Smith Island 1

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medical          *
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It's Monday Dec 12  at 10 AM...It's a little more than 48 hours since my 3rd round of chemotherapy. Based on past experiences, significant side-effects are more likely today and tomorrow. The initial changes I note are warmness in my palms and soles with numbness and tingling in finger tips and heels. In the past this has been followed by severe aching in the hips and things and darting, stabbing pains in the little joints of the fingers particularly. So far, aching in hips and the beginning of the sharp little pains that are occurring tens of times a minute.

I've felt a significant increase in shortness of breath (medical term is dyspnea) since noon yesterday. When I noticed this in my prior two rounds of therapy and I was concerned that I had lost some large amount of lung tissue I got a CT scan to rule out a pulmonary embolus a couple of weeks ago. Now it is pretty clear to me that it is a side-effect and just something I'll have to accept and adjust how fast I try to do things.

My CT scans on 12/6 showed two more areas of bone involvement, Lumbar vertebra 1 and my right scapula. I was started on the drug Zometa to reduce the risk of bone fractures. The remainder of my chemo combination was continued. Carboplatin, Paclitaxel, and Avastin.

It's Tuesday Dec 13 at 1 A.M. The shortness of breath has been severe for most of the day. I feel breathless getting into and out of the car. Late yesterday afternoon, the generalized achiness and joint pains became much more prominent. I crawled into bed around 8 PM but couldn't sleep past midnight.

I'm planning to try to fly to D.C. on a red-eye from Oakland on Friday morning. There are some people I want to see. I was thinking of calling my journey Cher's Ultimate Final Good-Bye Concert.

It's still Tuesday but about 6 P.M. Shortly after noon the joint pains were back in spades. I took some more Advil and Oxycodone, got a nap and woke up feeling able  to do some errands, like check tire pressures on the RV, get diesel fuel, and replace the fish-eye mirror on the passenger-side RV mirror that was too small to clearly show my blind spots.

Thurs 6 P.M:  Wednesday was much worse than Tuesday. There were  muscle and joint pains for most of the day and I went to bed exhausted at 8 PM. I was up again at 1 A.M. and took an oxycodone and went right back to sleep for another 4 hours. When I awoke again I was so miserable, I knew that there was no chance that I could travel today. That realization was a relief--I could remain within a few minutes of my home and comfortable bed and not be concerned about feeling super sick in a plane over Iowa.

I don't know that it is possible to completely quash denial of this illness prior to death. It seems my thoughts and plans about making a trip to the East Coast were a part of my denial. I do know that there was a strong, rewarding sense of relief that I would not have to test myself today.

Peace an Old-Fashioned  Fat Cat
I'm sitting here at my dining room table. Jasmine is cooking and the television is on and dialed into some woman named Spelling talking about selling her mansion--a lot of noise to me. So, I've put on earphones and I'm listening to Fats Domino's early hits. Next to me is a 16 year-old tabby named, Peace, who has been a recipient of Jasmine's love since her 5th or 6th week of existence.

Peace weighs a little over 20 lbs.

Peace: December 15, 2011

Both Peace and Archie have anxiety disorders. (Do you think being around psychiatrists makes animals crazy?) If Archie is kenneled, he will pace incessantly to the point that his foot pads break down and begin oozing blood. From an early age, Peace could not tolerate being around strangers and she would swat seriously at anyone who attempted to reach out to touch her. You can imagine that our dysfunctional family was not one of the favorites with vets.

In the winter of 2008-2009, peace began to lose weight and to become weak in her hips and back legs to the point that she was unable to jump up on chairs. She was also drinking and urinating more--classic symptoms of diabetes. We began Peace on insulin in January 2009. However, she has not had a single blood test since that time. Jasmine is treating her the way in which diabetics were traditionally treated in the 1950s and 1960s, with urine sugars instead of blood sugars.

In general, the kidney filters everything in the serum into the kidney tubules. Then the kidney works to pull   back all of the good stuff in the filtrate, such as the salts and sugar (glucose), while letting the waste products, the urea, exit into the bladder for final excretion. However, above a certain level of glucose in the bloodstream, the kidney will be overwhelmed and will be unable to recover all of the glucose which will "spill over" into the urine.

Unlike our era, in the 50's and 60's, blood sugar testing required one's appearance at a laboratory for blood draw and hours for doing the test itself.  However, there were testing strips that could be used to measure  immediately the concentration of sugar spilled in the urine. Jasmine began to use these for Peace in 2009 which means that Jasmine has been routinely collecting urine samples from her cat for the past 3 years. Of course, she has to be aware enough to know when the cat is heading for the litter box. Peace is calm enough to allow Jasmine to put a collection bottle between the urethra and the kitty litter and get a fresh urine on a daily basis. Pretty amazing, huh?

Peace has also developed heart failure. She can get exhausted while eating and require a time out for several minutes where she lays down next to her plate before gathering enough strength to finish the meal. She can also become overwhelmed while walking from her perch in the bedroom to the litter box. I noticed that Jasmine has placed a little box midway between the two sites where Peace can lay down and catch her breath. I call it the step-down unit.

Peace in her "Step Down" Unit

However, in her old age, Peace has turned the psychiatric corner. She has become comfortable around strangers and allows others to stroke her. She purrs almost constantly, much more than during her youth. As sick as she is with her heart failure and diabetes, she appears to be enjoying her life and getting the loved old age that Jasmine envisioned for her.

This devotion to an animal is not something I could have imagined a few years ago and it is easy for me to view it as pathology given the extent of human need in the world. However, the care of animals is an opportunity for us humans to express love and that makes us feel good. It is interesting that neither Jasmine nor I would consider expensive surgery or chemotherapy for our animals. It's not so much about preventing death as seeing the animal enjoy its life. That's sort of where I am right now.

Finally, it is Sunday morning, more than a week after Round 3 of chemotherapy. There is so much I don't understand about the symptoms (and for the most part, I don't have any burning desire to better understand). This round was easier than the last where I was withdrawing from steroids but I'm still feeling very weak with a headache and some nausea this morning. On this round of chemo I was more aggressive with the pain medications, making sure that I was taking oxycontin about every 12 hours as the long-acting opiate source and then adding Ibuprofen and oxycodone on top of that.

Overall, it has become harder to write. Words don't flow well and many can't be reached. It's a far cry from last week when I was on my bicycle for a couple of days.

Olivia
No one in the next generation in our family has shown any particular interest in the practice of medicine, but I got a nice note from my niece, Olivia, a spunky, smart first year student at James Madison U.

Hey Uncle Eric,

Just wanted to let you know, I've been reading your blog a lot lately. It's amazing how you can remember all of these stories, did you ever keep a journal before your blog? Reading back over your blog, i feel as though you're lucky to be writing all of this down. At first your posts about your present condition and all the medical terms you used seemed like a distant universe only physicians were allowed to go, but ever since my health class here at JMU has covered a lot on chronic diseases, i'm starting to understand more. It's all so interesting, I don't know if i'd pursue it as a career though, even though neurology has always been quite engaging... All the biology and chemistry classes seem so stressful though, kudos to you for going through with all of it. It takes passion to get through all those years of schooling..but according to your posts, it's beyond rewarding..
...
Anyway, sorry for typing so much, the words just kept flowing out, and i'd be wrong to ignore them.

Have a nice dinner, (6:40 p.m. your time) much love,
Liv

It would be gratifying for a healthier member of our family, such as Liv, to look at the medical profession as a possible career.

Smith Island 1

In October 1983 my destination was Smith Island. It was very nearly the 350th anniversary of a permanent English settlement there. Rather than carving out a life in a wilderness, I would be trying to balance a life of medical work and time with my children.  They were five and seven. Within a few years the need to establish personal independence would take precedence over the needs of childhood. The things of value that I had to give them required my presence and my time while they were still young. Later would be too late.

Looking back I see my two sons in very stable relationships with two strong and emotionally healthy women partners. No lies or speculations proclaimed as certainties were told them regarding the origin of man.  Since my sons' middle names are Gregor and Darwin, you can guess that my own belief system is post enlightenment. The ten commandments were not drilled into their heads. The golden rule seemed more than adequate.

Maryland was settled by Catholics who landed at St Mary's City on the Potomac in 1634.
http://en.wikipedia.org/wiki/St._Mary's_City,_Maryland

That same year, a group of Protestant dissenters left St. Mary's and sailed east, settling on an island in the Middle of the Chesapeake Bay--an Island  discovered by (and named for) none other than John Smith of Pocahontas fame.
http://en.wikipedia.org/wiki/Smith_Island,_Maryland

The first settlement on the Island appears to have been at Rogue's Point, on the Western edge closest to the future shipping lanes. The name Rogue is assumed to be a reference to piracy.

Distance from Washington D.C. to Smith Island: 83 miles by crow

I  promised the Islanders that I would stay at least one year. I hoped it would be more.

I moved the household from Billings, MT to D.C. with a large rental truck and towed the 1961 Mercedes behind the truck. I left in the early evening in October after stopping at the Worden clinic and to pick up the Liquid Nitrogen Tank. It was raining and I had the satisfaction of dumping the remaining nitrogen into a mud puddle and watching it freeze.

Farmers and ranchers are exposed to heavy doses of sunlight over their lifespan. They frequently develop skin lesions called "actinic keratoses" which are pre-cancerous. One of the treatments is freezing of the lesion with liquid nitrogen. Given that the predominant occupation on Smith Island was fishing, I expected to see a fairly large number of actinic keratoses there as well.

Many farmers and ranchers have liquid nitrogen tanks for storing semen for artificial insemination. I remember taking a rancher back to the treatment room in Worden to sew up a cut. He saw the nitrogen tank and said "What in the hell are you guys doing back here?" I couldn't tell if he was serious but I was very careful to explain that we actually applied the liquid nitrogen to the skin.

In general, I love to drive almost any vehicle, but I could not get comfortable with that moving truck.  I managed to pin myself into a dirt parking lot at a restaurant in Miles City and this required over an hour for extrication.

I took I 94 across North Dakota. At Jamestown and Fargo I noticed a fellow hitch-hiking. He was about my age wearing what I would call now a "Rasta" style hat. I saw him again around Minneapolis and I finally picked him up in Madison.

It was a stroke of luck for me. He had been a truck driver for a good portion of his life and after a hundred miles, he asked me if I wanted him to drive.  I was happy to let him do so. For the next few hours I dozed off and on and listened to his stories about his wife who was 30 years his senior and living in the Caribbean. He was working as a merchant seaman. I was particularly grateful for his help around Chicago where he demonstrated his expertise at navigating through narrowed road construction lanes bordered with concrete slabs.

He drove about 500 miles with only a few breaks and by the time our paths diverged, I was feeling refreshed and I was within a few hours of Washington, D.C.

I got to my father's house and stored furniture Molly wanted to keep for her own place. The next day I was supposed to have the moving truck in Crisfield to meet the boat that would take it to the Island. There was a miscommunication with Molly. I hadn't realized that I would have the children while caught up with the physical acts of moving.

Nevertheless, it turned out to be an adventure and what's not to like about fast food if you are five and seven. The boys and I made the three hour drive to Crisfield. They were fearless even as we took the moving truck over the Chesapeake Bay Bridge and were buffeted by moderate winds.We spent the night in a motel and the following morning, we met Rev. Zollinhofter (Rev Z from now on) for breakfast. He was accompanied by the owner of an old landing craft that would carry the van to the Island.

It was a bleak day. The sky was overcast with occasional drizzle and there was a substantial breeze. There was very little for the boys to do as the boat captain maneuvered the loading in Crisfield. It was a cold ninety minutes to make the crossing over the Tangier Sound  to the village of Ewell, the largest of the three communities on the Island. Finally, the moving truck was unloaded from the barge and was parked in front of the clinic. I had 3 days in which to get everything off and get the truck back to the D.C. area.

Of course the boys were hungry again and I took them to Ruke's Grocery Store.

Ruke's Grocery Store: Ewell, Smith Island

The gravel road in front of the store accesses the county boat dock which is about 100 feet to the right. The county dock is the major hub for ferry launches, excursion boats, and freight delivery. When we arrived in 1983 the structure was smaller. The right most part of the building was a screened-in deck constructed by Reverend Z and a friend in 1984. Since Z was married to Jan, the grand-daughter of Ruke's owner, there was some complaining about the preacher using his time and carpentry skills to benefit his own family.

The grocery part of Ruke's looked very much like a corner store at the beach or a convenience store with respect to the stock. Canned goods tended to be present in smaller quantities, to be crammed into all available space, and to be expensive. Much more of the sales space was devoted to milk, bread, and eggs--the perishable, everyday items.  Grocery shopping at Ruke's was primarily limited to a particular ingredient for a planned dish but it was also a major source of credit for Islanders who were living hand to mouth.

If you popped into Ruke's after 6 PM you would have found four or more elderly watermen playing dominoes at one of the tables. Two or three younger men would be sitting at the counter waiting for food, generally cheese steak subs and fries. The conversations were often general. Someone playing dominoes might be having a cross conversation with someone at the food counter. The Islanders are great for kidding one another and telling stories. The "tall tale" is the specialty of the region and in Crisfield there is a dedicated "Liar's Bench." Ruke's Grocery store was the only place you could get prepared food in the evening. It was also the place to go to find the 6 oz Coca Colas, the ones I remembered from childhood and hadn't seen in years. The six oz glass bottle coke could have been an icon for the island.

Ma Willie was the proprietor of Ruke's. She was a widow when I met her and she ran the store with her daughters Chart (Charlotte) and Mary. Mary's daughter, Jan, the preacher's wife, spent time working in the store as well. "Ruke" was Chart's husband's name. I don't know why or how his name became attached to the store.

Ma Willie
She had a limp and walked from her home to the store twice a day. She opened the store in the morning and with one of her daughters began preparing lunches for the school children. During crabbing season, the women would be working out in the shanties fishing up the soft shell crabs or picking the hard shells. It was often easier to have Ruke's prepare and deliver the school lunches leaving the mothers to continue working. Softshell crabs are quite perishable. They needed to be packed in ice and awaiting the 4 P.M. ferry if they were going to make it to Fish markets on the East Coast, including the Fulton Market in New York.


If I had to find a single adjective to describe Smith Islanders as a group, it would be guileless.  They could be quite cunning when it came to besting the sea for a catch, but there was a remarkable simplicity and gentleness in their treatment of other human beings. Throughout the region Islanders were known to be "good people" who could be trusted. If I had to find a noun to associate with the Island, it would be food. They love to eat and they relate to others by giving food. (The most notable historical act of giving food was feeding the British fleet that passed through on the way to sack Washington in the War of 1812.)


After I left the Island, Willie had a series of small strokes that left her paralyzed on the right side and unable to speak. After a time she was no longer able to recognize family and required full nursing care, so she was placed in a nursing home in Crisfield. The family was very much aware that Willie wanted no extraordinary measures to prolong her life in this situation. It had been discussed on several occasions.


I had a conversation with daughter, Chart, about Willie's condition. There was no realistic hope of improvement. There was no evidence of quality of life. She was unable to recognize, much less communicate with her family. She had stopped eating. The nursing home wanted to put in a feeding tube. I pointed out to Chart that her mother's wishes were for nothing heroic--that a feeding tube would only prolong the current existence--and we already knew that Willie wanted to die rather than be artificially maintained.


It was several months before I spoke with Chart again. She told me that her Mom had just died. I was so surprised. Chart started crying. "I know we talked about it doctor Sohr, but the nursing home just kept after me. They said 'Are you going to let your mother starve to death?' Chart had been pressured by the professionals to permit a feeding tube.


We have come to the point in our country where some professionals have taken on the seamier aspects of businesses and can look at a dying human being as an income stream. For shame!


The First Week on the Island
The first day had been eventful and the evening was busy as well. There were actually Islanders wanting medical care. I had to turn them away until the following day when I would have had the opportunity to find some of my basic equipment. I had to rip my way through boxes to find linen to make beds for the boys. In the meanwhile, several men came by to offer their much appreciated services moving furniture and boxes. Reverend Z was in and out several times.

Finally it was time to put the boys to bed.  My bedtime story-telling repertoire consisted of three tales known by heart and complete with voices, expressions, and certain sound effects. I didn't read to them before bed any more, because that required light. A recitation allowed me to turn down the lights to a bare minimum and to increase the drama. I had read "The Uses of Enchantment" by Bruno Bettelheim and I gravitated toward the old fairy tales.

The kids picked a story and I told it. On this day they were both exhausted and were asleep quickly. Then I was alone with my thoughts and entered what quickly became my favorite part of the day, the first hour or two after the children have gone to sleep. I'm sure that billions of women know exactly what I am describing. From the moment of awakening, the demands of others take precedence and provide the framework of the day. As the primary caregiver I can make some modifications and change a few things here and there, but I am on a fixed track, maybe even a treadmill. However, as soon as the children are asleep, the chains and weight of responsibility are lifted. I could sit there with a cup of coffee and relax in the peacefulness of this new place. It was a delicious feeling and I would experience this almost nightly for the next several months.

Within a few days the van had been unpacked and returned to the rental company. I constructed some shelving downstairs in the clinic to store books. I went through the existing patient charts and decided to keep files by birthdate. I looked at the existing equipment and decided that I couldn't trust the sterilizer that in the clinic. I had accumulated a number of surgical instruments in my practice with Stan. Later that week, I found that the Crisfield Hospital accomodated my request for help by sterilizing my equipment for the first few months.

The "doctor's house" was not in very good condition. There were several leaks in the roof and it was difficult to find dry areas for stationing the beds during rains. However, it would not be possible to just repair the roof. The plans for the doctor' house included opening up one side of the roof and placing five 4' glass windows to form a long wall that would given unobstructed views of the harbor and the Big Thoroughfare. A new roof would have to wait upon completion of the addition. When it was done, there would be a million-dollar view, but that was in the future. At the time we arrived, we had no way of knowing that we would be living in a construction zone with a leaky roof for the next year.

In order to work away from the Island, I needed child care help. Thelma Goodman was recommended to me and she agreed to watch the boys and to feed them while I worked away in Crisfield. My first stint at the hospital turned out to be a very rainy time and I returned to the Island to find all of the bedclothes wet, with numerous buckets on the floor to catch drips. The boys had renamed Thelma Goodman as Thelma Badman. The clothes dryer was not working properly but one of the islanders who did electrical work came by and got it running so that I could get clothes and bedding dried.

The Island practice would be much different than Montana. I would no longer be doing obstetrics or the immediate care of the newborn. Most of the women had established relationships for their routine gynecological needs such as Pap Smears. There was no x-ray machine on site and there would be few opportunities for routine orthopedics.

Smith Island Economics
The economy of Smith Island is almost entirely cash. After seeing a waterman for a visit, the patient would generally reach into his right front pocket or into a wallet and say, "Thanks, Doc! Let's settle up." Then I would be paid in cash. Seldom was a receipt wanted. The right front pants pocket was generally the Islander's bank.

Even boat purchases were commonly straight up cash rather than mortgaged. When an Islander lost a boat due to a fire or sinking, it was common for the community to come together and purchase a boat that could be utilized to continue fishing.

A lot of charity was personal and straightforward. As an example, I had a patient with kidney disease who was being treated at a Johns Hopkins clinic on a monthly basis. It was common for neighbors and friends to come to the parents in the days prior to the appointment with what was called "a piece of money," cash that could be used for travel or medical expenses.

Many Islanders are wary of mainland banks. In 1985 there was a hurricane, Gloria, that for a few days appeared to be aiming for the mouth of the Chesapeake. Evacuation from the Island was recommended and there was plenty of time to do it. A number of widows left carrying suitcases that they refused to let others handle. It was suspected that this was a parade of thousands of dollars from hiding places all over Smith Island.
http://www.hurricanes-blizzards-noreasters.com/HURRICANE-GLORIA.html

Smith Island is actually a cluster of islands, gradually sloped hilltops that are barely peeking above the surface of the Chesapeake. There are hundreds of square miles of shallows that surround the Island. Throughout the shallows are a number of "guts"--deeper cuts that permit navigation.

These shallows are among the world's most productive habitats for the blue fin crab. In order to increase in size, the crab must shed its hard shell (called molting) and remain vulnerable to eels, birds, and other crabs for several hours while a new shell is formed and hardens. I can imagine myself in the naked crab's place, hunkering down and helpless on the bottom hoping to survive undetected for the next few hours. It seems similar to my father's story about being in a foxhole and being under bombardment by mortar fire. To attain adult size and the ability to reproduce, the female molts several times, ten is the average number that I recall.

Since the Islanders are self-employed fishermen, they don't get paid if they don't work.  The most common question for me in clinic was "Doc, what do I need to do to work tomorrow?"

I established general clinic hours beginning at 6:30 PM in the evening. It was first come, first served and the clinic continued until everyone was seen. I was generally finished before 9 P.M. The boys got a kick out of sneaking down the circular staircase and hiding in the laundry room and eavesdropping on the conversations in the waiting room.

McCready Memorial Hospital 

McCready Memorial Hospital, Crisfield Maryland

It is hard to imagine a more beautiful location than the hospital in Crisfield. I was surprised that the structure was not purchased by a group of plastic surgeons for the care of the wealthy from Baltimore and Washington.

The buildings were on a peninsula with greenery and water all about. It was possible to reach the hospital by land, sea, or air. There was a dock capable of handling boats of almost any size and families from Smith and Tangier Islands were able to bring their boats to within a stone's throw of the emergency room.  I saw two or three obstetrical cases arrive in this fashion in the four years that I worked there. There was also a heliport to handle emergency evacuations to Salisbury and Baltimore, and there was a connection by road to Crisfield proper.

The evening nurse, Vesta, was originally from Smith Island. She spoiled me terribly and brought me supper whenever she worked in the emergency room. I generally slept in an unoccupied hospital room and spent blocks of time doing programming work, reading medicine, and working on another piece of computer software for patient records.  Somewhere during the first year on the Island I learned how to make crabnets and I would occasionally bring a net or two to the hospital to complete.

Despite the apparently poor hourly rate for work in the Emergency Room

• I estimated that the 24 hour shift really involved less than 8 hours actual medical work during that 24 hours 
• I generally managed to get a few hours of sleep during shift
• I wasn't responsible for any of the admissions to the hospital although I tried to help out and do the history and physical for the attending doctor
• there were always beds and I wasn't trying to turn away patients
• I seldom felt overwhelmed--generally I was pretty comfortable with the pace of work
• Salisbury, Maryland with a tertiary facility was less than 45 minutes away by ambulance

When factoring in all of my requirements and the actual burdens of the job, the hospital employment worked out well.

Settling In
The first few months were time of settling in. On my first Sunday on the Island, Doris Spriggs sent me a traditional Smith Island dinner, stewed chicken with onions, potatoes, carrots, turnips, and dumplings--all  in the same pot, with a large slice of Smith Island Cake for dessert.

Since then, this cake has been named the "State Cake" for Maryland.

Smith Island Cake: More traditional is yellow cake.