If you are starting chemo for the first time, or have just started it, this video is for you. It is my very own invention, and if there was any way to make money on it, I would. I do, after all, have a child starting college in one month.
And is that ever going to be a blog post. A long, whiny, tear-filled post. And I won't even be talking about the money. Yet.
Anyway, since there is no way to capitalize on this idea, I figured I would just help a cancer sister (or brother) out. In return, please like this video and/or subscribe to my YouTube channel. I think it's time to prove that YouTube is not just the realm of the young, beautiful and well-lit, don't you? Why can't the old and sick have sponsors and fights with other YouTubers and all that fun stuff?
Typically, if you are on a chemo that causes hair loss (and not all do) your body hair falls out first, and the eyelashes and the eyebrows are the last to go. You may be lucky and keep some of your brows but if so, they will look like vague shadows of their former selves and will not be defined enough to recreate them well.
My eyelashes hung in there - two of them. They looked like spikes sticking out of my lids. Why I didn't pull them out I don't know; maybe it's the same reason I kept one of my breasts. I wanted a souvenir of what had been.
But then why don't I dye my hair back to its "real" color? Life is a mystery, girls.
Please share this tip because I do believe it will be helpful for many a cancer newbie; they might appreciate it more than you know. Losing your hair is something we can manage and deal with but losing your eyebrows and lashes - that is what really makes you look sick.
Even at the "look good, feel better" class I didn't see this idea mentioned and hey, they taught us to make a hat out of an old tee shirt!
I do believe it is my great contribution to cancer society.
Thursday, August 28, 2014
Saturday, August 23, 2014
My Bid for SXSW - New Video and Vote!
Have you voted for me to be on a Panel at SXSW yet? David Kopp from Healthline and I want to talk about what it would take to reach for a cure for cancer, and what today's modern, empowered patient can do to help achieve that goal. Surprise, dumping a bucket of water on your head is not part of the plan!
To vote for me start by going here:
https://auth.sxsw.com/users/sign_in
Create your account.
They will send you a confirmation email. Once you click on confirm, you can vote for me here:
http://panelpicker.sxsw.com/vote/40477
Click the thumbs up icon to the left.
Also, if you have a registered Disqus account, you can log in with that and leave me a comment. If you answer some of the above questions in the comments I can include your viewpoint in what I say at the SXSW panel. I will be acting to represent all cancer patients, not just myself, so your point of view is important to me.
For some reason, I couldn't do a direct YouTube link to the video in this blog, so I had to save it and then reupload it. If you want to commont on YouTube, click here: https://www.youtube.com/watch?v=weCVRZbgIWo
Thursday, August 21, 2014
Friends
In the late 1980s I was a young, single mother, with big hair, of course. Looking back through the dewy gauze of age and chemo, I remember my life then as wonderful, if not exactly carefree. Whatever problems I had have been softened and smoothed with time. I was unmarried (oops) and had the most beautiful, busy, and sensitively charming child you could ever hope to meet. Yet of course, with no financial support, money was always a struggle: I do remember that. I'd been a night bartender, a job I could no longer do with a child as it's impossible to find childcare in the evening, and daytime bartenders don't make enough to pay for childcare. I stayed home with my son until he was nearly 3, living on very little. To pay my way I did odd jobs, (some very odd). I borrowed money from my dad, and became incredibly frugal, which is not my nature. At all.
When he was almost 3 and the money situation became intolerable, I went back to school and lived on student loans - which I only paid off recently. My rental home was in a beautiful part of Sacramento - full of tiny craftsmen bungalows and mature, leafy trees creating a canopy over the streets. To this day, it is a very desirable neighborhood despite the small scale of the homes.
One of the many odd jobs I had was delivering flyers. Yes, I was one of those people who make you angry by littering on your property and whom you have to clean up after. I no longer remember what the advertisements were for, but they weren't pizza door hangers, they were full sheets of paper. I would get the flyers and rubber bands the day before I was to deliver them, usually about 500 pieces of paper. After my son went to bed, I'd turn on the TV and roll them all up tight (the better for tossing) and secure them with a rubber band. The next day, I'd pop them in plastic bags and hang them from the handles of the umbrella stroller, along with snacks for my son. I'd put my sunny blonde boy in to balance the weight, then off we'd go for a day of work. For delivering flyers within the zip code requested, I received 5 cents a flyer, cash, which I thought was pretty good pay. I was a fast walker. I could make 25 dollars a day, although getting a job every day was not always possible.
Through sun and wind, my son and I would walk through Sacramento neighborhoods; viewing roses and azaleas, oaks and mulberry trees, tripping over lifted sidewalks, stopping to inspect an interesting bug or beautiful leaf. I'd imagine which house I'd move into when money was less tight, and liked the McKinley Park neighborhood the best. I walked through rich neighborhoods, which cost me dollars as the homes were too far apart and would lengthen my delivery time. Poor ones were better for me financially, but often I'd be looked at with suspicion because people were home and none to happy to see a stranger approach their property. My son was my saving grace - most people left me alone because of him. Back then, they didn't have the new subdivisions where houses are inches apart, nor did they have GPS, so I'd have to be speedy to get my flyers delivered and know the best routes.
Day after day, my son and I would walk (and roll) past beautiful landscaping and barking dogs. We'd get wet from sprinklers or crunch through leaves. The wheels on his stroller took a beating as we'd go over walkways and lawns to find a delivery spot. We'd encounter nice people and suspicious ones. We'd enjoy the weather or get soaked from the rain. I'd try to leave each flyer in a place respectful to the homeowner and fast for me.
Flyers depleted, we would eventually reach a park where I could set my boy free to run and let him burn off some of his considerable energy. There are parks everywhere in Sacramento, and I never had to search to find one. He no longer remembers this but it is one of my fondest times of life. I do remember the struggle to feed him, but more, I remember the hours spent in his presence, sun glinting off his hair, his happy smile and cries of "Watch me, mommy!" I loved being a mother - his mother - and would do it all over again.
On the end of the street near my house, there was literally a "corner store" like you see in movies. Unlike most convenience stores, there was no parking lot, no flashing beer signs. Just a simple store where neighbors could pick up things they'd forgotten on shopping trips. Bananas, candy, bread. I would regularly go there when I needed a small item and didn't want to put my kid in a carseat and drive. As my son grew older in that house, his goal was to be able to walk there by himself. I think I finally let him when he was about 6, me trailing behind, hidden, in case anything happened.
It was to this store I was walking one day, needing milk or something one late afternoon. I'd counted my change and dug through the couch, and had just barely enough, as usual. I walked to the corner, light flickering through the leaves overhead, sidewalk rumbling under the stroller tires, the afternoon light fading amber as it filtered through the trees.
I ran into a woman who had a child the same age as my son, also picking up something at the store. She said hello to me, instantly recognizing our commonality. Being a reserved person, I just smiled and prepared to go on my way, but she started chatting and asking me questions, and it turned out she lived across the alley behind me. Within minutes she had invited me to her house for a drink.
My reading material of choice back in those days was True Crime. Apparently, being a poor single mother wasn't frightening enough; I had to add gruesome murders to my nightly entertainment. So when she invited me, a complete stranger, over to her house, my first thought was, "She could be a serial killer. If I go over there, she could murder us both."
I looked into her very large, sparkling hazel eyes, noted her well-kept brown hair and groomed appearance (I was a mess in a tee shirt, jeans, flip flops with my nails undone). Her handsome son was the same age as my own, and I thought they could be friends. I decided if it came down to it, I could take her. So to her house I went.
And so began a friendship spanning 25 years. Like with all relationships, there have been ups and downs, good and bad. We have many differences; she is religious, I am not. She loves home decorating and repairing and building stuff - I am too lazy. She loves flowers and I have a black thumb. Her parenting philosophy is different than mine; hers is more biblically-based I suppose, and mine comes from psychology books, but the truth is, the similarities outweigh our differences. We both love our kids; we both love raising kids. We had similar, cold, mothers, and we both have very silly senses of humor. We both like clothes and makeup and girly stuff. We laugh a lot. She is the person who I just went to visit in Utah, and she has come to see me. We have both aged, of course, but she remains as she was back then: funny, welcoming, open, most importantly, not a serial killer. She's still quite beautiful for a woman older than me!
She is a bright spirit.
As friends do, we have discussed most things in our lives, which have taken different courses. There are times I've had more money and times she's had more, and there are times when she's been through tough things and times I have. She has been with me as I have faced cancer and I was there as she faced marital abuse. She is the woman I wrote about who came to decorate my bedroom so I would have a nice place to spend my final days. She never shied away from the difficult conversations, which made me love her all the more.
One day, back when I was sicker than I am today, I asked her what it was like for her to know her best friend didn't have much time left. I asked her to write a blog post for me.
She said that no matter what she wrote, it came out maudlin and depressing, which I understand. It is hard to stay away from maudlin when facing a terminal illness, as you can see by any movie on the subject. Neither she nor I are really into sentimentality and the cheesy take on life.
After our last visits, she took a different approach - a humorous one. One might call it gallows humor, which as you know I love. I think in reading it, you will see why we are friends.
TIPS FOR WHEN YOUR BFF IS DIAGNOSED WITH CANCER
by Alexus P.
FRIEND FIRST, CANCER PATIENT SECOND
If your friend is diagnosed with cancer, what do you do? Run away? Stop being friends? Cry? Get hysterical? NO! The very first thing you do is get dibs on her closet (if she is a fashionista - which MY friend is) and any furniture you want that her husband hates. No kidding, that's the first thing you do. You must establish your right to these things - even before you know what kind of cancer she has, if it is treatable or any other pertinent information. Establish that you get first pick of every and anything. You might even be able to go so far as to march right into her closet and make selections while she lies in the bed, too sick to move, protest or fight you off. Do it before she can get out of bed and lock the door effectively keeping you out. In fact, if you're smarter than I am, you'll probably have your friend make you a key to her house so you can march right in and help yourself - maybe while she is out having chemo and her husband and children are gone. Geez, why didn't I think of this earlier?
Don't forget things like shoes, handbags, jewelry, and her newly acquired wigs. She's never going to wear those wigs anyway - they are much too scratchy and uncomfortable with a bald head and you have all that hair to keep the wig from actually touching your scalp.
Next on the list - make sure that someone will notify you upon your friend's death so you don't have to read it in the newspaper. The sooner you know, the sooner you can start wearing her clothes. Now, some people might look down on you saying you're an opportunist. Maybe. Maybe not. Depends on just how good of a friend you were! I mean, if after you finished picking over her closet, if you held a bowl for her to puke in and then gave her a cool cloth for her forehead or sat with her while she was ill; colored pictures with her when she only had enough strength to do lame things, then you might be okay. I never did any of those things.... so maybe I'm an opportunist.
Seriously though, just because your friend has been diagnosed with cancer, the friendship doesn't end. Not if it's real. This is the time when your friendship is tested. In my case, I have tried to be supportive and understanding while watching my best friend decline. I've worried from a distance because we don't live close to each other. I've waited for news on blog posts, status updates and tweets. I've prayed and I've cried. I try not to think about the time when my friend will no longer be only a phone call or a text away. The one thing I will never do, is forget our friendship - this is something I will cherish a lifetime.
For now, my friend has a reprieve and we can both breath a little easier while we wait (hopefully 20+ years) for the other shoe to drop.... and hopefully it will be, at the very least, a Christian Louboutin. We both deserve that!
In the words of Bruno Mars:
Oh uh-huh
If you ever find yourself stuck in the middle of the sea
I'll sail the world to find you
If you ever find yourself lost in the dark and you can't see
I'll be the light to guide you
Find out what we're made of
When we are called to help our friends in need
You can count on me like 1, 2, 3
I'll be there
And I know when I need it
I can count on you like 4, 3, 2
You'll be there
'Cause that's what friends are supposed to do, oh yeah
Ooooooh, oooohhh yeah, yeah
If you're tossin' and you're turnin'
And you just can't fall asleep
I'll sing a song beside you
And if you ever forget how much you really mean to me
Every day I will remind you
Oooh
Find out what we're made of
When we are called to help our friends in need
You can count on me like 1, 2, 3
I'll be there
And I know when I need it
I can count on you like 4, 3, 2
You'll be there
'Cause that's what friends are supposed to do, oh yeah
Ooooooh, oooohhh yeah, yeah
You'll always have my shoulder when you cry
I'll never let go, never say goodbye
You know...
You can count on me like 1, 2, 3
I'll be there
And I know when I need it
I can count on you like 4, 3, 2
You'll be there
'Cause that's what friends are supposed to do, oh yeah
Ooooooh, oooohhh
You can count on me [AND] I can count on you.
FYI: She did abscond with my wigs, some of my bags and I agree she has dibs on any of my clothes she wants. More importantly, she did sit with me and color with my Spectrum Noir markers - and I didn't even know she thought it was lame!
But you know what she left out? Dibs on my husband. Maybe we talk a little tooooo much.
When he was almost 3 and the money situation became intolerable, I went back to school and lived on student loans - which I only paid off recently. My rental home was in a beautiful part of Sacramento - full of tiny craftsmen bungalows and mature, leafy trees creating a canopy over the streets. To this day, it is a very desirable neighborhood despite the small scale of the homes.
One of the many odd jobs I had was delivering flyers. Yes, I was one of those people who make you angry by littering on your property and whom you have to clean up after. I no longer remember what the advertisements were for, but they weren't pizza door hangers, they were full sheets of paper. I would get the flyers and rubber bands the day before I was to deliver them, usually about 500 pieces of paper. After my son went to bed, I'd turn on the TV and roll them all up tight (the better for tossing) and secure them with a rubber band. The next day, I'd pop them in plastic bags and hang them from the handles of the umbrella stroller, along with snacks for my son. I'd put my sunny blonde boy in to balance the weight, then off we'd go for a day of work. For delivering flyers within the zip code requested, I received 5 cents a flyer, cash, which I thought was pretty good pay. I was a fast walker. I could make 25 dollars a day, although getting a job every day was not always possible.
Through sun and wind, my son and I would walk through Sacramento neighborhoods; viewing roses and azaleas, oaks and mulberry trees, tripping over lifted sidewalks, stopping to inspect an interesting bug or beautiful leaf. I'd imagine which house I'd move into when money was less tight, and liked the McKinley Park neighborhood the best. I walked through rich neighborhoods, which cost me dollars as the homes were too far apart and would lengthen my delivery time. Poor ones were better for me financially, but often I'd be looked at with suspicion because people were home and none to happy to see a stranger approach their property. My son was my saving grace - most people left me alone because of him. Back then, they didn't have the new subdivisions where houses are inches apart, nor did they have GPS, so I'd have to be speedy to get my flyers delivered and know the best routes.
Day after day, my son and I would walk (and roll) past beautiful landscaping and barking dogs. We'd get wet from sprinklers or crunch through leaves. The wheels on his stroller took a beating as we'd go over walkways and lawns to find a delivery spot. We'd encounter nice people and suspicious ones. We'd enjoy the weather or get soaked from the rain. I'd try to leave each flyer in a place respectful to the homeowner and fast for me.
Flyers depleted, we would eventually reach a park where I could set my boy free to run and let him burn off some of his considerable energy. There are parks everywhere in Sacramento, and I never had to search to find one. He no longer remembers this but it is one of my fondest times of life. I do remember the struggle to feed him, but more, I remember the hours spent in his presence, sun glinting off his hair, his happy smile and cries of "Watch me, mommy!" I loved being a mother - his mother - and would do it all over again.
On the end of the street near my house, there was literally a "corner store" like you see in movies. Unlike most convenience stores, there was no parking lot, no flashing beer signs. Just a simple store where neighbors could pick up things they'd forgotten on shopping trips. Bananas, candy, bread. I would regularly go there when I needed a small item and didn't want to put my kid in a carseat and drive. As my son grew older in that house, his goal was to be able to walk there by himself. I think I finally let him when he was about 6, me trailing behind, hidden, in case anything happened.
It was to this store I was walking one day, needing milk or something one late afternoon. I'd counted my change and dug through the couch, and had just barely enough, as usual. I walked to the corner, light flickering through the leaves overhead, sidewalk rumbling under the stroller tires, the afternoon light fading amber as it filtered through the trees.
I ran into a woman who had a child the same age as my son, also picking up something at the store. She said hello to me, instantly recognizing our commonality. Being a reserved person, I just smiled and prepared to go on my way, but she started chatting and asking me questions, and it turned out she lived across the alley behind me. Within minutes she had invited me to her house for a drink.
My reading material of choice back in those days was True Crime. Apparently, being a poor single mother wasn't frightening enough; I had to add gruesome murders to my nightly entertainment. So when she invited me, a complete stranger, over to her house, my first thought was, "She could be a serial killer. If I go over there, she could murder us both."
I looked into her very large, sparkling hazel eyes, noted her well-kept brown hair and groomed appearance (I was a mess in a tee shirt, jeans, flip flops with my nails undone). Her handsome son was the same age as my own, and I thought they could be friends. I decided if it came down to it, I could take her. So to her house I went.
And so began a friendship spanning 25 years. Like with all relationships, there have been ups and downs, good and bad. We have many differences; she is religious, I am not. She loves home decorating and repairing and building stuff - I am too lazy. She loves flowers and I have a black thumb. Her parenting philosophy is different than mine; hers is more biblically-based I suppose, and mine comes from psychology books, but the truth is, the similarities outweigh our differences. We both love our kids; we both love raising kids. We had similar, cold, mothers, and we both have very silly senses of humor. We both like clothes and makeup and girly stuff. We laugh a lot. She is the person who I just went to visit in Utah, and she has come to see me. We have both aged, of course, but she remains as she was back then: funny, welcoming, open, most importantly, not a serial killer. She's still quite beautiful for a woman older than me!
She is a bright spirit.
As friends do, we have discussed most things in our lives, which have taken different courses. There are times I've had more money and times she's had more, and there are times when she's been through tough things and times I have. She has been with me as I have faced cancer and I was there as she faced marital abuse. She is the woman I wrote about who came to decorate my bedroom so I would have a nice place to spend my final days. She never shied away from the difficult conversations, which made me love her all the more.
One day, back when I was sicker than I am today, I asked her what it was like for her to know her best friend didn't have much time left. I asked her to write a blog post for me.
She said that no matter what she wrote, it came out maudlin and depressing, which I understand. It is hard to stay away from maudlin when facing a terminal illness, as you can see by any movie on the subject. Neither she nor I are really into sentimentality and the cheesy take on life.
After our last visits, she took a different approach - a humorous one. One might call it gallows humor, which as you know I love. I think in reading it, you will see why we are friends.
TIPS FOR WHEN YOUR BFF IS DIAGNOSED WITH CANCER
by Alexus P.
FRIEND FIRST, CANCER PATIENT SECOND
If your friend is diagnosed with cancer, what do you do? Run away? Stop being friends? Cry? Get hysterical? NO! The very first thing you do is get dibs on her closet (if she is a fashionista - which MY friend is) and any furniture you want that her husband hates. No kidding, that's the first thing you do. You must establish your right to these things - even before you know what kind of cancer she has, if it is treatable or any other pertinent information. Establish that you get first pick of every and anything. You might even be able to go so far as to march right into her closet and make selections while she lies in the bed, too sick to move, protest or fight you off. Do it before she can get out of bed and lock the door effectively keeping you out. In fact, if you're smarter than I am, you'll probably have your friend make you a key to her house so you can march right in and help yourself - maybe while she is out having chemo and her husband and children are gone. Geez, why didn't I think of this earlier?
Don't forget things like shoes, handbags, jewelry, and her newly acquired wigs. She's never going to wear those wigs anyway - they are much too scratchy and uncomfortable with a bald head and you have all that hair to keep the wig from actually touching your scalp.
Next on the list - make sure that someone will notify you upon your friend's death so you don't have to read it in the newspaper. The sooner you know, the sooner you can start wearing her clothes. Now, some people might look down on you saying you're an opportunist. Maybe. Maybe not. Depends on just how good of a friend you were! I mean, if after you finished picking over her closet, if you held a bowl for her to puke in and then gave her a cool cloth for her forehead or sat with her while she was ill; colored pictures with her when she only had enough strength to do lame things, then you might be okay. I never did any of those things.... so maybe I'm an opportunist.
Seriously though, just because your friend has been diagnosed with cancer, the friendship doesn't end. Not if it's real. This is the time when your friendship is tested. In my case, I have tried to be supportive and understanding while watching my best friend decline. I've worried from a distance because we don't live close to each other. I've waited for news on blog posts, status updates and tweets. I've prayed and I've cried. I try not to think about the time when my friend will no longer be only a phone call or a text away. The one thing I will never do, is forget our friendship - this is something I will cherish a lifetime.
For now, my friend has a reprieve and we can both breath a little easier while we wait (hopefully 20+ years) for the other shoe to drop.... and hopefully it will be, at the very least, a Christian Louboutin. We both deserve that!
In the words of Bruno Mars:
Oh uh-huh
If you ever find yourself stuck in the middle of the sea
I'll sail the world to find you
If you ever find yourself lost in the dark and you can't see
I'll be the light to guide you
Find out what we're made of
When we are called to help our friends in need
You can count on me like 1, 2, 3
I'll be there
And I know when I need it
I can count on you like 4, 3, 2
You'll be there
'Cause that's what friends are supposed to do, oh yeah
Ooooooh, oooohhh yeah, yeah
If you're tossin' and you're turnin'
And you just can't fall asleep
I'll sing a song beside you
And if you ever forget how much you really mean to me
Every day I will remind you
Oooh
Find out what we're made of
When we are called to help our friends in need
You can count on me like 1, 2, 3
I'll be there
And I know when I need it
I can count on you like 4, 3, 2
You'll be there
'Cause that's what friends are supposed to do, oh yeah
Ooooooh, oooohhh yeah, yeah
You'll always have my shoulder when you cry
I'll never let go, never say goodbye
You know...
You can count on me like 1, 2, 3
I'll be there
And I know when I need it
I can count on you like 4, 3, 2
You'll be there
'Cause that's what friends are supposed to do, oh yeah
Ooooooh, oooohhh
You can count on me [AND] I can count on you.
But you know what she left out? Dibs on my husband. Maybe we talk a little tooooo much.
 |
| About 1990 |
 |
| 2014 |
Sunday, August 17, 2014
Five years......
What can happen in five years?
A silly, long-haired 12 year old boy grows to become a lanky, bespectacled, scary-smart 6 foot tall man, packing for the start of his elite university education and possible career as a scientist. A young man, 22, struggles in a low paying retail job until he too attends school, gains a fiance, now has a career rather than a job and a bright, solid future ahead. A husband gets a little more slumped, a bit more grey, worry lines mixed with smile lines, but he retires from his own career and gets to play a little more golf and watch a whole lot of baseball. One stepdaughter finds her own sort of family and career success. Another marries, grows more beautiful by the day, has a baby. And as the first of a new generation is born, the hopes of a crazy, disparate family are joined together, glued by that smiling, giggling baby face.
What will he see in his lifetime? It will surely be amazing.
But really, I'm glad he doesn't have my genetics.
And, me? I am still here. I have made it to the five year mark, as only 30% of women with metastatic cancer do.
I sat on an exam table half a decade ago and heard the words, "you have cancer." And I have sat on exam tables hundreds of times since. That paper rustling under my butt is now the sound of "home." Did I have metastatic cancer back then? We'll never know, but it is likely I did.
August 17, 2009: if I had thought to five years ahead (which as an ADD woman I didn't) I guess I would have felt this blog would be long abandoned, left for other early stage women to find and discover what I experienced, eventually to deteriorate with neglect. I thought my husband and I would still be working, paying for my son's college (we did suspect he would go to a top five university - we got that part right). I never doubted that cancer would be a mere blip in my life, and I would be back to normal, working in a school, meeting new kids, laughing with teachers, calming the parents, and fixing the damn copier at least a hundred times a year.
(Why can't teachers take care of copiers?)
But then cancer was discovered in my liver, and my life as I knew it, and my future ended. It took a while to regroup and redefine myself. Who am I now?
A person without a job, a purpose, a future is .... what?
These five years have been dominated by disease. Having cancer is a full time job in itself, and I hung on to my employment by my fingertips, but eventually, I had to open my fingers and drop. I was too weak from treatment to work and even if I had not been, just the sheer number of appointments would have made any employer rightfully throw me out the door.
In five years, there are 260 weeks. I would estimate I had about 200 doctors appointments, considering primary care, oncology, surgeons, plastic surgeons, radiation oncologist, infectious disease specialist. Additionally, I would guess that I've had 20 MUGAs, 50 CTs, 10 PETs, a bone scan here and there. There were more weeks than not that I've had two appointments. I've had mastectomy, reconstruction, port placement, liver resection and ablation, fiducial placement and SBRT. I estimate I have sat in the chemo room over 150 times, watching the drip, drip, drip of one of the 7 different chemos, 3 targeted therapies, and dozens of other drugs to keep me from barfing, or awake, or feeling pain, or anxiety.
Being metastatic, this five year mark does not mean anything special. For the 80% of women with early stage ER+ cancer, the five year mark is the date that the odds of relapse drop dramatically at - it becomes the time where you are more likely to be in the winners bracket than not. (For HER2+ women, because the cancer is so aggressive, it's 3 years. I didn't even make it to 2).
So for me, it's just a day like any other day.
And yet, over the past few years I've had to redefine myself. And, I am still doing it. My job as mother will be mostly over when my son leaves for college although it has been half-assed for the past few years anyway. I'm lucky I had the kind of kid who was self-sufficient. I can no longer work in any real way again, as I continue with the ups and downs of treatment. I have two drugs infused every 3 weeks, and another infused every month, one which causes severe anemia. That means I'm sick and exhausted for a week, recovering for a week, feeling good for a week and then I start all over. I can't be housewife, as I'm too tired. I felt good a week ago and took all the stuff out of the bathroom cabinets. I had treatment. Now it's on the floor where I left it.
Friend is difficult unless you catch me in the right week and I don't try hard because, like every ADD person, I believe the day I am today is the way I am forever.
Planning is not my forte.
I am a very good sleeper. My cat likes me a lot.
Of course, I'm very happy - this day is not one I was sure I'd see. I never wanted to die although I accept it as a fact of life. But it seems farther away now.
There were signs I could get lucky: my cancer did not respond well to all of those chemos and yet it also never spread beyond the liver. Like me, it was lazy. When we cut out half my liver to get rid of it, it got mad and grew back, but then it didn't keep growing and spreading. It grew just enough to say "F you" and then stop. My blood took the hit of all the treatments, and so my doctor decided to attack it locally again: with SBRT radiation. At the same time, we started Perjeta which does affect my blood but is a surprise gift. That one-two punch, though, put me in remission and here I am, five years from the day I heard the fateful words, and now expecting to be where I was at the beginning:
Cancer-free, yet wondering when it will return.
Unlike those with early stage cancer, the odds are extremely good that it will return - in the 98% range. But the addition of perjeta makes that number a mystery. It's too new a drug. Nobody knows how long it will work, or what it will do to me if I stay on it long-term. We are in no-mans land here.
Once again, I'm an early adopter.
I have had to redefine myself. Sadly, I am what I never wanted to be: I am now a cancer patient above all. Unfortunately, there is no chance you can have as many appointments, as many interactions with cancer, or a body that is continually assaulted with therapy as I am without it becoming part of you.
So, I am wife, mother, cancer patient and not in that order. Hopefully, I am the kind of cancer patient who helps others as they experience cancer. So I answer every email I get, every facebook contact and try to be encouraging. All I can do now is make the best of a bad situation. The idea I had five years ago, that I would experience it and move past it - it seems very unlikely today.
You never know. Maybe someday I will get to redefine myself again. Life is a continuous process of growth and change. But for today, I am a metastatic cancer patient who has lived five years with the cancer, and I hope to help others. Maybe that's my ultimate purpose.
That's the best I can do.
A silly, long-haired 12 year old boy grows to become a lanky, bespectacled, scary-smart 6 foot tall man, packing for the start of his elite university education and possible career as a scientist. A young man, 22, struggles in a low paying retail job until he too attends school, gains a fiance, now has a career rather than a job and a bright, solid future ahead. A husband gets a little more slumped, a bit more grey, worry lines mixed with smile lines, but he retires from his own career and gets to play a little more golf and watch a whole lot of baseball. One stepdaughter finds her own sort of family and career success. Another marries, grows more beautiful by the day, has a baby. And as the first of a new generation is born, the hopes of a crazy, disparate family are joined together, glued by that smiling, giggling baby face.
What will he see in his lifetime? It will surely be amazing.
But really, I'm glad he doesn't have my genetics.
And, me? I am still here. I have made it to the five year mark, as only 30% of women with metastatic cancer do.
I sat on an exam table half a decade ago and heard the words, "you have cancer." And I have sat on exam tables hundreds of times since. That paper rustling under my butt is now the sound of "home." Did I have metastatic cancer back then? We'll never know, but it is likely I did.
August 17, 2009: if I had thought to five years ahead (which as an ADD woman I didn't) I guess I would have felt this blog would be long abandoned, left for other early stage women to find and discover what I experienced, eventually to deteriorate with neglect. I thought my husband and I would still be working, paying for my son's college (we did suspect he would go to a top five university - we got that part right). I never doubted that cancer would be a mere blip in my life, and I would be back to normal, working in a school, meeting new kids, laughing with teachers, calming the parents, and fixing the damn copier at least a hundred times a year.
(Why can't teachers take care of copiers?)
But then cancer was discovered in my liver, and my life as I knew it, and my future ended. It took a while to regroup and redefine myself. Who am I now?
A person without a job, a purpose, a future is .... what?
These five years have been dominated by disease. Having cancer is a full time job in itself, and I hung on to my employment by my fingertips, but eventually, I had to open my fingers and drop. I was too weak from treatment to work and even if I had not been, just the sheer number of appointments would have made any employer rightfully throw me out the door.
In five years, there are 260 weeks. I would estimate I had about 200 doctors appointments, considering primary care, oncology, surgeons, plastic surgeons, radiation oncologist, infectious disease specialist. Additionally, I would guess that I've had 20 MUGAs, 50 CTs, 10 PETs, a bone scan here and there. There were more weeks than not that I've had two appointments. I've had mastectomy, reconstruction, port placement, liver resection and ablation, fiducial placement and SBRT. I estimate I have sat in the chemo room over 150 times, watching the drip, drip, drip of one of the 7 different chemos, 3 targeted therapies, and dozens of other drugs to keep me from barfing, or awake, or feeling pain, or anxiety.
Being metastatic, this five year mark does not mean anything special. For the 80% of women with early stage ER+ cancer, the five year mark is the date that the odds of relapse drop dramatically at - it becomes the time where you are more likely to be in the winners bracket than not. (For HER2+ women, because the cancer is so aggressive, it's 3 years. I didn't even make it to 2).
So for me, it's just a day like any other day.
And yet, over the past few years I've had to redefine myself. And, I am still doing it. My job as mother will be mostly over when my son leaves for college although it has been half-assed for the past few years anyway. I'm lucky I had the kind of kid who was self-sufficient. I can no longer work in any real way again, as I continue with the ups and downs of treatment. I have two drugs infused every 3 weeks, and another infused every month, one which causes severe anemia. That means I'm sick and exhausted for a week, recovering for a week, feeling good for a week and then I start all over. I can't be housewife, as I'm too tired. I felt good a week ago and took all the stuff out of the bathroom cabinets. I had treatment. Now it's on the floor where I left it.
Friend is difficult unless you catch me in the right week and I don't try hard because, like every ADD person, I believe the day I am today is the way I am forever.
Planning is not my forte.
I am a very good sleeper. My cat likes me a lot.
Of course, I'm very happy - this day is not one I was sure I'd see. I never wanted to die although I accept it as a fact of life. But it seems farther away now.
There were signs I could get lucky: my cancer did not respond well to all of those chemos and yet it also never spread beyond the liver. Like me, it was lazy. When we cut out half my liver to get rid of it, it got mad and grew back, but then it didn't keep growing and spreading. It grew just enough to say "F you" and then stop. My blood took the hit of all the treatments, and so my doctor decided to attack it locally again: with SBRT radiation. At the same time, we started Perjeta which does affect my blood but is a surprise gift. That one-two punch, though, put me in remission and here I am, five years from the day I heard the fateful words, and now expecting to be where I was at the beginning:
Cancer-free, yet wondering when it will return.
Unlike those with early stage cancer, the odds are extremely good that it will return - in the 98% range. But the addition of perjeta makes that number a mystery. It's too new a drug. Nobody knows how long it will work, or what it will do to me if I stay on it long-term. We are in no-mans land here.
Once again, I'm an early adopter.
I have had to redefine myself. Sadly, I am what I never wanted to be: I am now a cancer patient above all. Unfortunately, there is no chance you can have as many appointments, as many interactions with cancer, or a body that is continually assaulted with therapy as I am without it becoming part of you.
So, I am wife, mother, cancer patient and not in that order. Hopefully, I am the kind of cancer patient who helps others as they experience cancer. So I answer every email I get, every facebook contact and try to be encouraging. All I can do now is make the best of a bad situation. The idea I had five years ago, that I would experience it and move past it - it seems very unlikely today.
You never know. Maybe someday I will get to redefine myself again. Life is a continuous process of growth and change. But for today, I am a metastatic cancer patient who has lived five years with the cancer, and I hope to help others. Maybe that's my ultimate purpose.
That's the best I can do.
Monday, August 11, 2014
Time to Vote For ME to Speak at SXSW
I have been entered to speak at a panel at SXSW (South by Southwest) which is a huge technology/music/film conference in Austin, Texas. You might remember, Lady Gaga was the keynote speaker last year, Edward Snowden Skyped in from wherever he is in Russia, and there was a big car accident out front that killed some people.
Yes, that conference, now do you remember? :) Little old me, talking about the State of Cancer Care in 2014 at SXSW. I'll be totally terrified but whatever, I am surviving metastatic cancer, what could be scarier than that?
I will do this in partnership with Healthline. I'm very excited at the thought.
Unfortunately, I will only be able to do it one way, and that is if you vote that you would like to see me there.
Topics we will cover include:
What challenges do cancer patients face?
What role does patient empowerment play in improving cancer care and the cancerjourney experience?
What impact does digital innovation have on cancer care?
What are some of the digital innovations that are making a difference in cancer care and patient empowerment today?
What do we need to change to find a cure?
I am probably going to include a little pink hate and metastatic love in my topic.
To vote, you have to register. But never fear, SXSW promises that your sign-up information will remain completely confidential.
Start by going here:
https://auth.sxsw.com/users/sign_in
Create your account.
They will send you a confirmation email. Once you click on confirm, you can vote for me here:
http://panelpicker.sxsw.com/vote/40477
Click the thumbs up icon to the left and drop by and leave me a comment. Answer some of the above questions in the comments so I can include your viewpoint in my talk.
We are filming a new video next weekend to better explain the topic so they put that video of me discussing chemo side effects in as a placeholder. Pay it no never mind. :)
Vote!! Vote! Vote early, vote often and get me to Austin!
Yes, that conference, now do you remember? :) Little old me, talking about the State of Cancer Care in 2014 at SXSW. I'll be totally terrified but whatever, I am surviving metastatic cancer, what could be scarier than that?
I will do this in partnership with Healthline. I'm very excited at the thought.
Unfortunately, I will only be able to do it one way, and that is if you vote that you would like to see me there.
Topics we will cover include:
What challenges do cancer patients face?
What role does patient empowerment play in improving cancer care and the cancer
What impact does digital innovation have on cancer care?
What are some of the digital innovations that are making a difference in cancer care and patient empowerment today?
What do we need to change to find a cure?
I am probably going to include a little pink hate and metastatic love in my topic.
To vote, you have to register. But never fear, SXSW promises that your sign-up information will remain completely confidential.
Start by going here:
https://auth.sxsw.com/users/sign_in
Create your account.
They will send you a confirmation email. Once you click on confirm, you can vote for me here:
http://panelpicker.sxsw.com/vote/40477
Click the thumbs up icon to the left and drop by and leave me a comment. Answer some of the above questions in the comments so I can include your viewpoint in my talk.
We are filming a new video next weekend to better explain the topic so they put that video of me discussing chemo side effects in as a placeholder. Pay it no never mind. :)
Vote!! Vote! Vote early, vote often and get me to Austin!
Wednesday, August 6, 2014
Stable vs Remission vs NED vs Cure
Every type of cancer has its own terminology; a type of shorthand in which patients use to communicate with each other, and it seems I have accidentally cross-pollinated two common phrases. The garden is still just as beautiful but the bees buzzing around are slightly confused, so maybe I need to explain.
In Breast Cancer World, when we are done with treatment and cancer is not visible to any scanning machine, we say we are NED.
In Other Cancer Type World, (like leukemia) the terminology used most often is Remission.
The National Cancer Institute's definition of Remission is, "A decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body."
NED, of course, is, "No evidence of disease." You can't see cancer on scans or in blood, but that doesn't mean it isn't there.
They mean the exact same thing.
Cure means one is restored to health, their disease never to return.
While we are on the subject of definitions, Stable is when your cancer is unchanged from one scan to another. It is still there, but it hasn't grown or spread.
I'm not sure why breast cancer patients chose the phrase NED to relate to, except that it's fun to say we are "dancing with Ned." It's not exactly accurate if you think about it, because even if we spend the rest of our lives on the dance floor, there will always be evidence of our disease. If not physical scars, (and who gets away without those?) there are the emotional ones (which nobody escapes). To me, NED is hardly accurate, which may be why I relate more to the word remission.
But it has caused a lot of confusion. I have gotten numerous emails and facebook messages from kind people concerned that I am misunderstanding my place in CancerLand. I'm getting questions like, "If you had terminal cancer, how can it be gone?" "Why do you think you are in remission instead of NED?" "I don't want you to be worried, but your cancer might come back, so you aren't in remission."
Clearly, people think remission means cure. And, one very nice women told me her oncologist had suggested a difference between NED and remission and was worried about my optimism, so now even I am wondering if I am wrong in my word choice.
I might be using the wrong word, but I understand my odds for staying cancer-free and they are certainly long, but not impossible. According to the California Breast Cancer Research Program, "At Stage IV, the disease is no longer considered curable, with the exception of the estimated 1-3 percent of patients who, for unknown reasons, experience longterm survival with stable disease or complete remission following treatment." I am cautious. I have already experienced the disappointment of thinking I was in that small percentage. After my liver resection, I rejoiced that I was cancer-free and was sure that it would not come back.
Of course, it did. That was a pretty shattering disappointment, and I am not going to let it happen again. Like the old cliche, I hope for the best but am prepared for the worst.
As a women with metastatic cancer - cancer that has already proven that it likes to travel - I have to be realistic. There may be cancer cells floating through my body right now, some sending out invitations for a gathering, others buying presents and housewarming gifts ready to get together in a new location. In fact, just like when you leave a teenager alone for the weekend, there is a 98% chance of party. When the festivities get too big, the cops will be called to the area and the bash will be busted.
By being declared NED, or in Remission, I have merely been given the hope, the chance, the fleeting idea that I could be in the 1-3% and be rid of this disease. My doctor said there was that possibility.
An Oncologist saying something like that to a person with metastatic breast cancer is along the lines of hearing a the Lottery Commissioner say, "Yes, you won the PowerBall, you can pick up your $400 million dollar check next week."
It's magical.
Whatever word we choose - NED or Remission - there is the vapor of hope, not only for me, but for everybody with metastatic disease. Remember, the drug that got me to NED was not even around when I started treatment almost five years ago. There are many cancer drugs in the process of being developed.
Maybe one day, all of us can use the word we really want to use: CURE.
Sunday, August 3, 2014
The Wrong Approach to Breast Cancer (?)
Peggy Orenstein is brave enough to discuss the controversies in CancerLand, the ones we bloggers all tiptoe around because we don't want any feelings hurt. Her latest article in the New York Times has once again stirred people up and there have been angry and defensive responses.
But I'm going to stick up for her.
Basically, Peggy discusses a study published in the Journal of Clinical Oncology showing a massive jump in the number of women getting a prophylactic bilateral mastectomy among women with very low risk of recurrent disease, such as those with DCIS and without the BRCA gene. The numbers have also jumped in women with early stage invasive disease. This spike has happened despite numerous studies that show that there is no survival benefit for doing this type of surgery.
Peggy's article questions why we have regressed. The pendulum has swung from the radical Halsted Mastectomy which was highly disfiguring, to lumpectomy (breast conservation) as the desired surgery, and swung back to bilateral mastectomy, without the medical data that says this swingback trend is necessary. She concludes that overestimation of risk and potential regret are the motivating reasons that women have for choosing non-diseased breast removed and suggests that doctors reevaluate their treatment.
Unfortunately, the backlash to Peggy's questions have been fast and fierce and women believe they must defend their decision to do a double-mastectomy. But I believe the article is misunderstood. Peggy is not questioning a woman and her individual choice. She is questioning the medical community that has allowed this choice to become commonplace despite what medical data show.
Women reading this should not believe that questioning a medical approach is the same as questioning a human heart.
I can't say that enough. There is a difference between medical norms and data and the emotional life of women facing a crisis, and somewhere in between those two things is where the problem must be solved.
Choosing a bilateral mastectomy when cancer is only in one breast is completely understandable to me, and I think to Peggy. We've both been there, although she remains early stage and I am metastatic. We both chose to save one of our breasts but that doesn't mean we don't understand the emotions of cancer, or think negatively of those who made a different decision.
My choice not to remove my healthy breast was no less emotional than anybody else's. I didn't want to lose my breasts, pure and simple. I wanted sensation - I wanted to feel my future grandchild's head against my chest. I had test after test hoping to save my cancerous side, yearning for a lumpectomy. When it was impossible, then I didn't want to lose two. It was as simple as that. My decision was based on emotions, same as anybody else's. Not statistics, not logic or reason. So I get it.
Peggy mentions a cockroach in her article that brought back a memory: when I was a child, my mother was doing laundry in the garage. She got an insect on her, which freaked her out. She began screaming "Get it off, get it off!" so loudly the neighbors came running. To my great embarrassment, she whirled around and ripped her shirt off, and ended up standing in the garage with only her white bra and skirt on. Well, that is exactly what you feel when you hear "you have cancer." Something terrorizing is on you, and all you want is to rip it out and neighbors be damned.
Enter the doctor.
What has always puzzled me is why doctors so readily agree to cut off a healthy body part. Not only agree, but sometimes encourage it. I was adamant that I wanted breast conserving surgery to whatever extent possible. Sadly, it turned that I had multicentric disease and needed a right-sided mastectomy. I was able to keep my left. My right has been gone 5 years now, bless her heart. I miss her.
However, when I saw my plastic surgeon, he seemed shocked that I was going to keep my healthy breast, and suggested I consider removing it for the ability to get a more even, "beautiful, " reconstruction. The shock he expressed went both ways - I couldn't believe he thought that I should amputate a perfectly healthy body part to comply with his idea of beauty.
It is also another double-standard. When a man gets testicular cancer on one side, he does not cut all his junk off "just in case." Cancer doesn't jump from ball to ball, nor does it jump from boob to boob. No man I've heard of ever makes the choice to remove them both. Yet, our poor girls, when one gets sick they often both have to go.
Why is this? How did this come about, and why have doctors so readily agreed to do what is essentially unnecessary surgery to remove a healthy body part? Would they do it if a man requested it? Is it because they, like my plastic surgeon, believe that it leads to beauty? Is this a form of paternalism? Do they think we will argue and so they just automatically give in without making their case? (That is, after all, the excuse they use for over-prescribing antibiotics, which is now fueling uncontrollable diseases, one of which nearly killed me.) Or do they not understand the risks themselves?
Of all people, doctors should know that breasts are not unnecessary warts on our bodies. They are part of our physique, posture, and bodily structure and while they are designed for feeding babies, once that job is done it does not mean they can be lopped off like too-long fingernails.
Physicians often don't tell you about the problems that are possible after mastectomy. I have suffered greatly from the mastectomy and issues with recon. I never had the infections that many get, but I have had difficulty with movement that continues to this day, nearly five years after the surgery. My chest and shoulder has been painful since the reconstruction; I've had frozen shoulder in it 3 times now. Cortisone shots have kept me functioning but I have permanently lost range of motion in my right arm, which means my baseball career is definitely over. The implant feels unnatural and painful. I have never been able to go back to sleeping on my stomach, which used to be my favorite position. My chest muscles are weak, as are my back muscles, and worst of all - for five freaking years I have had a maddening itch somewhere in there that I cannot scratch because it's completely numb. Phantom itching, it's called. I am so grateful I only removed my diseased breast - I can't imagine years of not being able to lift both arms, having itching on both sides, along with everything else that has happened to me.
Of course, I am me. I don't represent everybody and many do not have these issues. The point is, nobody ever told me that the above listed problems could occur, and in my years of blog writing and discussing this with other cancer patients, these problems are neither uncommon, nor are they brought up in doctor's offices when mastectomies are discussed. Many women don't even understand their chests will be forever numb. And, while my insurance has covered millions of dollars worth of treatments for me over the course of my metastatic disease (and I am very, very grateful) - it doesn't cover physical therapy which I do need. I'm on my own with that.
Cancer that is in the breast can't kill you, we know this. Doctors take it out of the breast or take off the breast for the purpose of preventing cancer from spreading to an area where it can kill you, such as lung, liver, brain or bone. Removing a breast that doesn't have cancer doesn't prevent spread.
If there is no cancer in the breast, why are doctors removing it? Don't they have to live by the "do no harm" ethos? I can attest that the possibility of harm exists.
There are, of course, cases in which it makes good medical and physical sense to remove the contralateral breast. Lobular cancer tends to relapse to the other side, and the BRCA gene means both must go.
I also do not discount symmetry as a reason for wanting a bilateral mastectomy. Women are hopefully going to be living a long time with this new chest, and so if evenness is more important than sensation, than that is a valid choice. Many women have problem breasts - too big, pendulous, uncomfortable and do not mind their removal. Psychological and comfort reasons can important too. There are women with anxiety disorders who will not do well having mammograms frequently post-breast cancer. In cases like that, removing the breast to spare them that anxiety is reasonable.
It's just that the above reasons don't explain the sheer numbers of women who are doing "prophy" bilaterals now for very early stage cancer. Talking to woman after woman, as I do, it's like they have never even considered the idea of leaving their healthy breast alone. It's an automatic - disease in one breast means remove them both. Their doctors don't seem to have even brought it up.
Sure, there is always that frightening story about the rare woman who had no evidence of cancer in one of her breasts, chose to do a bilateral and behold, in the path report cancer was found in the non-cancer breast. That is used as a warning to not take chances. That is certainly a nerve-wracking story but not necessarily one that a patient should base her own decision for breast amputation upon. It's a story a doctor should be able to put into perspective, and if necessary, use tests to calm those fears.
Yes, cancer is sneaky, as evidenced by my own early stage, node-negative cancer ending up in my liver. But in medicine, you can't go by scary stories, you have to go by data.
I can't help but feel that the pink gang has helped fuel the misunderstanding of the risks involved in having cancer return to the opposite side. Most women questioned in the study over-estimated their risks by quite a bit. We are not aware, we are hyper-aware, to the point of being seriously misinformed. The cynic in me says that you can't have a pink army collecting money for you if there is no driving fear that causes one to hold out the collection plate.
The truth is, there are many cases in which a double is not necessary. Medicine should not put that on patients alone to decide. We aren't qualified. We are afraid. We probably have never read a medical text in our lives, we don't understand the statistics or the Cochrane-Armitage Scale or what Cox Proportional Hazards are. We are going to die and leave our babies! We have way too much to learn and not enough time to learn it. It is only natural to say, "take them off" and believe it's the safest thing. We can hope that we will get "perky new boobs" like everybody tells us. Nobody can blame a woman for that, or any of the other reasons she may choose to do a bilateral
Every women who did a bilateral did it for reasons that made sense to her, and what's done is done. There is no point in going back and revisiting it. We all just do the best we can for the reasons we understood at the time.
But this doesn't explain why doctors are doing so many. They know the risks with mastectomy and recon, they know the problems, they understand the data - or they should.
We should not question a woman's private decision but it is appropriate to question the medical establishment and find out why they have allowed this surgery to become the norm when it is medically unnecessary. And that is all Peggy was doing.
Going forward in the future, for those newly diagnosed, I think it is incumbent on doctors - it is their sacred responsibility - to make sure a woman understands their individual risks of contralateral breast cancer and overall survival, balance their desire for symmetry in reconstruction with the medical risks, and yes, include their mental state including fear and worry. Then help her make an informed decision, as unemotionally as possible, knowing a womans first thought is often "get it off!" This may take some time, and a doctor may have to sit with her, hold her hand, pull out the paperwork and explain the odds. Maybe even return a phone call or two. And, remind a woman that a prophy can always be done at a later date - if anxiety gets to her, if her need for symmetry is not met after reconstruction or for any other reason - that is established law. But once it is done, there is no going back.
I'm not sure what the correct answer to balance these needs are, but removing a healthy body part doesn't seem like the best way to start. To me, it seems like a last resort.
But I'm going to stick up for her.
Basically, Peggy discusses a study published in the Journal of Clinical Oncology showing a massive jump in the number of women getting a prophylactic bilateral mastectomy among women with very low risk of recurrent disease, such as those with DCIS and without the BRCA gene. The numbers have also jumped in women with early stage invasive disease. This spike has happened despite numerous studies that show that there is no survival benefit for doing this type of surgery.
Peggy's article questions why we have regressed. The pendulum has swung from the radical Halsted Mastectomy which was highly disfiguring, to lumpectomy (breast conservation) as the desired surgery, and swung back to bilateral mastectomy, without the medical data that says this swingback trend is necessary. She concludes that overestimation of risk and potential regret are the motivating reasons that women have for choosing non-diseased breast removed and suggests that doctors reevaluate their treatment.
Unfortunately, the backlash to Peggy's questions have been fast and fierce and women believe they must defend their decision to do a double-mastectomy. But I believe the article is misunderstood. Peggy is not questioning a woman and her individual choice. She is questioning the medical community that has allowed this choice to become commonplace despite what medical data show.
Women reading this should not believe that questioning a medical approach is the same as questioning a human heart.
I can't say that enough. There is a difference between medical norms and data and the emotional life of women facing a crisis, and somewhere in between those two things is where the problem must be solved.
Choosing a bilateral mastectomy when cancer is only in one breast is completely understandable to me, and I think to Peggy. We've both been there, although she remains early stage and I am metastatic. We both chose to save one of our breasts but that doesn't mean we don't understand the emotions of cancer, or think negatively of those who made a different decision.
My choice not to remove my healthy breast was no less emotional than anybody else's. I didn't want to lose my breasts, pure and simple. I wanted sensation - I wanted to feel my future grandchild's head against my chest. I had test after test hoping to save my cancerous side, yearning for a lumpectomy. When it was impossible, then I didn't want to lose two. It was as simple as that. My decision was based on emotions, same as anybody else's. Not statistics, not logic or reason. So I get it.
Peggy mentions a cockroach in her article that brought back a memory: when I was a child, my mother was doing laundry in the garage. She got an insect on her, which freaked her out. She began screaming "Get it off, get it off!" so loudly the neighbors came running. To my great embarrassment, she whirled around and ripped her shirt off, and ended up standing in the garage with only her white bra and skirt on. Well, that is exactly what you feel when you hear "you have cancer." Something terrorizing is on you, and all you want is to rip it out and neighbors be damned.
Enter the doctor.
What has always puzzled me is why doctors so readily agree to cut off a healthy body part. Not only agree, but sometimes encourage it. I was adamant that I wanted breast conserving surgery to whatever extent possible. Sadly, it turned that I had multicentric disease and needed a right-sided mastectomy. I was able to keep my left. My right has been gone 5 years now, bless her heart. I miss her.
However, when I saw my plastic surgeon, he seemed shocked that I was going to keep my healthy breast, and suggested I consider removing it for the ability to get a more even, "beautiful, " reconstruction. The shock he expressed went both ways - I couldn't believe he thought that I should amputate a perfectly healthy body part to comply with his idea of beauty.
It is also another double-standard. When a man gets testicular cancer on one side, he does not cut all his junk off "just in case." Cancer doesn't jump from ball to ball, nor does it jump from boob to boob. No man I've heard of ever makes the choice to remove them both. Yet, our poor girls, when one gets sick they often both have to go.
Why is this? How did this come about, and why have doctors so readily agreed to do what is essentially unnecessary surgery to remove a healthy body part? Would they do it if a man requested it? Is it because they, like my plastic surgeon, believe that it leads to beauty? Is this a form of paternalism? Do they think we will argue and so they just automatically give in without making their case? (That is, after all, the excuse they use for over-prescribing antibiotics, which is now fueling uncontrollable diseases, one of which nearly killed me.) Or do they not understand the risks themselves?
Of all people, doctors should know that breasts are not unnecessary warts on our bodies. They are part of our physique, posture, and bodily structure and while they are designed for feeding babies, once that job is done it does not mean they can be lopped off like too-long fingernails.
Physicians often don't tell you about the problems that are possible after mastectomy. I have suffered greatly from the mastectomy and issues with recon. I never had the infections that many get, but I have had difficulty with movement that continues to this day, nearly five years after the surgery. My chest and shoulder has been painful since the reconstruction; I've had frozen shoulder in it 3 times now. Cortisone shots have kept me functioning but I have permanently lost range of motion in my right arm, which means my baseball career is definitely over. The implant feels unnatural and painful. I have never been able to go back to sleeping on my stomach, which used to be my favorite position. My chest muscles are weak, as are my back muscles, and worst of all - for five freaking years I have had a maddening itch somewhere in there that I cannot scratch because it's completely numb. Phantom itching, it's called. I am so grateful I only removed my diseased breast - I can't imagine years of not being able to lift both arms, having itching on both sides, along with everything else that has happened to me.
Of course, I am me. I don't represent everybody and many do not have these issues. The point is, nobody ever told me that the above listed problems could occur, and in my years of blog writing and discussing this with other cancer patients, these problems are neither uncommon, nor are they brought up in doctor's offices when mastectomies are discussed. Many women don't even understand their chests will be forever numb. And, while my insurance has covered millions of dollars worth of treatments for me over the course of my metastatic disease (and I am very, very grateful) - it doesn't cover physical therapy which I do need. I'm on my own with that.
Cancer that is in the breast can't kill you, we know this. Doctors take it out of the breast or take off the breast for the purpose of preventing cancer from spreading to an area where it can kill you, such as lung, liver, brain or bone. Removing a breast that doesn't have cancer doesn't prevent spread.
If there is no cancer in the breast, why are doctors removing it? Don't they have to live by the "do no harm" ethos? I can attest that the possibility of harm exists.
There are, of course, cases in which it makes good medical and physical sense to remove the contralateral breast. Lobular cancer tends to relapse to the other side, and the BRCA gene means both must go.
I also do not discount symmetry as a reason for wanting a bilateral mastectomy. Women are hopefully going to be living a long time with this new chest, and so if evenness is more important than sensation, than that is a valid choice. Many women have problem breasts - too big, pendulous, uncomfortable and do not mind their removal. Psychological and comfort reasons can important too. There are women with anxiety disorders who will not do well having mammograms frequently post-breast cancer. In cases like that, removing the breast to spare them that anxiety is reasonable.
It's just that the above reasons don't explain the sheer numbers of women who are doing "prophy" bilaterals now for very early stage cancer. Talking to woman after woman, as I do, it's like they have never even considered the idea of leaving their healthy breast alone. It's an automatic - disease in one breast means remove them both. Their doctors don't seem to have even brought it up.
Sure, there is always that frightening story about the rare woman who had no evidence of cancer in one of her breasts, chose to do a bilateral and behold, in the path report cancer was found in the non-cancer breast. That is used as a warning to not take chances. That is certainly a nerve-wracking story but not necessarily one that a patient should base her own decision for breast amputation upon. It's a story a doctor should be able to put into perspective, and if necessary, use tests to calm those fears.
Yes, cancer is sneaky, as evidenced by my own early stage, node-negative cancer ending up in my liver. But in medicine, you can't go by scary stories, you have to go by data.
I can't help but feel that the pink gang has helped fuel the misunderstanding of the risks involved in having cancer return to the opposite side. Most women questioned in the study over-estimated their risks by quite a bit. We are not aware, we are hyper-aware, to the point of being seriously misinformed. The cynic in me says that you can't have a pink army collecting money for you if there is no driving fear that causes one to hold out the collection plate.
The truth is, there are many cases in which a double is not necessary. Medicine should not put that on patients alone to decide. We aren't qualified. We are afraid. We probably have never read a medical text in our lives, we don't understand the statistics or the Cochrane-Armitage Scale or what Cox Proportional Hazards are. We are going to die and leave our babies! We have way too much to learn and not enough time to learn it. It is only natural to say, "take them off" and believe it's the safest thing. We can hope that we will get "perky new boobs" like everybody tells us. Nobody can blame a woman for that, or any of the other reasons she may choose to do a bilateral
Every women who did a bilateral did it for reasons that made sense to her, and what's done is done. There is no point in going back and revisiting it. We all just do the best we can for the reasons we understood at the time.
But this doesn't explain why doctors are doing so many. They know the risks with mastectomy and recon, they know the problems, they understand the data - or they should.
We should not question a woman's private decision but it is appropriate to question the medical establishment and find out why they have allowed this surgery to become the norm when it is medically unnecessary. And that is all Peggy was doing.
Going forward in the future, for those newly diagnosed, I think it is incumbent on doctors - it is their sacred responsibility - to make sure a woman understands their individual risks of contralateral breast cancer and overall survival, balance their desire for symmetry in reconstruction with the medical risks, and yes, include their mental state including fear and worry. Then help her make an informed decision, as unemotionally as possible, knowing a womans first thought is often "get it off!" This may take some time, and a doctor may have to sit with her, hold her hand, pull out the paperwork and explain the odds. Maybe even return a phone call or two. And, remind a woman that a prophy can always be done at a later date - if anxiety gets to her, if her need for symmetry is not met after reconstruction or for any other reason - that is established law. But once it is done, there is no going back.
I'm not sure what the correct answer to balance these needs are, but removing a healthy body part doesn't seem like the best way to start. To me, it seems like a last resort.