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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