| Author | Message | ||
     greenetree Supporter Username: Greenetree Post Number: 4408 Registered: 5-2001  |
Ohhhhh - I think me. Can I let you know this evening? | ||
| las Citizen Username: Las Post Number: 147 Registered: 10-2003 |
You bet. Do you have my number? | ||
| greenetree Supporter Username: Greenetree Post Number: 4409 Registered: 5-2001 |
No. But I'll check e-mail if you want to PL.... Thanks! | ||
| Pippi Supporter Username: Pippi Post Number: 942 Registered: 8-2003  |
If greenetree says no to the bushes, I'll take 'em! and in return, would gladly buy you a pretty plant you CAN take to your new home | ||
| las Citizen Username: Las Post Number: 149 Registered: 10-2003 |
That's so sweet, Pippi! I'll p/l you when I get the G'tree verdict. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1398 Registered: 9-2003  |
So, there's news on drudgereport and elsewhere about some unexpectedly wonderful effects of a new drug, for certain kinds of bone marrow related cancer. And so, like a good caregiver I go read this stuff, follow the inevitable trail to certain cancer sites. I go them rarely because, aside from straight facts about operations and such, they don't end up anywhere I need to be. Today I wrote a 2-page memo to the oncologist, cc'ed the gastro boy, the chiro man and the gp. The plea was for the onco to read the history of my husband related to back pain/arthritis, so that he would address seriously and immediately possibly solutions to that pain suggested by the chiro. This crap is HARD. If it were plumbers, or driveway pavers or electricians, I could rant and rave, threaten petit court or to take my business elsewhere. And, yeah, I can/could. But, there's always this tiny fear of hollering at the lead doc too much. Kind of an atavistic fear, like screaming at God. What if he gets pissed? What if he takes less good care of my husband? I hate this. They hold too many cards. People ask how my kid is doing. Well, good in the basic ways but hides in her room, goes to friends a lot. We talk, but mostly she is damned mad, talks slightingly of her father's prospects. I tell her stuff that I only somewhat believe as she takes her cues from me. So, I want this damned onco, who probably drives a Mercedes, who I'm sure sees rougher stuff than this to nonetheless pause and give a thought to the history I'm presenting. Each doc is a link in a wretched game of telephone, reading only the most immediate stuff handed to them. Wholistic? Not really. So, I'm trying what's worked before, to write a work-like memo cc'ing the other doctors. The real underlying message is: "LISTEN UP! Look at this and explain to me why/not this shouldn't be dealt with first." Memos and letters, cc'ed to others in the circle jerk that is medicine today, tend to get taken more seriously than calls and visits. I'm just short of saying, had I the scientific knowlege, no, you're not starting round 2 of chemo Monday unless there's a compelling medical reason why you would start before the patient is in a better state. ARGH! The onco is a bit of a smart butt, and will likely resent my questioning of his reasoning. I'm not questioning it -- I just want him to show his work. | ||
| CLK Supporter Username: Clkelley Post Number: 1029 Registered: 6-2002  |
Hey cynicalgirl, it was nice seeing you yesterday. Keep the faith. I don't think there's anything wrong with telling the doctors your point of view ("Doing round 2 doesn't seem to make a lot of sense to me because of these reasons .... now you explain to me why it does make sense.") That's not confrontational or likely to p- them off, but gets across to them that you need more explanation of stuff. It isn't making sense to you, and you want them to deal with your concerns. Look - it's like talking to your boss. Walking on eggshells, yes. Not wanting to p- off, yes. But you have a list of concerns, you have your data, you have what's going on from your point of view - politiely and patiently, explain to me WTF. Prepared, assertive, tough, and effective. Right? You can do this .... Or so it seems to me. I really don't know how rational doctors are about patients challenging them. You'd think, though, that they've seen enough families of cancer patients that they'd begin to figure out what kind of hell you're going through ... but who knows. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1399 Registered: 9-2003 |
*sigh* Hope you're right, CLK. I realize that given my work/disposition, and training as a project manager, I'm look for next steps, dependencies and so on. I know the onco engages in some thought/decision process. I just want to know what it is. And, really, the fact that they tend to look at the most immediate cause as responsible for all symptoms is tough. I guess I'm glad I work as during the day, mostly my job's rigors suck up my mind. But, as soon as I step off the train it's Cancer Land and all that goes with it. I'm sure docs in this field have to insulate to some extent from patients' feelings or they couldn't do the job. I understand that. But it would be nice if there was some level of anticipation of those feelings, and courses of action. Looking for... 1. Patient's vital signs normal? If Yes, go to number 2. If No, go to number 3. 2. Is patient's weight stable? If Yes, go to number 4. 3. Do not proceed with chemotherapy. Treat symptoms/cause until normal. 4. Does patient still suffer chemotherapy r 1 side effects? If Yes, terminate all thoughts of r 2 until symptoms subside... And so on. I know something like this goes on. I just want to know what the protocol is. Or, they can check the whole family into La Casa de Cancer and treat my husband as much as they want (given medical supervision), treat me for anxiety, and show my kid a good time... | ||
| las Citizen Username: Las Post Number: 150 Registered: 10-2003 |
Cynicalgirl, I hope I don't sound trite by saying you have to remember to do for you. More important: make some memories with your daughter. This is the most beautiful Spring ever - she should remember it as more than that crappy Spring my dad had that g-d awful cancer. Please take some time out before you crash. Hugs. | ||
| greenetree Supporter Username: Greenetree Post Number: 4412 Registered: 5-2001 |
Cyn- Las makes a good point. Can you plant a bush or something together? Dad can hang out & supervise & you and she can dig. I know where you can get a peony plant or two pretty cheap.... I'll help you dig them up. Even if they aren't mine to offer.  Also - don't be afraid to push. I did that with mom's oncologist when I asked about the game plan. At one point, I could tell he was flustered because no one had asked those questions before. But, I got my answers. BTW - I have some time today to do some Medline research. PL me if you want me to pull any medical articles, etc. I have free access & maybe your doc will look at something from JAMA or NEJM. I've done that before where I've casually handed over articles, saying "I'm sure you've probably seen this, but I'll leave it just in case". Always appeal to the snobbery..... They will read the current literature, especially if they have it handed to them. So, I get the pleasant task today of putting an end to the house-hunting. It ain't gonna be pretty. But, the reality is that it's just not in the financial cards for us. If I have to choose between paying for medications & someone to pack her house, guess which gets the priority? Ugh. | ||
| las Citizen Username: Las Post Number: 151 Registered: 10-2003 |
Actually, Cynicalgirl, now that Greenetree mentions it: I have a holly bush that I bought five years ago, planted in the wrong spot and it hasn't died, but it hasn't grown. Why don't we dig that up for you so you could plant it as a family and watch it grow? | ||
| greenetree Supporter Username: Greenetree Post Number: 4419 Registered: 5-2001 |
Spoke with Mom's doc & we agree that she might benefit from something to calm her down a little & that Xanax is not a long term solution. We also agree that an SSRI is the drug of choice (cancer patients being among those who actually do benefit from these drugs). So, I look up her formulary benefit & of course, only fluoxetine (generic Prozac) is covered. Mom is very anxious, fluoxetine is not your first choice for people who are anxious. SSRIs are also all pre-authed and have step-therapy requirements. Which basically means that, according to Aetna, the doc has to call and get permission to give you any treatment for depression and that Aetna will require you to try the cheapest drug first, even if it isn't exactly what your doc thinks you should have. Once you fail on that, then they might cover the doc's choice. But only for awhile.  Now, again, I have the know-how to navigate the system, so I call Aetna. I need to tell the doc exactly how to write the Rx so that it will be covered. First step, have him give a diagnosis of OCD with anxiety disorder. Not depression. Because that will trigger an automatic fluoxetine Rx. Acual conversation between Greenetree and Aetna Member NoServices: Hi. I'd like to get some Rx benefit coverage for my mother. I have a signed proxy form on file. OK takes down all the info - name, ID number, DOB, etc. Can you hold a minute please? Ten minutes later (I figure that she's looking up to verify that I actually have permission to discuss things) she comes back.) OK. Sorry about that. My system locked and I had to wait for my supervisor. What can I help you with? My mother has cancer and her doctor wants to treat her for her OCD because being ill is making her worse. From her formularly list, it seems that only fluoxetine is covered and requires step therapy. But, I'm assuming that's for a depression indication. Can you tell me if zoloft is covered for OCD with anxiety? zoloft has an OCD indication and has a better side effet profile for anxiety - BTW. Um, I don't know. Let me call the pharmacy and check. 5 minutes on hold He has to write the prescription for depression. They only allow it for depression and it's preauth. But my mother is not depressed, she needs to be treated for OCD. Is zoloft covered for OCD? She's only covered for treatment of depression. Well, what do you cover for OCD? Um, I don't think we do. Um, maybe the doctor should call the pharmacy department. Thank you. You've been absolutely no help whatsoever. Click Yes, I can see it now. The doctor hanging around on hold with Aetna for 10 minutes while the pharmacy supervisor reboots the system so he can play 20 questions as to what will get covered so that we don't have to pay $200 a month for drugs or that this woman who is already taking 3,000 pills a day has to fiddle around with different ones to see what works for her. So, I will call the doc back, ask him what he wants to prescribe and call the case manager at Aetna and inform her the name of the drug she is going to pull rank on. I really, really hate these people. That's one of the things I liked about working in these programs in managed care so many years ago - I made it a point to treat people like I'd want to be treated and cut the red tape for them. I always thought it was my job to get people care, not to ration it. The plumber didn't show up yesterday to finish the bathroom. Mom wouldn't give me his phone number or even his name. So, I called one of my brothers who remembered the name of the plumber & looked it up myself. Fortunately (for him) he showed up first thing this morning. How the hell do you just not show up when you know that your customer is rearranging her cancer treatment appointment because you said you'd be there? And don't even call? There's a reason mom wouldn't give me the number. 'Cause I would definitely have choked him thru the phone. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1401 Registered: 9-2003 |
Thanks for the good words, las and greenetree. We have planted some flowers (annuals), and we went to the movies Friday. Don't feel like anything more longlasting than annuals because, hey, we might not be living here in future. This weekend she goes to a beach jam thing with Girl Scouts. No offense, las, but I grew to hate holly trees/bushes in our last house. Was always running into it mowing! OUCH!!! Ended up sawing the thing down and doing stumpaway on it. We have some fun, not enough. I'm afraid nothing will make this other than the year of Cancer (this has been going on since January, with more to come). Don't mind me; I'm worn out. GP called in some terribly effective pain patches (opiode) so let's see if that helps short run. Tomorrow I call the onco to see if he read my memo. Don't want to take Monday off to drive there and hear the obvious. I'll make the evening news. Sorry to be the bummer chick, but I get depressed a bit every night when I come home and settle into Cancer World. But then, I get on with household tasks until it's time to take a Tylenol PM and crash. greenetree, those people -- the plumber and the Aetna person -- blow. They ought to be ashamed of themselves. I hope they get really serious indigestion, gas, diarrhea and hives this evening. Or, have to care for someone with same. If the plumber is with a firm, I'd call them and given them a piece of my mind. "Listen you sh-- for brains a-hole, my mother rearranged her cancer treatment for your sorry a--...." etc. But then, I have a way with words. | ||
| greenetree Supporter Username: Greenetree Post Number: 4423 Registered: 5-2001 |
Cyn- I love your words. I just promised mom that I wouldn't call if he showed up today. But, I may use them some other time if you don't mind.  Random thought..... Some people throw red paint all over people's fur coats to protest killing animals. Do they throw green paint on the children of people who use chemicals on their lawns? | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 1403 Registered: 9-2003 |
I dunno but they need to get a real problem, and a real life. And maybe to point the nozzle into one of their orifices. My words get blue, at least online. I have a normal speaking voice and vocabulary, but written, I sashay between a sort of university level of diction (which I put in those memos I wrote) and a "Glengarry Glen Ross" old-time masculine, aggressive crudity. Obfuscation provokes me more than any traditional 4-letter word. Faux kindness and artificial politeness and bureaucratese make me postal. Pull out whatever language a situation dictates. I have levelled grown morons with my rapier, er, wit. Molly Ivens, Ann Richards, Florence King, Vladimir Nabokov, these are some of my language heros. Oh, and Mike McCurry. I do recall one time standing at the reception desk of an ER, with my father quivering and crying in his wheelchair from bad drug reaction. Intake ladies sitting casually, talking about potlucks, soap operas, etc. Occasionally, an airbrushed acrylic finger nail would tap a computer key. I let fly regarding inattentiveness, and in what millenia this patient might get some attention. A cop strolled a little nearer, just a tad concerned. I am not physically violent, not ever. But, oh! my mouth... | ||
| Pippi Supporter Username: Pippi Post Number: 949 Registered: 8-2003 |
cynicalgirl - you are my idol. Words escape me when I need them most. In my mind, I always say the right thing in the manner required by the situation. greene - I would have let loose a torrent of nasty words on the plumber...hold onto that. Sadly, you WILL need it one day! | ||
| algebra2 Supporter Username: Algebra2 Post Number: 3393 Registered: 5-2001  |
We're hanging on the porch and drinking wine this Friday night ... if anyone feels the need for a ladies night - drop on by! | ||
| las Citizen Username: Las Post Number: 154 Registered: 10-2003 |
Cynicalgirl hates holly trees! Greenetree and I were staring at that poor excuse of a shrub last night and musing how kind it would be if we dug up thing and brought it to you. ha!  | ||
| greenetree Supporter Username: Greenetree Post Number: 4425 Registered: 5-2001 |
Well, it would certainly send some kind of message. Hey! I know! We could set it on fire - multiple messages: Burn the evil shrub A comforting visit from G-d (pretend the Cynicals are Jewish) Cynicaldaughter can fantasize that the fire represents burning school buses, leaving her without transportation and nowhere to go but Six Flags. I think that Alg's porch on Friday sounds dandy. I will ask TS to provide snacks. What time? Of course, I guess I'll also ask TS......  | ||
| algebra2 Supporter Username: Algebra2 Post Number: 3394 Registered: 5-2001 |
7:30ish? Anytime really -- just let me know who's in and I'll pick up more wine and beer. |
