After – 3 Years 4 Months 6 Days

This was our 4th Memorial Day without my dad.  It is still hard to comprehend that it has been that long.

These past few weeks have been hectic at our house with some big milestones.  My son graduated from high school and my daughter was baptized.  I remember one of my first thoughts after dad was diagnosed was that he was going to miss these specific events.  The few weeks leading up to all this were hard.  I would cry every time I thought about it. The graduation didn’t end up being as hard as the baptism.  My dad would have been the one to perform my daughter’s baptism.  Instead my brother did.  Which was wonderful.  We (My brother, Rachel and I) had a little melt down cry in the hall right before he did the baptism.  But it turned out beautifully.  My dad was there, we could feel the peace surrounding us.

When they posed for these pictures my mom said “Leave room for grandpa.”

We’ve been helping my mom clean out her house.  It’s amazing what you can accumulate in 45 years of marriage.  I found one of my dad’s journals he kept when I was 10-15 yrs old.  I’m not all the way through it yet but it is comforting to be reading his words.

Thank you all for your kind emails and comments.  I read them all and I apologize if I don’t respond immediately.  I do pray for you and hope you all have peace in your experiences.

After – 2 Years, 11 Months, 3 Days

Someone posted this on my Facebook today in our GBM grief group.  I am taking no credit for it.  I did not write it.  It was written by a RSnow on Reddit about 4 years ago.  It is probably the best description of grief I have ever read so I wanted to share.

The question was “My friend just died, I don’t know what to do.”

Alright, here goes. I’m old. What that means is that I’ve survived (so far) and a lot of people I’ve known and loved did not. I’ve lost friends, best friends, acquaintances, co-workers, grandparents, mom, relatives, teachers, mentors, students, neighbors, and a host of other folks. I have no children, and I can’t imagine the pain it must be to lose a child. But here’s my two cents.

I wish I could say you get used to people dying. I never did. I don’t want to. It tears a hole through me whenever somebody I love dies, no matter the circumstances. But I don’t want it to “not matter”. I don’t want it to be something that just passes. My scars are a testament to the love and the relationship that I had for and with that person. And if the scar is deep, so was the love. So be it. Scars are a testament to life. Scars are a testament that I can love deeply and live deeply and be cut, or even gouged, and that I can heal and continue to live and continue to love. And the scar tissue is stronger than the original flesh ever was. Scars are a testament to life. Scars are only ugly to people who can’t see.

As for grief, you’ll find it comes in waves. When the ship is first wrecked, you’re drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it’s some physical thing. Maybe it’s a happy memory or a photograph. Maybe it’s a person who is also floating. For a while, all you can do is float. Stay alive.

In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don’t even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months, you’ll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out. But in between, you can breathe, you can function. You never know what’s going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything…and the wave comes crashing. But in between waves, there is life.

Somewhere down the line, and it’s different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or landing at O’Hare. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you’ll come out.

Take it from an old guy. The waves never stop coming, and somehow you don’t really want them to. But you learn that you’ll survive them. And other waves will come. And you’ll survive them too. If you’re lucky, you’ll have lots of scars from lots of loves. And lots of shipwrecks.

Time

After – 23 Months + 17 Days

It’s coming to that time of year I hate. The holidays are over.  We are in our bleak winter inversion days.  It’s cold and dark and seems like there is no end to winter in sight. And it is almost February.  I HATE February.  My biggest hope this year is that we can make it through February without anyone dying. (Knock on wood.)  This year will mark the 2 year anniversary of my dad’s death and one year since my grandfather died. (Oh and my 45th birthday.)

I don’t want this to be a doom and gloom post.  Especially with how great a tribute my last post was to so many brave people that have fought the battle of GBM.  So I want to focus on some of the things that I have learned since my dad’s diagnosis in 2012.

* Life isn’t fair. GBM is the shittiest most horrible thing I have ever experienced.  My dad was the most kind loving person I have ever known.  He didn’t deserve to die the way he did. (No one does.)  But things happen for a reason. We can be mad at God and the world for having a loved one go through this.  But there is a reason.  You just have to find it. It took me a year and a half to figure it out.  But once I did it put a little more perspective on the whole situation for me.

* Life goes on.  No matter how dark and heavy those months were after my dad’s death it did get better.  I didn’t think it ever would. But slowly it didn’t hurt so much. I could breath again.  I didn’t cry every time I was alone in the shower or the car.  I laughed. Don’t get me wrong, I didn’t stop missing him.  I still think about him at least 10 times a day.  But the sharpness of it is gone.

* Family is everything. I take each day with them as a blessing.  I tell them I love constantly.  They probably get sick of it.  I don’t call my mom every day like I did the first year after dad died.  But I do talk to her at least 3 times a week.  It has never been like that between us until dad got sick. I love our relationship now.  She has always been a good mom.  (Although in my teenage years you would have never heard me say that.)  But now she is my friend too.

* We can “What if” and “Coulda, woulda, shoulda” our experience forever and it will never change the way it all happened.  You have to let it go.  This is one of the hardest things for me.  Did we make the right decisions? Should we have tried the Avastin? Should we have given him more pain medication?  Would it have made a difference if his idiot doctor had diagnosed him sooner?  None of that matters now.  It can’t be changed. I just have to believe that we did the right things and stop beating myself up about it.  Once I did that my grieving process seemed to move forward.

* My mom’s philosophy is right.  There is a time to grieve and then after awhile you are just feeling sorry for yourself.  Not everyone grieves the same way, or in the same time frame.  But there is a point that you just have to be done.  Whether that is 1 month or 1 year it does have to end.  This is cliche, but we all know our loved ones would never want us sitting around feeling sad and stopping our life and happiness because they died. I know my dad wouldn’t.  I know I wouldn’t.

* Therapy is wonderful.  People going through this always ask me what helped me the most after my dad died.  A grief counselor. I wish I had gotten one sooner.  Probably even before he died.  That was my first big step out of that dark hole.

The day I left to go help my mom that terrible awful week before my dad died (which is actually 2 years from today) I wrote this on my husband and my bathroom mirror.  It was the first time we had really been apart for 5 years.  I was leaving into the unknown.  I was scared. It’s still on our mirror 2 years later. It reminds me how weak I thought I was but how strong I really am.

The biggest thing I learned from all of this is no matter how many times you think you can’t go another day, hour, minute, second,  you really can.

Beautiful Faces

I have started this post and deleted it a million times this week.  I want it to reflect the great amount of respect and love I have for the people it is about. I have never met any of them in person.  But they have been a big part of my healing process over the past 22 months.

Since my dad’s diagnosis of Glioblastoma in March of 2012 I have scoured the Internet for as much information I could.  I wanted to educate and prepare myself for what was going to happen to my dad, and also get an idea of what my family was going to experience.  As most of you know the internet is a scary place to start looking up GBM.  There isn’t much, if any, positive hopeful information out there.  Even the ER doctor that initially diagnosed my dad warned me not to go home and google it.  (Which if you have read any of my blog know that I am google obsessed so it was the first thing I did.) One positive thing I did find on the Internet was a group on Facebook.  Simply titled Glioblastoma Support Group. I joined it as soon as I found it.  It was the best thing I ever did.   It was comforting to find so many people feeling the same things I was.  After dad died I moved over to the second group associated with it called The Next Step (Coping after a GBM Loss).  There are currently over 1,000 members, all people that are dealing with the grief of losing a loved one to GBM.

Glioblastoma Multiforme is actually considered a rare cancer.  An average of only 22,000 people per year in the United States are diagnosed with it compared to 295,000 people per year in the United States diagnosed with breast cancer. (These are numbers I have found on the Internet so I am sure they are not 100% accurate, but it does give you the general idea of the difference.) There are millions of sites and foundations dedicated to breast cancer.  The whole month of October is pink for breast cancer support from yogurt lids to NFL football players wearing pink socks.  It makes me mad.  There IS a month dedicated to brain cancer.  I had to google it to find out which one it is (May) because there is no big hype about brain cancer. No announcement on the news.  No gray ribbons tied to trees. Nothing said about brain cancer, ever really.  Until now. Until Brittany Maynard.

Brittany Maynard has been the face of Glioblastoma the past few weeks.  (I am not going to write my feelings about her situation in this post, as I already have here.)  It has caused a media uproar that I finally have had to just ignore because it makes me very frustrated.  This is why. A couple of weeks ago I was at the dentist and in the magazine display was the People magazine with Brittany on the cover.  Of course I had to read it.  Afterwards I sat it down and looked at my husband in tears.  “Why are you crying?” he asked.  I couldn’t stop my angry words “My dad should be on the cover of this magazine, not her.  All the others that have fought this beast to the end should be on the cover, not her.” He took my hand and let me cry for a minute and then said “Well at least she is making more people aware of this type of cancer.  That is a good thing.”  Yeah yeah, he was being logical and level headed about it. I was being the hormonal crazy woman in the dentist office with the front office staff staring at me.

As soon as I got home I got on Facebook and wrote a post on our group wall about how frustrated I was about the cover of the magazine.  I inadvertently started a shit storm.  All of us have been through the end stages of GBM.  We all know how bad it is.  We all agree we know why Brittany chose to do what she did.  But we don’t all agree with whether it was “right” or not.  I respect everyone’s opinion and beliefs.  I felt horrible that I had stirred up so many emotions in our group meant to support each other.  I finally pulled the post down after about 160 comments.

There will never be a cover of a magazine showing all of our loved ones that fought so bravely to the end.  No people writing long newspaper articles or news broadcasts about how inspiring they are for what they did.

But there will be this blog post.  (Even if it is just my little blog that has probably 20 readers.)

My friends on the Facebook group I mentioned above willingly shared these pictures with me. These are pictures of their loved ones.  Some of the other faces of GBM.

Ray, 47,diagnosed on 4/22/2011 and died 4/2/2012.

Robert E. Bailey. Survival time after diagnosis 27 months.

Jack, 63, died 9-22-2010, 7 months after diagnosis.

Dave, 58,First seizure Aug 16, 2012, died Aug 28, 2014.

Oz, 60, passed away 12/23/2013 three months after diagnosis.

Robert, 73, died October 11,2013, 5 months after diagnosis.

Terry, 52, died 11/9/2011 – 31 days after diagnosis.

Bonnie, diagnosed February 2012. Died 2 years after diagnosis, February 2014.

Igor, 62, diagnosed Sept. 9 2013, died June 1 2014 after 8.5 m fight.

Merv, day after craniotomy, Sao Paulo Brazil, June 2013

Dale, 60, diagnosed October 2011. Died January 2012.

Steve, 63,  Diagnosed June, 2009. Fought the huge fight for 3 yrs. 8 months until Feb. 2013.

John, 58, died 4/17/2013, 9.5 months after diagnosis.

Maynard, 79, diagnosed 3/2014  passed on 4-10-14.

David, 68, diagnosed 4/1/2011, died 3/22/2012.

Jimmy, 58, died July 22,2014. Eleven months after diagnosis.

 
Maureen, 76, passed away 9/10/2014, four months after diagnosis.

 
Megan, was diagnosed on December 1, 2004 at the age of 16.  passed on August 10, 2012 at the age of 23.

Nancy ,50, diagnosed 10-18-2005 died 2-14-2006.

Stephen,29, Diagnosed 3/24/14 passed to glory 9/4/2014.

Craig, 43, Diagnosed 2/14/10 passed away on 11/21/2013, 45 months after diagnosis.

Kathy, diagnosed July 2012 fought for 20 months and passed on March 20, 2014.

Brent, 38,  died October 24th 2011, 17 months after diagnosis.

Jay, 56, diagnosed Dec 11th, 2013. Died Aug 11, 2014. 8 months to the day from DX.

Nicky, 32, Passed March 13, 2014 after battling brain cancer for 9 yrs.

 
Passed away 11/4/12 4months after diagnosis

Mike,48, diagnosed October 2012 passed June 21st, 2014 after a 20 month battle.

Carol,72, died April 7, 2013, 8 months after diagnosis.

Jacqueline, 75, Passed away 5/19/2013, 7 months after diagnosis.

Evelyn. Passed 9-4-14, 7-1/2 months after diagnosis.

Bill, 52, diagnosed 4/22/2011 and died 6/5/2012.

 
Sarah, 77,  died 11-15-10 after fighting 21 months.

John, 51, passed away 22nd May 2013, 3 months after diagnosis.

Thomas, 66, died March 10, 2012 3 months after diagnosis.

Jeanette, 76, died August 7, 2012, 4 months after diagnosis.

Nick, 27, diagnosed 4/13/11,  lost his battle 9/25/2012. 17.5 months from diagnosis.

John, 59,  diagnosed  4/6/10, died on 3/31/13, almost 3 years after diagnosis.

Kal, 55, diagnosed September 25, 2010, passed away June 8, 2014.

Mark,58,diagnosed 8/7/13 fought for 11.5 months. Left us 7/27/14.

Jeff diagnosed April 22, 2013 surgery April 27, passed away 11 months after surgery March 27,2014

Gregory Kilbourne, diagnosed 2/24/2014, gained his wings 11/3/2014

Penny, diagnosed 8/2/14 and passed on 10/24/14.

Cindy, (in the hat), diagnosed June 2, 2009 fought until she earned her wings Sept 16, 2012. 3 years, 3 months, 14 days.

Gary, diagnosed 1/23/12 passed away 9/18/12.

Rosemary, 64, diagnosed 4-25-14 passed 10-27-14 six months after diagnosis.

Judy, 69, diagnosed 10/17/12, passed 11/3/12 (just days after complications from GBM resection surgery).

Robert,  11/21/1962-09/24/2014.

Colin, 51, diagnosed  9/19/2013 passed 11/13/2013.

Juliette, diagnosed 9/15/2014, gained her wings on 9/17/2014.

Scott, 43,  diagnosed 7/7/2011, joined the Angels in heaven 08/02/2012.

Ron, 10/30/48 -12/18/05.

Bill, diagnosed July 2011, died Nov 2012.

Dennis still fighting after 29 months.

After – 20 months – Service

This is a heart wrenching situation and I don’t know how I feel about it.  You can read the full story here.  Short and condensed version of this is she has been diagnosed with GBM and has moved to Oregon to be able to legally end her life on her terms, when she wants to.  It is called the Death with Dignity Act.  It is only legal in 4 other states besides Oregon (Washington, Montana, Vermont and New Mexico.)  I’ve never heard of it before.

I’ve seen the end stages of GBM.  I watched as it robbed my father of himself.  I watched him die for 9 days.  If it were me I think I would want to go on my own terms. I would want to spare my family the heartache of seeing me decline, having to take care of me for weeks and weeks before I finally died.   But I strongly believe everything happens the way and when it does for a reason.  If I hadn’t had those 9 days with my mom and sister I don’t think we would have grown so close and formed such a strong bond, one we didn’t have before.  I wouldn’t have had the time to take care of my dad and give to him after so many years of him taking care of me.  It would have deprived so many people the chance to do service for our family.

Service.  Kind of a stupid concept when I first heard this idea from my best friend Donna.  It was during one of those horrible 9 days that I asked her why we had to wait so long.  Why didn’t God just take him now?  What was the point?  She said that this whole experience my dad was going through wasn’t just about him.  It was about my family.  It was about all the friends and family that were helping one way or another.  I was mad.  Why did my dad’s disease and dying have to be used as something to make other people feel better about themselves?  Why did God choose for MY dad to get brain cancer? What did I do so wrong in my life that I needed to learn a stupid lesson like service THIS way?

Then I thought about it some more.  My father was the most kind giving person I have ever known in my life.  I’m not just saying that because he was my father.  He seriously had no ill feelings towards anyone.  Never said anything negative about a person.  He would do anything for anyone pretty much no questions asked.  My dad always wanted to help people feel better about themselves.  He would have wanted to give them opportunities to serve the Lord.  I’m pretty sure he wouldn’t have chosen getting brain cancer and dying as his preferred way to do it,  but it is what it is (as he would say).

I found this quote here.

As you devote yourself to serving others, you will draw closer to Heavenly Father. Your heart will be filled with love. You will learn that service and sacrifice are ways to overcome selfishness. You will enjoy happiness that comes only from giving service to God and others. Your capacities will increase, and you will be an instrument in God’s hands to bless the lives of His children.

So in my father’s case I know he wouldn’t have chosen this option to end his fight with GBM.   I think that Brittany Maynard is a strong inspiring woman.  Her going public with this makes me admire her even more.  I have read the comments on different articles about her that have been so cruel and uncalled for.  Her intentions are pure.  She loves her family.  She wants to spare them from the way this all ends.  She wants control.  If you have read my blog even once you know how I feel about control.  So I wish her and her family peace and comfort in the days to come.

After- 15 Months – Memorial Day

It’s actually hard to believe that it has been almost 16 months since dad died.  Those first few months I never thought I would feel happy again or enjoy life.  That was a dark and bleak time.  I miss my dad everyday. But I don’t ache anymore.  I didn’t think I would ever be able to say that.

We went down to my mom’s for Memorial Day and went to my dad’s grave and my grandfather’s who just recently passed away.  Many of my cousins were there.  It seems we only get together for funerals and cemeteries this past year or so.  It was good to see everyone.  We had a nice lunch together afterwards.  It was strange not having my dad and especially my grandfather there.  Gatherings seem to be getting smaller, even if it was only by 2 people.

My mom is doing well.  She has put in a request with her church to go on a service mission for year.  So she could be leaving Utah and going who knows where during that time.  She is excited.  It is something that her and my dad wanted to do together.  It’s not exactly how she imagined it, but she is looking forward to something new and a change.  She will meet new people and probably other widows and maybe even a few widowers.  We will miss her while she is gone, but are so happy for her.

Prayers

I was saddened today to hear the news that Dean Bullock passed away early this morning. I’ve posted about Dean here. He did amazing things after he was diagnosed with GBM. One of them being running the Ironman in Kona last October. I’ve never met him or his family but know how they are feeling today and wish them peace and comfort. Please keep them in your prayers today.

We Are Not Made for Endings

I was raised in the LDS church.  I grew up in Utah and Idaho.  In the “bubble” as I like to call it.  Since I have moved away from home and had my own family I have gone between being an active member of the church to an inactive member.  Even though I am not active right now I still strongly believe in the teachings of this church.  The belief of eternal life and more so of eternal families has gotten me through the past 14 months.

Twice a year the LDS church has a conference where there are many talks given to inspire and uplift its members.  I didn’t watch it, but did however find a reference to this talk on another blog from a talk given.  It felt like it was written just for me.  Which I imagine is how a lot people felt when they heard these words.

This is a small part of the talk.  You can read the whole talk here.

In light of what we know about our eternal destiny, is it any wonder that whenever we face the bitter endings of life, they seem unacceptable to us? There seems to be something inside of us that resists endings.

Why is this? Because we are made of the stuff of eternity. We are eternal beings, children of the Almighty God, whose name is Endless and who promises eternal blessings without number. Endings are not our destiny.

The more we learn about the gospel of Jesus Christ, the more we realize that endings here in mortality are not endings at all. They are merely interruptions—temporary pauses that one day will seem small compared to the eternal joy awaiting the faithful.

How grateful I am to my Heavenly Father that in His plan there are no true endings, only everlasting beginnings.

By President Dieter F. Uchtdorf
Second Counselor in the First Presidency
Church of Jesus Christ of Latter-Day Saints

Comfort. These words give me comfort and peace.  Something I haven’t felt much of the past 14 months.

Faith

Wise words.  Easy to say.  Hard to do.

“The difficulties which come to us present us with the real test of our ability to endure. A fundamental question remains to be answered by each of us: Shall I falter, or shall I finish? Some do falter as they find themselves unable to rise above their challenges. To finish involves enduring to the very end of life itself.”
President Thomas S. Monson