Patient Stories Archives

Your Cancer Journey is Yours 

I’ll never forget how I felt on October 1, 2010, when a phone call changed my life. After a routine annual “neck check” turned out to not be routine at all, I learned that I had thyroid cancer. That day, I became a member of a family of over 18 million cancer survivors in the United States. 

I overshare all the time. I figure if I’m going through something, I might as well let someone else learn from it. I started sharing my diagnosis with friends, who in turn told others. And wow, did those people rally around me! Offers to drive my kids (4th and 5th grade at the time), food, gifts; people were excited to be part of my journey and to meet milestones and revel in good news. I truly felt like a “trophy patient.” And I quickly met a “scar sister,” whose surgery preceded mine by three weeks, allowing her to be an unparalleled source of information and support.  

Fast forward 13½ years, I’m still here! While I still have active cancer cells (thanks to a recurrence with metastasis in 2012), I’ve been stable since 2013. I had a squamous cell carcinoma removed from my left eyebrow in 2019, so I’ve now got two very visible scars to show for my three diagnoses.  

How does my story tie to the title, “Your cancer journey is yours”? Because YOU don’t have to overshare, or even share. YOU don’t have to be, as a friend experiencing a recurrence put it, “everyone’s inspiring cancer patient.” YOU don’t have to do blog posts, appear in videos or be in support groups. YOU don’t have to wear a ribbon or dye your hair pink or teal or whatever your cancer color is. As my kids say, “YOU do you.” Many of us feel tremendous support from the community of people who’ve faced cancer, but it’s your choice whether and with whom to share your experience. 

The National Cancer Institute defines a survivor: “An individual is considered a cancer survivor from the time of diagnosis through the balance of life. There are many types of survivors, including those living with cancer and those free of cancer.” That’s the one thing I want you to take away from this post: YOU ARE A SURVIVOR. Whether you’re newly diagnosed or have been living with or beyond cancer for years, YOU are a survivor. Survivorship is on your terms, whether you shout it from the rooftops or keep it a secret.

If you’ve been less public with your cancer journey and would like to connect with others like you, here are some options for connection: 

  • PEN’s Empowerment Leads: these wonderful volunteers are the heart of our efforts to connect survivors with support. 
  • PEN’s partner organizations that offer survivor support 
  • For support related to your exact diagnosis, visit PEN’s web site, which shares resources by cancer type. 
  • Please feel free to reach out to me at tracy@powerfulpatients.org. It would be my honor to help you find your people.

I never thought anything would mean more to me than the support I got from fellow survivors. I was wrong. Being that survivor is the most meaningful experience, and it’s why I am honored to lead the Patient Empowerment Network.

Cancer Patient Profile: Linda Ryan

As a survivor of thyroid cancer, adenocarcinoma in situ of the cervix, and seven cancer recurrences, our PEN Gynecological Cancer Empowerment Lead Linda Ryan has learned a lot about cancer treatment and about life. She’s discovered the value of self-education, clinical trials, and friendships among many other things. 

Linda’s first cancer experience occurred in 2002 with her thyroid cancer diagnosis. She received successful treatment and then two years later, as a result of a routine pap exam, she was diagnosed with stage 0 adenocarcinoma in situ of the cervix. Linda had a hysterectomy and no other treatment. And then seven years later, she found a lump on her neck that her doctors diagnosed as thyroid cancer recurrence. She had a radical neck dissection scheduled but found some lymph nodes in her groin area ahead of her surgery date. The sense of urgency for treatment increased considerably after the physician assistant knew Linda didn’t have thyroid cancer.

Linda learned that the standard of care option had a 15 percent response rate for her diagnosis, and the clinical trial was seeing  a 31 percent response rate. She chose the clinical trial since it increased her chances by 16 percent. She traveled from Florida to Houston for treatment, and she did that for eight rounds every three weeks and then had no evidence of disease.

Clinical trial participation wasn’t something that Linda would have known to ask about initially, but she’s participated in a few trials. Patients can find all clinical trials on clinicaltrials.gov. “It’s important for patients to ask their doctors about trials and to do research on trials, knowing that they may not be eligible for certain ones if they don’t have certain cancer mutations or other treatment factors. Trials are available to patients in community settings and not just teaching institutions. I feel like I’m using them and getting the benefit of kind of cutting-edge medicine that isn’t available. So I think it’s important for people to seek out trials and educate themselves if there is something available for them.”

One key piece of advice from Linda is don’t give the cancer any more power than it deserves. “So I think it’s important to always remember you’re in charge, and you’re more powerful than the cancer. The words you use to talk about your cancer are very important. So knowing that when I exercise, I feel stronger than the cancer, even if I’m not lifting weights, but I’m moving.” She also recommends using mental exercises or spiritual practice as a way to keep your personal power during your cancer journey and to keep excessive anxiety at bay. 

At the beginning of her cancer journey, Linda asked her doctor if she could keep running. Her doctor advised her to keep moving as much as she could. A group of Linda’s friends decided to host a 5K in her honor. “The goal was just to get our community moving and to hear that message of the importance of exercise. And it gave me a lot of mental strength.”

Reflecting back on the initial 5K event, Linda and her friends set out with specific goals for the event. They wanted the community to hear their message and wanted 300 people to participate in the first race. They were simply overwhelmed with joy when 900 people registered. They only needed 300 people to register to cover the expenses. The large event turnout meant that they had plenty of money left to donate. 

And we had a small amount of money at that time, but we thought, “Well, we can do something good with this money.” And so we created a 501(c)(3) charity, and it became an annual event and an event for our small town in Florida to land, and Central Florida really embraced it. Fast forward to 2020, right before the pandemic we had 6,000 participants. It was just us five women running it. We all had different talents and decided it was time for someone else to take it over.”

Up until the time that the new organization took over in 2023, Linda’s efforts with her friends gave a little over $2 million. “So many good things came out of it, we’ve touched so many lives of people living with a cancer diagnosis and going through that process. But in addition to what the beneficiary money went to, the event united our community.”

While Linda was enduring her cancer journey, her whole town was looped in on what was happening with her. “When I would have a recurrence, I’d be in the grocery store in tears, because someone would know it was just like everyone knew. And so lightning in a bottle was such a great way to describe it. And then the other thing is because there aren’t a lot of recurrent cervical cancer survivors, especially six, seven-time survivors, I’ve been able to, hopefully, be a voice for other women.”

Linda has formed an educated opinion about cancer information. “Having more information can help all of us patients make better decisions and more informed decisions and talk to the doctors about things that they weren’t necessarily thinking would be specific to you. But getting more information can be a double-edged sword. Sometimes the more information we have, we can fall down rabbit holes and our cancer might not be this exact mutation, and we might read something on the Internet that isn’t necessarily relevant for our own situation. Make sure to talk with your doctor about information that you find.”

As for patients navigating their cancer journeys, Linda feels it’s important for patients to be empowered and to handle their cancer journey how they want to go through it. “Some patients may want someone else directing everything, but that’s their choice. Some people only tell their spouse. I think caregivers need to respect what the patient wants. That doesn’t mean the patient doesn’t need a reminder from time to time that they need to get up and put a smile on once in a while. I wouldn’t want to be the caregiver. It’s so hard for them, since they can fix the cancer.”

Last November, Linda had a scan that showed no evidence of disease, but she remained on pembrolizumab (Keytruda) as a precaution. “I receive it every three weeks through my port, but it’s super easy. I don’t have side effects. It’s 30 minutes. It’s not life-changing at all. So I hope to be on it for a really long long time, and I get scans every three months. I feel great.”

Though she never could have imagined enduring two types of cancer and seven cancer recurrences, Linda remains grateful for the good things that have come from her journey. “My prayer the last two years was, ‘Please let me live and use me as however I need to be used to help other people.’”

Let’s Talk About NETs 

Neuroendocrine (NET) cancer is a challenging diagnosis for patients, care partners, and medical providers alike. On NET Cancer Day, our Director of Marketing and External Affairs, Nicole Normandin Rueda, shares her family’s NET story. We are so grateful to Nicole for her candid account of her family’s experience, and for the passion with which she serves the cancer community. For information about neuroendocrine cancer organizations, please see below.  

Nicole’s Story

Throughout my life, I have seen firsthand – both personally and professionally – what true inner strength is. I walked alongside my dad through his battle with pancreatic neuroendocrine tumors and held his hand as he took his last breath. I have also stood alongside patients with rare vascular malformations as they hear news of a poor prognosis or been seated with the parents of a 5-year-old patient who was so full of life, that no one could even begin to comprehend the significance of a diagnosis like DIPG with a 0% chance of survival. I guess it’s safe to say that I have seen my fair share of illness and adversity; however, in each of these scenarios, I have also been fortunate enough to see some incredible moments of hope and encouragement. Today, November 10, 2023, World NET Cancer Day, I am here to share a little bit of my experience, and what I have learned along the way to remind all of us that no one is in this alone.  

“We cannot change the cards we are dealt, just how we play the hand” – Dr. Randy Pausch  

As many who have any experience with NET cancer know, it is often the delay in receiving a proper diagnosis that is one of the initial challenges. This was no different for my dad, taking over a year from the time he first reported symptoms to the time of his official diagnosis. In early September 2005, my dad saw a gastroenterologist in Laredo, TX after he was unable to keep water down for a week. The doctor did an endoscopy and saw what he described as “scar tissue lesions” on my dad’s stomach and decided to prescribe Nexium to lower his astronomically high gastrin levels. Fast forward to January 2006, the doctor recommended that my dad stop the Nexium to ensure the gastrin levels lowered. Within three weeks of stopping Nexium, my dad was throwing up again. Finally, after more than three months of scans, and the requirement that my dad carry medical documentation explaining his “atomic state” from all the nuclear testing, it was determined that my dad had Zollinger-Ellison Syndrome, which we were told could cause tumors. This realization created the momentum to get my dad referred to MD Anderson for treatment. He was informed he met protocol, and we made the 6-hour drive to Houston, TX for the litany of tests required before MD Anderson would provide clarity on diagnosis and treatment.  

At the time, we were looking for all the answers, and MD Anderson was able to confirm that my dad had Stage IV Neuroendocrine gastrinoma tumors with the primary site in his pancreas and metastases in the liver and lymph nodes. In hindsight, it is astonishing how little our family knew when it came to cancer treatment, language/jargon, protocols, etc. My paternal grandfather had just passed away from mouth cancer that metastasized to his brain, so it was not that we were naïve, but we just had no idea what aggressive treatment for Stage IV cancer looked like. My dad was 52 years old at the time, and he was my hero – a symbol of perseverance and strength. He was the Vice President of Operations at a manufacturing plant, he walked 18 holes of golf in 108-degree weather because he enjoyed the exercise – he thought he was invincible. He was also very stubborn – so much so that 20 years earlier, he was insistent on teaching himself Spanish and did so in a matter of months so that he did not have to rely on paid translators for his job. Initially, we all felt overwhelmed – we got the diagnosis, but we still wanted answers. There is a reason that I strongly discourage families from consulting Dr. Google –I can remember googling neuroendocrine carcinoma originating in the pancreas and only seeing information on Stage IV Pancreatic Adenocarcinoma, which was discouraging, to say the least.  

That feeling – you know the one, like you have just been sucker punched in the gut – is very familiar when I reminisce on this time in my life. Quite literally, I stopped breathing for a second, it was a moment of panic and fear, a future flashing before me without my dad in it. It happens to the best of us – the news of a cancer diagnosis is life-altering in so many ways for each person in the family. And so often, the person delivering these messages can be a little numb to the impact their words are having, these oncologists see new diagnoses all day, every day. At the time, there was such limited information available on NETs that it got to be confusing and quite frankly, disheartening. My mom tells the story of an oncologist trying to help us differentiate his diagnosis by explaining that my dad had the ‘best kind of the worst kind of cancer’. Infuriating, and not helpful. For all intents and purposes, at the time, he had pancreatic cancer. There were quite literally no resources that we could find for his NET and the pancreatic cancer resources we did find were limited at best.  

Instead, what got us through the first 2 years was hope. Despite the rollercoaster of emotions that a Stage IV cancer diagnosis is, my dad’s mindset was to focus on finding the strength to overcome the odds and keep a positive outlook. It was the attitude with which my dad, and so many others, chose to have throughout the life-changing cancer diagnosis that gave everyone in our circle a sense of strength. My dad went from feeling invincible to wanting to cherish every moment he could, he knew that cancer was now a chapter of his story, but it was not going to write his book. Don’t get me wrong, he had days where he was mad at the world, but he also had days that he was grateful for the chance to fight another day alongside his favorite people.  

“So you have to trust that the dots will somehow connect in your future. You have to trust in something — your gut, destiny, life, karma, whatever. “ – Steve Jobs 

As so many impacted by cancer know, the struggle to keep the faith and positivity is the difficult part. The fact that one test result can disqualify you from a potentially life-saving treatment is distressing. It was difficult to remain positive when there were medical professionals giving us information that was borderline incomprehensible. We asked his medical team if it was okay to record all the updates they were giving because while we knew the words coming out of their mouths were important, we had no idea what most of them meant. This was a game changer, and something I encourage every single patient and family member to do if their medical team allows it. If not, ask for everything in writing (either printed or via a portal). As PEN says, the best cancer care happens when you’re empowered to ask the right questions at the right time. The person who did this was my mom – she was the one making sure my dad took all his meds, ate enough protein, and asked all the questions she needed to ensure we walked out of the room feeling like we were part of the decision-making process. Having a strong care partner is invaluable – but finding a support network (if you don’t already have one) is equally as important.    

That is the thing about cancer, it takes so much away from everyone it impacts. The ability to keep faith and trust in something (whatever that may be) is incredibly difficult. There are so many situations that are just unfair – from not meeting protocols for a new treatment option to being pushed to extend life that has no quality because you do meet certain protocols. It is overwhelming to think about the infinite possibilities. What can be helpful is to focus on the things you can control and trust yourself. Cancer cannot take away the relationships with those around you. Personally, I am grateful that a Stage IV NET diagnosis was not able to take the memories I made with my dad, the priceless gifts that I keep with me every single day. I have no regrets – I carry him (and others whom I have met along the way) with me in everything that I do. My advice to others when asked how I have been able to cope with the incredible amount of loss I have experienced in my life is to make sure you stop and appreciate the moments and record the memories. There are opportunities every day to spend some one-on-one time with those around you – especially those impacted by cancer. This journey is not one that anyone can or should get through alone. Whether it is finding a support group, finding a counselor, talking with friends, or spending time with your pets (that was one of my dad’s favorites), it is so important to seek opportunities to connect with others.  

Over the next 5 years, my dad beat all the odds. He kept up with his quality of life for nearly all his remaining days – being able to attend my brother’s wedding, watching me graduate with 2 degrees, and spend LOTS of one-on-one time in the car with my mom going to/from Houston for treatments. It was not until early 2012 that we were told there were no additional treatment options, and we had to start thinking about palliative care. Up until that point, my dad had been doing well – he completed 10 rounds of 5FU chemotherapy, his lifetime limit of radiation, five surgeries, and a clinical trial. This is where my professional training as a social worker comes into play. Again, hindsight is 20/20, but at the time, since my dad looked so healthy externally, we never had in-depth conversations regarding his wishes when it came time for hospice and palliative care. My mom, thankfully, had the wherewithal to make sure my dad’s wishes were respected, along with advance directives, etc., but as a family, we did not explore palliative care options.  I don’t think he was offered palliative care until, in my opinion, it was no longer a palliative care situation. The last weeks of his life were incredibly difficult for all of us. The decisions we made, as a family, during that time were the product of painful discussions with a 59-year-old man who was in unbearable pain. He did the best he could, and we were alongside him every step of the way. He was able to take his last breaths surrounded by those that loved him the most. I have dedicated my career to ensuring other families impacted by cancer have the psychosocial support they need.   

Rare cancers, like NETs, have some incredible resources and support networks that can be transformational for people with cancer and their families. Don’t be afraid to ask for resources. Hospice and palliative care teams can also be incredibly helpful, and at times will overlap. Palliative care is meant to enhance a person’s current treatment by focusing on the quality of life for them and their family. Palliative care teams are multidisciplinary and comprised of doctors and specialists, as well as social workers, chaplains, and nutritionists who will provide as much support as needed to improve quality of life and is a fantastic opportunity for patients to be active participants in their medical treatment.  

If you got this far into this blog post, I would like to make sure you walk away with these words – Surround yourself with people who you love to help you be proactive in making decisions that impact your journey. It is critical that patients and their families are empowered to understand their situations, feel confident to ask the right questions and be an active part of the decisions that need to be made. It has been 10 years without my dad, and I would give just about anything to have him by my side today, instead, I am able to carry my dad’s legacy with me, still doing my best to make him proud. Hug your loved ones extra tight today, on World NET Cancer Day and try to remember that you are not alone. I leave you with this piece of advice from my dad, Mike Normandin, that I often turn to on especially tough days, “Stay positive. Life is about choices. Make choices that are going to make you happy…Love is the most important thing in life…”  

P.S. If you want to hear him give this advice, feel free to check out this advocacy video my parents and I made over 12 years ago or this clip from my hometown’s local evening news (apologies in advance for the poor-quality audio).

Neuroendocrine Cancer Organizations

Thoughts on Survivorship

Wellbeing

When the hotel alarm sounded on July 31, 2023, I woke up, put both feet on the floor, brushed my teeth, laced a pair of work boots, and caught an Uber to a factory in Potrero Hill of San Francisco.  On this work trip, with my team, we operated water treatment equipment that morning and then had lunch at a taco truck. After more work and a team dinner at a Japanese restaurant, another Uber whisked me back to the hotel in time to catch the impressive sunset over the Golden Gate Bridge.

As the sun reflected off San Francisco Bay I reflected on the past 27 years.  You see, July 31 marks my cancerversary, in other words the date that the doctor finally told me, “You no longer have cancer,” and that date marked 27 years since that discussion when I was a college student in the 90’s.

A handful of my friends know the date and sent well wishes, and on that date, old memories of my experience with Hodgkin’s Disease and prior cancerversaries have their way of returning to top of mind. I remember wanting cancer out of my body so badly and the desire to live and healthy and happy life thereafter; today we call this wellbeing.

I thought about those first steps after my doctor’s good news. Walking out of his office as a newly minted survivor felt like heading out on a journey without a map.  He had prescribed a regimen of scans, bloodwork, and follow ups which would gradually lighten as time progressed.

I dutifully followed, attended, and completed these appointments and every time sweated the results of each of them.  The new normal felt a lot more uncertain than it did before cancer. To live a healthy life as a survivor means taking on the hard stuff like waiting on results, but it also provides a level of comfort knowing the course of tests monitored my body very closely. Over time, the intervals between these exams lengthened from three months to six months. Then annually. Then never again after year 10.

Like many survivors, cancer influenced my health decisions, especially diet and exercise, to live a life with wellbeing.  Healthy habits have to underpin decisions. For me this meant getting into running and swimming. I remember running about six months after finishing treatments and could not make it 50 yards.

Sticking with good habits, stacking wins, will help healing and mental wellbeing. Whether you aim for mountain peaks or marathon finish lines, or you start a daily walking habit, movement and mobility will help the body bounce back; this worked for me.  I kept getting out there day-after-day, doing those 50-yard runs which eventually stretched further. Let your body guide you; listen; just move.

Over the years, having met so many other survivors, handling cold and flu season after cancer has some challenges. I remember the Fall after my treatments concluded, I came down with the sniffles and immediately thought cancer had returned.  Taking it a step further, I twisted my ankle on a jog about four months after finishing treatments and thought that my ankle now had cancer. It didn’t.  Relearning and listening to your body take time and those reactions are something I think all survivors experience.

One health dilemma I faced early on after the end of treatment happened in college.  The social scene at my (and many) colleges involved parties and bars. I enjoyed going to these, not so much for the alcohol but for the camaraderie. At the time (the 90’s), you could smoke in bars.  After standing in the smoke- filled college bars a few times and still worried about a relapse, I decided to change my approach. Instead of tolerating the environment, I would arrange meetups with friends earlier and would leave if it got smoky. Though I may have missed out on some late-night revelry, it meant prioritizing health first. Making this and other tradeoffs like it over the years have led to a healthier overall life without the worry of deprioritizing my health.

As the sun went down over the San Francisco Bay and the memories receded for another year, the second lifetime of chances left me with a warm appreciation of life and a gratitude for a second opportunity knowing that when the alarm sounds on the next ordinary day, August 1, I have the chance to keep going.

Good health to you.

AML Patient Profile: Jordan Supino

As Jordan Supino shares his acute myeloid leukemia (AML) patient story, it’s quite striking to hear his love of life and passion for helping others. Calling himself “The Cancer Killer,” Jordan has an inspiring dedication to fitness, faith, family, finance, and fun, for overall health and wellness. He shares the perspective he’s gained, “People need to understand that there’s a purpose for everything. We go through situations, and you have to see it for what it is. What’s the message? You may be listening to the doctor, but you need to hear what it’s preparing you for. I believe that everything that we go through in life is truly preparing us to grow later in life. If you learn to start cooperating instead of chasing, those tests will become your testimony for the world. There’s a greater good in learning to help others.”

As for Jordan’s cancer journey, it began with being hit with hot and cold sweats along with major leg cramps that he’d never experienced before. He dismissed the symptoms and returned for a gym workout a few days later when his body started trembling, which brought on a partial collapse and his legs becoming locked up in extreme pain. Jordan was diagnosed with AML in July 2011, which led to him being hospitalized for about two months while he received high-dose chemotherapy.

After completing that round of chemotherapy, Jordan’s doctors informed him that he’d need to return for his next round of chemo in 4-1/2 weeks and to prepare for a bone marrow transplant. Much to his doctors’ surprise, he vowed to them that God would be granting him a miracle and that the power of his mindset would eliminate the cancer and any thought of a bone marrow transplant. Jordan further promised that he’d bench press 500 pounds before his next round of chemo to demonstrate the power that can come from the combined power of one’s faith and mindset and the cancer would disappear.

When Jordan was in the hospital, he had hundreds of people go to visit him. He recalls about the visits, “I was just blown away by all these people. And a lot of them I didn’t know or couldn’t remember. They were sharing stories with me about how they’d crossed paths with me sometime in my life. Whether it was some words of wisdom that I gave them or helped them pay a bill or took them to dinner or something, they felt indebted to come pay it back to me. And I felt like if God decides to take me now, I’m okay with that, but I’m not ready just yet.” He knew he’d done a lot of good in the world helping people but felt that his work wasn’t finished yet. 

Jordan continued with his chemotherapy treatment for 4 months. But he decided that he wanted to do some shopping for gifts before Christmas. Jordan wore a mask and bundled up for his shopping outing, but another test hit Jordan on December 27 when he woke up with a 107-degree temperature and was partially blind. He collapsed at the hospital and went through enduring pneumonia, heart failure, kidney failure, liver failure, blood clots, fluid-filled and blood-filled lungs, bloodline infections, full septic shock, and a 24-day induced coma. Jordan’s body and spirit weren’t ready to surrender, however. He woke up, and his doctors told him it could take up to a month to start walking again. Jordan blew away that estimate and was walking in two days. His doctors also told him it could take up to a year for his full recovery, but he gained 50 pounds in six weeks and was unrecognizable to hospital ICU staff due to his drastic health change.

While in the hospital, Jordan made it part of his routine to help others. He recalls of his hospital stays,
“I made it a point to not just survive adversity, because I’m someone who thrives against adversity. People tell me I’m a cancer survivor, but I say that I’m a cancer killer and that I rise above it. You can’t control what happens to you in life, but you can control how you react. It sounds cliche, but how many people actually hear it? How many people actually adopt it? How many people actually apply it and see the results of it? I’m a walking testament to that.” Jordan decided to help other people in the hospital who didn’t have visitors to see them. Hospital staff called him affectionately “Dr. Real Deal or No Deal.” The doctors would call him when people were having a hard time or felt like giving up. He’d visit several people each day and sit with them. And Jordan would learn about them or tell them stories from his life. “Whether I was preaching to them, laughing, doing some cardio down the hallways, or just getting them moving and grooving and feeling good about themselves; it was so magical to see all these people just start living. They stopped saying, ‘Why me’ and started adopting the ‘Why not me?’” Hospital staff brought in creative items where the staff and patients created inspirational artwork with motivational sayings that made an immediate impact and has continued to do so over the years. The huge pieces of artwork were transferred to the new oncology unit in a new building and are still making an impact on patients and their families today. 

As for advice for other cancer patients, Jordan shares, “I don’t allow myself to stress. I don’t allow myself to create anxiety. And I don’t allow myself to get depressed. If I feel anything trying to creep up on me, I find these different things to do to get myself through and grow. Whether it’s going out and getting some sun or going out and feeding the ducks and meditating by a pond or going for a walk knowing that when the body moves the brain grooves or putting on some music or lifting some weights at the gym, knowing how to control your mindset is key. You have to know that you’re in control, and you have to act like the change you want has already happened. When you’re feeling bad, just punch it in the mouth to get better. How much have you ever pushed yourself to the limit? You become a little bit stronger and a little bit wiser from pushing yourself. Life is all about perspective in any situation we go through.”

Jordan has come to many realizations over the span of his life and time with cancer. He believes in changing your environment to what you need. “When you’re struck with adversity and things like cancer, it’s okay to rest, but there’s still more work to be done. This is your story and the card that you’ve been dealt to serve a bigger purpose. If the hospital food isn’t cutting it, find a friend who can cook. If you’ve got a negative person around you, find someone who’s joyful. If that person who’s hugging you isn’t a good hugger, get a good hugger. If you don’t like that background music, change the music. This is your world, and you become what you surround yourself with. You need to just focus on being the best version of you. If you stop chasing and start seeing cancer as the gift that it may possibly be, then you’ll learn how to cooperate and to ultimately become just an amazing masterpiece and things for others to witness.”

Through his work, Jordan coaches people one on one – emotionally, mentally, physically, spiritually, financially – whatever the case may be. And for those facing a cancer diagnosis, he poses this question, “Do you want to live, or do you want to die? I want to live. You die only once. You live every day. I’m going to live and enjoy blessings, prosperity, and goodness in helping others.”

Thyroid Cancer Patient Profile: Beena Patel

As Beena Patel shares the story of her thyroid cancer journey and path to becoming an integrative medicine professional personified, it becomes clear that she’s making a positive impact to many patients and to those seeking wellness. In her professional life, she works as an oncology physician assistant, holistic life & health coach, yoga teacher, and energy healer. Beena shares the initial feeling that sparked her passion for patient empowerment, “I felt like I’m meant to do this. And I had even more of a fire in me, like I’m going to help people, and I’m going to help cancer patients feel empowered over their care.” 

Beena’s cancer journey began when she was 21 and in Montreal celebrating post-college accomplishments with a group of friends. They were mainly driving to festivities and eating a lot of food. She felt like she must have gained 5 pounds, but found that she had actually lost 5 pounds after she was back home. She was in physician assistant school at the time and told her doctor about her weight loss, which prompted her to check her neck and thyroid. Her doctor said her thyroid felt palpable and decided to do further hormone testing, radiological testing, and an ultrasound. Something abnormal was found in the testing, which was followed up with a biopsy that confirmed diagnosis of thyroid cancer. Beena was shocked with her diagnosis at such a young age and felt unsettled with the timing for it to happen when she had just started physician assistant training.

Traveling back and forth between her doctor’s office and the hospital felt overwhelming for Beena. “It was a lot for a young woman and a woman of color, to see not only how painful it is to go through any type of diagnosis, let alone cancer, and having to feel so alone throughout the process. Also seeing how people do pass you off when you’re a young woman of color, and I would say a woman of any age, but I think women who are younger, trying to navigate life, and figuring out your path. And then you get a diagnosis and you’re like, ‘No one understands me,’ so it was a lot to handle.”

Beena’s thyroid cancer treatment included a total thyroidectomy to remove her entire thyroid gland. Her care team also tested some lymph nodes at that time, but didn’t find anything concerning. “I didn’t get radioactive iodine, but then three years later, I did have a mild recurrence, so they did do radioactive iodine at that time.” Beena is now doing well and takes thyroid replacement therapy to maintain her metabolism and other thyroid-related processes.

Empowering herself has been a vital piece of Beena’s patient journey. She felt like her first doctor on her cancer journey wasn’t really listening to her, so she found a different doctor. “You have to find the right fit. It’s like dating. Don’t settle until you feel like you not only have the scientific background, but the right doctor who has clinical expertise, who you feel has clinical knowledge and compassion, as well as the time to spend with you and to educate you as a patient. Your doctor should make you feel seen, heard, and understood. It’s a relationship that you’re creating with this provider, so it’s very important to find a good fit.” She also feels patient resources like NIH.gov, clinicaltrials.gov, and the Patient Empowerment Network (PEN) website are valuable in the process of patient education and empowerment.

Beena had to start physician assistant school a second time after her cancer became too disruptive, and she felt she became empowered at that time. She went through a difficult breakup about 6 months earlier and was feeling disconnected from her body. Yoga and meditation helped her cope with stress, but she was looking for something deeper. She found a Reiki practitioner in New York City and received a treatment for the first time. “I just felt like I transcended everything that I’d gone through in the last decade. I just felt good and calm and at peace. And so when I felt that, I knew I had to share that with patients, I knew there was something deeper.” After she was at Columbia University Irving Cancer Research Center for a few months, Beena had already started doing patient consultations with integrative medicine, and her patients were very responsive to the consultations.

 “Many patients aren’t aware of Reiki, or they don’t know that yoga is available to them, but I started doing consultations to educate them. They were willing to try something new, since we weren’t replacing the medication.” Beena realized that she had a gift with patients as she was able to bring peace when they were stressed or had a panicked look on their face. She also recalls during her cancer journey that a medical fellow actually lied to her about the diagnosis and seemed uncomfortable in telling Beena the actual diagnosis. “Some people don’t know how to be comfortable with emotions, because they weren’t taught emotional intelligence. And so I learned that when I would go into the room with a patient, I would hold it together even when I didn’t know what I was doing.”

Beena would request that someone else accompany her in the room, like another provider who was more experienced. She would maintain her calmness and return to her center, and she attributed that ability to her daily meditation practice. She would tell the patient to take a deep breath, and she could watch their heart rate decreasing in real time. The patients would become calmer. “So even if there was an emergency, I could hold it until the intensive care unit (ICU) or someone from another department came in to check on the patient, and it’s like we have that power to help people just by being emotionally and mentally balanced.” And when Beena went to Memorial Sloan Kettering Cancer Center, they were more supportive of integrative medicine. “Music therapists would come, and they had yoga nidra (yogic or psychic sleep) at nighttime and Reiki. They had a patient population that was more aware and educated about integrative medicine, so they would ask for it.”

Patients would request to do a technique like yoga or breath work before they went for radiation treatment in the hopes that it could eliminate the need for anxiety medication. “Sometimes it would work and other times it wouldn’t. Some would pass out at their radiation treatment. So we adjusted things to a combination of breath work and meditation and decreased the anxiety medication dosage. Patients loved having that ability to manage their care from an empowered standpoint.” Beena would also run the integrative medication combination by the care team to keep them informed about the patient.

Integrative medicine is at Beena’s core of medical values that use a mixture of Western and Eastern medicine techniques. She helps patients understand the energetic root of the issues that are happening in the body. “I do think in the future there could be more Eastern philosophies, I think we could get back to energy healing and understanding root causes, the ancient medicine that was passed on from our ancestors.”

Beena is grateful that she is feeling healthy and for the different ways that she’s able to help patients. As for her other advice for cancer patients, she recommends advocating for yourself for the sake of your health. “Be open to ask for support. It’s your body and your health. And be open to us for support, be open to ask when you don’t understand something, and let us know about any supplements that you take. If you feel like you don’t have a good relationship with your healthcare team, be willing to do empowered research and go to the person who you feel comfortable with and who you feel understands you.” 

My Waldenström Macroglobulinemia, Miracle Number Three

Dear Fellow Cancer Patient,

As I believe in universal love for ALL, I’m reaching out to you, whether we have met or not, to invite you to join me in embracing the concept of medical miracles no matter what kind of cancer you have.

I do so because in January 2023 I experienced my third medical miracle since being diagnosed with Waldenström macroglobulinemia (WM) in August 2012, an extremely rare and currently incurable lymphoma.

The mission of Patient Empowerment Network (PEN) to support and educate patients with all cancers has an exceptional impact. It is an honor to cooperate with PEN, and my dream is to bring you hope through my own medical successes through the past 10 years. (*Please see footnote for a brief history of my story.)

It is my tremendous good fortune to be in the constant care of my world-renowned WM specialists/hematologists at the Bing Center for Waldenström’s Macroglobulinemia, Dana-Farber Cancer Institute/Harvard Medical School in Boston, Mass. since March 2013. Also, my oncologist at Virginia Cancer Specialists who has extremely high credentials in hematological malignancies, diagnosed me in 2012, and treated me immediately with what was then the flagship chemotherapy for WM.

In September 2022, I experienced the most aggressive outbreak ever of my Waldenström. A lymph node was so enlarged, I discovered it myself. One week later, my feet were unbelievably swollen, which I discovered when I couldn’t put my shoes on. I immediately reached out to the Bing Center’s Director, Dr. Steven Treon. Within the same hour, he called my Virginia oncologist and recommended a PET scan and biopsy for me. The next morning at 10 am, less than 24 hours later, I was examined in Virginia by my oncologist, and he ordered both tests on the spot.

The results were extremely concerning and put fear in my heart again as is the case with any cancer diagnosis. Enlarged lymph nodes were very widespread throughout my body, and there was increased activity in my entire bone marrow throughout my skeleton from head to toe.

My two Bing Center for WM doctors’ recommendation of Benda-R [bendamustine (Treanda) and rituximab (Rituxan)], for chemotherapy was agreed to by all upon consultation with my Virginia oncologist.

For three months, I couldn’t walk outside of my house and only went to medical appointments with my oncologist every week and chemotherapy treatments for two days each month. Tony, my husband, had to drive me there and take me by wheelchair down the hall to his office. I was also very frail due to losing 15 pounds, making my weight 90 pounds.

During this very challenging time, my brother Mike, a two-time survivor of non-Hodgkin lymphoma (NHL), supported me constantly and even called me from Egypt and Panama on his cruises there, as he understands too well how trying it is to be back in treatment for cancer. My dear friends also offered wonderful daily encouragement with special contact to lift my spirits.

After three months of chemotherapy, my follow-up PET scan in January 2023, showed “complete interval resolution of the abnormal marrow and nodal activity evident on the previous study.” Although I’m not an expert, the comparison of the images of my body between September and January was remarkable. In the Bing Center for Waldenström’s clinical review of its patients led by my doctors and joined by their colleagues from three Harvard hospitals in Boston, my PET scan results were examined, and one more round of chemotherapy was unanimously recommended to complete my treatment.

My third medical miracle has arrived! According to Dr. Steven Treon, Director of the Bing Center for Waldenström’s Macroglobulinemia in Boston, “From all evidence so far, it appears you may be in complete remission!” My deepest gratitude to him, Dr. Jorge Castillo, Clinical Director of the Bing Center, and my Virginia oncologist for their cooperative spirit with each other on my behalf and extraordinary attention in providing life-saving treatment to me is beyond words. In July 2023, a bone marrow biopsy and CT scans at the Bing Center for WM in Boston are planned to confirm my response.

Yet, again, I am celebrating the gift of life with Tony who has been a saint to me through countless years of ups and downs with experiences as a WM patient. He has been by my side and done absolutely everything possible to love and support me endlessly. For care partners, be sure to get the support you deserve for yourself, as cancer in your world is very challenging for you too.

Amazingly, although I couldn’t swim for seven months, I exceeded my own goal and swam for 40 minutes during my first time back at a pool in my fight to regain strength and normalcy. And I can now walk for 15 minutes outside every day, too, as my swollen feet have resolved. Tony even took me to a favorite place for my March 2023 birthday, the first time we’ve gone to a restaurant since August 2022.

As I mentioned earlier, in sharing my medical miracles with you, my dream is to give you hope for your own cancer treatments – and success. I encourage you to stay in contact with family and friends, be a proactive advocate for yourself, read PEN’s news and that of other relevant cancer support organizations, follow your own status, and reach out to your oncologist immediately with concerns or new symptoms, see a specialist for your specific cancer if possible or have your oncologist consult with one. Stay hopeful and realize that profoundly sophisticated advancements in medical research and science are progressing at a phenomenal pace for all cancers and continue forward with unwavering commitment by medical experts across the globe. I have benefited from this greatly in my own experiences in the past 10 years and may this be truly inspiring for you too!

Wishing you all the best in every way!

Sincerely, Lu Kleppinger


Footnote:

* Brief history…In August of 2012, being highly symptomatic, I was diagnosed with Waldenström macroglobulinemia (WM), One week later, I started chemotherapy provided by my Virginia oncologist. In March 2013, I became a patient of Dr. Steven Treon, Director of the Bing Center for WM/DFCI/Harvard Medical School in Boston and he extended my chemotherapy for an extra year. After 18 months and 50 infusions, it was an extraordinary success and gave me five years of being under control without treatment. In 2014, my hematologist, Dr. Jorge Castillo, Clinical Director at the Bing Center, said “You are doing really, really, great! Go live and have fun!” I did just that.

In 2019, my WM flared up a second time, and Dr. Castillo placed me on ibrutinib (Imbruvica), a daily pill for life. The results were incredible within a month, and my WM was under control yet again. I lived a normal life for three years, feeling cancer-free.

Original Stories of Hope from the first two episodes can be found at Lymphoma.org and IWMF.com.

Pancreatic Cancer Patient Profile: Marissa Smith

Marissa Smith’s pancreatic cancer journey is anything but typical. For starters, she was 38 years old and working as a neonatal intensive care unit (NICU) nurse when she was diagnosed. She then found out that her cancer involved a neuroendocrine tumor on her pancreas, which is unusual when adenocarcinoma is more common with the pancreas. But even if her story is unusual, Marissa is happy to share her cancer story in case others can benefit from what she learned during her journey.

When Marissa reflects about the beginning of her cancer story, the first symptom she experienced was a sour stomach. “Nothing was helping. I decided to eat, and that made me feel worse. I had pain in my upper abdomen, chills, and sweating. My friends who were nurse practitioners thought that my symptoms sounded like gallstones.” Married with two young children, she and her husband didn’t have any family who lived in their area, so all four of them had to go to the Emergency Room. They were fortunate to have friends who could take their kids to stay with them for the night.  

Marissa’s journey progressed pretty rapidly from there. She received an ultrasound, a CT scan, and then was informed there was a tumor with well-defined edges on her pancreas. The community hospital then sent her to a hospital in the city to get a biopsy of the tumor. A week later, she met with the surgical oncologist to find out the type of tumor and her treatment plan. “It was a golf ball-sized pancreatic neuroendocrine tumor. He said it was very slow-growing and that I’d probably had it for a long period of time. So I might have passed a gallstone, and it’s quite likely that my tumor was found out of sheer luck.” Her doctor suggested the Whipple procedure to remove the head of her pancreas, part of her stomach, part of her small bowel, gallbladder, and bile duct. She also received a PET scan prior to surgery to confirm there weren’t any additional tumors. 

Following Marissa’s surgery, her recovery also wasn’t typical. “I had what we call ‘nurse curse,’ which is every complication that’s imaginable. My stomach was getting very bloated, and I was in pain. Pancreatic fluid was leaking into my abdomen.” She had multiple scans and tests and two procedures where they removed the fluid from her abdomen and then analyzed the fluid. Her hemoglobin level dropped, her care team had to reinstall a tube, and she experienced a gastrointestinal (GI) bleed. After the GI bleed, Marissa received a blood transfusion, and her team later informed her that they almost had to put her in the intensive care unit. “Then when I was eating after I got home, and my nurse practitioner friend could see that my food was coming back out of my drain that they put in. The connection between the stomach and my small bowel was leaking.” Her care team wanted to pull her drain out and send her home, but Marissa insisted on staying for observation for 24 hours with all the complications that she’d already experienced.

Reflecting back on her recovery, Marissa says, “I feel I was fortunate to be in good physical condition just prior to my diagnosis. I lost a lot of muscle mass while I was in the hospital, but I would have had a more difficult time if I had been in worse physical condition before my diagnosis.” 

Marissa got involved with patient advocacy groups after she completed treatment and returned to work. She didn’t do online research after her diagnosis, since her doctor was pretty straightforward with her treatment plan. The COVID-19 pandemic began right after she returned to work, so unfortunately there were no in-person support groups.  

Throughout the process, there were many lessons learned that she wants to share. “Educating yourself is so important. Trust your doctors. Understand what they’re saying or ask questions if you don’t understand. I think your outlook is very important. Understand what your goals are for your life and how you want to live your life.” Patients and their loved ones need to weigh the different factors and goals for during and after treatment. Some patients might choose quality over quantity in their cancer journey, and it’s a personal decision for each person.

Marissa was in awe of her husband and kids. “My kids have been amazing. My team thought I’d be in the hospital for a week for treatment, but it ended up being a month. I went in before Thanksgiving and didn’t come home until just before Christmas.” She returned to work in February, and then the COVID-19 pandemic started. “Our kids were in preschool and 1st grade at that time. That was a horrible year for everyone, but our kids were just incredible. My family is awesome.” At the time, Marissa was in a doctoral program, working a weekend night shift, and hybrid homeschooling our kids. In early 2021, she took a leave of absence from school, went down to two 12-hour night shifts, and was with their kids for their remote school time in the hybrid model. “I ended up working as a substitute nurse in our school district when we switched back to full in-person learning, and I’m now working as a nurse in our home district with our oldest child in my building. I love it, but I took a 50 percent pay cut moving from the hospital to a public school, but my work-life balance is worth it.” She and her family especially enjoy hiking and the outdoors at Adirondack State Park and Lake Placid. They’ve simplified their work lives to enjoy more time with their kids.

Marissa has some other advice for patients and loved ones, “I know it’s hard for some people to ask for help, but ask for help when you need it.” Her family had a meal train that was delivered to a cooler on their front porch so that friends could leave food without intruding at all. Friends took their kids to their activities. Marissa saw a therapist and is still going to process all her feelings about her cancer experience.

Even though going through cancer was difficult, Marissa is so grateful for her family and friends who supported her through everything. She also stresses the importance of self-advocacy. “It’s your body, and you want to make sure you understand what the specialists are telling you. Make sure that you’re making an educated decision for yourself and that you have all the information you need to make the right decision for you and your family.”

30-Year Acute Myeloid Leukemia Survivor Shares His Journey

30-Year Acute Myeloid Leukemia Survivor Shares His Journey from Patient Empowerment Network on Vimeo.

What might acute myeloid leukemia (AML) patients experience for symptoms, treatment, and coping with AML? AML patient and Empowerment Lead Art Flatau shares the experience of his AML journey from diagnosis, through treatment and AML survival, and advancements in AML treatments.

Art also shares his empowerment advice for patients and care partners to ensure optimal care and how he has found a sense of purpose in patient advocacy efforts.

See More from [ACT]IVATED AML

Related Resources:

Empowered AML Patient: Ask the AML Expert

Empowered AML Patient: Ask the AML Expert 

How an AML Survivor’s Resilience Saved Her Life

How an AML Survivor’s Resilience Saved Her Life 

Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial

Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial 


Transcript:

My name is Art, and I live in Austin, Texas. In 1992, I was 31 and married with two young children. I was in graduate school and working full-time. For a couple weeks, I had been feeling tired and had been running a low-grade fever. I also had a lot of bruises, probably because I was playing rugby at the time. I thought the fatigue was because I was overworked and getting  too little sleep.

On Saturday, I had a rugby game but was too tired to play more than a few minutes. The next day, I was too tired to do much. My wife and I decided that I would go to the doctor on Monday. 

Monday morning, I woke, and there was blood on my pillow as my gums were bleeding. My wife wanted to take me to the ER, but I convinced her to just call our doctor. I went to the doctor later that morning. She noted my symptoms, did a quick exam, and sent me for blood work. After lunch, she called and said I needed to go to the hospital and see a hematologist. I knew I was in trouble.

We talked to the doctor and he said, “We have to see what kind of leukemia you have.” What a shock.  I knew that I was sick with something I had not had before. The fact that it was cancer was a shock. I didn’t know that there were different types of leukemia but soon found out that I had acute myeloid leukemia (AML).

That evening, I received platelets and red blood transfusions. The next morning, I had a bone marrow biopsy, more platelets, and surgery to put in a central line. That afternoon, less than 24 hours after hearing the word leukemia in reference to me, I started chemotherapy. This was all overwhelming. We had no way to understand what our options were or to get a second opinion.

Three-and-a-half weeks later, I got out of the hospital with no hair, 25 pounds lighter, a lot weaker but alive. I had more chemotherapy in the next few weeks and more hospitalizations. A few months later, I was finished with chemo. I regained some strength, regrew my hair, and tried to get my life back to normal.

In early 1993, about 9 months after being diagnosed, we got another shock, I had relapsed. I needed to have a bone marrow transplant. Although we had a little time, a few days to figure out where to go for a transplant, we were again struggling to understand the process. We were also struggling to figure out how to move to Dallas for three more months for the transplant. The transplant was a long grind, a month or so in the hospital, a couple of months of going to the outpatient clinic two to three times a week, but we made it through. 

Now, 30 years later, I’m still around. My children graduated from high school, college, and graduate school and have successful careers. My wife and I are empty-nesters.  I am still working but hoping to retire in a few years. Although I consider myself very lucky to have survived and have had relatively few side effects, I do have some side effects to deal with, including low testosterone.

Some things that I’ve learned during my AML journey include: 

  • AML is a rare disease: The good news is that over the last several years a lot of new treatments have been discovered for AML. These new treatments are leading to more people surviving AML. However, these new treatments are evolving rapidly. It is important to find a cancer center and doctors who treat a lot of patients with leukemia. 
  • Consider volunteering: Advocacy work is an excellent way to help yourself and to support other patients and continued research efforts.
  • If something doesn’t feel right with your health, advocate for yourself and ask for further testing.

These actions (for me) are key to staying on my path to empowerment.

Share Your Feedback About [ACT]IVATED AML

Patient Profile: Eva Grayzel

When stage IV squamous cell carcinoma survivor Eva Grayzel shares her story, you can tell that she has a zeal for life. She survived  oral cancer and works as a performance artist and speaker. Diagnosed at age 33, she was told that she had a 15 percent chance of survival. Eva’s journey started with a sore on the side of her tongue that wouldn’t resolve .

About eight weeks after noticing the sore, Eva saw an oral surgeon who examined her tongue. She complained about the pain, and her oral surgeon said, “if it bothers you so much, we can take it off.” She agreed. Two days later, Eva felt fine, and two weeks later, she received an assuring call from the surgeon’s office to inform her that her biopsy was negative. She was confused and wondered if there was a mistake of some sort. “I literally thought, ‘What on earth could they be looking for in a biopsy of the tongue?’ The receptionist told Eva she had nothing to worry about. Two years passed, and she had no obvious symptoms. But early stage oral cancer often goes without symptoms. Two years later, another sore developed on her tongue over the previous biopsy site. 

Eva returned to the doctor after eight weeks, and they diagnosed her with hyperkeratosis, which is basically a callus. “They treated me for trauma for nine months; they had my teeth shaved down; they gave me gels and rinses. It was a nightmare.” Her doctors also told her that the amount of speaking in her work exacerbated her symptoms, and she regrets that she didn’t know more about oral cancer at that time. Eventually, a second opinion brought her the correct diagnosis of squamous cell carcinoma, which was treated with surgery and radiation and followed up with reconstructive surgeries.

Throughout her cancer journey, Eva has endured a lot. She had one-third of her tongue removed, a partial tongue reconstruction from arm and leg tissue, a modified radical neck dissection, and a maximum dose of radiation therapy. “It was most definitely the hardest thing I’ve ever been through during treatment. I planned my funeral and didn’t think I was going to survive.” Through an extraordinarily successful treatment plan, Eva not only survived but also regained her ability to speak clearly. With a second chance at life, she couldn’t let the same thing happen to someone else.

Radiation to the head and neck is the most difficult part of the body to tolerate therapy. “What I learned is that you’re stronger than you think you are. You have more strength than you know you do. I really didn’t think I could get through this, and somehow I pulled through.”

Eva has learned some things and has some advice for survivors. “There’s always hope, and hope is different to different people. For some it might be no pain, for others it might be living six months to make it to their kid’s graduation or wedding. Only you know what’s right for you.” 

She has self-care advice for care partners as well, “You need to take care of yourselves so that you are renewed, refreshed, and at your best to take care of the person you’re caring for. When you’re tired, rest. When you need a break, take it. Go out for lunch with a friend or take a walk. Do what you need to do for yourself, so you can be the best caregiver you can be.” 

For family and friends who want to help but don’t know what to say, Eva advises asking yes/no questions: “I’m making chicken for dinner, can I make you some? I’m taking the children to the park, can I take yours? I’m going to the market, can I pick up anything for you” On a visit, empower the patient by asking them how they want to spend the time, instead of making the visit about your agenda. Bring with you what you think they may enjoy; polish their nails, massage their feet, read the sermon of the week, bring a game, a joke book….

Eva has lessons learned about oral health. “I would say as an oral cancer survivor, I’ve learned a lot about oral health. And this goes for all cancer survivors, the health of your mouth is the window to the health of your full body. So, if your body is fighting cancer and even recovering from treatment, keeping your mouth in its cleanest state will serve you well.” 

Even for those who have adult children, Eva is an advocate for telling your kids the truth. Patients might think grown children are too busy with their own responsibilities, but she advises talking to them about your cancer, because it’s an opportunity to teach them about what it means to be a family. If you choose to hide a diagnosis from children, you are promoting secrecy and dishonesty, you risk a lot of anger if they find out you withheld the information, and mostly, it’s an opportunity to teach children how to overcome life’s challenges.  Life is in balance. When tragedy strikes, notice the opposing forces of gratitude and hope.  

Every cancer survivor should get an oral cancer screening at their dental checkup. If you don’t know whether you receive a screening, visit sixstepscreening.org. “Or simply tell your dentist, ‘I want an oral cancer screening. It’s the standard of care, the American Dental Association says that everybody should be getting the screening at least once a year at a dental checkup.’”

After surgery and reconstruction, Eva can swallow normally but can’t feel or taste in the area where her cancer was. She can only chew on the right side of her mouth but still feels grateful. “The body is amazing. It adapts in a phenomenal way, so whatever you lose, however your body changes, it will learn to adapt to work for you. It takes time, it takes patience. But there’s hope for a really good life after cancer, but the mind is part of it, and also taking good care of yourself is really important so that you can be the best person you can be.”

Eva’s children were 5 and 7 when she endured treatment for cancer. To help children like her own cope with a diagnosis in the family,  she wrote two children’s books to promote dialogue between adults and children and to help them cope with their feelings and fears. 

Eva speaks to oral cancer survivors internationally and provides hope. If you know someone who has been recently diagnosed, don’t hesitate to reach out to Eva: eva@evagrayzel.com

MPN Patient and Care Partner Share Clinical Trial Experience

MPN Patient and Care Partner Share Clinical Trial Experience from Patient Empowerment Network on Vimeo.

MPN Empowerment Leads Jeff and Summer share their experience participating in a COVID-19 clinical trial. Jeff believes that if you get an opportunity to participate in a clinical trial, you should take it. There are so many new medications in the pipeline for MPNs and you can help change the standard of care for future patients.  

See More from Jeff & Summer

Transcript

Jeff:

Hi, I’m Jeff. 

Summer:

Hi, I’m Summer and hi, I’m Zelda. 

Jeff: And we’re your Network Empowerment Leads for the Patient Empowerment Network and we’re the leads for the myelofibrosis section, which Summer is a myelofibrosis patient. And we’re here today to talk to you about clinical trials. And we’ve had some experience, but what we’re going to tell you about today is not a trial that deals with myelofibrosis. But our experience in the COVID-19 vaccine trial for Moderna at University of California San Diego. And tell us about how it started, Summer. 

Summer: Well, I’ve never been in a trial test before, and neither have Jeff. We went to UCSD, to where it’s conducted, and they were very friendly, very nice, very encouraging. But the strange thing, one of the things is I thought there’d be a huge waiting room. And they took us right in, and the whole time we were there, I didn’t see anyone other than the staff. So, I went in one of the rooms, and various doctors and nurses and assistants came in to take blood, to take my temperature, to ask me medical questions, things like that. The whole thing took probably about an hour and a half, and they were very encouraging. And then the last person that came in said, well, I’ll be back in a few minutes, and I’ll bring the vaccine in. So, I thought, oh, I guess I made it. But then when they came in, he said, no, you consulted with another doctor, because I have myelofibrosis that could slant the test. So, I wasn’t able to sign up and help people. But I do remember another thing about COVID. I was in the first group, because I’m older and have a disease, to get the vaccine. And I remember it was at Petco Park in San Diego, and there were so many people there that people had to park blocks from there. And that’s fine. Walking is no big deal. There were a lot of really old people that could barely walk, and they were going, I’ll never forget that. 

And there was one woman that was very overweight. She was in a walker. The poor old thing could hardly walk. So, I remember I walked behind her the whole time, because I thought I can call for help if anything happens. But I still have that picture. And here’s Jeff’s view. 

 Jeff:

So, I went up with Summer to sign up for the vaccine test as well with UCSD. We thought we could make a difference and help. So, I went through the same, they gave everybody the same thing. Different doctors and nurses and assistants came in. They took your blood. They took your medical history and so forth. And then they went out of the room and left me there. And they came back in, just like Summer. And for me, they came back in with a hypodermic needle filled with vaccine or placebo. And they gave me the shot. And of course, they don’t tell you whether you had the placebo or the vaccine. And they sent me home. But before I went home, they had me load this little app onto my phone. And I have to fill it out every Sunday. I’ve been doing that now for about two and a half years, I guess. Whether you just got a couple of questions and you submit it. It’s part of their program. And they also periodically… I have to come back for other appointments. And they actually, of course, made a second appointment. So, I got the second shot in the Moderna combination. And they kept, each time I came back, they’d take blood. They wanted to see how the blood was forming antibodies, I guess. And so, I kept coming back. And they didn’t tell you what was happening until finally, I got an email that said the doctor was going to have a Zoom presentation or a web presentation. And basically, he came on and he gave the statistics that they had collected and said that the vaccine seemed to be working very well which was really nice to see. But we stayed in the… We would still stay with them because they wanted to see how long it lasted. And whether your antibodies would last. 

 So, I’ve been still going regularly. Eventually they gave us the third shot, the booster shot. And I haven’t had any word whether I’m supposed to have the next booster shot. I have an appointment with them in about two weeks to go. They call you back so they can check your blood. And presumably I might get another vaccine. So, it was a very interesting experience. And like Summer mentioned, I didn’t hardly ever see any people there except the staff. The place was clean. They were very, very friendly. It seemed to be well organized and run. And we felt happy. I felt happy to be part of the solution for COVID anyway. And that’s my experience. 

So, our thought to you all was if you get an opportunity to participate in a trial, take it. Especially for those of you with myelofibrosis, there’s a lot of medicines coming down the pipe. They may need some people to be in trials. If you meet the requirements, go ahead and take it. It’s a worthwhile experience. And you can maybe be helping medicine. That’s it for this week. I’m Jeff. 

Summer:

I’m Summer. I’m Zelda. 

Jeff:

See you next time. 

Summer:

Bye. 

A Patient Profile: My Aunt Jan

In early March 2020, just days before the world shut down, my mother stepped out of her sister’s Hospice room. My mother, the oldest of three, and her other sister, the youngest of three, had spent the last couple weeks by their middle sister’s side as she used every last ounce of strength she had to fight the cancer that had so deeply taken hold of her body. That day in March, though, my mother left early so she could meet me and my three children to go shoe shopping. She told her sister goodbye and explained she was going to spend some time with her grandchildren. She’d barely left the parking lot when her youngest sister called. A few moments after my mother had left the room, my aunt breathed her last breath.

My Aunt Jan, at 72, was too young, too healthy, and too disciplined to die from cancer. She had devoted much of her life to staying physically fit and consuming only the healthiest diet. She ate organic foods long before there were grocery stores selling them. She belonged to co-ops and sought out health food stores and juiced her vegetables when most people had never heard of those things. The rest of us were enjoying the processed food revolution that came about in the 1980s while Jan was biking to the health food store to get some bulk, organic grains. She stayed lean her entire life and enjoyed showing off her muscles. Her favorite way to spend time with anyone was by taking long walks, preferably on the beach on Sanibel Island, Florida, where I grew up and where she was able to retire. She was a music professor. A PhD. She was widely respected in her field for her knowledge, her expertise, and her own talents at the piano. She was extremely passionate about practicing the piano. She never missed practicing. She loved the classical composers: Bach, Beethoven, and Chopin. She knew them all. She taught them all. She played them all. She was so excited about classical music that I am sure her students couldn’t help but pick up some of that enthusiasm just by being in the room with her.

Jan never married or had kids. She had pets. First a dog named Bear who I think she mourned until the day she died. Later she had cats who found their way into her life in a variety of ways. She enjoyed their company, and they never complained when she practiced the piano for hours at a time, as my brother and I had as kids when she lived with us for a short time. Her practice interfered with our afternoon cartoons, and we let her know it, but she never relented. Practicing took priority over her niece and nephew. Practicing took priority over everything. I imagine it was her go-to escape mechanism. It must have been her therapy. She would have needed an outlet as the middle child in her family. She absolutely had middle child syndrome. She often recalled how my mother, the oldest, got to go out of state for college, while she got stuck going in state at the local school. And, of course, she and my mother both had stories about how their youngest sister, the baby of the family by a good seven years, got to do whatever she pleased. All families have similar stories, but Jan, I think, really felt the burden of being a middle child. My grandmother was not the most supportive of personalities and could be quite soul crushing when she put her mind to it, and she put her mind to it a lot. When my mother graduated from law school as a single mom with two kids in toe, my grandmother told her, “Well, we didn’t think you could do it.” She had similar zingers for all her daughters (and her granddaughter) for just about every important life event. None of us was unscathed, and Jan came out of that incredibly stubborn and with an insatiable drive to achieve, to succeed, and to prove herself. She did all those things, but I don’t think they were ever enough. I’m not sure anything ever would have been enough.

When Jan finally retired to Sanibel, which had been one of her life goals, she didn’t really retire. She began playing the organ and became involved in the music program at church. She wrote articles for the local paper, she biked all over the island, she walked the beach, she continued to teach college classes online. She just kept on achieving and never slowed down until things came to a screeching halt. Our first indication came when she had to go to the emergency room. It was then we found out that she was sick. Really sick. She had known for a while but hadn’t told any of us. She had been diagnosed with cancer — uterine we think, but it was never really made clear — about a year prior, and she ignored the recommended treatment. Instead, she sought alternative healing. It didn’t work, and she finally told her sisters what was going on and agreed to chemotherapy. But that is all she agreed to.

Even though I had been writing for Patient Empowerment Network (PEN) for several years and knew about the resources they offered, she was not interested. She was not interested in the information I could share with her about the latest studies and research. She was not interested in the many programs PEN has that help guide patients and their care partners through the process of diagnosis and treatment and the best ways to be an empowered patient. She was so stubborn. She had done things her own way her entire life and been pretty successful, so she was going to do cancer her way, too. I can’t say as I blame her. She had only always relied on herself, and she really believed that she had done all the things to set herself up to beat cancer her way. On paper she really had. Fit, healthy, ideal weight, superfoods, no processed foods. She did all the things. The only thing she didn’t do was embrace the resources she would need to become an empowered patient and to partner with caregivers to advocate on her behalf when necessary. She tried to go it alone, but she didn’t have to. PEN had all the resources she needed.

Had she embraced an organization like PEN, it’s impossible to say if her outcome would have been different. Some people just don’t survive cancer no matter what the circumstances, and Jan’s circumstances weren’t great. Not only had she delayed treatment, but there was poor communication among doctors, a botched surgery, and a generic treatment plan that didn’t seem to be tailored to her or her cancer. The treatment didn’t work and a lot of trips to the emergency room later she found herself in Hospice with the “thoughts and prayers” of her doctor sent via his nurse. Even in Hospice, barely eating, barely awake, I could tell she was still determined to beat the cancer. She just couldn’t seem to accept that it had been stronger than she. Looking back, I still wish she had decided to access the many resources available, either through PEN or another organization, but I do also see why she felt the need to rely only on herself.

Now, more than two years later, my mother has cancer. Lung cancer. Adeno carcinoma. It’s advanced, but very treatable and we are focusing on the very treatable portion of the diagnosis. A lung cancer diagnosis isn’t the death sentence that it was in 1992 when her father died from it. I’m very thankful about that. In a couple days from my writing this, I will go with her to her first treatment at the research hospital where my aunt refused to get treatment. I may still be a little in shock from her diagnosis, but I have already been comforted by the knowledge I’ve gained over the past several years while writing for PEN. My mom and I have already had discussions about some of the treatments I’ve written about, and she too seems to be comforted in all that she’s learned through PEN. She’s very supportive and a top-notch proofreader who knows I love to submit clean copy, so she’s read everything I’ve written at least once. She also took a dive into the PEN website on her own and found the section that tells you the questions to ask your care team. We’ve both learned so much through PEN that we feel pretty prepared to face this. I mean, nobody wants to get cancer. Nobody wants to go through chemotherapy, so we are overwhelmed and scared, for sure, but mostly we feel empowered. As we embark on this journey, we know that she, the patient, and I, the care partner, don’t have to figure it all out on our own. We’ve got a community of support at our fingertips. And that is the power of PEN.

Myeloma Patient Profile: Sharing My Cancer Journey with My Daughter

Part 1

Myeloma Patient Profile: Sharing My Cancer Journey with My Daughter Part I from Patient Empowerment Network on Vimeo.

In this part one of three, Lori Sackett shares the journey of her multiple myeloma. She explains some of the symptoms she was facing before diagnosis to having to advocate to receive next-generation sequencing testing.

Part 2

Myeloma Patient Profile: Sharing My Cancer Journey with My Daughter Part II from Patient Empowerment Network on Vimeo.

 In this segment of Lori’s story, Lori and her daughter discuss the importance of seeing a myeloma specialist, having a good support network, and the role her daughter played in Lori’s care.

Part 3

Myeloma Patient Profile: Sharing My Cancer Journey with My Daughter Part III from Patient Empowerment Network on Vimeo.

Lori and her daughter share their biggest takeaways and pieces of advice for other newly diagnosed myeloma patients and their care parters/advocates.

Myeloma patient, Lori’s advice:

  1. Insist on seeing a myeloma specialist
  2. Take care of yourself physically and emotionally
  3. Look for people/support and allow them to help you
  4. Live for now

Myeloma care partner and advocate, Carleigh’s advice:

  1. During every appointment have at least one note taker
  2. Ask for a hard copy or print out of everything
  3. Create a way to stay organized
  4. Keep a list of questions
  5. Have a mindset of persistence and perseverance, and to maintain hope

Living With an MPN and Being Your Own Best Advocate

Living With an MPN and Being Your Own Best Advocate from Patient Empowerment Network on Vimeo.

 MPN patient Rita experienced an extended path to her diagnosis. Watch as she shares her patient journey of varied symptoms, how self-advocacy and self-education assisted in her care, and her tips on how to empower yourself as a patient. In Rita’s words, “Don’t feel bad about advocating for yourself. Your doctor has many patients, but you have only one you.”

See More from Best MPN Care

Related Resources:

How Can MPN Patients Become More Proactive in Their Care?

My Polycythemia Vera Journey to Empowerment

How Can MPN Patients Stay Up to Date With New Treatments?


Transcript:

My name is Rita, and I was diagnosed with polycythemia vera in March 2019 after nearly three years of wide-ranging symptoms. Like many patients, my path to diagnosis was long and required me to self-advocate.

I was generally healthy until my symptoms of polycythemia vera began. I first experienced one episode of neck, jaw and chest discomfort, and the hospital blood test showed somewhat elevated platelets, and elevated red cell distribution width (RDW); but the doctors weren’t concerned. Next, I started getting optical migraines that were also dismissed. These were followed by incidents of feeling weak and sweaty; some days with headaches, dizziness, and fatigue; and also looking like I had a sunburn on my face with bloodshot eyes. I dismissed these symptoms. Then I started feeling short of breath at times, especially lying down, and experienced intermittent stabbing underneath my left lower chest area.

After having blood tests done, I had to call to find out my results that showed high hemoglobin, high red blood cells, and high hematocrit levels. After I Googled my test results, the first thing that came up was polycythemia vera. Experiencing additional vision issues, abnormal blood test results, chest pressure, and “foggy headedness” that frightened me, my doctor finally referred me to a hematologist who confirmed my suspicions with a PV diagnosis.

Some things I have learned during my MPN journey include:

  • We need to feel comfortable advocating for ourselves, and we need to make sure our doctors are open to being our partner in healthcare rather than our ‘boss’ in health care.
  • We also need to educate doctors that what looks like “dehydration” on a CBC could actually be a rare blood cancer. 
  • Get copies of your own blood test results, X-rays, other medical reports, etc., and, within reason, try to learn what they mean.
  • Diagnosed patients should be allowed to self-refer to an MPN specialist rather than be dependent on their physicians to do it. 
  • We need to self-advocate as “women of a certain age” to make sure we’re not medically or symptomatically reduced to “it’s menopause.”
  • Be careful how you express yourself to your doctor, because a careless comment may throw off your path to a correct diagnosis.
  • Don’t feel bad about advocating for yourself. Your doctor has many patients, but you have only one you. 

These actions are key to staying on your path to empowerment.