| Author | Message | ||
     Joan Supporter Username: Joancrystal Post Number: 5218 Registered: 5-2001 |
Duncan: I know you mean well but the primary problem both Greenetree and Cynicalgirl are dealing with right now is how to help themselves and their loved ones get through the heart wrenching experience of being a cancer patient. I think their point is that while brightly colored ribbons may do a great deal for making non-cancer patients aware of the need for research into ways of preventing and curing cancer, they do not do much for a cancer patient who wants to be treated more like a human being who just happens to have cancer than like a cancer patient who just happens to be a human being. | ||
| Duncan Supporter Username: Duncanrogers Post Number: 4007 Registered: 12-2001  |
No I have just not expressed myself well here. I'm done. I completely get their position and have not articulated mine well at all. Just hope everyone lives one day at a time. Its an old saw, but a worthy one. | ||
| greenetree Supporter Username: Greenetree Post Number: 4044 Registered: 5-2001  |
It's OK, guys. All are welcomed here. Duncan - my mom is probably not only not going gently, but, after today, will most likely go while choking some poor bastard doctor.  | ||
| greenetree Supporter Username: Greenetree Post Number: 4045 Registered: 5-2001 |
A little set back today. After getting my mom all pumped up for radiation (Gimme an R! Gimme an A!...), the medical oncologist calls her, can't find her, calls a cardiac doc, who calls my mom and leaves a message on her VM that he must see her now. Immediately. Well, of course, the poor woman freaks out. Seems the fluid around her heart that they decided wasn't an imminent danger or a barrier to radiation now is. So, she freaks out. Her oncologist calls me. I get pissed (why did we tell her she wasn't in danger, yadda, yadda). I get mom on the phone, pull a few insurance strings to get an emergency cardiology referral for her stupid HMO (because if she doesn't drop dead from a heart attack within the next 24 hours, they will not cover the visit) and off she goes to the cardiology guy. As she tells it, a 13 year old doctor walks in, goes over everything, reassures her that she is not going to drop dead in the next 24 hours (good thing I got the referral) and tells her that he has seen really good results with chemo along so she shouldn't worry. Whereupon she tells him that when he left the message on her VM earlier, she decided that she hated him and wasn't going to change her mind. She came to the appointment reveling in her hatred and was all prepared to call him a rectal opening in several languages, because she has decided to hate all doctors. But, now, she has decided he is a nice guy and she likes him after all. Apparently, he has a good sense of humor and took it rather well. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1229 Registered: 9-2003  |
Boy, can I relate to that tale. I wish one could have a truly primary dr who orchestrated all the crud, and translated, and held all the other docs to account. Single point of contact. Husband went thru that repeatedly in the Fall, with his "13 yr old" gastroenterologist. Even thru the surgery in Jan, I'd get a call from the surgeon saying this, and the gastro saying that. the onco this. The genetic counselor. GET ON THE SAME PAGE PEOPLE! This is MY HUSBAND we're talking about. "You have cancer." "You had cancer." "It was the duodenum." No! It was the lymph node. No! It was both. Maybe it was his freakin' ovaries you numbskull... What really sux is that it is utterly true that if the patient or a persistent, crabby "caregiver" doesn't stay on their butts nothing stays organized, and little truth arises. I now freely call doctors offices, put on my deepest voice, and say "Dr. So-so returning Dr. Blah-blah's call" just get past the crap. | ||
| greenetree Supporter Username: Greenetree Post Number: 4053 Registered: 5-2001 |
I just got an emergency phone call from my mom's friend, who took her to her first round of chemo. Did she have a heart attack? Did they discover metastisis somewhere we didn't know about? No. Seems she's chatting with the other chemo folks (the place looks like a big lounge - with a coffee bar) and has gained new information on the whole hair loss thing. The Chemo Network gives her 7-10 days before her hair starts to fall out. She needs to order a wig this very instant. Why call me with this emergency? I'm in charge of following her benefits. Fortunately, I checked it out this morning & was able to fill in the friend. If she gives me another heart attack like that, she won't need to worry about the cancer. I'm gonna kill her. I told her that several times last week while we spent our 7 bonding days together. She laughs every time. I was on the phone with her this morning, talking about our planned family get-together next week. When she heard that one of my brothers isn't going to stay on her pull-out couch, she started whining & I told her to knock it off. So, she pulls out her very best, wilting, breathless, gasping voice...."but I don't know how long I have...." I said "Knock it off, Scarlett". She laughed and said "that won't work, huh"? Nope. Not if you want to be treated like a person who just happens to have cancer.  I have to say, tho. I'm absolutely exhausted today. The emotional ups & downs of yesterday drained me & the weather isn't helping. But, I made an impact with my hissy fits, because the radiation oncologist called mom at home last night to apologize for the confusion and explain the mixed signals. I am marginally satisfied with his explanations. I am going to see how mom's conversation with the medical oncologist goes later today before I make any more orifice-rippuing phone calls. | ||
| shh Citizen Username: Shh Post Number: 2310 Registered: 5-2001 |
Wow G. My thoughts are with you, your mom and your family. I think the fact that she cares about her appearance is a good thing. Looking good will help keep her spirits up. My first cousin's first cousin had breast cancer a few years ago. She was only 27 and had to have a double mastectomy. So sad. In the hospital, a team from Estee Lauder came to give all the women makeovers. I hope that you have a pleasant family gathering this weekend. | ||
| las Citizen Username: Las Post Number: 75 Registered: 10-2003 |
Greenetree and Cynicalgirl: Being a serial lurker I have found it difficult to actually post the thoughts I have written to you both over the past few days. But alas, no matter how inane, this will be the post for which I hit the red button. I'd like to start by saying I am miserable and hate my life right now, so I have nothing nice to say to either of you. I am in the mood for a fight, I want someone to cross me to trigger my ire so I can get some relief. That said, feel free to forward the contact details for any of the pathetically cheery people you encounter, the doctors who are not yet convinced your mom and husband are the most important people in the world, or the snitty folks begroaning their lives when they have no idea how much they have. I hate everything and everyone right now (except my cats)(and except my Darlow's Enigma rose bush that blooms in full shade), so I'm happy to say a few words to them on your behalf. That said, I don't know what I can offer that you don't already have, so I say this: I will be here, right across from my screen, a few blocks away. I will always read your words and will think of you often throughout the day. I will do my best to become less of a lurker and more of a writer, so that you know I hear you. Warmly, las | ||
| greenetree Supporter Username: Greenetree Post Number: 4059 Registered: 5-2001 |
Las- I'm with ya. If you really need to unload, might I suggest a trip to Best Buy? They always manage to piss me off, but I feel obliged to go back because they have the best prices. Go to the computer department and ask a question. You will be guaranteed to get your relief. One thing I've discovered about those who've been there- you always feel them. Mom made Chemo Friends yesterday during her first treatment & I think it made her feel better to get first hand pointers on how to deal & who to curse out. She's a little scared tho: she has 4 very best friends who have been together for 30-40 years (I should be so lucky). Her saving grace is that three of them are Perpetual Feeders (you should see her fridge) and but one spends the winters in Florida (#4 is more sensible & doesn't cook). Florida is coming back next week and has already volunteered to cook, too. How much pot roast can one woman eat? Last time I was there, I threw out all the food that one friend brought over the past week while that same friend was coming up the walk with yet another casserole. I have to run to a meeting, but I'll have to post the cast of characters of mom's friends. They are pretty funny. | ||
| shh Citizen Username: Shh Post Number: 2321 Registered: 5-2001 |
Sounds kind of like the midwestern version of the YaYa Sisterhood! | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1232 Registered: 9-2003 |
las, yours if a very cool post. I use my anger to get things done, but I can always use support in my militia. Mostly, I resist the urge to flame people at work, on MOL or elsewhere who I think need to get a real problem. First of all, it's probably not fair (though I gotta admit that doesn't enter into my calculus), but mostly it would alienate people. I can't have that at work or I could become a pariah and lose my job. So, I smile and mentally whistle a happy tune. Trust me, I have tons of Jack Nicholson moments, every stinkin' day. Lately I drive around in my black Pacifica, blaring whatever thunderous music I like out the window, and shake my head/hair/arms like a Ramone. I may be 50, some parts of my family's life may stinkk, but I still rock and don't suffer the mealy-mouthed gladly (plus, it makes my husband laugh when I get like that). thank you, las. | ||
| Pippi Supporter Username: Pippi Post Number: 723 Registered: 8-2003  |
"That said, I don't know what I can offer that you don't already have, so I say this: I will be here, right across from my screen, a few blocks away. I will always read your words and will think of you often throughout the day. I will do my best to become less of a lurker and more of a writer, so that you know I hear you. " las - thank you for posting that. That is EXACTLY how I've been feeling! I have been reading this blog and can't come up with anything funny enough to post. But I am here and I am reading. And as soon as I have a good joke, I'll be back. | ||
| greenetree Supporter Username: Greenetree Post Number: 4060 Registered: 5-2001 |
So - here is the first character.... Way Too Chipper (WTC): she & hubby are like my second parents & their kids like my siblings. Everyone is still very close. WTC is very anal and controlling. She is Jewish and has therefore decided to feed my mom back to health. In massive quantities. We came home from a doc appointment a few weeks ago to find her in mom's kitchen, frying up turkey burgers. She & hubby are vacation this week and she promised to come over every day and cheer mom up when they get back. She made mom cry. And they weren't tears of gratitude. Her own hubby said "maybe she doesn't want to be visited every day". Nonsense! replied WTC. She's sick; she doesn't know what she wants. Mom loves WTC to death (or is it that WTC is going to love mom to death?) and she may end up killing poor WTC. Do they do chemo in prison? Oh - a side benefit of all this: I am now an expert in wigs. If ya need to know anything, anything at all, drop me a line. Who knew it was this complicated? I realize that my moods are very much tied to how my mom sounds. As long as she sounds like herself, I'm fine. This is just a task-oriented thing that I can take care of. This morning, she was feeling nauseated from her first day of chemo yesterday. I had sympathy nausea. But, she was very happy when I called and ordered her wig for her. The wig lady was very happy when she found out that my mom has Aetna. Apparently, they have one of the most generous wig policies in managed care. I could swear that Wig Lady had an orgasm describing the top of the line wig to me over the phone. Is it wrong to have phone sex with a 85 year-old wig lady that you've only met once in person? Pippi - (and others) don't worry about the pressure to be funny - defeats the purpose of this thread. Eventually, you will remember the time that Great-Uncle Herman got drunk, fell into the table saw and chopped off his arm. And how, when the paramedics got there, one of them noticed that the pool of blood was shaped like the state of Idaho. The you'll have something to tell!  | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1234 Registered: 9-2003 |
"I realize that my moods are very much tied to how my mom sounds. As long as she sounds like herself, I'm fine." I can so relate to this. I have this daily about my husband. It's a fiendish roller coaster. | ||
| las Citizen Username: Las Post Number: 78 Registered: 10-2003 |
Hi, G & C - Greetings from Sunny Florida (soon to be renamed Terriland). I'm visiting my sister who has a sick chihuahua and needs a respit from his hourly feedings. It was no problem getting up all night because I never sleep when I'm here. My sister is a smoker, and although she smokes outside when I'm here, her place smells like smoke and perfume and it overwhelms my senses; and she has to sleep with the TV blasting; and her other chihuahua licks my face all the time, so offering to take the night shift for a few days really isn't that much of an imposition. The baby chihuahua made diarrhea on my sweater at the airport, the other chihuahu threw up on my shoulder while I was in bed, and every time I take a step I land in a piddle puddle. Ah, puppies... The cool thing is my sister owns a knitting store, so I get to play there in between feedings for the weekend. She also happens to live on the beach; right now I see and hear the Atlantic Ocean (I'm watching the ocean and she's scrambling egg for chihuahua #1) (I should only be so lucky). My mood has calmed down a bit since I left NJ, so I don't think I will be able to hate the world on your behalf for a day or two. Not to fear: I shall get nice and crabby as soon as I return...and that's a promise. Hugs, las | ||
| brusin2 Citizen Username: Brusin2 Post Number: 23 Registered: 6-2003 |
you might find a book by Evan Handler called Time on Fire helpful and humorous at times. He is an actor and this book is his battle with leukemia and with his care givers at times! I read it when a friend of mine had leukemia and it had the correct amount of "rage on the page" to help me vent a bit. I checked B&N dot.com and it is out of print but there are a lot of used copies available through the used book tab on the site. | ||
| Dave Moderator Username: Dave Post Number: 5700 Registered: 4-1997  |
Here's a link | ||
| greenetree Supporter Username: Greenetree Post Number: 4063 Registered: 5-2001 |
Oi vay. Whay a day. It's Saturday, right? Thursday, in the middle of a conference call, my cell phone rings. I notice it's my mom, who is supposed to be in the middle of her second day of chemo, so this is not a good thing. I put my office phone on hold and pick up mom. Seems her blood pressure dropped to 60/30 (this is not a typo) and the ambulance is on it's way. She just wanted to let me know she was going to the hospital (her chemo is at a cancer center). I pick my conference call back up and say "sorry, gotta go, I'm leaving the office". I call TS, who happens to be home at 4:15p on Thursday & tell her to pack me a suitcase. I get home, we both pack, jump in the car and are back in Ohio by midnight. I just left here 3 days ago. So, long story short, yadda yadda yadda: remember the post a week ago where the docs couldn't seem to agree on whether the fluid around the heart was dangerous, etc.? Guess it was. And the procedure that they wasn't sure whether or not they should do? Guess they need to. You know, the one they hoped they wouldn't need to do once she started chemo. Yeah. So, she's in over the weekend, the procedure is Monday and here I am. Right back where I started. May I be selfish for a moment? Why yes, Greenetree, you can. I want my friggin' life back!!!! I guess I'll be here all week, since we are supposed to come back on Friday for a whole-family get together. Two weeks in a row of back and forth 3 days apart is a bad and expensive idea. I'm sure my job won't mind.  I just want to lay on my couch, in my own house and actually make social plans with my friends that I can be confident that I will be able to keep. At least TS is with me, but will be flying home Monday morning and back here on Friday afternoon (that's another $300 down the drain). OK - now that I've done my bitchin', here's the funny (you have to have a really evil sense of humor for this). My grandmother (mom's mom) is a royal pain in the •••. Since Day 1, her biggest concern has been about herself. And not in a Dr. Phil-Oprah-we-all-handle-our grief-differently kind of way. The only reason I haven't chewed her head completely off is for my mother's sake. This pretty much sums her up: when I told her that her daughter had cancer, she thought about it for a moment and said "well, I guess I'll call my lawyer and transfer my power of attorney to you". It has been exactly one month since my mother was diagnosed - today was the first time my grandmother visited her and she never asks my mom how she feels. It almost didn't happen, because she called me to say that she'd love to visit mom at the hospital, but she didn't want to bother me since I'm busy, but she just doesn't drive that far anymore (understandable - she is 88). No problem, I said. This is your daughter, I will come pick you up and take you home whenever you want. Suddenly, presented with the idea of having to make an actual appearance, she couldn't get to the hospital after all. Two hours later, she calls mom and is told that one of her close friends (who came back from Florida a week early to help out) is at the hospital. Grandma hates this friend. Now she demands that I come pick her up because she isn't going to be outdone by this woman she can't stand. Trust me - the funny part is coming - I just had to lay the ground work. So, I tell grandma that she will now have to wait because I had offered to pick her up at 2, it is now 4, and I am running errands (one of which is picking the dog up from the groomer because he hadn't had a bath in 6 weeks and was funky as all hell). I get her at 6:30 & off we go to the hospital. Mom doesn't really want her to visit and only told her it was OK because none of us really expected her to show up. Grandma annoys and stresses everyone. So - mom has been doing really well and despite chemo nausea, has not gotten sick at all. But, tonight, mom felt like living on the edge. Not only did she decline her anti-nausea pill, she ate hospital egg salad for dinner. I'm sure you know what comes (up) next. Yup. The egg salad. With grandma sitting there. Grandma stays composed as long as she can and says, perhaps I'm upsetting you, and leaves the room. I'm standing there with a cold cloth on mom's neck, while the nurse is holding the basin. I say to mom after the final retch "I think it worked; I don't think she'll visit again". Ever see a chemo patient get hysterical laughing when they are not quite finished puking? So, was that your mother in law? asked the nurse. No, we said in unison, it's her mother. The nurse fell out. And, on cue, in comes grandma, who gathers up her coat and tells me that perhaps mother is tired and I should take her home now. Sometimes, I think maybe there really is a god! | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1237 Registered: 9-2003 |
greenetree, greenetree...! Poor you. And thank God for your mother's personality. Seems like every old relationship dynamic comes out in spades at times like this. Never like a Lifetime channel movie. It's been awhile now, but I had some experiences like that with my dad, and his "aunt and uncle" who were actually just 2 years older than him. I had a protracted frosty fight with the above mentioned aunt 'n uncle when my dad was beginning to decline, and it was all over a.... ROTOTILLER! Dad was in this mood where he was giving the odd meaningful present to people he cared about. He thought up things that were really appropriate given their interests. This aging couple were avid gardeners, long retired to Florida. They were all close, and grew up together. Anyway, my dad decides -- and it seemed really cool to me -- that what would be meaningful/useful to them was a rototiller so the husband didn't have to dig so much. In FL they were able to have like 4 growing seasons or something. They were extremely proud/boring on the subject of how many vegetables they got from this garden. Anyway, he orders this high end rotortiller shipped to them. Well...it arrives and they are extremely put out. 'Course they never told my dad, who was pretty feeble though living in his house. No, they call me multiple days running to inquire "what was he thinking?" And they're all rude and ungrateful and seem offended. I offer that, well, he was thinking about their favorite thing to do the FL heat and their collective age. That he just meant to do a nice thing. They seemed to think it was somehow awful, and some kind of slight or comment. Could not get past it. So, I said "Fine. Send it back." More calls about how impossible that was, and how maybe they'd sell it locally. Honest to God it went on for days, and they were so mean about it. I wanted nothing so much as to tell them to go screw their ungrateful selves, that my Dad was declining. Every call I cried after. I never really got over it, and it permanently soured my relationship with them. They are childless, and they are my godparents, which they always took quite seriously. But, they've always lived in a little self-referential bubble of their own idea of correctness and right living. And now, despite my husbands repeated cancer, they barely get that theirs is a world of feelings outside their own. I have written them off. They do talk to my sister some, no doubt about how stupidly I've lived my life, my choices, etc. They wonder why I haven't gotten Christmas cards out, stuff like that. If I were to talk to my aunt on the phone, she'd be fully capable of saying something like "How do you stand it? Maybe it's something he ate? Aren't you sorry you divorced Michael (first husband)?" And now for, if not a funny, a nicey. I've been quite depressed since Friday as my husband was told that he's having "gastric paresis," meaning the valves are sluggish/slow. Monday he goes for chemo and to check in which his child gastro -- I'll be there, fortunately. Despite my usual can-do self, I've been wracked with thoughts of death. It has been awful. Anway, Easter approacheth, and while we don't do much, every year my husband sneaks out and buys our daughter and me a plant. Just one of those small rituals that has meaning. I'm driving around thinking "it won't happen this year. Maybe I should do it." Made me unspeakably sad to think of the loss of every little family ritual. I mean, I can't take much more. So, I'm driving around town, and route 10 doing errands feeling sadder than sad. No CD working to lift my spirits. Nothing. I came home and there on the coffee table were 2 "Easter" plants and my husband smiling from his fave chair. Yeah, thin and tired, but there. I had such a huge cry and hollered at him that he MUST get better. That I just miss how things were just too much. My God, I cried from my toes. I was so glad he bought the flowers... | ||
| greenetree Supporter Username: Greenetree Post Number: 4066 Registered: 5-2001 |
Cynical - I'm so happy you got your flowers. I totally understand how special they are. We finally found out that they are doing the surgical procedure tomorrow and there is no telling when mom will make bail. When the fluid is done draining. Hours, days, weeks, whatever. I just hope that she is home by Friday. All the kids & grandkids are coming & we are supposed to have my niece's 5th B-day party. We had originally thought we should seize the opportunity to have a family gathering while mom is in good shape. I hope it happens. My dad and stepmom sent my mom flowers in the hospital, which is really cool. After 28 years, everyone gets along, but it still makes me happy that they are there for her. My stepmom had breast cancer so she has been a good person to chat with mom. My dad is really upset, too. And, even tho he is a man of few words, he has been a rock for me. He took care of two aging sick parents and an aunt, so he knows how exhausting this is. Another nice: there is a young nursing student who works as an assistant in medical ICU (where mom is). She loves my mom & thinks she's a riot. She has a 2 & 3 year old. She told me tonight that she quit smoking yesterday after watching me & my mom. She said that my mom is a hoot & she thinks about what I must be going thru and she doesn't ever want her kids to go thru that. I hope she can do it. Maybe I should give her the same advice I gavr Brett? Sex in her car? Today's funny - grandma called to tell me that mother seems to have had too many visitors, so she won't be going to the hospital today. A few minutes later, a friend of mom's called to get the hospital number. I told her to tell mom that it worked, grandma won't be coming back and that mom would tell her a funny story (the egg salad episode from last night). So, apparently, the friend called mom and simply said "your mother won't be coming back". Mom said "she finally died"? When mom was telling TS & me the story, we were practically crying & the nurse said "you are all sick" & left the room. My brother called right then & mom told him the story. He didn't laugh. She said to him "oh, lighten up. Cancer can be funny". I had a relatively good day. But, when I went to the hospital tonight to pick up all her stuff because she can't have it in CICU, I remembered that we are going thru all the cardiac stuff so we can fight the cancer. For a little while, tho, it was only about a minor heart procedure. I'm walking out of the hospital at 8:30p, lugging a make-up bag that is the size of my cat carrier, a duffle bag with all the jammies, flowers and a cookoo clock (don't ask). I'm cheerfully saying goodnight to people & they are all looking at me sadly and turning away. It dawned on me that they thought I was removing the belongings of a departed loved one. Either that or they were freaked out by the cookoo cock and didn't want to make eye contact. Cynical - good luck tomorrow. And remember that no one can see you when you are crying/screaming/laughing in your car. |
