Tag Archives: smiling again

The Holidays – Two Sides of a Coin

half and half

Yep, here I am I am on the holiday bandwagon saying THANKS. As an acoustic neuroma recipient, there are also things that I admittedly am NOT thankful for and willingly admit it. So, in the spirit of making lemonade out of lemons (forgive ALL my intentional clichés), let me see how many things I can turn around.

  • I am NOT thankful for getting a brain tumor, but I AM grateful for many lessons I’ve learned since my diagnosis.
  • I am not thankful for daily headaches, but they have helped me learn to live fully on days that are less painful. I have learned to observe more and appreciate non-participation at times from my quiet corner of a noisy room when my head is screaming.
  • I am not thankful for facial paralysis and synkinesis, but it has helped me focus on people instead of their appearance. I understand what it is to feel different on the inside than what I can express on the outside. I’ve learned that body language is much, much broader than a smile.
  • I am not thankful for losing the hearing in one ear. I am thankful for the hearing that I do have. I have learned to let go of control in some situations (yes, I have been known to be a control freak). I now enjoy seeing others lead and find it relaxing to let others communicate. I’ve learned to trust the people in my life to let me know when I didn’t hear something important, casually and without making it awkward by gently repeating what was said.
  • I am not thankful for having a dent in my head. I have, over time, learned to chill more and relax tense muscles. Inhaling and exhaling are underrated. I pull my shoulders down and back, releasing tension that builds on itself in my body. I’m amazed at the difference I feel almost instantly upon a posture change.
  • I am not thankful for tinnitus. It isn’t fun to have nonstop buzzing in my head that varies with eye movement. It is not fun to have roaring in my head after braving a concert, movie, or noisy restaurant. I have learned to be thankful for things that peacefully block the noise somewhat. Natural sounds of waves bring peace and solitude. Birds and rustling in the woods is pleasantly distracting. I find it interesting that the best sounds for blocking tinnitus are sounds in nature.
  • I am not thankful for the independence that I lost. I appreciate regaining what I have and value freedom. Conversely, I’ve learned that dependence is sometimes a gift for both parties. I’ve learned to better appreciate relationships and people in my life.
  • I am not thankful for the emotional upheaval and depression that I’ve had to fight through. While deep in despair, I remembered what happiness felt like and fought to find and embrace joy again. I treasure smiles, giggles, and laughing.
  • I found nothing about a brain tumor to be funny despite nonstop jokes that I made when diagnosed. However, I’ve learned to laugh at myself and not take things so seriously. Really, not hearing someone is no reason for humiliation or embarrassment. I’ve learned to not pretend to hear what I didn’t and simply ask for a repeat of the question.
  • I was not at all thankful to end my career early despite years of wishing (like most people) for early retirement. Brain surgery is not a good way to get out early. I did learn though that I have a passion for writing and it is something that I can do when able, and think about when disabled by pain or fatigue. I can connect with people in ways that bring community and mutual benefit. Even though I don’t do what I used to, I have been able to find a new place in life.

I could go on and on, but won’t. Overall, I’m recognizing that life truly is a gift with no guarantees. While issues following brain surgery are real, I’m alive to experience more joy and human connection than sorrow, discomfort, and isolation.

Acoustic Neuroma – Are you Coping or Adapting?

 

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.

Do I have an Acoustic Neuroma? Symptoms

Wondering. . .

Wondering. . .

First, I need to make it very clear that only a medical professional can diagnose an Acoustic Neuroma brain tumor with the assistance of an MRI or other imaging equipment. This is a list of symptoms that one may  or may not have to indicate the presence of a tumor lurking in your gray matter.

Most people have never heard of an acoustic neuroma. Even when I suspected that there was a tumor growing in my head, doing a search on “brain tumor” was way too broad and overwhelming. It wasn’t until after my MRI that I learned the name and could educate myself.

I have listed some common complaints leading to a diagnosis. However, as we frequently say, each acoustic neuroma tumor and treatment experience is as unique as a snowflake. They have snow in common but their size and shape vary individually. Each person has a different symptom that prods them to seek treatment. Each person has a little different location of the tumor – some more into the ear canal, some more in the brain. Some push on the brain stem, and most crown the cerebellum. Acoustic Neuromas are easily identified with imaging as it has a distinctive location and general shape.

Here are some common issues:

Hearing Loss – Most people have changes in their hearing as they age. However, if one ear has lost significantly more hearing than the other, it is called unilateral hearing loss which could indicate a tumor growing into the ear canal surrounding the auditory nerve. This was my trigger for treatment.

Tinnitus – Loud ringing in the ears can be caused by many things and is not typically a primary driver in diagnosis. However, as it gets louder, we become more and more aware of it. We hope that treatment will result in less ringing, but unfortunately the gift that keeps giving frequently takes our hearing and leaves loudness in its place as the brain is confused and tries to turn up the volume on the deaf side.

Facial sensations or numbness – I felt like I was drooling but my face was dry. My effected eye started to lose its blink reflex so it was open wider in pictures. Each person’s symptoms are based on how the facial nerve is affected. Because there isn’t a lot of empty space in our heads (true, despite common jokes to the contrary), when the acoustic neuroma grows, it crowds the facial nerve. Following treatment, some people have short or long-term facial paralysis and some do not. In my case, the facial nerve had stretched out to be a flat ribbon stuck to the tumor, which was not good.

Taste changes or difficulty swallowing – Again, nerves that are in close proximity may become effected. Following treatment, these may begin to happen on a short or long term basis. For me, swallowing wasn’t a problem, but food tasted tinny after surgery for a while. Occasionally a strange taste still returns for a short time.

Vertigo and balance issues – if the room is spinning and you haven’t had a drink, you have vertigo. It is a strange sensation that is helped with a foot on the floor or a hand on the wall. I had vertigo many years before diagnosis, attributed it to frequent flying, and held the wall for a week or two until it subsided. My brain adjusted to the loss of right cerebellum functioning and shifted to the left side, along with using other input for balance. As intricate as the brain is, it is very adaptable. My surgeons were surprised that I wasn’t complaining of balance issues despite the size and location of my tumor. They said my left cerebellum had taken over gradually.

Headaches – Many acoustic neuroma patients have had unexplained. I did not have headaches prior to surgery, but still have them afterward – six years out.

Mental confusion – This is not as common but can be linked to acoustic neuromas. The location of the tumor primarily effects our physical instead of mental faculties, but with the brain anything is possible. Following treatment, the same is true.

Fatique – Fatigue can come on very slowly so it hard to link with a brain tumor. However, both before and after treatment is can be experienced.

Finding out, or even suspecting that you have an AN is scary. It is important to remember that experiencing one or more of these symptoms does not mean that you have an acoustic neuroma, but it is worth having checked out. Many of us wish that we had recognized some of these signs earlier. However, the tumor typically grows quite slowly so we just don’t notice symptoms until afterward. Hindsight. . . well, you know. . .

What symptoms did you experience if you’ve had an acoustic neuroma?  Did I miss any?

Acoustic Neuroma brain tumors and Fatigue

1977 - I thought I was tired then. . .

1977 – I thought I was tired then. . .

I would have written this post sooner, but I was too tired.

Merriam defines fatigue as “the state of being very tired: extreme weariness.”  If you ask an acoustic neuroma survivor about fatigue there is a good chance that they will share a new appreciation for the word. We’ve all been exhausted in life, but there is something about a craniotomy that takes strength that is hard to regain. Yet it also brings out a strength we didn’t know we had.

Fatigue is a very familiar word for anyone who has had treatment for a brain tumor. We need naps. It’s hard to explain the feeling of such fatigue coming over you in the middle of the day that you HAVE to take a nap. Sometimes it is emphasized by a dry eye that will not be satisfied with artificial tears. Closing it is the only way to regain comfort for the remainder of the day. Sometimes it is a dizziness from overtaxing our vestibular (balance) system. Other times it is a matter of just being sick of that darn ringing in our ears and needing to escape it for a short time while unconscious. What used to be a ten minute cat nap is now an hour or two.

Fatigue is a recognized symptom of an AN, but not always discussed. There is an assumption that fatigue is caused by the surgery and recovery process but will go away when “healed.”  However, it is frequently a long term or permanent state. It is intensified by drugs that often are required for lingering issues after treatment – pain and depression as examples. It is also caused by the extra work that the brain has to do to compensate for balance or hearing.

There are synonyms for fatigue. Burnout is one that is usually associated with burning the candle at both ends. Burnout for a brain tumor survivor may be from continually treading water and trying to regain one’s old self. It may be from trying to return to work or life having to adjust to new challenges.

Frazzle is another synonym, implying out of control or mentally scattered. That is also accurate for AN survivors as we attempt to sort out sounds if left single sided deaf. Where did a sound come from?  Or what is the person in front of us saying when there is background music or noise. We can feel frazzled and feeling unbalanced from excessive movement.

Prostration is a word that I totally get now. Being powerless over the way that your body has removed control over when a good day will come or when you find yourself flat out on the ground either face down (prostrate) or face up with arms flailed to as if we are making a snow angel. Exhale. . . .

Antonyms exist for fatigue also. We do have days when we feel refreshed, and we appreciate them. We look at the puffy clouds against fall colors and inhale with a love for life and the people in our lives. We feel revitalized when we realize how little we now care about things that may have been enormous in our prior lives. We feel rested when we have a good night’s sleep without being awakened by a headache.

We have learned to live minute to minute. We have learned to take one step at a time. We have learned to live with fatigue and know when we have precious moments of rest and peace.

A common statement that I hear is “I don’t know how you do it.”  Well, like with anything, one step at a time. One obstacle at a time that is overcome or adapted to. Although we have fatigue we also have a strong desire to squeeze every moment out of life.

Reference – http://www.merriam-webster.com/dictionary/fatigue

Audio Book Challenge on Facebook

Smiling Again Audio

In recognition of having my audio book released, I thought I’d start a challenge. When I get to 500 likes on my Facebook Author page, https://www.facebook.com/Sallystapauthor I will have a drawing to give away five audio books through audible.com. If you want to be included, please LIKE my Facebook page, or comment on a post about the challenge. Please help build my likes to the next milestone by sharing the page with your friends on your timeline, or retweeting.

The sooner I get to 500, the sooner I’ll be sending out audiobooks to the winners!!

Thank you to everyone who has been supportive of my blog. You keep me writing!

The Good Side of Surviving An Acoustic Neuroma Brain Tumor

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.

 

The Good Side of Single Sided Hearing (or SSD)

glass half full

Glass Half Full

Single Sided Deaf or Single Sided Hearing? Let’s look at the good side of this condition many of us live with. Today, I choose the glass half full. I am fortunate enough to have great people in my life who are with me on this journey. I really appreciate each and every one of them. They have helped me laugh even as I sigh, and that has helped me seek joy even in life changes that I didn’t choose.  One of those is hearing in only one ear:

  • Even though I miss what someone just said on my deaf side, I may hear some good gossip from across the room on the good side (the ability to distinguish the source or distance of sounds is gone)
  • I “really” see the person on my deaf side because I turn my head almost 180 degrees to hear them, positioning my baby blues to gaze directly into theirs.
  • I’ve trained my family and friends to walk on the proper side, which sometimes turns into a funny dance until everyone is properly aligned. Sometimes they figure it out themselves when I don’t respond to a question and accept their responsibility to reposition. “Oh yea. . .”
  • I make people feel special at dinner by sitting with them on my good side. Or people wait for me to choose where I sit first, allowing me to determine the best spot for hearing.
  • I don’t have to fight the line to put my name on a restaurant waiting list because my friends and family do it while I quietly relinquish control and take a seat in the waiting zone.
  • I could get a cool tattoo with an interesting graphic designed to indicate my deaf side (I haven’t chosen to do this but many have)
  • When talking on the phone, the caller has my full attention. Of course, that is unfortunate for anyone on the bad side saying, unheard, “Have them pick up pizza on the way.”
  • Multitasking– trying to perform tasks while listening is difficult so I tend to be very focused on one or the other. I have an excuse for not knitting.
  • I’ve become accustomed to reading television using closed captioning, thereby not missing what people are saying in unfamiliar accents or low, menacing voices. I can sit back and enjoy popcorn event though crunching drowns out voices.
  • I’ve learned that “head shadowing” is the term for what causes many things said on the side of the deaf ear to be lost completely or sound like they are coming from another room. Not to be technical but low-frequency, long-wavelength sounds bend around a person’s head and are easier to hear. High-frequency, short-wavelength sounds are not as elastic and do not bend around to the good ear. The frequencies of speech vary, causing patchiness in what is heard.  I just tell people, “Let me know if I’m supposed to hear anything.”  This allows me to not worry about what I might be missing.  I can’t be held responsible for what I don’t hear, right? (wink)
  • Oh, and the obvious. . . Sleeping is awesome when I put my good ear down on the pillow and sleep like a baby.