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From Provider to Patient Judith’s Myeloma Story Part II

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Published on April 16, 2020

Key Takeaways

“Whether you're a ‘go big or go home’ kind of person, or you're somebody who shows their feelings on their sleeve, it's important that you just be yourself,” says Judith C., who was diagnosed with multiple myeloma at age 58. Her experience as a physical therapist specializing in pain management gave her a unique perspective when she became a patient herself.

Watch now as Judith talks about the importance of finding a compassionate provider—one who listens and is interested in what you think and feel. She also discusses the importance of trusting your intuition and your own truth when facing the challenging decisions that accompany a cancer diagnosis.  

This is Part II of a three-part series. Watch the first video in the series at Thriving With Multiple Myeloma: Judith’s Story, Part I.

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Transcript | From Provider to Patient Judith’s Myeloma Story Part II

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Judith C.:

Hello. My name is Judith C. At age 58, I was diagnosed with multiple myeloma, an incurable blood cancer. I wasn't ready to have a stem cell transplant right away. Many doctors believe that the sooner you have it, the better, but I wasn't convinced.

I did have a cancer coach that I spoke to on the phone regularly, and she really helped me make that decision. She, herself, was much younger than I, but had lived through three different bouts of a blood cancer. It was so easy to talk with her. She understood without any explaining.

So, what are some of the advantages of me having been a provider? Or what gives me a unique lens of going from provider to patient? Well, one thing I would say is that having worked in a pain management clinic, I was meeting with people whose pain had changed the quality of their lives. So, I had an understanding of what it took to be a high-quality provider, to truly listen without assumptions.

Often, whenever our team would get together, I'd notice there was a feeling in the room of "there, but for the grace of God go I," especially when we were discussing somebody whose situation was uncomfortable. Now, that can be a healthy way for providers to separate, to take care of themselves, be able to think clearly, to distance themselves.

But, it also can be a way to numb out, to not see the whole person, to be more interested in the diagnosis. So as a provider, I appreciated the wholeness of my patients. When I first met with oncologists, it was a very unique and strange feeling for me. I remember one of my first appointments. I had never been to a doctor's office where I thought this person would have a big role in how long I would live.

I had been really rather healthy before that. And it became clearer and clearer to me that the emotional component of this devastating news was not part of their job. Now, of course, some oncologists, they're able to do all of that. But their experience and expertise is knowing what's important, what's out there, what their research says.

Somebody told me that I could meet with a palliative care doctor early on. That was shocking. I associated palliative care with end of life. Even though I knew it wasn't directly linked with hospice, I didn't understand why they would want me to see a palliative care doctor for support. But it became clearer the first time I entered her office, here was a doctor whose training was in understanding everything there was about having this kind of a diagnosis.

I didn't have to explain myself or my feelings. She was interested and available to all my questions, even ones I didn't want to speak out loud to my family and friends. I also know now that I have a connection with a doctor, that as things change and decline, that she'd be available for me. She even made it clear that she'd be available to me in a hospice situation, to discuss whether or not I wanted the option of medications to end my lifeThat's something I haven't made a decision about at this time.

In fact, I have a theory, and I wonder if I'm right or not, that oncologists understand that offering challenging treatment to people that they think are sturdy and solid is easier for them. They know how hard it is to tolerate these treatments. And I think that maybe, if you're the type of person, as I am, that allows your feelings to be more up front, it's hard for them to hear of our sadness, grief, anger. In fact, I cried a lot when I was first diagnosed.

When I pulled my records for a second opinion, I noticed that one oncologist wrote that I had a history of depression. It just simply wasn't true. There was nothing in my chart that said that, not to say anything bad about that. It just wasn't true for me. And I assume that it was because I allowed myself to have feelings in his office. I actually thought that that would be the place to have these new feelings—but it wasn't—not with this particular doctor.

And what was challenging about that is, it increased that feeling of not, of a power imbalance. Remember, I'm a provider myself. I'm used to working with doctors of all types. Surgeons, specialists, but even for myself, feeling that power imbalance was so strong in the oncology department. So I had some shame in not responding appropriately, in addition to the shock of a cancer diagnosis.

Part of what came out of that is, I started to look towards how can I support myself and others to have many, many responses to devastating news? Not just a fighting spirit. I wasn't somebody who was afraid of my feelings. I wasn't going to get stuck in crying. In one day, I could feel joy, grief, sadness, bewilderment, gratitude, all of those—nothing permanent, all impermanent. And that's what works best for me.

You know, in the support groups, I had met so many people. There are often those guys who may or may not have a military background, but they have that “go big or go home.” I love those guys. Once, I remember a very traditionally beautiful, tall blonde woman coming to her first support group meeting. And she was horrified at the rash that the chemo shots into her belly were having on her self-image. This really pushed me to want to educate, to help people, to accept themselves as I was working so hard to accept myself in response to this diagnosis.

So, these are some of the valuable lessons I've learned during my myeloma journey. Whether you're a “go big or go home” kind of person, or you're somebody who just shows their feelings on their sleeve, it's important that you just be yourself. This is the time to find your intuition and your own truth during these very challenging decisions we have to make. Most importantly, try not to have any regrets.

 Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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