<p>You’re half way through!!! And you have energy…you are a fighter. When I was going through I counted the hours left for the chemo infusion. Somehow it made the time seem to go by faster. (And I know several women who refused to finish treatment. And although they are still ok, I don’t understand that thought process.)</p>
<p>It is interesting though about what doctors advocate (or not) about diet during treatment. My doctor said that any meat was fine as long as it didn’t have added growth hormones. I was allowed to eat salad and sushi, which is generally forbidden. I couldn’t touch poultry, but red meat…yup.</p>
<p>Sunrise,
You are so right about becoming an advocate for yourself! I learned this when I & my kids developed some serious chronic health issues about 10+ years ago. I am convinced my advocacy was key to allowing us to defy all odds and live full and active lives. </p>
<p>It is excellent that you keep informed, exercise and have resources to help you, including the friend who will help you understand your scan results. It’s great that your treating doc keeps up by attending these conferences. Unfortunately, there are many docs who for various reasons DO NOT attend much continuing ed and have a hard time keeping up.</p>
<p>Keep doing all the great things you are–you are clearly a thriver! You are setting an excellent example to your kids, family & loved ones of how to fight for what is important and be an active partner to optimize your health!</p>
<p>Twice in the past few months I have mentioned something I read (the latest research on something) to a doctor and they both pooh-poohed it. One of them told me, “Stop reading!”</p>
<p>Well, I’m not a doctor but I’m not stupid either, and there is an awful lot of research going on that contradicts a lot that doctors thought they knew about nutrition, for instance. But no, we have to wait patiently until the next crop of doctors learns the newest facts in medical school?</p>
<p>Time and again medical science changes its thinking. We can all think of examples where doctors “used to say” the opposite of what they say now. Not to mention individual doctors who think they know everything when they just might not.</p>
<p>“I intend to be the one on the extreme right side of the curve who compensates for all those falling on the left side of the “median” on the curve.”</p>
<p>I am hoping for a multiple sigma event on the right side of the curve for you. So glad to hear the update and to learn that you are doing well. Keep on driving/advocating. I hope the news is positive tomorrow.</p>
<p>The docs I am seeing/working with are all open to whatever info I have to share (have fired those who aren’t). They recognize that they can’t possibly keep up with everything and are grateful when I have info that is relevant and helpful to their practice, which we discuss. I do not have time or patience for docs who tell me to stop reading or who pat me and say, “I am the doc–don’t worry.” If I had folowed that advice, I am convinced I would probably be dead at this point. I opted to find docs who would partner with me instead to get and stay as healthy as possible with as few meds as possible. It is my life & body and I have the best and most interest in it performing as well as possible at all times. The docs don’t have nearly enough time to keep track of each patient in depth the way we do.</p>
<p>Sunriseeast and others who are interested in medical self-advocacy: you may want to check out “e-patient Dave”, a former kidney cancer patient who was considered probably terminal, self-advocated, and is now doing extremely well–and working as a professional patient advocate. Since his website is loosely considered a blog, I don’t want to post a direct link; however, a search for “e-patient Dave” will pop up multiple references. (Dave is a friend of mine from MIT and I have followed his story from the beginning.)</p>
<p>all this discussion is excellent. This just proves the point that no matter which health problem you have, the most important organ is the brain: the attitude, the discipline, and the intellect. </p>
<p>Score one for the nerds, propeller heads, and egg heads over the beauty queens and jocks!</p>
<p>The issue of the women who miss chemo sessions despite the fact that doing so significantly lessens the efficacy of their treatment reminds me strongly of my own situation. </p>
<p>I have a chronic disease–T2 diabetes–in which the patient can have the dominant influence on whether the disease is controlled or progresses. Yet the conventional medical advice at this point is clearly based on lowered expectations of patient compliance, and virtually guarantees that the diabetes of people who follow it will progress and greatly increases the chances that they will develop serious complications such as neuropathy, blindness, amputation, kidney failure, and so forth. (T2s whose diabetes is really well-controlled without significant drug intervention–ie, HBA1C below 5.7 or so–are generally not even included in studies.)</p>
<p>When I was diagnosed, I researched and chose to hold myself to a higher standard than that suggested by the diabetes education literature. As a result, I am a star patient of the practice. Last time I was there, my doctor’s preceptor came in and congratulated me on my results, saying “No one does this.”</p>
<p>I firmly believe that more people WOULD do this if they were given the straight dope by the medical profession and encouraged to take their health into their own hands, rather than being treated like largely passive objects.</p>
<p>Consolation, could you give a few specifics? A close relative of mine was just diagnosed with Type 1 diabetes (auto-immune latent) in her mid-40’s. We are trying to quickly educate ourselves. She has never been overweight and has always been fit, and she was already following a healthy diet and exercising, so there is nothing really obvious to change.</p>
<p>Do you mean that you are tracking blood sugar closely and adjusting medication? Or are you controlling your condition without insulin? Or do you mean that you are following a very strict diet? Any resources would be greatly appreciated.</p>
<p>Sunriseeast, I couldn’t agree more that your self-advocacy is pushing you toward the favorable end of the bell curve. Your reasoning is impeccable. I have had a similar experience in the context of infertility treatment; graphing my hormone levels, reading everything in the medical literature and, when I had enough data, persuading the doctors to alter the type and dose of medication in a way that I believed would lead to a better outcome - and it did (S1). They were not used to this, but were willing to consider my suggestions.</p>
<p>And I share your outrage at being refused the images of YOUR body, paid for by you and your insurance company! This is standard practice, because the belief is that the information must be interpreted by the doctor who ordered the test, but I agree that the images or test results should be furnished to the owner on demand.</p>
<p>NYMomof2–not to jump in and answer for Consolation, but from what I know, Type 1 is not caused by anything the patient did or didn’t do…it’s just a defect in the pancreas. Type 2 seems to be caused by overweight & poor eating habits. Destroying your metabolism, basically.</p>
<p>Good for you, Consolation. My H has Type 2, and his doc is content to give him meds, including one (Actos) that actually makes it more DIFFICULT to lose weight. And my H just goes along with it, partly because the nutritionist he saw is old school. I feel so helpless but it’s not my body.</p>
<p>NYMomof2, I will PM you so as not to hijack this thread. :)</p>
<p>T1 is an auto-immune disorder.</p>
<p>mommusic, to say that T2s cause their own disease through poor eating habits is a gross over-simplification and a case of blaming the victim. There is a genetic component that is only partially understood, for one thing. There is also the fact that a “broken” BG mechanism CAUSES overweight. I know any number of people who are more overweight than I ever was, and for more years, who don’t eat anywhere near as healthily as I always did, who get far less exercise, and THEY are not T2.</p>
<p>One a T2 is diagnosed, however, or is told that they are pre-diabetic–something that happens all too rarely–THEN they can take matters into their own hands. </p>
<p>Your husband is receiving very bad medical advice, IMNSHO. Actos is implicated in congestive heart failure. The nutritionist probably gave him the usual line of BS about how he should eat 45 mgs of “healthy” carbs per meal, then the doctor “covers” his excess consumption with a dangerous drug. Advice and “care” like that is literally killing diabetics. Of course he is going to listen to them because it is easier to swallow a pill than to test regularly POST-PRANDIALLY to determine what his body can REALLY tolerate and modifying his diet to suit. Not to mention getting regular exercise.</p>
<p>I could rant about this endlessly. My suggestion is that you get Gretchen Becker’s book on T2 for him and hope he reads it.</p>
<p>Even Weightwatchers has come around to the idea that all calories are not equal. They changed their point system so people can eat more fruits/veggies for free, and think twice about eating easily digested carbs. </p>
<p>I never believed them when they said a candy bar of 100 calories was equal to a piece of fruit of 100 calories. My mother taught me better than that! ;)</p>
<p>“I never believed them when they said a candy bar of 100 calories was equal to a piece of fruit of 100 calories.”</p>
<p>Well…100 calories is 100 calories. However…there was a time in the past when WW allowed unlimited fruit. I remember when I went to a meeting and the leader said “None of you are here because you ate too much fruit.” She was right. I can eat a box of cookies on one sitting…but cannot, in one sitting, eat the same caloric content in fruit.</p>
<p>Sorry to continue the “hi jack” (Maybe OP will enjoy the slight diversion…although…she had stated that, if anything , she is underweight!)</p>
<p>Well, one difference between candy and fruit is high fructose corn syrup, which they now know has a deleterious effect on the metabolism. They used to think all sugars were the same.</p>
<p>Today was my 11th chemo week out of total 18 weeks - hopefully that’s all I need, but there is always a possibility that they may want to extend another two rounds - 6 weeks. So far, still no side effects other than hair (an old story) and blood count tanking (getting shots for this).</p>
<p>Today was a day of high drama, but on my account. I am recruiting you to send good thoughts to a women I love dearly - the older sister of my husband. </p>
<p>She is going through a lung transplant surgery in Vienna, Austria as I type this post. This is what she has been waiting for a year, and finally her turn came. I was very ecstatic when I got the news: after all, I was already worried that her time may run out before they find a donor for her: she is so petite she needs a pre-teen age group donor. However, there is about 10% mortality rate for the surgery itself. Though I have every reason to believe that her otherwise problem free health status is an excellent starting point, we are all pins and needles.</p>
<p>I wish I were there and stay for a few days to see her get better, but as you can imagine, I am in no position to do that with weekly chemos and blood count boosting shots I need three days a week, though physically (stamina wise), I should have no problem.</p>
<p>My husband is on an international business trip, and he is losing his mind with worry. I feel so sorry for him. There are three significant women in his life. One is an unending source of aggravation (his mother) with nothing good ever coming out of his interactions with her. Another one he loves dearly (his sister) is going through a serious transplant surgery and the last one (me) is dealing with a pretty scary medical condition too. So, two women he loves most in the world are both having life threatening issues. </p>
<p>Its gotta be hard on him. I always believed that its better to go through all this yourself than watch your loved ones go through this. I vividly remember the first thing that occurred to me when I heard a doctor saying cancer at an advanced stage officially for the first time. It was the sentiment of profound gratitude that its me in this family, not my husband or the kids, who will have to go through this. I was not feeling like that because I was a saint. I felt that way because I know it would be so much more difficult to be a watcher. </p>
<p>So we are keeping vigil from several continents tonight.</p>
It’s great to realize you’re halfway done. </p>