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.