Three R’s

Screen Shot 2015-01-29 at 9.53.45 PMFor whatever strange reason, hearing that one singular word last week (remission!) was peculiarly hard for me to absorb.  Sure, the CT scan showed great results,  so logic would say I should just breathe in the good news, revel in it and joyfully celebrate.  This whole journey has been so peculiar from the outset.  It’s hard to emotionally stand down, take a step back and ease up.

After my oncologist happily declared my remission, we went on to discuss next steps in the treatment plan. Steps which are above and beyond the ongoing schedule of infusions that I continue to receive every three weeks.  We discussed other tools in the weapon arsenal, one of which is radiation. Given the outstanding results of my CT scan, my oncologist felt the discussion should continue with a specialist in radiation oncology.  So she set me up for a consultation appointment with the radiation oncologist who is also a member of the ‘tumor board’…a weekly gathering of highly skilled physicians who provide a forum for discussing complex cases that require an integrated and multi-disciplinary approach to treatment.

Hubby and I met with him two days ago. Turns out, he’s very familiar with my case (and has been following it for quite some time) because it was thoroughly reviewed and discussed with the tumor board months ago.  And given my history with cancer, which my entire medical team thought we’d licked eleven years ago, he pointed out some unknowns.

First, there’s considerable question (and no way of knowing) whether or not my cancer is an actual recurrence from eleven years ago.  The possibility exists that there might have been ‘rogue cells’ left behind which have since migrated to a new location and thrown out a new twist in the form of a gene mutation…making this a much more aggressive cancer now.  The migration scenario isn’t impossible, but it’s also not terribly likely given the scope of multiple surgeries I endured all those years ago. However, the fact still remains: there is no way of knowing for sure.

Second, although the cancer was found in the axillary tissue adjacent to and tucked up around a swollen lymph node, the swollen node proper did not have cancer cells present. So, one might presume that the cancer had traveled no further, although the pathologist reported that there was ‘likely lymphatic invasion’ based on his findings that the adjoining tissue had cancer ‘percolating throughout’.  Which leaves the possibility that the cancer could have already attacked nodes which would no longer be detectable on the scans.  And we already know that scans don’t catch all cancer, especially microscopic in nature.  I found that out eleven years ago at the very beginning of my cancer journey.

As hubby and I listened to what is UNKNOWN about the particulars of my case, I felt oddly assured.  The mighty fight is going to continue, even after six hard rounds of chemotherapy and a host of bizarre and annoying side effects.  Even with an excellent CT scan result,  that one singular R word, remission, rings awkwardly in my ears.  I would love to be convinced about remission with absolute certainty, but the fact of the matter is…I feel no certainty about this.  Cancer is a nasty beast.

Oh how I would love to grab that word ‘remission’, knowing confidently that it has been firmly affixed to my medical records.  But there’s an unease that I can’t deny.  A discomfort, an intuition…and it’s screaming at me:  ‘Tread lightly! Eyes wide open! Insidious enemy lurking! Don’t let your guard down!‘  

Which brings me to the second R word.  Radiation.

I’m going for twenty five rounds of it, five days a week for five straight weeks.  Based on the brazen return of this enemy, and with the use of a linear accelerator (doesn’t that just sound so freakin’ awesome?!) we’re going to blast the hell out of the whole damn lymph node playground.  There will be no percolating allowed.

Remission and Radiation.         Radiation and Remission.

Those two R’s go hand-in-hand, clearly.  The third R?

RELIEF.

One Singular Word.

Never in my wildest dreams did I expect the sound of just one singular word to be so pivotal to my sense of well being.  It’s been a wild ride, these last six months.  A left-field diagnosis that came with a nasty gene mutation I’d never heard of (gene mutation? Who the hell expects THAT to be on their medical radar?) It was so surreal to me, all I could think of was the same three words, over and over again:  I have WHAT?  (picture a deer staring into the headlights)    What?  (still a deer staring into the headlights)  I have WHAT?   (you’ve got the visual now, right?)

Because time was of the essence, I was immediately catapulted to a journey that took me from what I thought was a ‘more than acceptable’ and maybe even an ‘above average’ life of really great (albeit aging) health and plunked me down hard forcing me to face a future that statistically says my life is going to be substantially abbreviated… thanks to this mutant ninja gene mutation that moves at a very stealthy clip. In short: prognosis statistically is grim, and I know this because the internet tells me so.  The oncologist didn’t say it that way.  She said This is a disease that is best managed in the here and now.  Cleverly crafted phrasing that drove the message home.

BUT, statistics were garnered from studies of patients that didn’t include me, and from studies that weren’t from the here and now, but from the then, a.k.a. yesterday.  Diagnosed in the here and now, medical technology has advanced since yesterday, and miraculously produced some new extremely promising drugs.  They can’t CURE me, but they can sure tip the scales in my favor…maybe even buy me LOTS more time.  I’ll be on these drugs for the long haul, every three weeks by IV infusion.  They go after the gene itself, direct to the crime scene.  Bada bim, bada boom.

The round of chemo drugs I just finished go everywhere…they invade the whole damned community, killing everything they can in order to sleuth out the bad guys.  Well, they got my hair, and they are STILL killing my finger nails, and even the nerves in the bottom of my feet.  But in the grand scheme of things?  Who cares… it’s just hair.  Hair and finger nails will grow back eventually.  And, although incredibly annoying …well, all these side effects from nasty chemo are incredibly annoying, even numb feet are no big deal. No, really.  I can’t feel my toes or the balls of my feet, but hey; no biggie.  They’re just feet.  I can wobble around with the best of ’em.  There’s shoes for that problem, right?  Well, I’ll have to get back to you on that one.  But guaranteed, I’ll be back out there whacking golf balls if I have to use walking stilts to get around the course.  Mark my words!

The singular word that changed my sense of well being?  Nope, it wasn’t CANCER…that nasty six letter word only served to bring out my own stealth ninja instinct to kick cancer’s butt.  Cancer will NEVER define me.  It tried once before, eleven years ago when I endured multiple surgeries, each one with additional bad news until I finally forfeited body parts. I don’t need that stuff anyhow.  It’s just body parts, not major organs.  Unneeded body parts?  I’ll take my future, thank you.

So, then… you’re probably wondering what IS that singular word that’s become so pivotal to my sense of well being.  I just heard it today, actually.  It was joyously pronounced by my oncologist.  REMISSION.     REMISSION.  I am IN remission.  I am in FULL REMISSION.

As hubby and I were getting back into our car, preparing to head home to Marin County, I  had to ask.  Did she say I was in remission? Did she use that exact word?  Hubby happily confirmed what I already knew she’d said, exactly. She said I was IN REMISSION. She was smiling broadly when she said it and she’s not a smiler, normally.  She told me I’d ‘responded to the chemo extremely well.’

Actually, I simply showed up when scheduled, my Portia (to the newbies here, Portia is my chest port…she’s implanted, I HAD to give her a name) did her job channeling those creepy drugs from the IV drip bags directly into my heart and onward throughout the rest of my body.  I ‘responded’ the only way I know how to respond…mentally prepared and ready for the fight.  Throughout my lifetime, that example has been set for me time and time again. My peeps don’t mess around.

REMISSION.  Peculiarly hard to wrap my brain around that word…just like it’s been so hard to wrap my brain around this stinkin’ gene mutation that they tell me I have. I’ll always have it …lurking….and because of that, I will continue to go forward with those new breakthrough drugs, getting them via IV drip every three weeks as planned.  Portia and I will be a team for the long haul, or at least the foreseeable future.  But today? The shadow of ‘a fight to the death’ has been temporarily lifted.  My silver linings are glowing.  They’re almost blinding, in fact.   Damn.  It feels so good.

REMISSION.  Now THAT’S a great word.  A word to celebrate, to worship, to pray to God for.  I hope it stays glued to my medical chart for years to come.  Because I want to drive nails into that word, to ensure it NEVER leaves my medical chart.

CANCER, you will never define me.  Even if you prove those damned medical statistics out, you will NEVER define who I am.  My life, my ‘new normal’ will march onward because I keep my eyes on the horizon, I don’t look down, and I don’t give a crap what you’ve got up your sleeve.  I have an ARSENAL stockpiled; I’ve been blessed with a medical team that is truly outstanding, not to mention a host of friends and family who surround me with unending support, nurturing, and unequivocal love. I’ve got a hubby who continues to love me through every single moment, whether it be high or low or tearful or not. He is there with me every step of the way.

And finally, I’ve got the instinct of a ninja SURVIVOR.  I’ve been trained by the best of the best….I’m tellin’ ya.  Don’t be messing with me.  I GOT THIS.       And, now…if you’ll excuse me, I’ve got a life to get back to.

Mount Burdell