Sunday, August 6, 2000
Went to the Mercury game yesterday. Couldn't yell much or jump up and down much, but enjoyed the game nevertheless. It is really touching to have the people who sit around you and the usher in the section tell you how much they missed you at the last game. We gave our tickets to some teenagers who v volunteer at a local no-kill shelter. They weren't in our seats for the game, but they have friends elsewhere in the arena and may have gone to sit with them. The Merc lost yesterday in a preview of what may be a very short post-season run. There were LA fans sitting right behind us who flew in for the game. I had fun talking to them. Women are so naturally supportive. They never looked twice at my bald head or asked why I was talking like Daffy / Elmer. They just enjoyed the game and talking with me. After the game, Rick and I went out for Mexican food. The red pepper numbs the tongue enough to allow me to chew with quite a bit less pain. Still, the refried black beans and the fideo were the best parts of the meal. I brought most of the pork tenderloin adobado home to eat later. It was very tasty, but just too much work. Once home, we watched a couple movies, and I really enjoyed Ma and Pa Kettle at Home. I've never seen any of the Kettle pictures, and it was really fun.
posted by Karen Weber Sunday, August 6, 2000
Tuesday, August 8, 2000
I am BUSHED today. Yesterday I sat up at my desk for several hours and worked. Then I left for a meeting and an early Mercury game. Out to dinner after. I've still got the sores on the tip and side of my tongue, so eating is challenging. I ordered fish and chips, asked for them to undercook the coating so that it wasn't too crispy. Pulled off the pieces that were too crispy, soaked the rest in malt vinegar to soften it. Mixed tabasco sauce into the the tartar sauce to get the red pepper counter-irritant thing going and enjoyed dinner. Takes me about three times as long as normal to eat and I have to hold a napkin in front of my mouth since I do most of my chewing with an open mouth. The waiter was really helpful. Got home with blisters on both feet and feeling pretty tired.The Paxil does seem to be moderating my hot flashes. I have fewer instances that I would call a real hot flash. You can tell if I'm flashing by the temperature of my scalp. I radiate heat from the top of my head at such a rate, it seems like it should be glowing. Despite the decrease in hot flashes, I am still experiencing what I call trouble in regulating my body temperature. For instance, when I lie down at night in the waterbed, the warmth of the bed causes me to heat up. It's not a hot flash. My scalp stays fairly cool. I'm just uncomfortably warm all over. I used to have a hot flash when I got in the waterbed, so I do think the Paxil is doing something. I'd like to figure out how to get the rest of the way to having a stable body temp. I also get overheated with exercise, with working too long with my laptop (even though it's on a table and off my lap), and anything that is warm. It takes me a long time to cool down. We walked a couple blocks last night, for instance, to get to the Mercury game. It was probably about 105 degrees. Most people cool down pretty rapidly once inside the air conditioned arena. I was still hot at half time. I read an article yesterday, shared by one of the FIN angels, that suggested trying deep breathing for hot flashes. I'm going to try that for whatever it is I'm experiencing now. I also decided that a quick, cool shower before going to bed might be helpful. Tried it last night. I did get warm once in bed, but less so and it subsided much more quickly. I think I'm on the right track.
Yesterday was the first day that I had a problem with eyes watering that some people report during chemo. They are still watering today. It's an odd feeling. They feel dry and gritty at the same time that they are dripping tears. I'm told drops will help, so I'm going to try that today.
posted by Karen Weber Tuesday, August 8, 2000
Wednesday, August 9, 2000
CA27.29 Breast Cancer Antigen - this is the other blood marker that my oncologist has been routinely measuring during treatment. He says that values have varied widely for me, but he didn't show me what he meant by that. I have a blood draw scheduled for tomorrow and am going to ask the nurse to see the previous lab reports. Upper value for normal on this test is: 37.7 U/mL.Tumor Markers - a scholarly article on the various markers used for different types of cancer. It gives a good summary of their effectiveness and use.
posted by Karen Weber Wednesday, August 9, 2000
Thursday, August 10, 2000
I spent a lot of time yesterday reading on anemia. What I learned reveals the reason for my fatigue. The red blood cells live longer than white blood cells. So while you see an almost immediate drop off in the white blood cells following chemo (7-10 days), it will take about 3 months after your first chemo to see the drop off in the red blood cells, hemoglobin and hematocrit. I am still a couple weeks out from that 3 month mark, having had my first chemo on May 23rd. So, I am already anemic and it seems to me that we are only going to see that get worse over the next couple weeks. The even worse news is that it also takes longer for the red blood cell count to recover as compared to the white blood cell count - 120 days if left on its own with no more chemos and no treatment to stimulate the bone marrow. We are, of course, doing more chemos. And I haven't heard anyone said that they were going to treat my anemia yet. The nurse let me look at my counts on the chart. I started out on the low end of normal - no doubt the two surgeries helped that count start low - but held steady there until last week's blood draw, when it dropped. The nurse confirmed that we wouldn't expect to see it improve with today's blood draw, but that the doctor wanted to wait and see if the counts were going to drop further. They'll have the results by tomorrow morning and I can call at noon to find out if we are doing the 4th chemo next Tuesday or not.I have all the symptoms of anemia, especially the dizziness. My blood pressure is usually low, so I tend to be a little dizzy on rising anyway. Well, lately I'm dizzy all the time, but especially if I bend over to pick something up or get up too quickly. I am also still very tired. I'm not sure how low the oncologist lets the counts get before he treats the anemia. I would have asked the nurse today, but the regular one was on vacation again, and I wasn't sure the sub would know.
I forgot to ask to look at the CA27.29 values. It was just too darned early in the morning for my brain to remember. When I started chemo, I had read a lot of things that said plan to do things in the morning while your energy is still high. You'll be too tired in the afternoons and evenings to get much done. It is just the opposite for me. It takes me forever to wake my brain up in the mornings. It's almost noon before I am really awake. I start to be productive around 2 pm. I have a feeling that the people writing that advice are "early to bed, early to rise" people normally. I think that the chemo fatigue just amplifies your normal pattern of waking and sleeping. I used to start to be productive around 10 am. It makes sense to me now that it would shift later with the fatigue, not earlier.
BATTLING CANCER (Hibbing, Minnesota) - you have to read this article about one of the angels in my online support group. Tina, I'm so proud of you!
posted by Karen Weber Thursday, August 10, 2000
Friday, August 11, 2000
Well, unaccountably, my counts are up somewhat, so we are going to do the chemo on Tuesday. I am still mildly anemic. I have been reading about the treatment of anemia in chemotherapy. It's somewhat controversial. Before the advent of Procrit, oncologists only treated anemia if it became severe because of the potential problems with blood transfusions. Now that Procrit is available, many oncologists feel that it is important for quality of life issues to treat moderate and even mild anemia. My onc may not be in that group, as he doesn't seem concerned about it. I've discussed with several people the fact that he seems to treat an overwhelming number of geriatric patients. I believe that expectations for energy level and symptom management may be very different for younger patients than they are for geriatric patients. And I believe that he may not be taking that into consideration. So I may need to talk with him about that very bluntly.Let me give you an example. I had chemotherapy with a nice older gentleman in June. It was his first treatment. He didn't know what kind of cancer he had, he didn't know what stage his cancer was in, he didn't know what his prognosis was, he didn't know how many chemo treatments he was going to get, how often or with what drugs. He didn't ask. I have sat and talked with him a couple times since then. We've both had 2 chemos since we met. The first time we talked he told me that having chemo was no big deal, he really hadn't noticed any change in energy level and was still maintaining a normal level of activity. I felt like such a wimp talking to him. The second time I talked to him, he said the same thing. I don't know why, but I asked him exactly how much he could do before getting tired. Well, it turns out that he can basically do about 1 hour of his usual activities a day and that's it. He spends the rest of the day sleeping or laying on the couch. This is no big deal to him. That would be a HUGE deal to me. I'm perturbed if I can only get 3-4 hours of normal activity in during the day. I'd prefer to have the energy to get at least 5-6. So when he was saying "no big deal" it had no relationship to my feeling like a wimp for not being able to do much. If my oncologist is used to people who are willing to settle for an hour or two of normal activity during the day, I can see why he thinks I'm having no problem with fatigue because he hears me telling him I'm getting in 3-4 hours a day. So I need to be more clear to him that, as a young person, I expect more and I want my treatment plan to include a provision for that.
BTW, that nice older gentleman still has no idea about anything to do with his cancer or his treatment. He also takes the Neupogen shots, but he doesn't know what they are or why he takes them. I don't really understand that, but I guess everyone has their own way of dealing with things.
posted by Karen Weber Friday, August 11, 2000