Words Can Sometimes Hurt Me

Whenever my children asked me a random question, they knew the first answer out of my mouth would be, “I bet there is a book for that!” I am a big book worm. I want to recommend books to strangers whenever I’m in a bookstore, but I have learned that I sometimes scare people, so I stop myself from pointing out what I think is a better choice. When my husband Jim was diagnosed with NET cancer in 2004, I found books on living with the uncertainty of cancer, improving your nutrition, and what to ask your physicians. What I did not find was a good guide on talking to one another about the cancer life. (Don’t tell my kids that books failed me in this case.)

Before we had cancer in our lives, I never would have expected a conversation with a well-meaning friend to hurt my heart. As I was hugging a good friend of Jim’s goodbye one day, he leaned in and said, “Take care of my friend. Don’t let anything happen to my buddy.” He meant nothing sinister. I didn’t take it as a threat. I knew he meant he loved Jim and wanted him to be okay. What he didn’t know was this: my heart crushed into a thousand pieces. How could he know that I worried about this above everything else? That I could drop the ball on his care, and he could die. I knew that our circle of family and friends were aware that I was doing what I could, but at the same time I also felt enormous pressure—much of it from within me, but Jim’s parents were also looking to me to take care of everything, and I was working so hard to protect our children.

I broke down in a puddle of tears that day. The simple fact is, I wish he would have leaned in and said, “Karalyn, you are taking such good care of my friend, and I am here if you need me.” (And what if he also said, “I’m sending you on a trip to Hawaii? Lol)

Honestly, these kinds of conversations got me thinking about how what we say to one another in a world with cancer really does make a difference. Even words spoken with love and well meaning can hit a sensitive nerve. We are more sensitive when we are tired and worried and overwhelmed. How does one go about changing the narrative on things that serve no use to the person living with cancer or the ones who care for them?

There is a lot of conversation about appropriate cancer talk. War metaphors are common, like “you will beat this,” “fight,” and “losing their battle.” Sometimes words like “survivor” or “beating cancer” feel good for one person but can mean to another that they or their loved ones somehow failed. Some prefer a message of “living with cancer” and finding a way of making peace with it. Honestly, if a friend asked me to saddle up for battle for their loved one, I would ride at dawn, no questions asked. By the same token, if someone asked me to be sensitive to how we discuss the issues at hand, such as to say, “living with cancer,” I will listen and do my best to be mindful.

If you are the patient or caregiver, you can simply lead with what makes you comfortable. I encourage you to send an email explaining how you are approaching your experience. Everyone wants to be loving and proactive and compassionate, and we can help by taking responsibility to make the tone known. Let friends and family know what dialogues bring you comfort and what metaphors you may be steering away from. Encourage them to ask questions. However you are approaching the conversation or metaphors of cancer, please help one another communicate what works. It is freeing to know you don’t have to worry about a hard phrase that may sting in times of worry. I can say that the NET community is beyond amazing and can have these discussions.

In our home, we did receive a lot of advice and some phrases that didn’t fit with our choices, but we knew everyone loved Jim. The mama bear that I am, I did have a few conversations about protecting my boys from sayings like “you are the man of the house now” or “your dad will fight and beat this.” We chose to accept NET cancer was cohabitating in Jim’s body, no matter how we wished it wasn’t true. We tried to respect its tenacity to camp out. We were always trying to lessen its severity or symptoms, and Jim made peace with this and lived his best life for a long time alongside it.

I hope you have a lovely autumn and take good care. Hey, I know there are great books about leaf peeping and baking apple pies out there!

Karalyn and Jim Leaf Peeping

National Cancer Survivor Month and a Legacy of Learning

June is National Cancer Survivor Month. I am so happy if you are reading this article as a cancer survivor–someone living with cancer–or are part of the base of support for a survivor. These recognition days or months can be hard for those of us whose loved ones have passed away, but recently so many things have shown me that my husband Jimmy still happens to be reaching into my life in beautiful ways.

Jim was a member of the International Union of Elevator Constructors (I.U.E.C.). His work life was demanding. There were a lot of safety rules that had to be followed. There had to be effective communication and teamwork and also personal confidence and strong decision making skills. Jim supported and relied on his union family, and the union believes in taking care of one another. In that spirit, his union chapter, I.U.E.C., Local 18, donated the funds to start the Healing NET Virtual Neuroendocrine Cancer Tumor Board.

This is a program for medical professionals to learn from one another. Physicians, advanced practice providers, nurses, and other medical professionals are invited to attend if their work includes caring for those with neuroendocrine cancer. Providers can present a case in an online multidisciplinary tumor board led by experienced clinicians and discussed with colleagues from across the country. The benefits are across the board. Although patients cannot attend, patients from across the country will benefit as the medical professionals exchange ideas from their different experiences, disciplines and approaches. Their level of knowledge and dedication is awe-inspiring. These physicians work tirelessly, and the fact that they can enjoy a sense of community in the tumor board is really important. Jim would always ask all of his doctors from different states to talk to one another, so I feel Jim is close by when there is a professional and passionate discussion on a case. This gift from the union is making one of Jim’s dreams a reality.

I would like to personally thank the I.U.E.C, Local 18, for their donation and Dr. Eric Liu and Healing NET for starting this amazing program. Being a part of launching this program has given me peace and pride. I feel connected not just to Jim during these meetings but to all patients and caregivers. Even though the reminders of Jim not being here to hug during National Cancer Survivor Month are hard to ignore, it is tangible to me how he lives on in his friends, his union and my work here at HNF. He lives on through the stories I hear from his union brothers and sisters. He shines through my children's eyes and the tone of their voices. There is a sense of his beautiful energy in my life. May you all feel your own importance during this month and the importance of your loved ones that have passed but are still remembered and shaping our world.

The Costco Chicken

My husband Jimmy has been on my mind and in a lot of my conversations recently. His birthday was last week. Family birthdays, the day we got married and the anniversary of his passing all bring up feelings of loss. My HNF team, Mia and Margaret, suggested that I write occasionally about how I have experienced grief. As always, I hope you find something relatable or helpful through my experiences.

One of the things I have learned about grief is this: It is its own boss, and its timing is not up to the griever! I thought I would have some sort of control over where and when I would be sad or upset, but grief decided to show up strong when I would least expect it.

Who knew that going to the grocery store would be such a trigger? Soon after Jimmy passed, I walked into our local Albertson’s and got about 10 feet in the door and almost fell to my knees. The feeling is not something I can explain. I felt like I couldn’t hold myself up. My overwhelming sense of loss won that day. I ended up running to my car and heading back home.

I tried Target a few days later. I made it in the door and all the way to the soap aisle. Panic set in as I thought about soap. What kind do I want? Do I buy the same soap with the scent I loved to smell on Jimmy when I would give him a hug as he left for work every morning? Did I want to try something new that reflected my own liking instead? I stood in the soap aisle sniffing every bar they sold at least twice. I ended up in tears and left without soap. Without groceries and soap, things could get pretty grim!

Fortunately, I ended up using a grocery delivery service. One of the costs of grief for me was paying someone to shop for me. I did some research and discovered that shopping was a very common trigger for a grief episode. Like many before me, I didn’t realize how much shopping for essentials is an act of love. It was not for my own well-being only. For 30+ years, it meant my husband’s favorite fruits, veggies, snacks, and soap were carefully chosen with his happiness in mind.

Six years in...

• I found a soap I like. It isn’t the same one we used before. I just couldn’t. However, I am please with my new choice.
• I can swing into Target or the grocery store now. I don’t love it, but hey! Staying away from stores saves me some money.

I got seriously brave recently and went to Costco. First time in years. I made it to the self-checkout with a basket of goods. Jimmy loved a good Costco run. That little thought brought on small tears. I felt grief sneak in and tried to hurry through the process of paying. As I was putting a cooked whole chicken on the checkout area, it slipped out of my hands. I tried to catch it but ended up ripping the lid off and sending a hot whole cooked chicken sailing through the air. As it was sliding down the aisle, I yelled, “Chicken down, chicken down!” I was hoping the “man down” reference would stop people from slipping on the chicken trail.

I left without a chicken, but I did manage to make a lot of random people laugh. The tears in my eyes were not just sadness but a bit of happy tears as well! Jimmy would love that I flung a chicken in Costco. He would just love it.