Sunday, October 1, 2000
We had a wonderful guest for the weekend - a friend from my grade school days. We gabbed and got caught up. Then she was back to the Navajo lands where she spends her vacation working in the clinic.I had much less problem singing in church this week - less dizziness, I never felt short of breath, and I was less tired at the end of the service. Our new music minister, Theresa Coe, assigned me the tambourine for a couple of the songs. I was banging it against my leg as I sang. I joked that I'd probably have a bruise there. Sure enough, I do! I took a look at this week's blood test results on Friday. My platelets are a bit low, but nothing to worry about. Apparently, though, I shouldn't be banging things against my body.
posted by Karen Weber Sunday, October 1, 2000
Monday, October 2, 2000
Preventing Congestive Heart Failure - here's an article that describes the interventions that can delay progression from cardiomyopathy to CHF.I spoke too soon about feeling stronger every day. Today I am just beat. Got up and went to my women's Bible study, then I dropped off my records at the new oncologist's office. By that time, there really wasn't time to go home for lunch, so I dropped into a grocery store and picked up a sandwich, magazine, and some fruit. I went in to their deli area and sat in a booth to eat. It was about then that I realized I wasn't wearing a hat. I sort of laughed at myself thinking I'm hairy enough now to be out walking among strangers looking like ET. After a while, a man came up to me and asked if he had met me at the hospital. He had a pink ribbon on his employee badge. We hadn't ever met, but he sat down and shared with me the story of his wife's fight against breast cancer. I'm sorry to say that she didn't make it, but this wonderful man shared his pain and his encouragement with me. He was so kind, I hated to get up and go to my radiation appointment.
I had to report to the radiation therapist that I do have a burned area now on the lower edge of my breast. She looked and said, "Yep. It'll get worse." She also recommended that I stop wearing bras at this point, or use a cotton handkerchief against the burned area to keep the bra from rubbing the skin. I've got a lot of very loose-fitting Hawaiian shirts. I can wear an undershirt underneath one and go braless without being too obscene. I think.
posted by Karen Weber Monday, October 2, 2000
Tuesday, October 3, 2000
Adjuvant therapy seen to be reducing breast cancer recurrence
posted by Karen Weber Tuesday, October 3, 2000
Wednesday, October 4, 2000
We were offline most of yesterday, but I didn't have the energy to do much of anything anyway. I haven't gotten a single minute of work done this week, and that trend will continue today. I have an appointment with the new oncologist this morning, and from there I'll probably have lunch out with Rick then go to radiation. Wednesdays I have to stay late to see the radiation oncologist. By the time I get home, I'll be bushed. Sigh.I'm having a real struggle getting information about adriamycin-induced cardiomyopathy. I've talked to the American Cancer Society, the American Heart Association, and the National Library of Medicine so far. None of them could tell me anything that I hadn't already found out myself. I have several more places to call, but most of the research and informational materials places have is on prevention (which would have been nice) rather than on treatment once you are diagnosed. The ACE inhibitor, Enzyme Co-Q 10, and fish oils seem to be the best bet.
Well, we really enjoyed the new oncologist. He is very kind and compassionate. He went directly to the pertinent points in my record. He says that there is no need for the Taxol, as long as my cancer was correctly staged. So I am continuing to feel better about quitting chemotherapy without doing the Taxol. He was also concerned about the level of the CA27.29 tumor markers in my last blood test, so he is re-running that test, along with the CEA and CA15.3 (which I've never had run). He is also ordering a bone scan and chest/abdominal CT scan just to make sure there are no beasties setting up playgrounds in other areas of my body. I knew from talking to the woman who told me about him that he tends to be thorough and cautious, so I'm not jumping to any conclusions about having these tests. There's a Bible verse, sufficient unto the day the worries thereof... or something like that. I should probably look that up sometime. I just usually tell myself - sufficient unto the day... It means we'll worry if the test results aren't good. We won't waste time worrying until then, and in the meantime we'll expect the test results to be good.
We did have one funny thing happen during the appointment. The doctor was taking a medical history on me. He's Taiwanese and English is not his first language so you have to listen carefully. Here's how the conversation went:
Doctor: Do you smoke?
Karen: No.
Doctor: Drink?
Karen: No
Doctor: What do you do?
Karen: (confused and thinking he's wondering if I ever have any fun in my life) I mostly just pick on my husband to have fun.
Doctor: (laughing) My wife too! ..................But I meant what kind of work do you do.
Karen: (laughing too hard to really answer)
So I'm sure he thinks I am completely nuts now, but that's OK because I am! I have an excuse though. It's familial, right mom?Blood Test Can Detect Recurrent Breast Cancer - this explains about the CA 27.29 tumor marker that my new oncologist is concerned about. The normal level is 38 or below. My last reading was 55.
CA 15-3 as a Marker for Breast Cancer - this is a presentation from the 1996 ASCO meeting on the 15-3 tumor marker. I haven't had these markers drawn before.
The Carcinoembryonic Antigen (CEA): Past, Present, and Future - found this interesting information on the use of the CEA and 15.3 together to predict recurrence/metastases:
"In addition to its use in colorectal cancer, there is general agreement that the implementation of regular and sequential assays for plasma or serum CEA provides valuable information postoperatively concerning regression or progression of cancer growth in patients receiving chemotherapy and/or radiotherapy for breast cancer, lung cancer, or meningeal carcinomatosis. In breast cancer, studies utilizing serial determinations of serum CEA and CA 15-3 in combination for the postoperative follow-up of patients with primary or recurrent disease have demonstrated sensitivities ranging between 64% and 94% in the detection of metastases (214,215). In breast cancer patients who had been treated by either radical mastectomy or simple mastectomy plus local radiotherapy, the overall specificity using the combination of CEA and CA 15-3 was 99% in the detection of non-locoregional metastases. Interestingly, estrogen receptor (ER)-positive and progesterone receptor (PR)-positive tumors were associated with greater lead-times, higher levels of both tumor markers at the time of diagnosis of recurrence, and higher sensitivities in the early diagnosis of relapse, suggesting a potential for improved success of hormonal therapy via this regimen of treatment monitoring.
In addition, it has been shown that 80% of distant metastases arising in beast cancer patients followed by serial CEA and CA 15-3 in combination are detectable up to several months earlier than by standard follow-up. It is worthy of note here that, based on improved diagnostic sensitivity and specificity rates, the use of individual reference limits reflecting variations in marker levels for a given patient has recently been advocated in the detection of breast cancer recurrence, in lieu of standard thresholds for CEA and CA 15-3. While the aforementioned results for the utility of serum CEA and CA 15-3 toward the early detection of metastatic breast cancer are encouraging, they must be tempered by the fact that studies to date have not adequately established whether this early detection provides clinical benefit."
posted by Karen Weber Wednesday, October 4, 2000
Thursday, October 5, 2000
I forgot to mention that after meeting with the oncologist yesterday, Rick and I went out to lunch. Who should sit down across from us but Randy, the wonderful PT who gave me the compression tube and glove for the plane flight to Hawaii. I used to work with his wife, Sue, also a PT. So we were gabbing between tables, then Rick finished and left for work, and I moved over and gabbed some more with Randy. I can't really go into what he confided to me, but let me just say that everyone goes through life transitions. I had one when my knee gave up the ghost in '94. It wasn't pleasant, but I can look back on it and say that I have learned things about myself I would never have known if I hadn't gone through that experience. And in many ways, that gave me skills I've needed to deal with breast cancer. Randy is getting a wake-up call right now, experiencing physical symptoms telling him that it's time to make some changes in his life. I urged him to listen to his body, consider the problem prayerfully, and not to be afraid of change.Today, the burn on the lower rim of my breast is very, very sore. The radiation oncologist and therapists told me it's relatively early to have such a bad burn. It's exactly in the area where the nurse rubbed very hard trying to get a view of my heart on the echocardiogram. I'm sure that's why the area is already so burned. Going without a bra and tucking a t-shirt up under the breast is just as irritating (if not more) as wearing a bra. Rick remembered that the rads onc had mentioned a type of dressing that can be used on bad burns, so I remembered to ask about it today. It's called Vigilon, and it's a gel dressing that keeps the area cool. I'm thinking it would also keep the area covered so nothing could rub it. They told me that I'd only be able to get it one place - about an hour's drive away. I had to go to Wal-Mart today anyway, so I asked their pharmacy. Nothing to lose. They'll have it for me tomorrow. I also bought a signboard and pink ribbons to make a sign for Sunday's Race for the Cure. On my way out, I got disoriented and went out the wrong door. And there was Brent, a young man I worked with when I was still working as a PT. He recognized me, bald as I am, and told me he is doing the Race with a friend, too. I was so proud to see him working there. He has grown up from a goofy teenager to a really handsome young man. I hope we'll see him at the Race so I can get a picture with him.
VIGILON ® Dressings - this is the dressing the radiation oncologist recommended. I'm a little concerned, because this is how she spelled it but the pharmacist at Wal-Mart told me it was vigilin. Now I wonder if they are ordering the correct thing for me.
Skin Protocol - here's a thorough article about skin and radiation's effects on it. It also discusses skin care during radiation treatment.
posted by Karen Weber Thursday, October 5, 2000
Friday, October 6, 2000
What to Say and Do When Someone You Love Has Cancer - chat transcript at WebMd with Elise NeeDell BabcockWebMD Chat Transcript: "Breast Cancer and One's Career" with Ann Reiner, R.N., M.N., O.C.N.<
WebMD Chat Transcript: Breast Cancer and Lymphedema with Ann Reiner, R.N., M.N., O.C.N.
I picked up the Vigilon today, and all I can say is "Hallelujah!" I can live again! You don't need to a prescription to get it. It runs about $4 a dressing at Wal-Mart. Yes, that seems a little expensive, but our insurance company is covering so much of the radiation treatment, that even with this expense, we'll be spending less than we had thought we would. Last night, I was wondering if I was going to be able to make it through radiation. I was only comfortable on my back with my arm over my head -- not a very functional position. I was so tired yesterday from being in so much pain that I took a 3 hour nap and then slept 9 hours last night. Today, I never even felt like I needed a nap. This stuff is great!
posted by Karen Weber Friday, October 6, 2000
Saturday, October 7, 2000
The Vigilon is wonderful! Yesterday I had a 3" x 6" area that was a dark red, the color of the peel on a delicious apple. Today, that area is a medium pink and not painful. Having the Vigilon has allowed me to go back to wearing a bra, which is much more comfortable in so many ways. They had trouble getting me lined up for my radiation treatment yesterday because my breast was so swollen from not wearing a bra. Today I am sore and swollen across the back -- that's lymph fluid that's moved out of the breast and is now hanging out in my back and side. I'm just glad it's out of my breast now.I've been working to get a sign ready to carry during tomorrow's Race for the Cure. It will have a pink ribbon with the name of each woman I've met who has breast cancer. Now that all the ribbons are made, there are a frightening number. Rick will help me glue them to the sign tonight. If you signed my guestbook and shared that you are a survivor, you will be walking with me. So will the angels in my support group at Friends in Need (FIN). Stay tuned for pictures of the sign and the Race.
Bone Scan - this explains the bone scan procedure I'll be having in the next couple of weeks.
posted by Karen Weber Saturday, October 7, 2000