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Oh, give me a home where the animals roam
And the monkeys and parrots all play
Where seldom is heard, the “evacuate” word
And the skies are not cloudy all day

                                         This is how the chicken crosses the lake.

                                                    Bicycling cowboys

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Rewiring and Reclaiming

One man’s distraction is another man’s refuge. ~Khang Kijarro Nguyen

    

Oh Ometepe! Do I miss you? Not really. I have always said I have a love/hate relationship with Nicaragua. I am in the hate phase…not because of the people, instead because of the Ortega regime. I abhor what they have done to the people. But, this post isn’t about Nicaragua. It is about how distractions and a crisis in Nicaragua helped to save our lives.

Ron felt a lump in his neck last February. Friends and professionals said it was nothing to worry about. It was palpable and soft. But, they cautioned us to get it checked anyway. We waited under a mango tree on Ometepe Island, avoiding the hot sun, to see the technician who had an ultrasound machine. He discovered two lumps, one the size of a grape, and the other the size of a pea which was deeper in the tissue of his neck.

Again, he said it was nothing to worry about, but recommended a biopsy. So, we ferried to the mainland the next day for a fine needle aspiration of the largest lump in his neck.

When the results were ready, we were unable to go to Rivas because the paramilitary had blocked the roads and they were shooting up the town. So, we asked Robinson to call the doctor and if it was cancer, just don’t call us back.

Minutes later Robinson called us and said Ron was good to go. The results were benign, however the doctor recommended surgery to remove the lump because it could turn into cancer in 10 years or less. It was diagnosed as a pleomorphic adenoma of the salivary gland.

Relieved that Ron’s tumor was benign, yet still stressed from the gunfire we heard late at night on the street behind our house, we debated on whether to stay or leave Nicaragua. If we left, we could go to the states and have the tumors removed. It was impossible to travel to Managua because the paramilitaries were shooting, kidnapping, imprisoning, and killing protesters. It took two more months to pack, give away our belongings, and find trustworthy renters who would adopt our pets and love our home. On July 19th, we left Nicaragua on one-way tickets and returned to our home in the states.

We forgot how beautiful our area was. The Nolichucky River beckoned Ron for a few abundant fishing days, and because our home in Tennessee was rented to our friends, we decided to make an appointment with the Ear, Nose, and Throat doctor to have his tumors removed, buy a car, drive to Canada for a couple of months, return to TN and have the tumors removed, and plan a six month trip to warm places for the winter. 

Little did we realize that “Winter was Coming” in more ways than one…and beyond our control.

Again, Ron’s tumors were biopsied and the results were both benign. The ENT surgeon removed the tumors and sent them to pathology. Meanwhile, we were staying in a small bedroom in our house while Ron recovered from his surgery and I planned our six month trip to warm places in tropical zones.

The week before we were to leave, the doctor called. “You need to have a PET scan as soon as possible.” OMG! Frantic with worry, we knew the news could not be good. The pathology report returned with a diagnosis of HPV+ squamish cell carcinoma. The glands that were removed were the secondary source of the cancer. The PET scan would determine if the cancer had spread to other parts of his body, locate the primary source, and tell the doctors the next course of action.

We entered Cancerlandia…. it was a mystifying, stressful, anxious, and fearful world. We would rather be whale watching in the Dominican Republic.

 We were living in crisis mode. The stress was overwhelming with the anguish of 3 more surgeries, radiation, and chemotherapy which was the recommended standard treatment for HPV positive throat cancer according to the American health-care system. The turmoil of the many choices we had to make, and the false hopes such as three benign biopsy results, were almost too much to bear. We fluctuated between periods of happiness and despair, gratefulness and the curse of hope, spiritualism and faithlessness in a religious world, and anger accompanied by bouts of grief. We had to rewire to survive. Yet, how? 

The radiation oncologist wouldn’t start radiation until Ron had all of his teeth pulled. The chemotherapy oncologist would’t start chemo until Ron had a port and a stomach tube embedded into his body. The ENT surgeon had to find the primary source of cancer at the base of his tongue before treatment could start. Everyone wanted a piece of him and we were led like zombies from one office to the next, wondering how much this would cost.

Our salvation actually came in a gallon of Tropical Nut paint. Since we were going to be spending the winter in our house, it disheartened us to see the paint chipped off the walls and ceilings and blankets covering the skylights and doorways to save heating costs. It resembled a dark, cold cave. I couldn’t imagine Ron trying to recuperate in such a depressing environment.

The day after he had all of his teeth pulled, we started scraping the walls of the hallway closest to our little bedroom and repainting. Little by little we were reclaiming our house and our space….and it felt so good!

Our friends moved into his mother’s basement until home sales increased, which would probably be spring. Throughout the daily radiation treatments and three chemo treatments scheduled two weeks apart, we dreamed of complimentary paint colors, watched YouTube videos on how to repair peeling ceilings, and woke up excited to take our daily walks in Lowes and buy more painting supplies.

The snow fell and we were blissfully unaware of the cold. Ron started toasty fires in the wood stove in the basement. Our distractions of painting, remodeling, decorating, and unpacking our belongings that we stored in our house for eight years were life-saving. Our lives didn’t revolve around cancer.

We tore down the blankets covering the sky lights and heavy dark curtains on the windows. Let there be light… symbolic of the tunnel we were traveling through…we could see light pouring in at the end of the treatments.

Cory took family leave from Yosemite National Park. He brought another fantastic distraction, a sour dough starter from 1890. He taught me how to make a delicious sour dough bread that we could share with the nurses and doctors who tended to Ron’s every cancer need.

By mid February, Ron’s treatments were over. The doctors and nurses declared him their star patient. He was in a clinical trial to reduce the painful side effects of the radiation. He received weekly infusions to prevent the throat sores and mucus build-up from the radiation. It was a roaring success. He was the only person in the trial in our area who had no side effects from the radiation…no mouth sores…no trouble swallowing…no throat pain!

Our remodeling was almost done, too! The downstairs was painted and redecorated. the boxes were lovingly unpacked and our treasures were placed around our home. Transformed from a house to our home, we were both proud of how well we handled the stress and demands of the cancer treatments. As the doctors have repeatedly stated, “This is not only the standard treatment for your cancer, but it is the cure.”


What is next? We are not sure where our paths will lead us. Ron has several months of recovery. Meanwhile, we have many miles to go before we rest. We would both like to explore Croatia, Slovenia, Slovakia, Greece, Prague, Montevideo, and Albania this fall.

However, I learned to buy travel insurance for those unexpected emergencies, like Ron’s cancer. Travelex was better than my expectations. I spent two months planning our winter trip, and a month canceling our reservations and verifying our refunds, but we received all of our money back down to the penny.

I want to thank everyone for your concern and comments since I have not been posting. Please know that I appreciate you! My focus has been on helping Ron through the maze in Cancerlandia.

Our lives have changed drastically since last April. But, throughout all the stress and changes, we have both remained optimistic and are looking forward to new paths in our rewired lives…with a little help from our distractions, passions, and friends. 🙂

Next up:

Comparing cost of living in Nicaragua and USA
Will we return to Nicaragua?
The cost of Cancer in the USA

 

 

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