Saturday, November 26, 2005

Ominous Visitation

A very strange thing occured to me just now. I was going through my hall closet (that is what I have been and reorganizing the house and our lives so we can think and do). Anyhow, gifts were somewhat haphazardly thrown on various shelfs of our linen closet (for towels and bathroom necessities). On the bottom compartment in the floor area I had thrown gifts, lots of shopping bags, an old plastic shower curtain, two old shower heads (one that did not accomodate with our faucet), and I don't know a bunch of crap. LOL

While the other shelves were somewhat organized I completely emptied the compartment next to the floor which is about 2 and a half or three feet high. You would not believe the amount of empty bags (or shall I say useless bags) I had jammed into this small space. What on earth for? What the heck do I need all those bags for?

Upon emptying the space I vacumned any dust and wiped the wood floor down with furniture wipes. Then I neatly tucked all the gifts (even those on various shelves) and tissue wrap into this one space. Ahh! I was satisfied!

However, after finishing my arrangement I noticed the other "stuff" sprawled out all over the floor (such as the 50 gazillion shopping bags). As I sorted out which ones to put in the recycling and put aside the shower heads and curtain, I came upon an old back purse of mine. It is a cute little purse and in good shape except that the strap pulled out on one side.

Not knowing how I would sew this back together (LOL I don't sew) and realizing it was too small for my needs anyhow, I set my mind to putting it in the donation pile. I just can't bring myself to throw things out and who knows what crafty person is out there and would be tickled pink to find it at the nearest thrift store. Before tossing it aside in the Value Village boxes, I thought I better peruse through it first to make sure nothing important was left in there.

There were only two pockets (one a zipper and one to place credit cards in the front). Nothing was in the small main compartment. For some odd reason I decided to feel behind the little mirror on the flap. To my surprise there was something tucked behind it. "A business card?" I thought. What I pulled out just literally floored me.

Okay let's flash back about 13 years ago when I seriously thought it would be my last Christmas. I was diagnosed with cancer just days after my 21st birthday and started Chemotherapy in October of 1992. I remember the day I was given my diagnosis which was a complete shock. My hands shake as I write this just thinking about it.

I recall the day I went in. I was having some breathing problems and was really tired. I had been treated for what was thought to be asthma for a month before I found the lump between my clavicle and neck. Once the "lump" was there the doctor was baffled and ordered a chest xray.

Next thing you know I get a call from the doctor telling me that I did not have a lung infection and there was something unclear on xray. He consulted with some other doctors at the same facility that wanted to run additional tests. He did mention that it was possible I may have had Leukimia but not likely.

Being a college student I called my mom and told her but thought it really would not be a big deal. Fortunately my mother drove from Wisconsin to Upper Michigan to accompany me at the next doctor visit that friday. Thank God she came to the appointment with me because I could have never in a million years fathomed what was about to take place.

We first saw the family doctor who informed us that we were being sent to the oncology clinic upstairs where they wanted to give me more tests. I can't tell you what was discussed because I blanked out the moment the oncologist said I might have "CANCER". My younger cousin (who was 10 at the time) passed away a year prior to my diagnosis from a rare form of cancer. Even though I had very astute hearing at the time, I had no idea what the man said from that point on. I off envisioning my entire funeral (being buried in the ground on a crisp and cloudy fall day and the whole dramatization).

Next thing I know, the guy wants to draw my bone marrow. "You wanna what.....stick that huge horse needle in my back???" At that moment I did not think it could get any crappier because the pain of a bone marrow draw was like nothing I have ever known! To top it off it had to be done twice (once in each hip)!!!!!

After the procedure I felt I could barely walk let alone sit down. I tried to sit in the waiting room and the pain was too severe so I had to stand. I could not help but cry silently. I was embarassed and did not want anyone to see me but there was nowhere to hide in the small waiting room I was situated in. There was one wall I could face with a huge painting but I still could be exposed to the receptionists on the one side and anyone who happened to walk by the glass waiting room wall on the other side.

There was only one other person in the waiting room who was a gentle older man sitting in a chair behind me. I tried my damndest to hold back any tears but they slowly rolled down my cheek beyond my control. Still conscientious if anyone were to notice me, I would quickly glance back at the man to see if he was looking. He had his eyes closed and looked like he was concentrating really if he were absorbed in prayer. I thought to myself that he must be here waiting for his wife or another loved one who may be dying from cancer.

Happy that he was not looking but pondering his existence in this same space made me think about the gravity of his situation. Here I was very self conscious and vain and feeling sorry for myself while the poor man was stricken with grief of being a loved one of someone afflicted with cancer. It seemed like it was taking my mom forever to talk to the doctor so I had a great deal of time to stand out there and think.

Finally she emerged and we were able to leave. Before I made it out the door the old man looked up at me and gently touched my arm. I looked down at him and in the most sincere and hopeful facial expression and voice he said "God bless you". It was literally quite profound that someone with their own burden of emotion would take the time to think about me (a complete stranger) and pray for me.

Originally I was supposed to (or I thought) that I was only going to have 3 months of chemo or 6 treatments. When it had beaten me the worst was just before Christmas of 1992. My last treatment before the holiday I learned that I was not even half way finished when I thought I was closer to being done. Somewhere there was a miscommunication and the plan was 12 chemotherapy treatments over 6 months of time.

I was so disappointed and was so sick at the time. When I came home I thought it would be my last Christmas. Nobody had decorated the tree yet and everyone seemed kind of in a glum mood. I remember thinking "Well damnit I am not going to go out like this!" I remember getting the family on the stick and encouraging decorating the tree. I did not have any money so I made Christmas gifts that year that I am sure were pretty cheesy. LOL

I made it through the holidays and once I accepted that my treatment was going to be a little longer, I think I was okay. I don't know who (maybe my mom, one of her friends or my friends) gave me these little "pass it on" cards the size of a business card. One of them had a purple crocus flower on it poking through the snow. The words "Miracles happen to those who believe in them" were inscribed above the picture.

As it turns out and ironically, my last chemotherapy treatment was on April 9th, 1993 which was Good Friday. Not only was it the Easter weeken (when you see crocuses popping through the snow) but Good Friday was a day that Jesus perfomed yet another miracle. I did have a short stint of radiation afterward as a followup precaution but that is my day (April 9th) that I was given a second chance at life.

This past year has been a rollercoaster ride and I have wished that I had that card and a miracle. In the spring of 1993 I had a friend who was having a challenging time so I thought I had "passed the card on" during her confirmation. For years I thought about the card and thought about its significance.

Oddly enough I was wishing I still had the card and wanted that miracle over the last few weeks (primarily when I had to get my checkups and another MRI). Then I thought to myself "You don't need that card. You just need to believe" and that was that. Even though I am bumping around and still falling on my keister sometimes, I can drink from a glass again and I just learned to close my right eye and slightly open my left. Those may seem like simple things to you but are a miracle to me. Why? I have not been able to close my right eye without closing my left and I could only drink from a straw for a year! On December 14th of last year half my face seized up and was paralzyed. I only had 52% facial function on the right. Thus the latest progress had made me estatic!

My smile is getting near to what it was before. Now hopefully my balance and vision will be restored. I am enjoying feeling better and improving in areas but I enjoy it for the moment as I never know what is around the next bend. It has been a year and a half since my treatment and I was told it takes around two years (for which I thought was going to be symptom free aside from a few headaches.....boy I was wrong).

In the back of my mind I know I still have two more tumors to treat and I don't know how that will go. I wonder if I will get lucky or endure the same consequences as I have over the past year and a half. If the treated tumor does not shrink then I might have to get open brain surgery. The doctors do not seem to want me to think about this but it is hard to avoid as I know I will have to make another decision in the future. I remember when I had chemotherapy that I would be sick the first week and feeling good again right when it was back to go in a feel like crap again. I guess that is my fear.......just when I start to feel somewhat restored again it will be time to go back.

When I looked behind the mirror today I pulled out that card! No, I don't need a card to have a miracle or something good or positive to happen. However, I look at it as a sign. When I thought I lost it, my hope has been restored. Believe what you want to believe but for me this visitation or presence couldn't have come at a better time! Now it serves as a reminder to not give up.

Sunday, November 13, 2005

My Current Read

I don't know why but I stopped reading books for sometime now. Maybe I got bored or maybe it just wore me out. Of course I still read things on the internet. Maybe I was getting involved in discussions and research.

In any case, there are two books I am reading right now.

One is more of a daily affirmation kind of read titled "MIRACLES ARE HEAVEN SENT" by Honor Books. It is a collection of scriptures, quotes, stories, and poems relating to the mysteries of God. Each verse provides me a chance for reflection and uplifts my spirits.

The other book which I am really enthralled in at the moment is "Lucky Man" by Michael J Fox. In his autobiography he intimately shares his life and his current battle with Parkinson's Disease. The book gives me a sense of comfort and paints a vivid and honest account of his journey from childhood into adulthood.

I have always admired his outlook despite being diagnosed with an incurable disease (which may soon change with the recent advances in medical science). The point of the title is that he feels he has become a "lucky man" because of his disease. As difficult as it may seem sometimes, I feel that my own journey with NF2 has afforded me opportunties that I would not have known otherwise. In many ways I often think of how "lucky" and blessed that I have been.

Saturday, November 12, 2005

Human Pin Cushion

Disclaimer: I am backing up in time a little here to catch you up on my doctor visits and how I felt at the time. Since then, things have been looking brighter but I want to share with you the uncertainty and anxiety that NF2 patients face on their regular followup visits (occurring typically every 3-6 months).

On October 25th I had my 3 month followup MRI which I became anxious about a week after my last. Why? Because a week after my last MRI in July I had a headache behind my left eye which is the opposite the side of the tumor I had treated. Thus, one becomes paranoid about every little symptom or ache in fear of the other tumors growing. It is similar to the feeling a cancer survivor experiences once in remission.

How would I know what a cancer patient feels like you ask? I have lived through both. I remember that within a month of being in my remission I started having chest pains due to the scar tissue left behind and the weakening of my bronchials from radiation post chemotherapy. I remember internally freaking out as I would have a conscious nightmare that I was having a relapse with each pain. This lasted for years.

Likewise, people with NF2 experience a similar effect.....fear of the unknown but knowing what could possibly happen having lived through part of it. Prior, an MRI never bothered me really because my tumors started small and only grew about 1-2 mm every 6 months. It was not until I had an unwelcome surprise of a rapid growth of one over 6 months that MRIs became an anxious reminder of the tumors residing up there. It would not be so bad if I just had one, but I have several potential bombs just waiting to explode.

For the most part, even now I do not fear the MRI machine as do people who suffer from claustrophobia. In fact I routinely fall asleep in the machine. Back when I could hear it I used to pretend that I was an underwater welder. But drats! It it that dang needle that I have never been able to befriend after all these years!

Before you roll your eyes at my phobia, let me first elaborate on why the needle is not my friend.
a) my veins are small and hard to find
b) if my hands are cold, I appear to have no veins at all
c) once in, it takes a skilled person to be able to actually insert the needle correctly in the vein (from what I have been told, the veins either roll or the needle pierces through them)

Put it this way....I would have made the world's worst heroin addict because I would have never gotten any drugs in the vein! LOL All over the country at many different facilities there have been problems. Sometimes people who should have been skilled even make a literal bloody mess (meaning blood spurting out.....happens if the wrist is attempted). For past MRIs I have had facilities call in anesthesiologists to insert an IV for contrast dye or I have been sent to the chemo nurses beforehand.

I won't go into details of why I did not go to the chemo ward this time own irresponsibility. Anyhow I was there and realized that it was a rainy cold day. No matter how warm you dress it does not make a difference because you are given scrubs to wear during the MRI. That is fine in the summer when it is warm but in the winter my arms and hands get cool and the veins shrink oe hide.

I hopped on the table and hesitated for a brief moment realizing this. But then I thought "Well surely they remember me as I have been here every 3 months for over the past year and I would highly doubt anybody else has as many tumors as I have in my head." As a matter of fact in August 2004 I was so sick that I do not even recall getting the injection and friends had to drive me to Seattle for the procedure. The ladies in the office remember me and had told me a few months back that I was looking much better (than when my head was inflated like a melon). Therefore, I thought the techs would remember about my challenging veins. (How foolish and naive of me eh?)

First, they do the scan without the dye. Then they pull me out of the machine and give me the injection (or rather they insert an IV because of my small weak veins). Keep in mind that I am completely deaf and have my head enclosed in some kind of cage to keep it lined up correctly. Thus not only can I not hear, but I can't see what is going on or when the needle is going in or if it is working or what. I just have my arm and hand out there waiting for that part to be over with.

I think I do recall reminding the tech that only the hands work and that they may have to put some hot towels or a pad on them. Last time he got my vein in one or two tries. I cannot remember. He was very gentle so it was not so bad. However, my right hand was a no go. I knew my hands were probably not warmed up enough. I think in the past at other places they have left hot towels on for about 10 minutes.

I was hoping he got the vein but I did not feel the cold rush of contrast fluid pumping in my hand and up my arm. "Dang!" I thought. "Okay just be calm. He is being gentle and will get it on the next try." Unfortunately the next time he chose the side of my wrist which made me very uneasy. Visions of wrist nightmares in the past filled my head (not to mention that it did hurt in my wrist in the past). I felt the anxiety building but tried to remain calm.

Again he was not able to get the vein. I knew once I felt the cold alcohol wipe on my wrist that we had to start over. I could see his face and when I inquired he shook his head no.

Suddenly the other tech came into the room and both of them began to investigate my arms and hands while I lied deaf in my lonely contraption. It reminded me of my record of enduring 7 pokes after chemo had finished years ago and I needed a CAT scan. Back then my veins had been badly abused from chemo injections and it was difficult to find a healthy vein. I recall feeling like a lab animal sprawled out on the table while medical staff (literally 5-8 people) pawed at my hands, arms, legs, and feet desperate to find a useful vein. In fact, thinking back on the vision now reminds me of a vampire movie where the poor victim is sprawled on his back with the beasts feeding off every blood rushing appendage.

I tried to draw myself back to the here and now. "Ok. That part of life is over. I am just here to have an MRI and you have got to work with these veins to get this scan done", I was speaking in my head.

I think I told the techs that the record was 7 pokes for in order for them to realize the gravity of the situation and that it really can be challenging to get a vein on me. Then I felt this sharp jab into my thumb. I was clenching the cage with my free hand and I could not help but outburst "Dammit! Ow!" That was the other tech. Unfortunately he was unsuccessful.

Then he began looking up my arms and I told him that it was not going to work. I was pretty upset by now but tried to hold it back. I just just could not help the last outburst. What in the heck did he poke the top of my thumb near the joint? Nobody has even done that!

Despite my warning he decided to try the arm on that hand anyway. The other tech (the gentle one) held my hand and I think I squeezed the crap out of it and embedded my fingernails into his nail beds (not purposely). This one hurt too! I also remember having a fit and moving my legs and fit around. Again I cussed beyond my control. Then something totally uncontrollable happened.

I was so upset that I began to hyperventilate! If you have been reading my blog for awhile you will remember back to the time I was at a beach with friends and this happened. I could not believe it! The only thing I can figure is that the ordeal triggered a memory or flashback of going through cancer that was emotionally overcoming. I felt like I had no control and I had to close my eyes and focus really hard to get my breathing back to normal.

I probably really freaked the techs out. Lying there with my eyes closed they could not communicate with me. I had to think of something to try to calm down and breath normally again (like a meditation). In my mind I envisioned my friend Laura at the beach telling me to slow my breathing and watching her lips expel slow inhalations and exhalations. I kept that image in my mind until I could breath again and feel the warm sun and cool breeze from the water in my memory. Then I opened my eyes.

The techs wrote to me inquiring if I was ok and looked a little worried. Unbelievably I was able to crack a joke then and remark that it was too bad I could not drink the dye instead. After that episode the tech I swore at did not attempt to poke me again, LOL It probably was just as traumatic for him as it was for me as he looked kind of terror stricken when it happened and he asked again afterward if I was ok.

In all it took 6 pokes to get a successful injection (using only a butterfly needle). After my hyperventilating act I was VERY specific of only using the hands and leaving the hot pads on for longer. The right hand just would not go that day so what eventually worked was the left hand.

When I was thinking about this sometime over the last week I remember the courage of the little boy with leukemia. I think he was about 5 years old and I found out months after my remission that he passed away. One time back in the cancer days, I went for my blood test (which they took out of my IV). An older lady and I were there waiting and this bright beautiful beaming boy hopped up on the chair and braved the needle. We were so impressed because we were such ninnies about the whole needle thing but this boy was unfazed and brimming with life. I wish I could remember his name. Now that I remember I would like to think of him and the perserverance he showed despite all the pain I am certain he succumbed to.

Wednesday, November 09, 2005

God's Amazing Gifts. If you look, you will find them.

After a week of rain and darkness, something amazing happened when I went for a walk with the dogs on Sunday and Monday afternoon. On Sunday afternoon I noticed the sun peaking out and grabbed the chance to walk the dogs on our "magic trail". As soon as I left the house it started to shower again. Drats I thought as I did not wear my rain jacket but still had ample enough layers (helly hansen long underwear) and my waterproof shoes.

While driving out of the wooded part and approaching the open field near the across from the farms, I witnessed something magnificent! It was a huge bright rainbow. The sun was shining but there were still sprinkles creating a marvelous site!

What was so unique and unusal about this rainbow compared to the many I have seen in my lifetime, is that I could literally see the end of it and it was the brightest one I had ever seen!. While looking out into the field I realized that I would have to pull over to really focus on it. The rainbow literally traversed down to the ground in the middle of a field.

No, I did not see a giant pot of gold but what I did see in my eyes was completely surreal! I saw a brown image behind the rainbow which could have been either an old rusted car or a tractor. In front where the rainbow was bursting out with a profusion of color was a retiring dahlia patch! It was the only one around. I wish I had a camera because the image was so perfect and unbelievable! The beauty was a sheer delight!

I continued to drive and witnessed the entire rainbow spreading over the Nestle farm valley. The image was storybook with the sun pouring in from the west over the green and gold fields of the Nestle training facitlity (called "The farm") and plantation. To the east were clouds of white and greyish blue in large puffs throwing an amazing hue of color. The farm is painted white with some red buildings and a huge painted white and black cow. Across from the farm long white fences bordered by trees with golden leaves dot the road through the field to the picturesque buildings in the distance. As I drove east, I can not spot the river through the plantation of trees with falling yellow leaves and in the distance I could see snow resting atop the cascade mountains.

Just when I thought it could not get any more perfect, I was blessed with an even more glorious site on Monday afternoon! When I rounded the bend and sprung from the wooded area, There was a double rainbow! The second rainbow above it was much lighter but could still clearly be seen. The more vibrant of the two also continued to produce almost a third continueing directly from its lines of color.

The sight was so fantastic that I found myself needing to pull over a few times. When I reached the trailhead, a young woman pulled over to take a picture but the sight was much fainter and the powerlines running along the main road were in the way. I directed her to drive up to the Nestle Farm area where the rainbows looked glorious and a picture perfect postcard shot could be taken.

The rainbow almost seemed to follow us and I could see it along our walk. When we first got out of the truck it started to rain or maybe slightly hail tiny bits as seen on my dogs' coats. We jogged a bit in the sun and rain or hail under we reached the treeline.

I was surprised to see the rainbow through the trees still when we reached the pond which is our turn around point. The sunset was just as glorious and it was a hard choice of which side to gaze at (east for rainbow, west for sunset). The sunset was beautiful in puffs of pink and peach jutting out from the pale whitish yellow of the sun behind the clouds. Alas the gifts were coming to an end and we needed to turn back and head for home as it would be almost dark by the time we reached the truck.

Happy Belated Day of the Dead!

It took me awhile to create my master piece. I did a great deal of thinking about it and wanted something which would be cheerful but also significant in some way. However, I am not particularly skilled with carving and I do not have the patience to carve something extravagant which would require a great deal of time. Therefore I wanted something simple, easy, but that would also leave me with a positive presence. While under pressure to get it done before the holiday had passed, I carved my pumpkin Halloween night actually.

While in Arizona we visited the Mesa Southwest Museum and on display was a fantastic explosion of cheer and color in their traveling Day of the Dead celebration (Dia de los Muertos) exhibit.

It was so beautiful and seeing the exhibit brought beauty to the concept of death. Understandably no picture taking was allowed for this one section out of respect. So from my memory the creation of my carving represents the impression of light heartedness and wonder the display bestowed upon me.

Unfortunately the top of my pumpkin was a little soft near the stem. While hammering some tools into it to create the eyes, I put a large crack in the top of the head that ran from the eye socket to the lid opening. Because the picture was taken in the dark you cannot see it. Within two days (on the 2nd of November) my pumpkin succumbed to its injuries and the spreading softness disease. The mouth was so wide that I when I came in from walking the dogs on the 2nd, the fate of my pumpkin was a collapsed face.

Oh well! At least it died happy, eh?

Sunday, November 06, 2005

Meet Mr. Eggplant

Ahh! I finally figured it out. Aside from getting disconnected continually with our cable modem, I was able to find the source of my frustration in the settings of my popup security. Thus, I am once again posting photos. Exciting isn't it?
Mr. Eggplant was was born of my imagination during a pumpkin painting activity we engaged in at the Bellevue Community College Silent Voices (ASL club) costume party on November 3rd. Seeing as my other pumpkin was short lived, I was happy to have a replacement!

Old post 11-06-05:
Okay. Yeah well I was hoping to share some photos for you but this software is not working for me right now. I am following the instructions to add pictures from my computer but the window option is not popping up so I can choose some.

So I guess my frustration is a hint to go to bed now and get some sleep. Don't you just hate it when these things don't work???????

Old Dreams

Sometimes I feel so old. (sigh)

Harley was digging through old paperwork in the office and came upon some lists I wrote just 2-3 years ago. It amazes me when I look back at it on how many things I have done. The lists were mainly task lists of things we were to accomplish and my contribution. Sometimes I run across lists from when I was a supervisor for the WSDA too.

At first it struck me of how much better my hand writing was. It is almost unrecognizable to me now and I have to ask "Did I write that?" It is obvious that they were written by me but even with my good memory some of them I have no recollection of writing.

One list struck me with an eerie and melancholy sadness however as I see potential lost or vibrance and youth stolen. The list is as follows:

I want to fuel my body

1. So I can have the energy to get up in the morning and make the most of my day (gain fulfillment from production).

2. So I can provide an example of good health and success without using drugs for my brother, sister, and other young people.

3. So I am able to compete in the Seattle Super Skate (25 miles on rollerblades) in under 2 hours and improve my time each year.

4. So I have the energy and drive to pursue activities of my interests and dreams (rock climbing, hiking, etc.).

5. So my mind becomes clear and focused so I am open to my career aspirations in life.

6. So I have the strength and stamina to protect myself and to be prepared to assist and help others.

7. So I can still have stamina to contribute to remodeling our home at the end of the day. (This was assuming I would be putting in a full day of satisfying work making a contribution to society.)

8. So I can climb to the summit at Mt. Rainier and hike to the crater of Mt. St. Helens.

9. So I am still healthy and fit enough to continue scuba diving when I am in my 70s and 80s.

I never had a desire to climb Everest but I did have aspirations to hike to the base camp of Everest and climb Kilimanjaro if it became feasible.

I had somebody ask me yesterday what my hobbies were. Truth is I have a very hard time answering that these days as I can no longer do them or to the extent that I used to.

Before bed I reminisced about the days when I could rollerblade along Alki beach with such freedom and gracefulness of movement. I would glide in a tuck position from one leg to the other like an olympic speed skater.

It was such an exhilarating feeling. Even though there would be lots of people there in the summer months as long as the path was clear I felt solitude and serenity as the wind slipped through my hair and the smells of sea salt and wild roses permeated my senses.

Often I would go at dusk so I could admire the beautiful crimson sky hiding behind the black outline of the Olympic mountains. My balance was so well that I could continue in a tuck position and glide forward while my head was turned in a gaze over the waters of Puget Sound and the majestic mountains.

You see, it was moments like that when I felt really alive. Now those days are gone and I have to admit that now is a difficult place to be. I have to try to push those memories to the back of my mind or somewhere where they are not thought of often. Sometimes I can feel very an important chunk of my soul was swallowed beyond my will by a dastardly force. To cope I try to accept my fate but when I recall all such moments not so long ago, I feel like a very aged woman looking back in time at photos of her prime and youth.