Sunday, October 15, 2000
The drainage from the burns is increasing every day. It doesn't smell good, so I'm going to get in to see my GP about it. Any time you have a wound in an area that's swollen, there is potential for a nasty infection. I have a feeling I should be on some oral antibiotics. Also, an additional area about the size of a quarter broke open over night. This is not in the area affected by the abrasion or pads from the echocardiogram, so this is the first real bad burn strictly from the radiation. I have 7 more regular treatments to go, then the 6 boost.I have to tell you something funny that happened last night. Rick and I went out to eat, and we had to wait for a table at the restaurant. So we were just sitting there waiting, watching people come out with their leftovers, etc. A very tall woman and her husband came out. They were very, very dressed up. The woman in a dress and hose (no one in their right mind wears hose in Phoenix during the summer months - and yes, October is really still a summer month here) and the husband in a suit and tie. I thought to myself, here we are in T-shirts and shorts. Isn't it nice to see someone making a Saturday night meal out special. Then the woman made eye contact with me. I was wearing my hat, and I had a little pink ribbon pin on the collar of my T-shirt. It's the first time, I thought, anyone's really stared at me. Maybe she's staring at me because I'm not dressed up, although to be fair, I think they were the only people in the place who were dressed up. She continued to stare at me as she walked towards me. When she got to me, she bent down and gave me a big hug. I thought, well, maybe she's been through breast cancer, too. Then she said, "You shouldn't wear a shirt like that if you don't mean it." I looked down, because I had completely forgotten what shirt I had on. Then I laughed and said, "Oh, I do mean it! Thanks for the hug." The shirt has hearts on it and says "Squeeze Me. Hug Me" all over it. I am learning that if you open yourself, God sends wonderful things your way. Wallabies, old friends, new friends, and hugs.
Just a quick note: I had a lot of pain in the armpit and breast during church this morning, so I called the radiation oncologist on call today. He called in a script for Silvadene. It's a great burn treatment. I had a second degree burn on my forearm back in the 80s where I dropped a hot pan on it. You cannot even see the scar tissue. So I spent most of this afternoon stripped to the waist, lying with my arm over my head under the ceiling fan. Rick was very attentive, although he stopped short of feeding me grapes or calling in cute slave boys to fan me. They will culture the burn tomorrow to see if it is infected (it sure smells like it is) and then may or may not give me oral antibiotics.
posted by Karen Weber Sunday, October 15, 2000
Monday, October 16, 2000
I've posted the pictures we took of my hair yesterday. Big difference from last week to this week. My pastor, who hadn't seen me for 2 weeks (we skipped church last week to do the Race for the Cure), was mighty impressed and asked for permission to feel my hair.Good news and bad news today. The bad news first. The burns were too bad to have a treatment today. I had a lot of pain trying to wash the silvadene off this morning in the shower. Then I couldn't put anything on it until after radiation treatment so the pain just continued. Driving my jeep over to radiation really hurt - I don't have power steering and every little bump really hurt. Then they wanted me to see the PA before treating me, and she wasn't in until later than my normal treatment, so I sat there, very still waiting. When she finally saw me, the soft piece of cotton cloth I had on the burn was adhered to it. Removing it from raw nerve endings wasn't pleasant. She asked me to call tomorrow morning to see what the doctor wants to do about the burns.
The good news is that we got the results of the tumor markers back, and they are all within normal range! Yee haw!
posted by Karen Weber Monday, October 16, 2000
Tuesday, October 17, 2000
I was to call the radiation oncologist this morning before noon to see if I would get a treatment today. I called before I showered, and got the news that I'm taking today off as well. I'm to go in tomorrow at my regular time, planning to have a treatment, but I'll see the doctor first for my weekly check and she'll decide. I'm really torn about this. On one hand, my skin needs time to heal. On the other hand, I really hate delays because I want to get this done!I am about as bored as a person can be. All day lying on my back so that the skin under my breast can heal is not my idea of a good time. I did get one thing done that I had been putting off -- I called the IRS about some letters they sent me regarding 941 payments. (Rhino, I can hear you laughing, so just stop!) I figured that lying on my back wasn't boring enough, so I might as well listen to canned music and perky announcements. There were a few dicey moments as I tried to navigate through the voice mail menu, but finally I got on hold for the right people and then I just sat here for 2 1/2 hours while I waited for someone to decide they had time to talk to me. I'm not sure, but I think I now know what a sensory deprivation chamber would be like except that I hear some people actually enjoy that experience. Anyway, the wait was worthwhile because I got a very helpful woman on the phone who took care of all my problems. Hard to believe? You bet, but apparently there is at least one competent and kind person working for the IRS and I got her on the phone. Made the wait and the boredom almost worthwhile.
My burns are feeling less painful tonight, but Rick thinks that more area is open. I think that some dead skin just peeled away on one of the dressings. There was a lot of dead skin around the burns that isn't there anymore, so I'm assuming that the burn isn't really worse. It's just more exposed. In PT we call that debriding - taking off the dead material to expose the living tissue. It's essential to the healing process. Not sure about that with radiation treatments though. I'll see the radiation oncologist tomorrow before going in for a treatment, so we'll see what she thinks. The PA recommended something called Domeboro to me yesterday. She said it would really sting on the open areas, so I might not want to use it there. Today I used it on the deep red area in my armpit and over my nipple/areola. It really decreased the redness and irritation in that area. So when Rick came home and could help me, I braved putting a dilute soak on the open area. It didn't sting at all and took some of the itchiness away. I'll look forward to seeing how the burn looks tomorrow. This morning, there was a huge amount of green-yellow drainage on the dressings. I hope maybe there'll be less tomorrow, but that's probably not very realistic.
posted by Karen Weber Tuesday, October 17, 2000
Wednesday, October 18, 2000
Well, I took a pain pill last night so that I could sleep. It wore off at about 3 am, and I couldn't get back to sleep. Should have gotten up to take another one, but I was too tired. So I just laid there being miserable. I saw the radiation oncologist this afternoon. She was very impressed with how the burns evolved from last Wednesday to today, so much so that she gave me the whole week off. I asked if we could do the boost now while the skin below the breast is healing, and she gave me "the look." Then she said, yes, we could do that, but we aren't going to because the skin around your incision isn't looking particularly good either. So, there is nothing to do but lay here on my back staring at the ceiling fan and be bored. Someday this week, the concrete guys will show up to pour the pool. That will be my big excitement. This is so frustrating -- I was so close to being done. Just 13 more treatments. I had the numbers counting down in my datebook, but now I'll have to wait to see when I can start counting again. Sigh!We also got bad news about my mom this week. She's had high blood pressure for months now, and it hasn't responded to medication. She came down last week for a sleep apnea test -- I already knew what they would find, because I watched her nap during the days she stayed with me after chemo. The official test confirmed it. Because she stops breathing during sleep, she isn't getting enough oxygen, so the heart beats faster, and that makes her need more oxygen, and it becomes a vicious cycle. She is having a follow-up test tomorrow night to see how she responds to sleeping with a special mask that will help keep her airway open. So maybe this was really good news -- we know why the BP is high now, and maybe it can be treated now.
posted by Karen Weber Wednesday, October 18, 2000
Thursday, October 19, 2000
Single cause of breast cancer still not identified - high fat diet contributes, but doesn't cause breast cancer. I'm glad to see that someone is doing research on nutrition and breast cancer.California Breast Cancer License - California residents can get a special license plate that raises awareness about breast cancer while generating funds for the non-profit organization Cure Breast Cancer, Inc.
Tumor Markers - ASCO guidelines for the use of various tumor markers for determining prognosis, recurrence, and treatment options.
What Every Woman Should Know About Managing Breast Cancer Treatment - good information for follow-up treatment, including a list of signs and symptoms of recurrence.
Follow-up after treatment for breast cancer [Supplement, CMAJ - Feb. 10, 1998]
Still hanging out with the burns. There are areas that appear to be healing today, and even better, there were no new broken down areas that I could see. I'll have Rick take a look tonight to confirm that. Last night the silvadene started making me itch really badly, so today I am trying the Vigilon again. The radiation oncologist said it might work better for me anyway. And when it's on, I can sit up and get some work done. Much, much more comfortable, but we'll wait until Rick comes home and takes a look for the final word. I have to run to Wal-Mart tomorrow to pick up another box.
Our pool flunked the city inspection. Apparently there were some grounding problems with the electrical work, so the electrician was here for several hours today (in the rain) re-doing the work. He said the inspector would be out again tomorrow. The inspector rang the door bell this morning, and I was, of course, not really dressed. Thank goodness Nichol, my assistant, was here. She told him to go ahead and go to the back yard. Maybe I'll put a sign on the door tomorrow.
posted by Karen Weber Thursday, October 19, 2000
Friday, October 20, 2000
The burns looked better last night, and again this morning. Areas that were threatening to break down have nice, new skin on them. The area that is raw and painful is getting smaller. There is hardly any discharge on the Vigilon now, so the Silvadene seems to have taken care of whatever infection was there.I talked to a gal who I met during chemotherapy at my old oncologist's office. She has also switched oncologists, and when she called our surgeon's office to tell them about the change, his nurse told her that they have had so many complaints about that oncologist that the surgeon is reconsidering whether to refer anyone to him. Hooray! That was my primary goal. My secondary goal is to get what he did to my heart on the public record by filing a complaint with the state board. I have the name of a lawyer who does nothing but medical malpractice, is very respected by other attorneys, and, get this, is married to a doctor! I called his office yesterday, but everyone was out so I am waiting for a call back.
Treatment of Vaginal Dryness in Women with Breast Cancer - OK, we've all seen the commercials: a young woman with an embarrassingly full head of hair wandering meditatively down a beach as the announcer talks about vaginal dryness. I don't know about you, but I always thought, "Yeah, right! That stuff's for women in their 90s." Well, thanks to the miracle of tamoxifen, now you, too, can have vaginal dryness at any age! I also remember thinking, "Come on! How uncomfortable can that be?" Well, let me tell you, it can be pretty darn uncomfortable. So, as long as I was out picking up the Vigilon, I got some Replens as well. Hope it works -- and quickly!
Survivor Recounts the Epiphany that Came with her Breast Cancer Experience
Double whammy for breast cancer - new scanning technology can detect bone metastases as small as 10m cells.
I talked to the lawyer this afternoon. He's a very nice man. I told him upfront that I'm not a vengeful person and I'm not really looking to file a lawsuit, but that I do want advice on filing a complaint with the state medical board. He told me in return that he talks more people out of lawsuits than he accepts as clients. He also thanked me for not being the litigious type. So with that out of the way, he let me tell him the story. I gave him the bare bones version, and when I got done, he told me several things. First, he said that as long as I was telling him the truth, it was clearly medical malpractice. Second, he said that because at this time the heart damage is not affecting my life that it would not be cost-effective to file a lawsuit. Third, he said that I have 2 years from the time I knew or should have known about the medical malpractice to file. So if my heart should take a turn for the worse in the next year, I will still have time to file. Since most cases of heart failure from adriamycin toxicity happens in the first year, that's reassuring. Finally, he said that because of my grasp of the facts and my background as a medical editor, I will be able to handle my own filing with the state board. He said "Just put down in a letter exactly what you just told me, edit it a couple of times, and you're set to go." He said that if I want him to read over the letter when I am finished with it, he'd be happy to offer me that service, but he really didn't think it was necessary. He also cautioned me not to get my hopes up about the board doing anything. But he said he knows it is important for me to do whatever is necessary to feel that I've done what I can to spare future patients. He was really a kind man, didn't rush me, and shared with me that his younger sister just had her first chemotherapy for leukemia a couple weeks ago. She almost died from it -- was in ICU on a respirator for a while she was so sick. And he was nice enough to laugh at my stale joke about how mad my body is that I never did any fun recreational drugs, instead preferring to wait for the really nasty stuff. No one's laughed at that one for months! So overall, I feel like I talked to an ethical lawyer who gave me good advice. I'll get to work on that letter to the board next week.
posted by Karen Weber Friday, October 20, 2000
Saturday, October 21, 2000
We haven't done much of anything today. I downloaded some graphics to use to print up thank you cards for the nice folks who sponsored me in the Race for the Cure. Then I spent a long time reading about cardiomyopathy. I was surprised to see that I fall in Class I Congestive Heart Failure. This class has no symptoms, but a moderate to severe decrease in left ventricle function (ejection fraction 35-40% - mine is 40%). This came as a shock to me because I was told that 40% was on the low end of mild cardiomyopathy and that I wasn't in heart failure. It seems like I come to terms with one thing, and the next thing I know it's something new. I've bookmarked the American Heart Association on this. If anyone is just dying to read a really long, intensely technical piece on this, I'll send you the URL. Then I found Jon's Place, a support place for people with cardiomyopathy and congestive heart failure. Jon has amassed an amazing amount of very helpful material. His own heart damage is from the same drug as mine. His ejection fraction was down to 13%, but now is up to 40%. He says he actually doesn't feel any better, though. Anyway, while I was there I stopped in to the chat room and met a couple of very nice ladies. One of them is an 18 year survivor of breast cancer, too! She really encouraged me about my heart, and told me to believe that it can get better. I am having a lot of tiredness again in my chest. I don't know if it's the radiation or the heart problem. I've spent all week lying on my back trying to heal these burns, and my heart has felt like I've been loading bales of hay all day. This nice woman told me it could be the radiation, and she also said that the ACE inhibitor I'm on is given more for the long-term effects than for helping relieve symptoms now. So I guess I'll hold off on judging whether how I'm feeling has to do with my heart or the radiation until I finish the rads and give my body time to recover.Rick and I went for a short walk today and got caught in a huge thunderstorm. We were completely soaked by the time we got home. It's still raining hours later. This is so un-Arizona-like; I love it!
posted by Karen Weber Saturday, October 21, 2000