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.

 

Grave matters

This post is cross-posted from ‘Get Out Gertrude’

A week and a half ago, I took YD to visit the graves of her Poppa (OH’s dad) and her godfather K, both of which had passed away in 2000.  It had been one of the things on the list of things we had written earlier in the year of things she wanted to do when she came home for the weekends but we hadn’t got round to it until now.

I had a little bit of ulterior motive taking her this time, with the progression of the tumours in my liver and no guarantees that the last couple of chemos we have got to try will give us control for much longer, there has been more thought, and talk, about the virtually inevitable outcome to this story.  As YD lives away from home in a residential supported living environment to a certain extent she has been shielded from the worst of the chemo side effects and we have been able to keep the whole ‘cancer’ thing a little less scary for her.  But this means that she doesnt know , unlike her two older sisters that this is likely to turn terminal at some stage in the future.

As an aside, I personally think in staging cancers now there is long term survival, control and even sometimes some sort of remission acheived in metastatic cancers (Stage 4).  There needs to be a stage 5 introduced where you have exhausted treatment options and are in palliative end stage.  Stage 4 could be seperated into Stage 4a (control and shrinkage of the tumours as to be negligible) 4b (stable no growth) 4c (progression but still treatment options available )

Anyway, in discussions with L, who is the manager of the houses in the residential service that YD uses, there has been discussion around how much we tell YD and L has suggested we tell YD more.  I feel that at the moment when things are so up in the air time-wise, and while I am still fairly active it would just confuse her to talk about me dying when she deals in very concrete concepts and time-frames.  We have told her with this latest news that the cancer isn’t going to go away and that I have to change medicines and the new medicine will make me lose my hair again.  She was quite blase about the news as to her nothing much has changed then in the last 3 years.

Taking her to the visits to Poppa’s grave on Saturday and K’s grave on the Sunday (they are buried in two different cemetaries, in opposite directions from our house) allowed to us to have a talk about death in general.  She knows that Poppa and K were buried whereas my parents, who died in 2001 & 2004 were ‘turned into dust’ (cremated).  She expressed a wish to be buried herself and asked where she might be buried.  She also asked where I would be buried when I die, which helped me make up my mind between burial and cremation for myself, as she expressed a wish to be able to visit my grave when I die.  So although YD doesnt know that my death is likely to be sooner than she expects, I feel like we have done some preparatory work around it.

After visiting K’s grave on the Sunday we went to a nearby mall that we had not been to for a while. We did some Christmas shopping and surprisingly bumped into people we knew.  Usually when we go out it is when YD gets tired that the outing ends.  This time we left the mall when my fatigue etc kicked in.  YD was very grumpy about leaving and coming home so in the car I reitierated how I feel sick and tired, because she only sees me when I am up to doing stuff with her I dont think she realises just how much my health is compromised.  I have warned I might get more sick and tired and that she can’t expect me to take her out all the time.  I think that is all the preparation I can do for now.

Healing so far so good (by Lyn)

I know I am not much of a blogger these days.  I even took my personal blog down while I work on a different one, but I am not finding the desire to work on it.  I kind of put myself out there to the world, cancer and personal warts and all, and am going through a phase of privacy.  I still want to share and support others, but I find that I have this deep need to be ‘normal’ for a short while.  I’ve been focusing on things like playdates and moms nights out, and going back to school for a different degree, etc.  I felt guilty for not keeping up with my cancer pals like I should, and then I remembered that no matter what, I will always belong to this community.  If we all lived in the same neighborhood, I guess my role would just change from a weekly meeting to dropping off food a couple times a month.

For an update, I’m 2.5 years out from my IBC diagnosis.  I had a double latissimus breast reconstruction in July and I had my last expansion last Monday.  The next step is healing and letting the radiated skin continue to change and heal, then we will do a fat injection.  Though I’m not a fan of surgery by now, I’m kind of looking forward to the removal of fat from my stomach and putting it in my boob.  Then it will be another 6 months after that I hear, when we will attempt the implant exchange.  I’m fine with taking the time to make sure it’s done as best as it can be.  I can see the visual changes in the tissue on my left side change weekly, and hopefully by the time the implants are in it will be supple enough to pass for a breast.  The good news is that I’m no longer calling it a ‘frankenboob’ which my plastic surgeon appreciates.  I’m taking pictures along the way and will publish a photo show at the end of it all.

My oncologist left the practice a while ago, and I finally met with a new one last week.  We’ll see how it goes, I know I don’t have to explain to you all how it is meeting a new doctor unfamiliar with you much less wondering if they are familiar with your disease.  Other than that, I’m good.  I find myself relieved the older my children get, my 6 year old son is in first grade and my daughter will be 5 on Valentines day.  Now that there is a small hope they will remember me if I die tomorrow, I relax a little.  Anyone play bunco?  I played that for the first time last month and it was fun!  See, that’s the type of thinking my brain goes to these days, I think I am serioused out.  the death of my mom from cancer followed by my own diagnosis a year later at age 30 followed by my marriage falling apart, I think I’m done.  I want to spout something wise, but I end up thinking ‘hey let’s make cookies and watch a good movie’ instead lol.  It’s a phase I know, but as someone who’s gone through a LOT of phases, I can’t say it’s any better or worse than a cancer focused one, it’s just different.  I wish you all lived closer so we could have a huge cancer warriors only bunco night complete with cookie exchange!  Then I could combine it all and feel somewhat normal again:)