Sunday, February 04, 2001

Last Friday, I had my 3 month follow-up with my oncologist. The days leading up to these appointments are like being in suspended animation, waiting for a verdict, holding your breath for days on end. I called on Wednesday to find out the results of the tumor marker tests. They couldn't find them and asked me to call them back on Thursday. While I had them on the phone, I asked if there was any progress being made on getting my PET scan scheduled. The gal started telling me how complicated it was to get one of these set up, but then she finally admitted that she hadn't even started on it yet. I wasn't very happy, but sometimes that's how it goes.

On Thursday I called back to see if they'd found the tumor markers. A long hold while they looked, then they told me they didn't have them. Give us a few minutes to call the lab, they asked, and then we'll call you with the results. When the gal called back, she said that the lab hadn't run any markers. Now I really wasn't happy. I said to her, "I have a lesion on my liver. The doctor's plan is to wait and watch. If we don't get a scan scheduled and we don't run markers, then we aren't watching, are we? We are just waiting. What exactly are we waiting for????" And she laughed and said that was a very good question and that she was sure the doctor would be asking the same question but in stronger terms. I didn't sleep very well Thursday night.

Friday Rick met me at home and we went to the appointment together. The doctor apologized for the lack of markers and said that they would draw more blood from me after the appointment and get the markers done ASAP. We went over the bloodwork that the lab did manage to run, which showed that my white cells are just 3.1 and my hemoglobin, hematocrit, and RBCs are all low. I'm sure the second is from surgery, but I'm not sure why the white count is low. Then the doctor asked when I would be having the PET scan. I told him that his office staff hadn't even started getting it set up. Now it got funny. You have to picture a Tawainese doctor, speaking broken English -- the gist of what he said is that nearly every patient he'd seen that day had the same story. A test not set up or labs not done correctly. He wasn't very happy. (He apparently conveyed that to his staff, because after the appointment, all the legwork had been done for setting up the test. We just have to wait for approval from the review board at Good Sam where the only PET scan machine in the area is located. We should hear something early next week.)

Then I had some questions. Mostly, they were questions that the doctor couldn't answer. I was trying to get a handle on how I could have a tumor that is supposedly so aggressive because it's her2/neu+++ but was so very slow growing and hadn't gone into the lymph nodes. I also wanted to know if any possible mets would also be as slow growing as the original tumor. Again, the concern is with the liver and how much something could have grown in the 3 months since the last scan. No answers. It's pretty much impossible to tell if I am having any pain in the area -- too soon after the gallbladder surgery. I think I have some discomfort up under the rib where the thingie is, but at this point I'm probably just imagining it.

Anyway, next the oncologist did a physical exam. The funniest part of this was when he was pounding on my spine to see if I had any bone pain. He said, "Does that hurt?" And I said, "No." And he said, "Not hitting hard enough, I guess."

My visit with the oncologist ended on a sour note. I was trying to get a prescription for a PT eval for lymphedema. He told me that I don't have lymphedema, mostly looking at my lower arm and hand. I told him it was in my breast, side and back. I described the pain I have. He told me that was pain from the nerve being cut during the axillary dissection. I told him that I am very familiar with nerve pain, having a 14" incision on my right knee. He offered me pain meds. I refused them, and asked for the script. He did give me one, but only because I cried about it, I think.

Anyway, then I went and had blood drawn for the markers. I'm not at all sure how long it will take to get those back. I'm pretty frustrated about that. I had my stress level under control going into Friday, but I feel all washed out now. The answers I wanted to get - normal tumor markers, scan results - I'm still waiting for. I spent most of Friday night crying. Not sad or depressed. Just letting out stress. I've been weepy on and off since Friday, but was on the worship team for church today. I was weepy during rehearsal before the service, but then I released my tears to God, and he kept me close to him during the service. I spent the afternoon at a baby shower for a member of our band. I'm feeling more emotionally grounded tonight. Finally.
posted by Karen Weber Sunday, February 04, 2001

Monday, February 05, 2001

Got a call from the oncologist this morning - my tumor markers are normal! In fact, they are lower than they have ever been. Phew! With that and the normal alkaline phosphatase we've got over a 90% chance that that thing in my liver is nothing. I can breath again!

I forgot to mention that during the discussion of lymphedema with the oncologist, he said maybe the pain was from weakness. I said I didn't think so, but he proceeded to manual muscle test my biceps and triceps. After I pushed and pulled him around the room, he admitted the pain was probably not from weakness.

I also forgot to mention the other reason I was upset on Friday after my appointment. As I was setting up my appointment for the next 3 month follow-up, the front office gal told me that she didn't know which doctor to set me up with because my oncologist won't be in town then. I asked if he was going on a long vacation? No. Speaking at a conference? No. He's moving to Florida. He was supposed to tell me, but I guess it flew his mind when we had our disagreement about the pain I'm having. So.... now I need to find another oncologist, again. Sigh.

Buy self-improvement tapes and kingoftapes.com will donate money toward breast cancer research

Tamoxifen and Cardiac Risk Factors in Healthy Women: Suggestion of an Anti-inflammatory Effect - this seems to contradict another study released recently.

OncoLink: "Chemotherapy: What You Need to Know" - excellent resource!

Belly Fat May Increase Risk of Dying from Breast Cancer - review of current research from BreastLink. (Unfortunately, taking tamoxifen changes a woman's metabolism so that fat is deposited primarily in the belly instead of on the hips and legs.)

Micrometastases/Occult Metastases - What Does it Mean?
posted by Karen Weber Monday, February 05, 2001

Wednesday, February 07, 2001

Paclitaxel derivative appears safe at levels 150% higher than standard paclitaxel dose

Interesting photo at Oncolink - very artistic examination of baldness.

Toward Mechanism-Based Cancer Care

Molecular biology looks beyond mammograms
posted by Karen Weber Wednesday, February 07, 2001

Thursday, February 08, 2001

Oral Anticancer Drug (Xeloda) Provides New Promise for Advanced Breast Cancer Patients

World Review by Leading Researchers Reports Progress of Hyperthermic Oncology

Partnering To Find New Ways Of Fighting Breast Cancer

Young Survival Coalition - Young Women United Against Breast Cancer
posted by Karen Weber Thursday, February 08, 2001

Next - February 11, 2001