experience, reflection, treatment

Pinch, Pinch, Hooray: I’m Vaccinated!

I have been long neglecting this blog and wanted to share with you the most exciting recent development: I’m vaccinated!

To share the good news with you, I’d like to share a piece I wrote that was published today on Love What Matters.

In March 2020, I was ready and excited to re-enter the real world. Just a few weeks prior, I had my last chemo infusion for my rare soft-tissue sarcoma and would be shifting to an oral chemotherapy with more manageable side effects. After a year of nausea, couch time, and loneliness, I was ready to return to my job as an elementary school teacher, and in many ways, pick up where I left off. 

I don’t recall where I was when I first heard of COVID-19. There had been reports from China since before Christmas, but I had naively thought of it as a virus that may not reach here. Just in case, I got in touch with my boss at work. “This sounds like it could be really bad, and if it does arrive in the US, it won’t be safe for me to return to the classroom.” This was in January, so that possibility still felt so far off, so remote. I prepared to return to the classroom on March 30, 2020, the day my school returned from Spring Break. Little did I know that I would never again step foot into that school to teach. 

It was March 11, 2020. Though I did not know it, it was the last normal day. I made the decision not to go into New York City to see a Broadway show the day following, because rumors were starting to swirl that things were a lot worse than anyone knew. I’m a bit embarrassed to admit that I cried. I wanted so badly to return to normalcy, to the things I loved, and professional theatre was one of those big things. To comfort myself after declining my ticket, I made a pie for my Aunt’s birthday and drove to have dinner with her and my Uncle. We shared appetizers at the kitchen island and enjoyed our dinner at the table before slicing up the pie. I don’t remember our conversations, which mostly indicates that they were normal, easy, oblivious of what was to come. Before I walked out the door, I got a hug from each of them. It would be my last hug for 366 days.

By 1 PM the next day, we were living in a completely different world. The news of the Broadway shut down made my blood run ice cold. An usher at the show I was supposed to see had tested positive for COVID, and all the productions were going dark to preserve public health. I’ve been a drama teacher and a theatre goer for a long time, and I knew that if New York was willing to sacrifice one of its biggest sources of income, it had to be really bad. It took another week for the rest of my signs of normalcy to disappear, but this will forever be my first indication that things were changing.

The next few days were a blur. My false sense of security had completely vanished, and suddenly I was terrified of everything. As someone who was immunosuppressed from 12 previous rounds of chemo, I was accustomed to obsessively tracking my white blood cell count, an indication of how my body would be able to fight off an infection. Even on the best day, I was prone to immune struggles and was a frequent flyer at urgent care for my own body’s inability to keep itself healthy. I knew that my body would be defenseless against this terrifying virus, one which even the experts couldn’t even comprehend. Other healthy people in my life seemed to be hopeful that it would all blow over in a few weeks, and meanwhile, I waited on pins and needles. I stayed in my apartment, stepping outside only to let my dog out for short bursts. I’m so grateful that I had support in those early days. Two of my friends came to pick up my laundry, since I was terrified to go to the laundromat. They took every precaution, wearing masks and sanitizing the doorknob after opening the door. I ordered my first ever grocery delivery, and shortly after my parents asked for me to make a list of what I needed. At the time, there were even rumors that food would be hard to get, so I was encouraged to get canned goods and enough food for at least two weeks. Looking out my window, I felt nowhere was safe: not even the quiet suburban street where I lived. 

And soon, the rest of the world did hear. Schools shut down. Stay at home orders were issued. We listened to public health figures, clamoring for hope. As the conversation about bubbles and social distancing began, I realized that I was a bubble of one. It was me and my dog, weathering this out together, just as we had my past year of chemo. This time, I couldn’t include anyone else: I was alone. With that realization came the understanding that if I were sick, I’d be doing that alone, too.

What I had not anticipated about the pandemic would be how well my cancer experience prepared me. I was ready to practice every given precaution, many of which were the same ones I kept to when in treatment: fastidiously washing my hands, taking my temperature, watching for signs and symptoms. Mentally, I had an advantage too. Since my diagnosis, I was used to not getting my way, needing to cancel plans I had been greatly looking forward to, or to live in a bleak space of uncertainty. At times I would get frustrated as my peers caught up, saying many of the same things I had for the past year. I listened as they wondered who was sick, or they considered their own mortality, and I swallowed the words “this is what I’ve been saying!” or, “I know, I’ve been doing this for a year already.” 

As COVID continued its tight grip on the country, my cancer experience continued as well. My new medication turned my hair completely white. Since it had no pigment, it didn’t respond to any dye or color. Having not previously lost my hair or had any significant changes due to chemo, I spent nights agonizing over what to do. I made the difficult decision to cut off all my “old” hair and just leave my new color. This meant shaving my shoulder length hair, alone, in my bathroom. I understood that my hair was out of my control – but I wished, so hard, for someone to hold my hand, or for someone to even out the back after I finished my work, just to make it a touch easier. A few weeks later, I faced a huge medical scare when my new treatment threw off my liver counts and for a bit they feared I might have new tumors. Driving into Center City Philadelphia alone and with the possibility that my health could be radically declining was terrifying. Fortunately, that was ruled out, though I needed to come off of my treatment and have bloodwork done each week. This became my only regular excursion out of the house. Even though my medical center is wonderful and took top-notch care, I still felt my body tense as I walked into a building that was not only filled with people, but where COVID testing was conducted. 

My own personal medical scares were unfolding, all the while the country faced shocking loss after loss. I began to hear whispers and confirmations: this family member tested positive, this friend of a friend lost a parent. I felt helpless as the death toll climbed and I knew each one of those was a friend, a family member, a neighbor. In order to manage my anxiety, I started to ignore the news as much as I could. Every time I saw someone who refused to wear a mask, I was infuriated. I was the very person that people needed to mask for. Their refusal to take proper safety measures was putting my life in danger. I felt insignificant and expendable. 

Time passed, in a strange way where it felt like March was just moments and decades ago all at once. My friends started calling it “the before times.” As I was too immunosuppressed to work in-person, I lost my job. Just after that, I celebrated Thanksgiving and Christmas alone. I tried to stay upbeat and surround myself with my favorite traditions, but it wasn’t the same. I ordered dinner for one from a local restaurant. Days melted into nights and weeks. I was still waiting for a new cancer treatment approval from my doctor, and also waiting for a sign of hope from public health experts. I had nothing to look forward to, no dates on the calendar or promises of improvement. I was doing everything I could to stay afloat, but I was exhausted – not to mention terrified of how much longer I’d have to wait this out.

Around Christmas there were rumors about a successful vaccine. I eagerly waited for my oncologist to give me the all-clear, not knowing if with my medical history, it would be safe. He enthusiastically endorsed it, adamantly reminding me that my body needed the protection. One of my best friends, DJ, is doctor who had seen first hand the devastation COVID had caused and had survived COVID himself. As a front line worker, he was the first person I knew to get the vaccine. I not so patiently waited for my state to determine when I could get my shot. I got a phone call from a friend who was able to make an appointment for her parents, and she was willing to try getting me in as well. Filling in my birthday and information from memory, she exclaimed “Ah! It went through! You got it!” Tears of joy filled my eyes. I finally had a date on the calendar, and this time, it would be the one that would deliver me out of the darkness.

My first round of the vaccine was marked with excitement, enthusiasm, and joy. I had expected to cry, but when the moment came, I was all smiles. My aunt and uncle, the same ones I had dinner with before the world shut down, were also there with me. We took photos and excitedly talked about the many hugs to come. The second shot was much more difficult. I was prepared for the side effects which would show that my body was mounting an immune response, but what I was not prepared for was the feeling that it was chemo all over again. I was nauseous, feverish, and my body ached from head to toe. I tried desperately to remind myself that my infusions were behind me, that this would bring me closer to seeing family and friends safely again. I marked two weeks on my calendar for the moment when I would have full antibodies and sent a text to DJ, the doctor I mentioned earlier. “Want a hug on March 13?” I asked. He responded with an enthusiastic “YES!”

When March 13 arrived, I couldn’t sit down. I watched out the window, excitedly awaiting the moment he’d drive up. Yet as odd as it sounds, I had no idea how I would react once he actually arrived. For months, I’d had nightmares in which I’d have a friend over and then realized we were both unmasked. As DJ’s car pulled up, it was still anyone’s guess. But as we walked toward each other, with smiles from ear to ear and tears in my eyes, all my worries slipped away. As we wrapped our arms around each other, I couldn’t help but feel grateful, not only for this moment, but for the fact I had survived all the moments before. I was still living through two simultaneous nightmares, cancer and a global pandemic, but in this moment, I was held, and that was enough.

guidance, treatment

Wigging Out

I’ve been wearing wigs recently. After I stopped treatment on Votrient because it made my liver enzymes bounce on a trampoline, my natural color started growing in again. It was really uncomfortable. I haven’t had this color hair since I was 17, and it’s been growing in with new patterns and textures. So I made the decision at the end of last year to explore wigs.

When thinking about wearing wigs, I was overwhelmed. I was already two and a half years into my cancer experience, and I didn’t know where to turn. Even googling it felt like admitting something I wasn’t ready to yet.

Instead of google, I reached out to my friend Liz who wears wigs due to a chronic medical condition. She met me over zoom and walked me through everything from products she liked, to when to look for good sales, and how to take care of the wigs I purchase. After sharing my new look on instagram, my friend Sara who shares my diagnosis reached out and offered to send me a human hair wig and offer suggestions on how to rock it. Without these two incredibly generous women, I would likely be wearing a wig with half confidence and wondering if I was doing it right. 

When I put on my first properly styled wig, everything changed. There was a bit more confidence in my step. I wanted to take my dog on a walk around the corner, where I’d previously just taken her into the yard with a knit hat on, hoping a neighbor wouldn’t shout hello from across the street.

To wear a wig is a personal choice, but for me, it was a choice that gave me back some power in a situation where so much else had been taken from my control. Some women choose to rock a bald head, or wear beautiful scarves, but for me, I felt empowered by having hair that felt like me. And so, I want to pass on the information I learned from Liz and Sara in the hopes that it helps you, too. 

Wig Purchasing

There are two major groups of wig types: synthetic and human hair. 

Synthetic wigs are cheaper and come in a variety of styles and colors. If there were ever a time to try a new color or cut, now’s the moment to get a fun look with minimal commitment. (I have a friend who prefers to wear a great, purple bob for fun occasions!) Some synthetics are called lace front wigs. This means that when it arrives out of the box, there will be an inch or so of mesh “lace” into which the synthetic hair is sown. I prefer to take a pair of sharp, tiny scissors and cut away at that until it comes just up to, but doesn’t remove, the hairs forming the hairline. Synthetic wigs however have a few limitations. Because synthetic strands of hair are a lot like a fabric, they don’t last as long while keeping the same quality. Think of getting a sweater made from synthetic fabrics and how it “pills” after a while. Synthetic hair also keeps shape, so if you pin some sections of hair back, it’s likely to keep that mark from where the pin was once it’s removed. Synthetic wigs also can’t be styled the way you would human hair with heat tools like a curling iron, so some consider them less versatile. 

Human hair wigs are a preferred by many people, because they can look and feel just like your own hair. You can treat it just like you would the hair on your scalp: braid it, curl it, straighten it, even wash it in the shower. But this luxury comes with a big price tag, to the tune of several hundred dollars. If you have a handful of long-haired relatives who are generous and have hair of the same color, they can donate their hair and then have it made into a wig for you, but the cost for the wigmaker is still high. While this isn’t an option for everyone, it’s definitely an investment that will last you a long time.

Wig Care

Whether you have a synthetic or human hair wig, it takes a good bit of daily and weekly care to keep your investment looking new. I recommend purchasing a few things along with your wig: a wig head or form, wide tooth comb, and a detangling product designed for your type of hair. Additionally, you may want to purchase a felt “headband” that you put on prior to the wig to help keep it in shape.

Here are the basic steps I follow to caring for my wig:

  1. Use your fingers to separate any large tangles. With your wig on the wig form, use your fingers to carefully detangle any knots that may have formed, paying attention to areas like the nape of the neck. With all wig detangling, you’ll want to work from the bottom up. 
  2. After that, you can take your detangling product and spray it on your wig, paying special attention with a synthetic wig not to drench the wig with the product. Then you can use your wide-tooth comb to get out additional knots and snags. Like before, be sure to work from the bottom up.
  3. After your wig is detangled, it’s probably looking better already! I like to take a product, either the same detangler from before or a finishing spray, to spritz lightly around the wig and smooth any remaining frizz. 
  4. Then the tough part – don’t touch it! Let the wig rest to absorb any product you’ve used. For this reason, it can be helpful to do this at night so it’s ready to go the next morning. 

When you’re ready to wear your wig, first put on the felt wig headband according to the directions on the label or the package. Your wig will likely have an adjustable back to keep it tight, with a plastic hook and different fabric loops. I recommend starting with the hook on the biggest setting, so you can tighten as your wig gets worn in and more loose. After your wig is adjusted, then flip both your wig and head upside down, being careful to align it at the front first. Once you flip your head back up, you can do any other minor adjustments like making sure your felt headband can’t be seen, moving pieces forward or back, or tucking strangs behind your ear. After a few times, you’ll have the process down to about 30 seconds – in case you’re running late for that FaceTime or Zoom call.

Just as everyone’s response to losing their hair is different, everyone’s experience with wigs is unique. Remember that you’re in control, and this is just one way to express yourself during treatment or after. Regardless of what you choose, I hope your wig helps you feel beautiful.

experience, guidance, treatment

Cancer Patient Approved Gift Guide

Photo by Kate Hliznitsova on Unsplash

With possibly the strangest Thanksgiving of the last 50 years behind us, many of us are turning our attention to the holidays. (Unless, like me, you put up some of your decorations prior to Thanksgiving because you needed a little Christmas, right this very minute.) If you have a cancer patient in your life, you might be completely stuck on what to give them. Never fear, I’m here to help you, and like Oprah Winfrey, I’ll provide you a list of my favorite things, with a little help from my friends. Sorry, I won’t be giving out cars. I’m not sponsored. Though if there are any takers, I’ll gladly promote you!

GUIDING GIFT PRINCIPLES

First: do a bit of reconnaissance. To provide a gift which is thoughtful and helpful, details are needed to fill out the whole picture of the person’s treatment. Consider things like:

  • What is their treatment plan? Does it involve surgery, chemo, oral chemo, etc.? What side effects are they having?
  • Do they have basic needs cared for? Do they need help with bills, meal train, gofundme, etc.?
  • Are they using any additional therapies? Are they receiving acupuncture, using salt tank floats, etc.?

You can always run a plan by them so you make sure they’re medically cleared to accept your gift. Awkward, I know, but something like, “I’d really like to treat you to x for Hannukah. Is this something you could use right now?”

Second: they might not want anything “cancer-y.” For example, women with breast cancer might not want a pink ribbon on everything. Consider what they enjoyed in their lives pre-diagnosis, because that person is still there under all the patient stuff they’ve needed to endure.

Third: tell them not to write a thank you note. Better yet, tell them they are under no obligation to use what you gave them. This takes the pressure off of the recipient to feel gracious.

SOMETHING THEY WANT, SOMETHING THEY NEED,
SOMETHING TO WEAR, SOMETHING TO READ

Thinking about gift-giving in this way with categories is really helpful, so that’s how I’ve broken it down below. These suggestions are not only from me, but also from other awesome patients who were kind enough to give me their own suggestions when I sent out a call on instagram.

Something They Want

Photo by Delaney Van on Unsplash
  • Gift card for a streaming service. You can get Spotify for music, Hallmark Christmas movies, Disney+.
  • Headphones. This is especially helpful when treatment floors or machines are loud.
  • Pampering. Go for unscented lotions since many fragrances can be bothersome or effect the skin. You can even research oncology massage in you area.
  • Virtual makeup lesson. This is a great gift for patients who are looking to get some confidence back and can offer skills like how to draw on eyebrows, etc.
  • Low-energy ways to spend time. Puzzles and color by sticker books are two of my favorites.

Something They Need

Photo by Eiliv-Sonas Aceron on Unsplash
  • Cash. Cancer is expensive; let them decide where it’s best spent.
  • Gift cards. Food delivery services like Doordash or Grubhub, grocery stores, gas stations are all great, practical ideas.
  • Donation to research. I recommend checking Charity Navigator first to see where your money goes.
  • Water bottle. Staying hydrated when in treatment is super important.
  • Port pillow. If the recipient has a port, it will keep a seatbelt from rubbing up against the it. If you’re crafty, here’s a tutorial to make one on your own.
  • Mastectomy pillows. For a recent mastectomy patient, these are insanely helpful in keeping the arm lifted away from the torso. There are also patterns and tutorials to make your own online.

Something to Wear

Photo by Kate Hliznitsova on Unsplash
  • Alaska Bear Silk Sleep Mask. One of my friends swears by this. She said it is insanely comfy and helps the wearer nap in a bright infusion room.
  • Hygge Jacket. This is a small business that I learned about while attending CancerCon 2019. What’s awesome about this jacket is that it allows for port access without taking the whole snuggly layer off.
  • Blankets. I especially recommend heated blankets or weighted blankets.
  • Socks. I loved wearing fun, cozy socks to treatment! You may want to consider getting slipper socks or something with a non-slip addition to the bottom if the patient is a fall risk.
  • Cozy hats. Especially if hair loss is a possibility, this is a great choice. Having a bald head means you’re really chilly! I really like the company Love Your Melon. Their hats are super cozy and they do lots of great things for the pediatric cancer community.
  • Cozy, soft clothing or pajamas. Are you sensing a theme? Go cozy! If the patient has had surgery to the chest, like a mastectomy, look for things that have buttons that open in the front. If the surgery was in the abdominal area, go for long nightgowns or sleep shirts so there’s no pressure to that area.

Something to Read

*Consider audiobooks to give tired patients a break. Also consider the nature of the book. Does the patient want to read about other cancer stories? If not, you may want to stick to fiction. Also, peruse the book and make sure it doesn’t center on death.

  • Better Together by Jessica Walker. This book features a variety of perspectives from patients with lots of different diagnoses. (You might spot a familiar name in there!) What I love about this book is that it reinforces the idea that there is no one “right way” to do cancer.
  • Everything Happens for a Reason and Other Lies I’ve Loved by Kate Bowler. This book so honestly captured the experience of diagnosis and treatment that I needed to put it down and take breaks from it. Kate is a spectacular writer and human. If you’d like to preview what the book is like, you can check out her TED Talk.
  • Fiction of the pure escapism variety. What’s better than dropping into another universe? My friend Annie sent me a box set of Philippa Gregory books. I also like returning to young adult novels because they’re quick reads and sometimes more uncomplicated.
  • It’s Because Love Big Hug Blanket and Love Heals journal. What is a blanket doing on this list? This blanket comes with tags that the patient’s friends and family can write on or decorate. It gives them something to read when snuggling up at home or in an infusion chair. They also have an amazing Love Heals Journal, which you can fill with messages of love and support for the patient to read.
  • Personal letters, poems, etc. to read when needed. I have so many cards on my fridge or in a box that I open when I need some extra love. Taking a few minutes to put pen to paper gives the recipient something to treasure forever.
  • Jar of positive messages/quotes. This is an idea from a cancer friend. You can write or print messages or quotes on slips of paper, then put them in a jar. You can even get crafty with the jar and decorate it. This would make the perfect gift for someone who is in-patient, because it brightens up their room and reminds them they’re loved.

CAREGIVER LIST

*Do not forget the caregivers. They have a thankless job and need their own care, too.

  • Lend a hand. Offer to babysit. Take care of the leaves in their yard or snow in their driveway. Ask if they would like a meal train set up, or drop off dinner.
  • There Is No Good Card for This by Emily McDowell and Dr. Kelsey Crowe. This book provides amazing advice on how to empathize with a patient. I recommend you read it first, and then pass it along to the caregiver, who can then pass it on to any relatives who need a primer in what not to say.
  • Immune support products. Emergen-C packets, hand sanitizer, tissues are all great because the caregiver needs to stay healthy despite their challenges.
  • Gift cards for coffee. Caffeine is the unsung hero of the cancer experience.
  • Hire a cleaning service. My friends gifted me with this and let me tell you, my apartment has never been cleaner. My tired self was so relieved to lay on the couch without looking at dust.
  • Cancer Cookbooks. The two I love are The Living Kitchen and Cancer Fighting Kitchen. Both come with great recommendations for recipes that help with side effects. They also suggest how to change the taste of meals if the patient’s sense of taste is altered, which is really common.

VIRTUAL GATHERINGS

If you want to celebrate the patient, or just show them some extra love, ask if they’d like a virtual gathering. Ask the patient to choose the date, and offer them a solid out: if they’re not up for it, let them know there’s no problem and you’re happy to reschedule.

  • Christmas Celebration. One of the most meaningful gifts I’ve ever received were boxes of Christmas decorations and cash to buy a Christmas tree. I just had surgery and I was exasperated, bouncing from doctor to doctor, and broke. I still get misty eyed when I take those boxes downstairs and hang them, knowing what love was put into the gift. If it’s not December, who cares! Throw a Christmas in July gathering. Drop off ingredients for frozen hot chocolate and wear red and green on the call.
  • Wig Party. If the patient has recently lost their hair, consider throwing a wig party. Buy a look from amazon and show up on the call looking like Sydney Bristow from Alias. Consider naming the wigs and coming up with silly alter egos.
  • Pajama Party. Ask everyone to show up in their pajamas! You can remind everyone how to play MASH, play music so folks can dance and sing into a hairbrush if they wish, or maybe even a fun remote game of truth or dare. There’s nothing that quite compares to reliving your childhood memories.
  • Movie Night. This got me through my year of infusions last year. With a program like Netflix Party or Disney+’s GroupWatch, you can all watch a movie synchronously. I sometimes prefer the old fashioned way: hit play at the same time! It’s even more fun when you text your way through it. For bonus points, make sure everyone has popcorn.
  • Game Night. JackBox games are especially fun to play. All you need is Zoom and a Party Pack to host!

IN CONCLUSION

It can feel daunting to know what a cancer patient would like to receive. It is especially nerve-wracking when you’re afraid of buying or saying the wrong thing. My suggestion is to just be honest! Say things like, “I’d love to buy you something that makes you feel special or makes your life easier. Here are some things I’m thinking about. Do any of these sound like something you’d like?”

At the end of the day, know that your kindness and generosity will go a long way.

reflection

Empty Hands

Photo by Milada Vigerova on Unsplash

Hello: it’s been a while.

In truth, I thought I’d have good news to share by now. A few things have been in the works for months. And so I have waited, like a child peeking around the corner, hoping to bring you something thoughtful and handmade to show off my craftiness, my perseverance, how hard I’ve worked.

Instead, I’m coming to you now with empty hands. Hands that are a bit unsteady, nails certainly unpolished, perhaps a bit embarrassed with nothing to show for myself.

Even without news, a lot has changed.

While I won’t get into the details, I will share that I’ve lost something that was a huge part of my life and was even before cancer. This seismic shift went unacknowledged by most others involved, leaving me to wonder if it really unraveled the way I experienced it. It reminds me of the TS Eliot poem: not with a bang, but with a whimper. But I was there. Others may have been left unscathed, but I am not.

What should have been a relatively insignificant event also became really impactful this week: I had a haircut. What I failed to realize is how oddly my hair had grown in after going white from Votrient. Different spots on my head grew in at different rates. Before I knew it, the inches of growth I fought so hard for were falling around me in piles. What remained was a buzzcut to make it all even.

Hair is so critical to our identities, and what hurt most is that I wasn’t expecting it. My natural color is back in full force for the first time since I was 17, a time when I was painfully awkward and unsure of myself, desperately waiting for my life to start. It felt full circle: here I am, over a decade later, feeling the same uncomfortable things all over again. So I did what I do best: I cried for two days. I let myself feel sad and awkward and seventeen and angsty. Then I ordered a wig and had a dear friend help me style it until I felt comfortable. The wig has been a huge blessing. It’s helped me regain my confidence, feel relatively normal, and stopped people from staring at me as I walked my dog. (I’ll try to give them the benefit of the doubt: maybe they didn’t recognize me. But the heat of a stare in a small town will make the hair on your neck stand up, I’ll tell you that.)

Why type away while I have seemingly nothing to really report? Well, one, to tell you I’m still here. (Which, I suppose, is always worth mentioning when the majority of your writing is about your health.) Two, to share that sometimes cancer is about waiting and patience. It’s neither the incredible celebration or the devastating scan result: it just is. More than anything, I write because of a sentiment Elizabeth Gilbert shared in an interview with the Good Life Project podcast:

“I like learning in public and growing in public, because I think that it’s a service. Because the people who are kind enough to learn in public in front of me have helped me enormously to change my own life. The turn around time for how long is between when I have a revelation or an epiphany and I want to share it can be anywhere from a few minutes to a few days, but it’s there and if I don’t share it, it feels burdensome on me. I think in the same way in the same way any talent you have that you don’t use becomes a burden, any information that you have about how you survive this journey on Earth that you don’t share is a burden. It’s a burden on you, because it’s meant to be out there.”

I won’t fool myself into believing I’m sharing things worthy of the words revelation or epiphany. But I am, truly, hoping that these words can be a field guild for someone else. At the very least, maybe I can or validate someone else’s grief at their loss of identity, or crying over their hair, or agonizing over the need to wait.

And in the meantime, I’ll be waiting here with my empty hands, hoping and trusting beyond reason that someday soon, they’ll be filled.

Uncategorized

A Surprise.

I remarked to someone back in June that if I were offered a pill that would allow me to fall asleep and wake up in 2021, I’d do it.

I stand by that decision, here in late September, and would probably still take that pill today. But maybe I shouldn’t rush to judgement. I would miss moments like yesterday.

A few weeks ago, I was given the go-ahead by my oncologist to attend appointments I’d postponed in the Spring, the usual things like the dentist or a check up that can’t be accomplished via telemedicine. I went to see one of my favorite practitioners. I only see her about once a year, but she has the way of making me feel so comfortable in her presence. Either she has a spectacular memory or takes really good appointment notes- regardless, she always seems to remember me and ask me about specific details of my life.

She walked in yesterday to my appointment, masked but still bearing the hallmarks of a smile in the crinkle in her eyes. She immediately commented on my hair and how much she loves it. When I told her the whole story- drug side effect, etc. – she leaned in closer to part my hair with her fingers, like you’d play with a friend’s hair.

“And how are you doing?” she asked.

“I’m okay.” I replied.

Furrowing her brow, she lowers her chin and looks at me more intently. “Just okay?”

I was open but brief about some of the chaos swirling in my mind, in particular, how the pandemic has exacerbated it all. How careful I’ve needed to be. How it’s been six and a half months with just being poked and prodded by doctors, no real spirit-affirming human touch. She is present the whole time. Listens, looks me in the eyes, shares her care and empathy with me. The appointment gets under way. Before I know it, she’s telling me something about her dog and her husband and we’re both belly laughing.

We wrap things up and she goes to the door to leave. I thank her, and with no warning she pulls me into a tight hug. I managed to choke out an, “oh, thank you,” and I take a deep breath. “One of my first hugs since March,” I manage. She squeezes me tighter. Her sweater is warm and soft, her tiny frame unexpectedly powerful. We smile at each other as she leaves. As soon as the door clicks behind her, I burst into tears.

The only quarantine hug I’d had prior was a surprise hug in August from my best friend’s daughter. We were eating brunch outside on her lawn, when without warning, her three year old enthusiasm could not be contained. With lightning speed, she rolled over the grass several times onto my picnic blanket, and wrapped her tiny arms around my lap. Knowing how careful I’d been, my best friend looked at me in horror. In an opposing response, I felt my body soften. This hug, so unbridled and joyful, sent waves of calm through my body as I tossed back my head and felt a laugh escape. I rubbed her back and looked into her smiling face. I assured both of them it was ok, it was a special treat. This hug from my doctor felt the same. I could sense the impulsive quality in her embrace, the insistence that this was the only right thing to do.

I am absolutely sure that I would have refused the offer of a hug yesterday, just as I would have cautioned my best friend’s beloved enthusiastic toddler. But once it was underway, I during I didn’t think of risk. I didn’t think of particles or statistics. I didn’t even hold my breath. I deeply inhaled and exhaled. Most assuredly for the only two times in about 200 days, I let myself soften.

Back in the exam room, I pulled myself together. I wiped my eyes with a tissue, readjusted my mask. As I walked down the hallway towards the exit, I heard my doctor with her next patient, laughter just dancing on out through the bottom of the door. What a remarkable thing, I think, to know where your doctor is by the sound of joy she creates in her presence.

Medicine is hard. Being a doctor is hard. Being a patient is hard. Being a human is hard.

Ten, twenty, thirty years from now, I will remember that moment when my doctor saw me not as a patient, but as a person. And it is my hope that when I can safely hug people again- with reckless abandon- I can convey the expansive compassion that was shared with me in that one moment of humanity.

Uncategorized

Just Brave Enough.

Snip, snip.

This is the story of cutting my hair.

I agonized over this decision for weeks. Since May, Votrient had made my hair grow in with a lack of pigment, and that meant that it wouldn’t take any dye (I tried.) It felt sad and limiting to cover my hair up all the time with the same two headbands that were comfortable enough and felt fashionable. My scalp began to hurt more and more. The initial sting of my realization had settled into a dull ache, one I was reminded of each morning as I got ready for my day. Why was this sitting so heavy on me? What was the real issue here?

I sat down to journal and get to the bottom of it.

Here’s what I found: I was afraid simply because it was something I’d never done before, and I had few examples of what that would look or feel like. And beneath that, I was tired of needing to be brave all the time and constantly fighting to meet other people’s expectations.

The words that came to me (truly, that sounds like something out of the Old Testament, but it’s the only way I can describe it) were these: you don’t have to be brave enough for all of it. You just have to be brave enough to do this one thing. The rest can wait.

I knew I was brave enough for this.

I picked the night of the full moon at the beginning of August, since it traditionally represents letting go. I watched Sweeney Todd the night before for a bit of wry humor. I put a few woo-woo earthy items in the beautiful wooden bowl a friend made me: safe, aquamarine, obsidian, and cowry shells. All these were suggested in an episode of Queer Eye when a man was shaving his dreads. (And if it’s good enough for JVN, it’s good enough for me.) My friends Dominique and Dave sent me a pair of clippers from amazon, which I affectionately named Greased Lightning due to the lightning print on the side. I called my friend Alex for moral support. I sectioned my hair into ponytails. When it came time to the cutting itself, I put on Aretha Franklin and got to work. After the first few big cuts, it became easier. That night, I enjoyed the summer rain on my newly short, 7/8 of an inch hair.

Now you see it…
Now you don’t.

It’s important to acknowledge how lucky I was to make a choice. Most people with cancer don’t. It just starts falling out and then it’s time, or to save the grief later they shave it off before it gets there.

And the story continues. Since I’ve been off of Votrient for my sky-high liver enzymes, my hair has started to grow back my natural color. (Dark brown: which many of you, readers, having seen me grow up, probably already knew!) I’m starting to look like I have weird early 2000’s frosted tips. But I would make this decision again every day of the week and twice on Sunday. That day, I took back my control. I’m reminding myself daily that femininity does not depend on long hair. I’m playing with new hair accessories and enjoying a short prep time in the mornings. I’m feeling like more of a badass, if you’re looking for honesty.

And in 2020, who doesn’t need more of that energy?

Uncategorized

COVID and Me

Photo by Annie Spratt on Unsplash

The last time I shared an update with you was March 12. I didn’t know then that the day before would be my last normal day for the foreseeable future. I wish I had taken a moment to savor the hugs I gave my aunt and uncle as I left their house. I wish I had enjoyed being mask-less a bit more. The list can go on and on… but what it comes down to is that COVID descended on the East Coast and has yet to ease its grip on our reality.

There are a few markers of time passing. I started a new oral chemo, Votrient. I went back to work via remote learning. I directed and edited two virtual productions. I had another birthday. I was a keynote speaker at CancerCon. I started leading two online summer theatre programs when school ended. I directed and edited another production.

It’s been almost five months. 147 days of worrying about loved ones. 147 days of relying on others for my groceries or food delivery. 147 days of no physical touch with another person, aside from being poked at for an MRI, lab work, and blood tests. 147 days of calculated small risks. 147 days of wondering when it will be okay to ease up a bit. 147 days of a pit in my stomach named Pandemic taking residence next to another fear: Cancer.

These two overwhelming, enormous sources of fear, anxiety, and change reside next to one another. In all these days that the country been watching the maps change color and numbers rise and fall, I’ve also been monitoring my own non-COVID health. After being on Votrient for 16 weeks, my liver enzymes decided to spike quite high. I was taken off of the drug three weeks ago, and they’re still climbing. An ultrasound came back normal, but the cause remains a mystery. I’m trying to figure that out with my care team now.

I don’t have anything new or exciting to say about COVID-19 that hasn’t been said already. But I do want to explain that for those of us who are immunocompromised, we are at once strangely adjusted to this reality of washyourhandswatchforsignsandsymptoms and also purely terrified of it. Just as I was ending my time on disability, COVID came along. I’ve been on some version of high alert since March 28, 2019 when I had my first chemo infusion… really, I never left.

Especially at first, as others were expressing their discomfort and fear, I was a resentful. “Oh, you feel cooped up in your home? Lonely? Separated from others and fearfully protective of your health?” I had been there, done that, and so often felt completely forgotten. With all that still going on, COVID specific fears settled in to say. When I look at back to school plans, I grow sick to my stomach. I struggle when others’ definitions of “being extremely careful” are vastly different than mine. I grow angry at the selfish so-called patriots who see mask wearing as a limitation on their civil liberties instead of a tool to shorten the lives of others. I often feel that I’m spinning plates: got to keep my own personal health plate spinning, and also be vigilant about COVID, and think about being a living breathing human besides all this, lest all three come crashing down.

So while I have nothing new to say about this virus, or this experience really, I do just want to drive home: those of us with chronic health conditions are not new to this. We can be your sherpas in some ways. (We discovered Netflix Watch Party first, for the record.) But for the very same reason of personal experience, COVID is hitting us in profound ways.

Be patient with us. Understand when we say no to arrangements that challenge our comfort levels. Listen to our very real fear and anxiety, without pushing it away with platitudes. Ask how we can still spend time together.

I want to believe that this pandemic is going away sometime soon. I don’t know how true that is. Regardless, let’s practice being human and kind and understanding and generous with one another. We could all use some more of that.

treatment

Good News in the Midst of Chaos

We could all use some good news- luckily enough, I’ve got some to share!

My tumor is still shrinking, ever so slightly! After a year of Doxil infusions, it’s just under 2 cm smaller. I’ll take it!

*WHILE I HAVE YOUR ATTENTION*

The drug that made this possible is the same drug that makes me immunocompromised. I know what you’re thinking! “But she looks great! Gosh, she’s beautiful! Stunning! Ravishing!” (Aww, shucks! You’re too kind.) Appearances aside, my white blood cell count is below normal range.

So when events are cancelled, or you’re told to wash your hands in excess of 1,500 times while singing your song of choice, remember that COVID-19 precautions are not necessarily about the healthy in our communities. It’s for people like me who were *already* at risk of contracting Lord-knows-what-else. If someone you love is elderly, pregnant, or undergoing chemo, you owe it to them to respect the recommendations of medical experts.

And if you don’t love someone with those conditions, you should STILL be a decent human being and comply! Wash your hands. Disinfect your cell phone. Stay home whenever possible. Order in from a Chinese food restaurant whose business has probably suffered prejudice from the ignorant. Greet people with jazz hands! (I’ve been waiting for this opportunity in particular my whole life.)

You likely come in contact with dozens of immunocompromised people every day without realizing it. Help us, and our terrified white blood cells, stay safe.

Thank you for coming to my guerrilla-style, sanitized TED talk. Be well, my friends!

experience, reflection

You Don’t Look Sick: Illness, Pain, and Being Believed

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I used to think that the weather-induced aches and pains claimed by older family members were no more than old wives’ tales or fodder for small talk after dinner. I didn’t expect to know at 30 just how right they were.

I have a tumor, a rare, soft tissue sarcoma, attached to my clavicle. It’s the size of a grapefruit and has taken over my pectoralis major, pushed my pectoralis minor into my armpit, and grown into my top few ribs. Two years of chemo and counting has kept it from growing into my brachial plexus, though it still seems to taunt me by playing with the nerves that reside there. As a result, my pain can change from day to day, sometimes dependant on the season. In spring and summer, passing showers can be felt. In the winter, as I draw my arms closer to my body to instinctively shield myself from the cold, the three other muscles of my shoulder work overtime for the two compromised by the tumor and tire and tighten easily. A mild winter, like the one New Jersey experienced this year, is a recipe for disaster. When there’s several days of passing rain and cold fronts chasing a few days of warmer temperatures, my pain leaps all over the place.

Pain aside, my appearance is relatively normal. I do not fit the cultural touchstone of a chemo patient. I have not lost my hair from any of my various treatments. I haven’t lost a ton of weight. (The fatigue from my latest treatment has made my lifestyle more sedentary, so I’ve actually gained a bit.) Oftentimes, this “not looking sick” is a blessing. I can enter into a new space, not disclose my diagnosis, and pretend to be someone else for a while. Other times, I desperately wish my appearance would match the war my body was waging on the inside, so others would know the pain I felt.

On a warm late morning in January, a video I made for a cancer organization I support popped up on my feed again. It was several weeks old at this point, but I saw that there were some comments I never read. Out of sheer curiosity, I clicked on them. The top comment read: “you don’t look sick.”

I’d heard it several times before, though never in this form: online, from a stranger. When it is said person, I can typically sense its onset. It usually comes from well-meaning family members or coworkers, usually in an attempt to diffuse the conversation after I describe my litany of side effects from treatment. Most of the time, the person’s intentions are really well-meaning. They want desperately to brighten a disappointment or make me feel good. I appreciate the compliment, most of the time, but there are bad days when I just want to tell the truth: that appearances can be very, very deceiving.

A friend of mine with another illness, cystic fibrosis, shared a tweet about her own experience. Turns out that even though she’s been battling CF her entire life, she got a flood of sympathy when she shared about having a cold. “I’ve been getting sympathy for it all day long. I never get this with my stupid invisible disease! It’s so satisfying to *sound* sick! I’m eating it UP. I will be sad to see this cold go.” When I told her how deeply I related to this, she shared a perfect insight: “[Others] need to see/ feel/ hear it to understand it.”

That stranger who commented on the video of me couldn’t see or feel my pain – and was clearly unwilling to hear my words and believe my experiences.

A wave of emotions crashed over me. Possible responses rushed to mind:

Don’t look sick? I already know: the fact that I do not look sick is likely part of why doctors didn’t take me seriously and my diagnosis took so long. 

Don’t look sick? I am more than the pain and treatment side effects that impact me on a daily basis: so they are not all I talk about. 

Don’t look sick? Interesting: I wasn’t aware that losing my hair, or looking pale, or looking like *anything at all* was a prerequisite to credibility.

Ultimately, I decided not to respond – because the problem is not this one commenter. The problem is the deeply engrained cultural notion that “sick” looks and presents a certain way.

When we assume that people need to look sick in order to be sick, we invalidate their experiences. Suddenly, their pain becomes imaginary, and in turn, their problems feel unimportant. Many patients are already accustomed to not being believed by their own doctors, especially women. According to a 2017 blog post by Harvard Medical School, “women in pain are much more likely than men to receive prescriptions for sedatives, rather than pain medication, for their ailments. One study even showed women who received coronary bypass surgery were only half as likely to be prescribed painkillers, as compared to men who had undergone the same procedure.” Researchers from the University of Virginia published a study in 2016 revealing the even greater disparities for people of color, concluding that “black Americans are systematically undertreated for pain relative to white Americans.”

When we tell people, “but you look great!” it sends a message that putting on a face for the rest of the world is the most important task at hand. The comfort of those around you takes priority over the truth of the patient’s experience.

When we rush to conclusions about someone else’s health based on how they act, we completely discount the importance of mental health, and that those struggles and demons are just as valid as more apparent illnesses. I can’t help but think about those we’ve lost to suicide: some who worked so hard to present as happy for everyone else, or to “fake it til they make it,” but who were fighting their own minds on a constant basis.

We can take better care of each other by getting vulnerable, by stripping away the layers of pretense that we’ve been conditioned to wear as an armor to get through our daily lives. We need to check in on our friends who seem to have it all together. Instead of just “you look great!” consider following it up with, “I know that can be misleading. How are you feeling?” Be willing to get uncomfortable. If my experience has shown me anything, that’s the place where the growth is. That’s where true connection lies.

Continue reading “You Don’t Look Sick: Illness, Pain, and Being Believed”

experience, reflection

Two Years Post-Diagnosis: A Reflection

pathology.png

Two years ago today, I heard the words desmoid tumor for the first time. 

It was a Thursday. It was late, I think – at least later than I expected a phone call from a doctor’s office – maybe 7 PM? The call was from the nurse practitioner in thoracic surgery. She said it “fibromatosis, desmoid type,” and that it was cancer. 

I googled everything I could in the next several hours, voracious. Everything I found said a desmoid tumor was benign, not cancer.*

*My tumor will likely not metastasize, so google called it benign on February 15, 2018, and still does today. Its official classification is an intermediate grade soft tissue sarcoma, and it requires chemotherapy to be managed. I decided to go with my thoracic surgeon’s assessment and call it cancer on February 15, 2018, and I still do today. 

Honestly, it’s remained that confusing as that ever since.

It’s strange to occupy this middle ground, this place where I am never fighting for my life but never permitted to live that life normally again, either. If I’m being honest, it’s a hell of a lot harder than I anticipated. 

I went through this manic, almost giddy phase when I was first diagnosed. My thoughts, internal or spoken, were along the lines of, “okay, life, BRING IT ON! Let me show you what I’m made of! Maybe I’ll be one of those people who RUNS MARATHONS when they get cancer. I’m already a vegetarian, so my body is going to do better with this than most people. I am going to BEAT THIS.” I wrote somewhere in an early blog post that I was protesting the word sick. I didn’t want to think of myself as a cancer patient. I met this like every other challenge I’d been presented with: with the fierce determination only an Irish Taurus could posses. 

But I’ve come to find that this would be unlike any other challenge I’d come up against before. It still is. I know now that I will likely have this tumor for the rest of my life. My goal now is a bit more realistic: to make it smaller so I get my range of motion back and my pain is reduced.

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Hanging out at my most recent infusion, #11.

As two years have passed, my diagnosis has changed me. I remember saying at a CancerCon breakout session last year that I was finding it impossible to go back to yoga and meditation, things that used to bring me peace. I closely associated them with my pre-diagnosis life. It was painful to sit on my mat, unable to enjoy the body I once had, and my quiet mind became a playground for anxious thoughts to take control. A woman in the discussion shared her thoughts, “well, your practice may look totally different now, and that’s okay. Your life is totally different now.” I’m working to accept that I can never go back. It sounds naive, or perhaps just obvious, but when put in practice, the two years of living with this are hard to stack against the 28 years of life “before.” I’m growing to accept that something life-changing does not leave you the same after occupying such a large space in your life. 

Here’s how I’ve seen myself change over the past two years.

  1. I have accepted chaos as truth.

    I used to buy the “sugar feeds cancer cells” myth. I built up this ivory tower of vegetarian cookbooks and essential oils, each ounce of them surely saving me the pounds of cure standard to the traps of American healthcare. Whelp, I’m sorry to tell you: a plant-based diet will not keep you safe. Making your own cleaning products will not save you. And boy, does that suck! It’s easier to feel safe, to feel that our actions are securing health for the future. A handful of people have said to me, “at least you know you did everything you could,” to which I respond, “I wish that were enough.” It just doesn’t work that way, at least not for me. There’s a certain humble reckoning to be had knowing that death, and its henchman, cancer, do not care where you live. They find you anyway.

  2. I pick my battles.

    I still make my own cleaning products, because I’ve got enough chemicals floating around in my bloodstream thanks to chemo, and I’d prefer to cut down where I can. I still love using my essential oils to help me sleep or address a minor ailment. But the illusion that I am in control is no longer at play. I don’t worry as much if my produce is organic. I take more prescriptions because holistic remedies don’t always cut it, they bring me relief, and my body needs them to feel better. The battle picking applies to household tasks as well. I choose more often to conserve my energy for the things that matter to me. I go to Wawa for dinner when I’m straight up too tired to make it. I leave the dishes unwashed in the sink in favor of snuggling up with my dog and watching Netflix.

  3. I make decisions from a place of seeking happiness.

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    I made that! Strawberry pie, which I served with basil whipped cream. Delicious.

    I eat more pie, because I really enjoy the challenge of baking them, and they’re delicious. I stopped watching Handmaid’s Tale on Hulu, because real life was throwing enough downers my way. I spend my money on the things that bring me joy, like travel and holiday decorations that I see every day.

  4. I am more comfortable with being uncomfortable.

    Grief and I know each other better. In the past two years, I’ve lost two dear friends to other forms of cancer. I have also mourned the life I thought I would have for 730 days. While it has been agonizing, I like to think that I am better at speaking with others going through unimaginable moments. Stephen Colbert put it best in an interview with Anderson Cooper. “You get the awareness of other people’s loss, which allows you to connect with that other person, which allows you to love more deeply and to understand what it’s like to be a human being if it’s true that all humans suffer . . . . At a young age, I suffered something so that by the time I was in serious relationships in my life, with friends, or with my wife, or with my children, I’m understanding that everyone is suffering.”

  5. I know that I am more than my career.

    It’s the all-time most common Hallmark Christmas movie trope, doesn’t it? Young, single professional who needs to learn that work isn’t everything? It’s a stereotype for a reason, I think. When you’re driven, have passion, and are given opportunities… it often just happens. But after a year out on disability, I know that the world will still turn if I am not there to deliver a lesson on theatre history.  I will not get a shiny gold star for working when I am truly ill and need to be home. On a really good day, I even feel less guilty for saying no to things, knowing without boundaries I will burn out now more than ever. In addition, having a life outside of teaching makes me a better teacher, because I’m happy and fulfilled in multiple areas of my life. Going forward, I plan to use all 10 sick/personal days that I’m contractually permitted. I’m thankful that I have coworkers who have supported me in setting boundaries and making changes to plans, and I hope to continue seeking fulfillment in all the different roles I have outside of the classroom.

  6. I am connecting with a wider audience about our shared experiences.

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    What a difference a year can make!


    I’ve shared here about CancerCon and just how transformational that event was for me. I loved getting validation of my experiences in a cancer patient space, and I would not have felt nearly as supported going into doxil infusions without that event and the connections I made. Next year, my role is going to grow – I’ve been asked to be a keynote speaker at CancerCon 2020 in Seattle! I’m equal parts humbled, honored, excited, and terrified. I like to remind myself when things are scary that I’m already doing chemo, so as my track record shows, I’ve done harder things. This will be a victory lap in comparison. 

If I had to summarize, I think cancer has made me more human. I’m not a guru, or an influencer, or even really qualified on anything other than my own experience. This is not a place where I will reveal the secrets of “doing cancer well,” because I certainly don’t know what that looks like and don’t pretend I do. This blog is a place of reflection. Writing for you all has helped me process personally, and it’s helped me feel heard publically. 

From the bottom of my heart, thank you for taking the time to be a part of my growth.

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A photo frame from World Cancer Day, February 4.