A New Look

Hey - Just wanted to change Ed's page up a bit! I think blue is more 'his color'. He looks good with blue! Ed went in today to get his blood work done in preparation for his next dosage of chemo/Avastin tomorrow. So far, he has very little side effects from the first dose two weeks ago. He has been doing more for himself, and has had two small episodes with diarrhea, and one small episode of nausea, but that is all tolerable and manageable.

My sister-in-law was supposed to take Ed tomorrow, but she smashed her pinkie a few weeks ago and is having a bad reaction to the medication she ha s been taking for it, and now she is too sick to take him. B2 is still unemployed, so he has graciously accepted responsibility for taking Ed to get chemo a second time. I told him I will give him a break in two weeks when Ed is due for Dosage 3.

My problem is I don't get paid for days off from work, and I will not get paid for being off for the 4th of July holiday (on July 3), but it's all good. God has always provided in the past, and he will continue to do so. I hope all goes a little more smoothly at the Cancer Center tomorrow...hopefully, my brother will have no run-ins with the nurses.

Smaller Head Lump

The lump on Ed's head - where the tumor lays beneath bone and skin and titanium - has gone down. It appears the swelling in his face has gone down, also. Mama reports that he has one bout of diarrhea, but nothing serious. She also says that Ed has been doing more to take care of his personal needs such as getting a drink from the fridge and bathing unassisted. One morning he stood from the kitchen table and walked to the stove without his walker. She is unsure if he did this on purpose, or just forgot to use it! She is excited by his progress and I think this boosts both my Mama and Ed's moods and spirits. His speech has not improved a whole lot, but he has taken to wearing his dentures more often and I do think that helps with his speech being more easily understood.

Here are pictures taken this weekend:



Picture 1: Ed - he wanted a picture up close to see if his smile is straightening up yet...it is!

2: Ed and my cousin Stacy.

3: Ed, Mama and granddaughter Arthur

4: Ed and Arthur

First Avastin Treatment Goes Well

Ed received his first treatment of Avastin last Wednesday. The nurse told me he was to arrive at 9:20 a.m., and by 9:40 a.m., he would be hooked up to his I.V. and begin his Avastin/chemo drug infusion. My brother (B2) elected to take Ed to his first treatment, as he is currently on a (very) flexible work schedule (as in laid off and working whenever he can).

Therefore; I do not know what happened except for the bits of info I have gotten third hand, from my Mom, and bits I have gotten from Ed himself. Remember, Ed's tumor has affected his speech and it is very difficult for him to express himself and difficult to understand what he does manage to get out. For whatever reasons, Ed's I.V. didn't get started until about ten minutes till eleven that morning. He and my brother didn't leave the cancer center until about 4:30 pm. So I take it the chemo treatment takes approximately five hours to complete.

Somewhere in between, B2 went to get them lunch which they ate at the center, and my brother had a run-in with a nurse who apparently wasn't looking where she was going and nearly plowed through my dad and brother while they were making a trip to the restroom. A trip to the restroom involves pushing my dad in a wheelchair and pulling the I.V. tower along behind.

My brother has many gifts, skills, and attractive attributes. Patience is not one of them. According to rumor he had words with the nurse. I am glad I was not present.

I think for the most part, everyone at the cancer center is very focused on the patient and tries hard to be kind, caring, informative and helpful. Dr. Splichal is especially kind and knowledgeable. The nurses seem to truly care and take pains to be gentle and soft spoken. Even the front desk clerk and the check-out clerks are usually very pleasant and sweet. I have run into one nurse (aid???) that I didn't find to be very friendly or approachable, but I've not seen him at the office but once. I think it takes a very special person to work with people who are very sick and/or dieing. I think these persons have to have something inside them that allows them to be knowledgeable, but also sympathetic and supportive. They have to have a little bit of angel inside them to be able to have patience with the cancer patient and their families. I thank God for these doctors, nurses, aids, clerks, and anyone my dad or us come in contact with.

So far, Ed has not had any side effects from his treatment. He receives medications along with his chemo and Avastin to combat nausea and vomiting. His normal side effects of having cancer, a brain tumor, and all his medications have not gotten worse or better. He was informed that 10 - 12 after his treatment he could begin having diarrhea. Ed and my mom have an arsenal of foods and medications on hand to combat it if it happens. Today was the 7th day after his treatment. No diarrhea yet.

Ed also had a follow up visit with his neurologist this week. The neurosurgeon suggested he have a follow-up with the neurologist to see if his seizure medications could be tweaked, as he is still having seizures...usually about two weeks apart, and usually having at least two about an hour or so apart. On a scale of 1 - 10 , 1 being a very weak seizure and 10 being a full-on, grand Mal seizure, I'd say his are somewhere in the middle...maybe a 5 or 6. The neurosurgeon kept his medications the same, but upped the dosage of one and changed the schedule a bit on when to take them. Hopefully, this will eliminate or reduce the number and severity of his seizures.

Ed will go for his second chemo/Avastin IV infusion next Wednesday, June 17, I think. My sister-in-law (B1's wife) will take him on that visit. Hopefully, that visit will go a little smoother. I'll let you know. Ed continues to have his good sense of humor. This past weekend he showed me the thick growth of hair on his legs, arms, hands and fingers, caused by the steroids he takes. He told me he has a job. "What???" I asked. He said yes, he would be on T.V., in a commercial. I am still looking at him with my eyes narrowed. Yes, he said, I am doing a Geico commercial. No caveman suit needed.

Hope is alive!

Ed with son-in-law (Hubster) and granddaughter Courage.

Praise God from whom ALL blessings flow! I got a call from Dr. Splichal's office today (Ed's oncologist)...Ed will begin his Avastin treatment tomorrow! Yeeeeaaaahhhhhh! The patient services coordinator informed me that although Cancer State Aid has not yet approved payment, she is sure they will eventually, and she is pushing Ed on through for treatment! She said if Cancer State Aid funding is depleted, she is sure the drug manufacturer will give patient assistance with the drug.

My brother is taking him to his first treatment. The instructions were to eat a good breakfast and be prepared to have lunch there. This drug is administered via IV and takes hours. The Avastin is not actually the chemo drug, I am not sure of the name of the chemo drug that is taken with the Avastin, but the Avastin is a drug taken with chemo to enhance it and to also act on it's on to cut out the blood supply to tumors.

I thank God that this young lady has worked so hard to get this drug for him and for having patience with me as I call every few days to get an update. I really thought she was ready to crown my head (and not with jewels) yesterday when I called her. I think I could hear her speaking through clenched teeth. But God bless her, she kept her cool and delivered the good news today.

Just a reminder, this is not a cure. If the drug does it's job and Ed's body is responsive and tolerant, a dose of this drug every two weeks for six to twelve treatments will at the most reduce the size of the tumor, at the least it will slow or stop the growth of the tumor. Thank God it came through because as you know, his tumor is growing. His headaches are becoming more frequent and bothersome. He doesn't want to take the Lortab prescribed to him, but for the past few days he has reluctantly given in to our pleads to take it to relieve his pain. I am praying that the drug will start working immediately and relieve some pressure on his brain. No, it is not a cure, but the hope is to prolong his life and better the quality of his life.

Hope is alive. It comes to us in the form of a colorless, odorless, astronomically expensive liquid that will be dripped into his vein through a tube and needle. It comes in the form of stories shared by others who have taken Avastin with good results. New breath of hope comes to us in the form of cards received by family, friends and strangers with well wishes. It is delivered to us by people who have been on their knees praying for healing and gentleness. It is felt in the hands of nurses, doctors, office assistants and kind people we meet with each trip to the doctors. Hope is still with us.

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.

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!

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.