Superman

Standing self-consciously in the hallway outside the MRI room, I start to question my vow to wear fabulous shoes to my appointments. Although they do inject some glamour into the whole ordeal, my new leopard print pumps with the gold buckles and gold heels look slightly ridiculous with my blue knee-length hospital gown.

The technician opens the door. “Just leave the shoes over there,” he says, pointing to a space in front of a rolling cart laden with syringes and sterile pads. I do, and step gingerly over to the giant metal tube I am about to enter. Climbing up onto the table, I regret that I did not wear socks as I realize that for the fifteenth day in a row, I have not managed to get that pedicure I keep promising myself. As the phlebotomist fumbles while replacing the needle in my arm with the IV, I really start to question the shoe decision. Fortunately, they are a safe distance away from the spurting, which is quickly contained.

IV in place, the technician instructs me to lie on my stomach on the table, face turned to the side, arms out in front of me “like Superman.” Sure, if Superman’s breasts had to hang into two side-by-side plastic boxes. At least the blue gown does feel a bit like a cape, secure over my shoulders and draped across my back.

Slowly, the machine feeds me into the tube, feet first. My head is just inside the mouth – I can see out, but choose to keep my eyes shut. Safely on the other side of the closed door, the technician comes on over the loudspeaker to warn me to stay still and expect a loud noise.

When I talked to Michael about the MRI, he said the one he had for his deviated septum was no big deal: “It was actually sort of relaxing – I even got to have a little nap.” As mine begins, I want to laugh out loud, but fear this would violate the “stay still” instructions and I would have to do it over again.

A noise like the most horrendous post-modern electronic one-note symphony starts, speakers turned to 11, and doesn’t stop for 40 minutes. BEEPBEEPBEEPBEEPBEEPOKOKOKOKOKOKOKOKOKOKOKOKOKOK
DUMDEDUMDEDUMDEDUMDEDUMWONKAWONKAWONKAWONKA
I distract myself by trying to identify the different patterns in a sort of Twilight Zone “Name That Tune,” and am grateful for the earplugs the technician gave me.

When it’s over, my ears are ringing and I can already see the bruise from the IV. But the next day, the news is good. The only visible tumor is the one we already knew about. There are no signs that the cancer has spread anywhere else, including the lymph nodes. Although we will not be certain about this until after my sentinel nodes are removed and tested, it is a very positive sign.

And as I enter the dressing room to change out of my gown, I am glad about the shoes. Like Superman in the phone booth, returning to the comfort and predictability of being Clark Kent, I am ready to slip back into my “normal life” for a few hours. I leave the building and head off to meet Sarah to check out the (quite interesting) Ecotopia exhibit at the International Center of Photography. As I walk through midtown, I catch sight of my shoes in the reflective glass of an office building -- my small act of sartorial defiance lightens my mood, and reminds me of who I really am.

Birthday Gift

My mother tells the story that when I was 15 and my brother Matt was 9, she came up the stairs to find him sitting on the floor in the hallway with our cat in his lap. He was using a hairbrush on her fur, to her purring delight.

"Matt! You shouldn't use your brush on the cat!" Mom admonished.

"It's not my hairbrush," he said, smiling serenely while continuing to stroke the cat. "It's Courtney's."

My brother and I had our share of knock-down drag-out fights as kids. As a toddler, he would take hold of giant fistfuls of my hair and pull as hard as he could. He teased me about the ill-advised perm I received at the age of 13. I retaliated by making fun of him when he had to shave his head for the swim team in high school, and took perverse delight in pointing out that it never grew back quite the same.

But now I am glad for his head- shaving expertise (although he later grew a ponytail in high school, he has been shaving it on and off since college). With all of you as my witnesses, I am giving Matt the gift I think he secretly always wanted as a kid for his birthday (albeit one day late):

When it comes time, about three weeks into my chemotherapy, Matt, you get an all-expenses paid trip to New York to shave my head. I'll even let you take pictures. Happy birthday to my big-hearted, bald-headed baby brother.

Eggplant

Last Wednesday, I had a core needle biopsy and a bilateral ultrasound – the full breast on both sides and not just the lump this time. The radiologist’s assistant was the same woman who examined me a couple weeks ago - I recognized her by her hat. I have been paying a lot of attention to hats this week. The hair that sticks out beneath her floppy hat (am I imaging the flower?) looks like her own – maybe she wears a hat to show solidarity with the women she is imaging? Perhaps she doesn’t have time to blowdry? Surely it’s not just a kooky Punky Brewster affectation? Is this what people will think of me when they see me out to dinner in a hat a few months from now? At least it will be winter when I go through chemo – maybe I will be cut some slack.

She explains the procedure to me: “First we will take an ultrasound of both breasts, then the radiologist will come in to take some tissue samples.” It is my third ultrasound in three weeks – other than being a little ticklish when she runs the device (which looks like the ID scanner at my gym) over the outer sides of my breasts, it is no big deal. She even turns the screen toward me so I can see – always the student, and it beats looking at the ceiling.

Someone once told me that radiology as a specialty attracts the misanthropes - all slides, no sympathy (note to my friends in med school: I don’t mean you!) At first, this radiologist seemed to fit the mold. Lots of questions and instructions for the assistant: “Did you check the nodes? When you work with me, always check the nodes. Is the clip ready? No, I need the other kind. Where are my steristrips?”

She runs the scanner all around my left armpit, and the black and white images that appear on the screen seem to relax her. Maybe it helps that I am paying attention and looking at the screen as well: “It’s good if it looks like a horseshoe. See the white bit in the middle? That is what a normal lymph node should look like.” The news seems good. “I can only say that morphologically, things look fine. The nodes do still need to be tested microscopically.” Still, this sounds better than “You are a walking tumorous timebomb,” so I will take what I can get.

Next, she preps me for the biopsy: “You will hear a loud noise like a staple gun. But we use a numbing agent, so you won’t feel pain, just pressure.” Kindly, she suggests I may want to close my eyes while she makes a small incision for the needle. I watch on the screen as the probe finds its way to the tumor. “Loud noise,” warns the assistant. POP. I manage not to jump – the warning helps.

This happens three more times. The only disconcerting part is that two of the four times, I feel a slight splash of liquid on my chest and face when the tissue sampling occurs. The second time, I mention it in response to their standard “How you doin’?” query: “Okay, but…umm…I just felt something squirting on me. Maybe that’s normal?” Again, trying to be blasé while lying flat on my back on a table. I may need to get over that. They reassure me they see nothing. Later, as I wipe the minute bloodspots off my face in the bathroom mirror, I rationalize that perhaps they just thought I had freckles.

At the surgeon’s suggestion, the radiologist also inserts a titanium clip into the center of the lump, since sometimes tumors respond to neo-adjuvant chemotherapy by disappearing entirely. Unfortunately, this does not mean that surgery can be avoided. They still need to remove some tissue for tests and to ensure the areas around the tumor are clear. The clip ensures that they can pinpoint the tumor’s location in the event that it disappears.

I reveal that I have taken Advil in the past 7 days (after all, I was out dancing in a bar on Friday. And I thought I was in the clear!) “You can expect to see some bruising,” the radiologist warns. “That left breast could look like an eggplant in the next day or two.”

“Well, that should make for a great anniversary weekend,” I say weakly. “I guess I can just wear a nice bra.”

Suddenly, the doctor remembers she is human. “How long have you been married?”

And I can’t shut up. “Six years, but we’ve known each other for thirteen. Our anniversary is on Saturday October 21 – the same day my grandparents got married. We met in London – he’s English. I studied over there. We are going away for the weekend – I know that we are driving, so it must be somewhere cold, so at least I won’t need to wear a bikini or anything like that. Michael planned it as a surprise for me, before all this happened…”

Her hand is on my shoulder as the assistant finishes taping up the gauze. “Sweetie, you are going to be fine. You are young and strong. It’s not going to be easy, but the hard part will be over soon. Relax and enjoy your weekend.” I look into her eyes as she gives my shoulder a squeeze, and I believe her.

We did have a fantastic weekend – Michael planned a lovely getaway to Wheatleigh in Lenox, MA. We hiked, meandered around the little New England towns, relaxed in the gorgeous hotel, admired the changing leaves, and celebrated our sixth anniversary over a delicious truffle-infused dinner with our friends, Ursula and Enore.

And luckily, the doctor was wrong about the effect of the biopsy. It’s a slightly lurid yellow-green bruise, roughly the same diameter as the tumor. More like a hickey than an eggplant. Although we are far too grown up for such things, it does somehow seem appropriate as a visible reminder of a fabulous anniversary weekend.

Initial Diagnosis and Treatment Plan

The facts and more detail than you would probably ever want to know

Michael and I went to see Dr. Rosenbaum Smith the same afternoon she gave me the diagnosis (thanks to Michael’s cooler head prevailing and insisting that I not stay and try to work, but rather go figure out what we had to do next). I do not yet know which “stage” I am in – until a few more tests are performed, it is difficult to tell. I have had several of the tests already, and should know more sometime around October 25. These test results will influence my treatment.

Already, I do know that my tumor is 2.7cm long. At that size, and at my age (33), aggressive chemotherapy is strongly advised. And because of the size and location of the tumor, my doctor has recommended “neo-adjuvant” chemotherapy, which means chemotherapy before rather than after surgery. The benefit is that this may shrink the lump to a size that could be more easily removed in a lumpectomy rather than a mastectomy. Because of its current size and location, removing the tumor as is would disfigure the breast.

I spent the week on a whirlwind tour of doctors’ offices. After my initial meeting with Dr. Rosenbaum Smith (the breast surgeon) on Monday afternoon, I went for a mammogram (my first) on Tuesday. This test looks for other signs of tumors; fortunately, none were found. However, this does not mean they are not there, so on Wednesday I went for a full ultrasound of both breasts (the earlier ultrasound had been only of the tumor). This also looked at my lymph nodes, which, at least in the initial imaging, look normal. The third imaging test used in conjunction with the mammogram and ultrasound is an MRI, which I will have on Wednesday October 25. All of these taken together will give the doctors a clearer picture of the tumor and the health of both my breasts.

At the same time I had the ultrasound, I also had a core needle biopsy. This removes pieces of the tumor tissue for testing – I will receive the results later this week. This test looks for the tumor’s hormone receptivity and the presence of a protein called HER2/neu, both of which will influence my overall treatment.

Since I am already fairly certain I want to pursue the chemotherapy before the surgery, I opted to have a titanium clip inserted into the tumor at the same time as the radiologist conducted the biopsy. This is because the lump may shrink dramatically during chemotherapy – in some cases, it disappears altogether. But even if this happens, the surrounding tissue must still be removed and tested, so the clip allows the surgeon to locate the original center of the tumor no matter what develops during other treatment.

I will also have to have a lymph node test to see if the cancer has spread beyond the tumor. From the imaging tests so far, it looks like the news will be good - the cancer appears to be confined to the tumor. But only removal and examination under a microscope will be able to determine this for sure. So in the next week or two, my breast surgeon will conduct a "sentinel lymph node" test, which allows her to remove and examine only the three or four lymph nodes that have the primary duty of filtering the fluid that drains from the breast. If any nodes show signs of cancer, it would start in these. This is an in-office surgery under local anaesthetic and sounds like a fairly minor (albeit important) operation.

Even the breast surgery itself is not overly worrying – as my doctor assured me in my first meeting, and the plastic surgeon reassured me when I met with him on Friday, even if for some reason I have to have a double mastectomy, they can perform reconstruction then and there, and I will wake up with the old breasts gone and new (perkier!) breasts in their place. But the chemotherapy is frightening. Given the course of medicine they recommend in my case, I will almost certainly lose my hair. I may lose eyebrows and eyelashes too, along with body hair. Although they actively work to prevent the nausea that often accompanies chemo with other drugs, I will undoubtedly be more fatigued, a situation many people compare to having mild flu…for a couple of months. Most alarmingly, chemo can have a negative effect on fertility.

Understandably, I was a little apprehensive when Michael and I met the oncologist on Wednesday afternoon to discuss the chemotherapy. But he was very reassuring. I will go in for treatment once every two weeks over probably 16 weeks (possibly 20, depending on the full diagnosis). The nausea sounds fairly straightforward to control. Most of his working patients come in on Friday mornings, so time off work is limited to about 8 days over the course of the treatment. Even the fertility issue can be helped by a drug given in conjunction with the chemo that stimulates early menopause. Although trials are limited, they suggest that premenopausal women who take this drug before chemo “protect” their ovaries and egg supply during the brief period when the treatment is administered, making it more likely that they will return to menstruation and ovulation post-treatment.

As an insurance plan, we are also pursuing in-vitro fertilization with Dr. Oktay at the Cornell Weill center in New York, who specializes in fertility preservation for young women with cancer. Normal estrogen-based ovarian stimulation (as well as normal pregnancy) can be dangerous for cancer patients, since estrogen can trigger tumor growth. Instead, in about 8-10 days, depending on my cycle, I will start taking Femara (Letrozole), a non-hormonal cancer drug that also has the effect of stimulating the ovaries to produce more eggs. The doctors will harvest the eggs and fertilize them with my husband’s sperm, then freeze the embryos so we can implant them later if needed.

Statistics around infertility and cancer are cloudy. My understanding is that I do have roughly a 30% chance of never having another period after chemotherapy, but that does not mean I have a 70% chance of getting pregnant naturally. Even if everything does return to normal after the chemotherapy, pregnancy may be delayed because of ongoing treatments. Thus pre-chemo IVF seems like a wise step, since we know we want to be parents as soon as we can after getting through all of this.

I have also met with a genetic counselor and performed a test for two genetic abnormalities in genes known as BRCA1 and BRCA2. Since I am unusually young to be diagnosed with breast cancer (.5% risk for women under 40, vs. 4% for women ages 40-59, and 7% for women ages 60-79), the presence of abnormalities in “the breast cancer genes” may explain why I now have the disease. However, these genes are only present in about 10% of breast cancer patients. Women with these abnormalities have as much as an 85% lifetime risk of developing breast cancer, and if I have them, the chance of developing cancer in my other breast is greatly increased. There is also an associated heightened risk for ovarian cancer. If I do test positive for either of these genes, I will need to consider prophylactic surgery (i.e., a double mastectomy).

So when does this all start? This week I will learn more about my test results, and will also speak with a few more doctors to get other opinions on the best course of action. The IVF treatment is time sensitive and is the first priority – it looks like that will begin this coming weekend or early next week, which means that chemo would begin in mid-November, ending in late February, with surgery in early March.

I will do my best to keep this site current with diagnosis, treatment and progress, and apologize in advance if I end up “oversharing,” as I am sure I have already done in the eyes of many, or at least one. Sorry Mom…

Why am I writing this? Because...

• There are so many people I love who live in so many far-flung places, and I want to make sure they can always hear from me, even if I don’t always have the time or energy to talk to them directly.
• In the wee hours of the morning the day after my diagnosis, reading stories on the Internet of people in the same situation, particularly other young women, provided me with knowledge and comfort.
• When I started making a list of everyone I wanted to get in touch with to let them know what was happening, it grew to over 100 names without me having to stop to think twice.
• Although I am not yet tired of explaining “how I found out and what is next” to my friends, I know I might be at some point.
• When I see you on the street this spring, I don’t want to have to explain why I decided to cut my hair. And I don’t want you to have to feel bad you asked when I tell you the reason.
• When you see me out to dinner in New York this winter in a short red or a long black wig (both will be pulled from the costume box I have had since performing in Follies at business school, so watch for it!) I may not want to have to explain why.
• When we next see each other in person, I would rather cut straight to the hug than have the awkward conversation.
• This is one of those “live life without regrets” wake-up calls you never want to receive, but when you do it inspires you. And one of my regrets has been that I no longer make time to write, so now I will. Hopefully not just about cancer, but I imagine that for the near term that may be what fills many of the posts. But I promise to try to write about what makes me happy too.
  
• I have fallen out of touch with people who have been an important part of my life, and I want them back in it.
• I read a statistic (that I am too lazy to look up now) about how women who write about their breast cancer have a better time dealing with it. And I believe it.
• There is a quote from an old Calvin & Hobbes cartoon (how erudite! wouldn’t Professor Finkelpearl in the English department be proud!) that I remember, something like “Nothing helps a bad mood like spreading it around.” In a much less negative way, that’s what I am doing.
• All my instincts tell me to talk about this with people. To make myself feel better, to raise awareness, to perhaps find out some piece of information that will help me or someone else.
• Work will help keep me busy, but sometimes I may need to do something to take my mind off my situation that is not completely divorced from it. This can be that outlet.
• I want to give people who might feel awkward about calling me, because it’s been a long time since we have talked or because we are not “that close” or just because you think I might be too busy or tired to talk (which I may be) a way to get in touch with me or to just be able to know how things are going.
• There are a lot of thoughts whirling in my head, especially late at night and early in the morning. Writing them down may help me calm down. And I flatter myself that you may find some of them informative, touching or (hopefully) amusing.
• Sharing my diagnosis over the last few days has led to my friends and family offering wisdom, compassion, strength and love, all of which I will need in giant doses in the coming months.
  

The story so far: How I found out

On September 17, 2006, I felt a lump on my left breast while I was taking a shower. It was big enough to feel pretty easily (I was not doing a breast self exam) and a little tender. I called my gynecologist to make an appointment, and saw her that Thursday, September 21. She was not overly concerned, but advised that I get a breast ultrasound. She said that if it was liquid-filled, it could be drained then and there. Otherwise, they might need to take a biopsy.

I had my ultrasound on Wednesday, September 27. The radiologist said that since it was palpable (to which my inner response was “yeah, no kidding, I felt it ten days ago”), he advised a fine needle biopsy (done with a little needle with no ultrasound guidance required) rather than a core biopsy (bigger needle, requires local numbing agent, ultrasound guided). I called my gynecologist and asked if I should schedule the biopsy at the same facility, but she advised that I meet with a woman she recommended who is the head of the Breast Center at St Luke’s-Roosevelt, just in case.

I could not get an appointment for the week of October 2 and traveled to Los Angeles with Michael for the weekend of October 7 to meet his brother Stuart and Stuart’s girlfriend Anna, and then went straight from there to Las Vegas for work for a couple of days. So the first appointment I could get was Friday October 13. Fortunately (unfortunately?), I am not superstitious.

Friday, I had meetings in the morning and afternoon, and left work around 3 to go meet Dr. Rosenbaum Smith at St Luke’s-Roosevelt. After an exam, she took a fine needle biopsy, and also did an ultrasound. At the time, she assured me the lump looked like a normal fibroadenoma, nothing to be concerned about, and probably would not need to be removed unless it grew beyond its current 2.7 cm size. She said she would call with the biopsy results on Monday, and we set up a follow-up appointment to check on its size in December.

Michael and I spent a lovely weekend feeling very relaxed, reassuring my parents and the few close friends I had told about the lump that it looked like I was going to be fine. We met friends out for drinks on Friday to celebrate my friend Sorrel’s visit to New York from Cleveland and her upcoming move back to London. We took endless goofy photos and danced on the banquettes at the bar. Saturday night we cooked for our friends Greg and Sophia. Sunday was spent eating blueberry pancakes and reading The New York Times with Sorrel and another friend, Karin, in New York for a brief visit before heading back to her UN posting in Sudan.

I went to work Monday feeling renewed and ready to take on the challenges of a couple of different projects now that the scare was behind me. Until I received the phone call around 2:30 that afternoon from my doctor: “I’m calling to tell you that your test came back positive for cancer.”