My Breast Cancer Journal
April 30 - May 7
Monday, May 1, 2000
Still having swelling in the breast. It's not like an arm that you can elevate and exercise. I'm beginning to wonder if this is a permanent condition. I have a very soft bra that my mom lent me that is the only comfortable thing I own right now. By yesterday evening, even it was too tight. Then, when I went to bed, I found that I was extremely dizzy when I laid down. Upright, no dizziness. Very odd. If I stayed in one place long enough, it settled down, but any movement and it started back up again. This morning, I am dizzy in every position. I think it's a sinus thing. I have to admit, though, that I had some irrational fears about the dizziness last night. My grandfather died of cancer, and the symptoms he had when it metastasized to his brain were dizziness and double vision. Even though I know I don't have brain mets, it is really hard not to ascribe every little thing to the cancer. I have to constantly fight the temptation to turn every little twinge into a symptom.I found a place online that specializes in post-breast surgery bras and ordered a couple more bras like this soft one of my mother's. Rhino sent me another site that has something called a softie camisole. They do fittings by phone, and if I can ever get myself off this merry-go-round, I'll call them. Thanks, Beck!
No word yet on the second opinion. I'm going to call the lab this morning and see if they've heard anything yet.
posted by Karen Weber Monday, May 1, 2000
Wednesday, May 3, 2000
We are still waiting on the second opinion. Time is really starting to drag. Doubt is creeping into my mind. What is taking so long? Can they not agree? It's hard to get rid of these thoughts. This morning I had a dental appointment. At the beginning of every appointment, they ask if there's been any significant change in health. For some reason today that question started the tears. I haven't cried much lately and have felt pretty under control. But I think the waiting is more stressful than I've been willing to admit. I'd rather be doing something. Waiting is the worst.I also didn't sleep well last night. The swelling in the breast keeps getting worse. Even the loose bra is getting tight now. Yesterday when I got out of bed, my breast was purple. That's not something you want to wake up to. After my knee surgeries, my leg would turn purple for a while whenever I stood up. It scared me at first (I was 15, so it wasn't hard), but then I realized it was going to do that for a while and then it would gradually get better. At swim meets though people who didn't know me did double takes and asked about it. So anyway, I realized that by sleeping on my other side, it's placing my breast into a dependent position and blood is pooling in it. So now I can't sleep on either side or my stomach. I've got to sleep on my back. I've never been able to sleep on my back without medication. For one thing, that position tends to attract cats. I spent a lot of last night worrying whether Spookie was going to jump up and land on my arm or breast like she sometimes does. (That myth about cats all being graceful creatures is just that - a myth. We have a couple that are severely lacking in the grace department.) On my side, with my arms folded across my chest, I feel safe. On my back, I feel exposed. Rick joked this morning about installing an invisible fence around the bed and I said I need force field. The other problem with sleeping on the back is that more of the skin surface is in contact with something. During a hot flash, that's brutal. I woke up this morning on wet sheets. On my way back from the dentist, I stopped at the store and picked up 5 more of the blue ice packs. I guess I'll start keeping them next to the bed in a cooler. The one I had last night gave up the ghost around 1 am and that's when the sweating started. So anyway, I didn't sleep well last night what with worrying about cats, sleeping in an unusual position, and exerting so much energy sweating. At any rate, the breast wasn't purple when I woke up this morning, which made it worth the trouble I guess. The massage therapist is coming over today so I hope she can open up the flow of lymph for me and show me how to do it myself.
posted by Karen Weber Wednesday, May 3, 2000
Thursday, May 4, 2000
The massage therapist really did help with the swelling. And she showed me how to handle the manual lymphatic drainage in the areas I can reach. She taught Rick how to do the back and side where I can't. I have a lot of swelling in my side below my armpit and it extends around onto my back. Now that I'm sleeping on my back, I expect that will get worse.I spent today being a phone warrior. They made the mistake of admitting to me at about 8:30 am that the results of the second opinion came in earlier this week. Apparently they put the report in my surgeon's box at the hospital, but he's on vacation so it's just been sitting there. I talked to people at the lab several times today. Each time they promised to fax me the report. They never did. It's very infuriating to know that something so important to you is treated so cavalierly by the people who are supposed to be taking care of you medically. Finally, at about 4:30pm, the receptionist at my surgeon's office said that she would go to the hospital herself and pick up the report from his box. Bless her! So I have the report in hand now. I said I'd rather see a bad report than keep waiting. Unfortunately, that's exactly what I got.
The report is very explicit about the criteria for medullary carcinoma that are currently accepted and the lack of those characteristics in my tissue. This is what I feared when I asked the pathologist what set of criteria she used to come to her diagnosis and she couldn't tell me. (For the record, the research by Ridolfi published in 1977 is the gold standard. If your pathologist is using a different set, especially the Pederson criteria, GET A SECOND OPINION.) If nothing else, I'm hoping that the way this report is worded will get this pathology department looking more closely at their diagnostic standards.
OK, the important part of the report reads: "...the behavior of so-called atypical medullary carcinoma is not significantly different from that of ordinary infiltrating ductal carcinoma." For this reason, they never use that terminology. Instead, they label it, as they did mine, Invasive Ductal Carcinoma with medullary features.
So, what does this mean? It means that this beastie is a particularly nasty beastie. It has designs on my life. We are going to have to go at it with everything we've got. Chemotherapy, radiation therapy, tamoxifen, maybe Herceptin (or maybe not). It may mean that they do more tests just to be sure that there is no spread. It certainly means that this is going to be a long, long summer for me. I am having a pity party tonight, letting the tears flow, getting that part over with. Starting tomorrow, we are going into the serious beastie busting business.
posted by Karen Weber Thursday, May 4, 2000
Chemotherapy and You. A Guide to Self-Help During Cancer Treatment
posted by Karen Weber Thursday, May 4, 2000
Friday, May 5, 2000
Here is a good tutorial on estrogen receptors and tamoxifen from the National Cancer Institute..
posted by Karen Weber Friday, May 5, 2000
Saturday, May 6, 2000
Yesterday mom and dad came down. They brought birthday presents. Mom got a couple of beautiful silver and turquoise barrettes. She said she almost took them back because she was afraid they would upset me. Well, I do plan on having hair again in the future, even if I lose it this summer. Who knows? I may enjoy being bald so much in the Phoenix heat that I'll decide to make summer baldness a tradition. But I would want hair during the brutally cold winters here in Phoenix. It can actually be as low as mid-50s here during the day in January. You wouldn't want to brave that without hair :)Mom brought some of her old bras, and several of them fit! The swelling has gone down quite a bit since we started doing the manual drainage and I changed my sleep position. I can now sleep on my side again as long as I hug a pillow to keep the breast from hanging down. It's hot, but it's more comfortable for me.
We went out for dinner to a local Thai restaurant where we stuffed ourselves on wonderful and spicy food. I know lots of people get mouth sores from chemo. Plus the nausea. I was glad to get some good spicy stuff in before anything like that happens to me. I don't know what I'm going to do without spicy food.
Then we went over to the new Berean Christian store in Mesa where my band played a concert. I do backup vocals. It was fun - but really hot! The coffeeshop there provided free drinks for the band. The cold water was nice, but it would have been nicer just to climb into the cooler for a few minutes. How did women survive hot flashes before the advent of air conditioning? Or ice? I'm obviously not pioneer stock because it seems impossible to me. Mom says that I'm not having typical hot flashes. She says those are really flashes - very fast then over. That is definitely not what I'm experiencing. I think it must have to do with going off hormones cold turkey. She has been brainstorming on how to sew something so that I can have a blue ice pack against me without necessarily broadcasting it to the world. This morning she came up with the idea of sewing pockets made out of wash clothes into a tank top. One at the small of my back would be perfect.
posted by Karen Weber Saturday, May 6, 2000