RUNNING ON EMPTY

I am a stage one invasive lobular cancer survivor.  I don’t know if that is really the stage since, at least in 2006, there was no uniform school of thought on how to stage lobular breast cancer.  I remember very little of what the oncologist said during my consultation.  I relied on my friend’s ears (and whose notes I still have) and my mom’s mouth (to ask the questions).

Very unlike me to relinquish the role of team captain but I was weary by the time I got to the oncologist.  I was at that “just do whatever you want with me” point in the treatment.  I already went through the routine mammo, the follow up sonogram, another follow up for magnified images, dropping the films at Sloan for review, a call from their radiologist whose initial reaction was “repeat in three months” until I told her my mom was a pre-menopausal breast cancer patient, two different "in office" biopsies (including the insertion of titanium clips for all future mammograms so they would immediately see there was “an area of interest” … and I’m wondering if this is this like a person of interest in a criminal investigation?)

And it continues.  A diagnosis of atypia, the consultation with the doctor who would become my breast surgeon, the surgical “gold standard biopsy” (waste of aforementioned titanium clips-surely they can sterilize and reuse them.  Isn’t titanium a rather expensive metal?), a cancer dx, a genetic consultation followed by a blood draw for Myriad Labs (court battle going on about THAT too.  “That” would be Myriad’s “patent” and I am on the fence despite what appears like a monopoly or something.  I think I PREFER if all the data is being handled by one lab.  I see what happens when too many hands get involved… shit ALWAYS falls through the cracks and someone is always thrown under the bus… and for the love of God, who in the hell came up with this Under the Bus thing.  It never existed and suddenly everywhere I turn I’m hearing about someone else being thrown under a bus).

Shall we continue?  An MRI (prior to sentinel node biopsy to make sure there wasn’t anything else “hiding” that might require surgical removal as long as I was going down for the count with the anesthesia), the sentinel node biopsy (and when I saw the miniscule size of the vial that was removed from a lead container resembling a missle large enough to take out a nuclear submarine I was a tad concerned something so well protected was actually getting injected into my body).  FYI, I had that done twice.  Good nurse for first injection, second go round, not so good.  Note to nurses: Have the patient lie down and ask the patient to take a deep breath.  Don’t just jab a needle filled with radioactive shit into the poor girl in the blue gown completely petrified and who is about to have an amputation of her breasts.  Let her at least lie down.  The stuff burns.  OKAY?? 

I’m not quite done yet, so just stay put please.  Getting more surgical results (lymph nodes all clear) but during that appointment I informed the surgeon I wanted a bilateral mastectomy, another appointment with genetics to get the BRCA results (two mutations, both of unknown significance… what a waste of blood), meeting with Dr. VERY Hot Plastic Surgeon who “felt me up” in front of my husband…..   surgery schedule coordinated between Hot Doc and the Breast Surgeon…  

This is a timeline of what occurred between April 21, 2006 and September 13, 2006.  In between all of this, I had a neuroma removed from my foot (remember how important the right shoes are if one might need to conquer the world) and squeezed in my last PRE CANCER vacation.  A family trip to Italy.  Oh, and got pulled over by a cop the day I signed the consent forms for The Big Surgery.  Shout out to the officer who let us go when he saw me sobbing in the front seat of the car.  And yes, a bit of gratitude from my husband for getting to use MY C Card to get out of a speeding ticket might be nice (even five years later).

It was after all of this but before The Big Surgery that I had my oncology consult.  He could have said, “Take her out back and shoot her,” and I would have just asked if I could please be seated in a comfortable chair for the process.  I was THAT exhausted and tired of the blue gowns and the doctors and I hadn’t even BEGUN the good stuff yet.   Have a little patience with me, please.  A cricket got into my house and it’s presently driving me crazy.  I have to scroll up a second.  This chirping is extremely distracting.  And, I think I’ve already make it crystal clear that I don’t perform well with distractions.

Ahhh, yes.  At what stage is my cancer?  We are the three little monkeys sitting in the chairs in front of the man who would soon become someone I trusted more than anyone on the planet.  He spoke, my girlfriend furiously took notes and my mom did her version of the Spanish Inquisition, “What are you going to do to my daughter?”  In 1987-88 her chemo SUCKED.  (No dripping of drugs back then, everything was “pushed”….. several vials of brightly colored poisons….)  She was being protective.  It’s what moms do, right?

I recall asking about the OncoDx test which he felt was unnecessary.  The test was relatively new (I am very good at this needle in the haystack thing) and his feeling was that I would likely return a “mid range” score meaning, “no definitive result.”  Having already wasted blood with Myraid, I was done with that discussion.

He explained how lobular cancer is viewed by the oncology world.  Invasive lobular breast cancer?  The Cliff Note version.  It’s not a lump (that’s ductal and accounts for about 80% of all BC dx).  ILC accounts for about 10% of the breast cancers.  My note taking BEST friend in the whole world described it in a way that’s easiest to understand.  “It’s like someone took a pepper shaker and shook it on her breast.”  There were two schools of thought about how this particular breast cancer should be staged.

The problem with lobular BC is that there is no tumor to measure and this is an important piece of the staging process.  He went on to explain that some doctors believed the size of the largest “pepper speck” should be used to determine tumor size.  Others felt the proper procedure was to add up the sizes of all of these teeny tiny tumors and the sum total is the tumor size for staging purposes.  My doctor explained his feeling was that neither theory was quite right.  He accepted neither and incorporated both theories.

In other words, just like my BRCA test was inconclusive, I wasn’t going to get a concrete answer with this staging issue either.  The NCCN guideline books are inches thick for every single kind of cancer.  And I was not going to have a tumor size to work with here??  I do think I already made my wisecrack about size matters in a prior entry.

What did I walk away with after this appointment?  I have no idea what “stage” I am so I choose the best:  Stage 1.  My chemotherapy regiment of CMF would be eight rounds and it was unlikely I would LOSE MY HAIR (can someone explain how this becomes our worst fear when staring down the barrel of the Cancer Gun?).  And this whole chemotherapy thing (which is how I apparently landed here, blogging and lamenting about my brain which seems to have been left behind in the journey toward survivorship) was about to take a back seat as I prepared for a week long, all out, old fashioned Italian style wake in advance of the Funeral For My Breasts.