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Ellen in PA

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Everything posted by Ellen in PA

  1. Hi Judy. I don't come by too often anymore so I only just saw your original post on this thread. While I realize nothing I can say will assuage your fears, two things come to mind. First, two weeks after I'd been diagnosed (and less than 4 wks after I'd been discharged from the hospital), I couldn't keep any food down and was beyond constipation -- nada from the lower end. (Please excuse the gross details.) After three days I went to the emergency room and was immediately admitted and everyone -- the oncologist, my ever-present and ever-cool-headed cardiologist, and the surgeon who'd biopsied my salivary gland -- was SURE it was a met to the intestine. Well, they finally operated and, guess what, it was an obstruction all right but it was from an adhesion from my back surgery 8 yrs earlier and NOT malignant. They cut out a foot of destroyed intestine and I was good as new. When we have/had cancer. everyone thinks (patients and doctors both, in my case) every problem is a met -- but the body can still have the full range of things f***ing up, after all! Second, the digestive tract doesn't like to be fooled around with. The constipation from Alimta isn't simply a label -- it's a result of God knows what Alimta is doing to the tract. Plus laxatives can and typically do wreak havoc on the digestive tract. So you've got plenty of reasons for your digestive tract to be disgruntled, without reference to life-threatening issues. One other gross point: if you're expelling gas, that's good. A full obstruction (malignant or not) lets NOTHING out. Sorry to be so disgusting... Hang in there and good luck. Ellen in PA
  2. Yo Bud. Thanks. Another Philadelphian! Hope your neighborhood has better phone lines than mine... A bunch of us locals have been getting together at an Irish-type pub in King of Prussia about 4 times/year. Ginny deCoursey is the masterful organizer -- you two should get in touch. Where are you being treated? I'm at HUP but I've quit the oncologist -- she seemed annoyed that I was not bringing in those big chemo bucks and kept trying to shove me into hospice, even tho there's nothing that the hospice rep could think of that they could do for me at this time. I do still see my (wonderful) cardiologist every two months or so, so I'm not a total 'orphan'. Ellen in PA
  3. Hi folks. Just checked in and noticed all these lovely replies to my post, for which I thank you! And thanks, Ginny, for managing to get thru to me re the luncheon, in spite of my #$&%(#& phone being out of order for over a week. (Our phone lines in the street were laid by Benjamin Franklin and Verizon is too cheap to replace them so we lose phone service every time there's a heavy rain.) I really enjoyed seeing you all but missed Kasey and hubby -- hope you're feeling better, Kasey! My email is ellen at babel dot ling dot upenn dot edu, if anyone wants to get in touch with me and it's raining. (Fortunately, the computer connection is via Comcast, not Verizon.) Hope all of you are doing well and enjoying the spring. Ellen in (finally dry) PA
  4. Hi Barb. I am so very sorry to learn of Bill's passing. I hope you can at least take comfort in the knowledge that you have been an absolutely model wife and that the two of you left no stone unturned. Lots of hugs. Ellen in PA
  5. Hi folks. I'm just checking in to let everyone know I'm still alive, 26.5 months from dx. I lost my voice about a year ago (something obviously pressing on some nerve that goes to the larynx) but that's harder on people who have the misfortune to hear me speak than it is on me. And I'm definitely weaker than I was and have minor aches and pains but nothing disabling or intolerable. For a couple of months I had 'orthostatic hypotension' -- my bp would plummet (like to 60/40) when I stood up or walked and it wouldn't go back up till I sat down. Had all kinds of tests and nobody could figure it out. Then I prevailed upon my cardiologist to cut my dose of Lovenox in half et voila! No more plummeting bp! Re 'the path less traveled', I am soooooooooooooooooo glad I refused chemo etc. Even my cardiologist volunteered that she thinks I'd be dead by now if I'd taken it. But the best part is that it's been a pretty pleasant 26 months, which I know it would not have been with chemo. Hope everyone out there in Lungevityland is doing ok and is as satisfied with their choices as I am -- that's all we can hope for, after all. Ellen in PA
  6. Hi folks. Just dropped by after several months of avoiding everything about lc that could be avoided. I'm sorry if I've caused any concern. Anyway, I'm still alive. My story: Dx 12/07 with Stage 4 adenocarcinoma with BAC features, mets to lymph nodes, pelvis, salivary gland. Was told to expect, on the average, 8 months WITH chemo. Refused chemo. July 2008: had 15 radiation tx to pelvis and a vertebra. July 2009: had 10 rad tx to another vertebra. Had them only to prevent paralysis/incontinence. Both series made me VERY tired for a good month after tx ended. No more radiation, for sure. Had a (malignant) salivary gland removed last year because it was annoying me; surgeon cut nerve and I now have a paralyzed vocal cord. Can't win... I definitely have less energy as time goes by but am still managing after 22 months from dx. And I'm VERY glad I refused chemo. Ellen in PA
  7. Hi Hopeful. One possibility that comes to mind that hasn't been mentioned is pulmonary embolisms (PEs), i.e. blood clots in the lungs. Something like 15% of lc patients develop them. That was my first symptom (sob) and I thought it was my heart (since I'd had a massive heart attack in 2001). Long story short, it was PEs and that's how I came to be dx. Definitely talk to your onc -- these things are serious. Good luck. Ellen
  8. Hi Ginny. Good luck to your friend. BAC can be pretty indolent -- hope that's the situation in your friend's case. Ellen
  9. Ginny's quote reminded me of another favorite of mine: Judge Judy (Scheindlin): Beauty fades but dumb is forever. Ellen
  10. I'm terrible with both names and faces -- and I've never found any trick that helps. Ellen
  11. Bravo Kasey! But I knew you (and GinnyDe) would understand it -- I just added the English for those poor souls who didn't go to a fine Catholic school or marry a French speaker. Ellen
  12. Yuck! (But I wouldn't call it 'cheese'...) Calves' liver Ellen
  13. Some of my favorite lines: Catherine Deneuve, the gorgeous French actress, on dieting: "I'm at the age at which a woman has to choose between her face and her *ss." Woody Allen, upon being asked whether he hopes to achieve immortality through his work: "No, I'd like to achieve immortality through not dying." Jean-Paul Sartre: "Partir, c'est mourir un peu; mourir, c'est partir beaucoup." [To leave is to die a liittle; to die is to leave a lot.] Ellen
  14. Hi Maddie. Welcome aboard. I have Stage 4 'adenocarcinoma with BAC features'. Early on, before I knew anything about BAC or that I had BAC features, I opted for no chemo or lung radiation. My reason was that, no matter how long I was going to survive, the median difference in length of survival between those doing everything and those doing nothing was, in my opinion, trivial (like under two months). That was 18 months ago. Some BAC cases are 'indolent', i.e. slow-growing, and it seems that's my case. And it turns out that those are just the cases that are least responsive to chemo (since chemo goes after fast-dividing cells), so it looks like I made the right choice even aside from the trivial difference in survival that I based my decision on. I suspect that's why your onc suggested Tarceva or nothing -- Tarceva doesn't work like ordinary chemo drugs. (Not all BAC cases are indolent, which may be why your onc started you on conventional chemo. I don't think they can tell at the outset which BAC case is more indolent and which is more aggressive.) You are fortunate in that your cancer is confined to the lungs. I already had mets to the lymph nodes and bones at dx, which is why it's adenocarcinoma with BAC features and not pure BAC, since pure BAC isn't supposed to metastasize outside of the lungs. And indeed the cancer in my bones has been spreading consistently and significantly since dx. Btw, the main onc on cancergrace.org, Dr. West, happens to know a lot about BAC -- I heartily second (third?) Ned and Judy's advice to check out that website. Ellen
  15. Definitely brain. Courage just gets you into trouble and, if I didn't have a heart, I wouldn't have to worry about cholesterol. Ellen
  16. Judy, what kind of dementia is it when you remember a character and who played it in a minor TV show over half a century ago -- but forgot to take this morning's Lovenox shot (which you've been doing every morning for the past 18 months)? Scary. Going upstairs to take my shot (since it'll soon be time for the evening shot). Ellen
  17. Hahahahahaha!!! I love it! Thanks! Ellen
  18. Judy, you're too kind. Actually, I've never heard of half the characters/actresses mentioned in this thread. (I had to google Peg Bundy, for example.) But those early TV series are deeply etched on my brain. Apropos, didya hear that Gale Storm (My Little Margie) just died at 87? Gack. Ellen
  19. First, who doesn't remember 'Mama'? The father was Lars (Hansen?), and the children were Nels (Niels?), Katrin, and Dagmar. Dagmar (Robin Morgan or something like that) went on to become a bigshot in the women's movement, IIRC. And of course there was Aunt Jenny (aka Aunt Yenny). But my favorite mother from TVland has got to be Roseanne. I still watch her reruns and can't believe how much I still laugh at them. Maybe you can tell that I don't have children... Ellen
  20. Hi Bohojack. Re palliative vs. curative, the minute they found your mother's brain met, she became Stage 4, at which stage all treatment is palliative rather than curative. The anesthesiologist may well have assumed you already knew this and didn't realize s/he was breaking any news to you. Hang in there. Ellen
  21. Ellen in PA

    Our TracyD

    Kasey, my warmest sympathy goes out to you and Fred and the rest of Tracy's family. Ellen
  22. Moonriver, is there any particular reason you are advertising a dental center on your posts? IMWTK. Ellen
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