Monday, April 28, 2008

What happens in Vegas, Stays in Vegas

Gosh. We are counting on that phrase to be true. Amazingly we have traveled many places, to foreign lands, and even third world countries yet we ended up becoming the sickest when visiting the modern amenities of Las Vegas, Nevada.

Yep! That was no fun! Despite the fact that we are not drug users, smokers, stoners, or hard core partiers, we spent hours with vomiting and diarrhea at the same time. I became so weak from dehydration that I collapsed on the bathroom floor and awoke a few minutes later with a t-shirt soaked from vomiting on myself the only water left in my stomach. Helpless, I lied there exhausted like a drug addict dying of an overdose.

I could not stand up without becoming faint and having a weakness spell. It felt best just to lie on the floor between the bed and the bathroom. Fortunately the floor in the hotel room was carpeted and relatively new so it provided some source of cushioning and warmth.

One more time I tried to hold down a cup of water in an attempt to alleviate the painful dehydration headache and relieve the cramping of my calf muscles and building stiffness and soreness in the rest of my body. As the fluid violently shot back out of me into the pail next to my makeshift bed on the floor, I felt desperation. I pleaded with Harley to call a doctor and the department of health to get some help. For the first time in my life I begged to go to the hospital and get an IV (this is pretty major as I hate needles and my veins are very hard to find).

As Harley was on the phone with the department of health officials, my mother-in-law came into the room to pray for me. I was in no condition to get up and make it out of the hotel to the hospital across the street. Paramedics would have needed to come to retrieve me and give me an IV. Yet, after my mother-in-law had touched my arm and said a prayer for me (and my own prayers too), I felt a sense of calm come over me. It was sort of a pause (like time standing still).

When I came back to the reality of real time, I remembered the bad experience of throwing up violently and not holding anything down when I awoke from surgery. Although they gave me an IV after my surgery to keep me hydrated I was terribly parched from over 24 hours with no fluids ingested and having an air tube stuck down my throat for about 6 hours. When ICU felt I was going to be okay, they gave me ice chips to quench my thirst and dry mouth. Recalling this experience, it finally dawned on me to try the ice chips as a last resort before going to the hospital for an IV.

Ah! Our prayers were answered! The ice chips worked and I continued to suck on them the rest of the day and began to feel better. After the last incident of throwing up the water, the vomiting and diarrhea subsided. I lied in bed the rest of the day and built up enough strength to hold down a Gatorade and later eat a banana.

My stomach still feeling queasy and my body purely exhausted, I lied in bed the next day too and went out to look at stuff for 4 hours in the evening.

Seeing Harley was able to eat pizza 2 days after the onset of his bout of food poisoning, I thought I would be okay. Therefore, totally starving I ate some left over pizza and later had a yogurt and chicken fajita mix I made over a bed of fresh spinach. Although it was not super spicy, the Mexican food just did not seem to sit well with me. At 4 am my stomach was in excruciating pain again and it felt like the bacteria in my gut were waging a war against one another.

I chewed the Pepto Bismo tablets in our travel packs and downed some Maalox that I bought for Harley the day of his food poisoning attack. I was hoping the remedies would create a sense of peace and calm but instead the war raged on getting more intense as time passed by. I was getting no sleep at all and by 6 am I longed to throw up in order to get relief from the nauseating pain.

I got up to go to the bathroom and the diarrhea started all over! Fortunately I was not throwing up into the trash at the same time again. When I returned to the bed the movement and pain was too intense causing me to hurl all the contents of the previous night's meal into the puke pail. My last day in Vegas and I was still sick and my flight did not leave until late that evening! Harley called the front desk and the hotel was gracious to overlook the 11 am checkout time and give us a smaller room for me to recover in until we needed to leave for the airport.

The food poisoning was very early in our trip (we narrowed it down to the dinner we had at the Tamba Indian restaurant late Tuesday evening). Harley was supposed to attend the conference Wednesday and Thursday but he woke up early Wednesday morning with vomiting and diarrhea. Weakened from the physical taxation on his body, he had to spend Thursday in bed recovering.

Since I did not get sick immediately as Harley had, I thought it must have either been something he ate earlier in the day or a different dish than I had. I had not eaten all of my dinner so I had the rest later the next day and then the remaining rice on Thursday. Friday morning at 4 am I had my food poisoning attack so we are pretty certain the source was the food from the restaurant we ate at on Tuesday night.

Fortunately we got sick at separate times so we were able to spend some time with his mom who met us there. I am disappointed though that we did not get to go outside of Vegas and see Red Rock Canyon and the fantastic geological topography of the Valley of Fire state park north of the Mojave desert. We had planned to go on Friday but that was the day I got sick and I could not even think of leaving the bedroom even!

When I picked up a gastrointestinal bacteria in Mexico and had a fever of 104 degrees, I was still able to take some medicine and visit the ruins outside Mexico City. No chance of that happening with this one. Harley said it is the sickest he has even been (that is included with a bad pneumonia infection during basic training in the Army and Traveler's diarrhea in central America). I have been through a lot (mononucleosis, cancer, traveler's diarrhea, a gastrointestinal bacteria infection, brain swelling, steroid withdrawal, and severe vomiting due to reactions from Vicodin, Tegretol, and anesthesia following my surgery). Yet, I had to agree that this was one of the worst. The duration may have been shorter but the symptoms were pretty severe and scary.

My stomach is still sore like someone punched me in the gut hard and I am feeling kind of weak. Therefore, I am taking it easy as I don't want it to start back up again like it did yesterday. I am really hungry. I had to drink another Gatorade yesterday and later I had an uncooked english muffin and half of a turkey ciabata sandwich. I have to eat bland stuff, stay away from spicy things, and avoid dairy. The fridge is bare as I need to go grocery shopping. Luckily I had some pancake mix left and some strawberry banana V8 juice. The pancakes were phenomenal! I was so hungry. Hopefully this will be the last day and I will be feeling more normal tomorrow. In any case, it is nice to be home. Let's hope "what happens in Vegas, STAYS in Vegas".

Sunday, April 20, 2008

Hey! What happened to spring?

left: "Hey! What's going on? Who turned off the sun?"
right: dogs are puzzled
above: lavendar jewel tulip in the fields at Tulip Town in Mount Vernon Washington a week ago today

From this.......

Pictures taken on April 9th at the University of Washington campus in Seattle
My sister is standing next to a favorite magnolia tree in bloom near the college of education building where I attended classes. A light purple azalea (another favorite of my sister's and mine) is blooming in the back ground.
To the left is a picture of the old growth cherry trees in bloom in the courtyard outside of the college of education. To the right is a lovely bed of daffodils with the campus and fountain in the background.

To this!

Snow showers in western Washington (at our home) currently on April 19th

Thursday, April 17, 2008

Pain Can Be An Opportunity

You know the saying "No Pain, No Gain". Well, whoever thought that up was not half baked.

Although I will be the first to admit that I absolutely hate pain and would rather avoid it, pain can be productive if you channel the experience and energy in the right direction.

A few days ago I was wallowing in self pity from emotional pain. It lasted all day and intensified the more I had time to mull it over. Later that evening at the gym, I had an "aha" moment. Just like the physical exhaustion of lifting weights to make the muscle stronger and improve its appearance, pain can be the inspiration for personal growth and betterment.

In the movie "As Good As It Gets" with actress Diane Keaton and actor Jack Nichols, emotional pain is what they needed to grow in their relationship. It is interesting. Diane Keaton is a character who plays a writer and has the perfect beach house on the coast to get away from it all and to do what she does best....."the writer's abode". However, she hits a long period of writer's block and is pressed to meet her upcoming deadline.

When she unexpectedly meets the character Jack Nichols plays, her life turns topsy turvy. At one point they break it off leaving her completely distraught. During that time she retreats back to the beach house and her experience of anguish inspires her to complete the novel she is working on.

It is kind of funny and I like the cleverness of the lines used in the following scene. The character played by Jack Nicholos is also feeling really down and misses her so he decides to call her. He asks "How is the writing coming?" to which she replies "Oh! Its just pouring out!" Then she starts literally bauling.

Anyhow, back to my story...As I said, I don't like pain. Lord knows I have been through my share of both physical and emotional pain. One in my position could ask "Why did I have to have so many needles stuck in me? Why did I have to go through the trauma of having cancer and brain tumors? Why did I have to lose my hearing and balance?"

Sometimes we don't immediately see or understand the reason. I can recall times when both Harley and I have been through personal struggles and because of the tragedy/loss it motivated us in a different direction that paved the way for a better quality of life. Yet at the time, we would have thought the trying experience was "the" or near worst in the world.

My pain has given me a broader perspective of things. It has helped me to learn the true meaning of empathy, a term first introduced to me while in college at the tender age of 19 when just beginning to discover adulthood. At the time, I had a hard time understanding the difference between sympathy and empathy but that quickly changed in the fate which was to become my life.

At 21 when going through chemotherapy and facing the reality of my mortality, I couldn't immediately find justification nor reason. Yet, 15 years down the road my persverence as a survivor has provided hope and comfort for others enduring the same.

Pain is inevitable and something we must learn to accept and brace ourselves for. The opportunity lies in how you respond to the pain and harness it to be productive.

Wednesday, April 16, 2008

New Book for my Wish List

Hope Begins in the Dark
by Jamie Reno

- stories from 50 Lymphoma survivors

Taken from the website for the book:

"Lymphoma is the most common blood cancer, with more than 65,000 new cases diagnosed each year in the United States alone. It has taken the lives of such people as former First Lady Jackie Kennedy Onassis, baseball great Roger Maris, country western icon Gene Autry, punk rocker Joey Ramone and flying legend Charles Lindbergh. But lymphoma, in its various forms, still does not receive the amount of public attention or financial support that many other cancers receive.

In this first-of-its-kind book, Jamie Reno brings together a diverse group of lymphoma survivors to share their remarkable stories. The people in this book come from all walks of life, but they share a strong will to live and have all made their own informed decisions about cancer treatment. Their stories are filled with courage, compassion, and hope. "

Click the lighthouse icon in the post title to read more about the book and how to order it.

Tuesday, April 15, 2008

Out of the Brain Fog

Brain Fog as defined in Wikipedia online encyclopedia:

Brain fog is a term for the "woolly" sensation of a physical obstruction to clear thinking in the brain, often extended to apply in general to
neurocognitive symptoms experienced by many people who suffer from diseases such as ME/CFS, fibromyalgia, amongst others.

Brain fog involves persistent or episodic
cognitive dysfunction, and may be associated with forgetfulness, confusion, slowed thinking, distractability, depersonalization, the inability to remember the correct words when speaking or writing (dysphasia or aphasia).

Brain fog is so named because the sufferer can feel like a cloud literally surrounds him or her that reduces the speed at which things can be recognized or clearly seen. Sufferers describe it as "feeling like a hangover" or "zoning out" Brain fog may promote feelings of detachment (depersonalization), discouragement

By Lawrence Wilson MD:
Although less common, misalignment of the spine, or any impingement on the cranial, cervical or other nerves may cause symptoms of brain fog. Brain fog is occasionally caused by an illness such as a brain tumor, epilepsy, meningitis or encephalitis.

Interestingly this is the term I chose to label my "space" phase. Not knowing that this is an actual term, brain fog was the best way I could describe the mist I was hopelessly wandering around in for the past 3 years following my cyberknife radiosurgery treatment. Here I thought I was being clever by coining my experience as brain fog and thinking I came up with the name. Then last year I got an issue of reader's digest with the phrase "Conquer Brain Fog" written on the cover. LOL I guess that is part of my fog. Maybe I knew or heard of it but forgot and thought I was being original. :oP

When I would tell people they would not take it seriously or say "Oh yeah that happens to me all the time.". Well, for some people one of the side effects may be a regular normal occurance but not all of them for someone like me. Spelling is challenging for many people but I never had a problem with it. As a matter of fact, I always excelled at spelling since my childhood days. Yet, I began to mispell the simplest of words or using the wrong synonym (such as "to" instead of "too" or worse yet "red" instead of "read"). You have to understand, I just did not make these kind of errors on a regular basis.

In addition, I often lacked the ability to think of the correct word to express myself (I am not talking about some grandiose vocabulary term but something simple). Further, I often typed words I was not at all aware of until after I read what I wrote or I thought I typed words which I didn't. This was such a nightmare when writing emails or blogging. I had to proof EVERYTHING and often read and reread which was very time consuming.

In regards of short term memory, it was just gone and is still a challenge but the recall time is getting better (down to less than 10-15 minutes). Harley and I have developed many strategies to help. It used to be that I could walk into a room and not realize for a half hour or longer why I was there. It does still happen but with less frequency and within a few minutes a trigger will encourage me to remember.

Over the years we implemented many organizational tools and habits to make my life easier (kitchen organization and specific places for things which always are put back in the same spot, a chalkboard next to the door for tasks with a hook for my keys, a white board next to my computer for the same tasks, a total rehaul of our offices with new bookshelves and cabinets, the use of daily task lists either written or typed, etc.). There was a large learning curve for me to remember where things belonged and this new system but finally over time I adapted. I still do have some problems with losing my keys by forgetting to put them back (they are either in my bag, pants, or coat pocket). If I happen to be carrying lots of things from the truck I will stick them in one of the afore mentioned spots and forget the location not remembering to put them back on the hook. The forgetful foible has caused some intense stress on occasion.

Along with my forgetfulness and lack of ability to express myself correctly, I had many cognitive difficulties and comprehension challenges. Simple math in my head became just impossible. I reached the point where I had to bring pen and paper to the grocery store to write down the prices and add them so I had an idea of how much I was spending. Ok, so for some people perhaps that is normal too. But typically those who would have difficulty figuring out simple math in their heads have trouble with math in general. I on the other hand, have had to perform higher level math in my studies of chemisty and physics for my zoology degree. Further, I developed lesson plans involving algebraic problems when I taught 9th grade physics in 2003.

It is amazing that I was able to successfully make it through ASL levels 2-6 during this time. I restarted learning the language just prior to treatment. I was able to get in one refresher class and complete half of a college level course for the 2nd part. All I can figure is that I had a good base and recall from level 1 and the refresher with a good start to level 2 while my memory and cognition were still sharp. Although the brain fog was not immediate after treatment, neither were the other complications I suffered. I was sick and throwing up yes but I still had pretty good balance and comprehension level. The tumor swelled over 11 months post treatment and so there was a building up of side effects over time (reaching its apex in 2005).

Therefore, I completed level 2 and 3 with ease but began to have challenges with level 4. Part of the reason (in addition to symptoms getting worse as the tumor grew) was that I took level 3 and 4 at the same time at 2 different schools in 2 different cities. The commute was horrible and taxing. When I took the course in the fall of 2004, I began to suffer many vision problems which not only made driving stressful but created an obstacle to my receptive skills in comprehending what was signed to me.

By 2005 I had totally had it! I took a year off from any classes at all. This was the year when the brain fog took its full hold. My spirit became broken by the losses I had suffered and the new symptoms which just seemed to keep cropping up. I floated through my days in a stupor.......a fog. I figured out yesterday that I must have become so overwhelmed emotionally (and physically) that I was in a state of shock. I really anticipated it to go much easier and that perhaps after a month of recovery things would be back to normal. Prior to my treatment I had expected to be ready to take on my first classroom as a science teacher in the fall (2004). Further, I was looking forward to doing more diving, rollerblading, and hiking that I had to put off while going to grad school. I was ready to get serious and dapple in backpacking and then mountain climbing. Instead, everything went horribly wrong leaving me to salvage the shattered pieces of my life.

It was then that my being went into a brain fog as a survival mechanism. The intense discouragement and disappointment was too much for me to consciously digest. In 2005 I could not continue on by taking more classes. Learning new things became incredibly difficult. I did
expose myself to sign language environments by attending a weekly meetup of ASL students and monthly ASL socials where I could interact using the knowledge I had attained. During this time I was learning how to be deaf because that is what I was and it was not going to change. My only option in order to survive was to accept it and find a way to function.

Along with the deafness, I suffered worse complications which emotionally tore me apart. My balance declined to the point where my dreams of hiking and climbing mountains were snuffed out. Further, the imbalance totally changed how I could use my body and get around. Not prepared for this change, I suffered painful falls and injuries while I learned to adjust. As if there could not be any more plight to my misfortune of total deafness, loss of balance, loss of feeling in my extremities, facial paraylsis which caused not only a disfigurement but also dental, eating, and drinking problems, but my vision became obscured too! Holy crap I was beginning to feel like a basket case! When was it going to end? Would things get better or just continue going down the toilet?

In the end of 2005 I started to show some improvements. For one my face recovered some function (not all but much better than it had been over the past year). I was finally able to drink from a glass instead of a straw which was a major uplift and milestone for me. With a recovery of part of my face and medication for my eyes, I felt ready to finish the ASL series. In the winter I took ASL 5 with my friends I had met over the previous year and we were able to carpool together which solved my driving and commuting problem.

For the final class (ASL 6) I audited it as the course was just too fast for my eyes and comprehension ability. By attending without the pressure of a grade, I felt my learning would be less frustrating and I would be more receptive to acquiring the language I was forced to learn in order to survive. That was the tough thing for me. While most people in the class were studying to become interpreters, EVERYONE was thrilled about learning this language and found it fun because it was a personal choice and interest. For me, yes it was a choice but not for the same reasons. It was my choice so that I could have a better life and be able to function. It is kind of like taking chemotherapy. Patients are not estatic about taking it or WANT to take it, but it must be done in order for them to have a chance at life. Thus, it was the same for me. It would have been different if I had chosen to learn it with the same enthusiasm as learning to scuba dive.

After completing as far as I could go with taking sign language classes, it was time to work on my body and try to recover endurance and some balance function. It was also time for me to feel like I was making a difference. Thus, I captained a team for the American Cancer Society's Relay for Life and that weekend I signed up for Team in Training to walk the Seattle marathon. My training carried me through to the marathon at the end of November and then I worked towards climbing the highest skyscraper in Seattle for another fundraising event with the Leukemia and Society.

With all those things out of the way, I felt I was beginning to come out of the fog in spring of 2007 when I was hit with another major obstacle (the hardest yet to face). The tumor was not getting any smaller and by this time was compressing my brainstem too greatly where it was only a matter of time before the other shoe dropped. Well, fortunately after all I had been through in the past couple years and the progress I made, I was ready to face what lie ahead and do what needed to be done. Thank goodness because there was lots of reading, things to learn about getting a brain surgery, questions to ask, records to put together, and crucially important choices to be made! I would have had a difficult time doing all this in the years 2004, 2005, 2006.

I still have another surgery to face for later this year which I am sort of putting on a shelf in my mind right now. At least now I have a surgeon, a medical team, a hospital, knowledge, experience, and an idea of what to expect. With my face 75-80% healed, teeth healthy (not crumbling from lack of saliva to protect them), able to eat, the greatest improvement of my balance and endurance, eyes doing ok as surgery relieved the pressure and I am off the medication, off the steroids (which I was on for most of 2005 and then on again after surgery in September until March of this year), the feeling returned in my extremities and the developed ability to sense vibrations to substitute for my loss of sound, and the ability to communicate with my husband, sister, and friends along with being more comfortable as a deaf person (less awkward), I am finally taking an interest or have a desire to learn something new.

I have had my text phone for 2 years as well as my camera. I am very limted to the basic functions of each and do not know how to get the full potential out of them. For the past couple years I just did not have the ability to learn more advanced functions. For the text phone, I carried around the manual but either could not comprehend and remember what I was reading or could not finish reading the instructions. For my camera, I never even looked at the book until yesterday. For the past couple months I have been frustrated that I do not have the technical knowledge and skill to take better pictures. The last couple times I accidentally knocked the dial off automatic onto the wrong setting only to realize after it was too late and I could not go back to take the picture. One of the settings is P. For the first time in the since aquiring the camera, I had a genuine curiosity in finding out what P stands for as well as the other abbreviations on the dial.

This is another major milestone for me as this eagerness to learn something technical has been absent from my life for the past few years. It is very exciting as well as refreshing because it is a sign to me that the damage is not permanent and I am coming out of the brain fog. What I figure is that I have been severely traumatized by everything that has happened to me. So many changes to my life occurred where I had to learn to adapt and how to function again as a new person. It has taken a long time but I have reached it and can now consider interests outside of pure survival.

P.S. - Did I mention that I feel like a darn idiot admitting I don't know how to use my phone or camera? How embarassing! Talk about archaic and not with the program. The high school age generation would just cringe. If I had kids they would think I was ignorant.

Note: Brain Fog also happens to cancer patients taking chemotherapy. I can't tell you much of my experience with it as that was 15 years ago and my mind was so altered that I cannot remember certain things that happened. I had to be told about them later. This is known as "chemo brain" which is very common. If you click the lighthouse icon in the post title you will be taken to the Lymphoma Blog where another author writes about her experience with "chemo brain".

Wednesday, April 09, 2008

Today is a great day to be a survivor

Today is my special day......the day I have been looking forward to for years. It is the 15th anniversary of my final chemotherapy treatment. Even though I had 2 and a half weeks of radiation in May and confirmation of my remission at a July 1993 checkup, today was the day in my mind that the saga with cancer was finally over and it was just a matter of waiting each year until I was considered cured. I responded so well to the 6 months of chemotherapy that the doctors pretty much said the cancer was gone and the radiation was to follow for extra assurance. Although I had a few side effects with the radiation, it was so much better than the poison which had been pumped through my body for months. It is an irony. To kill the cancer I was given toxins that also attacked my good cells leaving me with several unpleasant side effects which made me sick where I felt like dying.

If I had not made it through the rough seas, I would have never met my husband and the wonderful people who have inspired me and enhanced my journey . I have been lucky to pursue several things in life and experience many joys. I could not have imagined how lucky I would become. I have been truely blessed!

For today I am going to take advantage of that joy and celebrate. This afternoon my sister and I are going to one of my favorite places in place of serenity where I am surrounded by the beautiful creations which God has given us....the volunteer park conservatory. Then we will walk in the sun among the cherry trees blooming in the University of Washington courtyard where the College of Education building I attended is located. If time allows, we will walk on the path in the Washington Arboretum where daffodils are in abundance and more cherry trees are scattered.

This evening DJ, Michelle, Harley, and I will continue the celebration at a restaurant near the trail I run on.

Have a beautiful day!

click the link above in the post title to view the world famous cancer survivor online movie

Monday, April 07, 2008

Attack #2 for the year

This evening I went for a run followed by a walk up on the Redmond Ridge. I started out wearing my gloves and after I finished a 38 minute run I had to take my gloves off as my hands became too warm. Following my run, I walked briskly for another 38 or 40 minutes while the sun faded and the temperature dropped slightly. I began to cool off so I put my gloves back on.

When I was finished with my route I stopped at the nearby QFC to pick up some yogurt smoothies as they didn't carry them at the QFC in Carnation where I ventured on a long walk last Thursday. In addition to the smoothies, there was a sale on all sorts of yogurt so I picked out flavors I liked and then grabbed a couple frozen meals out of the freezer section.

Minutes later while driving home, the middle finger on my left hand felt stiff and cold whereas the others seemed fine. I put on my gloves and when I got home the finger was all white like it was dead. I had to rub it vigorously under hot water to restore the color and bring it back to life.
This time was not too extreme as there was no tingling when its vitality came back and there were no color changes from white to blue to purplish black before turning red (as the attack I had last year after touching something cold in the grocery store). I am wondering if seeing as the same finger on the left hand succumbed to the attack, if it could perhaps be related to pressure being exerted on my brainstem from the tumor on the left side. I really wish I had kept track of which hand was being affected by the Raynard's last year. It seems to only appear in the spring even though I still wear gloves like in the winter. The timing of the occurance is a mystery. ????


Compartmentalize - to seperate into isolated compartments or categories
-Webster's Ninth Collegiate Dictionary

The first time I heard that term was when actor Jennifer Garner (character - double agent Sidney Bristow in the TV series Alias) used it to describe her life working undercover for the CIA while serving as an operative for an illegal rogue organization. Since she led a double life where her father and boyfriend also served as agents for the CIA, she had to hide the truth from her friends and coworkers who unknowingly worked for what they thought was a legit crime cracking sector of the government. The constant scheme was emotionally taxing so how she dealt with the demands for secrecy was to detach her feelings by compartmentalizing her thoughts. Of course this was not always easy and there would be times when emotions ran high to the point of being overwhelming. I reached that apex last Thursday and the hard reality of the situation hit like a boulder falling on one's head.

For the most part, compartmentalizing is how I cope. Prior to my first surgery I was left with feelings of incredible anguish. At times I would be at the gym at very late hours. I am not even sure what time it was but it must have been late as I was one of the very few people if any there. On one occassion I thought I was the only person in the locker room. After sitting on the bench for a few minutes in a dazed stupor, I broke down crying without any tears. Finally, I turned around to find a cleaning lady scurrying around and then was embarassed for fear she might have noticed (and discovered) me.

In order to get through these intense emotions so that I could concentrate on my preparation for surgery, I had to often detach myself personally from what I was going through. When doing research on surgeons and medical procedures and to comprehend the terminology, I took on the perspective of science student as I had learned back in college. Further, due my study of science and then teaching science, I was able to confront my search for a treatment and surgeon the same way I would approach a scientific problem through inquiry. When compiling the questions and attending consultations, my approach was as if I had been given a scientific research project.

After the surgery the focus became training and preparing for the next surgery. So there are always goals and projects to occupy my mind (and body). However, every so often there will be a frustration/an obstacle (such as the impossible task of contacting a government office over the phone to take care of an important matter) which will inflict the painful sting of who I am and what I face. Then for awhile I will be sad and angry about what has been taken, what more there may be to lose, and what limitations have been placed upon me not only making my life challenging but also creating lots of turmoil for Harley to contend with as well (even though he does an excellent job and is a great advocate for me).

It is only inevitable and natural that either of us should hit a ceiling at some point. When it happens we just need time to be human....time to let it pass. For a short bit (such as Thursday morning) I will cry and feel sorry for myself and be angry. Then it will occur to me that I need to experience this phase every now and then to wake up to the reality of what is. In order to become motivated to do something about it, I have to see and understand. If life were just perfect, I would view it through a narrow lens unaware of where help is needed.

It is not fun to live with thoughts of one's own mortality, tumors growing in the brain and body, but the idea of living a shallow and aloof life sickens me.

Thursday, April 03, 2008

What do I want to say to the world's top NF researcher's?

On facebook there is a group for those of us with NF2. Another girl with NF2 posed the following question and below is my response to the discussion:

What do you want to say to the world's top NF researchers?

While it is important to find a cure, there are still many devastating side effects people with NF2 suffer.
What is being done to address treating and alleviating these symptoms while the search is to stop tumor growth?
What I am referring to are the following permanent conditions that we are left to deal with as the result of tumor growth, radiosurgery, or surgery:
1) Ocscilliopsia (jiggling of the eyes which impairs vision)

2) Nystagmus caused by damage to the brainstem from any of the above which also impairs vision and has an effect on balance for those who need to depend on their eyes.

3) Imbalance - what is happening with the balance implant and what type of therapies are being implemented to improve balance in our specific situation?
More than anything this is a serious safety concern as many of us have suffered injuries and some people are even confined to a wheelchair as they can no longer function due to the severity of their imbalance.

4) Swallowing, eating, and dry mouth stemming mostly from lack of saliva production which also rapidly increases tooth decay.
Is research being done to stimulate the inactive salivary glands?
Due to the lack of saliva, the enzymes needed for digestion are absent or too few making eating for many challenging.
Is an enzyme spray being developed to address this problem?

5) Due to injury to the facial nerve, often the tear glands are also affected causing loss of tear production and dry eyes. To add insult to injury, this condition is enhanced if facial paralysis prevents the eye lid from fully closing requiring a gold weight implant, application of gel drops or ointment at night, or taping the eye lid shut at night. Although restasis is available, many people experience eye irritation and cannot use them.
What research is being done to find a way to stimulate these glands? The need to use eye drops continuously everyday for the rest of our lives gets very expensive and insurance does not cover them.

6) There is a very high incidence of damage to the facial nerve causing facial paralysis for many people. Not only is the physical appearance affected but many of the problems I have mentioned above along with food unknowingly falling out of the mouth and drooling, become serious issues we have to contend with on a daily basis.
Further, due to the onset of deafness which often results in this condition, we need to rely on signing communication to get along in the world. However, facial expression is a very important part of sign language to convey meaning. The loss of facial animation creates an obstacle in expressing oneself accurately through sign communication. For all these reasons, facial paralysis has been a daunting and life altering problem for people with NF2 and we have desperately searched for methods which could correct the paralysis.

What procedures are proving successful and viable in facial reannimation?