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.

Blood and Images

Ed had blood work done today and the greatly anticipated MRI of his brain. The blood work is routine...to check platelets, red and white blood cells, coumadin (blood thinner) levels and dilantin (seizure medication) levels. The MRI is the second one after surgery and should be very telling. Keep him in your prayers...ask God to continue being gentle with Ed, and that the MRI will show improvement...shrinking of the tumor. He continues to have seizures. They are usually spaced about two weeks apart, but the last one came sooner. But it wasn't as severe as the last two. My mom is doing a good job of taking care of Ed. I wish she would get out of the house some and take some breaks, but she won't leave him. The only break they get from each other is when Ed has doctor appointments or tests, like today. She won't go anymore because she gets angry with the doctors when they don't say Ed is improving, and she ends up being depressed. I will be taking off work all or most of Wednesday to take him to the neurosurgeon and the oncologist to get test results. We need all your prayers!

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.