A personal journey beginning the day I was rushed from the Emergency Room and admitted to the hospital to be treated for a large brain tumor. Through this life experience I try to share lessons I have learned and my faith in God is a large part of that. Some images can be graphic in nature, dealing with injury and subject matter can be triggering for some readers.
So, for you that know me, I love music. All music; Classical, soul, gospel, country, rock, pop, punk, alternative, and even disco. I have spent much of my time, in years past, listening to music, attending concerts, and simply enjoying the way that music reflects emotions and life.
Since surgery, sounds have become incredibly painful. Extra noise, of any kind, is just that, noise. It hurts. I get headaches, become easily overwhelmed and have trouble finding the pure enjoyment that music used to hold for me. That is, until this week.
The Beatles offer such a simple melody that while overhearing some songs the other day I found I could relax. I caught myself nodding my head, singing along (off-key), and generally just being in the moment.
So, the simple melody works. What a blessing. Not for everyday, but for now its a place to start. A place to relearn how to take in music and not become encompassed with all the "stuff" going on around me. Tolerances for other music remain low. My next project will be working on Mozart, is the next step forward in relearning to enjoy classical music. I have missed this part of my life.
My personal favorite bits include such information as:
"Impairments of executive function include problems with planning, set-shifting, abstract reasoning, verbal fluency, and working memory,and there is often perseveration, distractibility and inattention."
"Deficits in spatial cognition produce visual–spatial disorganization and impaired visual–spatial memory. Personality changes manifest as blunting of affect or disinhibited and inappropriate behavior. These cognitive impairments result in an overall lowering of intellectual function."
Additionally for some of my dear ones who struggle with being told that symptoms are imagined or there is no reason to have such changes:
"Underdiagnosis may reflect lack of familiarity of this syndrome in the scientific and medical community. The nature and variety of the symptoms may also prove challenging. Levels of depression, anxiety, lack of emotion, and affect deregulation can vary between patients."
Treatment methods include Cognitive Behavioral Programs. (I had used a cognitive-behavior program for 10 years in a treatment model prior to my diagnosis.)
"The current treatments for CCAS focus on relieving the symptoms. One treatment is a cognitive-behavioral therapy (CBT) technique that involves making the patient aware of his or hers cognitive problems. For example, many CCAS patients struggle with multitasking. With CBT, the patient would have to be aware of this problem and focus on just one task at a time. This technique is also used to relieve some motor symptoms."
There is no cure. I won't wake one day and magically be better. I, and others like me, fight to recover from our injury and adapt to issues for the rest of our lives. Increased fluidity may follow repeated practice of coping skills and may improve over time. There is nothing that says that all I have is all I will ever have, but the body is limited in how much and how completely it can heal. No one can exactly predict what this is, I intend to push as far as I can go.
Neuropsychologist update: So, my issue is that I am, shall we say, "Buffering".
With my results today we discussed where my issues are. Basically the brain filters amazing amounts of information every minute. This occurs at a rate of approximately 11 million points of data per minute. This information is received through the Senses and relayed to the Attention/Filter part of the brain. From here it is taken into the Short Term Memory ( to be later transferred into the Long Term Memory, if repeated.) Memory is taken and applied in the Thinking part of the brain.
My cerebellum and all left cranial nerves were affected by my tumor- essentially the filitering system is broken. I function lower than 86% of people when it comes to information absorbtion and intake. I cannot filter between vital and garbage information. Therefore I process slowly and only absorb so much before I shut down. These issues were most likely not caused by any surgery; but by the tumor, its size and location. I was informed that it was a blessing to have the tumor be a meningioma because if it had been comprised of brain tissue, I would have a very different story.
Yup; there it is. My brain filter/attention works at a level of 14%, meaning
that 86% of the population thinks faster and focuses more than I do.
I asked how I was able to function the way I did, his answer "You faked it." OK, then. Yeah, I probably did. I focused on other people first and distracting myself with that was a great way to pretend everything was fine while my mind worked in the background trying to catch up. He says I've got a great team, they are doing exactly what we need to do and he will see me in a year.
Good to know that my symptoms were not imagined. Good to know I have reason for struggling. Better to know there is something I can do about it. Ask questions. Follow up. Make sure you have an advocate and use your primary care doctor as your team leader. Let your team talk to each other. They all have a piece to the puzzle, putting it together can give you a clear picture of what to do for your care. You've got this!
God bless and keep you.
(My brother commented that working with dial-up service can be frustrating. So, I'll just sit here, buffering. Thanks buddy!)
Sometimes that is all it takes and all you can do. Keep things simple and move forward as you can. I have found that the journey of life is not won by big events, but by small daily choices. It is these seemingly small decisions and choices that shape our life and character. I am sometimes amazed at what can be accomplished by staying centered on your goals and making small efforts, on a regular basis. You can and will achieve more than someone making a big push or effort in the moment.
Each day I choose. I choose to get up, move, and do. I am and can be an influence in my family and neighborhood. I can't do everything but I can do something.
You can choose to move forward by making small daily choices.
Many set goals at the beginning of the year and push for a short time to meet them. Then, tired, they burn out. Making change is not about doing it all at once, that is too much physically and emotionally. We are tied to our habits and behaviors, they developed because on some level it worked for us. You cannot just decide to cut away part of yourself. There is a process of letting go. With my surgery I did not go through this process prior to having my tumor removed, but I did emotionally go through the grieving process later.
No one escapes the grieving process. Giving yourself time to recover and regroup can be a necessary part of change, as long as you hold to the truth that you are only regrouping and you will re-engage. Retreat, Recover, Re-engage
Baby steps forward are doable.
I have begun by making big goals and decisions about what I want my life to be. I know some things will have to happen. I will have to relearn to drive. I will have to go through job retraining. I will have to relearn how to cook, work, and live with noise and stimulus.
I work to break these down. I have big goals and break them down into small mile-stones achievable each month. (Sometimes the timelines need to be adjusted based on progress or lack of progress.) I them break the month down into weeks and finally individual days. Activities with the same level of involvement/intensity are balanced out by smaller and simpler activities. Rest periods are used regularly, helping prevent over work and shutting down.
I keep a yearly calendar. On my desk is a monthly calendar where I track my monthly goals. On my wall is a daily calendar where I write my planned/hoped activities for each day. Included on this are my menu, rehabilitation appointments, and housekeeping needs. (Sound like a lot?)
At this point my individual planned activities are quite simple. For example; today I will work on visual tracking during my walk and physical therapy, I will practice using the iron to make a straight line, and I will work to follow a new 4 step recipe to make dinner. While engaging in these activities I will work to maintain quiet levels of soothing background sounds, increasing my tolerance for auditory stimulus. At any point where I feel increased anxiety, I will rest, reduce noise, and recover. I will then choose to get up and continue where I left off.
Through small steps I will meet my goals. I plan to live my life and engage fully in my family and community. Nothing is stopping me but me, and I can learn to work around that too.
Make goals! Move forward. Even if they are baby steps, keep going in the direction you want to be and you will get there. God bless and keep you.
Roadblocks and delays where I look. Hope and possible improvement offered and then more delays and barriers put up. It amazes me that resources made to help the disabled are so difficult to navigate and comprehend. Locating help with medications, co-pays, explanation of benefits, social resources; nothing is collected in a reasonable or accessible manner. So, here you go:
I rely on help from well people and trust the office staff and professionals to be able to point me in the right direction. When I can't understand the next step or if the ball is dropped, I am lost. Completely unable to get myself out of limbo. I wait and work. I feel like I am hitting plateaus with my care. Then, there is the guilt.
I try to accept that it is there, but I also resent it. I worry about what my sons will remember. Will they remember mom that couldn't play with them or run with them? Or, will they remember that mom didn't quit or give up and pushed them to do their best?
Well, those are questions for another day. Today, I will do what I can and try my best to be aware and engaged with my boys. They are everything. I love them. God bless and keep you.
I just got out of my neuropsychologist appointment.
Relieved, hopeful, and ready to go - after I take a very long nap.
The neurological testing was extensive, but given in a watered down version so as to avoid wearing out my system. We reviewed visual skills, memory, tracking, spatial awareness, and so many other things that I am amazed at the ability our minds have to filter out so much accessory information on a daily basis.
In discussing overload, I found that not only do we have our 5 basic senses, we additionally have other senses. Sense of time, sense of space, sense of reality, sense of awareness, and many more. The mind is bombarded with millions of pieces of information each minute and we miraculously sort through all of that to form thoughts, plans, and behaviors. My sorting system is broken and gets jammed up with all of the daily stimulus.
Removing and reducing stimulus has been the plan. Now we are going to slowly increase stimulus, increasing my tolerance for functionality. My team and I will work together on a plan that will support function and make use of coping skills such as touch/memory techniques to allow for the most efficient function possible.
I was encouraged to pursue nerve testing for my hearing loss. Essentially it was explained that when one is determined to increase physical strength, you don't sit on the couch waiting for your muscles to grow. The mind operates on the same principle. After trauma, weak or damaged nerves and functions can be improved by careful and focused work. A team approach helps to ensure the fastest road to recovery possible and waiting to "see what comes back" is not an option for me. I have never been a "wait and see" person. I am "give me a direction and watch me go".
I now have hope for a more focused direction.
My friends also on this journey; if your doctor has told you "I don't know why you feel that way." or "No, that wouldn't happen." Request a referral to a neuropsychologist. Request referral to speech pathology, occupational therapy, physical therapy. Do what you need to do to ensure that you have a successful recovery. Your team works for you. You are not inconvenient. You are not wrong. You feel what you feel and you are the patient, therefore, you are the priority. Stand up and ask for what you need to be successful.
I have a sense of morbid curiosity and quirkiness that I feel blessed to have retained through all of this. A sense of the ridiculous can help in dealing with the random ups and downs of good and bad days. It serves to help me understand a small part of what is happening in my brain and it is fun. Then there are the times that all I can say is...
My curiosity has led me to trying to locate exactly where the midbrain is. This was the location explanation I was given at diagnosis. Additionally the neurosurgeon has notes describing how they retracted my brain to access the tumor during surgery. I was trying to figure out how exactly this was done. I know that my head was glued, face-down on the table. I know that my sternocleidomastoid muscle was cut to access the area; this muscle runs from behind the ear to the center of the clavicle (basically over half your neck). Additionally the tumor wrapped around all of my left cranial nerves and was pushing on them. My surgeon had to carve the tumor away from them and yet not cut or damage the nerve itself.
I got curious and I looked it up. Bad idea. Stop reading now if you don't want to know.
So, the midbrain is a small structure located at the top of the brain stem. Yes, you heard right, I had a brain stem tumor. Um, what? Patients with large tumors in this area are usually dead or non-functional. Damn it. No wonder I am struggling with so much stuff. Additionally they estimate that 50% of the neurons in your brain are found in the mid-brain. (This is where I went to go dry heave a little.)
After recovering for a bit, I then wondered exactly what it means that my nerves were impinged by the tumor. I can do a lot, on good days I can look and appear to act normally, as long as I rest. Other times I am barely functional and can not respond or take in any stimulus or information. Out of curiosity, I went looking. (Why do I do this to myself?)
Let me break it down for you.
V. Trigeminal nerve- numbness, difficulty chewing at times, control of facial muscles. Hearing issues on the left side.
VI. Abducens- not too much trouble.
VII. Facial- lack of taste, facial muscle control, left side palsy (since corrected).
VIII. Vestibulocochlear- hearing loss, disconnect between my head and trunk during movement.
IX. Glossopharyngeal- hearing loss left side, lack of taste and sensation, loss and struggle with swallowing reflex.
X. Vagus- problems with speech, loss of speech, stuttering, difficulty forming words; compensating for poor muscle control with recruitment and surrounding muscles leading to fatigue. Cough reflex- my surgeon explained that my 4 month cough leading up to surgery was the first sign of a serious problem. It was caused by the pressure on the Vagus nerve from the tumor.
So, in addition to the nerve impingement which interferes with many daily functions the midbrain was being pressed, such that 50% of my neurons were adversely affected. Memory and cognition loss can be attributed to the pressure on my frontal lobe from loss of room and decreased levels of cerebral spinal fluid, which surround and protect the brain.
The more I learn the more amazed I am that I am here. I have retained much of who I am. I can relate to others and interact with my loved ones. I am more emotional and express myself more freely. I have had to go through some emotional healing and development, but what science says should have happened didn't. For that I will be eternally grateful. I am not dead. I am not non-functional. I have not lost who I am. I can love and be loved and those are amazing gifts.
God is good. He has us in the palm of His hand, and don't Google it if you don't want to know.
This is my tumor, tucked under my brain, it was grey and covered in blood vessels. And that, the part retracted is my brain. I have one! Not everyone can say they have seen their brain.
This is after some of the tissue had been cut away. As my doctor said "coagulate and cut, coagulate and cut." It took hours longer than planned and I am eternally grateful that he was there and willing to do the work.
There is a lot going on in the field of research and study. Some of my friends from around the world are becoming involved in studies and researches being conducted. Books are being released about the options of treatment. The blood-brain barrier, which prevented many existing treatments from being used with brain tumor, is being explored. Natural and artificial treatment methods and forms of tumor control are being evaluated as options. Some have even found ways to use a bodies own DNA to create tumor killing cells.
All the articles and information is, at times, both exciting and overwhelming. With many unknown causes and much still to be learned, it may take all types of treatment to offer a cure for the conditions many live with daily.
"Doctors at Sunnybrook Health Sciences Centre in Toronto, Ontario, Canada, have noninvasively penetrated the blood-brain barrier to deliver a chemotherapeutic agent directly into a patient’s malignant brain tumor."
"Through OCT mapping, surgeons can differentiate cancerous tissue (red) from healthy tissue (green). "
Harnessing the DNA Immuno-therapy ' With immune therapies, it turns out you're just engendering the immune system," James Graham Brown Cancer Center's Dr. Jason Chesney said. "You're training it to get activated against the cancer and a lot of the immune therapies we use, we don't have to continue. We can give them for three or four months, and then stop and watch the patient." '
"High intensity focused ultrasound or HIFU is a type of cancer treatment. Doctors give the treatment using a machine that gives off high frequency sound waves. These waves deliver a strong beam to a specific part of a cancer. Some cells die when this high intensity ultrasound beam is focused directly onto them."
"In 2013, the University of Leicester conveniently published just before Christmas that has rekindled this theory. According to their press release, the Omani government-funded research has (for the first time) uncovered that frankincense has the ability to target cancer cells in late-stage ovarian cancer patients. And this all appeared to be due to AKBA (acetyl-11-keto-beta-boswellic acid)."
'Medical marijuana is gaining acceptance, but could it even help kids? Dr. William Courtney has seen it happen, and on Friday, told HuffPost Live host Alyona Minkovski about it. Saying he was "quite a skeptic 5 or 6 years ago", Dr. Courtney continued that "my youngest patient is 8 months old, and had a very massive centrally located inoperable brain tumor." The child's father pushed for non-traditional treatment utilizing cannabis. "They were putting cannabinoid oil on the baby's pacifier twice a day, increasing the dose... And within two months there was a dramatic reduction, enough that the pediatric oncologist allowed them to go ahead with not pursuing traditional therapy."'
So much reading, but so many different areas and forms of care and being created that offer hope and the possibility for life. Being given a life sentence is devastating. it changes you in many ways. Even if you are blessed to have what is considered a benign tumor, it still changes you and affects your very life. Some wait, with no possibility of healing or prevention, and watch as they worsen and lose who they are. Loss of executive functioning skills, memory, emotional management, even personality changes are common. Seizure is a constant risk. Hope offers a chance for more. To move beyond the limits of the mind and let the body do what it does best, heal itself.
God bless and keep you. We live in exciting times.
It is so easy to ask and not as easy to find an answer. Why? Why her? Why me? Why, God? Why did you allow this to happen to me?
So many conflicting thoughts of fear and helplessness. In the center of all of this came an answer. (One I believe must be written down because in its simple vastness and all encompassing concept, I will not remember it tomorrow.)
God does not cause circumstances.
Wow. He does not create or desire for us, His children, to experience pain and trauma. No parent would. However, as a loving parent He must allow us these experiences. Allow us and the nature of Life to create circumstances that need to be overcome. The struggle then, is what allows us the opportunity to learn and grow closer to Him, Our Father. Let me restate that. God does not make bad or good things happen. What He does is act in line with the laws of Life to allow our experiences to propel us to greater heights of existence.
Why then pray to God? If He did not create our circumstances what can he do? He can, through laws of Justice and Mercy, the laws that govern all force in the universe, act upon our hearts and minds, allowing us to triumph. He can offer ideas, suggestions, promptings, personal revelation, whatever we require to overcome. He can act upon the hearts and minds of those around us to offer aid and support in times of deep struggle. He is a loving parent reaching out in times of trial.
At times these trials and experiences are self-imposed. At other times, they are simply the facts of living as temporal beings. We are subject to the law of Death. We become sick, make mistakes, and sometimes misjudge events. We are mortal and as such we die. We are hurt. We hurt each other. Victims of abuse and trauma did not cause their circumstances but are still subject to these same circumstances. All living in this mortal and temporary existence have trials, experience pain and suffering. This is not the nature of God, but is the nature of Life.
God acts to lift us to overcome circumstance, that through these experiences we are able to draw closer to Him.
God does not intend for this suffering to be the end word. He understands, better than anyone the pain of loss and betrayal. He understands and hears the deep and desperate cries of our hearts. He knows the pain of sin and addiction. Each of these temporal experiences can act to create within us a desire for more. The strength to find Him and never let go. God does not intend for us to struggle alone.
He is there. He is always there. He has encircled us with His angels ready in times of trial to hold us up. None of us needs to got through this journey alone. Jesus Christ, our Savior, has already walked the path alone, that none of us needs to. None of us is alone and we do not need to feel alone, because Jesus has already broken the Law of Justice. Allowing God, in his wisdom to offer strength and support in our time of struggle.
Some days I know little beyond now. Today, after the loss of another brain tumor sufferer, I was struggling. In my heart and mind I prayed. I asked and this was my answer.
"I did not make this challenge for you. You have this challenge as part of your life. The cause does not matter, what you do with it does. What will you do with the challenge you have been given? Where will you turn? How will you allow this to act upon your heart and mind? I am here. You are not alone. Now go, do what needs to be done."
I don't have scripture references or prophetic counsel. I have had one small verse brought to mind in all of this. 2 Timothy 1:7-9
"For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind. Be not thou therefore ashamed of the testimony of our Lord, nor of me his prisoner: but be thou partaker of the afflictions of the gospel according to the power of God; Who hath saved us, and called us with an holy calling, not according to our works, but according to his own purpose and grace, which was given us in Christ Jesus before the world began."
Through Christ, my experience can serve a purpose in my life and in the lives of those I love. I can, according to Him, ask for and receive the support I need to meet and match this purpose. He is there on the bad days and the good days. The days I fail and the days that I triumph. He is there to offer healing to self inflicted wounds as much as wounds earned through living a temporal life. God is there. He will take my circumstance, and if I allow it, will work upon my heart to make this a life of miracles.
My prayer for you, let Him in. Let Him hear your cries and I promise He will not leave you comfortless. I don't know what tomorrow will bring, but I do know that in Him and through Him, my love and family will be Eternal. God bless and keep your heart safe in your trials. He is a loving father who desires you and me to triumph. He loves you. May you feel and know of that deep love.
With the attention since the State of the Union from Vice President Biden, more focus has been given to the causes and solutions to brain tumor/cancer research. Sadly this comes too late for some. Another strong lady passed last night. She couldn't hold on any longer despite advances being made in how to access and cure these very life affecting tumors.
No consistent trend can predict the cause or solution. No comprehensive list of symptoms can tell sufferers when to be tested early. Even diagnostic tools are concerning because it is a major event to have a biopsy done. My surgeon simply removed as much of the tumor as possible and sent a piece for evaluation.
The sadness weighs on us all as we are a small community, a few in each city spread over the world. Not loud, many of us have sound sensitivity. Not vocal, speech is difficult as we stutter, misspeak, forget words and lose track of conversation. Not in the public eye or making big waves because our functionality suffers. So, we simply fade away into obscurity with only our loved ones aware of the loss of light to the world.
This song came to my mind today. It is a song that reminds me that I am not alone and we are all the poorer for losing a light in our world.
Amy, my friends, those who have lost loved ones, remember "When you're alone, you're not alone. Not really alone."
