The Strength to Carry: One Mother's Journey with Genetics
These past few days, I've been experiencing breast pain. While it may be just the normal ebb-and-flow of breastfeeding, any pain in my breasts makes me scared, anxious, and nervous. I was going to hold on to this essay for a while - not sure when I was going to release it. But, today, I've decided that 2010 will be the Year of My Mastectomy. So, during this season of giving thanks, demonstrating love, and seeking peace, here is my latest essay into my personal journey as a cancer mom, cancer sister, and a cancer pre-vivor. Thanks for reading! -Liza "I don't know how to tell you this, so I'm just going to say it." Those words hung in the air like smoke in fog. Time sped up and stood still all at once. Slow motion met the click-click-click- quadruple fast-forward of my DVR menu. "Your daughter has cancer."
I clutched the waist of my 2-year old daughter sitting still on my lap. I could feel my own heart racing through her tiny body, and I could feel her breath on my arm take the place of my own breathing. I wanted to scream and crawl in the fetal position, recalling just two short years ago when she was safe and protected in my round belly.
"Please do not give her anything to eat or drink," stated the pediatric opthalmologist. "We may have to operate today. If her cancer is advanced, we'll be removing her eye tonight."
Within 24 hours, my daughter went from a carefree 2-year old in an Elmo shirt to a child with cancer. The 6-hour surgery to remove her eye freed her from the tumors that had destroyed her vision. Enduring six months of chemotherapy meant we could kill any stray cells that passed into her optic nerve, reducing her risk of cancer cells spreading to her brain. Once our lives settled into the routine of chemotherapy, hospitalizations, exams under anesthesia, and bi-weekly flushes of her port-a-cath, I obsessively combed through photos to find signs of leukoria - the tell tale white reflection in my child's eye that would have alerted us to retinoblastoma. In the hundreds of photos taken between birth and her 2nd birthday, I only found a handful. But, those handful have tattooed themselves into my palm. The guilt stamped it's place in my heart. The image of her a prisoner to IV lines burned in my brain.
"What did I do to make this happen?" I tortured myself with this thought every day. Once a skeptic of prayer, I found myself on my knees every night asking, begging, pleading with God to let me switch places with her. "Please, God, let me have cancer instead. Please, God, give me her tumors. Make me feel her pain of chemotherapy. Make me a prisoner of the pain. Just let her be a kid. I'll do anything."
While my daughter was going through treatment and recovery from enucleation, I became pregnant with our second child. My already lengthy prayer requests had included a new request: "Please, God, seriously this time! Please let this baby be healthy. Please don't let this baby have cancer." I was asking God this even though we had no confirmation that my first child's retinoblastoma was related to genetics. Given that her retinoblastoma was unilateral -- only in her right eye -- her cells likely mutated with no specific direction from her DNA. But, we had not undergone genetic testing for her cancer, so we were unsure about the cause at that time.
My pregnancy was both a blessing and an emotional curse. While my growing belly was a welcome distraction to our hospital and doctor's visits, I was consumed with the fear that my body had created the retinoblastoma in Joli. When pregnant with Joli, I was a healthy weight, ate all organic food, avoided caffeine, and got lots of sleep. My body was my temple. Now, with my second pregnancy and a sick child, most of my dinners consisted of leftover hospital food. Anxiety kept me awake at night and exhausted during the day. Caffeine was the only way I could make it through my 40-hour work week in a relatively stressful job. And, the first pregnancy and stress made every bit of food stick to my hips, thighs, and butt. My body was less like a temple and more like an empty cardboard container where "two all beef patties, special sauce, lettuce, cheese, pickles and onions on a sesame seed bun" once lived. Drive thru.
Shortly after I gave birth to a healthy 8lb 9oz baby, doctors checked my new infant's eyes for any signs of tumors. Thankfully, she did not show any signs of retinal tumors at 3 weeks old. This baby child continued to have eye exams every 3-6 months for the first 2 years of her life since we did not have any confirmation of whether the original cancer was genetic in my family. Each time she went for an eye exam under anesthesia (done this way so that the retina specialist can examine a young child without having to struggle), we held our breath and prepared ourselves for the worst. I did this each time out of sheer protection against a surprise diagnosis. Now, at age 3, my younger daughter has been cleared of any risk of retinoblastoma and has graduated to once-a-year exams in the office.
Just after my older daughter had finished chemotherapy, and just when our lives were beginning to return to normal, my oldest sister, Mary, was diagnosed with a very aggressive breast cancer at age 36. Given our family history with breast cancer, her doctors asked if they could test her for the genetic marker -- known as BRCA -- for breast and ovarian cancer. Mary tested positive for the genetic deletion. However, regardless of the genetic outcome, Mary had already developed advanced stage cancer -- the kind where you begin to plan for a life without her -- and had aggressive chemotherapy, radiation, and then a bilateral mastectomy. My sister was already so immuno-compromised when she went through the very risky surgery of of a bilateral mastectomy. She needed to follow this protocol because the tumor in her breast was so large that they had to shrink the tumor before even trying to remove her breasts. It was at that point when my sister, Grace, decided to get tested for BRCA. At age 34, Grace had not been diagnosed with cancer, but she wanted to assess her risk of developing cancer. After all, having the BRCA gene meant that there would be a 80% chance of developing breast cancer and a 60% chance of developing ovarian cancer.
After working closely with a genetic counselor, Grace tested positive for BRCA gene. She decided that a prophylatic bilateral mastectomy -- a procedure done to reduce the risk of cancer preventatively -- was the route she wanted to take.
Having just put my daughter's cancer battle behind us, I was reluctant to get tested. And, I was hoping to play my schoolyard odds with "Well, best 2 out of 3, right? I mean, 2 people already have it, so there's no reason for me, the 3rd, to have it." That was the fun side of me talking. The more angry side of me sounded like this, "No way, there is no way that I would test positive for BRCA. We've been through too much already. I'm pretty sure shit doesn't hit the fan twice!"
Through peer pressure, or "sister pressure", I went and met with a genetics counselor in Boston to gather some information about the process, about BRCA, and about my odds of having the gene. In October 2007, I walked down the very familiar hallways of the cancer treatment center that had become home to my family from August 2005-April 2006. I knew that the benefit of doing all of our testing in one place would be the ability to share information. We could share not only the information of the sisters, but we could also include my daughter's cancer information if it ever became relevant to our own BRCA experience. And, so, I began my testing.
I sat across from a kind, caring, and friendly genetics counselor who reminded me of a childhood friend that I dearly loved. Arrogantly, I told her that she did not really need to go into all the details about cancer, BRCA, and genetics given my experience and my sisters' obsession with all things BRCA. "Go ahead. I know all the statistics. I know that I have a chance of being BRCA+. I know that, if I do test positive, that a mastectomy would reduce my risk by about 80% and an oopherectomy -- removal of my ovaries -- would reduce my risk of ovarian cancer by around 60%. But, I'll cross that bridge if I have to. For now, let's just get some results." With all that we went through with my daughter having cancer, I was confident that I would come up negative for BRCA. I figured God, destiny, faith, or the good natured order of the world would make it so.
Apparently, I was wrong. Yet, my prayers had been answered. Not my prayers to avoid being BRCA positive, but my prayers back in 2005 by my daughter's bedside. Just a few weeks after I gave blood to my genetic counselor, my test came back. I, too, was BRCA positive. While I knew what the results meant for me, I felt a sickening pain for what the results meant for my kids. What is the likelihood that I have passed on the BRCA gene to my two girls.
What have I done? What did I just do to them? What kind of mother am I? I really didn't care what I'd have to go through. After all, I just saw my oldest sister go through chemotherapy, radiation and a mastectomy. I watched as my other sister went through a preventative surgery to have her breasts removed. I wasn't sure what I was going to do, though. All I could think about was my daughters. Particularly, my daughter who had just finished cancer treatments. Did I give her the genetic predisposition for both breast and ovarian cancer? Does the baby, too, carry this ticking time bomb of DNA?
I found ways to distract myself from obsessing about my genetic responsibility and my own physical responsibility. I began doing what any psychology major would have done -- I intellectualized the process. Freud would be so proud. I began speaking more about retinoblastoma, participating in fundraising events, creating college workshops and presentations on the experiences of cancer and pre-cancer, and joining online groups for pre-vivors and even for young pre-vivors. I've dedicated blog entries about being BRCA, spoken publicly at work, followed up on all of my medical tests and baseline diagnostics, and have even talked at length with my sisters about their surgeries.
But, I have never seen my sisters and their mastectomy sites. I never touched their drainage tubes. And, the very thought of what their saline-and-sewn breasts must look like makes me queasy. I'm immensely proud of them for what they have endured, and yet I can't bring myself to look at them.
In December 2009, my sister Grace called to tell me that she was celebrating her Mastectomy Anniversary. "That's great, Grace! Happy One Year Anniversary!" I said with such pride. "It's been two years, Liza. Two years," she replied.
Shit. Two years? It's been two years? That means that it's actually been two years (and 2 months) since I first met with the genetics counselor and discovered I was BRCA positive. It's been three years since the breast specialist and the gynecological oncologist both said to me, "We can schedule your surgery anytime. Any time soon." The folks in those clinics don't mess around. When they get confirmation that you are BRCA positive, they expect you to be in a paper thin johnny in the Recovery Room shortly thereafter.
***
In July 2008, after a year of baseline tests that determined I had not developed any cancer cells, I found out that we were going to be expecting our third child. I was filled with joy and excitement. And, I was even more excited when my cancer team called to set up my next appointment because I said, "Yeah, about that appointment. I can't do any tests for a while because I'm pregnant." Needless to say, they were less than thrilled. "You know that this means we won't be able to monitor you closely for any cells, right, Liza?" Did I have to say, yea, kind of the point? Freud would not be so proud.
***
In October 2008, at a routine obestrics exam, my OB/GYN felt a solid lump at the 7 o'clock location of my right breast. "When you check your breasts, have you noticed this lump?" he asked. I heard myself say, "No, why? Do you feel something?" What I was thinking, though, was "You mean IF I check my breasts, right?"
"Feel here. Deep. Right here," he said as he positioned three of my fingers in the 7 o'clock position near my right nipple. I pushed down where he had placed my hands and felt a pea sized lump deep within the tissue of my right breast. I felt my fingers leap off of my breast, and felt a grapefruit sized lump begin to form in my throat. Don't cry. Don't cry. Don't cry, I kept telling myself. Breathe now.
"You should call your cancer team right away," said my OB/GYN in a panic. "Can they see you right away?"
"Oh, yes. Yes, they can."
***
I called my cancer team from the parking lot. And, sure enough, my appointment for a Fine Needle Aspiration was scheduled in 2 days.
***
Those two days were awful. I fought the urge to let my imagination run wild. I lost that battle. I also did something a person should never, ever do when in a stage of crisis: I Used Google. I searched for all types of outcomes regarding cancer and pregnancy, chemotherapy and first trimester, radiation and fetal development, mastectomies while expecting. Naturally, nothing positive came out of those late night searches. I'm pretty sure it would have been a good time to buy stock in Kleenex tissues, because I can only imagine how much of their product I used in 48 hours.
***
The day came for my Fine Needle Aspiration. I was scheduled for an FNA as well as a breast ultrasound. Whenever I speak to students studying Health Care Administration, I usually bring up this doctor's appointment because it was one of the most nightmarish moments of my whole BRCA experience. Exposed, topless, and already emotionally unstable, I was subjected to a "well-meaning" doctor who decided to tell me that I was already delaying any survey of my condition because I got pregnant, that I really shouldn't breastfeed after my baby is born so that I can start up my survey tests immediately after I gave birth. "After all," she says,"I have seen too many women with advanced stage cancer because they decided to breastfeed and forgo their examinations. Breastfeeding doesn't promote bonding. Breastfeeding isn't any better than formula. And, I have 2 kids, never breastfed either of them, and we love each other so much." Oh, lady. Please stop talking....
If my boobs weren't flapping in the wind and my growing belly in the way of getting up quickly, I would have walked out of that room and demanded her supervisor. But, already emotionally wrecked, all I could do was roll my eyes and "uh-huh" her.
Thankfully, my cancer team (aside from random Breast Ultrasound Doctor) is amazing and called me with my results as I was walking to the parking garage. "It's fine. The lump, which we all agree is there, does not have any cells of concern after doing 2 Fine Needle Aspirations. Come back after you deliver so that we can begin our survey of you quickly. Have a beautiful pregnancy."
I got into my car and cried tears of relief. Then, I cried tears of pain. I'm not sure how many of my readers are familiar with Fine Needle Aspirations, but that procedure hurts! I think I had numbed myself to the physical pain in anticipation of bad news. Once the good news came, so did the burning pain in my entire breast area. And, just when I thought it couldn't get any worse, I realized that I was leaving Boston at 4:00pm, with no additional passenger to ride the HOV lane with me. And, I really had to pee.
***
I managed to put the breast lump experience behind me and focus on having a healthy pregnancy. I convinced myself that this was my last baby, my last shot at feeling a growing being inside of my belly. This would be the last time I would feel the kicking, the hiccups, and the heartburn. This would be the last time I would place my hands on my stomach at the end of a long day and feel comforted by a stray heel, an intentional turn around, or a tightening Braxton Hicks contraction. This would be the last time I would provide nourishment for my biological child through breastfeeding. The last time I would lie down next to my infant and comfort him or her to sleep. With the removal of my breasts and ovaries, this would be my last time.
*** On March 24, 2009, I delivered my son. He was a healthy baby, 7.5 pounds, 20 inches long, dark brown eyes. Soon after I delivered, our pediatrician looked at his eyes to make sure there were no tumors. At 3 weeks old, we brought our son to our retina specialist for an exam. And, at 3 months, 6 months, and 9 months, our son returned for exams under anesthesia in case our genetic test stating the retinoblastoma of my daughter was an isolated mutation --which is only 80% accurate -- missed something. As of his 9 month visit, we are still clear of any tumors.
*** At my visit to my OB/GYN for a routine exam, the doctor said, "I see in your chart that the OB who delivered your baby in March recommended that you consider the permanent birth control. You turned it down. Why?" she asked. "Well, while I've talked seriously and publicly about how this is my last child, it's much harder to actually make that happen when the decision is possible. So, I'm not going to really consider a permanent solution yet," I replied with much more confidence than I had in the past. "Well, given all of your genetic testing and information, are you sure you want to keep passing these mutations on?"
"Well," I said calmly. "Given that my children only receive 50% of my DNA and 50% of my husband's DNA, that's still a pretty good chance that they do not have all BRCA or any other genetic mutation. So, yes, I think I do want to take my chances. But, my concern isn't with what I'm passing on. My concern is more focused on how much time I can buy and gamble with knowing that I am BRCA positive."
I'd like to think I created a teachable moment for the young doctor who had just joined the practice a few weeks prior to my appointment.
***
I'm not sure where the story ends, quite frankly. There are days when I feel I have no strength to carry, and there are days when I'm not exactly sure what load I am carrying. Just the other day, my daughter, the cancer survivor, asked me about how she got her cancer (a cellular mutation) and how her aunts got their cancer (a genetic mutation). When my daughter was going through her treatment, I made a single promise to her. I promised I would never lie about cancer. I explained about "good copies of DNA" and "sick copies of DNA" and how those combinations sometimes result in cancer. As I spoke of her aunts -- my sisters -- she then asked if I would get cancer. I told her that I wasn't sure, but that I probably was going to have surgery on my breasts no matter whether I got cancer or not. My daughter began to cry. "Mommy, I really hope you don't get cancer. Cancer really hurts, and I don't want anyone to be hurt." I explained that sometimes we have to experience hurt in order to see the beautiful things. That it hurt when I was in the hospital to have my babies, but that they were all the most beautiful things in my life. We talked about how it must have hurt to have her eye removed -- though, she doesn't remember it -- but that now she is a healthy and beautiful 6-year old girl.
*** I always promised my daughter that I would never lie to her about cancer. There are just some days when I wish I didn't have to tell her the truth. The truth is a burden to carry. The inabilty to predict the future is the uncertainty to carry. But, my children, my health, and the will to be around for many more years to come gives me the strength to carry.