February 10, 2010 vs. February 10, 2020

It’s been Forever…what’s New since 2010?

IT’S TEN YEARS SINCE NORMAN WAS EVICTED!!!

According to “some friends” I am only allowed to use “Brain Surgery” for ten years as an excuse for WHATEVER missteps I take. I guess my time is up. Last summer, dear reader, I reminded you that just over ten years ago, I was diagnosed with an Acoustic Neuroma. And I led on that all was well…

Full Disclosure. It is possible that I may not be fully recovered from the experience of symptoms, diagnosis and treatment.

First of all, let me start by saying I’m really fine… Well…. I think I am. In fact, sometimes I forget I had brain surgery. Then I have a New Normal knack. 😉 (in case you missed my plug for my book, that was it and this is where to get it.

But then…sometimes I’m walking, and I fall down, and I think “is this normal?”.

There was the time this past October. It was the first time my leg went weak and my ankle rolled since, well, since I fell down a flight of stairs and broke my foot at work about 6 years ago. Well, it was the second time in six months that my leg went weak. The first time was when I went for a walk after a particularly hard bodypump class at the gym. (Hard because I added extra weights to the barbell that day.)

This was the first time my ankle rolled and I fell. Well, it was the second time I fell in six months. The first time I fell, I was walking down the stairs at home. I remember I was carrying my computer bag, and missed the last step.

Hold on..that fall down the stairs was the second time I fell in six months, the first time I fell was when I was in my office and …I TRIPPED OVER MY COMPUTER BAG. I fell on soft and very cushy carpet, nothing broken, just bruised. This was, however, the first time my leg went weak. This time in October when I fell down, I thought I may have done some damage…or at least really solidified the injuries from the first two.

That Thursday morning in October, I was sprint walking from my car to the shuttle to get to the airport. It was the dark…while I was carrying my computer bag, my left leg went weak and I rolled my ankle and I went DOWN. (you see a trend here with my computer bag??)

So there I laid in the parking lot for a good long 15 seconds taking stock of feet, hands and hips, before I slowly got up, checking for shooting pains that might indicate a broken bone. There were none, so I walked (slowly, carefully and gingerly this time) to the shuttle. When I sat down on the shuttle, THAT’S when the shooting pain happened. I saw stars and might have screamed out a bit…and took deep breaths as we took the short ride to the terminal when I was able to get off the shuttle and get to my gate in time for my flight.

The flight to Atlanta was fine. Surprisingly, I was able to sit without too much discomfort. When I got to my hotel, I decided it best to google my symptoms to determine what to do, if anything. Believing it could be a torn tendon or something, I called my doctor in Washington, who said it could be a blood clot in which case she warned me against flying. (Did she miss this part that this happened ON THE WAY to the airport to get to Atlanta….) Anyway, she advised me to go to a local Urgent Care clinic.

The clinic took X-rays. I didn’t have any broken bones or a blood clot and I was safe to travel. It was recommended I do RICE treatment and I went on my way. (remember I said I’M FINE.)

When I got back to Bellingham a few days later, thanks to Amar at Everstrong Physical Therapy, and Alex from FitnessEvolution  for a month of physical therapy and exercise options, I’m feeling stronger and have less aches and pains than before I left for Atlanta.

Lest you think that I have gotten to the point where my regularity of falls are decreasing… at the beginning of January, I slipped and fell on a patch of ice. (And no, I didn’t have my computer bag on me.) Looking back, I realized I have been slipping and falling on ice, mud and sand for most of my adult life.

So I remember, not only is this is my New Normal, it’s my Forever & Always Normal.. I acknowledge that I fall.

All.

The.

Time.

Get used to it. I have. (It’s all fun and games until someone breaks a hip.) Which is why I continue to drag myself to the gym. 😉

Leave a Comment

Filed under Uncategorized

BUSY? FREE TIME ON YOUR HANDS? MAKE A DIFFERENCE!

Back in 2009 when I was diagnosed with my Acoustic Neuroma, and against the advice of one of the surgeons I consulted with, I Googled Vestibular Schwannoma. Fortunately, and inexplicably, one of the first hits was to the Acoustic Neuroma Association (ANA) website. This was where I learned I was not alone in suffering decreased hearing, balance issues and tinnitus.

This was in the early days of Social Media and Facebook, just over a handful of Facebook Groups and Pages dedicated to ANs were in existence at that time, ANA’s Facebook page didn’t go up until 2011, and now it has more than 8000 followers!

Through the ANA’s Discussion Forum, I learned I had just missed the ANA’s 2009 Chicago symposium. One of the Forum members told me that a few weeks later, ANA Canada was scheduled to hold a one day symposium, just an hour’s drive from my home. I went, and was equally overwhelmed and comforted by the community I was now part of.

The ANA’s Forum and local support group meetings were my touchstones for the months leading to surgery. I continued going to local meetings well after my treatment to support others who were diagnosed after me, as well as to stay connected to the people with whom I shared this life changing event.

A few years later, I attended the 2013 ANA symposium in Los Angeles, where I was again empowered by the number of people in attendance who were in various stages of their journey. Some had undergone treatment more than 30 years before I was diagnosed. Others had received the results of their MRI that very week. By then, I had self-published a journal of my experience of self-advocacy that led to diagnosis and the road to treatment.

One of the panels I attended consisted of a few current board members. These were people who, like me, had found support and encouragement from ANA. They spoke of giving back to ANA by being active in the AN community. Then, Board President, Jeff Barr made a general announcement, inviting those interested in joining the organization in a powerful way by serving on the Board, to contact ANA directly.

They didn’t have to ask me twice. I joined the board in April, 2014. I recently realized that I consistently forget to invite people to join me on the board.

As a Board Director, I have attended Board meetings in Dallas, Nashville, Connecticut and Atlanta, as well as the 2015 International AN Conference in Shanghai. I have been to a number of patient Education Seminars hosted at treating hospitals across the country. I have led a small local peer group and have communicated with those who are newly diagnosed by email and phone.

I didn’t need to be on the Board to do any or all of those things. Being on the Board gives me an opportunity to participate in a powerful way to honor my passion for this organization. If ANA is able to be in service to one person because I play a part as a member of the Board, it is worth everything to me.

One of my favorite things to do is to make connections. I recently created a virtual peer group of musicians who have been diagnosed with ANs. All of the things I do involve getting to know the stories of other AN patients and their families and friends. Sometimes, I even get to meet people in person!! I want to hear your stories, everything that happened, I want to know anything you would have done differently.

There is room on the Board for you. You will not regret it. Consider this your invitation.

Ahttps://www.colleendilen.com/2018/04/11/fellow-millennials-four-best-reasons-join-nonprofit-board/

Why Everyone Should Join a Nonprofit Board

https://futuredirectors.com/5-motivations-become-board-director/

https://www.thebalancesmb.com/how-to-be-on-a-nonprofit-board-without-regretting-it-2501802

Leave a Comment

Filed under Uncategorized

Ten Years Ago I Met Norman

Sometimes I lose my words. Sometimes I forget where I’m going when en route. Sometimes I think I am developing dementia, but then chalk it up to brain surgery. But that was ten years ago. I agreed to only use that as an excuse for ten years.

What if it is dementia? Alzheimer’s or not, like Robin Williams, like Phyllis Schacter’s husband, would I take their path? I don’t want to be one of those who finally dies after years battling a horrible disease that makes my purpose in life impossible by literally disintegrating my cognitive function and physical ability to manage my own basic needs, while my heart and lungs would continue to work up until the time when finally, my brain stopped communicating completely.

Years ago, my friend Charee schooled me on how to love life, and continues to inspire me to live life to the fullest. She was diagnosed with early-onset Alzheimer’s at the age of 52. Charee was in the prime of life at that time; in very good physical shape as she had been killing it at the gym for years.

When Ken and I recently went to Idaho for a family event, and since we were just across the border from Spokane, I asked Charee’s husband, Greg, if it was ok if I went to visit her in the memory care facility where she is currently living. His words were “prepare yourself.” His only charge (ask) was for me to make her smile. I tried my best.

Our visit was brief as she was just about to have (be fed) her lunch when I arrived. I looked her eye to eye and held her snarled hand in mine. I saw as the light I remembered momentarily fluttered by as I chatted at her. I like to think that she recognized me and realized who I was. I think she tried to talk, but her jaw appeared to be too heavy to move. I invited her to come with me to the gym to kick my butt. That’s the moment I’m sharing with you here.

Charee doesn’t appear to be experiencing physical pain. That is a small blessing. I don’t know if this is the life that she wants to have in this moment, but I can tell you this.

It’s not the life I would want for myself. But I won’t have a legal choice. We treat our animals better than we treat our humans. Given a choice, where would you not want to be, what would you not want to be doing the day before you leave this earth?

Leave a Comment

Filed under Uncategorized

ANAwareness 2019

#gogreyinmay brings attention to brain tumors via Brain Tumor Awareness Month Cancer or not, it seems like all the brain tumor groups and organizations are filling social media feeds with postings.

If you don’t know my story, it will be ten years ago this coming June that I first learned that I had a brain tumor. It wasn’t cancer, but it did wipe out my hearing on my left side. It was a Vestibular Schwannoma, also called an Acoustic Neuroma. Because it grows on the vestibular nerve, the typical first symptom is dizziness or vertigo. Since my tumor was removed, my right vestibular nerve has had to learn to do the job of both sides of my brain.

The Acoustic Neuroma Association has declared this week ANAwareness Week, specifically focusing on symptoms, treatment and patient stories. (I’ve been sharing some here.) I have been wondering what I can do to mark this year, since it’s coming up on my own ten year ANiversary.

Today when I was on a walk, I realized how much I was veering back and forth on the sidewalk. Even though I hadn’t had a sip of alcochol since Saturday, I’m sure I looked drunk. Tonight, I had a glass of wine and a glass of cider. As I walked towards the car, I tried to remember my walk this afternoon, and tried to figure out if I was more, less or the same level of dizziness.

I wondered if I could pass a field sobriety test. I decided to find out if I can volunteer for one. Maybe I could find a friend who could help me find out….

Any other AN warriors out there want to find out too? There are three dozen people in Bellingham THAT I KNOW OF that have been diagnosed and/or treated with this benign tumor.

Leave a Comment

Filed under Uncategorized

9 Years and Accounting

When my mom was treated for breast cancer the first time, they told her that if it didn’t return in five years, it would basically have gone into remission, and she’d be home free.

Then she fell down and almost died.

Then she got up and was living independently.

Then she was diagnosed with the return of breast cancer again just about the time I was diagnosed with my Acoustic Neuroma. I believe at that time, it was more than five years since her initial diagnosis…my sisters will have to fact check me on that…

My surgery to remove a benign vestibular schwannoma was on February 10, 2010.

Her surgery to remove her breast cancer was the following May 4. These are the two dates in 2010 I will never forget.

She almost died twice while I was there alone with her in her hospital room as she recovered from surgery. I’ve never prayed so hard in my whole life for her to not die on my watch. 21 days after her surgery, we unhooked the respirator that she said she never wanted and let her spirit quietly leave her body.

I believe my mom made a deal with God and traded her life for mine. She was not a super spiritual person, but I just knew it anyway, and there are times I feel super guilty about that. I try to keep her spirit alive in my kids, in my home. I’ve given up trying to keep it alive in my garden..I was never as good as she was with plants and dirt. I think she would have been proud of the stuff I have accomplished since May of 2010. She appears in just about everything I have written and produced since then.

It’s been 9 years since Norman the neuroma was removed..the surgeon left a sliver at my request, so that my facial nerve would not be damaged. I don’t know if there are statistics about Acoustic Neuroma regrowth like there is about cancer. In my head, (see how I did that?) I made up a ten year statistic. My next MRI isn’t until 2021.

But so far, it’s been 9 years.

Almost there.

Leave a Comment

Filed under Uncategorized

How Far Can I Go?

There’s a group on Facebook that’s been around for a few years. It was started by an Acoustic Neuroma patient who lives in New South Wales, Australia as part of an annual awareness event of the International Brain Tumor Alliance in 2007.
Suu Blundell sent out an invitation through another group of Acoustic Neuroma survivors, inviting others to create our own walk. I was one of the first dozen to sign up in the “Walk Around the World for Acoustic Neuroma Awareness” group. We checked in daily (or weekly) and reported our steps which were diligently logged in by a handful of volunteer administrators. And Suu, the spearhead of the group, acknowledged every step reported.
There were more than 150 participants who collectively and successfully amassed enough steps to make it around the world more than five times.
How many steps does it take to walk around the world once?? There are far better mathematicians in the world than I but I’ll give it a math-nerd shot. Google says the circumference of the Earth at the equator as 24,901.55 miles. As there are 5,280 feet in a mile, this equates to 131,480,184 feet. If a regular person takes a step of approximately 2 feet, then it would take a person 65,740,092 steps. That number will have lots and lots of variables
considering the number 24,901.55 is assuming that the earth is completely flat. Going up and down hills/mountains would change the amount of steps by a lot. The World Walk target of circling the Earth at the Equator equals (24,901 miles or 40,075 kms) = 52,590,912 steps!!!!!
There are days where I get between 2 and 4000 steps. Honestly, that makes me feel bad about my level of participation. I bet I’m not the only one..I see when others say “so and so walked for me” I got pushed in a wheelchair” They don’t understand that EVERY STEP COUNTS…from when/if you get out of bed until you go back to bed. I personally walked over 1000 miles, more than 2 million steps in the past year.
I jokingly once asked Suu how many steps it would take to reach the moon.
Be careful what you wish for….

This group is now open to ALL brain tumor patients and their friends and family.

Thank you Suu and all of the other administrators. I’m looking forward to the beginning of an amazing journey.

Happy New Year!

1 Comment

Filed under Uncategorized

Big Weekend in Tulsa

It’s hard to believe that I’ve been 60 years old for almost a whole year. Sunday will be the longest birthday I have ever had in my whole life that I can remember… (Don’t forget to set your clock back on the 4th…)

But even more than that, I get to go to a wedding in Tulsa the weekend of this birthday. My friend Joey, who I met thanks to us both being gifted with an acoustic neuroma, reached out to me via Facebook so many years ago when she was first diagnosed.

We became internet friends. We post on each other’s Facebook pages. I think we have mailed stuff back and forth. I’ve listened to her on the radio. One day, years after, we actually talked on the phone. We talk about diets, exercise, sign language and Deaf culture. But we have never met in person.

She got engaged to the love of her life in a very romantic and frightening weekend last year.

Joey Gets Engaged

When she wrote to me later and said “would it be weird if I invited you to my wedding?” My natural response was “Only as weird as it would be if I showed up.”

Even when I made my plane and hotel reservations, I kept texting her, “are you sure it’s ok that I come?”

So I leave tomorrow morning to go to a place I have never been, to attend the most important day of a woman I have never met.

I can’t wait to meet her and hug the stuffing out of her.

I’m guessing I’ll start crying the moment she stands in front of me.

My acoustic neuroma is the gift that keeps on giving.

Leave a Comment

Filed under Uncategorized

I’m not leaving on a jet plane…for a while

I recently finished traveling for the winter/spring. 

I have done so much traveling in 2018 already. Enough to trade in miles for a first class upgrade on one non-stop seat on a flight from Dallas to Seattle. Enough hotel points to trade them in for one free night at a Marriott hotel.

For me, that’s a lot.

This travel season lasted from April 21 to May 14. I went to Chicago to see family, Dallas for an ANA Board meeting, Yakima and Bellevue to accompany Ken on HIS work trips.  

This last trip to Baltimore, MD and Alexandria, VA was the one that everything else centered around. ANA partnered with Johns Hopkins to hold a Patient Education Meeting there. I went as a Board Member to represent ANA. AND it was ANAwareness week AND it was Mother’s Day weekend AND Caleb and Maddy live nearby in Alexandria VA, AND my cousins and aunt live in Maryland. I had a plan, and I was successful. Bonus was that we got to meet our newest grand puppy Bonnie.

The Meeting at Johns Hopkins was amazing…the speakers were so kind and took time to talk with former and current patients, as well as those who were not their patients, but simply came to listen and learn. I met people who had received treatment almost 40 years ago, and some who where diagnosed with their tumors this year.

It brought back the memory of my “first time” I was in a room of people like me, and it was heartwarming and gratifying. This is why I do what I do.

I have my next travel “season” that won’t start until September, so my suitcase is comfortably out of sight and in the basement. I know there are people who travel for a living, especially those who work for a company that is not based locally. I love traveling, and I occasionally wish I travelled for a living like some of my friends.

I guess I do travel for a living. Meaning I’d bring in as much money working from home as I do,(as little as I do.) I’d most likely make more money working OUTside my home, but I would NOT have this kind of traveling-for-fun-and-family freedom.

This is what my lilacs looked like the day before I left on my most recent trip. 

 

Lilacs are my favorite. Caleb’s first daycare had three lilac trees on the property, but one of the trees had the lightest, loveliest scent. I asked and took a small cutting from the bottom of the tree and planted it in my front yard. That was more than 20 years ago. Now, It’s huge and healthy, and produces more lovely scent that I ever thought possible. 

But the life of the lilacs are short lived every year, maybe a week or so before they start to lose color, vibrancy and scent. Every year I cut them, bring them into the house (all over the house) and bring some to friends. But this year, I wasn’t home to do that

This is what the same lilac tree looked like when i got home. 

 

The lilacs will grow again next year, and the year after that. And there will be more trips..sometimes during their bloom.

Lucky me.

😉

 

Leave a Comment

Filed under Uncategorized

8 Years

Do you remember exactly where you were 24 hours ago? A week? A month? A year? 8 years?

Let’s say it was the day you got married. Or had a baby. Or your baby got married. Or had a baby. Or someone you loved very much died.

It’s easier to remember when it’s an anniversary.

Lifecycle celebrations and anniversaries are like that. But for most of us, only parts of the days and memorable, not all the details of what you did every moment.

8 years ago from the day I wrote this (February 10) I was at Virginia Mason Hospital and Norman was getting his eviction notice. All day. And since I was pretty unconscious, I have pretty much no memory of the day. But it’s an anniversary nevertheless.

Every ANniversary (see how I did that?) I am very aware of the day. “By this time, I was doing that. By this time, they were doing that. By this time, I was in recovery…”

It’s been a pretty easy ride for me. Over the years, some stories are better, better recovery, hearing preserved, balance restored….Others not so much. I am grateful everyday.

Working on balance (thank you FitnessEvolution and CorePhysio.)

Still deaf in one ear (my left, in case you are keeping track) and recently learned that my ability to hear certain decibel levels in my right ear has improved.

And my sensitivity to loud noises is extremely protective of my “good” ear.

Nevertheless, I know at some point, I may be one of those people who loses functional hearing. I’ve been trying to recover my receptive signing “skills.” I write it that was because I’m not sure if they were ever good. In a crowded, noisy place, I am lost. And what’s the point of being able to sign (or at least finger spell) if I can’t understand it from someone else?

So, for the third time (third time’s a charm, right?) I’m returning to studying ASL and trying to incorporate it into my life. I’ll do this on the cheap, and grab free tutorials off the internet. If I can search for anything DIY on YouTube, why not??

It would make things SO MUCH EASIER for me, (and it’s all about me, right?) if more people knew sign language. In my dream world……
If at parties, in crowded rooms meetings. the person trying to tell me a story or ask a question could sign a little bit. IT’S SO HARD TO HEAR ACROSS A LONG TABLE.

But OMG you can communicate THROUGH GLASS with ASL.

There are a few YouTube channels that teach ASL vocabulary, (Bill Vicars, Ashley Clark Fry, ASL That) and I’m now subscribed to them all, and finding new ones every day.

I’ll let you know how it’s going.

My favorite new-to-me sign is “Flattery.” Look it up.

 

 

So today, I share with you a few links to some beginner lessons.

 

Super beginner

#2

#3

verbs

Valentine’s Day

ASL grammar lesson

Leave a Comment

Filed under Uncategorized

Lucky Seven

Today, February 10, is the ANniversary of my AN Surgery.

It’s been seven years.

It feels like it was a million years ago.

It feels like it was just yesterday.

I looked it up….

Seven is mathematically both a happy AND a lucky number.

The number 7 (七, Pinyin: qī (Mandarin) “chut” (Cantonese) symbolizes “togetherness”. It is a lucky number for relationships. It is also recognized as the luckiest number in the West, and is one of the rare numbers that is great in both Chinese and many Western cultures. It is a lucky number in Chinese culture, because it sounds alike to the Chinese word 起 (Pinyin: qǐ) in Mandarin meaning arise, and also 气 (Pinyin: qì) meaning life essence.

There are Seven days in the week

There are seven colors in the rainbow. A beautiful huge rainbow followed six days of freezing temperatures, snow and icy rain

There are seven wonders of the world.

7-11 is where one of my favorite brothers-in-law works.

I grew up being a huge fan of 7-up artwork by Peter Max, who I ALMOST met in Florida this past fall.

There are seven fundamental types of catastrophes. Two of my favorites are:

1. The butterfly effect is the concept that small causes can have large effects.

2. A snowball effect is a process that starts from an initial state of small significance and builds upon itself, becoming larger (graver, more serious), and also perhaps potentially dangerous or disastrous (a vicious circle, a “spiral of decline”), though it might be beneficial instead (a virtuous circle). The common analogy is with the rolling of a snowball down a snow-covered hillside. As it rolls the ball will pick up more snow, gaining more mass and surface area, and picking up even more snow and momentum as it rolls along.

Both of these a strong reminders of the ripples that are the result of my surgery. I am a lucky woman.

If you are a number nerd like me, here’s a lot more stuff on 7s: https://en.wikipedia.org/wiki/7_(number)

Leave a Comment

Filed under Uncategorized