Support for LateToSchool

<p>Aibarr, thank you for your post and for letting me know about the donation - congratulations and many thanks to that graduating class. I am thankful - and impressed - that they are aware of such a serious problem, and that they chose this as their priority, vs. other competing priorities. On Monday I will be reaching out to Patient Advocate Foundation to see what we might be able to do together. I am going to see if the five year survivor in Texas will join me on the call. </p>

<p>I have read so many times that most cancer patients who lose the battle don’t die of their disease, but rather they die of things like malnutrition, opportuntistic infections, toxicity issues from chemotherapy drugs, etc. And in many cases, in my opinion, they simply give up. I am convinced that a lot of these issues might be mitigated if some of these people just have some help - quantity and quality of food to eat, for example. Or help keeping their home environments clean. Or even just providing some stress relief by helping offset some of the bills, the co-pays. </p>

<p>I am so shocked and saddened when I hear of matters like a man being fired from his job and losing his insurance while laying in the hospital, or, a widow having to fight with insurance companies while grieving and raising children, or, heavens, I cannot even imagine the loss of a three month old and then having to argue with an insurance company about a muscle biopsy - yikes, can this possibly get any sadder? </p>

<p>To plagiarize a line from Hannibal Lector (either SOTL or the next book, I forget), within reach of my arm, the world will not continue to be this way. I will do everything I can, everything in my power to try to impact this situation.</p>

<p>Thinking about, it struck me that my oncologist and I did NOT spend an hour talking about how we’re going to beat my cancer. We spent an hour discussion politics, and his great, great frustration with the system, and the patients he is prevented from helping, because of financial, insurance, and legal issues. </p>

<p>I don’t want him focused on that; I don’t want it to even have to enter his mind space. I want 100% of his brain power focused on how to treat - and if possible - cure his patients. I am thankful that he has dedicated resources to reseach, so at least he knows how to treat me, and when to change those treatments. It’s not that he is neglecting me or anything, it’s just that I don’t think it’s right that he has to be focused on these things. </p>

<p>Thank you again Epistrophy for the information, it appears that this may give us the avenue to help people that we have been looking for. </p>

<p>CountingDown, I have a weird situation in play too - lab work double pay/over pay and now they’re sending me bills. It’s not worth my time to call them, so, I will wait until they call me…but if they don’t call me it will sit unresolved, and, if they even think of putting any entry on my credit report, it’ll get nasty…I’m with you on another matter too - the last few days, I have learned what it feels like to feel so lousy that you cannot even summon the strength to write an email or make a phone call. Thank heavens for at least being well enough to do these things - my heart breaks for those who cannot…</p>

<p>I am feeling better, the antibiotic was the culprit - managed to actually eat solid food yesterday, for the first time all week. And it helps a great deal to have my daughter here. :)</p>

<p>I am so glad you are feeling better. Prayers here for a wonderful weekend with your daughter.</p>

<p>And I can’t wait to hear all about your conversation with the patient advocacy group. Fantastic!</p>

<p>and two more (mother and daughter)</p>

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<p>[Greeley</a> Tribune - News](<a href=“http://www.greeleytrib.com/apps/pbcs.dll/article?AID=/20080607/NEWS/153466061&template=printart]Greeley”>http://www.greeleytrib.com/apps/pbcs.dll/article?AID=/20080607/NEWS/153466061&template=printart)</p>

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<p>Actually (and unfortunately), maybe not too surprising at all - and maybe a sign of what life is like for many folks, even ones who (like you) try to find out everything they can, in the age of internet.</p>

<p>On the one hand, there’s more information more readily available to more people than ever before. But on the other hand, there also tends to be less synthesis, less coherence than ever before.</p>

<p>As a result, folks can wind up knowing all kinds of arcane details while, at the same time, being unaware of things that would seem to be much more fundamental. </p>

<p>In a world like this, where there’s both too much and too little, no wonder there’s such a need for patient advocates!</p>

<p>Thinking of you, LTS, and wishing you a wonderful weekend and a hearty appetite (and the ability to keep the food down). :)</p>

<p>“I don’t want him focused on that; I don’t want it to even have to enter his mind space.”</p>

<p>I once sat in an exam room listening to my orthopedist in the next room yelling in frustration on a phone call with an insurance company. When he came in to see me he apologized and vented for a bit about the system. I know that I have had fights with insurance companies that left me so angry and upset that I could hardly function – it’s not right that the professionals we expect to be focused on us should have to feel that way, especially during working hours.</p>

<p>Epistrophy:</p>

<p>Exactly! It’s a double edged sword, the too much and too little. Education is wonderful but at what price? </p>

<p>When I worked in a physician’s office, every time something new came out on the internet, the physicians spent countless hours having to explain to each patient why each particular medication would not be right for each patient who wanted to try it. On the other hand, there were several cases of patients bringing information to the physicians that might not have been tried. In my mother’s case, a gel for arthritis that is less likely to cause ulcers. So far so good.</p>

<p>LTS have a comfortable weekend.</p>

<p>and another</p>

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<p>[Cancer</a> survivors rejoice by ringing bell at hospital | thetowntalk.com | The Town Talk](<a href=“http://www.thetowntalk.com/apps/pbcs.dll/article?AID=/20080607/NEWS01/806070369/1002]Cancer”>http://www.thetowntalk.com/apps/pbcs.dll/article?AID=/20080607/NEWS01/806070369/1002)</p>

<p>Epistrophy, I understand, but, we have been looking for precisely something like this - we being the five year survivor, his wife, and me. We have been frustrated so far because we know we cannot do anything about health care with the current administration. </p>

<p>Then we tried to work through LAF but that was goofy. Then, we tried to give individual people money, but that has been weird, because it’s like stalking people over the internet and offering to pay for things for them. We also tried to arrange transportation for people needed to get to national cancer centers for trials, and we managed to mangle that all up, as well. We have managed to help a couple of people with small amounts of cash but that is all. </p>

<p>Of course, prior to all of this, the five year survivor has tried to start support groups, counsel people in hospice, etc., and hasn’t gotten very far. </p>

<p>So, contributing of our resources through a credible, existing patient advocate service seems like the perfect solution. We don’t have the bandwidth to start from scratch, setting up the 5013C etc.</p>

<p>Momof2inca, thank you, my daughter has been making me eat, and, everything has stayed down, with no chemical assistance, for which I am thankful. </p>

<p>I feel horrible though - we spend about eight hours today shopping, and seeing a movie (don’t anyone waste their money on Strangers, what a weird movie, we were disappointed) - we like shopping because it causes me to walk a lot. My daughter tells me I always feel worse the day immediately following chemotherapy, and then I get better as the days go on. </p>

<p>Mimk6 that is precisely why laws have to change. Never in my life have I felt so horribly sick, and I cannot imagine being this sick and trying to wrestle with insurance and financial issues. I cannot even imagine it. It’s all I can do now to do my work, and get enough nutrition and rest. It takes every last bit of strength I have, mentally and physically. Just cannot imagine having to fight an insurance company too.</p>

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<p>–Dr. Joyce Brothers</p>

<p>and another</p>

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<p>[Be</a> Well > Cancer > Lung Cancer Survivor Tells Her Story](<a href=“http://www.baldwinpublishing.com/article/siteCode/SFBeWell/catgId/3/articleId/881/]Be”>http://www.baldwinpublishing.com/article/siteCode/SFBeWell/catgId/3/articleId/881/)</p>

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<p>–Wade Boggs</p>

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<p>–Wikipedia</p>

<p>and another</p>

<p>[Stars</a> of David: Rock’n’roll’s Jewish … - Google Book Search](<a href=“Stars of David: Rock'n'roll's Jewish Stories - Scott R. Benarde - Google Books”>Stars of David: Rock'n'roll's Jewish Stories - Scott R. Benarde - Google Books)</p>

<p>and another</p>

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<p>[When</a> Words Fail … Cancer Art Competition Gives Rise to Expression and Hope](<a href=“All News Releases and Press Releases from PR Newswire”>All News Releases and Press Releases from PR Newswire)</p>

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<p>–Bill Bradley</p>

<p>more on John Atkinson</p>

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<p>[Omaha.com</a> Sports Section](<a href=“http://www.omaha.com/index.php?u_page=1200&u_sid=10352425]Omaha.com”>http://www.omaha.com/index.php?u_page=1200&u_sid=10352425)</p>

<p>After the match, when asked about his brother joining him for last hole, the Omaha golfer became emotional and stopped speaking for a moment.</p>

<p>“Kevin’s been golfing with me all my life,” he said wiping his eyes. “Having him there with me is something I’ll remember my whole life.”</p>

<p>Epistrophy- thanks for postiing- beautiful news.</p>

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<p>My husband and I have a friend who had cancer (he is well today and living a full life). He would have chemo on Thursdays and he would sleep Thursday night through Sunday, to be able to force himself up by Monday morning. He needed to sleep a lot after his chemo. It always made him extremely tired and weak. He did nothing for 3 days after his chemo therapy. He was able to handle 4 day work weeks this way. His employer was wonderful to him, and very understanding and flexible. He still works for the same company today.</p>

<p>and another</p>

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<p>[Cancer</a> survivors celebrate at Milford Regional - Milford, MA - The Milford Daily News](<a href=“http://www.milforddailynews.com/news/x858457573/Cancer-survivors-celebrate-at-Milford-Regional]Cancer”>http://www.milforddailynews.com/news/x858457573/Cancer-survivors-celebrate-at-Milford-Regional)</p>