Monday, March 17, 2008

On Angel's Wings

Yes, I'll be first to admit thats a very corny title 'On Angel's Wings' but let me explain. On March 9th, we made our 16th trip to Houston in 15 months due to the protocol of the FTS drug trial requiring monthly visits and MRI's every 8 weeks. Yes, MRI's for NF2 every two months is insanity (!) but this is a new game we are playing. Never before has the option of trying a drug to halt NF2 been available and the rules will be made and re-made as we go. All I have to say is - game on! Enough of the cliches.

This mid-march trip was special in that we were flown to Houston 'free' by Angel Flight. What an experience! AF provides free air fare for medically compelling situations. With
MD Anderson being one of worlds most renowned cancer centers, it was pretty easy getting approved and flights set up. Flights? Yeah, they use small private planes with pilots who volunteer their time and expense. (And you think filling up your car is expensive!) Anyway it was 3 flights each way (normally would fly Southwest, barely a 2 hour jaunt across the gulf). We met our first pilot, Hall Robertson, at a small private terminal in St. Pete. It was so relaxing parking your car oh 50 feet from entrance (cost nothing ) carrying in baggage and being greeted with smiles and fresh coffee instead of long lines and grumpy TSA employees, then walking to the plane just a few steps out the door. There was no long lines, no shoe's off, evil-eyeing-you security or walking through metal detectors. However we did have to board by climbing in on the wing :) This was difficult for me but improved my technique with each plane change. So we board Hall's plane, it was comfortable with 4 seats total. It looked very lived-in, often used, much like my car!! I felt at home. And not at all nervous....until the engine sputtered to a stop when we were trying to take off. :) Again, it reminded me of a car, just turning over and over again. But cars stay on the ground ;) Hall was great, if a bit miffed his plane wasn't starting. He actually called for back up but didn't need it as the mechanics got it running and up we went. It was a beautiful take-off and smooth flight to our 2nd leg pilot Raul Romero. We boarded Raul's plane much like the first I immediatly noticed - wow this is the Cadillacs of small planes! Or seemed. It was sleek with leather interior seats and an amazing radar screen (probably much more than just radar!!) in the front. It was more snug that Hall's plane but a great flight to leg 3 - Baton Rouge. We met our 3rd pilot Fred (last name escapes me) about 4 hours since we left home and he had a 30 (if I recall correct) year old Cessna. It was beautiful!! It was maybe my favorite, had such character and very roomy inside. Fred like the others was exceptionally kind and friendly. I chose to sit in the back of each flight and Bill was delighted to get lessons in co-piloting up front - a hobby he attempted to take up years ago but could not go further due to hearing loss. The 3 flights home were much like the others with the pleasant surprise that AF had its own terminal at Hobby airport in Houston where we met a very helpful and caring woman and AF employee named Sharon. The flights were great fun with amazing views. I could seriously get used to that lifestyle.

The 3 days at MDA were mostly uneventful . MRI's (four) and bloodwork , and lots of time to kill. The Houston Rodeo and Livestock show was in town and we caught the Monday night show which was FUN and fully real-timed for the deaf. My appointment with Dr. Kurzrock didn't go exactly as hoped for though. It was decided to stop the drug (FTS) due to it not doing wh at we h ad hoped ie start regression. It's been a week and I'm still not sure if I'm disappointed or relieved! As much as I love Houston and the friendly-feel of MDA the monthly trips have become a bit draining on the wallet and time involved so a break is needed.

We will go back in May as Dr. K wants to see if I'm interested in trialing another drug. Which drug? Will let you know! According to her, new drugs that target our mutation emerge all the time. Just no one has thought to apply them to NF2 but only fast cancers. Well times they are a changin. Like I said before, this is the 1st time ever that the possibility of a drug rather than slash and/or burn has been an option. And it's not a widespread option either (2 doctor' s) which is why having Dr. Kurzrock on our side and her position as the head of clinical trials and targeted therapy at MDA is so important to all NF2 patients. Her knowledge and drive to CURE NF2 will hopefully come to be sooner than later. As for me, having to stop FTS is just a blip in the radar of the CURE NF2 mission I'm on.

Last but not least a big thank you to John Steele and MotorFund and friend Sharon Milian Mary Kay Consultant for additional help with travel expenses.

Wednesday, October 3, 2007

FTS Drug Trial - Surprise, It's for NF2

It's October and I am in Houston with my friend for MRI's at MD Anderson. Since last December, it's been four MRI's every two months - brain, C, T, and L spine - followed up with an appointment with Dr. Kurzrock and a refill of my prescription for FTS. Hard for even me to believe but I've have 24 MRI's in 10 months - with no change. And as every NF2'er knows, no change is good news. But is it enough?

While its been said I'll never see a drug for NF2 in my lifetime - it's always the fortunate next generation who'll benefit - I'm here to say I'm 38 years old with 7 major surgeries under my belt which all resulted in devastating losses that make life harder than needs to be. Yet fortune enough to still walk, talk, see and have a zest for living and I'm on a drug trial, along with two others, thanks to a compassionate and forward thinking doctor. Despite the obvious need of drug therapy, it would have been near impossible to be in the trial had I not had 1) insurance 2) time to commit 3) income. Insurance, time, and money sums up the cold hard facts. Thankfully my insurance has approved everything. Thankfully my job with the State of FL is secure and has a sick leave pool. There is never enough money, but somehow through budgeting and small donations I am surviving. This trial requires monthly visits to MDA so airfare, lodging, transportation expenses are in the thousands after 10 months. It is worth every cent.

We don't know if inhibiting ras and therefore rac is the magic bullet for NF2 but it's a smart target to start with. The one thing great about being in a drug trial is instead of debilitating fear of MRI's, or rather the results, like the positive affirmations that line the walls at MDA, there is a feeling of hope and this is vital to anyones well being. I've watched as dozens of friends and acquaintances die slow miserable deaths at young ages from this cruel disease that deserves full attention to stop these tumors that mangle our nerves. This FTS drug trial has given me a new type of hope, not the standard "we hope you won't become deaf, blind, or paralyzed from this surgery," but a true hope that maybe tumors I have will stop growing and new ones won't begin. There are drugs available NOW and more in the omnipresent pipeline that should be tested on NF2 (and NF1). Drugs that have potential to stop the madness for THIS generation as well as the next.

Monday, August 20, 2007

S-Farnesylthiosalicylic Acid Drug Trial Part I

Well this is long overdue. I have been slacking in posting here for no particular reason other than just haven't felt like it, must be the heat. Its been requested that I share what its like being in the FTS drug trial so will start summarizing it today. But what I really want to write about is xenoestrogens, hydrogenated oils, pesticides in our environment and food(!), estrogen dominance, the importance of sunshine and vitamin D, and how all these things and more add up to DNA mutations that lead to cancer and in the case of NF2, well we are born halfway there so it makes sense to be diligent with keeping toxins low and your immune system high. I could go on and on. And will, another time.

I found out about MD Anderson allowing NF2er's into the FTS trial last year. The catch was to
qualify (FDA regulations, not MDA' s) one must have a malignant tumor. Well I'm not exactly cancer ridden but NF2 has had its effects with maybe the worse being the ependymomas in my
C-spine. These tumors are low grade cancer anyway you look at, they supposedly aren't metastatic according to NF2 researchers, or are they? Another topic for another day. So it was this that got my foot in the door.

After several email communications regarding basics like my history and medical insurance approval I had an appointment set for early December 2006 for an evaluation. They said be prepared to stay up to two weeks. Good thing I did prepare, for it took the whole two weeks.

It was quite awe-inspiring arriving at MDA that December morning, the whole Texas Medical Center which its a part of is blocks and blocks of buildings, quite daunting if traveling alone which fortunately I wasn't. Once inside we found our way to the 10th floor to the 'Clinical Trials for Targeted Therapy' clinic. And even though this was my first exposure to so many people in various states of cancer it was exhilarating because for once I was seeing a doctor about a possible TREATMENT to help NF2, possibly SHRINK tumors in time, not the standard doom and gloom and fatalistic attitude that is so common in any doctor appointment regarding NF2 where the only options are 1) surgery -- which always takes something away and the more you have the worse your condition becomes 2) radiation -- with no proven track record and similar risks, or 3) watch and wait. Wait for what? Well for you to deteriorate more of course! This is not to bash doctors who treat people with NF2, the surgeons and radiologists do their best and some exceptionally well. But the body can only withstand so much . Most N2er's are eventually deafened, have horrible balance, facial paralysis, paralyzed limbs, fingers and toes, chronic fatigue. In even more severe cases as if that isn't severe enough, feeding tubes, wheel chairs, nursing homes, blindness (on top of deafness) and death. And speaking of facial paralysis. Can you think of anything more insulting than being beaten up with surgeries, deafened then NF2 gets one last jab in and takes your smile. Your SMILE for heavens sake! But I digress.

Anyway, upon arrival we were escorted into a room where was given packets of info about MDA services, introduced to my patient advocate, and set up CART for the doctor appointment portion. MDA has a language department who sets up whatever interpreter a person might need. In my case, real time text translation. Meeting with Dr. Kurzrock and a whole team it was explained to me what to expect and that over next two weeks would need 4 MRI's, a full body PET and CT scan, and they needed pathology reports from my past surgeries to verify malignancy. For once I felt glad that I had the dreaded ependymomas. Part II coming soon. (Promise) Oh, and in case you are wondering, 8 months on trial and no growth.

Thursday, May 10, 2007

Slow Food in a Fast World

I go to great lengths to obtain nutrient-dense fresh organic food. Since I only occasionally eat out, that means planning, shopping, coordinating, and preparing breakfast, lunch, and dinner 7 days a week in between a 60 hour work week schedule. I work the 8 to 5 grind but in reality its 6:30 am to 5:30 pm. Thank God for lunch hours. For this is when I do most of planning and shopping. It can be tiring. So tiring that when I’m feeling my best, I’ll do a one day liquid fast just to free up time from the planning and preparing meals. Ahhh, what a relief. It’s a necessary and welcome tradeoff though, as I’d rather nourish my body with real food than have a spotless house and live on processed fast food.

I’ve experimented with most every ‘diet’ out there and have come to the conclusion they all have pros and cons. The vegans have some great vegetable recipes, the raw foodists too, but they are unhealthy WHEN FOLLOWED LONG TERM for many because lack the nutrients only animal foods can provide -- no matter what they claim. The Weston Price’ers have the fats right and amen to the naturally raised environment friendly beef, chickens and raw dairy. The basic tenets I apply to healthy eating are this:

1) Eat only unprocessed foods. This means to avoid most all pre-packed/prepared foods like noodle dinner kits, canned soups unless organic, hotdogs, fast food. It’s been so long since I’ve perused the grocery store aisles where these items are found I can’t even recall many! I shop almost exclusively at the local health food store which caters to vegetarians (which I’m not) and normal food like beef, chicken, eggs , milk etc but all organic and a lot from local farms. Oh, my point being, yes even the ‘health food store’ has processed packed foods, some better than others. READ LABELS. I do buy canned tomatoes and sauce by Muir Glen (check out their fire roast tomatoes, delish), organic beef hotdogs, my favorite wheat-free “Fig Newmans”. You get the idea

2) Avoid anything with partially hydrogenated soybean oil, vegetable oil, canola oil, margarine, in other words, anything with altered fats. These fats are found in all packaged foods and grocery store bakery goods to extend shelf life. Mass production requires foods to sit in stores days, weeks, even months. All these types of foods are loaded with artificial colors, preservatives, and flavorings (MSG) to boot. Real butter, unrefined coconut and palm oil, olive oil, unrefined safflower, sunflower, sesame, pumpkin seed oils are all health giving and yes won’t last as long, and probably cost a bit more, but getting your essential fatty acids (EFA’s) could be the number one thing you do to prevent disease, especially tumors malignant and benign. .

In a nutshell, it’s as simple as that.

Today on my lunch “hour” I zipped to Nature’s Food Patch to buy food for next few days as I am meeting a group for coffee tonight at Starbucks at 6, hence no time to shop, as usual. And yes I’ll watch that sugar content. Actually I’ve perfected the perfect low-sugar vanilla latte but another day on that. I make the 20 minute drive and arrive at the store. I love this store! It is a pleasant almost festive shopping experience. That’s another article too. So have my mini list in hand and start in produce -- all organic in bins, no plastic containers here. I grab an avocado and shake head remembering the avocado tree had in yard when I was a kid. We had so many my mom gave them away by the bag full. I wouldn’t touch them. That’s a shame, given their high nutrient content, excellent source of magnesium, calcium, folate, potassium, amino acids and EFA’s.. Next is spinach, I decide on two bunches as it shrinks A LOT when it’s cooked, it will be made into a spinach-onion-turkey kielbasa casserole recipe I made up. Mix it all together with butter and top with parmesan cheese, bake til bubbly and you’ll be in heaven. I then toss a bunch of beets in my cart knowing they’ll be impossible to prepare with my NF2 weakened hands, they look hard to peel but buy anyway as saw a ‘Beets in Paradise” recipe I want to try this week which mixes slightly steamed beets, yams, onions with plain yogurt, garlic, pepper and interestingly, capers. Last of produce is 2 very large organic russet potatoes. Not afraid of potato carbs here like Adkin’s warned us. Potatoes are loaded with potassium and other minerals. Load that potato up with butter and sour cream and the fat will balance out the carbs. Yes fat! It’s satisfying and essential, if use REAL unadulterated fats. At the meat counter all I get today is chicken thighs and turkey kielbasa. I move on and grab a small container of heavy cream, and plain yogurt. The cream is from a farm that raises cows on grass, not grain, no growth hormones or antibiotics. The grass fed cow dairy products really are more nutrient dense. It will be used this weekend to make creamed lima beans, a true southern dish that’s out of this world. My baby limas will need to soak in water a good 24 - 48 hours before cooking. No problem if plan ahead. The yogurt is also made from grassfed jersey cows i.e. again, more nutrients, and will be used to make 5 or 6 breakfast smoothies. (see next topic “The Breakfast Smoothie”)..Checking my email on my cell while taking inventory of each aisle I feel hurried as I’m on my lunch hour. I pick up the pace and grab a bottle of Udo’s Oil blend 3-6-9. It’s a recent discovery and am in total love with this product! I notice nearby, a new oil, could it be? Yes! Organic pumpkin seed oil!! I am ELATED with my find. Pumpkin seed oil is the perfect balance of EFA’s, great for so many things from skin to blood sugar balance and protection from cancer. It’s one of my secret weapons, er, ingredients in my breakfast smoothie. I will devote a whole article to these two oils soon. As pass the deli case I snatch up a container of tuna salad and sprouted grain tortillas, and sliced "no Bgh' (bovine growth hormone) cheddar cheese.. I sigh a minute and berate self because have avoided tuna due to mercury contamination. But it sounded so good I was craving it bad. It’s organic I tell myself.

Arrive back to my office about 20 minutes ‘late’, no one really notices. There is no time for the luxury of dropping my loot off at home. Now as I sit in my car parked 100 yards from door – all the handicap spaces were full -- I devise a plan. Having 7 brain and spine surgeries due to NF2 has resulted in horrible balance, weak legs, and a paralyzed right hand. Just another day in the life I say. I pull a few items out of one bag to lighten the load and trek towards the office building, up to the 3rd floor and neatly tuck my goods in the over crowded refrigerator. Stomach is growling now with hunger pangs, but first two more 100 yard treks, each way, to get all in the frig. I am finally back at my desk trying to look inconspicuous, I lay out the sprouted grain tortillas, awkwardly fight to open the cheese with knife which leaves my frustrated, hand problem again, after success I smugly line the tortillas with cheese and over fill with tuna salad. They are delicious and worth all the time they took.

I sit at my computer as a co-worker walks by with her strong almost chemical-smelling just micro-waved frozen meal. She seems calm and happy while I’m still catching my breath, but I quickly dismiss her and smile as I pop open my recipe file to re-read the “Beets in Paradise” recipe that I plan to make.



1 Medium size Beet
½ Medium Yam
1 green onion
2 Tbsp capers
4 Tbsp Plain Yogurt
1 Small Garlic Clove
2 Tbsp Udo's Choice Oil Blend
2 Tbsp Balsamic Vinegar
1 pinch Black Pepper

Slice beet into thin slices; steam for 15-20 minutes; add diced yam - steam for 10 min or until yams are tender. add chopped green onion, capers, minced garlic. Add the steamed veggies and stir gently. Finally, add yogurt, Oil Blend, vinegar & fresh grated pepper to taste. Optionally, add your own favorite spice mix or or slosh of fine Italian Dressing. Stir and Enjoy.

Thursday, March 15, 2007


So I treated myself to Chili's on my lunch hour today to celebrate exactly one year divorced. It takes courage to dine alone in most restaurants, especially the Chili's type where it's nothing but couples, men in suits, and groups of female co-workers.

Hoping not to look pitiful, I clung to cell phone checking email and then read their "reserve a room for your group" brochure as if I'm going to plan a party there. When you are deaf, or deafened as in my case, you have to learn to be comfortable just yourself because when that wall of deafness drops dividing your life between once hearing and now deaf, you almost inevitably feel alone even when in groups of friends. For me though, I've always welcomed some peaceful time to just be by myself and think about things, make to-do list, people watch, or read a book. Anyway, so there I was comfortable and enjoying a steak fajita lunch. I picked Chili's because they are low on the MSG totem pole according to a few websites. Unless NO OTHER CHOICE I avoid fast food places now due to their MSG and partially hydrogenated soybean oil in everything. Having been rushed out the door this morning I skipped my morning coffee, and yes, that's black coffee only IE no sugar. SO what the heck I think, I order a cup of coffee for a pick-me-up. The waitress brings it and asks if I want cream. I say, "Yes please." I had no plans of putting sugar in my coffee but thought a little half n' half would be a nice treat. I have no qualms with using full fat dairy, my main thing is I prefer organic (or heaven forbid raw) and that's never available in restaurants. I reach for the little cream containers and notice they are not half n' half but a 'non-dairy creamer' An oxymoron IMO. I am disgusted to read the ingredients which were:

water, partially hydrogenated soybean oil, corn syrup, corn syrup solids, sodium caseinate, dipotassium phosphate, mono and diglycerides, sodium stearoyl, artificial flavors.

It's hard to imagine how they even get all those chemicals into a thimble size container much less how 'they' came up with the idea to combine such cancer / disease causing chemicals and market it as fit for human consumption and reputable restaurant chains serve it! No doubt it was a bunch of chemist, not chef's, who came up with that concoction. I feel sorry for the people, and that's the majority, who blindly eat whatever is served thinking if its sold in stores or served in restaurants it must be okay.

This may or may not stop me from eating at Chili's again, my fajitas were delicious. The perfect high protein low carb lunch for PMS day #2. I didn't have time or the desire to ask the waitress if they had any real cream, so I paid the check, got up to leave, and tossed the 'reserve a room for your group' brochure in the garbage as I walked out the door.

Tuesday, March 13, 2007

Sweet Confessions

I started drinking coffee at age 8 or 9. Not just coffee mind you, but a heaping scoop of instant coffee in tap water, microwave heated, and then 3, 4, sometimes 5 heaping, always heaping, spoons of pure white sugar topped off with a few heaping spoons of ‘non–dairy’ powdered creamer. This went on everyday well into my 20’s. Every single day for near two decades my day was jump started with a huge hit of sugar and caffeine. I will not even get into my diet during this phase of my life, it was not good, but will analyze my sugary coffee consumption for now.

I suffered extreme PMS symptoms since mid-teenage years. I’m talking hide-the-butcher knife extreme. Okay, I never killed anyone but in all honesty, it could have happened. Extreme mood swings and fatigue were the norm two weeks out of every month. I remember about age 14 or so downing left over codeines from past prescriptions mine or no. I didn’t want the high they gave you, it was simply the only thing that would alleviate the horrid cramps that accompanied the mood swings. When I was 18 my doctor told me to cut the coffee AND sugar because I had pretty bad fibrocystic breast disease. I did neither and forgot about the FCBD. From age 20 to 24 I was busy dealing with tumors in my neck and head, getting married, and 3 neurosurgeries, the last of which knocked me on my ass leaving me totally deafened, unable to walk a straight line and a paralyzed face which involves more than just a crooked smile but also dry eyes which when not taken care of can lead to blindness and at best, a constant irritation. If anything, PMS worsened during this time - never felt well, was often told I looked frail. The Christmas I was 25 my mom gave me a book “Unmasking PMS.” She apologized as I opened it saying she hoped I would not be mad at her but maybe it would help. Me, always liking a good read, and especially anything about how to improve your health was thrilled with my gift. I started reading it immediately and was amazed, in awe, and shocked at reading the causes and cures of most PMS symptoms. In a nutshell the book said that sugar and carbohydrates worsen PMS and if you eat several high protein meals a day, to keep blood sugar from dropping, most symptoms would simply disappear. It also had charts and graphs showing the progesterone and estrogen surges and dips. I wanted to focus on diet not hormones, much easier to control so I analyzed my diet for the offenders and found plenty. Topping the list was my beloved morning coffee, it never occurred to me that sugar could be igniting PMS and I was curious to see if true. I’d hoped it wasn’t! After mustering up the willpower, I switched to half cup of black coffee instead of my usual sickening sweet concoction in the morning. I was amazed. That very day I felt noticeably better, fatigue was almost non existent. I had found my cure on the very first try.

But like every addict I was prone to relapse. Looking back now I see how much an addict I was, and still am. After sometime on my no-sugar coffee routine and still feeling MUCH improvement PMS-wise I started to crave again. That’s how I discovered nutra-sweet, aka aspartame. Even though it had been on the market 15 years, I’d never used it and had given up diet soda, all soda, years ago. Strange, I know. I loved coffee with aspartame! It was sweet and creamy just like the good ole days. This love affair came to a screeching halt though when one day soon after there was a blurb in the daily newspaper “Aspartame Causes Brain Tumors in Mice.” I didn’t need to know the study behind this, or even if it was true, having a disease that predisposes me to brain tumors, that headline was enough for me to dump my Nutra-Sweet instantly for good. I had other relapses. The office coffee room was always serving up fresh hot coffee with powdered cream and sugar. I often gave in and within the next hour regretted it. So much so I’d write myself affirmations stating I would give up sugary coffee and why to hopefully deter my next craving.

The next several years I did great. Having sworn off ANY sugar in my coffee I settled into the world of teas. This coincided with my initiation into the health food world (I have since stopped referring to it as ‘health food’ but rather simply REAL food) I discovered stevia, an herbal sweetener that does not affect blood sugar at all. It was perfect in teas and lucky for me tasted awful in coffee.

I’m not sure exactly when it happened, maybe 2004, but it was when Starbucks came to town that I sunk into my most recent and longest relapse. First it was for special occasions only, like stopping at Starbucks for a white chocolate mocha after the movies or girl friend shopping. Then the new Clearwater mall was built with not one, but two Starbucks, a stand alone store and one inside of Target. Coffee while you shop, what could be better? But really if not for the pumpkin spiced latte I may not have succumbed at all. There was nothing better than a hot PSL on cold morning at work, or on the drive home. And with the lattes came the PMS again along with new knowledge that sugar is not especially good if you have tumors. That alone should have been enough to just say no. Now that I was back on the “gotta have sweet coffee” routine I searched for alternatives. Hey I had a health food store nearby, surely there’s something better than white refined sugar. And there was, or so I thought. Both rapadura and sucanat were spectacular tasting. They had a deep rich molasses kind of taste in a totally unrefined real sugar. I used both off and on until it became daily habit. Despite they were unrefined and did have some nutritional content to them, I knew they were still sugar and still affects blood sugar and probably more. My nutritional knowledge had grown immensely in these few years yet still could not give up that early morning sugar hit. Add to that more Starbucks popped up, There are now three SB stores within walking distance (if I could walk better) from my office! It became a routine (and pleasure) to slip away about 10 am for a coffee and scan my email or read news while enjoying the coffee shop atmosphere.

The last half of 2006 I was becoming aware again of the effects sugar had on me. I also could not deny, not that I ever have, that ‘sugar feeds tumors.” This was proven many decades ago (see links below) my only question was “by how much?’ I figured since my diet is relatively low in sugar, a coffee a day shouldn’t hurt me - an addicts justification again. But I was becoming concerned because more often than not, every time Id have a coffee, afterward, my symptoms (neuropathy in arms mainly) would flare up huge. The scariest was I could feel a deep burn in my C-spine where I have regrowths and probably new growths of tumors called ependymomas, a low grade cancer. These had been very quiet for about 5 years and I was justifiably afraid of waking the beasts. My instinct was telling me that, yes, I am stirring things up with this daily dose of tumor fuel. Not to mention extreme PMS recurrence and candida issues.

By December 2006 I was accepted into a clinical Trial at MD Anderson Cancer Center.. Will save this topic for another day but the drug is a non-toxic chemo we hope will slow NF tumors down. Heck they are already pretty slow compared to real cancer, but since grow on nerves can be very damaging.. I was in Texas for 6 weeks from December thru January this year and the stress of being away from home and the fact the worlds leading cancer center has a Starbucks in the cafeteria and I had a lot of time to kill, I was in no mood to quit my daily ritual, instead I probably increased my sweet coffee consumption during this time.

It is now March 13th, and as of last Wednesday the 7th, I’ve had nothing but a few sips of black coffee each morn. Once again, instant noticeable lessening of my symptoms which all seem to originate from the ominous ependymomas. I’m almost certain it’s mostly because have eaten near zero offending foods in the last week (processed carbs, sugars). I also started drinking Goatein again, a goats milk whey protein mix by the reputable Garden of Life company. It’s also my non-PMS time of the month, so in truth its hard to tell why I’m feeling so well. Next week will be the true test as when the hormones fluctuate so do the cravings.

In no way do I think I’ve beat this addiction or that I ever will. For the first time I understand why alcoholics can’t even have a weak drink on occasion without causing a complete relapse. But at the same time, I’m so aware of the damaging effects of certain foods that I abstain from most of them. The last 6 years or so my diet has changed radically from experimenting with raw food vegan to what I feel is the most protective and nourishing of all ‘diets’ – traditionally prepared unadulterated farm fresh meats, poultry, raw dairy, fermented dairy, eggs, vegetables and few grains. I still find it ironic that it was my mother, who has never been particularly health conscious when it comes to what we eat, was the one who unwittingly started me on this journey to better health through whole diets with that book she apologized for giving to me for Christmas.

Here’s the ingredient list for your average powdered non-dairy coffee creamer:

Partially hydrogenated vegetable oil (coconut, canola, and/or palm kernel), corn syrup solids, sugar, sodium caseinate (a milk derivative), dipotassium phosphate, monoglycerides, natural flavor, salt, silicon dioxide, sodium tripolyphosphate, vitamin E acetate, DATEM, lutein, artificial color, soy lecithin. May Contain Soy Products.


Wednesday, February 14, 2007

Happy Valentines Day!

What a perfect day to start a blog about nutrition and disease. If you enjoyed that bit of cynicism then you are going to love this blog which is going to be more like my personal journal of my day to day battle trying to ‘outwit, outplay, outlast’ this disease I have called NF2 (see side bar for description of NF2 ).

Cynical I am, but at same time, trying to attain wellness through nutrition via diet is my life’s passion. It’s something that I’ve always been intuitive about, but only in the last five years have I seriously studied and researched, (and practiced) logging thousands of hours, reading medical and nutrition journals, websites and books advocating this or that from the absolute bizarre to moderate views to some downright informative cutting edge information. I take nothing at face value. After all this time the one main thing I have learned is that opinions change and the learning never stops. A friend said it best when she said this nutrition (and supplement) biz constantly “evolves.” Still, many facts speak for themselves which I’m going to try to cover here. At the same time you’ll see a glimpse into my harried madness trying to always eat organic and non processed foods, the great extremes I go to trying to obtain REAL food as the whole foodists call it, and the expense, which is a topic itself when living on a mid-class budget. It takes time, learning how to plan ahead, willingness and a true sense of enjoyment in preparing meals if you are going to be serious about weeding out overly processed food in favor of nutrient dense whole foods. About five years ago I told myself that I would start to love cooking, make it my new hobby, and learn to embrace it, because to do this, that is eat for wellness, it would help my body withstand the damage NF2 brings, or at least not impede it. It also takes an even keeled temperament because the topic of what to and what not to eat is more controversial than talking politics or religion. Therefore, this blog will be anything but preachy, rather just what I learned and how I transform that into how I live. There is nothing more sure to get a rise out of someone than when you point out what’s on their dinner plate will lead to cancer, diabetes, obesity, heart attacks, etc. -- even if it’s true. Bet that got a rise out you, didn’t it? :)