Kayla Funk on Surviving and Thriving Beyond Cancer

OHH-Kayla-Funk-Cancer-Survivor.png

Kayla Funk is a portrait photographer in southern Arizona. At 18 years old, she was diagnosed with cancer and a local photographer took photos of her family during time, which she now so lovingly does for others. This is Kayla’s heart-wrenching and beautifully hopeful story of how she got to where she is today. Cancer free and thriving.

OUR INTERVIEW

What was your childhood like? I was raised in a Christian home that taught love, grace, mercy, acceptance, and faith as important above all else. I saw my parents love each other fiercely, and my brother, sister, and I experienced a radical kind of love from my parents that I’ve been hard-pressed to find in the rest of the world. I never questioned if I was loved, valued, or important. I never worried about anything. Honestly, I sometimes jokingly say (although it’s pretty true) that the hardest thing I’d experienced in my life before cancer was my boyfriend breaking up with me in 9th grade. I was given every opportunity I could dream of … piano lessons beginning when I was 5 years old, ballet classes even earlier than that, and a trial-and-error mission to find the perfect fit for my education including public school, homeschool, and private school. We traveled as a family. We met people far richer and far poorer than us. We experienced more than most children do, saw more of the world and were exposed to more cultures, and I had an up-close look at many of life’s hardships in other people’s lives, but I never experienced them myself.

“I transformed from a confident and independent young woman into a completely helpless mess, totally dependent on those around me. There were points where I was okay, but many times, my life looked like that of a toddler’s.”

Can you tell us about your experience with cancer? When I was 18 years old, on a 3-month-long mission trip with 9 other girls in Nairobi, Kenya, I began having strange symptoms like nosebleeds, bruising, fatigue, headaches, and back pain. Most of these things made sense; nosebleeds could be caused by a change of altitude, bruising could be from any number of the activities we were doing everyday, fatigue could be caused by jet lag, headaches could be caused by the braids I had in my hair, and the back pain made sense because I was carrying around a giant backpack everyday and sleeping on the ground. But as we were packing and preparing to leave Nairobi and head into more rural parts of the country, I knew the responsible thing to do would be to see a physician while I had access to healthcare. One week later … after countless tests, long days at the hospital, and middle-of-the-night phone calls with family members stateside, my doctor in Nairobi told me, “I don’t know what you have, but you need to go home to figure it out.” I was resistant at first. After all, we were only one month into our journey, supporters back home had funded my trip entirely, and I felt like going home would be “failing.” But I was (very sensibly) convinced by my boyfriend, my mom, and several of the sweet girls on my team that I needed to take care of my body and figure out what was making me sick.

When I got back home to Birmingham, Alabama, I was met with weeks worth of pokes, prods, tests, and procedures to determine what was wrong with me. The diagnosis came back as neuroblastoma, a type of pediatric cancer that is typically diagnosed in children under 5-years-old. The name of the disease meant nothing to me, and I chose not to do any research on it. I only believed that I would fight, and I would win. I underwent 15 months of chemo, traditional targeted radiation, full-body radiation, a bone marrow transplant, and immunotherapy. I transformed from a confident and independent young woman into a completely helpless mess, totally dependent on those around me. There were points where I was okay — I could sometimes manage to eat a full meal on my off-weeks from chemo, I enjoyed experimenting with hats, head scarves, and makeup while I was bald, and every now and then I found the energy to take a walk or practice yoga. But many times, my life looked like that of a toddler’s. My mom had to bathe me. My dad had to carry me up and down the stairs. My boyfriend would drive me to a restaurant, only for me to stare at the food, unable to take a bite.

At the end of my treatment, or what I thought would be the end, I went into the hospital for my final set of scans before I was finally going to be able to move on with my life. Unfortunately, those results didn’t say “all clear” like we had hoped. Instead, I found out that my disease had relapsed, and I had entered into the category of neuroblastoma patients who are statistically incurable. My doctor let me know that our goals were shifting from “cure” to “management of disease.” We were going to begin focusing on keeping my cancer at bay while I pursued the things in life that were important to me, which I quickly decided was going to college.

I started my freshman year at Auburn University just days later. Shortly after that, I began my first clinical trial treatment. I won’t go into many details of the trial because ultimately, it was the first in a series of many experimental treatments that simply did not work. With most of them, I had treatment for five days in a row every third week at a hospital two hours away from my school. During my treatment weeks, I would go to class in the morning, someone would drive me to the hospital at lunch time, I would get treatment for 4-5 hours, and then they would drive me back to school, and I’d start over the next day. There were brutal side effects, I ended up hospitalized after losing 11 pounds in one week, a tumor that had manifested in one of my vertebrae caused a fracture leading to the need for a back brace, and then at the end of my freshman year, the cancer spread to my brain.

The first tumor was surgically removed, and then the spot was radiated. Six months later, three more appeared, but they were slower-growing and less aggressive, so we did not remove them surgically, only with radiation. Two months after that, another very quick-growing, aggressive, large tumor appeared, which we surgically removed. During the two week period where I was waiting for my radiation plan for that tumor to be finalized, it regrew to its original size. At this point, my doctor let us know that we could expect me to live another six to eight weeks. We did not attempt another surgery because the risks outweighed the benefits, but we did move forward with the radiation plan in an effort to relieve my symptoms and make me more comfortable. During this time, there’s a 10-day period that I don’t remember at all. My brain simply wasn’t functioning well enough to make memories. I am actually grateful for this for a couple of reasons. One, I was unable to walk, stand, sit, eat, or do much of anything on my own at this point. There was a lot of suffering that I was able to skip entirely. Two, even though I was in the room, I was never aware of the conversation about “six to eight weeks.” I never knew what was “supposed” to happen to me.

It was right at the end of that 10-day period that I visited a naturopathic doctor. My dad set up the appointment, my boyfriend came along for the 3-hour car ride, and the two of them toted me into his office and sat next to me as we listened to all the ways my life was going to look different from then-on. I don’t remember much about this day, but what I do remember is this: on our way home, my dad called my mom and had her on bluetooth in the car. She asked how it went, and my dad told her the plan and that we had another appointment in 90 days. My mom started crying because I was not supposed to be around 90 days later. It seemed like we were too late.

OHH-Kayla-Funk-Cancer-Survivor-2.png

What holistic modalities came forward to support you during this time? The plan that my naturopathic doctor laid out for me had two major components: one, eliminating anything that could be weakening my immune system or feeding the cancer cells, and two, overloading my body with nutrients that would strengthen my immune system and allow my body to defend itself from disease.

In practice, what this looked like was about 100 ounces of fresh-squeezed vegetable and fruit juice everyday, a diet consisting of 90% raw vegetables, fruits, nuts, and seeds, about 60 capsules of herbs, supplements, and vitamins everyday, about a gallon of alkaline water, the switch to a more natural lifestyle including skincare, hygiene, cleaning products, etc., and expediting my body’s detoxification process with coffee enemas (never thought I’d talk about that publicly, but here I am!).

At this point, my days all looked exactly the same: I woke up in the morning, called out to my mom, and she came to lift me out of bed. She supported me as I shuffled to the bathroom to get “ready” (detox, bath, get dressed), helped me down the stairs, adjusted me comfortably on the couch where I would stay all day, and then began the continuous rotation of juice, capsules, smoothies, and meals. My boyfriend came over when he got off work in the afternoons, and my dad got home in the evenings and juiced for about an hour. They ate dinner in the living room with me sometimes and helped me into the kitchen when I was feeling up for it. Although I’d done nothing but sit all day, I was exhausted come 8 pm, so Austin went home, and my parents transferred me back to bed and tucked me in, just like they did when I was little. Day-to-day, nothing really changed, but over time, something crazy began to happen.

I had twice-weekly doctor’s appointments, and each time I went, I was a little bit stronger. At one appointment, I stayed in my wheelchair the entire time. At the next one, I pushed the wheelchair myself for the final 20-yard walk. Soon after that, I was able to trade my wheelchair for a walker. Eventually I was leaving the walker at home too. My balance was coming back, I was able to communicate more clearly without slurring all my words together, my gross and fine motor skills were recovering, and my doctors and nurses were very pleasantly surprised, shocked even, every time they saw me.

It was just two months after that “six to eight week” prognosis that Austin proposed to me at the beach, and just a month and a half after the proposal that we got married in Turks and Caicos with 40 of our closest family members and friends. In between the proposal and the wedding, an MRI detected three tiny spots that looked like tumors in my brain again. Considering how quickly and aggressively my tumors were growing before, I knew that my natural approach had significantly slowed their growth, but I was still nervous about letting them go untreated. I chose to have two of the spots radiated, and my next scan after our wedding showed that all three had disappeared. I continued my protocol strictly for about a year before I began to wean a little bit, though I’ve stayed true to the spirit of the diet and lifestyle. I focus on a plant-based diet of as many raw vegetables and fruits as possible, I still drink fresh juice, just in much smaller amounts, I turn to natural remedies before seeking medical help, and I practice listening to my body and giving it what it needs.

“It was just two months after that “six to eight week” prognosis that Austin proposed to me at the beach, and just a month and a half after the proposal that we got married in Turks and Caicos.”

What led you to see a naturopathic doctor? My dad has a friend who is also a patient of my naturopathic doctor. When things started rapidly declining with my health, that friend sat down with my dad and said, “we are not talking about anything else until we’ve set up an appointment for Kayla with Dr. Rawdon.” My dad quickly agreed. We had heard of plenty of natural remedies throughout my fight with cancer, but I mostly felt like it was silly to forego highly-researched medical treatment and go the natural route when there was no research to prove their effectiveness. I can still say that I’m thankful for western medicine, as it certainly played an important role in my healing, but ultimately, we had nothing to lose by trying a natural form of treatment because western medicine had nothing else to offer me. I had run out of options. In the end, I think there is room and a role for both.

Are there any challenges that you have experienced so far in your healing journey? A commitment to this process is both very hard work and very expensive. My life revolved around this daily routine for a long time, and making plans like dinner with friends, a weekend trip to the beach, or even just being out-and-about all day was nearly impossible. Not only is the cost of enough organic produce for 700 ounces of juice per week (plus the rest of our grocery bill) enormous, but actually dedicating the time to juicing, preparing meals, and packing and planning for the times when I won’t be eating / drinking at home is very time-consuming. I am so thankful that I had my parents doing it entirely when I was sick, and my husband doing most of it when we got married. There is no universe where I would have been able to do any of that for myself at first, and even when I was regaining my health and my strength, it is a giant undertaking for a person to take on alone.

“I can honestly say I feel healthier now that I did before cancer because I’m so aware of my body, its needs, and what I can do to nourish and protect it.”

How can the people in your life best support you during and beyond healing? One of the most amazing things that our community did to support me during this time was bring our family fresh organic produce for juicing. A family friend set up an account for us on Take Them A Meal, but instead of listing casseroles, pasta, meats, etc., she listed the produce that we needed for juicing each week. Friends, family, and strangers showed up to our house on Sunday afternoons with 25-pound bags of carrots, crates of apples, cucumbers, beets, and celery, and all of the fresh fruits and vegetables we needed to make it through the week.

People in crisis often don’t know what they need. Asking them, “can I do anything to help” may overwhelm them. We didn’t know to ask for people to bring us produce, but it was truly a lifesaver. Others volunteered to pick up our laundry on Fridays and bring it back washed, dried, and folded on Saturdays. Some people stopped by the house to take care of the dogs when we had long days at the hospital. We really did not realize we needed those things, but we are thankful those people saw a need and met it instead of asking us to define our needs.

The flip-side of that is also tough, though. People in crisis may not be able to realize or articulate when something you offer to do is not helpful. If someone offered to bring spaghetti and meatballs for dinner, we really didn’t have a good response for them. There were a thousand other things they could do that would have been more helpful, but we wanted to be grateful, so we just said, “okay.” Those meals went mostly uneaten, unless we had visitors who wanted to take them.

The key is to be present. If you sit with, listen to, cry with, and laugh with someone who is on a healing journey of their own, you’ll become aware of their needs without asking. You’ll see their struggles that they might not even see. You’ll feel their burdens, you’ll be able to identify ways you can help lift them, and you’ll be strategic about not contributing to them.

How are you feeling these days? Just over three years post-cancer, I am feeling great. I am stronger and healthier than I ever thought I’d be. I’ve run several half-marathons, participated in CrossFit competitions, and I’m able to enjoy my life to the fullest! My husband and I moved to Tucson, Arizona, in January of 2017, where we live now with our two pups. We love being outside and exploring our city. I can honestly say I feel healthier now that I did before cancer because I’m so aware of my body, its needs, and what I can do to nourish and protect it.

KAYLA’S RESOURCES


Related Posts