13 facts about MBC

Posted: October 19, 2011 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , | 4 Comments

 Metastatic Breast Cancer Awareness day has come and gone , but it coincides with the anniversary of my mom’s death (from cancer, natch), so I didn’t get to really blab about it on the actual day. I want to do that now.

I’ve gotten to know some bloggers who have MBC, and I’ve learned a lot about it. I have an entirely new understanding of it, although I can’t really know what it’s like.

I think about MBC a lot because my brain likes to go to those dark, scary places sometimes when it’s not otherwise occupied with thoughts of what I can cobble together for dinner, whether there’s enough dog food to put off the Costco run, and transporting children to games, practices, and lessons.

When I was newly diagnosed and consulting with oncologists, one of the oncs I didn’t pick said something that has stayed with me. (I didn’t not pick him because he said this, by the way.) He said once a cancer comes back, it’s no longer curable. No matter what stage you start and how fortuitous your prognosis, once it comes back, you move from curable to treatable.

Whoa.

That is frightening.

It’s also true.

I think about recurrence all the time. As in, at least once every day. Not in a wringing my hands kind of way, but in a “this is my reality” kind of way. I’ve done my homework and I’m very realistic. I would be surprised to skate outta this life without cancer yet again crashing my party.

Even though I feel like I did everything right, there is no guarantee that I won’t face recurrence. Bilateral mastectomy at age 41 seems drastic, but I like slash & burn warfare. Even though I have no breast tissue, I am not guaranteed that breast cancer won’t come back. My rate of recurrence is low, statistically, but as I’ve learned the hard way, stats don’t guarantee anything either.

I’m not saying this to be negative. No sir. In fact, there’s a tremendous amount of pressure on cancer patients, especially those with breast cancer, to be positive, to be optimistic, to be chipper about the fight. The irascible Molly Ivins spoke on this topic better than anyone:

“I suspect that cancer doesn’t give a rat’s ass whether you have a positive mental attitude. It just sits in there multiplying away, whether you are admirably stoic or weeping and wailing. The only reason to have a positive mental attitude is that it makes life better. It doesn’t cure cancer.”

Amen to that.

Molly also said this about BC: “Having breast cancer is massive amounts of no fun. First they mutilate you; then they poison you; then they burn you. I have been on blind dates better than that.”

But my favorite thing she said about BC is this:

“Losing a part of a breast or all of one or both has, obviously, serious psychological consequences. Your self-image, your sense of yourself as a woman, your sense of your sexual attractiveness are going to be rocked whether or not you have enough sense to realize that tits aren’t that important. I am one of those people who are out of touch with their emotions. I tend to treat my emotions like unpleasant relatives–a long-distance call once or twice or year is more than enough. If I got in touch with them, they might come to stay. My friend Mercedes Pena made me get in touch with my emotions just before I had a breast cut off. Just as I suspected, they were awful. ‘How do you Latinas do this–all the time in touch with your emotions?”‘I asked her. ‘That’s why we take siestas,’ she replied.”

Molly Ivins died of metastatic breast cancer on January 31, 2007 at age 62. I miss her sass, her liberal bias, and her writing about politicians who are “too big for their britches.” Anyone who uses that expression regularly will always have a seat at my table. The following 13 facts are  in her honor. It’s not much, Molly, but I hope it’s something.

googleimages.com

13 Facts Everyone Should Know about Metastatic Breast Cancer

1. No one dies from breast cancer that remains in the breast. The lump itself is not what kills. The metastasis of cancerous cells to a vital organ is what kills.

2. Metastasis refers to the spread of cancer to different parts of the body, typically the bones, liver, lungs and brain.

3. An estimated 155,000 Americans are currently living with metastatic breast cancer. Metastatic breast cancer accounts for approximately 40,000 deaths annually in the U.S.

4. Treatment for metastatic breast cancer is lifelong and focuses on control and quality of life vs. curative intent. (“Treatable but unbeatable.”)

5. About 6% to 10% of people are Stage IV from their initial diagnosis.

6. Early detection is not a cure. Metastatic breast cancer can occur ANY time after a person’s original diagnosis, EVEN if the patient was initially Stage 0, I, II or III and DESPITE getting annual checkups and annual mammograms.

7. Between 20% to 30% of people initially diagnosed with regional stage disease WILL develop metastatic breast cancer.

8. Young people DO get metastatic breast cancer.

9. There are many different kinds of metastatic breast cancer.

10. Treatment choices for MBC are guided by hormone (ER/PR) and HER2 receptor status, location and extent of metastasis (visceral vs. nonvisceral), previous treatment and other factors.

11. Metastatic breast cancer isn’t an automatic death sentence. Although most people will ultimately die of their disease, some can live long and productive lives.

12. There are no hard and fast prognostic statistics for metastatic breast cancer. Everyone’s situation is unique, but according to the American Cancer Society, the 5 year survival rate for stage IV is around 20%.

13. October 13 is National Metastatic Breast Cancer Awareness Day. To learn more about it as well as resources specifically for people with metastatic breast cancer see www. mbcn.org. We appreciate your support on October 13 and throughout the year.

6 years later…

Posted: October 13, 2011 | Author: | Filed under: breast cancer, kids | Tags: , , , , , , , , , , , , , , , , | 14 Comments

Today is National Metastatic Breast Cancer Awareness Day. Congress said so, and in making such a proclamation, let’s hope we get some action. Action beyond pink ribbons and promotional tie-ins like toilet paper and cups of yogurt. The estimate is that some 160,000 women are dealing with metastatic breast cancer, but I suspect the number is much higher. Metastatic means the cancer has spread. Stage IV. There is no Stage V. Every BC patient’s worst nightmare. Because being diagnosed at all, regardless of stage, isn’t nightmare enough.

I’ll save the mets post for another day, because there’s another commemoration taking place today, and I won’t be able to rest until I get this post out of my head.

Or so I thought.

I sat down at my computer to mark this important day, but I got nothing. I am stuck. The enormity of the topic overwhelms me. I want to write just the right thing, but in my quest for perfection I’m struck down, unable to convey the importance that screams to get out.

It’s not often that I’m at a loss for words, particularly on this little blog. I rarely have trouble thinking of what to write, and most days the topic guides me. Sometimes a topic pops into my head and I have an overwhelming urge to write. My fingers on the keyboard can hardly keep up with my thoughts as they tumble out of my head.

But today, I’ve got nothing.

And rather than make myself crazy on this day, this important yet heartbreaking day, I’m going to re-run the post from last year. I added a few more pictures, because this time last year I was brand-new to blogging and hadn’t quite figured out how to manage the images in my posts. But more importantly, I added a few more pictures because I need to remember what she looked like.

My heart is heavy as grief once again rears its ugly head and reminds me that she is gone, forever. 
It’s been exactly 5 years since my mom died. Lots of people have written about loss & grief, and most of them have done it more eloquently than I. If you knew her, you loved her. Plain & simple. She was one of those people. She never met a stranger and could talk to anyone. The stories are endless, and if I think really hard I can conjure up the sound of her laugh. I have to work hard to remember her voice, though, because her “sick” voice is the freshest one. I also have to think back to how she looked, pre-cancer, before the dreaded disease ravaged her body yet was unable to extinguish her effervescent personality.

My mom was an incredible cook. She grew up on a farm and lost her own mom at age 13, so she assumed more responsibility than a middle-schooler should. She taught me a lot in the kitchen, although I’ll never match her skill with pie crust. I try every year at Thanksgiving and Christmas, and end up exhausted, frustrated and having used a month’s worth of curse words. One year at Christmas she gave coupons for a homemade pie, and those were highly prized gifts for sure.

She was a “white” woman who married into a Greek family. “White” means anyone who’s not Greek. Sometimes the Greeks aren’t happy about “whites” joining a family, because they want their kids to marry other Greeks. My mom didn’t let that stop her. She ingratiated herself into the lives of the Greek women and learned their culinary secrets. It wasn’t long before she was the best cook in the bunch. Not bad for a “white” girl.

My sweet mama was the quintessential suburban at-home mom: PTA president, Girl Scout leader, queen of homemade Halloween costumes. She put a homemade meal on the table every night for dinner, and I was halfway through elementary school before I realized that the homemade cinnamon roll that was my lunchbox treat was a rarity.

She had a love of learning that I see echoed in my own kids. I’m sure she flourished at college, probably thrilled to be responsible only for herself for the first time in years. She was president of her sorority and got this fancy necklace to wear during her reign. The look of pure happiness on her face makes me smile all these years later. In her typical over-achieving way, she graduated college in 3 years, then became an English teacher before she became a mom. My whole childhood, she had us look up words in the dictionary to learn how to spell. I won the spelling bee in 4th grade, and to this day am proud of being a good speller. She instilled a love of words and reading that I’ll carry with me my entire life.

When Trevor graduated from business school in 2004, she was as proud of him as if he were her own child. In fact, once he married into her family, she considered him a son. Not a son-in-law, but a son. She was sick at the time this photo was taken, but hid it well. She didn’t want anything to interfere with his big day.

She had a lot of success in life, but her greatest achievement was being YaYa. She loved her grandbabies to the max, and when she knew she was losing her battle against cancer, she spoke of her sadness in not being able to watch them grow up. She’s missed out on a lot. But loss is a 2-way street, and the 4 kids who were lucky enough to have her as their YaYa, albeit way too briefly, have missed out as well. As each year passes, and her grandbabies grow up, they change and take on new interests and habits. She would have loved every minute of it. Something tells me she would have been quite adept at navigating whatever stage those little darlins are in.

Here they are on the day of her funeral.

Andrew was 8, Payton and his cousin Megan were 6, Macy was 3 when YaYa died. She was 67. Way too young, all the way around.

Life isn’t the same without her. While the pain of loss has lessened over the years, it’s still there, and I suspect it never goes away. No one in your life loves you the way a mother does. And no matter how old I become, I will always miss my mother’s love. Oliver Wendell Holmes said that “mothers carry the key of our souls in their bosoms.” That certainly was the case with my mom.

Milestones are hard when you’ve lost someone so dear. Every year, the week or so leading up to the anniversary of her death has been miserable. I find myself transported back to the time of  illness and all of the unpleasantness that entailed. Taking care of her was both the hardest thing ever and the greatest honor. I went into it knowing it would be hard, but having no idea how brutal. Balancing that with taking care of my young family was grueling, no doubt. But I wanted to come out of it with no regrets, and I’m happy to say that I did.

This year, however, was different. I wasn’t dreading the date. Maybe because I’ve got a lot on my mind and a lot on my plate. Maybe because as I get ever closer to regaining my “normal” life after my own cancer battle, I have a new perspective. Maybe I’m just getting absent-minded in my old age.

For a while after she died, I looked for her in crowds: at the grocery store, at a baseball game, at any random gathering. I knew, of course, that she wasn’t there. At least my rational brain knew that, but I looked anyway. I don’t know when it was that I stopped looking, but at some point, I started to see her. Not really her, but glimpses of people or expressions on faces that recalled her: the woman at the gym who looks a lot like her from the back. The resemblance in my niece to my mom’s photos as a child. My aunt’s hands, which look just like my mom’s.

This year, today, on the anniversary of her death, I wasn’t looking for her, but she was there. Today in my much-anticipated first tennis match since my mastectomy, my opponents’ names were Barbara and Ann. Guess what my mom’s name was? Yep, you got it — Barbara Ann.

6 years later…

Posted: October 14, 2010 | Author: | Filed under: breast cancer, kids | Tags: , , , , , , , , , , , , , , , , | 12 Comments

Today is National Metastatic Breast Cancer Awareness Day. Congress said so, and in making such a proclamation, let’s hope we get some action. Action beyond pink ribbons and promotional tie-ins like toilet paper and cups of yogurt. The estimate is that some 160,000 women are dealing with metastatic breast cancer, but I suspect the number is much higher. Metastatic means the cancer has spread. Stage IV. There is no Stage V. Every BC patient’s worst nightmare. Because being diagnosed at all, regardless of stage, isn’t nightmare enough.

I’ll save the mets post for another day, because there’s another commemoration taking place today, and I won’t be able to rest until I get this post out of my head.

Or so I thought.

I sat down at my computer to mark this important day, but I got nothing. I am stuck. The enormity of the topic overwhelms me. I want to write just the right thing, but in my quest for perfection I’m struck down, unable to convey the importance that screams to get out.

It’s not often that I’m at a loss for words, particularly on this little blog. I rarely have trouble thinking of what to write, and most days the topic guides me. Sometimes a topic pops into my head and I have an overwhelming urge to write. My fingers on the keyboard can hardly keep up with my thoughts as they tumble out of my head.

But today, I’ve got nothing.

And rather than make myself crazy on this day, this important yet heartbreaking day, I’m going to re-run the post from last year. I added a few more pictures, because this time last year I was brand-new to blogging and hadn’t quite figured out how to manage the images in my posts. But more importantly, I added a few more pictures because I need to remember what she looked like.

My heart is heavy as grief once again rears its ugly head and reminds me that she is gone, forever. 
It’s been exactly 5 years since my mom died. Lots of people have written about loss & grief, and most of them have done it more eloquently than I. If you knew her, you loved her. Plain & simple. She was one of those people. She never met a stranger and could talk to anyone. The stories are endless, and if I think really hard I can conjure up the sound of her laugh. I have to work hard to remember her voice, though, because her “sick” voice is the freshest one. I also have to think back to how she looked, pre-cancer, before the dreaded disease ravaged her body yet was unable to extinguish her effervescent personality.

My mom was an incredible cook. She grew up on a farm and lost her own mom at age 13, so she assumed more responsibility than a middle-schooler should. She taught me a lot in the kitchen, although I’ll never match her skill with pie crust. I try every year at Thanksgiving and Christmas, and end up exhausted, frustrated and having used a month’s worth of curse words. One year at Christmas she gave coupons for a homemade pie, and those were highly prized gifts for sure.

She was a “white” woman who married into a Greek family. “White” means anyone who’s not Greek. Sometimes the Greeks aren’t happy about “whites” joining a family, because they want their kids to marry other Greeks. My mom didn’t let that stop her. She ingratiated herself into the lives of the Greek women and learned their culinary secrets. It wasn’t long before she was the best cook in the bunch. Not bad for a “white” girl.

My sweet mama was the quintessential suburban at-home mom: PTA president, Girl Scout leader, queen of homemade Halloween costumes. She put a homemade meal on the table every night for dinner, and I was halfway through elementary school before I realized that the homemade cinnamon roll that was my lunchbox treat was a rarity.

She had a love of learning that I see echoed in my own kids. I’m sure she flourished at college, probably thrilled to be responsible only for herself for the first time in years. She was president of her sorority and got this fancy necklace to wear during her reign. The look of pure happiness on her face makes me smile all these years later. In her typical over-achieving way, she graduated college in 3 years, then became an English teacher before she became a mom. My whole childhood, she had us look up words in the dictionary to learn how to spell. I won the spelling bee in 4th grade, and to this day am proud of being a good speller. She instilled a love of words and reading that I’ll carry with me my entire life.

When Trevor graduated from business school in 2004, she was as proud of him as if he were her own child. In fact, once he married into her family, she considered him a son. Not a son-in-law, but a son. She was sick at the time this photo was taken, but hid it well. She didn’t want anything to interfere with his big day.

She had a lot of success in life, but her greatest achievement was being YaYa. She loved her grandbabies to the max, and when she knew she was losing her battle against cancer, she spoke of her sadness in not being able to watch them grow up. She’s missed out on a lot. But loss is a 2-way street, and the 4 kids who were lucky enough to have her as their YaYa, albeit way too briefly, have missed out as well. As each year passes, and her grandbabies grow up, they change and take on new interests and habits. She would have loved every minute of it. Something tells me she would have been quite adept at navigating whatever stage those little darlins are in.

Here they are on the day of her funeral.

Andrew was 8, Payton and his cousin Megan were 6, Macy was 3 when YaYa died. She was 67. Way too young, all the way around.

Life isn’t the same without her. While the pain of loss has lessened over the years, it’s still there, and I suspect it never goes away. No one in your life loves you the way a mother does. And no matter how old I become, I will always miss my mother’s love. Oliver Wendell Holmes said that “mothers carry the key of our souls in their bosoms.” That certainly was the case with my mom.

Milestones are hard when you’ve lost someone so dear. Every year, the week or so leading up to the anniversary of her death has been miserable. I find myself transported back to the time of  illness and all of the unpleasantness that entailed. Taking care of her was both the hardest thing ever and the greatest honor. I went into it knowing it would be hard, but having no idea how brutal. Balancing that with taking care of my young family was grueling, no doubt. But I wanted to come out of it with no regrets, and I’m happy to say that I did.

This year, however, was different. I wasn’t dreading the date. Maybe because I’ve got a lot on my mind and a lot on my plate. Maybe because as I get ever closer to regaining my “normal” life after my own cancer battle, I have a new perspective. Maybe I’m just getting absent-minded in my old age.

For a while after she died, I looked for her in crowds: at the grocery store, at a baseball game, at any random gathering. I knew, of course, that she wasn’t there. At least my rational brain knew that, but I looked anyway. I don’t know when it was that I stopped looking, but at some point, I started to see her. Not really her, but glimpses of people or expressions on faces that recalled her: the woman at the gym who looks a lot like her from the back. The resemblance in my niece to my mom’s photos as a child. My aunt’s hands, which look just like my mom’s.

This year, today, on the anniversary of her death, I wasn’t looking for her, but she was there. Today in my much-anticipated first tennis match since my mastectomy, my opponents’ names were Barbara and Ann. Guess what my mom’s name was? Yep, you got it — Barbara Ann.