Beans, Beans, the Magical Fruit...

About six weeks ago, the Monday of All Surgeries, I had blood drawn for genetic testing.  Genetic testing isn't routinely ordered for those diagnosed with breast cancer except in certain circumstances (young age, multiple diagnoses, or where a genetic mutation is suspected).  Surprisingly, only about 5% - 10% of breast cancer is caused by genetic mutations; the rest of us have either a genetic component not yet discovered, or we've been dealt a shitty hand in the poker game of life.  Breast cancer is not directly attributable to lifestyle choices (such as smoking) although there are known risk factors (the first and most prevalent being a woman), and I hesitate to call it "bad luck" as there are likely reasons we don't yet know about, and quite possibly can't control.  It just is what it is.

With a second incidence of cancer in such a short timeframe, the question becomes whether there's a genetic mutation involved.  Those with a BRCA-1 mutation are at higher risk for, and higher incidence of, Triple Negative breast cancer.  Having a BRCA-1 or BRCA-2 mutation also puts one at higher risk for recurrence (typically contralateral, or in the opposite breast).  Genetic testing would give us more information about my cancer, including additional risk factors for ovarian cancer, as well as information to share with my family members to assess their risks.

We received happy news at our last chemo appointment - my genetic test results came back negative.  No BRCA-1 or BRCA-2 mutations, no other genetic mutations, not even a hint of an "unknown variant."

So I fall into the Shitty Poker Hand family.  I'm not unhappy about this news, however, as it means my family members are not at higher risk for breast cancer or ovarian cancer.  It's the only gift out of this mess that I can give them.

The only reason I had held out hope for a genetic mutation was as an explanation for this new cancer.  My concern (and that of my doctors, as I'm learning in our conversations), is that a non-mutation "poker hand" recurrence means we're dealing with something different and probably aggressive, and that's Shitty, too.

Because there's no reason for it now.

So since this new diagnosis, the Big Question has been this:

Is this a new primary cancer, or a recurrence of my previous breast cancer?

The answer is unequivocally no.  And yes.  

During our visit with UofM a few weeks ago, the oncologist shares their explanation of how this cancer both is, and is not, the same as before.  As often happens to me when I am overloaded with stimuli and information (or in a staff meeting), my mind starts to wander.  I hear her words and understand what she's saying, but because I am an exceptionally visual person my brain is furiously reaching for examples of this explanation, tangible things I can see and touch to make this more understandable to my BusyBrain.  I see apples and oranges, catepillars and butterflies, Yin and Yang, and finally...

Jelly Beans.  My cancer looks like an Easter basket filled with jelly beans.

Seriously - my mouth starts to water (mmmm, popcorn-flavored...) as I envision a bowl of brightly colored jelly beans.  Pinks!  Blues!  Greens!  Oranges!  All the flavors of the rainbow jumbled together, representing the various estrogen and progesterone receptors in my cancer.  As the oncologist continues her explanation, the bowl of beans changes colors and size, shifting proportions and dimension, moving from old-cancer to new-cancer.

Of course.

Let's pause for a little science-y stuff...

Each breast cancer cell has two hormone receptors: estrogen and progesterone.  These receptors determine whether the cancer is "fed" by these important, naturally-occuring hormones.  While estrogen plays a vital role in women's bodies - protecting our bones from breaking and our hearts from disease - if it's fueling our cancer it becomes dangerous.  There are medications (like Tamoxifen) to selectively inhibit estrogen, thereby diminishing that fuel for the cancer (and throwing us into instant, hit-a-brick-wall, unpleasant menopause).  Progesterone (PR) is the red-headed step-child of the hormone-receptor status of cancer cells.  Important, yes, but not considered quite as important as the Big ER.  Like ER, PR can be either positive (PR+) or negative (PR-).

Each cancer cell also has a receptor for a protein called Human Epidural Growth Factor 2, or what we fondly call Her2.  If a cancer cell has a gene mutation which makes an excess of the Her2 protein (which fuels cancer growth) it is considered positive, or Her2+.  There are targeted therapies such as Herceptin and Perjeta for Her2+ cancer.  Only about 20% of breast cancer is Her2+; the remainder is Her2-, or cancer that does not overexpress the Her2 protein.

Receptor status drives treatment, so samples are stained and examined by a pathologist to determine the percentage of cells that are estrogen-receptor positive (ER+) and progesterone-receptor positive (PR+).  Either of those receptors can range in positivity from 100% to 0% (for instance, 95% of cells could be ER+, meaning the remaining 5% would be ER-).  Because ER+ breast cancer has more treatment options, the standard theory is that any positivity means the breast cancer is considered ER+.  Breast cancer is considered ER- when 0% of cells stain positive for estrogen receptors.  Her2 is not stained for percentage, but tested for overall positivity or negativity.

These three receptors occur in every breast cancer cell, and can occur in a variety of configurations, including:

• ER+/PR+, Her2- (the most common form of breast cancer)
• ER+/PR+, Her2+ (Triple Positive, about 10-20% of breast cancer)
• ER-/PR-, Her2+ (Her2+, about 5-15% of breast cancer)
• ER-/PR-, Her2- (Triple Negative, about 10-20% of breast cancer)

To complicate matters even more, breast cancer is a hetergenous disease, with a variety of different cancer cell configurations within each tumor.  Not every cell in a tumor will test exactly the same.  The important information to know is the ER status and Her2 status because these determine risk and treatment. 

So...all this science-y stuff is the conversation we're having with the oncologist at Uof M about how my cancer is, and is not, the same as before.  Science-y break over.  Back to our beans...

Four years ago my initial pathology sample report noted my breast cancer had both estrogen and progesterone receptors.  In my case 50% of the cancer cells expressed estrogen receptors, and only 10% expressed progesterone receptors.  Two tests confirmed that my cancer did not over-express Her2, so I was negative:

After that initial pathology, the Oncotype DX test was completed using a larger sample from my lumpectomy.  The results of that test indicated that I had fewer estrogen receptors than found on my initial pathology report, and that no cancer cells (or very, very few) had any progesterone receptors, and so my hormone status changed:

Fast forward four years:  This time around, both initial and repeat pathology testing revealed that none of my cancer cells had any hormone receptors, so my cancer is much more tropical and exotic than before:

The oncologist explains:  My original cancer was 50% ER positive, but also 50% ER negative.  It was 10% PR positive, but also 90% ER negative.  So in my mind, I'm thinking - this is what my original cancer must have looked like:  50% of the cells are ER+ (Very Cherry) and 50% are ER- (Orange Soda).  90% are PR+ (Sour Apple), and 10% are PR- (Berry Blue).  All of them are Her2- (Cream Soda):

After initialy surgery a few stray cells must have been left behind.  It happens.  So again, I visualize - this is what might have been left after surgery:

This is one of the reasons we do chemotherapy - to systemically destroy any remaining rogue cancer cells.  Maybe now what's left looks something like this:

Then we do radiation, hopefully eradicating any last remaining local cancer cells - but probably leaving something behind that now looks like this:

So we've destroyed almost all of the cancer cells that were left behind.  But those that remained were tough, and strong, and determined.  Like fucking Cancer Cockroaches they survived toxic poisons and photon radiation.  And eventually, they woke up and started to thrive again, growing and replicating and becoming the TNBC I now have:

So this is how my cancer is, and is not, the same as before.  I have a new cancer because it's different than what I had before.  But it's quite likely that this grew out of some left-over Cancer Cockroaches.  We'll never know for certain, we can only surmise.  But in a mouth-watering way, it all makes sense.  And so we embrace this new information that helps us understand the "how", if not the "why", of this second Dance.  

If only I could rid myself of this cancer as easily (and tastily) as I did those yummy visual representations...

Held in Love

Treatment #2 of 6 is in process.  They put us in one of the few truly private infusion suites, which has all the hallmarks of a isolation area with an actual sliding, closing door wall and no real window view.  The machine buzzes in rhythym, currently delivering a drip of saline and a dose of Emend and Aloxi, my long-acting antiemetics.  Shortly, my hands will be gloved in Oven Mitts, and my toes wearing their Ice, Ice Baby Booties.  This time I brought lemon popsicles to suck on, as the mouth sores wreaked painful havoc for several days.

As a lifelong crafter, I always seem to have something happening with my hands, so these oven mitts of torture really piss me off.  I tend to cycle through the crafts I love, moving from knitting to sewing to stained glass to cross-stitch to paper crafting to painting, and whatever other project peaks my Pinterest (and let's not forget glass-glittering and wedding-crafting!!)  Over the years a few of those much-loved crafts and art projects have fallen by the wayside, no longer holding my interest.  In the last several years I've found my heart led to the fiber arts - knitting, crocheting, quilting, clothing design, even exploring doll-making.

During my first go-around I started a new project the week after my diagnosis.  My family is spread far and wide, from Alaska to New York to Wisconsin to Ohio to Adrian to Ypsilanti to Jackson.  I missed having them close by; I so missed having them with me.  They hold me in their arms both physically and emotionally throughout this time, and I wanted to keep that feeling of safety and security with me during treatment.  So I asked them to draw their hands on a plain piece of paper, in whatever shape they desired, and send them back to me.  After sifting through dozens of pages of heart-shaped hands and holding hands and thumbs'-up hands (surprisingly, no middle-finger hands), I settled on my design.  I spent two days combing fabric stores to find the fabric that, to me, expressed and represented their personality in my heart and soul.

Through all this thought and positive energy and simple love, we created my chemo quilt:

"Held In Love"

Each hand releases a heart - sharing their love not just with me, but also with each other, all others, everyone in this ring of support.

The red hand is my father.  His favorite vehicles were all red - the Pinto wagon, the Fiero, the Mustang, his truck.  My sister Amy is the purple tie-dye.  She's a self-described gypsy, and definitely a free spirit.  My mother's favorite color is blue, and this felt so much like her, with so many shades and layers.  My son Michael loves his maize-and-blue (GO BLUE!) - but he, too, holds many hearts in his hand.  My daughter Stephanie is fun-loving, spirited and rainbow-colored - so much like her hair (and her soul).  My sister Mary's hand holds paw-prints, for the puppies she loves so very much.

Next to Michael are the handprints of his beautiful children - and my beautiful grandchildren, Nevaeh and Luke.

Ken's daughter, Miriam, is strong yet peaceful, and makes me think of nature and the outdoors, as does her husband Aaron who is quiet but so very funny (top and bottom on the left).  Ruth is vibrant and colorful and wise ; her husband Sean is kind and loving and full of energy (middle, top and bottom).  Dan is bold and fun and lively; his wife Lindsay is royal and authentic, and truly joyful (right, top and bottom).

Last but not least is my sweetie, my best friend, my partner, my soul mate, my love - my husband Ken.  He is wise and strong and full of life, always reaching for me and sending me love.

You can find me in the center of the quilt, evolving and growing from cancer (pink) into bright and new hues of life - yellows and oranges.

The quilt is double-sided; no matter which side is facing me, I am held by the hands of my family  The binding is made up of the fabric used for their hands, holding it all together.

Since this quilt was first created we've had addtions to the core of our family, and I expect this quilt will grow and evolve to include new sons, daughters, nephews and grandchildren.

So today I sit, again wrapped in the love that my family sends me now, and always.  Their hearts are always with me, and I feel surrounded by their support, love, and beautiful souls.  

There is so much peace being snuggled under this blanket, held in love by the very reasons I am determined to beat this cancer once and for all.

A (Shiny) New Day

All week the hair has been leaving, falling like dead pine needles from a months' old Christmas tree. The first night I take a long, hot shower, running my hand back and forth over my head to loosen and remove as many tiny hairs as possible.  The shower is ringed with little black specks, and as I towel-dry I see a cloud of small hairs fly to the floor.  By the second night my scalp has become tender, the dying hair poking me in a thousand places, desperate to be free of my scalp.  At this moment, I realize it's time to pull out the Big Guns:

The sticky-tape lint roller.

Flashback - last time I was at this point, my desperation lead me to try Scotch tape, then packing tape, then finally - duct tape.  The latter took not only my hair, but small pieces of my scalp.  I was left with a red and tender head, as well as a tongue-lashing from my dear friend and fellow survivor Jennifer, who reminded me of the magical benefits of the lint roller.

I roll the sticky roller over my head from front to back - and come away with a tapeful of small hairs.  No pain, no stray pieces of scalp - just flecks of hair everywhere.  A few more passes, and the tape is completely covered in hair.  Another piece of tape, then another...a dozen more and I can clearly see my scalp in several places.  I decide to give my poor head a rest for the night, slap on my sleeping cap and call it good.

The next night I tackle the lint-rollering with renewed gusto.  My intention is not to leave the bathroom until all the hair has been removed from my head.

Half an hour and 15 sheets of tape later, and I now resemble a dog with a bad case of mange:

 

Once again I give up, defeated by my own fleeing hair.  There is far more than I realized, and this stupid-sticky process is clearly going to take more time and energy than I have at this moment.

I slap a hat on my head for work on Friday, tugging it front and back, front and back, pulling down the sides, terrified someone will see the bald patches peeking out.  I check myself frequently in the mirror in the bathroom, not wanting to reveal the secret.  Probably no one cares, but it's hard not to feel obvious in the very act of trying not to be obvious.  

 In the evening I run through another half-dozen sticky tapes before I give up and realize the time has come for more drastic action.  Being the low-maintenance (read: lazy) kind of middle-aged woman that I am, my only razor blade hasn't seen action in a couple of weeks, and I'm pretty sure it's about as good as my piano-playing skills:  Once crisp and sharp with nary a miss or nick, but rusty as an old nail and just about as useful.  A trip to the store is in order before this hair-removal can continue.

(Just briefly, I consider the cold-wax strips I keep under the bathroom sink for "emergencies", but slowly replace them and take a giant step back as I am reminded of The Duct Tape Debacle.  Never again...)

On Saturday, sharp 5-blade razor in hand, I finally begin the process of shaving.  There is still much to be removed, and I slowly run the blade front-to-back, then side-to-side, cutting down the little pine needles in their tracks.  Up my neck and down behind my ears; the little swirl at the top of my head where I have to work in all four directions to catch every little stubble.  I stop with more to go, suddenly and utterly exhausted.  On Sunday morning with renewed determination I change out the blade and complete the task at hand, er, head. 

Finally.  Complete.

I am beautifully bald.  My head is cold and shiny, my scalp white with some Dalmation-black patches of shaved follicles left behind. My hats are now a little loose and slidey, but they cover enough without being too obvious.  

I miss my hair, but I'm glad it's finally gone.  The anticipation of waiting for the hairfall and encouraging its leaving, is almost worse than it being gone.

Last Tuesday, after buzzing my hair down, my husband Ken posted this on Facebook.  I wanted to share it here because his voice is rarely heard in this story, and yet he is so much a part of this journey as we walk this cancer path together.

"The Hair in My Hand"

This evening, for the second time in 4 years, I buzzed my Nancy's hair.  It was time.  The results of just one chemo treatment was taking its toll on fast growing cells -- like those in hair and, I desperately pray, every last one of those sneaky little shits (cancer cells).

The hair that remains is consigned to a quick departure. We may buzz it shorter in a few more days. But very soon it will all be gone; every last tiny follicle.

My Nancy looks amazingly beautiful with her "naked top", and I don't say that just to be "comforting" or supportive to this woman I love.  Her long dangling earrings, the cool hats she recently bought, the scarves she wears gypsie-style, and those magical eyes that seem bigger than ever, all add to her... well, let me just put it bluntly... hotness. (Yeah, baby!)

I would rather this non-hair style that's returning was a thing of choice, a seasonal whimsy, and not the result of medication (targeted poison). Yet I know it's being infused to give an ass whooping street fight kind of beat down to the F~€¥\@# cancer. 

While I truly appreciate it when I hear people say they're sorry that this villain has returned, I get a rush of strength when I hear "this totally sucks", "kick it's ass", or other things about it that might peel the paint off a barn.

My heartfelt best wishes to those with a loved one going through something similar. Now let's all get out there and kick its ass with no mercy!

Rapunzel, Rapunzel...

...shave off that hair...

 

Over the weekend I noticed the hairfall had begun.  At first it was just a few extra hairs on my pillow, then I watched a couple errant strands float off my head and onto my dinner plate.  That's how it happens - slowly at first, you almost don't notice it (unless, of course, you're expecting and even waiting for it).  Yesterday as I towel-dried my hair I watched a multitude of brightly-colored strands fall to the floor.  This morning as I stretched and yawned awake, I ran my hand through my hair - and came away with half a handful.

Tonight, Ken buzzed me down to a quarter inch.  The first lesson I learned last time was not to shave too quickly.  As the hair breaks away from the root it sometimes wants to stay stuck in your scalp like a thousand little needles.  If I shave it all off now, there's nothing to grab on to with the duct tape (okay, I admit, I was desperate last time and tried that, but quickly learned Lesson Number Two - duct tape will take your skin off too.  This time, I promise - lint roller and nothing else).

I cried.  I didn't think I would.  Been there, done that, got the ugly t-shirt - you'd think I'd be used to this by now.  Even though I was prepared, I still wasn't.  For some reason it was harder this time around.  So I let myself cry for a few minutes while Ken gently cut my quickly-thinning hair.  At one point I took the clippers from him and ran them around my ears; feeling the hum against my scalp, buzzing like a bee in my ear, and taking back that moment of control made it all okay again.

I don't mind being bald.  But I do mind becoming bald.

Selective Memory and Texas Hailstorms

President Johnson once said, "I feel like a hitchhiker caught in a hailstorm on a Texas highway.  I can't run.  I can't hide.  And I can't make it stop."

Had I fully remembered the experiences of four years ago, it's quite possible I would have paused long and hard before agreeing to hitch a ride on this highway again.  At least I would have acknowledged and honored how sucky this next year was going to be, before jumping in with both feet and shouting, "Let's get this show on the road!!"

And now, we can no longer run or hide - we just have put one foot in front of the other.

Last Tuesday was the first of six scheduled rounds of chemotherapy.  Treatment itself went off without a hitch, yet the whole experience was incredibly surreal.  "I've been here before," I kept thinking as I was weighed and measured, finger-poked and port-accessed, as Ken and I walk to Chair 8 in the infusion center.  I wondered exactly how I'd gotten here again; I look around and wondered how any of us get here.  It's a challenge to jump off the carousel of circular thinking, and sometimes I just shut down because I really don't want to think about it anymore.  Tired of dealing with it.  So frickin's over the whole thing already - and dammit, We've Only Just Begun.

I snuggle into the warm blankets in my chair and repeat my full name, birthdate; full name, birthdate; and am hooked up to the winking, blinking machines, infused with antiemetics and saline, and enough steroids to beat Rhonda Rousey with both hands and a leg tied behind my back, and then,

There's the crystal clear bag of the first of two drugs, Taxotere.

The standard chemotherapy regimen for TN is Adriamycin and Cytoxan together, followed by Taxol.  Adriamycin (or the "Red Devil" as it is often referred to, is administered via a cartoonishly large syringe of what looks like Cherry KoolAid, only far less tasty and more dangerous) has a maximum lifetime limit due to cardiotoxcity, and I reached that limit four years ago.

And so instead, the Weapons of Choice this time around are Cytoxan and Taxotere.  Cytoxan will cause my hair to fall out (which gives me a reason to purchase adorable little newsboy caps.  Positive reframing, yo), and for about 10 days everything will taste like I've got a mouthful of metal:  coffee, water, apples, salad, chocolate, - everything tastes like copper dipped in nickle, wrapped in brass (or so I suppose).  Coupled with the mouth sores, eating is (for a change) my least-favorite activity.

Taxotere is a kissing cousin of Taxol, derived from the Pacific yew tree. Often Taxol is given on its own (or in conjunction with Herceptin for Her2+ BC), on a weekly basis for 12 weeks.  One of the SEs of the taxanes is potential for permanency (and not in the way my SW friends are thinking).  Potential for permanency, as in - hair loss and neuropathy.  Studies have shown that exposure to deep cold can significantly lessen or even eliminate these two potentially permanent side effects.  The FDA recently approved the use of "cold caps" to greatly reduce loss of hair during chemotherapy; "freezy" gloves and booties are also available to reduce incidence of neuropathy.  These items use hypothermia to constrict blood vessels, impeding chemotherapy from reaching those areas.  While the whole point of chemo is to mop up any stray cancer cells that may be moving through the body, it is believed that icing these areas is safe in certain circumstances.

The drawbacks tend to be the cost per treatment (around $100 for the gloves or the booties, and about $400-$500 for the cold caps) - and the pain.  My clinic offers the gloves as part of my treatment, but not the booties.  And so we begin the Taxotere portion of our program by donning the Oven Mitts of Ice:

Time to make the donuts!

Because I'm worried about my feet, Ken and I rig up our own Ice, Ice, Baby Booties by placing refreezable ice packets in the bottom of oversized men's hunting socks, then sliding them over my own thin running socks (just to keep the ice from burning my feet).  After about 3 minutes it feels like I'm standing knee-deep in a snowbank wearing wet mittens and boots during an arctic blast, and I still have the driveway and sidewalk to shovel.  The pins and needles painfully give way to numbness, and I squirm  and whine a little in an effort to keep myself from ripping these frozen items from my hands and feet.

Once Taxotere is complete the gloves and booties are removed.  My fingertips are pink; I rub them on the warmed blanket on my lap and start to feel the burn as they warm up.  Dammit that hurts......but remember, breathe, it's a small price to pay in the end...

We move on to Cytoxan, another beautiful crystal-clear bag hanging next to the rest.  They all look so innocuous and un-dangerous.  "Just the name Cytoxan sounds like poison," says my friend K.  Because it doesn't hurt or look ugly, it can be hard to remember that I'm spending four hours having toxins pumped into my body.

And just like that - we're all done!!  One down, five more poisonous sessions to go.

The nurse pops the needle out of my port, and says, "Are you ready to meet The Button?"

I grin like a schoolgirl; I am both nervous and excited to meet The Button.  Another nurse pops in to our little area (now wrapped closed in curtains as I'm about to expose parts of my body - directly facing the open window across from me...) and asks if she can watch.  All three of us are giggly, and I can sense that Ken is fascinated that I'm about to become a science experiment in my own mind.

About the size of a box of dental floss, The Button contains an injectible dose of Neulsta, and will automatically administer the medication 27 hours after the end of chemo.  Four years ago I had to return to the doctor's office the day following chemo for the injection, which meant more time off work and additional inconvenience. Now, The Button does this automatically!

The nurse "activates" the button by injecting the Neulasta into it.  Once complete the button blinks and beeps.  She peels the paper off the sticky tape surrounding the button and sticks it to my abdomen, all the while the beeps and blinks are getting faster.  "Wait for it," she says.  We're all gleefully peering at this little Matrix-like thing on my belly, waiting for it to animate and crawl over my stomach and burrow into my belly button or something.  Instead, the beeps and blinks become one long sound and color, and - *poke* - the needle deploys into my stomach.

I jump a little and cry, "Eeeek!" - more out of surprise than pain (honestly, it hurts less than those stupid finger pokes).  We all smile and laugh and marvel at the wonders of technology.

That was really cool.

27 hours later, while leading a teleconference on speaker phone I hear ever-increasing beeps emanating from.....where?  I've forgotten about The Button, and I can hear someone on the other end of the line say, "Who's beeping?"  I check my phone, my computer, and give up, thinking it must be one of the grandkids' toys or a smoke detector or something...  The beeps come faster, louder, and suddenly it's one long beeeeeep....and I remember!  I lift my shirt (teleconference, remember?) and see that the button is doing its job, injecting the medication.  Over the next 45 minutes it blinks and beeps and when the line reads EMPTY the light turns red, and the dose is complete.  I peel back the tape, gently grab the button between my fingers and - *wincing* as I prepare to PULL THE NEEDLE FROM MY BELLY - *bloop*.  It's a flexible plastic needle, not a rigid metal one, and so it simply slips from my skin like a small sliver.  

The first day of chemo has historically been the easiest for me, and this time appears no different.  Steroids combat the inflammation that causes pain, and the chemicals haven't had a chance to really get in there and take hold just yet.  I work for a few hours in the afternoon after chemo, but fall asleep for a long nap late in the afternoon.  I realize I'm emotionally exhausted and once it's all over with, I kind of just fall apart.  I relish this nap time as I've been on steroids for two days already, and sleep has already been an elusive bitch.

I wake on Wednesday to another snowstorm, and take advantage of my director's offer to work remotely when necessary.  The steroid buzz makes driving a bit of a challenge, and I can feel the slide into side effects starting (so much for coffee this morning), but I'm able to power through the day fully functional.  Today will be the last day of steroids, however, and I know the jump off that cliff will be hard and probably painful.  

On Thursday I return to the office; about noon I start to feel the hard-core side effects kicking in.  Turns out that Taxotere gives me the same SEs as Taxol did before.  It feels like having a really bad case of the flu:  body aches, sensitivity to light and sound, sore throat, bone pain - all that fun.  In addition to the Taxotere are the SEs from the Neulasta, which include bone pain, muscle aches, and flu-like symptoms.  Neulasta helps grow white-blood cells in your bone marrow to ward off infection, which creates the feeling of your bones kind of growing and shifting.  By 3:00 on Thursday my entire skull is in the grip of a monster hand, pushing and squishing and squeezing.

Time to go home.

Friday I wake to...well, I'm still awake because I never really slept for longer than a few moments.  The pain has travelled to my long and big bones, including forearms, femur and hips.  I can't turn my neck without wincing.  I lay on one side...then flip to the other...then curl up in a fetal position.  I'm waking Ken every other minute with my restlessness, but it's hard to find a place to rest that will allow me to sleep.  I've chewed my maximum dosage of NSAIDs, and will just have to manage.  This is the SE I was most afraid of - and yet, probably most prepared for.  At least, as much as I could be, given that I had truly forgotten just how intense and awful these moments were going to be.

And like a Texas hailstorm, I can't make it stop.  

Friday is the worst, by far.  I work from home again, but between the pain and the steroid drop I am inefficient at best.  The sun is shining and I make my way out for errands and lunch, but return home feeling broken and exhausted.  I finally break down and take only one pain pill left over from my surgery.  I've avoided this because - well, because another SE is related to "regularity", and let's just say that I'm already backed up farther than I-94 during orange barrel season.  I hesitate to take a pain pill that will contribute to that traffic jam.  By now, my legs are bending backwards and my hips are exploding.  I walk into the kitchen and my right knee gives out gently.  My left ankle swivels with every step and I feel like a marionette with most of her strings cut and dangling.

I sleep; I cry; I whine at the Cancer as if it was standing in front of me ready to take a beating.  "You bitch," I say, crying and railing. "You can't do this to me again.  I can't do this again.  I can't.  I just can't."  And it's true, but not true, because I know I can.  I'm still angry that I have to.  And yet I'm reminded of those who are battling this a third time, a fourth time, will battle for the rest of their lives because this IS their life.  And I realize I'm still blessed to be able to fight.

By Saturday I feel the sun parting the clouds.  I venture out to spend the afternoon at the vineyard with dear friends who are also survivors; we celebrate the snow and wine and good company and being alive, and it is joyous.

Today is another day, and it is getting better.  Ken and I enjoy waffles and coffee (and it only tastes like $0.16 of pennies this time) and some quiet time just *being*.  I'm looking forward to a return to normalcy over the next few days.

I'll collect hailstones again in a couple of weeks, but until then - I'm just walking along the highway, delighting in the sunshine.

Monday, Monday (and a little Wednesday, too)

The blessings of life can be found in the mundane.  There's normalcy in dusting and vaccuming and folding laundry, and for those moments I am grateful.  This week has been full of visits and planning as we move forward to the next steps in this experience, and it's those simple moments in between all the hustle and bustle that I really gravitate towards.  I like feeling "normal" and as though the devil isn't poised to knock on my door, demanding my undivided attention.

I'd rather scrub my toilets with a toothbrush than answer that door.  

Since that isn't an option, Ken and I ventured to University of Michigan's Comprehensive Cancer Center on Monday for an all-day multi-disciplinary team visit.  It was here we would be getting a second opinion on the pathology of the previous Monday's surgery, as well as a review of current scans, and possibly more testing.   We would also be meeting with a plastic surgeon to discuss surgery and reconstruction options.  We were excited for this visit as a way to enhance, not replace, our current treatment plan and team.  Information is the only weapon I can bring to the field in this battle, and I am determined to amass an arsenal worthy of a Matrix redux.   I was also not-so-secretly hoping to find the answer to every last, little question I have been carrying around for weeks.

What's that old saying?  Be careful what you wish for.

We arrive at our appointed time and after a trees'-worth of paperwork, we meet first with Angie, the nurse who will be our tour guide for the day, and then with Lindsey, the oncologist (we go by first names here, which is both unnerving and strangely comforting).  Lindsey reviews my medical history, does a quick physical exam, gives us an overview of our days' agenda, and then sends me off for more scans.

In my "put it on with the opening in the front" pink hospital gown.

I'm escorted  down a very public and trafficked "back hall" to radiology - carrying my purse and notes and parka and clothes while also trying to hold closed the front of the one-size-fits-all breast-cancer-pink gown.  Enough people have seen my breasts at this point that I don't care who else sees them, I just don't want to scare anyone.  Seriously, sometimes I feel an almost false sense of modesty about the girls, and have to remind myself that no, Nancy, not everyone has seen them, and no, not everyone wants to see them.  So please put them away.

I take a seat in the waiting room and look around at the sea of pink gowns, some falling open gently, others being held closed in a death-like grip, still others swathed in warm white blankets from the little heating oven in the corner.  This is a breast clinic day, so many of these women are here because they've been recently diagnosed and are seeking first or second (or maybe even third) opinions.  Others, like the pretty, boisterous, middle-aged chatty women sitting across from me, are here for follow-up scans for benign findings.  I learn later that those who are most quiet will be with me in the afternoon for the cancer clinic.

Chatty woman talks about her numerous needle biopsies and discordant results and visits to various specialists, waiting two years for a diagnosis.  She works for cancer researchers, she shares, and they encouraged her to seek out UofM.  After surgery revealed a benign growth, she felt relief and then anger that it took so long to receive this diagnosis; that she wasted so much time and energy worrying about having cancer.  And then she says,

"I know that breast cancer is the most easily curable cancer, so I don't understand why they didn't just try to....."

And I think I experience spontaneous deafness, because I don't hear anything else she says.  After a moment I realize she's staring at me, waiting for a response.

"But we don't have a cure for breast cancer," I say.  "It's treatable, but not easily curable..."

"Well, yeah, I mean, but we can cure it with surgery and chemotherapy, and heck I'd love a new pair of boobs..."

Dammit, there goes my hearing again.  Which is fine because the nurse comes to get her for her scan, and she's gone.

I sit back in my chair and try to absorb what has just happened when I decide to stop, just stop, and take a breath.  I realize she is misinformed and doesn't know what she doesn't know.  In fact, she know exactly what I had known prior to my own diagnosis, which is what many of us know until...until we know something different.  I also recognize that she's scared - and rightly so.  Her experience shapes her world view, just as my experiences have shaped mine.  And so I wish her well and send positive energy for negative results, and chose instead to focus on my own toothbrush-and-toilet issues.

Just as I look around the waiting room and see most of my former companions are now gone, I'm called back for my mammogram.  After a lengthy retelling of my medical history the mammogram tech says, "You're having a mastectomy, right?"  I explain that yes, later in the summer I'll be having surgery, and she pauses, bites her lip, and stares at me.  "If you're having a mastectomy, you don't need a mammogram" she says.  "Or the axillary lymph node ultrasound.  So you're done here."

All that waiting-room fun and no boob-squish reward?   I might need to buy a lottery ticket on the way home.

Ken and I are released early for lunch, so we walk to campus and I point out different buildings and share childhood memories (I shout "Go Blue!" a few times along the way, just because I can.  Sorry-not-sorry!)   We stop for coffee at Fourbucks, sitting across from each other at the coffee bar.  The couple sitting next to us is speaking Japanese, and it's melodic and beautiful and I eavesdrop just to hear the sounds of their voices (miraculously, my hearing is fully restored).  A few minutes later they leave, revealing that the couple sitting on the other side of them is having a joyous and intense conversation in French.  Their hands and bodies move in rhythym to their words, and I am wistfully reminded how much I miss living in Ann Arbor.

We have lunch with my sister Amy, then make our way back for our afternoon meeting with the team members.  Our first meeting is with another oncologist, who has just come from the tumor board meeting.  Not only have they reviewed all of my records, but they've prepared a new pathology report based on the 23 slides provided by my current health care provider.  This pathologist is both an MD and a PhD, was a chief resident at Mayo Clinic, and is an associate professor at UofM.  This report indicates that the two "lymph nodes" that had been removed were actually two sets of lymph nodes, so 4 nodes in total were removed.  Great news - there is no evidence of cancer in any of these nodes!!  Ken and I are both visible relieved and comforted by this news.  The size of the cancer is confirmed to be 8 mm - slightly smaller than a centimeter, but probably made smaller by the four core biopsies that showed a millimeter each of cancer.  This, too, is good news.

We also learn there was an area of high-grade DCIS with comedo necrosis.  DCIS, or Ductal Carcinoma In Situ, is Stage 0 non-invasive breast cancer.  DCIS itself is always non-invasive and does not have the ability as DCIS to metastsize to the lymph nodes or other distant organs.  In some cases, however, DCIS can become invasive cancer (IDC), but it's not possible to predict in which instances this will occur.  DCIS is graded from 1 (low grade) to 3 (high grade) similarly to invasive cancer.  The lower the grade, the more closely the cancer cells resemble normal breast cells.  DCIS has historically been treated with surgery - either wide margin lumpectomy, or mastectomy - but more recently there is a shift in the medical community towards an "active surveillance" approach for low-grade DCIS.  Grade 3 DCIS is the most aggressive and fast-growing.  Because of this it literally starves itself and starts dying off, leaving necrosis or dead cells at the center.

DCIS often accompanies an IDC diagnosis so we weren't necessarily surprised, but we also didn't expect it to be quite so aggressive (just another piece of information in our ever-growing expandable folder).

Lastly, we learn that one of the surgical margins is exceptionally close - less than 0.5 mm - and therefore considered "dirty".  Unfortunately, we now cannot consider our surgery a "success"; it is not a true lumpectomy because of that pesky margin.  I know the next suggestion is going to be to move directly to mastectomy, and as if she reads my mind, the oncologist brings up this very topic.

In fact, she looks at my electronic records and parrots the exact words I have used with my own oncologist in our discussions on delaying surgery until after chemo is completed.

I'm pretty certain she skipped over the words "noncompliant" a few times, though.

The National Comprehensive Cancer Network - or NCCN - guidelines recommend surgery (lumpectomy or mastectomy) first, followed by chemotherapy (called "adjuvant chemo").  In cases where a tumor is very large, or Her2+ and Perjeta would be beneficial, chemo may be adminstered prior to surgery (called "neoadjuvant chemo").  I don't fit the standard for neoadjuvant chemo and so the expectation is that I will move directly to mastectomy.

But being contradictory is in my nature, and given my life at this moment, I'm not prepared to be out of commission at this time for roughly eight weeks.  I also don't want to split up this one major surgery into two smaller but still major surgeries, necessitating two seperate leaves of absence and two recovery times and...blah, blah.  I discuss my reasoning with the oncologist who doesn't really bat an eye, but I know this is not the preferred progression of treatment.  It's not technically outside the NCCN guidelines (as my oncologist and I have discussed), but it's definitely unconventional.

Without having to ask, the oncologist answers the one question that has been rolling around in my head for days now - is this a new primary cancer, or a recurrence of my first cancer?  I know what my oncologist has already declared; I know what the peer-reviewed literature says.  But I want to hear the thoughts of this incredibly talented and gifted multi-disciplinary team.

The answer is both yes, and no.  And because it's interesting and complex and I wanted to eat Jelly Bellies, I'll explain this concept in my next blog post.

Our day is winding down, and Ken and I are a little tired - him of being my attractive-yet-overwhelmed scribe, and me feeling the need to defend my treatment decisions.  Our last appointment is with the plastic surgeon who brings beautiful closure to the end of our long day.  Once again, I'm undressing and donning a hospital gown with the opening in the front.  He pokes, prods, lifts and separates; he asks me if I'd like to "go larger" and raises a solitary eyebrow when I say no.  He explains in great detail the types of reconstruction I am willing to consider and proclaims me a suitable candidate (let's just say I have enough extra fat stored in various areas that he can craft a couple of extra boobs.  That's a story for another time...)

It's now almost 6:00, and we just want to go home.  And so we do.  We talk, and fall silent.  We're already tired and the hard work hasn't even started yet...

On Wednesday we meet with our oncologist and he pronounces my surgical scars healing well enough that chemo should commence soon.  Like next Tuesday.  And so there it is - our first chemotherapy appointment is less than a week away, and there's the moment of realization deep in my heart - this is real, here we go again, whatthefuck?  But we now have more information to fuel our strength.  So when the knock on the door comes, we're now more prepared to answer it.  And beat the shit out of whatever's on the other side with a really dirty toilet bowl toothbrush.

What's With All the Negativity?!?

Monday's surgery is behind us, and the girls are being a little cranky.  Lucy's ego is a little inflated, thinking she's all that and a bag of chips.  Actually, Lucy's swollen after all the poking and prodding and tissue removal, and now sporting a seroma (a collection of fluid) in the cavity left after the lumpectomy.  There's also a seroma under my arm where the lymph nodes were removed, so she's still tender and swollen.  On a funny note, when I scratch the skin over the seroma it sounds hollow and almost drum-like.  The fluid will eventually be reabsorbed by my body, so no In-A-Gadda-Da-Vida drum solos anytime soon.

Ethel's not particularly happy to share her space (again) with Portia, but they're nestled all together in their little corner of the world.  Portia's still a little tender, too - moreso than I remember from before - but she'll settle down eventually.

"Is she talking about us?"                   "No way, we're breast friends!"

Our surgeon called on Friday with the new pathology report.  There was good information to share, primarily that the size of the cancer itself was smaller than we originally expected.  Dr. F removed 2.5 cms of tissue from the site; within that area was about 1 cm of cancer.  The rest was scar tissue from previous surgery and radiation therapy.  We got clean margins, so instead of doing an excisional biopsy (where some cancer might have been left behind in "dirty" margins), we achieved a true lumpectomy.  

Jabba has left the boobie...er, building.

Additionally, lymph nodes are clear.  There were cancer cells in the lymph nodes, but not enough for them to be considered "node positive" or to have "micromets".  This is good - very good.  Finding a few cancer cells, or Isolated Tumor Cells (ITCs), means my lypmh nodes were doing what they're supposed to do - catching the bad guys and throwing them in Lymph Node jail to keep them from travelling to somewhere else in my body.  This happened our first time around as well, and so we're pleased with this additional piece of good news.

On the other hand, we now know the Her2 status of the cancer, and it's negative.  My estrogen (ER) and progesterone (PR) receptors were also re-tested, and they, too, are negative.  This means my cancer is triple negative, or TN.  This is not necessarily good news, but it's good news to have so we know what we're dealing with.  

The challenge with TN is there are no targeted treatments to prevent metastatic recurrence.  ER+ breast cancer (as I had the first time) has powerful targeted treatments in Tamoxifen and aromatase inhibitors like Aromasin and Arimidex.  In fact, Tamoxifen is considered almost as important (if not perhaps just as important) in treating ER+ BC as chemo and radiation, and can be one of the first treatments prescribed for those whose BC metastasizes.  Typically, Tamoxifen and AIs are taken for five years post-treatment, although there are new studies that support the use of these treatments for 10 years.  

Her2+ BC also has targeted therapy in the form of Herceptin (an infusion typically given with chemo initially, then every three weeks for a full year).  There is also Perjeta, another Her2 inhibitor therapy given neoadjuvantly (prior to lumpectomy or mastectomy).  Both of these can have serious side effects including heart problems, but they are remarkable effective at helping decrease the incidence of metastatic recurrence.

TN, on the other hand, has none of these targeted treatments.  Chemotherapy is a given (except in cases of very, very small tumors), and the preferred course is Adriamycin, Cytoxan and Taxol - the chemo I had during my first dance with this devil.  Unfortunately, Adriamycin has a lifetime maximum due to the chance of heart failure, and I've already had my lifetime max.  So - we look to another chemotherapy regimen, which will be Cytoxan and Taxotere.  Cytoxan will cause my hair to fall out, and Taxotere can case permanent neuropathy and has the potential for permanent hair loss.

Good thing I'm a hot bald chick.

But these treatments are what I have available, and as much as they suck, they also rock.  

In addition to learning of my TN status, our surgeon also shared that the cancer is grade 3, which is the highest grade for breast cancer.  This means the cells are poorly differentiated (they look very different than normal cells) and are aggressive (the cells are dividing and growing rapidly).  While this isn't necessarily good, there is a silver lining:  chemo loves fast-growing cancer, and gobbles it up like a toddler with a 3-lb. tub of gummy worms.  Hopefully, this means that any rogue cells floating around in my body will be attacked unmercilessly by the upcoming chemo treatments.

TN has an early metastatic recurrence period - typically within the first three to five years - and it's a higher incidence of recurrence than for ER+ BC.  The positive side of this is that, unlike ER+ BC, I won't be waiting around 20 years for the other shoe to drop.  

Well, except that I will, because on top of now watching and waiting for TN recurrence, I'm still watching and waiting for my first ER+ recurrence.

I'm not gonna lie.  I'm kinda scared.  Triple negative doesn't have positive outcomes (no pun intended...oh fuckit, yeah, I meant it.  Gotta take my humor where I can find it).  Of all the varieties of BC, TN pretty much sucks the ocean floor of outcomes.  Even with a smaller sized tumor, the chance for recurrence is greater than what I worried about before.  No one's patting me on the back and saying, "Hey, small size, early stage, you'll be cured here shortly."  

Tomorrow (another Epic Monday), Ken and I meet with the University of Michigan Breast Cancer Center for a second opinion.  They're already reviewing my first pathology slides from four years ago, as well as my current slides.  They're re-reading all of my scans and reports.  I'll have more scans and tests when I first arrive, after which we'll meet with an interdisciplinary team to discuss their findings and their recommendations for treatment.  We'll be able to ask the questions that seemingly have no answers, like How did this happen and What does this mean long term and How much do I really need to worry?  Maybe they'll have answers (I'm keeping my fingers crossed) and maybe they won't.

That's the beauty of breast cancer - it's pretty much a fucking crapshoot.

I still find positivity in all of this negativity, however.  Finding joy in those little moments in between the mundane, like a surprise visit with Michael and Vaeh, and sweet hugs from Miles and Tori.  Feeling wrapped in love by the beautiful, artistic socks from Stephanie and Josh, and dropping little texts with "I love you's" and floating hearts.  Watching Mary wield the reciprocating saw like the basement-killing ninja I know her to be. Ken and I hiking MacCready Reserve today, climbing over the ancient pine trees fallen by the recent wind storm, marvelling at the sap-art created on the forest floor.  

With this new diagnostic news I am reminded about what's truly important in my life.  Everything else, we just take one day at a time.

(thanks, sweetie!)