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

Five Things I Wish I Could Tell Ed Today

If I could see Ed again for a few minutes, these are the five things I would tell him.

1.  Everyone is okay. Yes, we miss you like hell. But we have learned to deal with the sadness better and we    are actually doing okay!

2.  You're a Great Grandfather! You have a great grandson and he is wonderful. He would have loved to sit in your lap and you would love to hold him!

3.  We all love you. We never told you enough while you were here.

4.  We know you are in Heaven. I have no doubt in mind where you are and that you are in eternal peace and happiness!

5.  We will see you again. As sad as it was to watch you go, we know you are safe and that you are waiting for us.

Where to go?

A friend forwarded this poem to me. It reminds me of all the pills Ed had to take. They were all different colors, sizes, and shapes. They each had a job to do, and up until just a few weeks before he died, Ed knew which pills to take, how many, and at what time. I am not sure he, or I for that matter, knew exactly what each pill did.

Every weekend, when I went to visit Mama and Ed, I put together the pill box for the upcoming week. It could be quiet confusing trying to figure out which pills were taken in the morning, which ones at noon, which ones at dinner time, and then sometimes there was one or two to take at bedtime. There were also multiples of certain pills...maybe two in the morning, three in the evening. Whew!

I finally decided instead of going by a list, I would take a picture. The picture was attached to the side of the fridge with a magnet, and the list came down each weekend to lay on the table to use as a guide to fill the pill box. As long as he was able, he sat at the table with me and 'helped'. 

At one point, Mama felt like Ed didn't always know what he was talking about. His speech was increasingly hard to understand and he sometimes switched words about without meaning to. This one particular evening, Ed somehow made Mama understand that he missed a pill. She told him no, that all the pills were in the box for that day, and that he had taken each one. No, he shook his head. He held up one finger. One missing. No, Mama said. Up goes the finger. One missing, he insisted. Mama was aggravated with him and I suppose they went to bed a little perturbed with one another. Ed was convinced he had missed a pill. Mama was convinced he had not. She even had me on the phone with him telling him I was sure I made up the pill box correctly.

The next morning, after breakfast, Mama was sweeping the kitchen floor and under the kitchen table was a pill.  Ed had a look of satisfaction on his face.

SPECIAL POEM FOR OLDER FOLKS

A row of bottles on my shelf

Caused me to analyze myself.

One yellow pill I have to pop

Goes to my heart so it won't stop.

A little white one that I take

Goes to my hands so they won't shake.

The blue ones that I use a lot

Tell me I'm happy when I'm not.

The purple pill goes to my brain

And tells me that I have no pain.

The capsules tell me not to wheeze

Or cough or choke or even sneeze..

The red ones, smallest of them all

Go to my blood so I won't fall.

The orange ones, very big and bright

Prevent my leg cramps in the night.

Such an array of brilliant pills

Helping to cure all kinds of ills.

But what I'd really like to know........ ....

Is what tells each one where to go!

Thinking about Krista and her Numbers

When Ed was diagnosed with a GBM (glioblastoma multiforme), I immediately began doing research on the internet. I was happy to find information regarding the disease, but not so happy to see the treatment options, the side effects of treatment, the statistics for survival.

While doing this research, I came across several blogs created by other persons with GBM. The one which I most connected with was the one by a woman named Krista.

The things that drew me to Krista and her story was the fact she was a woman, mother, Christian, and at the point I 'met' her, she had been declared 'cured' for over three years. In Krista's blog, she marked milestones by the months. Sometimes her blog title was a number...and that number might stand for how many months she was cancer free or how many times she had been to the doctor that week.

It was fun getting to have an inside look at Krista's family life and her medical life. She shared the good, the bad, the ugly and the pretty. She drew the perfect picture of how a person with a horrific disease can overcome, continue with life, and be filled with hope. 

What fascinated me most about Krista and her blog, was the fact that she had connected with a doctor that tried everything, stuff Ed's doctor doesn't seem to know or try.

Checking in with Krista, via her blog, became a weekly activity that I looked forward. Seeing that number show up as a title...and knowing it was more months that she was celebrating cancer free.

Until recently.

Krista's brain tumor didn't come back. Not exactly. But what it did do, was relocate to her spine. Earlier this year, after a most brave and heroic battle, Krista died. 

As sad as that is, I can tell you this, Krista was an angel on earth. To her children, her husband, and her followers. Her story is one that she wanted to share.

If you have time, and want to see true inspiration and bravery, please go to this site and read some of Krista's blog. ( http://onkristasmind.blogspot.com/ ) .  Her husband still posts little updates about himself and the children. I am sure they are having a tough time adjusting to her being gone, but doing this small thing probably helps him.

Ed is a Great-Grandpa!

Greyson...having sweet dreams!

Ed is a great-grandpa!

His granddaughter, Amber, gave birth to Greyson on Wednesday, March 23, 2011. Only a few days more and he would have been born on Ed's birthday...but he was ready to come out!

Ed was a great dad and grandfather, and he would have made a super great-grandpa too.

It's sad he isn't here to share the joy with us, but I know he knows all about Greyson and he is rejoicing in heaven!