Had a good 3 weeks

But today is not so hot.  Very tired and nausea in high gear.  I managed to force myself to do a bit of work, which unfortunately (or fortunately, depends on your point of view) has created more work.  I will think about that all tomorrow.

One of the recurring thoughts that this disease brings on is the monitoring of medications and what will happen in the future.  Hopefully, JR will retire from the Army (waivers and such might be needed--very long story for another blog, not this one) and we will have Tricare which works as the plan b for medicare.  I think I have that right.  The question is of course, will they cover me, and how will that work with my drug.

Fortunately, for those of us with CML, there is the world's best information site, the Leukemia and Lymphoma Society website: http://community.lls.org/community/bloodcancer/livingwith/cml?view=discussions&start=0 where you will find others with this disease who can answer your questions with real information or just lend a shoulder to cry on.

One of the recent discussions was how Tricare works for us.  I wanted to be sure to save this information so I am posting a response here that discusses how the system can be worked properly:
I actually talked with someone else at Express Scripts (TriCare Mail Order Pharmacy co.) and the true story is they offer 45 day supplies of Gleevec instead of 90.  However, if your oncologist (or PA, Nurse Practititioner) calls and asks for a quantity over-ride, they will authorize the increased amount a year at a time (on a case by case basis.)  The phone number for the quantity limit over-ride is: 866-684-4488 and phone number for Express Scripts is: 877-363-1303.  Since Gleevec is on their formulary, it is a $9 co-pay (can't beat that!)  I'm not sure on their coverage for Sprycel but I wish you luck!!  Lisa


Right now we are covered under the Railroad plan, so I get my meds from Accredo, the specialty pharmacy branch of Medco.  


Today also brought more medical stuff.  I am about to run out of Ambien, which I need on occasion to get to sleep.  Sometimes the meds make me wiggly and I have muscle spasms which make it hard to get to sleep.  Unfortunately, my PCP (primary care physician) has retired.  And trying to find a new one has been hard.  I am on the waiting list for one, but that won't happen in time for my Ambien.  So I had to ask my onc for a prescription for that.  Luckily she said yes.  But only wrote it for 30 days with 3 refills.  Sigh.  Medco will fill up to a 90 day supply.  So I am not sure if I have to call them 3 times and have them charge me 3 copays or if they will put them all in one bottle.  


And then there is the Meloxicam I take for my elbow and shoulder.  Again, since Dr. Fry (PCP) retired, I needed another source for that.  I also see an orthopedic specialist for that and he agreed to give me a prescription for that, but it just showed up today with only a 30 day supply and no refills.  Double sigh.  I don't think that 30 days is going to do it.  I have been on the stinking things for a year now, the problem is that the Sprycel I take for the Leukemia also prevents my shoulder and elbow from fixing themselves.  


And I am trying to amass all the meds I take as I am going out of town for about 2 and a half weeks.  Totally new for me to have to think about medication for that far in advance.  To make sure I have enough to take with me, and to have enough so that once I get home, there is enough until I can get more.  


Ok, back to the couch for me.  enough of this horrid sitting up business.


Tomorrow will be better.   But here is a couple of new photos one from the zoo (the otter) and one of a thistle out in the Port's wetland preserve.

Post Rummoli Party Exhaustion

So Sunday afternoon I hosted an all girls Rummoli party.  What is Rummoli you ask?  It is a really fun game that has elements of poker and rummy.  There is betting involved and it moves fast.  My friend, Jennifer D's family has been playing it for generations, and it is popular in Canada.  Most people make their own boards, so of course, off I went to Home Depot and the fabric store.  It took me about 2 hours to figure out how to cut the board into a perfect octagon, but once that was done, and covered with green felt, I had a blast with the sequins and glitter.  It is a SPARKLY board.

I made some finger sandwiches and purchased pretzels and cookies.  I felt bad that I did not make every last item from scratch. But I cut myself that slack I was talking about and just went with buying really good quality cookies.

We had a blast.

Today, it is almost 2 pm, and I am finally getting moving.  Just could not move this morning.  I had spent most of last week cleaning the house to get ready for the party and Dad's visit on Thursday.  He is stopping by for one day on his way to Alaska to go fishing.  I think we shall go to the zoo.  There are two new baby snow leopards that have just been born and a new red wolf exhibit I haven't seen yet.  Lots of photo opportunities! It will be fun.

I also figured out why there were harbor seals up the river, the salmon are running!  The dog and I walk along the Puyallup River, down near the mouth of it and that is all Indian land, so the non-Native American's cannot fish that area, I was driving to the pickle farm to get some fabulous tomatoes, and saw all the guys lined up along river road, fishing their hearts out.  Mystery solved.

And now I need a nap.

For those who want to play Rummoli, here are the rules and a picture of the board:

Rummoli can be played by two to eight players on the "Rummoli" playing surface with a standard deck of playing cards (minus the Joker) and counters or chips.

To Start the Game-The players cut the cards to determine the dealer of the original hand- Ace is high. The playing chips or counters are divided evenly among the players. Each player places a counter on each of the nine sections of the playing cover and the dealer deals out the cards, one at a time, dealing an extra hand which is known as the "Widow". Some players may have more cards than others, but this is of no consequence.

After looking at the cards in his own hand, the dealer may, if he so desires, exchange his hand for the "Widow", but must not look at the cards in the "Widow" before the exchange is made. If the dealer decides to play his original hand, he may auction the "Widow" to the highest bidder among the other players, and he, of course, keeps the proceeds.

Any player making an exchange of his hand for the "Widow" must accept the "Widow" even though it should turn out to be a poorer hand than his original hand. The hand which is exchanged for the "Widow" is dead, and not used at all in the play. It should be placed face down so that the cards are not known to any other player.

Method of Play-There are two parts to the game which are described in detail as follows:

Poker Play-Each player selects from his hand the five cards which he thinks will make the most powerful poker hand and lays aside, for the time being, the remainder of his cards face down.

This part of the game may be played in two different ways and the players should agree beforehand which method is to be used.

Method No. 1. The players may arrange to have a "showdown" of the poker hands, each player placing his hand on the table face up, and the player having the hand with the greatest poker value takes all the chips in the "Poker Pot"

or
Method No. 2. The players may bet and raise the bet as in a regular poker game and all bets should be placed in the "Poker Pot". The player who forces all other players out of the game or who has the best poker hand when hands are shown takes all the counters in the "Poker Pot". A player who has been forced out of the betting cannot participate in the Pot even though he discovers later that he had the best hand.

Rummy Play-The players now pick up the cards they laid aside for the Poker Play and arrange their entire original hand in suits. The winner of the Poker hand now places on the table face up the lowest card in his hand calling it aloud. The play passes to the left and the player having the next consecutive card or cards in the same suit plays it or them face up before him. The play continues in this manner until the ace of the suit has been played or until the continuity of play is broken by a card being in the dead hand. When a suit is closed by the playing of the ace or blocked by a card being in the dead hand, the player who played the last card now plays the lowest card in his hand in a suit of a different colour to the suit last played and play continues in this manner until all suits have been run out. If a deadlock occurs, that is if no player is able to change the colour of the suit, the hand is finished and each player must place in the "Rummoli" section a chip for each card he has left in his hand.

Pay Cards-On the Rummoli playing cover there are seven spaces marked with certain cards or combination of cards. As a player lays down one of these cards or sequences he collects the chips on the space marked the same as the card or cards he has played.

The first player to get rid of all his cards collects the chips on the space marked "Rummoli" and this marks the end of one hand. All other players pay the winner a chip for each card left in his hand.

The deal passes to the left and at the start of each new hand each player places another chip on each of the nine spaces on the cover.

At the end of a hand it is quite likely that chips remain on some of the spaces owing to the fact that the cards are in the dead hand, or that no one player held the proper sequences in his hand, or that one player has got rid of all his cards thus ending the hand before another player had a chance to play his pay cards. Such chips are allowed to collect from hand to hand until a player can play the right card or cards to claim them.

To End the Game - At the conclusion of the game the players must decide among themselves how to dispose of chips remaining in any of the spaces. This may be arranged by simply cutting the pack and high man taking all the chips, or dealing to each player a poker hand (five cards) and the best poker hand wine all the chips remaining on the board.

Latest News

Last week was my 3 month check up with Dr. Oehler.  At that time she did another PCR test, which came back as undetectable.  This is fantastic.  It means that the drug is working, and has shut down the production of the BCR-ABL protein (the protein that turns the bone marrow on to produce the malignant white cells).  So my drug is working on two levels: it is stopping the production of the protein AND if any is produced, it is stopping my bone marrow from accepting it.

The bad news?  This is my new normal.  Dr. O was hoping that I would get more of my old self back, but has come to realize that it is almost a year, and this is probably it.  So each day is a challenge in figuring out what I can do, what I have the energy for, and whether I can focus enough to get any work done.  And what kind of medical issues need to be dealt with each day.

We are not discussing changing drugs since the Sprycel is working so well, and each of the TKI drugs has a bunch of side effects, mostly the same as the others, but with some major differences as well.

She also thinks that I am de-conditioned physically from this past year and wants me to take a physical class, to give myself more energy.  So she prescribed golf lessons!  And my fabulous husband was so excited, he paid for them!

The lessons started last night.  I had found a group lesson that meets twice a week for 3 weeks.  I had hoped to take an intermediate class, but the only class available is a "Women's Golf" class, and I was the only one there who had ever hit the ball before.  Sigh.  This is a very very basic class.  But I told myself not to be upset, and that going over the basics can be enlightening.  Each trainer has their own way of describing things.  I have loved one trainer, hated one, and been indifferent to two others.  This one is ok, and she gave me advice worth the price of admission.

The hardest part of playing golf with JR is that he LOVES to give advice.  Whether I want it or not.  And mostly I don't.  I need to figure out how to do this myself, or I won't learn it.  I am the one who needs to make the mistake and then correct for it.  Sadly, this irritates him.  He really really wants to "help" me and tell me what I am doing wrong.  I really really don't want to hear it.  It is one of the few times when we clash.

And then Molly (the golf instructor) said the most beautiful words ever, "Under the rules of golf, giving unsolicited advice is a two stroke penalty."  OMG.  Are you serious????  He isn't ALLOWED to give advice.  That rocks!

She also managed to fix the fact that all my shots go to the right.  I was holding my hands slightly wrong, and then she said, if your feet are lined up with the hole, your shot will go to the right.  Well, I could have sworn that I had been told by virtually everyone to line my feet up to the hole.  And I have a horrible habit of hitting to the right.  It is very discouraging.  But not now!  Now I will line up to the left of the hole.  And go straight.

I am actually really excited about getting out on the course again.  But I think the next lesson tomorrow is on how to swing your 7 iron.  Sigh.  Back to basics is good, back to basics is good, back to basics is good.

Also today, while walking the dog along the Puyallup River, I noticed a little head popping out of the water.  It was a harbor seal.  And then there were two, and then three and then five and then there was a baby pup swimming with its mama.  I stood there fascinated while the dog just wanted to go go go.  Sadly for him, we stayed and watched the seals for while.  I didn't realize that harbor seals would come up into fresh water, although maybe that part of the river is a mix of both, the estuary area, and perhaps there is yummy fishing there.

--Caroline

05-13-11 Happy Times

Last Thursday I had my second bone marrow biopsy.  Yesterday I had the results.  I am a year ahead of schedule (had I been given the older drug, Gleevec) and have reached Major Molecular Response!  This is the milestone one hopes for with this disease.  I still have Leukemia, I still have to take the drugs every single day, and I still have to have my blood tested, a lot.

BUT 95% of those that reach MMR do not progress beyond the chronic phase.

I must caution you, I do everything oddly, my body reacts to stuff strangely.  The real window of happiness will be at the two year mark.  If my body is going to start having mutations or reject the drugs, it will be mostly likely in the first two years.

But happiness all around!!!!

The side effects are still around, life has changed.  And I have the best, most supportive husband on the planet!

Happy Hugs,
Caroline

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