"Cautiously Optimistic"

Friday August 23, 2013

The second half of this post was written by my dad, even though he doesn't know it.

What a month it's been!

Since I last wrote (7/18), Mom got a haircut.  And manicure.  And she was pampered for an afternoon. 

She hadn't had her hair cut since they shaved it for her brain surgery.

So, a friend of mine who is a Cosmetologist came over and spent a few hours with her at home, pampering her and making her feel oh so good!

Then about a week after that, I got married.  The wedding was beautiful, the weather was perfect, and along with Mom, our families were able to share in our big day.

About a week after we got home from the wedding, I was asked to sit with Mom for a Saturday to give her best friend a break, and allow my dad to attend a Saturday class.

I was happy to do it.

Then my dad gave me a heads up that Mom was probably going to ask me to shave her head that day.  He said her hair was falling out in clumps, falling into her food and always getting in her mouth.

When I got there that Saturday morning, I could see right away what he was talking about.

I knew I couldn't shave her head.  It's not that I can't work a set of clippers, it's the emotional part - shaving my mom's head... because she has cancer...  and the chemo is making all of her hair fall out... 

So, I called my friend.  Luckily, she had a little bit of time - and she is GREAT with people, especially in difficult situations.

Mom wasn't nervous about it at all.

So, off it came.

And the first time I took Mom in the house to look in the mirror, we both stared.  Silent.

And then our eyes met.

And we realized we were both crying. 

And we hugged.  And cried some more.

I looked at mom and said, "It's just hair.  You are still beautiful.  You will always be beautiful."

She looked back at me and said, "I know, but it's CANCER.  This is real.  This is really happening.  How did this happen?"

And then, through her sobs and tears, she said something to me that she says A LOT. 

She wrapped her arms around me and said, "I love you so much.  So much you'll never know.  You will always be my little girl.  I know I had to share you with your mom while you were growing up, but it was one of my greatest joys to be a part of raising you.  You will always be my little girl.  Don't forget me.  Don't forget who I used to be.  Don't forget our memories."

We held each other and I assured her that I would never forget.

I will never forget that moment. 

Or the moment just a week prior to that day when I walked over to her after the wedding ceremony and bent over to hug her.  Our eyes met again and she told me how proud she is of me.  She told me how much joy it gives her to know that the girls and I are happy.  And as she is saying this, my eyes are welling up with tears, looking back at a woman that physically, is so different, but in her eyes I see the same woman I have known since I was 4 years old.

I looked over at my dad and he was crying as well.  I can only imagine what he was thinking, watching the two women in his life have a moment like that.  There were so many different dynamics taking place at one time...  needless to say, it was a very special moment, and a very special day.

So, Mom wears her hats and head coverings with pride. 

She no longer has hair falling out everywhere.

And she is down to three radiation treatments.

I was told by my dad after the wedding (he waited to tell me so I wouldn't stress) that Mom's tumor had grown back 2+ inches in the three weeks between her brain surgery and the start of radiation.

Originally, the tumor was about the size of a racquetball. 

So, this sucker is VERY aggressive.

And this is the part of this post that my dad will take over.  I haven't had time to update, so he took the liberty to update his Facebook status a couple of times in the last couple of days.  Here's what he wrote:

Wednesday August 21, 2013

" Well ok... the term is "cautiously optimistic."  We are down to four radiation treatments left to go, (the same for chemo for now).  We saw the doctor after treatment today as we always do on Wednesday and asked, "What do we expect from here?"
 
 

As the radiation completes, we should expect the brain to begin to "settle down", swelling due to the treatments should begin to subside bringing fewer issues.... You will notice a few words such as "should" and "settle", hence the cautious portion of the term. The optimistic portion comes from "fewer". At some point, usually about three months, there will be an MRI to scan her brain to determine the effectiveness of the radiation. As for the chemo, the medical oncologist MAY choose to continue further treatment for a time not yet determined. Most of those decisions may be based on the results of the scan. Now for the " optimistic". We can now be optimistic that all of this has done the intended job of reducing and even eliminating the tumor which has proven to be difficult at best. With reduced swelling, there should come relief in the form of added clear thinking, understanding and reasoning. Along with those comes added freedom and independence to do more of the "simple daily tasks" that we all take for granted on a daily basis and just do them as we always have without any thought…something that has been missing for way too long now. I want to thank my family and friends for all of the well wishes, prayers and help that have been extended to us so far. I say keep them coming, we are not there yet and have a long way to go still. I love you all…For now we wait……cautiously optimistic.

 

Thursday August 22, 2013

"cautiously optimistic" part two……We had another radiation treatment today, (3 more to go). After that we had an appt with our chemo doc. Starting tomorrow we drop one steroid, down to two. Over the next three weeks the plan is to slowly ween her off of the rest of them. About a week after radiation is done she is to start a new routine of a different chemo. This one is through an IV, (up until now they have been pill form). The new routine will be approximately once a week for what is now an undetermined amount of time. He was not happy that the tumor had regrowth to the size of a jumbo egg three weeks after surgery. "This is an aggressive tumor so we need to be aggressive with the treatment"…his words.

"What can we expect from here"? What we hope to see is a reduction in the puffiness of her face from the steroids, improved leg and arm strength, hopefully increased reasoning and thought processing. The swelling of the brain should begin to subside from the radiation. In about a month, we will get an MRI scan to see if radiation and chemo has been effective in shrinking the tumor or even eliminating it at least for the time being. There will be additional scans about every three months or so to monitor progress. Do we have hope? Of course we do. Do we still need prayers? You bet! You would have to have a crystal ball in order to be able to tell what is to be much beyond today. Everything I've read, everyone I've heard is nothing short of grim. There are hundreds of people that get these grade IV GBM's every day. Many, even more of them go on to survive for anywhere from a year or two and some for many years. It's never without struggle, never without a Herculean effort, always with yet another round of treatments in one form or another.

Is there hope? Yes.

Can we do this? Yes.

As long as we continue we will be "Cautiously optimistic"

So there you have it.  We fight on. 

And we need you to fight with us.  If you feel the desire to help out financially, please do.  The monetary donations that we have received have ALL gone to help pay mom's medical bills.  And the bills are still coming in droves.  Dad is struggling to keep up - but doing his absolute best.  We have a long row to hoe yet, this isn't over by a long shot.  Please, share the fundraiser website with those you know.  Share Mom's story.  Click here to donate - it's free, and it's safe.

I have to say, the day Mom got her hair cut, we were blessed beyond our wildest dreams.

As I posted in "In Dad's Words, Get Me Off This Ride!", they didn't have air conditioning.  And their refrigerator had quit working - they lost almost the entire fridge and freezer full of food.

On the day Mom got pampered, they received a new fridge... donated.

On that same day, they also received central A/C - also donated.

The outpouring of generosity is amazing.  The network of prayers - all over the world - is amazing.  Humbling.

Please continue to pray.  Pray for answers.  Pray for healing. Pray for Peace.  Pray for patience and peace for those caring for Mom on a daily basis.

And please, share this story.  Uplift those you know who are going through a similar battle.  Let them know they're not alone.  No matter the outcome, we still have to endure... so let's stick together.

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.

One Day at a Time - An Update On Mom

Monday May 20, 2013

Just got an update from Dad:

"Di is still in the hospital for another 24 for observation.  They now are fairly confident that a vessel spasmed causing the arythmia.  She feels fine, but 48 hours is the time frame of possible reoccurance in this situation.

We now have to report to the (local) hospital on Friday morning at 5:00 am for a MRI prior to surgery.  We still don't know if her surgery will be postponed or not.  The local hospital is talking to the surgeons' office with details.  The local hospital is also taking measures to avoid potponement of Friday's surgery."

Dad is doing such a great job!!  He is informing immediate family of the latest details, and I am enforming everyone else through this outlet.

If you're just getting caught up, you can read the updates on Mom (Dianne) from the beginning.  In Order:

Never Give Up The Fight

It's The Calm

Hope Renewed

A Bump In The Road

It's been just over 3 weeks since we first found out, and what a whirlwind it's been!

I will continue to keep you all updated as things develop.

Our family cannot thank you enough for your continued support and prayers - and we need them to continue!

A Bump In the Road

Ah, Sunday... We had an entire day planned with fun things outside with the girls, a little grocery shopping, maybe some ice cream after dinner...

But something happened.

I got a phone call from my dad around 9:30 in the morning.

Mom (Dianne) had a heart attack this morning.

My knees almost buckled as he proceeded to tell me the few details he could muster.  He said they were still in the ER, and he didn't have many answers yet.

I immediately made arrangements for the girls to head to their Bumpa & Gwi Gwi's for a few hours.  I called both of my brothers to let them know what had happened, and we left for the hospital.

This time seemed different.  My dad seemed a little more "out of it", like he needed me.

When we got to the hospital, I gave hugs and surveyed her well-being.  She seemed ok.  She was unable to move, they were making her lie still until they determined it was okay for her to move or sit up.

I started asking questions.  This is what happened:

Last night she had been suffering from some pretty severe joint pain.  Severe enough that it brought her to tears.  She took some pain meds and went to bed.  When she woke this morning, her knees were still in a lot of pain.

They were drinking coffee this morning and throwing the frisbee for the dog.  Suddenly, Mom said that her chest was starting to hurt.  It got to the point that Dad felt the need to have her checked out by an EMT, so he called their neighbor, who is a firefighter for their city.  When he didn't answer, dad left to go over to his house.  As he walked out the front door, his neighbor was also, coming toward dad's house.  Dad explained what was going on, and the neighbor immediately called it in as a Priority 1. 

When the EMT crew showed up, they checked her out and determined she needed to be taken to the hospital.  They put her in the ambulance, my dad followed, and off they were.

She had just had an EKG this past Tuesday in preparation for her tumor surgery, and was completely cleared for surgery.

But on the way to hospital, she went into v-tach (Ventricular tachycardia - rapid heartbeat) and had to be shocked.

When they got to the hospital, she had many tests.  Of course, my dad was swift about letting them know about her brain tumor, and the upcoming surgery.  That obviously changed their course of treatment for the heart attack.

Initially, they were thinking her brain surgery would have to be postponed, that she would need stints placed in or near her heart and that she had major heart issues that have been overlooked.

However, all of the tests came back normal... boring.

No blockages, no stints, NOTHING.

They feel it was maybe some plaque that had broken loose, got stuck, and passed through.  They're not really sure, because nothing showed up in the tests, but they feel there was a blockage at some point that passed.

We thought maybe the stress on her body from the tumor had contributed to her heart attack.

Either way, they admitted her for the night.  She will be in the hospital until tomorrow.

At this point, we were told no stints are necessary, no heart surgery, Asprin for medication as she can't be on any blood thinners, and her surgery is still on for Friday.

She's a little cranky - understandably, tired and really ready to go home.

We could really use your prayers at this time.  We are hoping for no more hiccups before her tumor surgery.  Please pray for a smooth week.  Please pray for healing and peace for her.

Please pray that my dad continues to be her rock.  Please also pray that he is able to balance this situation, his full time job, the added responsibilities at home - and that he is blessed with the help that he needs right when he needs it.

I thank you for your thoughts and prayers sincerely - we couldn't get through this without them.

This week will be crazy, long, calm, short, whatever... it will just be.  Friday is such a big day - we just want to get her to that point.  Then we will hopefully have more answers, and hopefully have more of an understanding of what we're dealing with.

I'll keep you posted.  And I'll put this post up a couple of times so that everyone who needs or wants to see it can - no matter what time of day it is.

Till next time...

Hope Renewed

Thursday May 2, 2013

I got a rare early morning phone call today.  Mom called "just to hear my sweet voice".  It was 7:20 am.  Of course I answered the phone thinking something was wrong.

But nothing was wrong.

She was sitting outside, playing frisbee with their dog, watching the sun come up, and thinking...  Just thinking.

She didn't want to miss the moment to tell me how much she loves me.  And she wanted to tell me how proud of me she is for coming as far as I have recently.

The call got emotional at one point, but I tried to divert.  I knew she had an important appointment this morning with a potential Neurosurgeon that would handle her case.  I wanted to keep her spirits up.

She and Dad went to Southfield, MI today to meet with a Neurosurgeon, Dr. Ryan Barrett.

They. Love. Him.

A-typical of Neurosurgeons, he had a great bedisde manner, he was comforting, supportive, positive and patient.  I say a-typical because Neurosurgeons are brainiacs.  Perfectionists. Egotistical. Dry. Unemotional.

Not this guy.

Her surgery is scheduled for Friday May 24th in Novi, MI at Providence Park Hospital.  She will spend 2-3 days there post-op.  They were told there is little pain with this surgery post-op as well.  They will shave her hair just in the spot of the incision.  He will remove a piece of the skull, and remove what he can of the tumor.

They got some answers today FINALLY!

They were told for sure it is cancer.  We still don't know what type of cancer.  This "thing" now has a name...  Something, something, something Blastoma.  You might laugh, but I am getting this information from my dad, who is riding this roller coaster blindly.  I'm sure that the overwhelming amount of information they received was incredible.  The only word he remembered was Blastoma.

The cancer does not appear to have metastasised.  It appears to be primary.  I learned what this means just today.  To be primary means (I think) that this "tumor" is singular.  This is the one source of cancer in her body.  There isn't another "primary" cell or tumor that has grown to this spot.  The surgeon did agree that this tumor has been there for some time.

Before he can tell the stage of cancer, or the type, he has to get into her brain.  He needs to biopsy.  There's obviously only one way to biopsy a tumor in the brain (at least in this case)... and that's the surgery.

Dr. Barrett showed them the crucial parts of the brain that you don't want a tumor (as if you could choose), and where her tumor is is not there.  He explained that it is in a place that is fairly easy to get to.  Although hers is not in the "crucial" part of the brain, it is still inside her brain, not on it.  So the surgery will be tricky.

They feel they can remove "most of it".  Chemo and radiation are a sure thing after the surgery and that can be done by Oncology in Grand Rapids.

They were told that the outlook "looks good".

The deficits after the surgery are unknown.  She may be left with the deficits she has now - forgetfulness, loss of balance, disorientation, and some lack of eyesight / focus.  She may be left worse off.  It is unsure and too soon to tell.  So many things are unknown at this point.  But in the spirit of "one step at a time", at least now we have a surgeon that we trust, and is seemingly optimistic.

I received a message today from Di's best friend of 40-some years.  She lives on the East side of the state, and met with them before the appointment.  The night before the appointment, a story aired on their local news about this particular surgeon.  Read the story here: http://www.wxyz.com/dpp/news/cancer-treatment-saves-local-womans-life

It is the story of a woman who was treated by Dr. Barrett and "he saved her life".  She is "doing great and full of life again".  Mom's friend saw this as a sign.  And our hope is renewed every time we see these signs!

I was speaking with my dad this evening, and he expressed how amazing the outpouring of love and support has been.  They are humbled by the phone calls, texts, emails, Facebook messages, cards... you name it!  He was almost in tears as he expressed his gratitude for everything.  So, thank you.  As a team, as a family and as a community, we will carry them through this.

They were given the option to have the surgery as soon as next week. Mom said heck no! On May 11, they will be celebrating 23 years of marriage! Mom wants to wait the three weeks to give her some time to live and enjoy her family and friends. And they were told it's not an emergency. Obviously the sooner the better that we get that disease out of her, but a few weeks won't make much of a difference.

I will update with more information as it comes, but until her surgery I feel there won't be much more medical information to update.  But I will write about how she is doing, her demeanor, and how she's getting along.  Thank you for reading, and thank you for all of the support!  Keep it coming - it's still going to be a long road!

It's The Calm

I talked to Mom today.  She seemed in good spirits.  When I called she had some visitors that were just leaving.  She told me that they were all having a laugh at her expense because she keeps doing "stupid stuff", as she put it.  She said she keeps going into the wrong room of the house.  She tells stories about people she's talked to and doesn't remember if she was face to face or on the phone with them.  She can't type, she can't text, she can't spell.  She can't be alone.

She didn't once mention dying.  That's an improvement from when she first received the news.

It was nice to hear her laughing.  Even if it was at her own expense. 

Tomorrow she and Dad have an appointment with a Neurosurgeon.  I don't know his name, but I know that they are in the process of making sure they have the right Neurosurgeon before they proceed.  They've already seen one, and they didn't feel right.  They have a pretty good idea about the one they're seeing tomorrow, so hopefully we will have some more answers after that.

We still don't know what kind of cancer it is, or, as my dad put it, "if this 'thing' has a name".  We don't have a prognosis; we are just clinging to hope & faith at this early point in the game.

One thing mom said tonight was how much better she feels after getting so much rest.  She has been napping at her leisure, and getting pretty good sleep at night.  She feels more clarity than just a few days ago.

As far as Dad is concerned... well, he's just... Dad.  Being the rock for her, all the while trying to be the communicator to all of the concerned friends and family.  He's juggling a full time job, the normal household duties, phone calls, arrangements, appointments, dates, times, and everything else that's just "day-to-day".  I'll tell you what, I don't know how he does it.  He is seemingly juggling everything quite well, but asking for help when it gets to be too much.

We are taking things one day at a time.  One appointment at a time.  One phone call at a time.  One moment at a time.  It helps no one if we are all so overwhelmed and fall apart.  I'm trying to keep the information I have to give at bay, so as not to overload him.  I sent him 2 emails and one text today with names of highly recommended Neurosurgeons and Oncologists. 

The response I got back? 

"I'm starting to feel information overload". 

My response?

"Ok". 

My bad.  Sometimes I get so eager to help, as I guess most people would, that I forget what else he has on his plate. 

Once she gets established with a Neurosurgeon, and we set a date for surgery, or whatever comes next, then we can move on to the next task.

This is all new to all of us.  We are all just learning how to deal with something of this magnitude.  We have no idea what's around the next corner, but even though we don't know what to expect, we'll still be ready to face it.  What other choice is there?

I feel this is the calm before the storm.  And things are pretty chaotic right now.  Anyone who's been through this exact thing knows from their own experience what lies ahead.  Of course, every case is different, but the process is similar.

I cannot put into words the meaning of all of the prayers and thoughtful words of support from everyone - at least everyone in my world.  I cannot imagine the outpouring in their world.  Thank you so much for reading, passing the word along, praying, making meals, calling, checking in... you name it.  THANK YOU.

I will hopefully have an update tomorrow with the outcome of their appointment. 

Hopefully we can prepare for the next step.

Never Give Up The Fight

Monday April 29, 2013

I would imagine that most, if not all of us have lost someone near and dear to us.  Hopefully, this post doesn't end up being about loss, because it's not meant to be.  However, at this point in my life I am being faced with the thought of losing someone very near and dear to me.

In the very least, over the course of the next year, or years, I will watch this person endure what is probably going to be the most monumentous battle of her life.

I'm going to take you on this journey from my perspective.  I will be as factual as I can with the details.  I asked her if I could blog about this... starting now. Of course she said yes. I promised her that I wouldn't reveal anything super personal or anything that she wouldn't want the world to know. But she knows me. She knows that writing for me is better than any bit of paid therapy I can receive. As close as she and I are, she knows that this situation, no matter the outcome, will be very difficult for me, but I will be her rock when she's around. I will fall apart later. And that will show in some of my posts.

Our family just found out on Friday that my step-mom has a baseball sized tumor inside her brain.  And it's cancer.

Cancer.

I hate that word. 

The mere sound of that word sends my mind into a tailspin.

It's early in the diagnosis.  We know it's there.  We know it's cancer.  We know it's been growing for a long long time.  We know she has to have surgery.  And chemo.  And radiation.

What we don't know is what kind of cancer it is.  We also don't know for certain if it's a solid mass or if it "spiders" out, amoungst many other things.

She and my dad have an appointment tomorrow with the Nerosurgeon.  Hopefully we will know more then.

From what I've been told, this all started within the last week, maybe two.  She was extra-forgetful.  She started getting lost in her own home.  She made a doctor's appointment for Friday of last week, but called my dad to bring her because she had no idea where her doctor's office is.  She's been with her doctor for years. 

As soon as she got to her appointment and told her doctor about her symptoms, they were told to go to the ER THAT DAY.  So they did.  What followed was a series of tests and questions.  A MRI and CAT Scan later, they got the news.

She spent one night in the hospital.  On Saturday when she got home, she was disoriented and extremely exhausted.  She had hardly gotten any sleep the night before (or nights before that), and could hardly keep her balance.  Talking with her was reminiscent of what I would imagine talking with an Alzheimer's patient would be like.  She repeated herself many times - forgot many details of the sentence just before.  She couldn't find the seat that she was going to sit on without someone guiding her back.  A couple of times, she tried to sit and almost fell on the floor.

She forgot why she was getting up, or what she needed to do. 

She felt the need to discuss final arrangements.  She is prepared to make them.  And we openly talked about some of her wishes.  Needless to say, this has been extremely overwhelming news for both her and my dad to digest.

And of course, she is scared beyond belief.  I won't begin to speculate what she is scared of, but I would imagine it's what the rest of us would be scared of had we been told that we have two-ish weeks before surgery to hopefully find out what is killing us.  Or maybe she feels she has two weeks to say goodbye to everyone she knows & loves.  Maybe she is scared to leave my dad alone.  Maybe it's not even about the fear of what comes after dying.  I know she's not afraid to die.  Maybe it's the fear of the battle she is about to face - and what comes after when she survives.  Maybe it's the pain she will experience.  Maybe it's the thought that she will never be the same person, or she will lose memories of things she loves.  Maybe it's all of these things. 

I will say this.  Mom, if you're reading this, don't be filled with fear. 

The first time I heard this poem was from you.  You have always taught me about keeping hope and faith alive in the lowest points of my life, when it's sometimes hardest to have hope & faith.  Now, it's your turn.

One night a man had a dream. He dreamed
he was walking along the beach with the LORD.

Across the sky flashed scenes from his life.
For each scene he noticed two sets of
footprints in the sand: one belonging
to him, and the other to the LORD.

When the last scene of his life flashed before him,
he looked back at the footprints in the sand.

He noticed that many times along the path of
his life there was only one set of footprints.

He also noticed that it happened at the very
lowest and saddest times in his life.

This really bothered him and he
questioned the LORD about it:

"LORD, you said that once I decided to follow
you, you'd walk with me all the way.
But I have noticed that during the most
troublesome times in my life,
there is only one set of footprints.
I don't understand why when
I needed you most you would leave me."

The LORD replied:

"My son, my precious child,
I love you and I would never leave you.
During your times of trial and suffering,
when you see only one set of footprints,
it was then that I carried you."

GOD is going to carry you through this. 

I remember you teaching me about God closing doors in order to open a bigger one.  I remember you teaching me about all of the trials you and Dad have been through in life, and the one thing that never waivered was your faith.  Never.

We just had a conversation the other day about faith and how important it is to you to take time each day to tap in to your faith.  Keep that up.  I know it will be hard.  But not because you don't want to, but because of the physical toll your battle may take.  If you need me to read to you, I will.  If you need me to remind you, I will.  You are a beautiful, kind and giving person.  Never forget that. 

Never forget the many lives you have touched.  The lives you have saved.  The people you have blessed - just by giving of yourself whatever you had to give.  Sometimes, it wasn't much, or maybe more than you yourself had, but you gave it anyway.

Never, never, never give up this fight...  And I want you to know that if it comes time to give up, you're not giving up.  You're not letting anyone down.  For once in your life, don't worry about us.  We are carrying this load with you, and for you when we can.  You are loved.  You are cherished.  And WE will never give up. 

This is not goodbye.  We have many years left to enjoy each other.  Life events, birthdays, grandkids, great-grandkids.  We are going to take this battle one day at a time, one fact at a time, one moment at a time.  And we will do it together.  As a family.  Our family pulls together - the whole family - and we are strong!

Today, I asked her if I could get to writing.  She said of course... honestly, I don't think she or my dad know how to even begin telling all of their friends and loved ones.  Of course, the family knows, and those that they see on a regular basis.  If you are close to them and you are learning of this for the first time, please don't be offended.  They are focused on so many details right now, with so little time left to put them all together. 

We have begun making meals for them - meals that freeze and can be easily heated.  We're thinking RECOVERY.  When mom has that surgery, she will be in the hospital for a time.  When she gets home, the last thing Dad's going to want to do is cook.  Or clean.  Just little things like that.  We all want a piece of them right now, but without overwhelming, we're just letting them know that we're here.  Even if we're sneaking around in the background.

So, if it's not too much to ask, could you send up extra prayers for us?  Especially Dianne (Mom, Step-Mom, Grams, Aunt, Cousin, Sister, Wife, Daughter-In-Law).  I will be writing regularly throughout this journey.  If you know someone who is friends or family of Dianne who isn't connected somehow, please share this blog with them.  I will try to be as detailed and factual as possible - read as much or as little as you want.  This will also be one of our ways of getting news out to everyone.

And Mom, one more time... Hang tough, and NEVER give up this fight.  We're gonna be just fine.

*Ditto*... ;)