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!)

Eviction Notice - You Got Served!

Finally - surgery.  Lumpectomy, sentinal node biopsy, and port placement.  Having been through each of these procedures before (albeit at different times), I thought, Let's be practical - I've got a holiday off work, let's do this all at once and get it over with.  I'm literally "shivering with antici......pation", wanting so desperately to have answers to the myriad of questions that continue to grow each day.  So we schedule all three procedures for yesterday and, well.......I'm glad it's over with, but what was I thinking?  Thank god for Vernors and pharaceutical intervention.

I received word late last Friday that my insurance had approved genetic testing, so the first stop of our day (dubbed "The Tour of a Thousand Pokey Things")  was the oncology center for the blood draw.  Instead of utilizing the lab they took us back to the infusion center, "Chair 11" (which is designated by a large, glittery Vegas-like arrow hanging from the ceiling).  I remember this chair from previous visits as the location where Neulasta shots are delivered.  I hadn't been back to the infusion center since my last chemo almost four years ago, and was quickly reminded of The Smell - medicinal, salty, Heparin-y, icky, that smell you can taste in the back of your throat, the smell you still smell in your dreams and nightmares.  It's a scent unique to the infusion center, and for some reason I felt tiny tears spring to my eyes, but only for a moment.  Got no time fo' dat, not on a busy day like this.

I was in the infusion center, it seems, because the nurse thought I already had my port and planned to draw the necessary blood from that.  Alas I did not, but she quickly poked me with a butterfly and we were off to the hospital to check in.

(Damn the "nothing to eat or drink after midnight" rule; I desperately needed some gum or rum, or even a good run, to get that tasty smell out of the back of my throat...)

The outpatient surgery unit now requires the patient to use warm, sticky wipes to clean and prep the entire body to reduce infection.  Luckily, I got to give myself the sticky-wipey-sponge bath, but then I stand there naked and wet, freezing and sticky, waiting to dry off just a little bit before putting on my gown.  Which then sticks to me everywhere anyway.  I put it on backwards first - easier to tie in the front, I figure they'll want it open with Lucy more easily accessible.  Except that Ethel kept peeking out, jealous again the Lucy was getting all the attention and hoping someone would take notice of her too.  So I peel the gown off my less-sticky body and put it on properly, having Ken tie me all up the back.  As I slide back onto the hospital bed I notice a little pocket on the right-hand side and, looking down, see Ethel winking up at me.  Damn you, broad - you really don't want a piece of this shit...

And so the action of the day begins.  First stop is the radiology department for an ultrasound-guided wire placement.  The radiologist who performed my biopsy a couple of weeks ago is present to once again stick stuff in Lucy - this time an ultra-thin and super-long wire to pinpoint the exact location of the mass to be removed.  The surgeon asked for this wire placement to help him locate the mass.  Instead of making an incision directly above the mass (which would leave a visible scar near the center of my chest), he was going in at an odd angle from somewhere between the mass and my nipple (which is the area that will be removed during mastectomy, so ultimately no scar will remain).  A few numbing shots and the radiologist inserts a needle into Jabba (this time I watched on the ultrasound screen - which was both creepy and fascinating), then slides the wire into the needle, and into Jabba.  In, also, goes some blue dye to mark the location, and out comes the needle.  I look down to see about 6 inches of wire coming out of my breast.  WTF?  I think the puppy-dog fear in my eyes belied my concerns; the radiologist smiled and said, "Don't worry, we'll wrap it up for you."  And that he did - coiled it around his finger, laid it on my breast, then covered the entire area in a plastic bandage.  

That's handy.

The wire inserted, I am whisked down to mammography, to squish Lucy (with a WIRE inserted into her, no less) in all directions to ensure the wire is where it needs to be.  That fun is followed by a trip to nuclear medicine for the sentinal node injection - except this time, I'm being blessed with two injections.

I've had this injection before, and I know what's coming.  The needle poke itself isn't the hard part - that's the "bee sting" they warn you is coming.  "Now you'll feel a little burning", says the PA, as he injects the radioactive solution into my breast.  Except that it feels like molten lava trickling down the needle and into my breast.  Last time I had this injection I vaguely remember levitating off the table.  This time I burst into tears and cried out loud.  Before I even realized it I was begging the PA stop.  Bless his heart he said he couldn't stop, and I knew that, and I didn't really want HIM to stop, I just wanted the pain to stop.  In 10 seconds the injection was over, but the hot-poker fire of pain remains, and I cry for another minute as I compose myself to prepare for the next injection.  I cry again, I levitate slightly, and it's over and done with.  I apologize profusely, blubbering and embarrassed and angry and feeling so, so stupid.  The nurse - her nametag indicates she's a student, and I felt really bad she had to witness my inability to endure a little pain - pats my hand and says, "No need to apologize, we should be apologizing to you for hurting you!"  The PA is already long gone, no doubt frustrated with my lack of control (I know I am). 

After all this fun we make it back upstairs to pre-op.  In my absence someone's decided to give birth, and my anestheiologist is busy with the c-section.  My surgeon has his hands in someone else, so we wait patiently for our turn.  And then suddenly everyone's on our doorstep, making introductions, shaking hands, explaining procedures.  

I've had a cold for a couple of weeks and I decide at that moment to have a small coughing fit.  One doctor smirks, and says cancelling surgery now would be like cancelling a colonoscopy after all the prep.  She warns me about the possibility of pneumonia as they'll be intubating me, and makes me promise to see a doctor if my cough becomes "productive". (Sister, I've got a WIRE in Lucy and molten lava coursing over to my lymph nodes, so I'm pretty sure that we're going ahead with this surgery, m'kay?)  

Our surgeon lifts up the mammogram films to ensure the wire is placed properly, and says, "I don't see anything."

I pull down the top of my gown (which has never been properly rebuttoned after all this fun) and point to the wire coiled neatly on my breast.

No, he says, I see the wire.  But the tumor isn't on the film.

He shows it to me, and sure enough - there's the wire.  And there's the little clip the radiologist left in my during the previous biopsy.  They're both there, on the film, as though they're hanging in mid-air.  There's nothing on the mammogram to indicate there is any tumor or mass or growth or anything in my breast.

I look at him quizzically, cocking my head to one side, saying, "What the hell?"  He picks up the other film and holds it to the light, and we both squint to scrutinize it (it's my boob, I get to play doctor here).  "There," he says, pointing to a faint haze, just slightly darker that the surrounding breast tissue."  That must be it."  I squint a little harder, and it's there, but barely, not really, just maybe...  I ask if that's what it should look like and he says no.  I tell him we saw it on ultrasound, I know it's there.  He knows it is too, seems more curious than concerned.  I've got joy juice in me by that point so I really don't care.  Hopefully he follows the wire down the rabbit hole and finds Jabba at the other end.  I just kinda want to get this show on the road.

I vaguely remember being whisked to the surgical suite and sliding over to the operating table.  I'm fuzzy by now but I remember thinking the table felt vaguely crucifixion-like, as my arms lay on the arm boards sticking straight out from the table, using "seat belts" to strap my arms and legs to the table.  The mask covers my mouth and nose, I remember one, maybe two breaths...

...and then I'm waking up in post-op, covered in warm blankets with a canula up my nose and that little blue cap falling into my eyes.  The clock across the way says 3:05...blink-blink...now 3:30...the nurse is poking me to wake up, takes the canula off, then puts it back in, takes off my cap, now the clock says "moooooo....", wait, almost 4:00...

I get the pain-scale question, I'm fuzzy but it's a 5, although I want to say a 6 but I feel like I should say 4 but what the fuck let's just say 5, no 6, then the Fentanyl brings it down to a 3...

I get the lecture about staying ahead of the pain, and it's then that I realize my entire chest is covered in puffy gauzy bandages.  From my right shoulder over down to my left side.  Ken comes back and explains that everything went really well. 

Portia is back (I'm reported," I say to my nurse...who crinkles her nose in confusion...really?  Ported again?  Re-ported?  Reported?  Sounded funny in my head...).  

The surgeon was able to find two sentinal nodes and remove them.  No visible signs of cancer but they're off to pathology for closer inspection.  "She won't be happy," the surgeon tells Ken.  The nodes were far apart so there are two incisions, one under my arm, the other farther down.  And he's wrong - I'm ecstatic and would be even with more incisions.  There was a good chance we wouldn't find sentinal nodes due to previous radiation to that area, so I'm feeling grateful and very, very lucky.  Even if one or both of the nodes contain cancer, the chemo I'm about to start should knock out anything left floating around.  This also means I'm very unlikely to need a complete node dissection when I have a mastectomy later this year, which lessens my chance of lymphedema and other complications.

And the wire did its job - Dr. F was able to find the tumor, hiding under a layer of scar tissue, a corner of which had grown down into the cancer and was actually calcifying.  We now know the tumor was 1.5 cm, the size originally estimated.

Jabba has officially left the building.

The clock strikes 5:00, and Ken helps me dress so we can get outta Dodge.  He is with me through all of this, never leaving my side.  He's allowed to watch (again, from the corner) the wire localization; he walks with me through the halls and waits during the mammogram; he stands near me during the injection (and offers his hand for squeezing, although I fear I would break it) and watches the screen when they scan me, 15 minutes later, to ensure the radioactive material is moving through my breast.  He wipes my tears, strokes my head, kisses me gently.  I always say I can do this by myself, but I'm not-so-secretly glad that I have him with me every step of the way.  He holds me close and tells me he wishes it could be him.  And I - I am so glad it's me and not him.  Sometimes, I just don't have words to describe how very blessed I am.

We should have the answers we need later this week, and genetic test results should arrive some time next week.  My oncologist wants me to wait three weeks from surgery to heal, so my hope is to start chemo on March 8th.  Next steps are Chemo School (maybe I'll get lucky and flunk out...) and meeting with plastic surgeons.  Yes - getting back to Livin'.

But for now, yesterday is behind us, and tomorrow is another opportunity to find gratitude in the moment.  

Goodbye, Ned; Hello, Jabba

Those of us from Breastlandia are monitored closely for signs and symptoms of metastatic recurrence for the first two years.  Different kinds of breast cancer, however, have different long-term metastatic recurrence rates.  ER+ Invasive Ductal Carcinoma (or IDC) can recur years later; the first three to five years is critical for triple negative.  Her2+, Invasive Lobular, Luminal A or B subtypes - all have different ranges for metastatic recurrence.  This is why some of us aren't comfortable or just can't bring ourselves to say we're "cured" until, perhaps, we die of something else.  There is a shadow of looming recurrence, waiting for the other shoe to drop, hoping and praying that day never comes.

So once treatment was complete and my scans and bloodwork and exams were normal, my oncologist pronounced I had "No Evidence of Disease."

And so I started dating Ned.

Now, in my mind Ned looks like this, all hot and sexy and warrior-like, brandishing his sword to slay any rouge cancer cells circulating through my body, determined to fight back any chance of recurrence:

"Hey girl..."

I liked dating Ned.  Pretty sure Ken liked me dating Ned, too.  But alas, our relationship has come to an end.  If he had to leave, my hope is that Ned has moved on to another relationship - or, rather, a multitude of relationships - and that they last a lifetime.

And now I'm Hangin' with Jabba.  I was able to get a disc of my original ultrasound, where I caught my first sight of Jabba:

"Hey girl..."

Okay, so not really.  Here's the actual image from the ultrasound, with Jabba outlined for clarity:

See the resemblance?

On Monday, Jabba will be evicted - or, at least most of Jabba will be breaking up with Lucy (the end of another beautiful relationship).

It's been a long week of waiting for this surgery, which should give us the final pieces of my cancer puzzle.  We expect to learn the Her2 status within a few days that will determine the ultimate chemotherapy regimen.  We will also learn the true size of the tumor itself which will help us determine the stage.  The surgeon will attempt a sentinal node biopsy, injecting radioactive tracer prior to surgery to determine the first (or "sentinal") node the tracer travels to.  This node as well as several others will be removed and examine for cancer cells.  Previous radiation may make the node biopsy impossible; if so, we'll tackle that during surgery later this summer.  And lastly, I'll be reunited with Portia, the power port installed in my right chest area to allow for chemotheraphy delivery.

My bone scan on Wednesday revealed nothing exciting (except that I look like a skeleton under all my skin and muscle).  Monday's CT scan confirmed the size of the tumor and didn't reveal any obvious cancer in the lymph nodes under my arm.  Except for Jabba, things look pretty spectacular inside my insides.

Ned never shoulda left me.  I've got proof I'm just as beautiful on the inside as I am on the outside.

Shut up, Neitzsche

Every day I get a BrainyQuote delivered to my phone at 8:00 am.  It's a nice way to start my day, with words of inspiration from Ghandi, Dr. Seuss, or Chelsea Handler.  At the appointed time my phone *dinged* and there appeared the quote for Saturday:

"That which does not kill us, makes us stronger."

Seriously?  Shut it.

What doesn't kill us changes us.  We can't endure a life-threatening event without being forever changed.  Maybe we become stronger; maybe not.  Maybe it means a different appreciation for life, or love, or ourselves. Maybe we are just Changed, different, not the same.  It might take us a while to figure out what all of that means.  But not being strong does not make us weak.

Right now I don't want to be strong, I can't be strong, I'm simply not.

The first time we rode this roller coaster I was reasonably optimistic, felt strong and confident, was determined to "beat this" and go about my life.  This time, though, I'm still reeling from being blindsided by this new (??) diagnosis.  Four years.  Only four years.  And a new cancer - really, in the same place area as my previous cancer?  But without all the necessary information in front of me right now, it's easy for my mind to wander and wonder.  Is this a "new" diagnosis, or a recurrence of the previous cancer?  I don't yet have a stage - don't know the true size, don't know about lymph node involvement, don't know if it's set up shop anywhere else in my body.  I learned Wednesday that there was not enough tissue recovered during the biopsy to complete the testing for the third (and in some ways, most important) hormone receptor, the Her2neu.  So no treatment plan in place, and now surgery in a week to biopsy more tissue that will also include an attempt to map and biopsy my lymph nodes.  I may also have a port placed for chemo, but only once the size of the cancer is determined.  Unless the decision is mastectomy first, but only no port if the recommendation is a double mastectomy.

All of this information, that I don't have, it matters.  So frickin' stuck in "what if's" and "maybe's" instead of planning and moving forward.  The lack of control and knowledge is maddening and frustrating and exhausting.

I'm tired - really tired, and sad, and angry.  Anger like I've never felt before.  A sense of surrealism to everything I do right now:  folding laundry, driving, watching TV, chopping fruit.  All the energy has drained from my being, my soul, and disappeared.  I find myself forcing movement forward, feeling almost disconnected from my being.
And then...

Then there are moments of grace and beauty, where my heart feels like it is exploding with love and joy and happiness.  It's a feeling so profound that I think, I believe, it's the very essence of Life and Peace.  Ice skating with the grandkids I watch Luke, brave and determined, falling but getting right back up and trying again.  He pushes the skating "walker" forward a few feet then skates towards it, pushes it again, skates to catch it again.  Over and over, laughing with delight because he conquered something that an hour ago had him wobbly and clinging to the walker with a death grip of fear.  Nevaeh is skating on one foot, turning around, skating backwards, tripping and falling but up in an instant with a quick "oops!" and another attempt.  Their eyes shine with excitement and wonder and adventure, and for this one moment it's magical.  And every little thing falls away because all that ever matters is this.

I don't have energy to be strong right now, but moments like these make me want to at least try.

Second verse, same as the first...

It's been a long time since I've been here.  My last post was almost three years ago!!!  I haven't even been by to read or check for comments in over a year.  I'd started this blog to document my journey with breast cancer, and after treatment (and some scares), every day became another day of living without cancer.  In fact, life became beautiful and busy, filled with love and laughter and fun and excitement.  Weddings!!  Grandchildren!!  New jobs!!  Home improvements!!  Half marathon training!!  Travel!!  Yoga teaching!!  Hubby and family and friends...

You know - the stuff of normal life.

A couple of weeks ago was the fourth anniversary of my first chemo.  I was so busy Livin' that I actually forgot.  I remembered the next day, felt mildly nostalgic (and just a little naseous), and then the moment was over.  Move along...nothing to see here...

I had an appointment with my surgeon that Friday; I found another lump near the first area of cancer, but I'd had a cyst there a couple of years ago and we removed it and all was well.  My surgeon and oncologist continue to remind me - early stage, lots of tough treatment, go live your life and don't worry about recurrence, you'll be fine.  So I wasn't worried about the appointment with the surgeon, almost forgot, in fact, because I was so busy Livin'.

"So it's a cyst," I said to the surgeon (because I've been to medical school and I know these things).  "Let's poke it with a needle and be done with it."  He pushes it around, tries to pick it up, calls in another doctor.  They talk.  He shakes his head, sends me over to the hospital for an ultrasound.  The tech there takes her time and let's me watch the US screen; she's young and sweet and we talk about the weather and my daughter's recent wedding and what the HELL is that thing on the screen?  It looks like Jabba the Hut except a little uglier, all fat and jagged and dark and mean.  *click* there's one picture and *click* there's another and *blip* now we've got measurements of Jabba.  She wipes the gooey gel off Lucy and announces she'll "be right back."  

I lay there and think about my next long run - do I brave the cold and ice or just run the hamster-wheel track at the Y again (where 5 miles is 80 revolutions...oy...)  The tech returns with the radiologist in tow.  They whisper (by the way - that's just plain rude.  Secrets don't make friends...) and the doctor plops gooey gel on Lucy and does his own rolling search for Jabba......riiiiiight there.  And there.  And here's another view.  *click*  *measure*  And he announces he'll "be right back."

I'm a little slow sometimes, and just as it begins to dawn on me that perhaps this isn't just another cyst, the radiologist returns.  I hear words like, "solid mass" and "irregular borders" and "taller than wide" and "echogenic" and "shadowing", and he'd gone out to call my surgeon but the surgeon is in surgery so he calls the surgical suite to discuss this, and 

*boom*  There's that sinky, swaying feeling where all the air leaves your lungs and your head spins and your vision tunnels down to the lightswitch on the wall and words don't have meaning anymore and you can't really hear what's being said but the conversation goes on without you and the only thing that comes out of your mouth is

Fuck

Oops.  He smiles a sad sort of half-smile.  I tell him I've been down this road before so I ask, "Is it a 4 or a 5?"  He hesitates briefly, realizing I'm an edumacated cancer survivor and says, "I can't give it a 5 because that's a slam-dunk and I need a tissue sample, so I'm going to say 4c."

These numbers refer to the Birads rating system (Breast Imaging Reporting and Data System), which assigns numbers 0-6 to mammograms and ultrasounds as a means of standardizing reports and describing risk of breast cancer.  Anyone who's had a mammogram and received that letter in the mail may have seen the number, but it goes something like this:

0 = incomplete, more imaging needed

1 = negative findings

2 = benign findings

3 = probably benign (less than 2% chance of malignancy)

4 = suspicious (overall 20% - 35% chance of cancer, range of 2% - 95%)

In the 4 category are three sub-categories:

4a = low suspicion of malignancy (>2% - <10%)

4b = intermediate suspicion of malignancy (>10% - <50%)

4c = moderate concern, but not classic for malignancy (>50% - <95%)

5 = Highly suggestive of malignancy (95% chance of cancer)

6 = Known malignancy

He tells me he'll write the US report that weekend and fax it over to the surgeon so he has it first thing Monday morning.

And so the Long Weekend Wait begins (cue the violins...)

Ken and I - we Know, with that capital K of Knowing.  Been here before, Knowing before being told.  It's not reactionary, it's not catastrophizing - it's simply Knowing.  So we let it go for the weekend.  We run, have fun, go shopping, keep busy Livin'.

First thing Monday morning the phone rings - and doesn't stop.  The oncology NP calls to say they've seen the US report and wants to schedule a "planning meeting" with the Oncologist.  "But I don't have a diagnosis yet, what are we planning?"  She says they want to get the scans on the books, talk about next steps...  "But I don't have a diagnosis YET," I say again...  I leave her with the promise to call when I schedule my biopsy.  

The Oncologist's assistant calls to schedule an appointment (can't dodge that bullet apparently).

The surgeon's office calls to schedule the biopsy for Wednesday.  Then the hospital calls to pre-register for the biopsy.  Then another hospital staff calls to go over the biopsy procedure and pre-requirements.  "No bloodthinners for five days before the procedure...well, nevermind since we've only got two days.  Just don't take any Tylenol or aspirin or anything before then, okay?"

Okay.

The biopsy is an ultrasound-guided vacuum-assisted biopsy.  Let's just say that Lucy is numb from stem to stern; a small incision is made and a very large needle is inserted to take core tissue samples of the tumor, four in all.  They allow Ken to stay in the room and he watches (in fascination, of course) from the corner.  When it's over they insert a small titanium marker and then send me for a mammogram to ensure they can see the marker.

The oncology nurse navigator comes to visit before the mammogram.  We have a few minutes to talk about what all this means.  She lets me know they're level of concern is "up there".  We laughingly agree this sucks.  She tells us that it'll take at least two days for results - which likely means another Long Weekend Wait.  But since Ken and I already Know, we just get back to Livin'.

Ken reminds me later, however, that our GP has Saturday office hours, and so we pop in for a quick visit on Saturday morning.  And sure enough, the results are in.  No one smiles as they print and copy and stamp the report.  Oh well - we had a little bit of hope.

So all of these words, the telling of this super-long story, is to let you know that the biopsy is positive for breast cancer.  Not only is is positive, but it's also negative - as in, no estrogen receptors, no progesterone receptors, so it looks like this:

ER-, PR-

Okay, so now we freak out just a little.  This is not a recurrence of my previous cancer, which had estrogen receptors (ER+).  This is a new, completely different breast cancer.  But it's a new cancer exactly next to the place of my previous cancer.  It's been in there for a while - maybe through previous chemo and radiation (including targeted boosts to that very area).  WTF?

We're still waiting on another piece of important information - the results of the Her2neu testing.  That is the last of the three hormone receptors that completes the picture and tells us what treatment is necessary.  If the Her2 is negative, then I have Triple Negative (TN) breast cancer.  Being ER- means my cancer is not being driven or affected by estrogen, so Tamoxifen or other Aromatase inhibitors, which are significant and valuable treatment options in breast cancer, will not benefit me.  If the Her2 is positive, then I will need to add Herceptin and possibly Perjeta to my chemo regimine.  TN is often associated with a BRCA1 or BRCA 2 mutation, so I may finally get the genetic testing I'd asked for four years ago.

So there it is.  It really does kind of suck.  We don't have a treatment plan in place just yet.  Chemo, surgery, reconstruction - it'll all come together soon enough.

But for now, we take a few moments to absorb all this new, different, interesting and (yes) scary information.  And we keep on Livin'.

It's what I know how to do best now.  And I'll do it again soon, real soon.