I want to announce that I hae officially been gypped of my "good day."  Friday used to be my good day.  One day past chemo was always afairly good day due to the steroids that they give me as a part of my pre-meds

Introduce Epirubicin, and VOILA!   I now "crash," and feel tireder an ever in the evenings  But because my mind is reeling, need Abien.

And once again I am falling asleep. SOO, sleeping is what my body must need.

Love to all of you!

Just checking in to let you know that chemo went well, but I'm completely wiped out. And thus starts 4 days from hell. Paul's parents are here with me to help take care, and my mom will come down tomorrow if I want her here. 

I need to sleep...

He did give me the third drug, but only about half of what I had last time.

I just fell alseep again.  I'll talk to you guys later!!

Someone pointed out to me that I hadn't updated since Wednesday.  I don't want anyone to worry, so I'm just checking in.  I'm doing fine, just very tired at night, and am crashing pretty early, so very limited internet time.

Chemo is set for Thursday, and I think I'm healthy enough to poison again.

I slept on and off until 3:30 PM on Saturday.  I can't believe I was that tired.  But I guess I was.

On the happy front, my boss, Michael, brought us a basketball hoop that his girls no longer use on Saturday.  Paul and the boys have had many enjoyable b-ball games this weekend.  Our hoop broke in one of the major windstorms that we had, and they had been very sad.

Paul and the girls have also been working on the "Rec Room" down in his workshop.  He cleared out about half of it (It's a 24'x24' outbuilding), and they're hanging panelling and curtains.  We've brought in a few couches, and are going to look on Craig's List for a used TV and DVD player.  The air hockey table is down there.  We're going to make a dividing curtain to shut off Paul's workshop side, and he added another window so that the rec room side gets more light.  Since we don't have a basement, this is our answer for a kids' hang-out.  Now, the kids know that if they have friends over, we can and will pop down there at any time.  And I've threatened to put in a security camera just to keep an eye on things.  Both girls have agreed to that, and understand that too much privacy can be a bad thing as far as temptation goes.  But it's almost finished, and almost ready for its inaugural party.

And there you have the weekend in a nutshell.

I have a book I'm supposed to be reading for work for a class tomorrow.  I must read...  See you later!

Got good news late yesterday.

My bloodwork was "beautiful" on Monday!  My hemoglobin has risen to 12.3, which is good on 2 fronts.  1. I'll have more energy with red cells, and 2. there isn't any internal bleeding (a marker that the doc was looking for).  AND my white cell count has risen from the tank.  It was 1.4 a week ago. It was 10.1 yesterday.  14 is "normal," but at least my immune system is back on track.  YAY!

Meleia has been going to the weight room with the volleyball coach M-Th for the past couple of weeks.  She's getting her tail kicked, but is getting in really good shape.  On top of that, she's playing soccer 3 nights a week.  This morning, she got up and said, "Mama, I don't think I want to go today.  I'm EXHAUSTED!  I let her skip.  I don't really know how I got such athletic kids.  Those of you who knew me in MS and HS KNOW that I wasn't that athletic!

Ciera had her first voice lesson yesterday.  I talked to my HS chorus teacher about it before we started, and he said that it would be fine, but not required for getting into a college voice program.  However, Ciera's choir teacher is of the opinion that she's "Behind" because we haven't been doing private voice for the past 2 years.  I finally told Ciera to stop saying that she was behind.  She is where she is.  And she'll be FINE.

Yes, DLHSers, I talked to Mr. King for about 30 minutes a couple of weeks ago.  It was fun.

As for yesterday... I want to remind myself out loud so that you can remind me... if I start having depressed, cyclical thinking, I need to take my anxiety meds.  I came home from work yesterday and took Xanax and a nap and felt much much better.  So, if you see me spinning in my brain, remind me, K?

Have a great Wednesday!

Have you ever had a song just nail you?  Maybe it's one you've heard hundreds of times, but due to your current life circumstances, it sounds different?

I have two songs that have nailed me that way in the past 24 hours.  And I just spent time writing out the lyrics of one for Ciera and will shortly write out the other for Meleia.  I want them to have the words in my writing.  Just in case they need to draw strength from them later.

For those of you who may outlive me, and may love my children for me after I have gone...

Remind Ciera that I hope she dances.

And remind Meleia of My Wish.

I haven't come across anything that makes me think of the boys yet.  For some reason, my musical heart is tied to the girls.  If, however, I don't find the perfect song for them, I'll likely write out the words to these two again and address them to my boys.

Not sure why I'm feeling so sad and resigned today...

Well,  when Dr. H says "Do you think you could park it on the 11th floor overnight for me?" I don't think I'll ever believe him again!  One night turned into 3.  The third night was actually the hospital's fault, though.

Remember how Ames said I needed a transfusion?  They didn't get the blood up to me until 7:00 PM!!!  So I couldn't leave on Thursday like I wanted to.  I had to wait until Friday.  And something happened during the transfusion.  I had a reaction of some sort to the first unit, and reached a new level of misery like I've never known.  I was burning up in my core, and freezing on my skin.  My chest hurt, and everything felt cold.  I was sincerely afraid that I was not going to wake up on Friday morning if I fell asleep during the transfusion.  And at one point, I was actually willing myself into the arms of Jesus.  Just so that it would be over.  When that first unit of blood was completed, they gave me Ambien, and I fell asleep with my mother rubbing my back.  On Friday morning, all was well.

Dr. H said that even though I was getting O positive, irradiated blood, that there must have been something in the blood serum that I was either allergic to, or had that horrible reaction to.  He said that he has a patient who has to get blood platelets on a bi-weekly basis, but he's allergic to strawberries.  Inevitably, he has an anaphylactic reaction to every infusion.  Especially in the summer. Because the person who donated had likely eaten strawberries.

I'm thankful that it wasn't my first transfusion, or I would be terrified of ever having another one.

Anyway, the ulcer medicine continues to work wonders.  We've got my tube feeds back up to "normal" levels, and I've actually eaten a little bit of solid food today.  The smell of burned toast nearly sent me OTE this morning, but I've got good nausea drugs.  I also have "Magic Mouthwash" for the mouth sores, and they're getting better.  My counts are likely still low, but everyone at home is being very careful around me.

Dr. H decided that he is either going to cut back or cut out the "new" third drug, as I've had such rediculous reactions to it.  He said that the regimin was already pretty heafty, and that adding the Epirubicin made it more toxic than I needed.  It also suppressed my bone marrow so much that it scared him.  My white and red counts both tanked very fast, despite the two shots they gave me to increase production of each.

I'm going to work tomorrow since I can't go to church and make up for at least one of the days I had to take unpaid last week.

On the swelling note, the lymphedema specialist recommended under armor, as it's tight and goes all the way up my leg.  Why on earth didn't WE think of that??  Since buying it, my left leg has softened, and the swelling in the thigh is much much reduced!

A few very specific prayer requests:

1. For Paul.  He's so depressed and worried that he's having a hard time functioning.  He needs to find a job, but he's nearly paralyzed with fear/dread/worry.  He's applying for teaching jobs, but not for anything else, and something else may be what we need right now.  BECAUSE

2.  I'm going to talk to work about cutting back to 3/4 time until this round of chemo is over.  It's at least 2 more treatments, so I'd be working 3/4 time the rest of the summer.  But I need time to heal.  Time to rest.  Time to get better.

So that's that.  I'm home, and it feels good to be here.  Thank you for all of your love and prayers!

Good morning Evie-Friends!  Amy here again!

Evie's mom just called.  PRAISE GOD!  Evie is MUCH better this morning!  They have gotten her pain under some control.  She's still in pain, but it's not the wretched, dire pain she's been in the last few days.  The doctor is prescribing her the medication that will coat her stomach and relieve some of the pain she's having there.  They're still unsure whether her tummy tube has poked a small hole in her stomach or if she has an ulcer.  But they have at least curbed her pain.  The bad news is that her hemoglobin is way down and she'll need 2 units of blood today before she can go home and her white blood count has completely tanked (1.2!) so she is extremely prone to infection right now.  They're putting her on a hefty round of antibiotics to hopefully ward off any infection.  She's already running some fever and they need to stop that now and hopefully prevent any deep-rooted infection.  She will be unable to have ANY visitors outside of family and even family will have to wash, wash, wash hands and be super extra careful.  She's very tired and stiff from hurting.  Her massage will take place in a few minutes, then she'll get her 2 units of blood.  The mouth sores are still an issue and she doesn't want to talk much because it hurts to talk.  But despite this, her mom said she's no longer in "utter misery."  So y'all keep praying!  And thank you for the prayers thus far! 

Hi all!  Amy here.  I just got a text message on my cell phone from Evie.  I'm not sure if everyone who follows her blog knows that she had to be admitted to the hospital yesterday. 

Her chemo last week has left her in dire pain in her stomach.  They added a new, different drug to the cocktail of treatment.  Usually her day after chemo is her "good day" and then the day following that is "bad."  Well, last week, her "good day" turned into a nightmare of pain.  She was seriously dreading her "bad day" if her good day was that bad.  Unfortunately, it got significantly and progressively worse and she had to be admitted to the hospital yesterday for this pain.

They did a number of tests concluding with a CT scan last night to see if they could determine the source of the pain.  From talking to her mom, morphine wasn't even touching her pain. 

The results of the CT scan this morning were not favorable.  Unfortunately the discovered that despite the treatment, the tumor is growing.  Ev's message specifically said she couldn't talk without crying so I'm trying really hard to respect that and not call.  When I do get further information, I will come back and post.  She said if they could bring her pain under control, she would get to go home tonight. 

Please step up your prayers.  Evie's fighting such a battle and right now, she's just not winning this one.  Please, please pray with me for her! 

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ADDITIONAL UPDATE!!!!!!

I just had a call from Evie's mom.  After talking to her SIL who is at the hospital with Evie, she said she (the aunt) didn't feel like Evie would be up to going home tonight because while the pain in better now, it's still not completely managed so she didn't know whether Ev would go home tonight or not at this point.

There is some HOPE for some good news to come.  The tumor has grown.  This is the residual tumor left from what they took out in November.  It was 6cm then and is 10 cm now.  However, Evie had a CT scan in February and they're not sure what the size was THEN.  So if the tumor had grown between November and February, say from 6cm to 12 cm, then although it's 10cm NOW, it would show them that the treatment IS working and is shrinking it.  But until they have those results in hand, they won't fully know.  The plan right now is for 2 more rounds of chemo 3 weeks apart.  Her primary oncologist is consulting with the radiation oncologist to determine if another round of radiation could have any better results. 

Well, I found out something interesting today.  I posted a few days ago about Lymphedema and how my leg is getting unbearable.  Well, today, my mom's friend, Sandy, found this article. In it, it tells about how lymphedema can cause fevers because lymph is supposed to be "laundered" as it moves through the system.  If the toxic stuff builds up too much, it can cause infection and fevers.

Remember my "mystery fever" before chemo last time?

Now, I know that Dr. H hasn't dealt with this a lot, or he'd know that it could cause the fever.  But now that I have this tidbit of information, I'm going to go in armed on Thursday and not let him postpone treatment.

Oh yeah... because I have a fever again...

At least I'm producing red blood cells, right?

I called the doc on Friday to find out what my blood test on Thursday said.  But they were already gone  So they got back to me this morning.  Guess what?!?!?!

My white counts are incredible, showing no drop at all.

AND, my hemoglobin was "borderline anemic."  I said, "I'm always anemic, what does THAT mean, and she said, " 11.2."  ELEVEN POINT TWO!!!  3 weeks ago Wednesday, it was 8.1.  I'm making red cells on my own again!!!!!!  YAY!!!!!!

Between 3 transfusions, an iron infusion, and 3 shots of Aranesp (#4 to follow on Thursday), my body has finally kicked into gear and appears to be making the red cells that we've been begging it to make.

11.2.... Unbelievable