Finally purchased a camera

Well I finally bought a camera and took a picture of the painting that I just finished. I delivered it Friday afternoon and the owners were absolutely overwhelmed. There is nothing more that I could do that would make Sam so proud; it really does give me a good feeling of accomplishing something and it really helps occupy some very lonely weekends. I think my next one will be of him. I think that will either make me or break me -

we'll find out.

Sarah Elizabeth is back in school and doing so much better; no pain whatsoever. I don't know if the Crohn's caused her gallbladder problems or not, but at the moment, she is doing good. Cindy should go back to work at the end of this month.

She is doing good also.

I was disappointed to read of some new cases of cholangio on the blog site. It makes me so said to think of the journey that they will now have to travel - such a life changing event. I asked Sam one time what in the world I would do without him - he said you will be fine; you will just have a different life. I don't think he realized how different and difficult it was going to be.

Well I am not going to end this blog on a sad note - Spring is just around the corner and bulbs will be peaking their little heads through the ground soon. I am looking forward to Winter going away.

Love Betty

Good News

Sarah Elizabeth got to come home today from the hospital. I know she is doing better because she sent me an e-mail letting me know of the "Vera Bradley" items that she wants me to send her. Of course, I had to send Anna Katherine something for staying out of school and taking care of Cindy. All I can say is "money well spent".
I lost my stepfather "Sidney" two weeks ago; he and my Mother were childhood sweethearts and met again 17 years ago and were married - truly a love story. He was 88; she is 89 and lives in Tuscaloosa, AL so I will go and visit her on Sunday. Maybe I'll stop by Circuit City and buy me a new camera so I can post the picture of the painting on the blog. Don't hold your breath though - I absolutely hate learning how to operate gadgets; that was Sam's job.
All of you have a good weekend.
Betty

S.E. Update

Tim (Cindy's husband) just sent me a text message saying that they have removed S.E.'s gallbladder. Her labs need to get better before she can be discharged from the hospital. That is all I know right now. Sam absolutely adored this child; she was so very special to him. I really appreciate your concern and prayers for all of us.

On a little brighter side - before Sam died, I asked him what he wanted me to do after he was no longer here. He said I want you to paint and enter some art shows. Well I have just finished a portrait of a young lady with her riding horse (a commission). Believe it or not, it is pretty good - I even surprised myself. When I learn to operate his camera, I'll post it on his blog. He would be proud.

Sam's Granddaughter Sarah Elizabeth

It has been a while since I have posted anything to Sam's blog but I wanted to give everyone an update on Sarah Elizabeth. S.E. was diagnosed with Chron's disease when she was 7 years old; she is now 17. She is in Arnold Palmer hospital in Orlando, FL. She is jaundiced, has a stone in her bile duct and has pancretitis. Cindy, Sam's daughter, was just released from the hospital yesterday after having 8 inches of her small intestine removed; she has ulcerative colitis. I think most of you know that ulcerative colitis is a risk factor for cholangiocarcinoma but I'm not sure about Chron's. I think there are several on the site that have discussed how big of a role that genes play in CC. S.E. is a senior this year but has not been able to go to class for a large part of this school year but she has been able to keep up her school work at home. Please keep her in your thoughts and prayers and I will update you on her progress.

Betty Johnson

Sam's Sunset
I read somewhere that grief will make a new person out of you it it doesn't kill you in the making. There is definitely some merit to that statement. I am trying to go on which is what Sam would have expected of me but it is so hard.

I wanted to share the sunset that took place the afternoon that Sam died, August 10th. I had this funny little thing that I would talk to God about; it is childlike and silly but I use to always look in the sky for two jet streams; that was God talking back to me telling me that Sam was going to be O.K. Well look at this sunset; it speaks for itself. I'm trusting God with his word.

My prayers are still with all of you. I read everyone's blog everyday. Its the first thing I do when I get to work every morning. Love you all.
Betty

Update on Sam
I didn't realize how many people kept up with Sam and read his blog until I slowed down with the updates. I have had so many calls. Sam continues to struggle each day; his quality of life certainly is not good and that is very hard for Sam to handle. He has just done and accomplished so much in his lifetime. He will be the first to tell you that he has had a very good life. Our pastor, Art Luckie, dropped by yesterday afternoon and he still couldn't believe that Sam designed and drew the plans for our house so that practically every room had a view of the water. Art asked me if I planned to stay here in Demopolis and I told him absolutely. Even though I don't have any family here, I don't think I could leave something that meant so much to Sam. It is just too much a part of both of us and I will cherish all of the memories. Sam use to tell me when I was afraid to do something like skiing barefoot or some of his daredevil things that he use to enjoy like boat racing - " you are building memories that you will have with you forever". He loved making memories and loved to talk about them.

Sam had a very rough day yesterday. He was running a very low grade temperature and having difficulty breathing. Hospice had tried several times to get him to use some oxygen and he finally agreed. It is hard to imagine someone that could run 15 to 20 miles a couple of years ago to be on oxygen now fighting for his life. Life sure can be unfair sometimes. I read a tribute to Mother Teresa last week and she was quoted as saying "I know that God will not put more on me than I can handle, I just wish he didn't trust me so much". I'm about to feel the same way.

This has been an unbelievable nightmare for the past 23 months and I don't know how much longer Sam has. He is incredibly strong and unbelievably stubborn - he still insists on climbing the stairs every night to take his shower. He doesn't like the one in our master bedroom. So last night he climbed the stairs and I followed with the oxygen. We make a good team!!

My prayers are still with all of you and especially with Dan and Chris as they are at a stage where these difficult decisions have to be made pertaining to quantity vs quality of life. It's not easy. Kelly - glad you are home and sleeping in your bed. Hang in there!

Difficult Days
I find it very hard to write anything anymore. When I read Chris Peterson's blog this morning about Dan, I could almost copy it and post it about Sam. My heart goes out to both of them because I do know exactly the emotions that they are feeling. I can't imagine facing anything in life that is more difficult than this.

Sam becomes more confused everyday and that is so hard to watch. I have never known a person that was so disciplined or had so much control of mind over matter but that has been taken away. I too thought it might be the medication but I am really not sure anymore. He is taking 8O mg of Oxycodone four times/day but Hospice tells us that other cancer patients take so much more than that. He was alternating 40 mg and 80 mg but that wasn't managing the pain; it seems to me that when we increased the dosage, his confusion did get much worse.
He hasn't eaten anything in two days; when he doesn't eat, I don't eat. It's hard to find much pleasure in eating or anything anymore. We still need everyone's prayers. I know that God will give us the strength that we need; I'm sure of that.