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

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

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

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

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

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

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.

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.