4.13.2019

The Layers of Palliative Care

By treating the patient as a whole, we ensure the common gaps in care do not get overlooked and the burden of cancer is reduced.


I was on the phone with a colon cancer patient who was looking for help and guidance. She had grown frustrated with her oncology team, and gradually explained the long list of complaints and opportunities where they had let her down. After validating many of her concerns, I told her, "It sounds to me like you are looking for palliative care, and they just aren't offering it."

In my world, palliative care is a term thrown around as frequently as my rounds of treatment, but it was the first time she had heard the word. As I began to explain it, I could hear her disappointment turn to hope over the phone. There was a word to describe the patient experience she wanted but wasn't getting.

Not everyone knows what palliative care is, and most don't know how to put it into practice as advocates in their own care. It is the relative new kid on the health care block, and many medical teams are not trained to care for the patients with this approach. So, what is this magical thing called palliative care, and how can we incorporate it into our own health care plan?

As I see it, palliative care is tending to whole patient and not just their disease. For me, my care plan involves layers, that when woven together, reduce the stress I feel as a patient. And the less stress I feel, the better I'm going to fight my disease and improve the quality of my life.

Here's what my palliative care plan looks like:

The internal layer is about fighting my cancer. It's about infusions, scans, clinical trials and working to keep my disease stable. For others, it could include radiation and surgical treatment. It may even involve second opinions, and a multidisciplinary approach to beating back disease.

The next layer is about managing side effects. I meet with my pharmacist at almost every infusion to talk about nausea, blood counts and what we can to manage my day-to-day quality of life through medication. At times, this layer has included meeting with a dermatologist and podiatrist to discuss treatment-related skin and foot issues, and an acupuncturist to help treat neuropathy.

The next layer involves care that doesn't immediately impact my ability to physically fight the disease, but my ability to live my life to the highest quality despite the disease. That includes seeing a physical therapist to manage the lymphedema I developed in my left leg several years after my primary surgery. For others, it could be meeting with a mental health professional to help process the emotional repercussions of diagnosis, a dietician to help manage treatment-related nutritional needs, or a social worker that will help navigate services available for patients through the health care system or community organizations.

The outside layer extends beyond me to include my family, and the community and online support programs available to us. For me, it includes local organizations that offer family support programs such as camps for my kids and art therapy nights. Online support communities help me know I'm not alone in my fight and offer the peer-to-peer mentorship that is unique to my cancer and specific treatment plan. Support programs could include free or reduce cost service to patients that fall outside of the medical realm yet fill gaps in care and help reduce the burden of cancer on an individual and a family.

It is important for a cancer care team to know about the various layers of care they can bring to a patient fighting a chronic or terminal disease, and begin to look at treating them as a whole. It's also important for a patient to advocate for themselves, and understand what services are available to them within reach of their community. As we work from the outside layers in, we're going to create an environment that enables patients to give everything they have to fighting and managing their disease, and ultimately produces better outcomes.

This article was originally written for CURE MagazineYou can find this article and others I have written on their website

1.30.2019

Parenting, Interrupted: Three Tips on Being a Parent With Cancer

As a parent facing cancer, we just want to know that our children will emerge on the other side of our diagnosis and be alright.


I cross paths with many parents newly diagnosed with colorectal cancer. In the midst of trying to wrap their heads around a cancer diagnosis, they are also trying to integrate this most unwelcome guest into their homes.

It is completely unfair and not right that you find yourself facing a cancer diagnosis when you have nothing but hopes and dreams for the way parenting and childhood is supposed to be. You have done everything you can to protect them from the pretend monsters under the bed and the real monsters lurking in the world. Yet, here at your doorstep is the most real and feared monster of them all, and you have no choice but to let it in.

How is cancer supposed to fit into this Instagram-perfect life you've created for your family? Too many times I've looked down at my kids coloring on the floor of my infusion room and wanted to scream, "IT'S NOT SUPPOSED TO BE THIS WAY!" It's not supposed to be this way for my friend who was diagnosed while still pregnant, or my friend who lost her husband while their baby was still in diapers, or my friend who has a special needs son who will depend on her for the rest of his life. Despite the way it supposed to be, but we have no choice but to parent through cancer.

For parents facing a cancer diagnosis, I offer three bits of advice:

1. Grieve

Grieve the loss of parenting as you expected it would be. Grieve the loss of moments, time, milestones and innocence.

While sitting in a hospital bed recovering from my initial cancer surgery, I had to watch cellphone video of my baby taking his first steps. I'd left that nursing baby at home, not realizing that he would start to walk, and the stress of surgery, drugs and additional weight loss from a liquid diet would dry up my milk and force me to wean him.

In its first week, cancer had stolen significant parenting milestones from me. Little did I know it was foreshadowing of the years to come, when school performances, field trips and holidays would be trumped by infusion appointments and side effects that left me unable to parent like I wanted.

2. Control

Let go of control. Let go of the hard-and-fast rules with which you parent. Let go of the state of your house, that pile of laundry or even making your bed. You can try to hang on, or you can save your energy for fighting this disease.

I laughed as I piled the groceries on the belt in the checkout line. There were enough pre-packaged ready-to-eat meals to last a week. I would have silently shamed this version of precancerous me had I seen her a few years before, when I was busy making homemade organic baby food and nursing my babies on demand.

Precancerous me had the energy to passionately care about what my kids ate, what they wore and the amount of time they spent in front of the television. Cancerous me just wanted to crawl in bed and make the next few days as effortless as possible, and spare what little energy I had for making sure my kids were fed, happy and had their mom.

3. Empower

Giving your kids control in an out-of-control situation will empower them and make them feel like they are part of the solution.

My 4-year-old couldn't drive me to appointments, or take notes while my oncologist rattled off the names of drugs I still don't know how to spell. But he knew where I stashed all my nausea meds, and which puke bowl to grab me when I needed it. He has always had an age-appropriate role in my care and has done his part to make me feel as well as he could.

By making your kids feel like they are part of the process, you are making them feel like they are part of the solution. My preschooler wasn't able to fix my disease, but he was able to support my fight against it.

As instinctive as it may be for parents to want to help their kids before they help themselves, we have to listen to the flight attendant and put the oxygen mask on us before we put it on them. We have to make sure we're breathing through this, so we can show them that they can keep breathing through this, too.

Regardless of the outcome of the diagnosis, we must remember that children are resilient. They won't remember what we missed, but they will always remember when we were there.




This article was originally written for CURE Magazine. You can find this article and others I have written on their website