Well, that is just a fun word right there. Chronic. Chronic Graft vs. Host Disease. After a recent visit with my GVHD doctor, she let me know that the team in Dallas has tried just about all of the available treatments, and that I should go visit a fella in Seattle to see what he has to offer. Just hop on a plane and let him look me over once. I am a pretty compliant patient, so I immediately started looking at airfare for two. I then realized that this made no sense for us right now. One of many problems was simply getting on an airplane when I start having major trouble breathing around 5,000 feet. Also, a person that knows my history (and has read over this Seattle fellow's journal articles) will do what is best. I am happy with my treatment for now. I went from there to my photopherisis therapy that does something to the tcells in my blood using UV light. It became quite clear that this was too taxing on my body and my family with the trips to Dallas and the subsequent days of recovery. We just were not seeing the results that we hoped. So, I made plans to cancel any further trips and cut the treatment short.
In the next few days, I went to my local eye doctor. Fearing the worst, I put my chin up to the microscope. "Not too bad." What? That was the best news I had heard in a long while. Not only have I maintained vision, but the eyes actually look less dry. My tear duct plugs had fallen out, so he put some more in for me. "Just keep doing what you have been doing." My eyes have been so much more comfortable! So....I did not cancel the photopherisis. Maybe God is using it after all, and we should stick to the plan.
So, how am I feeling? Decent. I'm able to do a few things here and there, but my eyes and my lungs as well as just feeling run down require me to sit a lot more than I would like. I feel unsteady, but my appetite has picked up. I might have to start taking medicines to make me eat more if I keep loosing weight. It is the opposite of the way I have lived most of my life. I keep crackly packages close at hand to grab if there is any inkling of hunger, and my husband is on his toes to grab me a real Dr. Pepper for coughing fits. Bizzarro world.
Monday, November 4, 2013
Saturday, August 31, 2013
Sweet little quotes
Two quotes by a super sweet little girl that I never want to forget:
"It's a pa-pize!" (surprise)
"What land are we in?"
"It's a pa-pize!" (surprise)
"What land are we in?"
Monday, August 19, 2013
Waltz Across Texas
Tonight I'm putting together a playlist with as many west Texas songs as I can think of for my uncle and his wife that just got married out there. "Waltz Across Texas" by Willie Nelson just played. I have the strongest memory of my grandmother, Nanny, showing me how to waltz in her trailer house while this 8 tract played. She had always been very old to me, and it always delighted me to no end when she showed me a new dance. "Put your little foot" and "The Cotton Eyed Jo" were also favorites. During her early married years, she frequented the honkey-tonks with my grandfather. She remembered dancing with Bob Wills once in Bandera. I also loved when she played hymns on the piano. Nanny "jazzed it up" a bit, and it seemed more like an old saloon than a church building. Mrs. Causey honored her memory greatly by playing at the Methodist Church in this style for my grandmother's funeral.
So, the drive to west Texas was about 9.5 hours, and we got to enjoy my parent's cabin one night with the gorgeous views and beautiful stars and incinerating toilet. Before this trip, we had gone to my mom's brother's 75th birthday and on to South Padre Island for a continuing medical education trip. Sea level is much nicer to my lungs than the mountains!
Our last hurrah before school begins is to the Bass Pro Shop resort outside of Branson, MO. I doubt that we'll go into town to see shows because there is so much to do right by the lodge. Fishing, boating, and maybe even BB gun lessons.
a few quotes:
"Mom, I love you so much now that I am four. I didn't when I was three."
"Zane! Quit playing with your pizza!" "I'm not! See, it is a flower, and the wind is blowing the petals." "Oh, yeah....That is beautiful!"
"When I get my pocket knife I'm going to show you how I can chop vegetables in the air!"
So, the drive to west Texas was about 9.5 hours, and we got to enjoy my parent's cabin one night with the gorgeous views and beautiful stars and incinerating toilet. Before this trip, we had gone to my mom's brother's 75th birthday and on to South Padre Island for a continuing medical education trip. Sea level is much nicer to my lungs than the mountains!
Our last hurrah before school begins is to the Bass Pro Shop resort outside of Branson, MO. I doubt that we'll go into town to see shows because there is so much to do right by the lodge. Fishing, boating, and maybe even BB gun lessons.
a few quotes:
"Mom, I love you so much now that I am four. I didn't when I was three."
"Zane! Quit playing with your pizza!" "I'm not! See, it is a flower, and the wind is blowing the petals." "Oh, yeah....That is beautiful!"
"When I get my pocket knife I'm going to show you how I can chop vegetables in the air!"
Sunday, June 30, 2013
The Bike and the Snake
Van agonized for months over whether or not to buy a road bike. He already owned a mountain bike, but most of the triathalons in which he hoped to participate required a road bike. Yes, he could rent one the day of the race again, but it would be helpful to be able to train with one. He scoured craigslist, and finally found one that he loved at Bear Mountain, the locally run camping/bike store. Everything local is named after a bear. "The Dancing Bear" is a pub, "Oso" is a frozen yogurt joint, and that's all I can think of right now. So, he headed over to Bear Mountain the first chance he got, and the road bike had just been sold.
A few days later, he signed up for the Xterra, a mountain bike triathalon in hilly Cameron Park. He had two weeks to train, but hey, he had a mountain bike. He met me at the YMCA to help retrieve the children after their swim lessons with the intent to bike afterwards. He returned to his truck and found it lacking the mountain bike. The poor fellow went back into the Y, but they could do nothing because there are no cameras on that side of the building. In the next couple of days, he returned to Bear Mountain and bought a great MOUNTAIN bike. Ugg. He did his best to catch up on the training.
The day of the race arrived. Van cruised up and down the hills feeling the quality of the new bike, when at mile 4 (out of 8), the chain snapped and the end of the handle bars hit him full force in the gut as he crashed to the ground. He checked himself over, tried not to sob like a baby, and told his urologist friend that was with him that he might need an MRI later that day. Along came the nice race folks who picked up both Van and the bike, and commented, "Is that a new bike? Yeah, sometimes the chains are a bit loose at first."
The kiddos have been mostly fighting like cats and dogs since school let out with a few sweet breaks in between. The puppy dog has been learning quite a bit and mostly obeys. Mostly. She still has a weakness to jump on the table if we are not looking. Thankfully, she loves outdoors and does not seem to mind the heat, so we let her in and out thoughout the day, and can kennel her outside in the morning if we need to go somewhere. She is a quiet dog, but raised a racket yesterday when she came upon a snake. Of course, Van was out for a jog, and I had just gotten the last child down for a bed. Cade was concerned, so he went outside to check things out. I told him that it was either a frog or a snake. Sure enough. I yelled at him to come and get his boots. Of course, that stirred the whole house. I made Avi and Zane stay inside, and I grabbed Van's boots for me. I started looking around for the hoe, but I realized that I was definitely going to fall in those cavernous boots trying to kill the snake. I asked somebody to get a treat for the dog who was very excited and proud of herself, and that amazingly lured her into the house. Cade quickly found the plastic fold-out snake field guide, and we tried to discern which snake it was. Van arrived home not to three sleeping children but to three frenzied children climbing the walls and a very tired wife. The man went into a frenzy himself (I love this about Van.), and grabbed some thick gloves and his snake stick that he got at the rattlesnake festival a couple of years ago and has never had the chance to use. I yelled after him to put on his boots, and he did. I guess I have a thing about snakes requiring boots. So, he and Cade worked on capturing the snake, and they did after many whoops and hollers. I think they were as proud as Scout. They posed for a picture and put it in a garbage bag. The whole lot of them loaded into his truck and took it down to the river as it was decided that it was a diamondback water snake. I kept the dog and watched an episode of Pioneer Woman. Then, about two hours after we had first begun, we started the bedtime ritual all over again.
I am very weary of medical stuff. It feels like two steps forward and one step back. The past few weeks have been especially hard, and my mom and my sister have been so kind to care for my kids. I started some new medicines this week that knocked me off of my feet, and I could literally barely walk because I felt so unbalanced and weak. It took awhile, but we finally narrowed it down to the medicine that was causing the trouble, and I stopped using it. My balance has almost come back, but I am still seeing double sometimes. I expect that by the end of the day my eyes will be working together again. To top it off, I had some significant muscle pain in my back and ribs. This one was new for me, so I wasn't sure what to do. One thing that has been helpful is that I took my handy-dandy 20% off coupon to Bed Bath and Beyond and bought a back massager that straps to a chair. So, in the middle of the night, I slip into the kitchen, grab a Gogurt, and sit in that chair for 15 minutes. It helps so much. My lungs do seem better and so do my eyes. I am thankful. Mom and Dad are coming today to take care of the kids while I do the photopherisis treatments in Dallas, then we will celebrate the 4th in Utopia. Cade is looking forward to chicken and dumplings.
A few days later, he signed up for the Xterra, a mountain bike triathalon in hilly Cameron Park. He had two weeks to train, but hey, he had a mountain bike. He met me at the YMCA to help retrieve the children after their swim lessons with the intent to bike afterwards. He returned to his truck and found it lacking the mountain bike. The poor fellow went back into the Y, but they could do nothing because there are no cameras on that side of the building. In the next couple of days, he returned to Bear Mountain and bought a great MOUNTAIN bike. Ugg. He did his best to catch up on the training.
The day of the race arrived. Van cruised up and down the hills feeling the quality of the new bike, when at mile 4 (out of 8), the chain snapped and the end of the handle bars hit him full force in the gut as he crashed to the ground. He checked himself over, tried not to sob like a baby, and told his urologist friend that was with him that he might need an MRI later that day. Along came the nice race folks who picked up both Van and the bike, and commented, "Is that a new bike? Yeah, sometimes the chains are a bit loose at first."
The kiddos have been mostly fighting like cats and dogs since school let out with a few sweet breaks in between. The puppy dog has been learning quite a bit and mostly obeys. Mostly. She still has a weakness to jump on the table if we are not looking. Thankfully, she loves outdoors and does not seem to mind the heat, so we let her in and out thoughout the day, and can kennel her outside in the morning if we need to go somewhere. She is a quiet dog, but raised a racket yesterday when she came upon a snake. Of course, Van was out for a jog, and I had just gotten the last child down for a bed. Cade was concerned, so he went outside to check things out. I told him that it was either a frog or a snake. Sure enough. I yelled at him to come and get his boots. Of course, that stirred the whole house. I made Avi and Zane stay inside, and I grabbed Van's boots for me. I started looking around for the hoe, but I realized that I was definitely going to fall in those cavernous boots trying to kill the snake. I asked somebody to get a treat for the dog who was very excited and proud of herself, and that amazingly lured her into the house. Cade quickly found the plastic fold-out snake field guide, and we tried to discern which snake it was. Van arrived home not to three sleeping children but to three frenzied children climbing the walls and a very tired wife. The man went into a frenzy himself (I love this about Van.), and grabbed some thick gloves and his snake stick that he got at the rattlesnake festival a couple of years ago and has never had the chance to use. I yelled after him to put on his boots, and he did. I guess I have a thing about snakes requiring boots. So, he and Cade worked on capturing the snake, and they did after many whoops and hollers. I think they were as proud as Scout. They posed for a picture and put it in a garbage bag. The whole lot of them loaded into his truck and took it down to the river as it was decided that it was a diamondback water snake. I kept the dog and watched an episode of Pioneer Woman. Then, about two hours after we had first begun, we started the bedtime ritual all over again.
I am very weary of medical stuff. It feels like two steps forward and one step back. The past few weeks have been especially hard, and my mom and my sister have been so kind to care for my kids. I started some new medicines this week that knocked me off of my feet, and I could literally barely walk because I felt so unbalanced and weak. It took awhile, but we finally narrowed it down to the medicine that was causing the trouble, and I stopped using it. My balance has almost come back, but I am still seeing double sometimes. I expect that by the end of the day my eyes will be working together again. To top it off, I had some significant muscle pain in my back and ribs. This one was new for me, so I wasn't sure what to do. One thing that has been helpful is that I took my handy-dandy 20% off coupon to Bed Bath and Beyond and bought a back massager that straps to a chair. So, in the middle of the night, I slip into the kitchen, grab a Gogurt, and sit in that chair for 15 minutes. It helps so much. My lungs do seem better and so do my eyes. I am thankful. Mom and Dad are coming today to take care of the kids while I do the photopherisis treatments in Dallas, then we will celebrate the 4th in Utopia. Cade is looking forward to chicken and dumplings.
Monday, May 27, 2013
Froggie went a-courtin'
"But sweetie, I think we should keep the tadpoles here. If we take them home, they might die." With big round eyes, Zane said, "But what if they LIVE?!?" And so they did. You can view them on our kitchen counter. I telephoned my wildlife consult, and my sister expertly recommended boiled lettuce, and now we have twenty or so fat little tadpoles swimmin' in the water. We had gone down to the river with our sweet friends that have just finished up their assignment in Uganda. What a precious time. We all clung to every minute. The visit also included a presentation with our children dressed up as a hunter, an assassin, a bunny, a butterffly, a queen and a narrator. The keyboard music punctuated the dramatic parts of the skit. Too cute. My cheeks hurt from laughing so hard! No visit is completee without a trip to the doctor, so after a confirmed corneal ulcer for me and dehydration for Van, our friends turned lemons into lemonade and took the children out for pizza and a movie and saved the day. My eyes are still struggling, so Mom is in town to take me to appointments.
Friday, May 10, 2013
the long and winding road
This has been a long road! I have been so discouraged by the setbacks, but my doctor has encouraged me to see the big picture and focus on that I have received a "long time cure", and that it is very unlikely for leukemia to crop up again this far out. We are changing to another doctor in the same group that focuses on graft vs. host disease. She recommedended another round of photopherisis (treating the blood with light). 80-90% of patients that have eye and mouth problems like mine find some relief. There is a possibility that it could help my lungs, too. Insurance has not been as cooperative in the past, so I have had to cancel some Dallas appointments, and we are having a hard time finding a photopherisis place. I do worry, but I know that the Lord will provide. In the meantime, I am trying to eat and stay active despite my low energy. It has been tough.
Tuesday, April 9, 2013
A New Chapter?
Seven Decent Breathing Days in a row! I even have some kind of sinus thing going on, and it hasn't morphed into pneumonia. I'm determined to get off of some of my meds, so we shall see if the doctors let me. I've been able to host a craft night for a handful of church folk, and host a big birthday bash for our now 6-year-old sweetie. What would you like for your birthday, Zane? "Balloons." Okay. What else? "I would like balloons for my birthday." A very loyal child. We also got him a zip line. Van installed it(mostly) just in time for the hoards of children willing to wait in line to teeter on the top of a ladder and shoot across the yard. Thankfully, one of the dads stayed at the party to catch children at the end as they approached the small tree leaning from the strain. We'll have to move the set up at some point!
Scout, our puppy, is doing well, and we are getting used to living with an animal. Avi and I took her on a walk around the block. It was the first time that I had the confidence to walk up the incline, and it went well. I had been worried that I would run out of breath and have a hard time getting back home. Scout was fussy with the leash and got tired very quickly, so Avi and I carried her much of the way! It was nice to go for a walk with these two sweeties.
Today, I will drop off Avi at Parents' Day Out, run a couple of errands, eat lunch with friends and meet Cade's class at the Mayborn museum to catch part of their field trip. He is very excited for his tour of Waco!
Scout, our puppy, is doing well, and we are getting used to living with an animal. Avi and I took her on a walk around the block. It was the first time that I had the confidence to walk up the incline, and it went well. I had been worried that I would run out of breath and have a hard time getting back home. Scout was fussy with the leash and got tired very quickly, so Avi and I carried her much of the way! It was nice to go for a walk with these two sweeties.
Today, I will drop off Avi at Parents' Day Out, run a couple of errands, eat lunch with friends and meet Cade's class at the Mayborn museum to catch part of their field trip. He is very excited for his tour of Waco!
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