The Power of Setting Boundaries

This past Fall I was a keynote speaker for the Cervical Cancer Summit and spoke about the development of my three word “Why” statement. Why I keep fighting each day, educating and advocating about cervical cancer so that no other woman has to go through what I am going through. Why I speak up, research, question and give it my all. For me, my why statement is “Know Your Existence.”

I want women – and mothers especially – to know that their health and their checkups are equally as important  as their families’. I want minority women, especially in the Asian culture where  below-the-belt subjects are rarely discussed, to know how important their annual women’s health checkups are. I want women to Know Their Existence matters.

For me, part of Know Your Existence also means know what you need, physically and spiritually.  During my talk, I spoke about boundaries and how important it is to set boundaries with friends and loved ones during your cancer journey. Wherever you are in your cancer journey – initial diagnosis, surgery, chemo, radiation, etc. –  boundaries are extremely important. I did not set up boundaries the first time I was diagnosed and, as a result, I often cared too much about how others around me were feeling and dealing with MY diagnosis.

With my recurrence, it was a whole new ball game. For my own health and my own sanity, I put boundaries in place. It was no longer about how others were dealing with what I was going through. It was no longer making sure everybody else was okay. It was no longer about getting together with friends because I would feel bad or felt obligated. It was now about me and what my soul needed.

Everyone has good intentions. They want to be supportive and helpful, but it’s up to you to let your support system know exactly what you need from them.

Becky with members of her “squad” of support.

I do want to stress the importance of a solid support system. But, it’s important to really be in control of who is in your squad. Overall, I have been extremely blessed to have an amazing support system. They listen to what my needs are. They respect me when it takes me days to respond to a text or call because I am not always in the mood to talk. At the end of the day, they know what boundaries I have set in place and they honor them.

Unfortunately, we all have some people in our lives that I like to call “energy vampires.” These are the folks that, though they may mean well, leave you emotionally drained after a conversation because they have literally sucked out the little energy that you do have. When dealing with the trauma and hell that cancer brings into your life, there is no better time to draw some strict boundaries around these folks and the access they have to you.

Unfortunately, I’ve come to learn that some people are just drawn to other people’s suffering and pain and only “show up” because at the end of the day, it really is about them and not you. These are people who might show up for a visit, but at the end of the day leave you feeling like the visit was only to make themselves feel better rather than to make you feel better.

I learned this first-hand when I had a few people who wanted to be there for me only on my chemo days. Almost like they wanted some sort of credit for showing up and sitting with me. Sorry folks, this isn’t school and you don’t get credit for just “showing up.” It is wonderful to have your solid support come visit and sit during those long chemo days, but make sure the people visiting are there for the right reason: YOU. If you want to take a nap while someone is visiting, take a nap. Don’t feel the need to entertain someone. Boundaries people, boundaries. There is no better advocate for yourself than yourself, remember that.

At the end of the day, I just want everyone, not just those who are going through trauma to truly understand how important boundaries are in our lives. I want people to know that it is okay to set boundaries for yourself and to not feel guilty about it. Know that you matter. Know that your voice matters. Know Your Existence.

Becky was originally diagnosed with cervical cancer in 2018, at age 35, and quickly became an active member of the Cervivor community, joining Facebook Group discussions, attending Meet Ups, participating in the September 2019 Cervivor School and becoming a Cervivor Ambassador. Read her Cervivor story and learn how she brings her passion and Cervivor Spark to help stop cervical cancer.

Through the Eyes of a Caregiver

When I was asked to share my thoughts on what cancer is like from the perspective of a caregiver, I thought back to what life was like with my husband prior to his HPV-derived throat cancer diagnosis, when my care giving consisted of making meals for our family, doing laundry, going to school events, and other typical family care giving activities.  To say the least, life was good!  Jon was a successful sales and marketing executive who spent a lot of time working, traveling, talking, reading, golfing, exercising, laughing, cooking and generally always having fun no matter the setting or the audience!  He was a strong, smart, driven and compassionate man who loved being a husband and father.

As you can imagine, Jon’s cancer diagnosis came as a complete shock!  The business trip that was scheduled for the following day was quickly cancelled so we could absorb the news, talk with our son, and begin scheduling appointments with oncologists and surgeons.  The countless medical appointments were a blur…so much information to digest, so many possible side effects from the 7 weeks of radiation and 3 chemo treatments that suddenly replaced the spring break trip, work travel, business meetings and family gatherings on Jon’s calendar.

I wasn’t thinking about what the treatment plans were replacing on MY calendar…because I didn’t have cancer, my husband did.  However, I quickly learned that my schedule as a caregiver would become dependent not only on Jon’s treatment schedule as a cancer patient, but also on the consequences of that treatment on Jon’s ability to function as he had for the previous 25 years of our marriage.

Absolutely nothing or no one could have prepared me for watching Jon suffer as his entire being was consumed with fighting cancer…from the physical to the mental to the emotional…it was the fight of, and for, his life.  As his wife, I was so focused on caring for my him and keeping life as normal as possible for our 16-year-old son, that I was unaware of the physical, mental and emotional toll that cancer would have on me.  I would not understand this until well after Jon was back on his feet…when he was able to go on his first business trip after a full year of being “grounded”.  While Jon started back to work, and Matthew continued his busy high school schedule, I found myself sitting at home wondering what my purpose was!  It felt as though I was no longer “needed.”

For almost a year, Jon NEEDED me!  He needed me in a way that I could have never imagined. I never could have imagined my husband being unable to drive or travel, unable to work or think, unable to speak or swallow, unable to parent or be a loving spouse…. basically, unable to participate in life.  Putting it bluntly…. treatment sucked! The mental and emotional burden of watching my husband slowly disappear before my eyes was hard….no meals together, no drinks on the deck, no one with whom to discuss the ups and downs of life, no one to help me keep our son’s life as normal as possible when there was nothing normal about it…it was the loneliest time of my life!

Fighting cancer is hard work…for the patient and the caregiver.  Jon had an amazing medical team and caregiver (yep…that’s me!) that developed a treatment and care plan to provide him the best opportunity to win the fight.  Caregivers, please remember to care not only for your loved one, but also for yourself. The better you care for yourself, the better care you can give to your loved one.  We caregivers are stronger than we think…but we should never think we are so strong that we don’t ask for, or accept, help from others.  People want to help…so let them!  Let them feed you, shop for you, sit with your loved one while you sleep or shower or exercise or go to church or have lunch with a friend, or do whatever it is that fills your bucket.

Speaking from experience, I underestimated the value of self-care.  It was hard to think about leaving Jon, even for an hour, when he needed me more than he ever had.  I promise that you will be a better caregiver if you take time for you.  It is not selfish…it is necessary!  It will allow you to move forward when they don’t “NEED” you anymore because they are able to go back to living their lives.

Kris Scharingson is a graduate of Central College in Pella, Iowa and Iowa State University.  She is currently serving as the Volunteer Chair of the ACS HPV Cancer Free Volunteer Work Group and is serving as the sponsorship chair for the Relay for Life of Ankeny.  Kris and her husband Jon have been married for 27 years and have a 19 year old son Matthew and a 12 year old puppy named Griffey.