Risking My Life To Have a Baby: Take Three1June 3rd, 2013
This story originally ran in the September 2009 issue of Parenting magazine. I wrote it while I was 18 weeks pregnant with Nora, about where I am with my third pregnancy now. I wanted to repost it here because so much of what I wrote then still holds true. And I know, for my CML friends especially, how and why I choose to have children while having cancer is a topic of interest. This pretty much says it all.
(Parenting.com) – My son is not a hugger. He’s almost 2 years old, and I can count on one hand the times he’s squeezed his chubby arms around my neck (they all involve my husband running the vacuum). I’m okay with this because on the rare occasion when I do get a hug, I get very emotional. I imagine most moms experience these my-heart-might-burst moments when a seconds-long embrace makes them feel like the luckiest person in the world. But for me, it’s a little different. A little sweeter. And I am a lot luckier. See, I wasn’t supposed to have a baby. I’m a cancer patient. Seven years ago I was diagnosed with chronic myelogenous leukemia (CML), a slow-moving form of blood cancer. I’m in remission, thanks to a medication I take every day that states right smack on the bottle: Do not get pregnant while taking this drug. But I did. Then I stopped my lifesaving medication and endured nine long months of what-ifs: What if the brief exposure to the drug affects the baby? What if my cancer comes back? What if I leave my child motherless? I took a big risk, but it paid off even bigger. Now I want to do it again.
Getting pregnant with Alex was technically done the old-fashioned way, but really there was nothing old-fashioned about it. I had a team of doctors — oncologists, obstetricians, fertility specialists — and we had a strategy, a plan A, B, and C. Because of the risk of miscarriage and birth defects, I couldn’t take Gleevec — the drug that put me in remission — during the pregnancy. But my oncologist didn’t want me to stop it while I was trying to conceive in case it took a while. The less time off Gleevec the better, since it was pretty much a given that without it, the cancer would eventually come back. So the plan was to shelve the pills the second I knew I was pregnant (the half-life of Gleevec is short, so it would likely be out of my system before an embryo even attached to my uterine wall). Then hope the cancer stayed at bay.
Voluntarily skipping Gleevec felt like looking a gift horse in the mouth. I was diagnosed with cancer just six months after the “miracle” drug was approved by the FDA. Before Gleevec, many CML patients didn’t survive more than five years. You may not think of cancer patients as being lucky, but I was incredibly so. Taking Gleevec meant I didn’t have to endure chemotherapy or hospitalization or even lose my hair. I didn’t have to get sick just to get well, which is the unfortunate paradigm of most cancer treatments. My leukemia was whittled away by a little orange pill while I was working, playing, living. Yes, being diagnosed was terrifying for me and my family and I have angst-ridden and annoying tests every three months and will always have a great big question mark on my health, but my life with cancer has not been much different from my life without it. Because of this, I found it hard to grasp why I shouldn’t want to start a family.
Our pregnancy journey kicked off months before we even began trying with a semen analysis (my husband, Nick, loved that), constant blood tests to check my hormone levels, ovulation charting, and a slightly unhealthy obsession with the book Taking Charge of Your Fertility. We didn’t want to go through all the trouble of risking my life to have a child only to find out we were infertile. We were not. Three months into trying, I was pregnant, and seven days after conception — which was confirmed by a hypersensitive blood test at my fertility doctor’s office — I stopped taking Gleevec. Nothing could have prepared me for the screeching halt I felt that first day I didn’t swallow a pill. How would I survive without my safety net? But I did. I had my blood tested every month to see if the cancer was returning, and, amazingly, the results kept coming back negative. I was off treatment for a total of ten months and my disease never made a peep. Other than the epidural giving out just as I started to push (ouch!), the entire process went off without a hitch. Alex was born the day after his due date, plump, healthy, and hungry (double ouch!). I breastfed him for one month, then switched to formula so I could resume Gleevec.
Since having Alex, I have learned that every cliché about parenthood is true. It is a 24/7 job, you never stop worrying, date nights with your husband are definitely a must, and the truest of them all: They grow up so fast. Alex now feeds himself with a fork, bounds down stairs, and says, “Bless you, Mommy” every time I sneeze. Before I know it, he’ll be leaving for college. I know that we are incredibly blessed to have one child, but I’ve always wanted a big family and I hate to think that cancer could take that away from me — and take it away from Alex. I am the middle daughter in a ridiculously close family of three girls. When we were young and bickering over who got to be Barbie’s hairdresser or who raked in more Halloween candy, my mom would say, “Do you know how lucky you are to have each other? Someday you girls are going to be best friends.” We’d roll our eyes, but she was right. My sisters are my best friends, and we are always, always there when it counts. A year and a half after I was diagnosed, we learned that Melissa, the oldest and then seven months pregnant, had Hodgkin’s lymphoma. She began treatment immediately (they delivered her baby at 36 weeks) and went through months of hard-core chemo and radiation, then she relapsed and had to have a grueling stem cell transplant. Meghan and I were with her when she shaved her head, we took turns sleeping in her hospital room, taking care of her son, and when it was time to toast to remission, we had the champagne chilled and ready. Needless to say, I cannot imagine life without my sisters by my side, laughing, crying, bickering. And I want that so badly for Alex.
When I watch him with Melissa’s new baby, it brings this all into focus. No matter where Alex is in a room, if he hears a pacifier drop, he runs to get it, then delicately places it back in his cousin’s mouth. He sings “tinkle, tinkle” and rocks his teddy bears to sleep, and when he sees the little toddlers on his YoBaby yogurt, he points, declares, “Ba-by!” and then puts his finger to his mouth and whispers, “Shh, baby seepin.” If that’s not a sign that he’s ready to be a big brother, I don’t know what is. But it’s just not that simple for us. And as I contemplate going through the roller-coaster ride all over again, I can’t help but wonder: Am I tempting fate? Will I be as lucky the second time? What if I leave two children motherless?
Nick and I recently watched Dan in Real Life, about a widower with three children. How did his wife die? Cancer, I’m sure. They always die of cancer. During one particularly gut-wrenching scene, tears started streaming down my face and an uncomfortable silence filled the room. Finally, Nick said, “Jeez! This is depressing.” It was obvious we were both thinking about him raising our kids alone. We’ve talked about that possibility, of course, and while Nick is an awesome dad, I can’t imagine what it would be like for a little guy to grow up without his mom, without me. Who would sing him made-up songs about dirty diapers and put just enough cream cheese on his toast so that he doesn’t get it all over himself? Who would put him on the bus his first day of school and take pictures at his first baseball game? The thought makes me sick to my stomach. And I imagine that feeling will get exponentially worse with another child. But maybe not. A friend of mine who just had her second post-cancer baby said that having two kids makes her less worried about dying because she knows they would have each other. I guess she has a point. It’s a morbid one, but I get it.
What I try to focus on and explain to any naysayers is that I’m not on my deathbed. I’m not picking out baby names while sitting in the chemo room, pale and sick. But a lot of people don’t see it that way. In response to a blog post I wrote about wanting another baby, an anonymous commenter told me I was an idiot: “This time you’re not just facing the possibility of ending your life but also having a child grow up without a mom,” she wrote. “That in plain terms is selfish all because you can’t be happy with what you currently have, which is a great kid and husband. Horrible.” I’m not going to lie and say that reading stuff like this doesn’t hurt, and that there isn’t a nagging part of me that thinks, what if she winds up being right? When my sister had her transplant — which involved a five-week hospital stay in isolation — her son was the same age Alex is now. I remember him playing in her suitcase as she packed pajamas and magazines and her wig, and then pressing his face up against the window, sobbing “Mommy” as her car pulled out of the driveway, headed for hell.
Of course I don’t ever want my son — or any of his future siblings — to be in that situation. Of course I wouldn’t voluntarily put myself in harm’s way, cavalierly risk my life just so I can hang another stocking on the mantel next Christmas. But the truth is, I don’t think I am. I am not an idiot, and my doctors are behind me. Yes, my oncologist did joke that he would need to buy some hair dye for round two, since this time will definitely make him go gray, but he’s optimistic — and on board. As he put it when we spoke recently, “The question was whether or not to have kids, not how many kids to have.” My plucky, if a little delusional, interpretation of that statement is this: I’ve risked my life once with success, why not do it again? And so… we did.
This time was a little different, though; not so calculated. My doctor has increased confidence in my ability to remain in remission off treatment, so he wanted me to stop Gleevec even sooner to lessen any risk to the baby. Though there isn’t much data, it is known that the danger of exposure lies in the very early developmental stages, so he felt the safest plan would be to stop the drug at ovulation. My cycle is like clockwork and I know my body well, so it wasn’t a problem to determine, especially since we used those handy-dandy ovulation sticks again. For two months I got the smiley face, stopped taking Gleevec, then started again when my period came. This stopping and starting treatment was not ideal (my doctor’s words: “Is this what we recommend to patients? Heck, no”), but given my previous success with getting pregnant fast and staying in remission, it was a pretty good option. And it put the risk on me, not the baby, which is the way I prefer it. Fortunately I didn’t have to do it for long. After the third cycle, I was pregnant.
“Success!” I e-mailed my doctor. I am only 18 weeks pregnant as I write this, but so far so good. Like last time, I am having monthly cancer tests — if there is any change in my blood work, we need to know about it right away. I’m also seeing a high-risk ob-gyn who will be able to work with my oncologist should I need to start treatment at any point (there are a few pregnancy-safe options). But my doctor doubts it will come to that. Is he assuring me the cancer won’t come back this time? Absolutely not. In fact, he ended his last e-mail with “It could be completely different the second time… we don’t know.” But he is hopeful. And so am I.
In the meantime, Nick and I are focusing on the normal second-baby issues — like how we’re going to afford two kids in this economy, whether I’ll make it till January without chardonnay, and which bribes might work to get Alex potty trained in time. It’s not that we don’t understand the real risks; we do. It’s just a lot more fun to worry about what kind of car we’re going to buy than how we’ll deal if my cancer comes back and I have to have a bone marrow transplant, the only known cure for CML. I just don’t see the use in dwelling on the what-ifs anymore. If I’ve learned anything from my cancer experiences, it’s that you never know what will be thrown in your lap tomorrow, and obsessing doesn’t help. But I am thinking about how lucky I am that I get to have another baby, that Alex gets to be a big brother, and that there is life — a lot of life — after cancer.
By the beginning of the 5th paragraph, I couldn’t hold back the tears anymore. I’ve been reading your writing since your first article about living with cancer in Glamour years ago. I remember reading this article and remembered that i cried at at the same spot then as well. I’m not a mother, nor someone with cancer, but I am an only child. Reading about the relationship with your sisters really hit home (my mother lost 3 pregnancies after me)
So glad that you and Melissa are happy and healthy with your 5.5 children. Five years ago I lost my aunt to the same cancer Melissa had (4 relapses in 6 years) so the part about her treatment really brought back the tears and the memories. At the end I remember her saying her biggest regret was that she didn’t have just one more year pre-diagnosis because all she ever wanted was to become a mother.
The person who wrote that horrible comment is not someone you should be worrying about. Morbidly, anything can happen to anyone at anytime. You can’t live your life in a bubble to please others. You and Nick did everything right – game plan, appointments, tests and the blessing of your doctors.
Disregard any negativity that might come your way about Baby #3 and enjoy this little time you guys have left being equally matched with having one parent to one child
Random – Have you seen this photo making its way around the internet this week? According to the stories you write of Nora, this photo seemed appropriate.