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.

 

 

Advertisements

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.

 


Grave matters

November 23, 2011

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)

November 22, 2011

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:)


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


Cancer Doesn’t Come to the Party Alone (by Judy)

October 21, 2011

A Facebook friend of mine who has lupus once told me

Lupus doesn’t come to the party alone

and went on to list other ailments she has had since she was diagnosed with lupus. I feel very much the same way about my cancer.

As most readers of my blog know, I was first diagnosed with Stage 4 Inflammatory Breast Cancer (IBC) in January 2008 after a month of tests. IBC is a rare and aggressive form of breast cancer. One explanation of IBC can be found at the Mayo Clinic website.

Anyways, my cancer certainly hasn’t come to the party alone. Throughout my treatment, I’ve been diagnosed with ailments that I either wouldn’t have without the cancer (or treatment) or that would have taken longer for me to get. Since I was diagnosed with IBC, I’ve also been diagnosed with arthritis, diabetes, and a pulmonary embolism (a blood clot in my lungs). It’s possible that I would have eventually had arthritis and diabetes because they run in my family. However, I suspect they would have come later in life without my cancer and the grueling treatment regimens I’ve endured. The pulmonary embolism is a direct result of having cancer, as my oncologist told me. I take medication for each of these conditions.

In addition, my teeth and eyesight have worsened because of the cancer and treatment for it. Currently, I also have dermatitis (a rash on my face and other places on my body that looks like pimples) and hand-foot syndrome.

Don’t get me wrong. I’m not trying to complain; I’m simply stating facts. Is this cancer different than cancer(s) that other people have? Well, yes. Each cancer patient, even each metastatic IBC patient, responds differently to cancer treatments. My treatment is individualized to me and my cancer and other conditions. I meet with my oncologist once every four to six weeks to see how things are going — what side effects am I having, how does my bloodwork look, etc. She is wonderful at asking questions specific to me, and I feel comfortable asking her about anything.

One place you can go to find out information about cancer treatment is a website called Is My Cancer Different? Is My Cancer Different includes sections on Individualized Cancer Treatment, Frequently Asked Questions, and Expert Insights. Each section includes subsections full of information from patients, medical professionals, and scientists that can help someone who is starting out on their cancer journey. It can even answer questions — or provide reassurance — to those of us who are (or feel like) old-timers in the cancer community.

I am so glad that my oncologist subscribes to the notion that cancer affects everyone differently. As regular readers know, I’m currently on a chemo regimen that works well for me. However, as my oncologist told me, some women can’t tolerate it. She also told me that some women have been on this combination of drugs for three years or more. That would be a good thing, of course, because I’ll be on this regimen until it stops working for me. At that time, she’ll find another chemo regimen for me. She’s told me that a number of women can live for “many years” with my condition. I haven’t yet – nor may I ever – ask for her definition of “many years.” You know, I have that nine (almost ten) year old son I’d like to raise to adulthood, and of course, I’d love to be here on this earth beyond that time. I just don’t know what the future holds.

No, my cancer – unfortunately – didn’t come to the party alone . . .

even though there was no invite.
___________________________________
Cross-posted to Just Enjoy Him.