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.

french.jpg
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.

question.jpg
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.”

empathy.jpeg
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 perhaps 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.

listening.jpg
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.

card.jpg
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.

image1 (11).jpeg
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.

to do list.png
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.

compassion.png
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.

hearts.jpeg
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.

Uncategorized

The Knowing and the Coming to Terms With

image1 (11)

I’ve been sitting with some news for a few weeks, and I’m ready to share it with you.

Starting next Thursday, I will be undergoing IV chemotherapy at UPenn to try to shrink the tumor in my chest. Infusions will be once a month for anywhere from 6-13 months. This specific chemo is called Doxil, and its nickname is the Red Devil.

I think I knew somewhere, deep down in my heart, that I would end up here. When the medication I tried for nine months, hailed by those in the medical community as a Top Oncology Breakthrough of 2018, failed to shrink this thing or halt its growth, I had my suspicions that I’d need to treat this aggressive tumor aggressively.

The knowing doesn’t make it any easier. The knowing and the coming to terms with are two completely different things.

Over the past month, I’ve done my research and explored the shortlist of options I was left with after my last scan. I requested a consultation regarding cryoablation, a specialized surgery in which my tumor cells would be frozen and hypothetically, my tumor would begin to die. The specialist told me pretty immediately that I was not a candidate: given its size and location, there was a good chance they would paralyze my arm in the process of treating the tumor. I got a second opinion at Johns Hopkins, where the oncologist confirmed the course of treatment my doctor recommended. I considered HIFU, which is only done at Stanford University and would require consultation, massive travel expenses, and temporarily uprooting my life (not to mention a family member). I ultimately determined I did not want to go down that road unless I absolutely needed to do so.

My alternative to all of the above was to wait and watch. It’s the one I struggled with most. On one hand, I desperately long to go back to my normal life. I’ve been enjoying living treatment-free and all the seemingly mundane perks that go along with it: going to classes at the gym, being in a show, eating whatever I feel like without nausea, having enough energy to stay up until 10 PM. But behind all of these gifts, I would be living with a “somewhat stable” tumor with the potential to do irrevocable damage. My pain has already increased. The measurements have only gotten larger with each scan. I can’t watch this tumor continue its slow, destructive march.

In the end, I decided that it serves me far better to put in the time for more aggressive treatment now, as a young, healthy, single twenty-nine year old, rather than potentially face the same conclusion when I’m older and life is somehow, mind-blowingly enough, even more complicated.

There are lots of things I have to say about the last few weeks. I want to tell you why it’s sometimes hard to be called brave, how the show I performed in became my blissful escape from reality, and what it was like to share the news with my students. I share because it helps me process this experience and gain perspective on what this whole mess could mean. But there’s another reason, the one that led me to create this public blog rather than keep a personal journal. In the last few weeks, I’ve been blind-sided by things I wish I had known about earlier. I cobbled together advice from professionals and put one foot in front of the other, hoping for the best. I want to share because I found so few resources that I really needed. If putting these experiences out there into the world can help even just one person, it might, somehow, in some small way, be worth my own heartache. I could begin to alchemize this pain and these challenges into something concrete, meaningful, helpful, or even beautiful for someone else.

For now, I’m squeezing as much as possible in the space I have between myself and treatment. I’m seeing two Broadway shows this week, because why not? I have a list of errands to run and people to see. I will have plenty of time while I’m on disability to tell you more. (Trust me, I’m on day two of my regularly scheduled Spring Break, and I’m already a bit bored.)

Please know in the meantime that I’m okay. This has been unimaginably hard. But as I repeat to myself daily, and put on the letterboard in my kitchen a few weeks ago more with the intention of convincing than reminding: “You can do hard things.” It doesn’t always feel true. But I’m proving to myself with each step that it’s at least possible.

reflection

Cancer-versary: My First Year, in Self-Portraits

January 31, 2018

I didn’t know it when I took the photo, but my life was about to be turned upside down.

I sat waiting in the office of a Thoracic Surgeon with the University of Pennsylvania, number six in the line of doctors I’d seen about the swelling near my collarbone. I had grown restless and annoyed as I waited. He was late, and I was already reeling from the radiologist’s recent assessment: a hematoma, caused by my surgery three months prior.

img_4703
The photo I sent to my mom as we waited in the office where I’d be told a short time later I had cancer. “Un-selfie,” January 31, 2018.

I took a very ridiculous, very unflattering selfie, (the one seen above), as I have done more than several times. In an effort to break up the silence and my own irritation, I sent it across the room to my mom, who had insisted on attending. A few friends offered to come in her place, but being the World’s Best Mom, she felt better being there, just in case.

Over an hour passed. Finally, the doctor came in with a nurse practitioner, shook my hand, and started to speak. Not particularly quickly. Nothing different in his tone than as if he were explaining how something worked in a piece of machinery; say, a car. But he had a lot to say. He explained that as I waited for the past hour, he had been trying to reach a radiologist he trusted to look at my scans. The radiologist didn’t feel it was a hematoma at all.

And then he used the word sarcoma.

He kept talking. No one moved or made any sounds, as though we were listening to a discussion about someone else’s life. I stopped him. “You said sarcoma. Are you telling me I have cancer?”

I don’t remember his response.

The room didn’t spin. The floor didn’t tilt, my legs didn’t give out from under me. Everything was unnaturally cold and still. I excused myself and rushed to find a bathroom, where I let out a wail that was more animal than human. There were no tears, which felt fair. How could there be enough tears to match the scale of the news I’d just received?

A few moments later, I let myself back into the room. There was a lot of talking. My mom was asking questions, writing down notes, furiously springing into action. There was a folder passed to her with handouts and phone numbers of places to call. The words biopsy, MRI, and catscan were used. Not knowing what else to do, I made a joke about having a team now. My mom drove me back to my parent’s house.

I don’t quite remember the rest.

I know that at some point, I sent texts to a few friends. I told my boss the news and that I wouldn’t be in for the rest of the week. In the coming days, I collected medical records from various doctors. I went to the Perelman Center for the first time and had an MRI, a catscan, and a core needle biopsy done.

I waited. Days passed.

I went to the movies and saw The Greatest Showman. I watched the previews and wondered if I would be alive when the advertised movies opened. I slept when I could, ate when I could. Monday came. I went back to work, because I didn’t know what else to do. I told my coworkers all at once, in a meeting, because it was easier than facing whispered speculation or fearful yet compassionate glances in the hallways.

One memory stands out from the rest of the rest, crystal clear in its detail. It was late, and I stepped outside to bring my dog out. It was cold, but quiet and calm – so much so that even the frosted tufts of my breath seemed too garish for the evening’s simple beauty. The moon was bright. I remember looking up and thinking, if this is it for me, I could be okay with that. I was loved by the most wonderful friends and family anyone could ask for. My profession fulfilled me personally, professionally, artistically, and spiritually. I enjoyed too many adventures to name: singing with a jazz band, training with a circus, walking 500 miles from France to Spain. I loved and had been loved. I certainly want to stick around, but if I had no say in the matter, I held the knowledge that I had done the most with the time I have.  Peace- quiet and small yet strong- settled somewhere within me.

More days passed. Valentine’s Day came and went. And on February 15, I finally got a call with my diagnosis: fibromatosis, desmoid-type. A google search said it wasn’t cancer. I called my thoracic surgeon and my nurse. They kindly replied that while google might say that, it very much acted the same way and needed to be treated as such. 

The rest is a blur.

January 31, 2019

It’s been a year: 525,600 minutes, for any Rent fans who may be reading this. Those movies I saw in previews have long ago opened and closed. I’m still here.

There have been times where I have felt forgotten, that I cannot convince people to take me seriously, or that I have every reason in the world to despair. At other times I have felt guilty, that others have it worse, or that I am making a big deal out of nothing. My life has never been harder. It’s also never been filled with so many reasons to hope.

I’ve been shown the kind of immense generosity, kindness, and compassion that pops up in occasional news articles about goodness in the midst of tragedy- the type I’d read about and believed in but never experienced firsthand. I received cards, messages, kind words from people I have never met. In eight months of fundraising, you’ve donated over $23,000 for the Desmoid Tumor Research Foundation.

When I last wrote, it was with the news that I was trying another oral chemotherapy called Gleevac. Unfortunately, it did not work out as I was unable to tolerate the side effects. I put on ten pounds in two weeks. My face was so swollen in the mornings my eyes could barely open. My joints and muscles ached and my pain skyrocketed. The day after Christmas, I was taken off of it, fearing that the treatment could have actually made my tumor grow. Fortunately, once off of the drug, my pain improved. Better still, a scan done two weeks ago showed that my tumor did not grow. It remains “mostly stable” with “small amounts growth.”

IMG_7276.jpg
Mornings on Gleevac, December 2018.

I’m at a crossroads with treatment once more. While stability is in many ways good news, it’s not shrinkage. My tumor is still close to my brachial plexus. It’s taken my pectoralis major, my clavicle, and two of my ribs and pushed a lot more out of the way, rendering my shoulder area unable to operate as a healthy person’s shoulder would. My pain has increased. In order to finally shrink this tumor, now the size of a grapefruit, it’s looking like aggressive treatment will be necessary. I haven’t made any decisions yet. I’m taking time to meet with more doctors and make the decision that’s best for me, my health, and my life. I do not have any updates yet.

What I do have is the thing I once feared most I would lose: time.

Here, Now. 

DSC_0445.jpg
Self-portrait, December 2018.

I’m calling today my Cancer-versary. I’m not quite sure what one does to celebrate a Cancer-versary, so I’m making it up as I go. I bought myself flowers and took the day off of work, my first personal day this year. I spent the morning snuggling with my dog; I think I’ll read and make cupcakes later.

With the chaos of the past several weeks and an indeterminate plan for the future, I didn’t really know how I’d feel leading up to today. Now that it’s arrived, I mostly feel what I did that night I stepped outside under the bright, beautiful moon: I’m thankful.

Thankful for my mom and dad, who have shown me the true meaning of unconditional love, and who would (and have) done anything possible to make my life easier.

Thankful for my family, especially my brother and sister, who take the time to check in on me during their full lives and have been there every step of the way wanting to know how they can help.

Thankful for my friends, who, when it’s hard to know what to say, let the silence sit between us without judgment, and who provide a steady stream of photos, memes, and stories to keep me laughing.

Thankful for my coworkers, who offer their unflinching support and always say yes to any of my requests for help.

Thankful for my students, who give me reasons to smile no matter how I’m feeling and whose innocence, empathy, and love remind me what’s truly important.

Thankful for my medical team and the Desmoid Tumor community, who have embraced me and guided me through this terrifying maze with a voice of resilience.

I’m thankful for being here and for having so many reasons to fight.

With all its sham, drudgery, and broken dreams, it is still a beautiful world.”  – Desiderata

treatment

Staying Afloat

'Dark Sea', Winterton-On-Sea, Norfolk
Photo credit: Pete Bridgwood

This is not going to be a fun post to read. It was not a fun post to write.

I had another scan this week. If you’re wondering what the results were, I’m going to politely ask you to read this entire post. There’s a reason, I promise.

Monday: Insurance

My scan was on Tuesday, and Monday was an in-service day at work, which meant no students or classes to teach. “Scanxiety” had long ago set in and I was looking forward to a bit of distraction. I walked out of a meeting at 9:45 to find a voicemail from the radiology department of UPenn. The speaker informed me that my insurance company had denied my request for my MRI, which was scheduled for 9:00 the next morning. Furthermore, if I couldn’t get it straightened away by 2 PM, I would lose my appointment slot. I was floored: why was this an issue now and not when I made the appointment back in August? The shock quickly changed to panic. If I couldn’t make my MRI, my oncology appointment the next day would be pointless, and it would take me potentially weeks to get in again.

As I tried to reach the Nurse Practitioner with the Sarcoma Program at Penn, our HR person at work helped me reach my insurance company, since my case manager was not able to be reached. This insurance company put me in touch with a third party that does insurance authorizations and was apparently responsible for the refusal. The third party informed me that I already had an MRI on file and could not have repeat imaging done without winning an appeal of the decision. I finally reached someone at the Sarcoma Program on the fifth try an hour later, and the nurse assured me they’d work as fast as possible. It was 11 AM by now, and we were racing against the clock to get this so I could keep my appointment. As I bounced from phone call to phone call, 2 PM passed. Fortunately, my new best friend in the Radiology Department told me the Director of Radiology would extend the deadline, as the office was actively working to straighten things out.

Does it sound chaotic and stressful? Let me assure you, it was.

At 5:15, I got a call from the Nurse Practitioner that my scan for the next day was on. She shared in my frustration, as she had to reorganize her whole day as well, and apologized that I had to go through it. Then she shared the hold-up: the third party thought I was not currently in treatment.

Tuesday: Scan

I arrived early for my MRI. When I give my name at check-in, the receptionist sighed, “oh, I’m so glad your authorization went through!” (I guess my issue was quite well known at that point amongst the staff at the office.)

I went back to prepare for my scan get the IV for contrast put in. The tech remembered me from the last visit when it took four attempts to get a vein. I was embarrassed – was that my reputation there now?  They got it on the first attempt this time, though they went through a vein in my wrist, which hurt whenever I moved in the slightest. I listened to Queen inside the machine, since I listened to Michael Jackson the first two scans, and I was looking to break my streak of bad luck.

I was ready for good news.

Wednesday: Appointment

I stayed up as late as I could on Tuesday night and tried to sleep in late on Wednesday. My appointment was at 2:15, and I could feel my heart beating through my chest beginning around 9 AM. I did everything I could to keep myself calm and distracted: read, watch Netflix, even practicing hand lettering, which was widely unsuccessful with my shaking hands.

By the time I was ready to go over the bridge, I felt like I was going to get sick or burst out into laughter. At the start of my appointment, the nurse took my blood pressure, which was through the roof. I told her I anticipated as much and described how anxious I was about the appointment. With a wide grin, she said that I sounded like I was on speed.

A few minutes later, my oncologist walked in. He said my tumor was “the same.” Specifically and scientifically, it was the same in two directions, grew two millimeters in the third. I had prepared myself for two results: growth or shrinkage. I knew that if this thing grew, we’d opt for aggressive treatment. If it shrank, we’d stay the course. I hadn’t really thought through what it would mean if I basically got news.

My oncologist suggested another oral chemotherapy. I couldn’t help it: the tears started flowing. I’m sure it was confusing to my doctor; it was confusing to me.

Here’s the best I’m able to explain it: I had worked so hard to get myself comfortable with the idea of more aggressive treatment. I was ready to take time to focus solely on battling this disease and shrinking this thing that’s been only growing since I started treatment in March. (And yes, just a few millimeters still counts to me as growth.) To try a new oral chemo felt like starting back at square one. I was trading fatigue and nausea on one drug for fatigue and edema on a new one. He also shared that it would take six months to chart any change or progress.

I expressed my frustration: I was ready to shrink this thing, and I was discouraged and tired from 9 months of failed treatment. (Hearing that I was tired, my doctor offered that since Desmoids are so unpredictable, I could do nothing and see if it stayed the same on its own. That scared me even more.) It’s not that I wanted more aggressive treatment and the slew of side effects that go with it: I wanted change. And if it meant aggressive treatment to get to a place where I’d have some tumor-free years, sure, bring it. I was less afraid of change than I was of the status quo, of mediocrity, of more of the same. I understand and agree with his call, but it doesn’t hurt less.

The rest of the meeting was talking and listening and to be honest, I don’t remember most of it. What I do remember are the words that have been ringing in my ears ever since: “This could just be something you live with your whole life.”

It was terrifying to hear, but not because it’s the first time I’ve heard it. I’ve just never heard anyone other than the voice in my head say it.

In the Water

The reason I asked you to read this whole entry is that it’s long and frustrating and boring. It’s a glimpse into what my day-to-day life is like living with an incurable form of rare cancer. Despite my best efforts, no one wants to read about battling with an insurance company. It’s just not an exciting narrative.

Being on chemo is like treading water. You’re tired, it’s incredibly overwhelming, and at all times you’re aware there’s a chance you might drown. You see other people swimming perfectly and you’re unable to get into a rhythm. Sometimes you feel like you’ve gotten the swing of it, and others you’re gasping for air desperately trying to afloat. You’re aware that the sun is sometimes shining or the water is comfortable, but it’s not always a thought you can register. You ache for the ability to become buoyant and swim. Imagine then, treading water, while others swim by and tell you that you’re lucky that you haven’t drowned.

I’ve struggled with sharing these scan results and appointment outcomes. When sharing my scan results, I’ve frequently had people suggest other perspectives. I have heard things like “at least it didn’t grow,” or “well, you’re not heading into surgery.” These are both accurate and completely valid points, but it does not change how I feel, especially when sharing the news so soon after my appointment. I’m disappointed and frustrated, and I think I have every right to be. I hope to live well into my eighties and to think that I could be fighting this thing for over 50 years is devastating. I want to get to that place of optimism and determination, and I do think I will. But now, in all honesty, I’m just not. People often comment on my strength, and truthfully, don’t feel stronger than the next person. It’s simply not realistic to act strong all the time, either.

Right now, I’m not feeling strong, I’m feeling tired. I’m feeling frustrated. I’m feeling disappointed. I need some time to regroup and figure out steps I can take in the next few months to feel fulfilled and happy, chemo and all. I think I’ll get there. First, I need to figure out what that means to me.

Thanks, as always, for following along with my triumphs and challenges – and for your willingness to listen.

PS: For a helpful perspective on empathy from someone who studies it for a living, check out this short animation with words from Brene Brown. She’s got some great advice on what’s helpful and what to avoid when speaking with someone who’s facing a challenge.

Uncategorized

Everything & Nothing.

If you’ll indulge me, I have yet another Camino story for you.

20953571_1906999126208055_2262739617955742669_n

When you walk the Camino Frances from St. Jean Pied de Port to Santiago de Compostela, there’s a stretch called the Meseta. It gets its name for the Spanish word for table, mesa, but it’s not notable for much. It is flat and dry, geographically a cross between a desert and Kansas, 220km of nothing to look at. It takes about five or six days to traverse on foot, and if you’re walking in July, it’s fiercely hot. For that reason many people opt to skip it completely, but I did not.

Not much happens on the meseta, but it’s here that the Camino starts to work on your brain. With nothing to entertain yourself, you learn pretty quickly where your mind goes when left to its own devices.

October was my own mental Meseta.

At the end of September, when I last saw my oncologist, he took a look at my routine bloodwork and declared that it looked “stone cold normal.” He also let me know I could book my scan in November and my follow up for the day after – leaving me with an “appointment-free” October.

Originally, this seemed like a well-earned break from the routine. No substitute plans or coverage would be needed at school, which was great, since I always say it’s more work to be out than just go in myself. My mom and permanent appointment co-pilot didn’t need to take time off work.  I could put it out of my mind and coast until just after Thanksgiving.

But in reality, the absence of any medical check-ins during October means that I had more alone time with my thoughts… which is not a good thing when you have dialed up side effects, a big scan looming, and diminishing hours of light in the day. We (myself and my oncologist) acknowledged that this upcoming scan will be a game changer: we’ll see that either this medication has stepped up its game, and we can stay the course, or it’s time for something more aggressive.

With nothing between myself and this immense, looming possible change, I’ve been pulled between the desire to do everything and nothing at all.

Everything.

I burst into tears on the way to work on October 1. I was just driving along, listening to my (rather upbeat) music, minding my own business, and bam. I’m at a stoplight and tears are stinging my eyes and I have absolutely no idea why. As I sat at that traffic light, I had one clear thought amidst all the confusion: “everything’s just happening so fast.” 

It hit me later that it had to do with the date. The first day of October: one month further into treatment and the next month would be my scan. I have been busying myself with directing one production, choreographing another, teaching a class at a local regional theater, and curating a final performance with those students. In an effort to outsmart my own feelings, I’ve been determined to stay as busy as possible… to mixed results. While the logical part of my brain knows to take one step at a time, I get caught off guard in moments where the date, season, or time in general hits me hard. I feel as though I’m at the mercy of a ticking clock, grasping at all the things I wanted to see, accomplish, or achieve, while trying to manage my side effects and keep up my other obligations.

I’m pretty sure this panic over the passage of time is also why, a few days into October, I found myself obsessing over Halloween decorations. I placed an order on Amazon, made things to put on the walls, pulled out the skull-print pillows I made last year, even suspended battery-operated candles from the ceiling to look like floating candles. A few of my coworkers asked if I was having a party, and self-consciously responded that I’m not. I wasn’t even sure why it was so necessary that I decorate.

A few days later, when I was explaining to someone that some of the treatment options that are on the table are lengthy – over a year – it hit me. I guess somewhere subconsciously I decided that if I may not be up for decorating next year, I should do two Halloweens worth of decorations. I didn’t get to all the ideas I had in mind, but that’s mostly because my side effects left me feeling diminished in energy and motivation,

Nothing.

Back in March or April, I wrote that I was protesting the word sick. When I wrote that, I didn’t know what sick could feel like. The most impactful side effects didn’t take effect until a few months into treatment. The increased dose of my medication has built up in my system since the end of August, and nearly everything seems harder now. It’s hard to eat in a way that agrees with me, to get myself out off the couch, to walk my dog in the morning, and just to keep my apartment clean. I had no clue how much I took for granted before.

I was sick for a full weeks in October. I spent one day completely in bed all day, canceling the appointment for a massage I’d excitedly made a few days earlier. I slept for 11 hours for two nights in a row, napping during the day. I’m luckily on the other side of it now, but it hasn’t been without sacrifices. I am not drinking any coffee or alcohol. Raw vegetables leave me feeling nausesous, as do many roasted veggies, so they’re largely out – a bummer for a plant-based vegetarian. I’ve given up most dairy.  What’s left? Well, I have been eating a lot of carbohydrates, with a far amount of juicing in an attempt to keep up with my nutrient intake.

It is a struggle not to measure my days in terms of productivity. I look at the dishes in the sink, the unopened mail, my growing Netflix “Watch Again” lost, and I don’t recognize myself. My time has never been spent this way in the past – I didn’t even own a television until last December.

There’s also someone different in the mirror. My body has grown soft, no longer the physical expression of my love of yoga, running, choreographing, and movement. My hair appears normal, but running a brush through it offers a slightly different narrative. I try to remind myself that I’m just getting stronger in a new way, but it’s hard not to feel your self-esteem shift when your body that you once knew so well is a stranger.

Between Extremes.

So what is one to do?

As I tell my students, you “practice your patience.” You feel what you need to feel, and you get up and go to work in the morning. You savor the moments of in-between, when things seem normal and almost like they were so many months ago. You remind yourself of what’s still there, unchanged, beneath the evidence that piles up and shouts a different story. You snuggle with your dog. You listen to Queen on the way into work and try lots of different harmonies on lots of different songs. You decorate for Halloween.

You find whatever it is that gets you through the day. You hold on tight. And you remind yourself that the sun still shines.

21034572_1906999049541396_4885242661417597445_n

Uncategorized

The 11th Annual DTRF Patient Meeting and the 1st Annual Unicorn Squad Takeover of the Running for Answers 5k

Hi! It’s been a while.

I’ve been meaning to sit down for a few weeks now and get my thoughts on paper, but there simply hasn’t been the time. Since I’ve written last, I started the 2018-2019 school year, cast two productions, began to choreograph one musical, started on directing a full-length play, and started teaching a musical theater class at a local regional theater- all while adjusting to my new daily medication dose. (So, you know, staying busy.)

In all the semi-controlled chaos, there’s been some notable events along the way.

2018 DTRF Patient Meeting

Saturday, September 22 was the 2018 DTRF Patient’s Meeting in Philly. It’s a time for doctors, researchers, and patients to come together to discuss new treatments, studies, and personal experiences. I learned about the patient meeting shortly after my diagnosis and was excited that it was so close to home.

The day before the meeting, I started to feel unwell. I had a cold brewing and the zinc tablets which I normally take to shorten my cold inadvertently made me nauseous. Shortly after lunch, I left work and went home, where I promptly laid down on the couch. I stayed for the rest of the day, only getting up to take Daisy out and fill my water bottle. My stomach hurt, my feet were throbbing, and I felt as though my bones had been replaced with lead pipes. The next morning, I dragged myself out of bed and headed for the meeting. I couldn’t believe it: the one day a year I actually get to meet other patients, and I was in absolutely no mood to socialize. I arrived feeling less than chipper, but miraculously, I turned a corner by the first break. (I’m convinced it was the bagel I was able to eat on the ride over.)

During the presentations, I was learned about recent advancements in treatment. Unfortunately, many of the presentations didn’t apply to me. The most promising study in the Desmoid world is on Nexavar, the drug I’m currently taking. The researcher said that the marker for success is when tumors have shrunk by 30%. Sitting there, I couldn’t help but feel defeated. While it’s exciting for so many others, after 6 months mine has only grown. I’d be happy with only 1% shrinkage, or just for this thing to stop taking over my body! I kept myself from falling into a sour mood with soft pretzels and passing notes to my mom to make her laugh. (Both worked wonders.) There were other two studies which seemed promising on treatments called HIFU and cryoablation, but the researchers mentioned that tumors over 10 cm were usually too large for treatment. In addition, tumors needed to be at least 1 cm away from major nerves for HIFU, and mine is next to my brachial plexus. There was one presentation on a clinical trial that’s coming to Sloan Kettering for which I may be a candidate. The medication works on beta catenin, which is one of the main proteins in the body, through weekly infusions. That trial isn’t launching until next fall, but could be something to consider.

What was most interesting was how even the researchers differed on their approach to desmoid tumors things and their categorization. There was a whole “is it cancer?” segment where one doctor was clear on how these are benign and can be harmless. Another doctor who presented shortly later rebutted with photos of patients with extremely large desmoids and that, while desmoids are “by pathology, benign, they are effectively clinically malignant.” My mom’s assessment: “They’re just so weird!” When I saw my oncologist the following week, he agreed. “After this time of treating them, nothing surprises me about these anymore. They’re completely unpredictable.” We left armed with more information… which, if possible, seemed to make this diagnosis even more strange. I got to see a few people I’d only met via email and get some hugs that were a long time coming! All in all, it was cool to be part of a day that was just about this usually undiscussed diagnosis.

2018 Running for Answers 5k

The next morning, we awoke for the 5k. It was a miserable day, cold and rainy, but I was so focused on my speech and not making a fool of myself that I didn’t pay the weather much attention. I packed my Unicorn Headband, tutu, put on my unicorn socks, and off we went to the race.

umbrell

We arrived early, and I was due to speak a bit after 8 AM. I got hugs from friends and new friends who traveled to be a part of Race Day and paced nervously around until it was my time to get on stage. I hit the stage and left my notes in my bag. I don’t believe in them, unless you’re delivering the State of the Union or needing to quote historical research. I brought mine as a security blanket, in case I panicked. I decided to swallow my nerves and make the speech happen.

42922249_1884857014962617_924909499112751104_o
This is the face of a Very Serious Motivational Speaker.

“I don’t remember much of what I said and didn’t say, really. I’ve copied and pasted my speech below so you can read it for yourself – just be sure to imagine the thunderous applause after I’m introduced and the chants of “CHRIS-TI-NA! CHRIS-TI-NA!” once it’s concluded.

Thank you so much for that introduction! I’m Christina. I’m 29 years old and I am a desmoid tumor patient. I’m also an elementary school teacher, director, and choreographer. I’m used to standing in front of groups of people, but usually they’re under four feet tall. Please forgive me if I ask you to sit criss-cross applesauce and give me listening ears.

I started my desmoid journey months before I was actually diagnosed. I went into surgery a year ago next week and when I was out, the doctors told me they didn’t find anything. I started pinballing back and forth from doctor to doctor. On January 30, the doctor told me he believed it was a sarcoma. And he sent me the next day for a biopsy and an MRI. Two weeks later, I found out I was a desmoid tumor patient.

I got the low down from my doctor on how rare this was and scheduled a lineup of appointments, but hadn’t yet found the DTRF. At one point, I even joked to my friends that it was so rare, there probably wasn’t a 5k! That a 5k would just be me, running down the street.

But then I started doing more googling on desmoid tumors and the DTRF came up. I’m so grateful I found it in those early days. I meticulously poured over each and every page. I was thrilled. And there WAS a gathering for people like me! As agonizing as it was to wait the nearly two weeks for a diagnosis, I finally had a name to rally myself behind. I had my first answer. And I like answers. I’m a teacher – when I ask questions, I expect answers.

That’s why I truly love the name of this 5k. This name tells you exactly what we are all about. There’s a million reasons we could say we are running.  We are not running for hope – we’ve got that. We heard about advances in research yesterday at the patient meeting. We are not running to make a community – we’ve got that too, as anyone who’s been on the Desmoidian Facebook group will tell you. We are running for answers. The answers we have are not enough. Ask any patient here and they’ll tell you the same thing. We listened yesterday at the Patient’s Meeting to how the answers are showing more promise, but we’re not where we want to be.

I love imagining the answers we are running for in the future. A future where, when a patient asks how we treat these things, a doctor can reply: “Here’s exactly how we’re going to beat this.”A future where, when a patient asks if these tumors come back, a doctor says “no.” Even a future where, someday, when someone says they’ve never heard of a desmoid tumor, we can say: “I know. That’s because we found a cure.” You are contributing to finding those answers by being here today.

If you’re here and didn’t know what a desmoid tumor was when you showed up, THANK YOU. If you’re here because you like to run, and you heard about the cheesesteaks, THANK YOU. Because as great as those are, you could get them elsewhere. Your decision to be here is making a difference.

If you are here because you love someone with a desmoid diagnosis, THANK YOU. You drive us to appointments, sit with us during treatments, make us toast when we’re nauseous, and hold our hands when we tell you we are scared. Because of you, we are reminded of why we fight.

And if you are here as a desmoid tumor patient, THANK YOU. Thank you for not letting fear run your life. You are not just a diagnosis. You are a parent, a child, a friend, a coworker, and so much more than just a pathology report. You are a warrior.

Together, we are the ones we have been waiting for. We are the answer to facing this disease.

Thank you!”

With my speech happily over, it was time to walk in the rain. Everyone who walked and ran or just came to hang out was a true champ about it! Once upon a time, before Nexavar started to kick my butt, I had hoped to run the race, but walking it meant that I could chat with my friends who had moved mountains to be there. The route itself was rather pretty, and I’ll be back on Saturday (hopefully this time with sunshine!) for the Lisa’s Army 5k.

42514399_10100242027172599_6931105440738574336_o
The incredible Drew University crew!
42430201_10156089298323409_4923751186739232768_o
Stacie and I, in our usual state of laughing uncontrollably.

After the race, it was time for awards. I had been tracking our fundraising page, so it came as no surprise to me that we won the award for the highest total raised. With $20,551 as our total, we raised 10% of the entire foundation’s goal for the weekend! It was truly incredible to see the fruits of our efforts – truly more yours than mine – become such a spectacular achievement. I’m so grateful to all of you who donated, shared the link, or have been talking about Desmoid Tumors. The more awareness we raise, and the more funds we can allocate for research, the closer we are to finding a way to make the lives of us rare disease patients better.

43066036_1884857121629273_4211844822530523136_o
This year’s patient and survivor photo. All these unicorns in one picture!

When it was all said and done, I felt a bit like I was a part of a wedding. I hear from my friends that are married how the day you’ve been planning for ages can go by so quickly.  That was definitely my experience – I was so focused on making sure other people were happy or knew where to go that I forgot to take a moment to soak it all in. When I realized this at the end of the day, as the stage was being taken down, I smiled. “Thank goodness there’s next year!” I said out loud to no one in particular, and I shuffled off to get ice cream, satisfied that my work there was done (for now.)

ice cream
Make mine a vanilla with rainbow sprinkles.
Uncategorized

Six Months – And A Modern Girl’s Emily Post Guide to Navigating Unfavorable Scan Results

Tomorrow marks six months of treatment on my oral chemotherapy, Nexavar.

I wish I had better news about the results.

I had an MRI last Thursday.  It took three nurses four attempts to get an IV in my wrist for my contrast line. As I was rolled into the machine with headphones over my ears blasting Disney music and instructions to “breathe in, “hold,” and “breathe out,” I could feel my heart pounding and my toes curling. Perhaps you’ve heard the term “scanxiety”? This was it, for sure.

My oncologist was due to call me the next day with results. I left a message in the morning reminding them that I would be waiting for a call. By 4:30, knowing it was a Friday in August, I called again. Perhaps I was walking the line between persistent and annoying, but I was on edge. I had already cleaned every surface in my apartment and run through a good deal of my Netflix list by 3.

When the nurse practitioner called back, it was the news I didn’t want to hear. My tumor has grown. Not significantly, but it’s grown. I would later find out when reading the report they uploaded that it’s now in the periosteum, or tissue covering, surrounding my top two ribs. Surprisingly, they still call this type of tumor growth stable.

Let’s just say I was less than thrilled.

pity

Throwing Yourself a Pity Party

I think pity parties get a bad wrap. When you get a diagnosis like mine, people will often tell you to keep a positive attitude. I get that. I agree. I really try to live it. But it’s impossible to do 100% of the time. You can keep a positive attitude all you want, but you’ve also got to feel what you need to feel without letting it destroy you as you deny it’s there.

When hosting a pity party, as with all parties, you’ll need to carefully consider many factors. Please, allow me to be your guide.

The Location

Make sure you’re in a location where you can be yourself. Your yard, pool, bedroom closet, or bathtub are all great choices. Pity Parties in public places should be avoided at all costs. We’ve all seen these so I don’t need to tell you what a disaster they are.

I often prefer my own home, so I can wear my pajamas.

The Start and End Time

This is arguably the most important factor in hosting a Pity Party. You need to put a firm start and end time on the event. If you do not, your risk walking through the rest of your day, week, or life making other people miserable. The goal is the catharsis, or the release of emotion, NOT to bring the rest of the world down with you. 

When the party is over, you must clean up as though it were a soiree for a dozen friends and move on. If any further clean up is needed, you can reach for Netflix, some art supplies, a meditation app, or my preferred method: call a friend who may be experiencing a tough time of their own. Nothing takes you out of your own head more than being fully emotionally present for another person.

My pity party was in stages. My goal was to get it under control before going back to school on Monday. It went on longer than usual, but it was honestly my first in six months – and well overdue.

The Guest List

pity-party-2

This is critical: pity parties are best-attended solo, or with one or two wisely selected guests. You must inform your guest(s) of the occasion, receive their agreement to the requirements, or go it alone. Make sure these are your tried and true, seen-you-in-worse-situations friends who have fantastic empathy or who would bail you out of jail. Their main responsibility will be to listen, though they may also need to offer you a tissue or an adult beverage.

In this digital age, do not hesitate to phone or text your guests instead of hosting in person if your guests were gracious to agree to your previously discussed terms. A phone call also gives your rockstar friends a great excuse to cut out if need be. Pets also make excellent party guests, due to the fact that they exemplify unconditional love… and can’t respond when you talk to them.

My mom came over, and she was a rockstar about listening as I yelled, cried, and changed the subject every 5 minutes. Daisy was, as always, an excellent sport. I saw a friend Saturday night and a few more on Sunday. All listened extremely well and graciously let me whine.

The Activities

Let it out. Talk about your feelings. Rage if you have to. If you’re going this solo, journaling or doing something physical like deep cleaning a bathtub can be helpful. (Bonus: clean bathtub!) Put on that Coldplay track and cry if you want.

If you’re going to eat or drink, decide what it will be ahead of time- so you don’t find yourself looking at the bottom of a Ben and Jerry’s container after 15 minutes. If you’re needing an adult beverage, stop before you think you should.

Friday, I had some leftover soup, which had ginger in it- perfect for the stomachache I developed waiting for the news. I watched a crafting reality show. Saturday, I watched my favorite: true crime documentaries. Sunday, I went for a walk.

Send a Thank You Card

thank-you-for-attending-my-pity-party-1b964

Thank yourself (and when applicable, your guests) for taking the time to attend to your emotional needs. Remind yourself you are only human, and once your pulse slows a bit, notice what a gift it is to be alive.

Thank you to those of you who helped me get through the last week. You are rockstars.

So, What’s Next?

I met with my oncologist on Tuesday. He agreed with my treatment philosophy, and he didn’t want to settle for “stability” of this tumor either. We discussed our treatment options to hopefully shrink it, and ultimately we decided to try the plan I proposed: to increase my dose back up to 400 mg/day and scan in three months. After my scan results come back at the end of November, one of two things will happen: either I’ll stay on my medication if the tumor’s shrinking, or it will be time for more aggressive care. We talked about some of those more aggressive options. I’m relieved I don’t have to rush into them tomorrow, but I also feel prepared in knowing they may be down the line. I have to say, since everything else is largely unpredictable, it felt really good to be a partner in determining my own care.

Truth be told, I’m more optimistic now than I was even a few months ago. Meeting with my oncologist for the first time since May reminded me that I’ve got an awesome care team who is ready to help me fight, whatever the terms may be. Aside from that, the people who listened to my ranting over the weekend are proven champions who I know are here through the good, bad, and ugly. Both of those things are ultimately more important than the millimeters and centimeters my tumor has grown.

Living with a rare diagnosis is a constant battle. There are challenges at every turn and it’s exhausting. But I am here to fight. With an incredible backing of support, a care team I feel confident entrusting, and a determination to not lose who I am in the chaos, I’m armored up to win.