PEN-Powered Activity Guide VI

HOW CAN YOU ADVOCATE ?

Empowered Patients Empower Patients : How to Take Charge of Your Diagnosis

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Different Forms of Patient Advocacy

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The Warrior in Me Saved My Life

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PEN Network Managers : What Does Patient Advocacy Mean to Me ? BE EMPOWERED

How Can You Overcome Hurdles in Your Health Journey ?

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Is There Value in Seeking a Second Opinion ?

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Health Care Coverage Special Enrol lment

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Living with a Cancer Diagnosis Amid the Pandemic

COVID -19 Vaccine Guidel ines and Cancer Patients

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EATING WELL

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Uncovering the Hidden Health Benefits of Garl ic

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Zesty Lemon Parmesan Brussels Sprouts

Power - Packed Pumpkin Hummus

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Hai l to Kale : Spicy Sausage , Kale , and Goat Cheese Pizza

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Green Monster Frittata Bites

RELAX AND HAVE FUN

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Make the Most of Life

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PEN Book Club

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Word Search

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Be Empowered Playl ists

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Spotl ighting Advocacy Organizations

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Stay Connected

THE POWER OF THE PEN NETWORK MANAGER PROGRAM

I never dreamed of being a patient advocate , but then again , I never dreamed of receiving a cancer diagnosis , either . When I was diagnosed with thyroid cancer in January 2017, I didn ’ t have any symptoms . I was told I had the “ good ” cancer or “ the cancer to get if you had to be diagnosed with one ” by my doctors . I took this information to heart , and accepted that cancer was now a part of my l ife , and there wasn ’ t anything I could do about it . It wasn ’ t unti l I ended my treatment , when I declared myself a survivor , that I real ized I was completely wrong . I recognized there were choices I could have made regarding my treatment plan and there were sti l l opportunities to take charge in how I was treated as a patient . Enter patient advocacy in the cancer world . Everyone has a story , no patient or cancer is the same . We each have our own unique experience of how we move through the healthcare system beginning the day we ’ re diagnosed with the “ C ” word . I knew my story was unique because I was an AYA patient , or an adolescent and young adult , I was working ful l - time , and I was in graduate school . I dreamt of being publ ished on places other than social media . I wanted an outlet where I was free to share my side of the story without having to hold back . A place where I could share not only the ups and downs of my journey , but my own insights of what it was l ike to be a young cancer patient . A place where I could advocate for other thyroid cancer patients – let them know what to expect , the questions they should ask of their care team , and how to best take care of themselves . Enter the Patient Empowerment Network . Patient Empowerment Network ( PEN ) is an advocacy organization for cancer patients whose “ mission is to fortify cancer patients and care partners with the knowledge and tools to boost their confidence , put them in control of their healthcare journey , and assist them with receiving the best , most personal ized care avai lable .” I discovered them through one of their tweet chats on Twitter using the hashtag # patientchat . I immediately reached out to see how I could get involved . Leadership discussed their strategic vision of having “ managers ” for different cancers that would create and curate content to educate other cancer patients and help them feel empowered . I was honored when I was told that I would pi lot this program as the Thyroid Cancer Network Manager , and my content would be read and shared by others .

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The PEN Network Manager program official ly launched in March 2020 with the goal “ to support health communities around important topics and provide navigation for the path to empowerment . Through various mediums , social media platforms and content formats , network managers develop specific messages , seek out resources and contribute to ampl ifying the needs of specific health communities via guidance of an establ ished editorial calendar .” For example , I ’ ve had the opportunity to write a variety of blog posts and participate in tweet chats on a number of different topics , including resi l ience , health l iteracy , telehealth , and what it ’ s l ike to be an adolescent and young adult ( AYA ) with cancer . It has been my greatest privi lege to connect with other patients through this content , inspiring them to be their own advocate . To find PEN ’ s current team of network managers , visit here . Cl icking on each person ’ s picture wi l l bring you to their bio as wel l as content they have created , including recipe guides , interviews , comedy sketches , infographics , and more . Note also that each manager has a personal PEN emai l that you can use to contact them . PEN managers thrive on encouraging patients and their caregivers to feel more confident in voicing concerns and communicating with their healthcare team , and ultimately empower them to become advocates for themselves and their loved ones .

As a caregiver and Care Partner Network Manager with PEN , I constantly search for practical information to use and pass along to those I support . I offer support by l istening and providing solutions to empower caregivers to improve their resi l ience . – Sherea

PEN NETWORK MANAGERS

DIAHANNA VALLENTINE

VOLLEEN WHITE

JEFF BUSHNELL

SHEREA CARY

CORA CONNOR

CARLY FLUMER

SUMMER GOLDEN

SAJJAD IQBAL

MARY LEER

HONORA MILLER

HEATHER SMITH

Joining PEN ’ s network of cancer managers has truly been inspiring . Although we ’ re al l across the world , conversing with them via emai l and Zoom chats and hearing their stories and thoughts of how to resonate with more patients is what feeds my soul . PEN is constantly growing , with their goal of representing al l cancers . For more information on how you can get involved , please contact Nykema , PEN ’ s Network Manager Coordinator , at kema @ powerfulpatients . org .

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HOW CAN YOU ADVOCATE?

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EMPOWERED PATIENTS EMPOWER PATIENTS: HOW TO TAKE CHARGE OF YOUR DIAGNOSIS

Carly Flumer

What comes to your mind when you think of the word “ empowerment ?” Do you think of a specific person , thing , or event ? What about an “ empowered ” patient ? Do you think of a patient or patient advocate who goes above and beyond and fights for their health care , or embodies themselves with a wealth of knowledge about a specific disease ? At the Patient Empowerment Network ( PEN ), we bel ieve that patients have power . They have the power to learn about and understand their diagnosis , find a healthcare team that understands their needs , values , and morals , and support other patients on their cancer journey – al l to create better health outcomes . Are you looking to become an empowered patient ? Here are a few ways :

SHARE YOUR STORY

One of the most important things about your journey is that it is your own . No cancer diagnosis is al ike , just l ike no patient is al ike . Your story is unique , and the power of sharing your story is unmatched . Storytel l ing is what connects others and develops strong bonds . Share your story with your fami ly and friends , post about it on social media , and connect with patient advocacy organizations ( including PEN !) to share your story across the globe .

CREATE A BLOG

Create your own advocacy blog : This article has how - tos and best tips .

JOIN A TWEETCHAT

Participate in Tweet chats : Tweet chats are chats that occur on Twitter at different times / days using a hashtag . PEN has a tweet chat cal led # patientchat that occurs every other Friday . These chats are hosted by a variety of organizations around different topics . As a participant , you answer a series of questions prompted by the host . It can be a great environment to express your opinions and talk about your experience . You can find Tweet chats relevant to you by using Symplur ’ s Healthcare Hashtag Project , which l ists hashtags specific to what you ’ re looking for . You can also see if specific organizations you ’ re fol lowing on Twitter host chats or start your own !

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JOIN A SUPPORT GROUP

Join a support group in - person or onl ine . There are a number of different organizations that offer support groups ( here are some of my favorites !) where you can share your story and hear others ' , ask questions , and relax knowing you ’ re in a judgement - free environment .

UTILIZE DIGITALLY EMPOWERED ™

Uti l ize PEN ’ s Digital ly Empowered Program : This program consists of 10 modules with videos and resource guides to navigate al l that technology has to offer including navigating healthcare resources , forming a support network , using social media , navigating your health with different devices and apps , and using telemedicine .

KEEP UPDATED ON RESEARCH

Keep updated on the latest research about your diagnosis , and share what you find relevant to you with your healthcare team and / or on social media . This article explains how to read scientific papers .

UTILIZE PEN

Uti l ize PEN ’ s onl ine resources tai lored to the cancer community , as wel l as specific cancers , that focus on what to do when you ’ re newly diagnosed , testing and treatment options , cl inical trials , and accessing and affording healthcare .

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DIFFERENT FORMS OF PATIENT ADVOCACY

What is patient advocacy and how can you advocate ? MPN Network Managers Jeff and Summer discuss the various ways in which they advocate . In addition to volunteering with PEN , Jeff actively participates in a support group . Summer who is l iving with MPN has decided to advocate through her humor . Make sure to watch to see a snippet of her stand - up routine !

“OUR CHALLENGE TO YOU IS, AS A PATIENT, FIND A WAY TO GIVE YOUR KNOWLEDGE OF HOW YOU’RE HANDLING YOUR DISEASE TO OTHERS

AND YOU TOO CAN BECOME A STRONG PATIENT ADVOCATE.”

PEN - POWERED ACTIVITY GUIDE | PAGE 08

The Warrior in Me Saved My Life

Honora Miller

After experiencing increasing fatigue over the course of several years , I started to miss gatherings with friends and fami ly and got to the point of taking one day off a month from work to sleep al l day . This was unl ike me as I was always very involved with professional and volunteer activities and had a very ful l schedule including parenting my young son with my spouse . After a l ingering cold evolved into bronchitis , I began to explore what was wrong with the assistance of my primary care provider ( PCP ). I had mi ld 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 fol low 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 tel l me to come back in six months . She did not examine me . She did not ask me about my symptoms . She prepared to exit the room . I felt that I could not leave her office without her understanding how significantly the fatigue was impacting my dai ly l ife . 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 tel l you about my symptoms .” ( Now this was somewhat uncomfortable for me because I have been wel l - trained to be pol ite and professional with doctors , but I had had enough . My New York elbows were coming out !)

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I read from a l ist that I had prepared detai l ing what I had been able to do prior to feel ing unwel l and what I could do now . As I went down the l ist for several minutes , she looked at her watch in a disgruntled manner , final ly asking me “ What do you want ?” I told her that I wanted to feel wel l . I did not feel wel l and bel ieved 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 cal led me to tel l 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 l ives . 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 special ists 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 sti l l wonder whether I would be diagnosed today if I had not INSISTED upon further testing . To her credit , the oncologist / hematologist did eventual ly 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 pol itely and then later not so pol itely to demand additional testing unti l an outcome was achieved that explained my health issues . Be persistent . You know more about your symptoms than anyone else . Do not stop unti l you find out what is going on with your body .

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PEN NETWORK MANAGERS: WHAT DOES PATIENT ADVOCACY MEAN TO ME?

CARLY FLUMER THYROID CANCER NETWORK MANAGER Patient advocacy means speaking up for patients from al l walks of l ife and providing education so that they may get the care that they deserve .

SUMMER GOLDEN MPN NETWORK MANAGER To me patient advocacy means recognition of the whole person , not just the medical aspect .

DIAHANNA VALLENTINE FINANCIAL NETWORK MANAGER

Patient advocacy means helping everyone faced with cancer find al l the resources avai lable to them so they can pay for treatment and stay on treatment to prevent financial toxicity . This includes encouraging patients to empower themselves to ask questions of everyone involved in and influence their healthcare from medical providers to financial professionals to insurance providers .

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SAJJAD IQBAL HEAD & NECK CANCER NETWORK MANAGER To me , patient advocacy means striving for the rights of the patients to expect the best possible care and eventual outcome of their i l lness . A large part of this is accompl ished by educating and empowering patients to become active partners in their healthcare decisions .

VOLLEEN WHITE CLL NETWORK MANAGER

Advocacy equals empowerment . Knowing the best treatment for my cancer and being able to keep up with the latest information in new drugs and new drug trials . Advocacy makes me more informed and therefore able to fight my cancer more successful ly .

MARY LEER BREAST CANCER NETWORK MANAGER Patient advocacy means being an astute l istener who is dedicated to helping educate patients to find resources and , more importantly , their own resourcefulness that wi l l empower them to navigate the myriad decisions that come with a cancer diagnosis .

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SHEREA CARY CARE PARTNER NETWORK MANAGER Patient advocacy for me as a caregiver means being there for caregivers , actively l istening , serving as a safe place to share thoughts , fears , frustration and triumphs .

CORA CONNOR RMC NETWORK MANAGER

Patient advocacy is supporting , bel ieving and being a spokesperson for someone navigating medical or healthcare chal lenges . Being a voice to the voiceless .

JEFF BUSHNELL MPN NETWORK MANAGER

Patient advocacy to me means learning as much as you can about the disease you are involved with so you can speak up with knowledge and confidence to your healthcare professionals .

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BE EMPOWERED

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HOW CAN YOU OVERCOME HURDLES IN YOUR HEALTHCARE JOURNEY?

Honora Miller : Hi , I ' m Honora Mi l ler , 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 al l the information that I wanted , and it took me a whi le . 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 enrol lment 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 .

VIEW FULL TRANSCRIPT

PEN - POWERED ACTIVITY GUIDE | PAGE 15

IS THERE VALUE IN SEEKING A SECOND OPINION?

Barry Marcus : I sought out a second opinion right after my initial diagnosis , I knew very l ittle 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 l ittle 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 feel ings or thinking that maybe he wouldn ' t l ike 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 al l , and it ' s real ly something that I need to do to feel l ike I ' m getting the best course of treatment .

VIEW FULL TRANSCRIPT

PEN - POWERED ACTIVITY GUIDE | PAGE 16

FINANCIAL CORNER: HEALTH CARE COVERAGE SPECIAL ENROLLMENT Diahanna Val lentine , BCPA , Financial Network Manager In 2002 Diahanna and her husband received the news that her husband had MGUS , a precursor to Multiple Myeloma . Upon her husband ' s death in 2013, Diahanna immediately decided to make it her mission to help patients and caregivers empower themselves to speak up and to position themselves as partners in their treatment . Diahanna became a Board - Certified Patient Advocate . She is currently the Financial Myeloma Coach for The Myeloma Crowd Foundation .

One of the first things President Biden accompl ished since taking office was signing executive orders that wi l l begin to restore and strengthen Americans ’ access to affordable and qual ity health care . Let ’ s review what he has done and what that can mean for you , your fami ly , and / or your friends . Whi le you read this article , think of other people who you think could benefit and let them know . Just because most of you understand the need for qual ity insurance as a result of your cancer , others may not need it now but what if something happens in the future and they don ’ t have it ? No one expects cancer to happen to them , it happens to other people , Right ? The first executive order President Biden signed in regards to health care was to reopen the enrol lment period for the Health Insurance Marketplace ( healthcare . gov ). Many states that operate their own websites to enrol l residents in the healthcare exchange have fol lowed suit . This special enrol lment lasts from February 15 th through May 15 th , 2021. After a horrible year of the pandemic and the needs that have arisen as a result , this should be a huge step in bringing affordable healthcare to those who have lost their jobs and find themselves uninsured . The process is very simple and can be done via phone or onl ine . And for those who have an i l lness , this is very comforting because the previous threat to l imit access to qual ity and affordable care because of a preexisting condition is no longer on the table .

In addition , President Biden is directing federal agencies to reconsider rules and other pol icies that currently l imit Americans ’ access to health care as wel l as consider rules and actions that wi l l protect and strengthen that access .

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Agencies wi l l be di rected to review :

Pol icies that undermine protections for people with pre - existing conditions , including compl ications related to COVID -19; ( Critical since some of these compl ications can be long - term or l ifelong ). Demonstrations and waivers under Medicaid and the ACA that may reduce coverage or undermine the programs , including work requirements ; Pol icies that undermine the Health Insurance Marketplace or other markets that sel l health insurance ;

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Pol icies that make it more difficult to enrol l in Medicaid and the Affordable Health care Act ; and

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Pol icies that reduce the affordabi l ity of coverage or financial assistance , including for dependents . This is important because many people think of chi ldren and col lege - age adults only as dependents but this could be an adult chi ld that is permanently disabled that you take care of .

These timely steps could provide additional coverage for mi l l ions of uninsured Americans . Some of whom may qual ify for free or subsidized health insurance .

As a cancer patient , you real ize the cost of healthcare . Having qual ity care and affordable care can be what al lows you to be proactive in your healthcare with your healthcare team to stay on your treatment plan as wel l as to mitigate and prevent financial toxicity . Whi le thinking about these opportunities , don ’ t forget to consider your current insurance plan if you are enrol led in a Medicare Supplement , Medicare Advantage , or employer plan . Review with your healthcare providers to find out if your treatment may change . Then inquire if the costs are going to change as a result of medication changes or treatment faci l ities ? Or perhaps you anticipate retiring before Medicare age or going on disabi l ity . Perhaps you are already on disabi l ity and wi l l be completing the 2- year mark and can go on Medicare . Now is the time to review your options before the enrol lment period expires .

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Make sure you have the best possible insurance for your needs that you can afford . Don ' t let an opportunity pass you by without investigating its benefits . Take a step to strengthen your health insurance program and possibly l ighten your financial load .

Additional information can be found at :

FACT SHEET : President Biden to sign Executive Orders Strengthening Americans ’ Access to Qual ity Affordable Health Care Healthcare . gov medicare . gov Patient Empowerment Network

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LIVING WITH A CANCER DIAGNOSIS AMID THE PANDEMIC

Barry Marcus : I have real ly never hesitated from tel l ing 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 l ike I haven ' t real ly 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 wi l l continue to wear a mask , always when I go outside even

though I ' m now vaccinated .

VIEW FULL TRANSCRIPT

PEN - POWERED ACTIVITY GUIDE | PAGE 20

A NEW “NEW NORMAL”: COVID-19 VACCINE GUIDELINES AND CANCER PATIENTS

Carly Flumer , Thyroid Cancer Network Manager

WHAT ARE THE CURRENT VACCINES ? WHAT AGE GROUPS ARE ELIGIBLE TO RECEIVE THEM ? As we enter a second year of l iving l iving in a pandemic , there have been a lot of changes in a world that has seemed stagnant , void of time . The inadequacies in healthcare that have been hiding behind the transparent curtain are now front and center , including health disparities , as wel l as access to and qual ity of care . We have also witnessed an influx of information about COVID -19 and the vaccine , and as cancer patients , it makes everything that much more compl icated . Lucki ly , there are trusted resources we can turn to for guidance on our most pressing questions :

Moderna : Ages ≥ 18 years Pfizer - BioNTech : Ages ≥ 16 years Janssen ( Johnson & Johnson ): Ages ≥ 18 years

HOW MANY DOSES OF EACH VACCINE ARE GIVEN AND HOW FAR APART ?

Moderna : 2 shots , 28 days apart Pfizer - BioNTech : 2 shots , 21 days apart Janssen ( Johnson & Johnson ): 1 shot

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Severe al lergic reaction after a previous dose of an mRNA or viral vector COVID -19 vaccine or any of its components Immediate al lergic reaction of any severity to a previous dose of an mRNA COVID -19 vaccine ( both Moderna and Pfizer - BioNTech ) or any of its components Immediate al lergic reaction of any severity to polysorbate Immediate al lergic reaction of any severity to any ingredient in the Janssen ( Johnson & Johnson ) vaccine such as polysorbate IF I AM NOT CURRENTLY UNDERGOING TREATMENT AND STILL HAVE CANCER , CAN I GET THE VACCINE ? Yes , as long as components of that vaccine are not contraindicated . See contraindications above . IF I AM CURRENTLY UNDERGOING TREATMENT , CAN I GET THE VACCINE ? Yes , as long as components of that vaccine are not contraindicated . Contraindications include :

IF I NO LONGER HAVE CANCER , SHOULD I GET THE VACCINE ? Yes , as long as components of that vaccine are not contraindicated . See contraindications above .

DOES IT DEPEND ON WHEN I GET THE VACCINE BASED ON WHAT TYPE OF CANCER I HAVE / HAD ? Yes , for guidel ines on specific cancers , visit this l ink .

SHOULD MY CAREGIVER AND / OR PEOPLE WHOM I LIVE WITH ALSO RECEIVE THE VACCINE ? Yes , when the option becomes avai lable to them . IF I PREVIOUSLY HAD COVID -19 ( TESTED POSITIVE ), CAN I GET THE VACCINE ? Vaccination should be offered to persons regardless of history of prior symptomatic or asymptomatic COVID -19 infection .

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Are ful ly vaccinated ( i . e ., ≥ 2 weeks after receiving the second dose in a 2- dose series , or ≥ 2 weeks after receiving one dose of a single - dose vaccine ) AND Are within 3 months after receiving the last dose in the series AND Have remained asymptomatic ( without symptoms ) since the current COVID - 19 exposure AM I FULLY PROTECTED AFTER RECEIVING THE VACCINE ? At this time , researchers are unsure of how much protection the vaccine provides . Therefore , it is sti l l recommended to wear a mask , wash yours hands for at least 20 seconds , and practice social distancing . However , vaccinated patients who are exposed to someone with suspected or confirmed COVID -19 aren ’ t required to quarantine if they :

WHAT ARE COMMON SIDE EFFECTS OF THE VACCINE AND HOW LONG DO THEY LAST ? Side effects can include :

Pain and swel l ing on the arm where you received the shot Fever , chi l ls , fatigue , and headaches

Most post - vaccination symptoms are mi ld to moderate in severity , occur within the first three days of vaccination , and resolve within 1–3 days

Of course this l ist is non - exhaustive , and there are a lot more questions to be asked and more answers to be found as frontl ine workers continue to study the virus and its variants . For the latest updates , fol low the Centers for Disease Control and Prevention ( CDC ) website , as wel l as American Society of Cl inical Oncology ( ASCO ) and the National Comprehensive Cancer Network ( NCCN ). We ’ re in this together , one day at a time .

SOURCES

https :// www . ama - assn . org / system / fi les /2020-12/ covid -19- vaccine - patient - faqs . pdf https :// www . cdc . gov / vaccines / covid -19/ info - by - product / cl inical - considerations . html https :// www . cdc . gov / coronavirus /2019- ncov / vaccines / expect / after . html https :// www . oncl ive . com / view / nccn - releases - covid -19- vaccination - guidance - for - patients - with - cancer

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EATING WELL

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HIDDEN GARLIC BROCCOLI AND BEEF

INGREDIENTS

1 1/4 lbs flank steak sl iced thin 1 tbs vegetable oi l 2 cups broccol i florets 2 tbs minced fresh ginger 1/4 cup oyster sauce

1/4 cup beef broth or water 1 TBS brown sugar 2 tsp toasted sesame oi l 1 tsp cornstarch Sal t and pepper to taste

DIRECTIONS

Heat a large pan over medium heat . Add oi l and once it is hot , add the broccol i and cook unti l soft ( about 4 minutes ). In a separate bowl , mix together oyster sauce with water or beef broth . Once combined , add brown sugar , sesame oi l , and cornstarch . Set the sauce aside . Add sl iced beef and prepared sauce to pan and mix . Salt and pepper to taste Add ginger and garl ic to pan and mix . Cover and cook medium low heat unti l beef is cooked through . To serve , sprinkle with sesame seeds and green onions .

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2. 3.

4. 5. 6. 7.

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ZESTY LEMON

BRUSSELS SPROUTS

INGREDIENTS

1 tbs ol ive oi l Salt and pepper Juice of 2 lemons 1/4 cup shaved Parmesan cheese

2 to 3 cloves of garl ic ( minced or pressed ) 1 tbs fresh thyme leaves 1 tbs fresh chopped parsley leaves Pinch of red pepper flakes

DIRECTIONS

Preheat oven to 400° F . Toss Brussels sprouts in ol ive oi l & sprinkle salt and pepper . Transfer to a parchment l ined baking sheet . Place cut side facing down . Bake for 30 minutes . Toss half way through . Serve warm spritzed with more lemon juice and top with parmesan cheese . 1. 2. 3. 4. 5. 6.

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POWER- PACKED PUMPKIN HUMMUS

INGREDIENTS

1 cup pumpkin purée 1 (15- oz .) can chickpeas , drained and rinsed 1/2 cup tahini 1/4 cup apple cider vinegar 2 tbs extra - virgin ol ive oi l 1 chipotle pepper in adobo sauce

1/2 tsp ground cinnamon , plus more for garnish 1/2 tsp paprika , plus more for garnish Kosher salt 1 tsp sesame seeds , for garnish Pita chips , for serving

DIRECTIONS

Combine al l ingredients in the bowl of a food processor or high - speed blender . Process or blend unti l smooth . Sprinkle sesame seeds , paprika , and ground cinnamon over the top and serve with pita chips . 1. 2. 3.

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SPICY SAUSAGE, KALE, AND GOAT CHEESE PIZZA

INGREDIENTS

1 lb pizza dough 4 tsp extra virgin ol ive oi l , plus more for drizzl ing 2 large leaves Tuscan kale , ribs removed , leaves torn into 1- inch pieces 1 clove minced garl ic 2 tbs chicken broth Kosher salt 2 l inks spicy sausage , casings removed 1 ripe tomato , seeded and coarsely chopped 5 fresh basi l leaves 2 tbs crumbled goat cheese

DIRECTIONS

Prepare pizza crust : Shape dough into large rectangle . Heat 1 tsp oi l in ski l let . Add kale and cook unti l beginning to wi lt , 2 minutes . Add garl ic and cook , stirring , 1 min . Add broth and cook unti l l iquid has evaporated . Season with salt and transfer to bowl . Add 1 tsp oi l to ski l let and heat . Add sausage and cook through ; set aside . In food processor , pulse tomato , basi l , remaining 2 teaspoon oi l and pinch salt unti l combined but sti l l sl ightly chunky . Spread tomato sauce over crust and top with kale , sausage , and goat cheese . Bake unti l goat cheese starts to brown and kale begins to char , 8 to 12 minutes . 1. 2. 3. 4. 5.

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GREEN MONSTER FRITTATA BITES

Best - sel l ing cookbook author and chef Ryan Scott is a juveni le colorectal cancer survivor whose father and grandfather also battled cancer . Ryan won an Emmy Award for his TV show Food Rush and was on Top Chef in 2007. Watch as he shares some of his cancer story as he demonstrates a healthy frittata recipe along with helpful cooking tips .

INGREDIENTS

¼ tsp salt 3-4 large fresh basi l leaves ½ tsp chopped fresh rosemary leaves ½ cup loosely packed fresh parsley leaves 1 tbs chopped fresh chives 2 tbs vegetable oi l 1 cup shredded Swiss cheese

1 cup shredded russet potato ( frozen or fresh ) 2 tbs butter ½ cup diced onion 1 clove garl ic , minced 3 large handfuls finely chopped

Swiss chard 7 large eggs ¾ cup plain Greek yogurt 1 tbs flaxseed

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RELAX AND HAVE FUN

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MAKE THE MOST OF LIFE

MPN Network Manager , Summer , who l ives with myelofibrosis and her care partner Jeff discuss the importance of not putting your l ife 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 l ife despite any chal lenges that may present themselves .

"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."

PEN - POWERED ACTIVITY GUIDE | PAGE 31

PEN BOOK CLUB

Suleika Jaouad

Reviewed by Robin Barnes

A stirring and admirably honest memoir of a young rare leukemia survivor , Suleika Jaouad ’ s story is one of grit , l iving boldly in the face of uncertainty , and the ways both love and heartbreak shape our path to empowerment . Whether you are l iving with cancer , learning to find a ‘ new normal ’ as a survivor , or know someone who is , the marvelous storytel l ing of “ Between Two Kingdoms ” wi l l shake up your inner kaleidoscope , giving you a new lens with which to view our remarkable shared existence .

PEN - POWERED ACTIVITY GUIDE | PAGE 32

WORD SEARCH

Play this puzzle at https :// thewordsearch . com / puzzle /289/ types - of - food /

PEN - POWERED ACTIVITY GUIDE | PAGE 33

Play this puzzle at https :// thewordsearch . com / puzzle /416/ ice - cream - flavors /

PEN - POWERED ACTIVITY GUIDE | PAGE 34

BE EMPOWERED! PLAYLISTS

MUSIC

A l ist of the 35 most inspirational and motivational songs to help you feel empowered and give you that much - needed boost to your day .

LISTEN NOW

Cancer Out Loud : The Cancer Care Podcast Beyond Cancer This Is Not What I Ordered : Giving Yourself Grace with Dr . Monica Bl ied ( Ep 59) Freakonomics : How to FIx the Incentives in Cancer Research ( Ep . 449) Thanks , Cancer : Chemo Brain After Cancer Empowered ! PODCASTS

PEN - POWERED ACTIVITY GUIDE | PAGE 35

SPOTLIGHTING ADVOCACY ORGANIZATIONS

Below is a l ist of oncology patient advocacy groups that offer support and resources for cancer patients and their fami l ies . This l ist is meant to serve as a guide and is not al l inclusive .

Association of Community Cancer Centers

CanCare

Cancer Hope Network

Diverse Health Hub

Health Content Col lective

Latinas Contra Cancer Center

Lazarex Cancer Foundation

Scottish Cancer Prevention Network

Stupid Cancer

The Patient Story

PEN - POWERED ACTIVITY GUIDE | PAGE 36

STAY CONNECTED

RECEIVE SUPPORT

By texting the word EMPOWER to +1-833-213-6657, you can received personal ized support from our Network Managers . Whether you ’ re a cancer patient , or caring for someone who is , PEN ’ s Network Managers wi l l be here for you at every step of your journey .

STAY INFORMED

In the fight against cancer , knowledge is your super power . But , where do you begin ? Sign up to receive our newsletters to be the first to hear about our newest blogs and videos .

BUILD COMMUNITY

The Empowered Patient Chat Facebook group is a community of patients , care partners , and healthcare professionals . Join today for a safe space to have meaningful dialogue with others l ike you .

PEN - POWERED ACTIVITY GUIDE | PAGE 37

3 WAYS YOU CAN EMPOWER OTHERS

SHARE WITH YOUR NETWORKS

PEN - Powered Activity Guides

DONATE TO SUPPORT PEN ’ S PROGRAMS which are improving treatment outcomes and health equity for cancer patients .

Donate Today

INTRODUCE SOMEONE IN NEED OF SUPPORT TO PEN NETWORK MANAGERS

Network Managers

PEN - POWERED ACTIVITY GUIDE | PAGE 38

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