SDianneB Posted November 19, 2004 Share Posted November 19, 2004 More from Mr. Murphy: They call me back about the unwanted copies of records, and of course, that was all my fault. Seems as though when I dared to ask this morning how much longer I'd have to wait, it made them rush, so they failed to notice I'd just requested records from May 31, 2004 to date. I told the lady that I'd been there yesterday to request the copies, and felt like 24 hours was plenty of time to have them done. She says they normally do them at the time the patient requests them. So why then, when I specifically asked if it would be better for THEM if I came back the next day, they said it would be better???? Then, she tells me they "can't be held responsible" for any duplicate copies that may be in there. I ask her if she went out to eat and they brought her pie that she didn't order, would she pay for it? No. Well then, neither will I. And give me a break -- for what they are charging for these copies, they danged sure better be "responsible" for their own work. Good grief. Di Quote Link to comment Share on other sites More sharing options...
schmaydee Posted November 19, 2004 Author Share Posted November 19, 2004 what do you expect?....they're just a bunch of idiots or you wouldnt be doing this in the 1st place....think about it..... like i said before...have "who ever" needs all that stuff get what they need from 'em...... let "them" chase that rabbit..... ....s Quote Link to comment Share on other sites More sharing options...
SDianneB Posted November 19, 2004 Share Posted November 19, 2004 I just wish it was that easy. I just talked to a young woman who was concerned about me, and I warned her and warned her and warned her again to not let her docs forget to check her for lung cancer now and then. She had a strange look on her face, so I explained to her how so many young women come down with this "out of the blue," and often found when it's already advanced, because no one ever thought to check for lung cancer, because they never smoked, and on and on. One more person knows now, and she'll tell someone, and maybe they will tell someone else, and maybe one day, when enough women are mad as heck about this, someone will finally start paying closer attention. Di Quote Link to comment Share on other sites More sharing options...
SDianneB Posted November 22, 2004 Share Posted November 22, 2004 One more footnote to this saga -- After 3 trips, I finally got almost all the hospital records I need. I'm still missing the complete ER record from Oct. 20th, but got the scan report which is most important, so will not go back a 4th time just for that. I got the bill down to $90 from $150 though -- they had copied a 2003 admission (unrelated) that I didn't ask for, and I found 20 or so pages that belonged to another patient, plus about 10 blank pages. I sat down over the weekend and read the scan reports in order. For some reason, I had it in my head that there were patches of cancer in my left chest, but there aren't -- never were. Don't know where I got that idea, but the scan reports are better than I thought. This last one shows complete resolution -- or at least the report says so, but mentions the "pneumonia" in my right lower lobe that the radiologist compared to the first CT scan I had back in June. Looks like that's what they are seeing on the CT scans that are holding things up, and I guess they think another PET scan will clarify what's going on. (I'd like to think that too -- just hope the Rad. Onc. was wrong when he said a PET scan this soon after radiation will be "useless.") I got through my anger over the weekend, thanks to you guys and your support! I even apologized to the medical records clerk when I went back this morning -- for being snippy with her last week. None of that was her fault, but she was the one I could see, so she got my first blast! So, PET scan tomorrow, and I hope I can easily get the scans on CD while I'm there, then records from 2 doctors, and I'm done. Whew. Di Quote Link to comment Share on other sites More sharing options...
SDianneB Posted November 22, 2004 Share Posted November 22, 2004 And now more ... Last CT scan - chest/abdomen/pelvis with contrast - on Oct. 20th. I read the report after all the hassle trying to get copies. There is absolutely NO mention of lungs or cancer or anything in my chest in that report. Nothing. Nada. Zilch. It mentions that my once enlarged adrenal glands are back to normal, and hemangioma in my liver are decreased in size. Signs of early arthritis in one leg. But not a thing about the lungs. Go figure. And this is what they are being so equivocal about? Guess the PET scan tomorrow will tell the story, if it isn't "useless." Di Quote Link to comment Share on other sites More sharing options...
Elaine Posted November 22, 2004 Share Posted November 22, 2004 I dont want to rain on your parade, but since I have had to become the witch of the year here at my clinic today, I guess I am going to be direct with you too. Maybe the fact that your adrenal gland has seemed to have responded to chemo, maybe there is a concern that there was at one time cancer there. Now maybe it was enlarged or inflamed for another reason--that is certainly a possibility. I guess if I were you, I would just ask about the adrenal and liver--why have there been changes in the liver and adrenal now that chemo is done--does that indicate that there was cancer there or not and since they can't be sure of that, then what are the odds??? I just got done talking to the medical director of the clinic I go to about my Dr.--so I have a question for you--is it normal for medical directors not to be Drs??? I am wondering if she really IS the medical director or just some PR person they gave me to. elaine Quote Link to comment Share on other sites More sharing options...
SDianneB Posted November 22, 2004 Share Posted November 22, 2004 The adrenal gland story is this -- they were enlarged when I was hospitalized on May 31. This showed on the first scan I had - a CT scan of my chest. Then I had a PET scan, and it showed NO uptake in either the adrenal glands, liver, etc. The "spots" on my liver are hemangiomas,"and I've probably had them all my life. The pulmonologist says that where I had uptake on the first PET scan was very prominent where I had tumor, so he believes that something would have shown up -- even a little bit -- around my adrenal glands had there been cancer there, and it didn't. Not even a hit of activity there. I never had any symptoms, and nothing has changed there in all the scans I've had since, until this last one showing them to be normal. Both my PCP and Pulmonologist say they treat a lot of patients with this symptom with no cancer, and the heavy duty antibiotics I was taking in the hospital and when I got home probably did the trick. I don't know about Medical Directors. There are a lot of physician practices that are managed by other companies, and they probably hire lay people as "Medical Directors." In hospitals, they have to have physicians as department chairs, but not necessarily as directors, but I don't think the same thing applies to physician practices. (Example -- a hospital would have to have a physician Radiologist to head the Radiology Dept., but could hire a credentialed Radiology Technologist as the department director.) Di Quote Link to comment Share on other sites More sharing options...
Elaine Posted November 22, 2004 Share Posted November 22, 2004 Di Thanks, she admitted she wasn't a Dr and she was adept at *ss covering, so I assumed she is some kind of PR person--like maybe she once worked for the tobacco or asbestos industries, lol. I still would ask about why the adrenals and liver are now normal. mets to either of these places would cause NO symptoms--in the case of adrenal, no symptoms unless both adrenals are hugeyly involved and liver not unless extensive involvement. Not sure how antibiotics would do anything unless there was infection. I am not saying you had mets, but I would want to know why there is nothing showing there now and what the reason for that might be. It could very well be that the "reader' failed to mention something that still is there--some benign thing that is still there. elaine Quote Link to comment Share on other sites More sharing options...
SDianneB Posted November 22, 2004 Share Posted November 22, 2004 I meant "nothing' as in no cancer -- no PET uptake. Sorry if I didn't get that all out accurately. The "resolution" is in size -- adrenals back to normal size on CT scan, hemangiomas on the liver are smaller. (The Oncologist did say that would happen with chemo/radiation -- that they tend to clean out a lot of things!) The 1st PET scan report was done the day after the 1st chest CT -- the PET scan showed NO activity there. The report I'm missing is the CT/PET combo done after 2 rounds of chemo where they pretty much ruled out the adrenal glands for good. PET scan #1 said no uptake, and the impression was "benign infection." I should have the CT/PET combo report tomorrow, so will be interesting to see what that one said. (It's the one that the Rad. Onc. said ruled out the adrenal glands, but the Onc. #1 didn't like hearing that, and said "I see the Radiation Oncologists don't agree with me." ) Di Quote Link to comment Share on other sites More sharing options...
Elaine Posted November 22, 2004 Share Posted November 22, 2004 Cool! I didn't know that chemo cleaned out lots of stuff!! So it does seem like you have the answers then, so that's good! I just don't know, like you don't know, why they are dragging the feet on PCI. I am learning that Drs are a whole different breed, and I don't understand a dang thing about them. I am wondering if some of them have had the human wrung out of them in med school or by some abherrent toilet training, lol. I know there are good ones, but when they are bad, they are very, very bad!!! WIshing you the best answers in the world! elaine Quote Link to comment Share on other sites More sharing options...
SDianneB Posted November 22, 2004 Share Posted November 22, 2004 Elaine, thanks so much. It means a lot, truly. The "answers" from this bunch I'm just not so sure about! All but one doctor, Onc. #1, figured out the adrenal gland thing, and even Onc. #1 was with them on the hemangiomas. What I think is that Onc. #1 is there primarily for research. In fact, they just recently announced their new foundation that will increase their clinical trials a whole lot by 2006, and he's right in the middle of that. Onc. #2 is also right in the middle of that, and is their breast cancer specialist. That's all fine and good, but I don't have breast cancer. Onc. #1 had ordered a CT/PET scan for the day after I finished radiation. That was when the Rad. Onc. first told me that PET scans are "useless" until 4-5 months after radiation. That's when I left Onc. #1 and asked for a referral to another one -- in the same practice. (Probably a big mistake on my part for not asking for a lung cancer specialist right then and there.) Rad. Onc. said the protocol is to come back about a month after chest radiation for a follow-up CT, then they will decide on the PCI. Onc. #2 says I'm to come back in Jan. for a CT/PET scan -- wrong on 2 counts, as I finished radiation on Sept. 9th, and waiting until Jan. would be 4 months, and just barely within the time period after radiation ended. Rad. Onc. calls Onc. #2 and tries to explain, so they call me to reschedule in Nov. -- wrong again. "About a month" after radiation stops is in October -- finally got this scheduled for the end of Oct., but had an ER trip before then, so had the CT done there. (That's the one that mentions nothing at all about lungs or cancer.) After that CT, I go back to Onc. #2 who says "we don't know." Pulmonologist says it's scarring from the chest x-ray report and from actually looking at the CT films. Now, they've scheduled the PET scan for tomorrow -- less than 3 months after the end of radiation, and within the time period the Rad. Onc. says it will be "useless." Make any sense to you? Sure doesn't to me. These Oncologists don't seem to understand the drill where PCI is concerned, and don't seem to know their own protocols. (It took me about 5 minutes to find the protocols on their web site.) This will be scan #6 I've had since June -- the 3rd PET scan. Sheesh. Di Quote Link to comment Share on other sites More sharing options...
SDianneB Posted November 23, 2004 Share Posted November 23, 2004 Puhleeeze. I go for a PET scan this morning, actually feeling good and feeling positive about the scan. The tech is great, funny, good to talk with me and let me know what's going on, how much time is left, etc. Almost makes up for my arms screaming after being over my head for 15 minutes! He is also helpful about getting a copy of this scan onto a CD for me, and will oversee copies of the others so that I can go by in the morning and get them for my consult next Tuesday. I leave there, go to the 4th floor and to the doc's office to get copies of those records, and I run into the same company again as with the hospital - aarrrggghhh!! This time though, I have to fill out the request and wait 3 working days to get the copies! Now, guess the rest -- today doesn't count, so tomorrow (Wed.) is day 1, and Friday day 2 .... uh no. They aren't working Friday, so it doesn't count. So, they will be ready next Tuesday. grrr. I explain that I have to have them Tuesday to take to the doctor, and they offer to fax them at no charge. The new doc won't take them before seeing me so that's out. Finally, a nice person came up from the back and having heard my pleas, said she is sure they can get them done by Monday, and I just need to call and make sure. Whew. (Given my experience with these people, I'm not hopeful this will work out, but if I have to as a last resort, can just get them to fax the records Tuesday if the copies aren't ready, and hope I'm in the office and checked in when the fax comes through!) Next is the oncologist's office (current) and the records are ready, but feel a bit thin, so when I get to work and go through them, all I find are the doctors notes and copies of the scan reports that I already have copies of. Nothing about the chemo or labs or anything. So, will go by tomorrow and get those. Stopped by the imaging center and picked up the CT/PET scan on CD with no problem whatsoever. Starting last Wednesday, this makes every day since then that I've had to go by and pick up or take care of something just to get these records. If anyone is reading this and doesn't already have their records, GET THEM NOW before it's really a lot of trouble! What really ticks me off about this isn't just having to pay, although I think they charge WAY too much, it's more of what I call "institutionalized disrespect." They obviously don't want the lowly patient to have copies of their own records, in spite of the law saying otherwise, so make it as difficult as possible for patients to get their hands on them. I could create a fictitious physician, give them an address, and I swear they'd send them immediately and for free, but I went about it the honest way, and have encountered nothing but their ridiculous procedures, rudeness, and total lack of respect for the patients who pay their salaries. Reading through the progression of the scan reports makes much more sense about my progress. I only wish the docs themselves could have told me as much rather than me having to read it myself, and after I've already made arrangements for a 2nd opinion with a specialist. I found out that I have an old healing rib fracture and a left ovarian cyst that no one told me about. Also confirmed that Onc. #2 is concerned mostly about my radiation wheeze, and I doubt the Rad. Onc. would ever admit that it came from the radiation. So, there ya go. Di Quote Link to comment Share on other sites More sharing options...
schmaydee Posted November 30, 2004 Author Share Posted November 30, 2004 ...kind of a follow up on this old thread...... this pci thing is kick'n my butt....!!!! i'm not sure exactly whats up.... but it (or something) has knocked me down harder than the chemo and radiation that got rid the tumor in my chest..... i cant hardly get out of bed..... and i never stayed in bed the whole time i went through the whole cancer treatment...... i'm not taking the steroids right (3/day)......i've been taking 1..... but geez... i hope its the steroids....... i never heard anybody say this stuff was ANYTHING like this...... everybody said you'd just be a little tired and stupid (for a little while)....... but it aint like that for me..... anybody else? .........s Quote Link to comment Share on other sites More sharing options...
SDianneB Posted November 30, 2004 Share Posted November 30, 2004 You're asking someone who is a little stupid all the time? Ha ... Looks like I'll get started with PCI maybe in a week or so -- I hope so. I found out yesterday the results of the PET scan from last week -- NED at last! When I was checking out, there was a sweet lady there at the desk with her husband -- in her 70s. She'd just finished PCI, and he said it got to her too -- very, very tired, just wanted to sleep all the time she said. But, she said it went away just about as fast as it came on once the PCI was over. She looked -- and said she felt -- wonderful. I was on my way to the Oncologist/specialist at Vanderbit this morning, and drove around there for 30-40 minutes and could NOT find a place to park. Seriously. It was wall to wall, bumper to bumper, and 20 minutes of that time was spent driving around the parking garage. I finally called the office and asked if they knew a trick that would help with parking, and they did not. It was 8:00 traffic, pouring down rain outside, cold, and their only suggestion was to go to the other end of that massive complex and park in the hospital parking garage then walk. Yeahright. Just what a lung cancer patient should do -- walk half a mile in the cold rain. I just told her that I'd reschedule when and if I could get someone to bring me and drop me off, because this parking thing was nuts. I may change my mind when I get started, but right now, I'm so eager to have PCI that I'm not really caring a whole lot if it puts me off my feet the entire time. I committed to aggressive treatment when I found out about this, and feel like this PCI is a MUST DO in order to maximize my survival chances. Sorry you're going through bad times with this, but thanks so much for sharing what you're going through -- even the bad stuff. Di Quote Link to comment Share on other sites More sharing options...
schmaydee Posted November 30, 2004 Author Share Posted November 30, 2004 yep, it's more of a "sleepy" thing..... than a "tired" thing..... i sure dont want to talk anybody out of pci.... i think its what needs to be done most of the time.... but the effects are DRAMATICALLY different and more severe than the idea i had imagined..... kinda blew me away a little.... its not as toxic as chemo/rad ....but it aint a flu-shot either..... prbly most of my prob is ....i went through the chemo/rad pretty well.....and finally got to where i felt "really" well......then started in on this and get to feel like crap all over again..... (whine...whine.... whine...).....i'm even starting to make myself sick...... sorry..... .... vandy is w/o equal insofar as how screw'd the traffic/parking/bookkeeping etc is..... but they have all the modern "stuff" ..... at southern hills...."they may hit me w/a chicken and then spit some rum on me" but i'm n/out in 20-30 mins and i dont have put up w/a lot of the frustration........i just dont have (really never had) the patience..... when my dad was in there (vandy).....theres a med bldg thats on top of the vandy parking garage (across from the main vandy entrance).....you can pull right off of w.end (i think its w.end? 28th, bway whatever) and if you drive "back there" (it wont look there will be any places unless you do) there's usually places....... if that makes sense ...if we're even talkin' about the same part of vandy????? ........s Quote Link to comment Share on other sites More sharing options...
SDianneB Posted November 30, 2004 Share Posted November 30, 2004 This morning, it would have taken their helicopter to have dropped me down there! If anyone else is reading this who decides to come to Vanderbilt, let me know, and I'll try to help you navigate around there. It may be that I can drop you off, or if you come with family, I'd advise you to have a spare person for a driver who can drop you off and come back to get you later. It may be that they are just busy in December which isn't unusual -- everyone wants to get stuff done before the holidays, and insurance deductibles kick in again on Jan. 1, etc. I may reschedule, but may wait until after I've had the PCI, then see the specialist after the first of the year so he can review everything. Are you done with the PCI yet? Did you already say and I missed it? Di Quote Link to comment Share on other sites More sharing options...
schmaydee Posted November 30, 2004 Author Share Posted November 30, 2004 ....they're having me do "extra"......i have to get 'em through fri.....today's my 15th they kinda wanted to give me 20...then said 15.... now its 20... i got sick (prbly a flu bug)..... and missed 3.... ......sure would be a drag..... getting brainmets.... cause you missed 1...... (or really) asking yourself later if you had 1 more ....it wouldnt have happened.... at least i can kinda shirk responsibiliy if i do all of 'em "they" want me to..... ....p.s. if you've never done any steroids youre in for a treat....... whew.. .....s Quote Link to comment Share on other sites More sharing options...
SDianneB Posted November 30, 2004 Share Posted November 30, 2004 In the late 70s, I had what they call "Bell's Palsy" -- it was an infection of a nerve that controlled the left side of my face. It came on gradually, and I thought I was having little strokes. I was relieved to find out it wasn't that, but the treatment for what I did have doesn't always give 100% results -- or it didn't back then. I had to take a multivitamin every day, had B-12 injections every day for 2 weeks, and steroids. Whew, is right! I'm pretty strong, and can stand anything for a few weeks, I reckon. I'm with you 100% -- I'd kick myself if I didn't do all I thought possible. Di Quote Link to comment Share on other sites More sharing options...
schmaydee Posted November 30, 2004 Author Share Posted November 30, 2004 ....my cousin has/had bell's ...i think it just lasted a little while (?) .....she also had and aneurism (fixed now).... what blew me away in this pci thing (and it must be "just me" because i havent heard of anybody else being effected like this).... was... i was feeling great...... the very next day after pci i got sick.... (they usually say it takes a week or 2) and i've been sicker than crap ever since..... i'm not saying its the pci..... prbly a little flu.. a little steroids... a little??? who knows.... i have no idea.... what i'm trying to say is from what i thought, it would be a lot easier on me than what it is..... i would rather someone had said ...."it can be as bad or worse as chemo (which its not...no way)..... but i would have been more (realistically) prepared.... dont get worried about it..prbly wont be bad at all....... but it "can" get pretty crappy.... .....s Quote Link to comment Share on other sites More sharing options...
SDianneB Posted November 30, 2004 Share Posted November 30, 2004 That's why I'd like to get it over and done with before the end of the year -- that and the insurance deductible that kicks in again on Jan. 1!! I have no idea how it will affect me either, and I may have the same as you. The techs over here at the Sarah Cannon Center are terrific people, and they are good to tell me things that sometimes even the docs don't. They also see patients every day for treatment, and the docs see us once a week, so the techs know if we get into trouble and need help faster than the doc will. They were the ones who gave me the great ointment/cream for my leathery skin. The doc recommended I use sauces and gravies on food during the esophagitis, which were awful, and it was the techs who said "we could have told you so!" (I told them and the dietician about my popsicle secret, and they passed it on too!) Do you have the fatigue all the time? Does it happen at a particular time of day? The reason I ask is that I had chest radiation early every morning, and could go from there on to work and not miss a beat. I was thinking of doing this the same way, but someone told me they had fatigue about an hour after the treatment. If that's the case, I may want to schedule this for the afternoon so I can have a treatment then go straight home. That might be something to ask the techs about too. I've even seen one of the masks now, and it doesn't look appealing, but I CAN do it. I so like and trust the techs there that I give them NO trouble, believe it or not! They say it, I do it! Thanks for sharing your experiences with me. Di Quote Link to comment Share on other sites More sharing options...
schmaydee Posted November 30, 2004 Author Share Posted November 30, 2004 ....i dont think it makes a diff when you do the brianfrys... i'm cant figure how it works at all...... i can miss one and feel better the next day...... then i can go for 4 days w/o and feel worse...... i'm kinda fatigued....but really more "sleepy"...... and thats pretty much all the time (for me)...... oh yeah... when they shoot it...... you can (i do) see colors and smell odors (that arent "really there")...... kinda spooky...... huh? ......i prbly shouldnt have said anything about that!!!! hehehehe..... ......s Quote Link to comment Share on other sites More sharing options...
SDianneB Posted November 30, 2004 Share Posted November 30, 2004 Haha! Bring on the colors! Winter is kinda dullsville anyway, no? You and your "brain fries," and Addie and her "head in a toaster." TOO funny!! This helps -- it really does. The fewer surprises the better! (The tech and I talked about this when I was having chest radiation -- she says it lasts just seconds, and less than the chest treatment, and those were really fast.) Di Quote Link to comment Share on other sites More sharing options...
Addie Posted November 30, 2004 Share Posted November 30, 2004 Di...I never had the visuals (ie: flashing lights) during PCI...but every day, when the radiation started....for a few seconds I swear I could smell "something" cooking! I didn't want to think too hard about what it smelled like, exactly, because I knew it was MY FREAKIN' BRAINS BEING TOASTED!! It only lasted the first 2-3 seconds...and then it went away...but do you know how when you preheat an oven...after a few minutes you can sort of smell that it's all warmed up? I know this sounds weird...maybe it's that we smell something that's spilled in the oven, reacting to the heat....but THAT was the olfactory sensation I had....sort of like an oven warming up. Weird. Oh, and I had a good case of emotional meltdown during PCI too....emotions very raw....sensitive. Then again, I can get that way around the holidays anyway....so maybe it was just me. I swear, too...that the veins on my forehead stood out after PCI was finished and once in a while I get this strange sensation up the sides of my neck...like my jugulars are overfull or something. I just keep plugging away when I'm not nodding off, though...figuring it will all go away eventually. But when they say that the fatigue with PCI is more profound than with chemo and chest rad....they aren't kidding! It's not every day, all day for me....but when it hits me...it's all I can do to keep my eyes open! I'm glad you'll be going ahead with PCI...and sorry about your Vandy apptmt. but yes, you can set that up for later and get someone to drive you and drop you off! Sorry it didn't work for today, but I don't blame you for not wanting to walk a half mile or more in the rain!~ Quote Link to comment Share on other sites More sharing options...
schmaydee Posted November 30, 2004 Author Share Posted November 30, 2004 yeah..... what addie said..... that's more like it..... i only have the color (blue) and smell thing while the "ray thing" is going.... starts and stops right w/it...... they said quite a few folks get that... it happens everytime.... exactly the same way.... ONLY 3 MORE TO GO !!!!!!!! .......s Quote Link to comment Share on other sites More sharing options...
SDianneB Posted November 30, 2004 Share Posted November 30, 2004 Ok, so if I have that all the time anyway .... KIDDING! You guys ... Di Quote Link to comment Share on other sites More sharing options...
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