The “C” Word
It’s just a word, right? A six-letter word. A word that weighs heavily on the hearts, minds and souls of more than 11 million Americans, according to the most recent statistics available from the American Cancer Society.
There are myriad reactions to the “c” word. People with cancer are just that — people — who have cancer. They each respond uniquely in their need for information, treatments and support.
When you’re met with a cancer diagnosis, you want guidance; guidance in care, costs, coping, control and ultimately conquering the disease. As the button says, “Cancer is a word, not a sentence.”
The types of cancer that affect people are numerous. Depending on the cancer and stage, the options available are a maze, with no clear path. Following is a short list of hospitals, and the experiences of patients, to help you research your options:
- OHSU Knight Cancer Institute
Jenene from Portland was diagnosed at OHSU with acute lymphocytic leukemia. After a few rounds of chemotherapy, she received a stem cell transplant from her sister—an expensive procedure, especially without adequate insurance. Jenene says, “OHSU has a great social worker who helped get me on the Oregon Health Plan.”
- Kaiser Permanente
Lisa from Hillsboro was diagnosed with an early-stage cancer curable with surgery. Of her experience with Kaiser she says, “They took control of the situation and made the necessary appointments to get the treatment I needed. They even had a therapist call me to see if I would like an appointment, or needed additional resources. Kaiser was, and has been, great.”
- Doernbecher Children’s Hospital
Dave from Salem spent a great deal of time at Doernbecher with his wife and kids while one son, then 5 years old, was being treated for cancer. Dave remembers that there was always something going on for the kids. “They had special volunteers who helped with anything from baking cookies to just sitting with the kids to give the parents a break. I specifically remember a massage therapist going room to room to help the parents. That was awesome!” He remembers telling his son that “the doctors were going to take great care of him. And they all did.” Six years later, his son is a healthy, happy and active little boy.
Cancer is expensive. According to the National Cancer Institute, the cost of treating all types of cancer in the United States in 2010 totaled over $124 billion. That number is projected to increase to between $158 and $200+ billion by 2020.
However, treatment costs are not the only costs associated with cancer. Lost work time for patients and family members, traveling expenses for specialized care, prosthetics not covered by insurance, and even the cost of eating out more frequently to accommodate appointments and treatments all add up. The financial toll can deplete a family’s safety net and wipe out retirement and college accounts.
While the high cost of cancer is far more than just financial, the dollar hit to families can be devastating for years to come. Here are some resources to assist cancer patients and their families in finding some financial peace:
- Weekly co-pays can start to add up quickly when appointments occur several times per week. Even those with a good insurance plan can have a tough time meeting their co-pay obligations. Organizations like the Cancer Care Co-Payment Assistance Foundation and the Leukemia and Lymphoma Society offer an array of co-payment assistance programs to those in need.
- Northwest Cancer Specialists offers financial counseling for patients. They also handle insurance inquiries and claims processing, as well as helping to identify financial assistance programs for patients to cover the costs of care beyond what insurance provides.
- Cancerforcollege.org is one of many organizations giving scholarships to young cancer survivors. Siblings can apply for tuition assistance through the SuperSibs! site, and students who have lost a parent to cancer can find help through Inheritance of Hope.
- The Children’s Cancer Association’s LifeSupport is a bi-lingual resource aiding families in meeting their essential day-to-day needs.
- The Corporate Angel Network fills empty seats on corporate jets with cancer patients traveling to treatments. According to a press release earlier this year, they flew over 3,000 cancer patients in 2010, and over 36,000 patients since the nonprofit was founded in 1981.
Having cancer and getting through the everyday-ness of life can sap your energy and spirit. Depending on your individual prognosis, coping can mean seeking support from family and friends, and enlisting the physical, psychological and spiritual assistance of professionals and organized groups.
Coping has many stages and faces because people react differently to a cancer diagnosis. Faith, a young mother in Hillsboro, dealt with her emotions privately as opposed to seeking out support groups. Faith says she “didn’t want any support groups because I was so afraid of people knowing. I didn’t want the panic of people around me.” For people like Faith, close friends and one-on-one counseling helped, but for others, online communities and local support groups help them thrive. To survive and thrive, here are some organizations that help you with both:
- Stupidcancer.com is an online community of support for those age 15 to 40 who are affected by cancer as patients, or as children, parents, caregivers or spouses of someone with cancer.
- SuperSibs! recognizes that cancer affects the whole family and they provide comfort and community for siblings, or “shadow survivors.”
- Angels Making a Difference is a local nonprofit founded by two sisters. They serve the Portland area by connecting cancer patients with volunteers who can provide transportation, meals, bill-paying assistance, insurance claims, fundraising ideas and more. Applications for assistance are located on the site.
- Children’s Cancer Association is a Portland nonprofit giving support to families dealing with pediatric cancers. Their Chemo Pal® program provides a buddy to sit with kids during their chemo treatments, and The Caring Cabin™ is a beach retreat house for families in need of time away from hospitals.
- Doernbecher Children’s Hospital’s Bridges Program holistically manages pain and symptom relief for terminally ill children. Their program supports the child and family during a very difficult time. From arranging family portraits, locating hospice resources and assisting with spiritual and cultural needs, to counseling, bereavement and annual memorial services, the Bridges Program has been caring for terminally ill children and their families since 2005.
A cancer diagnosis can make you feel out of control. Facing the onslaught of tests and treatments, medical terminology, second opinions and insurance specifics is daunting. You need tools to help you manage treatments and the details of life that start to slip through the cracks when dealing with a health crisis. As Dave says, “A log book was a must!” Here are two tools on the market to assist you in creating some order out of the chaos:
- CUREganizer, created by Dan Gennari, a husband and father who was diagnosed with Hodgkin’s Lymphoma in 2009. CUREganizer is available as of September 1, 2011—the one-year anniversary of Dan’s stem cell transplant treatment. CUREganizer is a place to track and trap lab results, insurance information, and names of specialists, treatment plans and schedules. Additionally, there is a gift registry and more to corral all the details of life in the moment. It’s a personal planner with a purpose. You can read more about Dan and his journey on his blog at dangennari.com.
- The Cancer Trakker was created and developed by Amber Bowden. Ms. Bowden lost both her mother and husband to cancer, and she knows the importance of keeping information organized and accessible.
The Cancer Trakker, one of four different medical organizers available at medtrakker.com, allows patients to customize the cover and includes a yearly appointment calendar, blood count pages, places to track your overall medical history, weekly treatment schedules, insurance information, progress charts, information on nutrition and managing side effects, in addition to physical and motivational support information.
Surviving cancer is the goal and on the way to the goal you may face some temporary or permanent changes in your appearance and your body. “Losing my hair was the hardest,” according to Jenene, so she shaved her head and faced the world with her beautiful and brave bald head.However you may prefer to cover your head with a wig, wear a hat, or wrap it in a bold scarf.
As a mastectomy patient, you may opt out of breast reconstruction surgery, but there may be times you want a little help with prosthetics and clothing designed to flatter your miraculously resilient body and spirit. Resources abound on the web for all of this, but a few local businesses and nonprofits exist to give you a little extra comfort when you want it.
- Mary Catherine’s in Portland and Seattle offers a large selection of breast prostheses, lingerie and swimsuits for mastectomy patients.
- Pony Express Wigs and Boutiques in Clackamas has a large selection of wigs and hairpieces, hats, wraps and hypo-allergenic make-up for chemo patients.
- Good Wishes Scarves provides free It’s a Wrap© or Good Wishes scarves to anyone experiencing hair thinning or loss as a result of illness or treatment. To request a head wrap, send an email to email@example.com, or call 888.884.3653. They also accept donations of money, fabric and time. Volunteers are needed at fundraising events, and at their office in North Bend, Washington.
I’d like to add one final “c” word to the list; contribute!
There are many entities raising money to fund research they hope will lead to a cure for cancer; surely you can find one to give a little time, effort, love or money to? Or, as a cancer survivor, can you offer your support to others?
I asked Jenene to share the one thought she wakes up with each day, and she said, “That today I am going to become a little stronger.” Jenene, like Faith, did not want to talk about her cancer with any support groups. She says, “I wasn’t interested in hearing others’ stories. I was only interested in getting better. I finally reached a point were I was able to talk to others about the cancer and what they have gone through. Team in Training has been a huge support to me.”
Lisa gives back through her Miche Bag Hope program. She gives away Miche Bags with the Hope shell to women undergoing cancer treatment, or to charities raising money on behalf of a cancer patient. She also gathers a team and walks in Tuality Hospital’s annual C.A.T. Walk.
Faith has participated in the Relay for Life for several years to support friends who have lost someone to cancer, and she walks in the C.A.T. Walk as well.
Then there is Terri, an old school pal and breast cancer survivor. In 2009, I walked my first 60 miles in the Susan G. Komen 3-Day for the Cure in San Diego. Terri, along with other friends and family members, encouraged me. I walked again in Phoenix last November with my teammates Tammee and Ellen, just as Terri received her second breast cancer diagnosis. Terri says, “I have supported many friends and relatives over the years for their participation in the Susan G. Komen 3-day for the Cure, and three weeks after my surgery I decided it was my turn to walk.”
When you give time and energy, you get it back, as Terri can attest. She goes on to say, “I went to a meeting, signed up, emailed all my friends in my community and within 60 days I had over 25 friends join me.”
Let’s all get on our feet and take whatever steps we can toward a cure; the ultimate “c” word.
by Tammy Ellingson
Tammy is a freelance writer in Hillsboro who often walks for a cause. For more information on supporting a local walker in the Susan G. Komen 3-Day for Cure, visit her blog at mamacandance.blogspot.com.