I'm going to walk. I've been doing it most of my life so how hard can it really be? I walk on my breaks at work (when I remember to take them). I walk with the kids if they beg me long enough. I walk across parking lots on my way to one store or another. Easy peasy.
On July 10th and 11th I'll be walking with a purpose. I'll be in San Francisco walking the walk... the Avon Walk for Breast Cancer! It's a mere 39 miles across the City By The Bay. Thirty. Nine. You heard me! Ack!!!!!
I am excited to get started! I'm going to train! I'm going to work hard. I'm going to raise tons of money for a great cause!!! I'm going to do my part to ensure that no one else has to lose their parts ever again!!!!
I hope I can make it. I hope I can raise enough money. $1800 is a lot of money! I'm thinking of forming a team. Maybe Team Mothers with Cancer or Team Class of 84! Maybe something else entirely.
Will you walk with me? Will you help fight the good fight? Will you walk for Andrea Collins-Smith, Cancer Visa, and One Mother With Cancer who lost their battles against the beast? Will you donate for the many, many moms over at Mothers With Cancer that have been victimized by breast cancer?
Will you walk for me?
Showing posts with label Inflammatory Breast Cancer (IBC). Show all posts
Showing posts with label Inflammatory Breast Cancer (IBC). Show all posts
Tuesday, January 12, 2010
Thursday, December 31, 2009
A decade ago... a decade to go.
I sit here today realizing that this day is the last of a decade that has changed my life profoundly. So profoundly, in fact, that the me of the last decade almost seems to be someone else entirely.
I eagerly awaited this decade past as The Begining of my "life". Ten years ago I was one year into my marriage and newly pregnant. I looked forward to a New Years Eve which would fulfill expectations set in 1982 by (the artist who would become formerly known as) Prince when he told us to "party like it's 1999!" Has any New Years Eve ever been anticipated longer??? I was fresh into a new field of Government work, living in our newly purchased home. The changes forthcoming in the 2000s were unknown and exciting!
Now, a decade later, I am an "old married woman". I am the mother of two children who both define and and give meaning to my life. They also limit the life Icould would have. Our previously new house is now a home cluttered with the comforts and debris of a life too busy. I have an expertise in my job that only comes from longevity and have trained every co-worker in my office.
My life has traveled a path in the last ten years I never could have anticipated. Motherhood has proved more challenging and satisfying than I would have believed possible. I have one child with ADHD and another who is blind and most likely autistic. I marvel at the naive view I'd had of parenthood. My life alternates between the whirlwind of activity that is work, school, sports, life and the frustrating slowness that surrounds a child with handicaps. I have long since lost the surety of knowing my path and content myself with the newness of the changing scenery instead.
I leave the "naughties" as a Breast Cancer Survivor. This decade that ushered me into motherhood also brought me face to face with death. I discovered reserves of strength within myself I never would have thought possible. I also found a deep and abiding faith and peacefulness that fortifies me today.
Ten years ago I looked to this past decade as a fulfilment of the promise of my life. Today I see it as but an introduction. The stage has been set, the players cast. I can't wait to turn the page and read my script!
Bring on the next decade! Surprise me! Amaze me! Shock me! I can't be disappointed for time has given me life and life has given me more time. I am anxious to see the me of 2019. It is my only wish for the next decade.
I eagerly awaited this decade past as The Begining of my "life". Ten years ago I was one year into my marriage and newly pregnant. I looked forward to a New Years Eve which would fulfill expectations set in 1982 by (the artist who would become formerly known as) Prince when he told us to "party like it's 1999!" Has any New Years Eve ever been anticipated longer??? I was fresh into a new field of Government work, living in our newly purchased home. The changes forthcoming in the 2000s were unknown and exciting!
Now, a decade later, I am an "old married woman". I am the mother of two children who both define and and give meaning to my life. They also limit the life I
My life has traveled a path in the last ten years I never could have anticipated. Motherhood has proved more challenging and satisfying than I would have believed possible. I have one child with ADHD and another who is blind and most likely autistic. I marvel at the naive view I'd had of parenthood. My life alternates between the whirlwind of activity that is work, school, sports, life and the frustrating slowness that surrounds a child with handicaps. I have long since lost the surety of knowing my path and content myself with the newness of the changing scenery instead.
I leave the "naughties" as a Breast Cancer Survivor. This decade that ushered me into motherhood also brought me face to face with death. I discovered reserves of strength within myself I never would have thought possible. I also found a deep and abiding faith and peacefulness that fortifies me today.
Ten years ago I looked to this past decade as a fulfilment of the promise of my life. Today I see it as but an introduction. The stage has been set, the players cast. I can't wait to turn the page and read my script!
Bring on the next decade! Surprise me! Amaze me! Shock me! I can't be disappointed for time has given me life and life has given me more time. I am anxious to see the me of 2019. It is my only wish for the next decade.
Friday, November 13, 2009
I love being right!!!
Pardon me while I gloat... I do so love to be right.
I've been telling all my Inflammatory Breast Cancer (IBC) friends and myself that the current survival statistics don't apply to us (those diagnosed since 2001). Why? Well because back in the day the doctors used to treat IBC just like every other breast cancer out there instead of the nasty variety it really is. Typical treatment used to be diagnosis, mastectomy, chemotherapy and radiation. All of this followed relatively quickly by recurrence. Lovely.
According to the National Cancer Institute, women diagnosed with IBC between 1998-2001had a 5-year relative survival rate of 40% (it used to be 25%!) compared to roughly 87% for other breast cancers. But that was before neoadjuvant chemotherapy. Neoadjuvant is chemo given before surgery. This type of treatment makes all the difference in the world to an IBC patient!
Inflammatory breast cancer's symptoms, which are listed below, cause the breast to grow really large, really quickly. In my own experience my affected breast grew to near double the size of the other (which was no small size to begin with) within about 2 months time. Also, it's quite the non-specific cancer cell - more of a general inflammation not an actual tumor. All this makes it very difficult, if not impossible, to get clean borders during a mastectomy. So the nasty little cells would come back to visit quickly and were not please about being uncerimoniously evicted in the first place.
Here are general symptoms of IBC:
Good thing for us IBC patients that neoadjuvant treatment is the new and improved way of doing business because it has increased our 5 year survival rate. This is where me being right comes in. According to the Mayo Clinic neoadjuvant therapy combined with surgery, radiation and more chemotherapy has increased IBC survival to 50% at the five year mark. Best of all, nearly 1/3 are alive 20 years after diagnosis!!!
Plus, general breast cancer mortality has dropped 2% a year since 1990.
We are making strides, folks!!! Large strides!
I intend to be here twenty years from now, beating the internet-at-large about the head and neck until each and every one out there knows about Inflammatory Breast Cancer and why it's so insidious. Or... until it's completely wiped out, which ever comes first!
Cross-posted to Mothers with Cancer
I've been telling all my Inflammatory Breast Cancer (IBC) friends and myself that the current survival statistics don't apply to us (those diagnosed since 2001). Why? Well because back in the day the doctors used to treat IBC just like every other breast cancer out there instead of the nasty variety it really is. Typical treatment used to be diagnosis, mastectomy, chemotherapy and radiation. All of this followed relatively quickly by recurrence. Lovely.
According to the National Cancer Institute, women diagnosed with IBC between 1998-2001had a 5-year relative survival rate of 40% (it used to be 25%!) compared to roughly 87% for other breast cancers. But that was before neoadjuvant chemotherapy. Neoadjuvant is chemo given before surgery. This type of treatment makes all the difference in the world to an IBC patient!
Inflammatory breast cancer's symptoms, which are listed below, cause the breast to grow really large, really quickly. In my own experience my affected breast grew to near double the size of the other (which was no small size to begin with) within about 2 months time. Also, it's quite the non-specific cancer cell - more of a general inflammation not an actual tumor. All this makes it very difficult, if not impossible, to get clean borders during a mastectomy. So the nasty little cells would come back to visit quickly and were not please about being uncerimoniously evicted in the first place.
Here are general symptoms of IBC:
- A breast that appears discolored (red, purple, pink or bruised);
- A tender, firm and enlarged breast (sometimes overnight);
- A warm feeling in the breast (or may feel hot/warm to the touch);
- Persistent itching of the breast (not relieved with cream or salve);
- Shooting or stabbing pain;
- Ridged or dimpled skin texture, similar to an orange peel;
- Thickened areas of breast tissue;
- Enlarged lymph nodes under the arm, above/below the collarbone;
- Flattening or retraction of the nipple;
- Swollen or crusted skin on the nipple;
- Change in color of the skin around the nipple (areola)
Good thing for us IBC patients that neoadjuvant treatment is the new and improved way of doing business because it has increased our 5 year survival rate. This is where me being right comes in. According to the Mayo Clinic neoadjuvant therapy combined with surgery, radiation and more chemotherapy has increased IBC survival to 50% at the five year mark. Best of all, nearly 1/3 are alive 20 years after diagnosis!!!
Plus, general breast cancer mortality has dropped 2% a year since 1990.
We are making strides, folks!!! Large strides!
I intend to be here twenty years from now, beating the internet-at-large about the head and neck until each and every one out there knows about Inflammatory Breast Cancer and why it's so insidious. Or... until it's completely wiped out, which ever comes first!
Cross-posted to Mothers with Cancer
Wednesday, November 4, 2009
My cross to bear...
Dr. Wendy Harpham of On Healthy Survivorship poses a great question to cancer survivors last week. She wants to know which stage of cancer was the most challenging? Diagnosis? Beginning treatment? Ending treatment? Some time in the middle?
For Dr. Harpham it was those limbo days between initial diagnosis and treatment beginning. I know what she means. For me, it seemed an exceptionally long time. I was diagnosed on December 22, 2005 - the Thursday just before Christmas. Most every healthcare professional was heading out of town. Certainly no one wanted to take on a new patient over the holidays. Consequently, I didn't meet with my new Oncologist until January 3, 2006 and began chemo the next day.
Those 13 days were beyond horrible. There was a cancer inside me thriving at my expense. It seemed to grow bigger every day! I could feel it. I swear, I could hear it whisper dark promises of an early death and motherless children.
What bittersweet Holidays that year. Daddy-O and I had agreed not to tell anyone about my diagnosis until after New Year's. Why ruin everyone's Christmas? The end result, however, was a great burden on our hearts that we couldn't share with our friends and family. Each seasonal tradition was painful beyond belief. Who would search with loving dedication for just the right gift from Santa? Who would listen to their babbling, aimless words and sift from them their heart's desire? Would I ever read The Night Before Christmas to my little boys again? Would I ever see their eyes alight with the wonder that is Christmas morning ever again?
The day I began chemotherapy was the. best. day. of the next 10 months. No more being hostage to fate! No more victim! At last I was fighting back!
Still, I don't think that was the most trying time for me... My toughest day was the day I truly started losing my hair and made the decision to shave the rest off. Until that day I had not really felt ill despite my first round of chemo. Until that day cancer had seemed vague and ephemeral; death had been theoretical.
Roughly two weeks after my first chemotherapy treatment my hair began coming loose from my scalp. Initially, it was funny. It's really the strangest thing. It doesn't fall out all over the place. I didn't wake up with a scalp on my pillow. All the hairs still look firmly attached but they're not. It's like they're all held on with Post-It glue. One little tug and it comes away in your fingers without so much as a "pip" to indicate the separation. It's kind of amusing in a hey-look-at-my-cool-new-party-trick sort of way. A couple of mornings later and it's not so funny anymore. I won't bore you with the details again.
Losing my hair took me out of the closet. I became a walking Poster Girl for chemotherapy. Every time I looked in the mirror I was confronted with my mortality. The baldness literally stripped me bare. I couldn't walk through the store without drawing stares. My son would beg me to take off my hat to show his friends my bald head.
With my hair went my vanity, my anonimity and my delusion that I would live forever. Looking back I feel very, very blessed.
Cross-posted to Mothers with Cancer.
For Dr. Harpham it was those limbo days between initial diagnosis and treatment beginning. I know what she means. For me, it seemed an exceptionally long time. I was diagnosed on December 22, 2005 - the Thursday just before Christmas. Most every healthcare professional was heading out of town. Certainly no one wanted to take on a new patient over the holidays. Consequently, I didn't meet with my new Oncologist until January 3, 2006 and began chemo the next day.
Those 13 days were beyond horrible. There was a cancer inside me thriving at my expense. It seemed to grow bigger every day! I could feel it. I swear, I could hear it whisper dark promises of an early death and motherless children.
What bittersweet Holidays that year. Daddy-O and I had agreed not to tell anyone about my diagnosis until after New Year's. Why ruin everyone's Christmas? The end result, however, was a great burden on our hearts that we couldn't share with our friends and family. Each seasonal tradition was painful beyond belief. Who would search with loving dedication for just the right gift from Santa? Who would listen to their babbling, aimless words and sift from them their heart's desire? Would I ever read The Night Before Christmas to my little boys again? Would I ever see their eyes alight with the wonder that is Christmas morning ever again?
The day I began chemotherapy was the. best. day. of the next 10 months. No more being hostage to fate! No more victim! At last I was fighting back!
Still, I don't think that was the most trying time for me... My toughest day was the day I truly started losing my hair and made the decision to shave the rest off. Until that day I had not really felt ill despite my first round of chemo. Until that day cancer had seemed vague and ephemeral; death had been theoretical.
Roughly two weeks after my first chemotherapy treatment my hair began coming loose from my scalp. Initially, it was funny. It's really the strangest thing. It doesn't fall out all over the place. I didn't wake up with a scalp on my pillow. All the hairs still look firmly attached but they're not. It's like they're all held on with Post-It glue. One little tug and it comes away in your fingers without so much as a "pip" to indicate the separation. It's kind of amusing in a hey-look-at-my-cool-new-party-trick sort of way. A couple of mornings later and it's not so funny anymore. I won't bore you with the details again.
Losing my hair took me out of the closet. I became a walking Poster Girl for chemotherapy. Every time I looked in the mirror I was confronted with my mortality. The baldness literally stripped me bare. I couldn't walk through the store without drawing stares. My son would beg me to take off my hat to show his friends my bald head.
With my hair went my vanity, my anonimity and my delusion that I would live forever. Looking back I feel very, very blessed.
Cross-posted to Mothers with Cancer.
Wednesday, October 21, 2009
Semantics
It has been a momentus week so far. Yesterday I finally reached the end of my third year of Cancer Freedom! That's just an awkward way of saying it's been three years since I finished treatment for Inflammatory Breast Cancer. Today I had my Well-Check with my Oncologist and was given a Clean Bill of Health. Bloodwork results are normal. My overall health is normal. I am hideously normal - probably the only one in my family that is - and couldn't be happier about it!!!
These checkup visits are becoming rather mundane these days. Dr. Villa walks into the exam room. We hug. She gives me my lab results before we even sit down just to get it out of the way. Then she asks after the kids and Daddy-O before we get on to how I've been feeling. Ultimately, we always manage to fit in some sort of small philosophical discussion in. Today's topic was Remission.
This word has been bothering me for quite a while now. Every time I read WhyMommy's posts on Mothers With Cancer or Toddler Planet I cringe at the mention of her being in "remission". I've asked WhyMommy before why it is she refers to herself that way. Wouldn't you know it... It's because that's what her doctor told her.
Here is my problem with remission - it sounds like a temporary state of affairs. Remission makes me feel like the other shoe could drop at any moment. It feels like a close cousin to that other re word - recurrence.
So I brought up WhyMommy and her annoying status of "in remission". Turns out I am "in remission", too!
And here I thought I was "cancer-free." Surprise! Surprise! And not the good kind either.
After a moment or two of discussion I realized that it all comes down to semantics.
Dr. Villa glanced at me out of the corner of her eye, head cocked to the side. "You don't think you're cured, do you?"
Uh... not anymore... Actually, I've never thought I was. I've always referred to myself as Cancer-Free and didn't delve any deeper than that. Turns out that no doctor (the "worth their salt" was implied) would ever mention cured until the 5 year mark. Yeah. I knew that.
So, just to be clear, here is the definition of Remission as taken straight from Dictionary.com.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
''Hay Olivia,don't tell anybody this it's a seacret'',Ok here i go ''i LOVE YOU Olivia''.
These checkup visits are becoming rather mundane these days. Dr. Villa walks into the exam room. We hug. She gives me my lab results before we even sit down just to get it out of the way. Then she asks after the kids and Daddy-O before we get on to how I've been feeling. Ultimately, we always manage to fit in some sort of small philosophical discussion in. Today's topic was Remission.
This word has been bothering me for quite a while now. Every time I read WhyMommy's posts on Mothers With Cancer or Toddler Planet I cringe at the mention of her being in "remission". I've asked WhyMommy before why it is she refers to herself that way. Wouldn't you know it... It's because that's what her doctor told her.
Here is my problem with remission - it sounds like a temporary state of affairs. Remission makes me feel like the other shoe could drop at any moment. It feels like a close cousin to that other re word - recurrence.
So I brought up WhyMommy and her annoying status of "in remission". Turns out I am "in remission", too!
And here I thought I was "cancer-free." Surprise! Surprise! And not the good kind either.
After a moment or two of discussion I realized that it all comes down to semantics.
Dr. Villa glanced at me out of the corner of her eye, head cocked to the side. "You don't think you're cured, do you?"
Uh... not anymore... Actually, I've never thought I was. I've always referred to myself as Cancer-Free and didn't delve any deeper than that. Turns out that no doctor (the "worth their salt" was implied) would ever mention cured until the 5 year mark. Yeah. I knew that.
So, just to be clear, here is the definition of Remission as taken straight from Dictionary.com.
Medicine/Medical.I still think it sounds pretty ominous to me! But I guess I'll forgive all doctors in general - just this once.
a.
a temporary or permanent decrease or subsidence of manifestations of a disease.
b.
a period during which such a decrease or subsidence occurs: The patient's leukemia was in remission.
Note: The term remission is often used in speaking of sufferers from leukemia or other cancers whose symptoms lessen or disappear. In such a case, the disease is said to be “in remission.” The period of remission may last only briefly or may extend over several months or years.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
In other completely unrelated news, Ben sent his first love letter over the weekend. Via email. (It's the wave of the future, folks. I hear it's really catching on!)
He is only nine. years. old! We're talking about a single digit age! Sheesh! I thought I had at least another year or two.
At the risk of completely alienating him in the future, I am sharing his email with you because I am so touched by the damned sweetness of the whole thing. And also the horror!
''Hay Olivia,don't tell anybody this it's a seacret'',Ok here i go ''i LOVE YOU Olivia''.Plus, did you notice there were not boxes to check? No question of reciprocation? Just a lot of putting himself out there like that. Wow! Times sure have changed since I was a kid!
Thursday, October 1, 2009
Putting on the Pink
Ironically, Danny first refused to nurse on my right breast in October 2005-- my first sign of cancer. It's appropriate that I ended my breast cancer treatments nearly three years ago during Breast Cancer Awareness Month.
It took me only five weeks to realize that something was wrong with my body. The last normal weeks of my life. It took another four weeks for a breast exam, mammogram, ultrasound, surgical appointments, fine needle aspiration and finally, a core needle biopsy, before my diagnosis on December 22. Merry Christmas. Nine weeks. And life is never the same again. Nine. Short. Weeks. And every month since has been Breast Cancer Awareness Month.
So I'm putting on the pink for the month of October. I hope it helps even one woman do a self-exam!
In the meantime, however, I have a website to share with you. It's called The Urban Dictionary. It is a dictionary of slang. Like Wikipedia, Urban Dictionary is publicly defined site. As a parent I find this site extremely useful. As an ex-kid I find it irresistibly entertaining! In that light I offer you a few of my recently found favorite slang words. See if you can figure out which one I submitted...
Cybercondriac: An individual that reads symptoms of illnesses on the net and begins to believe they're sick.
Half your age plus seven: A dividing-line / rule, whereby one may not make a Romantic/erotic/sexual move toward someone who is not at least half one's age, plus seven more years. Ha! My co-worker is forever quoting this rule. He swears that since he is 30 it is ok for him to date women that are 22. Makes perfect sense until you reverse it. By this calculation at 43 I should be able to date a man twice my age less 7 years. That's 72 years old!!!!! Gah!
Restless Lip Syndrom: When a person keeps interrupting a conversation and can't keep their mouth shut. Hee... I know a few who suffer from this.
Sticker Paralysis: The effect caused by having a really awesome sticker and no appropriate place to use it. General symptoms include keeping the sticker in a drawer and never actually using it. Sometimes resulting in affixation remorse.
Nipple Envy: What a woman feels when she sees another woman's nipple erection and hasn't completed her post-mastectomy reconstruction. I so suffer from this!!!!!
Pisshap: A mishap involving urine, usually after a mass amount of alcohol has been consumed. This one has worked its way into my every day conversation!!!!! And that's kind of sad...
It took me only five weeks to realize that something was wrong with my body. The last normal weeks of my life. It took another four weeks for a breast exam, mammogram, ultrasound, surgical appointments, fine needle aspiration and finally, a core needle biopsy, before my diagnosis on December 22. Merry Christmas. Nine weeks. And life is never the same again. Nine. Short. Weeks. And every month since has been Breast Cancer Awareness Month.
So I'm putting on the pink for the month of October. I hope it helps even one woman do a self-exam!
In the meantime, however, I have a website to share with you. It's called The Urban Dictionary. It is a dictionary of slang. Like Wikipedia, Urban Dictionary is publicly defined site. As a parent I find this site extremely useful. As an ex-kid I find it irresistibly entertaining! In that light I offer you a few of my recently found favorite slang words. See if you can figure out which one I submitted...
Cybercondriac: An individual that reads symptoms of illnesses on the net and begins to believe they're sick.
Half your age plus seven: A dividing-line / rule, whereby one may not make a Romantic/erotic/sexual move toward someone who is not at least half one's age, plus seven more years. Ha! My co-worker is forever quoting this rule. He swears that since he is 30 it is ok for him to date women that are 22. Makes perfect sense until you reverse it. By this calculation at 43 I should be able to date a man twice my age less 7 years. That's 72 years old!!!!! Gah!
Restless Lip Syndrom: When a person keeps interrupting a conversation and can't keep their mouth shut. Hee... I know a few who suffer from this.
Sticker Paralysis: The effect caused by having a really awesome sticker and no appropriate place to use it. General symptoms include keeping the sticker in a drawer and never actually using it. Sometimes resulting in affixation remorse.
Nipple Envy: What a woman feels when she sees another woman's nipple erection and hasn't completed her post-mastectomy reconstruction. I so suffer from this!!!!!
Pisshap: A mishap involving urine, usually after a mass amount of alcohol has been consumed. This one has worked its way into my every day conversation!!!!! And that's kind of sad...
Friday, August 14, 2009
My journey through baldness
I was looking through some old pictures the other night and ran across some from my Year of Cancer. I thought it might be interesting to post the photographic tale of that time...
January 21, 2006
My newly shaved head.
Over my shoulder you can see the wig I bought ahead of time and never wore.
February 5, 2006
The first picture of my bald head.
February 12, 2006
I was still working in this picture and
was picking the boys up from WonderSitter's house.
February 20, 2006
This was taken when I went home for my step-dad's funeral.
I had recently gone on disability and you can see
the affect the steroids are having on my weight...
In a few short months my Mom would also be diagnosed with Breast Cancer.
May 6, 2006
Me and my big steroid Moon-Face went to Vegas
to meet my bff from Maryland.
End of May 2006
My first dinner sitting up at the dinner table after
my single mastectomy.
I had been off chemo for about 6 weeks.
My head was developing a nice 5 o'clock shadow.
August 1, 2006
We took Ben to Disneyland for his 6th birthday.
I was half way through radiation and had been taking Xeloda for 2 months.
The wonderful tan is courtesy of one of Xeloda's side effects: sun sensitivity.
I used a wheelchair in the park as much as possible.
By the end of this weekend my feet had peeled in huge chunks many layers deep
and my underarm was sloughing off it's radiation-damaged skin leaving a
disgusting, green, oozy patch of tissue in it's place.
Daddy-O thinks this was my lowest point physically.
September 13, 2006
I was firmly in what I jokingly called "The Dyke Days".
Everywhere I went the looks of sympathy for a cancer patient
became questionable looks that may or may not have disapproved
of my presumed lifestyle choice. Ha!
My Mom was just entering her Chemo Poster Child phase.
October 3, 2006
Mike and I in Mexico. I felt like I had soooo much hair!
Only 17 more days until I am done with all my chemo!!!
November 23, 2006
Thanksgiving Day
One Month Survivor with many, many reasons to give thanks!
January 21, 2006My newly shaved head.
Over my shoulder you can see the wig I bought ahead of time and never wore.
February 5, 2006The first picture of my bald head.
February 12, 2006I was still working in this picture and
was picking the boys up from WonderSitter's house.
February 20, 2006This was taken when I went home for my step-dad's funeral.
I had recently gone on disability and you can see
the affect the steroids are having on my weight...
In a few short months my Mom would also be diagnosed with Breast Cancer.
May 6, 2006Me and my big steroid Moon-Face went to Vegas
to meet my bff from Maryland.
End of May 2006My first dinner sitting up at the dinner table after
my single mastectomy.
I had been off chemo for about 6 weeks.
My head was developing a nice 5 o'clock shadow.
August 1, 2006We took Ben to Disneyland for his 6th birthday.
I was half way through radiation and had been taking Xeloda for 2 months.
The wonderful tan is courtesy of one of Xeloda's side effects: sun sensitivity.
I used a wheelchair in the park as much as possible.
By the end of this weekend my feet had peeled in huge chunks many layers deep
and my underarm was sloughing off it's radiation-damaged skin leaving a
disgusting, green, oozy patch of tissue in it's place.
Daddy-O thinks this was my lowest point physically.
September 13, 2006I was firmly in what I jokingly called "The Dyke Days".
Everywhere I went the looks of sympathy for a cancer patient
became questionable looks that may or may not have disapproved
of my presumed lifestyle choice. Ha!
My Mom was just entering her Chemo Poster Child phase.
October 3, 2006Mike and I in Mexico. I felt like I had soooo much hair!
Only 17 more days until I am done with all my chemo!!!
November 23, 2006Thanksgiving Day
One Month Survivor with many, many reasons to give thanks!
It's hard to believe that was nearly 3 years ago...
Monday, August 10, 2009
Well, that was disconcerting...
I just finished watching an episode of Mystery Diagnosis. Not my usual TV fare but this one was about Inflammatory Breast Cancer, or as they called it: "The Breasts That Changed Color."
The show told the story of Amanda Nixon who at 27 years young found her breast hardening and changing colors shortly after breast reduction surgery. This is a new twist on the typical IBC tale. The vast majority of IBC patients are either pregnant or nursing when misdiagnosed with mastitis.
Four years later Amanda is cancer-free and very active in the fight against IBC. She has beaten the odds... so far.
I've never really heard hard statistics on the IBC mortality rate. I just knew it was very high. Well, tonight I heard the official stats. A mere 40% of IBC victims are alive 5 years after diagnosis. Only 30% by 10 years. !!!!!!!!!!!!!!!!!!!
Here are some more numbers for you. One in eight women will be diagnosed with breast cancer in their lifetime. Of those women, one in ten will be under age 40. Cancer in younger women is typically more aggressive than other cancers.
Although those numbers are frightening, as an IBC survivor I have them embedded in my psyche. What I found disconcerting is that there is not standardized triage for breast cancer patients.
My oncologist was all over the IBC diagnosis. Even when I was in denial. I foolishly decided I didn't have IBC because there was no clinical proof. Like I can just decide that something is or isn't so and have the world fall into line. It's laughable, really. Or maybe just naive.
Amanda Nixon's doctor had no idea that the eggplant colored breast he was looking at was IBC. Don't they have a checklist or something???? I mean, really. Anyone with internet access can Google "breast discoloration" and find literally hundreds of thousands of sights referencing Inflammatory Breast Cancer!
My own mother was sent to a surgeon for a lumpectomy but NEVER REFERRED TO AN ONCOLOGIST. At least not until I badgered her and she badgered the surgeon and she finally fired him for dragging his feet on the referral. Gee, it turns out she is BRCA 2 positive just. like. me. Seeing an oncologist changed her entire course of treatment.
WHY isn't every woman diagnosed with Breast Cancer referred to an oncologist - even if it's just for an evaluation?
WHY isn't there an intake "symptom checklist" for Breast Cancer patients that can be fed into a database or something?
WHY, in the age of the internet, is there such a wide range of knowledge, awareness and approach to Inflammatory Breast Cancer? For cripes sake, some doctors are still doing surgery first before chemo!!!!
And why are some of us blessed enough to be here three, four, even ten years later when others don't last out the year?
Cross posted to Mothers With Cancer
The show told the story of Amanda Nixon who at 27 years young found her breast hardening and changing colors shortly after breast reduction surgery. This is a new twist on the typical IBC tale. The vast majority of IBC patients are either pregnant or nursing when misdiagnosed with mastitis.
Four years later Amanda is cancer-free and very active in the fight against IBC. She has beaten the odds... so far.
I've never really heard hard statistics on the IBC mortality rate. I just knew it was very high. Well, tonight I heard the official stats. A mere 40% of IBC victims are alive 5 years after diagnosis. Only 30% by 10 years. !!!!!!!!!!!!!!!!!!!
Here are some more numbers for you. One in eight women will be diagnosed with breast cancer in their lifetime. Of those women, one in ten will be under age 40. Cancer in younger women is typically more aggressive than other cancers.
Although those numbers are frightening, as an IBC survivor I have them embedded in my psyche. What I found disconcerting is that there is not standardized triage for breast cancer patients.
My oncologist was all over the IBC diagnosis. Even when I was in denial. I foolishly decided I didn't have IBC because there was no clinical proof. Like I can just decide that something is or isn't so and have the world fall into line. It's laughable, really. Or maybe just naive.
Amanda Nixon's doctor had no idea that the eggplant colored breast he was looking at was IBC. Don't they have a checklist or something???? I mean, really. Anyone with internet access can Google "breast discoloration" and find literally hundreds of thousands of sights referencing Inflammatory Breast Cancer!
My own mother was sent to a surgeon for a lumpectomy but NEVER REFERRED TO AN ONCOLOGIST. At least not until I badgered her and she badgered the surgeon and she finally fired him for dragging his feet on the referral. Gee, it turns out she is BRCA 2 positive just. like. me. Seeing an oncologist changed her entire course of treatment.
WHY isn't every woman diagnosed with Breast Cancer referred to an oncologist - even if it's just for an evaluation?
WHY isn't there an intake "symptom checklist" for Breast Cancer patients that can be fed into a database or something?
WHY, in the age of the internet, is there such a wide range of knowledge, awareness and approach to Inflammatory Breast Cancer? For cripes sake, some doctors are still doing surgery first before chemo!!!!
And why are some of us blessed enough to be here three, four, even ten years later when others don't last out the year?
Cross posted to Mothers With Cancer
Tuesday, July 14, 2009
999
That's how many days I've been cancer free. Nine hundred ninety nine days. I've had 23,976 minutes - healthy minutes - with my family and friends that I wasn't sure I'd ever have.
Tomorrow I mark 1,000 days of bonus life. Can I say how much I love that without jinxing it?
I saw Dr. Villa, my oncologist, today for my 999 day checkup. It was my eleventh 3-month appointment over the last two years, 8 months and 25 days. Actually, I forgot I even had an appointment today until I looked at the calendar this morning. I've been very busy. But I choose to look at my forgetfulness as a very, very good sign.
It means I've been feeling so healthy that there has been no reason for the insidious paranoia that haunts and torments all cancer survivors. It means cancer is not the focus of my life anymore. Is there any better news than that? I wasn't sure I'd ever see this day.
Is this what it means to be a survivor? Not a date on a calendar. Not five years. Not a countdown from date of diagnosis or surgery or end of treatment? Perhaps, it's just a feeling, instead. Survivorship. Surviving in body, mind and spirit. A true return to normal.
I hope so, anyway.
Cross-posted to Mothers with Cancer
Tomorrow I mark 1,000 days of bonus life. Can I say how much I love that without jinxing it?
I saw Dr. Villa, my oncologist, today for my 999 day checkup. It was my eleventh 3-month appointment over the last two years, 8 months and 25 days. Actually, I forgot I even had an appointment today until I looked at the calendar this morning. I've been very busy. But I choose to look at my forgetfulness as a very, very good sign.
It means I've been feeling so healthy that there has been no reason for the insidious paranoia that haunts and torments all cancer survivors. It means cancer is not the focus of my life anymore. Is there any better news than that? I wasn't sure I'd ever see this day.
Is this what it means to be a survivor? Not a date on a calendar. Not five years. Not a countdown from date of diagnosis or surgery or end of treatment? Perhaps, it's just a feeling, instead. Survivorship. Surviving in body, mind and spirit. A true return to normal.
I hope so, anyway.
Cross-posted to Mothers with Cancer
Tuesday, March 31, 2009
Ob la di, ob la da
I have not blogging much at all of late. There's a lot of good in that and a fair amount of bad as well. I've been busy as a one-armed paper hanger. Work is backed up. I'm rarely away from my desk. I'm not taking my breaks or walking like I should so my weight is creeping upwards ever so slowly. Of course, all that busy at work makes my days fly by, too. When I get home there is a whole other life that gets crammed into the few hours between 4:00 pm and 8:00 when the kids go to bed. There's Little League practice twice a week and now games twice a week as well. Therapy for Danny once a week. The ever present laundry and my FaceBook addiction. And filling every spare minute in between is my photography passion.
That's the good stuff. I've been too busy living life to spend much time blogging about it. On the negative side, I'm coming up on my 25,000 mile (2.5 year) check up. As always, I start worrying out of the blue. This time my location of concern is my right hip. It has been hurting for a couple of months now. But the last few weeks it's become so sore that it wakes me at night and I can barely walk up stairs. So this check up, I get a bonus bone scan!
Tomorrow is my chest/abdomen/pelvic CT. Thursday is my bone scan. Then I have to wait until the 14th (!) before I see my oncologist for the results. I'll never make it. I haven't even had the scans yet and I want to call for the results already. Yet, I hope I don't here from her office before my appointment, know what I mean????
Of course, when everything turns out to be just fine I will have made it two and a half years beyond treatment for Inflammatory Breast Cancer. THAT will be a post in and of itself.
In sadder news, Mothers With Cancer lost another of it's own this week. Alabama Pink (Manda) of Whoa, Camel! fame has lost her battle with leukemia. She leaves behind a beautiful 3 year old son, Alastair and the love of her life, Adrian. You can read about her passing on Adrian's blog Rainbows! Puppies! Leukemia. Say a little prayer today for Manda's family.
That's the good stuff. I've been too busy living life to spend much time blogging about it. On the negative side, I'm coming up on my 25,000 mile (2.5 year) check up. As always, I start worrying out of the blue. This time my location of concern is my right hip. It has been hurting for a couple of months now. But the last few weeks it's become so sore that it wakes me at night and I can barely walk up stairs. So this check up, I get a bonus bone scan!
Tomorrow is my chest/abdomen/pelvic CT. Thursday is my bone scan. Then I have to wait until the 14th (!) before I see my oncologist for the results. I'll never make it. I haven't even had the scans yet and I want to call for the results already. Yet, I hope I don't here from her office before my appointment, know what I mean????
Of course, when everything turns out to be just fine I will have made it two and a half years beyond treatment for Inflammatory Breast Cancer. THAT will be a post in and of itself.
In sadder news, Mothers With Cancer lost another of it's own this week. Alabama Pink (Manda) of Whoa, Camel! fame has lost her battle with leukemia. She leaves behind a beautiful 3 year old son, Alastair and the love of her life, Adrian. You can read about her passing on Adrian's blog Rainbows! Puppies! Leukemia. Say a little prayer today for Manda's family.
Tuesday, December 23, 2008
The Journey's the thing
Three years ago yesterday my whole world stopped. For a split second anyway. Before it was thrust into a strange slow-motion, fast-forward kaleidoscope of cancer treatment and regrets for a future with my children that might never be.
Is there and other phrase that has the same effect as "it's cancer"? What powerful, life-changing words those are. Normally I would think news of a close friend or relative's diagnosis would be worse than your own. But after careful consideration, I think it's far, far worse if it is oneself. Particularly, if you happen to be the mother of young children.
When I heard the words for the first time my heart stopped. Confirmation. My worst fear. I cried.
Was I crying for myself? The prospect of death. The stress of all the medical tests. The relief of finally knowing. The fear of an unknown future.
Was I crying for my kids? Losing their mother at such young ages (that was the only end I could see for them). The confusion and pain they would feel because of me. The scars they would always carry. How those scars would change their lives.
Was I crying for my mother? Hearing that one of your children may die (not a certainty in her context for some reason). Bearing powerless witness as the child you created fights for survival. The pain that would cause - the unnecessary burden.
All those thoughts rushed through my head at once, scorching a path as they passed. Quickly in and out. Shock left in their wake. Mental paralysis. Yet my fingers started typing. As the doctor's voice relayed test numbers and statistics through the phone to some walled-off portion of my brain, I tapped off an email to co-workers. "It's cancer." Even in shock I knew it would be less painful to type than to speak those dreaded words.
I don't know how long that call lasted, but there was a tight wall of support behind me as I put the phone in its cradle. I couldn't turn around. I felt marked. Marked for death. An object of pity. Not strong. Weak - in constitution and capability. A failure. I ran away from their concern like a coward .
~~~~~
All through my treatment, I never successfully shook those initial feelings of failure and weakness. I'd failed to remain healthy. I'd failed as a wife; cashing in the vows from our marriage. In sickness and health. Till death do us part. I'd failed as a mother. Would I see my boys grown? Would I leave Danny with a father stretched too thin from providing and filling both parental roles to adequately see to his therapies and education?
Yet I survived.
Chemotherapy made me realize what strength is... and that I have it. It gave me time to work through that onus of weakness and failure. Time to realize that God's plan was perfect - even for my children. Even if it means that they may have to live without me someday. It gave me time to appreciate my husband for the man that he is and not the one I sometimes wish he was. And to be grateful for those in my life that have always been there for me, and even more that stepped out of shadows and into my life. Mostly, it gave me time to acknowledge my life, my loves and my future... in all its incarnations.
I am so pleased to be here three years and one day later. I am proud of the journey I've made. I am grateful that I have been able to walk my boys through a difficult time and prepare them for others in the future. More grateful still that those future tragedies just might not include their mother.
When I look back at that afternoon in December 2005 I see myself consumed with fear. Today I have replaced that fear with power and action. Daddy-O still refuses to mention the "C" word by name, choosing instead to simply reference his worry from time to time, knowing I'll know exactly what he means. As for me, I talk about it often - stripping cancer's power and making it my own.
I am more than a Breast Cancer Survivor - I am a Thriver.
Is there and other phrase that has the same effect as "it's cancer"? What powerful, life-changing words those are. Normally I would think news of a close friend or relative's diagnosis would be worse than your own. But after careful consideration, I think it's far, far worse if it is oneself. Particularly, if you happen to be the mother of young children.
When I heard the words for the first time my heart stopped. Confirmation. My worst fear. I cried.
Was I crying for myself? The prospect of death. The stress of all the medical tests. The relief of finally knowing. The fear of an unknown future.
Was I crying for my kids? Losing their mother at such young ages (that was the only end I could see for them). The confusion and pain they would feel because of me. The scars they would always carry. How those scars would change their lives.
Was I crying for my mother? Hearing that one of your children may die (not a certainty in her context for some reason). Bearing powerless witness as the child you created fights for survival. The pain that would cause - the unnecessary burden.
All those thoughts rushed through my head at once, scorching a path as they passed. Quickly in and out. Shock left in their wake. Mental paralysis. Yet my fingers started typing. As the doctor's voice relayed test numbers and statistics through the phone to some walled-off portion of my brain, I tapped off an email to co-workers. "It's cancer." Even in shock I knew it would be less painful to type than to speak those dreaded words.
I don't know how long that call lasted, but there was a tight wall of support behind me as I put the phone in its cradle. I couldn't turn around. I felt marked. Marked for death. An object of pity. Not strong. Weak - in constitution and capability. A failure. I ran away from their concern like a coward .
~~~~~
All through my treatment, I never successfully shook those initial feelings of failure and weakness. I'd failed to remain healthy. I'd failed as a wife; cashing in the vows from our marriage. In sickness and health. Till death do us part. I'd failed as a mother. Would I see my boys grown? Would I leave Danny with a father stretched too thin from providing and filling both parental roles to adequately see to his therapies and education?
Yet I survived.
Chemotherapy made me realize what strength is... and that I have it. It gave me time to work through that onus of weakness and failure. Time to realize that God's plan was perfect - even for my children. Even if it means that they may have to live without me someday. It gave me time to appreciate my husband for the man that he is and not the one I sometimes wish he was. And to be grateful for those in my life that have always been there for me, and even more that stepped out of shadows and into my life. Mostly, it gave me time to acknowledge my life, my loves and my future... in all its incarnations.
I am so pleased to be here three years and one day later. I am proud of the journey I've made. I am grateful that I have been able to walk my boys through a difficult time and prepare them for others in the future. More grateful still that those future tragedies just might not include their mother.
When I look back at that afternoon in December 2005 I see myself consumed with fear. Today I have replaced that fear with power and action. Daddy-O still refuses to mention the "C" word by name, choosing instead to simply reference his worry from time to time, knowing I'll know exactly what he means. As for me, I talk about it often - stripping cancer's power and making it my own.
I am more than a Breast Cancer Survivor - I am a Thriver.
Friday, October 31, 2008
Monday, October 27, 2008
New and Improved! Now even better than before!
That’s me. New and Improved.
The obvious, of course, is that experts have worked hard to remove all cancer from my body. As a result, I am now Cancer Free. And we all know that the less ingredients something contains the more it is worth. Today, however, I received an unexpected upgrade.
This afternoon I had my optometrist appointment. The first one in a little over two years. I hadn’t really remembered much from my last appointment. My main goal is always to get my contact prescription refilled and get on with my life. But that particular year, 2006, I was in the midst of breast cancer treatment. I had just finished 8 rounds of dose dense chemotherapy, had just had my first single mastectomy and was regaining my strength in anticipation of 6 months of oral chemo in concert with 6 weeks of radiation therapy. In short, I had other things on my mind than my eyes. So I was a bit nonplussed when Dr. E asked if my cataract had been bothering me.
I didn’t even remember I had a cataract. Once he said it, though, it all did sound vaguely familiar. Something about a very small developing cataract that we were going to keep an eye on…
At any rate, Dr. E settled in to begin my exam. “Let’s get a look at that fading near vision.” He says as he hands me a card with impossibly small letters on it. As he logged my results in my chart it was his turn to look a bit confused. It seems my near vision is better now than it was two years ago. I reminded him that I had been in the midst of chemo last time and under a significant amount of stress to boot. Perhaps that had effected my eyesight. He was skeptical. “Maybe… but that has never been my experience.”
Whatever, I know what stress can do. A bit of blurred vision is the least of the possibilities.
Then he moved on to “get a look at that cataract”. Only he couldn’t find it. You read it correctly. He looked and he looked. He used about three different lights and all but crawled inside my eyeball his own self. Seems I no longer have a small developing cataract.
Dr. E is such a jovial man. It was wonderful to see him all but scratch his head and smile while he said that it just must have been the chemotherapy because there certainly wasn’t any cataract now. He declared me “Too perfect. More perfect than last time.” and sent me on my way.
A little over two years ago I had Inflammatory Breast Cancer, a small cataract, fading near vision, and cough-variant asthma. Today I am cancer free, cataract free, have perfect near vision and no asthma issues to speak of. I’m a advertiser’s dream!
More importantly, I am blessed beyond measure.
Cross posted to Mothers With Cancer
Tuesday, October 14, 2008
Why I am celebrating this October
Am I celebrating because today is my first boyfriend's birthday? (Happy Birthday, Troy!)
Nope. I got over that looooong ago. Strange though, that I still remember his birthday every single year. It's been 38 years for cripe's sake. (What kind of word is "cripe", anyway? I think I need a better vocabulary.) But, I digress.
Am I celebrating because it's the Federal Government's Fiscal New Year and I hardly have any work to do? You betcha! Yet, still not the reason I'm posting.
Is it because my Candidate O'Choice, Barak Obama, has widened his lead over McCain and his less-than-qualified VP pick to a whopping 14%?
Oh, no. There will be no celebrating yet. I hear there is a little thing called the Bradley Effect (when voters are too ashamed to tell opinion pollsters how they really feel) and I'm not going to tempt the fates. But if it wasn't for that little anomaly possibility... I'd be doing the happy dance all over the place.
No. I am celebrating because I have just received a clean bill of health from my oncologist!
Two Years. No cancer. No Evidence of Disease. Blood work all normal.
Triple Negative Inflammatory Breast Cancer. On Breastcancer.org, Dr. Gabriel Hortobagyi, F.A.C.P says that with current neo-adjuvant treatments for IBC, "about one in three patients with inflammatory breast cancer will survive five years, and the great majority of those who do are probably cured of their inflammatory breast cancer. (here's the good part) Most of the recurrences of inflammatory breast cancer have been very early, within the first couple of years."
Dr. Thomas Buchholz, also on Breastcancer.org, agrees. "It is true that if IBC were to recur, it tends to reoccur earlier compared to non-IBC breast cancer. For example, non-IBC breast cancer can even recur a decade after treatment. This would be very, very unusual for patients with IBC."
What do you think? Is that enough reason to celebrate this October?
October 2006 - Mexico
Today.
Two Years Cancer Free and counting...
Nope. I got over that looooong ago. Strange though, that I still remember his birthday every single year. It's been 38 years for cripe's sake. (What kind of word is "cripe", anyway? I think I need a better vocabulary.) But, I digress.
Am I celebrating because it's the Federal Government's Fiscal New Year and I hardly have any work to do? You betcha! Yet, still not the reason I'm posting.
Is it because my Candidate O'Choice, Barak Obama, has widened his lead over McCain and his less-than-qualified VP pick to a whopping 14%?
Oh, no. There will be no celebrating yet. I hear there is a little thing called the Bradley Effect (when voters are too ashamed to tell opinion pollsters how they really feel) and I'm not going to tempt the fates. But if it wasn't for that little anomaly possibility... I'd be doing the happy dance all over the place.
No. I am celebrating because I have just received a clean bill of health from my oncologist!
Two Years. No cancer. No Evidence of Disease. Blood work all normal.
Triple Negative Inflammatory Breast Cancer. On Breastcancer.org, Dr. Gabriel Hortobagyi, F.A.C.P says that with current neo-adjuvant treatments for IBC, "about one in three patients with inflammatory breast cancer will survive five years, and the great majority of those who do are probably cured of their inflammatory breast cancer. (here's the good part) Most of the recurrences of inflammatory breast cancer have been very early, within the first couple of years."
Dr. Thomas Buchholz, also on Breastcancer.org, agrees. "It is true that if IBC were to recur, it tends to reoccur earlier compared to non-IBC breast cancer. For example, non-IBC breast cancer can even recur a decade after treatment. This would be very, very unusual for patients with IBC."
What do you think? Is that enough reason to celebrate this October?
October 2006 - Mexico
Today. Two Years Cancer Free and counting...
Monday, September 29, 2008
"I Feel Good" (cue James Brown)
I wasn't a blogger when I had cancer. Mostly I think that's a bad thing. It would have been interesting to read back over my posts from those first days after diagnosis - to hear the shell-shock in my words. Or those days of chemo and radiation and pure exhaustion. But other days, I feel that it's all for the best to have those memories locked up inside me in a place that only I will ever see. Overall I am an extremely positive person, but there were some fairly desolate hours during treatment.
All of that only makes me more aware of how far I've come. How good things are these days.
I have always had a strong constitution yet the year or so before my cancer diagnosis (when I was pregnant with Danny) I was plagued by irritating physical issues. I wasn't sick, per se. I was, however, very "run down". I developed a cough that wouldn't go away and eventually made it so difficult to catch my breath that I found myself spending New Years Day 2005 in the Emergency Room. This was not my first trip there either. I'd been twice before for the same thing. I would just cough to the point of (wetting myself) and not being able to get any oxygen. The very act of talking was almost more than I could handle at times. Those of you who know me understand how torturous that was. The long and short of it was Cough Variant (Bronchial) Asthma irritated by my pregnancy. Those were bleak days. Hey... maybe that's why chemo wasn't so difficult for me. At least I could breath.
So... the point I'm trying to make is this...
Here it is, our End of Fiscal Year at work, and I've been working my tail off. I worked 58 hours last week and 56 the week before (including weekends). I go home and have visitation with my boys (that's what it feels like these days), order in some dinner and collapse on the couch until everyone under 4' tall is asleep and I can finally go to bed myself. Then it all starts over again the next day. And yet, I feel wonderful. Exhilarated. Tired, to be sure, but good.
I can breathe. That's always a great thing. I'm not so short tempered as to be a shrieking harridan with my husband and kids. Shamefully, this has not always been the case in the past. And I have enough energy to go to and enjoy Ben's soccer games, surf the internet and manage my fantasy football team.
It's funny how we tend to lose sight of our blessings - like good health and abundant energy - in the midst of our work-a-day world. Those all important things that we take for granted until they are pulled from us. Today I am counting my blessings.
Side note: I just got a sad call from Daddy-O. All male members of my household are home sick today. Laid low by head colds.
Cross posted to Mothers With Cancer
All of that only makes me more aware of how far I've come. How good things are these days.
I have always had a strong constitution yet the year or so before my cancer diagnosis (when I was pregnant with Danny) I was plagued by irritating physical issues. I wasn't sick, per se. I was, however, very "run down". I developed a cough that wouldn't go away and eventually made it so difficult to catch my breath that I found myself spending New Years Day 2005 in the Emergency Room. This was not my first trip there either. I'd been twice before for the same thing. I would just cough to the point of (wetting myself) and not being able to get any oxygen. The very act of talking was almost more than I could handle at times. Those of you who know me understand how torturous that was. The long and short of it was Cough Variant (Bronchial) Asthma irritated by my pregnancy. Those were bleak days. Hey...
So... the point I'm trying to make is this...
Here it is, our End of Fiscal Year at work, and I've been working my tail off. I worked 58 hours last week and 56 the week before (including weekends). I go home and have visitation with my boys (that's what it feels like these days), order in some dinner and collapse on the couch until everyone under 4' tall is asleep and I can finally go to bed myself. Then it all starts over again the next day. And yet, I feel wonderful. Exhilarated. Tired, to be sure, but good.
I can breathe. That's always a great thing. I'm not so short tempered as to be a shrieking harridan with my husband and kids. Shamefully, this has not always been the case in the past. And I have enough energy to go to and enjoy Ben's soccer games, surf the internet and manage my fantasy football team.
It's funny how we tend to lose sight of our blessings - like good health and abundant energy - in the midst of our work-a-day world. Those all important things that we take for granted until they are pulled from us. Today I am counting my blessings.
Side note: I just got a sad call from Daddy-O. All male members of my household are home sick today. Laid low by head colds.
Cross posted to Mothers With Cancer
Monday, September 22, 2008
Countdown
It's that time of year again. The end of fiscal year. The time of year that all Federal Government Contracting employees work until the money is alllllll gone. Day and night. Weekdays. Weekends. Did I mention we don't get overtime? One of the great ironies of Federal employment is that we do not fall under federal labor laws. Instead, we get "comp time", an hour off for an hour worked.
At any rate, In just 8 short days, I will get my life back. Just in time for October, aka National Breast Cancer Awareness Month. Working towards my new focus, bringing Breast Cancer out of the shadows and into the light, I will be hosting a fund raiser for Young Survival Coalition.
I thought about doing a walk, or (gulp) a run... But any one that knows me would recognize that as a pipe dream. So I decided to go with what I know. Beverages. Namely, the adult kind. And it just so happens that YSC is sponsoring a Drink Pink, Think Pink campaign. So, I am going to throw a Pink Cocktail Party!
I'm just so excited. The very thought of a pretty pink Pomegranate Martini just might get me through the next eight days...
At any rate, In just 8 short days, I will get my life back. Just in time for October, aka National Breast Cancer Awareness Month. Working towards my new focus, bringing Breast Cancer out of the shadows and into the light, I will be hosting a fund raiser for Young Survival Coalition.
I thought about doing a walk, or (gulp) a run... But any one that knows me would recognize that as a pipe dream. So I decided to go with what I know. Beverages. Namely, the adult kind. And it just so happens that YSC is sponsoring a Drink Pink, Think Pink campaign. So, I am going to throw a Pink Cocktail Party!
I'm just so excited. The very thought of a pretty pink Pomegranate Martini just might get me through the next eight days...
Monday, September 1, 2008
How to be happy in spite of it all, part 1
Just after I returned to work after breast cancer treatment, a co-worker paid me an incredible compliment. She told me that I had handled my diagnosis and treatment with (I am paraphrasing here with all the accuracy Chemo-Brain permits) incredible grace and, well, I can't remember what else, but it was good. The general idea was that I had a wonderfully positive attitude that continued to astound those around me.
I pshawed her, of course. Because, there was nothing graceful about my actions nor reactions. Nothing heroic. Nothing brave. At least I didn't think so. I was just doing what I had always done during trying times. What I had watched my mother do before me. And my grandmother before her. I put on a happy face.
Sounds simple doesn't it? Or maybe you're thinking simplistic is more like it. Well, you're probably right. When others began asking me exactly how I stayed so positive in the face of a daunting cancer diagnosis and 90% recurrence risk, right on the heals of my finding out my infant was born blind, well, I couldn't explain it. At least not in terms of usable information. It's just something I'd been raised doing. I didn't know quite how to explain the process.
Then I found The Bounce Back Book, by Karen Salmansohn a few weeks ago. It's a short little self-help book, more along the lines of a pocket manual than a book, but it certainly clarified things for me. Salmansohn has a knack for doing exactly what I could not; break down the process of having and maintaining a positive attitude.
In her book, Salmansohn offers 75 tips for "thriving in the face of adversity, setbacks, and losses." Many of these tips are a bit redundant, merely rewording the same advice to fit a slightly different situation. Sometimes that's what it takes, however, for understanding to register. Hearing something many, many different ways. I don't mean for this to be a book review, yet if I had a friend going through a rough patch and looking for a way to fight negativity, I'd consider sending The Bounce Back Book. We could all learn a bit from it's pages.
For my purposes here, I will tell you what I took away from this book. That is, I will share with you those behaviors (as identified by Salmansohn) that I have practiced over the years and feel contributed to my success in overcoming the more negative crap life has thrown my way.
The Formula
Each of us has a genetic tendency toward optimism or pessimism, according to The Happiness Project in the U.K. This, however, only accounts for about 50% of our personal happiness equation. The rest is all about what you do and the choices you make. Dr. Jonathan Haidt even came up with a fancy, schmancy formula to become happier. And he's a Positive Psychologist, or a positive psychologist (I'm not sure which-but I think it might make a difference) so he ought to know.
I pshawed her, of course. Because, there was nothing graceful about my actions nor reactions. Nothing heroic. Nothing brave. At least I didn't think so. I was just doing what I had always done during trying times. What I had watched my mother do before me. And my grandmother before her. I put on a happy face.
Sounds simple doesn't it? Or maybe you're thinking simplistic is more like it. Well, you're probably right. When others began asking me exactly how I stayed so positive in the face of a daunting cancer diagnosis and 90% recurrence risk, right on the heals of my finding out my infant was born blind, well, I couldn't explain it. At least not in terms of usable information. It's just something I'd been raised doing. I didn't know quite how to explain the process.
Then I found The Bounce Back Book, by Karen Salmansohn a few weeks ago. It's a short little self-help book, more along the lines of a pocket manual than a book, but it certainly clarified things for me. Salmansohn has a knack for doing exactly what I could not; break down the process of having and maintaining a positive attitude.
In her book, Salmansohn offers 75 tips for "thriving in the face of adversity, setbacks, and losses." Many of these tips are a bit redundant, merely rewording the same advice to fit a slightly different situation. Sometimes that's what it takes, however, for understanding to register. Hearing something many, many different ways. I don't mean for this to be a book review, yet if I had a friend going through a rough patch and looking for a way to fight negativity, I'd consider sending The Bounce Back Book. We could all learn a bit from it's pages.
For my purposes here, I will tell you what I took away from this book. That is, I will share with you those behaviors (as identified by Salmansohn) that I have practiced over the years and feel contributed to my success in overcoming the more negative crap life has thrown my way.
The Formula
Each of us has a genetic tendency toward optimism or pessimism, according to The Happiness Project in the U.K. This, however, only accounts for about 50% of our personal happiness equation. The rest is all about what you do and the choices you make. Dr. Jonathan Haidt even came up with a fancy, schmancy formula to become happier. And he's a Positive Psychologist, or a positive psychologist (I'm not sure which-but I think it might make a difference) so he ought to know.
H = S + C + V
H = happiness level C = current conditions
I happen to think Dr. Haidt is on to something.
Family
About that genetic predisposition towards happiness, or not. I guess I must have it. We're real Nietzsche people in my family, "What does not kill us, makes us stronger." And boy, oh, boy, have we been getting stronger in my lifetime. I've always remembered my Mom laughing off the bad times. She always found the humor in life when I was growing up and still does to this day.
Humor saved the day when I was fourteen years old, sitting in the front row in front of my Father's casket with the rest of my family at his funeral. As you can imagine, it had been a stressful few days after he'd died, no matter how expected his death was. We, as a family, have always turned to humor in times of stress. True to form, when we noticed that the florist's shop had placed an arrangement directly in front of my Mom's chair that was completely bug-eaten, we just couldn't stop the giggles. I'm sure the entire congregation behind us thought we were sobbing uncontrollably, in reality, we were shaking from trying not to laugh out loud.
We're sort of wacked, I know. But that outlook has served us well, over the years. In general, we try to always see the humor in a situation. One of my very first comments after my cancer diagnosis, which came close to Christmas 2005, was that I wouldn't have to worry about what I ate over the holidays because I was starting the Chemo Diet come January!! Woohoo! Holidays, here I come!
My family could have focused on the loss of my dad, instead we chose to break an overwhelming situation down into more manageable pieces. We focused on the insect-riddled flowers to get through the funeral.
H = happiness level C = current conditions
S = set point for happiness V = voluntary activities
I happen to think Dr. Haidt is on to something.
Family
About that genetic predisposition towards happiness, or not. I guess I must have it. We're real Nietzsche people in my family, "What does not kill us, makes us stronger." And boy, oh, boy, have we been getting stronger in my lifetime. I've always remembered my Mom laughing off the bad times. She always found the humor in life when I was growing up and still does to this day.
Humor saved the day when I was fourteen years old, sitting in the front row in front of my Father's casket with the rest of my family at his funeral. As you can imagine, it had been a stressful few days after he'd died, no matter how expected his death was. We, as a family, have always turned to humor in times of stress. True to form, when we noticed that the florist's shop had placed an arrangement directly in front of my Mom's chair that was completely bug-eaten, we just couldn't stop the giggles. I'm sure the entire congregation behind us thought we were sobbing uncontrollably, in reality, we were shaking from trying not to laugh out loud.
We're sort of wacked, I know. But that outlook has served us well, over the years. In general, we try to always see the humor in a situation. One of my very first comments after my cancer diagnosis, which came close to Christmas 2005, was that I wouldn't have to worry about what I ate over the holidays because I was starting the Chemo Diet come January!! Woohoo! Holidays, here I come!
My family could have focused on the loss of my dad, instead we chose to break an overwhelming situation down into more manageable pieces. We focused on the insect-riddled flowers to get through the funeral.
Similarly, I chose to see the diet-free holiday season as a silver lining instead of the dark cloud that was a cancer diagnosis. The cloud hadn't blown away and my dad was still gone but my outlook on the world was much more positive for my efforts.
Cross posted at Mothers with Cancer
Friday, August 29, 2008
Breast Cancer and the Stressed-out Dodo
Remember the Dodo birds from the Disney movie Ice Age? There's a part where they all walk around chanting, "Doomed. Doomed. DOOMED. DOOOOOMED!" Just before they all accidentally walk, jump, fall or roll off the cliff one by one.
Well, that's about how I feel every time I read a new article about breast cancer research. This morning's article on Yahoo Health informed me that I was doomed from childhood.
According to the latest research by Dr. Ronit Peled of Ben-Gurion University of the Negev in Beer Sheva, experiencing severe life events at a young age (before 20) can increase your risk of developing breast cancer by as much as 62%. Well, shit.
Doomed.
Peled studied 622 women between 25 and 45 years old. 41% of them had been diagnosed with breast cancer, the other 59% had not. Their "Severe Life Events", such as loss of a spouse or close relative were tallied as well as mild/moderately stressful events like bad illness, tragedy or job loss and they were given a questionnaire to determine their anxiety, depression, happiness and optimism levels.
Guess what? The women who had two or more severe or mild/moderate life events were 62% more likely to have beast cancer. Plus, those mild/moderate life events seem to build on each other for a cumulative effect. Oh, goody!
The good news? Women with a "general feeling of happiness and optimism" had a lower risk of being diagnosed. About 25% lower.
His conclusion: Women suffering severe losses at a young age should be considered at high risk for breast cancer and treated accordingly. Do you hear that AMA???
Also of note, Isreal has the highest incidence of breast cancer in the world. But it's not like there's any stress about living there or anything.
As I read the article I did a quick mental calculation of my pre-20 Severe Life Events.
Well, that's about how I feel every time I read a new article about breast cancer research. This morning's article on Yahoo Health informed me that I was doomed from childhood.
According to the latest research by Dr. Ronit Peled of Ben-Gurion University of the Negev in Beer Sheva, experiencing severe life events at a young age (before 20) can increase your risk of developing breast cancer by as much as 62%. Well, shit.
Doomed.
Peled studied 622 women between 25 and 45 years old. 41% of them had been diagnosed with breast cancer, the other 59% had not. Their "Severe Life Events", such as loss of a spouse or close relative were tallied as well as mild/moderately stressful events like bad illness, tragedy or job loss and they were given a questionnaire to determine their anxiety, depression, happiness and optimism levels.
Guess what? The women who had two or more severe or mild/moderate life events were 62% more likely to have beast cancer. Plus, those mild/moderate life events seem to build on each other for a cumulative effect. Oh, goody!
The good news? Women with a "general feeling of happiness and optimism" had a lower risk of being diagnosed. About 25% lower.
His conclusion: Women suffering severe losses at a young age should be considered at high risk for breast cancer and treated accordingly. Do you hear that AMA???
Also of note, Isreal has the highest incidence of breast cancer in the world. But it's not like there's any stress about living there or anything.
As I read the article I did a quick mental calculation of my pre-20 Severe Life Events.
- Age 11 - Dad clinically died for 5 1/2 minutes.
- Age 14 - Dad died.
- Age 15 - House burned down
- Age 15 - Close schoolmate committed suicide
- Age 17 - Schoolmate killed in freak car accident
Doomed.
Looking back, I had many risk factors for breast cancer that I was unaware were even risk factors. Of course, there is the ever-popular BRCA2 genetic mutation. But, hey, it's not like I knew about that before hand. I had read, however, about the increased risk for women who had their first child after the age of 30. I was 33. What was I supposed to do about that, though? Go pop out a pup just to avoid the Big C? Hardly.
And this article brought to my attention the role early stress may have played in my disease. Also, the Mayor of Lemonland at World Wide Breast Cancer informed me that a history of benign breast biopsies is also a high risk indicator for breast cancer.
Huh. See what I mean? Me and the Dodos had a lot in common.
Wednesday, August 13, 2008
Laugh Cancer Into Submission
Laugh, and the world laughs with you.
Cry, and you find yourself all alone in your room.
What? Is that only at my house?
Humor is the lubricant of life. It eases our way through tight situations, keeps the friction from getting so hot that it causes permanent damage and generally allows for smoother interaction between all the parts that make up our hectic lives.
Humor, it can be said, is a miracle fix-all.
Toward that end, Young Survival Coalition and Stand Up to Cancer (SU2C) are combining their significant resources and those of ABC, NBC and CBS to air a fund raiser on Friday, September 5, 2008. Money will go toward all the cutting edge research we read about in the news. Research the government doesn't want to fund. Research that will save lives.
We are so close to a cure for cancer. So close. Close enough to a cure that our children may not ever have to worry about dying from over-producing, vagrant cells that overtake healthy cells and kill them. Close enough that many cancers are already considered "chronic diseases" instead of terminal.
Close enough that even the little bit of money that I am able to spare can help the cause.
Won't you please help, too?
Mark your calendars. Program your TiVo or DVR. 8:00 p.m., Friday, September 5, 2008. Help laugh cancer into submission!!!
Cry, and you find yourself all alone in your room.
What? Is that only at my house?
Humor is the lubricant of life. It eases our way through tight situations, keeps the friction from getting so hot that it causes permanent damage and generally allows for smoother interaction between all the parts that make up our hectic lives.
Humor, it can be said, is a miracle fix-all.
Toward that end, Young Survival Coalition and Stand Up to Cancer (SU2C) are combining their significant resources and those of ABC, NBC and CBS to air a fund raiser on Friday, September 5, 2008. Money will go toward all the cutting edge research we read about in the news. Research the government doesn't want to fund. Research that will save lives.
We are so close to a cure for cancer. So close. Close enough to a cure that our children may not ever have to worry about dying from over-producing, vagrant cells that overtake healthy cells and kill them. Close enough that many cancers are already considered "chronic diseases" instead of terminal.
Close enough that even the little bit of money that I am able to spare can help the cause.
Won't you please help, too?
Mark your calendars. Program your TiVo or DVR. 8:00 p.m., Friday, September 5, 2008. Help laugh cancer into submission!!!
Tuesday, July 15, 2008
Ask me no questions, I'll tell you no lies
Today was my seventh 3-month follow-up oncology appointment. For those of you who don't feel like doing the math this late in the day, that's 21 months post-treatment. 21 months No Evidence of Disease (NED). 21 months of living life. Of course, there is always bad with the good. It was also 21 months of waiting for that other shoe to drop. 21 months of worry. 21 months of mental Do Before I Die lists and At My Funeral Memorial Service lists.
I did get a clean bill of health today. My blood work was all normal. My lymph nodes were all fine. I have no bone pain, pulmonary issues nor headaches beyond the norm. In short, I rock Survivorship! Knock wood.
This 3-month appointment was different than the others, however. This time, I asked questions. This time I wanted more than a checkup. I wanted information too.
I've already shared that I purposely avoided IBC information while I was undergoing treatment and why (read all about it in my memoirs, Why bad Focal Points Happen To Good People) also that I don't have a great track record with asking my doctor cancer questions. The last time I worked up the gumption to ask a scary question I DID NOT like the answer. Can you say 90% recurrence risk?
So I started small, with the nurse who took my blood pressure when I asked her to make copies of my pathology reports. I've somehow lost them over the last 2 years. (Besides, amazingly enough, the details were fading and I was no longer sure I had my facts straight.) Wow. She came right back with them. She didn't even tell me I would need to pay a small fee for copies like the old office. So far so good.
When Dr. Villa came in we hugged and I showed her the new pictures of the boys. Then I told her all about this site and how excited I am about it. She asked for flyers or cards - which I have not made yet. My bad. Then we got down to business. Thanks to posting here I've developed the courage to ask the questions I've been wanting to ask for a long time.
I asked her about the original statistics she had given me about recurrence. She had told me most recurrence occurs at 2 and 5 years. And I'm coming up on the 2 year mark. She said that she had forgotten that I was triple negative when she had given me those numbers. The figures for triple negative breast cancer are more like 12 to 18 months. But I am beyond that. And that is very, very good. Perhaps, she says, you've fallen into that niche of ones who sneak through.
More good news. This was working out better than I'd hoped. So I asked about the infamous Cancer 5 Year Mark. "Does that hold true for Inflammatory Breast Cancer also?"
"I'm going to say 'yes'," she said. Yes? Yes! Yowza! Something to work towards!
And I asked about preventive clinical trials that I may qualify for. There are none at the moment. It's nice to know she's keeping her eyes open for me. I've wondered about that for a while now. She did mention two new bits of research that she wants to keep in mind for me.
We will check my Vitamin D level with my next blood work. Studies have shown that breast cancer patients who are deficient in Vitamin D have almost double the chance of a recurrence or spread over 10 years time and are 73% (!) more likely to die. Holy cow!!! It's not about drinking milk. It's about getting 15 minutes in the sunshine without sunscreen daily. Do it! 73% is too huge a risk not to.
She's also closely watching Avastin for it's benefits in preventing recurrence.
I had read about both when they came out so it's nice to know I'm keeping up well enough on my own.
I want to send a big Thank You to every one of the women at Mothers With Cancer. The sisterhood that is forming before my eyes is already having its effects. Empowerment. Strength. And this is only the beginning.
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