Get creative with me

Welcome to the online portfolio of Betsey Guzior, a creative content specialist with savvy social media skills. I edit newsletters, online and print content and drive forward-thinking strategies for newsrooms.

 

 

 

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Team Follicle

My first thought when the oncologist told me that I should get chemo:

My hair. My beautiful, long, straight hair. All gone.

I can’t recall how long I lived in this anxiety, because within a few minutes he had mentioned that there were ways to save my hair.

Save my hair. Save my beautiful, long, straight hair.

It’s called chemo caps, and it changed my whole outlook on my cancer treatment.

Chemotherapy targets rapidly dividing cells, such as cancer, but its cocktail also goes after your hair, creating hair loss that can range from baldness to complete loss of body hair, including eyelashes and eyebrows.

Chemo caps battle this by keeping your hair (and its cells) on ice.

Used primarily in Europe and Australia, chemo caps are literally frozen caps that you wear during and after your chemotherapy sessions. They cool down your scalp, constricting blood vessels that feed your hair follicles.

By constricting the blood vessels, it’s theorized, the chemicals given during chemo don’t have a chance to reach the follicle, thereby damaging it.

In the last few years, chemo caps are being used in the U.S. The technology on chemo caps ranges from MacGyver-like kits to FDA-approved automatic systems that are increasingly being offered at infusion centers.

 

The cooler from Arctic Cold Caps.

 

I used a kit called Arctic Cold Caps, which works almost as well as the fancy devices. I kept about 60 percent of my hair, and it grew back more rapidly after I was done with treatment.

Using chemo caps gave me a sense of control over the side effects of chemo, and helped me avoid getting stared at as a “cancer patient.” Putting together my plan was my project to manage while doctors took care my health.

It also gave my friends and family  — that my friend Dru nicknamed Team Follicle — the opportunity to do something substantial to help me.

Best of all, I was able to endure chemo without exhibiting most of the tell-tale signs — a gift as I continued working and living almost incognito.

Halfway through my chemo, having a good hair day.

I’ll take you through the steps of getting ready, offer some resources, and give you a few tips on getting the most out of your chemo cap.

Research and prep

The best website to learn more about chemo caps is The Rapunzel Project website. It’s a one-stop resource that compares cap systems, offers the latest medical news on systems, and shares personal stories of women who have used the caps.

While my oncologist brought up the idea of chemo caps, not all physicians endorse the idea. In fact, I needed to educate a few people on my healthcare team. It’s not recommended for anyone going through treatment for blood-related cancers. Chemo caps can be less effective on patients using certain chemotherapy treatments (such as Taxol).

Rapunzel neatly maps out what it takes to do this. There is so much misinformation out there. I searched on Amazon for chemo caps and found reviews that showed me women were not using their system properly.

It takes MULTIPLE CAPS to be worn during and at least three hours after treatment ends.

You must start using the caps with your initial treatment. Otherwise, you will lose your hair after the first treatment.

Prep

You can order a system to be delivered to your home. The kit usually includes a number of caps (made of gel-filled material that will keep cold for 20 minutes), a large cooler, safety gloves and pads to keep your skin around your face from getting frostbitten.

The key is to get the caps cooled down to 25-35 below zero, using dry ice pellets. Dry ice is increasingly available in grocery stores in blocks, but usually only a dry ice dealer will have pellets available. They are put in two-gallon zipped bags (also usually provided in your kit) and placed inside the cap.

They must be cooled down at least 12 hours before you begin your treatment. I usually got my pellets the afternoon before my treatment.

Dry ice blocks can be placed at the bottom of a cooler to further keep the temperature down.

A word about hair. I had mine cut to a bob prior to treatment. Other women keep their long hair. You are not supposed to wash your hair three days prior to treatment, and wait until three days after to wash it again. You will have many bad hair days. But it’s worth it.

The chemo cap process

Specifics vary, but the standard rule is to start wearing the caps at least 45 minutes prior to the administration of chemo. For the first part of my treatment, we put the first one on at home, then traveled the half-mile to the infusion center. There are instructions on how to measure the temperature (my kit came with a temperature gun). The cap, while cooled, only stays that way for about 20 minutes. Then you must change it out for another one.

That’s where Team Follicle came in. At least two people accompanied me to my chemo session, changing caps every 20 minutes and keeping the remaining caps cold. In a typical one-hour chemo, we changed caps at least five times. And we had to keep cold capping for four hours after treatment.

Team Follicle for the first chemo of 2017

My dear friend Alicia was the yoda, showing others how to put the cap on, take it off and maintain the others. I wouldn’t have been able to do this without her.

The other person keeps track of what caps were used, since they need time to cool down. I had a set of eight caps; I would recommend that many be part of the routine. My Amazon search showed that women bought just one cold cap to use throughout their chemo. Just no.

Fortunately, I live close to my infusion center. If you don’t, you’ll have to change your cold cap along the way.

Keeping it tight

You know those “light day” pads used in between periods? I used one of these across my forehead and over my ears to prevent being frostbitten. Yes, I looked that silly.

The cap must be tightly placed on your scalp. That means a little tugging and pulling. Your team member must squish it to your head so the cold can reach as many hair follicles as it can.

How does it feel?

It’s very cold at first, but you get used to the temperature as you go along. Some women give up after the first treatment because they can’t take it. I have a higher tolerance for pain (and an affection for my hair!).

Cost

The cost for my system was about $370 a month, for about four months. My friends and family generously created a GoFundMe page to pay for the expenses.

Why you don’t have to do any of this but still save you hair

In the last two years, the FDA has approved two scalp cooling systems — Dignicap and Paxman — that work through a temperature controlled cap that you don’t have to keep changing out. But not all infusion centers have the systems available. Mine got the Dignicap system just as I was finishing up.

The cost is about $450 for each treatment, but it varies.

In between treatment hair care

You can’t color your hair, have it professionally styled or use a brush on your hair. My kit came with a wide-tooth comb to use.

Some hair will fall out. You won’t be able to get all the follicles. After about two treatments, I had a small handful of hair fall out. I continually thinned out, especially on top. But compare that to losing your hair in big chunks 10 days after your first treatment.

But, in the end, I still had more hair than Donald Trump!

Another perk of the cold caps: My hair began growing back much quicker. After four months, i have a full head of hair.

Click here to see the progression of my hair in a photo gallery on Cancer on the Clock’s Facebook page.

 

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Don’t go changing

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In “The Big Sick,” a romantic comedy wrapped in a health crisis, Emily (Zoe Kazan) talks about how she expected to change after almost dying and being put into a medically induced coma. She was going to do the things she always wanted to do. She was going to be a better person. She was going to see the sun rise every day.

“But then I realized I had to get up early.”

It’s a funny but profound statement on the notion of change. A health crisis such as cancer is disruptive, unplanned and requires a certain amount of emotional energy to get through.

But do you change? Do you want to change?

A friend is determined to live her life differently. She’s organizing events for breast cancer survivors, living her life with zeal and savoring every moment.

I just want things to get back to normal.

I want to waste a Saturday afternoon watching HGTV without guilt. I want to take my dog to a local brewery and savor the latest release. I want to be rewarded in my job for my creative thinking.

But something’s changed anyway. In these last few months, I’ve been reminded of the love that I share for my friends and family. Of the times I’ve helped others selflessly. Of the times I’ve accepted help, especially during chemo with my cold cap patrols.

I haven’t changed. But I’ve appreciated who I am a lot more. In a way, that’s kind of a change.

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The organized cancer patient

ikeabuildingI really didn’t acknowledge to myself that I was about to undergo a major disruption in my life until I went to IKEA.

It was there that I bought some office supplies and storage for papers (bills, statements, medical reports). I ran into some friends and told them what I was doing. They were the first outside my family and longtime friends to know about my diagnosis.

I was getting organized for a deluge of paperwork, appointments, tests and test results.

Like an eager school-age kid shopping for supplies in July, I was ready to get started.

Here, I’ll share some ideas of how I got organized for my treatment, which began with chemo, followed by a lumpectomy and, after unsatisfactory results, a double mastectomy. I’d love to hear how you organized all your materials.

Organizing your cancer life

As a journalist, I love organization of materials, but sometimes let the piles of papers get out of hand. My system for organizing materials addressed both parts of my filing personality.

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I first bought a giant three-ring binder with a notebook, and a pocket to store business cards. This turned out to be pretty helpful, since you wind seeing so many people.

I also got clear plastic page protectors so I could keep test results and other significant paperwork in the binder. As each test result came in, I put it in a protector and added it to the binder in chronological order.

The binder also had a pocket to keep random papers and booklets.

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An oversize box also let me store the different booklets I received for different treatments and helpful guides to enduring chemo and my surgeries.

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Friends gave me a blank journal to keep by my bedside. In it, I was able to jot down questions and concerns as I got them in the middle of the night. I would take them to appointments to write down any instructions or news.

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At IKEA, I bought a covered box big enough to hold 8 by 11 sheets. This was my favorite purchase. I used it to store insurance statements as I got them. When I’m done, I have a pretty box.

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I dedicated a basket to hold cards and well wishes from friends and family. Saving them in one place allowed me to return to them in low points, but also keep track of whom to send thank you notes.

Digital tools

Fortunately, my hospital has a great patient portal to keep track of appointments and tests. Unfortunately, it did not sync to my oncologist nor my surgeons. That’s where Google calendar came in.

Once I got an email of an appointment, I added it to my Google calendar. If you’re not well versed in this, find someone who can help you. It’s a life changer, especially when you’re experiencing chemo brain.

I was able to create events, inform friends and family who needed to know, and get alerts when it was time to leave. I created all these events under a separate Medical category to keep them apart from other appointments.

Another great tool was my Fitbit, which I had just bought before my diagnosis. My Fitbit Charge 2 includes an option to receive text and calendar notifications. As chemo (and chemo brain) progressed, getting notifications of prescription refills, appointments and preparations proved invaluable.

I also downloaded mobile apps for nearby restaurants. You often forget (or don’t care) about eating, but visitors might. We used the Panera app often to feed people visiting me during chemo.

I didn’t use any specific apps for breast cancer, but most either replicate information your can find online or are good to keep a digital journal of your health, including fatigue level and mood. Read the reviews and look closely at the features before downloading — some of these are designed to market to you.

A note about thank you notes

As a Midwesterner living in the South, I learned about the obligation to send thank you notes to people. And there were many to send — those who helped keep my hair during chemo, those who sent gifts, cards and encouraging texts, those who reached out of the blue.

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During my first surgery recovery from a lumpectomy, I used the digital app Ink to send personalized postcards using photos of my friends and family.

That basket where I stored get well wishes came in handy to find addresses of others to send a thank you card.

Yet, I still behind. But I’m not stressing about it. During my last time off — to recover from a double mastectomy — I did not feel as productive. Thank you notes will have to wait. Emily Post has guidance if you need it. She says an acknowledgement of the gift — which you can do through a post on social media or an email — can be enough until you are fully recovered.

What are your strategies for being organized as you deal with breast cancer treatment? How did you organize your insurance papers and statements? How are you keeping track of your test results? Share your ideas in the comments.

 

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The Cancer Card

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I’ve joked that I need to make cancer cards — literally business cards that list my type of breast cancer.

I can’t remember all the specifics without looking at my notes. I memorized my type of cancer — invasive lobular, left breast — immediately, but after some tests that further identified my condition, I lost the urge to know more.

The one other thing I remember hearing, in a room after a random doctor who was tasked with delivering the diagnosis, was the nurse navigator telling me, “good news. It’s low grade.”

I took her word for it.

So, for months, when asked about my cancer, I would say, “invasive lobular, left breast, low grade.” Little did I know that what I didn’t memorize would set the course for my treatment and my future.

I’m still thinking about those business cards. I’m post-chemo, past a lumpectomy and  double mastectomy, facing a year of medication and a lifetime of medical surveillance. I might be able to say I had breast cancer, but right now, breast cancer has me around for a while, whether I like it or not.

Shortly after my diagnosis i decided I needed to handle this like a project. Manage my job responsibility between chemo sessions. Secure the supply chain that would help me keep my hair after four months of treatments. Keep track of appointments, test results and paperwork. Weigh the ROI of support groups, surgical options and, most importantly, revealing myself as a patient of breast cancer.

This required research, leadership, creativity, a team and support systems. As an editor, I’ve enlisted all these qualities while tackling editorial projects  for the newspaper, and later, the business news website that lured me away in 2015.

There’s plenty written to help women facing other workplace disruptions — pregnancy, motherhood and caregiving.

But what about working with cancer? I wasn’t finding much in terms of practical advice, stories from other women in similar situations, and tips to deal with it.

I decided on a plan that would allow me to work as much as I could. I would try to keep my hair through chemo. I would find ways to keep up my fitness level through my treatment.

And I would listen to others going through similar journeys (the last time I’ll use this word) to help others decide how they would proceed.

I was going to play the cancer card my way.

 

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