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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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