Friday ~ 30 April: Day 287

Lots of stuff happened at Vanderbilt this week.

1. I have started on ExJade and the doc is hopeful that it will only take 3 or 4 months to get my iron back down to more manageable levels. He says we will not try to get it back in normal range (50-150), but that we will go for around 500. Currently it seems to range between 4000-7000, depending on which lab does the testing.
2. We have started reducing my GenGraf - the anti-rejection drug I am taking. He wants me to start tapering it off in units of 25mg every two weeks. I will continue to have my blood checked every two weeks and we will see how all the tests look. As long as everything is good, I will keep tapering off this med and should be off of it by the first of September. Keeping my fingers crossed.
3. My eyes look good. No GvHD showing up in them. However, the eye doctor wants to keep me on the Restasis drops. On 25 May and 2 June I will have the cataract surgeries (left eye first, then right). My lenses will be being replaced with Restor lenses. In 80% of the people who get these, they never have to wear contacts or glasses again. The 20% that do will usually need some kind of reading glasses for close work. I am going to go for the 80%. :-) And I hope to be able to see to thread a needle again. Ever since I switched to monovision contacts that has been a problem. So I stay on the Restasis until a month after the last eye surgery, just as a preventative.
4. My regular blood counts (reds, whites, platelets, neutrophils) all remain good.
5. My kymerisms (sp?) also look good. One of them is at 100% and the other is at 95%. This is the percentage of my bone marrow that came from my donor. The one that is 95% is expected to be there until I am completely off of the anti-rejection meds. So everything is looking great!
6. My liver functions are better. Not yet normal, but the levels are down. Hooray! The doc says I can drink half a glass of wine a week now. He told me he has to say half a glass because patients always double what he tells them. LOL. Cheers!


This is the best report I have gotten in quite a while, so I am really thrilled. Now to work on getting rid of all this iron so I can get my strength back! Thanks to all of you for your continuing healing thoughts, prayers and support.

namasté,

Mara des Bois Strawberries ~ Kitchen Garden 2010

photo courtesy White Flower Farms

I have an addition to this year's kitchen garden in containers: Mara des Bois strawberries. The strawberries are new to me this year and came from White Flower Farms. According to their website, "a French nursery introduced ‘Mara des Bois’ in 1991. This distant relative of the woodland strawberry produces aromatic fruits about the size of acorns with a rich, sweet flavor and tender flesh. In full sun, hybrid 'Mara' bears heavily throughout the season and throws vigorous runners that make it especially productive for home gardens and containers." These sounded just perfect for me.

Close-up of the berries

photo courtesy White Flower Farms

The strawberry pots and the plants arrived late last week. Here's a shot of the strawberries just planted.



We love strawberries around here, so I got two of the pots. They will certainly get full sun, so I am looking forward to a bounty of these jewels from my kitchen garden. I'm also looking forward to the runners producing more plants that can be put in the ground at the farm next year.

namasté,

Mid-week Meme ~ Bucket List

BUCKET LIST - mainly geared for people living in the USA

You know the drill. Copy and paste in facebook, blog, e-mail, etc. Place an X by all the things you've done and remove the X from the ones you haven't. This is for your entire life!

(X) Gone on a blind date
( ) Watched someone die
(X) Been to Canada
(X) Been to Mexico
(X) Been to Florida
( ) Been to Hawaii
(X) Been to Europe
(X) Been to South America
(X) Been to Central America
( ) Been to Asia
( ) Been to Australia
( ) Been to Africa
(X) Been on a plane
(X) Been in a helicopter
(X) Been on a cruise
( ) Visited all 50 States
(X) Been lost in a neighborhood you knew, a fairground or store?
(X) Been on the opposite side of the country
(X) Gone to Washington D.C.
(X) Swam in the ocean
(X) Ridden a camel
(X) Cried yourself to sleep
(X) Played cops and robbers
(X) Recently coloured with crayons
( ) Sang Karaoke
( ) Paid for a meal with coins only
(X) Done something you told yourself you wouldn't
(X) Made a prank phone call
( ) Laughed until some kind of beverage came out of your nose.
(X) Caught a snowflake on your tongue
(X) Danced in the rain
(X) Baked bread
(X) Written a letter to Santa Claus
( ) Been arrested
(X) Been kissed under the mistletoe
(X) Watched the sunrise with someone
(X) Blown bubbles
(X) Gone ice-skating
(X) Been skinny dipping outdoors
(X) Gone to the movies
(X) Skipped school
(X) Been to the top of the St. Louis Arch
(X) Been down Bourbon Street in New Orleans
( ) Been deep sea fishing
(X) Driven across the United States 3 times
( ) Been in a hot air balloon
( ) Been sky diving
( ) Gone snowmobiling
( ) Lived in more than one country
(X) Ridden a ferris wheel
(X) Lay down outside at night and admired the stars while listening to the crickets
(X) Seen a falling star and made a wish
(X) Enjoyed the beauty of Old Faithful Geyser
(X) Seen the Statue of Liberty
(X) Gone to the top of Seattle Space Needle
( ) Been to a bullfight
(X) Travelled by train
(X) Travelled by motorcycle
(X) Been horse back riding
( ) Ridden on a San Francisco Cable Car
(X) Been to Disneyland
(X) and Disney World
(X) Believe in the power of positive thinking
(X) Hiked on the Appalachian Trail
(X) Been in a rain forest
(X) Seen whales in the ocean
(X) Been to Niagara
(X) Ridden on an elephant
(X) Swam with dolphins
( ) Been to the Olympics
(X) Saw and heard a glacier calve
( ) Been spinnaker flying
(X) Crossed the Continental Divide
(X) Been water-skiing
( ) Been snow-skiing
(X) Spent the night sleeping outside in a hammock
(X) Been to Westminster Abbey
(X) Been to the Louvre
(X) Swam in the Mediterranean or Adriatic Sea
(X) Been to a Major League Baseball game
(X) Been to a National Football League game
( ) Enjoyed eating liver
(X) Worn a wig
(X) Seen fireflies, aka lightning bugs
(X) Eaten escargot
(X) Participated in a boycott
( ) Climbed a mountain (real mountain climbing)



namasté,

Ruby Tuesday: 4-27-10

MaryT/TheTeach over at Work of the Poet started a photo meme for people who have photographed something red. I love red. I have lots of photos with red.


My elder daughter, Abbey, dressed up as Dorothy this past Halloween. And of course, she wore some fabulous ruby slippers!


namasté,

Mellow Yellow Monday #66

I take part in MYM because it is a challenge for me. I don't normally have many photos with yellow in them. But not this week. Yea! I just happened to make a photo full of yellow recently.



This is a Japanese Kerria, aka Yellow Rose of Texas, that was blooming at the farm this past week. The whole bush is just covered in flowers and will keep blooming throughout the season.

This lovely photo meme was started by Drowsey Monkey at Mellow Yellow Monday.


namasté,

Sunday visitor

I love backyard birdwatching. The farm is a Backyard Wildlife Habitat and I have put in numerous plants to supplement what is naturally there for the birds and butterflies. I also have many bird feeders there and in town that we keep filled year-round.

Here in town I've also got several bird baths around at different levels and of different sizes. One of them hangs off the edge of the balcony outside our bedroom. Some of the backyard birds that I see there are bluejays, tufted titmice, wrens, goldfinches, cardinals, hairy woodpeckers, downy woodpeckers, yellow hammer woodpeckers (state bird of Alabama) and a couple of times even a pileated woodpecker. Since all the leaves have come in there is not much sun on the balcony in the afternoon. But for a few minutes today a ray of sunshine and a male cardinal shared the same space.

These pics are made through the window, so they are not as sharp as I would have liked.





namasté,

Saturday's Salad Plate Supper

Saturday was a bad weather day with lots of storms and rain all day. No point even trying to stick my head out the door, so I decided to do some cooking. Luckily the power only flickered a few times, so nothing got delayed.

First, I made a giant batch of Marcella's Amazing Tomato Sauce. There were huge cans (106 oz) of San Marzano tomatoes at Costco Friday, so I decided to try those out for the sauce. They worked very well. Most of that got packaged to put in the freezer for future use. It will be nice to have some to pull out when we need a quick dinner. I made the sauce in my Staub 6 qt Coq au Vin pot and it was just the right size.



After I got the sauce simmering I had to go rest for a bit. Next up was Broccoli Almond Salad. I like to make that one several hours ahead of serving time for the flavours to meld. More rest time before finally starting Pasta, Pesto and Peas.

After I cooked the first pot of pasta, DD#2 had a late lunch of a bowl of some of the pasta with Marcella's sauce. I was getting pretty tired, so after she ate, she took over making the pasta salad. And she did a great job, too! It was her first time to use the potato ricer (draining the spinach) and now she is anxious to actually rice potatoes.

For our supper we had a mixed salad plate: chicken salad, Broccoli Almond Salad, and Pasta, Pesto and Peas - all served on persimmon Fiesta plates. DD#2, being vegetarian, left off the chicken salad.



We may have the same thing for dinner tonight.

namasté,

Pasta, Pesto and Peas

Well, I was surprised to note that I have not blogged about this dish before. The Barefoot Bloggers made it back in June of 2008. It's a TNT recipe from Ina Garten and a favourite pasta salad at our house.

As is my wont with most recipes, I have changed it up just a bit. Mainly I cut back on the mayo and the total amount of olive oil, but add more Parmesan and pignoli. Also, I make my pesto with all pignoli and no walnuts. I freeze a lot of pesto every summer, but if I am out and want to make this in a hurry, I find that that Costco's Kirkland brand of refrigerated pesto works very well. And as I always have a choice of several different pastas in the pantry. I just choose from what's there. Yesterday I used some mini farfalle and bag of pasta DD#2 got for Christmas that had shapes of gingerbread men, gingerbread houses, and evergreen trees.

This recipe makes a LOT of salad, so I'll have enough to share with my Mom & sister, as well as having some for lunch this week. It's mixed up in the largest Fiesta baking bowl.

Some of our ingredients - I really like using the smaller sized pastas for this salad.


Pastas cooked and mixed together


The best way to squeeze spinach dry is with a potato ricer. A friend of mine from an internet message board actually had this tip published in Fine Cooking.


Spinach, pesto and lemon juice processed


Pesto mixed into pasta


Parmesan. peas and pignoli added


All mixed in a scarlet Fiesta mixing bowl and ready to serve

Pasta, Pesto and Peas adapted from Ina Garten's recipe in Barefoot Contessa Parties * 3/4 pound fusilli pasta * 3/4 pound bow tie pasta * up to 1/4 cup good olive oil * 1 1/2 cups pesto (packaged or see recipe below) * 1 (10 oz) package frozen chopped spinach, defrosted and squeezed dry * 3 Tbsp freshly squeezed lemon juice * 1/2 cup good mayonnaise (I use Hellman's light.) * 3/4 cup freshly grated Parmesan cheese * 1 (12 oz) package frozen English peas, defrosted * 1 cup pignoli (pine nuts) * kosher salt and freshly ground black pepper, to taste Cook the fusilli and bow ties separately in a large pot of boiling salted water until each pasta is al dente. Drain and toss into a bowl with the olive oil. Cool to room temperature. In the bowl of a food processor fitted with a steel blade, purée the pesto, spinach, and lemon juice. Add the mayonnaise and pulse again to mix. Add the pesto mixture to the cooled pasta and then add the Parmesan, peas, and pignoli. Mix well, then taste and adjust seasonings. Serve at room temperature. Note: The exact amount of peas is not critical. Bag sizes vary. I've used as little as 8 oz and as much as 16 oz. Pesto: * 1/2 cup pignoli (pine nuts) * 3 Tbsp chopped garlic (9 cloves) * 5 cups fresh basil leaves, packed * 1 tsp kosher salt * 1 tsp freshly ground black pepper * 1 1/4 cups good olive oil * 1 cup freshly grated Parmesan Place the pignoli, and garlic in the bowl of a food processor fitted with a steel blade. Process for 15 seconds. Add the basil leaves, salt, and pepper. With the processor running, slowly pour the olive oil into the bowl through the feed tube and process until the pesto is thoroughly pureed. Add the Parmesan and puree for a minute. Use right away or store the pesto in the refrigerator or freezer with a thin film of olive oil on top. Notes: Air is the enemy of pesto. For freezing, pack it in containers with a film of oil or plastic wrap directly on top with the air pressed out. To clean basil, remove the leaves, swirl them in a bowl of water, and then spin them very dry in a salad spinner. Store them in a closed plastic bag with a slightly damp paper towel. As long as the leaves are dry they will stay green for several days. Yield: 4 cups

Click here to see what other Barefoot Bloggers think of this recipe.

namasté,

Broccoli Almond Salad

We got some really nice broccoli in this week's veggie box. Rather than cooking it, I opted for this variation of a salad that has been around for years. Abbey and I got some lovely red seedless grapes at Costco Friday in anticipation of making this salad. When I originally got the recipe from a dear friend, it also had red onion and bacon, and used sunflower seeds instead of almonds. I started leaving out the bacon years ago, but just yesterday made these other changes. (Mainly because I didn't think to pick up any red onions and have somehow managed to collect several packages of almonds that need to be used.) DD#2 loves broccoli. Actually she really likes grapes and almonds, too, and she gave the salad a two thumbs up. I use 3 Tbsp vinegar in making the dressing, but if you like a less tart dressing, certainly reduce it down to 2 Tbsp.

Gather up some ingredients


Dressing in a lemongrass Fiesta bowl and the salad in a sunflower Fiesta bowl


Plated to serve in a lilac Fiesta bowl

Broccoli Almond Salad Salad: 1 large head broccoli 2 cups seedless red grapes* 1½ cups slivered almonds Dressing: 1 cup mayonnaise (I use Hellman's Light.) ½ cup sugar 2 – 3 Tbsp white wine vinegar Cut broccoli into bite-sized pieces and place in bowl. Cut grapes crosswise and add to broccoli. Add the almonds. Whisk together the dressing ingredients and pour over salad. Toss together to mix well and refrigerate until serving time. * We like a lot of grapes in our salad, so I normally use more than 2 cups.

namasté,

Friday ~ 23 April: Day 280

I haven't posted a medical update in quite a while, so let me catch you all up on where things stand. First and foremost, I continue to improve. During March I was still having to spend most of my time in bed. My shoulders remained in intense pain and I was on oxycodone every 4-6 hours round the clock for that. Liver functions remained high, but my red counts, white counts and platelets continued to maintain and improve.

In late March Mike and I went to The Monroe Institute for their Professional Division meeting. It was my first time to go anywhere since we got home from Nashville in October and I was really using the trip as a goal to meet in getting better. TMI is located in the Blue Ridge Mountains of Virginia and I always consider it a retreat when we go there. I have used several of their Hemi-Sync CDs during my whole illness and transplant process. Those have been extremely helpful to me in meditation, sleeping and healing. I am actually not sure how well I could have coped with a lot of the stresses of the MDS and transplant without them.

This trip was one of the most productive for me healthwise. While there I had two deep tissue massages from a masseuse who also does energy work. A friend of mine, Patty Ray Avalon is one of the residential trainers at TMI, as well as an artist and energy healer. She was formerly on the faculty of the Barbara Brennan School of Healing. One evening Mike and I went over to her home and she did an energy healing session for me. That was one of the most amazing healing sessions I've ever experienced. I also met Theresa Bullard. We've known her Mom, Barbara, for some time, but this was our first time to see Theresa. She is a doctor of physics who also does energy DNA alignment. It seemed fortuitous that we should run into each other, so I also did a DNA alignment session with her before we came home.

The results of all this were amazing! I stopped needing any oxycodone after my session with Patty and have not needed it in the month since. After being on this narcotic for some 18 months, this is wonderful. Also, since I've been home I have been able to get up and get dressed almost every day. I've been able to start cooking some again, as evidenced by the flurry of blog posts this month. I have to take it slow and easy, doing some things, resting and then doing some more things. But it's so much fun to be able to be in the kitchen again.

Now not every day is wonderful. I'm still having a lot of joint pain, particularly where my legs join my hips. That makes it difficult to stand and walk. The only way to sit comfortably for more than a few minutes is on the bed or sofa with my legs stretched out in front of me. I am also staying very tired. If I go to the grocery store (and I've only been a couple of times) I must park in the handicapped spots and ride around in the motorised carts. Both of these things are symptoms of excess iron. Because I had over 100 red blood transfusions, I took in a lot of iron that has nowhere to go, so it stays in my body. This is not a good thing. Excess iron damages organs and joints. Two of the top symptoms of excess iron are joint pain and chronic fatigue.

The doc in Nashville has been having me get blood tests every two weeks and we've been adjusting my medications since November to see what kind of reactions I experience. It's all a juggling act and quite complicated. We have to be sure the Graft vs Host Disease of my liver is under control before I can start on Exjade - the drug that will bind to the iron and get it to pass from my body. Also, before I can start the Exjade, I had to have a baseline audio test, because extended use has been known to damage hearing. (Pretty good news there! Loud rock concerts of my youth and driving a convertible for years only resulted in a small loss of higher treble tones in one ear. Otherwise I did well.) I also have to be cleared by the eye doctor. When I last saw her, she saw no more evidence of Graft vs Host Disease of my eyes, but wanted me to continue the Restasis drops for the full six months and see her again. I have developed cataracts from all this and will need to have lens replacement surgery for that in the somewhat near future. That will be after the first year post-transplant, but we don't know exactly when yet.

So where I stand today: My liver functions are remaining high, but stable. This is likely due to both the GvHD and the elevated iron levels. I go back to my transplant doctor on Wednesday of next week. He says he will give me the prescription for Exjade then. I will remain on Gengraf, an antirejection drug, with no change in dose. I will also remain on the anti-viral and anti-biotic drugs. All this means my immune system remains compromised, so I must continue with all the precautions that go along with that, including wearing my mask when around groups of people, avoiding anyone who is ill, etc. I will have a Pentamadine treatment (the breathing tent with the medication to help prevent PCP pneumonia). On Thursday I see the eye doctor, for hopefully my final visit regarding Graft vs Host Disease of the eyes. If all is well I will stop the Restasis drops.

I again want to take this opportunity to thank all of you for your healing thoughts, prayers and good wishes. They continue to mean more to me than I can ever express. I know that these are the things that have truly helped so much with my healing.

I also want to thank each and every person who donates blood or volunteers to be a bone marrow donor. You may not realise it, but you save people's lives every single day. Yesterday DD#2 was so proud to be a blood donor for the first time. They had a blood drive at her school and the Red Cross will now let 16 year olds donate with parental permission. She wanted to do this all on her own with no input from us. Another reason I am proud of her.


namasté,


P.S. In my blood tests last week my red count, white count and platelets were they highest they have ever been, according to the records we have. Better even than when I was in my 20s with no idea of what was to come. It really is a miracle.

Earth Day 2010

Today is the 40th Anniversary of Earth Day.



Last year I made a list of things we do at our house to decrease our environmental footprint. See Earth Day 2009. I've been thinking of anything I have added to that list this last year.

1. One thing I thought of is that I have driven a lot less. That was because of medical reasons, but none-the-less, I have only had my car filled up with gas about 6 times since we purchased it last October. Because I've not been driving other people have had to do the grocery shopping. That is combined with other errands so that no one is making a special trip. Also, my new car is more fuel efficient than the
2. A second thing I did was to give Abbey a set of reusable bags to take to the grocery store. Since she has her own household now, she needed those.
3. I've also been more careful about shopping and using up produce before it goes bad. I was really bad about not using up fresh parsley in a timely manner. So what I've been doing is after a day or two, processing it with a little good olive oil and freezing it - either in ice cube trays or 1 Tbsp blobs on a Silpat lined baking sheet. When the portions are frozen, I store them in a Ziploc bag until needed. It's an easy way to add a boost of fresh herbs to something when you don't actually have them on hand fresh.
4. I will have fresh herbs in pots at the house in town again this year. That will negate needing to purchase herbs that have been trucked in to the market.
5. This year I am also growing strawberries in strawberry pots. The strawberries send out runners, so purchasing new plants is not necessary. Also, the flavour is much better than in strawberries that are grown for shipping.

So what have you done new this last year to help our Mother Earth? Every little thing counts.

Remember, we can

Happy Earth Day

namasté,

Dirty Rice

Sometimes you grow up eating foods and have no idea that not everyone eats these things. You only find it out as you get older and out into the world. It's true for many food traditions, including those of us whose "home cooking" includes Creole/Cajun cuisine. Dirty Rice is a dish that falls into this category.

Traditionally Dirty Rice is a Cajun one-dish meal made from white rice cooked with the trinity (onion, celery & bell pepper) and chopped chicken liver and giblets, which give the rice its typical "dirty" colour. It has a distinctive flavour. Often the rice was leftover from an earlier meal. And no one thought anything about describing a food as "dirty". In our more politically (and otherwise) correct times, Popeyes Fried Chicken has taken the name Dirty Rice off their menu and replaced it with Cajun Rice. In my mind though, this will always be Dirty Rice.

I grew up having Dirty Rice, but it was not one of the things I really enjoyed. Why? Because I am not fond of offal. not at all. Some people add ground beef to their Dirty Rice. I do not do that either. Other people add sausage. Now that I can do. Dirty Rice with no chicken innards, but sausage makes a tasty dish. And it's easy!

My sister called and was coming by for a few. Her rheumatoid arthritis is bothering her hand and wrist, so I thought I'd make a batch of this pretty quickly and send some home with her. It's hard to cook with a brace on your hand. Luckily I had all the ingredients in the house.

So let's gather ingredients for tonight's dinner::


Trinity and sausage in the cast iron skillet:


All cooked:


Plated on square ivory Fiesta:


I divided this batch into thirds and sent 1/3 home with my sister, 1/3 to my Mom and kept 1/3 here for us. Hooray for Tupperware!

Dirty Rice 2 onions, chopped 1 stalk celery, chopped 1 green bell pepper, chopped 2 cloves minced garlic 4 Tbsp fresh chopped parsley 1 lb uncooked bulk sausage Creole seasoning (I use Tony Chachere’s), to taste 6 cups cooked rice chopped fresh parsley, for garnish Place your large cast iron skillet on the stove over medium heat. I typically use my chicken fryer because it is deeper, but an enamelled cast iron Dutch oven such as Staub or Le Creuset works well, too. Add the trinity (onion, celery, bell pepper), garlic, parsley, and sausage. Break up sausage and cook altogether, stirring periodically, until the sausage is cooked through and the vegetables are tender. Onion should be translucent. Stir in the Creole seasoning. Fold in rice and continue cooking until rice is heated through. Taste and adjust seasonings. Plate and sprinkle with fresh parsley to serve. Notes: 1. If you want to make traditional dirty rice, chop fine a pound of chicken livers and giblets to cook with the trinity. Sausage is optional at this point. You could also add ground meat, if you like. If you are only using the chicken parts for your protein, you will need add some oil to prevent sticking. 2. We like this dish with some heat, so I use hot sausage, but mild is perfectly acceptable if that's more in line with your taste. 3. Either pork or turkey sausage can be used.

namasté,

All Bran Bread (part 3) and a proud Mom

OK. I admit it right at the start. This is a proud Mom post. Yesterday DD#2 came home from school and asked me would it be OK for her to bake some of the All Bran Bread. I was delighted and e-mailed her the link to my blog post with the recipe. Then off she went to the kitchen with her laptop. She had a couple of questions about where a couple of the ingredients lived, but that was it. Several hours later, this loaf is what she produced. Isn't it beautiful? It tasted great, too. I used a couple of slices today to make my pimento cheese sandwich for lunch.

Good job, baby! Your first time to ever attempt baking bread and it was a resounding success. I'm very proud of you.


P.S. After she finished baking, she made sure to tell me and note on the grocery list that we need more whole wheat flour. That was nice. I also love the way she has no fear or trepidation of doing anything in the kitchen. If she decides she wants to make something, she can get a recipe and go after it.

namasté,