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.
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.
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