Harvard

I started on a path to the Ivy League back in junior high. Now that I live in nutso neurotic New York, where otherwise reasonable parents pay consultants to coach their pre-schoolers to ace their entrance interviews, this does not seem that hard to fathom. But in Des Moines, Iowa, in 1986, it was fairly avant garde.

My mother had read somewhere that you needed a wide variety of extracurricular activities to make the cut. I already played the violin and loved writing for the school paper, so those were easy. A couple of weeks each summer at camp when I was 11 and 12 got me ready for the swim team. French classes plus a mini-internship in St. Etienne (the only useful application of a "Sister City" that I know of to date!) added international flavor.

By the time I applied for college, my knowledge of SAT averages and essay weighting in admissions decisions at various institutions of higher education was encyclopedic. To the credit of my parents and myself, I did not apply to every top-ranked school willy nilly. I sought out those schools that had outstanding English and Political Science programs, encouraged study abroad, and had low student:teacher ratios. Less nobly, I leaned toward schools that did not have rigorous math or science requirements.

I also looked for schools that had the ineffable quality of "feeling right." Could I see myself in these classes, learning from these professors, socializing with these students? Could I visualize myself walking these paths, living in these dorms, eating this food?

The obligatory "decision trip" came in March. Somewhat to my surprise, since I had never really intended to attend a women's college, Wellesley was my clear favorite of the schools to which I had been admitted. But note the qualifier - I was holding out hope for Harvard, where I had been waitlisted.

April was a difficult month. I agonized over whether to keep my name on the list, waiting to see if someone chose not to come to Cambridge after all. I wanted the halo, the sheen, the gold-plated rubber stamp of the Harvard diploma.

But deeper below the surface, I suspected there was something about Wellesley that was better for me. Whether it was that it is purely an undergraduate college, the fact that the captain of the swim team, editor of the newspaper, president of the student goverment and anyone else a first year student might look up to was a female role model, or simply that the campus is so beautiful they can charge locals membership fees to use its facilities as a "country club," I am still not sure. But my instincts told me it was the right decision. I took my name off Harvard's waiting list and sent in my deposit to Wellesley.

Living in New York with good health insurance and cancer, everyone assumes you are being treated at Sloan Kettering. Why wouldn't you? It's the best in the world, attracts leading doctors, participates in all the cutting edge trials, and has an international reputation.

After pulling a few corporate strings (again, welcome to New York!) I was able to get in easily for a second opinion immediately after my diagnosis. I had no issue with the doctors or nurses there. I can recognize the benefits the hospital offers. I can certainly understand why it is the right choice for so many people. And they do have lovely pinstriped hospital gowns.

But I don't think it's the right choice for me. Shallowly, it is a pain for me to get to - I know that complaining about convenience in a city the physical size of New York may sound ridiculous, especially to people who drive a couple of hours each way for their chemo treatments. But after living on the Upper West Side for a few years, the idea of traveling to York Avenue every other Friday sounds about as convenient as hopping a biweekly flight to Des Moines.

Much more importantly, it just doesn't feel as right. A woman I spoke to described part of what may be at the root of this emotion: "I know it sounds weird, but everyone you see at Sloan Kettering just seems so sick." My doctor told me that they provide excellent care and that I would certainly be in good hands there, but that the reason people seek out Sloan Kettering "is for the complicated, the severe, or the rare." So far, it appears that I fall into none of these categories.

I continue to get a few more opinions, but for the moment sticking with my original doctors at St. Luke's-Roosevelt and the path they have set me on feels like the right direction. Although I may be missing my chance to go to the Harvard of cancer hospitals, my gut has been right before - almost 16 years later, I still maintain that choosing Wellesley was the best decision I ever made. I can only hope I will be able to say the same thing about this decision, 6, 16 and 36 years from now.

Inheritance

My father used to joke that the strong resemblance between the women in our family hints that men had no involvement in our creation. When I was eight or nine, there were four generations of women still alive - my great grandmother was a redhead before her hair turned grey, my grandmother kept her black hair for most of her 78 years, my mother was a brunette until a recent decision to lighten things up, and I am a (now chemically-enhanced) blonde. But we all look remarkably similar - same noses, same foreheads, similar mouths.

The first thing most people asked when I told them my diagnosis is “does it run in your family?” I understand why – before I had to become an armchair expert overnight, I also thought that not having much of a family history meant I had very little risk.

But experts believe that only 10% of all breast cancers are hereditary. All cancers are related to the genes, but most are “sporadic” – it’s impossible to determine why the genes malfunctioned.

But as our family photographs prove, the gene pool does not lie. I received the results of my genetic testing yesterday, and I tested positive for the BRCA1 gene.

This does not come entirely as a surprise. My grandmother had breast cancer at the age of 76, which is so late in life it is not even considered "family history," especially since women's lifetime risk is as high as one in nine. But she had a hysterectomy in her 30s, and ovarian removal could have put off the onset of the cancer. It could also have come from the other side of the family - although there are so few women on my father's side that it's hard to identify a clear pattern, the gene can manifest itself in men as skin cancer, which has plagued his uncles.

In a strange way, the news is almost a relief. There are far fewer questions about a treatment plan - I will have chemotherapy, followed by a bilateral mastectomy and reconstruction using implants. And at least I know why this has happened to me at the age of 33. It also makes it easier to answer seemingly innocuous questions like "does it have to do with diet?" (to which I occasionally want to respond, "You know, you're probably right - if only I hadn't eaten those 5 cheeseburgers the summer of 2003!")

I don't really resent the questions, though, because I understand the need to lay blame, the comfort in theorizing how to avoid it. I played the same game when I got my diagnosis - I immediately started trying to figure out "what I had done wrong." Which is ridiculous, because if we could isolate that, then we'd be a lot closer to a cure than we are today.

No, all I did was to be born into my family, which is something I would never change. Sure I inherited the gene. But I also inherited my mother's writing skills and singing voice, my father's intellectual curiosity and debating ability, my grandmother's energy and analytical business mind, and my grandfather's love of family and joy at starting new projects. I am what my family has made me, imperfections and all, and for that I am truly thankful.

Best wishes for a wonderful Thanksgiving to you and your families.

Cause for Celebration

My breast surgeon called yesterday with very good news - my sentinel nodes are clear of cancerous cells. This confirms that it is unlikely the cancer has spread beyond the original tumor, which is very encouraging.

Given the tumor's size, there is still a chance that renegade cells have broken off and are somewhere in my bloodstream, which is why my doctors are still recommending an aggressive course of chemotherapy to kill the cells in the tumor and those that might be somewhere else in my body. However, the immediate risk of further spread is minimal, so this news has helped us decide to delay starting chemo for 2-3 weeks until I complete one more round of IVF. Although things can always change, I have updated the schedule post, below, and will try to keep that current.

Several of my girlfriends had already planned a "Pre-Chemo-Cocktail Cocktail Party" for last night since my first session was originally scheduled for today, so we went ahead and turned it into a "Negative Node" celebration instead - it was lovely to see so many of you despite the rainy weather! Here's hoping for more celebrations of good news to come...

Fermata

A weekend of successful shopping for hats and sunglasses (treats I am allowing myself because a) I will need them to succeed with my "Greta Garbo as chemo recipient" disguise, and b) I don't have to worry about them fitting if I gain/lose 15 pounds on chemo, both of which I have heard are firm possibilities) and watching silly movies ("Borat" is every bit as offensive and genius as you have heard it is) made me forget the dull pain under my arm from lymph node surgery, and the dull pain in my head from worrying about all the decisions I have yet to make.

This week I have been distracted even further as I am attending a conference and conducting meetings in Las Vegas. Perhaps the fact that it is 10:30 pm local time as I write this in my pajamas (and admittedly rather luxe "Wynn" slippers) will serve as evidence that I am not living the high life everyone assumes I must when visiting here. Fortunately, several colleagues are in town with me, so I have actually been able to sample a few of the schmancy restaurants - normally when I am in town, it is room service for one and episodes of The Office dowloaded to my Mac. What happens in Vegas stays in Vegas, sure, but only because it is too boring to write home (or to my cozy universe on the blog) about.

I measure the insanity of my schedule when I am visiting Las Vegas for work in $9 cab rides taken from one property to another to meet candidates - from the past two days alone, I am up to $117. But the other reason I have not written much this week is that there is not much to write about. We are in a holding pattern for the next few days, a pause in the incessant appointments and treatments while we wait for the additional information that will influence my next decisions and actions. I will get my final lab results from the biopsy sometime this week. My genetic test results are due in early next week. And hopefully IVF2, Return of the Follicles, will begin around the same time.

So to expand on the musical reference from the title, now is not the part where you applaud. Instead, it is where the musicians briefly pause before continuing on with the original piece - its length is entirely at the discretion of the conductor.

Decision 2006

This past Tuesday, I voted in New York. As I walked through the hallways of PS 9, the hand-lettered signs on the wall pointing the way to the polls and the smell of brownies from the bake sale to benefit the PTA made me a little homesick for Des Moines.

My dad always treated Election Day as a great opportunity to give a civics lesson. Usually we would walk to Merrill Middle School when he returned home from work, him still in his three piece suit and wing-tips. We would walk the two blocks to the school, passing the rambling brick homes of Grand Avenue, each with at least one sign in the yard promoting a candidate for whatever office might be up for grabs, and usually more. Iowa takes elections very seriously – I wonder if it is from a fear that if we did not, we might lose our position as the first caucus in the presidential primaries, and our once-every-four-years guaranteed place in the national headlines would disappear.

The curtained booths in the school’s lobby held a sense of mystery and possibility. “No, you can’t come in with me,” Dad would say solemnly. “It is the right of every citizen in a democratic country to vote without having to tell anyone for whom they voted.” As I grew older, I would cajole and argue that it was a pointless charade, that of course I knew which way he voted, that it was senseless for him to be so cagey about it. When I was young, I just wanted to push the buttons and pull the lever.

I like that New York still has these old-fashioned machines – it adds a certain element of excitement to the voting process. What if I do it wrong? What if the lever gets stuck? Who is this mysterious "The Rent Is Too Damn High" party (watch out for the funky music!) and how on earth did they get onto the ballot, their name in big letters in the first row across the columns just like all the other legitimate parties? I cast my vote and pulled the lever as instructed, my action rewarded with a satisfying “clunk” as my vote was registered.

If only the rest of my decisions that day could have been so clear-cut and final. From the polling place, I went to Cornell for my blood test and ultrasound. After the obligatory waiting room shuffle, the doctor (the fifth one I had seen there in five visits) informed me that I had one “dominant follicle.” The IVF had not worked as hoped.

The idea is that the follicle stimulating hormones I was injecting into my body would allow multiple eggs to be retrieved, usually four or five, but as many as 10 in women my age. Although my initial exams did show eight or ten potential follicles, it appeared that one “greedy egg” ate all the medicine and dominated all the others, which never grew. “Tonight you take the Human Growth Hormone, and 36 hours later you come in for the retrieval surgery,” the doctor informed me as he took off his gloves and left the room.

I knew it was not that easy. I got dressed and went out to find the nurse who had guided me through the process. She gave me a hug and a Kleenex and confirmed that each egg they retrieve has only a 50% chance of being viable. Chances that the embryo will successfully be implanted and matured eventually are 55-65%. Given these odds, we decided that going in for surgery for just one egg was a waste of time and the energy it takes to get through any surgery. It would also have delayed my sentinel node biopsy by at least a few days, as the retrieval would have had to happen on Thursday.

One option was to move things around and to have the surgery first, buying myself time before I start chemotherapy. But immediate reconstruction surgery, which most doctors prefer, provides an extraordinarily complex set of options to choose from – think Italian parliament rather than the US Senate-like choices of “lumpectomy vs. mastectomy” that characterize the primary breast surgery. I also want to have the results of my genetic test before I make a surgical decision, as I will definitely opt for a bilateral mastectomy if I test positive for the gene, and I don’t want to have to go through surgery twice.

After multiple phone calls to Michael, my oncologist and my surgeon, we agreed to wait until I had the sentinel node biopsy to make a final decision about whether or not to go through with a second round of IVF. The negative node result is a good sign that the cancer is not rapidly spreading, and both doctors assured me today that delaying treatment by what will end up being about three weeks (one and a half if I were to choose the “surgery first” option) is not a concern.

I spent most of the week feeling like I was back in the voting booth without the information I needed to make a decision about which buttons to push. It will be a few years before I know for sure whether this was the right decision, but after yesterday’s surgical results, I think I am ready to pull the lever.

Negative, in a positive way

A quick update to let you all know that I have just returned from my sentinel node biopsy. They removed two nodes, and both came back negative, which means that they are fairly confident the cancer has not spread beyond the original tumor. This will not be certain until the nodes are more thoroughly examined microscopically over the next week to ten days, but it is a very encouraging sign.

I was under "conscious sedation" and woke up after the surgery, but while we were still in the operating room waiting for results back from the lab. The anaesthesiologist was saying something like "does she have a beer belly?" and apparently that was enough to rouse me - I could not resist defending myself, and awoke to inform that I most certainly did not. The doctors laughed and assured me they were talking about someone's blind date.

They then went on to talk about weekend plans - I was even able to chime in with some recommendations. I was a bit troubled that I was unable to come up with a decent restaurant in the Theatre District, but that's difficult even when I possess all of my faculties. I did however advise that I would choose The Drowsy Chaperone or The Prime of Miss Jean Brodie over Mamma Mia, if I were buying the tickets.

Michael was there when they wheeled me out. Once they released me, we headed back to the Upper West in a cab, but since I am feeling good, we walked a few blocks home from the Apthorp Pharmacy to enjoy a gorgeously warm and sunny day in the city. I am off for a nap to sleep off the anesthesia, but since so many of you sent your good wishes yesterday and this morning, I wanted to let you know that it looks like they worked.

Schedule - Revised 12/12

Michael and I are such sad corporate weasels that we have worked out a system to ensure our Blackberries are always updated with my doctors’ appointments. On my calendar, they are color-coded orange. I assign each one a star rating and send them to Michael as an Outlook invitation so he knows what is going on and where he needs to be. No stars is FYI, one is I may need a shoulder to cry on after the appointment, and two stars is be there with me holding my hand.

I am not going to get so detailed here (and will not flood all of your Blackberries with meeting invitations!) but now that I am more certain about what is happening when, I wanted to post the tentative schedule. This all can change, especially since the egg retrieval date could change and throw everything off. I will keep it updated, especially since lots of my NY-area friends and prospective visitors have generously offered to keep me company in the big pink recliners on Friday mornings. But this is a rough guide at least (Updated with latest estimates on 11/10):

Thursday, November 9: Sentinel Node Biopsy (ambulatory surgery)
Wednesday, November 22: Receive results of genetic test
Thanksgiving weekend in Des Moines
Sunday, December 3: (Estimated) Egg retrieval (ambulatory surgery)
Thursday, December 7: First chemotherapy session
Thursday, December 21: Chemo 2
Monday, December 25: Christmas with the family in NYC
Sunday, December 31: New Year’s Eve (should be feeling okay, since it will be the week before chemo)
Thursday, January 4: Chemo 3
Thursday, January 18: Chemo 4
Thursday, February 1: Chemo 5
Thursday, February 15: Chemo 6
Thursday, March 1: Chemo 7
Thursday, March 15: Chemo 8 (Finito!)
Mid April (about 4 weeks after last Chemo): Surgery

Many of you have asked what you can do, and what I would love is for you to keep those lovely cards, happy emails, supportive blog comments and silly photos coming, especially on Fridays through the cold winter months!

Babymaking

New York is quiet at 7:00 on a Saturday morning. I notice a few people bundled in hats and scarves walking their dogs, a guy in a baseball hat and sweatpants out buying coffee, the cleanup crews in their John Doe Fund overalls as the taxi takes me from the west to the east side.

The buzz of activity at the Cornell Center for Reproductive Medicine and Infertility comes as a shock after the calm of the still-sleeping city streets. The door opens into a room full of chairs and sofas, the 50 or 60 seats mostly occupied by couples and women in their 30s and 40s, well-groomed despite the early hour. With a coffee machine in the corner, magazines in wall-mounted racks, and people reading the newspaper, it feels like a business class airline lounge with fewer suits and more women carrying a different kind of baggage.

There is a protocol. Arrive between 7 and 8:30 in the morning. Sign the pink sheet if it is your first visit. The green sheet if you are here for hormones. The white sheet is for the regulars going through IVF. You sign your name, you sit and wait. They call you in and draw your blood. You go back and wait some more.

But the rules don’t apply to me. “I was told to ask for Kathy,” I say quietly, trying not to draw attention to myself. I feel the eyes of several women nearby on me as I ask to jump the line. I wonder if they are asking “who the hell is she?” as I am processed swiftly – I barely have time to take off my coat before the nurse who works closely with the doctor who focuses on preserving fertility in cancer patients calls me back for my bloodwork. “Don’t envy me” flashes through my mind as I pick my way through the sea of crossed legs wearing saddle-colored driving loafers or tall boots with jeans tucked in.

The special treatment continues after my blood is drawn. My chart goes to the front of the queue. I do have to sit and wait for an room to open up before I am called back again. Eventually I am guided back to the warren of examination rooms and told to get undressed from the waist down. I am relieved that Katherine and Emily arranged for us to have a pedicure at Jinsoon last Monday before dinner at Snack in the Village. Once again, I have neglected to wear socks.

They don’t bother with hospital gowns – with all the women they process during the ninety minute period every morning, 365 days a year, they have probably studied the time required to change in and out of gowns and determined they could increase efficiency by 25% by eliminating sleeves and ties. Instead, you sit on the paper cover of the exam table, a sheet protecting your modesty.

Of which there is very little left. I counted – in the past few weeks, 14 strangers have had their hands on my breasts or have been eye-to-eye with my ovaries, and there are more to come. If this were high school, my name would be in three-foot-high letters on the bathroom wall.

When the doctor finally enters, the exam is swift. Feet in the stirrups, ultrasound wand, follicles observed and measured. Later that night, after my blood count and photos are reviewed, I get my marching orders. Take two of these pills, inject yourself with this much of that shot, inject yourself again the next morning to make sure it doesn’t kick off too soon. This will go on until sometime the middle of this week, when we are ready to harvest, fertilize and freeze.

As I walk back through the waiting room, the sea of faces makes me slightly relieved that I am in the special treatment category. For Michael and me, this is still just an insurance policy – only 30% of women under 40 who go through chemotherapy go into early menopause permanently. Although it may take as long as 18 months for my cycle to return to normal, there is still a fighting chance I will be able to get pregnant naturally. And if not, I will come back to these offices, surrounded by a new group of young and not-so-young women, all of us hoping that the wonders of science will step in where nature has faltered.

Normal-ish

This is probably a better response than “fine” when people ask, “how are you doing?” Everything feels normal…ish. I have been back at work since last Monday, but have been out several mornings and afternoons for doctors’ appointments. I am on the phone and in meetings with candidates and clients as usual during the day, but in between I may hear from the genetic counselor or the fertility nurse about the progress of my test or dosage adjustments. My nighttime routine now includes injecting my thigh with follicle stimulating drugs in addition to the standard “brush teeth/wash face/remove contact lenses” sequence.

Michael took me for sushi at the glamorous restaurant Koi on Thursday, but anyone listening in would have found the romantic tableau somewhat marred by the discussion of chemotherapy options. He teased me over dinner at home last week that the reason our friend Jacob is staying at a hotel instead of with us on his visit to New York from London is because I have "the lurgy," but later that night he looked at me teary-eyed and confessed that he had been hopeful the biopsy results would come back negative, that the doctor would apologize that this had all been a terrible mistake.

My friends have rallied with invitations to gallery openings, scary movie nights, Tia Pol for tapas, and Halloween street parties, and the hugs we give each other upon arrival are longer, more comforting. Phone calls with my mother still include discussions of Thanksgiving plans, but we spend more time on the roll call of people we have heard from, the generous things they have done and said.

It struck me the other day that even though the worst of the chemotherapy and surgery will be over by springtime, my life has changed forever. I am no longer the girl who can go for her pap smear and call it a year. I can no longer tick the “No” box on all the doctors’ forms. I can’t blithely assume that an enlarged node under my arm is due to a cut from shaving. I will be monitored and studied and hovered over by my family, my doctors and myself for the rest of my life. With apologies to Diana Vreeland, “abnormal is the new normal.”

But given that it’s only been two and a half weeks, I am comforted by the fact that I am over the shock and adjusting to the changes and not hiding under the covers refusing to accept reality or take charge of my life. Although I may never again experience “normal,” I am already grateful for “normal-ish.”