| Author | Message | ||
     Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1238 Registered: 9-2003  |
DAy the first of chemo went OK -- but then, they warn us that it's not the first time that usually gets you. But, I'll take that good news. He's getting an endoscopy Thur on general principles to see what this slow-moving stomach issue is about. I've got my crank on as I'll have to take more time from work, and face down the powers that be. I manage people, and I understand the prob of people being in an unreliable place. But sometimes, sh*t happens. ARGH! And now, the dog to the vet for whatever the heck is up with her toenail/foot. It's always something (hence my online identity)... | ||
| greenetree Supporter Username: Greenetree Post Number: 4068 Registered: 5-2001  |
There are no cancer cells in the pericardial fluid! (This is a good thing). But, my youngest brother has no brain cells. This is not a good thing. I went had dinner with friends tonight and he calls me to say he can't get ahold of mom, she's not answering the phone. As I start to panic (she's hooked up to all kinds of machines and tubes & can't get out of bed except to sit in the chair for awhile -so she can't go anywhere) I ask "didn't the phone ring at the nurses' station"? Huh? She isn't at home? I called her house. He is just not bright. Poor mom - she has a chest tube pumping out fluid. She has a catheter because she has shy bladder & no privacy. She hasn't eaten anything except jello and popsicles in 5 days and they pumped her full of gas for the procedure which.... how do I say this? Has given her GI issues. You haven't lived until your educated, lady-like, impeccably mannered mother says "I need to fart really badly and I can't lift my cheek". It turned into a whole floor event. Every few minutes, a different staff member would poke their head in the door and ask her if she'd managed to fart yet. I did tell baby brother that he should give her a call, since this is his area of specialty & she should be sharing the moment with him. I also told mom (after taking the bedpan out from under her yesterday before they cathed her) that she needs to remember that I've already done my stint when she needs someone to change her adult diapers 20 years from now. Her wig came in. I picked it up to take to her, figuring that it would cheer her up. It's this big, fluffy, Jersey Girl meets Southern Belle thing. Quite frightening, actually. She needs to get it fitted and her hair dresser will cut it into her style. But, I had fun putting it on and walking into her room. Unfortunately, I found out that I just wouldn't look good with big, fluffy, shoulder length hair.  | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1239 Registered: 9-2003 |
Amazing, isn't it, what you find yourself doing that you never thought you'd be able to do. Been to the bedpan place, and the Depends place, with my parents. Learned to clean deep leg wounds (dad had circulatory surgery). Nurses and docs always seem to assume the wimmin have a gene for nursing and can deal with blood and fluids -- and have no other job in life. Learned how to deal with stomas and ostomy gear with my husband. I'm quite adept at shopping for same, and the various accoutrements. Farting has become quite a joke in my house as one doesn't do it in the usual way if you're an "ostomate" (preferred medical term for persons bearing bags). The wig sounds GREAT! I take it it doesn't resemble her ordinary coiffure? I wonder if they have wig/beard combos should my husband need one. I have never, in real life, seen his chin -- nor has he for decades. My husband had his first bout of nausea/diarrhea yesterday but Immodium and Compazine to the rescue (and they seemed to work, yay!) Meanwhile, I shop for tasty, easily digestible food. Avocodos work real well, and he likes them. We are Jack Sprat and his wife; he at a weight of 154 which he hasn't seen since Viet Nam; me, er, considerably more. OK, I'm tall and bigboned, and he's shorter. My dear friend, who's a very issue-oriented Catholic, send me a mass e-mail related to the Schiavo situation. This, seemingly in response to a venting e-mail I sent just to her. I nearly took her head off in e-mail. She's on this roll, and infused by her religion and politics said that she knew it might make me mad, but "even if it caused me to talk about it with just one person..." Jeezus. I so hate politics, especially right now. I don't give a fig for anything but my present situation, which is marvelously focussing. Every decade or so she gets an issue in her teeth and you can barely talk to her without reference to it. She's had some tough things in her life, so it's not that she's coming from a bubble. She's such a freakin' joiner. Just reminds me of the armies of darkness on all sides in some threads here in MOL. Seems like so much energy doing so little that's concrete for anybody. Would be as productive to argue whether John or Paul is the most creative Beatle. I value concrete. Big ideas give me gas. OOPS! | ||
| Duncan Supporter Username: Duncanrogers Post Number: 4035 Registered: 12-2001  |
Greenie..I told my mom the exact same thing back when she had an aneurysm(sp?) pop in her brain. She was four hours away from any hospital that could handle the problem and when my brother called me at 4AM (somehow good news never comes during a 4AM phone call) she had about a 5% chance of surviving the day. My being the most flexible person in terms of work (unlike my other sibs) by default I was the one to take up the torch, with some help from my sister, who at the time was deathly afraid of hospitals. My father was already weakening from the as yet undiagnosed empheseyma and I remember telling her when she came out of the coma and was in rehab in Burlington Vt...Ok mom... I have done my time with you. You pull a stunt like this again and someone else deals. I also remember, not so fondly, taking care of my father the last weekend of his life so my mom could travel to NYC for a much needed break. It included all the stuff you mention Greenie but without the 24 hour support of a hospital staff. Once the hospice nurse left for the day it was just me and my brand new bride (we had only been married 5 months when my father died). That was all my beliefs in the fact that I had married the right woman were confirmed. She helped and was supportive and loving in every possible way. Plus, when she came up to our house in Vermont the first time when we were just barely dating and got up at 4am to go fishing with me, our neighbor's came over that night and told my parents that that girl is going to marry your son. No woman on this earth would get up at that hour to go fishing unless she has her mind made up. Well, Mrs. Carpenter was right and her husband presided over our wedding a year later. Good luck greenie and cynicalgirl. Thinking of you both. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1241 Registered: 9-2003 |
Good for you, Duncan, on the caretaking. I meant no ill by my cracks about women doing a bunch of the nursing-ish stuff. Many men do, too. For me, it was more about medical staff attitudes... And sounds like you sure did find the right woman! | ||
| Bob K Supporter Username: Bobk Post Number: 8037 Registered: 5-2001 |
Greenie and Cynical, I have been trying to come up with a good way to express we Ks support for what you are going through. Unfortunately, I really don't know what to say without getting smaltzy (sp?), a tendancy I admit I have. The best I can do is hang tough, keep a sense of humor and don't let the medicos get on your nerves. On the last point I have found a custard pie in the face works very well.  | ||
| Meandtheboys Citizen Username: Meandtheboys Post Number: 532 Registered: 12-2004  |
I feel the same as Bob K and some others who don't quite know what to say. Be strong and remember we're all keeping you in our thoughts. Be angry (or cynical), happy, sad, annoyed, frustrated--whatever works. It's the best I've got. | ||
| greenetree Supporter Username: Greenetree Post Number: 4070 Registered: 5-2001 |
And all thoughts are great. The one thing about Ohio is that it is very Christian-centric. My mom is on about a bazillion prayer group lists (a good thing for a nice Jewish girl). All good thoughts are welcome. Especially when they come with a snide remark! I'm on my way to spring mom; she's making bail today. Apparently, she took so many laxatives that she has different issues now. I told her I wasn't sure I wanted to drive her in the car & we we got home, I'd be sitting her on the toilet for the day. If I wanted to clean up poop, I'd have kids. Or a dog. Speaking of the dog - I'll have to tell you about the maniac. He's been the biggest chore of the whole week. Nothing like a 65 pound puppy who has an IQ of 180, is scared because he knows his mom is sick & has had his routine disrupted. But, I'm on my way to get poop-girl.  | ||
| Pippi Supporter Username: Pippi Post Number: 747 Registered: 8-2003  |
greenetree - I was walking up broadway toward Penn station last night & I passed by several wig shops.I thought of you and wondered about the wig. There are just so many choices. Jersey girl meets Southern belle sounds interesting, to say the least! sorry your brother has no brains cells. I think he can get a transplant though, no? | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1242 Registered: 9-2003 |
greenetree, as you don't have kids, I'll venture to offer this advice to you and your mom: disposable wipes and a diaper genie, if she finds herself needing anything in the depends vein. The foregoing work well for kid needs, and equally for adults if they find themselves in an accidental place. I was picturing your mom looking like Crabby Road, but maybe not given the wig and maybe she's not that old. I lived in Ohio some, and out there, Catholics are often exotic... | ||
| SoOrLady Citizen Username: Soorlady Post Number: 1929 Registered: 9-2003 |
Note to Bob: thanks for expressing what many of us feel. Cynical - it IS odd how some people are seen as caregivers and others not so much. A few years ago, my mother-in-law was in the emergency room.. since 3 of her sons, 1 daughter-in-law and assorted adult grandchildren were already in the waiting room, I figured I could finish up the project I was working on at the office, while my husband drove the hour in from his. We walked in and they all said "Oh good, you're here, we can leave now." And they did. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1246 Registered: 9-2003 |
Yep, sounds familiar alrighty. And even within families, sometimes one particular person is the "cheese." With mine, it was me as the elder daughter of 2. Very reinforced by relatives. Eventually I rebelled...and, VOILA! here I am. I'm feeling OK about it today. Husband's gastroboy seems to have embraced me as part of the team. I forced him to explain a bunch of endoscopy pictures, related plumbing, the happy path from polyp to adenoma to Adenoma Gone Wrong. Stand and deliver: What is Barrett's Esophagus, sir? Explain yourself! Quick: How are is his parastalsis (sp). My husband knows some plumbing so I force analogies outta the gastrokid so he understands and so do I. See, I'm good at the smarty pants pushy part of caregiving, but not so hot at the wet washclothes on the forehead and wipe up the bodily fluids side. I am no serene madonna figga...More Roz than Sandy, if you know what I mean. | ||
| greenetree Supporter Username: Greenetree Post Number: 4073 Registered: 5-2001 |
Look at me, I'm Sandra Dee, brimming with virginity! Is that what you mean? TS just showed up. Hurray! We're going out for dinner. I'm just so friggin' tired. I thought it would be a quiet day, not having to go to the hospital at all. But, Mom & I spent the day having some deep conversations. I laid it on the line for her about the decisions she has to make - not about what treatments, etc., but how she wants to live her life. We talked about setting reasonable goals and not setting herself up for failure. And none of it was cancer-related. Very interesting. She kept crying thru the whole thing, saying that if any of the boys (my brothers) saw her cry, they'd freak. I just waited her out, handed her kleenex & kept going. She cried at the drop of a hat, all day long. It got to be funny. I've been calling her "Niagara". When TS told her she got here in 6.5 hours, mom cried because TS drove too fast and it was dangerous. It's the first time she's cried since her diagnosis. Thank god she's finally letting it out. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1247 Registered: 9-2003 |
'xactly so. I tell you what, greenetree, what you are doing you will never regret. It may wear you out at times but, you will never regret, not in your deepest most private little voice in your head times. I'm not a very religous, or "give back," or service to others oriented, but I feel pretty good about what I did for my father, and my mother. Had some really great intimacy (yeck word, like so many, but don't know what other to use)soul to soul stuff through it all. Your story about "Niagara" prompts me to say this. Now, I'll try to relate a sort of funny that somehow I imagine you can relate to. In his last months or so, while still in his house, my dad was pretty weak. He'd had the lower part of one leg amputated. He alternated use of crutches, a prostheses he never got to fit quite right, and a wheel chair. He had emphysema. He had colitis. Prostate probs. He was a frequent flyer with the hospital ER, and any number of Friday nights (always seemed like Friday) I'd get a call from him that warranted an ER visit. Pretty wearying. Friday. Home from work. Ready to play with my baby, relax with my husband. But no, hand baby to husband make Indy 500 race the 10 miles to take dad to mandatory 4 hr ER visit. I got tired of folding up and loading his wheel chair into the back of my Civic, especially as they'd put him in one as soon as we got there. I have an image in my head of a particularly rainy Friday night (kind of like this past Monday), midnight, bringing Dad home from one such trip. Me bear-hugging my dad through the rain, up the driveway, him hopping on his one foot, and telling him he's just such a lousy dancer... Maybe you had to be there! | ||
| greenetree Supporter Username: Greenetree Post Number: 4074 Registered: 5-2001 |
 I can just see it. And it sounds exactly like something my mom & I would do together. When she was whining her head off at one point yesterday, I looked at her & said "well, I guess you should've stopped smoking earlier, huh"? That made her laugh... | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1249 Registered: 9-2003 |
I want a white, oval car sticker -- you know, one of those international jobbies that tells the world proudly you've been to Ireland or Denmark. I want it to say "HNPCC," for Hereditary Non-Polypsosis Colorectal Cancer. That is the vile syndrome that my husband and his brother (deceased), mother, aunt, uncle (all deceased) are victims of. 'Course it's better than "FAP," aka Familial Adenomous Polypsosis where you produce like hundreds/thousands of polyps in your whole gastro tract. In another thread, folks were talking about ethnic identity, and hyphenated Americans. My husband is an HNPCC-American. It is neither Red nor Blue, and it doesn't care what songs you sing. It has no wrist bands, T-shirts or walk-a-thons. Some of these health thangs I've dealt with are partly why I find myself so apolitical. It is hard for me to join things that divide, to me along philosophical grounds, when many things in town politics and national are so concrete and fixable would we all but just-help-the-next-person-we-meet. Just shut the heck up, ditch the slogans, and help one person. Seems like by that buddy system, much could happen. Yeah, yeah big stinkin' thought fer the day... | ||
| Duncan Supporter Username: Duncanrogers Post Number: 4047 Registered: 12-2001 |
You two really impress me. | ||
| Tom Reingold Supporter Username: Noglider Post Number: 6088 Registered: 1-2003  |
Yeah, me too. So much so that you leave me with little else to say. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1252 Registered: 9-2003 |
So are you gonna ask us to the prom, or what? Couldn't resist! Thanks for the nice thoughts... | ||
| greenetree Supporter Username: Greenetree Post Number: 4075 Registered: 5-2001 |
Cyn - we have to coordinat eour outfits. I don't want to wear the same thing as you! Actually, I was feeling amazingly powerful. Imagine, leaving Dunc and Tom speechless! What a feat! Just took mom on her first post-surgical outing. My 5 y/o niece (the one whose b-day we are celebrating) wanted her first banana split. My dad & his wife were going to reserve a table at a local restaurant to take her, but I overruled them. I said, no. Let mom do it. They were very gracious and backed down. So, we give mom lots of time this morning, made her feed her own animals, take car of Maniac Dog (I want to see how she handles him before we go on Sunday), made her breakfast (oatmeal with butter, brown sugar and heavy cream - yuck - but she likes it & she needs the calories). She goes to take a shower, etc. Makes some phone calls, generally farts around. We are to meet my brother and his family at 12:15p. At 12:10 (we're already late, as it takes 10 minutes to get there), she realizes that her computer is frozen and needs to be rebooted. She starts mucking around with that. I got mad and said "Remember the flexibility we talked about this morning? We need to go, Greeneniece is waiting to share her first banana split with her grammy". "But you don't understand", wails Greenemom "I need normalcy to feel OK about everything". "OK", says Greenetree "It is your choice: your computer or your granddaughter's first banana split". "You have to be nice to me. I have cancer". "Get in the car, Cancer Girl". "••••. Can't I get any sympathy"? And off we go. When the banana split comes, Greeneniece offers grammy the second taste (she got the first). No, baby, Grammy can't share spoons. Greeneniece says OK, and hands Grammy her own spoon. After Grammy takes a bite, Greeneniece puts it on the side of the dish near mom and says "Here's your spoon for when you want more". Grammy bursts into tears. Her loving children and children-in-law burst into laughter. Not laughing at, mind you, but with. Crying isn't her style. But I now have the whole family calling her "Niagara". The kids all tried her wig on last night. We had a good time with it. When my nephew (6 & 1/2) started getting a little rambunctious with it, I told him he had to treat it gently, like a kitten. So his 3 y/o sister petted it. |
