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.