Wednesday, October 31, 2007

We're ready for some treats! Roof! Roof!

More Halloween Fun!

LOL I bought these costumes on sale after the holiday and I have waited a whole entire year excitedly to put them on the dogs. I was concerned about missing all the fun and trying out these costumes I so eagerly anticipated as my surgery was supposed to be at the end of October. Fortunately I did not miss out and dressed them up in both which I had no problems with them what so ever. I was not sure if they would tear them off each other but they were really good and almost acted as if it was a special deal wear them.

The package said large but they must have meant a large small dog as they barely fit as capes! The strap around their bodies had no chance of making it arond. That is why they have strange flaps hanging off their costumes that only fit a third of their body size.

Katie is supposed to be a giraffe and Jake a K-9 cop.

Happy Halloween!

The Blood Clot

Friday morning was my third ultrasound appointment to followup on a blood clot which formed in my right calf after surgery. Even after all my walking it is still there and the same size. However, my doctor phoned that evening to let us know that blood is actually flowing through it now whereas it was not before. I chose the route 3 weeks ago not to take blood thinners as I was on enough medication as it was. The risk of it migrating to my lungs or heart was extremely low and my activity level high. Therefore, I chose to keep active and let it dissipate on its own which it has started doing by allowing blood to pass through it. It will take some time for it to completely go away but if I keep up my walking of 20 miles or more a week and I return to my leg lifting routine at the gym like I did today, it will pass.

Incidentally, friday started off very poorly. I definitely was feeling the lower steroid taper that I had just started the day prior. I got so sick on the ride to the hospital in Kirkland that I started crying when we parked the car. Harley asked me what was wrong and I told him I was just feeling sorry for myself because I hated being sick and did not want to be sick. I had 2 other crying fits the day prior which was my first day at a dose of no steriods. I really hate drug withdrawals but it was tolerable. Tomorrow will be the first day without any medication (steriods or diamox) so hopefully it is not too bad and I will get through it without great difficulty.

Despite really feeling quite crappy in the morning on friday, I managed to find postives in the day to salvage it.
  • Harley got brought me roses in the morning. (very unique: pastel greenish white on the outside and pink on the inside)
  • On the ride to Kirkland I saw the lightly snow capped Olympics mountains because it was such a nice day. I don't think I have seen them since before the surgery.
  • The day was beautiful and sunny.
  • I was feeling better in the afternoon and managed to get out and enjoy the fresh air (and not the cigarette smoke infested air outside the hospital and the two stores we stopped at). I am really glad we live out here where the air is clean and pure. People in the UP would totally understand this. Comforting smells aside from the seasons are woodstoves warming people's houses as cooler weather approaches.
  • On the ride to the trail out in Carnation I was blessed with a gorgeous view of the Cascade mountains and graced with the majestic presence of Mt. Rainier on the walk back.

Oh Sunny Day!

I can't remember a whole lot about the day as it has been a week, but tuesday October 23rd was one of my best days since the surgery. Not too bad for a month post surgery. I don't recall having any bad effects from the medicine or from pain. I just remember it being an incredibly beautiful day which was a very welcome treat in a month of rain. The dogs and I went for a lovely autumn walk on our trail past the Remlinger farm in the late afternoon sun. The temperature read 68 degrees which is the warmest it has been since prior to my surgery in September. I walked in just a light polyester athletic shirt and even unzipped the legs of my convertible hiking pants.If I recall correctly I had a few other satisfying recovery moments for the day.- I was able to get through the day without a nap or head pain.- I was able to shower standing up and do so quite confidentally.- It was my second attempt at driving as far as Carnation (6 miles one way) which worked out well.There is something about Tuesdays where things seem to go well. Tuesday was the day in the hospital after the surgery when I was moved out of ICU to my own room which was incredibly relieving to me. It made my whole week in fact and setup a positive mindframe for my recovery.Today again was a Tuesday and was just as wonderful as the others. I didn't nap today, the sun was out, the dogs and I enjoyed our afternoon stroll at their favorite place (the dog park), I drove for the second time to Redmond (10 miles one way), I made it to the gym for the second time this week (3rd since surgery), and I accomplished standing on the BOSU balance device ( for over a minute when I thought right after surgery it would take many months to work back into doing. I am getting stronger.There is still lots of progress to be made but my hard work prior to the surgery is kicking in and making the recovery faster and better than it may typically be. The doctors were right to go in strong. It was a tough choice deciding when to do the surgery which I would have been tempted to prolong. At the start I thought I could perhaps wait until January or February 2008. Then the first surgeon we consulted with in Seattle told us that it would be too risky to wait that long. Another surgeon agreed that November or October would be a good time as well as a third surgeon. I planned out a good date in October but God had other plans for me to get it done sooner.In any case, I am glad I was not in the hospital last tuesday as originally planned and was able to enjoy the unusually warm fall sunny day on a walk with my dogs. :o)

Monday, October 29, 2007

Surgery Day - 5 weeks ago today

What is surgery day like?

Well lets start from the night before. I did not eat lunch really except for a cheese stick and some chicken salad left that my brother had made. Therefore, I was really starving by the time dinner rolled around. Even though it is suggested to eat light I wanted to take full advantage of enjoying my last meal prior to the hospital and probably not eating for awhile. I probably gorged myself a little too much as the walk up the hill in Portland from the restaurant to my brother's apartment gave me a bit of acid reflux which I really hoped would go away by the next morning.

What did I eat? Something mild and bland? Heck no! I went all out and ate at a Thai restaurant called the "Typhoon". LOL I did not think of the irony of the name until afterward. There I feasted on their delightful "Fall Curry" dish and topped it off with a tantilizing mango raspberry cheesecake.

I also drank lots of water. All food and drink (water even) gets cut off at midnight before the surgery. That kind of stinks because many of us with NF2 have dry mouth and drink water regularly before bed and upon waking. I was allowed to swish water in my mouth and spit it out which is what I had to do. So think about that......almost or near 24 hours without water! Try doing that and then breathing through your mouth also (during surgery a breathing tube is inserted). I guarantee you will end up very parched!

So after dinner we headed back to the hotel to get some sleep before the morning arrived. Did I go to bed early? Not really. It is like planning a wedding where you are concerned about everything being ready and going smoothly. Then of course you lie there kind of thinking about it.

What was to get ready?

We had to be up really early at a time when my brain is not sharp. Therefore, I am a person who has to have everything laid out and ready to go the night before as I am apt to forget something in my grogginess of the wee morning hour.

-Clothes to wear to the hospital which are to be put back in my surgery bag for discharge had to be set out

-All my paperwork and surgery binder with medical records, special instructions for the staff, medication list, family medical history, MRI films, appointment times, contact info, etc.

- books for people to read and myself

- paper pads and pens for communication

- my surgery bag which my husband brings when I am moved to a room out of ICU (pjs, eye drops, carmex, tooth brush, shoes, socks, etc.)

- and then finally making sure all my stuff from the week prior to surgery (in another bag) is packed and ready to load while I am in the hospital

I got to sleep around 11 pm or 12. I think it may have been more 12 am. I had to wake back up at 5 am to arrive the hospital at 6 am. (no breakfast or water....just swishing.....thank goodness I was able to do at least that).

My parents, sister, and our friend KC met us in the hotel lobby as they all stayed at the same place. Thanks to "Lola", the GPS, we were taken on a scenic route and got to the hospital a little late (6:10 am). We rushed in only to find the elevators not running yet. People were yet to arrive. I was sort of frantic and marched up to the security guard and told him I was to have a brain surgery that morning and was supposed to check in at 6 am.

First of all, we were in the wrong place. We went to the wellness center where I had my consultation and pre-op appointment. The surgery was to take place at the hospital which was up on the hill.
Solution - ride the tram up to the top which is free for patients and their families
Second of all, we were able to relax as we were early. The check-in time was 6:30 am (wow. They must have known us and our "lola").

So we got there and checked in on the correct floor. My captioner was there for the check-in appointment where it was confirmed who I was, I got an ID tag, I arranged for tissue donation, and I was given the scoop on the surgery and then given a copy of the Advance Directive to read and fill out if I prefered.

There was another surgery before mine so instead of a morning surgery I was to have an afternoon one. That was fine by me as I am the type of person who prefers to be the last to give presentations. I like to have as much time as possible. I got comfortable with the idea of not having to go to pre-op so soon and change into a gown, more time to read and think about this Advance Directive, and more time to hang out with everyone (Harley-my husband, our friend KC, my sister, my brother and sister-in-law, and my parents).

What is an Advance Directive?
As it states in the brochure, it is a legal document that protects a person's right to make decisions about his or her healthcare. Basically it is a document I sign letting family and medical staff know what my wishes are concerning my medical care (if I want to be put on life support and under what circumstances).

It also entails giving permission for someone to act on my behalf if I am unable to, allocating a secondary representative, and then also having witnesses for this discussion and signatures.

While I read through the whole thing, everyone went down to the cafe for breakfast. When they returned I reviewed with them what I decided and then we did the signatures and turned it in.

I was planning to have more time to relax, wear my comfy fleece pants and hoody my sister got me for my birthday from REI, and to walk around but at 9:30 am they wanted us to move down to pre-op already. I was not anticipating moving down there until 11 am so I was a little upset and did not know what was going on.

I was brought into a room with about 4 beds with curtains around them and the GOWN was set out on the bed. After the nurse left I started to cry. I was not ready! I did not want to change out of my comfortable and warm lounging clothes into the flimsy gown. I wanted to be up and walking around too and not lying in a bed for who knows how long. It was too early for me to be confined to a bed and gown already!

Reluctantly and slowly I changed like a pouty kid not wanting to go to bed and put his or her PJs on. I thought I would be freezing but once in bed with the hospital socks and about 5-7 blankets on me I was warm.

I see why they wanted me to get ready early. There is lots to be done and you want to go in relaxed and not rushed. I had a captioner the whole time (the laptop set on the hospital bed table in front of me) which worked out nicely. Several hospital staff came to ask me questions confirming who I was and the procedure I was to have done. IVs were also inserted on me with success. As a matter of fact, the whole time I was there I do not recall being poked more than once for each blood draw or IV which is pretty amazing (it is very hard to get a vein that will not collapse on me).

Since it was not my own room and there was limited space, I could only have 2 people visit me at a time. Therefore, each family member took turns coming to see me. I was planning to come out of the surgery but still I took the opportunity to say what I may have felt but never expressed.

These visits between hospital staff and family went on until it was time (2:30 pm?). The anestiologist visited me one last time to explain what was going to happen. Reality hit me and I was overcome with emotion 10-15 minutes before they wheeled me away. The whole time I was relatively calm and when they came to tell me it was time I felt like what I would imagine a serviceman or woman at the moment of getting on the plane or boat for the Iraq war.

I did not fly into hesterics. It was more like a momentary light break down where you need a couple minutes to regain your composure before getting back up and marching on. I remember a male nurse and being wheeled down the hall and into the operating room. The walls were an almond color and the paint on the surgery light canisters were bright orange like Halloween. Medical staff were moving around in blue scrubs. Then it was lights out for me.

My HUGE address book project

All of you in my address book received an email from me asking for your contact info and I provided ours. This is a GIGANTIC laborious project for me which I finally started last week. It was supposed to be tackled before the surgery but I just did not get to it in time.

Right now the address book is a huge mess and I discovered over the last year that there are total gaps. There are addresses I thought I entered only to find when I want to send someone a card there is nothing there. Likewise, this has also happened with phone numbers. After my deafness I went through a phase of choosing not to call people as it was a pain. Unfortunately, I got so into the habit of not getting numbers that I didn't know anyone's but my husband's cell phone number which got me into a pickle a few times as that was my only option of someone to call. Since then, I have added a few numbers to my text phone for emergencies. Still, I have had situations where I needed to call someone and then realized I did not have their phone number and they are not into the habit of checking their email regularly. Everyone has different communication needs and methods by which to be contacted.

Further, in the email I provide additional info such as birthdays, anniversaries, pet's names, websites, organizations and groups affiliated with. Composing this I realized I have done lots of stuff and have come across many people. Sorry but the past 3 years I have had some major memory problems (a head full of brain tumors are bound to do that at some point). If we exchanged an email once or twice in that time frame I may not remember so it would be incredibly helpful for you to tell me where our paths have crossed.

If it seems excessive to want to know all this information I want you to know that it is important to me. It is a strategy for me to help remember. When I was student teaching I learned how important it was to remember students' names AND pronounce them correctly. In a quarter there would be 150-160 students' names to memorize which is quite a load. Therefore, I would have to pick something unique and special about each student that would help jog my recall (this strategy is discussed by the coach in the movie "We Are Marshall"). Believe me, students were NOT happy if you could not remember their name or how to pronouce it.

Anyhow, yeah. I need to know your kids names too and their ages so I don't look like a fool thinking you have two girls when you have two boys or that you have babies when they are actually 4 feet tall or more. I want to know too if you are pet people like we are.

Basically I am starting over fresh- clean slate. So even if you think I have the info don't assume. It takes lots of time to try to enter all the info from handwritten or transfer from my current address book format to the new. I am cutting and pasting the info into a word format as I receive it which I can transfer to the new program when complete. Therefore, I need you to put your email address in there also to make it easier.

Here is what I am looking for:

Home Phone
Cell or text phone (please indicate if you can do text messages)
Email addresses (please indicate which you use most often)
Websites or Blogs if any
Partner/Spouse's name
Anniversary if applicable
Pets and names
Kids and names with birthdays

The last thing I forgot to include until someone emailed it to me was my Instant Messenger ID. If you would like mine, please email me. If you would like to communicate that way please also provide your ID so that I can add you to my friends list. Just a note is that I use instant messenger like a phone. My computer is always on and I can get the message when I return.

If you wish not to share with me the last 4 items above that is fine.

Thanks to everyone who has responded already! This is great! I am planning to seperate you into groups such as NF2 members, family, friends, medical contacts, etc. It will take quite awhile to get this established but once set in place it will really make life smoother.

Bit of a Drug Withdrawal Today

Well yesterday went pretty good but today is the off day. I have been on the last week of steroids where I take 1 mg one day and none the next. Today is a day without any and tomorrow is my very last day at a dose of 1 mg (knock on wood if I can tolerate it).

So here is how the evening went:

I fell asleep on the couch again watching Stargate while eating a late dinner to wake at 2 am. Then I tried to go to bed after 3 am. It never did happen and I did not want to take sleeping medication that late. 4 am rolled around and I was up tossing around. Then at 5:30 am I had a hot flash where I had to remove all the blankets and my socks. The hot flash returned again later this morning. All evening/morning I was completely restless spralling out all over the bed in many different positions.

When after 8:30 am rolled around it felt like I had a bad hangover and someone with a giant hand was squeezing my brain in his fist. I last took the pain reliever at about 5 am so it was not time to take it again. I learned through my general doctor that sometimes these headaches come on through sleep as there is a greater concentration of carbon dioxide that builds up in the body while resting. Thus, even though I was really tired and yawning, it was time to get up to get more oxygen to the brain and some relief.

I also get nauseated and have minor episodes of acid relux. This is made better by eating actually so it was time to also get some breakfast.

When I get up I can't dash out of bed. It takes me about a half hour to make the transition. If I get up too fast my body is not ready yet and gets weak and I get light headed (several people with NF2 will probably be familiar with this feeling).

Anyhow, after some nourishment, I had to take a nap again. After being up for over an hour I am feeling much better and am hopeful that this will last throughout the day.

Volkssport Halloween Walk at the Remlinger Farm in Carnation

Milestones for the Week

This is just a short note:

- walked everyday last week covering at least 24 miles; Saturday was my longest trek since the surgery of 6 miles so I am told (went into a volkssport event where I thought I was going to walk a 5 K but Harley told me we walked a 10 K; LOL No wonder I was so tired when I got home and had to nap!)

- drove again by self to Carnation during the day which went well (3-4 times); drove a mile from house to neighborhood close by; tonight drove all the way to Redmond (10 miles) and drove back at night (20 miles total)

- stood up in the shower last Saturday (ok but little uneasy); continued to take a standing shower as normal throughout the week which became easier for my balance each time; my brain and body are learning; the shower seat is not used anymore

- went to gym for the first time last Monday (once this week) and did an upper body workout for toning - good; seemed to help hand weakness (writing is still difficult but doing weights appeared to improve it somewhat)

- more sunny days which made for nice walks :o) - Saw both mountain ranges - Olympics and Cascades which had a little snow on top

Wednesday, October 24, 2007

Cool Post-Surgery Effects

I have experienced a few amazing things after this surgery which I hope are not just temporary from the steroids. These things are so incredibly cool that I must share them.

1) the feeling in my fingertips has returned after 3 years being numb

2) I can walk around with my hands in my pockets without falling over or losing balance like I have over the last 3 years

3) I can take a walk without having to go to the bathroom 15 minutes to a half hour later.

These things may seem rather simple and one may completely take them for granted but I tell you having lost those functions became extremely irritating to me and to have them return has me completely estatic!

The first and second I lost after having the cyberknife in 2004. Several times I felt like I had butter fingers and I would become so frustrated that I would want my hands cut off which I fortunately realized was really stupid and would exacerbate the problem. In college I was phenemonal at dissection and if I wanted to I could have been a surgeon. Lab was my absolute favorite! However, I was a zoology major and animal surgeons do not fare as well as people surgeons for the amount of education and time one puts into it. I was good with my hands in many ways with art being one of them. But after the radiosurgery that all came to a close and putting on a simple necklace and earrings became near impossible. I did learn to do it (certain ones) but it took a long time of practice over and over again taking me 10-15 minutes to get the necklace on. In many cases it just took too long and I would have to have Harley help me. (Gee since surgery I have not worn any jewelry. I should try it out today and see how it works.)

Another thing which prior I totally took for granted and had no idea of was simply slipping my hands in my coat or pants pockets. After cyberknife I did not anticipate this problem at all nor was my body adjusted to or ready for the change. There are several times when I forgot my imbalance putting my hands in my peacoat only to stumble around the store like a drunkard and nearly fall over. It was a hard one to remember as I often casually strolled around public places with my hands in my pockets. I had no idea this was a regular mannerism of mine until I embarassed myself by knocking things over and tripping routinely until I got it through my thick skull not to do it anymore. Yet after the surgery with the weather getting chillier, I naturally did this often while walking without a problem at all. It probably took me a week to have the epiphany of this marvelous change.

Finally what has been a MAJOR pain in my rear is the urgency I have had for YEARS getting worse as the tumor got larger. While in the hospital they had me on continuous IV fluids so I was constantly going every hour or two. But remember that I also was undergoing the swelling phase post surgery. My face was huge. Yet when I came home and started doing my regular walks for an hour, I NEVER had to stop and go to the bathroom! Prior to surgery I had episodes where I would go before leaving the house, 15-30 minutes into the walk, and then I barely made it home to go again after the walk. It was getting absolutely ridiculous and became a daunting annoyance/concern anywhere I went. One particular time last week I actually lasted over 3 hours before needing to use the restroom and that was when drinking lots of fluids and having a water bottle with me on my walk. I still wake up at night and go but I am completely overjoyed to actually complete an hour walk without having urgency. For those who have no idea what it is like, I cannot tell you how freeing it is.

About the Face

Ahh! Sigh. I just finished the facial exercises I am supposed to do each day. I HATE doing them and as such have been lazy about practicing them each day and on days I do follow through I have a major procrastination problem.

After finding a huge sore on my inside lip from chewing on it while numb and then continually biting my lip when eating certain foods where I have to open my mouth wider, it became evident that I need to train the muscles of my face and tongue. In addition, I was due to get a dental cleaning prior to the surgery but had to cancel due to the onset of trigeminal neuralgia. I have approval to do so when ready but I need to get my lower lip on the right side to recede when I open my mouth so it is not covering my teeth and hence getting ripped up.

LOL I have to admit this has not been on my list of priorities. It takes 20 minutes to do one set and I have to stand there and look in the mirror. There are lots of other things I rather be doing and taking a nice walk outside is much more preferable. :o) I have a friend with NF2 who had a similiar experience. In his case he had a stroke and was more concerned with walking again and doing the physical therapy than facial exercises. Both of us have minor cases of facial paralysis that are noticeable but really not that bad. Mine is still better than the worst onset I had 5 months after cyberknife treatment. It took a year for the facial nerve to begin to regenerate and give me back some function. It never did go back to 100% but it was at least acceptable and I could finally drink from a glass again instead of through a straw as I had for a year.

I am not having a drooling problem as I have incredible dry mouth right now. I just noticed today that I have not drooled since surgery. I do have problems with food dripping out of the corner of my mouth and down my right chin where it is numb. To combat this embarassing side effect I have to use napkins quite often and stick to small bites where I can keep the food on my left side and not open my mouth much.

I am sure if one were to take a photo of me I would be kind of disgusted looking at it without a perfect smile. Yet looking in the mirror it has not bothered me and I have other things to concern myself with currently. The surgeon was really careful to protect my facial nerve and not do further damage. The tumor had fused to the nerve so the portion which was adhered to the nerve was left behind. An electrical nerve monitoring device was attached to let the surgical team know how the facial nerve was functioning and when they were getting too close where it could be damaged.

This is fine with me. I was happy to know they took this precaution (a question I asked during the surgery consultation). My goal was to preserve as much of my function as possible to use as long as possible. I am aware that the tumor may grow again. It is not uncommon for people with NF2 to have regrowths and subsequent surgeries to address them. I am a spring chicken really with only having gone through the one surgery so far. Others have had numerous surgeries where going through it is like an old hat.

I am a unique case which I am hoping will prove to work in my favor. As I mentioned before, in July 2004 I chose to initially treat this tumor with a type of radiation called cyberknife radiosurgery. Although we had the misunderstanding that the idea was to kill the tumor (which is does not), the goal was to shut down its DNA replication process that causes the tumor to grow in the first place. It did not happen right away and the tumor continued to expand for 10-11 months after the treatment yet has held stable since then. The tumor is not really dead (from what we were informed) but sick. It still has to potential to grow but currently it is not. For now, the DNA replication is at a standstill which I hope holds. I would very much like not to have to get surgery on this tumor again. So I am really hoping that the cyberknife worked and keeps the residual tumor at bay.

Now the tumor on the left is another issue as it has had no treatment and is not an easy one. It is not as uniform as the one I had surgery on. I completely lost the hearing in that ear within a couple years of diagnosis and in the reports it has been more involved with the inner ear canal. I don't know how the facial nerve will fare with either surgery or cyberknife or both with that one. Once recovered from this surgery (perhaps a year from now) we will cross that bridge when we come to it.

For today Harley told me my goal is to try to win the day. What that means is trying the best to be the best you can and accomplishing what you set out to do. One strategy to achieve this is to try to knock out what you don't want to do first so you can get it over with. LOL Historically I have had difficulty with that and procrastinated things I do not like to do and dragged them out (such as this surgery). So anyway, before I went to bed I did the facial exercises for yesterday as I had not done them at all and then I began the day by doing them after breakfast.

Note: When we were talking about this, I realized how incredibly glad I was to not being having surgery this week as I originally planned (Oct 22nd) and to have gotten it over with a month ago. What a relief! Really it was my surgeon's choice to do it sooner when the trigeminal neuralgia (or God) starting kicking me in the pants. It was the incentive I needed to get it done!

Monday, October 22, 2007

1 month after the surgery

This evening is 1 month since my surgery already. Time goes fast but I am eager and impatient to be recovered. In terms of recovery, time cannot go fast enough. I want to be healed already.

How are things going 1 month after the surgery?

I am still on the steriods. I had to continue them as I got withdrawl headaches from the previous taper. This week I dropped to a dose of 1 mg a day (started on Thursday) which started to affect me over the weekend. I have been taking acetametapin or some type of over the counter pain reliever continuously. Saturday started out pretty good but as it was a long day and I had no nap, the headaches started in the afternoon which were not too bad but reached its apex at 4 am Sunday morning which had me rolling around on the floor. The feeling is like accidentally inhaling high salinty water through your nose while snorkeling where you feel soreness in your sinuses and then behind the eyes (a throbbing pain). If you were a fan of the sci-fi show "Stargate" I imagine this same pain when the Goa'uld use the high tech hand device to suck the essence out of your brain. LOL It appears to produce extreme head pain to the frontal lobe.

Sunday I did not feel too great and rested all day with my afternoon napping (I get burned out at midday and have to nap for an hour or longer). Then I awoke and we walked the dogs at the dog park.

Today I also did the same but for the first time in over a month I went to the gym this morning and did an upper body workout which went really well. I got the approval at my appointment last week to recommence my weight training but limit myself to 30-45 pounds. My body has become really weak from the whole ordeal, the steroid taper, and muscle wasting starting. Thus it felt great to return to lifting and take my body back.

It is approaching time for me to get off the steroids again. My face is again puffy (which is not too bad as it even outs the wrinkles now that I am thin) but it does affect my speech and feels like I have cotton in my cheeks. I have also noticed I have hairs growing on my face again (which occured back in 2004 and 2005). Fortunately the hairs are light in color and not black! As they did prior, I am hoping they fall off and disappear instead of becoming something permanent I have to take care of. Otherwise I will become a hairy pumpkin head in time for Halloween!

The vision is still quirky. It is mostly affected when I look to either side. Sometimes (like today) I have mild bouts of double vision or distorted vision. Harley and I were talking about it today and I realized my brainstem has undergone quite a shift which takes time for my brain to adjust.

Waking up from surgery 1 month ago

Today is the original date my surgery was to be scheduled. However, due to the onset of trigeminal neuralgia on September 11th the surgery was moved to an immediate date of September 24th at about 3 pm.

I remember waking that evening to a convulsing, shivering body and vomiting violently. I recall medical staff rushing around my body while Harley and our friend KC stood by trying to help. Then I recall looking at the clock and a time after 10 pm (in my mind somewhere around 10:25 pm sticks in my mind). Things are vague but I do remember that I did not like waking up in that state. From what I was told I was yelling that I wanted to go home. Because I was sick, I was kept in the recovery room for a couple hours before being moved to ICU. My mom said when the nurse called I was yelling so loud that she could not hear her over the phone.

Harley stayed until about 3 pm (normally family is not allowed in ICU after 8 pm but we got around that). Apparently I must have been out of it because I awoke alone, sick, and in ICU when nobody was there. Prior to the surgery I was worried about this happening as it is not abnormal for me to wake in the middle of the night.

It was rough. Imagine not being able to hear anything, waking up and being horribly sick, your throat is totally dry from not drinking anything in over 12 hours and a breathing tube down your airway for 6 hours, and then what seems like time standing still on a clock in the middle of the night.

I don't know if I pressed the call button. I may have been too weak to. I could see the window to the nurses' station adjacent to my room. I think I just yelled. It does not seem like I slept at all. It was such a long night.

I recall begging for ice chips and for the nurse to write to me on the paper pad as I could not hear and she kept speaking to me. It was just so horrible. I pleaded with her again for both and she wrote to me that I had to stop yelling. Then she finally brought the ice chips and wrote to me that she could not give them to me before because I was sick and needed medicine. I remember getting upset in my mind because the ice chips came with a spoon which dropped on my bed. I had read in a report on hospitals prior to the surgery that germs are on bedding and reusing utinsels which have touched the blankets can encourage infection. Yet I was so damn thirsty that I finally gave up getting a new one and just said the heck with it and used it.

Everyone appeared to move in slow motion on the ICU floor. It seemed to take a long time for anyone to come and when I did see them through the doorway and window they would pass by without any urgency. I must have kept yelling as finally some man wandered into my room and wrote to me "What do you need?". I have to admit that the question totally threw me! I could not stand how sick I was and wanted to be knocked out of my misery. I do not even know what my response was.

Unfortunately there was no putting me out. I think they must need to keep you alert to monitor you. I really am unsure. I was expecting to sleep through it all which never happened. Being awake through it all was unbearable. I just kept looking at the clock while the tinnitus vibrated through my skull. It was so loud in my brain that I forgot I was deaf and thought I was hooked up to all these noisy machines that I wanted to stop so I would get some peace and rest.

Again I begged the nurse. I pleaded with her to please write to me and tell me what was going on. I wanted to know when I could have visitors and see my husband and my family again. I told her I needed to know so I had something to hang on for. And from that moment on I watched the clock and waited. The image of them arriving and me getting out of there is what kept me holding on. At one point I felt so sick and the tinnitus resonated so loudy through my head that I prayed the "Our Father" out loud.

I was so incredibly relieved when told that I was getting out of ICU that morning. A wave of comfort overcame me when my sister showed up and told me that my room out of ICU was ready and I was to be moved. Even though I was still very nauseous and had double vision, the news was all I needed to hear to have a glimmer of hope.

Friday, October 19, 2007

Blustery Fall Day

Ahh! I need an efficient voice recognition software that works or some device to download my brain into a word processing program that will type my thoughts for me. I just cannot keep up with typing/writing the thoughts in my mind.

So once again I will cheat you of all the things I have conjured up and wanted to write about and just give you a synopsis of the day.

Today (Thursday)

Woke up at 9 am, worked on the computer doing lots of communication and organizing of various sources

By the time noon rolled around I was utterly exhausted!
Not ready to eat lunch yet I decided to move onto the next task which is my normal duty of sorting through the mail. HOWEVER........there was not just one day's worth of mail to sort out. It was a heaping pile of a couple weeks worth (maybe more). Of course I had pulled out any cards or medical records for me during those days but the rest I just let pile up. Hence there was a huge pile to sort out of junkmail, ads, bills, nonbill items, account statements, informational stuff, etc. What would normally take me 10 or 15 minutes took me an hour! It was incredibly daunting to sort it and decide what goes and what should stay and what goes in what inbox in the office. Even opening the envelopes was physically exhausting as my arm and chest muscles have succumbed to weakness. Several times I had to lie down from my sitting position on the floor to take a break. Finally, by 1 pm I was finished and rewarded myself with some lunch and soon fell fast asleep for a much needed afternoon nap.

The resting this afternoon really seemed to do me some good as I awoke and the tenderness in my left ear seemed to pass and I did not feel so weak. Honestly, had I felt the same after the nap I would have really had to force myself to get dressed and go for a walk.

Taking an evening stroll (5:15 pm) proved more suitable as the rain subsided and the strong winds which knocked down several branches and even some trees that Harley heard fall lightened up. The deck was absolutely littered a rust orange color with fallen leaves, cedar brush, and helicopter seeds.

Although there was a blustery fall wind in the open fields at the start of the trail, we were protected by the trees for the remainder. It was good that I walked later as there were several large fallen branches across our route from the wind storm earlier in the day. At the time I left the house the wind had died down but if there was wind at the trail I had the dogs to alert me of any falling trees.

This evening was my first time driving by myself any distance over a mile since before the surgery and before I went to Oregon (over a month). I was given the ok to do this from both my neuro-ophthalmalogist and from my physician's (surgeon's) assistant at my follow-up appointment this week. Driving slowly on the country roads by my house to the trail in Carnation seemed fine which is roughly 6 miles. I have a bit of nystagmus problem so looking left and right was hard (my vision is more disoriented on the right). Therefore, when reached the main road through Carnation I had to wait until there were no headlights that I could see from cars coming or I had to take the opportunity to go when they were very far away (no quick peeling out sort of thing). That was during daytime driving.

Once it turns dark is another story. After the walk of course it started to rain and then rained very hard. It also became dark during the time I drove to the post office. Thus, it was much more challenging driving home. The whole way I probably averaged about 25 or 20 miles an hour as the rained distorted the oncoming headlights which caused a glare in my eyes. Further, my right eye flared up and became irritated the entire way causing me to pull over and take a rest near the Nestle Farm. After a short rest I headed back onto the road and some fool decided to flash their brights as they were a car length from me in the oncoming direction! Good thing I was driving slow as I nearly had to bring the truck to a halt! Thank goodness I was almost home! To say the least it was a tense drive home. I cannot be driving around with a sore and irritated eye. It was fine going there but acted up on the return trip. I decided I will not be driving at night for awhile either.

Now that I complained about the driving, I will mention to you how fabulous my walk was. I just love going there! It is this portion of the trail I call my "magic" or "healing" trail. It is magic as there are magical things that happen to me there and are only meant for me. It is healing as it is a place of refuge I come to be with my dogs and nature. I have walked this trail throughout the past 4 years and it has healed me. It is there I talk to God, think, reflect, observe the beauty of what God has made, feel the breezes and rain on my face, witness rainbows and rain falling like diamonds in the sun's rays, I have been blessed by the presence of wildlife, and inhaled the scents of each season and fresh country air into my soul. I am so grateful to have this place....a place to retreat and be alive. There are times I forced myself to go for a walk where I started and did not think I could continue without slumping to the ground in fatigue. By the end of my outing I ended up running. The trail is living and provides for me rejuvination.

If you would like to visit my "magic healing" trail, photos of it from last fall can be found on my other blog at
From the main page look under the photos (click on the down arrow in the white box above the photo) for the album titled "Snoqualmie Valley Trail". Select that title from the menu that appears and click on "View Photos" to see a slide show.
Note: I just got a message that yahoo photos is now closed. Boy yahoo is really going down hill. Therefore, you unfortunately cannot view them anymore and I have to find a new photo host. Sorry about that. I will let you know when I find an alternative.

Tomorrow maybe I will tell you about my incision and show you the photo if I can figure out how to get the photos to download. I was having a problem downloading them a couple weeks ago and then I misplaced my camera which really made me lament. Wednesday I found it again in a purse I had used two weeks ago but had not since so I did not think to look in there. It TOTALLY rocked and made my day to find it again!
Today had me back to taking a few photos again. Hopefully I can figure out the problem so I can share some pictures with you. It has been over a month!!!!!!

Wednesday, October 17, 2007

Midweek Update for 3rd week of October

I am kind of in a fizzled out writing phase.

Let's see. Quick notes until my writing brain returns -

Monday I rested around in my PJs all day until our evening walk at 5 pm. It rained all day so I am not sure if that contributed to my slump of lethary and napping.

It was still drizzling on our walk making it a misty fall stroll but it was very suitable for an October autumn day. It was like jumping into the set of Lord of the Rings and felt rather enchanting and mystical. Again the walk invigorated me and my pace and gait are doing great!

Tuesday we missed our walk as we headed to Portland for my follow-up appointment at Oregon Health and Science University (OHSU). Seeing I forgot my darn medication that I take in the evening and I also had an appointment for another ultrasound Wednesday morning, we headed straight back home afterward only stopping for a bite to eat on the way. The appointment with Steven Giles, who is Dr. Delashaw's physician assistant went very well. I have to go through the notes my captioner Elizabeth sent to me before I provide a report.

This morning (Wednesday) we headed over to Evergreen hospital in Kirkland for my ultrasound. As I mentioned last week, a tight soreness developed in my right calf which we discovered through an ultrasound last week is a small blood clot. Today we were following up to see if it dissipated. It is still there but fortunately not migrating and there is no pain in my leg. I believe the plan is to continue to monitor it and again have another ultrasound in a week.

Also, today is my final day of taking the 2 mg of Decadron which I changed to a morning schedule today (partly so I would feel good throughout the day and the other part so I can get good sleep this evening as I was not able to the past two nights.) For the past two nights I fell asleep early on the couch while watching a program only to wake up hours later with a headache. Both times are the first bad dreams I recall having since the surgery too.

Starting tomorrow I drop down to 1 mg of Decadron for a week which I am hoping works out for me. I really do not like going through steroid withdrawls (bad headaches, nausea, dizziness, and total muscle/body soreness). Let's hope I can kick it this time for good.

That's all for now! The last two days I missed my walk as they were appointment days. Tomorrow I will be back on track so hopefully it does not rain. My eyes have been bothering me (sore and fuzzy feeling) the past couple days and I am kind of off and dizzy. They are the type of days where focusing on something is lots of effort I think because it strains my eyes too much. Perhaps getting some adequate rest tonight will alleviate the problem.

Sunday, October 14, 2007

Things ARe Looking Up

Short note-

I got about 5 hours of sleep last night without waking up and then I slept in for another 2 and a half hours. We were not ready to take out walk at 8 am and fell back asleep. This ended up being a good thing as it is an absolutely beautiful day! We took our walk this afternoon in the sunshine, warm weather (not needing a jacket), and lovely fall color bursting out in the sun.

My concentration now on walking is control and form instead of speed. Yet I am pretty speedy now. As a result of NF2 I tend to drag my feet and wear out the tread and the heels of the shoes. My first pair of Keens are completely torn up like the dogs chewed them and so I wear them around the yard. My second pair is going to and my new Vasques that I just started wearing for hiking in July and walking this fall are already getting the heel tread worn down. Thus I need to work on proper heel to toe form to prevent/lessen this or the shoe companies are going to make a mint off of me!

It was so nice out and I felt so great that I walked the longer distance on the trail that I worked up to doing in an hour of used for running. My form was really good today and I have picked up speed which I attribute to all my training prior to the surgery. I wanted to walk again, walk my dogs, and continue living in my home which has stairs. Hence I had to and have to continue to do my best to attain that goal.

This afternoon we are going to the first ALDA BBQ being held out here. The organization (Association of Late Deafened Adults - which means open to anyone who has developed and hearing loss later in life after learning spoken language) just formed in April. At the beginning of my hearing loss in 1999 this group was active but then dissipated for whatever reason. Now it is coming alive once again since that the president has moved back to Seattle after leaving the area and living in California for a number of years.

With that I have to go get ready. Let's hope this improvement holds. Yesterday was my 2 mg steroid day and today I take 1 mg. Usually I start not feeling too well and getting headaches later in the day. So far so good. I hope that this will continue as I am weaned off the medication. I would venture to say that today is the best I have felt since the surgery. My hand is also getting stronger, writing improving, my tongue tingling on the right side, and parts of my head, face, and mouth becoming unnumb. Earlier in the week I realized I had been chewing on my lip unknowingly as the day it became unnunb I discovered a huge sore! Since I have had to be careful about what I am chewing and the size of things I put in my mouth so I am not knawing on my lip.

Ok gotta go! Have a pleasant Sunday! :o)

Saturday, October 13, 2007

It's A Record!


I finally did it. 2 weeks and 4 days of only 3 hours of sleep or less at a time, and last night the sleepless streak was broken! Granted I did wake up once during the evening to use the restroom after 3 hours but I went back to bed and continued to sleep over 4 hours more uninterupted. That is over 7 hours of sleep with waking up once which my body has not been able to achieve since the surgery. It feels so good to have finally gotten some rest.

Of course yesterday was my 1 mg dosage of Decadron (the steroids) and today is my 2mg dosage. So let's hope I get the same or better sleeping results tonight. If not, I will have to increase the sleeping pill dosage from 1/2 pill to a full pill.

For anyone having sleeping difficulties, Ambien is what my doctor prescribed to me. You need to get a prescription for it. The generic name which will cost you less at the pharmacy is Zolpiden Tartrate 10 mg tablets.

Calm after the storn

Today was a day of total resting. I probably did the most resting I have done since the surgery. If it had not been for having to go for a walk (my responsibility due to this leg clot and taking care of myself and also needing to walk Katie and Jake), I would not have made it out of my PJs at all.

The best I can describe it for you is imagine you are on a sailing journey and are hit by a white squall which is an intense and sudden whorlwind of a storm. Everything is hectic and you must put all your skills and preparations together to make it through in one piece. You are on constant alert until it passes which can be pretty stessful and you must be decisive and correct in your decision making if you are to survive. Then once it passes and the weather is calm, you can relax and be relieved. There is a period of no wind as the sun breaks through the clouds. You have a moment of peace before you set your sails again to continue on your journey. That moment for me was this morning.

I missed the morning walk scheduled for 8:00 as I did not wake until about 8:30 am. It was dreary and raining outside anyway which did not motivate me to want to get out of my warm dry pjs and comfy daybed. Thus we bargained for an alternative scheduled time for our walk which ended up being from 5-6 pm. By then it turned into a beautiful dry fall day. The walk was lovely with the sun shining through the trees colored shades of yellow, rust, green, and burned orange and crispy fallen leaves covering the trail.

I was also able to finish watching the movie I started on Wednesday which I found to be incredibly inspirational and uplifting. It really does the soul good to watch something positive......even better when it is a true story. For those that are interested, the movie is "We are Marshall" starring Matthew Fox (from the tv series Lost and prior from the popular tv drama Party of 5) and Matthew McConaughey who is in a plethora of movies. Both are excellent actors and make a fabulous pairing in this movie.

It was a good day of rest as I greatly needed it and I still don't feel so hot as the steroids need to kick in. I am still having headaches, muscle soreness, not really much of an appetite although I do make certain I eat all meals (the past two days have been chicken and soup days), a little dizzy, and slightly nauseated. Let's hope I am successful in getting good rest tonight and start feeling better tomorrow. Tomorrow (Saturday) is planned to be a chilling out rest day too. I have no plans of going anywhere (aside from our walk which we have scheduled for the afternoon).

The weights

Weight is fluctuating but I am eating regularily very healthily with snacks.

roughly from what I remember

120.6 Sunday
116.4 Monday
123 (fully dressed on Tuesday)
118.8 Wednesday
119.6 Thursday
120.6 Friday

The Scoop

Thursday was my 3rd appointment since being out of the hospital. This time we traveled to North Seattle to see my general internist who is also my primary doctor. It was one the best appointments I ever had. We learned that the blood clot I have in my right leg is very small and will most likely dissipate on its own with my current activity level. I walk as briskly as I can for an hour each day. There is a 2% chance that it can travel to my heart and lungs but given the fact that it is so small and it feels better with activity, we are going to monitor it. There is a 20% chance that a clot can form after having a surgery. While in the hospital devices which mechanically squeezed my lower legs were put on to prevent clots from happening. I recall my great grandmother had problems with blood clots so it is possible that I may have a genetic predisposition to them. Later we can do a genetic test to see if this is the case and be particularly cautious about this issue during the next surgery. For now, I have chosen not to take the blood thinners and to monitor the leg by having a second ultrasound next week. Currently there is minor swelling of the leg (it is 1cm larger) but I am not out of breath or coughing up blood which is a good sign. Also, the leg has continued to feel better with exercise. If it is sore I am to elevate it and if any problems I am to contact the doctor. He will be checking his email throughout the weekend.

As a matter of fact, Thursday morning is the first time I tackled the big hill in Daniel’s ranch (photos on my other blog; see the scroll down menu under photos from the top page of the following link: ). Katie and Jake are SO ELATED to have me home and to be walking with them. I was tired going up the hill but things started to really kick in on the way down and my pace is not much slower then what I usually do. Normally I tackle this hill about 3 times but instead today I just walked up it once and covered the entire neighborhood which I think takes about 45 minutes at a fast pace and took me about 50-55 minutes in recovery.

The morning started out good but still I was only sleeping about 3 hours or less at a time. Along the way to the afternoon appointment I started getting a headache and despite taking over the counter pain reliever, the frontal head pain intensified. By the time I made it to the appointment I had a bothersome throbbing head pain accompanied by some sharp jabs. My neuro-ophthalmologist did not feel the headaches were attributed to pressure around the eyes. My primary doctor, Dr. Taagen, felt that the headaches could be from too quick of a steroid taper. 2mg of Decadron is the equivalent of 15 mg of Prednisone. Thus, ending at this dose for only a day may have been too fast of a taper and too high of a dose for me to end with. I just do not do well with medications! Thus, the decision was made to go back on the steroids and be weaned off of them more gradually. The plan is to alternate between 2 mg and 1 mg daily for 1 week, then 1 mg only for the second week, and to alternate 1 mg every other day for the third week.

I have to say that by the time we got home yesterday I really felt like crap. It got worse and I had no choice but to start the steroids again when I got home. It takes awhile to kick in so I was rather sick yesterday evening.

As for the sleep, I have not gotten adequate rest now for almost 3 weeks which is also probably contributing to not doing so well. Therefore, I asked for something to help allow me to sleep. Dr. Taagen prescribed to me Ambien which are sleeping pills. I am to try out ½ a pill and if that is not working I take 1 pill. Even with a ½ pill I woke up 3 times during an 8 hour sleeping period last night. I will try ½ pill again tonight and if not successful I will take a full pill.

That is it for Thursday and the update of my appointment. Harley got the movie “Fantastic 4” but again I was unsuccessful in watching the full movie. The back and forth eye movement of reading the captioned words make me tired and sick. I can only do it for so long and then I have to sleep or do something else. In the case of last night, I had to rest my eyes and fall asleep for 20 minutes or longer.

Thursday, October 11, 2007

Another Day at Another Hospital

I missed blogging yesterday as it was another day committed to going from home for another medical appointment and then doing errands in the same city. By the time I came home I was tapped out and needed a nap. When I awoke it was time t0 make some quick dinner and we watched part of a movie (a very good one) before I decided it was time to get going. Incidentally, I have not been able to watch a full movie (with exception of the final in Lord of the Rings trilogy) since I first came home. The past few days I have been able to sit thru and watch a single Stargate episode. I either fall asleep or I can't watch the captioning for that long (No it is not small. We have a huge tv.)

After the movie I spent a little time at the computer before I decided to write out some birthday cards. Although it takes a very long time, today I am able to legibly hand write out some cards. After writing out 5 and even taking Excedrin I got a horrible headache that made me sick. My vision became blurred and I even had a hard time deciphering the zip codes in my address book. Thus, I had to lie down and take another nap to get some sort of relief.

Not wanting to wake Harley with my moaning and rocking back and forth I went downstairs and feel asleep on the day bed waking a little while ago (just before 4 am). As a matter of fact I am dressed and have not done the nightly grooming yet. My mouth tastes really horrible (a concoction of spinnach feta pizza and orange sherbet for dinner).

Oh yeah.....the post title talks about the day.

Well Sunday I woke up with a mysterious tight soreness in my right calf (lower leg muscle) but I had not done anything to injure it. It was unlike a muscle cramp (charlie horse) which I have had on numerous occassions before from not walking regularily, low potassium, and dehydration. Stretching it did not seem to help and the muscle soreness continued through Monday and Tuesday.

Monday I emailed my surgeon and general internist (primary doctor) about it. Both were concerned that I could possibly have a blood clot and that I should get an ultrasound done of the leg. Seeing my general internist is way over in North Seattle and was not working on Tuesday, he arranged with my husband over the phone on Tuesday for me to have the ultrasound done closer to home at the nearby town of Kirkland at Evergreen Hospital. The soonest they could get me in was this morning. Thus Kirkland is where we spent today.

The ultrasound was kind of neat (a painless procedure where they just rub a handheld instrument over your body with gel). While doing so, the image of the inside of your body is viewed on a little tv monitor. I do indeed have a blood clot but fortunately it is very tiny. Tomorrow we will go to Seattle to see my general internist and find out the full scoop.

After the appointment we ran errands in Kirkland starting at doing some ethnic and specialty food shopping at Trader Joe's where one can find very unique things. I found some carrot zucchini bread, fibrous bran apple cranberry and also raspberry blueberry bran muffins, indian food, whole wheat and blue corn tortilla chips, dried unsweetened mangos and flat bananas, and specialty soups like apple butternut squash to name a few.

For lunch we treated ourselves to the Olive Garden (Kirkland is the closest location to us) which I cannot even remember was the last time we were there together. The last time I was at the Olive Garden is when my sister and I took a trip to Naples, Florida in March to visit our aunt. I had the new chicken and potatoe knocci dish which was wonderful and Harley's grilled steak and spinnach linguini was scrumptous as well. By the way, the salad bowl (even though I normally do not eat iceberg lettuce) hit the spot as I have terrible dry mouth right now. The crisp lettuce (like celery sticks that I have come to enjoy post cyberknife treatment) is very thirst quenching.

From there we went to Costco to do our stocking up. Normally I would go by myself and get these things but I am limited in lifting. We get our dog food at Costco which comes in 40 pound bags. I can only lift 10 lbs. so picking up the dog food or carrying anything heavy is out. We got two bags so we should be good until December. While we were there of course we stocked up on our other things too so we should be all set for our Costco shopping for the month.

By the time we made it back home it was already 4:30 pm and it was time for me to take a much needed nap. I don't do straight sleep yet. Instead, I sustain on a series of several naps which can be from an hour long to 3 0r 4 hours long. My body and head tell me when it is time to take another nap. I will take another one now as it is almost 5 am and I am scheduled for our walk at 8 am.

Have a great thursday and wish me a pain free day! ;o)

Tuesday, October 09, 2007

Hitting the Wall

Today was a rough day which was not a surprise and can be expected. As of yesterday it has been 2 weeks since the surgery and I have not gotten more than 3 hours of straight through sleep. My body and brain are really exhausted at this point. Further, it is the 3rd day off of steroids so I am coming down now. My body hurts and is very weak like I have the flu or ran unexpectedly for 6 miles without stretching before or after. In addition, I have been having headaches today and just generally feeling like a crap bag.

This morning was my appointment to see the neuro-ophthalmalogist for follow-up (This appointment was arranged and scheduled before the surgery. I go there every 4 to 6 months for a check-up which includes your standard vision test, testing color vision, a peripheral field vision test, and then dialating the eyes and looking into the nerve behind the eye to see if they are swollen).

Unfortunately the captioner did not show up. Fortunately Harley came to the appointment with me and was able to coordinate things. I have to admit that I was feeling like such crap that I let him handle checking me in. When I got there I had a massive frontal headache and my eyes were sore. I could not concentrate on anything and because we attained a newer vehicle just before surgery I did not have any pain relievers stocked in the glove box yet (normally I have an emergency supply stash of things that come in handy when needed). Thus, by the time we got there an hour later I was not feeling too fine. Closing my eyes and applying a cool water bottle I brought with gave me some sort of relief. I really was not in the mood to handle any glitches in the appointment. The fatigue and head pain became so intense that I had a hard time holding back crying (without tears) in the waiting room. I had no cares what others thought. While I tried to relax and find relief, Harley called around to see what was happening with providing me an accommodation.

It is a good thing my brain and memory still are in top shape because that is what had to take over. A nice woman named Linda came from interpreter services (yet she is not a captioner and a foreign language interpreter instead). She did the best she could do to type up instructions for me of what I was supposed to do. Because I have been going to these appointments for over 2 years now, I am familiar with the tests and routine and was able to know what was supposed to happen. Further, at this point I am pretty prepared and brought the entire surgery binder with me which included all my MRI CDs, written reports, basically all the info except the OHSU records post surgery that I have to attain on my visit next week, and a picture of the image showing which tumors have been debulked and removed. The resident doctor who is unfamiliar with me wanted all this information so it was good that I had it with and was ready.

For all the tests I know the drill by now. The visual field test is long and boring and takes focus and concentration to do. I was told that I did great and I have actually improved on doing the test since when my first visit back in 2005.
- My eyes have a nystagmus and want to shift around. To do this test I have to keep the eye focused on a yellow light and press a button when I see peripheral lights flash in the area outside the yellow light. For me, it is really hard to keep focused on the yellow light and not let my eye wander to each flash of peripheral white light. Hence, I must really concentrate hard to keep my eye steady and focused only on the yellow light. It is rather draining and I am always relieved to be finished with the test.

After the visual field test we went back into the waiting room until the resident doctor was ready for us. At this point my eyes were dilated and I could not read regular font. We found that 48 point bold font is still readable and works for me. I would have totally guessed it was 24 point font which is half of what it actually was!

I realized I could not read the questions I typed up in 16 point font. Thus, I had to hand them to Harley and ask him to address them to the doctor. With the lack of a captioner, 3-4 people speaking in a room (Harley and I asking questions, the neuro-ophthalmalogist and the resident doctor - he never did tell us his name or shake our hand), and my inability to read my own questions, the appointment did not go efficiently. Without real time captioning it is very difficult for me to follow the conversation and know when I can or can't speak or when someone is finished speaking. Linda did the best she could but it was not quick enough for me to follow the flow of the conversation or to know what was going on. Further, with a dedicated captioner, everything is typed quickly and all medical terms are supposed to be in the dictionary. Basically it just did not go smoothly and I did not get all my questions answered to my satisfaction.

Here is the gist I was able to attain:

Scar tissue (gliosis) is seen on the optic nerves from prior optic swelling.

The optic nerves look slightly elevated = trace papilledema.

Stay on 500 mg of diamox.

There may still be papilledema. The only way to find out is to take me off the medicine. (We came to the determination that I will take 500 mg of diamox for 3 weeks and then try 3 weeks without it and look at the nerves at that time to see if they start swelling again. If so, the papilledema has returned and I guess I can just stay on the medication indefinitely. The doctor was opposed to a shunt or surgery to alleviate the problem as the shunt does not always work and increases the risk of infection.)

Note - if you are just learning of this now, the papilledema (optic nerve swelling) is the result of spinal fluid blockage in the 4th ventricle of the brainstem. It is the opinion of the neuro-ophthalmalogist that the tumor which was removed was pressing on the brainstem and may have been the cause of this blockage. That is my understanding. My hope is that with the debulking of the large tumor and removal of the one next to it, the pressure may be relieved and the papilledema will not return once off the medicine. We will see. Otherwise it sounds like my only option is to stay on the medication for life.

I have 20/20 vision.

My understanding - I can't read things unless my head is very still because my eyes are shifting around.

This is from the nystagmus. Nothing can be done about it.

The nystagmus is worse since surgery. Will it improve?

Don't know.Wait and see.

Based on my vision tests today I can drive now.

The headaches I am having are not from the pressure.

It can take 3-6 months to recover from a brain surgery like mine. I am still recovering so see how it goes.

The enlarged blood vessel above my eye is not from surgery. ?? It was not there before surgery so that is really a mystery. It seems to have gone down now though as compared to when I was in the hospital. I did not notice it until I could see it in the mirror at home last week. Maybe it just popped out from the steroids.

After the appointment (appointment check-in scheduled for 9:30 am and we finished after 1 pm) we were pretty hungry. Even though I was really tired it is my responsibility to walk each day. Walking helps me heal and also I need it for my legs so they don't cramp up. Being familiar with the University of Washington area from graduate school, I know my way around well. We had to wait an hour and a half for the medical records to be ready for us to pick up therefore we planned to walk to the University ave where there are a plethora of ethnic restaurants. We had it on the brain to eat indian (which is actually the only thing shown to suppress these dang tumors in mice bred with the NF2 gene - the chemical curicumin found in tumeric and curry). LOL Therefore, we always have a good excuse to endulge our senses in the delightful spicy cuisine (hint - it also helps to clean out your system too!). Today we tried a South Indian food which is a little different flare from what we normally eat.

I was more tired on the walk back but made it. After we picked up the records and started driving home I was totally sapped out. It has been 2 weeks since the brain surgery and I want to be recovered already. I want life to go on as normal and be productive again and not focused on all this medical stuff. I actually started crying (and could produce very minimal tears in my left eye). I am just totally exhausted! It has been lots of work and there will forever be lots of work on this. It is a lifetime condition with no cure which is very daunting at times. I felt like I pulled an all nighter cramming for a final exam. I needed a moment to be emotional about it as I have been running full steam ahead directing everything. At a certain point I have had to compartmenalize my feelings and emotions in order to get things done and look at it from a research perspective. Back in May and perhaps June is when I took the time to be sad, scared and get over it. I had moments of feeling utter dispair and breaking down when alone in the gym at night or on the trail with my dogs. That is the way it has to be. You allow yourself the room to grieve or be sad and then you put it away so you can forge ahead and do what must be done.

I imagine I picked up this skill from having cancer at a young adult age (just turned 21). There is a point when you get the shocking news and it takes time to digest. Then you fall and perhaps stub your knee or even tear it open. At some point you must decide to pick yourself back up and bear the pain if you are going to continue on. It is how people survive. It is how one climbs a mountain. It is how one decides to cut off their arm and walk out of the desolate wilderness to go on. This is my life.

Ever so often when those of us get exhausted and burned out, we need a pause......a time to release all that has been pent up and pushed down inside for us to "keeping climbing" and "keep pushing". Now is the time for me that I will take a rest so that I can continue my odyssey.

2 weeks post surgery - end of the steroid taper

Yesterday was day 2 off of the steroids and I can really feel it! It is not so bad yet as it was when I went off of them finally in 2005. I was on them so many times and so long that I am very familiar with the side effects and can anticipate how they will make me feel at each point. As such, I am granted the opportunity to plan accordingly to schedule maximum productivity and periods of rest. The first week of course is good and was some relief from the trigeminal neuralgia. I started taking 4 mg a day on September 11th. I took this dosage until the surgery when they increased the amount which I am unsure what I took the week in the hospital. I have to get all the records from them when I visit for my follow-up appointment in Portland next Tuesday. Since coming home, I have been on a steroid taper (that means they gradually decrease the dose until I stop).

Here was my taper schedule for those of you who will also need to take them for surgeries:

Decadron Taper Instructions (a nice sheet they typed up for me with large font which made it easier to read and follow)

4 mg dose at 5 pm 9-28

4 mg every 8 hours for two days
(starting 9/29 at midnight)

2 mg every 8 hours for two days
(start 10/01 at midnight)

2 mg every 12 hours for two days
(start 10/03 at 0800)

2 mg once a day for two days
(start 10/05 at 9 pm)

I would highly suggest organizing things and delegating someone to record and keep track of your meds. When you first come home from the hospital things can still be confusing. I got really frustrated and needed help. It is EXTREMELY difficult to write after the brain surgery and you may have vision problems that make it hard too. I did my best to record things by hand which took a long time. Today I finally noticed that my handwriting is improving if I write very slowly and print. I am sure nobody but me can read my notes each day and I will have to type them up. I still cannot write well at all and hence my delay in writing thank you cards to people. I am not sure how long it is going to take to be able to write again and this week an NF2 friend reminded me that I am probably going to have to work with an occupational therapist.

Anyway, I am sort of getting off on a tangent. What needed to happen after 2 or 3 days of me trying to record stuff on a notepad is that Harley had to come up with a system that was easy for me to follow and keep track of my meds each day. With my frustration he did some very quick thinking and developed another binder to keep things in where I would open to the page for the day of the medicines and times I needed to take them. I would wake up, eat breakfast, take the first medication as scheduled, record my weight for the day and food eaten with the medicine, and then jot down any notes on the back of the sheet (a regular 8 by 11 sheet of paper). When I took the medicines I checked them off with a red pen and also recorded my notes with red pen (distinguishing it from the black writing and making it easier to read and glance at). We developed this on the fly but if you can, it would be ideal to have someone create a computer template of what you need to put in the binder (it is neater).

It would be better to type out your notes or have someone do it for you. However, I think it is important to write something everyday so that you can see your progress with your handwriting and also practice. It is going to take practice to get the coordination back. My surgery was on the same side as my dominant hand which is weak. Hence, my handwriting has been affected. It was also affected after the cyberknife treatment in 2004 which has taken 3 years for me to improve but it was not as bad. This time will take lots of work. Fortunately, I am able to type and find it easier.

What I would recommend is NOT handwriting your important notes such as meds, food, weight, any problems, how you feel, etc. All of that is crucial for looking back and tracking your progress. If you can type, type it out and put it in the binder. What you write is maybe practice copying something from a book. Maybe you can try to write the same thing everyday so you can see how you are improving (I just thought of that and will have to start tomorrow).

In addition to the notes I mentioned above, I added print outs of any emails I wrote that day or IM messages providing an update on how I was doing. You will want to look back at this later. Further, I typed up tasks lists of things to accomplish each day which are also good for looking back to help you remember what you did that day. There was one day the power was completely shut off from 8 am to 6 pm. I did not know until it went off at 8 am. Then Harley showed me the letter from the electric company. I added the letter to this binder also for a couple reasons a) to keep track of the day b) for future reference if it happens again and who to contact as it could pose a complication in the future (there is a contact if doing such will cause a danger….think of a person on a respirator who needs power).

Side Effects
I was on the steroids just the right amount of time. The bad side effects happen after taking them 3 weeks. I started on September 11th and ended on October 5th which is 3 weeks and 3 days (the sweet spot). Hence, I was able to get a mild relief to the trigeminal neuralgia (still had episodes but not as severe as the first couple) until the surgery the following Monday. After the surgery I was able to be on them to reduce the swelling in the brain for the second week and the third week I felt well to accomplish what I needed to in order to rest for the 4th week. It is all about timing which is really important. The steroids MUST be taken on schedule and at the correct times. You don’t want to miss a dose or take them haphazardly. I know all this from taking them repeatedly in 2004 and 2005. When you take them longer it really starts to toy with your body and the negative side effects come out. Then going off of them is very difficult and can result in a real drug withdrawal just like an addict has (not fun).

My side effects are pretty mild this time but did start to show up right when going off.

Side effects-

- easy bruising which has occured since the beginning of taking them

· Swelling of puffiness of the face (which this time isn’t too bad as I look younger without so many wrinkles :o) )

· With the swelling of the face is facial soreness from being swollen and the feeling like you are a chipmunk or have cotton in your jaw

· Acne on the shoulders and back as well as the face (mostly chin area)

· Rutty and rough skin on the face

· Gas and bloating

· Heartburn which came out today after eating indian food

· Extreme dry mouth (appeared Sunday and has become enhanced; need to keep a water bottle with at all times and use biotene fake saliva)

· Dry skin (hands and feet) started a week or so ago. I use skin repair lotion on the hands and body butter on the feet from Bath and Body shop.

- Cuts developing on the hands and fingers which began last week and are healing now that I am off the steroids.

· Lack of sleep I have experienced since the surgery. I am very tired today and yesterday which is probably a combination of not getting rest for 2 weeks and coming down off the steroids. I remember being really productive on the steroids which I was able to accomplish last week. I planned it out that way with the intent to rest during this week. It is still taking some time to come down where I can get at least 5-6 hours of straight sleep and reach REM. Hopefully that will happen tonight after I finish this. Thus far I think the record is 3 or 3.5 hours of straight sleep before waking again. I take several small naps.

With that it is time for me to hit the hay and try to get some rest.

Monday, October 08, 2007

First Appointment Since Leaving Hospital

This morning I visit with my neuro-ophthalmalogist for follow-up. The appointment was actually made and scheduled prior to the original surgery date (I was due for a checkup which happens every 4-6 months). It just so happens that it conveniently works out right after surgery which is actually better.

As you are aware, I had lots of problems with double vision after the surgery. I have been assured by many with NF2 who have gone through the surgery themselves that this is normal to happen. Further, Dr. Delashaw (the surgeon) has also informed me that it is normal for the double vision to occur after a craniotomy as the brainstem has been shifted and needs time to adjust.

Following are questions that we will address at the appointment today:

Questions for UW eye appointment October 9th, 2007

How do the visual field test, vision tests, and optic nerves look as compared to prior to surgery?

Now that I have gone through the surgery, is it likely that the papilledema has subsided?

At OHSU they wanted me to try going off the Diamox for a trial period (Per Dr. Eagan’s request). How long will we try this for?

What do we do if the papilledema returns?

If the papilledema returns, will I have to explore surgery to relieve intracranial pressure? If so, what would that entail? How soon would I need to make a decision about it?

After the surgery I had lots of problems with double vision which has gotten better. Still I get double vision when tired, looking down, or looking to the right. Headaches ensue when using the computer and reading. Will this continue or eventually subside? How long will it take to improve?

What happens if my vision does not return back to normal? What options are available?

The nystagmus is worsened (more in the right side). Will it improve over time?

How long before you feel I can safely drive?

Can I expect the vision problems/double vision to happen when treating the next tumor (vestibular schwannoma on the left side) via surgery or radiosurgery?

What happens if the vision complications from the next treatment are permanent? What can be done?

Will tear production ever return?

An enlarged blood vessel has appeared above my right eye that was not there before surgery. What is causing it and will it stay enlarged now?

Friday, October 05, 2007

Petering out

This is going to be short as I have hit the point of lethargy now. Hopefully that means I will finally get some real rest after 2 weeks with none. Seriously I do not think I have slept longer than 2-3 hours consistently (if even that long) since being knocked unconscious during the craniotomy. I was concerned prior but was expecting to get more rest which did not happen.

Today is the lowest dose of steroids I have taken since the trigeminal neuralgia episodes leading up to a much sooner surgery. Therefore I have been on them about 3 weeks and tomorrow is the final day of the taper schedule. Sunday I will be off of steroids and perhaps I will have a good week of sleep which I direly need right now.

Things have been getting better and better everyday and it is almost hard to fathom I had a brain surgery. The concept has not fully settled in with me yet.

Although tired and mentally groggy today I still was able to focus on tasks and walk two laps around Marymoor dog park which is HUGE! My mom says I can walk in a straight line and I also was able to keep my pockets in my pants during most of our walk. I keep focused forward and concentrate on going straight ahead as turning the head either way will disorient me. It sure is nice to get outside in the fresh air and the dogs love the treat of going to the park. There I can concentrate on my footing while they run around and play.

Eating is sure nice. Eating is sweet as a matter of fact after not being able to eat for so long. I am sure glad to have an appetite back! I hated being nauseated! My weight is starting to pick up now that I can eat normally and this afternoon I made it to 119 pounds! (Chuckle) I get pretty hungry too!

Good news! My camera was missing and we located it yesterday morning in my gym bag we brought! I was so happy and enjoyed looking back at all the good times we had leading up to the surgery. I also was happy so I could finally take photos of my wellness table I set up. All the wonderful cards, flowers, and balloons I have displayed on a pretty table cloth in the kitchen so I have good vibes and cheer when I wake each morning. I wanted to post a picture but it seems I am having trouble downloading the photos right now.

This will probably have to wait until Sunday evening as tomorrow is my first ALDA (Association of Late Deafened Adults) meeting an hour south of here. My dad will be driving up from Oregon to meet us and then he and mom will head back home Sunday. She has been with us 2 weeks (1 in the hospital and 1 here at our house). She has been really amazing in staying with me and helping out. I could not have gone through all this without her and I cannot fathom those who undergo surgery alone. It must be really scary. Harley and I greatly appreciate her being here and all the love, help, and support of friends and family. We cannot thank you enough!

Wednesday, October 03, 2007

Is it a weighty issue?

The weight was something carefully planned out and thought about too. I knew that in periods of illness and hospital stays that there can be a good degree of muscle wasting. As such, I began to prepare for this at the beginning of 2007.

As you are aware I worked up my endurance stamina by training for and walking the 26.2 mile Seattle marathon in November 2006. After the endurance training I had planned to shift my training focus and to pack on more muscle for balance improvement, hopefully a return to scuba diving, a return to hiking, and yes I have been aware that brain surgery is emminent at some point. It was just a question of when and timing.

Although in my adult life I never considered myself obese in anyway...just needing to lose a few pounds but very healthy and strong, I reached an apex weight of 172 in 1997. From there I fluctuated as most people do until I finished grad school in 2004. Look back at my graduation photo in the archives of 2005.

Amazingly I am the weight now that I was in Junior High or 14 years old! This morning I checked in at 118.4 lbs. I have not owned a full length mirror since we moved here in 2003 and I bought one today and was rather surprised.

I am back to eating fully though which is really nice. I did not at all enjoy being sick, nauseated, and vomiting. It is one thing I really can't stand.

At any rate I sort of planned for a weight fluctuation of 10 lbs in either direction. After the cyberknife radiosurgery in 2004 I gained 12 lbs (I think bringing me to 165) from taking the steroids. I had planned for this gain in weight and have been maintaining between 125 to 129 lbs. Realistically I did not plan to go that much lower but as long as I am where I am at is ok. I will put it back on quickly when I start working out again. LOL My hope is that the fat I have not been able to lose gets sucked off and eaten instead of the muscle I have been building. Then hopefully I will have an easier time becoming more toned and less flab. (hehe)

Weights since hospital

One my first time getting out of bed and walking around the hall there - 123.6 or .4
Next day I was wearing my heavy duty Vasque cross trainers - 124.6

Then at home I have recorded
9-29 118.2
10-01 118.4 morning; evening 120.8
10-02 119.4
10-03 118.6

Instructions at Home

I am a little behind here with catching you up but things are going really well! It has taken 3 years for me to realistically prepare for this (or since July 1999 if you look at that as the time I was told I have brain tumors). In any case, all the work and preparation has paid off over the years. I am actually doing better than I could have imagined on that very first day I was told I don't have one brain tumor but several. I feel well like I went to a very important interview, event, test or whatever and was truly confident and prepared. PREPARE I cannot stop thinking of or using that word. It is so important.

Before I get lost in a ramble as I could go on a long diatribe about the details of my preparation for surgery, let me lie out for you here the nice typed out and easy to read instructions I was given upon discharge:

Special Instructions for after surgery:

  • Do not bend over until cleared at next appointment.

(Wow! Amazingly this is a really hard one to remember. I had no idea we did so much bending over until I had to think about it. It is really easy to forget and I have to either have someone put on my shoes or develop new ways to do things so I am not constantly bending over. Maybe it is a good thing and I will develop better posture habits and ways to protect my back from injury.)

  • Do not scrub area of incision.

(This is kind of easy as it is swollen but I am told the incision looks really excellent. The incision is about 3 inches long in a cresent moon shape behind the ear with brown stitches that dissolve. I have not seen it but Harley took a picture with the camera phone while I was in the hospital. Today I accidentally dumped a whole handful of shampoo into my hand which I could not get back in the bottle. Thus I finally just whapped the whole handful on top of my scalp. I guess that is ok as my hair had not been truly washed for over a week - just rinsed with this leave in hospital stuff that makes your hair kind of gross but easy to comb out.)

  • No driving for at least 2 weeks of until MD says OK.

(I live rurally about 10 miles out of Redmond, WA so it has been IMMENSELY helpful to have my mom here for the week to take me where I need to go (grocery shopping, errand shopping for things we need, picking up my disabled placard tabs, the post office, and walking the dogs. In addition, the other vehicle needed to be taken to Seattle today which is a 2 person operation that I cannot do. Therefore, it was extremely helpful that my mom was able to drive the other vehicle for Harley to be able to do this. Tomorrow or Friday the dropped off vehicle needs to be picked back up which I absolutely could not do and we would need to make arrangements with someone to help. Thus it is even more appreciated that my mom is here to be able to assist us with this task.
As far as driving, the day I was released from the hospital I did not notice because I was comfortable and busy in the back seat of a different car. However, in the truck as a passenger in the front I feel rather uneasy. It is clear I would not be able to drive yet - park or move the truck yes but not drive. I do have quite a bit of weakness and I am still getting over episodes of double vision. My hands and head are a little shakey so I guess the doctors know best, eh? Afterall, there was a giant shift in my brainstem and 2 large tumors removed. It will take a little while to get readjusted.)

  • Showers only. Do not soak the incision.

(This is not hard either as it is setup for me to only take a sitting shower using my fantastic shower seat. I am really enjoying it! It is easier to shave the legs too! ;+) Egads I was a hairy bear before today!)

  • No lifting of anything over 10 lbs (yes that is correct only 10) for two weeks.

(On the other form it is written 6 weeks! Heavens I will become a weak Flabio by then! I sort of prepared for this too although I did not know I would be limited to only 10 lbs. That is not much at all and things - at least stuff I normally lugged around - was 10 pounds or more. Right now it is sort of ok but I know this is going to be a little challenging if not aware of it all the time. I will really have to hit the gym and get back into weight training once approved!)

I have to sleep at a 30 percent grade at least and cannot sleep flat on my back. Therefore, we stopped at Bed, Bath, and Beyond to get a special incline pillow for me to sleep on the daybed on the main floor. In addition to this special pillow I also use a large square pillow on top of that and sometimes another smaller one. It was weird sleeping like this at first in the hospital but I have adjusted now and have a comfy setup (watch now that I say that I will probably sleep horribly).

So these are my instructions.
Apparently I was not to use the stairs and may have needed a walker. Well the walker and a cane were not needed thus far since coming home and I am handling the stairs well. My computer setup with the ergonomic keyboard I like is upstairs in the loft as well as my office. I guess you cannot keep me away from it for long (hehe). At first I sat on my rear to go down the stairs but now I am confident going down standing up. Harley installed a nice handrail there too along the area which did not have one. This makes it much easier and I really like it so it is something we should have placed there anyhow. Now I will not be using my shoulders as prior for support on the 90 degree angle where the stairs change direction.