Getting Through Bad days

Please understand that the following post is not medical advice. It is not intended to treat or diagnose any issues. This is simply my experience and may offer ideas to discuss with care providers. I am not an expert , nor to I promote myself as such. I am simply a patient doing the best I can to get through a challenge that I never expected to have. 


I sill have some really bad days. Mine are often due to TBI and the depression that can folow significant brain injury. It doesn't work the same as it did before. Things impact me differently now and they are often erratic in their expression, very little in the way of specific triggers can cause them. some days are simply harder than others. Here is how I try to get through those "bad days".

1. Hydrate; dehydration makes existing brain issues worse. This is always my first step as any dehydration is unable to be tolerated by my brain and it starts to not work correctly. 

2. Get outside. Even if it is just my front porch, breathing fresh air helps. I am lucky to live next to some wilderness areas so walking is doable too. 

3. Good food. When is the last time I ate something good for me? I keep fruit and veggies readily available, sugar is good for a moment but the later crash only makes things worse. It can be fun in the moment, but payback is awful.

4. Exercise. If I haven't done it already, a 15 minute walk works wonders. 

5. Pet therapy. I lost my fur baby of 15 years in October and it has been hard ever since. For right now pictures of her and sitting in my garden where she used to sit with me can help ease things. 

6. Reach out. If I am still funky, or at any point in this whole thing I phone a friend. I may also write in my gratitude journal or write about something I am dealing with on my blog. 

I can't skip the hard stuff, it's real and it happened. Giving it space without judgement while also addressing the physical aspects can help me to get through it. I can tell you that knowing it will end helps me to get though to the point where it's a good day. I try to always remember that there are physical aspects to this. People that say things like- "pull yourself out of it" don't understand all the layers that exist. I try to give my brain and body every reason to have a good day. 

This is a good and beautiful life. it is worth living every minute to the fullest, but that doesn't mean I pretend that things don't hurt sometimes. Pain is part of my journey to teach me humility, but it is not worth choosing to live there. I encourage you, if you are struggling, to seek out the resources you need to find the space to continue healing for you. Brain injury plays a role in my life, but this is still my life and I choose what to allow to expand and grow. I choose to live and to continue learning. God is good and blesses me in so many ways. 

To my surgeon

Dr. [AwesomeSauce];

In May of 2015 you treated me for a cerebellum based meningioma tumor.  You saved my life.  I wanted to thank you for your time, attention, and professionalism in ensuring my ability to live and function on any level.

The past two years have been a journey of ups and downs as I confront limitations, face social stigma, and learn to cope with continued challenges.  One challenge that exacerbated the others is that of being able to seek and find appropriate aftercare and support.  I wrote your office in early 2016 and expressed my dissatisfaction with the follow-up care and communication received from one of your associated nurse practitioners, [hewhoshallnotbenamed].  I was put into contact with [clearandconcise] and have appreciated her candor and clarity.  The difference in care is both startling and disheartening when the two experiences are contrasted.  [clearandconcise]  is exceptional both in her knowledge and in her clear communication.  While I struggle with comprehension, my husband was able to understand what [clearandconcise]  explained, even though it varied greatly from what [hewhoshallnotbenamed]  had communicated with us at initial follow-up appointments.

Through many appointments and working with an exceptional team of professionals at [myhomeawayfromhome], I have been able to adapt to functioning at a basic and simplified level.  I am working with vocational rehabilitation to recover professionally, and with a team of specialists to recover functionally.  I have progressed through physical therapy and occupational therapy and can physically function in most of my daily life.  I continue to work with speech pathology to recover cognitive function and the layered reasoning necessary for higher levels of interaction.  I have adapted to being completely deaf on my left side and have learned to understand the origins and nature of my continued tinnitus.  I am encouraged by assessments and support from [sweetestmanintheworld], the neuropsychologist that you referred me to see.

Over this journey I have found many things; 1. A qualified and experienced neurosurgeon is absolutely vital, 2. Goals and consistent, sustained effort by the patient are necessary, and 3. Recovery is best done with a team of experienced and supportive professionals who help to identify and maintain optimum recovery.  I find that many do not experience adequate recovery services and am concerned that while focused on the surgery itself, access to such services is not utilized as effectively as it can be.  Recovery is based upon two standards; physical recovery from surgery, and then functional recovery with any associated limits and challenges of having a brain injury.  It is this second level of recovery that is currently being underserved.

I am asking for your help in educating and sharing with the medical profession that what is being experienced by patients as “normal” is far below the best interests of the patient.  Simple solutions such as appropriate patient education regarding follow-up care of functional challenges, and monitoring of that care by supervising doctors is lacking.  I understand my case is extreme, that it is not common practice for surgeons to be found through the emergency room and that most patients are referred by other professionals.  What I continue to see from the patient perspective is that the trend to disregard or ignore functional healing is common for those doctors as well.  I am privileged to associate with a variety of patients from across the world, many of whom repeatedly express feelings of abandonment, loss, and disillusionment from their initial providers.  They stop seeking help or searching for answers, leading to a decrease in quality of life and fear of follow-up care and procedures.

My surgery and recovery are a pivotal miracle in my life. Your role as my neurosurgeon remains one of my greatest blessings, my healthcare team is another.  I believe without either of those two components I would not be looking forward to a life of decent quality.  I grieve for patients who express that they avoid appointments because they fear being ignored, dismissed, or hearing of another procedure.  None of these options is ideal and all result in decreased outcomes for brain tumor patients.  The question remains, how do we solve this?

I believe that as patients and providers work cooperatively and engage in open dialogue we can improve outcomes for patients, increase functionality post-treatment, and help both patient and provider engage fully in regaining optimum quality of life.  I ask your help in educating providers on providing follow-up supportive care, and creating a team based approach to functional recovery.  I am not sure of the proper format for this type of conversation, in the social work field I would advocate for presenting at local conferences and meetings of professionals.  Maybe the answer, in this case, is to begin one office at a time.  I propose a three-fold solution.

1.       Patients are provided reviewed and approved information regarding aftercare and recovery, to be given at various points along the healing path such as 14 days, three months, six months, and annually as needed.  Correct information helps answer questions that arise after appointments are concluded and gives patients something tangible to hold on to.

2.       Patients are provided access to and information about recovery supports such as speech pathologists, occupational therapists, audiologists, and physical therapists at their 14 day follow-up appointment. It is very easy to compile information of local providers and provide such information to patients to use as needed.  Patients often do not know what questions to ask or what is even possible; by offering the information providers demonstrate patient concern.

3.       At the earliest opportunity, providers and patients must identify a contact professional who will co-ordinate all care and ensure that the patient receives timely responses for any medication and follow-up care concerns.  This provider receives release of information for all reports and appointments so as to ensure that the patient is maintaining a positive healing trajectory.  This works to allow specialty providers to do what they do best and leaves general providers all the tools that they require to adequately do their job, improving outcomes for both patients and providers.

The changes I have outlined are simple and easy to maintain, taking no more time for providers and helping patients avoid medical burnout, improving outcomes for everyone.  Thank you for your care, for my life, and for taking care of people like me.

Being Whole

I find that in many ways the body and brain and surprisingly resilient. Many challenges and limitations can and are overcome on a daily basis. You hear stories of the body repairing and healing itself, without medical intervention. Doing what it needs to do to grow, function, and thrive.

I learn so much each time I attend my rehabilitation/therapy sessions. I learn ways to stay healthy, trigger healing body responses, and diffuse stress. Learning a whole body approach after injury is vital in maintaining resiliency and continuing to have hope. Keeping a positive outlook and having hope helps both my brain and body in the healing process. Many chemicals and hormones contribute to this healing in recovery.

The brain and body require hormones and chemicals in order to perform primary functions. One of these vital components is the hormone dopamine. Dopamine is essential in the body performing at its most basic and healthy levels. Dopamine. The body produces dopamine and is able to use it in healthy brain and body function.

Dopamine production in the brain is a singular chemical because there is not only one way for it to be produced/developed. Dopamine production is possible using a variety of triggering mechanisms. The triggers of dopamine may be related to accomplishment, health and fitness, sensory experiences, and even study and discovery. For a complete and whole body approach it is best to have multiple tools at your disposal to trigger dopamine production.

Examples of triggers for dopamine production may include exercise and sleep as part of the health/body triggers for dopamine production. Lack of sleep, on the other hand, leads to lower and decreased levels of dopamine production. In the short term this can be augmented by increased triggers in other areas, over the long term it can lead to chronic stress and disease in the body. 

For me, a regular and planned approach to triggering healthy dopamine production offers the most benefit.

• Accomplishment/Achievement may include such triggers as check lists, small steps toward larger goals, screen games such as Candy Crush, and even tracking days of a particular accomplishment. A friend of mine has a kitchen chart where she tracks numbers of days her kitchen has been cleaned each night. How can you track your accomplishments? What steps can you take, or are you already taking, that help you to trigger a sense of achievement?
• Health and Fitness are triggered by exercise, defined as 20-30 minutes per day of exertion. Sleep is also a producer of dopamine production. This requires healthy sleep, in the range of at least 7-8 hours per night. This amount may increase based upon personal need. For example last year, just after surgery I slept for approximately 16-18 hours per day. I still require extra sleep in the range of 12-13 hours per day.
• Sensory Experience includes such triggers as enjoyable foods (comfort food), listening to pleasing music, pleasant textures, or pleasurable emotions. With my decrease in taste and smell I no longer desire the flavor of ice cream but the temperature creates a chill and calms and cools my brain. A brain freeze can actually serve to offer pain relief from the heat of summer. Who knew? So, I don't care for the taste but the temperature is a relief and can serve as a trigger for dopamine production.
• Study and Discovery serve to release dopamine through meditation, prayer, mindfulness, creative pursuits such as writing, drawing, painting. Exploration of self and the world around us can act to help us both stay engaged with others and ourselves. Fascinating to learn that as I work to document my experiences in recovery I am actually working to create a prime environment for healing and healthy function. Amazing.

The more I learn in recovery both about my condition and the systems put in place by the body to compensate and heal from them, well, the more hope I have for a more complete recovery for myself and others. As we learn what the body and brain are capable of we can learn ways to trigger the necessary responses and offer hope for traumatic brain injury, brain tumor recovery, and even mental illness treatment.

God is good and I feel and see so much how His small mercies have served to create an environment perfect for my healing. I am making progress past the point of previous expectation. The mind and body are capable of more than we know. What and incredible miracle and blessing.

God bless and keep you.

Avoidance

Definition of avoidance. 1 obsolete a : an action of emptying, vacating, or clearing away b : outlet. 2 : annulment 1. 3 : an act or practice of avoiding or withdrawing from something.

I am fully engaged in "the act or practice of withdrawing from something." Seriously, once summer hits it is all a game of trying to not fall too much behind. Visits from family and friends, my annual tests and exams, as well as making plans for the next three years, well, it gets really busy. So much has happened and there is a lot to update.

I am a middle aged, disabled college student.

I am enrolled in college. I am working with a vocational rehabilitation program to relearn the skills necessary to hold down a job and support others going through this challenge. I will be attending classes at a local school, mostly online, for the next two years. I am combining these efforts with my rehabilitation to help reduce my time out of the work force and am starting at very basic levels. I am pursuing an education in human resources with an eye toward working within the Americans with Disabilities Act for neuro-nontypical employees; autism and aspergers spectrum, traumatic brain injury, and post traumatic stress disorder.

Understanding and working within the framework of human resources I hope to make employability of disabled persons less intimidating and more accessible. Statistics show that while the disabled struggle with unemployment at much higher levels than the general population, despite capability, they often are model employees. They do not take as many days off of work, show attention to time and produce a good quality of work within the realm of their capabilities. I can use my 10 years of experience in working with disabilities and helping provide support, all while working within the framework needed for my limited capacities. Some skills I do not yet possess and some areas will require more healing and occupational therapy. I am focusing my next two years toward building this resiliency so that I am prepared and ready to contribute again.

Basically, I am making good use of my time to heal and move toward future goals. I am equal parts terrified and excited.

*Short note: My exams and evaluations show that I do have a 6mm residual tumor. It appears to be stable and my providers are not concerned about regrowth. I will have annual assessments to ensure that this does not change. I have follow-up referrals for neurological testing of my auditory nerves. (yay?)

Go Grey in May

May is Brain Tumor Awareness month.  Go Grey in May. The world is getting closer to a cure and every day warriors battle on. Some live with their tumors having regular scans and praying for no change. Others have violent and invasive surgeries praying that the deficits from surgery will be less than those caused by the tumor. Many live with multiple tumors. Updated research shows that 50% of meningioma tumors will regrow by 10-20 years post surgery. Constant evaluations. Regular reviews. Specialist visits. All this is part of the life of a brain tumor patient. Every day in May I will explore another aspect of this journey.

I Have a Diagnosis!

The answer is Cerebellar Cognitive Affective Disorder, in my brain, with poor information processing and retention. Cerebellar Cognitive Affective Disorder

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.

NCBI Publications

God bless you.

Morbid Curiosity: I should not have Googled that

 

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.

Grumpy Cat

Some days need grumpy cat. If you are unfamiliar with this then let me enlighten you, Grumpy Cat is an actual cat whose owner takes pictures and adds captions of what the cat is thinking. I use grumpy cat on days when nothing else will do. I enjoy his humor and sarcasm.

To see the Official Grumpy Cat, click here.

My personal favorites:

 

 

God bless you. Enjoy the good and bad days, they each have something to teach.

"Are you still in pain?"

I love my family. Sometimes this journey is so close to me and I have become so expert at hiding the effort that I am surprised when they are unaware of how much this tumor and surgery have impacted my life.  A loved one recently asked me if I was still in pain? Does my body still physically hurt from the trauma it has gone through. The answer that immediately came to mind, the answer I wanted to give, "Every damn day."

Every day is an effort to get out of bed. Every night is an exercise of faith that I can get up the next morning. Because of the intensity of the pain medication available in most states, I am also at risk for developing dependence, so I try to keep things as low and even as possible. I avoid too much sugar, too much exertion. I eat foods known for reducing inflammation and work to use breathing techniques when it gets really bad. I use Epsom salt baths, hydrate frequently and practice simple techniques like yoga to keep my mind off of the pain and keep moving forward.

On the bad days, the days when nothing works, my mind is so overwhelmed that I fall uncontrollably asleep. I can't get up, my mind shuts down. I sleep and when I wake it's a journey to start moving all over again. But I do. I stretch, put a smile on and greet the day with everything I have. It's all I have. If I stop to think about it I am overwhelmed with the hurt and loss. So, I don't always let myself think about it. I focus on small things, simple things. I move my feet, stretch my arms and start my physical therapy.

I have neck stretches I start with, they hurt like hell. The relief when the muscles are more limber is wonderful. Then it's up and with slow moments get the rest of my body going. I review my plans for the day, I rewrite the day as needed and keep moving. I take breaks, reset and use my shut-down techniques through out the day. I don't think about the pain, I accept it, but it is simply my body telling me that it has gone through a traumatic event.

In quiet moments I am grateful and I sometimes grieve. I think of what could have been, but wasn't. I think of what is and how I will build my life around the accommodations I need to take now. I know I am here for a reason. Every day I find purpose in that. I don't let the pain win, but I listen to it's message.

"Slow down. Take it easy. Rushing won't get you there any faster. Look around. See what matters now."

In the quiet, accepting but not encompassed by the pain, we are gifted with the opportunity to both embrace and learn and also to see past. To look to the future with glory and health. There is another side. One day my body will be healed completely. Muscles repaired, limber, and healthy.  Brain fully functioning and engaged. Bone regrown. One day I won't hurt all the time. For now;

"Yeah, I still have pain. Thank you for asking. How are you?"

Be Your Own Hero: HEROIC

After 10 years working to help children and families, I can barely function in my own life. I need help to get through even a simplified version of my day. I am blessed in that I have incredible support from loved ones. Neighbors, family and friends all put forth just a little effort to make sure I can make rehab appointments, keep a clean home, and see to the emotional needs of my children.

In this world, and living a half-life, it is so easy to be sidelined, forgotten, and skipped over. Living a life filled with rehabilitation, recovery, and limited activity, you can easily be missed. It is vital that you remember that you are the hero/heroine of your own story. You take back seat to no one. Being unable to do much does not mean that you are stuck doing nothing.

After two very stress filled weeks of testing and evaluation, I did something about it. I reached outside of myself and was able to participate with HEROIC, in making some kids very happy. HEROIC is a group comprised of individuals who pass both a screening and interview process. They design and maintain their own costumes and must pass a review board prior to using their costumes in reaching out to children and family events. No compensation, no money is ever exchanged. They work to represent their character in-line with branding and marketing. They have a code of not doing anything to demean either the character, or the organization.

HEROIC asks for no financial compensation as each person creates a look, passes a review board, and uses that look to make kids smile. This is all done on their own time. They attend conventions and willingly pose with kids and families. They support local library reading events or other local events to promote community, safety, and family. They respond to community requests for children having surgery, staying in the hospital, and annually help with Toys for Tots drives. You can learn more and enjoy some of what they have done by reaching out. HEROIC Inc.

As part of my review process I attended, for a few short hours, a local kids fair. Seeing the excitement, enjoyment, and hearing the laughs of the kids was a balm to my (shut away) soul. I miss helping kids. I miss so much their pleasure when you notice them. Their spontaneity and smiles while with their families. Even the reactions of some adults on seeing much loved characters brought to life brought a smile to my face. It was a joyful experience,  made better by associating with others who feel the way that I do. It was all about the kids.

I found that even with the stress and anxiety of the unknown that I am dealing with, I can bring joy to others. I can serve. I cannot do much, but I can do something. Have I Done Any Good?

I am the heroine of my own life, just as you are the hero of yours. Don't let anyone tell you differently. If it is hard to imagine yourself as the hero, be a child's hero, as much as you can be.

Nothing feels better than helping someone else smile, just because you can.

God bless and keep you.

My Hardest Day, So Far

"I can't, in good conscience, put you through this. I will contact social security with what we have, if they need more, lets meet another day and start fresh. I just can't do this to you, even though you are willing."

Todd took the day off so he could be with me. I am so grateful he was there. With my experiences working I have taken teens and youth for similar exams to evaluate performance and identify strengths and weaknesses. We knew the tests and evaluations to assess my present state would be challenging for me. I hoped to complete the exam and that results would show where my damage was done and specific deficits I am working around.

With my rehab I have done many similar type exercises. As I set to work, it became apparent that this was vastly different. I couldn't use any of my coping strategies. (My evaluator called them 'cheats'.)

"Really? I can't do that?"

"No, we need to see how your mind works without them."

"It doesn't. I don't think I can do it if I can't separate things out."

"Do your best."

That has been my mantra. Do your best. Try and see if you can do it yet. According to what Todd was told, it took me over 10 minutes to attempt an exercise that takes most people being evaluated 2-3 minutes. After relearning shapes this summer and working through using patterns for problem solving I was stymied when faced with new or irregular shapes that didn't conform to consistent patterns.

Further testing confirmed that without visual aids my maximum short term memory is two to three items, at best.  There is a difference between suspected limits and confirmed limitations. After sobbing out that I could remember the shape in my head but I didn't know how to draw it, I felt so low and stuck. I keep repeating to myself that where I am now is not where I am going to stay, but it is hard to consider how much I have to relearn. At least in the real world my 'cheats' are just accommodations.

This assessment pushed me completely to my limits. I did everything I was capable of, it was even less than I had hoped. My head aches, my neck is on fire, my voice fades in and out. I slept for three hours yesterday after coming home, and then slept for about 10 hours last night. I am still tired but my body just can't sleep any more. Easy day today. I have taken more pain meds in the last two days than in the previous month.

Overall, it was hard. Harder than I imagined to complete only one part of the assessments requested by social security. I am facing one more assessment for them and then a complete workup requested by my neurosurgeon with a neuropsychologist. I am both afraid of and looking forward to the evaluations.

I know I am missing large parts. I know things are very different. I am still grateful and floored that I retained as much language as I have and that life led me through experiences with such repetition and familiarity that I use every day. I am so grateful that my experiences in social work and with the Teaching Family Model applying cognitive behavioral techniques were such a large part of my life over the past ten years. It's how I function every day. Models for my daily schedule are based on the schedule I kept for our youth, to help them regulate after abuse, while they mentally healed. I use it for my physical mental healing. Its going to take a long time.

There it is, I have a long road. More tests. More assessments. More relearning things I took for granted. I am grateful. I am scared. And sometimes, I am embarrassed because our culture does not look kindly on the broken. I am aware enough to know how far I have to go and that some pieces will never be reclaimed. I try to hold to what I have. To hold my boys and know that for them, they just need their mom. Sometimes its hard, so I give myself space for that too.

My advice, do your best. You may not be there yet, but you can keep moving forward. God bless and keep you.

"If You Would Just..."

I know it isn't only me hearing well-meaning but tacky bullshit advice. Working in the mental health field you hear all the time "If they would try harder", "If you would just look on the bright side", "I had the same thing happen and it wasn't that bad." Anyone who imagines that this only happens with an invisible illness, let me break it to you, it doesn't.

It rarely happens, thank goodness, because I have pretty incredible friends but I have found that anytime you are dealing with a health issue, everyone's got an opinion. Most people keep their opinions to themselves, but there is always one that is so excited by the seminar, webinar, YouTube video, or article that they just saw that it is now their place to tell you how to be healed. Or to preach on the benefits of how quickly you would get better "If you would just..."

For all my Meningioma mommas and poppas out there let me say, "Go suck an egg." If all it took was a supplement, exercise, yoga, or meditation we would be healed. If the oil, probiotic, or organic food made my tumor disappear it would be gone. I still have a little souvenir making my life harder than it has to be.

Aside from having to defend my lifestyle, which is stupid, let me clear up a few things.

1. Not all tumors are cancerous.
2. Meningiomas have three basic causes; radiation, heredity, and prior injury. Possible links between the hormone progesterone are also being looked at for increasing growth.
3. Meningioma is only one type of tumor, there are many others.
4. Benign can still kill you. My tumor was benign and my doctors would not even give me a choice of care. I was admitted immediately and told it was surgery or I was going to die, I even had a general timeline of how long this would take. (They weren't talking months.)

Believing you know how someone else should live and heal is among the worst assumptions you can make. Let's review how to respond appropriately when dealing with someone disclosing health concerns.

• Them: "I have...I'm dealing with...I suffer from..."
• You: "That must be hard. Can I bring you dinner?" -or- "Thank you for sharing and trusting me. I would like to help. Can I watch your kids one day or drive you to an appointment?" -or- "Wow. I'm sorry."

See? You don't have to go any further. Empathy is looking at something from the other persons viewpoint. Telling is a big deal. The people I know don't need special treatment, they just don't need to deal with your emotional fallout on top of what they are already coping with. They need to be heard and acknowledged. That is it. Use a later time to inform yourself about their condition or talk about questions.

IF, and I strongly stress if you believe, after careful consideration, that the information is helpful and will benefit them, pass on the resource. Do not be surprised if they already have seen it and are not exactly thrilled about getting it again. You can also create a file of information to save for when or if they ever ask.

So, in conclusion:

"If you would just...show concern for who we are and express your love and support, that would be great."

Top things to not say to a brain tumor patient...

So over the past few months I have experienced some pretty dismissing comments. I'm actually amazed that people would say these things to any medical patient, let alone a brain surgery patient. I am sitting here just in awe at the lack of empathy shown to patients who literally put their lives in the hands of their providers. Not all providers behave this way and I have a pretty incredible support team, but sometimes I am shocked at how I and others going through similar challenges, are treated.

 

1. It's not that big a deal. Beg to differ. Its my life, my mind, it is that big a deal. I want to know everything and have it explained clearly as well as given to me in writing. Why? Because I won't understand just on hearing it and I will need reassurance that I am going to be OK. I don't need a pat on the head and pacification. I promise to read and review the information often, making sure I am doing everything possible to restore my life.

2. It's nothing to worry about. I am missing parts of my life, my memories. I miss my friends, and connecting fully with family. I miss going out with loved ones without planning for a siege. I experience constant debilitating anxiety as well as random panic attacks. Most people only imagine the worst, I have lived it. My own body has tried to kill me in a slow and painful way. Please don't tell me not to worry. If I worry, I can turn it into a plan. It helps me be safe, protect myself, ensure I don't lose anymore than I already have.

3. No, your tumor couldn't cause those symptoms. Really, because I didn't have that problem until I had a tumor so excuse me for thinking that A + B = AB. I'm pretty sure that loss of balance, hearing difficulty, pressure headaches, vision distortions are linked to the mass pressing on my brain. It's just a hunch, because you know, everything is regulated through my brain.

4. I don't know why you would feel that way. Um, because I have a tumor in my head, I just had surgery and might be facing another one, and something is interfering with the part of my body that regulates everything else. I can't imagine why I would be a complete emotional mess and confused about everything going on around me. I get that I look relatively healthy on the outside but should I wear a sign describing all the ways this has already messed with my life? Memory, balance, light and sound sensitivity, I can go one but it gets depressing.

5. Are you sure that that is what you are feeling? Seriously, you immediately question me about what I am going through and feeling? All I can do any more is feel. I feel sick. I feel tired. I feel scared, lonely, afraid. Isolation is my new best friend. I can't begin to explain the layers of feeling in my head every moment of every day. If you think listening to me talk about how I feel is confusing, try living through it. I'm a bundle of grateful, terrified, humbled, horrified, small, and aware of my infinite potential all at the same time. It doesn't matter how my feelings make you feel, they are mine, they are real, and I own every single one of them.

I get that, to some, our problems seem small. Brain tumor patients don't look sick, we don't always act sick. You don't see the bad days when we lay in bed crying from the pain. You don't see the struggle of getting out of bed when your muscles are screaming at you, when your vision is blurred and when everyday sounds are louder and more intense than sitting front and center at a rock concert. I hold to the empathy and love during these times. But, if I call you out for saying or doing something insensitive try to give what I say some credit. Or, at least, don't be an asshat.

Craniectomy, Not Craniotomy

"What do you mean part of my skull is missing?"

So at my appointment today we met with a new nurse practitioner; discovered a vital piece of information.

I did not have a craniotomy, I had a craniectomy. The portion of the skull removed for my surgery and the intense pressure my brain had been under necessitated leaving that portion of the skull off and closing the dura, the lining of the brain,  applying a seal over the top. No mesh, no titanium, nope something called DuraSeal. A synthetic covering that bonds over time with my skeletal tissue. Important information a little more intense than not lifting certain weight or exerting myself. A blow to my head can cause severe trauma and permanent damage. So, that sounds fun. Essentially part of my skull is missing and I am now Cousin Eddie from Christmas Vacation.

I felt like screaming that this was information that would have been useful to me six months ago. So incredibly frustrated that not all information is clear and consistent. We also discovered that I should have been having copies sent, in writing, of updates following appointments. I will not being seeing the first nurse practitioner again; I will see the second. She actually communicates clearly and doesn't blow me off or act like I am inconvenient. I know my advocate, my husband, was much happier following this appointment.

I am breathing while we wait for final results on my scans. We were also not told of a new residual tumor that had grown since my June appointment. The one nurse practitioner had reported that my scan "looks clear". Apparently she didn't bother to read the radiologist report describing the location and measurements of the new tumor. So, again we wait. Six months until my next scan, unless symptoms begin to interfere with my quality of life.

We've got this. Just waiting now. Praying and holding on to one another is where we are. Honestly I prefer the emergency surgery method, no guess work, no waiting. Warriors in our hearts every day! God bless and keep you.

 

DuraSeal

DuraSeal is a synthetic absorbable dural sealant, which can be used to support primary dural closure. As described in the manufacturer's insert, DuraSeal is an US Food and Drug Administration (FDA) approved product that is indicated as an adjunct to sutured dural repair during cranial surgery to provide a watertight closure. More recently, it has received FDA approval for use in spinal surgery. It contains PEG, a non-toxic and biocompatible polymer. When water-soluble functionalized PEG is mixed with trilysine (a small molecule amine with reactive linkages), the solutions combine to form the sealant gel that can be sprayed or layered onto the site of dural repair. The cross-linking of PEG and trilysine molecules creates a 3-dimensional hydrogel structure that gradually hydrolyzes (water gradually degrades the cross-linked bonds in a uniform fashion just like absorbable sutures). According to data provided by the manufacturer, it is cleared from the site in 4-8 weeks, which is enough time to allow healing.

Directions and precautions include its avoidance with other hemostatic agents or sealants and the requirement to achieve adequate hemostasis before its application. The DuraSeal manufacturer's insert also includes “contraindications, warnings, and exclusion criteria” concerning its use. One major warning states, “Do not apply DuraSeal hydrogel to confined bony structures where nerves are present since neural compression may result due to hydrogel swelling. The hydrogel may swell up to 50% of its size in any dimension.” Contraindications to its use include a history of allergy, penetration of an air sinus, renal/hepatic/immune dysfunction, head trauma, and infection; it is also to be avoided with hydrocephalus, a ventricular drain, or lumbar drain.

Pioneering Awake Brain Surgery

I recently was privileged to read an article penned by a writer given the opportunity to be at the forefront of brain research, awake brain surgery. Amazing things are being done and this article was both morbid and personal for me, I have color pictures taken during my surgery. They are amazing. I have actually seen images of my brain. Its a little surreal when you consider that the very thing interpreting the visual image, is the thing that the picture is taken of.

Prior to the surgery there is a meeting and discussion of why awake surgery is important.

"It was Marsh who kept the conversation going during the dinner. He explained the awake craniotomy procedure, saying that for a neurosurgeon, it is a constant temptation to try to remove the entire tumor, but if you go too far, if you remove too much, the consequences can be severe. It may lead to full or partial paralysis of one side of the body or other functional impairments or personality changes. When the patient is awake, this allows the surgeon first of all to determine where the dividing line lies, and second, to observe the consequences of the procedure directly and immediately, and stop before any serious damage is done."

After this the author is given time to think about what is going to happen before appearing at the hospital the next day.

"To my horror, the operation was in progress.

The silence was total. The single focus of attention was a head clamped in a vise in the middle of the room. The upper part of the skull had been removed, and the exposed edge covered in layer after layer of gauze, completely saturated with blood, forming a funnel down into the interior of the cranium. The brain was gently pulsating within. It resembled a small animal in a grotto. Or the meat of an open mussel. Two doctors were bending over the head, each of them moving long, narrow instruments back and forth inside the opening. One nurse was assisting them, another was standing a few yards away, watching. A whispery slurping sound issued from one of the instruments, like the sound produced by the tool a dentist uses to suck away saliva from a patient’s mouth. Next to us was a monitor showing an enlarged image of the brain. In the middle, a pit had been scooped out. In the center of the pit was a white substance, shaped like a cube. The white cube, which appeared to be made of firmer stuff, was rubbery and looked like octopus flesh. I realized that it must be the tumor."

Terrible Beauty of Brain Surgery

What an amazing article. I am in awe of the brain and its functions. I am grateful to have the providers and caretakers that I do. God bless and keep you.

Bills, Statements and Explaination of Benefits

So much paperwork. I constantly amazes me at the amount of documentation required for my case. The case notes, updates and reviews are enormous. My personal medical file has gone from reasonable to unbelievable. I have a briefcase that holds my files, MRI's, and medical payment information.

With brain surgery you can pretty much expect to either be on a payment plan or on financial assistance. Keeping track of payment dates and ongoing care is pretty fatiguing. Sometimes I pay a bill and then check to see later if I double paid. For one event there is the basic bill, then an explanation of benefits from insurance, then a letter or receipt for paid bill. Not only that but I also get the fun job of maintaining copies of current treatment plans. Why, you may ask? Well, I see five different professionals who work on my case. This does not include various radiologists and test results that I may be sent for.

Can we just take a reality check. I have brain surgery in May of 2015. I have brain damage and am still plagued with deafness, cognitive overwhelm and sensitivity to light and sound. Trying to organize this information, let alone try to understand all that is going, on wears me out. That is a job in and of itself.

I admit I sometimes just do what they tell me to because I can't keep it straight. In this I feel out of control and very vulnerable. It is not a comfortable feeling. It takes me days to work through the anxiety associated with trying to understand. So, I put it away until next month. When I will get to do it all over again.

Oh, and the best part- my follow-ups are next month. More appointments

 

and payments on the way.

Almost Normal

Some mornings I wake up and feel so much like myself that the surgery and tumor are all a big dream, then I move.

Oh... yeah...

That did happen.

It wasn't a dream. It's real. I sat and cuddled with my boys today and realized that they don't see me as different. When I hold them, when they are in my arms, I am just mom.


Constant. Unchanging. Their safe space. A refuge from the challenges and scrapes of childhood.

"Mom, I need a Band-Aid."

"Mom, can I have breakfast?"

"Mom, I wet my bed."

This I can do. In this I can be normal. "It's ok. Yes. We'll take care of it." No pressure to do more or be more than I currently am, and I can do this. I can get up in the morning every day and be there. I can do my stretches, complete my PT and OT exercises, and get a Band-Aid or change a bed with my son.

I can be almost normal. Almost me. Despite everything that has happened and my changed abilities, I am still in here. My words get trapped. It takes ages to do things that are simple, if I can even do them anymore. Despite all that, I still exist and at least to my children, its like nothing is different.