25 October 2009

Sunday ~ 25 October: Day 99

Wonderful news! Fabulous news! I AM HOME!!!!!!!

I went to the OTU clinic and had tests done all day Wednesday. By the time I got back to see the doc it was mid-afternoon and I was exhausted. But except for my cyclosporine levels being too high, all my counts looked great. I begged, pleaded, cajoled and the doc agreed I was ready to graduate from short term care to long term care. Actually, I am pretty sure he was going to let me go anyway, but he had to tease me a little.

Normally in long term you go in once a month for tests and to see the doc, but they want to see me this coming Wednesday to check cyclosporine as they decreased my dose of the medication. Hopefully after that I will change to once/month. If so, it means they will take out my Picc line. It will be nice not to have to worry about that anymore.

At the eye appointment, the doc discovered I do have the beginnings of ocular GvHD and she started me on Restasis. I have to go back and see her in 8 weeks. She also found I have the beginnings of cataracts. Glad to have found them so early. My pulmonary function was good and I haven't heard back from bone density and other tests yet. Perhaps this week.

Mike brought me home late Thursday afternoon. My whole extended family was here to welcome me. There were welcome home banners and balloons everywhere in and outside the house. Plus my sister and niece had decorated the front of the house for Halloween with all my tombstones, skeletons and a gazillion mums that they bought and planted. It looks fabulous. I started crying.

But the outside was nothing compared to the inside. You all know I had to give up the parrots as I can't be around them now. Well, when I left there was still lots of parrot dust around the house. Between my wonderful daughters, mother, sister and niece the entire house (including blinds, books in bookcases, dishes, etc.) was taken apart cleaned and put back together. This was a massive task. My dishes are all rearranged in ways I would have never thought of. I'll be making pics and posting them. And only one little p-86 bowl got broken. All the things I've been too tired to file and stacks of papers were put away properly. It's so wonderful. I still can't get over that they did all this for me. Even the guys got in on the act. They pressure washed the outside of the house, driveway, sidewalk and decks, plus they raked everything clean just before I got home. And we live in the woods. It's amazing! I have the best family in the whole entire world.

Saturday everyone but DD#2 and I went back to Nashville to move all our stuff home. Sally & Abbey also went to the Farmers Mkt to get me some pumpkins for decorating. Luckily it only took one trip to get our things back where they too belong. DD#2 stayed home to be my caretaker. She took me out for a drive and it was a beautiful fall day with lots of pretty foliage.

Thursday night I just lay in my bed thinking, "It smells like home." Dorothy was right, "There's no place like home."

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18 October 2009

Sunday ~ 18 October: Day 92

Good news, good news. My Friday labs were some of my best counts ever! Platelets were 228, an all time high. My white count was 6.3 with neutrophils of 5.09. The red count was down slightly, but that's still expected. It was 2.98 with hematocrit of 30 and hemoglobin of 10.8. Still I am not complaining. My bone marrow biopsy on Wednesday went fine and now we are waiting for results. Something else that came out of this is that I got to skip seeing the doc from this past Tuesday to this coming Wednesday. A whole week. This is progress!

Day 100 rapidly approaches. Besides seeing the doctor Wednesday, I have a whole slew of tests set up. Eye doctor, pulmonary, bone density, etc., etc., etc. I also think I am going to take part in a post transplant study on prevention of ocular GvHD. When the eye doctor sees me, she will determine if I am showing signs of getting it. If not, I'll do the study. Every day for a year I will put drops in my eyes in the morning and at night. I won't know if I have the real drug or the placebo. But it will be good to help out in this regard. So many people have helped me, it seems such a small thing to do in return.

Also on Wednesday (it will be Day 95) I am hoping they will tell me when I can go home. Thinking positively and keeping my fingers crossed!

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10 October 2009

Saturday ~ 10 October: Day 84

This has been and up and down week at lab. Tuesday all my counts were down. My white cells were so low that I was neutropenic again. Neutrophils were down to 300. All other counts were down, too. I got a unit of red cells (A positive) and a neupogen shot. They also scheduled me for another bone marrow biopsy on the 14th.

While I was at lab on Tuesday, Mike went home to get DD#2 to spend a few days with us. She was on Fall Break this past week. It was such a joy to see her. Every day she was here was a treasure. We didn't really do a lot. She slept late every day and we visisted a lot. One afternoon she and Mike went for a walk for her to explore Vanderbilt, but that was the most exciting thing that happened. Wednesday I felt rather sick most of the day, but luckily by noon Thursday that was gone.

On Friday morning Mike dropped me off at Clinic and then he left to take DD back home. My counts were all way better. Hematocrit up to 30. Neutrophils 1.14. Platelets 144. I did have to get a magnesium infusion, but life is good.

I am rapidly approaching Day 100. All my counts need to be stable. When they scheduled the bone marrow biopsy for the 14th, they cancelled the one that was supposed to be my 100 Day one on the 21st. Now the 14th will be the day I get my last biopsy for a while. (Provided no other problems come up.) I'm thinking positively for all my counts to look good on Tuesday and a good biopsy on Wednesday. Day 100 is actually 26 October and I would really like to be released by then. Any and all positive thinking, prayers, and visualisation would be appreciated. I thank you all.

And now I have to sign off because LSU and Florida are playing.

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04 October 2009

My art deco lady hood ornament

Some people asked for a pic of my deco lady hood ornament. Here she is on the Sebring convertible. She was safely removed and will go on my new TL-S.

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03 October 2009

My new red car ~ :-)

So, the little convertible is gone. In the meanwhile we have rented a car for Abbey to drive and DD#2 is driving Abbey's Jeep. The accident happened Monday afternoon. On Tuesday, Mike went back home to see about DD and other things. He got her to the doctor, got the stuff from my car, talked to insurance people, etc. While he was down there, Sally came to stay with me.

Wednesday my sister and I went out antiquing and dishing. Didn't find a single dish, but I did get a little chrome and black art deco side table. Not sure where it is going to go, but for $35, it was too good a deal to pass up. After we got home I started researching cars on the internet. I decided not to get another convertible, because of this rule I now have about having to wear sunscreen all the time and not being in the sun. Don't want GvHD! My other two favourite cars I had were an Audi 100LS and an Acura Legend. I started by checking on Acuras and Audis. After a number of hours of research, I decided the Acura TL Type S was what I wanted to go test drive. Looking online, there just happened to be one at the Acura dealership here in Nashville that was a colour called Moroccan Red Pearl. Red, how could I resist?

Thursday Sally and I went car shopping. I am still not allowed to drive, but I sat in the driver's seat and played with all the controls. Then Sally took us on a good test drive. Oh my. This car will go. The speedometer says max speed is 160. I think I will not test it out, though they tell me it really will go that fast. The car talks to you. And you can talk back. It's got every bell and whistle one can want. (Other than it is not a convertible.) As we were just shopping, I got the salesman's card and told him I would get back with him.

So after Mike got back up here, I was telling him about the car. He said, "Is this the car you want and will make you happy?" I told him I wanted him to go back with me to also test drive it and offer input. And I did know that I wanted a TL-S to replace my Sebring. Plus, I love the Moroccan Red Pearl.

Yesterday we went off to test drive. I am still not allowed to drive on the road, but after we got back from Mike's test drive I drove around the parking lot. Gosh, it's been four months since I have driven a car. Didn't seem like that long. LOL. After both of us were happy with driving, we went in, made a deal, and now I have this lovely vehicle. Did I mention it is RED?

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02 October 2009

Friday ~ 2 October: Day 76

OTU Clinic this morning. The good news is my platelets are at 198! This is up with my highest number since before I got sick. My red count was down and my hematocrit was only 28. At 28 I get transfused as that is my threshold on where I can function. It takes a while to type and cross, so after I got the go ahead from my doc, we left for about 4 hours and came back in the afternoon to get the transfusion. My neutrophils are still good, even though my whites are down. So basically this was a good day. All my other counts looked good, except the GenGraf. They've upped the dosage of it slightly again. The exciting thing was that today my blood type has changed from O positive to A positive. Now I am A+!!! This is great to go along with me being 22 and exotic. LOL.

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01 October 2009

Death of a Convertible

I am so sad. My convertible is no more. The wonderful news is that DD#2 is going to be OK. She was shaken up, is very sore, has whiplash and a little scrape on her elbow. But the doc checked her out thoroughly. Some fool driver who was not paying attention turned left across her lane directly in front of her and she couldn't stop in time to keep from hitting him. Both the airbags went off. The windshield is broken. The front is completely crunched. The sides are crunched and the doors wouldn't open. DD was driving with the top down so she was able to climb out. She called me crying and so upset. This is one time I really hated and resented being up here in Nashville instead of with my baby who needed me. Fortunately my sister, Sally, was able to get over to the scene and be there in my place. The driver of the other car is fine. He was in a big Lincoln Town Car. My convertible didn't stand a chance.

Goodbye little Sebring. I will miss you! Thank you for taking such good care of my baby.
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