Medical Help on the Road

Our red-shirted group of Alfa owners gathered for this group shot on the last day of our rally.

One of the challenges for wandering folks is to get medical services along the way. I need to have my blood tested for my oncologist each month and Friday was our day to do this. 

There’s a national company called Quest that has been doing my tests and I have an AP that helps me find local outlets. Sure enough, Fredericksburg, Texas, had a Quest operation at the local hospital.

We left our coach before dawn and the hospital volunteers welcomed us. When we got to the registration desk, though, life began to get challenging. The woman said she didn’t “have a code” for our procedure, even though I carry a prescription for what is needed from my oncologist. She called in a supervisor who came to the front desk and leaned in towards me.

“We won’t be able to help you because we don’t have a code,” she said. Her voice was high and it was as though she was talking to someone with diminished capacity. I told her I understood what she was saying, but couldn’t she get a code if it was so important. “No,” she said. “You don’t have the right insurance.” Again, she was speaking to me loudly, forming each word as though I were 98 instead of 78.

Where do I go to get this taken care of? Go to Bernie, she said. Now I was really confused. But she really was saying we should drive south for 50 minutes to the town of Boerne, Texas, where there was an actual Quest Diagnostics lab. They would take care of our needs.

It was a pleasant ride through the Texas hill country. And then we got off at the Boerne exit, there was Quest. I was taken in hand by Lupe, a technician who said she’d have to call my oncologist to get “the code”. She did and I was called in to have my blood drawn. I faxed results to Bradenton, Florida, in a couple of days and that allows my doctor to adjust the dosage for the various meds I’m on. 

When the results were sent to me electronically, I faxed them to my three doctors. My oncologist's assistant called back with word that my potassium levels are too low, even though I take straight potassium each morning. The Revlomid  I take is fighting my ability to make potassium. He suggested I add two bananas a day to my potassium regimen. And so we did. 

We’ve been in Fredericksburg for the rally of Alfa Motorhome owners. There are 100 motorhomes here – a quite amazing sight. It is reminiscent of the salmon runs we used to see in Alaska. The fish would battle each other to swim upstream and deposit their eggs and sperm before dying. All these Alfas look alike, though the owners have done various things to make each home individual with flashy paint jobs.

We attend seminars that are relevant to our lifestyle… subjects like analyzing engine oil, getting better wi-fi connections, installing upgrades to our coaches. Plus it’s fun to meet up with other Alfa owners from all over the U.S. and Canada.

Now we have headed north to Waco, Texas. We’re parked at a Corps of Engineers park on a lake and we are hunkering down for a spell of nasty weather. There’s a disturbance to our west that seems to be heading our way. Tornadic winds are in the forecast, along with large hail. We decided to lay low in the park instead of pushing farther north to a planned overnight stop at a casino in southern Oklahoma. Stay tuned for developments.

On Our Way to Fredericksburg, Texas

This memory quilt is displayed inside the Care Center with messages from the Escapee members.

A closeup shows the messages on the quilt. The numbers represent the Escapee membership numbers. 

All of you who do not roam this land probably know little about the Escapees organization. It’s a group that supports wanderers in the RV world. 

We live in an Escapee resort in Wauchula, Florida. And we arrived at the Escapees main resort in Livingston, Texas, with two goals in mind. 1. We wanted to see the resort and meet the people. It is huge and, I believe, unique. In addition to hundreds of RV sites for permanent and visiting travelers, there are deeded lots with homes and motorhome ports. These are similar to carports…but much taller, of course.

And 2, we also wanted to tour the Care area of the resort. This is a unique service for people like us. In the event a traveler is incapacitated maybe with a broken hip, knee replacement surgery, Alzheimer’s, a myriad of other problems, if you can get your motorhome to the resort, they’ll find a space for you and provide support, including meals, nursing care and other services for a remarkably low cost. We had breakfast in the Care dining area and visited with some of those who need the care. And I was touched emotionally by all of the caring people who volunteer to make lives better.

While we sat eating our breakfast, a diminutive woman in her eighties approached us and asked if she could have a hug. Everyone at the table was happy to oblige.

We were able to reach out and help a couple who had just arrived at the resort. When they disconnected their car from behind their motorhome they found its battery was dead. We were able to give them a jump start. On our last day there, they must have seen us readying our rig for departure. They came over to thank us again for our help. The woman asked if she could pray with us. And, while I’m not a big fan of public displays of prayer, we agreed. We were touched by her caring about our safety on the roads as we left the park.

Cassandra and Jo work on her wedding dress in the coach.

While at Escapees, our eldest granddaughter, Cassandra, had flown to Houston with Mark, her fiancé, so she could meet with Jo. Cassandra and Mark are getting married in August and she wants to wear the wedding dress Jo had made for her mom 26 years ago. She brought it down from the north. We picked her up and, as soon as we got back to our motorhome, Cassandra stepped into the dress, and Jo got to work modernizing it.

She worked essentially non-stop for two days nipping and tucking, adjusting and redesigning the dress. This involved the removal of dated puffy sleeves,

Cassandra naps during the dress rebuild.

changing the neckline and adjusting seams here and there. It was a herculean effort. And, quite amazingly to me, Jo had discovered she had a piece of her own wedding dress which she has created back in 1962 for our wedding. She figured out how to incorporate that memento into Cassandra’s wedding dress.

Now we have moved on to the west of Houston. We are on our way to Fredericksburg, Texas, in the beautiful hill country of the state. We are surrounded by a million blue bonnet flowers along the highways, a legacy of Ladybird Johnson, the former first lady. She took it on as her role to beautify her home state by encouraging the sprinkling of seeds along the highways and byways with wild flowers. Her work has paid off for the land is a carpet of reds, pinks and blues and is a treat to drive through.

We have pulled into a Corps of Engineers park in Brenham, Texas. Yegua Creek Park has a campground that overlooks Summerville Lake and we are parked on the shore of the lake with very few other folks who are braving the cool weather. The beauty of Corps of Engineers campgrounds is that people our age get to camp for half price - $14 a night. 

We stay here for three nights before pushing on to Fredericksburg, our destination for the first leg of our tour. We will be attending a rally for owners of Alfa motorhomes. There’ll be seminars and social get-togethers among dozens of like-minded Alfa owners. All of us band together because the Alfa no longer is manufactured in the U.S. But we all love our unique vehicles because of the outstanding design of the rig.

Fredericksburg also will be my first test of having my blood checked so that my oncologist and nephrologist can keep an eye on the state of my kidneys as well as my creatinine levels. I’ll have to find a lab that will do the necessary blood draws and analysis and then the results will be sent back to Florida to my doctors. 

This will be a monthly procedure for the duration of our journey. Fredericksburg also is to be the first test to see how I am managing in terms of physical strength. So far, so good, I feel. I have never been good about pacing myself. But I am relearning how to live life, as well as drinking a gallon of water every day. That’s hard, by the way. Just try it!

A Prince Among Slaves

We have come to the edge of the Mississippi, to the town of Natchez. We are lured here by a story that is simply too good to ignore.

It tells of Abdul-Rahman ibn Ibrahim Sori was a Fulani Muslim ruler (Emir) born in 1762 in the city of Timbo, now located in Guinea. His father, Almami Ibrahim Sori consolidated the Islamic confederation of Futa Jallon in 1776, with Timbo as its capital, where Abdul Rahman lived and studied. 

"He was learned in the Islamic sciences and could speak at least 4 different African languages, in addition to Arabic and English, and in 1781, after returning from study in the renowned city of learning-Timbuktu, Abd'r-Rahman joined the armies of his father. 

At age 26, he was made an Emir of one of the regiments that conquered the lands of the Bambara and in 1788 his father "made him the head of a 2000 men army whose mission was to protect the coast and strengthen their economic interest in the region. It was during this military campaign that Abd'r-Rahman was captured and enslaved.”  

He was sold to the British who brought him to Natchez, Mississippi where he labored on the cotton plantation of Thomas Foster for more than thirty-eight years before gaining his freedom. In 1794 he married Isabella, another slave of Foster's, and eventually fathered a large family: five sons and four daughters.

By using his knowledge of growing cotton in Futa Jallon, Abdul-Rahman rose to a position of authority on the plantation and became the de facto foreman. This granted him the opportunity to grow his own vegetable garden and sell at the local market. During this time, he met an old acquaintance, Dr. John Cox, an Irish surgeon who had served on an English ship, and had become the first white man to reach Timbo after being abandoned by his ship and then falling ill. 

Cox stayed ashore for six months and was taken in by Abdul-Rahman's family, where he was tasked to teach Abdul-Rahman English. Cox appealed to Foster to sell his "Prince" so he could return to Africa. However, Foster would not budge, since he viewed Abdul-Rahman as indispensable to the Foster farm. Dr. Cox continued, until his death in 1829, to seek Ibrahim's freedom, to no avail. After Cox died, his son continued the cause to free Abdul-Rahman.

In 1826, Abdul-Rahman wrote a letter to his relatives in Africa. A local newspaperman, Andrew Marschalk, who was Dutch, sent the letter to United States Senator Thomas Reed from Mississippi, who was in town at the time, and Reed forwarded it to the U.S. Consulate in Morocco. Since Abdul-Rahman wrote in Arabic, Marschalk and the U.S. government assumed that he was a Moor. After the Sultan of Morocco Abderrahmane read the letter, he asked President Adams and Secretary of State Henry Clay to release Abdul-Rahman. In 1829, Thomas Foster agreed to the release of Abdul-Rahman, without payment, with the stipulation that he return to Africa and not live as a free man in America.

Before leaving the US, Abdul-Rahman and his wife went to various states and Washington, D.C. where he met with President Adams in person. He solicited donations, through the press, personal appearances, the American Colonization Society and politicians, to free his family back in Mississippi. Word got back to Foster, who considered this a breach of the agreement. Abdul-Rahman's actions and freedom were also used against President John Quincy Adams by future president Andrew Jackson during the presidential election.

After ten months, Abdul-Rahman and Isabella had raised only half the funds to free their children, and instead left for Monrovia, Liberia, without their children. He lived for four months before contracting a fever and died at the age of 67. He never saw Fouta Djallon or his children again.

The funds that Abdul-Rahman and Isabella raised only bought the freedom of two sons and their families. They were reunited with Isabella in Monrovia. Thomas Foster died the same year as Abdul-Rahman. Foster's estate, including Abdul-Rahman's other children and grandchildren, was divided among Foster's heirs and scattered across Mississippi and the South. Abdul-Rahman's descendants still reside in Monrovia and in Natchez Mississippi United States. In 2006, Abdul-Rahman's descendants gathered for a family reunion at Foster's Field.

In the boondocks...and loving it

Peace and calm is everywhere in the Homochitto National Forest.

We’re in the boondocks of Mississippi and loving it. Homochitto National Forest is an old-growth forest, with pine trees stretching 140 feet into the sky, magnolias and oaks and a campground that’s a little piece of heaven. There are three other campers in our section of the forest. We have 50-amp electric and water on a flat piece of land. And we pay $13 a n­­­­­­­­ight. No one needs more than this!

We’re about forty miles east of Natchez on the Mississippi River and we’re pretty isolated – no internet, very marginal telephone service and a little lady who met us at the end of a four-mile road into the forest. She’s a volunteer who has been here all winter in her splendid isolation. She told us the best places to

park for a couple of nights.

We wandered down to the edge of Clear Springs on our first evening, sitting in the golden light of a setting sun. A pair of locals were fishing for brim, with a fallen branch in the spring that carried about 30 turtles. Sun glittered off the water and through the bullrushes, with spring busting out all around us. Blossoming trees – dogwoods, azaleas - and fragile little white violets and bluets glowed in the final hour of sunlight. We’re in heaven.

We can pick up NPR radio for Mississippi but not much else. And that’s just fine.

We’d driven a long day from Alabama where we stayed a couple of nights in Escapees Summerdale Plantation  Park. This is a huge development with a massive community hall where we joined the other residents for a chili and chicken dinner. All services are available there – with the exception of the swimming pool. This huge pool has been closed for the winter because the solar-powered heating system i­s broken, resulting in water that was too chilly for the old geezers.

On our way to Summerdale, we found our Honda Fit, which we tow behind the motorhome, refused to start when we pulled into a rest area. We got a lithium-ion jumpstart from a fellow traveler out of Montreal. An hour later, when we pulled off the interstate at a Walmart so we could purchase our own battery jumper, we park alongside the same Canadian couple. He asked if we wanted another jump!

We purchased our new lithium ion jumper and, when we returned to the rig, we opened the box. Oh-oh. The box was empty. We returned to the store to complain that we’d just spent $74 for an empty box. The manager was suspicious but issued us a credit and we found a box with the proper battery inside it. We were thankful that we hadn’t driven off down the road with our empty box.

Facing the Unknown

Our 40-foot motorhome awaits its first launch in 15 months.

It has been 15 months since I came face to face with my first days of battle against the cancer that appeared in my body without any real warning. Oh, I had aches and pains when we volunteered at the National Wildlife Preserves in Long Island two years ago. But I thought, at the time, that I was just beginning to feel my age.

But now we are ready to re-launch our wandering after my bemused oncologist, Manjesh Lingamurthy, gave us the go-ahead to put our motorhome in gear and wander.

We begin this Saturday by taking our first baby step. We’ll leave our home base in Wauchula, Florida, and drive the motorhome over the Tampa Bay Bridge. It’s only a journey of about 2.5 hours. But it follows the pattern we have followed all our lives, even when we lived aboard our many sailboats.

We have always liked the practice of cutting our umbilical cord and setting out ... but not going too far. We used to leave on our boat, clear the marina, head downstream and then drop our anchor after two hours. That allowed us the act of separation. It also permitted us to get over the jitters of leaving the land, relaxing for the night and then striking out for a more distant shore.

Aboard the motorhome, it’s no different. We’ll drive to Seminole, Florida, and park on a quiet street. We’ll visit with two dear friends for the night. And then, on Sunday morning, we’ll launch our rig, car attached at the back, and head north toward Tallahassee, in Florida’s panhandle.

Our plans are to head on to Louisiana where we plan to have some work done on the rig by a superb   motorhome mechanic that we have used in the past. Then we wander south into Texas where we plan to meet up with our oldest granddaughter, Cassandra. She has asked for Jo’s help in adjusting her mother’s wedding dress so she can wear it at her own wedding in August.

Westward-ho to Fredericksburg, TX, where we plan to spend 10 days at a gathering of Alfa Motorhome owners. I liken it to salmon coming all the way upriver to meet their own kind...but we won’t be spawning, of course.

This will be where we check on my blood so my oncologist can keep connected with me by analyzing all the platelet counts. We’ll be using Quest Diagnostics as we wander America. We plan to stop for testing each month. In addition, we have to plan our itinerary so we can arrange to have my Revlimid anti-cancer drug delivered by Fedex along the route . This is a really nasty drug, that I’m required to take every other day to keep my multiple myeloma at bay. Even though my doc says I’m in remission, I have to take the drug for the rest of my life. It certainly beats the alternative!

Revlimid, you might be interested in knowing, formerly was called Thalidomide. If you’re old enough, you might remember, in the 1960s, this was given to pregnant women who were having difficulties with viability of the fetus. Its downside: babies were born with flippers instead of arms, among other horror stories.

When I get my Revlimid supply each month, I have to listen to a nurse who tells me I MUST NOT  allow a pregnant woman to come in contact with the drug. I also am warned that I need a full-body condom to have sexual relations with a woman of child-bearing age! That’s only a slight exaggeration !

All these check-ins add complications to our journey. But it surely beats the alternative!

We invite you to join our journey as we continue on our endless journey of discovery.

The war ahead

Left picture shows the area of action. These are high-contrast MRIs.

Let me set the scene for you. We are floating over the flatlands of Florida. My enemy is perfectly clear about its goals: kill me. My enemy is cancer. plasmacytoma, to be precise. It’s been likened to leukemia in my spinal blood.

I , on the other hand, am not defenseless. As we float over the battlefield, I look down at the fighters I have arrayed on my side. They are formidable.
My primary general at this moment is my oncologist. She has the responsibility for marshalling her forces and bringing to bear some pretty incredible artillery. Dr. Mary Koshy didn’t show up on my radar until I had been sent to Dr. Tiesi, a spinal surgeon. I’d been referred to him after spending six months being is severe pain. I came to fear sneezing because it felt as though my entire ribcage would shatter from the pain that accompanied every sneeze.

He had ordered MRIs on my thoracic spine and didn’t like what the pictures showed - little hairlines of blood intertwined all through my spine. He also saw that an old back injury in my T-6 vertebrae had essentially collapsed.
Dr. Tiesi suggested I go under general anesthetic so he could two things: he had a way to build a superstructure to allow him to rebuild the T-6. And then, while poking around in there, he planned to pull out material from my T-10 that could be biopsied.

The worst part of all this, was the general anesthesia. I’ve long known that this is the closest we get to moment of death. This is where lives hang on a tiny golden thread. And this was pretty debilitating. I suffered with  nausea, along with a complete upset of my bowels and my urinary tract.

After ten days of radiation therapy in which the oncologist 's staff created a customized cradle for my body that locked my torso in place while the great orbiting guns twirl around me, finding the ultra-precise locations for their magic bullets. All I do is hang in my cradle, hopping I'll be able to bring down my arms from behind my head before they atrophy

Way over to the left, I have another key soldier. He will be in charge of my chemotherapy. I have yet to meet him but he will ultimately hold the nuclear attack codes and we bring him and his big guns out at the end. Dr. Koshy, my oncologist, explained his role pretty succinctly. "Think of my role with radiation as one in which I precisely aim my pistol and fire my weapon at individual cells in your body. I can hit targets and blast them back to the stone age. But the chemo doctor will be detonating nuclear bombs in your body. He's very important. He's debilitating. But we won't get through this without him."

My primary care physician is the gatekeeper to keep all these moving parks from grinding to a bureaucratic halt. Dr. Vishal Sharma interfaces with my insurance company and none of these specialists get past his door without his recommendation. He is my advocate and I'm glad he's on my side.

I have a band of angels and foot soldiers strategically positioned all over the world. They are you. I want to tally up those troops because they are so important in the fight. Of course we have a treasure trove of friends in the U.S. and Canada. But there are these special folk who touched my life as Jo and I circumnavigated the globe earlier in our retirement. They are Vietnamese, Laotian, Burmese, Pakistani, Indian, Sri Lankan, Nepalese, Bhutanese, German, Cambodian, Namibian.

My most important general - at the very top of the heap - is Jo. She is the rock where I can think through positions, test assumptions, question and second-guess this maelstrom in which I find myself. She looks at the field with me and sees where all the players are positioned, how we get to them. She manages nutrition and energy. She is a jewel beyond price.

I invite you to come along on this journey with me. I have no ideas if I'll come out the other side without fatal wounds. But I do not fear death for I have lived a spectacular life.

A Birder's Paradise

A bobcat checks out my nature camera in the early morning at Anahuac Refuge.

It's the end of the road for us here at Anahuac National Wildlife Refuge in Anahuac, Texas. We leave this weekend after a unique series of experiences. The astonishing – that's the only adjective I can use – number of birds we have seen almost defies belief. The endless, unremitting winds that sweep across the prairie and the rice fields wore on us and flogged the awning above the slide-outs of our motorhome. The joy of meeting birders who make the journey to Anahuac from all over the world – China, the Netherlands, Britain, Germany, Japan, Sweden, and many other countries – added to the adventure.

These people, including folks from all over the U.S., of course, had made the pilgrimage here because they are avid bird watchers. They are ‘way beyond casual birders. These folks have a handful of birds they have not yet seen on their “life list” and they make the journey here because this is where their birds are.

I'll always remember, with affection, a burly Texan who came into the center and, after viewing the whiteboard, he asked: "Do y'all have a slot for a liberal Texan to be listed?"

Jo and I often sit in the visitor center and make the visitors welcome with free coffee, while we invite them to list the birds they had seen on their visit on our whiteboard. We counted 131 species on one incredible day. These fragile creatures had all flown in from Mexico, Central and South America – some as far south as Tiera Del Fuego on the tip of Argentina. They soar north at around 6,000 feet, catching the southern trade winds. Their travels are often done at night so stars are involved in their navigation.

When they cross the Gulf of Mexico, however, they sometimes run into a cold front that pushes down from the northern U.S. and Canada. 

This massive change in the wind is like hitting a cliff and the exhausted birds falter.

Stilts stand in the shallow water in Anahuac.

They drop from the sky by the hundreds. Many of those who drop survive when they land in Anahuac. They eat, rest, sleep and then, when the front moves on, they rise up and head inland and north on their way to the central U.S. or even into the Arctic. Others are not so lucky. Last Wednesday, for example, buntings and warblers and hummingbirds hit the cold front wall. They swooped down in an attempt to avoid the “cliff” and 400 of them smashed into a 23-story building on Galveston Island, to our south. The dead birds piled up on the pavement, lured there by the lights of the tall building.

The government has to provide us with trucks, SUVs and hybrid vehicles so we can get around on our various jobs. We live in a little community of six couples in their motorhomes. 

Distances are vast. It takes us 40 minutes to drive to the Visitor Center at headquarters, where we currently are running the center. Virtually everything we do means a 25-45 minute journey. We are not permitted to use the government vehicles for our weekly grocery shopping or to drive around to see the various sights.

Robert pushes through the swamp in search of
wood duck houses in need of cleaning.

The land is billiard-table flat. There are 45,000 acres in the Refuge, much of it under cultivation by the local farmers. They lease the land for their rice crop with the proviso that they sow a second rice crop which is designated for use by the birds. Even though the fields seem utterly flat, they are not. So the farmers bring in a laser measuring device. This permits them to measure down to one inch. Once they plot that, they plough furrows in their fields, creating dams. The field are then flooded and the little dams are opened and closed to control the water so it is distributed evenly across the entire field. Then they hire a pilot and plane to load up with rice seed and that pilot sprays the fields with rice. In a matter of days, the fields have sprung to life with green shoots. At no point do you see young or old Vietnamese women stooped in the fields, stuffing the rice shoots into the flooded fields!

I should mention that we are astonished by the variety of television stations that come out of Houston, 50 miles to our west. Not only are there myriad Spanish language stations, but you can watch Chinese TV, Thai and Vietnamese TV on numerous channels.

Now, we roll on again, this time to another wildlife refuge in Long Island, New York. It'll be interesting to compare the two refuges...and maybe to meet up with the birds we saw down here in Texas.

One of the hundreds of alligators that live on Shoveler's Pond in the Anahuac Refuge.