Update: Sadly, Lori died on October 7, 2021 from metastatic breast cancer. Another life stolen. Another family heartbroken.
Not everyone has access to specialty-type medical care such as palliative or supportive care. Even if you do, sometimes you still have to do a bit of legwork to get that access. Lori shares why and how she created her own palliative care team in her important piece below.
Thank you, Lori, for sharing your voice at Nancy’s Point.
Creating Your Own Palliative Care Team
by Lori Burwell
There is much to like about the corner of Virginia where I live: the beaches, temperate weather, good schools, reasonable real estate prices and lower taxes, to name a few.
Unfortunately, comprehensive, coordinated palliative, or supportive care, is not one of them. That is, unless you are military. Our region is home to many military bases, and approximately 30% of the population is affiliated with the military.
In order to accommodate this important group and their families, the military healthcare system is vast and comprehensive. The remainder of the population is served by one large healthcare system that currently does not have oncology services, leaving those of us requiring said services to use one of several private oncology practices.
The one I have used for the past 11 years is the largest in the area, has the best access to clinical trials and testing, and offers supportive care (or at least that what was advertised.)
I was diagnosed with early-stage breast cancer in 2010. I had a mastectomy, four rounds of the Red Devil plus Cytoxan, 10 weeks of Taxol, and a year of Herceptin. I chose to not have reconstruction as I couldn’t face one more doctor or any more hospital stays.
Little did I know that four years later, a routine chest x-ray would pick up multiple metastases in my lungs. More doctors and more hospital stays were definitely and very unfortunately, in my future.
So, back to supportive care.
What is that?
The more common name is palliative care, care that is focused on providing relief from the symptoms and stress of an illness.
(You might want to read, Sorting Out the Confusion Between Palliative Care & Hospice Care. They’re not the same thing.)
Thanks to those multiple lung metastases, I was going to need some palliative care.
I have come to find out that my oncology practice doesn’t actually offer palliative or supportive care. Heck, I can’t even get the triage nurse to call me back by the end of the day.
My oncologist has a huge patient load and problem solving my aching hands and feet, my chemo-induced migraines, and the ever increasing anxiety most metastatic patients feel is not something he can ever do for me. He is focused on keeping the cancer at bay.
So, I set out to assemble my own palliative care team.
First, I addressed the chemo induced peripheral neuropathy that actually developed during early-stage Taxol treatments. I was receiving Taxol again, and I knew the neuropathy would become worse. I had read about icing hands and feet during infusion, which I did faithfully. I also read that acupuncture could help.
1. With my doctor’s okay, I found an acupuncturist who had treated multiple people with neuropathy.
While I realize lying on a table with thin needles poking out of your body is not for everyone, I have found relief in her treatments and compassion in the way she deals with me. She has also helped me with migraines and seasonal allergy symptoms.
(You might want to read, What is chemo-induced peripheral neuropathy & how do you manage it?)
2. The next best thing I did for myself was to find a knowledgeable primary care physician (PCP).
This took multiple tries and three different doctors. I finally settled into a concierge practice. This is a more expensive option than your typical primary care doctor, but having her available when I need her is worth the extra monthly fee.
My PCP has referred me for help with migraines, works with my oncologist regarding blood work and drug interactions, manages my anxiety medications, and even tried to help me find a therapist.
3. Speaking of therapists, a therapist is a key member of my assembled palliative care team.
My PCP referred me to one, and we didn’t really mesh. I found another on my own, but she retired. My oncology practice came through here.
The research nurse who managed a clinical trial I was on saw how stressed I was and suggested the social worker who had just left the oncology practice to go into private practice.
Boom. Perfect solution.
Finally, I had someone who knew how to talk to a person with a terminal cancer diagnosis and someone who knew the players at my practice. She has held me accountable and is an excellent listener. I look forward to our conversations, albeit virtually these days.
4. Finally, I found a support network.
There are no support groups for metastatic cancer of any kind at my oncology practice. My noncancer friends are as supportive as they can be, but they are thankfully not in my shoes.
I needed people who spoke my language, who understood my feelings, who felt my pain.
In 2017, at the advice of my very savvy daughter, I sought out a community on Twitter. It has been a life saver. Side effects, new treatments, clinical trials, education, ideas, problem solving, friendships—it’s all there.
Twitter might not be your social media platform of choice; each platform has its good and productive parts. I believe I definitely found the good part of Twitter.
I’ve been using my self-assembled supportive care team continuously over the past five years.
I am in a pretty good spot right now, but there have been times when I’ve had no support. If I lived close to a major cancer center, I would have had continual care and therapy. Within the same institution, my palliative care team would have talked to each other and coordinated care and therapies with the oncology team.
Here in suburban southern Virginia, I drive all over the place for care. Records are not shared nor coordinated. I am the conduit.
I’ve decided this is okay.
After all, no one knows my current situation better than I do.
I hope by sharing how I assembled my own palliative care team, I can help someone else assemble one, should there be a need.
Regardless of cancer type or stage, do you have access to palliative or supportive care?
Are you receiving palliative/supportive care and if so, in what way(s) do you find it beneficial?
Do you have a comment or question for Lori?
Lori’s BIO: I am a former CPA, a retired high school math teacher, a wife, mother, grandmother, tennis player, gym rat, gardener, member of the 2020 LBBC Hear My Voice advocate class and friend both in real life and virtually. I was diagnosed with early stage Her2+ disease in 2010 and metastatic disease in the lungs in 2015. For over 5 years I have been on 6 different treatments, including three clinical trials. Follow Lori on Twitter here.