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“Creating your own palliative care team” by Lori Burwell, A #MetsMonday featured post

It’s with pleasure I share the next #MetsMonday featured post, “Creating Your Own Palliative Care Team,” by online friend, Lori Burwell.

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.

To get more articles like this one delivered weekly to your inbox, Click Here! #KeepingItReal #SupportYouCanUse

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.

Creating Your Own #PalliativeCare Team by Lori Burwell - A #MetsMonday Featured Post #MBC #breastcancer #metastaticbreastcancer #advocacy

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Alene

Wednesday 13th of October 2021

Nancy, thanks for sharing this post again. I’m very sorry to hear of Lori’s passing. This is such important information, a strong palliative care team makes all the difference for the individual and their family. Until we have a truly patient focused and coordinated health care system that recognizes the whole human being and their loved ones, Lori was right that it may be necessary to do more footwork or driving to complete a team, hopefully if COVID taught us anything it is that we can do much of this remotely.

Nancy

Thursday 14th of October 2021

Alene, It's too bad so much of the footwork has to often be done by patients themselves. A strong palliative care team is so important and not just at end of life. And yet, it can be difficult to have one due to where you live and other factors. Doing things remotely works for some, but not for others. I was so sad to learn that Lori died. She was such a kind person. I only knew her via Twitter, but I am going to miss her. Thank you for commenting. It's good to hear from you.

Linda

Wednesday 7th of April 2021

Thank you, Lori! I moved from California to Iowa in 2020 (yes, during the pandemic) and had to get all new doctors. I like all of them! But especially the new primary care internist who I saw last and told me that I had a good 'team' that she would be happy to work with. Phew. Since I got her name and my cardiologist's name from my oncologist, I have to say that it was the oncologist who steered me toward my team. And I had a great therapist that I continue to see through Zoom. It really helps to like the people who help you.

Ilene

Monday 5th of April 2021

Lori as always smart, innovative, tenacious and of course a great example of patient self advocacy. Thank you for sharing and if you’d not mind I’m going to RE blog this on my site. It’s important since I advocate for palliative care but not everyone has access to a great palliative oncologist like I do so it’s just not as easy as asking for one.❤️

mamamorgaine

Monday 5th of April 2021

Thank you for a road map to DIY your own care team! Even though my oncologist is part of a larger system that does offer some of what you described, getting to where the care is located is difficult in rural Vermont.

I do have a question regarding a therapist...are there any questions that you'd ask a potential therapist regarding cancer? Since my long-term therapist had a brain aneurysm and lost almost all her executive functioning, I've been without therapeutic support throughout my cancer treatment. I'd love to hear any tips to finding someone who can talk about my diagnosis without making EVERYTHING I'm experiencing about my diagnosis.

Again, many thanks for your post!

Lori Burwell

Monday 5th of April 2021

Thank you for reading the post. I’m sorry you lost your trusted therapist, especially in that manner. I think it’s important to ask a potential therapist if they have worked with patients with cancer or any terminal/life threatening disease. And you are correct-everything that happens is not about the diagnosis. That would be another question I would ask - if the potential therapist can sort out what seems to be about the illness and what is about living your life. Experience with death and dying is important. One of my earlier therapists was a grief counselor. She was always on point with me (she retired.) I hope that helps.

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