Look for the Magic

While living with neuroendocrine cancer, you can look pretty darn good on the outside while living with insides that are…not so good looking!

Humans! Yep, we are human, and we are visual people. Sometimes, we need some physical proof to understand someone’s pain or issues. A broken leg with a big cast will bring you understanding quicker than a liver with tumors looking like a constellation of our brightest stars on a scan. I don’t know about you, but I never wanted to carry around snapshots of my husband, Jimmy’s abdomen and pelvis as proof. (Even though it was pretty cool to see those images.) On one hand, we are grateful that our friends and loved ones haven’t had to deal with a rare cancer diagnosis. On the other hand, it would be easier for us if we felt more understood.

Jimmy was often told,

“But you look so great!”

“I see you are going to work and still hanging out with family.”

“Why do you need to travel to see a specialist when you seem to be doing well?”

When Jimmy looked pretty good, we did get a lot of those questions. It was always frustrating to me. I wanted to shout from the rooftops (honestly, I got stuck on the roof of our house once and haven’t been back up again) about how it is true Jimmy looks okay, but he is in pain and his kidney, pancreas and liver are in a bit of trouble. He was working and doing his best. We wanted to preserve that time as much as anyone. To hold onto the days where Jimmy could work, go camping, play basketball with the boys or plant his vegetable garden. Our love of going to the beach to walk around was one way we could feel peace.

We were holding on to those days. We had been in doctor appointments listening to scan summaries and treatment options. Jimmy did indeed have invisible pain and discomfort--that cannot be shared or felt. He had quiet worry in his mind. The best gift I gave myself was practicing the understanding of others intentions. People love you. People love your person with cancer. They want to see them looking good because it must mean they are okay. They do NOT really want to see scars and trauma, because they do not want that for you. They want whatever it is that you are dealing with to be fixed easily, like with an antibiotic or special bandage that they can see that will eventually come off with a little soap and water. Knowing how much someone they care about is suffering can be too much to dial into.

We don’t always understand the things we cannot see. It is also scary to know that they could be walking around, working and laughing with their family at Sunday night dinner AND be carrying around an invisible illness. That is a human feeling, and it can make us uneasy. The reality is most of us walk around with our outside appearance not matching our inside happenings. Emotional or physical symptoms are not always written on our faces. We have also learned to hide what is going on to make others feel comfortable. We don’t want to make others feel what we are feeling. We also don’t think others will understand.

As a caregiver, I started to see our options changing and tried to hold my worries together. That is when people started giving interesting advice. That didn’t go well. I was turning over every option in every state to try to find the answers Jimmy could benefit from. Sleepless nights were spent pouring over medical journals, writing emails to doctors and learning how to find the best help for my guy. I felt such a responsibility to not just Jimmy and our boys, but to all who loved him. One person said to me “Don’t let anything happen to him.” It wasn’t meant to be as mean spirited as it sounds. It was how they said, “I am scared something can happen to my dear friend.” I felt it at every corner. I knew everyone was looking at me to find the answer. I felt so much pressure to continue doing whatever I could.

Then, the help started coming in…. Articles on rare treatments found in places in the middle of nowhere and special bottles of elixirs that Jimmy’s friends would bring home from their travels. These made me feel upset, like I wasn’t doing enough to help him. Jimmy finally stopped bringing them home from work. He quietly accepted these trinkets and kept them on his desk. After he passed away, I went to pack up his office, and he had bottles with random labels promising liver health or other magical properties. He had magic coins, prayer cards, and talismans of all sorts. Instead of upsetting me, tears flooded my eyes. They DID help him. It wasn’t what was in those bottles, but the love and thought that went into their purchase. They loved Jimmy. They weren’t trying to tell me I wasn’t doing enough, they were trying to be helpful. This allowed them to show their love.

Those items gave Jimmy a feeling of protection. He could look at the little funny looking man statue and know his friend from the front desk was not only watching over who was let into his building, but was also sending his love to Jimmy though this little token. He felt so loved and cared for. In turn, that gave him more inspiration to keep moving forward through that invisible pain and worry. Jimmy was the one living with neuroendocrine cancer. He deserved to have every conversation and token of kindness and love. It didn’t mean we were going to use these items over the advice of our medical team. We wanted to be heard and understood and we were. We were not always getting the answers we wanted, but we were getting things equally as important. Friendship. Family. Community.

I now know that not every person will understand what you are going through. I also know that no one wants to see their people hurting. When they literally cannot see it, it is easier for them to offer advice that often isn’t applicable. This comes from love. Kindness comes out in ways we don’t always understand. Looking back, this was the part I sometimes got wrong.

While cleaning out Jimmy’s desk, I also came across a whole file of articles on cancer and “internet cures.” Jimmy knew better than to bring them home to me and I still am grateful for that. I always felt more emotions than I could hold in my body when given something like that. Caregivers are strong, though the lack of other options wears on our strength. Caregivers are also always inspired by the person we are caring for and all they must handle. We are also worried and often feel burdened by an unrealistic set of responsibilities to our person. We can feel like what we do is never enough. We want our person to be okay more than anything else. Before sharing an article, ask if it is something the caregiver is interested in. Tell the caregiver that you thought of them and that is why you want to share it. Let them know that you know they are doing everything you can as a caregiver. That is what helps the most. Knowing you see us. Knowing you see that we are important and what we are doing for our loved one is noticed. Not everyone can understand this path. It is a tricky one. It is neuroendocrine cancer. It is a very individual cancer for all of those living with it. That means that everyone with it is going to look, feel different AND need different treatments. What we need is universal. We ALL need understanding and kindness.

Grab a little box, add your acquired trinkets and make a file for the articles. They do hold magic. They were given with love and hope for a good tomorrow. Don’t forget to make space in your heart for the real magic of what is behind those gifts. This is where a lot of hope lies.

This is written in gratitude to all the people we met over the years, going through similar journeys and how we all help one another see the true meaning of community.

Please reach out to me if you would like me to write about something that touches your situation. Please reach out if I can be a source of understanding.