27 January 2009

Everything in its Right Place

The date Jan. 27 struck me as familiar this morning. I woke up feeling like I'd forgotten something. My iCal showed that it’s Katie’s (sitter/magician) 29th birthday, but there was something else too. It came to me as I was making my third cup of green tea: Today was supposed to be the original date of my first ultrasound and mammogram. Absolutely astounding. I would have yet to disembark on this crapbasket of a journey had I not consistently wigged out over the past three weeks.

When people say "be your own advocate," they're speaking in euphemism. It's more like "be your own shrill zealot." Granted, I had to chase appointments around every corner of the city, which was far from ideal: I had an ultrasound in Brookline, a mammogram in Davis Square, an MRI at the Brigham, a surgical consult in Kenmore Square, back to Davis Square for a biopsy, a CT scan at Weymouth Woods and then back to the Brigham for a bone scan. People who have had scares and been down this path (usually with all of the above appointments occuring within a few days under the same roof) have asked how the hell such a thing could happen, especially when a) I have a great health plan and b) the doctors determined early on that this was probably an aggressive malignancy.

I’ll tell you how.

I have never been sick before. It’s been years since I’ve even had a cold. It's been at least six years since I’ve had a migraine. Aside from pre-natal visits, c-sections and annual ob/gyn exams, I haven't seen a doctor. My primary care physician that I had for more than 12 years -- and loved -- pulled up stakes in Sept 2008 and moved to Vermont to live in a cabin and raise horses on a neighboring farm. Before she left, she assigned me a kind of "acting" PCP until I could choose another one. That said, I was unfazed by the whole thing because I figured this acting doc would be perfectly capable of prescribing some antiobiotics if need be. What I failed to consider, however, is face time and relationship building. When you're not in someone's face, you tend to fall through the cracks. Nobody is really looking out for you because nobody knows who the hell you are. So, you have to make yourself known -- and fast -- which means getting past all the bureaucratic sphincters.

Flashback to Jan. 6
This whole experience has been like a weak episode of "24" from the very beginning. The doc (Diane) who first identified the lump in lefty as "a palpable mass" told the desk staff to book me an ultrasound and mammogram asap. They came back with Jan. 27 in Kenmore Sq. She said that was too long to wait and told them to call around for something sooner. She kept getting the same android response: "Our orders are to book at Kenmore. Mustn't diverge from protocol. Kenmore." Then, Diane was Jack Bauer going rogue. "That's not going to work, damnit!" She grabbed the phone and got me an appointment for the next day in Brookline.

That night, I got a call saying that my appointment had been cancelled and I'd been rescheduled for Jan. 27 in Kenmore Sq. The MFs-that-be overruled her.

So, I called my OB and my midwife with whom I have great relationships and plenty of face time (not to mention, crazy-nude-the-fucking-epidural-isn't-working time) To me, they're not faceless doctors. They are Patty and Helen. They will return calls at all hours and in between delivering babies. That night, at 11 p.m., from Patty: "You’re going in for the ultrasound tomorrow at 9 a.m. and a have a STAT mammogram order in. "

Tues, Jan. 13
I'm standing in a hospital dressing room cubicle looking out onto Davis Square. There's a whispery draft breezing up the front of my johnny gown, causing some serious Chinese staples. For a moment, I'm aware of my bizarre perspective -- standing in a johnny, looking down at Johnny D's. The marquee shows Beatlejuice is playing in March. I wonder where I'll be then? And who replaced Brad Delp?

Just then, the dressing room curtain swishes open and shatters my daydream. Standing before me are Kathy-Ann who is Madame incarnate and her sidekick, Darlene, a powder keg of a woman.

"Kathryn, I don't know why they scheduled you for a diagnostic mammogram today. We don't do diagnostics on Tuesdays because we have no doctor here to look at them," Kathy-Ann says, looking at her clipboard and not at me. "So, we've got you on the schedule for 1 p.m. Friday, k?"

"You’re kidding me, right," I say. Then I instantly wonder how anyone can take me seriously standing there, hands on hips, boobs hanging out of the front of my johnny. "I'm at a mammography center and nobody here can give me a mammogram!?"

"I can give you a mammogram but there's no doctor here to read it," Darlene grunts.

I let my anger wash over me (which is NOT good for the tumor!)

"Fine. Give me the mammogram and I'll take the films somewhere else. I’m not leaving here until I get a MF mammogram," I say.

Madame and Darlene look at each other and then shuffle off around the corner to confer, presumably about when to call security.

Fortunately, Darlene's manner does not match her pitbull-ish presence. She told me she called a doctor from a nearby hospital. She'd do my mammogram now and would have the films ready by the time the doctor arrived. Thank you, Darlene.

DOC: "I'm glad you stayed. Your mammogram is very worrisome."

ME: (mishearing) Menacing?

DOC: Worrisome.

Is there a difference?

Thurs, Jan. 15
Now I'm at Kenmore (which is apparently unavoidable) for the surgical consult. The surgeon is 50ish with a super-calming voice and demeanor. She looks at all of my films and tells me -- straight up -- that I should prepare for this to be breast cancer. I appreciate her candor, but then she hands me the same old shite: "So let's get that biopsy scheduled, then. We can probably squeeze it in early next week."

Here we go again.

ME: "No, no. How about today."

SURG: "I don't think that's possible."

ME: "Can you at least check?"

~She checks~

SURG: "How about right now in Davis Sq.?"

Back to the Kathy-Ann and Darlene Show!

One hour later...
Kath numbs up lefty, the doc jams a needle the size of a small broomstick into the tumor and extracts a bunch of tissue samples.

We know what happens from there.

This week
The oncologist says she wants to start chemo this Friday, kicking off a frantic scramble for a second opinion. And the only place I want to get a second opinion is Dana Farber. In fact, I not only want a second opinion, I want to become a patient.

My sister- and brother-in-law, my friend Doreen, everybody I've spoken to who has gone there absolutely raves about the standard of care, the wonderful people, the unmatched network of support, etc. There shouldn't be a problem becoming a patient, but the super short notice is troubling. So P and J are working their DF network from the inside.

And from the outside, friends and family have called offering doctor recommendations and connections to friends or friends of friends in higher and healthier places. I start emailing doctors and nurses that someone may have heard about through so-and-so's friend's neighbor through the ex-boyfriend of her aunt's mother-in-law. Regardless of how tenuous the connection, we are working the six degrees of separation.

Aside: The past few weeks have been a lesson in who has your back. Someone told me that I'd find out who my friends are during this time. And I've found I have so many more than I'd ever imagined.

My Uncle Charlie, who is going through his own brand of cancer bullshit with my Aunt Jo Jo, (who, btw, is on the prayer lists of Protestants, lapsed Catholics, Tibetan monks and Indian healers worldwide), took the "why the f not" approach and rang up an acquaintance he sort of knows from a family of well-known philanthropists.

This led to a phone call yesterday beginning with the sentence, “Hello, Kathryn? This is the president’s office at Dana Farber calling.” Which led to an experience that was the exact opposite of every experience I've had since Jan. 6. (the epiphany indeed)

I learned they set up two appointments for me tomorrow morning, back to back -- not only in the same building, but on the same floor. Having ping ponged all over the city for three weeks, you have no idea how huge this is for me.

It gets better: The appointments are with a top breast surgeon and oncologist whose names I’ve heard over and over again as recommendations. The oncologist even specializes in breast cancer in women under 40. (At 39, I’m actually not considered “young” in cancerland, but at least I’m still in the same demographic -- and building.)

So, one million THANK YOUs to Uncle Chuck and to a philanthropist who was willing to make a call on behalf of a stranger. ~Bowing down in gratitude.~

This morning, I relayed this good news to my friend Doreen and she effortlessly handed me my quote of the day.

“Your head is in the right place and, now, your boobs are in the right hands.”

23 comments:

bg said...

OUTSTANDING! I'm so happy to hear that you're getting a 2nd opinion at Dana Farber, that your family connection is paying off, and you'll be able to get this done in 1 place. Good good good good.

Side note - that pic of Madame you linked is freaky.

Roving Lemon said...

Yes, yes, yes to DF. They are the best. Become a patient there--that's what I'm praying for now.

Nxoxo

PS I had a nightmare vision reading this of you trying to find parking spaces in Kenmore Sq., Davis Sq., etc. About the last thing anyone needs in a situation like this is negotiating Boston traffic & parking!

Code Red said...

Way to go Uncle Charlie! So glad the stars finally aligned for you Kate!! The DF is the best for sure...so happy you (and your boobs) will be in the best hands. Love Doreen's quote! It still amazes me that you had a "worrisome" lump and still had to jump through hoops and threaten countless medical professionals with bodily harm to get some immediate attention. Onward and upward!! Be sure to tell TBS (top breast surgeon) that you have a very large group of pals prepared to come down on the DF like angry villagers wielding torches if they don't take care of you.

Oh yeah, and I have a bone to pick with Cancerland...what do you mean 39 is not young?! :)

chris seremetis said...

good stuff. its good to hear things go your way. dana farber is awesome. good luck tomorrow.

Paula said...

Kate...

Thanks for instructing me and my husband on what chinese staples are... I don't think he is ever going to be the same...

btw...jojo is looking for a good synagog (sp) to get her name on the list for mitzvahs.....know anyone....

My prayers will be with you tomorrow... I'll be bringing the Nana Rie bling with me everywhere I go now unitl i hear more good news....


Love you
P

Katie O. said...

YES! I am so happy to hear that people are gettin their asses in gear and doing the right thing.

I truly believe Kate, that when you put good out into the world, it comes back to you.

This latest update is strong proof!

Rock on!!!

sarah_derby said...

Once this has all become just a part of your life story, you need to teach a class in kicking ass. I will be in the front row.

Love, Doobs

Anonymous said...

katie, good luck tomorrow. i will be praying for you, along with my senior friends, they move mountains. love you, jojo

Bean Down Under said...

That is great news! Good luck with the 2nd opinion tomorrow.

Anonymous said...

Kate,
I am so glad you are with dana farber. They are awesome. We went through some of the hell you went through initially with my dad...Finally, after my dad's stem cell he stayed with dana farber...everything is right there/they treat you like a human being/your care is pretty much doctor driven and not patient driven/they care so much - they are like my dad's second family. We are very happy there - thank you thank you thank you uncle Charlie....you are in good hands....
Love,
Tracy O

Anonymous said...

It sounds like you are in the best hands. I have a friend that went through a very similar situation last year (chemo, surgery, radiation) and she is doing
fine today. I truly believe attitude has a big impact.

Thanks for keeping us all updated on your blog.
Sending positive thoughts and good wishes your way!!

Susan Sullivan

jal said...

Way to go Ms. Jackson! It's a shame you had to get nasty on them but it worked!!! Let me know if Mij need to get her nails out going forward.

Always thinking of you!

Nic said...

Kate,
After weeks of fighting and dropping the M F'er word you made it, now let them take care of you my friend.

Love that quote ! Make sure to share it with the team at Dana Farber !

Diana said...

The fact that you can find humor and insight into all that you're going through, WHILE you're going through this BS mutha fucker exerience is absolutlely amazing to me. You ROCK. I always knew you rocked. And now so will everyone in cancerland. Keep it up, F*er!!!!

CK said...

KJ, you're amazing, inspirational, hysterical, and just totally f'ing awesome! XOXO.

Anonymous said...

Dear KJ,
I have followed you across from Roving Lemon.....who i know from Oxford.
RL has been rooting for me from down under, and is prepared to kick arse on my behalf (actually, i think it might actually be his testicles, but you get the idea). So figured i should join up the link..
I just wanted to say that you are in my thoughts. Hang in there, it sounds like you are taking no crap, which is awesome. Stay focused and positive.

SR

Anonymous said...

Kate,

I hope you realize how helpful (and amazing) it is that you are able to share your experiences. Someone reading your blog who, in the future, may unfortunately need to know what to do under similar circumstances. Let's hope that doesn't happen, but if it does they will be ahead of the curve thanks to you.

You and your family are in my prayers.

Pat

LPD said...

God bless ya, KJ. Only you could inject "Chinese Staples" into a story about Cancer and put a smile on our faces in the midst of the weepies. Perhaps that can be your safety phrase throughout this experience. Whenever you feel overwhelmed, just shout out CHINESE STAPLES and think back to that carload of happy, tipsy college friends, radio blaring REM, rolling down Western Ave with fake ID's in hand towards a tavern where good times awaited us. "Close the window! It's cold! I'm getting..." Brownguy, mishearing, finishes the sentence, "DID YOU SAY CHINESE STAPLES???"

You've got the mighty Dana Farber on your side, and we're still here. Write your heart out, KJ. We're listening and we LOVE YOU.

doctoreama said...

DF rocks, as does Uncle Chuck and the philanthropist! Good luck, my dear friend. I'm in your corner for this smack down.

noternie said...

I'm hanging on every post. You are a great writer and I love the way you're jumping ugly when you need to in this whole cancer episode. (It IS an episode, a chapter.)

If only you were a fiction writer...

Keep up the fight.

Anonymous said...

Kate -

I invite you to read another blog that I follow.

http://toddlerplanet.wordpress.com/

Although she has a different, and more deadly type of cancer than you, she is extremely inspirational. There is an entry (it's the 2nd one) about the speech she gave at a Relay for Life kick-off.

Her strength and perserverance are amazing, much like I imagine yours will be.

I'm happy to hear you will begin your treatment at DF. My mom also so a top breast doc there and is a 13 year survivor now!

Anonymous said...

Way to go Kate! I will be sure to use "chinese staples" in some conversation over the next few days! haha Good luck with all the appts. You're still up there with my Mom on my prayer list.

T, Beave and the girls

Anonymous said...

kate- i read your blog on the day it was written but it took me forever to think of the brighton pizza place- imperial pizza- that delivered you meds and a slice back in your migrane days.. glad the migranes are a thing of the past but damn a migrane would be easier than fighting cancer...your in my thoughts- keep up the fight! gail