Saturday, May 23, 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.

Monday, May 18, 2009

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!

Sunday, May 3, 2009

His sense of humor is intact


Ed's sense of humor is intact, alive and well. His hair is just beginning to grow back in the bald zone (the left side of his head where he received radiation treatment), but it is small, fine, hairs that you can barely see at this point.

My mom found an old wig of hers from years and years back and Ed decided to put that wig on! It is quite hilarious to see him in the wig. Ed's dad actually had a head of hair that thick and that big and that wild, so seeing Ed with that wig on is reminiscent of his dad's ample mane.

You can see by the look on his face that he is enjoying making a little fun.

Tomorrow, Monday, he has an appointment with the PA at the oncologist's office. Things we will have checked out:

* The continued swelling of his ankles and puffiness in the face.
* The red markings that are popping up on his arms (caused by chemo??)
* The readings on his blood work which was drawn Friday.
* His weight and BP.
* Okay to order the next round of chemo? (Want to avoid a delay such as we had this last time. It put him a week and half later getting his chemo treatment started than was scheduled).

In a couple more weeks he'll have an MRI of the brain and we will see what is going on inside that head of his. Please keep praying for his well being, his healing, his quality of life. Please keep praying for my Mom to keep her wits about her to take care of him, to have the strength to keep going, and that depression won't get her down. Keep praying for his doctors that they can keep helping him.