Post Disney...the Magic is Over. Back to Reality.

What can I say… Our trip to Disney truly was, in a word, magical. We had such an amazing time and my favorite parts were watching my son, and watching my husband watch him. The joy on their faces was the most beautiful thing I've ever seen.

Every day, my little man was so full of love and life, giving lots of hugs and kisses and sharing in all of the excitement around him. He did so wonderful!

As for me, I never felt better. I was able to somehow leave cancer behind and feel normal for the first time in a long time. The warmth and sunshine were great on my bones, and getting around was not a concern at all. In fact, it felt awesome to move so much after being sedentary.

Some of my favorite highlights included: The Festival of the Lion King, Finding Nemo the musical, the Festival of Fantasy parade, the Starwars fireworks with dessert and open bar, eating/drinking our way though Epcot with my parents who were able to join us for the day, splashing around the resort, and of course all the food stuffs including the most tasty treat: dole whip!

We made so many memories! And then… It was time to come back to reality. We all brought back an added souvenir and were feeling pretty crummy, but I ended up in the hospital with strep B. A follow up CT scan showed that there continued to be further progression in my liver, and so my treatment was once again switched. I had been on a combination of Afinitor and Aromasin for a little over a week, with excruciating headaches every day. Waking up with these headaches was just awful and my morphine seemed to be the only thing working to keep the pain at bay, but not the most effective at keeping me functional.

Finally, they became too much. I started to have blurred vision/floaters/lights over my left eye. My sister came late Monday morning to help with the little guy while I scrambled to call my palliative care nurse who reached out to oncology. They decided on a stat MRI.

After getting the pain under control, I opted to go to the MRI alone. Note to self for my fellow patients or their caregivers… Never let someone go to an appointment alone. After the scan I was told to sit tight and wait to go over the results with the on-call oncologist; never a good sign considering I usually go home and hear back in a couple days.

Sure enough the news that I've been dreading for so long hit me like a ton of bricks; The cancer has continued to progress is now in my brain. I have six small lesions and enough swelling to cause concern for risk of stroke, so I was admitted to the ER immediately. They've been keeping me comfortable and today I begin brain radiation.

While I still have plenty of hope and I'm confident that this is not the end for me, I am utterly heartbroken. I don't understand how just this past fall I was no evidence of disease and yet now the cancer is running rampant. Will we be able to get it back under control? Will radiation work?

I don't have the answers anymore than the next person. But what I do have is everything worth fighting for. My son and my husband, my family and friends. I love you beyond what I can say in words.

I am grateful for all of the outpourings of love and support. If anyone is trying to find a meaningful way to help or help others in a similar situation, I cannot say enough good about MetaVivor.org. What we need is research, not ribbons, to save our lives. Please consider a donation in which 100% of your gift will go toward research of metastatic breast cancer. While it may not make much of a difference in my lifetime, we can make a lifetime of difference for someone else.

As alway, much love and many thanks!!!

F it, I'm going to Disney World!

I've never been particularly sneaky or good at subterfuge. My cancer, however, excels at both. When I tried sneaking around in HS (peer pressure man) I was inevitably caught and then made fun of for what I horrible lier I was. My cancer though is soooo good at hanging out under the radar and then emerging in droves for a rave! After reappearing and shattering my hopes of being NED (no evidence of disease) for a long stint, my cancer also outsmarted my chemotherapy. Again. 

I received six rounds of Abraxane and then it came time to scan again. I'm happy to report that my lungs are clear and my bone mets remain stable; the tumors along my spine have been causing minimal pain. It's an annoyance at this point, but not a cause of tremendous concern. 

My liver though....it looks like it's been blanketed in a polkadot pattern throughout. The CT scan noted there are "innumerable" tumors in both the left and right lobes, and that two of the tumors have grown in size considerably since my prior scan. 

Fuuuuuuuuuuudge.

On to the next drug, my fourth line of defense against an extremely aggressive foe. 

As I write this, I am awaiting the results of a stat echocardiogram, to determine whether my heart is strong enough to handle the cocktail we've landed on as a potential means to get this back under control. 

This, you see, is how stage IV, metastatic disease is treated. We weigh the drug options against the risks and hope it works. Eventually, the cancer outsmarts the drug and we start over again, for as long as our bodies can take it. It's a kind of Russian Roulette. 

So I don't buy it when anyone tells me this should be viewed as a "chronic condition." I am not the same as a diabetic... I don't get my insulin, make the right lifestyle choices, and move on with my life. I could be doing everything right, yet my cancer seems to continue to be one step ahead of me, determined to kill me off. 

My husband and I decided to get a second opinion this week. While the doctor was very compassionate, the meeting really only validated what we already knew- we've been receiving excellent care, but I'm at the point where I run the risk of my liver failing. I'm at the point where we may be at our final few treatment options. 

My oncologist and I had the conversation of what's most important to me at this stage-- an aggressive treatment that will leave me utterly wiped out for weeks at a time, or a higher quality of life and a treatment regime that means coming to the hospital weekly but having a higher chance of functioning day to day. I chose the latter. 

I told my oncologist that I really want to take my son to Disney in the next few years. With remorse in his eyes, he told me I'd better plan that trip for sometime over the next few months. 

The only time I've been to Disney was back in HS when I went with our symphonic choir to sing during a candlelight processional. It really did feel like the most magical place in the world and I was so thankful to be a part of that experience. Having a young son, who is obsessed with Mickey Mouse, I cannot wait to see the joy on his face and to share that magic with him! 

I've been living appointment to appointment for the better part of a year. It's high time I start living moment to moment, making positive memories along the way. 

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. 

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