Caregivers – Living Well While Surviving Cancer

Coronavirus Thoughts from a High-Risk Perspective

As older and less-healthy adults, what are we to do?

On Tuesday, we looked at the coronavirus in terms of facts versus myths. Now, we offer coronavirus thoughts from a high-risk perspective.

As those of you who read Living Well While Surviving Cancer already know, the author of this blog (Joel Evans) is a pancreatic cancer survivor with a compromised immune system. As well as a Type I diabetic. And a senior citizen. That puts me in the highest-risk category if I contract COVID-19.

Something else to worry about. Or not. After all, what am I supposed to do now? I refuse to lock myself in my house. But what smart things should I do?

Psychologically, I was fine until the CDC issued an advisory for older adults. According to a CNN report:

[On Thursday March 5, 2020] “Amid a coronavirus outbreak in the United States, the U.S. Centers for Disease Control and Prevention is encouraging older people and people with severe chronic medical conditions to stay at home as much as possible.'”

“This advice is on a CDC Web site, according to a CDC spokeswoman. Early data suggest older people are twice as likely to have serious illness from the novel coronavirus, according to the CDC.”

“The CDC guidance comes as two top infectious disease experts with ties to the federal government have advised people over 60 and those with underlying health problems to strongly consider avoiding activities that involve large crowds. Dr. William Schaffner, a Vanderbilt University professor and longtime adviser to the CDC, said these two groups should consider avoiding activities such as traveling by airplane, going to movie theaters, attending family events, shopping at crowded malls, and going to religious services.”

Also, check out the CNN video.

My Advice to Myself

In light of the CDC’s warning and my health status, what am I to do? My answer for ME (which may be different than your advice for YOU) is to BOTH be smart and live life every day.

I will go out to restaurants, but not to movie theaters. Linda and are rethinking our vacation plans and not going on the cruise we were planning. Also, the thought of air travel does not excite me. I will wash my hands more often and more thoroughly. I will continue my volunteer work at United Cerebral. I guess I will fist pump rather than shake hands, even though this seems somewhat silly to me.

When I started thinking about doing this post, I looked for information from AARP. And as expected, it has a terrific section of its Web site devoted to COVID-19:

“Older Americans and adults who take routine medications to manage chronic conditions, such as high blood pressure and diabetes, should make sure they have ‘adequate supplies’ on hand as the number of confirmed COVID-19 cases continues to climb in the U.S.”

“Avoiding sick people and washing your hands often are two preventive strategies public health experts have been pushing to help slow the spread of COVID-19. Older Americans living in areas that are experiencing spikes in coronavirus cases may also need to think about the actions they take to reduce exposure to the virus. This may include social distancing strategies, such as teleworking and avoiding large public gatherings.”

“Health officials also advise taking everyday steps that can prevent the spread of respiratory viruses. Wash your hands often with soap and water (scrub for at least 20 seconds), and use alcohol-based hand sanitizer when soap is not an option. Avoid touching your eyes, nose, and mouth with unwashed hands. And cover your coughs and sneezes. “

Click the image to read a lot more from AARP.

I Am Now a Five-Year Cancer Survivor

Hope is a precious commodity.

Amazing. Unbelievable. Lucky. Blessed. I am now a five-year cancer survivor. Although some define the 5-year period as beginning at the date of diagnosis, I prefer to use the date of my Whipple surgery for pancreatic cancer. February 12, 2015. So, exactly five years ago today.

I am kind of melancholy about reaching this point. But I don’t feel the euphoria about beating the less than 10 percent survival rate for PC that I expected. I just learned this is not uncommon. According to Dr. SP, a leading psychologist, my melancholy reflects a lot of subconscious feelings about the traumatic events during my journey. Even though I try as hard as possible to be upbeat on a daily basis. Also, it relates to my profound sorrow about others with cancer who have not been so lucky. And my own continuing challenges.

Live life every day. Live as long as you can, as well as you can.

Observations about Surviving Cancer

From Cancer.Net:

“A person who has had cancer is commonly called a cancer survivor. ‘Co-survivor’ is sometimes used to describe a person who has cared for a loved one with cancer.”

“Not everyone who has had cancer likes the word ‘survivor.’ The reasons for this may vary. For instance, they may simply identify more with being ‘a person who has had cancer.’ Or if they are dealing with cancer every day they may describe themselves as ‘living with cancer.’ Therefore, they may not think of themselves as a survivor. Living with a history of cancer is different for each person. But most people have the common belief that life is different after cancer.”

“Other common reactions that people have after cancer include:

- - - - Appreciating life more.
        
        Being more accepting of themselves.
        
        Feeling more anxious about their health.
        
        Not knowing how to cope after treatment ends.”
    - Now, check out this video.

My Latest Adventures — Part Two

Hail to the caregivers. 🙂

On Tuesday, we presented part one. Today, we offer my latest adventures — part two. It is dedicated to my wife Linda, the LOML (love of my life).

Here we are together, as highlighted from my Facebook page.

My Latest Adventures — Part Two

Linda as Caregiver

Throughout my journey from pancreatic cancer patient until the present, Linda has been GREAT. Both physically and emotionally. Hail to the caregivers, who are often underappreciated. People always ask how the patient is doing, but fewer show concern for the caregiver. But I do, I appreciate Linda and all she does; and I realize the strain my condition places one her.

For my latest adventures — involving knee replacement surgery, these are just some of the activities which Linda has done:

- Drove me everywhere we needed to go. That included multiple trips to the Hospital for Special Surgery in Manhattan, which is 50 miles from our home.
- Stayed in a hotel by herself for the days I was in the hospital after the surgery. This meant using Uber to get around.
- Shopping and lifting groceries, cat litter, and other heavy items that I could not help with post surgery.
- Going up and downstairs at our home multiple times daily to help me after I was discharged from the hospital.
- Worrying about me going up and downstairs, being overly tired, etc.
- And MUCH more.

Linda, you are appreciated.

Do NOT Say This to a Person in Pain

FIFTEEN tips to be more thoughtful.

Speaking from personal experience, I have had people say various hurtful things. Or things that are not helpful. Often unintentionally.

For example, as Linda Esposito notes for US News & World Report:

“People with chronic pain have heard it all – over and over. Acquaintances say, ‘You look fine to me,’ or ask, ‘Why aren’t you better yet?’ Doctors and nurses advise, ‘There comes a point when you must accept a new normal.'”

“For someone coping with continual pain, possibly for years, none of this is necessarily original or helpful. You may know someone with chronic pain and just not be sure what to say. Read on as people living with pain share their biggest pet peeve remarks from family, friends, and health care providers – and suggest more thoughtful, supportive comments.”

Click the image to learn FIFTEEN things not to say.

Do NOT Say This to a Person in Pain — Credit: Getty Images

CVS Pharmacy Ups Its Game

CVS’ new HealthHUB

In 2019, there are fewer large chain pharmacies than ever before. Nonetheless, the competition is intense among giants such as CVS and Walgreens.

Thus, for example, CVS has been upping its game in major ways.

As CVS reports:

“The company is opening HealthHUB^® locations that offer a broader range of health care services, new product categories, digital tools and on-demand health kiosks, trusted advice ,and personalized care. With the new format, over 20 percent of the store is now dedicated to health services, including new durable medical equipment (DME) and supplies and new product and service combinations for sleep apnea and diabetes care.”

“With personalized Pharmacy support programs and MinuteClinic services, the HUB team is improving care for patients managing chronic conditions, with a focus on recommending next best clinical actions and driving medical costs savings.”

“The new store format also includes a variety of pathways to nutritional health with one-on-one and group counseling delivered by an in-store licensed dietitian, as well as access to a free weight loss digital app.”

“Acting as the connection point inside the HealthHUB^® is the Care Concierge, a newly established professional responsible for customer engagement, including educating customers about our new service offerings, helping them navigate the in-store services and events, and connecting them to our in-store providers.”

The following video provides an overview of the HealthHUB.

Getting Your Health Care Provider to Be More Responsive

A resource for getting your medical records.

Have you ever had trouble getting a health care provider to give you the information you asked for? In fact, many people have.

That is why Ciitizen.com created the patient record scorecard.

According to FierceHealthcare,

“As the former head of healthcare privacy policy at the Department of Health and Human Services, Deven McGraw led efforts to issue guidance on the right of individuals to access and obtain a copy of their health information. When McGraw joined technology startup Ciitizen two years ago, she realized the efforts by the Office for Civil Rights to educate patients and industry stakeholders about the “Right of Access” had done little to reduce friction for patients, McGraw wrote in a Ciitizen blog post.”

“But as Ciitizen — which helps patients collect and share their medical records digitally — started helping its initial beta users gather their medical records, the company encountered countless roadblocks from providers refusing to accept requests by fax or email to others imposing fees that are not compliant with HIPAA, McGraw wrote.”

Click the image to read more.

Getting Your Health Care Provider to Be More Responsive — (Getty/anyaberkut)

Behind the Scenes at Thrive Global

Be inspired. Includes a podcast.

Thrive Global is a popular Web site founded by Arianna Huffington, after establishing the pioneering Huffington Post site (now owned by Verizon).

As Huffington puts it:

“After my collapse from sleep deprivation and exhaustion in 2007, I became more and more passionate about the connection between well-being and performance. And as I went around the world speaking about my experience, I saw two things: First, that we’re facing a stress and burnout epidemic. And second, that people deeply want to change the way they work and live… That’s why I launched Thrive Global – to go beyond raising awareness and create something real and tangible that would help individuals, companies, and communities improve their well-being and performance and unlock their greatest potential. At Thrive Global, helping you achieve these goals is our mission and our passion.”

Here’s one example of a recent Thrive Global article. “How to Reap the Mental Benefits of a Vacation Without Actually Going on One.” Click the image to read it.

Behind the Scenes at Thrive Global — **If you’re unable to plan a trip at the moment, don’t stress about it — and don’t underestimate the power of a staycation. Photo by Happy Dancing/ Shutterstock**

Meditative Story Podcasts

Recently, Thrive Global became a partner for a new Web site intended to reduce stress:

“Meditative Story is a completely new kind of listening experience that blends intimate first-person stories with mindfulness prompts, enveloped in beautiful music composition. Every week, subscribers will receive a new Meditative Story from a storyteller who will transport listeners to the time and place where everything changed for them — a story that may be deeply relatable to the listener’s own life. As the story unfolds, mindfulness guide Rohan Gunatillake (founder of the popular Buddhify meditation app) offers prompts to calm the mind, and help listeners connect with their own observations.”

“The entire experience is elevated by gorgeous music. Shifting between music and vibration, the exquisite sound design rides above the narrative, bringing each Meditative Story to life and giving subscribers the head space to feel restored and refreshed. Meditative Story is a WaitWhat original series — created by the team who built and led TED’s media organization — in close partnership with Arianna Huffington’s Thrive Global. The series is made possible with generous support from Salesforce.”

Here is an example:

“A mesmerizing story about the wisdom and delight you can find — even in the midst of tragic loss — by seeing life and death through the eyes of a child. Storyteller Lucy Kalanithi is the widow of Paul Kalanithi, who wrote the best-selling memoir When Breath Becomes Air, published posthumously in 2016. This story is a coda to his memoir.”