| Author | Message | ||
     greenetree Supporter Username: Greenetree Post Number: 4603 Registered: 5-2001  |
Cyn - yeah, she's doing baked potatos with so much sour cream and butter that they look like Cream of Rice. But, she's eating so I ain't complaining. She did get progressively better once I took her for fluids last Wed. I suspect part of it was nerves & being alone. She still won't do Boost, but the health-food gatorade is almost as good. I figure if she gets enough calories & fluids from whatever source, it's OK for the short term. Last week, when I got there, she hadn't eaten in days. She does have Rx "poop juice" & suppositories. My favorite is the letter we got from Aetna the other day telling us that she's over her limit on radiation & will have to pay out of pocket. Oh darn. She's been doing it for fun & now she'll have to stop. She's also gotten a prescription for a dissolvable anti-naseau drug that is very expensive. She needs to take 3 a day, which means that 30 is a ten day supply. Aetna OK'd 36 over 90 days. Tomorrow, when I have the energy to deal with these people, I will call and tap dance on someone's head. Mom was dissappointed in me that I told dad's friends about GMF's little "fake my own death" stunt last week. "It's not nice to talk about your grandmother to strangers, even if she is an asswipe". "Why not", I asked? "Frank McCourt did it & won a Pulitzer Prize". "You have a point" said my mother. | ||
| las Citizen Username: Las Post Number: 195 Registered: 10-2003 |
Greenetree, you're right. It's NOT your fault vanilla ice cream has to be eaten with chocolate sauce and almonds. Hugs. | ||
| CLK Supporter Username: Clkelley Post Number: 1112 Registered: 6-2002  |
The Aetna situation just makes my blood F***ing boil. I just got back from Canada where I had a lovely chat with my Canadian uncle about the Canadian health care system (among many other interesting things - we got along great). They think we are utter barbarians in this country, and frankly I have to agree. | ||
| greenetree Supporter Username: Greenetree Post Number: 4637 Registered: 5-2001 |
Well, I called Aetna. I "just" need to launch a dispute for the radiation and it will get covered after the utilization review people get more info from the doc. And I "just" have to have the doc call the Aetna pharmacist and explain why mom needs the drug to get that covered, too. Now, keep in mind that I can do this only because I had mom sign a confidentiality form that allows me to do this. Otherwise, in her spare time, she would be fighting this herself. I really, really hate these people. Oh - Aetna doesn't cover an ambulette, so if she needs to get to the doctor, she'lll have to pay. They'll only pay for an ambulance to the ER. Did I say that I hate these people? But - the good news is that the tumor is shrinking. We started at 3.5 centimeters & are down to 9 ml. I drew it on my desk blotter. Very impressive. Poptart guy is there taking care of mom for this round of chemo. This time, I made sure she was well stocked with food she can actually eat. I told her that if she runs out of the "healthy Gatorade" to have him take an empty bottle to the store with him. She said he could probably remember. I reminded her not to underestimate him. As we were discussing this, he called to say that he couldn't find the store she sent him to. Please keep in mind that it is next to the drug store, where he has been a million times. And that to get there, you turn left out her drive, go to the end of the road, turn left again and drive one mile to the 3rd trafic light. Yes- he needs to take the empty bottle so that he buys the right stuff. CLK - you doing OK? | ||
| Tom Reingold Supporter Username: Noglider Post Number: 7650 Registered: 1-2003  |
Tumor is shrinking! YEAH! | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1507 Registered: 9-2003  |
God, I hear you on the ambulette, and the care needs peripheral to the Root Problem that require knowlegable, concerned attention. Insurance don't cover it, and they kind of assume everyone has a network of friends 'n family to assist. Which is fine if you have one, or everyone is standing around at attention as per a soap opera, waiting to serve "Doctor." Real life being rather different, and employers needing to be placated, this is tough. I have not yet confronted any limitations with the insurance, though I anticipate them in future. My husband is on hiatus from chemo as he gets unrelated issues seen to, that were exacerbated by the chemo, to wit: a degenerative disk that was causing unspeakable pain. Pain, acourse, makes you weary and not want to eat. Along with the chemo, things had sucked. Now, how'ere he's had one mondo trigger point steroid injection in the ol' lumbar region that's made a huge diff. Another next week. Probably 3 in all. Now, he's a skinny boy but perkier. He can drive himself to see various docs at the Millburn office, and he can drive to Overlook. But, these trigger point dealies and the odd endoscopy are appointments that require not just a taxi, but someone to come and sign and release -- a.k.a. me. Fortunately, his irascible old best friend will drive up from DE next week and take him to one. I can only take off so much work, etc. Like you and your mom, greenetree, my husband and I have an "interesting" relationship. Mostly we let each other be ourselves, me orderly and somewhat corporate, him not. I did reach a point a couple of weeks ago (a point I have to reach verbally before he responds) in which I reamed him a new one (pretty funny when you stop to realize he doesn't even have one in the usual sense) regarding his appearance. Now, through the ages, I've tried not be pushy about hair cuts, beard trimming and etc. and mostly wubbulous world of work has taken care of that. But he was looking like a cross between Charles Manason and Saddam Hussein: furry ears, fuzzy beard with stubble down the neck, hair a mess and walking around in clothese way tent-like despite my having bought new ones. Smoking a lot (tho this I can understand -- let's not discuss). Extremely bad for my head these visuals, and awful for our kid. I pretty much hollered at him, and cried and alla this stuff. Sarcasm, you name it. Felt bad later, but well...Anyway, later that week he got himself a haircut, beard trim. Put on clothes that fit, etc. He's the stoic cowboy at times, I'm the righteous fishwife. What can I say? Married 13 years this summer, together 14. It works for us...! For my money, my husband is the sanest, most centered, stubborn in his values man I have ever know and I love that about him. I don't think he has a wishy-washy Alan Alda bone in his body. He's not "a walking contradiction/One part fact, and one part fiction." But he is 1/2 blue collar 1/2 "I gotta be me" art guy. An he has never not once tried to fence me in, box me in or pull any insidious guy moves on my head. I adore him (though he makes me crazy sometimes). He has integrity, which I find rare. Glad as HELL that the freakin' tumor is shrinking. That is very good. On my end, husband had an endoscopy (I die a 1,000 deaths in the waiting room during these, and go to the bathroom to do some facsimile of prayer at the soap dispenser). Things looked way better rawness-wise. There had been a weensy little area that had been biopsied 3 months ago (and came up negative) and he's doing it again, but it looked good. He's on life-time endoscopy surveillance which is all they can do for these Hereditary Non-Polypsosis Colectoral Cancer (prolly spelt that mess wrong but it means People Who Make Gastrointestinal Polyps a Lot though Not 1,000s, and polyps can go cancerous) syndrome sufferers. Like weeding, the docs are always looking and clipping off any new sprouts and checking 'em before they turn ugly. No guarantees, just watching, watching, watching... Coupla weeks, they want to resume the 2 cycles (8 weeks a pop) of low grade chemo to complete the bug bombing. It will be a fun summer, but hopefully we have our moves down...I'm hoping Brad 'n Angelina 'n Jen will keep me distracted for the duration. I've even got my husband interested in it! | ||
| Lucy Citizen Username: Lucy Post Number: 15 Registered: 5-2005 |
Greenie my prayers are with you. Stay tough and whatever you do don't lose your sense of humor. It was great to see you and T S relax the other night at bunny's! We all sang Happy Birthday off key. Hugs, Lucy | ||
| CLK Supporter Username: Clkelley Post Number: 1123 Registered: 6-2002 |
Answering your question - doing OK. My husband seems hit harder than me. Little things bring it on, including that Gracie (other cat) has now taken up residence on the chair that used to "belong to" Moon Pie. But we're doing OK. | ||
| bets Supporter Username: Bets Post Number: 1845 Registered: 6-2001  |
Tentative good news is so much better than the alternative. I am sending out thunderous good will wishes to all. My problems are tiny and inconsequential compared to life struggles of this degree. I hope to see you soon. | ||
| greenetree Supporter Username: Greenetree Post Number: 4655 Registered: 5-2001 |
Bets- I am going to try and make it Thursday night. I have this vision of you standing in the shower, after the cleaners had gone, singing "I'm gonna wash that man right outta my hair".  Mopm finally got thru radiation - she finished Friday. I'm feeling very dejected today. Mom is back at the lake house, but won't eat. I think that she is depressed. I am so angry at the friggin' radiation oncologist that it is a good thing that I'm not there. I specifically told him not to talk about any procedures with mom & she told him that she doesn't like details, that this is what she has me for. When I was there week before last, I specifically asked him about next steps. I wanted to talk to him about prophylactic ICR, but he said it was premature. So, what does he do? He mentions it to mom on Friday. She was completely unprepared and totally freaked out. So, vat is das prophylactic ICR, you ask? Well, SCLC almost always comes back and 50% of the time, it is to the brain. So, people who achieve a certain (damn near complete) level of remission with radiation and chemo will sometimes get one good shot of radiation to the entire brain. It is not without risk. And, if you don't achieve that certain level of remission, you are not a candidate. This A-hole doc talks to her about it, even tho she has one more round of chemo before the next set of CAT scans (which will determine if she is eligible) can be taken. Now, she's freaking out at the thought of her brain getting irradiated. I knew exactly how I was going to approach her with the concept, but I sure as hell wasn't going to mention it until we knew for sure she was a candidate. This is the same cowboy who set her up for radition before we knew she was a candidate for that, too. Luckily, she was. Can you imagine the blow to her spirits if she turns out not to be a candidate after all this? It may be a double funeral: my mom's & the doc's. I really, really want to slap someone right now. I'm also starting to get nervous about talking to her about retiring and downsizing. I really think she cannot go back to her old high pressure life. Right now, she's so down that it's hard to tell what's going thru her head. My brother and I (Normal Bro) are going to do it together. Pop Tart Guy and Baby Bro are not allowed to talk to her about it (bull, china shop, etc.). Oh - I had to yell at Mom and Pop Tart Guy last week. She complained to him about getting crumbs in her car which Baby Bro just had detailed to get rid of the old smoke smell. I yelled at her that people who come to help her and have to eat on the run do not need to be complained about. He complained to me about what a pain she is & I reminded him that being that ill does not usually bring out people's best qualities but tends to magnify their worst. Did I mention that I need to slap someone? I am also feeling very sorry for myself because we are not going on vacation this year. I have only a handful of days left and have at least one more trip to Ohio to make this summer. I need to be by the ocean for a couple days. I suppose I can't complain because I can always go to my brother's place, but I hate the Hamptons & the traffic inolved in getting there & back.  | ||
| Duncan Supporter Username: Duncanrogers Post Number: 4569 Registered: 12-2001  |
greentree. You have my sympathy and encouragement. When my mom went down (for different reasons) it was right when I was bursting onto the Boston theater scene. I had done 9 plays in 12 months and because of my dads ill health at the time I had to take about a year off to care for them both. I was incredibly resentful for the loss of momentum that my career suffered, but by the same token, I was thankful that I was available to help. There is an amount of hindsight that will make this time not the burden it seems right now. instead of going on vacation buy GEMS! | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1522 Registered: 9-2003 |
Many doctors act more like scientists than not, which blows. They find this stuff interesting, greenetree, and forget that there are people attached. Especially so if the people seem smart and "together." Had to educate the gastro that most of us don't hear the word "tumor" and think happy thoughts. Ditto to the onco who's all excited to have our 11 year old genetically tested to see if she has the gene (50% chance) that brought this havoc upon her father. Yeah, that's what she needs right now. Not freakin' actionable information. Doctors need a kick in the butt periodically, and their lingo/ego right-sized. Especially the specialists. Ream the mother a new one in the most erudite language you can manage, preferably written. Especially if he's under 50. Needs a 'tude adjustment. And then there's the nurses/office personnel nattering on about their upcoming babyshowers and barbecues and vacations within earshot. Need a wall of privacy sometimes so you can do your sad little thoughts while everyone else be's normal. Go ahead and slap someone. Or, as I'm considering, buy a real punching bag and gloves. | ||
| redY67 Citizen Username: Redy67 Post Number: 2298 Registered: 2-2003  |
Greentree, I worked for an office some years back where there was a woman with a similar situation. She used up all her vaca, personal days, etc to care for a sick relative. The HR department let people donate vacation days to her to allow her to go as much as needed. Maybe your company can do something similar? | ||
| greenetree Supporter Username: Greenetree Post Number: 4690 Registered: 5-2001 |
This has been a rough week. Ever since the idiot radiation oncologist mentioned the brain radiation, her mood has gone downhill. Before, we had her really on track - she still needed to have her meds & liquid food handed to her, but she was taking the meds & trying. By Monday night, she had refused all meds & therefore couldn't eat. Tuesday she ended up admitted to thru the ER & the dehydration was starting to affect her kidneys. Greenetree ripped new voiding ports in many, many people. I called the family friend/doc and insisted she be started on an antidepressant and a counselor sent to see her. He kept trying to tell me that her pain is very real. "I know that. I also know that her mood is slipping and that is affecting her ability to participate in her own health care". I think I finally got thru to him. Because, when I got ahold of her oncologist the next day, the family doc had called him. They sent in social services, too. Her oncologist kept saying "but she seems so upbeat". I finally got it thru his head, too, that my mother will literally die before she shows anyone outside the family and her best friend that she doesn't feel well. She's too smart for her own good sometimes. She was mad at me at first. When I asked her on Tuesday night if there was anyone else I should call outside the usual gang, she said "would you like a list of people you can talk to about my mental health"? "No, I think I've done pretty well figuring that one out on my own". I also told her that I would not apologize for my actions. So, she's been in the hospital, whacked out on morphine. She's done pretty well. Many people with her level of radiation damage are hospitalized 3 or 4 times. This is her first for this particular reason. She's been pretty funny on the drugs, tho. I knew she was high when I talked to her on Wednesday and said "Maybe I should talk to your grandmother". Yesterday, when I asked her if she'd called GMF, she replied "You call her. I want to know what's going on in her pea brain". I also told mom how, when I called the insurance guy about her Medicare enrollment, his secretary went on & on about how she couldn't believe that mom will be 65, she thought she was in her early 50s, etc. Mom's reply? "You didn't have to tell her the truth". "Mom, I think she figured it out when she knew you were applying for Medicare". That got a "F-off". She is feeling better. She still can't eat, so they are starting her on TPN, which is a grueling process of feeding thru veins. One more chemo & we are done. It's a little scary to think about what may come next. BTW- for those who think that I am a horrible person and should feel bad that my 88 y/o grandmother is helpless and facing the mortality of her only child, let me tell you that, once again, when called to let her know that mom was back in the hospital, I got 5 minutes of how my mother has been neglectful, starting with the death of my grandfather in 1977. When I called the next day to update her on mom's condition, she started complaining about how mom's best friend stays too long when she goes to visit, because after all "she's not family". I lit into her for that & told her that I didn't want to hear anything negative about BF, since she's been a lifesaver. "Of course", she sniffed, "I'm going to go now. My dinner is cold. But I do appreciate you calling". Bitch. Someone who is near and dear to this community had a major coughing fit at Bunny's last night. She promised me that she is going to quit smoking by the end of the year. And I think she can do it - she's successfully gotten rid of all the other poisons in her life this year. 2005 is her year to be proud & feel good about herself. And she knows who she is..... | ||
| redY67 Citizen Username: Redy67 Post Number: 2383 Registered: 2-2003 |
Greentree GMF sounds like my sister. My mom is taking care of my dad who is suffering from Parkinsons and Alzheimers. My mother rarely complains, and to me is just wonderful. My mother suffered for many years with back problems, among many other things. When she asked my father for help, my dad was truly a b*stard most of the time, telling her to do it herself. Now, the tables are turned. My mom helps him dress, makes his meals, cleans the house etc. Now my dad really realizes what a true ••• he was to my mom. But back to my original point, my sister. She lives about 45 minutes from my parents. When my dad was healthy, they would take my sisters kids frequently. At least once a week for overnighters, if not more often. This still wasn't enough help for my sister. She complained that they lived so far away, and wouldn't help her out more. Unbelievable. When my dad starting to get sick, my mom told my sister she wouldn't be able to help her out with the kids as often. My sister got pissed, cut my mom off from the kids for awhile. "that'll show her" type of attitude. My parents then realized it was time to sell the house, and move into somethig more managible for the both of them. They found a house after searching for a very long time. My sister then complains, how dare they move where they are moving. It isn't close enough for her. For her to have to drive 45 minutes is ridiculous. How is she supposed to do this? She starts complaing to me. I tear into her. How can she be so selfish, not realize what she has? Look at everything mom and dad have done for you. They took the kids often, with joy, what I would give to have that. To live so close, what I would give for that. My sister relented some, for the moment. I still hear it from her. She hardly every goes to visit because it is 'too far away' On holidays my mom cooks the entire meal and brings it to my sisters house, because it is 'too much' for my sister to cook and host. God forbid she drives 45 minutes to my parents. She is a spoiled brat and doesn't realize it. Sorry to rant on your blog greentree, I just wanted you to see your not the only one with nutty selfish relatives  | ||
| greenetree Supporter Username: Greenetree Post Number: 4694 Registered: 5-2001 |
No, Red, this is the ranting place for anyone who needs to share these things! It just blows my mind. I know that just because you are related doesn't mean you get along, etc., etc. And I subscribe to the belief that the family you choose can be more supportive and loving than the one you were born with. And how great is it that most people choose the family they were born with & then add on? I've watched GMF crap on my mom & my oldest little brother (Poptart Guy) for almost 30 years. My feelings about how my grandmother treats my mom are not based on what my mom has told me (she can be a drama queen herself) but on what I see. The one thing I've told my mom is that she's waited 65 years and until she's looking at her own mortality to act on her feelings. For years, my mother has not done what she's wanted to do because "her father would have expected her to take care of her mother". Poppycock, said I. If she had treated me the way her own mother has treated her, she'd be one lonely cancer patient. And a lot is my mom's own fault. I think that taking care of my grandmother has become a habit and a known comfort zone. I really, really hope that my mom recovers enough to spend at least one Christmas at my brother's house, watching her grandkids when they come downstairs and see what Santa brought. She's never done that; it's always been "I can't leave her alone on Christmas" Mom, we're Jewish. Your grandchildren aren't but your mother is". I really don't get adult kids who expect their parents to hand them everything. I suppose you could say that the parents had a role in setting expectations, but all siblings don't grow up that way. And what self-respecting adult wants to be that dependent? | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1529 Registered: 9-2003 |
Some people are just "nasty as they wanna be" and are allowed to be, I find. I froze out my godparents about 10 years ago, when they were jerks repeatedly to my father. Was very hard for me, but a very healthy move. I had been close to them, but they were awful. I send them a Christmas card, and that's it. However, I now never get monthly calls that leave me in tears... Sometimes you ask youreself, "Would I tolerate this behavior in a friend? A coworker?" Often the answer is no, but we all make some concessions to "keep the peace." But, some are too hurtful to make, and I believe that ceasing relations can be the right thing to do. Break the cycle and all that. | ||
| redY67 Citizen Username: Redy67 Post Number: 2388 Registered: 2-2003 |
I don't think I've reached that point with my sister. We don't talk all that often, and are different as night and day, but I just can't see cutting her out. She came to visit about a year ago. We were talking about trying to become closer and keep in touch, while we were on a walk around Maplewood. Suddenlly she has to pee. We are about two blocks from my house. She says, that's okay, I'll just go here, and squats in someone's front yard. | ||
| Just The Aunt Supporter Username: Auntof13 Post Number: 1486 Registered: 1-2004  |
Greentree I'm sorry to read your having a rough week. I'm still kepping you and your mom in my prayers...  | ||
| SoOrLady Citizen Username: Soorlady Post Number: 2286 Registered: 9-2003 |
I honestly don't know how you do it Greenie. My week does not begin to compare with yours but I'm ready to jump out of my skin - brother in law started the week in the hospital... no one was allowed to tell his mother. After the 9-5, Tuesday we went to babysit our 3 great-nephews & great-niece so their parents could go to the hospital. Wed. our son & daughter-in-law wanted to spend some time with us in the evening. Thursday, brother-in-law finally told his 88 year old mother that he's been in the hospital and that he will soon undergo an operation to remove his gall bladder, part of his pancreas & a portion of his intestines..he tells her this over the phone. She calls me soon after - "how long have you known about this?" So, since she's only a block away, we pick up some Chinese and go to make sure she eats and give her someone to talk to about her son. Tonight I'm manic cleaning (just taking a break for the moment) because my mom and her sister are arriving from AZ - plane is due to touch down at 2 a.m. - she cashed in her miles and this is the only flight they would give her. She told me to send a shuttle - she's 90. I'm thinking she'll need a bit of help with their luggage, etc. I hate airlines, I hate doctors who keep you waiting and waiting and waiting. This is my favorite brother-in-law, the big brother I never had.. and it just sucks that at 63 he's so sick. Rant over - back to cleaning. | ||
| greenetree Supporter Username: Greenetree Post Number: 4699 Registered: 5-2001 |
If one more of my mom's friends calls and tells me that we should be with her, I will lose it. Do they not think I feel bad enough? Is it any of their business that if I come in again I will have to take unpaid time, which I can't afford because I am helping my mom financially? Then, they call my brothers & lay guilt trips about how she will need 24/7 nursing care when she is out of the hospital. Or that she should come live with one of us. Hello? Do you mind if we wait to see what her needs are and work it out with her discharge planner and oncologist? Does it occur to anyone that she still has one more chemo, CAT, MRIs and PETs and has to follow-up with her docs? It will be August before she can think about coming to stay with one of us (which I had already planned, frankly). Unless, of course, they think she is end-stage. I personally am not planning that right now. I actually am planning on how to help her have at least a few more months of quality life. Wherever she wants to spend it. 24/7 nursing? Before I hire an out of pocket RN at $10k a month (which I just happen to have sitting around), can I see what her benefits cover? Maybe step-down nursing care? That said, Normal Bro and I are shouldering much more than our share right now. Baby Bro and Poptart Guy are just not emotionally equipped to handle this and I don't have the emotional energy to tell them what to do. Besides, it was a disaster for Poptart Guy to be there two weeks ago. So, I called Baby Bro, whom I reached at poolside at his place in the Hamptons and said "send mom flowers". "Why does mom need flowers" he asked? He got a friggin' earful from me. I really, really don't want to come out of this experience resenting my brothers. Not because they are putting the burden on mew Normal, but because they aren't trying to do the best they can, no matter how little it is. Am I making it look that easy or something? Pardon me - I am going to go take a Xanax and buy shoes. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1530 Registered: 9-2003 |
greenetree, you are a goddess, and mear mortals and screwups are just too accustomed to you being so cool. This stuff, I find, brings out the old roles in people. It did for me with my dad's decline and death. I was in a muy ossified role as competent older sister/old maid and much was expected -- including not showing weakness, or crying. Role way reinforced by guilt tripping neighbors and relatives. "But, you've always been the stro-o-n-n-g one, your sister just can't take it." Bull hockey. I break just like a little girl... Had some times of mine lately that too, too reminded me of the past and what you're dealing with. Just buy shoes, greenetree, and good wine. Ream 'em new ones as needed. Cry 'round those you can. | ||
| greenetree Supporter Username: Greenetree Post Number: 4700 Registered: 5-2001 |
Cyn- Good times? That's great! I am vicariously going to share yours, if that's OK. SO- no one's experience compares with anyone else's. It's so hard to be that worried about someone, especially when they are special and young, like your b-i-l. Good thoughts going out for you & him. And, if you are anything like me, your house is really, really clean by now. JTA - that's so sweet. Thank you. It's good to feel like people hear. | ||
| las Citizen Username: Las Post Number: 206 Registered: 10-2003 |
"$10k a month (which I just happen to have sitting around)" Kitten, I'm confused. If you have all that money sitting around why don't you just hire the nurse for your mom so you can give yourself a break?...  | ||
| greenetree Supporter Username: Greenetree Post Number: 4703 Registered: 5-2001 |
C'est un grand joke..... Since I posted awhile ago I kind of went off on the friends who called back. I also called Baby Bro to tell him that mom can't hae flowers. He said not to worry, he just said he would to shut me up. I said "ya know, I'm just not feeling you right now" & hung up Took another xanax & went out to garden. Las- how you doing? | ||
| las Citizen Username: Las Post Number: 207 Registered: 10-2003 |
eh. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1532 Registered: 9-2003 |
Crappy times, actually, greenetree. Just wrote one of my memos to the doctors, to be faxed Monday. An excerpt that you may relate to: 1. I am quite cynical regarding the degree to which you talk to each other regarding the types and dosing of medicine each of you prescribes – and most certainly the degree to which you monitor. I now find myself searching medline.com and similar against everything you prescribe, and I am alert to side effects, alone and in combination. 2. I love my husband very much, but I cannot stay home from work 3 times a week to make appointments to see each of you when you don’t even seem to consult routinely each other’s information. You need to talk to each other. I am sick to death of doing most of the managing here. Read the files that are sent you, the blood work, the X-Rays. I am sick of trying to reconcile each of your advice, and remind you of things. Yes, I know about insurance and the state of managed care, but every one of you makes considerably more money than I do and I have nearly as much education as you do. I am not here to feel sorry for the lot of doctors and nurses; I am here to work to pay for the insurance – and to see that my husband gets appropriate, coordinated care – mindful of side effects and related. 3. You may not believe it, but my husband is trying to get better. He is trying to quit smoking, and he is trying to follow the regimen you outline. I do not know what you think, or the extent to which you have written him off due to his smoking and apparent HNPCC. You need to provide clear, written instructions to him or any patient with a complex scenario. What on earth makes you think that anyone can keep track of this orally? And, do you put it in a file and tell each other? | ||
| greenetree Supporter Username: Greenetree Post Number: 4711 Registered: 5-2001 |
This is just not a good day. Mom went from feeling stronger in the morning to having a high fever that won't break. She is very weak and cannot get out of bed without help. Her case manager asked me if I'd looked into hospice. I refuse to go there until her oncologist says it's appropriate. We are one week from the last chemo & I don't know if we'll make it. Normal Bro is on his way to Ohio; she is in no danger of getting out of the hospital anytime soon, so I continue on. I will go on my business trip tomorrow, with plenty of xanax. It is my plan to take the max dosage round the clock, timing it so that I will not be zonked during my presentation on Wed. morning. What else can I do? Unless told the end is near, I can do nothing. Not a good thing for a control freak. I'm saving the unpaid leave for when she really needs my help. I hope I'm not making a mistake. The nurse told me that they have been bombarded by calls. No one will 'fess up, but I have spent the evening calling everyone & telling them that they cannot call the nurse station anymore, that I will call them. I heard earlier that mom had refused meds again. When I talked to her, she did not remember refusing. So, I made her promise she would take them & called the nurse back to tell her to try again. There is now an order to call me, no matter what time, if she refuses her meds. GMF went into "all about me" again; she is the main culprit behind the nurse calls, so I was forced to call her to tell her to lay off. She kept asking me if I felt close to her and would take care of her. I told her I didn't have the emotional energy to say anything nice to anyone right now. She said "Of course. Do you have any funny stories to tell me"? A friend of mom's pointed out that someone from GMF's generation has no idea what "emotional energy" is. As ironic as this sounds, I have been thinking about having a cigarette all day. Nothing to do with being vicariously close to mom; just something I want desperately when I am under major, major stress. I will not have one. It just sounds good; sitting on the deck, blowing smoke rings and then shooting a narrow stream of smoke thru a set before they all drift apart. I used to be pretty good at that. Ob-la-dee, ob-la-da..... | ||
| bets Supporter Username: Bets Post Number: 1902 Registered: 6-2001 |
Ahhh, greenie. I would give you one in great protest, but I know you ultimately wouldn't smoke it. Maybe we can hook up GMF with AMILMF and see how they get on? Could be the answer to many prayers. I'm thinking of you; vent anytime, anywhere. bets | ||
| CLK Supporter Username: Clkelley Post Number: 1187 Registered: 6-2002 |
Greenetree, I wish I could formulate the magic incantation that would make it easier, somehow. I know I can't, but I do hope that "hang in there" and "we're all pulling for you" is of some help. | ||
| redY67 Citizen Username: Redy67 Post Number: 2422 Registered: 2-2003 |
greentree I am sending good thoughts your way and a prayer for you mom... | ||
| marian Citizen Username: Marian Post Number: 697 Registered: 9-2001 |
Greentree, you are a fantastic daughter and person. I am so sorry this is happening to you and your family. I have been following your blog since the beginning and honestly wish I knew what to say to make it better for you... Thinking of you and sending good karma your way. Keep us posted on how things are going when you have a chance. | ||
| SoOrLady Citizen Username: Soorlady Post Number: 2302 Registered: 9-2003 |
Greenie - GMF really does exist in a different plane - ever read Slaughterhouse Five? Think Tralfamador - she knows she's the center of the universe and knows how it all plays out so she's the only one who matters. Hope the business trip went well and you were able to keep your focus through your presentation.. sending good thoughts & prayers to you and mom.. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1536 Registered: 9-2003 |
More cancer in my husband. Just found out. Seeing oncologist tomorrow to figure out next moves. | ||
| redY67 Citizen Username: Redy67 Post Number: 2480 Registered: 2-2003 |
cynicalgirl I am so sorry! I'll say a prayer. | ||
| mjc Citizen Username: Mjc Post Number: 721 Registered: 10-2004 |
To greenie and c-girl:  and huge mental hugs to you both. Oh c-girl, oh ****! Hope it turns out to be less than he thinks. If I haven't said before (or recently), please contact me if I can do anything IRW. I am PLing contact info. You both are incredibly strong and seem to have good support, but here's more if you can use it (been there, done that, might be able to help in some way). | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1537 Registered: 9-2003 |
A little calmer now, more roller coaster in the future no doubt. Feeding him up as best he can. Whatever the course, physical strength will be needed. My stubbornness is not enough. You all are very, very nice. I don't know enough yet to know what I need. I will say when I know. Part of me thinks it could be fun to have greenetre's mom and my husband in a single suite. Sort of a reality show thing... See, I can laugh here and there... | ||
| las Citizen Username: Las Post Number: 213 Registered: 10-2003 |
So this morning Cynicalgirl comes up to me at the train station and I start WAILING my eyes out because I accidentially bcc'd my former husband on an email (I meant to bcc myself (same last name prompt)), and I'm going on and on about how horrible my life is and I'm so upset and I never sleep and I'm so lost and I'm so lonely so can't I please come over to do your laundry, and Cynicalgirl looks at me, stands up and says, 'I'm going over there for a smoke.' Hang in there, kitten. | ||
| bets Supporter Username: Bets Post Number: 1923 Registered: 6-2001 |
CynG, I can't wait to meet you. You and GT are my heroes and examples. Stoicism in action with grace, humor, and such strength that it awes me. mjc, the best thing you could do (for all of us on this blog) is come to a F2F and meet us. I know many IRL (I think they'll vouch for me), and the human connection is the most important thing. And it's impossible (unpossible?) in the online community. Dave has said to me that we have to have another F2F party soon. Watch for the announcement, come out and get (or give) a hug and an ear. I would love to meet you (all!). bets | ||
| Wendyn Supporter Username: Wendyn Post Number: 1857 Registered: 9-2002 |
All I can think of to say (after getting other bad cancer news today) is cancer f*(#%&#$*ing sucks. Hang in there guys. |
