Monday, April 30, 2012

Monday Chatter

I've spent most of today resting since I overdid it a bit yesterday. Didn't do anything terribly strenuous, but I was on my feet a lot, and busy.

We took Mom some lunch and I cleaned her kitchen, unloaded and reloaded her dishwasher, and made her some brownies. We were over there for quite awhile in the afternoon.

Then I made oatmeal cookies when we got home. I had been promising the kids that we would bake for a week, so I had to do it! Those cookies are already nearly gone. I think we were all hungry for homemade cookies.

I helped Reece with his journal writing and book report. He drew the cutest elephant for his book report. He has to write a sentence about it, and tell whether he liked the book or not and whether he would recommend it to a friend. He's so funny. He always circles "no," that he did not like the book and "no," he would not recommend it to a friend. But I know that he likes the books!

His journal entry was about Sister and Katy. He has to write 3 sentences about whatever he wants to write about, and draw a picture for an illustration. He drew Sis and Kate and wrote that we have two dogs, they are Sister and Katy, I love them. :o) I love his journal entries.

My skin is peeling and feels so tight. I'll be glad when the graft vs host disease disappears!

Josh is making hot wings for dinner, and they smell so good. My stomach is growling. Hope you've enjoyed your Monday!

Sunday, April 29, 2012

The Bikers



Josh's birthday is not until next month, but he got his birthday present early. He wanted a mountain bike, so we made a deal that he will do some work for us to help "pay" for part of it. He got a little seat for the girls so that he can give them rides. I like that they are up front with him, rather than sitting behind him.

Aubrey and Camryn have birthdays next month too, and Aubrey will probably get a bike for her birthday so that she can ride with Daddy. Reece's birthday is in June, and I'm pretty sure that's what he will want, too. Cammie and Gina can stick with riding on the little seat on Daddy's bike for awhile.

Don't they look cute in their bike helmet? :o) Josh needs one too. A bunch of his friends also have mountain bikes, and they like to go ride off-trail together.

Reece is too big to ride in the little seat, but was content to simply watch the riders and wait for them to come back around the block. :o)
Happy trails!

Friday, April 27, 2012

Almost Normal Life

I got to see the CT/PET scan images for myself yesterday at the BMT Clinic. Dr. O showed me the last one, done in February, that showed those little spots lighting up near my arm pits and in my groin. They were probably mantle cell. But in the new scan, those spots are gone. Only things that should have been were lit up. My new immune system took care of them! I'm so excited that it's working.

I'm still battling the gvh (graft vs host), but it is better. Dr. O said that sometimes it takes a long time to get it under control, but he was very encouraged that mine is better after only 3 days on the steroid. He told me that he is "ecstatic" with my response to the transplant and all that has happened afterward. That made me happy.

A few days ago I had Josh buzz my hair. It is coming back in, but I looked like one of the baby wrens, with feathery hair sticking up all over my head. Now it's all one length (extremely short), but looks much better. I went without my headcovering for most of the day today. I've stopped caring whether people see my bald head. :o) I found a cute hat at WalMart, though.

The babies on the patio, btw, have flown away. We were hoping to see them fly, but they did it when we were not looking. I'll miss them.

I was really busy today. It was a school holiday for the Battle of Flowers (only in San Antonio), so Reece was home. He came into my room looking for me around 7:20 and I was already up and about. I made chocolate chip pancakes for breakfast. Then I cleaned the kitchen and folded towels.

Josh, Reece and I went to Gran's today, where I made her some lunch and a pitcher of tea, emptied her dishwasher, made her bed, gathered up her trash, emptied her vacuum cleaner canister, etc. etc. She enjoyed having Reece there. He was showing her all kinds of angry birds made of PlayDoh or cut from pictures. He even makes them out of wet napkins. :o) And he brought his Kindle to show her the Angry Birds in Space game. She gets such a kick out of him.

Ron only worked half a day today (Battle of Flowers again), so we went to WalMart in the afternoon. Reece went with us. I wanted some Bisquick to make strawberry shortcake, and we picked up a couple of new pillows, a movie for the kids (Bambi), some PlayDoh (we should own stock in the company that makes PlayDoh), a couple of cake pans and some other stuff.

The strawberry shortcake was yummy.

Tuesday, April 24, 2012

Fantastic news!

Dr. O just called to tell me that the CT/PET scan results show that I am in "complete remission!" Whoo Hoo!

He said now we just have to focus on getting rid of the GvH. They put me on prednisone and Noxafil (posaconazole) to help with that, and he said that when I go in on Thursday we may try a different steroid that just coats the stomach, then goes on through, so it doesn't have the uncomfortable side effects of some other steroids. I already feel better, after only 2 doses of my new meds. I'm sure we will be able to get it under control soon.

Thank you all so much for your prayers and support. I'm excited, but cautious after going into remission after my first stem cell transplant and then having the mantle cell come back again. I'm praying that this time it will last. Please pray for that with me. Thank you!!!

PS: Johnnie, thank you for saving my life. I love you!

Sunday, April 22, 2012

Itchy

I have a doctor appointment tomorrow. This rash is driving me crazy. Not sure what they can do about it, but hope they can do something quickly. I look like I have a sunburn on my torso, and it's kind of sore and very itchy. Not a happy camper here. I've been using the cream the doc prescribed, but it doesn't help much.


The weekend was quiet and nice. The weather's been beautiful the past week or so. Reece has been in the pool nearly every day. There is nothing that makes his little face light up like jumping into the water and swimming.


I've been having trouble posting for a couple of days. Blogger is messing with the format and sometimes I can't even get the "create post" page to show up. Let me see if this one posts.

Thursday, April 19, 2012

Good News/Bad News

Good news! My hemoglobin was 11 today. Last week (when they put me in the hospital) it was only 6. If it's under 8 they give a blood transfusion. I got 3 units last week. So, I'm holding onto my red blood cells now; in fact, they are increasing. The procedure they did in the hospital (endoscopy and cauterization of those tiny little sores) worked and the internal bleeding has stopped. I've felt so much better this week, and had much more energy.

The bad news is that I have developed some graft vs. host disease, which has manifested as an itchy rash on my skin and a sore mouth. Dr. W said today that he believes the skin rash, sore mouth and irritation of my esophagus and stomach are all caused by graft vs. host. They wanted me to have some of that to strengthen my new immune system, but not too much. They sent me to dermatology today, and the doctor there took 2 skin samples to biopsy. He prescribed a cream for the rash. My doctor (Dr. W today; Dr. O is out of town) prescribed a mouth wash. They may put me back on the tacrolimus when Dr. O returns next week. I have to go back on Monday.

Tomorrow I have a CT/PET scan scheduled for 7:45 AM to see if there are any signs of the cancer. Prayers much appreciated!

Wednesday, April 18, 2012

Wednesday With The Grands

The kids and I spent most of the afternoon outside today. It was a beautiful day. There were birds and butterflies everywhere.

Josh and Cyrise went shopping, then grilled chicken fajitas for dinner. Josh also made stuffed jalapenos wrapped in smoked bacon. Yum! My mouth's been a little tender, but Josh cleaned the peppers so well, removing all the seeds and ribs thoroughly, so they were not very hot, but still very flavorful.

The little girls have really crazy hair. Both of them have tons of cowlicks and their hair is very fine, especially Aubrey's. I like to put their hair in braids or ponytails; they look so cute. Their mommy wants to grow their bangs out, so even though my fingers were itching to get the scissors and trim them, I didn't. Instead, I'm going to get them a bunch of cute little barrettes. Cammy will leave her braids alone, but Aubrey almost always takes hers out after a short while.

Reece got a haircut yesterday. His mommy gave him a buzz, and he looks darling. He had a red towel wrapped around him this afternoon, and looked like one of those Chinese monks who wear red robes. :o)

We still have baby wrens in the wren house on the patio, but the ones on the front porch flew away. I'm sure the others are about ready to fly, too. The parents are busy all day long bringing bugs and worms for the babes. The male has stopped being afraid of us, but the female is still a little cautious.

Reece and I worked on his homework outside. He has to do a "book report" every week, and an entry in a journal. I love the pictures he draws to illustrate the books. Later we finished up his journal inside and I discovered that Aubrey had gotten hold of his book report page and scribbled all over it. Grrrr. I erased what she did as much as I could and put a little note at the bottom of the page so the teacher would know what happened.

All in all, it's been a pleasant day. I have to go to the clinic tomorrow for labs, so I'm glad I was able to have lots of time with the grands and be outdoors today.

Sunday, April 15, 2012

Tornado!


Last night I was watching the weather channel, tracking the tornadoes. My sister Johnnie and her family live in Wichita, and we have other family there, so I always worry during tornado season.

Sure enough, when I texted her Johnnie and her husband were in their neighbor's basement and tornadoes were all around them. The tornadoes seem to follow the same path every year, through south Wichita. Last night a big one was spotted on the ground about a mile from where they live. I've wanted them to move for years! Preferably to Texas. :o)

We kept in touch until the danger had passed, and this morning she said their house had no damage, but there is damage all around them. I thank God they are okay, and pray for those who were not so fortunate.

(Video from Fox News).

Saturday, April 14, 2012

Home Sweet Home!

I'm home. Checked out of the hospital this morning. Ron was hungry so we stopped for breakfast at Cracker Barrel. I was hungry too, but knew I couldn't eat too much, so I just got a little bowl of dumplins and a corn muffin (and sweet tea). I'm supposed to eat bland, easily digestible food for the next few days.

The kids and I were happy to see each other.

Hope you're having a good weekend!

Friday, April 13, 2012

Little Gina Bean

Kelly took some cute pictures of Gina last weekend. Gina was sitting on the floor beside the table where Great Gran and the little girls were sitting, and there was some clutter in the background, including part of Great Gran's leg. Kelly took her favorite of the pictures and edited out all the clutter. I love the pic now.


More Hospital Adventures

Good news from Johnnie--her thyroid surgery went well and she's already home. The surgeon removed half her thyroid, so she won't have to be on synthroid or other meds. She said she is tired and sore. I texted her so she wouldn't have to talk. Thank you for your prayers for her!

They are keeping me in the hospital one more night. I had the endoscopy this morning. I don't have an ulcer, but I do have lot of irritation and little tiny bleeding sores throughout my esophagus and stomach, probably caused by the chemo and other meds. I was bad about taking my Nexium after the transplant, so that's probably why it happened. They cauterized some of the little sores, but some were too small, so they will put me on 40 mg Nexium twice a day, and some liquid pink stuff (not as thick as Pepto Bismol, but the same idea) four times a day to give everything time to heal. Moral of the story: take your meds exactly as your doctor says.

The endoscopy was a breeze. They put some anesthesia through my IV that was supposed to bring on "twilight sleep." I was out like a light, and woke up in recovery. I don't remember a thing.

Ron came about noon, then he went to take Mom her meds and make her some lunch. When he got back he brought me some lunch. I ate a little, but drank a large tea and a couple of hours later everything I had eaten came back up. I tried to go too fast after everything that was done to me. Hoo boy. Before he went home, Ron went down and got me a peach yogurt and a bottle of water, so that was dinner. So far it has stayed down.

The gastro docs are the ones who wanted me kept overnight for observation. I'll be glad to get out of here. You come in for one simple thing, and they find all kinds of ways to make things miserable. One nurse in particular.

Last night I was sleeping soundly and at 3 AM my (rather strange) nurse and the tech came in with blankets they used to pad my bed rails. They said it was for "seizure precaution." They had been giving me something through my IV to get my esophagus and stomach ready for the endoscopy, so I asked, "Does that stuff cause seizures?" They said no, that "they" said I had had a seizure a year and a half ago. I was astonished and said, "No I didn't." They just looked at each other as if to say, "She doesn't know what she's talking about." I've never had a seizure. I'd like to know who "they" are that said that, and I'm wondering if the night nurses sit around reading the patients whole charts and if they mixed me up with someone. Maybe it's something they're supposed to do, learn the history--I don't know. All I know is that it was irritating.

Don't irritate old ladies with cancer in the middle of the night, especially with something ridiculous. And I was finally falling asleep again around 4 AM when they came banging in again to get my vitals. Grrrr.

Sorry for the vent. The care here is exceptionally wonderful most of the time. But tomorrow cannot get here fast enough!

Thursday, April 12, 2012

Hospitals

My sister Johnnie, my stem cell donor, is in the hospital in Kansas today to have thyroid surgery. She will stay overnight. Please pray that she has a good outcome from the surgery. Thank you!

And I am also in the hospital again. I came in for labs this morning, and my doctor decided to put me in the hospital to see if they can figure out what is causing my low red blood counts. He suspects that I have an ulcer. Something is not right. This is the fourth week in a row that I've needed a blood transfusion. My count drops so low that I'm not really able to function.

So tomorrow morning they will do an endoscopy to check my esophagus and stomach. Hope I'll be able to go home tomorrow. Please send up a prayer for me, too. Thanks!

We are now in the new bone marrow ward, and it is very nice. Everything is new and shiny. :o) It's nice to see, in this new place, some of the nurses and techs I've had before.

Reece is not going to be happy that I didn't come home today. I'm certainly not thrilled about it either. But I am glad my medical team takes such good care of me.

Thank you again for your prayers!

Wednesday, April 11, 2012

A Half Dozen Cuties

This is the nest of little birds in the wreath on our front porch. There are six of them, and I don't know how they are able to fit in there!

Josh took the picture tonight with his iphone. Can you see them in there? They are so cute!

Sunday, April 8, 2012

Happy Easter!

He is risen indeed!

Alleluia!

Saturday, April 7, 2012

Beautiful Saturday

My sister Sandi has been here since Wednesday evening. She was out at UTSA on Thursday working at a job fair for her school district. It's been nice to have her here.

Aubrey and I had been planning a little Easter party, and decided to have it on Saturday so that Aunt Sandi could come. Gran and Kelly were also guests.

We gathered flowers for the party in the little field across the street.

We used my potting bench as a buffet table.

The kids enjoyed swimming. They've been in the pool every day for the past four days. It's still too cold for me!

The menu consisted of a meat and cheese tray, crackers, little bird nests made of chocolate, peanuts and chow mein noodles (filled with jelly beans or pink peeps), yellow cupcakes with chocolate in the middle topped with whipped cream, and strawberries with whipped cream filling. Kelly made us some delicious punch. It was fun.

We sat outside on the patio. The weather was absolutely perfect. I think everyone had a good time. I know I did.

Sunday, April 1, 2012

Watching Sick Babies

Ron and I have all four of Josh's kids this weekend while he and Cyrise celebrate their anniversary at the Coast. So far, so good. Reece and Aubrey are feeling okay, but now Camryn and Gina have fevers. When she doesn't feel well, Camryn just wants to curl up and sleep. Gina's been pretty quiet, too.

It's been hot here. Feels like summer already. I cleaned out all my pots on the patio yesterday. It's a little late to plant veggies, but I'll go ahead and try anyway.

We got an outdoor rug for the patio, and I need to use the leaf blower out there, then wash it off before putting the rug down. Our patio is made of those little pebbles, so it's not very smooth. I think the rug will make it more comfortable. Aubrey and I are planning a little Easter party out there. She loves talking about what we will do--the food and decorations.

I got another unit of blood on Friday. Didn't see my doc at all that day. I guess the blood helped. I was busy all day yesterday and felt okay. I was tired last night, but so was Ron. We all went to bed pretty early.

Aubrey was playing on the floor with Gina yesterday and she put her head on Gina's tummy. She looked up at me with a surprised expression and said, "I hear Gina's tummy grouching." :o)