interested in getting my questions answered, and thank goodness I did. I could have missed out on an amazing opportunity. Of course, I have not been accepted into the trial yet, but I'm hopeful. And if it doesn't work out, then, well, I'll just head to Germany. I have wonderful sulforaphane pills, curcumin, and all sorts of fantastic things that on their own could cure me in their own right, but truth is, Dan and I feel like we should attack everything from all directions....because....why not?!? Let's do this. Anyone interested in another head shaving........

Jess is Juicing Again

Uh oh. If you remember a year or so ago, my mom surprised me with a juicer. I continued to create the most nasty concoctions, liquid evil, that would make even the most open minded health food fanatic cringe and scold me. In this new phase, I've decided to follow recipes, and you know what, those little juice chefs really know what they're doing! My first juice was DELICIOUS. I am addicted to a place called Thrive in Seattle. It's a raw vegan establishment, serving my favorite juices, including spicy shots of various greens. I used to favor a different type of liquid lunch (and still do from time to time), but now I've become a complete juice head.

It's interesting, I've never liked juice. Boxed, canned, or bottled juices are all so gross, they're too sweet, and I feel like they're not even good for you - there's too much sugar and yuck, don't even think about the preservatives. I used to laugh, and tease my girlfriends in college, "I don't drink juice unless there's champagne in it." Now, I've created a juice so delicious that it tastes better than a mimosa! I swear. If you don't have a juicer, and you live near, I'll make it for you and I promise it'll open your eyes.

My hijacked recipe.....
Better Than A Mimosa (serves two)
10 Carrots
1 Granny Smith Apple
1 Inch of Ginger

I'm excited to play around with my other ingredients. Juicing is so much fun! Dan doesn't seem to be quite as excited. He's more of a meat and potato kind of fella. He's a great sport, always allowing me to shove all sorts of concoctions and recipes down his throat, never complaining, but I know he needs more substance. I'll let you know how things turn out with the other juices. I think I'm going to make a dinner drink too...poor Danny.

Also, on another note. I was thinking about it last night, as I was trying to fall asleep, I'm sorry if I'm annoying. Sometimes I wonder if I sound too cheesy. Or I wonder if it sounds like I'm bragging about how wonderful my life is. My only hope, if that's how I sound, is that you feel the same way about your life. I've gone through a real gamut (engagement, calling off a wedding, marriage, divorce, getting fat, losing weight, etc), and I probably sound completely nuts, but this is the best part of my life so far. Undeniably, I am incredibly fortunate to have such a wonderful husband, kind family, overflowing network of fabulous friends, and those things along with my happy disposition (which has not always been the case) have catapulted me into a position where I believe I have the best life I could possibly imagine. Life is perfect, elephant in the room not included. Life is quite complicated, but the things that truly make me happy are very simple. It's been a great lesson for me to learn.

Turtles Are Back!

As you can see in the photo attached, my favorite neighbors, the Green Lake turtles, are back. There's a specific log where they love to sunbathe. Each time I run the lake, I always look for signs of my green buddies. It's been months and months since they've shown their adorable faces. What a great omen! I've heard before that turtles symbolize longevity.

As Dan and I jogged the lake in the beautiful sunshine, we laughed and watched everyone stop, and pull out their phones to take photos of the turtles. We hugged and reminded ourselves how lucky we are. Life is truly good! Even though we can't help but be nervous about the MRI, we still recognize how healthy I am and what a wonderful life we live.

I remind myself, often, that this stage in my life is definitely going to be the easiest. My only problem in life is brain cancer. Someday I'll have the stress of working, parenting, and everything that comes with adulthood. For now, I just need to be healthy, find happiness in things around me, enjoy laughter with loved ones, and breathe deeply, inhaling the beauty of life. It's all so simple. Someday, soon hopefully, life won't be all about me and my needs and my survival. I can't wait to worry about the pitter-patter of little feet, or a career. That will be fun!

Insult to Injury

My reindeer pajamas

Too much fun for Jess this weekend. I awoke with a temperature of 102. To add insult to injury, I received an email this morning from the Bone Marrow Donor Program of Puget Sound stating that I am unfit (my word, not theirs) for donation and will be placed on reserve for a year pending a clean bill of health. Ouch. They don't want my blood, platelets, red cells or my marrow. That's rough. I understand, since I technically have cancer, but it still sucks. It has always been a dream of mine that one day I would get a phone call and be able to save someones life. I figured, I already had what other people are dying to get (literally), healthy tissues and blood - why not share, but now I'm unable to help. If you're so inclined to stand in my place, please sign up to be a donor (link for Seattle area). 

Macular Degeneration

Sorry the above photo is so grainy, but I didn't want to disturb the sleeping birdies so I zoomed in. If you look closely the female has her eye open and she's watching me, probably deciding if I was a threat. I wish I could swivel my head and tuck my face into my feathery back. It seems very comforting, hiding from the world. I think I would like being a duck at Green Lake. As far as I've been able to tell, it seems like a pretty awesome life. 

That picture was taken on my walk to the retirement home this morning. Tuesdays are my favorite! Today, along with my usual Margaret, I got the chance to paint Lucy's nails. She's 89, and such a sweet and interesting woman. She moved to Seattle in 1946, migrating from her small Minnesota hometown of 2,300 people. She reminded me of two of my favorite people Rich & Andre who moved from Minnesota. Unlike Lucy, they still have their awesome accents, well, at least Rich does :) Lucy moved to Seattle to do bookkeeping for Boeing during the war. I love Lucy and Margaret. I also had the chance to go to Ruth's room and touch up a couple of her nails. Ruth didn't have the energy to walk to our usual meeting place so I knelt down while she relaxed in her rocking lazy chair. She was looking classic in white slacks and an American flag sweater. These women always look so handsome.  

The highlight of my day, though, was when Lucy asked if I was attending high school. I started laughing and told the ladies that I'm 31. They couldn't believe it! They kept going on and on about how young I look, until Lucy finally fessed up and admitted she has macular degeneration. Then we all busted out with uncontrollable laughter. Oh lord, these women are so funny! Seriously. They're such a treat!

Sniffle...I'm Jessica

Yesterday was awesome! Until I fell.

So, yesterday, I had another doctor appointment. After looking at a map, I decided that since the office was only three miles away, and my luck with buses hasn't been that great, I would run to my appointment.

Everything was going smoothly, my little MP3 player was all loaded up and plugged in my ears. I also had my new phone with a mapping system to show me the way.

Under I5 - Green Lake

As I was running I kept recognizing the beauty all around Seattle. The weather is so temperate, and gorgeous, even when it's gray. Seattle has the ability to sooth you. 

Ravenna Area?

The course taking me to the doctor was through neighborhoods that I've never seen. Such beautiful Tudor style homes, and fun, windy little streets. Quiet little places. 

Capturing My Love Affair With Moss

I was minding my business, according to the map on my phone I was less than a few blocks away, when my left leg gave out on me and I collapsed. I hit the ground with my left knee, then my left hip, and my left elbow, while my left shoulder made a crack. My right hand tried to help brace me, but it was practically an afterthought. Worst of all, my new phone that Danny had so graciously gifted me, was shattered.

My adrenalin was through the roof, and I felt completely confused, was I having a seizure?!? I stood up, and leaned against a concrete wall trying to get my vision back on track. Everything looked overexposed, and I couldn't tell if the ground was solid. It was weird. Right then, my phone rang and it was Jessaca - perfect timing. I sort of talk/sobbed and told her what happened, being a mother I think she wanted to come over and bandage me up and give me a cookie or something. Gotta love moms. I would have gladly let her baby me, I was pretty shaken up.

Fallen Soldier

Luckily, although the screen on my new phone is shattered, it still works! Phew. I knew I didn't deserve a super sweet phone, I'm too much of a klutz. I apologized over and over to Danny, but he didn't even care about the phone he was just glad I was okay. I'm still mad at myself though. Stupid feet! No that's not true, I love you feet, but seriously, did you not realize the cargo you were carrying?!?!

I waited at the doctor's office, and when the nurse brought me to the back room for my visit, I hobbled behind her. This was my first appointment with a possible new GP (one that my medical will cover). When he came into the room and said hello, I started crying like a middle schooler that just got teased in the lunch room. Awkward! His eyes got really big and he brought over a tissue and asked what was wrong. I told him, "I had been having problems figuring out the buses....baby sob....so I decided to run to my appointment...second sob...and just a few blocks back...sob again...my left leg gave out...sob...and I fell. I'm sorry....sniffle....I'm Jessica....it's nice to meet you."