An unexpected and unwanted end to my breastfeeding journey.

Breastfeeding and a Breast Cancer Diagnosis

Hey! So if you’ve been reading the Cloth Diaper Geek blog for awhile, you probably know me a little bit already but let me introduce myself again. My name is Rebecca. I’m thirty five years old. I am breastfeeding my third child, and I will be weaning her in three days because I was just diagnosed with breast cancer.

Whew. Didn’t expect that, did you?

Me neither.

Finding the lump

It all started with root canals. Five of them in three months. Those five root canals caused me to be terrified to eat and subsequently, I changed my diet to Paleo. Both limiting my calories and switching my diet caused me to lose 20-30 pounds. Because I lost that weight, I noticed that the lump, which I had previously thought was lumpy, lactating milk ducts, was actually quite large and different from the actual lumpy, lactating milk ducts that were next to it. So I called my OBGYN, and here begins my cancer story.

I wanted my midwife but she wasn’t available so I got the male doctor who was available—a man I’d never met. “What on earth is a man going to know about my breasts if he doesn’t have any?” I asked the secretary.

“I can schedule with a female but you’ll have to wait,” she responded.

“No, I’ll go with him. I just want to get this over with so I can stop worrying.” I am a hypochondriac by nature and I’ve been convinced a couple of times a year that I’m dying of something—WebMD always convinces me I’m right—so it’s nice to go to the doctor to have my fears assuaged. Only, that didn’t happen.

“It’s an unspecified lump,” the breast-less man said. “You need an ultrasound. And because of your age, a mammogram too.”

“Really? Mammogram?!?!” Somehow that word conjures up images of middle aged and white haired women. It never occurred to me to get a mammogram. In fact, my midwife hadn’t even given me a breast exam in my six week post-partum visit. I mean, I was lactating and feeding my baby on demand five to eight times a day. How could a lactating woman get breast cancer?

Anyway, they insisted on the mammogram and what could I do but oblige, so a week later I went to a women’s center to get it all out of the way so I could stop worrying about my “unspecified lump.” I couldn’t wait for the technicians and the doctors to look at it and say, “Oh that’s nothing to worry about! You just have a ____. That’s normal in breastfeeding women.” But they didn’t. The mammogram was inconclusive. The ultrasound that followed was inconclusive.

“It’s a tumor,” they said. “We don’t know much more about it. You need a needle biopsy so we can see if it’s benign (good) or malignant (bad).”

“Look, can you just do it now?” I responded in exasperation, my emotions fraying. “I babysit. I have kids at home. My husband is only home right now so this is when I can do it,” and miraculously, they could. They fit me into their morning schedule. I waited a half hour while calling my husband on the phone with the scary inconclusive news, meanwhile imagining the worst in a windowless, solitary room with a teal cabinet, a desk, and a table with magazines. A couple of sweet nurses and the biopsy doctor came in and introduced themselves and talked over the possibilities of what it could be in sweet, compassionate tones.

“Look,” the biopsy doctor said, “You have a 75% chance of it being nothing. There’s only a 25% chance that it is cancer.” but somehow, even then, I sort of knew I would be in the twenty five percent. God had been preparing me for this and I didn’t know it until that moment when all the things we’ve been through started to come together and make sense.
We did the needle biopsy and then we had to wait.

“It will be three days,” the doctor told me, but since it was a Thursday, that really meant four. Four days of not knowing and imagining the worst.

Reflection

I spent those four days in a lot of reflection and prayer, writing letters to my husband and children in their journals (I’ve written letters to each of my children in those journals since they were born), and just spending time with my husband and kids. When I wasn’t purposefully praying through and writing about my feelings about the worst possibilities, I was trying to just go about life like normal, but I was on edge. I was trying to be calm, as I mentally prepared myself for the worst possibilities and repeatedly surrendered myself to whatever God’s will may be, but I’m not naturally a calm person. I’m a worrier with a terrible case of anxiety.

Monday was the worst. I knew the results would be coming by phone. They tried to have me come in back before they even knew the results, just in case it would be bad, but I said “No thank you, I have children to watch. Please, just call me. I promise, I’ll be in a safe place.” I couldn’t calm my heart rate all morning as I went through the motions of homeschooling and play time, nursing my baby, and preparing lunch. Finally, when my nerves couldn’t take it any longer, I unceremoniously put all the kids to bed for their naps without the usual routines and books and snuggles because I just couldn’t keep myself together for them anymore. I don’t even think I nursed my one year old to sleep because she, ironically, had fallen asleep without nursing. I didn’t know it, but our on-demand-the-baby-is-grumpy nursing session would be our last before our breast cancer diagnosis, and would also be our last on that breast. I’m so glad I thought to take a picture. Eventually, all the kids calmed down and fell asleep and when I was downstairs moving my laundry from the washing machine to the dryer and talking with my husband on the phone (he was on break at work), the biopsy doctor called. He said it quick like ripping a band-aid off. 
“Rebecca, the tests came back positive. You have breast cancer. It’s stage one and grade one and the prognosis is good.”

Believe it or not, I breathed a sigh of relief. This was so much better than the possibilities my brain had conjured up all weekend.

“So, what are my chances of beating this?” I asked.

“Very good. You’re going to beat this,” he said without hesitation.

All I could think was, “Thank you, Jesus. I’ll get to be there for my kids’ graduations, weddings…my grandchildren.”

I called my husband back. I tried to say it fast and quick so he could hear the worst and the best all in once breath but still, he sounded like I’d knocked the wind out of him. I was so sad I couldn’t be there to hug him and let him process the shock of it by my side, with my touch. There was no other way. We had already discussed that he would come home if the news was bad so what could I do, say: “Honey come home,” and not tell him? I had to tell him on the phone. Then, I started calling other people and telling them the news, not having processed it myself and not realizing it. Once I experienced a few of their reactions, I realized I couldn’t be the news giver anymore. I called one more friend and asked her to spread the news, and I let the family members I’d already told tell the rest of my family. Telling people you have cancer is almost worse than having cancer because the word “cancer” strikes a particular type of fear in people’s hearts. They don’t realize that you, the patient, are being dragged through those emotions over and over again as they feel them for the first time. I never knew that.

“I realized that I’d unwillingly entered the breast cancer club. I wanted to give the bags back and say, “No thank you. I’d rather not join,” but I didn’t choose the club, it chose me.”

My husband came home, and I went back to the women’s center, to meet with my nurse navigator. She immediately gave me two pink bags full of goodies made by or provided by breast cancer survivors and I realized that I’d unwillingly entered the breast cancer club. I wanted to give the bags back and say, “No thank you. I’d rather not join,” but I didn’t choose the club, it chose me. I couldn’t leave now that I was inducted. I am now a permanent member. She walked me through possibilities and options and what to expect and who to call for help and who to talk to and many more things that I don’t remember, while my husband stayed home with napping kids and face timed the entire thing. She was sweet, and friendly, and open and I just wanted to close my heart to this kind stranger who was prying into such a private, emotional place. I brought up the breastfeeding, and she was the first to tell me I needed to stop.

“I don’t want to wean,” I told her. I wanted to tell her more, but I also didn’t want to cry in front of her.

“You need to.” You need to stop immediately on the side with the tumor, in case rogue cancer cells make it into your daughter’s body, and then gradually stop on the other side.”

I obeyed her instructions to start weaning, but I didn’t actually intend to fully wean. I thought maybe I could dry up on one side and just keep going on the other. Two days later, when I pumped and dumped from my cancerous breast for the first time in my life, alone in the dark, after the kids went to bed and before my husband came home from work, I cried because the liquid gold was suddenly a potential poison to my baby and there was nothing I could do about it. I poured two, beautiful ounces down the drain and I felt like a little piece of me went down with it.

A week later, when I’d recovered from the shock of the diagnosis, I met the breast surgeon who was actually very sweet but in her thoroughness in walking us through every possibility, she made me feel a little like a frog stretched out between pins, alive and prepared for dissection. I told her of my plans to just keep nursing on the one side, and she told me unequivocally (and kindly) that I am done nursing. I have to wean. There was no wiggle room and no loophole.

“You have fifteen days,” she said. “I want you to have her weaned in fifteen days. I’m sorry.”

That was the worst. To think that I may lose my ovaries, my hair, my fallopian tubes, my breasts, my menstrual cycle—that was awful—but the thought of severing that special relationship with my baby was what brought the most tears to my eyes. We left with an appointment with an oncologist and the number for a plastic surgeon. The thought of getting plastic surgery makes me throw up a little in my mouth—I like my body the way my babies have left it—but will I like it if part of it has to be taken? I really couldn’t process it at all and somehow, after all that may be taken from me, the thought of a plastic surgeon was enough to put me over the edge.

I left that meeting a zombie. My husband kept reaching for my hand on the car ride home. He was encouraged and upbeat because we’d established that the cancer hasn’t spread at all so he feels confident he will get to keep me around awhile, but I was trying to fathom life without these body parts and the nursing that make me me, and I was mourning the loss of them. 
“I’m sorry, I just don’t want to be touched right now,” I said to him, pulling my hand away.

“I’m just trying to make sure you’re okay,” he said sweetly.

“I’m not okay. I’m sorry, but I’m not.” I said back. We’ve been married over ten years now, so he didn’t take it personally and he wisely let me have the silence I needed to process, all the while leaving his hand where it was accessible to me as soon as I needed it.

I’ve gone through quite my share of emotional ups and downs since getting the diagnosis. I was pretty down after the the meeting with my surgeon (who I do really like, by the way), but I felt pretty good after meeting with the oncologist. We had a very positive meeting with him. We’re still waiting on a couple of tests to come back: some more hormone tests (my cancer is 95% responsive to estrogen), and some genetic testing, but basically he told me that my cancer is very cooperative, it hasn’t spread, and there is very little chance that I will need a mastectomy or chemotherapy. I expected to feel more shell shock when meeting with him, but all we felt was relief.

The dust has far from settled. No treatment has been started and there are still many unanswered questions, but we’ve found a groove of sorts, a new routine and a new normal and that feels good. The thing that still bothers me most is that I have to wean my thirteen month old. I know, I know. She’s over a year old. She’s already gotten the best of the breast. I’ve done my duty. But for me, nursing is one of the best perks of parenting. Also, I weaned my others before I wanted to (my first at 25 months and my second at 23 months) and this time around, I was going to let her wean when she was ready. We were going to nurse and nurse with no time line and no limits. I already knew I didn’t want another child (though now that I’m being told that I shouldn’t have another, I’m not sure how I feel about it), so trying to get pregnant, or an unexpected pregnancy weren’t going to cut us short this time. I had plans. I was finally going to let my baby take the lead.

I love breastfeeding. Well, I actually have a love-hate relationship with it because sometimes I just want my body to myself and I’m tired of being kicked in the eyeball by a toddler, but I love it so much more than I am irritated by it. I love the snuggles, and the closeness, and the way it puts my babies to sleep effortlessly. I love that even though everyone else struggles to calm my babies, I just have to pull out a boob and they’re calm. I love how every boo boo is fixed and every sadness is washed away with just one suckle. I love how my babies stay hydrated when they’re sick. I love being able to use my breastmilk as a cure-all for every ailment from diaper rash to ear infections. Breast milk is magic. Breast feeding is even more magic. I’m going to miss looking at my daughter’s bright, blue eyes sleepily over the crescent moon of my floppy breast before nap and before bedtime and whenever she feels like it in between. I’m going to miss it more than I can say. And I know that there will be no new baby this time, so this is actually my last time breastfeeding. Ever. That makes the pill so much harder to swallow.

I hate weaning. I hated it with my first daughter—who was old enough to be able to reason through the process with me in complete sentences. Weaning was a gradual process with her and we ultimately stopped because I wasn’t getting pregnant and I was willing to try anything, including giving up my favorite bonding tool. If I’d known then that it would take me another year to get pregnant and that I would nurse her the longest of all of my children, I wouldn’t have weaned her. I hated weaning my son when I unexpectedly got pregnant and suddenly struggled to keep hydrated and to keep calories down because pregnancy really kicks me in the butt. He was eighteen months old when I cut him down from five or more on demand feedings a day to one or two shortened feedings when he woke up and before bedtime. I didn’t actually make the decision to wean him, though. He did that on his own. When my second trimester came along I was going to pick it back up where we had left off, but by that point he didn’t need me anymore. He didn’t want to nurse. I think the milk just stopped coming, honestly, because he told me it was “all gone,” one day and from that point on he couldn’t remember how to suckle. He even tried intermittently when his younger sister came along. He watched me nurse her and it had only been three or four months since he’d stopped so he remembered and he wanted it, but he just couldn’t remember how to latch on. I let him try that every once in awhile until he turned three and when he still couldn’t do it, I told him he was old enough that he didn’t need to try anymore. But my third daughter—we were going to nurse forever, and she is being forced to stop a full ten months before her brother stopped. I’m not only heartbroken that I was unprepared for this unexpected separation, but I’m so sad that she doesn’t get the same benefits of her siblings.

I’ve nursed for a total of five years and every other time me or my nurslings have had a medical problem, all medical interventions have bowed to our nursing relationship. It has always been the most important thing. I’d become accustomed to medicine endeavoring to maintain this important bond with all its benefits. I have now talked with four medical professionals: my nurse navigator, the breast surgeon, an OBGYN doctor, and the oncologist, and not a single one is willing to let me breastfeed. Not one. “You’ve given her a year,” they said, “it’s time to take care of yourself.” They don’t know that nursing feels like taking care of myself and that not nursing feels like cutting off a limb. But I cannot breastfeed. Even in the best case scenario of a simple lumpectomy followed by radiation and hormone therapy, I cannot nurse. Breastmilk in the breast during surgery apparently makes it harder for an incision to heal, and hormone therapy crosses into the milk making it unsafe for her to drink. I will have to take hormone therapy for five years. I will be forty when I’m finally done treating my cancer. I cannot continue to nurse, and I will probably never nurse again, and it breaks my heart.

So, we are weaning. We have three days left and even the weaning is becoming part of my new normal. I’ve stopped crying at every feeding as I count down the precious times left to me to continue to do this. She’s stopped screaming at me and banging her face into my boobs when she can’t nurse during the day. In fact, one of her first words is “ba ba” which means bottle, ball, and baby. I’m trying very hard to get her to say “nurse” just once, but the “n” sound just isn’t in her phoneme set yet. She does say “Mama” though, all the time and with so many different voice intonations that it has so many meanings. That touches my heart. She seems to be growing up in a good way these past few weeks. I don’t know if it’s the weaning, or just the phase in her life, but I’m seeing a new, little independent girl emerge. She’s also finding other ways to connect with me. Before, I was the snuggly food source. Now she wants snuggles without expecting the breast, she is calmed by things like my singing and my prayers, and she makes jokes with me and giggles with me in ways she hadn’t before. Watching her feel completely fulfilled in her new normal without unlimited access to my breasts makes it easier for me to let go. She still nurses at night, and I know that the first time she doesn’t get to nurse a single time in a day we may have a temper tantrum. I also know that she equates my bedroom, my bed, and my getting into pajamas with an imminent nursing session, so the first time that doesn’t happen, there will be fireworks. But the other day, before her nap, she actually sort of let me snuggle her in my bed with a bottle, although not being tethered to me lead to lots of wriggling away. Still, the fact that she hung out with me in my bed without expecting the boob makes me so happy. I want to be able to still snuggle with her in my bed at night because that’s been our bedtime routine since she was born.

I don’t like this new normal. I don’t like that I have breast cancer. I don’t like weaning. I don’t like all the treatment that looms before me. But, I’m surviving and God is giving me peace and yes, even joy through the process. When the sorrow and the grief of weaning feel like they’re suffocating me, and when I feel like I’m cheating my youngest out of the best benefits of the breast and extended breastfeeding, I try to remember that I’m trading the ten months of nursing I had planned for a lifetime with her. When she is a teenager who still has a mom around to complain about, I think she will be thankful that I made that exchange. I think, so will I.