Tuesday, June 26, 2007
Why I'm Scared of My Pockets
(Feel free to click the image for a close-up. It's icky.)Do you keep things in your pockets? Keys? Spare change? An empty gum wrapper? Your work ID card?
What if, when you went to reach in to your pocket to retrieve something, your fingernails didn't come out with your hand? The photo to the left illustrates a potential side-effect of Abraxane. The part of the nail below the green-black portion is the part that is still attached to my finger; all but my pinky on my right hand--and so far three of the nails on my left--have lifted off the nail bed. It's uncomfortable and troubling.
At my last doctor's appointment, I was hoping for advice that would help. Could I use nail glue to glue them down? What about stuff that might get stuck under there? Will they detach completely, or will the lifted parts grow out? Lita didn't know for sure. They might fall off completely. She did say that nails that lift from chemo treatments tend to not get nail infections, and if they smell weird, to use epsom salts. Dr. Hayes helpfully suggested, "wear nail polish."
Great.
My fingertips are sore. Typing is irritating and I can't open things very easily. Baxter has no idea that grabbing my hand with his little teeth might result in an unfortunate snack.
Finally, some non-icky photos:
Nyyyyyyeeeeeeeeeerrrrrrm [airplane noise]! (April)
I'm a good boy. (May)
I can touch the tip of my nose with my tongue. Check out my new big-boy harness and my Harley-Davidson tag. (June)
Hi. I'm getting so big! (June)Labels: Abraxane, Baxter, chemo, Dr. Hayes, Lita, nails
Monday, June 18, 2007
Cancer Patient Forced to Remove Cap on Amusement Park "Kiddie" Ride
This did not happen to me.
This happened to a woman who went to SeaWorld, San Antonio with her family. After riding other rides (including a large waterslide) with her cap on, she boarded a slow-moving children's ride with her two-year old. The ride involved spinning paint buckets; it was not vigorous enough to require seatbelts.
Way to go, SeaWorld. You made a woman with cancer uncover her head and cry in front of not only her two-year old child but god knows how many strangers.
She says she decided to complain to the attendant's supervisor, who sympathized but told her it is the "policy" to have no loose objects as they may fly off and interfere with the machinery. She watched as many people rode with sunglasses and eyeglasses, which have the same potential for flying off as a cap. The sign on the ride actually says that "loose objects must be secured," not that "loose objects must be taken off the heads of patients undergoing chemotherapy." (I can guarantee you that people undergoing chemotherapy are quite used to securing the hats on their heads.)
SeaWorld is run by Busch Entertainment Corporation, a subsidiary of Anheuser-Busch, best known for making Budweiser.
Anheuser-Busch and Busch Entertainment Corporation clearly need to provide more guidance to their front-line employees and low-level supervisors regarding when it is appropriate to think and act compassionately rather than mindlessly (and rather inaccurately) enforcing some "rule" which results in the humiliation of paying customers.
In fact, this is something everyone at the company could stand to improve upon...
This did not happen to me, but I would certainly be writing to the company's board of directors regarding the horrible experience if it had.
Busch Entertainment Corporation:
Keith M. Kasen, Chairman of the Board and President (he also served as Executive Vice President and General Manager of the SeaWorld theme parks in Orlando, Florida [2000-2003] and in San Antonio, Texas [1997-2000])
David J. Grabe, Vice President of Finance
David L. Hammer, Vice President of Human Resources
Also, the "Key Executives" listed for Anheuser-Busch, the parent company are:
Patrick T. Stokes - Chairman, Subsidiary Officer
August A. Busch IV - Chief Executive Officer, President, Subsidiary Officer
One Busch Place
St. Louis, MO 63118
United States
Phone: 314 577-2000
Fax: 314 577-2900
This happened to a woman who went to SeaWorld, San Antonio with her family. After riding other rides (including a large waterslide) with her cap on, she boarded a slow-moving children's ride with her two-year old. The ride involved spinning paint buckets; it was not vigorous enough to require seatbelts.
"I'm sitting there with my two-year old and the attendant tells me that I have to remove my cap. I explain that I have no hair and had ridden other rides with no problem. She insists. I get really angry and fling it to the side off the ride and sit there with my bald head. My husband comes to my rescue and offers to ride the ride. I leave in tears while he takes my place."
Way to go, SeaWorld. You made a woman with cancer uncover her head and cry in front of not only her two-year old child but god knows how many strangers.
She says she decided to complain to the attendant's supervisor, who sympathized but told her it is the "policy" to have no loose objects as they may fly off and interfere with the machinery. She watched as many people rode with sunglasses and eyeglasses, which have the same potential for flying off as a cap. The sign on the ride actually says that "loose objects must be secured," not that "loose objects must be taken off the heads of patients undergoing chemotherapy." (I can guarantee you that people undergoing chemotherapy are quite used to securing the hats on their heads.)
SeaWorld is run by Busch Entertainment Corporation, a subsidiary of Anheuser-Busch, best known for making Budweiser.
Anheuser-Busch and Busch Entertainment Corporation clearly need to provide more guidance to their front-line employees and low-level supervisors regarding when it is appropriate to think and act compassionately rather than mindlessly (and rather inaccurately) enforcing some "rule" which results in the humiliation of paying customers.
In fact, this is something everyone at the company could stand to improve upon...
This did not happen to me, but I would certainly be writing to the company's board of directors regarding the horrible experience if it had.
Busch Entertainment Corporation:
Keith M. Kasen, Chairman of the Board and President (he also served as Executive Vice President and General Manager of the SeaWorld theme parks in Orlando, Florida [2000-2003] and in San Antonio, Texas [1997-2000])
David J. Grabe, Vice President of Finance
David L. Hammer, Vice President of Human Resources
Also, the "Key Executives" listed for Anheuser-Busch, the parent company are:
Patrick T. Stokes - Chairman, Subsidiary Officer
August A. Busch IV - Chief Executive Officer, President, Subsidiary Officer
One Busch Place
St. Louis, MO 63118
United States
Phone: 314 577-2000
Fax: 314 577-2900
Labels: baldness, chemo, hair, hat, SeaWorld
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
Friday, June 15, 2007
Sleep: the Dream That Eludes
I had a nasty cold last week (which now Brian seems to be getting). It has progressed to a nagging, unproductive cough, robbing me of sleep and sanity. I sound awful, and not just because of the retainers. It is an effort to squeeze sound out of my throat. I showed up for work yesterday because I had four meetings I really didn't think I could skip; people there keep looking at me funny.
I was coughing at infusion on Tuesday, so the nurses had me talk to a PA. The PA asked me a series of questions about my cough and thought it might be a "reactive airway" thing, and asked if I'd ever had asthma. She set me up with an appointment with my general practitioner for Wednesday evening--I went to the doctor and wrote down as my reason for visit: "horrible, sleep-depriving cough." She gave me a boatload of medications (prednisone, an antibiotic, special cough medicine with a narcotic) and promised I would be able to sleep that night. The codeine made me loopy, I saw weird stuff when I closed my eyes, but I could not stop coughing and my brain would not shut off.
I'm still supposed to go for a chest ex-ray, even though everyone agrees my lungs sound ok. I just can't breathe without hacking. I am wary of trying to drive anywhere, even to get the chest ex-ray. I know that I am impaired.
I can't even think of a clever way to conclude this post. It looks like I will not be traveling to Cleveland this weekend (it would have worked out great...seeing my dad on Father's Day...quel bummer). I am going to try to drag my carcass to Race for the Cure Saturday. Maybe I should call and beg the doctor for either some kind of inhaler or a horse tranquilizer.
I was coughing at infusion on Tuesday, so the nurses had me talk to a PA. The PA asked me a series of questions about my cough and thought it might be a "reactive airway" thing, and asked if I'd ever had asthma. She set me up with an appointment with my general practitioner for Wednesday evening--I went to the doctor and wrote down as my reason for visit: "horrible, sleep-depriving cough." She gave me a boatload of medications (prednisone, an antibiotic, special cough medicine with a narcotic) and promised I would be able to sleep that night. The codeine made me loopy, I saw weird stuff when I closed my eyes, but I could not stop coughing and my brain would not shut off.
I'm still supposed to go for a chest ex-ray, even though everyone agrees my lungs sound ok. I just can't breathe without hacking. I am wary of trying to drive anywhere, even to get the chest ex-ray. I know that I am impaired.
I can't even think of a clever way to conclude this post. It looks like I will not be traveling to Cleveland this weekend (it would have worked out great...seeing my dad on Father's Day...quel bummer). I am going to try to drag my carcass to Race for the Cure Saturday. Maybe I should call and beg the doctor for either some kind of inhaler or a horse tranquilizer.
Labels: Brian, Cleveland, codeine, Dad, infusion, prednisone, Race for the Cure, sick days
Monday, June 11, 2007
Another Day, Another Speech Impediment
I have traded my braces for retainers, which feel equally confining, if less pointy and jabby. My reasons for halting the orthodontic treatment early make me not quite as thrilled as I would normally be to have unfettered teeth (at least teeth unfettered by bits of metal actually glued to them), but I will be happy enough to be able to enjoy ribs and corn on the cob. I am even looking forward to eating apples, which gives me at least one thing in common with Captain Barbossa.
I am to wear the retainers every day and all night, except when eating or brushing my teeth. It will be nice to be able to floss normally again. I have two rather large gaps on the top from where I had teeth extracted; these gaps have steadfastly refused to close (due, I believe to my treatment with Zometa), so I have thrown in the orthodontic towel and now will enjoy an entirely new difficulty in speaking intelligibly.
I hope I will be able to play my flute again, at least. I realize I will need a good deal of practice, but at least now pursing my lips in the appropriate manner won't actually hurt.
I will never be as good a whistler as I once was, and that wasn't very good, either.
Right now talking is the real challenge, compounded by the fact that I am suffering the ill effects of some virus or other which was enough to knock me flat on my back for a few days, miss a round of mini-golf with my mom, and actually request my Neupogen shots, which I usually weasel out of taking. The lower retainer pushes my tongue upwards, and the upper retainer takes up half of my mouth.
Proteethius Unbound: and nobody can understand a damn word I'm saying.
I am to wear the retainers every day and all night, except when eating or brushing my teeth. It will be nice to be able to floss normally again. I have two rather large gaps on the top from where I had teeth extracted; these gaps have steadfastly refused to close (due, I believe to my treatment with Zometa), so I have thrown in the orthodontic towel and now will enjoy an entirely new difficulty in speaking intelligibly.
I hope I will be able to play my flute again, at least. I realize I will need a good deal of practice, but at least now pursing my lips in the appropriate manner won't actually hurt.
I will never be as good a whistler as I once was, and that wasn't very good, either.
Right now talking is the real challenge, compounded by the fact that I am suffering the ill effects of some virus or other which was enough to knock me flat on my back for a few days, miss a round of mini-golf with my mom, and actually request my Neupogen shots, which I usually weasel out of taking. The lower retainer pushes my tongue upwards, and the upper retainer takes up half of my mouth.
Proteethius Unbound: and nobody can understand a damn word I'm saying.
Labels: braces, Neupogen, Zometa
Thursday, June 07, 2007
Susan G. Komen Race for the Cure in Detroit
Most of the (three, maybe four) people who look at this blog have probably already received solicitation emails, but it doesn't hurt to ask more than once.
Please consider sponsoring me in this year's Race for the Cure.
Few people know that Susan G. Komen, for whom the foundation was named, died of breast cancer at age 36. She listened to her doctors, didn't think to go to a research center, was pronounced "cured," and then found out (horribly) that her doctors were mistaken.
Sound familiar?
Susan G. Komen was treated for her recurrent cancer in a time when the medications I am on didn't exist. Perhaps with more advanced treatment, she could have survived. The drugs I am on now didn't exist just a few years ago, and I hope that even better treatments come along in the near future.
The Susan G. Komen Race for the cure is dedicated to supporting "the eradication of breast cancer as a life-threatening disease." I'd like to see that shortened to "the eradication of breast cancer." Neither will happen without awareness, better screening, patient advocacy and research, all of which are causes supported by Race for the Cure.
You can support it, too.
A year and a half ago, I wasn't sure I'd ever be walking without assistance, and I am happy to be participating in the Race for the Cure for the second time since then.
I also have very selfish reasons for asking for donations: If I raise enough money, I get a hat. Brian took the hat I got last year so I need another one.
Please consider sponsoring me in this year's Race for the Cure.
Few people know that Susan G. Komen, for whom the foundation was named, died of breast cancer at age 36. She listened to her doctors, didn't think to go to a research center, was pronounced "cured," and then found out (horribly) that her doctors were mistaken.
Sound familiar?
Susan G. Komen was treated for her recurrent cancer in a time when the medications I am on didn't exist. Perhaps with more advanced treatment, she could have survived. The drugs I am on now didn't exist just a few years ago, and I hope that even better treatments come along in the near future.
The Susan G. Komen Race for the cure is dedicated to supporting "the eradication of breast cancer as a life-threatening disease." I'd like to see that shortened to "the eradication of breast cancer." Neither will happen without awareness, better screening, patient advocacy and research, all of which are causes supported by Race for the Cure.
You can support it, too.
A year and a half ago, I wasn't sure I'd ever be walking without assistance, and I am happy to be participating in the Race for the Cure for the second time since then.
I also have very selfish reasons for asking for donations: If I raise enough money, I get a hat. Brian took the hat I got last year so I need another one.
Labels: awareness, Brian, Race for the Cure
