The “C” Word

In October 2011 I reached the 5 year mark.  Cancer-free for five fabulous years!  They certainly weren’t five worry-free years, by a long shot!  Early last year my blood work started showing some changes.  My Alkaline phosphatase levels were fluctuating.  They would go higher than normal, at my next appointment would drop back to nearly normal again, only to raise fairly drastically the next go round.  Very much like a roller coaster – a very not-fun roller coaster where I worried about liver or bone metastasis.  Of course, I got my very permanent, very meaningful 5-year tattoo in October anyway because I’m very, very stubborn like that.

So, this morning I had my 3 month follow-up appointment with my wonderful Oncologist, Dr. Villa.  She’s wonderful!  Incredible!  Awesome!  I fully and completely credit her (and God, of course) with saving my life.  I’ve even forgiven her for scaring the bejeebus out of me when I asked her what my recurrence risk was way back when in May of 2006.  She didn’t even blink an eye when she said, “90%”.  Jeez!  You could sugar coat it a little, Lady! 

Anyway, back to the appointment.  I’ve been very glad to have one coming up since I’d developed some sensitivity in some of my lymph node areas.  I’ve been losing sleep over it.  At least I think that’s what has been disrupting my night-time routine.  Maybe I’ve been worried.  Maybe a little bit.  Maybe.  So, imagine my surprise when she walked in to the exam room and told me that she was going to consider me cured. 

Wha?  Huh?  Did I miss something? 

Yeah, you heard me right!  The other “C” word. 

Cured! 

CURED! 

Cured, as in, gone.  No more cancer.  Not ever. 

OK.  Am I the only one that thinks this might be a bit of calling up the devil?  Scary stuff…

So she explained herself.  First off, my rogue Alk Phos levels have returned to normal.  In fact, my labs are “perfect”.  <Insert pride and preening here>  Then there’s those odds… the 90%…  Turns out most of those turn out to recur in the first 18 months.  Particularly the Triple Negative Inflammatory Breast Cancer patients, like me.  However, turns out that a small percentage of Triple Negatives have cancers that are particularly susceptible to chemo.  Women with this small percentage of Triple Negative cancer who manage to make it to the three, four and five-year marks also tend to never recur.  Never. 

Joyous of all words, that “never”. 

So here I sit with 5 years and 3 months of cancer-freedom under my belt and a new “C” word behind my name. 

Stella, cancer patient.

Stella, cancer survivor.

Stella, cured.

Cross-posted to Mothers With Cancer

Milestones

I’m here today to share some great news.  Last week I hit my 5 Year Survivor mark!  What a milestone!  I do feel blessed to be here, in this place, standing in the sunlight of cancer-freedom!  The odds were against me being here.  Inflammatory Breast Cancer (IBC) is not a kind and gentle cancer.  The odds moving forward aren’t really much better but I’m confident in my ability to survive again! 

Five years ago I was given a 90% lifetime risk of recurrence.  I don’t think that has really changed after 5 years (but I’ll be sure to asked my Oncologist when I see her next!).  Unlike other breast cancers where recurrence drops dramatically after the 5 year mark (75% of recurrence occurs in those first 5 years), IBC does not.  Depending on which study you read, the overall percentage of women who reach 5 years  survival is somewhere between 52% and 56%.  That is not necessarily Disease Free Survival (DSF) like mine.  These figures include people like our own WhyMommy who are living with metastatic disease (Metavivors), but living nonetheless.  Still, in the not-so-distant past women with IBC survived only an average of 18 months after diagnosis.  We’ve come a long way, Baby! 

Yet there is still so far to go…  Survival rates for Inflammatory Breast Cancer at 5 years is roughly 54% (I’ll split the difference in the studies).  10 year survival rates are 35% and drops to 28% at 15 years.  Staggering!  Only 28 of every 100 Inflammatory Breast Cancer patients will live 15 years beyond their diagnosis.  These are horrible figures for a young woman’s disease! 

On to better news…  I celebrated my AWESOME MILESTONE with a big party and a tattoo to commemorate!

Don’t ask me why it says “in” counting…

  

Survival Tattoo

The pink ribboned butterfly represents my metamorphosis from cancer patient to cancer survivor.  The dandelion holds the wishes for my cancer sisters’ complete recoveries.  The floating dandelion seeds are for each of my years of survival (there are supposed to be 5 but I need it touched up).  The white (pearl) bird is for my Grammy who recently died of lung cancer.  The fuchsia one is for Andrea (Punk Rock Mommy) – my first IBC loss.  And the pink bird is for Sarah of Sprucehill whose passing hit me so very hard.  I hope to add many, many more floating seeds over the years and no more birds.  Ever. 

More news:  I’ve added a link on the HELP page for a Care Calendar.  My gf is using it for meal sign ups.  It’s easy peasy and it’s FREE! 

Cross-posted to Mothers With Cancer 

Good News for the Triple Threat

Finally!  Some good news about breast cancer from CancerConnect.  Well, at least for me… and all the other women out there who are Triple-negative and carry the genetic mutation BRCA1 or BRCA2.  Hurray! (Never thought I’d be saying that!)  That’s ME! 

For those of you lucky enough to not travel in cancer circles I’ll let you know what being Triple-negative means in breast cancer terms.  Most breast cancers grow when exp0sed to estrogen or progesterone.  This is called Hormone Receptor-positive breast cancer.  Patients with this type of breast cancer will most often be put on medication (hormone therapy) to block the effects of these hormones for 5 years after chemotherapy/radiation.  Also, about 25% of breast cancers are HER2-positive.  That means the “whatever” (human epidermal growth factor receptor 2, blah, blah, blah) in their bodies that controls cell growth and reproduction is working in hyper-drive.  These patients are treated with therapy to slow these agents. 

One would think that hearing cancer and negative in the same phrase would be a good thing.  Not so for Triple-negative breast cancer!  Instead, it means that there are less treatment options because there are no readily identifiable instigators.  Just to add insult to injury, Triple-negative cancer is more aggressive than others as well. 

I have already drawn the short straw in the genetic lottery by being a possessor of the BRAC2 DNA mutation.  And I have a Triple-negative breast cancer.  That makes me one of roughly 20% of all breast cancer patients.  AND I have Inflammatory Breast Cancer, comprising a mere 5% of all breast cancers. 

Geez.  I wonder what the odds of that are?

Check this out though…  The good news is that we rare Triple-negative birds seem to have a lower 5 year recurrence rate than other BRCA1/2 carriers.  Huzzah!  And just in time for my 4th Survivor Anniversary tomorrow!!!

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 I could 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 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:

• 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)

If you want a great visual go to Lemonland.

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

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.

Medicine/Medical.

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.

 I still think it sounds pretty ominous to me!  But I guess I’ll forgive all doctors in general – just this once.

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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!

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…

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!

It’s hard to believe that was nearly 3 years ago…

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

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