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.
30 January 2009
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.”
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.”
24 January 2009
Unfurling
Yesterday's news shot me out of the bell jar like a bottle rocket. I'm back on top of the ticket; I've pulled my foot out of the grave and James has suspended his eHarmony account (for now.) Before the good news arrived, I was slowly unfurling from the fetal position and regrouping (and thinking about regrouping.) But yesterday, for the first time in several days, I could look at my kids without losing it.
When the wee brown ones are in your presence, you have to fake it like it's your full time job. Acting like nothing is wrong is hard work and most of it's in vain. First, they’re not easily fooled. Second, I'm a horrible actor. Third, my big fat face is a dead give away. Some women can bawl their eyes out of their sockets, then wipe away the tears with a delicate tissue and it's like it never happened. If I even sob a little, my face turns fuschia and swells up; my eyes narrow into coin slots and stay that way, sometimes up to 24 hours. So, every now and then, I catch Caroline or Paulie giving me the hairy eyeball: "You're suspect!"
Organ Thursday:
The CT scan was a blur. I was in a dark mood in the waiting room. James read a Men's Health and tried not to talk to me per my request. I choked down two barium smoothies -- you had to take a full 45 minutes to drink each one. 90 minutes of ass. The scan itself was less than 15 minutes. They injected some dye into my vein and then passed me through this giant donut that checked my organs for the beast. The donut part may have been a cartoon hallucination. I was starving.
On the way out of the hospital, we had a humorous parking lot sighting that wouldn't make sense or be funny so it's futile to describe it. So, we were both in better spirits once we got home. Caroline had drawn me this picture (left) and scotched taped it to the wall next to my bed. "Mommy, I know you don't feel good. I know you have a cold. This will make you feel better when you wake up." (It does.)
On her drawing, there were these little tadpole-looking black squiggly lines in the grass. "What are those," I asked.
She looked at me like I'd just emerged from a pod.
"WORMS!?"
Aside: Both kids have inherited my childhood hobby of keeping earthworms as pets in plastic buckets on the back deck. One time, they caught James dumping one of the buckets off the back deck. They remain traumatized and royally pissed.
I wanted to catch up on Thursday's Lost premiere, and Caroline beat me to the punch: "Let’s snuggle and watch Lost." She doesn't get the show but she's not afraid of it. She watches for Aaron sightings, that's about it. “Oh, Mom, look at him, he’s getting SO big.”
Paulie stood up on the coffee table while we were watching the show and turned around: "Mom, I’m going to shake my booty at you." He did and it was awesome.
That night, the Dell'Olios brought Thai from Wild Ginger over for dinner.
Up, up, up out of the bell jar.
Throw-us-a-Bone Friday:
Friday morning, I woke up feeling good, just wanting to get the bone scan out of the way and move on. I listened to WERS the whole ride into the Brigham and found a new favorite band (or at least favorite song -- "Coming Home"). This hardly ever happens to me anymore. I was car dancing. They're called "The 88" and their name stands for 88 constellations in the sky, 88 keys on the piano, the infinity sign, 88 cities in Los Angeles, 88 mph to get Back to the Future, etc. Love that. I think they've been around awhile. I have to start paying attention again.
I had all of my talismen along for the ride with me: Your emails and Facebook messages, wall posts, and blog comments. I also had Nana Rie's heart. My friend Amy, when I told her about Nana's survival, told me that in order to have survived breast cancer back in th 40s, you had to have had a strong heart. So I was going though some of Nana Rie’s funky jewelry and found a rhinestone-encrusted heart pin. I've been wearing it ever since for some luck.
While I was trying to park my wagon in a teeny tiny compact car spot, I was thinking about what my sister-in-law Paula said to me the day before about not looking online for case studies in my "type" of cancer, about how outcomes are as individual as the person, it's "your" cancer and yours alone. BTW, she told me all of this while she was mainlining chemo at the Dana. Talk about tough.
I met my mom at the Au Bon Pain near the main entrance. She also promised not to talk today and had a whole bag of tricks to avoid chit chat and be there for moral support. So, we went to nuclear medicine where they injected me with a radioactive dye at 9:30, and asked us to please loiter until 12:30. It takes 3-4 hours for the dye to settle into your bones.
For someone who didn't feel like talking, I couldn't shut up. I was talking non-stop - to my mom, the older gent sitting across from us, the cleaning people, everyone in the waiting room. Brandon Fraser was on one of the morning talk shows, jumping around and squealing like a monkey. This was very distracting to everyone.
An old man sitting in wheel chair in the corner barked up out of nowhere. "Who is that? He's obNOXious!!!"
"It's Brandon Fraser. He's an actor," the woman sitting next to me said.
"He's an ASS."
Seriously, there was something wrong with BF. While it's an elderly thing to say, I truly believe he was "on something."
My nervous talking behavior continued during the bone scan, which was the equivalent of being scanned like a photo in a leviathan scanner. I was making lame comments as a picture of my entire skeleton lit up like the night sky on the screen in front of me.
ME: You know, this nuclear dye can’t be good for you. If I didn't have cancer in my bones already, it’s definitely in there now. Har, har, har.
Bone Scanning Lady: (BSL) Yeah, just drink a lot of water and pee it out so it doesn’t stay in your system for too long.
ME: What do you see? Can you see anything?
BSL: I just see beautiful bones.
ME: I know you can’t tell me anything. You don’t say have to say anything. Just knock something off your desk if you see something.
BSL: (smiles at me like I'm an insane)
ME: I'm sorry. I've had three weekends in a row of waiting for tests to come back. They've all had shitty results. Three weeks is not a lot of time in the grand scheme but when you’re waiting for answers that could predict how much longer you may have to live, it’s a lifetime. I need to prepare myself for the worst.
When I was walking out, BSL grabbed my arm and whispered. "Between you and me, I don't think you have anything to worry about. I didn't see anything light up. It usually lights up. Don't tell anyone I said this, I could lose my job. Have a great weekend, ok?"
Thank you. Thank you. Thank you. I wanted to hug her.
I was all set to hang onto that piece of news all weekend but then the doctor called and kicked it up a notch with the "all clear" across the board. I wasn't supposed to get the results until next Tuesday or Wednesday. Needless to say, "faith" has replaced "fuck" as the F word of the weekend.
We'll take it. Even the doctor said she was surprised by the results and had expected to see more widespread disease. Before they scheduled the scans, they'd told me to prepare for that. I still can't even write what they'd originally predicted. I don't want to jinx this gift. I still have a locally advanced disease and it's still a serious situation with all kinds of ugly treatments and surgeries ahead, but wow, perspective is really everything, isn't it?
Organ Thursday:
The CT scan was a blur. I was in a dark mood in the waiting room. James read a Men's Health and tried not to talk to me per my request. I choked down two barium smoothies -- you had to take a full 45 minutes to drink each one. 90 minutes of ass. The scan itself was less than 15 minutes. They injected some dye into my vein and then passed me through this giant donut that checked my organs for the beast. The donut part may have been a cartoon hallucination. I was starving.
On the way out of the hospital, we had a humorous parking lot sighting that wouldn't make sense or be funny so it's futile to describe it. So, we were both in better spirits once we got home. Caroline had drawn me this picture (left) and scotched taped it to the wall next to my bed. "Mommy, I know you don't feel good. I know you have a cold. This will make you feel better when you wake up." (It does.)On her drawing, there were these little tadpole-looking black squiggly lines in the grass. "What are those," I asked.
She looked at me like I'd just emerged from a pod.
"WORMS!?"
Aside: Both kids have inherited my childhood hobby of keeping earthworms as pets in plastic buckets on the back deck. One time, they caught James dumping one of the buckets off the back deck. They remain traumatized and royally pissed.
I wanted to catch up on Thursday's Lost premiere, and Caroline beat me to the punch: "Let’s snuggle and watch Lost." She doesn't get the show but she's not afraid of it. She watches for Aaron sightings, that's about it. “Oh, Mom, look at him, he’s getting SO big.”
Paulie stood up on the coffee table while we were watching the show and turned around: "Mom, I’m going to shake my booty at you." He did and it was awesome.
That night, the Dell'Olios brought Thai from Wild Ginger over for dinner.
Up, up, up out of the bell jar.
Throw-us-a-Bone Friday:
Friday morning, I woke up feeling good, just wanting to get the bone scan out of the way and move on. I listened to WERS the whole ride into the Brigham and found a new favorite band (or at least favorite song -- "Coming Home"). This hardly ever happens to me anymore. I was car dancing. They're called "The 88" and their name stands for 88 constellations in the sky, 88 keys on the piano, the infinity sign, 88 cities in Los Angeles, 88 mph to get Back to the Future, etc. Love that. I think they've been around awhile. I have to start paying attention again.
I had all of my talismen along for the ride with me: Your emails and Facebook messages, wall posts, and blog comments. I also had Nana Rie's heart. My friend Amy, when I told her about Nana's survival, told me that in order to have survived breast cancer back in th 40s, you had to have had a strong heart. So I was going though some of Nana Rie’s funky jewelry and found a rhinestone-encrusted heart pin. I've been wearing it ever since for some luck.
While I was trying to park my wagon in a teeny tiny compact car spot, I was thinking about what my sister-in-law Paula said to me the day before about not looking online for case studies in my "type" of cancer, about how outcomes are as individual as the person, it's "your" cancer and yours alone. BTW, she told me all of this while she was mainlining chemo at the Dana. Talk about tough.
I met my mom at the Au Bon Pain near the main entrance. She also promised not to talk today and had a whole bag of tricks to avoid chit chat and be there for moral support. So, we went to nuclear medicine where they injected me with a radioactive dye at 9:30, and asked us to please loiter until 12:30. It takes 3-4 hours for the dye to settle into your bones.
For someone who didn't feel like talking, I couldn't shut up. I was talking non-stop - to my mom, the older gent sitting across from us, the cleaning people, everyone in the waiting room. Brandon Fraser was on one of the morning talk shows, jumping around and squealing like a monkey. This was very distracting to everyone.
An old man sitting in wheel chair in the corner barked up out of nowhere. "Who is that? He's obNOXious!!!"
"It's Brandon Fraser. He's an actor," the woman sitting next to me said.
"He's an ASS."
Seriously, there was something wrong with BF. While it's an elderly thing to say, I truly believe he was "on something."
My nervous talking behavior continued during the bone scan, which was the equivalent of being scanned like a photo in a leviathan scanner. I was making lame comments as a picture of my entire skeleton lit up like the night sky on the screen in front of me.
ME: You know, this nuclear dye can’t be good for you. If I didn't have cancer in my bones already, it’s definitely in there now. Har, har, har.
Bone Scanning Lady: (BSL) Yeah, just drink a lot of water and pee it out so it doesn’t stay in your system for too long.
ME: What do you see? Can you see anything?
BSL: I just see beautiful bones.
ME: I know you can’t tell me anything. You don’t say have to say anything. Just knock something off your desk if you see something.
BSL: (smiles at me like I'm an insane)
ME: I'm sorry. I've had three weekends in a row of waiting for tests to come back. They've all had shitty results. Three weeks is not a lot of time in the grand scheme but when you’re waiting for answers that could predict how much longer you may have to live, it’s a lifetime. I need to prepare myself for the worst.
When I was walking out, BSL grabbed my arm and whispered. "Between you and me, I don't think you have anything to worry about. I didn't see anything light up. It usually lights up. Don't tell anyone I said this, I could lose my job. Have a great weekend, ok?"
Thank you. Thank you. Thank you. I wanted to hug her.
I was all set to hang onto that piece of news all weekend but then the doctor called and kicked it up a notch with the "all clear" across the board. I wasn't supposed to get the results until next Tuesday or Wednesday. Needless to say, "faith" has replaced "fuck" as the F word of the weekend.
We'll take it. Even the doctor said she was surprised by the results and had expected to see more widespread disease. Before they scheduled the scans, they'd told me to prepare for that. I still can't even write what they'd originally predicted. I don't want to jinx this gift. I still have a locally advanced disease and it's still a serious situation with all kinds of ugly treatments and surgeries ahead, but wow, perspective is really everything, isn't it?
23 January 2009
GOOD NEWS!!!
CT scans: ALL CLEAR!
Bone scans: ALL CLEAR!
We've been thrown a bone this weekend and we plan on latching onto it like Vito on a leftover bone-in filet from Abe & Louie's!
More later...heading out to celebrate!
Thank you, thank you, thank you for all of your positive thoughts and prayers! You have no idea how much strength you have given us!
xo KJ
Bone scans: ALL CLEAR!
We've been thrown a bone this weekend and we plan on latching onto it like Vito on a leftover bone-in filet from Abe & Louie's!
More later...heading out to celebrate!
Thank you, thank you, thank you for all of your positive thoughts and prayers! You have no idea how much strength you have given us!
xo KJ
21 January 2009
Pipe*
I'm quickly learning that every test in cancerland takes 24-48 hours to yield results. That doesn't include weekends, though. So, if you get a test on a Friday, you should not entertain any delusions about getting answers within 24-48 hours. You've got to sweat it out doubletime. So, I guess the logic behind closing all labs down on the weekends is that cancer doesn't spread on Saturdays and Sundays. After dividing and multiplying all week long, the cancer rests on the 6th and 7th days. And on holidays too apparently.
I'm impatient by nature and my anticipation is only exacerbated by the fact that there are life or death decisions hanging in the balance. This is not like waiting for a check to clear! Business days are irrelevant to the cancer patient who wants to know what she's dealing with.
That said, we got more bad news today. Our prayers were not answered on lymph nodes or hormone receptor status. In fact, we got a few extra surprises that we didn't want.
Verdict: The MRI revealed a 10-centimeter mass chock full of blood vessels that are surrounding, coddling and feeding this MF 1.7 cm tumor. (Picture a big mama with a million nipples feeding this odious thing) The MRI also showed "significant lymph node involvement" so I guess that one negative node was nothing to hang our hats on. Also, the tumor is hormone receptor negative, which means we can kiss that avenue of treatment goodbye. I will likely be kissing Lefty goodbye at some point, but at this point, I'm almost eager to do so.
According to the docs, I have HER2+ breast cancer which is the most aggressive kind you can get. Just a few years ago, HER2 was a death sentence but today -- thankfully -- they have a drug called Herceptin that has been very effective and gives HER2-ers the same shot as people with normal breast cancer. Still, because of the aggressive nature of the cancer, I will likely have to have chemo before and after surgery.
Aside: I've decided it's time to frontload the good times. Let's have some fun before I lose my hair and eyebrows and have to crayon on some Cholas.
Next steps: I have my abdominal, pelvic and chest scans tomorrow and a bone scan on Friday. I had to practically threaten a terrorist attack to get these appointments. After dropping bomb after bad-news bomb on me, the doc (not my doc) proceeded to tell me that my oncologist was out sick until Monday (apparently cancer cells stop spreading when your oncologist is out sick too) and I should follow up with her to schedule my scans, which at this point are booking out until early February.
My response to this was something like: no fucking fuckety fuck fuck fuck way, motherfucker.
Lesson learned: It never hurts to throw a rabid, profanity-laced tirade about standards of healthcare. Moments later, appointments magically opened up for tomorrow and Friday. I have a feeling there may be a police escort when I arrive, however.
Still, all this anger is NOT good for the tumor. That's my going to be my new mantra and I think it's going to come in handy. If someone is bothering me: "Please walk away, your bad energy is not good for the tumor." "Please piss off, your sourpuss is not good for the tumor."
According to the docs, I have HER2+ breast cancer which is the most aggressive kind you can get. Just a few years ago, HER2 was a death sentence but today -- thankfully -- they have a drug called Herceptin that has been very effective and gives HER2-ers the same shot as people with normal breast cancer. Still, because of the aggressive nature of the cancer, I will likely have to have chemo before and after surgery.
Aside: I've decided it's time to frontload the good times. Let's have some fun before I lose my hair and eyebrows and have to crayon on some Cholas.
Next steps: I have my abdominal, pelvic and chest scans tomorrow and a bone scan on Friday. I had to practically threaten a terrorist attack to get these appointments. After dropping bomb after bad-news bomb on me, the doc (not my doc) proceeded to tell me that my oncologist was out sick until Monday (apparently cancer cells stop spreading when your oncologist is out sick too) and I should follow up with her to schedule my scans, which at this point are booking out until early February.
My response to this was something like: no fucking fuckety fuck fuck fuck way, motherfucker.
Lesson learned: It never hurts to throw a rabid, profanity-laced tirade about standards of healthcare. Moments later, appointments magically opened up for tomorrow and Friday. I have a feeling there may be a police escort when I arrive, however.
Still, all this anger is NOT good for the tumor. That's my going to be my new mantra and I think it's going to come in handy. If someone is bothering me: "Please walk away, your bad energy is not good for the tumor." "Please piss off, your sourpuss is not good for the tumor."
Ugh. I've unraveled. I started writing this blog earlier about the positive forces in my life and the serendipitous ones that have cropped up - at the perfect time -- along the way. This morning, I posted my Facebook status as "up for the fight." This was before I got the news. The news literally brought me to my knees and rattled my faith today. So, tonight I'll knock myself out (Lost will be TiVoed) and wake up with a better attitude, a fighting attitude again tomorrow.
Aside: I still can't reconcile how I can be walking around, feeling as fantastic as I do, and be as sick as they tell me I am!
Call for prayers: Please pray this MF hasn't spread too much, especially to my organs. We're overdue for some good news. Throw us a bone!
*James came up with the title for this post. It says it all.
Aside: I still can't reconcile how I can be walking around, feeling as fantastic as I do, and be as sick as they tell me I am!
Call for prayers: Please pray this MF hasn't spread too much, especially to my organs. We're overdue for some good news. Throw us a bone!
*James came up with the title for this post. It says it all.
18 January 2009
Genes to Keep or Toss
Right now, such overwhelming gratitude: For the emails and phone calls. For the blog comments and kind gestures, words of encouragement and angry WTF rants. For the prayers, the Sanskrit healing chants, the “let’s get a coffee and go stare at the ocean” protocols. For the good food and episodic envelope or baggie with a chill pill or two. All of this has helped tremendously in this sadistic waiting room we find ourselves in.
The Verdict:
Invasive Ductal Carcinoma, Grade 3. Probably the ugliest words I've ever heard strung together. I'm certainly not alone in that sentiment. IDC is the most common form of breast cancer, representing up to 85 percent of all BC diagnoses. Unfortunately, a grade 3 tumor is the most aggressive kind -- fast growing, likely to spread and recur. The good news is these high-grade tumors are supposedly very responsive to treatment. And we're digging deep to find some good news. Also, the one lymph node they biopsied came back negative. One negative node…we’ll take it!
Still, we need more good news.
...I want the tumor to be hormone receptor positive as it gives us another treatment option.
...I want to hear, with absolutely certainty, that the cancer hasn't spread. Praying for an early stage! Staging comes next, I think.
Immediate next steps...
The MRI:
The last time I had an MRI, I freaked out, got up on all fours and tried to back out of the machine. My acute claustrophobia, as evidenced in #2 of my "25 Things," will likely pose a problem this Tuesday when I have an MRI on lefty and the neighboring nodes. If they don’t have sedatives on hand, and you happen to be in the Mission Hill area Tuesday, you may see a crazy lady in a hospital johnny and bare feet hauling ass down Huntington Ave.
LA SURGERY:
I want it right now. Today. But "they" (doc, surgeon, oncologist) have assured me that waiting up to a month won’t make much of a difference. Let’s hope so. I had my blood test for the BRAC1 or BRAC2 breast cancer gene on Friday and we (the "theys" and me) decided I should wait for the results of the test before undergoing surgery as it could change my mind on the extent of surgery, etc. This waiting is really the result of what the oncologist called my “impressive family history” of cancer. I've got to say, I found "impressive" a strange choice of adjective. I had visuals of my family members actually trying to excel at cancer; my aunts Flavia and Vinnie in a tete-a-tete, chain smoking and eating maximum-nitrate hot dogs to see who could grow the biggest tumor.
TO KEEP OR TOSS:
Aside: How surreal. One day you're in an agonizing deadlock over whether to keep or toss some pilly sweaters and smelly Uggs. The next, whether to keep or toss tangible body parts.
GENES TO KEEP:
If there is one set of genes that I hope I inherited and can keep, it's my Nana Rie’s (for more reasons than the following, btw). She got BC at age 37. This was the 1940s when it was a death sentence. She died at age 81, in perfect health, after being hit by a car on her way home from her line dancing class. And I'm certain she'd still be here had that jackass not been driving so fast.
So, if we’re dealing in genes. Gimme some of what you got, Nana!
The Verdict:
Invasive Ductal Carcinoma, Grade 3. Probably the ugliest words I've ever heard strung together. I'm certainly not alone in that sentiment. IDC is the most common form of breast cancer, representing up to 85 percent of all BC diagnoses. Unfortunately, a grade 3 tumor is the most aggressive kind -- fast growing, likely to spread and recur. The good news is these high-grade tumors are supposedly very responsive to treatment. And we're digging deep to find some good news. Also, the one lymph node they biopsied came back negative. One negative node…we’ll take it!
Still, we need more good news.
...I want the tumor to be hormone receptor positive as it gives us another treatment option.
...I want to hear, with absolutely certainty, that the cancer hasn't spread. Praying for an early stage! Staging comes next, I think.
Immediate next steps...
The MRI:
The last time I had an MRI, I freaked out, got up on all fours and tried to back out of the machine. My acute claustrophobia, as evidenced in #2 of my "25 Things," will likely pose a problem this Tuesday when I have an MRI on lefty and the neighboring nodes. If they don’t have sedatives on hand, and you happen to be in the Mission Hill area Tuesday, you may see a crazy lady in a hospital johnny and bare feet hauling ass down Huntington Ave.
LA SURGERY:
I want it right now. Today. But "they" (doc, surgeon, oncologist) have assured me that waiting up to a month won’t make much of a difference. Let’s hope so. I had my blood test for the BRAC1 or BRAC2 breast cancer gene on Friday and we (the "theys" and me) decided I should wait for the results of the test before undergoing surgery as it could change my mind on the extent of surgery, etc. This waiting is really the result of what the oncologist called my “impressive family history” of cancer. I've got to say, I found "impressive" a strange choice of adjective. I had visuals of my family members actually trying to excel at cancer; my aunts Flavia and Vinnie in a tete-a-tete, chain smoking and eating maximum-nitrate hot dogs to see who could grow the biggest tumor.
TO KEEP OR TOSS:
Aside: How surreal. One day you're in an agonizing deadlock over whether to keep or toss some pilly sweaters and smelly Uggs. The next, whether to keep or toss tangible body parts.
GENES TO KEEP:
If there is one set of genes that I hope I inherited and can keep, it's my Nana Rie’s (for more reasons than the following, btw). She got BC at age 37. This was the 1940s when it was a death sentence. She died at age 81, in perfect health, after being hit by a car on her way home from her line dancing class. And I'm certain she'd still be here had that jackass not been driving so fast.
So, if we’re dealing in genes. Gimme some of what you got, Nana!
16 January 2009
A Palpable Mass
Pointy note: This is a compilation of eight days worth of posts. I was waiting, with a combo of superstition and hope, for the right time to come out with it all.
Jan. 8
In the waiting room at Boston Ultrasound, I was squinting at my sonogram trying to see what the doctor had seen in the fuzzy black and white fog. From one angle, it looked like a b&w shot of a distant galaxy. From another, like an X-ray of the Grand Canyon. From another…
…I felt like someone was watching me. Sure enough, a woman sitting two seats over was grinning at me. I looked up. She was about my age and had Wellbutrin eyes -- glazed, but kind. She mouthed “congratulations” to me then went back to pretending to read a 2007 issue of Sports Illustrated.
Oh, the irony. I have to admit my darker side came within inches of flashing the sonogram in her face and saying, “Uh, actually, it’s a tumor.”
But I didn’t have the heart to deflate what was clearly a genuine gesture. I easily saw myself from her perspective: A (somewhat) young woman staring at an ultrasound must be in the early stages of zygote elation, not a life-threatening disease.
Indeed, I’ve been to Boston Ultrasound many times. The last time I sat in this waiting room, the doctors dispelled any fear of neural tube defects in Paulie. Today, the doctors pinpointed the sizable lump in my left boob.
I’ve had scares before. I know few women who haven’t. But it’s always turned out to be nothing to worry about. I was fully expecting to hear the same from this ultrasound doctor. Her calm, almost maternal demeanor was instantly reassuring but I knew something was amiss when she began moving the transducer in furious circles on my left one. Suddenly, she became a drill sargeant, barking at me in broken English: How old you?! You have family history?! When you find this?!
Flashback to Dec. 23: When I Find This
Caroline and I were on the couch flipping channels and came across the movie “The Sweetest Thing” with Cameron Diaz and Christina Applegate. If you're familiar with the movie, it was the beginning of the dressing room scene and I thought Caroline would enjoy a little movie montage. In the scene, Cameron Diaz’s character is in a bra, pushing her breasts up to where they were when she was 22 and then them letting them fall to where they are now at age 28. “22, 28, 22, 28.” For whatever reason, Caroline found this hysterical so I mimicked it.
Then felt a rock!
Aside: This strangely recalled the “Do you have a hummel in your bra” moment circa 1996 in NYC.
I decided I’d have it looked at after new year's because, you know, mammograms around the holidays. Meh.
Aside II: I’m now convinced that Christina Applegate, who had a double mastectomy at age 36, has had all of her movies re-edited with subliminal reminders to women to perform SBEs (self breast exams).
Jan. 6: Doctor's Office
My doctor feels me up and says, very soberly: “There is a palapable mass.”
“WHAT!”
I was like a cat hitting the ceiling. I think I jumped out of my body and hid behind the chair. What kind of scary terminology is that? Palpable mass.
Jan. 8: Back at Boston Ultrasound
The ultrasound doc finally concludes her examination of lefty and we have the following exchange:
DR. “This is solid mass. You need to have follow-up test immediately.”
Me: "You know, I really wish people would refrain from using the term 'mass.' It’s very unsettling."
Dr. “Well, it’s tumor.”
I think we can all agree that "mass" is the better of the two nouns.
Jan. 13, Mammogram: Google, MD
I was gawking at the mammogram results with my doctor. I sat back in my chair pointing (Never in my life have I desired a laser pointer more) to some tiny bright dots on the films. “Are those pleomorphic calcifications in the upper left quadrant? I can see they’re in a cluster, but are they also linear?”
My doctor, head in hands, promptly implored me to stay off the Internet, but not before admitting that they were indeed linear. Then insisting that it doesn't necessary translate into doom.
The only way I could stay offline was if I were sequestered in total sedation. While I will be tested for the breast cancer gene this week, I already know I have the journalism gene because the only (only!) way I can deal with a crisis is to gather as much information as possible. Thus, I've been dubbed "Google, MD."
From the Internets, I already have a full notebook of notes. I’ve ordered $200+ worth of immune system-boosting supplements. (Dr. Nic has already staged a B-vitamin intervention with some of said supplements and ordered a cease and desist until she thoroughly investigates for interactions.)
Drop and Roll
The past week and a half has had many “Drop and roll” moments (with apologies to PM)
When your doctor calls you at 11 p.m. offering unsolicited sedatives. Drop and roll.
When another doctor calls your mammogram “very worrisome.” Drop and roll.
When your surgeon tells you to prepare for cancer. Drop and roll.
Of course, I may be reading in to my own fears and anxieties.
Stages of Disbelief
Of denial: Obscure emails to my doctor: Seriously? Really? Could it be…really?
Of misdirected anger: I am the healthiest I've ever been in my life! I just had a full physical six months ago! Why have I been eating all these leafy greens and drinking all this green tea all these years?! All that fucking beta carotene! Why the I hell did I quit smoking?! This is complete bullshit!
Of message board science: Is it the result of estrogen dominance from an ill-fated tango with the Mirena IUD?
Is it bad luck? Family history?
Jan. 8
In the waiting room at Boston Ultrasound, I was squinting at my sonogram trying to see what the doctor had seen in the fuzzy black and white fog. From one angle, it looked like a b&w shot of a distant galaxy. From another, like an X-ray of the Grand Canyon. From another…
…I felt like someone was watching me. Sure enough, a woman sitting two seats over was grinning at me. I looked up. She was about my age and had Wellbutrin eyes -- glazed, but kind. She mouthed “congratulations” to me then went back to pretending to read a 2007 issue of Sports Illustrated.
Oh, the irony. I have to admit my darker side came within inches of flashing the sonogram in her face and saying, “Uh, actually, it’s a tumor.”
But I didn’t have the heart to deflate what was clearly a genuine gesture. I easily saw myself from her perspective: A (somewhat) young woman staring at an ultrasound must be in the early stages of zygote elation, not a life-threatening disease.
Indeed, I’ve been to Boston Ultrasound many times. The last time I sat in this waiting room, the doctors dispelled any fear of neural tube defects in Paulie. Today, the doctors pinpointed the sizable lump in my left boob.
I’ve had scares before. I know few women who haven’t. But it’s always turned out to be nothing to worry about. I was fully expecting to hear the same from this ultrasound doctor. Her calm, almost maternal demeanor was instantly reassuring but I knew something was amiss when she began moving the transducer in furious circles on my left one. Suddenly, she became a drill sargeant, barking at me in broken English: How old you?! You have family history?! When you find this?!
Flashback to Dec. 23: When I Find This
Caroline and I were on the couch flipping channels and came across the movie “The Sweetest Thing” with Cameron Diaz and Christina Applegate. If you're familiar with the movie, it was the beginning of the dressing room scene and I thought Caroline would enjoy a little movie montage. In the scene, Cameron Diaz’s character is in a bra, pushing her breasts up to where they were when she was 22 and then them letting them fall to where they are now at age 28. “22, 28, 22, 28.” For whatever reason, Caroline found this hysterical so I mimicked it.
Then felt a rock!
Aside: This strangely recalled the “Do you have a hummel in your bra” moment circa 1996 in NYC.
I decided I’d have it looked at after new year's because, you know, mammograms around the holidays. Meh.
Aside II: I’m now convinced that Christina Applegate, who had a double mastectomy at age 36, has had all of her movies re-edited with subliminal reminders to women to perform SBEs (self breast exams).
Jan. 6: Doctor's Office
My doctor feels me up and says, very soberly: “There is a palapable mass.”
“WHAT!”
I was like a cat hitting the ceiling. I think I jumped out of my body and hid behind the chair. What kind of scary terminology is that? Palpable mass.
Jan. 8: Back at Boston Ultrasound
The ultrasound doc finally concludes her examination of lefty and we have the following exchange:
DR. “This is solid mass. You need to have follow-up test immediately.”
Me: "You know, I really wish people would refrain from using the term 'mass.' It’s very unsettling."
Dr. “Well, it’s tumor.”
I think we can all agree that "mass" is the better of the two nouns.
Jan. 13, Mammogram: Google, MD
I was gawking at the mammogram results with my doctor. I sat back in my chair pointing (Never in my life have I desired a laser pointer more) to some tiny bright dots on the films. “Are those pleomorphic calcifications in the upper left quadrant? I can see they’re in a cluster, but are they also linear?”
My doctor, head in hands, promptly implored me to stay off the Internet, but not before admitting that they were indeed linear. Then insisting that it doesn't necessary translate into doom.
The only way I could stay offline was if I were sequestered in total sedation. While I will be tested for the breast cancer gene this week, I already know I have the journalism gene because the only (only!) way I can deal with a crisis is to gather as much information as possible. Thus, I've been dubbed "Google, MD."
From the Internets, I already have a full notebook of notes. I’ve ordered $200+ worth of immune system-boosting supplements. (Dr. Nic has already staged a B-vitamin intervention with some of said supplements and ordered a cease and desist until she thoroughly investigates for interactions.)
Drop and Roll
The past week and a half has had many “Drop and roll” moments (with apologies to PM)
When your doctor calls you at 11 p.m. offering unsolicited sedatives. Drop and roll.
When another doctor calls your mammogram “very worrisome.” Drop and roll.
When your surgeon tells you to prepare for cancer. Drop and roll.
Of course, I may be reading in to my own fears and anxieties.
Stages of Disbelief
Of denial: Obscure emails to my doctor: Seriously? Really? Could it be…really?
Of misdirected anger: I am the healthiest I've ever been in my life! I just had a full physical six months ago! Why have I been eating all these leafy greens and drinking all this green tea all these years?! All that fucking beta carotene! Why the I hell did I quit smoking?! This is complete bullshit!
Of message board science: Is it the result of estrogen dominance from an ill-fated tango with the Mirena IUD?
Is it bad luck? Family history?
Karma for my sins?
I unraveled into this semi-coherent rant as Code Red and I were driving home from a yoga workshop last weekend. As we were going over the Zakim Bridge, CR said:
“Sometimes if you’re going to get something, you’re just going to get something.”
Then all was quiet except for the strangely soothing sound of the bridge cables humming past either side of the car. It was the most Zen moment/sentence I’d heard all week. Code Red is like that sometimes.
Jan. 14: Good Health Store
My favorite tattooed, pierced sales associate is carrying my basket for me while I dump all kinds of medicinal teas into it. He's talking to me about gluten-free waffles. My phone rings and I excuse myself and head into the parking lot.
It's my sister-in-law returning my call. Most know she's been battling ovarian cancer for more than a year now, and just recently, her husband, my brother-in-law, was diagnosed with throat cancer. So they had family fun time over the holidays going through chemo and radiation as a team. In short, they are going through something SO worse. My sister-in-law is a self-contained arsenal of information and positive energy and a take-no-prisoners approach to healing. In talking to me from her place of wisdom, from having been there, done that, she talked me into a better place.
All you really need to know:
Stay in the present at all times.
The waiting really is the hardest part. Not knowing is torture.
You will get through the dark times with the support of family and friends
(and perhaps that wee baggie of Xanax.)
Onward
All this and I still haven’t received the biopsy results! If it's cancer, we’ll deal, if it’s not, we’ll party.
If it is, here’s hoping it hasn’t spread beyond the teeeeet!
I unraveled into this semi-coherent rant as Code Red and I were driving home from a yoga workshop last weekend. As we were going over the Zakim Bridge, CR said:
“Sometimes if you’re going to get something, you’re just going to get something.”
Then all was quiet except for the strangely soothing sound of the bridge cables humming past either side of the car. It was the most Zen moment/sentence I’d heard all week. Code Red is like that sometimes.
Jan. 14: Good Health Store
My favorite tattooed, pierced sales associate is carrying my basket for me while I dump all kinds of medicinal teas into it. He's talking to me about gluten-free waffles. My phone rings and I excuse myself and head into the parking lot.
It's my sister-in-law returning my call. Most know she's been battling ovarian cancer for more than a year now, and just recently, her husband, my brother-in-law, was diagnosed with throat cancer. So they had family fun time over the holidays going through chemo and radiation as a team. In short, they are going through something SO worse. My sister-in-law is a self-contained arsenal of information and positive energy and a take-no-prisoners approach to healing. In talking to me from her place of wisdom, from having been there, done that, she talked me into a better place.
All you really need to know:
Stay in the present at all times.
The waiting really is the hardest part. Not knowing is torture.
You will get through the dark times with the support of family and friends
(and perhaps that wee baggie of Xanax.)
Onward
All this and I still haven’t received the biopsy results! If it's cancer, we’ll deal, if it’s not, we’ll party.
If it is, here’s hoping it hasn’t spread beyond the teeeeet!
05 January 2009
25 Things
Happy 2009 to all! We did DIY Chinese food on New Year's Eve and it came out smashingly (or at least it was better than getting booted out of the Ritz.) Still, everyone was passed out by 10 so I rang in the new year trolling the Internets with a glass of prosecco. Like any other night. I noticed a trend popping up on some blogs called “25 things.” Posters were sharing 25 random truths or philosophies about themselves, mostly useless nuggets of information that are either little known or just south of strange. I thought it’d be a fun, albeit gratuitious exercise and I hope others will share in the comment section. Here are mine:
1. I spend most of my days screeching into and out of parking lots because even though I’m totally disorganized, I pride myself on being on time. “Punctuality is the courtesy of kings.”
2. I’m extremely claustrophobic. Wicked. I don’t even like wearing socks.
3. I’ve learned it’s just way easier to give Vito a sponge bath than a traditional tub.
4. I’ve contrived an elaborate survival plan for the coming apocalypse.
5. When I was six years old, I had a laundry basket tied off on the floor at the end of my bed. I called it my “dinghy” and used to sit in it and eat Oreos.
6. When I was in 2nd grade, my friend Danielle’s mother would call my mother every morning to ask if I was wearing socks or tights to school that day. It was only recently that I realized how strange that was.
7. I have freakishly long arms and huge feet for a 5’3” woman.
8. I don’t like cheese, except on pizza. And in a limited number of ricotta-stuffed pastas.
9. I love Nostradamus and all of his doomy quatrains. Armageddon Week on the History Channel. Shark Week on Discovery. And NatGeo’s “Seconds from Disaster.” I despise reality shows and famewhores. I miss going to the movies and especially walking to the Kendall from Charlestown with James on Saturdays.
10. For everything, everything, everything, everything!
11. Paul Westerberg once told me I smelled “really nice” in the parking lot of the Somerville Theatre and I almost fainted.
12. I’m a horrible driver.
13. I can play the piano poorly
14. I’ve seen U2 somewhere between 28-32 times.
15. I’m still bitter that Trish McEvoy #11 eau de parfum was discontinued (see #9).
16. I wish Death Cab for Cutie were not toddlers when I was in college. Their music would’ve provided some major catharsis for us ladies of the day.
17. I’m dying to go on a storm chasing vacation to tornado alley.
18. I feel helpless about my loved ones (and friends of loved ones) who are going through some terrible times right now.
19. My kids don’t flush the toilet, but they do swear often.
20. I’m not as easily impressed as you think I am. I’m usually just being nice.
21. I’m way too nice. I want to be less nice and more kind. There is a huge difference.
22. I love arguing but loathe confrontation.
23. Shabu Shabu anyone?
24. I don’t miss smoking as much as the camaraderie of it (Dreama)
25. Note to Tracy O: The next time we have a high school reunion, let’s go sledding with vodka instead.
1. I spend most of my days screeching into and out of parking lots because even though I’m totally disorganized, I pride myself on being on time. “Punctuality is the courtesy of kings.”
2. I’m extremely claustrophobic. Wicked. I don’t even like wearing socks.
3. I’ve learned it’s just way easier to give Vito a sponge bath than a traditional tub.
4. I’ve contrived an elaborate survival plan for the coming apocalypse.
5. When I was six years old, I had a laundry basket tied off on the floor at the end of my bed. I called it my “dinghy” and used to sit in it and eat Oreos.
6. When I was in 2nd grade, my friend Danielle’s mother would call my mother every morning to ask if I was wearing socks or tights to school that day. It was only recently that I realized how strange that was.
7. I have freakishly long arms and huge feet for a 5’3” woman.
8. I don’t like cheese, except on pizza. And in a limited number of ricotta-stuffed pastas.
9. I love Nostradamus and all of his doomy quatrains. Armageddon Week on the History Channel. Shark Week on Discovery. And NatGeo’s “Seconds from Disaster.” I despise reality shows and famewhores. I miss going to the movies and especially walking to the Kendall from Charlestown with James on Saturdays.
10. For everything, everything, everything, everything!
11. Paul Westerberg once told me I smelled “really nice” in the parking lot of the Somerville Theatre and I almost fainted.
12. I’m a horrible driver.
13. I can play the piano poorly
14. I’ve seen U2 somewhere between 28-32 times.
15. I’m still bitter that Trish McEvoy #11 eau de parfum was discontinued (see #9).
16. I wish Death Cab for Cutie were not toddlers when I was in college. Their music would’ve provided some major catharsis for us ladies of the day.
17. I’m dying to go on a storm chasing vacation to tornado alley.
18. I feel helpless about my loved ones (and friends of loved ones) who are going through some terrible times right now.
19. My kids don’t flush the toilet, but they do swear often.
20. I’m not as easily impressed as you think I am. I’m usually just being nice.
21. I’m way too nice. I want to be less nice and more kind. There is a huge difference.
22. I love arguing but loathe confrontation.
23. Shabu Shabu anyone?
24. I don’t miss smoking as much as the camaraderie of it (Dreama)
25. Note to Tracy O: The next time we have a high school reunion, let’s go sledding with vodka instead.
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