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.