Shrinking

"Feel this. Is that a lump?" The "real" lump is in the left breast. I am pointing to the very top of my right breast, making Michael play doctor, and not in the fun way.

"That's your rib," he informs me, almost before touching to check.

"But it feels different than the other side," I say, now poking at and rubbing both sides of my chest.

"So your ribcage is crooked," he says mildly, continuing to brush his teeth. "Beats cancer." And I laughed.

I am trying not to be an obsessive "poker" - some women conduct hourly breast self exams after diagnosis, trying to divine whether new lumps are showing up or if the tumor is growing. For me, it's best to be aware of what is going on with my body but not to torture myself. So I try to limit my checks to once a week.

Wednesday, the day before Chemo Round 2, I checked in the shower. It felt smaller. But I was aware that could just be wishful thinking.

At chemo yesterday, the news was encouraging. I'm not crazy - the doctor agrees that the tumor is smaller. It seems that I am shrinking a bit too: I managed to lose a couple of pounds, despite Christmas parties, some comfort eating, no exercise other than a few yoga sessions and my usual walking all over the city, and the evidence suggesting that most pre-menopausal women gain weight on chemo (slowed metabolism, steroids, inactivity). I credit my reduced interest in drinking and sugar for the change. Good thing Saltines aren't too terrible for you! Maybe I should dye them red and green for Christmas.

Chemo itself was not too bad either. Mom and Dad are in town for Christmas, so once again I was surrounded by love and beauty for the 4 hours of checking in, waiting around, tests, more waiting, tests again, and finally the infusions of the 2 drugs.

I have been lucky to only feel mildly ill with Round 1, and so far not at all nauseated on Round 2. I had some bad headaches the first few days and anticipate they may happen again, but drugs and staying hydrated help with that. I have not had the "metallic mouth" that many women describe, nor have I suffered from the "severe bone pain" they warn can be a possibility with the shot administered the day after chemo to keep white blood cell counts high.

I have the energy to work after I take the post-chemo Friday and the weekend off. I still have my hair, although I suspect it won't be long now - Matt is bringing his clippers and razor for Christmas.

You can see from the timestamp that I am up in the middle of the night - not uncommon with the drugs, and also since I went to bed at 9:30 pm. But that should normalize over the next day or two. If not, the perhaps I can finally manage to stay awake late enough to catch Santa.

Oh yes - my "new lump" is indeed a rib. Crooked ribs do beat cancer, and I will too.

Believe

Our tree is up and decorated. We just completed the annual ritual of agonizing over the relative size of each of our 8 doormen's tips ("That one has been here for 11 more years than the other guy." "But he barely even opens the door!") I baked a pear and ginger cake to bring to a dinner party with friends on Saturday, and the smell of gingerbread lingers temptingly in our apartment.

So it's starting to feel festive, but that won't truly kick in until my parents get here on Wednesday.

My mother has always made Christmas an Event. Carol singing, tree trimming, special "Christmas pajamas," cookies and a note for Santa before we went to bed - my childhood memories of the holidays are positively Rockwellesque.

One year, when I was 9 and my brother was 3, Mom sat with us in my bedroom, reading 'Twas the Night Before Christmas and encouraging us to "Listen! Can you hear the reindeer's hooves on the roof?" We sat up wide-eyed, eventually falling asleep, only to fitfully wake up to check the clock every 40 minutes. At 4:30 a.m., much to the dismay of the adults, we couldn't stand the excitement any longer - somehow we convinced my parents and grandparents to put on their robes to see what delights Santa had brought before the sun was up.

This year, Christmas in New York will include urban variations on our old traditions - a Broadway show, a post-prandial walk in Central Park, skating at Rockefeller Center. But in the midst of all the holiday plans, we also have to deal with the new reality: Mom and Dad will come with me to chemo on Thursday, on Friday Mom will go for her genetic test, and sometime over the weekend, Matt will shave my head, as they say my hair will start coming out in handfuls on Friday.

When I called Mom to tell her about my diagnosis, the first thing she said was, "If I could have this for you, I would." And I know she meant it. This is not the way the universe is meant to work - parents are not supposed to watch their children battle diseases that most people don't get until long after they have had children and grandchildren of their own.

But now that this is what we are facing, all I want for Christmas is for her test to be negative. My genetic counselor thinks that is unlikely - although there is a 50% chance, since the gene came from either Mom or Dad, my grandmother's breast cancer suggests the gene came from Mom's side. However, it is impossible to rule out Dad's side - he has 2 brothers who have no biological children, and his father had only one sister, so there are very few women to look at for evidence. It's possible that it has silently been passed down through his family tree with no adverse effects until now.

The statistics are imprecise, but it is believed that women with the BRCA gene have as much as an 85% risk for developing breast cancer by the age of 70, vs. the 12% risk that the average woman in the United States faces throughout her life. The gene also raises the risk of ovarian cancer from 1.8% for the population to 55% for BRCA1 carriers.

Although there is some evidence that men who carry the gene have a slightly elevated incidence of colon, skin and male breast cancer, these risks are minute compared to the risk in women with the mutation. For all of us, it would be much better if Dad turns out to be the carrier.

We have already had some encouraging news - Mom's recent mammogram was clear. I am not only relieved for her, but also, selfishly, for me - if there was ever a time that I needed my Mommy, this is it.

We are going into this Christmas positive and strong. I made it through the first chemo with very few ill effects, and they say that my reaction to at least the next three rounds should be similar. Our apartment is decorated, our shopping is done, and I have absolved myself from most Christmas-card writing duties this year (apologies to my friends and relatives!)

But most importantly my family will be here with me. Twenty-four years ago, Mom convinced us that Santa was up on the rooftop, sleigh and all. Today, her conviction that I will be healthy again and beat this the first time around gives me confidence that we will all make it through these next few months stronger than ever. Just like at Christmas, the best gifts go to those who believe.

Masquerade

For the first time in as long as I can remember, I am not tempted to buy clothes. This is partly because I know my body will be different a few months from now. These changes may be both good (shirts will actually button over my chest without gaping!) and bad (they say that pre-menopausal women who go through chemo gain 15 pounds on average. Great - I can look forward to being bald AND fat).

But it's also because I have a newfound interest in accessories and makeup. Hats, sunglasses, scarves, earrings, lipgloss, eyeliner - I've bought them in multiples the past couple of weeks. I have no idea what to expect when I wake up on December 22, look in the mirror and find a hairless Courtney staring back at me. But I want to be well armed.

When I first got my diagnosis and called Kelly to tell her the news, she said all the wonderfully supportive and sympathetic things I knew I could count on her to not only say, but mean. Then in a more conspiratorial tone, she asked, "So, have you stood in front of the mirror yet with your hair slicked back to see what you'll look like bald?" I laughed - of course I had, even though it had been less than 24 hours since I had seen the doctor.

But it's hard to imagine the bald look. I do have a wig on order that will be ready this week, made of real human hair, highlighted like my own. I tried on a sample - it looked like me but with a better blowout. They can even paint in roots to make it look more realistic! (although it occurs to me that I am not sure who I think I will be fooling, since the existence of this website is proof that I am hardly a closed book...)

But people say you get tired of wearing the wig all the time. They can be hot and uncomfortable. Most women strip off the wig the minute they walk in the door, trading it it for a knit cap to stay warm inside. And on weekends running errands, I imagine I will be fine with just throwing on a hat. But I think I may need the armor of dangly earrings and fabulous sunglasses to truly feel ready for my closeup.

In the absence of bald shots or "real" wig pictures, I will leave you with one potential look - if there is a problem with the one I have ordered, I always have the option of wearing either one or both of the wigs that transformed me into Cruella deVil for Halloween*...

*shown here with Susan as a Palm Beach Bag Lady, Gretchen as a geisha, Bill as George Washington and an unidentified ghoul at the 69th Street Halloween Block Party

Cocktails as an Endurance Event

The feeling that I was having the worst hangover of my life at 7:00 p.m. on Thursday should have come as no big surprise, given that I started the mother of all cocktail sessions at 9:00 a.m. that morning. And I was mainlining them.

After the check-in, weigh-in and blood draw, they settled me into one of the big aqua recliners to start the IV drip of saline through a vein in my right hand to hydrate me before the chemicals began. There are 10 recliners in the room, facing the nurse's desk in a horseshoe shape. Each can be closed off with a curtain, but on Thursday, as on any other day that I have seen this room when walking past, no curtains were drawn. Like any other ritual, chemo has its culturally acceptable behaviors, and closing the curtain seems somehow antisocial.

Although some of my fellow patients might have appreciated it if we had closed ours off or even requested a private room, anything to slightly dampen the occasional peals of laughter. Who needs the distraction of the TVs hanging above each chair when you have Molly and Sarah telling tales of their adventures in the art world? They added a bright spot to the less-than-glamourous surroundings, with their shiny blond hair, gorgeous smiles and scarlet coats.

After a little shopping and lunch, they made sure I made it home to bed. Which was exactly where I needed to be. Michael came home that night and found me grey-faced and exhausted, a little nauseated, with a splitting headache. I managed a few saltines and some water before collapsing into bed at 9.

But by yesterday, the worst had passed. I woke up early with Michael on Friday and the color was already returning to my cheeks. After a few more hours of sleep, I felt immensely better, almost normal. Today I am a little exhausted, but am working through it with a bit of fresh air and plenty of naps.

To everyone who has sent flowers and food this week, thank you for keeping the apartment bright and our sprits and bodies nourished! And thanks to all of you for your thoughtful comments, notes and emails - knowing that I am going through this with so much love and support makes this 16-week cocktail party much easier to bear.

Almost Famous

Being told that the famous fertility doctor himself was going to conduct my vaginal ultrasound last Tuesday was like learning that one of your friends is bringing a Michelin-starred chef along to the dinner party you are throwing – there’s enough pressure when it’s just the usual crowd, but this heightens the performance anxiety.

“Only one, again,” he says, removing the wand and taking off his gloves. Statistically, five eggs are needed to result in one successful pregnancy later. Silently, I start to question what I have done wrong, why this has failed for the second time in a row. I feel like a 22-year-old who can’t pass her driving test– how can I be so bad at something that comes so easily to others?

The plaques and trophies that adorn the doctor’s office are not as reassuring this time as they were last time. Even one of New York’s 100 Best Doctors can’t give us the frozen embryo insurance policy we were hoping to have so that we could feel better about our chances to have children one, two, or five years from now, after the chemotherapy has done the damage that it inevitably does at the same time it does good.

Normally, women in my situation, who must undergo chemo but who want to get pregnant in the future, just cross their fingers and hope for the best. More recently, some doctors will give Lupron shots to artificially “shut down” the ovaries during chemotherapy, the idea being that it “hides” the egg reserve from the chemicals that are designed to attack fast-growing cells like cancer, hair…and eggs. Once chemo is done and you are off the shots, chances of returning to normal functionality again are greater.

Other women go through a round or two of “normal” IVF, the kind that can result in some women producing as many as 30 eggs at a time. However, there is some fear that the increase in hormones this process triggers may exacerbate a woman’s cancer.

So if you have access to joining a cutting-edge research study, cancer-specific “fertility preservation” is an option. I took a pill to suppress estrogen production at the same time that I injected myself with follicle stimulating hormones. Although this tends to result in fewer eggs (more like 4-8 in one cycle), it is considered much safer for women with cancer, although it is still being studied.

In my case, it only produced one each time, and judging from my estrogen tests, neither one would have been viable if retrieved. The doctor explained that this could be the result of a low egg reserve to begin with, which is unlikely at my age, or it could be due to a mechanical malfunction in the ovary that essentially triggers early production an egg.

He offers a ray of hope: “If it is the second, then you are a good candidate for ovary harvesting.” Sitting in his office 20 minutes after getting the news of my dominant egg, this seems like a reasonable option. It’s a simple laproscopic surgery. It is expensive, but insurance would probably cover it on the grounds that I have an increased risk of ovarian cancer given my BRCA status, and it is advisable that I remove my ovaries to cut my risk before I turn 40 anyway.

I call Michael and he comes right over from work. I start completing the paperwork before he arrives. If I am going to do this, it has to be 48 hours from now, so I fill out the forms that have suddenly become all too familiar – anaesthesia permissions, acknowledgements that all surgeries carry risk of infection, agreements not to sue if something goes wrong.

Michael arrives at the office and we head downstairs for much-needed caffeine and an attempt at clear thinking under pressure. We review the papers and talk about the risks. We are both nervous about the lack of data – it is an incredibly new technology. We joke that in addition to the benefit of being able to have children, we would also be making a major contribution to science. After agreeing that the risks of the initial operation seem low, and that the bigger decisions would come in a year or two when the time arrives to try to get pregnant, we schedule the surgery for Thursday morning.

I wrestle with the decision all day at work. I go through the motions of ordering the medicine I need to take that night from the pharmacy, but I also do more Internet research, both scientific and anecdotal, on women who have children after cancer treatments. It’s impossible to get solid numbers without a clear denominator, but I do read enough to start worrying about what I am doing to my chances of getting pregnant “naturally” after treatment if I remove an ovary.

The procedure itself is enough to freak out the squeamish. The doctor would remove one ovary, cut it into many small strips of tissue, test some and cryopreserve the rest. When the time came, we would implant several of the strips under the skin of my forearm and hope the eggs living inside the tissue would mature there, with the help of stimulating injections. Once mature, the eggs would be harvested from my arm, injected with Michael’s sperm and further matured in a test tube, and then the embryo would be implanted in my body. We would then hope I could carry to term successfully.

That night, both of us are uneasy. “We’ve made the right decision,” I say a few times, out loud, testing to see how it sounds.

It sounds wrong. We look at each other and know. We’ve had six weeks to grow accustomed to the idea that childbearing is likely to be a challenge for us after this, and we have discussed many options. We have accepted that there is more than one way to become parents, not all of which involve passing on what I already know could be a fatally flawed gene.

I have endless respect for my doctor’s work in this area – he is on the cutting edge of the little-examined consequence of premature infertility in young cancer patients. He provides hope for the future to people at a time when they most need it.

But Michael and I realize that hope is something we already have. Ignoring the siren call of being the cover girl for Reproductive Endocrinologist monthly, I cancel the surgery. I schedule my first Lupron shot for four days later, followed by my first round of chemo coming up this Thursday, December 8.