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.