Coping with Cancer in our Modern World

https://searchengineland.com/77-percent-of-online-health-seekers-start-at-search-engines-pew-study-145105 

Can you imagine—in a not-so-distant past—how difficult it must have been to be diagnosed with a deadly illness and having no access to others who were experiencing a similar health condition? For an unfortunate number of people this reality still exists, but for many, the internet has changed everything.

I sometimes think how afraid and isolated my great grandmother must have felt as colon cancer took her life, or how frightening it was for my grandmother to have only her doctor’s experience and knowledge of her condition to guide her during her treatment for uterine cancer. I wonder how alone my mother must have felt or how maddening it must have been to not have information easily obtained about her diagnosis and treatment for ovarian cancer in the 70’s. It must have been hard for my dad to cope with lung cancer in the early 90’s having no one to talk to who was experiencing the same horrible disease that killed him. Without access to social media to educate, guide and comfort me, I am certain my experience with cancer would be far different and far more challenging.

Today people can connect with others all over the world experiencing similar health situations. It helps people find someone of which to share a “me too” moment. On-line support groups give members the ability to ask questions about side effects from treatments or find help in making treatment decisions. People can vent easily about their insurance plans being inadequate, or share that a pharmaceutical company has agreed to help them with the costs associated with their life-saving drug(s). Questions about pathology or scan reports that have unfamiliar medical terms can be easily understood by finding someone who can clarify the meaning or by simply typing the word into a web browser. How wonderful it is to read about the newest research, clinical trials and new drug information shared by a Facebook group member or by someone you follow on Twitter. There is a freedom and emotional release in being able to blog about the resentment and frustration you might have about an oncologist that does not want to order an MRI to look for brain metastases because you have no symptoms and saying if something was found it would complicate your current treatment plan. (It is as if she said, “If there are any mets to your brain, we will just let them grow willy-nilly. Why worry until we have to—ugh.)

Also, you never know what you might find simply lurking and learning from reading the posts and comments of others. Sometimes I participate in discussions, other times I lurk. On one particular lurking day I came across a discussion on Inspire 's Advanced Breast Cancer Group. An active member, Best Bird, wrote about Cyberknife and lung metastases giving me a treatment to consider if my lung mets ever grew. Well, my remaining one did. My asking if the progressing nodule could be zapped by Cyberknife completely changed my life, presently NED--no evidence of disease. My oncologist had not given any thought to radiating that nodule. If not for the happenstance of my reading Best Bird’s words, I would have never known about it. I would have moved on to the next standard course of treatment, and who knows if I would be alive today--thanks Best Bird!.

Recently an article from Healthline called The 2017 The State of Cancer Report: The Impact of Digital Information and Patient Support Networks by Ann Pietrangelo and Whitney Akers came to my attention. It reported the results of their survey of 1500 people. The participants were either living with cancers (not just breast), considered a survivor or were caregivers. The questions were designed to determine each individual’s engagement in social media and the reasons for their use of it.The participants were grouped generationally to see if age was a factor in social media activity. Among those surveyed there were 500 Milennials also called Generation Y (approx. ages 18-36), 500 Gen Xers (ages 37 to 52), and 500 Baby Boomers (ages 53-71). The article provides percentages of the number of participants who used social media to make decisions about their doctors, treatments, hospitals and if the internet was used to find information about new drugs, therapies, and clinical trials. Using social media for emotional support was also evaluated. It includes statistics on which generational group was most active. In my own search to find people my age (53) with the same condition (Her2 neu breast cancer), I found out quickly my generation, Baby Boomer, isn’t quite as involved as Millenials. The possible reasons for this are mentioned in the article. It is a lengthy read, but if you can get to the end, you will probably see your reasons for using the internet described within it. Be prepared though to feel a bit left out of the conversation if you are stage IV like me. The article focuses on people during and after cancer. There is no after cancer with stage IV.

I think the most important trend that has developed over recent years in healthcare is the practice of a more patient-centered approach to care allowing patients to be part of the decision making process. The article points out that 62% of Boomers and Gen xers who participated in the survey prefer shared decision-making about their treatments. I think this change is a win for patients everywhere.

Please visit my new page on the bar above to find some social networks that might be able to help you during a time of need.


*Note: Please check with your doctor about any advice offered about treatments in these social groups. I do not want you to take supplements that may impair how your conventional therapy works or encourages you to waste your money on a hope for a cure that has not been proven to affect your specific type of cancer.

Opening Doors to a New Chapter

At five in the morning, on January 3rd, the last of my three oldest children left my home heading for her new apartment in a new city soon to be starting a new career. Prior to this change in her life, she was teaching in Japan. Before she left for Japan, I would tell her, teasingly, not to fall in love with a Japanese boy--I feared she would not come back to live in the states again. Turns out she didn’t meet a Japanese boy. Instead she met an American boy—an American boy in Japan, surprise! Both are back in the USA, and she has accepted a job in his home state. At least that state is only one time zone away from me instead of the 12 hours that Japan is making communicating sometimes tricky.

Watching my three oldest children leave my home to travel to their new homes is always a hard process for me. I become excited then I grieve. I become acquainted with happiness again upon remembering they have successfully made the transition to adulthood, and my job is done. When I brought them into this world, I knew at some point my children would leave, however I never fully explored how I would feel or behave when it happened. It was a door I wanted to remain shut. With each choice they made on their way to adulthood that door kept trying to open despite my holding tightly to the knob on the other side. It hurt the first time they left, and it hurts now even as I have learned to accept their living far from me in three different northern states—daughter #1 in New York, my son in Maryland and daughter #2 in Illinois.

Daughter #3 has a few years before she is off to college, so my home is not void of children yet. In September she also experienced a change in her life causing me to be able to spend less time with her—another opening door only this time it was forced open by me. After much thought, I decided to stop homeschooling her. Not because I no longer enjoyed teaching her or learning was not taking place, but because I wanted her to have a routine she could focus on if my health went in the wrong direction. Together, we worked to complete the application required in order to attend an early college high school program. She was unsure, but I knew this was the right thing to do. When the acceptance letter came in the mail she expressed remorse to no longer being schooled at home. I shared in that remorse, but also found I was relieved—still am; her next four years had a set course that would go on if I could not. She recently completed her first semester with an “A” in every class. It has been a wonderful change for her leading to my decision to seek a change in my life’s routine, too.

Never did I think I would be able to do this again in my life, but in November I applied, interviewed, and was hired to assist in teaching in a 21st Century Community Learning Centers Afterschool Program in a local public elementary school. In mid-December I worked four days before the Christmas holiday season began. It made me feel I was contributing to society again while also adding to my family's income depleted by my medical bills. 

As I prepared to settle into my new routine with the beginning of the New Year, snow fell upon the East Coast including my state of North Carolina. Students went to school and then were sent home due to the predictions of traveling conditions worsening all before I set foot through the doors of my new employer in 2018. I must admit, it was a nice bonus to have a few extra days added to our holiday time and a nice reminder that every time my daughter is out of school, I am off too. Nice right?

When snow falls and the temperature is just right, snowballs and snowmen must be made. My daughter and I had a blast building Mr. Snowman with the rare three inches of snow that fell on January 4th.

Scans for me are January 29th. I don’t want to think about progression, but unlike my children one day growing up and leaving home that I tried not to think about, I have to open this door because if I don’t I may take too long to recover from my resulting grief. I role-play in my mind how I will react if the news is good or if the news is bad. If the news is bad, I know I will revisit despair, but I also know I will not travel there too deeply because I have already been there. I know now, too, I must stay focused on the things I wish to accomplish in my mortal life. In the meantime I will continue hoping for "no evidence of disease" on this next scan. If it isn’t then I will deal with whatever that entails and deal with that new chapter. 

Perhaps it is cliché to talk about life’s changes as chapters, but for me that is truly the best description of all the changes that happened in 2017. My oldest children are working and doing adult things; my youngest is now in public school; I am getting paid to work. These are huge changes for me; ones I never thought I would see. Changes that have given me a new chapter in my life that hopefully will continue for the 360 days left in 2018. Maybe even beyond.