Ellen in PA
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Posts posted by Ellen in PA
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There's a wonderful old movie, 'I Never Sang for my Father', that has this great line in it: "Death ends a life but not a relationship." I often think of it when I think about my parents -- mother died 2 weeks before JFK, Nov 1963, father died July 1983.
Hang in there.
Ellen
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It's not my relligion so I don't observe Lent -- but I used to work with a guy who gave up gin, his favorite drink. Switched to scotch for the 40 days. He was a very witty guy.
Ellen
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Like Ginny's son, I take my shoes off at the door and put on my slippers. However, I don't expect anyone else to do it. (DH doesn't, for example.) And my 'slippers' aren't official slippers -- they're an indestructible 20+-year-old pair of Naot sandals (Israeli ripoffs of Birkenstocks). Since my 'outdoor' shoes are Birkenstocks, people laugh when they see me switch (like, 'What's the difference?') but I like having indoor shoes and outdoor shoes. Weird, I know.
Ellen
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Hi Randy and others.
Thanks for posting this, Randy. I've been following it for several months and I believe some Americans have already gone to Cuba for the vaccine.
Just a FYI: It is NOT illegal for Americans to go to Cuba. What is illegal is for us to spend money there but that's actually pretty hard to do (since there's not exactly an abundance of things you'd want to buy and since medical care is entirely free for everyone, even tourists). My husband and I went there as tourists about 20 years ago (via Montreal, since you can't fly there from here) and my husband went again about 5 years later (again thru Montreal) at the invitation of the Cuban Ministry of Education. There were no problems with either trip. (Of course, if you happen to have relatives in Cuba, I think you can even fly there from Florida.)
By the way, the no-spending-money-there is a Treasury Dept law -- and I would think/hope the Treasury Dept has bigger problems on its collective mind now than prosecuting American cancer patients who paid for their meals in Cuba while getting (free and cutting edge) medical treatment.
Ellen
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Hi Ginny.
I'm certainly intending to be there. The 28th turns out to be the least convenient Saturday in March for me but it's doable. (Probably whichever Saturday we'd have picked would have turned out the least convenient -- I think my DH waits for me to make an appt to decide that he has to be in Minneapolis or something like that... LOL.)
Ellen
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I guess I'd pick the one I was born in. Not very adventurous, I guess.
But this reminds me of one of my father's great lines -- When I was a kid and had to do the dishes, etc, I would whine that I wished I'd been born when everyone had a maid. To which my father would reply, 'Then you probably would have been a maid.'
Ellen
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Priceless!!! (As are most of your posts.) Thanks for sharing, as they say.
Ellen
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Actually, just about everything I do now is in that category -- but maybe the most pleasureful are:
Having a dog
Eating liver, steak, and burgers medium rare (as opposed to broiled beyond recognition)
Ellen
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Hi Teardrop. I'm so sorry for what you and your sister are going through. But I must point out that you should be very cautious about persuading your sister to go to cancercenter.com, also known as 'Cancer Treatment Centers of America'. First, the '.com' in their URL tells you it is a FOR-PROFIT organization. Second, if you do a search of them on google, you'll see that they've been successfully prosecuted for false advertising. While they probably do as well as any other cancer center with treatable conditions, they seem to prey on very serious conditions that other (NON-profit) cancer centers recommend hospice for. If you want your sister's pain management to be the best, which you clearly do, then I'd suggest you follow the advice of others here who've been down that road and have hospice called in. And hang in there and good luck.
Ellen
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(Emphasis mine)"Beachmama"]Thanks everyone for your insightful responses. I know where I stand on this topic, but I don't have to like it. I told mom I knew that she was smoking.(she didn't deny it) I told her that I hate the way it makes her smell. (she smokes indoors and in her car). She reeks! AND THAT IS THE WORST PART OF IT. We smell after she hugs us (and my kids). It's just gross. But I do love her. I do. Just not the smoke. Oh well. Thanks again.If your esthetic displeasure is the worst part of it, then it's your problem, not your poor mother's.
Just my two cents.
Ellen
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Hi Barbara. You're from the Bronx?!? Wow, I'm from Brooklyn!
Moved to Queens in 1966 (not by choice) and to Philly in 1967 (as a new bride), but my heart remains in Brooklyn.No shoveling memories for me -- we all lived in apartment buildings and I guess the 'super' (something between a janitor and a concierge) saw to that -- we just never worried about anything beyond our four walls.
Maybe some of our Philadelphia snow shovelers should relocate to Bergen County -- this week, they started ringing the bell before 7am!
Take care.
Ellen
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Hi Sandra.
Mon Dieu, what a nightmare! Glad the worst is over and you're back home again.
One suggestion: The pain down your leg and your falling sound like what I had after botched back surgery -- mine was from iatrogenic ('caused by a doctor') damage to the L4-L5 nerve root. When I was finally able to crawl out of the house with a walker, I spent 1.5 years in physical therapy, teaching the undamaged nerves to keep me upright in the functional absence of the screwed-up nerves. I still use a cane outdoors for stability but I haven't fallen more than 2-3 times a year in the past few years. (My back saga was in 2000.) Also, the intense pain gradually subsided and I was left with the plain ol' pain I had before surgery.
So be very very careful about falling and, if the leg pain doesn't subside within the month, demand physical therapy -- it really helped me.
Hang in there and try to be cheerful -- but do be careful. And good luck!
Ellen
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Hi Barbara.
Rather than moving to Florida, you could always move to the nearest big city with economic diversity. Here in the middle of Philadelphia, low-income men are quite grateful for a snowfall so they can make a few bucks shoveling sidewalks. We've even had our sidewalk shoveled when the snow fell while we were away from home since the guys know we'll pay them when we get back. It takes a village...
Ellen
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They are now saying it takes 20-30 years or more to 'undo the damage' of smoking. So why should she quit? She clearly enjoys it so why deprive her, especially after all she's been through? What to say to her, you ask? My suggestion is: 'Here's an ashtray, Mom -- you don't have to hide in the car anymore.'
Ellen
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Eileen, I'm sure you can find a Rush Limbaugh website where this post would at least be appropriate, if no less distasteful.
Ellen
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Hi Barbara and Snowflake.
Barbara, I just wanted to say that I read all your news posts and they are among my favorites on this board -- and I fully realize you aren't endorsing them! Thank you for the trouble you go to to find them and post them. Btw, try not to worry too much about your smoking kids -- life is a crap shoot and nobody knows what the future holds. Case in point: my mother, a never-smoker, died at 57 from a tumor in the trachea. There was no autopsy so we never knew if it was malignant or what kind of cancer if it was but I now suspect it was some kind of BAC lung cancer. And my father smoked from age 10 till his death at 83 and never had a trace of lung cancer. (And, no, it wasn't 'second-hand smoke' that killed my mother since my father worked 6 days a week, leaving the house at 7am and returning at 9pm -- he spent very few waking/smoking hours in her presence.) Go figure.
Snowflake, I joined this group near the end of Dean Carl's life and didn't know about his smoking but I related to and agreed with everything else he said. And thank you for your tolerance -- it's much appreciated.
Ellen
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Hi Barbara.
I was in NO WAY irritated at YOU! And I'm really sorry if that was how I sounded! I just get angry at all the anti-smoking literature that throws around 'facts' with no noticeable evidence and pulls numbers out of their you-know-where. The fact is, the number of smokers has dropped precipitously -- and the number of lung cancer cases continues to rise. And they keep extending the time they claim it takes after quitting smoking to cancel the 'danger' -- to the point where the average person won't live long enough to reap the supposed 'benefit'. There's a lot of b.s. out there on this subject but I'll quit ranting for now. I'm really sorry if it sounded as tho I was mad at you.
Ellen
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This is really extremely biased, as all the smoking propaganda is. For someone like me with Stage 4 lc who is not undergoing chemo/rad and who has no breathing problems whatsoever, there is actually less reason to quit smoking now than ever before in my life (and I've been smoking since 11, 54 years ago this coming spring). I no longer travel, I no longer walk my dog, I no longer have anything to look forward to -- smoking is perhaps the greatest pleasure left to me and I shall continue to smoke so long as it is a pleasure. (Yes, I thoroughly enjoy each and every cigarette and always have.)
And, just for the record, my type of cancer is not the kind statistically correlated with smoking.
Ellen
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Hi Claudibird. I'm so sorry to read of your mother's situation. I think the drug companies and the oncologists have spread this (lucrative-for-them) notion that 'fighting' means to fill ourselves with the poisonous substances called 'chemotherapy' until we die. Perhaps someone could tell her that feeling as well as she possibly can and having as much pleasure as she possibly can in this chapter of her life can *also* be seen as 'fighting' and she wouldn't be letting herself or anyone else down.
Just my two cents. Hang in there.
Ellen
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Hi Carole. I'm so happy you're back in the saddle again. And that Inauguration party sounds incredible -- you are truly amazing!
Re Lovenox and clots, I went for my monthly onc visit on Tuesday and they took blood as usual and then, after I'd seen her and while I was having my monthly Zometa infusion, they came back and announced they needed more blood because the blood they'd taken had 'clotted'. HUH? I asked how that could be with two daily Lovenox shots and they just shrugged. I suspected they'd just screwed up and made up the clotting story -- but now I wonder. Oh well.
Hang in there and keep up the good work.
Ellen
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Hi Bucky. How long ago did you do the radiation treatments? I had palliative radiation for bone mets on my pelvis and a vertebra. The vertebra stopped causing pain (sciatica down the right leg) halfway through the treatments (14 in all) but the pelvis didn't stop hurting till several weeks after the radiation was done. So hang in there -- ya never know.
Good luck.
Ellen
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Hi Ceedee.
I will second Ned's advice about ibuprofen. When I was very uncomfortable from bone mets, I was given Oxycontin and oxycodone and Percocet -- and none of them did anything for me. However, 800 mg of ibuprofen three or four times a day worked beautifully. (If you try it, you should take a healthy dose (20 mg) of famotidine (the generic name for Pepcid) with it so you don't damage your stomach.) Good luck.
Ellen
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Hi Diane.
Re Tarceva, that was one of the possibilities my oncologist suggested early on but she assured me it, like ordinary chemo, was purely palliative at my cancer stage (4), so I asked her what symptoms she thought I had that needed 'palliating' -- I had no symptoms -- and she said 'You have a point.' I've since agreed to monthly infusions of Zometa, which is a bone strengthener, not a chemo, in order to try to avoid fractures to bones weakened by metastases, but that's the only treatment I do. And it has no side effects (that I've noticed). Oh yeah, and twice daily injections of Lovenox, to prevent clots and pulmonary embolisms.
As for how I'm doing, I'm doing ok. Certainly not as energetic as I once was and I've pretty much given up long-distance traveling (which I used to do a lot of), but my breathing is still fine, no cough, no pain, and I still gain weight the minute I go off my diet.
One thing that has helped me enormously in dealing with the emotional part is that I already had a long-standing patient-doctor relationship with a great psychotherapist and talking with him about all of this has been enormously valuable.
Hang in there and good luck.
Ellen
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Hi Diane. Welcome to the place no one wanted to be...
I have adenocarcinoma with bac features. Unlike (most) pure BAC, mine has metastasized to the bones, lymph nodes, and a salivary gland. But like (most) pure BAC, mine seems rather 'indolent', i.e. slow-growing. I was diagnosed in December 2007 and have not done any chemo or radiation (except rx to some bone mets). And I feel fine. Subject to change without notice, to be sure, but it's good while it lasts.
Btw, I believe the reason (most) BAC doesn't respond very well to chemo is that chemo works by killing fast-growing cells (which is why it kills hair) but, if the cancer is very slow-growing, the chemo doesn't select and kill it. I didn't know that when I refused chemo -- guess I was just lucky.
Hang in there. NOBODY knows how much time they have left but lung cancer has the virtue of reminding us to make the most of the time we have.
Ellen
Getting to Know You - Thursday, February 26
in JUST FOR FUN
Posted
Wow, I see I'm in good company here! I'd definitely take 'em out to a nice restaurant since the last time I cooked was in August 1971. I'm not making this up, as Dave Barry would say.
Ellen