Friday, August 4, 2000
Sunday, July 30, 2000
Insomnia again last night. I doubt I'll have any trouble sleeping tonight. We went to church, then hightailed it to a Mercury game. I did a lot of jumping and shouting. Came home bushed. Laid down in bed and read the Sunday paper. Now lying in the La-Z-Boy chair and trying to stay awake to my normal time. My pelvis isn't too happy. I took some Aleve and will save the pain pill for bed time. Despite the pain, I wouldn't have traded today for anything. Lots of fun!Something my pastor said in today's sermon: Don't exaggerate your problems and minimize the power of God. Rather, look at your problems in the light of God's power and see how small they really are. Even as awful as breast cancer is, God's love and power in my life are working miracles every day.
posted by Karen Weber Sunday, July 30, 2000
Monday, July 31, 2000
I was right - I slept like a rock last night, after a pain pill and a really amazing thunderstorm. This morning I got up and went straight to a breakfast party with my Bible study group. After 2 hours of sitting on a hard chair at the party, I put off plans to have my car serviced. Came straight home, took a pain pill, and laid down. That was pretty much the whole day. Too much excitement packed into 24 hours I guess.My mouth has been very dry the last couple of days. Today, it's downright painful. I can't seem to keep it moist, no matter how much water I drink. I may have to try some artificial saliva after all. I have a sample and I'll use it at bedtime tonight. There's a small patch on my palate that feels like it's developing into a sore, and one entire side of my tongue is very sore as well. Tomorrow I have blood drawn at the oncologist's and I'll have the nurse take a look at it.
posted by Karen Weber Monday, July 31, 2000
Wednesday, August 2, 2000
Well, I was miserable yesterday. The cold is worse, and I took my last shot of Neupogen last night. I'm afraid that the cold might really sink its fangs into me now. I went to the Mercury game last night and was too wiped out to enjoy it. We got a good cushion at a medical supply store and that did help the pelvic pain somewhat. If I had remembered to stand during time outs, I think it would have been perfect. I was just too tired to remember. The people next to us didn't show up for the game, so I laid down across their seats at half-time. Still, when I got home, I went straight to bed. This morning I feel awful again - can't breath, head hurts, general body ache. I can't believe I'm scheduled for chemo next week when I'm already feeling awful. The nurse said that they might put it off if I still have a cold. I've also developed several sores on my tongue, including one right on the tip. I'm drinking so much water I might as well camp in the bathroom, but I can't seem to drink enough to keep my mouth moist. I haven't taken any meds for the cold because of this, so it's no wonder I feel rotten.
posted by Karen Weber Wednesday, August 2, 2000
Thursday, August 3, 2000
My tongue is really sore today. I had to get up several times in the night to put Anbesol on it. Rick made me some nice lukewarm soup for dinner last night. It wasn't what I was craving, but it didn't make my tongue hurt so I guess that's something.I had a meeting with my oncologist this morning. I took in the physician's information about Restless Legs Syndrome along with a detailed accounting of my medical history in this regard, including the results of a sleep EEG / EMG. I also documented how receiving chemotherapy affects my RLS, culminating in what are called Dyskinesias While Awake (DWA) otherwise known as the muscle spasms that plague me a few days post-chemo. With the documentation in front of him, he took me seriously instead of dismissing me. Which is good, since a third time of telling me that none of his other patients had ever had this happen would have been the last thing he would have said to me as my oncologist. He is now taking this very seriously, gave me a different oral antiemetic, and suggested some alterations in what we tried last time with the muscle relaxants that should make chemo quite a bit less frustrating for me. He also said that, in light of what he now knows about my medical history, I should expect to have more problems with Taxol than the average patient because of the peripheral neuropathy it causes. Needless to say, I expected this, but wasn't happy to hear it. He said that he would try to work more closely with me when we start the Taxol.
He also went over my blood counts with me. The hemoglobin went down this time, which explains the tiredness (along with the cold). The platelets are low, but not low enough that he's worried about them despite my reports of bloody noses. The Neupogen did its job on the white blood cell count, despite the fact that I developed the sores on my tongue. He said he couldn't explain that and said to stick with the Anbesol. My CEA (an indication of cancer cell activity) continues to be very, very low. Yipppeeee! I go back for more bloodwork next Thursday to make sure that the hemoglobin and platelets are recovered, then chemo on the 15th.
I talked about the pain from the Neupogen with him. He said there's nothing to be done except to take the pain pills and lay down. I have gotten next to no work done this week because I've taken the pain pills and laid down. Now my assistant has left on a 10 day vacation, so I can't do that. The pelvis isn't quite as painful today as it was yesterday, and I'm done with the Neupogen, so maybe I can start being up longer.
Oral complications of cancer and cancer therapy - here is some information about mouth inflammation and sores.
CEA as a Marker for Breast Cancer - a fairly technical look at the use of this marker.
posted by Karen Weber Thursday, August 3, 2000
Thursday, August 4, 2000
Well, good news and bad news. The good news is that my eyes can focus well enough today that I can see my temporary peach fuzz. Quite a lot of it is red! Hooray! So I won't be completely white after all.More good news. The pain in my pelvis is calmed down enough now that I'm sitting at my desktop computer. That's where the bad news comes in. I have a trackball on this computer and today I am having a real problem using it.I seem to be having a lot of trouble with very fine motor movements. I don't remember this from yesterday when I did some graphics work for motivationalquotes.com, but it's a definite problem today. No new medication, so that's not it. I just don't know.
My tongue is still developing new sores. I have lectured it, explained white blood cell counts to it, but there's just no reasoning with this thing. I sound like Daffy Duck, so I guess it's hard to take me seriously. I went out to Walgreen's last night to replenish my supply of mouthwash and toothpaste for dry mouths and I snuck home some malted milk balls. (Bad Karen!! Bad, Bad!) Well, I ate one of them and decided that it was too painful to be worth it. When pain outweighs a craving for chocolate, you know it's bad. Amazingly, though, almost as if she knew this would happen, my college roomie, Terri, sent me a care package. In it, along with a Detroit Shock cap (like I could wear that anywhere in Phoenix without being lynched!) and a Bob Seger CD, was a jar of hot fudge sauce. Now, I had suspected that I might have a problem with the malted milk balls, so I also snuck home some fudge ripple ice cream. This is all purely therapeutic, you know. The ice cream and hot fudge tasted great, Terri. You are a mind reader!
I also got a call from an old Jackson, MI, theater buddy, Patti. She is coming out to San Diego for 10 days and is going to take a couple days to come over here and rub my bald head. She disagrees with me about the Daffy Duck thing. She thinks I sound more like Elmer Fudd. I think I will pass on picking up the phone until I can talk without sounding like a cartoon character. You should have seen the bank teller at the drive through window. First he looked at my license and then at my bald head. Then he asked me a question and I had to talk. I'm sure he's going to be talking about me over his lunch today - the crazy bald lady doing the Elmer Fudd / Daffy Duck impression. Well, if you work at a bank on Fridays, you probably need a good laugh over lunch. Glad to provide it.
posted by Karen Weber Friday, August 4, 2000