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.

A New Perspective

Perspective –

a. The relationship of aspects of a subject to each other and to a whole.

b. Subjective evaluation of relative significance; a point of view.

c. The ability to perceive things in their actual interrelations or comparative importance.

I have written this blog from the perspective of a daughter, care giver, and loved one of someone going through the difficult journey of brain cancer.  I have only been able to express my feelings from this side of the experience.  The fear, anger, loss, heartache and loneliness that come from watching your loved one die a rather horrific death that GBM brings with it.  It was horrible. I hated it. I still hate it.  But these past few weeks I’ve gotten a glimpse of perspective of how my dad may have felt those 10 months.

Truthfully it has freaked me out and made my heart hurt even more for my father and his experience.  It has also given me a greater admiration for him. (If possible)

I have struggled with endometriosis and other “women” problems for the last 25 years.  It has been something I have accepted and learned to live with.  I have had 3 major surgeries and 3 c-sections. The last c-section was a scary as hell. We were lucky to have a healthy baby that only had to be in the NICU for 24 hours. I only needed 2 blood transfusions and an extra 2 hours of surgery with no internal damage.

It now has come to the point to where I have to have a hysterectomy.  Neither one of my doctors (one of which was my doctor for 20 years and who is who did 2 of my surgeries and delivered 2 of my babies) refuse to do it.  Her words “I wouldn’t touch that surgery with 10 foot pole.”   (Nothing like that statement to make you have a little anxiety.)   So I met with a specialist, an oncologist gynecologist, last month and scheduled surgery for next week.  She seems confident that she can do it.  She said it will be a difficult surgery and scheduled 5 hours to do it and made sure I was her only big surgery that day.  This is what she does.  Intricate, difficult gynecological surgeries. Mostly cancer patients.  So I know I will be in good hands. But even knowing that I have still been battling major panic attacks since we met with her last month and have wanted to cancel the surgery a million times.

Now to my point of this whole post. (Finally) In the midst of one my crying panic attacks I started thinking about my dad.  I thought about how scared he must have been knowing that his situation didn’t have even that possibility of having a happy ending.  His anxiety wouldn’t go away after his surgery.  He had to live with the fact that in the near future this cancer was going to kill him.

So then I felt like a big whining baby.  No wonder he cried every time he had to leave us or hang up the phone and say goodbye to me.  But what makes me feel like a bigger whanny baby is that my dad never said one negative thing about it the whole time.  He always said “It is what it is.”  He never had a pity party, never said “why me?”  although I’m sure he thought that.  He never showed an outward bit of anxiety to us.  This makes him even more amazing to me. Because I’ve been a big huge complainer, whiner, crier, bitcher, why me-er,  for 5 weeks now.  My husband deserves a medal.

Tony and I had a huge talk on the way home from the pre-op appointment yesterday.  It was THAT talk no one wants to have. I don’t want a funeral, have a party, say nice things about me,  don’t marry a dirty pirate hooker, give my daughter a good mom, don’t love your next wife more than me. I cried the whole time, but if my dad’s cancer taught me one thing was be prepared.  It all gives me a stomach ache though.

Now when I start feeling that anxiety and fear creep up on me I take a deep breath and think of my dad.  He did this.  He faced 2 major brain surgeries with his head held up like a man.  If he can do it, I can too.