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...

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!! :)

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.

To Knife or Not To Knife

Yesterday, I walked a couple of loops around Green Lake with my friend Lauren. On the way to meet her (she lives in Green Lake like me so we meet half way), I saw this gorgeous dahlia. I mean, I think it's a dahlia. It was misting, and every plant had mother nature's glitter. It was a beautiful morning, a great day to be alive, to be healthy, to be able to walk and explore and laugh and talk. The possibility of another brain surgery reminds me of all the trials I worked through before. The first two brain surgeries were incredibly hard on me, and the recovery for months and months and months were horribly trying. But, I got through it. At times I didn't know if I'd get better. I didn't know if I would ever get my speech back together, find the words that I wanted to communicate with, my phonetics and word finding were in pieces. I didn't know if I would ever read again, or once I was able to slowly read aloud, like a child just beginning, I didn't know if I would ever be able to understand those words.

Any fears I might have about undergoing another brain surgery are definitely founded, but it still shouldn't hinder me from moving forward with a successful treatment. I used this analogy with a friend yesterday when she was picking up her cherries (thank you!), I want to hit Herman with a firing range. I want an arsenal to beat this tumor, hit him from all angles, give him no reprieve. Technically, according to the research, it's possible to cure my type of tumor in rats with various high dose supplements, and of course, our friends have already stopped theirs. But, I haven't been able to ingest the amounts that are necessary for killing doses like my friends did. We think that we're winning the fight, that the smaller amounts that I take might be holding Hermie at bay, or perhaps even reversing some of his growth, but the MRIs have not been definitive. In fact, my oncologists, and the radiologists, believe that Herman has continued to grow progressively. In order for me to be comfortable, I need to see more serious results.

At this point I take 29 pills in the morning, 24 pills in the afternoon, 48 pills in the early evening, 8 pills shortly after that, and finally before bed I take 6 pills. Most of them must be taken with whole milk so I'm tethered to a refrigerator. It's exhausting to keep up on the schedule, and I'm sick from swallowing all the pills - not to mention the fact that I feel like a cow. Literally. I find that on most days I don't even leave the house. The supplements may take years to heal me, and I need to keep on them in order to stay in front of Hermie's growth, to hold him back. It's a lot of work. If I go through with this clinical trial I might be able to aide my immune system to fight Hermie on my own. My body might be able to clean up the tumor, and heal itself. I could still take the majority of supplements, or all of them if I so chose, as my immune system also went to work. It would be an arsenal against Mr Herm. What's better than that?!?!

I'm scared to do another brain surgery, I think I've made that blatantly clear, yet I'm excited for the possibility of a personalized tumor vaccine. The freshest tumor has the best chance for success, so the surgery truly is necessary to be the most effective. Bad things can happen during surgery, I'm proof of that, and I'm actually very fortunate because I recovered from most of the ill effects of my brain surgeries. Some are not as lucky. But, this treatment could also heal me. It's a gamble, and we won't know if I'm a winner unless I go through with it and see what happens.