You'd think, would you not, that I was not going to have much trouble with the Boobeaucracy except at regularly-stated intervals, would you not?
And you would be wrong.
First, billings. There was a bill (which I paid) for my recent visit to Dana-Farber to see my surgeon for the final post-surgical follow-up this year. Fine.
And then there was another bill, from the hospital where the surgery was performed, because my surgeon does her surgery there.
Mind you, the hospital did nothing -- not one thing -- to make this visit possible. It wasn't held in their building. Their resources were not used for scheduling it. Her time was not taken up when she could have been in surgery, as this appointment was during one of her standard clinics. The hospital did nothing. But since she did the surgery at their hospital, they get to bill me for a follow-up. And, to pile Pelion on Ossa (look it up, look it up), they billed me as if this was just an additional bill from last August that had somehow been missing since then. No record anywhere on the bill that this was for the follow-up. I had to call to figure that out.
This is the first time in the whole farrago of bills that I have been billed by one facility for receiving services at another facility. The only resources I used from Brigham and Women's Hospital were the computing, printing, envelop-stuffing, and postage required to send out the bill. This seems to have justified a bill of more than $100 dollars, of which I am paying $27.50.
AND THEN!
CVS Caremark, who recently took over the contract for the Federal Employees Benefit Program's Special Pharmacy, called today -- yes, on Memorial Day -- to find out if I was still taking Neulasta. The person calling didn't know what the drug was for, only that it was an expensive injectable. I clearly explained that there was no way I was taking Neulasta for nine months because that much chemotherapy would kill an elephant, and she said, "Then I'll close the account."
Right. Because no one can write a computer program to look at open accounts and pull ones that look funny for review by a human, another whole group of humans are working overtime on a holiday weekend and billing the government for their time.
Which means I (and you, if you pay taxes) just paid for this foolishness. It's enough to make a person really rather annoyed!
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Showing posts with label Rage Against the Boobeaucracy. Show all posts
Showing posts with label Rage Against the Boobeaucracy. Show all posts
Monday, May 28, 2012
Friday, April 6, 2012
In which it is possibly explained why people call me "Upbeat"
Well, you know how it is. You find out you have a life-threatening illness, and you have to annouce it to your friends.
I was reading over some old emails prior to deleting them, and found that this is how I had announced TWCT to a friend who is an Episcopal priest (but hasn't found a place to exercise that priesthood since moving to New Mexico):
" Hi,
First, thank you for your long and newsy letter. I understand – not as fully as you live it, but I do understand – what it is to have a sense of unrealized priesthood. Lately, the desire to preach is on me again, not that our priest isn’t good at it, but I have Thoughts.
Or I had thoughts. Since the 17th, they’ve all been focused on one thing. I have breast cancer.
I never expected to live a long time, but I was really hoping for heart disease. Of course, I may beat this and emerge a curly-haired blonde. I’ve already decided that since I have the most beautiful middle-aged hair on the planet, and since anything less would make me very sad, I am going either with bandanas or really cheesy wigs in colors like bright green. But not pink. The first person to pin a pink ribbon on me is getting a punch in the eye."
My hatred for pink is undiminished. But this also made me realize that "someone is getting a punch in the eye," has pretty much characterized my approach to dealing with the Boobeaucracy. And you know, while it may have been a bit hard on some of the people who had the misfortune to get in my way and some of them may not have deserved it, on the whole it wasn't a bad approach.
Except for one thing. I have already told the Bravest Man Alive loudly, vociferously, repeatedly, and with great variety that any obit for me is never, ever, EVER going to say, "after a long battle with cancer." It may say, "died, after a long battle with what she called the Boobeaucracy, from cancer."
I will most certainly end up dead. But I will never be defeated.
(And no, I haven't had any bad news. Just... going through a few things, is all.)
I was reading over some old emails prior to deleting them, and found that this is how I had announced TWCT to a friend who is an Episcopal priest (but hasn't found a place to exercise that priesthood since moving to New Mexico):
" Hi,
First, thank you for your long and newsy letter. I understand – not as fully as you live it, but I do understand – what it is to have a sense of unrealized priesthood. Lately, the desire to preach is on me again, not that our priest isn’t good at it, but I have Thoughts.
Or I had thoughts. Since the 17th, they’ve all been focused on one thing. I have breast cancer.
(This space reserved for a variety of highly mixed emotions)
I won’t dump all the medicalese on you. [Her spouse] can do that if
he wants, and you want. Suffice to say that my choices (oy, such choices!) are
between a lumpectomy followed by chemo and radiation, or depending on some
genetic stuff they are now doing, a double mastectomy and ovary removal.
I never expected to live a long time, but I was really hoping for heart disease. Of course, I may beat this and emerge a curly-haired blonde. I’ve already decided that since I have the most beautiful middle-aged hair on the planet, and since anything less would make me very sad, I am going either with bandanas or really cheesy wigs in colors like bright green. But not pink. The first person to pin a pink ribbon on me is getting a punch in the eye."
My hatred for pink is undiminished. But this also made me realize that "someone is getting a punch in the eye," has pretty much characterized my approach to dealing with the Boobeaucracy. And you know, while it may have been a bit hard on some of the people who had the misfortune to get in my way and some of them may not have deserved it, on the whole it wasn't a bad approach.
Except for one thing. I have already told the Bravest Man Alive loudly, vociferously, repeatedly, and with great variety that any obit for me is never, ever, EVER going to say, "after a long battle with cancer." It may say, "died, after a long battle with what she called the Boobeaucracy, from cancer."
I will most certainly end up dead. But I will never be defeated.
(And no, I haven't had any bad news. Just... going through a few things, is all.)
Thursday, March 15, 2012
First follow-up!
Today we rose before dawn, ate breakfast, and I took off through the early rush-hour traffic to Dana-Farber, where I barely had time to fasten on my radio-tracking button before I was led to an examination room.
Dr. Lin is friendly, fast, and thorough. She tells me that in the next couple of months the left breast, as the radiation-induced swelling declines, may feel lumpy or uneven -- good to know, as otherwise I might be freaking out.
Otherwise, nothing. I can come back in July for a mammogram and a visit with the nurse practitioner. I will be seeing one or the other of them, alternately, every six months for about three years, then just annually, then... not.
In other words, I am as cured as I can be at this point. A trip next Tuesday to let the surgeon admire her handiwork, and I am DONE. Or done-ish. Or something.
It's never really over. I can't call myself a cancer survivor unless I die of something else. Not that this depresses me, mind you! I always wanted something more than "She was a survivor" as my epitaph, and now I have more of a chance to earn something more interesting.
And I will, because as I was checking out, I asked if I could go see the people in the Patient Advocate office. The nice woman at the check-out desk couldn't find their location in her directory. She sent me to the Patient and Family Services office (home of the Volunteer Coordinator), but that wasn't the right place -- and though I did obtain the Patient Advocate phone number there, I was not told where they were located.
I did, however, find out that there is a Patient Advisory council. They like you to be out of treatment for six months to a year before you join it, so that you'll have a sense of objectivity again (instead of being an object). But if they think that's going to make me less persistant about fixing some of these systemic things, they have another think coming. I may not be steaming from both ears and the top of my head any more, but I still have all my notes!
Dr. Lin is friendly, fast, and thorough. She tells me that in the next couple of months the left breast, as the radiation-induced swelling declines, may feel lumpy or uneven -- good to know, as otherwise I might be freaking out.
Otherwise, nothing. I can come back in July for a mammogram and a visit with the nurse practitioner. I will be seeing one or the other of them, alternately, every six months for about three years, then just annually, then... not.
In other words, I am as cured as I can be at this point. A trip next Tuesday to let the surgeon admire her handiwork, and I am DONE. Or done-ish. Or something.
It's never really over. I can't call myself a cancer survivor unless I die of something else. Not that this depresses me, mind you! I always wanted something more than "She was a survivor" as my epitaph, and now I have more of a chance to earn something more interesting.
And I will, because as I was checking out, I asked if I could go see the people in the Patient Advocate office. The nice woman at the check-out desk couldn't find their location in her directory. She sent me to the Patient and Family Services office (home of the Volunteer Coordinator), but that wasn't the right place -- and though I did obtain the Patient Advocate phone number there, I was not told where they were located.
I did, however, find out that there is a Patient Advisory council. They like you to be out of treatment for six months to a year before you join it, so that you'll have a sense of objectivity again (instead of being an object). But if they think that's going to make me less persistant about fixing some of these systemic things, they have another think coming. I may not be steaming from both ears and the top of my head any more, but I still have all my notes!
Monday, October 31, 2011
And... They Get Me Again.
About two weeks ago, I got a call from the administrative assistant in the medical oncologist's office. "Your appointment is all set with the radiologist. A week before, just call this number, and the Radiology Library will send you your films. Bring them to your appointment."
So today I called. A rushed voice said, "Radiology!" I explained my request. "Well! You need to send me a letter."
Now, this does make sense. Can't have voices on the phone demanding confidential records. But with a week to get this done? Not good.
"That's not what I was told, and I only have a week to get this done." Was my voice rising? Yes.
"Someone's given you the wrong information." At which point I became inarticulate and hung up.
I have since spoken to the medicaal onc's office again, as well as to Patient and Family Services and Risk Management, and found out the following:
* The Radiology Library person should have offered to email me a request form. It's the job of. Each department to explain their procedures to patients; this was not done well in my case.
* Even with this form, I would still need to contact the surgeon's office to get my "external" films -- the ones I went through Hell to get in July.
In other news, the reason my medication info took so long to make it into the LMR is that my first appointment ar D-F was a consultation, and since many patients only come for that, they wait for the second appointment. In my case, this was with the surgeon, who should have signed something then to start the process, but did not. This is a well known break in the system and will be reviewed at the next QC meeting.
And finally, no one knows who the pharmacist was that I met with, or where or what the list of meds was that she had.
My internal films are being sent to me, and I have arranged to get my external films myself. And I am exhausted.
So today I called. A rushed voice said, "Radiology!" I explained my request. "Well! You need to send me a letter."
Now, this does make sense. Can't have voices on the phone demanding confidential records. But with a week to get this done? Not good.
"That's not what I was told, and I only have a week to get this done." Was my voice rising? Yes.
"Someone's given you the wrong information." At which point I became inarticulate and hung up.
I have since spoken to the medicaal onc's office again, as well as to Patient and Family Services and Risk Management, and found out the following:
* The Radiology Library person should have offered to email me a request form. It's the job of. Each department to explain their procedures to patients; this was not done well in my case.
* Even with this form, I would still need to contact the surgeon's office to get my "external" films -- the ones I went through Hell to get in July.
In other news, the reason my medication info took so long to make it into the LMR is that my first appointment ar D-F was a consultation, and since many patients only come for that, they wait for the second appointment. In my case, this was with the surgeon, who should have signed something then to start the process, but did not. This is a well known break in the system and will be reviewed at the next QC meeting.
And finally, no one knows who the pharmacist was that I met with, or where or what the list of meds was that she had.
My internal films are being sent to me, and I have arranged to get my external films myself. And I am exhausted.
Thursday, October 20, 2011
VICTORY! (Or something very close to it!)
I spent time today talking with the Risk Manager at Dana-Farber, and then with the Patient and Family Services manager, and then with her and the leader of the IT group for new patient intake.
Turns out the form I was complaining about (ancient word document, formatted for completion on type-writer or by hand, no secure way to send it back, no way to capture its data digitally) is specific to the breast cancer group and maybe a few more. Nonetheless, THEY ARE GOING TO REVIEW THE FORM FOR TRANSFER INTO AN ON-LINE FORMAT and also review the question of how data gets back to them and into The System.
They listened to one patient, and are (possibly) changing the way every breast cancer patient who chooses Dana-Farber experiences the intake process.
I am hugely impressed, and so happy I could dance.
(They are still going to address the medication reconciliation issues. That's apparently a manual process, but once the data is in, it should show up everywhere. But I feel a certain level of trust now that they will track the issue I had to its source.)
Boobeucracy, I will beat you or change you!
Turns out the form I was complaining about (ancient word document, formatted for completion on type-writer or by hand, no secure way to send it back, no way to capture its data digitally) is specific to the breast cancer group and maybe a few more. Nonetheless, THEY ARE GOING TO REVIEW THE FORM FOR TRANSFER INTO AN ON-LINE FORMAT and also review the question of how data gets back to them and into The System.
They listened to one patient, and are (possibly) changing the way every breast cancer patient who chooses Dana-Farber experiences the intake process.
I am hugely impressed, and so happy I could dance.
(They are still going to address the medication reconciliation issues. That's apparently a manual process, but once the data is in, it should show up everywhere. But I feel a certain level of trust now that they will track the issue I had to its source.)
Boobeucracy, I will beat you or change you!
Saturday, October 15, 2011
Third day == heavy day
It's pretty clear now that the third day after chemo is the one where everything crashes for me. It's the day that makes you realize you really have been poisoned. There's no way to "power through" the weariness, as I can do on most other days.
Thank goodness, the Wonder Family did our grocery shopping with impeccable attention to the list I sent them yesterday, when I still had a functional brain. The ice cream got into the freezer right away, but it took me several hours to get the rest of it stowed.
I filed a Patient Safety Incident on-line form with Dana-Farber, and a legal eagle friend in NYC has advised at least discussing this situation with a similar person up here. Just in case. Spouse and I are agreed that we certainly do not want money from them; we just want to know with quite a great deal of specificity how this problem will be corrected.
Actually, what I really want is to sit down with someone in their IT department and find out why they have a perfectly lovely on-line form for safety incidents and are still using a form they expect patients to print out and fill up by hand for new patient info. It makes no sense, no it doesn't.
Thank goodness, the Wonder Family did our grocery shopping with impeccable attention to the list I sent them yesterday, when I still had a functional brain. The ice cream got into the freezer right away, but it took me several hours to get the rest of it stowed.
I filed a Patient Safety Incident on-line form with Dana-Farber, and a legal eagle friend in NYC has advised at least discussing this situation with a similar person up here. Just in case. Spouse and I are agreed that we certainly do not want money from them; we just want to know with quite a great deal of specificity how this problem will be corrected.
Actually, what I really want is to sit down with someone in their IT department and find out why they have a perfectly lovely on-line form for safety incidents and are still using a form they expect patients to print out and fill up by hand for new patient info. It makes no sense, no it doesn't.
Tuesday, September 13, 2011
And yet MORE billing
Blue Cross has sent us a co-pay for the Neulasta I never picked up at the health care plan. So tomorrow (today) I get to call them and ask what they want me to do with this Very Large Check.
This whole thing is totally, patently, absurd. Kafka could not invent it.
In other news, I am feeling OK, and expecting to feel better.
This whole thing is totally, patently, absurd. Kafka could not invent it.
In other news, I am feeling OK, and expecting to feel better.
Thursday, September 8, 2011
I'd give up, but what good would that do?
Oh my goodness, people, has this been a hellish three days!
As you may recall, I was trying to figure out if I could really get Neulasta, the Wonder Drug, sent to me at home from the mail-order pharmacy used by FEPBlue. The answer appeared to be "yes," and the co-pay appeared to be $0.00 -- a truly amazing and even a bit concerning difference from the original price of $1961.00 that I was given by the healthplan pharmacy.
So. First I had to go through getting a pre-authorization done again, which meant getting the telephone number from the insurance company's Customer Service Rep and passing it to the doctor's office. And then I had to get the prescription sent to the pharmacy, which meant getting another number to the doctor's office. And then I had to get the original submission to the healthplan pharmacy stopped, so they don't bill me (this is still incomplete).
This is where we should all heave a sigh of pity for doctors who don't have the totally awesome staff that the Dana-Farber doctors have. Because when I tell you that eventually today there was a THREE-WAY CONFERENCE CALL between the insurance company, the pharmacy, and the doctor's office in order to get the pharmacy to agree that yes, they had the prescription, and yes, they had the pre-approval authorization, and yes, the co-pay was indeed $0.00 and yes, they could arrange delivery -- all of that is only a faint shadow of what we have all been through trying to get this done.
Because first we had to get the insurance company to agree that even though they had paid the claim to the healthcare plan, I could still have a different prescription pre-approved.
And then we had to get the insurance company to fax a copy of the pre-approval to the doctor, so there was proof somewhere else other than their computer that this was so.
And then we had to get the pharmacy to agree that even though their computer wasn't showing the pre-approval, the fax from the insurance company PLUS the verbal confirmation from the insurance company on the phone was evidence that, in fact, the pre-approval was a real pre-approval.
And when I say "we" here, I mean that there were multiple rounds of me being told by Person A that "It's all set," only to call Number B and be told, "I'm sorry ma'am, I'm not seeing that in our System." and then calling the doctor's office and wailing and gnashing my teeth.
Between this and work and catering funerals and all, my stress bucket is so full that when they plug me into the chemo IV I will probably just fall asleep. The floor is tear-stained around my nice new recliner from all my horribly frustrating phone calls.
And all of this is because there's no part of the System at Enormous Giant Insurance Company Blue Cross that says, "Waaaaaaitaminute, don't we have a less expensive way to meet this patient's needs?"
I'm telling you, one and all -- while computers are wonderful things, software has to be constantly reviewed and adjusted to get the most out of any System. If you don't spend money on the perpetual improvement process as part of your commitment to The System, what happens is crap like this and like the multiple billing problem at Brigham & Women's and the anesthesia practise billing breast cancer patients for shoulder surgery services.
It's stupid, wasteful, and most importantly, it adds enormously to the frustration patients experience at what's already a sufficiently difficult time. It makes We the Patients feel certain that someone is taking advantage of us somewhere, makes us resent the bureaucracy that surrounds the healing process. And if more and more of a hospital's or insurance company's or a doctor's funding is going to come out of the public pocket, resentful taxpayer patients are not a good thing.
Right now, though, I'm leaning towards finding out where the servers for Partners Healthcare and Blue Cross of Massachusetts live and strolling through the premises with a very potent magnet. If I can manage to destroy their software, maybe they'd have to build a better system from scratch.
As you may recall, I was trying to figure out if I could really get Neulasta, the Wonder Drug, sent to me at home from the mail-order pharmacy used by FEPBlue. The answer appeared to be "yes," and the co-pay appeared to be $0.00 -- a truly amazing and even a bit concerning difference from the original price of $1961.00 that I was given by the healthplan pharmacy.
So. First I had to go through getting a pre-authorization done again, which meant getting the telephone number from the insurance company's Customer Service Rep and passing it to the doctor's office. And then I had to get the prescription sent to the pharmacy, which meant getting another number to the doctor's office. And then I had to get the original submission to the healthplan pharmacy stopped, so they don't bill me (this is still incomplete).
This is where we should all heave a sigh of pity for doctors who don't have the totally awesome staff that the Dana-Farber doctors have. Because when I tell you that eventually today there was a THREE-WAY CONFERENCE CALL between the insurance company, the pharmacy, and the doctor's office in order to get the pharmacy to agree that yes, they had the prescription, and yes, they had the pre-approval authorization, and yes, the co-pay was indeed $0.00 and yes, they could arrange delivery -- all of that is only a faint shadow of what we have all been through trying to get this done.
Because first we had to get the insurance company to agree that even though they had paid the claim to the healthcare plan, I could still have a different prescription pre-approved.
And then we had to get the insurance company to fax a copy of the pre-approval to the doctor, so there was proof somewhere else other than their computer that this was so.
And then we had to get the pharmacy to agree that even though their computer wasn't showing the pre-approval, the fax from the insurance company PLUS the verbal confirmation from the insurance company on the phone was evidence that, in fact, the pre-approval was a real pre-approval.
And when I say "we" here, I mean that there were multiple rounds of me being told by Person A that "It's all set," only to call Number B and be told, "I'm sorry ma'am, I'm not seeing that in our System." and then calling the doctor's office and wailing and gnashing my teeth.
Between this and work and catering funerals and all, my stress bucket is so full that when they plug me into the chemo IV I will probably just fall asleep. The floor is tear-stained around my nice new recliner from all my horribly frustrating phone calls.
And all of this is because there's no part of the System at Enormous Giant Insurance Company Blue Cross that says, "Waaaaaaitaminute, don't we have a less expensive way to meet this patient's needs?"
I'm telling you, one and all -- while computers are wonderful things, software has to be constantly reviewed and adjusted to get the most out of any System. If you don't spend money on the perpetual improvement process as part of your commitment to The System, what happens is crap like this and like the multiple billing problem at Brigham & Women's and the anesthesia practise billing breast cancer patients for shoulder surgery services.
It's stupid, wasteful, and most importantly, it adds enormously to the frustration patients experience at what's already a sufficiently difficult time. It makes We the Patients feel certain that someone is taking advantage of us somewhere, makes us resent the bureaucracy that surrounds the healing process. And if more and more of a hospital's or insurance company's or a doctor's funding is going to come out of the public pocket, resentful taxpayer patients are not a good thing.
Right now, though, I'm leaning towards finding out where the servers for Partners Healthcare and Blue Cross of Massachusetts live and strolling through the premises with a very potent magnet. If I can manage to destroy their software, maybe they'd have to build a better system from scratch.
Friday, September 2, 2011
I think I should just create a tag for money talk...
The pharmacy called today. You know the drug that's supposed to help my immune system out so I can do the chemo more rapidly than usual?
The co-pay, as in, "the money you pay after the insurance company has paid their share is $1,961.00 for two injections. And I will need four.
It's not like we don't have the money. We do; though I am starting to feel guilty about being such an expensive wench. But... we may re-think this "fast-track" approach. I need to find out if it would alter my probable survival rate to do the chemo more slowly.
All the other drugs? I got them as generics; the total cost was less than $10.00.
What the hell do people do who need things that are even more expensive, and more essential to survival?
The co-pay, as in, "the money you pay after the insurance company has paid their share is $1,961.00 for two injections. And I will need four.
It's not like we don't have the money. We do; though I am starting to feel guilty about being such an expensive wench. But... we may re-think this "fast-track" approach. I need to find out if it would alter my probable survival rate to do the chemo more slowly.
All the other drugs? I got them as generics; the total cost was less than $10.00.
What the hell do people do who need things that are even more expensive, and more essential to survival?
Wednesday, August 31, 2011
And Yet More Billing
So it turns out that the anesthesia department at B&W uses a single code to stand for several different surgeries, relying on the diagnostic code to tell the insurer what is going on.
And telling the consumer/patient NOTHING AT ALL.
I mean, when you go to a fancy restaurant and pay, oh, $35 for truffled goose liver or sake-soaked squid or something, would you be happy if your check showed thaat you had a grilled cheese sandwich with a code to tell your credit card company what you really had?
Some sort of action may be in order.
And telling the consumer/patient NOTHING AT ALL.
I mean, when you go to a fancy restaurant and pay, oh, $35 for truffled goose liver or sake-soaked squid or something, would you be happy if your check showed thaat you had a grilled cheese sandwich with a code to tell your credit card company what you really had?
Some sort of action may be in order.
Someone gets to have a bad day... not me, though!
The anesthesia bill was clearly coded wrong. The very nice customer service rep I spoke with says they will re-code it, resubmit it to the insurer, return the payment the insurer already made, and "generate a new responsibility" for me.
Query: the CSR was able to pull up my diagnosis on the computer and see that it didn't match the type of surgery for which I was billed. Why couldn't any other parts of The System do that? It shouldn't take a programming genius to restrict the list of valid codes based on the diagnostic code.
Query: the CSR was able to pull up my diagnosis on the computer and see that it didn't match the type of surgery for which I was billed. Why couldn't any other parts of The System do that? It shouldn't take a programming genius to restrict the list of valid codes based on the diagnostic code.
Tuesday, August 30, 2011
Billing.
And wouldn't you know, Bravest (the spouse) and I have both run into a bad streak of billing errors?
Bravest got told he had to pay a huge sum for a visit to the dermatologist. Turns out, someone had written the wrong code and thought he had maxed out on his yearly visits to a chiropractor. Neither of us has a chiropractor. (The phrase "manipulative visits" was a clue.)
I had a mysterious bill from Brigham and Women's with a previous balance of Quite A Lot of Money. I had never received a bill for that amount. Turns out, it was for services on August 3rd, the pre-op visit, which is the day I updated my billing and insurance information with them -- but the change didn't move as fast through The System as the bill did, so they sent that one to a place I haven't lived in more than 15 years, and billed the wrong insurance company. (I had to tell the lady on the phone to stop interrupting me and stop calling me "hon", too.)
And then I went to pay the anesthesia bill today -- same hospital, different department -- and it says I had shoulder surgery. Someone entered the wrong code. So there's another energy-draining phone call.
While we're on the subject, I fully expect to receive at least eight separate bills from Brigham & Women's, and probably more, to whit:
But God protect the poor people who aren't technically sophisticated and don't understand, for instance, the difference between an EOB and a bill. It's hellishly confusing for me and my husband, and we are reasonably astute consumers of medicine.
And then there are the ER bills...
Bravest got told he had to pay a huge sum for a visit to the dermatologist. Turns out, someone had written the wrong code and thought he had maxed out on his yearly visits to a chiropractor. Neither of us has a chiropractor. (The phrase "manipulative visits" was a clue.)
I had a mysterious bill from Brigham and Women's with a previous balance of Quite A Lot of Money. I had never received a bill for that amount. Turns out, it was for services on August 3rd, the pre-op visit, which is the day I updated my billing and insurance information with them -- but the change didn't move as fast through The System as the bill did, so they sent that one to a place I haven't lived in more than 15 years, and billed the wrong insurance company. (I had to tell the lady on the phone to stop interrupting me and stop calling me "hon", too.)
And then I went to pay the anesthesia bill today -- same hospital, different department -- and it says I had shoulder surgery. Someone entered the wrong code. So there's another energy-draining phone call.
While we're on the subject, I fully expect to receive at least eight separate bills from Brigham & Women's, and probably more, to whit:
- Lab work.
- Pathology.
- Radiology.
- Nuclear medicine (yes, they are separate.)
- Surgery.
- Anesthesia.
- Postoperative care.
- Any doctor who so much as glanced in my direction.
But God protect the poor people who aren't technically sophisticated and don't understand, for instance, the difference between an EOB and a bill. It's hellishly confusing for me and my husband, and we are reasonably astute consumers of medicine.
And then there are the ER bills...
Monday, August 22, 2011
A long day, and a lot to digest (doing the math)
We met with the oncologist today. It was a long session, and some of it I need my notes for. For example, she obligingly outlined the whole anti-nausea regimen, which I cannot remember off the top of my weary head.
But here's the basics:
I was then presented with a number of choices, which I am not going to discuss in detail. Instead I will outline what I'm going to do. Which is:
Now, the math. I am putting this here because several people have asked me, "Do you HAVE to do chemo/radiation?
The answer is yes, and here's why:
There's a bunch of logistics I have to clear, including making sure I can get the blood-boosting drug. And this fast chemo regimen is really going to wipe me out, energy-wise. I may just crawl into my hole and not come out for two months.
Oh, and it seems that the loss of hair is VERY predictable. If I start chemo on 9/12, my hair will fall out on 9/30.
More on the drug names and such in our next.
Oh, and there was a definite Boob Wars moment. As we were ushered into the exam room, our usherette handed my a clipboard with a "List of your medications, please confirm them," on it. IT WAS COMPLETELY WRONG. All that was there were the two post-surgery prescriptions (neither of which I need any more) and an asthma inhaler as prescribed by the folks in the ER two weeks ago.
I have given them the extensive list of my medications three times now. And I sat there and watched the pre-op nurse type them in, from a printout given to me directly by my PCP.
I'm feeling pretty mellow towards Dana-Farber at the moment, but if this happens again there will be hell to pay. Or maybe just heck, if I'm feeling merciful.
But here's the basics:
- The tumor was 1.1 cm. The margins were clear, though one was kind of close, due to the position of the tumor at the back of the breast.
- The two sentinal lymph nodes were clear.
- HOWEVER, there was some sign of Lymphatic Vessel Carcinoma, meaning that cancer cells had started to leave the tumor and were moving into the lymph system within the breast.
I was then presented with a number of choices, which I am not going to discuss in detail. Instead I will outline what I'm going to do. Which is:
- Start chemo on September 12th, and have chemo every other week for four weeks.
- Have a shot of a blood-stimulating drug the day after chemo that will speed up my recovery.
Now, the math. I am putting this here because several people have asked me, "Do you HAVE to do chemo/radiation?
The answer is yes, and here's why:
- If I do nothing, the chance that the cancer will metastesize somewhere else in my body, like my brain, is about 15%. Chemo will half that, down to 7.5%. Or, to put it another way, it will increase my chances of NOT having metasteses from 85% to 92.5%.
- If I do nothing, the chance of cancer recurring in the same breast is about 25%. Having radiation drops this to 10%. Or, a 90% chance of not needing a mastectomy in the future.
There's a bunch of logistics I have to clear, including making sure I can get the blood-boosting drug. And this fast chemo regimen is really going to wipe me out, energy-wise. I may just crawl into my hole and not come out for two months.
Oh, and it seems that the loss of hair is VERY predictable. If I start chemo on 9/12, my hair will fall out on 9/30.
More on the drug names and such in our next.
Oh, and there was a definite Boob Wars moment. As we were ushered into the exam room, our usherette handed my a clipboard with a "List of your medications, please confirm them," on it. IT WAS COMPLETELY WRONG. All that was there were the two post-surgery prescriptions (neither of which I need any more) and an asthma inhaler as prescribed by the folks in the ER two weeks ago.
I have given them the extensive list of my medications three times now. And I sat there and watched the pre-op nurse type them in, from a printout given to me directly by my PCP.
I'm feeling pretty mellow towards Dana-Farber at the moment, but if this happens again there will be hell to pay. Or maybe just heck, if I'm feeling merciful.
Tuesday, August 16, 2011
Things They (Whoever They Are) Never Tell You
Here's a list of things I wish any one of my doctors had thought to tell me:
- You will get at least two free bras that will be more comfortable than anything you will find in a store, because they are designed for support rather than support and display. (Not knowing this cost me $110, and means I have one marginally comfortable and two not-very-comfortable bras, in addition to the freebies.)
- You should go to the dentist and get any fillings taken care of ASAP, as you shouldn't start chemo with any sort of infection in your mouth. (Fortunately, we are compliant consumers of dental health services, meaning that I have clean teeth and an appointment for an overlay filling in two weeks. But my dental hygienist told me this, not the oncologist.)
Friday, August 5, 2011
I'm afraid the Boobeaucracy won this one.
As I noted in my last, the people at the Dana-Farber Friend's Place Shop have the machine that measures limb volume. They also provide massage therapy for lymphedema, special exercise classes for those seeking to avoid or alleviate lymphedema, and compression garments for those with lymphedema who want to keep swelling under control.
Please note that they charge for all of this. Some of it is covered by insurance; some of it is on the patient's dime.
I buzzed in there to get measured this morning, per the prescription from the nurse at the Brigham & Women's Comprehensive Brest Health Center. Who had, of course, told me, "Call here if you have any questions." (I think you can see where part of this is going.)
While I was being measured, I naturally asked a couple of questions about how to avoid lymphedema. After all, it's fairly horrible, my chances of getting it after lymph node removal are enhanced due to being obese, and who wouldn't want to avoid something like that?
Also, this one. "Most people buy a compression sleeve and wear it when they travel, just in case."
And the more I thought about this, the more I thought about it. I thought about it as I bought a few scarves and said good-bye. I thought about it when I was visiting the grandbaby (who says, "Thank you, Bubbe!" as if saying thank-you was the most fun thing in the world), and I thought about it when I walked in the house, put down my stuff, and burst into tears. And even after I controlled that outburst, the tears kept coming; while I was fixing lunch, while I was cleaning up after lunch, while I was making a potato salad to bring "down the beach" tomorrow. I am planning on swimming in the ocean tomorrow, one of my top ten favorite things.
"Avoid swimming."
When I couldn't stand it any more, I called the Comprehensive Breast Health Center. Who comprehensively told me that since I was a patient of a Dana-Farber doctor, I would have to call my doctor at Dana-Farber.
Which I did, and managed to explain, between sobs, that I had heard and read all this stuff and it was freaking me out and I needed some real information about my chances of getting this thing.
The office nurse called me back, and said that people who are only having signal node biopsies never have to worry about all that stuff. She had even called down to the Friend's Center and asked them what the hell they'd told me. As far as travel goes, the business about needed a compression sleeve turns out to be based on older research, disproven by more recent work with larger populations. (Please note that the person selling the sleeves didn't appear to know this.) I can drive as much as I want to. While they wouldn't recommend me going out to rake leaves for six hours with no previous exercise for months, I can most assuredly rake leaves and swim. And anyway, IF I feel any swelling or tightness or have any spongy dimpling of the arm, they will send me to PT, where my remaining nodes will be manipulated until they drain properly.
I'm still not exactly settled in my mind. The prospect of lymphedema is very frightening to me, and so is having to live a life of constant dread and limitation. When I got off the phone, even though I was relieved, I wept for about five minutes, out of sheer grief that this is happening to me. But I am really glad I checked with the doctor's office, instead of rushing out to buy things and sign up for things I may never need.
Bravest was, of course, distressed by my distress. He has had experiences around getting used to limitations (losing his one remaining eye that had sight when he was 13) that put anything I may go through to shame, which I try to remember before I inflict my vapors on him. And he knows that in all this, no matter how much a doctor may know, the practice of medicine is still practice, not certainty, and opinions, no matter how well-founded, are still opinions. He's pleased with me for calling the doctor's office and getting more complete information, instead of just sitting and sobbing.
But I'm afraid I have to score this one as a win for the Boobeaucracy. I let my peace of mind be disturbed by someone who, under the guise of being a "friend," was actually trying to sell me something.
Please note that they charge for all of this. Some of it is covered by insurance; some of it is on the patient's dime.
I buzzed in there to get measured this morning, per the prescription from the nurse at the Brigham & Women's Comprehensive Brest Health Center. Who had, of course, told me, "Call here if you have any questions." (I think you can see where part of this is going.)
While I was being measured, I naturally asked a couple of questions about how to avoid lymphedema. After all, it's fairly horrible, my chances of getting it after lymph node removal are enhanced due to being obese, and who wouldn't want to avoid something like that?
- Avoid repetitive strain, like raking leaves or swimming or kneading bread.
- Avoid long periods of gripping a steering wheel. No long car trips! (Unanwered: what is a long car trip?)
- Avoid hoisting myself up the (steep) staircase at home by holding on to the handrail. (This is impossible for me.) Alternatively, stop every three steps (that's four times in one ascent), release the stair rail, and wave my arm around over my head.
- Don't allow anyone to take blood pressures, draw blood, or administer injections in my left arm, and wear a medic alert bracelet with this information on it. (I can't wear bracelets; they cause pain all up and down my arms and a feeling like my hand has been chopped off.)
- Stop sleeping on my left side (a habit of more than 30 years standing).
- Wear a compression sleeve when I fly. (hot, uncomfortable, very weird-looking)
- Wear gloves when doing anything that could scratch my hands or arms, like planting plants or weeding. (I cannot do this; I have to feel the dirt)
- Don't allow manicurists to cut my cuticles.
- Never let my arm get tired.
- Do a set of exercises daily (I may do this one).
- For the rest of my life.
Also, this one. "Most people buy a compression sleeve and wear it when they travel, just in case."
And the more I thought about this, the more I thought about it. I thought about it as I bought a few scarves and said good-bye. I thought about it when I was visiting the grandbaby (who says, "Thank you, Bubbe!" as if saying thank-you was the most fun thing in the world), and I thought about it when I walked in the house, put down my stuff, and burst into tears. And even after I controlled that outburst, the tears kept coming; while I was fixing lunch, while I was cleaning up after lunch, while I was making a potato salad to bring "down the beach" tomorrow. I am planning on swimming in the ocean tomorrow, one of my top ten favorite things.
"Avoid swimming."
When I couldn't stand it any more, I called the Comprehensive Breast Health Center. Who comprehensively told me that since I was a patient of a Dana-Farber doctor, I would have to call my doctor at Dana-Farber.
Which I did, and managed to explain, between sobs, that I had heard and read all this stuff and it was freaking me out and I needed some real information about my chances of getting this thing.
The office nurse called me back, and said that people who are only having signal node biopsies never have to worry about all that stuff. She had even called down to the Friend's Center and asked them what the hell they'd told me. As far as travel goes, the business about needed a compression sleeve turns out to be based on older research, disproven by more recent work with larger populations. (Please note that the person selling the sleeves didn't appear to know this.) I can drive as much as I want to. While they wouldn't recommend me going out to rake leaves for six hours with no previous exercise for months, I can most assuredly rake leaves and swim. And anyway, IF I feel any swelling or tightness or have any spongy dimpling of the arm, they will send me to PT, where my remaining nodes will be manipulated until they drain properly.
I'm still not exactly settled in my mind. The prospect of lymphedema is very frightening to me, and so is having to live a life of constant dread and limitation. When I got off the phone, even though I was relieved, I wept for about five minutes, out of sheer grief that this is happening to me. But I am really glad I checked with the doctor's office, instead of rushing out to buy things and sign up for things I may never need.
Bravest was, of course, distressed by my distress. He has had experiences around getting used to limitations (losing his one remaining eye that had sight when he was 13) that put anything I may go through to shame, which I try to remember before I inflict my vapors on him. And he knows that in all this, no matter how much a doctor may know, the practice of medicine is still practice, not certainty, and opinions, no matter how well-founded, are still opinions. He's pleased with me for calling the doctor's office and getting more complete information, instead of just sitting and sobbing.
But I'm afraid I have to score this one as a win for the Boobeaucracy. I let my peace of mind be disturbed by someone who, under the guise of being a "friend," was actually trying to sell me something.
Monday, July 25, 2011
And some of us re-shape the hole.
In our search for assistance for Bravest on the day of surgery, today I called the Surgical Patient Relations Family Waiting Room. Why not? It was right there on the letter sent to me by the surgeon's coordinator as the place where he would be waiting for me.
Ooops. Letter's wrong! Because I'm having day surgery (and thus SAVING THE SYSTEM THOUSANDS OF DOLLARS), instead of waiting in a bright, airy, well-furnished room with little side rooms where a patient spouse can even catch some zzs, Bravest will have to spend more than 10 hour in a claustrophobic pit in the basement.
Also, Ooops! We don't do that sort of thing here, let me connect you with Patient and Family Relations.
Ooops! We don't have anyone who can help you here, let me connect you with the Patient Coordinator.
Ooops! All we do here is make sure you're going to be safe when you go home, let me connect you with Patient and Family Relations.
At which point I lost it, to the extent that when the very nice fellow who had the misfortune to answer the phone as Patient Coordinator couldn't get any further than I did, he had a social worker call me back.
God bless my former profession. Most people think of social workers as less-exalted psychologists; but what we really are is problem-solvers who will also listen to you rant in order to get at ever-deeper levels of solvable problems. Which is why you find social workers leading the way in fields like cognitive therapy... but I digress.
THIS fine example of a fine group of people went and wrought mightily with the people at Patient and Family Relations, AND the people in the Brechthold Center (the fancy waiting-room for families of overnight patients) and called me back in a very few hours with the following:
All this is well within their mandate and should have been known to all the people who spoke to me -- only it's not in writing and we're "non-standard", so no one on the front lines knew how to respond.
I have expressed my sincere thanks, as well as my hope that something will be put in writing for the P&FR standard operating procedures manual. If there is such a thing. If not, I have offered to write it.
After all, you either change the square peg to fit the round hole, or re-shape the hole. And since there are sure to be other situations where a significant other has disabilities and needs special accommodations, and since such is the mandate of the ADA, among other things, AND since this is supposedly one of the Best Hospitals in Boston, they are going to change.
This cancer is going to have Meaning, or I'll know the reason why.
(I'd score this as a win, but we won't know if we've really won until August 9th.)
Ooops. Letter's wrong! Because I'm having day surgery (and thus SAVING THE SYSTEM THOUSANDS OF DOLLARS), instead of waiting in a bright, airy, well-furnished room with little side rooms where a patient spouse can even catch some zzs, Bravest will have to spend more than 10 hour in a claustrophobic pit in the basement.
Also, Ooops! We don't do that sort of thing here, let me connect you with Patient and Family Relations.
Ooops! We don't have anyone who can help you here, let me connect you with the Patient Coordinator.
Ooops! All we do here is make sure you're going to be safe when you go home, let me connect you with Patient and Family Relations.
At which point I lost it, to the extent that when the very nice fellow who had the misfortune to answer the phone as Patient Coordinator couldn't get any further than I did, he had a social worker call me back.
God bless my former profession. Most people think of social workers as less-exalted psychologists; but what we really are is problem-solvers who will also listen to you rant in order to get at ever-deeper levels of solvable problems. Which is why you find social workers leading the way in fields like cognitive therapy... but I digress.
THIS fine example of a fine group of people went and wrought mightily with the people at Patient and Family Relations, AND the people in the Brechthold Center (the fancy waiting-room for families of overnight patients) and called me back in a very few hours with the following:
- Bravest can wait in the Brechthold Center, in comfort.
- People there will make sure he's comfortable and will help him get around if/when he needs help.
- My surgeon can find him there to tell him how I'm doing.
All this is well within their mandate and should have been known to all the people who spoke to me -- only it's not in writing and we're "non-standard", so no one on the front lines knew how to respond.
I have expressed my sincere thanks, as well as my hope that something will be put in writing for the P&FR standard operating procedures manual. If there is such a thing. If not, I have offered to write it.
After all, you either change the square peg to fit the round hole, or re-shape the hole. And since there are sure to be other situations where a significant other has disabilities and needs special accommodations, and since such is the mandate of the ADA, among other things, AND since this is supposedly one of the Best Hospitals in Boston, they are going to change.
This cancer is going to have Meaning, or I'll know the reason why.
(I'd score this as a win, but we won't know if we've really won until August 9th.)
Monday, July 18, 2011
Undermining The System from Within
You know, if the medical professionals of this great nation ever decided to speak with any sort of unity, we'd have single-payor health care faster than you can say "Michelle Bachmann is crazy."
Witness our session today with the skin doc, who did a little frosting of a spot or so on Bravest's psoriatic bod and (GASP) suggested that the psoriasis might be made less bothersome by a little sun exposure. A very little.
Since Bravest and I see this fellow together (so I can receive instructions and be made aware of problem spots), there is a certain amount of what might be called marital persiflage.
Doc: "Things OK at work, any unusual stress...?"
Bravest: "Oh no, we've retired." Bravest often uses the Royal or Publisher's pronoun, don't ask me why.)
Lirazel: "I'm afraid the only stress in his life is caused by me."
Which was taken as a joke, until it was my turn and I had to tell the doctor about my own situation. Which, of course, is stressful to Bravest, though probably not the cause of his increasing psoriasis.
It turns out that the BRCA gene variants (which I do not have, remember?) also have a role in skin cancers. Otherwise, I have nothing to worry about -- dermatologists don't even get involved in the treatment of radiation side-effects any more, as the targeting of the treatments has gotten quite precise.
And then we got into a discussion of the Boobeaucracy, and he nearly stopped being a doctor as he shouted, "Les societies d'insurance: A la LANTERNE!" Or words to that effect.
There are a LOT of businesses making big money off of breast cancer, and the doctors all know it.
Witness our session today with the skin doc, who did a little frosting of a spot or so on Bravest's psoriatic bod and (GASP) suggested that the psoriasis might be made less bothersome by a little sun exposure. A very little.
Since Bravest and I see this fellow together (so I can receive instructions and be made aware of problem spots), there is a certain amount of what might be called marital persiflage.
Doc: "Things OK at work, any unusual stress...?"
Bravest: "Oh no, we've retired." Bravest often uses the Royal or Publisher's pronoun, don't ask me why.)
Lirazel: "I'm afraid the only stress in his life is caused by me."
Which was taken as a joke, until it was my turn and I had to tell the doctor about my own situation. Which, of course, is stressful to Bravest, though probably not the cause of his increasing psoriasis.
It turns out that the BRCA gene variants (which I do not have, remember?) also have a role in skin cancers. Otherwise, I have nothing to worry about -- dermatologists don't even get involved in the treatment of radiation side-effects any more, as the targeting of the treatments has gotten quite precise.
And then we got into a discussion of the Boobeaucracy, and he nearly stopped being a doctor as he shouted, "Les societies d'insurance: A la LANTERNE!" Or words to that effect.
There are a LOT of businesses making big money off of breast cancer, and the doctors all know it.
Sunday, July 17, 2011
Genes and the Boobeaucracy
So, first read this.
As a result of the gene patent, only one lab in the world currently does the genetic tests I've had done.
The first run of tests, for the BRCA1 and BRCA2 gene variants, "only" cost $586, of which my copay is $86. So far, fairly good.
The more extensive testing came in at $3500, of which my share is $500.
More than four grand so that I can make an informed decision about surgery and treatment. Fortunately, insurance covers nearly all of it, and even more fortunately, we have the money.
But suppose we didn't?
The really stupid part of this, though? Having this testing done means I am totally comfortable about going with a less invasive, less expensive form of surgery. Saving the insurance company tens of thousands of dollars more than they would have paid in the past, when once size fit all. Seriously, the average cost of treating a breast cancer patient is about $50k. Part of what skews the results upwards are unnecessary mastectomies.
In other words, the insurance company should be paying ME to figure things out like this.
As a result of the gene patent, only one lab in the world currently does the genetic tests I've had done.
The first run of tests, for the BRCA1 and BRCA2 gene variants, "only" cost $586, of which my copay is $86. So far, fairly good.
The more extensive testing came in at $3500, of which my share is $500.
More than four grand so that I can make an informed decision about surgery and treatment. Fortunately, insurance covers nearly all of it, and even more fortunately, we have the money.
But suppose we didn't?
The really stupid part of this, though? Having this testing done means I am totally comfortable about going with a less invasive, less expensive form of surgery. Saving the insurance company tens of thousands of dollars more than they would have paid in the past, when once size fit all. Seriously, the average cost of treating a breast cancer patient is about $50k. Part of what skews the results upwards are unnecessary mastectomies.
In other words, the insurance company should be paying ME to figure things out like this.
Thursday, July 7, 2011
Signatures
OK, OK, I know it's all to protect my privacy. But I spent a full 20 minutes working with two nurse LPs this evening, filling up forms so that the Dana-Farber docs can share information with my PCP. A separate form for each doctor at D-F.
And this, after I signed a consent form at D-F allowing and asking them to share my information with my PCP. And I have been advised that I will still probably need to beat them about the head and shoulders (figuratively speaking) every time I'm seen there in order to make sure this happens.
I can open a bank account and apply for a mortgage with fewer bits of paper. Poor trees.
Endoscopy get as of 7/14. After that, there will be nothing left to probe.
And this, after I signed a consent form at D-F allowing and asking them to share my information with my PCP. And I have been advised that I will still probably need to beat them about the head and shoulders (figuratively speaking) every time I'm seen there in order to make sure this happens.
I can open a bank account and apply for a mortgage with fewer bits of paper. Poor trees.
Endoscopy get as of 7/14. After that, there will be nothing left to probe.
Tuesday, June 28, 2011
Stress cache overflow / Edge of the Next Wave
So, the doctors at Dana-Farber are great. They really met me half-way, understanding at once that I am able to comprehend medical stuff and deal with it fairly well (at least on the surface -- we're coming to that).
The systems at Dana-Farber were not reassuring. When I went to check out from seeing the three doctors, the tests they had told me they were ordering were not in The System, and people had to be paged to confirm what I remembered.
And when I got down to the lab, two out of the three blood tests ordered were missing, and I had to be insistant, and at that point I lost it.
How is a person supposed to feel safe if the best cancer institute in Boston can lose a set of test orders twice in less than four hours? And is it supposed to reassure me when you tell me that it happens all the time? What if I'm unconscious or drugged and it's up to Bravest to remember what's supposed to happen? What if he's not there?
The only solution I can see is to ask for my own copy of every order, so I can give the official paperwork to the scheduling people and still have one copy for myself. Which is going to be a pain in the ass, but this is not happening to me again if I can prevent it.
In slightly better news, apparently I am the Very First Person to fill out a patient survey on line and send it back via email. So I told the doctor who told me this that they'd better think of a way for people to do that, because I am the edge of the next wave, and those who come after me will expect things to work like that. So, mission accomplished, perhaps!
The systems at Dana-Farber were not reassuring. When I went to check out from seeing the three doctors, the tests they had told me they were ordering were not in The System, and people had to be paged to confirm what I remembered.
And when I got down to the lab, two out of the three blood tests ordered were missing, and I had to be insistant, and at that point I lost it.
How is a person supposed to feel safe if the best cancer institute in Boston can lose a set of test orders twice in less than four hours? And is it supposed to reassure me when you tell me that it happens all the time? What if I'm unconscious or drugged and it's up to Bravest to remember what's supposed to happen? What if he's not there?
The only solution I can see is to ask for my own copy of every order, so I can give the official paperwork to the scheduling people and still have one copy for myself. Which is going to be a pain in the ass, but this is not happening to me again if I can prevent it.
In slightly better news, apparently I am the Very First Person to fill out a patient survey on line and send it back via email. So I told the doctor who told me this that they'd better think of a way for people to do that, because I am the edge of the next wave, and those who come after me will expect things to work like that. So, mission accomplished, perhaps!
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