Friday, January 27, 2012

Rain and Recovery

Photo Credit

We had really loud, long-lasting thunderstorms here Tuesday night. Even had a tornado hit one local neighborhood and damage some houses. We got several inches of rain, but are still in a drought, so I hope it will rain more.

Reece came and got into bed with us shortly after the thunder started. He was just amazed at the sound of it and kept talking about it the next day. Josh said that when he came in to get Reece up for school Wednesday morning, Aubrey and Cammie were sitting together on the couch at the end of our bed, sound asleep and leaning against one another. How cute is that? :o) We didn't hear them come in, but they must have been afraid. I wish I had known they were there.

Ron and I spent most of Thursday at the BMT clinic (bone marrow transplant). My lab results look good--everything is normal or almost normal except for that pesky red blood count. My doctor said that it sometimes takes up to six months for that to recover, and that if it's not going up in a couple more months he can give me something to stimulate the cell growth.

I got Rituxan in my port and Methotrexate in my Ommaya reservoir. Did fine with it until we left. As soon as I got into the car I started to retch and felt a bit queasy all day. They gave me benedryl and tylenol as pre-meds, and the benedryl makes me so sleepy. I was pretty much wiped out for the rest of the day. I'll have one more Rituxan treatment next week, but will continue the Methotrexate every other week for quite awhile. Those chemos are to try to prevent relapse; they specifically target cancer cells.

Dr. O said that Johnnie's cells and mine must be a nearly perfect match because I've had so little trouble. He expects I still might have some graft versus host disease at some point, but I've had few symptoms of it so far (symptoms include redness of the skin, or a rash, itchiness, diarrhea, dryness of mucous membranes). I'm at day 51 after my transplant.

In the next couple of weeks I'll have a PET scan and a test to see what percentage of my cells are from the transplant. Last time they checked it was 80%. I'm hoping it will be 100% this time. Dr. O says that I am doing "remarkably well." :o)

Thank you all for praying for me!

Monday, January 23, 2012

Monday Morning

Monday morning. Ron is at work, Reece is at school. Josh just came back from taking an old high school friend home. We saw a red Camaro out in front of the house this morning, just sitting there with its brake lights on and two flat tires. When Josh took Reece to school, he backed around and looked inside and it was his old friend, passed out on the front seat. I guess he was headed home and ran into a curb or something. He lives nearby.

Josh got Reece up at 6:30, but when I went downstairs Reece was sound asleep on the couch. He looked so sweet, I hated to wake him, but he had 20 minutes to get ready for school. Josh made him some oatmeal. He loves oatmeal and wants it almost every morning.

I put a load of laundry in the washer. Dish cloths, sheets, white stuff. I had to dig for socks and underwear for Reece this morning. We need a plan around here. Laundry needs to done every. single. day. when there are four children and four adults.

The little girls just woke up. They slept in this morning. They are usually up by 7 or so. Kelly got them both little stuffed unicorns for Christmas, and they sleep with them. Camryn dropped hers on the floor and said, "Oh, I need my 'Corn!" Following each other downstairs in their pink polka dotted blanket sleepers with their wild, fly-away hair, they look exactly like Thing One and Thing Two this morning. :o)

And so the week begins.

Saturday, January 21, 2012

Saturday Summary

Reece (and his parents) had fun at the zoo on Thursday. The weather was perfect for the field trip. Reece said that he liked the giraffe the best, but Josh said that he didn't want to leave the crocodiles or some of the little monkeys. There were two other little boys in their group and they all wound up with little zoo toys even though the chaperones were not supposed to buy them anything. I think they were bribes.

Ron and I were at the hospital for half a day Friday. My electrolyte levels had to be checked, and though still high they were going down, so I didn't have to have anything except a magnesium pill.

We went by Mom's on the way home. She is still adjusting to being back home again. She hadn't taken Teddy out and was still in her PJs. We took Reece with us today when we went over there. He and Mom had a great time walking around with Teddy looking for special rocks. Reece wanted McDonald's, so Ron went and got all of us some lunch.

We stayed with the kids while Josh and Cyrise went grocery shopping after we got home. Reece and the girls played outside most of the time. Gina fell asleep on my lap. There is nothing so sweet as the heavy feel of a sleeping baby on your chest.

I drove to Mom's this afternoon. It's the first time I've driven since the cauda equina syndrome started. When it first began, I was afraid I wouldn't be able to brake quickly enough in an emergency because it was hard to lift my feet. Although I still have the "asleep" feeling from my butt down, my legs are strong now and I don't have any trouble lifting them or my feet. It felt so good to be driving!

Josh grilled raspberry chicken this evening and served it with steamed rice and broccoli florets. So good! He gave me a fairly big portion, and I ate almost all of it. I'm so glad he likes to cook!

It's been a nice Saturday.

Wednesday, January 18, 2012


Reece is going on a field trip to the zoo tomorrow. His mom and dad are going along too, so I rescheduled my Thursday visit to the BMT clinic for today so that Ron and I can stay with the little girls tomorrow.

It was a long day at the hospital, getting a chest x-ray, lab work done, Rituxan and magnesium. My creatine number was a bit high, so I'm going to have to go back Friday so they can check it again.

We are having beautiful weather. It's cold at night, but in the 60s and 70s during the day, with lots of sunshine. I hope the kids have a gorgeous day tomorrow for their field trip. Reece is looking forward to riding the bus again. :o)

Not much going on around here right now. Winter is not my favorite time of year. I don't feel like doing anything.

Thursday, January 12, 2012

Uncharted Territory

I was at the hospital most of the day today. They did my lab work, then it took forever for the pharmacy to get the Rituxan ready. They finally started it about 11:30 AM, and it takes about 4 hours to be infused. My butt was sore from sitting for so long.

My doctor came in and said my labs looked great (platelets are up to 306; normal is 142-362). Johnnie's supercells are working overtime. :o) The doctor said that I am in "uncharted territory" right now. I waited for him to explain, and he said, "Well for one thing, you're alive." I seriously think that he wasn't sure that an old lady like me could make it through all this.

He plans to continue the methotrexate in my spinal fluid for at least another 20 times, and will continue the Rituxan every other week for the foreseeable future. We're hoping that will keep the mantle cell at bay. These doses of chemo are sort of maintenance doses, I guess. He said by the time we finish that regimen, Dr. B will be back from Afghanistan, and we can see what further treatment, if any, is needed. Please send up a prayer for a complete cure if that is God's will. Thank you!

I don't have to go back to the hospital until next Thursday, unless I start feeling really bad or having fever or some kind of problem. That's a relief. Now if I can just get back some energy!

It is cold here in south Texas today. It's probably going to go below freezing tonight. Thankfully it is dry, so no ice.

Sandi will be bringing Mom home this weekend. Mom has been with her since before Thanksgiving, basically. She was home for a week while Sandi attended a conference. They've been in Dallas quite a bit, so Mom has had a chance to get to know her great-grandchildren there. I imagine Mom is ready to come home to her own place, and I know she is ready to see Teddy. He probably thinks that he is part of Kelly's dog pack by now. :o) I'm so blessed to have sweet sisters who are there when I need them. I'm so grateful that Sandi was able to take Mom into her home for this time.

Have a great Friday everyone.

Wednesday, January 11, 2012

Happy Birthday, Jason!

Wishing you the best year ever, our Jason.

Some birthday wishes for you:
A deepening of Faith.
Excellent health.
A joyful, laughter-filled home.
Financial security.

You are a wonderful son and I thank God for you.

I love you.


Tuesday, January 10, 2012

Happy Birthday, Cyrise!

May God bless you on your birthday and always.

May this new year of your life be the best one ever!

May your hopes and dreams come true.

We love you.

Monday at BAMC

My lab results from yesterday looked good. My platelet count is normal, white count is a bit high, hemoglobin a bit low, but nothing critical. I only had to have magnesium again. My chest x-ray (done every Monday) looks "much better." I'm still coughing but not like I was, and I haven't needed to use the oxygen at all lately.

I also got methotrexate in my Ommaya reservoir, but first the doctor drew out some spinal fluid to check for cancer cells. He called me later in the day to tell me that everything looked fine--no cancer cells in the sample. I asked him last week when we would do another CT scan, and he said we would wait a few weeks for my body to recover from all that we have been doing to it in order to have a clearer picture. He's planning to give me more Rituxan, I think starting on Thursday.

My legs are strong, I'm walking mostly without the walker. My balance is pretty good and seems to be getting better. I still have the cauda equina syndrome--tingling and numbness in my legs, feet and "saddle area." It's not really painful, just annoying.

So, things are looking good. Dr. O said that my recovery is mostly up to me now. They are doing what they can, and I need to eat, take my meds and move. I can do that. :o)

Thank you all for your continued love and prayers.

Monday, January 9, 2012

Quick Update

Another Monday. I'm off to the hospital again this morning, for labs and methotrexate in my Ommaya reservoir. Fun.

I've done okay this week--just needed magnesium and potassium through the IV a few times, but no other transfusions. The mucositis is greatly improved. My mouth still feels weird, but it doesn't really hurt, and I can eat just about anything I want now. Still really, really tired.

It's rainy and chilly here this morning. I hate having to go out. Just want to snuggle under the covers and go back to sleep. I get up around 6:40 to spend time with Reece before he goes to school. If I didn't have to go to the hospital, I would go back to bed.

Better get myself dressed and ready to go. Have a good Monday.

Monday, January 2, 2012

Happy New Year!

I've been home from the hospital for nearly a week. Jason and his family came for a few days and we had our Christmas celebration on Thursday, December 29. It was fun, even though I didn't feel very well. I love seeing my kids and grandkids all together.

Ahlyssa brought her viola and played for us. I loved that!

I'm still fighting the mucositis, but it is improving. I've been back to the hospital several times for labs, but haven't had to have any transfusions lately, just potassium and magnesium. I'll go back again on Tuesday.

I'm very tired. I'm supposed to keep walking, but just going up or down stairs or taking a shower wipes me out. I'm trying to eat more. I hope that will help to keep my energy up.

It looks like a pretty day outside--lots of sunshine. Hope you're having a lovely Monday.