Thursday, January 31, 2008

Sunny Day on the Snoqualmie Valley Trail

Pond north of Carnation along HWY 203 and the Snoqualmie
Valley trail.

View of the Cascade south of the Stillwater area along the Snoqualmie Valley Trail

I took these photos on January 23rd during the nice week we had here. The c0mplete set I took from the Snoqualmie Trail in Carnation can be viewed by clicking on the lighthouse icon in the post title. I made nice captions explaining everything this morning but unfortunately all my work was futile as I did something which erased everything....COMPLETELY FRUSTRATING!
Anyhow, I am having a difficult learning moment. I cannot even figure out why my text in this post is pulling to the right and not on an even margin so sorry if this is awkward to read. I am unsure how to fix it. It is really annoying to the point I think I might have to walk away from the computer for awhile to do something else.

Tuesday, January 22, 2008

Welcome Back John Hancock!

Well my signature is not as pretty as that of the legendary John Hancock's on the Declaration of Independence but at least I have the ability to handwrite fluently and legibly now. I am right handed and the surgery was for the tumors on the right side of my head. As a result the muscles going down my arm and shoulder and nerves had been weakened. After the surgery it was so incredibly difficult to to write! I just absolutely loathed having to sign my name after a credit card transaction. Fortunately I have a card with my picture ID on it as there is no way my signature appeared anything resembling how it had looked on the card.

Aside from my daily documentation of meds taken and progress for the day for the first weeks after coming home, I did not write anything. I really had to force the pen to paper and it was as equally frustrating as it was exhausting. When I look back at my notes it really does appear as chicken scratch from a very arthritic person. It is amazing I was able to make it legible at all!

What I found is that it takes time and work in strengthening the muscles. One month after surgery I started going back to the gym and doing some light weight lifting. I brought a binder to track my progress in. After doing some weight work on my arms I found writing easier than before I lifted anything. I also did some exercises for my hand and wrist.

Since getting approval to use the weights freely and increase the amount, I have noticed significant improvements. As mentioned earlier in the blog, I have had to be on steroids again as of early December. Thus I have taken advantage of this opportunity to lift hard. (still relatively light for some people; I am not a she hulk person)

There is a slight involuntary quiver in my right shoulder at times in the evening while resting. However, 3 and a half months post surgery I have found my handwriting to return!

I really avoided writing and did not want to so for quite some time. Oddly my typing was not affected on the ergonomic keyboard aside from the days when my fingers felt kinked and hit weird buttons that erased all of what I had just typed. I was able to type out the yearly newsletter but needed to sign our names on the Christmas cards which I totally did not look forward to. Slowly I managed the signatures for the cards we send to people far away and offline and then I made ecards to send via email to those here and online.

After Christmas I wanted to get notes out and I also had thank you notes to write from people who sent flowers and helped out before and after surgery. So if some of you are surprised to get a card from me this month that is why. I just sat down one day a week or so ago and could write! It was so exciting that I wrote them all out in a couple days! The task was no longer daunting!

Also, Thursday was my first appointment at the Casey Eye Center at OHSU in Portland. Because it was a first visit, I was required to fill out the medical history questionaire and form. They had mailed it to me but I forgot to grab it off the table before we left the house. Therefore, we arrived without it and I needed to fill it out there. Prior, the situation I would have as been as enthused to do as I would be about doing wash (I hate doing laundry) but surprisingly my hand just took off completing it in record speed (we were late). Granted it was not the neatest job but the fact that I was able to fill it out so quickly and that it was readable on top of that provided me a secret sense of pride.

Sunday, January 20, 2008

Happy 33rd Birthday Harley!

Harley with his favorite black forest cake. We only had one candle with the number 3 so the other half of the number 33 is composed of 3 candles. Taken January 19th, 2008

Yesterday was Harley's birthday (my number 1 supporter). Often when one has an illness or conditon he/she gets all the attention but really it is the loved ones who endure a good amount of the grief, work, and worry. Like a secretary to the president, Harley takes care of many of the things behind the scenes to get us through. Not only did he need to learn another language (sign language) to communicate with me, but he has also spent countless hours on the phone coordinating my medical care while I have been unable to, making followup appointments which are difficult for me to plan over a relay system, handling all insurance and billing issues, implementing changes within our home to accommodate the obstacles I encounter and to provide more organization, driving me to appointments here and out of state, and providing the tools and resources I need to adapt and pursue my interests. All at the same time he acts as an emotional shoulder during the ups and downs while taking care of his own needs and career.

It is a huge job that many people would not be up to task to take on. In fact, there are some people who would see it as too much of a load and burden which would be easier to walk away from.

I am extremely lucky. I often think of what life would have been like without him. It is a scary thought. I basically would not be the person I am or where I am today. It would be very hard to do all these things alone and I honestly cannot imagine anyone who could have been more perfectly suited.

So thank you Harley for all your love, encouragement, acceptance, and support. You are very much appreciated and I often thank God for having been so fortunate to have you in my life! I hope you had a wonderful birthday and have many more. You deserve it!

Tuesday, January 15, 2008

Taking a Hopefully Short Break

Alas at the time of my last post I was right. I was unsuccessful at warding off the bug of the season. Thursday morning I awoke with the full on chest cold and had to cancel my walk with my sister. I took the day off from the gym too and did not go anywhere.

Since then I have been improving but there is still a wheeze in my chest. I have been downing vitamin C, a multivitamin, echinanacea (both the tea and the supplement), Immune Fizz drink, cough syrup, and eating oranges daily combined with theraflu cold for the first four days. I have to boost my immune system as much as possible to fight off any infections as I will be on steroids for 2 more months which weaken my immunity.

So far my precaution and efforts have paid off and I have been able to return to walks with the dogs and the gym. Friday we went to the dog park, Saturday I went to the dog park and gym, and then Sunday was a beautiful day where I felt up for taking a hike with our dogs and my sister on Squak Mountain. Yesterday it rained all day and then snowed so it was another day off from walking and the gym.

Coupled with the wheeze in my chest and snow on the ground (too slippery for my footing), I will have to hold off on running for a bit and restart my training when my lungs are clear.

I also missed the body vive class the day I was sick and then this Thursday we will be going to Portland for my eye appointment. Therefore, I will not be able to try it out until next week.

The snow is still on the ground but it is an absolutely beautiful day where I just cannot let it slip by without a walk. Even the wheeze can't keep me inside for long. ;o)

Wednesday, January 09, 2008

Splish Splash

Today is the first day I have returned to the pool and water aerobics class in at least 4 months. It had been so long that I forgot my water shoes and the balls of my feet ached everytime my foot impacted the pool bottom.

Overall it went well. Part of the reason for such a long absence is not because I did not have doctor approval. In fact I was given the permission after my first month follow-up. With the weakness in closing my right eye and the burning/scratching irritation I was having, I thought being in the pool would aggravate it more. Further (LOL), I have not been behaving well since surgery and have been on a eat anything that tastes good food fest which included pies, cookies, chocolate truffles, rum cake, etc.. Thus I gained that weight I lost from not being able to eat in the hospital and then some. I am a few pounds more than I was when I went in. My hope was to get a new swimsuit but in the winter season I have been finding the selection rather slim.

I have not found a good suit yet. Where are they when you want one? But today I decided time is flying by and I can no longer use that as an excuse. Therefore I put my old one piece suit on that is slightly falling apart at the side. The class is not a Miami Beach bikini contest so nobody would probably notice anyway.

As I had mentioned earlier in my post about running, my legs have really gained strength and stability. Starting off today seemed just right as I didn't experience any muscle weakness or quivering in my legs (aside from my sore feet because I forgot my shoes). My balance seemed improved too when we did the stretching exercises at the end. I was able manage standing on one foot while moving my arms around in the water.

One difference I noticed however is that water leaked through my nose into my airway. In the right nostril it is weakened and I do not have the ability to fully seal it off at times. I did not notice this in my pool sessions prior to surgery so I am not sure what I can do or if I can do anything to improve it. It was not a huge problem but it does make me wonder if this would occur when I return to lap swimming.

The other issue of course was the eyes. I definitely had some eye movement problems going on where my vision was "shaken up" and it was hard to see what the instructor was doing at times. I do not really know how to describe it except for that maybe it is like if you tried to focus and see something after spinning wildly around in circles.

Even with the weight I have gained I am not an easy floater still and on certain exercises I slowly sink under. Hopefully that means that I have gained muscle mass more than my lack of technique and skills.

I did get a little nauseous afterward and had a weird headache. However, Harley has been ill and I think my immune system finally gave in to his bug this morning as I was not feeling too great when I woke up. I did not feel really well in the afternoon either (fell asleep in my truck when I got home from taking the dogs for a walk) but I am feeling ok right now.

I am going to try another new class (Body Vive) at the gym that focuses on strength, balance, and body core. With that, the running, the weight lifting, the stair master training, and walking the dogs, I will probably just fit in one water aerobic class a week. It did feel nice to be back in the water though. I am hoping to continue improving my leg strength and balance with the water aerobics, Body Vive class, and BOSU practice so that I will be able to handle wearing dive equipment again.

Let there be light

Early Monday evening we went for another run. I am thrilled that it is starting to get lighter out. We went to our regular trail out in Carnation that we have not been walking on for the past couple months due to how early it gets dark out. We started our jaunt after 4:30 pm and I still managed to see the trail after 5 pm!

In the spring, summer, and early fall we are on the Snoqualmie Valley trail frequently. However, it is an old railroad grade trail in the rural country side which is not lighted by street lamps. As a result, we eventually had to abandon it as it was getting dark at 4:30 pm. I have a habit of going walking in the evenings which works out really well when it is light out. The light disappeared very quickly while I was in the h0spital and when I came home I was stunned and unready for it to get dark out so soon.

No matter! I found a way to adapt. I started going earlier and then walking in areas and neighborhoods which are lighted or have street lamps.

For the average person this would not be so big a deal. However, for me and many of my NF2 counterparts the approaching darkness is a HUGE obstacle! Commonly and very often these tumors disrupt the vestibular system as the nerve that controls balance extends out from the nerve that controls hearing (8th cranial nerve also known as the acoustic nerve) where the main tumors typically reside. Therefore, we often use our eyes and vision to guide our balance function in something as simple as walking as our natural vestibular (balance) system is not working. So when it gets dark out we may have no sense of balance and stumble around like drunks.

Immediately after coming home from surgery I was not quite ready for low light situations and had to work my way back up again. I had taken my dogs and mother for a walk in one of the neighborhoods near my house. We started the walk as night was falling so I brought my headlamp and hiking poles for stability.

Things went well at the beginning when it was not completely dark out. Soon however it began to rain hard and the way down the hill was dark as the street lamp was not working. The falling drops capturing the light of my head lamp danced all over the place disorienting me. Even though it was a couple blocks, the darkness made it extremely difficult for me to be certain of my footing and I slowly and unsteadily moved one foot in front of the other like a person in physical therapy learning to walk.

Fortunately, I quickly moved past all that and learned how to handle walking down a hill again and adapted to low light situations. I don't believe I have used my hiking poles since that day but I have been regularily walking in the same neighborhood and others going up and down hills.

This holiday season has been particularly pleasant for me as I have found all these neighborhoods decorated with lovely and tasteful christmas light displays. The lights create more illumination to guide my balance. I can begin a walk at dusk and as the sun goes down the show begins. On a cold dreary and often wet NW winter day, it warms the soul to take a stroll among the colors and twinkles.

To all those in the following neighborhoods, I greatly appreciate your spirit and the work you have put into creating a cheerful and inviting atmosphere: Daniel's Ranch, Quail Creek, Issaquah Highlands, Redmond Town Center, and Redmond Ridge.

Sunday, January 06, 2008

Back to Reality

Friday was my 3 month post-operative appointment in Portland. This time I did not have the long exhaustive list of questions I typed up and I did not do any prep work the day prior. Aside from my insurance card, I made certain to bring the copy of my MRI scan taken on December 21st to the appointment.

I am not sure what I really expected. I guess I just wanted an answer for why I am having intermittent double vision and an impression of my MRI that Harley and I had already looked at.

3 months post surgery, the start of a new year, and I am ready to be done with this. That is the difficult thing with are never done with it. Again and again that is hard to accept at times. I was one of the "lucky" ones when I had cancer and it was "done" with. The tumors were gone and I was able to move on and return to life as I knew it before.

With NF2 that is never the case and even more so for someone like me who harbors MANY tumors. It is not like passing or failing a final but taking all the exams in between in a ground hog day cycle (over and over again never reaching the final).

Anyhow, first things first.......What is wrong with my eyes?
We learned that there are other nerves involved with vision besides just the optic nerves (I think I remember the 4th and 6th nerves and I can't recall the third one mentioned). These nerves as I understand now are responsible for eye movement. They are also located where the tumor was and split before reaching the brainstem. During surgery, these nerves get irritated as they are so close to the tumor. Immediately after surgery I had really bad double vision which took a couple weeks to dissipate as the area healed. This was normal. What is happening to me now (small episodes of double vision when reading or trying to read while in movement -a car) will take time to resolve. It is a weakness in the muscles around my eye and also irritation of the nerves controlling eye movement. It sometimes takes 6 months to a year to improve/heal.

My worries about the papilledema I had and if it could return.....I will not know the current status on that until I see the neuro-ophthalmalogist (eye doctor) down there on the 17th. The eye doctor needs to dilate my eyes to be able to look into them and observe the optic nerves. It is unknown on what exactly caused the papilledema as I have so many tumors up there. The surgery would not necessarily resolve that problem. There really is not a solution to the papilledema aside from the medication (diamox).

Harley and I looked at the images. Understand that I have experienced two things: cancer (malignant tumors) and these benign yet slow growing tumors. It is still hard for me at times to want to fully comprehend the distinction as for me the cancer disappeared after treatment. That does not happen with NF2 tumors. I know this but get in swept up perhaps in fantasy moments forgetting that.

The point is that we were actually very excited to see the MRI this time and when we saw it our reaction was kind of like "Oh. Sigh. There is still some there. AND That other one looks really big now. Look at all those other ones." Harley was more patient at viewing the images (it is cool technology) whereas a couple minutes was enough for me and I was ready to put it away and not think about it until well after the holidays.

I have not seen the MRI report yet but I was told that it looks good (85-90 % of the tumor was removed and the others appear stable but of course are still there.) In my case the tumor cannot be removed entirely without leaving some hefty damage/side effects.

Then what I was totally unprepared to think about or talk about on my cloud 9 fantasy........when to get the next tumor operated on. I asked that in the last appointment. Apparently I must have still been compartmentalizing the situation as I was able to handle discussing/considering it back then.

This time around not so. I don't know what plane of existence I was on but when the doctor told me they could do the surgery in the spring I was just sort of stunned. That probably is not the right description. What actually happened is that when she said the spring I thought of these things I was planning to do and then like a 2 year old that just had his/her security blanket taken away my eyes started to well up until I could not contain the tears any more. I am not sure if my right eye produced tears but my left eye definitely does.

I got upset like when the anesthesiologist came to tell me it was time to go into surgery. One minute I was fine and the next I was falling apart.

This is not new news. While Harley comforted me he also reminded me that this is nothing I did not know. In fact, this was expected before I even had surgery. It is known that this other large tumor has to be addressed. I have known that and inquired about it for years as we were watching and waiting to see what was going to happen with the first treated tumor.

Really this other tumor was originally planned to be treated by now. If you recall. the right tumor grew quickly in 2004 leaving me with an immediate treatment decision. The plan was to radiate these 3 large tumors over a 2 year period. Unfortunately things did not pan out as anticipated and the first tumor got bigger.

I think before the surgery I was maybe speculating that I could get the second tumor radiated once the other two had been removed and debulked (thinking there was more room if it swelled). Really though, the tumor is too large. It will still be there and pose the same threat as did the other. At this time, the only solution for the time being is to remove as much of it as possible. I don't think I comprehended that point back then as the immediate concern was the current tumor which was larger and causing problems.

So here we are back in a near same place again (worrying about another surgery and tumor). As was before, it is best to get it done while I am strong (especially seeing as I did so well with the first surgery) rather than too late when there are irreversible problems. Yet I am suffering the same grasshopper procrastination as when I went through chemo. It is nice to start feeling good and not want to feel like crap again. As I got stronger through the treatments, it was hard to go back in. Just when I started feeling great it was time to do it again. I had a hard time coming out of surgery immediately afterward that I do not look forward to enduring again.

As I have been doing great in recovery I got on some wild fantasy that I could completely skip 2008 in dealing with any of this and having another surgery. I had the mentality of checking out and taking a vacation from NF2. I am still somewhat in that frame of mind. I told the doctor that I will not even consider surgery until at least the fall when I have my next MRI.

Plans for spring and summer 2008?
A) do some snowshoeing
B) climb the Columbia tower in Seattle
C) improve running to run some 5ks and maybe a 10k
D) paraglide off Tiger Mountain in Issaquah to celebrate my 15th year of remission from Hodgkin's Lymphoma - this is the biggest one that I have been waiting YEARS to do
E) return to scuba - this is another biggie I have been waiting years to do again; in case you did not know, I have been an avid diver since age 19 but stopped in 2004 after the news of the rapid growth of the right tumor which got larger after treatment
F) figure out some way to try rollerblading again - this was also a very big sport for me that I avidly did (completed 4 25-26 miles Seattle Super Skate courses) but have not done since 2004 before the radiosurgery treatment

As you can see, I have lots of plans to which a surgery would put a dent in all those things. I plan to play first - who knows how long that will last? You must seize the opportunity when it presents itself. I have to train to do all these things which would be an added bonus as I have to train, keep fit, and get ready for the next surgery anyway. So that is how 2008 is looking. As my friend Greg with NF2 says "Every day is a training day."

Earn the Pants

I am back to running again. I actually started a few weeks ago for the first time but had to quit after just two runs as the strange weakness episode happened and then I got sick. Wow! I lost a good deal of strength and endurance as my legs felt like jello and quivered.

The first time I made a goal to run for at least 10 minutes on the Redmond Ridge trail which I managed and then stopped at Kari's bog to stretch out. Following the stretching I ran for an additional 9 minutes which was the rest of the trail through the woods and then walked the rest of the way back. The second time I pushed myself to cover the 20 minute distance non-stop.

It does get easier and things seem to be improving quickly as this week I returned to running again and was able to go further and longer. The steroids really have made a difference. In addition, I was able to run three days this week AND go to the gym at least 3 days this week to do my weight routine and other cardio.

I decided to get a headstart on one of my goals for 2008 (run at least a 5k and hopefully a 10k this summer) by running once at the end of December and then again on New Year's day. On the first run (first since early December and 3rd run since prior to surgery in September), my legs definitely felt stronger but my shins and ankles became sore very fast. Even though my shins and ankles continued to burn throughout the run, I was able to maintain a continous run for 28 minutes (stopping only twice as I tripped once and I had to tie my shoe another time).

(Hehe - after that run is when I bought myself the pants that I will explain later. I was really proud to be able to do at least a 25 minute run.)

At the opening of the year of course I had to take a run. If I could do at least 28 minutes then I surely could push myself a little further for 30. Again my shins and ankles were aching. Time to work harder at the gym on those areas by practicing on the BOSU device. I forgot to bring my watch with me but I forced myself further up the hill at the end of the run where I had to have reached 30 minutes.

Today was another good run and upon thinking about it now I don't recall my shins and ankles getting sore. The weakness was mainly in my quads which began to feel like lead as I did my leg weight routine yesterday. I pushed myself to go up the hill again at the end to make at least a 30 minute run and to "earn my pants".

Earning the pants.........

What is that all about? ;o)

Well I have not purchased myself a decent pair of running tights for years. As a matter of fact, prior to this week I have only owned one pair which are from my bigger days and have to be at least 6 years old. Even though the pants are size large I have still been wearing them as they are spandex material which are made to stretch (or shrink) to fit.

Back sometime in 2005 when my balance was at its worst, I was wearing them and tripped as the dogs pulled on the leash knocking me down. Back then the slightest pull could send me toppling over and I had no strength for resistance to pull back. As a result, I slammed one of my knees on the ground ripping a hole in the cheap cotton/spandex material.

The hole was not very big so I have kept them and have continued wearing them with my thermal pants underneath. Realizing that I could use a second pair I finally broke down and splurged on a nice pair of North Face running tights on sale at REI after Christmas. However, they were still pretty spendy yet reasonable and still cheaper than most workout pants and clothes. (Now I remember why I have not bought myself some for so long.)

At any rate, I felt I had deserved them as I had never purchased myself a decent pair and because I waited so many years looking to catch a pair at a thrifty price. Yet, I still felt slightly guilty thinking someone who is a more avid runner or who has run a marathon is more worthy of them than I. Therefore, I came up with the philosophy of "Earn the Pants".

When I have gone running this week (I bought them after I started my running goal early - December 30th), I keep the mentality that I have to run a certain distance and a certain time to be worthy of the pants. It sounds silly I know but so far it has been effective. It mostly comes in handy nearing the end of the run when I finish going uphill which is really hard. At that point my legs really burn and feel like I am running through water and it is tempting to quit. At that moment that I remind myself to "earn the pants". :o)

Thursday, January 03, 2008

And We Return to Our Regular Scheduled Programming

I have been absent for awhile but doing well. December was a busy month. After the disappointing "episode" I restarted the steroids. I only felt the weakness for a couple more mornings so for a few days I limited my driving to the neighborhood a mile down the road which is the closest I can walk the dogs.

Just before the "episode", Harley was sick and it was passed onto me as the steroids started making me feel stronger but ironically began to depress my immune system. (I know.....weird paradox there. I was needing the steroids to strengthen my body while at the same time it made me more susceptible to illnesses.) Accompanied with the sinus pressure built up from the head cold I began having double vision again. The double vision was not extreme like when I was in the hospital but it made reading emails and writing them from my text phone or computer very straining and challenging. As the head cold proceeded to improve, it appeared at first that the double vision was dissipating. My theory, seeing as no one could offer me a logical medical explanation for why this was happening, was that the pressure built up in my sinuses were also putting pressure on my eyes and thus skewing my vision. However, this week and last week I have continued to have this intermittent visual obstacle which is extremely annoying. The jury is still out on what the heck is going on.

Oh yeah, you are probably wondering what happened with that eye appointment I had down in Portland at the beginning of December. Well it is a case of strange unfortunate luck. There was a big storm here in the NW which caused major flooding damage on the interstate freeway to Portland. As a result, the direct route to Portland was shut down. There was a detour option but the route traveled toward central Washington through Yakima costing hours longer of driving time and gas. In other words, it really was not a route one wanted to take unless it was absolutely necessary such as catching a cruise boat to Baja, Mexico.

When Harley spoke with the receptionist and tried to reshedule with this particular doctor he was informed that was not going to be an option either. As "unfortunate luck" would have it, they had just discovered that same week that the doctor was being transferred to California within 2 weeks.

So anyhow, I searched around Seattle to see if I could find another neuro-ophthalmalogist who could work with us, be interested in what I have, and tell me what the problem is and how to solve it. First let me tell you that there are few neuro-ophthalmalogists in the country. It is a specialty where one is board certified in both neurology and ophthalmalogy. That means such a specialist will have an understanding of vision complications related to brain tumors and other lesions or disorders of the central nervous system. We thought surely there must be some others in a big city like Seattle.

Interestingly I found another doctor who specialized in vestibular disorders which is what I have. "GREAT!" , I thought. "What a bonus - we can address both my balance dysfunction and vision problems at the same time. I can be looked at holistically which is really needed in my case." I became more excited reading about this doctor and my faith in his ability to understand what is happening to me. Sigh. My fervor was short lived. My neurosurgeon worked on getting me a referral there and the office called Harley to tell him that I would not be an appropriate patient for their clinic. Apparently my case is too "complicated" for the only full-time neuro-opthalmalogy clinic in the 4 state region of Washington, Alaska, Montana, and Idaho. How do you like them apples? We were told to go back to the University of Washington where we did not feel we were getting the answers or level of care I need. So off I go mid-January to OHSU to see the partner of the doctor who was transferred to California.

I also had my first MRI post surgery on December 21st. My sister brought me so we made an afternoon and evening of seeing and doing Christmas activities in Seattle.

Then after all that of course were holiday projects to complete and holiday gatherings to attend.

Tuesday, January 01, 2008

Happy New Year 2008!

Harley and I while waiting for the malfunctioning Space Needle fireworks to go off for real so we could light our awesome home ones.

Karen Stueland, Me, and Jeanne Avis after our private fireworks display at the Avis party next door.
Harley wearing his New Year hat on backwards with Sam Stueland in the background at the Avis New Year's Eve party. We are waiting to watch on the big screen tv the fireworks to be lit off the Seattle Space Needle.
Click the lighthouse icon in the post title to view additional photos from New Year's Eve.