Wednesday, January 30, 2013

My Lutheran Confirmation March 1950

March 1950 in Haltern am See  in Germany.  I was  14,5  years old then.  A perfect picture and a memorable event...Here is the story about it....
My parents, my sister and I had left the Russian occupied zone in 1948. At that time there were already controlled travels in place to keep the population there instead of having them leaving and living rather in the British, French or American occupied zones.  I was short of dying of malnutrition in 1948. We crossed over into the British occupied zone in Bebra. We had my aunt living in Kassel, which is nearby. After I had gotten my  meal with milk and Raisins from her  ( which I devoured because I did not have any protein since 2 years), she made an appointment with her doctor to have me checked out. I looked like I would not make it much longer and I was fainting very often. Sure enough - the doctor said he would have given me 2 more weeks of hunger, then I would have died.  

I continued seeing a doctor in Haltern am See, where my father had found work in a sawmill. He had left the Russian occupied zone earlier to find work and a home for us.  Under the doctor's supervision, I gained half a pound of weight every day until I looked like a "normal" girl of my age. My sister is 4,5 years younger than I and she had other health problems caused by malnutrition. She had facial paralysis and stomach problems and her bones are in bad shape to this day, getting more and more prominent in her advanced age now. We had 2 small rooms under the roof.  That was basically what we had in fall 1948 - a roof over our heads. I had no shoes, no clothing - only what I was wearing. When I started to go to Elementary School again in Haltern, I was wearing house shoes which were given to me by our landlord. My mother was altering them with some bands to hold them together to make them wearable. The dress I had was altered already so many times....

My confirmation in church was scheduled for March 1950.  In fall 1949 my mother and I started to visit the two shoe stores in town to look around. At that time businesses had just started to buy inventory, the selection was still scarce. My outfit had to be black  - that was the problem....after so many "dark years" people were looking for more colorful clothing and shoes. One store promised to order shoes in black in prospect of all the other girls who would need them.
What about the black dress? My aunt Else, who was sewing fine clothing for me when we still lived in our hometown Koenigsberg in East Prussia,  came to my rescue. She and her parents ( my grandparents on my father's side), lived near her sister Charlotte in Kassel. She came via train with her sewing machine and the best black dress my grandma had owned and had salvaged by wearing it as one layer of clothing when we all had to flee the Russian WWII front in the east.  She was taking the dress apart and putting it together for me. As you can see. the dress turned out to be wonderful. The fabric was silk, shiny on one side and matted on the other, so I had a matted black dress with shiny trimmings. And a shiny black bow was holding my braids together behind my head....
The New Testament I had to have in my hand during the ceremony I received from the church and the handkerchief I had to put onto the book underneath my thumb came from my aunt also...

But there were other small problems....

One day my mother took me aside and told me that my parents could not buy me anything as a gift nor bake a cake for me. I knew that, my father made little money and my mother was working some hours in housecleaning or dishwashing in a restaurant. That work paid more in food leftovers and second-hand clothing than in money.  I was fine with that, no problem for me.  

Shortly after that conversation  we heard the doorbell  and a woman was asking to come up the stairs and talk to us. She identified herself as a women from a church group which took care of charity matters.
She put a bag of flour, a bag of sugar and a pound of butter on our table to help out with a cake. My mother started to cry. ...And then the lady lifted a small package out of her tote and gave it to me and explained to me that this was a gift from the people from America for my confirmation.  
Then I started to cry.....The package hat 4 big letters in black stamped onto it:   C.A.R.E.
It contained writing paper, 5 pencils, 5 color pencils, an eraser, a bag of peppermint candy and five of the most wonderful "girly"handkerchiefs  I ever have seen - to this day, I might add.  That package was more exciting to me than the entire confirmation ceremony.  

All Americans who are reading this blog now:   My sincere and heartfelt Thanks!  

 I liked the choir singing, the director was my teacher Mr. Benfer who also played the organ on normal Sundays. My parents and I were joining the choir. New friendships developed and more laughter and fun entered our days....

Tuesday, January 1, 2013

Our Happiness was challenged in 2005

Enjoying a summer in the high mountains of Colorado in 2004, 

my husband Dieter had to visit an Emergency Room one day because one leg was swelling up quite fast. Some tests were performed, including a blood test. The doctor did not like  "a number in the blood test", but otherwise did not give us the impression that anything was urgent. Dieter received a prescription of water pills and his leg was coming back to almost normal size. So we took our time as usual when traveling with our motorhome, parking two weeks at a time in resorts, doing sightseeing and having traveling days in between.

We had bought a camping lot in Tierra del Sol Resort in Florence, AZ in spring 2004 and we arrived back there in October. We immediately made an appointment at a doctor's office nearby. This family doctor diagnosed Dieter with Nephrotic Syndrome after having seen the blood test papers from Colorado and after having ordered a 24-hour urine sampling. His diagnosis could mean so many ailments. He was thinking of Multiple Myeloma and he made an appointment for us with an oncologist in Mesa, AZ, where Dieter underwent every test there is, including biopsy of the kidneys, the spinal cord and the hip bone, MRI's and so on. 

The diagnosis was Primary Amyloidosis, a rare blood disorder. The oncologist called it blood cancer. 
The outlook was pretty bleak. We were told that both kidneys could shut down at any moment and that the sickness is potentially deadly....


The term Amyloidosis includes a group of disorders caused by abnormal folding, clumping ( aggregation ) and/or accumulation of particular proteins ( amyloids - fibrous proteins and their precursors ) outside of the cell, but within the tissues of various organs in the body.  The accumulated amyloids causes the progressive malfunction of the affected organ. Normally, proteins are broken down at about the same rate as they are produced, however, these unusual stable proteins are deposited more rapidly than they can be broken down. The accumulation may be localized, general or systemic. 


The oncologist in Mesa did not want to determine alone what to do and was seeking a second opinion by sending Dieter to the Cancer Center in Tucson, AZ. The doctor there was recommending Stem Cell Therapy. He said to Dieter that he would love to have him there on his floors because he loved Dieter's positivity and his humor. We asked him what could happen to Dieter while undergoing this Stem Cell thing...Nothing what he told us sounded good. Dieter rejected this therapy. The oncologist promised to contact our oncologist in Mesa with his advise.

The oncologist in Mesa prescribed Dieter Chemo Therapy which was a high dose of Corticosteroids, together with 2 other meds. His entire body was swelling up slowly, he grew more and more tired and weak, and he gained about 60 pounds on water weight. New Jeans and new underware were needed...

Our neighbor and friend Dick looked after Dieter every day and tried to cheer him up and convinced him that it might be best to keep on working, like building the shed.  The building permit and the concrete floor were already there. Neighbors were helping as much as they could or as much as Dieter let them. I was the painter.
We were told that our shed looked the cutest in the park.... see for yourself:

You also see the back end of our Winnebago Suncruiser we had at that time, and our cat Susi enjoying the outdoors in her cage. She felt very content with that, she went in by herself and meowed, which meant: Close the door.

The swellings were slightly down and the oncologist did blood and urine tests again and decided that Dieter should have a second Chemo Therapy. We said No. We decided to sell our lot to be free again  -  our friend Dick bought it. We had the feeling we had to drive to the east coast, to be "nearer" to our kids and grandkids in Germany....we cannot really explain what our feelings were, we hoped that Dieter would survive, but we were not sure about that. Some force pushed us....
Another friend was offering to drive our motorhome all the way to Florida, so Dieter could rest. But Dieter had the confidence to do that himself. We left - and our friend Dick lost big tears by wishing us well.....

As soon as we had set up camp in Bushnell, FL, in one of our Escapees Membership Resorts, we made an appointment with an oncologist in the Moffitt Cancer Center in Tampa. He ordered a special new test, which confirmed the Diagnosis:

"Primary systemic AL amyloidosis involving the kidneys ( IgG kappa monoclonal gammopathy in his serum)".

Dieter agreed to take the second Chemo Therapy, which was just another random try because there is no known cure for this sickness. This time it was a chemo against breast cancer..

In August Dieter wanted to have a break in scenery, he wished to see the beach. We made reservations in St.Augustine, at Beachcomber Resort, the Gulf directly across the street.

When we arrived there, Dieter got very sick, I mean:  sick-sick. He was able to drive our car from the dolly and made the full hook-up connections and had to hit the bed. We thought the chemo had finally catched up with him. After two days I called 911.

After the First Responders had learned what the symptoms were now - vomiting black stuff - they raced with Dieter through St.Augustine to reach Flagler Hospital fast, the sirens going. I was driving directly behind them in our car. The sirens made my mind go blank, I felt nothing.....

It turned out to be a bowel obstruction, which doctors thought was connected to the high dose of Corticosteroids. Dieter spent overall 3 weeks in the Intensive Care Unit. Besides cleaning him out totally to be able to do surgery, the doctors were confronted with lung embolie, liver infarct and heart disturbances. They had to give him high doses of Heparin in order to stop the blood clots and this made his guts bleeding even worse. They implanted a Greenfield Filter into his vena cava to prevent the blood clots from ascending. Then they could operate. Dieter lost 22 inches of his small intestines. A crew of several doctors saved Dieter's life. Would have doctors in Arizona or elsewhere done the same good job? We will never know.

At one point in between, one doctor told me that the situation is serious and I should tell my relatives. I emailed our 3 children and they all came fast, also our son-in-law. Our second son was in Australia at that time and had to fly to Germany first and meet up with his brother. Dieter told them that he is fighting with all his strength and that he will survive. When the children had to leave after one week, that was not quite clear to everyone....Dieter was living only on some small ice chips for 3 weeks but he had the strength and the will to get better. One day while I was at his bedside, nurses run in, pushed me aside, looked at the machines and into his eyes and hit the button "Code Blue". Standing outside the circle of nurses and doctors and not being able to help somehow is the worst feeling...

He was released after 3 weeks into my care into the motorhome. He had to wear oxygen equipment and had to take lots of medication. We had a big oxygen generator under our little dining table and the long hose was leading into the bedroom, to his bed. I walked next to him when he walked daily outside, every day a little more.
Then a hurricane came into our area. The resort had to evacuate. I took the following picture of the angry Gulf of Mexico. Dieter never walked the beach that time nor did he see the beach.......

The oxygen company came to retrieve the equipment - and I was ready to drive our motorhome the first time. Dieter wanted to drive the first stretch....but he made it all the way to Bushnell, 135 miles all by himself. When we arrived there, he was "done".. The manager came and did all our connections. Other campers came and asked whether they could be of any help.

We made appointments in Tampa again. The oncologist insisted that Dieter had to finish his second chemo. He did and when we had a follow-up appointment and tests done, he told Dieter that the second chemo did not do a thing for him, he wanted to try a third.
He sat very near in front of Dieter and said: "Look me in the eye,
if you do not take the third chemo, you will die!"
"Good, then I die" my hubby answered.
I was ready to support all his decisions about this. And I was ready to help him fight that thing all by himself.
That was the last time he took anything against this sickness, besides the supplements I prescribed for Dieter and besides the blood thinner he had to take because of his implant.

After being back in Bushnell, another hurricane came and we had to drive north to Silver Springs. That was the time we decided to go west again, we had it with the hurricanes. When we told Dick and Myrt that we wanted to come to Arizona again, Dick said that we can rent our former lot for a very good price.
We had found out in the meantime that the prices for flights to Germany are the same, Phoenix or New York - no difference.

The picture below shows Dieter before we left Bushnell.

Dieter gained most of his strength back, slowly. He was even able to drive up to the home of Dick and Myrt in Wisconsin in spring 2006, where we stayed for some months. On our way back we visited our sister-in-law in Pennsylvania.
In Nov/Dec. 2006  we flew from Phoenix to Germany. We wanted to show our kids that their father had changed from a sceleton to his old self. We had a good time, but it was very strenuous for both of us.

We hoped that Dieter's kidneys would hold on -   and we still do. Even this topic is not important to Dieter. He was reading lately about mobile dialysis units and I just read that "in-center" dialysis has now overnight treatments, meaning, that the patient sleeps the night away and can go home in the morning with clean blood instead of living every third day in the hospital....

Many of my friends already know about this, but so many others do not. If any of my readers ever notice "foaming urine", that would be the first very noticeable symptom. Please, see a doctor then....

In the beginning of his sickness, Dieter lost every day 8 grams of protein through the kidneys.The first defense at that time in 2005 was a recommendation of a doctor in Bushnell to drink 2 big Whey Powder shakes per day to replenish the lost protein. This kind of protein can very easily be absorbed by the body. He still takes one in the morning. If anybody would be interested what supplement I found for him and what he still takes daily, please, contact me via a comment here.
According to the latest test, he loses only 1,8 gram per day these days. Big win - hurray!!
Even the latest blood tests did not show any significant deviation from normal.!

Whatever ails you, my friends, don't feel sorrow for yourself and don't be a couch potato.... and don't follow doctor's advises blindly. Research everything yourself and confer with your doctor over your findings. Stay as active as even manageable and live your life as "normal" as possible.

Happy New Year and my best wishes for Health and Happiness!  Karin.