My post from the leukemia boards

I posted this this morning on the discussion boards at the LLS site: 

Last night when we got home from the onc visit, wherein she told me she was surprised I was still so fatigued, and was I sure I wasn't um, er, perhaps depressed?  Luckily, my husband was sitting next to me and assured her it was not depression, I was too floored to really respond.  (mind you I had gone to her recommended psychiatrist, then her recommended psychologist, and had just had the cognitive testing she recommended--Each of them telling me I wasn't depressed, that my reactions were normal for the situation, and that there WAS some cognitive rehab they could offer for the missing abilities)  Then she recommended physical therapy, again, tears in my eyes, but this time sighed deeply and said "ok, if you think it will help."  And she happily wrote out the referral, talking about how getting some exercise will be beneficial.  But I get exercise, I tried to tell her.  I walk the dog almost a mile a day in the morning, then putter around all day long doing things.  Yes, there is significant couch time, but as soon as I get a breather in, I get back up. 

And then she said if that didn't work, I might want to try Ritalin.  Yup.  Ritalin.  My mouth fell open and I said, really I was lucky enough to have the luxury of being able to slow my life down, husband was picking up financial slack, and I would prefer not to be on Ritalin.  Not an extra drug thank you very much.

And no, she is not just a regular onc, she is a CML expert, doing all kinds of research at Fred Hutch.  Her latest trial is for some add-ons to gleevec trying to isolate and destroy the T-cell that causes all this. 

So back to my story: we get home, and Accredo has not delivered the package of Sprycel like I was told they would 2 weeks ago.  I am now down to just a few pills.  I call them, and although it is after hours, they have someone who answers the phone, looks up my information, and tells me it was never ordered. 

I fell apart.

How can it be this hard.  All the time.  And this is a specialty pharmacy, they KNOW what these drugs are for. 

The nice woman on the phone kept apologizing and said she has reordered it.  I thanked her, hung up and fell on the floor crying and hugging the dog.  Husband came over, crawled over next to us and held me. (he rocks!)

But I called this morning to check up on her.  Turns out she was smoking crack.  It was ordered and supposedly going to be delivered today, not yesterday.  They had the tracking number and everything.  Could see it on the truck, should be here in 45 minutes.

So all of that last night was for nothing!  I told the new person on the phone what had happened and then wished bad things to happen to the first person.  I immediately quantified what bad was (I don't need no more bad karma! --bad grammar on purpose): she should not be able to find her car keys for two hours. 

Person on phone laughed. 

Sigh.

Did I mention I have bronchitis, was treated like a leper at the cancer center, and just about passed out when I was told to take a deep breath and started hacking up a lung.  (I don't mind the leper part, I would never want to make anyone else sick, especially a compromised immune system person).

So, to all those who think this is a walk in the park...............I blow huge raspberries at you, and hope you never have to find out for yourselves how hard this is.

Caroline

04-08-11 Bronchitis

So it is not a cold.  It is asthmatic bronchitis.  And they cancelled my Bone Marrow Biopsy.  Sigh.  Apparently I should be well before they drill me.

JR came home, YAY!!!! it is so nice to be able to just sit back and be sick, and not have to worry about walking the dog.

More later.........I have to go hack up a lung now.

04-01-11 Anniversary and Baking Galore

I have caught a cold.  This sucks.  I was going to catch up on some work, had no clients/appointments/other things to do for a couple of days.  And now I am sick.  Rats.

Today is our third Anniversary.  I stopped for a moment earlier to ponder the idea that exactly three years ago at that precise moment, I was getting my toes done and scampering off to find the groom at the golf course to collect him for our wedding.  It feels like we have been married forever and for five minutes all at the same time.

To celebrate our anniversary, I sent JR a cake.  An amazing cake.  He is on a mission in El Paso at Fort Bliss.  I found the recipe in the latest Country Woman magazine that my mother in law sends me a subscription for.  This is the simplest cake recipe on the planet.  And so dense and rich and moist.  You must try it.  It all mixes up in a sauce pan on the stove top, then pop it in the oven and poof!  Chocolate cake.  With a surprise ingredient.  Guinness Beer.  I didn't make the icing, just put the entire spring form pan in a cake carrier and sent it off to him to share with his buddies.  Of course I doubled the recipe and made two of them, so I could try it before sending it off.  This is an amazing recipe.

Chocolate Guinness Cake

Ingredients

• 1 cup Guinness (dark beer)
• 1/2 cup butter, cubed
• 2 cups sugar
• 3/4 cup baking cocoa
• 2 eggs, beaten
• 2/3 cup sour cream
• 3 teaspoons vanilla extract
• 2 cups all-purpose flour
• 1-1/2 teaspoons baking soda
• 
  TOPPING:
• 1 package (8 ounces) cream cheese, softened
• 1-1/2 cups confectioners' sugar
• 1/2 cup heavy whipping cream

Directions

• Grease a 9-in. springform pan and line the bottom with parchment paper; set aside.
• In a small saucepan, heat beer and butter until butter is melted. Remove from the heat; whisk in sugar and cocoa until blended. Combine the eggs, sour cream and vanilla; whisk into beer mixture. Combine flour and baking soda; whisk into beer mixture until smooth. Pour batter into prepared pan.
• Bake at 350° for 45-50 minutes or until a toothpick inserted near the center comes out clean. Cool completely in pan on a wire rack. Remove sides of pan.
• In a large bowl, beat cream cheese until fluffy. Add confectioners’ sugar and cream; beat until smooth (do not overbeat). Remove cake from the pan and place on a platter or cake stand. Ice top of cake so that it resembles a frothy pint of beer. Refrigerate leftovers. Yield: 12 servings.

I don't know about the 12 servings..........I guess if you gave out little tiny slices..........

Also, the nettles were as delicious as I remembered them being.  Like spinach but better.  I can't explain it.  You just have to get some and try it.  I made a chicken based soup stock, added the nettles, some chicken, some Israeli cous cous, and poof!  Yummy yummy soup.

And then today I have been baking bread. I really wanted some toast, but don't want to go to the store, so thinking that I really do own everything needed to make some bread, it would be silly not to.  So I did.  I used the recipe for no kneading bread that Aunt Fay sent me the book about.  Made two loaves.  House smells great.   I can't wait until it cools enough to have a slice.  

Kate is coming over tomorrow and I shall give her the other loaf.  She loves this bread.  

And I immediately put another batch together in the same bread bucket, so as soon as I am done with this loaf, I can make more.  I don't know why I stopped making this bread, it is ridiculously easy. 

No Knead Bread 

• 3 cups water, filtered and no more than 100 degrees
• 1 1/2 tablespoons salt
• 1 1/2 tablespoons yeast
• 6 1/2 cups flour, AP
• flour, for dusting

Directions:

Prep Time: 10 mins

Total Time: 50 mins

1. 1 Measure water, salt and yeast into a large plastic container with a loose fitting lid.
2. 2 Stir in the flour. Sometimes it is stiffer than others but it should be a wet looking mess when you are done stirring. Do not knead.
3. 3 Put the lid on loosely and let rest for 4 - 6 hours on the counter. Refrigerate loosely covered overnight or up to 10 days. The longer it rests in the fridge the more flavor it develops.
4. 4 On baking day, heavily flour the dough and cut into halves  I bake two pound loaves because we devour this bread. Scoop the dough into a long or round loaf and put into greased bread loaf pans. (you can also bake this on a baking stone in the oven and get more of an artisan look).  I cut the dough in half with a bench knife while it is still in the dough bucket and get a nice oval shape that way.
5. 5 Let sit on the counter for 40 minutes.  Preheat your oven 450 degrees. Put a broiler pan under the loaf pans. Let the oven heat for 20-30 minutes. Heavily dust the top of the loaf with flour.
6. 6 Slash the loaf with a very sharp knife or lame. If your bread is round slash a tic tac toe pattern into it and for a long loaf slash it 3 or 4 times diagonally. This helps the bread pouf up during baking. Put the bread in the oven and  immediately pour 1 cup of hot water into a broiler pan and shut the oven door for 10 minutes. Toss a couple of ice cubes into the oven after the first ten minutes if you are baking a 2 pound loaf.
7. 7 Bake one pound loaves for 40 minutes and two pound loaves for 45 minutes.
8. 8 Cool on a wire rack and please try to resist cutting it until it is totally cool or it will not be crispy on the outside and chewy in the center.

That's enough baking for one day.

Happy Anniversary Darling Husband!!!!

Caroline