July 9 2016 - A beautiful cold day.

10:00 Saturday Morning...

I am not made for the cold. It is 12C (53F) inside my house.

Three and a half weeks ago my stump hurt itself inside. I have been in a wheel chair since. Some times braving the use of crutches for shopping.
The injury fits all the symptoms of a muscle from the amputation having healed to the femur, that suddenly tore away from the bone. The result is similar to a torn muscle.
Now over 3 weeks later it is healing, and I have less pain, but I still can not get the silicone liner on the stump. And my current prosthetic leg socket requires that I use a silicone liner.
The pain is deep inside the stump. It is made much worse when the skin of the stump is pulled in the direction of my hip or groin. This is the exact action needed to put the silicone liner on, or when pushing the stump into the socket.
My prosthetist (Bradley) has been trying to build/invent a socket that does not require a liner, and does not require pushing, to get the socket on.
This is very time and labor intensive for Bradley, his assistants, and for me. Every new idea has to be implemented on a socket with mold making, silicone shapes, and plastic castings. A few days ago Bradley took another plaster mold of my stump. I had been wearing a compression sock on the stump for days to make the stump as small as possible. Wearing the compression sock is not painful, but getting it on, is a long slow process if I avoid pain.

A small, low volume stump is much better than a stump that has water, muscle, or fat in it.
 Check out the size of the thigh socket on this Para-Olympian runner.

This lady is Sarah Reinertsen.

https://en.wikipedia.org/wiki/Sarah_Reinertsen
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Proprioception is the unconscious perception of movement and spatial orientation of a limb.
This is important when walking with a prosthesis, because there is no normal nerve feedback regarding the position of the foot or leg. I find it essential to know when the heel is down, and the knee is locked.

When you have been sitting funny for a long time, and try to stand up, finding out that your leg or foot is numb (asleep), you immediately sit back down. You can not walk if you can not tell if your leg can support you, or even where your foot is. I have this "numbness" permanent in my prosthetic leg. What paralyzes you, is normal for people wearing a prosthetic leg.

The closer the prosthetic leg is to the skeleton, the greater the sensitivity, and feedback from the prosthesis to the brain. Many people choose to have the prosthesis attached physically to the end of femur.
This is called Osseointegration.

Wikipedia says:
What are the advantages of Osseointegration?
  No socket – therefore, no sweating or skin irritations caused by the socket
  No pain, pressure or discomfort caused by the socket,
  Easy to don and doff the prosthesis.
  Excellent suspension.
  No restriction of hip movement.
  Comfort in the sitting position.
  Osseoperception – a more natural sensation of the prosthetic limb
  Increase of bone and muscle mass

What are the disadvantages?
    Long rehabilitation process: in total, it may take up to 18 months for the entire process to be complete
    Risk of infection
    Risk of fractures and loosening of the implant
    No high-impact activities permitted, such as running or jumping
    Swimming in public facilities is not recommended
    Daily care of the abutment skin area is required

It is not for everyone, and hopefully not for me. The reason I have been learning about it, is that often it is used by amputees that are unable to wear a socket.
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OK... back to my 5 hour visit to the prosthetic shop/factory yesterday.

Bradley had a long tube shaped piece of very slick parachute cloth that is put over my bare stump. The end of it goes through the small hole at the bottom of the socket. This hole is for the vacuum valve. I put my stump down inside the slick cloth coated socket, and then Bradley would pull out the cloth through the hole.
This means my stump is "pulled into" the socket, and not pushed into it. It gave me zero pain.

After pulling the cloth out, my stump was way down into the socket, and my dry skin was sort of stuck to the silicone inside of the socket.
The way I currently don the socket is to lubricate the silicone liner with a glycerin mix, and push the stump down inside the socket, called a "wet" doning. Bradley was trying a "dry" doning with no lubricant of any kind.

But my stump wasn't far enough into the socket. I was not able to force the stump in any farther because of the dry skin against the silicon was forming a non slip surface. Getting the socket off was a battle. It was really stuck to the skin. Fortunately pulling my stump is not painful, and with one assistant holding me tight and pulling, and Bradley and another assistant pulling the socket, we were able to get the socket off.

We tried many ways of getting the stump farther into the socket. All failed.
We got desperate, and cut a slot in the outer hard shell of the socket. $$$ This expanded the shell, and I was able to get farther into the socket, but still not enough.
Then we also cut the inner silicone liner of the socket. $$$ This allowed me to get the stump in to the proper depth, but made the socket very weak. But now we know the exact amount necessary to expand the socket to make it work by measuring the gap in the cut. Next week they will build another, slightly larger socket, and we will try the cloth through the hole trick, and dry doning with the larger socket.
Hopefully I'll end up with a tight socket that doesn't cause me any pain to wear, or to put on.

I was supposed to be in George with Maddie last week, and then again this week, and now even next week is not going to happen.
Planing a life is futile, when that life has to include a prosthesis and cancer.
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May 20 2016 - Testing the Total Knee 2000

14:30
Last Wednesday they took a new plaster cast of my stump. Bradley first measured my stump circumference, and said it is much smaller, and time for a new socket. We are not sure if this will be the final socket, or just another temporary socket on the path to a permanent one.
The constant wearing of a silicone liner, or a sleep shrinker sock gradually reduces the volume of the stump. Some people have a stump that looks like a skin covered bone. My stump varies in volume more than most. That makes it hard to fit snugly inside the socket.

Here is the nylon sleeper sock I wear at night. This is necessary to make the stump small enough to fit in the socket the next morning.

 If I don't wear a liner for a few days, then my bare stump is so large, that it won't even fit in the socket. If I wear a liner and wrap the stump, then the next day my stump is so skinny, it goes right to the bottom of the socket with little touching of the sides. This variance in volume is why I use stump socks. Stump socks  are toeless, fluffy, wool socks that are used to increase the volume of the stump.

Stump socks like these go between the stump liner, and the socket.

A tight, snug fitting socket makes feedback from the prosthetic leg much more sensitive. I can easily "feel" the leg when it hits the ground, and I can "feel" if it is locked before I put weight on the leg. Each layer of stump socks reduces the sensitivity, and makes the leg feel more "sloppy".
Also having layers of wool sock between the leg socket, and my stump makes the alignment of the leg to be less precise. The prosthetic leg is allowed to rotate on the stump more than a tight, snug socket would allow.

I normally wear 3 stump socks now to get a tight fit. I am looking forward to the new socket that should require no socks. Of course needing no socks, also means that a slight swelling of the stump may prevent the stump from being able to fit into the socket. A smaller socket means more control and feedback when everything is working as should, but also means less variance is allowed in the volume of the stump. Socks can add volume, but nothing can reduce the volume except constant wearing of some kind of stump shrinker.

While I was at Bradley's, his next patient arrived, a 5 year old boy. The way this boy was zooming and jumping and climbing left no doubt that this kid was used to his prosthesis. He lost his left leg below the knee about 2 years ago. while I was getting my leg on, he came over, and swung on the parallel bars. He looped his feet and lower leg through his hands, and hung by his knees. Cool to see.

Today I decided to give the Total Knee 2000 a good walk. I walked about 4 km in 1:20. The total knee swings forward much easier than my Mauch knee. It also feels more stable once it is down and locked. The ease and quickness of change from locked to floppy still worries me. But I never stumbled or fell.

This short video shows how easy the Total Knee 2000 locks and unlocks
https://youtu.be/m6Mjxi1Wm9U

One thing I did notice was while walking with my Mauch Knee, I sometimes hear the toe scrape the ground. Just a slight "swish" but enough to warn me that my attention is not all there. Today the Total Knee never did a swish. The fact that it shortens the leg on swing forward is a welcome, noticeable, characteristic.

Maybe tomorrow, I'll try a walk to the mall.
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May 17 2016 - New (To Me) Knee

17:00
I just spent a few hours with Bradley, my prosthetic guy.
The loaner Mauch knee was swapped for a loaner Total Knee 2000. A totally different concept in prosthetic knees.
My own Mauch Knee is still in Iceland getting repaired.
Tomorrow I will spend many hours with Bradley. I need a new socket. He wants to do completely new measurements as if from scratch. So tonight I will wear the silicone liner, AND in addition, I'll wrap the stump,  so that tomorrow it will be as small as possible.
The current socket is too big. I have to use 3 wool socks between the liner and the socket just to get it to fit. But that means the socket is more "sloppy" and doesn't fit tight.
With this new knee, I can feel the stump banging into the sides of the socket. Like a bell clanger.

The Total Knee 2000 is a polycentric knee. It uses lots of funny mechanical motion to do a few things.
It more mimics the motion of a real knee. The bottom part slides back as the knee bends, just like a real leg. It polycentric design also makes the leg get shorter as it bends. This makes it less likely to catch the toe on something because the leg is shorter while the leg is swinging forward. It also makes it lock much more solidly than the Mauch knee does.
The Mauch Knee uses hydraulics to cause resistance for the knee to unlock. So if it does unlock, it gives a warning of increased resistance in bending. You will still fall, but you have more warning, and you fall slower.
The Total Knee 2000 has like 2 possible states. Locked solid, and floppy.
The lock is much more positive than the Mauch Knee. With any weight on the heel it is locked solid. Very secure. Put weight on the toe, and it is floppy loose. Like no resistance to fold up.

Here is a short video showing the Total Knee 2000 motion.

https://youtu.be/FO_BTNMnJFM

I am actually fibbing a bit. The Total Knee 2000 has a very small hydraulic reservoir than feeds some small orifices, that create slight resistance to motion. I can't feel it, but the book says it is there.
The Total knee also uses colored rubber blocks to create the resistance to breaking loose force when standing with knee locked. This makes it easier or harder to enter floppy mode from locked mode.
The Mauch knee does all that with hydraulics.

Bradley has just been on an Ossur conference. There they told and showed all the newest innovations by the company. The companies newest prosthetic is called the "Pro-Flex". It is an intelligent ankle and foot unit. It allows 27 degrees of movement to the flexing of the ankle. It progressive increases resistance to the flexing to allow the weight to be on the toe, or on the heel. They claim it allows walking up and down slopes.
But it is still VERY expensive. To many zeros on the right of the price.

At the conference were many people from the different medical aids. Ossur showed many statistics regarding above knee amputation co-morbidities. They gave lots of examples and statistics showing that a medical aid paying extra for an active ankle actually saves the medical aid company money. Many above knee amputees soon have problems with the good knee because of the added stress put on the good knee. The Pro-Flex ankle reduces stress on the good knee by up to 70%. They also showed that a knee brace on the good knee saves money in the long run.

I'll know more tomorrow. Now for drugs to stop the PLP.
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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. :-(
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Feb 23 - 24 - Last Chemo (KOW) :-)

Feb 23, 08:00
I have a busy day planned.
First, my last blood test is this morning.
I have a prosthesis appointment at 13:00 to get the leg adjusted for my new shoes.
Then at 14:00 I have a physio appointment.

Tomorrow will be my last chemo for awhile. I have done 16 weeks of weekly blood tests and chemo. I am looking forward to no needles for 6 weeks.
I am also looking forward to finding out how much of my chemical imbalances are chemo related, and how much are drugs related. I believe my narcolepsy is chemically induced from the chemo. That is why I will wait about 5 days after my last chemo before I will risk the drive to George.

My eating habits will improve while I am being fed by Maddie in George.
 I think that eating only a hand full of rice a day, is healthier than eating a box of Twinkies and a bag of Doritos. Healthy eating isn't only about eating healthy food, it is also about NOT eating unhealthy food.
Except that some foods, such as ice cream, are nourishment for the soul, not the body. :-)

Today is cool and cloudy. A relief from the high temperatures from the last week. This whole week should be cool and cloudy with afternoon rains.

Yesterday I walked 2.0km in 41 minutes.
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16:00
Blood taking was normal. Hopefully I will not see the blood ladies again soon.

I had a long list for Bradley, the prosthesis guy .
Bradley says he has a good friend, Allan Oats that does prosthesis in George, and he recommends him highly. He says I'll be in good hands for any emergencies while in George.

He grounded off part of the socket.

He adjusted the leg for the new shoes.

He changed the setting to be better for faster walking.

Whew...Physio was rough, Leonie must have some Nazi blood in her. :-) We first went over all the exercises she wants me to do while in George. Then we did all the exercises. Then she played like she was my girlfriend, and had me explain each exercise to her and teach her how to help with each one. There are about 10 exercises, and maybe half need a partner.
Maddie and I will have to go shopping in George for exercise toys. I'll need a brick, a tennis ball, a soccer/basket ball, and a heavier sand filled ball.
I had to shower when I got home.

In the parking lot was an Indian guy selling samosas, so I bought lunch.

The physio has me tired, but also lots of Phantom pain. I am trying to cut down on drugs. I have picked a bad time to do that.
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Feb 24, 18:00

I ran out of pre-paid internet last night and couldn't publish yesterday's blog.

Today I first went to the prosthesis place and got some stump socks. Many people on the internet use stump socks.
When I wake up in the morning my stump is a bit large, and won't go into the socket as far as it should. So I walk around with the leg too long for a few hours. I sleep with a compression sock on the stump at night, and it helps, but not 100%.
By around noon the leg fits perfect. This is usually the time I go for my walks.
The fiberglass socket is shaped like a cone, so as the day progresses and I keep putting weight on the leg, it squeezes the stump and forces it to get smaller.
By around 2 or 3 in the afternoon, the stump is fitting too far down into the socket. As the volume  between the stump and the socket bottom gets less, the vacuum tends to get more. This extra strong vacuum makes blood blisters on the bottom of the stump. This can be painful.
The stump being too far into the socket not only makes the leg too short, but it allows the stump to hit the bottom of the socket.  This also is painful, and it is often on the blisters.

Bradley came up with two ideas. They make soft "volume control pads" to fit in the bottom of the socket to decrease the volume between the socket and the stump. This helps to reduce the vacuum, and the soft pads keep the stump off the bottom. He also gave me some stump socks. Because I don't have a problem with the bottom of my stump, the socks have the ends removed. I put them up high near my groin and hip. This widens the upper part of the stump, so the leg doesn't go in as far. He gave me 3 socks, so as the stump shrinks, I can keep adding socks.
Some guys on the internet have stumps that shrink a lot. They may add up to 5 socks as the day progresses.

I next went to get the blood test results. My Leucolytes (white blood cell) count was fine. My Haemoglobin count was the lowest it has ever been. So I recon Maddie will be feeding me chicken livers. Yech!

I was early, so I checked in with the chemo place on my way to get coffee at the restaurant. They said they had a cancellation, and could start me then. I went straight in.
All chemo patients have an interview with the oncologist before each session. Since I was early, she quickly asked if everything was OK, and I said yes. She said she would talk with me after chemo instead.
They started the IV and the four pre-chemo bags of chemicals, then started the actual chemo drug, Paclitaxel. I saw this bag was labeled 152mg, where I normally have 132mg. It is normally chilled, and I could feel the cold go in the arm. Air tends to stay in solution of the Paclitaxel, so they put a 2 micron filter in the line to trap any air bubbles. This dose of Taxel was very milky with trapped air particles, and it was cooler than normal, so less air escaped the solution.

After about 10 minutes the drip stopped. They pushed and pulled the IV in my arm, to try to get it flowing. They decided that they needed a different vein for the IV.
They put in another needle and IV. Grrr...
This one also failed to flow, so they tried another Vein and IV. GGGRRRRR!!!!!
Now my sense of humor had fled the room.

I start trying to trouble shoot the IV system. It must be very similar to aircraft hydraulic landing gear. Right? So I shooed the nurses away, and squeezed the hose. When I squeezed near the IV, the little bubbles moved back and forth like they should. If I squeezed up at the bag no bubbles moved, so obviously there was a blockage. I then squeezed on each side of the filter. On the IV side the bubbles moved, and on the bag side nothing moved. Therefore the filter was blocked.
I explained that if the Taxel solution is too cold, then there will be too much air, and the filter will get full of air, and this will not allow any fluid to flow. I told them to bring me a different filter, and I would change it. I must have said something blasphemous. They looked shocked, and sort of backed off and then said THEY would change the line AND the filter.
Of course then the Taxel started flowing again.
After I chatted with the oncologist, she gave me a form to get blood checked in George after 3 weeks. Then she gave a 6 week prescription for all the drugs I will need. She will call the PET/CT scan people after reading the blood results after 3 weeks, then the PET people will call me with a date for the PET scan, and I'll drive back to Pretoria. So the next time I'll see the Oncologist will be when I have the PET results in my hand.

My precious wind up, single handed watch took a real hard knock today, but thankfully it kept on working.

Now to sleep lots, or stay awake lots, what ever the chemo Gods proclaim for the next few days. Then to start packing the car for the trip. I can't wait to "be on the road again".
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PS: KOW = Knock On Wood