Support for LateToSchool

Parent Cafe
481

<p>If you’re interested in reading more about these issues, Susan Sontag’s extended essay *Illness as Metaphor<a href=“originally%20published%20by%20itself,%20later%20coupled%20with%20a%20related%20essay%20on%20AIDs”>/i</a> explores them in what I recall as (it’s been a while since I read it) very interesting and thought-provoking ways. </p>

<p>

</p>

<p><a href=“http://findarticles.com/p/articles/mi_m0GER/is_1999_Fall/ai_56457595[/url]”>http://findarticles.com/p/articles/mi_m0GER/is_1999_Fall/ai_56457595&lt;/a&gt;&lt;/p&gt;

482

<p>LTS: very interesting list of survivor commonalities. Sounds like a room full of them would make quite a fun party!</p>

<p>“Highly adaptable” makes so much sense-- because they are less likely to waste their energy bemoaning diagnosis/problems/changes, instead focusing all their energy on dealing with reality head on.</p>

<p>I read a very good book last week. The author is a friend of a friend and I was actually doing a politeness read-- but it completely captured me and moved me.</p>

<p>It is called “Its Not About The Hair”-- the true story of a cancer center chaplain who is disgnosed with breast cancer and receives treatment at the same center where she works. It is funny, wise, insightful, and moving. A really wonderful book. She embodies the traits you list, particularly zest for life, wanting to live–but not fearing death per se. Also the weirdness: she’s a most unusual and irreverent chaplain. (At one point she talks about praying, asking why me, why she got cancer-- and reveals that God’s message back to her is: “S___ Happens.”) </p>

<p>LTS I send you thoughts of healing and light. Hoping today is a good day.</p>

483

<p>LTS, thought you might appreciate the story “Big, Bad, Ugly Cancer” at <a href=“http://www.theintelligencer.net/page/content.detail/id/501374.html?nav=510[/url]”>http://www.theintelligencer.net/page/content.detail/id/501374.html?nav=510&lt;/a&gt;&lt;/p&gt;

<p>While this story is not about lung cancer patients, it does have some material I thought might resonate with you. Specifically,

</p>

484

<p>JEM. thank you for posting that; it helps me a great deal to be able to see positive news, even if it isn’t my particular cancer. </p>

<p>I went to see my Miami oncologist this morning; I took to him the CDs of the PET/CT scans I had done in Washington two days ago, and then they also faxed him the report. I could not really understand the report by myself as it contains entirely too many medical terms, but, he said it was good news; after just two chemo cycles, the primary site is in agony and dying (his words - it’s dying from the inside and collapsing), and the metastasis site (liver) is either (1) gone, or (2) it was never cancer in the first place. I would have loved to have bought option (2), but, I reminded him the biopsy was done from the liver, so, it doesn’t really work to try to hope it was never really cancer in the first place. He then remembered, and agreed. </p>

<p>So I will have chemo next week, and, over Thanksgiving, and then, another scan, and then, chemo and radiation combined. </p>

<p>But back to the point of your post, JEM, I expressed to him that I knew the reality of this - that small cell lung cancer is highly sensitive to chemos and easy to kill and therefore this morning’s news - while very good and I am appreciative of even the smallest bit of good news - is not surprising; furthermore, that even if he manages to disappear all of it, 95% of all patients have a recurrance; that the second line of chemo is effective in only 20% of patients, and that there is no third line - then it’s scrambling for trials, etc.; I told him, basically, reading information online, studying carefully what medical professionals have written about this, the prognosis is either (1) die miserably and expensively {there is even an article online that I was NOT looking for but bumped into this morning that says that the cost to keep me alive for just one year is $2 million dollars} or (2) die faster. Then I asked him, did he know of anyone who did not have a recurrance? or who won this? Or who was able to reclaim their life? He said that he did. I asked, why, then, did I never read anything about long term survivors online or even just success stories, no matter how much research I do? </p>

<p>He said that it’s because the details and the facts are all in patient case files, and, doctors don’t publish case files - they’re big bulky things that doctors don’t dump out onto the internet. He said it becomes known that this is winnable because news travels as oncologists talk to each other. </p>

<p>I welcome and appreciate positive news; thank you again for posting that.</p>

485

<p>SBmom there is something to being weird, I’ll admit. No offense intended to any other survivor present or lurking, but, the survivors of THIS particular cancer strike me as being very, very quirky, weird, iconoclastic, etc. They seem to be a lot like me…</p>

486

<p>LTS, I’m just happy to see you post – when we don’t hear from you for a few days, I worry about you! Take care and have a great weekend!!!</p>

487

<p>Congratulations on your “smallest bit of good news”…You’ll beat this, one baby step at a time.</p>

<p>Peace.</p>

488

<p>SJmom I just got very busy - I had a huge conference, back to back meetings, then the scans, then more meetings with doctors (it was important to me that the D.C. doctors and my Miami doctor interpreted the scans the same way and said the same things), then flew back to Miami (sat on the runway for an hour), then more meetings and work, etc., then, on another flight Sunday for a day long meeting Monday. I fly back again Tuesday and will literally have to race from the airport straight to my chemo appointment. Fortunately the first flight of the morning always goes so no worries there. </p>

<p>Since (apparently) the cost for me to live for one year is $2 million, I don’t see how I can afford to even sleep anymore, let alone post on CC. LOL.</p>

489

<p>I am absolutely thrilled to hear this good news, and love the imagery of this nasty little devil collapsing from the inside.</p>

<p>I wonder if survival stories are less accessible because of confidentiality issues. Can’t post too many specifics of a living person without their permission. And also, new treatments can’t post 5-year survival rates for, well, five years.</p>

490

<p>meh, the oncologists are speaking with each other via conference, email and phone to help specific patients in front of them. They are working practitioners and maybe don’t have any time to publish. Like LTS, they are chasing from one situation to the next. How many times did you discover something useful in your field and someone said, “You should publish that!” but your answer was you were too busy working on the very next issue right in front of you. I’m thinking the oncologists put their knowledge to where it can do the most and fastest good with those right in front of them, like LTS.</p>

<p>I was very impressed with a 20% figure in the second round of treatment. One in Five…that’s more kids than get into a lot of the selective colleges and universities highlighted on these sites. And those campuses have lots of kids jumping all over them. 20% isn’t 3%. </p>

<p>Above and beyond the statistics is the joy of hearing LTS living every day of her multi-layered life, from airplane to conference, friend to friend, book to pillow. Sabbath Peace tonight – “Leyda Schul” will be in our healing prayer. </p>

<p>Wish I could actually sing it to you, but will put forward these lyrics to a M’shebeirach (blessing) prayer we sing each Friday. Music is by Debbie Friedman, and lyrics by Rabbi Drorah Setel: </p>

<p>(bunches of Hebrew, then):
Bless our fathers, bless our mothers
Bless those in need of healing with complete recovery
The renewal of body, the renewal of spirit,
And let us say Amen.</p>

<p>Bless our mothers, bless our fathers,
May the source of strength who blessed the ones before us
Help us find the courage to make our lives a blessing
And let us say Amen.</p>

491

<p>I am :slight_smile: ear to ear about your good news today.</p>

492

<p>Binx, LOL @ imagery, you should have heard my Miami doctor’s verbal expression of it. I don’t know what nationality he is - Latin American or something, I cannot remember, he didn’t go to med school here, anyway, he speaks very clear but heavily accented english, and, he said “it is AGONIZING on itself” or something like that and then he corrected and said “it’s agonized, it’s agonized” and the whole time he’s making these incredibly overly demonstrative gestures with the entirity of his upper extremities to demonstrate something evil that is truly being twisted, strangled, choked and tortured to death, it was as if he wanted to kill the evil thing wth his bare hands right there in his office, and, anyway it was really, really funny the way he expressed it all and he made me just laugh out loud. </p>

<p>Re the survival stories, you may be right, also, I speculate it’s that perhaps they do not want to jinx a good result by “advertising” it, or, perhaps it would be rather tacky? And/or perhaps the survivors just want to make the entire experience diminish in the rear view mirror, which makes perfect sense.</p>

<p>Thank you for the prayer payingfor3tuitions; I appreciate it. And for the good wishes…</p>

493

<p>I am also smilng! It’s so wonderful to think of that little bugger collapsing…</p>

<p>And, P3T, thankyou so much for printing the words to the prayer that you sing. It brought tears to my eyes…I was imagining the beautiful music. I am going to try to find it so I can hear it somewhere.</p>

494

<p>I found it and it is so beautiful.</p>

<p>I hope this link works. If your computer has an mp3 player, it should come up and you can hear this beautiful prayer…</p>

<p><a href=“http://www.ritualwell.org/lifecycles/healinghardtimes/healingfromillness/image.2005-07-25.6708517725[/url]”>http://www.ritualwell.org/lifecycles/healinghardtimes/healingfromillness/image.2005-07-25.6708517725&lt;/a&gt;&lt;/p&gt;

495

<p>it might work to look up the debbie friedman website and scroll to “M’shebeirach”
(crossposted)</p>

496

<p>Oh, that is just simply so very beautiful. Thank you…</p>

497

<p>I am so glad to hear this good news. </p>

<p>Keep up the good work! :)</p>

498

<p>LTS, I certainly don’t want to add to your to-do list! It’s just nice to hear that you are doing so well. I hope you plan to do something fun this weekend!</p>

499

<p>LTS, I am delighted that you liked the article suggestion I made earlier today. </p>

<p>I am even more delighted at the report of the effectiveness of your chemo treatments on your cancer. I love the image of the cancer dying from the inside and collaspsing. This should give you confidence that your treatment plan is well targeted to your situation. </p>

<p>It is so true that data on many survival stories has not made it into available literature. There is also a very significant lag between advances in treatment and documentation of the results. Only five+ years from now will we know how effective today’s treatments are.</p>

<p>Meanhile, here’s another reading suggestion. At <a href=“http://www.cancerguide.org/median_not_msg.html[/url]”>http://www.cancerguide.org/median_not_msg.html&lt;/a&gt;
you can read an article, “The Median Isn’t the Message,” by Stephen Jay Gould, who was told the median survival time for his type of cancer was eight months. He ended up living 20 years post diagnosis. </p>

<p>Here is the intro to his article

</p>

500

<p>latetoschool: Heard S sing Bach’s Bminor Mass tonight. Dedicated the soaring melodies to you.</p>

<p>You have so much energy. On my bed day I don’t think I could sit through a day long meeting.</p>

<p>I usually ache for someone/something dying in agony. This is one time we can rejoice.</p>

<p>Have a good weekend.</p>