A shitty situation

I poop with the door open. Those closest to me know this to be true both literally (I've had some of my best conversations with siblings while on the shitter) and metaphorically speaking. Its just how I live my life… I'm very open and eager to share; sometimes perhaps too eager. 

My cancer has progressed after only a few short months of being NED (no evidence of disease). I feel paralyzed. Stuck. After another liver biopsy and lots of morphine, I am bound up. No, seriously you guys, this is day four of no bowel movement. You do not know distress til you cannot crap. 

Like Dr. Oz and so many others, I measure how I'm doing by how I'm pooing. Right now, nothing is moving...there's no other explanation, I must be dying.

Or I'm just constipated, ok fine. But it feels like dying. Have you ever almost passed out from pushing so hard on the pot? This is one of the many things cancer patients probably don't talk about. The struggle is real. 

It's such a production, trying to produce a good BM. I've put the heating pad on my abdomen, drank so much coffee, eaten all the apples, been keeping up with stool softeners, have been pacing back and forth across my house, and have now started drinking magnesium sulfate which might as well be called colon blow. 

I've even resorted to talking to my turd. We're in the bargaining stage..."you come out of there and I promise from now on I'll stick to an all fiber diet!" 

I'm jealous of my infant son whose already managed to soil three diapers within a four hour time span. All that mess with minimal effort...must be nice. 

With the holiday season upon us, I can honestly say all I'm hoping for is to get this Yule log outta me. Then and only then will I be ready to move forward with my shitty (heh heh) diagnosis. 

In the Pink

I haven't written in a while and it dawned on me today that I have perhaps been subconsciously avoiding it. October, as I am sure you're well aware, is "Breast Cancer Awareness Month," and with all the pinkwashing and pink bashing, I was not sure how to cut through all the noise or if I even had anything of value to add. I also did not think I could write coherently because I have all the feels this month! The 11th was my 31st birthday; one I honestly doubted I'd live to see. The 13th was Metastatic Breast Cancer Awareness Day -- that's right, for the 31 days of Breast Cancer Awareness Month, the terminal kind gets one measly day. Oh, and that day was over shadowed by the bro-tastic No Bra Day. So...mentally I've been a little distracted and torn between trying to advocate and trying to maintain my sanity. 

I am also having a difficult time because what I’ve been wanting to write about for a long while now is on the subject of sexual health and intimacy. I wanted to write this blog post, like so many others, with humor to try to make it less awkward. Try as I might though, I have been unable to be witty, clever, or funny in any of my posts because simply put …breast cancer, and what we as patients have to endure, is not a joke.

Yet, this month I have been inundated with “save the ta tas” and “love your boobies” type slogans. Breast Cancer “Awareness” is a multi-million dollar marketing gold mine and everyone is cashing in on the gimmicks that trivialize and sexualize the disease. I am adamantly against these campaigns and the notion that “any awareness is good.” Rather than point out why these campaigns are damaging and damning to the cause, however, I want to go ahead and talk about sex; the real unsexy truth about women’s health and intimacy through cancer treatment.

As a young woman, as a person, I very much still want to have a sex life. I just turned 31 and for the past 6 months or more I have had zero libido. I have also found a lack of resources or willingness of medical professionals to have a discussion about it. And that is not ok.

In many ways, my cancer diagnosis and treatment have pushed my husband and I to become much more intimate. We hold hands more often, we look each other in the eye longer, we talk about everything, and at night we go to bed much earlier than we used to just to hold one another; to feel skin against skin. And for that, I am grateful. While our intimacy has improved, however, our sex life has suffered greatly.

Before cancer, we were very affectionate and had a super healthy sex life. Even after having the baby, we still made time for one another and that time often included sex. After my mastectomy, it was a little jarring at first, but soon enough we were doing just fine. My drive came to a screeching halt when my ovaries were removed and I began hormone therapy.  Since my cancer is ER+ and very aggressive, the decision was made to use an aromatase inhibitor (femara) coupled with ovarian suppression. In other words, estrogen would be cut off or virtually removed from my body to stop the spread of disease.

This treatment option showed very promising results in terms of survival rates, but it is not enough to survive. I want to thrive. To me, that means managing treatment and side effects to allow for quality of life. And yes, I see sex as a healthy, natural part of that life.

The side effects of my treatment have been chronic muscle and joint pain, osteoporosis, and menopause. My body hurts All. The. Time. As if that weren’t enough of a turn off, being slammed into menopause has further drained me physically and emotionally. I experience mood swings and hot flashes/night sweats regularly, though my oncologist has assured me that these side effects should diminish over time. Unlike hot flashes though, I was told to expect vaginal dryness and irritation to worsen over time. No estrogen means no self-lubrication, which leads to extremely painful intercourse. The most effective moisturizers and lubricants on the market contain estrogen…which I am advised not to use. I have found Replens to be somewhat helpful (for anyone in a similar situation), but it’s just one more thing that I have to remember to do and my mental fatigue often gets the best of me. Also, it does nothing to help with the lack in libido.

In the last six months, I can think of two, maybe three times that my husband and I were able to have sex that didn’t end in tears. When we try, my husband almost always has to initiate and I know that is not fair to him. I’m perfectly comfortable with my shirt off, but it is always disheartening when he touches my chest and I do not feel a thing. When we start having sex, I feel everything though, and it hurts. There’s a searing, burning, pain and I cannot stand it. Sometimes I’ll try to force myself to work through the pain, but I often roll over and cry instead. I love my husband and I hate that I cannot physically show him that love.

Enter the month of October, and rather than feel a sense of comradery with all my sisters in pink, I strangely feel more isolated than ever before. I get anxious when I go to stores and see all the pink merchandise and the employees sporting the ribbons. The past few weeks, I have been reliving the news of my diagnosis, the whirlwind of chemotherapy, the surgeries that left me feeling hollowed out. It’s like PTSD. It’s no wonder that sex has been difficult to impossible. But it’s so much more than a mental block. There is a very real physical/physiological problem where my body just does not work.

At every visit with my oncologist, I fill out a survey that asks for my level of pain and distress and then asks me to check off certain things that may be causing the pain/distress. Every time I have checked off “sex/intimacy” as an issue and every time the medical assistant shoves the sheet in my chart and it’s never seen nor heard of again.

Last week I had decided that it was time to get vocal about my concerns. I had recently attended a conference hosted by Living Beyond Breast Cancer where I learned about Mona Lisa Touch and I wasn’t going to leave my oncologist’s office until I had a referral in my hand! He surprised me and did one better… he pulled out his cell phone and called the OBGYN’s office that specializes in this new laser therapy and got me in to see her, that day…right after my appointment with him.

And so we talked…about shooting lasers into my vagina. Not a conversation I thought I would ever be having. Mona Lisa Touch uses lasers aimed at helping the cells make more collagen, which corrects vaginal atrophy and aids in the production of natural lubrication. The doctor explained that it may not make my libido come back, but it is a start. I would need three treatments, spaced six weeks apart, and then one treatment annually for the rest of my life.

In addition to not being able to help with libido, there is another downfall to this: Mona Lisa Touch is not covered by insurance. I’ve been having a hard time accepting this, especially this month. It feels like such a slap in the face to be one of the thousands of women who are made into sex objects by slogans like “save second base,” and yet (a) no longer have “second base” and (b) not have the ability to round the bases to make it home. Not to go all “femi-nazi,” but I’m sure if this were an issue with men there would be more options that would indeed be covered by insurance. A certain little blue pill comes to mind.

I made an appointment, telling myself we’d figure out the financials later. I was excited and I was hopeful. Then, slowly but surely, doubt started to creep in. What if it wasn’t really the right treatment for me? What if it didn’t work? Maybe I should just be content to live in a sexless marriage, so long as I’m living, right?

In a moment of self-defeat, I canceled the appointment. That was a week ago. It’s something I plan to discuss with my doctors further, but for now I need to let it go. I received news that my white count is critically low again and I am neutropenic. I have to stop my Ibrance (which I put so much stock into and convinced myself would be my ‘cure’) and hope my body can rebound. Then maybe we change the dosage or change the medication to something else that may extend my life.

This month, all I can think about is how I am on borrowed time. I want to live and laugh and love as much as possible. I want to do all the things “normal” people do, including have sex with my husband. But when I go out and I see all the pink…I’m reminded that I am different; that everything is different. I’m writing this because I think it’s important that people know my reality, our reality, beyond the pink party raging on all over the damn place. Yet, I still don’t feel like this post is adequate. In my writing, in my bedroom, in my day to day life I feel completely …impotent. But I know this is the first step…talking about it. Step two, to be determined. Stay tuned.

For additional information and metastatic 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.

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.

Tips for the Caregivers

Today I was approached by one of my community page followers who asked for advice on how she could help a friend who is going through cancer treatment. I could tell from her message that she cared deeply for this woman, and she said that she just wanted to see her friend smile again, but wasn’t sure how to approach her.

That’s a really tricky thing for a lot of people – finding ways to put all your well intentioned words into action. If you’re not sure how to approach us, just be honest. We understand that up until now, you didn’t have a script for how to be a caregiver any more than we have a script for how to be a cancer patient. It’s ever-changing and it’s hard on everyone involved. So go ahead and admit that this is hard on you too; you’re entitled to those feelings. And so are we, which leads me to my first bit of advice:

Don’t feel like you have to make us smile.

We appreciate your support and efforts to cheer us up, but sometimes we just need to be “in it.” For me, being “in it” means owning my feelings and working through them rather than dismissing them or pretending that they don’t exist. Call it a pity party if you must, but I have cancer so it is my party to throw dammit…and I’ll cry if I want to! I love a good cleansing cry from time to time, but I also love the friend who lets me cry instead of insisting that I need to be chuckles mcgee all the time. Like everyone else, we need to be allowed to have our bad days as much as our good ones.

That being said, sometimes the bad days are really, really bad. Living with cancer can be chaotic, especially when our emotions are running rampant. For me, focusing on the things I can control often helps; checking things off my to-do list, for example, gives me a sense of accomplishment. Often during treatment, however, cancer patients just don’t have the energy to keep up with that stuff, and the never-ending to-do lists start to become extremely overwhelming. Which is where a solid support person can step in. Second bit of advice:

Be specific about what you’d like to do to help—ask for our to-do list or create one and delegate among your inner circle.

When I was diagnosed, everybody and their brother came out of the wood work with an “anything you need!” mentality. The sentiment is sweet, but has little follow-through without additional directives. Cancer patients are dealing with endless appointments and chronic fatigue; we don’t have the energy (or sometimes even the cognitive capacity) to delegate roles for everyone that says they want to help.

I myself am a stubborn woman, and I often don’t know how to ask for help, let alone define what form that help should come in. The friend that says “hey lady, I’m coming to scrub your shitter!”  is a rare one indeed, and preferred to the one that says “Let me know what you need” because I will never let you know that my shitter needs cleaned; but if you show up with a scrub brush in hand I will be eternally grateful. Sweeping, mopping, dusting, taking out trash, doing the laundry…these are all things you can help with, and you can do as many or as few as you’d like. The key, again, is to be honest with yourself and admit that you also have limitations. You do not need to take on everything and spread yourself too thin. Your relationship with us could suffer as a result. The last thing we need is a caregiver who comes to resent us because they bit off more than they could chew. Instead, delegate. People all say they want to help…a good primary caregiver is someone who enlists additional family and friends and gives them tasks.

If cleaning isn’t your forte, perhaps making a meal would be a better way to help out. Who doesn’t love a home cooked meal that can be ready in minutes!? I recommend checking whether your friend/family member has any dietary restrictions or is put off by certain foods though. Much to my chagrin, while undergoing chemo I was completely turned off to bacon... I know right!? The injustice of it all! Just the smell of it made me wretch. But that brings up something most people don’t know…you should actually steer clear of making favorite dishes during chemo. Chances are if your friend/family member gets sick, that food will be ruined for them for good.

Not a good cook? Offer to take your friend/family member out, or, if they have little ones, offer to babysit so they can go out. Third bit of advice:

Find ways to provide a change of scenery.

Between childbirth, breast surgery, chemotherapy, more ladybit surgery, more chemotherapy, back surgery, hormone therapy, and radiation therapy…I’ve spent a fair amount of time in the hospital, in my bed, or on my couch. I did some serious binging on Netflix, which has its time and place, but is no substitute for human interaction and actual activity. After staring at the TV and the same four walls for so long, those walls started to feel like they were caving in on me. Plus, all the aforementioned housework began to mock me. I would see a dirty dish and completely flip my shit. Didn’t I just wash you!?

I’d never been one to invite myself anywhere, but I now jump at the chance to get out. Anyone who says they would like to visit, I insist on going to them or meeting up… preferably someplace with a patio so I can see the light of day. As a caregiver, there’s nothing wrong with simply “kidnapping” your friend/family member and treating them to a change of scenery. Some things to keep in mind though if you’re going for the “surprise! I’m taking you out of here” approach – fatigue can sneak up at any time so an all-day event might be out of the question, chemo and radiation make being in the sun a bad idea so sunscreen and a giant floppy hat are a good idea, patio = awesome until some jackass next to you starts smoking so I’d recommend a table closer to the establishment where hopefully common sense and maybe rules about distance to the building apply.

If you’re offering to babysit, really commit to it and give your friend/family member as much time as possible. My cousin recently babysat for us and was gracious enough to let us stay out as late as we wanted…movie night turned into movie night and an ice cream social. It was fantastic! I forgot for a little while that I was a cancer patient, and instead was able to be a wife, out on a date with her husband. Cancer patients have a heightened sense of just how fleeting, and precious, time can be. It is one of the greatest gifts you can give us – time to go out and live our lives!

For your friends/family members in active treatment, they may not be able to get out yet. Fourth and final bit of advice:

Meet us where we are! Speak life, walk love.

After my mastectomy, I was feeling pretty numb….though that could’ve been the narcotics they gave me. I had several drains hanging off my body and so much gauze and tape. I wasn’t permitted to shower and my range of motion was shit anyway so my hair wasn’t getting washed (what hair I had left after deciding to take control and cut it all off prior to chemo taking the rest from me). Needless to say… I looked a hot mess and wasn’t in a hurry to go out in public.

My sister came over a lot to help out and one day she randomly decided to give me a “spa day.” We put on face masks and she gave me a pedicure. I can’t remember what color she had picked, but I do remember feeling pampered. And pretty. And human. It was such a simple, sweet gesture that went a long way.

So maybe grab some polish and get a little girly. Bring popcorn or some other snack and put on a chick flick while you’re at it. Maybe make some mocktails-- I really enjoy a good virgin mojito and find the mint really soothing, especially during chemo.

The point is to just be there, in whatever capacity feels right for you both; to be the reminder that while sometimes it may not feel like it, life does go on. What we cancer patients want most is to live. But it is not enough to survive, we want to thrive! A good caregiver, a good friend, is someone who can help us sustain quality of life. Of course, this will mean different things to different people, but with patience and an open dialogue, you will be able to help in more ways than you may ever know.

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 visitwww.gofundme.com/JBvsBC.

Mommy Mode

Today starts week two of not being able to hold my son. I can “see the light at the end of the tunnel,” and yet my entire being aches for those baby snuggles! Last week, I moved forward with my breast reconstruction. Those annoying tissue expanders came out, and I got my squishy implants. The pain has been very minimal, especially compared to recovery post mastectomy. Still, I am not permitted to lift anything over 5 pounds. My son, the tank, being one of those heftier things.

I debated making this blog post about the reconstruction surgery to educate folks on how it is different than augmentation and how it has affected me, but instead I need to shift focus from the cancer and all the treatment and surgery and kick it into mommy mode. I’ve been talking to a lot of my fellow moms recently and I have some insight to share. A few “ah-ha” moments, if you will.

Most mothers cringe when they hear that I can’t hold my baby boy. I shrug it off, explaining that it’s only temporary, and then they proceed to tell me how strong I am. Which I also shrug off because honestly, I don’t know how to respond. This weekend though, it dawned on me that I don’t know how to respond to a fellow a mother who tells me how strong I am, because I do not see myself as any stronger or braver than she. As moms, we endure any/all things for our children. Isn’t that the epitome of strength?

In regards to not being able to hold my son, I think the sadness comes in knowing that our snuggly days are limited. Eventually, he will not want to be held. As patient as I try to be, I know that this phase will be over too soon. Cancer or no, I think that is something all moms can relate to. I have several mommy friends who shared that their babies never really wanted to snuggle, or that as soon as they started sitting/crawling/standing they were constantly on the go and no longer wanted/needed the safety of mommy’s arms. We simultaneously cherish and lament these milestones!

When my little guy started pulling himself up more, I knew it was time to lower the crib mattress and remove the mobile. My husband and I were very casual about it, and he set the mobile aside with the rest of the things that the baby had outgrown. The following day I was tidying up the nursery when suddenly the pile of stuff hit me like a tidal wave. He’ll never again be that small… I’ll never have another child that small… I’ll never have another child. I had hoped to be one of those moms bitching about an over accumulation of baby stuff in storage for “when the next one comes,” but instead, looking at all the stuff set aside that needed to be dealt with, I finally had to accept reality (or what felt like accepting defeat) and admit to myself that it was time to donate this stuff and keep moving forward.

I picked the mobile up off the pile and, standing in the middle of the room, in an empty house, in what felt like an empty universe, wailed like a fucking banshee (sidebar…I told myself I would try to avoid cursing in my blogposts and work on a better vernacular, but really, in describing that moment, nothing is more accurate or satisfying than the “F word.” Plus, I did just follow it up with “vernacular” so that probably counts for something).

I wailed and I screamed, tears streaming down my face, until I collapsed into a soggy puddle on the floor. My dog, Tukus the WonderPuggle, charged into the room and began licking my cheeks. Moments prior, he hid on the stairwell with his ears low, not sure what to make of my raucous outburst.

And then, just like that, I started laughing. How ridiculous must I look, I thought. And yet, I know I am not the first or the last mom to ever have such a break down. Every emotion just comes so much easier, so much more intense for me. At first, I attributed this to my hormone therapy. While I am sure that’s a contributing factor, I believe that the raw vulnerability (and intense strength you can achieve from being so real) came several months back when my son was born and just continues to grow as he grows. This is not limited to a mother with cancer, but something I am willing to bet all moms experience.

Just the other night I was having dinner with a close friend who recently went back to work after maternity leave. We talked about the trauma of childbirth and how it stays with you long after the physical wounds have healed. With the cancer diagnosis postpartum, I went on to wreck additional havoc on my body, but I knew that she could relate to a lot of the same feelings from that one shared experience. We were talking about the physical changes and also how stress can really affect a nursing woman in particular, when suddenly her voice caught, and I knew what she was going to say before she did. My heart broke for her, and all I could do was hug her and tell her, “I know.” Sometimes our bodies just betray us.

I made some joke about how postpartum depression is actually more like post-traumatic stress, but really, I wasn’t joking at all. And I could tell that she wasn’t either. Tears started to well up in her eyes again as she spoke about the transition going back to work, how everything is the same and yet, she is not the same. Cancer patients talk about this a lot too; some like to call it the “new normal,” but there’s nothing “normal” about what we go through and the constant heightened anxiety that we live with. I think moms also get a taste of this, I really do. With my stage IV diagnosis, I have a very heightened sense of my own mortality, but I also fear for my son like other mothers do for their children. We have to be ever vigilant, on constant guard. It’s fear, but fear that comes from such an intense place of love.

Yesterday, yet another one of my mommy friends and I were talking about how nice it is when they start sleeping through the night. And then she told me that she still doesn’t ever get a full night’s sleep because she periodically needs to checks in on her son, just to make sure he is breathing. And I smiled and said, “I know.” I do the same thing.

Will that ever go away? I’m not sure that it does, but I am sure that it’s all worth it. With a smile on her face, she started to tear up and to tell me how strong I am and how she can’t imagine what this must be like. And that’s when it hit me, and I told her, “Sure you can. I am strong because I have to be strong… you’re a mom, so you know.”

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.

Time is Fleeting

The very first book I read on the subject of breast cancer was a memoir in which the author talks about her year after diagnosis as a “wash.” She said it didn’t count. This was her way of accepting her diagnosis and everything that comes with it; the endless scans, bloodwork, doctor’s appointments, surgeries. I tried to look at this year like that, but I knew I couldn’t.

How could I when this was the same year that my son was born? As a new mom with a stage IV diagnosis, it’s hard to be so dismissive of my time. This year cannot be a wash because this might be the only year I have left. With that kind of thinking comes this extreme pressure to live every single moment to the fullest, but what the hell does that really even mean!? And how the hell do I plan ahead for my family's future when mine is so uncertain.

Lately it’s taken everything in me to try to be mindful of the present and just take one day at a time. I have this persistent anxiety over what I should or should not be doing, and sometimes it’s crippling. Just this past weekend, I flipped out over a slight detour, feeling that the half hour I was off course was wasted time; time that I will never get back. I got so angry and frustrated that I lashed out at my husband. And then I realized that my reaction was all wrong and that I was the only one responsible for putting myself in such a bad mood. I was quick to apologize, he was quick to forgive. That’s how we get through this together; quick to apologize and quick to forgive so that we can move on and continue to enjoy what we can.

My husband is an extremely patient and generous man. I am thankful for him and our strong relationship every single day. Simultaneously, I am also afraid for him. What will my death do to him and how will he cope as a single parent to our young son? It’s a very real concern and yet no one wants to talk about it. Instead people keep telling me to stay positive and “keep fighting.” Can I share a secret with you? As grateful as I am for the daily support and outpourings of love and encouragement, I am so discouraged when I hear things like “you will beat cancer!” Because the truth is, no, no I won’t. Death is a fact of life and metastatic disease pretty much guarantees that it will come sooner than expected. So when I die, does that mean that I just didn’t fight hard enough? Will I be pegged as a victim rather than a survivor?

We use all these war metaphors and slap a pretty pink ribbon on just about anything and say that we’re raising awareness and “fighting” for the cause. But I’m tired of all the metaphors. I’m even more tired of the rhetoric around early detection…especially those idiots (yeah, I’m going to call people names now) who shout things like “save the ta-tas” to someone who has already undergone a mastectomy and therefore did not get to save her ta tas. This drivel does nothing to further research for those of us already diagnosed, suffering through treatment, facing advanced disease.

Despite the ubiquitous pink ribbon, 20% to 30% of people initially diagnosed with early stage disease will develop metastatic breast cancer. The cancer that kills. Yes, we have made some serious strides in breast cancer research and thus treatment options. In the 70s the average survival after a mets diagnosis was only 18 months. Today, the median survival is three years. Call me greedy, but I want more! I want longevity but I also want a sustainable quality of life. I want to grow old with my husband. I want to raise our son together.  Is that really so much to ask for?

The Stones probably said (sang) it best, you can’t always get what you want. Here’s hoping that my mets sisters and I can get what we need…. I implore you to please get involved in a way that can make a real difference. Do some research to know what your dollars go toward when you buy something marketed with a pink ribbon, or better yet, read up on MetaVivor and make a donation that will matter: www.metavivor.org. 

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

Dying for a Cure

“I have nightmare news, you have breast cancer.”

It’s been six months since I heard that sentence. For the most part, it’s been surreal. When I found out that the cancer spread to my liver and bones, however, those words became very real and suddenly felt like a death sentence. The nightmare has become my reality and as a new mom, I find myself struggling to celebrating life while also starring down my own mortality.

I don't want to be negative, but I have to be honest with others, and especially with myself...a stage IV diagnosis is grim. I am finding though that conversations around it often feel watered down. Most doctors, for example, no longer refer to stage IV patients as terminal. Instead, they use terms like advanced disease and chronic illness. Even in the breast cancer community, the focus is very much on the survivor/warrior archetype. I appreciate the power of positive thinking, but at the same time, I cannot ignore the truth: I will be in treatment for the rest of my life, and I will either die from cancer or with cancer. 

Every day, 108 women die from metastatic breast cancer in the U.S. alone. I don't want to be another statistic. I don't want my husband to be a widower and a single parent to our son. It’s frustrating to feel so powerless. I guess that’s the best word to describe how I felt when I learned that the cancer had spread; I was frustrated and to be really honest, I was frustrated with myself. I had done everything I was supposed to do. I had my major surgeries, I took my medications, I received chemotherapy, I even wore the damn pink ribbon, and yet, my cancer was spreading. While my oncologist assured me that it had nothing to do with me/my actions, that my cancer is just super aggressive, I couldn’t help but second guess myself. Turns out, I wasn’t the only one questioning how this happened. “What did she do to get cancer,” someone point-blank asked my younger sister.

What did I do to get cancer? Well…I had breasts. Anyone with breast tissue is at risk for developing breast cancer, even men. I also have the BRCA1 gene, so that too put me at a higher risk. Doctors and scientists are unable to pinpoint an exact cause for cancer; they can only look at risk factors like that. But that’s not what he meant. He was looking for a direct cause and effect, and in a way, insinuating that somehow I made a slew of bad choices that brought this on. His questioning was borderline victim-shaming.

Make no mistake, I do not see myself as a victim. Instead, I consider myself an advocate. Just a few weeks ago, I attended a training program through an organization called Living Beyond Breast Cancer (lbbc.org). I met several young women from many different walks of life, all with their own story and struggle. Never once did I look at any one of them and think “I wonder what she did to get cancer.” None of us asked for this or saw it coming. In fact, a common sentiment that we all expressed is that we felt we were doing everything right. Like me, these women were blindsided.

Our weekend together was empowering and insightful. I met a few other “lifers” who were kindred spirits. We all came together with the mission to raise awareness and educate our communities so that people will stop asking what we did or did not do, and instead ask what is being done to find a cure. My “mets sisters” and I are literally dying for it.

Sometimes, this keeps me up at night. I head to the nursery and I look at my son. All I can think about is how much (or how little) time we have together. I hold him close these days, especially at bedtime. I am at peace as he sinks into my embrace and his thumb slowly falls out of his perfect little mouth. After I lay him in the crib for the evening, I find further solace in my husband’s embrace. We talk about life and about death. We cry, but we also find ways to laugh. We remind one another that even though we received “nightmare news,” we do not have to live every minute in that nightmare.

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.

Spilled Milk

After receiving the news that my cancer spread to my bones and that my spine is fractured in two places, I told my husband that I feel like I am disappearing; that the cancer is consuming me whole. When I look in the mirror, I see a shell; a ghost of the person I used to be. My body seems to be failing me and when I look at it, it is just a physical manifestation of all my pain …and simultaneously all my strength. I am caught in this dichotomy every time I look at myself.

I am proud of my body and everything that it has been through since childbirth and my diagnosis, but I am also reminded of all its shortcomings every time I step outside my door. As a society, we are obsessed with body image, and our definition of feminine beauty in particular has never been more troublesome to me than it is now. Most days I am able to shrug off my own insecurities of what others may think when they look at me. Some days, however, I just don’t have the words to express what I am going through. I therefore reached out to a friend to help me tell my story through photographs.

 

If a picture is worth a thousand words, I hope you’re wearing your reading glasses, because I have a lot to say. I haven’t really opened up too much about my mastectomy and I think it is finally time. I have found the experience to be deeply empowering, but I also need to be honest and vent some of my frustrations.

 

 

Here’s the thing everyone needs to understand about those undergoing a mastectomy – we are not in it for the “boob job!” I am all for making light of a bad situation, but it is insensitive and ignorant to assume that everyone undergoing a mastectomy will choose reconstruction or that the reconstruction will even come close to replacing what a woman has lost. For me, I will never breastfeed again—cancer took that away from me only a few short months postpartum with my first child. A “boob job” cannot fix that.

The morning of my surgery, my husband brought my son into our bedroom, and I nursed him for the last time. I remember looking down at him on my breast, and feeling a sense of calm and peace. I knew that I was making the right decision for all of us. The days leading up to the surgery though were a mixed bag. At work I would go into the closet sized space that they designated as my pumping room and more often than not, I would cry. The room was on the back wall of my company’s call center, so I could hear all the hustle and bustle- people going about their normal daily activities- while I was struggling to cope with the reality that I would be irrevocably transformed by the upcoming procedure.

I’m not sure if it was the size/location of the room, the guilt I felt being there instead of with my son, or the absurdity of being hooked up to a machine by my breasts while weeping big, fat, ugly tears, but I had never felt more isolated.

I mourned the loss of my breasts because I had finally had the privilege of using them to nurture another human being. As I’ve mentioned before, breastfeeding came naturally to me, and I felt robbed. I have yet to be robbed of my sense of humor though, and I got through the surgery the same way I get through today - by making jokes with my husband. The biggest one ended up being the title of this blog…as a nursing woman losing my breasts, you could say it was “spilled milk.” I accepted my situation and told my husband there was “no use crying over it.” Instead, I chose to embrace it. 

 

I decided to bare all, as a means to heal myself and also to educate others.

This is what breast cancer looks like.  

 

I choose to have a bilateral mastectomy (meaning both breasts) even though my cancer was only in the left breast. This decision seemed like a no brainer when I learned that I tested positive for the BRCA1 gene mutation. This gene put me at a higher risk for breast cancer, breast cancer recurrence, and the development of ovarian cancer. Simply put, at the time, I thought if I didn’t have breasts I’d be in a better position to never have cancer again.

For the procedure, I had two surgeons – a general surgeon to perform the mastectomy and a plastic surgeon to begin the reconstruction. What most people don’t realize is that breast reconstruction is a gradual process. During the mastectomy, the surgeon removes all of the breast tissue and, at least in my case, the nipples. The plastic surgeon then comes in behind her, to begin the reconstruction, and is only able to work with what the first surgeon leaves behind. This is one of the many reasons why breast reconstruction after mastectomy is not the same as breast augmentation (aka a boob job).  I did not get to choose the size or shape of my new breasts. We had to build them from scratch.

For my reconstruction, the surgeon recommended tissue expanders. These hard plastic balloons are inflated, over time, to rebuild the chest wall and form a cavity for an implant (the expander is later swapped out for the implant during what is called an “exchange surgery”). It does not hurt, but it is not comfortable. Every day I am very much aware of the foreign object under my skin. Every night I struggle to find a decent sleeping position. 

After only three expansions, my plastic surgeon and I agreed that I was done. The skin on my left side, where the tumor was, is pretty thin and we did not want to risk tearing. I will be able to have my exchange surgery most likely early fall. As much as I am looking forward to getting the expanders out and hopefully feeling (and sleeping) normal again, I do not have any sensation in either breast. So they’re just…there. If I had to do it all over again, I still would have removed my breasts, but actually would have passed on reconstruction altogether. I might still decide not to go through with the exchange surgery. In the grand scheme of things, my chest does not matter to me. I have more important things to worry about…the tumors in my liver…the fractured vertebrae in my spine…my son and my husband... my family and my friends. For the most part, I am comfortable and confident in the skin I am in, but it’s only skin.  

I have come to find that, metaphorically, my skin is a lot thicker than I once thought. Still, I find the need to remind others to please stop making the boob job jokes, or telling women who are facing a mastectomy that they are somehow lucky to be getting new boobs. I was perfectly content with my former breasts just the way they were. I will be content with what my plastic surgeon is able to construct for me. My breasts never have and never will define me. And yet, I am not the same. I will never be the same. While I can see what is happening to me physically, the mental ramifications have taken longer to reach the surface.

 

Every time I look in the mirror, I take a few deep breaths, and I tell myself that I am not my body. I am not what happens to me. The parts that truly make me "me" are still intact. So while I might not always recognize the person staring back, I know that she is resilient. She is a fighter and she is a survivor.

 

Photographs courtesy of Jason Shaffer Photography.

 

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.

  

 

The Medium is the Message

When I was pregnant with Frankie, I wanted to be as prepared as possible. So, naturally, I started consuming everything that I could about how to be a good mommy. I read a couple books, you know the ones – “What to Expect When You’re Expecting” and such, but for the most part, I fled to message boards and a slew of online baby sites…all from the convenience of my iPhone. After Frank was born, I continued to reach for my phone to consult the world wide web on whether I was feeding him enough or whether I had the temperature in his nursery right, if he sniffled could he be coming down with some strange illness!? I realize that all of this is normal, but I got to the point where I finally had to put the phone down and just stop already! I realized that I needed to learn from him, not some random website. While there certainly is a lot of information to be gleaned from such resources, there is no substitute for human interaction. I began taking my cues from him and we’ve been a better pair because of it. As questions arose, I found it much more beneficial to meet with our pediatrician (you know, the real baby experts) and stare in the whites of her eyes rather than strain my own against some bright LED screen.

And then came my cancer diagnosis. I again jumped online, with just a swipe of my finger across my phone’s screen, consuming as much as I could to try to make heads or tails of my pathology reports, prognosis, etc. The problem though, is that every time I reached for my phone, Frankie did too. He is already obsessed with finding out what this gadget does and has even taken a few baby selfies. At first I will admit, it cracked me up. But then I realized, again, that it was time to put the damn phone down. What exactly was I teaching him here? I never wanted my phone to become a toy. I really do understand parents who let their kids play with it, but for me, I was pained by the sudden awareness of just how much time I was wasting on this silly device rather than spending time with him. Time that I now know is limited and therefore precious.

Yesterday I had my follow up CT scan to see how the tumors in my liver are responding to the chemotherapy. For those who don’t know, when you have a CT scan you are required to drink a sizable container of barium sulfate which is a contrast solution to help light up your organs, making them easier to see on the scan. After drinking it, you wait for 45 minutes. Normally, I would be one to reach for my phone and, as I’ve spent a lot of time in waiting rooms recently, I can assure you this is the norm for most people. Yesterday, however, I challenged myself to keep my phone in my purse. And just like that, I become more approachable to others. I ended up having a very nice conversation with an elderly couple. You could tell within an instant that they had a tremendous amount of love and respect for one another. I was especially impressed with the woman who, despite sharing sad news about her husband of many years, kept a smile on her face the entire time. She talked about caring for her husband and how she saw him through his fight with cancer. I held my husband’s hand a little tighter – my caregiver seeing me through so much already too. I told him later on the drive home, that I want to be like this woman. That I want to grow old together and take care of each other and that no matter what our situation, we will continue to hold hands and smile in the face of anything.

This couple gave me so much confidence in myself and in my marriage, and yet they were total strangers. Had I been on my phone, I would have missed this gift completely. Anywhere you go, look around. I guarantee you will see a large number of people giving their phones more attention than the people they are with. This isn’t some great revelation; it’s who we’ve become as a society. We have unlimited information at our disposal, and yet when you get down to it, all of it is garbage compared to what’s right in front of us. We spend so much time on our smart phones that we’ve become a herd of dumb people. We retreat to social media but ironically we’ve become anything but social. It’s actually extremely isolating. If I had my phone out, I guarantee that I would not have benefited even half as much as I did in talking to that couple.

This post is not intended to tell you how to live your life, but if I can make one tiny suggestion, for God’s sake, don’t spend it glued to a screen. Put the phone away and look people in the eye. Have a genuine interaction. Nothing is more important than the people sitting next to you, dying to have a moment of your time.  

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.