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!