3.14.2013

Repenting

I was a very bad girl. I walked to PCC yesterday in the mist with Emma, we were on a hunt for healthy snacks, and a few regular groceries to keep the house running smoothly. As I was walking up and down the isle, I spotted a deal on LÄRABARS...my favorite plant based sweet treat. (I think the main ingredient is prunes.) Do you remember me mentioning my weakness for delicious things? That I have no self control? Well, I've been so good lately, and I really thought I could handle it, so I bought six bars for Dan's lunches. Dan has a sweet tooth like me, so I was trying to tempt him toward a healthy snack and away from peanut butter cups. Anyway, Emma and I walked home happily, as I sipped on MY treat, multi-green kombucha (I swear it's delicious).

When I made my way to the kitchen and unpacked the bags, I put the bars into Dan's snack area, but within a few hours I could hear Lara, telling me how delicious her bars are. I ATE THREE OF THEM. Back to back. In my defense, they're small. But still! That's what I mean about not being trustworthy. It's embarrassing. When Dan got home from class I had to tell him what I did, and beg him to put the rest of the bars in his lunch bag. I can not be trusted. I have no self control. God they were good though :) Yummy!

I repented with a fresh kale juice this morning though. I guess that's something :)
(I would include the recipe, but it should never be repeated. I drank it though. Because I was a bad girl.)






By the way, how did I not remember that kale is from the brassica family? So great to fight brain cancer! I'm slacking. I was Googling the benefits of kale juice and was reminded (I usually add it to my smoothies in the morning too). Anyway, all in all, I'm not freaking out about the coconut cream pie, chocolate chip cookie dough, or chocolate coconut chew it was so delicious, soooooo good. That's the worst thing I've eaten in two weeks. Not bad. But still, I am reminded, I can't have it in the house. I'll be relishing the flavor of those three bars for awhile though. Fond memories :)

3.13.2013

Lemons of Love

In one week I get my third shot. Holy cow, this is happening fast!! Only five more shots this year :) I wish I felt better and could actually enjoy the amazingness that is NYC. There's so much to do and see - and people to visit. I learned a lot though, about pushing myself. My buddy Libbey is coming with me this time, and we're planning on lazing around in the hotel room, relaxing, working on a puzzle and she doesn't know it, but I'm bringing my board game of Words With Friends. Slumber party! Packing should be easy...PJs and slippers.  I'm excited! We will have a blast, but at the same time I'm frustrated that I have to be careful. I hate that I'm prone to seizures, and that they're induced by stress. Stupid stress.

Doorbell.....


Look what my mother-in-law sent me!!! Wooo hooooo! Organic lemons!! Sweeeeeeet. I wish I lived next door so I could make her lemon shots just to see her face :) If you know Linda, you would be laughing right now, just picturing her laughing at me. Her giggle is fantastically contagious. And she'll eat whatever I make her, but let's just say it's not her favorite food :)

I am so excited for these shots, even though they're taxing on my body. I can't believe I'm able to do this. What a crazy opportunity. I can't say this enough, thank you for the donations! We have also been very fortunate that Dan's work is incredibly busy. He has been working 72 hour weeks, and will continue to do so until at least June. Above his 72 hour work week, he also travels for class once a week after work, and doesn't make it home until around 10:00 p.m. Danny works so, so hard, and I appreciate him very much - and I want everyone to know how amazing he is (as if you didn't already know) :) I worry about his health, though, a lot. He is so wonderful, never complaining, and I've been cooking, and cleaning and doing everything that I can to support him, but it sucks to not only not have a job to contribute, but also be the financial burden. STUPID CANCER! Ugh.

3.12.2013

Chicken Broth

I did end up making broth from the chicken bones on Saturday. It was so easy! I took the whole carcass and put it in a great big pot, along with the drippings from the roast.

See what I meant about all that meat?

You cover the carcass with water and boil it.

This is the carcass after just having added water

Some websites say 1.5 hours, others say 3 hours. I decided to go with 3.5 hours of boiling, and I'm telling you it was the easiest thing to clean the meat off the bones. They didn't say either way, the sites that I referenced, but I covered my broth as it boiled.

You know it's ready when it's a milky color

I used a slatted spoon to pull the bones out of the pot. I placed all the meat on one dish (really sift through it - there are some very small bones), and the bones/cartilage/skin in another. When I got to the point where there was stuff floating around, I placed a mesh strainer over another large pot and strained the rest of the broth. Done! I ended up with about two cups of meat, it was crazy!

That's a lot of broth & a lot of meat

I divided the broth into one pot for dinner with the remaining chicken, and the second half, I placed in a container to freeze. You will want to season the broth with whatever you'd like, whenever you use it, but it's all so easy! I tossed some things from my fridge, a celery heart & leaves, some kale, shiitake mushrooms, chives, carrots, cayenne & fresh cracked pepper and a dash or two of finely ground sea salt. Done.

I'm sorry to say I don't have any vegan cookie recipes. I haven't baked in ages. I don't trust myself around sugar - unless it's as an exfoliant. Just thinking about it makes me want a cookie, though. Yum!! I'm such a suggestible person when it comes to food. That's why we don't have anything deliciously naughty in our home. Veggies, meats, nuts and cheese get old very quickly. Can't really binge on those things :)

My favorite part of making chicken broth.....

I'll never tell what I wished for...



3.09.2013

Roasted Chicken Recipe

I've been nesting these past few days, cooking up a storm and ferociously cleaning. It's no surprise, really, the sun has been poking out lately and the sun is rising at 6:00 am - for me, the amount of sunlight during the day is directly related to energy levels :) The good thing about Seattle, is that we see the sun and immediately get to doing something. The sun is like an 'on' button. It's also driving me crazy, causing a deep itch to plant my dahlia tubers - I won't, I know it's waaaay too soon, but man, this is a serious challenge in patience.

I have another fun recipe, it's my take on a roasted chicken. It's crazy easy, too. Only five ingredients.

I need to mention, although I don't state it each time (although I probably should) we only purchase grass fed free range organic meat (everything - beef, chicken, lamb, etc.), buying from farms/butchers that we know of and trust. We can't control every piece of meat that we put in our mouths, like eating at a friend's house or something, but as for our household, I figure the price is worth the value. Animals are naturally supposed to eat grass, not corn. Animals that eat grass are much higher in omega-3 fats instead of the corn fed which are high in omega-6. It's just a personal preference, not only for the nutritional properties, but also for humane reasons. I've mentioned this before, but I want to eat happy, healthy animals that have had fun in the fields before they came to my kitchen. Maybe it's morbid, but I like to think that it's supportive to their lifestyle. As far as livestock, those guys are the lucky ones. I guess I didn't really need to mention the whole thing, but if it makes even one person consider a switch, I'd be pretty excited. :)

So, onto the recipe......

Jess's Lemon Garlic Pesto Roasted Chicken

Ingredients:
1 whole chicken
1 large lemon
3 tbsp fresh ground dried garlic (pure is best - no salt)
2 tbsp fresh ground pepper
4 tbsp pesto


1. Preheat the oven to 375 degrees. Remove the innards of the chicken. (Some people cook them up for their dog. I didn't. I didn't want to risk any 'accidents' if you know what I mean.) Rinse the whole chicken, and cut any loose hanging skin around the hole (I don't know what to call that area). Cut the lemon in half. Mix the garlic powder and ground pepper in a small dish.



2. Place the two halves of the lemon inside the, um, 'cavity'? I wanted to say bum, but cavity is probably more appropriate ;)



3. Take a tablespoon of pesto and spread it under the skin of one breast, then do the same thing to the other breast. Use the remaining two tablespoons of pesto and spread it all over the chicken (top, and legs - don't get too low on the sides or it will just drip off while cooking).



4. Shake/sprinkle/spread the garlic and pepper seasoning all over the chicken. Cover the chicken with aluminum, making a tent so that the two don't touch. I move the oven rack down one wrung, so it's just below the middle, then place the little bird into the heated oven. Cook it covered in the 375 degree heat for 80 minutes. Then remove the aluminum foil and put the chicken back in the oven for 20 more minutes - that makes the skin crunchy.



5. Eat. Yummy!!!

I'm not great at cleaning the meat off of bones, but for the first time I don't have to feel bad about it because I'm making my own broth with the bones and drippings. We'll see how it goes :) I'm excited to have a homemade broth to keep in the freezer for an easy dinner in a pinch - just toss in some veggies at the last minute. My own broth? Who am I turning into? An adult? Jeez.

One more thing. You might notice that I didn't include any butter, olive oil, or salt. I promise, you won't even notice. If you have fresh ground garlic (We're lucky because we have a huge organic bulk section at PCC.), the flavor is so delicious and flavorful, you won't miss the salt.







3.08.2013

Updated Green Smoothie

I am finally perfecting my green drink. It's so good, tasting pretty leafy, but it's like drinking two large salads. THAT's pretty convenient! :) I really recommend purchasing a Vitamix (if you don't already have one). Ok....here we go....

1 peeled banana (as ripe as you like it - the greener the less the sweet)
2 large handfuls of spinach (stuff it down in there)
2 large handfuls of kale (deveined)
2/3 of a pint glass of water

Blend until everything is liquid.


Add 1 tablespoon of chia seeds (full of protein, omega-3 fats, alpha lipoic acid, fiber and much much more, but for the best absorption into the body it needs to be ground...hence the Vitamix) to the blender (pour into the middle and away from the side and you won't have to scrape the sides as much) and blend everything until you can't see any shells.

 
Pour the mixture into a large glass and add one tablespoon of lemon flavored fish oil to your glass and stir with a spoon. (There is also orange flavored fish oil which is a delicious substitute if you don't prefer lemon.) Now it's ready to drink. Personally, I chug the drink right in front of the sink then immediately wash my glass, the utensils, and the blender. This is not a concoction that should sit in dishes/blenders. When I make the same drink for Dan I add 1/2 a cup of plain yogurt and an extra banana (and I stuff a little extra kale to compensate).

I love juicing veggies, but blended drinks are my favorite because they include all of the fiber which keeps me full for hours. The juicing is delicious but I feel bad wasting so much of the plant. I've fallen in love with a new shot, though, and it's best juiced. You juice a few fresh lemons, a bit of ginger, and once it's been poured into a small glass (like a shot glass or equivalent), tap some cayenne pepper on top. I have started craving my lemon ginger shot like crazy these days. I'm going to need to find bulk organic lemons soon.

Yellow flags of Spring are popping up all over :) Yay!!

3.04.2013

Service With a Smile & a Hug


This is such a cute story! Thanks mom, for sending it. Definitely a day brightener.

No Fear No Sidelines

Yesterday was Dan's 35th birthday. We woke up to a gorgeous sunny spring day, almost as if the day was meant for him :) I quickly got to chopping veggies and food processing my super special spicy spinach and basil humus. I packed our fruits, and veggies, our picnic basket and blanket, and peeled Dan off the couch - no time for killing zombies. We grabbed our folding camp chairs and Emma and we were off to Golden Gardens.

It was hot by Seattle standards. People, birds, dogs and squirrels were playing, lounging, laughing, and soaking up as much vitamin D as we could manage. To feel the sun on my face was truly glorious! There are weeks at a time (or longer) that we don't get that pleasure. My cold, cold bones were giddy.

Thank you for the picnic basket Meghan & Sean!

Thanks for the blanket Mary & Kevin!

We were doing great until the massive grey cloud started creeping in...

We only lasted about 30 minutes before the first raindrops started. We packed up, headed home and enlisted Eric & Laura to celebrate an indoor picnic on the couch. We turned Skyfall into a five hour movie, it was hilarious and perfect. 

It was nice visiting with friends that we've known for so long. There's no need for pomp. In fact you don't even need jeans, just sweats :) After the movie as we were catching up, Laura shared a story about a friend from high school, a teammate from volleyball, who had epilepsy. Apparently, she would sometimes seize in the middle of games. I was blown away! I have been living in fear of seizures. It was as if a seizure was the end of my world as I know it. After this last seizure, I had been feeling like my soul is trapped in an unreliable, faulty physical body. I've been very sad, wondering if my life will be boring, if I will be relegated to second rate sleepy activities. I was not born to sit. I was not born to live in fear. Hearing from Laura that when her teammate had a seizure it wasn't that big of a deal, that they all knew what to do, how to handle it, and that it didn't mean that she had to sit on the sidelines, literally sparked a flame in my heart. I physically sat up straight, started smiling, and felt like those 10 pesky pounds had evaporated from my frame. I mean, think about it - who wants to live on the sidelines? What's the fun in that? I want to be out kicking ass with the team! When people have seizures, almost none of them need medical help (unless there is a rare accident or special circumstance). I've had medical attention for my first one because I was driving and I didn't understand what had happened. Then the second time, again, I was confused. We now know exactly what to do.

Last Monday night when I had my seizure, Dan gently woke me up and told me what happened. Then I rolled over and went back to bed. What I need from my friends is to not be afraid. And, if you are afraid, that is okay, but just talk to me and I'll make sure you won't have to be alone with me. I am very careful to not push my limits, but this is not an exact science - there is so much that we don't know about what causes seizures. You can do everything and still be surprised with an episode.

I do not want to make my friends uncomfortable, but I also do not want to sit at home. I want to live. After this last week when my girlfriend suggested I should stay home from the run and pub crawl, then I had a seizure, I wondered if my physical state was deteriorating. I worried that my good days might behind me, that things would decline with further seizures. I was terrified that my life was going to be riddled with exhaustion and less and less invites from friends. A double whammy. Laura's story perked me right up! All I need to hear is that one person persevered, then I'm inspired and I want to join them in conquering the world!

It's nice to have a new perspective on the same situation. I can't tell you enough how relieved I feel. Even though I'm not drinking coffee, or alcohol - or eating sweets (other than fruit & 70%+ dark chocolate) - I still want to see my friends. I can still hang out at a bar for an hour, or meet up for desert, and I'll have a tea or a sparkling water, then I'll go home and rest. I believe I can have the best of both worlds.



3.02.2013

Date Night

There's nothing like a little fresh air to soothe the spirit :)

3.01.2013

Down Then Up

Ok, better news, Dr Liau pulled my MRI for a second review after I had my seizure (she just emailed again to clarify). She believes there is just a very, very small change in the tumor resection area, and it could be due to the Newcastle Disease virus shot which I received 11 days before my MRI.

Danny and I are using this as a wake up call. We're taking time to rest, and revamp our diet to really focus on low inflammation foods (feel free to post any yummy recipes!). I'm also trying to integrate as many low inflammation supplements throughout the day as well.

We feel very relieved, but nervous too. Living with brain cancer is stressful. One day you're just trying to live your life, and have fun with your friends, the next you're faced with radiation and everything that entails. Each time they look at my brain I worry, and lately, I haven't been feeling great anyway.

I need to stop trying to be social, and just focus on healing. It's hard though, I never want to miss out. But when dealing with cancer, you don't get to do what you want or live like you want. You just have to be happy living.

Below is a picture of a local raccoon that walked with my dad, Emma and I down to Green Lake a couple of days ago. We're pretty sure he was deaf and blind....and I'm positive he's adorable.

Bigger Fish To Fry

We got the MRI results from UCLA's tumor board. At first we received a phone call from Dr Liau's office stating everything looks great and we won't need to get an MRI for 6 months. Then we got a personal email 10 minutes later from Dr Liau with the bad news. There is increased T2 Flair, and an area of concern. They want me to do an MRI in two months and if the results aren't positive they will recommend radiation. If I have any more seizures I am to see a neuro-oncologist and begin anti-seizure medication.

I'm not sure how the wires got crossed, but don't really care either way, it doesn't change the truth. Today was a complete roller coaster and it's only 3:19 pm.

2.27.2013

No Business

Thank you for the encouragement. I am so incredibly disappointed that I had another seizure. And, I absolutely agree that my friends were just worried about me. It makes me sad though, that my friends are concerned, that they think it is a bad idea for me to join them in any situation - not that they're wrong, but it sucks. It hurts deeply. I know that wasn't the intention, but it was definitely a reality check. I don't want to just sit on couches, drink tea and visit. I don't want to be stuck in small groups. I don't always want to play it safe all the time, I want to live my life. It is very hard to have to hold back, to not participate - even if it's what's best for me.

"Liability" was my word, not my friend's, but that's how it made me feel. My friends care very deeply for me, and they addressed the issue out of pure concern, but it is pretty awful to have people think you can't do something - or at least deeply question your ability. Not everyone is going to be invited to everything, we're not all going to get participation medals. Life slapped me in the face on this one, though. It was a direct comparison to what I used to be able to do, and what now I can do no longer. It makes me feel weak. It makes me feel like I'm slipping away.

None of this was the intention of my buddies, but this cancer is a wicked, evil thing that knows no boundaries. I don't blame them for their concern, in fact I LOVE them for it, they only want what is best for me. Both sides are complicated. Ultimately, I don't have any business engaging in a pub crawl. I want to engage, though, to be included and have the option.

Either way, it certainly isn't the end of the world. Wires get crossed, intentions become misconstrued. This was a great lesson for me, to just allow some of the party to pass me by. They are great friends, and are always willing to meet up for more subtle, intimate get-togethers. I just need to focus on those, and put my expectations lower. I don't need to party, party, party. I have to do what's best for me, and I think that was what my girl friends were trying to do.

2.26.2013

Another Seizure

Last night, around 11:00 pm, Danny gently woke me up. Apparently he noticed my body jerking, my arms stiff along my body. My fists were clenched and my mouth was foaming. I don't remember any of it, but after i woke I was completely confused and my head felt like it was exploding.

Danny is going to email Dr Liau to keep her informed. Hopefully she will also finally give us the results from January's MRI. The delay is because UW didn't send the MRI disk to LA until weeks after the scan. I have been constantly checking in with them, and UCLA. It has been frustrating, and I'm so grateful that I have a low stage tumor, a glioblastoma fighter would not be able to be so liberal with their time.

After discussing possible causes of the seizure, Dan and I came up with a myriad of reasons...

1. I'm stressed because I still have not gotten the results from my January MRI.

2. My body is still recovering from the brain surgery.

3. In just over a month I have flown to Germany and New York. Jet-lag is very hard on your body, especially when dealing with an illness.

4. Danny is working 12 hour days, 6 days a week. Our schedules are all messed up.

5. Girlfriends of mine are hosting an annual trail run, then they do a huge pub crawl. I had been planning on joining them, but they decided (after talking privately) that they didn't think I should come. I was only planning on going for the run, then visit for an hour or two, then my dad would come pick me up. I know I can't do it all, but I still want to see my friends. Hearing that my friends didn't think it was a good idea for me to join them was incredibly painful. The truth, in their minds, is that I am a liability. What people don't know, is that 90% of the time I pass on invites to get out and socialize for just that reason. By my girlfriends basically disinviting me, it conjured up deep rooted feelings of insecurity. I always worry that something might happen, that I might become too tired in a given situation, or that heaven forbid I have a seizure. I understand that my limitations cause me to not be the best candidate for social situations. I don't blame them though, for how they feel. That's the hardest part with your closest friends, you wish that they would want you around no matter what. That they would love to spend time with you, that they don't only want to be with you when it's convenient. My life isn't convenient. My life is unpredictable. And I never know how long my body will hold up. I should expect my friends to want me in all situations. I'm a lot of work. But it hurts. It just sucks.

I'm exhausted. It's time for a nap. My life continues to change - drastically in the past 24 hours. All I have is this present moment, and I have no idea what will become of me.

Ultimately, one could say they were right to disinvite me, judging by last night's events, but does that mean I'm supposed to just stay at home for the rest of my life? Or remain on couches. Play it safe and miss out on fun social situations? I don't have the answer, but I do know that I'm not interested in fighting to be with my friends if they don't have faith that I can conquer things. My dad offered to ride his bike as I jogged for the trail run, but it's not fun to try and include yourself when people are on the fence.

2.22.2013

Capable

There are a lot of vices that I could choose when I feel sad about my diagnosis, about my limitations. And at times in my life, in other situations, I have made destructive decisions - and still do, I guess, in very minor ways (a candy, or "extra" wine).

I can not do everything I used to do. Yes, that makes me sad. There is no way around that disappointment. But, what I can do is find my strengths. When I am feeling less than, or inferior, to my old self, I am the only one who can fix it. Wine, sweets, sourdough bread, prettier hair, less wrinkles, nothing is going to make me feel better than feeling CAPABLE.

I just ran 7.6 miles at an 8.9 minute mile I can't do everything, but I am still strong. I am still evolving, healing, and persevering. I am happy to be moving forward. And, ultimately, that's really all I can ask for :)

2008 vs 2012

I got stuck looking at old photos yesterday. It is bitter sweet looking at pre diagnosis Jess. I remember being so hard on myself. I was never satisfied with my appearance. I constantly listened to that mean little voice in my head - you know the one - the one that says things like, "Hey saddlebags, you look like a heifer in these jeans. No seriously. Your muffin top is massive. I feel sick looking at you. You're making me want to vomit." That little voice is a total ass! I'm still hard on myself, yet, oddly, I'm at a lower starting point than before. Now, I wish I had what I used to disregard. What I used to abuse and disrespect. That's a tough pill to swallow.

After surviving the brain surgeries, the heavy medications, the rehab, I think I have a slightly better perspective, and can focus on more important issues other than looks. It's not the end-all, the number one judgement, of how I value myself. The definition of health, for me, has directly changed because of this brain tumor. No more diet cokes, no more artificial sweeteners, no five hour energy drinks, no more diet pills, no diet tricks, no diet shortcuts, no starving myself to lose a pound, no more occasional cigarettes (an old college trick which I have not indulged in for several years). I may not be pretty in the way I prefer, but I'm prettier on the inside and that's something. Here is one of the photos that I found yesterday. The girl in that photo is gone. Now, I look more like the woman in the second photo. I really hate to look in the mirror. I barely ever take self portraits - or if I do, I cringe. I wish I wouldn't have been so hard on myself. (As I write this I feel like history is repeating itself...perhaps I need to be more gentle about my appearance. There is a chance I may look back at this point in my life and wish that I even looked that good. It depends on if the cancer continues to progress.) From the time I was little, my grandma would tell me, "I used to think I was fat. Now I wish I had that body." I'm learning some hard lessons early. It's good for me though. 

November 2008
October 2012
Although the photo on the beach was relatively recent, I know that it's not exactly what I look like now. But when I look in the mirror, THIS is the image that I see, and it's very sad to me. I've gone through some very painful experiences, and sometimes I wish I could just flash back to ignorant, fun loving, vivacious 2008 Jessica. I've seen too much though, done too much, to feel carefree. I doubt I will ever be able to feel that way again.

There's only one thing I can do....it involves Emma, running shoes, my raincoat and my TCU alumni hat. It's time to brave the wind gusts and sheet rain. At least I have that. And that IS something.

2.20.2013

Training

I just finished my longest run thus far, 6.2 miles. I felt like I was jogging at a nice easy pace, then when I checked my timer at the end it turned out my pace was 8.7 an minute mile. Sweet! I'm not trying to run fast, I just want to keep a nice and steady pace. My only goal is to jog as much as my body feels fit. If I need to walk, I will, but there's a difference between having my body be tired or hitting a mental wall. I figure as long as I can talk with Emma as we jog, or I can sing under my breath, I'm at a good pace. To be honest, I thought I was running at a 10 minute mile. Obviously, I was incredibly surprised. Very happily surprised :)

Emma loves my running. We make a great pair :) Kisses for meeee


2.18.2013

Soliciting Laughter

Sorry for the meltdown the other day. I'm better :) Yesterday afternoon Dan and I got a nice five mile jog in. Running always makes me feel better. There's something about being outside, about feeling the burn in my quads, of the splats of Seattle mud on the back of my calves, that makes me feel accomplished, and connected. It makes me happy, and feel deeply alive.

Today is the five month anniversary of my brain surgery. Can you believe how quickly time has flown by? I can't.

Even with the occasional threat of a seizure, I feel like I'm persevering - and thriving. I have bouts of frustration (to be expected), but just as quickly as they come - they go. It's so hard to not freak out, to not over analyze things - diet, toxins, chemicals, etc. At times, it seems like everything is out there to kill me. But that's no way to live! It's too stressful. Instead of constantly researching things to avoid, I'm going to take some time to only check out novels from the library. I'm banning non-fiction for a bit :)

As soon as I'm back running, I get things back in perspective. I am incredibly healthy, and very, very fortunate to be constantly progressing and healing. Just months ago I was under anesthesia. My brain was being explored - "cleaned" - if you will. My right hand and foot are still numb, but it's much better. I'm not sure if the sensation is coming back so much or if I'm just getting pretty awesome at compensating :) ...see...I'm feeling MUCH better. Either way, I don't care that much about the details, I'm just glad that I can put my earrings in, and clasp my bra. These are a few of the things that bring me great joy.

On another note, a very VERY sincere thank you for all of the donations to my medical account! We have paid for the clinic in Germany AND the shot in New York. Thank you for the help! I am so incredibly grateful, I can't even express my gratitude. I wish I could give each of you hugs. Just imagine you're getting a hug, please :)

Also, if you haven't heard, there is a man who has been attacking women around Green Lake. Please be careful! The article I read said the attack was along Wallingford Ave N and E Green Lake Dr. A man came out of the bushes and jumped on the woman. She screamed and a male bicyclist chased the attacker away. It happened around 6:30 a.m. Maybe don't run alone? Or avoid running in the dark? Perhaps take mace? Just wanted to throw that out there.

Back to the anniversary, cheers to another five months! In honor of today, please either tickle someone or hide behind a corner and surprise someone (preferably someone you know). Today is all about soliciting laughter :)

2.16.2013

Oops

I napped most of yesterday, trying to get back on my feet. I thought that resting for a day and getting a good night's sleep would be enough. So, this morning Dan and I went out for our 6 mile run. Half a mile into it I started to get dizzy, and nauseous. My body is so off. I can't even explain it. If you remember, when I had my first seizure, the grand mal, I was driving alone on a highway, cruising at about 60 miles per hour, weaving along a ledge above the Wenatchee river west of Leavenworth. I had a weird sensation, a minute change in vision, like everything was slightly over exposed. I became nauseous, and dizzy, and although I had no way to know what was about to happen, I pulled over. As I put the car into park my body began convulsing, my eyes rolled up and the last thing I saw was the ceiling.

I have no idea how I knew to pull over. None of the things were so severe that I was scared, it was just an odd feeling, an indescribable sensation. From time to time I get these premonitions and they're scary. I never want to freak out, and it's important that I know how to keep myself safe. So far I have been able to avoid any other grand mal seizures, but they still have a hold on my life. I still have to be really careful. When my body alerts me, I take it very seriously.

I never want to have another seizure ever again, if that's possible. Flash back to this morning, Dan ran into Dukes at Greenlake to get me ice water. I chugged it (ice water is what it takes to immediately calm my over active brain - along with lorazepam), we sat for awhile, then walked home to rest.

I hate it that my body isn't as capable as others. I hate that I have limitations. I hate it that this makes me cry. I hate that my brain is working so hard, yet short circuits so easily. I hate it that I can't power through life with a coffee and tenacity. I feel so frustrated and sad. I'm lucky to be here. I'm so grateful to be alive. And I MEAN that. Deeply. But I'm also frustrated.

I probably won't be emailing or texting for a bit. I need to just gather my wits.

And mom and dad, please don't panic. I'm just venting. Seriously. And I need rest. I love you all.

And thank you Christel. You are amazing. And I am so grateful to you.

2.15.2013

Home

I'm home, and exhausted. Yesterday, we had to check out at 1:00pm and our car to the airport was at 4:00pm. My body was exhausted, and I thought that taking a walk, drinking a fresh pressed green juice, then visiting at a Starbucks with Christel to pass time would be a great way to kill time.

Unfortunately mid conversation, I felt a massive wave of nausea and experienced vertigo. It was the feeling of an aura. I ripped off my scarf and ran for the door, needing cool fresh air. Christel immediately ran and got ice water which I chugged and placed a lorazepam under my tongue. I didn't know what to do. New York is amazing, but there's not a place on the entire island of Manhattan where you're alone, and it's quiet.

Christel and I slowly walked the half block back to the hotel where I laid down in the lobby of the hotel, put my noise canceling headphones on, and closed my eyes. Christel ran around getting things to help, she kept refilling my ice water (at least two liters), she grabbed some food, that I couldn't eat. I was just trying to limit the stimulation. My brain was frazzled, frying. We almost cancelled the flight and just stayed one more night, but I wanted to get home. I was going in and out of nausea and sickness, along with confusion, and I didn't want to push it, but I needed to get home and climb into my safe place, my cocoon.

Ultimately, Christel contacted Delta and when we arrived at JFK we had a wheelchair waiting. I closed my eyes and just tried to avoid all of the chaos of the airport. Once on the flight we hunkered in, covering me with blankets and christel's puffy jacket. There were a couple of touch and go moments, but I just popped another lorazepam, closed my eyes, and mentally sang a lullaby. I know it's cheesy, but the lullaby hopped into my head, and it calmed me down. It removed all the thoughts swirling in my mind, quieted my fears, and completely distracted me. It was exactly what I needed.

I have stress induced seizures. That's why quiet is so important. I always need a safe place to go, where it's dark, quiet and cool because I just never know when my mind will short circuit. If I catch it in time it won't turn into a seizure, but it's very important that listen to my body.

Next time I have to checkout at 1:00 pm (they wouldn't let us remain in our room), I will just pay for another half day. When traveling, I need to spend a lot of time in bed. I need to avoid stimulus, especially just before a long cross continental flight. I'm still learning my boundaries.

As for the shot, it was no big deal. I did not get sick. It was wonderful seeing Dr Germany again, and of course Dr NYC. It was kind of embarrassing because when I walked into the office, Dr NYC said, "The girls in the office found your blog (with a grin) thank you for all the kind words!" I immediately turned bright red. I never really remember what I write, I just put down my experiences and feelings.

So the piece of bad news that I am very sad to report is that the treatments in NYC have doubled due to our government imposing insane taxes. Because I went to Dr NYC last fall, I qualify as an existing client, however for those who met with him after January 1, 2013, the prices are dramatically increased. I'm so sorry to those who are watching my case, and deciding from my results. I don't understand why our government would cause the current cost of the shot ($4,200 Euro) to DOUBLE ($8,400 Euro) because of an imposed tax. Obviously the government doesn't find the shots to be dangerous or they would ban them. Instead, it implies that only the wealthy should get access to the best immunotherapy in the United States. It's disgusting, and frustrating. And it makes me feel so helpless. It makes me so disappointed in my country.

I am able to get my shots in the United States under "Compassionate Care." An attorney drafted the legal documents and that costed $500. Now, the documents, drafting, and legal right to undergo the shot therapy in the US is $5000. This is insane! Why does our government want us to die?

Ok. Time to rest. It has been a long week.

I love you all.
J



2.14.2013

Happy Valentine's Day...

...from NYC :)

Will post about the trip soon.



2.12.2013

NYC - 2nd Shot

Christel and I are relaxing in our spacious, upgraded, room. (How does this keep happening to me?) We even had my friends from NYC send a town car to pick us up at the airport. Thank you Steph & John!!

We are enjoying ourselves, lounging on our beds, pooped from laughing (no pun intended) after we barely survived the flight. We were pinned between a man in the seat in front of us with MAJOR flatulence, and the bathrooms which were directly behind us. I'm so glad THAT'S over :)

Time to relax. I'm so excited for my shot tomorrow!! Woo hooooo

2.07.2013

We're Giants!

Training

I have been eating like a horse lately. I can't seem to feel satiated. I'm hoping it's because I've jump started running again. (Previously, I had only been running twice a week - now it's four.) Hopefully my crazy cravings and absurd hunger will level out. :)

I am having so much fun training! It forces me out of the house for a run, even if it's dumping rain. Each day that I cross off my running calendar makes me feel so accomplished. I end up feeling invigorated. Thrilled. Ready to conquer the next hurdle. And tired, and sore, but in a good way! I haven't ran a half marathon since before I was diagnosed.

My first half marathon was in 2007, and I started training because I was quite overweight. Seriously. My fattest point (and I say "fat" because the extra weight was pure lard) was 182. I'm not even joking. I'm 5'6 3/4. I haven't had a weight problem since that point in my life, I've fluctuated, sure, but I will never get to that point again. After all of the surgeries I've always gained between 5-7 lbs, but although I keep tabs, I don't go crazy to keep a certain weight. I weigh myself every week or so, just to stay informed. I have the kind of body that disperses weight pretty evenly, so I can gain 10 or more lbs and still be in the same jean size. My clothes keep secrets quite well, so well that they don't even keep ME informed. Therefore, I am one of the scale lovers. Some people hate scales, and that's fine too, I figure we all have to find our own tricks.

Anyway, this half-marathon training is such a powerfully emotional and inspirational venture. It signifies that I'm capable, that I am strong. That I am in control of my body, and my mind. That I can stick to a schedule. That I'm one step closer to living a real life, closer to proving that I can hold a job, and most of all, that I am healthy.

Each time I look at my muddy running shoes and see the wear, or feel the ache in my muscles I feel proud. It's quite possibly one of the best feelings in the world.

Best breakfast in ages, oatmeal, ground flaxseed, frozen handpicked FH blackberries from my brother

2.04.2013

San Juan Island Marathon

I have exciting news...I just finished talking to Dan and after getting the green light, I have decided to train and attend the Kings Market San Juan Island half marathon on Sunday June 16th. I'm so excited!!!

I am so incredibly thrilled to have a new goal. I can't wait to match my longest run, only this time it will be 8 months after a brain surgery. Depending on the schedule of shots, I may have to get a shot in the days before or just after the race, I won't know for sure until May. Either way, if I'm tired, I figure I will walk if I don't feel well :)

I've already worked out the training schedule and I will be able to train during the day, during the week. This is going to be so fun!! I'm shifting the schedule so that my runs start on Monday and my long run is on Friday.

If anyone is interested in joining, I always love to see smiling faces. This is going to be a great accomplishment. And I can't wait to have it happen in my home town :)

I have this planned so that I can run in the morning then nap in the afternoon. I don't want to jinx myself, but it seems to be the perfect plan! Woooo hoooo!


1.31.2013

Cleaning Up The System

After the MRI Dan and I splurged with pizza and wine with family, it was delicious! The next morning I recognized the difference in how my body felt. So, to clean up my system, I've been eating a vegetable, and fruit diet. Lots of green drinks :) and lots of supplements :) and lots of water.

My system gets pretty upset when I eat bad food or drink alcohol. It's weird. My body used to love wine and bread and cheese, but now it's giving me attitude. I keep trying from time to time, but the verdict is pretty clear. Good thing I never give up! :)

As for the comments on the blog, unless you include your email address, I can not respond privately. At least, I don't know how to...sorry about that!

I still haven't heard back from Dr Liau about the MRI results. I'm not sure if she will email me or if it will come via hard mail from UCLA. Either way I feel pretty content with how life is going. I'd be lying if I didn't say I wasn't freaking out about $$$ for treatments (I'm not sure if I'm saying that correctly - I'm no good with double negatives anymore), but since you have all helped so much with the various fundraisers, we should be able to get through April or May, and soon after that we should have the various fruit seasons...hopefully Dan and I can do the fruit sales in West Seattle and Friday Harbor, perhaps even Green Lake. I'm really excited at the prospect. It will be fun to have a weekend job for a bit :) busy hands are definitely happy hands.

1.27.2013

MRI Pics

Here's a few pictures from Saturday's scan. You can see the tumor resection area in photos 2 & 3, the other two are just really cool, yet creepy images. Hope you find them as interesting as we do! There's a lot of inflammation from the surgery, that's clear, but there doesn't seem to be any obvious tumor tissue. From here I'm guessing the doctors use this as a baseline to compare each concurrent scan, watching for changes - nothing scary.

Dan are pretty happy with the images. It's amazing how inflamed my brain is, but it's only been three months, and after last surgery there was massive inflammation for almost a year. I'm taking a lot of anti-inflammatory supplements (for example boswellia), and focusing on eating lots of anti-inflammatory foods (veggies, fruits, omegas, lean protein, etc.).

I'm very excited to read the report from Dr Liau, I hope I'm not jumping the gun and that my confidence isn't in vain. There's no harm in being happy and positive. If I end up being wrong, oh well, there's always time for disappointment later :)

1.26.2013

Finished

I'm done with the MRI, and it wasn't bad. They scheduled me for a 30 minute scan. A baby by all standards. I still had to do the contrast dye (no biggie), but the sweet girl hit my vein on the first try. Yessss!! I had already fallen in love with her when she said, immediately upon meeting, "You look so young for your age!" As she glanced upon my chart and looked at my 32 years.

Anyway, Dan said I've been smiling non-stop (even though the official results won't be in our hands for a week or two) and I should take a picture. So here it is :)

I haven't been in many pictures lately. I like to avoid or if I do, I'm never pleased. I need to get over myself. Here goes nothing...

1.25.2013

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!

1.22.2013

Home

I'm back home, and have been recovering since Saturday afternoon. I'm still pooped, trying to get back to a normal schedule. Mostly, I sleep during the afternoon, wake up and wander around the house in the late evening, then sleep in the late morning. I've slept one amazing seven hour spurt, but the average has been five hour increments. It's not great. I'm incredibly grateful that I'm able to sleep as much as I can, whenever I can.

I was able to make the trip without any seizures, and I'm resting as much as humanly possible right now so that I won't have any problems in the near future. When I came back from Poland a year and a half ago, I didn't rest, pushed myself too hard, drank too much coffee, and endured my grand mal seizure. I will never be that frivolous again. Although I never want to miss out, I know my limitations :) I hate the reality of my condition, but I know that my body will win if I put up a fight. It's better to just relax, and roll with the punches.

Speaking of punches, this Saturday is my first MRI since being released from the hospital from surgery. Since my MRI scan and report are sent directly to Dr Liau, I'm able to have the appointment on a Saturday. How fun is that! Now Dan doesn't need to take time off of work. I'm excited to not have to meet with any UW doctors. I won't have to fight to avoid radiation. I won't be manhandled. It's such a relief! I'm still nervous for the results, but the tumor is something we have to monitor, so of all the scenarios, this one is the best.

Lets hope that the MRI shows a vacancy in Hermie's hood!


1.17.2013

6th Germany Update

Well, I just woke up from over 15 hours of sleep. Yesterday was my first immunotherapy shot primed with my dendritic cells. At one point, I woke from my nap while Green was getting ready to head down for dinner and she pointed out the beads of sweat all over my back and chest. Apparently the fever kicked in. Yes! Exactly what we wanted. I used the bathroom, and fell back into bed. I've been exhausted. You want to have a fever because it means that the virus is infecting the tumor cells that my body can now recognize as virus and my body creates a fever while cleaning up the bad cells. The tumor cells are considered an infection that must be attacked (by my dendritic cells) and removed. That's the thing about tumor cells, the are usually cleaned up by a healthy body before they turn into cancer. My body, for some reason, has not been recognizing Hermie as a freeloader.

The shots are very easy to endure just deep exhaustion, slight fever, and ache throughout the body. Easy stuff. (Easy now that I'm rested anyway.)

Before the shot, Green and I asked Dr Germany all of our questions. He is fantastic, always wanting to make sure that we understand everything. He's usually late, but it's because he's so thorough. We never minded. Our whole point for this trip was the treatments. I would have sat there all day, happily, if that's what it took.

After the shot yesterday, Green and I took a Dramamine (taxi rides are rough), and headed to Gottingen, where I cozily lay in bed. It's only 5:00 am, but that's about my wake up each morning. I've always been a morning person, but this is crazy! It has been nice, though, that every hotel had a breakfast included. I wait patiently for 6:30 am, then like a mouse (with a book under its' arm) I sneak out into the world. I enjoy my quiet time just like my dad.

We will rest this morning, then take the train in the early afternoon, headed to Frankfort. We'll spend the night at a hotel attached with the airport, that way in the morning we can just walk to the check-in.

I can't believe the trip is almost over. It was so fun! Even though I was asleep or in bed 75% of the time, I had a blast! I wish you all could meet Dr Germany. He is indescribably profoundly light years in front of cancer medicine in the US. The things he is doing are just amazing. On three occasions we spent time with Dr Germany. Each time the lasting effect was compounded. He is a serious scientist, amazing doctor, and a problem solver. I can't even explain it accurately. If you have cancer, you owe it to at least contact the clinic to see what your options would be for treatment. His clinic is incredibly successful with brain tumors and lung cancer (he cures many other types as well, but those two - which are known to be exceedingly hard to treat - are a huge part of his clients). It has to do with the way the shots process in your body. With one pump of the heart the immunotherapy was in my brain and I felt it. I felt it immediately during the first shot, then at the next appointment we asked how soon the immunotherapy shot took to reach my brain, and they said "one heartbeat." I had thought it was just me having positive thinking. :)

I'm very hopeful. It's known that this treatment is best right after resection when the tumor burden is low. That's because the best ratio of immunotherapy primed dendritic cells and tumor cells is 1:2 if your tumor gets too large, it's very hard (not impossible) to shrink it.

Thank you to everyone for the support, and the fundraisers!! Behind contacting and including Dr Liau into my care team, this is the most amazing thing I've ever done in my life. I can't believe where this tumor journey has taken me. I've been in the presence of, literally, world changers. Like I keep saying, I'm never going to give up. If there's a will, there's a way. And I'm going to find it.

1.15.2013

5th Germany Update

Just woke from a bad nightmare. I have such vivid dreams. Yesterday, when I arrived at my appointment, the nurse took one look at me and called Dr Germany. I tried to explain that I looked awful because I was reading a sad book (true story) and it made me cry (also true), but she wasn't having it and postponed my immunotherapy for later this morning.

I'm feeling much better after having a break. Now I just have the immunotherapy this morning at 9:30 am, then tomorrow I have the immunotherapy primed with my dendritic cells. Then I'm done. Until my reoccurring New York appointments, that is. I had more hyperthermia appointments scheduled, but I'm canceling them, obviously that treatment does not work well with my body. I had been so excited, but oh well.

Here's a photo of green and I last night when we wondered off for her birthday dinner. We were literally laughed at in our bright coral and yellow coats (by our bell boy) because 99.9% of Duderstadters wear black, brown, or gray coats - either puffy or real fur trench coats. Apparently we did not get the memo.

1.14.2013

Fourth Germany Update

So ever since my first hyperthermia on Friday, I've been experiencing an ongoing headache. I thought that maybe it was an effect of the immunotherapy shot. When we checked into the appointment yesterday for my next hyperthermia, I mentioned the headaches. The nurse gave a concerned look and called Dr Germany. One of the side effects of hyperthermia can be edema (swelling) and it looks like that's what I'm dealing with. They canceled my hyperthermia, but still gave me my immunotherapy shot. I've been feeling pretty off so Green walked me back to the hotel and we put me back to bed.

My body is exceedingly exhausted from all the travel, and all of the procedures. My sleep patterns are all messed up - in fact it's three in the morning. When I finish this post I will take two Advil PMs and see if I can knock myself out.

The headaches have been very bad, but I didn't really want to write about them and complain. I should be honest though so that people who may want to try these treatments can have my account and have all the information.

I have also been taking high doses of boswellic acid that Dr Germany prescribed. It's an anti-inflammatory. It's much more concentrated than I can get in the states. I stopped taking those pills yesterday afternoon as well. I'm trying to pinpoint exactly what's making me feel so sick. I keep having to remind myself that it hasn't even been three months since my brain surgery. I need to be careful and listen to my body. My body feels dangerously close to having a seizure, a feeling that has hovered lately in my cells. I feel bad for Green because I spend most of the days in bed. I've missed dinner at least three days because I was unwell, and sleeping. I'm really grateful that she's comfortable eating alone.

Ok. Time for me to pop some pills and try and get more sleep. Below is the bed that you do hyperthermia do, it's a waterbed, and that half bubble thing goes on your head. I was all ready to go yesterday. Oh well.

1.13.2013

3rd German Update

Below is a photo of the view off our room. After the first night in Duderstadt, we woke to a tile saw directly below us. When we stopped by the front desk on our way to the clinic for leukepheresis, we asked how long the construction would last and the sweet woman surprised us when we got back from the appointment with an upgraded room - a suite. Green and I have been treated so well, upgrades at every turn. We've decided it's because we're really giggly, and smiley, grateful and happy :)

I have another hyperthermia and oxygen treatment at 1:00 pm today, directly followed by another Newcastle disease virus shot. There will three of those all together, then a shot with the Newcastle disease virus primed with my dendritic cells. The Newcastle disease virus only attaches to neoplastic (tumor) cells. Your body recognizes the NDV on the coating (and sometimes inside the tumor cells) and your body cleans them up. The whole process is very interesting.

Most people get flu like symptoms from the shots, but so far I haven't had a fever - which would be ideal. That would mean that the tumor cells were becoming infected. I think that because my brain surgery was so recent, and my tumor burden is so low, the quantity of tumor cells in my body is very small so although they could still be getting infected they might not effect me very dramatically. That's my take on it anyway :) those poor little stragglers from the surgery are scrambling to live in my brain and they're running out of places to hide :)

I should be asleep right now, Green's sleeping as it's only 6 am. I've been up for an hour. I've been sleeping in the afternoons, waking and reading my book for an hour or two, then falling asleep, usually waking between 1:00 am and 5 am. I sleep as much as I can, but it's impossible to get on a schedule, I'm too jet lagged. I have a weird thing that if I get too tired I pass the point of no return. It takes several hours to get back on track, sometimes up to a whole day, it's awful. The good thing is that the treatments wear me out. After the leukepheresis I got 20 hours of sleep. After the first hyperthermia it was 3 + 13 hours. These treatments are exhausting on the body.

It's Monday morning at 6:06 am. I have my appointments today, then tomorrow at 4:00 pm hyperthermia with oxygen and a NDV shot. I have Wednesday off, then Thursday I have another hyperthermia with oxygen and my first NDV shot primed with dendritic cells. Green and I will then head in a taxi to Gottengen for the night. We will take the train the next day and stay at a Frankfort airport hotel. We fly out late morning on Saturday. It's going to be a big week.

Tomorrow is Green's 32nd birthday!! She is such an amazing friend to share it with me :) The Germans have a daily tradition of coffee and cake in the afternoons - even the retail shops close. We've been meaning to partake, I think it's time! :)

1.11.2013

2nd Germany Update

I forgot my converter for the computer, and it died. I've been limiting cell use because, without my computer I can't charge my phone. Oops! I will do updates when I get back. So far I've completed the leukepheresis, a hyperthermia with oxygen and a shot of the immunotherapy. I can't wait to explain everything! It's all so hopeful!! I keep thinking while they heat my head, or endure needles, that I'm one lucky girl to be able be here at Dr Germany's clinic. I read about it a couple of years ago and it seemed unattainable, but here I am. Once again I'm in the hands of a cutting edge doctor. A specialist in his field, one of the top experts in the world. Wow. And he giggles. A genius that smiles and loves what he does. I'm having so much fun!! It's a fabulous place to be :)

1.09.2013

Duderstadt

Green and I are waiting for Dr Germany. We just finished my blood draw, next Dr Germany will meet with me to discuss tomorrow's leukaphrenesis procedure, and review my other treatments. Duderstadt is unbelievably picturesque. Pictures do not even begin to do it justice.

We were able to visit with Jess Abu Dhabi yesterday which was wonderful. She joined us in Frankfurt and traveled to Gottengen with us. We immediately checked into our hotel, then proceded to pass out - all three of us - on the two twin beds. We had a glorious nap, then a delicious meal. The food here is amazing. Lots of fresh vegetables, seafood, various meats, savory soups and the breakfasts are truly like something I've never seen. Ooops, doctor's calling my name gotta go.....

1.07.2013

Upgrade

Michelle and I are on the flight, watching people load. Somehow, when we checked in the gentleman upgraded us to business class! Apparently economy was overbooked. This is off to a GREAT start!!

....yep, our seats have massagers. We are getting completely spoiled.

1.02.2013

Countdown to Germany


You guys, I'm almost outa here!!!! Eeeeeeeeek!!!!!

Green and I fly out Monday at 2:00 pm. We fly to Frankfurt, meet up with Jess (Abu Dhabi) and take the train to Gottengen. Then Jess will head back to Frankfurt and Green and I will spend a night in Gottengen. We'll wake up in the morning on the 9th and take a taxi for an hour to Duderstadt. We will stop into the clinic for a blood test then head to our little hotel (it's all within walking distance). We will have a night to rest, then we walk back over to the clinic on the 10th for an 8:00 am appointment for leukephresis (ongoing blood draw for two hours where they separate my white and red blood cells - the white cells they'll take and multiply by the millions and the red cells are put back into my body). After the two hour clinic appointment we'll head back and rest. The next day I have my first hyperthermia session! They will use elecromagnetic pulse to heat the area around my tumor. Tumor tissue breaks up at 107-108 degrees compared to healthy tissue which dies at around 113. It's a small window, but they've been doing this treatment for around a decade so I feel comfortable. I have further hyperthermia sessions on the 14th, 15th, and 17th (the same day I will receive my first shot with the newcastle virus and dendritic cell injection).

I'm so excited for my treatments!! We are also very fortunate that almost every hotel in the area have saunas. Green and I are planning on doing slow, relaxing walks to and from the clinic for appointments. We will take advantage of the sauna, of the soft, supple twin beds. We will sleep, laugh, and learn so much - I can only imagine - about the alternative European cancer treatments.

I am so grateful for the donations! Thank you for helping me live my dream!! This opportunity is absolutely amazing, it's mind boggling! I can't believe I get to do this! I feel like I need to really absorb how fortunate I am. This trip is HUGE. These treatments are huge. I'm about to participate in treatments that I've been reading about for the past two and a half years. Thanks guys for this. I am so deeply appreciative of your emotional, and financial support! Thank you from the most sacred place in my heart. You all are in there, deep in my heart. I feel so lucky.
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