PEN Blog Archives

#patientchat Highlights: Genome-Wide Sequencing: What an Empowered Patient Needs to Know

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Last week we hosted an Empowered #patientchat with GenCOUNSEL (@GenCOUNSEL_CA) titled “Genome-Wide Sequencing: What an Empowered Patient Needs to Know”. The #patientchat community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.

Top Tweets

“Genetic counselors help patients know what they’re dealing with.”

Genetic Counseling Helps Patients and Families Feel More Empowered

What can stakeholders do to make genome-wide sequencing and genetics services more equitable and diverse?

Full Transcript

The Benefits Of Working At Home If You’re Undergoing Cancer Treatment

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Around 1.8 million people were diagnosed with cancer in the US in 2019, and for those living with cancer, work can be an important part of their life. While providing much-needed financial security, including health benefits, it also offers routine, a sense of normality, and boosts self-esteem. However, for many people undergoing treatment or survivors wanting to return to work after cancer, the standard full-time, in-office nine-to-five job may not be the right fit anymore. Working at home can offer the best of both worlds. You can maintain your career but avoid the complications and rigid structure of being in the office.

Work Is Good For Your Health

It’s widely known that a steady job in safe working conditions is good for both our physical and mental health. There is growing evidence that job loss and unemployment can be detrimental to your health and linked to various negative health effects. That’s why it’s so important that employees are supported to enable them to remain at work or return as soon as possible where appropriate. While the cancer journey can feel like a lonely struggle to many people, maintaining a work pattern can help a person stay mentally active, strengthen their sense of purpose, provide structure, and provide real opportunities to achieve.

Benefits Of Working From Home

Working from home when undergoing treatment or in recovery can often help a person perform their job better than if they came into work. Working remotely can also make a big difference in helping their feelings of anxiety about managing any embarrassing side effects in private. Of course, it also means that they can avoid a long commute, and gives them the ability to work around periods of fatigue. There’s also an added advantage if they own a pet. Extensive research has found that pet therapy can have profound benefits for a person going through chemotherapy. Studies show that working alongside a pet can reduce feelings of loneliness and promote a sense of well-being. It can even help reduce the need for pain medications.

What You Need To Consider

Certain jobs cannot be easily carried out remotely, so you may have to consider whether there’s an alternative role available. Alternatively, your current position might be suitable to do from home, but it may need to be adapted to fit in with your current health and lifestyle. Speak to your employer about whether there’s any special equipment you need to work at home, and anything else that will allow you to work effectively. If you experience fatigue and memory loss due to your cancer or chemotherapy, you may not be able to perform your job to your usual standard and speed. It’s helpful to talk to your employer about how you are affected by your treatment, and what you believe you can reasonably achieve from home.

Many people who are undergoing cancer treatment or are in recovery are perfectly able to continue to carry out at least some aspects of their job. They can still be valuable assets to the business; they may just require extra support. Working from home can help someone living with cancer stay connected with their colleagues, feel less isolated, and provide a welcome sense of normality in a world that can suddenly seem unpredictable and frightening.

Patient Profile: Vanessa Steil

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“PEN builds community and empowers you to be your own advocate.” – Vanessa Steil, thyroid cancer survivor and patient advocate.

When Vanessa Steil recounts how she was first diagnosed with thyroid cancer, you can tell it is a story she has told many times. The dates, the terminology, and which doctor told her what and when are all precisely chronicled in her memory. Yet it took her reflecting on her story as a survivor to process just how crucial all of the details were. Now, she’s passionate and committed to helping others, and she has dedicated much of her time—and career— over the past eight years to doing just that.

It all started in March 2013 during a routine visit to the gynecologist. The doctor, who performed a neck check as part of the exam, felt a lump on the right side of Vanessa’s thyroid. “I was taken off guard by the whole thing,” she says. She tried to convince herself that the lump was nothing serious, but she followed the doctor’s advice for further testing, and a month later was diagnosed with papillary thyroid carcinoma: thyroid cancer. She was 26 years old. “My whole world changed with just three words. In an instant, I went from feeling like a normal person to having to absorb all this new medical jargon,” she says.

It was a difficult time for Vanessa. She was young, she didn’t know anyone else her age who had cancer, and she didn’t know anyone with thyroid cancer. While she had support from friends and family, at the end of the day she felt very much alone. As the weeks passed by and her mind raced on, she began to second-guess her diagnosis, question whether she should have surgery, and considered having another biopsy. “I had to work through the emotional aspects of my diagnosis, including coming to grips with the fact that I had thyroid cancer and the fear I felt about the outcome,” she explains. “You have to be in a positive place when you are going to have surgery.” Fortunately, her cancer was not overly aggressive, and she was able to delay the surgery until she felt more prepared.

By June 2013, she was ready for surgery and had a total thyroidectomy that included the removal of six lymph nodes, one of which was positive for cancer. The surgery was successful, and so far, she hasn’t required any radiation therapy, a common follow-up treatment post thyroid cancer. While in 2017 her antithyroglobulin levels, a marker that can be used to monitor a possible cancer recurrence in those with an autoimmune condition, went up and remained that way, she continues to be monitored. Her bloodwork and scans are done twice a year, and once a year she has a neck ultrasound; each time she experiences what survivors call “scanxiety” until she gets an all clear from the results.

When Vanessa was diagnosed, her endocrinologist gave her a key piece of advice that she didn’t completely understand at the time, but it stuck with her, and the meaning soon became clear. He told her, “Don’t turn this diagnosis into a research project.” As someone who is naturally curious and was eager to learn all she could about her disease, as soon as she was diagnosed, Vanessa took to “Dr. Google” looking for information and answers, but she wasn’t always finding helpful information. “While online, I was landing on horror stories,” she says, adding that while it is important to be knowledgeable about your disease, it is imperative to get accurate information and to be careful about choosing which sites or social media outlets to use as resources. “The Internet can be a scary rabbit hole, and it can cause unnecessary worry,” she says. “Finding a reputable site, like Patient Empowerment Network (PEN), that’s done a lot of the legwork for you and has comprehensive resources available is invaluable,” she says. Vanessa especially appreciates that PEN helps prepare patients for doctor visits by providing a list of questions to ask and offers relevant insight to caregivers, and survivors. “I was impressed with the PEN content, because it helps the patient from diagnosis to recovery,” she says. She also recommends sites that offer a sense of community where you can interact with other patients who have had similar experiences. “PEN builds community and empowers you to be your own advocate,” she says. “You have to know your body and speak up for yourself. That’s where the community aspect comes in. As a survivor, I try to provide that sense of community for others.”

After her surgery, Vanessa found a creative outlet that allows her to provide support for others and helped her through her own recovery. She created a lifestyle and wellness blog, Living in Steil (pronounced style), where she shares her personal journey and favorite resources as well as beauty, food, fitness, and health and wellness information. She says she was inspired to start the blog in February 2014, while recovering from surgery and trying to put the pieces of her life back together. “You don’t often process the emotional aspects of cancer until later,” she says. “It’s been cathartic to blog about my experience and have the site resonate with so many other patients and survivors.”

Her work as a blogger has led to many more opportunities to share her story including being asked to participate in a book, Tough: Women who Survived Cancer by Marquina Iliev-Piselli and collaborations with other advocacy groups in the healthcare space. In addition to her blog, Vanessa is a health coach and Board Certified Patient Advocate who also works for a pancreatic cancer foundation where she manages public relations and social media. She credits her diagnosis with helping her find her career niche and a meaningful role that allows her to make a difference in the lives of patients every day.

As far as her cancer is concerned, technically she is in remission, but says she is vigilant about staying on top of her health. “I have never taken my survivor status for granted,” she says. She continues to be her own advocate and has found that sometimes means she needs to find new doctors. If they are not listening to her or are not open to communication, she knows it’s time to move on. “It’s important to find a doctor who takes your concerns to heart,” she says.

Through Vanessa’s own experience with cancer, she’s learned a lot about advocating for herself and others. Vanessa has experienced firsthand what works and what doesn’t, and she is grateful to be able to share her knowledge. “If I can bridge the gap for people with a cancer diagnosis and make it easier for them to get the resources they need, then that is rewarding for me,” she says. “I had a difficult diagnosis, but I learned from my challenges and now I can share that knowledge with others. I can’t think of a better way to pay it forward than that.”

Read more about Vanessa and follow along with her journey at www.livinginsteil.com or on social media at @livinginsteil.

Read more patient stories here.

A New “New Normal”: COVID-19 Vaccine Guidelines and Cancer Patients 

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Editor’s Note: This blog was updated 1/31/22 to reflect current vaccine guidelines.

As we enter the 1-year mark of living 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 well as access to and quality 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 complicated. 

Luckily, there are trusted resources we can turn to for guidance on our most pressing questions: 

What are the current vaccines? What age groups are eligible to receive them? 

  • Moderna: 18+ years old
  • Pfizer-BioNTech: 5+ years old
  • Janssen (Johnson & Johnson): 18+ years old

How many doses of each vaccine are given and how far apart? 

Moderna

  • Primary Dose: 2 shots, 28 days apart 
  • Booster Dose: Everyone ages 18 years and older should get a booster dose of either Pfizer-BioNTech or Moderna (COVID-19 vaccines) 5 months after the last dose in their primary series.

Pfizer-BioNTech:

  • Primary Dose: 2 shots, 21 days apart 
  • Booster Dose: Everyone ages 18 years and older should get a booster dose of either Pfizer-BioNTech or Moderna (COVID-19 vaccines) 5 months after the last dose in their primary series. Teens 12-17 years old should get a Pfizer-BioNTech COVID-19 Vaccine booster 5 months after the last dose in their primary series.

Janssen (Johnson & Johnson): 

  • Primary Dose: 1 shot
  • Booster Dose: Everyone ages 18 years and older should get a booster dose of either Pfizer-BioNTech or Moderna (mRNA COVID-19 vaccines) at least 2 months after the first dose of J&J/Janssen COVID-19 vaccine.  You may get J&J/Janssen in some situations.

If I am currently undergoing treatment, can I get the vaccine? 

Yes, as long as components of that vaccine are not contraindicated. Contraindications include: 

  • Severe allergic reaction after a previous dose of an mRNA or viral vector COVID-19 vaccine or any of its components 
  • Immediate allergic 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 allergic reaction of any severity to polysorbate
  • Immediate allergic 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 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 guidelines on specific cancers, visit this link. 

Should my caregiver and/or people whom I live with also receive the vaccine? 

Yes, when the option becomes available to them. 

If I have 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. 

Am I fully protected after receiving the vaccine? 

At this time, researchers are unsure of how much protection the vaccine provides. Therefore, it is still 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: 

  • Are fully 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 

What are common side effects of the vaccine and how long do they last? 

Side effects can include: 

  • Pain and swelling on the arm where you received the shot 
  • Fever, chills, fatigue, and headaches 
  • Most post-vaccination symptoms are mild to moderate in severity, occur within the first three days of vaccination, and resolve within 1–3 days 

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

Sources:  

  1. https://www.ama-assn.org/system/files/2020-12/covid-19-vaccine-patient-faqs.pdf 
  2. https://www.cdc.gov/vaccines/covid-19/info-by-product/clinical-considerations.html
  3. https://www.onclive.com/view/nccn-releases-covid-19-vaccination-guidance-for-patients-with-cancer 

Cancer-Specific Resources:

  1. Is the COVID-19 Vaccine Safe for Myeloma Patients?
  2. What AML Patients Should Know About the COVID-19 Vaccines
  3. COVID-19 Vaccination: What Do Myelofibrosis Patients Need to Know?
  4. COVID-19 Vaccination: What Do Breast Cancer Patients Need to Know?

Patient Profile: Lisa Hatfield Part V

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This completes a five-part series from empowered multiple myeloma patient Lisa Hatfield. (Read Part I, Part II, Part III, and Part IV) In Lisa’s candid and compelling telling of her cancer journey, she shares her story from diagnosis in 2018 to how she lives well with cancer in 2021. Lisa provides thoughtful feedback about becoming an empowered patient and the value of Patient Empowerment Network as a resource, and she offers her advice to anyone newly diagnosed with cancer: Learn, Breathe, Feel, Share, Live, Connect, and Hope. In Part One Lisa tells her story. In Part Five Lisa concludes her advice to newly diagnosed cancer patients through example by sharing her own experiences, connecting to readers, and offering hope for herself and others.

Share

Not in a million years did I think I’d post an open, raw account of my cancer experience. Not one to share personal trials, other than the occasional “it’s been a long week,” I still find it surprising that I yearn for an hour to post on a website dedicated to people sharing stories about health challenges.

My decision to share came quickly, as my kids were in middle and high school at the time of my diagnosis. My diagnosis, paired with the word “incurable,” frightened me and my family. Rather than questions directed at them, I chose to notify their schools and my close friends and family about my diagnosis, requesting that questions come to me. In exchange for our daughters maintaining a normal school routine, we decided to share details by posting to a secure website, to keep those close to us informed.

Choosing to unveil your journey is deeply personal. Besides a gratitude journal, I’ve never been one to document my activities, thoughts, feelings. While in Houston, Lance set up a CaringBridge site. Prior to the first journal entry, I methodically moved in and out of appointments, listening, and absorbing the words. I was shocked, scared, numb, and out of my body. It only took a few keystrokes before emotions were unleashed. Journaling and sharing allow time to reflect. Not all entries are shared publicly. It can be highly cathartic just to write. Share with your journal alone or share with others. Occasional sharing with others is both unifying and comforting, as friends and family find a common thread to tie your diagnosis with their experiences. Sharing provides connection, and leaves you feeling less alone.

The degree to which you share your trials, tribulations, and triumphs, and when, is up to you.

Connect

One of my favorite books is The Blue Zones, by Dan Buettner. Buettner first released an article in National Geographic, then published his book on the “blue zones.” I’m summarizing this in my own words, but the blue zones refer to geographic regions around the globe that have the highest percentage of centenarians, who also have a good quality of life in their later years. These locations include Loma Linda, Sardinia (good reason for a trip to Italy), Ikaria (reason to visit Greece, too), and several other locations. In his research, Buettner discovered that the culture in these areas integrate physical and social health as parts of everyday life. Things like unintentional exercise (like walking to the market or cleaning), eating native/local foods, and at the top of the list, strong social connections. It reminded me of my grandma who used to have “coffee hour,” more like 3 hours, with her neighbors each week. They loved their weekly gatherings, often bonding over their health ailments, as they aged. I believe that each of them had a better quality of life because of those regular visits.

Upon diagnosis, a friend sent an email that ended with, “Lean hard and lean often.” He wanted us to rely on our network to get through the challenge ahead. Depending on others is incredibly difficult for many people, including me. When a neighbor set up a meal calendar, I was overwhelmed with the response and felt guilty about the possibility of burdening others and their time. She explained it like this: do it for others; let us cook meals; to allow others to provide something to you alleviates their feelings of helplessness. I am so grateful I accepted. As the fatigue swept in, my ability to cook, let alone stand for more than 2 minutes, vanished. My family loved the meals, and we’ve since collected recipes and voted on our favorites (all meals were excellent) that we fix monthly. Though a note on the sign-up sheet advised the chefs to place meals by our front door, as not to disturb us, I anxiously waited by the door every Monday, Wednesday, and Friday. Swinging the door open and greeting our friends was the highlight of my day. My energy lasted about 5 minutes, on a good day, but it felt so powerful and good to collapse on the couch after experiencing that connection.

Connection with others is important; however, connecting to anything can uplift: your animals (dogs, cats, birds, horses etc.,); your environment (sitting outside or gardening); your routine (sipping a warm cup of coffee in the morning or an evening walk); your faith/beliefs/thoughts. We are wired to connect. To belong, love, and be loved is on Maslow’s Hierarchy of Needs, a theory in psychology made up of a five-tier model of human needs. Connection is key to improved well-being, both physical and emotional. Who knows? You might conquer cancer and join the circle of Buettner’s centenarians. It’s worth the effort to connect.

Hope

While reading this same book, I was introduced to the concept of “ikigai.” (Icky-guy). Ikigai is a Japanese term that roughly means a person’s “reason for being.” As Buettner discusses in his books, TED talks, and articles, Ikigai is bigger than just something you want to do as a service; a person never feels obligated or forced into the purpose. It is something that gives value to a person’s life, as it gives life meaning. It is the reason you get up in the morning. When I began each of my cancer treatments, I wondered why I was diagnosed with multiple myeloma and why I had to endure biopsies, radiation, surgery, chemo, and stem cell transplant (collection). Each new treatment comes with a renewed sense of fear and uncertainty.

Hope is often elusive, during a cancer battle. As a myeloma patient, the word “incurable” was the vacuum that sucked the hope from my spirit. Infusions were a part-time job, as I spent half a week in the chemo suite for six months. I appreciated the openness of the chemo suite, chairs side-by-side and few closed curtains. I loved going to chemo. It felt safe. It was in the chemo chair where I heard stories of both hopelessness (from failed chemo, metastasis, fear of pain, suffering, and death) and of hopefulness (seeing family, a chemo break, a provider sharing a new study showing dramatically improved outcomes, a new drug approval, good test results, a random stranger saying, “I believe,” and connecting with friends). Hope is found in comments from your care team, friends, family, and strangers. Hope is in your experiences (“manufactured hope” from steroids counts, too). Hope is in your faith, however that manifests in your life, and in the belief that something bigger than you can help you fight cancer. Relish moments of hope…of yours and of others. Write them down when you can and, on occasion, reread them.

Now that I’m further along in my cancer journey and in pseudo-remission, I contemplate: Why…what is the purpose of this? What am I supposed to do with everything I’m learning from this? How can I use this to do something productive or meaningful? I don’t know the purpose yet, but when Lance and I talk, we know there is something more to it. This search for purpose is what gives me hope, now. I know there is a purpose in this experience that we will figure out. My ikigai. Our ikigai. I hope we can do something good.

Read more patient stories here.

Patient Profile: Lisa Hatfield Part IV

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This is Part Four in a five-part (Read Part I, Part II, and Part III) series from empowered multiple myeloma patient Lisa Hatfield. In Lisa’s candid and compelling telling of her cancer journey, she shares her story from diagnosis in 2018 to how she lives well with cancer in 2021. Lisa provides thoughtful feedback about becoming an empowered patient and the value of Patient Empowerment Network as a resource, and she offers her advice to anyone newly diagnosed with cancer: Learn, Breathe, Feel, Share, Live, Connect, and Hope. In Part One Lisa tells her story. In Part Four Lisa continues to share poignant and powerful advice based on her experiences one breath at a time.

Breathe

“You have cancer.” It takes your breath away, this phrase. Personally, the “limbo window,” from diagnosis to commencement of treatment was the most challenging. Uncertainty debilitates, terrifies, suffocates. One day at a time is too much to fathom. Take one breath at a time. Work up from there.

Feel

As I stood up from the exam room stool to leave, Dr. Mike handed me two papers. A prescription for anti-depressants and a prescription for anti-anxiety medications. “You’ll need these,” he said. I didn’t feel depressed or anxious, just numb and hollow. My only thought was whether or not I’d be around to see our daughters graduate. Given the prognosis and life expectancy for myeloma, that prospect seemed unlikely. No anger, no sadness. Just numb and breathless…again.

Shock was the first emotion. Each visit with a new provider, first the neurosurgeon, then the radiation oncologist, medical oncologist, stem cell oncologist, amped up the shock. The final cherry on top was the financial coordinator. The stem cell transplant price tag is $350,000 to $600,000.

A cancer diagnosis and accompanying uncertainty surrounding treatment, prognosis, and outcome, result in overwhelming waves of shock and fear. As the shock begins to wane, denial and questioning swiftly ride in, followed by anger, frustration, and sadness, in no particular order.

The grief cycle, usually reserved to describe feelings associated with losing a loved one, can also be applied to a cancer diagnosis. With a cancer diagnosis you lose your life routine as you knew it, and often lose hopes, dreams, and expectations. Cancer is terribly disruptive. Cancer patients feel shock, denial, anger, despair, depression, and acceptance, often sliding quickly from one feeling to another. There is no timeline for grief. Don’t feel obligated to create one. Just let yourself feel. No judgement, no time limits, no guilt, no apology. It’s okay to feel.

Live

I bought a self-serve ice cream machine in July. It’s a full-size, commercial grade machine on wheels and is parked in our garage. Not sure if it was the chemo or Covid isolation or the less-than-good news appointment I had that day that led me to pull the trigger on purchasing a used machine. Maybe it was the resulting desire to live every moment that cancer patients feel as we struggle with medication side effects, endless appointments, and the loss of life’s routine. Or the desire to deeply inhale every breath of life.

Anyway, the money spent on the machine was only a fraction of what we would have spent on a cancelled vacation. Once a week, we sanitized, set up, and filled the machine with vanilla and pineapple soft-serve mix (yes, it has a “twist” option, too). On our driveway, we could socially distance while enjoying ice cream with friends and neighbors. Ironically, chemo side effects seemed to lessen each time we started the process of setting up. I can’t wait for the weather to warm again.

When you’re feeling well, think of things that energize you. Past or present. Mine was memories of Dole Whip at Disneyland. It can be anything. Watching movies, sitting on a beach towel with a picnic, watching kids run around the neighborhood, going for a walk, writing, the ocean…the list is endless. Identify at least one activity that you can do and make it happen even if it requires soliciting the help of others and making some adaptations.

Live. As often and as big as you can.

Read Part V of Lisa’s story here.

 

The CDC is Joining the Patient Empowerment Movement

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April 15, 2021 Update:
The CDC Foundation has launched the Empowered Health Cancer – Free Challenge! This competition calls for new, revolutionary ideas and solutions that meet people where they are and empower them to live longer and healthier lives, cancer-free. If you have an idea to create better care for cancer patients, enter today for a chance to win $5,000. Learn more here.

Inspired by the question: “Could the number of cancer deaths be lowered by helping people take a more active role in their health and health care?”, the Centers for Disease Control and Prevention (CDC) and the CDC Foundation have launched an initiative which will further elevate the cancer patient empowerment movement: EmPOWERed Health.  

Complimentary to our mission and programs at the Patient Empowerment Network (PEN), the CDC’s EmPOWERed Health initiative aims to educate and inspire people to be more proactive in their health and in the prevention and treatment of cancer.  

To kick off EmPOWERed Health, the CDC Foundation will host a virtual hackathon in the spring of 2021 that will seek innovative ideas and bold approaches from a variety of people and organizations to generate ideas and potential solutions to some of the most difficult challenges in health and well-being. 

To learn more, visit https://empoweredhealth.org/ and follow #WeAreEmpoweredHealth on social media. 

The Patient Empowerment Network community is excited to have the CDC team’s talents on this vitally important effort to support cancer patients and care partners in achieving the best possible treatment outcomes!  

Patient Profile: Lisa Hatfield Part III

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This is Part Three of a five-part series (Read Part 1 and Part 2) from empowered multiple myeloma patient Lisa Hatfield. In Lisa’s candid and compelling telling of her cancer journey, she shares her story from diagnosis in 2018 to how she lives well with cancer in 2021. Lisa provides thoughtful feedback about becoming an empowered patient and the value of Patient Empowerment Network as a resource, and she offers her advice to anyone newly diagnosed with cancer: Learn, Breathe, Feel, Share, Live, Connect, and Hope. In Part Three Lisa uses her experiences to provide valuable advice about becoming an empowered patient through a willingness to learn and be open.

It’s true, knowledge is power. And it is empowering. There are so many ways to learn about your cancer, which allows you to feel that you have some control over your diagnosis. Learning from others is a great way to start, as we did with “R”, a stranger we met on an elevator at our local cancer center.

We met R a couple days after diagnosis. She was maybe five feet tall, give or take a couple inches…probably take. The elevator carried us one floor, from the main floor to the basement (I understand that radiation areas are better shielded in the basement, but it’s an awful locale for an oncologist’s office…dark, depressing, and deathly). This 20-second ride changed our lives, and quite possibly the length of mine.

My husband and I were obviously exhausted. Trying to determine the order of treatments (radiation, surgery, chemo, stem cell transplant) had us feeling like ping pong balls, bouncing back and forth, all the while worrying that my spine and spinal cord could fail at any moment. We wanted someone to tell us what to do. Information overload and miscommunications among providers left us too tired to think. We’d been mulling the idea of going to MD Anderson, but that task seemed much too daunting; not to mention that leaving our kids for a week (which morphed into a month) worried me. They were afraid, too; I needed to comfort them.

This random stranger, R, thanked us for holding the door. As the elevator door sealed shut, R gave us a stern look, “Which of you is getting zapped today?” Maybe this petite but fiery woman had some words of wisdom. Clearly, she had been going through something herself, as a large, patchy scar was evident on her neck. I explained that neither of us was going for radiation, just a radiation consult for me. Our quick elevator conversation extended for several minutes after we deboarded the elevator. She did have something to share: her story, and her words of wisdom. “Go,” she said…no, she demanded…we go to Houston for an expert consult. It was absolutely, the best decision we made during this entire journey. We were open to listening and learning as a result of desperation.

I am a researcher, and once I was under the influence of powerful steroids, I researched myeloma all night long (thank you, dexamethasone). Support groups for cancer patient and caregivers provide not only support, but educational opportunities. We’ve made lifelong friendships with our local myeloma support group and have found that it’s more a social hour than a support hour.

Learn from the entire care team. Oncologists are the cancer care “quarterbacks,” but the chemo nurses see much more of the side effects, standard and atypical, to know when to be concerned. Pharmacists are more likely to understand your bowels and digestive issues. Upon starting infusions, the oncology pharmacist introduced himself, “Hi, I’m Greg the pharmacist. I talk to people about drugs and poop. We talk openly and freely about poop. Let’s make that normal right now. How is pooping currently?”

Read Part IV of Lisa’s story here.

 

Green Monster Frittata Bites

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Green Monster Frittata Bites from Patient Empowerment Network on Vimeo.

Best-selling cookbook author and chef Ryan Scott is a juvenile 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.

Recipe:

  • 1 cup shredded russet potato (frozen or fresh)
  • 2 tablespoons butter
  • ½ cup diced onion
  • 1 clove garlic, minced (about 1 teaspoon)
  • 3 large handfuls finely chopped swiss chard
  • 7 large eggs
  • ¾ cup plain Greek yogurt
  • 1 tablespoon flaxseed
  • ¼ teaspoon salt
  • 3 or 4 large fresh basil leaves
  • ½ teaspoon chopped fresh rosemary leaves
  • ½ cup loosely packed fresh parsley leaves
  • 1 tablespoon chopped fresh chives
  • 2 tablespoons vegetable oil
  • 1 cup shredded swiss cheese

Check out our Events Calendar so you don’t miss any of the upcoming Cook & Learn sessions.

Patient Profile: Lisa Hatfield Part II

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This is Part Two in a five-part series from empowered multiple myeloma patient Lisa Hatfield (read Part I of Lisa’s story here). In Lisa’s candid and compelling telling of her cancer journey, she shares her story from diagnosis in 2018 to how she lives well with cancer in 2021. Lisa provides thoughtful feedback about becoming an empowered patient and the value of Patient Empowerment Network (PEN) as a resource, and she uses her experience to offer her advice to anyone newly diagnosed with cancer: Learn, Breathe, Feel, Share, Live, Connect, and Hope. In Part Two Lisa emphasizes the importance of being an informed patient and discusses how she values the power of PEN.

Education is critical to anyone diagnosed with cancer. A cancer diagnosis is overwhelming; it’s okay to ask for help. Having an advocate, whether it’s the patient or another person, can change everything from treatments to outcome. As an example, we quickly learned that our local oncology community does not include a myeloma specialist. Seek an expert opinion. For myeloma, hematologists are well-qualified, but a myeloma specialist is top-notch. We researched, asked around, and discovered several centers with myeloma departments. Fortunately, we scheduled quickly and summoned the resources to travel. Like us, many patients do not live near a specialty center for their type of cancer. Financial resources, and logistical resources, such as finding care for children, pets, house, etc., can be daunting to consider. Friends and family want to help. Accept the help. Educating yourself, or having another conduct research on your behalf, can change your prognosis and outcome…and your outlook. It changed mine. My overall survival (a.k.a. lifespan) potentially increased from two to four years to eight to ten years, based on access to newer treatments and information from my myeloma specialist. Education empowers and boosts hope.

Cancer is hard. Treatment can be harder. Understanding your treatments and their accompanying side effects is critical. Living with pesky, sometimes debilitating, side effects is a significant burden to carry.

In addition to asking questions of your provider, consider participating in a support/education group that includes members with your same or a similar diagnosis. We belong to a local myeloma group and meet monthly with others battling myeloma and their family members. Relief from severe, drug-induced muscle spasms is the result of after-meeting conversations with a fellow “myeloman.” I’ve learned as much from them as I have from my care team. And we’ve made lifelong friends.

Lastly, take advantage of steroid-induced insomnia and spend sleepless nights perusing the internet, but be thoughtful with your sources. Forums, blogs, articles, clinical trials, medical journals, and testimonials are at your fingertips. I enjoyed searching clinical trials and peer-reviewed medical journal articles while on high-dose steroids, in the wee hours of the morning. Now, I prefer bedtime reading of blogs and patient forums, particularly those with inspirational accounts in the midst of adversity. The supply seems endless, from general cancer topics to specific.

Patient Empowerment Network (PEN) and other cancer-related websites have helped me achieve a better outcome by publishing information specific to my diagnosis. The articles provide basic information for the newly diagnosed and identify a methodical approach to dealing with myeloma, including how to access treatment and important information regarding treatment decisions. The staging of myeloma includes “risk categories” for different genetic mutations. Prior to treatment at MD Anderson, my risk category had not been addressed, and I only knew to ask about it from a cancer website. Identifying the risk category is important when determining the appropriate chemo regimen. My regimen changed once my risk category was assigned, and I believe that my good outcome (remission) is a result of having this knowledge and addressing it with my specialist.

PEN also publishes patient testimonials. I find these stories inspiring and comforting. I’ve also identified, with my doctor in Houston, new drugs to try at relapse (myeloma patients anticipate relapse and often work with the specialist to determine the next round of chemo) from patient stories. Knowing we are not alone and having a common bond, eases stress and fear. Alleviating some of the negative emotion surrounding diagnosis helps with overall well-being, and hopefully improves outcome.

Read Part III of Lisa’s story here.

#patientchat Highlights: Vaccine Hesitancy: Let’s Talk About It

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Last week we hosted a “Vaccine Hesitancy: Let’s Talk About It” Empowered #patientchat, the community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.

Top Tweets

Concerns from Chronic Patients

“People are afraid of what they don’t understand.”

Coordinate Efforts with Community Leaders

Full Transcript

Step-By-Step Guide to Using Telemedicine

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Step-By-Step Guide to Using Telemedicine from Patient Empowerment Network on Vimeo.

The ultimate guide for a successful and safe telemedicine visit with your doctor that includes practical and actionable tips to help you utilize telemedicine to your advantage.

Transcript:

Andrea Conners

Hi, I’m Andrea Conners the Executive Director of Patient Empowerment Network. It’s my pleasure to talk with you about telemedicine and offer some practical and actionable tips to help you utilize telemedicine to your advantage, both now and the foreseeable future due to COVID. As well as, throughout your healthcare journey.

So, let’s start at the beginning with what exactly is telemedicine? Whether it is an appointment with your nurse, doctor, or mental health provider, there are times when it could make more sense to meet with a member of your healthcare team virtually using your computer or mobile device.

This approach may offer more flexibility and cut down on your time in the car or in the waiting room and, of course, decrease your exposure to illnesses such as COVID. If telemedicine is available to you through your doctor’s office or hospital you can see your health care provider for an appointment without leaving your home using a few simple steps which I’ll walk you through now.

The first step is scheduling your appointment, step two is preparing for your appointment, and step three is understanding what to expect on the day of your appointment. Utilizing these three steps will ensure you have a stress free and successful telemedicine visit.

It’s important to keep in mind that every provider’s technology is slightly different. The platforms and instructions you receive for your telemedicine visit may vary for each healthcare system. That being said, there are a few things you will need. The first is a strong Internet connection like a home Wi-Fi network. The other requirement is a computer or mobile device like a tablet or your smartphone. The device should have a webcam so that your provider can see you and a microphone so that you can communicate with the provider. Both of these are standard on most mobile devices.

Once you have confirmed that you have the necessary equipment and tech requirements, the next step is to ensure your physician or clinic has options for telemedicine. You can do this by calling the appointment staff. You may be able to see the options for virtual appointments when you log on to your patient portal that your provider has once the appointment is scheduled.

It’s important to ask how you will receive instructions for the appointment. Providers might send information to your email address or through your patient portal messaging system. Be sure to ask for telephone number in case you have technical difficulties.

After you’ve scheduled your appointment, it’s time to get prepared here’s a pro tip for you, don’t use a public Wi-Fi connection to access personal information as it can be easily compromised. If you’re going to use Wi-Fi, it’s best to do it from home on a secure connection. It’s important to also note that because you will be sharing health information during the virtual visit, your provider will use the technology that protects your information.

Here are some tips for preparing for your telemedicine appointment:

First, review the instructions that you received from your provider. Then, log on to the portal to familiarize yourself with the process and the software. Once again, every health care system is set up a bit differently so follow the provided instructions closely.

Be sure to test your system. Most software offers this option, and you can test well in advance of your appointment.

Lastly, ensure that your audio and video are working properly. If not, refer to the instructions or call the designated number to get assistance.

On the day of your appointment, login at least 10 minutes early. You may have to fill out an intake form just like you do at a regular visit or sign a consent form for care, this will all be done online. Also, and this is really important, make sure your device is fully charged. Just like an in-person appointment, there may be some time that you spend in your virtual waiting room so you’re going to want to make sure that your computer or your smartphone has enough battery to last the entire visit.

A few more things to keep in mind: make sure the sound, camera, and microphone on your device are turned on and check the levels are up and not muted. This is another really important one, be patient. As with most video calls, it takes some time, even a few minutes, for everyone to be able to hear and see each other.

Be prepared. Write down questions and topics you would like to address with your provider in advance, and just know, that there may be follow up you need to complete following the appointment, such as lab work. If that’s the case, your doctor will provide specific instructions on how best to handle this.

One important thing to note when deciding between a telemedicine versus an in-person appointment is that telemedicine is not for emergency situations. And although it might not replace an in-person appointment, some types of non-emergency follow up and monitoring appointments might be possible to conduct virtually.

Mental health resources, such as online counseling, are also often available through telemedicine. When in doubt, your health care provider can help you determine if a virtual appointment is an option for you and the best option for you.

So, all of this might leave you wondering is telemedicine just a passing trend that will go away after the pandemic is over? 54% of physicians surveyed said that they will continue to utilize telemedicine to serve their patients after the pandemic has ended. So, it appears that telemedicine is here to stay.

I know I’ve covered a lot of information in a very short period of time so if you would like to learn more I invite you to visit PEN’s website and take the full Digitally Empowered® course where you’ll learn all sorts of digital skills that will help you become more tech-savvy and empower your health care journey. The courses free self-paced and available to you at anytime you can access it using the URL (iamdigitallyempowered.org) in the green box on this slide.

Before I let you go, I’d like to tell you more about my organization Patient Empowerment Network, also known as PEN, in case you’re not familiar with us. PEN is a pan-cancer advocacy organization that focuses on increasing health and digital literacy for patients and care partners. We provide free online programs and resources designed to educate and help activate patients and care partners to share in decision making with their care team. We do this because we know that empowered patients like all of you typically achieve better health outcomes. Please join our network of empowered patients. Thank you for your time.

How Will the Medical Industry Change in the Coming Years?

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Under the influence of technology, healthcare is becoming a more complex system. By introducing features such as: 3D-printing, Nanotechnology, Artificial Intelligence, Robotics, and VR/AR, it is critical to acquaint yourself with the latest healthcare developments to understand and control digital healthcare technologies. 

There are a lot of factors at play in the modifications of healthcare. Having a profound understanding of this growing intricacy will facilitate comprehension of what’s to come. With the help of USMLE prep, the medical community keeps growing with the addition of new students and ideas.

Which Factors Contribute to Change in the Medical Industry

According to the Medicare Payment Advisory Commission (MedPAC), justification of the development of healthcare is implicated by several factors such as:

  • Health insurance coverage: While insurance coverage is an assurance of more medical services, modern trends of insurers and employers place a fiscal obligation on patients in the form of deductibles, copayments, and coinsurance, which brings about slow growth rates
  • Healthcare product and service prices: It is evident that the increase in pricing of medical products and services has impacted healthcare spending growth
  • Demographics and patient idiosyncrasies: Variations in the health status and age of the population significantly affects how much is spent on healthcare
  • Market capacity: Healthcare providers are known for consolidating at a rapid rate. Incorporating others gives a more significant market power over insurers
  • Technology: This is one factor that has the most critical effect on healthcare change, according to MedPAC

 How Technology Will Better Healthcare

In the medical world, digital technology will result in extraordinary achievements. It could help revamp unsustainable healthcare systems into more sustainable ones. Technology is shaping healthcare in the following ways:

Robotics

This is one of the rapidly growing healthcare fields. Its developments vary from robot companions through surgical robots until pharmabotics, exoskeletons, and disinfectant robots. In 2019 Europe saw its first exoskeleton-aided surgery that enabled a tetraplegic man to control an exoskeleton with his brain. These sci-fi suits have many more applications that help both the patient and the caregiver.

Artificial Intelligence (AI)

Artificial intelligence has the absolute potential to completely redesign healthcare. AI algorithms can design treatment plans, mine medical records, and develop drugs faster than any medical professional on the healthcare palette.

3D-Printing

3D-printing is capacitated to give rise to miracles in all facets of healthcare. We can print: artificial limbs, bio tissues, blood vessels, pills, amongst other things, with its help.

Healthcare Trackers, Wearables, and Sensors

This equipment is excellent for getting to understand ourselves better and reestablish control over our individual lives. These devices help you manage your: stress levels, weight, cognitive capabilities, and overall fit and energetic level. The real advantage of these tech-fueled appliances is that it centralizes the patient’s care.

Augmented Reality

Users of augmented reality do not lose touch with reality, and it ingrains information into the eyesight as fast as possible. These unique aspects allow AR to become a driving force in therapy for the receivers and providers of healthcare.

Medical Tricorder

As far as instant solutions are concerned, this gadget is considered every medic dream for an almighty and omnipotent device. It is a handheld device that enables you to diagnose and analyze every disease by scanning a patient.

Nanotechnology

We are on the brink of a nanomedicine era. Soon, nanodevices and nanoparticles will be critical; tiny surgeries, drug delivery systems, or cancer treatment.

Revolutionizing Drug Development

The procedure of formulating new drugs is long and expensive. There are techniques to enhance drug development with designs ranging from silico trials to artificial intelligence. New strategies and technologies are already dominating the pharmaceutical landscape and will continue to do so in years to come.

Virtual Reality

Virtual reality is altering the lives of patients and also physicians. It is possible that in the future, we will watch surgeries as if you wielded the scalpel, or you could travel home or to any other part of the world from your hospital bed.

Something to Think About

Technology is becoming more and more rooted in medicine, and it is essential to have an idea of the future methods of implementing healthcare with digital health on the rise.

Genetic Testing: How do Results Impact Metastatic Breast Cancer Care?

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In this podcast, breast cancer expert Dr. Erin Roesch explains how genetic testing results could impact metastatic breast cancer care–including treatment options–and provides advice for self-advocacy.

Dr. Erin Roesch is a breast medical oncologist at Cleveland Clinic. More about this expert here.

Transcript:

Katherine:     

Welcome to Empowered, a podcast by the Patient Empowerment Network. I’m your host, Katherine Banwell.

Today, we’re talking about the role of genetic testing in metastatic breast cancer care—how results can impact treatment options and decisions. We’ll also discuss new and emerging treatment options.

Joining us Dr. Eric Roesch. Dr. Roesch, could you please introduce yourself?

Dr. Roesch:        

Sure. So, my name is Dr. Eric Roesch. I am one of the breast medical oncologists at Cleveland Clinic.

Katherine:       

Thank you. And let’s just start with the basics. So, what is metastatic breast cancer?

Dr. Roesch:  

Metastatic breast cancer refers to a cancer that began in the breast and then has spread to involve other parts of the body. Although metastatic breast cancer is likely uncurable, meaningful advances have been made in treatment over the last several years. The primary goals of treatment are to improve survival, as well as quality of life and symptoms.

Katherine:       

Dr. Roesch, when patients are first diagnosed with Metastatic breast cancer, are there misunderstanding that they have and what are some of them?

Dr. Roesch: 

I think a common misconception that I hear when patients are first diagnosed with metastatic breast cancer, is the availability of treatment options. At the initial clinic visit, I really strive to make sure patients understand that although metastatic breast cancer is unlikely curable, it is very treatable. And we have a lot of therapies, especially that have been approved in recent years, that can help patients live better and longer lives.

Katherine: 

That’s really encouraging.

As I mentioned, we’re going to talk about genetic testing, also known as molecular testing.

So, what is genetic testing exactly?

Dr. Roesch: 

Genetic testing refers to any type of testing that can help determine an individual’s genotype. Which is essentially, the DNA makeup, or DNA blueprint, that is associated with clinical manifestations of a certain disease or a specific trait. A phenotype, rather. Genetic testing can be determined for a germline, which refers to cells arising from the germ cells, which are applicable the vast majority of the body.

Or they can be selected for somatic cells, such as those found within tumors. Genetic testing can be helpful for metastatic breast cancer, as there are various drug therapies that are approved for patients found to have specific mutations. For example, if a woman is found to have a BRCA1 or 2 mutation, she may be a candidate for a medication called a PARP-Inhibitor.

Olaparib and talazoparib are both PARP-Inhibitors that are approved for patients with germline BRCA mutations and HER2 negative metastatic breast cancer.

Dr. Roesch:    

Genetic testing is administered in a couple of different ways. So, first it can be performed on blood or saliva containing cheek cells, essentially.

Testing on tumor tissue can also be used to identify additional acquired or somatic genetic changes.

Katherine: 

You mentioned HER2, what is that?

Dr. Roesch:

HER2 is a protein that’s expressed on many other cells throughout the body.

Some breast cancers are driven by, or over express this protein. And that can be helpful to identify patients that might benefit from HER2 targeted therapy.

Katherine: 

And what about BRCA1 and BRCA2, what are they?

Dr. Roesch:   

BRCA1 and BRCA2 are proteins that are involved in DNA repair in the body. And any time one of these mutations is defective, there is an error in DNA repair.

Katherine: 

So, as I understand it, genetic testing can lead to more targeted or personalized treatment. How has targeted therapy changed the landscape in treatment?

Dr. Roesch: 

Targeted therapy has definitely had an impact on metastatic breast cancer treatment. There are various therapies that are now approved for patients with a certain breast cancer subtype. As well as for those with specific mutations or protein over-expression. Some examples of these include, CDK4/6 inhibitors, BRCA mutations, PIK3CA mutations and PDL1 expression. For example, for a patient that is diagnosed with triple negative metastatic breast cancer.

It is now routine practice to evaluate PDL1 status. Which can identify whether a patient is a candidate for, and might benefit from, immunotherapy.

Katherine:

And when thinking about genetic testing for metastatic breast cancer, is the testing standard or is it something patients should ask their doctors about?

Dr. Roesch: 

I would encourage patients to have open lines of communication with their doctor. And certainly, ask about genetic testing. I think it’s important at certainly the initial visit, and subsequent visits, to always review family history, as this might change.

Here at Cleveland Clinic, we work very closely with genetic counselors. And they are always also available to help answer any additional patient questions.

Katherine:  

Let’s shift a bit to self-advocacy. When someone has been diagnosed with metastatic breast cancer, what do you feel are key steps they should take?

Dr. Roesch: 

I think there are several important things for a patient who is newly diagnosed with metastatic breast cancer to consider. First, I think it’s important to try and have open lines of communication with your oncologist and care team. It’s really important that we as providers are aware of our patient’s goals, wishes and any concerns they might have. Secondly, I would encourage patients to try and be educated and informed about your diagnosis and treatment. I think it is helpful when patients know what to expect, in terms of how they might feel after starting a certain treatment.

Including side effects to be aware of. I think it’s also helpful to understand that the treatment for metastatic breast cancer is a journey. And there likely might be changes or challenges that happen along the way. And that is where we as the oncologist and care providers come in to help explain things as they happen.

Lastly, but just as importantly, I think it’s really essential to continue to enjoy life and do the things that you like to do. Of course, always doing so in a safe fashion and always check with your physicians about any restrictions related to the type of treatment you might be on.

Katherine: 

Why is it so important for patients to partner with their physician on their care decisions?

Dr. Roesch:  

I would say it is very beneficial when patients are engaged in their own care and treatment plan. I often have patient that will come to our clinic visit and have a detailed list of questions for me, and I love this. I think it is empowering for patients to understand and be involved in the development of their treatment plan. This type of interaction also really helps to foster a relationship between patients and their oncology providers.

Katherine:  

And what about patients who don’t feel comfortable being their own advocate? Do you have any advice for them?

Dr. Roesch: 

For patients who maybe have difficulty speaking up or self-advocating, I think a strong support system can be very helpful in this case. This can also be helpful for patients who are comfortable advocating for themselves. It can be helpful to identify others who are close to you, who can help relay any concerns or issues that may arise.

There are also support groups and an entire network of resources within the cancer center that are available to our patients.

Katherine:

Thank you for joining us today, Dr. Roesch, and sharing this valuable information.

Dr. Roesch:  

Happy to be here, thank you.

Katherine:  

And, thank you to our listeners for joining us.  This has been Empowered, a podcast by the Patient Empowerment Network.

I’m Katherine Banwell.

Don’t miss an episode and subscribe to PEN’s Empowered! Podcast wherever podcasts are available.

Patient Profile: Lisa Hatfield Part I

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This begins a five-part series from empowered multiple myeloma patient Lisa Hatfield. In Lisa’s candid and compelling telling of her cancer journey, she shares her story from diagnosis in 2018 to how she lives well with cancer in 2021. Lisa provides thoughtful feedback about becoming an empowered patient and the value of Patient Empowerment Network (PEN) as a resource, and she offers her advice to anyone newly diagnosed with cancer: Learn, Breathe, Feel, Share, Live, Connect, and Hope. In Part One Lisa tells her story.

April 30, 2018

Two hours after the MRI, my doctor, having received a call from the radiologist: “Lisa, it’s Mike. I just received the results from your MRI.” This didn’t sound good. “You have a tumor on your spine. These types of tumors are almost always malignant,” he said. “In fact, I’m just going to say, it’s a malignancy. Can you and Lance come and see me first thing in the morning?” My world stopped.

Backing up a couple of years, I’d been battling a variety of aches and pains. Usually brushing them off and attributing them to aging, improper body mechanics, being out of shape, and garden-variety stress from the busy-ness of life, I got along okay. Until I couldn’t. The year prior to diagnosis, I had suffered from a frozen shoulder on my left side, then right. I maxed out my physical therapy sessions in an attempt to alleviate a weird hip pain that occasionally felt better after PT, but progressively worsened over time. Walking and attempting daily tasks (like crawling into bed) resulted in significant pain. I was not thriving.

Back to d(iagnosis)-day, 2018, we met with Dr. Mike and continued the week with a dizzying schedule of appointments, phone consults, procedures, tests, and communications with various other medical personnel.

I had a plasmacytoma (tumor) that had “eaten away” at my spine at the T-12 level. My diagnosis: multiple myeloma. Multiple myeloma, myeloma for short, is a blood cancer, originating in the bone marrow. The first radiation oncologist we saw described myeloma as a “liquid” cancer. I thought it was an odd explanation. I later learned that “liquid” is in contrast to a “solid” cancer, such as breast cancer or colon cancer, which typically involve masses or tumors. This didn’t matter much, other than the notion that I had both a liquid and solid aspect of myeloma. My treatment required managing the plasmacytoma (solid) and the actual cancer in the bone marrow (liquid). Myeloma develops in the plasma cells of the bone marrow, the soft, spongy center of the bone. Plasma cells are a type of white blood cell and are important for producing antibodies to maintain the immune system. In myeloma, for reasons yet determined, the healthy plasma cells turn into malignant cells (myeloma cells). These myeloma cells replicate and “crowd out” the good cells. This transformation results in fewer “good” antibodies, which is why many myeloma patients complain of frequent infections prior to their myeloma diagnosis.

Myeloma is incurable.

I live in Boise, Idaho. A nice, small city with good, reliable health care but no myeloma specialists. The best decision we made regarding my diagnosis was to seek a second, expert opinion. Two weeks after that dreadful call, we were at MD Anderson Cancer Center in Houston.

My myeloma diagnosis was confirmed with a bone marrow biopsy. For anyone with myeloma, you might be curious to know that I was diagnosed with monosomy 13 and translocation (11;14). These are genetic mutations found on the myeloma cells. I have Kappa Lightchain Myeloma.

The most pressing issue was the plasmacytoma, as the location and growth had compromised my spine. My doctors indicated the cancer was secondary to the spinal cord compression. It didn’t feel secondary to me, as they described “scattered lesions”, or holes, throughout my skeleton, including my skull. I wanted to know about the cancer more than the spine damage. The team at MD Anderson worked closely, one specialist often conferring with another, as I sat in the room listening to their conversations. It was quickly decided that I would begin radiation immediately. Radiation served to shrink the tumor and destroy malignant cells. Radiation was a bit difficult, as the tumor and surrounding area became inflamed and swelled, creating significant pain, but that was short-lived, lasting eight days. On the last day of radiation, I was wheeled into surgery for spine stabilization. The partial vertebra was not removed, as this was deemed too risky. The procedure did stabilize my spine and prevented further collapse and spinal cord injury. After five days in the hospital and a couple nights at a nearby hotel, we flew home.

My medical oncologist in Houston devised a “chemo cocktail,” which included a drug only accessible to specialists. For six months, I went to our local hospital every Wednesday and Thursday to have this cocktail administered intravenously. I have great memories of those six months. Truthfully. Meeting people each day, seeing the weekly “regulars,” and spending several hours with my girlfriends is one of the most memorable periods of my life. Funny how the mind works. Those moments are deeply embedded and overpower memories of the lousy side effects.

Standard of care for myeloma patients is chemo, followed by an autologous stem cell transplant (ASCT). Transplant is not a cure for myeloma, but research has shown that it can lead to a longer remission if it “takes.” Due to multiple factors, I chose to have my stem cells harvested and stored, rather than harvested and transplanted. Once the six months of chemo was complete, we traveled to Seattle for three weeks for re-staging and stem cell harvest. My stem cells are securely frozen and ready for future use.

Bilateral bone marrow biopsies (one in each hip bone) confirmed that I had an excellent response to chemo, and I’ve graduated to maintenance chemo. Thankfully, my current cancer drugs are oral, so I only report to the cancer center once a month for labs and an oncologist visit. Because there is no cure for myeloma, I’ll be on these drugs forever. They’re not fun, but they’re tolerable. They keep my myeloma numbers down so my body doesn’t have to fight so hard. My spine is healing and there is a possibility that some of the bone could grow back. My neurosurgeon recommended limiting activities to walking and swimming forever, but I’ve snuck in a few easy hikes with my family.

I’m hoping for a cure, but in the meantime, I’m enjoying life as it is. It’s really good.

Present Day

Until there is a cure, I’ll always have cancer. It’s a part of me and a part of my story. My biggest takeaway is that it’s a new life. It’s not a new normal. With daily reminders, such as pill-taking, side effects, and scars, nothing feels “normal.” It’s a new life. In addition to the daily reminders, I have deeper friendships and connections, I understand the importance of slowing down and not letting the “white noise” of life overwhelm me, and I feel so grateful for each new day. The greatest takeaway is that over time, the triumphs grow bigger than the scars; and this new life, though not without stress and suffering, would not be possible without cancer. It’s the best life I’ve ever had.

Read part II of Lisa’s story here.