Mommy's Dying

Someone asked me to share more about my experience of being a mom with advanced stage breast cancer, and for me, it's weird because the two are not mutually exclusive. In my situation, I haven't fully gotten to experience being a mother without also being a cancer patient. My son was born in September and I got my official diagnosis in December of the same year. However, I had found the lump back during pregnancy and at that time… I just knew. My dad's mother had died of breast cancer when he was only three years old. So I thought, and at times still worry, that history is repeating itself.

When your child comes, you have this natural instinct to put them first. Your life changes completely, and suddenly they are the center of your world. But when you're diagnosed with cancer, your life also changes completely and you're told that you have to put yourself first. You're told that it's not selfish, in fact, that it is necessary in order to survive.

I grapple with this every day. How can I put myself before a helpless baby? I've had to ask for a lot of help and accept that in my world, it indeed takes a village. But as a society we've lost that communal spirit. I've called on family and friends, but they are scattered across towns and states, and also have lives of their own to attend to. I wasn't about to spring for a live-in nanny, and with my husband working, I often find myself alone; I have no tribe. 

It often surprises people when they learn that despite the fact that I am on medical leave from work, I continue to drop my son off at daycare. "Oh you're not working? Well at least you get to spend all your time with your son," they say. Part of putting myself first though, means being able to lay down when I get extremely fatigued; which comes on unexpectedly and inevitably when the little one is raging on. It means being able to feed myself... not shoveling in whatever I can while also feeding him, but actually nourishing my body so that I can continue to have energy. It means not being there for him 100% of the time, but giving him 100% of my attention when we are together.

I have come to rationalize that this is in his best interest too though. By continuing to go to daycare, he continues to have his routine, which is important. I am not throwing off his schedule by my endless doctors appointments, scans, bloodwork, treatment. He is also getting a lot of social interaction with other children his age, something I probably would not have been able to arrange in my present state. As a result, he is a very easy-going, out-going little man. 

Still, it breaks my heart every time I drop him off. I feel ashamed and burdened by guilt, feeling like I am letting someone else raise my son. Even worse, given my prognosis, it forces me to think into the future when it is likely that I will be out of the picture completely.

I try to fill our time together like any other mother does… we go to the zoo, to museums, we play in the backyard or at the community pool, we read books and watch cartoons... I try to stay active, to make memories. But the reality is, he's not even a year old so I know he won't have any of these memories. I love my son and am so thankful for him every day. But there's always a dark shadow cast over us. Will he remember me? Will it be better for him to lose me and to have never truly known me; Will that somehow be easier?

So far in my cancer experience, I've met several other mothers. They've shared how difficult it is to explain to their children what's going on. I think about what I will say to my son when he is old enough, given the chance. For now, I wonder whether I should write a letter or fill a journal with advice and my hopes/dreams for him. Every time I try to put pen to paper I come up short...what kind of legacy do I really even have to leave behind? It's a lot of pressure staring at that blank page thinking of the person my son will become, and whether he'd be receptive to whatever it is I leave behind. And then I feel immense sadness, not for myself, but for him and what he will have to endure. 

In between the moments of sadness, I hold fast to feelings of overwhelming, tremendous joy. Yes, I have cancer, but I also have this beautiful gift. My son is healthy and he is happy, and for now, all he knows is love. His love and light bring me so much peace. It's crazy, but this baby has brought so much calm into my life. Having a child, and having cancer, is supposed to be utter chaos. You're constantly searching for your "new normal." But with my little one, we threw normal out the window and have just been free to simply be. It's working for us, taking one day at a time. Selfishly though, I don't want days... I want years. I want a lifetime together.

In my heart of hearts, I know that's what all parents want, so in writing this, I don't have any grand revelations about "what it's like." I go about parenting as best I can, with good days and bad, but am constantly looking over my shoulder. I hold myself in a sort of limbo, not sure whether I am dying or truly living, all the while vacillating between anxiety and excitement for what the future holds for my son. 

For additional information and breast cancer awareness please "like" and follow Jenny B. vs Breast Cancer on Facebook at www.facebook.com/JBvsBC.

To make a donation in support of Jen and her family, please visit www.gofundme.com/JBvsBC.

Body Talk

"You actually look really good bald!"

Many women struggle with body image as a result of their cancer diagnosis and treatment. This struggle isn't isolated to one moment in time; our feelings about our bodies vacillate throughout treatment. I for one, am not usually offended by comments like these and choose to take them how they were intended-- as a compliment. But that doesn't mean that every single day I feel confident enough to do so. So, unless we bring it up, those comments are probably best kept to yourself.

Lately, I've been thinking a lot about the course of events over the past year and I can't help but relive conversations that got me worked up. I think back to last August when I was pregnant; very pregnant! I was eight months and about to burst. The commentary was never ending and, at that point in my pregnancy, extremely unwelcome. "You're huge!" A coworker would be sure to point out every morning as I walked to my desk. "Sure you're not carrying twins?" Another would add. Over and over and over again, any and every where I went. "Bet you can't wait to get him out of there" total strangers would say. "Any day now, huh? Bet you're miserable." Thank God I was put on modified bedrest and worked the last month leading up to labor from home or else I probably would have snapped!

I'm sorry, but I just have to point out that both those coworkers were morbidly obese women. I didn't call them out on it daily because, who does that!?! Why is it ok to allow the pregnant body to become public property? I've found out it didn't end with pregnancy at all...my postpartum body was also up for discussion, as is now my cancer-filled body.

You see, like pregnancy, having breast cancer is a public event in our society. Everyone has their two cents to chip in -- what to eat/not eat, how to induce labor/cure your disease. What I find particularly interesting (more like messed up) is how fascinated people become with the physical body, and have no shame in shaming you.

With cancer, even the well-meaning comments draw attention to a deficit and have the potential to become patronizing. I hear all too often things like "But you don't look sick" or "Your boobs look fine, I would have never known you had surgery!" And it takes me right back to how I felt when I was pregnant with people, who I barely knew, making a public spectacle over my body. Sometimes it is really awkward, but I really am ok talking through these things...hence why I am blogging about it. I am all about transparency, advocacy, and awareness, but there's a fine line between caring and creepy. And that line is crossed when people think it's somehow ok to get physical-- If you are not my doctor, it is not ok for you to touch me.

Obviously, family and friends will be better attuned to what is appropriate and when, so I am not really talking to them. I'm talking to the same people who see a pregnant lady's baby bump and suddenly get all handsy. These people, many of them total strangers, come out of nowhere and see nothing wrong with their behavior. Because, why? Her belly being taken over by a baby parasite somehow means it is no longer her belly?! Just like a body being ravaged by cancer and chemo suddenly does not belong to the autonomous individual but rather the patient who is just supposed to allow the world to comment on and touch her? Let me assure you, rubbing our bald domes is not going to bring you any kind of luck or help you ward off your own risk of cancer.

It's one thing to comment on how fast my hair is growing back. It's another thing entirely to reach out and touch it. Often, I will be open to talking about it, and share with you how surprisingly soft it is. At which point I might very well indeed invite you to rub my head. But unless the invite is there… Don't do it! Some days are just not good days, and my bad mood is likely to be exacerbated by you petting me like a dog. Similarly, when I had the big baby bump, I did not like being felt up. Yes, I loved rubbing my belly, but that didn't mean I wanted you rubbing my belly. Unless I specifically said, "get over here, he's kicking and I'd like you to feel this!" it was not ok. Nowadays I might say "Eh. If you're curious you can poke my boob right here and you'll see how an implant feels." I don't see my breasts as sexual at all anymore, but they are still a part of my body, so it is my choice who touches me, where they touch me, how they touch me. I will tell you when and where is appropriate. It blows my mind that someone would think it's ok to touch my breast simply because I have breast cancer. The disease does not diminish the fact that I am still a person. My breasts may be fake, but I am very much real. And I would not expect you to be ok if the roles were reversed and I started feeling you up, so why should I just take it?

I think there's this notion that we need to be able to laugh at ourselves. And believe me, I do! When pregnant, I was very much aware of the miracle growing inside me but also how gross and funny it all was. I was therefore a little bit more open to sharing that with others. Having cancer is no miracle. Thus, I am more guarded with my physical self. My mantra, that I've mentioned in previous posts, is "I am not my body." How I appear outwardly is only a slight indication of what's going on internally. When someone rubs my head or pokes my implant, without warning, they're triviliazing everything that I am going through and grappling with daily.

It's crazy but I have to remind people-- like you'd remind a child in an antique shop-- to "look but Don't Touch!" I'm not afraid that you're going to break anything, though with a compromised immune system, I do have to wonder where your hands have been. Just do like they teach you in kindergarten and "keep your hands to yourself!"

For additional information and breast cancer awareness please "like" and follow Jenny B. living with MBC on Facebook at www.facebook.com/JBvsBC.


To make a donation in support of Jen and her family, please visit www.gofundme.com/JBvsBC.