Some Day

Brain tumors become a game of "some day". For many Some day will be surgery. Some day they will have a seizure. Some day they will lose memory or life function.

Numbness. Pain. Disorientation. Fatigue. Double vision. Hearing loss. All these can occur any time in any way for brain tumor patients, benign or cancerous. Surgery is often reserved for those cases where, to not go forward, guarantees death. Radiation and chemotherapy may offer hope and relief for some, but not all cases will benefit.

You could say I was one of the fortunate ones. Instead of years of some day, everything happened so fast that some day was today.

Now my some day consists of creating a life post craniectomy. Some day I will not shake. Some day I will be asked a question and know the answer without thinking about it. Some day I will drive again. Some day I will laugh and run with my children. Some day I will not be in pain.

As you can see, it becomes easy to get lost in some day. I try to focus on today, on now.

It's not always easy.

There are times where holding on to today, this moment, is all I can do. But I hope. I hope for healing, for growth. I hope that none of my loved ones will have to walk this journey.

I respect those that support their family, that hold loved ones when they wake up lost and confused.

Most of all, I respect these warriors. They wake up every morning, never knowing what will happen, knowing that anything is possible, and they choose to live. Every moment they choose life. Past the pain, seizures, anxiety and unknowns they choose to live a life you will know nothing about. (Thank God you don't, this journey is not for the faint of heart.)

They live around you, these warriors. Mothers, grandmothers, fathers and friends. They live quietly. Not making waves. Getting up and living their life, the best way they can. They work and play, laugh and love. Through all this they know how fleeting it all can be. But they still do it, every day, because it is not yet some day and they are here today.

God bless and keep you.

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.

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?

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.

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.

Trapped in Myself

So. I did it. I watched Still Alice. Incredible.

I mean that. The movie had a scope and grasp of brain trauma that was real. A friend who has also undergone a craniotomy recommended it and so I got up the guts to put it in my Netflix rotation. It took a few days after it arrived for me to feel brave enough to watch. I sat there, awed. I have finally found something to help me show/explain to others what post craniotomy life is like. I know the story is about early onset Alzheimer's. However, what Alice experiences is so similar to what many experience after tumors and brain surgery.

Blurred vision, disorientation, vulnerability. Lost memories. Decreased cognition. Poor comprehension and memory lapses. This is my life right now. The biggest difference, I get to heal. I get better. Not daily, but monthly there is improvement. I am amazed at the courage of some, to go forward knowing that this may be as good as it gets. Today may be the best it ever is.

In the movie I was most fascinated by the family response. Withdrawal, denial, shame, and fear were there in all their glory.

Meningioma tumors have three causes. One of those causes is heredity. Brain tumor is part of my family history. This is now something my children will have to think about and may potentially face. That is my biggest fear. Not for me, but for them. I don't fear for my life or what I am going through. I fear for my boys. That they will fear or hide from this because it is scary. It can be frightening. You face life changes on a grand scale. And no one knows what will happen.

At this point you have to put your all in God. He is the only one who knows what is to come. He cares for you and me. He cares for my boys as much as I do. He desires their growth and happiness. I can trust in that. Come what may, that is where my faith is.

Gross Stuff No One Tells You

After a craniotomy or craniectomy there is a lot to take in. A lot of changes. A lot to think about, and then there is the stuff that no one talks about.

1. You will not be able to shower. Yup, no water immersion of any kind until cleared by your doctor. Sponge baths? Yeah, get used to it. Someone will help you wash, no modesty here. The nurse will be super professional and not look more than necessary. You'll be on a lot of pain killers, so this is only a mild inconvenience.

2. Food has no flavor. Literally everything tastes like cardboard soaked in Elmer's glue. You will likely be on a liquid only diet and have a ton of medications so you won't really care. There is a point when you move to solids that it still tastes like cardboard. This will diminish over time. Stay calm and enjoy relearning what you like now.

3. You will possibly have iodine film in your hair; it looks like chunks of dried blood when you brush or comb your hair. It's red and sticky and looks really gross around your incision. This film serves a great purpose in surgery keeping pesky hairs out of your open skull, but you may still be removing from your head up to a week after surgery.

4. Your incision will itch, a lot. We are talking burning fires in the seventh circle of hell. You will wake up at random times certain that some evil imp is using your head as a drawing board with a quill pen. And heaven protect anyone who dares to touch any part of your head without express and written consent. It is strictly off limits.

5. Random body functions will become impossibly hard. I remember it taking me four weeks to learn to swallow again. This included food, drink, and pills. It becomes difficult when you hold your pain killer in your hand and prepare to attempt to get it down for the third time. Any of your functions may be affected due to swelling in the brain following the trauma of surgery. Ask your health care workers. They have experience in this area and can help you through the minefield of new experiences.

6. Bowels, #2, the backend. Whatever you call it you will not be able to poop for the foreseeable future. When you can finally manage it with the aid of stool softners it will be an epic event that you are likely to share with anyone in your closest vicinity.

7. Riding in a car is an ordeal. Let's be very clear, you will not be able to drive for an extended period of time. What you may not consider is that even riding will overload your system with stimuli. It can be intense. Simple changes such as polarized sunglasses and closing your eyes will reduce the overload and help you regulate.

Overall, your brain has been reset. You can and will experience myriad changes. No two experiences are the same. Your experience will be as individual as you are. Let it be. Talk to your healthcare team and don't be afraid to ask questions. You will only know what you need if you ask. Anything is possible; you have undergone a life changing experience, accept now that you will never be the same, that is ok. The possibilities are endless. God bless you.