Tag Archive for: patient story

MPN Patient Profile: Robyn Rourick Part 2

Read the first part of Robyn’s MPN journey here…

Picking up after 26 years of watchful monitoring of her myeloproliferative neoplasm (MPN), scientist Robyn Rourick was then referred for an allogeneic stem cell transplant by her MPN specialist, Dr. Gotlib. The transplant team started working through the matching process for a bone marrow transplant donor, which often begins with close biological relatives. Although Robyn’s only sibling wasn’t a transplant match, a person considered a near perfect transplant match for Robyn was found.

At that point in her journey, the possibility of entering a Phase II clinical trial called ORCA-1 was presented by Robyn’s transplant doctor. She discovered that the ORCA-1 treatment had the potential to completely eliminate graft-versus-host disease (GVHD). The clinical trial made sense to her. In Robyn’s trained scientific mind, she agreed that the trial was founded on sound scientific rationale with the potential for clear benefit and signed up for it. She researched other things like whether the transplant team could look at biomarkers to guard against graft-versus-host disease, but she decided to take the clinical trial path as her best option.

As for her feelings about the stem cell transplant, Robyn felt there was likely going to be a positive outcome for her due to the ORCA-1 clinical trial. Her knowledge about the trial really brought her a lot of comfort and put her at ease for the time she’d be around her family post-transplant. Robyn was lucky because her doctor was actually the primary investigator on the study. When he presented the transplant study as an option, that’s when she started to do more searching to find what patient advocacy groups were out there.

Looking back on her MPN journey, Robyn wishes that physicians would provide their patients with more patient advocacy resources, such as those available through organizations like Patient Empowerment Network (PEN). She feels fortunate that she discovered PEN through another patient advocacy website, and she firmly believes in PEN’s mission of empowering patients to gain knowledge to advocate on their own behalf. “I had the realization that in the clinical trial I was in, I was only the sixth patient, and the technology was stellar in terms of what we’re trying to do in terms of cell therapy. I just felt like patients need to know about the treatment advancements, and PEN is an excellent resource for learning about treatment and support options that I wanted to share my knowledge and patient experience with.” 

Robyn was fortunate to have a team of physicians in whose knowledge and treatment recommendations she could trust. She’s  tremendously grateful, because she knows it’s not always the case, and so offers this advice for others, “Make sure that you’re comfortable with your physicians. And if not, then move on. Don’t be afraid to reach out and to make other connections to other doctors, even across the globe. You shouldn’t hesitate to request a conference call with another provider to see if they’re aligned with your diagnosis and your watchful waiting or treatment recommendations. Patients must have the utmost confidence going through their cancer journey.”

As for the scientists who handled her sample in the ORCA-1 trial, Robyn was able to meet the scientists and saw the analytical data of her sample. She was highly impressed with the protocols that they used with the samples. Robyn was just the sixth myelofibrosis patient to join the trial. To have spent her life working on medicines for patients and then to be on the receiving end of this cutting-edge treatment for transplants made her feel very privileged. 

In her life post-transplant, Robyn has continued periodic blood work for routine monitoring and has been doing well. Two years following her transplant, Robyn’s myelofibrosis is in remission, and she has no evidence of fibrosis in her bone marrow. Her test numbers have been progressing nicely, and she hasn’t needed any additional treatment since undergoing the transplant. “I don’t have a single regret. I haven’t had a pimple, an itch, a scratch, absolutely nothing. My life has resumed exactly how it was before the transplant.”

In reflecting on her patient experience, Robyn offers this additional advice to other cancer patients, “Take a deep breath and give it some time to play out. The moment that I heard the word cancer and the risks with rapid progression, I had myself dead and buried. In my mind, what I needed to plan for was death. Prepare my family. Get everything in order. And to me, that was going to be the ultimate outcome. But then as things unfolded, I had conversations, did a little bit of research, and found out I did have some options. Things weren’t so negative in terms of progression and mortality. Don’t jump to the most negative outcome possible.”

MPN Patient Profile: Robyn Rourick Part 1

Though Robyn Rourick is a scientist by training and works for a biotechnology company, she took a mind-body approach to her myeloproliferative neoplasm (MPN) journey. The time that passed between Robyn’s initial MPN diagnosis and when she finally needed treatment was incredibly – and nearly shockingly – long. She was diagnosed with essential thrombocythemia (ET) 26 years after elevated platelets were shown on a routine blood test. After she saw a hematologist, they performed a bone marrow biopsy and concluded she didn’t have myelofibrosis and received the ET diagnosis. Robyn recalls of the time of her diagnosis, “I didn’t know about myeloproliferative disorders. Not many people did at the time. Nobody mentioned that I could potentially have an MPN.” 

Robyn’s blood levels were monitored over the years, and her platelets started to decrease. Though she didn’t realize at the time, her platelets were decreasing because her bone marrow was becoming more fibrotic. She was also tested for the early gene mutations (JAK2) that were discovered as more MPN research occurred but tested negative . She later switched to another hematologist who was very tuned into the gene connections. He looked at Robyn’s medical data comprehensively and was extremely attentive to any minor changes. As her blastocytes began shifting, he urged her to go see MPN specialist Dr. Gotlib. Dr. Gotlib did further analyses and classified her as having myelofibrosis, noting that when she was diagnosed with ET that her original healthcare team also couldn’t have  ruled out pre-fibrotic myelofibrosis at that time. Fortunately, Dr. Gotlib stated if he had diagnosed her with her original blood test 26 years prior, he would have recommended to simply watch and wait while monitoring Robyn’s blood levels on a regular basis. 

Although Robyn felt healthy and had no symptoms besides an enlarged spleen, as Dr. Gotlib dug deeper into her genetic profile, he found a unique mutation that suggested she was at risk for an escalation into acute myeloid leukemia mutation. He recommended Robyn for an immediate allogeneic stem cell transplant for her MPN treatment.    

Robyn then learned that graft-versus-host disease (GVHD) was a major concern for the transplant process, which can be debilitating. So she began to seek patient advocacy resources to inform her MPN journey. “I felt desperate and wanted to meet people who had myelofibrosis who successfully came through transplant. I didn’t want to just talk to a transplant person with a different disease.” Robyn went through some patient connection programs – including Be the Match, Caring Connections Program, and Patient Power – and was able to meet a few people and became quite close with one patient. 

She learned that even though transplant will cure your disease, doctors don’t always elaborate with patients on the potential for a compromised lifestyle due to  graft-versus-host disease. Sometimes patients will come through transplant in worse condition than before the treatment. Robyn had major fears about going through transplant and being able to work and do her extracurricular activities post-transplant. “I felt like I was going to be a letdown for my family and colleagues and didn’t tell my work until I was preparing to go out on leave, which in retrospect was silly.” After telling her manager, Robyn was given complete support, and realized she could have avoided carrying so much anxiety.

“For me, self-education and advocacy are important to enable yourself to have conversations about what’s possible in terms of your treatment. You don’t have to develop an in-depth understanding, but enough to have the ability to be conversational. If you’re proposed a certain pathway, it’s good to know enough to ask why. And if you’ve done some research on your own, then you can ask why not an alternate treatment approach. I think it’s really important to have some knowledge, because it builds your confidence to be able to move forward with what’s being proposed.” 

“Give it time, allow yourself to digest the information, have conversations about it, and develop your own understanding. At first, I was very closed about my diagnosis. I told my immediate family, and I told one very close friend who had gone through autologous transplant. The more that I began to talk about it and the more that I included people in the story, the easier my journey became.” Robyn also saw a cancer therapist who made some really good points to her. “She told me that ‘we’re all going to die of something, but most of us don’t know what that really looks like.’” In Robyn’s case, she had the opportunity to learn more about her disease, guide it, and direct her journey. And that opened up a whole new perspective.

The cancer therapist walked Robyn through some exercises: “What is it you’re afraid of? What do you have control over? Allowing yourself to gain control over some things will build your confidence that you can do this.” Robyn also encourages other patients to engage their network of friends and family and realize that it’s okay to depend on people. It’s not your fault that you have this diagnosis. Getting over the apprehension of telling people about your diagnosis and embracing help from others are key pieces of advice.

Robyn views patient empowerment as essential to the patient journey. She discovered Patient Empowerment Network (PEN) through another patient advocacy website and felt it brought her MPN patient experience full circle in terms of learning what’s available. “As I’m learning more about PEN, I’m just dazzled by the different forums they have to enable knowledge transfer, support systems, and advocacy.” 

Read the second part of Robyn’s MPN journey here…

Top Ten Writing Tips and Techniques For Patient Advocates

Patient advocacy involves sharing your unique knowledge and experience with a disease or condition with the ultimate aim of raising awareness and influencing people to effect the desired change.

As patient advocates, we need a variety of tools in our advocacy toolbox in order to effectively advocate for our cause. One of the most important tools is the ability to write compellingly for a variety of audiences and formats.

Whatever audience you’re writing for, there are some basic “rules” to follow. Incorporating these into your writing will help you become a better and more persuasive writer.

1.Use Plain English

Using plain everyday words and avoiding jargon as much as possible is the first rule of good writing.  For example, instead of “commence”, write “start”; instead of “in the event that”, use “if”. To quote the great writer Mark Twain “don’t let fluff and flowers and verbosity creep in.”

Medicine is full of abbreviations, scientific jargon, and medical terminology that not all readers will understand. People read at various levels. Knowing and understanding the audience for whom you are writing is crucial when creating content. Most people overestimate their readers’ knowledge. When writing, consider your intended audience’s level of medical knowledge.

2. Write in a conversational tone

Write as if you were speaking directly to the reader. Using pronouns like “we” and “you” fosters a sense of relatability and trust. The idea is to engage the reader and personal language does just that. It’s important to create a consistent tone of voice in your content, and at the same time, choose the tone that suits your audience.

3. Write short sentences and paragraphs

To separate sections of information, use headings and paragraph breaks. follow the one-idea-per-sentence rule. Presenting information in short, manageable chunks helps you keep the reader’s attention.

4. Avoid using the passive voice

One of the tell-tale signs of scientific writing is the use of passive sentences. To make sentences more direct, use the present and active tenses instead. The term “active voice” refers to a sentence that has a subject that acts on its verb. The passive voice indicates that a subject is the object of a verb’s action.

Active Voice: ”the nurse can vaccinate your child”

Passive Voice: “your child can be vaccinated by the nurse”

Take note of how the sentence in “active voice” is shorter than the sentence in “passive voice.” Passive voice sentences usually require more words, such as “was” or “are.”

5. Cut out the deadweight

If you want your sentences to be shorter, remove unnecessary words (‘very’ is a classic offender). To help you avoid overused cliches and phrases you could try a tool like ClicheFinder.net. This simple tool finds and highlights words, expressions, and phrases in your sentences that are trite, stale, or overused to help you improve your writing.

6. Use the rule of three

In the sentence above, you’ll notice that I used the  “rule of three” (“trite, stale, overused”).  This “rule” is based on the idea that reading about things that come in threes is inherently satisfying. Consider the impact of phrases like “faith, hope, and charity” or “mind, body, spirit.” Using the rule of three in your writing helps the reader remember your points.

7. Craft compelling headlines

Consider how many headlines you read every day while searching the web or scrolling through social media. What makes you want to read an article or a blog post? It’s frequently the headline. Your headline is likely to be the first (and possibly only) impression you make on a potential reader so it pays to take time over crafting a compelling title. There is no hard and fast rule for how long your title should be, but try not to make it any longer than necessary. Aim for 6–10 words or 50–60 characters as a rough guideline.

The next time you write a headline, you might consider trying the following tips.

  • Personalize your title by adding a “You” or “Yours.” This makes your headline more effective since it speaks to your readers’ concerns and sounds more conversational.
  • Avoid the passive voice in your titles. Use strong action-oriented words and instead.
  • By nature we are curious beings, so try to leverage that curiosity in your titles.

8. Hook readers with your opening paragraph

You’ve piqued a reader’s interest with the headline; now you have the chance to pique their interest even further with the first paragraph. Make sure your opening sentence grabs the reader’s attention right away. Telling a story, sharing an eye-catching statistic, or using a memorable quote are all effective ways to accomplish this.

9. Share personal stories

As I mentioned above one of the most effective ways to capture attention is by sharing a story.  Writing is more than just disseminating information. It should also make people feel something. Your brain reacts differently to a story than it does to any other type of information, including straight facts and data. While facts and figures engage only a small portion of the brain, stories engage multiple brain regions that combine to create rich emotional responses.

Storytelling is one of the most powerful ways to breathe life into your writing. To quote a  North American Indian proverb “Tell me a fact and I’ll learn. Tell me a truth and I’ll believe. But tell me a story and it will live in my heart forever.”

10. Proofread before publishing

You should always proofread your work before publishing it. Choose a quiet, distraction-free place to do so. Turn off your phone, television, and radio so you can focus fully on the task at hand.

It helps if you print out your document. You’ll always notice more errors on a printed copy of your work. Using a blank sheet of paper to cover up the lines below the one you’re reading keeps you from skipping ahead of possible mistakes.

Another helpful suggestion is to read it aloud. When you read aloud, your ear may pick up on errors that your eyes may have missed. It’s especially useful for identifying run-on sentences and identifying those that don’t flow or make sense.

Aside from obvious spelling  mistakes, check for the following:

  • Have you used correct punctuation? Poor punctuation really undermines your professionalism. Pay particular attention to misplaced (or missing) commas and apostrophes. One of the most common mistakes is confusing “its” and “it’s.”
  • Are there any long sentences you can shorten?
  • Are you using the passive voice in your sentences? If so change to an active voice.
  • Do your paragraphs flow logically with smooth transitions between each paragraph and from one idea to the next.
  • Are there any sentences that are repetitious? Or are there any parts of the piece that need more context?
  • Have you referenced your quotes and facts correctly? If you are presenting facts in your content, be sure the sources are reliable. Check and re-check the source of quotes and statistics.
  • When publishing your writing online, such as on a blog, ensure that all links to external sites are functional and that the post is properly formatted. If you have a WordPress blog, I highly recommend installing the Yoast SEO plugin, which evaluates your post’s readability, flags passive sentences, and reminds you to use relevant keywords to improve web searchability.

Ideally, you should let your writing rest for a day to gain a new perspective on it. Better yet, have someone you trust proofread the text for you. You may be surprised at how many mistakes you missed.

Finally, one last point. End with a strong call to action. After reading your piece, what is one thing you want readers to remember or take action on? In your conclusion, motivate and empower your readers to put the information you have provided into practice.

Writing is a skill that improves with practice. I hope you find these tips helpful and encouraging as you work on improving the important skill of writing to persuade and inspire your audience.

CLL Patient Profile: Allan Rosenthal

When Allan Rosenthal shares the story of his chronic lymphocytic leukemia (CLL) journey, you can tell that he didn’t let the word cancer hold him back. Affectionately known as “Dr. Pickleball” by friends and colleagues, he led an active lifestyle when he was diagnosed and continues to live an incredibly active life with CLL. Right before he was diagnosed in 2018, Allan noticed when he was playing doubles tennis with some men younger than him, he just couldn’t keep up with them. This unusual experience of a lack of energy spurred him to see his primary care doctor. Yet his diagnosis wasn’t a typical diagnosis – far from it. He works as a podiatrist, and his internist helped him to decipher the diagnosis.

After a laboratory blood test came back, it was revealed that Allan’s white blood cell count was elevated. His primary care doctor actually misdiagnosed his symptoms as an infection and put him on a round of antibiotics. And after his usual internist returned from vacation, he thought right away that Allan had CLL and sent him to see a hematologist/oncologist. As Allan remembers, “My doctor said, ‘You’re not going to die from this. You’re going to do the watch and wait or watch and worry.’”

Like many cancer patients, Allan’s diagnosis brought concerns beyond his health. “I was worried about the financial burden. Through organizations like PEN, my oncology unit, and the social workers at my hospital I have received help.” A nurse from the pharmaceutical company also calls him every month or two to just check to see how he’s doing in terms of both physical and financial concerns.

As a physician, he’s well aware of patients’ ambiguity with their care, and it’s always good to gain knowledge. Allan has recommendations for other patients, “It’s good to have someone with you at appointments. My wife is a nurse practitioner and is also a former oncology nurse, but it’s still tough to keep up with all the improvements going on in the field of CLL.”

Allan was diagnosed in the spring and was fine until later on that summer. The lymph nodes in his neck started to swell, and he went to his oncologist who informed him about the medication ibrutinib (Imbruvica). Allan says of starting his CLL treatment, “I remember taking the medication on a Friday and then going to play golf the next day with a friend. Pretty quickly I had the energy I used to have. Now I play pickleball, golf, platform tennis in the winter, and I ski. I just bought a Peloton bike during the pandemic that’s really helped me. I have no side effects from the medication. I’m living my life.”

As for his CLL treatment, he thinks of ibrutinib in the same way that someone with diabetes or hypertension would take medication for a chronic condition. His CLL medication has allowed him to live with CLL as a manageable condition rather than dealing with common side effects that many cancer patients deal with. Allan has also learned that educating himself about CLL is vital even for someone with a medical background. He’s experienced the value of patient education. And after he learned about the Patient Empowerment Network (PEN) from his oncology team in Connecticut, Allan shares, “I also know from PEN that there are other medications if this doesn’t work out. And I’ll go from there. PEN is keeping me educated to the fact that there is ongoing research, and there are other avenues; it’s not a death sentence.”

When he was first diagnosed, despite his and his wife’s medical backgrounds, Allan felt scared and depressed. He spoke with a friend in the medical field who said, “My father and uncle have CLL. If you start fretting about it, I’m going to wring your neck. They’ve been living with it for years, and it’s not that big of a deal.” He’s since come across more and more people in his life living well with CLL thanks to their efforts to become educated and proactive in managing their diagnosis, which continues to encourage him.

Allan credits PEN with helping him in his CLL journey, “PEN has educated me further along than if I went at this alone. Dr. Google is not exactly the best source of information, and Dr. Facebook isn’t a reliable source either.” Allan looks for reliable sources, “PEN is where I can get questions answered and get the proper answers from knowledgeable people in the oncology field.”

During his CLL journey, Allan has received valuable advice from others and is now happy to be in a position to help other CLL patients. His advice for other CLL patients? “Live your life. Be active. Staying active helps tremendously. And don’t panic. Everybody has the tendency to go crazy. It’s the big C word. I was scared also. I didn’t know what this was all going to mean. But as my oncologist told me, ‘You’re not going to die from this. We can take care of it. Just don’t panic.’”

How an AML Survivor’s Resilience Saved Her Life

How an AML Survivor’s Resilience Saved Her Life from Patient Empowerment Network on Vimeo.

Acute myeloid leukemia (AML) patient Sasha’s symptoms were dismissed multiple times before her diagnosis. Watch as she shares the story of her cancer journey from diagnosis through treatment as a BIPOC patient – and her advice to other patients to receive equitable and optimal care.

See More from Best AML Care No Matter Where You Live

Related Resources:

Empowered AML Patient: Ask the AML Expert

Empowered AML Patient: Ask the AML Expert 

Does Acute Myeloid Leukemia Prognosis Vary by Age?

Does Acute Myeloid Leukemia Prognosis Vary by Age? 

Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial

Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial 


Transcript:

My name is Sasha. I live in Brawley, California. In 2017, I was diagnosed with acute myeloid leukemia (AML). When I first noticed signs and symptoms, I wasn’t sure what was wrong, but I knew I didn’t feel like myself. I was really tired, fatigued, and getting random little bruises everywhere.

I went to my local hospital three separate times, and each time they didn’t take my concerns seriously. I’d sit in a room for hours until someone finally walked by, and I’d ask to see an expert. Staff members assumed I had already been discharged without even know what my “diagnosis” was.

When I was finally seen, they ran a few tests and sent me home saying it was just anemia or a blood disorder and if I took whatever medication they prescribed, I’d be okay. I felt very ignored. As a plus size woman of color, I’ve been told all my life from medical professionals, no matter what my issue was, if I just lost weight, I’d be fine. There were even moments when the staff assumed I didn’t know English and rudely commented behind office doors. Ironically, they thought I couldn’t understand when English is actually my first language. I knew there had to be a better explanation, but I let the medical staff push my concerns aside.

Finally, after a battery of tests, I remember the doctor walking in the room. He was acting very sad and very concerned. He put his hand on my shoulder and said, “I’m really sorry to tell you, but you have leukemia.” The day of my diagnosis, I started chemotherapy and began experiencing several side effects. One of the hardest things after being diagnosed was losing my hair. Not seeing my family was equally difficult, because my parents didn’t have the gas money or transportation.

After the full week of chemo, we had to wait for results to see if the leukemia cells were gone. It was mostly a waiting game. Finally, they told me the chemotherapy worked and that the leukemia cells were gone. But in order for them to stay gone, I would need to move forward with the bone marrow transplant.

Fortunately, the results came a few months later indicating the transplant was working. I am happy to report I’m cancer-free, but the road has not been easy. If there’s one thing I learned from my situation, it’s always trust your gut. If anyone knows your body, it’s you. My advice to other AML patients:

  • Trust your gut and listen to your body. If you feel something is wrong, fight for yourself
  • Get yourself a good healthcare team who will also fight for you and your needs
  • Make friends and talk to others in the cancer community
  • Mental health is just as important as physical health. It’s okay to talk to someone professional and ask for help

Remember, you are in control of your journey and your future. These actions are key to staying on your path to empowerment.

Voice of America: Dr. Sajjad Iqbal

Voice of America: Dr. Sajjad Iqbal from Patient Empowerment Network on Vimeo.

Featured on Voice of America’s South Asia, Sajjad Iqbal, recounts how he relentlessly fought and advocated for his health and how he takes what he learned to help other cancer patients.


Transcript:

Speaker 1: 

In 2002, with the diagnosis of an extraordinary form of parotid cancer in Dr. Sajjad Iqbal, doctors announced further bad news that his survival chance for next 2 years was just 30 percent. Such patients cannot even survive for the next 5 years.

Dr. Sajjad Iqbal:    

If nobody survived for 5 years, why is it such a bad thing?  Once upon a time no one could go to the moon. Now, many have gone there. So, I’ll be the first patient who lived for 5 years.

Speaker 1:   

Instead of surrendering to cancer, he expanded his scope of study and started to explore new research on similar cancers, like breast cancer, ductal carcinoma, all cancers of head and neck and prostate cancer. His cancer had HER2+ features. A new medicine was being given to HER2+ breast cancer patients. Doctors did not agree to give that particular medicine to Dr. Sajjad Iqbal as there were no studies showing its usefulness in his type of cancer`. However, he not only convinced doctors with his logical wisdom but persuaded them to conduct new research by pointing out flaws in existing research.

Dr. Sajjad Iqbal:

After seven years, another study was published that included just my type of cancer. They said that 60 percent of patients got better from this medicine.

Speaker 1:     

In 2009, when his cancer recurred in lungs, then he wanted to have Endoscopic thoracic surgery. But doctors would not agree to do it. Finally, he found his desired doctor at Cancer Hospital New Jersey who agreed to do Dr Sajjad’s Endoscopic surgery keeping in mind that he knew more about his disease than others.

Dr. Sajjad Iqbal:  

The cancer has never come back in the lungs. If the cancer stirs even slightly, we make treatment changes immediately. You can say that we have imprisoned the cancer.

Speaker 1:  

There is a saying that hope is essential for fighting cancer. You have to be your own best advocate.

Pat:  

How are you?

Speaker 1: 

When Pat was diagnosed with cancer, she had been working in Dr. Sajjad’s clinic for 20 years. She considers it her good fortune that Dr. Sajjad was with her.

Pat:    

He said to me that I want you to learn about your cancer, read about it yourself, and then we would talk about it. And he was with me at each step. He even went with my husband and me to see the Doctor in Sloan Kettering. And then again guided us as to which doctor is better, who should I see. To check a doctor’s background, skill and qualification, for all that I depend on him.

Speaker 1:  

And when Pat’s husband was diagnosed with Prostate cancer and her daughter also had cancer, Dr Sajjad was there to guide. He directly helps many other cancer patients like Pat, in many different parts of the world, through Patient Empowerment Network. It is a free website where people, suffering from cancer, can get cancer related services and information.

Fauzia Iqbal:

Sajjad sings to her in Punjabi.

Speaker 1:

Dr. Sajjad considers family support important along with treatment.

Fauzia Iqbal:

Sajjad goes for chemotherapy alone and he is never afraid of taking bold steps like if he has to undergo some surgery. If you have such a personality, it becomes easier to deal with, and as far as family is concerned, everyone loves him & takes care of him.

Speaker 1:  

Dr. Sajjad became part of the news when a patient from New Zealand who he had helped, came to see him by travelling 9,000 miles distance. She had been given six months to survive by her doctors. Under the guidance of Dr. Sajjad, now she is cancer free. Dr. Sajjad is living an enriched life with his three children and their children. He continues to fight the battle against his own cancer. He has recorded that story in his book Swimming Upstream. This book gives hope and a different perspective to many who are struggling through difficult times. (Saba Shah Khan, Voice of America, Ridgewood, New Jersey).

Patient Profile: Vanessa Steil

“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.

Patient Profile: Lisa Hatfield Part I

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.

A New Phase: Bruce Jackson

Bruce Jackson is a multiple myeloma patient who recently found Patient Empowerment Network (PEN) as a resource for his cancer journey. This is the first of two-part series in which he shares his story from diagnosis to living his life with cancer.


“You can do nothing, or you can do something…maybe it is simply advocating for yourself or advocating on behalf of someone else.”

I guess I haven’t thought of my cancer experience as a story, and yet, that is exactly what it is: a story about a new phase in my life. I have multiple myeloma. More specifically, it is a t(4-14) translocation wherein the 4th and 14th chromosome pairs, instead of minding their own respective business, decided to share their genetic information, and that sharing process is at the basis of the disease. I don’t know if researchers yet know the cause of these translocations; some say that they result from a virus, but I know very little more than that. My 4-14 translocation is deemed a moderately aggressive cancer, but there are other much more aggressive translocations which are functionally a one-year death sentence.

I was diagnosed in May 2009. I was 53 at the time and am now 64. In my case, I was seeing my primary care physician (PCP) every six months for treatment of high cholesterol. She was treating me with a statin drug, and she insisted on doing blood work every six months. The blood work revealed an elevated total protein level, and my PCP suspected cancer, so she sent me to an oncologist who confirmed the diagnosis of smoldering myeloma.

I think there are a couple of points to be made here. One, because of the blood panels every six months, my cancer was caught early. Two, while a smoldering myeloma diagnosis may seem relatively benign, it is not. The question is, when does it morph into something else, into what does it morph, and what do you do in the meantime?

For me, this meant tracking the disease through occasional (every six months) to more frequent (every three months) blood tests to track my M protein value, which is a pretty highly correlated indicator of what is happening in the bone marrow. On a lesser frequency, I would have a bone marrow biopsy, just to see whether what was happening in my blood stream still continued to correlate with what was happening in my bone marrow. When my M protein value was around 0.8, I started to see an oncologist regarding what was initially diagnosed as monoclonal gammopathy of otherwise unspecified origin (MGUS). Then in October 2014, my oncologist was citing M protein values of 3.6, but with no other symptomatic phenomena to address, except that an MRI had shown some very small unidentifiable spots on a few of my ribs and on my sternum. The MRI report suggested that I have a re-do in six months, and that is what happened, except I was now in the hands of a myeloma specialist, and she suggested that we re-test using a CT Scan. The scan revealed growth in the spots, enough so that we were now using the term “lesions”, which was the tipping point to starting treatment.

I started my treatment program as a part of a Dana Farber Cancer Institute study, which required a prescribed regimen of Velkade (a subcutaneous injection), coupled with Revlimid (Thalidomide derivative and sister drug to Pomalyst), and Dexamethasone (a common oral steroid, which generates a synergistic effect that aids in combatting the cancer). In my first cycle, the treatment knocked my M protein value down to less than 1.0. However, in the second round, the treatment induced some unplanned side effects, all at the same time. I experienced blood clots in my lower legs, an obstruction in my digestive tract, pulmonary emboli in my lungs, a half-collapsed lung, a respiratory infection, and a massive headache. This earned me a 10-day stint in the hospital, a paranoid reaction to one of the drugs that I was given, and removal from the Dana Farber study.

Unfortunately, the respiratory infection would not go away, and only six weeks later, it was determined that I needed to have a procedure done, wherein the surgeon puts three holes through my rib cage and inside my pleural cavity with the goal of removing scar tissue from the surface of my right lung so that the medication could reach and eliminate the infection. The procedure earned me 12 more days in the hospital.

The good news is I made it through both events, and I am here to share about it!

It was determined that the Dana Farber dosage was too much for my system, so the solution was to cut the dosage back to about two thirds, and then administer more rounds. My rounds of chemo ultimately led to a stem cell transplant in September 2015. The stem cell transplant was a 21-day hospital stint (which is a typical duration), but as can happen, things didn’t automatically jump-start as expected. After my transplant, everything was jump-starting except my platelets. Fortunately, it seems there is always an alternate plan of attack, and the hematologists were able to prescribe a three-day dose of medication that on day three bumped my platelet count from two to four, and I was on my way. Plan B worked, and I’m glad we did not have to go to Plan C, because I don’t know if there was a Plan C. There were other hiccups along the way. I started having blood clots in my lower legs again, and developed pre-ventricular contractions (PVCs), which feel like a skipped beat, but are actually extra beats, and amount to an arrhythmia of the heart.

After my stem cell transplant, I was given a prognosis of four to eight years, and I was only in partial remission. Once sufficiently recuperated, I had to take Velkade as chemo maintenance. However, because of the subsequent neuropathy, and associated deep venous thrombosis (DVT) in my lower legs, the decision after about two years was to switch to Revlimid. However, the truth of the matter is, your M protein does not stop increasing with the chemo maintenance. It simply increases at a slower rate, and if the drug stops working, problems arise. In my case, the Revlimid worked for another two years, but then things started to happen in 2020.

When the medication stops working, the problems that arise are one of two things: either the rate at which the M protein increases starts to accelerate, or your immune system loses the ability to adequately recover during the seven-day rest period. Your neutrophil (white blood cells) count drops due to the chemo, but if the counts do not climb back up, that means you have to take more days to recover, lower the chemo dosage, or get a booster shot to bump your neutrophils. Any of these options would, of course, allow the cancer to progress at a faster rate. In my case, the neutrophils were dropping and my M protein was climbing, which in essence means the chemo drug was no longer effectively slowing the progression of the disease. It was time to switch to another treatment.

I was given the option to investigate my choices, but because of the myriad options available, that turned into a whole bunch of, “I don’t know”. I finally settled on Daratumumab, Pomalyst and Dexamethasone, with Dara being subcutaneously injected (like Velkade was). Pomalyst is an oral Thalidomide-based sister drug of Revlimid, and Dex is well, Dex. Given that I am only just starting a third post-transplant treatment, I think I am doing well, especially if you consider that I am mid-way through my 12th year post-diagnosis and I am more than five years post-transplant that had an original prognosis of four to eight years.

When you consider where I have been, five years is good so far. I have not had any bones break, my cancer was caught early thanks to a competent PCP, I have only a moderately aggressive translocation, which is much better than more highly aggressive versions, which could have buried me in short order. But what bothers me most, regardless of all the other things that have happened during this experience, is the uncertainty of it all. I feel like I am always waiting for the other shoe to drop.

Learn the rest of Bruce’s story in part two of the two-part series in which he shares his story from diagnosis to living his life with cancer.


Read more patient stories here.

Patient Profile: Alexis Chase, PhD

Patient Profile

Alexis Chase, PhD

“To be empowered you have to be open, to want to do it, and to accept where you are.” – Dr. Alexis Chase, An MPN Empowered Patient

Dr. Alexis Chase has had a pretty interesting life, but she doesn’t think that makes her unique. She says she thinks all women have interesting lives. Born congenitally blind in her right eye she was given the name Alexis Elizabeth Lucia Chase. “I’m very proud of my name,” she says explaining the origin. Alexis was the name of a doll her mother had as a girl, and it means protector of mankind. Elizabeth is a family name, and Lucia represents Saint Lucia, the patron saint of the blind. Her mother was a nurse and her father, who was the first to recognize she had a vision issue, had a degree in biology. She was very close with her parents who instilled in her a strong foundation in her Roman Catholic faith. While she was born in Connecticut, she spent most of her adult life in Georgia as a divorced mother who built a successful 27-year career in the prison corrections system. She worked her way up to warden and earned two PhDs, one in religious counseling and one in criminal justice and corrections. After her retirement she became an international advocate and consultant of gender and women’s rights issues that include vocational training, post-incarceration reintegration, and female prisoners with children. She has travelled as far as Afghanistan in her advocacy work, and she is also the proud nana to a cat named Nathan Edgar Chase. She’s done a lot, and much of what she’s accomplished, she’s done while living with cancer.

The first time she was diagnosed with cancer was in 1976. She was in the first trimester of a high-risk pregnancy when she was diagnosed with ovarian cancer. Her doctors thought it would be best to terminate the pregnancy, but she refused. She was determined to have the baby, her daughter, and as soon as she was born, Dr. Chase began treatment for her cancer, opting for an experimental drug that she says saved her life.

At the time, her parents, her desire to live for her daughter, and her strong faith gave her the support she needed. “They were right there with me,” she says of her parents who she is grateful to for her faith. “It’s my great equalizer. My rope of hope,” she says and adds that she can pull on her faith anytime and in any place. “You’ve got to believe in something greater than yourself because definitely we’re not it,” she says.

She’s had no recurrence of the ovarian cancer, but in 1996, during a regular wellness checkup, she was diagnosed with myeloproliferative neoplasms (MPNs), a group of blood cancers that affect the function of bone marrow and can cause a number of complications. In Dr. Chase’s case her MPNs includes iron deficiency, anemia, diseases of the blood and blood forming organs, and hypothyroidism. MPNs are chronic conditions that can transform into another blood cancer and can affect people at any age but are more common in older adults. MPNs are also progressive. Dr. Chase had no symptoms for the first four years after her diagnosis, and wondered if she’d been misdiagnosed, but in 2000 she says she just started to feel like something wasn’t right and that’s when her blood counts started to change. She began taking medication, but in 2020 it stopped working and her cancer team worked to find other medications and therapies to treat her.

MPNs are rare and she doesn’t know anyone else with the same diagnosis, but she says she has an incredible support network through her daughter, her friends that are like family, her church, and her cancer team. “They take great care of me,” she says, but she also takes great care of herself. In fact, she’s very meticulous about taking care of herself. She carefully takes her medications, and she makes herself a priority. She focuses a lot on her mental health and she stresses the importance of mental health for all cancer patients. She says she finds three ways to laugh at herself every day and she chooses six words every day that represent how she’s doing and to help her feel empowered. A recent example, “I feel surrounded by grace today”. Also, part of her self-care is taking the time to listen to calming and soothing sounds and inspirational messages and quotes.

She says it’s a blessing to have the cancer she has because she is able to handle it and it makes her take time to smell the roses. She’s handled it so well that during her career as a prison warden she never let on that she was sick. She managed to schedule her appointments around her work so no one would know. She didn’t want her illness to affect her career.

Always an empowered patient, she’s been known to walk out of a doctor’s office when a situation doesn’t feel right. “It’s important for people to feel like they are being heard and more importantly that they are being listened to.” She says “It’s also important to know what’s going on with your care. You know your body better than anybody.” Dr. Chase likes the Patient Empowerment Network (PEN) because of the resources it provides to help others feel empowered in their own care. “I found PEN and love that I can access it anytime,” she says. She feels it’s important for patients to take charge of their own care plans. “To be empowered you have to be open, to want to do it, and to accept where you are,” she says. Her recommendation to other patients is to read, and comprehend, everything they can about their illness. “If you don’t understand it, you need to have someone explain it to you,” she says and also recommends keeping a journal. “We have to have something tangible. We can’t remember everything.”

While she continues to accomplish a great deal while living with cancer, it’s not always easy. “The chronic cancer fatigue, it will get me. I fight it because I feel like once I give in it would overtake me,” she says. She does experience shortness of breath and plans her days around her energy level. “It slows me down, but I don’t let it stop me. I push myself because I know the next day or the next day I won’t be able to.” Along with continuing her consulting and advocacy work, Dr. Chase loves to travel and hopes to go to Turkey to see the Virgin Mary’s house. “You never know what God has laid out for you,” she says. “I’m still here. I’ve been symptomatic for 20 years and I’m still here.”


Read more patient stories here.

Patient Profile: Liz Sarris

Patient Profile

Liz Sarris

Liz Sarris knows the world of healthcare pretty well. Not only has she had a 40-year career as a nurse, but she’s also had a host of chronic illnesses, which means lots and lots of doctor appointments. As if that weren’t enough, Liz has also been diagnosed with cancer three times – with three different and unrelated cancers! “I’m being watched closely from many angles,” she says. “But the great news is I live to tell the story.”

Her cancer story began in 1988. Her primary care doctor found some unexplained blood in her urine and, unable to dismiss it, referred Liz to a urologist. A scope of her bladder revealed a tumor that was about the size of a pea. Fortunately, it was non-invasive, had not invaded the bladder lining, and was removed. No treatment was required, but she did have to be monitored regularly. For the first two years she was checked every three months, then every six months for the next several years. After that she graduated to annual checkups that continue to this day.

Fast forward to 2014 when she was diagnosed with chronic lymphocytic leukemia (CLL). This time, Liz was seeing an endocrinologist for a thyroid issue when the doctor noticed some abnormalities in her blood work. Further testing led to her CLL diagnosis, which, so far, hasn’t required any medications or treatments other than quarterly check ins. “It is a watchful waiting situation,” she explains.

Then in 2017 things took a turn. Liz’s gastroenterologist, who she sees regularly for two chronic gastrointestinal issues, said that there was a spot on her scans that needed to be checked out. It was a spot they had been watching, but now it was starting to change. The spot turned out to be a neuroendocrine tumor of her pancreas. It was a slow growing tumor and not aggressive, but it was malignant and had to be removed, and there was a chance that it was a lot worse than the doctor thought it was. It meant major surgery that was not at all routine, and because her tumor was in the middle of her pancreas, it was possible that she might lose part of her pancreas and her spleen. Liz wanted the best possible outcome from the surgery, which meant keeping as much of her pancreas as possible, so she started to search for a surgeon. “I wanted to see the right people who were specific to this type of cancer and who do neuroendocrine tumors every day,” she says. “If he’s going to poke around my pancreas, I want to know he’s doing 10, 12, 15 of these surgeries a month.”

First, Liz narrowed her search geographically. She lives in an area that is relatively close to several high-quality medical facilities, and she knew that she didn’t want to be too far away from her family and support system after such a big surgery. Then she started asking questions and doing research. “Because I had engaged myself with good local physicians, I reached out to them for referrals,” she says. She asked her doctors who they would send their wives to and who they themselves would go to. Then she started calling surgeons and made appointments to interview three of them. When she had it narrowed to the surgeon she felt best about, she visited him a second time. “I don’t know if it’s the nurse in me or just who I am,” says Liz about her research process. She says that the doctor she chose made her feel confident, and his approach was more hopeful because he was willing to perform the surgery using a rare technique that meant he would remove the tumor from the center and then reconnect the two sides of her pancreas. Her doctor was upfront with her about all the possible risks and made sure she knew that his plan could change if the surgery revealed a different situation than they were expecting. “Do whatever you have to do to give me the best chance at a healthy life,” she told him and added that she hired him to do the job he would do for his mother, his sister, or his daughter and that she didn’t want to see him again in five years.

Her eight-hour surgery was a success. The tumor was removed, and her pancreas was put back together in what Liz describes as a “creative way.” After her surgery she didn’t require any treatment other than regular monitoring, and so far, all her scans have been good. She credits her successful outcomes in part to having a supportive family, good insurance, and good doctors, but she didn’t have good doctors by accident. She’s very proactive in her own healthcare. “I had the recipe for a good situation, but that doesn’t mean I didn’t have to do the research,” she says.

Her background as a nurse helped her know what questions to ask, but she wants others to know they can ask the same questions and can be just as informed. “You can navigate your care more than you think you can,” she says. “You really have to utilize your resources.” Liz says resources like the Patient Empowerment Network, where patients have access to free online tools such as a checklist of questions to ask the doctor, are great for cancer patients. “There needs to be more empowering,” she says. “Much of what I’ve done my entire career is try to empower patients.” She says that being empowered means being educated, identifying your expectations, and asking questions. “We are willing to ask questions of our auto mechanics about our car’s maintenance and repair, but not of our doctors about our own bodies,” she says.

These days Liz is adjusting her expectations for her own life. In March, Covid-19 interrupted the career she’s been so passionate about when her oncologist told her it wasn’t safe for her to continue to work during the pandemic. “This is not how I anticipated retiring,” she says. With her unique perspective as experienced patient and medical professional, she has a lot of knowledge to share, so now Liz is exploring how she can continue to help other patients learn more about how to navigate the healthcare system and take charge of their own care plans. She’s empowered to empower others.


Read more patient stories here.

Chronic Myeloid Leukemia (CML) Patient Profile

You would never know that the subject of this Patient Profile is living with cancer, and that’s exactly the way he likes it. Very few people know this patient’s story, even though he’s been living with chronic myeloid or myelogenous leukemia (CML), an uncommon cancer of the bone marrow, for almost 8 years. He is the very definition of an empowered patient. He’s informed, involved, and utilizes the resources available to him. If cancer were a bull, he definitely would have taken it by the horns. He prefers to remain anonymous, but he believes so strongly in being an empowered patient, that he agreed to share his story to encourage others to take control of their own cancer care.

It was March 2013, when he went in for an MRI on an unsatisfactory hip replacement, that his cancer journey began. When the report came back it said that there was a bone marrow infiltration with a high probability of malignancy. “The word malignancy stuck out to me,” he says. He had no symptoms at the time, but he couldn’t ignore the report and knew he needed to take immediate action.

His first step was to confirm that he did indeed have cancer. Coincidentally, he was pretty well connected with a prominent oncologist who diagnosed him with CML, told him it was easily treatable, and referred him to another doctor for treatment.

Not being the kind of guy to accept his fate without thoroughly gathering information, he decided to get a second opinion, and was able to do so through another connection he had. The second doctor confirmed the diagnosis and the doctor referral.

Satisfied that he was in the best possible hands for his specific cancer, he began treatment taking one of the four tyrosine kinase inhibitor (TKI) medications commonly used to treat CML. Unfortunately, he started having intolerable side effects so, in August 2014, his doctor switched him to another TKI. While taking the new medication, he says his liver enzymes went through the roof and he was becoming concerned that he was running out of treatment options. However, once again, he was able to use his connections to get dosage instructions directly from the drug manufacturer, and with a simple shift in dosing, his problem was fixed. His liver enzymes returned to normal and he’s been living well ever since. “If I had to get a bad disease,” he says, “I got the right kind.”

His proactive nature toward his health was essential to the positive outcome he’s living with today. In addition, his connections to high-quality doctors gave him an advantage. He is grateful for that, but he’s also acutely aware that not everyone has the same advantages, and that’s why he appreciates the value of Patient Empowerment Network (PEN). He came across the free programs and resources available on the PEN website while doing his own research about CML. He believes that anyone who is sick should use whatever resources are available to get all the information they can. “The Patient Empowerment Network is a source of information and potential support,” he says. “I’ve told my friends and doctors about PEN because I want to help other people. To fail to do so would be a shame.”

He feels a sincere and urgent duty to pay forward his good fortune and credits that sensibility to his parents and his Jewish heritage. Describing himself as only moderately observant from a religious standpoint, he says he was raised to subscribe to the philosophy that there are only two kinds of Jews. “You either need charity or you give it,” he explains. In his life, he’s been fortunate financially, and so he feels compelled to give. “It’s just who I am, I thank my parents,” he says.

His charitable giving is also motivated by personal loss. His first wife died from an aggressive form of breast cancer, and he later lost a very close friend to myelodysplastic syndromes (MDS) and acute myeloid leukemia (AML), which he refers to as a death sentence. The pain of that loss continues to be palpable and has driven him to set up a foundation, named after his friend, at a leading cancer center that does cutting edge research on MDS, a group of rare and underdiagnosed bone marrow disorders.

Now at 76, with his CML in remission, he’s vibrant and busy and has no intention of slowing down. He continues to stay up to date on CML research because he believes it’s important to be informed about his disease. He serves in a one-on-one mentor program for cancer patients, and he also takes evening courses learning about topics such as the United States Constitution and the Federalist Papers. “I’m lucky,” he says. “With CML I will die with it, not from it.”

The Power of a Gift

It sounds silly to think about stuffed animals—as a then-24-year-old—or anything really giving much comfort as chemotherapy drugs flowed through my veins, but as I have come to realize over two relapses is that the gesture matters. It is as simple as that.

Whether it was my first time receiving chemotherapy or my first relapse, it gave me hope knowing that people, even strangers, cared about my well-being. By the third time around, I was barely hanging on. Chemotherapy and radiation had drained me. I had showed up to the hospital looking and feeling like death.

My “Birth” Day

I call it my absolute worst and best day: Day 0, when I received my CAR T-cells in March 2019. It was the worst, because the two prior days of pre-conditioning chemotherapy had left me in a terrible state. Getting out of bed that morning, I had zero appetite, zero energy, and zero hope. I remember feeling so mentally and physically exhausted that I could barely stay standing while checking in for admission.

Upon being admitted, however, I noticed a stuffed green grocery bag tied at the handles. A nurse had placed the bag in my room, but rather than it be a part of an official hospital welcome, it instead came from a former patient. Soon, I was preoccupied with uncovering all the thoughtful gifts left by this stranger, while reading the hopeful note about how she had been in my shoes one year prior and was well again. What an inspiration this became!

I felt myself starting to regain strength. Then when the mutant T-cells, which had been re-engineered in a lab in California to attack my cancer cells, were being infused back into me, it was literally giving me a new life. On the outside, it was entirely uneventful—think of a typical blood infusion or draw. There was also a medical student who stayed to observe and chat with me through it, and it was that distraction with the sweet care package that allowed me to see that life would keep going. I would keep going.

Paying the Kindness Forward

Such an experience is what motivated me to start my own nonprofit and pay forward the kindness that I had received. (The next hardest moment was on my birthday a few days later, when the side effects of those T-cells landed me in the ICU for two days. What a way to celebrate, huh?)

In fact, completing graduate school during a global pandemic, while founding a nonprofit that helps others affected by cancer have become my greatest accomplishments since my diagnosis. Kits to Heart distributes thoughtfully designed, curated cancer care kits at hospitals and cancer centers in the Baltimore/Washington Metro Area community, as well as ships directly to patients nationwide. I have used my experiences and interactions with patients and social workers to pack the kits with informational resources and comforting products compatible with various cancer treatments. Just like receiving a care package from a survivor gave me hope and inspiration to pay it forward, we can inspire hope at the most difficult moments of treatments.

After Treatments

After undergoing more than anyone should ever have to, life is undoubtedly different. I go on more walks and hikes, for example. I have always enjoyed walking and taking in my surroundings, especially while abroad—but being on the verge of death multiple times tends to change your perspective on simple things like being able to take a leisurely stroll.

I also find joy by giving joy, especially to others affected by cancer. The very act of giving kindness reminds me that I am alive and reinforces the immense gratitude I have. From the scientists who believed in our own immune systems and pursued the research that resulted in CAR T-cell therapy today, to my resilient caregivers, I am thankful.

Yet, not everyone is fortunate enough to have strong support systems, let alone a ride to and from their cancer treatments. It is why I strongly advocate for giving joy in any way that you can when a loved one is diagnosed. Cancer is a lonely enough journey, full of anxiety and uncertainty. It hurts when friends or relatives stay silent during such a tough period. But I get it—given the circumstances, some simply have no idea how to help, while hospitals are not able to address all physical and psychosocial needs of patients with cancer.

These are persistent problems related to cancer care, but as long as I am able to, I hope that my story and efforts are able to provide hope and inspiration to those who need it. Especially during these times, a gift and the message it brings—that you are loved—mean so much. And for me, cancer has certainly taught me how to love and be loved.


Recommended Reading

Charles Graeber’s The Breakthrough: Immunotherapy and the Race to Cure Cancer

Cancer, COVID, and Change

“There’s something to be said for not being a patient,” one of my doctors said.

“It feels so good,” I said during our telemedicine appointment, “to be away from the hospital for eight weeks in a row.” It’s the longest hospital break I’ve had since being diagnosed with cancer last summer. Before mid-March, I’d been to four to ten medical appointments every month. Being a cancer patient felt like a full or half time job. Because of the pandemic, I’m now treated by my oncology team from the comfort of my own home.

I don’t miss shuffling from room to room or floor to floor and sitting in waiting rooms for hours. I love not needing to ask for rides or take cabs or public transportation while my white counts are low. I don’t miss being poked,  prodded, weighed, and measured or having my vital signs documented in hallways while removing my coat, wig, and shoes. I love not having to roll up sleeves for the vials of blood to be drawn or to pull down my pants so the doctor can put a stethoscope to my belly and bowels.

Because of the increased health risks at hospitals, new access to telemedicine, and flexibility around clinical trial protocols, I can see my oncologist, face to face, through Zoom. Questions can be answered ,via email, a text, or a phone call. Clinical trial drugs are overnighted to me.

I enjoy the time and money I’m saving and the convenience of getting all care from home. But I also miss the real-life hugs, handshakes, and high fives that used to come with seeing the clinical team in person.

COVID Challenges

Many cancer patients are losing jobs, homes, loved ones, and health insurance. For those newly diagnosed with cancer, surgery, scans, and treatments must be done all alone. Those in active treatment are often terrified of catching COVID-19 while immunocompromised. Others are afraid hospital visits will expose our family members to COVID.

It’s startling how much hospital protocols and procedures have changed. When I look back or think about what comes next, I worry. I hope the pictures and stories below capture what it’s like to be an oncology patient and how swift and severe the COVID-related changes over the last few months have been and continue to be.

From Person to Patient

My partner drove me to the hospital on the morning of my surgery. We checked in before 6a.m. and waited, with others, in the lobby.

Eventually, we were called up and walked, single file, through halls by someone escorting us to the pre-op area. Each one of us was assigned a bed (pictured) and a nurse (not pictured). The photo is of the pre-op area.

My partner got to visit me before surgery. He was there when the surgeon, nurses, fellows, and anesthesiology came to prepare me for surgery.

If surgery were scheduled today, my partner wouldn’t be able to stay with me.

The Shock of a Post-Op Diagnosis

This is me in post-op. My partner took this photo on his phone and was able to share it with my family and friends to let them know I made it through surgery. They were worried because it went hours longer than expected.

In the photo, I’m high as a kite and happy to be alive. I’ve just downed the iced coffee my partner snuck in (as planned and with permission from the nurse). In the photo, I am still in shock that my surgery was five hours long, it’s afternoon, and that cancer was found. I don’t yet know how serious my diagnosis will be. That will come twelve hours after surgery when the surgeon explains my cyst was actually a cantaloupe-sized cancerous tumor, aggressive, advanced, and usually chronic. Mercifully, my partner is with me as she explains that she had to do a total hysterectomy, removing ovaries, fallopian tubes, lymph nodes, and my omentum and lays out the timeline for chemotherapy.

My partner held my hand and crawled into my bed to hold me while I sobbed. But he provided far more than essential emotional support. He helped me stand and keep my balance, helped me get to my first trip to and from the restroom. He was there to advocate for me when I dozed off and to get the nurse when my call button went unanswered. He was the one who provided my loved ones with updates. He was the one who snuck my favorite health foods to help “wake up” my digestion enough to allow me to be discharged after one day.

It’s hard to imagine what that traumatic and challenging day would have been without him. I can’t imagine recovering from major surgery and receiving such devastating news alone but it’s what many diagnosed with cancer during COVID now endure.

At-Home Adjusting & Recovery:

Going home after surgery is comforting and scary. My right leg was giving out from under me because my obturator nerve “got heat” during my surgery. I had trouble standing in the shower or lifting my right leg onto the bed or into a car. I had extensive swelling and bruising on my right side and pelvic area and had a bit of a reaction to the bandage tape. I didn’t know what was normal. And after a phone call to the hospital, I was asked to come back in for a check-up.

Today, I’d either have had a telemedicine appointment or need to decide if an in-person visit with a medical professional is worth possible exposure to COVID. These are the types of decisions we are all facing but it’s especially scary when one is already vulnerable and fighting for life.

Early Treatment: Chemo Buddies are Not Optional

Getting chemotherapy infusions is time-consuming, scary, and intense. Everyone reacts differently to the many drugs given with chemotherapy (such as Benadryl, steroids, Pepcid, and anti nausea drugs). Everyone reacts differently to the chemotherapy, marked hazardous,  that require the nurse to wear gloves, masks, and protective clothing to prevent contact in case of accidental spills. Some drugs make you sleepy, and parts of your body numb. Others make you feel amped, wired, and agitated.

Some cause nauseous, headaches, or allergic reactions, immediately and others not for days or weeks.

Having a chemo-buddy like Beth was a huge help. She was the one who asked for window seats in the infusion center, who made sure I got warm blankets. She massaged my feet and reminded me to listen to guided imagery. She sat with me in waiting rooms as we waited for my labs to come back to make sure my white and red blood counts weren’t too low, my liver counts not too high, and that the chemo was making my tumor marker scores go down.

She was the one who touched the elevator buttons for me, the one who walked me to the car and handed me off to my fiancé at the end of the day. She was the one who got me water, coffee, or snacks.

I felt safer whenever I had a chemo buddy with me and Beth would also take notes and make sure I didn’t skip any of my questions just because the oncologist seemed in a hurry.

Beth was not only a source of support but provided an extra pair of hands to plug in my iPhone, to hold my bags, food, or books. She was the person I could share tears, laughs, and heart to hearts with. She listened as I worried about my daughter, as I struggled to balance work and parenting.

She was there to support me as I talked endlessly about healthy eating, fasting, supplements, and complementary medicine. But the greatest comfort of all was knowing she would be there if passed out, fell, or had an allergic reaction to all the treatment drugs. At my last treatment, I was alone and Beth at home. It was hard.

In-Between Hospital Visits: Public Services & Personal Support

 

Social distancing during treatment is hard even for introverts like me who need a lot of alone time. When physically weak, short visits with loved ones who bring food, hugs, and gifts are life-affirming and life-changing.

Those who show up do so for cancer patients as well as our families. They help us to take care of our kids, partners, pets, plants, and housework. They help us manage as we face fear and loss, whether losing jobs or body parts, or hair and having few or no visits is hard. Today, barber shops where we might get our heads shaved are closed.

The wig shops and stores we go to for hats and head coverings are often closed.

We can’t go out to eat with loved ones, or do yoga on good days. We can’t have parties for our loved ones to create normalcy or new rituals. We can no longer go out in the public either. We can’t do things such as sitting alone writing in a journal and drinking a smoothie when swallowing food is too hard.

We can’t travel to remind ourselves there is still beauty and magic in the world and to enjoy our loved ones and lives as much as possible.

These are not all small things or luxuries in coping with the brutal effects of cancer treatment and chemotherapy. They can change the cancer and recovery experience and all that helps keep us strong. 

Later Treatment

We need others when we are sick. We might need help standing, walking, or eating. We might need rides, treatments, or blood or platelet transfusions. We might need help articulating symptoms and side effects. To have fewer in-person visits when so medically vulnerable can be anxiety-producing.

We also have less in-person celebrations with our clinical teams when we finish a line of chemotherapy or have a cancer-free scan. We no longer have informal pet therapy either with the cheerful and cuddly animals of friends, family, and neighbors.

I can’t imagine going to chemo alone, depleted, and with low white counts.

The increased risks, vulnerabilities, and lack of human company and tactile comforts feels indescribably epic.

Maintenance Treatment & Clinical Trials

My immunotherapy infusions (or placebo) have been put on hold for the past two cycles. I asked if I could remain in my clinical trial if I refused to come to the hospital for treatment until the risk of getting COVID is decreased. Luckily, I’ve been allowed to stay home. Clinical trial protocols, in general, are much more flexible as a result of the pandemic. My medication (or placebo pills) are mailed to me. Before March, in-person prescription filling was required and always took hours.

However, I’ve been weighing what I’ll do if I have to weigh virus-related risks against the possible benefits of clinical trial treatment. If I’m required to be treated at the hospital I may drop out of the trial. This is one of the many difficult decisions oncology patients often face but it’s made more complicated because of the coronavirus. .

Have Some Changes Been for the Good?

The losses, challenges, and changes are worrisome and real. That said, not all the COVID-related changes for oncology patients are bad. The whole world is wearing masks, staying home, socially distancing, and worrying about health, wellness, death, and dying.

Instead of being stared at when I wear a mask, I’m now in good company, because much of the world is doing the same. Many of us are consumed with health issues and worried about health, mortality, and immune functioning.

To be reminded, once again, that health and life aren’t guaranteed to anyone, that we are all facing mortality, and must appreciate every day we have, is strangely comforting. While I’m reminded of our collective vulnerability, to hear health concerns, risks, and challenges confronted as the world and nation’s collective concern is a reminder that none of us are being personally picked on for failing at being human, we are just, in the end, all excruciatingly fragile and mortal.

“I feel like I’ve been slow-dancing with death since last summer but now I feel less alone,” I told my friend Kathy. “It’s like others have joined you on the dance floor,” Kathy said. “Yes,” I said, which once again makes me feel like a person rather than a patient and there’s something to be said about not being a patient….


Resource Links:

  1. The National Cancer Institute  guide: Coronavirus: What People with Cancer Should Know.
  2. American College of Surgeons: (ACS) Guidelines for Triage and Management of Elective Cancer Surgery Cases During the Acute and Recovery Phases of Coronavirus Disease 2019 (COVID-19) Pandemic
  3. Sample of patient visitation changes hospitals have implemented from Mass General Hospital.
  4. Telehealth at Dana Farber.
  5. Coronavirus (COVID-19) Update: FDA Issues Guidance for Conducting Clinical Trials

Patient Profile: Perseverance and Positive Thinking Helped This Young Mother

Cancer is a stealthy assailant. Symptoms can be nonexistent or masquerade as some other ailment. When a medical professional utters the “C” word, the shock can be intense.

“I had no idea,” said Lindsay Hutchings of the softball-sized tumor that had been growing in her chest behind her breastbone. “I just knew I didn’t feel right.”

Lindsay was 34 at the time of her diagnosis. A mother of two young children, she never suspected cancer when she started feeling unwell. It was October. Time for picking Halloween costumes and the season when colds spread like wildfire through schools.  A mom with young kids feeling fatigued and achy was nothing to be alarmed about.

Lindsay went to a walk-in clinic. When she didn’t improve, she went to her primary care doctor. She was given antibiotics. She was tested for the flu and then mono. Allergies were blamed and antihistamines suggested. Every week she was back in either the walk-in clinic or her primary care doctor’s office.  Until one morning she woke up with a swollen neck and jaw.  She knew this was not just a stubborn cold. She knew it wasn’t allergies.

“This time I was diagnosed with a sinus infection and referred to an Ear, Nose & Throat (ENT) physician. It was frustrating because I knew it wasn’t a sinus infection. I just didn’t have any idea what it could be.”

By this point, Lindsay’s husband, Jake, was going to appointments with her in hopes he might think of some question or detail she had missed. The ENT doctor examined Lindsay and listened to the path that had brought her and her husband to see him. He scoped Lindsay’s sinuses and found nothing.

Then he ordered a CAT scan and posed the possibility that Lindsay’s symptoms might not be related to a virus, allergy, or superbug. It might be cancer.

She was told to expect to wait three weeks for the results of her CAT scan because of the Christmas and New Year’s holidays, but the ENT called her after a few days with the results.  He suspected lymphoma and referred her to an oncologist.

Lindsay started the New Year off by having two biopsies and a PET scan to confirm what the ENT had suspected.  Four months after she first began feeling off, Lindsay had an answer. It was Stage IIB Hodgkin Lymphoma.

About Hodgkin Lymphoma

Cancers that start in white blood cells—also called lymphocytes–are categorized as lymphomas. The two main types of lymphomas are Non-Hodgkin Lymphoma and Hodgkin Lymphoma. Hodgkin Lymphoma (HL) can start in any lymphoid tissue in the body, such as the spleen, bone marrow, thymus, adenoids or tonsils. However, it most often starts in lymph nodes in the upper part of the body. Lymph nodes are bean-sized collections of lymphocytes and other immune system cells and are located throughout the body.

The causes and triggers for HL are unknown. Children and adults can develop Hodgkin Lymphoma. The average age at the time of diagnosis is 39. Although there is a higher rate of lymphomas in people with immune disorders, there is usually no known risk factor or cause for people diagnosed with HL.

There are four subtypes of classic HL and a rarer form of HL called nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL). Treatment for the disease varies depending on what type the patient has, what stage the disease is in (I, II, III, or IV), and whether certain other symptoms are present (called B symptoms).

Cancer’s Emotional Side Effects: Shock, Optimism & Guilt

From the first mention of lymphoma by the ENT physician Lindsay began researching the disease online. She went to her first post-diagnosis oncology appointment armed with questions. Her oncologist patiently answered her questions and laid out a treatment plan he felt confident was the right one. He explained the survival rates were high and the rates of recurrence of HL were low. He assured Lindsay and Jake her prognosis was good.

“I was in shock. I had no idea what I was doing but he was responsive and reassuring. I would call or email my oncologist between appointments with questions and he always responded. It really helped me be positive and more confident,” Lindsay explained.

She needed that positive confidence to help with the first challenge that followed on the heels or her diagnosis. She and Jake had to sit down with their daughters—who were just four and seven—to explain their mommy had cancer and what that meant for their family.

Lindsay’s mother had passed away from lung cancer just two years prior.  It was hard for seven-year-old Delaney to understand that this cancer was different from her grandmother’s.  She became anxious after the effects of treatment began taking their toll that Lindsay might die just as her grandmother had.

Her younger daughter had a hard time distinguishing the kind of sick her mommy was from the everyday illnesses she and her friends might have.

And of course, once treatment began, there was a lot Lindsay couldn’t do for her children anymore. Some days she couldn’t get out of bed. Often Lindsay was unable to take them to school or help with homework. She stopped volunteering at their schools. A low point for their family came early in Lindsey’s treatment when Delaney came home from school sick Lindsay had to avoid being near her. Meanwhile, her husband worked from home as much as he could or took time off to care for Lindsay and their daughters.

Lindsay admits, “I still feel guilt for the burden I put on my family.”

The Cancer Journey Continues

Lindsay’s cancer was treated with chemotherapy and radiation. There were side effects, of course:  exhaustion, chemobrain, nausea, constipation, blood clots.  She had to get daily shots of blood thinners in the doctor’s office, which brought other risks and complications. There were moments of panic when it seemed the tumor had stopped responding and additional biopsies followed.  But in the end, nearly a year after Lindsay first began experiencing symptoms, she was declared cancer-free.

There is a sense of victory from beating cancer. But like many other cancer survivors, Lindsay can’t say her cancer journey has truly concluded.

“At this point I am cancer-free, but I’m paranoid. It [the tumor] got so big without me knowing! I feel like some part of me will always worry.”

Ten to 30 percent of HL patients experience recurrence of the disease, with recurrence being lowest for those who are treated in the early stages of the disease. However, rates of developing a second cancer are higher for HL survivors than the general public regardless of whether the lymphoma returns.

Lindsay will have quarterly follow-up visits and two scans this year to screen for recurrence. As long as her results remain normal, she can scale back to annual screenings the following year. However, because she’s now at higher risks for other medical issues, she needs annual screenings by a cardiologist and pulmonologist. She will have annual mammograms now, instead of waiting until age 40 or 45. She has a roster of doctors at a time of life when many of her peers are in peak health.

The upside, Lindsay says, is that if any of her friends or family ever need a recommendation for a specialist in town, she has her list ready!

In addition to the health concerns she will carry, Lindsay also continues to deal with fatigue. Fortunately, while undergoing treatment Lindsay was able to connect with, Brittany, a two-time survivor of Hodgkin Lymphoma.  Brittany used to teach at Delaney’s school and when she heard about Lindsay’s diagnosis, she tracked down her phone number from a friend because she knew from experience how helpful it is to hear perspective and encouragement from someone who has been there before.

“When I went to my appointments, I was usually the youngest person in the office by decades,” Lindsay explained. Talking to someone closer to her own age has helped.

In addition to finding a connection with a fellow survivor, Lindsay is also grateful for the support she and her family received from friends and family in their community. During her treatment, Jake and Lindsay’s family helped as they could.  But there was also an outpouring of support from friends and acquaintances who helped with meals, gift cards, and donating to a GoFundMe account for the family.

“If I could give one piece of advice,” Lindsay says, “it would be to build your community. If we didn’t have friends and family to help get us through, I don’t know what we would’ve done. You can’t be involved in your community or volunteer or even go to church when you are sick. But I am so grateful that we were involved and active before the diagnosis.”

At a time when she saw few people and did very little outside of her home, she felt buoyed by the care and concern of from relationships she’d established before her illness. So, along with the guilt and worry she may carry forward from her cancer journey, she will also carry an abiding appreciation for the value of a supportive community.

Life for the Hutchings family is gradually settling back into normalcy, with family vacations and school schedules supplanting doctors’ appointments and treatments. Lindsay can begin to enjoy her new mantle of ‘cancer survivor’ with increasing confidence. But rather than consign the experience to something that “happened” to her, she is sharing what’s she learned from the experience. She would not claim to be an expert in cancer and its treatment options. But she does advocate for the power of building relationships and positive thinking. These are lessons that can help others whether they are confronting cancer or any other life-altering ordeal.

Tag Archive for: patient story

Best Practices for Sharing Your Patient Story #patientchat

You’re Invited! We hope you’ll join us for our next Empowered #patientchat discussion with The Patient Story on the best practices for sharing your patient story.

The Patient Story is a community of cancer patient and caregiver voices with one goal: humanize every diagnosis. They interview recent survivors and put their stories up in FAQ-format with treatment timelines to help newly-diagnosed patients and caregivers better understand what they may be dealing with during and after treatment. Join us at ThePatientStory.com.

Guiding our discussion will be the following Topic (T#:) Questions:

T1: Why do you think it is important to share your patient story? #patientchat

T2a: How did you handle sharing your diagnosis with your family and friends? #patientchat

T2b: If you have children, how did you approach telling them? #patientchat

T3: How did you decide when the right time was to share your story? #patientchat

T4: What are your tips for deciding how much to share about your diagnosis? #patientchat

T5: Where can you go to share your story? #patientchat

T6: For those of you who have been telling your story for a while, what do you wish you would have known before you did so? #patientchat

We hope to see you Friday, August 7th on Twitter (or tchat.io/rooms/patientchat) at 10:00 am Pacific / 1:00 pm Eastern. Be sure to include the hashtag #patientchat in all your responses!


Empowered Patient Chats (#patientchat) are held every other Friday at 10:00 am Pacific / 1:00 pm Eastern and during the chat patients and advocates come to learn from each other and discuss topics of interest to empowered patients.

Click HERE to learn more about the Empowered #patientchat Series plus read tips on how to participate.

I'll be at the Empowered #patientchat with @Patient_Story on Fri 8/7 1pm ET. Join me! Click To Tweet