Roll Call

November 27, 2012

Lets get everyone to do a roll call….  Holiday check in!

I’m good.  Healthy.

My mom is dying…  lung cancer/emphysema.

I’m missing my MWC friends…  particularly Susan.  Her passing took all the air from my sails.

Anyone else?

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Meanings by Stella

March 11, 2012

I never asked “why me”.  I always thought “better me”.

Today is one of those days that reinforces that.

We have a good friend whose girlfriend has been diagnosed with breast cancer.  I’ve never met her.  But through him I am able to help.  I can offer advice.  Help for nausea.  Advice on hair loss.  Disability is available.  It’s a reprieve.  Take it.  I have hats and beanies.  They are hers for the taking.

It feels good.

It feels right.

It feels like that year or so five years ago weren’t for naught.

I don’t pretend to know God’s plans.

I really have no credible idea why I am still here and others are not.

God knows.  He has vision.  He sees the big picture.

I know I’m the Cheese.

I know not everyone survives.

I know I may not always survive.

But I also know that I can help.

I offer hope.  I offer help.  I offer insight.

How can I run from that?

Who can really ask for more from life?

cross-posted to I Can’t Complain Any More Than Usual 


Godspeed, Susan by Stella

February 11, 2012

I’ve been staring at this blank screen for days… ever since I got the news about Susan Niebur.  The words to pass the news, well, they just haven’t come…  I wish they didn’t need to.  

WhyMommy gave up her five year fight against Inflammatory Breast Cancer on Monday, February 6, 2012.  Her husband posted a touching final post on her personal blog, Toddler Planet.

It just doesn’t seem that mere words are sufficient to pay tribute to one such as Susan.  Well, maybe I feel that MY words aren’t sufficient.  After all, I only knew WhyMommy, the blogger, the cancer patient, the advocate.  The part of herself that she shared with the world at large.  I only met her once in 2007.  I am very sad to say I didn’t know her personally.  And yet, she changed my life.  

The words to memorialize her for the world just won’t come.  Others have been far more eloquent on that score than I could ever be.  The only words I have are those for Susan herself; words I couldn’t share with her while she was still here because mourning was not what I wanted between us at the end.

 

My very dearest, Susan – 

This is the second letter I’ve written to you.  It is no less heartfelt than the first.  Just over four years ago I was troubled to read that you thought you were dying.  I thought you might be giving up.  Heh.  How very, very wrong I was.  

You stood up from that low moment in time, brushed yourself off, and stepped out on faith.  You chose to live with cancer instead of die from it.  You defined cancer instead of letting it define you.  I read along with the rest of the blogosphere as you pushed at boundaries in the cancer world.  I marveled at your mad advocacy skillz.  I envied your bravery, your passion, your tireless drive.  I grabbed your coattails and held on… as Mothers With Cancer was born.  

I have been privileged to share in even that small portion of the changes you orchestrated in the breast cancer world, the eyes you opened, the women you educated, the lives you most likely saved.  You have been a mentor in all things:  advocacy, motherhood, loving, living.    In short, I am and have always been, awed by you.  

I will miss your voice, Susan.  I mourn the loss of your gentle guidance and insight.  I will never forget the lessons you taught me.  My world, the whole world, is better because of you.

Godspeed, my friend.

 

Here are a few pins from Susan.  They are pretty self explanatory.

 

 


The “C” Word by Stella

January 25, 2012

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 I Can’t Complain Any More Than Usual


Until we meet again…

December 10, 2011

A few personal words about our Judy’s passing…

To say I was shocked by Judy’s passing would be a gross understatement.  Yet, I guess, I knew it was coming.  I just thought she had a few more months.  Judy was special to me.  She was my first…  the first person with Inflammatory Breast Cancer I’d ever encountered.

I remember well how it felt to find posts from IBC survivors that were years old with no updates available.  I thought to myself how wonderful it was that they’d survived X number of years… but where were they now?  Alive?  Dead?  It turned the potentially hopeful, inspiring stories into landmines of doubt and fear.  At that time, I vowed to be an active, living voice of an IBC survivor on the internet.  Enter Judy.

I found Judy’s blog after I’d returned to work from my own cancer treatment.  She had just been diagnosed.  She was already metastatic.  I made a concerted effort to comment on her blog.  Hoisting myself as a flag of hope at the finish line of treatment:  cancer-freedom.  Of course, that was naive of me.  I had little understanding of metastatic disease back then.   But still, I made sure I was that living, breathing voice of survival from such a deadly disease.  Through Just Enjoy Him I found other Inflammatory Breast Cancer patients, notably, Susan (WhyMommy).   Seems we all had the same supportive idea.

Judy was the beginning of my advocacy.  She was my window into the dark side of breast cancer.  She was my first reality check…  the first time I realized that attitude and strength of will were not the impenetrable armor against cancer that the media would have me believe.

Following Judy has not always been pretty.  She struggled with anger and fear that I never truly experienced.  But inevitably, her faith in God lifted her up again.  She lived a roller coaster ride of plunging health and spirits followed by glorious soaring heights.  That is life.  That was Judy.  That is metastatic cancer.

I will miss her voice.   I will miss here spirit.  I will miss her face smiling back at me from my monitor.  I will miss her planking.  Heh.  I will miss Judy.  But I’ll see her again someday.  What a glorious day that will be.

 


Another IBC Angel is watching over us today

December 10, 2011

Two nights ago I logged on to Facebook to find that our own Judy of Just Enjoy Him had entered hospice care.  Barely an hour later she was gone.

Judy was, tragically, already metastatic when she was diagnosed with Inflammatory Breast Cancer in 2007.  She fought this horribly aggressive cancer for 4 years with grace, humor and a double dose of faith that we could all hope to attain.  Judy’s tale wasn’t always pretty but it was unfailingly honest.

She has left behind her husband, Frank and their 10 year old adopted son, Nate.  Please keep them in your prayers at this difficult time.

Please feel free to leave your memories of Judy, favorite stories and words in the comments below.  I’m sure her husband and son will take comfort in them.  I know I will.

 

 


Milestones by imstell

October 27, 2011

Hey, Everyone!  It’s been a while since I’ve logged on here.  That’s good news because if I was having active cancer issues I’d be on here daily. 

So, 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 I Can’t Complain Any More Than Usual