31 July 2009

Friday ~ 31 July: Day 13

OK peeps, this news is too good to wait to share. My platelets are up to 48. That is 48,000! I haven't had that high of a platelet count in 16 months. When we went to Italy last summer I was in the 30,000 range. This has to be on my own as I didn't get a transfusion yesterday. And my neutrophils are up to 0.15. Those are a little more than doubled since yesterday. Red count is down another point, but those are typically the last to come back up. I knew this was a Fabulous Friday.

Interesting note: Mike keeps a spreadsheet of all my medical stuff. One of the things he tracks is when I get blood products and how much I get. We have never totalled that, but yesterday a man here in the clinic asked how much blood had I been given. Last night Mike ran totals for me. I did not have to start getting platelets until after I started Vidaza treatments last summer. Since then I have received 113 units of platelets. I first got red blood back in December of 2007, before we went to DisneyWorld for Christmas. All in all I have had 91 units of packed red cells. Let me take this opportunity to give a heartfelt

to everyone who donates blood. I am alive today because of all these wonderful people.


Now we are at the clinic waiting for my Invanz. It has to be mixed up in the pharmacy after I arrive at the OTU clinic. Oh, and now it has arrived.

namasté,
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30 July 2009

Thursday ~ 30 July: Day 12

Well today was an interesting day. I felt a lot better this morning when we went over to the OTU clinic. They did my vitals and blood work. While we were waiting on the results and the doctor, I was hooked up to my morning dose of cefepime (IV anti-biotic). Immediately things started going black and I couldn't breathe. A lot like when I had a reaction and found out I was allergic to penicillin. The IV was immediately stopped, they got me on oxygen and gave me something in my IV. I also got nauseous and a few minutes later they gave me IV compazine for that. After 10 minutes or so I was feeling much better. So scratch that drug. There had been some discussion about even giving it to me when I was in the hospital back in February because of some similarity is has to penicillin. But I had it then with no problems and have been taking it for a little over a week this round. This was the drug Mike was having to hook me up to for a nightly dose also. I sure am glad I didn't have this reaction at home. And I hope I've had my quota of anaphylactic type reactions!

Now I have a new antibiotic, ertapenem, aka Invanz. I've had that quite a few times with no problems. It will be given once a day only until I engraft, and will be given to me by the nurses in the OTU clinic. That makes me feel better.

And speaking of engraftment: my red count was down another point today. My platelets were 29, but I had a transfusion yesterday. We can't really see anything from that number. White count was 0.3 and those ever so important neutrophils finally had a positive count: 0.07. At home that would have been rounded up to 0.1. They tell me that the counts won't go in a continuous upward motion, that there will be hills and valleys until I am engrafted, but to see anything is such a miracle to me. It makes it hard not to be able to send a thank you to my wonderful donor. I am continuing to think positively and am visualising new bone marrow making itself at home in my bones, cranking out new blood cells.

My arm was really sore with the new Picc line, so I reluctantly took two oxycodones. My nurses keep telling me there is no need to hurt with everything else going on, so I finally took them at their word. The two pills worked great, and I'm hoping my arm will just feel better tomorrow. Other than that, I'm still a little shaky, but as the toxic levels of the anti-rejection drug go down, that should get better. My headache is already pretty much receded.

Dinner tonight was Cancun Shrimp: roasted jumbo shrimp, sliced avocado, cocktail sauce and saltine crackers. Yummy supper for a summer evening. We roasted the shrimp yesterday, but I don't think we will do them that way again for shrimp cocktail. Didn't really care for the olive oil on them to eat cold.

namasté,
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29 July 2009

Wednesday ~ 29 July: Day 11

Lots has been going on since my last transplant post. Everyday we get up, go to clinic, get vitals and blood tests. I have had to get platelets every day until yesterday. On Sunday I had to have a unit of red blood, a couple of times I've had to have potassium and both yesterday and today I had to have magnesium through IV. A side effect of one of the anti-rejection drugs is high blood pressure. My blood pressure went up from it's normal 115/70 to 145/95! Yikes. Now they've got me on blood pressure medicine and it's getting back closer to my normal.

There are other side effects if the level of the anti-rejection drug gets too high: headache, trembling, nausea, dizziness, weakness, and other such things. We're still adjusting the dose of that to get it to the right level. The combination of too much of the anti-rejection med and not enough magnesium got me to where I was barely able to walk from the parking garage to the clinic today. And at that I still had to stop and rest on the way inside. I couldn't even carry my camera, which was a bit scary. I was amazed at how much better I felt after getting magnesium today. Almost like a switch flipped. Still not up to normal activity, but much better than yesterday and this morning. Yesterday I had to take Ativan and oxycodone, but did not need those for side effects today.

Today was weekly Picc line bandage change day. The nurse noticed my line looked like it was out too much. And indeed it was - over 2" from when it was inserted. This is not good. That means the end of my line was not where it was supposed to be. Instead of in the heart it was out in the vein. Boo hiss. Sarah, my CRNP today, consulted with the transplant doc and the Picc team. They decided I needed a new Picc line.

In the meanwhile I have had blood tests. This is significant. Day before yesterday my platelets were less than 10 so I had a transfusion. Yesterday my platelets were 16. We were excited because that means my platelets held. That hasn't been happening. So I didn't get a transfusion yesterday. Today my platelets were 19. NINETEEN. They went up. Without a transfusion. And my white count (not neutrophils, but total count) went up from 0.0 to 0.1 Reds have dropped some. But for my platelets to go up like that, and to get any white count, it means that my donor's cells are beginning to find their home and make new blood cells for me. We are so thrilled! Not engrafted yet, but it's a baby step forward. And especially good news after I've felt so crummy, sick and weak.

Originally the plan was for me to wait until tomorrow to get magnesium and possibly platelets. However, once the Picc line switch was necessary I chose to go ahead and get platelets today before the procedure. And as long as I had to wait for platelets, I got the magnesium, too.

So, since I had to get the new line we had to move back to the right arm which is where the first Picc line was. The first one was in the brachial vein and the new one is in the basillic vein. First they had to ultrasound my arm and see if my vein was good. It was. Here, instead of a radiologist, a team of nurses insert and remove Picc lines. It was much simpler here. Plus I took an Ativan and oxycodone before I went down to the radiology clinic. One nurse very quickly and competently put in my new line. They took me to X-ray to see if it was properly positioned. As it was in perfectly the right spot another nurse from the Picc team took out my old Picc line. Amazingly I didn't even realise she had pulled it out. I certainly didn't look, you know!

At that point, 2:00ish pm, we were free to go until tomorrow. We came home then and Mike fixed us some lunch.

And speaking of Mike and cooking, he has been doing an amazing job. We have jointly done a few meals: brioche French toast with sausage, Texas potatoes (baked potato topped with turkey chili, onions and cheese), Mezzi Rigatoni (which we actually made with gemelli), tuna gravy and roasted shrimp. The shrimp are planned for tomorrow's lunch so they got roasted and refrigerated today. Some of the things he has made way out of his comfort zone are: Greek Pizza, omelette with ham and cheese, biscuits, spanakopita turkey burgers, and a picnic to eat in the park. Yes, the park. A couple of days last week we went over to Centennial Park, either to walk or eat lunch. Our picnic consisted of several cheeses, dolmas, crackers, bottled water, and palmiers. It was a lovely meal and we sat at a table with a view of the Parthanon.

One thing I have learned is that if we must rely on Mike to literally put the food on the table on a long term basis, we will likely be eating out of cans and the freezer. Because he never does things that require skills such as chopping onions, it takes him a lot longer. And he does not like to cook. not at all. So our partnership has a good division of labour. I LOVE to cook.

Now it's evening and both of my arms are sore. The right one with the new line more than the left. Had to leave the hospital with a pressure bandage on my left arm and instructions to take it off after a couple of hours. The regular bandage needs to stay on for 24 hours. I may take a pain pill so I can sleep.

So all in all, I would say that today was a good day. Were he still with us, it would be my little brother, Frank's, 52nd birthday. What a wonderful day for my engraftment to start!


P.S. I still have my hair.
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25 July 2009

Saturday Meme ~ What movie star are you?

I am in the OTU clinic waiting for platelets and to see the doctor. Got this one in e-mail, but instead of forwarding will post it here. Feel free to lift, should you like. And according to this quiz, I am Katherine Hepburn.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Ever wonder which movie star you are most like? Well, a team of researchers got together and analyzed the personalities of movie stars.The gathered info has been incorporated into this quiz.

There are only 10 questions so it doesn't take long. Number your paper from 1 to 10, then answer each question with the choice that most describes you at this point in your life. Then add up the points that correspond the your answers.

1. Which describes your perfect date?
a) Candlelight dinner for two
b) Amusement Park
c) Rollerblading in the park
d) Rock Concert
e) Have dinner & see a movie
f) Dinner at home with a loved one

2. What is your favorite type of music?
a) Rock and Roll
b) Alternative
c) Soft Rock
d) Classical
e) Christian
f) Jazz

3. What is your favorite type of movie?
a) Comedy
b) Horror
c) Musical
d) Romance
e) Documentary
f ) Mystery

4. Which of the following jobs would you choose if you were given only these choices?
a) Waiter/Waitress
b) Sports Player
c) Teacher
d) Policeman
e) Bartender
f) Business person

5. Which would you rather do if you had an hour to waste?
a) Work out
b) Make out
c) Watch TV
d) Listen to the radio
e) Sleep
f) Read

6. Of the following colors, which do you like best?
a) Yellow
b) White
c) Sky blue
d) Teal
e) Gold
f) Red

7. Which one of the following would you like to eat right now?
a) Ice cream
b) Pizza
c ) Sushi
d) Pasta
e) Salad
f) Lobster Tail

8. Which is your favourite holiday?
a) Halloween
b) Christmas
c) New Year's
d) Valentine's Day
e) Thanksgiving
f) Fourth of July

9 If you could go to any of the following places, which would it be?
a) Reno
b) Spain
c) Las Vegas
d) Hawaii
e) Hollywood
f) British Columbia

10. Of the following, who would you rather spend time with?
a) Someone who is smart
b) Someone with good looks
c) Someone who is a party animal
d) Someone who has fun all the time
e) Someone who is very emotional
f) Someone who is fun to be with

Now total up your points on each question:
1 a-4; b-2; c-5; d-1; e-3; f-6
2. a-2; b-1; c-4; d-5; e-3; f-6
3. a-2; b-1; c-3; d-4; e-5; f-6
4. a-4; b-5; c-3; d-2; e-1; f-6
5. a-5; b-4; c-2; d-1; e-3; f-6
6. a-1; b-5; c-3; d-2; e- 4; f-6
7. a-3; b-2; c-1; ;d-4; e-5; f-6
8. a-1; b-3; c-2; d-4; e-5; f -6
9. a-4; b-5; c-1; d-4; e- 3; f-6
10. a-5; b-2; c-1; d-3; e-4; f-6


NOW . take your total and find out which Movie Star you are:


(10-17 points) You are MADONNA:
You are wild and crazy and you know it. You know how to have fun, but you may take it to extremes. You know what you are doing though, and are much in control of your own life. People don't always see things your way, but that doesn't mean that you should do away with your beliefs. Try to remember that your wild spirit can lead to hurting yourself and others.

(18-26 points) You are DORIS DAY:
You are fun, friendly, and popular! You are a real crowd pleaser. You have probably been out on the town your share of times, yet you come home with the values that your mother taught you. Marriage and children are very important to you, but only after you have fun. Don't let the people you please influence you to stray.

(27-34 points) You are DEBBIE REYNOLDS :
You are cute, and everyone loves you. You are a best friend that no one takes the chance of losing. You never hurt feelings and seldom have your own feelings hurt. Life is a breeze. You are witty, and calm most of the time.. Just keep clear of back stabbers, and you are worry-free.

(35-42 points) You are GRACE KELLY:
You are a lover.. Romance, flowers, and wine are all you need to enjoy yourself. You are serious about all commitments and are a family person. You call your Mom every Sunday, and never forget a Birthday. Don't let your passion for romance get confused with the real thing.

(43-50 points) You are KATHERINE HEPBURN:
You are smart, a real thinker. Every situation is approached with a plan. You are very healthy in mind and body. You don't take crap from anyone. You have only a couple of individuals that you consider 'real friends'. You teach strong family values. Keep your feet planted in them, but don't overlook a bad situation when it does happen.

(51-60 points) You are ELI ZABETH TAYLOR:
Everyone is in awe of you. You know what you want and how to get it. You have more friends than you know what to do with. Your word is your bond. Everyone knows when you say something it is money in the bank. You attract the opposite sex. Your intelligence overwhelms most. Your memory is the next thing to photographic. Everyone admires you because you are so considerate and lovable. You know how to enjoy life and treat people right.
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22 July 2009

Engraftment

We've all so looked forward to Day Zero and my transplant. So we got past that. Now what? They tell me this will be the hard part. My bone marrow was ablated with the chemo, so it is gone, making no blood. Now I take lots of anti-rejection drugs every day. And every day we wait for engraftment. Engraftment is when the cells from my wonderful donor take up residence in my bones and start producing blood cells. And we watch for Graft vs Host Disease. With my type of transplant engraftment is looked for around Day 21, though it has been known to happen as early as Day 14.

Because I have nothing making blood, I have to get regular transfusions of both red cells and platelets. I got red cells in the hospital Sunday (Day 1) and have been getting platelet transfusions every day. The platelets have not been holding. Preferably I would not need transfusions every day, but rather every third or fourth day. Before today's transfusion my count was 10. After the transfusion the count was 37. That is an excellent bump, so we hope it will not be back to 10 tomorrow. Have to totally wait for engraftement for any white cells (including those all important neutrophils).

Every day they check me by looking at my skin and such for signs of Graft vs Host Disease. It's really early for that, though. The doc says I want just a little bit of that so that the MDS won't come back, but too much would be bad. So for now it is waiting and a balancing act.

Positive thinking!!!
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Getting to know you meme

I've gotten tagged with this several times on Facebook, so will post the meme here.

Getting to know each other!
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If you've been tagged or you are reading this, you have the honour of copying all these goofy questions, writing your own response, and tagging 25 other victims. You have to tag me so really you just need 24 more people. If I tagged you, it's because I want to know more about you - but not in a creepy stalker kind of way.

To do this, go to “notes” under tabs on your profile page, paste these instructions in the body of the note, type your title as "Getting to know each other!", tag 25 people including me (tagging is done in the right hand corner of the app) then click publish.

1. What time did you get up this morning? 2:40 the first time when the weather radio started giving us a weather report for no apparent reason. Then went back to sleep till 6:00.

2. How do you like your steak? I don't eat dead cows.

3. What was the last film you saw at the cinema? Pirates of the Caribbean ~ At World's End

4. What is your favorite TV show? Divine Design

5. If you could live anywhere in the world where would it be? I'm partial to warm weather and the ocean, so somewhere tropical with a beach sounds pretty good. I also love the Lake Como area of Italy.

6. What did you have for breakfast? Almond pastry and coffee

7. What is your favorite cuisine? Creole/Cajun, Italian, Spanish, Moroccan, Greek

8. What foods do you dislike? offal, beef, greasy stuff

9. Favorite Place to eat? Mezza Luna, Tin Angel

10. Favorite dressing? Roquefort

11. What kind of vehicle do you drive? Chrysler Sebring convertible

12. What are your favorite clothes? Jeans & a girly T-shirt

13. Where would you visit if you had the chance? Egypt and Greece

14. Cup 1/2 empty or 1/2 full? 1/2 full

15. Where would you want to retire? our farm

16. Favorite time of day? early morning

17. Where were you born? Vicksburg, MS

18. What is your favorite sport to watch? figure skating

19. Who do you think will not tag you back? no idea

20. Who do you expect to tag you back first? another no idea

21. Who are you most curious about their responses to this? I'm interested in all my friends.

22. Bird watcher? Oh yes. I keep a guide handy by my desk.

23. Are you a morning person or a night person? Morning person, for sure.

24. Do you have any pets? Not sure how to answer that, as the parrots are not living with us now.

25. Any new and exciting news you'd like to share? I'm at Day 4 post transplant and doing really well so far.

26. What did you want to be when you were little? a nurse

27. What is your best childhood memory? spending time at my great-grandmother's

28. Are you a cat or dog person? Birds first. Then cats.

29. Are you married? Yes

30. Always wear your seat belt? Always

31. Been in a car accident? Yes

32. Any pet peeves? Yes

33. Favorite Pizza Toppings? kalamata olives, sun-dried tomatoes, fresh mozzarella, basil

34. Favorite Flower? "And then my heart with pleasure fills and dances with the DAFFODILS."

35. Favorite ice cream? homemade fig

36. Favorite fast food restaurant? Can't think of a single one.

37. How many times did you fail your driver's test? Never

38. From whom did you get your last email? Duke UniversityTIP program

39. Which store would you choose to max out your credit card? None

40. Do anything spontaneous lately? I do spontaneous things all the time.

41. Like your job? Of course

42. Broccoli? Yes

43. What was your favorite vacation? Italy last summer with my whole family

44. Last person you went out to dinner with? Spousal Unit

45. What are you listening to right now? Maxwell's Silver Hammer - The Beatles

46. What is your favorite color? Red

48. How many are you tagging for this quiz? I'm posting it on my blog, so lots.

47. How many tattoos do you have? not one

48. Where's question 48?????

49. What time is it? 4:33p

50. Coffee Drinker? Yes
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21 July 2009

Tuesday: Day 3

Today set the tone for the next several, I think. Woke up taking handsful of pills. Then over to the OTU Clinic for vitals, blood tests, visit with CRNP and transplant doctor. My platelets were less than 10, so that means I needed a transfusion. They really want my low number to be 20, but we're having trouble getting it there. To get HLA matched platelets, they have to come from the Red Cross. They said that would take a couple of hours, but actually it was over 3. And today I got my first platelets from an A person. No reactions, thankfully. I also have to increase CellCept (one of the anti-rejection drugs) to increase my blood levels of that. So we spent the morning at the clinic mostly just waiting. My blood pressure also went up pretty high (150/90), but they let me leave with the promise to call if I didn't feel well.

I am allowed to eat restaurant food if the kitchen has a 95+ health department rating. We went to Blackstones' Brewery to get lunch. I had fish & chips and Mike had chicken with black beans and wild rice pilaf. They really do make good fish.

When we got home we sat out in the apartment courtyard for awhile. Then came up to the apartment to rest. I was going to take a nap, but my Mom called. She is in the hospital in Huntsville. Mostly as a precaution, but she has bronchitis and was having a lot of trouble breathing, so no one wanted to take any chances on it turning into pneumonia. Hopefully she will get to go home in the next day or two.

More pills during the afternoon. Then Mike and I cooked dinner. No platelets really does mean no playing with knives. We collaborated on a chicken noodle casserole. Mike chopped the onion and bell pepper and together we put it together. Also had the rest of the tomato crumble. I cannot have leftovers that are over 24 hours old, so we are trying to cook accordingly. And we have plenty of unsweetened tea!

I am feeling better tonight. Hopefully every day I'll continue to get stronger. I've taken all my meds for today and haven't felt nauseous since this morning, so that is a good thing.
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20 July 2009

Monday: Day 2 ~ Part II

Good evening friends! I didn't get to leave the hospital as early as we thought, as I had to have IV antibiotic and a unit of platelets before I could go. I think we actually left around noon time. We got back to the apartment and Mike fixed me a tuna salad sandwich. Then I fell asleep for the first real, uninterrupted sleep I've had in several days. I'm still feeling kind of tired and sluggish. Think my 22yo was out partying? LOL.

So now comes the hard part and the wait. These are the drugs I am on daily: anti-rejection (2 different ones), antibiotic (1 oral, 1 IV), anti-viral, anti-fungal, Nexium, compazene (as needed), oxycodone (as needed), Ativan (as needed). And that's it, I think. The IV anti-biotic is interesting. Mike attaches it to my Picc line. It looks like a clear balloon inside a little baby bottle. It's under pressure, so after it's attached and the balloon collapses, the antibiotic is finished going in. The first one is nearly finished now. Pretty cool way to administer. No IV pole, gravity, etc. needed. Some of these things I take several times a day. Only one just once. Mike made me a simple chart on the computer to help me track everything.

Dinner!!! I have a superb food report. Mike cooked dinner. Now this is a really big deal because Mike doesn't cook. Not bbq or anything. But he is willing to try to cook anything I felt like eating. And I felt like eating Tomato Crumble. I can't tell you when I've tasted anything better. And it was so nice to have a hot meal. None of the hospital food was ever more than luke warm. Seeing something come steaming hot out of the dish was a treat. Sally had brought me heirloom tomatoes she had grown. And there is basil in a pot on our balcony. I'm sure that added to the flavour. I thought it was food of the gods. And he served it on our pretty coloured Harlequin dishes.

Currently my schedule will be to go to the OTU clinic every morning. I'm on the early schedule so will be there @ 7:30ish. They will do blood tests every day. Have to check many things, including the level of one of the anti-rejection drugs. May have to play with the dosages of that one. So I take my morning dose with me to take after the blood draw. And because I'm keeping no platelets, I'll have to have platelet transfusions every day for a while. The Red Cross is HLA matching me for platelets now, but that will take several days to go into effect. Hopefully they can find matched ones for me, which will hold for a day or two. We're thinking positively.

They also run the standard tests to see when my new bone marrow has started producing cells. It won't do that until the cells have engrafted - as in settled in my empty bones and taken up permanent residency. When the new cells are engrafted and producing the new blood cells we will celebrate. This can happen as early as 14 days, but more likely it will be three weeks or so. Meds keep getting adjusted all this time.

I'm feeling a bit tired, so will go to bed soon. Don't forget tomorrow morning is free pastry at Starbucks until 10:30a. I'm looking forward to either a blueberry scone or a cheese Danish.
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Monday: Day 2

Well, it's 3:30am the morning of Day 2. I still feel kind of like I'm moving through molasses, but at least my fever is down in the 99.something range. What I mainly feel is hot with a headache. I'm going to work on feeling better as the morning progresses.


time passes....8:15a...My temp is staying down. I'm still sort of draggy, but I haven't had fever in 24 hours. They want to xray my head because of this constant headache. I'm getting no boost from platelets, so they want to be sure I have no bleeding in the brain. I know I had a hard time after the transplant. There are a good 12-20 hours I don't remember. But I really do feel better now. And most everyone feels better in their own home than in a hospital. I have gazillions of pills to take. May have to make a spreadsheet for those. But I am sure Mike and I can come up with better food than what comes from the kitchen here.

time passess... 9:30a... OK Peeps. Grab your bags, we're making a clean getaway!!! I'm going with all sorts of caveats. And I have to get an IV antibiotic before I leave. But I get to leave the hospital and go back to the apartment. I feel so incredibly blessed.
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Sunday: Day 1

So I've made it across Day Zero to the positive side. Birth is not easy the first time and I'm not sure why I thought it should be easier the second. I've been out of it a lot the last 36 hours, but will try to give a synopsis.

Sally, Abbey, and Donnie came up to join Mike and me for the Big Event. I had already bee pre-medicated when they arrived, but was able to appreciate the little mylar happy birthday balloons they brought me. Around 2:20p on Sunday is when they brought in my two bags of life. They came with all kinds of tags, which I've been given for my scrapbook. The bags of cells are administered like any other transfusion, though the contents look different. The concensus was the cells in the bag look like a strawberry daquiri.

First bag started slowly and went in fine. About 2/3 through the second bag I started to feel cold. Uh oh. I know that feeling! The next 24 hours are pretty fuzzy to me. I kept spiking fevers, having chills, and getting dosed with all sorts of IV drugs. Also felt very nauseous with a bad headache. They're keeping me on oxygen because my heart and breathing rate are going way down when I'm asleep. And in the midst of all that, I also developed an irregular heartbeat. The latter seems to have calmed down and I don't have to be on that constant monitoring now. Got rid of those yesterday afternoon sometimes.

Food on Day 1:
1. one mini cinnamon roll and coffee
2. 1/2 cup vegetable soup
3. cottage cheese and canned pears

Doesn't sound like the most exciting birthday food, but hey. I could tolerate it. I did wake up for a bit on Sunday afternoon, but wasn't up to doing any blog posting. Felt like I was trying to move through thick molasses and everything had dull edges.

They tell me this is because I am switching from O positive blood to A positive blood. The two different blood types are vying for position and the A is winning. Thanks to my wonderful donor.

People made photos at the start of the transplant. I will see if any are suitable for posting.

Thank you all so very much for your continued care and support. They tell me the hardest part is going to be the next 100 days. I'm thinking positively!!!
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18 July 2009

Saturday: Day ZERO ~ Part II

Let's try a new tone for Day Zero - my second birthday. The first day of the rest of my life. They tell me I will get a T-shirt that says, "Life Begins at Day Zero". This is a Pointer Sister day. "I'm so excited. And I can't deny it....." Plus I slept for few hours.

My Life According to Jimmy Buffet gave me the bright idea to turn on iTunes. I have every album Jimmy Buffet has ever made, as I have been a fan for years. Long before he was popular, when he was playing in little bars and coffee houses around the South, I went to hear Jimmy and the Coral Reefer Band sing and play. Sometimes when he'd come to our school there wouldn't be but a dozen or so of us in the audience. They'd sit around with us between sets, drinking and talking. It was a wonderful time. So I have well over a gig of Jimmy tunes that will play for around 20 hours. Jimmy got my heart rate up to over 45, or else drowned out that beeping enough for some sleep. The beeper has now been reset to 37 as I've dipped to 38 several times. I really think it because I meditate and am so relaxed. (See This day I remain calm and relaxed. in affirmation list). People who practice meditation regularly have a slower heart rate. And I am really into the zen of this now.

I've actually done meditation for many years, but consistently for the last five or six. Part of my meditations includes affirmations. This is one of my favourite morning affirmations and I have started Day Zero out with it.

Morning Affirmation
This day I am strong.
This day I have greater physical and spiritual energy.
This day I remain calm and relaxed.
This day I think more clearly.
This day I understand more of what I perceive.
This day I have only constructive emotion.
This day I feel great.
This day I live in service and help to others.
This day I assume authority and accept responsibility for myself.
This day I perform my intended purpose.
This day I am more than my physical body.
This day I remember better who I am.

My CRNP (Anne here in the hospital) came in and said they are probably going to move the transplant up to 1:00p as that will give plenty of time for the Thymoglobulin to clear my system. I have had no bump in platelets for the last three bags. The protocol will now be to just give me a bag a day on general principal, and have the Red Cross do HLA typing for me. That typing can't be done on the weekends, so it would be Monday before they can start doing it. They have my HLA typing because of the transplant, so typing will be done on platelets that come in looking for a good donor for me.

Also, my nurse says the reason I am probably not sleepy is all the steroids they've been giving me. Not being a person who does much with steroids, I wasn't really aware of that side effect. Knowledge is a good thing.

I've had a good breakfast. (This day I have only constructive emotion.) I have discovered that the menu list they give you here is pretty much like the Pirates Code. Sort of a guideline. I can live with that, now that I know what it is. Breakfast was pancakes, syrup, sausage, Rice Krispies, whole milk and orange juice. A very nice lady brought it to me and I ate it thinking of the nutrition it is providing me. (Don't laugh! I worked really hard at that one!!!!) Mike is on his way over from the apartment with a large Starbuck's mug of freshly ground, freshly made coffee. That will be delightful. My first cup of the day.

Sally and I talked a few minutes ago. She was asking me was I all excited. And I really am. The anticipation of this day has been here for so long and now, Here it is! I am so very grateful to my young donor. He has given me a gift beyond price.
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My Life According to Jimmy Buffet ~ Saturday Meme

Using only song names from ONE ARTIST, cleverly answer these questions. Pass it on to 15 people you like and include me. You can't use the artist I used. Try not to repeat a song title. It's a lot harder than you think! Repost as "my life according to (artist name)". I'm just posting this on my blog, rather than sending. Feel free to do the same.

Pick your Artist:
Jimmy Buffet

Are you a Male or a Female:
They Don't Dance Like Carmen No More

Describe Yourself:
Only Time Will Tell

How do you feel:
I Will Play for Gumbo

Describe where you currently live:
Stars Fell on Alabama Last Night

If you could go anywhere, where would you go:
Margaritaville

Your Favorite form of Transportation:
Rag Top day

Your Best Friend is:
Growing Older But Not Up

You and your best friends are:
We Are the People Our Parents Warned Us About

What's the weather like:
The Weather is Here, Wish You Were Beautiful

Favorite Time of Day:
It's Five O'Clock Somewhere

If your life was a TV show, what would it be called:
Last Mango In Paris

What is life to you:
Life is Just a Tire Swing

Your last relationship:
Bigger Than the Both of Us

Your fear:
Trying to Reason with Hurricane Season

What is the best advice you have to give:
Party At the End of the World

Thought for the day:
He Went To Paris

How I would like to die:
Breathe In, Breathe Out, Move On

My soul's present condition:
Cheeseburger in Paradise

My motto:
Come To the Moon


Actually with Jimmy it was very easy to not repeat. The harder part was choosing which particular song title to use, as several could be used on most questions.
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Saturday: Day ZERO

So the big day is finally here. I'm excited. And somewhat anxious. Not anxious about the transplant itself. But my heart rate and blood pressure have been acting weird. They expect my blood pressure to go up after the Thymoglobulin, and it has. Normally mine runs around 110/65. It's been as high as 175/94 during the last 48 hours and at last check was 150/79. But since shortly after the last dose of Thymoglobulin ended yesterday evening at 11:30ish, my heart rate has been down in the 40s, with the lowest recorded at 41. Normally my resting rate is around 60. It has pretty much stayed in the 40s since it got there.

My nurse called the doctor on call to come examine me. He ordered an EKG. The results showed all rhythms normal, but slow. I feel fine. My heart sounds fine. My colour is fine. My pulse rates match my heart rate. This is something they don't normally see, so instead of getting unattached from all these monitors, I'm still wearing the oxygen and cardio ones. And that stupid cardio one BEEPS LOUDLY every time the rate goes below 45. They say they want me to rest. Now I ask you: HOW CAN A PERSON REST WITH CONSTANT LOUD BEEPING? Do I sound fractious? I've been awake since 4:00 yesterday morning. Some 24 hours and a few minutes. Even the IV Benadryl before the Thymoglobulin didn't put me to sleep. But it did leave me with the headache I typically get after taking it. I should explain that it is not concern about the heart rate and blood pressure keeping me awake. It's that incessant beeping!

So I have to say, this hasn't been the best night I ever spent. Fortunately Mike went back to the apartment before all this nonsense started. He wouldn't have been able to sleep at all and one of us needs to be awake at transplant time!!! But I did get my nurse to promise to tell me if she thinks I should call him. Cause he would be most distraught and never leave me alone again if something happened when he wasn't here. Heck, I've got the doctor on call sleeping in the call room on our floor for me. And I'm sure not sleeping with the beeping. Not only does the beeping happen in my room. It happens at the nurses' station, too. Which is right outside my doorway - not four steps away.

And I just noticed something. In the 10 minutes or so I have spent writing this post, that beeper has been silent. Maybe I can get some sleep after all. And make a much more positive post a bit later today.

Good morning starshine!
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17 July 2009

Friday: Day -1, part II

All in all I have to say I've had a very good day. The 2nd dose of Thymoglobulin finished with no problems. Then I got platelets, and then I got unconnected for awhile. I got to go walk around in the hall - wearing my mask, of course. And I got to take a shower - a somewhat difficult task when electrodes and such are attached all over. It felt great. I've had multiple doses of oral medications. I'm thinking no wonder people aren't hungry. They are full of pills!

Because of the timing discrepancy, they wanted to start tonight's dose of Thymoglobulin sooner. So after much discussion they began it very slowly at 3:00 this afternoon. Every so often they have increased it to get the rate up to 80 and so far, so good! It will likely stay at this rate and finish about 11:30p. After that, I have to get more platelets as I did not get any boost from the ones this morning. The new ones will be HLA matched to me and my donor. Hopefully Mike will get to go home and sleep tonight.

They told me this morning that my donor's cells would be on a plane at 6:30 this evening. I've been thinking good flying weather and plane thoughts all day. The doc told me he was glad it wasn't winter because snow delays can cause bad problems for transplants. I hadn't even thought about that!

Daily food review: and borrowing a line from a friend on a foodie board, "Today's lunch is brought to you by the colour yellow." (Sesame Street fans will understand.) Now this was not the lunch that I ordered on my little menu chart yesterday.
Grilled cheese sandwich dripping (literally) with butter - perhaps prepared according to a Paula Deen recipe?
Canned peaches
Lemon Jell-O
Oatmeal raisin cookie

Until I opened up the sandwich I thought I might be able to eat lunch. Well, not the Jell-O, but the rest. Nope. But that sandwich was enough to turn anyone's stomach.

I ate the cookie and ordered more food from the other menu. What I ordered:
baked chicken with gravy
mashed potatoes
green beans
vanilla pudding
unsweetened tea

What I got: nuked 1/2 chicken breast with some kind of ultra lemony sauce pretending to be hollandaise, green beans and sweet tea. Now I even told them if there was no unsweetened don't bring me anything, I would just drink water. They were out of potatoes. No explanation on why no pudding. The green beans were edible. At this point I asked my nurse did I have to eat food from here or could Mike bring me something. He can bring me anything from restaurants as long as the kitchen has a 95+ health department rating. And anything he cooks at home. So far today the VUH kitchen is batting zero.

Dinner: this was what I ordered on yesterday's menu sheet (except the tea).
Oven fried chicken legs
Mashed potatoes
Corn
Angel food cake with peaches
Sweet tea

The only other veggie choice was white beans - nothing green at all. And remember I am eating canned stuff, too. Surprisingly the chicken had good taste. It was seasoned well and properly cooked. But the "crust" was soft from being in the warming tray on the way from the kitchen to the 11th floor. Mashed potatoes and corn were what you would expect from canned and boxed items. Angel food cake was not bad. I am told this place has unsweetened tea, but I'm beginning to doubt it. I have ordered unsweetened for every meal and have not received a glass yet that didn't have artificial sweetener in it. I didn't need to get Mike to go get carryout tonight after all. Though I might get him to go get a gallon of Milo's unsweetened tea from Harris Teeter and put in my refrigerator.

My bone marrow must be nearly totally gone. It's an odd feeling.

I've had several phone calls from relatives today. And I know I missed some calls from both family and friends when medical stuff was going on. If I missed talking with you today, please forgive me. I don't think I'm going to return any calls tonight as I am getting pretty tired.

And that's the way it is. 17 July 2009.
Goodnight and godspeed, Uncle Walter.
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Friday: Day -1

I love seeing the days count down. Only one more to go!

Woke up around 4:00 wide awake. As I'd been sleeping most of day -2 that is not such a big surprise. And I was a little hungry. No tomato sandwiches to be had, so an un-iced strawberry pop-tart had to do. Do any of you buy pop-tarts? These are not things that I purchase and I discovered it is very hard to find them around here without the icing.

For the Thymoglobulin I am premedicated with steroids. Then I get more steriods about halfway through the dose, then more at the end. I've had the middle dose, and so far am not experiencing any reaction. Normal drip rate is 83/hr. After the reaction they changed mine to start at 40/hr and after a couple of hours without problems, jump up to 60/hr. I seem to be tolerating this fine. My nurse asked me a little while ago if I wanted to try raising the rate back up to normal. I was willing to try, but Mike was highly opposed. I can understand that, so I stayed with 60/hr. For the third dose (tonight) they are wanting to try to get it started earlier so that my body can have a certain number of hours of rest before the transplant.

Besides the premedication I am connected to things at all times. Lots of things. Oxygen to breathe, cardiac monitor, respirator monitor, pulse monitor, blood pressure cuff, oxygen level monitor. Sheesh. It's enough to make a person feel sick. I am not the Borg! I am resistant. I refuse to FEEL sick.

I wish we hadn't got off on administering this drug by 12 hours. Mike wants to be with me while I get the Thymoglobulin, aka Scary Drug. It takes 10-12 hours at this lower rate and he's been here with me all night. In a chair that looks most uncomfortable and doesn't lay down. I'm trying to convince him to go back to the apartment and take a nap. He says he will once all the scary drug is finished.

They just came and did morning vitals, including weighing. I lost 5 lbs since I checked in here. Who would have thought an awful high fat diet would contribute to weight loss???

I will go ahead and post this. Then write more later.
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16 July 2009

Thursday: Day -2

All the excitement last night left me waking up with a headache this morning. For that they me Oxycodone and Tylenol. Still have the headache 3 hours later, but it is manageble. They took blood for labs around 4:00a. My platelets are low so I will need a transfusion of those today. I'm still on my first bag of Thymoglobulin. I'll be off the medication while I get the platelets. Likely won't be as late a night tonight as last evening. They have started me on Cyclosporene (anti-rejection drug).

I am not feeling hungry today at all and have to write everything down on a chart anyway. They brought me chicken and dumplings for lunch, which I think might have been good, had I felt like eating. They were flat dumplings. The kind I grew up with. I never see flat dumplings outside of home.

....time passes

I wound up sleeping most of Thursday. There were bouts of nausea and throwing up. No wonder people are not hungry. But I still don't get the "calories in any form" mantra. And "go back to eating healthy when all this is over". It would seem that healthy eating would be even more important now. And a good tomato sandwich sounds a lot tastier to me than a Pop-Tart.

Had to get more platelets on Thursday, but I totally slept through those. I'm getting steriods, Phenergan and Benadryl. 100mg IV Benadryl. That explains the sleepy and the headache.

My second dose of Thymoglobulin started around 10:00p. It's going in very slowly and no reaction. They say if you have a reaction the first time is the worst. And get this. It's a side effect. Don't you love medical terminology? It's a side effect because I have to have the drug. They are keeping me on oxygen. My breaths per minute are low for them. My blood pressure and pulse rate are also low for them. I told them that I meditate and that my rates are always on the low side, but they don't want to take any chances. And I'm glad they don't. But neither do I want them stressing out over something that is normal for me.

This morning my nurse came in and wanted to know my goal for the day. My goal for Thursday, 16 July is to send all kinds of postive good thoughts and karma for my donor to have a wonderful day. He is giving his stem cells for me today (if not enough collected he will go back tomorrow). This wonderful young man is the one who is making me 22yo again and giving me my new life. I am so grateful to him.
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15 July 2009

Wednesday: Day -3

The routine changed. I had to be at the hospital to check-in through Admissions at 7:30a. They told me to wear my mask, but that I would not have to wait there, and would be taken directly to my room at 11 North. That is not what happened. I waited about 2 hours down in admitting before a volunteer came to take me to my room. The staff on 11 North is very nice and helpful, but apparently my orders had all gotten written up wrong. I was supposed to have gotten my blood tested, gotten any necessary blood products, get tested for the Thymoglobulin and have the three hour dose of Thymoglobulin administered at 10:00 Wednesday morning.

Late getting to the room meant late getting my bloodwork done. I had to get platelets and red cells. As usual, that took several hours. Had to wait to be sure I wouldn't have a reaction to blood products.

At 10:10 Wednesday night, I am still waiting to be tested for the thymoglobulin reaction. Apparently my orders have been rewritten several times, with variations every time, which are different from what my wonderful donor goes to make his donation. Hopefully the 12+ hour adjustment we already have won't compromise anything. Once the test dose is delivered, it is administered like an allergy test. Wait an hour. If no reaction, then I get premedicated with some number of drugs including Tylenol, Benadryl, Methylprednosone (steroid) and I'm not sure what else. Give those half hour or so to kick in and then start the Thymoglobulin.

time passes....10:30p: I have gotten the test dose. Now waiting to see how I do. We are hoping to start the real thing at 11:00p. So far, so good. I am connected to all sorts of equipment to monitor me and such. Oxygen rate, cardio rate, blood pressure, oxygen mask. I think that is all right now. The monitor for oxygen on my finger makes it a bit difficult to type. They are planning for any eventuality, but I think I should just skip any reactions.

We could talk about hospital food. For lunch they brought me a pulled pork sandwich, which was actually OK. The pork was well cooked and not greasy. Diet requires that I not have anything presauced. So they gave me a little packet of bbq sauce to use on the sandwich. Dinner was a veggie burger, which was also OK. Little foil packets of mustard and mayo - no other accoutrements. These things are not part of my daily life and it seems odd to be using them. Nonetheless, I keep remembering the dietician told me I can go back to eating healthy when all this is over. Healthy in more ways than one! So the food is nothing to write home about, but as hospital food goes, it could have been a lot worse. I shall not complain about food on my first day in here. Now tomorrow, all bets are off!

Mike went back to the apartment this afternoon to get some stuff done, because he wants to be here with me tonight while I'm getting the scary medication. I'm sorry to say, his chair does not look too terribly comfy.

11:10p: Nurse is off to call the Fellow. The tiny bump of medicine she put under my skin is still there Perhaps it was supposed to disappear. No other symptoms noted.

timed passes... Thursday 8:30am. Last night during the night I had an anaphylactic reaction to the thymoglobulin. Chills, fever, turning blue, couldn't breathe. That was around 2:00a. Not the kind of fun you want to be having in the middle of the night. I was pretty much out of it and don't remember that went on, but I know they had bunch of people and a crash package. I do recall shivering like crazy and being so cold. And I kept thinking if only I could just stop shaking for just a few seconds I would be alright. It didn't quite happen that way. I know they gave me a bunch of meds, including some more steroids and 100mg IV Benadryl. The second dose of Benadryl seemed to really do trick to push me over the edge and stop the reaction.

The thymoglubulin was stopped while they stabilised me, then restarted at a very low drip rate. After some amount of time, the rate was increased a bit, but not up to the normal rate. This bag of drugs is now taking many hours to drip, instead of 6. It starts for awhile, stops for awhile. Goes a different slow rates ad gives me a break during infusion. That's OK. I can go slow. I like being able to breathe and not turning blue. Blue is not my colour. RED is my colour.
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14 July 2009

Tuesday: Day -4

Mike got up and made coffee this morning. I wasn't as dizzy from last night's Dilantin, so I had a cup and took my Nexium before we went on over to the clinic. Once we got there, Mike got me a Venti coffee from Starbucks and a blueberry scone. The medical part of the day started out pretty much the same as usual - get vitals, have blood drawn, etc. Got the Zofran (anti-nausea), Decadron (the steroid), Fludarabine (the chemo), Busulfan (the other chemo) and fluids. Also had my daily visit with Donna and Dr. Kassim.

Allish, the dietician came to see me. Guess what? I can cook with nuts. And roast nuts myself. Now that is what my common sense said anyway. Turns out Allish was reared on homeopathy, herbs and Bach flower remedies. I'm shocked she's in the traditional medical system with that background. But we had a nice conversation about such things. Then she wanted to know had I been to any energy healers. At that point I told her about my friend Patti, who graduated from Barbara Brennan's school. When Patti did an energy healing on me about 18 months or so ago she told me she was not feeling an immediate healing, but that she was feeling a lot of heat and a whole new matrix being formed. That was way before a bone marrow transplant was even being talked about, much less considered. Since then, Mike and I have both wondered if Patti was getting precognition of the transplant - my whole new matrix from which I would be healed. I am choosing to think of it that way.

My blood counts were low today. I had to take potassium and get a platelet transfusion. I did get a little nauseous and dizzy for a bit, so they gave me an IV Atavan. That knocked me right out and I wasn't dizzy or sick feeling anymore. It was 2:00ish before we left the clinic.

Tomorrow morning I have to check into the hospital at 7:30a. We went and scouted out how to get to the main entrance from the outside so I don't have to walk so far. Then we went over to Blackstone's Brewery and Grill for lunch. I ordered the Fish & Chips with brewed iced tea (can't drink sun tea) and Mike got Ribs with Fries. We both shared. The fish batter was made with their pale ale and the ribs sauce was made with a porter. Both were very good. I particularly liked that the fish were not at all greasy. Cole slaw came with both meals, but that is not something I can eat out now.

Back to the apartment to sleep while Mike went to the grocery. I'm supposed to keep hard candy and sunscreen on hand at all times. Have to put on the sunscreen when I go outside and use the hard candy to help keep my mouth from getting dry.

We are getting ready to go out to dinner at Rhumba. Still the same caveats about being safe and what not to eat. And I'm happy to see we are going to get both the restaurants in before I check in tomorrow. I've had my Levaquin already and will get tonight's Dilantin when I get ready for bed. Tomorrow I'll take Nexium before leaving the apartment, then all drugs will be up to the hospital.
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13 July 2009

The Men's Room - Art Deco in The Hermitage






The Men's Room>
By popular request, men and women alike in the Nashville area have asked that we preserve this Men’s Room and restore it back to its original Art Deco lustre. Remodelled and reconfigured in the 1930s, this room has been the site of several music videos and numerous legislative deals. The colour scheme has encouraged as many women as men to look inside.


See, it was OK for me to go in!!! On Sunday Kiki and Mark came up to bring my Reiki Voodoo doll and have lunch with Sally and me. Well, I don't know if they originally intended to eat lunch with us, but that's how it worked out. And it was really nice. I'll post about the meal with the other food posts I have planned. Kiki and Mark like to stay at The Hermitage when they come to Nashville. It is a old luxury hotel that still knows the meaning of service. (Kiki is particularly fond of the bath concierge.)

Knowing how much I love Art Deco, after we ate, they said I needed to go to see The Hermitage so I could see the Men's Room. OMG, what a fabulous space! The ambiance envelops you the minute you walk in. It has black and green glass walls, complete with all washroom accoutrements, including shoe shine stands.


There is a row of green pedestal lavatories on the right when you walk in:


The shoeshine stands are in front of you to the left. To the far left are the toilet stalls, complete with green and black toilets.


And a close-up of one stall:


Urinals are opposite the shoe shine stands - also green:


I have never seen urinals like that before, but I must admit I have never spent as much time in a men's room before either! This is such a beautiful room and it's still a working bathroom, though fit to be a museum exhibit. And it is kept spotless. Women go in as long as it is not in use. I love those walls and am trying to think of some way to incorporate coloured glass walls into the powder room of the new house. Will use my own handpainted art deco style pedestal sink, but I think this type wall would be a real showstopper!
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Monday: Day -5

This morning I woke up feeling really light headed and sort of slow moving from last night's Dilantin. Sally and I did not make coffee here, so I just took my Nexium and we went on over to the clinic. Thank goodness for the Starbuck's there. The medical part of the day started out pretty much the same as usual - get vitals, have blood drawn, etc. Got the Zofran (anti-nausea), Decadron (the steroid) and Fludarabine (the chemo), today added Busulfan and fluids. Also had my daily visit with Donna and Dr. Kassim. My blood counts were good enough that I did not have to have any transfusions today.

My friend, Sheri, had called yesterday on her way home to Mississippi from the HLCCA Conference in Pittsburgh. She was bringing me some conference goodies and made her route home work to come through Nashville. Then she called this morning to let us know where she was and about when she would be here. I was already in treatment, so Sally went to meet her and get the boxes. Sheri is just the sweetest person! And I was THRILLED with my conference goodies. I so appreciate that she took the time to come through here. Friends are indeed special. Tomorrow I want to open my boxes and make some photos.

Busulfan takes three hours to infuse so I did not get finished today until around 1:00p. Just before I was getting ready to leave, Mike called to let us know he was here and coming to the clinic. (Needed a key to get in the apartment.) So he met us, got the key and came back to the apartment to work. Sally and I (with instructions from Donna that I could not drive and if we went in a convertible the top had to be up - Sacriledge I tell you) went back to the Jaguar/Porsche dealership. We took the Jag S Series for a test drive. It's a very nice car. Sally is thinking about it. It takes a long time because the salesmen all have to do their spiel. And then the manager has to come do his spiel. By the time the Jag time was over, I didn't really feel up to going out in the Porsche. And I couldn't drive anyway. So we went off to an antique mall instead.

Yesterday I mentioned that the midcentury shop was gone from 8th Avenue. That was incorrect. It is not gone, but it is very different. The store was divided into three sections. Once has now become vintage clothes, one is mostly empty with some newly re-made midcentury icon lamps and clocks, and the main section does have some stuff. Seemed pretty empty, though. I got some vintage recipe books that had Harlequin and Fiesta in the photos. Also a vintage menu of a Turner-like flamingo print, a tablecloth and a couple of tea towels. There was an antique mall across the street. All it yielded were some huckweaving tea towels and art deco perfume bottles.

By the time we got back home it was after 4:00. Once again I was really tired and somewhat dizzy, so after Sally left, I went to bed. Mike woke me up around 8:00, but I couldn't get myself in gear to go to dinner. Instead he fixed me some scrambled eggs and toast. Took my Levaquin before supper and another dose of Dilantin about an hour ago. I'm feeling a bit dizzy again, so I think I will go back to bed.
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Update on Sunday: Day -6

After not sleeping well Saturday night, I came home and crashed after being in the clinic yesterday. Sunday was the day I had to have a loading dose of Dilantin (900mg) before starting Busulfan today. Dilantin is an anti-seizure drug. The loading dose is huge, so side effects are common. Most people get very dizzy and are known to fall. It had to be taken in 3 doses, 3 hours apart, starting at 4:00 yesterday evening.

I was 15 minutes late getting started, but that was not a problem. Sally had to really wake me up to get me to take the first dose. Then I went right back to sleep. When I woke up for the second dose at 7:00 I managed to stay awake. Last dose was at 10:00p. I have been dizzy from this drug. The top of my head feels swishy. If you are familiar with the motion of the old waterbeds from the 1970s, that is the best way I know to describe it.

Because of my dizziness and the storms in Nashville last night we did not go out to eat. I really want to try Rhumba, so maybe Mike and I can go tonight. Blackstone’s Brewery and Grill is also on our list. Two more nights till I check into the hospital and two more restaurants at the top of our list. Hoping those will work out. But, in the spirit of giving a dinner report, I had cottage cheese (4% milk fat – boy did I feel decadent) crackers, iced tea and a Twinkie for dessert. My mind is having an odd time wrapping around this diet!

Mike is on his way up here to Nashville after making it safely back home last night. Sally is going to hang around so she and I can go test drive the Jag this afternoon. Donna says I can't drive taking the Dilantin, but I can ride. And if I go in a convertible I have to go TOP UP!!! Sacrilege, I tell you. Sacrilege.

Slept a little better last night and will give today's report later.
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Monday meme

Here's what you're supposed to do. Copy this entire note and paste into a new one that you can post. Change all the answers so that they apply to you. Then send this to lots of people you know, including the person that sent it to you. Some of you may get this several times...that means you have lots of friends. Be sure to send this back to me too! I want to see your answers!

I'm posting this instead of sending a lot of separate e-mails. Feel free to do the same.


1. What is your occupation? wife, mom

2. What color are your socks right now? I'm not wearing any, but my Crocs are pink!

3. What are you listening to right now? the sounds of silence

4. What was the last thing that you ate? nighttime pills

5. Can you drive a stick shift? absolutely

6. If you were a crayon, what color would you be? red

7. Last person you spoke to on the phone? Mike

8. Do you like the person who sent this to you? Yes

9. How old are you today? 54

10. Favorite drink? unsweetened iced tea

11. What is your favorite sport to watch? figure skating

12. Have you ever colored your hair? oh yes. Used to get it highlighted all the time in college. Then just recently got it highlighted in Coca Cola Red.

13. What is your full name? I'd rather not say

14. Favorite food? fresh garden tomatoes

15. Last movie you watched? part of one of the Pirates movies

16. Favorite Day of the year? no idea

17. What do you do to vent anger? meditate

18. What was your favorite toy as a child? either Kenner Easy Bake Oven or my original Barbie doll from 1959

19. What is your favorite season? Summer

20. Hugs or kisses? yes

21. Cherry or Blueberry? cherry

22. Do you want your friends to post back? up to them

23. Who is most likely to respond? no idea

24. Who is least likely to respond? another no idea

26. When was the last time you cried? this afternoon talking with my niece

27. What is on the floor of your closet? suitcase, camera bag, box

28. Who is the friend you have had the longest that you are sending this to? I'd guess Mary Beth

29. Who is the friend you have known the shortest that you are sending this to? not sure

30. Favorite smells? fresh herbs - basil in particular, fresh baking bread, daffodils, hyancinths, magnolias, roses

31. Inspires You? beauty

32. What are you afraid of? Not a lot. Physical pain, I guess.

33. Plain, cheese or spicy hamburgers? I don't eat burgers made of beef, so it depends on what kind I am having.

34. Favorite car I like? Porsche convertible. I hope to test drive one or two this afternoon.

35. Favorite cat breed? Siamese

36. Number of keys on your key ring? I keep two keyrings. The one I always carry with me has my car key and my flipper to open the car. The other ring has more than I can remember and I'm not getting out of bed to find it and count them right now.

37. How many years at your current job? wife - 31 years, Mom - 22 years (almost)

38. Favorite day of the week? Wednesday

39. How many states have you lived in? 4

40. Favorite dog breed? I think I would like an Italian greyhound.

41. Favorite nickname? If I ever become a grandmother, I would like to be called Mimi.
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12 July 2009

Peach Sticky Buns



The Best Breakfast Rolls

Originally this recipe came from my dear friend and neighbour, Barb. She called them Sticky Buns and used frozen bread dough. Both of our spouses went to work early and we were home with the babies. Often times one of us would make some variation and then call the other to come over for coffee and breakfast. I most often use my grandmother's recipe for Ice Box Rolls to make the Breakfast Rolls, but decided to try a different dough today.

As I couldn't sleep last night I went to the kitchen so as not to disturb Sally. Abbey had brought me my breadmaker and a question on one of the foodie boards had reminded me of a recipe I first learned as Moomie's Buns. Ellen Dill (now Ellen Dorsey) posted the roll recipe years ago on the King Arthur Flour Baking Circle. She has changed the recipe to call it Ellen's Famous Burger Buns . With this dough you can make all kinds of wonderful buns and rolls. I typically use it for hamburger style buns, but decided to try the dough this morning for sticky buns. And I chose to make Peach Sticky Buns because my Mom had made some homemade Peach Jam with peaches that Steve, my BIL, brought back from Louisiana last week.

Dough turned out of breadmaker onto counter:


Rolled and spread with my Mom's homemade peach jam.


Rolled up as for jelly roll.

Baked


Turned out on pizza tray because I didn't think to bring a serving dish.


And served on Harlequin reissue plates, with coffee in Fiesta mugs.


To make the Peach Sticky Buns, use variation #2.
Sticky Buns, aka The Best Breakfast Rolls

1 recipe Ellen's Famous Buns dough
¼ cup butter
½ cup packed light brown sugar
2 Tbsp light corn syrup
¾ cup chopped pecans
3 Tbsp butter
¼ cup sugar
2 tsp cinnamon

Make dough ahead of time in breadmaker. Preheat oven to 375ºF. In a 9" cake pan combine butter, brown sugar, and corn syrup. Place in oven to melt. Meanwhile, roll dough out to 12x18 rectangle and brush with 2 Tbsp. butter. Combine sugar and cinnamon. Sprinkle over dough. Roll tightly like a jelly roll, beginning at 12" edge. Cut into 12 slices.

Turn off oven and stir mixture in cake pan. Sprinkle on the nuts. Lay rolls, cut side down in pan and brush tops with remaining butter. Cover and let rise till doubled. Bake at 375ºF for 25 minutes or until browned. Invert onto large platter and cool. Don't let the rolls stay in the pan to cool or the brown sugar mixture will glue them to the pan.

Variation:
1. Change brown sugar to white. Substitute grated coconut for pecans and replace cinnamon sugar mixture with orange marmalade.
2. For peach buns, spread the rolled rectangle of dough with an 8oz jar of peach jam or preserves. Replace pecans with slivered almonds.

Ellen's Famous Buns

1 cup water
2 Tbsp butter or oil
1 egg
1/4 cup sugar
1 tsp salt
3 1/4 cups flour
1 Tbsp instant yeast

Place all ingredients in the bucket of your bread machine in the order given. Select dough cycle. Press start. Allow machine to complete it's cycle. In my bread machine this takes 1 hour 40 minutes.

Turn dough onto a lightly floured surface.
To make hamburger or hot dog buns: Divide into 8 pieces. Take each piece, and slap it, hard! Flatten into hamburger or hot dog bun shapes. The dough can also be divided into 16 pieces to make sliders. Place on greased cookie sheets. Cover, let rise 40 to 45 minutes.

Preheat oven to 375º. Bake buns for 12 to 15 minutes til golden. Remove to wire racks to cool. They are fabulous for any favorite sandwich filling!

Alternatively, use the dough to make sticky buns and prepare as directed.


Also see Sticky Cinnamon Buns and Cinnamon Roll Lamb.
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Sunday: Day -6

Couldn't sleep last night. Probably due to the two cups of coffee I had with dessert at Tayst last night. Sooo, what's a girl to do? Abbey had brought me my bread maker, so I put in a batch of dough to make, then made Peach Almond Sticky Rolls for breakfast this morning. My Mom had made Peach Jam last week from the peaches Steve (Mike's brother and Sally's spouse) had brought back from Louisiana the weekend before. Mom sent me a couple of jars of it, so I used one for the filling in the rolls. I used slivered almonds for the nuts in the sticky part. Boy were they tasty!

Something has happened to my Palm PDA. This is a real problem as our entire family lives our lives from what's on my Palm. It seemed to be with the handheld as it wouldn't HotSync on either computer. Sally is going to see if she can do a hard reset on it today whilst I'm getting my treatment and hopefully that will fix it.

The medical part of the day started out pretty much the same as usual, with the exception of starting to take Nexium when I got up this morning. Then over to the to OTU clinic, get vitals, have blood drawn, etc. Got the Zofran (anti-nausea), Decadron (the steroid) and Fludarabine (the chemo) and fluids. Also had my daily visit with CRNP (Kelly, as Donna was off today) and Dr. Kassim. My platelets were below 10, (have I mentioned Vanderbilt doesn't tell you how low when you are below 10? Just that you are below), so I had to get a unit of those. My Tuesday bag was 637 ccs, the largest bag I've ever seen. Today's bag was only 197 ccs. It goes in a lot quicker. I like that they pump platelets here. At home they just drip and it takes a long time. Also got to do without IV Benadryl. Tonight I will need to continue to take Levaquin (antibiotic). With the weekend labs and getting the platelets we were 12:30ish getting away from clinic.

I asked about continuing to go out to eat and have been told that is fine as long as I feel like it. I just have to follow the guidelines. This can continue until I go in the hospital Wednesday morning. When I get out of the hospital I will have had the transplant and must stay protected until engraftment happens. That should take 2 to 3 weeks. Once I'm engrafted and my blood counts start coming up so that I am not neutropenic, we can talk about going out to eat again. I'm of the opinion we should take advantage of all possiblities ahead of time. LOL.

Kiki and her husband, Mark, came up to bring us my Reiki Voodoo doll. We went out to lunch and had a lovely time. The place we went is a bbq place downtown called Ribby's. We ate out on the second floor patio and watched all the tourists down below. We got two orders of the Hog Platter and sides of baked beans for all. This would have been the dieticion's idea of heaven. Can we all say, "ANIMAL PROTEIN"? There were ribs, sausage, chicken wings, pork tenderloin, pickles, peppers and blocks of cheddar cheese. I am sure Mike will like this place. Then we went and played tourist at The Hermatige. And I got loads of pics of the Men's Restroom. I promise to post pics and an explanation later.

There are severe thunderstorms going on around here now. Penny sized hail and winds up to 60mph. If the weather permits we are heading out to Rhumba for dinner tonight. "Tropical flair combines with top notch Latin, Asian and Caribbean cuisine where globe trotting tastes have found a home." Rhumba is another locally owned restaurant in the West End and we are looking forward to dining there. Hopefully we can go a bit earlier tonight. A new episode of The Next Food Network Star is on at 9:00. For some reason I've been watching again this year and I hate to miss one. And I'm told that rush hour ends earlier on Sunday night. And I'm telling you. Sally is forgetting how to be a grandmother hanging out with me. Going out to fine dining every night and eating continental hours is something she hasn't been used to lately. But she is a great sport and willing to try out all kinds of new things with me. We really are having fun. It's nice for us to have some time like this. At home we seem to stay busy with so many other things instead of having sister time. If the weather is bad, we will just make something exciting at home instead.

Now I am off to work on photos.
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