Educator As Patient

[educatoraspatient]

Shared elsewhere on 9/13

Eight years ago today, I added cancer survivor to my bio... Today was the day I had the surgery that helped save my life. It was followed by six long months of chemo. We have to remember (and sometimes even embrace) that the personal can become professional (and vice versa) and as prolific as cancer and other chronic diseases are, we also have to remember that our professional lives are comprised of complex humans, who may be dealing with more than just their "9-5 to do list"... So here I am... eight years after my professional life became personal and then professional again... taking all that I have learned and taught/13 about cultural competency and health equity over the last 20 years and adding in my personal patient experience... presenting and educating wherever I can on the opportunities to make cancer care more culturally and linguistically appropriate and seeking all the places we can advance health equity. We have much to learn from each other and can use our personal and professional lessons learned to improve the lives of so many. take care of yourselves and take care of each other.

[educatoraspatient]

MGH researchers discover how triple-negative breast cancer can evade powerful drugs

Massachusetts General Hospital researchers have identified for the first time how a highly aggressive form of breast cancer can evade one of the most powerful and effective drugs used to treat it, reporting their findings in Cancer Discovery, a journal of the American Association for Cancer Research.

[educatoraspatient]

Earliest Images of Breast Cancer Found in Renaissance Paintings

The signs of illness in the paintings illustrate that breast cancer is not just a modern malady

[educatoraspatient]

12 Things Only a Survivor Can Tell You About Cancer |...

Doctors may have the medical know-how to treat you, but what about all the repercussions of cancer in your life outside the hospital? This survivor took note of some quirks only someone who has been through cancer can tell you about. The last thing an otherwise healthy 23-year-old girl would expect is a cancer diagnosis. Early into my own diagnosis, when my world was turned upside down, I wrote this list to myself to show that there's more to having cancer than the sterilized, medical side of things.

[educatoraspatient]

Outcome Data for Black Women With Early TNBC Suggest Research Needed to Combat Disparities

Black women with triple-negative breast cancer may have worse survival outcomes compared with White women, even after adjusting for external

[educatoraspatient]

Study reveals inequities in breast cancer screening during COVID-19 pandemic

Breast cancer screening took a sizeable hit during the COVID-19 pandemic, suggests new research that showed that the number of screening mam

[educatoraspatient]

The potential is exciting...

[educatoraspatient]

[educatoraspatient]

Overcoming: Life After ____________

This project is about life after whatever interrupted it. For me, it was breast cancer at 39. I survived and am doing well... but it's been a process. During that process I learned to hate the phrase "how is your new normal?" There is nothing normal about this new... because things are different and weird and permanently altered and all of that is OK. Please just don't call it my new normal. For you it may be chronic illness, a car accident, a brain injury, death of a loved one.... how did you overcome? How are you overcoming? I'm collecting quotes, nuggets of wisdom, ways of reimagining your life after whatever it was that interrupted you, so others can use it as a road map, a beacon, or a glimmer of hope to wade through their own interruption. Please feel free to share this link broadly as I think we all need a glimmer of hope and lessons of overcoming these days.

[educatoraspatient]

Personal Insights on Cancer, Chronic Illness, and this COVID Quarantine

This thought popped into my head back in late April/early May (who knows, time is so weird these days)... 

I was noticing how easily I had fallen into this whole quarantining thing… little angst, little loneliness, and few concerns about not going out… upon reflection, I realized I had slid back into the same mindset I had when I was going through cancer treatment… Care packages have been replaced by grocery delivery, but everything else is largely the same… 

You stay home to stay healthy. You nap, you read, you check in with friends, you binge watch television, but you stay home to stay safe and occasionally to avoid the odd looks at your bald head, or the dark circles under your eyes, but primarily to stay safe. 

It wasn’t until I heard about the death of Chadwick Boseman that I felt compelled to share this…

The cabin fever, the anxiety, the stress of not knowing it is safe to go out that has been brought on by COVID… this is what individuals with cancer and many other chronic illnesses feel everyday. 

I hope that quarantining may have given Mr. Boseman, his first chance to lay low… to spend time with family, laughing, trying to stay healthy and trying to overcome the insidious disease that was ravaging his body for four long years. 

But as we continue to adapt and reenter the world… I want you to remember the feelings of uncertainty, dread, and occasional hopelessness and know that there are those feeling those feelings every day even when the world isn’t on fire. 

So please think twice as you complain on social media how much it sucks to be home… sometimes we have no choice… Practice compassion with those you know who are going through treatments or conditions that compromise their immune systems…Send them care packages or texts or silly cards for absolutely no reason. 

We rarely know what goes on behind closed doors… Now that the majority of our doors have been closed for a while, maybe we can know ourselves a little bit more… 

[educatoraspatient]

Health Literacy and Communication Strategies in Oncology workshop: Effective Communication

The National Cancer Policy Forum and the Roundtable on Health Literacy held a workshop on health literacy and communication strategies in cancer care on July...

[educatoraspatient]

Health literacy is the degree to which individuals can access, comprehend, and use information to make health care decisions. However, estimates suggest that more than one-third of the U.S. adult population has low health literacy. Inadequate health literacy can make it difficult for individuals to engage in healthy behaviors and navigate the health care system across the cancer care continuum. To consider opportunities to improve communication in cancer prevention and care, as well as to better support individuals with low health literacy, the Forum is collaborating with the Roundtable on Health Literacy to host a workshop on this topic.

Presented at this a few weeks back. Such a hugely important topic. I spoke about my patient experience, but also my professional/SME perspective that we need to do better and not necessarily more, we need to make things (all the things) more culturally and linguistically appropriate, and (I didn’t think about this until after, but what I want all my Med Ed folks to think about)... We need to modify the paradigm of See One, Do One, Teach One to include How Would You Explain this to Your Patient (in a culturally and linguistically appropriate, health literate manner)... 

[educatoraspatient]

Long-term Survivorship Care after Cancer: Report from the National Academies

Email subscribers, to see the multimedia below, you may need to click the headline to view this online. Last July I participated in a workshop on life after cancer at the National Academies of Sciences, Engineering, and Medicine in Washington. They've just published the final report, Long-term Su

[educatoraspatient]

We Need To Talk About The Rare Cancers, Too |...

It's hard enough to express you've had cancer, but explaining a rare cancer is even more difficult.

[educatoraspatient]

5-years-post-chemo

Five years ago today, I was coming home having finished my 16th out of 16 chemo treatments. It is as surreal now as it was then. I **had** cancer. Past tense, and yet as I have shared countless times it is still with me daily. 

But this is for new thoughts and more next steps... because while it is with me daily, this is the last of the **big** anniversaries... my chances of recurrence are at their lowest and from here on out it is icing... making it to this moment is what was on the ‘to do list’. 

I spent today being as present as possible... a very snowy day outside allowed me to introspective and quiet with my dog, Ella Jane. I got to stretch and flex creatively through my photography (images taken today and over the course of a recently finished epic ART marathon). When cleaning off 4+ inches of snow of my car, I did not have discomfort/pain from the implants nor do they seem to feel crooked due to tense muscles (yay!).. 

My heart is full and my slate is clean. 

I have so much gratitude for each of you.

I know how lucky I am and I promise to continue to share my story and strive to make a difference until everyone can share my outcome. 

thank you, thank you, thank you.

xo

d

[defineyourgrind]

[educatoraspatient]