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For the past 8 years, I have “celebrated” this week, part of “Go Grey in May” Brain tumor month, by reminding myself (and you, as my trusty reader) that I had an Acoustic Neuroma.

I know you are sick of hearing that. But hopefully you have been entertained by the videos I’ve made every year. At least, they’re supposed to be entertaining…

I’ve made a video of some sort every year, and this year is no different. And yet, it’s completely different. I get to share someone else’s story with you.

Last month I met Carole through the ANA forum. I thought her story was interesting not only because of how long ago she had been diagnosed (53 years) but also because of how they diagnosed it.

Carole was diagnosed as a teenager. In the ’60s. (I’m not giving the exact year to protect her privacy.) Now for those paying attention, ANA is only 40 years old this year.

Do the math.

ANA wasn’t around for her in the ’60s. There was nowhere to get information, other than what she received from her medical providers. No internet. No National Association. Even the International AN medical conferences didn’t start until 2011. No outreach. No community.

Until we video chatted late last month, Carole had not spoken with another person who had an AN since she was a teenager. She didn’t know there were other people like her.

In the 12 years I have been involved with ANA, I have met literally HUNDREDS of people like me.

The ANA has been around for 40 years, and now that I have completed my board tenure, I promise to still care and share about the AN community, committing to making sure that information and support is easily available.

In the meantime, enjoy Carole’s story!

(if you have a story to tell, let me help you.)

One of the things that I am so glad that I did while I was in Denver was taking Zoe and Maddy to get our nails done. I remember my mom used to that with me and my sisters, and the last time we all did that together was after Nina was killed, and just before Jodi’s wedding, right before my 29th birthday.

So Zoe, Maddy and I got our nails dipped. I agreed to that because since Covid, my nails have been able to grow super long.

Probably because they’re not breaking because I’m not picking up barbells at the gym three times a week.

I digress. We got our nails done on April 9, and now it’s weeks ago, and my nails are obviously growing, and I didn’t know what I was supposed to do with them. How long can/should I keep them on? Do I spend $ to maintain them? Do they get backfilled like my previous acrylics?

Or should I take them off, giving my real nails a chance to recover, knowing that breakage for the next few months is a sure thing?

I thought about calling Maddy, but I didn’t want her to know how un-cool I am, that I didn’t know what dipped nails were, or how to take care of them.

I’ve had acrylics, I’ve had French Tips, I’ve had Gel. I’m not a heathen.

But this was a first. 

So, I did my research and thankfully found this article https://www.dipwell.co/blogs/dip-nails-for-beginners

It answered all of my questions, and let me know which questions I forgot to ask.

It would be comforting to me to know for sure that my tech sent me wash my hands BEFORE he started sticking my finger into that jar. (I honestly don’t remember, but I forget things pretty regularly. ) I will be more careful about sticking my finger into a jar that CLEARLY others have done.

Anyway, I’ll be trying the rice removal soon!!

As the days have gotten shorter, I’ve been trying VERY hard to keep from binge watching everything, while still keeping busy and productive.

I wrote a ten-minute script this past summer as an entry into a ten minute play festival. The only other restriction was that it had to take place in a bathroom with a sink, shower/tub and toilet.

It didn’t get chosen. (It’s ok. I survived.) so I turned it into a screenplay (thanks Josh) and filmed within COVID protocols between Christmas and New Year’s Day, using a Samsung Galaxy 8, and edited with FCPX.

Watch and enjoy and share. Or don’t. Whatever you do, please stay well.

https://qoatip.blogspot.com/2020/11/i-owe-you.html

I decided to share this on social media, even though it’s a personal reflection. There are folks who follow this page who might know my friend Charee. If you did know her, then you know that when Charee had your back, you could never fail. If you didn’t know her, maybe you have (or are) a friend like that. When Alzheimers came for her, her level of strength and joy was never diminished. I know her passing brought her peace.

She was one of the people who supported me emotionally from diagnosis of my acoustic neuroma, to treatment, to writing my book.

Thank you Greg Tillotson for permission to post all this.

It’s been four years since my last re-check of the remnants of Norman, and I looked forward to this day the same as I look forward to every other re-scan.

(If you’ve just joined us, ten years ago I was diagnosed with an Acoustic Neuroma, and the treatment, a retrosigmoid crainiotomy — brain surgery, if you will — resulted in hearing loss and balance issues that I still deal with, and always will. I’m not complaining, it could have been way worse.)

Except that this time was in the midst of a pandemic. I expected many things might be different, and they were. From the light-but-speedy traffic from Bellingham to Seattle that cut at least 30 minutes from our commute each way, to the pre-screened/social distanced/face mask required check in and limited seating in each waiting room, it was comfortable and low on stress.

I thought they would test us for COVD-19 (they didn’t) or that maybe they would take our temperature (nope.) As it turned out I didn’t have to wear my mask while getting the MRI because mine had a little piece of wire in it, and the techs were fine with me taking it off, and we were ready a good 30 minutes before I went into the meeting with Dr. Wonderful and his ARNP.

I’ll make this short and sweet. The residual tumor is stable, and has been since 2010. Dr. Farrohki says I am good to go.

Good. To. Go.

Unless something changes, I NEVER have to have another MRI.

NEVER, EVER.

As much as my experience with Seattle’s Virginia Mason Hospital facility and its staff was amazing and wonderful, I hope I never have to step foot into that place again as a patient.

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. 😉

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/

https://blog.joangarry.com/reasons-join-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

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?

#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.