Timeline

This is the timetable of m dad’s fight with GBM.

Weeks

02/18/12

Family dinner.  Dad was fine.

03/02/12

Symptoms started to present themselves.

03/20/12

I called to talk to him.  He was very confused.

0

03/26/12

Diagnosed with Stage 4 Glioblastoma Multiforme. Midline of brain had shifted 7.5mm

0

03/27/12

Surgery to remove 7cm tumor on left frontal lobe.

1

04/01/12

Released from hospital.

8

05/24/12

Finished chemo/radiation started on maintenance Temodar. 28 days off 5 days on.

Ongoing

Needed a nap in the afternoon. Tired easily.

18

08/04/12

Celebration for 45th wedding anniversary.  Dad doing great.

20

08/14/12

MRI Results satellite tumor had shrunk, no new tumors.

29

10/20/12

My wedding.  Dad seemed confused and having a hard time bouncing back from last dose of Temodar.

32

11/07/12

MRI Results show new growth.

33

11/14/12

Met with doctor.  New growth operable.

35

11/30/12

Surgery removed 3.5 inch tumor on frontal left lobe right next to where original tumor was.

35

12/01/12

Up walking in hospital.

36

12/02/12

Blood clots found in lungs.  Inserted “basket filter” to break up clots.

36

12/03/12

Released from hospital with oxygen.

36

12/07/12

Called Dad.  He didn’t know who I was.

Ongoing

Struggling with short term memory and names.

38

12/19/12

Post op MRI.

38

12/20/12

Doctors reported 3 new tumors showing in MRI.  (They grew in 19 days!)

39

12/27/12

Doctors told mom that Avastin would give dad a 30% chance of living another 3-4 months.  Without it 1 month. (She told us kids 2)

40

01/03/13

Mom decided to stop all treatment.

41

01/08/13

Met with Hospice for the first time.

Ongoing

Forgetting words, not being able to make coherent sentences. Napping a lot.

42

01/17/13

Fell, cut his face. Had to have stitches.  The last time my kids saw my dad.

43

01/23/13

Fell while getting out of bed.  No injury.

43

01/26/13

Fell twice in one day.  Mom had to have the neighbor help get him up the second time.

44

01/27/13

My sister and I drove down to help mom.  Got him a walker.  He could walk slowly with someone behind him in case he fell backwards.

44

01/28/13

Got a wheelchair from Hospice.  Much easier to use.  Still sitting at the dinner table and eating.

44

01/30/13

Got a hospital bed from Hospice.  Too hard for us to move him as he couldn’t walk anymore.  Stopped eating/drinking.  Having trouble with vision.  Went into a coma that night.

45

02/04/13

Passed away peacefully at 9:30pm.

1 Year

Today is the one year date from my dad’s diagnosis with stage IV Glioblastoma Multiforme.

He lived 302 days after diagnosis.

10 months, 1 week and 2 days.

I wrote a post here wondering if I’d rather have someone die suddenly or know that their time was short.  I think I’ve decided that I would want to know.

I hate this cancer.  I hate all cancer, but this one is a mean relentless beast.  I am trying to take the positives out of all this.  One of the biggest positives we got was we knew our time was limited.  I talked to my dad almost every day on the phone.  I told my dad I loved him more than 302 times in those 10 months.  It was the last thing I said to him before he died.   I have the peace of mind that he KNEW I loved him and I knew he loved me. No second guessing that fact.

My family is pretty close.  I usually would see my parents at least once a month.  Knowing my dad was going to die sooner made those last visits more meaningful and special. I am glad I had that.  I am glad I have those memories now.

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2012-04-28 13.29.09

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Into The Echo

Bon Jovi has been my favorite band since 1985.  Their posters have covered my walls since I was 15 years old.  Their music has been the soundtrack to my life over the past 28 years. They just released a new album last week and there is one song on it that is the song of my heart right now.  I cried when I first heard it. (Not something too hard to make me do right now.)  You can hear it here.

I talk to my dad.  I’m pretty sure he can hear me.  I feel his comfort sometimes when I am really struggling.  So I am always sending my love into the echo, hoping to hear him and feel him somehow.

Into the Echo

When it hurts just to talk
And it’s too dark to see
When my heart’s just a hole
Full of want, full of need

Stuck at a stop light
Hands gripping the wheel
Tears fill your eyes
And you bleed just to feel
Someone beside you
Someone to cry to

Into the Echo
We shout our dreams
Into the echo
We throw our hearts
Into the echo
We send our love
Into the echo
To the echo
Into the echo
To hear it back

Are you who you are?
What’s under that mask?
Do you burn for the future
or yearn for the past?

Did somebody sell you
some broke fairytale?
Now you wait by the water
For a ship that I sail

 
When it hurts just to talk
And it’s too dark to see
You can touch, you can feel
Yeah, you just gotta reach

 
Into the Echo
We shout our dreams
Into the echo
We throw our hearts
Into the echo
We send our love
Into the echo
To the echo
Into the echo
Just to hear it back

I am so excited to see Bon Jovi next month. Besides my wedding it will be the brightest spot in the past year.

Answers

I get a lot of questions from people about how things were that last week with dad and how my family is doing now.  I have been putting off writing about it.  I am struggling right now and I don’t know if writing about it will make it better or worse.  But I am going to give it a shot.

How is my mom doing?   She is doing well as far as I can tell.  I don’t live close enough to see her every day, but I do call her every day.  She has her moments. She said that a week or so after he died she was making the bed and she was kinda joking to herself and said “This is why you left Allan, you didn’t want to help make the bed anymore.”  She said immediately in her mind she heard his voice say “I would be there right now helping you if I could.”  The nights are the hardest for her.  I called her one night and she said she was making dinner and I asked her what she was making.  She said a frozen microwave meal.  That made me so sad.  She said it wasn’t worth cooking something huge for one person.  She is trying to keep herself busy with her church and projects.  We are going to go visit for Easter.

My mom is the type of person that will one day just decided she is done being sad. She says it is ok to mourn for a little while and then after that it is just feeling sorry for yourself.

I hope she tells me when that day is….I am so tired of being sad.

How am I doing?  Alright.  Hanging in there.  Tolerable. Shitty.  Cry scale 9-10 every day.  Lots of Xanax, Wellbutrin, and Ambien.  I finally made an appointment with a counselor.  I need someone to help me work through all of this.  I don’t think it is the actual fact that he is gone that is causing me so much grief right now, it is the 9 days leading up to his death that I have the hardest time with.  Watching him die is the hardest thing I have ever done.  I am so glad I was there.  I wouldn’t take that back.  I just don’t think I realized how hard it was going to be.

How did you handle those 9 days leading up to his death?  Honestly I don’t know.  I think I was on autopilot. My dad didn’t like any noise at that point.  So there was no TV, radio or much talking going on.  It was very quiet most of the time.  Before he went into the coma, and before he was in the hospital bed, 2 of us were always in the room in case he wanted to get up.  He so desperately wanted to be self sufficient still.

After he was in the coma one of us was always in the room with him.  Sitting by him, holding his hand, putting chapstick on his lips, wiping him with cool wash clothes. We slept by his bed at night.  He would still squeeze our hand until Saturday if we squeezed his.  But he never woke up again after Thursday.  We still talked to him.  Told him we loved him trillion times and told him it was ok to go. We would be alright.

We spent a lot of time on our laptops.  Playing Plants vs Zombies of all things.  Very mind numbing. We all look like crap in this picture.  This was day 9 I think.  So those are crazy delirious posed smiles.

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How did you get through planning the funeral/choose a funeral home? One thing about my dad’s cancer was we knew he was terminal. We had the time to plan that most people don’t. We had met with a funeral home earlier in January. If I can give anyone one piece of advice on this subject is you do have choices. If you have the time and it is an option to talk to more than one funeral home do it.

The first place we went to was nice. It is where our family has done funerals in the past. They were familiar. I’m not a pro at this and don’t have any experience to go off of but this one, but it felt like a business deal. They had a form with prices and “add ons”. They had a room of caskets like a car dealership.  They checked boxes and used a calculator. I asked them what would happen if dad died at night. They said they had some college boys that helped them at night. We took the information home thinking it was done.

Then we got the name another funeral home through a family friend. We decided to talk to them too. The difference between the 2 experiences was night and day. He came to my mom’s house. He asked us about our family, about dad. He didn’t have a form with prices and “add ons”.  He had a nice book with pictures of caskets.  He said they would do everything, even going to the length of buying dad’s new clothes to be buried in so mom didn’t have to worry about it.  I asked him what they would do if dad died at night and he said he would personally come no matter the time.  He made us feel like family. We decided to go with them. (They were also almost $3,000 cheaper).

I planned the whole funeral and wrote the obituary for my mom in the quiet of those last few days dad was alive. She just couldn’t do it. I had finished the video life sketch in early January that I wanted to use during the funeral. My mom agreed it would be perfect. It was hard to decide who was going to do what at the funeral so to make it easier we just went with immediate family and my dad’s best friend. The funeral home was is constant email contact with me sending me proofs of the program and answering questions. They even gave us a name of florist they used a lot and she came over to my mom’s and we got the flowers taken care of. We referred everyone to her that asked where they should order flowers from so they all could be delivered together.

This mortuary went above and beyond anything I have ever seen.  At the viewing the night before the funeral they had tables with bottles of water, mints and chocolates on them.  The day of the funeral they had them set up again, plus baskets of little Kleenex packages for anyone.  Who does that?  Maybe all funeral homes, I haven’t been to a funeral in a long time.  But those little things stand out in my mind and go a long way. They gave a little comfort in an absolutely emotionally horrible day.

Was I in the room when dad died?  Yes.  I am not going to write a lot about those moments.  They are special to me.  I will say that it was incredible.  Not scary like I was worried it was going to be.  My mom, sister and I were kneeling around his bed with him and it was calm and quiet.  He took his last breath and was gone.  There was an amazing amount of electricity in the air that I could feel. (My mom and sister experienced it differently).  I have no doubt he was there.  I have no doubt there is life after this one.  If it feels like that when I die I am not afraid.  It was the most comforting feeling I have ever felt.

What happened after he died?  I called the on call Hospice nurse since it was 9:30 at night.  I then texted our personal hospice nurse.  She had been over earlier and said she wanted to know when he died no matter the time.  She showed up within 20 minutes. The on call nurse was there in 30 minutes. We called my mom’s Bishop of her church and my dad’s close childhood friend.  They were there within 10 minutes. I called the mortuary  and he asked when I wanted him to come and I told them an hour. They were there in 60 minutes.

My mom couldn’t be in the room with my dad anymore so she sat in the living room with the bishop and the family friends while I was with dad and the hospice nurses.  I helped them take his shirt off so they gave him one last bath.  I was surprised at how pale he got so quickly.  I left the room at that point to give my dad privacy even though he wasn’t really there anymore.  They worked quietly and with great respect.  They changed him into clean clothes and covered him up to his shoulders.

While we waited for the mortuary to arrive we took all of dad’s medications and put them in a bottle full of kitty litter.  They had to document everything.  We had an HUGE amount of controlled substances.  (I kept commenting to my mom throughout the week before how much the street value would be for all the drugs. Morphine, Haldol, Oxycotton, all in liquid form.  That is how your brain thinks when you work for a police department I guess.)  After they emptied everything out into the bottle they filled it with water and shook it up.  They would take it back to their office to dispose of it.  I also didn’t want mom to wake up the next morning and have all of his other meds all over the house, so I went from room to room and gathered up 2 bags full of medication that just needed to be thrown away.  Hospice took all of it too.

What happened when the mortuary arrived? I have to comment here on how professional and loving these 2 men were.  They came in their suits, ties and dress coats.  It was almost 11pm.  It was a son and his father.  They treated us like we were their family.  They said we could have as much time as we wanted with dad.  They were in no hurry.  They hugged us and spoke in quiet tones.  When we were finally ready for them to take dad they gently wrapped him in the blanket that was on his bed (they washed it and gave it back to us later), wrapped a white sheet around him, except his head, and put him on a gurney.  My mom was still in the other room with my sister. They didn’t want to see any of this part of it all.  It was me and the hospice nurses.  They asked me if I was ready for them to cover him up.  I said I was.  They covered the rest of him with the sheet and then covered his whole body with a beautiful red velvet cover.  I walked them out and held the front door for them.  I watched them wheel him down to their car.  (They had a big Ford Expedition kind of car, not a hearse thank heavens). I watched them put him in the car and shut the doors. The son came back up and asked me if we needed anything else and I said no. He said it was unusual to have a family member watch them take the body out. I told him I had to. I had to make sure he was ok. He said that they would be with him that night. I went back in the house. The feeling of peace when my dad died was still with me.  Otherwise I think I would have been a crazy hysterical woman at that point.

What happened after everyone else left?  I have already written about my mom, sister and my “sleep over” that night in this post.  We were exhausted.  It was such a mixed bunch of feelings.  Sadness, relief, tiredness, emptiness.  We prayed with my mom for a long time that night before we went to sleep.  Dad was there with us.

How did you keep it together during the 2 days of the viewing and funeral?  Xanax and adrenalin.  It was a whirlwind.  So many people that I hadn’t seen for years.  I was so happy to see my friends and family and then would remember oh yeah, they are here because my dad died. Damn.

We had a viewing Sunday night before the funeral Monday .  It was at the church right behind my parent’s house.  You have to go down a big hill and turn a corner and the church is right there.  I held it together all weekend except for the minute we turned the corner to go to my mom’s and the hearse was parked in front of the church.  I lost my breath, it struck me so fast  and so hard  I wasn’t expecting it and it physically hurt. It was real right at that moment.  My dad was dead.  Even though I had seen him die.  Even though I was in the room when they covered him up and took him away.  It wasn’t real until I saw that hearse parked in front of that church.  That was the only time I really cried in those 2 days.

I’ve made up for in the last 5 weeks.

How are my kids and husband?  Better than I am.  My 5 year old talks about Grandpa being in heaven and who is with him and that he is happy.  She does comment that mom cries a lot.  My older son doesn’t live at home anymore so I think he is ok.  He doesn’t talk about it when we speak on the phone.  My 14 year old has had a harder time.  He broke down the other day about it all.  He was very close to my dad.  Tony and the boys were pal bearers.  My 14 year old wore my dad’s shoes those 2 days with his suit and older son wore my dad’s suit.  They all wore one of my dad’s ties.

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What has helped me the most the most the past 5 weeks?  Besides prescription drugs,  my friends.  So many kind emails, texts, phone calls and visits.

girls(2 of my best friends.  Donna on my left has been my best friend for over 25 years.  Kristi on the right has been one of my closest friends for 15 years.  Her husband Pete is who presented my mom with the flag at the cemetery.)

And comments from everyone here on my blog.  Thank you for your kind words and prayers.  You will really never know how much they help.

What Is

Facebook Post Today:

Sometimes grief can be so all consuming and keep you thinking of what was and you forget what is. I miss my dad so much it makes my heart hurt, but then I turn around and see my incredible husband and remember my world will be alright. What an amazing man that has patiently and quietly dealt with a very emotional wife that cries all the time and pulls herself into silence most of the time. All the while he is there holding my hand. Tony doesn’t ever get on Facebook, but I had to publicly thank him for all he does every day for our family and for me.

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