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.

Nourishing the Body and Soul

Neuroendocrine cancer has many ways it can knock us out of our comfort zone, and so we may spend a lot of time trying to hold onto our usual way of living. In some ways it is an extra job. The constant change in our diagnosis can remind us of how little we have control over. Learning to lean in and make changes was easier for our family and more enjoyable!

One really important area that can be tricky is nutrition and eating. For those living with neuroendocrine cancer, one person’s diet may not work well for another person. There are some issues that, as a community, we will likely deal with, like diarrhea or malabsorption. There are also many variables that make everyone’s needs different.

My husband Jim’s point of pride was our vegetable garden! Every year, he would have our boys help him tend to the soil, plant the seeds, and water the garden. He would watch for the carrots, tomatoes, zucchini, corn, etc. to pop up out of the ground like magic. He grew enough vegetables to feed a small country. Our neighbors would see him coming with his buckets of vegetables and welcome the bounty with open arms. (Some probably cried on the inside wondering what to do with 10 pounds of tomatoes!)

We have always been a family of traditions. Family dinner at 6:00pm every single night and on Sundays we had brunch together under the pepper tree in the backyard. We loved to go to restaurants; we celebrated around a meal. Someone graduated kindergarten or got a new job: Let’s have tacos!

After Jimmy’s initial diagnosis of neuroendocrine cancer, we were all in on making every nutrient count! We got a juicer and began juicing veggies and fruits for him. We upped our salads and added more vegetables to our diet. If it came from the ground or a tree, we were going to make sure Jimmy had it!

Little did we know that nuts and raw vegetables were creating issues for Jimmy. He went in for a colonoscopy and the doctor said he had to stop the test due to a large tumor blocking Jim’s colon. He told Jimmy to stop eating raw vegetables, nuts, and meats because they are hard for the body to process. I felt terrible because all I wanted was for his diet to boost his health, not hurt him!

After Jimmy healed from his initial surgery, we met with a Registered Dietitian who helped us tremendously. We were fortunate enough to be receiving treatment in New Orleans and we scheduled a meeting with Leigh Anne Burns, RD. Leigh Anne taught us how to make food healthy and easier for Jimmy’s body to process. When Jimmy’s diet had to change, so did our family’s diet. We all adapted to the changes.

Over the course of many years, Jimmy’s health and diet took many twists and turns. After many trips to the ER for a nasogastric (NG) tube to help with blockages, we learned even more dietary changes were needed. We did what we needed to. Jim loved lasagna and salads and BBQ, but eventually they were completely off the table. Eventually Jimmy needed to be on Total Parenteral Nutrition (IV nutrition and hydration). This is not typical for every neuroendocrine patient and when it does happen, for many people it can be temporary while their body heals after surgery. For Jimmy, this was his new, permanent way of life. A backpack held the liquid nutrients that kept him going. There were also a lot of other things to go with it: saline syringes and alcohol pads, tubes, and a PICC line. We also had to follow a schedule for when to start the bag, when to sleep and even how to work around it.

This was another setback to our dinnertime, which was once our best time of the day. It was so hard to enjoy meals when Jimmy couldn’t enjoy food anymore. The traditions as a family that we celebrated with favorite foods and gatherings came to a sudden stop. This was only temporary until Jim realized this wasn’t good for anyone and found a way to enjoy food in a different mindset. He understood more than ever how important food and nutrients were. He decided to start cooking for us! Suddenly, he was making us his favorite foods or whatever he was craving. With no warning, we would have enough sauteed zucchini and squash to last us a year. We would come home to homemade salsa with the tomatoes he grew with so much love. We would go camping and he would be hooked up to an IV Pole for his hydration bag while cooking more food than we could possibly eat. We would find him barbecuing a tri-tip steak big enough to feed the neighborhood!

My adult children and I just discussed this over the weekend. It was hilarious to remember how much food Jimmy would make. We knew that the neighbors were also waiting for that familiar knock on their doors to find Jimmy with these concoctions for them. We laugh about it now. He would not take no for an answer! Oprah gave cars away and Jimmy gave baskets of vegetables and food! “You get zucchini and bread, and you get zucchini and bread!”

Recently, I asked our two sons, Gradon and Kyle, how all the dietary changes in our home affected them. Over the course of 14 years, they saw our food routines change quite a lot. They know what they like and what they don’t. They understand that it is important to pay attention to what you are eating and make the meals count. They both are big “foodies,” who enjoy a good restaurant. One is an amazing chef in his spare time, and one knows every good restaurant in Los Angeles and enjoys trying new things. They say it has a lot to do with their dad.

I was so afraid the worry and the changes in meals were going to have a negative impact on our family, but Jimmy didn’t let that happen. He still found joy around food. It was in the grocery store shopping and the big meals he made for his friends on their annual camping trip to the desert. It was calling his TPN “Steak and Eggs.” The fact of the matter is, as Jimmy said every single day, “If your feet touch the ground today, it is a good day to have a good day.”

Whether you are the caregiver or the person living with neuroendocrine cancer, paying attention to nutritional needs and asking for guidance will increase quality of life. Good food, good company and feeling your best is good medicine. Here is to your health and your journey being the best it can be.

Blue Sky Day

Doctor appointments, scans, injections, labs, work, family, daily grind, and worrying over your illness or your loved one’s illness can take our nervous systems into outer space. We cannot really rest or sleep well--though we are exhausted--because our minds stay sharp and diligent 24 hours a day while neuroendocrine cancer lives in our homes. For a very long time this was normal for me. I didn’t stop worrying, driving, and running around while taking care of my husband Jimmy, our sons, our dogs, and our home. I did my best to keep track of everyone’s everything.

On a particularly beautiful day in downtown Los Angeles, Jim had two separate medical appointments. We drove an hour and a half to get to the first appointment. Traffic was terrible, but the sky… the sky was what I call Toy Story blue. A few white clouds would drift by, like peace calling, just out of reach.

We knew Jim’s health was not improving, and there were a lot of unspoken words in the car that day. As we finagled our way into the smallest parking spot ever, we barely felt like getting out of the car. Being the responsible people that we were, we didn’t want to keep our doctor waiting. After going in and hearing stressful evaluations of where things were going, we left even more hunched over than how we walked in.

I drove down La Cienega Blvd. to the second appointment nearby. As my GPS told me to turn left onto Beverly Blvd., my brain decided in that very moment that we would indeed NOT be turning left. We passed the parking lot and kept going straight. Jimmy didn’t say a word about my abandoned turn as I kept going in this new direction. Without warning, I quickly turned the car into a tiny shopping center. There was a Winchell’s donut shop! I parked, and Jimmy looked at me and smiled. A real smile. I hadn’t seen that one in a long time.

I grabbed Jimmy’s hand, and we went into Winchell’s for two donuts and coffee. We sat at this little table and looked outside at the gorgeous day and made plans. We thought about going to the Dodger’s opening game! We discussed a trip to Mammoth Lakes with the kids. We made plans that sounded great. I called the doctor’s office and explained we just didn’t have it in us to make the appointment that day. They understood. After 14 years, they seemed to agree, we needed a break. To this day, I can taste that strawberry donut. I can tell you how happy I was to be in a random donut shop with my husband, letting concern, worry, and big decisions wait for another day.

This day is one of my most favorite days with Jimmy. I treasure it more than I can explain.

We didn’t make it to Dodger Stadium or on another trip to Mammoth, but the hope was there, and our joy in pausing, even if it was just for one afternoon in sunny California, felt so great for our souls. We felt empowered and reminded that we can and should make some space to find our peace.

If you, too, feel overwhelmed or feel that you are expected to hold so much together that it is stealing your joy, it is okay and almost necessary to play hooky. It is okay to find a blue-sky day and find your dreams again. Finding yourself holding hands in Winchell’s Donuts at 1:00 pm on a Wednesday is pretty darn great.

If you need a break from something, please talk to your medical team. Sometimes, they may agree with you. You can heal and rest and come back ready to face treatments, decisions, and concerns with less of the feeling of being weighed down by the urgency of healthcare decisions. We make hard decisions about living with cancer daily. We also must remember to put some effort into our joy.

I know this NET community pretty well. We are smart and wise, and we know our bodies. If you feel it is time to reset your clock, to rest your mind and body, please consider it. One day of light and peace can strengthen you and put you in a better frame of mind for tomorrow. Whether you are the one with neuroendocrine cancer or a caregiver, you are important. Look for blue sky and puffy white clouds for inspiration. I hope you find time for daydreaming and filling your cup with hope.

The Christmas Shack Miracle

Twinkling lights, fireplaces aglow, gifts wrapped... I tell you, there is nothing like this time of year. For those of us who are part of the NET community, we know all too well how difficult it is to just focus on the beauty of the season and enjoy the holiday spirit. Traditions become increasingly important when you have cancer in your home during the holidays because it heightens the anxiety around time. We do not want to miss a single moment to make lasting memories.

One particular Christmas, Jim was getting ready for major surgery. We knew he was going to be out of work for a few months after surgery, and we thought a quiet, low-key approach would be best. We sat down and decided to prioritize our time and our resources to make the holiday season as lovely as possible for our kids and family.

Every Christmas Eve, for years and years, we had been hosting our entire family for dinner and fun. It is the one day I said thank you to my family for all the ways they enrich our lives throughout the year. I wrapped gifts like I literally might win an award. I made dozens of enchiladas, lots of rice, beans, salads, and desserts for 20 people every year. It was always a lot of work to get ready, and we needed all hands-on deck.

The day before Christmas Eve, Jim went out back to work in the yard and set up the tent for the party. My little house doesn’t fit us all, so we have a pretty, white tent, and I decorated it to perfection. Then the inevitable trip to Home Depot was announced, and I grumbled a bit. I knew Jim would be strolling the aisles for hours while I was cooking, cleaning and setting up tables and chairs. I knew he was feeling down about his upcoming surgery and a little anxious. What could go wrong with a trip to his second favorite store? (Harbor Freight always won hands down). I kissed him goodbye, as I imagine Mrs. Claus does the day before the big day when Santa takes off on his sleigh while she stays home preparing their feast.
I failed to consider that before every surgery or big procedure, Jimmy always started a project. We have multiple sheds in our yard. Yes, multiple. I should have realized that sending him to Home Depot at this time was a big mistake.

Jim was gone for hours. I mean hours. I was trying not to get that Grinch feeling, wondering why my husband wasn’t helping me for our party. I imagined he was leisurely strolling through the aisles, with a pencil behind his ear and his trusty tape measure on his pants. That is not what was happening. When Jim pulled up in front of Home Depot, they were starting to tear down the Christmas tree shack. This large structure was built quickly each year to protect the trees and the shoppers from the elements, the California sun in our case. Jim jumped on his first instinct, “Get that wood.” He walked over to the head elf in charge of the project and promptly made a cash deal, where for $200, he could finish taking down the wood shack and could have it, nails and all.

Who would want tons of wood, boards, planks, etc., the day before Christmas Eve when you are having 20 people over for dinner? Jim Faulkner would.

His called all his friends with trucks to meet him at the Home Depot Christmas tree lot. To their wives’ dismay, they also thought it was a holiday miracle! They dropped their own holiday preparations to tear down a Christmas tree shack with Jim Faulkner just before dark on the 23rd of December. I am surprised I didn’t feel the energy in the air change.

Sleigh bells may have been ringing around the globe, but one ring was not heard, which was a phone call to me! Nope, Jimmy decided to let this massive amount of wood be an extra surprise for me. Just as I was about to get worried about him, he comes flying in the front door, flustered and happy. He excitedly says something about a great deal he got at Home Depot as he moved through right on out the back door. I heard loud noises and headed to the window to look out front. What to my wondering eyes should appear? Not reindeer or a man in a red suit saying, “Merry Christmas to all!” It was a line of trucks with tons of plywood and planks. They all had little red cloths hanging off the back of their tailgates, not unlike Rudolph’s nose, keeping people safe.

As the holiday lights flickered on to welcome the night sky, Jimmy started shouting energized orders. They had to unload the wood in a hurry because they had to go back for more! As I stood in the doorway with a look of sheer wonder, Jim, with his face lit up with joy, jumps back in his truck and his loyal team followed suit. On Dave, on Paul, on Rich and Chad, off to Home Depot for more fun to be had!

I, meanwhile, was not feeling so jolly. I was rather frosty. Jim saw that shack and heard Mariah Carey singing, “all I want for Christmas is you!” I saw that wood and thought, “Someone is going to get run over by a reindeer or by me.” There were multiple trips to get this wood. Our yard looked terrible that Christmas Eve. But Jim was beaming, and dinner went off without a hitch.

For the few weeks until surgery, Jim made plans for a new shed. He drew sketches and consulted with friends. He measured and then measured again. He started the framing before surgery and talked about it while he was in recovery. Once home from the hospital, he would walk out to the wood pile and sort what he could. He dreamed of a cool place where I could have a place to go to unwind. One side was going to be his workshop, one side was going to be my happy place.

It took two years, plenty of help, donated old windows, a sink, old elevator doors for counter tops from a job site of his. But this little shed that made me absolutely crazy at Christmas became a gorgeous little place. He didn’t get to finish all the touches. He wanted there to be a water fountain for me to sit near and have tea. But it does have a sweet little white picket fence. It has his vibration in every piece of wood and hardware. It is built to withstand the test of time.

Believe it or not, I am now grateful for that shack! It was a bridge to hope for Jim. It became something he could see potential in. This year, I am going to turn the little cottage into my home office. Sometimes, beautiful things come from the unexpected. Jimmy was great at helping everyone feel important and cared for. At The Healing NET Foundation, we feel the same way about the NET community, and we will continue to build bridges to hope.

From my home to yours, I wish you all a wonderful holiday with those you love. Karalyn

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.