| Author | Message | ||
     greenetree Supporter Username: Greenetree Post Number: 4758 Registered: 5-2001  |
So I just found something else to get really pissed off about. And I wasn't even looking. I Googled chemo hair loss, figuring it's time to start thinking about post treatment. I ended up on a bunch of patient sites that were so friggin' upbeat and sweet. "No effects from my chemo or radiation" says one lung cancer survivor. " 'Expect a Miracle' bumper stickers and the Lord got me thru" says another. Puke! Bite me! Where is the site with the person that says "this really sucked, it's horrible and this is what I did to get thru". Happy and peppy is just not realistic, folks! Mom was describing the burning when she tries to eat: worse than childbirth. Haven't found anything online like that. Oh - the big downer here is that today would have been her last day of chemo. That has been postponed. As long as there is a tumor and no treatment, there is the chance that it will start growing again. But, until she can eat and is stronger, chemo is out of the question. So, we wait. I talked to her oncologist about the radiation guy wanting to meet and discuss the preventative brain radiation. We agreed that mentally and emotionally she couldn't handle it right now, and unless the tumor totally remits, she probably won't be a candidate. So, I am cancelling her scheduled follow-up appointment with Dr. Cowboy -aka- Radiation Guy, until she does her last chemo and has her final CAT scans. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1550 Registered: 9-2003  |
greenetree, when you find this site, let me know: "this really sucked, it's horrible and this is what I did to get thru." Most web sites I have found utterly stink. Some, you can tell, the person got better and no longer feels like hanging out in/posting to "CancerLand." Others, you suspect they died and, well, that answers the question. Talked to a consulting firm fellow I know, a guy who I see regularly who places freelancers where I work. His son has Leukemia, and like me, he doesn't talk about it a lot at work cuz it's hard to have all your worlds blurred. greenetree, like you and me he and his family tend to avoid the cancer-ish sites and support groups. He got all surly when the "Make a Wish" people contacted him because that is not at all where they are! Everyone wants to jump in and help them, but in a depressing way...whereas, they have every reason to think their son will live/thrive ... Yes, a big problem is all the mushy, high-level "caregivers" and "healing" sites. Sounds like you want what I want: sites or discussion boards devoted to the exact cancer your mother or my husband has, with a kind of day-by-day, blow-by-blow. Personally, I'm going to root around in the americancancersociety.org's patient boards. Much going on here, but tres busy so haven't posted. Debby: yes, Whipple is a long recovery. My husband did not have pancreatic cancer so he didn't have a pancreadectemy and attendent diabites. I'm sure this will be the harder, in terms of recovery, if your dad is older or will not understand much. Nonetheless, as they watch his recovery they can augment his medicine to address bile, nausea, etc. My husband was in the hospital 2 weeks, I think. When he came home, we insisted on a daily visit from an LPN to monitor/measure certain fluid outputs. You should do that, too. Regardless of insurance (including Medicare, etc.) this can be got. Generally, the medical establishment acts like there's some "loved one" at home and ready to learn how to be an LPN. It is better to have a proper LPN come in to monitor (and it's paid for by insurance). Note that it may not be explicitly offered, but you/your mom should ask. Don't fear the Whipple! It's a good surgery. Expect to spend a long time in surgical waiting room (like 8+ hours). Joan, I would love it if Bernie pursued this. I guess I figured that because Curt has this in his family, there was no way to pursue through VA. I can use all the hands/minds I can get. I will post more later this weekend. Right now, I have TONS to get organized and haven't had time to reflect much. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1551 Registered: 9-2003 |
greenetree and Debby: Root around in here: http://www.acscsn.org/Forum/Discussion/summary.html Get a login etc. Boards on a bunch of topics. Few Holy Rollers. Real info. | ||
| Joan Supporter Username: Joancrystal Post Number: 5880 Registered: 5-2001 |
Cynicalgirl: Will do. In case you or Curt would like to explore the military disability option on your own (greater feeling of empowerment, opportunity to ask questions, feel more connected, etc.) here is some contact information that could help speed the process along: 24 hour help line re: VA entitlements: 1-800-VFW-1899. VFW Service Officer for the State of New Jersey: Bernard J. McElwee VFW Department Service Officer 20 Washington Place Newark, NJ 07102 Phone: 973-297-3226 Fax: 973-623-1244 email: bernard.mcelwee@vba.va.gov This information comes directly from the VFW website in case you want to read further. When speaking with the service officer or the help line, stress the Agent Orange exposure. Even if Curt has a genetic predisposition to this form of cancer (or perhaps because he does), the Agent Orange exposure could easily have sharply increased the liklihood that he would develop the cancer later in life. There is no guarantee he would have developed cancer otherwise. Don't feel as if you are trying to get away with something by pursuing this. The VFW refers to military disability as an entitlement for a reason. If you or Curt do decide to contact Bernie McElwee on your own (if my Bernie contacts him on your behalf, Bernie McElwee will still end up reaching out to you) please feel free to drop my husband's name since they know each other. I will see to it that my Bernie follows up regardless of what you decide. Multiple calls on your husband's behalf certainly won't hurt. I really hope this works out. | ||
| Joan Supporter Username: Joancrystal Post Number: 5881 Registered: 5-2001 |
This from the VFW Website: Agent Orange Anyone who served in Vietnam is presumed to have been exposed to Agent Orange, a herbicide that was used extensively in Vietnam to kill unwanted plant life and to remove leaves from trees, which otherwise provided cover for the enemy. Who is eligible? All service members who served in Vietnam. What am I eligible for? -- Free medical care to Vietnam veterans with any health problems, which may have resulted from Agent Orange exposure. -- Special compensation for 10 diseases associated with Agent Orange exposure: Chloracne Hodgkin's disease Multiple myeloma Non-Hodgkin's lymphoma Porphyria cutanea tarda Respiratory cancers (lung, bronchus, larynx and trachea) Soft-tissue sarcoma Acute and subacute peripheral neuropathy Prostate cancer Diabetes mellitus In addition, monetary benefits, health care and vocational rehabilitation services are provided to Vietnam veterans' offspring with spina bifida, a congenital birth defect of the spine. To find out more about diseases associated with Agent Orange, click here. How do I file a compensation claim? FW Service Officers can help you file a compensation claim for a current disability related to Agent Orange. You may also call the VFW's Veterans' Service hotline at (202) 543-2239. What is the Agent Orange Registry Physical Examination? In 1978, the VA set up a register of Vietnam veterans who were worried that they may have been exposed to chemical herbicides. Any veteran who had active service between 1962 and 1975 and who expresses a concern relating to exposure to herbicides, may participate in the registry. Eligible veterans should contact the nearest VA medical facility for an appointment. Want to know more about Agent Orange? To find out more about Agent Orange and presumed service-connected diseases, click here. To find out more about VFW's National Veterans Service Office, | ||
| Debby Citizen Username: Debby Post Number: 1884 Registered: 5-2001 |
What I fear more than the Whipple is the aftermath. How is my Mom going to deal with all of this? One of the big reasons we moved down to Florida is because my parents have a place down there, and I was trying to anticipate the likelihood of their winding up down there full-time (it's a Jewish thing) and needing support nearby. We made this decision when my Dad's decline became evident. I found a place 12 minutes from their condo. Now I have to fly back 7/31 for my boys to start school the following week, and they are going to be dealing with this disaster up here. The irony. I think back to all of cyn's stories of ostomy bags and dietary management and bribery, and my heart is breaking for my poor mom. Cyn - thanks for the specific recommendation about the home LPN on discharge. I'll mention it to my Mom today. We're going out now to stock up for our day in the waiting room: bottled water, crossword puzzle books, travel boggle, maybe a jigsaw puzzle? Catch ya later. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1554 Registered: 9-2003 |
Debby, unless your dad already has an ostomy or is getting one as part of the Whipple, there's no reason to think he will need one due to Whipple! The thing with a Whipple is that one generally goes home with these little bulb doohickeys that drain bile and stuff. The output needs to be charted, and it helps determine how quickly the person is healing. After awhile, these drainage tubes are removed and the incision grows over. If your mother doesn't have it already, encourage her to get various forms of health aid etc. to help with your father when he comes home. Not because she can't, but because it is easier to do for someone you are not related to, and it gives a degree of confidence/respite. I'm not clear on how with it your dad is given the Alzheimers. This could strengthen the need for professional help. Also, with regard to waiting rooms, buy/borrow a portable DVD player, with headphones. Helps you pass the time. As well, my husband used his in the hospital while recuperating. Strong, strong recommendation that your mom gets help. It is not lack of love! It can feel overwhelming responsibility. Too, sometimes the "patient" takes care more easily from "stranger/professional" as it is not emotionally loaded. Most states have Visiting Nurses Assoication, and very often, some degree of their services is covered whole/partial by medicare and other -- regardless of your income. My parents used them, and it really helps. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1555 Registered: 9-2003 |
greenetree, weird thought: Your mom likes flowers? I wonder if there's anything in an idea of sending her some kind of mini-garden thing such that she watches the flowers, or grass, or herbs grow. I'm told that doing things towares a future can be helpful. Equally, those little terrarium jobbies that you put butterfly chrysalises in.. If this is all too cute, just kick me. | ||
| Debby Citizen Username: Debby Post Number: 1885 Registered: 5-2001 |
Just showed Mom your post. I think she's starting to understand why the internet can be a good thing. She agreed to the post-discharge LPN instantly. Re: his Alzheimers - it's very spotty. Some stuff is very intact, some isn't. He knows who everyone is, and is still very social, but doesn't know names, can't read, has difficulty finding words, forgets what day it is/when things are happening. He keeps asking my Mom to tell him what's going to be happening the next few days. He knows he's having surgery, he knows it's not good, he keeps losing the details. He came outthis to the kitchen this morning in his underwear (this is not Alzheimer's, by the way - he's done that all his life) and I was alarmed at how much weight he has lost. He's also very itchy today. I know this is a symptom, but I'm not letting on. Hey, greene, how does that go again? Ohhm... | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1556 Registered: 9-2003 |
Itchy can be a symptom of disease, or a medicine side effect, or related to dehydration, etc. Should tell the doc. My husband gets itchy and dry skin because of his colectemy. He has trouble absorbing enough water, so prone to dehydration. Eat more bananas (potassium), sports drinks, water. The thing to know is that everything has a reason. I'm a BIG fan of keeping a sort of medical daily diary. The American Cancer Society has worksheets for same. That way, it's easier to communicate with the doc as to exactly what the person took (compliance with medicine), weight, BP, etc. Helps a bunch. Also, lotion for arms or wherever he's itching so he doesn't get scabs. Or, that oatmeal related bath stuff helps. Tell your mom the Whipple is a big but very good operation. If you google on it, you'll learn what I know. Also, to me, the American Cancer Society's web site is the best source of info, groups and stuff. Don't bother with books; everything gets out of date so fast I think the internet (reliable sources) is better. webmd site is good, too. If your dad is in decent physical health, the whipple will knock the stuffing out of him but do the job. Just anticipate slow recovery and the need to get lots of protein (not salads, al dente vegetables or fibrous stuff). | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1557 Registered: 9-2003 |
http://pathology2.jhu.edu/pancreas/whipple.cfm Debby, some good stuff in here. | ||
| greenetree Supporter Username: Greenetree Post Number: 4760 Registered: 5-2001 |
Debby - keep in mind that it seems so overwhelming and mind-boggling right now because, in addition to the emotional impact, you are having to learn lots of new info. I won't say it necessarily gets easier (that will come & go) but it changes. It's a sharp learning curve & once you get past that, it will be a bit less overloading. BTW - I took a month's worth of recycling to the dump this morning. I'd forgotten how therapeutic it can be to toss bottles into the dumpsters. | ||
| Nonymous Reingold Supporter Username: Noglider Post Number: 8237 Registered: 1-2003  |
greenetree, I haven't looked for those "this really sucks" websites, and I'm sure they exist. There's also a middle ground, and it might lift your spirits, and it might make you even more scared. A friend of mine wrote a blog for two years while she dealt with her cancer. She was honest and factual, though she hardly mentioned any emotions whatsoever. She mostly just described the treatment and how she felt physically. She also described her day's activities, whom she visited, etc. Unfortunately, the story doesn't have a happy ending. Let me know if you want a pointer to the blog that I believe is still out there. | ||
| redY67 Citizen Username: Redy67 Post Number: 2517 Registered: 2-2003  |
Debbie my dad is going through the same thing. I saw him a few months ago and was alarmed at his weight loss. I think it is more trouble for him to eat than it is worth. He has parkinsons on top of the alzheimers, making it very difficult. Here is a website I have found very helpful for it... http://www.healthboards.com/boards/forumdisplay.php?f=13 | ||
| Debby Citizen Username: Debby Post Number: 1886 Registered: 5-2001 |
redy - can you clarify? Is he dealing with pancreatic cancer as well? Or is it the alzheimer's link you are referring to? I suddenly feel very old dealing with all of this. We're about to go to the surgeon in prep for tomorrow. I'm less concerned about tomorrow than the aftermath. More concerned about what Mom's going to be left with. cyn - how is Curt? I wasn't really clear about the recent change. greene- what's the latest? I told Mom about your plans to find "Chemo sucks" panties for your Mom and it was a great dose of comic relief. The next 48 hours are really gonna suck. Hope it's all for a good reason. | ||
| algebra2 Supporter Username: Algebra2 Post Number: 3668 Registered: 5-2001  |
Debby -- are you up here or down there? What hospital? | ||
| redY67 Citizen Username: Redy67 Post Number: 2519 Registered: 2-2003 |
Sorry, Debby, I only read the alzheimer's portion of your post. My dad has what is called Diffuse Lewy Body Disease. It is a combination of Parkinson's and Alzheimers. The link is alzheimers, but it probably will have a section on pancreatic cancer. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1564 Registered: 9-2003 |
Debby (and others): Here's the latest. Been running like crazy. Today was 2nd opinion, just because. Was good to do. Doc concurs on next steps. Lucky us, we're in somewhat unchartered territory as regards protocols. People with Curt's family syndrome used to just more or less die as recurrences wasn't spotted soon enough. Today is also our wedding anniversary: 13 years married, 14 together. Rather low-key as he's not feeling great today. Tomorrow, port a cath gets put in. The easier to administer chemo over time. Friday, PET Scan, the hottest set up in cancer tracking. Just will validate to some extent where all it is. I'm sure they think it's places other than stomach, in the surrounding area. Monday, 7/18. Most of the day at overlook for labs, doc and lo-o-ng initial session. My sister picks up our daughter for a week. Tuesday, 7/19. Another, shorter session of chemo. Wednesday, 7/20. They take off the chemo drip gear. Monday, 7/25. Doc/labs only. Assuming he handles all of this OK, this 2 week cycle repeats for at least 6 months. | ||
| mjh Supporter Username: Mjh Post Number: 151 Registered: 5-2001 |
Cynical Girl; I'd be happy to take a day off to take your husband to an appt or two. I'm a nurse practitioner and have seen plenty of sick people-----I won't flinch nor talk about god's will or any such thing. Also have had chemo/radiation/multiple surgeries for breast CA, so I know very well how badly it sucks (I'm fine for now). I'm sure your husband and I can talk about the most embarrasing places to throw up in public(King's? the hallway at work? stopped the car on Valley?)..... I know you don't know me, but I'm happy to stop by sometime and introduce myself if transport would be of help. I have a 9 year old who I must pick up from camp at 3:50 unless I get a babysitter or arrange something else. I also have vacations planned and will be out of town July 23-27th and the 2nd/3rd weeks of August. You can PL me if you want to know more or ask anything. Mary Jo | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1565 Registered: 9-2003 |
Thank you, mjh. I will PL you. This first round of crud I can take off part days, a day or two, do some work from home. Many kind folks above, yourself included, are offering to assist once I get a clearer sense of schedule and stuff. I am very, very grateful...These last 2 weeks I've had help getting my daughter to/from camp, which has also been great. Otherwise, I'd be sunk! Thank you to all, and thank you mjh. | ||
| SoOrLady Citizen Username: Soorlady Post Number: 2356 Registered: 9-2003 |
Just adding in my vent for the day. I talked to my brother-in-law today. Four endoscopic biopsys later and the results are still inconclusive. He was waiting for a call from Sloan Kettering and, hopefully, getting a slot for a needle biopsy tomorrow. Waiting sucks. It's up, it's down, it's good, it's bad... I feel like they're playing "what the hell is that?" with his life! It's been 4 weeks - and I feel like we're still at square one. He's got a good attitude though... still talking about the vacation we're supposed to be taking together in August with some of his kids & grandkids and some of mine. So.. I guess upbeat is good and I really pray he can actually do this annual trip. As always - sending prayers & good thoughts to the Cynical family; Greenetree, TS & Greenemom; and you and your family Debby | ||
| Debby Citizen Username: Debby Post Number: 1887 Registered: 5-2001 |
Today really blew. We went for the pre-surg visit (Alg - I'm here...he's at Montefiore, in the Bronx) and there has been a schedule change till Thursday. Very frustrating, and it felt like a big issue until we were further into the visit and the surgeon laid out all the risks and their percentages, and the prognosis. The good news is that the tumor has a 90% chance of being resectable. The bad news is that there is a very high rate of recurrence, and the 5 year survival rate, post resection, is less than 30%. He is going to have adjuvant chemo/radiation about 6 weeks after surgery. It was very sad indeed to watch my father take this all in, and try to bargain (emotionally speaking) with the doctor. We're driving up to camp (Dutchess County) tomorrow to see my boys. I think it's a good thing to do with our 48 hour reprieve. cyn - sounds like your starting to get some real useful support. sol-please remind me of your situation with the endoscopies. | ||
| bets Supporter Username: Bets Post Number: 2008 Registered: 6-2001  |
South Orange Lady, I apologize. I read your post, but in the hustle and bustle of life I didn't get a chance to respond. Debby, same to you. Your situation is so complicated with the Alzheimer's. Everything is UK - unknown. I wish for you the strength to see it through. Doctors do not have all the answers. They're taught to treat symptoms and track test results. All medicine is experimental, there are always percentages associated with any medical procedure or treatment. I've seen close family members worsen while hospitalized; I've been witness to a misdiagnosis that was reported inappropriately to a non-relative; I saw my Mom laying post-surgery at Columbia without any of the flowers I knew had been sent, and went off on a mission that led me to the basement maze of that hospital, where I found someone who promised to deliver them ASAP (he kept his promise - they arrived during the dinner hour). SOL and Debby, take Greenetree's advice above and call your respective insurance companies until you find your advocate. Red & Deb, Alzheimer's is in my family; my Dad's sister suffered almost 20 years before succumbing to the disease. It's the most degrading and humiliating disease ever; when I die, at least let me be aware of what's happening to me. The complete loss of faculty and awareness is, to me, the worst way to go on Earth. I am hoping for good news, but am here if it turns out otherwise. -bets | ||
| SoOrLady Citizen Username: Soorlady Post Number: 2359 Registered: 9-2003 |
Debby - although we've not seen it in black & white so to speak, that my brother-in-law has pancreatic cancer, the doctors at SK seem to think so. He has all the classic symptoms including a yellowish tinge to his skin which is itching like crazy. He was originally scheduled to undergo the Whipple procedure two weeks ago when an additional test detected a tumor surrounding and squeezing the only artery leading to his liver which, at this point, is inoperable in light of its location and size. So.. they're trying to determine what it is.. benign, mallignant, fast moving..etc...etc. They may hold off on the Whipple and try chemo & radiation to shrink the tumor. Apparently both procedures are 10s on the 1-10 scale of difficulty and will probably be done at the same time. probably... if they do them... who the hell knows at this point. It's just very frustrating to hurry up and wait. | ||
| SoOrLady Citizen Username: Soorlady Post Number: 2360 Registered: 9-2003 |
Bets - I'm just a bystander in this drama. BIL has a wife who is super nurse - a real card carrying fully employed nurse. There are also three doctors in the family - all orthopeadic surgeons (his wife's brothers and their son). So - yea, the Dr's don't have all the answers, but unfortunately BIL's family think they do. Debby I think the trip to see your boys at the camp is a good idea - my BIL spent the weekend with his grandchildren at his daughter's summer house and it was a good thing for him to do - hope your parents get to enjoy your boys. | ||
| greenetree Supporter Username: Greenetree Post Number: 4773 Registered: 5-2001 |
SOL- I feel for ya. Sometimes it's not good to have so much knowledge at hand. I had my mom dead & buried 3 months ago and I'm not even a clinician. Hey - what do I know. I just know the stats. And the infection that mom had last week usually kills the patient. So, sometimes it's good to ignore the experts. Mom is feeling much better. She sounds like her old self. So much so that I had to remind her yesterday that she is not at a resort; she is in rehab. "They aren't used to peope like me who work. I waited until 1:45p and when no one came to do anything, I started making business calls. Then the therapist had the nerve to show up". "Mom, you are in a rehab. As far as they are concerned, your job is to do the therapy and get better". "Well, they can be more considerate about giving me a schedule". "I agree. You can ask them for a schedule but you can't be pissy when they don't operate at your convenience. Do you want to get tossed out of there"? She still can't eat because of the stricture. There is a chance that she will never eat solid food again, but I don't want to think about that. She has had two endoscopies to stretch her esophagus. She's still on IV nutrition. What bothers me is that she refuses to give up the morphine when she does try to eat. It's not enough to zonk her, but, she won't be able to drive and do normal activities at home if she can't use Tylenol instead. I said "Mom, what are you going to do when you get home"? "I don't know" she said. I think she is afraid of being sprung from rehab & may be faking her physicial disabilities just a little bit. Her friends are still convinced that she shouldn't be alone. I still don't see getting her a babysitter as a long term answer. If she can't get back to a semblance of her old life (without the job stress, of course) what was the point of all the treatment? We still have the last chemo to finish. Her oncologist doesn't want to do it until she's completely over her current thing. I have to find out from him if that includes the eating thing. As long as the tumor is still there & not being treated, it can grow again. I have the painters coming to do the guest room. I think mom may be visiting for a few weeks if she can get past all of this. The best thing is that as of July 1, she is on Medicare. That's a huge relief, as the rehab facility will cover her 100% for 20 days. This place is like summer camp. Did I say that before? It has 30 nursing beds and 60 rehab beds. The physical rehab includes a car for people who have had strokes, hip surgeries, etc. to teach them how to get in & out & work the sterring wheel, etc. again. A kitchen, so that people who have had motor skill issues get therapy assignments like making themselves a sandwich, etc. There is a hair salon and small grocery store on site. It's all geared to reproducing the real world in the rehab environment. And there is a case meeting about each patient with the full team (social worker, doc, nurse, therapist) every morning. I am a huge fan of the case management team approach. I've seen it work wonders. I had a long chat with her social worker yesterday & stressed that no one has talked to mom about what to expect with the esophagitis; they just keep sending her to the next appointment. I also talked to her about mom's fears about going home alone. So, they are going to make sure she talks to someone and gets the education on her side effects and the whole eating thing. I have to confess that I think that Alzheimer's scares me more than anything. My aunt died of it & I'm not good with sick elderly people, so it freaked me waaaay out as a teen. Huh. Maybe that's what did it. Then again, watching my mom go thru this, I think that anything other than a quiet passing away in the night scares the hell out of me. You think that there have been so many advances in the world of cancer research (and I suppose there have been) and so many happy stories. My stepmom has breast cancer 7 years ago and is still clean, so I even personally know someone very well. Yet - you start living thru this crap & it's hard to see any progress or happy endings at all. But, it ain't over yet, so I must continue to think that we'll keep beating odds. Cyn - I want so much to offer to help, but I also know that I may have to bail & I know that would be worse. Funny (maybe not story): GMF has a friend who is just as twisted as herself. These two have been competing for 50+ years. I'm not sure the word "friend" even applies. Anyway, GMFF (GMF-Friend) has the same view of weight as does GMF. They probably puked together at parties in the 1950s or something. Nevertheless, skinny people can do no wrong. GMFF's husband is in the same rehab facility as mom (he just had hip surgery). So, GMFF dropped by to see mom over the weekend. She raved about how fabulous mom looks, her figure is so cute! ?????? It gets better. She came back the next day with a picture of mom taken at a party a year ago, when she was much heavier (and healthy). Showed it to mom so that she could see how great she looks with the weight off. Who does that????? If I did not know this woman (and GMF) personally, I would bet everything I own that they were made up characters. No one should be that psycho. | ||
| SoOrLady Citizen Username: Soorlady Post Number: 2362 Registered: 9-2003 |
Please get a restraining order for GMFF... unless your mom finds her visits amusing. I'm tellin' ya Greenie you've got a wealth of comedy material for stand-up night at Arts. | ||
| LilLB Citizen Username: Lillb Post Number: 774 Registered: 10-2002  |
Greentree - I'm sitting in front of my computer with my jaw dropped onto my lap right now after reading your post. How F'd up is that for someone to walk up to a cancer patient and tell them what a great figure she has now. She may as well said "DAhhling! The Chemo is doing WONders for your waistline. Keep it up; you look fabulous!" AND....AND... it's her own mother!!!!! Sorry, I'm just flabberghasted. | ||
| Debby Citizen Username: Debby Post Number: 1888 Registered: 5-2001 |
Did you see the endpage a couple of weeks ago in the NYT magazine? It was an excerpt from a book by a woman about experience with weight and eating disorders, who had a grand just like GMFF. We're headed up to camp now. I'll check in later with all my thoughts about cancer vs. alzheimers. As a preview - I'm thinking this cancer may not be such a bad thing after all, as long as the next period is tolerable. So who's bargaining now? | ||
| greenetree Supporter Username: Greenetree Post Number: 4783 Registered: 5-2001 |
Well. It turns out that Medicare is the secondary provider since mom is still employed. If she quits/retires, she loses her Aetna. I received a phone call this morning before I even finished getting dressed. Since mom can walk 125 feet and dress herself, Aetna wants her to go home. Oh - she hasn't been covered since Sunday, but the Aetna case manager didn't let the SNF case manager know until yesterday because she was off on Monday. Greenetree's rant to Aetna (in no particular order): She lives alone and has stairs. She is on an IV. It has now been a month since she has eaten. She has no one to take care of her. She dresses herself but has someone in the room because she isn't completely stable. Yes, she ambulates, but with someone walking with her. My brothers and I are all out of paid time and have been supporting her for 7 months, so no, we cannot come live with her and learn how to work her IV. She still has one more chemo to go and I spoke with her gastroenterologist yesterday. She is not due for her next procedure until next week. Her oncoloist does not want to do the last chemo until she is strong enough. The last one almost killed her. I am sorry it didn't; then you would be off the hook, huh? Aetna's helpful suggestions (in no particular order): Send her to stay with a friend. Cash in her 401k & life insurance so that she can go to a Medicaid nursing home. Come live with me. Hire a private duty RN. I will let you use your imagination on my replies. I'll wait....... No. More vicious than that. I have calls in to the medical directors, her doctors, etc. And we sure can't tell mom about this; yesterday, when the SNF case manager hinted that there might be a problem, mom got sick. Sure, it's psychosomatic, but it's real. Hey! I know! If it's such a breeze, she can go live with the Aetna nurse! | ||
| algebra2 Supporter Username: Algebra2 Post Number: 3692 Registered: 5-2001 |
I know it's a week away but ... it sounds like we need a ladies night. My house -- next Friday (the 22nd). The hubby is going to a baseball game and I know how much he loves coming home to find a bunch of liquored up women in his house. Anyone in? | ||
| greenetree Supporter Username: Greenetree Post Number: 4784 Registered: 5-2001 |
Oh No! We'll be in Ohio! And I wanted to host the next one. You all go on and have a drink without me. How much time do mommies need to find childcare for a Friday night? We'd be looking at 8/12 or 8/19. | ||
| Lucy Supporter Username: Lucy Post Number: 71 Registered: 5-2005 |
Greentree how you keep your sanity is beyond me. Stay strong you are force to be reckoned with you and your mom are always in my prayers. | ||
| Joan Supporter Username: Joancrystal Post Number: 5893 Registered: 5-2001 |
Greenetree: Will Medicare as the secondary provider pick up for services which they will cover but Aetna will not and if so, will they cover the additional hospital time your mother needs? | ||
| greenetree Supporter Username: Greenetree Post Number: 4785 Registered: 5-2001 |
Lucy- ya can't keep what ya never had.  I've spent the better part of the afternoon piecing together home care support. There is no reason for her to be in the rehab except for the IV. I'm just pissed off that Aetna thinks that this is not a good enough reason. Mom is starting to act as if she's in a resort, so I think she should go home. Maybe it will be good for her to be home. I know that she is really scared of being home alone & if we cover a couple days of 24 hour care, she'll be fine. Then, we'll cut it back. And she still doesn't know about any of this. | ||
| greenetree Supporter Username: Greenetree Post Number: 4786 Registered: 5-2001 |
BTW- curses to all of you who said "Dear Greenetree, you have so much on your plate right now. Don't worry about dieting". I've gained a crapload of weight.  Well, my work is done for the day. I've talked to 3 social workers, 2 case managers, 3 nurses, 1 customer service rep and 2 doctors. If mom can have her endoscopy this week, Aetna might pay for this week's stay. At $600 per day. Everyone agrees that it will be impossible for her to manage the IV. Her gastro will have to talk her into the peg tube in her stomach. She ain't gonna like it, but tough noogies. Speaking of weight, I have a friend in culinary school whose assignment is to go to a restaurant, order and critique their desserts. I am going to help him with his homework. Bye. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1570 Registered: 9-2003 |
I think you might be right about the usefulness of her being at home, for her head. I don't know what the IV entails, but the homecare thing can work for the IV if they have a schedule and someone who (1) does the LPN or similar thing for the meds, and (2) someone who comes in for other kinds of "personal care" as they like to term it. Is there an opportunity to, however, temporaily, create a bed situation downstairs? You could get a rental hospital bed in there. Yes, they all like to assume someone can come in and do all of this. What's gonna freak her out about the circumstance? What's her opportunity to borrow against the 401K? Or, cash some in? I've done that pretty recently and sometimes, well, you must. I'm just glad I had it at all. Another thought, just a thought: it is possible to get a very down to earth psych nurse type. Yeah, yeah, I'm not fond of that stuff. But someone other than you, who's dealt with semi-elderly in straits, to get a bead on what's going on in her head. It can work better than talking to a family member, and might give some insight into her specific worries and therefore what to do. Helped my father the inward Yankee farmer a lot, not in a gushy Oprah way but in terms of clarifying needs. Some such nurses are just as crass as you, me or your ma. Realize this may all be stuff you've covered. Maybe knowing more will galvanize her will? | ||
| Debby Citizen Username: Debby Post Number: 1889 Registered: 5-2001 |
Tomorrow's the big day. Mom and and Dad had a rip-roarin'fight over how to get to the hospital tomorrow - Dad wanted me to drive, Mom wants a cab. It was more emotional intensity than I've seen in decades. Things have settled down again, and I think it was just a necessary pressure release, but I've scored some klonopin for her for tomorrow, just in case. Going to bed now - we're leaving the house at 5:45 AM. Prayers and positive energy welcomed. | ||
| SoOrLady Citizen Username: Soorlady Post Number: 2369 Registered: 9-2003 |
Greenetree - I just ate the leftover cheesecake.. been in a feeding frenzy for a couple of weeks (and not a "brownie" induced one.. just a plain old the-only-thing-I-have-control-over-is-what-goes-into-my-mouth-so-I-might-as-well -let-that-go-too). Also have neglected to go exercise using mom's visit for an excuse.. she's back in AZ now so I have no more excuses. Debby - prayers uplifed - will be sending good thoughts your way tomorrow - let us know how it goes. | ||
| greenetree Supporter Username: Greenetree Post Number: 4791 Registered: 5-2001 |
FYI - The magic words to get your doctor to pick up the phone and call your insurance company: "They said you are withholding care". Mom is getting her endoscopy tomorrow. Now, Aetna seems pissed off that we managed to get it scheduled. I think that, just like Dorothy bringing the broomstick of the Wicked Witch of the West, they didn't expect it to happen. We'll see if Aetna follows thru on the promise to pay for this week if she gets scoped by the end of the week. Of course, they will probably still want her sent home right away. Who even knows if the scope will work? I have a feeling that mom will be home by Saturday or Sunday. On an IV. Which Aetna expects her to manage herself. ••••••••. |
