Support for LateToSchool

<p>LTS–so sorry. Not “speaking” in person means that sometimes words only in a “one way” conversation do not express what I meant. It was more a general statement that was supposed to mean “if the time ever comes…” not when. And since I am often posting not just to you, but to others reading, it was more a general statement. Sorry. I really and truely have the same attitude towards my work as you do. And to make matters worse, I also see in my line of work MANY patients who were once considered “disabled” any maybe once were during treatment who are now not disabled. They are also working, being paid creatively, and I feel that their disability payments and Medicare payments are WRONG. </p>

<p>Poor choice of words. My bad.</p>

<p>Sunny-you need not apologize- I’m sure you meant well</p>

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<p>[CancerWise</a> - March 2005 - Cancer Patients Can Be Well Just as They Are](<a href=“Cancerwise Blog | MD Anderson Cancer Center”>Cancerwise Blog | MD Anderson Cancer Center)</p>

<p>See also: [Mindfulness</a> CDs and Tapes - Meditation CDs and Tapes - Stress Reduction CDs and Tapes By Jon Kabat-Zinn](<a href=“http://www.mindfulnesstapes.com/index.html]Mindfulness”>http://www.mindfulnesstapes.com/index.html)</p>

<p>“You can be unbelievably healthy no matter what is wrong with you."</p>

<p>I like that. We all know people who are living with serious, even terminal illnesses. But they live, and live well. Cancer, MS, Parkinson’s, AIDS, are a part of who they are, but not all that they are.</p>

<p>Cells are always dying. We are all immersed in life and death for the entire time we are here on this planet earth.</p>

<p>LTS is bravely looking at some very scary things straight on. But I think her energy, resources, commitment, guts, empathy and intelligence is what we all think of when we think about her, not her illness.</p>

<p>absolutely, Mythmom…couldn’t agree more about LTS and her vibrant approach to living before and after this news…makes me think not only "could I deal with illness with her depth of field…but more so “Am I am living my life as fully as she inhabits hers?”</p>

<p>Sunnyflorida, understood. It’s just that I am looking for weapons, not escape routes. And so anything that strikes me like an escape route, I’m not going to respond very well to it, even while intellectually I understand what you mean. I was pretty much this way before I was diagnosed with cancer and post-diagnosis I’ve become absolutely impossible on these matters. And, this is just one more stupid thing that needs to be fixed in this disaster that is our health care system. It’s just beyond stupid that the people who desperately need the help aren’t really being helped and yet the fraudsters can scam the system at will. </p>

<p>Epistrophy thank you very much for that, I appreciate it. Yet another weapon, and I cannot have too many right now. </p>

<p>Everyone else would almost certainly deal with this just as bravely, and with an equally strong sense of purpose. I don’t think there’s much of a choice, actually. I think we’re biologically programmed to make every sensible, possible effort in favor of self preservation. </p>

<p>I also understand why some people can say cancer is a gift - yesterday, I ran/walked from the Pentagon to the Mt. Vernon trail, which begins in Crystal City, all the way across Key Bridge into Georgetown, and then back again. I have no idea how far that is but it took five hours - mostly because everything was so beautiful, I had to slow down to walk to look at everything. Oh and of course it’s not really possible to stay out of the shops on M Street lol. Stunningly beautiful day, and the thrill and freedom of fresh air and sunshine. I didn’t have to worry about having anything in my head except for the beauty of the experience (Ghandi-like meditation???) - something that would not have happened pre-cancer, because I would not have made the time. Then, dinner with friends, and I watched An Inconvenient Truth - very interesting and thought provoking for this conservative. </p>

<p>This morning, I took the earliest available flight back to Miami - chemotherapy again this coming week, starting Tuesday through Friday. So my daughter and I spent the day on the beach…we are hosting friends for Thanksgiving, and, I intend to enjoy every minute of it.</p>

<p>I am very fortunate, and, there are so many other people battling this and other serious health issues, and many of them have children still in school, and they don’t have anywhere near enough resources. I didn’t hear back from the LAF Friday as expected, perhaps they were just busy, perhaps staff rushing around trying to finish up work prior to holiday vacations, so, if I don’t hear from them tomorrow I will chase it. There are simply far too many people suffering and in serious trouble, and no where near enough medical and financial solutions available, and so until I can force my mind around the bigger issues specific to the health care system and figure out what in the world to do, if I can just get just one fundraiser launched, perhaps I can build on it and make multiple fundraisers happen. </p>

<p>It crossed my desk yesterday, there is yet another young father of three, also non smoker, diagnosed with this. He is not doing very well; he is in the hospital. His wife is simply shocked. They were going along with life quite happily, and then out of nowhere this comes…his doctors are a little more optimistic…I am reading that one in four women, and one in three men will have a cancer diagnosis. LAF indicates that the National Cancer Institute had its funding cut FY 2006 for the first time in 30 years, and, it may be cut again this fiscal year. To the extent practicable and if people are interested, I’d urge support for funding, for scientific research…</p>

<p>latetoschool: Hope this is not too presumptuous but I want to say, with you on your beautiful walk, with you in your personal fight, and with you in your passionate commitment to fix what is broken in our health care system.</p>

<p>Your energy, focus and sense of purpose are not ordinary, but of course they feel that way to you, since you have probably always had them.</p>

<p>I am so sorry about the young father you mention. My thoughts and prayers, especially on Thanksgiving, will now extend to include so many I don’t know or even know of, as well as those friends, family and acquaintances I was already thinking of.</p>

<p>From LTS post

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<p>LTS, One of my childhood friends became paralyzed and wheelchair bound after a car accident ~10 years ago. At that time she was a young single mother living in Eastern Europe. The two of you seem to be soulmates. I know no one else with so much determination, integrity and work ethics. This woman was offered a new job as a regional sales representative for a large company just days before the accident. She started working full time from her hospital bed immediately after her life-threatening emergency surgery and continued for several months throughout her entire hospital stay, being constantly in excruciating pain and almost unable to sleep. After moving home, she continued to work from home. For all those years she supported her daughter and herself - basic living expenses, medical expenses, rehabilitation facilities, her daughter’s education, EC and trips – entirely out of her salary, still experiencing pain most of the time and spending countless hours exercising and trying to rebuilt her ability to move. I won’t go into many details, but she was also traumatized by a constant stress due to complicated family circumstances. This woman managed to maintain and expand a very extensive network of friends on several continents, and used this network for supporting the others and finding solutions to their problems. </p>

<p>A few years ago, she got married and moved to Finland to live with her husband who is also quadriplegic. I was fortunate to spend several days in their house, and this visit was one of the most memorable, engaging, inspiring and emotional experiences in my life. I witnessed how they approach every day and every challenge with grace, courage and dignity. She spent the last year attending classes of Finnish language, after fighting bureaucracy in order to be allowed to enroll into that class, which does not accommodate any wheelchair bound people. Now she speaks fluent(!) Finnish and actively looks for a job. Her husband is a handicapped rugby player, who travels to their games and often must play right after transcontinental flights, which themselves are torturous for a wheelchair bound person. I watched several tapes of his games, and I just can’t comprehend how someone who became paralyzed in an accident can overcome self-preservation instinct and play extreme sport where wheelchairs literally fly into the air and flip over after crashing into each other at a horrific speed. He has experienced countless broken bones and other injuries, yet he continues to play.</p>

<p>She told me many stories about paraplegics and this was an eye opening experience for me. Amongst other things, we’ve discussed the source of strength and bravery of those people who have suddenly experienced excruciating life circumstances. Amazingly, her assertion was almost exactly the same as LTS; these people did not choose to be in this situation, but once the unthinkable happened, they only had two choices: to give up or to pick up a fight, there was simply no middle ground and no alternatives. Some people did give up – who can blame them for not being strong enough to face this excruciating reality – and chronic depression or alcoholism became their destiny. Others became warriors. This transformation is quite difficult to describe and impossible to comprehend unless you are one of them. Their decision to fight is not made just once, they have to wake up to this reality every single morning, they have to commit to their decision every single day, this reality is impossible to get used to, they have to face it again and again. The amazing truth is that the vast majority of these people have discovered that they are indeed fighters or they grew up to become ones. It was fascinating to discover what most “common and ordinary” fellows are made of.</p>

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<p>LTS, I will be a little presumptuous and challenge you in this statement.</p>

<p>Not the truth of it, in terms of how important your work is, but the implication that it is more important than your life.</p>

<p>LTS, nothing is more important than your life; nothing. </p>

<p>Okay obviously there are very extreme exceptions such as: integrity-- you would not kill someone else to survive yourself. Or love-- you would sacrifice your life to save your child’s. Or honor-- dying for your country. I can understand all of that. But please, you are so much bigger than your work, it pours through in all you write. Your “work” re fixing the healthcare system might someday be even more meaningful than your paid employment.</p>

<p>I am a fiercely independent person. (My husband relentlessly teases me to this day about me refusing to accept a gift from him when we were first dating because he was more successful at the time and it kinda felt like he might be trying to “buy” me. That’s how conscious I was about pulling my own weight. So I understand.)</p>

<p>Think about this; it seems to me that embracing life 100%, even if on disability, is more of a “will to live” position than if you are qualifying the kind of life you would or would not accept. </p>

<p>Do you see what I mean?</p>

<p>Again I hope I am not being too presumptuous to say this, it just hit me as I read what you wrote.</p>

<p>btm: Thank you for your very beautiful and inspiring post. Pefect for Thanksgiving.</p>

<p>Mythmom, you are very welcome. Miracles do happen in our life, it’s just difficult to recognize them, yet it’s even more difficult to become a miracle. But it is possible! :)</p>

<p>SBmom, I don’t particularly care how my comments are perceived, or even if anyone likes them, or approves. I am completely polarized in my decision and it is final. Fortunately, my profession does not require that I be able to run fast, throw footballs, swim very far, jump high, etc. For me to not be able to do my work would require that I would be unable to think, speak, type, etc. So this is not the fatalistic decision that it might appear to be if taken out of context. </p>

<p>BTM that is a stunning story. What incredible courage. And you’re so right about having to commit to this fight every single day. It’s not enough to just say “I’m going to fight this”, and then go do it. It is necessary to summon the psychological energy and make the commitment every single morning, when one’s eyes first open, and the reality hits anew. And then keep making the commitment throughout the day. </p>

<p>I was thinking of the five year survivor in Texas; he presented in the emergency room with the exact same symptoms I had, but from the sounds of it he was in far worse condition. (We have the exact same diagnosis.) His wife was told more than once that it was not expected that he would live through the night. As it was related to me, she didn’t get upset or panic or get emotional - she simply responded very calmly “you don’t know my husband very well”. Then, in the hospital, if he encountered rules he did not agree with, he simply ignored them, or broke them. When his esophogus (sp?) was burned from radiation and his doctors wanted to put in a feeding tube, he refused to permit it, and instead found a way to eat, and actually managed to gain weight in the process. He also did not permit a few other procedures, determined instead to get his own body fighting on his behalf, and, as it all turned out, he was right, and his doctors were wrong, or, maybe a better way to say that, they were less accurate than was he. He also found creative ways to avoid throwing up, which I’m not going to describe here. Last, he refused PCI, even though (supposedly) it gives one a virtual free pass from relapses in the brain, a common issue with small cell lung cancer. In spite of all the evidence, he did not wish to risk the side effects. He’s been right there so far as well. </p>

<p>He continues to fight to this day. He owns a ranch, and keeps running it. He has horses, cows, whatever other animals one keeps on a ranch; he doesn’t accept shortcomings and he refuses to stop working. He either cannot or will not weld any more because of risk to his lungs, and welding was a significant percentage of his income prior to his cancer diagnosis. But he does everything else, and he refuses to quit. He is only 55 years old. </p>

<p>His second to last check up, the only thing his oncologist could find wrong was that his colesterol was too high. He was offered a prescription, which he refused, and corrected the matter with diet instead. His last visit, his numbers were far closer to normal, if not completely normal. </p>

<p>Now he is focusing on preparing himself for the next battle - fighting off secondary primary cancers, which he believes may happen, as this is reported in all the literature. He is heavily focused on developing his physical and emotional fitness; in his mind great strength will be very necessary should he need to fight very hard again.</p>

<p>Oh - I almost forgot - LAF approved my fundraiser! Now I have to go figure out how to actually do it, lol.</p>

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WOW, LTS, way to go! :slight_smile: Congratulations! Please fill us in on the details as you can.
P.S. LAF = Lance Armstrong Foundation</p>

<p>Congratulations on the fundraiser news, LTS! I hope you bring in the big bucks! :)</p>

<p>Congratulations on your fundraiser approval! Please keep us posted on the details. I have a sister who lives in DC. I’m sure she’d love to participate (if it’s a local thing).</p>

<p>Yes, please keep us posted on the details. I too have family in the DC area, including my stepsister who is a breast cancer survivor. And if it’s not just local but there’s a way the rest of us could contribute, please let us know. Your posts, your attitude, and your life are a true inspiration!</p>

<p>LOL I have to try to figure out how to actually do this. They gave me a place on their website for my website, and I already went and customized it to the extent possible, but, it needs a bit more spice. </p>

<p>I am going to have to call them tomorrow, as I am not sure how this works. The submitted plan is that a portion of the proceeds stay with LAF (general fund or whatever it is they do with misc. funds) and a portion is specifically to go to people who have cancer and who are financially challenged, to give them a little something for the holidays. </p>

<p>The part I don’t get is that there doesn’t appear to be a place in the space provided to explain this to anyone, and, furthermore, I need to make sure that LAF will select the people and give them the money. I am sure they will, but, I’d like to know how they execute, so that I can explain it to people who want to donate. </p>

<p>The issue of cancer patients financial struggling and without adequate resources is a very serious issue. So many have had their employers terminate them or otherwise downgrade their positions. I have one story on my desk of a person who was actually fired while she was in the hospital! Then there is the added fear many patients have - in some cancers the prognosis is so poor that what surely plays on their minds is - will these holidays be my last. But getting past that, there are survivorship issues for those who manage to achieve remission and cure, and many of them are financial in nature. </p>

<p>For example, supposedly, with HIPPA, health issues are to remain confidential. But how does the cancer survivor explain the gaps in a resume? There are strategies to deal with this but they rarely work - the employer is almost certainly going to hire the person with no resume gaps, regardless of the reason. My DEA friend’s daughter is having this issue now, and she’s only 26. She reveals this on interviews because she sort of has to, and, my friend her father believes she has an ethical responsibility to offer the information up front. But it means no one will hire her. The five year survivor in Texas is having this issue too - even though he runs a ranch, there are people who won’t do business with him, either out of fear he isn’t physically as capable, or because lung cancer is icky, etc. And there are numerous stories on my desk about people who are simply struggling…</p>

<p>LTS, I see what you mean, thanks for explaining. </p>

<p>I get that “not being able to do your job” implies a severe reduction in capacties that feels inconsistent with decent quality of life.</p>

<p>From the BBC: “inspirational stories from those who’ve beaten the disease.”</p>

<p>[BBC</a> - Health - Conditions - Surviving cancer](<a href=“http://www.bbc.co.uk/health/conditions/cancer/stories_surviving.shtml]BBC”>http://www.bbc.co.uk/health/conditions/cancer/stories_surviving.shtml)</p>