30 September 2009

Handcrafted wooden spoon give-away

Do you love beautiful wooden spoons, cutting boards and bowls? If so, then visit my friend Ann's blog, Thibeault's Table, and see what she's got going on! To introduce her gallery where she is selling these fabulous handcrafted items, she is giving away three spoons. There are several ways to enter, so check out all the details there.

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28 September 2009

Monday ~ 28 September: Day 72

Well, the good news is my counts are up! Thanks to all of your good thoughts, prayers, healing karma, etc., every one of the counts are better. And for the first time since the transplant my hematocrit has gone up. Yea!!! The bone marrow biopsy came back with virtually the same results as the 30 day biopsy, so that was good too. I am no longer neutropenic. The doc has put me back on a Tuesday/Friday schedule at the OTU Clinic. I'll just be doing the regular lab stuff as long as things are going well. Around Day 90ish I will start having some other tests in preparation for getting to go home. I'm keeping up the positive thinking for everything continuing to go well.

Thanks so much to each of you for your continued care and concern!

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23 September 2009

Wednesday ~ 23 September: Day 67

Day 67! I am two thirds of the way to Day 100 - the theoretical day when I get to move back home. Keeping my fingers crossed! Once I pass that Day 100 threshold, I will still have to come for weekly appointments, but it will be so nice to be home and sleeping in my own bed most nights. And seeing my children every day!!!

The last week or so my counts for various things have been all over the place. My platelets rise and fall. My red count was down until I got a transfusion. My whites were WAAAAAAAAY down until i got a couple of neupogen shots. And my cyclosporin levels have gone crazy back and forth. Yesterday was my regular OTU Clinic visit. The good news we got then is that my new bone marrow biopsy looks no different than my 30 day biopsy, so at this point we are not seeing any MDS trying to return. (The MDS I had was particularly bad as it was a #7 chromosome deletion and there is a possibility it can come back. I am visualising NO footholes for it!) So far they have found nothing wrong with any of my liver levels, kidney function and stuff like that. Some tests are still outstanding.

The doc decided that we now consider bactrim off limits. Before it was merely stopped temporarily, but they are now thinking it was at least part of the cause of my counts dropping. Instead I will be getting monthly treatments of pentamidine. Now this is an interesting thing. I have to sit in a straight chair and be completely enclosed by a clear plastic tent. They give me a breathing apparatus with the medication where I breathe in through a tube and out through my nose. It lasts about 5 minutes or so. And an electric fan/filter in my tent is running the whole time. Whilst I was sitting in the tent, they closed my cubicle and ran Mike out. The pentamidine is supposed to coat my lungs and help prevent PCP pneumonia. (People with reduced immunity are at risk for getting it, so they proactively treat all transplant patients.) Have to say the five minutes breathing in the tent once a month are easier than taking that giant pill three times a week. And it doesn't make my counts drop!

So a recap on my counts as of yesterday:
Neutrophils had dropped to 0.3, but were back up to 0.7. Barely out of neutropenic, but I'm hoping they are going to continue to go back up.
Hematocrit had gotten down to 28, but with the transfusion is up to 30 and I can breathe easier.
Platelets were at their lowest in a while at 134, but still considered within normal. Still not sure why these are down, but they told me it is not something to worry about right now.

I am visualising all counts improving as we don't have MDS causing a problem. It still could be some GvHD and they are watching my symptoms. I started getting a few little ulcers in my mouth on Monday. They said that doesn't normally happen until closer to day 100 with GvHD, but since I've reached some of the other milestones more quickly, I could be having a little of it. They have given me a prescription mouthwash that has lidocaine, benadryl and something else that I'm supposed to use before eating. I also have a steroid ointment to use whenever the rash comes out on my forearms and hands. As long as I am able to eat and take my meds, they let me stay outpatient. But if my mouth gets to where I can't swallow, I have to go back in hospital. Have I mentioned it is very beige there? Literally. Everything is painted beige on that floor. It's enough to make a person ill. So, I'm thinking positively and hoping for the best!

After I got home from Clinic yesterday, my nurse called. After dropping to 200 something, appparently my cyclosporine level jumped to over 600. No GenGraf for me last night or this morning. I had to go back to lab this morning and get enough blood drawn to test the levels again, and I don't take GenGraf until they call and tell me how much to take. It's really odd to get a jump like that and no one seems to know why that would have happened, since I haven't had a change in diet.

Where we are now is watching and seeing how I progress. Hopefully my counts will start to go back up on their own soon and the cyclosporine will level out. My next regular clinic appointment is Friday, so we will find out more then. POSITIVE THINKING!


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17 September 2009

Thursday ~ 17 September: Day 61

Well my news from clinic today was not as good as it could have been. For the last couple of weeks I just haven't been feeling good. General feeling of blah, malaise, shakey, nausea, etc. It has come on gradually and Monday was probably my worst day. Also, for a couple of weeks my white count has been dropping. Today my neutrophils were only 0.5 so I am on the verge of being neutropenic again. By Tuesday my platelets had also dropped down to 155, from 199. Today the platelets were back up to 178, I am happy to report. My hematocrit is stable at 29, but my overall red count is down, too.

Because of the dropping counts, on Tuesday they changed my meds. Took me off Bactrim, which is known to drop counts, decreased my GenGraf and cut my Valtrex in third. Today I am actually feeling a little better, but because of the major white count drop, they are going to do a bone marrow biopsy tomorrow at 3:00. I'll be sedated for that, so nothing to eat or drink after breakfast. It will take about a week to get the results from that, and we are keeping our fingers crossed that the MDS is not trying to return. I am seriously hoping that all these things are side effects of the meds, and that the change on Tuesday will result in count changes, as well as how I feel, by next week.

So, all my visualising friends, I need to see more neutrophils and white cells! I'll appreciate any help and assistance, as well as prayers and healing thoughts.

On the good side, I am nearly two-thirds of the way to day 100. Here's to a great big beautiful tomorrow!
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10 September 2009

RANT: Facebook Chat

Dear friends, if you are trying to chat with me on Facebook, please DON'T. That stupid chat crashes my system every time. Even CTRL-ALT-DEL won't work. I have to physically hold down the power button with programs still running to get my computer to turn off. This is not a good thing.

At first it just wouldn't let me type responses. Then it started crashing my browser. Then it stopped letting me see who was even trying to chat and totally crashes my system. If anyone reads this and knows how to turn off Facebook chat, please tell me in comments on my blog or send me an e-mail. Don't tell me in comments on this note in FB, as I won't see it.

As soon as I find out how, I will go to FB and turn chat off! I'm leery of even opening FB anymore because I've been spending more time trying to shut off and restart my system than actually being online.
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Thursday ~ 10 September: Day 54

Wow, another week has passed. I am happy to say my red counts are looking better. On Tuesday my platelets had reached a count of 171 and my hematocrit had gone up all on its own from 29 to 30. This is good news. And you know what it means? I will likely not need more red cell transfusions, unless GvHD comes up when my blood type is changing over. But no more just for maintaining. We are thrilled.

My whites were down, but still in the normal range. I have no fever, but they think I might be fighting off some low grade infection, so they are watching me. Even though I will only be seeing the doctor once a week now, I still have to go twice weekly to the OTU clinic for labs. Did have to get magnesium by IV on Tuesday. I will be interested to see what my counts are tomorrow. Another thing they are watching is a possible rash on my hands and arms. It's very minor, so hopefully it will stay that way.

Sally came up Tuesday for Mike to go back home to get some work done there. They are trading places again this afternoon and he should be back shortly.

Yesterday Sally & I went to Home Goods and Michaels. I walked around Home Goods (part of the store only), but when we got to Michaels, she wheeled me around in the wheelchair shopping cart. I sure was glad. The store was in much disarray being rearranged and we had to do a lot of backtracking.

We found a few things on clearance, but mostly what we got was for Halloween. Finally picked up those Martha Stewart window silhouettes of the witch stirring the kettle and the spooky tree. I want to put those in the living room windows at home. I also want to make her Head Waiter Tray. It's been on the website for a couple of years or so and I think it's pretty cool. I needed some decopage medium for that. Another one of her ideas I'll be using this year is the green glass glitter skulls. Found some styrofoam skulls a little bigger than a softball, as well as the glitter and the glue. And did you know they make glow-in-the-dark glitter??? Halloween is one of my favourite holidays!

While in Michaels I had an episode where I thought I was going to be very ill. Sally said I turned fire engine red and was hot to touch. And I felt so sick and was tunnel visioning. She wheeled me to the water fountain and I put my wrists under the cold water. After a few minutes and much mental fortitude it finally passed. That took a lot out of me, but after resting for a few we finished our shopping there and persevered onward.

We were down in the Brentwood/Franklin area and decided to go check out some of the antique malls. The first one was too antiquey and not enough collectibles. And the second turned out not to be air-conditioned. The third one is one we've been to many times, but I wasn't able to spend much time there. I was just worn out. All in all we were gone from around 9:00a-3:00p. When we got home I ate a cheese sandwich and went to bed for a couple of hours to recoup.

All in all I've had a really nice visit with Sally and will be anxious to see her the next time she comes to stay with me.

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03 September 2009

Thursday ~ 3 September: Day 47

This past week has been one of my most fun weeks since I came to Nashville. Last Thursday my brother came by to see me on his way home to Indiana from Alabama. We only get to see each other about once a year, so that was a treat. Around 2:00 (and no crowds) we went out to eat at Blackstone's. That is the first time I've been out to a restaurant in about a month.

Friday I went to OTU clinic. My platelets and my white counts were still good. But even better, they detected new baby red cells. In my red blood, about 2 1/2% of the cells are the new ones. This is higher than what would normally be seen in a well person and wonderful news for me. It means my new bone marrow is responding correctly and making more red cells in response to the low numbers. My hematocrit was down to 30 and they had talked about giving me a transfusion Friday, but based on this info on new red cells, decided not to so they can track the new cells. I did have to get magnesium.

Saturday was my birthday. DD#2, Abbey, Donnie and Sally came up to see me. They brought gifts, a cake and homemade chicken and dumplings. As expected, my two darling daughters loved my red ottoman. Amongst other things, they got me some red pillar candles for the mantle, which go quite well with the ottoman and the throw pillows I already had here. Sally baked my grandmother's Lemon Cake for me and made my other grandmother's recipe for Chicken and Dumplings. That was so kind of her. And very handy to have a family cookbook! From Mike I got a new lens for my camera (AF-S Nikkor 10-24 1:3.5-4.5G ED DX). Now we need to go back to the Grand Canyon! He also got me a Frank Lloyd Wright book that I didn't have. Oh, and Donnie bought me some Milk Duds. All in all it was a great day! I loved getting to see the girls. I do miss my babies. And yes, I know they are not babies, but they will always be my babies. Since I had just found out about the engraftment percentages I decided that I turned 22 this year.

Tuesday I was back at clinic again. Platelets are up to 151,000. My white count was down slightly, but fluctuations are expected. My baby red cells were making up 3% of the red count. Looks like my bone marrow is doing a good job of trying to catch up. My hematoctrit was down to 29 and I'm a bit more tired, but we're still holding off on a transfusion. If my counts are still down tomorrow they are planning to give me one so that I will be OK over the long weekend. I had to get magnesium again on Tuesday.

Another thing Sally had brought Saturday were a bunch of heirloom tomatoes. These were plants I preordered in the spring before I knew I would not be able to garden this year. She planted them at her house and has been growing most lovely tomatoes. We've had panzanella several times and ate the last of them yesterday. Mmmm, Mmmm, good! Mike is going to be an expert on panzanella, tuna gravy, and fried green tomatoes before we leave here.

I've been wondering if my donor is vegetarian. I was for a number of years, but went back to eating seafood because I missed crab & shrimp. Occasionally I would eat poultry, though not often and once a year or so I might eat pork. Most of you who know me well, know I haven't eaten beef since 1984, and I have never missed it.

Now I am finding that except for tuna gravy, just the thought of most animal protein is actually making me feel nauseous. Today I wasn't feeling so great and asked Mike if he would just heat me up a can of chicken noodle soup. I couldn't even bear to look at the little pieces of chicken in the soup, much less eat them. And the one time I ate shrimp recently, it was all I could do to choke them down. Also, anything rich makes me feel ill. And I mean just the thought of it. I don't even have to try it for that to happen. Fruits, vegetables and grains don't bother me at all, so it's not a sign of GvHD that I am not eating. This is one of those things I am noting for future reference.

My cousin's daughter is getting married later this month and her portrait photos were made this past weekend at the Ft. Worth Botanical Gardens. My cousin sent me the link to the proofs. Aubrey is just beautiful and there are a couple of the pics that really show her playful personality. I know which one I hope they choose for the main portrait. Her bouquet is white hydrangeas, white roses, peach coloured callas and fuschia stargazer lilies. Did I mention she is wearing fuschia sequinned shoes under her long white dress? They are fab.

So I will leave you on this note. Day 100 is 21 October. If all goes well, I will get to go home next month! Doesn't that sound promising???

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