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Yes, really, sometimes we need to enjoy the view from where we are!!
A good view from the bottom
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Tag Archives: surgery recovery
The Woods (an excerpt)
Acoustic Neuroma brain tumors and Fatigue
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
The Good Side of Surviving An Acoustic Neuroma Brain Tumor
I 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
insignificant. It is something that we want to hold tight. We know that life is short.
Acoustic Neuromas – Alive, but. . .
Acoustic Neuroma survivors are just that. We have survived. We are alive. We are grateful to have days and moments with our families that we would not have had without intervention.
I was able to walk my daughter down the aisle at her wedding. I have been able to hug, kiss, and adore my grandsons who I might not have ever met. I’ve loved every minute with family that is spent laughing, sharing, or even crying. I’ve truly appreciated the friends in my life who I can travel, play computer games, or have lunch with. I have been enriched by meeting people in my life who I wouldn’t have meet prior to a left turn in life caused by brain surgery.
Other AN survivors would say the same thing. We know that life is a gift not to be wasted. We know that memories are being made that might not have been.
But. . .
It’s OK to have a down day. Like any loss in life, the absence of something is felt in our changed hearts. So, it’s OK when we have a day to say “Yikes, just let me exhale and feel sorry for just a minute.” It’s good to adapt to life’s changes; even as it’s OK to feel disappointment. It takes energy to move forward, which means we have to tuck into ourselves at times to reach our spiritual reserves.
Acoustic Neuroma brain tumors leave each with unique check marks on a menu of outcomes or ongoing issues:
For those impacted by facial paralysis, full or partial, we miss our smiles. Faces are the first thing that people see. We don’t think we’re adequately expressing what we’re feeling when part of our face is frozen, experiencing Synkinesis, or tied up in knots. Yes, I reread the blog post that I myself wrote about smiling and pictures after squirming in front of a camera recently for friends who sincerely want me in their memories. Those around us see into the moment, not the expression captured in a picture. We have to continually remind ourselves of that.
For those with trigeminal nerve damage it means a loss of sensation on the face; or a change in the taste of food.
For those with single sided deafness – yes, we are also single sided hearing. But we miss being able to discern the source of sound. We feel apologetic to anyone sitting on the deaf side in a noisy restaurant after we’ve said “what?” for the tenth time. We feel bad for people who think we were indifferent when, actually, we didn’t even know we were being talked to.
For those experiencing nonstop tinnitus, we miss silence. There’s nothing like the silence of a summer night dotted with crickets chirping and frog croaking. We remember that sound of nothing, but live with ringing in our ears which varying from annoying to downright irritating.
For those with head pain – Post-craniotomy head pain is not merely a headache. Finding energy to compartmentalize pain and continue with life can be exhausting. Medicating to the point of less pain leaves us exhausted or downright unconscious.
For those with dizziness or balance issues – We miss window shopping as we can’t walk forward looking sideways anymore. We find ourselves in an awkward pile on the floor more often than in the past. We laugh it off, but it can be scary.
Recovery is an ongoing process with ups and downs. For anyone for whom those swings have not stopped, support and encouragement from other ANers in support groups is priceless. Acceptance and love from people in our lives is immeasurable. We delight in normalcy. Thank you to the people in our lives for listening. Not trying to fix the unfix-able but for providing constancy. Thank you for letting us feel sorry for ourselves on occasion and then pushing us to see the good in our lives. Thank you for reaching back as we reach out.
Fear and Acoustic Neuroma Brain Tumors
Fear
Fear is a huge four letter word. Anyone going through a medical crisis experiences fear. It fills our minds when we get that first hint that something is wrong. We fear pain, death, and change.
Fear triggers our autonomic nervous system – what controls our bodies below the level of consciousness. This effects our heart rate, breathing, digestion and even perspiration. Autonomic functions are involuntary but work with voluntary control in the somatic nervous system. Wow. That sounded technical.
What it means is that we are not fully in control of our reactions. So when we feel scared, it’s ok. For some that means dry humor. For others it means prayer and meditation. For some it means curling up in a ball and for others it’s loud and screaming. As much as we appreciate the support of the people in our lives, only we will experience what we live and feel.
Fear is something that Acoustic Neuroma survivors know the meaning and feel of. I sure felt it. At first it was rather abstract and distant. I knew something was going on in my head and my mind raced between “it will be nothing” and “I’m going to die.” That is a very wide range and felt dizzying.
Each step of seeking answers to my symptoms required me to expose more data to my family. There was a point when I said for the first time out loud that I might have a brain tumor. I felt almost silly for worrying the people in my life but could no longer keep it contained in my imagination.
When I was told “You have a brain tumor”, fear took over my body such that I spent all my energy trying to control myself. I tried to not shake, or cry, or stammer, but it happened. I wanted to speak but words would not come. My mind raced with questions but my mouth quivered. Everyone is different, but we all fight that balance of voluntary and involuntary when we hear the word officially. Telling my family and friends felt surreal, as did all planning for treatment. Fear ranged from controlled worry and fascination to the desire to escape my body.
Sitting on a gurney in a hospital gown brought restlessness. I prayed even as I looked around the surgery prep room and watched other patients being rolled to their destinies. I wanted to be unconscious. As each medical professional did their part to prep me, surgery and its outcome was creeping nearer and slower. Having my doctor’s initials scribbled behind my ear raised the hair on the back my head. Entering the operating room was cold and noisy. I heard metal on metal as the instruments were prepared. I felt peace. It was time. I put myself in God’s hands and went to sleep, fear put aside for the moment.
Waking up brought new fear. The inability to escape pain brought fear that I had no energy to acknowledge. Each unpredictable step of recovery giving no definitive answers to the future was terrifying. Only when I learned to accept that I’m living “only in the moment that I’m in” was I able to gain the gift of living and not fearing.
Lessons Learned – The Power of Pet Therapy
Paulo and Gina
Warning – this one is an emotional, tearful tribute (and necessarily long)
If you’ve had a pet during a significant event in your life, you understand how they can be an integral part of healing and recovery. I’ve always had animals in my life. With a shorter life-span than us, we learn the importance of loving but also moving on. I’ve experienced the incredible bond that one can have with animals. My pets have known me, sensed needs, provided comfort, and demanded at times that I think about the simplicity of life through their silly games and nonstop love of play.
At the time of my brain tumor diagnosis, I had two Italian Greyhounds (the toy versions of the big racers) and one half-Siamese calico cat named Gabby. The dogs, Gina and Paulo, were always goofy and clumsy as they ran around the house and jumped all over me regardless of where I was sitting or standing. They ran at incredible speeds through the backyard and stopped, panting and happy. They had a tendency to take over the bed and at times I would wake to find myself clinging to the edge of the bed as they stretched out. Gabby tolerated the rest of us living in her house and would run down the hall howling if she was offended by anything.
When I came home from brain surgery, I had very different pets. I’ve never experienced the love, camaraderie, and the responsibility of pets as much as I did when I was recovering. When I came home, they were happy to lay for hours on my bed, keeping me company. With NO demands. They intuitively knew that something was very wrong with their person. (We do belong to them as much as they to us.)
I was in raw pain and apprehensive of their usual zealous natures, so we kept them away from my bed the first night. It turns out that I had nothing to fear. They knew. When they were allowed into my bedroom, they slowly hopped on the bed and did belly crawls to my side. There they laid for hours and hours. I found great comfort in petting them and having their company. Paulo, the goofier of the two, became the most protective, warily eyeing anyone who entered the room and refusing to leave my side.
As I started to get up and around, they gave me responsibility. It was hard to do nothing more than exist in pain after having a very busy lifestyle. I couldn’t leave the house without assistance from family, a cane, and a driver. However, at home my pets forced me to move and to care for them. They helped to establish a routine. They made me laugh. They made me feel loved despite my losses. They sensed my pain and changed energy with their close companionship.
As I healed and became more independent they once again demanded walks in the woods where they sniffed every scent on the ground as I lifted my head to inhale air that was crisp with pine and wood. We would take breaks and I would watch their attentive faces and alert ears. I saw pleasure on their faces that left me no choice but to smile, knowing that things would be OK as long as there was one more tree to mark. They made my new life meaningful and manageable. That was almost six years ago.
A couple years ago, I had to say goodbye to Paulo because of epilepsy after one too many seizures. Last week I had to say goodbye to Gina as kidney disease once again gave me no choice. The house feels empty as I look at Gabby and say, “Well, Gabrielle, it’s just you and me now.” She’s clearly mourning the loss with me by sticking closer to my side than usual.
I can say thank you for the companionship that I had through the most challenging time of my life. I’m honored to know that when the time came for their last heartbeat, I was there, standing strong for them as they had for me. I wondered at the fine line between life and death as I kissed their still bodies one last time and walked away with a heart full of memories.
Gabby
My First Attempt at a Book Trailer
This is tricky from mobile devices, so if you don’t get right to the video, search YouTube for Sally Stap (Sorry, technical issue)
Lessons Learned from Brain Surgery – Depression
It is accepted by all that a brain tumor is a “disease” that warrants attention as well as acceptance. Whether one has surgery, radiation, or close surveillance until/if treatment is necessary, their life has changed when hearing the words, “You have a brain tumor.”
Just as real for Acoustic Neuroma patients is the very common outcome of Depression. It is rarely discussed as freely as the “thing” growing in one’s head. It’s common to hear:
“It could have been worse, right?” Well, that’s helpful.
“Aren’t you just happy to still be alive?” Alive, but different takes adjustment, grieving, and acceptance.
“Why can’t you just get over it?” We ask ourselves that too sometimes, just before we walk into a wall, put drops in our dry eye, or grimace when seized by head-pain.
“Post Traumatic Stress Disorder from planned brain surgery?” Yes, it is possible. If one’s life has been suddenly and dramatically changed, PTSD is possible. Life looks different when you can’t do things that used to be a no-brainer (pardon the pun).
“Traumatic brain injury doesn’t result from skilled surgeons who delicately enter your skull does it?” Yes. Surgeons are skilled and they can do everything perfectly, but the brain is a delicate entity that hates intrusion.
Depression is like a blanket. Sometimes, it comfortably surrounds you and makes you want to stay under forever, curling up in isolation. Sometimes, it stifles and makes you want to squirm and push it’s itchiness away as you crave company. However it fits or feels, depression is real and a common issue following brain surgery.
Life has changed, for most, in ways that cannot be measured or even explained.
So, what do you do about it? Talk to family, friends, and professionals. Sometimes medication is necessary. As unique as each Acoustic Neuroma tumor is, each emotional outcome is similarly unique. Finding a community in your area or online brings camaraderie and smiles of understanding.
Acceptance of the “new you” is a process that does not happen overnight. Like the tide coming in and out from the ocean’s shore, waves of depression can come and go. Waves of acceptance come and go as do feelings of frustration with any limitations that may linger. Sometimes you don’t recognize the blanket of depression until it has lifted – even a bit.
Time is a great healer. Finding the patience for time to heal is not always easy for AN survivors or the people in their lives. Recognition is the first step. Not being embarrassed by something beyond your control is another step. Pulling it back into your control is the biggest step.
My ongoing advice is “inhale, exhale. . . ” and don’t hesitate to ask for help.
Radio Interview Friday!
I will be on Voice America’s internet radio show, “Speaking of Health”, hosted by Dr. Michael Kudlas this Friday, May 16 at 1:00 pm edt.
The URL is below. If you can’t listen when it’s live, it will be available to replay afterward.
http://www.voiceamerica.com/show/2201/speaking-of-health
Press Release:
Wish me luck. . . .