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

Feb 19 - Shoes and falling

10:00
I woke up at 07:30, and then fell asleep in the wheelchair in front of the coffee machine.
I have much that needs to be done today. I hope I don't nap the day away.
I worry about having a nap attack in a mall.

I need to buy new shoes. Shoes are not a simple thing for an amputee. I want good shoes to protect the vital good foot. The heal height is important. Otherwise the prosthetic leg will think it is on a slope, and I have talked many times about the dangers of slopes. Usually the prosthesis guy will readjust the prosthesis for each pair of shoes. So I plan on buying new shoes as close as possible to the heel height and slope as the ones I have now. If the shoes are identical in height and cushioning, then they can be swapped without going to the prosthesis guy.
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I prefer going to the mall with a friend. I worry about falling. My one friend has been given a lecture by me about how to handle things if I fall.
This advise is for a relatively strong amputee that has fallen. It does not work well with elderly, or frail people. They have a totally different fall recovery technique.

One thing is for sure....Never pick a fallen person up without their permission!!!

If I stumble and fall in a mall, I have asked my friend to:
1. Stand and block, so nobody will trip on me, or step on me. Make sure nobody tries to pick me up.
2. I will be in shock. I was walking along, and now the floor is in my face. This will take a few seconds for me to realize what is happening.
3.  Maybe I broke something, or injured a shoulder or wrist. If you try to pick me up you can cause major damage. Let ME safely check to see what I may have hurt.
4. If I have hurt something, or you can see damage, call 911 and get help. Let me just lie there and keep me safe from other people wanting to help stand me up.
5. If I am undamaged, then we can think about getting me back on my feet. Balance is more important than strength in getting up. If I am trying to stand, and someone pulls on me anywhere, then my balance is put off. Don't help me up.
6.  When I am ready to try to stand, I want someone standing close, and acting like a tree.
7. Stand with wide legs. Put one hand on your hip,and grip it with the other hand. I will climb up you like I would climb a tree. Don't help unless I ask for help.
8. If you are not strong enough to be a tree for me, then once I am sure there are no injuries, drag me to something I can use to climb up, or ask someone strong to be a tree.
9. Only as a last resort ask for someone to help lift me up.

If I fall in a house, bring a strong dining room chair, and put it close. I can climb up it.
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19:00
At about 13:00 I walked out to the beetle. It started right up, and I started moving out the emergency
equipment out of it into the Atos.
Then I decided to go shoe shopping at a big mall. Arriving there I realized it was 14:00 and I had not eaten anything all day. Nothing except lemon water and coffee. So I had a pepper steak pie.

I went to Takkie Town and looked at lots of shoes, and tried on many. I ended up with some New Balance for 799R.

Then I decided that since it was 16:00 and rush hour, I would walk up and down the ramps in the mall. So I went up and down and up and down the steepest ramp in the mall. I got much better, but still not comfortable enough to do it with out hanging on to the banister. Then I drove home in the traffic.

Once home I put on my new shoes to see if they would work with the leg.
They seem to. I was very careful about heel height and slope of shoe.
I decided to go for a walk. I tried Leonie's suggestions to walk fast.
I did 1 km in 18:30. That is 3.3 km/hr. Zoom Zoom. That would be a park run
in 1 hr 30 min. I'm getting there.
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Feb 18 - Wasted day

19:30
Yesterday's 15th Chemo was nominal. I chatted lots with a fat lady. She had lymphoma cancer.
Afterwards, it was pouring with rain. I couldn't even see the parking lot from the doors, so I sat in the hospital cafe and ate lots.
I had a bad night after chemo, and only got to bed after 3:30. Lots of Phantom Pain. I think the physio session made the pain worse.
It works much better to just stay up till I am falling asleep, then go to bed. That saying "bed is for sleep only" works well.

I only awoke this morning at 10:30. I have had many 1 and 2 hour naps today. I had a long list of things to do, but I never even got my leg on, or opened the front door. All I have eaten today is one peanut butter sandwich.

I need to start getting ready for the George trip. I wanted to start the beetle, get the tool set out of it and put it in the Atos. The Atos horn stopped yesterday while I was using it.  Internet says probably bad steering wheel airbag ... $$$. I'm hoping for a loose wire.

I laid down after almost falling out of my wheel chair at 15:00. I try to stop the wheel chair with something soft in front of me. I just got up at 19:00. Sleep will be hard to come tonight.
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Feb 16 - Blood and Physio day

07:30
 Finally a good night sleep. I went to bed at 11:30 and was up at 06:30. Seven hours of straight sleep. I feel like a  human.

I just had morning Lemon water, and am working on a cup of coffee. My coffee beans are 60% Robusta and 40% Arabica. The love of Robusta must be from time spent in northern Africa.

I have a busy day planned. First do dishes that have piled up, then laundry. I need to go to the pharmacy, then go do the blood test for tomorrow's chemo. This afternoon I have a physio session with Leonie. I am sure she will come up with devious ways to make me feel silly with the prosthesis.

I'm starting to plan my 6 week break after the last chemo, before the PET scan. The chemo tomorrow will be number 15 of 16. Only 2 more to go.
I'll be driving to George to bother Maddie for 6 weeks. I think, driving will be better than flying because of all the paraphernalia for a new amputee.
I need a wheel chair, crutches, and a cane. Lots of chemicals to clean the liner and socket. Plus a suitcase. The little car will be full.

This morning I weigh 85.8 kg. (188 pds). That is 8 kg (17.6 pds) more than in December. I am sure it is the new drugs. I have eaten so little in the past 4 days, I should be skinny.                                                                                                                                                  
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17:00
Just got home.
 Blood testing was nominal.

Then I got all hot and sweaty with Leonie. :-) Physio was hard work. We started out walking about 500 meters at different paces.
 Then we went inside to the parallel bars. So many prosthetic skills rely on balance on the prosthetic leg only. My body on the prosthetic leg balances on the outside of the foot, just behind the little toe. I must keep strong back pressure on the socket to prevent collapsing. She tried to have me do lots of almost dance steps with my good leg while balancing on my bad leg. I had to hang on to something. There were brief times when I could balance.
Next was "braiding". That is when you walk sideways by placing one foot on the far side of the other. sometime in front, and sometime behind. Very difficult with a stiff knee and stiff ankle.

Then we worked on getting up after a fall. We tried many things I finally managed to get up once with just the cane. I need to practice that a lot.
I told her I want to plan on doing a parkrun. She has done many of the local parkruns. We went outside and she watched me "race". She had a few very good tips to speed up my walking. She says she has seen many above knee amputees walk very fast. Almost running speed. She said she wants me to be a very fast walker before thinking about running. She suggested a light strong walking stick, as long as from the ground to my elbow. Then using that, move my arms in an almost exaggerated swing while using the stick only on the right side.
Next week we will move on after I show her my mastery of the stuff I've learned today. She will also give me an exercise program for the next 6 week while I am in George.

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Feb 15 - Feeling Human again after chemo

09:30
I have had a very strange last 4 days. Since the last chemo I have slept so much. I don't know if the chemo is the cause of the sleeping, or all the drugs. Maybe both.
The other day after 12 hours sleep I was in the wheel chair going to pee, and fell asleep in the wheel chair for over an hour. I awoke and really had to pee.
I was supposed to wear my leg to try and get the stump shrunk enough for a permanent socket, but I just went 2 whole days without even putting the leg on.

I put the leg on this morning before getting out of bed, and will try to wear it all day.
Yesterday in between naps I walked 1.5 km. I was trying different settings on the hydraulic cylinder for the knee. Today I will try walking after increasing the flexion resistance, and decreasing the extension resistance.
That leads to a much smoother walk, and looks much more natural, but it makes it harder to feel the leg position, which makes a fall much more likely.

I went to the local pharmacy where one of the pharmacists is a man that is an above knee amputee like me. He and I always chat about our problems. He is a supervisor, so gets away with chatting to a client. He has a C-Leg micro processor controlled knee.  His face was all yellow, and his nose was huge. 

He told me that his wife's boss was retiring, so there was a big black tie party. They arrived and he went to the free bar to get a drink for him and his wife. The bar was crowded. He got the drinks, and stepped back to give her her drink, then stepped forward to get his drink. Stepping back had put pressure on the toe, so unlocked his leg, and when he stepped forward to get his drink the leg collapsed. He fell and hit the bar counter with his upper lip just below his nose. It broke his nose, and knocked him unconscious. He woke up in an ambulance covered in blood. 

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I have been playing with Google Analytics. It is a Google service to show the audience of your web pages, or blogs. It shows me graphs and data like these.

This shows the monthly volume of sessions for my blog by the location of the inquiring server.

This shows by country for the last month. Note lots from China and Russia. These are hackers trying to take control of the web site.

This page shows sessions, and bounce rate. Bounce rate is when someone accesses the blog, but doesn't stay long enough to read anything, like a hacker. I can also ask it to show the bounce rate by country, and almost all bounces are from China or Russia. This also shows number of session by city.

A session is when someone stays on the page at least for a minute. In other words, a session is probably a real person reading the blog.

I can get a much more detailed analysis if I want. Like which IP Address accessed the blog. This means I could with a little help tell who accesses the blog. It shows how easy it is for the NSA to get information on people.

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My laptop had stopped working. It was like the keyboard was broken. The internet offered hundreds of stupid and useless ways to fix it, but one guy said it could be due to a swollen battery pressing up on the keyboard, so many keys were stuck in the pressed position. That was it. I removed the battery, and the laptop works fine. Now to buy another battery.

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14:30

Temperature is 34C (93F) and I just walked without cane and without crutches, 2.02 km. Which is 2.6 km/hr. 

That would be a 2 hour Parkrun. They stop timing after 1 hour. I feel I could improve maybe 10% with practice, but to cut my time in half, I just don't think so.                                

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Feb 9 - Another Blood day

I had a good night sleep, but it was drug induced. :-( Lots of PLP.

Today I have not used the wheel chair or any crutch. When doing long walks I do use the cane.

I found a wonderful web site about Transfemoral amputations and the prosthesis used.
http://www.amputee-coalition.org/inmotion/mar_apr_04/transfemoral.html
They have 5 articles.

Today was blood test day. I walked to the blood test place. They were not busy, and I ended up talking to the ladies for about a half hour. I then didn't feel like eating at the local restaurant, so I just walked back home.

Today I walked 1.9 km. Walking time 1:05. I think I walk at about 2 km/hr. The articles I have read say the average patient selected walking speed for AK's is 2.5 km/hr.
With both legs, I used to walk at about 5 km/hr.
I was upset because I am so slow, but it looks like I am almost up to the average for above knee amputees.

In the last 5 days, I have walked 5 km with just a cane for support.
 One problem everybody has with an AK prosthesis is taking smaller steps with the good leg than the prosthetic leg. The physio is always telling me to lengthen the stride on the good side. The cane helps with that, because the cane is on the good side. One reason it helps to lengthen the stride on the good side is because it make the toe off at the beginning of the swing phase more pronounced, and should reduce stumbling. But I feel going faster to be scary.

Even the 1 km walk in 30 minutes is very tiring. I am not in good shape for this type of exercise.
I need a good soft grassy area to learn to run on. Then I'll be zooming.

Tomorrow is chemo day. I think it will be number 14. Two more, and I will be done.  :-) .....
Till the next time :-(

I will only use a cane and the leg at the chemo tomorrow.
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Feb 5 - long crutch-less day

08:00
I woke up at 06:00 and got up, then laid down for a nap, and only got up now.

I had a restless night, but not from PLP. I was just restless, and tossed and turned all night.
I had little PLP, I hope my new drugs and socket are doing that, and it isn't something that will change later.
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11:30
I went to Bradley and he removed my little seat on the back of the socket that I loved, but made walking difficult. Standing for long periods, like doing dishes will be harder, but walking will be easier.
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15:30
I just walked one kilometer with only a cane. 30 minutes exactly. I didn't stop once, and got very tired.
I was thinking how if I could do a 5 km parkrun, I would consider myself cured of a missing leg. That dream is a long way away.
I used to walk at a leisurely 10 minutes a kilometer.  My fastest parkrun was about 7 minutes per kilometer.
I now can do one kilometer in 30 minutes. That would be a 2 and a half hour parkrun. I think I need to learn to run with this leg.
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21:30
I drove to the local shopping center, and bought fish and chips. I only took a cane with me. So today was a busy day, and also a crutch-less day.
I walked a lot, and only took the leg off 13 hours after I put it on. I like this new socket.
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Feb 4 - New Prosthesis Socket

I slept very well. 

I tried something new, and it worked well for one night, but I don't want to jinx it by saying how much I hope it works.

I took no pain pills, and no muscle relaxers last night. Just a Cymbalta (which is a long term nerve blocker), and a large dose of anti inflammatories. I thought that if the phantom pain was caused by wearing the leg so much, that the irritation of the end of the stump was putting stress on the cut nerves that used to run down to my feet. So maybe an anti inflammatory would relax the tension on those nerves to remove the phantom pain. I had very little phantom limb pain (PLP) last night. It was there, but manageable.

I didn't wear the leg much the last few days, as the stump has shrunk so much, that it bottoms out in the socket. Yesterday I went to Bradley, and he said that I need a new socket. But he doesn't think a permanent one can be used as the stump varies so much in size from day to day. But he made a zillion measurements and took my leg and told me to come back today.

I did laundry and managed to hang it up using crutches. I miss my leg.

Maybe me not wearing a leg for a few days was the reason for little PLP last night.

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I went to Bradley today and got my leg back. 
Bradley had the new socket ready. It is MUCH thinner than the old one. I
kept the silicone liner on all night, and wrapped the stump in addition. So this
morning was the smallest it has ever been, and into the new socket was
tight. It feels very snug, and there is much less movement. It feel a
lot more like a part of my leg, than a big thing on my stump.

In the factory I walked all over without a cane or crutch. He expanded
the socket flare at the upper rear of the socket. I like that, because
when I stand it feels almost like a seat, and forces the knee into lock.
So I can stand for long periods of time without thinking about the leg
collapsing. (Washing dishes, brushing teeth, hanging laundry, chatting
with people)
He also expanded the bottom end of the socket, so the end of my stump is never touching anything. So maybe it will not cause as much phantom pain.

But now that I am home and walking around, I find the little flare seat
to be restrictive to my walking. I think I might have a blister already.
I wanted to walk to a restaurant for breakfast tomorrow, but not now. I go to Bradley at 10:00 tomorrow and they will remove the "seat" I like so much 

The whole walking feels more natural with the tight socket. There is
much more feed back from the motion of the leg to my thigh. I might even
be able to increase the extension resistance a bit. Now the leg sort of slams into full extension. I feel like a Nazi goose stepper. Increasing the resistance makes the leg go forward slower. That makes the feeling at extension more subtle, but also makes walking look more natural.

I told Bradley that I walked with a cane and found it much easier. He
says that about 80% of his long time above knee patients use a cane, but
are capable of walking without one. Sort of like me.

I have worn the new socket all day today. I'll try the same drugs tonight, because I know there should be lots of PLP tonight.

I was able to get the laundry off the line easily.
I had a good chat with my neighbor.

I hope the removing of the little seat will allow me good walking.

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Jan 28-29-30-31 - Lots of new drugs.

Jan 31 17:00

All those new drugs seem to only make me sleep. On Wednesday night, Thursday night, and Friday night I took all the pills like I was supposed to. Not much PLP, BUT... I slept about 40 of the last 48 hours. When I was awake, I had terrible balance problems, and never used my leg, only the wheelchair.
Of course I ate very little, and my poo-er became blocked.
During this time there was a definite reduction in PLP, so I need to find which drugs are good and which are bad. I fear that the PLP was reduced, simply because my brain was not functioning.

Last night I went back to my old cocktail of pills that helped last week. I got a good 9 hours sleep, and I woke up a bit clearer headed than any day for the last 4 days. I put on my leg, and went to the mall. I have lots of shopping, but it is month end and the stores are crazy. I ate fish and chips, and bought a bag that slings over one shoulder. Better for walking, and crutching.

One thing the physio lady proved to me, is that I can not get up after a fall if there is not something to grab on to. I fell last week in the middle of the road, and could not get up I had to crawl to a tree and get up using it.

Back at home I decided to do a walk. But I now take a cane with in case I fall. I can get up with a crutch or a cane. After walking about 100 Meters, I started using the cane to help walk, the cane makes balance so much easier, and my steps become longer. I did my half a km, then did it again. 1.03 km in exactly 30 minutes.
I think that if I use a cane, I could get to the small shopping center nearby. It is .8 km. Rest there, then back.
The cane really helps the balance, but it will not help during a fall, only after a fall.
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