Last June

Last June, (2009)...Ed was into his sixth month of treatment for brain cancer. On June 3rd, he had his first treatment with the drug Avastin and Irinotrecan. His blood work had come back good, his blood pressure normal, and he weighed 184 lbs. He was beginning to get over some of the side effects of radiation, and he was actually gaining some strength back, his hair was growing back, and all in all he just looked 'good'.

The month before he had received the news that the treatment of Temodar was not working; his tumor had grown. Notes from his treatment book indicates Dr. Splichal (oncologist) had told him he could start treatment on this drug which had been used for bladder and colon cancer...but had just been approved for GBMs. 

It seemed such a miracle, that Ed could received this drug because a) it had JUST been approved for GBM patients the month before, b) the drug manufacturer agreed to let Ed have the drug at reduced or no cost due to his not having insurance or private funding. 

Father's Day came. We all laughed and hugged and made merry. The future seemed to hold some promise. Looking back, you can reflect that it did hold promise...not of a cure. But of prolonging the life of a man who so wanted to live. 

                                                Edward and son Edward (Bo) in June, 2009.

Bad News, Good News...sort of.

(This picture was taken of Ed while at the oncologists office Wednesday, May 20, 2009. Waiting to see Dr. Splichal to get MRI results. He was not real happy with me taking pictures at the doctors office!)

First, the bad news; Sadly, Ed did not get good news yesterday. The MRI he had of the brain on Monday shows that the chemo is not working, and the brain tumor is growing. It is pressing on the part of the brain that controls speech, we can barely understand him now, and it effects his strength. The oncologist is halting the chemo drug Temodar.

The Good News...However, the drug Avastin was approved for brain cancer just 14 days ago and if he qualifies for it, he may take a round of it to see how his body tolerates it. It is given by IV instead of mouth (like Temodar is) and will be harder on his body. The worst side effect is the possibility of internal hemorrhaging.

Ed did cry when the neurosurgeon explained that a second resection of the tumor (removal) is not advisable as it would probably erase his memory, but he is a very determined man and is not giving up hope. As soon as we got home he asked for his Bible and went to Psalm 103, verses 1 - 5.

Psalm 103

Of David.

¹ Praise the LORD, O my soul; all my inmost being, praise his holy name.

² Praise the LORD, O my soul,
and forget not all his benefits-

³ who forgives all your sins
and heals all your diseases,

⁴ who redeems your life from the pit
and crowns you with love and compassion,

⁵ who satisfies your desires with good things so that your youth is renewed like the eagle's.

Ed wants me to gather all the info I can on Avastin and this weekend we will go over the info and he will have another 10 days or so to come to a decision to try this new chemo or to stop all treatment.

Please keep Ed in prayer as he considers his options and reality sets in even more, my mom, who is with him 24/7 and his primary caregiver, and his doctors and nurses who treat him.

Otherwise, he is eating good (gained 8 1/2 pounds in 4 weeks), all his blood work was normal and good, they are backing off on his coumedin levels (blood thinner), and he is still able to walk with his walker. The steroids he has been taking in high doses since his brain tumor removal in December 2008 is taking a toll on his body. His strength is compromised, he has dark red blotches on his skin, the skin on his feet and head is dry and flaky, his ankles and above his knees swell, and his hands shake. He gets headaches, but even though he has Lortab and Morphine on hand, he will only take Tylenol. He rarely EVER complains about any of these ailments. A few weeks ago he had thrush in his mouth and throat so bad that his tongue looked like a walking corpse on a zombie movie. His tongue was a dried out, yellowed, crusty thing. We only discovered it by accident because he doesn't complain about pain! We try to explain to him that pain is a warning signal and he needs to tell us when he is in pain, no matter how small, so that we can help him get treatment for whatever is causing it. But I know he doesn't want to make us worry.

With all this going on, I honestly say, Ed is a pleasure to be around. He almost always has a smile on his face and sometimes he says the funniest things! Today we tried a dish that a relative sent over and though it wasn't horrible, it wasn't delicious either. My mom decided to give the remainder of it to the dog, but the dog turned up his nose and walked off. Ed told my mom to be sure to not let his beloved pet, LongLegs, (the cat), go out to where the food was because Charlie, the dog, would eat the cat. Then he got a big smile on his face and said, 'Because the cat would definitely taste better than the food'. It was hilarious. Here is this man, living with, and fighting the worst type of malignant cancer known to man, and he still cracks jokes. I guess you just had to be there.

I read all the information I found on Avastin to Mama and Ed...all the good stuff, and all the bad stuff. Now he can make a more informed decision on whether or not to try this drug. Honestly, with all the positive things being said by the maker of the drug (Genentech/Roche), medical and science magazines, and persons who have taken the drug or know someone who has, I hope he decides to give it a try.

Thank you all so much for your love, support and prayers.

P.S. Please pray for James Logan Brantley, an Oconee Senior, who was just diagnosed with Lymphoblastic Lymphoma, a very aggressive and fast growing cancer. His father asks for all us Christians to pray for his son's healing.

P.S.S. I was present today when Ed received cards from a member of my church and my brother-in-law and sister-in-law. He really lights up when he gets these notes of well wishes and 'thinking of you'! My mama arranges the cards he receives on a book case in his room, so all he has to do is look up and see that people are thinking about him and praying for him.

Chemo - Part 2, Round 2

Keep Ed in your prayers. Tonight he starts Chemo Part 2, Round 2. He takes a high dose of Temodar for 5 nights in a row and then will be off again for 3 weeks. This round was late...9 days late in fact, due to the fact his meds didn't get delivered in a timely fashion. Will order the next round earlier and hopefully will have better results. Please send up a prayer...for Ed's body to tolerate the chemicals, that the chemicals will attack and kill tumor and cancer cells, that it won't make him sick, that it won't make him too weak, that God will continue blessing Ed and all those who care for him and love him.

Living with Brain Cancer

Ed enjoys hearing gospel music sang by friends.

Ed and good friend Debbie.

Ed lays on bed with his cat, LongLegs.

Me and Ed, Ed holding his prayer blanket, a gift from my church.

Ed, me, and Mama...on my birthday.

Ed finished his first week of Round II chemo. He takes a strong dose of oral Temodar for five nights in a row, and then he will take a 23 day break, and then take another dose for five days. This will continue for 6 months.

The chemo did not make him sick at all. It did affect his strength and appetite. He was very weak on the right side of his body and though he never stopped eating, he ate less than normal.

Ed is completely wheel chair and bed bound now. He can not stand unassisted. He spends his time in his wheel chair or his bed.

My mother, who is 72 years old, is the primary caregiver. She is with him 24 hours a day, 7 days a week. She has never been a nurturer or 'caregiver', but she is doing well with his care.

Ed can help a little bit, as far as pulling up and getting into his chair. But you cannot take your hands off him or he will tumble to the floor.

Neither one of them agree to having hospice come in at this time.

It was discovered a couple of weeks ago that Ed has a blood clot in his right leg - calf area I believe. He takes a heparin shot every day, administered by my sister in law or aunt.

We had a big birthday bash for Ed last weekend, even though his birthday is this weekend. Thank the Lord we had it last weekend, for this weekend it is pouring down rain and we have tornado watches!

Ed had a regular visit with his oncologist this week and he didn't get a good report. While he was there the doctor ordered him to have two bags of fluids as he was dehydrated. The doctor found Ed to have a bad fungus in his mouth and possibly his throat. He said Ed had lost 7 lbs. He said Ed had lost a lot of ground since his last visit two weeks ago.

This doctor visit upset my mother terribly, for he talked about Ed dieing and losing his battle, in front of Ed. My mom said this upset Ed and she feels like he doesn't need to hear all the talk about death and dieing. The doctor wants to see Ed next Friday, and stated he would talk to him about ending chemo treatment.

However, Ed, my mom and younger brother all agree if the chemo doesn't make Ed nauseated and or vomiting, why not take it, just in case??? After reading some blogs and web pages from people who have or had (meaning they have since died) brain tumors of the same type, I agree with them.

I am going to ask Ed's oncologist to please try to be more upbeat, more positive, and more encouraging on his next visit. I agree with my mom that all the doom and gloom talk is devastating to my dad. I am not asking him to lie or tell untruths, but to be positive. My mom said she wanted to tell Dr. Splichal that there is more ways than one to be healed from cancer. She said that faith in God can heal also. She is right.

Today, when I visited Ed, on his 63rd birthday, he seemed happy, pain free, and at peace. He smiled when I came into the room, and my daughter and her husband, and my aunt and cousin arrived to visit. He cried when a long ago friend visited. He did very well being assisted into his chair and sitting at the kitchen table to have lunch. His tongue, though still affected by the fungus, appears to be getting well. His leg and ankle are no longer swollen. I could understand a lot of what he said today, and he seemed less confused.

I decided today I am going to stop treating Ed like he is dieing, and start helping him live. He may only have a day, a week, a month...but why not help him live with love, peace, comfort and happiness?

Friends and family continue to visit. They bring laughs, and sometimes tears. But the initial shock of the news of brain tumors and cancer is all beginning to wear off, and people are beginning to realize that Ed likes having people come and act 'normal'. He likes to look at pictures and hear stories of normal life that is still going on in the world.

He continues to take lots of medications for seizures, headaches, high blood pressure, cholesterol, steroids, stool softeners, puffers for breathing, heparin injections for the blood clot and the occasional pain pill when Tylenol is not enough, cough medicine and now add to that 'magic mouthwash' for the fungus in his mouth.

He spends lots of time in bed, but his cat climbs up there and sleeps with him, sometimes laying right on his chest.

We (Ed, mama, me, my brothers, rest of the family and friends), don't cry as much as we did.

Ed has had several visits from ministers and expressed that he believes in Jesus Christ and God and knows where he will go when he leaves this world.

Last Saturday night, he had the first seizure he'd had in eight days. Now it has been 7 days since that one. I don't know why the seizures have become less frequent, but I count that as one of many blessings.

Chemo - Part 2

Ed has decided to take chemo a second time around. 375mg of Temodar each night for five nights, and then off the rest of the month. Plus a strong anti-nausea medication.

He wants to do this, and we will support him and help him as much as we can.

Please pray for him.

The Journey Takes a New Turn

Ed received bad news Monday and, again today.

Monday, I went with him to the oncologist for a follow-up visit. His blood work was excellent. Meaning the radiation and chemo he just completed did not wreak havoc with his red blood cells, white blood cells, or platelets.


He had gained 8 pounds since his last visit. His blood pressure was 118/70.

Dr. Splichael gave us the news that the tumor, what had remained after surgery, had survived the radiation and chemo. It was 1-3/4" in size. The center of it was killed, but the outer layers was alive and thriving.

We arranged to have more Temodar (chemo) tablets delivered. He would take an extra strong dose for 5 days, and then be off for the remainder of the month. He would do this for six months. At three months he would have a new MRI done to see what progress was being made.

Dr. Splichael cautiously mentioned if that didn't work, he could try a IV administered chemo, and if that didn't work, he would do whatever he could to make Ed comfortable.

When we got home from that appointment, he, Mama, and myself, all cried. I wasn't sure why. I guess because Dr. 'S' said he may not ever improve on his speech. Or because the tumor was still there. I don't know.

Today, Ed had a follow-up visit with Dr. Walpert, the neurosurgeon who operated on the tumor in the beginning. She really dropped the bomb.

She said his brain cancer tumor is extremely aggressive. She told him that it would be the cause of his death. She told him she could do surgery again, but 99.99% chance was, it would come back and be just as aggressive. She told him it was his choice to continue with the next round of chemo, but more than likely, the outcome would not be any different.

Dr. Walpert told Ed she could not tell him when he will die, that that is God's decision and God's will be done. However, she said she would guess that he has six months to live. She said she will help with finding him Hospice care.

Ed cried.

When he and my sister-in-law got outside to the car, he cried again.

He cried with my mama when he got home after the appointment.

He has cried with everyone who come to visit today.

It is not that it's a shock that the cancer is still there, or that he will die from it. It's just that we thought he might have more time. And too, I think we were expecting a miracle.

Because you cannot imagine why God would let this happen to such a gentle, loving, loved person.

We are not meant to understand everything on this earth or in our lives. God has a plan and we won't always agree with it, understand it, or want to be part of it. But God's will be done.

All I could tell him tonight when I visited, holding him and crying, is 'I'm sorry you have to go through this. But we will go through it with you. We will be with you all the way, till it's gone'.

He asked me not to cry, and I told him I couldn't promise him that.

Please pray for Ed, that God will see fit to keep him comfortable, to make us able to take care of him and help him through this part of his journey, that God will be gentle with him, as he has always been gentle to all those he meets.

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.

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.)