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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.

The Blame Game

Ed gets attention from older sister, Janie.

When someone we love dies of a horrible, seemingly senseless illness, accident, occurrence...we tend to want to blame someone.

Perhaps, we can blame someone whom we feel caused our loved ones death by being negligent, careless, reckless, or uncaring. Or maybe the environment played a part in causing his/her death. He worked with chemicals or dangerous tools. 

And we can also speculate that the doctors who looked after our loved one were not competent, didn't care about him/her, didn't give the right treatment or medications to help or cure our loved one.

Sometimes, we blame ourselves. We didn't see the signs of illness soon enough, we didn't listen when they said they didn't feel well, we didn't visit enough, care enough, give enough, or do enough.

Often, we blame the beloved him/herself. We think, if only he didn't smoke, drink, do drugs or make poor choices in his life. Or if only she had lost weight, exercised, or did the things her doctor told her to do.

I admit I had all these thoughts during Ed's illness and after his death.

I blamed his boss for not providing safety equipment such as ventilation for the wood shop where he worked for many years, and for exposing him to the chemically treated wood used to build cabinets. I would sometimes forget that his boss was one of his best friends and provided Ed with a steady job for the past 25 years or more, and even paid him his full paycheck the weeks there wasn't enough work to do to make a full 40 hours.

I blamed his doctors and the drug companies because maybe they could have provided better care and made a more potent drug that should have killed his cancer. Maybe they were prejudiced against him because of his age or because he was uninsured. Then, I would have to remember, his care and medications were almost all donated or provided for by some type of agency or from someone's generosity, including his oncologist.

I would get angry at myself for not doing enough to help. But then I would remember, I can only do as much as I can without endangering my own health and sanity.

I admit, I wondered sometimes what if Ed had stopped smoking years earlier? Would it have prevented his brain cancer? Made it less devastating? But upon research, I learn, that this type of cancer doesn't appear to be directly related to cigarette smoking or any other thing he could have drank, eaten or smoked.

And lastly,  people will blame God. They will scream, yell, cry and even curse God! They will be angry at Him, because they know He could heal their loved one from their illness...if only He would. They become so angry because God didn't listen to their prayers, or the prayers of others, and cure the one they love. 

I can honestly say I never 'blamed' God for Ed's illness or death. I don't pretend to understand why God let it happen to him, and I have even been angry with God for letting him suffer. Luckily, God is big enough (*smile*) to handle my temper tantrums and easily forgives me for my outbursts.  I never cursed God or threatened him. I did try bargaining with him..."God, if you will make that brain tumor go away, I'll dedicate my every breath to you....", well, you can imagine the look on God's face when he heard that one! 

But, finally I was at peace with God's decision to have this happen to Ed, and to us, for He has a reason for it. Whether or not we understand it or like it. God is always in control, even when we think our life is nothing but chaos.

One thing you do find out when you go through something like this, is who your true friends are. I am talking about friends, friends who are also family, co-workers, neighbors, and people you go to church with. You learn that sometimes, no matter what you are going through, some of your 'friends' think what you are going through is nothing compared to what they are going through. 

Then, you have those friends who just really step up and rise up and lift up. Those are the friends...be it friends, family, co-workers, neighbors, and maybe a fellow church member or two, who really reach inside themselves and give to you what you need when you feel like no one understands or cares...they are the ones who came and visited, the ones who sat and held his hand, or yours. The ones who brought a meal, or gave a hug. The ones who came to the memorial service even though they had NEVER even met your dad, or the ones who sent a card or a note. They are the ones who pitched in a few bucks to be tucked in a card, who brought a plant or said a silent prayer. Your friends are the ones who did these things, but didn't expect anything in return. These are the ones who didn't tuck their tails and run when things got ugly and uncomfortable.

Thank you to everyone who did any small thing that brought me or my family comfort. I hope to return the favor someday, but hopefully not because someone you love very much is suffering or passed away.

To all those 'friends' who turned away during my greatest time of need, it's okay. I don't blame you. Well, maybe a little bit.

Ed's Family - 2011

Mama and Greyson

Ed is gone, but his family lives on. The year is 2011...

January 22, Mama, Ed's wife, turned 73 years old.

On March 23, 2011, Ed's granddaughter, Amber, gave birth to Greyson. His first great-grandchild.

March 28th of 2011, Ed would have been 65 years old.

On April 3, Ed had been gone from us one year.

On October 22, Ed's granddaughter, Nicole, gave birth to Jacob. Now he has two great-grandchildren!

In November, we had our second Thanksgiving without Ed.

In December, we had our second Christmas without Ed.

It is sad to go on without our husband, dad, grandpa, friend. But he would want us to go on, and be happy. We can sit and cry, and wring our hands, or we can rejoice in the time we got to have with him and celebrate his life. I admit, I do think of him and cry sometimes, but I also give thanks for all my wonderful memories of him. And when I think of something funny he said or did, I smile.

Nicole and Jacob