Thursday, May 1, 2014

...I can’t even begin to describe the pain my heart still feels every day…

...already another year has passed, and with that...May 1st brings {Brain Cancer Awareness Month} ...I'm going to start the month off with my family's dad's story...

A cancer diagnosis must be the worst news you can receive…but a brain cancer diagnosis truly has to be the most devastating kind of cancer one can get.  You truly lose yourself…your personality changes little by little, you are unable to care for yourself or even do basic tasks that a child could perform. Eventually you begin to feel hopeless and before long you know what is going to happen…and the thought is frightening for everyone around you…I can speak to this…because this happened to my family…this happened to my dad…
I will never forget , March 15th, 2010…it was the day that my life changed forever…it was the day that my dad told me as we stood in his driveway that he had a brain tumor. I stood there as I looked up at him and felt like I had just been punched in the stomach. He just looked at me with a brave face…a brave face that he carried with him for the next 21 months...8 days later we were in the hospital in Spokane, WA . He was having brain surgery.
We were all with my dad, before his surgery, we weren't sure what the outcome would be, we were told very casually that he might not recognize us or know our names once the surgery was complete, I don’t think that really registered. From that moment on I never left my dad’s side…he had always been there for me…all my life…for everything…there was no doubt I’d be there for him during this journey.

When my dad was coming out of surgery…this was the first thing that proved he was going to fight…he was able to tell my twin sister and I apart…we smiled and knew that Glioblastoma Multiforme Stage 4 Brain Cancer was in for a tough fight with my dad!
My dad just got out of surgery...greeted by his mom, my mom and my twin sister and myself.
My dad chose to do is treatments in Spokane, which meant A LOT of driving…2 ½ hours one-way…5 days a week…for 6 and ½ weeks. So on April 12, 2010, his treatments of radiation and oral chemo started. We were very blessed that my dad had such great friends at work and they did a lot of the driving on most of those days. So unless he was seeing a doctor…he went with them. On doctor days we went.
My dad would wear this mask each time he received his radiation treatments. It was extremely tight.
We started making some plans to make sure my dad was doing the things he loved…he played golf nearly every day…once he was diagnosed he was not allowed back to work since he used a gun. That was hard for him because he was already in the process of making plans to retire…needless to say, my dad never did retire. My dad loved the game of golf and some family member’s got together to put on a fundraiser at the golf course that my dad was at nearly every day to make sure one of his dreams would come true: to play at Pebble Beach. Just before this was to happen we got devastating news , my dad’s MRI showed recurrent tumor growth and within a few days his first GammaKnife was scheduled.

After a few weeks to recover all the plans had been made and my dad was on a plane and ready to play at Pebble Beach…and he had the time of his life!

My dad golfing at Pebble Beach. He said it was amazing!

In August 2010, my dad’s MRI showed that the GammaKnife procedure was successful and the tumor was shrinking. However, our smiles turned to tears in October, when his MRI showed there was more recurrent growth. The doctors decided to do another Gammaknife treatment. So many ups and downs. In December, we stayed in town and went to our local hospital for the MRI, we were so thankful that the results showed positive results to the last GammaKnife treatment…the doctors exact words, “the inner core is dying and the outer core is frazzled.” Thank you Lord!
…but just like that things start to change…Dad’s February 2011, MRI showed that there was aggressive tumor growth. He doctor was very worried. They didn’t feel GammaKnife would be a safe option any longer as it could cause more damage to his brain. They decided Avastin would be best at this point along with his chemo. So my dad had a Port placed and started infusions.

In April 2011, his MRI showed that the Avastin was working even better than expected! The Radiologist was well as my dad's team of dad continued with these Infusions every other week along with his Chemo...because it was dad was the meaning of the word FIGHTER...during that last year I saw him at many stages…where he was both physically and mentally exhausted...I hated seeing what Brain Cancer was doing to him...I hate what it was taking away from him...but I was so proud of him...his courage...his will to fight a disease that is said to be the deadliest form of Brain Cancer...he has always been my HERO...when I was younger he taught me to fight for what I believed in...and what I wanted ...and he was showing me how to fight for your life {literally}...and this fight we had no control over...but it was a fight that you couldn't give up on...I loved him so much…I still love him so much…
In July 2011, his MRI showed a new tumor in his right Gammaknife #3 was scheduled. But with cancer you’ve always got to be ready for surprises…right before my dad’s procedure we were told the MRI results showed there were actually two new tumors not one. Now his September, MRI showed continued tumor growth along with another new tumor in his left temporal lobe.

We all were devastated but my dad said I’m still going to fight!
By mid October, dad wasn’t doing well at all. At this point the chemo was no longer working and the doctors wanted to stop it. They said they could do one more GammaKnife on the new tumor only. They could try some new medications. My dad wanted to push forward. I admired his will and determination so much…as I know he was only fighting for all of us at this point…my mom, Mona, Gina and myself.

The same day I returned home from my trip to Indiana, I drove Dad back to Spokane for is 4th and final GammaKnife treatment.  At this point dad was sick a lot, feeling awful most days and sleeping more and more and now not eating much at all. He has been fighting for 19 months.
Right before my 37th birthday we were told his treatments were no longer helping him…I can say at that moment I might have had some sort of a breakdown. I felt like I needed to be the fighter for my dad and fight for him…he wasn’t in that meeting room with a huge table full of chairs where the doctor is saying I won’t treat him any longer...I was going into shock, I was like you don’t get to make that decision for my dad…no one was saying anything…my mom just sat there, my sisters just sat there, I started to cry, I think I even yelled…they couldn’t just give up on him…but they did…and I knew what that meant…I knew what was going to happen…my dad was going to die…

There is NO CURE for this horrible disease…our miracle never happened…I still pray every day that another person…another family will NEVER have to go through this…my dad’s 21 month battle with GBM taught me so much…yet also stole so much from me! ...yes I know how extremely selfish that sounds...

On December 10th, 2011, was the last day I ever spoke to my dad. It was the last day I ever said, “I love you.” It was the day that Glioblastoma Multiforme took the most important man from our family. Cancer doesn't care who it chooses to destroy...cancer doesn't care! We need to care and build as much awareness in our neighborhoods, towns and communities, because it's happening everywhere! Know the signs and what you can do to help the doctors if it happens to you or someone you love because believe it or not you can help them in the VERY BEGINNING if you get this diagnosis. You just have to be informed and proactive.

I can’t even begin to describe the pain my heart still feels every day…


1 comment:

Beth said...

I know that this has been a long and difficult road for you to travel...and that the hurt still remains, but I am thankful that we have had each other to help us get through the tough times.
Little did I know that December 2010 would be the beginning of a wonderful friendship....and to think I nearly deleted the post I had typed up.
Thanks for being there for me and for being my friend. Sending hugs and love to you and your family during this time.
Gray does matter...LOVE to you!