Sunday, December 12, 2010


Two weeks. Until Friday, December 3. That was the estimated lifespan of my hair, according to my chemo doctor.

I used to shrug off the hair loss that was a guarantee with my cancer treatment. It will grow back, I told myself. It’s not like it is permanent, like a mastectomy. And I get to try out having better hair than my own. How bad could it be? But as I got closer to that two-week mark after my first chemo treatment, saying and hearing, “it would grow back,” became more and more of a sour statement.

The more people who told me that, the more bothered I would get. I know they were trying to help. But it made me feel like they were saying I didn’t have anything to be upset about.

Increasingly I thought about two breast cancer survivors I spoke with. They told me losing their hair was the hardest thing about their treatment. And that statement was coming from two people who had double mastectomies. People who had to wake up from their surgeries with no breasts.

I imagined walking by the bathroom mirror in the morning hairless. I’d never seen myself without hair. I envisioned this large, bald, egg-shaped head some of the people in my family have. Wow, that could really depress me for an entire morning. More and more, hair loss didn’t seem like a tiny hurdle to jump over. It seemed like a giant brick wall where I couldn’t see the other side. And that side could last as long as nine or ten months with the pause in chemo I would take when the baby was born.

As the two weeks got closer, my sister cut my hair real short on Thanksgiving. I figured it would be less disturbing to pull out handfuls of short hair than long hair. I made her fix the cut like five times, trying to see if I could like it just right. Her boyfriend was falling asleep at the table, waiting for the hair cut to finish to go home. He didn’t say anything. His eyes just got droopier and droopier. Sorry.

My preparations continued. I borrowed clippers. I bought six hats from the cancer society’s online site. I only liked one when they came in the mail. I had my wig trimmed. I didn’t like it suddenly. It just looked so much like a wig to me and not my hair.

I finally started to like my new short hair days before the two-week mark. Great, I thought. Just in time for it to go. Steve walked by one night and ran his fingers through it. Usually having my hair stroked is one of the greatest pleasures in my life. This time I snapped, “Do you want to make it fall out sooner!?” Wow, it was getting to me.

Maybe it won’t happen, I started to think. Nothing has changed so far. My mom tells me my aunt only lost half of her hair with a similar treatment. Maybe my pregnancy hormones will help keep the hair on my head.

Then the day before the two-week mark, I wake up and notice my scalp aches where I slept on it the night before. By Saturday morning, my scalp aches in places where I didn’t sleep. No hair seems to be coming out. But Saturday night, as I remove a barrette from my hair, a few strands leave with it. That is not normal. I run my fingers through that area. A few more strands fall.

It has begun.

From hearing others’ stories, I know there will come a time when I can run my fingers through my hair and get not just a few strands but a clump of hair. My wig consultant told me about the time her 4-yr-old daughter, who had cancer, was playing outside in a strong breeze. She could see the wind blowing the hair off her head. I think I’m going to hold off on the shaving party till I get a little closer to that.

It is really windy Sunday. The wind blows my hair up, down and around as I stand outside and struggle with Naomi’s car seat buckles. The movement hurts my scalp. That night I can pull five strands or more with each swipe of my hand through my hair.

There is no hair on my pillow Monday morning. But I can comb out several strands in some areas of my scalp. On Tuesday morning I usually get about 5-10 strands with each comb of the hair. I start wearing a hat.

By Thursday morning, the hair doesn’t stop coming out. Each time I pull out anywhere from 2 to as many as 35 strands of hair. I spend most of the morning doing this, wondering if it will end.

Answer: No.

The kids are running around doing whatever, spilling their cereal, eating each other’s cereal, spilling their orange juice, screaming, making me pictures. A Scooby Doo video plays all morning long. Fortunately, it keeps repeating once it stops. This is not our usual routine at all. I thought I would take the kids somewhere. But I just don’t feel like it. I’ve promised to make them new pirate swords from spray paint, glue, paint sticks & popsicle sticks that they can decorate. This offer seems to satisfy them enough. I keep thinking the hair will stop coming out. It doesn’t. I fill one small trash can 2 inches high with hair. I realize this means I should warm the clippers up soon. But my hair mostly just looks flat still. Maybe I can get a few more days before the bald morning mirror trip.

After I put Henry down for a nap, I let Naomi play beauty salon on my hair. She tries to put this 3-year-old headband on my head. She forces it on. The band is so tight and irritating. I pull it off and hair rains down. Then she starts combing my hair. More hair rains down. I try to gather it up to not make such a mess.

When will I shave it? Tonight? Can I wait till tomorrow?

It’s 4:30pm. I realize I’ve wasted an entire day and more obsessing over my hair. I don’t want to waste another day. It has to happen tonight. Henry wakes up, and I remember their grandpa is coming soon to get them to spend the night. Tomorrow we're supposed leave at 7:30 am to get my second chemo dose. I wanted Naomi to watch if she wanted to. She says she does. Steve won’t be home till late. So I will have to do it right now. I take the kids upstairs to the bathroom. I grab some scissors and a couple of Naomi’s ponytail holders. I’m praying I can do it without crying in front of her. I can’t cry in front of her. That would be a horrible experience for her.

Henry is still in a bad mood from his nap. He is screaming about everything and running around. It's no wonder since I practically ignored him all day. He asks me for something about every 30 seconds – to wash his hands, to put on his pirate costume, to get a drink of water, to put his pirate hat back on, to reach his new pirate sword. Naomi teases him some. It doesn’t help the screaming.

Meanwhile I’m trying to section off some of my hair into this tiny ponytail to cut off in one chop. Okay, I’m going to do it, Naomi, I say. I pause. I can't believe this moment is here. Then I press down on the scissors. They are so dull it takes a couple chops to get through the hair. I turn to look at Naomi. She is busy making Henry scream about something. She didn’t see anything.

Do you really want to watch? I ask her. She says no then yes. So I ready another ponytail. Both ponytails have been from underneath the top of my hair where the cuts aren’t so noticeable. As I start to close the scissors, Naomi flinches and says, “No.” Henry is screaming again. I have no clue what is about this time. The screams echo in the tile-covered bathroom and make it hard for me to think. I hack through the ponytail slowly again, show Naomi and realize I can’t do this anymore. What a disaster. I’ve heard about people having parties to shave their head. This is anything but that. I can’t do it with the kids alone.

Their grandpa picks them up. I return to the mirror. I want to attend my writing group that night; but I don’t want to wonder about how much hair is falling on my shoulders as I sit there. So I decide I’m going to do it alone.

I cry and cry until my eyes are swollen and red, and my nose is filled with snot. Then I play two Regina Spektor songs on my iPhone: “I cut off my hair” and “Samson.” Her songs are not really about anything, she says. But they both have lines about cutting someone’s hair all off. They calm me down, and I start chopping. It is too hard with the dull scissors so I fetch my Cutco kitchen shears. That does the trick. It gets easier with each chop. I realize I’m living a 5-year-old dream of giving myself my own haircut. The job looks like a 5-year-old did it too. That’s ok. The razor will take care of that. Next I run the razor all over my head, leaning over a trash can to make a little less mess. I finally finish.

I’m feeling angry. What a disaster this whole process was. It was anything but planned out. There was no party. Not that I think I would have handled a party well. I put on this shirt that makes me look like I have tattoos all over my chest and back and up and down my arms. The shirt echoes my feelings. I imagine myself looking like a stormy punk rocker, except I need about ten more piercings on my face instead of the zero I have to really complete the look.

I stare at my head. There are a few thin and bald patches, and the hair isn’t evenly shaved since I held the razor at different angles. But I actually have quite a bit of stubble on my head. I don’t cry. I actually feel relieved, like a huge burden has finally been removed. It is done. The wall is gone. I can move on. And it will grow back, I remember with no ill feelings.

Then I make another pleasant discovery. My head is not shaped like an egg.

Saturday, November 20, 2010

Club Chemo

“It’s different for everyone,” is the big chemo tagline. That means no matter how many cancer patient stories you hear, you can’t know what your chemo experience will be like – a frustrating concept for someone who likes to prepare.

I try to think of chemo as a positive, life-saving measure. But it’s hard when you read the warning labels: May cause hair loss, nausea, vomiting, diarrhea, stomach aches, constipation, heart arrhythmias, fatal heart damage, extreme fatigue, mouth sores, joint pain, easy bruising/bleeding, slower healing of existing wounds, and a temporary white blood cell loss that can make common viruses and bacteria life-threatening.

Those are the warnings for the drugs I’ll be taking for the next three months. The drug I’ll get for three months after the baby is born has these warnings: May cause nausea, vomiting, loss of appetite, change in taste, thinned or brittle hair, joint pain, unusual bruising/bleeding, permanent numbness and tingling in your fingertips, fever, chills, cough, sore throat, difficulty swallowing, dizziness, shortness of breath, severe exhaustion, skin rash, change in bowel habits, and infertility.

Fun stuff.

Yesterday was my day to join club chemo for the first time. I know I need to do it. But I don’t want to. Part of me hoped my membership papers might get lost in the mail, despite all the perks, like free snacks and drinks at the chemo lounge. Six months of club chemo feels like an eternity to me right now.

We walk through this door at the back of my oncologist’s office. There is a white sign with the word “Stop” in red letters. In smaller print it says to double check you have your bracelet, among other administrative things. Oh, how I just want to stop. Of course, I don’t.

Behind the door, the mundane doctor office transforms into a hospital setting - Club Chemo. A wide nurse’s desk greets you with a second check-in sheet. Behind the desk are rows of reclining hospital chairs, separated by curtains and adorned with IV poles. Party-time.

When I came in to this place for blood work two days ago and saw people receiving chemo for the first time, my waiting chair faced two bald, elderly women who looked like they would pass away if you blew on them wrong. Their bodies seemed to give them more pain than capabilities. I felt really sorry for them. It didn’t help my imagination problems in positive ways. Chemo is what I dreaded the most about my treatment. The older women were like living, moving posters of my worst flashes of imagination.

Today the patients near me seem to be able to walk. They don’t look overly sick. They have hair. I learned this morning that I’ve got about 14 more days of hair before it starts falling out. How can they all be in here for their first chemo session? Then I get another glance at a woman with long auburn hair in her 50s. She’s laying in bed with her eyes closed. I notice her hairline is slightly crooked, like she turned in bed and the movement pulled her whole head of hair down diagonally just a millimeter.

My nurse comes in to start my IV. Her name is Kelly - she'll be serving me my cocktail of drugs today. I like her immediately. Her scrubs have pink breast cancer ribbon print all over them. I’m back in my upbeat, nervous tone after a few teary moments in the bathroom. I ask her if she’s bringing my poison. She makes a gentle complaining face. She hates when patients call it that. It makes her feel guilty about her job. But she adds that no one should have to go through it. I apologize. I explain that I know I’m supposed to be visualizing more positive things: like the drugs killing the cancer, peaceful beach settings or the image of a tiny Chemo Shark being unleashed to chomp away at cancer (while accidentally eating other cells too). But my imagination isn’t working well today. I tell her I’ve brought distraction instead – in the form of reruns from Season 3 of 30 Rock.

She starts me on the easy stuff: the steroids, the saline, the anti-nausea drugs. Steve starts up the 30 Rock Reruns on his i-Phone (I wish I could get advertising fees for that product placement). We start giggling aloud. The distraction is working. I feel this intense appreciation for the actors on the show – that I could be laughing out loud as my chemo drugs get wheeled down the hall toward their target.

The nurse comes back with the Adriamycin. There are three long, one-inch thick syringes filled with the drug that looks like red Kool-Aid. They are the biggest syringes I’d ever seen. I did some research on the drug on Wikipedia. Scientists first discovered the substance in soil bacteria found at an Italian Castle. It almost sounds romantic. But its nicknames give its true effects away. “Red death.” It also is known as the “red devil.” It can damage your heart though the damage is unlikely at lower doses.

I try not think about it and look back at the screen. 30 Rock takes place at a tv studio for a comedy show. One of the actors has been fined by the FCC for swearing on live television. Instead of feeling shame at the punishment, he gets excited because he realizes he can afford the fine, which means he no longer has to worry about what he says on tv. He can just pay the fine each time. Of course the show’s producer is pulling her hair out.

I start laughing again as the nurse starts to push the first syringe into my IV. Every time she pushes, I feel something heavy flooding into my chest. I start taking deep breaths because this weighty fluid makes it harder to breath. She measures my oxygen levels. They check out. But she starts watching me like a hawk. One of the warning signs of an adverse reaction to the drug is shortness of breath.

I return to laughing. She continues pushing. Each time the weight feels heavier and heavier. I’m starting to feel really uncomfortable. I’m about to ask her to slow down when she pushes the syringe again. My laughter turns to tears, and all these images flood into my head of me gasping for breath while they run for some kind of antidote. I know part of the discomfort is emotional panic. But that knowledge doesn’t stop the tears for a few minutes.

We take a break. When the nurse continues, she does it much slower. The pressing feeling becomes more bearable. Next she brings the Cytoxan. It looks less scary. Just a clear IV bag. But my research reminds me that this drug is related to mustard gas. Awesome. This one just slowly drips into my IV. The nurse slows the dripping more after my reaction to the last drug. I only have to take really deep breaths a few times.

We finally pull out at close to 3pm. We’ve been there for nearly 6 hours. I’m feeling real tired, even though the IV was pumped with steroids. I stay awake only by working on this blog. That is about all the energy I can muster.

Today, Saturday, I’m feeling better. I’m waiting for the fatigue side effects to start kicking in. Will it be today, tomorrow, Monday, Tuesday? Will I be one of the lucky ones who don’t get it so bad? I don’t know. But I can feel our baby boy kicking. The doctors assure us the baby will survive the chemo fine too. But feeling him move is a relief.

Thank you to all who helped us with dinner, meals, cleaning and support after the surgery. Your kind acts have meant a lot to us.

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.

Sunday, September 19, 2010

Professional Patient

I became a card-carrying patient at Johns Hopkins this week. It's true. The card is orange and plastic. It has a long number on it. But I'm not telling you the number. Like I'd let you take MY number, pretend to be me, and get to take MY breast cancer treatments. Forget about it.

The life of a professional pregnant cancer patient is pretty glamorous after all. The hospital people are always squeezing you in for liver sonograms and genetic counseling appointments at the last minute - other people sometimes wait for weeks for this kind of stuff. Then people stare at you, especially once you lose your hair. (Not that I've lost mine yet. But I sure took some sly double-takes at my fellow patients this week).

Plus who else gets to talk to a chemo doctor for close to three hours? Who else gets to visit a fetal anesthesiologist, a maternal fetal specialist, a dermatologist, a dentist for work to help prevent chemo mouth sores, a flu shot clinic, an OB-GYN, three wig specialists, the liver sonogram woman and the genetic doctors all in one week. And that doesn't even count the lab work. I pee-ed in 3 cups this week and had my blood drawn 2 times. All those other losers in the lab waiting area had one paper requesting their test. I had two papers full of tests.

The fun and excitement doesn't end there. The sonogram lady had not just one doctor but two look at the pictures to confirm there weren't any obvious tumors that had spread to my liver. Then she moved the sonogram paddle down so we could see Flicker waving his/her arms and legs and twisting around. That's right. On this sonogram machine, there was no fuzzy black-and-white blob. There was a definite baby profile. You could see arms, legs, feet, hands and even the umbilical cord.

Now that's special. So sorry. Again, I'm not giving you that card number. Get your own.

Beach Medicine

We spent the week after Labor Day on Hatteras Island in the Outer Banks of North Carolina. I highly recommend a pre-treatment vacation, if possible. In fact Johns Hopkins, maybe that could be your next clinical study: the effects of beach medicine on treatment success. I'll volunteer for that study.

Friday, September 3, 2010

A Tale of Two Sonograms

How often do you get to see live feed videos of the hottest growth spots in your body in one week? This week I saw two. Woohoo! The first one showed a flicker of light pulsating in a one-inch long object that already has hands, feet, a head and eyes at 9 weeks. Not that I could see these body parts. All we saw was a fuzzy, black & white blob. But we could see the heartbeat. And anyone who has gone through a pregnancy knows that seeing that flicker is a key checkpoint of life. This good news Monday was sandwiched between discussions of radiation, radiation burns, radiation beams (which apparently are way more high-tech these days), radiation side effects and browsing through an American Cancer Society catalog of dozens of different hat and wig styles.

On Tuesday, the sonogram picture was not so cheery. Half-naked and slathered in goo as doctors waltzed in and out of the room, I stared at an object that looked like a letter 'C' that someone squashed together. This puffy object was once a lymph node. But they needed a third sonogram from a breast expert to confirm it. There is so much cancer in it that when they biopsied the lump, the doctors didn't find any lymph cells. After viewing this video, we got to talk to chemo doctor (formally called a medical oncologist). No matter how nice he was, the words coming out of his mouth were not nice. Chemo sounded like a road trip through hell where you hope to come out with a 20 to 30 percent better chance at life but could also come out with no hair, a GI tract that doesn't like food, infections, anemia, swelling, memory problems, mouth sores and, though rarely, new cancers. He called it "dumb medicine" because even though it targets fast growing cells like cancer, it also hits all the other fast growing cells in your body. The young-ish and healthy, like me, are good candidates. I interpreted that statement as: The young-ish and healthy are good candidates because only the young-ish and healthy can stand it.

NOTE: We want to thank all of you that have sent kind words or offered to help in some way. Your words mean so much to us. They make me feel like I've got this room full of little bouquets of love.
NOTE 2: Flicker's due date: April 6 :)

A Brief Background

In early August, half-convinced that there was something wrong with my pregnancy, I rushed an appointment to my OBGYN while not even 6 weeks pregnant. Of course I thought the problem was an ectopic pregnancy. No, my doctor said, but you do have a lump in your breast. Probably no big deal, she said, but you should have it sonogramed and maybe biopsied to be sure.

Two sonograms and two biopsies later, I find out on Monday, August 23 that I have two tumors filled with ductal carcinoma. On Wednesday evening, I find out that the cancer is invasive. All-day Thursday we met with our first team of doctors from St. Agnes. During a short break in the day, we get lucky and get squeezed into appointments at Johns Hopkins on Monday and Tuesday for some second opinions.

We'll be travelling with John Hopkins on this adventure. While it might sound odd, they have treated pregnant breast cancer patients before. I'm not even their first this year. Also odd-sounding, babies have not been shown to be aversely affected by certain types of chemotherapy when it was started after the second trimester.

At this point, the road ahead looks to hold surgery, 6 months of chemo, a month or so of daily radiation treatments, years of a hormone therapy well-targeted to my cancer and a new baby squeezed in there somewhere before radiation. Ready or not, here we go.