Monthly Archives

December 2012

Uncategorized

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!

Continue reading
Uncategorized

Training

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…

Continue reading
Uncategorized

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…

Continue reading
Uncategorized

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.

Continue reading
Uncategorized

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…

Continue reading
Uncategorized

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

Continue reading
Uncategorized

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.

Continue reading
Uncategorized

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…

Continue reading
Close