Category: guidance

guidance, treatment

What to Pack in Your Chemo Bag

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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.

Download word scramble here


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.

guidance, treatment

Wigging Out

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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

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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

Photo by Sharon McCutcheon on Unsplash

*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.

experience, guidance, humor

Postcards from the Edge: Medical Phone Calls Edition

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My friends,
This is my gift to you, written from the brink of insanity. (New year, new deductible, am I right?) This missive was crafted with love and perhaps a touch of sarcasm, but not that much. Laugh if you will, but take its lessons to heart.
– CK

Christina’s Guide to Not Losing Your Ever Loving Mind
Part 1: Making Insurance, Prescription, and Medical Phone Calls

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Photo by Elijah O’Donnell on Unsplash
1. CALL EARLY. This is like tackling crowds at Disney World, but with no joy or fastpasses. If you show up at the same time as everyone else, you will wait in line for four hours, will not get to ride Peter Pan’s Flight, and your party will desert you. Consider off-peak times: find coverage for your desk, use your PTO, or arrange for a babysitter for your children. Accept now that this is unfair and that you have no control over the process. It will save you grief later.
2. PREPARE YOURSELF. Charge your cell phone, regardless of whether or not you are calling from a landline. Keep your external battery close. Assemble all possible phone numbers, mailing addresses, and social security numbers for all parties involved. Gather non-perishables. If you’re treating this like a natural disaster, you’re doing it right. Keep google nearby if they ask for the name of your oncologist’s maternal grandmother, which they will. Make sure you have the ability to make notes. Keep extra pens and pencils on you like you’re taking the SATs. You may not get up from your chair, which leads us to number 3.
3. USE THE BATHROOM. I cannot stress this enough. When you finally get a human being on the line, you do not want to be stuck needing to pee from the cups of coffee you’ve consumed to keep yourself mentally competent.
4. STEP INTO THE OFFICE. If you have the ability, get yourself as relaxed as possible. Climb into the bathtub- no one can see you! At the very least, make yourself a warm beverage to keep yourself tethered to reality. If you’re so inclined, light a candle in honor of St. Monica of Hippo, the Patron Saint of Patience.
5. DIAL THAT NUMBER. Since you already have your member ID number, mailing address, and your second-grade teacher’s name as a security question, you’re ready to go! Dial that number, and make note of the automated menu so you can more quickly access someone in the future.
6. MUTE IS YOUR FRIEND. Place the call on speaker, and then on mute. That way you can hear their annoying hold music, looped over in 30-second increments, but they cannot hear you curse the day private insurance was crafted. Also, remember when I instructed you to go to the bathroom? It’s been three hours and now that you’ve finished that hot beverage, you’ll need to go again. Keep that mute on.
7. START A NEW HOBBY. You’re going to be on hold for a long time. Now is the moment to start that new hobby. Crochet? That blanket will be done before they can connect you through to the proper department, rest assured. In Malcolm Gladwell’s book Outliers, he posits that it takes 10,000 hours to perfect a skill. You’ll be playing the cello like Yo-Yo Ma if you start now. It will also feel slightly subversive and sneaky because they don’t own you. Keep fighting the man, even if it’s with knitting needles in hand.
8. TAKE NOTES. Ask the names of every person you speak to and WRITE THEM DOWN. That way you can specifically reference Sandra in Billing and Matthew in Appeals when you fall to your knees and shake your fist at the sky hours later. Make sure you also note your case number so people know this is not your first rodeo. Ask for direct numbers to specific departments so you don’t have to jump through hoops set aflame by red tape like a circus poodle. Trust me: you do not want to end up at the main menu again.
9. PERFORM A RITUAL SACRIFICE. Put down that knife – no need to get Old Testament about this, Abraham. (You did arrange for that babysitter, right?) You may have already completed this step by using your hard-earned paid time off. Be prepared to prove your devotion once more. Have your credit card ready: they will charge you for medical records. Keep tissues close, in case your tears magically hold any value to anyone you speak with. If they are proven of worth, KEEP THEM COMING. Sacrifice that onion in the back of your crisper drawer and weep like you are at your dictator’s funeral and under threat of capital punishment if your grief is not visibly and audibly quantifiable.
10. COMMENCE SURVIVORSHIP. Wipe the blood from your (hopefully metaphorical) blade. You’ve done it. You’ve survived to see another day, pay another deductible, and wage another war. Celebrate by raising a glass to the fallen or watching an episode of The Golden Girls.
EXTRA CREDIT: Buy a fax machine from Facebook Marketplace. You will likely skip steps 6-9.
EXTRA EXTRA CREDIT: Consider applying for medical school so you can go off-grid in New Mexico and provide your own care.
experience, guidance, reflection

Beauty, Chemo, Remembering to Be Thankful I Do Not Have Malaria

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The Mirror

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Photo by Amine M’Siouri from Pexels

A few years ago, I attended a summer barbeque with a friend- for the sake of the story, we’ll call her April. It was a nice afternoon, and I met several of her friends that I’d never met before. After we left, I mentioned to April how kind they were. When I mentioned one person in particular, April said, “oh, yes, her. I wish you had met her a few years ago. Cancer stole her beauty.” 

I wish I could tell you that this is the point in the story where I told April that was an incredibly cruel thing to say. I wish I could tell you that I stood up for this cancer survivor, this kind woman who chatted with me as we ate pasta salad and shared details about our lives. But I didn’t. I remember that the comment struck me as unfair, but embarrassingly, I didn’t say anything. 

It’s been several years since. April and I are no longer friends, and other details of our friendship are small and widely inconsequential. Those words though – cancer stole her beauty – have continued to ring in my ears, especially in the time since my diagnosis.

When I look in the mirror, I sometimes wonder if someone would say the same about me. Since starting treatment, I’ve noticed I look tired often. I have some new lines around my mouth and eyes when I make certain expressions. I have marks that look like bruises or healed wounds around my feet; my joints are darker and sometimes look bruised or discolored as well. I also have more frequent breakouts, and for a kid who had cystic acne and was on two rounds of Accutane before the age of 16, it plays deeply into my adolescent insecurities. I put on weight from two weeks of Gleevac in December, and it hasn’t gone anywhere as I’ve regained my appetite and I’ve rested more than ever before. I have a noticeable two-inch scar from a deeply misguided surgery and a sizeable growth which raises my chest and extends under my right arm. Maybe it’s because I failed to stand up for the woman with whom I’d eventually share a deeply painful commonality. Maybe it’s because I turned 30 this year. Maybe it’s because these chemicals are truly changing the way my body looks and behaves. But I see someone different in the mirror than I did a year and a half ago. The changes are enough to send me searching for the ways in which I am still me: some days they’re harder to find than the things that have changed.

And underneath it all, a deeper, more complex issue: this cancer started with me. It’s my own cells, my own body, rioting against me. I often wonder if it would be easier to accept a pathogen, to blame an infection, lifestyle choices, even a genetic defect. But this tumor started with nothing else other than me, and ultimately I’m waging a campaign against my own, faulty body.

I’m not writing this to fish for compliments or ask for pity. It’s honestly bigger and more important than all that. Body image, beauty, mortality: these are some complex and entangled issues. I don’t have them figured out and I don’t feel this is the place to try to write a dissertation on them. But I don’t need to tell most of you that to grow up female in America means you absorb countless confusing and damaging messages about beauty and body image. A life-changing diagnosis didn’t do that any favors. Like many other American women, I’m working on sorting and reframe some of those ideas. 

Changing the Conversation

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Photo by Kevin Jesus Horacio on Unsplash

Here’s where my head’s at. We need to change the way we talk about cancer patients, beauty, and their bodies: not just for current patients, but for the sake of those who will someday be diagnosed. When that post-BBQ conversation took place, I could have never anticipated that I’d become a card-carrying member of the Cancer Club just a few short years later. I sometimes wonder if I’d interpret many of my physical changes in my own body as dramatically if I had not internalized hurtful comment. 

I have received countless body-related comments since beginning treatment a year and a half ago, and some of them were unintentionally… well, unkind. When I was on Nexavar last year and constantly nauseous, someone commented, “well, at least you’ll lose a little weight!” As if losing weight is always the ultimate goal for women, or commenting on people’s bodies with unsolicited advice is acceptable. A few months later, I wondered bitterly if this person would say the same thing during an emergency room visit when I was unable to keep down liquids. “Hey,” I would ask her, “am I doing this right?” Food and nutrition during treatment can also be complicated subjects, because food is deeply personal and cancer is deeply painful. When I first announced my diagnosis, someone commented “I’m so sorry. You need to go 100% vegan immediately.” To which I say: let the person on chemo eat what they darn well please. I’ve been a plant-based vegetarian for over 10 years because that works for me. I also ate a Chipwich a day for about a week straight in July, and I have zero regrets, because that worked for me, too. 

There’s another kind of comment that is a bit harder to unpack because it’s well-intentioned, it’s genuinely a compliment, and I’ve said it myself countless times: “you look great!” I appreciate this compliment. I do. The tricky thing is this: it doesn’t always leave room for is the real and present suffering that’s going on just beneath the surface. 

There’s this image we have in our minds when we think of cancer patients: bald, smiling, usually thin. I do not fit that mold. I have, thankfully, kept my hair. I have not lost weight, though I have a reduced appetite and I try to go to the gym to make up for my 23 hours a day of restfulness. Truthfully, I’m really thankful I can skate through most moments in public without looks of pity or confusion. But it doesn’t come without its complications. A cancer patient doesn’t have to “look” any certain way to be a cancer patient. Sure, there are some commonalities – I have yet to see someone my own age on the infusion floor – but with mixed responses to drugs and innovations like Cold Caps, some cancer patients are able to maintain a level of appearance normalcy on a more routine basis.

We know that with everything from mental health to social media, appearances can be deceiving. Mine is no exception. Many of the side effects I’m currently facing can’t be seen or easily measured by others. My fatigue, the way it hurts to swallow, my ocular migraines and occasional vision issues, the pain in my shoulder: you can’t see this stuff. Sometimes it takes all of my energy to shower, and my outside appearance does not match my inner reality at all. So sometimes when I’m told “you look great,” I am just tired, and I want to respond that I would trade feeling normal over looking normal any day of the week. 

Is this making sense? It’s a nuanced thing. I’m trying hard to explain the complexities of this without policing how people speak to me. 

So here’s where I stand: Does receiving that compliment bother me? Personally, no. if I look stunning, and you want to say so, hey sure! Tell me! It might brighten my day. But just know it’s complicated, and every patient feels differently about this. The bottom line is that patients usually just want to have their crappy situation acknowledged, and that goes whether they are wearing jeans and just had an expensive blowout or are wearing sweatpants and a wig. You can tell me how you think I look- but be sure to ask me how I feel.

There is one exception to this rule. Please do not, under any circumstances, tell me that my tumor looks bigger or smaller. There are a number of things that can contribute to my tumor appearing a certain way and 0.0% of them are helpful to my psyche. In the past, comments about “it looks bigger!” or “hey! I think it’s smaller!” have sent me into either 1. an anxiety-filled panic or 2. a joyful optimism which has later ended in a crushing reality. So I learned relatively early on to let my radiologist, oncologist, and the UPenn tumor board measure my tumor – no one else.

What’s Working

A few months ago, I started listening to a podcast called This Podcast Will Kill You, which is hosted by two disease ecologists who discuss infectious disease and related topics. While it sounds grim, it’s actually helped me appreciate the way my body is working- which is great since I often think about (ahem, write this whole blog about) things it is doing wrong. Listening to this podcast I’m reminded that the list of things I do not have is staggeringly long! Malaria, encephalitis lethargica, hookworm, zika, measles, scurvy, hanta virus: my body is doing a pretty good job at not contracting things. 

So when I get stuck on how this tumor has turned my life upside down, I remember to thank my parents for getting me vaccinated and my immune system for doing its darndest to keep me healthy. When I feel sorry for myself for getting wrinkles and feeling really old some days, I try to remember that growing older is a privilege. It’s a fate reserved for very few, and I hope I’m one of them. 

Should that be the case, when my desmoid tumor and I turn 100 years old, you can bet your bottom dollar we’ll be riotously celebrating and eating our smash cake while wearing a crown. For me, there’s just no other way.

cupcake

 

experience, guidance

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

ckosyla

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

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

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

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

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

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

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French or English will do. Image credit.

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

Google it.

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Image credit.

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

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

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

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Image credit.

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

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

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

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

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

Mirror the other person’s language.

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Image credit.

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

Send a card instead.

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One of Emily McDowell’s amazing cards.

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

“There is no good cards for this. I’m so sorry.”
“I’m really sorry I haven’t been in touch. I didn’t know what to say.”
“I’m so sorry you’re sick. I want you to know I will never try to sell you on some random treatment I read about on the internet.”
“I know there’s no normal to go back to. But I’m here to help you build a new one. (And I’ll bring snacks.)”

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

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

A picture is worth a thousand words.

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

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

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

Offer a specific way you would like to help.

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Image credit.

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

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

Do not expect a response and do not disappear.

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Image credit.

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

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

When all else fails, borrow one of these.

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Image credit.

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

Final Thoughts

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

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

guidance

Let’s Play Taboo!

ckosyla

Hello from the final stretch of my Spring Break!

I got out of dodge just in time to avoid that latest snowstorm and enjoyed some traveling and some sunshine. I squeezed in time for a second opinion on treatment as well: an update on all that will come soon.

With the sand of the Atlantic and Pacific beaches freshly shaken from my flip flops, I encountered that common experience of coming home from a vacation and being smacked in the face by reality. Instead of denying it exists or shoving it in some emotional drawer, I decided to do what I find helpful: make it a blog post, so we can all get uncomfortable together!

 

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Just in time for your Easter or Passover gathering!

 

Drop It Like It’s Hot Not Socially Acceptable to Discuss In Public

There are some topics people advise you to avoid at dinner parties and in polite conversation. Cheif among them are money and religion. We all have some relationship to both subjects, even if it’s a lack thereof.

I don’t mind talking about money because I’m a millennial who likes avocados. (If what I’m saying sounds strange, read that linked article. It’s a riot.) To top things off, I teach theology at a Catholic school. I’m well on my way to being the rudest person ever! So in the style of the 1990s Real World, let’s “stop being polite* and start getting real.”
(*As a personal side note, politeness is a personal tenant of mine. In this instance, we can replace polite with “taboo.”)

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I’ll use any excuse I can to make a musical theatre/Liza Minelli reference.

Money
I get medical bills in the mail constantly. 

Every single one makes me panic a little and/or cry. Yes, even though I have health insurance from my employer. Yes, even when I have someone explain it to me. Yes, even while I understand medical care is expensive and qualified people need to be compensated. (It doesn’t help that my policy is technically two companies with separate plans and they don’t communicate with one another, but that’s for another day.)

Medical debt is the leading cause of bankruptcy in the United States. Let that sink in for a bit. It’s absurd. Many of you may already know it. While you are busy saving your life, you are pretty likely to lose your shirt.

When you have cancer, you are constantly paying medical bills. Yes, even though you “beat” it. Yes, even when you are “in remission.” Yes, of course, I’m happy just to be alive. But my expenses have changed drastically. My diagnosis in particular has an extremely high recurrence rate: 30% have a recurrence within five years of initial diagnosis. I will be cut open, treated, or at the very least, scanned every year for the rest of my life. That means I will likely reach my maximum out-of-pocket expense for as long as I live- regardless of what insurance plan I have.

I am a teacher. No one gets into teaching for the money. The money that I started to put aside for a (tiny) home is now dedicated to keeping me healthy. Here’s where things get complicated: while I admire the lifestyle, I am determined not to live like a monk. I want my expenses to be a reflection of life and not a fear of death. My trip to California made me feel great, gave me memories, even alleviated some of my side effects: worth it. A private restorative yoga session with an amazing teacher helped me find some peace with my body: done.

This is not a money grab nor a plea for sympathy. The reason I’m being vulnerable and borderline uncomfortably honest with you is this: those gofundme and youcaring sites asking for help with medical bills are not for people who are any less hardworking or deserving than you and I. They are for people who need help to make ends meet when life has not gone according to plan. If Notorious B.I.G. taught me anything, it’s that money doesn’t solve problems,  but it can alleviate some worries. When you have a diagnosis like cancer, you’ve got enough to worry about and money, unfortunately, is nearly always one of them. Have faith knowing that if you are moved to donate, you’re contributing towards a peace of mind that allows people to focus on their disease and not their declining bank account.

 

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A Disney and a Shakespeare nod in one? Double win.

 

Religion
People will say things that hurt, even when they don’t mean to.

I didn’t give anything up for Lent this year. Instead I practiced patience, especially when people said things that were hurtful. (“Father, forgive them, they know not what they do.”) There is not a lot in my life I can control, but I can start by bettering myself.

There are people that look at me with pity, as though a bell will ring and I will get my angel wings at any moment. I observe them looking for signs that I’m healthy or that I’m not- I’m fairly certain I more or less look the same as I did a few months back. I don’t fit the “bald and brave” image of a cancer patient that may come to mind given television, movies, or even personal experience. I know this reaction is well-meaning and coming from a good place and usually more about the other person than me. Maybe it’s bringing up painful memories of loved ones with a similar struggle or their own fears of mortality. I get it. I was there once, too. They’re scared, that’s okay.

To counteract that, I like to be one step ahead of the joke. I’ll lift something potentially heavy and quip, “I should use this arm while I’ve got it!” Or, as previously mentioned, I don’t use traditional household cleaners, and I’ll justify it with “using them is linked to causing cancer.”

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

When this happens, I remind myself to take a deep breath. I use what Brene Brown calls in her book Rising Strong the “hypothesis of generosity.” Brene suggests that you ask yourself in these challenging encounters, “what is the most generous assumption you can make about this person’s intentions or what this person said?” Often I come back to the same conclusion: it’s more about the other person than it is me. The people I love don’t want to see me suffer any more than I do, and it’s more comfortable to think that things can always be worse. Or there just might not be words to capture what either of us is feeling: cancer’s awkward.

In Christian tradition, today is Holy Saturday. It’s the day between Good Friday, when Christ’s death is recalled and Easter when the resurrection is celebrated. One of my favorite Jesuits (yes, I have favorite Jesuits) Fr. James Martin puts it this way: “Most of our lives are spent in Holy Saturday. In other words, most of our days are not filled with the unbearable pain of a Good Friday. Nor are they suffused with the unbelievable joy of an Easter. Some days are indeed times of great pain and some are of great joy, but most are…in between.” My days since my diagnosis have become mostly a Holy Saturday type of day. I’m wedged between the grief of knowing my life will never be the same and the astonishing bliss of simply being alive.

True faith, to me, isn’t about either/or: it’s about both/and. Things don’t fall neatly into the categories of good or bad. Life can be painful and hard; it’s also astonishingly and profoundly beautiful. Cancer is a burden and a teacher. Money is a blessing and a curse, religion is hard and it makes somethings easy: talking about them is uncomfortable and necessary.

Whenever I leave this place, I hope I leave it better than I found it. It’s my hope that I can use this complicated mess I’ve been handed and become a force for understanding – this little blog my attempt at that. Perhaps it goes without saying, but without readers, it would just be a call out into the digital void. (If a blog is posted in an empty forest and no one is there to read it, does it make a sound?)

Thanks for reading, and if you made it through this whole post, thanks especially for getting uncomfortable. Stay tuned for my next entry: racial justice and politics! (Just kidding… though I do talk about those things often! Feel free to reach out if they are of interest to you as well.)

guidance

The Binder

ckosyla

If there’s one thing I’ve lived by in my 28 years, it’s this: When the going gets tough, the tough get organized.

I often joke that I am type A down to my blood. (I’m type A positive.) My innate control freak nature has been softened over the years through meditation, mantras, and lots of life lessons. What’s left is essentially an elementary school teacher motto (“Do your best, forget the rest!”) and a solid appreciation for office supplies and organization.

It should come as no surprise, then, that when my life was sent into a dramatic upheaval at the end of January, I reached for my best coping strategy: organize it… and for Pete’s sake, make it look pretty.

Why? Well, the two-pocket folder containing documents from my surgery in September was bursting at the seams. When I needed a place to keep all of my documents back in the fall, I naively thought the situation was temporary, so why spend time on a fancy binder? But after my diagnosis, just looking at the thing made me my blood run cold. There was nothing colorful or hopeful about it. While there were so few things in my control, my binder was one of the few I could manage.

One of my rockstar cancer survivor friends sent me in the direction of Michaels, hinting that the DIY method might be right up my alley. (She knows me well.) Here’s the thing: if you’re a three-hole punch,  black “High School Chorale” style binder person, more power to you. I wanted something that was less reflective a diagnosis and more representative who I was as a person. My mom and I spent an arguably absurd amount of time in front of the binder display, debating the merits of a rose gold vs. a teal cover and discussing the kind of dividers we might need in the future.

I’m too ashamed to tell you the total I spent on binder supplies, but I promise that it was done with coupons and teaching discount in hand. I left the store feeling lightyears better about the pile of paperwork, business cards, and medical imaging that would fill the pages. It had nothing to do with the content itself: the reason I felt great was that this binder was suddenly more me.

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Maybe she’s born with it, maybe she spent a few hours watching Netflix, obsessively hole punching medical records and thoughtfully arranging pre-punched pocket folders.

 

In an effort to make this blog a resource for patients who have been recently diagnosed, or if you’re just curious, here are things I added to the binder:

  1. A section on critical contact information for me. It’s easier to copy my Primary Care Physician’s address than to look it up on my iPhone, and I can be sure I’m not giving the wrong zip code for one of the many NJ towns in which I’ve resided. (08043? 08648? 07940? The list is too long to count.)
  2. Copies of my insurance and prescription cards. Especially handy if I someday forget to bring the originals.
  3. A list of current medications I’m taking... plus their frequency, dose, and reason for taking them. I also include the vitamins and supplements I take.
  4. A 2017-2018 calendar with significant dates. I prefer a monthly view: that way I can reference my immediate medical history, doctor’s visits, procedures, and testing with more specificity during appointments.
  5. A section on contact information for my UPenn doctors. I’ve already met with five doctors. Each had at least one Physician’s Assistant or Administrative Assistant. There’s also the file room at the hospital and several pharmacies which I use. When you take into account all my current doctors, plus my previous medical care, that’s a lot of info. I have their numbers in my phone, with UPenn as the last name for reference, but it makes it easier to have it all in one place.
  6. Looseleaf paper. It’s a space for doctors to draw pictures, my own quick doodling in the waiting room, and the jotting down of questions ahead of appointments…. not to mention the concept of leaving space for possibility.
  7. A unicorn sticker. Totally optional. (For me, a non-negotiable.)

And there you have it, my grown-up Lisa Frank creation. I wouldn’t go so far as to say I never leave home without it, but I’m certainly looking to debuting my masterpiece next week at the two-week follow up with my oncologist.

Thank you again, as always, for your countless kindnesses. They have carried me on my way so far and will continue to keep me going in the times ahead.

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Why thank you, binder! You’re pretty great yourself. (This goes for you too, dear reader. Keep on rockin’ in the free world.)

guidance

How Can I Help?

ckosyla

I’ve gotten so many wonderful offers of help from friends, family members, even strangers who have asked how to support me during this time. Your generosity is truly overwhelming!

I’ve put together a list of things that are very much helpful and some things to avoid.

* Important note: We will absolutely both make mistakes. This is my first time with this kind of long-term battle. I may be short-tempered or moody and you might be uncomfortable. It’s okay. We’ll both get through this!

PLEASE DO…

  1. … reach out!

A text saying “thinking of you!”, a story about your dog/cat/toddler, or a quick update on your life are all great things. I’ve gotten so many of these that I recently couldn’t keep up with responses! Do know that even if I don’t reply for hours, days (or ever), I will read it, smile, appreciate your gesture, and send you some love back.

  1. … keep thoughts/prayers/good vibes/positive energy coming!

I can use it! If you feel like you can’t do anything else, trust me, this is helpful.

  1. … stay tuned and read on!

There is so much that’s out of my hands right now, so I really want to control the narrative of my story. I want information to come from me and to dispel any speculation about the current state of my health.

At current press time, there is no need for a “SAVE FERRIS” style water tower. (Probably ever, actually.) To avoid the labor cost of hypothetical and unnecessary painters, you can subscribe to this blog by clicking the blue “follow” button on the right side of the page and receive an email update each time I post. Is your inbox as crowded as mine? You can add this site to your bookmarked pages.

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“Save Christina” doesn’t have the same ring to it, anyway. (Image credit.)

 

PLEASE TRY NOT TO…

  1. … ask me lots of questions about future plans.

I honestly don’t know if I will be able to come to your retirement party/bris/dog’s birthday party. I don’t know how my medication will make me feel on any given day. If you want to invite me somewhere, rest assured I’ll try to be there if I can! (I love parties and free food!)

I don’t know what happens once my first round of targeted therapy is over. There’s a lot up in the air at the moment. Instead of asking me about future treatment, you can ask me questions about how I’m feeling today, about my doctors, and if I am excited about the upcoming season of The Crown on Netflix featuring Helena Bonham Carter. (That answer will be yes.)

  1. … treat me like I am sick.

I want to do as much for myself I can because I am independent, stubborn, and as of right now, not incapacitated. (Fun fact: my first sentence was, “I do it myself.”) If you sense I may be struggling with something, a simple “can I help you with that?” goes miles before assuming I am unable to do something.

  1. … come see me in an overly emotional state.

It’s understandable that you’re upset or shocked about my diagnosis. I would be upset if any of you were diagnosed as well! However, I am focusing on taking care of myself at the present time. If you get a little teary, that’s okay. (I’m bound to as well.) But if you’re sensing a beating of your chest or Nancy Kerrigan style breakdown while shouting “why?!” coming on – a visit may be better at another time.

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Why?! (Sorry, Nance.) Image credit.

I encourage you to seek the support you need as you process this information if it’s deeply affecting you. Therapy is great! Everyone should get therapy! Being in nature or with a pet is also great. In summary, do whatever helps you to process things in a healthy, realistic way.

  1. … assume you know my cancer.

Ok, this is a big one and a hard one. I’m almost 100% sure I’ve broken this one myself. You want to help and you feel powerless: I have, too.

There are a fafillion different kinds of cancer. Mine is going to be different than the next person’s, even if we have the exact same type of cancer. Mine will be different. Desmoid Tumors are rare and rather mysterious. We don’t know much about them or how they behave. I am probably not going to look like most cancer patients you’ve known, because this cancer and its treatment vastly are different than others. If you’d like to offer some information you found, a service, or some treatment, thank you! But full disclosure: I may not take you up your offer or put your recommendation into practice.

The same goes for natural remedies and the like. (FYI, I’m already pretty hippie crunchy granola to begin with, and while I love essential oils, I’m pretty sure they won’t cure my tumor.) If your aunt’s cancer was cured by eating nothing but oranges covered in pink Himalayan salt, that’s great! Thanks for mentioning it, and perhaps I’ll investigate and see if I can find some science to back it up. I’m trusting my gut, some research, and the wisdom of my doctors.

  1. … expect sunshine and rainbows all the time.

I’m going to do my darndest to stay positive, to look on the bright side, and to embrace this all as an adventure – but I can’t promise I’ll be able to do this all the time. Hey, some days, I might just be tired and we both might need the comforting words of Fred Rogers, national treasure and Best Neighbor Ever.

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Mr. Rogers, you were the hero we did not deserve. (Image credit.)

Please be patient as I work through the hard days… and if you want to be safe, approach me with chocolate in hand.