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

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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 

Advocacy and lymphedema sleeves

Yesterday, Susan made a big announcement.  She is one of my cancer sisters, founder and co-contributor at Mothers with Cancer, blogger at Toddler Planet  and Women in Planetary Science and friend.  She is also an astonishing advocate for, well, everyone. 

Susan has  lymphedema in her arm as a result of having lymph nodes removed from under her arm during her mastectomy.  It’s a real issue.  Lymphedema causes swelling in the affected area due to the build up of lymphatic fluids.  Once swelling has occurred it can really only be reduced a certain percentage.  In other words, the area will never again return to normal size.  The trick is to keep the are from swelling in the first place.  This is where  LympheDIVAs come it.  They have taken a sterile, ugly medical appliance and made it beautiful:  the compression sleeve.  I can’t imagine what it would do to my self-image if  I had to wear something like this all day, every day (not to mention what it would do for my hot flashes!).

   

When you buy a sleeve from LympheDIVA, though, you can make it your own, match your outfits, show your personality, feel beautiful

 

   

Of course, there’s a price for beauty.  Isn’t there always?  And LympheDIVA sleeves aren’t cheap.  In fact, as Susan’s lymphedema Therapist pointed out to her, many women can’t afford to buy sleeves at all, which causes the tissue in their arms to harden.  Here’s part of an email Susan sent to me:

Last month, I was lying on the table having my arm worked on as my lymphedema therapist tried to reduce the swelling in my arm.  I try to zone out a little, as it’s not all that comfortable, but we got to talking about my pretty lymphedema sleeves, which you guys have seen me wear around town and at BlogHer. 

Apparently, I’ve been living with my head under a rock, as I was surprised to hear her say, “so many of my patients can’t afford lymphedema sleeves, and their arms are so much harder.  The tissue actually changes, and their arms are stiff or puffy no matter what I do.”

Can’t afford lymphedema sleeves?  Well of course that’s true, isn’t it, as they cost $100 and up for each arm, and it’s important to have two sets – one to wash, and one to wear.  I started rolling solutions around in my brain.

So, being the giving woman and problem-solver that Susan is, she began looking for programs to help those in need in her little corner of the world.  She found none.  By happenstance and good connections, she was introduced to a foundation, Crickett’s Answer, who agreed to work with LympheDIVA and donate some sleeves and gauntlets for women in need.  Next thing you know, $12,000 worth of  lymphedema sleeves are now available through Crickett’s Answer for these women!!!

This is awesome!  Wonderful!  Amazing!  And generous!  But here’s the part that floors me.  Susan, is not just a cancer survivor, she is a current cancer patient.  She has two small boys at home, she works for NASA, and she’s had a recurrence of  her Inflammatory Breast Cancer.  She mothered and worked and rested throughout the spring and summer while she also underwent chemotherapy and radiation for a regional recurrence.  Now, this week, while making numerous phone calls to foundations, organizations and businesses in order to help other women , she had a PET scan which revealed six small spots on her lungs

I am heartbroken.  For me and for Susan and her family.  For the world really.  Susan is one of the good ones.  She is tireless in her advocacy.  She is dedicated to her family and her work.  She is generous to a fault.  And she will more than likely die of breast cancer. 

The bright spot in this scenario is that Susan is creating a legacy of epic proportions.  (Yes I said “epic”  even if it is a banished word!  I’m a rebel like that.)  She is raising the bar.  She is a role model in every sense of the word.  She is that better person that makes me want to be one, too.

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!!!

Pregnancy and IBC

An unusually high percentage of Inflammatory Breast Cancer (IBC) patients were pregnant or breastfeeding when they first developed symptoms.  I was.  In fact, Danny’s refusal to nurse on my right side was the very first sign that something was wrong with my breast.  Of course, I assumed his blindness was giving him positional aversion.  I wish I’d paid more attention.  Every other symptom came from there; most could be explained away as results of weaning.

This morning I read this article by Health Day.  It talks about how pregnancy activates a group of genes that control inflammation.  Their study shows there may be a connection between those genes and  Inflammatory Breast Cancer.

There is an interesting and contradictory history between pregnancy and breast cancer.  Most often women hear that pregnancy and breastfeeding help prevent breast cancer.  This is true… to a certain extent.  The younger a woman is when she has her first child the better the preventative effect.  However, a first child born after age 35 nets the mother roughly twice the risk of developing a breast cancer in her lifetime.  That fact alone could account for the increase in breast cancers in our generation.

The National Cancer Institute has a comprehensive list of the factors which will increase or decrease a woman’s risk of breast cancer.  It essentially breaks down to this, to optimize your chances of avoiding the beast you should have at least two kids at a young age and you should you should breast feed each of them for a year or longer.  And if you want to protect you children from breast cancer, too you should have the foresight to develop pre-eclampsia while you carry them.

That is all pretty much common knowledge.  What is not commonly known, however, is that a woman’s general risk of breast cancer is increased after a she gives birth.  Temporarily.  For a few years.  Contradictory.  So, if a mother can make it through the few years of increased susceptibility she decreases her overall chances of breast cancer.

Feels like it’s all out of our control, doesn’t it?  Except for the breastfeeding part.  That’s not completely true.  We can limit our alcohol intake.  We can maintain a healthy body weight because estrogen is created by fat and fat by estrogen.  It’s an infinite loop.  Gah!  Also, being physically active can reduce risk and eating lots of fruits and vegies.  Don’t you hate it when your parents turn out to be right about everything???

It’s not all bad news, however.  The NCI is doing research on how to mimic the protective effects of pregnancy.  Maybe if they can understand that will be able to use the knowledge for preventative strategies.

I pray for God to guide their research.  I pray for the day no other woman must lay down her baby and walk into a cancer clinic.

Cross posted to Mothers With Cancer.

Walk the walk

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

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.