Support for LateToSchool

Parent Cafe
2321

<p>Kudos to you LTS, you are an outstanding role model for those who need to understand how to fight when sh** happens! I look forward to reading your book in a few years time. I can see you on Oprah signing copies for your fellow posters on CC!</p>

2322

<p>LTS,
Are you and your local “posse” still viewing cherry blossoms this weekend? If so, make sure you delegate and assign someone to report to those of us far away. Enjoy!</p>

2323

<p>

</p>

<p>LTS:</p>

<p>I’ve now read what I’m pretty darn sure you were referring to here, and while I don’t have anything to “void” your reading of it, I do have very different interpretations of what you read.</p>

<p>What I’m assuming you were referring to here is actually a couple of different responses by this oncologist to queries from family members of patients who, unlike you, clearly seemed to be losing the battle with their disease and to be near the end of their lives.</p>

<p>In one of the queries, the patient’s husband asks about whether it makes sense to try a fifth round of chemotherapy, saying that she hates to see her husband “suffer from the side effects of another chemo, if there’s not much hope that it will help.” And to this, the doctor responds as follows:</p>

<p>

</p>

<p>[Topotecan</a> as a (5th line) treatment for SCLC? « OncTalk Forums](<a href=“http://onctalk.com/bbPress/topic.php?id=1162#post-6181]Topotecan”>http://onctalk.com/bbPress/topic.php?id=1162#post-6181)</p>

<p>A couple of things are, I think, striking about this response. The first is that the “sun not going down at night” language has nothing whatsoever to do with someone who is in the situation you are now in - generally feeling good, having every reason to be hopeful, etc. Rather, he’s talking about a patient who truly seems to be near the end of his life, and telling the patient’s wife that, under these circumstances, he does not see any realistic hope of benefit - and does see harm - in trying yet another round of chemotherapy. In context, I think the doctor’s comments are anything but callous; rather, he strikes me as sensitive and compassionate.</p>

<p>In the second thing that you (I’m pretty sure) were referring to, the doctor is again responding to a query from a family member (this time the daughter) of a patient who seems clearly to be at the end of his life. She’s asking him what they can expect at this point. And here is how he responds:</p>

<p>

</p>

<p>[SCLC-ED</a> Coming close to the end - question « OncTalk Forums](<a href=“http://onctalk.com/bbPress/topic.php?id=1164]SCLC-ED”>http://onctalk.com/bbPress/topic.php?id=1164)</p>

<p>As for this response, what I find most striking are the following: (1) again, this has nothing whatsoever to do with someone whose circumstances are what yours are now, (2) he’s not saying that all people who were extremely vital before the illness will, if they die from the illness, have an “agonizingly” slow decline (he uses the word “can”), and (3) he addresses various ways in which the patient’s suffering can be mitigated. And he certainly is not saying, as you suggested, that “feeling terrific (considering all of the treatment), continuing to fully function, having terrific reasons to continue living, etc.” doesn’t mean anything.</p>

<p>In both of these instances, I think that this doctor comes off as sensible, decent, and caring. All of which leads me - in the department of unsolicited advice - to suggest that the next time you read something that throws you for a loop like this, you have someone whose judgment you respect read it and offer you their interpretation. You just might find that what you found so upsetting wasn’t really in what you read after all.</p>

2324

<p>

</a></p>

<p>[Gretna</a> Cancer Patient Vies For Entry In Pro Golf Contest - Omaha News Story - KETV Omaha](<a href=“http://www.ketv.com/news/15778488/detail.html]Gretna”>Omaha News, Weather and Sports - Nebraska News - KETV NewsWatch 7)</p>

2325

<p>and another</p>

<p>

</p>

<p>[Waging</a> War on Lung Cancer](<a href=“http://www.fda.gov/FDAC/features/1999/399_lung.html]Waging”>http://www.fda.gov/FDAC/features/1999/399_lung.html)</p>

2326

<p>epistrophy, you are my hero. And, I am pretty sure, a lot of other peoples’ as well. Simply fantastic!</p>

2327

<p>^^^ epistrophy you are stunning.
CC community don’t miss Post 2326 we can vote (daily) for John Atkinson to play at Torrey Pines, and collectively perhaps impact this decision.
We would accomplish two things by a click of a mouse.
Help a man facing this terrible disease, play the most memorable golf game of his life.
And, we will help LTS realize one of her goals which is to make this cancer more visible.</p>

<p>FYI-my father died of pancreatic cancer in '85 at 58 years old.
My mother, 79 yr old) is a two pack a day cigarette smoker, and we await the day when she faces this disease.
I am thankful to LTS, whose SPUNK I so admire for bringing me to onctalk, and Dr West who is extremely caring.</p>

2328

<p>Epistrophy, I am very familiar with that site - I have read every document, post, thread, study, and report it contains, some several times, over the past six months, and, I simply do not agree with the oncologist’s response at all. In general, I find his responses to sclc issues horrifiying, overly negative, and in many cases, dead wrong when compared to research. His attitude specific to cutting edge treatments and some of the alternative, natural therapies is nothing short of ignorant. I don’t post on that site and am not a member of it, however, the five year survivor and I, as well as a couple of other survivors visit that site just in case there is something we miss, or need to know, or we lurk to see if there is someone we might be able to actually help (this last hasn’t happened yet).</p>

<p>The gentleman he refers to is one year out from diagnosis. The writer is the man’s totally exhausted wife and primary caregiver. They live near Moffitt Cancer Center, and that is where his oncologist practices. I am sure the oncologist is somewhat correct - the likeliness of a 5th line of treatment working is very, very small - BUT - the number isn’t zero, even now. This gentleman isn’t too much different from me at all - six, seven months from his diagnosis, he is about where I am now, from what I can tell. He was still working, and still somewhat active. Granted, he is older, and he is male (for some reason females seem to do better here). Oh and he smokes. But in terms of disease course, we’re not all that different. The oncologist COULD have posted back with information or ways to research clinical trials, etc. - heavens, even Randy Pausch - having exhausted all traditional treatments - is still exploring “about 20 other things”, and rightly so. Instead, this oncologist rushes sclc patients to the cemetary - at the exhausted caregiver’s urging or at minimum benign support. This is a pattern the survivors and I have seen displayed on this site over and over again. I think the gentleman’s Moffitt oncologist is correct - no one can say if the 5th line of treatment will work, or not, until someone tries. </p>

<p>In addition, those of us who are fighting this disease find the obsequious, parasitic tone between some of the caregivers and this particular oncologist just absolutely sickening and appalling. </p>

<p>It does appear to be somewhat correct that the oncologist is a caring man in SOME situations, however, specific to sclc, the negativity is simply overwhelming, and not helpful. To read his comments over time, especially when they are supported by parasitic caregivers whose patients have died of this disease (but yet still hang on to the site and post and post and post, even months and months afterwards), a patient with sclc need not fight; the battle is already over, the cancer is going to do what it’s going to do no matter how hard one fights back, no matter how great the attitude, no matter how diligent and excellent the medical care, no matter how excellent the baseline health otherwise, no matter how young, etc. just hurry up and get on the bus to the cemetary because it’s all completely hopeless. </p>

<p>Sorry to be so overly negative, but this is how those of us - including the five year survivor - view the body of work of comments of this oncologist specific to sclc. </p>

<p>Having said all of that, the opposite issue is that there are many, many people who have zero resources, information, help, or assistance, and, unlike my doctors, who give me their home telephone numbers and who are very responsive to me, these people have very, very little support. In all fairness I do see where the man offers support and help to those who otherwise are lost and in need of some basic direction. I do think it’s a good idea to financially support his work, because, just because he is very far from perfect for sclc situations (in our opinions), this does appear to be a necessary resource for a significant percentage of the lung cancer population, and, there are far too few resources - and certainly no others we know of that are so comprehensive - for this population of cancer patients.</p>

<p>Edited to add: I think one of the issues that troubles some of us the most about this site and the sclc negativity is that the lung cancer population in general appears to be in a somewhat lessor socioeconomic group. As a whole, inquirers and writers to that site are absolutely no intellectual match for the Ivy educated oncologist. So when he tells people (primarily caregivers who are rushing ahead to the cemetary - oddly, it never seems to be the cancer patients themselves writing the post) it’s game over, the site participants appear to swallow his comments wholesale. It’s no wonder the death rates for lung cancer are so high, with attitudes like this
</p>

2329

<p>LTS:</p>

<p>A couple things:</p>

<p>–Obviously, I haven’t reviewed this particular site anywhere near as thoroughly as you have. I was simply reviewing the particular comments that you seemed to be referring to (and, from your response, I gather that I had the right ones). And in my view, you were misreading them. But if you don’t agree with my interpretation, well, of course you’re more than entitled to your interpretation - as would anyone be. And I would never try to suggest otherwise.</p>

<p>–Part of the difficulty, and challenge, of being a doctor, I would think, is that no matter how much the lay public (and I’m including myself here) might want to believe otherwise, there very often is not simply one “right” answer or approach. Sometimes, I assume, none of the available options seems “right.” And in the area of oncology, I’m sure, there are often very difficult questions that require weighing of many different potential upsides and downsides. This weighing process necessarily involves a lot of subjectivity. If a doctor were to misrepresent the issues involved, then he could, in my view, reasonably be faulted. But if the doctor represented the issues accurately, I don’t think that he could reasonably be faulted for taking a particular position on the weighing issues, so long as it was reasoned and defensible (and so long as the ultimate decisions on these issues were, as appropriate, left for the patient to make). And the fact that someone else - another doctor, or patient, or whomever - might reasonably reach a different conclusion would not mean, in my view, that the first doctor was “wrong” in his approach. What it would mean, rather, is that the questions involved were exceedingly difficult - and could reasonably be resolved in different ways.</p>

2330

<p>Medicine is about an exact a science as weather forecasting. </p>

<p>“Odds” and “statistics” are just numbers on a page based on supposedly perfect data.</p>

<p>They call it “practicing medicine” for a reason. </p>

<p>There is no guarantee outcome, either positive or negative, whether it be fertility treatment or cancer treatment.</p>

<p>There is always going to be someone who dies or lives ‘unexpectedly’, against the ‘odds’.</p>

<p>LTS, the only thing you have control over is your own brain (and thus your body).</p>

<p>I don’t think I’ve ever ‘met’ anyone more equipped to sort thru all that you are dealing with.</p>

2331

<p>Epistrophy you are quite correct - hence my problem with the man’s response. He wasn’t wrong - by the numbers, the statistics, it’s incontrovertible that there is almost no chance at all that this fifth line of treatment is going to be impactive against sclc. So he did give an accurate, if hopeless, dismal, depressing answer. I think that he could have served the caregiver better by offering alternative suggestions - but - he doesn’t do that. I am puzzled because the chemotherapy in question - Topotecan - is in several current clinical trials where they are mixing it with other drugs - and I am amazed that neither this onocologist nor the Moffitt oncologists are suggesting this. Could it be that they are that clueless? Or do they not care? Or are they too busy? Or is perhaps the primary oncologist just wanting to earn his infusion fee, and not lose revenue to a trial program? It’s impossible for us to know. I’d register on the site and ask, but, I don’t want to argue with the man on his own website. </p>

<p>Sadly, with less that 5% of lung cancer patients participating in clinical trials, where he may have some opportunity to be impactive and potentially even save or prolong lives. he doesn’t even bother to show up for work. </p>

<p>Still, I suppose that for this patient population, the service he does provide is better than nothing at all. And perhaps, giving the shear numbers of people who have cancer and no help, perhaps he is too busy swimming to build a boat. </p>

<p>Having said all of that, Epistrophy, I do hope you will continue to point these things out when you have a different interpretation. This works best when alternative viewpoints are voiced. I sincerely appreciate your contributions here more than you can possibly imagine. Thank you for making this such an enlightening experience for me.</p>

2332

<p>Sueinphilly, thanks for that, I think so too
it’s just very difficult to be the person in this position. There is such a shortage of real information, and there are so many things that need to be fixed in the current health care system. For example, I have a list of trials for sclc that you cannot even find on the internet - we got them by calling around, asking questions, emailing with oncologists, etc. Sadly, the average lung cancer patient has no hope at all of getting to this stuff; and when they or more likely their caregivers reach out for help, they run into the inevitable response, give up and die, it’s hopeless. </p>

<p>Frustrating
</p>

2333

<p>and another</p>

<p>

</p>

<p>[ABOUT</a> DATA VISUALS](<a href=“http://www.datavisuals.net/about/about.html]ABOUT”>http://www.datavisuals.net/about/about.html)</p>

2334

<p>LTS, I though I’d share a story from our local paper about a medical student who continued his dream of pursuing a medical degree while battling an aggressive type of blood cancer. I though of you and your courageous fight with the ugly beast while reading the article this morning. </p>

<p>Keeping you in my prayers and wishing you the best.</p>

<p>[Cancer</a> didn’t stop this doc](<a href=“http://seattlepi.nwsource.com/local/357831_doc05.html]Cancer”>http://seattlepi.nwsource.com/local/357831_doc05.html)</p>

<p>

</p>

2335

<p>LTS, was today cherry blossom day??</p>

<p>Thinking of you!</p>

2336

<p>No, not all at once.</p>

<p>oncology</p>

<p>LTS:</p>

<p>As a quick p.s. to my post 2331, I hadn’t read this before writing that post, but I’ve since seen that this particular oncologist - and you may have already read this - discusses on his website the fact that many of the important issues in oncology are ones on which “experts” often disagree:</p>

<p>

</p>

<p>[Onctalk</a> » Main Page](<a href=“http://onctalk.com/]Onctalk”>http://onctalk.com/)</p>

<hr>

<p>cherry blossoms and haiku</p>

<p>The third in the triumverate of great Japanese haiku poets, along with Basho and Issa (both of whom have been featured above), is Buson (1716-1783). Here’s one of his haiku:</p>

<p>Departing spring
hesitates
in the late cherry blossoms</p>

<p>[[minstrels</a>] Haiku – Yosa Buson](<a href=“http://www.cs.rice.edu/~ssiyer/minstrels/poems/908.html][minstrels”>http://www.cs.rice.edu/~ssiyer/minstrels/poems/908.html)</p>

<p>P.S. If anyone’s interested, here are a couple of wonderful collections of Japanese haiku in English translation:</p>

<p>[Amazon.com:</a> Essential Haiku (Essential Poets): Hass: Books](<a href=“http://www.amazon.com/Essential-Haiku-Poets-Hass/dp/0880013516/ref=sr_1_1?ie=UTF8&s=books&qid=1207447853&sr=1-1]Amazon.com:”>http://www.amazon.com/Essential-Haiku-Poets-Hass/dp/0880013516/ref=sr_1_1?ie=UTF8&s=books&qid=1207447853&sr=1-1)</p>

<p>[Amazon.com:</a> The Sound of Water: Haiku by Basho, Buson, Issa, and Other Poets (Shambhala Centaur Editions): Sam Hamill: Books](<a href=“http://www.amazon.com/Sound-Water-Shambhala-Centaur-Editions/dp/1570620199/ref=sr_1_1?ie=UTF8&s=books&qid=1207447921&sr=1-1]Amazon.com:”>http://www.amazon.com/Sound-Water-Shambhala-Centaur-Editions/dp/1570620199/ref=sr_1_1?ie=UTF8&s=books&qid=1207447921&sr=1-1)</p>

2337

<p>and another</p>

<p>

</p>

<p>[Survivors</a> get ready for Relay - 04/06/2008 - MiamiHerald.com](<a href=“http://www.miamiherald.com/484/story/482462.html]Survivors”>http://www.miamiherald.com/484/story/482462.html)</p>

2338

<p>Epistrophy, thank you, we do note that he invited comment on his site. Haven’t done so and the survivors and I probably never will - for one thing, we’ve learned too well that “life is short”, so, the prospect of arguing with someone on their own website doesn’t really sound like a profitable thing to do. I do note though that other people have from time to time jumped in and posted, especially when he has been dead wrong about an item of research
</p>

<p>In addition, we have spoken to other physicians on the west coast on other matters, and this oncologist does have an excellent reputation, and he is universally thought of as being a very kind, caring, compassionate man, and very dedicated to his patients. It’s just simply very unfortunate that his opinions specific to sclc are so negative, but, considering that he is certainly viewing the world through the lens of his experience, and that experience is that everyone dies of small cell, one can at least understand from an academic perspective why he thinks and posts the way he does.</p>

<p>We (meaning survivors - I am starting to think of myself this way now, oddly) are more concerned with the puzzlement of how in the world to get these types of patients to clinical trials, and how in the world to help other people, so that we can at least be impactive to quality of life, and, just maybe, perhaps even get just one person on the road to survivorship.</p>

<p>In the case of the gentleman - the cancer patient described in the post, we note from another site that we also monitor that his decline began rapidly when his employer unexpectedly fired him. The sad fact is that lung cancer patients are often dismissed from their jobs - I cannot tell if this happens with greater incidents than with other health issues - or if the issue is that the treatment consumes so much time that it’s simply untenable and unreasonable for employers to keep such people on the payroll or hold jobs open - but - to us, the entire spectrum of what a lung cancer patient goes through in terms of time commitment to treatment, the emotional impact, the financial impact, even the societal and family impact - we’re trying very hard to reach out for the larger picture. </p>

<p>Would this man have had a better outcome - or some small hope of remission - if he had continued to have potentially returning to his job to look forward to? In this oncologist’s opinion, absolutely not: cancer is going to do what it’s going to do. In my totally uneducated opinion, I think he would do far better. I believe very strongly in the mind-body connection, but, have no idea how to package and sell it. But I can attest very strongly to what it means to me to have clients, business commitments, staff, a daughter who still asks me for guidance on matters, long range planning for her goals, and so on
I cannot imagine fighting this battle if my daily agenda consisted of television and couch time. I think if that were the case, the battle would be already lost. </p>

<p>Bottom line, when I read such negative comments, especially by highly credentialed doctors, I get very upset. The longer term survivors don’t get upset, they sort of laugh it off, but, it bothers me tremendously. </p>

<p>Thanks for letting me rant
</p>

2339

<p>LTS:</p>

<p>In the department of unsolicited advice: </p>

<p>Why not go out, today (the only day that any of us has, whether “ill” or not), and take in some cherry blossoms?</p>

2340

<p>I just watched the 10K run and came back home; yesterday, we did three museums, shopped in Georgetown, took in lunch, dinner and a movie; home by 2:00 a.m. We estimate we walked over twenty miles yesterday (we did all this on foot because we reasoned the exercise would be fun), and climbed I don’t even know how many stairs to all the cool shops in Georgetown.</p>

<p>Today, more museums, but it’s supposed to rain all day so I am not sure cherry blossoms will work
even so, this morning, I have already addressed three client letters, made my travel arrangements for next week, and cooked breakfast
</p>

<p>BTW “The Other Boleyn Girl” - interesting movie.</p>