Twenty years ago today, I woke up in a hospital bed in Brooklyn and my life was changed forever. What happened was set in motion 9 months earlier in Belize.
I’d just turned 30, finishing my Master’s Thesis, and my sister was leaving for Hawaii, so we decided to have one more sister vacation before life got crazy. I don’t remember why we chose Belize or why we chose to go during hurricane season, but we had 2 wonderful weeks planned there.
Before we left, I did my usual research to find out what could possibly kill me. Chagas was my only worry (think human heartworms). I read about bot flies, biting gnats, and a few other stinging insects but didn’t think much of them.
We spent our first week inland hiking jungles and sleeping in huts. Since it was hurricane season, it seemed like we were the only tourist in the country. Cabanas with us as the only guests. Restaurants were empty except for us. The hikes were humid, beautiful, and full of bugs. We swung on vines to cross creeks, climbed to the top of a fire lookout, swam in rivers, and learned how to improvise a suture with a particular ant. You let it bite you and pinch the head off. OUCH!
We stayed at an eco-lodge with research students and spoke with the owner, Marta, who told us about bot flies and the only way to deal with them–shave the area, apply duct tape, wait 24 hours, and pop it out like a pimple. She told us to never let anyone cut it out or try any other silly treatment like covering it with bacon. Good to know, mental note made, on with the trip.
After our week inland, we headed to Caye Caulker, a small island, in a small boat. Halfway through the boat ride, it started pouring rain. Not that there was much to see, but when we could barely see the front of the boat, we started to worry. When the captain was obviously lost, we really started to worry.
The rain subsided enough for him to get his bearings and we finally arrived on the island. We grabbed our packs and started to look for a hotel. We walked past one and two American guys said hello. We kept walking but soon realized, that it may be the best place to stay.
Once we got settled in, we went to meet our new friends. As we sat on the balcony, I saw 2 guys that came in with us, leaving. I thought that was odd and soon found out why–we were expecting a direct hit from Hurricane Keith within 24 hours. That was the last boat back to the mainland.
We were stuck and hungry, so we went to dinner with a German guy we met. You see, down there, single women get harassed a lot. If you have a guy with you, they stay away. So we paid for the German guy’s dinner so he would come with us. Thankfully, he was really nice and great company.
After our first night, everyone was preparing for the hurricane. I called our mom to let her know what was happening–we were with 3 guys and soon going to the shelter and were safe. I still remember what she said, “I hope you both have daughters and they do this to you one day”. I told her we loved her and the phone went dead. Gulp.
(Back story–on a Costa Rica sister trip check-in I told her how we were almost held hostage in a town lockdown and when we didn’t show up at the airport, my mom was calling anyone she could think of and getting my dad to find people to call in favors to find out what happened to us. We just overslept, had to catch a later flight, and had no time to call.)
We stayed in the school turned shelter with everyone on the island and watched the storm hit us. We slept on desks, ate horrible food, and all shared one toilet that was backing up.
At one point some people were coming from a neighboring house and were almost swept away in waist-deep water.
I’ve been through a lot of hurricanes but never during the day to watch houses get pushed off foundations and water rising fast. I watched the water rise and timed how fast it was coming up. If it kept rising at its pace, it would be in the school in 6 hours.
When I say we were on an island, it was really more of a sandbar. There was a reef break about 300 yards out, but once the water goes over that, it’s not doing much to slow down the waves or surge.
I turned to my sister and said, “if we get washed away, grab a palm tree and hold on. No matter what, hold on. We’ll meet at the airport.” She nodded in agreement.
We didn’t get close to that scenario, thank God. After the hurricane went over us, back over us again, and back over us once more, it was over and we went to get our packs from the hotel and wait for a boat to take us to the mainland. I had brilliantly moved the beds together into the corner and stuck our packs filled with non-essentials all the way under and left all our liquor on the table. Packs were there, liquor was gone.
At the airport, we were told we could leave the next day so we got a hotel room with the 2 guys from Virginia. We went through this whole thing with them and weren’t about to let go of them just yet.
The next day at the airport we all sat and waited, hoping we would actually get on a flight back home. There were so many people there and it was so loud. All of a sudden, I heard what sounded like an air horn go off right next to my ear. I turned to look at everyone and no one flinched. When I asked who did that, they were all confused. I told them it wasn’t funny and still no one had a clue what I was talking about. When I told them someone set off an air horn in my ear, they all said no one did that. I started to cry.
Everything started crumbling in on me. The hurricane (ironically named Keith, like my thesis advisor), my sister leaving, my thesis I was supposed to be writing, the swollen lymph node, the spot on my head that would not stop itching…it was all too much.
We did get a flight that day and were so relieved to get home.
After we ate some decent food and had some rest, I showed my mom the lymph node and she said we needed to go to the ER. My mom used to work in the ER billing department, so she had a bit of an in.
I told the doctor, who I knew, where we had been, and did he think it was some kind of parasite. Should we call infectious disease or epidemiology? He said my system was probably stressed from being in the shelter.
But what about this bite on my head?
I had pulled all the hair out around it and he said it was just a bug bite. Nothing to worry about, but he’d call infectious disease to see what they said. After a short conversation, they would pass. No need for a consult.
When I got home, I asked my sister to take a look. When she gasped, I knew what it was–a bot fly.
I ended up being wrong. It wasn’t a botfly, it was 3 botflies! All with their little tails sticking out of my head pulsating.
How exactly does one get a botfly? Well, a botfly catches a mosquito and attaches eggs to its underside. The eggs turn to larvae and wait for the mosquito to land on a host to feed and the warmth signals the larvae to drop onto the new host. They wriggle their way into either the mosquito bite or a pore to finish pupating.
We did what Marta said and eventually, all 3 came out. The last one, after I was stopped for speeding coming back from dropping my sister and mom off in Austin. That Trooper had quite the dashcam video to show his buddies!
Anyway…during that ER visit, the doctor noticed my thyroid seemed enlarged. “Nope”, I said, “been that way as long as I can remember. Just the way I am.”
He informed me that, no, that’s not the way I was supposed to be and I needed to go to an endocrinologist as soon as I got back to Brooklyn.
Being a grad student, doctor bills weren’t really in the budget. And come on, I’ve had this all my life, it wasn’t anything major or someone else would have said something, right?
After I found a job and my insurance kicked in, I went to get a physical and mention it to the doctor. She felt my neck and said she was making an appointment right now with an endocrinologist. Still not convinced I was dealing with anything major, I went to the appointment reluctantly.
At the consult, I explained I had always had this lump and no other doctor seemed concerned about it. He wanted me to clarify “always”. Well, since I was 13 or 14 for sure. His face became stern and worried. “We need a biopsy. Now”, was all he said as he walked out of the room to get a nurse and a few med students to watch.
I laid there with my head as far back as it would go as he stuck needle after needle into the base of my neck.
About 9 months after my 30th birthday, I was sitting across from my doctor and he told me I had cancer. I broke down.
His comforting words of “this is the best cancer to get” did not help and he sent in his nurse.
I unloaded on her–I just got a job. I just started my career. I eat right. I exercise. I don’t drink, do drugs, or smoke. How, how did this happen? What about kids; can I still have them? Should I still have them? A million things poured out of me and she answered each one with kindness and understanding.
I was told I needed surgery NOW. That if what I said was true, having this in me for so long could have dire consequences. Unchecked, thyroid cancer moves to the lungs and bones first. I had a surgical consult within the week and surgery soon after.
Before I had the surgery, I had a second opinion. It was the same.
I know I called my family and told them, but I don’t remember doing it. I do remember freaking out in my apartment, my boyfriend at the time trying to calm me down. I was saying things like–I’m going to start smoking crack! I’ll drink Jack Daniels from the bottle! I will only ever eat twinkies and pizza from now on! I will never lift another weight or run another mile! F this! I am done being good!!!!
But I wasn’t. I was just angry. And when I realized there was no reason, no explanation, no cause for why it happened, I accepted it.
The surgery was easy. My mom came to stay with me to help if I needed it. There was no pain after, I was just tired. I stayed one night in the hospital and with my history of fainting, they let my boyfriend stay with me.
He walked my mom back to our apartment and came back. While he was gone there was a fireworks show happening by the Statue of Liberty. I had a perfect view from my room. It was July 18. I racked my brain for a holiday, event, or occasion for fireworks and came up with nothing. It only lasted about 5 minutes which also seemed odd.
My boyfriend returned and said nothing about the fireworks. He HAD to have seen them. I sat there wondering if I had imagined them. If I did, was I imagining everything else? Was I alive?
Everything seemed to slow down and I didn’t hear what he was saying until he asked, “Hey, did you see those fireworks?” I felt like life was breathed back into me. “I have no idea what they’re for though”. “Me either”, I said, quietly wondering if they were somehow just for me.
After the surgery, my mom went home and I tried to get back to a normal life. Life without a thyroid is hard. It regulates almost all bodily functions to some extent. Until I had my body scan and a dose of radiation, I wouldn’t be on replacement hormones. I was tired all the time and life was miserable.
My boyfriend had left to start law school in California, so I was alone with our cat Z. I would wake up early so I could get dressed, eat breakfast, and take a nap before I went to work. I would get to work early so I could take a nap before the day started. I would eat lunch as fast as I could so I could sleep for the rest of the hour. When I finished work, I would take a nap before I headed home. When I got home, I would shower, change into PJs, eat dinner, and go to bed.
I told a co-worker what was going on and how I needed to sleep and he would cover for me and wake me up when needed. This went on for a month.
When I went for my check-up, my doctor told me, “you look like hell!” Wow, thanks.
My body scan showed a few hot spots of thyroid tissue, so I would need an oral dose of radiation and another scan. The radiation treatment meant solitary confinement for 10 days. Usually, this was in the hospital, but since I was living alone, I could stay at home with certain precautions.
The first was by no means was I to leave the apartment. Visitors were ok as long as I stayed 10 feet away and they were not elderly, pregnant, children, or had a compromised immune system. Do not eat after anyone or use the same utensils, washed or not. And flush the toilet twice after use.
I was all ready to go, until September 11. I was at my dentist’s office, 10 stories up right across the river, watching it all unfold. I worked at the courthouse, so everything there was a madhouse. I found my boss and we waited in a bar until everyone was accounted for.
The terrorist attack meant things like radioactive isotopes were on lockdown. My treatment, and leaving Brooklyn, would have to wait.
In mid-October, one year after a mosquito dropped 3 bot fly larvae on my head, I sipped a teaspoon of tasteless liquid from a huge lead canister, and into isolation, I went.
My apartment had been packed up and most everything was sold to prepare for my departure. It was me, my cat, a futon mattress, 2 boxes, and 1 suitcase. The fridge was stocked with food so I wouldn’t have to leave.
And there I stayed for 10 days. Sleeping during the day and up at night. Talking to myself. Talking to the cat. Crying. Writing. Being angry. Being relieved. Trying to sort out all that had happened. I wasn’t moving to California with my boyfriend. I was going to Texas and then to Hawaii to be with my sister and recuperate.
I didn’t know what caused the cancer, but I did know it was the wake-up call I needed. I started to take my health seriously. My diet may not have been what caused it, but I was going to make sure it didn’t bring it back. I had always saved for a rainy day. Saving money to have what I needed, but never really enjoying it. Never splurging. That was going to change. I was going to live my life AND enjoy it.
Hawaii was the perfect place for that. My sister gave me lots of space to recoup. She never pushed me to get a job, stop moping, stop crying, or “get over it”. I went to the beach, worked out, hung out, and just took it easy.
A few months into my stay, I decided it was time to get a job. I applied to do what I knew how to do, advocate for victims. Even after saying “shit” in my interview, by the time I got back home, I had a message to call my soon-to-be boss. The group of women I worked with for 3 years helped me heal in so many ways and to become a better person and friend.
After the diagnosis, my parents started to get along better. After being divorced for 20 years, they could finally be in the same room for more than 5 minutes. They even started to use each other as a backup in disagreements we had. Do you know how nerve-wracking it is to one day know if one parent says no, the other will say yes, and then they are on the same side? UGH!
But I did have a long run of being right. My parents were so happy I was ok, I could do no wrong. I told my dad I wanted to get a sailboat to live on and he said it sounded like a good idea! WHAAAAT!?
I read a book that talked about why certain illness affects certain parts of the body. The neck becomes sick when one is stifling their voice, not speaking their truth. I believe that is why I got cancer when I did and where I did. I wasn’t being true to myself and I needed to start.
If I made myself sick, I would make myself well, and start living a life that made me happy.
I took fencing, hula, and pottery lessons. I did my first triathlon. Took a month-long vacation alone to Vanuatu in the South Pacific. I bought a moped. I biked to work. I kayaked crystal blue water. For the first time ever, I had real work friends. We had full moon dinners on the beach with friends and laughed until it hurt. I made two friends I now call my brothers.
Living in Hawaii was great, but not for the reason you think. Yes, it’s beautiful, but that time with my sister was a gift to my soul. Being with her, sharing a full-size futon on the floor of a 600 sq foot studio at the bottom of Diamond Head Crater crammed with 2 bikes and 2 kayaks and a kitchen that we both barely fit in was what healed me.
The laughing, the crying, the inside jokes, the fighting over the way the clothes were hung in the closet. Taking her spin class at the gym, shrimp truck on the North Shore, Thanksgivings on the beach. I couldn’t and wouldn’t have healed without her love, support, and friendship.
After almost 4 years in Hawaii, my sister moved to California, and it was time for me to go home. After leaving home at 17, being home was exactly what I needed to continue my healing.
I had 6 years in Texas with my parents, brother, niece, and nephew. My dad bought an RV and we took some amazing trips. I got to go fishing with him whenever I wanted. I could fly out to see my sis and her boys at the drop of a hat. I was there when my best friend had her baby and lost her father. I helped take care of my nephew while my brother fished. After Hurricane Ike hit, I was there to help my mother clean out and rebuild her house.
I was able to be there fully and completely with my family and enjoy my time with them.
After Hurricane Ike, I bought the property next to my mother and started planning a small farm when I met Fred in my last-ditch effort of online dating. I have no idea how I got so lucky to find him, but I’m glad I did. Coming to Missouri was hard, but it was just another part of my healing and growth.
Over the past 20 years of being cancer-free, I’ve slowly taken control of my health. Making changes and working towards what works best for my body. It’s never easy and always a work in progress. But that’s what life is, right? Change, adjustment, growth. Every choice moves you towards where you are meant to be. Sometimes you get there quickly, sometimes you take the long way. Sometimes your choices work out, sometimes they don’t.
Had I not been infected by a bot fly, I’m not sure where I would be today. I know I wouldn’t be healthy physically or emotionally and I don’t think I would be as happy with my life, or who I am, as I am right now.
All because I went to Belize where a mosquito bit me and 3 little larvae went into my pores. Setting off a chain of events that forever changed my life…for the better.
This has been a long time coming for me. Like 50 years long time coming.
What was the no sugar “rule”? No maple syrup, coconut sugar, cane sugar, beet sugar, honey, sucanat, palm sugar, etc. Basically, no added sugars. The only sweet treat was from whole foods. So when I got a sugar craving, it was a pear, grapes, banana, mango, etc. If I made a smoothie, I added a date.