Barbie's Blog

Made it to October. The days are really getting shorter... it's dark now by 7pm. That's sad. I really like sunlight. Now, will we make a trip to the USA in winter? That is already in our thoughts. Can't yet say if we will or what.

We've been out trying to do more bike exercise by taking longer trips. The weekends have been very nice surprisingly (usually the clouds roll in when you have those precious days off from work). This past weekend we were lazy and spent Sunday afternoon in the Old Town of Heidelberg and the Marktplatz sipping a beer and watching the tourists.  

The weather has changed. We made a trip to the Bodensee the last weekend in August and although the daytime weather was perfectly warm there was a change in the feel of that warmth. The evenings were chilled and camping through the night so close to water made it difficult to stay warm. We enjoyed ourselves in spite of the cool evenings, drinking wine late into the night and having 'serious' discussions with our guest, largely driven by the effects of the wine.

The following week, which included the first of September, the change became more evident. Just a certain smell in the air, you know? The days were and are still warm but as evening approaches you can feel that tinge of new air coming.

We took a long ride through the local forests, patches of woods that surround this area of Heidelberg south towards Karlsruhe and the woods smelled of the tannens of the fallen leaves already carpeting the floor of the forest. Temperatures stayed in the low 70's and it was too cool for us to take a swim in the little 'baggersee' we visited. (water-filled exgavations from companies harvesting the gravel. These baggersees are clear clean water from the springs and have been returned to the local towns for recreational use)

Overall it was a good day and my muscles felt good after the workout.

There are other changes coming too. These may not materialize for another few months but they must come. Decision time is approaching.

And winter is on my mind. Here it is so dark and the cold is beginning to cut into not just my bones but into my mind. I must be getting old finally.

The OUTDOOR SHOW in Friedrichshafen, Germany is one of the biggest exhibitions of new camping gear in all of Europe. We had planned our first camping trip around this event, partially because we love camping and partially because it was the weekend of my birthday. What better reason to try out our new tent, purchased in October 2007 and never got to use in 2008 because of Bernd's illness.

Friday, 17 July I left work early so we could catch the early 2:10 train which would then arrive in Friedrichshafen at 6:30. The plan was to have a nice birthday dinner in this lovely little harbor town on the border of Germany and Austria then bike the 10 kilometers to the hugh exhibition center where the campsite was. Checking the weather just before I left, there were pridictions of 'periods of rain' in the area.

After 4 hours on the train and the clouds building in the skies, it began to rain. As we pulled into the station the skies opened up and disgorged a flood. We stood on the plateform of the station in a disheartened state of mind and I almost seriously considered turning around and boarding the next train back to Heidelberg. We waited and watched the rain with high winds coming from the big lake, the Bodensee (Lake Constance). Loud techno music was coming in on that wind and we discovered there was a large festival even with this rain! So we steadied ourselves and made our way to the harbor and to the little Thai restaurant we knew of. We were WET! Even with rain gear and plastic wrapped around our camping gear, we were WET.

Dinner was great.

The rain had slowed to a lite drizzle and we proceeded out to the Exhibition halls. As we approached the large parking areas the rain increased and by the time we made it around to the backside of the halls where the camp grounds were it was once again a flood of rain pouring from the sky. We headed for the East Entrance portico where it was at least dry. We dismounted and were able to go into the foyer of the entrance to use the restrooms to dry off. This helped us to feel a bit more relaxed for some concentrated thinking. We really did NOT want to set up camp in this! What to do?

I pointed to 2 large event style tents sitting in the parking lot area. You know the type, they are heavy material with plasic windows and these were really large and long. I wanted to see what was inside these tents thinking, well.... if not just for a few hours we could hang out there?

Inside these tents were large packing crates storing products of the various vendors of the show. They were nearly full however there was enough room for our tent. It was nearly 9pm and day was dimming. We both agreed, no one would throw us out of here in this kind of weather. This was the logical spot to stay and we set up our tent... a 'self-standing' tent. We were dry and happy and reasonably warm too given the winds. Our only difficultie was the noise of the driving rain on the tent roof. The sound echoed in the vastness of this tent and lasted all night. Ten hours of rain!

I have included a few pictures of our tent site, the best one in the entire campground area. We stayed the 2 nights were there and no one bothered us!

In the "good old days" when you made a reservation for air travel all you had to do was reserve your seat, be there on time and fly. After the tragedy of the World Trade Center (now known as 9/11) security became an issue and you had to be prepared to have yourself and your bags searched. The airlines got hit (cash flow) hard as people panicked and flew less for about a year. Then came the sky-rocketing oil prices and fuel costs took a bite out of the airline executive's bonus amounts. So they became creative and started adding on little charges wherever they could to maximize $$$. Let's charge for a second bag.  Then, when they found that people accepted that little charge they said, let's charge for all your bags, more as you had more bags. That caused the carry-on bag circus where people began taking large bags on board and trying to force them into overhead areas. (that created some nasty issues for the FAs) Charges for food, charges for drinks - even water. (that one didn't go over too well for US Airways and they dropped it) Charges for a pillow and blanket, charges for a 'better seat' (all that got you was a seat closer to the front of the aircaft, not more room) They are charging you if you want a paper ticket rather then the electronic ticket.
So what is my point? Well, now you will see more and more books and other information sources on 'how to fly cheaper' and it is a study in how the airline industry has tacked on charge after charge.
My thought for the day is, this leaves open the new great marketing idea for some small, up-and-coming airline to begin offering 'free' baggage' or 'free snacks' or 'free smiles' while you are on board. I experienced some of this on Jet Blue where their in flight service included some very nice 'free' snacks, free movies and TV at your seat, more room than any other Legacy Carrier (those airlines that have been around for longer then a few years) and no charge if you checked one bag. Yes, our free market system might work to the traveler's advantage if some enterprising company spots this opportunity. Sure hope it is soon cause I, as an airline traveler, am tired of being taken advantage of.

Seven weeks have past much too fast (you've heard THAT before). The weather was nearly perfect and we got in a lot of beach time. I needed this time in the sun. My reserves of the sunshine vitamin had run out and I needed a recharge.

The slide show I have linked here says it all. The sun, the beaches, the clear waters of aqua blue are all recorded with my camera. The only thing I cannot record is the breeze from the ocean, the smell of the fresh salt air and the sound of the sea gulls. Those things are locked in my mind to be retrieved when I need them on some rainy day.

Now I am beginning to get my head in order for the return trip. I will gather my thoughts for the airport 'sport' that includes getting through security and getting to the boarding gate at each stop. We fly out of West Palm, into Charlotte NC, then another flight to Philly, PA. Then on to Frankfurt. At each airport there is just over an hour layover and I hope I will have enough time to get Bernd a wheel chair or one of those electric carts to the next gate.

Bernd's health is still not good, his balance is terrible and he still tires easily. But he has rested and his episodes of stress have been less. When we return home to Heidelberg we shall see if all this rest has improved his ability to concentrate and handle being alone for the hours I work.

And I will miss this fantastic weather. My mind is filled with memories.

In August I made reservations for me and Bernd to fly to the USA in January. That didn't happen. Surgery did.

With help from FlyerTalk (I posted my experiences a few weeks ago) I was able to change our plans to February. The day is fast approaching.

On 17 February WE ARE OUTA HERE! We leave winter, hospitals, doctors and these four walls behind. Change of scenery ... yeah, that's what we need. I hope warmer weather will be in the list of changes too. Florida has not had much luck over the past few weeks with temps in the upper 20's for some nighttime lows. That rivals what we have here in Heidelberg, for gosh sakes. But my father assures me that the middle of February is always warm and the online weather services I have visited have given me hope with predictions of upper 70s and low 80s. Now that is exactly what we need.

Bernd has become so sensitive to cold that even the slightest puff of cool air makes a big difference to him. He feels trapped here. He wants to get out, to walk, knowing that the exercise would do him good. He is experiencing 'cabin fever' in the worst way. He is not very good at handling depressive situations and even the normal person gets those winter blahs or blues or whatever one calls it.

I work four more days then Friday we go to the clinic to have several more examinations, one by the neurophychiatric department and the other with the neurooncology department. I would assume at that time final adjustments to medications will be made. This will give me a few days to round up whatever meds will be needed and then Tuesday we will make our way to Frankfurt to fly out to the USA on that big A330.

I have ordered a wheelchair for Bernd. His balance and ability to walk long distances still suffers and he cannot negociate stairs well. Also the queston of thrombosis (that pooling of the blood in the body when one sits for long periods of time in one position) has been on my mind. I may have to carry with me suringes of a special medication which I will have to administer. We shall see how I have to get through security with this.

My only other concern for Bernd is, how he will handle jet lag.

I am keeping a mostly positive outlook on this. We have seven weeks there in the warmth of Florida with a one week visit to a friend in Vermont
The healing powers of sun must do their work. We need to restore ourselves.

I got a up-close-and-personal look at the German health care system. It is very much like the American system when you are sitting in the emergency waiting room. Here they call it Ambulaz which in German means Outpatient clinic. I had to wait for 2 hours to see a doctor but I am getting ahead of myself.

What happened to Barbie and her bike?

Icy roads. The morning was clear and cold with a fine film of ice on the roads and the sidewalks. German roads were in pretty good condition. The city workers had spread deicing material and the going was OK for me and my bike. I entered the military shopping center where I work and proceeded to the building where I work. I was less than 30 feet from the employee entrance and as I made my turn on my bike, the back wheel went in the other direction. In a split second I was slammed into the ground. My right chest and my right hand hit the pavement full force and I was instantly in pain. People I had previously greeted as I road past heard my cries of pain and came to my aid. Emergency service was called and I was taken care of very efficiently. My hand hurt like H**L and that is the only reason I let them take me to hospital. It was in my mind that it could be broken. It was not but now my arthritis in that hand has increased and it is stiff every morning.
My bike did not suffer any damage, thankfully ... it is my only form of transportation so I really need it!

Now the fight begins. Am I covered by Workmen's Comprehensive? I was going to work, withing 3 minutes and 30 feet of my work place but not yet "on the clock". I can't find any information on that on the web. Is the military responsible for not maintaining the roads? My employer is filing the papers, I am waiting for the German doctor who treated me to return the form that is necessary for the claim. Notheless, if I do get a bill from the German system it could be much less expensive then the American emergency care costs. Bernd had an emergencey care with an emergency vehicle ride to hospital and that bill came in at 153 Euros.

That is my adventure for the day. I have several bruses and this sore hand but the helmet saved me from having road rash and/or a concussion. My head slammed the road as much as my chest and hand did. Helmets work!

Off to work... hope the sun is shining where you are. 

January 15, Thursday, Bernd entered the Urology Clinic, part of the University of Heidelberg Medical Center. His anxiety attacks were at a high point and as the doctor made a last examination, explaining the dangers of the surgery, Bernd was a nervous wreck. Sometimes I think the doctors dwell too much on the negative aspects of operative procedures in an effort to prevent legal problems later. I tried to 'read between the lines' during the speech this doctor gave and ask questions that would direct her more to the results of the operation. I doubt that Bernd heard her more positive answers as he was still dwelling on all the parts of "you may need dialysis' or 'there may be some nerve damage that will result in a large lump on your side which could be permanent'. We got through  that.

Now Bernd settled into the hospital room where we spent the next 13 hours. I was allowed to spend the night with him, sleeping in a 'Grandfather chair' pressed up against his bed. We held hands through the night and in the early morning hours he was calm. I dressed him in his hospital issued gown and the 'embolism' stockings. A little green 'shower cap' topped off the outfit. I walked along side his bed as he was taken to pre-PO and then gave him a kiss.

Then next 10 hours I spent trying to ward off stressful thoughts.

I went back to the hospital at 1pm but was told that he would be in recovery until 6 or 7. That alarmed me a bit. Why so long unless there were complications? No anwsers could be had from the nurses station and the doctor I did find said  he was not a member of the surgical team but 'the operation went well, there was very little blood and the test results of the tumor will not be back for 5 to 7 days'. Well, that was a 'pat' answer if I ever heard one but I had to accept that. I returned at 5pm and found that Bernd was no longer in recovery. According to the nursing station he had been move to Intermediate care. But those in that department could not find him. I refused to move from their department and they began to call around. He had been moved to Intensive Care. It was explained to me that he would spend the night there. No word as to whether this was because of any complication or extra precaution. Everyone was very non commital. I went to the Intensive Care and waited for visiting hours at 7:30.

Bernd was awake and seemed comfortable. His vital signs looked OK. This room was filled with other patients. It was a large open area, a 'parking lot' for hospital beds docked into slots with tubes and wires, supply racks of latex gloves, syringes, gauze packets and other do-dads of medical needs. There were many attendants milling around like bees in a hive tending the 'larve' in their charge. I stayed the hour and went home. I slept fitfully.

Saturday I found Bernd in a new and better room (we had been in a single little room at check-in ... good for spending the night) Bernd was reasonably awake though still under the influence of either anesthesia or of other pain management drugs. He slipped in and out of fitful sleep, as if he was fighting the sleep. His eyes were constantly squeezing shut, his tongue and mouth working as if he were chewing. He had 2 IVs attached and 2 tubes coming from him. One a catheter with urine of an dark amber color and the other a drain tube with bright red blood draining from the wound in his left side.

He needed some 'pain management' during the day but only asked for something once. When his dinner came it was soft foods, milk rice, soup, some pudding and some fruit, pears in cubes. I woke him and asked if he wanted to eat. At first he was not interested so I used the old trick of eating some first and saying "mmmm this is good" At that he asked to taste. Bernd likes milk rice and he ate most of the bowl full. Soup he was not interested in. I saved the strawberry pudding and the fruit for later. At least he had some appetite and ate a bit.

I stayed in his room till 7:30 that night then left after his last medications started to kick in. I knew he would be bedded down for the night.

On Sunday I came a bit late, 10:30am. Oh was he mad when I walked in. He scowled at me. He was expecting me at 8am! He wanted me to be there for when the doctors made their rounds. Ah I was in the 'dog house'. He loosened up as the day went on. He was divested of his drain tube ( a good 10 inches of that tube was up inside his left side!) and all IVs were removed. The nurse said he could take a shower and wanted him to get up and move out of the bed so she could change the sheets. He was very willing to get up, wanted to get up and that was a good sign. He was, of course, shaky but we made our way to the shower where I had him sit and gave him what amounted to a sponge bath. We couldn't get the dressing on his wound wet, and he was still wearing these embolism stockings. But I got him cleaned up pretty good, washed all the 'major' areas, gave him a fresh hospital gown and walked him back to a nice clean bed. He looked comfy.
With all the medications he takes three times a day he stays a bit groggy but he is able to carry on a conversation. He still has a very bad memory and his aggressive behavior is still present. I am looking for signs that this encephalitis is abating. Only the smallest glimmer of change have I notice. One is that he has stopped having cold feeling feet. At the last weeks before this OP he said his feet felt like 'blocks of ice' yet his feet were warm. He wasn't responding to 'ticklish feet' when I ran my fingers over the soles of his feet. But now his feet feel warm to him and when I try to massage his feet he tells me to not press so hard. OK, that is a small difference but it IS a difference. More time must go by before I can see other differences.

Monday he was even more aware but resting. He wanted to get dressed and I realized that he had no catheter. He was free of all tubes. He wanted his normal clothes on. He even wanted to get up and take a ride around the hospital. Still, his memory has not shown much improvement that I can notice but I am trying not to rush things.

We await the results of the lab on what this tumor is, exactly. Then we can make plans on what is the next step.

For now our only plans in the distant future is to fly out on 17 February and stay in the warm and colorful land of Florida for the remainder of the winter. Not an unpleasant prospect. 

I thank US Airways for being so kind and understanding when I contacted them about rebooking our flight. When I knew Bernd was to have this new operation I sent US Airways a copy of the hospital report and they put me in touch with an agent here in Germany that gave me great service. I also thank a special group called FFOCUS that helped put me in contact with the "right people".  This group is promenent in the FlyerTalk frequent flyer forum which I supscribe to. This is wonderfully knowledgeable forum that is a wealth of traveling information by and for travelers. Without these people I would very likely have had a long battle to get to the right person. These groupes ... and especially FFOCUS, made it easy.

It is the Day of Reckoning.

Bernd will enter the hospital on Thursday and Friday, 16 January he will have the suspected cancerous tumor on his left kidney removed.

I have researched and researched and researched, searching for information that will tell me what his chances are for recovery. This is such a rare disease that there is very little case history in which to gather this sort of information. Near as I can discern, in most cases the cause of cancer is not found which makes it impossible for the patient to recover. If the cause is found, then it depends on the levels of which the encephalitis has destroyed portions of the brain surface.

The team at the Neuroonkolgie department of the Universitätsklinikum Heidelberg have been great.

Home for the holidays.
Yes, the doctors felt Bernd needed to be out of the hospital while the holidays were in full swing here in Deutschland. Only those with absolute need to be in hospital are there.
He is better though you will not get that opinion from him. He is still having anxiety and weakness, memory loss and difficulty with things that need concentration. He still has no interest in computers, business or sports (biking, travels). He sits in his big chair most of the day and 'thinks'. That aint good cause he keeps thinking bad thoughts. Like 'life is over' or 'I am a broken man' or ' I have no future'. Depressive thoughts.

I try to remain positive but can no longer discuss with him what the next medical step is. He will need to have the tumor on his kidney removed. That is an absolute. The PET scans showed no other possible cause of this paraneoplastic, limbic encephalitis but that little tumor. He is so afraid that another operation will cause further, more intensive problems (I will be a near-dead man!) that to discuss any part of this drives him to tears. What can be done?

His doctors have planned an operation date of mid January and a consultation with the specialist who will perform the operation on the day before that date. Thoughts are, if the specialist can convince him of the true need and the relative safety of this operation (we all know NO operation is safe) then if he approves of the operation he will have it before he can change his mind.

I have faith in this medical team. I do. I feel they have used all the resources, the vast resources and  have been on the right path.  We are in the right community, Heidelberg Medical University Center. 

I have faith in this intelligence.

Merry Christmas to all. I say this even to those who may not subscribe to the doctrines that have created this day. Let the tenet of "Peace on Earth, Good will towards All Mankind" be a part of our hearts for the coming year.

And thank you ...  to All my friends.

Bernd is home ... for a few weeks ... but he is home. I have a drug store's worth of medications that have followed him. [on a side note, all these medications DO cost money here in Germany. The false impression most Americans have about 'socialized medicine' is one of 'free' health care. It aint so. But the cost was considerably lower than in the states and none of this 'co pay' crap which is different for each American insurance company. Germans purchase insurance and then all medications are priced at a standardized price regulated by the health department of Germany.]

The encephalitis - that swelling of the temporal lobe of his brain- is apparently under control. In four weeks there will be a follow-up lumbar puncture to test the spinal fluid for any more signs of brain cells. If none are found then the cortisone treatment was a success.

I do not know how much the brain will recover in lost cognitive and memory functions. Once this inflammation is under control these areas will be the next to be considered. And then the next situation will be addressed. Another small mass was detected on Bernd's kidney. This was found back in July and the second CT scan showed that this small mass had not increased in size. But one thing at a time.

We have 9 weeks until our trip to the USA begins. Nine weeks... to see if he can get healthy enough to be without his German health care for the 9 weeks we will be in the states. Yes, one thing at a time.

Bernd was finally released from the psychiatric clinic and sent to the Heidelberg University medical center for the head (Kopfkinik). It is my belief that the doctor in the psychiatric clinic did see that this was not a dementia but an organic cause. Bernd was transported on November 11. I felt and still feel very good about this. He is now in the right place.
The team of doctors in the Neurooncologie wing immediately scheduled CAT scan, CT scan, EEG and a lumbar puncture. All test but the lumbar puncture were negative. The lumbar puncture revealed an inflammation of the brain, Encephalitis. Over this past week Bernd has been treated with infusions of Cortisone and slowly, steadily he has become more coherent .. more like himself. He is weak, he is slow of speech because of the medications and sedations but with the reduction of this inflammation he is showing improvements. The tests so far have not revealed the cause of this inflammation. It could be a complicated reaction to the cancer he had. Specialized tests were sent out to a special lab in Cologne and it will be next week before results are in. The reason for the inflammation must be found or it may reoccur. Cortisone only reduces swelling, it is not a cure.
So, we are not in a safe place yet but I feel better that he is at this clinic with the best of the German medical system at our disposal.
More to come.....

Bernd hates being confined to this clinic. He wants to check out but the doctors are very stern with him. If he does check out without their clearance then he cannot be re-admitted nor will he be able to go to another clinic. Unless they transfer him to another clinic, he cannot just leave. But truly ... he needs to stay and let the system work for him.

He seems to be getting worse, to me at least. Perhaps it is the influence of the other patients. Many are in various stages of dementia or other psychological difficulties and Bernd tends to be very sensitive to external influences. I spoke to his doctor at length and told her of my suspicions about anesthesia being the culprit here. She seemed at least open to the idea but still a bit incredulous about it as most doctors I have spoken with have been.  She wants to keep him there in the clinic for an additional 4 weeks! His hand tremors continue, his memory is terrible, so much so that he cannot remember his PIN to turn on his cell phone. He is bored. He lies in bed all day. I asked the doctor if he could have some sort of cognitive therapy and she is going to set up Ergotherapy for him. This is a way of getting his mind working again, solving puzzles, word games and the like. I hope he will co operate, at least it will be of some value to his condition and it will give him something to do.

I continue to do research and stumbled upon the idea of 'postoperative cognitive dysfunction' - POCD - while reading a passage on page 376 from "Complications of Anesthesiology" by Emilio B. Lobato, Nikolaus Gravenstein and Robert R. Kirby. This is a largely unexplored medical condition however it is becoming more in the forefront as more people report difficulties after surgery. I think this is exactly what Bernd is experiencing. He has all the listed symptoms and difficulties. The good news (if there can be any good news from this horrible debilitation) is that given the level of Bernd's educational background and his mental activity right up to the days before surgery, he has a good chance of full recovery. The bad news is, this could take more time .... these papers I have read seem to place the time-frame at three months. Bernd's surgery was just over three months ago and as I said, he seems to be getting worse not better. Can it be because of his surroundings?
He is currently taking 5mg of Oxazepam (for anxiety) four times a day (which seems to induce some hallucinations in my opinion). He is also taking a salt pill (his Natrium levels have always been low), an iron supplement and a thyroid medication.  I am not too happy about the Oxazepam as it is an addictive drug but the doctor insists that he must allow this drug to get into his system to show some results. OK, so I am giving it some time but I do not want Bernd to become dependent of any drugs if possible.

This is the latest update.

And I am so stressed, I am doing all I can to 'zone out' when I can. I have taken to reading mystery books again and I read every night to escape my own stress. That and sip some wine of course.