27 December 2009

Sunday ~ 27 December: Day 162

Greetings all my blog friends! It is way past time for an update. In some ways the last couple of months have been very eventful and in some ways they've seemed very stagnant. First I want to say that I am improving. That is the most important thing. But often it has been two steps forward, one step back and such.

My shoulder problem had gotten bad enough that they had to double my dose of oxycodone. I wasn't able to sit up at the computer or even think straight sometimes with the medication like that. So I decided to go see my chiropractor, who is also a Chinese medical practitioner. For the last six weeks I've been getting chiropractic treatments as well as electric shock acupuncture. I can't do regular acupuncture with the needles, as I can't risk infection through breaks in the skin. The great news is my shoulder is much better. I am actually able to go some days without taking any oxycodone at all. That's a big improvement from every four hours!

When I first came home I had little to no strength or stamina at all. If I went anywhere away from home I had to be pushed around in a wheelchair. Now I am able to go out and do some things. Abbey even took me to Costco the week before Christmas. I had to ride around in their motorised cart, but just being able to get out and do something like that was great. Still haven't been to the grocery store, though. The girls are doing that shopping for us.

The last time I was at Vanderbilt they started me on a new prophylactic antibiotic to help prevent PCP pneumonia. It had unpleasant side effects, so now I am off that. My digestive system really got messed up and I started getting a lot weaker. Still haven't got the stomach stuff quite right, but I feel better today than I have in over a month. Also, my last bone density scan showed that I have osteoporosis and need treatment for that. They are recommending Reclast, which you get by IV once a year. Apparently all the chemo really did a job on my bones. It doesn't help that osteoporosis runs in my family. The good news is that hopefully I will be able to rebuild bone tissue. My 22 year old donor marrow ought to help with that, I should think! LOL.

My next appointment is this Thursday, the 31st. I'll have tests and some treatments. I also see the eye doctor to check on the graft vs host disease in my eyes. They seem to be doing a lot better, so I believe that treatment is working well.

I do find myself getting impatient with my limitations. They told me it could take a year or more before my strength gets back to normal. Often though, you hear words like that without really comprehending how it affects everyday life. I still haven't been able to stand up and cook a meal for us. The most I have done was yesterday morning when I made the sauce for Creole Shrimp. I think I may bring a stool to the kitchen to sit on and try to cook. Chopping veggies makes me tired and I'm not able to pick up the Staub and Le Crueset pots because they are too heavy. But as Mike pointed out, I am so much better off than I was this time last year. This year I even managed to send out our Christmas cards, which I was not able to do last year for the first time in my life. I need to work on having more patience.

Everyone's thoughts and prayers have been so much appreciated by both me and my family. I thank all of you from the bottom of my heart.

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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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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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25 August 2009

Tuesday ~ 25 August: Day 38

How time flies when you're having fun. LOL. So I've made it through the first month post-transplant. There have been some up days and some down days. I had OTU clinic appointments on Tuesday and Friday last week, but I didn't do any blog posts last week 'cause I just wasn't feeling so great. But I'm much better today. And I had another clinic appointment this morning.

First my counts ~
Platelets: 150,000 This is a wonderful, in the NORMAL range, platelet number. They weren't this high when I was first diagnosed back in 2005.
White Count: 5.6 Another good normal number (3.9-10.7 is the normal range.)
Neutrophils: 4.56 (1.4-7.7 is normal). I can't really count these as "normal" as I'm taking all these immunosupressant drugs. Still wearing my mask when I leave the apartment.
Hematocrit: 31. (36-43 is normal.) It was down to 28 last week. I was feeling tired and out of breath all the time, so they gave me 2 units of red cells. Those are holding pretty well, and I have felt stronger since getting them.

Last Tuesday I had my one month bone marrow biopsy. I was sedated, but they told me they had to stick me twice. YIKES. Still sore a week later. But the good news is the engraftment is working. Some of the results are back now. There are lots of things they look at to see if engraftment is happening and at what rate, and they check three main cell lines. They were hoping that by the first month I would be showing at least 60%, but hopefully more like 80% of my donor's cells to my cells.

The first cell line they checked for me is also my genetic karyotype. Because my donor is male, if the engraftment worked, then my karyotype changes from female to male. Well my friends, it is a miracle. I tested out at 100%. My karyotype will now always be male and I can never participate in the Olympics. The next line they checked came in at 96% donor cells. Every day I think positively and visualise my donor's cells replicating and making themselves at home in my bones. Becoming happy, healthy bone marrow to produce happy, healthy, and plenty of blood cells. 100% and 96% are way better than 80%.

There is a lot of other stuff they check and most of it is not back yet, but my doctor was just thrilled and I mean seriously. He is very laid back and quiet. Today he seemed almost giddy with excitement that I am doing so exceptionally well.

So my friends, I thank all of you. I know that all your intentions, prayers, good thoughts and communing with the universe have helped tremendously. I'm still weak compared to normal and have a long way to go, but right now this is amazing! My next OTU clinic appointment is Friday. They said if I am doing as well then as I am now, that they will likely switch me to only going in one day a week. Life is good!


P.S. When we left the clinic we went shopping. (Had to get in my walking for the day!) Mike bought me a beautiful red leather ottoman, ostensibly for my birthday, but mainly because we needed something like that here in the apartment. This will work great with my furniture at home, too. Did I mention it's red?
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16 August 2009

Eating from the summer garden

One of my earliest memories is following along with my grandfather, helping him plant tomatoes. My grandfather always had a huge garden. Not only did he feed his family, but numerous others besides. When the vegetables and fruits were coming in, my grandmother was always canning and freezing, as well as cooking the vegetables fresh. There were so many from which to choose as the season went by: onions, corn, tomatoes, squash, peas, okra, beans, plums, strawberries, cushaw, turnips, beets, collards, cabbage, beet greens, turnip greens, mustard greens, figs, watermelons, assorted peppers and whatever else may have taken his fancy that year. As I often spent summers with my grandparents, I helped with all this.

I learned canning, pickling and freezing from grandmother and later in college took classes in food preservation, where I also learned about dehydrating. This year I have missed being able to "put food by", as the old saying goes. The only food I have put by is some pesto I got in the freezer just before we came to Nashville. I will be grateful for small favours.

Along with putting food up for the winter, the greatest pleasure of the summer garden is eating freshly picked fruit and veggies. The other day while exploring, Sally and I found a farmstand selling locally grown organic produce. They had squash, tomatoes, onions, green tomatoes, purple hull peas, assorted pickles, watermelons and other things I can't recall at the moment. Dinner last night and lunch today were meals out of my past, but from the farmstand.

Dinner Saturday:

Fried Green Tomatoes

Lunch Sunday:
Peas, topped with fresh chopped tomato and onion

Sally had baked the cornbread, so Mike sliced and toasted that for us. He fried the green tomatoes himself (with only a little direction), and did the chopping of the onions and tomatoes. Peas he only needed to reheat. The watermelon was ice cold and cutting was all that was required to get it ready. I love summer vegetable and fruit meals. Especially when they taste like the meals with which I grew up. I could live on food just from the garden.

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13 August 2009

Thursday ~ 13 August: Day 26

And then she woke up with no hair on her head and said, "Oh good, I don't have to worry about fixing my hair today!" And then she went out and had a lovely day.

Sally came up yesterday to stay with me while Mike went back home. She cut the patchy hair I had left, then used clippers to shave it. My head feels so much better. Now I don't look like Einstein on a bad hair day.

Yesterday I was really tired and slept a lot off and on, sitting in the lounge chair watching HGTV. Then this morning I woke up feeling better. At clinic I found out I was low on magnesium, and got some of that by IV. My cyclosporin level (GenGraf - one of the anti-rejection drugs) is STILL too high, so I'm supposed to skip a dose and then start back with a lower dose tomorrow. One of these days it will settle down, I think.

And my counts: Drumroll, please! My platelets were 110,000. They haven't been that high since early January 2006, when we were still just watching my blood counts every few months. White counts are holding and no increase in red counts yet. But I was thrilled with the platelets! AND, I don't go back to clinic until Tuesday, which is the day I'm scheduled for my one month bone marrow biopsy. Skipping four days! I will almost feel as if I am on vacation.

I do have to work on regaining my strength. Mike and I are planning to resume our early morning walking. There's a quad right next to our apartments that is 6/10ths of a mile around. I am now able to do that and hope to add some more loops this next week. All this will get easier when I'm making my own red cells, but I am anxious not to feel so weak.

After clinic Sally and I drove around for a while just checking things out. It was nice to get out and about a bit. While we were out, we stopped at a farmstand of organic veggies and picked up some tomatoes, onions, a tiny watermelon and two jars of pickles. I'm looking forward to some ice cold watermelon tomorrow.

Mike got back around mid-afternoon and Sally headed back down south. I spent the rest of the afternoon looking through The French Chef. Julia Child was the best!

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09 August 2009

eBay Rant re: Photographs

All of us who use eBay have put up with a lot of changes this last year that we don't like. But this one just takes the cake. eBay is trying to legalise theft of our photographs! I am just furious about this.

Several years ago I had to deal with an unscrupulous seller who stole one of my pictures to try to fraudulently sell a post-86 Fiesta turquoise juice pitcher as an extremely rare vintage Fiesta turquoise juice pitcher. It was a nightmare, but finally eBay closed down their auction. But many people knew me, knew that was my photograph, and my reputation was at stake. I posted about it on all the message boards I could, so that people would know I was NOT saying the auction was for a vintage pitcher.

Now eBay is going to let anyone steal your photos. Actually, eBay is stealing the photos. And all under the guise of offering you a new program. And in their new program you are AUTOMATICALLY OPTED-IN.

As of 31 August, eBay is going to offer a photography catalogue of online images that any seller can use in their auctions. This catalogue is going to made up of any photos that have been uploaded to eBay from participating users. Since the default automatically lists me as a participating user, eBay now has unlimited access to my photos.

As an artist I am incensed! As a photographer I am incensed! As a buyer I am incensed! I don't care if they offer the program and let people opt-in if they want to do so. Some people will probably like it. But the default should not automatically put you in the program. The default should be opted-out. And as a buyer I want to see a photograph of the actual item I am buying!

To change this setting:
1. Log In and go to My eBay.
2. There are three tabs. Activity, Messages and Account. Click the Account tab.
3. Looking at the left sidebar, scroll down until you see Site Preferences under My Account. Click on Site Preferences.
4. Scroll down the page until you see Share Your Photos. Click the Show link on the right. If you are like everyone else I have talked with, your option says Yes.
5. Click Edit and you get a page with this:
If you'd like to opt-out of this program, please do so by checking this box and clicking the "submit" button below.
(If you opt-out before August 31, 2009, none of your photos will be considered for inclusion in this program unless you opt back in at a later time. If you opt-out after August 31, 2009, any photos we select for inclusion in this program prior to your opt-out may continue to be used in the catalog).

6. Click on the box to Opt-Out of the "program". Then click Submit to save your settings.
7. Go back and double check that under Share Your Photos your option says No.

This is just so sneaky, unscrupulous, and IMO theft. I have often given people permission to use my photos. And I have friends who know they can use my photos. But for eBay to AUTOMATICALLY ASSUME permission to use photographs is a breach of trust. Many thanks to my friend, Laurie, who alerted me to this eBay change.

Now that I have this mess fixed on my eBay account, I am going to take a deep breath and watch Melissa's new show on Food Network.

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08 August 2009

Saturday ~ 8 August: Day 21

Skipped a few days blogging. You know what they say about the best laid plans. Tuesday afternoon they tripled my dose of Valtrex. That afternoon I started feeling not just right. I was supposed to get to skip OTU Clinic on Wednesday and Thursday, but it was obvious by Wednesday noon that I needed to go in. I was having severe stomach cramping and nausea, as well as being very dizzy and weak. Mike was debating whether to take me to the wheel chair entrance, since he wasn't sure I could walk from Central Garage to the clinic. I wanted to try to get there under my own steam so we went our usual route. Had to stop and sit a couple of times along the way, and I was really huffing and puffing, but I did make it to the clinic on my own two feet. Whew.

My vitals were a little high, but not out of normal range, but because of the stomach issues they gave me Zophran by IV. That didn't help much and while they were waiting for labs I started throwing up. I hate to throw up. Yuck! When that was finally over, I did start feeling better. They then gave me compazine by IV. My labs came back showing my red blood was low (we knew it was) and they decided I needed to get a unit of those. That took several hours because I had to be typed and crossed before hand. Then they sent me back to the apartment with instructions on adding extra Nexium, compazine, or ativan by mouth, if necessary. Oh, and I had to go back to clinic on Thursday. Sniff. So much for my two days off. They wanted me to write down everything I was able to eat, though it wasn't much.

Thursday I was back to clinic. Still not back to normal, but improving. We have a new plan. Instead of taking a handful of pills all at once, I'm spacing out the morning meds over about 30-45 minutes. The transfusion really helped. I was still feeling weak, but not huffing and puffing like I was. Amazing what a few red blood cells will do for you. Labs showed my magnesium levels were low, so I got a dose of that and then got released. During the afternoon I continued to improve, but still not back to normal.

Friday morning I woke up actually feeling quasi normal again. Best I had felt in several days. I was able to not just walk in to the clinic on my own, but was also able to carry my laptop bag. Yea!!! All my labs looked good so we were done with clinic fairly quickly. Because I was still not back to normal on eating and how my stomach felt, they scheduled me for an upper GI endoscopy on Tuesday of next week. And they gave me the weekend off from clinic, with all the usual caveats. On Monday they will decide if I really need to get the test or not. Right now it is scheduled for 11:30 Tuesday. I have to be there at 10:00, NPO after midnight. I kept improving during the afternoon and last night was finally able to eat an almost normal dinner.

Today I woke up feeling good. Still kind of weak, though. I am working my way through my morning yoga exercises. Mike has gone for a walk to check out green spaces for us both to go walking.

So a few little setbacks, but I am not complaining. I have enough platelets I can do my yoga again. I have enough white cells and neutrophils that I can go see Julie/Julia if I go to a matinée with not a lot of people. It's showing at the Regal Green Hills and I'm thinking we might be able to go on Monday afternoon. No theatre popcorn though! Who knows when and how they cleaned their machine? I don't have enough neutrophils for that! Red cells will come along in time and the stomach issues seem to be under control. Life is good.

On a totally different subject, were she still alive, my Aunt Jean would be 81 today. Jean was my Papa's younger sister. I used to go stay with her when I was a little girl, and even as an older girl, and we would tell everyone she was my Mom. We looked amazingly alike. This is my aunt who let me eat birthday cake for breakfast and who would keep me up all night watching old movies - Fred Astaire, Humphrey Bogart, Katherine Hepburn. I got my love of old movies from her. And learned that "the rules" were sometimes made to be broken. Happy Birthday, Aunt Jean. I miss you.

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04 August 2009

Tuesday ~ 4 August: Day 17

We are on a roll. It's truly a miracle, of which Mike and I are in awe.

Today's blood counts:
platelets: 108,000
white blood count: 2.20
neutrophils: 1.44
hematocrit: 28
hemoglobin: 9

Friends, it has been over three and a half years since I have had counts like this. I almost have to pinch myself to believe it is real. Today the doc told me I can skip two days at clinic, as long as I promise to call them if we notice ANYTHING off. So of course, I promised. Life is good! I am so very lucky and I want to shout thank you from the rooftops to my donor.

My CRNP called this afternoon. My cyclosporine levels are STILL too high, so we're lowering the dose of that again.

Now that I have started engrafting we have to closely watch for Graft vs Host Disease. This normally starts in the skin and/or digestive tract. The first things to watch for are rash and sore mouth. From now through Day 100, GVHD and neutropenic fever are the biggest worries. They say nearly everyone gets GVHD to some degree. And a tiny bit of chronic GVHD would be good because that would keep the MDS from ever coming back. But I don't want acute GVHD.

Because my new 22yo bone marrow is producing cells, I also have to increase my antiviral medications. Most of us have some sort of viruses that live in our bodies all the time. I have CMV (not really sure what that is, but 70% of the people in the southeast have it), the virus that causes chicken pox/shingles, and the herpes virus that causes fever blisters. Once the new bone marrow starts making white cells, the resident viruses can flare up and cause a host of problems. Today they tripled my dose of antiviral meds. As time passes they will give me more antibiotics, too. It's all kind of a balancing act. And I'm making notes so I can keep all my visualisations up to date.

I'm still very weak and tire easily. Mike and I made dinner tonight together and he had to bring a chair into the kitchen for me to sit in every couple of minutes. This is not unexpected by the transplant team, but it's rather disconcerting for me.

I have a morning exercise routine that I got from a yoga teacher in VA Beach. Normally it takes about 15 minutes to complete this routine. I haven't been able to do it in months because I couldn't bend over and risk bleeding in my eyes or brain. Thought today, that this might be a good thing to start to help me get back to normal. Well, I got through it. But it took about 45 minutes because I had to rest between each of the exercises. Whew! I have a way to go. We're supposed to have waves of thunderstorms tonight with a low in the 70s. If it is not raining, I think we will go for a walk early in the morning and see how I can do at that.

Back to dinner. We had Southern Comfort Food: collard greens, peas with chopped fresh tomato and onion, and cornbread. It was so good. I did the cornbread, though Mike had to put it in and get it out of the oven. Cast iron is heavy, you know. LOL. The peas and collards were some I had put in the freezer last year, so they only needed thawing and heating. The tomato is one of the heirlooms Sally brought me that we grew and the onion is one of the little Vidalias I still had left from my last veggie box. Mike got the veggies all done for us, including the chopping. It's nice working together in the kitchen.

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Tuesday Meme ~ Can you answer these without fibbing?

I got tagged in a Facebook note with this one. Go for it. And be honest!

1 What's the last thing you put in your mouth? Iced tea

2 Have you ever kissed anyone named Matthew? Yes

3 Where was your default picture taken? the very first Starbucks in Seattle

4 Who was the last person you rode in a car with under the age of 20? Camryn

5 Can you play guitar hero? No

6 Last time you walked further than a block? Today

7 Name someone that made you laugh today? Annie

8 How late did you stay up last night and why? 11:30

9 If you could move somewhere else, would you? Yes

10 Ever been kissed under fireworks? Yes

11 Do you believe ex's can be friends? Yes

12 Do you like calling or texting better? Calling. My fingers get tired texting.

13 How do you feel about Diet Dr Pepper? It's great if you can get the original formula in glass bottles from the museum in Texas.

14 When was the last time you cried really hard? Honestly can't recall

15 Where is your biological father right now? cemetery

16 Where are you at right now? Nashville

17 What bed did you sleep in last night? mine in the apartment

18 What was the last thing someone bought for you? Starbuck's venti bold coffee of the day

19 Who took your profile picture? Mike

20 Who was the last person you took a picture of? Mike

21 Was yesterday better than today? not really

22 Can you live a day without TV? Of course. We went for a number of years without TV.

23 Are you a bad influence? Happily, yes. But I'm also a good influence.

24 What items could you not go without during the day? Camera, cell phone

25 Would you share a drink with a stranger? Never

26 Who was the last person you visited in the hospital? Besides myself? Probably my Mom.

27 What does the last text message in your inbox say? "No, but they want to talk to you, I'm sure."

28 What are you wearing? Soft purple namasté tee shirt, navy blue shorts, three pairs of earrings and a toe ring

29 How many times have you been pulled over by the police? Four times, I think.

30 If we were to look in your inbox, what would we find? food newsletters, eBay notices, messages from friends, Facebook notices

31 Has anyone ever called you perfect before? But, of course!

32 What song is stuck in your head? Thankfully none.

33 Someone knocks on your window at 2 am, who do you want it to be? Alladin. I'd really like to ride that magic carpet.

34 Who was your last missed call on your cell phone? Sally

35 Can you handle the truth? Yes. I'd much rather have the truth.

36 What was the last book you read? Misquoting Jesus

37 Is there something you always wear? My emerald earrings that Mike gave me and a toe ring the girls gave me.

38 Have you ever crawled through a window? Yes

39 What's something that can always make you feel better? My dear darling daughters

40 What do you want right now? Fried green tomatoes. Alas, there are no green tomatoes in the apartment. Maybe tomorrow.

41 Look behind you, what do you see? Headboard of the bed.

42 Have you ever worked in a food place? No
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02 August 2009

Sunday ~ 2 August: Day 15

Oh what a glorious day. My platelets are 84,000. My neutrophils are up to 0.74. Today was my last day of Invanz, the IV antibiotic. Everything is going well, so tomorrow is the first day I get to skip clinic. I think they consider me engrafted! Yea!!! Still not making red cells, but that will come. They're checking my cyclosporine levels today and I will know tomorrow how I need to adjust the dose.

Sally and I had a good visit. She has gone back home and Mike is back up here.

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Gimme a head with hair, long beautiful hair
Shining, gleaming, steaming, flaxen, waxen
Give me down to there, hair!
Shoulder length, longer (hair!)
Here baby, there mama, Everywhere daddy daddy

Hair! (hair, hair, hair, hair, hair, hair)
Flow it, Show it;
Long as God can grow it, My Hair!

I want it long, straight, curly, fuzzy
Snaggy, shaggy, ratty, matty
Oily, greasy, fleecy, shining
Gleaming, steaming, flaxen, waxen
Knotted, polka-dotted; Twisted, beaded, braided
Powdered, flowered, and confettied
Bangled, tangled, spangled and spaghettied!

O-oh, Say can you see; my eyes if you can,
Then my hair's too short!

HAIR opened on Broadway in 1968. In the fall of 1969 (I was 15) I was lucky enough to get to see it live on stage in Chicago. Now I was not old enough to get in on my own, but went with some friends who were already 18. I have to say, for a little girl from a small town in the south, it was quite an experience to go to a stage show and see actors running around naked!

HAIR was great and such a product of it's time. It told the story of a group of politically active, long haired hippies, true members of the Age of Aquarius, fighting against being drafted and sent to Vietnam. A number of the songs became hits. Hair, Aquarius, Good Morning Starshine, Easy To Be Hard, and Sunshine all came from HAIR.

I've always had a thing for hair. My hair was very long until my niece cut, curled and made it red for me last month.

See Becky. See Becky's hair come out. The last day or so I've been noticing it was shedding a bit, so this afternoon I sat for a little over an hour, gently pulling and removing whatever would come out and putting it in a Ziploc bag. There is still hair on my head, but it is quite thin and patchy. I think I'm going to see if Kiki can come up this week and work on it for me. So I'll leave you with this little story, which I quite like. It came to me in e-mail.

One day a little old lady woke up and saw she had three hairs on her head. She said, "Oh good. I think I'll braid my hair today." And she went out and had a wonderful day.

The next morning she woke up and saw she had two hairs on her head. She said, "Oh good! I think I'll wear my hair in pigtails." And she went out and had a wonderful day.

The next morning she woke up and saw she had one hair on her head. She said, "Oh good! I think I'll wear my hair in a ponytail." And she went out and had a wonderful day.

The next morning she woke up and saw she had no hair on her head. She said, "Oh good! I don't have to worry about fixing my hair today." And she went out and had a wonderful day.

My friends, I hope no matter what the status of your hair is, you have gone out and are having a wonderful day!

Peace, love and namasté,
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01 August 2009

Saturday ~ 1 August: Day 14

They tell me there will be ups and downs. Yesterday afternoon and today have been spent working on getting better levels of my anti-rejection drugs. The cyclosporin has gotten up to toxic levels again and I've been having all the attendant side effects. Nausea, dizziness, shaking, some vision stuff. So I'm taking meds to help ameloriate some of those. And some of those meds make me fall asleep. Hopefully we can get the correct dose figured out soon.

On the GREAT side: My platelets were up to 64, this morning (64,000). Last time I had levels that high was back around Thanksgiving 2007. My white count was 1.0, up from 0.6. Didn't get my neutrophil count today. My hemoglobin went from 8.8 yesterday to 9.7 today. We know the counts will bounce around, but for now I'm just being happy with the upward trend.

Sally is caretaking me this weekend, so that Mike could go home, see the girls, etc. I slept all afternoon, but that gave Sally some time just to relax. I don't think she gets to do much of that at home. Have to say it was more fun the last time she came to caretake me and we went antiquing! LOL. Maybe next time.

Dinner tonight was take-out from PF Changs. I finally felt like eating something and vegetarian lettuce wraps sounded good to me.

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