Category Archives: Lessons Learned

SURVIVAL of Holiday Festivities – The Acoustic Neuroma World

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Hi everybody!  I’m here, just haven’t had anything to share for awhile.  However, that changed with the season. For some, this will be the first holiday since a craniotomy or radiation. Or perhaps the first season of watch and wait after finally learning the source of symptoms. I thought I’d share my personal tips for survival.

Holidays are a challenge for those of us who have: (check those that apply)

– Head hurts (no further explanation needed)
– Tinnitus (loud, not just ringing, but buzzing, radio station sounds, ringing that gets worse in noisy settings)
– Single-sided deafness (doesn’t just cut hearing in half but confuses brain signals which amplifies background and side noises while ignoring voices that are right in front)
– Full or partial facial paralysis (making eye dry and/or self-conscious about smiling or eating)

PRIOR to Festivities, if possible:

– Take a nap
– Pack eye drops & tissue
– Pack as much humor as you can
– Think about packing one earplug
– Pack pain medication

DURING – Once you are “there”, wherever that might be, consider the following:

– Be calm. No need to scurry or move. Keep your head calm.
– Find the most comfortable chair (one high enough to have a headrest is heaven).
– Sit as far from speakers as possible.
– If possible set with your deaf ear toward a wall so you won’t have to strain your neck to hear (which may make your head worse) — and you won’t inadvertently miss someone approaching you and talking with you being aware. “What?” being our too familiar response to that jolt of awareness. (ears being on the side of the head doesn’t help single sided deafness, but that’s another discussion)
– Smile with your eyes. Sparkly eyes pull the viewers eye away from the mouth.
– Don’t stress about not hearing. Seriously, don’t get stressed.
– People watch – really study people around the room. It’s fun to watch mannerisms. I saw a play in a foreign language once so hearing didn’t matter – I got the story through physical movements of the cast)
– Focus on what you have — not what you’ve lost. Perspective is a good thing. Loss is real, but only living can bring joy.
– Once in a while close your eyes. Inhale, exhale and identify holiday smells.
– Focus your hearing on laughter and joy.
– Take mental snapshots. (Maybe phone pics too) but the idea of a deliberate mental snapshot is more likely to be saved in your memory for later retrieval (see below for your first opportunity)
– Laugh a bit.
– Take a walk or step outside for some air and silence (depending on weather where you are – here in Michigan you may freeze in place)
– Drink a lot – of water (alcohol at a minimum as you know your ability to handle, but it usually doesn’t help any of our issues)

AFTER – Once you’ve survived and gotten through a night of loud noises in your head, ponder these ideas if you can:

– Plan for morning after hangover and if possible stay in bed.
– Accept this opportunity to be still and rest
– Close your eyes and think past head pain to go through your mental snapshots. (see above). Remember the funny, the adorable, the cringe worthy. . .
– Go for a walk. Sometimes I have to start really slow, but the rhythm of walking seems to be calming to the head and the relative quietness of outdoors (if possible) are calming.
– Drink a lot of water.

I’m sure many warriors have other ideas for surviving, but here are a few of mine.

Happy Holidays!

Disability and the Stages of Grief

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OLYMPUS DIGITAL CAMERA

stones in the sand

I’ve talked to several people who have gone from an active full time career/life to long term disability due to acoustic neuroma or other medical reasons. Through those discussions, I’ve noticed a consistent pattern. It is grief – and I’ll get to that in a minute.

Becoming fully disabled feels like giving up. It feels like failure. We accept too much responsibility and blame our “selves” for physical weakness and brokenness.

I am here to tell you that disability is not for the weak. Strength is required for acknowledgement of real limitations and to speak up for what we know we need. Perseverance is called upon to fight a tougher battle than “before.” It takes tenacity to continue to fight for goodness in life and a grateful attitude when we face long term adversity.

Disability:

  • Is not death. Disability frequently stirs a desire for ability, life, and not giving up.
  • Is a process that doesn’t end often enough with a return to ability.
  • Requires bouncing between pushing our bodies to function as fully as possible while documenting our physical limitations.
  • Brings a new appreciation for life and relationships.

Living life with a disability brings a continuing cycle of grief. Everyone has a different timetable. The actual disability and grief are not cookie-cutter experiences but bond those who live it.  Each stage takes varying lengths of time as it is repeated in various forms.

Triggers can quickly springboard us from progressing to stepping back into grief. Perhaps we inadvertently are reminded of something we used to love to do that is no longer possible. Other times we may get a glimpse, through memories, how relationships have been affected by changes in health.

I decided to “map” the well documented generic grief process to disability, and here’s my take:

 Stage One: Denial and Isolation, or “this is not happening”

  • “I just need a little more time, and I’ll beat this.  Enough already – please.”
  • “I’m embarrassed and really can’t face the world. How will I ever be in a social setting?”
  • “If I just think good thoughts a little harder my body will heal.”

Stage Two: Anger, or “stomping my foot”

  • “This is not fair!  I don’t deserve this. Stupid (fill in the blank)”
  • “I’m not comfortable with vulnerability.  I do not want to ask anyone for help!”
  • “The world is continuing without me in my prior role. I wasn’t indispensable. Really?”

Stage Three: Bargaining, or as I affectionately call it – “If Only” stage

  • “If only I ate better, my body would recover.”
  • “If only there was something I could do to make this go away.”
  • “It must be my fault, and I will be stronger from now on.”
  • “The medical world can cure anything, can’t they?  Isn’t it a science that understands everything about our bodies? If only I could find a doctor who understood my case.”

Stage Four: Depression, or “I’ll just be under this rock over here if you need me, but I’m guessing you won’t”

  • “I’m exhausted. I’ve tried everything. It’s a lost cause. Why even try to be happy?”
  • “Why continue to look for answers in the medical community to mitigate pain, tinnitus, or limitations.”

Stage Five: Acceptance, or “inhale, exhale”

  • “Life sucks but I have things to do. I’ll manage my disability so that I am still aware of the joys of life.”
  • “I love life and will squeeze every bit out of it that I can. I will pay to play.”

As time goes on, we appreciate being in the acceptance phase and learn to recognize it.  We’ve learned not to just cope by treading water but have adapted to living life beyond breathing.  We will have triggers that pull us back into earlier stages of the grieving process but learn to claw back to acceptance again — as quickly as we can

Disability is not giving up but the beginning of a new journey.

 

 

Sometimes we need to use words

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I will be the first person to raise my hand and plead guilty, so please don’t picture me with my nose in the air touting greatness. Instead, picture me clicking “Like” to a social media post instead of taking the time to say a few words. (That is, ‘like’ or ‘+1” or ‘*’.depending on the social media site)

Social media is a powerful tool in our world today. Because of it, we are connected to more people than ever. We connect with old friends, delighted to catch up after sometimes many years. It’s a wonderful way to share family news across the miles. Other times we connect with people who are also experiencing a life event. Topics vary tremendously, including beliefs, travel, parenthood, hobbies, or shared life stages. Other events are traumatic to ourselves and close ones like illness, tragedy, or financial needs. We can now communicate in a truly global way with many despite the fact that we are sitting in a chair, possibly alone in our homes.

Myself — I have connections with friends, family, casual acquaintances. We all have things to share and laugh about. A steady stream of videos fills my feed of crazy and cute. Thought provoking posts help me see things from varying perspectives. I’ve made friends in faraway places and feel like we live next door.

However, what I do find interesting, and a bit disappointing (see finger pointing at myself also), is when people pour their hearts out in a post that we often read, click acknowledgement of, and move to the next post. Especially in closed groups, individuals are reaching out to others who are experiencing things that nobody in their direct daily life can understand. We, fellow members of those groups, are sometimes the only ones who can grasp the severity of what that individual is living – today. Often, we don’t take the opportunity to share our words to let them know they aren’t alone in this world. We don’t take the time to carefully craft a response that really shows that we understand, have answers, or can provide encouragement.

Now, not to be too hard on myself and the rest of us – it does take all of us (no, I’m not going to say a village.)  There are days when I don’t login to any of my social media accounts. I disappear for weeks at a time and am not one to post that I just made toast (although I did once post that I made hot chocolate – lol). Sometimes I browse my news feeds just as a nurse calls me into an appointment, not allowing for a wordy response. I cannot, nor can anyone, take the responsibility of always commenting, but we can do our part.

In the acoustic neuroma world, there are new diagnoses every day. I recognize, and clearly remember, the specific shocked state that one goes into when hearing a brain tumor diagnosis. We want to know that we are the exception to the assumption that a brain tumor changes you for life, or ends our long thought out life plans. We learn that it does change everyone, at least emotionally, while retaining goodness and joy regardless of our physical outcome. There is laughter and camaraderie despite being changed physically – some more than others. We do not have all the answers, but we can be there for each other. We can encourage. We can speak and share.

So, in the season of beginnings, let’s think about actually taking the time to let others know that we have heard them. I thank those who have encouraged and commented as I’ve written this blog. It is that encouragement that keeps me writing. Thank you.

Life is Finite

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Beaver Island

Beaver Island, Michigan

 

Do you ever stop for a just a moment and think about the specific point in time that you are living? Maybe it’s soundless; or piercingly jarring. Maybe the air is filled with the fresh scent of spring flowers, or dampened with rain. Maybe the air is filled with smells that we would prefer to escape. We may be cold and curled up under a blanket; or hot and peeling off layers until we can breathe again. Maybe we are distraught, or dancing with delight. Our mood may be right at the very narrow ledge of slipping down or up. However, wherever we are right now, we are alive.

I don’t know what the absence of sound is anymore since I have roaring tinnitus. I don’t know the absence of pain since my brain surgery — but I am alive. I am here. The people in my life allow me to stand with the strength of others instead of struggling alone.

I lost a friend recently. Tragically and senselessly. A friend who was younger than me. Healthier than me. Someone who I would have BET would outlive me and hopefully stop to remember me for a moment after I passed. But that is not fate. That is not the world we live in. That is not the world that my friend just left.

My heart hurts even as I laugh at memories of delight. We worked together and played together. I respected him immensely. I admired his incredible intelligence along with an amazing and unique mix of personality. We had so many stories that when we got together, we would revisit memories until we were almost falling out of our chairs in fits of laughter. And then we would add one more adventure to the beautiful portfolio of stories. A portfolio that ended too soon.

We often spin the gears in our brain trying to figure out why life is the way it is. We complain about the unfairness of it. We pout because doors have been closed to us.

But we are alive to pout. We are alive to complain. I prefer to be alive reaching for joy. Alive to reminisce even as I move forward. Alive to feel joy and treasure friendships that allow us to feel pain when the door to their lives close. Because to feel, to cry, and to laugh is to live. To feel heaviness in our hearts is to acknowledge that we experienced love, friendship, and camaraderie in this journey we call life. Life brings beauty, even in storm clouds.

Acoustic Neuromas and New Beginnings

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Maxwell

Maxwell

Sometimes we need new beginnings. Sometimes new beginning are thrust upon us.

Have you ever pondered how many new beginnings you’ve had in life? We frequently focus on losses, and uninvited change. However, each of these events have also provided new beginnings. Each event starts with a feeling in the pit of our stomachs that tell us we can’t but then we do.

I have had many pets in life, and have loved them all. They delighted and frustrated me. But they have all passed on. Today I am in the midst of a new beginning with Maxwell, my new pup. I could have gotten a breed that I had previously had, but chose to get a mixture different from anything in the past.

Maxwell and I plan to have many happy years together. That may or may not happen, but I can live today and enjoy where we are now. I am still sad about the loss of each and every one of my previous pets, but I’m delighted to be at a new beginning, again.

My career spanned many years and included delightful successes as well as frustrating changes or lost opportunities. When I look back, each of those organizational or company changes brought new beginnings. I met people who I would not have known. I missed some (admittedly not all) coworkers, but made new acquaintances and lifelong friends.

I never, ever, ever would have chosen to have a brain tumor. However, going through this experience has given me gifts that I would not have received otherwise (yea, in addition to unwelcome gifts of headaches, constant ringing in my ears, single sided deafness and facial paralysis issues). I’ve seen some common threads among people who have struggled with the unthinkable and survived; even if survival meant a new life.

Compassion – I appreciate the medical community more now because I have experienced the commitment and caring that is consistently provided to people in their most vulnerable states. At times I had admittedly been frustrated by a lack of answers, but the compassion that people are capable of is humbling. The way that the Acoustic Neuroma world circles newbies into the fold with support and answers is inspiring.

Humor – Through my writing, social media groups, and speaking with people, I’ve developed a much better appreciation for not only what we endure in life but how humor always seems to keep us from going over the edge. We are happiest when we learn to laugh at ourselves and circumstances.

People – I have wonderful people in my life now who I would not have met if I hadn’t endured what I did. Friends, acquaintances on social media, and readers of my book. I’m feel blessed with the people in my life. Even as I’ve grieved the loss of people who have moved away in their lives.

New Opportunities – Each person can identify a way that their lives has been redirected. For me, I have discovered the love of writing and hearing that my words connected with a reader. Writing is something that I can do even while in pain. Perhaps lying motionless, my mind can divert to thinking of ways to describe things in words. Maybe the pain of the moment. Maybe with thoughts of where I’d rather be and how it would feel.

Courage – I have been humbled by the common thread of courage in the Acoustic Neuroma world. I think having to face an unthinkable obstacle gives us courage. I found the courage to write and blog. Sometimes I only am able to find the courage to get out of bed, but I do. Others have faced physical challenges just to show that they can. Running, skydiving, rock climbing, and biking have been wonderful progress markers for people following treatment. Graduating from walker to cane and then just plain walking takes courage for others. Courage keeps us moving forward.

Again, I address the glass half full or half empty. I, Sally Stap, choose half full and capable of holding even more. I choose to see the world as a collection of individuals seeking joy in life and not giving up.

Myths About Acoustic Neuroma Brain Tumors

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p0047

“Oh no. You have a brain tumor. Cancer stinks.”

Yes, cancer is a terrible thing, but not all brain tumors are cancerous. Acoustic neuromas, as well as many other types, are almost always benign.

“When is your surgery?”

Treatment is not always surgery. Many patients are put into a “watch and wait” category, which means they are doing their best to continue day to day life with a mass in their brain. If there is not much growth or side effects, the tumor is left alone for years or forever.

Radiation is a second form of treatment. The tumor is radiated and dies, leaving the dead tissue inside. Radiation avoids the challenges of surgery, but can also bring the side effects of hearing loss or facial nerve damage.

There are many tumors that require surgery though, and some cannot be fully removed leaving patients at risk of regrowth. Many times a balance has to be made between retaining facial, balance, and/or hearing function with complete removal. This decision is usually made in the operating room. Doctor’s always strive to remove as much as possible.

Which leads us to the biggest myth:

“Benign is not harmful”

Benign is not malignant and that is a good thing. However, Benign does not mean that radiation or surgery was a simple in and out procedure. It doesn’t mean that you didn’t have damage to your body.

“You’re the same person, right?”

Well, actually, no. Even though an acoustic neuroma is at the cerebellum and brain stem and not in the frontal memory part of your brain, we have been changed. Maybe we have the same personality, but possibly muted. A thoughtful person in the past may now be much more appreciative. Individuals who were pain free in the past and unaware of what a migraine headache is are now learning to live with chronic pain. Perhaps without balance issues prior to treatment, that person is now careful to not turn too quickly – or may need a cane. Sometimes a person is now less tolerant of some things and more forgiving of others.

After AN diagnosis, many of us have an admittedly better lifestyle. We are more aware of our mortality and the importance of eating, sleeping, and exercising well – and consistently. We are more aware of relationships and milestones in life.

Many have shifted from living with a bundle of non-stop energy to now being fatigued by the extra work our brains have to do constantly. We learn that taking naps is a normal part of life and not something to feel guilty about. Our brains demand extra sleep to cope with pain, tinnitus, and balance challenges.

While many AN patients now have a better appreciation for life, they now battle depression – a physical reality as part of recovery. It’s a tricky combination to acknowledge and battle depression even while grateful for life itself.

Many of our friends and family take a while to recognize that the life of the party before is now unable to be in loud settings. An extroverted, life loving person is now perhaps more withdrawn in loud settings.

Not a myth – We are still here.

We are happy to see things that we may have missed given different circumstances. We want to push past our new realities and are a tenacious bunch. Everyone is changed by significant life events, and an acoustic neuroma brain tumor fits nicely into that category of “significant” – even though it’s benign. . .

FYI, here’s the definition of Benign and Malignant:

Benign Tumors

Benign tumors are typically slow-growing and rarely spread to other areas of the body. They often have well-defined borders, so surgical removal can be an effective treatment. However, the location of a benign brain tumor can have a significant impact on treatment options and be as serious and life-threatening as a malignant tumor. Benign brain tumors can be considered malignant if they are located in areas of the brain that control vital functions like breathing

Malignant Tumors

Unlike benign tumors, the cell structure of a “malignant” brain tumor is significantly different than that of “normal” brain cells. Malignant tumors tend to grow faster and can be more invasive than benign tumors.  Malignant tumors are life threatening. Sometimes malignant brain tumors are referred to as “brain cancer,” though they do not share all of the characteristics of cancer. Most notably, cancer is characterized by the ability to spread from one organ to another. It is very rare for a primary brain tumor to spread beyond the brain or spine.

Source: http://www.abta.org/brain-tumor-information/diagnosis/malignant-benign-brain-tumors.html

 

Acoustic Neuroma – Are you Coping or Adapting?

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Coping Vs. Adapting

Coping Vs. Adapting

I have taken exception to the word cope when discussing my post-acoustic neuroma life. I prefer the word adapt. Given that I haven’t fully understood why I bristle, I decided to dig into the two words a bit deeper. Satisfied that my instincts were correct – or my understanding of their definitions, I now feel even more able to clarify differences between the words.

Coping is immediate. When we are first diagnosed, we enter survival mode. We look for short-term, immediate answers. We react and, frankly, panic. We talk to doctors, family, friends, and often reach out through social media for answers. We may weigh treatment options, or be only given one choice depending on our individual situation.

Adaptation is longer term. Once we have “coped” with the immediate crisis, we shift into life with a brain tumor diagnosis. We adapt practices in our lives that are sustained long term – regular medication, daily naps, no roller coasters, or possibly new diets. Adaptation to life either after Acoustic Neuroma removal or watch & wait is a continuous process. Our bodies continue to heal, sometimes at a much slower rate than desired. Or our watched tumors continue to grow, or hopefully not. While those of us who had treatment learn to live with post-effects, watching a tumor that’s still in your head for changes is no picnic either.

As we adapt, we learn to plan our time and energy. We have gained a new appreciation for life and frequently have new priorities.  We use our “resources” wisely. We appreciate what we have and learn to focus more on life than issues.  We find ways of facing new adversity in different ways. We find a blend of our old selves and the new, adapting to the person we have become. We treasure relationships and life events that we know we could easily have missed.

So while, we do cope with our diagnosis, treatment, waiting, or after-effects, we have become skilled at adapting in sustainable ways to a life newly appreciated.

Thank you for allowing me to make the distinction. It makes me happy.

The Good Side of Surviving An Acoustic Neuroma Brain Tumor

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IMG_5452 cI have to tell you that I still kind of bristle when someone says, “Hasn’t this turned out to be a blessing in your life?”  Well, no. I still would prefer to have NOT had a brain tumor. I’m still working on the “be thankful in all things” part of my experience. I just have to say.

However, given that I did have one (without my vote), there are good things that followed the experience. I have a new appreciation for:

  • Life — At times, because depression is a big part of Acoustic Neuroma recovery that is frequently unspoken or acknowledged, I felt guilty for a long time when I thought death would be better. I was in pain and my life was upside down and I just didn’t see the point. However, with a lot of work, I do now see the value of life and treasure it.
  • Family and friends – see above. If it wasn’t for the people in my life I wouldn’t have had a life preserver to hold while I regained my bearings.
  • The medical profession – not that I wasn’t impressed with doctors and nurses – but when you go to sleep not knowing if you will wake up, you pay more attention.
  • Modern medicine – Having access to modern medicine and state of the art equipment made a huge difference in my outcome. Even though I do still have “issues”, it sure turned out better than it would have in the pioneer days.
  • Research – Even as advanced as medicine and disease understanding has come, there is more that we don’t know than we do know. Advancements are still needed. Research into the cause of disease and the cause of side effects is lacking.
  • Little moments – Sometimes just having one good moment or experience is worth a day of pain in payment. That moment is savored more and replayed in my mind as I distract myself from pain.
  • Big moments – I just, perhaps arrogantly, expected to be here for my daughters’ weddings and the birth of grandchildren. I now appreciate those moments and acknowledge what I would have missed if I hadn’t had survived a brain tumor.
  • Playing through pain – Sometimes a precious moment happens to coincide with an incredible headache. Sometimes I find it possible to push the pain back enough to be in the moment that will never come again.
  • Dog intuition – my dogs showed incredible insight as they slept when I slept and played when I played. They kept me grounded by reminding me that life does go on and they needed food, walks, and to go outside. They are now gone but I have wonderful memories of their emotional support when I needed them.
  • Cat indifference – My cat is always there to curl up for a nap, but has few other demands. She has no use for my complaints and just flicks her tail in response. She helps me recognize that I am not the center of the universe. There are bigger issues, like catching a mouse.
  • Sight – even though I can’t see as well as I used to and struggle with a dry eye, I appreciate what I can see. I appreciate colors and variation in shades. I appreciate sunny blue skies as well as the darkness of ominous snow clouds.
  • Hearing – single sided hearing reminds me that I can hear. Not optimally, as nature intended, but I still hear my grandson’s laugh and adorable voice – even if I can’t figure out where it is coming from. I can still hear my daughters when they say “Mom.”
  • Silence – I no longer have silence due to the ringing in my head, but I can appreciate how the ringing can calm down in quiet, tranquil settings.

The list could go on.  So, bottom line – I don’t recommend having a brain tumor, but it does help us grow in our appreciation of life. It does help us prioritize what is important and what is

Life is worth living

Life is worth living

insignificant. It is something that we want to hold tight. We know that life is short.