From Both Sides of the Bedside

On our wedding day five and a half years ago, my husband Matt and I stood in front of our family and friends and declared “in sickness and in health we would love and honor each other all the days of our lives.” Like most couples we hoped that part of our vows would be tested later on in life, but just two years later we were faced with the fight our lives with when I was diagnosed with Stage 2B cervical cancer.

My husband was immediately thrust into the role of caretaker, taking the lead in processing information from the doctors, maintaining our home, taking me to my treatments, and disseminating all pertinent information about my situation to loved ones. All while continuing to work at his very demanding job. His most important responsibility, though, evolved into being the glue that kept me together every day. He was the one I would turn to in my darkest moments to tell me everything would be okay and that I would come out the other side of this. He rarely wavered or admitted he was scared. He was my flight attendant through the turbulence, the one I looked to when things got rocky to stay calm. He was everything that I could not be.

During my treatments and all the glorious side effects I experienced, Matt was right there. He never shied away from a needle or a trip to the bathroom when I needed assistance. He never made me feel self-conscious as the treatments ravaged my body, turning my insides out. Rather, he would consistently tell me I was beautiful. The night we shaved my head in anticipation of my hair falling out, he declared in the most genuine way, “You look so cute!” I was at my most vulnerable with Matt, and his love was unconditional. I learned to lean on him and be comfortable with the dependency.

Volunteering with the National Kidney Walk just two weeks before Matt’s transplant.

Two years after my last treatment concluded, Matt’s kidneys started showing signs of failure and his doctors recommended a kidney transplant. In a selfless act of love, Matt’s sister agreed to be the donor and we scheduled transplant for November 6. Leading up to the transplant, Matt remained calm and steadfast. He submerged himself in the logistics of it to cope with the anxiety. I, on the other hand, struggled to be the same. I was extremely anxious and instead of being the rock that Matt was for me when I was sick, I was slowly falling apart. It was as if my wounds from being sick were being ripped open again. I was angry that we had to embark on yet another scary journey, and I worried I couldn’t be as good of a caretaker as he was for me. When I shared this with Matt, he assured me he would be fine, I could handle it, and that I was strong.

I realized in that moment, it was no longer about my anxiety and me. I had to take Matt’s lead and be the caretaker he needed to get him through – calm, cool, and collected. I was no longer the patient; our roles were officially reversed. I needed to be his flight attendant and handle it all like he confidently knew I could. From then on, I focused on being a pillar of strength and I let him guide us through this experience in the way that made him feel the most comfortable. I often say that after cancer I feel like I am made of steel. Sometimes that steel melts a bit, but in this moment,  it had to solidify.

Matt’s kidney transplant was a success, but recovery was incredibly intense both physically and emotionally. His post-transplant needs were even more demanding than mine were during treatment, and his spirits were put to the test. Matt needed me to help him with all aspects of his day – his medications, eating and drinking, bathing, sleeping, walking, pain management, etc. Not to mention taking his blood pressure, temperature, and tracking his urine output. However, I can say with complete confidence that because of my cancer we were prepared for all of it. I learned quickly how to anticipate Matt’s needs, to push him when he needed a nudge, to cheer him up when he was down, to listen to his fears, to cry with him, and to love him unconditionally through every single vulnerable moment. I learned from the best, and we quickly found ourselves back into a groove of being caretaker and patient. We relied once again on our friendship and strong foundation.

Leaving the hospital after Matt’s transplant.

Being a cancer survivor has shaped who I am as a caretaker because I understand how being so highly dependent on someone can chip away at your dignity. Even if your caretaker is a loved one, a parent, a sibling, a best friend – when you can’t even go to the bathroom by yourself, you are vulnerable in ways you never thought imaginable. This is something I remind myself of when care taking for my husband and am sensitive to. I constantly put myself in his shoes, and believe I am a better caretaker for it.

Five years after promising “in sickness and in health,” Matt and I are more solid than ever. We’ve been to war together, now twice, and have come out the other side. We’ve both played the role of the patient and the role of the caretaker. Neither is easy, but being a caretaker is by far more difficult. It’s difficult to see your loved one suffer, and I have grown an even deeper appreciation for Matt’s strength during my battle. But when you’ve got a strong foundation and you learn to be what your loved one needs you to be, the rest falls into place.

To all caretakers out there, you got this. You’re stronger than you think, and your loved one appreciates you every minute of every day.

Kate Weissman is a two-year Stage 2B cervical cancer survivor and now a Cervivor Ambassador serving as an advocate for the cervical cancer community. She lives in Boston, Massachusetts with her husband Matt and fur baby Giada, and is a proud aunt to five nephews and one niece. She is a Public Relations Account Director by day, and an avid food enthusiast by night. 

 

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.