"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?

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.

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.

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.