- Not tons, but I slept well last night.
- Sleep seems to make a difference
- Giving me an altered dose of Epirubicin plus Aranesp and Neulasta helped my counts
- THEY DIDN'T TANK!
- Mama talked to Dr. H
- He said that I'm just in a bad place in treatment
- Treatment 4 in round 2 of chemo is a black place
- I'd be superhuman if I weren't droopy and down.
- Then he upped my antidepressants again
- My dad came today and just did work on the couch while I was working in the chair
- It was nice to have a body right there all day
- Maybe isolation isn't good for me
- Dr. H said that his short term goal is that I will feel great for Florida.
- His long term goal is that I have too much to live for to die young
- Treatment is just hard
- I love otter pops on a hot day!
- I'm glad Colton stuck some in the freezer!
- Keep prayin'!
Uncategorized
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A better day
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Just checking in...
- Not feeling very good
- Today's the day my counts tank
- I have to get up and dressed and head to the hospital for a blood draw
- Don't feel like going
- Received a major gift over the weekend- an adjustable hospital-type bed
- Thank you so much, Mary & Matt. Be watching your mail...
- Yes, a hospital bed means that I'm very sick. I am very sick.
- I'm praying that I have the strength and energy to go to WDW in the fall
- Right now, it doesn't feel like I'll be able to
- It's probably the chemo that's making me feel this way
- But I'm really depressed and worn down
- No job leads for Paul
- Not sure how much longer we can hang on without one
- I've cut back to 30 hours at work
- MIL & FIL aren't answering their cell phones.
- They're supposedly leaving tomorrow with the girls
- I don't want my girls that far away from me, but they deserve a break
- Can't wait for my parents to be "back"
- Even though we've talked every day, I wish they were closer, too.
- Paul and I did a lot of crying this morning
- Keep praying...
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The weekend is over...
I'm still weary and a bit tottery on my feet. I'm working from home today, and have managed to keep my brain focused so far this morning, which is good.
It's going to be 90 degrees here today. Ick ick ICK! I'm thankful for the window AC.
My parents left for the mountains this morning for a long-needed vacation. I hope that they're able to enjoy themselves. I've needed Mama most weekends when Daddy has been home, so I'm glad that they're together and alone. MIL and FIL are here taking care of my family through Wednesday, when my counts will likely drop.
Paul and the kids tried to set up the pool yesterday, and evidently blew something in the well out... yay. So, I guess I know what Paul will spend his 90 degree day doing...
OK, back to work. Just wanted to tell you that I made it through the weekend...
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I've been gypped...
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!
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Chemo
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!!
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Checking in
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!
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Bloodwork
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!
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Music
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...
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It's me!
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!
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Thursday Morning Update
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!
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