The Ultimate Elixir: Family

I have another infusion today of the NDV. We've just returned from visiting my Polish family, it was the highlight of the trip! Dan finally met Anna, Zosha, Krzysztof, Marcin, and Kasian. I've been battling an infection, and it evolved into my lungs, so I hope I haven't been getting others sick. My brain is all over the place because of my cold, and my exhaustion, but like our overweight cat Bingie, I'm fat and happy. My family treated us like royalty. The food, the love, the laughter. It was so much fun!

Mushroom hunting with the family. It's grandma's favorite activity. 

Checking out the old town of Gdansk where my family lives with my cousins Marcin and Kasia. We walked something like 40 flights of stairs to the top of the church for the best view. My hamstrings are still killing me. I'm embarrassed by how out of shape I've become. For penance I've been doing sets of ten push-ups every few hours in the hotel, I squish it between coughing fits.

Kasia hard at work with the family tree. She and I will continue the family traditions, making sure the family stays in touch forever. It's really crazy, Dan noticed so many similarities between Kasia and I. It's in our mannerisms, we say the same thing at the same time, we laugh at the same stuff, she is my Polish sister. I feel exponentially blessed to know my Polish family. My cousin Marcin is brilliant and thoughtful. My Aunt Zosha is just like my mom, taking care of everyone all the time, even Uncle Krzysztof notices the similarities between my mom and aunt Zosha. It all happened because my dad took an address from an old envelope from family correspondence between elders, and he tracked down grandma Anna while he was in Poland 25-30 years ago for a hemp symposium. She is the matriarch of the family. Once he could prove our lineage (I mean, come on, who just shows up claiming to be family), we have been loved and included into the family ever since. They literally brought him into the home and brought more and more of the family to introduce the American family member that popped up. It was a miracle of kindness, and a blessing in our lives. To have family that cares for us, and we for them, and they literally live on the other side of the world. Thankfully there's iPhones and Facebook so we can text and talk and always be in contact. 

Each family member is perfect, and I just wish we lived closer. But thankfully, my treatment in Germany isn't too far away from my family. It's a gift that I will be going back to Duderstadt for the rest of my life for treatment. It will give me the excuse to see the family often, to grow with them, to stay close and connected. 

Okay, time for another infusion. It makes me tired, and I'm already sick, but I love these treatments because I know they heal my body. I have 100% confidence in this immunotherapy and of my doctor. 

Hope all is well back home. Sending lots, and lots of love! 

I may be sick right now, but my family is an elixir that fills my soul with happiness. Of course, I couldn't leave the family without a braid of their fresh garlic. I've been eating it ever since. Everyone knows garlic is the ultimate cure all. Visiting with my Polish fam was like being home. Not a lot of people get to say that, that they have two homes filled with love and they're halfway around the world. I am overwhelmed by the fortunate life I get to live. The amazing people in my life. 

Now it's time to get bundled up for a walk to the clinic for my infusion. Wish me luck. Hopefully my advancing sickness won't delay treatment.

Germany Again? Excellent!

I'm home; I am resting after flying out to NYC for treatment (yep, what a week). I was able to get my immunotherapy shot, but was also informed that I am dangerously low on my dendritic cells (the part of the white blood cells that boost the immune system and that they use for my treatment). That means I need to head to Germany to engage in an another leukaphresis where they separate my white and red blood cells for harvest. I emailed the clinic just to verify, hoping I could squeak out a few more months before travel, but was graciously informed that it's best to head to Germany ASAP. So, although Dan took off some time for filming, and a few other random days this month, we are hoping that he can take off more time in the next couple of weeks so that he can accompany me for treatment. I kind of see it like a super sexy medical honeymoon. Because there's nothing sexier than life, am I right!?

I'm still on cloud nine from the surprise wedding, and the whirl of my awkward self, filming to share our story. A couple of people have thought I was crazy for being filmed, but I see it as an honor. Our journey has been loud (if you read the blog anyway). It has been hard, and fun, and beautiful, and unexpected, but most of all, it has been an example of following our hearts, of being strong, and true. When we were approached for filming I was hesitant for a little bit, then I thought of the good we could do by sharing what we've gone through. When you get diagnosed with cancer it's like being thrown into a burning ring of fire, and sometimes you can find a way out of the dangerous maze, and sometimes you can't. And it's terrifying. If I wouldn't have explored more than my original option of the neurosurgeon in Wenatchee ("We will put you to sleep and scoop it out."), it is probable that I'd be dead right now - because of the blood clot and dura mater hardening, not to mention the infiltrating nature of the tumor that grew fingers throughout my healthy brain. So much of my healthy brain would be missing - like the controls for my language, and the controls for my physical body. If we wouldn't have researched, and been strategic, and worked tirelessly, it's probable that I wouldn't be alive, or I would be a fraction of the woman I am now.

Why am I alive right now? Why am I not paralyzed any longer on my right side? Why can I read and write and walk and run and research, when originally I couldn't? Why have I been able to overcome so much? Because I am meant to help. I am meant to be a friend to others, to help people navigate and do their best to survive. It is not easy; it's heart breaking. I just received a text today from a brain tumor friend who just found out he is dealing with his second recurrence in less than two years. I want to fix it, but I can't. What I can do is provide solace, and information, and support, and I'm happy to do it. If only I had more power. But the power that I DO have is a voice, and I will broadcast that voice as much as I can to provide information (research, treatments, hope). This cancer life has been a gift of opening my world to amazing people. To immeasurable love and kindness, and at the same time it rips my heart in half. It's bloody and painful, and heart wrenching.

I share my story with the hope that people realize we have choices. That they listen to their hearts, to their intuitions. I hope that people see that in so many things in life we are placed in boxes, on assembly lines (be it treatments, or work, or relationships) but we also have control. That it may be hard, but we can break molds, and surprise ourselves with our own strength.

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!

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 :)

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!! :)

Next Step

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

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!!

The Pleasure of Being Alive

I'm on hold with Jet Blue, figuring out flights. I still don't know when I'll be able to fly back home, but I'm paying for refundable tickets so it should all work out. I booked different flights for Dan already too, and that makes me really happy :) Dan's taking some time off for the surgery and recovery. It's a huge relief that Dan will be with me. He makes me laugh, nurtures me, and puts me at ease. I don't know if you guys remember, but after the last brain surgery, Dan would scoop me up and put me into a bubble bath. He would gently shave my legs and armpits. He coordinated over 80 pills daily, all of them falling at different intervals, even through the night. Dan did not sleep unless I slept, and even then he was so worried about me that he would be taking care of things around the house like food, or laundry, or just laying there softly cuddling me. I never thought I would be as lucky as I am. I never thought I could love someone this much. He's the most gentle and kind human I have ever met. He's amazing. This whole thing is crazy, but I'm becoming more and more ready, not only with the planning but also emotionally.

This is an amazing opportunity. It's the treatment that I wanted, with the best results. Originally, I was going to fly to Germany and do the same treatment. The only difference is that they were going to try and use my old tumor tissue, the one from 2.5 years ago. The problem is that the tumor tissue can morph. So, to have the best success rate you need the freshest tumor tissue. This clinical trial fell into my lap. It landed via email from my brain tumor fighting buddy Jessica. I had written off the trial because I thought that I had to do chemotherapy or radiation - or both - in order to participate. And now, here I am, I'm included in the trial, with the possibility of the absolute best results (I've read that the German treatment is 20% less successful). This trial does not come without costs. There's the cost of the brain surgery, hospital stay, all the medications, all of the scans (MRI, fMRI & DopaPET), all of the testing (pre-surgery language tests, cognitive tests, & surgery clearance), in fact I can't even think of all the costs at this point. The only thing that is free is the actual dendritic cell shots, of which there will be three. And, above the financials, there's the physical cost. We will not know the true amount until after the brain surgery has commenced. I won't feel comfortable until at least 48 hours after the surgery. Last time, I was fine when I came out of surgery, but within 24 hours I started to deteriorate. That's when my duramater peeled from my skull and a blood clot formed in the tumor cavity, and that's why I had to have a second emergency brain surgery. I'm keeping my fingers crossed that I won't have the same complications, or any complications for that matter!

I have to run out the door, literally, to a hair appointment. My final trim and tint before the surgery. I'm opting to keep my hair, although they have to shave it in certain areas. I'm hoping to do a Donald Trump comb over :) We'll see how THAT looks. I might get sick of the crusty blood in my hair and the scab could prove difficult in that birds nest, but it's worth a shot. Yes, hair does grow back but unless you've shaved your head you don't understand what it's like to be bald and to deal with the horrible phases of grow-out. It's something I'd rather not experience again. I probably sound silly, but there are things that you can control, and there are things that you cannot. I like to control my hair. I like having the option of wearing it curly, or straightening it, either way at least it's there :)

Could you guys do me a favor? Could you please, after you read this, choose to go for a walk, or a jog, or do a push up, take the stairs, park further away from your destination, and then take a moment to thank your legs, your feet, and your body. After the brain surgery I will not be able to run for quite awhile. I will not be able to get my heart rate going or it will cause headaches and such. It will take time for me to heal, to ride a bike, to hike a hill, to push myself. Over the past 24 hours I've ran 14.5 miles because I'm so grateful to have the option. I've been jogging around the lake, the neighborhoods, like a complete goober smiling at the dog down the street, and his neighbor the calico cat whom I respectfully named the mayor of Green Lake. I'm breathing deeply, enjoying the pain in my muscles, soaking up life. Please join me by doing something that gets your heart going. Please take a moment to thank your body. Please take a moment to truly enjoy being alive.

I'm Headed to UCLA!

Yesterday my medical files were sent to UCLA (at least the writen ones - the MRI scans are somwhere between Seattle and LA on a USPS truck I imagine), and this morning I missed a call from Dr Linda Liau's office. I thought they were calling because I had yet to pay the $500 to get my records reviewed for the low grade glioma clinical trial with dendritic cell therapy, but when I finally got ahold of the department it turns out they were wanting to schedule an appointment for first thing Tuesday morning. Em, like THIS Tuesday, July 2nd. Dr Liau only holds office appointments on one day a week, so an appointment at 8:00 am this Tuesday is the soonest appointment available. Since I'm traveling from out of state, I asked for a later appointment, and was able to push it back 'til 10:00 am. The stress alone from traveling is going to be tremendous, and I haven't been sleeping well anyway - I need to rest whenever I can. Also, interestingly, they told me that they wanted to schedule me in for immediate brain surgery for either Wednesday or Thursday. I started giggling and said, "Oh my god, I'm panicking. I'm not ready!!" The nice girl responded, "Oh, no problem, no pressure! For out of town, or out of state patients, we try and schedule surgeries immediately so that they don't have to endure any extra expense or stress. But, just so you know this isn't a rush."

So, on Tuesday at 10:00 am I will sitting in Dr Linda Liau's office at UCLA, in the neurosurgery department. We will discuss the various details of the clinical trial and Danny and I will review the risks and benefits of another brain surgery.

The idea of getting dendritic cell therapy here in the United States with fresh brain tumor and no forced radiation or chemotherapy is very exciting. The surgery is scary, but I will not make my decision until I know what I'm really looking at. I need to make sure that they would review a new MRI scan to make sure that my supplements haven't shrunk Hermie. Would the brain surgery be another awake crainiotomy? An awake is preferable since my tumor is so integrated. It's creepy to be awake while they're digging around in your brain, figuring out which is tumor and which is healthy brain tissue, but theoretically, it is supposed to ensure that they won't take very much (if any - which is impossible) of the good stuff. It's a pretty big deal. If they fail they can leave me severely impared. For the surgery, would they use the same incision location? What are the possible complications? Once the surgery has completed, how many dendritic cells are in each shot? They tend to do 1 million, 5 million or 10 million according to the other clinical trials by Dr. Liau, and I want the most dendritic cells possible. How many shots and over how long of a time period would I be recieving shots? What have been the results from Dr Liau's other clinical trials, including phase I of my possible trial? When they do the brain surgery, do they debulk the entire tumor or do they only take out what they need to create the vaccine? Would I have to shave my head again? How do they handle seizures if they occur during surgery?

I'm sure Dan and I will come up with a few other questions. If you think of any, please let me know. We can't have too much information when dealing with such a serious decision.

The wonderful thing about flying down to LA is that it keeps our options open. Just because we meet with Dr. Liau does not mean that we have to enter into the clinical trial.

If I do choose to participate in the clinical trial, I will have to cover the cost of travel, the brain surgery, hospital stay, tests, MRIs, blood work, perscriptions, etc. My insurance covers a portion of those costs (obviously not travel or any possible neccessary lodging), and yes, those costs are significant, BUT the dendritic cell therapy, which is the personalized vaccine to fight my specific brain tumor, is free!! Pretty cool!! This is a therapy that Danny and I were considering in Germany. We go back and forth, constantly balancing over the tightrope of, "Shall we spend the money on the treatment? It's incredibly expensive, but it does have great success..." If we can get the dendritic cell therapy for free, just paying for the standard care at the hospital, it will still be cheaper than going to Germany.

Now, all Danny and I need to do is figure out if the risk of another brain surgery is worth the benefit of the personal vaccine. The answer to that question is going to be revealed in time, once we have more information.

It's a great oportunity, regardless of whether or not we end up in the trial. It's just nice to have the door open, the option to be treated if I so choose. I feel nervous, yet empowered.

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........