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.

March 18, 2009

Ed had his second does of Chemo-Part II last night and came through it okay again. No nausea, no pain, but weakness in abundance.

He ate a bit better today. He tries to help get himself up out of bed and into his wheelchair.

He and Mama had lots of visitors again today. They like the company, but it can also be tiring. Mama needs the help and company, so they don't complain. She said every time they try to take a nap, someone drops by. It's okay, she said.

I am thanking God for his gentleness today.

Rainbows and Butterflies

Ed did very well his first night of Chemo-Part II. He did not get nauseated, but was probably very restless as Mama said he woke her five times during the night...to urinate. No vomiting or nausea, but he was very weak this morning.

He is taking injections at home for his blood clot, thank God for my sister-in-law who is able to give the shots! Me, I hate needles! He said they smarted this morning!

I saw him at dinner time and he was smiling alot. Very weak, but great spirits and peaceful. Mama and B2 gave him a shower and he was 'shiny as a new penny' - my brother's words.

As the song goes...It's not always rainbows and butterflies...but we'll take what smiles and laughter we can get, when we can get it, and while we can get it.

We purchased a second hand hospital bed today and when I left their house tonight, Ed was learning how to use the controls...raising his legs, letting them down, raising his head, letting it down, till he found a happy medium.

Sometimes and it's thunderstorms and caterpillars. But today it's rainbows and butterflies.

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.

A Long Day

The day began with a meeting at my Mama and Dad's house, with two reps from Agape Hospice, at 8:00 am.

Before the two ladies arrived, my brother (B2) and I witnessed our Dad have a seizure for the first time. It was his 32nd seizure since November 2008. We both cried, which made Ed cry. We couldn't help it though. B2 sat right in front of him and held his face and I stood behind his chair and held his shoulders and Mama held his head. It only lasted a minute or two and was not a violent shaking and jerking. He did not lose consciousness. His head made small back and forth jerking motions. I cannot begin to imagine what this feels like. I think he is humiliated for anyone to witness his seizures. His body was wracked with sobs and I became nauseated with my concern and sadness for him.

After his seizure and tears subsided, we all finished our breakfast. You can only try to go back to some normalcy.

The meeting went as well as I guess it could. We all cried a little bit, and Ed had to leave the room once to regain his composure.

The reps from hospice explained their purpose...to help a person live the rest of their life in peace, comfort and without pain. They said they will help him stay at home as long as he possibly can, quite possible until he dies.

But first he must decide if he is ready to stop all treatments regarding his brain cancer. Before hospice comes in, you have to have reached the decision that you don't want to try any other 'extreme' measures to extend your life.

How sad to sit in the room with your sick parent and discuss altering the home to accommodate wheel chairs and hospital beds, discuss what the service will assist with (such as bathing, toiletry, dressing), and then to discuss how that person's final days will be handled.

The worst was the part when they said 'if the patients family cannot take it anymore, he can go to a facility'. They were as kind as they could be, and only answering questions, but how difficult to discuss the last days and pain management.

Later in the day, B2 took Ed to Athens Hospital to have an ultra sound on his leg. It was confirmed that he had a blood clot. At first, they were going to admit him. But an hour later my brother text me and said to stay home, that they were letting him go home.

The next couple of days we will take him to Outpatient Services to get injections in his leg (clot dissolving agents?) and have it rechecked on Monday. At 9:20pm, B2 and Ed were headed home.

I thank God I have a brother who shares in taking care of our parents. My other brother and his wife help also. Everyone helps in their own way. I hope I am helping enough.

Another Tearful Day

Today it was determined Ed has a kidney infection. He rode with Mama and Aunt J to Jefferson for mama's doctor visit. I asked that he get a urinalysis while he was there because there were indications he may have an infection.

Tomorrow morning, (Friday), Ed, Mama and me meet with two ladies from Agape Hospice of NE Georgia to discuss options for the near the future. We have so many questions.

Tomorrow will be another tearful day.

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.

Computer Problems!

I have been having computer (and time) problems, but hope to update you on Ed's progress tonight! Have a great day!