Adapting to my new life

It has been awhile since I have updated my blog. Last weekend I just passed another milestone. I accomplished two days of skiing with Oregon Adaptive Sports (OAS) at Mt. Bachelor. It was my first time skiing since being diagnosed with a brain tumor and surgery. It was like skiing on top of the world! And yes, the view was spectacular!

This is a picture of my instructor skiing backwards in-front of me as a visual target.

This is a picture of what it looks like from a distance. My instructor in front of me. Me in the middle. And two blockers / assistants skiing to the side and behind me to make sure no one skied in front of my path down the mountain. There were times I felt like the Queen of England skiing with my posse of bodyguards around me.

This is me with my OAS instructor, Dan, from the first day.

By the next day, I was skiing "blue" intermediate runs and even made it over to the Outback chairlift to ski the run called Downunder with the continue assistance of Oregon Adaptive Sports instructor, Melody, and 2 blockers.

It was such a thrilling time and I am anxious to go back again soon for more time with Oregon Adaptive Sports they made it so easy and so much fun! 

Keep peddling, keep going forward into the New Year

The new year is upon us and I want to reflect on the many things for which I am thankful.
  
2013 has been a good year for me. I was bless to find an exceptionally skilled surgeon that was able to remove the tumor from my brain last January 10, to have a wonderful supportive husband, and to have many supportive friends during my recovery.  I am thankful for my improving health, which is so much better than a year ago.  While I continue to have some challenges, I am slowly getting my life back in order.  

My eyes are learning to adapt to my work at the University of Oregon. I continue to work part time as my brain continues to heal and I learn adaptive life skills. Thank goodness for my special prism glasses that allow me to see single vision directly in front of me.  I continue to have super sensitive hearing, similar to Superman. I have been tested and the audiologist confirmed I hear sounds that most people do not hear. Due to my auditory sensitivity, I wear custom fitted ear plugs in public. I can still hear everything, but sounds are a bit duller and more comfortable for me to handle. 

My latest milestone is that I have recently started to ride a bicycle. My doctors suggested if I want to ski this year, I should get use to visually handling motion by riding a bicycle. That is because my eyes and brain still have trouble processing motion and spotting objects quickly while I am in motion. The experience of processing peripheral motion on a bike will be similar to what I will need to visually process on the ski slope. I had my first bike riding adventure a couple weeks ago and it was much like when a 5-year-old child first learns to ride a bike. I started out wobbly, but after a couple of pumps of the peddles I started riding in a straight line. Now, I am up to about 4-5 blocks.  Afterwards, I am over stimulated and worn out, but it is very exciting to be back on a bicycle again. 

The next year is full of promise and of goals yet to achieve, but with God’s help, and the loving support of my husband and friends, anything is possible.

Eye spy with my little eye...

Each week brings hope and challenges as I continue on my road to recovery. 

Last week, I was able to increase my time at work up to 5 hours a day. I am trying to slowly increase my work hours without jeopardizing my recovery.  I feel good that I was able to achieve this goal but I am very exhausted after 5 hours and continue to take long naps each afternoon. Between working part time and doing my physical and eye therapy there is not a lot of spare time in my day. I am behind on emails, I will try to do better on my blog as that is easier than doing individual emails for now. 

I am gaining strength each week and learning to adapt to my new lifestyle. I miss being out and about with friends and events. I am still challenged in public with noise and motion.  I have attempted it a few times, and I tend to pay the price by getting extremely exhausted, dizzy, nausea and loud ringing of the ears. This week I am to get my new custom earplugs. (Goodbye ugly neon orange and green foam earplugs!) I am very excited as this should help some with my over-stimulation in public and events.

I had my 2 month follow up appointment with my neurologist last week and I have some good news. He said I am continuing to heal since my last appointment. My eyes are tracking movement better and my pupils are constricting when focusing on his finger as he moved it close to my eyes and away. It appears my eyes are still healing, and my new prism glasses and visual therapy are working!

I continue to push the envelope of what I can do, whenever possible. I have signed up for Oregon Adaptive Sports to downhill ski with their visually disable program as I have a limited field of vision and lack depth perception. Watch out Bunny Hill, here I come! This should prove to be very exciting! I got my Mt. Bachelor 4 Pack Pass this week and ready to go as soon as the snow arrives!

Thank you all for your support, I appreciate you all being on my journey with me!

Hi ho hi ho its off to work I go!

It has been two months since my last my last entry and 9 months since my brain surgery.

Since my last post I have continued to make gradually improvements.  I am getting used to my prism glasses. At my last eye appointment we learned that my eyes can maintain single vision in a 8" x 10" area directly in front of me and a little bit below and to the right of me. Outside that area my vision remains a bit jumbled and doubled. The good news is that my sweet spot for vision is perfect for computer work. I continue to work with a Vision Therapist to try to further improve my vision and to learn strategies to navigate more independently.

A month ago I returned to work 4 hours per day at the Center for Teaching and Learning / University of Oregon. It is good to be back at work! My co-workers have been very supportive and helpful with my re-entry. My office is conducive to my recovery because it allows me to work in a quiet and calm setting. With time I will be increasing my work hours. But for now, I come home from work and head straight to bed for a long power nap in the afternoon. After my nap I am able to make dinner and work on my balance and vision therapies. Doing my therapies daily is my other regular job.

I do not drive but have become very adept at riding the local city bus. I continue to have difficulties being in the public or in large groups, because my eyes are have difficulty tracking motion and I am sensitive to loud and ambient noises. Yes, I still have supersonic hearing.  Last week I heard Rod’s cell phone vibrate upstairs in his office while I was downstairs napping. To help address my over-stimulation from sounds I hear, I am having special custom earplugs made. I will receive them in a couple weeks.

I am often asked how long will it take for you to get back to normal, or if my hearing and visual limitations are permanent?  Well, if I had a magic crystal ball I could answer that question. Unfortunately, we really don’t know how much more recovery to expect and when. My recovery is slow, but it is happening!  Compared to where I was last year at this time -- when I was in in extreme pain, using a cane and having rapidly deteriorating health -- my current health condition is a cakewalk. I firmly believe in neuroplasticity, which involves the brain's ability to reorganize itself by forming new neural connections throughout life. Rod and I continue to see improvements and we remain optimistic about my future. We also accept that I might have some long-term limitations in life but that will present new life experiences for me.

Getting Better, But Not Yet Ready For Prime Time

Last month was a busy month for me due to a family emergency, so I was unable to do a blog update. Now things are getting back into a normal routine.  I have been progressing nicely in the past couple months, but I still have some deficits.  My eyes are still having some issues and I can get over stimulated easily.

It has been six months since my brain surgery. Day by day I don't notice the difference, however when I look back at how I was 6-7 months ago, I am amazed at my progress.

Since the last blog, I am no longer using a cane during the daytime. I still use a cane sometimes in the evenings, or times I am over stimulated by noise or excess ambient movement, such as in large crowds.

My balance has much improve and I am able to hike with Rod's help. We have done a couple hikes over 6 miles and I am hiking the Ridgeline trail behind our house more often. It is so great to be active again!

I am getting out in the public some and going into some stores. Loud voices, ambient noise and/or a lot of movement can cause me to get over stimulated.  I wear earplugs and sunglasses in public to protect me from being over stimulated.

Some friends look at me and think I have fully recovered. However, I cannot see and hear things the way others perceive things. Sounds are intensified and I have troubles visually tracking movement. Hence if you see me in public it is best to approach me front-on slowly and not to the side so I can recognize you. Perhaps say “Hi” first and your name as my eyes move upwards slowly and I don’t often recognize friends immediately. If you see me in public, please come by and say “Hi.”

I am neither driving nor working at this time. I am not sure when I will drive again. I have gotten more comfortable taking the city bus around town and Rod makes an effort to chauffeur me whenever possible. I am working hard on my physical therapy daily; presently it is my full time job. Along with my intense eye therapy, and I have new prism eyeglasses for distance and computer work that seems to be helping. I plan to return to work in September.   

Not yet ready for prime time, but getting there!

The journey is more fun with company.

It has now been 4 months since my brain surgery. 

Recently I was talking with a friend, we were discussing the possibility that things in life sometimes happen for a reason. Sure, the recovery from brain surgery has not been easy but the journey with friends and family has been comforting. Every cloud has a silver lining and my friendships and support by loved ones has been 24 karat lined!

I continue to get stronger each week. I enjoy my walks around the neighborhood and around Eugene. The last few weeks with the wonderful weather, I found myself venturing out in our yard puttering about pulling weeds and cutting back the ferns. With my eyesight some ferns got more of a haircut than I had planned!

My vision is about the same, so I decided to move forward in improving my vision. I tried some temporary prism lens for my vision but they were not exactly right. I recently started to see a new eye specialist that is working on my vision. She believes I need three pairs of prism glasses for distance, computer and reading. After I get the new prism glasses, I will be starting eye therapy.

My balance is better per my physical therapist. I still use a cane or walking poles for getting around in public and going on walks. I have been using a Wii station daily and doing balance and yoga to increase my coordination. I am hoping my ski score on the Wii will equal my ability on the ski slopes some day!

My days are never dull as they are full of physical therapy exercises in the morning and afternoon. I treat my physical therapy like a full time job and we continue to feel optimistic about my recovery. I am still not able to get out into big crowds as the noise levels and motion are visually difficult for my brain to process as I get over stimulated, causing nausea and then exhaustion. I do miss getting out and about with my friends but each week I am doing more and getting stronger.

April showers bring May flowers

As my fellow Oregonians know we have had quite the downpour of rain the past few days. That is OK as we needed the rain for the flower show that is going on this spring.

Sometimes, you have to be patient when life gives you downpours but you know in the long run the best is yet to come. This is true with my recovery. 

I am working hard daily doing physical therapy exercises, taking long walks, going to physical therapy appointments to continue working on my eyes and balance, and acupuncture for post surgery issues and healing the eyes. All the work is yielding progress, slow but noticeable changes are occurring weekly.

My recent MRI scan report was good. The surgeon, Dr. Shihinian, said all was healing nicely and no major issues. There is still some slight swelling at the base of the brain due to the surgery but no concerns as it will go down in time.

Rod continues to be  my constant helper, patiently encouraging me to try new things, and my main supporter when my progress seems slow. He has a great attitude and I know with him at my side, that I will indeed fully recover. 

We are optimistic next year Rod will be able to return to the ski slopes more often.  As he sacrificed his ski season to take care of me and for that, I will be forever grateful! Hopefully, I will be able to join him but I might have to start out slow on the bunny hill. Watch out below, here I come!

Next stop Bakery and Recovery

As of two weeks ago, I am now doing all of the cooking.  Recently I made yummy Eggplant Parmesan and my first pie post surgery.  Personally, I think making a pie each week would be good therapy, but probably not good for my waistline.

New milestone, since I am not driving, I explored taking the LTD city bus about 2 miles to a local bakery in my neighborhood by myself.  It was a challenge to see my bus stop, but I got close enough and walked the rest of the distance.  Of course I had to reward myself for completing this task with a delicious gluten free orange cranberry muffin!  I am not able to use the bus to go across town yet.  I just tried it out in a familiar location near my home.  It felt good to get out and explore a little on my own.

 

I had my first post surgery MRI last Tuesday. The MRI is to check that all is healing properly.  I will learn the results during my consultation with Dr. Shahinian, my brain surgeon, on Thursday.  We are optimistic that all is healing well for this stage of recovery.  I will need to have yearly brain MRIs for the next five years as a precaution.

I continue to walk as much as possible and regularly go to physical therapy. I was asked what are they doing for me PT-wise since I can walk? The PT is mainly for my eyes and balance.  I still have double vision, depth perception deficits and vertigo.  My physical therapist is teaching me how to move my eyes from object to object smoothly and to re-learn how to focus my eyes again.  My eyes are a lot like a newborn baby's eyes.  I need to re-learn how to move my eyes where I want them to go and how not to get nausea or loose my balance in the process.  I am making progress and learning tricks to cope with every day living, but the deficits with my eyes are taking a while to improve. My surgeon explained that the eye symptoms are sometimes the last to improve.  We are optimistic that I will have a full recovery, as small progress is being noted week to week.

Each day is a blessing and I am so fortunate to have had my surgery. I can't imagine what my life would have been like without the surgery.

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Becki is Healing!

I have been busy healing since my last post.  Or at least that is what my neurologist proclaimed this week, "Good news! You are healing!"

I cannot see the progress daily, but each week I am noticing that I can do a little more.  I am still seeing double with blurriness and have sensitivity to light, but I am starting to wear my sunglasses less indoors each week.  Some have asked, what do your eyes see? Here is an example of what my vision is like:

Another question I'm asked, when will you get your vision restored?  I wish I knew.  Dr. Shihinian told me that everyone heals at a different rate...some in a few weeks and others in a few months. The good news is that I can tell my vision is improving each week.  I remain optimistic that my vision will eventually be restored ... with patience … all in due time.

As I have gotten stronger, my physical therapist has increased the amount of physical therapy I receive.  I receive therapy for my eyes as well as for my balance.  I cannot go upstairs yet without assistance, but hopefully in a week or two that will change.  Our house has two stories and I miss having full access to the house.  I am still walking daily and am starting to cook more.

Recently, I started venturing out into the public. I went to a small quiet church service and had pizza at small intimate pizza parlor with Rod (sunglasses and ear plugs still required).

Each day I count my blessings.  I have no more migraines and I am getting stronger all the time.  Rod continues to be my constant companion and has provided me strength and encouragement throughout my journey.  I owe so much of my  recovery to my wonderful husband.

This Week's Mission was Transition

It has been 5 weeks since Becki's surgery and recovery continues to go well. This was a transition week as Rod returned to work.

Becki is continuing to walk daily about 3 miles, now with a walking pole. She has had to take a break from walking hills as they were aggravating her vertigo.

As Rod returns to the workforce, Becki is trying her hand in the kitchen. She started this off by making a chocolate soufflé. Rod still does a lot of the meal preparation, but Becki is starting to help out as long as it does not involve using knives. We don't want to have a Dan Akyord/Julia Childs moment http://www.dailymotion.com/video/x7tnc9_the-french-chef_fun#.USAqlBG9KK2

With Rod going back to work, he has not been as available to Becki to do all the things around the house and to take her to all of her medical appointments. On the upswing, Becki has very much enjoyed seeing friends this week as they took her to medical appointments and helped her around the house. It was the highlights of her week to see friends.

Clip Clip Here, Clip Clip There

Week four - I am writing this blog entry, which is my first entry since my surgery. I am using "Dragon Speak", dictation software and "text to speak" feature on the iPad to create this blog entry.

This week's milestones consist of the following three things:

1. My lifting limitation has been increased to 15lbs, so my cat Simon is now in the range (pretty much) to be lifted for hugs.

2. Rod and I have done daily walks of about 3 miles, with a couple of days of about 4 miles that included a hill. (At times I am able to walk without a cane on the smooth straight stretches or when holding Rod's hand for stability. And sometimes I just hold Rod's hand because...)

3. Wednesday I had my first outing (non-medical related) since my surgery. I got my first hair cut in 6 months - clip clip here, clip clip there. I felt like Dorothy in the Wizard of Oz.

www.youtube.com/watch?v=8nlD_BQnAFw

I was very excited about getting my hair done by Christina at Lush after so long a wait. Whew, it felt wonderful to have my hair styled and tidied up!

I should explain that I halted all hair appointments back when I first learned I had a brain tumor and might be having surgery. I did so because I thought I would be losing some or all of my hair when I had surgery. I learned only a few weeks before the surgery that only a small credit card size patch near the base of my neck would be shaved and the top of my hair would cover the surgery point of entry. If you saw me you would not be able to tell from my hair that I had brain surgery.

This week was my second PT baseline assessment for vision and balance deficits. The testing aggravated my visual senses, causing me to relapse for a couple of days. This was a reminder that my recovery is not a straight line. It was advised that I should not go out in public for another month due to my difficulty in handling sensory stimuli.

Thank you to all of you for the words of encouragement during my journey.

Good Bye to the Overstuffed Chair

Hurray, Becki has completed three weeks of recovery! This is important because for the first three weeks she has had to deal with various restrictions, including always sleeping upright in an overstuffed chair to minimize brain swelling. Starting Friday she began sleeping in a bed. She had been looking forward to that day for some time! She also had her 3 week review with the Skull Base Institute and had her 5 pound restriction upped to 10 pounds. With her lifting restrictions she has not been able to pick up her cats, and it still might be a couple more weeks until she can pick up Simon, not that he has a weight issue!

Becki's energy and strength continues to increase. On Wednesday she was able to shower and dress herself for the first time. She is also able to tolerate longer walks, in fact she is up to 2 miles on sidewalks daily with small inclines. However, she still continues to enjoy her regular cat and bunny slipper naps. Overall, her recovery is progressing well.

Becki's tumor was located in a very sensitive area of the brain. Her recovery's biggest challenges are the stabilization of her various senses that were impacted by the tumor and the effects of the surgery. She continues to experience significant sensitivity to light, with double vision and blurriness that fluctuates in intensity. She has hyper-sensitivity to smell, taste and to sound. She needs to wear ear plugs to tolerate basic household sounds. She also experiences some difficulties with swallowing which requires that she focus on swallowing when eating. We anticipate that these symptoms will eventually improve during her recovery. Due to Becki's heightened senses, she is not able to go out into the public yet. She does miss her friends and is able to talk briefly by phone. Becki's recovery is coming along but she has a ways to go for a full recovery. She enjoys the encouraging words by her friends during her recovery and looks forward to eventually seeing them in person.

Recovery - Week Two

The intense migraine headaches Becki had every day for over four months prior to surgery are gone, as is the severe nerve pain she was experiencing in her left arm. And, the head pain from the surgery is greatly improved. However, as previously noted, recovery from brain surgery does not involve steady forward progress. Becki has had good days and days that have not been as good. It is like a dance of two steps forward and one step back. The good news is that over time Becki is making forward progress.

Highlights this week include Becki getting outside for brief walks and having a very slight improvement in her sensitivity to light, but she does continue to require shades. She also continues to experience double vision and blurriness, but her doctor advised her this week that her eyes were tracking together so she does not need an eye patch - so no dressing like a pirate ... Arrrrr! Becki's doctor said that only time will tell what improvements she will have with her vision deficits and that the maximum improvement could take quite some time. The important thing to watch for with nerve damage is that Becki continue to show gradual improvement. Becki remains positive that she will eventually have an excellent recovery. In the meantime she continues taking lots of cat naps and Rod continues to provide excellent care.

Thank you again for everyone's support and encouragement. It means so much to Becki. Please note that she continues to be unable to respond to emails because of her vision deficits.

Cat naps

During Becki's recovery she has been taking a lot of naps. It was recommended that she take several naps a day to help with her recovery. Becki is following doctor's orders. In fact, we've noticed she has taken a couple cat naps at one time or was it a couple of cats with naps at one time?

For those of you who haven't met Becki and Rod's cats, Zoenobia is sitting in front and Simon is laying down in the back.

Home Sweet Home

We are now home and getting settled into our new routine. Becki's new routine is focused on getting healthier and stronger one day at a time. Rod's new routine is taking care of Becki's every need.  We are slowly getting acclimated back to Oregon's weather after having had endless days of sunshine in California.

 

The surgery was a success and it was great to say goodbye to the bubble. Since the surgery, Becki's eyes have been dilated and she has sensitivity to light. As her future remains bright, she continues to wear shades. Becki also experiences some double vision and blurriness but all her eye symptoms are expected to gradually improve with time. In the mean time, Becki has great difficulty reading emails or responding to them.

The surgeon told us that having brain surgery is a bit like being hit by a Mack truck. Becki's body is busy trying to heal from that event. She is recovering as expected at this time. We are very optimistic for an excellent recovery, but it will take some time. Becki may not be on the ski slopes this year, but she is already thinking ahead to next ski season.

Thank you to everyone who offered encouragement and support to us while we were in California. It felt like you were along with us on our journey.  We would especially like to thank Uncle Chuck and Nancy for all they did for us during our time in California.  

Up, up and away

We are sending Becki and Rod back from LA to Eugene-- here's a shot of Becki at their boarding gate VIP Lounge at LAX. Takeoff 1:00 pm.

I see Becki is holding up six fingers which could mean two things that I can think of --- either she's excited because it's only six more hours til her next dose of pain meds or six hours 'til she gets home.

Whether she needed it or not, their plan was for Becki to wear the ice mask on her head the whole way so they would be catered to- and if that didn't work they would say "brain surgery" loudly in conversation.

We are so blessed, Chuck and I, to have been part of this successful story -- and I will be turning in my chief blogger badge now for a seat in the audience with you ;)

Xox and love to all and thanks for ur great comments and support of Becki and Rod.

Nancy

Cleared for Take-off!

Doctor gave Becki the thumbs up. The pathology report was all clear -- it was benign. This is fabulous, fabulous news-- and Becki and Rod will be headed to LAX airport together in a limo at 9:30 am tomorrow-- Wednesday.

Will add more "color" after dinner -- but this is short, sweet and the news we were all waiting for !

Xox, Nancy

Dancing with the star!

Becki reports a much better day today,

1. Got in several cat naps as advised by Dr. Caryn ..

2. Nibbled on chocolate to help with her recovery.

3. Completed a few short walks down the hallway with a walker.

4. Now this is Kleenex material- Becki did a few dance steps with Rod as part of her physical therapy, which was the highlight of her day.

Becki will be seeing her surgeon tomorrow to hopefully get cleared to fly home on Wednesday.

We will keep you posted... She LOVED UR Comments ! Keep 'em coming!

Until tomorrow , nancy

3 does not equal 10

Becki reports that as expected, recovery is not a straight line, and day three was not a top ten day. According to the doctor, at day three the brain is having its worst day of swelling with blood rushing to the brain to work on healing.

She has been resting all day today and sitting up to help reduce the swelling--and the pain meds are doing their job. The Doctor is monitoring her condition and is in touch with Rod for ANY concerns or questions about what is normal.

Good news-- this part of the process is par for the course-- and if anyone is going to master the course, it's Becki -- a role model for us all !

And Bravo to Rod for Oscar winning caregiving!

We are ALL optimistic that tomorrow will be a better day.

Words of encouragement from her friends and family to the blog comment area make her feel really good. !!!!

Tune in tomorrow for more news from the Bubble Busting front.... Nancy