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Living with a Cancer Diagnosis Amid the Pandemic


Living With a Cancer Diagnosis Amid the Pandemic from Patient Empowerment Network on Vimeo.

Empowered patients, Honora Miller and Barry Marcus, share what it has been like living through a pandemic while being immunocompromised because of their multiple myeloma diagnosis.


Transcript

Barry Marcus:

I have really never hesitated from telling people that I have cancer and I’m immunocompromised and it wouldn’t be a good idea for me to get together with them and people understand that. They know what kind of times were in so I feel like I haven’t really put myself at risk, I have gone out to dinner a few times at restaurants that have outdoor seating, which is now pretty common in my area, and I’m also very fortunate to have gotten both doses of the Pfizer vaccine, so the interesting part of that is going to be whether I’m going to change my behavior because of that, I know I will continue to wear a mask, always when I go outside even though I’m now vaccinated.

Honora Miller:

Yeah, I have found it interesting actually, among a group of my friends, we meet via Zoom every Wednesday, and it’s been interesting to see over the course of the year that we’re now in this. They certainly know that I am compromised, but they forget, and so, of course, I’ve been directed very clearly that I need to do as much sheltering in place as possible to not go grocery shopping, to have things delivered, or my husband often goes grocery shopping and to really…you know, I can’t go to the gym. The gym has been opened a couple of times during this process, it opens and closes, but I can’t go to the gym, I need to do my exercise differently, I can’t go swimming, so there have definitely been changes and I have taken extra care because I’ve really been told in no uncertain terms that I need to. I’m a little anxious about when my son, who I have a high school student, he’s been having remote school when he goes back to school, if I haven’t been vaccinated yet, I’ve been told that I will need to quarantine from him, so we’re hoping that everything will coincide so that I don’t need to do that.

It requires ongoing planning, and I do have friends who have just spent ski week up and Tahoe, and they invited me to come and I can’t come. It’s not something I can do now, and I feel clear in my mind that this is a period of time where I need to not do things so that I can tell the tale later on, and what this experience was like Once COVID is over ’cause it will be.


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How Can You Overcome Hurdles in Your Health Journey?


How Can You Overcome Hurdles in Your Health Journey from Patient Empowerment Network on Vimeo.

Empowered myeloma patients, Honora Miller and Barry Marcus, discuss the biggest hurdle they faced in their health journey and the importance of finding a healthcare team you are comfortable with.


Transcript

Honora Miller:

Hi, I’m Honora Miller, it’s my pleasure to be the Myeloma Network Manager for Patient Empowerment Network and I look forward to speaking with Barry Marcus.

Barry Marcus:

I’m Barry Marcus. I am 70 years old; I was diagnosed with myeloma in 2015. I am a retired Geologist, I worked for the sacrament of County Environmental Management Department for 20 years, and I’ve been retired since 2012. I think my biggest hurdle was finding an oncologist that I was very comfortable with that didn’t hesitate to give me all the information that I wanted, and it took me a while. When I first had my diagnosis, I was in a health plan where I had a very hard time understanding my oncologist, I didn’t have a lot of confidence in him, and I was able — because I had just turned 65 to get on Medicare and change health plans outside of the open enrollment process, and I was fortunate enough to find an oncologist that I now have complete confidence in, and I’ve been seeing him for four or five years now, and I wouldn’t want anyone else.

Honora Miller:

That’s great to hear that you have found someone you’re comfortable with. That makes such a difference. I found that for myself personally, the greatest challenge was to actually get diagnosed, I was comfortable with my medical providers, yet we didn’t know what was going on with me, and it was through their perseverance in tolerating my ongoing questions, they were really helpful in continuing to do testing, because we had no idea I had mild anemia that persisted and I had fatigue, and they had no idea what that was, and I was fortunate enough that I felt confident in those medical professionals that when I did get a diagnosis, through a lot of perseverance I felt like, okay, we got to roll. The data showed that I needed to move quickly. I can’t imagine what I would have done in that moment if I didn’t feel comfortable with them.

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Is There Value in Seeking a Second Opinion?


Is There Value in Seeking a Second Opinion from Patient Empowerment Network on Vimeo.

Empowered myeloma patients, Honora Miller and Barry Marcus, share the importance of getting a second opinion and how to navigate if you are reluctant to ask for another physician to review your case.


Transcript

Barry Marcus:

I sought out a second opinion right after my initial diagnosis, I knew very little about multiple myeloma when I was first diagnosed, and as I just mentioned, I didn’t have a lot of confidence in the doctors in my initial HMO, so I wanted to make sure just for myself and for the future, whether what they were proposing as a treatment plan made sense for me, and so I did seek out a second opinion and I was so glad that I did. It did give me a little bit more confidence in what the initial HMO was proposing because the doctor that I saw, said, Yeah, this is the correct thing to do for you. Now, since I’ve been with the same oncologist now for a number of years, I have gotten second opinions on things that he’s told me I wanted to do, and I did have to overcome my initial reluctance to do that for kind of fear of hurting his feelings or thinking that maybe he wouldn’t like me as much after that, but in speaking with many of the infusion nurses, they say it’s quite common and the doctors don’t mind at all, and it’s really something that I need to do to feel like I’m getting the best course of treatment.

Honora Miller:

I have found too that in speaking with people that same reluctance around not wanting to hurt feelings, but indeed the doctors themselves, I’ve have talked about it directly with my doctor, it’s so common at a practice. It’s just part of their world. Of course, we don’t know that and we’re trying to be sensitive, but they’re not concerned about it at all. In fact, even changing doctors, they don’t even blink at it because they’ve got so many patients that they don’t concern themselves when you decided to move on to a different doctor, ’cause I have changed doctors when I didn’t feel like it was the right fit, oncologists, and that has been a really good thing to do when I didn’t feel comfortable.

When I didn’t feel, I guess it was as a result of COVID, it kind of gave me like another lens to look at my relationship with my doctor and my comfort level, ’cause I’ve had several oncologists, several of them have moved on. Once I realized, okay, this is living with myeloma during COVID, do I feel comfortable with this oncologist being my doctor that I was realizing, no, okay, I need to switch doctors till I feel comfortable, and I did get a referral within the same practice of a different oncologist, and I’m so happy that I did that, ’cause it makes all the difference.

We communicate much more easily, and I feel like if anything goes on with COVID, like I could rely on him to make some good decisions around my health.

Barry Marcus:

One of the things that I’ve come to realize is that treating myeloma is just as much an art as it is a science, and there is no one-size-fits all for any patient, and if I get a suggestion from a second doctor, I bring it back to my primary oncologist, he’s been very accepting of it and willing to consider making some changes maybe that I got from seeking out a second opinion. So, I feel like I’ve been fortunate in that.


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The Value of PEN: Learn More about Your Diagnosis

Video Two of a Five-Part Series

Some of the most comprehensive tools and resources to help and support cancer patients and care partners are available through Patient Empowerment Network (PEN). Video two of the five-part series, The Power of PEN, focuses on the disease-specific networks and resources that PEN offers patients and care partners to learn more about their diagnosis. These resources provide essential information so that patients are better able to understand their diseases, stay informed about treatments and research regarding their diseases, and be active partners in care decisions. The resources in the PEN network are all available for free, with access 24 hours a day, every day.

In this second video, you will meet members of the PEN community who have first-hand knowledge of the benefits PEN has to offer. Board Member Asalia Goldberg notes that the PEN website can help empower and support patients during every piece of their cancer journey.

The PEN website is also useful for care partners, says PEN Network Manager Coordinator Nykema Mpama. She adds that care partners, as well as patients, have access to PEN’s disease network online library, which offers in-depth information and resources to use during a healthcare journey.

PEN’s library of information and resources provides a great deal of disease-specific information, adds PEN MPN Network Manager Jeff Bushnell, who is also a care partner. The wealth of information is collected from doctors and professionals in their fields, and from patients and caregivers.

The PEN resources are a gamechanger for cancer patients who previously didn’t have access to a hub of resources. PEN Board Member Nancy Gatschet shares that when she was diagnosed with lung cancer in 2006, there was no access to the types of tools offered by PEN. She says she is grateful that PEN provides the tools patients need to become educated about their diseases and to feel empowered. Knowledge is every patient’s superpower.

PEN is here to help. Watch the second video and find out how you can get involved.

Learn More about Your Diagnosis from Patient Empowerment Network on Vimeo.