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?
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?"
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.
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.”