Monday, December 31, 2012

Cheers to Another Fabulous Year

Hello my friends! I hope you all have a safe and wonderful New Year's Eve. I am so filled with gratitude for the past year and can barely contain my excitement for the future! We have so much to look forward to, a life full of surprises, time to build on our momentum and I love it :) I think to myself all the time how lucky I am. My resolution is to think about others more often than I think about myself. I had gotten in a bad way about my journey, always focusing on me and I hate it. That's the beauty of life, though. You can always change what you don't like about yourself. You can be anyone you want, you can shift priorities, and decide how you want to live your life. It's beautiful. You're never stuck in a box, unless you want to be :)

I love you guys!

Wednesday, December 26, 2012


Danny and I arrived home yesterday, and it feels so good! The time we spent back at home in Friday Harbor was AMAZING, but I've been increasingly nervous about the Germany trip. There are all kinds of details to take care of, and of course I'm trying to remain rested for the long trip but that's hard to do during the holiday season. A year and a half ago, my first seizure occurred a week after an international trip. I believe that the traveling was much harder on my body than I realized, then to mask my exhaustion I chugged espresso day after day. I now know that I need to be very diligent about how I treat my body. I just don't have the ability to push things like most people.

I figure that since I can't push my body like most others, instead, I will train for the trials that I can prepare for. While Dan and I were in Friday Harbor for Christmas, I ran my furthest distance since the surgery. It was 6 miles. Somewhere around mile four Dan and I started high fiving, realizing that only two months and a week ago, I was on an operating table while Dr Liau gently removed my brain tumor. I have recovered so well! This has been such a change since my first brain surgery. I feel incredibly encouraged by Dr Liau, and her fine skills. I have been lifting weights, running - even challenging myself with sprints. I want my body to be in tip top shape to combat the exhaustion of the trip. I don't want to be a burden on my travel buddy. And, I want to have a canvas that will excitedly accept the treatments like vitamins. I want a body that is prepared to use the immunotherapy to heal itself. I'm having so much fun with the physical training, and still taking time off with friends - the best of both worlds. But, as time nears the trip I will probably be hidden at home. Even if I'm just in bed, not sleeping, I'll need to keep my body rested. I'll be yo-yoing between exercise and downtime. It's weird, but I cherish my body's ability to move, to sweat, to rip my muscles then heal. I love the fact that I'm alive, and I'm excited for this new adventure!

Tuesday, December 25, 2012

Merry Christmas!

I hope all of you are engulfed with laughter this morning, get your fill of hugs, and feel completely loved. Danny and I are so grateful for our amazing family and wonderful friends! Thank you for making our lives constantly so perfect. We love you all!

Monday, December 17, 2012

On To Immunotherapy

Good morning friends! Here's a rundown of things....

1. Immediately after procuring my treatment appointment in Germany, I had the "fertility" talk with my NYC doctor. He said, "You haven't even started the treatment, and you have plenty of time. We can discuss this large issue when I see you next." So there it is. I didn't have time to do the egg harvesting anyway. For now I can take that issue out of my brain.

2. After a ping-pong of emails between two incredibly diligent and efficient doctors from opposite sides of the country, it was discovered that my tumor tissue is unusable for an individualized vaccine. The remaining tumor has been treated in formalin which has then been placed in wax blocks. However, before the surgery I wrote about an immunotherapy that uses your dendritic cells and a virus to prime your body's cancer defenses. I am now on track to begin treatment in Germany with the Newcastle virus. If interested, you can read more below (written by doctors from my clinic). Or, if you would like to read the entire paper, please click here. As for the cost, it is the same. I will still be doing the leukephresis and multiple shots, but this time it will be with my dendritic cells and the Newcastle virus.

2.1.3 Newcastle disease virus in treatment of GBM; a tool for improving DC therapy besides dendritic cell therapy cell therapy another promising approach for the treatment of malignant brain tumors is the treatment with replication-selective viruses, also called oncolystic viruses. This is based on the fact that most tumor cells are more or less unable of an effective virus defense. This approach is also known as virotherapy. The application of viruses for cancer treatment is based on reports since the beginning of the 20th century on temporary improvement of cancer following natural viral infections or vaccinations against viral diseases. (DePace 1912). Meanwhile several replication competent viruses (mainly herpes and adenoviruses) were tested in vitro, in animal models as well as in phase I/II clinical trials for treatment of malignant brain tumors (Shah et al., 2003; Rainoy & Ren 2003; Wollmann et al., 2005). However, the viruses have to be genetically modified in a way that makes sure that they selectively infect and replicate in tumor cells. Within the viruses tested for human anticancer treatment the Newcastle Disease Virus (NDV), an enveloped poultry virus with a single strained RNA as genetic material, seems to be one of the most promising candidates. NDV is not a pathogen for humans, and is absolutely harmless causing  only mild flu-like symptoms or conjunctivitis in the worse of cases (Lorence et al., 2001; Reichard et al., 1992). NDV shows a natural distinct tropism for cancer cells. Cancer cells infected with NDV can be killed directly with the virus within a short time after injection, whereas normal infected cells are not lysed by NDV.. 

As described earlier, tumor cell lysate may be the better antigen source for priming of dendritic cells because it contains the whole antigen repertoire of the tumor. However, it has to be taken in mind that most of the antigens expressed in tumors are poor inducers of immune response and are often recognized by the immune system as poor self antigens (Vergati et al., 2010). Opposed to this adjuvant active specific immunization based on tumor cells modified with a low pathogenic strain of the NDV has been reported to achieve sustained immune responses in patients with advanced colonic cancer and kiver metastasis (Lehner et al., 1990; Schulze et al., 2009). NDV can have lytic activity on tumor cells directly as well as immune stimulating properties that affect both innate and adaptive immune responses. Infection of tumor cells with live NDV results in a potent up-regulation of cell adhesion molecules on the tumor cells surface (Lehner et al., 1990; Washburn et al., 2002). Expression of viral proteins on the tumor cel surface and presence of virus derived pathogen-associated molecular patterns (e.g. double -stranded RNA) result in breaking of host tolerance towards the tumor in vitro (Bai et al., 2002). The T cell stimulatory action of dendritic cells pulsed with lysates of NDV infected tumor cells as well as the antitumor cytotoxicity of macrophages and monocytes is increased (Schirrmacher et al., 2000; Washburn et al., 2003; Zeng et al., 2002). Finally,  NDV induces an increased production of various cytokines, e.g. Interferon-a as well as chemokines, influencing the migration, the activation status and cytotoxic activity of various immune cells (Lokuta et al., 19996; Schirrmacher 2005, Schlag et al., 1992). Clinical phase 1 and II  studies in various tumor entities have proven the safety of active specific immunization with NDV-modified tumor cells. A detailed description of the mechanisms of action of NDV modified tumor cell vaccines and results from other studies in cancer patients were reviewed by Schirrmacher (Schirrmacher, 2005).

In malignant brain tumors, case reports as well as clinical phase I/II studies have shown that treatment with intravenously applied NDV as well as with vaccines utilizing NDV modified tumor cells can induce a clinical anti-tumor response in malignant brain tumors with objective clinical responses as well as with a trend towards improvement of overall survival (Csatary & Bakacs, 1999, Csatary et al., 2004; Freeman et al., 2005; Scheider et al., 2001; Wagner et al., 2006). Recent results from our group have shown that a therapy with dendritic cells in combination with the NDV virotherapy may improve the clinical anti-tumor response in patients with GBM (NeBelhut et al., 2007, 2011). Patients were pre-treated with intravenously administration of NDV Dendritic cells were primed with NDV modified tumor cells or with NDV alone in patient with tumor recurrence. When tested in vitro, NVD primed MoDC of such treated patients induce the activation of autologous CD8+ T cells with release of IFN-y. This leads to the hypothesis that, if viral antigens are expressed on the tumor cell surface, a NDV specific dendritic cell therapy may lead to the induction of NDV specific CD8+T cells and thus to the induction of a specific immune response against the virus infected cancer cell (NeBelhut et al., 2011).

3. I now need to get blood work done within the next week and send it to Germany. It's a final check to make sure I'm healthy enough for treatment. I'm getting nervous and excited, there's a lot of medical stuff to do. Michelle, my sweet travel buddy has been researching the train system, hotels, etc. She's got her Germany travel guide and pocket German language book. As for the details of travel, MG has it all figured out, I don't have to think about a single thing :) She's the best!

When I found out that I don't have usable tumor tissue I freaked out. I completely panicked and I worried that I shouldn't spend the money on the Newcastle treatment (along with the hyperthermia). But then I started re-reading about the treatment and was reminded that it's most effective when the tumor burden is low. It's scary to spend the money, but I have to do whatever I can to aide my body's healing properties. I can't just pretend that the tumor won't grow. I have the responsibility to try every intelligent option, regardless of the cost or effort. I know in my soul that I've gotta do it or I'll become depressed. Deep down, if I don't go for it I'll know I'm not doing everything that I could, and that translates into me giving up. It's just not an option. I'm excited, and nervous, and thrilled at the opportunity. This tumor dictates our lives. It is a ticking bomb that must be dismantled.

Here's your laugh for the day. Dan sent me this photo from work on Saturday. I literally laughed out loud :)

Friday, December 14, 2012

Love to Connecticut

I have been a zombie since I saw the news of the elementary school shooting in Connecticut. This story is literally heart breaking. So, so, so sad, and I hurt for the families, and the community. I think our whole country is in complete shock. It's just too horrific for us to digest. Such an evil act against sweet, innocent, beautiful little children and their protectors. I can't write anything else, I'm going to use the rest of my day to send my love, and energy, and prayers toward Connecticut.

Wednesday, December 12, 2012


I was going crazy, completely restless so I got dressed, grabbed my seizure pills and phone, a house key, and I was off.

I walked/slogged/sprinted around the lake, all by myself. Heeeey-oooooh!!! I'm back! Look out, Green Lake Gump is back with a vengeance.

Tuesday, December 11, 2012

Tumor Hunting

Ok. The enema happened. Some of my cancer friends swear by them, others hate them, though most haven't tried one. That's the great thing about options, you can make your own decisions in life. For the record, for the first several hours I felt great, that is until I ate something. For about 24 hours after the enema, each time I ate something I could hear and feel my unhappy intestines and organs trying to digest. I just don't know if the coffee enema is for me. Healthy things shouldn't physically hurt you. It just doesn't make sense. Unless I did something incorrectly in the procedure, or maybe I ate the wrong foods afterward? I might try again in the future, but for now the coffee enema will not be a regular occurrence.

For the past several days I've been trying to track down my tumor, figure out what it's preserved in, the volume of the tissue, how to get it shipped to me, etc. I've been writing back and fourth with three different doctors - the whole thing is crazy. It's a lot of work being general manager of your health. I imagined, when I was first diagnosed, that one oncologist would help use his/her connections with treatments, clinical trials, recommendations with cutting edge information, in the case that he/she were limited with personal treatments. I had no real knowledge about hospitals, I had never even broken a bone. I now know that hospitals are just big businesses (where some amazing things happen). Also, there's really either not a great database within doctors for accessing treatments, clinical trials (there is one, but it's not great - not updated often enough), or adjunct therapies - or the doctors of my past (except UCLA) have just been too busy to help me out. Maybe it's a combo. What am I saying, of course it's a combo.Ok, I'm ranting. Sorry about that. I think I'm just cranky about having to research everything, contact everyone, and figure it all out. It's exhausting. It's impossible. I wake up in the middle of the night wondering if I'm making the best decisions. It's enough to want to give up at times.

Here's a photo taken along HWY's a Christmas peace heart...I LOVE IT :) Maybe it's telling me I shouldn't be such a cranky buffalo face.

Friday, December 7, 2012

Coffee Enema

Three guesses about what I'm about to do when I finish this post.....

Really quick, thank you for all of the amazing comments, and support for my treatment!! I appreciate you guys so much!

I have a funny, gross post today...I have been meaning to do a coffee enema for about, well, a couple of years - ever since I started researching important things to do for cancer patients. I really do want to do this enema, for the results, but I'm TERRIFIED of the process. Coffee enemas are very effective at stimulating the immune system. (Check out The Gerson Therapy.) Therefore, I figured it is now seriously time for me to buck up. I've made it this far, taken all kinds of supplements, conquered a few brain surgeries, and now I'm embarking on an immune system boosting treatment with the vaccine....I should be woman enough for a coffee enema. Right? GROSS!!! I can not believe I have to do this. I'm supposed to do it once a week. I hope this doesn't turn into a complete disaster. Wish me luck. Sorry, is that too much to ask? Sorry if you're totally offended.


Here goes nothing. Or, more accurately, here goes my innocence and dignity...

Wednesday, December 5, 2012

The $100,000 Shots

Oh guys, Dan's at the gym, and I'm panicking. Seriously panicking. A hundred thousand dollars for the shots?!? What am I doing? That's the shots alone. We've seen the monster of Hermie fighting against my best efforts to stop him. This is so much money, and it's not for a child or a college fund or even a house. This is to hopefully save my life. You get to the point where you would do anything to save your life, but it's still terrifying. I still can't believe I'm in this position - probably because I never look in the mirror (total denial), and because I'm home 95% of the time.

I have to do this though. I can't just sit here and wait for brain tumor growth.

This whole thing makes me nauseous. I don't even want to pay to fix my hair with extensions or some sort of hair thing to make me look pretty because I don't want to waste the money, or feel vain when I'm dealing with so much big stuff. Yet I want it. I want to feel gorgeous with a full head of hair, to feel sexy, and young, and invincible. To be able to blend, and laugh, and not have to wear a hat or worry about my scar showing through. I'm going on a tangent...sorry about that. Just ignore me. I'm going to find Bingie and cuddle for a bit. Good night.

Overview of My DCT

My hair is growing pretty quickly. I'm so grateful that I do not work so that I don't have to deal with the image issue! I can do a pretty sweet comb over - I need to take a picture of that (maybe later today). On to bigger news though.....I'm headed to GERMANY!

I don't even know where to begin....

Hope I can make sense of all this with my keys. My white blood cells are well above normal meaning that I am the perfect candidate to undergo dendritic cell therapy in Germany. I am waiting for an email from my NYC doctor with a few dates in January for me to pick from.

1. Two weeks before I leave for Germany I need to get my blood work done again to check for my white blood cell count, my kidney function, liver enzymes and electrolytes - stuff like that. I need to have that go well or I can not do the dendritic cell therapy. In which case I will still go, and take the opportunity to get some other alternative treatments like hypertherpia and such.

2. If I pass the blood work, I will head to Germany sometime in mid January.

3. Day 1 in Duderstadt I will have another blood test.

4. Day 2 I do a procedure called leukapheresis. It's a two hour procedure where they continuously draw my blood, removing the white blood cells and re-inject the blood back into my body.

5. From Day 3-6 I will get as may hyperthermia treatments as possible, as well as a treatment called newcastle virus shots.

6. Day 8 I will get my first dendtritic cell shot vaccine, then I can go home.

The trip will take a minimum of 8 days, but that's just the time in Germany. It, of course, will take some travel time to and from.

7. Four to six weeks after Germany I will fly to NYC to get my next shot. Over the next year I will fly to NYC five times to get more shots.

8. In 2014 I will fly to NYC for vaccines four times.

9. In 2015 I will fly to NYC for vaccines three times.

10. In 2016 I will fly to NYC for vaccines three times.

11. In 2017 I will fly to NYC for vaccines three times. At the end of that year, if there is still no tumor growth they will consider me "cancer free" and I will no longer need to do more shots!

In shots alone it will be around $100,000. You pay as you go, and the price is based on the Euro. I have no idea how much this is going to ultimately cost. I tried doing supplements, diet, and exercise alone and the tumor still grew (albiet not very fast). I am planning on remaining on program, but adding the treatments in Germany and the five year dendritic cell therapy treatment.

I am very excited about this new chapter of my life. It is going to have a huge price tag, but I can not tip toe around my health, I need to exhaust the most cutting edge treatments no matter the cost. This is a five year commitment, which sounds crazy when I've heard and read that my average life span is equivalent. I have a nasty type of astrocytoma, and it is something to be respected. I need to fight smart, not just hard. At this point, Dr Liau told me that there is no measurable tumor, that she was able to perform a gross total resection. I feel this is the exact time to start this treatment to jump start my immune system, teaching it to clean up my tumor. I know what it feels like to chase the cells, trying in vain to clean them up, to shrink the tumor. It's too stressful! I want to try and keep this clean slate, and I will do it at any cost.

It's exciting, thrilling, nerve wracking, and a little stressful. After happily discussing everything with Dan, his smile faded, he looked at me soberly and said, "Huh...I guess there goes kids." We both sat there for a few minutes and then started laughing, realizing that we were jumping waaaaay ahead of ourselves :) Women have babies at 37 sometimes....right? :) Least of our worries, but things like that do pop into our minds from time to time.

Another note about Germany, my travel partner will be my buddy Michelle Green! I'm so excited to take this goofy, laugh filled trip - which always happens with her :) She's taking off time from work, and has already started researching flights, trains, cars, and our sweet little German town in the middle of nowhere. I will be in great hands! Even though this a medical trip, it feels like it's going to be a girls trip, a vacation. I CAN'T WAIT!! :)

Tuesday, December 4, 2012

Next Step

I'm headed to Germany!!!! More details to come tomorrow. WOO HOOOOO! Eeeeeeeek.

Monday, December 3, 2012

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!!

Sunday, December 2, 2012

Partially Back

Hi Friends! I'm on limited technology. And I have to say that Dan is truly amazing. He can read me so well. In my downtime I've been able to focus on resting. I started a new routine in the mornings, I wake up and pick up the house, make the bed, do any random dishes from Dan's breakfast and I've even been doing small loads of laundry. I do chores for one hour, then put the kettle on and I start stretching. I make a tea, as it cools I continue to stretch and do floor exercises.

I've been able to paint two large canvases for my niece and nephew, which is VERY exciting! I lay in bed every day from 1-3, sometimes napping, other times just laying with my eyes closed (usually pinned by my cat). Dan has been joining me on evening walks. For the first time in weeks Danny had Saturday off, so yesterday morning Dan and I walked, and jogged from our house down and around the lake, then home. The entire trip was about 4 miles. I slogged a total of 1 mile (not consistently).

This morning Dan took me to the gym for the first time since the surgery. We spent a little under an hour, which is fantastic! Heading to the gym is a very big deal because the noise of the loud music, voices, weights clanging - the smells of cleaners, the bleach and vibrations of the cardio machines can be overwhelming at times, triggering auras. I have always been able to get out of the gym before it has turned into a seizure but it's still very scary. Today though, it was a complete success! We worked out on the cardio machine, we did weights and I even went into the woman's locker room to weigh myself without Dan's supervision (I can be overwhelmed at times doing things alone without Dan or someone in case of a seizure).

I feel like I'm focusing on resting, and utilizing my energy for physical activity which is integral for my improvement. I appreciate your patience with emails, texts, phone calls and Facebook stuff. I'm still not back, and at this point in emails alone I have over 75+ legitimate emails that I have yet to respond to. I love all of my friends and family so much, and I'm sorry I'm not a good friend these days. I don't know how long it's going to take me to get caught up, and I'm sorry for that! It's probably going to take a very long time. I probably also won't be up for social stuff, even walks or runs for a bit. It's amazing how tired I am after a normal day, for now I just need to remember that I'm healing and I need to get into a normal routine, take it easy, and as soon as I'm able to get my life semi-back to the way it was, I can start getting social :) I think, initially, I jumped out of the gate running and it was a mistake. I'm fixing it though :)

I love you all, so much. I'm sorry to those of you who I have yet email back, etc. I appreciate the patience.

Tuesday afternoon I have a phone call with my NYC doctor. He will review my surgery notes, my blood work, and my overall health to see if I'm a viable candidate for dendritic cell therapy in Germany. I'm excited, and nervous. My stomach is full of butterflies. Not much rest for the weary :)

This therapy could help clean up residual tumor (the invisible cells) and teach my body to recognize tumor cells as the enemy for the future. To train my body to seek out and rid my body of cancer cells would be AWESOME!! Fingers crossed that the appointment goes well. I'm also grateful that I'm able to discuss my situation over the phone with my doctor, that I don't have to travel. Lots to be thankful about.
Related Posts Plugin for WordPress, Blogger...
Back to Top