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 life, and there wasn’t anything I could do about it.

It wasn’t until I ended my treatment, when I declared myself a survivor, that I realized I was completely wrong. I recognized there were choices I could have made regarding my treatment plan and there were still 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 full-time, and I was in graduate school. I dreamt of being published 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 like 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 personalized care available.” 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 pilot this program as the Thyroid Cancer Network Manager, and my content would be read and shared by others.

The PEN Network Manager program officially 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 amplifying the needs of specific health communities via guidance of an established 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 resilience, health literacy, telehealth, and what it’s like to be an adolescent and young adult (AYA) with cancer. It has been my greatest privilege 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 https://powerfulpatients.org/about/#networkmanagers. Clicking on each person’s picture will bring you to their bio as well as content they have created, including recipe guides, interviews, comedy sketches, infographics, and more. Note also that each manager has a personal PEN email 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.

Joining PEN’s network of cancer managers has truly been inspiring. Although we’re all across the world, conversing with them via email 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 all cancers. For more information on how you can get involved, please contact Nykema, PEN’s Network Manager Coordinator, at kema@powerfulpatients.org.


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 listening and providing solutions to empower caregivers to improve their resilience. – Sherea


 

Communicating About Cancer: A Brief Guide to Telling People Who Care

Getting a cancer diagnosis can easily be the most terrifying, heart-wrenching experiences one has in their lifetime. Everything from different treatment options (if you’re lucky), to financing, and maintaining quality of life suddenly are in full force front and center. It can be hard to know who to turn to if you’re not directed to a support group (of which there are many), and especially how to tell loved ones and co-workers. The choice is yours, of course, in whom you wish to tell and when – there is no right or wrong answer. (However, I and many others have found that having a caregiver to help manage appointments, billing, etc. can help).

Should you choose to tell others, here are some tips that I have read and/or heard from other cancer patients/survivors as well as some I have found personally helpful:

Kids:

  • It depends on the age – using simpler terms with younger kids (8 and under) may be more helpful, while older kids and teens can understand more detail. For example, saying that you’re sick and you’re getting the best care from a team of doctors who really want to help you get better
  • According to the American Cancer Society, children need to know the basics, including:
    • The name of the cancer
    • The specific body part(s) of where it is
    • How it’ll be treated
    • How their own lives will be affected
  • Think of a list of questions ahead of time that you think they may ask and jot down answers, such as how the cancer happened (that it’s not anyone’s fault), if it’s contagious, and/or if it’ll be fatal
  • Make sure that they know you are open to talking about it at any time. You can also perform check-ins with each other to monitor feelings

Family and friends:

  • Select a group of people, including immediate family and close friends
  • Divulge information only you feel comfortable sharing. Maybe it’s the basics, as mentioned above, or more detailed information
  • Prepare for different reactions, including sadness, anger, frustration, depression, anxiety, compassion, and support
  • Also prepare for people to not feel comfortable and feel as if they’re helpless. A cancer diagnosis is a heavy weight to bear, and not everyone will feel like the have the capacity to help as much as they want to
  • As the patient, tell them how you’re looking for support (ex. what are your needs during this time, including physical, emotional, mental). Guiding members of your support system to get your needs met may help them feel more at ease and able to help

Work:

  • Telling a supervisor/manager may be one of the hardest tasks for fear of discrimination
    • However, the Americans with Disabilities Act (ADA), which covers employers with 15 ore more employees, prohibits discrimination based on:
      • Actual disability
      • A perceived history of disability
      • A misperception of current disability
      • History of disability
    • The ADA also:
      • Protects eligible cancer survivors from discrimination in the workplace
      • Requires eligible employers to make “reasonable accommodations” to allow employees to function properly on the job
      • Ensure that employers must treat all employees equally
    • The Family and Medical Leave Act (FMLA) also gives you the right to take time off due to illness without losing your job
      • However, an employee must have worked for his or her employer for at least 12 months, including at least 1,250 hours during the most recent 12 months in order to qualify. The law applies to workers at all government agencies and schools nationwide as well as those at private companies with 50 or more employees within a 75-mile radius
    • The Federal Rehabilitation Act prohibits employers from discriminating against employees because they have cancer
      • However, this act applies only to employees of the federal government, as well as private and public employers who receive public funds

Sources:

Reaching the Peak: Finding Resilience During Cancer

What does it mean to be “resilient” as a cancer survivor? Does it mean having the courage to remain positive? The strength to carry yourself into the next chapter of this “new normal” life?

In my opinion, having resilience or being resilient means all those things and more. However, resilience can also be built upon a collaborative effort made by both the patient and their healthcare team.

In the recent 2020 symposium held by the National Coalition for Cancer Survivorship, results were presented from a survey that stated patients believe that being proactive in the beginning of treatment can lead to better health outcomes. Part of being proactive on the patient side is asking questions of your care about diagnosis and prognosis, treatment options, physical/mental/emotional side effects, and short-term and long-term effects on quality of life. During the treatment process being proactive can also consist of contacting your care team with questions rather than guessing what “should be” happening, instructions on how to take medications, and any unexplained side effects.

Managing these side effects can also count as resilience. For example, speaking with a social worker or seeing a therapist may help with the emotional trauma of a diagnosis. Moving your body and getting your blood flowing by walking, running, yoga, and other forms of exercise can show mental and physical resilience. Most importantly, asking for help when you need it and being specific in what you need can show determination.

At the end of treatment, the journey is not over. Rather, it can feel like it’s just beginning. As you look back on how far you’ve come, contemplate if there’s anything you would’ve done differently. Maybe you were fearful, and now you’re more curious. Maybe you were afraid to share your story and what people would think of you. Now you know that none of that matters, except what you think, what you feel. Your story is powerful, your feelings are valid, and you have the courage to push forward.

Resilience isn’t something to be won; it’s something to be explored. Just like a diagnosis, it doesn’t come easy. But take a moment, breathe, and know that there are people rooting for you. Keep going.

Cancer: The Scariest Ride of Them All

June is home to National Cancer Survivors Day (June 7th), a day to celebrate the journey of survivors, who are defined as “patients diagnosed with cancer.” While there are multiple resources for cancers patients, including an entire website dedicated to the National day, I thought that I would share my perspective of what it means to be a patient/survivor on an emotional/mental level:

Emotional/Mental

  • Sadness and in denial when diagnosed
  • Angry that this is happening to you specifically
  • Hopeless because of a lack of control
  • Frustration when you don’t understand your treatment plan
  • Guilt knowing other cancer patients have it worse
  • Anxiety when preparing for a scan or an appointment
  • Betrayal when you find out who your true friends and family are
  • Hope knowing you may make it out on the other side
  • Strong when you make it through the next chemo and/or radiation treatment
  • Resilient when you’re declared “in remission
  • Fear that the cancer may come back

This is only a glimpse into the many feelings felt, the life that is suddenly a roller coaster with ups and downs and hidden twists and turns. Sometimes you may not hear the whole story, the emotions guarded underneath a face that tries to “be strong” through it all. Really take a listen when you, as a caregiver, a medical professional, a friend, or a family member, ask a cancer patient, “How are you feeling?” Look at the facial expressions, the body language, and the words they’re using. To summarize: Be present.

Health Exercises to Tap Into Your Resiliency

The current pandemic the world is facing has caused a whirlwind of emotions, especially for immunocompromised patients, including cancer patients. Every feeling, from grief to sadness, and anger to hopelessness, has been magnified as our minds take a toll and our level of vulnerability has grown.

Right now, we are doing the best we can with the knowledge, experiences, and tools that we have. A couple of ways to utilize these tools and stay grounded during this time include meditation and exercise. Below are a list of resources, including ones I have personally used, that can be utilized to build inner and outer strength.

Walking

A great form of exercise that can be done anywhere and doesn’t require any equipment. During your walks, take in the scenery around you. Challenge yourself by quickening your pace, going up and down hills, or see how far you can go in a specific amount of time.

Yoga

Another activity that requires little to no equipment. Find free videos on YouTube or look to see if a local studio is offering online classes. Yoga allows your mind to calm and your stress hormone levels to reduce as you focus on slower movements and breath work.

Aerobics or high-intensity interval training (HIIT)

Helps improve cardiovascular health and endurance through quick movements done in rounds and can utilize the entire body. YouTube and Instagram are great places to look for these types of exercises. You can also incorporate weights (if you have them) to make it more challenging.

Strength training or weight lifting

Beneficial for both men and women, and burns more calories over time. You don’t have to be buff to lift weights or even have equipment. Buckets filled with heavy items or other things with handles, soup cans, bags of flour, a dish towel, or even body weight can be used to break a sweat. Again, YouTube and Instagram are your places for videos. Pinterest can also be helpful by searching for “body weight exercises,” or “exercises with no equipment.”

  • Mastering the form of each exercise is crucial to avoid injuries. Form > the amount of weight you can lift.
  • Do each exercise slowly. Form a mind-muscle connection.
  • Don’t forget to breathe!
  • Stretch!
  • Favorite exercises:
    • Bicep curls
    • Tricep dips
    • Bent over rows (back)
    • Rear delt flys (deltoids)
    • Upright rows (shoulders/trapezoids)
    • Squats
    • Deadlifts: Romanian, sumo, one-leg, stiff-leg (hamstrings)
    • Calf raises
    • Military press (shoulders)
    • Chest press

Meditation

Meditation is a wonderful practice that can be used to mitigate negative thoughts and distractions. This is important any time, not just during quarantine! One of the best things about meditation: you don’t have to be perfect! Meditation takes dedication and practice. YouTube has free, guided meditations that can be done in any quiet space. Some have someone spreading, while others are simply music. Apps, such as Headspace and Calm, also offer guided meditations.

How to Make the Most of a Virtual Visit

“Well, we need to check your titer,” the doctor explained as he went over my lab results via a recent Zoom call. “Titer?” I thought. I know I’ve heard that term before, but I wasn’t really sure what it meant. The doctor reappeared the word a few more times, exacerbating my confusion. I was too embarrassed to ask what he meant; he was talking quickly. When he eventually said, “The titer is the strength of the antibodies in your blood,” I finally understood and felt more at ease.

As we face this pandemic, chronic and/or rare disease patients like myself are facing an extension of the “new normal” that everyone is experiencing firsthand. Our doctor’s appointments are critical times when we’re able to explain how we’re feeling, how our medication may or may not be working, and what the next steps are. But our visits become different when our face to face sessions turn virtual. I believe we become more vulnerable, as we invite the doctors into our home lives.

While healthcare has certainly come a long way and telemedicine has been on the horizon, virtual visits are now the norm. We have been placed, both as patient and healthcare professionals, in a position that allows us to take advantage of the technology we have and still provide and receive great care. In my opinion, these visits should not be considered a hassle, but rather an encounter that continues to focus on patient education as we face unprecedented times.

A part of patient education is health literacy. Health literacy can be defined in many ways, but the short, paraphrased version is that health literacy is the ability of patients to understand health information (verbal, visual, etc.) in order to make the best decisions about their health. This includes understanding the messages that are being conveyed to them by health professionals, including symptoms to look for and how to take medication. The case remains the same whether visits are in-person or virtual, perhaps with greater emphasis on the latter, in my opinion.

Below, I will highlight things that patients can do to make the most of their health appointment, with a focus on health literacy.

Tips for Patients

  1. Discuss any information you have questions about during your appointment, especially if it has jargon you don’t understand
  2. If a doctor speaks too quickly, tell them to slow down or repeat what they said
  3. Take notes during your appointment if having something visual helps you remember
  4. If your doctor mentions a word you’ve never heard of, ask them to define it
  5. Share your understanding of how a certain medication or treatment is helping you and/or if you think something could work better
  6. If you’re unsure of how to take a medication, show the label to your doctor to have them explain
  7. If you are provided with test results, ask your doctor to review them carefully with clear language

Tips for Patients on Staying Connected Despite Physical Distancing

We are in a crazy time right now, and no one has experienced anything like it…except for cancer patients. As high-risk patients, we know what it’s like to distance ourselves from others and practice good hygiene. I know I do.

As a thyroid cancer patient, I underwent radioactive iodine treatment, where I became radioactive. I was living with my family at the time, and I had to have my own room and bathroom. No family member could come within a certain distance from me. Not even my dog. I remember them leaving meals outside my door, and texting a parent or sibling when I needed something. It was strange, yes, but I knew it was what I had to do to keep myself and my family safe.

The same thing is happening right now. We’re told to stay at least 6 feet apart from people at all times. Performing normal tasks such as going to the grocery store, a friend’s house, and even work are no longer possible. It creates a sense of grief in all of us, as we feel lost without our normalcy. Instead, we are living a “new normal,” something that cancer patients have already been long accustomed to. It’s as if the rest of the world gets to see how we live, how we feel.

We may have to physically distance ourselves, but staying connected is still possible. And it is in these moments that we can learn how to cultivate strong relationships. We live in a world with an abundance of technology. We have the ability to call, text, email, video chat, Tweet, etc. Had this pandemic happened a long time ago, none of this would’ve been possible. Social distancing would be real.

To take advantage of the opportunities that are currently presented to us, I’d like to highlight the ways in which we can stay connected:

(NEW!) Virtual Empowered #PatientChat | Friday, May 15 @ 1PM EDT

The Virtual Empowered #PatientChat is a moderated conversation conducted online via Zoom and Facebook Live. This support group will feature an expert moderator, a panel of passionate patient advocates and care partners, and other people seeking a consistent friendly community. Learn more and register!

 Support groups via Zoom

  • Our Odyssey
  • Smith Center – for AYA patients (located in the Washington, D.C. area but is open to patients all over)
  • Look for ones from specific cancer orgs (ex. Thyca, Inc.)

Facebook support groups

These can be found for cancers from the general (ex. breast cancer) to the specific (ex. breast cancer with BRCA1 mutation)

Tweet chats

Search for these using the hashtag as seen below. A few of my favorites include:

  • #patientchat
  • #ThyCaTalk
  • #bcsm
  • #HealtheVoicesChat
  • #medtwitter
  • #HCLDR

The Value of Patient Communities

When I was diagnosed with cancer, I thought “This is all on me. I’m going to get through this on my own.” I didn’t want to burden anyone with my new “problem.” I had my family, of course, but even then, I didn’t wear them down with upcoming medical bills. In my mind cancer equaled a solo journey.

It wasn’t until late into my journey as a cancer patient that I found that I needed others. I needed a community of people like me who were going through the same thing I was. A group of people that I could call a “second family.” Searching for “thyroid cancer groups” on Google led me to Thyca, Inc., an organization specifically for thyroid cancer patients. They offer face-to-face support groups in my area, which I still try to attend.  In these groups, we’re able to freely share what we’re going through as a cancer patient and provide support to one another. Additionally, I found a group on Facebook that was specific for my type of thyroid cancer which provided even greater benefit, as we know that all cancers are different. In this group, we also share our experiences, but in a virtual format. In this way, more patients are able to come together to create a larger network of people with whom to connect and learn from.

Finding these online and in-person support groups provided me an outlet for which I could share my ups and downs and often find them reciprocated. Additionally, I learned information about what to look for in and how to communicate with an endocrinologist, a special type of physician for thyroid cancer patients. I learned about the different blood work levels to monitor in a language that made sense to me and not the scientific jargon I usually heard from my doctor. Most importantly, I found people who “get me.”

However, I was hesitant to share everything, even little bits and pieces of what I was going through and what I was feeling. Sharing data online can be scary, especially health data. That’s why it’s important to find websites and organizations that have confidentially and/or privacy policies in place and monitor people’s behavior. Look at what other patients are saying. How revealing are they being? Are they displaying appropriate behaviors (ex. helpful vs malicious)? If you feel uncomfortable, report it!

“Finding your tribe” is something I wish I had done earlier in my journey. I wish my doctors would’ve told me about support groups. As I’ve learned, a chronic illness is not something you go through alone, much less cancer. Having a group, whether it be large or small, face-to-face or virtual, can provide immense benefit for both emotional and mental health.If you’re struggling through your health journey alone and feel like you need someone to talk to or even provide a listening ear, find your community. Find “your” people. A simple Google search helped me, but there are a number of organizations to look out for. Here are some of my favorites I found as a cancer patient:

Inspire (chronic conditions, including cancers)

Our Odyssey (rare diseases, including cancers)

Facebook groups (general and specific to the type of cancer)

Twitter (find groups using hashtags)

American Cancer Society (search for support groups)

Stupid Cancer (virtual and in-person support groups)

Cancer Support Community (all cancers)

Cancerfighter.com (all cancers)

Don’t miss the Best Practices for Participating in a Patient Community Empowered #patientchat Friday 4/3 at 1pm ET | 10am PT with Carly!

Thyroid Cancer Network Manager

The drip-drip-dripping of the sink in the radiology room echoed loudly in my brain as I waited for the pathologist. I just had a biopsy done for two spots on my neck—one suspected to be cancerous. “A nodule,” my primary care physician had previously explained at my annual physical. The radiologist had comforted me, casually saying, “I wouldn’t worry, though. There’s only a ten to fifteen percent chance.”

In just a few minutes, I would be given my fate.

In January 2017, I was diagnosed with thyroid cancer. I met my surgeon five months later. “What you have is called a papillarycarcinoma,” he said. “Doesn’t cancer come from tumors?” I thought. I looked up some terms in the National Cancer Institute’s Dictionary of Cancer

  • Nodule – A growth or lump that may be malignant (cancer) or benign (not cancer)
  • Carcinoma – cancer that begins in the skin or in tissues that line or cover internal organs
  • Tumor – an abnormal mass of tissue that results when cells divide more than they should or do not die when they should. Tumors may be benign (not cancer) or malignant (cancer). Also called neoplasm.

The dictionary helped, but why weren’t these words explained to me by the doctors? It sounded like all the terms were being used interchangeably, and my brain was already feeling corrupted by the diagnosis—I was struggling to comprehend my diagnosis.

My bewilderment grew as I tried to understand how the thyroid hormones, T3 and T4, worked together with thyroglobulin (a biomarker), and the pituitary gland located in the brain. I understood what hypothyroidism vs. hyperthyroidism meant, but only because I knew the symptoms of each, and would be able to tell my doctor if I was experiencing any of them.

I was told by multiple doctors that I had the “good” type of cancer, and I felt hopeless and quite stupid for asking them to repeat what they had just said, or for asking them to explain a term or biological process in a different way.

Coincidentally, I had just started my fourth month of graduate school in a program focused on health communication—one of my first classes was writing for health communicators. That’s where I learned that, as of 2003, when the U.S. Department of Education measured health literacy of various populations across the country

  • Only 53% had intermediate health literacy, or “having the skills necessary to perform moderately challenging activities.”
  • 12% had proficient health literacy, or “skills necessary to perform more complex and challenging literacy activities.”
  • Which means that more than 40% of the population is only able to understand the basics of their health.

It only gets worse for people living in poverty, the elderly, and racial minorities.

So how can we create health literacy equality among all populations?

The answer lies with patient advocacy and patient empowerment.

The doctor-patient relationship has changed significantly—for the better. Where once a patient relied on their doctor for information, to learn about a condition or a symptom, today, patients are finding this information online—and bringing their knowledge to appointments. They’re asking questions about their health and treatment paths. Some are even looking for answers about things that the doctor may not have heard of…yet!  

As a health care professional, are you:

  • Using terms that are patient-friendly or that are at grade level?
  • Using pictures or diagrams to simplify complex concepts?
  • Asking questions to make sure patients understand your instructions?
  • Explaining test results, documents, brochures, etc.?

Most importantly, are you taking the time to listen to the patient’s concerns, and addressing them in a clear, understandable manner?

When doctors and health care providers take time to engage with them, patients feel more empowered to take charge of their health, and to become their own advocates. When the fearful become fearless is when real change happens.

Putting the Human Back in Healthcare

I recently listened to one of my favorite podcasts, “What Should I Read Next.” The premise of the podcast is the host, Anne Bogel, chats with a guest about their reading life, including three books they love, one book they don’t, and what they’re currently reading. In a recent episode, she spoke with a physician who was about to retire. She said that she had been trying to read more books with different genres, as her main focus for the majority of her life and education had been science-based texts. She grew up in the library reading a variety of books and still tries to educate herself by going to lectures and author talks. However, she was looking for more books that focused on the humanities. HUMAN. Which got me thinking about my background in health communication and my passion for health literacy. I know that one of the many reasons that doctors go into the medical field is because they want to help people. They have a strong sense of empathy and the passion to care for others. However, throughout all of the scientific jargon that they retain and medical knowledge that they gain, they may lose the ability to connect one on one with the patient, to really understand what’s going on behind the aches and pains. Plus, office visits with patients are getting shorter. Doctors don’t have the time to really understand what is going on with the patient before they try and get them in and out to move on to the next. They feel rushed, and as a result, the patient can walk out not knowing what happened. According to the Agency for Health Care Research and Quality, a division of the U.S. Department of Health and Human Services, poor communication can have a detrimental effect on people’s health. For example, patients may not comply with doctors’ orders because of a lack of understanding. It can also hurt medical practices as patients have the option to leave doctors who they feel do not communicate well and therefore, a lack of trust develops.1

So how can we fix this? Can we emerge communication education into the medical curriculum, including required continuing medical education? Can we focus on the human connection that led these doctors to practice medicine in the first place?

Here are a few suggestions for physicians:

  • Pay attention to the patient though active listening. Repeat back to them what they’re saying to develop an understanding.
  • Use lay-friendly language. Patients come in because they feel sick, something is wrong. Being bogged down with medical jargon isn’t going to help.
  • Use the teach-back method. Have the patient repeat back what you told them.
  • Use pictures of graphics to explain complex concepts.
  • Talk to them about other aspects of their life. It’s not just an illness you’re treating, but a patient with a life outside of the doctor’s office.
  • Show that you have the time to listen even if time is short. Patients know when they’re being rushed.

What do you as a patient want from your doctor? What do you feel is lacking in the patient-physician relationship?


Sources:

  1. https://www.ahrq.gov/cahps/quality-improvement/improvement-guide/6-strategies-for-improving/communication/strategy6gtraining.html

Deceived But Not Defeated

I never felt any symptoms. I mean, I was tired, but what young 20-something who had just started graduate school while maintaining a full time job wouldn’t be? It happened during a physical. A lump towards the top of my throat was felt by my doctor. “I would go and have that scanned,” he said. I wasn’t worried; he had never mentioned cancer. So I went and had the ultrasound. “Well, we see what your doctor was talking about, and it appears to just be a cyst,” the doctor said, “but there’s another spot on the right side of your thyroid. You have two options. You can wait to see if the spot grows or we can perform a biopsy to see if it’s cancer,” he explained. “Now, the chance of it being cancer is anywhere between 10-15%, a very very low chance,” he reassured me. “I want the biopsy,” I said, not wanting to take any chances. The biopsy was performed, and within minutes, the doctor returned saying he had bad news. “Unfortunately, it’s cancer, but the good news is that it’s very treatable. I recommend you having surgery.” And that was it; although, it hadn’t hit me, at least not as hard as I thought it should had – at least not immediately. I went to my car, called my mom, and asked her if she was sitting down. I told her the news, still shocked by the ordeal I was just handed. In an instant, my life had changed forever. I heard those three words no one ever wants to hear, “You have cancer.”

I wasn’t sure how to proceed. How advanced is my cancer? What doctor(s) do I go to? How quickly do I need surgery? I just started school – do I need to drop-out already? What about my job. All of these thoughts raced through my mind. However, the support of my family and, luckily, not having any symptoms kept me going. I was working in a hospital at the time, and I spoke with a few of the doctors I worked with. “Oh, the good type of cancer. You’ll be just fine,” one said. “‘Good type?’” I thought. What is good about having cancer? He gave me the name of a surgeon who specialized in thyroidectomies. It was a five month wait to get in.

When I eventually saw my surgeon, he gave me two options. The first, he explained, was a partial thyroidectomy. “We’ll only remove the lobe of the thyroid where your tumor is. The benefit of that is that the other lobe will continue producing enough of the hormones that your body needs so you don’t have to take a medication for the rest of your life. The second was a total thyroidectomy, rendering me to that medication, literally, for a lifetime. I went with the former, and had a successful surgery. Of course, it didn’t end there.

Two days after my surgery, my doctor called. “We performed pathology on some of the lymph nodes that we removed from your neck, and unfortunately, almost all of them had cancer. What this means is that we need to have you come back and perform another surgery to remove the rest of your thyroid. Then after, you’ll have to undergo radioactive iodine to rid your body of any residual thyroid tissue.” My heart sunk. My world was crushed yet again. Another surgery? What was radioactive iodine? I didn’t how to process the emotions that I was feeling as tears streamed down my face. “It never ends,” I thought.

After my second surgery, I was thyroid-free. Later, I went through the radioactive iodine procedure where I had to be a specific diet for approximately 3 weeks. I could consume very little to no iodine, or salt, which was essentially in every product. As I went up and down the grocery store aisles reading every nutrition label, I found myself frustrated finding almost nothing that I could eat. Don’t get me wrong, this was a very healthy diet, as I was essentially restricted to meats (without seasonings), fruits, and vegetables. But it wasn’t my favorite. I went to a nuclear medicine center where I consumed a pill that would make me radioactive. I was to stay physically away from people for approximately one week, slowly decreasing the amount of feet I could be within others as each day passed. I then had a whole body scan that showed that the cancer hadn’t spread, or metastasized, to any other place in my body, but there was still some residual thyroid tissue that the radioactivity would hopefully kill.

The journey continued. I would need to be on a medication for the rest of my life. I would need to see a specialist, an endocrinologist, for the rest of my life. They would decide the dosage of my medication based on a variety of factors, including how I was feeling emotionally and physically. It wasn’t until after I had my thyroid removed that I realized how much it does for our bodies. “It will take some time before we find the right dosage for you,” my endocrinologist explained. In other words, sometimes I would be hyperthyroid, other times, hypothyroid. My symptoms may be all over the place, including my metabolism rate, my body temperature, and even my mood. As a patient with chronic depression and anxiety, I could only hope that the “right” dosage would be found quickly.

Fast forward two years later from my diagnosis, and I have been deemed “cancer free,” no more thyroid tissue. While I am incredibly thankful for this result, I can’t help but feel survivor’s guilt. I often think, “Why me? Why did I get to survive and others don’t? How did I get by so easily?” Despite this guilt, I have used my cancer diagnosis and journey to become stronger both mentally and emotionally. I have unashamedly shared images on social media and written stories that have been published in the hopes to inspire others and to be an advocate for those who don’t feel like they have a voice. Yet, I don’t pretend to know everything. I still have questions that remain unanswered. How likely is my cancer to come back? Why do I keep losing so much hair? Why am I always so tired? Despite having the “good” type of cancer, there is nothing that great about it. Although I never had symptoms, I still went through two surgeries and a radioactive iodine procedure, which had its own side effects.

As a result of what I went through and my never-ending passion for helping others, I believe that my diagnosis happened for a reason – to lead me to a career in patient advocacy. I have a background in health administration, policy, and communication. I have worked at doctor’s offices and hospitals. I feel I had an advantage in having the knowledge that I did/do, and access to physicians. However, I still get confused when I ask my doctor a question, and I receive an answer that’s in medical jargon. I think, “I can’t be the only one who feels lost, who feels confused.” Plus, I know that there are patients who are going through worse situations than I did. There has to be a way to mend the physician-patient relationship that is currently suffering. There’s not enough time dedicated to each patient, to hear what they’re going through each day. Physicians also need to make sure that what they’re saying/explaining makes sense to the patient, especially when it comes to taking medication(s) (patients with chronic conditions usually have multiple, which can be hard to keep track). There are solutions coming to the forefront, such as pill packs, patient portals, and support groups. But I believe this is just the beginning. Every cancer is different. No two patients are the same – indifference is ignorance. It’s time to combine research, health literacy, and ultimately, compassion for a patient’s story, to provide the best care and create better health outcomes.