A Bit Stronger

Ed has been radiation-free for five days, and he is already showing signs of physical improvement! He told me today he is getting his strength back in walking and is now able to grasp a glass to drink from again. One improvement very evident from speaking with him on the phone today - his speech is improving! He told me he has not had any seizures this week, that is awesome!

I spoke with his oncologist's nurse yesterday and she reconfirmed what we were originally told about Ed's treatment plan; he will have a second round of chemo. He will take a very strong dose of Temodar once a day for five days, and then be off for three weeks. The strong dose of chemo may make him very nauseated, but he has a strong anti-nausea drug, Anzemet, to counteract the nausea. We are hoping he does well with this treatment, and not cause him to lose a lot of weight.

I will see Ed this weekend and am very curious to see how he looks. I wonder if his hair is beginning to come back. Last weekend he had his 'cap' of hair on the crown and back of his head, but hairless on either side of his head, except for a tiny bit of 'baby fuzz'. I will take pictures!

Graduation

Picture 1). My brother shaved his head to match Ed's head...but it's not quite as short as Ed's!


Ed 'graduated' from radiation yesterday. He completed six weeks of non-stop radiation.

The effects of radiation and chemo have been:

*After the second week of radiation, Ed experienced fatigue, weakness and sleeplessness.
*After the third week, his fatigue and weakness worsened. His speech become more slurred.
*The fourth week of radiation, Ed's hair begin to fall out. You could gently grasp the strands on the side of his head, and they would pull out with ease. That is when he decided to shave the rest of his hair off.
*At the beginning of the fifth week, Ed was so weak he could barely grasp a glass of water, he needed to brace himself against walls to walk, he was napping frequently, his head looked sunburned, and his speech was so bad now you could only understand a few words.

The effects of chemo and other meds:

*The steroids cause him to be hungry. He eats often. He has gained about 10 pounds and has gone up a pants size and for the first time (as far as I know) wore sweat pants in public.
* His sense of taste has changed. The only drink he enjoys now is coffee. He drinks up to 6, 7, and 8 cups of coffee a day. We talked him into switching to decaf, because we were afraid he the caffeine may be setting off the seizures.
*The steroids also make the muscles in his legs and shoulders weak.
*He takes medication to counter-react the hiccups that steroids cause.
* At times, when adjusting to different medications, or different dosages of medications, he was easily confused.
* Since the chemo pill he was taking during radiation was low-dose, and he took a nausea medication 'just in case', he did not experience nausea or vomiting, thank God!

Doctor reports:
*Each time Ed's blood was tested he got very good results. In fact, all the doctors report his blood work comes back excellent. They test for Dilantin levels, (he takes Dilantin, in combination with Lyrica to control the seizures), red blood cell level, white blood cell level, and platelet level. And probably more that I don't know about.
*His lungs have remained clear according to several chest x-rays.
*Beginning the fourth week of radiation and chemo, his oncologist expressed great concern that Ed take precautions not to fall. (Are his bones weakened by the radiation, the chemo? I know steroids weakened the muscles...also the whole concoction of meds he takes probably make him feel 'drunk'.)
*All Ed's doctors say that for what he has been through...brain surgery, chemo, radiation...that he is doing excellent.
*The final week of radiation, Ed saw the neurosurgeon who did the brain surgery, and she confirmed that Ed has a titanium plate in his head. We didn't know that before!

Ed continues to have seizures. He still gets an 'aura' before they begin, so he has been able to sit or lay down before they occur, so far. They last about three minutes at the longest, and involve burning and tingling in the face, neck, shoulder, down his right arm and side, and down the right leg. I am not sure what his 'aura' is, it may be the tingling, quivering sensation he gets in his tongue, that he has described to us.

Now that Ed has graduated from radiation and chemo, we wait for the next instructions. Originally, he was told he would start Round 2 of chemo after the initial six weeks of 'low dose chemo'. Round 2 would involve a tripled or quadrupled dosage of Temodar, the drug designed specifically for brain cancer patients. We don't know how soon Round 2 will begin.

He has several rounds of doctor's visits coming up, along with follow-up x-rays, scans and blood work. All designed to determine how well the treatment has done in the job of eliminating the cancer, and to determine if any damage was done to his blood, bones and surrounding tissues.

Ed has done extremely well with his treatments, thus far. I credit that to the several things; 1) the removal of most of the tumor, 2) the remarkable advances in drugs available today, 3) the awesome care he has received from doctors, mama, family and friends, 4) his upbeat attitude and cooperation during this whole ordeal, 5) all the prayers which have lifted him, surrounded him, and filled him, 6) and God's graciousness.

Today, my Aunt J and I went to work at our little part time job, and our customer and her husband joined hands with us to pray for Ed. They prayed for Ed to be healed. They believe, like we do, that God is able to heal, that he wants to heal, that he will heal, and that he does heal.

Please continue to pray for Ed. He is a good and gentle soul. He is so accepting of all that is happening to him. How wonderful if we could keep him here with us a while longer; cancer free, pain free, and happy.

I do believe God is listening to my prayers, and yours.

If you want to send Edward a 'graduation' card, I will give his address to those who ask for it. Email me at chapster13@yahoo.com.

Picture 2) In this picture you see how the radiation has blistered the left side of his head, where the rays are aimed, nearly coming over to the eye and face area.

Tuesday, Feb 10, 2009

Ed is doing good this week. So far, no seizures that I know of. He is on his fourth week of radiation and chemo. This week and next week, and radiation will be over. Then his next, stronger, round of chemo will begin.

I will probably be taking a break from writing until after the wedding this Saturday. But look for news on Ed's Journey soon!

Baldy

Ed is bald now. His hair was coming out in big patches (the results of radiation), and so he had B2 shave his head all over. I didn't know this when I went over to visit Sunday, and so when he walked into the room I was shocked! But you quickly get used to his 'new do', and also, we know it will all grow back!




Pic #1. You can really see his scar now that the hair is out of the way! It has really healed well, but you can still see the little 'railroad tracks'.


Pic #2. It is a shock to see him without hair for the first time ever! Plus the fact he has gained weight (thanks to steroids) and also, he won't wear his dentures. He has a fear of swallowing them during a seizure! (I don't think that is humanly possible, but it is a fear he has.)

New Pics Soon!

Hopefully, tonight, I will have new pics of Ed loaded, showing his new shiny, slick, white head. Time is tight with us working on the wedding and all, but I hope to get those pics up tonight!

Radiation and Chemo

(Ed getting ready for radiation...note the 'donut' he holds on to.)

Because Ed does not have any type of insurance, we wondered how in the world he could afford chemo and radiation.

Dr. Splichal and the Cancer Care Center (in Athens) quickly worked out a plan for him as far as some of his medications and the radiation. He would pay for some of the less expensive medicines, pay a nominal fee each week for his care, and receive some samples of some of his medications.

The big hurdle was the chemo pill, Temodar, and the nausea medication needed to take along with it.

Temodar is astronomically expensive. It can cost up to $10,000.00 for a month's worth of treatment. Temodar works by slowing down rapid cell growth characterized by cancer cells. The most common side effects are nausea and vomiting. Other side effects are headaches, hair loss, loss of appetite, tiredness and constipation. Blood tests must be taken every other week to determine how the body is tolerating the chemicals. Thanks to the Schering Corporation's COMMITMENT TO CARE® program, Ed receives this drug at no charge. Praise God! We prayed and prayed about how he (we) could afford this drug, and God answered.

Next, he needed the drug Anzemet, which is highly effective, very strong anti-nausea drug. It too, is very, very expensive. The side effects of Anzemet are headache, tiredness, and diarrhea. (Hmmm, an answer to the constipation caused by Temodar???). But it keeps the cancer patient who is undergoing chemo treatment from having nausea and vomiting. What's a little headache and tiredness, right? It was our understanding that this drug costs roughly $2,000.00 per month. Once again, we prayed. And God answered our prayers. Ed has received samples of this drug, and hopefully will be approved soon to receive assistance from that drug manufacturer.

Say what you will about drug manufacturers. But right now I can only praise the makers of these two drugs.

Finally, with pills in hand, Ed was given the green light to start chemo and radiation! It had been 33 days since his surgery to remove the tumor. We were getting antsy. After I did some research though, I saw that typically brain cancer patients wait up to eight to ten weeks before starting radiation, to allow the brain to heal. But now, his treatments were to begin, and we all sighed a little sigh of relief. Now, something would be done!

(These are the monitors the radiation technicians watch while Ed is under the radiation machine. Ed describes it as being inside an 'electrical storm'. He said it pops and crackles all aroud his head.)

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.