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.

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!

Happy New Year! (2010)

Happy New Year Blog Readers!

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

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

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

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

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

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

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

Christmas Gathering with Family - 2009

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

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

(Picture 1: Ed enjoying Christmas Dinner.)

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

(Pic 2. Ed and Momma)

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

(Pic 3. With the grandkids.)

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

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

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

(Pic 4. Me, Hubby and Ed.)

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

(Pic 5. Dirty Santa Gift Pile)


(Pic 6. Ed, Mama and Children)

Chemo Treatment No. 14

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

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

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

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

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

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

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

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

One Year Ago Today

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Chemo Treatment No. 12

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

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

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

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

Chemo Treatment No. 11

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

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

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

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

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

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

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

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

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


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

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

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

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


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