Living Well with Serious Illness: A Young Mother’s Colon Cancer Story

 

When Sarah, a mother of two young boys, was diagnosed with metastatic colon cancer at age 34, she was shocked and overwhelmed, but also determined to find the best care possible. She fought for a cancer doctor who would support her at every turn, and found specialists to address the many consequences of treatment she experienced. She enlisted her own pharmacist to help her understand and adjust the numerous medicines to minimize side effects. She found a pain specialist and physical therapist to help with difficult symptoms and side effects of treatment, and other doctors to round out her care team. She was willing to do anything to remain active and be able to care for her sons. 

“I think any serious illness is going to make a patient assess their life, their values, and their purpose,” says Sarah. “Patients deserve the highest level of care available and I wasn’t going to settle. Not for me and not for my children.”  

One day, she was telling a friend about the hand-selected care team she assembled to give her an extra layer of support through the cancer journey.  

“That sounds a lot like palliative care,” the friend said.  This is Sarah’s story. 

Sarah knew about palliative care, but hadn’t realized it was an actual medical specialty. At her friend’s urging, she scheduled a meeting with the palliative care team at the cancer center where she was being treated. By this time, she had been dealing with pain from the cancer and from the long and intense treatment cycles. She also had a chronic cough that developed when the cancer spread to her lungs. 

“Right away, the palliative care team found gaps in my care. I thought I had this amazing care plan and all my needs were being met, but it turns out there was a lot missing that I didn’t even realize,” remembers Sarah about her first meeting with the palliative care team.

Palliative care is specialized medical care for people living with a serious illness. This type of care focuses on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a specially trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment. 

The palliative care team immediately went to work to help tackle Sarah’s issues. In addition to managing her pain, Sarah meets with the team’s pharmacist after every round of treatment to find ways to adjust the medicines to manage her blood counts, minimize nausea and improve her day-to-day quality of life. The team also connected her with a dermatologist and podiatrist to discuss treatment-related skin and foot issues; and referred her to an acupuncturist for nerve pain, a common side effect of chemotherapy. They also provide her and her children with emotional and spiritual support to deal with the ups and downs of the cancer.

“What’s beautiful about my palliative care team is that they see the bigger picture. They are like the conductors of the orchestra. They make sure all of my other doctors and specialists are in sync and they are constantly looking for gaps to fill,” describes Sarah.

Seven years after diagnosis, Sarah has had more than 150 treatment cycles. With the palliative care team, she knows she can better manage the treatment rollercoaster. She works full time and is able to spend quality time with her children. Sarah also advocates for palliative care for others living with cancer in her role as a writer and public speaker. 

Sarah hopes her story will inspire people to seek out palliative care as soon as they are diagnosed with a serious illness and to take advantage of these services immediately.

“Every patient deserves to be treated as a whole person, not just as the disease they happen to have.  It’s also important for a patient to advocate for themselves, and understand what services are available to them within their community,” she says.

To find out how you or a loved one dealing with a serious illness can benefit from palliative care, visit GetPalliativeCare.org. 

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