01-01-2011 On Prednisone

Happy New Year!  I was able to get a hold of my oncologist (who actually emailed me from her vacation to let me know that the cancer center was closed yesterday).  And she was able to call in a prescription for Prednisone to my local pharmacy.  I think it is working, the rashes are getting less.

But I forgot how Prednisone changes everything!  The bizarre happy side effect is that I have a ton of energy.  My body wants to go go go, but my lungs won't let me.  I felt great walking the dog, from a muscular point of view, but after two or three blocks just couldn't breath anymore.

The other funny side effect is that I am HUNGRY.  I haven't had much appetite because of the Sprycel, but Prednisone makes you starving all the damn time!

So with my new found energy, I took down the seasonal shrubbery.   And moved my favorite big red chair into the living room by the piano, where the tree was.  Oops, not a tree, a seasonal shrubbery.  And actually JR moved it. Poor man, doesn't like projects that he was not given notice of.  But when he mentioned that, again, I burst into tears, since I never know when I will have energy to do these things.

The other fun thing, we got a Total Gym for the holidays for ourselves, and I am having the best time with it.  It is fun to use, not hard on the joints at all, and there are a ton of different things you can do with it.  And it is now where the big red chair was on the landing, and thus the reason for bringing the red chair downstairs.

Well, I am off to try and cleanse my skin, it is beginning to heal, but that means things itch.  Sigh.

Caroline

12-31-10 Is this year over yet?

Sorry I have been so silent lately,  I am somewhat stabilized on the drugs I guess.  And this is my new normal.  My biggest issue is that I don't have any of my lovely "bounce" back.  And I am having some nasty skin issues this week.  Of course it is a holiday weekend.  And no one is returning my calls or emails.  At either Cancer Center.

I posted the question regarding the skin issues on the discussion boards  (http://community.lls.org/community/bloodcancer/livingwith/cml) but the boards are having technical issues and I don't have any responses yet.

But those boards are absolutely a life saver for me.  There is a discussion group for just about everyone, caregivers, family members and each type of leukemia group has a sub discussion about what it is like to live with this crap.

I am hoping that the new year is better.

I have three resolutions for the new year.  Each designed to bring some more fun back.
1.  Make a new recipe once a week.
2.  Go to see each of the different month's exhibits at the Conservatory http://www.metroparkstacoma.org/page.php?id=21
3.  Get out and do one cool Tacoma event per month.  This town actually has a lot to do, and I am just hiding here in my house.

I went to the conservatory this week to see the Paperwhite exhibit.  They had amazing amaryllis as well.

Well, that about wraps up my year.

I wish everyone the best of health and happiness in the coming year.

Caroline

12-19-10 Fabulous Cookie Swap

Yesterday was the second annual cookie swap here at Casa Edmiston.  What a grand time was had!!!!  About 12 people showed up all bearing tons of cookies, so much so that we had to get a second table out of the garage to hold them all.  I had originally set up a 6 foot table, but half way through it was completely full!!!

I had spent quite a bit of time and energy to clean the house, which, I have to say, looks amazing when all the clutter is gone.  Sigh.  And I baked 6 different types of cookies to make sure that there was enough.  Which was a good thing since the first guest was a bit odd.  She asked to come a half an hour early, I thought to drop off her  cookies and then return later to pick up an assortment.  No, she wanted to take her assortment right away, she had another party to go to, and she needed to bring cookies to that one.  WHAT?  You want to take half of the cookies that I had baked before any of my other guests get there?  She is one weirdo.  I was so stunned, I let her.

But like I said, there were do many fantastic cookies brought by all, that it was ok in the end.

Everyone stayed for a very long time, for which I am truly grateful, I understand that this was the weekend before christmas and there was lots to do for everyone.  So it was doubly cool that they took the time.

I find the hardest part of hostessing is trying to sit and talk with everyone.  The house is really set up into two conversation areas, and I was bouncing back and forth between them, trying to make sure that everyone got some attention.  I even had guests from as far away as North Seattle and Snoqualmie and Olympia.  Very touched that everyone made it.

I was terribly clever and made a bunch of food that was pre-done, nothing had to be tended to once the guests got here.  Some deli meat and cheese, crackers, rolls, deviled eggs, Boy Dip (a mexican style dip that men just LOVE--it makes them grunt in happiness---truly, it is so funny to watch them, I have even seen one man hover over the crockpot that is filled with the meaty dip and glare at anyone who comes to take some, all without realizing he was doing that.  *giggles*), potato chips and dip, and all the coffee, tea and cocoa one could drink.

I think our coffee maker (a Keurig) made a few more converts at the ease and fantasticness of the coffee it makes.

I am paying for all the work and energy today, but it was totally worth it!  By last night, there was a lot of angry skin problems, couldn't sleep, my feet were burning up, and I was just exhausted.  Today there are other problems, but again, totally worth it!!!

I will NOT let Leukemia stop me.  I had an interesting thought the other day while listening to a Country song.  Dying is easy.  Living is hard work.

Kind of a downer ending to a happy post.  But real.

12-17-10 Holiday Cookies

Tomorrow is my annual cookie swap, so I have been slowly cleaning the house, don't really know what happened to the girl that was helping me, she called in sick one week, and poof, she was gone.  Oh well.  Have to find someone else I suppose.

The cookies have all come out great.  I made about 7 different cookies, with at least 4 dozen of each.  Each guest will bring their own 4 dozen cookies and we will all swap them out.  I have purchased cookie boxes so people can wrap them up and be ready to distribute as gifts!

I am looking forward to this a great deal.

So last I had written, the hot tub broke, the basement flooded and the tarp had blown off the trailer.  JR unfortunately said "well, at least the house won't fall down in the next week."

Silly man, tempting fate like that.

Three days ago, I went out the front door, and the house was falling down.  Specifically the gutter was hanging by a thread on the side of the porch.

I just laughed.  There was nothing I could do.  It wasn't going to go anywhere.  Ah well.

JR did not find any humor in it.  Sadly.

And then our neighbor Brian earned the Best Neighbor of the Week award.  Yesterday he knocked on the front door and asked me if I would like him to repair the gutter!  OMG!  Can you say fabulous.

So he took our ladder and 10 minutes later had fixed it!!!!!  He got my undying gratitude and a box of cookies!

This was the day after the window guy called me at 8:30 in the morning to tell me he was on his way.  (we did not have an appointment)  I was on my way out of town to Seattle for the day to see a client.  I phone up Bill on the other side of us, and he agreed to come over and supervise the window guy and lock up the house.

At the drop of a hat.

I have the BEST neighbors!!!!!

Also just had a wonderful holiday lunch with Steve and his wife, Jeanne.  Such nice people!  We met at Anthony's Seaport in Des Moines.  Yummmm.   And now I am going to crash.

I had three good days in a row and am now exhausted from feeling well.  I even managed to sleep the whole night through last night!  Woo Hoo.

Happy cookies to everyone.  And yay for congress for fixing the estate tax issue.....more on that later.  must nap now.

Been a While

So the latest Dr. report says the white blood cells are holding in the normal range, the red blood cells are as well.  The drug has worked remarkably well for that.  There is some concern with my liver numbers (don't know what that means) and she is concerned that the side effects are so severe still.  So we have another appointment in 2 weeks to check blood levels again.  If I am not doing better with side effects, she wants to talk about switching the medication.  I am not thrilled with this idea.  Better the devil you know..........at least this one is working!

Am now battling with the pharmacy company.  They cancelled my prescription without any documentation of why, and never called me.  Sigh.  They have apologized, but they have to redo the whole thing, and it takes time.  So I am almost out of medication and waiting for them to get their act together.  They also did something weird with the overall prescription and modified it from its 1 year amount to only a 3 month amount and now want a new prescription from the Dr. for the next shipment after this screwed up one.  But it took me 20 minutes to get that information out of them.  When were they going to tell me that little tidbit????

I have decided that I do not like having leukemia and want it to go away now....................I am tired of this.

Also, the basement flooded.  And the hot tub broke.  And the tarp blew off the trailer.  And JR is gone for two weeks with the Army.

Ack.   All of this will get sorted out.  Chin up, right?

11-28-10 Funny bits

I saw these on the internet and decided to share a laugh or two with everyone.  I have bolded the ones I like best.

Ø Do not argue with an idiot. He will drag you down to his level and beat you with experience. 

Ø Going to church doesn't make you religious any more than standing in a garage makes you a car.

Ø  The last thing I want to do is hurt you, but it's still on the list.

Ø  Light travels faster than sound. This is why some people appear bright until you hear them speak.

Ø If I agreed with you, we'd both be wrong.

Ø  We never really grow up, we only learn how to act in public. 

Ø  War does not determine who is right - only who is left.

Ø  Knowledge is knowing a tomato is a fruit; Wisdom is not putting it in a fruit salad.

Ø  The early bird might get the worm, but the second mouse gets the cheese.

Ø  Evening news is where they begin with 'Good evening', and then proceed to tell you why it isn't.

Ø  To steal ideas from one person is plagiarism; To steal from many is research.

Ø  A bus station is where a bus stops. A train station is where a train stops. On my desk, I have a work station.

Ø  How is it one careless match can start a forest fire, but it takes a whole box to start a campfire?

Ø  Some people are like Slinkies ... not really good for anything, but you can't help smiling when you see one tumble down the stairs.

Ø   Dolphins are so smart that within a few weeks of captivity, they can train people to stand on the very edge of the pool and throw them fish.  

Ø  I thought I wanted a career, turns out I just wanted pay checks.  

Ø   A bank is a place that will lend you money, if you can prove that you don't need it.  

Ø   I didn't say it was your fault, I said I was blaming you.  

Ø   Why does someone believe you when you say there are four billion stars, but check when you say the paint is wet?  

Ø   Why do Americans choose from just two people to run for president and 50 for Miss America? 

Ø   Behind every successful man is his woman; behind the fall of a successful man is usually another woman.  

Ø   A clear conscience is usually the sign of a bad memory.  

Ø   You do not need a parachute to skydive. You only need a parachute to skydive twice. 

Ø   The voices in my head may not be real, but they have some good ideas!  

Ø   Always borrow money from a pessimist. He won't expect it back.  

Ø   A diplomat is someone who can tell you to go to hell in such a way that you will look forward to the trip.  

Ø   Hospitality:  making your guests feel like they're at home, even if you wish they were.  

Ø   Money can't buy happiness, but it sure makes misery easier to live with. 

Ø  Some cause happiness wherever they go. Others whenever they go.  

Ø   I always take life with a grain of salt, plus a slice of lemon, and a shot of tequila.  

Ø   When tempted to fight fire with fire, remember that the Fire Department usually uses water.  

Ø   You're never too old to learn something stupid. 

Ø   To be sure of hitting the target, shoot first and call whatever you hit the target.  
  

Ø   Nostalgia isn't what it used to be.  
  

Ø   Some people hear voices. Some see invisible people. Others have no imagination whatsoever.  
  

Ø   A bus is a vehicle that runs twice as fast when you are after it as when you are in it.  
  

Ø  Change is inevitable, except from a vending machine.

11-26-10 Best Envelope EVER

For everyone that has been following along with the funniest envelopes sent from Mom,  the latest takes the cake!!!!

"Princess C. R. Edmiston HRH and her consorts, JR and Chase."

LOVE IT!  Made us both laugh out loud.

Thanks Mom!!!