30 January 2009

The Long & Winding, Shiteous Road (that Hopefully Leads to the Land of NED)

That hospital smell, all antiseptic and institutional; it attaches itself to you like you applied it on purpose: A dab behind your ears, another dab along some cleavage whose days are numbered. I’ve showered, changed clothes, cut the hospital-scented bracelets from my wrists, but I still can’t dispel the smell. Especially from my hands. I’ve been washing them like an OCD-er. There have been aggressive applications of Purell and assorted hand lotions. I’m looking at my hands, smelling them, looking at them, then smelling them again. It’s like I’m possessed by a hybrid of Lady MacBeth and Mary Katherine Gallagher.

I’m sure we’ll get used to this, however.

We’ve worn a path between the South Shore and Dana Farber the past few days, one that will be well utilized in the coming months. Walking into the Dana this week was like walking into the land of Oz. It was brighter, more cheerful, and gave you the sense that all the frenetic scrambling ended here. The walls were adorned with Red Sox paraphernalia and colorful artwork and information on all kinds of programs and support groups. Oh, and there was free food everywhere! Every time, I walked into a department, I was expecting someone to tell me I was in the wrong place. But I never was. Had I been, I’m 100 percent sure someone would’ve walked me to the right place and made a phone call to let whomever was expecting me know I was on my way.

In One Room
My oncologist Ann, her fellow Katie, and surgeon Michele sat with us, off and on for five hours -- in the same room -- bouncing ideas off each other. They answered all of our questions and began personalizing my treatment plan, incorporating James' and my feelings and wants into each decision. They explained why they want to do a certain treatment, how it works and, most important, what we’ll do if it doesn’t.

Basically, all I had to do was show up.

ANN: We’re missing one of the pathology reports from your biopsy that we’re going to need.

ME: (clicking around on my phone to find that number, trying to remember that woman’s name in medical records)…Edna! Let me call Edna!

ANN: No, no, it’s on its way. We already talked to them. It’s taken care of.

It's taken care of. Everything was. Their efficiency blew me away only to be outdone by their confidence in driving the beast from my body. Hearing them talk about chemo, surgery and “radiating the crap” out of this cancer fired me up even though I’m dreading every moment of it. They fired me up even more when they said we are going for the cure, not just a successful treatment of this cancer that I can now identify without a cheat sheet: HER2/neu 2+ ER-/PR-, Grade 3, Stage III.

So, together, we roadmapped a plan for treatment, one that will hopefully be as effective as it is grueling. It's going to be a long, strange, shiteous 14-15 month trip, but if it leads to the land of NED (No Evidence of Disease) it’ll be worth it 100 times over.

This is the first and last time I will discuss the treatment in one big block. From herein, it’ll be broken up into manageable chunks; isolate and attack, one day, one treatment at a time. Here’s my deal:

1.) Five months of chemo broken up into two stages:
a) Two months of aggressive chemotherapy with two potent drugs called Adriamycin& Cytoxan (A/C). Bald as an egg by day 10. Fatigued, immobile, legless. I’ll mainline this poison every other Monday for two months, so it’s really only four doses. One week of shite, one week of normalcy, etc. lather, rinse, repeat.
b) Three months of two less scary drugs: Taxol and Herceptin (the supposed HER2 wonder drug). Many people are able to resume normal activities during the T/H stage of treatment. I’ll get this vein cocktail every Monday for three months.

2.) A Mid-Summer Double Mastectomy

3.) Radiation – every day – for seven weeks.

4.) Herceptin through at least April 2010

5.) Reconstruction. Get a new set -- the 2010 models

6.) Hopefully be a huge hit at active adult communities in Florida in 20 years with my perky, albeit immobile, implants.

Getting Wiggy
Katie is printing out all of my prescriptions for me at breakneck speed, all of which will be ready for pick up at the pharmacy before we even reach the elevator bank. Katie explains I have meds for nauseau, anxiety, a shot to boost white blood cells and prescription for a wig. Wha? I though I'd heard her wrong, but it's true. I have a prescription for a WIG. I was expecting to just pop on over to Drag Queen Dorothy’s on Mass Ave. and pick up a few new looks (which I still plan to do - fun with baldness). But now I can get a legit wig too, something I can wear if I have to go to the kids' school or to the market when I don't want to be stared at.

Obviously, we’re going to have to talk to the kids this week about what's going to start happening. I am talking to a social worker at the Dana, to Nurse Tracy O and my friend-who-also-happens-to-be-a-therapist Amy about how to approach the conversation. We’re not going to get deep into the cancer thing but we will address the baldness and why mom’s so down and out and telling everyone to please shut the f up 24/7. Most have advised us to use our instincts in how much we tell them, because, after all, we know the kids best. I for one know my kids are going to think the baldness is absolutely, fall down hysterical. And I want to do everything we can to foster that. So, next weekend, with the help of Maria, we are going to let the kids cut off all my hair. Then when I'm bald, maybe I'll let them stick some temporary tattoos on my head.

11 comments:

Roving Lemon said...

Thanks for the update for your far-flung correspondents. I'm so, so glad you're going to be at DF--this is still going to suck beyond belief, but at least it's going to suck with the best medical care and support there is.

I'm praying now, not only for NED down the road, but also for you to get whatever you need to get through the next steps.

Courage, mon amie.

Nx

Dawn said...

Kate,

You've got me laughing and crying at the same time!

So happy to know that you're in the best hands at DF. We're thinking of you everyday!


xoxo,
Dawn and Mike

Anonymous said...

All Mom's look great with temporary tatoos - go for it!!

Glad to see you have a great support system within DF. Always thinking of you.

T

jal said...

Wow - what a road. Of course you know we're all here for you but it bears repeating. If you can drink while on this stuff we've got a fully stocked bar at 155 and a great new iPhone app to try them. I'm also always available if you need a break downtown. Champagne bar at the Intercontinental? NED will arrive, of that I'm certain. Just promise me that none of your tattoos will be on your lower back.

Love ya, JAL.

PS - my word verification was "lingspru". Used in a sentence "They're going to lingspru that stuff right out of your body!"

Anonymous said...

I am so glad you (and your boobs) are in the right place, with the plan starting. Action is always better than inertia. And I love your plan for the haircut...so smart to let them have some control.
Continued power hugs across the cable lines!
Sarah D

stevieb said...

Katie
Great posting chalk me up to the crying and laughing at the same time, as you know I ride the Pan
Mass every year for the DF and it's comforting to hear the quality of your experience makes all that peddling worth it. Here's to NED!!!
Stevieb

Anonymous said...

kate,
you are wonderful, and special, your blog a joy and inspiration to read. keep on trucking.

love ya,
jojo

KT said...

Oh Miss Kate, Count me in for the laughing & crying too. The fact that you can find humor in this crappy, crappy situation is such a testament to your strength and brilliant outlook. I too am glad you're at the DF. You deserve nothing but the best!!

You're in our constant thoughts, girl. Let us know if you need anything at all. The kids would love to have a playdate - any day, any time. Just drop 'em off and go! Or stay and have a glass of tea and bitch your heart out. You deserve that too.

My verification word is "meezi". As in "Meezi the Land of NED on the horizon"! (Big party in 2010!)

XOXO - all the Taylors

Anonymous said...

Oh Kate, i should refrain from commenting until i wipe my eyes so as to see clearly what it is I type!

You are so strong and focused. I am inspired in so many ways by you! I want to walk/run/bike/sing/pole dance to raise money for all the support that the you are getting and will continue to get from the good people of DANA (your team sounds to be all woman...coincidence? i don't think so! I love Ann, Katie and Michele already...true soldiers each one).

Stay strong and funny. Both assets keep me going and I suspect will get us to NED all the faster.

Love Your FRIEND-who-happens-to-be-a-therapist!

Liz said...

Kate,

You are the best, writing is such a gift you give to all of us, and hopefully it's helping you at the same time.
Please remember when the days of nausua come and your feeling wiped, that your fiestiness/sassafras, your humor, your ability to touch others through your writing, will just be taking a rest, rejuvinating, readying itselt for the next outlet. And know how completely loved you are.

Liz

BG said...

Thanks for the update KJ. A detailed plan like that is a great first step. You will do this. If you ever want/need company while getting the drip, I'm due for a long lunch.