After – 6 years

Grief is a fickle son of bitch. You’re ok for months and then one day you lose it for a good 6 hours.

Don’t let anyone tell you when it’s time to be done grieving.  There is no timeline. There is not a wrong or right way to do it.  It’s ok to still be sad 5/10/20/100 years later.

How lucky am I to have had someone so wonderful that made saying goodbye so hard…..

Edit – Adding this to this post.

THIS is an amazing blog post on grief written by John Pavlovitz . Everyone Around You is Grieving. Go Easy.

If you have a minute read it. It sure made me feel better.

This part rang true to me. Especially right now.

“Everyone is grieving and worried and fearful, and yet none of them wear the signs, none of them have labels, and none of them come with written warnings reading, I’M STRUGGLING. GO EASY.

And since they don’t, it’s up to you and me to look more closely and more deeply at everyone around us: at work or at the gas station or in the produce section, and to never assume they aren’t all just hanging by a thread. Because most people are hanging by a thread—and our simple kindness can be that thread.

We need to remind ourselves  just how hard the hidden stories around us might be, and to approach each person as a delicate, breakable, invaluable treasure—and to handle them with care. 

As you make your way through the world today, people won’t be wearing signs to announce their mourning or to alert you to the attrition or to broadcast how terrified they are—but if you look with the right eyes, you’ll see the signs.

There are grieving people all around you.

Go easy.”

After – 4 years, 4 months, 3 days

Another Memorial Day done.  This will be our 5^th one without my dad.  I can’t say enough how time goes by so fast, but yet so slow.

The cemetery was beautiful.  Now that my mom has moved I will probably only visit it on Memorial Day.  We also went to another cemetery where my great grandparents are buried.  It had an amazing flag display that was very humbling.  I explained to Rachel what the flags stood for and that each one was for someone who had died in a war.  Most about the age of her brother. 19.

I want to share a moment I had at my dad’s grave. I have written about how robins to me are a sign of my dad.  I see them in my yard a lot and on our fences and feel like it’s my dad saying “Hi. I see you. I’m with you.  I’m ok.”  My husband just smiles when I say that, I’m pretty sure he thinks I wacko, but you can’t dismiss this.  We were standing by my dad’s headstone talking with my uncle (my dad’s brother) and his wife and a robin just flies up and lands on his head.  It just sat there for a couple of minutes.  Not scared.  Just looking around.  Then he flew away.  I was like “Did that really just happen!?”  It gave me goosebumps.

They are still with us.  Sometimes we just forget and just need a robin to land on our head to remember.

After – 3 Years, 8 Months, 29 Days

It’s been a long time since I posted.  There isn’t a lot to report these days.  Which is a good thing.  My mom sold her house and bought a new one in a different state.  I have to admit I was not sad walking out of that house for the last time.  There were no happy memories there.  My dad got cancer 5 months after they moved in and then died there 10 months later.  Her new home is beautiful and just what she wanted.  She will be done with her LDS mission in February and will move right into the new home.

While cleaning out her house I came across many of my dad’s things.  It brought back lots of happy memories.  My mom downsized a lot so we acquired a lot.  My husband still asks why I brought random things home like an ugly 1970’s plastic cup or a container that held bulk laundry detergent. Because they remind me of my dad.  I smile every time I drink out of that stupid glass.

(This picture was taken over Labor Day weekend.  My mom just turned 70 and she rocks!  I want to be as cool as she is when I am her age.)

This will be our 4th holiday season without my father.  It does get easier, but I still find myself wanting to call and tell him something and then remembering I can’t.  I don’t imagine that ever goes away.

I think about closing down my blog but my numbers are still so high and I am still getting emails, so I hope it is helping others.  That is the main reason I started writing it.  I have seen a surge in my numbers, especially this last 6 weeks, which doesn’t necessarily make me happy.  That to me means someone new has just gotten the diagnosis and is searching desperately for any answers. It makes my heart hurt.  To you I wish you comfort and peace.  I am sorry you ever had to google the word Glioblastoma.

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.

After – 2 Years, 10 months, 4 Days

I haven’t posted for awhile.  I still monitor the site and answer all my email and comments.  I guess after awhile there isn’t a lot to say that hasn’t already been said.  I still get sad, I still miss him every day.  I can’t believe that is has almost been 3 years since he died and almost 4 since he was diagnosed.  Like I always say, it goes by fast, but yet so slow.

My mom is doing well.  She is still serving a mission for her church.  She will be done in July.  She has been talking about selling her house and buying something smaller.  She really has no attachment to her house.  They moved into it only 5 months before my dad got sick. So it really only has memories of him being sick there.  I won’t be sad to not have to visit that house anymore for sure.

My daughter is getting baptized in a few months and I asked her who she wanted to perform her baptism.  Immediately she said Grandpa (yeah me too).  Then we were talking a different day about who we would invite to her baptism and we said Grandpa and Grandma (meaning my husband’s parents) and she got all excited for a minute “Grandpa is going to be there? Oh yeah, he can’t.”  That split second of excitement in her was sad. It’s hard to understand the completeness of death as a young child.  We always reassure her she will see him again.

We put up our tree this weekend.  The first ornament now is my dad’s BYU ornament.  I got a little teary when I put it up.  Christmas isn’t the same without dad.

After – 2 Years, 3 Months, 3 Weeks – Memorial Day

I can’t believe this was our 3rd Memorial Day without my dad.  Memorial Day in our family has always been a big event.  A lot of cemetery visiting, picnics and pictures.  Yes, my family is one of those that take group pictures around headstones and all over the cemetery. In my teenage years (when I knew every thing) I thought it was pretty creepy and tried to stay out of those pictures. Now I understand.  It’s about family.  It’s about kids running around in the grass.  It’s about my daughter sitting on my dad’s headstone and telling me how much she loves grandpa.  It’s about hugs from cousins and aunts and uncles you haven’t seen all year.

I hate the fact that that headstone even has to exist.  But I do appreciate the bond that was created with my mom and my siblings because of my dad’s cancer.

My mom is doing well. She is still serving a mission for the LDS church. She has extended her time and will stay out an extra year.  She is always busy and doing fun things with the other sister missionaries.  She is able to come up and visit us which is nice.  I am glad she wasn’t called to serve farther away.

Thank you to everyone that emails me and sends me positive comments.  I apologize if I haven’t gotten back to you yet.  I will.  Things have been hectic this past month or two.  I pray for each of you and hope that you have peace and comfort.

Time

After – 2 Years

I love you dad.

I think about you a million times a day.

2 years seems like a short time, but has seemed like an eternity without you.

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.