Day 115 - Wheelchair shopping and blood day

08:20
I slept very well, and am wide awake now with no desire to take a nap. We need to follow the pill plan that works well for sleep.

Today the phantom pain is less. It is constsnt, and definitely there, but I really think it is getting less.

I also need to blog more during the day, as I seem to be more depressed in the evening and before bed.
 I just had a good breakfast. Egg and broccoli. Yummy.
Now to get ready for my epic journey to the Phlebotomist, and back.
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17:00
I went to the plebotomist, and then to the coffee shop nearby. My left shoulder was complaining, so I decided to read my book till Maddie could collect me. I only crutched 1.16km (.7mi)
 Then I drove by myself to the tire place to have our new cars tires all checked.
Then I went to the bank to increase the amount I can send electronically each month,
Then I went to a local wheelchair shop to see what they have. For R3200  ($230) I can get a wheelchair with movable arm rests, removable wheels, and  fold-able aluminum frame.
The wheelchair that we looked at a few days ago has all that, plus a longer seat to support my stump, variable CG adjustment, a much better armrest arrangement, and better front casters. I can also pick spokes or mag wheel, and pneumatic tire or solid tire for no charge. But this wheelchair costs R9800 ($710)
We will see whats available in George first.
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 22:45
Once again we fail to have an early night.
Chemo is at 09:15, so we have to leave by 08:30 and get up at some time that I don't even want to know about.
Right after chemo is the Wound Care Lady. I hope the chemo is an easy one.
I also want to see if I can drive home after the chemo.
 Usually right after chemo I am still half out. I used to have a big breakfast, then drive home. The sleep usually hits a few hours after the chemo. So there should be a one or two hour window for me to drive in.
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Day 114 - Planning for George, and shopping

07:30 I am very sleepy, but I need to get into an early morning routine.
I ate only an egg for breakfast. First step in my weight loss program.

12:30
I just woke up from a nap. I went back to bed, and slept another 4 hours. All I seem to do is sleep.
We just had lunch.
We read about places to go while we are in George.

I read about robots being used to aid the elderly. Also about an interesting concept:
http://www.opensurgery.net/
These people are promoting DIY robots using open source software that do the job of current robotic surgery robots. So maybe you can build a robot to do your appendix removal in the comfort of your own home. :-)

At 15:30 I was asleep again.
Maddie left to visit some friends.

At 17:00 I awoke and went for a crutch. only .4km. Then I read my book and then Maddie came home.

My life is boring. Even I am bored by telling about it. I have not done anything enjoyable, or exciting in weeks.

My life is either pain, or sleep.

We have deviated from the pill formula that gave a good nights sleep, so we are going back to it tonight.  I want a good nights sleep, but also, an awake day "after" the good nights sleep.

22:00
We just watched a movie..."Spin Boris". About the American spin artists that went to Russia to make Boris Yeltsin win the 1996 election.

Tomorrow I want to get up early and crutch to the blood test laboratory, then crutch back home. It should be almost 2km total.

How do I  push a super market trolley with just one leg?
How do I get food off the top shelf at the store?
How do I carry groceries to the car?
Maybe a big bag around my neck?

If I had my own wheelchair, I would outfit it to carry crutches, and maybe a basket, and maybe a grabber. Those would make me more independent.

Lots to do this week, getting ready for George. I am pretty sure that I will just take the fore arm crutches with, and rent a wheelchair in George.

We need to figure out how I will do the suitcase, and hand bag also. Maybe we will throw money at it and get a porter to do all the hard work.

We also need to get transport to and from the airports.

We need to sell the beetle. We started it this evening. It started straight away.

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Day 113 - Fat and Pain

11:45
I slept well, and  was up at 07:30, with little pain. I had breakfast, then needed a nap, and slept till 11:00.
  Maddie sorted out the plane tickets to George. What a hassle. We are both booked to George on the 4th of Dec. I am coming back alone on the 13th. It is such a hassle getting all the forms filled out for special needs air travel.

I will rent a wheelchair there in George. It is R80 a week. ($5.80) You can tell George is a small town when it costs less than a dollar a day to rent a wheelchair.
The same company also sells wheelchairs. We will shop there and maybe get a bargain. :-)

17:00
I just crutched 1.62km (1 mile). I could have kept going, but I got bored. I am definitely getting stronger.

22:00
I am having one of the worst bouts of phantom pain. Maddie always says that exercise brings the pain.
This morning I weighed 82.5. Right after amputation, I weighed 77.8. That is almost 5 kg (10.4pds) in less than a month. All fat. Mostly in my tits, and gut.

I used to do much more exercise, and I used to eat far less. So tomorrow, I will start eating about half of what I have eaten in the last few days. I need to crutch lots more, and stop being a slug.

I just took a double dose of pain pills. They don't help that much with the pain, but they do tend to knock me out.
I hate the bed. Any time I am awake in bed, it is because there is phantom pain. If I am asleep, then I have no pain.
Consciousness + Bed = Pain
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The French Angiosarcoma Unit released a good report in 2011.

http://annonc.oxfordjournals.org/content/early/2011/05/12/annonc.mdr138.full

It does good comparisons of the different chemo treatments.

 It looks like weekly Paclitaxel is the best that modern science can offer for angiosarcoma patients.
Yet right now, I am concerned with phantom pain. The elephant is not here now.
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Day 112 - Wheelchair shopping

It was a pretty normal night. In bed at 23:00 and finally asleep at 01:00, and up at 08:00.
Maddie has a hair appointment, and there is a nice coffee shop that I like, next to the hair place.

I drove us there, and I sat, drank coffee, and read, till Maddie finished next door.
When I arrived at the coffee shop, the manager was giving a talk to the staff. He was a large Afrikaner about 30 years old. He looked very like a rugby player on steroids. The way he was talking to the staff was like from the apartheid era. Not with the words he used, but with the tone of the words. The government can legislate the words you can say, but how do you legislate voice tone?
As I finally got to the top of the steps, one young waiter came over and started moving a table and chairs away to give more room for me with my crutches. The boss man yelled at him saying " Hey!. If you want to keep working here, you better listen to me when I am talking to you."
The boss man never even looked at me. I gave the waiter a good tip.


It is funny, but most of the times I get a good feeling about the future of this country, is from encounters with young black people. Not from agood work ethics, or a good education, but from a "good manners" point of view. They seem to have a built in respect for an old, crippled, man. It must be a cultural thing.

I then drove us to a wheelchair store. It was a large store and just wheelchairs. The manager showed us the 4 chairs that seemed to fit my needs best. One had too few features, one was just right, and one had too many bells and whistles. Then she showed a very nice $$$ one.
The best folding wheelchair was R80,000 ($6,000). That is more than I paid for the car. The one I liked best was still expensive at about R10,000 ($725).

There are many things about this chair that I like. The front caster wheels are large, and as a free option, can be fat  carpet friendly wheels. The main tires can be either solid rubber (no flats), or pneumatic bicycle tires. The air filled tires are lighter, and they allow varying the tire pressure depending on terrain.
The main wheels come off very easily to make it easier to load and unload in the car.
From my hip to the end of my stump is 53cm. (21in.) All the chairs we have looked at have a set base depth of 40cm (15in). That means my stump hangs over the edge, and hurts after only a few minutes. The cheap, old chair we are borrowing, also has a 40cm base, so I have to put a large book under the stump, and a towel on top. The chair I like, can come with a 53cm long seat base for an extra R500 ($40).
The armrests height is not adjustable, but they do fold back out of the way so you can fit under a table, like to eat, or compute. The length of armrests is important because I use them to help get up out of the chair. Some armrests are only about half length, and don't help at all.
This chair comes with little wheels that stick out the back to prevent falling backwards. They adjust many ways to stop tipping right where you want it to.

I am wondering if me going to George with Maddie is a good idea. I would like to see where she lives, but that money would probably be better spent on a better wheel chair.

Lots to think about.
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Day 111 - Toxal and money

13:00
I battled to fall asleep with the phantom pain, but when I finally did, I slept for 11 hours.
One good thing about phantom pain, is that I concentrate on it and don't see the angiosarcoma elephant in the room.
 
I have been reading about Taxol. That is the main ingredient in Paclitaxel, the anti cancer drug I get in my chemo treatment.

Throughout history the Yew tree has been used for many purposes. The wood was used by English archers to make the long bow, and it was used to make barrels. It was also used as a poison, hence the name Taxol (Latin for Toxic). The Latin name for the Pacific Yew tree is "Taxus brevifolia".

In the 1960's, the bark was stripped off the Pacific Yew tree, and the poison taken out. Stripping the bark kills the tree. It took about 2000 mature trees to make 1kg of Paclitaxel. In 1990 they found that Taxol was also in the needles of the English Yew tree. It was in higher concentrations, and the tree was not killed harvesting the needles.

They have since been able to produce Taxol synthetically in the laboratory,
but it is still cheaper to use the needles from the English Yew tree. This is how the main supplier of Taxel, Bristol-Myers, does it. There was some controversy about patenting something that is found in nature. But then most of our drugs today are from plants. Aspirin, morphine, quinine, cocaine, and many many others. That is one reason to protect the environment.
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22:00
I just fell off my wheelchair. It gave me such a fright. I wasn't playing around at all. I was just moving forward near the big chair. One of the front caster wheels met the chair at an angle, and the rubber tire rode up the front of the chair on an incline, and tipped the chair backwards. I was lucky because as the front of the chair lifted, the front caster wheel got stuck under the chair cushion, and slowed the fall into slow motion.
I would never have believed such a thing could happen, but it did.

I fear that I will soon need to get some money from somewhere. I am in debt to my friend, and Maddie. I do not do "debt" very well.
I need a wheel chair, and I need plane tickets to George and back. I dread to think what the tickets to the US will cost early next year.
I need to get into the mode of spending all my wealth in the next few years, and not try to plan for living another 20 years. I think that 5 years is max, so I better start spending quick.
It is a very difficult thing for me. I am a cheap, frugal person. and spending money on a wheel chair when I have crutches is silly to me. But it would make my life MUCH easier.
Spending all my money in the next few years, then living another 20 years would be a soul destroying event. Having planed so careful all my life, then have everything turn out so wrong....I guess that is why they call events like angiosarcoma, "Black Swans".
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Day 110 - 8th chemo

09:00
I slept well, but only after a few hours of phantom pain before dozing off.
I am wearing my new angiosarcoma bracelet, and my new watch. I really like this watch. :-)

It is chemo day :-(

First a nice fruit salad, and some anchovie toast.
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10:30
Getting dressed for the chemo. I tried on the new hat my Brother sent me. It has arm loops to keep it from blowing away. It needs eye holes.
Maddie told me to "smile", when she took the picture.

Maddie thinks the t-shirt slogan is appropriate.

11:30

We're sitting in the hospital cafe. Pre-chemo coffee and muffin.

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13:30

Getting chemo. 3 bags almost empty. Next should be Paclitaxel. that usualy makes me passout.

Some lady is making coffee. I hope she brings me a cookie.

Just sstarted the Paclitaxel. Bye bye.

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16:20
At Home.
I woke up and the Chemo was done, and the IV was out. Maddie was there with a wheel chair, coffee, and a cookie. :-)
While I was out, the Oncologist wanted to see me, but I was out, so she chatted to Maddie.
The oncologist has changed my chemo schedule. Instead of 12 weeks of chemo, she has me on cycles. Each cycle is 3 weekly chemos, and a week off (28 days). The cycles also mean that I will only finish chemo end of Feb. :-(

She wants 6 cycles of chemo. I have done the equivalent of 2 cycles so far.
After the next chemo (#9), I will have a week off.
That might be a good time to go to George and visit Maddie. I do the last chemo of the 3rd cycle on 1 Dec. The next chemo is on 15 Dec. I should be back for blood tests by the 14th. 
Maybe I could leave for George with Maddie on the 3rd of Dec and return without Maddie on 13 Dec.

Then I start thinking about logistics. Do I buy and take a wheel chair to George? Which crutches? That is going to mean we need to move me, Maddie, two large suitcases, crutches, and a wheelchair to the airport. How does Maddie drag 2 suitcases, and push me at the same time? When I come back, how do I drag a suitcase, carry my carry on, and wheel myself through the airport.
Airlines will only supply assistance once you are checked in and headed for the departure lounge. On arrival their responsibility stops at the arrival lounge.
A lot of research is needed. I also need lots more money. :-(
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22:05
 I have also been googling "wheelchair vs prosthetic vs crutches". Lots of research done there. Young military guys were the source for the survey. Basically, the higher the amputation, (foot, lower leg, through knee, above knee, hip) the more a wheelchair is preferred over prosthetics. The older a person is, the more a wheel chair is preferred over a prosthetic. Almost 80% of above knee amputees over 60 preferred a wheelchair for majority use. Because all the surveyed guys were military, they all had the best, expensive, bionic prosthesis.
Most of the guys have all three (wheelchair, prosthetic, and crutches). Crutches for midnight toilet. Prosthesis for socializing, and sitting, like at a restaurant. Wheelchair for normal around house, or for long periods of motion, like at a mall.
This makes me wonder at the wisdom of wanting a prosthesis at all. The old beat up wheelchair we borrowed has been my main mobility in house now for 2 days. It is sure a lot easier than crutches. I can zoom around like the office chair, but also go to the toilet, and bed.
I think logic and common sense say a wheelchair is far better for me than an office chair.
 There is a good wheelchair place near here. There prices have one to many zeros at the end. A nice wheelchair that is lightweight, and fold able, but it costs R30,000. That is what I wanted to spend on a car. Shriek!

It is now 23:00 and I am wild awake. Usually chemo makes me sleep. I just had Horlicks, and now a hot shower, then I will try bed.
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Day 109 - Wheelchair and phantom_pain

Last night was a pain night till about 12:00, then sleep.

It is difficult to remember the angiosarcoma while in pain from phantom pain.
This morning I wanted to crutch to the small shopping center near my home and have breakfast.
We decided that Maddie would drive there in case I needed help. The distance was .9km. After breakfast we went to the blood test place. We will get the results tomorrow morning before chemo.

 I am sure I could repeatably crutch to the shopping center. As soon as I can do 2km in one walk, I will try the shopping center and back to the house.

My Brother sent me a package from the USA. In it was a watch. It is a single hand, pure mechanical, wind up watch made in Russia. Super cool.

I don't think it is designed for longevity, But then, neither am I.

In the package was also goodies from the http://www.cureasc.org web site.
A shopping bag, a small flashlight (torch), and 3 bracelets.

We went shopping for a good office chair. We found a good one for R6100.00. Shriek! Nice chair, but I could see me computing the cost per sit down.

We then decided to not buy a chair because once the prosthesis socket is on, the whole dynamics of the leg on the chair will change. We might buy something that makes sense now, but is wrong in a month or two.
Also an office chair may be a problem with a prosthesis because the prosthesis will just drag on the floor without someplace to place the foot.

We also decided to try a wheelchair in the house, and see if maybe one would suffice. We used the old beat up one that the prosthesis place loaned us.
It works better than I thought it would. I can zoom around like in an office chair, without the possibility of falling over. A wheel chair will go into the bathroom, and with the grab bars I can get up and down safely. Also getting into and out of bed is easy. It may be a better "in house" mobility chair than an office chair. A good wheelchair costs R3000. About half price of an office chair. It could also be used in a trip to the mall, or going outside in the yard.

I am having lots of phantom pain right now. It is like the bottom of my foot is cramping, and curling the toes under the foot. Very painful.
I dread going to bed.
Bed sucks.
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Day 108 - How to Cone a stump

16:00
I slept well after a 2 hour battle with the phantom pain keeping me from sleep.
Last weeks chemo seems almost wore off. My angiosarcoma will only have to wait a few more days before it gets another chemo whack.

We drove to the wound care lady and I got my stump wound looked at. She says it looks perfect. She played with the scabs from the stitches. She said the scabs are not ready to come off yet. Maybe next week, but most probably the following week. Only after the scabs fall off by themselves will she start the coning procedure. She guesses 2 to 4 weeks of coning before the stump is ready for its first socket. So we are looking at first of the new year before any prosthesis work can begin. I am ready now!

Coning is a pain, but necessary to get the stump shaped right for the socket.
Here is how to cone a stump.

 The biggest hassle with coning is the stump must be unwrapped, massaged, and re wrapped every 6 hours. The stump will quickly regain a swollen shape if left unwrapped for more than a few minutes.
It usually takes between 2 and 4 weeks to get the stump shaped properly and ready for a socket.
An above the leg amputation has special problems. There is no firm support between the body, and the prosthetic leg. Just a fluid filled stump. Right now my stump looks like walrus. All fat and jelly like. Coning tries to remove most of the moisture, so as to have a more firm place to attach the prosthesis.

One interesting thing I read today, is the recommended medications for phantom pain. They recommend Pregabalin (Lyrica), Tripaline, and Tramadol (Tramacet). I guess my doctor reads the internet, because I am on all three.
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18:30
I just crutched .5km. I was going to do a kilometer, but my shoulder started talking to me, and I did 1km yesterday, so maybe I need a bit of a break. I want to crutch to the blood test place tomorrow. It is about 1.1km from home. Maddie will meet me at the small shopping center for breakfast.

We didn't watch Green Lantern last night, so we will watch it tonight.

Day 107 - Another Lazy Sunday

19:00
Not much happened today.
No thoughts of Angiosarcoma.
I got up about 10:00. We went to a pharmacy and bought a long bandage to wrap my stump.
Hmm...That is about it. That is all the exciting stuff we did today.

Oh, I did another 1 km walk/crutch. I hope to do more long walks before the next chemo.

Oh, and our friends from Texas called. It was good to get caught up on all the animal illnesses, all the ranch going on's, and the new plans in the making.

The Green Lantern is the movie on TV tonight.

We browsed the internet for office chairs. Maybe we will go chair shopping tomorrow. I want a chair with wider wheels for going on carpet, and a wider base for the wheels so it won't tip over as easy, and a longer seat bottom so it will support my stump.

One of my fantasy football players hurt his leg, so I had to swap guys around.

I have had little pain today. Probably the least since the amputation. I hope that trend continues.

Maddie thinks I should tell about a slightly embarrassing moment. After finishing my duties on the toilet, I stood up, balanced on one leg, and tried to pull up my underwear. This is about a zillion times harder to do, than to say.
I managed to pull them up, and stuck my stump through a hole, and then struggled to get the waist part up where it belongs. I finally got it after a big struggle, but half my junk was out one side, and the other half was out the other side, and the part of the underwear that was supposed to support every thing was a tiny strip that was supporting nothing. I did what any male would do in my position, and I yelled for Maddie. She came quickly, but was absolutely worthless as she couldn't stop laughing.
My stump was through the waistband, and my waist was crammed into a leg hole. This meant that the thin waist band was trying to support all the parts that were now, not being supported at all.
Maddie soon had me correctly attired, and all my parts where they should be. She must not have been taught that it is rude to laugh at cripples. :-)

I am trying to get popcorn made for the movie.
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