Day 123

Hi All,
So I went to the docs today. I now only have to go to the clinic ONCE A WEEK! I rule!!! Doc McCarty (the big cheese) says I am doing super well and that I have NO chromosomal abnormalities at all. According to my blood and bone marrow I am MDS free!
My friend Mari is here and we were laughing about the Mouth of Martha story. She reminded me of the ending of the story. She asked me if I had any maps in the car and I said absolutely- I have maps- no problem. So we were very lost and she looks for the maps in my glove compartment and all I had were Cracker Barrel Maps. We had no idea where we were BUT we did know where the restaurants were. I actually still have the maps in my car, I think. You never know.
Be Well,
Beryl

Day 120

Hello,
It's day 120! That doesn't seem very long somehow. But it is! Yesterday my friend Shelby took me for a breathing treatment- the goal of it is to prevent infections (viral and/or fungal). Today should be less eventful- just house tasks and banking. My friend Jody is coming to help me. This sunday my friend Mari is coming from Spain. Can you believe that? That's a long way to come to help a friend. She's Silvia's sister and we have been friends for 29 years. We had babies at the same time and her mothering skills helped me with my boys many, many times. It will be good to spend time with her. One time, about 10 years ago, I drove her and one of her sons from cville to North Carolina to stay at Silvia's NC home. Lyle needed to go to Tennessee to visit a sustainable farm so it was sort of on the way. We had to take many small back roads and ended up a little lost. We asked these older southern gentleman directions and their accent was so dense none of us could understand a word they were saying. One man was saying we had to go to "Mouth of Martha" (I think) and we couldn't figure out what he meant. We kept repeating it (or variations of it) and he kept repeating it back. We finally left with a vague idea of how to proceed and couldn't stop laughing over the language problem. When I think of Mari I remember "Mouth of Martha" where ever the heck that is, and how much fun she is to be with.
I'm working very slowly on my taxes- I need to get a move on- tempus is totally fugiting! (forgive the spelling). I'm still on the med "taper" as they call it. So far so good- no side effects no drama. My hair is growing in a little. Very Sinaid O'Connor, sort of.
Have a lovely weekend
Beryl

Day 116

Hi,
I saw the big cheese doc today (John McCarty) and he said all my tests came back with great results and that I'm his best patient!! (maybe i encouraged him a little bit around that) James asked him when we could go home and he said not until the end of April. He explained (again) that I need to slowly get off the immunosuppressant drugs and then wait about a month to make sure everything stays stable. He reminded me (again) we didn't want to get careless now. I was very happy with all my test result but i thought it might mean going home a little earlier. Apparently not. (heavy sigh) I love the spring and my yard is just filled with flowering trees and the boatload of bulbs I planted in the fall. I'll have to go and visit them during March. The main thing is I'm heading in the right direction. McCarty wants me to see a pulmonary specialist just to make sure things are going well so that wlll be coming up. Maybe the porch will be finished by the time we go home. That would be pretty wonderful. I didn't need any meds in the lab today and on thurs I'm only going to take a breathing treatment- not have labwork done. This is such a slow recovery but it's still recovery and I'm very grateful to be on that side of it.
Stay well,
Beryl

Day 114

Hi Blog Buds,
I had a great day today. James and I drove to cville (I drove there!!!) and went to our house. We met our contractor, who is currently re-doing the molding in the kitchen and replacing windows. He's also going to screen in the porch (!!!!!!!!) and redo the molding in the front hallway and open up the door to the dining room another 36". This will make the opening symmetrical with the room which has been bugging James for 10 years. I'm so excited. All the interior stuff will be done before we get home. He'll work on the porch in late spring. Although it was an expensive afternoon... it was great. We went to Ian and Bridget's afterwards and cruised real estate. Me so happy! James drove home and then I had a really great nap. I can't wait to go home. It's so colorful and cheerful there. I saw tons of dafs and tulips poking up...just a few inches but still present. It felt so good to sit in the fam room and look out the windows (the beautiful windows we replaced last year). Not too long now. On monday I have my breathing treatment and reg labwork. My cousin left yesterday. We miss him. James got to work on time everyday last week. He was good company and very helpful. See why he's my favorite cousin!?
Take care,
Beryl

Day 112

Hey,
I had the CT Chest scan today- no problems. I went to get labs afterwards and they sent me home! Talk about a dream come true. I'm trying to get new license plates that say either "Bite Me" or "B Positv". I may need to think this through.
xoB

Day 109

Happy Valentines day!
I went to the clinic today with James and my cousin Barry. The good news is my donors blood type won and I am now a B positive! Isn't that the best blood type? I love it and I'll remember it! The final results are not in yet from the biopsy but it's still looking good. My pulmonary test came back normal. The results aren't as good as they were before the transplant but I was super fit then.
I have my CT chest scan on thursday. The docs said this summer in July and august are statistically when the graft vs host rears it's head so I'll need to be observant. I also start a new drug to prevent thrush. I've been putting it off but I'll start it tonight. I had my port lines removed today- they'll "access" me when I go to the clinic. The port is underneath my skin. Kinda creepy but it's nice not to have plastic crap dangling from my chest all the time. So it feels like progress. I talked to the doc about going back to face to face teaching in the fall and he was not excited. He said we won't know until august- when we see what happens with the graft vs host if anything. I'd love to be able to plan. I know I need to be grateful to be doing so well but I do like to plan. Another stupid lesson!!!
Hope you have a lovely valentines day!
Beryl

Day 107

Hi,
All's well. I had my last dose of an antifungal IV med Micofungin last night. James would hook me up to it every night. I also decreased my dose of Tacrolimus today from 6 pills to 4. I feel ok. I had to have a transfusion on thurs. and the docs think the decrease in these drugs will help my blood count. I feel tired but ok. My cousin Barry from Denver is coming in tomorrow to help me. He's always been my fav cousin. He use to take me to the movies when I was little. It should be a good week. We have clinic on monday and a chest CT scan on thurs. I went to the eye docs fri and got a clean bill of health. The Richmond docs were concerned about Graft vs Host but there are no signs of it. So far so good. I don't have the results of the pulmonary function test yet.That's a boatload of doctory stuff- huh??
James is making us juice now and then we'll do some laundry and tidy up some.
Have a good weekend,
Beryl

Day 104

Hello Blog Buds,
It's been a quiet day- no news, no complaints! I sent a letter to the editor this week about health care and they published it!
Check it out:
http://www2.dailyprogress.com/news/2011/feb/09/firsthandedly-grateful-health-care-legislation-ar-831761/

Tomorrow I go to the clinic and have tests, then fri I see an eye doc. Other than that I'm keeping up with my school work and resting. James is making us juice now so I'm outta here.
Be well,
Beryl

Day 102

Hello Buds,
Thanks for the comments on the posts. They make me teary and grateful to have such good friends. I just video chatted with my friends Rob and Anna and their gorgeous baby girl, Dottie. That is one enchanted child. I couldn't stop looking at her- all babies are amazing but this little girl has a surprising serenity. I think she gets it from me!!! Anyway I can't wait to meet her and hold her.

The clinic went well today. I had all my blood work- a crazy amount- and my bone marrow biopsy. The Dr. (MaryJo Martin) is gifted. She is so patient and gentle and funny. She makes it tolerable. The results will show my engraftment and other stuff. The results will come in in stages- the biggest result takes about 3 weeks. The goal is for the engraftment to hold steady. After the tests James brought me home and I slept like a monkey. An actual monkey. Can you believe it? Tomorrow my cousin Meg comes to care for me. She's a hoot and always fun to be around.
Stay well!
Beryl
James just made me yummy stir fries. He's good looking and he sure can cook!

Day 100!

Hello Blog Buddies,
Today is day 100. I start reducing my meds slowly and allowing my own immune system to develop. This is a dangerous time and there are a lot of things my body needs to do if I am to recover from the transplant. I need to change over to my donors blood type, I need to fight the dreaded graft vs host disease which may rear it's scary head when the drugs are reduced, and I need to develop an immune system. The Graft vs Host disease may occur anywhere in the body and do a little or a lot of damage.It's a toss of the dice. That's one of the reasons for all of the tests. The quicker they find it, the quicker they can deal with it. My plan is to keep eating right, exercise regularly and juice more regularly. I'll also be meditating, visioning and praying like mad. We did some EMDR on it today which is very helpful. It's good to know I have your support and prayers too- I need them more than ever.
In the struggle!
Beryl

Day 97

Hi,
It's a rainy day and I want to snuggle up and nap and it's still the morning. I've been working on school stuff including the schedule for Fall. It's hard for my punkin head to sort all that out. It's either that or taxes so I'm sticking with school work! I don't see the docs until fri when I have several pulmonary tests to check my lung function. Let the testing begin!!! My friends Rob and Anna had their baby girl this week. This is very big and happy news for us all. Baby Dottie- in the house!