Monday, September 15, 2008
"2 young"
Those of you who use RSS feeds to follow my blog, please click out to the actual blog.
First, you will see happy new Fall graphics.
Next, I'd like to ask you to scroll down a bit and peruse the "2 young" menu on the right side of the page. These are some of the women I've encountered on the Young Survival Coalition bulletin boards. It is by no means a comprehensive list of all the women there who have their own blogs, web pages, MySpace pages, Caring Bridge pages, Facebook pages, etc. But I quail at adding more names because it's a pretty long list, even here.
Two of the pages in the list now belong to women who have died from their breast cancer. "Jayme" would have been 36 at the end of this past July, but she didn't make it to her birthday. "Courtney - bccourtney" died last night at the age of 23. She was a dancer; she was diagnosed three years ago and the disease ate her body away.
I don't really know what to do with the links, because they won't be updated. Do I just whittle the list down, or do I leave the names, knowing that nothing new will be posted; no answers will be listed on their personal pages about where they are and what they are doing?
Sorry for the downer. It's just vitally important for people to know that young women do get breast cancer, and that young women also die from it. "Early detection" and "prevention" are worthy concepts, but insufficient. Is "Cure" too much to hope for? I hope for myself and for the women listed in the right margin--and for all women dealing with breast cancer who aren't in my feeble list--that it isn't.
I guess if you are bummed now, try looking at the happy Fall graphics again.
Love,
Janet
First, you will see happy new Fall graphics.
Next, I'd like to ask you to scroll down a bit and peruse the "2 young" menu on the right side of the page. These are some of the women I've encountered on the Young Survival Coalition bulletin boards. It is by no means a comprehensive list of all the women there who have their own blogs, web pages, MySpace pages, Caring Bridge pages, Facebook pages, etc. But I quail at adding more names because it's a pretty long list, even here.
Two of the pages in the list now belong to women who have died from their breast cancer. "Jayme" would have been 36 at the end of this past July, but she didn't make it to her birthday. "Courtney - bccourtney" died last night at the age of 23. She was a dancer; she was diagnosed three years ago and the disease ate her body away.
I don't really know what to do with the links, because they won't be updated. Do I just whittle the list down, or do I leave the names, knowing that nothing new will be posted; no answers will be listed on their personal pages about where they are and what they are doing?
Sorry for the downer. It's just vitally important for people to know that young women do get breast cancer, and that young women also die from it. "Early detection" and "prevention" are worthy concepts, but insufficient. Is "Cure" too much to hope for? I hope for myself and for the women listed in the right margin--and for all women dealing with breast cancer who aren't in my feeble list--that it isn't.
I guess if you are bummed now, try looking at the happy Fall graphics again.
Love,
Janet
Labels: awareness, cure, metastasis, prevention, YSC
Sunday, June 17, 2007
Don't Even TRY to Tell Me
Warning: this is a long, rambling rant. It does not contain sufficient citations/annotations and is somewhat repetitive.
"People who get DCIS are lucky."
Read my archive and then tell me how "lucky" people who get DCIS are. I heard this from my doctors, and I've read it on cancer survivor bulletin boards. People assume DCIS involves less treatment than other types of breast cancer so it must be "easier." I know of people who had their cancer staged higher than mine who had less initial treatment, and probably will not recur--some of whom express envy of people who were staged with DCIS.
One of my bulletin board compatriots, a woman who has metastatic disease, also had DCIS and now has confirmed brain mets.
The tiniest cancer cell is as deadly as any other mass of cancer cells.
"CMF chemo is 'light' and therefore easy."
I felt like I had the flu for six months and gained permanent aversions to certain smells. I can never smell baby shampoo without gagging because my oncology nurse suggested that baby shampoo would help keep my hair from falling out.
Just because I only developed a bald spot and didn't lose all my hair did NOT mean I felt swell and dandy. Having the flu sucks. Having flu symptoms as part of an effort to make you "better" doesn't make the symptoms more fun.
"If you don't have a 'family history' of breast cancer, your risk is lower."
Most people who are diagnosed with breast cancer have no family history. Having a family history can raise an individual's risk--and may be an indicator that there is a genetic component--but that's a completely different kind of statistic and doesn't apply to the population as a whole. Yes, screening of people with a family history is extremely important, but so is screening the majority of the population who will be diagnosed. I've been told many times it's better to catch it "early" (see my remarks about DCIS above), so why are doctors not more interested in catching it early?
"It's not worth screening younger women because of all the 'false positives.' "
I was diagnosed at age 30 and had no "history" of breast cancer that I knew of. My mother, my grandmother never had it; I have no sisters. If I had waited until the appropriate age to have a screening mammogram--and if my family care practice hadn't been on the ball enough to suggest a mammogram to investigate my lump (which, freakishly, turned out to be harmless, although there was cancer there), I'd still be waiting for my screening mammogram.
When I was first diagnosed, I was advised to get a copy of Dr. Susan Love's Breast Book. It is very large and makes an excellent doorstop. She explains the anatomy of the breast as well as anyone can, but this book did not help me because I had doctors who were able to explain things as least as clearly and in fewer words. While I was going through treatment, I encountered an article she wrote (or was interviewed for...I'm too angry and lazy to go look up the citation) in Glamour Magazine wherein she commented that we make too big a deal out of cancer and that many young women are unnecessarily frightened and undergo unnecessary surgery due to a rash breast cancer diagnosis.
Her entire thesis is that those people who might experience a "false positive" are statistically more important than I am.
Well f*ck that.
Recently guidelines for breast MRIs were published that I had hoped would make it easier for younger women to be screened for breast cancer (the difficulty being that young breast tissue tends to be dense and mammograms don't work very well on dense breasts), but the guidelines still state that MRIs are really only appropriate for people with "an increased risk" of breast cancer.
Do you know who is NOT at "increased risk"? PEOPLE WHO HAVE ALREADY HAD BREAST CANCER.
?!
People who are under the age of 35 who have "no family history" but who have an unexplained lump are not at "increased risk." This whole MRI thing would have had me still waiting for my baseline screening.
I don't read Dr. Susan Love's remarks anymore, and I get very angry when I read things of the same flavor...Anyone who suggests to me that statistics are a valid reason to let me go untreated/undiagnosed is not somebody I care to listen to.
"In follow up care, we shouldn't be too quick to run scans and tests."
This is largely to keep costs down, I believe. Scans and scanning equipment are expensive. "False positives" are expensive. Insurance is expensive. It is not good to cause needless emotional trauma to fragile, fragile women.
You know what else is expensive and traumatizing? Spending a damn month in the hospital with a mangled pelvis because it wasn't worth running expensive scans on a "lucky" woman who had DCIS, did "light chemo" was "cured" and has no "family history." I would be very interested to know if anyone has ever calculated the relative cost of treating someone who was not screened early enough to catch a disease before it got really ugly versus the cost of doing a scan that finds what it is looking for so the patient can be treated appropriately. I know my treatments have not been cheap. How much money could have been saved by doing a bone scan months before I had all kinds of other procedures which were unable to verify why I was having hip pain?
"Stage IV people should be treated if they are symptomatic, not before. We shouldn't go looking for disease in remote parts of the body."
I've heard that by the time bone mets are painful, they are very advanced. What's wrong with preventative medicine? Doesn't anybody study whether preventative medicine is cheaper in the long run than treating advanced crises? Wouldn't therapies that prevent bone mets reduce costs for everyone later along the line?
I also have recently read some articles debating the merits of doing routine brain scans on people with stage IV cancer. The current thinking (and I believe my doctor feels this way, too) is that in treating advanced disease, one treats the symptoms and doesn't go looking for trouble. In other words, my doctor probably will not check me for brain mets unless I start having severe neurological symptoms. I did have a brain scan when I was going through my stint of uncontrollable vomiting, but haven't had one since.
I will not have targeted therapy of my liver--and instead will continue systemic treatment--because I feel "fine."
The woman I referred to in the beginning of this post, who was also feeling "fine" until just a day or so ago has just discovered that she has some massive lesions in her brain. She discovered this by undergoing a terrifying seizure, during which she was conscious and could hear her own labored breathing--which she describes as sounding like that of her dying grandmother.
I wonder if I am becoming too complacent with my own treatment.
Maybe it's time to demand some scans. I have to do my part to drive up medical costs for everyone else to save my own, needless ass.
"People who get DCIS are lucky."
Read my archive and then tell me how "lucky" people who get DCIS are. I heard this from my doctors, and I've read it on cancer survivor bulletin boards. People assume DCIS involves less treatment than other types of breast cancer so it must be "easier." I know of people who had their cancer staged higher than mine who had less initial treatment, and probably will not recur--some of whom express envy of people who were staged with DCIS.
One of my bulletin board compatriots, a woman who has metastatic disease, also had DCIS and now has confirmed brain mets.
The tiniest cancer cell is as deadly as any other mass of cancer cells.
"CMF chemo is 'light' and therefore easy."
I felt like I had the flu for six months and gained permanent aversions to certain smells. I can never smell baby shampoo without gagging because my oncology nurse suggested that baby shampoo would help keep my hair from falling out.
Just because I only developed a bald spot and didn't lose all my hair did NOT mean I felt swell and dandy. Having the flu sucks. Having flu symptoms as part of an effort to make you "better" doesn't make the symptoms more fun.
"If you don't have a 'family history' of breast cancer, your risk is lower."
Most people who are diagnosed with breast cancer have no family history. Having a family history can raise an individual's risk--and may be an indicator that there is a genetic component--but that's a completely different kind of statistic and doesn't apply to the population as a whole. Yes, screening of people with a family history is extremely important, but so is screening the majority of the population who will be diagnosed. I've been told many times it's better to catch it "early" (see my remarks about DCIS above), so why are doctors not more interested in catching it early?
"It's not worth screening younger women because of all the 'false positives.' "
I was diagnosed at age 30 and had no "history" of breast cancer that I knew of. My mother, my grandmother never had it; I have no sisters. If I had waited until the appropriate age to have a screening mammogram--and if my family care practice hadn't been on the ball enough to suggest a mammogram to investigate my lump (which, freakishly, turned out to be harmless, although there was cancer there), I'd still be waiting for my screening mammogram.
When I was first diagnosed, I was advised to get a copy of Dr. Susan Love's Breast Book. It is very large and makes an excellent doorstop. She explains the anatomy of the breast as well as anyone can, but this book did not help me because I had doctors who were able to explain things as least as clearly and in fewer words. While I was going through treatment, I encountered an article she wrote (or was interviewed for...I'm too angry and lazy to go look up the citation) in Glamour Magazine wherein she commented that we make too big a deal out of cancer and that many young women are unnecessarily frightened and undergo unnecessary surgery due to a rash breast cancer diagnosis.
Her entire thesis is that those people who might experience a "false positive" are statistically more important than I am.
Well f*ck that.
Recently guidelines for breast MRIs were published that I had hoped would make it easier for younger women to be screened for breast cancer (the difficulty being that young breast tissue tends to be dense and mammograms don't work very well on dense breasts), but the guidelines still state that MRIs are really only appropriate for people with "an increased risk" of breast cancer.
Do you know who is NOT at "increased risk"? PEOPLE WHO HAVE ALREADY HAD BREAST CANCER.
?!
People who are under the age of 35 who have "no family history" but who have an unexplained lump are not at "increased risk." This whole MRI thing would have had me still waiting for my baseline screening.
I don't read Dr. Susan Love's remarks anymore, and I get very angry when I read things of the same flavor...Anyone who suggests to me that statistics are a valid reason to let me go untreated/undiagnosed is not somebody I care to listen to.
"In follow up care, we shouldn't be too quick to run scans and tests."
This is largely to keep costs down, I believe. Scans and scanning equipment are expensive. "False positives" are expensive. Insurance is expensive. It is not good to cause needless emotional trauma to fragile, fragile women.
You know what else is expensive and traumatizing? Spending a damn month in the hospital with a mangled pelvis because it wasn't worth running expensive scans on a "lucky" woman who had DCIS, did "light chemo" was "cured" and has no "family history." I would be very interested to know if anyone has ever calculated the relative cost of treating someone who was not screened early enough to catch a disease before it got really ugly versus the cost of doing a scan that finds what it is looking for so the patient can be treated appropriately. I know my treatments have not been cheap. How much money could have been saved by doing a bone scan months before I had all kinds of other procedures which were unable to verify why I was having hip pain?
"Stage IV people should be treated if they are symptomatic, not before. We shouldn't go looking for disease in remote parts of the body."
I've heard that by the time bone mets are painful, they are very advanced. What's wrong with preventative medicine? Doesn't anybody study whether preventative medicine is cheaper in the long run than treating advanced crises? Wouldn't therapies that prevent bone mets reduce costs for everyone later along the line?
I also have recently read some articles debating the merits of doing routine brain scans on people with stage IV cancer. The current thinking (and I believe my doctor feels this way, too) is that in treating advanced disease, one treats the symptoms and doesn't go looking for trouble. In other words, my doctor probably will not check me for brain mets unless I start having severe neurological symptoms. I did have a brain scan when I was going through my stint of uncontrollable vomiting, but haven't had one since.
I will not have targeted therapy of my liver--and instead will continue systemic treatment--because I feel "fine."
The woman I referred to in the beginning of this post, who was also feeling "fine" until just a day or so ago has just discovered that she has some massive lesions in her brain. She discovered this by undergoing a terrifying seizure, during which she was conscious and could hear her own labored breathing--which she describes as sounding like that of her dying grandmother.
I wonder if I am becoming too complacent with my own treatment.
Maybe it's time to demand some scans. I have to do my part to drive up medical costs for everyone else to save my own, needless ass.
Labels: bone scan, brain scan, DCIS, metastasis, MRI, prevention
Thursday, March 22, 2007
Elizabeth Edwards
Elizabeth Edwards has been diagnosed with metastatic disease.
I don't know if she has already gone through the crushing wailing despair bit yet, or if she has had more prompt access to therapy than I did, but her attitude seems remarkably upbeat and positive. Let me stress that she has every right to be upbeat and positive (she has been diagnosed with a lesion on one rib, which is treatable but not curable): bone mets are very controllable and it is possible to live with stable bone mets for years. It took me about a year to shake the feeling that doom was imminent; I am glad to see that she is forging ahead and not letting this control her life.
"You can go cower in the corner and hide or you can go out there and stand up for what you believe in," John Edwards said. "We have no intentions of cowering in the corner." John Edwards of course means that he is going to continue seeking nomination for the 2008 election despite his wife's condition, but however you feel about the man's political aspirations, he's got a point.
Upon receiving bad medical news, the very worst thing is to give up on what is important to you. If you decide to quit living your life, the disease has already won.
I don't know if she has already gone through the crushing wailing despair bit yet, or if she has had more prompt access to therapy than I did, but her attitude seems remarkably upbeat and positive. Let me stress that she has every right to be upbeat and positive (she has been diagnosed with a lesion on one rib, which is treatable but not curable): bone mets are very controllable and it is possible to live with stable bone mets for years. It took me about a year to shake the feeling that doom was imminent; I am glad to see that she is forging ahead and not letting this control her life.
"You can go cower in the corner and hide or you can go out there and stand up for what you believe in," John Edwards said. "We have no intentions of cowering in the corner." John Edwards of course means that he is going to continue seeking nomination for the 2008 election despite his wife's condition, but however you feel about the man's political aspirations, he's got a point.
Upon receiving bad medical news, the very worst thing is to give up on what is important to you. If you decide to quit living your life, the disease has already won.
Labels: Elizabeth Edwards, metastasis
Wednesday, February 07, 2007
Anniversary!
For a while I've been marking cancerversaries. November 5: my surgery date. November 3: second bone scan and confirmation of metastatic disease. December: hospital stay. I don't think I will be able to forget and keep from feeling unease when late fall rolls around again, but a new marker of passing time is coming up.
February 25 will be Brian and my first wedding anniversary. I confess that when we got married, I was not entirely convinced that I would be seeing an anniversary, but I am thrilled and relieved to comment that my notion of impending doom was silly and that we will be seeing many more anniversaries.
February 14 will be my first Valentine's Day as a married person. April 13 is the anniversary of our first date (at La Shish...Brian rode his Harley for optimum impact). Spring is considered to be a time of renewal and rebirth. Usually this is represented by bunnies, tulips, and Cadbury eggs. I represent it by throwing off the shackles of my wheelchair, walker, and Fentanyl patches, and by celebrating what is good instead of being mired in what's miserable.
February 25 will be Brian and my first wedding anniversary. I confess that when we got married, I was not entirely convinced that I would be seeing an anniversary, but I am thrilled and relieved to comment that my notion of impending doom was silly and that we will be seeing many more anniversaries.
February 14 will be my first Valentine's Day as a married person. April 13 is the anniversary of our first date (at La Shish...Brian rode his Harley for optimum impact). Spring is considered to be a time of renewal and rebirth. Usually this is represented by bunnies, tulips, and Cadbury eggs. I represent it by throwing off the shackles of my wheelchair, walker, and Fentanyl patches, and by celebrating what is good instead of being mired in what's miserable.
Labels: anniversary, bone scan, Brian, cancerversary, fentanyl, hospital, metastasis, motorcycle, surgery, walker, wedding, wheelchair
Tuesday, January 16, 2007
Ok, Break's Over: now where did I put that mandible?
It was nice while it lasted.
I was the first patient Dr. Hayes and Lita tried to treat with just Avastin and Zometa, in the hope that my disease is stable enough to treat without my having to undergo chemotherapy. As mentioned in a previous post, the blood test results from two weeks ago indicated that there could be some tumor activity: one of the markers remained the same, but the other blipped up.
So I went in for my bone scan and CT scan last week, which is always a joy. I was not able to eat during the day because of my evening scan, and by the time I got home I was ravenous and more than a little insane with low-blood-sugar-induced anger. I was angry about being stuck at the hospital with nothing to do for three and a half hours because I wouldn't have had time to get home and back. I was angry about not being able to eat. I was angry about the fact that barium even exists at all and that they can't inject the contrast dye into my port (Lita says now there's a new kind called a "superport" that they can use for injecting the dye...I may consider asking to get mine replaced). I was angry about slow traffic, at the person who honked at me for not turning quickly enough into the Wendy's parking lot, at the slowness of the drive-thru. I was angry at Brian for keeping me company while eating. I was once again angry at barium when it decided to go on its voyage to porcelain heaven--all at once. I was angry at pretty much anything it occurred to me to think of or notice.
I got my results today.
The Good News
My bones appear completely stable. There was no progression of disease in my hip/spine/ribs, and Lita is not at all worried about undue risk of fracture.
What a difference a year makes.
The Bad News
The bad news is that the disease in my liver does show progression, and as of today, both tumor markers were up (the one which had gotten down to 16-point-something is now about 200). I resumed the Abraxane today and have every expectation that those markers will go down again to near-normal levels. If not, we lather, rinse, repeat with some other drug.
Alas, this also does mean I have to resume enduring Neupogen shots. :(
The Freaky News
Within the last year, they've started hearing about some kind of weird bone problem that happens with people on Zometa--in rare cases, part of the jawbone (and only the jawbone) actually dies, which can lead to exposed bone in the mouth.
Yuck.
They have not seen this before because in the past, breast cancer patients with stage IV disease didn't last very long and Zometa didn't exist. Now it does, and there are a lot more people living significantly longer. Lita stressed that this side-effect is rare, but I get a tightness in my chest when I hear people telling me about medical conditions I have a very small chance of experiencing. I've played those odds--several times--and keep on beating 'em. I have been instructed to make my orthodontist aware of the risk so that they can check for my jaw health at my regular appointments.
Great. All this money for braces only to have my lower jaw corrode away or fall off or whatever. That's just swell.
I was the first patient Dr. Hayes and Lita tried to treat with just Avastin and Zometa, in the hope that my disease is stable enough to treat without my having to undergo chemotherapy. As mentioned in a previous post, the blood test results from two weeks ago indicated that there could be some tumor activity: one of the markers remained the same, but the other blipped up.
So I went in for my bone scan and CT scan last week, which is always a joy. I was not able to eat during the day because of my evening scan, and by the time I got home I was ravenous and more than a little insane with low-blood-sugar-induced anger. I was angry about being stuck at the hospital with nothing to do for three and a half hours because I wouldn't have had time to get home and back. I was angry about not being able to eat. I was angry about the fact that barium even exists at all and that they can't inject the contrast dye into my port (Lita says now there's a new kind called a "superport" that they can use for injecting the dye...I may consider asking to get mine replaced). I was angry about slow traffic, at the person who honked at me for not turning quickly enough into the Wendy's parking lot, at the slowness of the drive-thru. I was angry at Brian for keeping me company while eating. I was once again angry at barium when it decided to go on its voyage to porcelain heaven--all at once. I was angry at pretty much anything it occurred to me to think of or notice.
I got my results today.
The Good News
My bones appear completely stable. There was no progression of disease in my hip/spine/ribs, and Lita is not at all worried about undue risk of fracture.
What a difference a year makes.
The Bad News
The bad news is that the disease in my liver does show progression, and as of today, both tumor markers were up (the one which had gotten down to 16-point-something is now about 200). I resumed the Abraxane today and have every expectation that those markers will go down again to near-normal levels. If not, we lather, rinse, repeat with some other drug.
Alas, this also does mean I have to resume enduring Neupogen shots. :(
The Freaky News
Within the last year, they've started hearing about some kind of weird bone problem that happens with people on Zometa--in rare cases, part of the jawbone (and only the jawbone) actually dies, which can lead to exposed bone in the mouth.
Yuck.
They have not seen this before because in the past, breast cancer patients with stage IV disease didn't last very long and Zometa didn't exist. Now it does, and there are a lot more people living significantly longer. Lita stressed that this side-effect is rare, but I get a tightness in my chest when I hear people telling me about medical conditions I have a very small chance of experiencing. I've played those odds--several times--and keep on beating 'em. I have been instructed to make my orthodontist aware of the risk so that they can check for my jaw health at my regular appointments.
Great. All this money for braces only to have my lower jaw corrode away or fall off or whatever. That's just swell.
Labels: Abraxane, Avastin, barium, blood tests, bone scan, Brian, chemo, CT scan, Dr. Hayes, hospital, Lita, liver, metastasis, Neupogen, tumor marker, Zometa
Saturday, December 23, 2006
Preventing a Recurrence
Recently over at YSC, a discussion arose about how to prevent a recurrence of cancer.
Whereas I can understand people wanting to feel like they are being proactive about their health--and that they have some control over their destiny, this sort of topic always makes me angry. Will cutting out alcohol help? Taking vitamins? Exercise is the key, isn't it?
If by omitting something, or by adding something else one can prevent a recurrence, the implication is that I did something wrong. Did my cancer recur because I still drink diet soda? Did it recur because my BMI is too high? Did I just not pray hard enough?
This was my response:
A lot of literature focuses on breast cancer prevention--early screenings, better evaluation of whose cancer will be aggressive, a vaccine--but I also hope that everyone remembers we do also need a CURE for those of us who didn't get lucky in our treatment.
I'll be waiting.
Whereas I can understand people wanting to feel like they are being proactive about their health--and that they have some control over their destiny, this sort of topic always makes me angry. Will cutting out alcohol help? Taking vitamins? Exercise is the key, isn't it?
If by omitting something, or by adding something else one can prevent a recurrence, the implication is that I did something wrong. Did my cancer recur because I still drink diet soda? Did it recur because my BMI is too high? Did I just not pray hard enough?
This was my response:
I refuse to believe that anything I did, or did not do, contributed to my recurrence. I've suffered enough shock/grief/anger/sadness about it without adding self-recrimination.
But now in order to maintain a healthy lifestyle I avoid:
snorting asbestos
bathing regularly in benzene
eating used aluminum ashtrays
playing in traffic
leaping into a pit of wild ferrets while dressed in a suit made of steak
blaming myself for things I can't control.
A lot of literature focuses on breast cancer prevention--early screenings, better evaluation of whose cancer will be aggressive, a vaccine--but I also hope that everyone remembers we do also need a CURE for those of us who didn't get lucky in our treatment.
I'll be waiting.
Labels: cure, metastasis, prevention, YSC
Thursday, November 03, 2005
"Oops"
I am seeing an oncologist who is part of my new network Monday evening at 8:30.
It turns out my pain is caused by metastatic bone lesions. Botox will not fix this.
It turns out my pain is caused by metastatic bone lesions. Botox will not fix this.
Labels: botox, Dr. Khan, metastasis
Wednesday, October 26, 2005
F*CK Insurance: a long, boring rant nobody wants to read
Firstly, I am honestly grateful that I even have health insurance, don't get me wrong. If I didn't have reasonably good health coverage, I would not be able to pay my bills and would probably have ended up moving back in with Mom and Skippy, who, while they love me--and I them, would drive me completely stark raving bonkers within a week.
I was notified in mid-September that the hospital with which my primary care doctor's office was affiliated, has decided to pull out of my insurance plan, which meant that I was going to have to choose a new primary care physician. I was not able to act on matters immediately, what with jury duty, trips, a conference, and generally being overwhelmed at how difficult it is to get things done when walking is so hard. Finally the insurance company indicated I would have to select someone by October 9. Not a problem, I thought. I went to the M-Care website and selected a PCP who is affiliated with the same health system as the doctor I'm seeing for my hip. A wise move, I thought.
My first visit to that office, already described here, was miserable. I ended up getting no help and was instead chastised for not having a health history on file with them. And given another prescription for an arthritis medication. I filled the prescription, then stuck it in one of the medicine cabinets at home where it will sit, unused.
A week later I decided it would be a good idea to get treatment for a nagging urinary tract infection, so I called and requested a same-day appointment. This time I saw a physician's assistant. This time the person examining me seemed interested and concerned about my symptoms. This time (oh how novel) he seemed to be troubled by chest pain in a patient who has a history of breast cancer.
"Do you have bone mets?" he asked.
This is not the question I really wanted to think about. I don't have an answer, and was afraid to even think it. Breast cancer, when it metastasises, often shows up in the bones, causing bone and joint pain.
"When was your last bone scan?" he wanted to know.
My last bone scan was done before my surgery, I think in October 2003. "I've had Xrays," I said. Maybe Xrays are magically good enough.
He gave me a prescription and instructions to call the hospital for a bone scan, which I agreed to do. He also wanted to know if I was going to be seeing an oncologist. At this point I got a little upset, because I had been trying to call this new doctor's office to get a referral to see Dr. Coello, my oncologist.
When you call the main number, you are told to press 2 to speak to the referral coordinator. Well, when you press 2, you don't actually get to speak to the referral coordinator. You hear a recording which says for all new and ongoing referrals, to hang up and dial the main number, then press 5 to leave a message for a physician. So I hung up, dialed the main number, pressed five, and when I tried to explain to the receptionist that I was having trouble getting a referral, she said, "Hold on," and then transferred my call. She transferred me to the referral coordinator's line, where I got to hear the message instructing me to hang up and dial the main number.
Lather, rinse, repeat.
I finally spoke to the receptionist and explained that transferring me wasn't helping, so she said, "Let me take a message and I'll give it to the referral coordinator." I am unconvinced that it went anywhere.
When I described this to the PAC seeing me that day, he got really disgusted and said that sort of thing shouldn't happen. He also told me that I would not be able to get a referral to see the person I have been seeing for the last two years, because Oakwood has oncologists on staff. My choices are:
Friday I went to see Dr. Coello, and when the lady at the front desk asked me for my referral, I completely lost it. I haltingly told her that I had been able to get one, and spent the next ten minutes weeping in their waiting room. They decided to let me see the doctor and wrangle the payment issue later. When I told him about the insurance issue, he was annoyed, but reassured me that his care of me was more or less a technicality now, since the chances of anything have spread are so remote as to be nearly impossible. He then wanted to know about my hip and chest pain, and suggested a "myotherapist" in Southfield who helped him with sciatic pain a few years ago. It really works, he claimed. It isn't covered by insurance, but it will be like a miracle.
Then he concluded that my chest pain was related to arthritis, and prescribed a coritcosterioid. I felt slightly better over the weekend; although the corticosteroid didn't seem to help with my chest, it made walking a little easier.
Monday as I was driving to work, I started having difficulty breathing normally. I can not take deep breaths because of the chest pain. I called and left a message for Dr. Coello. After looking at several alarming websites about potential causes of chest pain and shortness of breath (congenital heart failure, or maybe asthma. Maybe a blood clot. Or maybe severe anxiety), I called the primary care place to come in to see someone again, rather than waiting for the appointment which was scheduled for Tuesday.
I was given an appointment with the doctor I saw the first time I went there. As I was sitting in the waiting room, I noticed that well over half the patients consisted of unwed teen mothers and pregnant fifteen year olds.
The doctor was surprised I was still in pain and insisted it was musculo-skeletal. She listened to my lungs and got irked that I would not take deep breaths. She wanted to know why my paperwork had not been transferred yet, and told me that she couldn't do anything. "I am here only to help those people with sore throats and urinary tract infections and things like that they'd go to the emergency room for."
Silly me. Chest pain and shortness of breath is obviously not an emergency condition.
So I asked what I can do about "musculoskeletal pain" if anti-inflammatories have not helped. "Are you just going to prescribe another arthritis medication that doesn't work?" She came back with a prescription for Tylenol 3 (it does help with my hip, but not so much for the chest pain) and spent the last five minutes of my appointment repeatedly telling me to transfer my paperwork, keep my appointments, and see one of the doctors who is going to be at this facility longer than she will.
"Do you understand? Do you understand me?"
Good god. Don't speak to me like I'm an idiot; I comprehend that you are a patronizing [insert derogatory term here], have no interest in or ability to help me, and coming to this office at all is a complete waste of my time. These people are more concerned about paperwork than in dealing with somebody who has current problems. I understand wanting a health history, but how does the fact that you don't have information about every bladder infection I've ever had keep you from attempting to address what is wrong now?
Yesterday I got a call from Dr. Coello, who is very concerned that the medication he prescribed didn't help.He was surprised that the insurance switch has already happened; nobody told him on Friday. He wants to help me find an oncologist in this area and asked me to read off some names for him. It is important that I get a bone scan.
I am rather freaked out about the specialist being worried.
He is going to send his records to the PAC who prescribed my upcoming bone scan; I'm not sure I'll necessarily be going back there. They're used to dealing with knocked-up teenagers and wheezy old people; I don't want to go there EVER AGAIN.
Tomorrow I will ask the pain dude in Canton if he could recommend any of the people at his facility, or if he's familiar or could ask around about any of the oncologists on my list.
Also, F*CK Oakwood. My other primary care physician's office didn't refuse to give me referrals to out-of-network doctors. That's probably why they're no longer part of my bloody insurance plan.
I was notified in mid-September that the hospital with which my primary care doctor's office was affiliated, has decided to pull out of my insurance plan, which meant that I was going to have to choose a new primary care physician. I was not able to act on matters immediately, what with jury duty, trips, a conference, and generally being overwhelmed at how difficult it is to get things done when walking is so hard. Finally the insurance company indicated I would have to select someone by October 9. Not a problem, I thought. I went to the M-Care website and selected a PCP who is affiliated with the same health system as the doctor I'm seeing for my hip. A wise move, I thought.
My first visit to that office, already described here, was miserable. I ended up getting no help and was instead chastised for not having a health history on file with them. And given another prescription for an arthritis medication. I filled the prescription, then stuck it in one of the medicine cabinets at home where it will sit, unused.
A week later I decided it would be a good idea to get treatment for a nagging urinary tract infection, so I called and requested a same-day appointment. This time I saw a physician's assistant. This time the person examining me seemed interested and concerned about my symptoms. This time (oh how novel) he seemed to be troubled by chest pain in a patient who has a history of breast cancer.
"Do you have bone mets?" he asked.
This is not the question I really wanted to think about. I don't have an answer, and was afraid to even think it. Breast cancer, when it metastasises, often shows up in the bones, causing bone and joint pain.
"When was your last bone scan?" he wanted to know.
My last bone scan was done before my surgery, I think in October 2003. "I've had Xrays," I said. Maybe Xrays are magically good enough.
He gave me a prescription and instructions to call the hospital for a bone scan, which I agreed to do. He also wanted to know if I was going to be seeing an oncologist. At this point I got a little upset, because I had been trying to call this new doctor's office to get a referral to see Dr. Coello, my oncologist.
When you call the main number, you are told to press 2 to speak to the referral coordinator. Well, when you press 2, you don't actually get to speak to the referral coordinator. You hear a recording which says for all new and ongoing referrals, to hang up and dial the main number, then press 5 to leave a message for a physician. So I hung up, dialed the main number, pressed five, and when I tried to explain to the receptionist that I was having trouble getting a referral, she said, "Hold on," and then transferred my call. She transferred me to the referral coordinator's line, where I got to hear the message instructing me to hang up and dial the main number.
Lather, rinse, repeat.
I finally spoke to the receptionist and explained that transferring me wasn't helping, so she said, "Let me take a message and I'll give it to the referral coordinator." I am unconvinced that it went anywhere.
When I described this to the PAC seeing me that day, he got really disgusted and said that sort of thing shouldn't happen. He also told me that I would not be able to get a referral to see the person I have been seeing for the last two years, because Oakwood has oncologists on staff. My choices are:
- find a different PCP who is part of the same network as my current oncologist
- find a totally new oncologist who doesn't know me
- pay exorbitantly to continue seeing someone without authorization; hope that it's not too expensive
Friday I went to see Dr. Coello, and when the lady at the front desk asked me for my referral, I completely lost it. I haltingly told her that I had been able to get one, and spent the next ten minutes weeping in their waiting room. They decided to let me see the doctor and wrangle the payment issue later. When I told him about the insurance issue, he was annoyed, but reassured me that his care of me was more or less a technicality now, since the chances of anything have spread are so remote as to be nearly impossible. He then wanted to know about my hip and chest pain, and suggested a "myotherapist" in Southfield who helped him with sciatic pain a few years ago. It really works, he claimed. It isn't covered by insurance, but it will be like a miracle.
Then he concluded that my chest pain was related to arthritis, and prescribed a coritcosterioid. I felt slightly better over the weekend; although the corticosteroid didn't seem to help with my chest, it made walking a little easier.
Monday as I was driving to work, I started having difficulty breathing normally. I can not take deep breaths because of the chest pain. I called and left a message for Dr. Coello. After looking at several alarming websites about potential causes of chest pain and shortness of breath (congenital heart failure, or maybe asthma. Maybe a blood clot. Or maybe severe anxiety), I called the primary care place to come in to see someone again, rather than waiting for the appointment which was scheduled for Tuesday.
I was given an appointment with the doctor I saw the first time I went there. As I was sitting in the waiting room, I noticed that well over half the patients consisted of unwed teen mothers and pregnant fifteen year olds.
The doctor was surprised I was still in pain and insisted it was musculo-skeletal. She listened to my lungs and got irked that I would not take deep breaths. She wanted to know why my paperwork had not been transferred yet, and told me that she couldn't do anything. "I am here only to help those people with sore throats and urinary tract infections and things like that they'd go to the emergency room for."
Silly me. Chest pain and shortness of breath is obviously not an emergency condition.
So I asked what I can do about "musculoskeletal pain" if anti-inflammatories have not helped. "Are you just going to prescribe another arthritis medication that doesn't work?" She came back with a prescription for Tylenol 3 (it does help with my hip, but not so much for the chest pain) and spent the last five minutes of my appointment repeatedly telling me to transfer my paperwork, keep my appointments, and see one of the doctors who is going to be at this facility longer than she will.
"Do you understand? Do you understand me?"
Good god. Don't speak to me like I'm an idiot; I comprehend that you are a patronizing [insert derogatory term here], have no interest in or ability to help me, and coming to this office at all is a complete waste of my time. These people are more concerned about paperwork than in dealing with somebody who has current problems. I understand wanting a health history, but how does the fact that you don't have information about every bladder infection I've ever had keep you from attempting to address what is wrong now?
Yesterday I got a call from Dr. Coello, who is very concerned that the medication he prescribed didn't help.He was surprised that the insurance switch has already happened; nobody told him on Friday. He wants to help me find an oncologist in this area and asked me to read off some names for him. It is important that I get a bone scan.
I am rather freaked out about the specialist being worried.
He is going to send his records to the PAC who prescribed my upcoming bone scan; I'm not sure I'll necessarily be going back there. They're used to dealing with knocked-up teenagers and wheezy old people; I don't want to go there EVER AGAIN.
Tomorrow I will ask the pain dude in Canton if he could recommend any of the people at his facility, or if he's familiar or could ask around about any of the oncologists on my list.
Also, F*CK Oakwood. My other primary care physician's office didn't refuse to give me referrals to out-of-network doctors. That's probably why they're no longer part of my bloody insurance plan.
Labels: Bon Secours, bone scan, conference, Dr. Coello, hip, hospital, insurance, jury duty, M-Care, metastasis, Oakwood, referrals, x-rays
