advocacy

Unicorn Squad: Assemble! I Need Your Help!

Hi, it’s me! Your friend with a rare/orphan disease!

Did you know that desmoid tumors are designated as an orphan disease since it impacts less than 200,000 in the United States? (Hence, the “unicorn” half of the Unicorn Squad title.) As an orphan disease patient, I need your help!

In the Build Back Better plan, there is a proposed cut that would impact the rare disease community in a HUGE way. Here’s what the National Organization of Rare Diseases states:

“Section 138141 of the Build Back Better Act would dramatically curtail the Orphan Drug Tax Credit for qualified clinical testing expenses … The ODTC can help to offset the cost of developing and testing orphan therapies as they move through the clinical trial process” (like my current clinical trial drug!)

I am all for making medication affordable for consumers – trust me, I complain about it a lot… but let’s focus on the main drivers of high drug costs and not the companies that are actually helping people like me.

Please join me in asking Congress to protect the Orphan Drug Tax Credit! It’s quick and easy thanks to the NORD website. Simply click “take action” under the heading “Tell Congress to Protect the Orphan Drug Tax Credit Today!” Then enter your address so your representatives can be automatically populated. Enter your information on the left, and either send the draft letter or add your own language.

Thank you so much, friends. It truly takes a village to protect a unicorn!

With gratitude,
Christina

Uncategorized

September and New Beginnings

September is one of my favorite months. Here we are, three fourths of the way into the year, and we get to start over again! Fresh. There are crisp white lined notebook pages read to be filled, perhaps the chance to get a few new outfits that make you feel a little extra shiny. As Joe Fox says in You’ve Got Mail, “It makes me wanna buy school supplies. I would send you a bouquet of newly sharpened pencils if I knew your name and address.”

This month is also an important month for me because it is Desmoid Tumor Awareness Month. Since 2018, I’ve done my hardest to use this year to educate folks about the reality of this disease while also trying to preach hope. I’m drawing from two different and real feelings.

This year, that’s the place I’m coming from. Reality and hope. I have one foot firmly planted in the pain, exhaustion, and fear of the last year, and the other planted in the hope this new trail drug offers me. It’s pain and progress in equal measure.

I humbly ask that if you are so able, you would consider a donation to the Desmoid Tumor Research Foundation. There are so many places you could generously offer your money, especially in a time when so many have lost so much. What I can promise you is that every penny of that donation goes to fund research for patients like me – because they already have!

YOUR DONATIONS have brought education to pathologists who now know how to more carefully observe confusing biopsy tissue under a microscope.

YOUR DONATIONS have resulted in a consensus paper, the first of its kind, to guide unfamiliar doctors worldwide in the treatment of this rare disease.

YOUR DONATIONS are funding research grants for motivated medical professionals to unlock the secrets of this disease.

Let me tell you more about why this cause means so much to me in this video.

This year, the DTRF chose not to hold its largest fundraising event of the year in person in order to protect the most vulnerable among us. I respect and stand by this decision 100%! What it does mean, however, is that we are drastically behind on fundraising. We usually count on your registrations to fund projects and that’s simply not possible this year.

So please join me in donating to this incredibly important cause! It’s needed now more than ever.

Donate here – and feel free to share!

Thank you, as always for your support. Without it, I would be completely lost.

Love, Christina

Uncategorized

A Long Awaited Update

I have been waiting months to write this blog post – eleven to be exact.

I am finally back in treatment, and this time, it’s something entirely new… so new that the FDA hasn’t even approved it.

Three weeks ago, I started an oral chemo called Nirogacestat. It is a drug that is somewhere in the phase two or three with clinical trials. I had previously not qualified for this trial because my tumor had not grown “enough” in the previous year. Last August, after my liver enzymes rose to meteoric heights thanks to Votrient, my oncologist mentioned receiving the drug through something called compassionate access. Compassionate access, also known as expanded access or compassionate use, means that I’d be able to secure the drug without the study. The benefit would be that I’d receive the drug without the possibility of it being the placebo.

There were so many countless hurdles and many tearful nights I spent waiting for the access to be secured. It meant that my oncologist had to write a protocol specific to me: which, fortunately, was not too hard, since he had patients in the trial and was able to use that to start. After that, the protocol had to go through the Penn IRB, which is basically the ethics board at UPenn. Then it had to go to the Food and Drug Administration for approval, at which point it would then be approved and I would be able to start. I chose not to tell most people what I was awaiting, since I am superstitious when it comes to moments like this.

I experienced so many stops and starts with this drug. COVID held up everything, as it is wont to do. I got a notice the week of my birthday in May that I’d be receiving a call to schedule my first appointment. I was over the moon and called my family and let my friends know. Then there were some snags, of course. Turns out the pharmaceutical company changed the packaging to include 100 pills instead of the previous 90, so the whole protocol had to be reissued to the IRB at Penn. I was then able to sign the all-important consent on June 21, but of course, I ran into even more hurdles. 

I needed to have a baseline MRI completed, and as my medical insurance changed, so did my coverage. While my oncologist at Penn was still covered, radiology was not. I needed to schedule with an outside provider. While that was not the hard part, the provider did not accept digital scans. I needed to be the carrier pigeon: going from Penn to the radiology center in New Jersey, then the radiology center the next day back to Penn. It added about 3 days overall to the process, which seems like ages when you’re awaiting results. Thankfully, my tumor is overall stable-ish (it’s only grown a bit).

Finally, on July 14, I took my first dose at Penn. I wore a tshirt I made with the help of a friend specifically for that occasion reading “je suis prest,” or “I am ready” in French (old French, as many soon pointed out to me.) It’s the motto for the character of Jamie Fraser in Outlander, a series I devoured while awaiting the next phase of treatment. I’m experiencing a lot of the same side effects I’ve come to know from previous treatments, so it makes it easier to manage for the most part.

So here I am. It’s August and I’m taking a social media advocacy break, but I wanted to share with you the latest and let you know I’m still alive and kicking. Hopefully the next swift kick will send this tumor packing.

May be an image of Christina Kosyla and standing

guidance, treatment

What to Pack in Your Chemo Bag

I’m excited to share a post with you today written by Corey and shared from Asbestos.com. She approached me with the idea to collaborate and share with you what you actually need with you at an infusion. (Truth is, I had zero idea when I showed up to Penn and learned over time what was helpful – and what was not.) 

I’ll be sharing my tips and perspective throughout, and I hope this helps you or a patient in your life!

Christina

What to Pack in Your Chemotherapy Bag

For cancer patients undergoing chemotherapy, hospital visits become routine. Whether spending hours in a chemo suite, waiting for your prescriptions to be filled or running lab and blood tests, spending so much time at doctors’ appointments can start to make you feel restless. Chemotherapy can become exhausting—physically and emotionally. 

To make it easier to pass the time and to avoid the restlessness (and sometimes boredom) spent waiting in your doctor’s office, coming prepared with a chemotherapy bag can do just the trick. Bringing along a bag full of activities and other necessities to keep you positive and comfortable can make chemo a bit easier. 

Below, we’ll list some essentials you can bring to your appointments to help pass the time. 

1. A jacket

Oncology units can tend to get cold and if you’ve gone through chemo, you know your body temperature is more sensitive to colder temperatures. Make sure to pack a comfortable and warm jacket to help keep the chill at bay. 

Christina’s tip: there are some great products out there in the event you need port access. You can stay cozy and warm without needing to figure out how the nurse will apply that lidocaine and get you hooked up.

2. A warm blanket

Aside from a jacket, a warm blanket is always a good idea. While some cancer suites may offer you a warmed-up blanket, it’s always good to bring your own in case they don’t. Heated or weighted blankets are great options to bring to help keep you warm during your treatment. 

Christina’s tip: I loved the heated blankets my nurses offered, but they weren’t always the softest. Go for something cozy like fleece or faux sherpa.

3. Snacks

You’ll likely get hungry during treatment, so it’s always best to have some snacks handy. Bringing snacks to munch on throughout the day can help you remain strong and energized. Opt for snacks that are light, high in fiber and filled with vitamins and antioxidants. If you tend to get nauseous pack some crackers for a light snack to help ease your sensitive stomach. Peppermint gum or ginger candies are also great to help curb nausea. 

Christina’s tip: I also brought my own tea with me to each infusion (Earl Grey for the win!) It kept me warm and helped my dry crackers go down easily.

4. Reading Materials 

If you get bored from looking at your phone too long, pack some reading material to bring to your appointments. Pack a new book or a few of your favorite magazines to mindlessly flip through. Chemo suites are usually quiet, making them a perfect place to get lost in a good read. 

Christina’s tip: If you’re too tired to keep your eyes open, try an audiobook! 

5. A journal 

Journaling is a great way for cancer patients to work their way through their feelings and emotions. In fact, many studies show that journaling has a positive effect on patient’s mental health and resilience. Write notes about your treatment experience and journey thus far, or simply journal your way through life’s experiences. Getting your emotions out on paper can be healing and comforting. 

Christina’s tip: Journaling can be a form of escape, too. I used to make lists and itineraries for trips to take when my treatment was over.

6. Lotion 

Chemotherapy can often make your skin very dry. On top of that, constantly watching your hands and being in colder environments can make the skin feel drier. Keep a bottle of lotion handy so you can moisturize when you need it. Try sticking with an unscented option as some fragrances can tend to irritate already sensitive skin. 

Christina’s tip: This is so important, especially since you’re likely washing or sanitizing your hands often and drying them out. Using lotion to keep your skin hydrated also means your skin is less likely to crack, making you less susceptible to germ or virus looking for a way in.

7. Coloring pages 

Coloring is a creative way to pass the time, improve mindfulness and help you focus on something positive. Grab a coloring book full of different pages or download the printable chemo bag HOPE coloring page from Asbestos below. 

Christina’s tip: My nurses had decorated stations at the suite – this would make a lovely thank you to them or caregiver after an infusion! 

8. Headphones 

Music is always a great mood booster and is great for reducing stress. Whether you’re listening to your favorite upbeat tunes or want to relax to some soothing sounds or a guided meditation, make sure you’re including a pair of headphones in your chemo bag. 

Christina’s tip: Bonus points for noise-cancelling headphones that keep the beeping of infusion machines to a dull roar!

9. Cellphone charger

Whether you’re listening to music on your phone, communicating with your loved ones during treatment or surfing through social media, having your phone die is the last thing you want to happen. Make sure you always have a backup phone charger packed and ready to go so you’re never left without your device.  

Christina’s tip: I once had to evacuate the infusion suite due to a suspected gas leak – you never know when a brief trip could turn into a longer one. Bring that charger, not only for your cell phone but all your devices. 

10. Mind games 

Mind games like sudoku or crossword puzzles are a great way to stay busy during treatment while also keeping your brain sharp. Many cancer patients experience brain fog while receiving treatment, often known as chemo brain, but these activities can help clear that fog up a bit. Purchase your own book of puzzles or download the printable word scramble below.


Christina’s tip: Chemo brain is the worst! I loved working on puzzles at home during chemo to keep my spatial arrangement sharp, and a friend shared with me that there are free, fun puzzle apps to enjoy on your phone or tablet. 

Making it a habit to pack a bag to take to your therapy appointments is just a simple way you can make the experience better. Packing all of your favorite snacks, books, games, blankets and other necessities can help make your chemo sessions more positive and comfortable.

Christina Says: Chemo stinks. Pack your favorite things and aim to make it 1% easier.

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?