This is the First Day...

...of the rest of your life.

I know you have heard that saying before. I think the phrase was made quite popular years ago in a cereal commercial - maybe Total cereal?

(Picture: Ed resting in bed with cat Longlegs resting on top of him!)

Ed had an MRI of his brain on Monday, January 18, 2010. My office was closed for Martin Luther King Day, and I was able to help my brother get Ed to the Physician's Imaging Center in Athens, Georgia. He is now unable to walk and unable to stand unassisted and unsupported. The imaging center was unequipped to handle someone as disabled as he is, so me and my brother had to put him onto the MRI table and assist the technician in getting him situated to be able to have the test done. She told us that he would initially be inside the machine for 20 minutes, she would then bring him out of the machine to start an IV to inject dye, and he would go back into the machine for another five minutes. I determined he would be in there about a half hour. After 40 minutes I was beginning to get nervous. But she came to get us soon after that.

Of course, you do not get any type of results at the time of the MRI. Even if the technician does see something, or knows something, they are not allowed to discuss the readings in any form or fashion.

With today's technology, we are able to get these results so much sooner than ever before. The next afternoon me and my brother again loaded Ed into the car to head to see Dr. Splichal, Ed's oncologist, to get the results of the MRI. I think I prayed all the way to his office, as I'd been praying all the days before. Please God, let Ed get good news.

Ed had already decided to take his break from chemo, two chemo treatments earlier than planned, due to the overwhelming toll the drugs were taking on his body. He has become so weakened by the chemo, that his right side is almost totally useless. He cannot lift his right arm some days, and the hand does not cooperate either. If you place your hand in his right hand, he can squeeze your hand, and quite hard. But it is not helpful in such tasks as holding on to anything to lend support or in feeding, bathing, etc. His speech has worsened to the point that there are few words he can say that can be understood. Thank God, his left hand is still functioning.

We did not have to wait long to see Dr. Splichal. He came in and greeted us as usual. And then he just said it. The tumor has grown.

He explained that the tumor had grown enough to once again push the mid-line of the brain a half inch off center. He said that Edward had outlived his expectations for him, that they never believed he would live beyond six months after the surgery to remove the tumor. He stated that additional chemo would only worsen Ed's weakness and he felt like it would not help him anyways. He then told us that due to the aggressiveness of Ed's tumor and the size of it now, and the deteriation of his body, that he expected Ed to succumb to the brain cancer/tumor anytime between two weeks and two months. He said to stop giving him coumidin, that he was in more danger of bleeding to death than of a blood clot. He also said to up his steroids from 1 mg a day to 16 mg a day to reduce swelling in the brain.

I know me and my brother were momentarily stunned, and sat in silence. Then my brother asked him something, and Dr. S repeated his prediction. Then he told Ed he had fought hard and good and shook his hand. Ed was smiling up at him. Then Dr S shook my brothers hand and I hugged Dr S and thanked him for trying so hard to help Ed.

Before he walked out of the examining room, Dr. S told us there would be no follow up visits, but of course to feel free to make an appointment if we needed to come back to him. That seemed so final.

We held it together until we got in the car. Then I had to bury my head in the back seat to try to cover up my sobs. My brother put on his sun glasses to try to hide the tears coming down his face. I don't know if Ed knew we were crying. He was quiet all the way home.

Once home, we got Ed out and took him inside, greeted by Mama who wanted to hear the 'good news'. But the news was not good and she did not take it well. Her crying and questions really brought it home and finally, Ed cried too. I am not even sure he was totally aware of what was going on until we got home and we were all crying.

As usual, Ed was trying to console us; trying to make us feel better and feel like it was all going to be okay.

So. How do you think you would feel if a doctor gave you an estimate of how much longer you were going to live, and it really wasn't that long? I don't know how I would feel. Do you think to yourself, 'Today is the first day of the rest of my life'?

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)

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!)

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. 3

(This is not one of the side effects Ed has experienced from taking steroids for brain healing and swelling).

I had the pleasure of taking Ed in for his 3rd chemo treatment yesterday (July 1, 2009). My brother advised me to get us to the Cancer Center early in order to secure a 'private' room. However, anyone who knows me well, knows I am rarely on time, what less early.

We were on time, but unfortunately, Ed has to see Dr. Splichal before receiving chemo and I have known Dr. S to be 'on schedule' only once since Ed began seeing him late last year. No hard feelings for Dr. S, I know a lot of unforeseen things happen in a cancer treatment practice.

Our appointment was for 8:20am, and Dr. S came in to see Ed finally at about 9:15. Here are the highlights of this visit:

*Ed weighed in at 185.6 lbs. Up one pound from three weeks ago. A total weight gain of about 25 pounds since last November.
*His blood pressure reading was 80/100. The bottom number is up, but nothing to freak out over.
*His blood work was good.
(Dr S answered the following questions we had)
*Is it okay that Ed is urinating a lot - to the point of excessively (getting up 3 or 4 times during the night and still waking up with a soaking wet 'pull-up'. Yes, this is okay and desirable. He drinks a lot of liquids during the day to combat dehydration and to flush the kidneys.
*What causes his ankles to swell, is it dangerous, can anything be taken or done to reduce this swelling? The ankle swelling is probably caused by a nutrient (or mineral) being drained from his body by the cancer. The nutrient (cannot remember the name of this nutrient!!!) is being depleted and it is needed to help the body return liquids from the extremities back to the main body. It is not particularly dangerous, only uncomfortable and startling to look at. If any swollen areas become hot to the touch, painful or red and angry looking, then it could be a problem (such as indication of a blood clot). Neither heat nor cold compresses help this type of swelling. A water pill or other fluid evacuating drug would not help this type of swelling either. Suggested wearing tight hose purchased from drug store and elevating the legs.
*What causes the sensation of water trickling down the forearms and shins? Dr S seemed a little perplexed by this. He said he didn't think he'd heard of this before but was sure it is caused by either the location of the brain tumor or side effects of steroids and/or chemo.

Dr S. decided to reduce Ed's dosage of steroids from three 4 mg tablets a day to two 4 mg tablets a day. He said he was concerned that the dosage and the length of time taking the steroids would effect Ed's sugar levels...meaning he could develop medically induced diabetes. Other side effects blamed on the drug since he began taking them in November of last year...red 'blood blotches' appear on his arms, hair growth all over his body including knuckles of his fingers and toes, weight gain, muscle weakness, tingling in arms and hands. Dr S. is hoping to slowly wean him off steroids. Very good news...since Ed's last visit to the neurologist three weeks ago and subsequent medication adjustment for seizures, Ed has not had a seizure for exactly 4 weeks now! Hallelujah!

After Dr. S finished up with Ed's check up, we headed to the other side of the building to get set up for chemo. I fully expected to be at the center a good 5 to 6 hours from that point, but it ended up only taking about three hours. More details about Ed's 3rd chemo and my FIRST experience with it (as an onlooker) in my next post.

First Side Effect Appears

(In this pic with B2, you can't tell Ed has brain cancer!)

I got a call at 7:10 this morning...my Mom was upset and crying. She said Ed's tongue was bleeding. She said his tongue was red all over like he had been sucking on a red hard candy, but he had had nothing to eat or drink yet. She said they dabbed it with a wash cloth and it came away with blood on it.

I told her I would leave right away and come get him and take him to the doctor, but she suggested I call the doctor instead. I placed a call with the answering service for the doctor on call at 7:14am and the operator said I would get a call back.

I talked to Mama more and she said there appeared to be two 'splits' in Ed's tongue and upon shining a flashlight at the back of his mouth she could tell his throat was angry red and irritated in appearance. She said that Ed said no when she asked if it was painful...in either of the tongue or throat. She also said that this was difference in appearance from the mouth fungus, thrush, that he'd had before. It was not yellow and crusty like the mouth fungus.

I went on to work and by 8:00 am I still had not got a call back from the doctor on call from the staff at the North East Georgia Cancer Care Center. I decided to call the center and ask for a nurse. I spoke to the very lovely and helpful Dawn. After listening carefully to my description given to me by Mama, she explained that this is actually quite common in cancer patients. I told her my Mama had started having Ed wash his mouth with Magic Mouthwash and it was suggested by a family friend who's mother and mother-in-law both took chemo, to wash his mouth with a solution of water, salt and hydrogen peroxide. She agreed both those were good for him and do the salt water solution after meals.

Ed had not wanted to eat breakfast because of the blood, but after washing the blood out his tongue immediately started to look better, and after looking at it for himself in the mirror, he agreed to eat. The nurse at Cancer Care urged us to keep him eating and drinking plenty of fluids.

Later in the day, Mama reassured me Ed was fine, feeling better and enjoying a visit from friends. Thank God, he and we have survived yet another bump in the road on this journey with brain cancer.