Tuesday, August 26, 2008

The Wait

My lumpectomy has been scheduled for September 2nd. Until then, we still know very little about my tumor. We do know that it's triple negative - the worst prognosis for recurrence and survival and it's a grade III tumor, so it's as aggressive as tumors get. I guess I don't do anything half-assed. Even my cancer is all or nothing.

While we're waiting for my surgery, Boris and I begin to meet with oncologists and I get tested for the
BRCA1 gene. I also start reading every study I can find on breast cancer and pregnancy.

Our first meeting is with a well known breast cancer expert at St. John's. I ask her if I can just have a mastectomy and move on with pregnancy and life. Unfortunately, the answer is no. She says that my tumor is too aggressive and that regardless of whether the cancer has spread to my lymph nodes, I'll need chemotherapy. Throughout our meeting she calls me "young lady," and reminds me many times that breast cancer is curable and that I need to do what's best for me so that the cancer doesn't spread. I ask her about the baby and tears fill my eyes when she says that in her opinion, keeping the baby is too risky for both of us. In her opinion there aren't enough long term studies regarding the affects of chemotherapy on fetuses. She also tells me that I have a very high likelihood of being infertile after treatment. I tell her that I desperately want more children. Two more to be exact. She's not cold or uncaring, but very frank and just reiterates that my life is the priority and that she wants me to be around for Miles and that needs to be my focus. She basically has told me that I need to get over wanting more children. Jokingly, I ask her if I'm going to be bald. She looks at me seriously and says, "yes." That's it. Conversation over. I start sobbing to Boris. How the fuck can this be happening? I'm so heavy with sadness I don't know how I'm going to survive.

That same week, I speak to three oncologists via phone and email (including Dr. Susan Love) about the opinion I was given. People are unbelievably nice to you when you tell them you're pregnant with cancer. I have cell phones, home numbers, email addresses and have been told by several doctors to call them at any time. They all disagree with the initial opinion I received. I meet with a fourth oncologist at Cedars who had just met with the hospital's tumor board (comprised of 30 doctors including 7 oncologists). They also disagree. He says that there is no reason to terminate my pregnancy (no one says the word abortion in any of my discussions. Too unsavory to call it what it is I suppose). He says there is plenty of long-term data about chemotherapy during pregnancy (I've already read a zillion of the studies) and that the treatment he would give me doesn't negatively impact my recurrence or survival rate in a significant way. I tell him that I mean no disrespect by my next question, but I ask him about the religious make-up of the tumor board. I explain that Boris and I believe in quality of life, not just life and that we want a healthy, happy baby, not just one who is breathing. He assures me they are a sacrilegious bunch. I love this man. I feel much more positive.

In the midst of choosing an oncologist, I go to see my perinatologist, Dr. Silverman, to have my 12 week ultra sound. Junior Jr. (another boy) is perfect with a "beautifully thin neck." Dr. Silverman also agreed that the risks of a major defect or malformation of the fetus after the first trimester is very small (about 1%). It's still impossible to fathom how I can't take Advil or have a glass of wine, but chemo is safe during pregnancy. Our biggest risk is having a small baby. Apparently the placenta absorbs the brunt of the chemo and protects the baby, but then isn't always the best at delivering food and nutrition. Dr. Silverman said my chances of a small baby in utero are 30-50% and if the baby's growth is too small, I will deliver early so he can gain weight after he's born. He was also the first doctor to tell Boris and I that as we weigh our options, we need to have a frank discussion about whether Boris wants to possibly raise 1 or 2 children alone, as death is an unfortunate reality. He reminds us that we have no idea if or how my body will respond to chemo and unfortunately, I have the worst tumor type for recurrence and survival. Boris refuses to have that conversation because he says death is simply not an option.

Later the same day, I meet with my fifth oncologist, Philomena
McAndrew, who was recommended by almost everyone we've spoken to. Her practice is insanely busy but she is considered one of the best and I love her from the start (I initially was told I couldn't meet with her until October even when I told the receptionist I was pregnant with cancer and think I got the appointment after several doctors my family knows called on my behalf). She meets me in her office and immediately hugs me. She agrees that continuing with my pregnancy is safe, if I think I can handle it. We spend over an hour discussing various scenarios, courses of treatment and my pregnancy. I ask her if I'm going to lose my hair (I'm taking a poll in the hopes that someone says no). She says yes. Shit. It's then that I notice that she has thick, straight hair that falls just below her back. Rude. She introduces me to her staff, the nurses and they all look at me with such sincere sadness I think I'm dying for sure. These are medical professionals who deal with cancer patients all day long. But pregnant cancer patients...not so much. We're special. And sad.

Boris and I have all of the information that we can possibly have at this time. For now, we wait for my lumpectomy and the results. Boris and I really want this baby and are relieved that all of the doctors believe I caught my cancer early. If my lymph nodes are negative, my cancer is stage 1 and there's a very small chance the cancer has spread. If that's the case, we have decided we're going to keep the baby. If my nodes are positive, then it's stage 2 or worse and we're going to "terminate the pregnancy" so the doctors can immediately determine if the cancer has spread to my bones, brain, liver etc. and can determine my treatment accordingly.

I am trying to be positive and remember that breast cancer is curable and that my mom is the best proof of that but it's incredibly hard. I went from worrying about whether Miles naps well to worrying whether I'll be around for his 5th birthday. I am more thankful for Miles now than ever because I have to be strong for him and am having a tough time being strong for myself. I just break down all the time, but then he smiles at me or takes a few wobbly steps before tumbling down, and he shrieks with laughter and makes me smile and laugh and forget what's going on, even for a few minutes.

Monday, August 18, 2008

It's Cancer.

It's Cancer.

What? I don't understand. Did you just say it's cancer? That's not possible. Can you please recheck the biopsy to make sure it's mine? Fuck. I don't understand. What about the baby?

A little bit of history: When my son Miles was six months old, I started the campaign for baby number two. My husband thought I was crazy and told me that we could discuss more babies when Miles was one. When Miles was ten months old, my campaign was going well, and I knew that Boris would vote yes to starting to try for another child. I had gotten pregnant so quickly with Miles, that I had missed my yearly mammogram. My mother is a breast-cancer survivor of 25 years. Since she was diagnosed with stage III breast cancer at the age of 34, I have been seeing a breast specialist and having yearly mammograms since I was 30 (I'm now 34). In May 2008, I went to have a mammogram and bi-yearly breast examination so that I could get the green light for more kids. My mammogram and exam were normal. I was pregnant one week later.

This pregnancy was similar to my first. I felt fine except for some nausea, but nothing too serious. About nine weeks into the pregnancy, I experienced some very light bleeding. Terrified, I went to my o.b, Maria Ottavi, immediately. She did an ultra-sound and assured me that everything was fine and the baby looked perfect. A few days later that same week, Boris and I were watching T.V. when I felt some discomfort in my left breast. I felt a small, hard lump. I made Boris feel the lump, too. Although he felt it, he said that it was probably a clogged milk duct or something pregnancy related and I should just relax. Jokingly, I told a few of my friends that I was being tested because now that the bleeding had stopped, I had found a lump in my breast. They shared Boris' cavalier view that it was nothing. Ignoring them all, I called my breast doctor, Kristi Funk (I know, I know, there's much to write on her name alone, but she's rad, so I'll leave it alone), the following day and had an appointment for the following morning. Several of my friends patronizingly told me that it was a good thing I was seeing the doctor to make me feel better that the lump was nothing. No need for drama they said. And even though I was scared, I believed them because despite the lump and despite my family history, there was no way it could really be cancer.

Boris didn't come with me to the doctor's office the morning of my appointment. It was Friday, August 15. He was so sure it was nothing, why should he miss work? Dr. Funk came into the exam room and exclaimed that I was a baby-making machine. I showed her the lump and she did an ultra-sound. Reassuringly, she told me that although she saw a mass, it wasn't jagged the way that cancer was and the shadowing wasn't typical for cancer. Nonetheless, given my family history, she wanted to be safe and biopsy the mass. She assured me the biopsy wasn't painful and joked that it was nothing compared to an epidural. For some reason I assumed I would get the biopsy results immediately. When Dr. Funk told me I'd get the results on Monday, I burst into tears. Monday seemed like an eternity. The nurse told me that I would have to schedule an appointment to get my results. Dr. Funk was booked until 4:30. 4:30? Ugh. I pleaded with the nurse to squeeze me in earlier in the day. She said the biopsy results wouldn't be back until 2:30 on Monday. I told her that I was waiting to find out if I had cancer and 2:30 was better than 4:30 so could she please see what she could do. No dice.

On August 18, at 4:30 I promptly arrived at Dr. Funk's office. I should have known that the result was bad because if it wasn't, surely someone would have just left me a message saying the biopsy came back negative. But I was thinking positively. I should have known the result was bad when I was lead to the "comfort room" at the Breast Center, but I still didn't get it. I had been so upset after Friday's appointment, that Boris was meeting me to hear the results. As usual, he was late.

After a few minutes of waiting, Dr. Funk opened the door and sat down beside me on the couch. "It's cancer." she said. "What? I don't understand. Did you just say it's cancer? That's not possible. Can you please recheck the biopsy to make sure it's mine. What? Fuck. I don't understand. What about the baby?" I said. She started talking but all of the air had left the room and I couldn't understand anything she was saying. I just blankly stared at her. "Let me call my husband," I said. "He's supposed to be here." "Boris." I snipped. "Where are you?" He said "I'm ten minutes away. Sorry, I left late and there's terrible traffic." "Well," I said, "I have cancer so fucking hurry up." Silence. "I'll be there as fast as I can," he said. I hung up.

Dr. Funk asked if I wanted a few minutes to myself to make some calls and she could answer all of my questions when Boris arrived. She said she was impressed with how collected I was. I was in shock, not collected. She left the room and I broke down. I called my parents. My Dad answered the phone and I was crying so hard I could barely speak. "Dad." I sobbed. "Dad. I have cancer." He was oddly calm. He asked a few questions which I can't remember and reassured me that I was going to get the best possible care and was going to be fine like my Mom.

Boris finally arrived and we had a long discussion with Dr. Funk about my options. Unfortunately, we still didn't have the full biopsy results so a lot was going to depend on the type of tumor I had and whether the cancer had spread. Dr. Funk was confident that I had caught this early so all the scenarios we went through assumed that the cancer hadn't spread. She was assuming that because of my Mom, I was a
BRCA1 carrier and urged me to get tested immediately (the irony is that she had been pushing me to get tested for over a year and I refused because 1) I wasn't going to get a prophylactic mastectomy even if I was a carrier and 2) I was afraid I'd never get health insurance again). She said that if I was to remain pregnant, I should have a lumpectomy and lymph node dissection (removal of the entire first level of lymph nodes in the armpit) as soon as I was in my second trimester (2 weeks away). If I was to terminate my pregnancy, I should have a battery of scans and tests to determine whether the cancer had spread. The dye used for several of the scans, including the test to determine which lymph nodes to remove, wasn't safe during pregnancy. We asked a zillion questions. I can't remember any of them.

We left with our heads spinning and 39808579009883 unanswered questions. I was to start meeting with oncologists as soon as possible.