A Test of Patience: My Very Personal Journey Through Triple Negative Breast Cancer

From everything you have heard about breast cancer, from the risk factors to treatment to prognosis, you are probably not getting the complete picture. There are many different types of breast cancer, and most women are lucky (well, if you could call anyone with cancer lucky) to get the most common form, estrogen positive breast cancer. This most common form coincides with all the typical risk factors, such as early menses, late childbirth, late menopause, hormone replacement, or anything that would increase your lifetime exposure to estrogen. Prognosis is good if caught relatively early (Stage 1 or 2) and there are all sorts of treatments available because it is easy (well, again, easy in the scope of breast cancer treatments) to reduce estrogen in the body.

With triple negative cancer, everything you thought was true now isn’t. This cancer has no hormone receptors, which means that we have no clue how it grows. We have only known about this cancer for a few years, but researchers are working frantically on trying to understand what exactly makes it grow and what risk factors are causing it. There are a few groups who have a tendency to get triple negative breast cancer: African Americans, Hispanics, Ashkenazi Jews, and young pre-menopausal women with positive BRCA mutations. Obesity has found to be something that triggers it, along with a high fat diet. A recent study was just published saying that those who have had no children have the lowest risk of developing triple negative breast cancer, while those who have had more than 3 children are at the highest risk. Pregnancy seems to spark the growth of this type of cancer. African American women have the highest death rates from breast cancer because they are getting more triple negative cancer, and since most African American women are less likely to get their yearly mammograms, their cancer is found too late, usually when a lump is found and at this point, it is much too late. It is a very sad fact for some women that they don’t have access to health care and must be made to suffer for it.

The main difference between triple negative and estrogen positive breast cancer is that triple negative is highly aggressive and is much more likely to metastasize, and it metastasizes fast, usually 1-3 years after diagnosis. Once it does metastasize, the patient is usually given only 9 months to live because it usually goes right to the bones. Estrogen positive breast cancers are less aggressive and take longer to metastasize, therefore most tumors would not need chemotherapy unless very large. Also, there is a drug called tamoxifen to hold it at bay. For triple negative breast cancer, there is no such drug. So, for those with tumors greater than 5 mm., chemotherapy would be considered in that chance that those metastasizing cells would take route somewhere far from the breast. Even so, chemotherapy is more effective in triple negative cancers, but not 100%. There are those who fall through the cracks, trying everything and ending up dying anyhow.

Good news is that there is a tidal wave of research being done right now on different markers, enzymes, and inhibitors that might play a role in its growth. Adding this to the increased emphasis on yearly mammograms and genetic testing, these tumors are found sooner, like in my case. Another good thing is that they are less likely to recur after 5 years, unlike its estrogen positive counterpart. So, once it is killed the first time, you are unlikely to see it ever again.

In my case, my tumor was found accidentally. When I had my yearly mammogram in December, they found some calcifications which are a warning sign of DCIS (Ductal Carcinoma In Situ), a form of breast cancer completely confined by the duct and not able to go anywhere else. I had my first lumpectomy in January to remove the area of DCIS and within this area, they found a 3 mm tumor. This never happens. Triple negative tumors are very rarely found this small because they would not be felt or seen on mammogram. I am so, so lucky and have found that there are not many women like me in the world (I’ve been going onto breast cancer discussion boards to reach out to anyone out there and have only found a handful). Plus, what is even more puzzling is that I am not Black, Hispanic, Jewish, and I did not test positive for genetic testing. The only risk factor I had was obesity. Since cancer is a great motivator, I have lost 30 pounds so far. My doctor wants me to get down to the bottom of my weight range, so I have at least 30 more to go-my own personal form of chemo.  also, my diet should be no more than 20% fat, which is even harder ot accomplish than weight loss.
Well, the day I received my pathology results was the day I got on the worst rollercoaster ride in the world (and I usually love rollercoasters!). I went from having a Stage 0 breast cancer to a Stage 1a triple negative breast cancer. At first, I thought I would need chemo and mastectomy. I ordered up my wigs and hats and got ready. Then I was sent for a second opinion at a large cancer institute and found that chemo isn’t considered until the tumor is 6 mm, and they said I shouldn’t need a mastectomy. I quickly cancelled my surgery date, then had a third opinion to be sure.

So, here I am today. A week after my re-excision (which was completely pain free, by the way) and I am happy to say that my second pathology report says that there were no abnormal cells found! My surgeon explained to me that my body killed all the cancer cells that were left in the process of healing and inflammation from the surgery. So, I get to keep my breast and will be starting 7 weeks and 1 day radiation next week. I am getting off this crazy rollercoaster and am ready to get on with my life. My only hope is that I never have to look breast cancer in the eye again because if I do and it is triple negative breast cancer, it won’t be so easy the second time. That said, I will be welcoming my radiation treatments with open arms. I will rejoice in all of it, the burning, blistering, and fatigue and anything else that comes up, because I will know that those little bastards will burn, and burn, and burn. So, bring it on! I am ready.

By the way, there are all kinds of journeys and most are exciting and new.  This is one journey I did not want to be on.

Sincerely yours,
The Wingchair Traveller

p.s. Just a note to those of you who are visiting my blog for the first time and are on your own journey through breast cancer. Please peruse my recent posts because there may be some things that I have written that will touch and inspire you as you go through all the emotion and turmoil that only cancer can bring us. Also, don't be afraid to comment on any of my posts to share your own stories. I'd love to hear them!

Me and My Shadow

A shadow has passed over me lately, blocking my sun.  That shadow has a name that we all dread to hear--cancer.  This shadow isn't necessarily the shadow of death per se, but the presence of my own mortality coming to the forefront, becoming a real possibility.  Most of us put our own mortality into a deep pocket inside our minds that we sometimes dare to open in rare moments of introspection, but most of the time, to most of us, time is boundless and, sadly, for most of us, true happiness is just out of reach, but always a possibility, to be achieved in the future, sometime.

When we are faced with our own mortality, happiness is something that we need to reach out and grab immediately.  There is no time to wait and hope anymore.  All those trivial things in life fall away.  Even when observing everyone else going about their lives as usual, we stand by in disbelief about the truly petty concerns of others, like those unwanted wrinkles or those last stubborn five pounds.  Within this passing shadow, a strong, clear light begins to shine on our lives-clarifying things, brightening things, exposing the truth behind all the fiction and unimportant concerns.  My shadow has given me a sense of peace, a need for serenity.  I appreciate things so much more now.  I truly cherish my family and friends and love their unwavering presence at this time when I need them the most.  I think twice before getting angry or annoyed now, or sinking into a state of passivity.  The passionate, forward-moving side of me has been activated.  Even writing now seems senseless, but of course only superficially, when there is so much more I could be accomplishing out in the world, people out there who need my help or guidance in some way.  I now want to reach out and touch as many as I can.

I sometimes wonder if my cancer is just a side effect of my passivity-my inability to take action, to pay attention to my own power, my God-given potential and spirit, the power within my own body to be the best that I can be.  To be honest, my own insecurities and anxieties have held me back in a way, so my life at home has become my safe haven away from potential hurt or fear.  But, nice as it is to be at home away from the hustle and bustle of life, it has only given me the opportunity to hide within a shell of my own making.  I've always believed I was merely simplifying life by leaving it to take care of my family, but my family really doesn't need that much care.  My family needs ME--my presence, my energy, my potential, my strength, not my availability.  It is time for me to move forward, get out into the big world, start breathing again.  My cancer has woken me up from my reverie, enabling me to live a life of my dreams.  Anything is possible now.

When I first found out that I have cancer, I thought, "Why me?".  Now I see it as "Why not me?".  I am human after all.  And for someone who has never quite fit in, I now feel more a part of the human experience of striving and rising to our fullest potential.  Life isn't about our own death.  Let's face it.  We don't get to witness the aftermath.  Life is about what we do with our lives while we are here, right up until that last moment when we finally have to leave.

A Re-Posting of Some Poems from October

I've been a little scared to write lately.  And you'll see why when I re-post these poems written at the end of October, before I had any clue I had cancer.  What it all means, I'm not sure, but this isn't the first time this has happened to me, both in my writing and in dreams that have turned out to be prophetic in someway.  This first poem is called "Tell Me".  Perhaps I was asking to be told about this cancer?  Well, if I was, my prayers were answered..

Tell me that I can stay,

A little longer.

A life formed out of bits of thread and spilled blood

Is just a moment, a flash.

My creative clutter the only proof that I breathe.

Flesh plundered, compromised, sight unseen,

By one bad seed waiting,

For that slim circumstance

To strike and grow in a moment,

Interrupting a long-awaited dream.

We never know until we know,

We are not a given, even if we are forgiven.

I’d love to speak to that cell,

Lone invader of my own universe,

Travel the rivers and canyons of this divide,

Confront him and my swept-up fear.

To understand what he’s after,

Stealing my breath in order to live,

And perish with me.

I'd love to debrief that cell,

Make him squirm,

Will he have one noble reason?

Will I even comprehend why,

He means to use my body as his own,

Home Sweet Home,

For a little while?

I’d love to speak to that cell,

To tell him that I will stay, 
And he will go,

It’s not up to him.

_________________________________________________

On Awareness: A Plea

Does tomorrow melt in your mouth,

Not in your hands,

Like Desire pulling you along by a taut, silken harness,

Only to nestle and caress you within the jaws of the famished world?

Do you tell your Prince to wake you later,

As you languishly linger within the folds

Of a sleep, unblemished by potion?

But, sooner than later, you will need those eyes open wide,

That breath strong and able,

Expanding and contracting for life.

Do you gaze across an open, fertile landscape,

Only to while away in longing,

For that noble Youth,

When all bitter Beauty has is these petals in her void?

All the while, the leaves rustle amongst us, calling out for Winter,

Awaiting to hear his step on the porch boards.

Do your dreams recall a listless longing,

Lying limp and open on the forest floor,

White flood rising from your cool gown,

A sad stream echoing your delirious sleep?

A cold wind blows, suddenly,

harsh and heavy upon your parched skin.

Shivering with eyes aflutter,

You think,

Perhaps, there is another way,

To conceive of this future,

Without falling through the cracks and chasms,

Of a life lived by another.

As you grasp the reins,

You navigate your way,

Slowly, ever so slowly,

Forward.

Latest News: The Good and the Bad

So, which do you want first?  Good news or bad news?  Well, I always like to concentrate on the good, so I will start with that.  I have been accepted into graduate school at the University of Buffalo.  Yaaay!  It has been something I have been working on for at least the last couple of years, and the effort finally paid off.  I am not starting this spring as planned, though.  I am pushing it back to the Fall due to my "bad news".

I have just been diagnosed with breast cancer.  Yes, breast cancer at the age of 42.  I have gotten over the shock of it all after three weeks or so of ruminating about it.  I count myself as VERY lucky.  They caught it on a routine mammogram with no symptoms and, although I won't know for sure until my lumpectomy, it is most probably Stage 0.  In other words, it looks as though it is still confined and not spreading anywhere.  They used to consider this a pre-cancerous tumor, but they have changed their approach and are now calling this cancer.  I will either need radiation or a mastectomy.  I am definitely feeling better about it all, thus I am now able to write about it.  I will be having surgery next week and will know more then.  I figured I needed to get this off my chest and explain to all my followers why I have been very absent lately.  I was on a roll with my writing too!  Oh well, sometimes life throws us curve balls and we just have to adapt and change accordingly.

I have a very important message to all of you out there.  If you are a woman, get your mammograms as soon as you are able because they need to find the cancer BEFORE symptoms appear.  That means every year after 40, or before 40 if you have cancer in your family.  To the men, if you have a lady in your life, urge her to keep up with her mammograms as well.  I am so thankful that I started mine at 39 and have been up on them every year.  They found it as soon as they could.  Please don't listen to the insurance companies' recommendations of starting after 50!  They have ulterior motives.  And, by the way, there is no breast cancer in my family, I am pretty darn healthy (never smoked and drink only occasionally), eat mostly organic and try to live as healthfully as possible.

So, now that I have that off my chest, I want you all to know that I am still here, working diligently on my diet and exercise routine, and plan to be a better person when all is said and done.  Sometimes it takes a scare to force a person out of complaisance, and I see my cancer as a warning.  I do know that what I have been doing with my blog is the right thing and I wish to continue in the future.  I am also excited about returning to school and continuing my research on Austen, Gaskell, and Forster and the relationship of their writing to the architecture and decor of the time.  If you don't see me much over the next few weeks, it's because I am busy with my health, but, count on it, I will return.

Wherever You Are...

I hope you are enjoying the season.  Up here in Upstate New York, winter has arrived.  It is 10 degrees Fahrenheit and, if I must say, pretty darn nippy.   But, contrary to popular belief about the blizzards of Buffalo, it really is truly beautiful, and hardly ever life threatening (unlike those tornadoes, mudslides, earthquakes etc. etc. found in other parts of the world).

Skating on Park Lake (Delaware Park), c. 1910.
Image from Private Collection

The snow was falling pretty heavily today.  Not the kind that sticks to the road creating treacherous driving, but the white, fluffy stuff that just blows across the road and just looks so pretty.  I had a miraculous moment this morning.  What I can only describe as a "stag" crossed a suburban main road today directly in front of my car as I was driving.  He was the biggest, most astounding deer I have ever seen!  Just his antlers seemed as big as my car.  Then, in a flash, he was gone.  

I am sending these lyrics out to you in honor of winter moments like this, whether you are lucky enough to be basking in the sun, or have the great pleasure of a white winter wonderland.  By the way, you can listen to this song as well, if you just scroll down to the bottom of my blog and find it at the beginning of my playlist.  Happy Holidays and a Wonderful Winter to you All!

Snow by Loreena McKennitt


White are the far-off plains, and white
The fading forests grow;
The wind dies out along the height
And denser still the snow,
A gathering weight on roof and tree
Falls down scarce audibly.


The road before me smooths and fills
Apace, and all about
The fences dwindle, and the hills
Are blotted slowly out;
The naked trees loom spectrally
Into the dim white sky.


The meadows and far-sheeted streams
Lie still without a sound;
Like some soft minister of dreams
The snow-fall hoods me round;
In wood and water, earth and air,
A silence everywhere.


Save when at lonely intervals

Some farmer's sleigh, urged on,
With rustling runner and sharp bells,
Swings by me and is gone;
Or from the empty waste I hear
A sound remote and clear;


The barking of a dog, or call
To cattle, sharply pealed,
Borne, echoing from some wayside stall
Or barnyard far afield;


Then all is silent and the snow falls
Settling soft and slow
The evening deepens and the grey
Folds closer earth and sky
The world seems shrouded, far away.


Its noises sleep, and I as secret as
Yon buried stream plod dumbly on and dream

At Home with the Georgians

Finally, I believe I have returned from my very extended hiatus.  I did not plan to be gone this long, but a brief illness had me unable to write, let alone think, for a little while, and of course, the holidays are in full swing and it is quite difficult to find the time to sit down at my laptop for longer than it takes to go through all my e-mails (which are a lot and mostly Christmas advertising).  I wanted to come back with a bang, though, and I think I have found it!:

http://www.bbc.co.uk/i/wh6lz/

Click on the above link to view the new BBC series "At Home with the Georgians"  hosted by Amanda Vickery.  It is so spot on with my own research interests and is quite an enjoyable look at life, married and unmarried, during the Georgian period.  We even get a privileged glimpse of Chawton Cottage, Jane Austen's home for many years and where she wrote most of her novels.


If, like me, you are not from the UK, you need to download Expat Shield in order to view this series.  It will then think you are indeed an "expatriot", so you then, as a qualified Brit, would be allowed to view the show :).  Happy viewing, and enjoy!
http://www.expatshield.com.

Brief Interruption...

I know, I know...I'm on break and not supposed to post, but I wanted to announce a giveaway on Stephanie's Written Word blog.  She is giving away three copies of The Distant Hours by Kate Morton.  I am pretty excited about this book, since I loved her other book, The House at Riverton.  Check out Stephanie's great review, also.

Good luck!  Since there are three copies, I hope you win too! ;)