April 26 2016 - No sleep

01:10
I'm wild awake. I went to bed around 23:00, but my good ( ?? ) leg was itching something terrible.
I have slight sensation in my phantom foot, but it isn't enough to keep me from sleep.

I wore the prosthesis most of yesterday. My good friend took me out to a new hamburger place for my birthday. Great burger.

------
The last few days have been spent playing a train game, or, reading a book called "Orthogonal". The two may not seem related, but they are.
My train game gives a random shaped land mass, with random placed towns, and random placed industries. I have to make train systems to supply all the towns with the different industries. The train networks get very complex. Using train signals to control the trains, is very similar to using computer network routers and switches to control the flow of network packets of data.

The book Orthogonal is about everyday practical uses of Orthogonal mathematics.
Orthogonal is when changes to one attribute does not change any other attribute. If we graph two Orthagonal values, the axis on a graph will be 90 degrees to each other.
For an example:
If X = 4, and Y = 3. On a graph, we go 4 units horizontal on the X axis, and up 3 units on the Y axis.
If you change only the X value, it will never change the Y value, and  if you change only the Y value, it will never change the X value.
X and Y are Orthogonal to each other.

If :
We make X equal to the length of a box.
and Orthogonal to that, (90 degrees on a graph),
we make Y equal to the height of a box,
and Orthogonal (90 degrees) to that,
we make Z equal to the width of a box,
and Orthogonal (90 degrees) to that,
we make W equal to the color of a box,
and Orthogonal ( 90 degrees) to that,
we make T equal to the weight of a box,
and so on, and so on.
Hmm.. I think I just heard your brain snap.
I am talking about many, many, dimensions.
As long as each attribute (dimension) of the box is Orthogonal (90 degrees on a graph) from all other attributes. A change of any one attribute, will not change any other attribute.
Changing the color of the box does not affect the length. Changing the height of the box does not affect the width.

I build my computer networks (and train networks) so that if any one part of the network fails, it will never affect any other part. I try to make as many different parts of my network, Orthogonal to each other.
In my train game, I have been designing train networks where each train, and it's route will never affect any other train or it's route.
 I currently have 19 trains running in my game. Here is what one small part of the game looks like.

Then I got bored.
----
02:30
I am trying to get off Lyrica.
I believe it has reduced the Phantom Pain, but it makes me lackadaisical, and stupid. The side effect of stopping the drug are substantial, and many people can't handle the withdrawal, and soon go back onto the drug.
I was taking 75 mg every morning, and 75 mg every evening.
I figured out that from a dose of 150 mg a day, it will take about 6 weeks for me to get completely off it.
Of course I am worried that as I stop the Lyrica, the PLP will come back again. Maybe even stronger.
If I have to chose between being able to think, or having pain, I will be in a lose/lose situation.

When I refilled my prescription, I asked for 25 mg capsules instead of 75 mg capsules. The pharmacist says that many people ask for the same, because they are trying to slowly get off Lyrica.

My plan is to reduce the daily dose by 25 mg every 4 days. I am allowing for some times needing to maintain the dose for 5, or even 6 days.
I am now down to 100 mg a day, and I am experiencing some of the withdrawal symptoms. My good leg skin is tender. The lower leg feels badly sunburned, and the skin is dry and cracking. My toes are almost 10 degrees cooler than my ankle.
About 30 minutes ago I took an unscheduled Lyrica, and I can already feel the sunburned, itchy feeling in my leg has reduced significantly. I will soon be back in bed.

Here is a picture of my foot.

Lyrica is evil.
Doctors that prescribe Lyrica are either stupid, misinformed, or the spawn of Satan.

--

April 24 2016 - Trip ( literally ) to the Mall

17:00
I'm just back from a walk to the mall. I am very sweaty and stinky. Be glad this is not a smell blog.

There are many malls within 4 km of my house. I walked to one that is about 2.5km from my house. At a Mall restaurant my GPS said 2.8km (1.74m). Total for the day was...Well here is my phone GPS display:

I never knew that Android phones can do screen shots. Just hold the power button and the volume-down buttons at the same time.

I live in a very nice neighborhood. I took this picture just down the street from where I live. Most of my walk to today's mall was on roads like this. That is one reason I like this particular mall.

When I was putting my leg on, my stump was very large, because I wore no compression on it yesterday. That means it does not fit far enough down into the socket. With just the silicone liner on, the leg was almost 3 inches (7cm) too long. That makes it very hard to walk. It feels more like a limp. Also the chance of catching the toe on the ground during the swing forward phase is much greater.
I put the leg on early, and waited for the stump to shrink. Walking forces the stump down into the socket very hard. In about an hour the leg was the right length, and I started walking to the mall.
About half way to the mall, the stump had shrunk enough, so the stump was bottoming out in the socket. Bottoming used to be very painful till I put some foam pads in the bottom. Now I get a warning that soon, it will be painful.
I stopped under a tree, and removed the leg. I put a special sock over the upper part of the stump. This makes the stump fatter so it doesn't fit so far down in the socket. At the mall, before I started back, I added another sock. I got home with the stump bottoming again. Any more walking now and I would need another sock.

Missing the left leg means that if I am walking where the ground is higher on the left, the foot has a bigger chance of catching on the ground during swing forward. If the ground is lower on my left, the I have extra room during the swing forward, and I feel safer.
In South Africa cars drive on the left, so I should be walking on the right side of the road so I can see on coming cars. But I feel safe walking with the road sloping down to the left to give more toe clearance.

About 500 meters before getting home, I heard a car behind me and looked over my shoulder. The leg didn't swing forward all the way, and I fell.
 Falling face first onto a curb sounds like bad news, so I walk a bit farther toward the center of the road. I'm sure I piss people off. A cripple walking about a meter from the curb in the same direction as the traffic. Many cars come very close to me. They are trying to make a point.
Today when I fell, I remembered to drop the cane so my fingers don't get trapped under it. I fell toward the curb, and ended up next to it. The car that scared me, slowed down and drove around me. So did the next 2 cars. Finally I got a traffic gap and managed to get up. White South Africans don't stop to help a cripple laying in the road. Even, if it is on the way back from Church.
I always wear motorcycle gloves when I walk. I sure needed them today.

Last night, as I was reading, a mouse ran across the kitchen floor. I don't even tolerate ants inside my house, now a mouse!
I like animals, but a mouse, in the house, is not going to be there for long. I searched all over for him, but he was hiding.
About 20 minutes later, I hear plastic rustling in the tool cupboard. I open the door and the mouse runs out of a small plastic bag and disappears into the cupboard junk. Trust me people. A mouse could hide in that cupboard for months with out being found.
 I grab the plastic bag to make sure the mouse doesn't eat any more of what ever was in there. It was Ratex rat poison.
The mouse was killing himself, and I saved him! I had the unique experience of feeling Arrrrggg!, and Duh! at the same time.
I set up motion detection cameras, and a mouse trap. I put in the trap for bait, bread, peanut butter, banana, and cheese. I wanted to see it die. I have a huge internal, emotional, conflict between my Buddhism philosophies, and the killing of things, that really should be dead.
This morning the mouse trap had sprung, and there was the mouse. A cute little thing. I was blessed with a karmic reprieve because the mouse was trapped by only its tail. I bravely put on my motorcycle gloves and got a huge bowl, and put the trap and mouse in the bowl. I then went outside to my fence, un-trapped the mouse, and threw it into my neighbors yard. It scampered away with it's newly bent tail.
I went inside to check the cameras to see just how a mouse gets only it's tail caught in a mouse trap. The mouse must have been to small too trigger the motion detection. No videos. :-(
--

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.
--
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.
--

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.
--

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.
--

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.

--

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.