Tag Archive for: PEN Network Managers

Five Ways the PEN Empowerment Lead Program Can Support Your Cancer Journey

Our Empowerment Lead program is here to support patients and families around important topics and to provide navigation for the path to empowerment. Our Empowerment Leads are highly passionate empowerment ambassadors volunteering from around the U.S., engaging with the PEN network of cancer patients and care partners, and serving as a direct channel of empowerment.  

1. Utilize the PEN Text-Line

By texting EMPOWER to +1-833-213-6657, you can meet someone with your same condition  and  receive personalized support from our Empowerment Leads. Whether you’re a cancer patient, or a  friend or loved one of a cancer patient, PEN’s Empowerment Leads will be here for you at every step of your journey.

2. Watch PEN Videos

Taking a proactive role in your well-being as a patient is of utmost importance for optimal health outcomes. And PEN videos are a trusted source when seeking out information from cancer experts, patients, care partners, and PEN Empowerment Leads. Whether you’re a newly diagnosed patient, care partner, long-time cancer patient, or other concerned patient advocate, PEN videos provide a valuable way to learn about cancer patient stories, testing information, questions to ask your cancer specialist, how to support and be supported as a care partner, ensuring that your patient voice is heard, and more.

3. Read PEN Blogs

Our PEN blogs are a rich source of support information on a wide range of topics for cancer patients and care partners. The blogs serve as another way to gain knowledge and advice for navigating and coping with your cancer journey. Some recent topics have included mental  health advice, financial support resources, nutrition and exercise tips, COVID-19 vaccine guidelines, patient stories, caregiver advice, genetic testing, and cancer news updates.

4. Download and Use Our Activity Guides

Initiated as a patient and care partner tool at the beginning of the COVID-19 pandemic, our PEN-Powered Activity Guides continue as a way to stay connected and to relieve stress during your cancer journey. Packed with information and support resources, the Activity Guides provide content including clinical trial information and experiences, patient stories and lessons learned, advice from care partners, healthy recipes, music playlists, coloring pages, and more. If you’re a busy cancer patient or care partner, the Activity Guides are easy to print to take with  you to read during travel and waiting room time for cancer care appointments.

5. Learn About Our PEN Empowerment Leads

If you don’t have time to watch a video or to read a blog right away, you can browse our list of PEN Empowerment Leads. You can easily see the community that each Empowerment Lead serves  and read a short bio about their experience as a cancer patient or care partner.

By taking advantage of our PEN Empowerment Lead resources, cancer patients and care partners can gain knowledge and confidence to navigate their own cancer journeys.

Introducing Art Flatau, AML Empowerment Lead

I have decided to try my hand at writing a regular blog.  I hope to write a post every month or so. This first post is something of an introduction.  You can read more of my background on my PEN Empowerment Lead page. I suppose I should mention that I am not a medical doctor and am not giving medical advice. I have in the past written a very occasional blog, largely summarizing conferences or meetings I have attended (Art Flatau’s Blog on Leukemia). My plan is to mostly write about new advances in AML treatment and stem cell transplants (including other cellular therapy like CAR T-cell).  However, I also want to write some about my own experience, particularly dealing with late effects. 

I am an AML and bone marrow transplant survivor. My interests are in new advances in AML treatment including stem cell transplants. As a long-term survivor (the 29th anniversary of my transplant was last month, February 2022) I am also interested in late effects. I have a few ideas currently on subjects I would like to explore further, including: 

Let me know if you have topics that you are interested in. I cannot promise to write about them there are lots of interesting topics in this area that I know little about. 

Finding Value in Your Care: Take Action Checklist

1. Am I getting the best care or even offered the best?  

  • Is the care appropriate for my age? My condition?
  • Am I being given more than one option, if at all possible, with the pros and cons explained to me?
  • Is my provider willing to recommend me to a colleague for a second opinion if I feel that I need one?
  • Does my healthcare provider care for me as an individual or do I feel lumped together with other patients?
    • Do I feel comfortable asking questions? 

2. Are the ordered scans and blood work helping me in my care or are they ordered “just because?”

  • Does my provider explain the reasoning behind these orders (i.e. what information we’re looking for, how this will help progression of my care, etc.)?
  • When the results come back:
    • Do I have access to them? If so, are they easy to find?
    • Are they explained to me in a way that makes sense?

3. Is insurance providing me coverage or am I consistently receiving denials/is my provider having to do a peer-to-peer? 

  • Does my coverage make sense?
    • Are providers transparent about how much something may cost?
  • Are terms explained?
  • Can I easily receive access to a care representative?

4. Does my employer offer benefits that fit what I need? 

  • Health insurance 
  • Short-term and long-term disability 
  • Options for FSA and/or HSA accounts 
  • Employee assistance programs 

5. Are the medications that are prescribed working as intended? 

  • Do I understand how to use them correctly? 
  • Do I feel comfortable telling my doctor if I have any side effects and need to switch to something else? 
  • Are they affordable or are there alternatives? 

6. Is a patient portal available and easily accessible? 

  • Is it easy to find what I’m looking for? 
  • What capabilities does the portal have?
    • Can I message my provider?
    • Can I view lab and imaging results?
    • Can I schedule appointments and see upcoming appointments?
    • Can I see visit summaries of previous appointments? 

Care Partner Profile: Mike Crocker

The first time Mike Crocker became a care partner was in 2016 when his wife Dr. Gerri Smoluk was diagnosed with Acute Myeloid Leukemia (AML). The second time was in 2020 when, after being in remission for four years, Gerri was diagnosed with leukemia again. The two experiences couldn’t have been more different, says Mike.

Gerri’s first diagnosis came shortly after she started a new job. Gerri, who had a PhD in biochemistry, worked in the pharmaceutical industry. She was feeling tired a lot, but she was brushing it off, blaming it on the stress that comes with a new job. However, Mike urged her to see a doctor, so Gerri had a coworker, who was also a doctor, check her out. The coworker sent Gerri directly to the emergency room. She was admitted and was in the hospital for 45 days undergoing chemotherapy. “She had a very severe case,” says Mike.

It was overwhelming to say the least, but Mike quickly took on the role of caregiver. He soon realized that the simple things were the most helpful. Mike made sure to bring Gerri some of the comforts of home. He made sure she had t-shirts and sweatshirts to wear instead of hospital gowns. He brought Gerri her laptop and yarn for crocheting. He brought her the few foods that she could actually taste after the chemo wiped out her taste buds. Mike was also her sounding board. He listened as she talked through her care options and how they would affect her quality of life. He was simply there for her, walking with her daily so she could get some exercise and maintain circulation, so she didn’t have to stay in bed with the compression sleeves on her legs. “I did all the little things that could help her be a little more in control and have as close to a normal day as possible,” says Mike adding that Gerri’s background in biochemistry and the pharmaceutical industry gave her unique insight into her care. “She started charting her tests and data so she could be a part of the solution and have informed discussions with doctors. She wanted details and wanted to know what to expect.”

Mike and Gerri learned that patients and care partners are given overwhelming amounts of information and that they have the responsibility of learning all they can and asking questions and making decisions. He says that doctors aren’t always keeping up with the latest research and that it is easy for them to get stuck in routine treatments. He found that doctors talk about options based on their experience and their skill set, but that doesn’t mean that approach is best for the patient. He says that being comfortable with the doctor and getting a second opinion if wanted are also important. He and Gerri learned to be active participants in her treatment and care.

In addition, Mike and Gerri were always looking ahead and focusing on the future. He concentrated on keeping her spirits up. When she was bald from chemo Gerri was looking at wigs and Mike says he encouraged her to go wild and get a bright red wig. “She didn’t go for it but being outrageous and adding humor to the moment was a way for me to help,” he says.

It was while she was in her fourth year of remission that Gerri found Patient Empowerment Network (PEN). “Gerri liked PEN’s focus on making the information understandable for patients, giving them easy-to-digest information to make decisions,” says Mike. Gerri jumped right in and helped to develop the Network Manager program which launched in March 2020. The program is made up of volunteers around the country who use their own patient experience to support patients and their care partners through their own cancer journey and on to a path to empowerment. “PEN is very important because it is patient-focused,” Mike says, and that’s why PEN appealed to Gerri. She liked that she could use her scientific background to help patients understand the information and to make sensible decisions for themselves. Gerri served as the AML Network Manager and was named a finalist for the 2020 Reuters Patient Champion Award in the Patient Advocate category.

Then in July 2020, Gerri got her second diagnosis. She celebrated her birthday July 7 and a week later, Gerri was back in the hospital. “This time she had a second type of leukemia which threw doctors for a loop,” says Mike. “Usually when leukemia patients relapse, it’s with the same type of leukemia.”

Although they had been through a leukemia diagnosis before, this experience was nothing like the first. “It was very different. It was during covid so of course, unlike before, when she could have friends drop in, she no longer could have visitors. Everything was more restrictive with covid,” says Mike. “At least I could be there every day.”

This time, Gerri and Mike were not expecting a longer hospital stay. They were expecting outpatient treatment that would be easier, and they were looking forward to time away from the hospital. The first time was so scary, but this time they were experienced, and they knew what to expect, but what they expected is not what happened.

After about a week Gerri got worse. Doctors were trying to figure out what was wrong, but they were unable to save her. Gerri died July 27, 2020. The autopsy revealed she had an antibiotic resistant bacterial infection.

More than a year later, Mike says he’s doing okay. “Everyone handles it differently,” he says. “You have to give yourself permission to not be happy and also give yourself permission to keep going and find other things to fill the hole.” In September 2021, he retired from his career as a web project manager, and recently he reached out to PEN looking for a way to use his skills to help others. “Gerri was the driver, so now I’ve been drifting,” he says. “That’s why I contacted PEN. I wanted to do something of value.”

Mike will be an invaluable addition to the PEN network of volunteers.

How an MPN Patient Resumes Exercise After Time-off

How an MPN Patient Resumes Exercise After Time-off from Patient Empowerment Network on Vimeo.

MPN Network Managers Summer and Jeff talk about Summer’s journey to resuming exercise after a shingles diagnosis.

Summer believes exercise is important and strongly helps with her myelofibrosis. She currently does a daily Zumba session and is working her way back up to 10,000 daily steps.

We would encourage you to continue and be as active as your disease allows you to be.

Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org or text EMPOWER to (833)213-6657.


Transcript:

Jeff:

Hi, I’m Jeff.

Summer:

Hi, I’m Summer.

Jeff:

And we’re your MPN Network Managers for the Patient Empowerment Network, here to talk to you about…

Summer:

Resuming activity after you’ve been laid up and haven’t been active for a while.

Jeff:

How many steps did you get, Summer?

Summer:

8,000. Only 2,000 more to go, so yay!

Jeff:

That’ll be great. Summer’s always been really an exercise addict. She really, truly, she’s tries to get 10,000 steps a day. She does Zoomba for an hour and she really tries to get a lot of exercise. She believes that’s really helped her with her myelofibrosis, but then something happened.

Summer:

Yeah, about the middle of June I got shingles even though I had the vaccine and shingles really made me exhausted. Really affects the nerves, it was horrible. So, I got really out of shape. I was just doing exercises laying down, mainly. So now that I am recovered, I’m trying to get back in shape.

Jeff:

And how are you doing that?

Summer:

Well I started out trying to do 30 minutes of Zoomba on my exercise tape, and that was only a couple of days ago, so I’ve gotten up to 50 minutes today. And I’m trying to get a total of 10,000 steps. When I get that goal, I’ll be back where I was before.

Jeff:

And how do…what are you working your way up to it, dear? What’s happening?

Summer:

Yeah, so many steps a day and today I got 8,000. But part of it, this helps your exercise a lot. I hadn’t been clothes shopping in those two months, so we went shopping today and I bought something to wear to a birthday party. So, that kind of renewed me and gave me energy to walk through the mall.

Jeff:

So how many steps did you get in the mall, do you think?

Summer:

I don’t know. I have now, like I said, I have 8,000 total, so I don’t know maybe I got 2 or 3 thousand in the mall.

Jeff:

So, we would encourage you to continue and be as active as your disease allows you to be. It’s sometimes a struggle. You may only be able to walk just around the block, but it’s really important and Summer knows how important it is. And, it’s been a real struggle getting back to where you were. Is that correct?

Summer:

You’re correct. That was the worst thing in my life.

Jeff:

So, that’s our advice to you for this short bit of advice is stay active to the very best of your ability.

Summer:

Right. Well, we better get back to walking.

Jeff:

We have 2,000 more steps to go. Yep. Well that’s our advice for today. Till next time, I’m Jeff.

Summer:

I’m Summer.

Jeff:

Bye.

Summer:

Bye.