My Breast Cancer Journal
June 4 - 10
Sunday, June 4, 2000
I started feeling icky yesterday. My temp went up, my sinuses completely closed up so I couldn't breath. I have a sore on my tongue so it hurts to eat. My muscles are achy. A cold sore broke out on my lip, but I got that under control with some lip balm we have. I slept most of the night, but woke up more tired than when I went to bed. I put in a call to my doctor and am waiting for a call back. I sent Rick to church, but I am feeling too wimpy to go myself.
Just back from Urgent Care, where I was poked in places that I'd rather not mention. The doctor said the sinuses are very inflamed, and he gave me a prescription for an antibiotic and a super-powered decongestant. We dropped those scripts off at the pharmacy and Rick will go back to pick them up in a bit. Hopefully this will help the headache before it turns into something more than sinus.
The Urgent Care nurse just called to tell me that my white blood count is only about 1/3 of what it should be. This, of course, is an expected side effect of the chemotherapy. If the count doesn't come back up, the next treatment will be postponed. I see the oncologist on Tuesday, so I should know more then. The decongestant is loosening things up and allowing them to drain without drying me out. That relieved the headache, which I hope will mean a more restful sleep tonight.
posted by Karen Weber Sunday, June 4, 2000
Tuesday, June 6, 2000
Yesterday about mid-afternoon, I detected a second mouth sore. Since this one was not in a usual place for me, I went running off to the drugstore. The pharmacist gave me what must be the most vile compound on earth, a mouthwash that's supposedly peppermint-y. She warned me that it was going to "sting" wherever I had open sores and that it wasn't going to taste very good. I was to mix it with an equal part of hydrogen peroxide. Well, first off, not tasting good is an understatement. I think I'd rather gargle with tar. And secondly, from the number of spots that "stung" when I swished, I'd say I caught my mouth on the verge of a full outbreak. The good news is that they were all still very small and the one swishing seems to have killed them. The large, stress-related sore on the side of my tongue remains. It hurts to chew. It hurts to talk. It even hurts to drink fluids. I broke down this morning and slathered it with Anbesol. I can now drink without pain so I can keep my fluid intake up. I have an appointment with the oncologist this afternoon. Rick is going to meet me there. I've taken my book on "Chemotherapy and You" from the NIH and marked it up with questions to ask. The good news is that my temp is back down to normal and staying there most of the time. The bad news is that I've got an infected hangnail that has turned the tip of one of my fingers a frightening color. And that fatigue continues to be a major problem.
We had a really great visit with the oncologist. He is such a nice person, and very reassuring. I have a better idea when I should call him, and when I can go about treating myself. And what I can use in terms of over-the-counter meds. He also said that my white blood cell count, as low as it was on Sunday, was significantly higher than it had been when I had blood drawn on Thursday. So he said that he will be giving me the Neupogen for the rest of the AC treatments. Then we won't have to worry so much about infection and catching colds from people at church or at a Mercury game. It will also decrease the chances of the mouth sores and cold sores happening. The red blood cell count and platelet counts weren't affected by the chemo, so that was really good news. The chemo scheduled for the 13th will be on the 20th instead, which will give my mom more time to get home from my nephew's graduation in Michigan. And it will give me more time to get back on my feet before doing this again. He also said that he is going to give me samples of a bunch of different nausea drugs in hopes that we'll find something that works well for me. I went in there not really sure I could live through this again, much less 3 more times, and I came out feeling reassured that I'm going to get through this and live to tell jokes about it. Caesar has been giving me lessons on napping today. It is his contention that I would feel much better if I were more like a cat. That would mean sleeping about 22 hours a day I think. Seems excessive, but it works for him.
This is a really nice inspirational page that a friend of my mother's sent me: Harbour Lights. Nothing about cancer here, just about taking care of yourself and learning to relax. I need that!
posted by Karen Weber Tuesday, June 6, 2000
Wednesday, June 7, 2000
The big news this morning is that my hair has started to fall out - right on schedule. I'm trying to find out how fast this process will be. If it's going to be fairly fast, I'd like to just go ahead and get my head shaved right now. Seems like it would be less messy and less traumatic than doing it in small clumps.Well, on the advice of a woman from my online support group, I've had my head shaved. The stylist confirmed that once things start, it's easier to shave it close. Otherwise, it gets messy and looks awful. So I went and did it. Hobbles took a single close look at it, then went on with her usual behavior. The rest of the cats are sleeping. I'll be interested in seeing what Otello thinks about it. He always liked to sniff my hair.
Thursday, June 8, 2000
I got a lot of input on the head shaving from my support group. Many of them choose to shave their heads at the first sign of hair fall because it was empowering. That is how I felt. I made an active choice and did it, exercising my control. Some women said that they didn't shave and wished they had because it was messy just letting it fall out. Only one said to wait until it looked bad. I'm happy with my choice. I didn't think this would be hard. I'm not a vain person. But it was hard. I think because it was just one more thing in a string of things. Right now, while my white blood cell count is low, I feel like I'm being nibbled to death by ducks. My sinuses are inflamed, giving me a headache. I've got cold sores, I've got mouth sores, I've got an infected hang nail, I've got a yeast infection. etc, etc.... it's like it never ends. I'm spending all day taking care of this symptom or that. It would have been easier if the hair had waited until my strength was up a bit. Still, my stylist (who did the shaving for free) helped me put things in perspective by telling me about a young friend of her family's who is fighting a rare brain disorder and has now shaved her head twice. It took the tears right out of my eyes, because it reminded me that no matter what, it could always be worse.The problem that is causing me more concern is that I'm having trouble focusing with my eyes. Rick, who has had bad eyes his entire life, took no small amount of glee in pointing out that it was probably age, not the chemo, causing this. So now I know that my husband has been secretly waiting for years for the day when I would need reading glasses. Well! After asking the women on my group who have done the AC treatments, however, I know that it's the chemo. I was pretty sure it was. Sometimes I have to hold things closer to my face, sometimes further, and sometimes I can't get focused no matter where I put it. This mostly affects printed matter, but I have had days where I can't read clearly on the computer screen either. The good news is that everyone says that their vision went back to normal after the chemo was over, so whatever this is, it's not permanent. One gal told me that using artificial tears helped her, so I'll try that. I can't live without my books and crosswords!
Drug combination shows promise for advanced breast cancer. Information about buserelin in conjuction with tamoxifen.
Experimental blood test may signal breast cancer
Gene may help prevent spread of breast cancer
posted by Karen Weber Thursday, June 8, 2000
Saturday, June 10, 2000
I have to say that shaving one's head exposes you to the overhead A/C vents in a way I hadn't considered. My noggin is often cold now, and here I sit in the middle of a hot Arizona summer! Thursday evening I was expecting my assistant at about 7:30. I fully intended to greet her wearing a hat so as not to shock her. But she showed up early and I met her bareheaded. I shouldn't have worried. You know how college kids are. She broke into a big smile immediately and said that it looks really cool on me. The pizza delivery guy a little later wasn't quite that enthusiastic. In fact, he was very careful not to look at my head at all. I don't really care. This is how I look now, just like he had buck teeth. It's the luck of the draw, so I'm making the best of it. None of the cats seem to care about the bald head. Hobbles is the only one that I even saw notice it. So I guess my smell and the sound of my voice is more important to them. They know I'm the same old cuddly Karen.Lots of the nubbies fell off yesterday. It's like I had just had a haircut and the little trimmings were in my collar making my neck itch. So I spent extra time in the shower this morning encouraging hair to come off there. Quite a lot of it did, but I'm still shedding into my collar. Nevertheless, this is much easier than it would have been had I kept my hair. What a mess that would have been!
My white blood cell count must be on its way back up now. The infected hangnail that was totally nonresponsive to Epsom salt soaks, hydrogen peroxide and triple antibiotic ointment has healed itself overnight with no treatment whatsoever. The sore on my tongue is smaller today and less angry. My ear has stopped aching and I can breath without medication. I'm glad I'm not having chemo next week after all. It will be nice to have a week where I feel almost normal before going through this again. Thinking about doing this for 6 months is discouraging, but then I read in Dr. Susan Love's Breast Book that they used to do chemo for 2 years! So I'll be grateful for the 6 months and leave it at that. Speaking of gratitude, if you'll go to the Inspiration section, I put up a short page on contentment with some quotes and a prayer.
More than you ever wanted to know about Chemotherapy Principles. Written for patients and families.
Neupogen Package Insert. Gives information on how to store and inject Neupogen. This is what my doctor will give me to make sure my white blood cell count doesn't fall too low again.
posted by Karen Weber Saturday, June 10, 2000