Monday, October 23, 2000
Posting very quickly -- I have an appointment with the radiation oncologist in 45 minutes. Hoping I can restart treatment, even though I have a lot of raw, open areas. I am so anxious to get done so that when things heal, it's permanent.Well, the radiation oncologist said we could start again, so I've had my 21st treatment - just 12 more left!
Estrogen breakdown affects breast cancer risk - more evidence for the benefit of exercise and low fat diet.
The Heart and Estrogen/Progestin Replacement Study Revisited: Hormone Replacement Therapy Produced Net Harm, Consistent With the Observational Data - in addition to possibly increasing your risk of breast cancer, HRT may hurt your heart.
Cancer Patients Encouraged to Express Themselves
I have several things I've been meaning to post, so let's hope I can remember them and get them down here. First, mom had her follow-up testing to see if they can correct the sleep apnea with the mask, and the results were great. Now she just has to wait for someone to write her a prescription for the machine, get it approved by insurance/Medicare, and then get it.
Second, when I saw the nurse a week ago about the burns and she suggested that I spend the week lying on my back, I asked her how I was supposed to work. She looked at me with a very puzzled expression, and said, "You are trying to work through this?" I told her that I have no real choice but to work or go out of business. I told her that Rick hasn't come up with any way to hang my laptop so that I can work while lying on my back. She just shook her head and laughed. It seemed odd to me that she was surprised that I'm working. Most of the women I've talked to who are in my age group do work through treatment, particularly radiation. I told her that I've cut my hours back to a bare minimum, but that I do have to sit up for those hours. She just shrugged. Well, the Vigilon has allowed me to do that. Oh, and good news today from the oncologist. I thought I couldn't wear Vigilon before treatment, because they've told me "nothing on the breast for 2 hours before treatment." But it's so painful not to wear it, I risked asking her about it. She looked briefly confused, and then said, "Oh, no! You can wear the Vigilon! I wondered why you were coming in with the cotton cloth on the burn instead of the Vigilon when it was so obviously painful." And I said, "Oh, thank God!" and she said, "I'm sorry I didn't tell you that earlier. I'm glad you asked." So the moral of this story is: tell your oncologist that you are working so that they respect your needs, and don't be afraid to ask questions!
Finally, I wanted to tell you briefly what my pastor said in yesterday's sermon about dealing with circumstances. He said that if you need to learn more about how to be a loving person, God will surround you with unloveable people. He gave other examples as well. After the service, I asked him, "Does God ever give up trying to teach a person something? Because I'm getting really impatient with him trying to teach me patience!" The pastor laughed and said he's wondered the very same thing himself. So I got no definitive answer on that question, and I fear that God never does give up. Over the years, he has managed to teach me some patience. I am much more patient than I was in the past, but apparently I have a few miles to go yet. Maybe I will need to work on this the rest of my life. Sigh!
posted by Karen Weber Monday, October 23, 2000
Tuesday, October 24, 2000
New Scope Could Look Inside Milk Duct For Breast Cancers - I'm not sure how this relates to Dr. Susan Love's new ductal lavage technique, but I think these both represent a great stride forward in early detection and diagnosis.Looking For Breast Cancer In Three Dimensions - 3D ultrasound improves diagnosis. Back when we were deciding on lumpectomy vs. mastectomy, there was some debate about whether I had one tumor or two. If it had been two, the mastectomy would have been the better option. We choose to go with the lumpectomy, and as it turns out, that was a good decision because it was just one very oddly shaped tumor. Having a 3D ultrasound would have helped this process.
Radiation boost reduces recurrence of localized breast cancer in young patients
A New Type of Breast Reconstruction
Alcohol Stimulates Estrogen Receptor Signaling in Human Breast Cancer Cell Lines - why ER+ women should lay off the sauce!
Jefferson study shows women with very early breast cancer and an inherited breast cancer gene at greater risk for second breast cancers - the risks of undertreatment with DCIS and BRCA1 or BRCA2 mutations.
Breast-cancer survivor finds therapy in song - just talked to this gal and am set up to do the recording session with her next month. Very exciting!!!!!!
Just got a call from my brother-in-law. Yesterday he heard the dreaded words: You've got cancer. It's in the colon, and they believe they have gotten it early. But they are doing staging tests now, and he'll have surgery to remove the tumor. Once they've done that, he'll know for sure what stage he is in. Just sent off a bunch of links for him to read while making treatment decisions. Ironically, I've just been re-reading the first month of my own journal and remembering what a confusing time it is just after you hear those words. Gary, my prayers are with you.
posted by Karen Weber Tuesday, October 24, 2000
Wednesday, October 25, 2000
Post-lumpectomy radiotherapy not associated with increased risk of MI - I am really not enjoying radiation therapy, but it's good to see a study that says I don't have to worry about further damage to my heart.herSource.com - this is a site dedicated to information about breast health.
alerts.com will send you an email alert whenever there is news at OnHealth about breast cancer or any other health problem you want. Just click on "Health News from Lifeminders and OnHealth" in the lefthand column and then fill out the form.
posted by Karen Weber Wednesday, October 25, 2000
Thursday, October 26, 2000
I wrote a huge long thing here last night and just before I clicked the post button, my computer crashed. Then I had to leave right away for band rehearsal, so I didn't get it reposted. So let me see if I can remember what I said. First, I said that I now have 10 radiation treatments left. As of 8:30 this morning, it will be 9. I've been waiting to get into those single digits before starting a major countdown and I'm almost there. Yippppeeeeeee! Second, the guys came and sprayed the concrete in the big mud pit we had out back. It now looks like a real, honest to goodness pool. Rick says the next thing they'll do is put in the waterfall, possibly this weekend.Finally, after radiation yesterday I dropped over to the Imaging side of the building to find out if there was anything I needed to know about today's test. And I told them that I had a previous allergic reaction to the contrast used for CTs back in the mid-80s. I walked away with a prescription for 8 steroid pills last night, and 8 this morning plus some benadryl. My allergic reaction in the 80s was relatively slow developing (10-15 minutes) and involved being completely covered by one giant hive. They gave me a HUGE shot of benadryl to stop it from going further and I was babbling incoherently for the next 12 hours. I was hospitalized at the time, so I didn't have to worry about drivers, but it's my understanding that I put on quite a floor show for the nurses when I got back to my room. This is what happens when you make a singer goofy! So, anyway, I found some radiology training material at the UNC website and have been reading it. Here are some of the exciting things I might experience with the contrast today: systemic hypotension (happens to everyone - but I already have low blood pressure so this could be more exciting than usual), myocardial depression (common - the efficiency of the heart muscle is decreased - again, I'm already low, so this could be exciting), and pulmonary edema (swelling of the lungs - not quite as common, but probably expected since I'm on the brink of heart failure already - I expect this might cause some difficulty breathing). Here's a quote from the class material:
"Cardiac effects of contrast media are observed with all intravascular injections of these agents, although
the effects are more important with injections into or near the heart and in patients with compromised cardiac status. Cardiac effects of contrast media probably cause many contrast-related fatalities.""Effects on the cardiovascular system usually occur following injection into cerebral or coronary arteries and include changes in EKG patterns, premature ventricular and atrial beats and arrhythmias. This is why EKG monitoring is so important in angiography. Contrast injections also cause decreases in blood pressure followed by gradual return to normal pressure. Other effects include cardiac failure, asystole, bradycardia, tachycardia, vasovagal reactions, thrombophlebitis, peripheral vasodilation, shock."
Now doesn't that all sound fun? They were going to shoot this stuff into my port, but since that would take the contrast right into the heart, I'm thinking that may not be such a good idea. I guess I'll let them dig around on my arm to see if they can find a vein. If anyone should like to read the rest of the material here, which includes what history should be taken before administering this stuff and other interesting facts, you can find it here.
Rick is going to take me over to the facility. I'd like it if he could hang around until we know I'm not going to stop breathing from the contrast media, but I don't know if he can do that. A woman from my Bible study will pick me up this afternoon whenever I finish the bone scan. I've packed a bag full of magazines, crossword books, a mystery, and my wireless phone in the hopes of
staving off complete boredom today during the hours where I'm just sitting waiting for radioactivity to settle into my organs and bones. I expect that by the time I'm done today, I will be glowing in the dark even though the radiation people deny it. I think the cats will enjoy that.I am home from the tests, and other than being extremely tired, everything went OK. I will write more later.
Normal bone scan - performed on a woman following lumpectomy.
What a day! First I swallowed all the pills and then Rick drove me out to the facility where I had my radiation treatment. Nine more to go!!!! Just three to the whole breast. Yippeeee!!!! Although my burns are much, much better, I do have a larger area of irritation. Today I had to use 2 Vigilon pads instead of one. Anyway, that is almost over! Next Wednesday we'll start the boost treatments.After the radiation, I went across the hall and signed in for the other tests. They gave me a long history form to fill out, then took me back to get the radioactive shot. I asked them to put in a hep lock since I was going to have the CT scan after. The tech got the nurse and she got right into the little vein on the back of my hand. After the tech injected the radioactive stuff, she gave me a large jar of chalky white stuff to drink. About 4 styrofoam coffee cups full. I chugged them down as quickly as possible. Then she gave me an equal amount of the yummy stuff to take out to the waiting room with me.
While I was waiting, I met a wonderful gal who was diagnosed with breast cancer in '92. She had mets a couple years later, was given only a few months to live. She's still around. She's been doing chemo every 2 weeks for the last 4 years (eeek!), but she's hanging in there and planting a garden every year. She went in to have her scan before I did. Then I sat and talked to her sister. She told me that she believes her sister is still alive today because of her positive attitude. I believe that!
Finally it was my turn to go back to the CT scan. It was mostly a boring experience. They used a pre-recorded voice to tell me when to breath or hold my breath. The voice was so perky and pleasant, it just seemed funny. I asked them to check for buried treasure, but the scan turned up no gold doubloons. Darn! My reward for behaving during the CT scan was a 32 oz glass of water to chug. Then I was sent out to the waiting room again. My new friends were gone, so I read some magazines. I brought them myself - the mags in the waiting room at this place are really pitiful.
The nuclear tech had told me to come back at 11:45 even if she didn't come out and call my name. So when 11:45 rolled around, I got up my courage and went through the door by myself. Nobody stopped me, so I found a seat outside the bone scan room and watched the guy before me get his bone scan. When it was my turn, I went in and hopped up on the table. While she was setting me up, the radiologist came in and asked if she'd dismissed the previous patient because he had a lesion on his skull. So they went off looking for him while the scanner started on me. When the nuclear tech came back, she and I shared vertigo experiences. She has had Meniere's disease for 20-some years. Whenever the scanner wasn't over my head, I tried to sneak peeks of the results on the computer screen behind me. Not really knowing what I was looking at, it was hard to tell what it meant but I had to look :-) When it was over, they only wanted X-rays of my right knee, which was completely expected. They have to confirm that the arthritis I reported is really there. Once they had the X-ray I was free to go. A nice woman from my Bible study group came and picked me up. While I waited for her, I sat outside and enjoyed the absolutely perfect weather today. Mid-70s, light breeze, and fluffy clouds. A perfect day.
posted by Karen Weber Thursday, October 26, 2000
Friday, October 27, 2000
CancerFatigue.org - a lot of emphasis on lung cancer, but great resource for fatigue related to any type of cancer.No advantage to screenings for endometrial cancer for patients on Tamoxifen
Melatonin -- The Multi-Benefit Supplement - 20 mg of melatonin taken with tamoxifen causes tumor regression in women with advanced breast cancer.
Battling breast cancer -- a reporter's perspective - if your mammogram is clear but you have other signs of a lump, get a second opinion!
I talked to Gary again today. So far they have drawn blood for tumor markers and done an ultrasound. The word on the ultrasound is good. Next week Gary will have the joy of doing the chest/abdominal CT scan like I had yesterday. Surgery probably not until week after next. Gary still sounds very upbeat, although the reading he's done about the surgeries have been somewhat sobering. One step at a time, Gary. It's the only way to make it through these next few weeks. We are praying for you.
I got a call from the radiation facility this morning saying that the table was broken. They offered me a choice of taking the day off or, if I insisted, they said they would try to squeeze me in once it got up and running again. I told them I'd taken my entire quota of days off, and I wanted to come in if at all possible. They got the table fixed at 3:15 and I was on it at 4. I now have just 8 more treatments left and just 2 more to the full breast. Laurie, my radiation therapist, told me that the boost is so much easier. I'll get to lie on a soft cushion instead of a hard table. And it won't burn the skin nearly as badly as the current regimen is. She said my breast will continue to get red as the effects of the radiation work their way up to the surface of the skin. I had already figured that out. During the week I took off, my armpit blistered, peeled, and completely healed three times over. Anyway, I'm glad to be almost done!
posted by Karen Weber Friday, October 27, 2000
Saturday, October 28, 2000
I've been busy today. First, Rick and I filled out our early ballots and mailed them in. Too many propositions in Arizona for me to handle it at the poll. Then I started preparing for tomorrow. My pastor is wrapping up a series on living a joyful life, and I'm speaking on How to Maintain your Joy in the Midst of Adverse Circumstances. I've only got 5 minutes to speak, so I'll just be hitting the highlights. I'm also singing a short solo in one of the praise songs, so it's a big day. I spent today editing and memorizing.
posted by Karen Weber Saturday, October 28, 2000