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

 

 

30 thoughts on “Rewiring and Reclaiming

  1. I mentioned to someone this week that – even though I love my life in tropical america – i am at times wistful for a normal house! Looking at the images of this post confirms it, but I certainly don’t miss the snow and cold weather!

    The river is gorgeous; it surely provides its own source of comfort – and connection to the earth.

    You both have definitely illustrated positive ways to deal with life’s challenges – select some creative tasks and get to work! The green plant connects you back to the tropical landscape, and perhaps carries its own set of positive vibes for those days when that upper-torso ‘shield/mask’ was at work.

    It’s great seeing your home/imagine your gps location – and getting updates

    • Lisa, when we knew we were here for the winter, the first thing I did was to buy a hanging plant for our bedroom. The next thing was to tear down the dark blankets and curtains from the windows. I named the plant Solomina because she was from the Solomon Islands. I talked to her every morning and sprayed her with water. Silly, I know, but she made me happy. I missed the tropics and green, living things so much.
      We made it through the long, col winter. Spring is around the corner. Now, I can’t wait to start planting my flower and veggie garden. Thanks for your comforting thoughts, Lisa. Hugs to you. ❤️

      • I think of you often, so know there’s always a special injection of ‘atypical’ energy coming your way from the equator! I’ve loaded your ‘wheelbarrow’ post to read when at home. The rainy season continues to be ‘strong.’

  2. Oh Debbie, I’ve missed your blog posts and have thought of you often in the last few months. Thanks for sharing your story with all the decisions, changes and challenges facing both you and Ron. I can well understand your wish to be whale watching in the DR! You’ve done a beautiful job turning your house back into a home and a place you can recharge and de-stress. Your photos of the sourdough bread had my mouth watering and I know you have to be enjoying the company of your son. 2019 will be a year with some uncertainties for all of us but I wish you happiness and health as you move forward deciding which path to take next. And remember, if you come to Europe, you have an open invitation and place to stay here in Portugal. Anita

    • Anita, thank you so much for your loving thoughts. You always seem to know the right things to say to bring comfort. I could say exactly the same to you, too. I have missed your blog and hope you will continue writing! The world needs more people like you…kind, understanding, compassionate, and strong. Hugs mi amiga. ❤️

  3. Ahh, I finally figured out how to post a comment! Just went through the “reader” tab while logged into WordPress. Anyway, we’re so glad you both have weathered this incredibly stressful and unpredictable year. We see nothing but good health and lots of travel in your future (and maybe Medellín in December – yay!). Hugs from John and Susan.

  4. Hi Debbie and Ron. We were shocked to hear this news. Just the other day our conversation drifted to Ometepe and the lovely visit we had with you, albeit a short and sweet one. So glad to hear there is a positive light shining at the end of this dark tunnel. We had brush with this in 2016 and it’s all worked out. Now, we’re just getting on with enjoying every day regardless.

    We stay in touch with our Nicaraguan friends and we keep our hopes high things will work out there too. Such a horrible story it has been…

    Take care and all the best for your new rewired life! Hugs, Chris & Heather

    • Awww…so wonderful to hear from you. Thanks so much for your encouragement. I continue to follow your travels. I am still not certain what will happen in Nicaragua, but I do know that my friends and adopted family suffer economically and spiritually for the loss of their freedom. So tragic! Hugs to you both and when Ron recovers, our paths will cross again…of that I am certain.

  5. Oh, my, you two HAVE been on a ride, haven’t you? I wondered where you were. What a nightmare, yet one filled with many blessings as well. My husband had thyroid cancer, discovered only because he felt something wasn’t right and went to the doctor. His entire thyroid was removed but thankfully, he’s currently still cancer-free. I pray that for Ron as well.

    And yes, travel insurance, whether cancer or not, at least for big trips. In the US, I fly Southwest whenever possible and they allow re-booking with no penalty and no additional cost, unless the next flight is more expensive, of course, when you pay only the difference. Cancellation means a trip in the bank whenever you’re ready, same financials apply.

    Your part of the country is quite beautiful, but I know you’ll enjoy your travels.

    All the best,

    janet

    • Such sweet comments. Thank you Janet. I think this is the hardest part, now. Food repulses Ron, he has to battle to keep weight on, and he is anxious to get outside and hike and fish.
      Little by little. We need more distractions. Game of Thrones was excellent, but we finished all 7 seasons and have to wait until April for the finale.
      Anyway, we are anxiously awaiting spring. Hugs, Janet.

      • It’s good to have things to look forward to; thinking of the future is positive!! Do you have Netflix? We love “Blue Bloods”, “NCIS”, and “Midsomer Murders.” We’ve worked through the entire series of the first two several times and are doing our first complete round of MM now. “Dare to Be Wild”, based on a true story about gardening, is quite interesting as well, although I only saw the last bit. My husband watched the entire thing.

  6. Debbie and Ron, I am SO happy to read your whole story, including happy ending. I love happy endings! Email me sometime. Katie

  7. Cancerlandia is not on anybody’s travel itinerary but since you had to go, you were better off in the US than Nicaragua. Your timing was perfect under the circumstances. Your home in TN looks like a nice place to rest up and plan your next adventure. We explored the Baltics last summer: Medieval cities, modern transport, cheap beer and pork. Educated people, brutal history. Flat. No bumps on the roads…

    • Thanks Bruno. Haha! No bumps on the road! Now that is what we are really looking forward to experiencing! I wish we could have visited in Patzcuaro over the winter. But, like you said, the timing was perfect for us to spend the winter in our cozy home. We hope to see you this coming winter. Let us know if you will be in Mexico and we will come visit. Either that, or Canada.

    • Hola mi amiga! Holly, did you know that we had planned to be Susan and John’s housesitters in Medellin last Christmas? We were so disappointed that we couldn’t go. In fact, we were going to start our six month trip in Panama and come visit you. Stupid cancer! But, we are gearing up for our next adventures and will be healthier than ever! Thanks, Holly.

  8. Thank you so much for sharing your trials and triumphs through cancerlandia! May Ron continue with successful treatment and results. I look forward to reading your upcoming posts.

  9. GOD BLESS YOU AND YOUR BLESSED HUBBY RON…….WHAT A STORY , FULL OF FAITH HOPE COURAGE LOVE AND PEACE..
    .THERE ALWAYS A ….CHANGE …YOU MAKE PLANS ..BUT GOD HAS HIS OWN PLANS FOR YOU……YOU HANDLED ALL PERFECTLY THUS HAVING A POSITIVE AND LOVING , FINALE.. .IM SO HAPPY TO SEE YOU BACK THO , AND LOOK FORWARD TO ALL YOUR NEXT MOVES ECT…
    IM HAPPY IN LAKE CHAPALA …I LIVE IN RIBERAS DEL PILAR , VERY NEAR AJIJIC MEXICO, BEEN HERE FOR 4 MONTHS .
    THE WEATHER IS FANTASTIC …WARM NOW IN THE DAY , ALWAYS SUNNY , NOT A CLOUD IN THE SKY , COOL AT NITE…..REALLY PERFECT….
    IM BUSY WORKING/VOLUNTEER WORK… DOING WARDROBE FOR AN UPCOMING MUSICAL HERE…SWEET CHARITY ..ALONG WITH ANOTHER WOMAN MY AGE BUT WAYY BETTER THAN I ,SHES BEEN IN THE THEATRE FOR OVER 13 YEARS HERE SO THANKFULLY KNOWS THE ROPES , HAS A BIG CAST , OPENS MARCH 22ND AT LAKESIDE LITTLE THEATRE HERE.
    IM STILL STUDYING SPANISH AND MOVING FORWARD SLOWLY , NEED TO REPEAT LEVEL 2 AND MAY 27TH IM TAKING MY MOM TO FLORIDA , TO SARASOTA, FOR HER 86TH BDAY, WE LEAVE MAY 27TH AND FLY BACK JUNE 10TH , FROM MIAMI.
    WE WILL BOTH VISIT WITH FAMILY AND FRIENDS .
    .LITTLE BY LITTLE IM MAKING NEW FRIENDS HERE..THERES SOOOO MANY EXPATS , FROM THE U.S AND ALL OVER CANADA , AND MORE……
    TONS OF THINGS TO DO HERE FOR AN EXPAT , BUT ITS STARTING TO GET VERYYYYY BUSY HERE NOW , THE WORD IS OUT!!!!!
    AJIJIC IS GETTING MORE CROWDED ..AS EVERYWHERE HERE..GONE ARE MY DREAMS OF BUILDING , AND WE WILL RENT ANOTHER HOUSE END OF SEPT.
    THERE BUILDING 16 APTS NEXT DOOR!!!!! THO I LIKE THIS HOUSE ILL LOOK FOR SOMETHING A BIT MORE INEXPENSIVE AND QUIET ..(.REALTOR LIED… )
    RUNNING COOL ADS IN LCS ( LAKE CHAPALA SOCIETY )….GOOGLE IT…
    NEW MAG ….ITS ALL IN COLOR ..FOR MY PHOTOGRAPHY, AND LOOK FORWARD TO GOING TO A RESTAURANT NAMED OUI OUI TO SEE THE OSCARS !!!! LITTLE BY LITTLE GOING TO MORE GALAS AND PARTIES ,,,LIKE I SAID ..U COULD”” NEVER””” BE BORED HERE!!!
    IM HAPPY I WAS LED HERE ,,I CAME CLOSE TO MOVING TO NICARAGUA ,,,AND AM SO SAD THEY STILL HAVE PROBLEMS…I HAVE A FRIEND THERE WHOM IS SUFFERING , ALONG WITH HIS FAMILY…ITS ALL SOOOO WEIRD!!!! !SOOOOOO UNKIND………
    AND WELL THATS ABOUT IT …..MOM AND LULU BALL GOOD . LULU TURNED 9 ON VALENTINES DAY , ALL HER LIL DOGGIE FRIENDS CAME TO …EAT!!!! HAHAHAA
    SOOOOOO, LETS GIVE THANKS TO JESUS FOR THE HEALING AND I PRAY U BOTH WILL BE LED TO ANOTHER SPOT …JUST PERFECT FOR BOTH OF YOU……
    ENJOY WHERE U ARE NOW THO!!!!!
    LIGHT , AND GOD BLESS,
    HEIDI
    REMEMBER ME????
    SOOOOOOOOO GLAD YOUR WRITING AND DOING PHOTOS AGAIN!!!!!!!! YEAHHHHHHHHHH!!!!!!!!!

  10. As they say….the secret is in how you react to obstacles. I so admire you in every sense possible. You are an example of turning lemons into lemonade. When the going gets tough the tough get going ! I’m so very happy for you and Ron. Looking forward to reading about your future travels. Que vayan con Dios ! Congratulations

    • Shaman, following your 2 year trial with trying to grow your leg bone was quite the ordeal, too. I admire you for your strength and fortitude. It amazes me that we really never know how strong we can be until we are faced with a crisis, whether it be health or a revolution. Life sure keeps us on our toes, right? Hugs to you.

  11. My best wishes for Ron!
    I have been following your story on FB what a tragedy. But it’s fortunate that he found good healthcare. I doubt the same quality is available here but I hear Pellas now is pretty good.
    As I understand Opiate type drugs are still VERY tough to get here.
    Again good luck to Ron!

    • John, we wondered if we could have received the same treatment in Managua, too. I had two retina surgeries, one in Managua at Vivian Pellas and the other one in the US. Both were comparable in cost and treatment, but at VP it was much more personable.
      Since the biopsy in Nicaragua was benign, we wondered how long it would have been before Ron’s cancer spread uncontrollably. The doctor said within a year it would have spread throughout his body and would have been very difficult to cure. So, we consider ourselves very lucky that we left Nicaragua when we did.
      When I was a US embassy warden in Nicaragua, I had a meeting with healthcare personnel from Vivian Pellas, and lawyers as well as other concerned people. The meeting was to find out about palliative care. So many expats were dying of cancer and I wanted to know what services were available and what we could do to help. Opiates are VERY controlled in Nicaragua and it is impossible to get them outside of an inpatient hospital setting.
      Here, Ron had to practically sign his life away to get pain meds, which he really didn’t need. Edibles and THC tinctures have been wonderful and the perfect alternative to addictive and expensive opiates.

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