And Behind Door #3 We Have...........?

First let me start by telling you that we are going to play "Pop your balloon and then fill your bucket". LOL Seriously it is a technique I learned in my young college/leadership days while serving as a resident adviser in housing and residence life at Northern Michigan University. We practiced it in learning how to give and accept constructive criticism and feedback for self and team improvement. I am going to use it on you to lay out the facts/updates which one may find disturbing at times but then I will also share with you something that may lift you up.

Behind the mystery doors........synopsis of the 3 opinions so far

3 neurosurgeons have been asked for their opinion. The first in May, the second at the beginning of July, and the third yesterday. Two are from prestigious centers in California and one from a top center here.

Surgeon 1: (words via email)

There is certainly significant narrowing of the brainstem, but the distance between the two ANs differs from slice to slice on the various MRI scans. While the tumors could be "unchanged" in size, this really means that there has been no significant measurable change in the tumors of more than 1 to 2 mm, since this is within the range of measuring error. Thus a tumor that is 1mm larger may be called "unchanged", but could be impinging more on the brainstem. I agree that you should be concerned about brainstem compression, and if you did become sympotmatic, then you would likely require debulking of the left acoustic neuroma. We could do radiosurgery on the left AN, but if it did swell and you became symptomatic, then you would require surgery for the left AN.

The main symptoms would be weakness or numbness in the arms or legs or face, balance problems, or potentially some speech and swallowing difficulty. If that occurs either from tumor growth or swelling after radiosurgery, then surgery would be required.

You could do surgery for a debulking followed by radiosurgery for the resiudal tumor, and that is my preferences in NF2 patients such as yourself. The hope of the debulking as opposed to a complete resection would be that a debulking followed by radiosurgery would have a better chance, in my opinion, of preserving facial function.

As far as timing, the obvious choices would be to
1) wait until the tumor caused symptoms, and then treat,
or
2) treat now before symptoms would occur.

Number 2 may be lower risk since it is often easier to operate before the symptoms are severe, but there is a risk that the surgery would cause problems that would not otherwise occur for several years if we chose to observe the tumor instead. There is no perfect answer, and I would be willing to go either way based upon your decision.

Surgeon #2: (my synopsis based on the captioned dialogue in the appointment)

Yes. I should not fool myself into thinking I can escape surgery and the present situation. Surgery should be done at a convenient time but not wait until next year or the winter (2008). He agreed that the fall (October or November) would be a good time.

His proposition is to do a "debulking" of the tumor. This means removing only a portion and not the whole thing. His plan is to remove the supposedly "dead" necrotic center (hollow it out) and to stay away from the nerves and brainstem. In addition, he would remove the meningiomas (different tumors next to the big one) and part of the cerebellum to allow the brainstem more room so it is not as compressed (keep in mind that the tumor on the left is still there and there would be some of the right tumor remaining).

His approach he feels is less aggressive where (although not a guarantee) it is safer in regards to preserving the functions I have with facial, vestibular, and the brainstem. The surgery would be 3-4 hours.

At a later date, I could consider radiosurgery on the left tumor as there would be more room to allow any possible swelling of the left tumor after treatment. Or I could get surgery on the left tumor when it became necessary.

Surgeon #3: (spoke to Harley on the phone and the following is what Harley related to me)

The surgeon looked at my MRI and asked Harley if I had any sort of vision problems. Harley told him I had and the surgeon inquired further. I have had optic nerve swelling which was diagnosed in February 2005. I discovered in the reports that we received in the mail on Monday that the ophthalmalogist documented this condition as Papilledema (although I was never told that by him) and I have been prescribed and taking a medication known as Diamox since that time to keep this swelling at bay.

The surgeon told Harley that if I do not get surgery soon, I am in danger of going blind or dying. Lovely news, eh?

I was very upset. I think the blind part is what really upset me and created a new panic or fear (or at least deeply ripped open an old wound).

This surgeon's recommendation is to not address the tumor on the left but to address the tumor on the right as surgeon #2 proposed. However, surgeon #3 feels the tumor on the right (the larger one) should have a "COMPLETE REMOVAL" instead of a debulking. This would mean scraping (peeling) the tumor off the facial and vestibular nerve and the brainstem. I am not comfortable with this plan.

The reason for this is that the surgeon feels the tumor will grow back within 4 years and I would have to get surgery again. Although I have referred to this tumor as "dead" or "dying" really we don't know that. We are just basing it on the fact that it was the goal with the first treatment, it has stopped growing and has been stable for 2 years, it is showing signs of cell death on the MRI from the very center, and I have made many improvements and not been having the symptoms I had the first year when I could not function off of steroids.

The surgery would take 6-7 hours from what I understand.

Ok. Now I have to fill the bucket.

Truthfully I do not have much time to write all the glorious things I have experienced, been thinking about, and wanted to share with you. So I will just tell you a few quick ones. Perhaps when I leave out of town to visit family on Thursday I will be able to write out some of this to type later if the ride is not too bumpy. ;o)

Good news: I am really fit and have continued to make remarkable improvements!

As some of you may recall, I took a bad fall in the driveway last April and sprained my ankle. It has almost healed now so I have been able to commence running and water aerobics. In fact I went to water aerobics just yesterday and thoroughly enjoyed it! It is a great sensation for me because I can do moves in the water that I would not be able to on land! Also, I really like the water and it is comfortable to be able to do this in clear water not over my head. If I am swimming I have to wear a mask because without touching bottom and if my eyes are closed, I get the disoriented feeling of vertigo.

I restarted running in the end of June. I actually ran the furthest I have run for the year and quite possibly since before treatment! (I am not sure as I went on a long run in March 2006 but succumbed to a horrible migrane as the optic nerve swelling returned when we tried a taper. I can't remember exactly how far I ran back then as the headache won over my memory of distance). However, little Katie had a hard time after that run as she had surgery in 2005. Her leg was sore so I had to give her a few days off and then it got too hot to take the dogs running. Therefore I took a break from running due to the hot weather but have since gone for another run last week.

The BIG NEWS..........my hard work, endurance training for the marathon last fall, weight lifting this year, and training on the BOSE ball balance device has paid off! Harley and I celebrated our 7th anniversary on July 16th by doing something I would have thought ordinary years ago but was really special to me now. I really wanted to know if I could hike my old stomping ground Tiger Mountain. It is the closest mountain/elevation hike to the Seattle area.

I did it! It was not that hard either and I was not that sore afterward (just a little the day after). In fact I hiked up with no poles and then used the poles on the way back down. At the top it was steep with loose gravel so it was really challenging for the small part of that going down even with poles. I had worn the tread off of my Keens already so Harley had to hold on to the hydropack on my back for the section going down.

My good friend Yumi (who I actually met years ago on top of Tiger Mountain) took me to Rattlesnake Ledge hiking trail last Saturday and it was fantastic! I had never been on it and it is now my favorite closest mountain hiking trail! The Pacific NW woodland on the way up is so magical and enchanting and the view at the top is phenomenal!!!! It totally surpasses the views from Tiger (before the trees grew at the top!!), Little Si, and Big Si all put together.

One can see the big guy from a perspective directly across (4000 foot Mt. Si which has been one of my favorite challenging hikes over the years). I still do want to do Big Si again (hoping I can fit it in before this surgery). I have not been on that mountain since spring/summer 2003.

Since I am talking about hiking and my friend Yumi, I again want to congratulate her and share the good news of her recent feat and accomplishment with you. On the weekend of July 6th-7th, Yumi conquered our highest peak and glory Mt. Rainier. Yay!!!! Woohoo! Way to Go! She has been seriously training for 2 years now and her hard work has paid off. She has some great photos so if we ask really nice maybe she will share her link with us for posting on here.

My consultation with neurosurgeon #4 will be on Monday August 6th. So until then, have a happy remaining July and happy summer!

- Beck :o)

Want to see my brain?

I am going to forget who I am sending what to. So to make it easier, I am going to try posting the updates here. I promised you all many months ago (or is it over a year now?) that I was going to post a picture of my MRI. This a slice of the latest scan from April 2007. I had not been brave enough to look at the cd for over a year. This image was made possible by Harley who loaded it onto the computer for me.

As you can see (all the white are tumors), I am in a tight spot (or a pickle). That thin dark spot squished between the two white blobs is my brainstem. So there REALLY is NOT room for any more growth. Therefore brain surgery is in the forecast within a few months (the fall....probably October).

I am getting confused looking at the image now as the tumor on the right is the one I had treated and should be the larger one with the dark center. Whoa! Is my mind tripping or did the image somehow get flipped around wrong?

Anyhow, the latest proposed plan of action is to scoop out the black center of the one that was treated with radiosurgery (which is the larger tumor). The reason only part of it will be removed (referred to as a debulking procedure) is that -

a) the tumor has been stable and showing necrosis (cell death) for a couple years now. Therefore, hopefully it really is dead and we do not have to worry about a regrowth from tumor cells left behind.
AND
b) trying to peel the tumor away from the nerves (facial and balance) and brainstem can result in permanent damage to those structures and their function which is what we want to try to avoid.

Oh yeah, and it has been proposed to also pluck out the other tumors (smaller white blobs) on the same side that are touching the big fella. Those are a different kind of tumor called "meningiomas" which should be in the lining of the brain and not in the brain tissue itself. To access all this, a small chunk of my cerebellum may be cut out.

Seriously though, I experience many good things and natural "wonders". After the appointment Monday we went to one of my favorite places in Seattle (the Volunteer Park Conservatory) and I was tickled by tantilizing visual wonder! I was in such awe over the colors, shapes, patterns, and textures of all the plants and flowers there. I felt as if I were in a fantasy dream!

I have many more of these type of experiences but I just have not had a chance to write and post about them. I am busy researching, preparing, and taking this all in.

On a positive note I am in really good shape/health. Heck if I did not have this dang NF2 maybe I could train and climb Mt. Rainier! Alas my balance will not allow me to do so but given the picture above, the doctors are pretty amazed that I walked a dang marathon and climbed the city's tallest skyscraper!

My focus starting in 2007 has been to work on my balance and regaining my muscle. My plan really has been to prepare to return to scuba diving and also to become more of an avid runner. Well the diving is going to have to be on hold again but at least I have been heading in the right direction. I will not be able to lift weights and do strenous things until the surgical area heals. Thus I am trying to do all that now in preparation for the recovery phase.

Honestly it cannot be predicted with guarantee what will happen as far as complications and side effects. Everyone and every situation with NF2 and these tumors are different. I really only expected to go deaf after radiosurgery and did not imagine I would not ride a motorcycle anymore, not rollerblade anymore, not hike like I used to, not jump into a lake or pool with my eyes closed, hold off diving for now 3 years, drink out of a straw for a year, have half my face freeze up, have visual problems, and yada yada.

Anyhow, with any sort of illness and surgery it is always a better recovery and outcome if one is healthy and fit. It makes sense! So this is my strategy and what I am working on in 2007.

Feel free to ask me any questions! :o)

New Life

Photo taken by Harley Dufek in Labadee, Haiti June 26th, 2006.

Last June (the 26th to be exact) is the first time I stepped into the ocean waters since boogie boarding after my first brain radiosurgery treatment in July 2004. Prior, my last dive (scuba) was at Titlow Beach in Puget Sound (Washington) in March of 2004 just days before it was discovered that one of my tumors grew substantially and was in immediate need of treatment.

From the treatment I developed a vertigo in the water which prevented me from the water activities I used to love. Fortunately, I was able to overcome these challenges and enjoy my love of the sea snorkeling on a vacation last year.

It was absolutely MARVELOUS! I had so longed to back in the sea with the fish and marine life (in my element). The clear water, colorful fish, coves, and reef life were stunning. We had fun poking our heads into little nooks and crannies to see what surprise awaited us.

When we rounded a rock outcropping we came upon an interesting site which I have known about for a long time but have never witnessed. Sitting peacefully in the water were two large round cement structures with portholes covering the body of the spheres.

I became extremely excited of my find and swam around to inspect the new life growing on the structures which had probably not been laid there long (maybe only a year or two or even months old). It was interesting to see how a faint light blue and yellow fish with black stripes took on the duty of guardian of these great spheres. It was protector of all within the sphere and the new life growing on it. The sphere had become its "artifical reef" and home now.

I was so pleasantly pleased to witness this spectacular site and the new life emergining. It made me giddy and happy inside but also curious of how the spheres came to be and what was the story behind them.

You may also be wondering what these spheres were. They are actually part of an eternal reef memorial. I have know about them since I was in college (shortly after I became a certified scuba diver at age 19). In leu of a plot burial, a jar of ashes, or ashes scattered in the wind, one can decide to continue on with life and become part of a "reef". Hence "old life" gives birth to "new life" and the cycle continues on.

In fascination and awe, my mind weaved tales of their being. There were only two spheres. Were the spheres of an older couple who had once honeymooned there together? How romantic. It is unsual for eternal reefs to be placed alone in international waters. This particular part of Haiti is owned by an American Cruise Line which is private and only for cruise guests. Thus I wondered if this was a magical and memorable place for these two people where they wanted to be laid to rest and become something bigger (part of the whole).

Eternal Reefs: http://eternalreefs.com/

Atlantis Memorial Reef Project: http://www.atlantismemorialreef.com/project.htm

The nightmare

When I was a girl, I would sometimes have bad dreams so intense that it would take every bit of energy I could muster to reach over and turn on the light to escape the terror and pull myself out of dreaming and back into reality.

Well I have not experienced that physically draining of a bad dream since then that I can recall. However, the dream last night did not necessarily pull me into the reality I was expecting and upon waking I had a scary experience.

Here is the dream: I don't know much about it but I recall other people were living in our house or we were living in a house with other people. It was weird. We were living there because we were alike and had some kind of connection. Were we all brain tumor patients? I honestly don't know.

Somehow, somewhere I met someone who wanted to be a part of our group but the person had to escape from the people who were holding him. I cannot give you details because I can't remember. It was a strange situation. I agreed to allow this person into our group (to live at our house/compound/whatever it was). The person was to arrive that evening when it was safe to escape.

The evening came and I had told the others that this person was going to join us. I think they were leary and unsure about my decision. To my dismay, the person betrayed us. When time came for him to arrive, our house was under attack by a militia with guns!

I knew everyone would be upset with me. Harley was with me but sleeping through everything. Although I am deaf I could hear in the dream and know what was going on. I became very stressed and felt the pressure I experienced when having a nightmare when I was young. In my dream I pulled the covers over my head to hide and did not want to come out. It became so overwhelming to me I could not stand it and could not hide from my fear!

Then somehow with the desire to want to escape, I hoped it was a bad dream during an unconscious state and if I came out from the covers it would be over. Therefore, I mustered the courage to open my eyes and realized I was home in my own bed and room.
But it was not over. The pressure in my head did not stop. I was utterly terrified!

Did one of the tumors grow pinching my brain stem? Oh God the horror! I sat up hoping it would go away. I felt no pain but just this intense pressure that I am unsure how to describe at this moment. I rocked back and forth to comfort myself hoping that it would disipate. No do! Therefore, I decided I would take something to reduce swelling which may have been the cause of my current problem. The diamox was sitting on my dresser (medication I take daily) but I did not want to put my dosage out of wack on a prescribed medicine. The next best thing would be IB Profen.

I made my way downstairs with the pressure still knawing at my brain. Ok this is a good sign I thought as I was able to make my way out of bed without stumbling or falling. I continued down the stairs with no falls and no pain which provided me some sense of ease. I made my way to the kitchen and took 2 IB Profen and then headed to the couch to lie down and relax.

For a moment I wanted to get upset and cry internally but I reconsidered realizing that any further stress would increase the pressure or not help the situation. I focused on relaxed breathing and pictured my friend Laura in my mind of how she calmed me 2 years ago when I got upset at the beach. (Incidentally, from the moment on, I often picture her showing me to breath deeply whenever I get upset.)

Above the TV is a framed poster of the coast of Italy. It is very serene and peaceful. I focused on being in the beautiful and peacefull setting and my friend guiding me through relaxed and deep breathing. Within a few minutes it ended and I was able to go back to sleep. Phew!

Watch ESPN tonight June 26th!

HI!

Below is an email from Neurofibromatosis Inc. Northeast about an NF2 patient who was recently granted a wish from the "Make a Wish" foundation. ESPN will air a program where NF2 child Stephan meets with his hero David Ortiz.

I don't have cable tv but would LOVE to see the program. Please watch it and tell me about it! :o)

P.S.- to learn more about Neurofibromatosis, please visit the website (lighthouse icon in the post title) for the NF Inc. Northeast chapter.

Here are the highlights of their meeting:

Stephan Zepeda-LeColst – David Ortiz's Fenway Park Guest
Age – 12; Hometown – Middleton, Mass.; Condition – neurofibromatosis, type 2
Wish: To meet David Ortiz
Stephan, who had his own locker in the Red Sox clubhouse, met Ortiz for a personal tour of Fenway’s ‘Green Monster’

Email from NF INC Northeast:

Hello everyone,

One of our young NF2 patients Stephan Zepeda LeColst (age 11), was recently a Make a Wish child. His wish was to visit with David Ortiz who has been his hero since he was 3 years old because David is big and strong.
They met last week and ESPN will air a program about their visit on Tuesday 6/26. ESPN Sportscenter airs from 6-7pm ET each night, and then again from 11pm-12am and 1am-2am. It then reruns again six times the next morning. ESPN has also written an article about them which I have attached. (sorry, I could not get the attachment and include it here)
A humorous story about Stephan - the day before they were scheduled to meet, David Ortiz called him at his home in Middleton to introduce himself. Stephan (who has hearing loss) thought it was his neighbor playing a joke on him and hung up the phone. Big Papi thought it was very funny, and called back! As you will read in the article, they had a great day.

Karen Peluso, Executive DirectorNeurofibromatosis, Inc., Northeast*9 Bedford StreetBurlington, MA 01803781-272-9936
fax 781-272-9937cell 617-529-9562http://www.nfincne.org/* A Member of the National NF Coalition

What relaxes and calms me?

A: Being out among nature and watching underwater film footage such as the Blue Planet.

(Busy busy here so not much time to write.)

I love any outdoor body of water: pond, lake, ocean, quary, creek, stream, river, waterfall. I am fascinated by the movement of water.

When in Belize on our honeymoon (2000), we met another diver who was actually a hypnotist. He would use nature videography to calm and hypnotize people (for theraputic medical purposes). At the time I was dabbling in some very amateur underwater videography and Harley was starting his underwater photography career. We thought it would be a great idea to use underwater videography for relaxation! Even the surface above water has always had a calming hypnotic effect on me.

I remember the days when I could avidly water ski. Salom skiing was my favorite. I was entranced by leaning over and gleaning at the water. The fast pace of movement and percision made me imagine of being a powerful shark cutting through the liquid glass at high speed. I was also drawn by the foaming and bubbling of the water behind the boat's motor. It was glorious and dazzling in the sun!

I have not water skiied or dove (scuba) since before the radiosurgery. The treatment left me without the incredible sense of balance I once had. In fact, without my eyes open or a mask while in the water I get very disoriented and cannot tell which way is the surface (vertigo). However, I am still hynotically drawn to the water. It calls to me. Whenever I see it I long to jump in or at least touch it.

Last night when walking the dogs at Marymoor dog park, I decided to walk them to Lake Sammamish after one lap around the park. When we arove a sense of nostalgia and peace overtook my being. It completed the day by providing a satisfying reward by just seeing it. A herring flew above in the pink and lavendar lined clouds of the setting sun while the lake water gently weaved underneath the beautiful lilypads and white blossoms. In the distance we could see the reflection of the setting sun shedding a pinkish hue on Sauk mountain and a lone outboard boat with two fisherman lazily relaxing in hopes of an evening catch. It was so incredible that I did not want to leave but time had to pull us away as I had to get to get in some weight lifting at the gym before it closed.

Today I felt a little panicky thinking about the approaching date of my medical consultation and the thought entered my mind about maybe needing to cut off my hair for a surgery. Thank God I have a nice series of underwater videos that I can retreat to. I popped in the Blue Planet DVD "Seasonal Seas and Coral Seas" and immediately the microscopic Copepod environment enthralled me in interest and the gracefully swimming jellyfish put my mind at rest.

Now I can get on with the day.

Clinical Trial Study on Curcumin at MD Anderson

pdf file about fundraising study to use curcumin to treat NF tumors: http://texasnf.org/docs/MD_Anderson_Research.pdf

Well this is rather interesting. The actual cancer they are conducting clinical trials on using curcumin is Myeloma which my grandfather had as his second cancer.

So anyone out there with Myeloma (or Pancreatic) cancer, if you have run out of treatment options, there is currently a clinical trial being conducted at MD Anderson in Texas.

Here is the clinical trial study on the usage of curcumin for Myeloma. I will also include the link which you can access by clicking the lighthouse icon in my post title.

P.S. - clicking on the link above provides an easier to
read format of the study I pasted below. It will also bring you to the MD Anderson website for which you can view other clinical trials and treatment programs.


Study SummaryNo. 2003-0436:.......Myeloma......Saroj Vadhan-Raj......Palliative Care & Rehabilitation Medicine.
Study Summary Title
Study SummaryNumber:
2003-0436
Study Title:
Pilot Study of Curcumin (Diferuloylmethane Derivative) With or Without Bioperine in Patients with Multiple Myeloma.
Physician
New Patient Referral
Name:
Saroj Vadhan-Raj
Patients Call:
800-392-1611 (in U.S.A.) 713-792-6161 (outside U.S.A.)
Dept:
Palliative Care & Rehabilitation Medicine
Referring MDCall:
800-392-1611 (in U.S.A.) 713-792-6161 (outside U.S.A.)
Phone:
713-792-7966Contact us about clinical trials
.
General Information
Disease Group:
Myeloma
Supported By:
Sabinsa Corporation
Phase of Study:
N/A
ReturnVisit:
Every 4 weeks.
TreatmentAgents:
BioperineCurcumin
Home Care:
Curcumin and Bioperine are both in pill form, therefore, could be taken orally at home.
Treatment Loc:
Only at MDACC
EstimatedLength of Stayin Houston:
None for the treatment
Description/Intervention:
The goal of this clinical research study is to compare curcumin alone to curcumin given in combination with Bioperine in the treatment of multiple myeloma. The safety of these two treatments and how the disease responds will also be compared..
Study Objectives / Outcomes
(1) To evaluate clinical tolerance and response to curcumin alone and in combination with Bioperine in patients with multiple myeloma.(2) To compare the pharmacokinetics and pharmacodynamics of curcumin and curcumin + Bioperine and evaluate the effect of Bioperine on the bioavailability of curcumin.(3) To evaluate the biologic effects of curcumin alone and in combination with Bioperine on the expression of NF-B and related genes in the MM cells..
Study Status Information
Study Activation / Registration Date:
11/03/2004
IRB Review and Approval Date:
07/02/2003
Study Type:
Therapeutic
Recruitment Status:
Open
Projected Accrual:
N/A.
Enrollment Eligibility
If you do not meet the enrollment eligibility, there may be other treatment options for you. Please Contact the Referral Office for more information.
Inclusion Criteria:
1) Multiple myeloma patients who have been previously untreated, are asymptomatic and without serious or imminent complications, have relapsed or failed treatment with conventional treatment or progressed on no or limited maintenance, or are in stable partial remission.2) Bone marrow plasma cells >/= 10% and serum M-protein level >/= 0.5 g/dL and/or urinary Bence Jones protein >/= 100 mg/24 hr. When the bone marrow (BM) plasma cell differential is <10%> 1000/mm^3, platelet count > 100,000/mm^3, Hgb > 10 gms/dL), renal (serum creatinene <>/= 6 months.7) Effective means of contraception for women of child bearing potential.8) Women of child-bearing potential must have a negative pregnancy test.9) Ability to comply with study visit schedule and protocol requirements.
Exclusion Criteria:
1) Pregnant or lactating women.2) Previously untreated patients with high tumor mass, symptomatic or impending fractures, hypercalcemia or plasma cell leukemia.3) Patients with benign monoclonal gammopathy (MGUS) or non-secretory multiple myeloma.4) Significant cardiac disease, dysarrhythmia, or recent H/O MI or ischemia.5) Comorbid condition which renders patients at high risk of treatment complications.6) History of significant neurological or psychiatric disorders including dementia or seizures that would impede consent, treatment or follow-up.7) H/O curcumin or Bioperine supplement in prior 4 weeks.8) Patients on anti-convulsants, anti-coagulant treatment, or anti-arrhythmic medications for cardiac arrhythmia other than atrial fibrillation.

Good excuse to enjoy a weekend Indian buffet

Yesterday we decided to go out and enjoy the taste of tumeric and curry. Recently researchers at MD. Anderson in Texas have found the ingredient "curcumin" in many curries of Indian and Thai dishes to be effective in shrinking tumor in mice. Currently they are conducting clinical trials on cancer patients and are hopeful that it will be useful in shrinking NF2 tumors as an alternative form of medicine.


Tasty curry might have a fringe benefit
Updated 1/8/2007 8:13 AM ET
By Dibyangshu Sarkar, AFP/Getty Images

Former Indian model Divya Chauhan cooks a curry inside her kitchen in Bangalore, India. Studies have suggested that the spice could protect against heart disease, cancer and Alzheimer's.
_____________________________________________


IT'S THE SPICES THAT HELP YOU
Indian food offers many benefits, especially if dishes are prepared with a healthy oil such as canola instead of butter or ghee, says Alamelu Vairavan, co-author of the book Healthy South Indian Cooking. She recommends preparing dishes loaded with brightly colored vegetables, which contain natural disease-fighting substances called anti-oxidants.
Indian food typically contains curry powder or turmeric, which scientists believe contains a compound that protects against arthritis, Alzheimer's and other diseases, she says. Curry powder is a blend of spices that includes turmeric, a mild-tasting spice made by grinding up the root of the curcuma plant, she says.
Sample menu
• Appetizer Tuna masala served with sliced French bread
• First course Cauliflower soup
• Side dish Bell pepper and tomato rice with cashews
• Entree Chettinad chicken kulambu
• Side dish Cucumber and tomato yogurt salad
• Dessert Carrot halva
Source: Healthy South Indian Cooking by Alamelu Vairavan and Patricia Marquardt ($24.95 Hippocrene Books)
_____________________________________________

By Kathleen Fackelmann, USA TODAY
Five years ago Darci Jayne hardly ever touched a vegetable and pretty much lived on pizza, pasta and fast food.
That diet led to weight gain and health problems, including severe joint pain. "I was close to 200 pounds and getting scared," she says.
By cutting portion sizes she lost 50 pounds but always felt as if she were on a diet. Then Jayne took an Indian cooking class that emphasized fresh vegetables and curry spices.
She began to whip up an Indian dinner once or twice a week — and soon she noticed she wasn't always looking for a late-night snack. And the curry in the food offered her a bonus: It seemed to ease the pain and swelling in her joints.
"I have arthritis," says Jayne, 55. "But I'm moving better now."
Preliminary research suggests Jayne may be right. A study in the November issue of Arthritis & Rheumatism suggests turmeric, one component of curry spice, almost completely prevented joint swelling in rats with arthritis. Other studies have suggested that the spice could protect against diseases such as heart disease, cancer and Alzheimer's, a degenerative brain disease that afflicts nearly 5 million people in the USA.
Rates of Alzheimer's in India are about four times lower than in the USA, says Gregory Cole, a researcher at the University of California-Los Angeles. His studies suggest that curry contains a powerful substance that might protect the brain from damage that leads to Alzheimer's.
Surprising findings in mice
Can scientists prove curry wards off such diseases as Alzheimer's or cancer? Not yet, says Bharat Aggarwal at the University of Texas-Houston. But he says the growing file on curry includes compelling evidence gleaned from animal and human studies.
The findings from Western science fit with what traditional Indian healers have long said about turmeric. "They call it the spice of life," says P. Murali Doraiswamy, an Alzheimer's expert at Duke University in Durham, N.C.
For centuries, doctors trained in Ayurvedic medicine, a traditional medical system in India, have turned to turmeric to treat inflammatory diseases such as arthritis, says Janet Funk, a researcher at the University of Kansas. In the USA, many people with arthritis take over-the-counter supplements that contain curcumin, the active ingredient in turmeric.
In the November study, Funk and her colleagues gave rats that were bred to develop rheumatoid arthritis injections of turmeric. "The turmeric almost completely prevented the onset of arthritis," Funk says. The spice also seemed to help stop joint destruction in rats that had already started to develop the disease, she says.
Curry also may offer some protection against cancer. "Indians eat from 100 to 200 milligrams of curry every day, and that might be enough to prevent cancer," says Aggarwal of the M.D. Anderson Cancer Center at the University of Texas.
The curcumin in curry seems to shut down genes that trigger the development and the spread of breast cancer, animal studies in Aggarwal's lab suggest. And a preliminary human study suggests curcumin supplements might — in a handful of cases — be able to stabilize pancreatic cancer, he says.
Epidemiology studies in humans also have linked frequent use of turmeric spice to lower rates of breast, prostate and colon cancer, he says.
Large clinical studies still needed
Other research suggests curry might shield the brain from Alzheimer's, Cole says.
The studies on curry and Alzheimer's include:
•A test-tube study by researchers at UCLA in October showed that curcumin could help clear the human brain of toxic protein deposits thought to cause the memory loss and confusion of Alzheimer's.
•A study of more than 1,000 older men in Singapore last year found that those who ate lots of curry-spiced food did better on memory tests than those who rarely ate the spice.
The findings from Singapore suggest curry may help keep the aging brain in top shape. But to get the proof that curcumin fights cancer or Alzheimer's or arthritis, researchers will have to conduct large clinical trials, Cole says, and those studies will be expensive and take years to complete.
Americans don't need to wait for the proof on curry to enjoy a diet that includes more of this spice, says Alamelu Vairavan, co-author of the book Healthy South Indian Cooking. "You don't need to gulp supplements," she says, adding that cooks can find turmeric in Indian specialty shops and in most grocery stores.
Americans should give Indian food a try, Vairavan says. "This kind of food is very tasty and satisfying."
Eating more Indian food has worked for Jayne, who lives with her family in a small town outside Milwaukee. A family physician who recently retired because of disabling arthritis pain, Jayne says she knows there's no hard evidence of curry's health benefits. But that won't stop her from enjoying a lunch of tuna masala or an Indian stir-fry for dinner. She says the food seems to warm her joints and helps keep her in a size 8 dress.
"You can't argue with success," she says.

Nuff Said! -pun intended ;o)

Positives

Everyday the challenge is to find the the good no matter what life throws at you.

Good moments today and the past few days:

When I was struggling with dispair and hope while fear began sinking in, I read that Sean Swarner is back on the mountain (Denali) and will "Keep Climbing" to achieve his goals and be an inspiration for the cancer community.

To read his journal and follow his journey go here: http://www.cancerclimber.org/climb.html

I discovered that my long time friend has found someone truly special and is engaged! Congratulations Joanne and Travis!
To see photos of their spectacular sailing journey and where Travis proposed, go here:
http://picasaweb.google.com/joannedelorme/Providencia

I am blessed with a wonderful and supportive husband who is always there for me. We have had many good times together and our life is always full and an interesting journey.

My dogs (even though almost 6 years old) are still as cute as puppies and bring a smile and much joy to my life everyday.

Last night I was able to stand on the BOSU ball trainier for over 5 minutes setting a new personal record!!!!!

The other day on a walk with the dogs, we saw a fantastic site! We witnessed a large bird which I assume was a majestic Great Herring at the pond for the first time this year. On the same walk there was a fresh rain that cleared with the sun breaking through the clouds. The aroma of the fresh earth and grass reawakened my spirit as I inhaled the breath of living.

A few days prior when we were out for our walk on the same trail, a lovely couple bird watching and taking pictures stopped me to show their wonderful discovery. Even though I am deaf, they were still interested in communicating (the man knew how to fingerspell) and pointed out the very RARE site of an American Bittern which I have never seen in the wild before. If they had not been so kind and eager to share their discovery, I would have missed the opportunity.

Saturday was nice and I had the chance to visit one of my places of refuge here at the Bellevue Botanical Gardens. The blooms and perfection of landscape are just lovely! It is an art I truly appreciate mostly especially because I do not have a green thumb! It is nice to have such peaceful places nearby to visit. As an added bonus, Harley surprised me and showed up. We had text messaged each other as we had different agendas that day and I thought he was in a complete different location. LOL While taking a photo of some gorgeous rhododendron trees, he came up to me from behind! hehe ;o)

Here is a quote that has instilled inspiration and hope for me today. I have read it before but it left my mind and today was a perfect time to revisit it!

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face…You must do the thing you think you cannot do.
- Eleanor Roosevelt

Incredibly Humbled I

Wow! You know how I just posted this morning about my feats of accomplishment standing on the BOSU ball? Well when I did a search for it I also came upon this site where they use the BOSU ball for sports condition training.

LOL I must look like a dang fool compared to what they are doing in the short video on this site! I am quite literally blown away!

Check out the link I have included by clicking on the lighthouse in the post title. OR if that does not work for you, past the following into your browser to view the website for TWIST CONDITIONING INC. - the sport conditioning specialists:
http://www.sportconditioning.ca/

The small video automatically appears when you open the page and is not at all boring. It is very fast paced and almost makes my head spin.

About Sports Conditioning from the BOSU site:

Sports conditioning, by its nature, is dynamic. The qualities of sports movement that can be trained with BOSU® Balance Trainer include endurance and power, cardiovascular conditioning, agility, balance, proprioception and flexibility. You can accomplish specific transfers to almost any sport through a variety of static balance exercises and dynamic balance drills. The variations are almost unlimited. One, two or multiple BOSU® Balance Trainers can be used to set up drill patterns for sports goals.

Here is another site I found with the BOSU balance trainer
http://www.wtnh.com/global/story.asp?s=1367599&ClientType=Printable

(WTNH, July 20, 2003) _ It's hard to believe that bouncing on a squishy half moon shaped ball can actually get you in shape. But, it can! The new form of exercise is called BOSU. From rehabbing a reconstructed knee to setting world records, BOSU allows you to find your "point of challenge" and develop beyond that point.
A local aerobics instructor will be here to show us how to do it.
Watch the interview
For more information on BOSU Balance Training: http://www.bothsidesup.com/.For more information on Club Fitness: www.guilfordfitness.com/index.cfm

Red Hot Poker!

If you are in your 30s like me, you may remember from MTV in the early 90s, the hyper blond actor that would seem to have a stress attack on camera. He would get uptight and his slogan was the feeling of "a red hot poker".

Well this morning I feel like I have a searing red hot poker in my good eye!

Here is how it goes: with NF2 I cannot produce tears or enough to actually cry. In addition, the eye lid of my right eye (the side which I have experienced facial paralysis on) does not actually close fully when unconscious (sleeping). Therefore at night I have to use Refresh Gel Drops in my eyes and wear an eye mask (obtained from an airplane trip in 2004) to keep my eye closed. Most people with NF2 tape their eye shut but I have not resorted to that as I get up many times a night to use the restroom. If my eye was taped shut I would have to remove it and reapply it each time while not fully awake.

The result is that I wake up in the morning with irritated eyes most often one of which is completely pasted shut (the left good eye) and the other not fully pasted shut but crusty. I need to use the restroom immediately upon waking. Hence my eye mask sits on my head and I use the one eye (the poor one) to stumble my way to the bathroom.

Normally I could take time to readjust by putting Refresh Tears on my eyes (which are thinner to loosen the dried gel). This would take a transition period though and I don't have that kind of time when I wake. My urge is immediate. If I can consciously become aware fast enough, I splash some tears on my eyes and hurriedly make my way to the restroom trying not to take off a shoulder, trip, or break my arm when I sit on the toilet seat (I often have to reach out and grab the floor to keep from falling).

After my relief is the time when I make the routine of splashing warm water (or using cold while waiting for the water to heat up) on my eyes to unpaste them. Sometimes when the water warms I use a hot washcloth compress on my eyes and lie back down to let the warm dampness unglue them. However, I have been known to fall back asleep when I do this.

In all it probably takes me a half hour to an hour to adjust to the vertical world from hours in the horizontal. Yes this is a rather significant transition and important daily ritual for many people with NF2 before they can function for the day.

Back to the searing hot poker.........Somehow something went wrong and happened to my good eye that gets pasted shut. I awoke with burning pain in that eye. I recall getting up during the course of my sleep to use the restroom. When I awoke very early this morning I noticed that my lower lid was dried hanging open a little (kind of if you slightly pulled your eye lid down to look for a hair in your eye). At that time I noticed I was half awake and disoriented. I think I splashed water on my eyes to get the gel off. Then I returned to bed and I THINK I reapplied the gel drops to both eyes and put on my eye mask. I really can't remember nor can I remember from when I woke up as the pain distracted me.

My right eye seems fine. Yet my left eye burns really bad and I have applied water rinses and several tear drops to try to wash it out. I thought maybe a hair got stuck under my eye lid.

Upon inspecting my eye with a flashlight (I cannot do this with the right eye), I noticed that it was all blood shot. The little red aggravated capillaries covered the white space of my eye ball. I could find no hair or debris. The only thing I can figure is that maybe one of the hard crusties fell it my eye and scratched it! I have scratched the cornea of my other eye before and the pain does feel similar.

WONDERFUL! THESE ANNOYANCES OF NF2 DO NOT MAKE FOR A PLEASANT START TO THE DAY!

I have gained minor relief by reapplying gel drops to that eye and lying down for a few minutes. It has improved and I can see out of it but it is sore and giving me dull head pain on that side of my head.

If I use the ointment not only will it blur my vision, but the ointment has caused a slight burning irritation in my eye in the past.

So for now and for this morning or maybe even today, I guess I will have to contend with a "red hot poker".

Click on the lighthouse in the above post title to see the Refresh brand website and find out what "dry eye" is.

My Balancing Act

It's a flying saucer! Look out! LOL No the above photo is actually my latest toy device at Gold's gym. It is called a BOSU (both sides up) balance trainer. It is like a swiss balance ball cut in half and mounted on a hard plastic base.

Apparently there are several exercises you can do with it (what I would consider extremely difficult and advanced....not sure if I could ever attain some and others I know I cannot). However I just try to simply stand on the thing.

I remember the first time Harley was showing off and jumping up and down on it while I had extreme difficulty just maintaining 5 seconds of stationary standing without falling off. Yeah I have walked a marathon and climbed the tallest tower on the west coast but I just make you think things are easy when actually they are not. My legs are continually bruised from falls in just normal daily life and I have fallen down the stairs bruising my tailbone and most recently spraining my other ankle (I sprained the opposite one when I came home from treatment in summer 2004).

Anyhow, I am really proud to say I have gone from finding it extremely challenging to stay on the device for 10 seconds to my recent accomplishment a couple days ago of staying on for over 5 minutes.

I had a major breakthrough the day I climbed the Columbia Tower and met the Ershlers. After the climb I decided to stop off at the gym and workout seeing as it only took me 15-16 minutes to climb the tower. I had no idea really how long it would take to climb the tower as the Seattle marathon lasted hours to complete.

For a few weeks of practicing over and over again, I just could not seem to exceed 10 seconds and actually averaged 5 seconds as many tries resulted in 3 seconds before falling off. I was so elated after the tower climb that I was in a very determined mood. I am not even sure how many practice attempts it took me. I figured out that focusing on the striped colored wall in front of me helped immensly compared to a plain white wall with people walking past in my side view.

The stripes were large so I focused on the border between them that was near eye level. Then I noticed a few light scuffs on the wall in front of me and focused really hard on them until my eyes were not bouncing so much. My legs shaked as if they were about to crumble. I pictured the image of Susan Ershler's face and envisioned her telling me I could accomplish this feat. Finally after 150 seconds (yes that zero really is meant to be there) I released from the device happy and feeling "On Top of the World". What a great day! Not only did I climb the tower but I also drastically broke my measily 10 second record with an astonishing 150 seconds!!!!!

Now some people may observe me with strange curiousity or you yourself may wonder what the fuss is all about. For some, they would question why I was having such a struggle. I have to admit that I would have been one of them before losing my balance. Now I understand.

Often when I go to the gym, this is one of the balance activities I have been working on improving. About 6 weeks ago I broke my record again and almost made it to 5 minutes (I think it was 4 and a half). Yet when I came home it after dark, I got disoriented in the driveway and fell twisting my ankle badly and landing on it. Frustrated that my foolish foible would interupt the strides I made and hard work I had accomplished, I knew I would have to start again.

Fortunately I did not have to go back to the drawing board. I abstained from practicing on the BOSU trainer until my ankle felt a little stronger. After two or three weeks I could not contain myself any longer, jumped on one day and accomplished 2 minutes after some practice. Sunday night I accomplished over 5 minutes but I noticed the device I was standing on was re-inflated to its maximum capacity. I am not sure if this makes it easier or if my balance is actually improving. I will have to test out the difference tomorrow night.

About the ankle......Here is how it happened and something those of us with NF2 or balance challenges deal with DAILY!!! I should have known better really. As I said, I came home at night (dark out) when it is important to be more cautious as those of us balance challenged have a hard time with less light. (The best I can describe this is the difference between day driving and night driving...your perception and reflexes to situations drastically change. Now imagine having night blindness on top of that.)

I got out of my car at home not thinking in the right frame of mind about needing to be more cautious. My hair should have been tied back and it was not. I leaned down to pet the dogs and my hair fell in my face resulting in wild disorientation. I had no sense of direction (succumbing to a sort of land type vertigo). As I began dancing around to avoid falling and to get my bearings I twisted my ankle. Then the final icing on the cake was my heavy gym bag sliding off my right shoulder and causing me to come crashing directly on top of the twisted ankle.

It was excrutiating pain! The dogs were dumping on me and licking me all over my face as they worried about me hurting myself (they tend to do this when I hurt myself or I happen to be sad). LOL I am just editing this now and realized what I wrote here!!!!! ROFL I meant to say that my dogs were "JUMPING" on me and not "DUMPING" on me! Eeww! Gross! I am sure glad I have to ability to laugh at my foibles! ;+)

For the first few days I did not go anywhere as I had injured my right ankle. It hurt too much to drive and was painful going down the stairs. Five or six weeks have passed but it is still swollen (larger than the other one) and hurts in certain positions or just plain bothers me to the point where I feel like pulling it off my leg.

Yes I had it looked at 3 weeks afterward, but the doctor did not want to do xrays and said this was typical for a sprain. As a result, I have had to cease my running that I was making improvements in (was hoping to run some 5 Ks this summer and work up to a 10K). I also stopped going to the water aerobics which I have really enjoyed and is good for my balance as there are certain moves or running in the pool which would cause the wrong kind of strain on the ankle. If it is doing better I can commence running in July. Perhaps I will try returning to water aerobics next week.

What else have I been doing to keep active and work on balance? Well fortunately I can still walk without my ankle bothering me. Last week I tried running for short spurts and took the next day off completely. I have also been back to lifting weights this year as I am trying to gain back muscle strength that will help me improve my balance. In addition, there is this machine I really like developed by Cybex which takes impact and jarring off the ankles. It is like a combination of running, cross country skiing, and stair climbing. It is great!!!!

By the way, check out the link to find out more about what a BOSU is by clicking the lighthouse link in the post title. It is cool!

The Daily Press article and I with the Ershlers

Here is the news release article that ran in my hometown newspaper in Escanaba, MI. I am pictured with Susan and Phil Ershler who are featured in the article as the honorary co-chair people of the event.

Phil and Susan are mountain climbers and the first couple to summit the highest peaks on all seven continents together. Phil is also the first American to have climbed Mt. Everest and an amazing 3 time cancer survivor. You can read about their life journey in their new book titled "Together On Top Of The World" which was released in stores April 2nd.

Special note: THANK YOU ALL who have donated to my fundraising efforts, have encouraged me, sent me well wishes and congratulations, and who have believed in me by showing your acknowledgement and support. I could not have accomplished these feats or gotten as far as I have without your love, hope, faith, and prayers! Thank you! You are my motivation and driving force! :o)

Sincerely from the deep recesses of my heart and soul, Rebecca

2007 Big Climb for Leukemia

Former Escanaba resident Rebecca Dufek to scale tallest building west of Mississippi at Seattle’s Big Climb for Leukemia

Climbers ages 8 to 82 to climb tallest building west of Mississippi for Leukemia & Lymphoma Society

ESCANABA, March 13, 2007 – Rebecca (De Grand) Dufek will join famed climbers Phil and Susan Ershler, the first couple in history to successfully climb the famed Seven Summits – summiting the highest mountain on all seven continents – as they battle life-threatening blood cancers Sunday, March 18 at Seattle’s 21st annual Big Climb for Leukemia.

A 14 year survivor of Hodgkin’s Lymphoma, Rebecca, 35, will climb in honor of her grandfather Clarence De Grand who lost his battle Myeloma cancer last August. This will be Rebecca’s first year in the Big Climb event. In 2006, Rebecca was a member of the Leukemia and Lymphoma Society’s Team in Training program which trains participants to complete a marathon while raising funds for blood cancer research. In November Rebecca finished the 26.2 mile Seattle marathon course in memory of her grandfather.

The annual climb to the top of the tallest building (by stories) west of the Mississippi raised $465,000 in 2006 to fight blood cancers. Along with the Scott Firefighter Stairclimb, March 4, the Big Climb for Leukemia is one of two Seattle climbs benefiting the Leukemia & Lymphoma Society this March.

“When I first learned about the Big Climb I thought it was a great idea! Not only is it a personal pursuit but a meaningful purpose towards a worthwhile endeavor I believe in,” said Rebecca. “Each step I will be reminded of what I and other blood cancer patients have or are going through. It is that reminder which will help drive me to the top.”

Beginning at 8:30 a.m., climbers will sprint-climb 788 feet in vertical elevation (1,311 stairs / 69 stories) from the Fifth Ave. lobby level to the 73rd floor observation deck of the Columbia Center. At 943 feet tall, the Columbia Center is about one and a half times the height of the Space Needle.

Like many competitive fun runs, both competitive and “fun” categories are available to accommodate all ages and abilities with individual climbers and teams vying for best time in six age categories and most funds raised. To make a donation to fight blood cancers in support of Rebecca’s climb, please visit her fundraising page at www.active.com/donate/2007bigclimb/bc07RDufek .


“Sometimes things are destined to be,” said Phil Ershler who along with his wife Susan will co-chair the Big Climb. “I’ve been treated for two different cancers – one just prior to heading for Everest in 2002, which delayed the quest, and the other just after the climb,” said Ershler, who has also seen his Ecuadorian goddaughter and a Whitman College classmate both survive their Leukemia diagnosis as well as losing his friend and Mt. McKinley climbing partner, the famous Iditerod winner, Susan Butcher, to the disease this last year.

“Surviving cancer means a second chance at life,” said Ershler. “This is possible, in part, because of research funded by events like the Big Climb for Leukemia. “Sue and I are honored to play even a small roll in the ongoing efforts of the Leukemia & Lymphoma Society.”

More than 747,000 Americans have leukemia, myeloma or lymphoma, the most common form of blood cancer. Among children under 20, leukemia causes more deaths than any other cancer. In 2006, an estimated 2,640 Washingtonians were diagnosed with blood cancer and an estimated 1,150 lost their battle with the disease.

For more information on the 21st annual Big Climb for Leukemia, please visit http://www.bigclimb.org/

About TOGETHER ON TOP OF THE WORLD
When Phil and Susan Ershler reached the top of Mt. Everest, they became the first couple in history to scale the fabled Seven Summits. TOGETHER ON TOP OF THE WORLD is the story of their journey—through life-threatening illnesses—to the highest mountain on every continent, to the extremes of elation and despair. It is a love story, an adventure story, a story of success against all odds. Above all, it is the story of two people who refused to back down in quest of a seemingly impossible dream. TOGETHER ON TOP OF THE WORLD by Phil & Susan Ershler with Robin Simons will be available at the Big Climb for Leukemia and in book stores April 2. A portion of the proceeds from copies of TOGETHER ON TOP OF THE WORLD sold at the Big Climb for Leukemia will benefit the Leukemia & Lymphoma Society.

About the Leukemia & Lymphoma Society
The Leukemia & Lymphoma Society®, (http://www.lls.org/) headquartered in White Plains, NY, is the world’s largest voluntary health organization dedicated to funding blood cancer research and providing education and patient services. Since its founding in 1949, the Society has invested more than $424 million in research specifically targeting leukemia, lymphoma and myeloma.

The Washington/Alaska Chapter (www.lls.org/wa) is one of 66 local chapters across the US, with additional branches in Canada. Located in Seattle since 1984, the Washington/Alaska Chapter is close to the treatment facilities where patients and families come for lifesaving therapies. Major, annual fundraising campaigns include Team In Training®, Light The Night® Walk, School & Youth Programs, the Scott Firefighter Stairclimb, the Big Climb for Leukemia and The Leukemia Cup Regatta.

www.lls.org/wa

I climbed to the top of Seattle on March 18th!

Photos were taken by Big Climb for Leukemia participant Laura Cunningham at the top of the Columbia Tower (former Bank of America Tower) in Seattle, Washington on March 28, 2007.

Since I first heard of people climbing the tallest skyscraper in Seattle as a fundraiser back in 2004 or 2005, I was interested in partaking in such a feat some day. In 2005 I was still sick and in 2006 I took a trip out to Michigan with my dad to visit my grandpa. Thus after completing the marathon in November and my balance improvements this seemed to be my year and my chance to take a shot at it while I am still able.

The event is known as "The Big Climb For Leukemia" which is a fundraiser for the Leukemia and Lymphoma society to reach for their mission of curing blood cancers and providing better treatments and education for patients and their families. In addition to having NF2 I also was hit with a blood cancer at the age of 21 years old known as Hodgkin's Lymphoma.

Pictured here I proudly wore my Team in Training jersey from the Seattle marathon in November 2006. Written on the back of the jersey says "I am going the distance for "Grandpa Curly". In August my grandpa passed away from another blood cancer known as Myeloma. Climbing the tower I was able to get closer to him and like the marathon put reason and purpose to what he and I have been through so that our experience may help others.

In case you do not know, pictured in the background of the above photos are the Seattle Harbor, Puget Sound, and the Olympics Mountains. The guidelines said I could not bring a camera but fortunately I found someone at the top who had one and was kind enough to snap a few photos and email them to me.

From the top I looked down and could see the entire route I traversed in the marathon. It was a thrilling experience to see it from that perspective, to have some quiet moments to reflect on how I came to get to the top of the tower finally and to pray and thank God for being so gracious to me and to thank those who I have lost but are still with me and close at heart.

Below is a letter I wrote after the climb and sent out to family and friends from where I am from.

Yesterday was a successful event! I had no idea really how long it was gong to take me and when I started I surprised myself. It took me about 15 to 16 minutes to climb 69 floors of the tallest skyscraper in the city and on the west coast!

I had never been to the Columbia Tower before (same nunber of steps as the Sears tower in Chicago). I envisioned a big wide scary stairway with lots of people pushing and shoving their way to the top. There were quite a few (maybe 50?) that had the same start time as me but they formed a line and released us in pairs or groups of 3 at time intervals spaced apart.

To my delight, the stairway was the most ideal stairway I could have imagined! It was narrow enough that I could easily put both hands on the hand rails on either side and I had enough room to pass people and hang on to the left side hand rail.

The experience was so thrilling! I never wanted to stop (except I had to a couple of times to take a drink of water).

I was additionally elated to discover that my mentor from the marathon was at the event and to also meet and shake hands with Phil and Susan Eshler who are the first couple in history to climb the 7 highest peaks in the world!

Ok. LOL Enough of my babble already! Thanks for all the good wishes. They really motivated me!

Attached are photos of me taken by another participant (Laura Cunningham) at the top of the Columbia Tower. Puget Sound and the Seattle harbor can be seen in the background. It was too cloudy of a day to see Mt. Rainier and the Cascade mountains but in the one photo you can see a peak of the Olympic Mountains beyond the waters of Puget Sound.

Enjoy and have a great week!

Love, Becky

Weird...new blog changes

Hey I am still here! I have been on a busy hiatus. In fact there happened to be lots of changes since I last wrote which required me to get a google account. So if I happen to go missing in action again, it may just be that I got confused on the new system and forgot how to sign in.

Alright. Let me back track and give you the great news from March in another post.

Be prepared to read a few posts to get caught up! ;o)

Evolution of a Face - 2 year journey through facial paralysis

Upper photo: onset of facial paralysis on December 14, 2004.

Photo on left: self portrait taken in the upcountry of Maui in January 2007.

Photo on right: Valentine's dinner cheers taken by my husband Harley on February 14, 2007.

The photo on the top is the night I was hit with the onset of facial paralysis exactly 6 months after cyberknife radiosurgery for the right side vestibular schwannoma (brain tumor: AKA an acoustic neuroma in an NF2 patient......NOT an AN patient....the difficulty in treating the tumors are different between the two kinds of patients).

The reason I experiened facial paralysis months after treatment is that the tumor swelled (for a period of 10-11 months) and hence pressed on the facial nerve as well as my vestibular and optic nerves.

In the photo my face is swelled up to its maximum (so much so that it hurt) from the steroids. In addition, if you look closely you will see that I have lots of acne in that photo. It is a common side effect of the steroid Decadron which I had been taking to reduce the swelling and combat some of the side effects of the swelling tumor (dizziness, vertigo, vomiting, etc.).

The other two photos are more recent pictures of me taken in 2007 where you can see some changes. Although it does not occur for everyone, the facial nerve in some cases (if not severed through surgery) does have the ability to regenerate very slowly. It appears that I may have been one of those lucky ones for the time being. However, I have not achieved 100% function of my face back. (Truth be told I kind of picked some good photos to show you).

In January/February of 2005 a facial nerve test performed on me revealed that I lost 50% of my facial function on the treated side. The paralysis not only discouraged/depressed me in the department of my vanity but it also caused eating, drinking, swallowing, dental and chewing problems from numbness on that side and decreased saliva production, loss of tear production, problems with simple facial movements (I still cannot blow up a balloon!), and problems with my eye on that side as the eye lid does not fully seal while sleeping. Shortly after the paralysis I had to become adjusted to this weakness and scratched my cornea as I did not have the strength to close my eye lid tightly to protect the eye. As soon as the scratch had healed I nearly scratched it again while rinsing my face after using facial soap that contained cleansing beads.

During this time was a very low point for me and the only reason I have the photo above is that I wanted to show the medical staff where I was treated in California what happened. I tried very hard for a solid year to avoid having my photograph taken and releasing them. I have more that I finally feel brave enough now to post. I need to find where they are all stored on the computer and file them into flicker.

The first time I saw the original facial paralysis photos from December 2004 is when I was in Arizona in October 2005. They were on my husband's laptop and we saw/found them while uploading some of our travel photos to see. It was a horid emotional shock for me as I did not recognize myself. To me I appeared a monster and it reminded me of the difficulties I had been through unexpectedly over the last year. I nearly broke down in hysterics but at the time I was able to get a grip.

Although my face has not been restored to what it was before treatment, for the most part I am comfortable with its present state and enjoy it while I can. I know that everything is fragile. You never know when your blessings and luck are going to turn. Since a month or two before the marathon, I have been experiencing small bouts of my face "locking up" on me. This happens if I am tired, have not had enough sleep, am stressed, and sometimes it seems for no reason. The face will twitch and freeze into a pose for seconds to a minute like a bad botox nightmare. I get anxious when this happens and start contorting my jaw around and massaging my face in deperation for it to unlock. It eventually returns and I think "Phew! Luck was on my side this time but what about next time?" LOL Ok I will be honest...sometimes I am pleading "God please don't let it happen again. Please let me keep my face. "

Anyhow, I wanted to post this topic and the photo on December 14th of 2006 but wouldn't you know we had a storm that day and lost power for 8 days. Recently the topic of facial paralysis has come up again within the NF2 community as almost ALL of us have it.

The question posed was whether facial nerve stimulation helps? Anyone try that? You do not have to have NF2 to share your wealth of knowledge. I am willing to learn whatever anyone knows about it. If you don't know but would like to research it for me, THAT WOULD BE MOST WELCOME AND WONDERFUL!! (hint, hint). :o)

Of particular interest to myself, I am very interested to know of what anti-wrinkle or wrinkle correcting products have worked for you if you have tried them. After my face shrank post steroid use and I lost some weight, my face has become wrinkly as it was very stretched out. I was hoping that it could bounce back but alas I am in my mid-30s now and time is persistant on continuing to weather my face.

Here I am.

It has been a long time I know. After the large windstorm that knocked out our power for 8 days, holiday travel, disabled internet access for 3 weeks due to the damaged cable lines, and a trip off the mainland, we are here and back online finally. Actually we got home last week and the remainder of the snow that blew in over Seattle is nearly gone out at our place.

No I have not had writer's block. In fact I had so much t0 talk about that I have been left feeling overwhelmingly behind to a p0int where I do not know where to start. To be honest my brain has been on maximum overdrive and I hit a spell where I just felt burned out and like vegatating my brain with a "24" episode escape (all episodes on the 3 netflix disks of the last season).

Now it may sound completely ridiculous to you and you may wonder how in the heck I could be burned out ESPECIALLY after I just came back from a vacation. Well I will tell you.....

This week I was wondering what in the heck is wrong with me and feeling that I have been caught up in a lazy state. Everyday I seriously pray to be a productive person and to get everything done.

Then tonight I stopped to think about it. My brain is continually firing and problem solving. For a short bit I was thinking it such a shame to have all these problem solving skills, education, and knowledge to not use it. Then I realized that I use and RELY on these skills and instinctual abilities everyday. It is how I survive.

A couple months back I was cooresponding with another friend with NF2 who recently ran a half marathon and has been a very athletic person throughout his life. He wrote to me "Everyday is a training day." Wow! He is absolutely right!

Just because a marathon or athletic event has ended (or a surgery or treatment is complete) does not mean training is ended. From the time I wake until the time I go to bed, it is practice, practice, practice. First it is practice getting out of the bed without falling over and bumping into things, then it is unpasting my eyes from the eye gel that keeps them closed at night and from drying out, then it is reorienting the eyesight (if one has hampered vision) so that I can balance and see, then it is getting used to walking in the vertical world after hours of resting in the horizontal world. Basically, it is a quick evolution of the body within a half hour or hour in order to adapt and function in the physical earthly world.

Those are just minor adaptations that those of us with NF2 get used to as the daily routine. Once hitting a state of consciousness I have found that I must try my best to always be mentally and evironmentally aware of my surroundings and what is happening. This is where the mental game of problem solving really kicks in.

Some things range from simple problem solving to very complex and life dependent.

Simple: I am going to an environment with most if not all hearing people. Thought: Is it a situation where I will need an accommodation? Will it be a place which offers an accommodation? Who do I contact and how far in advance? If it is a party or small get together and there is no accommodation, how will I communicate with people? How will I enjoy myself if nobody communicates with me? Do I have pen and paper ready? How do I get around people not believing I am deaf because I can speak? What if people do not write and keep speaking to me? How will I handle myself? What do I do? What if everyone is talking and I am bored?

Unforeseen situations (more complex): A cop confronts me in a parking lot, does not show identification, does not write to me until after several requests, does not believe I am a person with imbalance due to brain tumors and is convinced I am a drunk. What are my rights? Is there somebody around to help me and be a witness? How do we reach a resolution in the situation so that I am not falsely accused and I can go home?

I am walking my dogs or in a situation where I was planning to be alone. I bump into a person who wants to communicate and I am not prepared with pen and paper. Believe it or not it has happened and when I trained for the marathon I started carrying a small paperpad and pen in my hiking pants.

Very complex and requires prior thinking and preparation:
The plane is unusually turbulent and we are flying over the ocean. I am the only person who cannot hear and I have a major balance problem. In this particular case which I never considered prior, I decided it would be a good idea to read the instructions on where to find the life preserver, how to put it on, what to do in the emergency, and where to exit the plane. In the case of being in the dark and possibly entering the water and becoming disoriented, I had to think through what I would do and visualize the scenario.

Very complex (life dependent at the moment):
I am snorkeling and the water is a little wavy which is throwing me around (probably mild for other people). My mask is fogging up and I cannot see so I try to rinse it out on the surface and get salt in my eyes. When I shut my eyes I become disoriented even though I am wearing a snorkel vest. I end up with my head under the water and swallowing lots of salt water through the snorkel. I have a moment that I feel I am drowning and then a voice clicks on in my head "FIGURE IT OUT!" Due to prior experience and comfort in the water, I prevent myself from panicking and find a way to right myself and correct the situation. This was an interesting lesson that I feel I need more practice with and learned to adjust within a couple hours of the activity.

These are just some simple examples but I have found that everything I do takes prior thinking and preparation.

Walking and Hiking:
Is the trail uneven? Is it a difficult trail? Am I able to do this walk/hike?Can I do it with a hiking staff only? Do I need hiking poles? Is it slippery? Will we be walking around when it gets dark? If so, I definitely need to remember to bring my hiking staff (AKA - my cane) and head lamp.

Eye drops - always have to have them.

Pen and paper - always need unless I am in the company of all deaf people who sign.

Harley was recently disappointed to discover that I cannot get an accommodation for absolutely everything. I have known this for some time and although it is a bummer, it is just something that needs to be accepted. Yes every so often I see privately held classes on things such as gardening, photography, presentations on travels abroad, cooking, etc. held at community centers or hospitals for a very minimal fee or free. Some things I would have really liked to have gone to but I must choose to go to the things that are accessible.

I think prior to treatment I had a fantasy that there would be an end or finale such as completing a college degree. I dreamed that I would be restored back to where I was before. I probably thought this as when I had cancer I was one of the lucky ones. I grit down and beared the treatment, made it through, recovered, and went on with my life to do many things. With NF2 it is an evolution to become more adaptive in order to go on with life. One has to make a choice to accept the situation and decide what needs to be done to attain the optimum quality of life available.

I think I have come a long way, but still in the back of my mind I am holding out for that finale and completion. Reality that over 2 years has gone by now and that I need to keep going and pushing has creeped in my mind this past week. Thus the orgination of my overwhelming feelings and slight moment of burnout or wanting to mentally escape. Somedays I am still waiting to graduate from NF2 University where every day is a training day.

Where in the world is Rebecca??????

Hi! Merry Belated Christmas and Happy New Year!

Our power was restored last Thursday evening but we are still without internet access presently. I am at a library at a nearby town and need to leave so I will make this short.

We traveled down to Veneta, Oregon to spend Christmas with my parents and sister. Friday we got caught in the most horrific rain the whole drive down. We drove back up yesterday afternoon/evening and got poured on again! I swear they were the largest rain drops I have ever seen!

Shortly after we returned home the rain turned into snow. A friend staying with us left to spend the night at work and phoned to inform us that another tree had fallen across the road but he was able to drive around it. Hence I did not leave the house all day until it warmed and the roads were better. I am hoping that the weight of the melting snow is not going to bring down more trees and knock out our power again.

The wind storm last week brought about 5-6 trees down on our property (2 of the trees were very large and tall hemlocks). Fortunately the wind blew them in the direction AWAY from the house! It was a really nice Christmas present to have power restored after 8 days without.

Ok. I gotta go. No internet, tv, or news while living in the sticks so I cannot check the weather forecast. If you need to get a hold of me right away you can call WA state relay for the deaf at 1-800-833-6384 and then provide the operator my home phone number. Leave a message and I will try calling you back. You can still email me and I can read it when I am somewhere with access. I just cannot type back as I need an ergonomic keyboard like I have a home. Laptops are IMPOSSIBLE for me to type on (complications from NF2 which have compromised my dexterity and left me with numb finger tips which make me feel as though I have club fingers).