Tag Archives: brain tumor

Lesson Learned From Brain Surgery – The Power of Caring

DSCN4903Lesson Learned from Brain Surgery – Never underestimate the power of caring

In the hospital following surgery, I learned the power of caring and compassion.

Even through my fog, I was keenly aware of how kind, attentive, and caring everyone was. The nurses were used to seeing such carnage and told me how I was doing at each stage of recovery. They were experienced enough to judge.  They would pause in the middle of their hectic shift to talk, encourage, or put a hand on my blanket.

Kayla always pushed me to do one more thing. Dad was there to talk or to crack a joke. They saw me, and not the horrible, ragdoll me.  Kendra called from Europe and sat on the phone with me, caring through the air waves.  My brother and mother called and encouraged me and reminded me that it was a good thing to still be alive.

Sorry to be a bit gross, but I was dizzy after having my brain jostled and was sick frequently.  All people involved with my care accepted the normalcy of handing me a barf pan or cleaning up what missed it. I can’t describe how caring and gentle that was – as strange as it sounds.

Lessons Learned From Brain Surgery – Talk

The Hand

People will get sick of hearing you talk about your limitations. You will get sick of yourself if you don’t adapt and focus on what you can do instead of what you can no longer do.

Depending on your age, you may remember the phrase “talk to the hand.”  it was popular in the 1990’s and was in many television shows and movies.  It implied that one wasn’t listening so you might as well talk to the hand that is in your face to hold you at a distance.

Talking about Acoustic Neuroma experiences is a tricky topic.  While it is important to focus on positive and not negative, there is value in talking about your experience:

Camaraderie is important. Finding others who experience this is helpful.  Friend and family support is critical to our well being.

Shared understanding.  Caregivers and family need and want to understand how life has changed for us following brain surgery.  Letting them know how they can help you may be difficult but it pays off in the end.

Authenticity. We need to talk through the changes and gaps between who we were and who we are now.  We have to come to terms with the “new me.”

We are our own advocates.  While the burden of this entire experience is heavy and there is nothing we would like better than to relinquish dealing with doctors, hospitals, jobs, disability as well as the world in general – we need to find the strength to continue on and stand up when we need something.  Don’t accept being brushed off if there is an issue.

Serving others.  People who are newly diagnosed with acoustic neuromas need the support of those who have gone through the process of treatment selection, possibly treatment, and likely changes.  Being available to others reassures them that they are not alone in outcome issues.

When is it too much?  When is it time to change the subject?

When you feel yourself cycling and repeating yourself.  There is a point where we need to accept where and who we are.

When you are feeling sorry for yourself.  While some self pity is actually a good thing.  We can all feel sorry for ourselves for limited periods of time and that’s healthy.  However, we cannot let a brain tumor define us.

When we begin to focus too much on what we cannot control.  Life changes in many ways that introduce us to paths that were unexpected.  “It is what it is.”

We are dwelling too much on what we lost.  Life is a moving journey.  We would not want to stand in one place forever.  Just like we change some people in our lives over time, lose or change jobs, and live in different homes – going back is not an option.  Just like a favorite pair of jeans that rip out and we finally reluctantly discard them – we are now finding ourselves in a new place in life.  Moving forward is our only option.

We give up after a failure.  One thing that we as acoustic neuroma recipients have learned is that we will have days that are great followed by days when we can not move, or times when we lose balance, or even yet another time when we have to explain to someone that we didn’t hear them because we are deaf on “that side.”  Over time, we learn new adapting methods that ease those future “failures.”  We need to find a balance between accepting and pushing.  Only we know our bodies and can make that call.

Acoustic Neuromas are each unique.  Like snowflakes, we each have our own experiences and outcomes..

 

Aftermath of Brain Surgery – Single-Sided Deafness

 ear ear 3

It LOOKS normal enough. . .

…wow – this turned into a LONG post…

Single sided deafness (SSD), losing all hearing in one ear while still having normal hearing in the other, is a bit odd. At first, I didn’t notice it or even believe it.  But then again, I had just come out of brain surgery, pain was stunning, and my head was wrapped in gauze.  Hearing wasn’t at the top of the list of things to worry about.

When I did start to focus on it, there still didn’t seem to be any difference.  I was in a private hospital room and could hear anything that was said in the room.  No problem, I thought – I’ve got this.

Then I started to notice little things.  If I laid my head on my pillow with my good ear down, it was very quiet except for the sound of my heartbeat.  That was actually kind of a good thing.  I always sleep great with my good ear down. Noisy hotel room? No problem – left ear to pillow!

As I recovered and found myself in noisy settings, I quickly learned what the issues are. . .

– I have to mute the television if I want to talk to someone in the room.

– If I’m driving, it’s a challenge to hear my passenger talking.  My good ear is toward the window and road noise, my deaf ear is pointed right at the talker.  Listening to the radio and talking in the car isn’t even an option if I want to understand anything.

– When talking on the phone, I have no idea what someone next to me is saying on the side, like “order fried rice too”, or “tell her hello.”

– In a store one day, I heard someone far away asking someone if they needed help.  Then I realized that it was a sales person standing right next to me talking into my deaf ear.

– Think about this a bit but When people hug hello or goodbye, it’s generally with their head to the right of my head.  Whispering something into my ear, like “Good to see you”, or “Let’s do it again” is lost on me.  My nephew asked once to be reminded of my deaf side so he would be able to whisper his Christmas wish into the ear that would hear it.

– At a restaurant, I’ve learned that background noise is an issue.  I can’t hear the server taking my order but I can tell you that the person on the other side of the restaurant was talking about their weekend. The brain loses its ability to differentiate background and foreground noise like it does with two sided hearing.  Not sure why.

For awhile, I decided to barrel past it.  When servers asked me a question I didn’t hear, I pretended that I knew what he/she was asking. However, I learned that it didn’t really work because I would answer the wrong question, causing more awkwardness than if I just ask for a repeat.

Adaptations: So, it is what it is, right?  So I’ve adapted in some of the following ways:

– I let someone else step up to a hostess in a restaurant to ask for a table.

– My family and friends know, so when in restaurants or stores they simply answer the question for me.  It’s surprising how many times I don’t even know I am being spoken to.  I’m ok with help and appreciate it.

– If ordering Chinese or pizza, I hand the phone to someone else, as I can’t hear anything but the phone conversation. Then I say things to them on the side because I know they can hear me. (tee hee)

– I’ve learned to just tell people, “Sorry, I’m deaf on that side.  Could you repeat what you said?”  It generates some alarm in their eyes.  They are embarrassed or apologetic.  Sometimes I’m not sure if it’s for me or them.  I am no longer awkward about it.  I just laugh it off and have learned that it’s ok.

I realize that in some ways, being SSD has allowed me to be less of a control freak, and let others handle little things that I don’t really need to!  Learning to let go, laugh a bit, and not allow it to be MY awkward issue has helped immensely.

Lessons Learned from Brain Surgery – Humor

pic0008

A sense of humor will give you a better temperament than frustration. Learn to laugh at yourself. It will help you to feel less self-conscious.

My family is always joking around about things and it was no different with brain surgery.  We laughed about pretty much everything that we could to help lighten the heavy burden that we were living.  When I say “we”, it did not escape me that even though I was the one in bed bandaged and tangled with medical equipment, “they” were tasked with keeping my spirits up.

When I was home, we laughed when my brother had to push me up the stairs because I didn’t have the energy to make it by myself.  We laughed that I used a ski pole to navigate before I got a cane.

In Florida, when I listed to the right while walking on the beach, my friends were always between me and the ocean. “No way. I’m not going to tell your family I let you walk alone and you veered into the ocean.”

When I give the wrong answer to a waiter’s question because I’m trying to fake that I actually heard, it’s humorous to see their expression when saying that I’ll pay my bill with “French fries, not chips.”

I always strive to be a “Pleasant Miserable” Person when I’m having a bad day.  I strive to find laughter and joy from a vantage point that is, simply, ridiculous.  A Brain tumor?  Deaf in one ear?  Unable to smile normally?  Unable to move because of head pain more often than I want to acknowledge?  Yea, you gotta laugh. . . once you stop crying.

Life Lessons from the PETS – Sometimes you need a thick skin

     Gabby kitten

Sometimes you need a thick skin (From Gabby) – “I’m here! Let me lie on top of you with my whiskers in your face. OH, sorry, I know you didn’t MEAN to push me off the bed. Here I am again in your face.”

(Gabby is now 15 – this picture is when she was a bitty kitten)

Caregiver Tip # 13 – Listen A Lot

PD_0064LISTEN A LOT

While this sounds obvious, it is worth pondering a bit.  We are all driven to fix things and want to fix broken thing in the lives of our loved ones.

However, some things can’t be changed.  Patients – who were simply “people” the day before – need to talk through what they’re experiencing.  Brain surgery is something that leaves one feeling unique and isolated.  Unique because it is not common to have anyone in your immediate circle of friends and family who have had brain surgery.  Isolated because the experience puts one’s life into a tailspin.  Whether a short and uneventful tailspin or an unending circling of the drain, one’s life is effected forever.

Listening, without trying to solve anything, is a skill we can all work on.  Being listened to is appreciated in times of high stress.  And then, when you feel that you have listened thoughtfully and deliberately to a point where the patient is repeating – distract by finding something “normal” that you can do together.

The word “Speculate” became a joke in my family.  After a shocking diagnosis, we speculated nonstop about what treatment options would be available to me.  Once surgery was determined to be my only option, we speculated until the day of surgery about what that experience would be like, what the outcome would be, and anything we could think of.  Speculation was the word that we would throw out to each other when it was time to take a break and live or talk about something else.  The combination of speculative talk and continuing to live life helped me get through a challenging period in my life.

Life Lessons From Pets – Life Can Change In An Instant

singing paulo

While recovering from brain surgery, I had a lot of time to watch my pets.  One day, I decided to capture the lessons I had learned from them.  Here’s one of them:

Gina and Paulo, my Italian Greyhounds, taught me:

Be Optimistic, Life can change in an instant!

“Let me outside! Really, it is important! Maybe it was snowing 5 minutes ago, but it MIGHT be spring now. Really, I promise! If you get up off the couch and walk over here I’ll go outside THIS time.”

 

Caregiver Tip #12 – Arrange a Hand-Off Between Caregivers

Have a good hand-off if caregivers change over the first couple weeks. That will ensure whoever is care giving has all the information needed. Details on medication schedule, eating, resting, and any limitations should be discussed.

In the hospital, my family took turns being with me in the hospital room.  Then, for the first few weeks, my parents alternated with Kayla as my caregivers.  As they switched back and forth they would fill each other in on the current status and any changes to medication, activities, or doctor’s orders.  It was helpful to have them share so that we had consistency in care.

 

Life Lessons from the PETS – Live for the moment

I have spent many years observing the pet world and would like to share some of the wisdom that I’ve picked up. (Please note all quotations are from the pets)

ginaLive for the moment

“What’s up? Wanna lay down for a while? Okay,” followed by nestling into the blankets as if for a lifetime.

“What? You moved? Let me jump up just in case you wanted to go somewhere – the next room counts as going somewhere.”

gina 1