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.

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Let’s Play Taboo!

Hello from the final stretch of my Spring Break!

I got out of dodge just in time to avoid that latest snowstorm and enjoyed some traveling and some sunshine. I squeezed in time for a second opinion on treatment as well: an update on all that will come soon.

With the sand of the Atlantic and Pacific beaches freshly shaken from my flip flops, I encountered that common experience of coming home from a vacation and being smacked in the face by reality. Instead of denying it exists or shoving it in some emotional drawer, I decided to do what I find helpful: make it a blog post, so we can all get uncomfortable together!

 

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Just in time for your Easter or Passover gathering!

 

Drop It Like It’s Hot Not Socially Acceptable to Discuss In Public

There are some topics people advise you to avoid at dinner parties and in polite conversation. Cheif among them are money and religion. We all have some relationship to both subjects, even if it’s a lack thereof.

I don’t mind talking about money because I’m a millennial who likes avocados. (If what I’m saying sounds strange, read that linked article. It’s a riot.) To top things off, I teach theology at a Catholic school. I’m well on my way to being the rudest person ever! So in the style of the 1990s Real World, let’s “stop being polite* and start getting real.”
(*As a personal side note, politeness is a personal tenant of mine. In this instance, we can replace polite with “taboo.”)

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I’ll use any excuse I can to make a musical theatre/Liza Minelli reference.

Money
I get medical bills in the mail constantly. 

Every single one makes me panic a little and/or cry. Yes, even though I have health insurance from my employer. Yes, even when I have someone explain it to me. Yes, even while I understand medical care is expensive and qualified people need to be compensated. (It doesn’t help that my policy is technically two companies with separate plans and they don’t communicate with one another, but that’s for another day.)

Medical debt is the leading cause of bankruptcy in the United States. Let that sink in for a bit. It’s absurd. Many of you may already know it. While you are busy saving your life, you are pretty likely to lose your shirt.

When you have cancer, you are constantly paying medical bills. Yes, even though you “beat” it. Yes, even when you are “in remission.” Yes, of course, I’m happy just to be alive. But my expenses have changed drastically. My diagnosis in particular has an extremely high recurrence rate: 30% have a recurrence within five years of initial diagnosis. I will be cut open, treated, or at the very least, scanned every year for the rest of my life. That means I will likely reach my maximum out-of-pocket expense for as long as I live- regardless of what insurance plan I have.

I am a teacher. No one gets into teaching for the money. The money that I started to put aside for a (tiny) home is now dedicated to keeping me healthy. Here’s where things get complicated: while I admire the lifestyle, I am determined not to live like a monk. I want my expenses to be a reflection of life and not a fear of death. My trip to California made me feel great, gave me memories, even alleviated some of my side effects: worth it. A private restorative yoga session with an amazing teacher helped me find some peace with my body: done.

This is not a money grab nor a plea for sympathy. The reason I’m being vulnerable and borderline uncomfortably honest with you is this: those gofundme and youcaring sites asking for help with medical bills are not for people who are any less hardworking or deserving than you and I. They are for people who need help to make ends meet when life has not gone according to plan. If Notorious B.I.G. taught me anything, it’s that money doesn’t solve problems,  but it can alleviate some worries. When you have a diagnosis like cancer, you’ve got enough to worry about and money, unfortunately, is nearly always one of them. Have faith knowing that if you are moved to donate, you’re contributing towards a peace of mind that allows people to focus on their disease and not their declining bank account.

 

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A Disney and a Shakespeare nod in one? Double win.

 

Religion
People will say things that hurt, even when they don’t mean to.

I didn’t give anything up for Lent this year. Instead I practiced patience, especially when people said things that were hurtful. (“Father, forgive them, they know not what they do.”) There is not a lot in my life I can control, but I can start by bettering myself.

There are people that look at me with pity, as though a bell will ring and I will get my angel wings at any moment. I observe them looking for signs that I’m healthy or that I’m not- I’m fairly certain I more or less look the same as I did a few months back. I don’t fit the “bald and brave” image of a cancer patient that may come to mind given television, movies, or even personal experience. I know this reaction is well-meaning and coming from a good place and usually more about the other person than me. Maybe it’s bringing up painful memories of loved ones with a similar struggle or their own fears of mortality. I get it. I was there once, too. They’re scared, that’s okay.

To counteract that, I like to be one step ahead of the joke. I’ll lift something potentially heavy and quip, “I should use this arm while I’ve got it!” Or, as previously mentioned, I don’t use traditional household cleaners, and I’ll justify it with “using them is linked to causing cancer.”

Other times, 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.

When this happens, I remind myself to take a deep breath. I use what Brene Brown calls in her book Rising Strong the “hypothesis of generosity.” Brene suggests that you ask yourself in these challenging encounters, “what is the most generous assumption you can make about this person’s intentions or what this person said?” Often I come back to the same conclusion: it’s more about the other person than it is me. The people I love don’t want to see me suffer any more than I do, and it’s more comfortable to think that things can always be worse. Or there just might not be words to capture what either of us is feeling: cancer’s awkward.

In Christian tradition, today is Holy Saturday. It’s the day between Good Friday, when Christ’s death is recalled and Easter when the resurrection is celebrated. One of my favorite Jesuits (yes, I have favorite Jesuits) Fr. James Martin puts it this way: “Most of our lives are spent in Holy Saturday. In other words, most of our days are not filled with the unbearable pain of a Good Friday. Nor are they suffused with the unbelievable joy of an Easter. Some days are indeed times of great pain and some are of great joy, but most are…in between.” My days since my diagnosis have become mostly a Holy Saturday type of day. I’m wedged between the grief of knowing my life will never be the same and the astonishing bliss of simply being alive.

True faith, to me, isn’t about either/or: it’s about both/and. Things don’t fall neatly into the categories of good or bad. Life can be painful and hard; it’s also astonishingly and profoundly beautiful. Cancer is a burden and a teacher. Money is a blessing and a curse, religion is hard and it makes somethings easy: talking about them is uncomfortable and necessary.

Whenever I leave this place, I hope I leave it better than I found it. It’s my hope that I can use this complicated mess I’ve been handed and become a force for understanding – this little blog my attempt at that. Perhaps it goes without saying, but without readers, it would just be a call out into the digital void. (If a blog is posted in an empty forest and no one is there to read it, does it make a sound?)

Thanks for reading, and if you made it through this whole post, thanks especially for getting uncomfortable. Stay tuned for my next entry: racial justice and politics! (Just kidding… though I do talk about those things often! Feel free to reach out if they are of interest to you as well.)

guidance

The Binder

If there’s one thing I’ve lived by in my 28 years, it’s this: When the going gets tough, the tough get organized.

I often joke that I am type A down to my blood. (I’m type A positive.) My innate control freak nature has been softened over the years through meditation, mantras, and lots of life lessons. What’s left is essentially an elementary school teacher motto (“Do your best, forget the rest!”) and a solid appreciation for office supplies and organization.

It should come as no surprise, then, that when my life was sent into a dramatic upheaval at the end of January, I reached for my best coping strategy: organize it… and for Pete’s sake, make it look pretty.

Why? Well, the two-pocket folder containing documents from my surgery in September was bursting at the seams. When I needed a place to keep all of my documents back in the fall, I naively thought the situation was temporary, so why spend time on a fancy binder? But after my diagnosis, just looking at the thing made me my blood run cold. There was nothing colorful or hopeful about it. While there were so few things in my control, my binder was one of the few I could manage.

One of my rockstar cancer survivor friends sent me in the direction of Michaels, hinting that the DIY method might be right up my alley. (She knows me well.) Here’s the thing: if you’re a three-hole punch,  black “High School Chorale” style binder person, more power to you. I wanted something that was less reflective a diagnosis and more representative who I was as a person. My mom and I spent an arguably absurd amount of time in front of the binder display, debating the merits of a rose gold vs. a teal cover and discussing the kind of dividers we might need in the future.

I’m too ashamed to tell you the total I spent on binder supplies, but I promise that it was done with coupons and teaching discount in hand. I left the store feeling lightyears better about the pile of paperwork, business cards, and medical imaging that would fill the pages. It had nothing to do with the content itself: the reason I felt great was that this binder was suddenly more me.

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Maybe she’s born with it, maybe she spent a few hours watching Netflix, obsessively hole punching medical records and thoughtfully arranging pre-punched pocket folders.

 

In an effort to make this blog a resource for patients who have been recently diagnosed, or if you’re just curious, here are things I added to the binder:

  1. A section on critical contact information for me. It’s easier to copy my Primary Care Physician’s address than to look it up on my iPhone, and I can be sure I’m not giving the wrong zip code for one of the many NJ towns in which I’ve resided. (08043? 08648? 07940? The list is too long to count.)
  2. Copies of my insurance and prescription cards. Especially handy if I someday forget to bring the originals.
  3. A list of current medications I’m taking... plus their frequency, dose, and reason for taking them. I also include the vitamins and supplements I take.
  4. A 2017-2018 calendar with significant dates. I prefer a monthly view: that way I can reference my immediate medical history, doctor’s visits, procedures, and testing with more specificity during appointments.
  5. A section on contact information for my UPenn doctors. I’ve already met with five doctors. Each had at least one Physician’s Assistant or Administrative Assistant. There’s also the file room at the hospital and several pharmacies which I use. When you take into account all my current doctors, plus my previous medical care, that’s a lot of info. I have their numbers in my phone, with UPenn as the last name for reference, but it makes it easier to have it all in one place.
  6. Looseleaf paper. It’s a space for doctors to draw pictures, my own quick doodling in the waiting room, and the jotting down of questions ahead of appointments…. not to mention the concept of leaving space for possibility.
  7. A unicorn sticker. Totally optional. (For me, a non-negotiable.)

And there you have it, my grown-up Lisa Frank creation. I wouldn’t go so far as to say I never leave home without it, but I’m certainly looking to debuting my masterpiece next week at the two-week follow up with my oncologist.

Thank you again, as always, for your countless kindnesses. They have carried me on my way so far and will continue to keep me going in the times ahead.

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Why thank you, binder! You’re pretty great yourself. (This goes for you too, dear reader. Keep on rockin’ in the free world.)
guidance

How Can I Help?

I’ve gotten so many wonderful offers of help from friends, family members, even strangers who have asked how to support me during this time. Your generosity is truly overwhelming!

I’ve put together a list of things that are very much helpful and some things to avoid.

* Important note: We will absolutely both make mistakes. This is my first time with this kind of long-term battle. I may be short-tempered or moody and you might be uncomfortable. It’s okay. We’ll both get through this!

PLEASE DO…

  1. … reach out!

A text saying “thinking of you!”, a story about your dog/cat/toddler, or a quick update on your life are all great things. I’ve gotten so many of these that I recently couldn’t keep up with responses! Do know that even if I don’t reply for hours, days (or ever), I will read it, smile, appreciate your gesture, and send you some love back.

  1. … keep thoughts/prayers/good vibes/positive energy coming!

I can use it! If you feel like you can’t do anything else, trust me, this is helpful.

  1. … stay tuned and read on!

There is so much that’s out of my hands right now, so I really want to control the narrative of my story. I want information to come from me and to dispel any speculation about the current state of my health.

At current press time, there is no need for a “SAVE FERRIS” style water tower. (Probably ever, actually.) To avoid the labor cost of hypothetical and unnecessary painters, you can subscribe to this blog by clicking the blue “follow” button on the right side of the page and receive an email update each time I post. Is your inbox as crowded as mine? You can add this site to your bookmarked pages.

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“Save Christina” doesn’t have the same ring to it, anyway. (Image credit.)

 

PLEASE TRY NOT TO…

  1. … ask me lots of questions about future plans.

I honestly don’t know if I will be able to come to your retirement party/bris/dog’s birthday party. I don’t know how my medication will make me feel on any given day. If you want to invite me somewhere, rest assured I’ll try to be there if I can! (I love parties and free food!)

I don’t know what happens once my first round of targeted therapy is over. There’s a lot up in the air at the moment. Instead of asking me about future treatment, you can ask me questions about how I’m feeling today, about my doctors, and if I am excited about the upcoming season of The Crown on Netflix featuring Helena Bonham Carter. (That answer will be yes.)

  1. … treat me like I am sick.

I want to do as much for myself I can because I am independent, stubborn, and as of right now, not incapacitated. (Fun fact: my first sentence was, “I do it myself.”) If you sense I may be struggling with something, a simple “can I help you with that?” goes miles before assuming I am unable to do something.

  1. … come see me in an overly emotional state.

It’s understandable that you’re upset or shocked about my diagnosis. I would be upset if any of you were diagnosed as well! However, I am focusing on taking care of myself at the present time. If you get a little teary, that’s okay. (I’m bound to as well.) But if you’re sensing a beating of your chest or Nancy Kerrigan style breakdown while shouting “why?!” coming on – a visit may be better at another time.

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Why?! (Sorry, Nance.) Image credit.

I encourage you to seek the support you need as you process this information if it’s deeply affecting you. Therapy is great! Everyone should get therapy! Being in nature or with a pet is also great. In summary, do whatever helps you to process things in a healthy, realistic way.

  1. … assume you know my cancer.

Ok, this is a big one and a hard one. I’m almost 100% sure I’ve broken this one myself. You want to help and you feel powerless: I have, too.

There are a fafillion different kinds of cancer. Mine is going to be different than the next person’s, even if we have the exact same type of cancer. Mine will be different. Desmoid Tumors are rare and rather mysterious. We don’t know much about them or how they behave. I am probably not going to look like most cancer patients you’ve known, because this cancer and its treatment vastly are different than others. If you’d like to offer some information you found, a service, or some treatment, thank you! But full disclosure: I may not take you up your offer or put your recommendation into practice.

The same goes for natural remedies and the like. (FYI, I’m already pretty hippie crunchy granola to begin with, and while I love essential oils, I’m pretty sure they won’t cure my tumor.) If your aunt’s cancer was cured by eating nothing but oranges covered in pink Himalayan salt, that’s great! Thanks for mentioning it, and perhaps I’ll investigate and see if I can find some science to back it up. I’m trusting my gut, some research, and the wisdom of my doctors.

  1. … expect sunshine and rainbows all the time.

I’m going to do my darndest to stay positive, to look on the bright side, and to embrace this all as an adventure – but I can’t promise I’ll be able to do this all the time. Hey, some days, I might just be tired and we both might need the comforting words of Fred Rogers, national treasure and Best Neighbor Ever.

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Mr. Rogers, you were the hero we did not deserve. (Image credit.)

Please be patient as I work through the hard days… and if you want to be safe, approach me with chocolate in hand.