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.



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