“Well, You Don’t Look Sick”

A Phrase Commonly Heard by MPN Patients

 

"You look fine to me!"

“You look fine to me!”

(Editor’s Note: This post was written by PV patient, PEN Advisory Board member, and PV Reporter founder, David Wallace. The post was originally published in the PV Reporter.)

Isn’t it amazing how well we look?  In a group gathering of MPN patients you will see very few wheelchairs, walkers, canes, portable oxygen tanks or other medical devices required for daily living.  Behind the facade of  “well-appearing” individuals, we silently suffer from a long list of symptoms including:

  • Fatigue, the #1 complaint and it can be debilitating at times
  • Pain (which can manifest itself in bones, joints, abdomen, back, arms, legs….and the list goes on)
  • Itching (more formally called pruritus in the medical world)
  • Headaches
  • Gout
  • Neuropathy
  • Dyspnea (a fancy medical term for shortness of breath)
  • Constitutional symptoms
  • Night sweats
  • And the list goes on – more symptoms here

I doubt there are many among us who have not heard family or friends utter the familiar phrase“you don’t look sick.”  Not really something we want to hear as it diminishes the “quality of life” struggles we go through living with MPNs.

Living in the “World of the Well” and the “World of the Sick”

MPN puzzle

Human Jigsaw Puzzle

Although we walk proudly in the “world of the well”, many of us live in the“world of the sick” or perhaps bouncing between the two worlds depending on our blood counts, spleen size, level of fibrosis or other intangibles.  Almost like a “dual citizenship”, we stand among the chronically ill.  Recent estimates put Chronic Illness at about 50% in the United States.  Many myeloproliferative neoplasm patients suffer from multiple symptoms turning us into “human jigsaw puzzles” waiting to be put together by doctors who frequently disagree on a standard course of treatment.

The Spoon Theory

Why all the ramblings about symptoms and issues we all know?  The above is a preamble to a post I read recently called the Spoon Theory by Christine Miserandino.  She suffers from Lupus and provides an outstanding narrative on living with a chronic illness – using spoons as an analogy for how much energy she can expend in a given day.

While Lupus in not an MPN, the article stands as a common thread for all of us who live with “invisible chronic illness.”

The upside: live every day to the fullest!

Andrea Marquez

Board Member

Andrea Marquez is a Mexican-American with 8+ years of professional experience in production, digital marketing, administration and communications strategies. She currently works at Amazon as a Podcast Host and Producer for Amazon’s first official podcast with the goal of helping small business owners.

Her past roles at the Hispanic Communications Network and Cien+ involved managing clients/projects, timelines, metrics and reporting. With a background in journalism and communications strategy, Andrea curated and executed high-impact campaigns that were distributed through La Red Hispana and developed LatinEQUIS, an English-language brand seeking to motivate Millennial and Gen Z audiences to get involved with the Latinx community.

Andrea’s previous experience includes working for singer and producer Marc Anthony’s company, developing a rebranding strategy, improving communications, and engaging Marc’s fanbase. She also worked at A&E Networks, the parent company of AE Network, the History Channel, and Lifetime — as a digital editor and marketing manager. During her time at A&E, Andrea led production teams for in-house productions, was in charge of History Channel’s YouTube content and served as a key part of the team that initiated a corporate diversity program within the company. While finishing her Master’s degree Andrea was a freelance writer and event organizer in Texas and Mexico City, working with the Secretariat of Agriculture of Mexico, the Penguin Random House Publishing Company, and various production companies.

Andrea holds a B.A. in Political Science and Theatre Directing from Columbia University in New York City and a Master’s in Journalism and Legal Studies from Harvard University. During her free time, she enjoys reading (she reviews books for Penguin Random House), building Legos, or doing anything that involves being creative.


Listen to Andrea share her and her family’s inspiring story of patient empowerment on Rosa es Rojo’s SuperVive podcast, here.

Deirdre McGinley-Gieser

Board Member

Deirdre McGinley-Gieser is the Chief Strategy and impact Officer for Meals on Wheels America and is responsible for the organization’s strategic and operational planning and for the programmatic work that underpins their core mission areas. Prior to joining the Association, Deirdre served in multiple roles with the American Institute for Cancer Research and worked to advance the cancer prevention mission and vision for over 25 years. As Executive Vice President,Deirdre directed the research, education and communications departments of the Institute and led on advocacy and policy. She has also worked at AICR’s international affiliate, World Cancer Research Fund International, in London, U.K. as the Director for WCRF’s international operations. She contributed to starting and building other WCRF affiliates working in diverse areas such as legal, regulatory, fundraising and program development as well as strategic planning. Deirdre has had the privilege of working on all three of the WCRF/AICR Expert Reports published in 1997, 2007 and 2018 respectively.

Six Lessons Learned From Breast Cancer

“The period of greatest gain in knowledge and experience is the most difficult period in one’s life.”  — Dalai Lama

Writing in Oncology Times, radiation oncologist, Matthew Katz MD, described cancer as an illness of transformation. “Biologically” he wrote, “it represents a change in growth and homeostasis. Metaphorically, a cancer diagnosis can transform how you see yourself and the way you experience life afterward.” When the dust settles after the cancer storm has passed, it is not uncommon for patients to reappraise their lives. Cancer forces us to slow down and look at what really matters. Caught up in the routines of daily living, it is easy to avoid doing this; but cancer stops us in our tracks and pushes us to the edge of what is familiar. With cancer there is no hiding place; its sharp glare strips away pretence and artifice, revealing the true nature of our lives and relationships.

Cancer is an invitation to take stock and re-examine your life, to discover ways of leading a more meaningful and fulfilling life. Richard G. Tedeschi, PhD, professor of psychology at the University of North Carolina Charlotte, reports five common growth outcomes from interviews he conducted with trauma survivors.

  • A deepened appreciation of life.
  • Enhanced relationships with others.
  • An appreciation for personal strength and endurance.
  • Setting out on new pathways or pursuing new interests and opportunities.
  • Spiritual growth and development.

As part of breast cancer awareness month, I extended an invitation to six women to share what they have learned from their personal experience of breast cancer. Their answers to the question, “what did cancer teach you?” reflect the themes identified by Dr Tedeschi. The women’s experiences span a trajectory of breast cancer from recent diagnosis and active treatment, to several years’ post-treatment.

Elizabeth McKenzie, a licensed psychologist who lives in Seattle, WA, was diagnosed with breast cancer in 2012. She learned to appreciate the value of stillness and find healing in solitary pursuits.

“When I was diagnosed with cancer in 2012, I knew that I had just been enrolled in a crash course with countless learning objectives. Some of the lessons, however, have been unexpected.

I learned to appreciate stillness, the silence in life. I am an extroverted person. I work as a child/adolescent psychologist. I am married. I am a mother. I am a daughter and a sister. I have many friends. Before cancer, I thought that the foundation of my life was largely my connection with others. The time I was forced to be alone to heal from many surgeries for my own health, led to my pursuing other solitary pursuits, mindfulness meditation, nature photography, personal writing, and exercise.

Over time, I have learned that my individual experience was also part of that foundation; to have time alone to live in mindful stillness is a basic need for my mental and physical health, one that I had long neglected. In working on this solitary foundation, I have also strengthened my connection with others. I am now giving serious consideration to attending a residential mindfulness retreat, one that would require that I be silent, except for counseling with teachers, for 3-7 days. That is something that in the past, I would have considered myself neither able to do nor willing to give myself that kind of time. Today, I feel emotionally and physically ready for the experience of being by myself, with myself, surrounded by nature, for days on end. This gives me sense of peaceful willingness, a gentle hopefulness, in a life full of uncertainty.”

Becky Hogue, a PhD Candidate (Education) at the University of Ottawa, was diagnosed with breast cancer in 2014. Becky wanted to share a cautionary tale so others could learn from her hard-earned experience.

“When I think back about one thing that I’ve learned, it is that treatments change over time but advice is full of ‘old wives tales’ which are often based upon older treatments. This was never more poignant than during my last round of AC chemotherapy. Throughout AC chemo, I had been suffering from nausea. I knew from support group that people who tolerated it well only had nausea for three to five days. I had nausea for at least eight days. Given I was on a 13-day cycle, this meant more days with nausea then without. Now, my nausea was never really bad. When I complained to my oncologist, he asked me “when was the last time you threw up?” Never. My nausea was never that bad, it just lingered.

The folks at support group (especially those a year or so ahead of me) would talk about different nausea meds. The meds I was on were not the meds that everyone was talking about. I found myself wondering if I should be on different meds? In my mind, a change of meds would mean less nausea. I would tolerate the chemotherapy side effects so much better.

What I didn’t realize was that these different nausea meds were the old school meds. The meds my oncologist had me on were the new ones. People in support groups, and some of the older chemo nurses, were not familiar with the new meds. The recommendations I was getting about ‘what works’ were ‘old wives tales’, and I bought into them instead of trusting my oncologist.

For my last bout of AC chemo, I tried a different combination of anti-nausea meds. My oncologist was away, so his nurse practitioner changed my meds (in part because I asked for it). I’m sure that if my oncologist was there, he would have explained that I was on the new meds, but also that they were doing their job. I didn’t know the other option was the older option. I didn’t realize that the folk lore about the effectiveness was in part just because it was the older meds. The new meds had not been around long enough to be part of the lore. With the change my nausea was no better, but the side effects of the meds were much worse. I ended up with terrible mouth sores (so bad I needed liquid morphine to manage the pain). One of my biggest regrets regarding my treatment was that I changed anti-nausea meds for the last cycle of AC chemo.  I had forgotten my own advice. I had forgotten who I had decided to trust (my oncologist), and let the ‘lore’ effect my treatment.

This tale is meant to be a cautionary one. Not so much about seeking advice, but about remembering that people who have followed this path before you did so at a different time. The treatment options (and side effect management options) available to you today may not be the same ones that were available for someone else a year ago. Although older treatments may work, chances are the newer ones are better. Before changing treatment plans based upon what you are hearing on the net or in support groups, ask yourself ‘is this an old tale’? And finally, decide who you are going to trust, and trust them.”

Audrey Birt, a two-time breast cancer survivor, focussed on lessons of courage, connection and resilience.

“Cancer taught me I’m more resilient than I would have believed, it helped make me braver. It also taught me that life cannot be controlled. This made me more able to live in the moment and for the moment and that’s probably not so good for my bank balance but it’s great for my life balance in a way. It taught me to reengage with writing through my blog and in a funny way it changed my life and connection to others. But it also taught me my fragility and that’s a lesson I’m still learning, one day at a time!”

Author of From Zero to Mastectomy, Jackie Fox, has written of how breast cancer “gave me part of myself back”.

“One of the obvious benefits of cancer is reconnecting with friends and family, but old loves like art and music may reappear in your life as well. In my case, I started writing poetry again. I hadn’t written or published anything for nearly 20 years and I really thought that part of my life was over. I’m so grateful to have it back and I hope I never lose it again.”

Liz O’Riordan was diagnosed with breast cancer in July 2015. From her unique perspective as a consultant breast surgeon, she is learning what it’s like to be a patient from the other side.

“Being a patient in my own speciality has opened my eyes to a lot of little things that could be changed to improve patient care. I learned that the language of cancer is completely different for a patient compared to a doctor. I have been made acutely aware that some of the phrases I’ve used in clinic when breaking bad news, that I’ve heard others say, or come up with myself, now make me cringe. A lot of women get recalled from screening with tiny low grade cancers (<1cm), and I’ve said “If you’re going to get breast cancer, this is a good one to have”, or “You’re lucky that we caught it early”. All of these phrases were said with good intentions, to try and reassure the women that they were unlikely to die of their cancer, and would not need chemo. And most women are still in shock, so I never see them truly react to what I have just said. But no cancer is a good one to have, and no-one is lucky to get cancer. I will pay close attention to what I say to patients in the future.”

The final lesson is one of authenticity and integrity, something Eileen Rosenbloom who was diagnosed with breast cancer in June 2010, believes cancer cannot take away.

“Although I often felt like cancer was a thief that had taken everything from me, being so ill also created an opportunity to see what it could never take — the very essence that is me. Sometimes I’d look at my eyes in the mirror and think: There I am, right there. I’m still me. It felt empowering to realize no matter how dark things got, I still had control over some part of myself. My very essence remained intact, even if stripped down to a raw version without any frills.”

Whatever place you are at with a diagnosis of breast cancer, there are lessons to be learned. These will be unique to you; but you can also learn from those who have walked this path before you. Reach out to them, and lean on their experience to help make the way a little smoother for your own journey.