| Author | Message | ||
     Cynicalgirl Citizen Username: Cynicalgirl Post Number: 2563 Registered: 9-2003  |
kmk, you are so-o-o RIGHT!! I read those books. Absolutely!!! Maybe greenetree should read the one where the mom (elderly woman's daughter in law) takes up with the actor!!! | ||
| kmk Supporter Username: Kmk Post Number: 1120 Registered: 5-2001  |
Cyn, Did you read the one where the grandmother's dark past is revealed? It did humanize her a touch. Greenie - hang in there and take copious notes. Ms. Perry manages to make a living describing the looney behaviors of what could have been her own GMF! It is all fodder for your novel. | ||
| greenetree Supporter Username: Greenetree Post Number: 7127 Registered: 5-2001  |
So, I never let you know that mom made it there and back just fine. She's still exhausted from her trip (who wouldn't be?) but had a grand time. We've invited her here at the end of April. She's never seen my brother's house in the Hamptons, so I figure I'll pick her up, take her to his place in the city & they can go out there for the weekend. My brothers are grumbling about her getting another brain PET. She really doesn't want to know, but if there is a chance that gamma knife could make a difference (if there is actually a problem), it may be something to consider. I'm just so afraid of approaching it with her, since she's having a good time. I must do more research. The current standard of care is not to do a repeat PET after WBRT unless there are more symptoms. I need to find out why. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 2570 Registered: 9-2003 |
Could it be as dopey as money? I know that for Curt, they'll pay every 3 mos, period and it has to be coded a certain way. I no longer have much respect for "standards of care" which too often look like ways of avoiding tests. Understandable, but. I'll not forget that when Curt was diagnosed with his rectum and colon cancer about 6 years ago, it was while he was in year 2 of a colonoscopy cycle. He'd been going annually for 5 years like a good boy, but since no polyp found within that period had cancer, he got bumped to an every 2 year cycle (despite family history). Wouldn't you know it, within the 2nd year fast growing cancer. | ||
| greenetree Supporter Username: Greenetree Post Number: 7138 Registered: 5-2001 |
Random thought triggered by another thread. My mom could be what's known as a "broad". People don't generally screw with her. The DCH thread reminds me that she taught me everything I know about negotiating and getting things on a "man's terms". Even when people see a tiny, female, pushover coming thru the door, don't let them see you sweat and leave them wondering what the hell just happened. Talked to the nurse at the radiation office yesterday. She's working on an answer for why we wouldn't do another PET of her brain. I'll give her until this afternoon. | ||
| greenetree Supporter Username: Greenetree Post Number: 7144 Registered: 5-2001 |
OK. Turns out that the radiation oncologist isn't following her anymore. "There's nothing more that he can do". She can't have any more brain radiation (we knew this) and they don't do gamma knife surgery there (we did not know this). Blah, blah, blah. I've done all the medical journal research. I can't find anything, which leads me to believe that there is a reason for not doing routine PETS. I need to know that reason. I just have a couple simple questions: how effective/what are the repercussions of gamma knife surgery after WBRT in recurrent brain tumors in SCLC? If gamma knife can be effective, why would we wait until she is symptomatic for brain recurrence to do the PET? Wouldn't it be better to catch it early? Trust me; it's simple. I think that the docs are not used to someone who isn't willing to accept/has too much knowledge to settle for "we don't generally do that". They can't cope with the fact that I am not asking for miracles or a way to save my mohter. I want her to be comfortable and functional for as long as possible. And that means having all available information so that we can choose tests and procedures. Or choose nothing. But choose wisely. I finally called one of Normal Guy's childhood friends who is a surgeon at the Cleveland Clinic. They have a great cancer program there and I was saving this phone call for when I couldn't get an answer anywhere else. I called his office, told his secretary that "I am an old friend, Greenetree. Can I leave a message for him to call me back"? Dontcha know that she put me on hold and two seconds later - he picks up. I explain the situation (he knows what's going on) and my specific questions. He tells me that he is going to have a leading gamma radiation oncology surgeon call me. If I don't hear from this guy in two days, call him back. My phone rings one hour later. It's Gamma Doc. He answers all my questions. He gives me his direct number. He stays on the phone with me for 10 minutes. It shouldn't be this friggin' hard and this kind of info should not be available only to those who are lucky enough to have some strings to pull. Oh, gamma after WBRT does not have great outcomes. Doing the PET before there are symptoms would only serve to make her last few weeks of full functioning very depressing and horrible. It wouldn't make a difference to wait on gamma until she showed symptoms. Let her live in peace and have fun until she can't. That's why we don't do the PET now. How hard a question was that to answer? On another note, which is more shallow and selfish: Feeling rejected if no one takes your "good" stuff from you Scavanger Day pile? Or being jealous that your neighbor just lost her 90-something y/o mother? | ||
| wendy Supporter Username: Wendy Post Number: 2276 Registered: 5-2001 |
How about giving us a third option since neither of the above seems to point to shallow and selfish on any day Greenetree and particularly today. | ||
| bets Supporter Username: Bets Post Number: 22908 Registered: 6-2001  |
I wish I'd known it was scavenger day in your neighborhood, I would've checked it out! And never feel guilty for wishing more time with your mother (which is what you describe above). It's normal. | ||
| Eats Shoots & Leaves Citizen Username: Mfpark Post Number: 3211 Registered: 9-2001  |
"Feeling rejected if no one takes your "good" stuff from you Scavanger Day pile? Or being jealous that your neighbor just lost her 90-something y/o mother?" She put her 90+ mother out in the Big Garbage pile and someone actually took her?! | ||
| wendy Supporter Username: Wendy Post Number: 2282 Registered: 5-2001 |
Eats -  that somewhat made up for the fact that I now realize you're a Red Sox fan | ||
| greenetree Supporter Username: Greenetree Post Number: 7146 Registered: 5-2001 |
You are one sick puppy. Which is why I love you. Her husband started putting out her mom's stuff. One was a beautiful old bookcase that needs refinishing. I wondered how long it would take her. Sure enough, just as some guy was putting it in his van, she came flying out the door and rescued it. When she found her husband in the garage, the whole neighborhood knew it. Hmmm. Think anyone would take GMF if I glued her to a really nice chair? It would be worth sacrificing a chair. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 2578 Registered: 9-2003 |
You'd have to wrap her in a mink coat and put a stack of hundreds between her teeth. I hear you only too well on the 90 something mother thing. | ||
| SoOrLady Citizen Username: Soorlady Post Number: 3202 Registered: 9-2003 |
They might take her.. but they'd know where to bring her back. | ||
| greenetree Supporter Username: Greenetree Post Number: 7150 Registered: 5-2001 |
Crap. Good point. I'll put her in front of someone else's house.  | ||
| Bob K Supporter Username: Bobk Post Number: 11142 Registered: 5-2001 |
Gotta ask. When you Mom went to Chicago, did she go along with the wheelchair ride? I am betting she didn't, but fell asleep in the car on the ride to your brothers.  | ||
| greenetree Supporter Username: Greenetree Post Number: 7153 Registered: 5-2001 |
Nope. You'd lose. Not only did she take the wheel chair, but she said (and I quote) "You were right. I'm glad I got the wheel chair". | ||
| kmk Supporter Username: Kmk Post Number: 1133 Registered: 5-2001 |
Greenetree - FWIW we are experiencing similar doctor/patient lack of communication as well. I haven't posted about this yet but my father-in-law has been diagnosed with cancer of the esophagus. This is no typical patient mind you - he is a radiation oncologist! He is a past president of the National Radium society and he worked at Los ALamos in the 60's to further the field. He is no spring chicken - he is 86 - but up until now he has been a world traveler and regular cocktail party attendee. I won't go into all the detail but even with the entire Hospital of the University of Pennsylvania literally bowing and falling over themselves to "cure" him - there have been some enormous errors. I guess medicine is still very much like the auto body shop...you make a guess, try something and see if it works, if not you try something else! I really, really want to focus on quality of life issues right now. How dare they waste his precious time with trial and error treatments that cause him so much discomfort!? (OK I feel better now.) | ||
| BGS Citizen Username: Bgs Post Number: 886 Registered: 10-2003 |
kmk= life sucks sometimes...hope that something occurs that redeems your father in law's quality of future life.... B | ||
| greenetree Supporter Username: Greenetree Post Number: 7172 Registered: 5-2001 |
Kmk: again, I hate to see a new member. Although part of me feels a bit sorry for your f-i-l's docs; I'd hate to be the youngun' in charge of his care. Baby Bro bought a ticket for Mom to come visit at the end of the month. Actually, I got his credit card number and did it; the auction for the information will start shortly. No limit and it will probably take him about a day to notice. Anyway, I had wanted to have a small MOL f2f at my house for those of you who have been so supportive and I think would enjoy meeting her. Unfortunately, her grandchildren won out over you all. I think that flying out Friday afternoon, bringing her out here Friday night and taking her to my brother's house on LI Saturday morning will be too much for her. She'd be asleep by the time people got to my house. But, she did tell me that she would loved to have meet you guys. She had lunch yesterday with a good friend, the good friend's good friend and the good friend's sister. There were some other women in the restaurant who know my mom (talk about Ladies Who Lunch). "X and Y both came up to me and told me that I looked so much better than they expected. Why does everyone think that I'm dying? I don't think I'm dying". "They just don't know what else to say". | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 2588 Registered: 9-2003 |
Is there any chance she's right? Old wives' tales suggest that people know. I made Curt a little crazy last summer, and in the fall when he was pretty much near death. Granted, I was quite freaked out during late summer and fall (though, like pains of childbirth, I have trouble remembering it). I would get on these jags when I had no idea what would happen next; I'd ask him, "What do you think? Do you think you are dying? Do you feel like you're dying." Stupid me, I'd be asking this of a barely animate man weighing less than 100 lbs who you could barely detect as a lump under a blanket. He'd croak, "No-o-o I don't think I'm dying," and sometimes get a bit disgusted with me. He never said "I don't know." I contrast this with my father's last moments. He was in the ER (I didn't see this, but my sister was sitting outside the door of the room). In his last gasps, with a bunch of people working on him with paddles, shots and God knows what, he said "You better hurry up doc, I'm going, I'm going, I'm going..." Gone. | ||
| greenetree Supporter Username: Greenetree Post Number: 7174 Registered: 5-2001 |
It's interesting. Baby Bro and I were talking about this the other day. It seems like a lot of people, including her docs, have given up. I kind of understand where they are coming from: they've done all that can be done, invasive or drastic treatments are not likely to have great outcomes and she is doing pretty well, living her life. Oncologists cannot afford to get emotionally attached to every patient. I know this; I worked in HIV in the early days, when "long term survival" was two years. I didn't see patients directly, and I had to get out after 10 years. It's probably hard for people to ignore that stats and news that get thrown in their face every day. Peter Jennings, Dana Reeve. Etc. I think that people probably do know. When mom says that she is not dying, she means that right now, she knows that she is limited, but that she is going to the office one day a week, driving within a 30 minute radius of her house, painting, lunching, visiting grandkids.... living. She knows that she won't beat this, but also does not feel like anything is imminent. She's not dying now. I've learned a lot from her and a lot from Baby Bro's refusal to accept that which didn't make sense. I worry about her being weak and her memory loss (cancer? chemo? radiation?), but unless she forgets how to get home from the store or forgets a contract at work that could get her into trouble, I let it go. I no longer assume that she's "imminent" either. After all this, I really believe Curt and Mom. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 2589 Registered: 9-2003 |
Well, you know the old saw about we're all dying, it's just a question of when. Yep, I pretty much have to believe them. Cuz, smart as we are, we really don't know -- and I say that not coming from some dippy, mystical place, but we really don't. We're not that smart, things aren't that predictable. I actually found myself thinking of applying for passports for us (mine is way lapsed, Curt's leftover from the military and 1969). For me, that implies we might take a trip to Wales (which he'd love to do) when he gets a stronger. Screw financial planning -- there's room on the credit card. Hard to take seriously those kinds of ads about one's future when you live where I live. Let's Live for Today-ay..sha la la la la, live for today.. | ||
| greenetree Supporter Username: Greenetree Post Number: 7175 Registered: 5-2001 |
Hey - why not plan it. There's always trip insurance. This year, I have booked our P-town vacation rental; something I did not do last year. We were also going to go away in August, but that fell thru. We'd postponed doing our bathroom, but I think that (after I get around to doing the taxes), we may plan that as well. What the hell...... Of course, I don't want to go too far the other way. I have friends where the wife was diagnosed with a very advanced case of bone cancer. Follow-up visits to specialists found that it was not cancer at all, but a pretty rare chronic condition that can be controlled with meds. After the scare and realizing what it would mean to lose her, they went into "live for today" mode. Both retired (in their late 40s), vacationed a lot, bought all new furniture, etc. When they were on the verge of foreclosure, they both went back to work. Those kind of balls I will never have. | ||
| Eats Shoots & Leaves Citizen Username: Mfpark Post Number: 3233 Registered: 9-2001 |
Those kind of balls I will never have. Hmmm...my guess is you will never have any kind of balls.....unless you are more like Mem's Friend than I think. | ||
| greenetree Supporter Username: Greenetree Post Number: 7178 Registered: 5-2001 |
Didn't you ever wonder why I don't post under my "real" name? | ||
| BGS Supporter Username: Bgs Post Number: 907 Registered: 10-2003 |
Greenie- I will have to speak to you and TS....is that PTown trip at the end of May? Daughter #1 goes with her friends every year. Would love for her to meet you both. Good for your Mom--living for today is what it is all about...who knows who is going to be here tomorrow? Not I. Cyn-go for it...a trip might be just what the doctor ordered!!!! Good thoughts continue for the Mom, Curt and all of you supporters that they could not be without.... :-) B | ||
| las Citizen Username: Las Post Number: 1509 Registered: 10-2003 |
A trip for TS would be the perfect opportunity for her to practice her knitting. She's been riding the train with us the past few days and - well let's just say I hope you like argyle, G'tree.  | ||
| SoOrLady Citizen Username: Soorlady Post Number: 3218 Registered: 9-2003 |
It's great that Greenemom is in a place where she feels good enough to get out and live her life... that "I'm not dying today" feeling. I am SO hopeful that after this round of chemo and experimental meds my BIL will be able to find that place for a time. (There was a weight gain last week, when he weighed in he topped 150!). Cyn - get the passports. Edrych ymlaen at Bywyd! | ||
| Debby Citizen Username: Debby Post Number: 2264 Registered: 5-2001 |
Yeah, what SO Lady said! Definitely make the trip. It's happiest future thing you've ever posted about. | ||
| greenetree Supporter Username: Greenetree Post Number: 7183 Registered: 5-2001 |
Moments ago.... Ring, ring. Hi Mom. Hi. I just came from the doctor (weekly visit) and am on my way to pick up GMF for a late lunch. She's been whining that she hasn't seen me. How was the doc vist? They're putting me on an antibiotic because I have a whopping 99 fever and my white count is up. I told the nurse I've been taking immodium, but they aren't worried because I ate a 3 pound lobster with drawn butter and a plate of fried calamari. That'll do it. Hey, did I tell you that Super K has shingles? No. Mom, have you had chicken pox? Yes. I've been around her all week. She had it when she picked me up at the airport last week. Besides, her doctor told her that it wasn't contagious. Did you tell the nurse that you've been around someone with active shingles? No. What can I do about it now? Besides, they're giving me an antibiotic. Mom, shingles is viral. Antibiotics won't help it. Where is her rash? On her •••. Well, stay away from her •••. And don't let her use your toilet unless she wipes it with bleach afterwards. Oh for godssake. I'm not going to tell her not to use the toilet. Mom, will you please call the doctor and tell them that you've been around someone with chicken pox? Oh, all right. Agita, she's giving me. One can take this "I'm not going to give in to my illness" thing a bit too far. | ||
| SoOrLady Citizen Username: Soorlady Post Number: 3219 Registered: 9-2003 |
oy... I believe shingles is contagious until it "roofs" over. Greenemom really has to steer clear of Super K's ••• and anything with which it has come in contact. Good idea to let the Doc know. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 2597 Registered: 9-2003 |
Good lord...!! I know I spent much of the fall/winter trying to keep Curt away from any bugs, etc. Got him a 'flu shot, but still. Yeah, shingles is exactly what she doesn't need.. SoOrLady: I don't speak it, but I recognize it. And remember talking to a relative of yours about it. Yep, one of Curt's life dreams is to visit. Over here, yesterday a little crappy. Well, not -- and that was the problem. The last 3 Fridays running we've gone out to dinner, which has been wonderful. He eats like a pig (appetizer, dinner (meat/starch), dessert. Truly a site to behold. Anyway, this past Friday he got some appetizer involving lentils and garlic sausage. Ate it all up. Well, most of Saturday into this a.m. he's had a mess of pain, no doubt due to a blockage. So I did household stuff and fretted much of Saturday. Every time something ails him in the gut I'm sure it's Return of the Living Cancer. This time, appears to be a blockage. Curt was "replumbed" as part of his surgery and he is particularly prone to such things. He avoids rigorously all of the stuff the rest of us eat for health, specifically anything like roughage or stuff that doesn't break down pretty well in the stomach. Lentils, well, I suspect that eating the whole dish of them was not good. He is on the good ol' boy diet, soft bread, tender meat/chick/fish, mashed potatoes, rice, gravy. No parboiled veg, raw veg, salad. This stuff can be hard to remember cuz it's so counter to way much of us try to eat. Can eat beans, beans soup when mushy cooked. But not lentils, or the membraney part of oranges and similar. I'm sure this is of ltd interest, but felt like recording it for posterity! | ||
| N. Bonaparte Supporter Username: Wendy Post Number: 2310 Registered: 5-2001 |
As you should - record it that is. If I remember correctly it was your amazing documenting/charting of Curt's weight loss that made you and eventually the doc realize that he had to get off the fentanyl (sp?). | ||
| greenetree Supporter Username: Greenetree Post Number: 7234 Registered: 5-2001 |
Happy Holidays to all. Cyn - I hope you get your plant this year. And if you don't, you'll get it next year, I'm sure. I have the most amazing friends. We've done Seder at our home for the past 7-8 years (my sis-in-law calls it the Gayder, but that's a story for another day). Anyway, Mom has always wanted to come ("I want to see the gay strawberrry") so we decided that we'd hold seder on the weekend this year so that she could make it (the logistics were too difficult to get her here in the middle of the week). But, she has chemo tomorrow and it's Easter (Catholic friends always come) and my father had long-ago made plans to be here visiting last weekend. I figured, a year off would be good; I wouldn't have to use a vacation day to cook nor worry about prep time because we'd be out in the Hamptons with my dad the weekend before. I let the usual Gayder/Seder attendees know and the reasons why. Our wonderful (Catholic) friends called us a couple weeks ago and said that they didn't want me to miss it. So, they kept it small, invited another couple and held Seder at their house. We just brought the Seder plate and Haggadahs. How much love is that? I remember when my mom first got sick, being amazed at how close and loyal her friends were. Realizing how rich her life is and telling her that I wanted to have those kinds of relationships to cherish. You will, she told me. It takes time. I see now that I do have that. In so many people; in many of you, too. Sorry. Didn't mean to get so icky. In a major act of rebellion, I wore sneakers to work today (my foot hurts). And on Tuesday, I got to listen to one of the admins one cube over break up with some guy on the phone ("it's not you, it's me" - didn't realize people actually said that). For someone she isn't interested in, she sure was on the phone for a long time ("I really like you, but it's just not a good time"). It sounds so fake. I'm trying to remember how I used to break up with people. Oh yeah - I wasn't very nice or courageous. I just didn't return phone calls. I think my lowest was when a woman from DC I was dating called to say that she'd be in NY for New Year's, I told her she'd better book a hotel room soon. Lord, I was nasty. I can't believe someone married me. I think I've matured a bit since those days. | ||
| LilLB Citizen Username: Lillb Post Number: 1502 Registered: 10-2002  |
Hey Greentree - you must have been in my thoughts this morning -- I was at Starbucks ordering one of those green tea frapps (first time trying it actually - quite yummy)...anyway, when I ordered, I asked for a "greentree" frapp... I got a chuckle out of it.  | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 2620 Registered: 9-2003 |
Hey you guys.... I've been a tad out of the loop as an issue arose this week. That dinner I reported above turned into a megillah (sp?). Spent a lot of Wed eve at SMG Urgent care as he had bad pain, no poop. Anyway, ended up with him getting an X Ray, and a CAT scan. Talk of adhesions and so on. Well...being me, I read a bunch online and got him on (1) mineral oil, (2) apple juice, (3) hot epsom salts baths. Either the food block naturally gave up, or items (1)-(3) helped, but anyway now things are better. BUT! I had a coupla lousy days wondering if he was gonna have surgery... No fleurs this year, greenetree, I don't think but it being a better Easter than last, I don't care like I did. I keep telling myself I'm gonna reread this whole durned blog but haven't as yet. | ||
| Tom Reingold Supporter Username: Noglider Post Number: 13657 Registered: 1-2003  |
That sounds bad, but "no surgery" sounds good, too. | ||
| greenetree Supporter Username: Greenetree Post Number: 7245 Registered: 5-2001 |
Lil - it's subliminal. I made up my handle years back, realizing that some day in the future, green tea frappucinos would become popular and people would go around saying my name.  Cyn - ain't that the worst. It's probably the friggin' fentanyl. My b-i-l & mom went thru that. Glad it resolved a la natural. I've re-read the entire blog twice; the last time was a couple months ago. You definitely have to be in the right frame of mind. But, I am glad that this is a better Easter. And wonderful weather, too. | ||
| red Citizen Username: Redy67 Post Number: 5321 Registered: 2-2003  |
I don't know how you guys do it. Having such a "brave face". It is getting easier for me with my GF as time goes on, but I keep crying when I am on the phone with her or her hubby. (silent tears) I can't even begin to phathom being there with her, and not breaking down. Cyn and greenetree you two are absolutely amazing women. I knew that before, but going through it now it becomes even more clear. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 2622 Registered: 9-2003 |
I daren't ask this question anywhere but here. Just not up for the hub-bub for now. I understand the new smoking ban is in force, and I know it affects bars and restaurants. That's fine, and certainly I'm not going to defend smoking as a healthful habit for one's self or those around one. Exactly what is the story in Maplewood with smoking outside of bars and restaurants? Meaning, if you go out to eat, and wish to step outside and have a cigarette, how far do you have to go (or where?). I ask primarily because of Curt, though obviously we both are still smokers (at least for now). He's less willing and able than I to forbear. And, the last thing I want to do is take him out to eat, have him go outside, and then either get busted or railed at by passersby. Rest assured that we almost never went to St. James Gate, Trattoria. Mostly thinking about Cent'anni's and Samurai Sushi. Ultimately I can always take him to places in more blue collar towns where smoking outside yet near the restaurant is more acceptable. Really, any specifics on this appreciated. Any lectures -- however kindly meant -- not at this time, please. |
