Managing the Costs of Hodgkin’s Lymphoma Treatment

Medical billing 101

Let’s start with the medical bills. I’m lucky to have health insurance. My deductible is manageable and my out-of-pocket maximum — though hard on my budget — didn’t break the bank.

If you don’t have health insurance, you may want to explore your options as soon as possible. You may be eligible for a discounted health plan or Medicaid.

Every month, my insurer sends me an Estimate of Benefits (EOB). This document explains what discounts or payments your insurance will provide to the entities billing you and what costs you should expect to be responsible for in the following weeks.

You can sometimes be billed days, weeks, or even months after a visit to a medical professional. Some of my providers managed billing online and others sent bills by mail.

Here are a few things I learned along the way:

One visit, many providers

Even for a single medical visit, you might be billed by a lot of different healthcare providers. When I had my first surgery, I was billed by the facility, the surgeon, the anesthesiologist, the lab that performed the biopsy, and the people who read the results. It’s important to know who you see, when, and for what. This will help with spotting errors in your EOBs or on bills.

Discounts and payment plans

Ask for discounts! All but one of my medical providers gave me discounts when I paid my bills in full. This sometimes meant floating things on my credit card for a few weeks, but it paid off in the long run.

It’s also worth asking if you can use a health payment plan. I was able to transfer my largest balance to a third-party for a zero percent interest loan with manageable minimum payments.

Allies are everywhere

Think creatively about who your potential allies may be when it comes to managing costs. You may soon find help in unexpected places, for example:

• I was able to connect with a benefits coordinator through my employer that helped me identify the resources available to me.
• I had a nurse assigned to me through my insurance who answered questions about my coverage and EOBs. She even acted as a sounding board when I didn’t know where to turn for advice.
• One of my colleagues had worked in the medical field for decades. She helped me understand the system and navigate tough conversations.

From personal experience, I’ve realized that keeping up with medical bills can feel like a part-time job. It’s natural to get frustrated. It’s common to have to ask to speak to supervisors.

You need to make your billing plans work for you. Don’t give up! This shouldn’t be the biggest hurdle in your battle against cancer.

More medical expenses

The medical expenses that accompany a cancer diagnosis go beyond bills for appointments and healthcare providers. Costs for prescriptions, therapy, and more can add up quickly. Here’s some information about managing them:

Prescriptions and supplements

I’ve learned that medication prices vary dramatically. It’s OK to talk to your doctor about costs. All of my prescriptions have a generic option. That means I’ve been able to get them for cheaper prices at Walmart.

Other ways to cut costs include:

• Checking out local non-profits. For example, a local non-profit called Hope Cancer Resources partners with my oncologist’s office to provide assistance with purchasing prescriptions related to treatment.
• Searching online can help you find discounts or rebates. If you decide to take supplements, do a quick price comparison: It might be cheaper to pick them up online.

Fertility preservation

I wasn’t expecting to learn that loss of fertility can be a side effect of treatment. Taking action to preserve fertility can be expensive, especially for women. I chose to avoid this expense, as it may have delayed the start of my treatment.

If you’re interested in fertility preservation, ask your insurer about your coverage. You can also check in with your benefits coordinator to see if you can receive assistance from any programs offered by your employer.

Therapy and tools to stay calm

Living with cancer can be stressful. At times I’ve felt like I’m in the biggest fight of my life. That’s why it’s so important to feel supported and learn healthy ways to cope.

But even with insurance coverage, therapy is often expensive. I chose to make this investment knowing that my maximum out-of-pocket for my health insurance would soon be met. This meant I could go to therapy for free for most of the year.

If you don’t want to spend cash on therapy, check with your employer, local treatment facilities, and local non-profits to see if you can receive assistance. Another option is to attend support groups or be paired with a survivor who can offer advice.

And there are other ways to relieve stress. Much to my surprise, my chemotherapy nurses encouraged me to get massages! There are organizations that provide massages specifically for cancer patients, such as Angie’s Spa.

Dealing with hair loss

Many cancer treatments cause hair loss — and wigs can be one of the more expensive aspects of living with cancer. Nice, human hair wigs cost hundreds or thousands of dollars. Synthetic wigs are much more affordable but often require work to make them look like natural hair.

If you do pick up a wig, check out YouTube or ask your hair stylist for tips on how to make the wig less noticeable. A cut, some dry shampoo, and concealer may make a big difference.

When it comes to paying for your wig, ask your insurer if it’s covered. Be sure to use the term “cranial prosthesis” — that’s key!

If your insurer doesn’t cover a wig, try contacting wig retailers directly. Many will offer a discount or freebies with your purchase. There are also some incredible organizations that provide free wigs. I’ve received free wigs from:

• Verma Foundation
• Friends Are By Your Side
• American Cancer Society Wig Bank, which has local chapters

Another organization, called Good Wishes, provides free scarves or head wraps.

Here’s a picture of me wearing the cap wig I received from the Verma Foundation.

Day-to-day life

Beyond medical expenses, the costs of day-to-day life with cancer are significant. And if you need to take some time away from paid work to focus on treatment, keeping up with bills can get tough. Here’s what I’ve learned:

Finding new clothing

If you’re being treated for cancer, it can be helpful to have some new clothing to accommodate changes in your body. You may experience bloating as a side effect of treatment. Or, you may have a port implanted to allow easier access to a vein.

In either case, there are affordable ways to find new clothes, including hitting the clearance aisle or shopping second-hand. And remember that people will want to help you. Consider making a wish-list at your favorite clothing store and sharing it.

Healthy food and exercise

Maintaining a healthy diet and staying as active as possible are good ideas — but sometimes hard on a budget.

To make it easier, aim to be open to the help people in your life may offer. Two of my coworkers took ownership of setting up a meal train for me throughout my treatment. They used this helpful website to keep everyone organized.

I also recommend placing a cooler on your porch and adding ice packs when people are delivering food to you. This means your meals can be delivered without you and your family being disturbed.

I’ve also been given many gift cards for delivery. These come in handy when you’re in a pinch. Another practical way friends may pitch in is by creating gift baskets of your favorite snacks, treats, and beverages.

When it comes to physical activity, consider contacting your local American Cancer Society office. Mine offers seasonal nutrition and fitness programs for free. You can also look into your local community center, nearby gyms, and fitness studios to see when you can participate in free classes or if they offer trials for new clients.

Housekeeping

Between living your normal life and fighting cancer, it’s natural to feel exhausted — and cleaning may be the last thing you feel like doing. Cleaning services are pricey, but there are other options.

I chose to apply for assistance through Cleaning for a Reason. This organization pairs you with a cleaning service in your area who will clean your home for free for a limited number of times.

A friend of mine — who was diagnosed with cancer the same week I was — used a different approach. He made a list of chores he needed help with and let friends sign up for individual tasks. A whole team of people could conquer the list in a fraction of the time it would have taken for him to tackle it alone.

Normal monthly bills and transportation

If you’re having trouble with your usual monthly bills or with the cost of transportation to appointments, it may be helpful to check out local non-profit organizations. For example, in my area, Hope Cancer Resources may provide some people with financial assistance for prescriptions, rent, utilities, car payments, gas, and travel expenses for out-of-town treatment. They also provide transportation for appointments within a 60-mile radius.

The non-profit resources available to you will depend on your area. But no matter where you live, the people in your life may want to offer their support. If coworkers, friends, or loved ones want to organize a fundraiser for you — let them!

When I was initially approached, I felt uncomfortable with the idea. However, through these fundraisers, I was able to pay thousands of dollars toward my medical bills.

One common way for friends to fundraise for you is through services like GoFundMe, which allows your connections to tap into their social networks. GoFundMe has a help center with a ton of tips on how to make the most of your fundraiser.

People in my life also found unique ways to raise money to help me. My team at work started a “pass the hat” idea by leaving a coffee cup on my desk, since I wouldn’t be back in the office for weeks. Folks could drop by and contribute cash as they were able.

Another sweet idea came from a dear friend who is a Scentsy consultant. She split her commission from an entire month of sales with me! During the month she chose, she hosted both an online and in-person party in my honor. My friends and family loved participating.

Free things that really help

I’ve spent hours Googling assistance available to people facing cancer. Along the way, I’ve learned about free items and giveaways — and some of these are immensely helpful:

Port pillow

If you have a port for the duration of your treatment, you may notice it’s uncomfortable to wear a seatbelt. The organization Hope and Hugs provides free pillows that attach to your seatbelt! This is a small thing that has made a big difference in my life.

Tote for chemo

My sweet aunt, who beat breast cancer, knew I would need a bag packed full of items to take to chemotherapy that make treatment easier. So, she gifted me a personal tote. However, you can get a free tote from The Lydia Project.

Vacations

One of the most surprising things I found was that cancer patients, and sometimes caregivers, can go on a (mostly) free vacation. There are several non-profits who understand how important a break from your battle against cancer can be for your health. Here are a few:

• First Descents
• Camp Dream
• Take a Break from Cancer

The takeaway

For me, it’s sometimes been overwhelming to think about managing the costs of cancer. If you’re feeling that way, please know that it’s totally reasonable. You’re in a situation you didn’t ask to be in and now you’re suddenly expected to cover the costs.

Take a deep breath, and remember that there are people who want to help. It’s okay to tell people what you need. Remind yourself that you’re going to get through this, one moment at a time.

Destiny LaNeé Freeman is a designer living in Bentonville, AR. After being diagnosed with Hodgkin’s lymphoma, she started doing serious research on how to manage the disease and the costs that come with it. Destiny is a believer in making the world a better place and hopes others benefit from her experience. She is currently in treatment, with a strong support system of family and friends behind her. In her spare time, Destiny enjoys lyra and aerial yoga. You can follow her at @destiny_lanee on Instagram.