Thursday, December 27, 2007

The Special Christmas

Fifteen years ago I thought would be my last Christmas. At the young age of 21, just shortly after my birthday, I was told I had the C word - cancer. I think that is all I heard the doctor say and then I was pulled into a vision of my own funeral on a blustery grey fall day. The somber news made it a very difficult and heart renching day which I was totally unprepared for. Everything happened in a such fast whirlwind that I was hurled into the testing phase and then began chemotherapy treatment.

Somewhere along the line there was a misunderstanding or maybe the status of things changed. In December just before Christmas I went to my treatment appointment thinking I was getting close to having it be over with only to discover I was not even half way through. I was completely disheartened. On top of that it was the worst treatment cycle I had been through leaving my body and emotions totally sapped and beaten.

I must have went home with my mom after she came up to visit as I would have been too sick to make the 3 hour drive home myself. I opted to stay in Marquette, MI for treatments where I had been going to college, rented an apartment, and could be close to all my friends whereas my parents had moved down to Wisconsin the year prior.

When I came home that Christmas everyone seemed distracted, in a lackluster mood, and the tree had not been decorated yet. Despite feeling really sick, I was determined that if this was to be my last Christmas then it was to be a good Christmas. My mind was set to make the best of it no matter what. My sister helped with the spirit of things by trimming the tree with me. It is a special moment I will always remember.

As good fortune would have it, my sister moved out here in November of this year and we were able to partake in holiday events together here which we have not been able to do yet. Early in December my sister joined me in the search for that perfect tree and to lug it home. We have not hunted for a tree together since I lived at home and went on the annual tree hunt on our property in Upper Michigan with my dad and brother. At the time I must have been 16 0r 17 and she was just a little girl of 6 or 7. And it is the prettiest tree we have had. In fact it is Harley's favorite this year.

The trimming was a team effort but my sister really did most of the decorating by putting my gazillion ornaments on it. Harley did his part by putting it up the same day we brought it home and then later stringing the lights around it. I adorned it with the angel, ribbon, beads, poinsettas, bows, and the few ornaments I was indecisive of where to place. My sister on the other hand went to town hanging all of the memorable ornaments I have collected over the years from family, friends, and my own gathering.

So thanks Michelle! Harley and I really appreciate it and enjoy the tree! It was nice to spend time with you decorating it again and especially on this occasion.

The day after Christmas we had a nice dinner and celebration here at the cabin with Michelle and DJ. This year is an especially significant year for both DJ and I as this year is DJ's first Christmas as a cancer survivor and I not only my 15th year after cancer but also my first year as a brain surgery survivor.

I would also like to acknowledge my friends Patty and KC who are celebrating their first year as a cancer survivors too. To all of the cancer survivors... Congratulations! To all of the family and friends.... thank you for being there for us. For those who are currently fighting, hang in there and keep looking ahead. For those who are loved ones left behind... my thoughts and prayers are with you that you have the comfort and peace of mind that you will meet again one day. Until then, know that your loved ones who passed on appreciated you and want you to make the best of life while you are here.

Merry Christmas!

We hope you all had a nice holiday.
Visit the following link by clicking the lighthouse icon in the title post or by cutting and pasting the url into your browser to view pictures our Christmas at the cabin.

Saturday, December 08, 2007

A Disappointing Setback

Tuesday morning brought a scary and shocking surprise. I had just finished eating a late breakfast and was lying/sitting on the couch. In the mornings I have to take it easy and slow. It takes me a good half hour to an hour to adjust. At any rate, I saw Harley run downstairs and open the door to check on the dogs. That means they are barking at someone who is here usually. When he opened the door I saw the top of some delivery truck.

I rose from the couch to see what was happening. Then I started to get the blacking out episode again. In the past when this has occurred it was only momentary (a blacking out/narrowing of my vision accompanied by light headedness and in extreme rare cases weakness in my arms and legs). Generally I can just stop and stand there to let it surpass or grab on to something for support until is dissipates. However, this was not a minor one.

As you will recall I have been having them for about a month. At my October followup appointment I was showing some anemia from when I was in the hospital. We did the test again Friday December 2nd. While my hematocrit and hemoglobin have improved and are just a hair low (that is the oxygen carrying count in your red blood cells), my body is now really low on steroids and having problems producing its own. My doctor emailed me on Monday and wanted to put me back on the steroids.

So Monday came and I was not thrilled with that news. How many more times in my life do I have to take these steroids? Back in 2005 I had a hard time being well without them (took them on and off for a year). Yet over time steroids take a toll on your body and are not good for long term use. While I have not been sick like in 2005, I have hit a patch of being really tired, weak, and unmotivated. I was waiting for the slow FE (iron) to kick in and making a point to consume more iron rich sources seeing I am not a red meat eater. Avoiding the issue and needing time to think about it, I did not respond back or restart them on Monday as suggested. I wanted to put it off until Tuesday and inquire if there was some kind of natural way to get the steroid levels back on track.

So that is what I did and that brings us back to the original story I was telling you. I remember seeing orange, blue, and white on the top of the truck and then everything started to go black. I knew what was happening but I had nothing to grab on to as I was standing in the middle of the living room. It happened so fast. I could not stand there like before and wait for it to pass.

From my own created version of my memory I dropped to my knees as my legs and arms went numb. I could not respond but in my mind thought it felt nice being down there and just resting. When I came back to this plane of existence Harley was standing over me frantically shaking my shoulder trying to get me to respond. When I got up there were 3 large boxes that had been brought into the house which seemed to just magically appear as I have no recollection of them being carried in.

That was the scary part........realizing my perspective of what happened was not accurate and that I had no memory of seeing them being carried in even though I was right there. In fact, my thoughts on what happened were just that - my thoughts. Harley told me that I had fallen on to the floor, nearly hit my head on the stone coffee table, started convulsing, and then was totally non-responsive. That is kind of freaky and shocking. It made for an emotionally as well as physically exhausting day.

After the event, I got up, took my steroid, and laid back on the couch and slept for an hour or longer. I again took a nap later on that evening. I would have to say that particular day is the most emotional I have ever been while taking the steroids from what I can remember. Now I can somewhat understand what people with depression must go through.

It is all worked out and things are going pretty good. I had to lay off driving until we could assure it was not going to happen again. I did still do my walking with the dogs everyday. There is a neighborhood less than a mile from my house (Daniel's Ranch) where I was able to safely drive and walk around.

On the day it happened and I went for my walk, an ambulance and fire truck oddly (not at all a normal site out here) drove down the cul-de-sac where I was heading. There were no lights flashing on the vehicles and they were not in a rush. At first I had a sad thought that maybe they were too late and that is why they were not in a hurry. Yet, they did not stop at any of the houses. Instead, they turned around in the cul-de-sac and stopped and parked facing me along the wooded side of the neighborhood. Then I had an embarrassing thought. What if they were out checking on me? LOL We waved as I passed and then they went on their way. (Strange coincidence) I asked Harley if he called them but he knew nothing about it.

So my plans for the week to get on a more regular gym schedule fell through as I could not be doing a lot of driving around. Wednesday morning I had a very mild weakness/blacking episode when I got up from my computer chair to grab a book off the top shelf. Putting my arm above my head after just rising made them feel weak and numb again. It did not last long at all and I was able to rest against the bookcase. On Thursday I was feeling pretty good with no episodes throughout the day so I ventured out to the Carnation post office and took the dogs walking on the Snoqualmie Valley Trail. Yesterday I also felt well so I drove to Redmond (had to go to the post office again) and then we walked around Redmond Town Center where the twinkling Christmas lights lit our path as daylight vanished. Afterward, I stopped off at the gym for a 50 minute workout as I have not been there since Monday.

Today was another day I felt rather well and no weakness or blacking out episodes. Therefore, I ventured out a little further and drove to Issaquah where I stopped at my sister's, ran some errands, and enjoyed the sunset and Christmas lights on our walk in the Issaquah Highlands. I was planning to go to the gym in Redmond too but I did not make it back in time to have enough time to workout. The gym closes early on Saturday and 20 minutes allotted for a workout does not make it worth the 15 minute drive to get there.

So what's up with the steroids? Originally the plan was to take a dose of 2 mg for 3 days and then 1 mg for 3 weeks before a taper. Since the "incident", I am to take 2 mg a day until December 12th and then 1 mg for 3 weeks, and then we will try tapering. That is at least a month on them again. Unfortunately, there really is no other alternative to get me back on track. Maybe I will not have the unwanted side effects as I do not have enough of them and we are trying to just get back to what it normally should be instead of more than what it should be. I am hoping anyway.

For the time being, I have concluded that I should just take advantage of the situation and seek to make it work best for me. Generally speaking, steroids give you more energy and motivation. Hence, I should put that energy toward things I need to get done here and also to my return to working out now that I can lift freely again. I lost a great deal of strength and lifting the dang garage door feels like I am trying to pick up a 500 pound motorcycle!

About the eye appointment I was to have this week.....Unbelievably Interstate 5 from Seattle to Portland was closed! It was flooded! We had snow last weekend that melted by Sunday (about 6 inches - There was enough snow Saturday evening for Harley to make a giant snowman just on the deck!) Then it warmed into the 50s and we got hammered with pouring rain! On the way to Portland there is a river south of Olympia. From what I heard there is some dam that broke and the freeway was flooded and broken up. Of course it was not entirely impossible to get there but a VERY LONG detour to the Yakima in the center of the state and then down to Portland (hours out of the way). Thus, we had to cancel and come to find out we could not reschedule. On that particular day as fate would have it, the clinic learned that the doctor was being transferred to California with a couple weeks!This is very disappointing indeed as we really liked that doctor when we were in the hospital. My general internist knows him too as he did his residency there.

What is the big deal you may wonder? The doctor is a neuro-ophthalmalogist. So that means he is a very specialized doctor and there are few of them in the country. He is not just an eye doctor (optomitrist) but an ophthalmalogist who is board certified also in neurology. Therefore, he has an understanding of vision problems related to the central nervous system and brain tumors which is where I am one of the rare few that it applies. Now I do have one up here, but the doctor in Portland has experience with others who have what I have (NF2) which is also very specialized. I have rare things that have happened and are happening to my vision that I want answers on. Currently some of these issues are unexplored and I need someone who is interested and willing to work to solve them for us (those with NF2).

Saturday, December 01, 2007

Can You Hear The Crickets? - a short autobiography about me

The following is a short article I have written to submit to the ALDA Winter 2008 newsletter issue. It is a true story of when my hearing loss started. Submissions for the article are about how denial played a part in my hearing loss.

Can You Hear The Crickets?

By Rebecca Dufek

By the time my hearing loss became apparent I had been suffering early signs for months but passed them off as something else. I remember I was only 26 years old which is the age of my baby sister 10 years my junior. It was inconceivable to me at the time that someone so young could lose his/her hearing. After all, only the elderly succumb to hearing loss as some do failing eyesight as we age, right? Wrong! As I came to find over the next 2 years how mistaken I was.

It all began rather slowly where it was easy to attribute my hearing loss to another source. Reaching way back in my mind the first sign of my hearing starting to fade was while on the phone. I worked in a lab and sometimes I would talk to my husband from the lab’s cordless phone. Every so often I would misunderstand what he said and my reasoning would be a poor quality phone. We also owned a cordless phone which I had trouble hearing on prior to that experience. My thought was that the technology just was not perfected yet for cordless telecommunications devices and that is why I could not make out certain words here and there.

After that I have a vague memory of people telling me I had a hearing problem or was not understanding them. I cannot get into detail because that was part of the denial. The denial was so deep at that point that my specific recollection of those instances have been nearly erased. When denial happens one just wants to forget about it or hope that it goes away. I remember the few times when it was brought to my attention that I did not believe it. I probably though the person was nuts.

I grew up in the rural Midwest where there are summertime fireflies buzzing around and nighttime crickets chirping. The chirping was so loud that the sound could pierce right through my closed bedroom window. From listening to their high pitch music over all those years it was a normal expectation for me to hear which I did not give much thought to. Subconsciously my mind anticipated the loud hum of chirping crickets with my normal daily routine. Then one summer evening at our rental in West Seattle (the city) it became apparent to me that it was unlikely I was hearing crickets in the rain. I began to search around in the bedroom apartment leading out into the yard to see if a cricket had found its way inside to seek shelter from the soggy outside. None were to be found! It then dawned on me that I had never seen a cricket in Seattle since I had moved here a year prior. So what was the chirping sound that I was hearing all the time?

After that experience it was sort of forgotten again until one day I noticed a volume fluctuation while watching TV in the same apartment. I was lying on the couch with my right ear mashed into a pillow. Because I was having difficulty hearing the TV, I turned up the volume. I had to turn it pretty high and therefore concluded that the volume on the TV must be broken. Eventually I tired of the position and it was time to switch to the other side. When I did so, I noticed that the TV was now really loud. I was absolutely shocked! I now had confirmation that there was something wrong with the hearing in my left ear! How could this be? I was only in my 20s. I was still a spring chicken.

That was the year 1997. Even with the very obvious TV volume incident I still did nothing for a couple years. During those years I recall things that were easy for me to understand getting more difficult (people with foreign accents, soft spoken women, and phone conversations). At one point I was required to apply for my own job (which I did not get) when I worked as an office temp downtown. It was incredibly embarrassing as I was interviewed by 3 female directors who were all soft spoken it seemed. If one of them happened to be rustling with the paper the interview questions were on, I could not understand what was asked. I had to request them to repeat the question and then they all gave each other “the look”. You know what I am talking about. The look that says you are not on top of your game or playing with a full deck.

After that humbling experience I realized there was a problem and was slow to take action. First thing I needed to do was get insurance which I did at the end of that year. Then it took me another year to get a hearing test and yet another to get my one and only hearing aide in April 2000.

Basically my hearing loss was in both ears (left worse than right and the sound signal so distorted it could not be improved with a hearing aide). I came to learn that the hearing loss was due to tumors in my brain on both acoustic nerves which would continue to grow killing the nerves until I reached inevitable deafness. That was a rather large blow to accept. Not only did I have hearing loss at a very young age but I also had a bunch of tumors in my head to worry about.

Once I got over the 3 weeks of hating wearing a hearing aide and accepting that I needed it at that point to function with society, things moved rather rapidly. Yet I still went through another stage and phase of denial. Back then I could handle being hard of hearing but deaf I could not. If deafness was mentioned it was a sad time for me. I cried often and could not tolerate it if someone mentioned learning sign language. I was introduced to an ALDA group but I did not feel I needed it because I was not deaf. Further, how could those without tumors understand what I was going through?

It took a good year before I finally started to warm up to the idea of learning sign language. My husband convinced me that sign language would be a good skill to use so we could communicate under the water while scuba diving and we could also have our own “secret” language while in the midst of hearing people who do not know sign. Seeing I was young and still in career age, I found a counselor and decided to go back to school. In fall 2001, I took my first sign language class with my other classes at the community college. Interestingly, there was only one other hard of hearing lady in the class with me. All of the other students were hearing and this is how it has been for the 7 sign language courses I have taken over the years.

My choice of study this time around was teaching. I had planned to apply for graduate school at the University of Washington. One of the prerequisites for the program was to have volunteer teaching experience. While I was actively assisting with high school science programs, I also decided to explore working with kids who have hearing loss. I met a teacher who had a similar fate to mine and had made the transition from being an elementary teacher of hearing students to a kindergarten teacher using ASL with deaf students.

The teacher and her commitment were wonderful. However, it was too much for me to bear in that phase of my hearing loss. One young boy in particular had just lost his hearing and so frustrated with his grief of his former hearing self that he acted out. For him, communicating in sign language was so painful and the loss so new that he would not sit and learn. Several times the teacher’s assistant had to take him outside. I could feel his anguish and hurt like a piercing dagger to my heart as I could see aspects of myself in him and relate. It was hard to sit through the class as his emotions brought out mine and tore me up inside.

When I finally did go completely deaf (not profound with residual hearing), it was sort of uneventful as I had grieved about it for so long. It was kind of relieving that it was finally here and I could get on with the next phase of life. What was hard was dealing with the denial of other people grieving my hearing self and not accepting the now fully evolved deaf me. As I had to adapt when I was hard of hearing, I had to learn to become deaf with the new me. At one point my husband told me “Life is going to go on. It does not stop for you.” At first I was kind of mad but it was true. Time does not stop. Life does not stop. You can choose to accept it, deal with it, and forge ahead or you can sit on the sidelines while life passes you by. The point is that life is actually rather short. You have once chance in life to make it the best.

Wednesday, November 28, 2007

Happy Thanksgiving!

Katie and Jake bummed that there are no Thanksgiving drippings to fight over.

Our friends Karen and Sam visited for our first Thanksgiving breakfast.

This year we did something a little different which worked out marvelously. My original intent was to make a traditional thanksgiving dinner but that did not work out and it would have been too much work anyhow. My friend Karen suggested having a breakfast which was so much easier and really a pleasant way to start the day visiting with our friends.

We had pumpkin pancakes, chicken apple sausages, baked bartlet pears with apricots, raisens, and almonds, and hot spiced apple cider.

The night before I peeled all the pears to bake in the oven the next day, the sausages I just had to throw on the grilling machine, and the pancakes were easy to make. A half hour or less afterward my kitchen was clean and we were ready to head to Seattle.

I was actually feeling great that day and the weather was clear and sunny which was an added bonus.

This year we had decided to volunteer somewhere but we apparently did not plan far enough ahead. A week and a half before Thanksgiving I scoured the internet and local papers for an opportunity where we could contribute. Surprisingly, it was not as easy to find as I had anticipated. I assumed I would just open the paper to find an ad for volunteer opportunities for thanksgiving day or a master list on the web.

I did run across a Seattle Times article online that said you must reserve early for holiday volunteer activities as they fill up fast. With the article was a link to a few places needing volunteers. Not all of them happened on Thanksgiving and not all of them were close. I found one near us but when I got an email back to my inquiry they no longer needed help.

Another friend I asked had suggested the Union Gospel Mission in Seattle. When I checked out the website it mentioned they serve 3 meals a day 7 days a week. I thought they would surely need help and when I called I was pleased to learn from the intern on the line that they could use us.

So Harley and I were all excited. We were set to volunteer Thanksgiving afternoon at the women's and children's shelter. However, when we got there our names had not been added to the volunteer list! They did not need us. So we walked over the the men's shelter to see if we could chip in there.

When we arrived were many volunteers there also. We were given the task of waiting at the front door for any donations generous people dropped off. After sitting there for close to 2 hours there was only one group who dropped off things for us to help carry in. There was not any other tasks for us to do so we left and enjoyed that last bit of the nice day and setting sun over Elliot Bay.

It was interesting because after all this we had only eaten breakfast and a cheese stick. We did not stop at the open restaurants on the water front as we were in the mood to eat turkey instead of fish. We were sure there would be something open in Redmond so we waited to drive there even though we were famished.

Now here is a thing about gratitude and not fully being able to appreciate it until you are able to experience the other side. When we were down in Seattle we saw the homeless waiting to get out of the cold and enjoy a hot meal. They had no families and on Thanksgiving day they were waiting out on the street with their backpacks or bags of their only belongings. Some were young and some were old. One had to wonder about their lives and how they got there. One boy had to be 16 or 17, maybe even 15. He clearly was a run away. Wow! Can you imagine being a kid and not having a safe home and refuge to go?

So back to my story. I don't think there ever was a Thanksgiving day where I became that hungry. I always had things provided for me and I never witnessed what it was like for people who did not have that. I grew up in Upper Michigan so I never truly was exposed to homeless in the big city.

Like those waiting for a thanksgiving meal, we had to wait for whatever was available. When we got to Redmond (the closet town to our home) we were disappointed to find that none of the restaurants were open. We sure had our bellies set on the Claim Jumper which served turkey meals.

Of course by this time (6 pm or later at night) we were pretty hungry after only having breakfast and wanted something quick and convenient (although I have to say even though McDonald's was the only thing open we were not that desperately hungry). Fortunately Safeway was open where we were able to put together already prepared dishes and a hunk of precooked lunch meat turkey.

So even being hungry we were fortunate to have options: A)McDonald's B)An open grocery store and C) A warm and safe home stocked full of food we could prepare. We were able to afford food and had a shelter.

Experiencing it that way and seeing it that way, I would have to say it was one of the most meaningful thanksgiving's I have known.

Tuesday, November 20, 2007

Well This is Strange - Swollen Eyelids

Just when you think you are out of the woods you stumble upon a new forest. I awoke this morning looking like this and the swelling around my eyelids lasted all day. It has gone done a lot now but my upper eyelids are still slightly swollen. They were so swollen that I could feel the swelling.
Okay, what happened? Nobody knows. I woke up at 5:46 am needing to use the restroom (I went to bed at 2 am). An hour later I awoke to headache (bad dream again) and took two Excedrin. At 10:49 am I was surprised the wake up so late. I could not see too well out of my eyes but that is kind of normal as the gel drops I put in them at bedtime paste them shut.
I wandered into the bathroom to splash warm water on my eyes to unglue them and was surprised to look in the mirror to see the face in the picture above staring at me.
Ahh! What now? I brought the camera into Harley's office to have him snap these photos of me. Then I had a weakness episode where my legs quivered and body started to shake. My vision blacked out again like the head rushes I have been having. If Harley had not held onto me I might have fallen to the floor like I did in the episode in 2004.
Scary crap. I had to lie down right away and of course fear envaded my mind. I started to cry and get upset but then I had to remind myself that the strain of those activities would make the situation worse. So I chanted to myself the mantra from a motivational book I am currently reading, "Every day and in every way, I am getting better and better."
It is easy for fear to creep in and try to paralyze my mind. The last time the fainting/blacking out attack happened to me was when the tumor that was removed was swelling after the radiosurgery treatment in 2004. Thus I have fears of developing high intercranial pressure which leads to papilledema (swelling of my optic nerves). I have been on medicine for papilledema for over 2 years. Now I am off of it (3 weeks now) to see if removal of the tumor relieved the papilledema. Left untreated, papilledema will eventually result in blindness. So you can understand why I would get a little freaked out.
The 0ther time I had these weakness/fainting episodes is right before I was diagnosed with cancer. I had a blood cancer so I was very anemic which was causing the fatigue and fainting/weakness spells.
Boy, what a wonderful selection of things on my mind, eh? It truly is a struggle at times like these to keep thoughts positive and optimistic.
I emailed the doctors and one responded not knowing what is going on. He said the swelling could be related to an allergy or medicine I am taking.
a) I am no longer taking medication and have not been for 3 weeks. I did start taking an iron supplement (slow FE) 2 days ago and this morning I took Excedrin. However, both of those I have taken in the past and do not recall this happening.
b) I did not eat anything different or use any different kind of soap or bodyspray.
So who knows? Not knowing or having an answer is unsettling.
So what do I do? I start ruling things out.
At my first follow-up appointment my low blood counts alarmed me but I had just had a surgery so maybe that is kind of normal. I had a repeat done as in the back of my mind blood counts out of whack could mean something bigger is happening. The results of the second blood draw also showed low red blood cell count and hemoglobin (anemia) but I had some peace of mind seeing that my white blood counts were normal and not abnormally high. I don't feel like I did when I had cancer either except for lethargic and mildly weak from the anemia.
When I had the onset of papilledema I had other visual issues occur which have not been happening (light flashes and double vision). Realizing that has given me a little more sense of relief to keep me from total panic.
I did a quick search on swollen eyes and of course came up with papilledema and brain tumors (mine being one of the rare causes of this swelling). High intercranial pressure and others were also listed as causes. However, the tumor is out and swelling occurs immediately afterward and not delayed like in the case of radiosurgery (radiation).
I further searched on the same site under "swelling eyelids" which brought me to the heading "leg weakness and puffy eyes" which is what happened today. Under "weakness" I was brought to "anemia". So it appears that the head rush spells are related to my iron deficiency.
I still don't know why my eyes puffed up. They are a little sore. Maybe I have developed a new allergy to something.

Monday, November 19, 2007

Friday's Appointment

Friday we headed down to Portland for my second follow-up appointment at OHSU. Everything looked well .

Things I can do:

  • public pool - yes the incision is healed
  • running - yes, gradually
  • weight training - yes, gradual increase of weights
scuba - wait until looking at 3 month post-op MRI; I would like to return to diving in the spring.

standing on my head - yes, for 10 minutes a day.

LOL, sorry I had to throw a little humor in there! ;o) I am just joking about standing on my head of course. They do perform that in yoga but I don't do it as I would probably break my neck before passing out! LOL

Problems I have been having:

Hand writing is very difficult. Reason - The tumors were located in the area of the brain that controls fine motor skills. That area of the brain needed to be retracted (lifted up) to access them. As a result, there could be swelling of that part of the brain which causes weakness in certain muscle coordination. As the swelling decreases the coordination of my right (writing hand) will improve over time.

I have noticed a difference from first coming home. I could even sense it the first time I did dishes as scrubbing food off a pot/pan was not very efficientt. When I first came home it was also VERY difficult to document my progress. Writing was EXTREMELY slow! I was glad to have typing ability which surprisingly (and still is) better and faster than handwriting (I am a crappy typist: maybe 25 to 30 words per minute or less on an ergonomic keyboard). I do notice some improvement writing when doing upper arm weight lifting.

Blinking of the right eye is delayed and does not close fully (results in drying out and irritation of the eye); This should improve with time as the inflamation of the nerve decreases.

The tumor was also on the nerve that controls sensation so my taste should also improve over time.

Head rushes - should not be related to the surgery. I am still anemic. Now that I recall, I also experienced the head rush/vision blackening many years ago when I was anemic. I am not a steak eater so I really do not consume any red meat. I am a white meat kind of gal (poultry, seafood, and pork). Therefore, I am back on Slow FE (iron) which I took about a year ago when my hemoglobin and oxygen carrying blood counts were low.

I have really felt low on energy over the past week and working out is much harder than before. My muscles fatigue easily and I am physically tired also. I thought this was primarily from the steroids wearing off and not working out regularly for 2 months. I am relieved to have a better explanation then just thinking I was totally getting out of shape fast.

With my taste change I have stopped drinking V8 and eating bananas unfortunately which are very high in potassium. I have been having aching shin pain in my right leg at night which is probably related to my low potassium level and not the blood clot I had previously as that results in a different kind of pain. So I am taking the potassium supplements again which I stopped using when I went off the Diamox medication (Diamox depletes the body of potassium so I had to take supplements and eat high potassium foods to prevent lower leg muscle cramping).

Pain behind left eye and involuntary muscle spasm of the lower left eye lid - not sure what is going on there. The pain behind my left eye has seemed to go away within the past few days. We will make a note of these things to watch and take a look at the next MRI coming up.

It is possible to have another surgery right after a previous one if needed. However, my surgeon does not want to operate on that tumor at this time. It is smaller than the two I had removed. It is not big enough yet to warrant a surgery. These tumors are not removed unless they are producing problematic symptoms or growing to a large size.

Now that may seem a little confusing for some reading this as they have had tumors removed that were small or smaller. Remember I am completely deaf. Thus hearing preservation which some pursue when operating on smaller tumors is not an issue for me.

We will continue to monitor this tumor through MRIs like the others. My last MRI was in September (prior was April). The next one is in a few weeks. It is routine to do the MRI 3 months post surgery after the swelling has gone done. After that, as long as I am not having a problem, the MRI schedule will return to every 6 months again.

Other interesting tidbit -

Between my ear and the incision my scalp is numb. I can tap it and it does not feel like I am tapping my head. From making the incision some sensory nerves are cut and sacrificed. The feeling may come back or the lack of sensation may be permanent.

Things I was finally able to take care of that I could not or did not have time to do before the surgery -

Get a haircut/trim

Get my last dental cleaning for the year (when it was due I had the onset of trigeminal neuralgia)

Katie and Jake also got to have their bath today at Petco. :o) They were all excited to be clean and not stinky. Now they will go roll around in the dirt again! LOL ;o)

Friday, November 16, 2007

Update on Tastes

I am still eating the green tea wasabi peanuts. They have totally become my favorite thing now! I snack on them several times a day (just a few as I cannot swallow too many due to dry mouth; I have to drink water while eating them).

Sweet things are not sitting too well with me yet depending on what it is. Last Saturday we went out to dinner at Chili's with my sister and DJ and I ordered the Caribbean Grilled chicken salad which I did not find satisfying at all. It sounded good (topped with pineapple and mandarins with a lime vinegarette). That is the thing...sometimes food looks good from my memory of it but then the taste is another story.

I tried to eat the chicken off of it and the lettuce with no dressing. Yet the chicken was too dry for me to swallow. Later I switched with my sister as she had the asian lettuce wraps. LOL It was as if I went from eating pure sugar to pure salt! Thank goodness we had a bag of wasabi peanuts in the car for afterward!

I found a something which I totally enjoy and can eat! Apples are a no no for me with my facial paralysis. I have a hard time taking bites out of the apple and not chewing my lip. However, I find that I can still have apples by eating apple sauce or slices. Normally granny smith or green apples are too tart for my taste. Yet, I do enjoy them on salad sparingly and bought a bag of Chiquita green apple slices the other day. This evening I decided to try one and ended up eating nearly the whole bag they were so fantastic!

So that is my new thing - Green Apple Slices

The other night I had vegetarian pizza from Papa Murphies with tomato sauce that agreed with me. Dark chocolate fortunately is something else that I am still able to savor.

Thursday, November 15, 2007

Optic Nerves and Status of the Eyes

Photo to the right
Papilledema Secondary to Intracranial Tumor
Bilateral,fellow eye: the signs of disc swelling are less pronounced. Moderate blurring of the disc margin is associated with moderate hyperemia, venous dilation, and coarsening of the peripapillary nerve fiber layer. This case demonstrates asymmetric papilledema.
Stephen C. Pollock, M.D., Durham, NC, USA
Above: View of optic disc and nerve of my right eye
Below: View of optic disc and nerve of my left eye
I cannot fully explain this to you yet as I am still researching it myself to understand what I am looking at. I have yet to find a photo of a normal eye. I am finding lots of photos of glaucoma patients as it is a disorder where intraocular pressure is increased damaging the optic nerves. That is why I take the same medication as glaucoma patients (Diamox to reduce intraocular pressure).
The papilledema (optic nerve swelling) is still a mystery of NF2 which another person in the country and a patient from Australia and I are investigating. So far, we have found out that the tumors are releasing proteins into the cerebral spinal fluid and increasing the intercranial pressure. Two other patients with this problem have had lumbar punctures to try to alleviate the papilledema. I have not. I have been on Diamox for two years to reduce this swelling. From what I have been told, the tumor which was removed could have been pressing on the 4th ventricle of the brainstem creating blockage of the cerebral spinal fluid and thus increasing the pressure. Now that the tumor which was the source of compression is removed, I am trying a trial off of the medication to see if the papilledema returns.
SIGH......... It is frustrating to not have answers and to have my eyesight hanging in the balance. Not cool seeing as my sight is CRUCIAL to my functioning. These complications with vision were totally not anticipated at all seeing as I do not have optic tumors. Hence, I never bothered to research it over all these years and my field of study is not in ophthalmalogy or even human anatomy on this scale.
As part of having NF2, research to understand my disorder and make treatment decisions have become a big priority of my life. Fortunately, I have the science background to grasp all of this and the study aptitude. I also have the experience of going through a serious medical situation at a young age (cancer at 21 while I was a college student) and realize the importance of keeping track and being responsible for my own health care.
I have been thinking over the past year of obtaining a detailed and thorough anatomy book of the brain. My current library has only basic biology books as my area of study was not human anatomy (instead zoology, marine biology, and geology). Also this evening, I was thinking it would be good to add a book about eyes to the collection. All this knowledge is important to my understanding of what is happening to me and what course of action to take. As the saying goes "Give a man a fish, he eats for a day. Teach a man to fish, he eats for life."
Status on the eyes so far-
Tuesday November 6th was my last ophthmalogy appointment. Apparently I was supposed to have it next week but the schedulers made it for last week intead of next week. The idea was to have a checkup after I have been off the medication 3 weeks. Instead it was 1 week off of the medication so really we do not have a clear picture if the papilledema is resolved. (I did not know this until we showed up.) The photos above were taken last week. The doctor said my optic nerves are stable but are showing scarring from the papilledema. Yet when the photographer took the photos he said it is showing optic nerve swelling. So who knows until I see a different ophthmalogist down in Portland next month.
It was still good I had the appointment as I was having extreme irritation in my right eye. It was like having an annoying hair or object in my eye or having pink eye. It was hard not to rub when it itched and burned and was blurry. It was really bothersome as it would all of a sudden flare up when I was driving. I could not close the eye for relief as I cannot keep the opposite eye open. Thus I had to blink super fast to keep from driving off the road blind and hope for the best that it would go away. Obviously that is a huge problem.
At the appointment I was told not to rub the eye. Well what the H do you do? Isn't it natural instinct to rub your eye if your vision is blurry and irritated like there is a particle in it? Do you just sit there and let the irritation eat at you and not be able to see? HELLO?
After insisting that it be checked out and pushing for a way to get relief as opposed to just "Don't rub the eye.", I got the answer that my eye is drying out and there is a slight dryness of the cornea that needs to heal. I am not blinking the eye consistenly with the other one and closing it fully due to the facial paralysis on the right. My current drops (Refresh artificial tears) were not enough lubrication for the eye. I needed something thicker in consistency but the gel drops which I use at night are too viscous that they distort my vision (like looking through water). When we saw the photo guy we got some samples of Refresh Celluvisc and Optive. I asked for a contact lens patch from the photo guy and finally the doctor provided the reason why not to rub my eye and why I could not have the patch. First, the contact lens patch can trap bacteria underneath the lens and prevent the epitheal cells from healing. Constant rubbing of the eye further aggravates cornea (such as scratching a cut).
The Optive drops have been very successful and I have not had the terrible irritation. I am not experiencing double vision or light flashes but I am having momentary blacking one would experience when having a head rush. This seems to happen when I wake up, when I stand from a sitting or resting position, and when bending over. I had an occurance today while walking when I stopped to tie my shoe. For seconds everything goes black like night and then it clears and I can see normally again.
Other issues to note:
Pain behind my left eye and involuntary facial spasms of the lower left eye lid (the side where I have the other tumor still)

Monday, November 12, 2007

Redmond Ridge Trail

Kari's Bog

Photos from fall 2006 at Kari's Bog on Redmond Ridge Trail.
This evening we took a stroll on Redmond Ridge which we have not visited since prior to surgery. I like this trail as it goes into the woods along the Trilogy golf course and feels like an enchanting forest with its tall hemlocks, mossy covered trees and stumps, and bushy ferns everywhere. (Lord of the Rings ambienence)
It is tradition to often stop and see Kari's Bog. Karen Ingrid Osterhaug was born the same year I was but passed away in 2003. As it says on the dedication stone above, she was an evironmental scientist instrumental in creating the bog. Knowing that moves me and makes it a more special place - that someone committed their life to creating a refuge to share and pass on to humanity. The fact that we were the same age and shared similiar interests also make me feel more connected to this place.
Every time I see the bog it reminds me of times I enjoyed in the outdoors of upper Michigan and playing in the wetlands (swamps). When I look across the bog I half consciously expect to see or envision a moose as I had witnessed in the UP (upper penninsula of Michigan).
There is a quiet peace and contemplation at the bog. It is a place where I can stop, peer into the grandeur of the sky and reflect upon my life. Like entering a church, it is a place where I can stop, pay tribute, ask God for strength, and to be thankful for what I have.
As I looked across the bog this evening the magnitute of everything started to hit me. If I had known 10 or 20 years ago that I was going to have a brain surgery, it would have been hard to comprehend. For those of us with NF2 it becomes a normal part of life (almost a rite of passage). But outside of life with NF2, the idea is hard to grasp.
For a moment I put myself back in the frame of thought outside of NF2. I felt amazed and overcome to have made it through and be standing there alive as I had prior to the surgery. I made it! I had these aliens cut out of my head and I lived! A tear of sheer happiness and appreciation for life welled up in my eye. I thanked God for carrying me through it and I thanked Kari for providing me the place to come to during my journey.
Then I came back to my NF2 life. I wondered how many more surgeries I would endure and how many more I would live through. If I can make it through one I can make it through another. I prayed to God and to Kari to give me the strength and the courage for what lie ahead.

Training has begun

Photos by Laura Cunningham at the top of the Columbia Tower in Seattle (Big Climb for Leukemia 2006 participant)
Training has commenced.
On September 30th after I returned home from the surgery I made the goal that I was going to climb the Columbia Tower in Seattle again this coming March. A "Save the Date" postcard came in the mail while I was in the hospital. Harley picked up our mail the day after we came home and Sunday when thumbing through it, finding the post card became the inspiration of a recovery goal for me to work toward. I posted it up on my computer armoire where I see it every morning.
While in the hospital, stairs were rather terrifying. I believe I finally attempted them under guidance of the physical therapists on the 3rd or 4th day. Going up was not too bad but going down was REALLY scary as I had double vision and was weak. I joked with the therapists on whether I could climb the tower again.
When I came home stairs were not an option as there are stairs needed to climb to get into the house. Then eventually I had to brave the stairs inside the house to get up to my computer and bedroom and then down to the garage and spare room full of excess stuff.
It does not take long to climb the tower. Last March I climbed it somewhere between 15-16 minutes. What it does take though is cardiovascular endurance and leg strength. My leg endurance had becomed conditioned from training to walk the Seattle marathon last November. In January I started a different kind of training by working on my cardiovascular endurance by running and using the Cybex machine. I had not quite gotten used to using the revolving stair master machine.
So far since the surgery I have been to the gym 4 or 5 times. Within the last week I have been there twice and used the revolving stair machine. I found I have to hang on so I don't fall off (It embarassingly happened to me a couple times before surgery.) The first time I was able to climb 69 floors in just over 18 minutes. Yesterday (Sunday) I c0mpleted the 69 floors in 16 minutes and 27 seconds. I have only gone for 20 minutes. It is quite a workout and I am pretty exhausted afterward (huffing and puffing with profuse sweating).
Today I took a break from the gym as I was a little sore in the upper body (I did a chest routine and leg routine on the weights yesterday too). I find that for now, I am only going to the gym once a week. This week I will try for 2 times maybe 3 if it is going really good. Prior to surgery I was able to go about 4-5 days a week and also do my walk or a run for the day.
I also have added my hill routine (Daniel's Ranch neighborhood). I walk up and down the hill twice during the hour jaunt. One day I skipped the cul de sacs of the route and hammered out 3 traverses of the hill. I do the walk there once a week.
Oh, exciting news. On the way down the hill last week I found it easier to jog than to walk. It is the first time I have been able to jog since before the surgery. This friday I go to my second followup visit in Portland. I will ask if it is okay for me to start running now.
My fundraising page is soon to come! Information about the Big Climb can be found at this link:
To see photos of the tower and to learn the details about it, click the lighthouse icon in the post title for the link and to be directed to that page.

Tuesday, November 06, 2007

More of my Little Halloween Cuties

Pictures taken October 31, 2007 our walk in Issaquah, WA. Katie is pictured on the left and Jake on the right.

Happy Belated Halloween and Fall!


Me, my sister Michelle,
our sister-in-law Denise

Pictures were taken at my birthday celebration on September 22nd (2 days before the surgery). hehe I could not find where in the computer these photos were saved until now....hence the delayed posting. :o)

Monday, November 05, 2007

The Incision

Stock photo of a brain. The grayish brown portion is the cerebellum. The brainstem is the small portion you see sticking out underneath the cerebellum. The large tumor (vestibular schwannoma) was compressing the brainstem (lodged between the brainstem and cerebullum) while the other tumor (meningioma) was abutted up against the larger one.
Relative size of the tumors: vestibular schwannoma - 3.4 cm
meningioma - 2.5 or 2.8 cm

Photo taken October 4th, 2007 (first week home after surgery). Click the lighthouse link in the post title above to see a diagram of this surgical procedure: Subocciptial Craniectomy via Retrosigmoid Approach Here is a picture of the incision so you can see how large of an area they had to drill in order to reach the tumors. The incision is in the shape of a C behind my ear. From what Harley told me, it had to be this large so they could lift my cerebellum (the back part of the brain) in order to access the 2 tumors near my brainstem.

Originally my mom told me the stitches were brown. I later came to learn that the dried blood on my scalp made them appear that way when in fact they were translucent white like fishing line. Two and a half weeks after surgery Harley had picked a couple of these pieces off that were sticking out of my head. The stitches are dissolvable so they sloughed right off.

The surgeon's report of the procedure is absolutely amazing! It is very technical however, so I will provide a description in layman's terms.
First I was placed in a position known as "prone" which is face down like getting a massage. For this procedure I was arranged at "three quarters prone" (which means I was partially upward and not lying completely flat on my stomach). After removing the bone and lifting the cerebellum, a microscope was inserted underneath that identified the first tumor which was gray in color. Biopsies confirmed it to be a meningioma. An instrument called a Cavitron was used to debulk and remove this tumor. Then a yellowish tumor next to it was identified as the vestibular schwannoma. The surgeon carefully dissected this tumor on its edges and identified the 9th, 10th, and 11th cranial nerves. Then he continued to dissect it by debulking it from the center and carefully dissecting it from the cerebella portion of the brain and brainstem. Also, the compression of the tumor on the trigeminal nerve had caused my symptoms of trigeminal neuralgia prior to the surgery. Thus, this area was also dissected and decompressed (pressure relieved through removal). The part of the tumor which had grown into the IAC: inter auditory canal was also removed.

Facial nerve electrodes had been placed on my face to stimulate and monitor the facial nerve. Seeing as I had experienced facial weakness from the previous radiosurgery to this tumor, the small portion of tumor around the facial nerve was left to prevent further damage.

Closing me up
The mastoid air cells were waxed, and titanium mesh and Norian bone cement used to seal the opening. Once the cement hardened, the temporalis muscle and scalp were put back in place and the incision sewn shut.

It is pretty healed by now. I have been wearing a baseball hat without a problem for a few weeks now while taking my walks. It has been itchy and I have tried not to scratch in but I think I might have in my sleep. I am pretty certain it is all healed and that next week maybe I can get a long over due haircut (trim) and hopefully dye it sometime soon. In another week I believe I will be able to return to water aerobics, go in the hot tub, and take a bath. The concern prior of doing those activities was exposure to infection.

An interesting thing to note -
The area between my ear and the incision is numb but the incision area itself is sensitive to touch.
On the area of my neck extending below my ear, I feel some bumps. This would be scar tissue that I am wondering if it will go away in time. It is a little irritating as at first touch I forget what it is and want to itch it off like some kind of bug bite or zit.

The Wellness Table - Thank You :o)

Above is what I call my "Wellness Table". In the kitchen we moved the table all the way against the wall and set a nice cheery cloth on it with dried hydrageas from our yard. The vase the hydrageas are in is a very special gift from my sister with the saying "Beauty Can Be Found in Diversity" by the poet Maya Angelo. The idea was to have things clean and positive for when I returned. Upon return home, we setup all the cards and flowers on this table which greeted me each morning with a reminder of your support and good vibes for recovery.
While in the hospital and after, I recieved many nice surprises of flowers, balloons and cards. I would like to extend a special thank you to those of you who were so thoughtful to send them! Your kindness means the world to me and your sentiments have been incredibly uplifting! As a patient I have come to realize just how important this kind of support is in keeping a positive outlook on recovery. I was very elated each time I opened a card and a special delivery was made!
The flowers really brightened my hospital room and were a joy to see each day. One bouquet had very aromatic roses that permeated the room and reminded me of my lovely visit to the Portland rose garden the day before surgery. Again, thank you so much! The balloons in my room brought extra cheer to being there and the yellow happy face balloons gave me a sunny outlook.
I am the sentimental type. I have taken photos of all the flowers which I plan to put in a scrapbook with all the cards. The book will be titled the "NF2 Odyssey" after my blog and journey through Neurofibromatosis.
Now I just have to find some creative artsy scrapbook people to help me make it. Any takers? ;o)
Also, a special thanks I would also like to extend to friends and family that helped us clean, get ready and also brought over food before and after surgery. We truly appreciate your generosity! :o)

Strange Tastes

My taste has changed greatly from the steroids making it so I cannot eat many things and Italian tomato sauce dishes contribute to the bad taste and nausea. I have not eaten Italian cuisine in weeks. Oddly enough, although some dishes are too spicy, I find myself able to eat things like wasabi on imitation california rolls, wasabi peanuts, and artichoke jalapeno dip or jalapeno hummus.

At the worst phase (2 weeks ago), my mouth tasted like I had been sucking on a burned metal pipe. I found myself tasting many things to get the flat icky metallic flavor out of my mouth! Many foods had a bad after taste that made the problem worse.

Since being nauseated lately, I find it difficult to find meals to eat which I would enjoy. There will be food in the fridge that I just do not feel like eating and thus I have to force myself to eat something. It is an oddity. I get more nauseous with an empty stomach. Therefore, I have to eat regularly.

Aside from my new love of wasabi peanuts, I find great comfort in Dreyer's brand Orange Cream Sherbert. I eat it everyday and if I had no sense I would eat it for every meal! It has the effect on me like a security blanket. When I was in the hospital orange sherbet was the first thing I was able to keep down. The cool smooth texture and mild taste of the ice cream was so relieving and still is! When nauseous it feels better to eat cold things rather than hot.

Comfort foods I find that I can eat:
  • cold pumpkin pie
  • cottage cheese
  • strawberry kiwi jello
  • roast chicken with gravy
  • roast turkey with gravy
  • roast pork with gravy
  • mashed potatoes
  • canned green beans
  • soups such as clam chowder or beef vegetable

Seas still a little rocky but calming

The weekend was tough but yesterday evening I started to feel better where I actually accomplished a few things. This morning (just after 8 am) I was nauseated again which interestingly I am getting relief by eating green tea wasabi peanuts which is a new snack at Costco. After eating a couple wasabi peanuts which have become my morning breakfast routine, I ate a cup of cottage cheese and went back to bed with a cold cloth on my swollen eyes.

A few hours later I was dreaming of being in a doctor's office to investigate my current symptoms. I awoke to another frontal headache which was not as severe as the others and was remedied with acetmetiphin.

I am doing well enough today that I am planning on driving to the trail in Carnation and taking a walk with the dogs. They are pretty bummed out that we did not go all weekend and have been moping around. (If you know me well, you know that I really must have not been feeling good at all to have not even went outside let alone for a walk.)

I am looking forward to gaining my strength and for recovery to be on the upswing from here on out! It is time to get back my life.

Friday, November 02, 2007

Rough Seas

This week is not going so well. Today I am just wishing I could vomit and get it over with as I have been going through a few days of increasing nausea as if sea sick or car sick. I despise this feeling so much that it has the effect on me like the cringing reflex one may experience when hearing scratching nails on a chalkboard.

The mornings have not been a pleasant awakening. My dreams have responded to my bodily reactions. Wednesday morning I had a combination of bad dreams. First I dreamt that I took an advanced science class that inv0lved complicated calculations. I was completely lost and nothing that was discussed could be found in the book. The contents of the book were as obscure to me as if I were looking at a book written in a foreign language that I did not know. What was worse is that I had an hour or two to study (cram) for the final exam when I didn't know a darn thing. I felt utterly hopeless and panicked. In the dream I knew there was not even a chance to attain one point out of hundred. In my dream the pain in my head intensified with my stress.

Then to top it off, the dream shifted to being thrown out of a helicopter into the icy English Channel. The water was rough and pieces of ice were floating around. I had a life preserver but the people who pushed me out and jumped with me wanted to take it off. I pleaded that in the rough deep water if I went under or closed my eyes, I would not be able to swim and drown.

At that point I awoke to a screaming headache and chills even though I had a down comforter on me. It was a catch 22. Even though I felt really lousy, continuing to lie down was exacerbating my headache.

So it has been like this for the past few days: constant headaches and constant nausea with episodes of the chills. Yesterday I noticed my eyes swelled up and my face sort of puffy. This morning is even more extreme. Both mornings I have rested with a cold rag on them which does not seem to be reducing the swelling around my eyes.

Today is rainy and cloudy. I may take a break today from walking. I really did not feel like it but I did force myself to get out and do it the rest of the week. Tuesday I just could n0t say no to the dogs. They peaked in the window when it was time to let me know they were ready. Of course my heart when soft and I was like "OK. Let me go get ready." Yesterday Harley took us to the dog park and Jake was so excited he started to jump in circles on the deck while I got ready. Then Katie actually ran up the ramp into the truck which she does not do. They thought I was not going to take them because they knew I was not feeling well.

I am kicking myself as the last few days have been really nice and I have been inside all day sick. I accomplished absolutely nothing yesterday and the house is turning into a cyclone. I am trying to motivate myself to do some cleaning and putting things away today (I am still working on that).

As far as the walks, the fresh cool air feels a little better and walking it out is part of the healing process. I was slower yesterday (worst I have felt since in the hospital...I have no idea how I got through that) but managed to walk twice around Marymoor dog park.

Yes. I am missing things today.

  • My friend Skip's fundraising breakfast for the Team in Training with the Leukemia and Lymphoma society

  • Our monthly ALDA meeting

  • The Leukemia and Lymphoma Pineapple Classic

That is kind of bite. It is not like I had nothing to do today or no options. I just hope this does not last long so that I am not out of commission the rest of the month.

Next weekend is the Turkey Trot (a fun run that I will not be ready for yet) and the Wild Turkey Scavenger Hunt (which I do want to do) which are fundraiser events for the local school district's Health and Wellness program.

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.