Sunday, February 27, 2011

Sunday Morning

Hello everyone. It is Sunday morning, and since we don't go to Church until 1:00, I have plenty of time in the morning to do rather than wait till tonight, I decided to write now. I am hoping to go to our whole block of meetings today--which is 3 hours. Each Sunday I have added another hour, and hope to be able to do that today. It DOES make me tired...but I am building endurance! Yesterday I went to our Church women's conference, and was there for nearly 3 hours. I loved being there, but was pretty wiped out in the afternoon. When we asked the surgeon about how much I slept, he said that would continue for 3-6 it made me feel like I wasn't totally abnormal. I am sleeping well at night--and that is such a blessing to be able to do that. I am so glad to be back sleeping in my bed. :)

Let me tell you what I discovered last week about my eating. I think I've finally worked out a workable routine for myself. I really can't eat the normal 3 meals. I get too full and too bloated, and really don't feel very well when I do that. I can't lie down (which is what I feel like doing), because then everything comes right back up. So now I am eating very small portions more often, and that seems to be working for me. They wanted me to eat regular meals, and then portions in between, but I was not hungry at all for any kinds of snacks. This is working better for me. I feel better. I know I'm not getting enough calories in, but at least I am enjoying the food more, and eating more often. What a unique position to be in--to be forcing yourself to eat--isn't that crazy? Well, that's about it from here--I'll just hope that I can make it through all my meetings today. Good days to all of you, Louise

Friday, February 25, 2011

Some random thoughts on precious things...

Last night I went out to dinner in Mesa with Spence's family. We really had a good time, and I got parts of other people's dinners, along with having some clam chowder. My father-in-law loved seeing me eat--he's had me at some meals where I haven't eaten anything. He has been such a great cheerleader to me during all this, and he always had great faith that things would all work out. Isn't it great to be around people that are so positive? (and who have so much faith).

I just found out that a very dear friend of mine has cancer. I am in denial, much as I was when I first found out about me. I hope that I can do anything to help her, because she has been there so much for me. Maybe having experiences like this helps to remind us of how much we need to support and help each other--and that makes it all worth it...just to be more aware of other people's suffering, and to do whatever we can to help and love them. People are so precious--time is just too short, not to tell them how much they mean to us...and to do all that we can to make their own personal roads that much smoother. I am so grateful that we don't have to make it through this life alone, and that the loved ones around us can share our joys and sorrows. I am also so grateful for prayer and for the love and concern that we feel from our Heavenly Father and from our Savior. May we each take time this day to reach out in love and compassion to all those around us. Sometimes just a little thing that we can do will mean so much. With all my love today and always, Louise

Tuesday, February 22, 2011

Back to bed...and it's a good thing!

I am not sick in bed, but for the last two nights, I have actually slept in my bed. Ever since I got home from the hospital, I have been sleeping in our recliner in our room. It just gave me more flexibility during the night. I tried one night of sleeping on the wedge in the bed and it was just too stiff and uncomfortable to me. So then the recliner just worked better. I could pile on blankets and have enough pillows to keep me elevated. A couple of days ago I felt like I could try my bed again. Since I have my stitches out of my side, and feel more comfortable sleeping on my side (at least at times), it has worked out well. Getting in and out of the recliner at night wasn't always the easiest thing, but it worked out ok. Spence now gets his recliner back so he can watch the news!

Spence worked very hard outside on President's Day. I folded laundry and read, and worked on some Scout things with my son, Brady. On Sunday I was able to go to 2 hours of church (I'm increasing it each week by one hour). I was much less exhausted this time of going than I was last I hope that means I am gaining more energy. Someone told me that I didn't look as pale this week--so I hope that's a good sign also.

We got the news last week that our son, Brian, and his wife, Keri, are expecting their second baby. We are so excited. With that one and Emily's due in May, we will have 3 grandchildren--I can't believe it!

I'm just going to say again how thankful I am to be done with the feeding tube. It was really uncomfortable and pulled on my stomach (or intestines--we're not sure what part of the body we're talking about now!) and caused me some pain. I am also thankful to eat regular food--I love the tangelos from our tree. I enjoy being able to keep things down! :) Spence is especially thankful that I can eat again. I am even doing better swallowing pills!! So that's my report for right now. I was going to go to a church class this morning, but things didn't quite work out. Thanks again to you all--I pray that I can support you like you have supported me. Much love always, Louise

Friday, February 18, 2011

A Family Funeral

Today I went to the funeral of our cousin, Ed Boyd. He had many health issues over many years, and suffered much. However, his family is full of faith and hope and were so complimentary of the way he handled all that suffering. They said he never complained--I turned to Spence, and said, "You'll never be able to say about me, will you?" I am just blown away by people who go through so much and are so patient through their suffering.

One of the things that was amazing about Ed and his family--in spite of all that they were going through, we often got calls from them about how I was doing. It is not easy to look beyond your own situation when it is so critical and heart-wrenching, but that's exactly what they did for me. Each one of their family members that I talked with today was so genuinely concerned for me and so interested in how I was doing. What a lesson for us all to learn--to go beyond ourselves when we are hurting so much. That is not an easy thing to do. I was very touched by their sincere concern for me.

At the funeral they mentioned their oncologist several times...and the wonderful doctor that he is. At the end of the funeral, they called him up to speak, and I was so impressed. In fact, I was ready to switch oncologists. He was so warm and caring it was unbelievable. That is a trait that not every doctor has. He talked about Ed having esophageal cancer, and how he went through the chemo and radiation. It was a little hard for me to hear all that, because it hit so close to home. Still, I was very touched by what he said, and talked to the doctor afterwards. So, all in all, it was a very good experience for me--a true celebration of Ed's life and many wonderful tributes about the influence of one good man. So...onto the weekend, and hopefully another time at church. Take care, Louise

Thursday, February 17, 2011

Hooray--I am FREE!

HOORAY--I no longer have a feeding tube--is that the best news ever? I am so excited, and was just so grateful and happy after seeing my surgeon, Dr. Perry. Last weekend I had discovered some stitches that had never been taken out, so he took those out too. The whole thing was a little unnerving and temporarily painful...but it didn't last long, and now I am no longer attached to my tree, and my yucky formula!! Spence was there, so I could squeeze his hand when it got a little painful--how blessed I am to have him by my side. He has made such a difference. The doctor was actually more personable than usual, so it was a good we didn't have to travel down to his office by Good Samaritan Hospital--he actually has one right here in Scottsdale. It was all good. So now I am eating on my own...and need to keep my calorie count up. I'm up for the challenge! :)

The last couple of days I have had some more energy. I haven't taken a morning nap either morning, and I have done a little more around the house. Today Brady and I took a longer walk around the neighborhood, so that was good too. The roofers are still here, still pounding, and that could be one of the reasons that nap-taking isn't quite as easy! It has just been a happy day. This feeding tube was much more painful to me--it really pulled on my skin and got kind of grotesque and bloody. Next week I could actually go swimming...if it was warm enough. Thanks for all your kind thoughts and encouraging words. I have the most wonderful friends in the world. Take care, and have a good Friday. Love you, Louise

Wednesday, February 16, 2011

The rebel patient

I have a confession to make--I am a rebel patient. In other words, I'm not a very patient patient. Just ask Spence--he'll tell you. I am terrible about taking medicine. I hate anything that I have to drink, and make quite a big deal (I guess I must really grimace when I take it) of having to drink anything. For so long, I haven't been able to take pills, and now that I can, I still have problems swallowing some of them. I think part of it is in my head from all that time of not being able to keep anything down--I still worry that I will be able to.

Earlier this week, I couldn't stop from sleeping. It was like I had a sleeping sickness. I've felt that way with the C-Dif before, but I've been taking medicine for a while, so that shouldn't be the problem. We even have guys here working on our roof, and I can sleep through all that pounding--I am pathetic!! In the last couple of days, I've tried to stay up more--I'm even doing a few things around the house--some wash, some dishes, etc. It makes Spence feel like he's not doing everything himself. (he does get help from the kids, but still ends up doing a lot of stuff himself.)

They are still trying to balance my cumadin levels--I guess it's a pretty tricky thing. However, now when we go to have blood tests, we go to a much smaller clinic that no one knows about--that 3-hour wait was just TOO long! At this one, they get us in in about 20 minutes--it's great.

Tomorrow we go to see the surgeon again...and hopefully get my feeding tube out. For some reason, this one (different feeding tube) has given me more problems...and hurt more. I am ready to have it gone--I just hope I can eat enough to keep me going. I still think it's funny that I have to worry about getting more calories--since when has THAT been a problem. Well, have a great day--thanks for reading. Love you all a lot, Louise

Sunday, February 13, 2011

Back to Church...finally

Well, I finally made it back to church today. It was so nice to be there, and be among so many people that I love. Several of them read my blog, and were very much up to date with what was happening with me. There are so many people there that mean so much to me. Several commented on the miracles that had come to me. There is no denying that, but I attribute those miracles and my healing, in great part, to faithful people like them who have exercised so much faith in my behalf. They are definitely a strength to me. I loved being there to partake of the sacrament. Spence and Brady have been making sure they have brought it to me when I was home. However, it was nice to be able to sing the sacrament song before taking it...and feeling the spirit that comes from the music. After being hugged several times, I was exhausted, and ready to come home for a nap. I was going to go back for a child's baptism later this afternoon...but I just wasn't feeling great.

That has been the story of my life for the last few days. i feel a little sick to my stomach, and then I'm just tired. I know that I need to keep plugging along--just still hoping for an increase in energy. Until the next post, know that I love you, Louise

Friday, February 11, 2011

Coming along one baby step at a time...

Spence says he's going to have to take charge of the blog, since I am just not consistent enough in writing. My life doesn't change that much from day to I just give you updates. I am doing pretty well. Today Brady and I walked around our cul-de-sac twice--that's pretty good for me. Today was a better day for me because I wasn't gone as much as yesterday. I only went out once with Kelsey who took me to get some frozen yogurt--it was delicious!

Yesterday I had to have blood work done to see how my cumadin levels are (regulating how thin my blood is). Then Kelsey took me down to meet Spence and we had lunch at Subway. I had some soup. Then we went to the GI doctor. He was really nice, and spent time helping both of us. We talked about my C-Dif, and the flagyl I'm taking for that. He is going to keep me on it for quite a while--I just hope that the C-Dif will finally leave my system. He was pleased with how I look. He is still in amazement that I got cancer--see, you just never know.

On the way home from the doctor's, Kelsey and I stopped to get some by the time we got home, we were BOTH wiped out. I still have to pace myself, and try to not put too much into one day. One baby step at a time...

My eating is going great. However, I still can't eat much at one time. I get feeling bloated if I eat too much, or if I'm on the feeding tube for too long. I love being able to eat salads and fruit again. I just have to be careful. When they did the surgery, they took out the valves to my stomach and my esophagus. That makes it interesting if I happen to lean over after I eat--sometimes I can feel all that food coming back up! It doesn't, but it's still a weird sensation. I am able to be alone during the day--I read, crochet, and try to work on my computer, and of course (as you well know) take my naps. Have a great weekend!! Love you lots, Louise

Tuesday, February 8, 2011

Coming Out at the Outback

I am back to the land of the least for right now. Spence is right--that C-Dif is nasty stuff, and I hope to be rid of it once and for all. He has given you the details, but I really do feel miserable when I have it. If you ever hear of someone having it, be sure and give them lots of sympathy...and hope that they will be given the proper medicine. We go to the GI doctor on Thursday--I wish he could give me a lifetime guarantee that I will never get this again.

Last night was the first time I ventured out into society. Since I was too sick to go out for Kelsey's birthday on Saturday, we went last night to Outback. It was great! I had one of their dinner salads, and ate some other things from others' meals too...and was overly full and bloated afterwards...but it was such a great thing to be out of the house, and to be able to eat. We had a great time together. I still have to watch myself so I don't get too full--but I think that will be the story of my life from now on. It was just so nice to go out with my family.

Tonight I went out again--this time to Church for Brady's Scout Court of Honor. It had been since Jan. 2nd that I had been there at church. It was so nice to be there. The Court of Honor was very short and sweet...and then it was just so good to see people and visit with them.

I am also doing a few more things around the house--doing some laundry, working a little bit in the kitchen, and just being a little more proactive. I am determined to get better--I'm tired of being weak and tired. (I still take my naps though. :))Sorry that you have to keep praying for me. I AM going to get better!! Love you, Louise

Saturday, February 5, 2011

C-Diff Strikes Again!

Oh no, Spence is writing...its got to be bad news. Unfortunately I'm the designated writer when Louise is not up to it. And she is down again. What more does she have to go through? Anyway, for those of you who have been following this blog for a while, you will remember that Louise was the sickest when she got C-Diff three other times. Now she has it for a 4Th time. It is a very bad bowel infection that causes horrible diarrhea to strike on the average of about once an hour every hour of the day. All the cramping and nausea that goes with it makes life pretty miserable. You feel like you have extreme flu. You ache. You go hot and cold. Well let me just say that you are as miserable as you can be. How does a person get this plague? Most of the time it is because you have taken an antibiotic that kills the "good" bacteria in your colon and lets bad bacteria get through. People also get it after being in the hospital. However, Louise has been out 2 weeks and she has not had any antibiotic in a long time. I think, in her case, having had it 3 different times in the last 4 months, she just has this bug that never gets completely killed by the antibiotic. When she went into the hospital, she was still supposed to take this antibiotic flagyl, for another week. The surgeon, however cut it off. I can't believe it came back after a whole month of being off the antibiotic.

But come back it did in great force. Friday, at 2am it hit her hard. She has had the diarrhea and other symptoms non-stop since then. I called the surgeon and he said to take Pepto Bismol but if that didn't work we should take her into the ER at Good Sam today (to spend a whole day there for them to tell us it was C-Diff again). Last night she was so bad that I took another route. I called another doctor to kind of get permission to take the Flagyl again because we were pretty sure it was C-Diff. I have a whole bottle of it remaining. I got permission and he agreed I should grind it up and put it in her feeding tube because it can be very hard on the stomach. So I have been giving it to her for 24 hours and we are seeing the same results as before. Tonight she finally feels somewhat better even though the race to the bathroom continues, but not as often. She will have the diarrhea for 2-3 more days but will not feel as sick. And then it will go away after that. We will work with the GI doctor to put her on the only other antibiotic that will kill this disease once and for all.

Today is Kelsey's 18Th birthday and plans had to be changed for celebrating. We were going to go out to a restaurant and have Louise make her first appearance outside of our house and the hospital. But, plan B had to be implemented. Plan B stands for Back to Spence trying to cook a stake dinner for Kelsey and make it similar to a restaurant. I tried anyway.

Louise was also going to try to go to Sacrament Meeting tomorrow, but those plans have changed also. She has taken a few steps backwards. We are trying to hydrate her and get some food down her. She has eaten nothing (not even tube feeding) for 24 hours. Tonight she ate some of my scrumptious dinner so let's hope she can gain back some of those lost pounds soon.

Yesterday, between paudy trips, we went to the dietitian to get advice on how Louise can get more calories into her body by the time they take out the feeding tube in two weeks. We then went to the oncologist for the first time in two months. He examined Louise and felt like everything from a cancer standpoint looked in order. He was thrilled with the results of the surgery and the clean pathology reports on the extracted esophagus and the 6 lymph nodes taken out. He did warn us that the cancer could come back. For this reason he wants to examine Louise once a month for the next 6 months. He feels like if something does come back and it is caught early that there is much that can be done to fight it.

So there you have it. I'm sorry that you have to put up with my report one more time but Louise should soon be back at the keyboard, hopefully feeling much better.


Wednesday, February 2, 2011

Another recuperating day...

Things are pretty much the same around here. This week I've been by myself in the mornings, and done just fine. I do about the same routine--Spence fixes me some breakfast in the morning (usually toast and some pear sauce--today, even a little banana), and then I get on my feeding tube. When I'm tired of that, I take a nap...and then pretty soon Kelsey is home from school. The one thing that we worry a little about is me choking--with my new digestion "aparatus" (basically my new stomach and intestines), I need to be careful that I can swallow...and that I don't throw anything up. I have actually done very well that way...and am able to keep everything down. What a blessing that is! Tonight it was meat loaf, corn and a roll--and I ate quite a bit of all that. I think that Spence enjoys watching me eat more than anything! He hated it when I couldn't keep anything down, and just had to sit at the table. He is a great fan and supporter, and I appreciate him a lot.

I am still sleeping on the recliner, but last night I did take a nap in our bed. I have to be propped up quite a bit--again so that I won't aspirate. I got so full on my feeding tube (sometimes I get this bloated feeling), and I didn't feel like eating any real food for dinner. It's times like that when I wish progress could just be continuous, and that there were no setbacks...but I guess that's life. (plus that really wasn't too much of a setback)

Today was cold again (remember this is cold for Phoenix), so Brady took me out on the treadmill and I did a whole 7 minutes. I'm adding a little each time. :) A friend came by today. It always amazes me that I can get winded just by walking someone to our front door or standing for too long. I know that will get better too. :) Have a great Thursday. Love you, Louise