Quantity vs. Quality

I read an article in the April/May 2012 edition of the magazine Neurology Now titled Antiepileptic Drugs for Treating Brain Tumors? by Andrea King Collier (pg. 13-15).

According to the article, a study done in Switzerland determined that Glioblastoma patients who took valproic acid (a common anti-epileptic drug) while taking chemo treatments fared better than patients who took other types of epileptic drugs or who did not take any type of epileptic drug at all.

I found this article very interesting because Ed, my step dad, took the drug Lyrica and Dilantin to control his seizures caused by his glioblastoma (brain tumor). To the best of my knowledge, Lyrica nor Dilantin do not contain valproic acid. I wonder, if he had taken valporic acid to help control his seizures, would he have lived a few months longer?

This article states that the average survival rate for glioblastoma patients is 15 months.  Ed found out he had the brain tumor in November, 2008. He lived till April, 2010. So he lived about 16 months after diagnosis. Did his anti-seizure medications help him live longer? 

I don't know the answer to any of my questions. But I know that even though he lived a bit longer than expected, his last month of life was not a high quality of living. His last month consisted of him being totally bed-ridden, totally depending on others for his toileting, eating, bathing, everything. I think he had his mind till the end, but he was trapped in a body that didn't respond to his needs or his wants. He couldn't sit up. He couldn't feed himself. He had to have a catheter and wear depends, and someone else had to change him, bathe and dress him.

If you or your loved one has Glioblastoma, I promise you, you will do whatever you can to make your symptoms or your loved one's symptoms less painful, and more endurable. Ed had seizures, so of course he was prescribed anti-seizure medications. Had we known this other drug was available and might extend his life, we more than likely would have asked for it. It may have helped him live a few more weeks or months longer. But I am not sure that would have been as ideal as it sounds.

'"If you are talking about a better quality of life for the time you have versus using a therapy that may prolong life for a month but decrease the quality of life, most patients choose quality of life, " Dr. Taylor says.' , states the article in Neurology Now. I must say, if I could live a month longer with increased mobility, clarity of mind, ability to communicate, etc., I believe it would be well worth taking the drug. Or even if my quality of life stayed the same with the drug while causing me to live longer, I would be happy with that. But if living a few weeks longer as a person in pain or frustration, it may not be worth it.

It's hard to know what I, or anyone, would choose in that situation. But at least the drug is out there, and the option is there if one chooses to take it. Perhaps with more research and testing, doctors will know more about the effects of valporic acid on the survival of Glioblastoma patients and will be able to offer that drug as another way to extend life, and hopefully improve quality of life.

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. 

Chemo Treatment No. 10

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

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

Chemo went well and uneventful as well.

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

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

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

One can believe and have hope.

Chemo Treatment No. 9

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

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

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

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

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

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

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

Chemo Treatment No. 8 and Sad News

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Fast Forward

Fast forward from Christmas...a lot has happened with Ed and his health matters since Christmas. Here is the quickie version to bring you up to speed with what is going on in his life.

At Christmas time, Ed seemed relatively healthy and on his way to getting better. He had not had anymore seizures since his surgery. He was taken seizure medications, and various other types of meds to control high blood pressure, cholesterol, wheezing (from emphysema), pain pills for headaches (which he rarely took), hiccup controlling meds, steroids to reduce brain swelling. He was walking, talking, laughing, eating, and gaining weight. He had no speech problems and no memory loss.

All that changed on New Years Eve morning.

I was on my way to work at 7:30 a.m. when I got the call from mama. She said Ed had had another seizure. I detoured away from work and headed straight to their house.

I called his oncologist in route to their house and he suggested we go to the emergency room to make sure everything was ok. When I got to Mama and Ed's house, he was calm and seemed okay, other than being tired. We went to the ER at Athens Regional Medical and he was taken right in. The doctors and nurses swooped in and quickly accessed the situation, and started giving him anti-seizure meds and glucose. They did a brain scan and determined that everything looked great, even better than the scans that were taken right after his surgery. Several times while we were there, he had the beginnings of more seizures, but they stopped as soon as they started. The meds made him sleepy. He dozed on and off.

Mama and Aunt J came to the hospital around noon, and soon after that they released Ed to go home. They upped his Dilantin, which prevents seizures.

This was seizure #3. It wasn't as 'hard' as the previous two seizures. But it still involved much jerking, some drooling, loss of speech. But he didn't lose consciousness. Also, something new, he had an aura. An aura is a forewarning. In other words, he knew he was about to have a seizure. This time, he was able to get himself seated in his recliner where he was less likely to fall and hurt himself. The first two times he lost consciousness, struggled to breath and had severe jerking and drooling and making strange noises. This wasn't as 'hard'.

Regardless of the severity of the seizures, they are still scary to him. It is still disconcerting. Still worrisome. Still exhausting.

A follow-up visit to Dr. Splichal, his oncologist, it was explained to us that the reason Ed was still having seizures is because likely their is still stuff going on in that area of the brain, even though the tumor has been removed. The brain is still recovering from the shock of the surgery. He had been weaned off steroids, but perhaps the brain was swelling again. So he started back on the steroids.

Dr. Splical explained that the seizures technically won't hurt him, if they are short, if he is not losing unconsciousness, and if the jerking is not so violent. It is hard to comprehend that they are not hurting him in some way. And they scare him. Seizures are not a normal part of life.

Since the episode on New Years' Eve morning, Ed has suffered thirteen more seizures. The next episode was on January 14. He had three that day. That's two weeks after New Years! He another 4 days later. It's going now where he will go a few days seizure free, then they will come back in multiples. As of today, he has not had one for two days. But on Friday, Jan 30, he had three, maybe four.

I say maybe four, because the seizures have 'weakened' for lack of a better word. Since the New Year's Eve episode, his seizures have changed. They now start as a tongue twitching, and then a burning and tingling sensation begins in his right cheek. (His seizures affect the right side of his body because his brain cancer is in the left part of the brain). The burning and tingling then makes it way down his neck, down his right shoulder, arm and hand, then down his side, and down his leg to his foot. He doesn't lose consciousness. He still can't speak, but he can listen and follow directions. He has auras, so he pats mama's arm and she knows to help him to his chair or the bed. He sits and waits it out. He sometimes has drooling, some head jerking, sometimes his eyes open and close in rapid succession. The first few times the vision in his right eye went away, but came back after the seizure. So, I say maybe four, because he says he had three that afternoon, but Mama only counted three. Then he had another that evening.

So the seizures, though they have not gone away completely, they have lessened. They have weakened. This is a good thing. But it won't be GREAT until they are completely gone away.

The Second Siezure

I had just walked into the office on the eve of Thanksgiving when I received a call from my brother again. He told me our dad was on his way to the emergency room again. He had had a second 'episode'.

According to my mom, she and Ed were making breakfast together. She had turned away to do something and Ed was going to take the biscuits out of the oven. But when she turned to him, he wasn't there. She looked and he was sitting down at the kitchen table. She went over to him and said "Ed, what's wrong"? She put her hand on his shoulder and when she did she said he went into full on seizure, like before.

She said he was jerking so violently that he fell to the floor, hitting his head on the floor. She tried to call a neighbor with one hand and hold his head with the other. She felt like he couldn't breath because he was clenching his mouth so tightly. She first tried putting her fingers in his mouth but said he was biting down too hard, so she put a spoon in his mouth. She felt like that helped him breath. The neighbor called 9-1-1 and the paramedics arrived shortly. She or the friend called my brother, and he called me.

Mama said when the paramedics arrived the seizure was mostly over, and he was mostly conscious again when they loaded him into the ambulance. My brother went with Ed to the hospital and me and Momma followed shortly, even though it seemed like it took forever for her to get ready. My sister in law was there, and my aunt. Maybe more people, I can't remember.

By the time we got to the hospital, my brother told me that this time the hospital was listening to us that we felt like this was a seizure, not a heart attack. They had done a brain scan and saw a mass on his left temple.

This was truly the last thing we expected to hear. I think it was such a shock to all of us. Ed was sitting up in bed when we saw him. He seemed to be in shock or maybe he blocked out the news. He was so calm. We were too, at this point. We didn't know what to think or what to do. We had never dealt with seizures or 'masses' on the brain.

Not only was he calm, but very weak from the seizure. Yes, they finally agreed with us he was having seizures. Now we were getting somewhere. But not a place we wanted to go.