A Lesson On The Brain

Thursday June 20, 2013

Here is a brief lesson on the areas of the brain that Mom's cancer has affected.

We were told that she had a "Left Parietal/Occipital Craniotomy".

So, the tumor was located left of the midline of the brain, between and amongst the Parietal and Occipital Lobes.

The facts below help us to understand the symptoms (or deficits as they're being called) that Mom is having.

The Parietal Lobe is located here:

 













It controls the following functions:

 

• The sensory area - sensation from muscles and skin.

• It controls visual and touch perception, voluntary movements that are goal directed and that manipulate objects, and integration of senses needed for understanding single concepts, such as apple pie triggering smell, taste, vision and touch sensory cues comprising the single concept "apple pie."

• You may find you are unable to attend to two or more things at one time, such as listening to something and looking for something simultaneously.

• You may experience anomia or the inability to name something, for example, not knowing what to call breakfast or a sandwich.

• You may experience agraphia, which is the inability to call up words when writing something, like being unable to write the word for water.

• Similarly, you may realize you suffer from alexia when you discover you cannot read or cannot read correctly.

• You may also lose your ability to draw--and stick figures would count--or to tell left from right.

• Dyscalculia may be apparent in a loss of the ability to perform mathematical calculations such as are needed for balancing bank account statements.

• You may similarly have difficulties with eye-hand coordination such as is needed to sew on a button.

• Lastly, apraxia may cause difficulty with focusing visual attention and being fully aware of body parts and/or spatial surroundings.

Credit: Yahoo.com

  The Occipital Lobe is located here:

 

 

It controls the following functions:

 

• The occipital lobe processes visual information. The information that is sent through the eyes, and is then interpreted by this lobe.

 

• This lobe of the brain is also responsible for recognizing shape. It is the smallest of the four lobes.

 

• This lobe, like the others, is separated into a right and left portion. The two lobes serve the opposite side of the body. For instance, the right portion serves the left side of the body, and vice versa.

 

Credit: Yahoo.com

 

Another simple visual is below.  Areas 9 and 1 on the left side is where her tumor was.

 

There you have it.  A brief lesson on the brain.  Pretty crazy huh?  I find it fascinating.  The more I learn, the more I realize the true precision with which we were created.

Fear Has Crept In

Wednesday June 19, 2013

I went to visit Mom today at Saint Mary's Rehabilitation Hospital. 

I have to say that the second I walked in I could tell things were... different.

Before I get into today, let's see if I can manage some chronological order here:

Friday June 14 was her first day there.

The folks at my work were kind enough to let me work from Dad's house that day so I could do some laundry for them and bring up a fresh suitcase of clean comfies for Mom, as well as do anything around the house that needed to be done in preparation for her return. 

Mom was being transported from Novi via ambulance, which is standard procedure for this sort of thing, and I decided I wanted to meet her & Dad at the hospital when they got there.  I knew she was scared.  I wanted her to see familiar faces when she arrived.

I spoke with her sisters throughout the day and asked them to meet us there as well.  I felt that Mom would need all the love and support we could muster when she arrived. 

So when she got there, we could tell immediately that she was exhausted, and very hungry.  She kept referring to her ride there as one being in a "really big truck".  Like, semi truck.  We told her it was an ambulance, but she insisted it was a "really big truck".  She slept most of the way there, and was probably pretty groggy.

None of us had seen her since she was admitted back into Novi the week before (Read that post), so we were all anxious to speak with her and find out how she was feeling and doing.

She was not allowed to get out of bed without a nurse.  Under no circumstances was she allowed to do anything without a nurse present.  She is a "fall risk".

We spent most of the late afternoon and evening there with her. 

We met her doctor.

We asked a lot of questions.

We got answers to most of our questions.

Basically, she is in rehab for many reasons.

To learn to cope with her health condition, and the realities of her new way of life (mental rehab).

To learn to cope with her deficits from the tumor - surgery, brain trauma, and brain cancer - (physical/speech rehab).

To learn to be independent again, but differently than before.

To learn and understand how to live with this type of cancer, and the treatments that were to follow.

Rehab isn't just for her either.  It is for us, her family, as well.  We need to learn how to speak with her in a way that she can answer.  We need to learn what her deficits are as well.  We need to learn how to let her be independent; what she can do, and what she needs assistance to do.

We learned many things that first day.

We learned that her simple math and number knowledge had diminished.  For example, her doctor drew a circle on a piece of paper.  He then asked Mom, using the numbers 1-12 to draw what she thinks a clock would look like.  She did her best, changed some things around a little, and like a school girl, proudly handed the "clock" back to her doctor.

The number 12 was where the number 9 or 10 would go.  1 was at the top where 12 would go, followed by 2, 3, and 4.  After number 4 came number 7, and so on.

But man, was she proud of herself!

We learned that tasks, and the different steps we take to complete those tasks, were going to be difficult for her.  She needed to remember how to do things, in which order, in order to complete tasks.  Taking a shower, for example, and which steps come in which order.  Making a sandwich, getting dressed, daily routines.  These were all processes that she could see complete in her mind, but could not determine the order in which to take the steps to complete them.

We learned that certain parts of her memory were being challenged.  They aren't gone, they just need some prodding to come to the forefront.  She gets stuck on words.  For example, she would say that she wants to eat an... an... ummm... uhhh... and then she gets very frustrated because she can't think of the word that matches the picture in her head of what it is she wants to eat.  (More about this later in the post).

We learned about her cancer.  We learned more about the tumor, where it was located (Left Parietal Occipital), and which functions that part of the brain controls.

We learned which medications she's currently on, and which ones they will add or take away in the coming weeks.

It was a very emotional day. 

Mom was exhausted and extremely emotional. 

Dad was exhausted yet still being the rock that he is for her.

Her sisters and I were emotional (privately) yet optimistic and carried the mood in the room - so Dad didn't have to - and made sure that Mom knew that she was safe and in good hands.

The next time I saw her was Sunday afternoon (Day 2).  She had had a full day (3 hour chunks of rehab, twice per day) on Saturday and was pretty tired.  I knew her first day would be exhausting, so I stayed away to allow her to rest when she needed to.

She seemed really good.  She had come to terms with where she was and why she was there.  She seemed in good spirits. Dad seemed rested and much better. We talked for a bit.

I asked her what she did in rehab today.  She couldn't remember.

Then, I changed the question.  I asked her if she read anything in rehab today.  She said yes.

I asked her if she wrote anything in rehab today.  She said yes.

Specifics.  No open-ended questions.  I picked up on that really quickly.  She hadn't had her physical therapy yet that day, just speech, so I knew she hadn't done any walking yet.

When I left, I felt good.  She was tired, but I knew they would tailor her therapy to her needs for rest.  I also knew that they would push her to her limits, just so that she could see how far she is coming, each and every day.

My next visit was today.  Oh boy what a difference three days makes.

Like I stated earlier, I knew the second I walked in that things were different today.  She was eating her dinner, and I did not receive the warm welcome that I received for my previous visits.  She barely smiled.  Her answers were short and to the point.  The conversation felt forced, completely unlike any previous visit I had had with her, anywhere, ever.

Dad and I talked shop for a bit (we both work in the same industry) while she finished her dinner.  Then Dad asked her if she'd like to go for a walk in the garden.  A walk for her consists of a wheelchair ride down to the garden.  She cannot walk without assistance yet, and we did not have access to a safety belt, so she sat in her wheelchair, in the sun, and we talked.

She started to open up about the last few days.  I read her activity log book that they keep.  It shows daily activities (rehab) and the accomplishments she's made.

Dad had been there with her for her rehab session for half the day.  So, he had many stories of goals she had met that day alone! 

For example, there is this board in the rehab room.  It's about 4 ft by 4 ft, and it's a touch screen with a backlight.  Mom is in front of the board, and lights will appear randomly, in different areas on the board.  When she touches the light, it registers her speed and accuracy with which she touched the light.  Her first try, she touched 30 lights in 75 seconds.  By the second try, she had knocked off 25 seconds from her time, with the same accuracy.

The next exercise was touching the lights, but this time they had letters in them.  She was to touch the lights, and say a word that represents that letter.  For example, the first light had the letter "A" in it.  She said "Apple".  Then the letter "D" showed up, she said "Dog".  When the letter "C" showed up, Mom said "C3PO".  Everyone stopped.  Dad busted out laughing.  The therapist had a confused look on her face.  Mom says, "C3PO.  Haven't you ever seen Star Wars?  Duh!"  And then continued on with the rest of the exercise.

When Dad told me this story, he was still chuckling!  What a hoot!

She told the time today!  This is huge!

Dad also learned (remember the "stuck on a word-can't remember which word she wants to say, from above?) that she gets frustrated when she can't think of the word she wants to say.  Instead of sitting and waiting for her to think of the word, we need to help her think of it, and walk her through the thought process of recognizing words.

Using the example above, "she would say that she wants to eat an... an... ummm... uhhh... and then she gets very frustrated because she can't think of the word that matches the picture in her head of what it is she wants to eat." we will respond with questions.  What color is it?  What type of food is it?  What shape is it?  And she would respond with Red, a fruit, round, juicy... APPLE!  Instead of being stuck in her frustration, she was able to think of the word she wanted, and move on.

Anyway, we spent some time celebrating her victories from the past few days, and all of the things she has learned.  And then she started to loosen up a bit and began talking about how she had been feeling.

She is pretty depressed.  She feels safe in the hospital "bubble". 

She is scared to go home and leave her "bubble".

She is petrified about Chemotherapy and Radiation treatments.  So much so that she won't even broach the subject.  She knows that she will address this with her therapist, but nonetheless, she doesn't even want to speak of it.

She is frustrated with what her vision is of what she has become.  She feels she's been "reduced" to something much less that what she was before she got sick.  There's no amount of encouragement that will change this view I'm afraid.  She sees us celebrating her victories, no matter how small or big.  She doesn't see them as victories.  She sees them as more battles.  More shortfalls.  More deficits.

She is speaking with a therapist on a regular basis, and she is being treated for this depression.  I myself am familiar with depression, and I understand it, so I was not surprised to see this.  I actually expected this to happen.

The three of us talked in length, but Dad and I mostly listened, without giving much input, to how she feels right now.  We were her sounding boards.  I think the things she is feeling are normal for this type of situation.  Dad and I also expressed to her that we, as her family and caregivers, are struggling as well.  We get upset seeing her sick.  We get frustrated like she does.  We have a hard time grasping all that has happened.  When the lights go out and no one is around, all we're left with are our thoughts.  As her family, it's extremely difficult to deal with.  But as my dad put it so eloquently (HA!), we just fall asleep, and wake up the next day to do it all over again. 

That's all we can do.

Over time, things will continue to change.  They will get a little better, then get worse, then better again.  It's the roller-coaster ride that we can't predict the next turn.

We will remain strong, and vigilant as we uncover what each twist and turn of this journey has to bring us.

As Mom rides this ride, sometimes so very lonely, we will remind her that she is NOT alone, and we are right here with her through every turn.

Here's the link to her fundraiser page Mom's Fundraiser.  As you can imagine, the expense is already enormous given her

initial diagnosis (Never Give Up The Fight - post),

her heart attack (A Bump In The Road - post),

her surgery (Nothing Short of a Miracle - post),

her second admission post-surgery (Closer To Home - post) 

and now a lengthy stay in a rehab hospital.  If you can give, please do.  If you cannot, please help me think of creative ways to raise money to help out - there are a couple of events already in the works.  If you know of Foundations or Organizations that help those going through cancer, please send them on.

Thank you for your continued support.  The prayers and well wishes do the most work, and are needed to continue.

May The Father place his healing hand on her now, and for the duration of this journey.  Whether she needs it on her brain, her heart or her mind... may He heal her and make her whole again.

Closer To Home

Friday June 14, 2013

Well this week has been exciting...

Not really.  It's been rather difficult.

Dad took Mom to her post-op checkup in Novi on Tuesday.  She had been regressing some in the days prior to the appointment, and he was looking forward to getting some answers about what was going on.

A CT scan at the appointment showed swelling on her brain.  So much swelling that it had pushed her brain off-center a little.  The left side had a hole where the tumor had been.  Her brain swelled to fill that hole, and started putting pressure on the right side of her brain.

Post-surgery, she was taken off steroids cold turkey.  Some patients can handle that, some need to be weaned.  Apparently, Mom is one of the latter.

They promptly admitted her to the Neuro ICU.  They immediately placed her back on steriods to try to gain control of the swelling.

Obviously, we weren't prepared for all of this!  Dad hadn't packed any clothes or necessities for them to stay.  He headed back home that evening to pack some things...

Over the course of the next few days, she began to get better - slowly.  She saw Physical Therapists regularly.  At this point, she cannot walk without a walker, her speech is ok, but just not what it used to be.  Her eyesight has deteriorated - she cannot dial numbers on the phone, or text or type. 

It was a waiting game to see if the swelling would begin to subside.  And it did.

We had heard little from Dad while he was there with her.  It was a whirlwind for him.  Yesterday, I finally poked & prodded to get him to give me an update on her condition.  Through tired eyes and exhausted fingers, he texted what he could, following up with a phone call.

Basically, this is what I learned:

She is now walking with the assistance of a walker. She needs continual rehab. Today, she is being transported to Mary Free Bed (the best) via ambulance for inpatient rehabilitation for an undetermined amount of time. We are told that chemo and radiation treatments won't start until swelling is down significantly, and rehab has improved her physical limitations.

Her symptoms should improve with time and rehabilitation.

Emotionally, she's on a roller coaster ride.

She is frustrated.

She is petrified.

I could hear the pure exhaustion in his voice.  He sounded near defeat.  Every now & again, I heard hope.  He's still got it.  He'll never lose it.  One thing about my dad is he is a fighter.  He never gives up.  Never.  And this is the most important, toughest fight he's ever had to endure.  That's his best friend, his life companion, lying in a hospital bed.  And he is helpless to take her pain away.

Behind her, he stands.  Waiting to catch her, to carry her.  And down the line, stands us - his family.  Waiting to catch him.  And even further stands our friends and loved ones, waiting to catch us.  And so on...  We will endure, we will stand firm with hope for one more day, tomorrow being better than today.

She will be in good hands the whole way.  With the move to Mary Free Bed, she will be in the best place to get her well for this leg of the journey.

And she will be one step closer to home.

Life As We Knew It...

Tuesday June 11, 2013

It's been just over 10 days since Mom had surgery to remove the nasty Grade 4 Glioblastoma (GBM) tumor that has invaded her brain.

I've tried to give her & Dad some space to get acclimated at home, and used to their new routine.

Here & there I get an update from Dad.  Last week Thursday's update went like this (In Dad's words):

"Not doing too badly so far.  It was hard leaving the house this morning.  It seems like I have been gone from work for a month.  I was about to leave the house when Mom was getting upset about the cat trying to move around on the bed and bumping into her head from time to time.  She had a really bad headache this morning, so I gave her some Tylenol and helped her back into bed in hopes that she would get more rest.

We have spent the last few days trying to figure out a routine for meds, sleep, etc.  I think we have it pretty close now.  I gave [her best friend / caretaker] the rundown of the routine as we have it now, how the last few days have gone, what needs to be done, etc.  Like I said, it felt wierd leaving the house.

At lunchtime I checked on things with Mom and her headache was gone and she had gotten some good rest.  They were going to attempt to do a little walk this afternoon.

I have been keeping very good notes and records so that I don't have to rely on my memory when we go back to the doctor next Tuesday (the 11th)."

I got another update from Dad yesterday, followed up by a text message this afternoon.  She is currently in the ER again; going to have to stay a couple of days.  Here's that one (again, in Dad's words):

"Well, the weekend overall wasn't too bad.  Your brother came over Friday evening and cut the grass for me and visited a while.  It was a good visit and I am very grateful to him for doing that (one less thing I would have to try to squeeze in). 

Neither of us got much sleep Saturday night - it was just one thing after another.

Saturday during the day, she and [best friend] managed to get her in the shower so that she could wash her hair and get cleaned up.  We have a seat that fits in the tub that she can sit on while bathing to make it easier.

Sunday we got up and had our coffee together as "normal".  She is up only for a couple of hours before she gets tired and needs a nap again.  We did manage to get out of the house for a bit in the afternoon for a short walk.  That exhausted her and not long after getting back she had to nap again.  She slept until almost 8:00 pm and back to bed by 11:00 pm.

She says that everything she puts in her mouth lately tastes bitter, so finding food that settles well is becoming a bit of a challenge.  She seems to be a bit weaker and says that her legs feel like they don't want to support her very well so I, (or someone) has to help her get around the house as she is pretty unsteady on her feet.

Some of the short term memory that appeared to come back after surgery seems to be losing ground again as she was being repetitive with me quite a bit.  I ended up having to cut her french toast for her as she had a tough time getting it done herself.

I'm not reading too much into this as it may be normal for things to appear to make big improvements in the "right after" surgery and then seem to settle back to "pre-surgery" issues for a time.  We have no baseline to measure any of this as far as what to expect, what is normal or otherwise.  We have to be back to see her surgeon tomorrow, so I will address these things with her doctor.

Tomorrow will be a long day and I'm sure it'll wipe her out (and probably myself as well), but some answers would be good to have...  One day at a time."

I got a text message just a bit ago from Dad.  This is all I know, so I apologize for the clifhanger, but AS SOON AS I know more, I'll update.

"We are at the hospital right now in ER.  They did a CT scan and found swelling.  Back on steroids and will be admitted for a day or two to make sure things start coming back."

I didn't prod for more information - I'm sure he's utterly exhausted.  He'll get back to me when he gets a down minute, or when mom rests.

Life as we knew it is over.  This is now our life, dad's life, Mom's life... until it changes again.  Each new day is a brand new puzzle needing to be put together piece by piece, only to start again the next day.

Please continue to pray!  Pray for Mom, the doctors caring for her, pray for my dad, for rest, knowledge and peace.

If you didn't catch this link in my last post, this is the link for the fundraiser.  As well as another place I post (shorter) updates, pictures of Mom, etc.  Mom's Fundraiser

Check here for updates, to donate, to leave a message of hope for Dianne or Dad, anything.  It's a great website!  And please - share, share, share!  Let's get the word out about this nasty disease and come together as family and community to help Mom through this fight!

Nothing Short of a Miracle

Monday June 3, 2013

Well, she made it.

She made it through the diagnosis of her brain tumor.

She made it through a heart attack.

She made it through brain surgery to remove a poisonous tumor.

We learned on Friday that the tumor was removed.  We were told that it was completely removed.  The physician that told us this little tidbit was not the actual surgeon that performed the surgery.  It was one of his colleagues.

Shortly after we received this news, the surgeon came in and elaborated.

Maybe we were all just high on the news that the tumor was gone.  Maybe we were just so incredibly hopeful that this was over.

I know we weren't naive.  I know we knew better.

But the news he delivered was crushing... and I think we all knew it was coming sooner or later.

Some preliminary tests had come back.  Yes, the tumor was removed ("grossly", meaning most of it) - but the cancer was not.  Her brain is still littered with cancer cells.

He said it.  That word. 

Cancer.  It was true.

Grade 4 Glioblastoma.

You can find out more about what a Glioblastoma is on the American Brain Tumor Association's website.  I set that link to take you right to the glioblasotma page.

It's gnarly.  Nasty.  And it looks really bad in black & white.

But we have to remember that every person is different.  Every person fights differently.  There are statistics, and there are miracles.  In my opinion, Mom's story is already nothing short of a miracle.

Immediately following her surgery, it was so hard to look at her.  She ate like a little bird.  She could barely speak.  She could barely open her eyes. 

We were all waiting in such anticipation to see how she was.  Did she know who we were?  Did she remember what she was doing here? 

By the late afternoon / evening the day of surgery, she was so exhausted and on regular doses of pain meds that all she did was sleep.
And we were still waiting to see.

The next day, she progressed more.  Physical Therapists came to assist her with simple things.  They asked her questions about how she felt, what was missing, what was difficult.

By the second day after surgery, she was carrying on full conversations.  Reminiscing back 25-30 years.

But when the Therapist asked her what the date was, she couldn't answer.  When asked what month it was, she couldn't answer.  When asked what year it was, she immediately said 2013.  Yay! 

She could name every person that was in the room with no problem.  She could feed herself with ease.  However, reaching for things and picking them up was quite a task.

Mom described it as though you were standing in front of a mirror.  There's a tube of chapstick on the counter and you reach for it, but you have to use the mirror to guide you.  Naturally, you may tend to go to one side or another of the item.  Or, you may think it's farther away than it really is.  But you can ONLY use the mirror to find it.  You cannot take your eyes away and see the item in its real position.

And she had no peripheral vision on her right side.  You had to pretty much be directly in front of her for her to see you.

So, her vision is a little off.

She could not stand on both feet with her eyes closed.  She would fall over.

She could not walk - anywhere - without assitance and holding onto the wall for guidance.

She could touch her nose, and then reach out and touch a hand in front of her with her eyes closed.

She could not do "flap jacks" with her hand.  Take one hand and hold it out palm up.  Take the other hand and flip flop it on top of the other - back & forth.  She could not do that.

She could not complete certain sentences using proper English.  She forgot which words went together to complete a sentence.

She had a hard time reading (her dinner menu, for example) and having a picture in her mind of what she was reading.  Immediate memory was not clear.

At least on this day.

Today, day 3 post-op, those symptoms are already subsiding.  She is talking on the phone, walking through the house mostly without assistance.  She is reading better.  Her sentences are more accurate and "normal".  She has her incredible sense of humor back.  She remembers things, stories, people. 

My dad described it as something "amazing" to watch as she continues to get better hour after hour.

This is nothing short of a miracle.

We are celebrating small victories.  And we will be doing this for a long time.  I told my dad on Friday (surgery day) that that was the easy day.  And that was a hard day.  The rehabilitation, chemotherapy, radiation, side effects - and all of things that will occur that we can't even comprehend right now - they're coming.

There was a time recently that I was feeling incredibly overwhelmed - like I would never reach the shore.  My dad asked me, "How do you eat an elephant"?

"One bite at a time".

Well we're going to liken this battle with cancer to eating an elephant (but just a little - obviously cancer is very real, and eating an elephant is just not). 

Both seem humongous.

But taken one step at a time, one bite at a time, when you look back, you realize how far you've come.  It isn't insurmountable. 

I've recently also learned that the medical bills are piling up.  They have insurance, and their yearly out of pocket deductible has already been met.  Their portion of each bill after insurance is in the thousands of dollars.  And it's only the beginning.

I set up a fundraiser for them to help ease the pain of medical bills on top of everything else.  My dad still works a full time job.  They have a full time friend and caretaker who comes to the house every day to help Dianne get around, cook, you name it.  Dad is keeping all the appointments, paperwork, transcripts, physicians (neurology, oncology, cardiac, etc) - everything - straight.

If there was anything I could do to lighten that load I would.  This is Dad's new life now.  As a family, and as a community, this is when we're called to help one another.  Here's a link to the fundraiser page:  Dianne's Battle - A Fighter's Journey With Brain Cancer.  You can go to that page to get updates, donate, comment or leave a message for Dad & Di.  You can give anonymously or not, you can keep your donation amount private.  Donations are received through PayPal, but you can give using PayPal, or any credit / debit card without using PayPal.  Any gift you can give is immensely appreciated - and no gift is too small.  Even if you can't give, please visit the site and share her story.  Share her updates.  Get the word out about Brain Cancer.  You might touch someone who is going through this very thing!  Maybe someone out there will be able to relate or share their story to help Mom through this.

Words cannot express the gratitude we feel from the outpouring of prayers and concern for mom.  I know sometimes Dad is brought to tears from the amazing support they have received.

Anyway, thanks for reading.  There are so many milestones ahead - and I want to share them with you.  So keep coming back.