FA LA LA… IT’S A LA LA LOT.

I don’t want Mrs. Claus to feel dissed, but I do a great job at making my little house look like a holiday wonderland. Well, as much as it can in Southern California when it averages a cool 75 degrees on Christmas.

I know most families have that one tradition keeper. The one that makes sure traditions are set and then followed and expanded as time goes on. Sometimes, we can make ourselves and those around us go a little bonkers as we see to every detail of the holiday season. What is a great quality can also become a bit of a hurdle.

When Jimmy was first living with his diagnosis, I really leaned into making the holidays spectacular. I look back and remember thinking, “What if this is our last Christmas all together?” I wanted to create the best moments for my kids and my extended family. I wanted Jimmy to feel extra loved and special… Just in case we didn’t get another holiday season together. It is hard not to have those thoughts. It does make us live more intentionally and let go of things that don’t matter. It also motivates us to push through exhaustion and spend extra time and money to see to it that the things that we hold value to are done well. If I am honest, I was a bit overwhelming!  Picture even poor Rudolph turning off his nose and hiding behind the barn from me. I wanted it done up around here! We can cook, clean, decorate, shop, and wrap gifts long into the night for our families. Guess what? There is nothing more valuable than feeling safe, happy and full of magical thoughts and being with those you love on a holiday!

When we are planning and managing the holiday season and living with or caring for someone with neuroendocrine cancer everything becomes a little more meaningful, but ALSO more difficult to do. HO HO HOly moly it can be a lot! I learned that after many years of kicking into gear and hosting the Christmas Eve Dinner at our house for the whole family, that the celebration had to be modified. I could not pull all of that off without Jimmy’s help. Due to his health, he needed to scale back his Santa workshop of decorating. He usually went all out decorating the front of the house. We had a 20-foot Christmas tree with a heart as the topper (for me). He made a snowman out of rebar and lined the walk with candy canes. The roof looked like a message for anyone living in space. (I can hear the astronauts now, “Houston, WE HAVE a problem…we need sunglasses!”) As our kids grew, we would enlist them to help. That was…well… It was eye-opening. AfterI dragged us all to the park or the beach for a photo for the perfect holiday card, it was home to help dad on the roof or help remember where the hole in the front lawn for the giant metal pole for the Christmas tree was (I never heard laughing during this exercise). We maybe looked a little weird out there crawling around and poking on the grass, lol. But! The 20 plus high rebar tree with hundreds of lights on it meant happiness to us, and if I am honest, to me. It was tradition. You know what else it was? A pain in the tuchus!

When my kids started helping, the first few years felt fun. They got to go on the roof for the first time. They got to mess around with electricity. All the usual no-no’s! Eventually the novelty wore off and it became a chore. Seeing how much time and effort went in behind the scenes, they started telling us what they didn’t mind not having for the holidays, but more importantly, they showed us what the magic of the holidays was for them.    

It was no longer safe for Jimmy to jump on ladders or carry heavy things. The kids knew that he loved that stuff. Not being able to do it was a bummer for him. The fun was doing it with their dad. The year that we scaled back and didn’t put up the big white tent in the yard for our big family dinner or the giant tree in the front yard, we were all a bit sad, but it also unleashed a kind of relief. We didn’t hustle and bustle. We had time to spend together. We learned that a dinner of any kind with our family was what held the value of the tradition. The cracker toys that held silly hats and a joke were a must. The sparkling cider and the hot cider with cinnamon sticks? Don’t skimp on that. The music, the laughter and complete break from thinking about Jimmy’s health were magic. These were the real holiday miracles that we not only wanted, but needed. We didn’t need the BIG. We needed the small details of love, of family, of peace. I felt that maybe I was letting everyone down by not holding up the entire holiday on my shoulders. I soon found out that I was a silly Christmas goose. Nobody minded the less than normal holiday extravaganza.   

Being a caregiver is a true gift to the family. Knowing our loved ones are cared for and maybe rocking a holiday sweater for an extra touch of cheer is all we need. The family loves you, not the meals that take three days to prepare. To see you having time to enjoy their company and hopefully give you a break to sit and chat is their joy. If you are the one with NET cancer, it may be just what the doctor ordered for you to receive that little box of your favorite chocolate or a handwritten card from your friend. Sometimes, it is okay to let those around you show up. You can just be. 

I am looking forward to a sweet and quiet holiday season this year. I am setting up the front room of the house as a little holiday dream. Instead of putting up 42 lit candy canes down the driveway, I will be snuggled in with my dog, Chewi, reading a book about some holiday fiasco! Instead of being the house that everyone drives by to see,  Chewi and I will be driving around town looking at lights while listening to the tunes of the season. Not to worry, I will go all out with a few traditions and make sure we have comfort, joy and a whole lot of hot apple cider on the stove. I will not be buying so many gifts but what I do give will be wrapped with lots of jolly. 

If you are spending time with your family and are figuring out how to get it all done this year, your health and that of those you love can be the first thing on your list, the rest will come naturally when you follow your traditions in a small but meaningful way. Life changes and as it does, we must adapt and find our joy. Remember to be present and to  be ready to say I love you every chance you get! The holidays give us an opportunity to do just that. I hope that even if this holiday season requires a trip to the hospital for treatment, or extra days inside, you find a way to hold onto the most important thing. That is each other. 

This time of year can feel polarizing to your “limits” due to neuroendocrine cancer. Please remember to grab ahold of the kindness and good wishes all around you. Starting from me! I wish you all a wonderful holiday season of celebrations and joy. 

Reading, napping, walking, and collecting sea glass at the beach are my kind of hobbies these days. Back in the day, I loved to ski, ride a mountain bike and goof off with my friends. I love to be adventurous, and outdoors is where I am happiest to this day. I have also often imagined a life in a little cottage with a fireplace, soup on the stove and a dog at my feet. My husband Jimmy? If napping was an Olympic sport, he would have won gold for the catnap event. Give him ten minutes and he was fully charged.

The rest of the time, he always chose a hobby that carried some danger to it. Jimmy grew up riding dirt bikes. He raced them for a lot of his late teens and twenties. He won his race at Mammoth Mountain Motocross one year. Quite an accomplishment. When we met and got married, we both kind of morphed our hobbies. We chased our kids around for many years and that felt like our whole world. With small kids, he didn’t feel dirtbike riding was that feasible or safe. I didn’t ski as much nor live in a snowy town anymore.

When Jim was diagnosed with neuroendocrine cancer and had his first major surgery, he came home one day and said, “I stopped by the cycle shop today and ordered dirt bikes. One for me and two for the boys.” Life left my body while I ingested the words that he had spoken. I will not repeat the next few minutes of conversation. It was rather salty. I hadn’t seen Jim that intent on something in a long time. He was going to ride that motorcycle no matter what.

After we bought out all of the available safety gear for them, they went to the Mojave Desert with a group of lifelong friends and started riding. Our oldest, Gradon, took to it instantly. Our youngest, Kyle, had zero interest. He would go with them to the desert and play with toy rockets and wait for Jimmy to start the bonfire at night. They would sit around and enjoy the desert sky. Jim had this little cannon. Yes, cannon. It didn’t send any projectiles out but in the morning ,when all of his buddies were snuggled into their RVs sleeping, he would put a little gun powder in it and set it off. The BOOM would wake up everyone and scare them half to death. He loved that thing.

Eventually, I decided to go and bring my camera. I wanted to capture what was happening and be supportive. After surgeries and treatments, it was good to see him laughing and talking (and talking some more) with his buddies. He would ride off with a group of friends along the trails and return so happy.

I was always worried. He was already trying to navigate cancer, what if he were to get hurt? What if something awful happened? We had already been through so much. I was being extra careful to keep us free from extra trouble and he was throwing caution to the wind and going for it.

Jim’s doctors weren’t having it. They were all very honest about how they felt. The risks were not worth it. I was on their side. I agreed. But the thing was, I had this tug in my heart that made me feel bad when I vocalized my feelings about his riding. The thinner or less strong Jim appeared, the more he needed his rides in the desert. The more worried I became. Then a beautiful thing happened. Jim stopped by a dirtbike shop and asked them to sponsor him in an upcoming race at a local track. My amazing hubby got it! They wrote a letter of sponsorship! They gave him a discount on anything he bought. He got their gear to ride in this upcoming race. I was less than happy to hear that he would be racing! I had visions of men just ‘dog eat dogging it’ around a track. I saw this as a potential major hazard for our life. If Jimmy got hurt, I would have to take care of him. What if something worse happened? I was just beside myself with worry and a little flash of anger. Why was he willing to possibly put us in a predicament of catastrophe? Yes, that’s right catastrophe. (I went there.)

That is what a caregiver thinks every time something else comes into the picture while they are holding up the universe. I am a future tripper extraordinaire. I worry about all the what if’s. The thought of anything else being a threat to my family made me use invisible bubble wrap and caution tape. I had slowed or stopped all the darn fun in life for my family. Cancer was the only risky thing I could handle.

The day of Jim’s big race he packed the truck and took the boys out to the track about an hour and a half from the house. I eventually grabbed my first aid kit, phone numbers of local rescue teams and emergency information…just kidding, but secretly I did want to bring in a whole ambulance team. I arrived at the scene to find Jimmy sitting in the back of a truck watching the races before his own. He was serious in thought and very quiet. A quiet Jim Faulkner was an unusual sight. He finally changed into his gear and walked his bike to the starting line. I perched far away from him where I imagined I could get a photo of him whizzing by. I was so nervous and possibly armed with a few “I told you so’s” just in case he fell and got hurt. The race started and Jim Faulkner, racing number 42, and all the other racers left the starting gate. Racer after racer flew past me. I had my camera ready for Jimmy. It seemed to be quite a while before I saw him in his sponsored jersey and cool helmet round the corner. He rode by me and he was not going fast at all. He was slowly riding the track. I felt his determination. I felt his focus. I felt his joy. I realized Jimmy wasn’t interested in being the next Evil Knievel. He was completely locked in the moment. There was nothing else on his mind but what was in front of him. He didn’t notice or care if other riders were passing him by. He wasn’t looking for a trophy. He was feeling peace. He was in the state of mind that you only get when you are totally focused on one thing.

He finished that race. Period. I don’t know his time or where he placed. I know this:** He rode that race**. He came off the track, and his buddies and our boys greeted him. They hugged him and shared high fives like this was the best day ever. And guess what? In some ways it was. His friends were so supportive and happy. His boys thought he was incredible. (He was). Most of all, he did it. He set his mind to it and enjoyed it. He enjoyed the whole thing.

I left Jimmy and the boys at the track to pack up and drive home with a new set of emotions to sort out. I understood what was in front of me all along. Jimmy felt alive in that moment. He felt like cancer could not reach him while he was on that bike. The wind, the ground and the blue skies above him were all he was feeling. He felt free. He felt one with the universe in his own way.

Later that night, we had a really great conversation and he explained just that. The desert, his bike, his family, and friends were what he really needed to live. He left behind the endless pain and the constant thought of cancer in the back of his mind. He brought forward the reason we live. Joy. Mindfulness of the present moment. Peace.

The next time a doctor criticized his hobby, I would shut them down. I supported his desert trips. I would help him make his trip easier by prepping his food that he had to make for everyone at camp. I ordered his medical supplies and sent him on his way in the RV with the boys and the dirtbikes. I never worried again about what could happen. What if this is the way of life? Do what you love when you can and take care of business when you must. There is no way I would want to look back and think I kept Jim from enjoying his life. He was living with a lot. He may as well live with total abandon and clear mindedness when it was possible.

I still worried. I also accepted the possibility that he could get hurt. This risky choice on his part reminded me that he lived with cancer every second of every day and nothing can be as hard as having to accept that. I still chose calmer hobbies to offset the chaos, but I now think about doing the things I love. I am hoping to stop seeing the risk in adventures and return to fun Karalyn again someday. I am hoping to really jazz it up and buy new hiking boots this winter. I want to take a long drive with my dog and see some parts of the country that I haven’t been to. I hope those of you living with NET cancer continue to find your peace and joy. I wish caregivers the time and energy for the fun they need as well.

A year after he passed, all of his friends and our family met in the desert and guess what we did? We put some of Jim’s ashes in that cannon and woke up the whole desert with a boom that included a little piece of his magic. If you had the pleasure of knowing Jimmy, you know that he was amazing. This month will mark 8 years since he passed away. Remembering him as an unstoppable force in this world brings me comfort and sadness all in one. I feel his energy in my work at The Healing NET Foundation. His personality shines through our amazing sons. As Thanksgiving approaches, I want to remind all of you that I am grateful for you. Thank you for reading Karalyn Cares. I really do care about all of you.

Just in case he can read this, Happy Trails Jim Faulkner. Happy Trails.

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.

'Foot Fall' of 2017

Make it stand out

Two broken feet…and Buddy!

For caregivers, it is hard to quiet the mind. We really are thinking for at least two people, at all times. If you are a parent, you may be thinking about your loved one with cancer, your children and your task list to keep life humming…sometimes you will remember to think about your own needs.

During the final few months of Jimmy’s life, I was feeling exhausted and worried and trying to be two steps in front of what could happen next. I wasn’t exactly as present as I should have been. Those around me encouraged me to take some time for myself: Go for a walk! Get some rest! Great and well meaning advice. I went for a walk and the home health nurse called to let me know she didn’t like what she was seeing with Jim’s health.  So, I sat down on a little wall in front of a house I was passing and decided I needed to cram a bunch of living into a small amount of time. I was going to get my hair done, a manicure and pedicure, and try to sneak out for lunch with a friend.  Maybe everyone was right! I needed to take some time to rejuvenate and be ready for what comes next.

I felt pressure to check all the boxes. Mom stuff? Check! Jim’s medicines ordered? Check! Home health scheduled? Check! Next, clean the house, pay the bills, walk the dogs…and buy dog food for a month out, just in case. My quest to feel more organized and ready for what may come next actually was hurting me. 

With a head full of orders to get a lot taken care of, I started off by going for a pedicure. My family was happy that I was doing something for myself!

I threw on some flip flops, drove to the salon and parked my car. I hopped out of the car and took a call from my niece and walked up three steps to the salon door. Just then, I realized that my car was still on! So, I turned around and lost my footing. I did a ‘60s Moondog surf move down the steps and landed in the asphalt parking lot. My niece was still on the phone and the contents of my purse were strewn all over the place. My knees, hands and elbows were covered in asphalt and little rocks. My feet? Yeah, they were not so lucky.  I knew instantly that I had broken them.  

There I was, putting on a show for  everyone in all the stores that face the parking. I will never be considered for an Olympic sport unless they come up with Cartoon style free falling. 

I couldn’t even stand on my own two feet! I called my sister and… she didn’t answer. As I crawled to sit on the step that I used as the finale of my grand fall, I actually saw her drive by! Then, of course, I started laughing. I sat on that step laughing, bleeding and watching my feet change color and swell like the imaginary wave I rode down the stairs.

I next called my son and he found me in a mess of a situation. We drove to the ER, and they took mercy on me and only casted one leg and gave me a boot for the other. When I returned home, my husband gave me his adjustable hospital bed and he moved to his recliner, together we took up most of the living room. What a pair we made!

There I was. I had to sit or lay down for weeks. Standing up hurt, but sitting still was hurting my heart and nervous system even worse. I felt so guilty for being out of commission. Jimmy needed me to help him and now I was asking him to drag his IV pole to the kitchen to grab me water.  I noticed the whole house sort of kicked into a panic mode. How were they going to manage all of the things that I did? 

We quickly learned the answer: they weren’t. The shift in the house was a necessary one. It was a good time for Jimmy to see what it was taking for me to not consider my own needs and take care of him. He did start doing a little more for himself. That, in turn, gave him more feelings of independence. My son who was living with us had to make some changes as well. He had to run to the store for us and help his dad a little more. The days were quiet, instead of me rushing in every morning to open the curtains and start the day with gusto! Instead, we lounged around. We watched a lot of Law and Order. We napped. I got to just BE with Jimmy. All my concerns about the near future and the far future changed. It really was time to slow down. Sit still. Just be. We did less and enjoyed the moments we were in more.

It was healing to have to stay put and to let the situation unfold organically. Honestly, we are only in control of a few things anyway. We can practice good healthy habits, like our SEES (Sleep, Eat, Exercise, and Spirit). The incessant worry about Jim’s every health issue was not changing much except the stress was making me out of focus and overwhelmed. The Foot Fall of 2017 ended up being a gift. I felt like the burden of doing was replaced with the gift of feeling my feelings and coming to terms with a lot of emotions. It gave me time to be grateful to sit next to my husband and hold hands while we napped or watched another episode of Detectives Stabler and Benson solve a NYC crime with the same actors from a near distant episode playing different characters. I remember the house being so full of peace. My son, Kyle recently showed me a photo he took of Jimmy and I sleeping during that time. Me on the couch and Jim in the chair. You see Law and Order on the TV. It is truly one of my favorite photos of us. Just being a married couple who naps. Just being. 

Soon after that, Jim went into hospice at Cedars-Sinai Medical Center, I returned to walking around the hospital with a boot and a cast. I returned to taking the best care of Jimmy that was possible. 

What didn’t return was the notion that I was responsible for holding up the world. I was given time to realize the way to be present for your loved one is to rest and keep your mind free from too much worry. It literally means stay near them. Love them. Please don’t break your feet to learn this  kind of lesson! Love yourself enough to let this time in your life be one step at a time. Take time to be together.  It is worth it. Every second.  

Please take care and let me know if there is a topic you would like me to write about! 

Jud Kimmel Shares his NET Journey

Please welcome our guest writer Jud Kimmel for this month's Karalyn Cares. Jud is a NET patient, an advocate and someone I find to be proactive for his his own health and compassionate and helpful to others. Learn about Jud's NET journey and Karalyn will be back next month!

Thank you to the Healing NET Foundation for inviting me to share a little about my NET journey and my passion for patient engagement.

After a year or so of worsening diarrhea, skin flushing, and shortness of breath, and several frustrating medical dead ends, I was diagnosed with Stage IV, Grade 3 Small Bowel NET in September 2022.  Tests confirmed many metastases in my mesentery and liver, as well as mild carcinoid heart disease thanks to the hormones secreted from my functional tumors.

I was a patient advocate, for myself, from the start of my NET journey – devouring the educational resources offered by the Healing NET and other neuroendocrine cancer (NEN) organizations.  I was fortunate to have a general oncologist who referred me right away to a NEN specialist, which led to my enrolling in the NETTER-2 clinical trial and receiving PRRT (along with both short-acting and long-acting Octreotide) as my first line of treatment.    

PRRT shrank and stunted my NETs and reduced my carcinoid syndrome symptoms by killing my largest liver NET and it opened the door to the tumor resection and ablation that I underwent last fall.  I’m currently NED and although I know my Stage IV disease will return at some point, I love being able to focus my “cancer energies” in other directions.

NEN patients and caregivers are supported by excellent advocacy groups but I myself struggle to keep track of everything happening.  My own need for a clearinghouse of sorts led me to start the Neuroendocrine Cancer Event Hub on Facebook – which is simply a master calendar of upcoming educational events.  I monitor roughly 20 advocacy websites and post upcoming conferences, webinars, and Q&A sessions to the calendar.  I’m now developing a website called NENfolk.org: the master calendar plus a guide to the many videos, podcasts, and other forms of content out there.  My goal with NENfolk isn’t to reinvent any wheels but rather to assist people in finding the learning resources that work best for them.

Another passion for me is in building connection and agency among men with all types of cancer.  Men are much more likely than women to isolate themselves, suffer shame and depression, and be passive in their own medical care following a cancer diagnosis. . Studies indicate that men have lower survival rates and outcomes compared to women with the same cancer types and stages. I myself was severely depressed early in my NET journey and I am incredibly thankful to have found a men’s peer group called Man Up to Cancer: manuptocancer.org.  MUTC is changing what it means to be a man navigating cancer, and I find that the brotherhood borne of shared experience and understanding is key to my own wellbeing.             

And finally, in receiving Dotatate PET scans and PRRT, I became fascinated by the rapidly evolving field of nuclear theranostics.  I’m excited by the creation of new radiopharmaceutical therapies (RPT) to treat more forms of cancer – that is, beyond NET, prostate, and thyroid – and I share my story in the hope of helping to advance RPTs for everyone needing better treatment options.

Going forward, I look forward to building NEN patient knowledge and engagement in their care decisions, and encouraging men especially to lean in.  Countless social media posts from the wives, daughters, and mothers of men with NENs suggest that many men defer to their female loved ones, as well as health care practitioners.  I want to be part of changing that paradigm, with more men educating themselves, connecting with other patients, and making confident decisions in consultation with others.

The other day, a well-known and respected NEN patient advocate gently chided me for introducing myself with “I’m a Stage IV, Grade 3 GEP-NET.”  Her point was that we are much more than the disease with which we are living.  I’m a husband, father, feeder of a dog and two cats, homeowner, brother, son, friend, Minnesotan, public finance advisor (my day job), music lover, and indoor rowing enthusiast – just to name a few.  It took me a long time to figure out how to add “NET patient, probably for the rest of my life” to the list without having it overwhelm everything else.

Getting involved in the NEN, men’s cancer, and radiopharma communities has helped me get there.  Being part of things that are bigger than myself has lent me new perspectives on my “incurable but treatable” NET situation and given some much-needed purpose to having this often frustrating and scary disease. 

I know that not everyone has the time, health, energy, resources, or motivation to engage in patient advocacy, but I hope this story maybe inspires you to connect with another person who is going through it, just like you are.  That alone is about as powerful as it gets.

Cupcakes and a Speeding Car

Not that I see myself on a TED Talk stage anytime soon, but I have a list of things I feel like sharing with the universe at large. Fear and cancer happen to top the list of talks I would give. (Along with why mayonnaise is the worst possible food.)

Nobody wants to live in fear. It is such an awful feeling in our bodies. It keeps us from sleeping and preoccupies us when we are trying to work and makes us worry about everything else around us.

Fear is part of the cancer equation. It is also one of the true natural instincts that we are born with. We come hardwired with a fight or flight mechanism. We are supposed to run away from danger. We sense it, taste it, and can be paralyzed by it. Hearing “don’t worry,” doesn’t do much except make us feel bad for worrying. We may not be running from cavemen gone wild anymore, but we are dealing with fear that our bodies are creating. A bonafide internal chase of emotions.

With a cancer diagnosis, we hear the words, we experience the symptoms, we see the plan for surgery or treatment. We see the look of concern on our loved ones’ faces. We also feel our bodies differently. We now know with certainty that we are not in the driver’s seat. Oncologists and nurses are amazing at their jobs, and I have so much respect for them. A healthy start to a conversation with them could be, “I am scared.” Their response could start with, “You have cancer, and that is scary. Together, we will sort this out. Let’s all take a minute and look over what is going on, let’s make a small plan for the near future and give you some help on how to manage the stress and worry.”

Fear comes out in many ways while we are living with cancer. I felt that I had to keep it all together for everyone and continue to move forward with Jim’s diagnosis. Adding the caregiver hat was something I did with pride. But everyone has a limit to what they can stand. When my husband, Jimmy, needed to go to Switzerland for treatment, I was in a quiet panic inside. It wasn’t in our budget, it meant Jimmy had cancer that was acting up, it meant putting an ocean between us and our children for ten days. I had arranged care and meals for the kids. I had drained our bank account to get us there. I had fought with the insurance company to get the treatment covered. I had thought of everything, but what I didn’t do was deal with the uncertainty and fear I was struggling with in my body. I was trying so hard to hold the down fort and not worry Jimmy or the boys, that I stretched myself too thin emotionally and physically.

The night before we left, a friend gave us a plate with giant chocolate cupcakes on for the kids. The neighbors were all outside to wish us well. We were all standing on the lawn when a young guy in a decked-out hotrod fishtailed out of control right in front of our house, which lies on a curve of a street. He came close to losing control and could have hurt my family and friends. My nervous system decided enough was enough! Without any thinking involved, I picked up one of the cupcakes from the plate I was holding and flung it like I was the starting pitcher for the LA Dodgers. That cupcake, though dense, had some energy in it. It went directly into the open passenger window and hit the closed driver window, from inside the car. It broke into a thousand pieces before our eyes. As the driver realized what happened, he stopped his car in the street while the neighbors and my family just stood still. The driver looked at me and decided I was maybe not in the mood for a confrontation, and he drove very slowly down the street. Then, I started laughing. I couldn’t stop. Tears rolled down my face. My family? Yeah, they were not impressed.

I was at capacity for handling my worries. I was scared. I was overwhelmed and I didn’t deal with it properly. Throwing a cupcake at a speeding car felt so great in the moment but really, I could have taken care of myself a little more to prevent the “cupcake toss of 2008.”

Guess what? It wasn’t just the speeding driver. I was so full of fear and concern from every angle in our lives. I was trying to take everything on, so my husband didn’t have to worry about anything but his health. Now, I had done it and added to his worry. He was also worried about his health but acted fine for us. Our kids were being so brave, yet they also had concerns. I felt that I was holding up the entire family when in fact they were following my example and holding it all in. It was too much for all of us. I had been so laser focused trying to handle it all, I didn’t give any of us a chance to be open about how we were really feeling.

We went into the house and after I stopped laughing and crying, sat down in the living room and had an honest conversation. I apologized for “cupcaking” the speeder. (I am secretly not that sorry.) Next, we took turns talking about being scared or worried about the unknown. I admitted that I was trying to do too much so no one else had to worry. I came clean and said I was a little afraid of dad having to leave for treatment far away from what is familiar. I worried about leaving our boys. I also said how fortunate we were to have this plan in place to help their dad. Jimmy told us he was worried about being gone from work so long, but also felt hopeful the treatment would go great, and he was ready to go! He told the boys he knew they would be fine and to enjoy the things we had planned for them while we were gone. I asked the boys to write a list of questions, and we would get them answers. We also promised Swiss Army knives and Swiss chocolate.

We came up with healthy alternatives that throwing an expensive cupcake could never really solve. The truth is, we cannot know much with great certainty about cancer. We must be positive, hopeful and strong. We can also be ready to practice techniques to handle the bigger emotions. We can also be honest at times and say, “I am afraid.” Three simple words that can lead to a closer relationship with your loved one. The same words can lead your medical team to offer you some help. By sharing it with others and finding solutions, you can bring comfort to someone else. That is pretty amazing.

P.S. I still giggle about that darn cupcake.