Safely Home

Dear Ed,

Son, Husband, Father, Brother, Uncle, Grandfather, Great-Grandfather, Friend

How we do miss you!  You have been gone from us four years now. Not a day goes by that we don't speak of you, remember you, think of you. You left behind much to remind us of you. The things you said. The things you did. The things you made. 

You were a man of few words, but your actions made a deeper impact on us than any amount of words could have.

Ed and Amber

You were kind, soft spoken and gentle. Did you ever utter an unkind word about anyone? If you did, we did not hear them.

Today, when we speak of you, we are finally able to let some of the memories of your suffering slip away. We are more able to remember you the way you were, before your illness. We see you smiling your big, toothy grin! We hear you laugh and see the twinkle in your eyes.

Me and Ed, with his prayer quilt.

And it brings us much comfort knowing you are with our Lord, waiting for us, surely saving us a seat near you. Because that is what you would do. You would see us coming, and pat the seat beside you, to draw us near to you. 

 

Mama, Ed and Bo (December 2007)

Safely Home

I am home in Heaven, dear ones; 

Oh, so happy and so bright!

There is perfect joy and beauty

In this everlasting light.

All the pain and grief is over,

Every restless tossing passed;

I am now at peace forever,

Safely home in Heaven at last.

Me, Mama, Ed, Bo, Bobby December 2007

Did you wonder I so calmly

Trod the valley of the shade?

Oh! but Jesus' love illumed

Every dark and fearful glade.

And He came Himself to meet me

In that way so hard to tread;

And with Jesus' arm to lean on,

Could I have one doubt or dread?

Bobby, Mama, Ed, Bo, Me (December 2008)

Then you must not grieve so sorely,

For I love you dearly still:

Try to look beyond earth's shadows,

Pray to trust our Father's Will.

There is work still waiting for you,

So you must not idly stand; 

Do it now, while life remaineth-

You shall rest in Jesus' land.

Jess, Mama, Me, Ed and Amber (November 2009)

When that work is all completed,

He will gently call you Home:

Oh, the rapture of that meeting,

Oh, the joy to see you come!

Author Unknown

(Catholic Prayer Card given to me by my Aunt Judy Glass, 

who is not Catholic, but works at a Catholic School)

Bo and Ed. Summer 2009. Bo shaved his head to match Ed's!

Happy Birthday Ed!

March 28, 2014 would have been Ed's 68th birthday. 

We used to celebrate with a cake and ice cream, maybe a meal, and some gifts. 

Ed was always teasing me that I was trying to 'catch up' with him when I had my birthday a couple of weeks before his, and I'd tease back that he would have a birthday to stay just ahead of me.

Most of the time, we would celebrate his birthday and Jessica's birthday together, as they were only one day a part. He would tease her and call her his 'girlfriend'. 

I am thankful to God that Ed got to celebrate 64 birthdays. Now, he celebrates in Heaven. I cannot even imagine how wonderful that must be!

Almost 4 years...

Mama and Ed. Early 80's I believe.

It has been almost four years since Ed, my step dad died from a cancerous brain tumor. 

Four years ago, I didn't think I would ever get over this. I was right.

But time does bring some healing with it.

This past year has been very hard for me, but when I compare it to what he went through, my 'bad year' was a piece of cake.

When I think of Ed, I think of all the good things he did, what a good person he was, how no one has an unkind word to say about him. And I am happy.

I am happy to have had him for my step dad. I am happy he got to live a pretty long life, though each year I find myself saying, he died so young. I am happy he was 'saved'. I am happy to have reminders in my home of him. I am happy to see the cardinals which make me feel like he is sending good messages. I am happy for my certainty of where he is now.

It has been almost four years since Ed left us. He left us, and yet, he is still here.

Photo Card

Initially Snowflake Christmas

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On the Brighter Side...

My brother found some pictures on his camera that he hadn't looked at or downloaded before. We had fun looking at the pics! I hope he doesn't mind me sharing some of these!

That's me! I got caught in the kitchen. Christmas 2008.

Ed and Bo - Close up!

Ed and my Uncle Larry. My mama's brother.

Ed and my Momma.

Siblings...Judy, Mert, Kathleen (mama) and Larry.

Terry and Bo - another close up! LOL!

The night before Amber and Chris' wedding - I missed out on this fun!

My family at Amber and Chris' wedding.

The photographer said tell your daughter a secret...hmmmmm. Must have been funny!

And finally...my brother's cat, Jack. He got his tail caught in the door and he had to have it amputated by a few inches. He had to wear a cone so he wouldn't amputate it further!

50/50

Ed, getting radiation early on in his disease.

I got a free movie rental code from Redbox today.

While in Walmart I decided to see if there was anything good to rent. I didn't really see anything, but then I saw this movie called 50/50. I got it. I mean, even if it's not good, it's free. So what's the big deal.

I had seen previews for this movie months ago. A guy finds out he has cancer. His dopey friend thinks he can use sympathy to pick up girls for them. Joseph Gordon-Levitt is the main character (you know him - he's the kid on 3rd Rock from the Sun) and his side-kick is Seth Rogen. Ok, with that guy you know it's going to be a dopey movie!

Oh God. I didn't know.

I thought it was a comedy. And it is, partly. I mean, it does have some humorous parts to it.

But mostly, it's kind of real.

The shock of hearing those words. Tumor. Cancer. Chemotherapy.

The disbeleif.

The people in your life who say you can count on them. But you can't.

Shaving the head.

The loneliness of chemo for some...hose who don't have someone to be with them during the process.

People who believe it's about them. Not about the person with cancer.

Needles. MRI's. Surgeries.

Ups. Downs.

This movie has brought back a lot of things I try not to think about. Ed has only been gone two and half years. I know as I get older and more time goes by, certain details will get lost in the tangle of my brain. Some things I want to forget, some I don't, some I need to, some I can't. I hate crying over Ed, because I know he wouldn't want me to.

Lucky for me, this mostly, 'cute' movie, was not too depressing. It just made me remember. And lucky for me, this movie had an ending that didn't send me over the emotional edge.

I wish all cancer stories could have an ending like that.

Would I recommend this movie? Yes. Like I said, it's mostly cute. And if you've never seen anyone go through cancer, it probably won't effect you in a sad way. If you have seen someone go through it, it might help you release some pent up feelings. Maybe even a tear. And it will make you laugh a little too. I'll give it a thumbs up!

Quantity vs. Quality

I read an article in the April/May 2012 edition of the magazine Neurology Now titled Antiepileptic Drugs for Treating Brain Tumors? by Andrea King Collier (pg. 13-15).

According to the article, a study done in Switzerland determined that Glioblastoma patients who took valproic acid (a common anti-epileptic drug) while taking chemo treatments fared better than patients who took other types of epileptic drugs or who did not take any type of epileptic drug at all.

I found this article very interesting because Ed, my step dad, took the drug Lyrica and Dilantin to control his seizures caused by his glioblastoma (brain tumor). To the best of my knowledge, Lyrica nor Dilantin do not contain valproic acid. I wonder, if he had taken valporic acid to help control his seizures, would he have lived a few months longer?

This article states that the average survival rate for glioblastoma patients is 15 months.  Ed found out he had the brain tumor in November, 2008. He lived till April, 2010. So he lived about 16 months after diagnosis. Did his anti-seizure medications help him live longer? 

I don't know the answer to any of my questions. But I know that even though he lived a bit longer than expected, his last month of life was not a high quality of living. His last month consisted of him being totally bed-ridden, totally depending on others for his toileting, eating, bathing, everything. I think he had his mind till the end, but he was trapped in a body that didn't respond to his needs or his wants. He couldn't sit up. He couldn't feed himself. He had to have a catheter and wear depends, and someone else had to change him, bathe and dress him.

If you or your loved one has Glioblastoma, I promise you, you will do whatever you can to make your symptoms or your loved one's symptoms less painful, and more endurable. Ed had seizures, so of course he was prescribed anti-seizure medications. Had we known this other drug was available and might extend his life, we more than likely would have asked for it. It may have helped him live a few more weeks or months longer. But I am not sure that would have been as ideal as it sounds.

'"If you are talking about a better quality of life for the time you have versus using a therapy that may prolong life for a month but decrease the quality of life, most patients choose quality of life, " Dr. Taylor says.' , states the article in Neurology Now. I must say, if I could live a month longer with increased mobility, clarity of mind, ability to communicate, etc., I believe it would be well worth taking the drug. Or even if my quality of life stayed the same with the drug while causing me to live longer, I would be happy with that. But if living a few weeks longer as a person in pain or frustration, it may not be worth it.

It's hard to know what I, or anyone, would choose in that situation. But at least the drug is out there, and the option is there if one chooses to take it. Perhaps with more research and testing, doctors will know more about the effects of valporic acid on the survival of Glioblastoma patients and will be able to offer that drug as another way to extend life, and hopefully improve quality of life.