Wednesday, November 20, 2013

Caught Between Grieving and Living...

Tuesday November 19, 2013

While I realize it's been almost 2 months, or maybe it has been, the time has just absolutely flown by.

This post is to update everyone - all over the WORLD - who have been praying for Mom (and Dad).

The last I wrote, Mom had 4 radiation treatments left, and we were going to begin to wean her off from the steroids. The tumor is aggressive and we were going to treat it aggressively. 

We stuck to that plan, Mom finished her chemo and radiation treatments on schedule.  We were hoping to begin a round of intravenous chemo as well - the chemo she had just finished was pill form.

She was also successfully weaned off of her steroids.

In the middle of September, she began having seizures.  Long ones.  These ultimately led to another admission to the hospital.  Thus began the balancing act of all of her meds.  Dad and her doctors had to balance her meds for her heart, her cancer, her depression, and now seizures.  Her platelets were low, and she had fluid buildup on the brain.

We got the seizures under control, got the meds all figured out, but with her platelet count so low, she was no longer a candidate for more chemo, or any other aggressive treatment.  So, we waited for her platelet count to come back up - we were still going to fight!

In the beginning of October, Mom was diagnosed with Pneumocystis.  Pneumocystis is a form of Pneumonia that greatly affects people with compromised immune systems - especially cancer patients.  So we had two weeks of more steroids and antibiotics.

All the while, Mom's tumor is still growing (we can only assume), at least, it wasn't shrinking and we are unable to treat the tumor because we are being sent on all kinds of rabbit trails (seizures, infection), and in the meantime, Mom is growing weaker and weaker. 

She can no longer walk without assistance - she uses a walker to get around.  She needs assistance with bathing, fixing food, using the restroom, etc.  She is sleeping more and more.  She cannot position herself in bed - it takes Dad or another person to help her get comfortable so she can rest properly.  An ever-increasingly taxing job to care for her at home.

When she was in the hospital for Pneumocystis, one of her physicians recommended Hospice.

The word.


I think hospice has a stigma - we all know what hospice really means.

But for those of us who have never used hospice services, the stigma may be unfair.

We met with a caseworker and decided to admit Mom into hospice care on October 14th.  We were hoping for some help at home with Mom on a regular basis - but we quickly learned that it would still be up to us to care for her - that hospice's focus would be on her comfort and making sure that she is comfortable and happy for as long as she can be.

Over the course of the next 4 weeks, Mom's meds were adjusted to give her clarity and freedom from "fogginess", shakiness and that feeling like she's going to "tip over".  Mom got stronger - much stronger than we had seen her in weeks.  We met some amazing hospice workers - and Mom made some new friends and connections.  The hospice personnel that we met and that worked with Mom were nothing short of angels.

We took turns caring for Mom, day in and day out.  Dad got the hardest shifts - the night time. 

We watched her have amazingly good days.  Days where she laughed, remembered most things from her life, and even some things from just the day before (which was nearly never at that point).  She was almost "speedy" with her walker, and the shakes were gone.

We also watched her have terribly hard days.  Days where she sobbed for hours - seemingly having a full understanding of what was happening to her.  We watched her try to understand what she was facing, what she was going to have to endure.  She would ask the same questions, having forgotten the answers she was given just moments before.

And then repeat the process the very next day.  We never knew until she woke up what kind of day it would be.

Over time, her appetite gravely decreased.  She began to walk slower and slower.  She struggled to position herself on the couch, or in bed.  She was seemingly more and more confused about simple things.  And this seemed to change daily. 

My Dad and I had a conversation on his porch just a couple of weeks ago.  It seemed eerie that she had been doing so well.  So well, in fact, that we were once again, cautiously optimistic about the near future.  All the while, we were very much enjoying the good days that were at hand.

And then this past Saturday, she fell.  After taking a nap, she got up, as she normally did, to use the bathroom before joining my dad in the living room, and she fell.

After hearing the "THUD", my dad and Aunt who was visiting rushed to Mom's room to find her on the floor.  Dad laid on the floor with her trying to assess the situation, to see what, or if she could move, if she could get up, anything.

While waiting for the hospice nurse to come, Dad dead-lifted Mom onto the bed, where they laid until the nurse finally showed.

An ambulance was called and Mom was taken to the hospital.  After tests and scans, it was determined that she has compound fractures in at least 3 of her vertebrae. 

At first we were told that she would be in a back brace for many months.  Well, knowing she was in hospice care, we weren't sure she had "many" months.  And how are we supposed to care for her if she is predominantly immobile?  And what kind of quality of life is that for her?

Well, her doctors had a solution that would all but eliminate her pain - at least for now.  So, yesterday she had surgery on her fractured vertebrae.  I believe she will still need a brace, but not for nearly as long as she would have without the surgery.

The answer to our questions about how we care for her now was glaring - staring us right in the face.  A hard reality that I'm sure will take some time to "sink in" and "forgive", at least for me.

Mom was admitted to an inpatient hospice care facility just yesterday.

Dad talked with her at the hospital and told her that she will most likely never return home, and that this is the place she will find her final rest.

He said she took it well, and understands that we can no longer care for her at home on our own.  He said she understands that it was the right decision to make.

That doesn't make it any easier to handle.

I can only imagine the feelings going through my dad's mind - I won't even go there.

As her daughter, I feel helpless as well. 

I haven't had the opportunity to visit the facility yet, but Dad says it's beautiful.  I've read Facebook comments from her sisters who received texted pictures of Mom from Dad with Mom's big smiling face. 

That last sentence takes me to another place - a place that I'm not ready to go yet.  I'm going to focus now on her face, her smile.  And I will do my best to visit all that I can, to bring her cheer, and as much happiness in what time she has left.

The holidays are quickly approaching.  She loves the holidays.  I want to be with her for the holidays, and I intend to figure out ways to bring the holidays to her. 

These next weeks, months, or however long we have left will be the most trying. 

Please continue to pray for peace - for Mom and for Dad.  Please wrap your arms around them so they know they are safe.

Thank you for your continued support through all of this.  As things progress I will do my best to update.

Friday, August 23, 2013

"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.

Thursday, July 18, 2013

In Dad's Words, "Get Me Off This Ride!"

Thursday July 18, 2013

While I realize it's been a month since I last wrote, a lot has happened.  Not only with Mom, but in my own personal life as well.  Finding the time to actually sit, much less sit and write has been difficult. 

But it's time.  It's time to update.

I can't thank you all enough for coming here as often as you do to read the updates.  So many of you depend on this blog for updates on your friend, sister, mom, colleague - whomever she is to you, and it means so much to us.

The last update was titled Fear Has Crept In, and it was accompanied by A Lesson On The Brain.  At that time, we were still just learning about this monster, and what it was doing to our Mom, sister and wife.

We are still learning.

But boy have we learned a lot.

Mom spent 3 whole weeks at Mary Free Bed Rehabilitation.

In those three weeks, Mom had many triumphs, and some setbacks as well.

And so did Dad.

The first two weeks were pretty "normal" if you can call them that.  By normal I just mean routine: wake up, therapy, rest, lunch, therapy, rest, dinner, consult, visitors, etc.  Next day: repeat.

She was originally scheduled to come home on Tuesday July 2nd.  But on Saturday June 29, Mom had a seizure. 

And then she cried, inconsolably, for almost 3 days.

And it was just her & dad.

For three days.

Dad called Mom's sisters to let them know what had happened.  But to alert the rest of us would've brought on a "phone storm" i.e. calls, texts, messages, questions - that he just couldn't; physically, mentally, emotionally couldn't handle.

So we found out mid-week what he had just gone through.

He was also protecting us from seeing her in such a state as he himself had never seen before.

Dad had learned in those few days a little more about this monster they call GBM.

He learned she will most likely never be cancer free, and there is no cure for this disease.

He learned that this will most likely kill her.  When?  They can't say.  But we can read statistics.  Statistically, every day we have with her now is a blessing.

I say most likely, but they spoke more in absolutes.  I hate absolutes.  Especially in this case.

He and Mom talked about her options.  She wants to try chemo and radiation.

And that's a whole other animal.

Every person is different, but still.  It's chemo and radiation.

Mom said that she will decide when she has had enough.

On the side and away from Mom's earshot, Dad asked the question that I'm sure every first-time Stage 4 Cancer family might ask... How will my wife finally pass?  Will she be in pain?  Will she be suffering?  What can I expect?

The answer he received was as gentle, but honest as I'm sure we could expect.

He was told that the brain doesn't feel pain, but it senses pain for the rest of the body.  If you were to pinch Mom, she would feel it, but only because her brain told her body to feel it.

As this progresses, her brain will slowly lose the function to sense pain for the rest of her body.

He was told that most patients pass while they're sleeping, or they at least pass quietly, and that it isn't painful.

But what about the weeks and days before that moment?

Well, that is yet to be determined, but again, there are statistics, and every person is different.  We will take things one day at a time and give her as much comfort and reassurance as we can.

On Thursday, the Fourth of July, I spent about 3 hours with her & Dad.

I sat through her therapy, in both awe and disbelief at what I was seeing.  I was so proud of her, as I would be watching my own children accomplish things they couldn't just a few weeks before.  But I was also sad.  I was viewing my mom as "childlike".  I tried to chalk it up to the cycle of life.  Aren't kids supposed to care for their parents in later life?  Isn't that the natural cycle of life?  But this was different.  She's not 90 years old.  She's not even 60 yet.  This monster has come and stolen my mother's personality and most of any resemblance of the woman I used to know.  Sure, we see glimpses now & then, but overall, she's just so different.

We talked about the rough week she had had with her seizure and all the crying she did.

She understood what happened, but it was all a fog for her.  She was on so many medications, that trying to remember was near impossible for her.

She kept saying that she felt "foggy" and she didn't want to be so "foggy".  She wanted to think clearly, and to be able to enjoy things like she used to.  She was looking for a moment of clarity.

So I gave her one.

I recently became engaged, and I hadn't shown her my engagement ring yet.  So, I walked up to her and held out my hand to show her.

She gently grabbed my hand, held it to her face, and started crying.

Happy tears.


And then she didn't let go.

I sat next to her and her gaze went from my hand to my face, and back.  She said she was so happy for me, and it was everything she wanted - just to see me happy.

We held each other for a few minutes, and she wiped her tears.  She loved that moment.

And so did I.

Well, the seizure had also postponed her chemo consult with her Oncologist.

And her homecoming.

So we looked for little things coming up that she could be excited for.

The next day, July 5th, she came home.


For good.

For now.

As she got used to the comforts of home, she also had to learn how to get around, and be more independent than she was used to.  She has her best friend there with her every day to assist, but each day she made progress.  Big or small, it was all progress.

She made some meals by herself.  She carried her coffee through the house, walking unassisted.  She gets up and gets what she needs from the kitchen without help.  She goes outside to sit on their shade porch for fresh air.

Either her best friend or Dad takes her for walks every day to keep her blood flowing, and to help her get some fresh air.  This also helps to keep her somewhat limber and alert.  Plus, she loves the outdoors.  And she can play frisbee with her dog - a pastime she has always loved.

Last week, she had her chemo consult and they decided to start her chemo on the 23rd of July.

After the consult, Mom said she felt like she has some hope and something to live for.  Not just a death sentence.

She also got fitted for her mask for radiation:

As the temperature rises (heat index over 100 degrees) in the heat of summer, Mom and Dad don't have Air Conditioning.  Dad also told me that their refrigerator quit working, and they were reduced to using the spare, smaller one in the basement.  Dad's lawn needed to be cut (the neighbor had done it for him the week before), and when he went to use the vacuum, he realized it was broken.  He had a mountain of bills to scour through - most had been opened, some had not.  They come in droves these days; too fast for Dad to keep up with.  Here's the link to Mom's Fundraiser, should you feel the desire to help financially.

He was having a very rough week, to put it mildly. 

Each day, he goes to work and comes home to the huge stack of bills that keep coming.  He assists with Mom to give her best friend a break.  There's information overload, appointments to make, and keep, phone calls to make, and return, dinner, laundry, and conversation with Mom that is repetitive and sometimes exhausting... when you're already beyond exhausted.

He does it all with a smile, and wakes up the next morning to do it all again.  She is his best friend in this whole world.  She is his life partner, his beautiful bride whom he loves and cherishes more than anything.  No matter the circumstances, he will love her and care for her until the end.

But Dad needed a break too.

My fiance went to the house on Friday to mow Dad's yard and touch up the landscaping a little.  While he was there, Mom's best friend told him that Dad could really use a break and asked if there was anything he and I could do to help out.

So on Saturday my fiance and I took Dad golfing.  We didn't give him the option to say no, or to tell us that he had things he needed to get done.

We started with 9 holes.  We didn't talk about Mom, or bills, or work.  We just laughed.  We had a few beers, enjoyed the amazing weather, and let Dad take a load off.

9 holes turned into 18.  We had so much fun!  It was SO good to see Dad laugh and enjoy himself, and us - something - as we hadn't seen that in a while.

I'll admit I was sad when we dropped him back off at home.  I was sad because he had to go right back to his "new" life.  I feared he was beginning to resent his situation.  We had so much fun, but he had to return to reality.  I wanted so badly to take him away longer.

But he was happy as a clam.  The reset button had been set, and the next time I spoke with him he had organized the bills, made phone calls and taken care of some things he hadn't the energy to do before.

Someone had anonymously sent them a room air conditioning unit.  He said it brought the temperature in their house from the 90's to the low 80's.

He also shared with me that Mom's latest MRI had shown some tumor regrowth already.

So they started chemo and radiation a week early.

Mom is now walking with a cane so that she doesn't have to hold the walls to get around.  This is a little more freedom for her.

So she will do 30 days of radiation and chemo.  And another "new" routine ensues.

So far, she has not felt any ill effects of the treatments.  This is wonderful news!

Her goal is to make it to my wedding... on her birthday - August 1st of this year.

We chose that date for many reasons, but the fact that it's on her birthday and she will be able to come is an extra blessing.

After the wedding, we will have new goals for her.  Daily goals, weekly goals, and longer goals.

I have some projects up my sleeve that I'm going to give her this weekend to help keep her busy and involved in the planning of the wedding.  I know this will bring great joy to her, and also help her stay task-oriented.  It will help prevent her from wallowing or feeling "foggy".  It will help to give her some purpose.

Amidst the storm, we have seen the sun.  We have been amazingly blessed... and the blessings keep coming.  Our family is overcome with emotion and gratitude to the people who have blessed us with a hand (or an air conditioner), time, kind words... everything.

Life is short.  Life is precious.  We are smelling the roses, although the ride won't stop to let us off.  We will continue on as we have been, but please know that we cannot do it without the love, support and prayers of everyone out there who can't be here.

All I can say is "Thank You".  From the bottom of my heart.

Thank you.