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.)

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. 

He keeps on tickin'...

...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...

...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

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!

Thanksgiving 2009

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!)

Chemo Treatment No. 11

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.

Chemo Treatment No. 3 (continued)

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.

His sense of humor is intact

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.

Rainbows and Butterflies

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.

A Long Day

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.

The Journey Takes a New Turn

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.