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.

Some more Breast Feeding resources:

La Leche League of Canada

Kelly Mom

CPO Breast Feeding Support Forum

I’ll try to be brief. I’ve already stayed up later than I intended, but a side effect of one of the anti-nausea drugs is that it gives me a bit of a buzz.

Chemotherapy session number one took much longer than I expected. I knew that there would be a big preamble before getting down to the injections, but the drugs themselves took longer than I thought.

I arrived at the BC Cancer Agency at quarter to one, with my mum. We were shown into the chemoRoom by my chemoNurse, Barb, who asked if my mum was my friend. Mum liked that. The chemoRoom at BCCA is not like ones I’ve seen in videos or in movies. They always seem like these dark little cells, and the patients seem to depressed. The chemoRoom at BCCA is bright, with lots of windows. Outside are lots of trees, so you feel like you are in the middle of a little Gary Oak Meadow. During your chemo you are allowed to eat and drink and get up to pee (towing your IV stand behind you) and there are volunteers who come around with a tea tray and offer you coffee, tea or juice to drink, and a choice of soda crackers or digestive biscuits to eat. Our volunteer, Erma, is probably in her 70s and she was the same volunteer who gave me the tour of the place when I went for my chemoTeach session.

After going through all of the details of what to expect and explaining in detail all of my anti-nausea meds (I have four different levels of anti-nausea pill, starting with the big guns that I take before chemo and ending with regular gravol, which is for use in-between the in-between pill, because the big guns can only be taken every 12 hours, and only for the first couple of days), an IV was started - Barb took a good look at my arm and informed me that we would be feeding my Sea Horse (I didn’t correct her and tell her that it is a Crayon Pony Fish - which of coarse doesn’t exist, except for in the mind of Wes Anderson).

My chemoDrugs are abbreviated as FEC. I remembered the name of it from day one, when my oncologist told me what I would most likely be getting. It’s not hard to remember. I wish I was good enough to remember what it stands for. I probably will by the end, but right now it’s nearly 1:30 in the morning and I can’t be bothered to go find the sheet with it all written down. Basically the three letters stand for the three drugs I’m getting. The “E” is given first, and it’s the worst one. It has the worst long term risks which include a 1% chance of heart damage and between 1 and 2 % chance of giving me leukemia. It also can burn my veins and cause irritation in my urinary tract. And it’s bright red. (The night before my chemo I had beets for dinner. I knew that I might be getting a drug that would make my pee red, and I seriously debated whether I should avoid the beets so that I would know which thing was making my pee red. But Kurt was coming home and he hates beets, so I had to eat them before he came home. The chemo drug made my pee exactly the same colour as the beets. I still don’t know which one is still tinting my urine.) Anyway… The first chemoDrug gets pushed into the IV by hand. Three huge syringes of it. It took about 15 minutes. I had to pee before the third went in. I was told to drink lots of water to flush my system. I think I was doing okay. I peed about 4 times while I was at the clinic.

The second chemoDrug was the “F”. It was also pushed in to the IV by hand. Only there was just one smaller syringe and it was not red. And finally the “C.” It was dripped in over about 45 minutes and made me feel like I had sinusitis. In between each medicine the IV was left to run with just saline so that my vein could be flushed and again at the end. Then the IV was removed and as soon as it mostly stopped bleeding (I’m a bleeder) I was allowed to leave.

My mother and I had some lovely conversations with Barb, my chemoNurse. She worked as a traveling nurse for many years and seems to have had a very interesting life. We talked about animals and how they react to their people going through illnesses - she told us about a breast cancer patient whose husband was blind, and his seeing eye dog would refuse to leave her side while she was getting chemo. She was even hospitalised over night once, and the husband had to go home with a friend because the dog would not leave.

There were three other patients in the chemoRoom while I was there. They all seemed much more subdued than we were, and my mum and I both wondered if we were being a bit too boisterous. Each of the other patients had a companion, but they would just sit and read to themselves.

There was one man receiving treatment for, what I think was stomach cancer. At my chemoTeach session they showed us this device they call a “baby bottle.” It is used for chemoDrugs that need to be administered slowly over a few days. It looks like a baby bottle with a tube coming out where the nipple should be. Inside is a balloon that hold the chemoDrug and slowly pushes it out over two to three days. The patient carries it around with him. The pharmacist who did our chemoTeach session said it’s mostly used for drugs to treat stomach cancer. Many of the odd and unpleasant exceptions to the stuff she was telling us was to do with stomach cancer. Anyway, this gentleman had had 3 bags of stuff hooked up to his IV at one time, and as we were leaving I saw his chemoNurse hooking up the “baby bottle.” I’m really glad I don’t have stomach cancer.

It’s getting a lot harder to tell people about my cancer diagnosis. It’s harder because I have worked through the grief and the anger and the part about it being really really scary. It makes it difficult to tell people this horrible news, that really isn’t all that horrible anymore. For one thing, the cancer is all out. The nodes were clear and the margins were clear and that means it wasn’t spreading and they got every bit of the tumor. So it’s weird telling people that I have cancer, when I don’t and then having to explain that even though I don’t have cancer anymore I still have to go through all the nasty treatments.

I’ve also shaved my hair completely, now. Before surgery I had buzzed it down to about 1/8 of an inch so I wouldn’t have to deal with it when I was laid up or having difficulty with my arm. But I’ve shaved it down to the skin now. I just don’t want to have to clean up hair from all over the house, and I think watching it fall out in clumps would be very unsettling. And it’s weird, because I’ve shaved my head many times before. But for some reason knowing that it is because of chemo makes me a bit more protective of my bald head. When the landlord came to get the rent today I put my hat on. I think I don’t want to make other people uncomfortable with it. It’s totally different if it’s a punk rock thing than if it’s a chemotherapy thing.

There are a couple of big questions that keep coming up. One is the issue of Religion or Faith, when it comes to dealing with a health crisis. The other is the idea of it being a crisis at all.

Several times when people have been wishing me well in my journey through cancer they have referred to “this awful time” or this “terrible thing” in my life. And every time I find myself stopping and dwelling on that. Because here’s the thing, in the first few days of the diagnosis it really did feel like my whole world was coming to an end. I was facing my mortality in a way that I never ever thought I would. I was dealing with the possibility of not being around for my daughter’s wedding or graduation or even her first day of kindergarten. But as I have learned more and moved very quickly through the cancer process, I have come to realize that it’s not an awful time in my life and it isn’t this huge crisis.

For one thing, I have come to realize, in a way that might not otherwise be possible, just how much I am loved. Most people will go through their lives never really knowing. I’m sure everyone has days where they wonder if their friends really do like them, or if they just hang around because it’s easier than finding a new social group. In a situation like mine people seem to flock to your side. And you can tell the ones who genuinely want to help in any way they can, and those who don’t. I’ve heard people say that you really find out who your friends are when something like this happens, and I have found out that all of my friends are truly my friends.

For another thing, I am living in a time and a place when cancer really doesn’t have to be scary. I have access to whatever cancer drugs my oncologist feels will do the job. I have access to a top of the line cancer centre, where emphasis is put on making the patient feel good all the time. And breast cancer really is one of the most studied, most funded, most curable cancers. It’s going to be a hard road, there’s no doubt about that. And I will spend the rest of my life with a little voice at the back of my head constantly asking me if the cancer is going to come back, keeping me vigilant. But as I said when I was first diagnosed, I am not sick. I am not dying. I’m going to be around for a long time. I also count myself very lucky that I am not in any real pain, and I will not be. I got a message from one of my cousins in response to one of my blog entries. She told me that my writing reminded her of her own struggles with her health. My cousin, Darcy, spent most of her twenties and a portion of her early thirties in a great deal of pain. I think she still lives her life in pain. My brother told me that the final diagnosis was junior arthritis and rheumatoid arthritis, which resulted in her having, just about, every joint in her body replaced. Her shoulders, hips, knees, wrists, ankles… I didn’t see her at all during the time that she was struggling with her health. I think the last time I had seen her she was in grade 11 or 12. She played basketball. She was tall and beautiful and as the youngest girl in the family, I always really looked up to her. The next time I saw her was at my brother’s wedding. I was shocked when I saw her. While my memory of her may have been based on an idolized version from the mind of a twelve year old, there was no denying the impact the years of illness and the many many surgeries had caused. She was much shorter than she had been and her body looked so frail. I cried. I remember feeling grateful that a whole group of family members were all converging at once, and it took me a while to get to Darcy through the crowd. Because I could not help but weep, and I didn’t want her to see that.

When Darcy told me that my fears and feelings about surgery reminded her of her own struggles, I realized that what I was going through was small in comparison. I knew that very little of what I was to experience was going to cause me physical pain, and that in a matter of 6 or 7 months the whole thing would be over with. I began thinking about people who had been through much harder things. Like my friend, Kim, who lived with failing kidney’s for years, until last year, unable to find a donor to provide her with a healthy kidney, her mother donated one of hers. Kim was rarely able to eat a meal that did not make her ill. She couldn’t enjoy a Christmas dinner or a pint of beer without paying for it later with pain and sickness.

So now, when I start chemotherapy next friday, I will keep these women in my mind. Women who suffered far more than I will, with no certainty that it would ever get better, and still with no real chance of fully recovering. If chemotherapy gets bad enough to make me want it to stop, I will think of my cousin and my friend and know that I can get through this. I will know that there is an end in sight. And I will know that the pain or the sickness is me beating the disease, not the disease beating me.

Finally, I have been thinking about Faith and Religion. I am not a religious person. For the most part I think organized religion is the cause of most of the worlds problems. Often we hear about people battling an illness turning to religion to get them through. Many many people have told me that they are praying for me, and I have to say I am always a bit uncomfortable when they say that. Sometimes I am tempted to say, “don’t do that.” Without getting to deep into a theological rant, here’s what I generally believe about the “god” with a capital G.

People have heard me say, before, that I believe in God the way I believe in Santa Claus. And here’s what I mean by that. Lots of people give to charities at Christmas. Often, it’s the only time they think about the homeless or low income families. Quite often it’s the only time they ever think about spending time with their own families. But once a year for about a month people; buy presents for people they don’t even like; purchase extra groceries to donate to the food bank (but only if there is a bin at the grocery store, so it is convenient), they might sponsor a family or attend charity fund raisers. But most people, only do this at Christmas. They do it “in the spirit of the season.” They use Santa Claus as a reason to be nice to other people.

I believe that God is the same way. People who believe in God, who believe that God makes good things happen, also do nice things because God wants them to. Addicts who get clean and say that God helped them do it, are using God as an excuse or a reason to get clean, when in fact they are the one who did it. People who volunteer because their religion or their god requires them to, people who live their lives striving not to sin because God listed the things that were sins - they are basically using God as a reason to be good people. Just as most of us use Christmas as a reason to make a donation to the food bank (when we otherwise wouldn’t), people who believe in God use Him as a reason to not be assholes. Which ultimately is fine. (Except for when they are assholes about it.) I’ve come to realize that, while I have spent much of my life viewing religious types as kind of gullible and stupid (to be honest), I really shouldn’t fault people for having a reason to be good. I often feel like I want to explain to them that they can just be good on their own account, they don’t need God for that. But what’s the point?

Basically, I see God and the Devil as metaphors. God is a metaphor for anything good that happens in a person’s life or for anything that seems unexplainable - even if there is a perfectly rational explanation. Earthquakes, tornadoes, floods - these are acts of God. A person has a baby when they were told they couldn’t - God did it. I once had someone tell me that God led her to drive up island the very weekend that her car broke down because He wanted her to get a free car given to her by a friend. (Maybe God should focus on the important things, like children dying of AIDS in Africa.) And when something bad happens to us, it is supposed to be God testing us.

The Devil, on the other hand, is a metaphor for the evil things that men do.

And perhaps the reason for laying all this blame and credit on these deities, is so that we can avoid any real responsibility. Because if I fall off the wagon I can blame God or the Devil and avoid taking any responsibility myself.

Ultimately it is organized religion and Dogma that prevent me from believing in any kind of God. Because for centuries, organized religion has been telling us how to live our lives and telling us that God said that our lives were to be a certain way. And in the end I can’t believe in a God who cares more about who is in my bed than he does about children killing each other in the inner cities of America. And I can’t believe in a God who apparently, wants us to continue to populate this already over populated earth at the expense of this earth that he gave us. But mostly I can’t believe in a God who made cancer.