Ed, What Were You Thankful For?

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)

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.

The End of the Journey

 

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

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

                (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

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.