Thanksgiving 2009

Happy Thanksgiving, and my apologies for not updating you sooner on Ed's MRI results!

My brother, B2, went with Ed to get his MRI results and following chemo treatment on Wednesday, November 18. It was not bad news...but we wished for better.

(Pic #1: Back - Courage, Mama, Ed. Front: SIL (son-in-law) and Arthur)

Ed's brain tumor has grown slightly. However, what little I can understand from the MRI report, the growth is very slight, there is a bit more swelling and fluid in the cavity left from the decreased tumor, but the cortex groove (the groove you see in pictures of the brain) is still grooved and is not effacing...or erasing...becoming 'ungrooved' if you will. In other words, yes, the tumor has grown ever so slightly, but he is still a miracle patient and Dr. Splichal approves of continued use of Irenotecan and Avastin. Of course, next chemo visit on December 2, I will be asking for clarification of this.

We thought maybe Ed had a kidney infection, but his urine test was clean. We thought this because when he had a seizure a day or two before his last doctor visit, he grabbed at his stomach and he's been weaker. Now, we are thinking he may have bruised a rib when he missed the bed and took a fall. B2 asked Dr. S to check him out, but he did so very briefly, therefore it is highly possible he did bruise a rib. B2 will see if Ed can see a general practitioner at the clinic where he gets his bi-weekly blood work done.

(Pic #2: Mama and Ed smooching.)

Ed is having another 'cycle' of debilitating weakness. I have discussed this with his neurologist who feels like the Lyrica does have side effects, but side effects that should lessen with time. Now I am inclined to believe the weakness is a result of on-going chemotherapy treatments. According to stuff I have read, long term chemotherapy can result in 'chemo-brain', a condition in which the patient feels like they are in a 'fog', are unable to concentrate or think straight, and has difficulty speaking or remembering a thought long enough to form the words. From what I have read from blogs and websites, these side effects will probably not subside until chemotherapy has been stopped and usually quite a long time after it has been stopped. So it looks like Ed will have to live with 'chemo-brain' until either, a) the tumor is gone or b) he decides he doesn't want to do this anymore. Right now, he chooses to continue chemo.

My Mom says they will purchase a lift chair soon. Ed is too weak to get himself out of his recliner alone anymore, and it is becoming more difficult for him to walk, even with the aid of his walker. The wheelchair came back out this week.

(Pic #3: B2 tries to get Ed to try a meatball...a half meatball to be precise!)

Me and my girls and son-in-law took Mama and Ed a Thanksgiving meal Thursday, and I am happy to report Ed ate heartily of most of the food I took. Most...but he pushed the mac-n-cheese and meatballs around on the plate. He's never been a fan of pasta, and not really crazy about meatballs or meatloaf. My brother attempted to get him taste a meatball, and he would have nothing to do with it! However, today he said he did finally try them later and thought they tasted pretty good.

Ed and his family have so many things to be thankful for this year. Even in the face of a terrible disease, there have been so many blessings. Ed came through brain surgery with flying colors, he did wonderful throughout radiation and two chemotherapy regimens, he was approved for several different low-income/non-health care covered programs, the life-long silence between he and his first son has been broken, he has kept a positive and winning attitude through-out, and his salvation has been assured and our family has gotten closer. We can either sit and cry and wring our hands in despair over the terrible thing that has happened to him, or we can celebrate his life and continue to help him live a purposeful life and go on with all our lives, though we be changed. Thankfully, we all choose the latter!

(Last pic...B2 with Mama and Ed...Happy Thanksgiving!)

One Year Ago Today

One year ago today, Ed had the first seizure, which would change his life forever. Here are the highlights of the past year:

11/11/2008: First seizure which was misdiagnosed in the ER as heart attack. Was given several heart related tests, and sent home after four days in the hospital, with a heart monitor.

11/26/2008: Second seizure. Upon arrival at ER was given CAT scan of the head. Mass on brain discovered. Spent Thanksgiving in the hospital.

(In the photo, Ed rests while receiving Chemo, November 4, 2009.)


12/3/2008: Ed has brain surgery remove brain mass. Dr. Walpert, nuerosurgeon, confirmed her fears of Glioblastoma Multiforme, a deadly form of brain cancer. Predicts Ed will survive 4 to 6 months.

12/22/2008: Celebrated family Christmas at my brother's house, From all appearances Ed looks healthy and normal.

12/31/2008: New Year's Eve. Ed has 3rd and 4th seizures. His seizure medication is adjusted.

01/12/2009: Ed has first radiation session which will last for six weeks. Also begins chemotherapy with Temodar.

01/14/2009: Seizures #5, #6 and #7 come on this day. The following day he sees Dr. Mitchell, nuerologist for seizures. Dr. Mitchell adds Lyrica to accompany Dilantin in the battle to get seizures under control.

01/18/2009 through most of summer: Ed continues to have seizures, at first about a week apart, then two weeks, and finally after gradually increasing Lyrica dosages get them under control.

03/13/2009: Ed develops a DVT (deep vein thrombosis) . . . a blood clot in his leg. Starts daily injections of blood thinners to dissolve the clot and prevent more from developing.

03/2009: We begin to see big changes in Ed's physical appearance and abilities. He loses his hair. His face is slack and he becomes unable to walk and difficulty using his hands. There are periods of time when he is completely bedridden and wheelchair bound. His speech has become garbled and it becomes increasing difficult to understand him. Dr. Walpert urges us to bring in hospice. We talk with hospice and Ed and Mama agree it is not time for hospice at this point.

04/2009: MRI shows brain tumor has grown back and perhaps larger than orginal tumor. Dr. Splichal stops Temodar treatments, but approves Ed to begin treatment with Irinotecan and Avastin. Our family hosts a gospel singing with friends, Ed enjoys this very much, but he is very weak and suffers a seizure in front of friends and family.

05/2009: Ed regains some of his strength, starts getting himself in and out of bed again. Is able to help take care of himself again. This improves over the next month or so, to the point he is able to walk again, with the aid of his walker.

06/03/2009: Intravaneous chemo treatment with Irinotecan and Avastin begin. This treatment continues as this is written, received every other week at North Georgia Cancer Center in Athens, Georgia.

08/2009: MRI of the brain shows that Ed's brain tumor has reduced in size by half! Dr. Splichal approved continuing use of Irinotecan and Avastin.

08/30/2009: The seizures are back after four months of freedom from them. Ed sees his Mother at her nursing home when his family got together for a reunion; he had not seen her in about a year. After a long day visiting, Ed had a seizure. Sadly, on September 9th, upon returning home from chemo, Ed learned his mother had died.

09/30/2009: Another seizure and another medication adjustment. At this time, Ed is having a lot of the side effects associated with taking higher dosages of Lyrica; muscle weakness, headaches, confusion, blurry vision, sleepiness.

10/15/2009: Ed sees Dr. Mitchell, neurologist, today. Dr. Mitchell says Ed is a walking miracle. He says that he has never seen a GBM patient with a brain tumor that has gotten smaller. He urges Ed to keep taking the higher doses of Lyrica even with the side effects listed above, as he feels those side effects will lessen over time.

11/10/2009: Ed has a seizure after being seizure free for two months.

11/11/2009: Ed gets an MRI to check the progress of his chemo treatments on reducing the brain tumor. He will get the results one week from today, when he goes for his next chemo treatment.

Ed has come a long way. His family was told at the time of surgery to remove the initial brain tumor, he may live six months - he may live over a year. In March of this year, we were urged to bring in hospice, that the time was near. Ed and Mama refused hospice care, and Ed has fought to overcome his disease.

Ed has never complained about his illness, his treatments, his side effects or his lot in life. He has never asked 'Why me?' In fact, when asked, he has answered, 'Why not me'. I have seen him cry, he is human after all, but he has always pulled it together and regained his composure. When he cried, it seemed he cried for his kids and wife, not for himself. He has lost almost all of his speech abilities, but he uses hand gestures and answers questions with yes and no to communicate. Anyone who sees him sitting in a chair, would not guess he is battling a fatal disease. His hair has grown back, he weighs in at 191 pounds, he has intelligence in his eyes. He looks 'normal'.

Next Wednesday Ed finds out if his brain tumor continues to shrink, stayed the same size, or has grown. If it stayed the same or has shrunk, he will continue IV chemo treatments with Irinotekan and Avastin. These drugs inhibit the growth of cancer cells and cuts off the blood supply to existing tumors. We are praying that the miracle continues. He has made it exactly one year from the date of his first seizure. He probably had the tumor in his brain for one year prior to the first seizure. He had quit smoking one year, to the month, of the first seizure.

This illness has brought our family closer, and has brought Ed closer to God. He has had several people talk to him about his beliefs and I am happy to know he accepted Jesus Christ as his savior as a teenager and continues to beleive today. He reads a passage from the Bible daily and beleives if it is God's will he will be saved from this disease.

We are all happy that he has made it thus far. No, his quality of life is not excellent, but it is bearable. He is able to get himself in and out of bed, in and out of his wheelchair when it is needed, and is able to walk with the help of a walker. He feeds and bathes himself. He helps my mom with breakfast by getting the ingredients out of the fridge and flipping sausage in the pan. He smiles alot and laughs, and participates in conversations the best he can. He is still very opinionated. Even though he cannot talk very well and will often fall asleep while visiting with you, he is still Edward inside that brain! He still gives me driving directions when we go someplace and tries to tell me and my brother how to put plastic on the back porch.

We wait for the MRI results...it will be a long week!

Chemo Treatment No. 12

Last Wednesday, November 4, Ed received chemo treatment no. 12.

First, he saw Dr. Splichal briefly. Dr. Splichal confirmed that Ed is still doing very well on chemo with Irinotecan and Avastin. He maintained his weight; 191.6 pounds. His blood work was all very, very good. His blood was a little thin, so he changed the coumidin dosage to (1) 2.5 mg tablet one day, alternating the next day with (1-1/2) 2.5 mg tablets of coumidin. His blood pressure looked great.

Chemo went smoothly and mostly uneventful. It did take, for the first time since this journey began, two sticks to get the IV started. Other than that, everything was fine.

Dr. Splichal ordered a MRI of the brain for Ed on Wednesday, November 11. It is time to check the progress of the chemo treatments.

Chemo Treatment No. 11

We arrived early at Northeast Georgia Cancer Center this past Wednesday morning. We were seen almost immediately by Meredith, the Physician's Assistant. Ed's visit was very quick and routine. The hi-lites are as follows:

* Ed gained two pounds since last visit. He is at 191 now.
* His blood pressure had dropped to 120-something over 70-something. (don't have notes with me at this time).
* His blood work was great, but his blood was a bit thick, so his coumidin dosage was adjusted again. One day he takes one 2.5 milligram caplet, and the next day take one and half 2.5 mg caplet, and the next day back to one caplet, back and forth.
* Meredith said Ed is doing good.

On over in the treatment center, Ed settled into a recliner and soon a nurse had his I.V. started and his toxic cocktail began dripping into his vein. This week, Ed chose to have his I.V. in his right arm. He usually gets it in his left arm. He never complains, but I wondered if maybe the left arm is beginning to get tired of getting all the needle action.

This visit we got to know an older couple who were there for chemo for the husband's lung cancer. After talking for a few minutes, we learned that they lived just a few miles from where Ed and Mama live in Winder, and that they also lived in Lilburn, near where we lived, way back in the 70's and 80's. They were both retired school teachers and very nice. The wife was so attentive to her husband, holding his hand while his I.V. was being inserted, and making sure he got snacks and drinks. There was also an older gentleman seated on the other side of Ed, but we didn't get much out of him, except when I said I was going to the snack machine, he gave me change and asked me to get him some peanut butter cookies.

When Ed's chemo treatment was finished, we said our good bye's and headed home. It is interesting the different types of people you meet in the chemo treatment rooms, and what types of cancers they have. So far we have not met another GBM (Glioblastoma Multiforme) patient. We may not, as I believe Dr. Splichal said he treated 8 patients with the disease last year. Compared to other types of cancers, I don't think it very common. But no matter what type of cancer, I guess everyone in the chemo treatment rooms feels a 'kinship' in a way, that everyone is there for the same reason, fighting to live.

In two weeks we will be back for Chemo #12 and should learn when Ed will get his new MRI. Both Meredith and Dr. Splichal have said it should come about in November.

One Doctor's Opinion...It's a Miracle

Ed had an appointment with his neurologist, Dr. Mitchell, today. This was a regular office visit to check up on his progress and Dr. Mitchell had not seen Ed in probably four or five months as we had to cancel his last appointment due to not feeling well and not needing to be out in the pouring rain.

(Picture: What a Glioblastoma Multiforme tumor looks like. Lots of 'branches' come off of the main 'body' of the tumor and grow outwards into surrounding brain tissue. When the tumor is is cut out, the little strand like projections are so small they cannot all be removed. Therefore, a new tumor can start from a tiny strand left behind. The drug Avastin cuts off the blood supply to the tumor (and hopefully the strands) and the drug Irenotrecan stops, or at least inhibits, cell division...preventing cancer from growing at all or not as fast.)


Dr. Mitchell had not seen the results of Ed's last MRI, done August 3rd of this year. I loved the look on his face as he read it. He looked puzzled, then shocked, then just amazed. He read part of it aloud, then starting reading to himself, his mouth moving. He finally looked up and said, this is amazing. I've never seen a GBM patient have a reduction in tumor size before. It is unheard of. I have never seen this happen with a patient.l It is what you would call, a miracle. During our conversation, he said the word 'Miracle' two or three times. Me and Ed were smiling. You rarely get this type of reaction from a doctor.

Next, down to business. I told Dr. M of my concerns that the dosage of Lyrica Ed was taking was making him weaker, more confused, less able to speak. Dr. M reassured me that Ed has not 'topped out' on the dosage tolerable for Lyrica. He said yes, the symptoms do sound like common side effects resulting from taking Lyrica. However, he feels that Ed needs to stay on this drug and on this dosage. He said that with time, the side effects will lessen and the good effects (no pain, no seizures) out weigh the bad effects. He said there are other drugs used to control seizures, but they would have the same side effects as Lyrica. Also, Ed is approved to receive patient assistance with the drug Lyrica. Applying for patient assistance for other drugs could be time consuming and perhaps frustrating. He strongly urged we go with his recommendation to stay with Lyrica and wait for the side effects to lessen and/or subside. We agreed.

Other highlights of the visit; Ed's blood pressure was good, his blood work good, and Dr. M put him through several little 'tests' (raising his arms shoulder level, holding his arms up with his eyes closed, I noticed Ed's right arm would lower while doing this test...wish I had asked what that meant), touching his nose with his index finger and then touching Dr. M's finger. Some type of neurological assessments, maybe to determine presence of stroke? I am not sure. I should have asked.

Dr. M is a good man. In the past, he has told us he prays for Ed and also his statement. . .' this is a miracle', shows he is a good Christian man. I trust his judgement and treatment decisions. He shook our hands and told Ed to come back in six months. That tickled Ed. So me and the 'Miracle Man' took off...cruising down Hwy 316 towards home, happy once again to have received a 'good report'.


P.S. It is a miracle that Ed's brain tumor has been reduced. We can say it is because of the chemo drugs Avastin and Irinotecan and the care he receives from his doctors, family and friends. I know though, that this miracle is a result of God's grace. He has listened to Ed's prayers and everyone who has prayed for him. God is the only person who can bring about a miracle. All the glory goes to God!

Chemo Treatment No. 10

My brother, B2, took Ed for his chemo treatment this past Wednesday, October 7, 2009. This was a Dr. Splichal appointment, and fortunately, another 'uneventful' visit.

Ed had gained one pound since his last visit two weeks ago, and is now back up to 189 pounds. His blood pressure was good...130/80. His blood work numbers were good, but his blood was a little thin so they dropped his Coumidin dosage from one and a half a day to one a day. My mom had wanted to know if Ed could take a magnesium supplement for leg weakness and pain and Dr. S said yes. Very routine.

Chemo went well and uneventful as well.

Because of the return of the seizures, Ed is taking a higher dosage of the drug Lyrica now. His dosage went from 300 mg to 375 mg about four weeks ago, and then two weeks ago went to 450 mg. Lyrica is a drug used to treat fibromyalgia and seizures. There is quite a list of possible side effects from this drug, and feel that Ed being on the high end of the maximum daily dosage allowed, he is beginning to get some of the more serious side effects; mainly muscle weakness and the loss of cognitive ability. His speech has worsened notably and he really has to struggle to maintain a single train of thought and get out anything he is trying to say.

Next week I will be going with Ed to see the neurologist, Dr. Mitchell, and I have a lot of questions to ask him about this drug, Lyrica, and the dosage Ed is taking. He had mentioned earlier in Ed's illness that there is a third drug he can prescribed to try to get Ed's seizures under control. I want to know what that drug is and if it could possibly be an alternative to Lyrica, or if a lower dose of Lyrica could be taken in conjunction with that drug. I feel that a lot of the symptoms Ed has...difficulty speaking, thinking, walking, bruising, muscle weakness and fatique could all be side effects of Lyrica. I want answers and he needs help. I put faith in Dr. M that he will work to get Ed to a better place. I have to believe this, for I feel Ed may now feel the worse he has in a very long time.

November will bring about a new MRI. We pray for God to show the doctors, us, and Ed, that the chemo cocktail he gets every other Wednesday continues to work and that the brain tumor will be even smaller than a few months ago. Maybe it will even be gone.

One can believe and have hope.

Chemo Treatment No. 9

Ed's doctor visit and chemo treatment no. 9 was mostly uneventful. Every other visit Ed sees Meredith, the P.A. (Physician's Assistant), instead of the oncologist, and this visit was with Meredith. Here are the hi-lites of the visit: * His weight remained the same - 188 lbs. * His blood pressure was good. * All his blood work came back with normal/good levels. * All medications levels remain the same.

Meredith noted in her portable computer that Ed got a flu shot since his last visit and that headaches continue, he'd had a seizure since the last visit, his appetite is still at a loss and he still has the strange sensation of water trickling down his forearms. All in all, Meredith, like Dr. Splichal, feels Ed is doing quite well to be a brain tumor/cancer patient. Ed's seizures had been under control for four months, but now he has had three seizures in the past month. One on August 30, the next one approximately two weeks later, and then the most recent one was yesterday. About the same severity and endurance; no loss of consciousness, eyes rolling, mouth moving and saliva from the mouth, head and body jerking. Luckily, Ed has never fell or injured himself or anyone during one of these seizures that last just a few minutes. As always, he is left weak and briefly disoriented, but recovers relatively quickly.

At the time of the second seizure during this new round of seizures Dr. Mitchell (neurologist) decided to up Ed's Lyrica dosage from (4) 75mg capsules to (5) 75mg capsules. After I reported the latest seizure, he upped it one more capsule starting tonight. Ed now takes a total of 450mg of Lyrica and 500mg of Dilantin and 1 mg of steroids (Decadron). Dr. Mitchell doesn't seem sure why his seizures have returned. He said perhaps since Dr. S is slowly weaning Ed off Decadron (over past few months has gone from 12mg a day to 1 mg a day), that his brain could be swelling again. Or perhaps he is just having 'break-through' seizures. We are hoping the increase of Lyrica will have the desired effect.

Ed continues to get about with his walker, unassisted. Dr. S stated in at Chemo Treatment no. 8 that he wanted Ed to wean himself off the walker. Ed is scared he will fall and has not attempted to give it up yet. He is still assisting mama with making breakfast. He gets everything out that is needed to make breakfast, flips sausage as it cooks in the frying pan, and other things that Mama says are a big help to her.

He still has a non-complaining attitude and is still very pleasant and never seems to question his lot in life. He does seem to be more 'down' lately than he has been all summer. His speech is still hard to understand. I have helped him apply for assistance to help pay for speech therapy, but it's a lot of paperwork and really gets into your business. I don't know if we will ever get anywhere with it.

The strangest thing that has come about late summer and early fall, is the cat Mama and Ed have has begun having seizures. The first one happened approximately a month and half ago. This past Sunday he was sitting on the rail by the front porch and he dove off into the bushes. Mama thought he was after a lizard; I thought he fell off with a seizure because when I looked in the bushes for him he was laying still on the ground, then slowly got up. Today, Mama reported that the cat had a seizure right in front of them. Like the first one, he was laying in a chair on the front porch when he began seizing. He then fell off the chair on the floor and then lay stretched and taught, like he was paralyzed, with eyes wide open. Afterwards, he slowly came back to himself and acted normally. Mama and I have speculated as to why the cat could be having seizures. Mama did put TWO Frontline capsules on his fur a week before the first seizure. She thought it would keep him more 'flea-free' and not hurt him. Could he have gotten into some other type of poison? We just don't know. My Aunt Judy wonders if he picks up on Ed's seizure activity and responds to it. We just don't know. Ed still needs your prayers. Please pray that his seizures will get under control once again, and that his body will continue to tolerate chemo.

Please pray for Mama's health and her ability to take care of both herself and Ed. Please pray for his doctors that they will know how to treat him.