Ed's Journey

The Blame Game

2012-01-12T19:09:00.000-08:00

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

2012-01-02T11:13:00.000-08:00

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

2011-08-06T12:59:00.000-07:00

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?

2011-06-01T06:34:00.000-07:00

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

2011-04-22T12:55:00.000-07:00

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!

2011-04-13T07:20:00.000-07:00

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!

Forever Smiling

2011-03-10T08:41:00.000-08:00

Ed's Famous Smile

I am so happy to report, Ed's smile is forever. He is in heaven, walking around with Jesus, talking about the things men like to talk about.

Some people called Ed 'Smiley'. It fits.

There were a few times I can remember Ed not smiling. Such as, when Bo was five, he was diagnosed with Rocky Mountain Tick Fever, I came home from school and Ed was crying. That was the first time. I was so bewildered.

The second time I saw Ed cry, was when me and Chuck were seperated for a few weeks, and Ed met me at the kids daycare. I told him I didn't think I could go through with it (divorce), and Ed cried with me. I think that might have been the first time he hugged me. (Yes, I was 31 years old.)

The next time I saw Ed cry, someone had hurt his feelings terribly. I didn't actually see him cry, but I heard it on the phone.

I saw tears again when Dr. Wolpert told Ed, and us, his family, that he had a brain tumor that would he would probably die from. But his tears came after ours, so I know it saddened him to see us so sad.

The last time I saw Ed cry, was after he'd been through numourous chemo and radiation treatments, and was told his tumor had grown back and that treatment was over, and we broke the news to Mama.

From that time on, we did everything we could to just make Ed comfortable and help him live the rest of his life in peace.

For all the tears I saw Ed shed in my lifetime, I saw a hundred fold in smiles and laughter.

He suffered tremendously the last two and half years of his life, but he never complained and didn't cry or show sadness unless he saw it on our faces first.

I am very fortunate. When I remember Ed, I do not see tears in his eyes, I see a twinkle. I do not see his lips turned down at the corners, I see a smile. I do not hear sobs, I hear laughter. I see him whole, healthy and vigourous as he strolls down the streets of gold, walking with Jesus.

A New Year

2011-01-01T17:50:00.000-08:00

Today is New Year Day. We begin a new year and leave the old one behind. And though the calendar year changes, my family is still in our first year of 'firsts' since Ed passed back at Easter.

We had our first Christmas without Ed. Last Christmas, we practically had to beg Mama for her and Ed to go to my brother's for our family Christmas party, for we feared (and rightfully so), that it could be his last Christmas. Mama felt like he wasn't up to it, that we shouldn't take him out. But we convinced her to let us take him. The boys carried him up the stairs while he was still seated in his wheelchair, and it all worked out wonderfully. Perhaps we were being selfish...in wanting to have this 'Last Christmas' with him and making precious memories. I think it did tax him; that he was quite ready to go home and rest after the party, but I do feel that he enjoyed being with us all and laughing, eating, playing games and laughing some more.

This year, not only was Ed not present, neither was Mama. She didn't want to attend. She has her reasons. Reasons none of us will probably ever understand.

We had our Christmas party, and my brother Bo stated, 'Pops will be there', ( at the party ). And I feel like he was in spirit. We didn't sit and wring our hands, we didn't cry, honestly, we didn't talk much about Ed. I think we were afraid we would start crying and being sad, and we didn't want to be sad. Ed was there with us. As he will be with us every holiday from here on out.

He is with us as we begin our new year. He 'll be with us on our birthdays and each holiday. He was not a big partier or big story teller, but instead, he was the quiet calmness at all our little parties and the best listener.

He would want us to be happy, to go on with our lives, and to learn something from his life and his death. He would want us to celebrate, to love one another, and to listen to one another.

Happy New Year!

Christmas 2009 - Ed celebrating with his family!

Ed, What Were You Thankful For?

2010-11-26T18:38:00.000-08:00

Chuck, me and Ed, December 2009.

It is our first Thanksgiving without my step dad, Ed. In the past recent years, we had drifted away from celebrating Thanksgiving at Mama and Ed's house. We used to all get together the weekend before Thanksgiving (Mama, Ed, me and my family, my brother Bobby and his family, and my brother Bo and his girlfriend). I think the last time we all got together, it was actually at my brother Bo's house. But for whatever reason, we all started doing our own thing.

Each year, during this holiday, I reflect on the things I am most thankful for. My family, my friends, my home, car and job. Health and financial stability are always at the top of the list too.

Two years ago, Ed was diagnosed with a deadly brain tumor. It seemed at that time, there wasn't much to be thankful for in regards to that. But looking back, I see there truly was a lot to be thankful for; Paramedics, doctors, medicines and operations that extend life, the kindness of strangers and friends alike. I can reflect now, that I am so thankful for the time I got to spend with my step dad, that had he not been ill, I would probably would not have spent that time with him.

I know my family members are thankful too, that they got to spend time with Ed before his time on this earth was over. I know they must too be glad of the things and people that helped him get through the last year and a half of his life.

But now I wonder, what was Ed thankful for?

I am sure Ed was thankful for his family, that rallied around him, during what had to be the most frightening and painful event in all his life. I think he looked around and saw his wife, sons, and daughter, and extended family and saw that they were not going to desert him and leave him on his on to deal with this thing. He saw that we stepped up and made sure he got to the hospital, doctor visits, chemo and radiation treatments, and other destinations that he could no longer get to by himself. I am sure he was thankful.

I am sure he was thankful for the means by which he came about getting his operation, his treatments and his medications. They were astronomical in cost, especially for a carpenter who made a modest living, with no health insurance.

I am quite sure he was thankful for the kind spoken doctors, the soft touch of a nurse, and the gentleness of the technicians who had no choice but to stick him with needles, or bolt him to a table to receive radiation. I know he must have been thankful.

I know in the end, he must have felt completely robbed of dignity, when his son had to lift him onto the toilet, or into the bathtub, or his wife had to bath him in bed in the mornings because he sweat so bad during the night, or she or his daughter or other family member had to spoon feed him. But on the other hand, I am sure he was thankful it was his family, and not strangers, doing this for him.

I could feel his thankfulness, when, after doing something like changing dressings on the bedsores on his feet, he would pat me on the arm. It was like he was saying, "I'm sorry you have to do this for me. But I thank you". He took to patting most anyone who helped him do anything. Even the Hospice nurses and aids, who we finally had to call in, though he didn't want Hospice care.

I know Ed was a thankful man. Even though he could have hated the doctors, nurses, us, the world, even God, he showed his thankfulness in his pats and in his eyes.

Today, I thank God that I know where Ed is today on this Thanksgiving holiday. Without that knowledge, I couldn't have peace in my heart about him and what he went through. And I thank God to, to have known this man and have been able to help him the small amount that I could.

Here's hoping you have a heart full of thankfulness today also.

Ed and Mama. December 2009.

Side Effects (subtitle: Danged if You Do, Danged if You Don't)

2010-09-21T19:15:00.000-07:00

From the very beginning of Ed's journey with brain cancer, he experienced many, many side effects.

Ed had a glioblastoma multiforme tumor, a tumor that the doctor believes started growing approximately one year before his first symptom. The first side effects of this tumor was muscle weakness, a change in breathing, a slight personality change (seemed very quiet, looked like he was deep in thought or in 'another world'), and finally, seizures.

He had brain surgery to remove the mass from his brain, and the immediate side effects of the surgery were nausea and pain at the incision site, and brain swelling (edema) and weakness, loss of appetite. The long term effects of the surgery were continued brain swelling and pain at the site, and muscle weakness. He also developed a bad case of hiccups that were finally controlled by a drug used to calm your nervous system.

Ed was put on various medications to control his seizures and brain swelling. Side effects of the seizure medications were muscle weakness, sleepiness, dizziness. The side effects of steroids, used to control brain swelling, was increased appetite and weight gain, and muscle weakness.

Soon after his surgery, he began radiation. The side effects of radiation were a blistered scalp, hair loss and destruction of brain tissue that controlled the right side of his body (his tumor was on the left side of the brain, which controls the right side of the body) and destroyed speech . . . slowly but surely.

Along with radiation, Ed also began chemotherapy. The side effects of chemotherapy were weakness, loss of taste and smell, and brain 'fog'.

Because of his illness, treatments and medications, Ed became quite immobile. He was urged to exercise, but he didn't feel like doing a whole lot of walking. A side effect of his immobility was a DVT (deep vein thrombosis), a blood clot, in his right leg. He had to take injections and later medication by mouth to thin his blood. A side effect of the blood thinner was easy bruising.

His sense of taste was so badly effected that foods and drinks he loved in the past were things that nauseated him now. He used to have a peanut butter and jelly sandwich with a glass of milk before bedtime nearly every night, and he enjoyed that immensely. And now these things made him sick to speak of them.

As time went on and Ed was on various medications longer and longer and some medications being increased in dosage and/or strength, more side effects appeared...including constipation, mouth fungus and yeast infection, losing the ability to use his right side and later the inability to use anything but his eyes and mouth and maybe move his fingers. Also, from near the beginning of his treatments he developed a sensation of water trickling down his arms, that is the best way he could describe it. His feet turned nearly black from bad circulation. He dealt with constipation and stomach upset. He needed the medications and treatments to stay alive as long as he could (or as he believed, to beat his cancer), but the side effects were sometimes as bad as the illness I think.

Other side effects of his illness and the treatments were the changes in his life style they brought about. He was always a man in motion; working at his job, working at home around the house or on various projects, driving and being completely independent. But now he couldn't work, couldn't drive, eventually getting to a point that he couldn't dress, bathe or feed himself. He always took care of his wife, my mother, but now the roles were reversed.

Other side effects were that because he received chemo treatments he was poked with needles every week. He took intravenous chemo treatments every other week, so the week before chemo he had to get blood work done to measure the amounts of toxins in his bloodstream, and different levels of white blood cells, iron, etc. to see if his body was tolerating his treatments well, and to keep an eye on the blood thinner he was on. Therefore his veins began to deteriorate from all the sticks.

One good side effect, I do believe got more in touch with his spiritual side because of his prognosis. He began to discuss his beliefs with ministers and began reading healing passages from the Bible.

Ed tried everything he was physically, mentally, and emotionally able to do to try and get well. He took chemo treatments well after his body showed signs of distress. He read the Bible and prayed. He would do some exercise in bed, squeezing a rubber ball and lifting small weights. He ate asparagus...took it by the tablespoons full like medicine, because he heard it might prevent the growth of cancer. He stopped eating sugary foods, as he had heard that might 'feed' cancer.

Near the end of his life, Ed had more side effects to deal with. Because he was now completely bedridden, he had to have a catheter inserted in able to urinate. Because fluid easily built up in his lungs, he took more medications to loosen up the mucus and clear the airways. Sometimes eating would now cause him to vomit and or have terrible coughing spells.

The last few days of his life, Hospice started administering morphine drops to control his pain and help with his breathing. The side effects, despite Hospice personnel telling us otherwise, he began sleeping more than being awake. Because food now went into his lungs if we fed him, he no longer took water or food. I am not sure what side effect this was from, but he began having deep hiccuping, which happened periodically the last days of his life. He would wake up now and then, and we would hold his hand, talk to him, and soothe him the best we could. A side effect from being taken off his seizure medications were something like electricity that coursed through his arms and legs and head. At least that is what I think it was.

The final side effect of all this; Ed stopped breathing in the early morning, the day before Easter.

As a terminal cancer patient, are you danged if you don't , and danged if you do? If you don't take treatment and medication, do you risk living a shorter life? If you choose treatment and medication, you must also choose to deal with the side effects. For some, like Ed, the choice is easy. You choose to do whatever you think might heal you, or at least keep you with your loved ones as long as you can.

I Recognize That Scar

2010-09-05T19:03:00.000-07:00

This Photo Was Taken About Three, Maybe Four Weeks After Ed's Brain Surgery. As You Can See, He Appears 'Normal", Happy and Healthy. No Obvious Signs of Brain Trauma. Even his Surgical Site is Hard To See Unless You Look For It.

While at work this past week, I met a young man with a horseshoe shaped scar on the side of his shaved head. I recognized that scar.

I do not know if all GBM patients end up with a half circle scar, but all the temporal-lobe patients I have met or seen photos of, do have this distinctive scar.

This Photo Was Taken Several Weeks After Ed Began Radiation. The Scar is Healing, But the Skin is Red and Blistered...A Side Effect of Radiation.

Dr. Walpert explained to us that the incision made into the skin is horseshoe shaped, then the skin is peeled back like a flap. Then a saw is used to cut out a circular portion of the skull. At that point, instruments can enter the tough membrane that covers the brain and the tumor can be reached and excised.

The young man I met last week appeared fresh from his resection (tumor removal surgery). His incision was well on it's way to healing, but still raised and red. The shaved area appeared to have about a two or three week regrowth of hair. He was fully informed about his diagnosis and his surgery. His mother accompanied the young man as he attempted to go about taking care of some traffic tickets he'd been issued a few months back. This would be normal as a GBM patient is informed not to drive until they are seizure free for six months.

I studied this young man and determined he had probably had brain surgery two or three weeks ago. That he was probably in the 'resting' stage of 4 - 6 weeks which comes after resection, and before chemo and radiation. Just like Ed was after surgery, he seemed for the most part 'normal'. Ed's hair had been long, and Dr. Walpert lifted the hair and shaved only the near circle shape where she made the incision. So that after surgery and replacement of bone (and titanium plate) and skin, his hair above the incision and the hair inside the skin flap circle fell down and covered the incision, making it difficult to see his battle wound. This young man's hair was shaved nearly the whole right side of his head. Not shiny and bald the way it appears when radiation makes the hair fall out. His speech seemed a little bit unsteady and perhaps ever-so-slightly slurred, which seemed to come after radiation began for Ed. But I did not know this man and his speech capabilities before his surgery.

I handled meeting this young man and discussing his disease quite well...him telling me about his, and me explaining that my Dad had this same this thing. His mother asked me . . . 'Had???' with such bright, hope-filled eyes. I looked at her and said quietly, 'Yes, had. He's gone now.' I didn't want to lie, and didn't want to scare this mother and her son either.

But the young man was not scared. At this point in our conversation he told me that he was a 'miracle'. That the doctor had successfully removed all his tumor, which was the size of a plum. He told me that all his doctors were excited and optimistic for him. I smiled, but at this point, I was slowly beginning to lose my composure. Because these were all things we were told about Ed's condition.

He saw my tears, and then he said, 'Do you know most people don't live past two, three, maybe four years with this cancer? Do you know it is the most deadly form of brain cancer? Do you know only one person in the world is known to have beat it, living 22 years?' I nodded my head yes. Yes, I knew all this. My tears came because I know our Ed was so full of hope, so full of belief in his ability to get well, so optimistic, and so full of desire to beat his disease and he so wanted to live. And yet...he is gone.

As he walked away from my payment window, he was grinning, He said 'I am a miracle, and I am going to be okay'. I answered 'Yes, you are, because you have God on your side'. He looked back and said 'Yes, I have God on my side'.

I do not know this young man, nor remember his name, but I pray for him. Also, I am comforted to know that he knows God, and has faith in him, and that he DOES INDEED have God on his side. For the parents, spouses, children, friends, and other loved ones of GBM patients, I am sure there are times when this is doubted. But you see it in the GBM patient's eyes. Maybe it is God looking out of those eyes.

Ed's

2010-07-08T18:23:00.000-07:00

Ed has been gone three months now. In some ways, it seems like he was still here yesterday. In other ways, it seems he's been gone much longer.

It's funny how we still refer to things that belonged to Ed, as 'Ed's'. Ed's car, Ed's chair, Ed's tools, Ed's shop.

It's hard to think of his things as no longer his. Even though he is no longer of this world, his things...are his things.

Now his things are, by the way it goes, Mama's things. It's now Mama's car, etc., etc. But even she refers to these things as 'Ed's'.

When we get ready to go someplace...the doctor, shopping...she asks 'Do you want to take Ed's car?'

Out of all the things he left behind, I guess his car does have a special place in my heart, because he and I spent much time in that car as we traveled back and forth to doctor's visits.

When Ed was diagnosed with a GBM (brain tumor) in November, 2008, he never drove again, except maybe to move the car to a different spot in the drive way. His seizures made it impossible to drive safely, as he had only seconds warning when a seizure was about to occur. And so, the man who always drove, became the passenger.

In the beginning, he seemed pretty much the same as he always was, and he adjusted the air, adjusted the radio station and volume, and gave directions. We would talk about this and that as we drove down Hwy 316 or the long back roads he preferred. When we weren't talking we listened to the radio; an old time station that played the oldie goldie country tunes. He could get himself in and out of the car and walk inside. He could get himself to the rest room and feed himself the lunch Mama packed or I picked up at fast food.

As his disease progressed, our talking became less and less, and we rode and just listened. He could still adjust the station and volume, and I was happy to let him choose what he wanted to hear and how loud he wanted it. Mostly, he could only answer yes or no to my questions, or occasionally I could make out a word or two. Now, he pointed out directions, with few words. His speech became so garbled, I could only make out a few words. He began using a walker and he tired easily. When we reached the cancer treatment center, I retrieved a wheelchair from inside and pushed him inside. He could usually make the short walk to the restroom without a walker or chair. His meals were a little messy, but he could still eat with no problem.

In the last few months, he pointed only if I asked for help. Often, he dozed in his seat as I drove us to his chemo treatments and back home. We used the wheel chair almost 100% now. He could usually stand to be weighed, but had to sit right back down. Now I pushed his wheelchair into the restroom and then stood guard at the door until he called me or tapped on the door. I watched him closely when he ate, because he could easily get choked now, or spill his drink or food. Getting him in and out of the car was now a struggle as his strength was leaving him and he could barely assist anymore.

It's strange that as often as he had seizures, he never had one while we were on the road. Our trip to and from the chemo treatments were about 40 minutes one way. I only saw Ed have two seizures the entire time he was sick, unless the tremors he had the last three days of his life were seizures.

The other day, me and my Aunt Judy washed Ed's car. It is mostly parked under a tree, and only driven a couple of times a week, and the tree had dumped it's 'stuff' all over the car, plus a few birds had decorated it also. We hosed it off, scrubbed it down, then rinsed it. Mama asked me to take it to get the brakes inspected and so I drove it home.

Don't ask me why, but I cried all the way home in Ed's car. Ed's car. I could still see him sitting there, slumped a little to one side, a hand on each knee. I remember having to help him put his seat belt on, and thinking how cruel life can be sometimes, that the man who always took care of others, had to have help buckling his seat belt. I kept thinking how my cousin Stacy told me that a few days before Ed died, they had raised him up in bed and he had pointed out the open door, and she followed his gaze to the bird feeder by the front porch. She said the birds were flocking around the bird feeder, red birds, blue birds, brown birds. She looked back to Ed and he was smiling. I think how seeing those birds must have made him happy in that moment, and made him smile. I cry because he wanted to live, and even though he wasn't going to get to live much longer, he found something to be happy about.

(this pic taken at Christmas, 2007, one year before GBM discovered. Back row, Mama, Ed, my brother Bo. Front Row, me and my brother Bob.)

People always said, and still say, 'Ed was always smiling'. He always was. I can find comfort in knowing he still is, in Heaven.

Last June

2010-06-01T18:54:00.000-07:00

Last June, (2009)...Ed was into his sixth month of treatment for brain cancer. On June 3rd, he had his first treatment with the drug Avastin and Irinotrecan. His blood work had come back good, his blood pressure normal, and he weighed 184 lbs. He was beginning to get over some of the side effects of radiation, and he was actually gaining some strength back, his hair was growing back, and all in all he just looked 'good'.

The month before he had received the news that the treatment of Temodar was not working; his tumor had grown. Notes from his treatment book indicates Dr. Splichal (oncologist) had told him he could start treatment on this drug which had been used for bladder and colon cancer...but had just been approved for GBMs.

It seemed such a miracle, that Ed could received this drug because a) it had JUST been approved for GBM patients the month before, b) the drug manufacturer agreed to let Ed have the drug at reduced or no cost due to his not having insurance or private funding.

Father's Day came. We all laughed and hugged and made merry. The future seemed to hold some promise. Looking back, you can reflect that it did hold promise...not of a cure. But of prolonging the life of a man who so wanted to live.

Edward and son Edward (Bo) in June, 2009.

Hands of Strength and Skill

2010-05-18T19:22:00.000-07:00

Ed had hands that could make most anything. When I was about 10 years old, he made box kite frames from strips of light weight wood, and he covered the frames in paper of different types, experimenting until he found the paper with right weight and strength. After several attempts to fly kites with paper so thin and light that the paper tore in the wind, and paper so thick and heavy that they couldn't quite get off the ground, he eventually settled on sticky-back shelf liner. It was thin and light, yet durable. We went across the road from our house to the pasture where the grass grew taller than his and mama's heads, and us kids thrilled to watch him run with the kite held high in one hand, tail flapping behind him, and see the kite lifted up into the wind. He held the string in his hands and let out more and more length of it as it rose higher and higher into the sky. After it was so high in the sky we could barely see it, he would let one of us kids hold the string, and we felt like we were 'doing something'. Most of the time, the string would eventually break, and the kite was set free to fly away to the heavens, never to be seen by us again. Sometimes we wrote notes on the sides of the kite...'Please write us if you find our kite...Shackleford Road...Duluth, GA, 30036".

Ed was a carpenter by trade. He framed houses, often working with his father-in-law (my mama's dad) and several brother-in-laws. For the last 25 - 30 years of his life, he worked for one man, Kenneth Mosely, at Mosely's Cabinet Shop. Most of those years, Kenneth and Ed were the only employees, and a whole lot of the time, it was mostly just Ed. He built cabinets for expensive, beautiful homes. He also built them for mobile homes, for a local man who owned and rented them out.

In every room of my house, there is a piece of furniture my step-dad built with his hands. When my first husband and I divorced, he took with him his grandmother's china cabinet, which I loved. Ed built one to replace it. When he brought it to my house, he showed me where he had carved my name into the wood, saying, 'Now, no one can take it away from you.' He built for me a t.v. stand with a 'hole' for the VCR. He built Amber a book shelf with drawers in the bottom. He built both Amber and Jess 'hope chests'. I also have a quilt rack (on loan to Amber), a lingerie chest, several desks, a bakers rack, a corner curio type cabinet, and several decorative shelves. I have one piece that I got from Granny that is mostly just a square box with doors. I think she may have used it to put her t.v. on, I use it in my kitchen to store dishes I don't use often. I also have the tiny table and chairs and the miniature china cabinet he made for the girls when they were little. The only piece I ever let go of was an oval coffee table, and that was given to my brother. I knew it would be kept in the family there. All these pieces are special because he made them, and when I walk in any room I have reminders of him and his skill and the time and love he put into each piece.

In Ed's last year and a half, he underwent treatments that robbed him of his physical strength. He went from looking and seeming like his 'old self', to a person who had to sit down and rest, to using a walker, to a wheelchair, and back to the walker, and finally only sitting or laying down. Because his brain tumor was on the left side of his brain, his right side became weak first, and eventually was paralyzed. But his left hand picked up where the right hand couldn't. He learned to do things with his left hand and he would reach out with that hand to take your hand. He could squeeze your hand with his, all the way up until the a day or two before he passed. You could still feel the strong man he had been in his grip.

In his last year and a half on this earth, he could not build cabinets or furniture, he could not frame a house, or even build a kite. But he held our family together and kept us from falling apart, pulling us back from the edge of despair with his strong hands. And the day he died, he rose high into the sky like one of the box kites we flew in that pasture. But instead of eventually crashing to the ground, he continued on up into the heavens, and here we are, still holding the string.

The Face of Courage

2010-05-06T19:34:00.000-07:00

Reflection #1 of an Amazing Man - The Face of Courage

From the beginning of his journey into the unknown, my step-dad, Edward, or Ed, as most of us call him, never had the look of fear on his face. I did see sadness and frustration, and maybe pain, but not fear.

When he cried, it was for his family. He didn't want to hurt us. And I know he felt that him being ill hurt us.

When he came out of the operating room after having brain surgery, he was physically sick from the anesthesia and pain medications, but he did not seem afraid. When he saw his son cry, he cried, but again, I think more for his son, than for himself.

After his first round of chemo, with the results of the MRI not good, he was sad and disappointed, but I can't say he was afraid.

After his second round of chemo started, he had a time of hope, as it seemed that the chemo was going to work. But then, after months more of treatment, the tumor begin to grow again. While me and my brother hid our tears and sobs the best we could, he kept a straight face.

Ed had courage that few of us would have, knowing he had a disease that few people have ever over come. From the beginning, he was told this was a fatal disease. He was told most people die within six months to two years of discovery of the disease. But he had the courage to believe he could beat it. It took courage to endure the surgery, to endure the radiation and chemotherapy, the needles, the bad news, and the every day life of a person slowly losing their life.

I never heard him ask 'why me', or 'what did I do to deserve this?'.

I am not saying Edward was not ever afraid or never questioned God, but I am saying that IF he was afraid, or if he did question, he had the courage to keep it to himself and not bring what he thought would be more hurt to those he loved.

I hope if I am ever faced with even half the terrible news he was given that day after the removal of his brain tumor, that I can have a fraction of the courage he possessed. I hope that I can live a life of courage, and encouragement to others, as he did till the day he died.

(Note: the nature photos included in my reflections are taken at Callaway Gardens, Pine Mountain, Georgia, unless otherwise noted. These two particular plants exhibit courage in their boldness of shape, color, and presentation. May all my photos be a reflection of God's handiwork, and may all my words bring glory to Him.)

Gone...But Not Forgotten.

2010-04-28T18:18:00.000-07:00

Just a note to let readers know, Ed is gone, but he is NOT forgotten. Future posts are coming to this Blog...soon coming are some notes on why I think Ed was an amazing man.

For now, I am still getting adjusted to not having him here. My mom is slowing adjusting and that helps the rest of us adjust.

I am in the 'thinking' process of writing letters to his doctors and nurses, and drug manufacturers, all who provided tremendous care and drugs in Ed's journey with brain cancer.

So, just because Ed is gone, doesn't mean this is the end of this blog. It is just a pause.

The End of the Journey

2010-04-16T19:25:00.000-07:00

Ed with older sister, Janie, one of the last pictures taken of him.

I had planned to take Wednesday, March 30th, off from work as a 'fun day' for me and my daughters to spend together at Atlantic Station, Atlanta, and woke that morning filled with anticipation of a day of shopping, dining, and laughing and giggling with my girls.

Before I even got in the shower that morning, my Mom called. She was crying. She said 'I think Ed is not going to be here much longer, if you want to see him before he goes, you should come now'. Change of plans.

I made a couple of phone calls, threw on some clothes and drove to Mama and Ed's house.

When I arrived, Mama was feeding Ed baby food. He was awake, and aware. But, I too could see a difference from just a day or two before.

A couple of weeks now, me, my brother, sister-in-law, Ed's sister and my aunt had been taking turns spending the night with my parents because Ed's condition had deteriorated. Mama was afraid to be in the house alone at night; Ed might die while she was alone with him.

Since Hospice began just two weeks before, Ed was receiving attention from a nurse at least two times a week, an aide who bathed him at least two times a week, and had begun experiencing more pain and finally agreeing to take Lortab. Going to the toilet had become a major problem. Even when my brother could lift him up off the bed and put him on the toilet, he could not hold himself in an upright position, my brother had to sit next to him and support him. But he did not want to lay in bed and go in his 'pull-ups' as we call them. He began having coughing and near choking spells when he ate, so his food was changed to all soft foods or liquids. His meals now consisted of yogurt, pudding, oatmeal, and baby food. When sleeping, he often sounded congested.All his time was spent in bed now. He slept alot.

On this morning, he just looked and 'felt' different. We called Hospice and asked them to send a nurse. Diedre, the nurse who saw him twice a week came within two hours. She did an evaluation and called her supervisor. She then told us, it won't be long.

At this point, Mama had given Ed one morphine tablet by mouth the night before, because his pain seemed worse than ever. Ed never called out in pain. But he would squinch his eyes together, sweat, and squeeze the fist of the hand that still worked (to some degree).

Diedre said a critical care nurse would be arriving that day, and she would be staying the night with us. She told us they would begin administering liquid morphine by mouth to help his breathing and pain. It would be given every two hours. She told us anything we put in his mouth at this point, food or drink, was going into his lungs, not his stomache. She said his body no longer needed food or liquid. She explained the morphine would make him rest, and he would not feel hunger or thirst.

Ed drifted in and out of sleep that day. I don't think it sank in to any of us - Mama, me, Ed's sister Shirley, my brother, my daughters....who else was there - I am can't remember now - that this was the beginning of the end. That it was closer than we realized. But we did have a very good conversation with Ed, about where he was going, and that that was okay, that we would be alright, and that we were proud of all he had done and how long he had managed to live with his illness when he was told he wouldn't live six months with it. He listened to his favorite Bible verse and he was at peace.

Julie arrived that afternoon. We welcomed her because she was knowledgeable in the ways of the dieing. She told us what we should do to make him comfortable. She told us things we shouldn't do, lest we upset him or disturb his rest. Her presence was comforting, because now we were not alone with our ignorance.

Ed with neice Stacy on his birthday, March 28.

Julie left at 8:00 pm Wednesday night, and Stephanie arrived. She was tall and thin and blond. She was young. But again, the presence of a person who watches people die for a living, was comforting. She spent the night in the recliner by Ed's bed. She ate breakfast with us at the table the next morning.

Thursday morning, Julie returned to watch over Ed, and the house was full of people, coming and going, talking and laughing. They came to Ed's bedside and held his hand, spoke comforting words to him, and left soft kisses on his forehead, and teardrops on his chest. He woke now and then and his eyes watched us. When coaxed, he would smile. He didn't appear hungry or thirsty, but we would wet his lips with a wet cloth. When he was awake, we talked to him. We talked of heaven, and seeing loved ones gone before, and of happiness and love, and of promises that only God can keep.

Thursday evening, when Julie's shift was over, (Can I remember her name? Was it Monica?) a new nurse came in to watch over Ed. She was a black girl, I do mean black, and so pretty. We welcomed her in and she settled in to the recliner with the clipboard. She took the quilt we offered her, because the house gets cold at night. By morning, she was talking and laughing with us as if she were part of our family.

Friday, our third day of watching and waiting, the house was yet again full of people. Family and friends who wanted to be near. For some families, this is morbid. For our family, it was healing. Everyone was coming together to bring Ed love and peace, and to bring Mama and us kids comfort and company. Family that we do not see so often was coming by to sit with us.

Since it was a holiday, (Good Friday), there would be no critical care nurse today. We were nervous about that, but Monica showed us how to administer the morphine drops and the drops that helped calm the ragged, gurgley breathing. She reminded us to roll him from side to side every few hours to change his position, which helped his breathing and helped to keep bed sores at bay. She showed us how to give him Tylenol rectally. When she left, we were anxious, but knew we could do what ever needed to be done to keep Ed comfortable.

As the day went by, Ed was awake alot. He opened his eyes and watched. He blinked his eyes to answer yes or no. And he squeezed the hand that reached for his. He would also reach for a hand to take. We talked with him and prayed with him. We put cool cloths on his head and changed his position so he would be comfortable. We let him hear us laugh and talk. He was dieing, but he was being with us.

To our great relief, we received a phone call from Hospice, telling us they were sending a critical care nurse to be with Ed and us through the night. I could not thank her enough. For at this time, Ed's temperature had reached 104.5. We had begun laying cool cloths not just on his forehead, but his arms, legs and stomach too. We had given him a Tylenol rectally, and his temperature came down a degree for a short while, but then it went back up. I knew this was one of the signs that the time was near. I learned that from being with my Granny when she passed. Another sign is breathing changes. His breaths were coming farther apart and more labored. And yet another sign was the change in skin color and temperature. His feet had been icy cold earlier in the day, but with his fever, his feet were now quite warm. But the color of legs were blotchy, and the blotchiness was slowly going up his legs towards his torso.

That evening, about 8:00pm, Pam arrived. She was a tall, thin black lady. She was very nice and seemed extremely knowledgeable. We welcomed her in and she went to work accessing her patient. She confirmed what we already knew; the time was near.

That night, it was Mama, me, my aunt Judy, my brother Bo, Ed's sisters Shirley and Janie, who stayed the night. We stayed up as late as we could, taking turns talking to Ed quietly and softly, holding his hand - which no longer squeezed back, and keeping the cloth on his head fresh.Ed's breathing continued to be labored, and at times he would seem to not be breathing - up to eight seconds at a time, and then he would take another breath. He had begun having hiccups earlier in the day, and now they came ever so often, often deep and loud. But he did not seem to be in distress or pain. Earlier in the day, when I would sit and hold his hand, he would have cycles of relaxation, and then he would grasp my hand hard and I could feel the left side of his body tense and tremble. If I put my hands on his head, I could feel what would be maybe described as electrical currents...I felt like he was having mild seizure activity, but the nurse said one of the medicines they were giving him, which helps with anxiety, would prevent him from having seizures. But I do think he was having mild ones. Not body shaking, head jerking ones though. These relaxation and tensing cycles came about six minutes apart for most of the day and into the evening. But he did not clench his eyes or mouth during these events, so I pray that means he was not experiencing pain.

At about 1:00am, we all went to bed, (or to cots or pallets) to try to rest. Mama slept the least of all us, her and Ed's sisters would go in and check on him and talk to him. After talking a little while, me and my Aunt Judy fell asleep on our pallet in a pitch black room in the back of the house. A little while later I heard Ed hiccup loud and I awakened for a minute, but it got quite and I fell back asleep.

Sometime later, in the perfect blackness, I heard some one calling my name..."Carolyn, Carolyn. Wake up. It's time.' It was Pam, the nurse. I fumbled my way out of the room, Judy close behind, and made my way to his bedside. But I was too late, he had already taken his last breath.

Mama was there. She was with him when he went, though she can't remember him taking his last breath. Pam was with him up until she left Mama with him to come get me and the others. I pray he knew he was not alone, as we all promised we would stay with him to the end.

I am happy to say, he looked peaceful. He lay on his back, mouth open, eyes closed. I thank God he went in peace.

Just as we talked about on Wednesday morning, the angels came and took him away to Heaven. He has no more brain cancer, no more brain tumor, no more seizures, and no more headaches. He doesn't have to worry about laying in bed all day, having to be spoonfed, or having to have a catheter or have a diaper changed. Now, he is in Heaven with Jesus, God and all his loved ones who went before him. He walks by the stream and lays in the green meadows, and no longer walks in the shadow of the valley of death. His journey on this earth is over. And what a reward he has received for enduring that journey!

64

2010-03-30T18:47:00.000-07:00

Mama with Ed

Ed turned 64 this past Sunday. He had a 'fair' day. He slept a lot, waking up for a few minutes ever so often. He woke to people who love him. People who were waiting to see his eyes open to wish him Happy Birthday and to kiss him and hold his hand and just love him. The Lortab he takes for the head pain makes him sleepy and loopy.

He had visitors through out the day...there was cake, cupcakes, and pie. He got a bite of most of them.

His family and friends praise God for another birthday for Ed.

March: A Time of Change

2010-03-21T18:52:00.000-07:00

(Ed getting kisses from pet dog, Charlie)

March has brought change. The time has changed...it now stays daylight until bedtime. The weather has changed...we have actually seen signs of spring with warmer days and clusters of blooming daffodils. Edward's health has changed...he is in decline.

The second week of March brought a rather dramatic change in his health. Several mornings in a row, he became nauseated and vomited. This is something he never did with radiation or the two different types of chemo therapies he took. He began having episodes of coughing to expel mucous; coughing that lasted many minutes and left him gasping for breath and red in the face. But after the mucus was expelled, he could breath better and stopped coughing. He began having difficulty with chewing and swallowing meat and some other foods.His urine and sweat had a strong, distinctive odor. For the first time since this all began in November, 2008, Ed asked for pain medication.

Me and other family members began talking about hospice, in and out of his hearing distance. He and Mama were still resisting.

After two weeks of these changes, and after a particularly bad weekend, Mama finally called me last Tuesday morning and said it's time. I immediately hanged up the phone and dialed the number for the hospice center we had discussed using. After just a few minutes of discussion with a lady at Odyssey Hospice, the wheels were set in motion.

First, his oncologist had to provide Edward's medical records and give his consent that Ed was in a situation of 'end of life' illness. This was completed within hours. Then we set up an appointment for two representatives from Odyssey to come out to complete paperwork and give Ed a health assessment. They came the next day, Wednesday, at 1:00pm and the paperwork and assessment were complete by 6:30pm.

During this visit, it was explained to Mama, his primary caregiver, what Hospice is, what it does, what it won't do, and what to expect. There was a mountain of paperwork to fill out (by the RN) and be signed (by Mama). She was nice, pleasant lady, age 71, and she was methodical in her method. After all the paperwork was finished, she checked out the patient as he lay in his electric bed.

She said Ed's pulse was good, his temperature normal, his blood pressure slightly elevated, his heart rate good, his breathing rate fine and his lungs clear (which surprised me). She measured the circumference of his right arm and asked him a few questions. She checked the place on his right ankle and confirmed what we already knew, that it was a bedsore. She treated and wrapped the bedsore and was on her way.

Hospice services began the next day, Thursday. His nurse, Deirdre, came and checked him out and a man delivered some supplies and a rolling tray and oxygen machines (for later use if needed) and a new mattress that helps prevent bed sores. Later in the afternoon an aid came and bathed him as he lay in bed.

This was all good, but the two things that Mama needed help with most was not being done...getting him to the toilet to have a bowel movement, and first thing in the morning his clothes and bed needed to be changed due to the excessive urination that happens during the night. The RN had told us she didn't really have a solution for these two problems. She thought it would be best if my brother continued to come in the evenings and get him on the toilet, but that was part of the reason we called in Hospice is because my brother is breaking his back picking up our Dad. As for Ed waking up in a pool of urine and sweat - the RN said the aids could only come as their schedules allow. All they could really tell Mama was that they would be there before noon, or after.

Mama asked if the nurse could put in a catheter for Ed, so he would cease to urinate on himself all during the night (even with her assisting him two or three times during the night) and the nurse agreed that was a good idea. Praise God, it does seem to have helped with the problem of him waking up in the morning drenched head to toe. Now it is okay if the aid who comes to bathe him is running late and perhaps not there until later in the day.

My brother is still putting our Dad on the toilet most every day to try to help him toilet. Mama has tried to convince Ed to just go in his 'pull ups', but he is having a hard time with that, and I can't say I blame him.

As the new week began, and Hospice began, Ed begin feeling better. He stopped having nausea and vomiting, and resumed eating. Granted, Mama has cut out most meats and other foods that he easily gets choked on, but he is still eating well considering. He drinks anywhere between 3 and 5 bottles of Ensure a day. He became more alert and back to 'his old self', as he was a few weeks ago.

I feel like the biggest change that has occurred in the past week is the level of pain we feel Ed is experiencing. We knew he sometimes had headaches and there are places on his body that hurt if there is too much pulling and tugging or pressure is applied. But now, we find that he will grimace in pain. He still will not call out, or even ask for pain meds. But if we ask him if he is in pain, he will sometimes admit it. And if we ask him if he wants a pain pill, he will sometimes say yes. Hospice gave us a chart to use, to judge his level of pain, and for the most part it is helpful in determining if he needs medication.

Edward hates being 'zonked out' on the pain meds, but sometimes we feel the pain is greater than he will admit, and so far have been able to ease him with half a Lortab. He has also taken half a 30mg Morphine tablet at two different times, which really 'knock him out'. He doesn't like sleeping all day and missing out on life, so Mama only gives it to him when he appears to be in real pain. (signs...grimacing, squeezing his fist, rigid body, sweating). Mostly, so far we have only seen the grimaces, and sometimes some sweating.

He continues to have seizures. They come approximately 1 week apart. Sometimes so mild that mostly there is just a bit of tremor like jerking and eye blinking. Sometimes a bit longer, a bit more jerking, and either eye blinking or staring. I witnessed one today, and it did not seem as violent or whole-body-encompassing as they have in the past. His eyes stayed open wide and staring. He did not lose consciousness and seemed aware that we were talking to him. I cried. Not because I was scared, but just saddened. When the seizure, which lasted between one and two minutes, he came to himself rather quickly and seemed okay. Note to self: His left side, the side which is not completely paralyzed, was involved in the seizure...jerking of the leg and clenching and spasms in the hand. But his paralzyed right side did not appear to be involved in the seizure. Hmmm.

Ed has exceeded, once again, the life expectancy that his doctors predicted. He has lived nearly two weeks past his last expected 'expiration date', if you will. As always, his will to live far exceeds the doctors idea of when his body should shut down and stop.

But, it is apparent that his body is tired, his organs, perhaps, slowing shutting down. No one lives forever on this earth, and the inevitable is, well, inevitable. But at least Mama has finally convinced him and herself to bring in help to get to the end with help. A nurse comes in and checks his vitals and makes notes in a book for us to review. An aide comes and bathes him and changes his sheets to make his body and bed clean and fresh. Equipment and supplies are brought and eventually, when the medication on hand runs out, they will provide more, and the manufacturers who make his seizure medications have agreed to continue providing those medications at no cost. Hospice will also provide a minister when and if needed or desired.

March is a time of change. Some good. Some not so good. But as the saying goes, the one thing that remains constant, is change.

End of February Update

2010-02-27T11:27:00.000-08:00

Hoyer Lift

Ed is still hanging in there, but NOT hanging in there . (You will understand after reading this entire entry).

He has been pretty much the same since his last doctor visit in January. His health remains about the same.

He remains mostly immobile. He still has use of the left side of his body. But since the right side does not work for the most part, the left side can only do so much. He shaves with an electric razor, eats, uses the controls for his bed, etc., with his left hand.
He must remain in bed until someone takes him out and puts him in his wheelchair or recliner.
His weight appears to remain the same. He eats pretty much anything.
He doesn't like Gatorade as much as he has in the past, he drinks more Ensure.
Except for a few words, he remains without speech ability.
He still loves to watch Westerns on TV.

A few days ago, a friend of the family had a Hoyer Lift delivered. The first day it was delivered and demonstrated, my mother was very pleased with it. I knew that would be short lived. After a couple of days, Mama decided it was more trouble than it is worth. It doesn't help that my brother won't use it. Mama was able to operate it, but said it is too big and bulky and hard to move around to make it a useful item. If you haven't figured it out yet on your own, we have some really stubborn people in our family.

Members of the family and friends still continue to help when and where they can by bringing food, care items, and visiting to try to lift Ed's spirits, and Mamas.

Ed's former oncologist, Dr. Splichal, must have instructed his staff that as a former patient, Edward can no longer receive any type services, for I have placed three calls asking for advise or assistance of some sort, and my calls were not returned. I can understand not receiving any type of service or product, but advise or guidance I would think would be provided at least until a new doctor could be secured. We must find a general practitioner or family medicine type doctor to treat Ed for things such as high blood pressure, cholesterol, colds, etc. My sister-in-law finally got someone at the oncologists' office to speak to her. She explained that yes, Dr. Splichal has released Ed as a patient, and he is not receiving treatment for his GBM brain tumor anymore, but he is still alive and needs his blood pressure medicine, would they please give him one more refill until a new doctor can be found.

I was extremely pleased with the care and treatment Edward and myself received while he was a patient of North Georgia Cancer Center in Athens, Georgia. The nurses, technicians, office personel, and doctor were very caring and helpful. We were always greeted warmly, and Ed was treated with respect, compassion and given good care. We were given advise, medical treatment, and patient assistance as needed, and almost always with a smile. But when Dr. S said he is released as his patient, he wasn't kidding.

I myself, would opt for Hospice care now, if it were my decision to make. But Mama (and probably Ed also), are not ready for that. They still do not want strangers in the house. Ed may have a brain tumor, but he is still aware and I think does not want a strange person undressing him, bathing him, or cleaning him after using the toilet.

Ed still does not qualify for Medicare or Medicade or any home health care, except Hospice. He does get Low Income Assistance through the hospital in Athens. This covers emergency room visits, hospital stays and tests. But not doctor visits for colds and aches and stuff like that. He also receives help with his two most expensive (very expensive) medications, Lyrica and Dilantin, which he takes to control his seizures.

Yes, he still has seizures. They come approximately every two weeks. Sometimes just small little ones, but sometimes bigger, more severe ones. But thankfully, he still does not lose consciousness nor do they last more than a few minutes.

The Hoyer lift is on the front porch, 'out of the way'. Mama says she can move Ed better without it. Therefore, he is NOT still 'hanging in there'.

All we can do is take one day at a time.

He keeps on tickin'...

2010-02-09T16:24:00.001-08:00

...like a Timex watch!

Three weeks ago Ed had his last visit with Dr. Splichal, his oncologist. At that appointment, Ed was told the tumor in the left side of his brain had not shrank from the last round of chemo, but instead, had grown. According to the MRI done just the day before, it had grown enough to shift his brain one half inch off center.

All chemotherapy has been halted. Ed had already decided to opt out of his last two chemo treatments of the Avastin/Irinotrican cocktail. Dr. S also stopped the blood thinner, coumidin, stating he was in more danger of bleeding to death (in the event of a cut/hemorrhage) than of dieing from a blood clot. Dr. S increased Ed's dosage of the steroid from 1mg a day to 16mg a day to help with the swelling of his brain, which according to the MRI, is significant.

Other drugs, both prescription and over-the-counter, Ed currently takes are Lyrica (for seizures), Dylantin (for seizures), a high blood pressure medication, a cholesterol lowering drug, a stool softener, a Centrum 50+ multi-vitamin, and Prevacid (for stomach acid). There are other drugs he takes on an as needed basis...two different types of inhalers for his emphysema (wheezing), Tylenol for headaches/aches & pains, Lortab if he needs something stronger, and Morphine tablets in case it gets really bad, Mucinex and Benedryl as needed for runny nose, nausea and anxiety medications are on hand 'just in case'.

Ed's day begins early, usually sometime between 6:30am to 7:30am, when Mama gets him up and changes him and washes him. She then cleans and changes his bed. He sits in his wheelchair while she makes breakfast, perhaps taking his pills (twelve in the a.m.) while she prepares. Breakfast usually consists of sausage and biscuits and scrambled eggs, but sometimes there are smoke-links (hot-links), bacon or ham, gravy, grits or oatmeal, and sometimes pancakes.

Most mornings, my uncle Mert (Mama's brother) comes to get a biscuit and bring Mama the newspaper. Mama will go out and feed the cats and dogs and let them out of their pens for the day. The day is spent watching TV, reading, visiting if anyone drops by, quilting, lunching and napping. Ed loves westerns, and Mama loves court TV, so those are the two most watched things each day.

In the evenings, Mama makes dinner and sometimes has to wake Ed from his nap to get him ready for dinner. He can sometimes feed himself with his left hand (he is right handed, but his right hand is almost totally without use now), but sometimes she has to feed him, especially if he opts to stay in bed to eat. Usually an hour after dinner he takes the p.m. pills; all ten of them. The rest of the night is spent either visiting with friends or family who have come by, or watching country music shows, or Repo, Cops, or a reality TV show about living in Alaska.

Mama usually has the job of moving Ed from the bed to his wheelchair, from wheelchair to recliner or toilet, and back to the wheelchair or bed, by herself. She is pretty tough to be 72 years old, but Ed is heavy at 185+ pounds and he is unable to help as all the strength and use is gone from his legs. Most of the time, she does okay with him, but at times he gets off balance and sinks to the floor. At those times, she tries to get him up on her own, but often has to call my brother (who lives about three miles away) or a neighbor (about a half mile away) to come assist her on getting him up.

We have asked Mama to let Hospice come in and help, but she is not ready for that. The word 'Hospice' invokes such fear in the minds of the sick or the caregivers/loved ones of the sick. When you hear the word 'Hospice', you think 'death', 'morphine induced coma', and 'bossy nurses' who come in and take over. Mama (and Ed too, honestly), don't like the idea of a stranger coming into their homes. I know Ed does not want a stranger feeding him, bathing him, seeing him naked, or handling him. I know as long as Mama is physically and emotionally able to do it herself, she will.

Our friends and family have rallied around to help as much as we can and as much as they let us. When people get older, the one thing they are afraid of losing (other than their spouse), is their independence. Older people dread the day they are no longer able (or allowed) to work, drive, or live alone. The longer they can delay the end of these things, the better they feel. Me, my brothers, sister-in-laws, aunts and uncles, cousins, and Mama and Ed's friends do what we can do to keep them as independent as possible. But shopping, cooking, cleaning can only go so far. Mama really needs someone to come in and help with bathing, lifting, changing, but she isn't giving in to it just yet. They have no insurance for a home health care nurse, and Ed does not qualify for Medicare/Medicaid yet (he is on disability - 14 months down, 10 months to go) and will not qualify for Medicare/Medicaid until disability changes over to regular social security benefits. The best (only) choice is Hospice.

Ed still has his mind. He does get things mixed up...he might say yes, when he means no, or vice-a-versa. But he still tries to communicate with words and hand motions. He will still let you know if he likes or dislikes something. He still smiles and laughs when someone tells a joke or funny story. He loves to 'join in' when everyone is talking by nodding his head or just following along and smiling (or not!) when appropriate.

Ed tried to answer Dr. S question, what is your quality of life like these days, he shrugged and said well...but since he cannot speak well, and Dr S is a busy man, he never got to finish that question. Sometimes, if I let my mind wander, I imagine that Dr S feels like the life Ed has, is not worth the trouble. I beg to differ, and I think Ed would too, if he could speak. Maybe I am wrong.

Dr. S told us three weeks ago that Ed has between two weeks and two months to live according to his calculations (based on past experience with cancer patients and the 'signs'.) But Dr. S has been wrong before. We hope he is wrong again. Once again, we go back to that old familiar word that I have referred to since this journey began over a year ago...HOPE. We still have hope. Maybe we are hoping for something different now...maybe we are being more realistic about what we are hoping for. Instead of a cure, or a miraculous healing, maybe that hope now is for a good quality of life for what life there is left... filled with love, care and gentleness.

The diagnosis of a GBM brain tumor gives a man (or woman) a hard row to hoe. But maybe there is hope for a small spade to gently turn that dirt. Maybe instead of a crash landing, we can hope for a slow and soft descent.

This is the First Day...

2010-01-23T15:34:00.001-08:00

...of the rest of your life.

I know you have heard that saying before. I think the phrase was made quite popular years ago in a cereal commercial - maybe Total cereal?

(Picture: Ed resting in bed with cat Longlegs resting on top of him!)

Ed had an MRI of his brain on Monday, January 18, 2010. My office was closed for Martin Luther King Day, and I was able to help my brother get Ed to the Physician's Imaging Center in Athens, Georgia. He is now unable to walk and unable to stand unassisted and unsupported. The imaging center was unequipped to handle someone as disabled as he is, so me and my brother had to put him onto the MRI table and assist the technician in getting him situated to be able to have the test done. She told us that he would initially be inside the machine for 20 minutes, she would then bring him out of the machine to start an IV to inject dye, and he would go back into the machine for another five minutes. I determined he would be in there about a half hour. After 40 minutes I was beginning to get nervous. But she came to get us soon after that.

Of course, you do not get any type of results at the time of the MRI. Even if the technician does see something, or knows something, they are not allowed to discuss the readings in any form or fashion.

With today's technology, we are able to get these results so much sooner than ever before. The next afternoon me and my brother again loaded Ed into the car to head to see Dr. Splichal, Ed's oncologist, to get the results of the MRI. I think I prayed all the way to his office, as I'd been praying all the days before. Please God, let Ed get good news.

Ed had already decided to take his break from chemo, two chemo treatments earlier than planned, due to the overwhelming toll the drugs were taking on his body. He has become so weakened by the chemo, that his right side is almost totally useless. He cannot lift his right arm some days, and the hand does not cooperate either. If you place your hand in his right hand, he can squeeze your hand, and quite hard. But it is not helpful in such tasks as holding on to anything to lend support or in feeding, bathing, etc. His speech has worsened to the point that there are few words he can say that can be understood. Thank God, his left hand is still functioning.

We did not have to wait long to see Dr. Splichal. He came in and greeted us as usual. And then he just said it. The tumor has grown.

He explained that the tumor had grown enough to once again push the mid-line of the brain a half inch off center. He said that Edward had outlived his expectations for him, that they never believed he would live beyond six months after the surgery to remove the tumor. He stated that additional chemo would only worsen Ed's weakness and he felt like it would not help him anyways. He then told us that due to the aggressiveness of Ed's tumor and the size of it now, and the deteriation of his body, that he expected Ed to succumb to the brain cancer/tumor anytime between two weeks and two months. He said to stop giving him coumidin, that he was in more danger of bleeding to death than of a blood clot. He also said to up his steroids from 1 mg a day to 16 mg a day to reduce swelling in the brain.

I know me and my brother were momentarily stunned, and sat in silence. Then my brother asked him something, and Dr. S repeated his prediction. Then he told Ed he had fought hard and good and shook his hand. Ed was smiling up at him. Then Dr S shook my brothers hand and I hugged Dr S and thanked him for trying so hard to help Ed.

Before he walked out of the examining room, Dr. S told us there would be no follow up visits, but of course to feel free to make an appointment if we needed to come back to him. That seemed so final.

We held it together until we got in the car. Then I had to bury my head in the back seat to try to cover up my sobs. My brother put on his sun glasses to try to hide the tears coming down his face. I don't know if Ed knew we were crying. He was quiet all the way home.

Once home, we got Ed out and took him inside, greeted by Mama who wanted to hear the 'good news'. But the news was not good and she did not take it well. Her crying and questions really brought it home and finally, Ed cried too. I am not even sure he was totally aware of what was going on until we got home and we were all crying.

As usual, Ed was trying to console us; trying to make us feel better and feel like it was all going to be okay.

So. How do you think you would feel if a doctor gave you an estimate of how much longer you were going to live, and it really wasn't that long? I don't know how I would feel. Do you think to yourself, 'Today is the first day of the rest of my life'?

Taking a Break

2010-01-14T17:28:00.000-08:00

Edward was scheduled for chemo yesterday, Wednesday, January 13, 2010. However, he was so weak he decided to take his 'chemo-break' early. He was scheduled to have two more chemo treatments including this one, and then Dr. S was going to put him on a chemo break for awhile to allow his body to detox and build up strength again.

Unfortunately, Ed's body decided he needed that break sooner. He is so weak he is almost completely back to using the wheelchair for mobility, is sleeping a large part of the day, and can barely assist in getting himself in and out of bed, to the bathroom, etc.

Of course, like always, he goes back and forth in his degrees of weakness and abilities. Some days are better. Some days are worse.

My mother, his primary caregiver, who is 71 (72 later this month), is suffering from physical and mental exhaustion and depression. She's always been a physically strong person. I have seen her move furniture from one room of the house to another, but if you have never tried to move a person at dead weight, you cannot imagine how hard that is. My Granny weighed less than 90 lbs when she died, but I could barely move her from her wheelchair to the bed. Ed weighs 180-185 lbs.

Mama has barely left the house since Ed became ill. She stopped going to his doctor's appointments after the second visit because she doesn't understand medical jargon and when the doctor talked about hospice and dieing and such, she became very angry. I would rather she did not go to these visits. We have tried to coax her out of the house, tempting her with shopping trips, eating out, (which she has never liked or done very much), or even just to go out driving and looking around, but she won't leave the house.

She has kidney disease and had a stent put in an artery year before last, and I feel she doesn't go to the doctor like she should or take care of herself like she should, but she is not a child and I cannot force her to do things, especially leave the house. The only break she gets from Ed and caring for him is when some of us take him to the doctor for chemo or tests, or the once a month trip he takes to the bank with my uncle Mert. Everyone needs a break from care giving, no matter how much you love that person or how dedicated you are.

But back to Ed. His speech is down from 100% at the time of tumor discovery to about 5% usage. He can answer yes or no and sometimes you can make out a few other words. He is beginning to more and more confuse words. Sometimes he points to an object but that is not what he wants or is talking about at all. Sometimes he uses the wrong words for things. He sleeps a very large part of the day. His right arm (controlled by the left side of the brain, where the tumor is located) loses more and more use.

The doctor, Ed, and all of us, are hoping taking a break from chemo will allow his body time to detox, heal and grow stronger. He will be having an MRI of his brain on Monday, January 18, at Athens Regional Hospital. We will visit Dr Splichal the following day to get results. I ask for your prayers, that the tumor will be smaller than it was two-three months ago, when, if you recall, it had grown ever so slightly from the previous time.

My daughter sent me a devotional regarding the big 'C', cancer. The devotional says though we hate the cancer, we are scared of it, we don't understand it, and don't understand why God lets us suffer from cancer, we have to try to remember that all things are for the Glory of God. Though we don't like it, we hate it, it makes us sad, we are afraid of it...it too, has it's purpose. Here is an excerpt from that devotional:

'We go through suffering for reasons bigger than we can ever understand. We go through suffering so that ultimately God will receive the Glory'.

It is hard to understand, but we just have to keep the faith. In the meantime, please pray for Ed to have a good break from chemo, a healing and strengthening time. Please pray for my mama that she will seek help from friends, family, doctors and God. Thanks to everyone!

Happy New Year! (2010)

2010-01-01T14:34:00.000-08:00

Happy New Year Blog Readers!

I hope everyone is having a wonderful and happy day and is looking forward to much love, joy, good health and wealth in 2010! It sounds good doesn't it???

This year is Ed's second year as a brain tumor patient/survivor. He has survived one year and a month and half since the discovery of his GBM (glioblastoma multiforme brain tumor). His doctors predicted he would live about six months. He has doubled that time and working on more!

We hope this year will bring him an improvement in his quality of life. Yes, his life has been extended through and by the miracles of modern science and medicine, but he is weak, unable to speak, and pretty much dependent on others for a lot of his day to day life experiences.

Praise God, he is still able to get himself to the bathroom (be it ever so slowly!), wash himself, dress himself, feed and himself.

But he has fallen a couple of times, he falls asleep easily, he has great difficulty in expressing himself as most of his speech is completely gone. But it is evident he still has his mental capacities otherwise.

He still gives me directions to get places (by pointing), enjoys t.v., reads his Bible, and tries his best to participate in conversations, even if it is only with yes, no's, nods and hand gestures. He loves to watch westerns and don't think for a minute he can't still have an 'argument' with my Mom!

Our prayers for you, readers, is to have a Wonderful Life in 2010! Please pray we do too!

Christmas Gathering with Family - 2009

2009-12-29T15:33:00.000-08:00

Ed and his family gathered for a happy Christmas Celebration the Saturday evening before Christmas. My youngest brother hosted our holiday party again this year, and it was a grand time for us all!

Upon Ed's arrival at B2's house, my brothers got our dad out of the car, into his wheelchair, and then hoisted him, chair and all, up the (rather steep) steps that lead up to the porch and into the front door. I know Ed must have been nervous about his 'flight' up the stairs, perhaps worrying he may be dumped out on the ground, but the boys did a good job and not a even a hair was lost going up those stairs!

(Picture 1: Ed enjoying Christmas Dinner.)

The house was full of brothers, sister-in-laws, an aunt, an uncle, moms and dads, kids and grandkids, and of course, Ed and Mama. There was even two cats and a pup in the midst at one time or another.

(Pic 2. Ed and Momma)

The aroma of both deep fried and roast turkey met us in the kitchen/dining area, along with dressing, greenbeans, potato salad, squash casserole, mashed potatos, sweet potato souffle, creamed corn, and apple-cheese bake. We all dug in after Courage's husband (SOL) blessed the food. After the meal, there was 9-layer chocolate iced caked and pecan pie for dessert. Everything was delicious and there were few left overs to be saved and taken home.

(Pic 3. With the grandkids.)

After partaking of the meal we all gathered in a circle with a pile of gifts in the center. The game of 'Dirty Santa' commenced and the gift most often stolen was an IPOD station thingy that you place your IPOD in and have the music play over speakers...and a bag of assorted whiskeys. Hmmm. The assortment of Dirty Santa gifts ranged from dishes to bath and body products to clocks and giftcards, and the aforementioned music machines and spirits.

Ed ended up with a $20.00 gift card to Walmart and Mama a set of colorful, vintage glass cooking bowls. I think both were satisfied with the results.

After all this excitement, Ed looked tired and both he and Mama seemed ready to go home. After a round of pictures were taken of different groups and then a whole group, Ed was bundled back up into his chair and carried back down the steps and tucked into the car.

(Pic 4. Me, Hubby and Ed.)

Back home, they both got ready for bed and waited for us to leave so they could lock up the house and crawl in bed. Me, I am driving home and thanking God above for another Christmas with them. Who knows when it will be the last?

(Pic 5. Dirty Santa Gift Pile)

(Pic 6. Ed, Mama and Children)

Chemo Treatment No. 15 - I'll be happy for you. Tomorrow.

2009-12-22T18:37:00.000-08:00

Ed had chemo treatment number 15 on Wednesday, December 16, 2009. First, we saw Dr. Splichal for the regular 'check-in'. The hi lights of this visit are as follows:

* Ed weighed 185 lbs. He has lost 5 lbs. over the past few months. (Not a bad thing. He is 'overweight' compared to his normal weight before all this brain tumor stuff started over a year ago).

* His blood pressure was slightly higher than it has been being, with the bottom number being 90. But the nurse said he is still in the 'good' range.

* Dr. S said Ed still doing well for a brain tumor/cancer patient. He does see that the chemo has weakened him.

* The doctor examined Ed's feet, as I told him that his feet had been turning a dark purple-y color. He explained that Ed's feet were getting oxygen (he has hair on his toes...if no oxygen were getting to the toes there would be no hair growing on them), but the veins in his legs were compromised and therefore the blood is slow to return back up the leg. He did not think this was of grave concern. However, if the blood/oxygen was not getting to the feet it would be a concern.

* Dr. S also examined Ed's abdomen, in an area where we have noticed a bulging out, or swelling. Dr. S said the same thing the Physician's Assistant, Meredith, said last week. He did not feel a mass and it was too low to be a broken rib. He said perhaps Ed has a hernia in the area. He did not express that this was a major concern right now either.

* Dr. S. went over the same thing he has told us the last couple of times we saw him, that he wants Ed to take chemo treatments as usual through January 2010, and then take a break from chemo to let him regain his strength. He said he will have an MRI done in February to determine the progress of treatment. He mentioned once again that we may want to consider hospice.

I am having a hard time wrapping my mind around 'hospice'. I have believed that hospice is called in when you are ready to stop all treatment and prepare yourself for your end on this earth. However, I have been following a young man who has a fast growing cancer of the lungs ( I believe), and the person who writes the blog says that this young man goes to hospice to get support and get 'built back up' in a sense.

When Ed's doctors mention hospice, he withdraws, and I cringe. But maybe I need to do more research. Maybe it doesn't mean only that they come in to make you comfortable so you can die in peace and with dignity. Note to self: Research Hospice.

Dr. S seemed especially loving and gentle with Ed today. He hugged him, held his hand, held his face and head between his two hands. He told us how amazing it has been that Ed has come this far. Dr. S seems genuinely to care about him. But sometimes I feel he wants to give up, but don't feel like Ed is.

On to the treatment center where we scope out treatment rooms for the best seat. We chose room #4 again, as it only seats two patients and affords more privacy. Even though the room does not have a tv, sink, and only one visitor chair, it is still more attractive to us then the big communal areas. Ed's IV is started without incident.

Soon we are joined by Glenda. At first, Glenda doesn't seem to want to be put into the room with us, but the nurse urges her take this spot as chairs are running out quickly and she may end up sitting in the crowded waiting room until another chair opens up.

I sit and doze in my chair, and Glenda grows bored and introduces herself and from that point on she pretty much talked non-stop. She was in her late 50's, early 60's. She had found a lump in her breast earlier this year and in quick succession she had a mastectomy and chemo. She went on to tell us how devastating it was to her and how much terrible physical pain she had suffered and how her port was sore, and how her life had changed.

Also, today was her last chemo treatment. She was so happy of that fact. She had tears in her eyes telling me and Ed today was her last treatment, and when any nurse came into the room she told them.

I wanted to be happy for her. And I knew deep inside I was VERY happy for her, but when she told us this I looked at Ed and I saw his face and knew he was thinking, I don't have a date for my last chemo treatment. Actually, Chemo No. 18 could be his last treatment; because who knows if Dr. S will approve him for another round after his 'break'. I wanted to be happy for Glenda because she had traveled a hard road; she suffered the loss of her breast, she had a port in her chest to receive treatments through, she had lost her ability to drive - be it temporarily, she had been in terrible pain and suffered panic attacks, even having one during her treatment that day. But I couldn't feel the happiness for her like I should, because the sadness for my dad overwhelmed me and took over my emotions.

I sat and smiled at her, wished her much luck, and said all the right things, the whole time struggling not to let the tears start flowing. If they ever start, they are hard to contain and get under control. I try really hard not to cry in front of Ed in public. It would make him cry and we would be two soggy messes!

When we left, we bid Glenda goodbye. We heard her story of pain and triumph, she heard Ed's story of struggle to remain as normal as possible...what little bit I could tell between her happy outbursts. She was too happy to feel much empathy for him, and I was too sad to feel much happiness for her.

But I vowed to feel happy for her 'tomorrow', after I got past this day. It's not that it was a particularly sad day, no terrible news or anything. It's just hearing someone say 'I am finished with treatment', or 'I am cancer free', may not be something we will ever hear for him, so it's hard to celebrate at that moment because of that realization.

But I promise, I will be happy for you. Tomorrow.

Chemo Treatment No. 14

2009-12-08T16:06:00.001-08:00

Ed had chemo treatment number 14 on December 2, 2009. Some highlights of this visit with the Physician's Assistant, Meredith, and chemo treatment are as follows:

*Ed weighed in at 187 lbs. He lost 3 pounds since his last visit two weeks ago.
*His blood pressure was a little lower than the last visit, still in the 'excellent' range.
*His blood work was all normal and good, except for the levels controlled by the
medication coumidin. Meredith said his blood was a little thick, so she increased his
coumidin from 1 and half caplets alternated every other day with 1 caplet, to 1 and
half caplets each day. Meredith said that increasing the coumidin dosage would reduce some of the swelling in his legs.
*We told Meredith that Ed had a 'tender spot' on his right side, that could be a
bruised rib from a fall he took a couple of weeks ago. She checked it out and said
the spot was too low for a bruised rib, but felt he had bruised the area. She said
she didn't feel any abnormalities in the area.
*Meredith noted once again that exercise might help Ed gain strength and mobility.
*Meredith informed us that Dr. Splichal had made notes in his chart that he wants Ed to receive
four more chemo treatments, after the one he would get this date, and have another MRI,
and then perhaps take a break from chemo. She said Ed needs a break in order to let his body
build up some strength. She did not say how long the break was. I have to remember to ask this
next visit.

The chemo treatment itself was uneventful. The nurse was able to get the IV started with the first stick, though she did put it in the crook of his wrist (on top) and he had to hold his wrist just right to keep the drip going at a nice steady flow. The biggest obstacle Ed and I run into during the day at chemo is not getting him into/out of the car, not the long waits to see doctors or get chemo started, but the trips to the bathroom. It involves getting out of the chemo chair into a wheelchair, remembering to unplug the IV pump, and Ed holding onto the IV pole and pulling it along while I am pulling/pushing him in the wheelchair, and trying to hold the restroom doors open while pushing him and the IV pole into the restroom without pulling his IV needle out, or tipping over the pole, or running into anyone, and without the door slamming on him or me, and then making his wheelchair and the IV pole all fit into the bathroom in such a way he can get to the toilet. You would think the cancer center would design the bathroom doors to stay open by themselves, or at least provide door stops. If you are lucky, a mobile patient or an extra kind nurse or aid will notice your struggle and will come to your aid by holding the door while you wrestle with the wheelchair and IV pole.

But if the worst that happens is one of us gets a door closed on us, I guess we are doing okay. And, I can certainly use the workout it gives me.

On this visit, we met a lady who had had colon cancer. Her doctor discovered a mass on her colon after several unsuccessful attempts to clear up a kidney infection. She said they removed a foot of her colon and she was taking chemo as a precaution. She said the chemo treatment had made her so sick, that she had thrown up the first time in over twenty years and that she'd had diarrhea for a week or more. She actually wasn't in for chemo this day, but to get a bag of fluids because of dehydration.

Ed is very blessed that he has had very little nausea and/or diarrhea.

We had a nice visit from Sarah, Ed's former patient rep (she has a new job there now...something to do with insurance claims, I think). It is always nice when any of the employees at the cancer treatment center takes time out of their busy days to just sit and talk about 'normal' life and stuff. She is a very sweet girl and we enjoyed our time with her.

We will be going back for Chemo Treatment No. 15 on December 16. Counting down to that next MRI. He really needs extra special prayers during this time, for the slowing or stopping of the growth of the tumor. If he is going to take a break from Chemo, we need for that tumor to stop growing and even reduce some. Please say an extra one for him today!

Thanksgiving 2009

2009-11-28T17:55:00.000-08:00

Happy Thanksgiving, and my apologies for not updating you sooner on Ed's MRI results!

My brother, B2, went with Ed to get his MRI results and following chemo treatment on Wednesday, November 18. It was not bad news...but we wished for better.

(Pic #1: Back - Courage, Mama, Ed. Front: SIL (son-in-law) and Arthur)

Ed's brain tumor has grown slightly. However, what little I can understand from the MRI report, the growth is very slight, there is a bit more swelling and fluid in the cavity left from the decreased tumor, but the cortex groove (the groove you see in pictures of the brain) is still grooved and is not effacing...or erasing...becoming 'ungrooved' if you will. In other words, yes, the tumor has grown ever so slightly, but he is still a miracle patient and Dr. Splichal approves of continued use of Irenotecan and Avastin. Of course, next chemo visit on December 2, I will be asking for clarification of this.

We thought maybe Ed had a kidney infection, but his urine test was clean. We thought this because when he had a seizure a day or two before his last doctor visit, he grabbed at his stomach and he's been weaker. Now, we are thinking he may have bruised a rib when he missed the bed and took a fall. B2 asked Dr. S to check him out, but he did so very briefly, therefore it is highly possible he did bruise a rib. B2 will see if Ed can see a general practitioner at the clinic where he gets his bi-weekly blood work done.

(Pic #2: Mama and Ed smooching.)

Ed is having another 'cycle' of debilitating weakness. I have discussed this with his neurologist who feels like the Lyrica does have side effects, but side effects that should lessen with time. Now I am inclined to believe the weakness is a result of on-going chemotherapy treatments. According to stuff I have read, long term chemotherapy can result in 'chemo-brain', a condition in which the patient feels like they are in a 'fog', are unable to concentrate or think straight, and has difficulty speaking or remembering a thought long enough to form the words. From what I have read from blogs and websites, these side effects will probably not subside until chemotherapy has been stopped and usually quite a long time after it has been stopped. So it looks like Ed will have to live with 'chemo-brain' until either, a) the tumor is gone or b) he decides he doesn't want to do this anymore. Right now, he chooses to continue chemo.

My Mom says they will purchase a lift chair soon. Ed is too weak to get himself out of his recliner alone anymore, and it is becoming more difficult for him to walk, even with the aid of his walker. The wheelchair came back out this week.

(Pic #3: B2 tries to get Ed to try a meatball...a half meatball to be precise!)

Me and my girls and son-in-law took Mama and Ed a Thanksgiving meal Thursday, and I am happy to report Ed ate heartily of most of the food I took. Most...but he pushed the mac-n-cheese and meatballs around on the plate. He's never been a fan of pasta, and not really crazy about meatballs or meatloaf. My brother attempted to get him taste a meatball, and he would have nothing to do with it! However, today he said he did finally try them later and thought they tasted pretty good.

Ed and his family have so many things to be thankful for this year. Even in the face of a terrible disease, there have been so many blessings. Ed came through brain surgery with flying colors, he did wonderful throughout radiation and two chemotherapy regimens, he was approved for several different low-income/non-health care covered programs, the life-long silence between he and his first son has been broken, he has kept a positive and winning attitude through-out, and his salvation has been assured and our family has gotten closer. We can either sit and cry and wring our hands in despair over the terrible thing that has happened to him, or we can celebrate his life and continue to help him live a purposeful life and go on with all our lives, though we be changed. Thankfully, we all choose the latter!

(Last pic...B2 with Mama and Ed...Happy Thanksgiving!)

One Year Ago Today

2009-11-11T12:47:00.001-08:00

One year ago today, Ed had the first seizure, which would change his life forever. Here are the highlights of the past year:

11/11/2008:  First seizure which was misdiagnosed in the ER as heart attack. Was given several heart related tests, and sent home after four days in the hospital, with a heart monitor.

11/26/2008:  Second seizure. Upon arrival at ER was given CAT scan of the head. Mass on brain discovered. Spent Thanksgiving in the hospital.

(In the photo, Ed rests while receiving Chemo, November 4, 2009.)

12/3/2008:  Ed has brain surgery remove brain mass. Dr. Walpert, nuerosurgeon, confirmed her fears of Glioblastoma Multiforme, a deadly form of brain cancer. Predicts Ed will survive 4 to 6 months.

12/22/2008:  Celebrated family Christmas at my brother's house, From all appearances Ed looks healthy and normal.

12/31/2008:  New Year's Eve. Ed has 3rd and 4th seizures. His seizure medication is adjusted.

01/12/2009:  Ed has first radiation session which will last for six weeks. Also begins chemotherapy with Temodar.

01/14/2009:  Seizures #5, #6 and #7 come on this day. The following day he sees Dr. Mitchell, nuerologist for seizures. Dr. Mitchell adds Lyrica to accompany Dilantin in the battle to get seizures under control.

01/18/2009 through most of summer:  Ed continues to have seizures, at first about a week apart, then two weeks, and finally after gradually increasing Lyrica dosages get them under control.

03/13/2009: Ed develops a DVT (deep vein thrombosis) . . . a blood clot in his leg. Starts daily injections of blood thinners to dissolve the clot and prevent more from developing.

03/2009:  We begin to see big changes in Ed's physical appearance and abilities. He loses his hair. His face is slack and he becomes unable to walk and difficulty using his hands. There are periods of time when he is completely bedridden and wheelchair bound. His speech has become garbled and it becomes increasing difficult to understand him. Dr. Walpert urges us to bring in hospice. We talk with hospice and Ed and Mama agree it is not time for hospice at this point.

04/2009:  MRI shows brain tumor has grown back and perhaps larger than orginal tumor. Dr. Splichal stops Temodar treatments, but approves Ed to begin treatment with Irinotecan and Avastin. Our family hosts a gospel singing with friends, Ed enjoys this very much, but he is very weak and suffers a seizure in front of friends and family.

05/2009:  Ed regains some of his strength, starts getting himself in and out of bed again. Is able to help take care of himself again. This improves over the next month or so, to the point he is able to walk again, with the aid of his walker.

06/03/2009:  Intravaneous chemo treatment with Irinotecan and Avastin begin. This treatment continues as this is written, received every other week at North Georgia Cancer Center in Athens, Georgia.

08/2009:  MRI of the brain shows that Ed's brain tumor has reduced in size by half! Dr. Splichal approved continuing use of Irinotecan and Avastin.

08/30/2009:  The seizures are back after four months of freedom from them. Ed sees his Mother at her nursing home when his family got together for a reunion; he had not seen her in about a year.  After a long day visiting, Ed had a seizure.  Sadly, on September 9th, upon returning home from chemo, Ed learned his mother had died.

09/30/2009:  Another seizure and another medication adjustment. At this time, Ed is having a lot of the side effects associated with taking higher dosages of Lyrica; muscle weakness, headaches, confusion, blurry vision, sleepiness.

10/15/2009:  Ed sees Dr. Mitchell, neurologist, today. Dr. Mitchell says Ed is a walking miracle. He says that he has never seen a GBM patient with a brain tumor that has gotten smaller. He urges Ed to keep taking the higher doses of Lyrica even with the side effects listed above, as he feels those side effects will lessen over time.

11/10/2009:  Ed has a seizure after being seizure free for two months.

11/11/2009:  Ed gets an MRI to check the progress of his chemo treatments on reducing the brain tumor. He will get the results one week from today, when he goes for his next chemo treatment.

Ed has come a long way. His family was told at the time of surgery to remove the initial brain tumor, he may live six months - he may live over a year. In March of this year, we were urged to bring in hospice, that the time was near. Ed and Mama refused hospice care, and Ed has fought to overcome his disease.

Ed has never complained about his illness, his treatments, his side effects or his lot in life. He has never asked 'Why me?' In fact, when asked, he has answered, 'Why not me'. I have seen him cry, he is human after all, but he has always pulled it together and regained his composure. When he cried, it seemed he cried for his kids and wife, not for himself. He has lost almost all of his speech abilities, but he uses hand gestures and answers questions with yes and no to communicate.  Anyone who sees him sitting in a chair, would not guess he is battling a fatal disease. His hair has grown back, he weighs in at 191 pounds, he has intelligence in his eyes. He looks 'normal'. 

Next Wednesday Ed finds out if his brain tumor continues to shrink, stayed the same size, or has grown. If it stayed the same or has shrunk, he will continue IV chemo treatments with Irinotekan and Avastin. These drugs inhibit the growth of cancer cells and cuts off the blood supply to existing tumors. We are praying that the miracle continues. He has made it exactly one year from the date of his first seizure. He probably had the tumor in his brain for one year prior to the first seizure. He had quit smoking one year, to the month, of the first seizure.

This illness has brought our family closer, and has brought Ed closer to God. He has had several people talk to him about his beliefs and I am happy to know he accepted Jesus Christ as his savior as a teenager and continues to beleive today. He reads a passage from the Bible daily and beleives if it is God's will he will be saved from this disease.

We are all happy that he has made it thus far. No, his quality of life is not excellent, but it is bearable. He is able to get himself in and out of bed, in and out of his wheelchair when it is needed, and is able to walk with the help of a walker. He feeds and bathes himself. He helps my mom with breakfast by getting the ingredients out of the fridge and flipping sausage in the pan. He smiles alot and laughs, and participates in conversations the best he can. He is still very opinionated. Even though he cannot talk very well and will often fall asleep while visiting with you, he is still Edward inside that brain! He still gives me driving directions when we go someplace and tries to tell me and my brother how to put plastic on the back porch.

We wait for the MRI results...it will be a long week!

Chemo Treatment No. 12

2009-11-11T12:39:00.000-08:00

Last Wednesday, November 4, Ed received chemo treatment no. 12.

First, he saw Dr. Splichal briefly. Dr. Splichal confirmed that Ed is still doing very well on chemo with Irinotecan and Avastin. He maintained his weight; 191.6 pounds. His blood work was all very, very good. His blood was a little thin, so he changed the coumidin dosage to (1) 2.5 mg tablet one day, alternating the next day with (1-1/2) 2.5 mg tablets of coumidin. His blood pressure looked great.

Chemo went smoothly and mostly uneventful. It did take, for the first time since this journey began, two sticks to get the IV started. Other than that, everything was fine.

Dr. Splichal ordered a MRI of the brain for Ed on Wednesday, November 11. It is time to check the progress of the chemo treatments.

Chemo Treatment No. 11

2009-10-24T17:33:00.001-07:00

We arrived early at Northeast Georgia Cancer Center this past Wednesday morning. We were seen almost immediately by Meredith, the Physician's Assistant. Ed's visit was very quick and routine. The hi-lites are as follows:

* Ed gained two pounds since last visit. He is at 191 now.
* His blood pressure had dropped to 120-something over 70-something. (don't have notes with me at this time).
* His blood work was great, but his blood was a bit thick, so his coumidin dosage was adjusted again. One day he takes one 2.5 milligram caplet, and the next day take one and half 2.5 mg caplet, and the next day back to one caplet, back and forth.
* Meredith said Ed is doing good.

On over in the treatment center, Ed settled into a recliner and soon a nurse had his I.V. started and his toxic cocktail began dripping into his vein. This week, Ed chose to have his I.V. in his right arm. He usually gets it in his left arm. He never complains, but I wondered if maybe the left arm is beginning to get tired of getting all the needle action.

This visit we got to know an older couple who were there for chemo for the husband's lung cancer. After talking for a few minutes, we learned that they lived just a few miles from where Ed and Mama live in Winder, and that they also lived in Lilburn, near where we lived, way back in the 70's and 80's. They were both retired school teachers and very nice. The wife was so attentive to her husband, holding his hand while his I.V. was being inserted, and making sure he got snacks and drinks. There was also an older gentleman seated on the other side of Ed, but we didn't get much out of him, except when I said I was going to the snack machine, he gave me change and asked me to get him some peanut butter cookies.

When Ed's chemo treatment was finished, we said our good bye's and headed home. It is interesting the different types of people you meet in the chemo treatment rooms, and what types of cancers they have. So far we have not met another GBM (Glioblastoma Multiforme) patient. We may not, as I believe Dr. Splichal said he treated 8 patients with the disease last year. Compared to other types of cancers, I don't think it very common. But no matter what type of cancer, I guess everyone in the chemo treatment rooms feels a 'kinship' in a way, that everyone is there for the same reason, fighting to live.

In two weeks we will be back for Chemo #12 and should learn when Ed will get his new MRI. Both Meredith and Dr. Splichal have said it should come about in November.

One Doctor's Opinion...It's a Miracle

2009-10-15T16:55:00.000-07:00

Ed had an appointment with his neurologist, Dr. Mitchell, today. This was a regular office visit to check up on his progress and Dr. Mitchell had not seen Ed in probably four or five months as we had to cancel his last appointment due to not feeling well and not needing to be out in the pouring rain.

(Picture: What a Glioblastoma Multiforme tumor looks like. Lots of 'branches' come off of the main 'body' of the tumor and grow outwards into surrounding brain tissue. When the tumor is is cut out, the little strand like projections are so small they cannot all be removed. Therefore, a new tumor can start from a tiny strand left behind. The drug Avastin cuts off the blood supply to the tumor (and hopefully the strands) and the drug Irenotrecan stops, or at least inhibits, cell division...preventing cancer from growing at all or not as fast.)

Dr. Mitchell had not seen the results of Ed's last MRI, done August 3rd of this year. I loved the look on his face as he read it. He looked puzzled, then shocked, then just amazed. He read part of it aloud, then starting reading to himself, his mouth moving. He finally looked up and said, this is amazing. I've never seen a GBM patient have a reduction in tumor size before. It is unheard of. I have never seen this happen with a patient.l It is what you would call, a miracle. During our conversation, he said the word 'Miracle' two or three times. Me and Ed were smiling. You rarely get this type of reaction from a doctor.

Next, down to business. I told Dr. M of my concerns that the dosage of Lyrica Ed was taking was making him weaker, more confused, less able to speak. Dr. M reassured me that Ed has not 'topped out' on the dosage tolerable for Lyrica. He said yes, the symptoms do sound like common side effects resulting from taking Lyrica. However, he feels that Ed needs to stay on this drug and on this dosage. He said that with time, the side effects will lessen and the good effects (no pain, no seizures) out weigh the bad effects. He said there are other drugs used to control seizures, but they would have the same side effects as Lyrica. Also, Ed is approved to receive patient assistance with the drug Lyrica. Applying for patient assistance for other drugs could be time consuming and perhaps frustrating. He strongly urged we go with his recommendation to stay with Lyrica and wait for the side effects to lessen and/or subside. We agreed.

Other highlights of the visit; Ed's blood pressure was good, his blood work good, and Dr. M put him through several little 'tests' (raising his arms shoulder level, holding his arms up with his eyes closed, I noticed Ed's right arm would lower while doing this test...wish I had asked what that meant), touching his nose with his index finger and then touching Dr. M's finger. Some type of neurological assessments, maybe to determine presence of stroke? I am not sure. I should have asked.

Dr. M is a good man. In the past, he has told us he prays for Ed and also his statement. . .' this is a miracle', shows he is a good Christian man. I trust his judgement and treatment decisions. He shook our hands and told Ed to come back in six months. That tickled Ed. So me and the 'Miracle Man' took off...cruising down Hwy 316 towards home, happy once again to have received a 'good report'.

P.S. It is a miracle that Ed's brain tumor has been reduced. We can say it is because of the chemo drugs Avastin and Irinotecan and the care he receives from his doctors, family and friends. I know though, that this miracle is a result of God's grace. He has listened to Ed's prayers and everyone who has prayed for him. God is the only person who can bring about a miracle. All the glory goes to God!

Chemo Treatment No. 10

2009-10-10T16:48:00.000-07:00

My brother, B2, took Ed for his chemo treatment this past Wednesday, October 7, 2009. This was a Dr. Splichal appointment, and fortunately, another 'uneventful' visit.

Ed had gained one pound since his last visit two weeks ago, and is now back up to 189 pounds. His blood pressure was good...130/80. His blood work numbers were good, but his blood was a little thin so they dropped his Coumidin dosage from one and a half a day to one a day. My mom had wanted to know if Ed could take a magnesium supplement for leg weakness and pain and Dr. S said yes. Very routine.

Chemo went well and uneventful as well.

Because of the return of the seizures, Ed is taking a higher dosage of the drug Lyrica now. His dosage went from 300 mg to 375 mg about four weeks ago, and then two weeks ago went to 450 mg. Lyrica is a drug used to treat fibromyalgia and seizures. There is quite a list of possible side effects from this drug, and feel that Ed being on the high end of the maximum daily dosage allowed, he is beginning to get some of the more serious side effects; mainly muscle weakness and the loss of cognitive ability. His speech has worsened notably and he really has to struggle to maintain a single train of thought and get out anything he is trying to say.

Next week I will be going with Ed to see the neurologist, Dr. Mitchell, and I have a lot of questions to ask him about this drug, Lyrica, and the dosage Ed is taking. He had mentioned earlier in Ed's illness that there is a third drug he can prescribed to try to get Ed's seizures under control. I want to know what that drug is and if it could possibly be an alternative to Lyrica, or if a lower dose of Lyrica could be taken in conjunction with that drug. I feel that a lot of the symptoms Ed has...difficulty speaking, thinking, walking, bruising, muscle weakness and fatique could all be side effects of Lyrica. I want answers and he needs help. I put faith in Dr. M that he will work to get Ed to a better place. I have to believe this, for I feel Ed may now feel the worse he has in a very long time.

November will bring about a new MRI. We pray for God to show the doctors, us, and Ed, that the chemo cocktail he gets every other Wednesday continues to work and that the brain tumor will be even smaller than a few months ago. Maybe it will even be gone.

One can believe and have hope.

Chemo Treatment No. 9

2009-10-01T17:01:00.000-07:00

Ed's doctor visit and chemo treatment no. 9 was mostly uneventful. Every other visit Ed sees Meredith, the P.A. (Physician's Assistant), instead of the oncologist, and this visit was with Meredith. Here are the hi-lites of the visit: * His weight remained the same - 188 lbs. * His blood pressure was good. * All his blood work came back with normal/good levels. * All medications levels remain the same.

Meredith noted in her portable computer that Ed got a flu shot since his last visit and that headaches continue, he'd had a seizure since the last visit, his appetite is still at a loss and he still has the strange sensation of water trickling down his forearms. All in all, Meredith, like Dr. Splichal, feels Ed is doing quite well to be a brain tumor/cancer patient. Ed's seizures had been under control for four months, but now he has had three seizures in the past month. One on August 30, the next one approximately two weeks later, and then the most recent one was yesterday. About the same severity and endurance; no loss of consciousness, eyes rolling, mouth moving and saliva from the mouth, head and body jerking. Luckily, Ed has never fell or injured himself or anyone during one of these seizures that last just a few minutes. As always, he is left weak and briefly disoriented, but recovers relatively quickly.

At the time of the second seizure during this new round of seizures Dr. Mitchell (neurologist) decided to up Ed's Lyrica dosage from (4) 75mg capsules to (5) 75mg capsules. After I reported the latest seizure, he upped it one more capsule starting tonight. Ed now takes a total of 450mg of Lyrica and 500mg of Dilantin and 1 mg of steroids (Decadron). Dr. Mitchell doesn't seem sure why his seizures have returned. He said perhaps since Dr. S is slowly weaning Ed off Decadron (over past few months has gone from 12mg a day to 1 mg a day), that his brain could be swelling again. Or perhaps he is just having 'break-through' seizures. We are hoping the increase of Lyrica will have the desired effect.

Ed continues to get about with his walker, unassisted. Dr. S stated in at Chemo Treatment no. 8 that he wanted Ed to wean himself off the walker. Ed is scared he will fall and has not attempted to give it up yet. He is still assisting mama with making breakfast. He gets everything out that is needed to make breakfast, flips sausage as it cooks in the frying pan, and other things that Mama says are a big help to her.

He still has a non-complaining attitude and is still very pleasant and never seems to question his lot in life. He does seem to be more 'down' lately than he has been all summer. His speech is still hard to understand. I have helped him apply for assistance to help pay for speech therapy, but it's a lot of paperwork and really gets into your business. I don't know if we will ever get anywhere with it.

The strangest thing that has come about late summer and early fall, is the cat Mama and Ed have has begun having seizures. The first one happened approximately a month and half ago. This past Sunday he was sitting on the rail by the front porch and he dove off into the bushes. Mama thought he was after a lizard; I thought he fell off with a seizure because when I looked in the bushes for him he was laying still on the ground, then slowly got up. Today, Mama reported that the cat had a seizure right in front of them. Like the first one, he was laying in a chair on the front porch when he began seizing. He then fell off the chair on the floor and then lay stretched and taught, like he was paralyzed, with eyes wide open. Afterwards, he slowly came back to himself and acted normally. Mama and I have speculated as to why the cat could be having seizures. Mama did put TWO Frontline capsules on his fur a week before the first seizure. She thought it would keep him more 'flea-free' and not hurt him. Could he have gotten into some other type of poison? We just don't know. My Aunt Judy wonders if he picks up on Ed's seizure activity and responds to it. We just don't know. Ed still needs your prayers. Please pray that his seizures will get under control once again, and that his body will continue to tolerate chemo.

Please pray for Mama's health and her ability to take care of both herself and Ed. Please pray for his doctors that they will know how to treat him.

Chemo Treatment No. 8 and Sad News

2009-09-11T16:24:00.000-07:00

Wednesday, September 9, 2009 brought another trip to the Northeast Georgia Cancer Center for a visit with Dr. Splichal and chemo treatment number 8 for Ed.

The visit with Dr. Splichal came and went quickly. Dr. S was not running late for a change. We barely waited 5 minutes before he bounded in with a smile and a handshake for Ed. He told us that Ed's weight, blood pressure, and blood work were all good and encouraging. He commented again on how pleased he was that Ed's MRI last month showed a 50% reduction of his brain tumor. Hi-lights of this check-up are as follows:

* Ed weighed in at 188 lbs. That is about the same as the last visit, give or take a pound. We are especially pleased with that news, as his appetite has been less than good the past two or three weeks!

* His blood pressure was slightly higher than week before last, but still in the 'great' range.

* The blood work was all in the 'ideal' range; his coumadin (blood thinner) levels included. Therefore his coumadin dosage will stay the same.

* As per his plan, Dr. S reduced Ed's steroid dosage by half once again. He now only takes 1mg of the Decadron per day, in the morning. He said probably the next visit will bring about taking the steroid completely off his medication list.

* Dr. S said it is time for Ed to start working on walking more and getting out of the wheelchair and being less dependent on the walker. He said the only way for Ed to regain his strength is to practice walking and get more exercise. I think this is going to be his biggest challenge in the upcoming weeks and months.

Dr. Splichal closed the visit with reiterating that he feels Ed has come such a long way and is doing wonderfully. He told Ed he was proud of him and was really encouraged by his progress.

After that we went right over to the Treatment Center (located in the same building) and got settled in for chemo. It takes a few minutes for them to get his meds together...he still takes a concoction of 5 different drugs, and only the first one does he get as an injection into his IV line. The rest must drip slowly into the vein. But even at that, the chemo part usually only takes between two and two and half hours! Not bad!

The nurse, Lynn, came in to start the IV and she began with wrapping Ed's forearm in a warm towel to make the veins 'pop up'. This was a first for Ed and I think he was puzzled by it. The first stick attempt wasn't so good...the vein she used 'exploded' and she had to go in a second time, but that one was good and the rest was routine. This time one of the nursing assistants remembered to bring Ed a urinal bottle and we didn't have to play 'Wrestle the IV Pole to the Restroom' game. I just left his private treatment room and let him pee in his bottle and then he would yell when he was finished. That is the advantage of getting to the center early, getting in and out of the doctor visit quickly, so that you can get back to treatment and get a private room before they are all snatched up! Of course me, I don't mind getting a communal room, I love to talk to people. But it's not about me.

On the way home, Ed and I stopped at KFC to get lunch and I got a call from my brother. He asked me to wait at Ed and Mama's house for him to get there; to not leave before he got there. I passed this on to Ed and we pondered why he'd want me to stay and why he was coming over. He has been in CDL License school for a few weeks and we wondered aloud if maybe he had bought a big truck or something.

Once home, we sat to eat lunch, but my brother beckoned me out to the porch where he and his girlfriend were sitting and whispered something in my ear. I could barely eat after that, but sat down with Mama and Ed to pick at my plate and encourage Ed to finish his lunch. Ed asked me 'Why is Bo and Terry here?'. I replied, just to visit I think.

After he had eaten what he could, we all went to the front porch to sit and rest, and that is when Mama told Ed that she had gotten a call with bad news while we were gone. She then told him that his mother, whom we had just gone to see at the nursing home the last weekend of August, had passed away just an hour or so ago.

At first, Ed seemed in shock, and his reactions were slow. But when I asked him if he was okay, he closed his eyes and begin to cry. I hugged him, Bo hugged him, and Mama hugged him. We all cried with him. We talked with him and let him cry and then would try to make him smile. Mama had called my stepbrother, Tony, and he arrived in just a while and he too tried to make Ed smile.

We are so glad Ed got to see his Mama one last time just a week and a few days ago. We are glad he got to spend a few minutes with her. She was in pain at the time, and we smiled and laughed at how 'grouchy' she was, but looking back, we realize she was probably in more pain than anyone knew.

So, this Sunday we will take Ed and go to his mother's funeral. Please pray for him and his family.

Reunion

2009-09-06T18:45:00.001-07:00

A week ago today me, my brother Bo (yeah, that's B2) , and step-brother Tony, took Ed to see his Mama at the nursing home she lives in, in Cumming, Georgia. It was a family reunion for Ed, his Mama, two of his sisters, a cousin, and quite a few nieces and nephews.

(Picture 1. Ed, Sisters Shirley and Janie, and Mama)

It was bittersweet...as Ed had not seen his Mom in a year or more - not since before he fell ill last year...and his Mother didn't appear to recognize him. Maybe for a few seconds she did. But it was nice to see Ed's sisters and their kids all gather around to share a meal and visit. Also, to see Tony connect with a family lost to him many years ago. Bo had never really been around any of them except Shirley, so this was new family to him also.

(Picture #2. Tony, Ed and Bo.)

That night, Ed had the first seizure he had suffered in almost three months. I know it was because he had too much excitement and too much emotion. Mama called me around 8:30pm and said that Bo was on his way to help. We kicked around theories of why the seizure had come on...about his steroid dosage being reduced, about the long day he had had. After calls to the oncologist and neurologist the next morning, we blamed it on the long, exciting day, not the steroids. He has not had any more since.

Tony dropped by again today. I think Ed is getting more comfortable having him come to visit and enjoys his company. That fence...it is still on the mend!

(Picture #3. Ed, niece Bonnie and Mama)

(Picture #4. Ed's Mama, Dixie Trusty...finally got a smile on that face!)

(Picture #5. Tony...trying to hide a BIG piece of cake!)

Chemo Treatment No. 7

2009-08-27T19:13:00.000-07:00

I have been bad! I have not written about Ed's Journey in two weeks! Yesterday I went with Ed for check-up and chemo treatment. Here are some high lights of his appointment with Meredith, the Physician's Assistant:

* Ed lost two pounds since his last visit two weeks ago.

* His blood pressure was 120/70.

* All his blood counts came back good.

* His coumidin level is good. No adjustments needed on that medication.

* Dr. Splichal noted for Meredith to cut Ed's steroids in half once again. Now he is taking 2 mg
per day.

* Meredith said there is no problem with Ed taking coumidin and eating all the green vegetables he wants. His blood is checked every other week, so they will know if something has gone awry and will adjust his coumidin if needed.

I explained to Meredith that Ed has begun to experience some nausea and loss of appetite since his last visit. Also, he has weakness and shortness of breath. Meredith explained that as Ed gets more and more of the chemo drugs in his body, his weakness will increase and his appetite will continue to lessen. He has got to try very hard to continue eating well and drinking fluids. This has become a struggle, especially the taking in fluids part. My mama is getting quite frustrated with this, as she always tries to coax him to eat and drink. In the past, that really hasn't been a very big problem, now each day she reports it is getting harder and harder to convince him to eat and drink enough.

Meredith said cutting back on the steroids is not what is making him weak, in fact, taking large doses of steroids over a long period of time is harmful and will make you weak. We are hoping as he weans off steroids that some of his strength will return. Steroids do increase the appetite. Therefore; she does feel like coming off the steroids do play some part in his loss of appetite, or at least diminishing of his appetite.

There were a couple of days near the end of last week that Ed was dragging his right leg and having trouble getting out of bed even with assistance, and had to go back to using his wheel chair a couple of days. But then his strength came back in a small surge and he is now using his walker again.

Dr. S and Meredith have stressed the importance of good nutrition, plenty of fluid intake, some exercise, and sufficient sleep to keep his strength up.

Ed seems to have headaches more frequently...the tumor has decreased in size, so what is causing the headaches??? According to drug info, his Lyrica and/or Dilantin may be causing the headaches...not to mention the chemicals he receives every other week in chemo. He does take Tylenol, Lortab or Morphine, depending on how severe the headache is at any given time.

This Sunday, me and my brother and step-brother are supposed to take Ed to his family reunion in Cumming...we are hoping and praying that he feels well enough to go. Ed's mama is in a nursing home there, and he has not seen her since he fell ill last year. We all feel like he needs to see her...and she him. He will have several sisters there, and their families. I am not sure his younger brother will be there, he lives in Florida and it is difficult, financially, for him and his wife to drive here sometimes.

Senator Ted Kennedy died from his glioma (brain cancer) this week. He had the same kind of cancer Ed has...but Mr. Kennedy was much older than Ed was when his tumor was detected and Mr. Kennedy's tumor was inoperable for whatever reason...perhaps his age and the location of his tumor.

Please pray for Ed to have strength and appetite in the upcoming days, weeks, months and that he is doing the right thing by choosing chemo. Ask God to be gentle with him and help him physically and emotionally. Pray that we, as his family and friends, will know how to help him. Pray for my Mama as she continues to be the main caregiver. Thanks everyone who follows Ed's Journey.

"Half"

2009-08-12T16:22:00.001-07:00

Half is a good word.

Today Ed got the results of the MRI done of his brain last week. Dr. Splichal waltzed in assuming we had already received news from Dr. Walpert (the neurosurgeon). We had not. So he started out with..."Well, the tumor is now HALF the size it was at the time of the last MRI (May, 2009)".

I started clapping. B2 looked relieved. Ed was smiling so big it nearly cut his face in HALF!

He stated that back in May, the MRI showed that the tumor was so big that it had shoved portions of the brain that belonged on the left side of the skull over in the right side of the skull. Also, at that time, there was alot of edema (swelling). Now, with the reduction of the tumor, the left HALF of the brain was in the left HALF of the skull, where it belonged. The mid-line of the brain was centered in the skull again. Also, there is very little edema.

Because the edema (swelling) is reduced so much, Dr. S said he is reducing his steroid dosage to HALF what he is currently taking.

His blood work came back showing his blood is a little thin...the warfarin (generic for Coumadin) is working quite well, a little too well. So he wants Ed to take the normal dosage on even days, and HALF the dosage on odd days. (or vice-a-verse).

Ed had lost one pound. This is a good thing.

His blood pressure was good.

Ed did give me a look when I told Dr. S about a 'sore spot' in his groin area. I had to leave the room while Dr. S took a look...and I got 'that look' from Ed again when I came back in the room. He told me later that Dr. S had put a rubber glove on one hand to have a look-see. Hmmm...alot of looking going on. Ed said he would pay me back for that one. (He doesn't like anyone looking at his private area I take it!)

Ed's chemo took about HALF the time it took the first treatment he received. We believe because he now gets the nausea drug as an injection into the line instead of having it drip into the line.

Everyone is so glad to hear Ed's good news. I called Mama, who laughed and cried. She called several people and I called and texted others. What do we contribute this wonderful news to? First of all, to God. God listens to prayers. Ed reads a 'healing' scripture from the Bible everyday. I know God likes that. Also, he eats asparagus everyday. My husband not only believes in prayer, he believes in using the brain God gave you and he tells Ed eating asparagus helps heal cancer. Also, Ed has a 'not giving up' spirit. You have to count Mama taking good care of him into the equation too. And of course, the miracle drugs he is taking. Avastin is really making the news these days for helping reduce cancer tumors and giving people more time on this earth. Ed has a lot of people who love him and help him day to day. All these things I think are helping him fight this cancer.

I went back to work after our trip to the doctor. I have already made up HALF my time from going in to work an hour early the past few days. Even if I didn't, I wouldn't have missed this doctor visit. It was a good one.

Thanks to everyone who has prayed for Ed's healing! I hope your week is going at least HALF as well as mine!

Hoping and Praying for Good News!

2009-08-09T15:57:00.000-07:00

B2 offered to take our Dad to his appointment Wednesday, and I thought how good this was. (Because I would not lose any time at work) But the more I think about it, the more I want to be there when the news of the MRI results are delivered. My boss will let me go in early and take short lunches to make up my time.

If it is good news, if the tumor has gotten smaller, or at the least, not grown, we will celebrate and praise God!

If it is bad news, if the tumor has grown, we will be sad, but we won't be mad at God.

If the news is good, Ed will get his regularly scheduled chemo treatment with Avastin.

If the news is bad, I believe Dr. Splichal will say no more chemo. But if Ed wants to continue, we may have to wrestle Dr. S to the ground and hold him down until he says 'uncle'.

Whatever the outcome, I know Ed will be okay. It will be the rest of us who will take it the hardest. Especially Mama.

I went with Ed to a chemo appointment a few weeks ago and watched the medication clipboard to see exactly what his chemo-cocktail consists of, and this is what I learned:

He received the following drugs, one bag at a time, in this order;

1) Sodium Chloride 100ml = This medication is an intravenous (IV) solution used to supply water and electrolytes (e.g., sodium, chloride) to the body. Basically, it is salt water. It is also used as a mixing solution (diluent) for other IV medications. (MedicineNet.com)

2) Aloxi .25mg = Aloxi is used to prevent nausea and vomiting that may be caused by surgery or by medicine to treat cancer (chemotherapy or radiation). (Drugs.com)

3) Decadron 8.0mg = As an anti-inflammatory medication. (a steroid) Decadron relieves inflammation in various parts of the body. It is used specifically to decrease swelling (edema), associated with tumors of the spine and brain, and to treat eye inflammation. (Chemocare.com)

4) Avastin 833.0mg = Avastin is a cancer medicine that interferes with the growth of cancer cells by blocking the formation and growth of new blood vessels in the tumor which slows their growth. (Drugs.com)

5) Irinotecan HCI 245.0mg (generic for Camptosar) = Camptosar is the trade name for irinotecan. Camptothecin-11 and CPT-11 are other names for irinotecan. It is to stop or slow cell division in regards to treating cancer. (condensed information gathered from Chemocare.com)

Chemotherapy is treatment with drugs to try and stop growth and also kill cancer cells. In the meantime, you try to not destroy or compromise healthy cells. It is a crazy combination of stuff that kills, and stuff that protects.

Hopefully, Ed will be getting this cocktail again Wednesday.

MRI follow up

2009-08-06T19:25:00.000-07:00

We are disappointed, but we will not get any news on Ed's MRI done on Monday until his regularly scheduled appointment next Wednesday (August 12). If he gets positive news, he will go ahead with chemo that day. If bad news, chemo will be canceled. Please pray for good news.

Chemo Treatment No. 5

2009-07-29T18:14:00.000-07:00

Ed's chemo treatment no. 5 went very well today. B2 reported back today that Ed kept his weight at 190 lbs for the past two weeks. (It has been a norm for him to gain five pounds or so every two weeks), his blood pressure was good, his blood work good. Chemo infusion itself went smooth.

Dr. S had told me he would do an MRI of the brain after treatment no. 6, but I guess he has decided to do it earlier because Ed is scheduled for one next Monday. If the MRI shows the tumor is reducing in size, he will continue to receive the drug Avastin. If it shows it is still increasing in size, Dr S will stop the Avastin treatment. Oh please, please, please...ask God to have mercy and let the tumor be smaller!

A bit of encouragement received...My friend Nancy at work has a girlfriend who lives near Helen, who's husband has been fighting a battle against lung cancer. This man has tumors in his lungs, but after using the same drug Ed is on, (Avastin), his tumors have greatly reduced in size. I am really hoping and praying Ed gets the same good news.

That being said, I must say, Ed seems to be at peace with his illness. He doesn't complain, never starts a sentence with 'I wish...', or 'Why...'. He is so calm and peaceful. His concerns seem to be for everyone else around him; my Mom, his kids, his friends. He doesn't want her or any one else to worry about him or be sad. I hope if I ever have cancer or another devastating illness that I can be like him.

Prep for Chemo #5

2009-07-29T04:09:00.000-07:00

Ed is up and chemo bound this morning. Today he receives treatment #5 with Avastin and other drugs to battle his brain cancer. Please pray for him and my brother and Mom today. For Ed to receive good care, my brother to have patience, and my Mom fell in the bathtub night before last.

There will be an update later on Ed's chemo and doctor visit.

Chemo Treatment No. 4

2009-07-15T17:42:00.000-07:00

Ed came through chemo treatment no. 4 very well. Here are a few hi-lights:

*Ed gained five more pounds. He is now 190+ pounds.

*The blood work done yesterday revealed his blood is too thick. They upped his coumadin levels from 5mg to 7.5 mg per day.

*Chemo itself was relatively uneventful.

*Ed's State Cancer Aid expired 6/30/2009. It is time to re-apply for 7/1/2009 - 6/30/2010, but the renewal forms are proving to be elusive. Must call the State Aid office tomorrow to see if they mail out forms.

Only two more chemo treatments to go and then an MRI of the brain will be done to check the progress.

Other friends/acquaintances who need prayers from Prayer Angels (that's you reader!) for their cancer:

- Linda (sister of my friend Nancy, Linda has been fighting bone cancer for 10 years, faces the decision whether or not to start new, highly aggressive chemo that can harm her heart)

- Mrs. Hutchins (mother of my friend Dianne, 'Mama' has recurring breast cancer and is suffering from side effects of recent radiation - lymphodema)

- Name unknown - (daughter of Ed's friend John Henry, unknown type of recurring cancer)

What a sweet little prayer this is!

No. 4 . . .coming up!

2009-07-14T18:44:00.000-07:00

Ed went today for his pre-chemo blood work-up. He is very much holding his own as he enters chemo treatment no. 4 tomorrow. He still has not had many ill effects from the drugs. He has had ankle swelling, but there is no heat, redness, or pain associated with it.

My younger brother is taking him for treatment no. 4, as I already missed one day of work this week getting my 'trigger thumb' repaired. Thank God for little brothers. Both my brothers helped Mama and Ed around the house today. I know they are thankful also.

Please send up a prayer for Ed, that all goes well tomorrow (Wednesday). Please pray that these chemo drugs are attacking and killing, or at least reducing the cancer tumor. Please keep praying for my Mom, his primary caregiver. Also, prayers for all those who send cards, drop by to visit, and bring or send food. It is all such a big help to them emotionally!

Chemo Treatment No. 3 (continued)

2009-07-07T18:32:00.000-07:00

After we left Dr. Splichal, Ed and I headed over to the treatment center part of the building and got to pick (from a limited selection) his treatment station. If you get there early enough, you can get a room which accommodates only the patient and a family member or friend. Your next choice might be a room which holds two patients, and your next choice might be the one which holds

(Ed hooked up to receive chemo treatment No. 3)

three...and finally, there is a big communal area where people are all seated in a large oblong circle and it is quite open and quite noisy compared to the other areas.

We arrived at the Cancer Center at 8:20 that morning, but since it took so long for us to see Dr. S, we were not so early getting into the treatment center. But we were able to get a room that seated only three patients and only one other patient occupied it when we arrived. At 9:40 Ed was hooked up to bag #1 of 5 bags of different drugs he would receive intravenously over the next several hours.

The gentlemen seated in the next treatment station was Homer, age 76, former board of education member, former resident of Ellijay, Georgia. Homer was of a quite and gentle nature. He lay in his recliner with his left arm propped on a pillow and his feet raised. He said hello and Ed and I said hello...I asked 'how are you', and he replied, 'I am fine now'. He explained that the nurse had a hard time finding a vein. Luckily for Ed, his veins are quite visible and plump and the nurse got it the first stick and without fanfare.

Homer's wife sat on a stool near her husband's feet and quietly and haltingly told their story. They were retired and moved to Athens from Ellijay five years ago at their daughter's urging, so that Homer could receive better care for his emphysema. Homer had begun to have stomach problems earlier this year.They had a cruise planned for spring but the wife didn't feel they should go with all the stomach problems her husband had been having, but he insisted they go. She stated that he barely a bit the entire trip. Upon their return she insisted he see a doctor. Tests revealed he had pancreatic cancer. She said Homer had just had surgery to remove the cancer about three weeks ago and this was his second round of chemo. She said Homer had lost 40 lbs since the onset of his illness.

We didn't know Homer before today, and to just look at him, you would never guess he had any type of cancer. He would dose off during his treatment, but otherwise seemed fine. He was a gentle speaking, humble man. Homer's treatment lasted only about two hours, and soon he and his wife were packing up their stuff and leaving.

Ed lay on his recliner and patiently took his bags of liquid Hope. After Homer left, Ed inherited the gizmo that attached to the IV line that alerted the nursing staff when a bag was empty. At 11:00 he was on bag #4 which was the Avastin, the drug we are putting all our hopes and prayers into.. I left to get us some lunch and was back in twenty minutes with a sack full of Krystal's and french fries. We ate 'picnic' style at the treatment station...Ed sitting up in his recliner, me in my straight back chair, balancing burgers, fries and drink on my lap. As we ate, a nurse (or technician?) came and changed Ed's IV to the last bag of drugs. We were on the last leg of this treatment.

Twice while receiving his drugs, Ed had to use the restroom. Now, that is an experience! He cannot walk unassisted and here he was attached to needles and tubes, which were in turn hanging on an IV tower, which looks like a pole on wheels. A very sweet nurse showed us how to work as a team to get Ed to the bathroom and not interrupt treatment. I helped Ed move from his recliner to a wheelchair, unplug the IV monitor gizmo, (it works on battery backup long enough to provide restroom breaks), position the IV tower in front of Ed in such a manner that the can grasp the handle that juts out from one side...then as I pull the wheel chair backwards out of the room, Ed has both hands on the IV tower and pulls it along with him. At the bathroom it is difficult to hold the hinged door open with one arm or foot and maneuver the wheelchair in such a way that you can push wheelchair with IV tower in front and get them into the bathroom without smashing the IV tower, the patient or yourself. But it is do-able, and it was easier the second time around. Thank God, Ed can stand and urinate with the aid of bars and locked wheels on the chair. Then he yells ok or rams the door with the wheelchair to let me know he is finished. Whew!

I went up to the front of the building to use my cell phone (as there is very limited access in the treatment center of the building) and when I returned I sat down to wait out the last of the drugs when Ed looked at me and said, 'Are you ready to go?'. I looked at him puzzled and noticed he had his 'check out' papers in his lap. I looked and saw that the IV tower was empty of tubes and bags and clip-board, and the IV was gone from his arm. I hadn't even noticed!

Homer's wife remarked that when you left the house to go for chemo, you packed just like you did when your kids were babies. She is right. We brought a big carry all with Ed's treatment notebook, my reading material, snacks, drinks, wipes, and any other items we felt like we might need. In the trunk of the car is another bag. It contains wipes, towels, spare shorts, spare adult pull-ups. Just in case Ed has a 'bathroom accident'.

This was Ed's third chemo treatment, it was my very first experience with it. Ed has brain cancer, and he is gravely ill, but when I look at some of the other patients receiving chemo, I cannot help but think how well Ed looks compared to some of them. Some are bald, some are so painfully thin, some have skin as gray as clouds on a stormy afternoon. I praise God for Ed looking and feeling and doing as well as he is.

Next week...Chemo treatment No. 4.

This is what a 'communal' chemo treatment room looks like.

Chemo Treatment No. 3

2009-07-02T18:34:00.000-07:00

(This is not one of the side effects Ed has experienced from taking steroids for brain healing and swelling).

I had the pleasure of taking Ed in for his 3rd chemo treatment yesterday (July 1, 2009). My brother advised me to get us to the Cancer Center early in order to secure a 'private' room. However, anyone who knows me well, knows I am rarely on time, what less early.

We were on time, but unfortunately, Ed has to see Dr. Splichal before receiving chemo and I have known Dr. S to be 'on schedule' only once since Ed began seeing him late last year. No hard feelings for Dr. S, I know a lot of unforeseen things happen in a cancer treatment practice.

Our appointment was for 8:20am, and Dr. S came in to see Ed finally at about 9:15. Here are the highlights of this visit:

*Ed weighed in at 185.6 lbs. Up one pound from three weeks ago. A total weight gain of about 25 pounds since last November.
*His blood pressure reading was 80/100. The bottom number is up, but nothing to freak out over.
*His blood work was good.
(Dr S answered the following questions we had)
*Is it okay that Ed is urinating a lot - to the point of excessively (getting up 3 or 4 times during the night and still waking up with a soaking wet 'pull-up'. Yes, this is okay and desirable. He drinks a lot of liquids during the day to combat dehydration and to flush the kidneys.
*What causes his ankles to swell, is it dangerous, can anything be taken or done to reduce this swelling? The ankle swelling is probably caused by a nutrient (or mineral) being drained from his body by the cancer. The nutrient (cannot remember the name of this nutrient!!!) is being depleted and it is needed to help the body return liquids from the extremities back to the main body. It is not particularly dangerous, only uncomfortable and startling to look at. If any swollen areas become hot to the touch, painful or red and angry looking, then it could be a problem (such as indication of a blood clot). Neither heat nor cold compresses help this type of swelling. A water pill or other fluid evacuating drug would not help this type of swelling either. Suggested wearing tight hose purchased from drug store and elevating the legs.
*What causes the sensation of water trickling down the forearms and shins? Dr S seemed a little perplexed by this. He said he didn't think he'd heard of this before but was sure it is caused by either the location of the brain tumor or side effects of steroids and/or chemo.

Dr S. decided to reduce Ed's dosage of steroids from three 4 mg tablets a day to two 4 mg tablets a day. He said he was concerned that the dosage and the length of time taking the steroids would effect Ed's sugar levels...meaning he could develop medically induced diabetes. Other side effects blamed on the drug since he began taking them in November of last year...red 'blood blotches' appear on his arms, hair growth all over his body including knuckles of his fingers and toes, weight gain, muscle weakness, tingling in arms and hands. Dr S. is hoping to slowly wean him off steroids. Very good news...since Ed's last visit to the neurologist three weeks ago and subsequent medication adjustment for seizures, Ed has not had a seizure for exactly 4 weeks now! Hallelujah!

After Dr. S finished up with Ed's check up, we headed to the other side of the building to get set up for chemo. I fully expected to be at the center a good 5 to 6 hours from that point, but it ended up only taking about three hours. More details about Ed's 3rd chemo and my FIRST experience with it (as an onlooker) in my next post.

First Side Effect Appears

2009-06-22T17:50:00.000-07:00

(In this pic with B2, you can't tell Ed has brain cancer!)

I got a call at 7:10 this morning...my Mom was upset and crying. She said Ed's tongue was bleeding. She said his tongue was red all over like he had been sucking on a red hard candy, but he had had nothing to eat or drink yet. She said they dabbed it with a wash cloth and it came away with blood on it.

I told her I would leave right away and come get him and take him to the doctor, but she suggested I call the doctor instead. I placed a call with the answering service for the doctor on call at 7:14am and the operator said I would get a call back.

I talked to Mama more and she said there appeared to be two 'splits' in Ed's tongue and upon shining a flashlight at the back of his mouth she could tell his throat was angry red and irritated in appearance. She said that Ed said no when she asked if it was painful...in either of the tongue or throat. She also said that this was difference in appearance from the mouth fungus, thrush, that he'd had before. It was not yellow and crusty like the mouth fungus.

I went on to work and by 8:00 am I still had not got a call back from the doctor on call from the staff at the North East Georgia Cancer Care Center. I decided to call the center and ask for a nurse. I spoke to the very lovely and helpful Dawn. After listening carefully to my description given to me by Mama, she explained that this is actually quite common in cancer patients. I told her my Mama had started having Ed wash his mouth with Magic Mouthwash and it was suggested by a family friend who's mother and mother-in-law both took chemo, to wash his mouth with a solution of water, salt and hydrogen peroxide. She agreed both those were good for him and do the salt water solution after meals.

Ed had not wanted to eat breakfast because of the blood, but after washing the blood out his tongue immediately started to look better, and after looking at it for himself in the mirror, he agreed to eat. The nurse at Cancer Care urged us to keep him eating and drinking plenty of fluids.

Later in the day, Mama reassured me Ed was fine, feeling better and enjoying a visit from friends. Thank God, he and we have survived yet another bump in the road on this journey with brain cancer.

A New Look

2009-06-16T18:29:00.000-07:00

Hey - Just wanted to change Ed's page up a bit! I think blue is more 'his color'. He looks good with blue! Ed went in today to get his blood work done in preparation for his next dosage of chemo/Avastin tomorrow. So far, he has very little side effects from the first dose two weeks ago. He has been doing more for himself, and has had two small episodes with diarrhea, and one small episode of nausea, but that is all tolerable and manageable.

My sister-in-law was supposed to take Ed tomorrow, but she smashed her pinkie a few weeks ago and is having a bad reaction to the medication she ha s been taking for it, and now she is too sick to take him. B2 is still unemployed, so he has graciously accepted responsibility for taking Ed to get chemo a second time. I told him I will give him a break in two weeks when Ed is due for Dosage 3.

My problem is I don't get paid for days off from work, and I will not get paid for being off for the 4th of July holiday (on July 3), but it's all good. God has always provided in the past, and he will continue to do so. I hope all goes a little more smoothly at the Cancer Center tomorrow...hopefully, my brother will have no run-ins with the nurses.

Smaller Head Lump

2009-06-14T18:59:00.000-07:00

The lump on Ed's head - where the tumor lays beneath bone and skin and titanium - has gone down. It appears the swelling in his face has gone down, also. Mama reports that he has one bout of diarrhea, but nothing serious. She also says that Ed has been doing more to take care of his personal needs such as getting a drink from the fridge and bathing unassisted. One morning he stood from the kitchen table and walked to the stove without his walker. She is unsure if he did this on purpose, or just forgot to use it! She is excited by his progress and I think this boosts both my Mama and Ed's moods and spirits. His speech has not improved a whole lot, but he has taken to wearing his dentures more often and I do think that helps with his speech being more easily understood.

Here are pictures taken this weekend:

Picture 1: Ed - he wanted a picture up close to see if his smile is straightening up yet...it is!

2: Ed and my cousin Stacy.

3: Ed, Mama and granddaughter Arthur

4: Ed and Arthur

First Avastin Treatment Goes Well

2009-06-10T19:21:00.000-07:00

Ed received his first treatment of Avastin last Wednesday. The nurse told me he was to arrive at 9:20 a.m., and by 9:40 a.m., he would be hooked up to his I.V. and begin his Avastin/chemo drug infusion. My brother (B2) elected to take Ed to his first treatment, as he is currently on a (very) flexible work schedule (as in laid off and working whenever he can).

Therefore; I do not know what happened except for the bits of info I have gotten third hand, from my Mom, and bits I have gotten from Ed himself. Remember, Ed's tumor has affected his speech and it is very difficult for him to express himself and difficult to understand what he does manage to get out. For whatever reasons, Ed's I.V. didn't get started until about ten minutes till eleven that morning. He and my brother didn't leave the cancer center until about 4:30 pm. So I take it the chemo treatment takes approximately five hours to complete.

Somewhere in between, B2 went to get them lunch which they ate at the center, and my brother had a run-in with a nurse who apparently wasn't looking where she was going and nearly plowed through my dad and brother while they were making a trip to the restroom. A trip to the restroom involves pushing my dad in a wheelchair and pulling the I.V. tower along behind.

My brother has many gifts, skills, and attractive attributes. Patience is not one of them. According to rumor he had words with the nurse. I am glad I was not present.

I think for the most part, everyone at the cancer center is very focused on the patient and tries hard to be kind, caring, informative and helpful. Dr. Splichal is especially kind and knowledgeable. The nurses seem to truly care and take pains to be gentle and soft spoken. Even the front desk clerk and the check-out clerks are usually very pleasant and sweet. I have run into one nurse (aid???) that I didn't find to be very friendly or approachable, but I've not seen him at the office but once. I think it takes a very special person to work with people who are very sick and/or dieing. I think these persons have to have something inside them that allows them to be knowledgeable, but also sympathetic and supportive. They have to have a little bit of angel inside them to be able to have patience with the cancer patient and their families. I thank God for these doctors, nurses, aids, clerks, and anyone my dad or us come in contact with.

So far, Ed has not had any side effects from his treatment. He receives medications along with his chemo and Avastin to combat nausea and vomiting. His normal side effects of having cancer, a brain tumor, and all his medications have not gotten worse or better. He was informed that 10 - 12 after his treatment he could begin having diarrhea. Ed and my mom have an arsenal of foods and medications on hand to combat it if it happens. Today was the 7th day after his treatment. No diarrhea yet.

Ed also had a follow up visit with his neurologist this week. The neurosurgeon suggested he have a follow-up with the neurologist to see if his seizure medications could be tweaked, as he is still having seizures...usually about two weeks apart, and usually having at least two about an hour or so apart. On a scale of 1 - 10 , 1 being a very weak seizure and 10 being a full-on, grand Mal seizure, I'd say his are somewhere in the middle...maybe a 5 or 6. The neurosurgeon kept his medications the same, but upped the dosage of one and changed the schedule a bit on when to take them. Hopefully, this will eliminate or reduce the number and severity of his seizures.

Ed will go for his second chemo/Avastin IV infusion next Wednesday, June 17, I think. My sister-in-law (B1's wife) will take him on that visit. Hopefully, that visit will go a little smoother. I'll let you know. Ed continues to have his good sense of humor. This past weekend he showed me the thick growth of hair on his legs, arms, hands and fingers, caused by the steroids he takes. He told me he has a job. "What???" I asked. He said yes, he would be on T.V., in a commercial. I am still looking at him with my eyes narrowed. Yes, he said, I am doing a Geico commercial. No caveman suit needed.

Hope is alive!

2009-06-02T18:43:00.000-07:00

Ed with son-in-law (Hubster) and granddaughter Courage.

Praise God from whom ALL blessings flow! I got a call from Dr. Splichal's office today (Ed's oncologist)...Ed will begin his Avastin treatment tomorrow! Yeeeeaaaahhhhhh! The patient services coordinator informed me that although Cancer State Aid has not yet approved payment, she is sure they will eventually, and she is pushing Ed on through for treatment! She said if Cancer State Aid funding is depleted, she is sure the drug manufacturer will give patient assistance with the drug.

My brother is taking him to his first treatment. The instructions were to eat a good breakfast and be prepared to have lunch there. This drug is administered via IV and takes hours. The Avastin is not actually the chemo drug, I am not sure of the name of the chemo drug that is taken with the Avastin, but the Avastin is a drug taken with chemo to enhance it and to also act on it's on to cut out the blood supply to tumors.

I thank God that this young lady has worked so hard to get this drug for him and for having patience with me as I call every few days to get an update. I really thought she was ready to crown my head (and not with jewels) yesterday when I called her. I think I could hear her speaking through clenched teeth. But God bless her, she kept her cool and delivered the good news today.

Just a reminder, this is not a cure. If the drug does it's job and Ed's body is responsive and tolerant, a dose of this drug every two weeks for six to twelve treatments will at the most reduce the size of the tumor, at the least it will slow or stop the growth of the tumor. Thank God it came through because as you know, his tumor is growing. His headaches are becoming more frequent and bothersome. He doesn't want to take the Lortab prescribed to him, but for the past few days he has reluctantly given in to our pleads to take it to relieve his pain. I am praying that the drug will start working immediately and relieve some pressure on his brain. No, it is not a cure, but the hope is to prolong his life and better the quality of his life.

Hope is alive. It comes to us in the form of a colorless, odorless, astronomically expensive liquid that will be dripped into his vein through a tube and needle. It comes in the form of stories shared by others who have taken Avastin with good results. New breath of hope comes to us in the form of cards received by family, friends and strangers with well wishes. It is delivered to us by people who have been on their knees praying for healing and gentleness. It is felt in the hands of nurses, doctors, office assistants and kind people we meet with each trip to the doctors. Hope is still with us.

Bad News, Good News...sort of.

2009-05-23T19:19:00.000-07:00

(This picture was taken of Ed while at the oncologists office Wednesday, May 20, 2009. Waiting to see Dr. Splichal to get MRI results. He was not real happy with me taking pictures at the doctors office!)

First, the bad news; Sadly, Ed did not get good news yesterday. The MRI he had of the brain on Monday shows that the chemo is not working, and the brain tumor is growing. It is pressing on the part of the brain that controls speech, we can barely understand him now, and it effects his strength. The oncologist is halting the chemo drug Temodar.

The Good News...However, the drug Avastin was approved for brain cancer just 14 days ago and if he qualifies for it, he may take a round of it to see how his body tolerates it. It is given by IV instead of mouth (like Temodar is) and will be harder on his body. The worst side effect is the possibility of internal hemorrhaging.

Ed did cry when the neurosurgeon explained that a second resection of the tumor (removal) is not advisable as it would probably erase his memory, but he is a very determined man and is not giving up hope. As soon as we got home he asked for his Bible and went to Psalm 103, verses 1 - 5.

Psalm 103

Of David.

¹ Praise the LORD, O my soul; all my inmost being, praise his holy name.

² Praise the LORD, O my soul,
and forget not all his benefits-

³ who forgives all your sins
and heals all your diseases,

⁴ who redeems your life from the pit
and crowns you with love and compassion,

⁵ who satisfies your desires with good things so that your youth is renewed like the eagle's.

Ed wants me to gather all the info I can on Avastin and this weekend we will go over the info and he will have another 10 days or so to come to a decision to try this new chemo or to stop all treatment.

Please keep Ed in prayer as he considers his options and reality sets in even more, my mom, who is with him 24/7 and his primary caregiver, and his doctors and nurses who treat him.

Otherwise, he is eating good (gained 8 1/2 pounds in 4 weeks), all his blood work was normal and good, they are backing off on his coumedin levels (blood thinner), and he is still able to walk with his walker. The steroids he has been taking in high doses since his brain tumor removal in December 2008 is taking a toll on his body. His strength is compromised, he has dark red blotches on his skin, the skin on his feet and head is dry and flaky, his ankles and above his knees swell, and his hands shake. He gets headaches, but even though he has Lortab and Morphine on hand, he will only take Tylenol. He rarely EVER complains about any of these ailments. A few weeks ago he had thrush in his mouth and throat so bad that his tongue looked like a walking corpse on a zombie movie. His tongue was a dried out, yellowed, crusty thing. We only discovered it by accident because he doesn't complain about pain! We try to explain to him that pain is a warning signal and he needs to tell us when he is in pain, no matter how small, so that we can help him get treatment for whatever is causing it. But I know he doesn't want to make us worry.

With all this going on, I honestly say, Ed is a pleasure to be around. He almost always has a smile on his face and sometimes he says the funniest things! Today we tried a dish that a relative sent over and though it wasn't horrible, it wasn't delicious either. My mom decided to give the remainder of it to the dog, but the dog turned up his nose and walked off. Ed told my mom to be sure to not let his beloved pet, LongLegs, (the cat), go out to where the food was because Charlie, the dog, would eat the cat. Then he got a big smile on his face and said, 'Because the cat would definitely taste better than the food'. It was hilarious. Here is this man, living with, and fighting the worst type of malignant cancer known to man, and he still cracks jokes. I guess you just had to be there.

I read all the information I found on Avastin to Mama and Ed...all the good stuff, and all the bad stuff. Now he can make a more informed decision on whether or not to try this drug. Honestly, with all the positive things being said by the maker of the drug (Genentech/Roche), medical and science magazines, and persons who have taken the drug or know someone who has, I hope he decides to give it a try.

Thank you all so much for your love, support and prayers.

P.S. Please pray for James Logan Brantley, an Oconee Senior, who was just diagnosed with Lymphoblastic Lymphoma, a very aggressive and fast growing cancer. His father asks for all us Christians to pray for his son's healing.

P.S.S. I was present today when Ed received cards from a member of my church and my brother-in-law and sister-in-law. He really lights up when he gets these notes of well wishes and 'thinking of you'! My mama arranges the cards he receives on a book case in his room, so all he has to do is look up and see that people are thinking about him and praying for him.

Blood and Images

2009-05-18T18:48:00.000-07:00

Ed had blood work done today and the greatly anticipated MRI of his brain. The blood work is routine...to check platelets, red and white blood cells, coumadin (blood thinner) levels and dilantin (seizure medication) levels. The MRI is the second one after surgery and should be very telling. Keep him in your prayers...ask God to continue being gentle with Ed, and that the MRI will show improvement...shrinking of the tumor. He continues to have seizures. They are usually spaced about two weeks apart, but the last one came sooner. But it wasn't as severe as the last two. My mom is doing a good job of taking care of Ed. I wish she would get out of the house some and take some breaks, but she won't leave him. The only break they get from each other is when Ed has doctor appointments or tests, like today. She won't go anymore because she gets angry with the doctors when they don't say Ed is improving, and she ends up being depressed. I will be taking off work all or most of Wednesday to take him to the neurosurgeon and the oncologist to get test results. We need all your prayers!

His sense of humor is intact

2009-05-03T19:02:00.001-07:00

Ed's sense of humor is intact, alive and well. His hair is just beginning to grow back in the bald zone (the left side of his head where he received radiation treatment), but it is small, fine, hairs that you can barely see at this point.

My mom found an old wig of hers from years and years back and Ed decided to put that wig on! It is quite hilarious to see him in the wig. Ed's dad actually had a head of hair that thick and that big and that wild, so seeing Ed with that wig on is reminiscent of his dad's ample mane.

You can see by the look on his face that he is enjoying making a little fun.

Tomorrow, Monday, he has an appointment with the PA at the oncologist's office. Things we will have checked out:

* The continued swelling of his ankles and puffiness in the face.
* The red markings that are popping up on his arms (caused by chemo??)
* The readings on his blood work which was drawn Friday.
* His weight and BP.
* Okay to order the next round of chemo? (Want to avoid a delay such as we had this last time. It put him a week and half later getting his chemo treatment started than was scheduled).

In a couple more weeks he'll have an MRI of the brain and we will see what is going on inside that head of his. Please keep praying for his well being, his healing, his quality of life. Please keep praying for my Mom to keep her wits about her to take care of him, to have the strength to keep going, and that depression won't get her down. Keep praying for his doctors that they can keep helping him.

Edema and the causes of

2009-04-29T19:04:00.000-07:00

Ed finished up chemo a few days ago, but has been having some swelling in the ankles. A call to the oncologist and we think he is drinking too much Gatorade (loaded with sodium) for a sedentary life style. After 24 hours without Gatorade the swelling has gone down, but his leg still giving some problems. Is it a side effect of the chemo or is it a new blood clot? He gets blood work done Friday and back to oncologist Monday. Maybe some answers on Monday. Hoping he can hang tough till Monday!

Chemo - Part 2, Round 2

2009-04-22T18:11:00.000-07:00

Keep Ed in your prayers. Tonight he starts Chemo Part 2, Round 2. He takes a high dose of Temodar for 5 nights in a row and then will be off again for 3 weeks. This round was late...9 days late in fact, due to the fact his meds didn't get delivered in a timely fashion. Will order the next round earlier and hopefully will have better results. Please send up a prayer...for Ed's body to tolerate the chemicals, that the chemicals will attack and kill tumor and cancer cells, that it won't make him sick, that it won't make him too weak, that God will continue blessing Ed and all those who care for him and love him.

Sometimes, it takes more...

2009-04-20T18:20:00.000-07:00

I opened an email yesterday, titled 'Nominated Best Commercial of the Year'. I really thought it would be a commercial about beer or a woman licking ice cream off a famous nude statue or a crafty car commercial designed to make you want to go out and buy THAT car RIGHT now!

Instead, it was a commercial by Pfizer, a leading medical drug manufacturer. You see a teenage boy using spray paint and you see him spraying buildings in the dark. Then you see him go home the next morning to a harried and mother, who was wonders what terrible business her son was up to all night that he couldn't come home till morning. She sees the paint can in his hand and you see the hurt and disappointment in her eyes. The boy makes a bee line to a bedroom where you see a child laying in a hospital bed hooked up to oxygen. The point being, the child is very, very sick. Then you see the boy pull the curtains wide to the morning sun, the child sits up and sees what the boy has done. He has painted the buildings across from their apartment with flowers and the words 'Be Strong'. The girl smiles. The mother mouths 'thank you'. The ending message is...Sometimes it takes more than medicine.

I believe that. I feel that if Ed relied on medicine alone, he would not be doing as well as he is now. He would not be getting in and out of bed unassisted, or walking to the bathroom, no longer having to rely on a urine bottle and bed pan. I feel like he would still be being fed by someone else, and having to use a sipper cup with a big handle. This past weekend I watched him pick up his walker and go to the bathroom with very little assistance from my Mom. I saw him open a bottle of Ensure. And he was sitting on the sofa, not laying in bed or in his wheelchair!

I feel that all the care and attention Ed has received from my mom, my brothers, sister-in-law, uncles, aunts, friends, extended relatives, ministers, doctors, and my self, have lifted his spirits and bolstered him. The cards and notes he receives brings him smiles.

My brothers cut the grass and bring in wood for the fireplace, my sister-in-law takes him to many appointments, has administered shots, and does grocery shopping. Friends bring food and laughter. My uncles come to visit and share a joke or story over breakfast. I do what I can do too.

All this helps him feel 'normal' and have good quality of life.

Yes, the medicines attack the physical ailments of Ed's body. But sometimes it takes more than medicine.

If you would like to see the commercial, try this link:

Graffiti_-_Pfizer_Commercial.wmv (7858KB)

Back on the right track...

2009-04-15T04:11:00.000-07:00

I took Ed to his bi-weekly check up with his oncologist on Monday (4/13), and despite the seizures he had last week, he got a good report.

He had gained back 2.8 pounds and is now back up to 170. His blood pressure was 118/80 - very good! All his blood counts were good and the dilantin and coumadin levels were in the excellent range. His platelets were slightly down, but not so much as to cause alarm.

He was given the go ahead for his next chemo treatment, round 2 of a series of 6 rounds. Now just got to wait for the Temodar to be delivered.

Dr. Splichal wants Ed to continue exercising, and work up the strength to start walking again. Yeah! He said he was encouraged by Ed's improvement over the last two visits and felt like he could walk again with practice and exercise.

He will continue to use the anti-fungal medications as needed, but his mouth looked good. He also felt like Ed was doing a good job keeping hydrated. We had him look at his scar from brain surgery, and he felt like the redness in that area was residual radiation skin burn.

Dr. S also told me to get with Sarah, the WONDERFUL person who does alot of the leg work for getting medications and other types of help for patients, to look into the drug that was recently approved (or so we hope) for GBM. Yeah!!!!

Kudos to my mom who has really stepped up and took care of my step dad, even though she is not a nurturer by nature. She barely leaves his side, unless someone else is there to sit with him, just in case he has a seizure. She does all the house work now and all the cooking. She is Ed's primary caregiver and I feel she is doing a most excellent job of it! She is in her 70's after all.

Mending Fences

2009-04-12T17:36:00.000-07:00

The same night I wrote my last post regarding Ed's great improvements, he suffered two terrible seizures within 10 minutes of each other. My mom was terribly frightened and called first my brother, whom she didn't reach, then a neighbor, who would have to finish his bath before he could come over, and then me. Finally, the neighbor and my brother arrived and were able to put him to bed.

Ed's seizures scared me too. My mom said they were longer and harder then previous ones. Perhaps as hard as the first two he had. After seizures, particularly hard ones, his strength is zapped and it takes time and work to get back to where he was physically and sometimes mentally.

We blame the seizures on the fact that his dosage of steroids were reduced. We immediately went back to the old dosage, as the oncologist had told us we could do, if the seizures came back or worsened. He's been five days without seizures now, and hoping and praying if or when he does have another one, it won't be as severe.

I saw my parents today. They both were in good spirits. The amazing thing is that my step dad has these setbacks, and yet his spirits are still high. He is pleasant and doesn't seem discouraged.
I think as long as my dad can help my mom get himself in and out of the bed, into and out of the wheelchair, help with basics such as toileting and eating and bathing, her spirits will stay up.

Today is Easter. Going to church today and hearing the message reminds me that we will all die one day, be it quick, be it slow. But the Bible promises we will rise again, as the Son of God did. And we will be healed and joyful and renewed. I thank God for this promise for Ed, and for myself, and all those I love and hold dear.

Mending fences is hard to do. My step dad has a major broken fence. His relationship with his first born son, Tony. To make a very, very, long story short, Ed lost contact with his son from his first marriage when Tony was about six years old. Ed, my mama, and Tony's mother could not come to any agreement about child support and visitation. I don't know alot of the details because I was just a child myself when all this came about, but I know my step dad went to jail for about six months for non-child support. In my heart, I know that it was not because he didn't want to support his son, but because he couldn't support his son and please my mama both. I am sure to keep the peace and his sanity, he had to do what he had to do. And so a young boy grew up without his biological dad and probably with a heart full of confusion, resentment and bitterness.

It is very hard to describe the volatile time during the first years of my momma's and Ed's marriage. For a long time, I thought 'her' name was a curse word. When her name was mentioned there was a fight and it was loud and scary and sometimes lasted for days with lots of screaming, shouting, cursing and upheavals. All I know is that after Ed came home from his stint in jail, our lives calmed down, we stopped moving every few months, and we were more 'normal' than any time I can remember. Tony did come to visit just a few times after Ed's jail time, but I guess Ed and his ex finally came to a point where it all just ended, sad to say.

Tony is 41 now. He has an illness of his own, and I don't know those details. Me and my younger brother and mom have questioned if we should contact Tony and let him know about Ed's illness, but we never knew, really, how to approach him or how he would respond, or how my step dad would respond. We didn't want Tony to lash out in anger and hurt Ed. We finally asked Ed did he want us to call Tony, but I think he was afraid too, of how Tony would respond, and/or how contacting him might make life more difficult for either of them. I am sure he was afraid how my mom would take it.

Someone, I am not sure who, told Tony about Ed. Tonight, he dropped by, unannounced, for a visit. My mom didn't recognize him, but Ed, laying in the next room on his bed, recognized his voice, even though as far as I know they have not seen or talked to each other for probably twenty years or so. (But I have learned since the original writing of this blog entry, he had some very limited, sporadic contact. I am thinking when Ed's Dad died some twenty-odd years ago.) Tony came by once when he his daughter was a baby...probably hoping he could form a bond with his dad through her. It didn't happen. Another time, just a few years ago, he came by to ask for help getting his mother a tomb stone. Ed wasn't home during that last visit from Tony, and didn't make an effort to contact Tony as far as I know.

According to my mom, the visit went very well. Now that Tony's mother is passed away, I think Ed and my mom can both relax and let him be a part of their lives. I think he needs to know his dad, even if it's at this late date; when they are both ill. I hope they can have some sort of relationship, even if it's strange at first, and awkward. Maybe they mend the fence. He said he will stop by and visit again soon. I hope he does.

Looking up!

2009-04-07T15:21:00.001-07:00

Ed had a couple of bad weeks in March, but the week following his birthday, things started looking up!

First of all, the first round of chemo began flushing from his body, I suppose. He began using his right arm again, even exercising it with the one pound weights I gave him on his birthday. He also began exercising his legs; Mama lifts and bends them and moves them all about, and he started sitting on the edge of the bed and practicing pulling up with his walker, standing for a few seconds and sitting back down.

His appetite came back, full force! He has been eating four biscuits at one sitting a lot of mornings. They are usually stuffed with sausage and/or egg, and sometimes bacon. Some mornings he just wants toast. He drinks about four Ensure shakes per day, alternating between vanilla, chocolate and strawberry flavors. He also drinks several glasses of water, tea, milk or Gatorade per day.

The fungus (or Thrush as some folks are calling it!) has pretty much cleared up due to taking an anti fungal medication and using 'Magic Mouthwash'. (If you have never heard of Magic Mouthwash...it is a concoction of about 7 different medications including antibiotics, numbing agents, benedryl, an anti fungal agent, Maalox, anti inflammatory med and coating agents).

At his last check up with the oncologist, Dr Splichal, on Friday, April 3, Ed got a better report than his previous visit. He had gained 1.6 lbs back, was able to help himself in and out of the car and into the wheelchair, and no longer had signs of dehydration. His red and white blood counts were perfect, as were his platelets.

Dr. Splichal did indeed have a better attitude this visit, and a more hopeful outlook. He stated that he had been doing research on GBM (glioblastoma multiforme)...watching educational DVDs and learning things he had not known about the disease before. He said he had consulted a doctor that had a lot of experience with GBM (maybe he said the guy who had made the training tapes????) and one important thing he learned from him is that the MRI he took two weeks right after Ed completed radiation and chemo probably gave him a false reading.

I remember Dr. Splichal telling Ed (and us) at that time that even though he had just finished radiation and chemo (Part 1), that the tumor had survived and had grown to about 1.5 inches (this after the neurosurgeon had cut out the tumor in November...even though 'fingers' were left inside the brain). At that time, I couldn't believe it. But I'm not a doctor.

Now Dr. Splichal has learned, and shared with us, that an MRI taken that soon after radiation and chemo therapy, will show a very large amount of DEAD tissue!!!!!!! The advising doctor told him that it is very possible that the tumor has not grown to that extend at all, but that he had been viewing dead tissue! He advised Dr. Splichal to take another MRI a few weeks after Round 2 of Chemo Part II, which will begin Monday, April 13. He feels like Dr. Splichal will get a better and more informed picture at that time. So we are looking at an MRI sometime during the first week or so of May. Originally, the plan was to get an MRI after Round 3 of Chemo Part II, so this is a little sooner.

Ed's speech comes and goes. Some days, he speaks more clearly and forms really good thoughts and seems clear headed and unaffected by the tumor as far as being able to think clearly and make decisions and conversation. Other days it seems the right side of his mouth won't cooperate, it hangs slack and/or just won't move with the left side of his mouth, and it seems these days he thinks a little slower and has a tendency to repeat back some of what is said to him.

He is more able to feed himself again, especially things that can be picked up without a fork or spoon, and he is able to hold his sipper cup. (Walmart sells a plastic sipper glass, that has a built in sipper-straw that runs along one side up the length of the glass, with a large opening at top which accommodates ice and an easy on and off top - for $1.00! and it doesn't look like a kids only cup).

He loves to watch Westerns, and you might find him watching one any day of the week. He is spending more time up and about and taking less naps.

B2 and helpers built two ramps to accomadate Ed's chair. One takes him from the house and down one (half) step down to the front porch. Now, Mama can take him out onto the porch to get fresh air, sunshine, and a change of scenary. The second ramp goes from the front door to the ground so that Ed can go outside and easily be taken to the car.

He went for exactly two weeks seizure free, and the one he did have was very mild and mostly confined to tingling and burning in the right leg. This is a true blessing!

One morning, my mom went outside to feed the cats and dog and when she came back inside Ed was sitting in his chair, not in the bed where she had left him. She asked him how did he get into that chair, and he said 'I did it'! That was amazing considering the week before he could barely lift his right arm.

Medication changes in the past two weeks include reducing his heparin shot to 80mg (from 125mg) which means he only gets one injection per morning now, he was put on Coumadin to further assist with the blood clots, and his steroid dosage was brought down another 4mg! He is taking only 2 steroid tabs a day now, from 4 in the beginning! That is good news because steroids are good for reducing swelling and helping in other areas, but it causes muscle weakness! He was also taken off Zantac and put on Prilosec OTC, one caplet a day.

Also, as a side note, Ed voluntarily stopped taking some meds (at my urging and advise), ones I didn't think he needed to be taking. One, the tabs he was taking for hiccups. I told him if he'd stop taking it, he could always start taking it again if the hiccups started back up. I was really glad he stopped it because I read that it is a mind altering drug that mental patients are sometimes given. The other one was an anti-nausea pill taken that was not taken in conjunction with nausea. Again, I told him if he started having nausea again, he could always start it again. These drugs were 'as needed' drugs and right after surgery he did need them on a daily basis. But since he has stopped them, he doesn't need them!

One drug he has stopped using is his Advair for his emphysema. I totally disagree with him not taking it, but it's a battle I am willing to lose as long as his breathing seems okay. I am wondering if he's stopped taking it because of cost. I am going to look into seeing if it is offered under a patient assistance program at low or no cost, to see if that would encourage him to start using it again.

One last note, B2's girlfriend found out about a news release concerning an existing drug used for other types of cancers, but is now being approved for use with GBM patients! It is not a cure, but another avenue to try in improving the life of brain tumor patients...increasing time and quality of life for the patient! (called Avastin)

Praise God! He is answering our prayers in that Ed's life seems to have calmed down some, everyone seems to be handling all of this better, God is being gentle in that the chemo doesn't make him sick, he's been regaining some strength and appetite, he continues to have such a positive outlook and peaceful manner about him, his doctors are researching his disease in order to help him more, drug companies have accepted him for their special programs in getting low or no cost medications, and new medications are on the horizon for his possible use in the future! God is good - all the time!

Living with Brain Cancer

2009-03-28T19:19:00.000-07:00

Ed enjoys hearing gospel music sang by friends.

Ed and good friend Debbie.

Ed lays on bed with his cat, LongLegs.

Me and Ed, Ed holding his prayer blanket, a gift from my church.

Ed, me, and Mama...on my birthday.

Ed finished his first week of Round II chemo.  He takes a strong dose of oral Temodar for five nights in a row, and then he will take a 23 day break, and then take another dose for five days. This will continue for 6 months.

The chemo did not make him sick at all. It did affect his strength and appetite. He was very weak on the right side of his body and though he never stopped eating, he ate less than normal.

Ed is completely wheel chair and bed bound now. He can not stand unassisted. He spends his time in his wheel chair or his bed.

My mother, who is 72 years old, is the primary caregiver. She is with him 24 hours a day, 7 days a week. She has never been a nurturer or 'caregiver', but she is doing well with his care.

Ed can help a little bit, as far as pulling up and getting into his chair. But you cannot take your hands off him or he will tumble to the floor.

Neither one of them agree to having hospice come in at this time.

It was discovered a couple of weeks ago that Ed has a blood clot in his right leg - calf area I believe.  He takes a heparin shot every day, administered by my sister in law or aunt.

We had a big birthday bash for Ed last weekend, even though his birthday is this weekend. Thank the Lord we had it last weekend, for this weekend it is pouring down rain and we have tornado watches!

Ed had a regular visit with his oncologist this week and he didn't get a good report. While he was there the doctor ordered him to have two bags of fluids as he was dehydrated. The doctor found Ed to have a bad fungus in his mouth and possibly his throat. He said Ed had lost 7 lbs. He said Ed had lost a lot of ground since his last visit two weeks ago.

This doctor visit upset my mother terribly, for he talked about Ed dieing and losing his battle, in front of Ed. My mom said this upset Ed and she feels like he doesn't need to hear all the talk about death and dieing. The doctor wants to see Ed next Friday, and stated he would talk to him about ending chemo treatment.

However, Ed, my mom and younger brother all agree if the chemo doesn't make Ed nauseated and or vomiting, why not take it, just in case??? After reading some blogs and web pages from people who have or had (meaning they have since died) brain tumors of the same type, I agree with them.

I am going to ask Ed's oncologist to please try to be more upbeat, more positive, and more encouraging on his next visit. I agree with my mom that all the doom and gloom talk is devastating to my dad. I am not asking him to lie or tell untruths, but to be positive. My mom said she wanted to tell Dr. Splichal that there is more ways than one to be healed from cancer. She said that faith in God can heal also. She is right.

Today, when I visited Ed, on his 63rd birthday, he seemed happy, pain free, and at peace. He smiled when I came into the room, and my daughter and her husband, and my aunt and cousin arrived to visit. He cried when a long ago friend visited. He did very well being assisted into his chair and sitting at the kitchen table to have lunch. His tongue, though still affected by the fungus, appears to be getting well. His leg and ankle are no longer swollen. I could understand a lot of what he said today, and he seemed less confused.

I decided today I am going to stop treating Ed like he is dieing, and start helping him live. He may only have a day, a week, a month...but why not help him live with love, peace, comfort and happiness?

Friends and family continue to visit. They bring laughs, and sometimes tears. But the initial shock of the news of brain tumors and cancer is all beginning to wear off, and people are beginning to realize that Ed likes having people come and act 'normal'.  He likes to look at pictures and hear stories of normal life that is still going on in the world.

He continues to take lots of medications for seizures, headaches, high blood pressure, cholesterol, steroids, stool softeners, puffers for breathing,  heparin injections for the blood clot and the occasional pain pill when Tylenol is not enough,  cough medicine and now add to that 'magic mouthwash' for the fungus in his mouth.

He spends lots of time in bed, but his cat climbs up there and sleeps with him, sometimes laying right on his chest.

We (Ed, mama, me, my brothers, rest of the family and friends), don't cry as much as we did.

Ed has had several visits from ministers and expressed that he believes in Jesus Christ and God and knows where he will go when he leaves this world.

Last Saturday night, he had the first seizure he'd had in eight days. Now it has been 7 days since that one. I don't know why the seizures have become less frequent, but I count that as one of many blessings.

March 18, 2009

2009-03-18T18:29:00.000-07:00

Ed had his second does of Chemo-Part II last night and came through it okay again. No nausea, no pain, but weakness in abundance.

He ate a bit better today. He tries to help get himself up out of bed and into his wheelchair.

He and Mama had lots of visitors again today. They like the company, but it can also be tiring. Mama needs the help and company, so they don't complain. She said every time they try to take a nap, someone drops by. It's okay, she said.

I am thanking God for his gentleness today.

Rainbows and Butterflies

2009-03-17T19:19:00.000-07:00

Ed did very well his first night of Chemo-Part II. He did not get nauseated, but was probably very restless as Mama said he woke her five times during the night...to urinate. No vomiting or nausea, but he was very weak this morning.

He is taking injections at home for his blood clot, thank God for my sister-in-law who is able to give the shots! Me, I hate needles! He said they smarted this morning!

I saw him at dinner time and he was smiling alot. Very weak, but great spirits and peaceful. Mama and B2 gave him a shower and he was 'shiny as a new penny' - my brother's words.

As the song goes...It's not always rainbows and butterflies...but we'll take what smiles and laughter we can get, when we can get it, and while we can get it.

We purchased a second hand hospital bed today and when I left their house tonight, Ed was learning how to use the controls...raising his legs, letting them down, raising his head, letting it down, till he found a happy medium.

Sometimes and it's thunderstorms and caterpillars. But today it's rainbows and butterflies.

Chemo - Part 2

2009-03-17T04:14:00.000-07:00

Ed has decided to take chemo a second time around. 375mg of Temodar each night for five nights, and then off the rest of the month. Plus a strong anti-nausea medication.

He wants to do this, and we will support him and help him as much as we can.

Please pray for him.

A Long Day

2009-03-13T19:49:00.001-07:00

The day began with a meeting at my Mama and Dad's house, with two reps from Agape Hospice, at 8:00 am.

Before the two ladies arrived, my brother (B2) and I witnessed our Dad have a seizure for the first time. It was his 32nd seizure since November 2008. We both cried, which made Ed cry. We couldn't help it though. B2 sat right in front of him and held his face and I stood behind his chair and held his shoulders and Mama held his head. It only lasted a minute or two and was not a violent shaking and jerking. He did not lose consciousness. His head made small back and forth jerking motions. I cannot begin to imagine what this feels like. I think he is humiliated for anyone to witness his seizures. His body was wracked with sobs and I became nauseated with my concern and sadness for him.

After his seizure and tears subsided, we all finished our breakfast. You can only try to go back to some normalcy.

The meeting went as well as I guess it could. We all cried a little bit, and Ed had to leave the room once to regain his composure.

The reps from hospice explained their purpose...to help a person live the rest of their life in peace, comfort and without pain. They said they will help him stay at home as long as he possibly can, quite possible until he dies.

But first he must decide if he is ready to stop all treatments regarding his brain cancer. Before hospice comes in, you have to have reached the decision that you don't want to try any other 'extreme' measures to extend your life.

How sad to sit in the room with your sick parent and discuss altering the home to accommodate wheel chairs and hospital beds, discuss what the service will assist with (such as bathing, toiletry, dressing), and then to discuss how that person's final days will be handled.

The worst was the part when they said 'if the patients family cannot take it anymore, he can go to a facility'. They were as kind as they could be, and only answering questions, but how difficult to discuss the last days and pain management.

Later in the day, B2 took Ed to Athens Hospital to have an ultra sound on his leg. It was confirmed that he had a blood clot. At first, they were going to admit him. But an hour later my brother text me and said to stay home, that they were letting him go home.

The next couple of days we will take him to Outpatient Services to get injections in his leg (clot dissolving agents?) and have it rechecked on Monday. At 9:20pm, B2 and Ed were headed home.

I thank God I have a brother who shares in taking care of our parents. My other brother and his wife help also. Everyone helps in their own way. I hope I am helping enough.

Another Tearful Day

2009-03-12T18:37:00.000-07:00

Today it was determined Ed has a kidney infection. He rode with Mama and Aunt J to Jefferson for mama's doctor visit. I asked that he get a urinalysis while he was there because there were indications he may have an infection.

Tomorrow morning, (Friday), Ed, Mama and me meet with two ladies from Agape Hospice of NE Georgia to discuss options for the near the future. We have so many questions.

Tomorrow will be another tearful day.

The Journey Takes a New Turn

2009-03-11T18:34:00.000-07:00

Ed received bad news Monday and, again today.

Monday, I went with him to the oncologist for a follow-up visit. His blood work was excellent. Meaning the radiation and chemo he just completed did not wreak havoc with his red blood cells, white blood cells, or platelets.

He had gained 8 pounds since his last visit. His blood pressure was 118/70.

Dr. Splichael gave us the news that the tumor, what had remained after surgery, had survived the radiation and chemo. It was 1-3/4" in size. The center of it was killed, but the outer layers was alive and thriving.

We arranged to have more Temodar (chemo) tablets delivered. He would take an extra strong dose for 5 days, and then be off for the remainder of the month. He would do this for six months. At three months he would have a new MRI done to see what progress was being made.

Dr. Splichael cautiously mentioned if that didn't work, he could try a IV administered chemo, and if that didn't work, he would do whatever he could to make Ed comfortable.

When we got home from that appointment, he, Mama, and myself, all cried. I wasn't sure why. I guess because Dr. 'S' said he may not ever improve on his speech. Or because the tumor was still there. I don't know.

Today, Ed had a follow-up visit with Dr. Walpert, the neurosurgeon who operated on the tumor in the beginning. She really dropped the bomb.

She said his brain cancer tumor is extremely aggressive. She told him that it would be the cause of his death. She told him she could do surgery again, but 99.99% chance was, it would come back and be just as aggressive. She told him it was his choice to continue with the next round of chemo, but more than likely, the outcome would not be any different.

Dr. Walpert told Ed she could not tell him when he will die, that that is God's decision and God's will be done. However, she said she would guess that he has six months to live. She said she will help with finding him Hospice care.

Ed cried.

When he and my sister-in-law got outside to the car, he cried again.

He cried with my mama when he got home after the appointment.

He has cried with everyone who come to visit today.

It is not that it's a shock that the cancer is still there, or that he will die from it. It's just that we thought he might have more time. And too, I think we were expecting a miracle.

Because you cannot imagine why God would let this happen to such a gentle, loving, loved person.

We are not meant to understand everything on this earth or in our lives. God has a plan and we won't always agree with it, understand it, or want to be part of it. But God's will be done.

All I could tell him tonight when I visited, holding him and crying, is 'I'm sorry you have to go through this. But we will go through it with you. We will be with you all the way, till it's gone'.

He asked me not to cry, and I told him I couldn't promise him that.

Please pray for Ed, that God will see fit to keep him comfortable, to make us able to take care of him and help him through this part of his journey, that God will be gentle with him, as he has always been gentle to all those he meets.

Computer Problems!

2009-03-11T04:28:00.000-07:00

I have been having computer (and time) problems, but hope to update you on Ed's progress tonight! Have a great day!

A Bit Stronger

2009-02-25T16:30:00.000-08:00

Ed has been radiation-free for five days, and he is already showing signs of physical improvement! He told me today he is getting his strength back in walking and is now able to grasp a glass to drink from again. One improvement very evident from speaking with him on the phone today - his speech is improving! He told me he has not had any seizures this week, that is awesome!

I spoke with his oncologist's nurse yesterday and she reconfirmed what we were originally told about Ed's treatment plan; he will have a second round of chemo. He will take a very strong dose of Temodar once a day for five days, and then be off for three weeks. The strong dose of chemo may make him very nauseated, but he has a strong anti-nausea drug, Anzemet, to counteract the nausea. We are hoping he does well with this treatment, and not cause him to lose a lot of weight.

I will see Ed this weekend and am very curious to see how he looks. I wonder if his hair is beginning to come back. Last weekend he had his 'cap' of hair on the crown and back of his head, but hairless on either side of his head, except for a tiny bit of 'baby fuzz'. I will take pictures!

Graduation

2009-02-21T17:04:00.000-08:00

Picture 1). My brother shaved his head to match Ed's head...but it's not quite as short as Ed's!

Ed 'graduated' from radiation yesterday. He completed six weeks of non-stop radiation.

The effects of radiation and chemo have been:

*After the second week of radiation, Ed experienced fatigue, weakness and sleeplessness.
*After the third week, his fatigue and weakness worsened. His speech become more slurred.
*The fourth week of radiation, Ed's hair begin to fall out. You could gently grasp the strands on the side of his head, and they would pull out with ease. That is when he decided to shave the rest of his hair off.
*At the beginning of the fifth week, Ed was so weak he could barely grasp a glass of water, he needed to brace himself against walls to walk, he was napping frequently, his head looked sunburned, and his speech was so bad now you could only understand a few words.

The effects of chemo and other meds:

*The steroids cause him to be hungry. He eats often. He has gained about 10 pounds and has gone up a pants size and for the first time (as far as I know) wore sweat pants in public.
* His sense of taste has changed. The only drink he enjoys now is coffee. He drinks up to 6, 7, and 8 cups of coffee a day. We talked him into switching to decaf, because we were afraid he the caffeine may be setting off the seizures.
*The steroids also make the muscles in his legs and shoulders weak.
*He takes medication to counter-react the hiccups that steroids cause.
* At times, when adjusting to different medications, or different dosages of medications, he was easily confused.
* Since the chemo pill he was taking during radiation was low-dose, and he took a nausea medication 'just in case', he did not experience nausea or vomiting, thank God!

Doctor reports:
*Each time Ed's blood was tested he got very good results. In fact, all the doctors report his blood work comes back excellent. They test for Dilantin levels, (he takes Dilantin, in combination with Lyrica to control the seizures), red blood cell level, white blood cell level, and platelet level. And probably more that I don't know about.
*His lungs have remained clear according to several chest x-rays.
*Beginning the fourth week of radiation and chemo, his oncologist expressed great concern that Ed take precautions not to fall. (Are his bones weakened by the radiation, the chemo? I know steroids weakened the muscles...also the whole concoction of meds he takes probably make him feel 'drunk'.)
*All Ed's doctors say that for what he has been through...brain surgery, chemo, radiation...that he is doing excellent.
*The final week of radiation, Ed saw the neurosurgeon who did the brain surgery, and she confirmed that Ed has a titanium plate in his head. We didn't know that before!

Ed continues to have seizures. He still gets an 'aura' before they begin, so he has been able to sit or lay down before they occur, so far. They last about three minutes at the longest, and involve burning and tingling in the face, neck, shoulder, down his right arm and side, and down the right leg. I am not sure what his 'aura' is, it may be the tingling, quivering sensation he gets in his tongue, that he has described to us.

Now that Ed has graduated from radiation and chemo, we wait for the next instructions. Originally, he was told he would start Round 2 of chemo after the initial six weeks of 'low dose chemo'. Round 2 would involve a tripled or quadrupled dosage of Temodar, the drug designed specifically for brain cancer patients. We don't know how soon Round 2 will begin.

He has several rounds of doctor's visits coming up, along with follow-up x-rays, scans and blood work. All designed to determine how well the treatment has done in the job of eliminating the cancer, and to determine if any damage was done to his blood, bones and surrounding tissues.

Ed has done extremely well with his treatments, thus far. I credit that to the several things; 1) the removal of most of the tumor, 2) the remarkable advances in drugs available today, 3) the awesome care he has received from doctors, mama, family and friends, 4) his upbeat attitude and cooperation during this whole ordeal, 5) all the prayers which have lifted him, surrounded him, and filled him, 6) and God's graciousness.

Today, my Aunt J and I went to work at our little part time job, and our customer and her husband joined hands with us to pray for Ed. They prayed for Ed to be healed. They believe, like we do, that God is able to heal, that he wants to heal, that he will heal, and that he does heal.

Please continue to pray for Ed. He is a good and gentle soul. He is so accepting of all that is happening to him. How wonderful if we could keep him here with us a while longer; cancer free, pain free, and happy.

I do believe God is listening to my prayers, and yours.

If you want to send Edward a 'graduation' card, I will give his address to those who ask for it. Email me at chapster13@yahoo.com.

Picture 2) In this picture you see how the radiation has blistered the left side of his head, where the rays are aimed, nearly coming over to the eye and face area.

Tuesday, Feb 10, 2009

2009-02-10T04:07:00.000-08:00

Ed is doing good this week. So far, no seizures that I know of. He is on his fourth week of radiation and chemo. This week and next week, and radiation will be over. Then his next, stronger, round of chemo will begin.

I will probably be taking a break from writing until after the wedding this Saturday. But look for news on Ed's Journey soon!

Baldy

2009-02-05T17:54:00.001-08:00

Ed is bald now. His hair was coming out in big patches (the results of radiation), and so he had B2 shave his head all over. I didn't know this when I went over to visit Sunday, and so when he walked into the room I was shocked! But you quickly get used to his 'new do', and also, we know it will all grow back!

Pic #1. You can really see his scar now that the hair is out of the way! It has really healed well, but you can still see the little 'railroad tracks'.

Pic #2. It is a shock to see him without hair for the first time ever! Plus the fact he has gained weight (thanks to steroids) and also, he won't wear his dentures. He has a fear of swallowing them during a seizure! (I don't think that is humanly possible, but it is a fear he has.)

New Pics Soon!

2009-02-04T04:14:00.000-08:00

Hopefully, tonight, I will have new pics of Ed loaded, showing his new shiny, slick, white head. Time is tight with us working on the wedding and all, but I hope to get those pics up tonight!

Radiation and Chemo

2009-02-02T17:25:00.001-08:00

(Ed getting ready for radiation...note the 'donut' he holds on to.)

Because Ed does not have any type of insurance, we wondered how in the world he could afford chemo and radiation.

Dr. Splichal and the Cancer Care Center (in Athens) quickly worked out a plan for him as far as some of his medications and the radiation. He would pay for some of the less expensive medicines, pay a nominal fee each week for his care, and receive some samples of some of his medications.

The big hurdle was the chemo pill, Temodar, and the nausea medication needed to take along with it.

Temodar is astronomically expensive. It can cost up to $10,000.00 for a month's worth of treatment. Temodar works by slowing down rapid cell growth characterized by cancer cells. The most common side effects are nausea and vomiting. Other side effects are headaches, hair loss, loss of appetite, tiredness and constipation. Blood tests must be taken every other week to determine how the body is tolerating the chemicals. Thanks to the Schering Corporation's COMMITMENT TO CARE® program, Ed receives this drug at no charge. Praise God! We prayed and prayed about how he (we) could afford this drug, and God answered.

Next, he needed the drug Anzemet, which is highly effective, very strong anti-nausea drug. It too, is very, very expensive. The side effects of Anzemet are headache, tiredness, and diarrhea. (Hmmm, an answer to the constipation caused by Temodar???). But it keeps the cancer patient who is undergoing chemo treatment from having nausea and vomiting. What's a little headache and tiredness, right? It was our understanding that this drug costs roughly $2,000.00 per month. Once again, we prayed. And God answered our prayers. Ed has received samples of this drug, and hopefully will be approved soon to receive assistance from that drug manufacturer.

Say what you will about drug manufacturers. But right now I can only praise the makers of these two drugs.

Finally, with pills in hand, Ed was given the green light to start chemo and radiation! It had been 33 days since his surgery to remove the tumor. We were getting antsy. After I did some research though, I saw that typically brain cancer patients wait up to eight to ten weeks before starting radiation, to allow the brain to heal. But now, his treatments were to begin, and we all sighed a little sigh of relief. Now, something would be done!

(These are the monitors the radiation technicians watch while Ed is under the radiation machine. Ed describes it as being inside an 'electrical storm'. He said it pops and crackles all aroud his head.)