MedWorm provides a medical RSS filtering service. Over 6000 RSS medical sources are combined and output via different filters. This feed contains the latest medical blog items that have been tagged with 'chemo'. Sat, 03 Sep 2011 01:52:30 +0100 http://www.medworm.com/index.php?rid=4953279&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2011%2F06%2Fshort-term-planning.html I kind of left you in suspense yesterday.I was sitting an exam room, waiting to see my oncologist to discuss whether I could continue my break from chemo. Here's what happened next:We waited.We played a little Lexulous.I knit. My hands shook a little. And then the door swung open and Dr. B. entered the room. Dr. B. is not my oncologist. The cancer centre has a title called GPO (which I assume means general practitioner - oncology) for doctors who work with the oncologists. I hadn't seen Dr. B. in more than a year and without hesitating, we hugged each other - something I've never done with any doctor. She's wonderful and she's the only doctor I trust as much as my oncologist.After a physical exam (liver is where it should be and the size it should be. Chest sounds fine) and looki... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=4953279 Fri, 17 Jun 2011 13:00:00 +0100 4953279 http://www.medworm.com/index.php?rid=4934729&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2011%2F06%2Fnot-so-jaded-after-all.html Yesterday, I had an appointment with my oncologist, the first since our decision that I should take a break from chemo and do Herceptin only for three months.I usually do my appointments over the phone but I decided to go into the cancer centre so that I could have a physical exam and meet with him face to face. Also, I wanted Tim to come with me, so that he would get the same info as I did first hand and have a chance to ask questions. One of the great things about doing appointments on the phone is that I can carry on with my life around the house as I wait for my call. I was reminded of this after waiting first in the waiting area and then in the exam room for nearly an hour.But it was worth it.The first person I met was the nurse who works with my oncologist. It was the first time we m... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=4934729 Thu, 16 Jun 2011 23:38:00 +0100 4934729 http://www.medworm.com/index.php?rid=4841885&cid=t_103630_136_f&fid=37846&url=http%3A%2F%2Fhealthinfoispower.wordpress.com%2F2011%2F05%2F19%2Fasco-2011-genetic-biomarker-predicts-taxane-drug-induced-neuropathy%2F A new study has identified the first genetic biomarkers for taxane-induced peripheral neuropathy, a potentially severe complication of taxane chemotherapy that affects nerves in about one-third of patients with cancer receiving such treatment. ASCO Releases Studies From Upcoming Annual Meeting – Important Advances in Targeted Therapies, Screening, and Personalized Medicine The American Society of Clinical Oncology (ASCO) today highlighted [...] (Source: Libby's H*O*P*E*) Libby's H*O*P*E* blogs http://www.medworm.com/rss/comments.php?id=4841885 Thu, 19 May 2011 23:39:33 +0100 4841885 http://www.medworm.com/index.php?rid=5096923&cid=t_103630_136_f&fid=37852&url=http%3A%2F%2Fdonnatrussell.com%2F2011%2F05%2F16%2Fchemotherapy-oy-vey%2F Cartoon by Robert & Donna Trussell © 2011 Filed under: Cancer Tagged: cartoon, chemo, humor, medical, taxol (Source: Donna Trussell) Donna Trussell blogs http://www.medworm.com/rss/comments.php?id=5096923 Tue, 17 May 2011 04:16:53 +0100 5096923 http://www.medworm.com/index.php?rid=4829223&cid=t_103630_136_f&fid=37852&url=http%3A%2F%2Fdonnatrussell.com%2F2011%2F05%2F16%2Fcoupla-cancer-cells-sitting-around-talking%2F Cartoon by Robert & Donna Trussell © 2011 Filed under: Cancer Tagged: cartoon, chemo, humor, medical, taxol (Source: Donna Trussell) Donna Trussell blogs http://www.medworm.com/rss/comments.php?id=4829223 Tue, 17 May 2011 04:16:53 +0100 4829223 http://www.medworm.com/index.php?rid=4789447&cid=t_103630_122_f&fid=36582&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FSharpBrains%2F%7E3%2FYaFAHUra1Jg%2F Chemo brain or chemo fog refers to the cognitive changes that can occur during and after chemotherapy. These changes may translate into memory lapses, motor problems, difficulty finding words and problems managing multiple tasks and learning new things. Although the causes of the phenomenon are still under debate, it is nonetheless a real problem, affecting 20% to 30% of breast cancer patients who undergo chemotherapy. This New York Time article reports that chemo brain effects may be longer lasting than originally thought. “Chemo brain,” the foggy thinking and forgetfulness that cancer patients often complain about after treatment, may last for five years or more for a sizable percentage of patients, new research shows. The study, published in The Journal of Clinical Oncology, is a vi... SharpBrains blogs http://www.medworm.com/rss/comments.php?id=4789447 Thu, 05 May 2011 15:38:14 +0100 4789447 http://www.medworm.com/index.php?rid=4762908&cid=t_103630_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fwhat-are-you-wearing-to-chemotherapy%2F Recently I heard about Libre, a company that markets clothing for patients on chemo or dialysis. This is wonderful! Someone is thinking about the comfort of those of us who must undergo chemotherapy treatment. I am a few years past chemotherapy, but I remember the struggle of deciding what to wear to be comfortable and warm during those hours I sat in the chemo clinic. I actually spent time reviewing what clothes would be appropriate and convenient for treatment while making me feel good about myself. I don’t apologize for wanting to still look my best while undergoing treatment and spending time at the clinic. My husband would meet me there from work to sit with me during the infusion, so I felt the need to wear makeup and look as attractive as I could. The solution that I came up with ... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=4762908 Thu, 28 Apr 2011 17:55:10 +0100 4762908 http://www.medworm.com/index.php?rid=4631481&cid=t_103630_87_f&fid=39187&url=http%3A%2F%2Fgetbetterhealth.com%2Fwhen-less-is-more-smaller-doses-of-chemo-may-be-equally-effective-in-aml%2F2011.03.24 A recent issue of the New England Journal of Medicine includes an article with the bland title Cytarabine Dose for Acute Myeloid Leukemia. AML is an often-curable form of leukemia characterized by rapidly-growing myeloid white blood cells. Cytarabine — what we’d call “Ara-C” on rounds  — has been a mainstay of AML treatment for decades. The new report* covers a fairly large, multicenter, randomized trial of adult patients with AML. The researchers, based in the Netherlands, Switzerland, Belgium and Germany, evaluated 860 patients who received either intermediate or high doses of Ara-C in their initial, induction chemotherapy. According to the journal, “this investigator-sponsored study did not involve any pharmaceutical companies.” The main finding was that at a median follo... Better Health blogs http://www.medworm.com/rss/comments.php?id=4631481 Thu, 24 Mar 2011 18:00:58 +0100 4631481 http://www.medworm.com/index.php?rid=4592638&cid=t_103630_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fdont-be-bullied-into-treatment-youre-not-comfortable-with%2F .If you have ever been bullied, you know that you don’t realize it at first. Initially, people tend to blame themselves for how others treat them. I was bullied as a child by a group of girls, and I can tell you that your first instinct is to think it is your fault. As a new student in a new school, I was ostracized for the first few months. At eight years old, school was my whole life, so you can imagine how much the rejection of the other students affected me. It took me well into adulthood to find it easy to make new friends. Of course I am over it now, but it had a long-lasting effect. As adults we don’t call it bullying, we call it intimidating. Often we admire people who can intimidate others, regardless of the outcome. Perhaps that is why bullying has becoming epidemic among chi... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=4592638 Mon, 14 Mar 2011 18:35:31 +0100 4592638 http://www.medworm.com/index.php?rid=4813624&cid=t_103630_136_f&fid=37856&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FThePeacefulLiberal%2F%7E3%2FtI08X7t4nTc%2Fmy-awesome-husband-saga-continues.html I'm going to tell you all the most amazing true story about what my husband did for me this week and of course one good friend who helped us.    Yeah it could suck to be me if I didn't have such a bad ass husband by my side to slay some cancer ass if we can!  We always have hope and I'm also very aware of what we are facing as we enjoy every waking moment we can with each other.   I'm so freaking thankful that his job is allowing for him to be so passionate enough to take such great care of me.  He's better than  most of the nurses and I trust him a lot more in helping with so much that he does.    I can't help but gush about how wonderful my husband is to me as I survive what seems to be the most impossible.   How can I just be walking around o... ShoppingKharma: What comes around goes around blogs http://www.medworm.com/rss/comments.php?id=4813624 Fri, 18 Feb 2011 23:29:00 +0100 4813624 http://www.medworm.com/index.php?rid=4433286&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2011%2F02%2Fsmall-changes.html My life is a work in progress (some days I feel like there has been more progress than others) and I can never quite escape the urge to make changes as the new year rolls in.In the past I have I not found sweeping changes to be sustainable. Even my list of monthly changes last year didn't last past June. However, my pledge to make soup was a huge success and has served me well. In fact, today's lunch was soup (kale, sweet potato and red lentil with home made turkey broth) I made and froze a couple of weeks ago. During a chemo week, when I don't feel much like eating anything, it's a real gift to have something easy to heat up and healthy to eat. This year, I resolved that it would suit me best to make one new small change every week. And so far, this is working pretty well. I haven't ... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=4433286 Thu, 03 Feb 2011 22:13:00 +0100 4433286 http://www.medworm.com/index.php?rid=4275552&cid=t_103630_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fbreast-cancer-chemo-brain-and-post-traumatic-stress%2F I have posted tons of blogs over the past few years and one of my favorite still remains the one I did about chemo brain entitled, “You know you have chemo brain when.” The comments are actually hilarious — well, if you are a breast cancer survivor. I doubt if anyone else would find it as funny. I have written about chemo brain in other blogs since then, and I still wrestle with the idea that I am suffering — slowly, hopefully recovering some of my brain functioning affected by what I still call chemo brain. Lately I have had another idea about it. I think a component of the whole chemo brain condition could actually be attributed to post-traumatic stress. Post-traumatic stress has gained a lot of attention lately, especially as we see more and more war veterans returning home with... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=4275552 Mon, 20 Dec 2010 18:29:40 +0100 4275552 http://www.medworm.com/index.php?rid=4253412&cid=t_103630_136_f&fid=39026&url=http%3A%2F%2Fcarolinemfr.blogspot.com%2F2010%2F12%2Flack-of-brain.html So I claim chemo brain regularly. My husband agrees. Sometimes he even suggests I might possibly be a space shot. Today's newspaper has an article about memory loss as affecting older adults (not me) and what is normal and what is not:What’s normal and what’s notA memory problem is serious if it affects your daily life.- Sometimes forgetting names or not being able to recall a word.- Memory lapses that include walking into a room to retrieve something and then blanking on what that was.- Forgetting where you put the keys to your car. (Forgetting how to use the keys is not normal.)NOT NORMAL- Forgetting how to do things you’ve done many times before, such as cooking a dessert you’ve made for years.- Repeating phrases or stories in the same conversation.- Unusual trouble making choic... Caroline's Breast Cancer Blog blogs http://www.medworm.com/rss/comments.php?id=4253412 Mon, 13 Dec 2010 11:46:00 +0100 4253412 http://www.medworm.com/index.php?rid=4074343&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2010%2F10%2Fmaking-best-of-it.html I think I've coped with chemo week much better this time around (thanks in part to some good advice from a friend).If you are reading this post on a site other than Not Just About Cancer (besides Facebook or a feed reader), you are reading stolen content. (Source: Not just about cancer) Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=4074343 Fri, 15 Oct 2010 23:14:00 +0100 4074343 http://www.medworm.com/index.php?rid=4061049&cid=t_103630_136_f&fid=39026&url=http%3A%2F%2Fcarolinemfr.blogspot.com%2F2010%2F10%2Fchemo-brain-or-cancer-brain.html So maybe it wasn't chemo that made me a space shot... Maybe it was having cancer itself that did it. So if I went through it twice, I am at two levels of spaceshotness. I asked my husband to confirm this and he said 'for a spaceshot yes, this would make sense'. The real term is cognitive impairment. As discussed previously, they are several arguments for or against this. Is it just what happens to your brain while aging? Is it a symptom of PSTD? Is it a side effect of menopause for women? The answers may never be known because they probably will never be able to pin it downBut I digress. We are almost halfway through pinktober, well just over 1/3 of the way. I see the trend this year as to people questioning awareness vs. research. I have seen glimpses for this, not just with Dr. Love's in... Caroline's Breast Cancer Blog blogs http://www.medworm.com/rss/comments.php?id=4061049 Tue, 12 Oct 2010 10:31:00 +0100 4061049 http://www.medworm.com/index.php?rid=3889270&cid=t_103630_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fdealing-with-the-scars-from-breast-cancer%2F Recently I was invited to do a guest blog on a site that produces and sells cream for people dealing with the effects of radiation treatment on their skin, including to the breast area. They provide a blog and tip site that provides encouragement to survivors of all kinds of disease; they just happened to find my blog and thought I would be a good fit. I am often asked to write guest blogs for other sites. I love these invitations because I get to find out about efforts towards breast cancer awareness and research. I also find all sorts of new resources. I don’t endorse any products and generally no one asks me to. If I have written about a specific product or company, it is because somehow these organizations provide support to breast cancer research and survivors. I found out that Jean... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=3889270 Fri, 20 Aug 2010 19:34:58 +0100 3889270 http://www.medworm.com/index.php?rid=3858332&cid=t_103630_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fwhen-appearance-is-affected-by-disease%2F We attended a great luau this past weekend that was held in place of a bridal shower for a couple getting married in October. The bride is the daughter of my husband’s lifelong friend, so she is basically another niece to him. She looked stunning and happy and the event was just perfect. The mother of the bride is living with a chronic illness and is also a dear friend to my husband, although we haven’t seen her for years. I didn’t recognize her at all and had to ask my husband where she was. When he pointed her out I was shocked and saddened. This once beautiful woman has been completely transformed in her appearance due to the medication she is taking to combat the effects of her disease. She has put on a great deal of weight, but it is mostly her face, which is bloated by steroids... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=3858332 Wed, 11 Aug 2010 18:26:19 +0100 3858332 http://www.medworm.com/index.php?rid=3854710&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2010%2F08%2F43-things-part-three.html 22. One day, when I was small, my aunt bought me a Buster Bar. Before I could eat it, it fell off the stick. She didn't buy me another one. 23 I had Dilly Bars instead of cake on my birthday this year. I ate two.24. I also had a beer during the day on my birthday, something I consider very decadent. I usually only do this with my friends L. and K. (otherwise known as Sassymonkey).25. The day after a social gathering, I spend a lot of time second guessing my behaviour, even when especially when I had a good time.26. I feel guilty about something several times a day. Only recently did I discover that this is not a universal experience. I'm curious what it's like not to feel guilty. 27. My life in treatment is a constant tension between search for structure and then rebellion against sel... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=3854710 Wed, 11 Aug 2010 00:35:00 +0100 3854710 http://www.medworm.com/index.php?rid=3831526&cid=t_103630_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fyou-cant-tell-that-i-am-a-breast-cancer-survivor%2F With the huge debate in the United States right now about illegal immigration, the question comes down to: What does an immigrant look like? Some people come from different ethnic backgrounds, but that doesn’t necessarily mean they weren’t born here. Others, like me and my son The Big Guy, have no distinct difference in appearance from many natural-born Americans. Just to clarify, both the Big Guy and I are legal residents of the United States, and we don’t take that privilege lightly. Most of the time, however, we don’t even talk about being immigrants to this country and I doubt anyone (unless you hear me talk for a while) could tell. Just as I am not identifiable as an immigrant, it is not apparent either that I am a breast cancer survivor. Once we get through breast cancer, no ... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=3831526 Fri, 06 Aug 2010 17:38:35 +0100 3831526 http://www.medworm.com/index.php?rid=3784456&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2010%2F07%2Fliving-large.html Chemo typically turns me into a horned, fanged, clawed she-devil for at least one day following treatment. Today is that day. My head knows the mood will pass but boy am I pissy. But I'm trying to re-commit to having something vaguely resembling content on this blog, so I thought I'd share a couple of shots taken in a parking lot outside a Sonny's restaurant in South Florida (we'd had lunch that day at my first ever Waffle House. We were on a greasy streak).We had just come back from a day at Corkscrew Swamp and filled up on ribs and other good fried things and I think I was a little giddy.Anyway, this car just called to me and I made the boys take photos.If you are reading this post on a site other than Not Just About Cancer (besides Facebook or a feed reader), you are reading stolen cont... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=3784456 Fri, 23 Jul 2010 21:04:00 +0100 3784456 http://www.medworm.com/index.php?rid=3780523&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2010%2F07%2Fwatch-me-wave-my-hands-around-lot.html As promised, here is a direct link to the Connected segment on cancer blogging:http://www.cbc.ca/video/#/News/TV_Shows/Connect_with_Mark_Kelley/ID=1549366307If you are reading this post on a site other than Not Just About Cancer (besides Facebook or a feed reader), you are reading stolen content. (Source: Not just about cancer) Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=3780523 Thu, 22 Jul 2010 17:21:00 +0100 3780523 http://www.medworm.com/index.php?rid=3776571&cid=t_103630_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fmemories-are-harder-to-sell-after-breast-cancer%2F I have been planning to have a garage sale since March. I am not a big fan of garage sales, but the last few times we have put our stuff out to sell, we made hundreds of dollars. This seems to be motivation enough for my husband to be enthusiastic about hosting this very American community event. I promised him that I would get my stuff together and be ready in April. That didn’t happen, so we targeted a weekend in June. When that date passed, I agreed to work towards a date before the end of July. So here we are and I am still no further ahead than I was in March. As soon as my husband saw me sit at the computer to write today’s blog he immediately started with: “No, no, no…not until you get the stuff up from the basement for the sale.” Truthfully I was looking for a diversi... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=3776571 Wed, 21 Jul 2010 18:58:58 +0100 3776571 http://www.medworm.com/index.php?rid=3710745&cid=t_103630_136_f&fid=37852&url=http%3A%2F%2Fdonnatrussell.com%2F2010%2F06%2F29%2Fwomen-and-their-hair-a-love-story%2F Donna Trussell at 8 years old. The hair hasn't changed much, has it? My new post on Politics Daily / Woman Up. Women and Their Hair: A Love Story. “How can women think with all this hair?” That quote is from an inconsequential bit of fluff, “Switch,” a 1991 movie starring Ellen Barkin. Plot: a sexist man gets murdered by three ex-girlfriends and is reincarnated as a woman, whereupon he gets a taste of his own medicine. Silly movie. Classic quote. How indeed? You can pass all the equality laws you want, but there is one arena in which men and women will forever diverge. Women are obsessed with hair. Men, on the other hand, tend to notice hair when it’s so long they can no longer see. (Or when it disappears, but that’s another story.) Can you imagine ... Donna Trussell blogs http://www.medworm.com/rss/comments.php?id=3710745 Wed, 30 Jun 2010 03:24:14 +0100 3710745 http://www.medworm.com/index.php?rid=3648750&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2010%2F06%2F10-in-june-part-one-health.html The last month has been challenging, as far as my health is concerned. There is nothing seriously wrong with me and as far as the cancer is concerned, I'm in fine shape. Instead, I've been dealing with some unpleasant and uncomfortable digestive issues. Whether this is due to my age or the toll of long term systemic cancer treatment, I don't know. I just know that, by the time I went to see my doctor, I was feeling prettty miserable.I suspected my gall bladder was the source of the problem but we had the benefit of a recent abdominal CT scan that showed that organ to be fine. My doctor diagnosed me with Gastroesophageal Reflux Disease (or GERD) and instructed me to stop consuming coffee, tea, chocolate or coffee (my immediate response was the somewhat ironic, "I'll die!" She also gave me s... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=3648750 Wed, 09 Jun 2010 18:31:00 +0100 3648750 http://www.medworm.com/index.php?rid=3632401&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2010%2F06%2Fwell-hello-there.html Yikes!It's been a while, hasn't it?I seem to have lost my blogging mojo. I remember a while back when Average Jane wrote that her blogging had been derailed (my word, not hers) by Twitter and Facebook. I get that now. Whenever I have a quick observation or a link to share, I can gratify myself instantly with Twitter (I'm lauriek, by the way). And while each tweet does go to Facebook and the sidebar of Not Just About Cancer (on the right - see it there?), it hasn't done much for my blogging.I don't want to give up the blog though, so I'll try and re-commit to posting regularly (how's that for hedging my bets?).On the cancer front, there is a little news. I loved having a break in April. That month also brought another clean CT scan. My oncologist continues to be happy with how things are go... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=3632401 Fri, 04 Jun 2010 17:09:00 +0100 3632401 http://www.medworm.com/index.php?rid=3522793&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2010%2F04%2Ftdm1-update.html Thank goodness for friends. Over the past few days, at least a half dozen friends pitched in to help me get more info on the new breast cancer wonder drug, T-DM1, which is supposed to be available soon on a compassionate use basis. I was hoping to find it in a phase II clinical trial, but that option is no longer out there.There is a phase III trial at Kaiser in California, but I don't qualify for that trial for several reasons, including my melanoma history, and I don't want to do a phase III trial anyway--because I could be randomized to the other arm of the trial and not get the T-DM1 at all. Dr. Livingston, my former medical oncologist and now the godfather of my cancer treatment, told me in an e-mail this morning that Dr. Lee (my present oncologist) should contact ... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3522793 Fri, 30 Apr 2010 21:41:09 +0100 3522793 http://www.medworm.com/index.php?rid=3502957&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2010%2F04%2Fcheryl-takes-neratinib-or-cheryls-take-on-neratinib.html  Hi there. My name is Cheryl. I mentioned to Jeanne that I've entered a clinical trial and she offered to let me do a guest post. Here it is.  I started a clinical trial six weeks ago for the experimental drug neratinib. This particular trial is trying to determine if adjuvant neratinib reduces recurrences in HER2 breast cancers for non-metastatic patients. I found out about the trial from my oncologist. Honestly, it startled me at first. I decided to enter the trial for the following reasons, presented in order of importance to me:  Fear of Recurrence: I was diagnosed at age 40 with Stage III, locally advanced, HER2+, ER+, PR+ breast cancer. My tumor was large (5.5 cm) and my lymph nodes were involved. I remember a d... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3502957 Sat, 24 Apr 2010 17:41:07 +0100 3502957 http://www.medworm.com/index.php?rid=3494503&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2010%2F04%2Fanyone-taking-tdm1.html This is a new drug for women with HER2-neu-positive, advanced breast cancer that is going to be available for compassionate use very soon, according to the cancer patient grapevine. I'm wondering if any of you are taking it in a clinical trial, and what you can tell me about the side effects?Readers of this blog probably know that I've pretty much run out of treatment options. I'm not sure T-DM1 is right for me either, because it is a combination of Herceptin and a "potent cytotoxic DM1." If I understand correctly, that second part is what I call a "conventional chemo drug," and I can't tolerate those anymore because of chemo toxicity from all the chemo I've had over the past 11-plus years. I'm going to discuss it today with Dr. Lee, ... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3494503 Thu, 22 Apr 2010 16:17:06 +0100 3494503 http://www.medworm.com/index.php?rid=3487337&cid=t_103630_136_f&fid=39026&url=http%3A%2F%2Fcarolinemfr.blogspot.com%2F2010%2F04%2Fthey-do-this-on-purposes.html The 'They' are refer to are those mysterious people who create the conspiracy theories (and steal lost socks from dryers) around the world. Its all a plan to drive us breast cancer people crazy, kicking and screaming as our brains overload from contradictory information yet again. So tell me are vitamins and calcium good or bad in the role of lowering risk of breast cancer. Well they just don't know. Read this article which says that calcium lowers risk of breast cancer AND it contradicts a 2008 study that said the opposite. I even blogged about this back in November 2008. So the burning question is not resolved and 'they' are stuck in a never ending vicious cycle of 'yes they are good' vs. 'no they aren't'. I think they do a study get one set of results and then run another study for conf... Caroline's Breast Cancer Blog blogs http://www.medworm.com/rss/comments.php?id=3487337 Tue, 20 Apr 2010 10:32:00 +0100 3487337 http://www.medworm.com/index.php?rid=3479873&cid=t_103630_136_f&fid=39026&url=http%3A%2F%2Fcarolinemfr.blogspot.com%2F2010%2F04%2Flong-term-chemo-effects.html For a quick bit of humor, watch this first... See, it pays to be polite. Don't honk at old people.So I was surfing the internet (wasting time online again) and found this one person asked a question if chemo could have caused her hands to shake. So having an inquiring mind, I had to read the whole damn thing. I had forgotten a lot of these - conveniently blocked them out of mind. Perhaps this is due to my cognitive dysfunction (a/k/a chemo brain). So in conclusion, having chemo brain can be helpful. You have a reason for blocking out the bad parts of life.So today is another rainy yucky day. Yesterday I was bad. I didn't go for a walk (gasp!) nor did I do all my exercises last evening (double gasp!) nor did I take all my vitamins (triple gasp!) nor did I eat a salad (quadruple gasp!). But ... Caroline's Breast Cancer Blog blogs http://www.medworm.com/rss/comments.php?id=3479873 Sat, 17 Apr 2010 11:09:00 +0100 3479873 http://www.medworm.com/index.php?rid=3456847&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2010%2F04%2Fhow-its-done.html Everyone makes mistakes. And sometimes things go wrong that are not anyone's fault but someone has to take responsibility for making things right.Over the last couple of years, I have come to realize that this is a deeply held value of mine, one I am trying to share with my kids. Mistakes don't necessarily make me angry but I can get royally pissed off profoundly annoyed when anyone - adult or child - tries to shirk responsibility. On the other hand, when people step up, acknowledge their mistakes and make a genuine effort to make things right, my resentment tends to evaporate entirely.Some examples: 1. A few weeks ago, a received a notice from the Ottawa Public Library that a digital book I had ordered was ready for download. The same day, the library's new web site went live. When I trie... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=3456847 Sat, 10 Apr 2010 13:30:00 +0100 3456847 http://www.medworm.com/index.php?rid=3454139&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2010%2F04%2Fpictures-big-and-little.html I woke up yesterday morning with a sore throat and a headache.Here we go again. Having a compromised immune system is no picnic. In the last year, I missed my Toronto book launch because of the flu, got H1N1 on the day the vaccine became available, was hit by Norwalk virus when my spouse was away (and found myself crawling along my kitchen floor with a can opener to "make dinner", got pink eye and more little flus and colds than I want to count.Chemotherapy destroys cancer cells. It also destroys the cells that fight illness. Despite the fact that I try to limit my exposure to germs, wash my hands regularly, get enough sleep and eat well (not to mention the ten doses of Neupogen with which I inject myself after every treatment), I seem to fall prey to almost every little bug that passes my... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=3454139 Fri, 09 Apr 2010 13:30:00 +0100 3454139 http://www.medworm.com/index.php?rid=3454140&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2010%2F04%2F10-things-to-do-in-april.html This month, I actually wrote up my 10 things and posted them over at BlogHer on April 1st. And then, I let chemo and the long Passover/Easter weekend sidetrack me. I seem to be somewhat lacking in motivation on the blogging front these days. I have lots to say but I don't always feel like saying it.Perhaps blogging should be on my list of May 'to-do's.For now, though, here is how I did in March (completed in blue, partially done in green and not even started in purple): 1. Finish re-reading the draft of my novel (carried over from February). I discovered when I reached the end of the document that I had just stopped writing when I'd written the required 50,000 words. The story has no end. And needs some serious editing. That will be a goal for a future month.2. Organize my clothe... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=3454140 Thu, 08 Apr 2010 17:53:00 +0100 3454140 http://www.medworm.com/index.php?rid=3385512&cid=t_103630_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fa-funny-surprise-from-breast-cancer%2F There is one positive thing that I can honestly say came out of chemotherapy. It came up with my hairdresser today when she happened to notice that I have great eyebrows. I know it sounds funny, but hey, let me have this one thing. I have always had darker and thicker eyebrows than most women, but not quite as great as Brooke Shields. I was constantly plucking and shaping them and then breast cancer hit. Chemotherapy thinned them out quite a bit, but it couldn’t quite get rid of them. After my hair grew back, my eyebrows took on a new shape – and I couldn’t be happier. So today, my hair dresser commented on how great my eyebrows looked. When I told her I did not have to pluck or shape them ever, I knew she was impressed. We suffer so much through chemotherapy. Many of us struggle wit... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=3385512 Fri, 19 Mar 2010 21:05:55 +0100 3385512 http://www.medworm.com/index.php?rid=3362542&cid=t_103630_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fincluding-family-in-breast-cancer-decisions%2F My son – The Big Guy – injured his knee last fall and had minor surgery to repair a torn meniscus. This is huge in his world because he is a college football player attending school on an athletic scholarship. This past week he injured his knee again and I am beside myself with worry about him, his emotions, and his future. Of course I am not at all concerned about his football, that is the least important to me, but not to him. We have different perspectives and different priorities. Truthfully though this is a minor injury and if we can get him to rest and stay off his knee this should clear on its own, but I still worry. The Big Guy is only 18 and can’t see beyond the next few years. For many of us that face breast cancer we often find that our priorities are different than our fa... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=3362542 Fri, 12 Mar 2010 22:26:00 +0100 3362542 http://www.medworm.com/index.php?rid=3350510&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2010%2F03%2F10-things-in-march.html  It apppears that I have been afflicted with writers' block and spring fever (it's been unseasonably warm and sunny here in Ottawa). And for a while there, I was recovering from chemo.Those are the excuses I'm offering up for not writing very much lately.I do have a bunch of posts percolating, or at least on my "to write" to do list but I thought I would kick off my return with another kind of list - an update for my 10 things for February and the new list for March.Here's how I did last month (completed in blue, partially done in green and not even started in purple).1. Sock monkey hat done. The pom pom has already fallen off. Once I sew it back on, I'll take photos.2.  Socks not finished.3. I made jambalaya and sweet potato soup.4. I read 6 books, including the Canada Reads one... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=3350510 Tue, 09 Mar 2010 18:53:00 +0100 3350510 http://www.medworm.com/index.php?rid=3298550&cid=t_103630_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fbreast-cancer-and-the-power-of-napping%2F There is new information out of the University of California at Berkley that indicates that napping during the day boosts cognitive power. I like this! I am a napper. I don’t always get the opportunity for a short afternoon nap, but when I need it I take it. It might just be a few minutes before dinner or an evening class but it helps. When we go through chemotherapy or radiation one of the most distressing side effects is fatigue. Usually I worked in the morning and then went to Chemotherapy in the afternoon, returning to work the next day. This resulted in only a half day off from work. After a couple of months I would take the day after chemo off as I began to feel the cumulative effects of months of treatment. That would give me the whole day to rest. I then learned that if I cou... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=3298550 Mon, 22 Feb 2010 22:16:14 +0100 3298550 http://www.medworm.com/index.php?rid=3283785&cid=t_103630_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fis-it-seasonal-affective-disorder-or-breast-cancer-depression%2F It’s snowing today. Well, it is Michigan. I keep asking my husband, ‘What self-respecting Canadian (me) moves south of the border and stops in Michigan?’ I grew up in northern Ontario where it snowed a lot more than Michigan. The difference in the winter weather between the two places is huge though. In the little city where I grew up we had tons of snow, but we also got a lot of sunshine. The sun shone almost every day in the winter, so much so that our city was called the sunshine capitol of the North. It made for a fun winter. Even though I had a great weekend skiing in the north part of Michigan and we haven’t had near the snow we had last year, I am finding the gloomy winter almost unbearable this year. Usually I muddle through but I have to say that I am battl... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=3283785 Wed, 17 Feb 2010 23:08:07 +0100 3283785 http://www.medworm.com/index.php?rid=3280156&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2010%2F02%2Fupdate-on-10-for-february.html Last week, I joined a BlogHer Group committed to getting ten things done in February. In the spirit of accountability, here is my progress thus far:  1. Finish sewing the eyes and mouth on D.'s sock monkey hat.Still to do, but D. has really stepped up the nagging, so I promised him that I would get it done by Friday.2. Graft the toes on my sister's socks (both these projects have been very, very close to finished for months. It's embarassing). No progress yet.3. Make soup twice twice.I made sweet potato soup with roasted garlic. It was extremely labour intensive (and I made it worse by not paying attention to the directions and, instead of slicing 12 sweet potatoes in half, I sliced them all thinly. It was ridiculous and made every other step ridiculously complicated) but delicio... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=3280156 Tue, 16 Feb 2010 17:41:00 +0100 3280156 http://www.medworm.com/index.php?rid=3227963&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2010%2F02%2Fsoup-and-missing-muse.html I made three soups in January.Red lentil and carrot from Cooking With Foods That Fight Cancer.Broccoli cheddar from Looneyspoons.Jambalaya from Weight Watchers (heavily modified: I substituted white fish for shrimp, used more liquid and had sausage on the side, so folks could choose their level of spiciness. And I didn't use chicken. And I used different spices. This for me, was a wildly adventurous departure).If I don't run out of time today, I plan on making a pre-chemo Sweet potato and roasted garlic soup from the Eat Clean Diet. A friend gave this one to me. I recall it being time consuming but delicious..I have had a post on the tip of my fingers about my current highly ambivalent feelings about my life, identity and treatment but I can't seem to bring myself to write it.In fact, I ca... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=3227963 Mon, 01 Feb 2010 17:15:00 +0100 3227963 http://www.medworm.com/index.php?rid=3189351&cid=t_103630_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fcancer-patients-need-treatment-but-that-doesnt-mean-we-trust-it%2F There is no way to express the horror I feel over the devastation and human suffering caused by the earthquake in Haiti. It is beyond understanding how these people are coping in the midst of this. I watched the news with real heartbreak as some Haitians refused to eat rations provided off of trucks. One individual took the package and started telling everyone not to eat it as the date said it was expired. People started rejecting the packaged food and throwing it on the ground as the truck drove off. Others chased after the truck begging them to provide more. As friends and family expressed their dismay at this scene, I began to comprehend. Imagine people desperate for food receiving something as foreign to them as a small package of nutrition. There could have been mistrust. Remember, Ha... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=3189351 Tue, 19 Jan 2010 18:39:02 +0100 3189351 http://www.medworm.com/index.php?rid=3172161&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2010%2F01%2Fback-home-on-the-couch.html Just a quick post, because I'm tired, I'm in pain, and I had a long and complicated day of medical appointments. The good news is my cyberknife treatments finished today, and I have the four-color certificate to prove it! I could have done without that bit of levity, but maybe other patients feel differently. I also got a hug and a nice goodbye (with a handful of chocolates) from one of my technicians, and that was appreciated. He took good care of me, and made things easy for me, and I will never stop noticing the many people around me who behave like this.He did ask me if I was planning to celebrate tonight, and that hadn't even crossed my mind. When you have metastatic disease, the treatment never really stops, and in fact I have three weeks more of radiation sta... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3172161 Thu, 14 Jan 2010 00:00:04 +0100 3172161 http://www.medworm.com/index.php?rid=3136693&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2010%2F01%2Fblustery-gloomy-and-wet.html My first post of 2010!!!It's 3:20 p.m. and already getting dark. Of course, it never really got light today. I went out to walk Connie during a break in the rain and didn't get half a block before it started up again. Since I was in a sweatshirt, I got wet to the skin even though I cut our outing short. Luckily, I had a warm sauna to come home to. After 20 minutes of sweating, I showered and put my yukata back on--a signal that I don't intend to leave the house for the rest of the day. I've been getting messages from blog readers all day long--thank you all for those. And thanks to Carver, a fellow cancer blogger, for her special brand of understanding. Comfort FoodI just made myself some delicious homemade macaroni and cheese. I used organic penne p... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3136693 Sat, 02 Jan 2010 00:06:29 +0100 3136693 http://www.medworm.com/index.php?rid=3129652&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F12%2Fi-have-roots.html A couple of weeks ago, I played "beauty shop" with Constant the Wonder Dog and colored my peach-fuzz hair. (See: Playing 'Beauty Shop' With Connie)  Now, just two weeks later, I have noticeable dark roots, and definitely more hair. This is so exciting! So I need to color my hair again.  Still no photos, sorry, but maybe tomorrow when Monica comes over to take jewelry photos for me we can get one of my hair.  I did not enjoy being bald this time. I much prefer to fly under the radar and have hair during cancer treatment. Whatever choice we make for me next time--still being debated by Dr. Lee and me--it will be something that leaves the hair alone.  That's not how I make my treatment choices, by whether or not they will make me bald, ... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3129652 Tue, 29 Dec 2009 21:47:08 +0100 3129652 http://www.medworm.com/index.php?rid=3115251&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F12%2Fresearching-neratinib.html I have an appointment with Dr. Lee this afternoon to discuss neratinib further. He is just back from the breast oncology meeting in San Antonio, and he should have information to share about neratinib from that meeting. I've spent the morning reading through some of the info that readers had forwarded to me, and I got some useful information from the breastcancer.org neratinib discussion board. All of these women are getting neratinib in a clinical trial, and some are getting a placebo--that would be a drag. Here's that link: Neratinib Clinical Trials Several women taking neratinib have had serious problems with diarrhea, which is the Number One issue with the drug. Some 85 percent of women who take it get diarrhea. Some of them were able to bring this under contr... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3115251 Tue, 22 Dec 2009 19:10:34 +0100 3115251 http://www.medworm.com/index.php?rid=3079531&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2009%2F12%2Fwriting-your-way-through-breast-cancer.html It's been two days since chemo, so I feel lousy and have the attention span of a gnat.It works out well for me, therefore, that I have something I've been meaning to share with you all for a while now.I really like the Philadelphia based organization Living Beyond Breast Cancer. I've been fortunate enough to attend two of their own conferences (one called "News You Can Use" and one specifically for women living with metastasis) and the Annual Conference For Young Women Affected By Breast Cancer, which they co-sponsor (last year's was in Dallas and I'm applying for a grant, in the hopes of being able to attend in Atlanta this year. It will be the 10 year anniversary of the conference).A little while ago, LBBC contacted me to see if I would be willing to be interviewed for their Winter 2009/... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=3079531 Thu, 10 Dec 2009 21:34:00 +0100 3079531 http://www.medworm.com/index.php?rid=3052359&cid=t_103630_136_f&fid=39025&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2Feverythingchangesbook%2F%7E3%2FNj8fi5RUbj0%2Fcancer-and-nutrition-balance I’d always thought of registered dietitians as women who sit behind a desk outside a cafeteria and tell you to drink Ensure and eat canned vegetables.  I recently I’ve learned how wrong I was. Tons of chronically ill patients feel pressured, overwhelmed, and unhinged by all the healing diets that are thrown in our faces.   (Want some proof? Check out the comments on my post Are You Overwhelmed By Cancer and Diet Choices.)  I’m constantly wondering what’s smart and scientifically proven, and what is just trendy, a scam, or even a well meaning goose chase for the cure.  What about cleansing, eating raw, eating organic, and fasting?  How can cancer patients eat well if they don’t have three hours a day to cook or a bank account to pay for Whole Foods shoppi... Everything Changes blogs http://www.medworm.com/rss/comments.php?id=3052359 Thu, 03 Dec 2009 08:42:46 +0100 3052359 http://www.medworm.com/index.php?rid=3023377&cid=t_103630_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fanother-side-effect-of-chemotherapy-smell-sensitivity%2F This Saturday I had an amazing day with one of my close friends. She planned a fun girl’s day for us starting with a pedicure for me. She wanted me to unwind – I’ve been a little overwhelmed lately. It was a wonderful day and I am so grateful to have a friend like her. In fact I have the most wonderful friends in the world, they all care deeply and make me feel loved. My darling friend had a sample of a fragrance she loved and wanted to purchase a bottle of the spray cologne. The problem was she didn’t know the name so the sales associates had to spend some time to track it down, which involved smelling a lot of perfume samples in the store. I used to always wear perfume. It was one of my favorite gifts, and my mother always gave me my favorite fragrance for Christmas. ... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=3023377 Mon, 23 Nov 2009 20:55:15 +0100 3023377 http://www.medworm.com/index.php?rid=3004063&cid=t_103630_136_f&fid=39025&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2Feverythingchangesbook%2F%7E3%2FG4OenXy9bD8%2Fchemo-brain-new-york-times I thought I’d let you know that I am a guest blogger today for the New York Times and have written a post called When Cancer Muddles the Mind.  Have a read and leave a comment on the Well Blog. (Source: Everything Changes) Everything Changes blogs http://www.medworm.com/rss/comments.php?id=3004063 Tue, 17 Nov 2009 21:48:05 +0100 3004063 http://www.medworm.com/index.php?rid=2996003&cid=t_103630_136_f&fid=39025&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2Feverythingchangesbook%2F%7E3%2Fh2ri1Ovus04%2Faggressive-patient Ever since I was a little kid, I’ve had a huge don’t mess with me attitude.  I’m a scrawny Jewish girl, but am quite in touch with my inner Rambo.  It’s no surprise to anyone who knows me that I am a really aggressive cancer patient. But lately I’ve been wondering if aggressive is always the smartest choice. Sometimes I’m aggressive out of fear.  Living with cancer is damn scary.  It’s easy to want to pull out the big guns so I can feel forceful in fighting my disease.   My doc told me I could lower the dosage of my medication slightly.  Instead of embracing the prospect of diminished side effects, I want to stay at the highest dose possible.  It’s a bit of a “Thank you sir. May I have another?” attitude.  A hurts so good attitude. But is my choice pro-... Everything Changes blogs http://www.medworm.com/rss/comments.php?id=2996003 Mon, 16 Nov 2009 08:45:17 +0100 2996003 http://www.medworm.com/index.php?rid=2984983&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2009%2F11%2Fmy-husbands-chest.html You don't need to tell me how lucky I am.I have a roof over my head, great medical care and I'm surrounded by people who love me.And don't think I forget how very lucky I am to be alive at all. Why did I get to go into remission? Why me? I am indeed very fortunate.But there are times when I do feel sad that I will never put this cancer behind me. I feel the toll ongoing treatment takes on my body and my emotional well being.So last night I stood in my kitchen, with my head on my husband's chest (we say we were built for each other. My head lands flat on his chest and tucks under his chin). He put his arms around me and we just stood there, breathing together.He didn't need to say anything. He understood my frustration. Only a few hours before I was finallly feeling sharp and healthy and en... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=2984983 Wed, 11 Nov 2009 19:33:00 +0100 2984983 http://www.medworm.com/index.php?rid=2977529&cid=t_103630_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fwe-interrupt-this-life-to-bring-you-breast-cancer%2F Do you ever feel like that? It’s like someone just put a stop to your life and stuck you with breast cancer. I have to wonder every now and then how things would be different if I had never been diagnosed with breast cancer. I found a picture of myself recently that was taken a year after breast cancer when my hair was a dark brunette after growing back. If I had never had breast cancer I never would have known what I looked like with dark hair. Isn’t that silly? But those are the shallow thoughts I have sometimes. Another one is thinking about how I might have gone for a breast lift and implants now that I am aging a little bit. With my reconstructed breasts I may have ended up on the better end of this deal though. Anyways, what I am talking about is the private world where we en... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=2977529 Mon, 09 Nov 2009 21:46:27 +0100 2977529 http://www.medworm.com/index.php?rid=2977528&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2009%2F11%2Faware-of-irony.html Life is funny.This morning was perfect weather for a bike ride. The sun was out and the temperature climbed to 17C (that's 62.6 in American). It was my first time on the bike in more than a week - since before the plague toppled my family, like a series of dominoes.It was a fun ride, and I didn't even mind the big hill I have to climb on my way to the hospital. I arrived twenty minutes after I set out, a little sweaty and with my heart pumping. As I locked up and headed into the cancer centre, I noted with pleasure that I hadn't been coughing."It feels good to be healthy."I very nearly said it out loud.I was suddenly struck by the absurdity of my situation. Here I was, going to get my bloodwork done the day before chemo and thinking about how healthy I am.Three years ago, at almost exactly... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=2977528 Mon, 09 Nov 2009 19:26:00 +0100 2977528 http://www.medworm.com/index.php?rid=2970385&cid=t_103630_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fa-tattoo-to-cover-up-my-chemo-port-scar%2F A real growing trend is tattoos. Remember when you only saw them on sailors? Well if you are my age you do. Anyway, I have been researching tattoos for a paper I am writing for one of the classes I have been taking at the university this fall. It seems they could be dangerous, certainly hard to get rid of, and even a hindrance to success in the work place. Still, more and more people are getting them. As one young person told me; “By the time I make it to management, the CEO will have a tattoo, so my tattoo will be a usual thing.” He is probably right. For anyone that has had breast reconstruction you may have had your areola tattooed onto your new breast. One thing that I have been thinking about getting a tattoo for is my port scar. On the right side of my upper chest the scar that w... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=2970385 Fri, 06 Nov 2009 20:28:57 +0100 2970385 http://www.medworm.com/index.php?rid=2959039&cid=t_103630_136_f&fid=37852&url=http%3A%2F%2Fdonnatrussell.com%2F2009%2F11%2F03%2Fcancer-patient-boot-camp%2F Cartoon by Robert & Donna Trussell © 2009 Posted in Cancer Tagged: cancer cartoon, cancer humor, cancer patient, cancer survivor, chemo humor, kick cancer's ass, lance armstrong, medical cartoon, medical humor, robert trussell (Source: Donna Trussell) Donna Trussell blogs http://www.medworm.com/rss/comments.php?id=2959039 Tue, 03 Nov 2009 18:07:32 +0100 2959039 http://www.medworm.com/index.php?rid=2924934&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F10%2Fthe-answer-from-wyethpfizer-is-no-sort-of.html I spent three days or so this past week researching the whole "compassionate use/expanded access" issue for neratinib, the new breast cancer targeted therapy that is now in clinical trials. And then I wrote a memo summarizing my findings and the steps my oncologist and I would have to take to get the drug ... most of this from the FDA's Web site and from e-mail exchanges with various people. Step One was for Dr. Lee, my oncologist, to talk to an oncologist at Wyeth (now part of Pfizer) to see if the drug company was willing to give me neratinib on compassionate use grounds since I do not qualify for a clinical trial. Dr. Lee called the Wyeth oncologist, Dr. Anna Berkenbilt, yesterday morning. And, not to drag this out, the answer was NO. Even tho... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2924934 Sat, 24 Oct 2009 17:19:04 +0100 2924934 http://www.medworm.com/index.php?rid=2924940&cid=t_103630_136_f&fid=37852&url=http%3A%2F%2Fdonnatrussell.com%2F2009%2F10%2F24%2Fchaos-theory-cancer-patient-boot-camp%2F New cartoon by Trussell & Trussell on AOL’s Politics Daily: Cancer Patient Boot Camp. Posted in Cancer, Politics Daily Tagged: cancer cartoon, cancer patient, cancer survivor, cancer treatment, chemo, humor, lance armstrong (Source: Donna Trussell) Donna Trussell blogs http://www.medworm.com/rss/comments.php?id=2924940 Sat, 24 Oct 2009 15:56:45 +0100 2924940 http://www.medworm.com/index.php?rid=2916399&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F10%2Fcompassionate-use-new-fda-rules.html Just two months ago, The FDA issued some new rules to help people like me gain access to "investigational drugs" that may help them. "Investigational drugs," in case you aren't up on the jargon, are drugs--like neratinib--that are somewhere in the clinical trial approval process, but have not yet been approved for general use. The "people like me" part is that I don't qualify to take part in a clinical trial, because I have had too much chemo in the past. The other "people like me" part is that I have a life-threatening illness, metastatic breast cancer. Last time we checked, the cancer that was first diagnosed in my right breast in 1998 and then spread to my bones two years later, is now in my right lung, lymph nodes in two... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2916399 Wed, 21 Oct 2009 20:31:03 +0100 2916399 http://www.medworm.com/index.php?rid=2916400&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F10%2Fneratinib-a-reply-from-wyeth-now-pfizer.html I had e-mailed some questions to the PR people at Wyeth, which makes neratinib, a couple of weeks ago, and re-sent the e-mail two days ago when I hadn't heard back. I finally received a reply yesterday, from a PR person, Danielle Halstrom, who apologized for not getting back to me sooner. She mentioned that Wyeth has been acquired by Pfizer, which someone else had told me, but I don't know what implications that will have for my getting neratinib from Wyeth on compassionate use grounds. (You can read the company's announcement of the acquisition here: Merger)I had asked when neratinib was expected to be approved, and Halstrom replied: "Neratinib has just entered Phase III development, so we cannot predict when it will be approved for use by patients... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2916400 Wed, 21 Oct 2009 18:39:11 +0100 2916400 http://www.medworm.com/index.php?rid=2908849&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F10%2Fback-on-the-couch-.html My living room couch seems to be the center of my universe. I BLOG from the couch, using my laptop and WiFi. I EAT on the couch, more often than not. I WATCH MOVIES on the couch, also on my laptop.And I sometimes SLEEP on the couch, either for a nap or all night long. Oh, and Connie has staked out his spot on the rug next to the couch, within reach of my hand. The cat naps on the couch as well. So I'm starting to see my life as a pattern of short trips away from the couch. Today, I paid some bills, then took the bills to the post office to mail, and continued on for my CT scan appointment at Northwest Hospital's outpatient facility. The scan is no big deal. I've had them there before, and this scan is quick. Nothing to drink, only IV contrast... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2908849 Mon, 19 Oct 2009 22:12:07 +0100 2908849 http://www.medworm.com/index.php?rid=2894726&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F10%2Fneratinib-compassionate-use-application.html My good friend Teri found the link to Wyeth's patient assistance Web page for doctors. Here's that link: Information for HCP "HCP," in case you aren't up on the jargon, means "health care professional."According to the Web site, these are the steps required to enroll a patient:1. Obtain an application and privacy authorization form (link provided).2. Complete the form with the patient.3. Write a prescription for up to a three-month supply of the medication, and specify up to three refills.4. Have the patient sign the privacy authorization form.5. Mail the application and the prescription to the address on the form. All things considered, this isn't too bad. (Of course, I haven't read through the application yet.)I would add this: Keep a c... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2894726 Wed, 14 Oct 2009 18:21:07 +0100 2894726 http://www.medworm.com/index.php?rid=2890888&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F10%2Fneratinib-my-new-pen-pal.html My recent posts on neratinib have brought me a new pen pal, a Canadian woman who has breast cancer and is getting neratinib in a clinical trial. This is great for both of us, because we will have someone to compare notes with going forward. I haven't started on the drug yet. In fact, my next task is to find out how to get it on compassionate use grounds, because I don't qualify for any of the clinical trials, and I don't think I can wait until it is approved. If you have this info, please send it to me: jeanne.sather@gmail.comI'm feeling pretty wrung out: Older Son's birthday on Sunday was great, but by dinner time I was so tired that I couldn't really eat. And I felt like I was getting a cold. I spent all day yesterday in bed, and feel slightly be... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2890888 Tue, 13 Oct 2009 17:54:04 +0100 2890888 http://www.medworm.com/index.php?rid=2857560&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F10%2Fa-blood-transfusion.html I got a surprise when I went in for my treatment appointment yesterday: Dr. Lee told me I needed a blood transfusion.I was surprised because I've been feeling pretty well. I even went to water aerobics on Thursday and did an hour of moderately strenuous exercise. Granted, I spent most of the rest of the day on the couch, but that's life with cancer. Anyway, the reason Dr. Lee thought I needed a transfusion was that my hematocrit was below 30, it was 29 actually, and 30 is the cutoff for giving a blood transfusion. Now, I've never received a transfusion in the whole 11 years that I've been living with cancer, so I had a lot of questions. In case you are wondering exactly what hematocrit is, well, I didn't really know either, other than that it has something t... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2857560 Sat, 03 Oct 2009 16:40:15 +0100 2857560 http://www.medworm.com/index.php?rid=2862714&cid=t_103630_136_f&fid=36469&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2Fespeciallyheather%2FEH%2F%7E3%2F3fpmmkZB_eQ%2F The amazing thing about this song is that it was written by a man who claimed to have cancer yet did not. He faked his illness for 2 straight years, deceiving not only his parents congregation, but his wife and parents, yet the Lord turned it around for good. I first heard about this back when I was on chemo and it was honestly to close to home for me at the time. I wondered how in the world someone could take something so vile such as cancer and use it for monetary gain.. and sympathy. He even went so far as to dawn oxygen and walk with a cane to elude his symptoms were real. So I chose not to write about it because of the state of mind I was in at that time. It was too close to home for me at that time. Then I heard about this 10 year girl who sang it after receiving her heart transplan... Especially Heather blogs http://www.medworm.com/rss/comments.php?id=2862714 Wed, 30 Sep 2009 12:49:58 +0100 2862714 http://www.medworm.com/index.php?rid=2846445&cid=t_103630_111_f&fid=36048&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAHeartyLife%2F%7E3%2FxJp9PidL17k%2F Here’s some good news when it comes to treating cancer. German researchers have found that using heat to help treat tumors helps chemotherapy work better. Apparently when the tumors are “targeted with heat treatment” it increased the response of the chemo to about double. This was all without creating more harmful effects. Just think of that. If you could reduce the amount of chemo someone received, how much quicker they might be able to recover. This is preliminary news and more research will need to be done, but it is definitely a step in the right direction. Image: sxc.hu. Post from: Blisstree Heat Helps When Treating Tumors (Source: A Hearty Life) A Hearty Life blogs http://www.medworm.com/rss/comments.php?id=2846445 Tue, 29 Sep 2009 20:38:25 +0100 2846445 http://www.medworm.com/index.php?rid=2842763&cid=t_103630_136_f&fid=36469&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2Fespeciallyheather%2FEH%2F%7E3%2F67tiaK_Vlxg%2F {This post was originally written on August 26, 2007} I’m sitting here, trying to think about how to put my heart into words, but the only thing that comes out is “Whatever, Lord.” Whatever you need to do, do it. Give me the grace and the strength to fight this, because right now I have none of both. I don’t want to do this any more; I don’t want to feel sick and tired anymore. I am so sick of being sick. If this is what I will feel like for the next year, you have to give me the strength to combat this, because I can’t do this on my own strength. I know you have a plan, and your plan is perfect, but does it have to be so hard? Does it have to be so tiring, draining and so endless? I know you love me, I know that… but right now I need to feel it. I need to feel your hand o... Especially Heather blogs http://www.medworm.com/rss/comments.php?id=2842763 Mon, 28 Sep 2009 06:00:06 +0100 2842763 http://www.medworm.com/index.php?rid=2812547&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F09%2Fsaturday-update.html Writing yesterday's post (see: Lowering the Bar) helped me a lot, as did all the comments and e-mails from friends and readers in response to it. Thank you all, for understanding me. That is such a gift. Cancer CenterI saw Dr. Lee yesterday, and we discussed my treatment further. I explained that I just couldn't force myself to take the oral etoposide, and he seemed OK with that. My counts were good. I told him that I had thrown up twice during the week, but didn't want to worry about that too much right now. (Then I threw up again early this morning after a sleepless night, so may revisit that issue.)Also, no diarrhea after the latest treatment, which was irinotecan (reduced dose) and Herceptin. My weight was down four or five pounds though, which is quite a bit in two weeks, but I ha... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2812547 Sat, 19 Sep 2009 23:44:21 +0100 2812547 http://www.medworm.com/index.php?rid=2807842&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2009%2F09%2Frandom-out-of-necessity.html It's Day 3 After Chemo and my brain is jumping around like a puppy with a burr up her butt. I can't focus on anything for more than a few seconds so here is a little bit of randomness:One:It appears that my family and I will be among the first in line for the H1N1 vaccine. My kids will be so thrilled.Two:My friend Jeanne, the Assertive Cancer Patient, posted about a reader in Texas who has $187,000 worth of Neupogen that she can't use:"Texas doesn't have a drug repository that would take this medicine and pass it on to someone who needs it, and she hates to see it go to waste, as do I. Any ideas, readers? Obviously, we can't break the law and put this stuff on eBay or Craigslist, so I am looking for legal ways to get these expensive drugs to someone who can use them."Three:Yesterday, I got... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=2807842 Fri, 18 Sep 2009 18:06:00 +0100 2807842 http://www.medworm.com/index.php?rid=2807843&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2009%2F09%2Ffrequent-flyer.html I had chemo on Tuesday. It was kind of a long day (I started with bloodwork at 8:30 and left the hospital at 3:30) which passed quickly due to the company of a really good friend. We had so much to say to each other that we needed the whole day to cover everything (except for when I was sleeping. The demerol/gravol combo really does knock me out).It would have been an even longer day if I hadn't been on the receiving end of a little preferential treatment. At one point, the nurse who coordinates the chemo floor came out to reception and wrote on the notice board that they were running an hour behind schedule. I happened to be standing nearby and she caught my eye and said to me, in French, "environ" (approximately). I was surprised, then, when my name was called a few minutes later. I pass... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=2807843 Thu, 17 Sep 2009 18:59:00 +0100 2807843 http://www.medworm.com/index.php?rid=2800661&cid=t_103630_136_f&fid=36469&url=http%3A%2F%2Fespeciallyheather.com%2Fmusic%2Fshow_698526.mp3 I have to tell you that I was so very nervous going into this interview… and it shows! I never realized how many times I said “um” in a conversation! It was a true pleasure to be interviewed by Melissa. She is a wonderful person and so easy to talk to. I was amazed at how quickly 45 minutes flew by! God is really using her to reach others through her radio show and it was a true honor to be one of those women He chose to use. Pull up a chair and listen to what the Lord has done in my (and her) life thus far! (Source: Especially Heather) Especially Heather blogs http://www.medworm.com/rss/comments.php?id=2800661 Wed, 16 Sep 2009 17:47:03 +0100 2800661 http://www.medworm.com/index.php?rid=2789168&cid=t_103630_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Foncology-appointments-and-co-pays%2F Last week I had my regular oncologist appointment. My appointments are now four months apart instead of three months. I had the usual blood pressure check, review of medication and blood tests. The doctor also palpated for any lumps and listened to my lungs through a stethoscope. The usual stuff. She also checked my chart for my last chest X-ray and gave me a script since it’s been over a year and a half. That is something that I don’t like. I have the same discussion every visit about the necessity of X-rays and whether they can promote cancer. The response is always the same one about how these x-rays have very little radiation and it is important to monitor my lungs. This time I also wanted to know the increased risks for another cancer because of chemotherapy. My father wen... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=2789168 Fri, 11 Sep 2009 19:24:25 +0100 2789168 http://www.medworm.com/index.php?rid=2772690&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F09%2Fwhats-that-shower-oh-its-my-hair-.html Last night, I was crashed out on the couch, watching reruns of "Supernanny" (a show I'd never seen until last night since I don't watch TV) on Hulu, when I realized there was something fuzzy in my mouth. I wiped my mouth, thinking it was cat hair, and then I realized the couch was covered with short, curly, fuzzy hair--MINE. So, my hair is falling out after all. And my scalp is quite tender, which is common with hair loss due to chemo. Dr. Lee thought it might not, since I only got the irinotecan this round, and skipped the etoposide, but surprise, surprise. It's not particularly upsetting, but I do need to find my hats. Luckily I already have several great hats from when I've been bald in the past. Read more: Bald Other than that, th... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2772690 Mon, 07 Sep 2009 17:52:29 +0100 2772690 http://www.medworm.com/index.php?rid=2770227&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F09%2Fso-far-so-good.html It's Day 2 of my second round of treatment with irinotecan, and so far so good. No nausea, no GI problems, no nothing. That's the way I like it!It's a holiday weekend here in the States, but I'm staying home, as I usually do on holiday weekends. It's such a relaxing time to be in town. I've been gardening--it rained last night and has been sprinkling off and on again this morning, which is a good time to transplant. I moved some plants into the last section of my parking strip  that needed planting and then threw some bark mulch around. And I finished up two new bracelets. I need to wait for Monica to get back from her vacation to get photos up on my jewelry blog, but those, and more, will be coming soon. I've been working with that group... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2770227 Sat, 05 Sep 2009 19:31:07 +0100 2770227 http://www.medworm.com/index.php?rid=2768812&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F09%2Ffour-down.html I knew the only way I was going to make it through a week with four medical appointments in five days was to take it a day at a time. That's what I did--I refused to think beyond what I needed to do each day, and when the essential tasks were taken care of, I crashed out and babied myself. Going in for scans when you are expecting bad news is incredibly stressful. An energy suck, even when you think you are fine with it. Of course, spending my week like this meant that a number of things didn't get done. I'm behind on paying bills, and not because I don't have the money. I don't have the energy. And there are posts to this blog that I've promised various people I'd write, and many of them did not get done. If I'm talking about you, e-mail m... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2768812 Sat, 05 Sep 2009 00:10:00 +0100 2768812 http://www.medworm.com/index.php?rid=2766271&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F09%2Fthree-down-good-news.html Well, I'm three-quarters of the way through a week of heavy medical appointments ... and it looks like I'm going to make it to the end. The only thing left on my schedule is a treatment appointment tomorrow. I saw Dr. Lee today to get the results of the CT of my abdomen that I had on Tuesday, and also to talk about my kidney function. He ordered the creatinine test from my last blood draw done STAT, so he had those numbers also. Now that the appointment is behind me--and the news was good--I will confess that I was pretty worried that there was going to be a tumor in my ovaries or some other nasty place in my tummy. During one of my late-night conversations with myself I had already picked out my surgeon, just in case the news was bad. So it is a huge relief to he... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2766271 Thu, 03 Sep 2009 23:34:12 +0100 2766271 http://www.medworm.com/index.php?rid=2762115&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F09%2Ftwo-down.html As I mentioned the other day, this week four out of five days are given over to medical appointments. Today, I saw my therapist, as I do almost every week. That only takes an hour, but when things are as intense as they are now, it kinda takes the whole day. Because I come home from the appointment with wheels turning in my head, and that takes pretty much all the bandwidth that I have. The session was good. Then I came home and made some potato salad from scratch (using chives from my garden, but the rest of the ingredients were store-bought--maybe I DO need to get some chickens!) and then I plopped down on the couch and read and then watched a couple of TV shows on Hulu.There were some other things that I would have liked to have done, like jewelry and gardening, but I ... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2762115 Thu, 03 Sep 2009 01:57:15 +0100 2762115 http://www.medworm.com/index.php?rid=2752117&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F08%2Fhold-the-chemo.html I went in to my cancer center on Friday, wholly prepared to get my second dose of irinotecan. but Dr. Lee surprised me. He held the dose. I'd had a really hard time with the first round, which was Herceptin and irinotecan by IV, then oral etoposide at home. I only managed to take two doses of etoposide before I called it quits on that one. So I went to my appointment with Dr. Lee with a long list of questions and concerns. As always, he listened carefully and answered fully. Another thing that's great about Dr. Lee: If he doesn't know, he says so. That reassures me, in a paradoxical way, because I know he's being straight with me. No Cancer Dictators in my life!The ListHere's the list:1. I was only able to take two doses of etoposide. (Then I detailed ... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2752117 Mon, 31 Aug 2009 17:53:00 +0100 2752117 http://www.medworm.com/index.php?rid=2730329&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F08%2Fin-case-youre-wondering-or-worrying-.html I'm fine. I'm busy right now with a friend from the Bay Area who is visiting. We are old friends, going back about 20 years to Tokyo days. So I won't be blogging much--if at all--for the next couple of days, but I will be checking e-mail. I'm still feeling a bit sick from the new chemo, but better than I was even a day or two ago. And I haven't taken any more etoposide--I think it is too toxic for me. I go back in on Friday for another dose of irinotecan, and I'm willing to get it once more before I make a decision about whether or not to continue with that drug either. Yesterday my friend and I went out to Snohomish, and I got some vintage/antique buttons to use in my jewelry and also some bakelite. Today we went to the International Distric... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2730329 Mon, 24 Aug 2009 21:37:59 +0100 2730329 http://www.medworm.com/index.php?rid=2725224&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F08%2Ftopping-off-the-tank.html I woke up this morning feeling moderately awful--dizzy and nauseous, plus those frequent trips to the bathroom--and I was debating calling my doctor to see about going in for IV fluids. I did decide NOT to take another dose of etoposide, the oral chemo drug that is supposedly part of my new regimen. (I've only taken two daily doses so far.) And to be fair to my doctor I need to call and let him know what is going on. But in the meantime, I took some Citrucel, which helps with the GI problem, and a zofran, which helps with nausea, and I drank a glass of cold milk, which seems to settle things down, and I feel a lot better. Almost all of these symptoms could be caused by dehydration, so I am slowly topping off my tank. If I continue to feel better, I won't go in for... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2725224 Fri, 21 Aug 2009 17:11:15 +0100 2725224 http://www.medworm.com/index.php?rid=2712325&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F08%2Fside-effects-city.html After a lot of thought, I decided to go ahead and do yet another round of fairly tough chemo. During the first couple of months of the summer, I was on what I call "chemo light," a regimen that allowed me to travel and have a fairly reasonable quality of life. But it wasn't strong enough to keep my cancer in check, and I have pretty substantial disease progression, including cancer in my lymph nodes in two places. The cancer in my bones has progressed as well, and I have some new sites and also progression in some places that we already knew were there. The tumor in my right lung is a bit bigger than it was a couple of months ago as well. Don't ask me how many times I've done chemo, because I have stopped counting. Also, with metastatic disease, you ... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2712325 Tue, 18 Aug 2009 22:24:51 +0100 2712325 http://www.medworm.com/index.php?rid=2699858&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F08%2Fno-chemo-today.html Well, the saga continues, and I didn't get my first dose of irinotecan today as scheduled. I got a call from the cancer center, and when I called them back this morning they said we would have to put the chemo off till tomorrow. The explanation was that the scheduler hadn't allowed enough time for me to get both the irinotecan and Herceptin, which I've been on for most of the past seven or eight years. It was a letdown, to say the least, because I had geared myself up to start this new chemo regimen--even to getting my hair cut super short and then bleaching it--but that wasn't all. To top it off, I still haven't found a pharmacy that will fill my prescription for oral etoposide, the second drug in my new regimen, and bill Medicare and also WSHIP. The ... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2699858 Thu, 13 Aug 2009 23:03:37 +0100 2699858 http://www.medworm.com/index.php?rid=2691739&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F08%2Fsmall-funk.html I've been in a small funk the last two days. Actually, mostly yesterday. I'm starting to pull out of it today already. It's not really depression, and it's certainly not anxiety. I think I just fell into this after two weeks of really high-energy productivity. Productivity dealing with life-and-death matters. That's bound to cause a reaction. So I'm being kind to myself today. I bought some popsicles, my new favorite food, and I just ate a root beer one followed by a banana one. Those are my two favorite flavors, left over from childhood. My grocery store sells a box that has those two flavors plus lime. I leave the lime ones till last, because I don't like them all that much. My current treatment with Tykerb causes dehydration, and I hav... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2691739 Tue, 11 Aug 2009 18:38:28 +0100 2691739 http://www.medworm.com/index.php?rid=2670949&cid=t_103630_122_f&fid=36582&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FSharpBrains%2F%7E3%2FrZYUDP-BGt4%2F Good article today in the NYT on "chemo brain" - some typical short-term and long-term cognitive consequences of chemotherapy. The Fog That Follows Chemotherapy (New York Times) One quote is critical - for chemo brain and also for a variety of clinical conditions that present associated cognitive impairments: "Controlling for brain function before cancer treatment begins can help determine cause and effect. In one study, cancer patients took a battery of neuropsychological tests before starting chemotherapy, three weeks after completing treatment, and again one year later. Although a third of the patients had signs of cognitive impairment before therapy began, the number jumped to 61 percent after treatment, and half remained impaired a year later." As we have discussed... SharpBrains blogs http://www.medworm.com/rss/comments.php?id=2670949 Wed, 05 Aug 2009 02:47:22 +0100 2670949 http://www.medworm.com/index.php?rid=2660929&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F07%2Fmoving-slowly-toward-a-decision.html I've been taking my time making a decision about what cancer treatment to do next. The option of stopping treatment altogether has also been on my mental table. Being able to take my time like this is a luxury that I didn't have in the past. On the day that Dr. Livingston confirmed that my breast cancer had metastasized to my bones, for example, I went straight from the bone scan to the treatment room and started my chemo that very day. Is there a risk that my cancer may get out of control while I'm dawdling around making up my mind? Yes, there is, but it's a risk I am willing to take. The upside to doing it this way is that I am calm. I'm not anxious and stressed as I was when making important treatment decisions in the past, nor am I depressed. As yo... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2660929 Fri, 31 Jul 2009 21:36:36 +0100 2660929 http://www.medworm.com/index.php?rid=2639698&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F07%2Fnot-quite-ready-to-talk-about-it.html Quite a few of my friends and probably many of my loyal readers know that I have some treatment decisions to make. It has become apparent that because of cumulative chemo toxicity, I can no longer tolerate normal doses of conventional chemo drugs. (See: Running Out of Options)A good part of my spring and summer were given up to tests and scans to find out why I am so short of breath, and the answer, when it finally came, was disappointing. The most likely reason is simply the tumor load from my cancer. And then just before I left for Germany, I got the results of a PET/CT scan that showed significant disease progression. In addition to the tumor in my right lung, which has grown slightly, I now have cancer in two places in my lymph nodes. There are also lots of new spots ... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2639698 Sat, 25 Jul 2009 15:51:56 +0100 2639698 http://www.medworm.com/index.php?rid=2512898&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F06%2Fchemo-cap-anyone.html My friend Penelope, a cancer blogger who lives in Oregon, has offered to knit chemo caps for anyone who wants them. She feels like knitting right now, which is why she's offering. And if you're going to go bald from chemo, then a knit cap is probably the most comfortable way to keep your head warm. (I know, it's summer now, but think ahead, so to speak.)And a hand-knit cap, made by someone who "gets" it, probably has all sorts of good energy knit into the fabric. Plus, you get to pick your own yarn. Anyway, here's the link to her post that gives all the details:Would You Like a Chemo Cap? And here's the link to my posts about going bald: Bald @ Jeanne Sather 2009.  (Source: The Assertive Cancer Patient) The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2512898 Sat, 20 Jun 2009 17:22:47 +0100 2512898 http://www.medworm.com/index.php?rid=2512857&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2009%2F06%2Fyou-cant-always-get-it-channelling.html Mixed results from my appointment with my oncologist yesterday. First of all, I was late. As I was riding to the hospital, I noticed that it was getting harder and harder to pedal. When it actually became impossible, I got off the bike and checked. My front brake was squeezing the front wheel. Hard. I think I had been riding like this for some time - and tightening every time I braked. I just thought I was tired and out of biking shape. I solved the problem by releasing the front brake entirely (I'm sure that's not the safest thing). This meant that when I hit the big hill before the hospital, I was already wiped out from pedalling with all that friction.I arrived at the cancer centre twenty minutes late and a hot, red, sweaty mess.When I finally saw my doc, he easily agreed to a break in ... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=2512857 Thu, 18 Jun 2009 16:08:00 +0100 2512857 http://www.medworm.com/index.php?rid=2511645&cid=t_103630_117_f&fid=38158&url=http%3A%2F%2Famericanacupuncture.blogspot.com%2F2009%2F06%2Ffight-cancer-with-vitamin-c.html As a medical physician for over 50 years, I strive to give you the best medical information on controversial medical subjects and let you, the reader, come to your own conclusions. I have no ties to any organization, pharmaceutical, or lobby group. As an practicing medical acupuncturist since 1982, I find western medicine and medical acupuncture are very complimentary that results in astounding healing in pain management, addictions to cigarettes and food, and a host of other maladies. Let me know how we are doing. Your constructive comments are always appreciated. Click the RSS post button on the upper right hand corner if you would like to receive by email our future medical blogs. Visit http;//www.americanacupuncture.com/ for more detailed information on healing.FIGHTING CANCER WITH VIT... Dr. Needles Medical Blogs blogs http://www.medworm.com/rss/comments.php?id=2511645 Thu, 18 Jun 2009 15:32:00 +0100 2511645 http://www.medworm.com/index.php?rid=2512858&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2009%2F06%2Fbrain-of-monkey.html First: My spouse and I had the following conversation this morning: T.: "I had a really hard time falling asleep last night."Me: "Did you have monkey brain?" T: "What? Like I couldn't stop thinking about bananas?" Second:I woke up feeling kind of bummed out this morning. After coffee, my mood changed dramatically. I actually tweeted, "I think I love coffee the most." Third: Speaking of Twitter, a bunch of folks have changed their time zone to Tehran, in order to confuse Iranian censors. I've done it, too, although I am not sure if this really works. And I love the fact Twitter and Facebook are playing a role in helping activists all over the world get the word out. Makes me feel virtuous and less like I am just wasting time (although, I know it's a stretch to describe playing a Scrabble kn... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=2512858 Wed, 17 Jun 2009 17:33:00 +0100 2512858 http://www.medworm.com/index.php?rid=2448070&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2009%2F06%2Fi-have-excuses-no-dog-didnt-eat-my-blog.html I'm back.I didn't intend to keep Will and Billy and the boys at the top of the page for so long. I keep meaning to post but I never seem to get around to it. I wanted to assure those who have expressed concern that all is well.It's time to re-commit to regular updates and to begin, please let me explain my absence:The last round of chemo was kind of hard. I'm not sure if I was hit with an additional bug but I experienced some really gruesome side effects (I'll let you use your imagination), especially last Friday, when I should have started to feel better.The truth is, that I am taking longer to recover every round, these days. My oncologist has suggested that I skip a treatment this summer. I plan on taking July off so I can go to BlogHer (Did I mention that I got in? I was so disappointe... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=2448070 Tue, 02 Jun 2009 17:01:00 +0100 2448070 http://www.medworm.com/index.php?rid=2453085&cid=t_103630_136_f&fid=36162&url=http%3A%2F%2Fmyelomablog.com%2F2009%2F06%2F01%2Fduke-lemur-center-bone-marrow-transplant-clinic-today%2F Monica and I got to go to the Duke Lemur Center in Durham, NC today for business.  It was great!  I took some pictures through the fences with my iPhone camera, and this was the best of them. I’m afraid I can’t tell you what type of lemur this is, but I’ll find out. Just before the meeting at the Lemur Center, I had a checkup at the Bone Marrow Transplant Clinic.  I’ll have the results of my tests on Wednesday.   It’s been almost two years since I had a skeletal survey, so I scheduled that for September.  The skeletal survey is a series of xrays of the long bones, skull and ribs and spine. I asked about a recent report I read that suggests that PET scans should be used for monitoring myeloma.  My doctor does those if there’s activity such as an in... beth's myeloma blog blogs http://www.medworm.com/rss/comments.php?id=2453085 Tue, 02 Jun 2009 00:06:17 +0100 2453085 http://www.medworm.com/index.php?rid=2442581&cid=t_103630_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Frunning-from-chemotherapy%2F Remember those days when you woke up and realized that it was the day you had been dreading? The day when you had to go for chemotherapy? Well then, you probably remember once or twice wondering what would happen if you just didn’t show up. You knew the doctor might call you and maybe family and friends would offer to take you so you didn’t have to go alone, but beyond that it really was your will that got you to go for your treatments. Imagine then if you decided not to go for chemotherapy and the police showed up to take you. That’s the startling reality for Daniel Hauser, the young 13-year-old boy who ran away recently with his mother to avoid having chemotherapy for Hodgkin’s lymphoma. Those of us that have been through chemotherapy can imagine the desperate hope of that boy to... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=2442581 Fri, 29 May 2009 21:11:50 +0100 2442581 http://www.medworm.com/index.php?rid=2442587&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2009%2F05%2Fmaybe-its-demerol.html Or post-chemo brain rot. But I loved this: (Source: Not just about cancer) Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=2442587 Tue, 26 May 2009 23:19:00 +0100 2442587 http://www.medworm.com/index.php?rid=2442599&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F05%2Fcatching-up-with-myself.html Well, I finished my two-week marathon of doctor's appointments and tests, and I really can't recommend that strategy to anyone--it was tough. By the end, I simply wasn't able to absorb any more information, which is why I haven't blogged about Thursday's and Friday's events yet. And I think I'm going to skip over most of those events here, and just say that Dr. Lee and I agreed on a new treatment plan on Friday subject to Medicare's paying for it. The new plan, I'm calling "chemo light," is only targeted therapies, no conventional chemo. So the drugs I will be getting:Avastin, every three weeks, by IVHerceptin, every three weeks, by IVZometa, every six weeks, by IVAnd Tykerb, three 250 mg. tablets daily. Dr. Lee wants to do so... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2442599 Tue, 26 May 2009 18:00:09 +0100 2442599 http://www.medworm.com/index.php?rid=4245503&cid=t_103630_136_f&fid=35285&url=http%3A%2F%2Fwww.glamour.com%2Fhealth-fitness%2Fblogs%2Flife-with-cancer%2F2009%2F05%2Frefusing-treatment-you-wont-be.html Have you guys seen this crazy story? About a mom who is refusing to have her child go through chemotherapy for one of the most beatable cancers out there...hodgkins lymphoma. It's a religious thing—the family believes in natural healing methods. They are actually attempting to treat a completely curable disease with "herbal supplements, vitamins, ionized water and other natural alternatives." You may disagree with me but I have to say... (Source: Life with Cancer) Life with Cancer blogs http://www.medworm.com/rss/comments.php?id=4245503 Wed, 20 May 2009 14:00:30 +0100 4245503 http://www.medworm.com/index.php?rid=2406031&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F05%2Fone-piece-of-the-puzzle.html I called Dr. Lee's office today to get the results of my brain MRI (I wasn't all that worried, but why wait for these results when they have them?), and got some good news for a change:No brain mets. Like I said, I wasn't all that worried, but once the suggestion was made, it's hard not to think about it. Vomiting can sometimes be caused by brain mets, Dr. Lee had told me. And I've been vomiting lately. (Isn't this fun?)So that's one thing eliminated. Not sure how many possibilities are left ... Not sure that I care to count them up, either. I'm just going to bask in this small piece of good news. Younger Son is coming home with a friend today to go out to dinner with me, and I think Older Son will be joining us as well. We're going to the Su... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2406031 Thu, 14 May 2009 23:20:24 +0100 2406031 http://www.medworm.com/index.php?rid=2406033&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F05%2Fanyone-on-ixempra.html When I saw Dr. Lee last Friday, he had a new drug to propose to me: Ixempra (generic: ixabepilone). Now, I don't think I'm going to take this one, because I read the list of side effects, and it's a long and nasty one. But I'd be interested in hearing from anyone who is taking this drug or has taken it in the past. My most important question is: How well did you tolerate it--Was it a tough go, or a walk in the park?Here's the explanation of the drug (All Greek to me): Ixempra (ixabepilone) is a microtubule inhibitor belonging to a class of antineoplastic agents, the epothilones and their analogs. The epothilones are isolated from the myxobacterium Sorangium cellulosum. Ixabepilone is a semisynthetic analog of epothilone B, a 16-membered polyketide macr... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2406033 Thu, 14 May 2009 18:38:46 +0100 2406033 http://www.medworm.com/index.php?rid=2406029&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2009%2F05%2Fcash-would-be-nice.html The last time I checked in for chemo, I accidentally handed the receptionist my Subway card, instead of my green hospital card.She thought this was so funny, that she showed everyone in the room. I pretended to be angry, trying to grab the card back. It felt good to laugh in that, sometimes sad, place.I told her though, that my subconscious had been at play. I gave her the Subway card because I feel that after so many rounds of chemo, I should get some sort of bonus prize. (Source: Not just about cancer) Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=2406029 Wed, 13 May 2009 14:00:00 +0100 2406029 http://www.medworm.com/index.php?rid=2406038&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F05%2Fi-hate-this.html I saw Dr. Lee last Friday, as scheduled. The plan was for us to discuss an alternative to the gemcitabine, which was a terrible drug for me and which I am no longer taking.  But Dr. Lee had also referred me to a lung specialist, so I have two strings of appointments going here. When I saw him on Friday, he agreed that we need to know whether I have a heart problem or a lung problem before we make a decision about my next treatment regimen. Plus, I told him I was not willing to do another convention chemo drug right now--just too hard on me. My suggestion was to do a combo of Avastin, Herceptin, and Tykerb--all targeted therapies, all drugs I've had, but I've never had all three at once, only any two of the three, if that makes sense. I also want to have a go... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2406038 Tue, 12 May 2009 17:56:59 +0100 2406038 http://www.medworm.com/index.php?rid=2406025&cid=t_103630_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fside-effects-from-breast-cancer-treatment%2F When I complain to friends about brain functioning issues or eyesight changes due to breast cancer treatment, they generally look at me with the “I know” look and explain that it is all a part of aging. They feel that they experience it too and I just have to accept that it happens to everyone; that it is not because I had breast cancer. I am convinced though that I suffer from chemo brain and that is why my memory lacks and my cognitive functioning isn’t as acute as it once was. In addition, I have often complained of vision changes over the past several years and I am sure it is related to treatment as well. I have suspected that Tamoxifen may play a role. I, like many women my age need reading glasses, but I also have problems with light sensitivity and night vision. I went from a... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=2406025 Mon, 11 May 2009 18:56:57 +0100 2406025 http://www.medworm.com/index.php?rid=2399145&cid=t_103630_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fchemo-brain-and-stress%2F I’ve been focusing on stress a lot lately in this blog.  As if stress isn’t bad enough, couple it with chemo brain and I’m having a bad week! I have written about chemo brain often over the past three years of blogging. Those of us that experienced it after chemotherapy treatments are finding that there are lingering symptoms of fuzzy brain, forgetfulness and mixed up words and thoughts. At my middle age it’s easy to write it off to age, but because these symptoms assaulted me right after I went through chemotherapy, I have remained suspicious. These past months, maybe because I am managing the symptoms better, I found they were lessoning. Lately though as I have been dealing with stressful situations, I have found stress has exacerbated the cognitive problems. I have to wonde... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=2399145 Fri, 08 May 2009 17:37:13 +0100 2399145 http://www.medworm.com/index.php?rid=2387191&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2009%2F05%2Ftaking-care-of-my-body-in-2009-part-5.html Alternative title: "a mixed bag"Alternative title: "doritos do not make a healthy lunch"Alternative title: "time to bring in some support"As my first alternative title suggests, I have had some mixed success this month, in my quest to "treat my body as well as I treat my mind" in 2009.Let's review, shall we?1-Walk VIGOROUSLY for an average of one hour, five times per week (300 minutes a week).I did very well on this front, meeting my goal and exceeding it. I am especially pleased, given that I had such a terrible cold for a while. And I am very proud of the fact that I went for a long walk every day that I was at the Conference for Women Living With Advanced Breast Cancer (near Philly). I walked after checking in at the hotel, at the end of a long day on Saturday and organized a late check... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=2387191 Mon, 04 May 2009 18:27:00 +0100 2387191 http://www.medworm.com/index.php?rid=2382773&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F05%2Fwhy-i-love-my-doctor.html So, if you read my earlier rant about how much I hate gemcitabine, you'll know that I went in to my appt. with Dr. Lee today prepared to tell him that I wasn't going to do this drug anymore. But--and this is the reason I love him--Dr. Lee took the words right out of my mouth. "This isn't a good drug for you," is what he said. To which I replied that I agreed, and that I wanted to propose that we consider other options. I was dehydrated and dizzy, so I got IV fluids, and also Herceptin, which never bothers me, and made an appt. to go back in next Friday to discuss treatment options with Dr. Lee. That's also a reason to admire him, because he could tell that today was not a good day for me to have that conversation. I just felt too crummy. I took O... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2382773 Sat, 02 May 2009 01:32:45 +0100 2382773 http://www.medworm.com/index.php?rid=2382775&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F05%2Fi-hate-gemcitabine.html This gemcitabine (AKA Gemzar) is one sneaky mother of a drug!I got my third dose on Wednesday last week, about 10 days ago, and I thought that I was going to get through this one without the awful side effects. But no. Six whole days after getting the chemo, it hit me and it hit me hard. The symptoms? Nausea. Upset stomach. Diarrhea. Headache (although that could have been because my tummy was too upset to drink any coffee). And total fatigue. I've been in bed for more than 48 hours straight, sick as a dog. Now that I've crawled out of my cave on Friday morning, I'm supposed to go back this afternoon and do it all again. I don't think so. I've now had three doses of gemcitabine, and I've decided to throw in the towel on this one. I can't ... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2382775 Fri, 01 May 2009 18:13:42 +0100 2382775 http://www.medworm.com/index.php?rid=2376724&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F04%2Fgemcitabine-update.html I got my third dose of gemcitabine (also known as Gemzar) on Wednesday, and I've got to say we seemed to have tamed the beast. It really was no big deal this time--no thrush in my mouth like with the first two doses, and it never really "hit" me like it did with the earlier doses: No vomiting (thank god), no feeling of having been hit by a board. I really didn't notice much. Now Dr. Lee has cut my dose to 1200 mg (I think), and also gave me shots to boost both my red and white blood counts, and it seems to be the right decisions. I feel like this is manageable. I can do this. Now we wait for a few months and do more scans to see whether or not this treatment is actually doing me any good--that's the fun part!For those of you who are curious, my... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2376724 Mon, 27 Apr 2009 18:37:00 +0100 2376724 http://www.medworm.com/index.php?rid=2349560&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F04%2Fcancer-treatment-for-dogs.html The dog next door is doing chemo. The dog, a sweet black lab-mix who looks a lot like Connie, has a tumor near her eye. Her owners did a lot of research and decided to put her on an oral chemo drug. So far, she's doing really well. A few weeks ago, I overheard part of a conversation about chemotherapy, and I assumed that the two women were discussing the treatment a friend or relative was getting. It was only after eavesdropping for a good five minutes that I realized they were discussing a dog's chemo schedule!Dogs do get cancer, of course. In the old days, when my father was practicing veterinary medicine, the only treatment for cancer in dogs was surgery--you cut out the tumor and hoped for the best. A headline in the Science Daily caught my eye: Veterina... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2349560 Sat, 18 Apr 2009 18:49:07 +0100 2349560 http://www.medworm.com/index.php?rid=2326683&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2009%2F04%2Fshape-im-in.html Chemo has left me uninspired.Here is a link to a story ("Cancer labs no closer to national standards: Despite fresh doubts about tests in B.C. and damning report on Newfoundland scandal, efforts to set quality benchmarks are stalled.") from today's Globe and Mail that made me grumpy.The quality and accuracy of cancer testing can be so uneven and no province has been exempt from error. The feds don't feel they need to take any responsibility for resolving the problem:Federal Health Minister Leona Aglukkaq declined to be interviewed for this story, but her press secretary said in an e-mail the federal government will not become involved because "the regulation of pathologists and laboratories is a provincial and territorial responsibility."If I weren't already feeling queasy, I would be no... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=2326683 Wed, 01 Apr 2009 20:33:00 +0100 2326683 http://www.medworm.com/index.php?rid=2249060&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F03%2Ffrom-my-swish-sister.html Yvonne, one of my readers, sent me encouraging messages about my sore mouth after just one dose of gemcitabine. She wrote: "I feel your pain!!! ...In fact, I am rinsing along with you this week!!"Now, it is really true that misery loves company, and I felt better knowing that I was not swishing alone. Thus, the Swish Sisters. That's us. And anyone else who needs to join the club. Then today, Yvonne told me more of her story. I'm just going to quote the whole thing, and also post a great photo of her with her daughter at the Mad Hatter Fund Raiser her friends threw for her. What a great idea!Greetings from Vancouver, British Columbia. Just wanted to drop you a line and say hello. I stumbled on your blog last October when I was in the throws of my re... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2249060 Sat, 07 Mar 2009 18:58:39 +0100 2249060 http://www.medworm.com/index.php?rid=2240541&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F03%2Fgemcitabine-blues-whacked-my-counts.html Once you've lived with cancer for awhile, you find yourself talking like the medical folks do. Words like "counts," "meds," and so on have become part of my vocabulary, even though my training as a journalist was to avoid jargon and put things into everyday language when I write. Too late. Anyway, "counts," are blood counts--red, white, platelets, and so on. And today, one week after getting my first dose of gemcitabine, my counts were whacked. "Whacked" is NOT a medical term, but it means that my counts were all in the danger zone--too low to get chemo, and too low to protect me from infections from otherwise innocent bystanders. Low enough to make me feel really tired, which I do. I have to admit, I felt so crappy ... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2240541 Fri, 06 Mar 2009 23:14:55 +0100 2240541 http://www.medworm.com/index.php?rid=2241118&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2009%2F03%2Fliving-with-it.html I have just come back from an echo-cardiogram appointment (I have regular echos to make sure that Herceptin isn't damaging my heart) or rather what I thought was an echo appointment. It had previouslybeen scheduled for Thursday, February 26 (when I was travelling to Dallas for the Conference for Young Women Affected By Breast Cancer) and I'd had to reschedule. I had entered the appointment (I use Google Calendar) for Friday, March 6 at 3pm. It turns out the appointment is for Tuesday, March 10th, at 3pm.Since I was told about the appointment over the phone, I have no idea where along the channel of communication the mistake was made - as it came out of the caller's mouth, or as it went through my (increasingly sieve-like) brain. I guess it doesn't really matter, though (and next time, I wi... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=2241118 Fri, 06 Mar 2009 22:09:00 +0100 2241118 http://www.medworm.com/index.php?rid=2240542&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F03%2Fmy-chemo-schedule-a-clinical-trial-of-one.html I had a question from a reader about my chemo schedule, and I agree, it's hard to understand. So I thought I'd try to outline it here, briefly. (Well, maybe not so briefly...)I'm not on any kind of standard regimen--Tykerb is normally given with xeloda, for example, but I can't tolerate xeloda, so that's out--I'm on an out-there-past-the-clinical-trials, made-just-for-me regimen that my doctors devised. That's what happens when you have had a lot of chemo, and also when you survive a long time with metastatic disease. You get your own personal clinical trial of one. I know other women in the same situation. The DrugsTykerb--comes only in pill form. The standard dose is fives pills per day, all taken at the same time. I can't tolerate that dose, s... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2240542 Fri, 06 Mar 2009 17:52:20 +0100 2240542 http://www.medworm.com/index.php?rid=2240545&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F03%2Fwarning-this-is-disgusting.html I stuck out my tongue in front of the mirror yesterday morning, and what did I see?Red sore patches, with whitish borders. My tongue looks like someone beat it up, and that's how it feels, too. So, being no dummy, I called my oncologist's office and talked to one of his nurses. She asked a few questions, and said she would call in a prescription for a rinse for me to use. I think she said it is probably a yeast infection in my mouth. Now this is really great. NOT. I've only had one dose of my new chemo drug, gemcitabine, and I already feel like crap and have a roadmap to somewhere disgusting in my mouth. I took Connie the Wonder Dog and walked to the drugstore to pick up my prescription yesterday afternoon. The walk helped. Being out in the fresh air almost al... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2240545 Thu, 05 Mar 2009 18:01:40 +0100 2240545 http://www.medworm.com/index.php?rid=2222376&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F02%2Fgemcitabine-blues-reading-about-my-new-poison.html As I mentioned the other day, it's past time for me to get my ducks in a row re my new treatment, which is scheduled to start Friday, which is tomorrow. So I went and found the research that Teri, the Cheeky Librarian, had done for me several weeks ago, and I read my way through that. And I had an appointment with my therapist yesterday, and we discussed all the issues, including the fact that I'll have to go in for treatment once a week with the gemcitabine, and I don't like that, for a number of reasons. And we worked our way--with detours to talk about John, who died this week, and Debutaunt, who is not doing very well--to the Big Question: If I didn't do the gemcitabine, what would I do?Now there are other drugs out there, but this is the one my oncologists ... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2222376 Thu, 26 Feb 2009 18:29:51 +0100 2222376 http://www.medworm.com/index.php?rid=2260483&cid=t_103630_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Flove-is-greater-than-breast-cancer%2F On my vanity sits a beautiful silver box embellished with hearts and rhinestones. On top of the box is an oval plaque engraved with the words, “I’ll always be your baby boy.” A secret nickname follows the inscription. This is the Christmas gift I got from my youngest son, and the inscription alludes to a passage from a favorite book I used to read him when he was very young. The nickname is one that only I call him, one that he usually rolls his eyes at. After opening his presents Christmas morning, my son left the room for a few moments and returned with a beautifully wrapped present that he handed sheepishly to me. The moment I opened the box, I began to cry, it was so beautiful and truly unexpected. My son also cried and hugged me. He later told me that he understood at that momen... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=2260483 Fri, 13 Feb 2009 17:43:44 +0100 2260483 http://www.medworm.com/index.php?rid=2113869&cid=t_103630_136_f&fid=37852&url=http%3A%2F%2Fdonnatrussell.com%2F2009%2F01%2F18%2Fshoot-your-wig-pop-a-cap%2F I lost my hair during chemotherapy seven years ago. But I hated my wig, which mimicked the hairstyle of my repellent 50-something teacher from grade school. (”My name is Mrs. Green. Like paint! Ha ha ha ha!”) So I decided I would stick to hats and caps. But I was addled and sad and scared when I went hat shopping, and I made some poor choices. Learn from my mistakes. A few tips: 1) Your hair goes with whatever you wear. Hats do not. While the colorful prints are tempting (and it’s fun to have a few) keep in mind that most will clash with your clothes unless you stick to very neutral colors. I have brown hair, so I enjoyed my leopard-print beret. But most of the others collected dust. 2) There are lots of synthetic hats for sale, but most don’t breathe, and you can g... Donna Trussell blogs http://www.medworm.com/rss/comments.php?id=2113869 Mon, 19 Jan 2009 04:18:22 +0100 2113869 http://www.medworm.com/index.php?rid=2101714&cid=t_103630_136_f&fid=36469&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2Fespeciallyheather%2FEH%2F%7E3%2F510221585%2F How you spend your time is more important than how you spend your money. Money mistakes can be corrected, but time is gone forever. . I have to admit that I have spent way too much time stressing over this blog lately. Not that I have spent too much time investing in your lives, because [...] (Source: Especially Heather) Especially Heather blogs http://www.medworm.com/rss/comments.php?id=2101714 Mon, 12 Jan 2009 22:24:16 +0100 2101714 http://www.medworm.com/index.php?rid=2087036&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2009%2F01%2F2008-in-review-books-i-read.html We got back last night from a few days visiting family and friends in Toronto. I am happy but wiped out. I always feel this way after the holidays, a couple of weeks of over-indulgence, lots of socializing and the kids home all the time (although Grandma did take 5 year old D. home with her after Christmas. He got to spend a few days alone with his grandmother and T. and I got to SLEEP IN FOUR MORNINGS IN A ROW).I also wrote and submitted the major assignment for the fiction writing course I've been taking - a 3,300 word outline of a novel (I am feeling very proud of myself but also a little daunted).It was all great fun (at least most of the time) but didn't leave much time for review and introspection. So I hope you'll all bear with me as I engage in a little of both over the next few da... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=2087036 Wed, 07 Jan 2009 16:44:00 +0100 2087036 http://www.medworm.com/index.php?rid=2078340&cid=t_103630_136_f&fid=36162&url=http%3A%2F%2Fmyelomablog.com%2F2009%2F01%2F03%2Flyrica%2F My doc gave me an rx for Lyrica a few weeks ago to help with the neuropathy.   I posted on the mailing list to get an idea of what kinds of side effects others had experienced when they used it. Mostly, I’d say they were not very positive responses.  Almost everyone quit taking Lyrica because of side effects such as edema. One patient’s experience was pretty severe. I won’t be taking it.  My PN isn’t present 100% of the time (although the numbness is).  I’ll just take tramadol or some other medication PRN. The issue is that I plan on making a very long trip out of the country in the spring.  The PN is worse when I can’t either be moving or have my legs up, so I was concerned about taking an extremely long flight.  It might just be best for me to b... beth's myeloma blog blogs http://www.medworm.com/rss/comments.php?id=2078340 Sat, 03 Jan 2009 23:49:13 +0100 2078340 http://www.medworm.com/index.php?rid=2035883&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2008%2F12%2Fevery-time.html When I turn the corner after chemo, I always want to do EVERYTHING.Read a book.Walk my dogs.Write.Organize my house.Cook something.Go shopping.Knit (or finish languishing projects).Get caught up on my email.You'd think I would have been doing some of those things when I was recovering and I did, but it's just not the same when you feel like crap.I had my first cup(s) of coffee this morning since chemo. And it wasn't even my usual half-caf. I want to do EVERYTHING NOW. And I don't know where to start.So maybe I'll just sit on my couch for a while and listen to my kids squabble over pizza. (Source: Not just about cancer) Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=2035883 Sat, 13 Dec 2008 16:34:00 +0100 2035883 http://www.medworm.com/index.php?rid=2027259&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2008%2F12%2Fsnippets-from-around-web.html I had chemo yesterday and spent today feeling lousy, restless and out of sorts. After finishing up some homework for this online writing course I'm doing, I've pretty much got nothing left for the blog.This is why I love the internet! Here are some of the posts I've been reading and thinking about over the last little while.1. This is what Ottawa looked like today. And today was the first day of a city-wide transit strike. A good day to be stuck in bed, I think. One poor guy was interviewed after walking for two and a half hours and he still had a ways to go. And then a full day of doing electrical work. I hope he caught a ride home with someone.2. Anyone with experience dating folks with young kids? Blondie is asking for advice.3. The Maven posted this great video the other day of her tod... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=2027259 Thu, 11 Dec 2008 00:41:00 +0100 2027259 http://www.medworm.com/index.php?rid=2013937&cid=t_103630_136_f&fid=36162&url=http%3A%2F%2Fmyelomablog.com%2F2008%2F12%2F04%2Fsend-positive-thoughts%2F I’ve been writing to Suleyman, who is in the Netherlands and is undergoing an allo stem cell transplant to treat and hopefully cure his leukemia.  He had to undergo some high dose chemo (busulfan and cyclophosphamide). He’s having a rough time, so he needs some healing thoughts sent his way.  The stem cells from his brother will take about three weeks to engraft.  I hope I can get him to send a picture! (Source: beth's myeloma blog) beth's myeloma blog blogs http://www.medworm.com/rss/comments.php?id=2013937 Thu, 04 Dec 2008 23:28:33 +0100 2013937 http://www.medworm.com/index.php?rid=2005959&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2008%2F12%2Fday-my-life-changed.html I had an echocardiogram today. They are a pretty routine part of my life; I have them every few months to make sure that the Herceptin isn't damaging my heart. So far, so good.It's kind of boring lying there, so I started to play a little game with myself. When I lay down at the beginning of the test, my resting hear rate had been 65 bpm (beats per minute), when I worried about my results, I noticed that it had shot up to 75 bpm (I could also see on the screen that my heart was whooshing away but I couldn't tell whether it was doing it's job efficiently). I took a few deep breaths and my bpm dropped again. I remembered that I have only bought one Xmas present and my rate went back up into the 70s. Up and down it went (I hope that I didn't affect my results by doing this). And then it occur... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=2005959 Wed, 03 Dec 2008 04:00:00 +0100 2005959 http://www.medworm.com/index.php?rid=2006556&cid=t_103630_136_f&fid=36032&url=http%3A%2F%2Fblog.healthtalk.com%2Fbreast-cancer%2Flife-with-breast-cancer%2Flearning-to-live-with-chemo-brain%2F I had the best Thanksgiving holiday. I told you last week that we were spending Thanksgiving Day with my in-laws and we had a wonderful day. Sister came the next day for the remainder of the weekend, and we had so much fun. On Sunday, I had a brunch so that my friends could meet sister and her husband. They loved her, of course, and Sister felt blessed to have the opportunity to meet them. I woke up this morning fulfilled and happy. The greatest thing about this weekend was that I now get to benefit from all the work I did to get ready for my guests; my house was clean and clutter-free. It felt great to get ready for the day and not feel inundated with all the piles of stuff I needed to go through. Even though I put off sorting through my piles, they were a relentless reminder that my task... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=2006556 Mon, 01 Dec 2008 22:23:45 +0100 2006556 http://www.medworm.com/index.php?rid=1996194&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2008%2F11%2Fstill-throwing-up-with-tykerb-.html On Wednesday I had one of those conversations with my oncologist ... one of those conversations that make life with cancer so much fun. Not a conversation that I wanted to have on the day before a holiday, of course. Not that I had much choice. The conversation was about the fact that I am still throwing up, once or twice a week, fairly violently, and we aren't sure why. So, if I remember the conversation accurately, the choices are:--This is a side effect of the Tykerb, even though I took it for nine or 10 months without throwing up.--I'm not throwing up because of my TREATMENT, but because of my DISEASE. We did a brain MRI recently, and that was fine, but there is the possibility that my cancer has moved into the fluid around my brain and spine, and that could make me... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1996194 Sat, 29 Nov 2008 06:29:41 +0100 1996194 http://www.medworm.com/index.php?rid=1985016&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2008%2F11%2Fmy-brain-is-sieve.html I was really looking forward to my book club tonight. I even tweeted about my excitement.We read Run, by Ann Patchett. I really liked the book but I was especially looking forward to getting out and seeing my friends.I really wanted a beer with dinner (we were having pizza) but I passed because there is always wine at book club. I even got my spouse to pick up a bottle this afternoon, so that I could contribute.I gathered up my purse and my knitting. I hadn't organized a ride, so I got ready to call a cab. I looked up the host's email to confirm her address and because I wanted to make sure that I was planning on going to the right house. My memory is not what it once was.I was right about the house but wrong about the date.My book club is November 30th.My kids felt bad for me because I to... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=1985016 Mon, 24 Nov 2008 02:39:00 +0100 1985016 http://www.medworm.com/index.php?rid=1969007&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2008%2F11%2Fwriting.html This was actually taken on chemo day but it kind of sums up what I feel like doing. Note the bed, the book and the laptop. The only thing missing is a great big chocolate bar.And yes, that is the world's meanest cat, all cuddled up with me. Don't be fooled by appearances. One false move and he'd slit my throat.I've actually been doing some non-blog writing today, so not much left over for this space. Please bear with me. There will be a more substantial post one these days, I promise. (Source: Not just about cancer) Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=1969007 Mon, 17 Nov 2008 17:53:00 +0100 1969007 http://www.medworm.com/index.php?rid=1963850&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2008%2F11%2Fcytoxan-id-forgotten.html Somewhere in the state of Utah...It's been something like 18 months since I've been on a conventional chemo drug--one which kills all fast-growing cells rather than a "targeted therapy" such as Herceptin or Tykerb--and I had honestly forgotten what it's like. Two days into my new treatment regimen, which added oral cytoxan to the mix (Tykerb, Herceptin, zometa), and I woke up with puffy eyes, a pale green face, an upset tummy, and a swimmy head. Not the best state of affairs to head out on a road trip.This morning, Day Two of The Great Road Trip (Seattle to Mesa Verde in Colorado), I decided to skip the cytoxan. I also skipped my Tykerb last night, because my stomach was so upset. I took the Tykerb tonight, but I'm debating waiting until I'm back home in... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1963850 Mon, 17 Nov 2008 05:08:14 +0100 1963850 http://www.medworm.com/index.php?rid=1955140&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2008%2F11%2Fherceptin-tykerb-and-cytoxan-oh-my.html I met with Dr. Lee on Friday to make a decision about my new treatment regimen. I'd seen my radiation oncologist, Dr. Eulau, on Tuesday to discuss whether or not I need radiation therapy this time around. I've done radiation FIVE times now, so I was happy to hear that he doesn't think I need to do it again now. There are some tumors in my spine that will need close watching, but, at least for now, they aren't much of a danger to me. I also consulted with Dr. Livingston by e-mail during this period of the "scan dance," as Teri, the Cheeky Librarian, dubbed it, and he gave me his advice. So I thought we were all on the same page, especially about the question of whether or not I should have a biopsy of the new tumor that popped up in my right... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1955140 Wed, 12 Nov 2008 21:16:19 +0100 1955140 http://www.medworm.com/index.php?rid=1947334&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2008%2F11%2Fby-popular-request.html Photos of the puppy. Or as the vet calls her, my "hairy little monster."It is very difficult to get a good photo of a black dog. However, I discovered that a good camera can really make a difference.Seriously in need of a grooming.I was holding a treat in the air. I really love this camera.She has a really long tongue.J-Dog was unimpressed.I spent the last couple of hours trying to come up with a post for NaBloPoMo. I also needed to re-take some photos for the book. Instead, I took photos of my dogs and turned them into a post.Although, now I just want to photograph everything I own with this camera.Too bad I have chemo tomorrow. Although maybe I'll take photos of that, too. (Source: Not just about cancer) Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=1947334 Mon, 10 Nov 2008 03:19:00 +0100 1947334 http://www.medworm.com/index.php?rid=1945683&cid=t_103630_136_f&fid=37852&url=http%3A%2F%2Fdonnatrussell.com%2F2008%2F11%2F09%2Fpssssstim-on-postsecret%2F Look quick. He puts new ones up every Sunday. (Must have been the steroids.) PostSecret is an “ongoing community art project” started by Frank Warren in 2005. This card was my first submission. Posted in Cancer, Writing   Tagged: art, chemo, postsecret    (Source: Donna Trussell) Donna Trussell blogs http://www.medworm.com/rss/comments.php?id=1945683 Sun, 09 Nov 2008 16:06:11 +0100 1945683 http://www.medworm.com/index.php?rid=1911655&cid=t_103630_136_f&fid=36032&url=http%3A%2F%2Fblog.healthtalk.com%2Fbreast-cancer%2Flife-with-breast-cancer%2Fwhat-to-buy-someone-going-through-breast-cancer%2F What is the best gift to give someone who has just been newly diagnosed with breast cancer? Flowers usually work for everybody. A precious friend sent flowers as soon as I told her about the diagnosis. My sister–in-law sent them to my house as soon as I got home from surgery. While most women think that spending money on something that will not last is a waste, Dr. Phil listed smelling flowers among one of the best ways to fight stress; it causes you to stop and take a deep breath. I love flowers, and they are appropriate for someone home from surgery and limited in mobility, but I wouldn’t suggest flowers for anyone undergoing chemotherapy as some smells can increase nausea. To this day, I cannot buy particular scented hand soap because the smell seemed too intense and triggered nause... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=1911655 Mon, 27 Oct 2008 23:38:13 +0100 1911655 http://www.medworm.com/index.php?rid=1886459&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2008%2F10%2Fseven-more-things.html I've been tagged.By Mom2Amara, who I tagged for this same meme last year.Here are the rules:Post the rules on your blog.Write 7 random things about yourself.Tag 7 people at the end of your post.Pass on the tag.I am not sure if there are actually seven things I have not already shared on this blog but, as this seems like a good subject for a post-chemo Friday, I will give it a shot.1. I love the way my dogs smell. I stick my face in their fur sometimes and inhale.2. I am afraid of heights.3. My greatest insecurity is that the people I love will stop loving me.4. Laughter is very important to me. I credit my mom for my goofy sense of humour.5. I have been to every Canadian province and territory except Saskatchewan and Nunavut.6. My first two bikes were red. I loved them very much. Both were... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=1886459 Fri, 17 Oct 2008 17:12:00 +0100 1886459 http://www.medworm.com/index.php?rid=1811689&cid=t_103630_136_f&fid=37852&url=http%3A%2F%2Fdonnatrussell.com%2F2008%2F09%2F21%2Fcancer-is-so-limited-i-beg-to-differ%2F If you’ve ever googled cancer poems, you’ve come across this: What Cancer Can Not Do by Anonymous Cancer is so limited… It cannot cripple love It cannot shatter hope It cannot corrode faith It cannot destroy peace It cannot kill friendship(s) It cannot suppress memories It cannot silence courage It cannot invade the soul It cannot steal eternal life It cannot conquer the spirit.   Ya gotta love the attention to detail on “friendship(s).” A copyeditor must have shown up somewhere on the Internet daisy-chain. Cancer is so limited? What bullshit! Miss Anonymous, I want to have cancer on your planet. On my planet, cancer acts like a serial killer who’s got plenty of ammo and is just getting started. It cannot cripple love. Tell that to the woman whose boyfr... Donna Trussell blogs http://www.medworm.com/rss/comments.php?id=1811689 Sun, 21 Sep 2008 05:29:29 +0100 1811689 http://www.medworm.com/index.php?rid=1811690&cid=t_103630_136_f&fid=37852&url=http%3A%2F%2Fdonnatrussell.com%2F2008%2F09%2F20%2Fthe-oncologist-and-her-ghosts%2F                     The Oncologist and Her Ghosts by Donna Trussell Her nightmares are blizzards. Wind swallows words, and faces freeze beneath ice and snow. She wakes with a start. She rises, lies down, comforts herself with memories of another time before cities, before textbooks before patients who smiled and joked and died. No matter what she did, they died. She recalls a night on her father’s farm. Southern gusts swayed the moon-tipped trees and above her were the only gods she knew. She made a pact: The stars would protect her and she would save lives. She was just a child then, and even in Nebraska summer seemed endless and full of promise. First published in Chance of a Ghost Included in What’s Right About What’s Wrong   Note: My poems are often just as... Donna Trussell blogs http://www.medworm.com/rss/comments.php?id=1811690 Sat, 20 Sep 2008 18:54:41 +0100 1811690 http://www.medworm.com/index.php?rid=1802793&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2008%2F09%2Fwaiting-game.html I am waiting for results from yesterday's CT scan. My oncologist said that I should call him for results after five days, so I am going to start calling on Friday (it's only four days post-test but what have I got to lose by calling?).I did have bloodwork done yesterday and was very relieved to see that all my liver functions are well within the range of normal. I actually startled the nurse who was hooking me up for chemo by giving a little yelp of pleasure.It is still possible to have tumours on the liver (or nearby) and have normal liver functions. However, abnormally high liver functions can be a sign of a problem.And I will embrace every indication that all is well.I have a new post up (I wrote it on Monday) at MyBreastCancerNetwork.Com. It's about how hard it is to play the waiting g... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=1802793 Wed, 17 Sep 2008 21:18:00 +0100 1802793 http://www.medworm.com/index.php?rid=1788777&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2008%2F09%2Fcircular.html Am I freaked out because I can feel a stitch or am I feeling a stitch because I am freaked out anxious about my CT next week and what it might reveal?Inside my head is not a fun place to be, today.These are the facts:Scarring causes tightness which can make me feel a bit of a stitch.I have been exercising hard and felt nothing.But as I type this, I feel a dull ache.I cannot tell if my liver is swollen because I a have too much belly fat (and lymphedema) and an inadequate sense of my own anatomy.If I press really hard, the area where I think my liver is, hurts. But if you press hard enough on any part of the body, it hurts.CT scan and blood tests on September 16, right before chemo. I will have the blood tests back on the same day but must wait a few days for the CT results.Until then, deep... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=1788777 Fri, 12 Sep 2008 19:11:00 +0100 1788777 http://www.medworm.com/index.php?rid=1728300&cid=t_103630_136_f&fid=37852&url=http%3A%2F%2Fdonnatrussell.com%2F2008%2F08%2F23%2Fits-cancer-now-what%2F Your first and most fervent wish — for the biopsy to be negative — did not come true. Life goes on. Schadenfreude is your new best friend You may think you’ll take advantage of your “down time” during treatment to catch up on classics you’ve always wanted to read.  Mr. Personality, hosted by Monica Lewinsky Au contraire! The brain-fog of chemo will prevent you from understanding anything more complicated than a menu.  My guilty pleasure of reality TV was just the ticket. For the record, only the first seasons of reality shows are worth watching. That’s where the biggest train wrecks are.  If a show becomes a hit, sponsors start meddling with the casting and scripting to make the show palatable to a mainstream audience.  Gone are the religiou... Donna Trussell blogs http://www.medworm.com/rss/comments.php?id=1728300 Sat, 23 Aug 2008 18:56:16 +0100 1728300 http://www.medworm.com/index.php?rid=1723533&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2008%2F08%2Ffood-meme.html Recovering from chemo always provides me with an excuse to spend time online getting caught up on the blogs that I love. I am stealing this meme from Average Jane, who also posted the following instructions:1) Copy this list into your blog or journal, including these instructions.2) Bold all the items you’ve eaten.3) Cross out any items that you would never consider eating.4) Optional extra: Post a comment at www.verygoodtaste.co.uk linking to your results.It took me a while to do (I cut myself some slack when I am in my jammies for days on end) but it was fun.And I have the following observations:1- I don't know as much about food as I thought I did. I had to look a lot of these things up.2-I am not as adventurous as I was in my younger days. Not sure that I would eat frogs' legs now. O... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=1723533 Thu, 21 Aug 2008 21:05:00 +0100 1723533 http://www.medworm.com/index.php?rid=1720256&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2008%2F08%2Fmedicare-tyke-1.html Today was the deadline I gave myself for taking the next steps in finding a way to afford Tykerb--the drug that keeps me alive--while on Medicare. So, after feeding the dog, making coffee, and puttering in the garden for a few minutes (clearing up after yesterday's rain, but really procrastinating, because who LIKES to deal with health insurance problems?), I finally gathered up all the paperwork that I needed: * My Medicare card * The letter confirming my supplemental policy with WSHIP (no card yet) * The letter confirming my Medicare Part D prescription drug plan (also no card yet) * Letters and forms for TykerbCares, which dispenses the drug * Recent letter from Accredo pharmacy, a mail-order speciality pharmacy that had been sending me my Tykerb * My oncologist's phone number ... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1720256 Wed, 20 Aug 2008 18:59:23 +0100 1720256 http://www.medworm.com/index.php?rid=1717269&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2008%2F08%2Fim-to-busy-to-have-cancer.html I have far too much on my plate right now to go to chemo.But I must.See you on the other side.Meanwhile, I have a post up at MyBreastCancerNetwork.Com. (Source: Not just about cancer) Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=1717269 Tue, 19 Aug 2008 11:55:00 +0100 1717269 http://www.medworm.com/index.php?rid=1713826&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2008%2F08%2Fmedicare-tykerb.html Now that I'm on Medicare, I'm trying very hard not to explode into little bitty pieces with frustration as I try my best to get Medicare to pay for the treatment that keeps me alive. The most important drug that I take now is Tykerb, which I've been on since last Thanksgiving Day. With the Tykerb, my tumor markers have dropped into the normal range, and stayed there for nine months. (There is still some active cancer, three small tumors, one in my spine and two in my pelvis, but they aren't any danger to me right now.) Tykerb only comes in pill form, however, which has been part of the problem with Medicare. I have Medicare Parts A and B, which costs me about $100/month. I also have a supplemental policy through WSHIP, which is several hundred dollars more a month, and a prescription... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1713826 Mon, 18 Aug 2008 19:14:59 +0100 1713826 http://www.medworm.com/index.php?rid=1711715&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2008%2F08%2Fhair-today.html The first time I went bald from chemotherapy was traumatic—I cried, I raged, I agonized over the way people, total strangers, responded to my bald head: with pity. That was late 1998 and early 1999, and I was on chemotherapy with Adriamycin after a mastectomy. The second time, a year or so later when I had a local recurrence, I had fun with it. I decorated my head with a henna tattoo and flaunted my baldness. That time, the cause was the chemo drug Taxol, which I took for 12 weeks along with radiation to my chest wall. The third time was about five years ago, during Younger Son's freshman year of high school, and I was back on Taxol, in combination with Herceptin and a couple of other drugs. I wore a wig for the first and only time, as a concession to the sensibilities of my younger ... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1711715 Sun, 17 Aug 2008 19:22:02 +0100 1711715 http://www.medworm.com/index.php?rid=1708846&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2008%2F08%2Ftykerb-with-foo.html Several people have e-mailed me or left comments on my blog asking about taking Tykerb with food. Tykerb is one of several drugs I take to keep my metastatic breast cancer in check, and it works well for me. But, as for so many other women, it does cause an upset tummy and diarrhea. That's especially hard to take during hot weather, when I get dehydrated as a result. I've had to have IV fluids about three times this summer because of dehydration from the Tykerb. So when I saw Dr. Lee today I asked him about taking the Tykerb with food instead of on an empty stomach as I had been told to do. Dr. Lee said he wants me to continue to take it as directed, but he also said to go ahead and research it and report back to him. If you're on Tykerb and have been told it's OK to take with food,... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1708846 Fri, 15 Aug 2008 03:45:57 +0100 1708846 http://www.medworm.com/index.php?rid=1655553&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2008%2F07%2Famazing-encounters-part-1.html I met Grover! Sesame Street had a suite at the hotel that was hosting the BlogHer conference. They were promoting their new web site, which my son loves. The real Grover and the real Abby (she came after my Sesame Street time but she's really nice) were present and anyone who signed up could take home a DVD of herself on Sesame Street!The atmosphere in the room was absolutely giddy. And I lost count of the number of moms who laughed as they insisted, "I'm telling them that I'm doing this for my kids."Which is exactly why I did it. I swear.I have to say that I am struck by this photo. Can you tell how happy I was right at that moment? Seriously, meeting Grover turned me into a giggling groupie.I need to tell you all about two other amazing folks I met when I was in San Francisco. And neithe... Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=1655553 Fri, 25 Jul 2008 19:09:00 +0100 1655553 http://www.medworm.com/index.php?rid=1652419&cid=t_103630_136_f&fid=35316&url=http%3A%2F%2Fnotjustaboutcancer.blogspot.com%2F2008%2F07%2Fsafe-sound-happy-and-tired.html I had a wonderful time at BlogHer '08.I had chemo the day after my return, though and am still recovering. Some longer posts are owed to you all very soon.Meanwhile, here is a pic of me, BlogHer co-founder Lisa Stone and wonderful Babz (Babz and I, who had never met in person, took to each other like two old friends).I had to snag this photo from Babz, since I took exactly one photo all week end. It's of me and an international celebrity and I will post that tomorrow. (Source: Not just about cancer) Not just about cancer blogs http://www.medworm.com/rss/comments.php?id=1652419 Fri, 25 Jul 2008 00:39:00 +0100 1652419 http://www.medworm.com/index.php?rid=1593710&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2008%2F07%2Favastin-and-tyk.html I'm on both of these drugs to treat my metastatic breast cancer (also zometa), so I perked up when Teri, the Cheeky Librarian, send these headlines my way. It's basically the old--"Is it worth the cost?" debate, which is always a question worth asking, but at the same time, the answer is going to be different if the patient who may not get access to the drug, is you, or your mother, or some abstract unnamed woman who your taxes are paying to support. The stories on Avastin are saying that the drug is not all that effective, and it is certainly expensive, although maybe these headlines in the New York Times and elsewhere will persuade Genentech to cut the price, but one thing they may not be considering--most, if not all of us, get Avastin in combination with other drugs. And in combina... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1593710 Mon, 07 Jul 2008 17:56:56 +0100 1593710 http://www.medworm.com/index.php?rid=1556188&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2008%2F06%2Ffridays-treatme.html In case you haven't been paying attention to the weather in Seattle (and why should you?), we have been having a heat wave. A "heat wave" by Seattle standards means temperatures in the high 80s, which melts Seattleites right down to their Tevas. (A perfect day in Seattle is 72--cool enough to play tennis or ride a bike.) As a result of this heat wave, I've had to water my garden twice a day, and I've been picking a quart of strawberries every morning. (And eating a cup or more, every day. Yum, tasty antioxidants.) Jam is coming soon. I decided to take a weekend off from the keyboard, which means I am even further behind than I was last week ... But I had a great weekend: Car Guy fixed the leaking shower upstairs in the Teenager Suite (I helped), and yesterday we went out to do the t... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1556188 Mon, 30 Jun 2008 19:59:48 +0100 1556188 http://www.medworm.com/index.php?rid=1556549&cid=t_103630_136_f&fid=36032&url=http%3A%2F%2Fblog.healthtalk.com%2Fbreast-cancer%2Flife-with-breast-cancer%2Fcancer-strikes-my-home-again%2F Last week I got the results for all of the tests I went through because of a concern over bone pain in my lower back. I was overjoyed to learn that I am totally cancer free! The tests showed that the pain is due to a tear in my lumbar disk. My husband, friends and family were also very happy that we weren’t facing anything more serious. The happiness lasted for about five hours. My husband, who for my sake is vigilant with his health and has annual checkups, received a call from his doctor asking him to come in immediately for an appointment. My husband advised me that the urgency was due to a result on his annual tests. We now know… my husband has been diagnosed with prostate cancer. Another round of cancer in my family has me dealing with an overwhelming combination of emotions f... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=1556549 Mon, 30 Jun 2008 18:55:31 +0100 1556549 http://www.medworm.com/index.php?rid=1552025&cid=t_103630_136_f&fid=36032&url=http%3A%2F%2Fblog.healthtalk.com%2Fbreast-cancer%2Flife-with-breast-cancer%2Fchemotherapy-induced-fears%2F Fears are like nightmares; they loom bigger in the dark. So I figure the best way to deal with your fears is to take them out into the light where you can have a better look and face them head on. One of those looming fears for me has been the possible side effects from chemotherapy. My father, who had chemotherapy for non-Hodgkin’s lymphoma, survived the lymphoma only to succumb to chemo induced leukemia. At that point there were no treatment options available to combat the leukemia. I have a real fear of developing a non-treatable condition from having been exposed to such strong chemicals during treatment. I have asked my oncologist about it, but the response has been vague, probably because there is not a lot of information available for the long term effects. I had three types of ch... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=1552025 Fri, 27 Jun 2008 15:23:32 +0100 1552025 http://www.medworm.com/index.php?rid=1499814&cid=t_103630_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2008%2F06%2Fboycott-clinica.html Here's a question: Should we consider boycotting clinical trials until the FDA sees sense on the off-protocol issue? Don't know what I'm talking about? Read these two posts, and then post a comment below and tell me what you think. Censorship Controversy at ASCO ASCO Controversy: The Abigail Alliance Responds Remember, they (drug companies and cancer researchers) can't do it without us (cancer patient guinea pigs). Because the law says that no new cancer treatment can be used until it's tested on human subjects. Again, that's us. The public has been very slow to get this, and participation rates in clinical trials are very low. (See: Soapbox No. 4: NIMBY to the Max) In general, I support participation in clinical trials, and I've taken part myself several times over the almost 10 ye... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1499814 Sat, 07 Jun 2008 17:43:20 +0100 1499814