(Original post date: November 22, 2009)
“Why should I keep these breasts if my annual mammograms aren’t effective?” I had been doing everything right. My surgeon’s response: “You are an MRI girl.” And guess what, I didn’t know I was an MRI girl until my breast cancer surgeon told me. In fact, I have probably been an MRI girl my whole adult life.
I have fibrocystic breasts, which is pretty common. My jaw nearly hit the floor when I saw the film from my mammogram as my surgeon said, “The problem is your breast tissue and cancer both appear white.” Indeed, the entire film was white. “The radiologist made a good catch; you were lucky.” This she said as she pointed to a smallish starburst, similar to pinching your shirt and giving the material a twist. That’s all there was on the mammogram. So that day, at 43 years old and not yet fully diagnosed with Stage IIa invasive ductal carcinoma, with one cancerous lymph node, I learned that I am an MRI girl. That means, after chemo and radiation, my follow-ups will be alternating every six months between a mammogram and an MRI. Had I had an MRI earlier, had my preventative plan included an MRI on occasion, well, perhaps I wouldn’t be bald now.
The task force currently suggesting the screening age be moved from women 40 years old to 50 years old claim to be making this recommendation not on costs but on scientific research. I don’t completely understand the members’ rationale. Stress is mentioned. Are the task force’s opinions weighing the benefits of mammograms with the “false positives” picked up by mammograms, causing stress in women who are left for some times weeks with the uncertainty of what the blip on the screen really is? That uncertainty was the most difficult part of this whole process, undeniably so. But knowledge is power. In the end, knowledge doesn’t always come easily. The school of hard knocks. It still exists.
As an MRI girl, WITH MY BREAST TYPE, I have a complete lack of faith in mammograms. For me, they are archaic. They are effective screening mechanisms for many women and my oncologist reminds me that it did pick up the cancer but… I am an MRI girl. And because of that I’ve had five areas biopsied, I’ve had numerous ultrasounds, I’ve had two MRI’s, I’ve had a PET scan, I’ve had three surgeries, I’m having chemo, and I’ll have radiation. Here and now, I’m thankful for each and every one of these treatments. Here and now, I’m choosing not to lift the heavy curtain, not to share the physical details of any of these treatments. Should I, the task force would have even a shinier new definition of stress.
When new computers come out, we wait for the hype to settle and when that happens, the price decreases and even more people buy. The economics of breast cancer screening does not work that way. I believe there are two reasons it was never suggested that I have a screening MRI: The cost of the initial test and the likelihood of false positives, of seeing too much, which would result in more expensive tests and biopsies.
As for a sampling of costs associated with my treatment, my MRI’s were approximately $2,500 each and one 6 mg shot of Neulasta, the white blood cell booster, is $3,000. As for seeing too much, while uncomfortable, I’d rather have had five sites biopsied a year or two ago than be wearing a red cap on my bald head today at 3 a.m.
Thursday, April 7, 2011
Medical Expenses
(Original post date: November 20, 2009)
One goal for the day: To go through four inches of unopened bills in the medical file.
Progress: All have been opened and are now dispersed into nine different vendor piles.
The review: Many are from the summer. Operation prep, biopsies, metal clip placement to mark the tumors, the surgeon, three surgeries. I haven’t delved into the costs to see if they are accurate, nor have I really felt like reviewing the physical details.
Instead, my attention turns to another smaller, manageable one-service date affair. The expenses of September 18, 2009. The day of the seal.
There are two sets of billings, one from the hospital and one from the doctor. Knowing the details of the day, I find great humor in the billing descriptions.
From the hospital “ER Charge – Level 2” $220 *** Each showing of Nemo =$110 -- Plus there’s a slight discrepancy: we were Level 4 the day of the event.
From the hospital “Removal of foreign body” $200 *** The rock was removed with long-handled tweezers owned by the hospital. Foreign body? It was a home-grown rock.
From the doctor “Physician” $86 *** Diagnosis: “Liam, you have a rock in your nose.” Well-established before the trip.
From the doctor “Surgery” $357 *** 20-second operation of long-handled tweezers.
From the hospital “Service Charge” $6 *** Bubbles? Crayons? Purell? Probably Purell.
Nearly $900. I think a variety pack of crochet hooks would run less than $10.
The bottom line: What I already knew. I would be independently wealthy if paid for the services I provide.
:)
Linda
One goal for the day: To go through four inches of unopened bills in the medical file.
Progress: All have been opened and are now dispersed into nine different vendor piles.
The review: Many are from the summer. Operation prep, biopsies, metal clip placement to mark the tumors, the surgeon, three surgeries. I haven’t delved into the costs to see if they are accurate, nor have I really felt like reviewing the physical details.
Instead, my attention turns to another smaller, manageable one-service date affair. The expenses of September 18, 2009. The day of the seal.
There are two sets of billings, one from the hospital and one from the doctor. Knowing the details of the day, I find great humor in the billing descriptions.
From the hospital “ER Charge – Level 2” $220 *** Each showing of Nemo =$110 -- Plus there’s a slight discrepancy: we were Level 4 the day of the event.
From the hospital “Removal of foreign body” $200 *** The rock was removed with long-handled tweezers owned by the hospital. Foreign body? It was a home-grown rock.
From the doctor “Physician” $86 *** Diagnosis: “Liam, you have a rock in your nose.” Well-established before the trip.
From the doctor “Surgery” $357 *** 20-second operation of long-handled tweezers.
From the hospital “Service Charge” $6 *** Bubbles? Crayons? Purell? Probably Purell.
Nearly $900. I think a variety pack of crochet hooks would run less than $10.
The bottom line: What I already knew. I would be independently wealthy if paid for the services I provide.
:)
Linda
;'')
(Original post date: November 19, 2009 -- in response to friend's and family's support through commenting to my postings)
Last February, I reawakened a 25-year-old passion for writing and, in the last few months, I have found either straight-forward or round-about ways… big breath… to share what I write. While most of what I write is not in a nut shell, there are certainly times when I am left wordless.
I often read through the comments that some of you have left. They make me laugh; they make me think; they make me thankful. And some I can respond to and some I cannot. So this afternoon, I need to clear the air. You need to know that I read them all. You need to know that sometimes I stand up and walk away, speechless… wordless. You need to know that if there’s a lack of reply, my screen may be blurry, my keyboard may be wet, but I have a smile on my face.
Many times on this journey I have shed tears, but a minority of them have been over this crazy thing called cancer. In a world where the headlines are negative and where our knee-jerk reaction is sometimes cynical, I am left in awe: there is much kindness in the world. And that bowls me over regularly. More than breast cancer ever has.
Staying strong with occasional happy tears -> ;’’)
Linda
Last February, I reawakened a 25-year-old passion for writing and, in the last few months, I have found either straight-forward or round-about ways… big breath… to share what I write. While most of what I write is not in a nut shell, there are certainly times when I am left wordless.
I often read through the comments that some of you have left. They make me laugh; they make me think; they make me thankful. And some I can respond to and some I cannot. So this afternoon, I need to clear the air. You need to know that I read them all. You need to know that sometimes I stand up and walk away, speechless… wordless. You need to know that if there’s a lack of reply, my screen may be blurry, my keyboard may be wet, but I have a smile on my face.
Many times on this journey I have shed tears, but a minority of them have been over this crazy thing called cancer. In a world where the headlines are negative and where our knee-jerk reaction is sometimes cynical, I am left in awe: there is much kindness in the world. And that bowls me over regularly. More than breast cancer ever has.
Staying strong with occasional happy tears -> ;’’)
Linda
A Mish-Mash
(Original post date: November 18, 2009)
Some days I’m better at collecting words and typing them from old journal entries than writing new words. Today is one of those days.
September 26, 2009 (a mish-mash of words and thoughts)
Choice. There’s always a choice.
Deb’s corn bags are wonderful. A couple minutes in the microwave and they radiate heat to achy parts like magic. Deb makes these bags using field corn – perhaps imported to Massachusetts from Iowa? :)
The moment is the safest place to be, breathing in and out.
I told a friend I LOVE fall because of the change. She laughed at me, “It’s the same every year!” Aha, so it’s safe change.
Occasionally, I call Dad in the middle of the day… and he always answers his cell phone. Last week I caught him while he was feeding the cows in the timber. I got to hear the cows!! Of course, they were vocal because he had stopped mid-chore to talk to me, so the conversation didn’t last long. He was getting butted left, right and center. It was good to hear the cows. Going to the farm with the boys is ritualistic. We do a hunt for all the tractors, see if they have an orange triangle on the back, sit on the tractors with their uncle. Dad takes us in his pickup truck for a drive to the timber to see the cows. In the spring this meant looking for tiny clumps of fresh clean fur – baby calves. Spring break 2010 in Iowa? I want to kiss the black dirt and the dusty gravel.
End of journal entry.
Staying strong,
Linda
Some days I’m better at collecting words and typing them from old journal entries than writing new words. Today is one of those days.
September 26, 2009 (a mish-mash of words and thoughts)
Choice. There’s always a choice.
Deb’s corn bags are wonderful. A couple minutes in the microwave and they radiate heat to achy parts like magic. Deb makes these bags using field corn – perhaps imported to Massachusetts from Iowa? :)
The moment is the safest place to be, breathing in and out.
I told a friend I LOVE fall because of the change. She laughed at me, “It’s the same every year!” Aha, so it’s safe change.
Occasionally, I call Dad in the middle of the day… and he always answers his cell phone. Last week I caught him while he was feeding the cows in the timber. I got to hear the cows!! Of course, they were vocal because he had stopped mid-chore to talk to me, so the conversation didn’t last long. He was getting butted left, right and center. It was good to hear the cows. Going to the farm with the boys is ritualistic. We do a hunt for all the tractors, see if they have an orange triangle on the back, sit on the tractors with their uncle. Dad takes us in his pickup truck for a drive to the timber to see the cows. In the spring this meant looking for tiny clumps of fresh clean fur – baby calves. Spring break 2010 in Iowa? I want to kiss the black dirt and the dusty gravel.
End of journal entry.
Staying strong,
Linda
Frustration
(Original post date: November 17, 2009)
This is not my speed. I slept from 7 p.m. until 5:30 a.m. After ten hours of sleep, I am normally a power house. And I was for about four hours this morning. Then, poof. Energy gone, back to the same old Day 5 fog, ache and tiredness. After sleeping that long, I thought for sure I would be going all day. But, no. It was a quick adrenaline rush full of power. In a few short hours it left me shaky, and then wiped out. This must be “fatigue.”
I’m sitting in the basement amidst our new storage units in the guest bedroom. We bought a house with square rooms and little storage; we are not square people with a little bit of stuff. We carted lots of stuff from Chicago to Boston, and, four years later, we are still unpacking. This room is my chemo project. This morning I did manage to empty one box of games into my new storage unit. Every day I’m working in it a little bit so that by the end of chemo the basement will be organized. And like my three-year-old Liam, or perhaps more like my 89-year-old Grandma Murphy, “I’m doing it myself.” Whether moving three books to the shelves, ten games to a cupboard or one pencil to the newly found supply cabinet, my aim is to work on it throughout these chemo days until it’s full. It’s a clean plate just waiting for my touch, my design, my energy. Perhaps tomorrow I’ll have a bit more energy.
For now, it’s warm tea, a warm cap, warm corn bags, warm fleece blanket, perhaps a nap… and not a lot of patience for this pace.
Staying strong but feeling ornery,
Linda
This is not my speed. I slept from 7 p.m. until 5:30 a.m. After ten hours of sleep, I am normally a power house. And I was for about four hours this morning. Then, poof. Energy gone, back to the same old Day 5 fog, ache and tiredness. After sleeping that long, I thought for sure I would be going all day. But, no. It was a quick adrenaline rush full of power. In a few short hours it left me shaky, and then wiped out. This must be “fatigue.”
I’m sitting in the basement amidst our new storage units in the guest bedroom. We bought a house with square rooms and little storage; we are not square people with a little bit of stuff. We carted lots of stuff from Chicago to Boston, and, four years later, we are still unpacking. This room is my chemo project. This morning I did manage to empty one box of games into my new storage unit. Every day I’m working in it a little bit so that by the end of chemo the basement will be organized. And like my three-year-old Liam, or perhaps more like my 89-year-old Grandma Murphy, “I’m doing it myself.” Whether moving three books to the shelves, ten games to a cupboard or one pencil to the newly found supply cabinet, my aim is to work on it throughout these chemo days until it’s full. It’s a clean plate just waiting for my touch, my design, my energy. Perhaps tomorrow I’ll have a bit more energy.
For now, it’s warm tea, a warm cap, warm corn bags, warm fleece blanket, perhaps a nap… and not a lot of patience for this pace.
Staying strong but feeling ornery,
Linda
The Wig and the Real Hair
(Original post date: November 16, 2009)
I nearly did her in a week ago! Last Saturday I put my wig on in the morning and wore it all day. With fewer cactus needles, it’s much more comfortable and it keeps heat in -- although I prefer not wearing it in the house. Anyway, Liam and I started preparing the rice. He is all about cooking right now. Loves it! I put the rice on the stove, washed the asparagus—basically the normal supper time groove. Then it happened: I took the lid off the rice and my glasses fogged up. I sprung back away from the stove. The tenderness of the situation hitting me full force. I may very well have singed my $400 wig on the very first day I wore it for any length of time. I zipped to the bathroom. My bangs were intact. Whew!
My college friend and her daughter were here last week while Bill was working in China. The first night they arrived I put a casserole in the oven for dinner. I opened the oven door and it happened again. Whoosh! Hot steamy air heading straight for my hair! I leaned back to let the steam escape in front of me. Closing the door, I zipped to the bathroom again. My bangs were still intact. I went downstairs where our guests were unpacking. “Guys, I need to take my wig off to cook, and I want you to know that so you aren’t shocked to come upstairs and see me bald in the kitchen. OK?” So I did a private reveal and they were both OK with it.
A few nights ago I thought I should do a “check” with Will. We’ve started playing a game of “you ask me any two questions and I ask you any two questions.” They are usually questions of favorites, but I make it clear that any topic is fair game. The question I needed answered, “Will, do you like my wig or my bald head better?” His immediate reply, “Hmm, I like them both,” sounding a bit disappointed at the lack of complexity of the question. Whew! I know where Liam stands. Often when I have the wig on, he’ll point to it and say, “I want spiky hair!” We’ve talked about the fact that when it’s on my head it’s mine and only I can take it off. Finally after many checks with Bill, he says he doesn’t mind one way or another. I love him.
I had cupboards installed in the basement and it took a day to install them, so I went down in the morning and had a chat with the two guys, then said, “By the way I’m on chemo and I don’t always wear my wig in the house. So you will probably see me bald.” “No problem!”
A good friend stopped by one day and I answered the door wigless. She didn’t faint and seemed to feel comfortable. So... I have established my home as wig-free territory, at least until the snow flies. If you stop by, don’t be surprised if I answer the door as Baldy. I’m OK with it. But if you really aren’t, I understand completely. I would rather dress for your visit than not have your visit. :)
If you’re curious…
The wig is washable. If I wear it daily, I need to wash it once a month in cool water, then hang it on a wig stand to dry. As it dries, it bounces back into style. An easy shake and quick comb should bring it back to its original look.
I know where to place it because the front of the wig should be set the width of four fingers, laid horizontally, above my eyebrows. It’s amazing how accurate that is. By the way, if you are a true friend, you will tell me if something is a little askew. I would tell you if you had a bugger. That’s normal conversation in our house.
Most of the dark hair on my head is gone, but I still see and feel a lot of hair. What’s left is blonde – or gray from the week of expereementing. If I’m really this gray, I’m putting Katie, my hair dresser, on alert now to restore my “true” color in the spring the minute I’m released from chemo life and have put the wig in long-term storage. I’ve heard I may have to wait a while before going back to my color. The hair now is softer than the original full-head-of-hair crew cut of Halloween. A friend of mine said it feels like chick fuzz. And that’s what it feels like when I walk: The relative wind I create moves it. It reminds me of walking through of a roomful of cobwebs gently brushing my scalp. I get the same sensation on my legs, but that’s a different story.
Staying strong and not quite hairless,
Linda
I nearly did her in a week ago! Last Saturday I put my wig on in the morning and wore it all day. With fewer cactus needles, it’s much more comfortable and it keeps heat in -- although I prefer not wearing it in the house. Anyway, Liam and I started preparing the rice. He is all about cooking right now. Loves it! I put the rice on the stove, washed the asparagus—basically the normal supper time groove. Then it happened: I took the lid off the rice and my glasses fogged up. I sprung back away from the stove. The tenderness of the situation hitting me full force. I may very well have singed my $400 wig on the very first day I wore it for any length of time. I zipped to the bathroom. My bangs were intact. Whew!
My college friend and her daughter were here last week while Bill was working in China. The first night they arrived I put a casserole in the oven for dinner. I opened the oven door and it happened again. Whoosh! Hot steamy air heading straight for my hair! I leaned back to let the steam escape in front of me. Closing the door, I zipped to the bathroom again. My bangs were still intact. I went downstairs where our guests were unpacking. “Guys, I need to take my wig off to cook, and I want you to know that so you aren’t shocked to come upstairs and see me bald in the kitchen. OK?” So I did a private reveal and they were both OK with it.
A few nights ago I thought I should do a “check” with Will. We’ve started playing a game of “you ask me any two questions and I ask you any two questions.” They are usually questions of favorites, but I make it clear that any topic is fair game. The question I needed answered, “Will, do you like my wig or my bald head better?” His immediate reply, “Hmm, I like them both,” sounding a bit disappointed at the lack of complexity of the question. Whew! I know where Liam stands. Often when I have the wig on, he’ll point to it and say, “I want spiky hair!” We’ve talked about the fact that when it’s on my head it’s mine and only I can take it off. Finally after many checks with Bill, he says he doesn’t mind one way or another. I love him.
I had cupboards installed in the basement and it took a day to install them, so I went down in the morning and had a chat with the two guys, then said, “By the way I’m on chemo and I don’t always wear my wig in the house. So you will probably see me bald.” “No problem!”
A good friend stopped by one day and I answered the door wigless. She didn’t faint and seemed to feel comfortable. So... I have established my home as wig-free territory, at least until the snow flies. If you stop by, don’t be surprised if I answer the door as Baldy. I’m OK with it. But if you really aren’t, I understand completely. I would rather dress for your visit than not have your visit. :)
If you’re curious…
The wig is washable. If I wear it daily, I need to wash it once a month in cool water, then hang it on a wig stand to dry. As it dries, it bounces back into style. An easy shake and quick comb should bring it back to its original look.
I know where to place it because the front of the wig should be set the width of four fingers, laid horizontally, above my eyebrows. It’s amazing how accurate that is. By the way, if you are a true friend, you will tell me if something is a little askew. I would tell you if you had a bugger. That’s normal conversation in our house.
Most of the dark hair on my head is gone, but I still see and feel a lot of hair. What’s left is blonde – or gray from the week of expereementing. If I’m really this gray, I’m putting Katie, my hair dresser, on alert now to restore my “true” color in the spring the minute I’m released from chemo life and have put the wig in long-term storage. I’ve heard I may have to wait a while before going back to my color. The hair now is softer than the original full-head-of-hair crew cut of Halloween. A friend of mine said it feels like chick fuzz. And that’s what it feels like when I walk: The relative wind I create moves it. It reminds me of walking through of a roomful of cobwebs gently brushing my scalp. I get the same sensation on my legs, but that’s a different story.
Staying strong and not quite hairless,
Linda
3 down 5 to go!
(Original post date: November 13, 2009)
Home and snuggled in bed with my cherubs! All went well today; I had a view of the Charles River. Bill's in China, so a college friend and her daughter, who is my god-daughter, came out from Chicago for the week. They dropped me off at MGH and then came back to pick Will and Liam from school. Then my neighbor brought me home. All worked like clock work! (Thanks, guys!)
My port finally worked with my head between my knees. I'm looking for a mounted camera next time and perhaps taking a game of Twister.
Bill returns at midnight tomorrow. So Sunday will be a "Mommy, Daddy, Will & Liam" day!
Have a great weekend!
Staying strong,
Linda
Home and snuggled in bed with my cherubs! All went well today; I had a view of the Charles River. Bill's in China, so a college friend and her daughter, who is my god-daughter, came out from Chicago for the week. They dropped me off at MGH and then came back to pick Will and Liam from school. Then my neighbor brought me home. All worked like clock work! (Thanks, guys!)
My port finally worked with my head between my knees. I'm looking for a mounted camera next time and perhaps taking a game of Twister.
Bill returns at midnight tomorrow. So Sunday will be a "Mommy, Daddy, Will & Liam" day!
Have a great weekend!
Staying strong,
Linda
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