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.

Because I love her.

The conversation had started off as well as these things normally do. I was standing in my studio getting ready to work on some new music when she called.  We said our hellos and asked each other what the other one was doing. Then she paused a moment and breathed hesitantly, yet with a firmness of practiced thought and review.

“Before we go any further, you need to know. I have cancer.”

As I’ve come to know over time and experience in being part of the caregiver community; no one fully knows what their reaction will be. There is the conscious utterance of sorrow, shock, and surprise. Yet in the subconscious, an obfuscation of thoughts and emotions spill without measure throughout the very fibers of your being. Fear and ignorance of the details of the situation that you’re now facing, no matter how grand or subtle, eats away at the very thing that you hold dear with that person.  The very love and hope that you’ve invested towards them, is compromised; in ways that are completely and thoroughly incomprehensible to you as you stare in the incredible gravity of those words they just spoke.

As I’ve also learned in being part of this community now; the fear, uncertainty, ignorance and misunderstanding; has caused many to walk away from their loved ones. I’ve been told stories about how so many husbands have walked away from their spouses, children have blamed their mothers, and communities have shunned them in whispered rumor and judgement stricken with the narrow doctrines of puritanical ideologues.  These women who have become victims of cervical cancer and other HPV related diseases were now the sorority of Holly Lawson. This beautiful and vibrant woman whom I just had met for a date at some innocuous local pet store and had a small dinner date with at Fuzzy’s Tacos only days beforehand, was suddenly telling me that she was now stricken with a disease that I had only passing awareness of. This woman that made me laugh and smile like no other, was now entwined within a somber embrace to a vessel of suffering that humbles all who linger in its shadow that does not fade.

Holly was scared, though she held it well. If one only glanced she appeared mostly unaffected in passing. Yet I know fear. I know death. I know suffering. I know despair. She could not hide it from me.

“Oh my God. I’m so sorry…”

“If you don’t want to meet me anymore I…..”

“When can I see you? Can I come over later tonight, well it is getting late. How about tomorrow?”

“Wait. Didn’t you hear what I said?”

“Yes, I did. So when can I see you?”

“Aren’t you afraid or something? I mean, I just told you…”

“Yes I am, but I am not going to give up a chance on love because of this. Well just see where this goes, we’ve only been on one date so far, well technically 352 dates already…. Besides, I know this great taco shop called Rusty…”

That was our first real conversation. From there I watched in awe as she battled every day an enemy that I could not kill.  I waited with her as she lingered between states of consciousness and awareness in almost every area of her hospital and various clinics.  I held her hands as she trembled from infections that caused mortal pain.  I looked on in absolute shock and sadness as she bore the Frankenstein like scars on her body of what the doctors had to do her physically, to keep her alive.  I held her as she cried, awash in depression, anger, fear, hate, and confusion at her own family and friends who were not there with her and did not appear nor could they truly understand what she was living through, and the battles that she won and lost in a war for everything she was. I watched as cancer broke her and everything that she held onto from a previous life — that seemed so distant and blurred with fondly recalled memories; seemingly fading a little more with each passing day where she lingered in its suffocating shadow. I watched Holly survive.

“Before we go any further, you should know; I have cancer.” 

That sticks with me every day. Cancer is not something that goes away just because you have gotten some sort of treatment.  It lingers in your thoughts, it colors the sky teal, it fuels contempt at the world, it makes you smile with your arms linked a fraternity of those caregivers who stayed — who want nothing more than to comfort and ease the wounds and scars inflicted upon the women they love so desperately by a villain that they cannot kill.

As a man, I have found that being a man is much harder than it appears by birth-rights. Charging into a fire, running towards gunfire and putting your physical life on the line does not ultimately make you a man. Nor does it really make you courageous and worthy of praise.  That is because when one finds themselves in the moment of fight or flight, you either do or do not.  The try part is left to the others who endeavor to make sense of the ways which you have to make that decision in the first place. In my opinion, being a man is standing there with the woman you claim to love and care for, and help her walk down a linoleum hallway in the middle of the night with the stench of chlorine and sterility holding her hand as she struggles to stay conscious and upright. It’s holding the catheter bag filled with despair and fragile hope. Being a man is running to every CVS, Walgreens and 7-Eleven trying to find a back scratcher for her to use on her legs as she cannot bend down to reach them while she lies between fits of incredible pain to dimly coherent conversations laced with the morphine that eases some of the suffering. Being a man is staying awake all night to rub her back as gently as possible, so that she may rest for even just a moment; knowing full well that your workday is going to be pure hell after driving at least an hour one way just to get here on time. I’ve discovered that many men have not done this. They walked away. They have left the mother of their children and their partners of some years because she has suffered a blow to her very existence. A man does not harm his partner and does not leave her side because she is suffering through something that she did not cause.

Holly did not invite her fate, she was a victim of life, as we all are. If I could not give her a chance, give myself a chance, and give love a chance; then everything that I’ve ever stood for and have ever believed and have fought for is truly worthless.  It means that ultimately, I do not care about love. It means that truly, I cannot love. However, as we all want love, so do I. Because of Holly, I believe in love and the absolution of what that means.  I believe in love, not because of some mythical story of dragons or starry-eyed fairytale of gowns, but because I believe in what is right and good about this world and our place in it and to me that means that you have to believe in it for its very sake; not because someone told you to do so. From what I’ve seen in life, this is not really taught to anyone in ways that they can truly embrace unless they have experienced it for themselves. So, in the end, the very thing that keeps me; is that I truly believe in love.

I believe in what Holly is. The same woman that made me laugh and smile; and think; and fuss and curse — and all of it. I believe in life again and all of the beautiful and horrible things that it brings us. Not because I was told to. But because I met Holly. When she survived, so did I. Why?

Because I love her.

Addendum

“Before we go any further, I have to tell you something. I have cancer again, it came back.”

“Really? F***. Ok. Let’s go to Fuzzy’s… I kinda want to try that new burrito bowl. It doesn’t look like the one from Chipotle, but hey let’s try it anyway, we should get nachos too…. The pork ones.  It’s going to be a long day between Dr. V’s office and the cancer center. Hey, hold on let me get the door… there you go, the seat belt is back a little far so I don’t want you to stretch too far, you’re still in your belly.”

I kissed her gently as she sat in my car.

“I love you, Holly. Everything is going to be alright.”

Check out Holly’s story here:  www.cervivor.org/holly

Claude Swain is a writer, actor, and musician who hails from Rocky Mount, Virginia and now resides in the Dallas-Fort Worth area, with Holly and their fur baby, Luna. He is a Marine Corp combat veteran and attended Virginia Tech. Claude has played in the Richmond Symphony and is an active part of the Dallas music and arts scene. He is a wine enthusiast and cigar aficionado, who has never met a taco he didn’t like. He is currently the Sr. Site Development Manager for Tillman Infrastructure in Carrollton, Texas.