Monday, February 21, 2005

Help! I am becoming a prune!

I don't know what the deal is but I am seriously drying up like a raisen! It all started with my feet which did not seem all that strange at first. In the summer I routinely go barefoot and live in sandals. So a little dry heel and calluses are to be expected which disappear in the winter.

However, my feet seemed to be exceptionally dry this fall. In fact, I hated going to sleep barefeet because my feet where so scratchy! They became like crusty dried up toast and the skin started to snag things. Harley managed to find a special foot cream called "Heel Rescue" which has helped somewhat but you have to be religious in using it every night.

Okay so I dealt with the feet and thought it was just age. Then in October I lost the ability to produce tears and recently I have learned that my swallowing difficulties and dry mouth syndrome are the result of decreased saliva production. I dealt with that too and still am.

But now, my hands are getting more dried and callused no matter how much lotion I put on several times a day! I have had dry hands in the winter before but this takes the cake! The skin is so dry that when I straighten my fingers I can feel the stretch of the tight skin. Plus the palms look as though I have soaked them in hydrogen peroxide for hours. They feel like sandpaper and when I apply lotion you can see hundreds of little line from cracks. They are improving at the moment because I just applied lotion for the 10th time or more today (that is not joke or exageration).

Okay I suppose I should do the foot lotion ritual now and get to bed. Have a great week!

02-20-05 Daily report

Today seemed like a pretty good day except that I am still pretty tired. In fact I am the most tired now out of the whole treatment process (7 months post treatment). Harley and I were talking and we think this may be due to coming off the steroids. On the steroids I got very little sleep so my body probably did not have enough rest and is trying to adjust.

I have read of other patients experiencing headaches and fatigue after cyberknife. I did not realize these symptoms might come on or heighten after a long time period. I guess I thought it would occur earlier.

I again went for my walk but was really tired and napped beforehand in the afternoon. I had to force myself to get up before I missed all the great sun today. I got a headache at the trail so I took my excedrin then. Today I did not concentrate on trying to walk fast and I took some short breaks. After the walk I felt better and refreshed. I think the cold 40 degree air woke me up. When I got home I was able to finish bringing in the firewood to dry and the trash out to the road.

I wanted to vacuum the house and ride the exercise bike a little but it didn't happen. I chatted on instant messenger for a while and lied down for another nap. So in case you are wondering, that is why I am awake again at this weird hour. One of these days I will get back on track with a normal sleeping schedule and function like a normal person.


It is amazing how exhausted I am becoming! I am still a little nauseated when moving around but I deal with it and do not take the promethazine. If I were to take it, I fear I would never be awake for more than a couple hours each day! As it is I feel like I am sleeping my life away!

The headaches seem to be occurring about the same (twice a day and I take the excedrin right away before it gets bad). I am able to walk the flat trail without my hiking stick but I am still bumping around everywhere in the house.

It has been an incredibly gorgeous rain and beautiful sun! Thus it is disappointing that I am sleeping so much. I got up at nearly noon again and took 3 naps!

I really had to motivate myself to go walking. The whole walk out I felt like turning around because I was so tired and just was not into it. My sight was somewhat disoriented from the nystagmism and my eyes being dry. Therefore the walk was not as enjoyable as it could be as I could not see that far in front of me and my sight kept bouncing up and down and shifting around me.

The walk back was better as the sun was at my back and I had a chance to look at th detail of the trees. It got me thinking back to an episode during my honeymoon when we were in Honduras (in the jungle outside of La Ceiba which is the mainland). Looking at the moss and ivy on the trees reminded me of the epiphytes in central america. I also remembered the trees being the largest I have ever seen in my life! They literally dwarf the largest trees here.

All this got me thinking of a very funny episode when Harley jumped into a pool of water formed by an amazing waterfall system. All of a sudden he got this terrified look on his face and he yelled in terror as he jumped out of the pool of water faster than I have ever seen him move! Meanwhile I was videotaping everything. Apparently he felt something brush past his leg ( anaconda??). Here we thought we were all alone in the jungle and we came to discover that Harley's shrill scream startled the teenagers making out on the rock directly above us!

02-18-05 Daily Report

Woke up early and for the second morning in a row I ran head first into the log pole standing between the bathroom and the stairs. I am very disoriented in the morning and can no longer safely walk aroundthe house in the dark obviously. I did not feel so good so I took 3 IB Profen and went back to bed until around 11:30 am. I took another nap later in the afternoon.

Lately I have been getting extremely fatigued. It takes me all day to motivate myself to go for a walk with the dogs. Today I went to Marymoore park (the dog park) for a change of pace. I did not use a hiking pole and my balance was not so hot so I had two incidences. First I slammed the left side of my body into the fence on the bridge. As a result I cut my hand and it has become infected and stings. The other incident was kind of embarassing but I dont think people may have seen me. I bent over to pet Katie and I nearly crushed her from falling! Fortunatley she moved out of the way and she was sitting nicely. I looked up and down the trail to see if anyone noticed because they would have thought I was a drunk!

After returning from the park I hurried to get ready as Melody picked me up to go to the monthly BCC ASL club coffee night in Bellevue. On the way there I got another headache but brought excedrin along with me. The headache went away and I had a wonderful time visiting with many people. More and more people are going each month. Nearly our entire Wednesday night asl meetup group was there! As always, we were the last ones to leave after Starbucks had closed.

02-17-05 Daily Report

Ah I am starting to slip already in keeping up as it is already early monday morning. All I can remember of this day is the same ol' same ol'. Basically I wake up and take excedrin and then go back to sleep until late morning when I get up and generally use the computer. Often I take two naps a day and get two headaches a day. My balance is continuing to digress but I still manage to go for a walk with the dogs for the usual hour (3 miles or more).

Friday, February 18, 2005

02-16-05 Daily report

I was wakened at 5 am this morning with a SCREAMING headache. I would venture to say that this was the worst one yet! However, this headache did not cause me to throw up and I was able to take the excedrin without a problem. I lied back down to let the excedrin kick in which took about 20 minutes.

The rest of the day I felt pretty good. I spent some time in the morning at the computer and lied down for an hour nap. I need to take 1 or 2 naps daily as I will all of a sudden become fatigued and can fall asleep just about anywhere.

For lunch Harley and I met a friend at the Indian Buffet. Normally it is hard to eat at buffets when off the steroids but I had not eaten at all yet so if worked out pretty good. I asked for a straw this time and was able to drink lots of water. At a certain point I was having swallowing difficulty again so I had to start taking smaller bites, eat more slowly, and douse each bite with a little water.

I do not know about you but we just LOVE Indian food! Thai is also one of our favorites. I am sure glad I have not lost my taste for either one. Eating these spicy dishes does not seem to bother me and I actually prefer it. However, mexican I can't eat sometimes and chinese is a most definite no. Maybe it is the grease content and flavor in the latter.

The rest of the day I recall being tired and a little off balance - dizzy.

We walked the dogs between 5 and 6 pm so I had to use a hiking stick as I really lose orientation as it gets dark. Often I walk around the house as if I am on a boat. I bump back and forth between walls and stationary objects. I have bruises all over my body as when I first wake up I am really disoriented and have to be careful.

When we got home I lost my orientation and fell on the stone coffee table again. I have learned not to leave glassware sitting there anymore as I sat on a glass a few months ago. I had gotten up off the couch and only the light emitting from the tv was present. Somehow I had lost my sense of balance and just sat on the table. When I did so, I felt a crunch underneath myself. I was stunned but also almost afraid to look. I looked down and there was glass everywhere and the bottom remnants of a glass. I then pulled up my leg to view the back of my thigh. Just the sight of the blood and deep gastly wound made me sickened and nearly pass out. It did not hurt at first because I think I was in a state of shock. The cut was so deep that it took a long time to heal and I have a huge dark scar as a result.

The moral of the story?
Don't leave breakable items and dangerous objects sitting in places where you might hurt yourself.

The rest of the night I took a long nap from about 7:30 to 12:30 pm and woke up to watch Atlantis (good movie). After the movie ended (about 2 am) I had another very bad headache before going to bed. I took excedrin but this time I was really nauseated and sick. I chewed some Gaviscon tablets and tried to cure my episode of the chills under a mound of blankets. I did not even put on my pajamas. Within about 15 minutes I think the chills went away and I fell asleep.

Trip to the eye doctor

Tuesday morning I awoke (9 am) with a mild headache and took the excedrin before it got too bad. Still I felt kind of nauseated though. As you can tell from how much I have been writing, I spent the morning at the computer which does not seem to bother me.

My eye seemed a little better. I could read words out of it although it was a little blurry. The optomitrist wrote me back and said that luckily they had an openning in the late afternoon.

Fortunately my cornea is not scratched! He could see the old scratch that is healing. Apparently my eye was inflamed from the soap incident and it is having a problem with drying out due to not blinking often enough from facial muscle weakness. It appears that the lower eye lid is hanging open a little. When people close their eyes or blink they actually also move the lower lid. Mine seems not to move. As a matter of fact, when I open my mouth wide, there is a little bit of an open gap the forms between my eyeball and the lower lid. The lid does not stay stuck to the eyeball like it should. The doctor recommended that I apply artificial drops to my eyes hourly, apply tobradex sauve to the eye as needed and underneath the eyes where the lower lids have become irritated with itchy dry red skin, and finally to tape my eye shut at night.

After the appointment we stopped at Home Depot to return about $1000 worth of left over remodeling materials. It took so long that I looked at every type of bulb and live plant available! I was really worn, feeling dizzy and kind of nauseated still. I found a nice wicker share in the lawn and garden department where I could prop my feet up on the matching wicker table. I became so comfortable that I fell asleep for a half hour to an hour! I totally forgot where I was! LOL I can only imagine what other customers must have thought as I was sitting there with my head back and mouth wide open! When I awoke, Harley was STILL with the cashier at the returns counter.

That evening I was feeling up to going to the ASL meetup group at the Crossroads in Bellevue. The group is a fantastic bunch of people and I always have a great time signing with them! Harley came with for the first time and had fun too. After the mall closed we went in "half price books" but I was getting dizzy and nauseated standing up for any length of time. I started to loose my patience to look at stuff.

We went home and watched a movie but my right eye was still bothering me. I could not see well out of it and it was causing my vision to be distorted with both eyes. So I had to sit close to the tv to read the captioning and cover my right eye so I could read better with just the left.

Wednesday, February 16, 2005

My NF2 history

This post is for anyone new to NF2 or if they are unfamilar with when this all started.

When, where, and how did this all start?

Well it started as early as the winter of 1998 but I was completely unaware. I was working at an environmental lab and when I spoke to Harley over the phone I was having trouble understanding some of the things he said. I attributed it to a crappy portable phone but he thought I was starting to experience hearing loss. At the time I was also hearing crickets (tinnitus....ringing in the ears that sometims takes on different sounds) at night in an urban portion of Seattle where we resided. Since crickets are not uncommon in the midwest, I thought that what I was hearing was normal until I it occured one night during the pouring rain.

Then one day while I was watching tv in our apartment I noticed that the volume was too loud when I was laying on my left side. I turned it down and changed positions onto my right side. When I did this I had trouble hearing the tv and discovered that I had a definite hearing loss in my left ear. Shortly after, we bought our first home. I did not go to the doctor because I did not have insurance at the time but decided to get some in the fall of 1998.

The next winter (Jan-March 1999) I worked for the Seattle library downtown and began to notice more problems with my hearing. I often could not understand the secretary who sat across from me (maybe 10 feet away) and the director I worked for. It was terrible because the director would often give me instructions with her back turned towards me and while she was walking away. I had to scurry after her like a little animal with pen and paper, and ask her to repeat herself (which I could tell she did not appreciate).

Then came the day I had to interview for my own position (I had been hired as a temp but led to believe it would lead to permanant employment). It was terrible and humiliating! There were three women directors who interviewed me and asked questions. The room had very high ceilings and was surrounded by windows. Thus the acoustics were terrible! While one director asked questions the other two were fidgeting with the paper in front of them which contained the questions. This made it very difficult to hear the very soft spoken director. On 2 or 3 occasions I had to ask for a repeat of the question. When I did so, the women glared at each other like I lacked focus. This was really disheartening and there was nothing I could do. It was rather insulting as I find myself an intelligent person but was percieved as spacey in the interview.

After I was let go, I returned to my job with the WSDA in the spring where I was appreciated and respected by my colleagues. I have many good memories with them. The only problem is that it was seasonal and there was no position mobility due to the dependence on federal and state funding which was slowly dwindling.

In April of 1999 my hearing loss was becoming more noticeable to others and I had an audiogram done in May or June of 1999. My hearing was very abnormal and bad for someone my age. The audiologist refered me to an ENT who decided to order an MRI due to my previous bout with cancer.

The time frame is sketchy to me but sometime that summer I had a cat scan, spinal tap, and genetic blood test for NF2 (what the ENT theorized as the source of my hearing loss). I remember going to my 10 year class reunion over the 4th of July but I do not recall knowing about the tumors just yet. At the reunion we sat at round tables and I remember having difficulty hearing my classmates who sat across from me. Shortly after the reunion I had a confirmed diagnosis of NF2 in July 1999.

It was horrifying and scary because I thought my vanity was going to be the death of me! While going through chemotherapy for Hodgkin's Disease in fall 1992/winter 1993, I was extremely upset over the thought of going bald. I put up a really big stink about it. Therefore, the doctors allowed me to wear an ice cap on my head to freeze my hair folicles. I had wondered during treatments why I was the only one doing this. A college friend who had the same cancer as I, told me that her doctors did not want her to do wear ice on her head for fear that tumors would spread to the brain. I learned that with certain cancers such as leukemia and breast cancer it is not uncommon for tumors to migrate to the brain. However, I was assured that it was very uncommon for this to happen with my cancer.

In fact, NF2 and Hodgkin's disease are thought to be completely unrelated. NF2 is a mutation of the tumor suppressor gene and is present at the moment of conception. At the time of birth, my DNA had already determined for me that I would have NF2. Since the tumors are slow growing, it is usually not detected until the early 20s or later when the person undergoes a hearing loss. Many people are misdiagnosed if their primary care doctors are not familiar with the condition. I was lucky due to the fact that I had cancer. Therefore, it caused a doctor (ENT) to have suspicions of possible brain tumors and order an MRI. My oncologist totally overlooked this and thought it was no big deal. Imagine his surprise then they sent me back to him to confirm that the tumors were not malignant! The darn fool!

So I had a diagnosis....what then????
The next few years were difficult because I had to do a lot of research on my own. I was sent to a neurologist who we felt was not very proactive in my care and did not help in gathering information. He also did not tell me all my options. I had to look into it myself and inquire. Also, he always sounded so glum when I would see him.

I was told that Gamma Knife was the way to go to preserve my hearing because the tumors were small (6 mm and 8 mm). After researching GK, I discovered that some people had died due to brain swelling or stroke. That really scared me. Plus they had to screw this halo head frame into the skull that I read was not pleasant. Still, I consulted with the leading GK neurosurgeon here. We liked him as he seemed rather upfront and honest. He could not guarantee preserving my hearing and said that I could possibly become deaf within a year after the procedure. As a matter of fact, I was often told to prepare for deafness as that is often the natural progression of NF2.

At this point I was not even wearing hearing aides. The thought of going deaf was just horrible to me and when someone mentioned learning sign language I started crying. It was also painful to attend certain functions where I could not understand what was being said. First of all I would become very bored. The frustration of not knowing what was being said was a reminder of all the tumors in my head and the possible fate that I might succumb to later.

I started to wear a hearing aide in April of 2000. The hearing in my left ear was distorted and amplification was not going to help the problem. At first I hated it, and during the trial period I barely wore the aide. Sounds were different than I knew them and I did not like it (especially listening to music). Plus, the audiologist had programmed my digital aide too loudly so that the sound of shutting a car door was painful and the crunch of feet on gravel made my skin crawl. Once getting over that hump however, I grew to love wearing a hearing aide (most of the time) and could not imagine getting along without it (now it seems much easier and a relief which I will use a different post to explain at a later date).

Still what to do??? I had researched many things: surgery, FSR (fractionated stereotactic radiosurgery, GK (gamma knife), Peacock IMRT, the Linear Acclerator at Loma Linda, and I read of cyberknife being tested in Cleveland, Ohio. The choice of what, where, and when to get treatment was one of the most difficult decisions I have ever made in my life. The HMO was very reluctant to send me out of their providers for the alternative radiosugeries where I had read they had good results.

I got married in July of 2000. In the midst of going working and doing research, I was also trying to plan a wedding. I think it was effective in taking my mind off the situation as it became too overwhelming for me. I did not want to have treatment prior to the wedding or before our honeymoon. We traveled and dove in central america so I did not want to be immuno-compromised in any way or have a problem that would interfere with dive plans. We agreed to postponing treatment and using the "wait and watch" method until we got the wedding and honeymoon out of the way. We also, agreed that if the tumor had substantial growth then I would pursue treatment.

After we returned (we vacationed for 5 weeks in the fall of 2000), I tried to decide what to do. In July my MRI revealed very little growth (1-2 mm) over 6 months. It seemed like I could buy myself time to wait for better medical advances and published results. However, my hearing seemed to digress dignificantly even though the growth was minimal. At that time I was trying to decide what I would do with my life as the funding with my seasonal job seemed to be getting less each year. I took a career interest survey which revealed the same interests that I had while in high school when I was trying to decide what degree to pursue. The results were a teacher, scientist, or social worker. I decided that I would go back to school to pursue science teaching seeing it would allow me to dabble in all sciences instead of picking just one to focus on (my undergrad degree is in zoology).

After looking into the program requirements, a counselor and I determined that I would need to go back to school to aquire endorsement credits prior to applying and being accepted into the UW graduate program. I started taking classes in the Winter of 2001 and that is when I started to learn more about life as a HOH (hard of hearing) person and what accommodations were (such as assistive listening devices or FM systems).

I have to admit, going back to school helped me put things on the backburner. The HMO was still reluctant to allow me to get treated with FSR which I was most interested in. Then I discovered that they were getting it later that year (2001) and wanted me to wait. First of all, they were real nay sayers about FSR. Then once they found out they were getting the technology, they wanted me to get treated there (mind you I would be the first one and they had no experience with it). I said the heck with being somebody's guinee pig! I felt like I was never getting a straight story or answer from the HMO. First they wanted me to get GK. Then it was "surgery is the only way to go". Next they told me it was best to do nothing when I wanted FSR treatment. Then they told me to get FSR if I chose them. When I did not want to go there but somewhere else for FSR, they went back to the advise of "do nothing". What a crazy political world we live in! I have found that you must often be your own doctor and do the research yourself because sometimes it is hard to get an honest answer.

In February of 2001 I lost a great deal of hearing in my left ear even though growth of the tumor was very minimal. I think in winter of 2002 or 2003 is when I lost the remaining hearing in the left ear. This was actually ok because the sound in that ear was very distorted and almost devilish sounding. If I was lying on my right side, the voices from a tv sounded liked something from an exhorsist movie! So I was really happy to get rid of it! However, I had to learn to adjust to hearing in one ear only. Even though the sound in my left was distorted, it greatly assisted me in speech reading and my awareness of my surroundings. Similiar to wearing a hearing aide for the first time, I had to relearn how to hear again.

Oh yeah, in fall of 2002 I warmed up to the idea of learning sign language finally. Harley pointed out that it would be very useful while scuba diving and that we could have our own secret language. I took the class at HCC and did very well in it. However, I took a job in Seattle and an online class in the winter. I was not sure if I could swing taking the second part of ASL without being late for class due to taffic. Thus my study of sign language was put on hold for until I finished my graduate degree. Since the spring of 2004, I have taken 4 sign language classes.

I was accepted into the UW program and while going to school it seemed there was never an opportune time for treatment (plus I was told by my doctors that the "wait and watch" method was the best thing to do until the tumors got bigger). During this time, a fellow NF2 friend sent me information about cyberknife treatment. I had asked my neurologist about it briefly before and he told me that it was not an option because it was in clinical trials (actually it was for areas of the body OUTSIDE the brain. The FDA approved it for use on brain tumors in the late 90s....maybe 1999).

I really liked the philosophy of the doctors at Stanford Medical Center in California. The seemed sincere about patient "quality of life" and rather honest in their willingness to provide both opinions on surgery and radiation. Prior, I found it challenging to find an unbiased view on surgery and radiation. It seemed like doctors were swayed one way or another depending on what their expertise was. I think politics and funding have a lot to do with this. So it was refreshing to read about a facility and doctors who could go either way.

Over all this time my tumors did continue to grow 1-2 mm every 6 months. For a long time I really thought I was one of the lucky ones and would have some form of hearing. However, realistically (outside of my denial) when I looked at the facts I could predict the onset of deafness by the time I graduated or just after. I would look at the growth and compare each of my audiograms from every 6 months. At the rate I was losing hearing, I would be lucky to have any residual hearing left when I graduated.

This proved true as in the fall of 2003 when I was a student teacher, my speech discrimination in the right ear (only remaining hearing ear) was at 12% without the aide of speech (lip) reading and 28% with speech reading. What that means is that I was only understanding 12% of conversations when not looking at people and 28% understanding when I focused intently on their lips. By April of 2004 I had 0% speech discrimination without speech reading and 44% with speech reading. I could hear sounds but not understand any conversation unless looking at people's lips. Even this was hard because there are many factors that influence speech reading. For one, it helps if you know the person and their voice already. It also makes a HUGE difference if you are only listening to one person's voice or if you are in a noisy setting with lots of background noise.

Before, when I was still trying to live like a hearing person I would tell people I could read lips which only made things harder on myself. Why? Well most often hearing people have the misconception that a hearing aide or an FM system helps you to hear normally like you are restored to new. NOT TRUE! Often, just having those devices raised people's expectations of me and they would think I understood everything they said. Second, more often than not, I have found that hearing people think speech reading is some magic talent and if you can do it then you understand EVERYTHING that is being said even if the person does not move their lips much or has a large mustache.

I am amazed how many people (strangers) everywhere ask me if I can lip read even though I have stated that I am deaf and need information writen down. They just don't want to do it! Sometimes it takes me 3 times of repeating myself before someone writes something down! So unless I know the person well, I do not admit that I can lip read a little. It just totally complicates the matter and I can see how hearing people treat those who are deaf with disrespect.

One day I got so frustrated being asked this question that I instinctively shouted at a gas station attendant "NO! I CAN'T LIP READ! YOU NEED TO WRITE DOWN YOUR QUESTION OR STATEMENT!" LOL it was funny because he is the only person who actually paused and visually thought about it for a moment. In order to me to have answered the question I had to lip read him. After thinking for awhile he proceeded to write down for me that the car wash closed at 7 pm. I did not realize until after I left that I was probably shouting at him.

For the record, when I started graduate school I still utilized a handheld FM system for one on one commmunication but for lectures and class discussions I needed and utilized real time captioning. Real time captioning is when a person types verbatum what is being said and I read it off a computer screen on a laptop. The captioners use the same device as court reporters and some of them work as such. Because the documentation must be fast, they do not use a standard keyboard and instead use a keypad device that combines groups of letters to form words. They are amazing people and I do not know how they do it as I think my brain would get confused trying to think of letter combinations so quickly.

In March 2004 (the day of my graduate presentation) I received the disappointing results from my MRI. The right side tumor had suddenly grown rapidly. Instead of 1 mm, it grew 1 cm! If I wanted radiosurgery, I had no choice but to seek treatment that spring or summer. The tumor was 2.8 cm and tumors over 3 cm are typically viewed as too large for the radiosurgery.

Seeing as I had been researching all my options for years, I was pretty sure what I wanted so it was just a matter of consulting with the staff and getting coverage. I printed out the contact information and facilities I was where interested in getting treated, but my neurologist would not even look at the paper. Apparently he felt the best choice of action for me was surgery and he wanted me to meet with their surgeon who had no experience removing the tumors of NF2 patients as far as I knew.

Therefore, since I had double coverage now that I was under my husband's insurance, I decided that the HMO was no longer of use to me and that I would refer myself to the facility I thought would be best. I chose Stanford because they invented the device and seemed to have the most experience (most number of patients treated). In addition, they offered a doctor who did both radiosurgery and surgery (50/50). Thus I felt that I would get a pretty unbiased opinion on whether the tumor was too large and if I needed to get surgery instead.

In July of 2004 we went to Palo Alto, CA for cyberknife radiosurgery at Stanford University Medical Center. On July 14th, 15th, and 16th I had 3 half hour treatments at 20 gray. The radiation dose was large because the tumor was large. The team felt that in order to effectively have a shot at killing the tumor, they would have to use a high dose of radiation fractionated over 3 days. Given the tumor size, radiation dose, and that fact that I have NF2, we knew that preservation of my residual hearing was unlikely. The day after my last treatment I lost the remaining hearing. For AN patients I believe the chance of hearing preservation is 80%. With NF2 however, the chance of hearing preservation is 50% or less.

So there you have it! I will have to compose a different post from treatment up to present but for now this gives you the background. If there is something you feel is missing or that I should add please let me know and I will try my best to fill in the gap. I am working on compiling helpful links where you can learn more about NF2, hearing loss, and various treatments. However, seeing as the blog is so new to me, I have not figured out yet how to attach links to this page and to post photos. I am currently working on it.

Thanks for reading!

Saturday was a tough day.

On Saturday I awoke at 6:30 am with the start of another headache. I did not want to become dependent on pain medication so I had been trying to wait as long as I could to see if the headaches would pass. WRONG ANSWER! I tried to fall back asleep and lied there uncomfortably until 7:48 am when I could no longer stand it.

I went downstairs to take some excedrin. Immediately I felt a burst of energy bubble up in my gut and I sprang for the bathroom shooting out the contents of the meal the night before and all the water I drank that morning. I laid in the downstairs daybed rocking back and forth and moaning. I was too sick to get up and try to prepare myself something to eat.

Within an hour or half hour (I have no idea really), Harley got up and was so kind as to cook me some plain cream of wheat. I went to the table and nearly puked in my bowl after taking a promethazine (prescription antinausea medication) and 4 bites of the cereal. After that I laid back in the daybed.

Harley tried to get me to drink water because I was extremely dehydrated at that point. I was terrified to do so because I felt my stomach grumbling and it felt at any moment I would puke again. After a while I was able to take the tiniest of sips and down another half pill of promethazine. I lied there for a half hour waiting for it to kick in. My head still hurt so I had to try to take some more excedrin (the previous ones came out with everything else).

This time I tried really hard to hold down the water and pills. In my attempt to do so I vomited all over myself, the blanket and the bear I was holding. Fortunately it was just water as I had nothing else left in my gut. The excedrin stayed down however. I was too sick to care if I was messy so I laid down and slept until the afternoon when I was able to feel good enough to get up and wash everything.

The second dose of promethazine must have stayed down as I was EXTREMELY tired and lethargic that day. However, my appetite returned and I was able to enjoy and nice bowl of chicken vegetable soup and a piece of veggie pizza. Later that evening I was able to take in a good movie too.

LOL - Sorry to be so graphic! You should hear my great puke story from the Escanaba state fair many years ago! I do not think anyone could top it!

Is no news good news?

Last week I met with a radiation oncologist who I find is the top authority on radiosurgery in the area here (Seattle and the NW). She worked with a top neurosurgeon with the first Gamma Knife facility in the NW. That doctor is now in California and it appears that she has taken his place in running the Gamma Knife facility and the Fractionated Steriotactic Radiosurgery center at Swedish Hospital. They do not have a Cyberknife facility up here yet but the Gamma Knife is pretty similiar so I thought she would be the one here who would know the most about my symptoms. She also knows the folks down at Stanford.

From our consultation, she seems to find my symptoms normal although not common. About 10% of her patients have had symptoms and facial palsy no matter what the dosage or duration of the treatment. Unlike typical acoustic neuroma patients, the tumors of those with NF2 are intertwined with the nerve. Thus when the tumor swells it puts pressure on the nerve and causes the types of symptoms I have been having. In AN patients, the tumor sits on the surface of the nerve and many go through the treatment symptom free.

Her interpretation is that it is also early yet (Although it seems really long for me. When I went through cancer I was in remission by now.). I am at 7 months and normally swelling does not cease until 9 months. In those with symptoms, it can take as long as a year before they subside! I learned from Stanford that it takes a full two years of observation to know whether the tumor has died and the procedure a success.

At any rate, there was a screw up in the delivery of my records and films. The doctor did not have them at the time of our consultation. Instead they got them the day after. The plan was for the neurosurgery and neurology staff from Swedish Hospital to meet on Monday and review my films and discuss my case. I thought the doctor was going to email me back on Monday after they met. However, I have not heard from her yet.

So is no news good news? I unfortunately do not have her email.

I do meet with her again within a month. She ordered for me to have another MRI prior to our meeting which I feel more confident about. I was a little nervous waiting a whole 3 months before getting another MRI scan.

Interpretations of my MRI and the consultations

Over the past few weeks I have been consulting with many top specialists in the area. A while back on a consultation with a neurotologist about my facial palsy problem, we were enlightened that my MRI of January 10th stated that my 2.8 cm tumor that was treated has grown to 4.5 cm! Since she0 had only the MRI report and not the films, the doctor could not confirm this for us. We were horrified, shocked, and speechless! Why hadn't anyone told us this or seen the report and thought something was wrong?

Then we remembered that in a prior report with my HMO over a year ago, a new radiologist had made an error. On the right side I have two tumors that are touching each other. One is the acoustic neuroma (also called a vestibular schwannoma) intertwined with the 8th cranial nerve and a meningioma cushioned between the AN tumor and my brain stem. In a previous report the radiologist had measured both tumors and thought that it was one big tumor! So we have been convincing ourselves that this is again the case.

I emailed Stanford about my theory. I had a CD of my films sent there and the doctor wrote back saying that the tumor has increased by 5 mm. I consulted with two neurosurgeons and from the MRI it cannot be determined if this is actual new growth from the tumor or if it is just swelling of the tumor. The Swedish hospital neurosurgeon told me that he has never seen this much swelling in any of their patients treated with Gamma Knife radiosurgery. However, both he and the Stanford neurosurgeon concurred that the center of the tumor is showing signs of necrosis which is cell death (it appears blackened on the MRI film).

The neurosurgeon I consulted with here leaned toward waiting another 3 months and having another MRI. If I still had symptoms, he felt I would be obligated at that time to have open brain surgery to relieve them. It is not healthy to take steroids for long periods of time (especially in my case because I have been diagnosed with cataracts in both eyes). Prolonged use of steroids can make the cataracts worse and cause glaucoma. All doctors have been concerned about my dependence on steroids to function somewhat normally. They would prefer that I try to tolerate the symptoms with over the counter pain relievers and antinausea medicine.

Okay, so I asked Stanford to look at the films and give me their opinion. It seems 50/50. Here is what the neurosurgeon wrote me:
"We have seen tumors "swell" after radiosurgery as they die from the radiation. This swelling can be confused with tumor growth, and it is impossible on MRI scans to determine the difference between swelling from a dying tumor, and tumor growth. This puts us in a situation where a decision needs to be made on your part.

Option # 1 is to go with the assumption that this is all due to tumor swelling from a dying tumor, as would be supported by the decrease in contrast within the tumor. In this case, the best course of treatment would be another mri scan in 3 months to observe, with thesterioids used as a temporizing measure.

Option #2 would be to assume that the tumor is still alive, and that the increase in size is due to real growth and not swelling. In that situation you may just want to consider open surgical resection for the tumor. The downside of this option is that there is a chance that once surgeons are in there they may find that they are removing a dead tumor, and that the surgery was unnecessary. If on the other hand, they find that the tumor is still alive, then that would mean the radiosurgery failed, and that surgery is the correct option at the present time. As you would expect, there is no way to tell on the current MRI scans whether we are looking at a tumor swelling from a dying tumor or tumor growth.

I have had NF2 patients in which the tumor swelled and then decreased in size over time when we just followed them with MRI scans, and I have had NF2 patients in which the tumor enlarged, and we operated on them only to find live tumor. In your case, I cannot tell at this point which way things are falling."

The University of Washington Neurosurgery and Neurology board also reviewed my films and case. Their opinion was to wait it out and not introduce any surgery into that area or further radiation (the previous plan was to possibly treat the meningioma next to the AN) . Since the tumors are normally slow growing, they felt it was safe to wait for another MRI in 3 months.

Thus my decision has been to wait and have faith.

Food and Drink Tips for NF2 patients

Hi. It seems to be a common occurance that people with NF2 have swallowing difficulties and facial palsy after treatment. As a result, this can make eating and drinking challenging. Here are a few of the things I have learned that are helpful.


With facial palsy it becomes difficult to drink out of water bottles and glasses with a large circumference. Usually I drink 4 glasses of water while eating at indian restaurants. My husband and I went to a buffet and I barely drank one glass of water! The glass was too wide and everytime I tried to take a sip it would embarassingly dribble down the right side of my chin and onto my clothes (good thing I only drink water).

So what is the solution? Ask for a straw. Even sucking through a straw can be challenging so I find that I need to suck on the straw using the left side of my mouth (the unaffected side). Also, I find if I drink out of a standard size water bottle (or like a 20 oz soda bottle) I have to again use the left side of my mouth because I cannot create a tight seal around the bottle openning and the water leaks out of the right side. I find that I need to take small sips of water and I cannot chug down large gulps like I used to. This week I have had both water and soup come out through my nostrils because I tried to swallow too much at one time.

Ok, how about those Nalgene water bottles from REI that all the outdoor enthusiasts use?
I use mine very often and was frustrated that I might have to discontinue the use. Well low and behold we found a solution at REI! For $5 you can buy a new top for the bottle that has a little flip top mechanism that allows you to suck the water out in small proportions. The top is similiar to some shampoo or calamine lotion bottles I have seen.


Crunchy dry things like chips, pretzels and crackers are hard to swallow. I did not realize the cause until I spoke with a neurosurgeon. For whatever reason, there is a decrease in saliva production which makes it difficult to consume large portions or food or drink or things that are dry. There are several times where I choked or had to regurgitate and try to swallow again (sorry if that sounds gross but it is the truth). As a result here are some foods that I find easier:

cream of wheat
soup (chicken noodle, chicken rice, chowder, hot and sour, miso and any thai soup)
ice cream and yogurt (if you can stand the sugar as your taste may change)
apple sauce and cottage cheese
mashed potatoes or mashed squash
soft steamed cauliflower or brocoli with velveeta cheese

Difficult foods to eat when affected by facial palsy are: Slices of pizza, sandwiches, fruits such as apples and nectarines, large burgers, and anything that requires you to open your mouth wide and take a large bite. Solutions: cut into small bite size chunks, chew on one side of the mouth, forgoe these items if you are going out to eat. It takes a very long time to eat when dining out. I have literaly chewed the right side of my mouth to shreds and as a result acquired huge sores due to accidentally chewing my lip on the side with the palsy.


On steroids I cooked marvelous meals and was very motivated. However, off of them I am often tired and unmotivated. So on days I feel good I try to cook intestesting things. For the sick days I stock up on frozen meals, premade meals from Costco, or easy to prepare meals like hamburger or tuna helper.

Acidic foods will upset the stomach and may make you more nauseous. Antiacid tablets, Gavistron and Zantac are helpful.

02-14-05 Daily Report

So how did it go today? Well it was okay. You already read about my headaches. The biggest complication I had today was the pain in my right eye. Many of you are probably not aware that I am suffering from facial palsy on my right side (52% nerve function) although it seems like I can barely move the right side of my face. As a result, it makes closing my right eye more difficult and blinking delayed.

Yesterday when I was washing my face with St. Ives facial cleanser, I could not keep a tight enough seal on my eye lid. Therefore, when I rinsed my face, a microbead from the cleanser got swept into my eye and trapped under the upper eye lid. It stung immediately and I rinsed it to no avail. Harley doused it with Opti-free rinse and it felt a little better after keeping it shut for a half hour.

This morning however, my eye was all red and sore. I kept putting artificial tears in it. I was going to try to drive to Costco in Issaquah (I think about 15-20 miles away) but once I got on the road my eye was burning and I could not read anything out of it. The bright sun was also very irritating in the direction of my travel. So I went back home and drove on the nearly bare country roads to the trail nearby the house (about 6 miles) and in the opposite direction.

I got nauseated again prior to the walk with the dogs. I ate some cottage cheese which seems to help (dairy products seem to calm the stomach). I felt nausea later in the evening after waking from my nap (about 7:30 pm). I seemed to be getting another headache which I think was from the eye pain. So I took some more excedrin. All evening I seemed to be experiencing dizziness and nausea. I have tried reading a book and working at the computer. In addition I have been trying to drink lots of water.

Tomorrow I am making an emergency appointment with the eye doctor as my eye seems to be getting worse and I am putting drops into it every half hour or less. I probably scratched the cornea for the second time.

Tuesday, February 15, 2005

What a Beautiful Day it was!

Well even though I was really tired and had to take a nap before and afterward I was able to enjoy a little time outdoors. It was gorgeous out today! This afternoon I took the dogs for a walk on our usual Snoqualmie-Valley trail out by Carnation. The temperature was about 41 degrees but it felt warmer on our walk. The mountains were so beautiful in the distance with freshly fallen snow on their peaks.

I really miss being in the mountains. The last time I was hiking in the mountains was with my friend Yumi in September and I made a trip to Paradise at Mt. Rainier with my parents. Yumi and I took the dogs to Evergreen mountain one time and to Little Si another. On little Si I fell several times while using hiking poles and I threw up a few times but it was fantastic to make it to the top! I am the type of person that if I start climbing a mountain it is hard to turn back. I long to be at the summit so I kept going even though I was not feel that hot. Soon I hope to return. When I walk the trail with the dogs I see Big Si in the distance and I can't wait to hike up it again!

Poem - The Battered Dream Ship by Edgar Guest

Oh, once I sent a ship to sea,
and Hope was on her bow,
But Time has brought her back to me
and Wisdom's painted now;
Yes, Time has brought me many things
and some of them were good.
And some of them were failure's stings
I little understood.

When Hope set forth the dream was fair,
the sea was calm and blue,
I knew men met with storms out there
and had to ride them through;
But still I dreamed my ship would ride
and weather every blow,
For Hope flings many a truth aside
which Wisdom comes to know.

The storms have come with bitter cold,
I've prayed unto the Lord,
I've had false cargoes in the hold
and thrown them overboard;
I've trimmed my sails to meet the gale,
I've cut my journey short;
With battered hulk and battered sail
at last I've come to port.

'Tis not enough to hope and dream,
for storms will surely rise,
However smooth the sea may seem,
'tis there disaster lies;
And I have learned from time and stress,
that those who ride the wave,
And come at last to happiness
must suffer and be brave.

Oh the Headaches!

Ok I am entering this blog late in the game so I will be trying to play catch up.

I had another headache at 7 am concentrated on the left side of my brain and in the back of my head. I took my friend Excedrin that seems to work like a charm! It takes a half hour to kick in and I get nauseated from the pain while waiting.

From what I understand, I am getting the headaches either from steroid withdrawl or from the tumor swelling. I stopped taking the steroids on January 31st. I was last taking prednisone (before I was on decadron several times since treatment). The day after I stopped the prednisone, the headaches began. The first was concentrated in my sinuses and around my eyes. On average I have two headaches a day at least and take excedrine twice a day. IB-Profen which seemed to be my choice pain reliever prior, is absolutely useless now!

Harley (my husband) seems to think I am having migranes because I have also experienced a few bouts of double vision this week and a couple times (Thursday and Saturday morning) I experienced light flashes in total darkness. The light flashes seemed to happen when I first woke up early in the morning (between 5 and 6:30 am) and blinked my eyes. The best way to describe it is like the feeling you get when a camera flash goes off in your eyes. They only last a second or two and appear to be in a patterned light blue formation. The double vision was apparent while driving and reading captioning on a movie.

Oh yeah, originally the headaches started around my eyes but then they became concentrated at the back of my head. Immediately after each treatment I experienced headaches around my eyes and sinuses which I attributed to the bright California sun as I forgot my sunglasses. Each treatment was 30 minutes with my eyes closed so I thought the sun was too much of a shock for me. I now believe that the sinus headaches were a side effect of the radiation.

It is weird because I had the tumor on the right side treated but I often feel pain mostly on the left side of my brain. Now that I am experiencing them in the back of the head, I can only guess that this is pressure on the brainstem as both tumors are squishing it. On my January MRI, the distance measured between the tumors on either side of my head was 7 mm! My brainstem is between that short distance!