Uncategorized

Unspoken, Part 2

This post is the second in a series I am writing on the subject of chemotherapy and fertility. It has taken me the most time, intentionality, and courage of anything I have written to date.

As always, the experiences and opinions voiced in this article are mine. My story is not the story of all women, but a tiny piece in the large mosaic of the complex issue of fertility. I wrote honestly and openly – mostly because I wish I had the opportunity to read another patient’s account regarding fertility treatment. The intent of this post is not to overshare, nor is it to cast judgment on others who would, or have made, different decisions. I believe that every person deserves the right to make informed choices about their bodies, and that includes reproductive health.

Last week was Infertility Awareness week in the United States. 1 in 4 men and women struggle with infertility. I believe that the more we share our truths about the complex issue that is fertility, we can help mitigate the stigma and end the cycle of isolation, shame, and grief that is so often at the center of fertility struggles.


The next day at the fertility clinic, I was taken back to a tiny room with no windows. A woman who spoke very quickly and a touch too loudly put photocopied papers about in-vitro fertilization in front of me. She proceeded to draw all over them, numbers and figures and arrows zigzagging and punctuating the infrequent pauses in her sentences. I clung to the facts that I could. I would need to give myself injections for nearly two weeks and come to the office every day for monitoring. The egg retrieval would require me to go under anesthesia, something I deeply feared since my last surgery. Was I married? In a relationship? The doctor cautioned me against freezing embryos with donor sperm, because if I had a partner someday, they may not want to use them. I needed to have an ultrasound today, now, if I wanted to move forward. They’d also need to move my chemo date back. What’ll it be?

I didn’t talk and I didn’t move. Everything was happening on hyperspeed. I felt small and powerless. This was not a woman who knew what to do with an indecisive patient.

She and her assistant talked around me, to each other, to my mom, and suddenly, without any spoken on nonverbal consent from me, she left the room and started preparing the other room for an ultrasound.

I can’t begin to tell you how dehumanizing this was. I may not have known if I wanted an ultrasound or not, but I sure as hell deserved the dignity of being treated as an autonomous human being.

The day continued in tears. Everything was moving faster and faster. I was inconsolable, unable to think of anything else, and desperate for guidance or a sign of what choice I should make. A friend of mine who was navigating her own fertility decisions encouraged me to get a second opinion. She reminded me, gently and lovingly, that even if I did go through with the retrieval, I wasn’t obligated to use the eggs. This was a way to preserve choices and options, something I did not have otherwise. She shared the name of a fertility clinic closer to home, a half-hour away. Over email, the clinic gave me an estimate of cost, and it was a third of the cost of my first opinion. I didn’t want price to be a driving factor, but I’d be lying if I said it wasn’t a consideration.

I went to get a second opinion at the clinic she recommended. This room had windows, which made me feel less claustrophobic, and I came prepared with my own tissues. I explained to the doctor the specifics of my diagnosis and my deeply held fear of surgery and anesthesia. She listened carefully, explained more about the process, and how they could, fortunately, start treatments at any time given my personal medical history, which was really encouraging. The number of days in the preparation and retrieval process varies as they monitor your hormone levels with daily bloodwork. The surgery would likely fall the second weekend of March, and any physical activity would need to be stopped in the days before the retrieval to reduce the risk of any complications.

I hesitated. I was in a production of Peter and the Starcatcher, and we ran for two weekends in March. I had been rehearsing since December, jumping all over boxes and platforms. I had no understudy, and more so, I did not want to miss the one thing I was looking forward to before my life changed for the foreseeable future. When I shared this, there was an undercurrent of judgment, likely a combination of both real and imagined circumstance. I understood that to someone else who knew that parenthood was what they wanted, it sounded insane to choose a community theatre production over having a child. But this was my source of joy, the thing I had to call my own before turning my body over to the imprisonment of chemicals and poison for a term of 6-13 months. I valued this artistic commitment and the fulfillment it brought me over undergoing a costly medical procedure that I wasn’t even sure I wanted.

The doctor proposed another idea. What if we waited, maybe another week? It would delay the retrieval until after the show had closed. I could delay chemo by one week, and I’d be in the clear.

I felt I had found my answer, and that maybe, this time, I could have it all. With tears of relief, I agreed to start fertility treatments.

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The contents of my fridge: raspberry preserves, quinoa, almond milk, spinach, eggs – and three bags of fertility medication.

After a blood test and another ultrasound, it was time to start fertility injections. I was fortunate enough to receive the medication completely free of cost from the LiveStrong foundation. When the box arrived, it was nearly too large for me to carry. I quickly stashed it in the refrigerator, where it would need to be kept to maintain efficacy.

Here’s how a day on fertility treatments looks: I’d have an appointment between 7 and 8 AM almost every morning. They would draw blood, which would be tested for various hormone levels, and perform an ultrasound to see how the eggs were developing. Following the results of the blood test, I would be called, usually by 2 PM, with instructions for that evening. I’d have at minimum one shot to self-administer, usually two, at the same time each evening. It sounded scary, but there were videos to watch online, and soon, they became routine. I would swab a spot near my belly button with an alcohol pad, use either the pre-mixed pen (easy) or would quickly mix and fill a syringe with the hormone shot needed. Soon, my stomach was full of tiny pea-sized bruises as souvenirs of my courage.

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You know the saying: another openin’, another show, another injection.
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The beard really completes the look.

 

 

 

 

 

 

 

 

 

Since I had rehearsals most nights, I’d duck out of running a scene, grab my insulated lunch box with my medication inside, and give myself the injections. Mind you, I was playing Smee (of Peter Pan fame), so I was doing this all in costume while wearing an artfully applied beard. There was an evening that I was a passenger in a car when the time came to give myself the shot. I politely shielded myself from my friends in the backseat and injected at a red light. I even administered the final timed, intramuscular “trigger shot” on a New Jersey Transit train, which thankfully had stopped at Secaucus at 10:31, just sixty seconds after the prescribed and water-tight time of 10:30. I joked to friends that, god forbid, I ever had to do this again – I should start a youtube channel and give myself the shots while skydiving.

Fertility treatments are not insane by any means, but not what I’d call a comfortable process. I constantly felt bloated and like I had basketballs in my stomach. In addition to the emotional weight of the chemo situation and telling my students that I wouldn’t be returning to work, I was pumped sky-high full of hormonal as well. In the final scene of Peter and the Starcatcher, I had to deliver the line, “until one night, many years later, she watched as Peter flew off, with her daughter in tow.” Its emotional significance was not lost on me.

As the end of the process neared, I knew the next hurdle would be preparing to undergo anesthesia, which filled me with fear. The last and only time I went under for surgery was when I thought my tumor was a lipoma, and this nightmare road to diagnosis had begun. In the time since, I have experienced nightmares in which I black out and wake up presumably hours later with no control over what had been done to my body. But through a stroke of luck, one of my best friends who is an OB-GYN works at the center where my retrieval would take place. He promised to get coverage so he could be there to hold my hand as I went under.

As we neared the “any day now” territory, I waited for the call each day that meant my retrieval would take place two days later. The call finally came and the nurse told me it would be two days later, on a Friday. I called my mom and asked her to take off work so she could drive me to the surgical center. Unfortunately, I had called her too soon – just a few hours later, I got another call from the fertility clinic. My retrieval would be Saturday instead. I sent a text to my friend so he could arrange for coverage at work. “Oh no,” he responded. “I can’t be there then, I have a meeting I can’t get out of.” He promised to talk to the anesthesiologist and find out who would be on surgery that day. I understood, and I was so grateful for his help, but I couldn’t help but feel disappointed.

I would face the operating room alone.


To be continued.

experience, treatment

Unspoken: Part 1.

This post is the first in the series I am writing on the subject of chemotherapy and fertility. It has taken me the most time, intentionality, and courage of anything I have written to date.

As always, the experiences and opinions voiced in this article are mine. My story is not the story of all women, but a tiny piece in the large mosaic of the complex issue of fertility. I wrote honestly and openly – mostly because I wish I had the opportunity to read another patient’s account regarding fertility treatment. The intent of this post is not to overshare, nor is it to cast judgment on others who would, or have made, different decisions. I believe that every person deserves the right to make informed choices about their bodies, and that includes reproductive health.

Last week was Infertility Awareness week in the United States. 1 in 4 men and women struggle with infertility. I believe that the more we share our truths about the complex issue that is fertility, we can help mitigate the stigma and end the cycle of isolation, shame, and grief that is so often at the center of fertility struggles.


 

crisis
Image of the sign borrowed from ABC20

There’s a small sign that hangs in my office at school that my coworker was gifted years ago. It reads, “just take it one gigantic, earth-shattering crisis at a time.” I love that sign. It’s honest, isn’t it? Because life doesn’t usually hand us challenges in neat packages. Instead, you get something akin to those Russian nesting dolls. You think you’ve tackled your problems, but as you unpack it and delve deeper, you reveal more and more than you saw upon first sight.

In the middle of March, I was prepared for the start of IV chemo. What I didn’t expect was the life-changing decision I’d have to make before it even began.

The day I agreed to start Doxorubicin is a bit of a blur. Thankfully, I had done my homework on the drug, so as my oncologist rolled through the list of side effects during our appointment, I simply nodded in understanding. I knew that fatigue was the biggest side effect, as well as hand and food syndrome, lack of appetite, nausea, and mouth sores. Check, check, check, check, and check.

I paused when he mentioned there were other, less common side effects that I’d need to sign off on. I was handed a plastic electronic pen with which to sign a consent form. This digital consent form was my acknowledgment that, among other things, there is a small but real chance that my monthly infusions could leave me with leukemia, send me into early menopause, or eliminate my fertility. My oncologist recommended in the next breath that I set up an appointment for a fertility consultation. A nurse from the sarcoma program would coordinate with the fertility office and call me to schedule.

I took a deep breath. I signed.

The next day, while in a tech rehearsal for the musical I was choreographing, I received a phone call from the nurse. The fertility clinic couldn’t see me until April, which would be pointless, as any fertility treatments needed to conclude prior to the start of my treatments. Luckily, there was likely to be a cancellation the next day so I could be seen- provided I could call and confirm in the next fifteen minutes before the end of business hours. I did, sent a text to my mom asking her to accompany me the next day, and quickly shot off a flurry of emails to find a sub for my classes.

As rehearsal continued, I sat and struggled to make sense of what just happened. I googled the cost of egg freezing, the process through which my future fertility would be more possibly secured. I tore through the desmoid tumor patient facebook group, searching for the terms fertility and egg freezing.  I got a vague understanding that this consultation would need to be the start of a much longer, much more involved process than I had anticipated. The weight of this decision slowly settled in.

While this may seem like a cut and dry decision of whether or not to freeze my eggs, there’s something you need to understand about desmoid tumors. Scientists have no idea what causes them, but there is some evidence to suggest that they’re hormonally driven. My own tumor tested positive for estrogen receptors, which indicates that any change or increase in hormonal activity gives the tumor a chance to grow. It’s a common subject of discussion on the desmoid facebook group. Many women shared that their tumor grew exponentially during pregnancy, presumably both from the change in hormones and the inability to treat the tumor while carrying a baby. An article was just published on March 20 of this year with the partial title “Bedouin woman with a dormant neck nodule that grew explosively during her pregnancy.” And while the risk of infertility after this round of chemo was small, I already had this rare disease, this one in a million tumor. A 1% chance of something going wrong had already proven itself 100% possible.

Was I willing to freeze these eggs if even carrying a pregnancy would be that risky? Every woman whose tumor had grown said they wouldn’t change a thing because it meant they had their beautiful baby, but I couldn’t imagine needing to undergo more intense treatment immediately after giving birth to a child. Surrogacy was another option if I wanted a biological child, but with a teacher’s salary, the $70,000 – $100,000 price tag seemed unattainable, especially when adoption was something I would be willing to consider. And then the deeper question: was motherhood something I even wanted? I never had that deep, unflinching “yes, absolutely” when asked if I wanted kids someday that so many people I know carried with them, as certain as their own name. I didn’t worry too much about it, especially since I wasn’t in a relationship, and I was 29. Wasn’t there time to think this all through?

It turns out, I had even less time than I thought. Treatments take several weeks. I would need to begin immediately.

I had 19 hours to make a decision on whether or not I wanted a biological child, and if so, how much I was willing to pay for it. Because while it was a side effect of my necessary chemotherapy treatment, insurance wouldn’t cover a dime.

With exasperation and fury, I remarked to someone that it felt like a bad crossover season of The Handmaid’s Tale and 24. I could barely see past the start date for chemo. How on earth was I supposed to make a level-headed decision about the rest of my life? I paced back and forth across my living room floor, unable to sit down, frantically searching for the right decision.

This is the unspoken battle of any life-altering diagnosis: it robs you completely and utterly of any sense of security. I cried more in those 19 hours than I had in the year since my diagnosis. Grief is not relegated to death, at its core, it is the deep and painful acknowledgment of loss. At 29, I was grieving the loss of a life I thought I would have all over again. Any sense of freedom is derived from having agency and choice, and I was watching my choices disappear behind variables, side effects, life events I couldn’t predict, and dollar signs. I wondered how much more my heart could continue to break and repair itself.


To be continued.

Uncategorized

Accomplished.

It’s been about a month since my last update, and a lot has happened since then. Here are a few updates, which, in an effort to re-frame my personal productivity, I’m calling my accomplishments.

Accomplishment #1: I started a girlmeetscancer instagram!

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I’ve started documenting my chemo journey via instagram. I’m treating it like a mini-blog of sorts, with photos from my infusions, some chemo experiences, and insights I hope can help others. I’ve followed accounts with a similar focus in the past and they’ve been really helpful in making me feel less alone. Already, it’s put me in touch with so many other patients and has served as a great resource.

Accomplishment #2: I survived my first infusion of Doxil!

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The days leading up to the first infusion were worse than the infusion itself. I was an anxious mess: tossing and turning at night, jolting awake multiple times in the middle of the night, constant racing heart and sweaty palms, the whole deal. I was itching to go ahead and get it over with.

I started my Infusion Day with bloodwork followed by an appointment with the nurse practitioner with the Sarcoma Program. She went over possible side effects with me, took my height and weight (update: I’m still 5’2″) and then sent me upstairs to wait for an infusion chair. After waiting for a while, I got a primo spot for the infusion: a corner location with the sun shining through the window.

The nurse came over and gave me a round of three pills: an anti-nausea, a steroid, and (per the nurse practitioner’s suggestion, and my welcome approval) an anti-anxiety med. They gave those about 20-30 minutes to enter my system before finding a vein for my IV. Unfortunately, an abundance of scar tissue has formed around the veins at my elbow crease, and I’m a “tough stick.” After hemming and hawing and consulting a few different nurses, they went with a vein just below my left wrist: a super awkward and slightly painful spot, but if it keeps me from having a port, I’m all for it.

I’m not going to lie, an anti-anxiety med is a marvel of modern medicine for moments such as this. I felt a bit more ease enter the picture, enough to give me a clear perspective and make me feel almost normal again. To any patients considering it, please don’t hesitate to ask for something like that. It can make an extremely overwhelming situation a bit more tolerable. I wouldn’t have thought to mention I was anxious unless a cancer survivor friend of mine suggested it and the nurse practitioner straight up said to me, “I can see how anxious you are. We can do something about it.” Reminder: it doesn’t make you less strong to ask for help, it makes you human. (If you need me, I’ll be repeating that to myself until it sticks.)

And then, I waited. When the infusion began, I got a super metallic taste in my mouth and a heavy feeling in my chest for a few moments, so they stopped the drip until the weighted feeling past. Once it dissipated, I was back as planned to the drip. I read on my Kindle and spent a lot of time talking to the nurses, who were extremely helpful in giving me an overview of the Infusion Suite and its resources.  It took about 90 minutes for the infusion to finish, and when it was nearly finished, I was hungry for the first time all day. Mom and I ordered food and ate it in the park before driving home. It was a fairly long day – my bloodwork was scheduled at 10:45 and I got home around 4.

In the weeks since, I’ve had a laundry list of side effects: chills, fatigue, no appetite, and body aches in the week following, and since, more fatigue, hives, mouth sores, and a metallic taste in my mouth. The biggest one is the fatigue: I’m unable to get out of bed until 1 PM on most days. Some of my side effects, such as hives and the bad taste in my mouth, are triggered by exercise, so I have a theory that I’m sweating out the poison and chemicals. (I’ll make my thesis title sound much more professional than that.) Being on Doxil hasn’t been easy, but it feels more tolerable than the drugs I was on previously, probably because I’m on disability.

Ah, disability. There are days when I’m feeling really good, and being away from work seems foolish and unnecessary. But then a super lousy day will strike, and the side effects circle back… and I know now, three weeks in, that there’s no way I could be the teacher that I want to be if I went into work five days a week. I miss my students and my coworkers daily, but I’m really fortunate to be able to make my health my full-time job.

I’m due for my next infusion on Monday, and already, I feel more relaxed knowing what to expect.

Accomplishment #3: I went to Denver!

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… Wait, what?

Yes! You read that correctly. I went to Denver for an incredible conference called CancerCon.

Here’s how it all went down: remember that instagram account I mentioned? Well, one of the features of Instagram is that it will suggest accounts for you to follow based on “likes” you’ve made, searches you’ve done, and accounts you’ve previously followed. Think of it as low-key algorithm stalking with a purpose. One of the suggested accounts was for an organization called Stupid Cancer, which I’d never heard of before. Stupid Cancer is a group for young adults with cancer, and their instagram account had a post about something called CancerCon 2019 from April 11-14 in Denver. Coincidentally, they invited any new attendees who were not registered to send an email and be in the running for a partial scholarship to attend. I sent an email and made a deal with myself: if I got the scholarship, I’d splurge on the flight. Sure enough, 14 hours later, there was an email congratulating me on my partial scholarship in my inbox. I booked the flight and got my packing list in order so I could leave the following week.

It’s impossible to describe the CancerCon experience without having been there firsthand. It also deserves far more attention and space than I can give it in this overview; I’ll probably return to it for another post later on. So here’s what I want you to know: it felt really, really good to not need to explain myself. I spent four days with other patients and caregivers who also had their lives interrupted by a devastating diagnosis. They were people I had never met, but they were far from strangers: they were the community I’ve been searching for and didn’t know I needed. I won trivia with my team. I placed a respectable third in the scavenger hunt. I listened to people’s stories of pain and struggle and shared my own. I attended breakout sessions and discussions on really meaningful topics. I shared insights, meals, dance moves, tears, and many, many laughs. I made friends who I’ve been texting since the moment I left for the airport. I am overwhelmed with gratitude at having this incredible network of people that I can count on when I need it. If you’re a young adult cancer patient in need of a community, check it out. I promise you won’t be disappointed.

What’s next?

I’m still here, and the weather’s beautiful. I plan on taking lots of walks with Daisy. I’ve been reading a ton of books and expect I’ll do more of that. I’m spending Easter with my family this weekend and I’ve got an infusion coming up on Monday. If the last year has taught me anything, it’s that my expectations will always be challenged in some way, sometimes for the worse, but also for the better. Even if it’s just for today, I’m at peace.

experience, guidance

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

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

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

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

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

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

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

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French or English will do. Image credit.

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

Google it.

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Image credit.

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

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

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

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Image credit.

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

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

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

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

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

Mirror the other person’s language.

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Image credit.

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

Send a card instead.

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One of Emily McDowell’s amazing cards.

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

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

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

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

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

A picture is worth a thousand words.

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

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

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

Offer a specific way you would like to help.

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Image credit.

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

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

Do not expect a response and do not disappear.

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Image credit.

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

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

When all else fails, borrow one of these.

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Image credit.

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

Final Thoughts

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

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

treatment

The Knowing and the Coming to Terms With

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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.

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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.”

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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. 

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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.