Tuesday, October 19, 2010


To say I wasn't nervous walking into Johns Hopkins today would just be a lie. Today was the day I would receive my pathology report - the day I would learn how far the cancer had spread.

I tried to push the thought aside - the one that makes me cry. The one where I imagine how old my children are when the disease comes back in my brain, my liver, my bones or my lungs, and the doctors tell me it can't be cured. What if that is my story? How old will they be? Will they be 3, 6 and 8? Will they be 7, 10 and 12. Will they be 10, 13 and 15. My mind hurts at the thought. All those ages are too young for my kids to not have their mother. Then the tears well in my eyes.

We drive to the top of the parking garage. We take the elevator down, and I repeat in my head, "I'm not a statistic. Whatever the surgeon tells me does not determine my story." But I'm nervous.

I shouldn't have looked the calculator up. Once I found it, I should have ignored it. But I didn't. A calculator that would let me enter the details of my breast cancer and then tell me my life expectancy. You entered in the size of the tumor, how many lymph nodes were infected, what types of things made the cancer grow. I wouldn't know all the details till we saw the surgeon today. But I knew enough to play around.

I knew the tumor was likely under 2 cm, a good thing. I knew it fed off of estrogen and progesterone, a good thing, in a way with some new drugs available. I knew the cancer was in at least one lymph node. Not good. Worse. The surgeon said three of the lymph nodes he removed looked enlarged. If the cancer had visibly spread to three nodes, how many more had invisible amounts of the disease? Each lymph node with the disease meant it was more likely the cancer was somewhere else too, lurking, hiding, waiting for its time in a little corner of my body to escape chemo, escape radiation, escape hormone therapy and return to grow.

Beep. Beep. Bop. The calculations didn't look dire. But they didn't look good either. I gasped when I saw how much my long term survival chances dropped with each additional node found with cancer.

We entered the Outpatient Center and got our orange security bracelets. There were less people than usual waiting on the first floor for the elevators. We waited for one instead of taking the stairs. We arrived four minutes early for our appointment at the Avon Breast Center. As usual, there was a long line of people waiting to be called back into the second waiting room. As usual, all of them looked far older than us. We waited for nearly an hour. I took out some paper and a pen. I started writing questions.

When would my port stop hurting? When would I know the numbness on the side of my body was permanent? What should I do so I can lift my arm above my shoulder again? My arm swelled up again some. Was that bad?

Would I ask the one I really wanted to know? What are my chances?


I looked at my list. What would I do when he told me the results? Would I cry? Would my mind keep seeing the same sentence over and over? Would I hear anything else he would say?

That's why I had my list. I would force myself to think.

Steve wrote work emails on his phone. "It doesn't matter what they tell us," he told me repeatedly. "The drugs are going to do their job." Steve was wearing the calm, confident face. I knew he didn't always feel that way. But he was doing a good job of making me believe it today.

The lady at the front desk called my name. Do you have any pain today? Yes. How much? Moderate. Do you want to discuss pain with the doctor today? Yes.

We're called immediately into the examination room. Steve helps me pull my loose t-shirt off. I can only lift my arms so far without pain, and I still have a long plastic tube shooting out of my body to collect the drainage from the surgery. I put on the hospital gown, sit on the examination table and wait. Several minutes pass so we start looking at the cancer staging flip chart. We've looked at this chart many times. It's in nearly every examination room we've sat in during the last two months. We start a familiar debate. Steve argues we're likely a stage III. He's preparing me for the worst news. I argue that there was a small chance, with just three lymph nodes infected, we could still be stage II.

More time passes. My back aches. So I lay down on the table and nearly fall asleep. Steve starts answering work emails again.

Then there is a knock. The doctor walks in. He's wearing a navy sweater that zips down halfway. His hair is cut close to his head. He wears glasses and has a goatee. He has a little extra weight on him. Each time I see him he reminds me more of a jolly family uncle then an oncology surgeon. We talk about the chart Steve's been compiling of how much fluid he empties from my drain. I almost forget the real questions for the visit. Then the doctor seems to remember too. "Let me go get your pathology report."

"Can I have a copy?" I ask.

"No," he smiles. Then says, "Of course."

He returns with the nurse that is a breast cancer survivor herself. They hold a stack of papers. The nurse seems to be smiling. I don't remember what they say next. I don't remember who asked what. I just remember one sentence. "The cancer was only in one lymph node."

The lymph node that had the cancer was bigger than the tumor itself. But no other nodes had the cancer. Not even a cell. And they had a lot of nodes to sample. They removed 17.

I could hardly think. I didn't even hope the news would be that good. I was just so happy. I felt like someone had given me a license to believe what I believed on most days. That it would be a hard year. But my baby would be fine. And I would beat the disease.

Steve was smiling. He offered to bring the doctor homemade humus, Lebanese style, with each chickpea shelled. He joked that it was far better than the Iranian hummus, where the doctor's roots were. The doctor started talking about high horsepower blenders and sneaking cabbage into his son's smoothies. The nurse continued smiling. The doctor hugged me. A first in my life.

I got out my list. I made sure I asked all my questions. But the answers hardly mattered compared to the phrase I kept seeing in my head. "One lymph node."

What are my chances? I'm not telling you. I'm not a statistic. But they're looking much better after today.

Wednesday, October 13, 2010


I'm here at home, back from surgery. My surgeon seemed very happy about the success of the procedure, which makes me believe him a little more when he tells me I should just rest and not worry. Wait. Not worry? That is my job. I excel at worrying. I could win worrying contests. Go on to Olympic trials for competitive worrying.

But I digress. He was very happy and that was good because he was attempting new surgical feats in my surgery. Namely, he wanted to install my chemo port without using an x-ray or any other kind of radioactive imaging techniques. Let me explain first. A chemo port is a device the surgeon will place under your skin on your chest that hooks into a central vein. The idea is to give your veins in your arms a break that might start to weaken under the repeated chemo treatments. Usually surgeons use imaging to make sure the line doesn't accidentally go into your lung or the wrong vessel. But in consideration of the baby, he was going to attempt the procedure without imaging. Apparently his surgical buddies blanched at the feat. But he was very happy about the results. Hurray for confident doctors. Go Dr. Habibi.

So I'm happy about that accomplishment. The baby's heart rate was plugging away like normal after the surgery. I'm happy about that.

But honestly, I'm not happy about everything right now. I'm working on it though... with lots of naps, my mom's chicken rice soup and homemade rolls, some 30 Rock re-runs, and prescribed periods of not worrying. Here is a list of the things I'm not super happy about right now:

1. Who came up with the idea to make that an outpatient surgery? Seriously. Maybe other women fly through that surgery. My pre-op paper said it would take me about an hour to wake up from general anesthesia and get my pain under control. Three hours after I exited the operating room (and I woke up soon enough to remember exiting it), I was still half-incoherent, vomiting, and crying uncontrollably from the pain. But it was time to close-up shop. I was the last person in the recovery room. Here are some pills for your pain (that haven't been working so far). If you get home and still can't handle the pain, you can call about coming back. Awesome. Did I mention that I wasn't handling the pain too well when I was leaving? Did the tears not give that away?

2. I can't feel much of the right side of my upper body, especially my armpit, the right side of my chest and under my right arm down to my elbow at times. Yet I still feel pain. Might this numbness go away? Yes. Might some of it stay? Yes. When they pull out your lymph nodes sometimes the thinnest and most invisible of your nerves get cut. I didn't know about this side effect. I'm not feeling super happy about it right now.

3. My hand swelled up suddenly on Sunday morning. I couldn't close it. I spent the rest of the day with my arm hoisted up on pillows to help it drain. Of course I'm panicking the whole time that this swelling means I'll have lymphedema. We spent the day back at the hospital to see the surgeon about that issue yesterday. Apparently, the swelling is a normal side effect of the surgery. I shouldn't worry that the swelling means I will have lymphedema. I've been repeating those words in my head a lot in the last day. Did I mention that I worry a lot?

4. Okay maybe some people don't want to look at their incision. But I've looked. I was under the impression that you wouldn't be able to tell after the surgery that anything had happened since my tumor was almost in my armpit. But that was not my impression at glancing at my arm. To me it looked like someone scooped out a chunk of flesh from my armpit. My surgeon told me to stop looking at it, that it would look different when it healed, especially once they took the drain out. Really this is probably the least of my concerns. So I keep telling myself, "Stop looking. Stop worrying."

Truly the big concern is our meeting next week when we find out the pathology of the cancer - How far into my lymph nodes did the cancer spread? When will chemo start?

Right now I should just follow my doctor's orders in blissful ignorance: Don't worry. And rest. Thank you so much for everyone that is helping me follow those orders, especially that second one.

Thursday, October 7, 2010

Surgery Day

Tomorrow is surgery day. I'm packing this day full of stuff to the end. I'll get a forced nap in the middle of the day tomorrow. I can catch up on sleep then.

Today: Took kids to Storyville. Got lunch. Put Henry down for a nap and got props, clothes, snacks, back-up clothes for the family photo session and kids prepped. Kind friend then snapped pictures of us as we ran, watched caterpillars, blew bubbles, read books and ate cookies in a gorgeous golden field. The kids enjoyed this entire activity completely. They especially liked calling Ms. Jeri crazy. Then we grabbed a pizza dinner. Went home. I spent 40 minutes reading & talking to Naomi and waiting for her to fall asleep. She is excited that she gets to wear her dress from the pictures for school tomorrow. Next I read to Henry, rocked him and hoisted his sleeping body into bed.

I wondered, "When am I going to be able to do all this again?"

I'm so anxious to get in the ring and start fighting the cancer with something besides broccoli sprouts and a good attitude. But I don't look forward to the big unknown either.

Tomorrow the doctors at Hopkins will install a chemo port and remove a lump and about a dozen lymph nodes from my right armpit, more or less. I joke that tomorrow starts the era of the "arm-in-the-glass-box" because when they take out your lymph nodes, they (the pamphlets of the medical community) start advising you about the dangers of lymphedema. The big "L" is a swelling of your impacted limb that can happen because the system your body uses to drain fluid, infections, bacteria, viruses and to transport some disease-fighting cells gets blocked. If lymphedema happens and goes untreated, the swelling can become permanent.

So the pamphlets advise me to avoid the following things from happening to my right arm: bug bites, cuts, scrapes, burns, bumps, dry skin with cracks, tight clothing, carrying a purse, heat to the limb and air travel without compression bands. Hmnn....

To prevent such things from happening, the pamphlets suggest: wearing gloves while cleaning dishes and doing laundry, wearing gloves while gardening, avoiding repetive motions with my arm, wearing gloves at all times when it is cold, shaving with an electric razer, lotioning and examining my skin daily, refusing blood draws and blood pressure reads from the affected arm.... or I could just buy a glass box for my arm.

I joke. But lymphedema is one of my worries. I have many more. Chemo - What will that be like while pregnant and taking care of two young kids? Radiation - Same questions. Lately I mostly think about my kids. When will I be able to pick them up again? When will I be able to play with them again?

But it could be much worse. I could be that young mother in the news who doctors cut in half to remove cancer from her hip bone and spine. My kid could have the cancer. I could be hit by a bus tomorrow.

I have a lot to be thankful for. Thank you so much to all the angels who helped me get ready for this new adventure. I've gotten so many things checked off my pre-treatment bucket list. I feel about as prepared as I can be. Now I've got to eat a bowl of ice cream before my surgery-imposed fast and hop into the fighting ring.