Welcome to my journey with Neurofibromatosis type 2, known as NF2, a genetic mutation which causes numerous tumors to grow within my brain and spine. Since 2004, I have undergone radiosurgery and 3 brain surgeries for 7 brain tumors. Life with NF2 is definitely a test of faith and a challenge to keep positive. Join me on my harrowing adventure to keep active and live life to the fullest!
Monday, November 30, 2009
The Surgery - Are you sitting down?
The surgery again is a very typical procedure for NF2. Since the hallmark of NF2 is bilateral acoustic neuromas -AKA vesitbular schwannomas (tumors on both auditory nerves in the brain on each side of the head), most have this type of surgery at least twice.
Above is a comparison of MRI images taken of my brain over the last 5 years. The top left is the latest date and the bottom right image is the most recent.
Top row left to right:
1) August 2004 2) April 2006 3) September 2006
Bottom row left to right:
1) December 2007 2) March 2009 3) August 2009
As you can see, I have been dealing with a number of tumors and just not one or two. In the first image from 2004, the large tumor on the left (which is actually my right side) had become larger after the radiosurgery attempt to stop growth in July 2004. Although it begins to blacken on the consecutive images, the outer perimeter was bright white indicating the tumor was very much alive. In September 2006 you can see how my brainstem is getting squeezed between the 2 tumors and was nearly pinched off within milimeters prior to my first surgery a year later in september 2007.
on the bottom is what it looked liked after the September 2007 surgery. As you can see there is still tumor left behind because it is attached to my brainstem. The removal of it could be very disasterous and cause me harm. Therefore, as much of the tumor is removed that the surgical team feels is safe to protect me from damage.
How this is done for such a large tumor from what I understand is that they get inside the tumor (sort of like puncturing an orange). Then they use a sonicator which vibrates and breaks up the inner material which is then sucked out. What is left behind is the outer portion or "shell" of the tumor adhered to the brainstem. This procedure is what is know as a "debulking" surgery. It means they make the tumor smaller and take out as much as safely possible but do not do a full removal.
Now about the other tumors everywhere.....In 2007, they were able to remove the tumor adjacent to the vestibular schwannoma. This additional tumor was of a different type known as a "meningioma" and was not adhered to nerves. Therefore, they were able to entirely remove that one.
Now, to the surgery this October......Since 2004, we were very aware that I would most likely need to have surgery on the other vestibular schwannoma which was not radiated. Further, with the great degree of difficulty I encountered from the radiosurgery for the first tumor, it was not a good idea to try radiosurgery again for this tumor type. It just took me this long to accept it. I was told I needed to have surgery again a year and a half ago but I was not ready yet. :-) In January 2008, I was doing pretty well with recovery from the first surgery and I felt I really needed a break before doing it again. By September 2008 I was doing great and there did not appear to be significant growth so we postponed surgery.
Unfortunately, my scan in March 2009 revealed signifcant growth where the tumors needed to be seriously addressed. The tumors seemed to merge making it unclear that it was not one large tumor. We believed it was just 2 tumors again but when they opened me up, they discovered the mass to be a cluster of 3 tumors in addition to the vestibular schwannoma on the acoustic nerve.
At my checkup last month, the pathology report indicated the cluster of 3 tumors to be of 2 different types (a trigeminal schwannoma on the trigeminal nerve and 2 more meningioma). I believe those tumors were removed entirely. It will take some time to see the result on an MRI scan because the swelling needs to go down of the scar tissue. If you will notice the tumor removed in 2007, continues to get smaller. It takes a long time for swelling to go away.
The picture of the incision is from a day or 2 after the surgery. It is very typical and the approach is known as "retrosigmoid". It healed quite nicely and I feel that it is covered by new hair.
Question you may be pondering.....
If some tumor is left behind, will it still grow?
Yup! Hopefully mine will not grow back for a long while and not until some other treatment becomes affected. There is no cure. That is why it is important to me that you help me to support and fund NF2 research.
Please feel free to ask me any questions on the blog and you can ask anonymously if you prefer.
Thursday, November 26, 2009
Today We Are Very Grateful
Weeks before my surgery, we decided to celebrate Thanksgiving at our house as we were not sure how well I would be and if ready for long travel. It turns out that my dad had to go to Finland for work this week leaving mom on her own. So it was a perfect plan to have her over with my sister.
As you can see, I am very alive and well and the reason we all are most grateful today. Quite a change from the previous pictures, eh?
I will get back to continuing the story and explanation of the surgery hopefully tomorrow. A brief update for now is that at my checkup in Portland on Nov 5th, I was given medical approval to walk the Seattle half marathon this Sunday. (sorry if I am repeating info from a previous post) With the extremely short training time, I got to it right away and the day after my friend's memorial on the 7th, I walked 48 miles over the next 8 days. I tapered off to shorter walks last week and this week to rest up for the event this weekend. Sunday we did our last long training session of 8 miles and then I have been doing short incline and hill training everyday since.
Now it is just a matter of being able to get up before the crack of dawn on Sunday and stay awake for our 4 hour journey in the rainy and cold PNW.
Saturday I will be easing back as we need to go to the expo and then we are taking our mom to the christmas lights at the botanical garden.
Hope you all had a wonderful thanksgiving!
Saturday, November 21, 2009
1 month post surgery anniversary
Yay! I made it one month post surgery with a very remarkable and rapid recovery! Above are my photos immediately after my surgery 1 month ago today when I was in the recovery room and ICU. I am pictured with our friend KC while Harley takes the photo. When waking up from a brain surgery, it is rather common to be nauseated and for me, I tend to vomit. First of all, the being revived part is a huge shock to the body and a difficult one for mine. This time however, was much more tolerable. Because I ate smart the day prior and kept it light and not spicy, there was not much to vomit and it did not burn my esophagus or mouth. I threw up a little but in the photo I am dry heaving more than anything. It is not fun but I felt more like I could handle it this time.
After my 2007 surgery was a terrifying experience which I have been dreading for 2 years as I knew I needed another surgery (I put it off as long as I could). Back then, I reacted violently to the anesthesia and the revival process where I was rudely awaken by chills, convulsions, and constant hard vomiting. This time they used different drugs to bring me to consciousness more slowly which was so much better!
So today -not too incredibly exciting as I have been suffering bad migranes all day and another one is coming on at the moment. So my production was all shot for the day and I actually took a real "rest" day where I did not go to the gym or walk the dogs. As a matter of fact, I took 2 naps and got an additional 4-4.5 hours of sleep!
I HAVE been back to the gym and it felt great! My first day was Monday which was exactly 1 month since my last visit (Oct 16th before we left for Oregon). I also managed to go last night and do some resistance exercises, abs, and some very light weight lifting on my arms. After not working them at all for a month due to medical restriction, it felt heavenily to put them to use.
My weight did pretty good (lost 3 lbs but then gained 8-10 which I had planned for). I have about 5 lbs of fat I gained to lose. I know it is fat because when once I could eat again and was on steroids, I sort of went nuts eating anything I wanted binging on all sorts of sweets. I have been trying to wean myself off chocolate (the after halloween candy on sale sure did not help matters) and eat more normal healthy food. However, I cannot seem to break myself of that gigantic container of chocolate covered raisens Harley opened which was intended as a gift for a friend (sorry Mike!).
Day of Admittance - Surgery Day
It was rather nice and laid back to wake up rested at a more reasonable time (9 am?). Instead of waking at the crack of dawn at some crazy hour like 4:30 or 5 am for a 6 am check-in, I could sleep in because I did not have to be there until noon. :o) Now that's the way I like it!
I half had an insane idea to get up and go for a run with my extra time. Fortunately, I came to my senses and remembered that I cannot eat anything. Still the thought was there until I also remembered that I cannot DRINK anything. Now that would just not fly after a run! Therefore, I took a short morning walk with my parents, their dog, and my sister around the neighborhood and through the lovely fall canopy draping the woods.
On the ride to the hospital, I started texting people in my text phone list (it is not very large) to tell them I was having brain surgery. I got too busy beforehand and did not have time to let some people know before I left home. I also updated posts about the surgery on facebook using my text phone.
I was a little stressed out because we got lost (Harley was using "Lola" - aka GPS) and actually was about 10 minutes late to my check-in.
When we got there, things went rather quickly from one to the next unlike before. Since I was the only brain surgery patient for the day, there was no waiting and they had my surgery time scheduled. Shortly after I arrived, I was pulled out of the hospital admittance waiting room where my family and our friend KC stayed. Harley came with me into the admissions office.
During admissions they verified who I was, who my doctor was, and what procedure I was about to have. They also asked if I had filled out an "Advance Directive which, LOL, I kept confusing and called the "Prime Directive". But since it had only been 2 years ago that I filled it out for my last surgery, it was still valid and I did not have to go through that whole process again.
The "Advance Directive" is a long legal form you sign choosing the instructions you want should something happen to you rendering you unconscious. You need to appoint two people to ensure medical staff carry out your wishes and a witness to sign it. It can be a difficult emotional situation if you are caught off guard. I did pretty well the first time and read it while my family had went to the cafeteria to have breakfast. When they returned, I was ready to maintain composure and explain what I had decided and what I wanted. I chose Harley of course as the primary person of responsibility and my dad as second. You want to choose somebody who can make logical decisions and handle making difficult ones if necessary (unplugging life support).
So this time we were able to skip all that and move along. They were ready to take me already down to surgery prep when I finished with admissions which was maybe 15 - 20 minutes long! Sadly, I had to leave my family behind as only 1 person can be with you in surgery prep due to limited room. Surgery prep is an open room with 4 beds. You basically get dressed in the hospital gown, several medical staff come to ask you who you are and what is being done to verify it is correct, IVs are drawn, your head is marked with a marker to show where the surgery location is, and the anesthesiologist comes to talk to you. During this whole process of time, family members/friends can take turns coming to see you to wish you luck and say goodbye (for the morning or afternoon of course ;-) ).
You are probably wondering what happens as I cannot hear. How do we communicate with so many people coming and going? During this time and also for admissions, the hosptial provides me a real time captioner for accommodation. A captioner is somebody specially trained in court reporting and the use of court reporting equipment. The captioner types up everything being said very quickly "in real" time that I read on a lap top computer. So it is pretty much like having a normal conversation with me except I am looking at a computer instead of directly at the person speaking.
There was a lot less time for visiting as I was taken into surgery sooner. So I had a very brief moment to share with each person. After they had all left, I tried to get myself into the frame of mind for surgery. I carry around a "surgery binder" with all my medical information but also had some notes and special cards from my last surgery which I read. They were notes of love and encouragement.
One in particular was from my friend Skip while we were having a lunch visit. He always was great about writing to me and even always brought his own notebooks! One conversation we had was particularly touching so much so that I wanted to keep what he wrote down to remember it and take it out at times like this (at the time he wrote it I did not know I would be having 2 brain surgeries). It uplifted me, reminded me of my purpose, and gave me the strength to face the challenge ahead.
Oh, about my friend Skip.....if you had not caught on from previous posts, he is the special friend of mine who passed away a little over a week before my surgery. It was a hard week (not only did my good friend die but I nearly caused myself to go blind in one eye by accidentally mistaking a bottle of nail fungus medicine for eye drops and putting it in my eye!). How I channeled my grief and compartmentalized it, was to approach the surgery as the last lunch date we never got to have. The day we were supposed to meet, his blood counts were not good and they admitted him to the hospital where he spent a month for the most part.
So for the surgery, I approached it as the last chance we were going to get to see each other and visit. That way, I actually looked forward to it and was much calmer. I could not wait to see each other again (but I could wait to have to go through all that pain and sickness after waking up). As usual, I was running late and the surgery was going to be a little bit later than projected. I remember quietly thinking to myself and telling Skip I would be a little delayed.
It was not long when it was time to wheel me off. I do not remember much about it. They must start to administer calming drugs or anesthesia before you get to the OR. I just remember I think a green wall in a hallway with dive photos that I was really excited about. Then I was in the OR and noticed it looked better - the lights were not painted bright orange. After that, I was out until they woke me up in recovery.
Are you wondering if I remember being out or seeing my friend? No, not at all. It was like when you go to get your wisdom teeth taken out. You just get to sleep and then you are being woke up. It was not that pleasant the first time.
Anyhow, I imagine I am not meant to remember because like a good movie or book you do not want to end, I may have not wanted to end my visit or being on the other side. I was meant to come back and this is how it is. For the time, my world is here.
The Day/Night Before
pictured - mom, dad, Harley and I at "The Spot" sports bar in Scappoose
Bottom photo - me in front of the Hammond beach house in Pacific City on the Oregon coast
The day before surgery was gorgeous at the beach and we were reluctant to leave! However, our time and purpose there had come to a close. It was time go back to Portland to face reality. We were very fortunate and blessed. It was a fantastic refreshing weekend at the beach with beautiful fall weather. We packed our things, cleaned the house, said our goodbyes and headed to my parents new home in Scappoose just outside of Portland.
When we arrived, Harley, my mom, my parent's german shorthair dog Hunter, and I went for a long walk exploring their neighborhood and the ridge overlooking the valley where they live. Just as we had finished the walk, my dad arrived home from work. So we all went into town for some dinner.
In the small town none of us knew yet, there did not seem to be many options but I found exactly what I needed and was looking for. This time around, I wanted to go for something simple, light, and not too spicy which would give me acid reflux up until the surgery. I thought about this for many months before surgery and determined the best thing to probably eat beforehand would be chicken and mashed potatoes.
Down the road we traveled we found the choice of two local restaurants. The one we chose was a sports bar called "The Spot" - It was pretty cool but truthfully I was worried that it might be a strip club at first due to the peculiar sign outside and the name. ;-) It was all good however, and we were able to have a very nice intimate dinner with my folks (not overly crowded where we had to wait and a homier feel to it).
The restaurant had the perfect menu choice for me available in a smaller half order (what is sometimes referred to as "ala cart"). The meal consisted of chicken breast brushed with Jack Daniel's BBQ sauce, mashed potatoes, steamed brocoli (some of the best I have ever had), and a small salad. It was like they knew I was coming!
For most of the day, I had kept it light and consumed mostly liquid things. Before my last surgery, I foolishly gorged myself at dinner the night before leaving me with the feeling of a heavy rock in my stomach and a continual acid reflux of spicy thai curry all night long. This was a horrible mistake not only because I could not drink anything and kept burbing up curry before the surgery, but also because it was terribly awful to throw it up after the surgery.
Knowing that it was most likely that I would get sick again after the surgery, I tried not to overeat and to keep to milder foods (LOL not to eat zingy curry at a place called the "Typhoon" - LOL). I contemplated what foods would be the the easiest to throw up - liquids and things liked mashed potatoes. Sounds strange I know, but it is quite an important consideration in order to make the surgery experience as tolerable as possible.
After dinner we went home and I went to bed at a reasonable time to get more sleep before the surgery this time. Following my 2007 surgery, I could not sleep for a month due to the steroids and finally had to beg for a prescription sleeping pill (Ambien). Therefore, I wanted to be as rested as possible before this surgery in anticipation that I may not get sleep for awhile.
Thursday, November 19, 2009
Finding Peace....... at the beach
After months of physically training, living life to the fullest, and getting as much done around the home as possible the weeks prior, it was time to mentally prepare for the surgery. I find no better place to do this than the beach on the Oregon coast where I have been visiting since 2003.
My sister's boyfriend's parents have a home right on the beach which they have graciously opened to us for us to stay at before both my surgeries as well as getaways over the past 3 years. We have been many places in the US as well as the world and this ties with Sedona, Arizona as my favorite place of relaxation and regrouping.
I cannot say either is better because they are completely different environments each with their own special uniqueness. I will say though that the sea just really is in my bones and hypnotically puts me at peace. It is the same effect portrayed by the character Kevin Costner plays in "Message in a Bottle", Diane Keaton in "As Good As it Gets", and most especially the characters in the movie "Nights in Rodante". The sea is my love and it is there that we both can relax, reflect, talk, and regroup. Something about the ocean and shore has that kind of power. Thus, it is the perfect place for us to be before something so emotionally shaking and potentially life altering.
Before my first surgery, I think we felt a deep sadness and fear. There is of course always a little sadness and fear, but while we were at the beach this time we focused on forging ahead and keeping it productive. Being at the beach was our opportunity to get in the "right" frame of mind to endure what lie ahead. For me this is especially important because I really believe that attitude IS everything. The doctors and God can only do so much but I really gotta put in some effort too. I won't lie and I do not mean to scare those of you who have not gone through it but it is tough going through a surgery emotionally and physically. You gotta have a place of peace in your mind to retreat when it gets difficult and a positive will.
On the first afternoon at the beach, I took a run alone out of town. I was not really sure where I was going, how far, or how long I would be gone for. I just went out and ran with no watch and nor set distance contricting my mind to mileage or time. It was beautiful to be so free! I just started running, over a bridge to a slough, ran to town, ran out of town, ran over another bridge crossing a different part of the slough, ran through the fishing village, and found myself running down a country road where I had never been. I pondered where I would go and how far I would run down this road. With the direction I was heading, it most likely would eventually meet the beach again. So I continued running until the road came to a T at a sandy cliff overlooking the ocean and dotted with scraggly bushes and trees.
I scrambled down a rocky sandy gully trying to find a way down to the beach. When I reached the bottom it stretched out to a sandy embankment which seemed too high and too ruggedly dangerous for me to climb down in order to reach the sea. So I sat on the cliff admiring the ocean waves and the fluffy clouds overhead as a gentle breeze brushed past my hair and gently caressed my arms. The warm sun enveloped around me and I felt surrounded by love instead of impending doom. The feeling was exactly what I had been in search of. I did not want to leave. I wanted to capture the feeling, bottle it up, and take it with me so I could unleash it whenever fear, anxiety, sadness, or anger appeared.
After a long while of savoring as much of the moment as possible, I was getting a little chilled which was my message and reminder that it was time to go. Happily I stood up filled with satisfaction and hope. I felt I had achieved and found that calming place I had been seeking. I crawled back up the hill to the T in the road. The sign along the road heading south down the coast read 3 miles to Pacific City. To continue my exploration, I chose to head down this new route.
Shortly after the sign I came across a cross walk leading into a forested area along the shore. Curious if it led down to the beach, I chose to follow the pine needle path. Sure enough it led to the shore dotted with black lava rock and sandstone that I went to investigate. Then I ran 3 miles along the spansive stretch of beach until I met cape Kiwanda and the giant sand dune our traditionally climb.
This time however, I trudged gradually up the back side and then rested at the top to stretch out and then sit and admire the view. For a time, I had the whole dune completely to myself and was the dominant figure atop the huge mound. Eventually a family and their dog and 2 teens joined me which was my cue that it was time to head down and back to the beach house.
More pictures from the beach......Here.
THANK YOU CHRISTIE AND DAVE FOR PROVIDING SUCH A MARVELOUS RETREAT FOR US!
Monday, November 16, 2009
12 miles
I know I wanted to take you back and I will but I also wanted to post a quick update with photos. As you now know, I am training to walk the Seattle half marathon this month. I have had some bad muscle pain this week from steroid withdrawal and was hurting pretty badly friday night. Yet, I managed to get in some very last minute training very quickly before it gets too close to the event. I trudged through 36 miles this week in the cold, rain, and even the dark by head lamp! (probably about 4 or 5 hours). Then yesterday, my sister, who is walking the half marathon with me, and I completed our long training session of about 12 miles yesterday in the rain on the Preston-Fall City trail east of where we live. So I have covered 48 miles in 8 consecutive days. Today will be a rest day and we will probably take the dogs on a nice leisurely walk at the dog park.
Oh, and I officially registered for the marathon at the Foot Zone after our walk. Yes! So I am really going to do it! :)
To see photos of our adventure, click HERE.
P.S. - the above link should now work to view the photos. I had not finished captioning them earlier and forgot to add the link. Sorry.
Have a wonderful week!
Sunday, November 15, 2009
Well Here We Are!
Top photo - Team in Training 2006 Seattle full marathon walking team; me in blue jacket on the left, coach Brent in blue the 3rd from left; my teammate Katie who I crossed the finish with to the right of Brent; Karen, Skip's daughter to the right of Katie, Skip the very tallest in the background center of photo. and our mentor Esther on the far right yellow jacket on black garbage bag for rain/snow protection
Me, Skip, and my sister Michelle at the 2008 Big Climb for Leukemia event at the Columbia Tower in Seattle; Michelle and I did the event and Skip was there to cheer us on and support us. He was so proud!
Photo right - Skip and I in Sammamish during one of our lunch meetings a couple weeks before my first brain surgery in 2007
Photo right - Skip and I in Sammamish during one of our lunch meetings a couple weeks before my first brain surgery in 2007
Hello! Sorry I have been gone for so long or very sparse. When I returned home after the surgery I became very sick and my first night home, I paid a visit to the Emergency Room in a nearby town for rehydration and IV administration of my meds. It was a combination 0f things and partly just the body's reaction to such an invasive surgery and a substatial shift of the brainstem. It is not uncommon to experience a lot of nausea after such a surgery. I knew that and knew I had to go through it again. It is one of the reasons I worked so hard and actually "trained" to have a surgery. I had to make my body strong to endure the physical beating it was about to take and to tolerate it.
Once I was on the road to feeling better, I was hit with a continual episode of double vision making it extremely difficult to read, type, and use the computer. It was this week that it settled down and started to subside. Of course by then I had LOTS of other things to catch up on - one of which was writing out cards now that I can actually see what I am writing. I have had quite a bit of cleaning to catch up on as well and just when there was not already enough to do, I decided to start training to walk the Seattle half marathon at the end of the month.
No Joke! I am really going to walk 13.1 miles on the 29th and was given medical approval a week ago at my checkup in Portland. As of today, I have accomplished walking 36 miles this week in the cold 40s, rain, and dark by headlamp. 3 weeks ago I could not even stand getting out of bed! I have been blessed with a remarkably fast recovery and Thank God the horrible stuff passed quickly. There were times worse than when I endured chemo for cancer. My body hurt really bad tonight because I have been going through a steroid withdrawal now for over a week now. I am back on pain meds at night and 4 IB profen at a time. I have been between migranes, double vision, chills, and a terribly deep muscle and bone ache similiar to the pains from the chemo. I gotta get to bed here shortly because tomorrow my sister and I are going to attempt our long 12-13 mile walk. So I am hoping to be rested and ready by the morning.
What my dream is of doing here, is to take you back to the days before my surgery with photos and bring you right up to present. I want to share photos from my place of peace and serenity at the beach, the moments before surgery, ICU and the hospital, halloween, and the lovely fall colors Harley's mom and I enjoyed at the botanical park on our last day together when I was finally well enough to take her out for something fun before she left (she was here to help care for me and nurse me back to health - mission accomplished!).
Until then, I have to get some serious recovery sleep and hopefully complete our longest training day before the event in 2 weeks.
Was it planned for me to walk in the marathon so soon after surgery? Not at all. It was not even a thought in my mind.
So what happened?
A week before my surgery, I lost a very special friend to Leukemia. We had met while partcipants in the 2006 Team in Training program where we walked the Seattle marathon together. Right away we hit it off and quickly formed a very special bond. You see, not only were we both blood cancer survivors and the only ones on the entire team, but we also shared hearing loss and a life of uncertainty living with something incurable. We were very aware of our mortality, how short life is, and the desire to make the most of life and make it the best.
Our former coach, sent me an evite a few days after Skip's passing inviting me to join he and his wife in honoring the memory of our dear friend by walking the Seattle marathon and meeting at the finish. At first I was kind of bummed to not be able to participate. We were not even sure if I would make it through the surgery or what condition I would be in. I imagine many people undergoing the same surgery would not be considering doing something like this. Maybe that desire and grief is what I needed to get me through everything and was the motivation necessary to make an absolutely astounding recovery in record time.
Thanks Brent, for offering up the challenge, providing a positive and productive channel for our grief, and a most excellent way to remember and honor Skip! It is perfect and very meaningful! I am glad that I am able to partake in this with you.
Also to come, I will be telling you about my special friend, the wonderful lessons he taught me by just being himself, sharing photos, and revealing what else Harley and I are embarking on to which Skip is one of the inspirations.
Goodnight and enjoy the week ahead!
Once I was on the road to feeling better, I was hit with a continual episode of double vision making it extremely difficult to read, type, and use the computer. It was this week that it settled down and started to subside. Of course by then I had LOTS of other things to catch up on - one of which was writing out cards now that I can actually see what I am writing. I have had quite a bit of cleaning to catch up on as well and just when there was not already enough to do, I decided to start training to walk the Seattle half marathon at the end of the month.
No Joke! I am really going to walk 13.1 miles on the 29th and was given medical approval a week ago at my checkup in Portland. As of today, I have accomplished walking 36 miles this week in the cold 40s, rain, and dark by headlamp. 3 weeks ago I could not even stand getting out of bed! I have been blessed with a remarkably fast recovery and Thank God the horrible stuff passed quickly. There were times worse than when I endured chemo for cancer. My body hurt really bad tonight because I have been going through a steroid withdrawal now for over a week now. I am back on pain meds at night and 4 IB profen at a time. I have been between migranes, double vision, chills, and a terribly deep muscle and bone ache similiar to the pains from the chemo. I gotta get to bed here shortly because tomorrow my sister and I are going to attempt our long 12-13 mile walk. So I am hoping to be rested and ready by the morning.
What my dream is of doing here, is to take you back to the days before my surgery with photos and bring you right up to present. I want to share photos from my place of peace and serenity at the beach, the moments before surgery, ICU and the hospital, halloween, and the lovely fall colors Harley's mom and I enjoyed at the botanical park on our last day together when I was finally well enough to take her out for something fun before she left (she was here to help care for me and nurse me back to health - mission accomplished!).
Until then, I have to get some serious recovery sleep and hopefully complete our longest training day before the event in 2 weeks.
Was it planned for me to walk in the marathon so soon after surgery? Not at all. It was not even a thought in my mind.
So what happened?
A week before my surgery, I lost a very special friend to Leukemia. We had met while partcipants in the 2006 Team in Training program where we walked the Seattle marathon together. Right away we hit it off and quickly formed a very special bond. You see, not only were we both blood cancer survivors and the only ones on the entire team, but we also shared hearing loss and a life of uncertainty living with something incurable. We were very aware of our mortality, how short life is, and the desire to make the most of life and make it the best.
Our former coach, sent me an evite a few days after Skip's passing inviting me to join he and his wife in honoring the memory of our dear friend by walking the Seattle marathon and meeting at the finish. At first I was kind of bummed to not be able to participate. We were not even sure if I would make it through the surgery or what condition I would be in. I imagine many people undergoing the same surgery would not be considering doing something like this. Maybe that desire and grief is what I needed to get me through everything and was the motivation necessary to make an absolutely astounding recovery in record time.
Thanks Brent, for offering up the challenge, providing a positive and productive channel for our grief, and a most excellent way to remember and honor Skip! It is perfect and very meaningful! I am glad that I am able to partake in this with you.
Also to come, I will be telling you about my special friend, the wonderful lessons he taught me by just being himself, sharing photos, and revealing what else Harley and I are embarking on to which Skip is one of the inspirations.
Goodnight and enjoy the week ahead!
Saturday, November 07, 2009
Tuesday, November 03, 2009
Morning Sun Breaks
Saturday, halloween morning greeted us with the sun after many bleak rainy and sick days. After a 2 mile afternoon walk the day prior, I felt up to getting out and about. My mother in law Cheryl and I took a trip to the farmer's market in town where we paraded the dogs around in a little doggie halloween fun. Later, we stopped at the famous Remlinger farm for our strawberry rhubarb and berry pies.
I had decided I was well enough to go out that evening so we spent the rest of the afternoon last minute shopping for a costume for myself. We missed the corn maze but were able to take in the 1 mile walk through the haunted forest at Beaver lake friday night.
Thanks Paul and Jake for inviting us to your home so we could get out and enjoy the
festivities. The party was a hit and Harley really enjoyed being "creepy grandma".
For now I need to keep the blog posts short and just post pictures as I am having double vision problems and it is hard to see and type. This is a common side effect after a brain surgery which I am hoping passes soon. Today I also had a little bit of a steroid withdrawal as I have ended my taper. I had a bad headache concentrated around my eyes. Thus I could not read nor watch captioning on TV. I spent most of the day resting, sleeping on and off and I watched a relaxing underwater documentary (just film).
Have a nice week all and thank you for reading/following my progress.
Sunday, November 01, 2009
Pre-Halloween Hospital Fun
My family and I always like to have Halloween fun. No way is a surgery going to get us down! Last week my mom brought me a pumpkin pail full of candy and a lovely cactus blooming with orange flowers in another pumpkin tin. Among the candy were crazy wax lips we had fun playing with. Pictured is my sister Michelle and I and my mom
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