April 23 2016 - Breaking the blog fast.

03:02
I am sure you are aware of what a three in the morning blog means...PLP.
I was in bed and sleepy by 22:00 and I slept very well till about 02:30.  I don't expect to get any more sleep tonight.
I am also sure that the PLP is getting less. It still rears it's head up from time to time, but the 24 hour average is definitely less. This bout seems to be the result of a long walk I did yesterday.

I have been convinced to try TENS ( Transcutaneous electrical nerve stimulation ). Maybe it can help with PLP. It is a small machine that supplies a small shock to the nerves to try to deaden them. Maybe if the stump nerves can be deadened, then the PLP will have no reason to be there. I will order a TENS unit tomorrow. It should be here by next week.

My Mauch knee started having some slop in the hydraulic piston. It was only there in one mode, but that mode made the risk of a fall much more likely. That knee has been sent to Iceland for repair, so I have a loaner knee. I was hoping the loaner knee would be a different type of knee, so I could try something new, but my loaner is another Mauch knee.

Yesterday I decided to do a long walk. I want to be able to walk to the closest mall and back, which is just over 5 km. I am not ready for that yet, but I did manage to walk 4.26 km around my neighborhood. My average walking speed is also getting faster. My average speed yesterday was 3.4 km/hr.

Maddie was visiting me for 2 weeks. She has now returned to her house down in George. Now I have to make my own meals, and do my own laundry. I don't know if it is fair to make me have to be responsible for folding my own socks.
We need to come up with a way to see more of each other. I very much like being with her.
Maddie is in car buying mode. She needs something like a small city car that can also do the occasional freeway trip. She is favoring a Toyota Yaris.

I am making my Lyrica and Cymgen (Cimbalta) doses gradually less. I am trying to kick both drugs over a 6 week period. Of course that is assuming the PLP reduction is not from those drugs. If the reduction of PLP is from the Lyrica or Cymgen, then I will have a life changing decision to make.
I will have to choose between a blurry, lackadaisical, sheep like life, or a pain filled life with a clear head.
Unfortunately, there is no option for short term PLP relief except by reducing consciousness.

My next house hold mission is to get an Arduino computer to listen to me talk, and to do what I tell it to do. I have always been interested in voice controlled  smart homes.

I started a new Science fiction book. It is about a world where Math doesn't work exactly the same as in our world. This means that physics also works different. So I will live in a strange world till the book is done.

April 13 2016 - Second PET Scan results

09:00
A slow morning. Nothing planned till my Oncologist appointment at 14:15.

I have looked closely at the PET scan pictures, and it all looks clean from a tumor point of view. Of course, I don't know anything about the subtleties of reading a PET scan.
The area of my stump end shows as bright yellow, which is indicative of inflammation and excessive blood flow, but I would expect that. I'll see what the Oncologist says.

15:30
We are back home from the Oncologist. She says I appear free of any active malignancy.

The conclusions on the reports say:
"There is no scintigraphic evidence of residual metabolically active malignancy on these images."
"No hypermetabolic activity in keeping with an active malignant process."
"No signs of local recurrence or distant metastases."

With respect to the possible damage from the chemo treatments:
"Bone marrow uptake appears fairly homogeneous throughout with no focal FDG avid lesions visualized."

So all is good news. Next time with the Oncologist will be in 3 months when I have another blood test, and see her again.

Here are some of the latest PET pictures. (The previous PET scan pictures can be seen on my Day 40 blog.)

You can see here the inflammation (shown by the yellow) on the end of the stump bone from wearing the prosthetic leg.




















Here is a picture of the legs showing no bad areas except end of the stump, and the ankle area of my right leg. This is caused by the Cymbalta causing cracked, dry skin, and swelling to my extremities.

This picture is cool because it shows the area in my mouth where I bit my tongue that morning. The PET scan interpreter said that the slight increased blood flow to both shoulders was probably caused by the use of crutches that day.
And for all my "friends"...I now have proof that my heart and brain are normal.
Maddie says it shows the absence of a brain, but then she ALSO doesn't know anything about the subtleties of reading a PET scan.

In this one you can see the missing lumbar disc between L4 and L5, and the skinny disc between L5 and L6. Also note the lack of yellow dots indicating tumors.

Because the radioactive chemical is absorbed by the brain, heart, and bladder wall, PET scans are seldom used to diagnose in those areas.
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Maddie's car got a bump (not her fault) and the bodyshop/panel beaters did not reconnect the hoses properly, so the engine overheated. The insurance has now said that the car is totaled, and will payout cash.
Now we are once again again car shopping.
Maddie has fallen in love with a 2006 Mercedes A170. The dealer is bringing it by tomorrow morning so she can drive it all around the neighborhood.
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April 11 2016 - Lyrica and NFC

19:00

Last night I couldn't sleep from about 1:30 till 08:30. Very bad Phantom pain (PLP). The pain got bad so I took 2 Tramacet at 05:00. Tramacet doesn't stop PLP, but it does knock me out. They take a few hours to start working. I slept from 08:30 till after 13:00.

If I google "Lyrica withdrawal side effects" I get about 500,000 hits. Trust me people, Lyrica and Cymgyn (Cybalta) are bad things. They are prescribed so often because Doctors are told they are less risky from a legal perspective than opiates.
There are SOOO many people trying to get off Lyrica and Cybalta. The withdrawal symptoms are terrible, and usually the normal side effects are often worse than the original disease.

If I miss a Lyrica or Cybbalta dose I get the jerks, tingling in my phantom leg, and can't sleep, OR can't stay awake. When things get bad, is when I sleep through the time to take a Lyrica, and the effects start to snowball. Lyrica is very sensitive to under, or over dosing. So taking a Lyrica 3 hours late, means I both under dose, then overdose. I get insomnia mixed with narcolepsy. Duh!!

It doesn't feel quite like narcolepsy. It is more like my brain just shuts down for about 15 minutes. Like a super strong nap attack. But it never quite feels like sleep. Sort of like the brain is deprived of oxygen, and ceases to work. I believe in my case it is neurological, and caused by Lyrica and or Cymgen.

I have spent a very large amount of time to try to figure a mental way to deal with an obvious mental problem. Today I had about 5 of the "nap attacks". My brain would be functioning very well, then within a few minutes, I would get stupid, start slurring my words, and then pass out for 10 - 15 minutes.

While I was in awake mode, the PLP was between bad and very bad. Talking or doing something busy was not as much relief as it had been in the past. I noticed that as I slipped from smart, to stupid, to comatose, My PLP would decrease, and disappear right before I passed out. On awaking the opposite happened. As I gradually became more awake, the pain increased.

I think the Lyrica/Cymgen combination does reduce the PLP. But at a tremendous price.
Do I want the hell of being stupid and fading out, or do I want the hell of pain.
It seem that either way is bad news for me.
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April 11 10:00

I slept well last night.
I called the PET scan place and asked if I can have a report of the scan. They say I have to see the doctor first, before they will give me the report. My doctor appointment is only for Wednesday afternoon.

So maybe today, I will walk to the mall. Maddie can drive there and we can have lunch. The mall is about 2.5 km away. I should be able to walk that. The road to the mall is a slight downhill. It would be easier for me to walk back home from the mall. Uphills are harder from an energy point of view, but easier from a prosthetic point of view.

The washing machine and Maddie are currently having a conversation. They are bleating at each other.

My buddy gave me some NFC tags. Some are thin like a small band aid. Some are like a key chain. One is smaller than a little finger nail.

If a tag is held very close to my phone, the information on the tag is inputted into my phone. This is the same technology that is used in a passport, and new credit cards. My phone tries to read a passport, but fails. I think the passport is encrypted, or else it is some proprietary protocol.
A friend uses them to change the settings on his phone. He puts a programmed tag in his car, so when he gets into the car, his phone knows to turn on blue tooth, and turn the GPS on. He has another tag near his bed, so when he goes to bed the phone knows to go to silent mode.
They are a wonderful solution to a problem that I have yet to find.
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April 9 2016 - Pretoria Botanical Garden

April 10 2016
03:04
As I'm sure you can guess from the time, that PLP has me in it's grip.
We went to bed at about 23:00, and I slept very well till about 1:30 when I got up to pee. As I laid back down the PLP started. Finally at 2:30 I just got up, and moved to the other room, so hopefully Maddie won't be disturbed.

Yesterday (Saturday) we went to the Pretoria Botanical Garden. Very large and well done.
We both really enjoyed walking through the gardens.

My prosthesis is now at a weird stage, where it shrinks very fast during the day. I start the day with just the silicone liner, and soon the socket is to loose. I have to take the leg off, and put a wool sock over the liner to make it bigger to fill the socket, then put the leg back on. On some days I will keep adding socks through out the day. A few days ago, I needed three socks to thicken the stump enough to be able to use the leg.
The socks are special and expensive.

I carry a bag with all my special leg tools in it. I always carry a small spray bottle with a glycerin, alcohol mix to lubricate the leg as I put it on over the stump. I also carry spare socks, a small towel, an allen wrench set, and a tool for adjusting hydraulic movements on the leg.

At the gate to get in the Garden we had to pay. I convinced the cashier that not only was I disabled, but also a pensioner. If I was also a student, they would have had to pay "me" at the gate.

There were many things going on in the garden. three separate weddings, many family picnics, and a few kids parties. We seemed to be the only people there to just look at the gardens.

All throughout the garden were large metal sculptures of different insects. Each was about 2 meters (6 feet) long. Very well done. Here is a mosquito.

They had a special display of ways to save water in a garden. Ways like water tanks, and using mulch.
They also showed many ways of gardening with succulents. Here is one small attractive garden.

They had a display of tricks for disabled people to garden easier. The caption for all the pictures was also done in braille. I wonder if that just explained the picture, or was for the blind people as they looked at the pictures.

Here is Maddie in a posed picture.

And me sitting in the branch of a nice tree.

I got real good exercise walking on the grass. Uneven ground is a challenge. 

Often I would rest on a bench and Maddie would zoom off to take pictures of boring plants.

We stopped at one of the cafes for some coffee and a muffin.

Here is spy Maddie trying to take a secret picture of me at the restaurant. Me taking her picture, must mean I am a counter spy.

At the cafe was a great tree. We both thought it needed it's picture taken.

While walking we passed a flock of Guinea Fowl. A minute later we came across a single male making noise. It looked like he had lost the flock He would stop and make a funny squeak, then look around and listen.

I don't think he was impressed by me being in his way.

We stayed at the Garden for about 4 hours, and I walked about 2 km.

I hope this staying awake doesn't spoil our Sunday plans.

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April 6 2016 - Drive up from George, and PET scan.

14:00
Today is a lazy day. No exercise allowed before the PET scan tomorrow morning.
It turns out I am very good at doing "no exercise".

On Monday the 4th of April, Maddie and I drove from George to my house in Pretoria. 1225 kilometers. (761 Miles).
We left George at 06:30 and arrived home at 21:30. 15 hours. We stopped for fuel 4 times, and had a big lunch.
The night before we left, I had bad PLP and slept little. We were worried I may want to sleep all the way. It turned out that twice I faded, and needed a nap. Maddie drove both times, while I slept. She ended up driving about 1/4 of the way.

We saw a funny shaped dam. It looked like it was made of huge beer cans.

Front of dam wall

Rear of dam wall

Then we saw some cool trees. They are like bonsai trees. The tallest ones had the bottom of the leaves about sheep or goat high. Good sun shields for the sheep and goats.

We stopped and gawked at some yucca plants that were HUGE. The stems grow 5 meters high, and they are about the size of my upper arm at the base. Not good walking sticks, but they might make good telephone poles. The farmers use them as fences for sheep.

Tomorrow is PET scan day.
As before, the pet scan has a long list of what you can and can't do before the scan. Today, I am on a zero carb diet.

April 7 2016
23:00
I had my PET scan today. I got all the pictures and the CD with all the scans. The official results are only going to be available next Monday.
We looked at the pictures. They print out the most relevant ones. The radioactive chemical they inject into me collects in areas of large capillary veins. Usually where tumors are.
My pics show that my brain has good blood flow, as does my dick, and my heart. Some men think with their dicks, and some think with their hearts, and some with their heads. I guess I think with all three.
Maddie and I see nothing that resembles the tumors that were in the last PET scan. But PET scans are very tricky, and there are many false conclusions possible. So we will wait for the expert report.

April 1 2016 - Long day trip

12:00
On the 28th of March, Maddie and I did a long day trip to many surrounding towns near George.
We drove just over 430 kms (260 miles). We started at 08:00 and got back home at 19:30. I wore the leg the whole day. By the time we got home, I really wanted that leg off.

Our route followed R62. It follows between the Langeberg and Swartberg mountains. That long thin valley is called the "Klein Karoo".

We started by heading north through the Outeniqua pass to Oudtshoorn. Ostrich capital of the world. We tried to get pictures of ostriches. They were shy that day. Here is a picture of Maddie getting ready to sneak up on some, and here is a picture of them running away from Maddie.

A great picture of 8 Ostrich asses.

We then drove to a small town called De Hoop. It wasn't even on the map.  Many farmers around the turn of the century would get together and build a big church to serve all the farmers in the area. 

Huge church in a town with population 31. The clocks even had the right time.

Often a small town would grow around the isolated church. 

De Hoop soon got a railway through it. 

I wanted to steal this railroad sign.

The next town we visited was Calitzdorp. It was established 1821 and currently has a population of 4300. Calitzdorp is a very arty, crafty town. It felt like a hippy town. And as usual, it is built around a big church.

At one time in the early 1800's, within the British realm, the determining factor of whether a settlement was a town or a city, was whether or not, it had a Cathedral. The small settlement of George had a Cathedral, and at one time, George was the smallest "city" in the world.

We then passed through the towns of Zoar, and Ladismith. 

 Ladismith Church, from 1874. (We did not take this picture.)

To the north most of the day was the Swartberg mountains.

And to the South was the Langeberg mountains.

Soon we arrived at the wonderful town of Barrydale.

We stopped for lunch. 

Note the dainty little finger. :-)

Barrydale's claim to fame is the fact that it has the Fynbos ecosystem to the South and the Klein Karoo to the North. These two ecosystems are about 10 kilometers apart, with Barrydale in between.

Barrydale is also the start of the Tradouw Pass through the Langeberg mountains. 

When we did motorcycle tours, The Tradouw Pass was one of the motorcycling highlights. 17 kilometers of tight, twisty, canyon road. 

After the pass, we were now between the Langeberg mountains and the ocean.

We approached the small town of Heidleberg. Of course there was a church.

We both were tired, so we got on the freeway and just went straight back to George.

I had been wearing the leg for 12 hours now, and the stump had shrunk so much it was very hard to walk. The stump was bottoming out in the socket. Back at the house, I took off the leg.

On freeing the stump, the blood rushed in and PLP was there very strong. I quickly washed the stump, and put on a nylon shrink stocking, and took anti-inflamatories. Trying to keep the swelling contained. 

We were both very tired, and bed called early. I was battling with PLP.  I drugged up and waited. I sat in the kitchen and watched CNN and read my book. 

At about 2 in the morning, I SMSed my Texas buddy. He then called me, and we had a wonderful chat for 1hr42min. Having a chat with him, helped take my mind off the PLP. Finally I headed for bed at a bit after 4 in the morning. Awake 22 hours.

At about 6:30 I woke to pee, and got a rush of PLP... really strong. I was not able to reduce it by action or keeping busy.

The best thing for me to do, was drugs, wait, nap,...drugs, wait, nap,......(rinse and repeat). The next 48 hours were a blur.

Now I am sort of recovering. Even with the compression stocking on for 2 days, the stump is swollen.

 This pain and drugs life, is just not sustainable.

A teaspoon of pleasure, for a bucket of pain.

I need to try to get the silicon liner on the stump, and maybe go for a short walk. 

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Mar 27 2016 - Walk in the Botanical Garden

17:30
Finally something to write about. Nothing exciting, but not "nothing" either.

This morning Vicky (Maddie's granddaughter) left to go back to Stellenboch University. I sure hope she can stick to her studies of Math and Physics, and not change her major to boys.

Maddie and I decided to go to the Botanical gardens for some exercise. Last weekend Maddie did the 5km (3.10 mile) George park run through the Gardens. Here is proof....

Notice the thousand yard stare of an exhausted athlete.

I told about Maddie showing me the hard part of the run through the woods. Today we stayed on the easy part of the run.
The weather was cool, windy, and beautiful skies.  We appealed to the gate guard to let the poor, helpless, cripple, park his car inside the Botanical Garden. Inside the Garden are two large grassy plains, and a hill that is called the labyrinth. We parked in the one big grassy field.
The labyrinth is a 10 meter high hill with a spiral path leading up to the top, and another spiral path leading down. The paths never cross, so you never meet anyone on the path.

Here is a Google map of the Labyrinth Spiral and the one big field.

Maddie zoomed off to get her exercise, and I started walking with my cane, crutches, and Maddie's walking sticks. I needed to learn slope walking, and uneven ground walking.
First I walked the length of the grassy field a few times with the walking sticks. They are better than the cane for walking fast on uneven ground.
 My prosthesis is designed to lock the knee when weight is on the heel, and to unlock the knee when weight is put on the toe.
When walking on uneven ground, one step may have a clump of earth under the heel, so the knee will never get weight on the toe to unlock the knee. So just when you need to swing the leg forward, it won't swing forward because the leg is stiff, and doesn't leave the ground. The opposite is true if there is a clump of dirt under the toe. As soon as you put any weight on the foot, the knee unlocks, and the leg collapses. After quite a bit of walking I figured out that taking LARGE steps greatly increases the angle of the prosthesis foot on the ground, which greatly increases the knee breaking loose if something is under the heel, and helping hold the leg stiff if something is under the toe.

I then went to the Labyrinth, and practiced walking up slopes, and down slopes. I used a walking stick in my right hand, and the cane in my left hand. Once again I found large steps to be a big help for up slopes.
If the down slope is steep, I found that a method similar to going down stairs works best. First put the prosthetic foot down in front, then because the weight is on the heel, I must use LOTS of force to move my stump forward to break the knee loose so it collapses. (OH NO...I'm going to die.) then quickly move my good leg to prevent me falling on my face. It feels very much like I save my life every step.
 Then I got a bright idea. What if the leg never locked? So I changed the settings so the leg was floppy. It just would swing free. The only thing to keep it straight was to snap it forward, then hold it against the ground with strong back pressure. If the back pressure was released, the knee collapsed.
Now I had no problem getting the knee to break and bend. This allowed controlled collapsing.
 I did 2 more up and down the Labyrinth.

 The view from the top was fantastic.

A couple at the top took a picture of Maddie and I.

Here is a panorama of the view from the top.

I walked fast with the knee loose back and forth the length of the big field, then with Maddie close by, I "fell" and got up by myself twice.

Then home for a welcome shower, and a movie. "Now you see me".
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