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.
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Wednesday, August 31, 2011
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...
Sunday, August 28, 2011
Anxiety anxiety.
So compazine is an anti-psychotic. I'm not too worried about it, as it's anti-nausea propreties are also well known. It makes you hella sleepy, but that's all to the good, really.
No, the one I'm worried about, ironically, is the ativan. Also know as lorazepam, it doesn't really do anything for nausea. It makes you forget that you were nauseated,or that you were worries about it.
I have a bad history with such drugs. Back when I was young, poor, and a new mommy, a doctor gave me a similar drug to treat back spasms. (And probably also because he thought I was anxious. I was, but for entirely justifiable reasons. We will save the rant about not drugging people who are responding normally to bad situations for another time.)
It took two days on Valium for me to start talking about suicide, a development that surprised even me. It is an experience I'd very much like to not repeat, and thinking abut it is making me feel anxious and slightly nauseated.
Which is funny, in a sick way. I plan to talk to the doctors about it.
(Please note that I may be nauseated, but I hope never to be nauseous. If I am, pipe up and say something. Maybe I can take a breath mint or hide under the blankets or something.)
No, the one I'm worried about, ironically, is the ativan. Also know as lorazepam, it doesn't really do anything for nausea. It makes you forget that you were nauseated,or that you were worries about it.
I have a bad history with such drugs. Back when I was young, poor, and a new mommy, a doctor gave me a similar drug to treat back spasms. (And probably also because he thought I was anxious. I was, but for entirely justifiable reasons. We will save the rant about not drugging people who are responding normally to bad situations for another time.)
It took two days on Valium for me to start talking about suicide, a development that surprised even me. It is an experience I'd very much like to not repeat, and thinking abut it is making me feel anxious and slightly nauseated.
Which is funny, in a sick way. I plan to talk to the doctors about it.
(Please note that I may be nauseated, but I hope never to be nauseous. If I am, pipe up and say something. Maybe I can take a breath mint or hide under the blankets or something.)
Tuesday, August 23, 2011
And now for some Science!
Today we went in to see the surgeon's Nurse Practitioner. We were also supposed to see the surgeon, but our 11:30 AM appointment didn't happen until 1:10 PM, by which time the surgeon was already slicing and dicing over at the hospital.
The NP did check out the embroidery, and is very pleased with how fast I'm healing. She then reviewed the pathology report with me in detail, and gave me my very own copy. It's a little weird reading about the various shavings and slicing, but whatever.
Did you know that the scientific name for the type of cancer I had is the same as the name for a pimple? Neither did I! That name is comedo. On your face, a blackhead is an "open comedo" and a whitehead is a "closed comedo". In the breast, a comedo is a center of dead cells surrounded by a hungrily expanding and wildly proliferating set of cancerous cells. If they are at the surface, comedo cancers can be "squeezed". Yes, just like your momma told you not to do. (It doesn't make them go away, though.)
They are also a lot more aggressive than other sorts of cancers. Mine was very, very different from normal breast tissue, and was really growing very fast (lots of nuclei). So glad that Lump is gone!
The NP said not to worry about the little bits in the lymph vessels. If there's anything at all (and chances are good that there isn't) left behind by the surgery, the radiation and chemo will clear it. But it makes it even more clear as to why I need all this heavy-dutypoison medicine.
(And they not only didn't have my medication list right, they didn't have the new medications the oncologist ordered on the list. I got a bit upset. The NP had the right list, thank goodness! and promised to make sure whateveritis is fixed before the 12th. If they don't get it right, I will refuse treatment, because I have to be sure that the people mixing the chemo know what else I'm taking. In fact, I may call the oncologist's office the week prior, just to be sure.)
Now then:
Today's extended wait was enlivened by a lady who moved from commenting on my knitting to a broad-ranging conversation that included a dig at immigrants! I jumped on that one tout de suite, but in a nice way, bringing in my great-grandparents, grandparents, and parents. She was relieved, I think, that I left her a graceful way to backtrack. Normally, I would be less polite, but the lady had to have a surprise mastectomy just a couple of weeks ago, so why point out that her doctor and mine rejoices in the last name of "Zabrinski-Calvillo"?
The NP did check out the embroidery, and is very pleased with how fast I'm healing. She then reviewed the pathology report with me in detail, and gave me my very own copy. It's a little weird reading about the various shavings and slicing, but whatever.
Did you know that the scientific name for the type of cancer I had is the same as the name for a pimple? Neither did I! That name is comedo. On your face, a blackhead is an "open comedo" and a whitehead is a "closed comedo". In the breast, a comedo is a center of dead cells surrounded by a hungrily expanding and wildly proliferating set of cancerous cells. If they are at the surface, comedo cancers can be "squeezed". Yes, just like your momma told you not to do. (It doesn't make them go away, though.)
They are also a lot more aggressive than other sorts of cancers. Mine was very, very different from normal breast tissue, and was really growing very fast (lots of nuclei). So glad that Lump is gone!
The NP said not to worry about the little bits in the lymph vessels. If there's anything at all (and chances are good that there isn't) left behind by the surgery, the radiation and chemo will clear it. But it makes it even more clear as to why I need all this heavy-duty
(And they not only didn't have my medication list right, they didn't have the new medications the oncologist ordered on the list. I got a bit upset. The NP had the right list, thank goodness! and promised to make sure whateveritis is fixed before the 12th. If they don't get it right, I will refuse treatment, because I have to be sure that the people mixing the chemo know what else I'm taking. In fact, I may call the oncologist's office the week prior, just to be sure.)
Now then:
- The chemo is AC (Adriamycin/Cytoxin). The A keeps cells from making or repairing DNA. It really is a poison; fortunately, since cancer cells are madly dividing, it hits them harder than the more leisurely normal cells. The C keeps cancer cells from replicating. So, they can't reproduce and they can't repair themselves and they die. Hopefully, before anything else important dies, like my heart muscle or all my T cells.
- I will be getting Neulasta the day after surgery. This will help my blood recover its ability to fight infection sooner, so I can go through the speeded-up regimen.
- The backbone of the anti-nausea regimen is three drugs: emend, aloxi, and decadron, mostly administered with the chemo. I will also have compazine and ativan as needed, and Zofran if the nausea lasts more than three days. I have been instructed to take an ativan before coming in for my first treatment.
Today's extended wait was enlivened by a lady who moved from commenting on my knitting to a broad-ranging conversation that included a dig at immigrants! I jumped on that one tout de suite, but in a nice way, bringing in my great-grandparents, grandparents, and parents. She was relieved, I think, that I left her a graceful way to backtrack. Normally, I would be less polite, but the lady had to have a surprise mastectomy just a couple of weeks ago, so why point out that her doctor and mine rejoices in the last name of "Zabrinski-Calvillo"?
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.
Sunday, August 21, 2011
And another waiting cycle ensues
I have an appointment with the oncologist Monday to discuss when to start chemo, what sort to use, and what the schedule will be. And I have an appointment Tuesday with the surgeon so she can admire her embroidery. :)
Also, a dentist appointment the following Monday so I can get one filling taken care of and go into chemo without any mouth issues.
Church today was rather strange. I got into a long discussion with a woman whose niece (only 32!) is dealing with really bad breast cancer, much worse than what's happening to me. She (the niece) apparently has a rare anomaly on the BRCA1 gene, and my even-Christian (Blessed Julian of Norwich's name for fellow-believers) was trying to extrapolate from my experience to her niece's. Despite my repeated warnings. She didn't want to question her sister (the young lady's mother), who is having a very difficult time with things, or her niece (who sounds, from her description, as though she wouldn't mind at all, but I forebore to say so because it's not my family). So, she asked me. This got us into the link between various cancers and ethnic background, and why X was happening to me while Y was happening to her niece.
It's really amazing how individualized cancer therapy has gotten.
Other than that, there's only a lot of trying to live while waiting to report. I will let y'all know as soon as I can about what the chemo schedule looks like.
In return, may I ask one favor? All sorts of chemo have side effects, and I'm sure my doctors will tell me what I need to know about them. Please, therefore, do not post links for me to read about this type or that type. I am staying away from the Internet as much as I can while dealing with this thing, because I am NOT a scientist or a doctor, and I DON'T have a way to filter claims and counter-claims, and a lot of the stuff out there is just scary and depressing. I find I scare rather easily (see previous lymphadema episode), so it's best to just try and understand what the docs are telling me.
Also, a dentist appointment the following Monday so I can get one filling taken care of and go into chemo without any mouth issues.
Church today was rather strange. I got into a long discussion with a woman whose niece (only 32!) is dealing with really bad breast cancer, much worse than what's happening to me. She (the niece) apparently has a rare anomaly on the BRCA1 gene, and my even-Christian (Blessed Julian of Norwich's name for fellow-believers) was trying to extrapolate from my experience to her niece's. Despite my repeated warnings. She didn't want to question her sister (the young lady's mother), who is having a very difficult time with things, or her niece (who sounds, from her description, as though she wouldn't mind at all, but I forebore to say so because it's not my family). So, she asked me. This got us into the link between various cancers and ethnic background, and why X was happening to me while Y was happening to her niece.
It's really amazing how individualized cancer therapy has gotten.
Other than that, there's only a lot of trying to live while waiting to report. I will let y'all know as soon as I can about what the chemo schedule looks like.
In return, may I ask one favor? All sorts of chemo have side effects, and I'm sure my doctors will tell me what I need to know about them. Please, therefore, do not post links for me to read about this type or that type. I am staying away from the Internet as much as I can while dealing with this thing, because I am NOT a scientist or a doctor, and I DON'T have a way to filter claims and counter-claims, and a lot of the stuff out there is just scary and depressing. I find I scare rather easily (see previous lymphadema episode), so it's best to just try and understand what the docs are telling me.
Saturday, August 20, 2011
And just to remind me (and you) that it's not all about me...
While I'm getting all this good news and merrily preparing for chemo, a good friend -- someone who, with his wife, opened his home to me on a very bad weekend, who witnessed my son's baptism, and who was a leader in our church's moving to acceptance of GLBT people, is dying of pancreatic cancer. This, after more than 10 years of battling a progressive brain disease similar (but not the same as) Alzheimer's, which hit him at a very young age.
The end for him is very close.
Those of you who do the praying thing, please pray for John, Peggi, and their children Morgan and Colby.
The end for him is very close.
Those of you who do the praying thing, please pray for John, Peggi, and their children Morgan and Colby.
Thursday, August 18, 2011
Bless the Lord, oh my soul,
And forget not all of his benefits.
The surgeon called. The margins are clean, the signal nodes were clear; I am done with surgery. Any treatment after this is on the off-chance that a cell or two slipped by, and to teach that area of my breast to behave itself and not go wildly multiplying.
Time from biopsy to post-surgical phone call -- two months and one day.
The scars are about two inches long apiece, and look like this: /
/
\
\
And if I was living in another time or another place, I might not even know yet that I had cancer.
Praise Him with the sounding cymbals!
The surgeon called. The margins are clean, the signal nodes were clear; I am done with surgery. Any treatment after this is on the off-chance that a cell or two slipped by, and to teach that area of my breast to behave itself and not go wildly multiplying.
Time from biopsy to post-surgical phone call -- two months and one day.
The scars are about two inches long apiece, and look like this: /
/
\
\
And if I was living in another time or another place, I might not even know yet that I had cancer.
Praise Him with the sounding cymbals!
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.)
Monday, August 15, 2011
Time divides...
Did you ever notice that when something big is coming up in your life, time seems to divide into the known Before and the unknown After? A priest friend who reads this blog says that in this sort of circumstance she gets "very eschatological". And cleans!
I have washed, dried, folded, and put away every stitch of clothing I own, except for what I'm wearing now and tomorrow. If I'm destined never to return, at least my undies are clean.
(Note: I thought I had published this one on 8/8, but apparently not.)
I have washed, dried, folded, and put away every stitch of clothing I own, except for what I'm wearing now and tomorrow. If I'm destined never to return, at least my undies are clean.
(Note: I thought I had published this one on 8/8, but apparently not.)
Sunday, August 14, 2011
Breathless
Yesterday, I started having trouble breathing.
It wasn't bad, at first. Just a feeling like a deep breath was needed more and more often. But it got worse as the day went on, and started to feel as though ecven a deep breath somehow wasn't getting me any air.
So, I used my "rescue" inhaler, and that helped a bit. And I took a nap, and that seemed to help as well.
And then I started making a cold soup for supper, and things got worse and worse. So, I used the inhaler again (this was most unusual, since I might normally use the thing once every six months, if that). And... no relief.
So, I got out the post-op instructions, and they said to call 911 if I experienced trouble breathing.
Which, after trying to contact the surgeon or her surrogate for forty minutes, to no avail, we eventually did, and I got my first ride in an ambulance! (The oxygen was a big help.)
My sister joined us at the Brigham & Women's emergency room, and blood was drawn (to make sure my kidney functions were OK), and then I had a chest XRAY and a CT scan. Results: No blood clot in the lungs, thank goodness; probably an asthma attack. Plus, I'm a bit low on potassium.
Which made me feel like an ass, and means that we're going to have to pay the whole bill for the ambulance ride.
However, when we walked in the door after five hours(major thanks again to my sister, who joined us in the ER and to her husband who brought us home), I felt my chest tighten again. So the hunt was on for the triggering agent.
Further conclusion: Any of y'all feel inclined to send me flowers, please make sure they do not include lilies. Apparently, even the ones that are nigh-scentless can send me into crisis mode, if enough of them are open.
Today, I'm fine. Doing the grocery shopping kind of wore me out, but only a little more than usual.
Oh, and the new haircut isn't half bad. I look even more as though I bat for the home team, as it were, but people have been making that assumption about me for years now, and I'm starting to consider it an honor.
It wasn't bad, at first. Just a feeling like a deep breath was needed more and more often. But it got worse as the day went on, and started to feel as though ecven a deep breath somehow wasn't getting me any air.
So, I used my "rescue" inhaler, and that helped a bit. And I took a nap, and that seemed to help as well.
And then I started making a cold soup for supper, and things got worse and worse. So, I used the inhaler again (this was most unusual, since I might normally use the thing once every six months, if that). And... no relief.
So, I got out the post-op instructions, and they said to call 911 if I experienced trouble breathing.
Which, after trying to contact the surgeon or her surrogate for forty minutes, to no avail, we eventually did, and I got my first ride in an ambulance! (The oxygen was a big help.)
My sister joined us at the Brigham & Women's emergency room, and blood was drawn (to make sure my kidney functions were OK), and then I had a chest XRAY and a CT scan. Results: No blood clot in the lungs, thank goodness; probably an asthma attack. Plus, I'm a bit low on potassium.
Which made me feel like an ass, and means that we're going to have to pay the whole bill for the ambulance ride.
However, when we walked in the door after five hours(major thanks again to my sister, who joined us in the ER and to her husband who brought us home), I felt my chest tighten again. So the hunt was on for the triggering agent.
Further conclusion: Any of y'all feel inclined to send me flowers, please make sure they do not include lilies. Apparently, even the ones that are nigh-scentless can send me into crisis mode, if enough of them are open.
Today, I'm fine. Doing the grocery shopping kind of wore me out, but only a little more than usual.
Oh, and the new haircut isn't half bad. I look even more as though I bat for the home team, as it were, but people have been making that assumption about me for years now, and I'm starting to consider it an honor.
Friday, August 12, 2011
An image I won't forget.
When they wheeled me into the OR I naturally took a look around. There were people burbling about everywhere, two clocks on the wall(one with the time, one to time the surgery), a lot of impressive white machinery around the very narrow operating table, and a large black screen on the wall.
The anesthesiologist began running through the Checklist (this is Atul Gwande's hospital and they use it rigorously), and I replied "That is correct!" to my name, birthdate, and procedure description. Then the surgeon breezed up and held a geiger-counter to my left armpit, and I heard my signal lymph node signalling. "Good," she said, "No blue dye needed."
And then she swept over to the large black screen, waved her hand (no unsanitary buttons here!) and the screen came alive with various images of my breast.
And she froze before them in absolute concentration.
It was tremendously reassuring to have that be the last thing I really saw other than the oxygen mask.
The anesthesiologist began running through the Checklist (this is Atul Gwande's hospital and they use it rigorously), and I replied "That is correct!" to my name, birthdate, and procedure description. Then the surgeon breezed up and held a geiger-counter to my left armpit, and I heard my signal lymph node signalling. "Good," she said, "No blue dye needed."
And then she swept over to the large black screen, waved her hand (no unsanitary buttons here!) and the screen came alive with various images of my breast.
And she froze before them in absolute concentration.
It was tremendously reassuring to have that be the last thing I really saw other than the oxygen mask.
Thursday, August 11, 2011
Recovery
I'm doing OK. Things hurt, and my neck is stiff from sleeping in a position I'm not used to. There's no fever, and the sites don't look too red or feel hot (some spectacular bruising, though). But I am moving around quite well, and starting to go a little stir-crazy, which is a good sign. Tomorrow I will put on ordinary clothes (I've been lounging around in mumus) and we will take a short drive and do some errands, just to gauge how tired I get.
Recovery also being a time for reflection, I should -- in the interest of honest reporting, as Bravest is wont to say -- relate that I know that a lot of my tears and flapdoodle before the surgery was due to the pressure of knowing that I have cancer. Even with the tumor out, I will still need a lot of patience and support from my friends and family to get through the next four to six months.
But I am glad to be feeling that mentally, at least, I am back from the surgery. It took about 36 hours for the last of the "logy" feeling to wear away.
Next up: haircut! I am having my hairdresser cut most of my hair off on Saturday, so there won't be so much of it to clog up the shower once the chemo starts in September.
Recovery also being a time for reflection, I should -- in the interest of honest reporting, as Bravest is wont to say -- relate that I know that a lot of my tears and flapdoodle before the surgery was due to the pressure of knowing that I have cancer. Even with the tumor out, I will still need a lot of patience and support from my friends and family to get through the next four to six months.
But I am glad to be feeling that mentally, at least, I am back from the surgery. It took about 36 hours for the last of the "logy" feeling to wear away.
Next up: haircut! I am having my hairdresser cut most of my hair off on Saturday, so there won't be so much of it to clog up the shower once the chemo starts in September.
Wednesday, August 10, 2011
Emergency keyboard is enabled!
So, I have absolutely NO griping to do about any aspect of the whole experience. We got there on time, and everyone in the whole hospital that I encountered did exactly what they were supposed to do. I had a lot of nausea from the general anesthesia and the anti-nausea drug they gave me sent me right to sleep again, so we were later getting back than I'd thought we'd be. but that was the only thing that could be described as a hitch.
I give the credit to 1) a very good hospital/surgeon/staff, and 2) to prayer. Because a lot of things could have gone wrong, but none of them did.
Also, my surgeon is a BABE. She showed up at the pre-op in a white linen suit, heels, a green necklace, a sparkly pin, and her long blonde hair in a carefully slightly untidy bun. Everyone there (save Bravest) let out an admiring sigh. Then she changed into scrubs, and was back in her full vestments for post-op. Scary!
I have some pain, but it's really not so bad. Tylenol and some ice packs have been all I needed during the day.
We should hear in a about ten days regarding the findings. Then I will know if I need more surgery, or if I can move on to chemo.
I give the credit to 1) a very good hospital/surgeon/staff, and 2) to prayer. Because a lot of things could have gone wrong, but none of them did.
Also, my surgeon is a BABE. She showed up at the pre-op in a white linen suit, heels, a green necklace, a sparkly pin, and her long blonde hair in a carefully slightly untidy bun. Everyone there (save Bravest) let out an admiring sigh. Then she changed into scrubs, and was back in her full vestments for post-op. Scary!
I have some pain, but it's really not so bad. Tylenol and some ice packs have been all I needed during the day.
We should hear in a about ten days regarding the findings. Then I will know if I need more surgery, or if I can move on to chemo.
Tuesday, August 9, 2011
Sugery today.
The computer keyboard is dead, so this is from my teeny Droid keyboard. All is welll, and e'll hve results in a week or two.
No more deep thoughts today.
No more deep thoughts today.
Saturday, August 6, 2011
A reassuring note
Today was a much better day -- full of swimming in the broad Atlantic, lolling on the beach, and eating yummy things with pleasant people.
I love ocean swimming, particularly in surf. There's some point in being fat when you're in the water; you don't get cold as easily, and you're marvelously buoyant. I spent nearly an hour without touching my feet to the bottom, and emerged feeling just grand.
I love ocean swimming, particularly in surf. There's some point in being fat when you're in the water; you don't get cold as easily, and you're marvelously buoyant. I spent nearly an hour without touching my feet to the bottom, and emerged feeling just grand.
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.
Wednesday, August 3, 2011
Medical Time
Today (yesterday, really) I had appointments at 9:30 and 10:30 for pre-operative stuffs. All the morning things were done with expedition, we left the house with 50 minutes to make it to Brigham & Women's, and were at the first office we needed to visit with five minutes to spare.
Whereupon we entered Medical Time.
In Medical Time, all times are later. Since I am trying to be efficient and effective, I had lots of documents ready to hand. This disconcerted everyone we encountered. We actually made it from the consent form review over to the pre-operative center with 20 minutes to spare, which was good, as it turns out the hospital's information about me was 20+ years old. So I went over to Registration and fixed that, which meant I was right on time.
Then we waited half an hour.
I then handed the nurse practitioner my medical history, my pre-surgery clearance report from my primary care (with all the meds on it), my Healthcare Proxy, and the consent form from my first visit.
Turns out the EKG was bad, so they had to redo it. But! In a true triumph of efficiency, the pre-operative center outfits their consulting rooms with lab chairs, and a lab tech with both an EKG machine and a basket of blood-drawing supplies roams the halls. Everything is done in the room, while the nurse practitioner is continuing to work on getting all your meds into The System.
(Oh, funny moment. She asked what my blood pressure usually was, and I told her, and then said, "If you're going to take it now, could we do the urine sample first?" "Oh no, we don't need a sample, I'm so sorry, I know the form letter says we do, go right down the hall and take your first left, it's on the left." Result: BP was 116 / 64 with a pulse of 69.)
I also found out the results of my echocardiogram. I have the heart of a workhorse, surprise, surprise.
And even with me being hyper-prepared and all this efficiency, we still weren't out of there until 12:30. So, we got some lunch, and then schlepped UP one flight and through three different bridges between buildings and past two incorrect elevator banks to the correct ones, then DOWN three floors to the "Friends Center," where they offer cancer-related goods and services.
Because it turns out the support bras I bought on Saturday aren't the "approved" support bras (and why no one told me this is a subject for further inquiry), which are provided through insurance (for one bra) and free for the second because everyone wants to be nice to women with breast cancer. (I am not really happy about this. I prefer to be asked about what I need rather than have someone gratuitously assume I can't pay for a bra.) Also included was a nice canvas bag (purple, thank goodness!), a humilating pink Boston Red Sox baseball cap (you should hear what our local sports radio says about people with pink caps), and a whole bunch of very sobering literature. What to eat when you have advanced cancer and so on.
We finally got home at 2:45. So much for morning appointments! But I cannot complain, as every question I had was answered and quite a few I hadn't thought to ask as well. Still, it doesn't bode well for the day of surgery.
Oh, and I have to make two phone calls Monday, one to the surgeon and one to the hospital, both to confirm that the surgery is, in fact, happening.
I go back on Friday to have the volume of my arms measured, in case of lymphedema (warning, very scary pictures). Oddly, this is done at the Friends Center instead of by the doctors, even though they prescribe it and want it done. Apparently, because treatment is massage therapy which is done at the Friends Center, it doesn't count as "medical". With any luck, my 10 AM appointment will be over before dark.
Whereupon we entered Medical Time.
In Medical Time, all times are later. Since I am trying to be efficient and effective, I had lots of documents ready to hand. This disconcerted everyone we encountered. We actually made it from the consent form review over to the pre-operative center with 20 minutes to spare, which was good, as it turns out the hospital's information about me was 20+ years old. So I went over to Registration and fixed that, which meant I was right on time.
Then we waited half an hour.
I then handed the nurse practitioner my medical history, my pre-surgery clearance report from my primary care (with all the meds on it), my Healthcare Proxy, and the consent form from my first visit.
Turns out the EKG was bad, so they had to redo it. But! In a true triumph of efficiency, the pre-operative center outfits their consulting rooms with lab chairs, and a lab tech with both an EKG machine and a basket of blood-drawing supplies roams the halls. Everything is done in the room, while the nurse practitioner is continuing to work on getting all your meds into The System.
(Oh, funny moment. She asked what my blood pressure usually was, and I told her, and then said, "If you're going to take it now, could we do the urine sample first?" "Oh no, we don't need a sample, I'm so sorry, I know the form letter says we do, go right down the hall and take your first left, it's on the left." Result: BP was 116 / 64 with a pulse of 69.)
I also found out the results of my echocardiogram. I have the heart of a workhorse, surprise, surprise.
And even with me being hyper-prepared and all this efficiency, we still weren't out of there until 12:30. So, we got some lunch, and then schlepped UP one flight and through three different bridges between buildings and past two incorrect elevator banks to the correct ones, then DOWN three floors to the "Friends Center," where they offer cancer-related goods and services.
Because it turns out the support bras I bought on Saturday aren't the "approved" support bras (and why no one told me this is a subject for further inquiry), which are provided through insurance (for one bra) and free for the second because everyone wants to be nice to women with breast cancer. (I am not really happy about this. I prefer to be asked about what I need rather than have someone gratuitously assume I can't pay for a bra.) Also included was a nice canvas bag (purple, thank goodness!), a humilating pink Boston Red Sox baseball cap (you should hear what our local sports radio says about people with pink caps), and a whole bunch of very sobering literature. What to eat when you have advanced cancer and so on.
We finally got home at 2:45. So much for morning appointments! But I cannot complain, as every question I had was answered and quite a few I hadn't thought to ask as well. Still, it doesn't bode well for the day of surgery.
Oh, and I have to make two phone calls Monday, one to the surgeon and one to the hospital, both to confirm that the surgery is, in fact, happening.
I go back on Friday to have the volume of my arms measured, in case of lymphedema (warning, very scary pictures). Oddly, this is done at the Friends Center instead of by the doctors, even though they prescribe it and want it done. Apparently, because treatment is massage therapy which is done at the Friends Center, it doesn't count as "medical". With any luck, my 10 AM appointment will be over before dark.
Tuesday, August 2, 2011
OK, this is annoying
I wanted to post some pictures here to show all my wonderful readers how my hair looks now. But I can't. Because Blogspot won't read the URL of pictures posted to the Livejournal Scrapbook, even if they are public. No, I have to use Picassa, or add them to the blog in some other way, or get them into a different URL.
Sorry, not maintaining two separate Web picture files. You-all will just have to meander over here.
And while you're in the neighborhood, click on the tag (list on the right) called "absurd locutions." You will instantly feel better about your own sanity and writing ability.
Sorry, not maintaining two separate Web picture files. You-all will just have to meander over here.
And while you're in the neighborhood, click on the tag (list on the right) called "absurd locutions." You will instantly feel better about your own sanity and writing ability.
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