Everyone has a cancer story. If you or someone in your immediate family hasn’t had cancer, chances are you know someone who has.
More and more people are being diagnosed each year. The Centers for Disease Control and Prevention (CDC) estimates that new cancer cases will increase by more than 20 percent from 2010 to 2020. As Olympic gold medal winner and cancer survivor Shannon Miller says, “Cancer doesn’t care who you are.”
When everything changes
As we sat together at the American Cancer Society Hope Lodge in New York City, it was obvious that she is right: Among us were an Olympian, a special education coordinator, a municipal manager, a special needs adult caregiver, an independent business owner, a firefighter and a TriplePundit writer. And we were a group of cancer warriors (a word many cancer patients like better than “survivor”). Each of our diagnoses was different, but one aspect of our stories was exactly the same. One day, it’s life as usual. Then a doctor says, “it’s cancer,” and everything changes.
Everyone in the room said the same thing. So many things go through your mind as doctors clinically lay out your options. You are not only a cancer patient, but you also need to research doctors and insurance policies, deal with family and work, and try to understand treatment options, among other things. In the midst of getting shocking news, you have to make serious decisions. Quickly.
Most of us want to trust that our doctor knows everything and will propose the best treatment. That we will survive. But what if you live in a small town with a hospital that isn’t equipped to deal with your illness? What if your doctors think there isn’t anything to be done? What if the treatment they recommend seriously cripples your quality of life, if you even survive it? What if you had to travel far away from home to get the treatment that you needed?
Where to find help
Founded in 1913, the American Cancer Society (ACS) operates 38 Hope Lodges around the U.S. for patients who need to travel for treatment. At Hope Lodge, patients stay free and can get transportation between the lodge and the treatment center. But unfortunately, 38 locations aren’t nearly enough to help the growing number of cancer patients.
When Extended Stay America employees overwhelmingly voted that they wanted the company to throw its philanthropic muscle behind helping cancer patients, company executives weren’t sure how they could help. But ACS knew exactly how: donated hotel rooms for cancer patients.
And Hotel Keys of Hope was born.
Extended Stay America operates 630 locations across the U.S. and Canada (more than 69,000 rooms). In its first year, the company donated more than 50,000 hotel stays (both free and deeply discounted) that helped more than 6,700 cancer patients and their families afford to travel to get the treatment they needed.
“Transportation and lodging costs are a huge issue for patients,” said Shari Henning, executive vice president of the American Cancer Society. “Extended Stay America became a secondary Hope Lodge for saving people’s lives. When Hope Lodge was full, ESA allowed us to continue to say yes to people that contacted us.”
By July 2017, Hotel Keys of Hope will have contributed 150,000 rooms (equal to $5 million in lodging cost savings) to more than 15,000 cancer patients since the start of the program.
I hadn’t heard of Hotel Keys for Hope, and neither had any of the 40+ women in my young cancer survivors support group. But ACS is a familiar resource, especially when it comes to help with lodging. A few years ago, my friend Grace had to go to Chicago for treatment on the same weekend as the Chicago Marathon — when the majority of hotel rooms are booked months in advance. And although there were no rooms available at Hope Lodge, ACS got her a room at the Sheraton right downtown near her appointment.
“The American Cancer Society worked so hard to find me a room. I couldn’t believe that they found one in the middle of all that was going on — for a discounted rate. ACS gets things done right away. They also think of things like special cleaning for cancer patients [fewer germs]. And after all that, the Sheraton donated swag bags [to be handed out to new cancer patients],” she said.
A home away when patients need it most
For these cancer warriors gathered around the room in New York, Hotel Keys of Hope played a big part in their treatment journey.
Nikki** was diagnosed with breast cancer at 18. In the more than 10 years since, she had several recurrences (when the cancer comes back). The most recent recurrence in 2012 showed that the cancer had metastasized to her brain (stage four). In 2015, it reached her liver and left lung. Her Philadelphia doctor told her there was nothing to be done, and that she should go home, contact hospice and prepare to die.
But the young mother of two small children, foster mother to a now-thriving teenage daughter, EMT and first woman (and woman of color) to be accepted into the Hamilton, New Jersey Fire Department was not ready to give up.
When she got another medical opinion, she found out that the treatment she needed was available in New York City at Sloan Kettering Baskin Ridge. It was much too far to commute daily. Sloan Kettering knew about ACS and Hope Lodge and sent Nikki their way. Through Extended Stay America, Nikki and Jon-Arthur were able to stay from December 2015 to February 2016. When we met in the summer of 2016, she was still working, taking care of her kids and living life.
“Without Hotel Keys of Hope, we couldn’t have gotten it done. It really took the stress off of us,” Nikki said. A special perk of ESA? It is pet-friendly. Nikki was able to bring her dog, who was a real comfort when she was recovering from treatment.
When Greg was diagnosed with stage three bladder cancer in 2013, the “gold standard” course of treatment that his doctor in Pennsylvania recommended involved removing his bladder and wearing an apparatus for the rest of his life, impacting his quality of life and mobility. So, he had to make a decision about whether to accept his doctor’s recommendation or find another way, all the while having an aggressive cancer that was continuing to grow.
“You only have one chance to pick the right [course of action], and you are running out of time,” Greg said.
So, he did some research and found that the two most renowned programs for his type of cancer were in Texas and at Massachusetts General in Boston. Texas was too far, but Boston was only eight hours from his home. Mass General sent Greg to ACS and ESA for help with lodging. He is now two years out from treatment, with no apparatus in sight.
“Hotel rooms in Boston were around $300 a night,” he said. He and his wife, Jalee, couldn’t see how they could afford a long-term stay. Hotel Keys of Hope rates begin at 25 percent off the regular room rate (which as of this writing averaged $150/night in the Boston area). The program also offers rooms for $19 a night or completely free.
Bonnie was diagnosed with stage three Hodgkins lymphoma. She lived in upstate New York, but needed a complicated treatment regimen involving chemo and a stem cell transplant, so she was referred to Sloan Kettering. Hope Lodge was booked for more than a month, but her treatment could not be delayed, so she moved into ESA in 2014. Now she is planning her wedding to Jermaine.
Tosha had Hodgkin’s Lymphoma at 17 and was diagnosed with breast cancer in 2014. Due to her cancer history, she was referred to Mass General in Boston for a specific type of radiation treatment, but that meant she needed to travel from her Connecticut home. She also found out about ACS and ESA through Mass General.
“You are researching so many things, and there are so many cancer organizations out there. When a recommendation comes from your doctor’s office, it means more,” Tosha said.
Seeing the effects up close
ESA employees overwhelmingly voted for the company to get involved in the cancer fight, and they are in a position to see the people they are helping up close. Nikki and Jon-Arthur, for example, developed a great relationship with the manager of their hotel during their lengthy stay.
Gary is an Extended Stay America manager in Portland, Maine. He wanted to join ESA largely because of the Hotel Keys program. He had a brother that was diagnosed with cancer at age 13 (who later passed away).
“My whole interview was about the program,” Gary recalled. “I really wanted to be involved.”
And as a manager, he is. Gary talked about how it felt to become close to patients who stayed for weeks. He grew to know their treatment schedule and tried to anticipate needs they might have after seeing other long-term cancer patients go through it. And, sometimes, he would get a call from a patient’s family that they would not be returning because their treatment did not work and they passed away. Those days are tough, he said.
Since ACS has relationships with other hotels, why is this partnership with ESA so important?
Because ESA has features that regular hotels don’t. The suites are large, so when patients are feeling terrible after treatment, they can rest in the bedroom with the door closed and their family can stay in the living room. The kitchen with a full-sized refrigerator and dishes is useful because many cancer patients have specific foods they can or can’t eat. Eating out every meal for weeks won’t work. One woman in the group brought her own blender to make smoothies because they were the only thing she wanted to eat. And remember Nikki’s dog? Extended Stay America is a cross between a hotel and an apartment that works out very well for patients undergoing treatment.
Help by spreading the word
When I told my group about the Hotel Keys program, one organizer said that every social worker in every cancer treatment center should know about it, so more people can take advantage of better treatment options even if they are a long way from home.
Another friend, Jori, has stage four breast cancer. So, she has traveled frequently to other cancer centers far from home for appointments, tests and treatment, but she never knew about Hotel Keys for Hope or received any travel assistance. When I told her about the program, she said she could see the benefits but only if people know about it.
“I feel like we are at the mercy of a good social worker to inform us and stay involved. When you need to get a second opinion, it is pretty urgent usually,” she said. “Also, it seems like a lot of programs have forms to fill out and doctor’s signatures, so the mental capacity to do that [in the midst of crisis] isn’t always there. I think ways to spread the word would probably be most effective by social media and through cancer centers.”
Last month was my second October (breast cancer awareness month) since I completed treatment. I am reminded of my weeks and months of treatment more during this time of year and sad to see our group grow larger as more women get new diagnoses. I know that people want to help, so instead of buying something pink, spread the word about Hotel Keys for Hope. It helps patients with any cancer diagnosis. Tell the person with cancer in your life, that family friend, or friend of a friend. It could encourage them to look further for treatment, and that could make all the difference.
If you stay at Extended Stay America, drop your key in the donation box. For every key dropped in the box, ESA will donate $1 of hotel room value (up to $1 million dollars) so that even more cancer patients can benefit.
To request an ESA Hope Lodge room, cancer patients or their caregivers should call the American Cancer Society at 1-800-ACS-2345.
Unless otherwise specified, images are credited to Andrea Newell.
**Participants in the group readily shared their experiences, but one member requested that 3p not use last names, so cancer patients are only referred to by first names.
Author note: Extended Stay America paid for my trip to New York, but my opinions and experiences are my own.