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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.

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Everything & Nothing.

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

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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.

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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.

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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.

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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.

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The incredible Drew University crew!
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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.

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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.)

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Make mine a vanilla with rainbow sprinkles.
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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.

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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

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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

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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.

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Legacy.

Last week, the world lost two remarkable women. Both impacted me greatly: one was a colleague and friend, the other, I never met. Grieving is hard. Being as I write to help myself process, I hope you’ll indulge me in reading my processing. I’ll try to honor these women with my words.

Stacy

My friend Stacy was my “room buddy” this past year at school. I needed a spot for my desk, and the first grade classrooms had a corner for me to tuck into. I had admired Stacy since I began working with her. She was effortlessly put together. It was not only her stylish and classic wardrobe (though she certainly had wonderful style), but also the fact that she was the embodiment of grace under pressure. It was a common running joke: when we, her co-workers, weren’t sure what to do in a given situation, we would all look to Stacy. That school year, Stacy and I grew closer, sharing stories over our morning coffee and emails, covering for one another when we needed to duck out of the room, and exchanging silent glances when one of our students said something hilarious.

This winter Stacy distinguished herself as one of those special friends to make a true impact on my life. A breast cancer survivor herself, she walked with me through those scary early days, when I was told to get more scans and tests and when a diagnosis was still on its way. Her text to me the night after my biopsy brought me so much comfort. “Thinking about you Christina and wishing you to have a peaceful sleep tonight. Then some answers soon and moving on the road to recovery!” She sent me another when I announced my diagnosis to my colleagues, telling me how brave I was to tell everyone.

Writing about her in the past tense is hard. It’s unfair.

I once heard someone describe grief as “love with no where to go.” I loved being Stacy’s friend and I loved her for her selflessness in offering support when I needed it most. Now, what am I to do with that love? It makes such little sense to me that my friend is gone. I think about the students she had yet to teach, the husband she loved so dearly, and the son they had only begun to raise. The only logical answer I have in response is to share that love she so freely gave, that love that’s stuck right now as grief.

I hope to someday be someone’s Stacy. I want to be there for all folks that need it, but especially other patients. I will to reach out to that person and remind her how brave she is, even when it’s not yet apparent to her or when she doesn’t feel it. I’m ready to cheer her successes with emojis in text messages and be there for the moments when she feels less than herself. I will pour hope into her when she has nothing left to run on. If I’m lucky, I’ll be half the friend Stacy was to me.

The reading at Stacy’s service included the line, “At night, her lamp is undimmed.” Her light is still shining, bright as ever. It’s just my job now to reflect it.

Shirley

The day Stacy passed, I received an email around lunchtime entitled “A grandma grateful for your gratitude.” It was written by a 95-year-old woman, Shirley, with the assistance of her aid.

Shirley found my old blog, Project Thankful Heart, as well as other gratitude blogs, and wanted to correspond with the writers. She tried to send me an email before, but it bounced back, given that I had de-activated the account a while ago. She was persistent and wanted to make sure the email found me, so her aide suggested various combinations until they found the proper account. Lo and behold, it worked.

Shirley’s shared, “I’m aiming to be more grateful for my life so I’ve been doing my researching for gratitude to feel inspired by others and I came across all of your wonderful ‘blogs’ (as I’m told they’re called). My oh my, what each of you have managed to do as young women astounds me, and how each of have managed to write, oh my heart… Thank you for filling this great grandma’s heart with so much wonder and love.”

And this was just a third of the email.

Naturally, I was in tears by the end and had to respond. I told Shirley how grateful I was for her email and how touched I was by her words. I shared with her the miracle of the email finding me, told her about my new blog, and let her know that I was, in fact, grateful for her.

She responded, “I’m sure your life has changed in a way that you never thought possible- but fear not!  I saw you are a theatre person as well (you can always trust a theatre person from my experiences, you can trust me on that 🙂 ) and if there’s any musical that will get you through this I believe it would be my favorite of all time- “The Sound of Music”.  I see a lot of Maria von Trapp in you and as she herself’d say, “I have confidence”.  I have all the confidence in the world in you, dearest Christina. The deepest of blessings and prayers, Shirley”.

I meant to reply to her and let her know how I played Maria once, that it was my first leading role and how I imagine that, were we the same age in the same class at school, we’d get in trouble with the teacher for talking too much. But the week, with its sadness and its events, got away from me until three days later, when I received an email from her aide letting me know Shirley had passed. The aide signed off, “I don’t know much but if Shirley taught me anything its to not let another moment go by without telling someone how I think and feel. Thank you and her for giving Shirley a great last few days- I know she was so grateful.”

Last week was filled with tears. Reading this email was no exception.

Shirley asked that donations to a local theatre company be made in lieu of flowers. I made sure to follow her careful instructions. I’ve been reminding people that I love them more frequently.

And I think she’d be tickled to see her own words on a real-life blog.

Legacy

We are not guaranteed an amount of time on Earth – but we are challenged to do great things with the time we are given.

Shirley had nearly a century with which to make an impact, and make an impact she did, even up until her final days when she was writing emails to the bloggers she admired. Stacy was here for too short a time, but built a legacy of joy, of gentleness, of compassion, and love.

A colleague at Stacy’s memorial shared many beautiful words. I don’t remember them verbatim, but the sentiment is this: That feeling that we all felt, there in the room together, was love. She challenged us to allow it to transform us.

This past year has shown me how challenges can shape a person’s life in the blink of an eye. Last week was one of the hardest I’ve had in a long, long time. If you’re feeling a bit battered, you’re in good company, friend.

Join me.

Let’s sit with our grief, our challenges, our fear. Let’s make space for one another to cry until it feels ok to laugh again.

You don’t need to have cancer or to know someone who does to be in a hard place. As Anne Frank put it, “How wonderful it is that nobody need wait a single moment before starting to improve the world.”

Let’s keep telling the people around us how we feel about them. Let’s be there for one another when it’s most needed. Let’s see how this love transforms us.

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Quiet is Underrated

Hi, there – long time, no see!

Things have been quiet on the blog for the sheer fact that with life itself has been relatively quiet, for which I’m grateful. You truly learn to love quiet when you’ve been on a roller coaster for almost a year. The past month and change was a mix of good days and bad days, with the good far outnumbering the bad. Here are some updates on the important stuff – with other updates to come.

Fundraising

Back before my birthday, I asked for donations to the Desmoid Tumor Research Foundation. The DTRF is the only organization in the world dedicated to the research and treatment of desmoid tumors, and it’s been a critical resource since I was diagnosed in February. I set a team donation goal of $500 and shared the link here on the blog and on my personal facebook page.

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In a matter of days, I adjusted that goal to $1,000, then raised it again to $2,500. Here we are, three months later, and you have generously donated over $9,300. Never in a million years did I think I’d be fortunate enough to receive that kind of generosity and financial support.

I do not believe that money solves problems, but it certainly makes some issues more manageable. In this instance, your donations are primarily funding grants for research – some of which I’ll be able to hear about in September at the annual Patient Meeting. I mean it when I say that each dollar is one step closer to figuring out how we can treat this and be tumor-free once and for all. I can’t thank you enough.

Running for Answers 5k

The Running for Answers 5k in Fairmount Park is the day following the annual patient meeting in Philadelphia. I’ve seen photos of this event, and if I could design a 5k, this would be it. There is a “crazy socks” contest and post-run yoga. And to sweeten the deal a bit more, there’s free cheesesteaks and ice cream as well. If there is a more Philly way to do a 5k, I haven’t yet heard of it.

What I’m really excited to share is that I have been asked to be the Featured Speaker before the 5k this year (!!) I’ll be sharing a bit about my story, kicking off the race, and doing my best to put all those articulation exercises from years of rehearsal to good use.

I guess this opportunity officially makes me a motivational speaker! I will be drawing inspiration from one of my favorites, Matt Foley.

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Candid photo of me preparing for my 5k speech.

Our team, the Unicorn Squad, met the 15 x 15 challenge, which means that since we had 15 team members by June 15, all the team members will be getting a custom designed Unicorn Squad tshirt. I’ve picked out the color myself and am working with our graphic designer to come up with something fun and memorable!

Heads up: If you want to register for the 5k AND get the Unicorn Squad tshirt, you have to register by August 1. (That’s this Wednesday, in case you don’t have a calendar close.) You can sign up here by clicking “Join Team.” You’re of course welcome to register after August 1, but you won’t be able to receive the tshirt.

*Please note that when you register, a fundraising page will be automatically created for you. Please feel no obligation to raise additional funds. Just having you join us is gift enough!

Physical Therapy

With my treatment now stabilized, I asked my doctor for a script for physical therapy. My amazing PT, Alexandra, certainly had her work cut out for her. It’s hard to pinpoint what is realistic, since I’m not recovering from a specific injury. Since September, I’ve had a loss in my range of motion as well as little remaining strength in my rotator cuff muscles and arm. I felt like I was “picking up” my shoulder and putting it into its socket all day, which quickly tired out and aggravated the muscles around it. In addition to shoulder pain, I had a lot of tumor pain and neck pain as well.

Let’s talk anatomy for a second. You have a group of muscles that contribute to shoulder movement. My tumor is in my pectoralis major and has pushed my pectoralis minor out, towards my armpit. It measured on my last scan 2.2 in by 4.1 in by 2.8 inches. (As a point of comparison, that’s the size of the screen on an iPhone 7 – but 11 times thicker.) So my pectoralis major and minor can’t pull their weight – literally – when doing the work to help my muscles move properly.

What is it like when two muscles have been hijacked and can’t function normally? Imagine you hire a bunch of people to move a piano. They’re all pros, they’ve been in the business for nearly 30 years. They come highly recommended – “the only ones to do the job right!” – and move that baby grand expertly every time. But when they show up to your house, two of the movers have anvils strapped to their backs. The other movers have to try and compensate, get tired out more quickly, and can’t move that piano as well as they did before. Lots of pinched fingers and toes, and maybe a couple of drops. Ouch.

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Let’s just say there were some definite moments I felt like Wile E Coyote.

Yet in a little over a month, the gains I’ve made have been extraordinary. I’m now able to reach my right arm up over my head almost as fully as I normally do on my left. It’s my latest party trick! (This may seem small, but getting dressed just got a heck of a lot easier! I can lift my arm out to my side with less pain and just more of a “click” in the joint. My neck pain is virtually gone. My need for painkillers has decreased immensely, with the stretches and strengthening exercises now helping with feelings of soreness and pain. I’m now able to manage the pain effectively with ibuprofen and the heavy duty meds around once a week, at most.

These small gains make the ordinary seem extraordinary. Before I got out of bed earlier last week, I did one of those big stretches where I stretched from my toes to the tips of my fingers. And it actually felt satisfying. Not like I was holding back or tiptoeing around, hoping not to be in pain. It was the stretch my body had been needing since September.

I think I actually laughed out loud before promptly bursting into tears.

Perspective

After 28 years of normalcy, my life has been thrust in a different direction. It’s easy for me to look around and see the missing pieces. There’s the empty space on my calendar which used to be filled with rehearsals and plans crossed out on days I wasn’t feeling well. I’ve got a pile of wrappers in the trash from ginger candy, which I rely on to get me through days full of nausea. As I cheered my friends who were nominated for Perry Awards this year, I couldn’t help but feel a twinge of sadness that I wasn’t able to perform this past season.

But what’s left is important. It’s not the kind of triumph I’ve celebrated before, but the stakes have changed.

Lately, I’ve been reading a lot of Mary Oliver – she’s one of my favorites.  This poem, in particular, spoke to me on a recent morning:

The Gift

Be still, my soul, and steadfast.
Earth and heaven both are still watching
though time is draining from the clock
and your walk, that was confident and quick,
has become slow.

So, be slow if you must, but let
the heart still play its true part.
Love still as once you loved, deeply
and without patience. Let God and the world
know you are grateful. That the gift has been given.

I lose my way and I keep my head turned to the past. We all do, sometimes. I will stare at my empty plate and ignore the bountiful table set before me. I need to walk slowly when I used to run, and I fill with sadness knowing there might not be a day when I can run again.

But then I catch sight of fireflies in a field, or a sunset in its full glory, or someone will say something so funny I will laugh until my stomach hurts.

I have slowed down. But I am 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

fire

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.