experience, guidance

Look Me In the Eye: How To Talk to Someone with Cancer

Have you seen this quote from Brene Brown making the rounds on social media lately?bb.pngAs always, Brene speaks the truth.

As I’ve shared my challenges with friends, family members, and coworkers over the past several weeks, it’s been uncomfortable. No one likes to feel pain, and looking at others in pain can sometimes invite our own right in. Instead, we look away out of fear and discomfort. We resort to platitudes or silence. I understand that impulse. I’ve been there.

A few honest friends have confided in me that they’re worried about saying the wrong thing. I’ve been there, too. I’m positive that when I’ve spoken to people going through challenges I’ve never faced, I’ve said things that were not as helpful, comforting, or meaningful as I intended them to be. Call it “foot-in-mouth” disease or a manifestation of social anxiety – it can be hard to navigate what to say when the people we care about are suffering.

What I want to ask – even challenge you to do – is to do it anyway. When people are struggling and hurting, what gets them through is the feeling that they are not fighting alone.

In that spirit, I’d like to share with you some helpful guidelines on how to speak to someone who is facing cancer. Please note that all of these are guidelines and suggestions from my own experience. Someone else might require or ask something of you that’s not listed here. I also freely acknowledge that I may mess up, as will you. We are allowed. We’re both learning.

If you don’t know what to say, keep it simple: say exactly that.

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French or English will do. Image credit.

“I don’t know what to say, but I am here to listen” is perhaps the most straightforward help you can offer. A cancer patient’s challenges are likely different than your own; news they are processing with might be overwhelming for you to consider. I’ve been told several times, “Wow, I don’t even know what to say.” I have always, always appreciated that simple honesty.

Google it.

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Image credit.

I promise, I’m not trying to be smart-alecky. This is something I’ve done countless times when friends have faced miscarriages, child loss, loss of a spouse, or divorce… you name it. I was terrified of screwing it up, so I sought advice.

There are a lot of great resources out there on how to talk to and be supportive of someone with cancer. Here are a few I like:
How Can I Help? – Shameless self-plug. This is one of my old posts, so it’s already me-approved.
10 Tips for Supporting a Friend with Cancer – from Memorial Sloan Kettering.
Cancer Etiquette – from the Cancer Treatment Center of America.
5 Ways to Support a Friend with Cancer – From the Patient’s Playbook.

Try not to start any sentence with “at least.”

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Image credit.

I will continue to share this video on empathy until everyone in America has seen it. If you have not seen it, stop what you’re doing and watch it now. I’ll still be here.

Saying “at least” is something we are all programmed to do. We like finding a silver lining or want to comfort a person we don’t want to see in pain. I am sure that I have said “at least” when talking to others about their own struggles; I am learning and actively working on correcting it myself.

Here’s why these words, while well-intentioned, can do a lot of damage: it is a daunting task for me to share candidly and allow myself to be vulnerable. When I do open myself up about my emotional messiness and others advise me to see the positive, it sends me into a shame spiral. I feel guilty that I can’t just be happy. I feel ill-equipped to handle my daily life. I shut down and feel like I shouldn’t have shared at all. This doesn’t help anyone and has the opposite of the intended effect.

As I wrote in a post back in March of 2018, “People say things which unintentionally minimize my struggle. ‘Look on the bright side!’ kind of comments or comparing suffering is not always helpful, even when well-intentioned. Yes, I sometimes make ‘it can always be worse’ comments because some days that’s where I am. But on the days when my fingers feel like they’ve been shut in a car door or I have no appetite and the thought of eating anything makes me sick, I’m not interested in the bright side.”

What can you do instead? Be vulnerable, too. Sit with the person in the discomfort and the pain without trying to mitigate it. You can’t change the challenges they’re facing, but you will certainly help them feel supported as they face them. When someone allows themselves to be present through the bad and the ugly, we all feel less alone.

Mirror the other person’s language.

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Image credit.

If they say “I’m so disappointed,” you can respond “I’m so sorry you’re disappointed.” If that person says, “it’s so hard,” you can say, “that must be so challenging.” It sounds crazy, but it lets the person know you’re listening and their feelings are legitimate. Often times, patients aren’t seeking advice, they just need someone to listen. Everyone deserves to know that their feelings and experiences are valid. Mirroring their language is one way to let them know they are seen and you are there for them.

Send a card instead.

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One of Emily McDowell’s amazing cards.

If you need some time to prepare what you want to say, send a card. Emily McDowell is a wonderful artist whose cards are honest and say exactly the kinds of things patients want to hear. They’re heartfelt and sometimes funny, such as:

“There is no good cards for this. I’m so sorry.”
“I’m really sorry I haven’t been in touch. I didn’t know what to say.”
“I’m so sorry you’re sick. I want you to know I will never try to sell you on some random treatment I read about on the internet.”

“I know there’s no normal to go back to. But I’m here to help you build a new one. (And I’ll bring snacks.)”

You can buy her cards or read her wonderful words here.

I’ve received so many beautiful cards and I’ve saved every single one: they are hanging in my kitchen on a clothesline since I have run out of space on my fridge. So many of the most impactful cards are those I’ve received on my hardest days – something the sender could have never anticipated. Needless to say, it’s a win-win.

A picture is worth a thousand words.

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This is my all-time favorite photo of Daisy as a puppy. I’ll take any excuse I have to share it.

Is there an inside joke you can make time for? A distraction you can offer? Figure that out and offer it up often.

I have one friend who sends me photos of her dog whenever she thinks of it, another who sends me photos of her cat. Two other friends have appointed themselves Official Meme Senders and send me silly photos and videos on Instagram almost daily. They are a welcome distraction from my daily life of appointments and treatment prep.

Offer a specific way you would like to help.

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Image credit.

Have leftover food from a party? Offer to bring it over in case your friend or a caregiver could use a meal. Do you work in the medical field? Maybe you can help navigate some of the research that’s related to their diagnosis. Have a stellar movie collection? Offer to drop some DVDs by for the person to enjoy. Strong personality? Make those calls to the insurance companies on someone’s behalf!

“Let me know if you need anything” is great, but when chemo brain sets in, I’m more likely to remember the specific tasks offered. I’ve had several friends offer to assist with specific tasks: coming over to keep me company, making vegetarian dinners, walking my dog on days I don’t feel up to it, researching what can help with chemo side effects. This is extraordinarily helpful, because if some day in the near future I think, “I really can’t walk my dog around the block today,” I know who I can call.

Do not expect a response and do not disappear.

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Image credit.

I worry a lot – daily, if not hourly, that I am a burden on those I love and or that by sharing honestly what I am going through, I am driving away people that are close to me. Having spoken to others with cancer or chronic conditions, it’s a rather common and shared experience.

It means so much when people reach out without expectation or when silence is met with compassion. A few days ago, I did not have the energy to respond to anything or anyone. When I didn’t respond to the first text, a friend sent a message the following day saying, “No need to answer me. Just sending you love.” A few other friends, when I apologized for not getting back to them sooner, told me not to apologize. They just wanted me to know I was in their thoughts.

When all else fails, borrow one of these.

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Image credit.

“I am so sorry you are going through this.”
“This sounds so hard. I am thinking of you.”
“I’ve been thinking about you a lot recently.”
“I love you.”
“You will not face this alone.”
“What do you need from me?”

Final Thoughts

A cancer battle is awkward and challenging – for everyone involved. I hope these suggestions help you feel better equipped to navigate tough conversations or discussions. At the end of the day, as long as you let the person know you love them, it will be enough.

Thank you to the many of you who are willing to be uncomfortable with me. I am humbled and grateful.

experience, reflection

To Build (and Re-Build) a Home

I’ve been living with my diagnosis for just over four months now, and I’m continually surprised at how my experience of the news has evolved. I recognize within myself the changing landscape of emotions day to day, minute by minute. Now that I’m not purely on survival mode, this diagnosis has settled into the fabric of my identity. It’s not who I am, but it’s certainly a large part of my human experience.

Being diagnosed with cancer didn’t just change my relationship with myself, it changed my relationships. The way I interact with my coworkers, family, and friends has shifted in ways both subtle and dramatic.

If you’ll allow me, I’d like to explain what I mean using the analogy of a house fire. I chose this because it’s ostensibly imaginable and involves a lot of help. (Well, okay, the other reason being I’ve been watching a lot of This Is Us recently. ) It’s not a perfect analogy, but it communicates my point well enough.

Catching Fire

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When a house catches fire, hopefully someone alerts the authorities early enough and firefighters show up. My uncle was a volunteer firefighter, and I have fond memories of hanging out with him in the firehouse when I was younger. Here’s what I know: firefighters are unfathomably brave. They walk into blistering heat knowing their hat might melt to their scalp and they may leave needing medical care of their own. Without firefighters, buildings would burn right to the ground and leave so many without a place to call home.

Eventually, when their job is done, the firefighters leave. After an appraisal, some guidance, and lots of complicated insurance steps I don’t understand, contractors and workers come in to help re-build the house. Anyone who has ever had remodeling or construction work completed can tell you: it takes a long time. Deadlines are set and then pushed back. Calendars are changed. Plywood frames seem to stand bare in the cold, unchanging and without progress. But construction workers are undeterred. They’re hardworking, show up day after day regardless of the working conditions, and stick it out so that someday, somebody can move back in.

There’s another group, too. It contains a wide range of people who aren’t as apparent at first. As the house is burning, there are some who aren’t quite sure what to do in an emergency, or they don’t think it right to intervene, since it appears everything is being taken care of. Maybe some people feel it’s best to stay out of the way and say some prayers that everyone gets out safely and or that rebuilding goes according to plan. Fires are pretty terrifying, so it’s understandable it strikes a chord of fear in some and they don’t want to get too close. Or maybe one of the pipes just burst in a neighboring home, and that person needs to get on it before their basement floods and their possessions are lost. And I’m fairly certain there are some people who are just staring at the moment, still shocked at the fire happening just down the block, on their very own street.

The Afterglow

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Image courtesy of deviantart (psychonoir)

In case you haven’t caught on by now… I’m the house. And the homeowner. (I warned you this wasn’t a perfect analogy.)

When I was diagnosed, I was astonished at the number of people who rushed to help through their words, gestures, and thoughts. I received flowers, cards, text messages, and food. People offered me excursions to distract me from my circumstance, a place to stay in the city, their beautiful stories, their platelets: you name it, I received the offer. It was absolutely critical so soon after my diagnosis. If I didn’t have this outpouring of support during the first few days, I probably would have melted down completely. I’m so lucky to have these first-responders in my life.

In the weeks since, I’ve received less of the “emergency” response and moved into the builder experience. There’s not as many daily offers of help now that the smoke has died down, but a committed group shows up to check in and make sure things are on track. They’re the ones sending a text once a week, just to say hi. They’re the ones messaging me funny memes. Let it be known: these people are just as important the firefighters. They recognize that I’m not in a dire circumstance, but they can see that I’m currently down to the studs, and at times, in need of an extra pair of hands. I’m so lucky to have these foundation-layers in my life.

The third group is tough to describe at times because it’s less of a vocal and visible role. (I myself am not sure who’s entirely in it.) It could be that someone doesn’t feel it’s their place to reach out, or they’re more comfortable stepping back and sending some good thoughts my way. For many, there’s a good chance I haven’t heard that someone I’m otherwise close to is experiencing recent hardship or emotional trauma, and by all means, I WANT you to take care of yourself so you can be all that the world needs you to be. Just as I am lucky to have the firefighters and the contractors, I’m lucky to have the quiet support from people who want the best for me: I swear they are knitting and re-knitting the invisible wings I reach for and strap on my back on the hardest of days.

Truth Telling

What pains me most to admit is that there are people in my life who I expected to show up, and they haven’t. I don’t know why they aren’t able to be around (at least not yet). It’s embarrassing to admit because the number of these individuals pales in comparison to those in the other categories. But to omit this fact from an honest recording of my cancer experience would mean I’m not telling my full truth.

It doesn’t in any way detract from the volume of love, support, and good thoughts I’ve received from others. It’s just as though I expected someone to help me with a task, then something happened and they couldn’t make it, and I never got word. “Well, okay,” I think, and I try to make peace with it and not to take it personally. Because here’s the thing: despite them not being there when I expected them to arrive, I’m lucky to have them, too. Each of them had a role to play in my life in some way. I wouldn’t be who I am without their influence. Besides, who’s to say they won’t show up later?

I try to operate on the hypothesis that everyone is doing the best they can. It may sound spiritually enlightened… but it’s also just an easier way of getting through life without dramatizing too much. I believe deeply that it’s best to leave room for grace and generosity. I fully support giving people the benefit of the doubt. And regardless of whether or not they’re around now, no one is more worthy of that generosity then the incredible people who are part of my life.

A Housewarming: All Are Welcome

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I’ll take any excuse I can to share a Fixer Upper dining room photo.

Here’s what I want you to know: very, very few people can be both a first responder and a foundation-layer, and that’s the way it is supposed to be. Your true, authentic response, whatever it may be, is perfect, valid, and absolutely necessary. There is no need to change who you are or how you respond.

Stop trying to be a builder if you’re a first responder: if you didn’t send me that text that first week after I was diagnosed, I may have not gotten through my first week of living with cancer.

Don’t guilt yourself because you weren’t a first responder and you’re here to build: your support now, in the quieter moments, is so, so needed.

And I promise you, it’s okay to sit this one out, my friend: you may need to be an observer in my experience so you can be the first responder or builder in someone else’s life. Go. I’ve got this. And they need you.

There are very few individuals who have the emotional bandwidth and stamina to show up day after day after day for my needs. I myself get exhausted with my own drama at times. I consider myself inordinately blessed to have more firefighter/builders than I can count on one hand, and I hold them close and try to tell them every day just how much I love them and appreciate them.

There’s a great passage in Elizabeth Gilbert’s book Eat, Pray, Love where Elizabeth describes the difference between her sister and herself through a short anecdote, which I’ll attempt to capture accurately here for you. When her family received the news that another family experienced a tragedy, Elizabeth’s first thought was “my goodness, that family needs such grace right now.” Her own sister responded,”that family needs casseroles,”

Whoever you are, no matter what you bring to the table (grace, casserole, or company), thank you for being part of my journey. I’m lucky to have you here.

appointments, experience, treatment

An ER Visit and a Chance Meeting

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Fabulous rainbow image courtesy of pinterest.

I spent last night in the emergency room. On my list of things to do during the last week of school, this ranks far down towards the end, perhaps just above “give my kindergarteners espresso.”

First, some background. With my medication, I’m nearly always experiencing some form of nausea or loss of appetite. I’ll eat very little at a few meals, unable to choke down foods I previously loved; then I’ll be hungry a few meals later and try to eat as much as I can to take advantage of that window of opportunity. I have to eat even when I don’t feel like eating, which for anyone who has experienced it before, is a complicated issue. I’ve had people comment to me, “I’d love to have that problem!” or “It must be nice to feel like you can lose some weight.” These statements are really hard to hear. If I had my choice, I’d rather feel strong and healthy over sick and skinny, desmoid tumor or not. I suppose the “weight loss” impact might seem appealing, but without nutrition, my body doesn’t have the fuel it needs, which is exactly what happened this week.

At times my nausea is improved by eating (counterintuitive, I know) or at least subsides after a little food and a lot of rest. I spent Sunday laying low in my apartment: I did not feel great upon waking, but I managed to eat some oatmeal by the early afternoon, took a nap, finished a book, and felt better. On Monday, little appealed to me at lunch, but I made one of my go-to dinners: a falafel wrap with spinach, cucumber, tomato, and goddess dressing. I got to bed a bit early and decided I’d discuss the nausea with my oncologist the next day at my monthly appointment.

I never got to that appointment, because I was soon experiencing what I assumed as Stomach Virus Number Three of the past 30 days. I sent a text to my sister Jenna, who was scheduled to attend the appointment with me and is currently in nursing school. When it was clear that the virus was not letting up, she and my mom drove up to my apartment in the early hours of the morning. (I’ve said it before and I’ll say it again: my family is the greatest.) They took turns caring for me for the ten hours I was actively sick, looked after my super confused and anxious dog, and tried to catch some sleep ON THE FLOOR and on my couch. (Seriously, who does that? I can’t say enough how lucky I am.) When I was well enough to be in the car, they brought me to my parents’ house.

For two days, I had the ultimate recovery fake-out. I’d be fine during the day, eat a piece of toast and drink Gatorade, and send an email to my boss saying “should be good for tomorrow!”, only to end up sick that night. Finally, my oncologist’s office offered to get me a spot sometime the next day for an infusion of fluids and anti-nausea medication. They called in an oral anti-nausea medication and an anti-spasm prescription for my stomach cramping. But when I couldn’t even keep that down, my Mom went into “Mama Bear” mode and gently, yet insistently, offered to take me to the ER. We have an agreement: both of us always respect the other’s choices, but there will be times when we can straight up insist on having the final call. I knew I was in no place to make decisions about my care, so she googled which emergency room had the shortest wait, and off we went.

So, that’s how I ended up hooked up to an IV bag with fluids to hydrate me, anti-nausea to ease my belly, and morphine to take the edge off the pain. I finally felt some of the relief I deeply craved, and I remarked to my mom that it was the best choice I’d made in days.

Shortly before I was discharged, I would discover the full truth of that statement. One of the attending nurses on duty walked in and introduced herself. She had read about my medical history and said she had to meet me. Why? She herself had a desmoid tumor. I was floored and blinked twice to make sure this story wasn’t crafted by the morphine I’d been administered. As she worked on my discharge paperwork, she shared with me about her diagnosis, her surgery, and about her life five years later without a recurrence. Having only met one other Desmoid Tumor patient before (hi, Dakota!), this unscheduled and unorchestrated meeting was completely out of left field – and confirmed my belief that the ER was the best choice.

What’s next? Good question. I don’t really know. I’ve got another appointment with my doctor to discuss changing my medication. Since my white blood cell count was good on my latest labwork, it could be that these bouts are not actually stomach viruses, but a side effect of my medication. My oncologist advised me to stay off my medication until we can discuss it in more depth.

For now, I’m happy to be back on the couch with Fixer Upper reruns, water to drink, and slices of banana to snack on when I feel up to it. It’s been a wacky week, but as I’m continually reminded, living with this diagnosis means nothing that ever goes according to plan.