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.