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.

"Please, explain."

It drives me nuts when people ask me what it feels like, why I do things a certain way or why my mind works a certain way. Living it is hard enough. Trying to explain is like being blind and trying to describe a sunset. I have no point of reference for how this makes me feel or what it feels like because it just is. Living my life now is enough of an adventure.

(started everything.)

 

My life as it now stands.

 

I still have to keep writing it maintains my sanity.

 

 

and lastly...

 

Get the picture?

"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."

Unlimited Sides

Overheard this past week: "So, not only do we get an order of brain surgery for our tumor. But we also get unlimited sides, awesome."


Barometer Head-
I have discovered another joy, side effect, that craniectomy and craniotomy patients deal with. Barometer head is a term used to describe the overwhelming and painful feeling of pressure from changes in the barometric pressure; storms, moisture, etc. I had hopes of missing out on this particular joy because I haven't had any symptoms so far. Nope, it attacked with a vengeance yesterday and hasn't let up. Moping and eating my feelings right now. Distraction is good.

Answers; Some Good and Some Not So Good, but Livable

We heard from the neurosurgeons office. Relief!

I do still have a brain tumor. The tumor is a residual tumor that has been hiding and is stable. It was missed at my 1 month follow-up scan by the nurse practitioner. My neurosurgeon has been tracking it. (Communication people!) He is satisfied that it is stable, not growing, and no surgery is indicated at this time. We do not need a biopsy. Because it is a left over portion, we don't need to fear cancerous regrowth because it is not new growth.

The tissue used to close my craniectomy is something called DuraGen. It is more dense and can incorporate itself into the surrounding tissue, unlike DuraSeal. There is no reconstructive surgery needed. It is not as strong as my skull bone would have been, but it is sufficient for most daily activities. Again, clear and appropriate communication would have helped to decrease huge amounts of anxiety.

Referral to a neuropsychologist will follow with attention being given to my apparent lack of progress in some areas, as well as a provider more able to answer functional questions and concerns.

In summary: No surgery at this time or the forseeable future. Communication would have helped to clear up a lot of our concerns. Needless to say, I will not be seeing the supporting nurse practitioner from my first visits again. All of my case information has been transferred to S, and she will now conference directly with my neurosurgeon. If you wondered, the doctor has been made very aware of the concerns created from lack of communication and professionalism of his last provider. Now, off to write a very appreciative "Thank you" for the answers we received as well as the referral for support.

DuraGen

The DuraGen XS(TM) dural graft is the latest generation in Integra's line of duraplasty materials based on Integra's market leading absorbable collagen matrix technology. Integra launched DuraGen(R) Dural Graft Matrix, the first onlay collagen graft for dural repair, in 1999. This was followed by the launch of DuraGen Plus(R) Dural Regeneration Matrix in 2003. Subsequently, Suturable DuraGen(TM) Dural Regeneration Matrix was brought to market in 2005. Following the 1999 introduction of DuraGen(R), the Integra family of duraplasty materials rapidly became the standard of care for sutureless closure of dural defects in the U.S.A.
"The introduction of DuraGen XS(TM) Dural Regeneration Matrix demonstrates Integra's sustained commitment to providing the neurosurgical community with innovative technology and materials for the management of dural defects. DuraGen XS(TM) has a higher collagen content while maintaining the same porous structure found in our DuraGen Plus(R) materials. The resulting graft is stronger and more robust," said Mark Spilker, Ph.D., Integra's Vice President of Research and Development.
Based on available procedural data, Integra estimates that DuraGen XS(TM) and other DuraGen(R) dural grafts have the potential to be used in over 225,000 neurosurgical procedures annually in the U.S.
The dura mater is a tough, fibrous membrane that surrounds and protects the tissues of the brain and spinal cord. Head and spinal injuries often result in laceration of the dura mater and neurosurgical procedures require the opening or removal of the dura mater to gain access to the delicate tissues contained within. In both cases, effective dural closure is imperative to prevent cerebrospinal fluid leaks and facilitate wound healing. Dural defects may be repaired with dural graft substitutes. The onlay graft technique, possible with Integra DuraGen(R) dural grafts, allows neurosurgeons to conclude operations more efficiently than when using materials that require sutures.

Mommy is Broken

I am not on this journey alone. I have an incredible support team, great friends, wonderful extended family. The ones on this journey, spending long amounts of time each day, are my children. Three little ones, two not yet in school. They know I am different. I haven't been able to pick them up, carry them, rough house with them, or drive them places...so much is different.

"No, mom, use your old voice."

                                 "Mom, can you chase me?"

                                                                          "Pick me up, please."

When they walk with me my children have to go slow, I use my cane and for safety slow is best. A fall could severely damage me. They sometimes grow impatient or ask if I can run with them, I can't. I have been able to find afternoon help so that their lives are not limited by me, but I know that as I watch them play, how much I miss being able to play with them. It breaks my heart to know that if they fall asleep on the couch there is no sweet walk to their room in my arms.

Some days are better than others and I find myself able to connect and share with them. I often wonder how many other parents struggle with young children and post surgery trauma. Here are my guidelines.

1. Focus on what is the same. I can still hold and rock my boys, the only difference is that they need to climb into my lap. I have found that with some accommodations, many of the things that we enjoy are possible. I cannot play video games with my kids, the stimulus and activity is too intense. What I can do is sit by them and cheer them on, watching when I can and taking frequent shut-down moments.  I can watch my children play and climb. I can coach them through relaxation activities when upset, even if I can no longer help them solve the problem. Some days, I have found I am Almost Normal.

2. Find good things about what is different. With my children we find that not all the changes are bad. I am more patient. More willing to listen. able to take things at a slow pace, anything else is impossible. So, we enjoy slow walks; we look for spider webs, look at the mountains, feel the sun on our cheeks. I am finding that I like taking small steps and finding the small moments with my children. I find peace in taking time to rock them, to connect fully one-on-one with no other mental energy being spent elsewhere.

3. Find special moments or traditions to build with each child. I have found that by allowing my children to shape and share in choosing activities, mom isn't so good at thinking about things like this, they are more invested in the activity itself. These moments become more personal and they talk about them more than if I had planned a perfect event. Each week we try to spend time one-on-one with each child. This can take some creative planning, but a few minutes each week is completely possible.

4. Do not allow guilt to creep in when you do as much as you can.  This is what every good parent does. We give as much as we can when we have it. You can not pour water from an empty vessel. Accept that you will miss some things. There will be things you cannot do. Accept that this is the reality now. As long as you connect and built relationships of trust and love with your children, they will not lack for the emotional and physical development they need.

I am incredibly blessed in my journey to have loving support help me with the most important things in my life. I am blessed to have neighbors ready to help in case of emergency. I am blessed with rides to the grocery store when I need them. I am blessed. God is good. Work around instead of against your limitations and you will discover moments of pure joy.

God bless and keep you in His care.

The Logic of Not

My posts have been full of fear, anxiety, and the unknown in recent days. I am trying to understand a concept that I feel is best put into words because this is not something that I alone struggle with. In my most recent speech therapy sessions, in relearning how to think and apply logic, we have found that I have a difficult time grasping the concept of "Not".

Not is the simple idea that something is not true or is Not a rule. For example, the horse is not in the pasture. For me, recovering from brain injury, this creates immediate panic. If the horse is not in the pasture, where is it? Another person may make the logical step that it is simply not there at this time, but it will return. For me the idea of where it is not is so vast and consuming that I become lost in the universe. I am floating somewhere around the rings of Saturn wondering if the horse is grazing in orbit. I am unable to rule out obvious untruths because this filter no longer exists for me. This is something we learn. I become a child asking, not why but what? If Not, then what?

Not creates infinite questions as I try to grasp what is true. However, with the idea of Not, you cannot answer the question in this way. Not, loses its value when you determine what is. For example, take the same horse and go a step further. If I say the horse is in the barn, I am no longer working within the world of Not, I understand what is.

This is applied through the use of game cards. Using color and number (right and left brain) I am able to determine which card applies to the rule, and which card does not. I can determine if a card is red in color, with a value greater than 4 that it is true. I can also determine if it is false. When that idea is turned on its side, when I have to decide if a color is Not greater than 4 and red in color, my mind panics. Post-trauma, I do not understand. The idea of infinite possibility is terrifying to me. I want things to be concrete, certain, all i's dotted and t's crossed.

When I heard that I did Not have a craniotomy, I needed to understand then, what is. This need to understand is a very real visceral need to grasp a concept beyond myself and what has become known and familiar. I am trying to apply a higher level of logic to a frightening experience. Hearing about a slightly different procedure, I need all my questions answered again. Why? Because in order to control and manage my anxiety, I am trying to answer multiple questions in regards to the new information presented. I cannot make the leaps in logic myself. There is not much information on craniectomy. All I know is what I can find online, and it is not much.

What I can find assures me that it was the right choice and that, considering the pressure on my brain, it made the most sense to leave the flexibility in case of additional trauma. I am left with the whole universe of questions as to what this means now.

So, now what?

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.

Fear

I've been quiet. Collecting, repairing, restoring.

I had my follow-up MRI a few days ago. Scans show that new cyst formation, or likely meningioma, has formed. This time near my internal ear. I meet with my neurologist later today. Sounds like this may explain the deafness I am still experiencing.

I have gone through the fear, anger, and bargaining. With prayers of loved ones I got to "Let's do this." As I explained to my sister it's time to put on the big girl panties and make a plan. I am not done. I will not fear more challenges, because I can and will work through them. I am here for a reason. I have a higher purpose and I will stick around to make sure that it happens.

Fear is good, it keeps us safe. Teaches us what things are good for us and what things are not. But, it can also work to cripple us. To reduce our influence. To minimize the things we are able to accomplish. See your fear. Understand it for what it is. Then take from it what you can learn.

What I have learned is that I am not done. I refuse to go quietly into that dark night. I am going to live my life fully, no restrictions, no compromise. I am not able to do everything, but I can do enough. I am and while I am, then look out, I'm not finished yet.

 

Anti-Tumor use of Cannabis Oil

Still looking and collecting data regarding the use of medical marijuana. Trying to find reputable information is incredibly difficult. I did find that historically it wasn't until the 1970's when cannabis was added as a schedule 1 drug that it was considered illegal. Until that time, while not common, it was easier to find access to medical marijuana. This makes me angry. No studies were widely done and as such there is no benefit to drug companies now to perform the research as it cuts off the supply of patients for other forms of treatment. I have never been so angry about a serious lack of care for patients in the medical community. I am furious that there is not more being done.

Suffering from a noncancerous tumor that was trying to take my life I wonder why there is not more being done. I am a Christian. I have never smoked, done drugs of any kind, or even drunk alcohol. I'm a lower middle class mother living in the suburbs of a larger city. And a tumor almost killed me. The way that the drug companies and modern medical field work, I will not have access to a simple plant oil that could, without the risks of invasive brain surgery, save my life.

Essentially, I feel very much as if I have been sentenced to a painful death because someone else can benefit financially from my pain. I am angry. A recent scan has shown a second cyst forming. I am scared. I don't know what will happen. In six months it has started and grown to be 1 cm in diameter already. I have changed my stress levels, adjusted my eating, I exercise daily. This is a game of Russian roulette and drug companies and working to ensure that my gun has five bullets instead of one.


National Cancer Institute statements on Cannabis and Tumor Reduction

Speech Pathology

I have had the opportunity to have some pretty neat discussions about speech pathology. What is it? Why do I need it? What do I get from it?

Here is my humble, basic response.

Speech pathology works with everything from the neck up. All my damaged nerves, speech problems, vision and hearing challenges. Most importantly Speech pathology works to help my cognitive function, my thinking. My neurologist does a great job working to keep my brain physically functioning, removing the tumor, tracking growth and recovery. My speech pathologist focuses on how my brain is now working. Helping me to retrain the damaged portion, take breaks before overload, and self monitor my need to rest periods. Speech pathology keeps me functioning.

There are many things that speech has helped me to understand and interpret as I go on this journey. It has worked on my number recognition, time comprehension, sleeplessness, fatigue, compensations, and even my ability to speak. I have written about individual challenges over the past months.

I found today that I have been exceedingly blessed with my provider. He is working to pioneer aids to reteach the brain. He began working first with stroke patients but has adapted many techniques for me. I would love to see a program made accessible for patients. I know many who have had brain surgery and are told that the trauma they have experienced will heal on its own. Maybe, my rapid progress is because he is teaching me to monitor and evaluate my abilities and adjust my activities based on need.

TBI, PTSD, craniotomy, and even "watch and wait" survivors all have impact trauma on different parts of the brain. If given the tools to heal, we can regain much of our lost function. How blessed I am to have a provider who listens to me and hears the things I can't always say. I'm going through brain development of a child, with the cognition of an adult. I am so grateful for this opportunity to learn.

God bless.

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.

Full Custody

In my journey to become whole, I found the following:

The Write Stuff by author Christy Truitt

He demanded full custody.

The battle over "things" pulled on flesh. A living, breathing, creation in the center of the split. It was the only thing he wanted. The one thing he would not release. 

He knew her life consisted of the line item of the settlement statement. All she knew. Everything she was. 

And he wanted it.

She rolled up her sleeves, took off her earrings, and came out swinging.

You'd think this was a divorce case. A child straddling the growing divide between her parents. About to fall in the middle, his legs unable to stretch anymore.

But no, dear ones. I don't write about a child.

I write about you.

Your identity. Your soul. The very you that is you.

You are the only one who can fight for you. You have sole custody of your choices, actions, words, intentions. Others will come to claim their rights. Woo you with all the other dreams your heart demands only to leave this in the small print, the soft charge. You sign away before you even know to fight.

But fight you must.

No one can separate you from you except...you.

You're worth fighting for.

Now hold my earrings...

 

You are worth it. God is cheering you on. Get to it!

 

 

 

 

 

 

 

 

 

 

 

 

Goal Setting

Goal #1 Increase opportunities for meditation and self reflection. As I do so I am happier and more able to cope with the realities of everyday.

I have been working on very specific goals that impact my ADL's, activities of daily life. It is vital to my well being to be making progress and show improvement. At times I become very discouraged but looking back, as I can see the progress I have made, it makes the work I do every day worth it. One goal area I am addressing is to be more mindful and present. To help with this I am including some of my favorite meditations. Mediation has been shown to have improvement with brain function. Added to physical activity and dietary changes, meditation helps me to manage my pain which at times is overwhelming.

I enjoy the work of many practitioners who teach mindfulness or guided meditations. Some are simply music that allow personal journey.

Deva Premal: 10 minutes

 

 

Healing Mindfulness Journey: 70 minutes

Years ago I was blessed to meet Terry Ledford and have benefitted from his work. Below is an example of some of what he does. You can also subscribe to his You tube channel.

God bless and keep you.

Plans

Plans, goals and ambition do not die off when you are given a life changing medical emergency. In effect your time actually becomes more valued, important, and essential that it become well spent. I measure everything from a standpoint of its impact and value on my life goals, its energy cost, and even its emotional value, i.e. the joy it brings me today. All these are weighed together to help me determine where my life values are at. I wrote earlier about scheduling and activity management. Cognitive Aids

Take that one step further to determine your goals. If your life is not reflecting what you say your values are one of two things has occurred; either your stated values are not your real values, or you have lost focus on what a precious resource the measurement of time is. Time is finite. None of us can buy, build, or bargain for more.

What we can do is spend wisely what we have. This does allow for rest periods. Based on my schedule you can see that much of my day is taken up by recovery and rest periods. I can accept this because that rest allows my brain and body to rebuild and heal. If I do not rest I collapse. That is my reality. Not enough rest and I can do nothing. I breathe, blink, and that is it. No speech, no memory retention, I lose even the ability to perform basic tasks.

As you plan for this next period in your life, make your goals SMART.

Tools for SMART goals