When all this started Indiana and I were actively nursing 3 times a day; First thing in the morning, before her afternoon nap and before bed. In addition we sometimes had a forth big nurse during the day and many pit stops through-out the day. We were not anywhere near stopping.
I had been one of those women who thought breast feeding a toddler was weird and more about what the mom wanted than what the baby needed. I had planned on nursing for a year, maybe a year and a half, and then stopping.
When I got to six months and some of the moms I knew were starting to wean their six month olds, I wondered why anyone would spend all that time learning to breast feed and then stop right when they got good at it. I had spent six months figuring out exactly what to do, and Indiana had spent six months learning just how she liked it. By that time she could help herself to the boob and I really didn't have to do much. So why would I stop? It had finally gotten to be that truly convenient thing that it was supposed to be. Don't get me wrong. It was convenient before that. I deliberately delayed starting Indiana on solids when she was clearly interested in food, when she was just shy of 5 months, because I was taking her on a road trip and it was going to be way easier to not have to deal with baby food and cereal and bowls and spoons and bibs and everything else while we were away from the house. In the summer when it had been really hot in our cramped south facing apartment I was able to take her into a cool bath tub and nurse her while we both got out of the heat. But right around the six month mark is when it stopped being about perfecting the art of breast feeding and more about just (shrug) breast feeding.
So why would I stop? Would you train for a marathon and then stop running just when you reached your best time? Would you learn how to drive and then quit right before the last turn on the drivers test?
When I got to one year it seemed like a huge milestone. And again mothers all around me were dropping like flies. Some of them found their children self weaning and some were just deciding that one year was enough. They'd set this arbitrary time limit and they'd reached it so... they stopped. But I realized I didn't want to stop. I saw no reason to. I had gone back to work 1 1/2 days a week. (That is to say one week I would work one day and the next I would work two.) I had found that Indiana would sometimes go all day without really nursing much - especially on days when we were out just before nap time and she would fall asleep in her stroller. So I didn't need to provide milk for her on the days that I worked - although I did have to pump to make myself comfortable at work, and I found she was starting to wake up in the middle of the night just to cuddle. But other than having to be the one to put her to bed every night, breast feeding was not inconveniencing my life. Honestly, any event that I wanted to go to in the evening would not be happening before Indiana was in bed, so it did not impact my social life. (Or the social life that I was hoping to have in the future.)
In addition to all the reasons that I could list for continuing to breast feed, not the least of which being the benefit to Indiana's health, I also am very lazy and undisciplined, and I like to avoid anything that might be difficult for me to do. I dreaded the thought of weaning. And I absolutely did not want to give my baby formula. One or two of the mom's in our toddler group were in the process of weaning and having a terrible time at it because their children were constantly asking for milk and crying when they didn't get it. Indiana has never been much of a crier. She's really a very contented and easy going child and I had visions of her becoming a screamer over the issue of being denied breast milk. I didn't want to have to deal with that. I knew I would have no will power to turn her down when she was crying. After months of the breast being the thing that stopped her from crying why would I want to, now, turn it around and make it be the thing that makes her cry? So, since everything I was reading was telling me that it is perfectly normal and natural to let your child decide when to stop and that the world average for breast feeding was 4 to 5 years, I decided I'd let Indiana decided when she was ready to stop. It had become such an enjoyable cuddle time for the two of us, I wanted to let it last as long as possible.
Then I got my news.
Indiana was one day shy of 13 months old when I was diagnosed. My first question to my family doctor was "Will I have to wean?" My doctor's response was based on the standard treatment for breast cancer. The standard treatment was surgery, followed by radiation if the nodes were clear and there was no sign of the cancer spreading. In this scenario I would not have to wean because I already only nursed on the unaffected side. And even if I didn't, one breast would provide enough milk to at least continue some breast feeding.
But when I met with the surgeon later that day the news was not as good. My case is not standard. When it comes to breast cancer, youth is not on my side. And while clear nodes and clear margins make for a better prognosis, it doesn't effect the treatment. Women my age get chemotherapy no matter what. I knew that I was being fast tracked and that I could be in surgery any day. But it was very unclear how long I had to wean Indiana. I didn't know if it would be weeks or months before I started chemotherapy. After having a few hours to absorb all of this shocking news I decided to e-mail Dr. Jack Newman and ask his advise. Here is his response:
You can breastfeed the baby on the side that got radiation, because the radiation will kill off the cells that make milk, so the baby can suck on that side. She won’t get milk, or very little if any, but she can be comforted. For the other side, you can pump off the milk and then offer the breast. The small amount of milk the baby will get will probably have negligible amounts of drug. So the baby can at least stay at the breast and eat solids and drink from a cup. Once the chemotherapy is out of your body (5 times the half life of the drug with the longest half life), you can start breastfeeding again. It’s possible, but it won’t be easy. If the baby rejects the breast because she doesn’t get milk, well, you will have weaned her but it’s she who will have decided, sort of. But if she doesn’t get bottles, she might come back to the breast.
I was bolstered by his response. I knew I was going to have to find out a lot more about my treatments but that there was a chance that I could continue to breast feed through out my cancer journey. Some people thought I was crazy. I was told that I should be focusing on my own health. Many people told me the same old thing, "At least she got 13 months." And everyone seemed to think that the issue was about milk. It's not. Milk has very little to do with it.
I also realized that my cancer treatment was something that I had very little control over. This was something that was happening to my body and happening to me. I was not a willing participant and had no real active role to play. Being able to continue breast feeding through-out my treatment was going to be a way for me to wrestle some kind of control into my life and over my body. And at the time I had no idea what I was in for. I was envisioning being violently ill from the chemotherapy, and I expected to be struggling to deal with the stress of the whole thing. For me continuing to breast feed was going to be something to focus on other than the cancer, and a way for me to have a few moments of relaxation each day, to really focus on my daughter and be a normal mom again.
The way it usually works is that you get diagnosed and they get you in for surgery as soon as possible. As soon as possible depends greatly on where you are, how busy the surgical schedule is, how busy your surgeon is and what else is going on with your cancer. The way it usually goes you get your surgery and then you wait to start chemotherapy. In my case they did all the screening tests that are usually saved for after your nodes come back positive, before the surgery. I have still never really been told why, but I assume that it is because the tumor was missed and grew in my body for nearly 4 months before being biopsied and after I had found it. Also, the usual order of things is that you get your surgery, You wait for the pathology to come back and then you meet with an oncologist who decides, based on the pathology of the tumor and the lymph nodes, what the next step will be, and if chemo is recommended, he decides what the chemo treatments will be. I needed to know sooner than later what my possible treatments would be. I needed to find out just how long I would need to be pumping milk and if Dr. Newman's scenario was even possible. So I requested to be seen by an Oncologist before surgery. At the very least I needed a time line for weaning my daughter. And I also needed to get my life in order. Before the diagnosis we had made plans to move to Vancouver. We were meant to move on June 1st. The diagnosis meant postponing the move, which meant more time spent with Kurt living in a different city from Indiana and me, and longer spent paying two rents. I needed to get control over my life and the only way I could do that was to assert whatever control I could over my treatment.
In the meantime, I felt I had better at least start weaning Indiana. Three feedings a day was a lot to whittle down to none. I figured if I ended up being able to continue then pumping during chemo might be easier if we were only dealing with one feeding a day, and if I ended up not being able to continue, I needed to be able to stop suddenly without going from 3 feedings to none, over night.
I started by eliminating the nap time feeding which would be easy since Indiana already skipped that one on the days that I worked anyway. It was probably not even two weeks between when I stopped the daytime feed and when I stopped the bedtime feed. I figured the bedtime feed was going to be the hardest so I did that one second. We had already experienced putting Indiana to bed without any breast milk when I went for my bone scan and found out on the day, that I would not be able to breast feed or even touch my daughter for 24 hours. Luckily, Indiana had not been nursing to sleep for quite some time. Our bedtime routine involved nursing and then just rocking and singing a song for a while until she was ready to go to sleep. Then I would put her in her crib and she would go to sleep on her own.
The first official night of not breast feeding before bed came on a night that Kurt and I decided to have date night. Indiana's Grandmama and Grandpapa babysat, and there were no problems with her going to bed without having had milk. It really did seem like Indiana had some idea about what was going on and had decided to be a willing participant in the weaning process.
One of the challenges with the whole process was replacing the breast milk. I categorically refuse to support the formula companies. I didn't want Indiana to ever have formula. But up until this point she really wasn't digging cow's milk. Every time I offered it to her she would take one or two sips and then just let it dribble out her mouth. It took a $22 sippy cup to change her mind. But by the time we cut out the bedtime feeding, she was drinking at least two cups of cow's milk a day and that made me feel much better about the whole thing.
Shortly before my surgery I met with my oncologist. We discussed the time line on my treatments. Without me even asking about the specifics of my chemotherapy it became clear that Dr. Newman's plan would not work. To begin with the plan hinged on radiation happening first, before chemotherapy. But the procedure is actually to do chemotherapy and then radiation. Without getting the radiation first, there is no guarantee that the cancer breast will not have milk in it, and therefore cannot be offered as a "dummy" for the baby to suck on for comfort. I have never been able to completely drain my breasts with pumping or with baby, so there was no way I could confidently pump off all of the milk and then allow her to suckle the dry breast. I finally had to face the fact that my breast feeding relationship with Indiana had to come to an end, much much sooner than I wanted. And in fact, Dr. Attwell wanted to start aggressive chemotherapy as soon as possible after surgery, which meant even before the usual 6 week healing period. If he'd had his way, I actually would have chemotherapy before surgery. But I told him I simply needed that time to finish weaning my girl.
The final feeding was the hardest to wean. For me as much as for Indiana. Since Indiana was born my favorite time of day has always been first thing in the morning when I would bring her into my bed with me and she would nurse and then we would cuddle and play until it was time to get up. Often we would go back to sleep for an hour or so. Even when she moved into her own room we kept up this time, and I was worried about how to continue the fun morning snuggle without having the nursing part.
The final wean came very organically. During my recovery from surgery Indiana and I were staying at my mom's house and one morning, quite naturally with no planning, gramma came down stairs and got Indiana and took her upstairs to let me sleep some more. Indiana didn't seem to notice the lack of milk - she was really only nursing for a few minutes by this time anyway.
During this time of weaning Indiana, I sometimes regretted having done sign language with her. "Milk" was the first sign she learned and she would occasionally sign for milk when I was not able to give it to her and those were the hardest times. I had taught her this language so that she could ask for the things she needed. I had been very carefully to always give her milk when she signed it, in order to enforce the language. Now here I was denying her.
For about two weeks Indiana seemed completely oblivious to the milk having stopped. We've been able to continue to have our morning snuggle in the bed, and when she starts snooping around for milk that is when I ask her if she wants some breakfast, and we get up. For a while she would try to help herself to milk and get very upset and cry when I denied her. But she has started laughing, now when I turn her down. She still occasionally tries to go for the nipple, but it's our little joke now.
I still feel a bit sad that our breast feeding relationship had to come to an end so early. In the end we breast fed for over 14 months. Kurt and I had decided before the diagnosis that we were not going to have any more children, and that decision is pretty much out of our hands since chemotherapy will probably render me infertile. But the only thought I've ever had regarding having another child has been so that I can finish my breast feeding journey. But that is a silly thought. My only real regret is that I don't have more pictures of Indiana and I breastfeeding.
As of right now we have not breast fed for nearly four weeks. I had weaned gradually enough that it took about a week for my breast to become engorged and the ducts to become a bit blocked. I had to pump off the milk in the shower with the warm water running on me and massage out the plugged duct. The second plugged duct came two weeks later and as of right now there is little to no milk left. Indiana still tries to go for the breast once in a while, but doesn't seem bothered when I deny her.
