My husband, Justin, and I would describe 2019 as an extraordinarily challenging year…which is saying a lot considering the past decade of trials we have endured together from severe health issues to losing our first home in Hurricane Harvey. Our challenges started in 2010 when I was diagnosed with metastatic thyroid cancer just months before our wedding.
After nine years of both fighting cancer and successfully continuing my career in the oil industry, April 2017 marked my first ever grand mal seizure which was a direct result of my past intense treatment. I quickly returned to work; however, I was walked out of my employer’s office by the nurse practitioner because of the company’s rule that you must be 3 months seizure free to work. This triggered the need to take full advantage of my short-term disability (STD) because we needed more time to find the right mix of medications to stop the seizures. Once my STD was exhausted, I was able to participate in my employer’s long-term disability (LTD) program in October 2018 as my medications had yet to prove successful in getting my seizures under control and many other chronic illnesses had surfaced and needed treatment. This meant that I still got 60% of my salary, my medical/dental/vision benefits, as well as my life insurance. My desire to further my career, and my need to allow my body to rest and heal were in direct conflict with one another forcing me to reluctantly put my health needs over my career goals.
Despite a youthful and seemingly healthy outer appearance, I was unable to function typically four-five days a week, but sometimes even six to seven days a week! I think one of the hardest things about my cancer journey has been the silent suffering that comes along with “invisible illnesses.” Cancer is not always a disease that causes a bald head, extreme weight loss, or loss of all things attractive on your body like most people picture the cancer patient “poster-child” to look like. Cancer, and cancer treatment, wreak havoc on your body internally, yet can sometimes give a false appearance of health if you were to look at a picture of me or see me dressed in my Sunday best on days when I am able to make the effort.
As we fast forward through a few more years of tests, diagnosis, prescriptions, therapies, and survivor retreats, we reach a point in mine and Justin’s journey in February 2019 at which I had seen improvements, but I was still experiencing two to three days a week where normal daily function was at a low. Increasing my number of “functional” days was a huge success in my personal health goals as I had made significant efforts in strengthening myself through healthy habits of yoga, exercises learned in therapy, and a more tailored diet to my body’s needs. I was committed to success in my physical and speech therapies and truly took advantage of every minute with my therapists and bits of advice to follow at home. One of my diagnoses involves a serious need to strengthen my core muscles in an effort to maintain consciousness. Because I was having successes in both cognitive and physical function, my doctors believed I only needed another six to nine months before they would release me back to work if I continued progressing as I had been over the last few months. I’ve been working my butt off to get better, and I’ve had loads of people praying for me throughout this entire process.
At a particularly low point emotionally when I was so tired of hurting and ready to give up, I had this sign painted for me with lyrics from Jennifer Knapp’s song “Say Won’t You Say” as a reminder that God gives me each day to rise and give my all to Him. I needed this encouraging reminder to keep pushing through every single day, because it was so difficult to get out of bed each morning. I truly was at a point in which although progression and strength training through therapies and good responses to medication were working in my favor, I still had yet to return to anything even closely resembling what life was like pre-cancer. Although this is something I know I will never return to, there are those days where I need to mourn the life I thought I would have; on those days I rely on powers beyond strength I can find from myself, medication, and doctors. I rely solely on the strength from the power of my father, Jesus Christ, because I know that nothing else is going to get me through the day.
On February 20, 2019 I left the house for my normal Wednesday morning appointment to have my scar tissue worked on which proved to be all but routine as I returned home several hours later a panicked wreck as a man followed me all around town for several hours. I live in the Houston, Texas area, which is sadly a human trafficking hub, so of course that’s where my mind went first when being followed. I noticed a car driving aggressively behind me as soon as I left my neighborhood, which is about 45 minutes away from downtown Houston. The car remained behind me when I entered Houston’s major Interstate 10, and when I exited off of the interstate. I kept telling myself “there is no way anyone is actually following me,” “there’s no way the silver Prius that almost ran me off of the road in North Katy is the same one behind me in West Houston.” My gut kept saying to call the cops, but I kept thinking I would be embarrassed when I was told that it was nothing. After driving to another suburb of Houston in an attempt to lose this guy, I knew my gut instinct and fears were real, I was being followed.
Once I was able to push my “chemo-brain” explanation out of my head and convince myself I wasn’t just being dramatic, I went into a complete panic and wondered if I was about to be the next missing person on the news. I drove a little crazy in an effort to lose him, and I mentally patted myself on the back when I thought I had been successful. I decided to make the thirty-minute drive home since I no longer saw him. Unfortunately, when I arrived home, his car was parked facing my house by our neighborhood tennis courts! After absolutely LOSING MY MIND over the phone with a friend, and taking pictures of the car’s license plate, I met my husband, Justin, and the police at a local cafe for an incident report to be filed. The police could not do anything unless they actually saw him follow me, so they said to call when I saw him again, but he did live in my neighborhood. Terrified, I drove to my parents’ house to stay until Justin could come get me there when he got off of work. I had never been this shaken in my life. It was a long and expensive night as Justin did everything he could to protect our house in an effort to protect me, including purchasing me a gun, an enhanced security system, and shutters for our windows. I spent all of March and April 2019 scared of my own shadow. I basically became a prisoner of fear in my own home and wondered who had followed me for hours that day and when he would be at my house again. The terror that filled my imagination because of this event was truly damaging and I cannot even put it into words.
On May 2nd I had what I call my “MD Anderson Day of Fun” which is my routine six-month blood work and scans, and thankfully I got the wonderful news that my cancer was stable. This was obviously welcomed news as it is pretty much as good as it gets for us chronic metastatic patients! I had just spent the last two and a half months in fear because of the “stalker,” and because of this was having more frequent seizures and dramatically worsened fatigue and cognitive function. I was pleased to be able to hold onto this good news, and to focus on this huge blessing. I truly felt happy for the first time in months and felt like my stress level was easing up slightly. I also was hopeful that this meant that my chronic illness symptoms would feel some relief as well.
I didn’t get to sit in this sense of calm for very long. On May 3rd, the very next day, I found out that the “stalker” who had terrorized our lives and given me reason to arm myself and hide in my own home, was actually an incredibly poor excuse for a private investigator from my LTD insurance agency. I was soaking in an epsom salt bath after physical therapy when the insurance agency called to tell me that my disability was being revoked as a result of the findings of the private investigator, including his following me, my blog, and pictures on social media of me participating in cancer survivor retreats. I was in complete shock, and my heart immediately went into tachycardia, my heart rate jumped from 67 to 145 while on the phone, and it stayed elevated for days. This was a turning point in my life, as it marked an enormous regression in every chronic illness that I have. Prior to this point I felt so close to going back to work, so close to possibly being a foster mom, which is another journey in itself. I was actively talking to my doctors about plans for returning to work in future months before this day, but this day changed that conversation. I had to go back on dysautonomia medication because of more frequent fainting. I had to increase my epilepsy medication due to more active seizures. I had to increase my hemicrania continua medication because of more days in agonizing pain. I had to restart my anti-fungal medication because the candida I contracted in my 2015 surgery, which I had yet to fully conquer, began taking over my body again. I was holding on to this stress and allowing it to affect my health far too much. Stress has a physical impact on even the healthiest of bodies, much less an already immuno-compromised cancer-stricken body like mine.
One day in church in early June the youth pastor stood up and said he strongly felt that he was supposed to speak to someone in the room, but he didn’t know who. He proceeded to say “whatever burden you’re holding so tightly on to, give it to God. Let go so that you can breathe and heal. God is in control.” God was using him to shake me awake. I just sat down and began crying as the weight I had been carrying since February immediately melted from my shoulders. It is still a daily struggle of mine to continually pray that I rely on God and not stress about this life altering situation.
In August 2019, in an effort to ease stress on my very weak body, Justin and I hired a lawyer to appeal the insurance agency’s decision to revoke my LTD. It is so hard to be stuck in this very weird limbo where I never wanted to leave work in the first place, but my body just isn’t strong enough to be a consistent employee. I want to work. I absolutely do not want to be considered or to be called disabled, but that is exactly what I’m fighting to be called, at least temporarily. I was so close to getting back to work until the insurance agency decided they know better than all of my doctors. My internal medicine doctor and my neurologist will not release me back to work. My employer will not let me work unless I’m three months seizure free. But the insurance agency says I can work because I drove myself to appointments during a brief window when cleared to drive, attended young adult cancer survivor retreats, and I stood on a stinkin’ surfboard for 1 – 2 seconds for a picture?! Yes, remember how I told you that I was committed to strengthening my core through physical therapy as needed to treat my dysautonomia? Through yoga, which I practiced for years before getting sick, and therapy, I became able to stand on a surfboard for just seconds! Like all of us on social media, I took the best, not necessarily real-life, photo snapshot I had and made it my Facebook profile pic. It was just too incredible to get a picture on a surfboard with the sun behind me as if I was my own postcard! I had no idea this image, that brings me back to a place of peace when looking at it, would be used in such a nasty way to incorrectly judge my life. It felt like being punished for seizing the truly rare moments in life that were out of a doctor’s office and out of bed.
I would have to say that out of everything that has happened with the insurance agency judgements during the process, the absolute most infuriating thing is that they cancelled my disability based on me participating in young adult cancer survivor retreats. The LTD agency deemed our activities as “extreme sports” which is absolutely insane and inappropriate considering these trips are tailored to every single physical limitation of every cancer survivor. Young adult cancer survivors finally have an outlet to find community and our version of normal, we finally have an outlet to experience “normal” by doing “normal people activities” life surfing, mountain biking, and hiking, that great organizations like True North Treks and Send It Foundation make doable for our community to find emotional healing through outdoor activities not “extreme sports.” The fact that the very thing that was bringing me healing was being used against me to turn my life upside down is disheartening, and I want nothing more than to educate insurance agencies covering young adult cancer survivors. I also want to bring awareness to other young adult survivors on disability, so they know that anything they post online can and will be used against them.
In closing, here is what I’d like to say to every disability insurance agency making uneducated decisions on coverage for young adult patients:
Yes, I stood on a surfboard for a couple of seconds because an instructor did all of the hard work for me…the paddling, the carrying of the board, pushing out into a wave, and I stood up. I was proud of standing up on that board that day, even though the wave took me under quickly. I was proud of my hard work, and how far I’ve come to be able to stand, even for a moment. You know who else stands on their surfboards during these trips? People with terminal cancer and not much time to live. People in wheelchairs. People with breaks in the legs from their cancer. These trips give us the courage to get out of our comfort zone and feel liberated, and to overlook the pain even if for only a split second and thrive! At first I let you take that sense of accomplishment away from me. You told me if when you followed me that if I had been in a wheelchair with oxygen, you would still be paying my disability. You told me it would have been easier to overlook the fact that you saw a picture of me standing on a surfboard if I hadn’t been out of the house at all when you followed me for two weeks. You basically told me if I had wallowed in my chronic illness, that I’d still have my paycheck and medical insurance. For a few months I regretted pushing myself so hard to get better. I regretted attending those retreats that helped me feel human again, and I regretted being proud and wanting to share those accomplishments, but I will not let you win. I may have very little voice when it comes to my actual disability case, but I will not let you take my drive to improve from me. I will not let you take my celebration of accomplishments from me.
I will continue to fight to educate you on the life of young adult cancer survivors. We are unique. We have a lasting physical, mental, and emotional impact from cancer that is different from the older adult cancer survivors you’re used to seeing. We are rejuvenated by coming together to openly discuss things none of our friends outside of the cancer world understand because most people our age are healthy, moving up in their careers, and building families. Our spirits are fed by bonding over challenging ourselves alongside each other to do activities we didn’t think possible. The fact that we are able to push ourselves on these short trips to do incredible things does not mean our lasting disabilities do not exist. Often, it takes us weeks or even months to physically recover from these trips, but they are worth it. You cannot just turn your back and ignore the reality of what it is to be a young adult cancer survivor facing lifelong chronic illnesses.
I will continue to fight so that you stop and think before you take away another young adult cancer survivors’ paycheck and medical insurance simply because they are fighting with everything they have left to get their lives back.
All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers and loved ones dealing with cancer. If you have a story or experience you would like to share with the cancer community we would love to hear from you! Please submit your idea at https://elephantsandtea.org/contact/submissions/.