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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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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