Christmas Gathering with Family - 2009

Ed and his family gathered for a happy Christmas Celebration the Saturday evening before Christmas. My youngest brother hosted our holiday party again this year, and it was a grand time for us all!

Upon Ed's arrival at B2's house, my brothers got our dad out of the car, into his wheelchair, and then hoisted him, chair and all, up the (rather steep) steps that lead up to the porch and into the front door. I know Ed must have been nervous about his 'flight' up the stairs, perhaps worrying he may be dumped out on the ground, but the boys did a good job and not a even a hair was lost going up those stairs!

(Picture 1: Ed enjoying Christmas Dinner.)

The house was full of brothers, sister-in-laws, an aunt, an uncle, moms and dads, kids and grandkids, and of course, Ed and Mama. There was even two cats and a pup in the midst at one time or another.

(Pic 2. Ed and Momma)

The aroma of both deep fried and roast turkey met us in the kitchen/dining area, along with dressing, greenbeans, potato salad, squash casserole, mashed potatos, sweet potato souffle, creamed corn, and apple-cheese bake. We all dug in after Courage's husband (SOL) blessed the food. After the meal, there was 9-layer chocolate iced caked and pecan pie for dessert. Everything was delicious and there were few left overs to be saved and taken home.

(Pic 3. With the grandkids.)

After partaking of the meal we all gathered in a circle with a pile of gifts in the center. The game of 'Dirty Santa' commenced and the gift most often stolen was an IPOD station thingy that you place your IPOD in and have the music play over speakers...and a bag of assorted whiskeys. Hmmm. The assortment of Dirty Santa gifts ranged from dishes to bath and body products to clocks and giftcards, and the aforementioned music machines and spirits.

Ed ended up with a $20.00 gift card to Walmart and Mama a set of colorful, vintage glass cooking bowls. I think both were satisfied with the results.

After all this excitement, Ed looked tired and both he and Mama seemed ready to go home. After a round of pictures were taken of different groups and then a whole group, Ed was bundled back up into his chair and carried back down the steps and tucked into the car.

(Pic 4. Me, Hubby and Ed.)

Back home, they both got ready for bed and waited for us to leave so they could lock up the house and crawl in bed. Me, I am driving home and thanking God above for another Christmas with them. Who knows when it will be the last?

(Pic 5. Dirty Santa Gift Pile)


(Pic 6. Ed, Mama and Children)

Chemo Treatment No. 15 - I'll be happy for you. Tomorrow.

Ed had chemo treatment number 15 on Wednesday, December 16, 2009. First, we saw Dr. Splichal for the regular 'check-in'. The hi lights of this visit are as follows:

* Ed weighed 185 lbs. He has lost 5 lbs. over the past few months. (Not a bad thing. He is 'overweight' compared to his normal weight before all this brain tumor stuff started over a year ago).

* His blood pressure was slightly higher than it has been being, with the bottom number being 90. But the nurse said he is still in the 'good' range.

* Dr. S said Ed still doing well for a brain tumor/cancer patient. He does see that the chemo has weakened him.

* The doctor examined Ed's feet, as I told him that his feet had been turning a dark purple-y color. He explained that Ed's feet were getting oxygen (he has hair on his toes...if no oxygen were getting to the toes there would be no hair growing on them), but the veins in his legs were compromised and therefore the blood is slow to return back up the leg. He did not think this was of grave concern. However, if the blood/oxygen was not getting to the feet it would be a concern.

* Dr. S also examined Ed's abdomen, in an area where we have noticed a bulging out, or swelling. Dr. S said the same thing the Physician's Assistant, Meredith, said last week. He did not feel a mass and it was too low to be a broken rib. He said perhaps Ed has a hernia in the area. He did not express that this was a major concern right now either.

* Dr. S. went over the same thing he has told us the last couple of times we saw him, that he wants Ed to take chemo treatments as usual through January 2010, and then take a break from chemo to let him regain his strength. He said he will have an MRI done in February to determine the progress of treatment. He mentioned once again that we may want to consider hospice.

I am having a hard time wrapping my mind around 'hospice'. I have believed that hospice is called in when you are ready to stop all treatment and prepare yourself for your end on this earth. However, I have been following a young man who has a fast growing cancer of the lungs ( I believe), and the person who writes the blog says that this young man goes to hospice to get support and get 'built back up' in a sense.

When Ed's doctors mention hospice, he withdraws, and I cringe. But maybe I need to do more research. Maybe it doesn't mean only that they come in to make you comfortable so you can die in peace and with dignity. Note to self: Research Hospice.

Dr. S seemed especially loving and gentle with Ed today. He hugged him, held his hand, held his face and head between his two hands. He told us how amazing it has been that Ed has come this far. Dr. S seems genuinely to care about him. But sometimes I feel he wants to give up, but don't feel like Ed is.

On to the treatment center where we scope out treatment rooms for the best seat. We chose room #4 again, as it only seats two patients and affords more privacy. Even though the room does not have a tv, sink, and only one visitor chair, it is still more attractive to us then the big communal areas. Ed's IV is started without incident.

Soon we are joined by Glenda. At first, Glenda doesn't seem to want to be put into the room with us, but the nurse urges her take this spot as chairs are running out quickly and she may end up sitting in the crowded waiting room until another chair opens up.

I sit and doze in my chair, and Glenda grows bored and introduces herself and from that point on she pretty much talked non-stop. She was in her late 50's, early 60's. She had found a lump in her breast earlier this year and in quick succession she had a mastectomy and chemo. She went on to tell us how devastating it was to her and how much terrible physical pain she had suffered and how her port was sore, and how her life had changed.

Also, today was her last chemo treatment. She was so happy of that fact. She had tears in her eyes telling me and Ed today was her last treatment, and when any nurse came into the room she told them.

I wanted to be happy for her. And I knew deep inside I was VERY happy for her, but when she told us this I looked at Ed and I saw his face and knew he was thinking, I don't have a date for my last chemo treatment. Actually, Chemo No. 18 could be his last treatment; because who knows if Dr. S will approve him for another round after his 'break'. I wanted to be happy for Glenda because she had traveled a hard road; she suffered the loss of her breast, she had a port in her chest to receive treatments through, she had lost her ability to drive - be it temporarily, she had been in terrible pain and suffered panic attacks, even having one during her treatment that day. But I couldn't feel the happiness for her like I should, because the sadness for my dad overwhelmed me and took over my emotions.

I sat and smiled at her, wished her much luck, and said all the right things, the whole time struggling not to let the tears start flowing. If they ever start, they are hard to contain and get under control. I try really hard not to cry in front of Ed in public. It would make him cry and we would be two soggy messes!

When we left, we bid Glenda goodbye. We heard her story of pain and triumph, she heard Ed's story of struggle to remain as normal as possible...what little bit I could tell between her happy outbursts. She was too happy to feel much empathy for him, and I was too sad to feel much happiness for her.

But I vowed to feel happy for her 'tomorrow', after I got past this day. It's not that it was a particularly sad day, no terrible news or anything. It's just hearing someone say 'I am finished with treatment', or 'I am cancer free', may not be something we will ever hear for him, so it's hard to celebrate at that moment because of that realization.

But I promise, I will be happy for you. Tomorrow.

Chemo Treatment No. 14

Ed had chemo treatment number 14 on December 2, 2009. Some highlights of this visit with the Physician's Assistant, Meredith, and chemo treatment are as follows:

*Ed weighed in at 187 lbs. He lost 3 pounds since his last visit two weeks ago.
*His blood pressure was a little lower than the last visit, still in the 'excellent' range.
*His blood work was all normal and good, except for the levels controlled by the
medication coumidin. Meredith said his blood was a little thick, so she increased his
coumidin from 1 and half caplets alternated every other day with 1 caplet, to 1 and
half caplets each day. Meredith said that increasing the coumidin dosage would reduce some of the swelling in his legs.
*We told Meredith that Ed had a 'tender spot' on his right side, that could be a
bruised rib from a fall he took a couple of weeks ago. She checked it out and said
the spot was too low for a bruised rib, but felt he had bruised the area. She said
she didn't feel any abnormalities in the area.
*Meredith noted once again that exercise might help Ed gain strength and mobility.
*Meredith informed us that Dr. Splichal had made notes in his chart that he wants Ed to receive
four more chemo treatments, after the one he would get this date, and have another MRI,
and then perhaps take a break from chemo. She said Ed needs a break in order to let his body
build up some strength. She did not say how long the break was. I have to remember to ask this
next visit.

The chemo treatment itself was uneventful. The nurse was able to get the IV started with the first stick, though she did put it in the crook of his wrist (on top) and he had to hold his wrist just right to keep the drip going at a nice steady flow. The biggest obstacle Ed and I run into during the day at chemo is not getting him into/out of the car, not the long waits to see doctors or get chemo started, but the trips to the bathroom. It involves getting out of the chemo chair into a wheelchair, remembering to unplug the IV pump, and Ed holding onto the IV pole and pulling it along while I am pulling/pushing him in the wheelchair, and trying to hold the restroom doors open while pushing him and the IV pole into the restroom without pulling his IV needle out, or tipping over the pole, or running into anyone, and without the door slamming on him or me, and then making his wheelchair and the IV pole all fit into the bathroom in such a way he can get to the toilet. You would think the cancer center would design the bathroom doors to stay open by themselves, or at least provide door stops. If you are lucky, a mobile patient or an extra kind nurse or aid will notice your struggle and will come to your aid by holding the door while you wrestle with the wheelchair and IV pole.

But if the worst that happens is one of us gets a door closed on us, I guess we are doing okay. And, I can certainly use the workout it gives me.

On this visit, we met a lady who had had colon cancer. Her doctor discovered a mass on her colon after several unsuccessful attempts to clear up a kidney infection. She said they removed a foot of her colon and she was taking chemo as a precaution. She said the chemo treatment had made her so sick, that she had thrown up the first time in over twenty years and that she'd had diarrhea for a week or more. She actually wasn't in for chemo this day, but to get a bag of fluids because of dehydration.

Ed is very blessed that he has had very little nausea and/or diarrhea.

We had a nice visit from Sarah, Ed's former patient rep (she has a new job there now...something to do with insurance claims, I think). It is always nice when any of the employees at the cancer treatment center takes time out of their busy days to just sit and talk about 'normal' life and stuff. She is a very sweet girl and we enjoyed our time with her.

We will be going back for Chemo Treatment No. 15 on December 16. Counting down to that next MRI. He really needs extra special prayers during this time, for the slowing or stopping of the growth of the tumor. If he is going to take a break from Chemo, we need for that tumor to stop growing and even reduce some. Please say an extra one for him today!

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.