Roll Call

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?

Meanings by Stella

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

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

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…

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.