PEN Blog Archives

Welcome to Digitally Empowered®!

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A New Patient Empowerment Course from PEN

Empowered patients who are well-informed and take an active role in their care tend to have better health outcomes. With telehealth, patient portals, and research and treatment information all online, access to the internet has become critical to receiving quality care. However, the ability to access technology is one of the biggest hurdles to learning about health and making healthcare decisions. This hurdle creates a digital divide in healthcare where patients with access to the internet are more likely to have better treatment outcomes than patients who don’t have the skills or ability to use technology to their benefit. That’s a problem, but Patient Empowerment Network (PEN) has created a solution.

Digitally Empowered is a free and easy-to-complete, video-based course, created by PEN and made possible with the support and collaboration of Pfizer Oncology, that provides an opportunity for everyone to have equal access to healthcare resources on the internet. The course helps patients, and those who care for them, develop the skills necessary to access and use online health and support tools.

There is a clear need for programs like Digitally Empowered®. Only 12 percent of adults in the United States are able to obtain and understand the basic health information and services needed to make informed decisions about their care. Older patients are particularly vulnerable when it comes to health literacy because many patients age 65 and older don’t have digital technology skills. Digitally Empowered® is specifically tailored to help older cancer patients, and those caring for them, to be more tech-savvy, but the course has beneficial information to anyone who needs help managing their healthcare online, or who would like to better use online resources to improve treatment outcomes.

Research shows that patients make the best decisions about their care when they are armed with credible information. Patients who are able to access reliable and up-to-date information about cancer treatments can work with their care teams to receive the most personalized care and the best possible outcomes. The Digitally Empowered® course teaches patients how to get the latest credible information, research their conditions, ask pertinent questions, and take an active role in their care and treatment. The course teaches patients how to use the internet, social media, and mobile applications to help them search for information and to connect with other patients. No matter where they are in their cancer journey, the course will help cancer patients and care partners gain access to better cancer care.

To enroll in the Digitally Empowered® course, patients will need an email address. After a few simple steps to create login information there are clear instructions to guide patients through the program. Available in English and Spanish, the course is easy-to-follow, and is divided into ten parts, called modules. In each module, patients watch a short video, review a resource guide, and take a simple quiz to reinforce what was learned. While it’s not necessary to complete the course all in one sitting, the modules are meant to be completed in chronological order and take about ten minutes or less to complete. The entire course takes less than 90 minutes and automatically saves your progress along the way. If you need to leave the course at any time, you will pick up where you left off when you log back in.

In the first module, an animated version of PEN Director of Digital Communications and Engagement, Kara Rayburn, provides an introduction to the course and an overview of PEN’s mission to empower cancer patients and their care partners. She also introduces Carmen and Quincy, the program’s digital tutors. Carmen guides the course through each module and Quincy explains all the technical processes taught. The subsequent lessons take you through the rest of the course objectives which include learning how to access the internet, identifying credible resources and websites, learning the benefits of patient portals, using social media to connect and learn, navigating healthcare with mobile devices, using applications (apps) for convenience and fun, learning how to use telemedicine, and accessing and joining online support communities.

After completing all three steps of each module, participants earn a badge, and after completing all ten modules, they get a certificate of completion. Patients also receive emails of encouragement after the completion of each module. In the end patients will have gained the skills they need to use the internet to empower their cancer journey, but they will also be able to get continued support. Course participants are encouraged to join the Digitally Empowered® Facebook group and to sign up for the Digitally Empowered® newsletter. In addition, course participants can return to the modules to watch the videos and access, or download, the review guides at any time. There is also a Frequently Asked Questions page should anyone get stuck or need help along the way.

The course equips patients with the ability to research their diagnosis, navigate telehealth, and forge beneficial connections to others in the cancer community, all of which could lead to life-changing outcomes. Digitally Empowered was created to help all patients become knowledgeable about their diseases, because where there is knowledge there are choices, and where there are choices there is hope.

Hope for better health outcomes and the Digitally Empowered® course are both available at iamdigitallyempowered.org, and additional support provided by Pfizer can be found at thisislivingwithcancer.com.

Advocating for Key AML Testing: Advice From an Expert

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Advocating for Key AML Testing: Advice From an Expert from Patient Empowerment Network on Vimeo.

Dr. Hetty Carraway, an AML specialist at Cleveland Clinic, shares advice on advocating for yourself when diagnosed with AML, underscoring the importance of asking questions, and including your caregiver as part of the conversation.

Dr. Hetty Carraway is Director of the Leukemia Program at Cleveland Clinic. Dr. Carraway cares for patients with acute leukemia and bone marrow failure states. Learn more about Dr. Carraway, here.

See More From INSIST! AML

Related Resources:


 Treatment Approaches in AML: Key Testing for Personalized Care
 New AML Therapies vs. Traditional Chemotherapy: What’s the Difference?
 Understanding Risk in AML: How Molecular Testing Affects Treatment Options

Transcript:

Katherine:

What advice do you have for patients when it comes to asking for appropriate testing and speaking up in their own care?

Dr. Carraway:            

This is so important. I think patients are leery to stir the pot or be difficult. I think coming from a place of inquiry, teach me about this, that, or the other thing, help me understand this, that, or the other thing – I would like you to show me why this decision or talk with me about why this decision versus another decision might be better for me compared to somebody else.

I can’t underscore the importance of advocating for yourself and asking questions about why am I getting this drug? What are the side effects to this drug? What is my prognosis? What is different about my case versus somebody else’s situation? How do I best prepare myself in getting ready for the therapy that I’m about to go through?

Those are all important questions that patients should ask. They should certainly have people, if possible in their family be advocates for them. I welcome that, and I think that that’s a really important part of going through this type of therapy for any patient. Your physician should welcome having your involvement in that. Don’t be shy about that. It’s your health, and any investment in that the most important people in that is inclusive of you and your caregivers. They should be a welcome part of the team.

The Warrior in Me Saved My Life

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After experiencing increasing fatigue over the course of several years, I started to miss gatherings with friends and family and got to the point of taking one day off a month from work to sleep all day. This was unlike me as I was always very involved with professional and volunteer activities and had a very full schedule including parenting my young son with my spouse. After a lingering cold evolved into bronchitis, I began to explore what was wrong with the assistance of my primary care provider (PCP). I had mild persistent anemia, but nothing to warrant the degree of extreme fatigue that I was experiencing. She (my PCP) was very tolerant of my various Google-induced ideas, graciously accepting some to follow up with tests and others to set aside. 

After eleven months, a test showed that I had elevated M-proteins and my PCP sent me to a hematologist/oncologist who after greeting me reviewed several years’ worth of labs and then turned to tell me to come back in six months. She did not examine me. She did not ask me about my symptoms. She prepared to usher exit the room. I felt that I could not leave her office without her understanding how significantly the fatigue was impacting my daily life. This is when the inner warrior in me said NO! I did not move from my chair. I told her, “Nope. Now is the time that I need to tell you about my symptoms.” (Now this was somewhat uncomfortable for me because I have been well-trained to be polite and professional with doctors, but I had had enough. My New York elbows were coming out!) 

I read from a list that I had prepared detailing what I had been able to do prior to feeling unwell and what I could do now. As I went down the list for several minutes, she looked at her watch in a disgruntled manner, finally asking me “What do you want?” I told her that I wanted to feel well. I did not feel well and believed that something was wrong. I wanted her to do more tests. She agreed and also sent me out to schedule an appointment in six months. One week later at 8 AM as I was on my way out to work, SHE called me to tell me that she had scheduled a bone marrow biopsy (BMB) for the next day. I cleared my calendar. The BMB results confirmed that I had stage 2 Myeloma with more than 80 percent involvement in my bone marrow. My husband and I learned of this on the day before Thanksgiving. We were both in shock. We had so much to learn and at that point had no idea how much this diagnosis was going to change our lives. 

After a quick success of additional tests scheduled STAT, I started chemotherapy within two weeks. Getting a diagnosis took A LOT of persistence and determination when specialists minimized what I knew about my body — that something significant was wrong. And it was. Today is five years to the day of that diagnosis and I still wonder whether I would be diagnosed today if I had not INSISTED upon further testing. To her credit, the oncologist/hematologist did eventually acknowledge that I was right to press her to do more tests and that it was through my self-advocacy that I achieved a diagnosis.

What I would hope that others would take away from this story is how essential it is to be aware of your own body and to keep advocating (again and again) for yourself with doctors even when your symptoms are minimized. I was trained to advocate for others as a social worker, but it took intentional work to give myself permission to say no to doctors at first politely and then later not so politely to demand additional testing until an outcome was achieved that explained my health issues. Be persistent. You know more about your symptoms than anyone else. Do not stop until you find out what is going on with your body.

The Value of PEN: Bridging the Digital Divide

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Bridging the Digital Divide from Patient Empowerment Network on Vimeo.

 Empowered patients who have access to knowledge and information about their illnesses, have better health outcomes, but with many of the best healthcare resources available online, a digital divide has formed among patients. Tech savvy patients are at a definite advantage, while some of the most vulnerable cancer patients, those 65 and older, don’t have the technical skills to access online resources. Patient Empowerment Network (PEN) is changing that with their Digitally Empowered® programs. The fifth and final video of the Value of PEN series highlights the digital sherpa Program, which is designed for people who are not tech savvy. The program helps older, disadvantaged patients and actively trains them, so they have the confidence to access online healthcare resources that are potentially lifesaving.

The digital sherpa® Program is a real advantage for patients, says PEN Board Member LaWanda Byrd. She explains that the program helps to bridge the digital gap so that patients can utilize all the technology available to them. She says many patients are not aware of the technology options and applications available. Through the program, patients are empowered to be more informed and more involved in managing their own care.

Patients don’t need to feel overwhelmed by learning the technology. The digital sherpa® Program is designed for people who aren’t tech savvy so that they can become tech savvy enough to get the information they need, says Board Member Scott Riccio. Access to more information helps patients make better decisions about their healthcare. 

PEN is improving health equity for vulnerable cancer patients through Digitally Empowered® programs. The free programs at PEN are available for all patients, no matter their age or circumstances, and they help provide better health outcomes for empowered patients. Watch the video and find out how you can get involved and get empowered through PEN.

The Value of PEN: Community and Connection

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Community and Connection from Patient Empowerment Network on Vimeo.

 You are not alone. The Patient Empowerment Network (PEN) community understands the anxiety and uncertainty that comes with a cancer diagnosis. PEN helps patients through every step of their cancer journey and offers meaningful and valuable patient-to-patient connections. Video four, in a five-part series about the Value of PEN, focuses on the ways in which PEN helps patients connect with people who have a similar experience. Through social media channels, patient chats, and blog posts, PEN helps patients and caregivers feel empowered, informed, and less alone as they navigate the life-changing experience of a cancer diagnosis.

Nancy Gatschet is a PEN board member and a cancer survivor who emphasizes the need for patient-to-patient connection. She explains how important it is to have support from people who understand what you’re going through. She says, through PEN, patients can talk to each other and share experiences and that anyone anywhere can connect. The programs and resources offered through PEN are free and are available all hours of the day, every day.

When members of the PEN community connect, they find hope, says Board Member Scott Riccio. He describes the patient-to-patient connections as fantastic because through the community at PEN patients learn that they really are not alone and that there are other people who have been through what they are going through.

The chats on Twitter were particularly helpful to PEN Network Manager Carly Flumer, who is also a cancer survivor. She found that she was comfortable in the Twitter chats knowing that she could ask questions of other people with similar experiences who would understand her without judgement. Patients can follow the chats, called Tweet Chats, through the hashtag #patientchat.

 Getting connected and feeling less alone leads to patient empowerment, and the best cancer care happens when you’re empowered. Watch the video and find out how you can get involved and get connected through PEN.

Assisted Living for Cancer Patients

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Learning that your loved one has cancer is one of the most devastating things in life. But, this devastating news also comes with some hard and important decisions you must take post-diagnosis in terms of the care and treatment. Of those decisions, deciding where to receive treatment to start the recovery process is a crucial one.

While some choose the at-home treatment option, others prefer faith based assisted living for cancer patients. This post talks about when it makes the most sense to go with the latter option and how to find the best assisted facility for your loved one.

Understanding the Cancer Diagnosis

Be sure to speak with the healthcare team involved in the treatment. That means communicating with oncologists, radiologists, palliative care teams, pathologists, etc.

After that, you might want to answer these questions to know where it makes sense for the patient to live (permanently or temporarily):

  • What’s the current cancer stage and what do the treatment options look like?
  • Is it treatable?
  • Do you need more tests to decide the treatment?
  • How long the treatment might last?
  • Are there any side-effects of the treatment?
  • Where will the person receive treatment?
  • Would you need tests during the treatment as well? If yes, how often?
  • Would the patient need a special diet during the treatment?

The Age Factor

In the elderly, cancer treatment comes with greater challenges. That means, there’s a great chance of compromised strength and bone health, delayed healing, cognitive stress, depression, and the possibility of dementia. All of these factors can complicate the course of treatment.

Do think about the age factor and the possibility of needing pain management strategies later on. Discuss with healthcare professionals to understand how the age connects with possible complications and accordingly decide the course of treatment. This might offer you some guidance as to whether or not you should go with assisted living for cancer patients.

When Assisted Living Makes Sense and When It Can Help

Assisted living offers a highly safe environment. The assurance that your loved one will receive proper care, coupled with a tidy, hygienic, living space, emotional support, and healthy meals can offer additional peace of mind.

There are instances where the cancer is treatable, but the recovery process is often longer. This makes it difficult for families to manage their daily routine and perform everyday tasks. In that case, assisted living facilities can be the best thing. If the patient has some other underlying condition, living at home can be a more significant challenge. It’s best to go with an assisted facility in such conditions.

How To Choose the Right Living Community

After you have shortlisted a couple of facilities, it’s good to start by compiling a list of standard questions to ask. You may want to add some of your own that fit your personal preferences and care-related needs of the patient. For example, whether or not the facility allows pets – if it’s LGBTQ-freindly place – and if couples can live there.

Online 3rd party reviews are some of the best sources to gain insight into the facility. Feedback from people who received the services first-hand can also offer vital information.

Additionally, you can ask for recommendations from social workers, doctors, and hospital’s discharge planners.

Questions To Ask About Cancer Care

Be sure to ask these cancer-care questions to the assisted living facility to shortlist the best one:

  • Perhaps your loved one does not need any specialized services now, but they may need it sometime in the future. If that’s the case, it’s good to pick a facility that can be flexible and respond to the ever-changing needs of the cancer patient and their care. This can avoid the need to switch facilities and avoid expenses that come with moving.
  • Will there always be a nurse present at the facility?
  • What are the physician’s visiting hours for the residents? How do they communicate with primary care physicians and what duties they perform?
  • Do they allow hospice care?
  • Will the family have to bear additional transportation cost? This can be a huge governing factor in the case of loved ones who need frequent visits to the hospital for treatment. Always pick a facility that offers free transportation if no family member is present during the day to take them.
  • What’s the protocol for responding to emergency medical incidents? See if the facility can quickly transfer your loved one to the hospital in case of a sudden emergency.

Remember, the best facility is the one that can offer optimal living conditions for your loved ones. It should offer the best conditions for the person to thrive during some of the most challenging times of life.

Long-Term Advantages of Assisted Living For The Elderly

Assisted living facilities inherently encourage healthy lifestyle choices and routines, which eventually translates to a better quality of life. Ultimately, these habits and lifestyle can reflect on how quickly the person responds to the treatment and an overall sense of independence when it’s time for them to live on their own after the treatment is over.

The elderly need certain precautions after the treatment because of the possibilities of complications and being more prone to falls. Access to regular medical care by therapists means that the seniors will be able to manage themselves better and stay more active.

Assisted living facilities offer an overall healthy lifestyle and give patients a sense of socialization which is super essential because illnesses like cancer can be isolating. A sense of community can and may help quicken the recovery process and encourage a healthy lifestyle even after chemo and other treatments are over.

How Can You Insist on Better Prostate Cancer Care?

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How Can You Insist on Better Prostate Cancer Care? from Patient Empowerment Network on Vimeo. 

How can prostate cancer patients access the best care in an evolving treatment landscape? Prostate cancer survivor Jim Schraidt shares his advice for staying up-to-date about treatment developments and for accessing support and resources

Jim Schraidt is a prostate cancer survivor and Chairman of the Board of Directors for Us TOO International. Learn more about Jim Schraidt here.

See More From INSIST! Prostate Cancer

Related Resources

How Does Us TOO International Support Prostate Cancer Patients and Their Loved Ones?

How Does Us TOO International Support Prostate Cancer Patients and Their Loved Ones?

How Could You Benefit from Joining a Prostate Cancer Support Group?

 Newly Diagnosed with Prostate Cancer? Consider These Key Steps

Newly Diagnosed with Prostate Cancer? Consider These Key Steps

 

Transcript:

Jim Schraidt:              

The really great news is that sort of across the board, from early stage disease through metastatic prostate cancer patients, there are advances that are occurring very rapidly at this point, so rapidly that practitioners have difficulty keeping up with them.

And, honestly, those of us who do some patients support likewise have difficulty keeping up with them. I think, once again, these support groups can serve a useful function in that you have specific questions, you hear about it, you bring together a group of individuals, and somebody in that group may know something about it.

And they can tell you, they can give you information, or they can give you direct Internet links where you can find more information. The other source of information is some of the Us TOO publications, our monthly hot sheet, as well as the website.

There are a couple other websites that I personally regard as excellent. The first would be the Prostate Cancer Foundation. The second would be Prostate Cancer Research Institute. And then finally, ZERO. So, I think if you attend a support group, and talk to other guys, and look at some of these websites, I think that’s a very good starting point for research and trying to get the best and most up-to-date information possible.

There’s a lot of progress being made across the disease spectrum, and it’s very exciting. I mean, for many years, all we had was surgery, radiation, and hormone therapy. But new things are coming online all the time. There are immunotherapies that are frequently genetically based. And there’s new knowledge about the disease itself and making active surveillance available to more patients.

And this is extremely critical because many men can go on with prostate cancer, with low-grade disease, really for their entire lives, and avoid the side effects of treatment.

And even if they don’t, if they delay definitive treatment for a period of years, there may be something new that comes down the pike that is both effective and has a better side-effect profile. This is the kind of research that is a part of what Prostate Cancer Foundation is funding.

So, there’s a lot out there. There’s a lot that’s happening. And I think that should give encouragement to prostate cancer patients. In terms of somebody who is later in the process and having difficulty coping with side effects or disease progression, I think the encouragement is that there are people out there that you can talk to about it, that you’re really not alone, and there are people out there that are anxious to help you, to hear from you, and provide assistance.

For those of us who have been at it a while, we find that helping others enhances our own healing. And so, don’t be reticent about asking for help. Because it’s out there, and it can really make a difference.

The Value of PEN – Free Resources For Cancer Patients

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Free Resources for Cancer Patients from Patient Empowerment Network on Vimeo.

The best cancer care comes when a patient is empowered with knowledge and the resources to know what questions to ask and when to ask them. Video three, in a five-part series about the Value of Patient Empowerment Network (PEN), highlights the free resources PEN offers for patients and their loved ones. Featured in the video are ways in which patients can easily engage with their doctors and other members of their care and support teams. From the comprehensive activity guide designed to make patients feel more relaxed and less overwhelmed during their cancer journey, to the scripted questions patients can use when meeting with their doctors, PEN is here to help.

PEN Board Member Nancy Gatschet is a cancer survivor, and she speaks from experience when she says that PEN is a tool to empowerment. She emphasizes that through the resources provided by PEN, cancer patients become comfortable communicating needs and feelings with doctors, friends, and other members of their support network. She says it’s important for cancer patients to speak up for themselves and that PEN helps patients do just that. Part of the free resources available through PEN 24 hours a day, seven days a week are questions and scripts that patients can use to prepare themselves to speak with their doctors. PEN helps patients identify the critical questions they need to ask and offers suggestions about how to ask them.

PEN encourages all patients to be empowered, but for many people a cancer diagnosis can be overwhelming. Board Member Asalia Goldberg says that there are so many unknowns that patients face when they are about to enter treatment, but if they are equipped with not only answers, but also the critical questions they need to ask, they become their own voice and their own advocate, and they become empowered through their cancer journey.

Through resources like the scripts and activity guide provided by PEN, patients can have more productive doctor appointments. There’s even a checklist for patients to use to make sure they didn’t forget anything. Learn more about the many free resources available through PEN’s website, workshops, webinars, social media channels, and network managers. Watch the video and find out how you can get involved.

9 Tips to Help You Build a Better Advocacy Blog

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Do you blog about your illness?

Many patients find blogging about their condition is not only therapeutic, but is also a great way to connect with others going through similar experiences. 

A blog can also be a powerful advocacy tool – a way to raise awareness, build community and show commitment and passion for the work you do.

This month, I’d like to share 9 ways to help you build a better blog. If you’re new to blogging, these tips will help steer you in the right direction. If you’re a seasoned blogger, why not use this as an opportunity to take stock to see if you’re still on track to make an impact with your blog.

1.Perfect Your About Page

For new visitors to your blog, this will be one of the first pages they will visit, so it’s worth taking time to make it as professional as possible. Use this space to share the story of why you do what you do to advocate for disease awareness and educate and support your community.

2. Check Your Blog’s Load Speed

Does your blog load quickly? A good site will load in 2 seconds. If your blog is taking longer than that, consider that around 40% of people will leave a site if it doesn’t load in 3 seconds. You can check your blog’s loading speed with a tool like GTMetrix.com.

Insider Tip: If you like to add lots of images to your blog, be aware that large images can slow your blog down. Resizing your images can speed up the loading time. Upload your image to Picresize.com for quick and easy resizing.

3. Declutter Your Sidebar

Does your blog have a sidebar? Has it become crowded with widgets? Then it’s time to declutter Marie Kondo style. Get rid of anything that doesn’t add something valuable to the reader’s experience.

4. Showcase Popular Content

One thing that you should keep on your sidebar is a list of your most popular content. Use this space to showcase your best writing. And be sure to put hyperlinks in each of your posts that direct people to other popular posts on the same topic.

5. Make It Easy For Readers to Find Information on Your Site

Providing helpful information is great, but you also need to be sure that readers can find that information. By adding categories and tags to your posts, you make it easy for readers to find the information they need when they come to your blog. It also increases views on your other posts tagged with the same keywords.

6. Create An Email Sign-Up Form

Encourage readers to sign up to receive your latest posts. Nancy Stordahl, who blogs at NancysPoint.com, advises “anyone who wants to increase readership to her/his blog to consider sending out a monthly or weekly email with links to new posts and possibly one or two older ones. “I became very frustrated with Facebook’s algorithms because it seemed no one was seeing posts I shared. Having your own email list puts you and your readers in control.”

7. Add Social Sharing Buttons

By making it easy for visitors to your blog to share your content, you increase the likelihood that they will take this action. When more people share your content, you increase the chance of driving more visitors to your blog, and having your content seen by more people.

8. Choose Typography Carefully

Typography is made up of elements such as font type and size, kerning (white space between individual characters or letters), and tracking and spacing. It’s an important factor in making your content more readable for visitors to your site.

9. Backup Your Blog

Finally, you’ve put a lot of effort and time into your blog and you don’t want to risk losing all your great content. You never know when your blog might get hacked, and the best defense is scheduling regular backups using a plug-in like BackWPup.

Happy Blogging!

What Is the Patient’s Role in Making AML Treatment Decisions?

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What Is the Patient’s Role in Making AML Treatment Decisions? from Patient Empowerment Network on Vimeo.

What role do acute myeloid leukemia (AML) patients have in their treatment decisions? Dr. Pinkal Desai explains factors that go into decision-making and how patients may help guide the treatment option that’s best for them.

Dr. Pinkal Desai is Assistant Professor of Medicine at Weill Cornell Medical College and a hematologist specializing in acute myeloid leukemia (AML) at Weill Cornell Medicine. Learn more about Dr. Desai, here.

Download Program Resource Guide

See More From The Pro-Active AML Patient Toolki

Related Resources:

What Are the Goals of AML Treatment?

What Are the Goals of AML Treatment?

 Choosing an AML Treatment Path: What Should You Consider?

Choosing an AML Treatment Path: What Should You Consider?

Being Pro-Active in Your Care: Key AML Testing to Advocate For

Transcript:

Katherine:                  

What is the patient’s role in this decision?

Dr. Desai:                   

I think it’s important for patients to understand why the decisions are being made or what goes into the decision-making. Because the patients would appreciate, if they know, that these are the genetic subtypes, and this would be the best sort of approach for them.

So, from a patient’s side, their role is, 1) to understand all the factors that go into the decision-making. And the second aspect, which is important, is their own values and their own decision on what treatment they would like to have. 

So, there are – sometimes, it’s very white and black. There are many times where it’s a gray zone, in the sense that there is a best treatment that’s available, that the oncologist would discuss, but it’s also possible to choose between two different kinds of therapy options.

If the patient is eligible, for example, for both intensive and non-intensive treatment, then what would they prefer based on what’s going on in their life? Whether they want to be hospitalized for 30 days for intensive induction or not? Do they want to do this out-patient? A lot of these things are important, and they have to be involved with this.

The third aspect, which is very important from a patient standpoint, is the need for transplant. So, patients who are younger and transplant eligible for leukemia that has a higher risk of coming back, we do recommend a stem cell transplant, so that the patients have to understand the process of stem cell transplant.

Sometimes, it’s slam dunk that a transplant is needed, but there are certain times where you could or could not go for it, and this is where the patient’s choices and values are extremely important, that once they hear all of this information, they would decide whether they should or should not go for stem cell transplant.

The Value of PEN: Learn More about Your Diagnosis

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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.

 

How an MPN Patient and Caregiver Make the Most of Life

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How an MPN Patient and Caregiver Make the Most of Life from Patient Empowerment Network on Vimeo.

 MPN Network Manager Summer who lives with myelofibrosis and her care partner Jeff discuss the importance of not putting your life on hold. Summer continues to work on her comedy routine and Jeff has been enjoying ZOOM photography classes. Watch to hear how else Summer and Jeff continue to make the most of life despite any challenges that may present itself. 

“We have not put our lives on hold during COVID or as a result of Summer’s MF diagnosis. Our challenge to you is to do the same.” 

Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org

The Caregiver Impact: A Vital Part of Healthcare

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Carly FlumerCarly Flumer is a young woman who was diagnosed with stage I papillary thyroid cancer at the age of 27. She recently received her Master’s degree from Boston University […]

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Braving the Caregiver Storm

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As I sit here looking out the window at the snow that is beginning to fall, I am transported back to January 2011 when I was 28 and my 35 year old husband was diagnosed with leukemia. I was thrown into a snow storm I was definitely not prepared for nor did I think I’d be in. I had little visibility in front of me as the snow fell and flew all around me. I knew cancer was something that had been around for a very long time, and that the knowledge was out there…but as a young woman, I was standing in my own little snow globe without boots, a scarf, or mittens. I had my marriage that I wrapped around me like a warm coat, and held onto that while I attempted to find resources to guide me thorough this new life of mine.

My days of working full-time, then coming home to relax had been exchanged for quick trips to let the pets out after work, then jetting over to the hospital to spend a few hours with my husband before driving back home to spend a few minutes with my pets before going to bed and starting the cycle all over again. I was exhausted and had to figure out how to get warm, protect myself from the elements and survive!  However hard and unknown it all was, I found comfort in knowing that although I was the only young person I knew to go through what I was, millions of people had done it before and I could too. I didn’t know how I was going to do it, but knew I would somehow.

I began to gather resources online by spending hours upon hours late at night on the internet. I looked up financial resources to help with gas cards, how to navigate insurance, disability, and requested all of the brochures possible from the Leukemia and Lymphoma Society and the American Cancer Society. As I gained more knowledge, I felt myself slip into a warm pair of boots, feeling like I had more secure grounding. I was better informed and felt more armed to walk down the road of the cancer journey, despite still not being able to see through the masses of swirling snowflakes and at times, sleet.

I quickly realized that one of the most major parts of this journey was to take care of myself. At first it felt somewhat selfish, as my husband was the patient…however I had to figure out what worked best to keep my batteries charged and running, even when the snowy road threw my tires into a ditch. I started creating blog posts to inform and update our supporters on CaringBridge and Facebook, which allowed me to feel safe, supported and heard, while still having boundaries to not be overloaded via text, phone and email from all of those that wanted to know how things were going. This social support provided the needed warmth on my hands, giving me mittens to keep from getting frostbite from the dangerously low temperatures here in Minnesota.

I learned that taking time away for myself whether it be a cup of tea with a friend, taking a nap, a walk or binging a favorite TV show, was what I needed to do to be able to recharge my batteries to be in the right mental and physical space to be there for my loved one. Caregiver burnout is very real, and I often burned the candle at both ends, learning the hard way why self-care needed to be more of a priority in my life.  I don’t think that our supporters and loved ones can fully grasp or understand why it is so important to go to dinner with friends or to a movie or concert (outside of Covid-19 times of course), when your loved one is in the hospital or stuck at home.  What those that aren’t going through what you are in this crazy world of cancer don’t know is how hard it is to balance it all. Cancer is the belligerent relative at the holiday gathering that no one really knows how to deal with or control. They are there for better or worse, and it’s up to you to know how to balance and work with what you’ve been given.  When you take the time to understand and embrace what is….you can feel more at peace in taking the cancer process day by day, if not hour by hour.  You have to let the little things go, your house may not always be sparkly clean and everything may not get done- but the cancer patient has everything they need and you are a more balanced person to support them. Once I figured out how to balance things better, a scarf was wrapped around my neck, and I was better prepared for the snowstorm.

Cancer is definitely not something that is asked for, however with adequate resources, knowledge, social support and the practice of self-care, it is all doable.  I was able to take my experience as a cancer wife, then widow and beyond to create a book to share with the world on how I navigated the cancer world one day at a time, and live today with such thankfulness for the journey that brought me here today. I still absolutely love snow, and am excited for the snowstorm that is supposed to hit this afternoon with 4-7 inches, as I now know the ways to make sure I am storm ready to walk through the journeys in front of me, as you too, walk through your own snowstorms as well.

Embracing the New Normal

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People are going back to work, kids are going back to school, and more and more businesses are opening up. But, at least for the time being, it looks like the coronavirus is here to stay, so we are going to have to make adjustments to our lives and embrace the new normal. Whether you are running out the door or cautiously putting a toe out, it’s important to remember that life in the time of Covid-19 is a marathon, not a sprint. There is no one way to move forward, but if you need help getting started, we’ve rounded up some of the best advice from our past PEN-Powered Activity Guides to get you started.

Stay Connected

Social distancing, or as we like to call it, physical distancing does not have to mean loneliness. Depending on your comfort level and/or the restrictions in your area, you can stay connected in a variety of ways. Some states have relaxed their stay-at-home orders, and you can now resume many normal face-to-face activities including dining out or returning to places of worship. If you live in one of those areas and want to take advantage of in-person meet-ups, make sure you continue to follow the health and safety guidelines by:

  • Wearing a mask
  • Frequently washing your hands
  • Avoid touching your face.

If you aren’t quite ready for face-to-face interaction, there are many ways to connect such as participating in online communities, using Facetime or Zoom to get together with friends, or joining a group such as a virtual book club. Find other ideas to stay connected in PEN-Powered Activity Guide (PPAG) II, page 1.

Utilize Technology

If the 2020 quarantine taught us anything it is that technology is one of our greatest modern-day assets. Thanks to technology we were able to continue to see doctors and therapists, see the world (PPAG II, page 27), keep up with our workouts (PPAG IV, page 34), and manage our accounts all without leaving our homes. As we move forward, the ways we used technology during quarantine are influencing our new normal, especially when it comes to our health. One of the best ways for patients to take charge of their health is to keep track of all aspects of it. 

Managing prescriptions (PPAG II, Page 4), paying bills, scheduling appointments, and keeping up with test results can all be done online, and now many of the time-consuming appointments of the past can be done through telemedicine saving both patients and doctors valuable time. Learn about telemedicine in detail from PPAG III, pages 7-21.

Practice Self-Care

Your schedule is likely filling up again making it hard for you to take time for yourself, but it’s important to recharge. Make time for relaxation (PPAG II, page 19) and exercise. There are substantial benefits from a walk around your neighborhood (PPAG II, page26), or a few minutes of chair yoga (PPAG III, page 25). Practicing mindfulness such as meditation or yoga can also benefit your overall health (PPAG IV, page 14). You don’t have to spend a lot of time on self-care, but the time you do spend will serve you well.

Stay Safe at Home

You may be leaving your home more now, but when you are at home it should feel like a safe space, especially when the world can feel a little unstable right now. Keep your environment as peaceful as possible by decluttering and surrounding yourself with things you love. You can find some other ways to make your home a sanctuary in PPAG IV, page 18.

Follow Best Practices

By now we all have heard the Centers for Disease Control’s guidelines to help prevent the spread of coronavirus. They include washing hands, wearing masks, and keeping your distance. In addition, you can help to stay healthy by eating well to improve immunity. Getting proper nutrients, prebiotics, probiotics, vitamins, and minerals are all ways to help your immunity. Learn more about eating for your immunity in PPAG IV, pages 26, 27, and 28. You can find other tips about eating well in PPAG III, pages 30 and 31.

One other thing to remember is that if you were doing something during your coronavirus quarantine that you enjoyed doing, keep doing it. New exercise program? Keep it up. Meditating to relax? Keep it up. Did you find a podcast you love? Make time to listen to it. If you need a new podcast, there’s a great list in PPAG II, pages 16 and 17. The bottom line is this: while things may look and feel different, the fundamentals remain the same. Eat Healthy, Be Active, Sleep Well, Wash Your Hands (PPAG IV, page 25).