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 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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Day 116 - Nineth Chemo, wound care lady

 08:00
 We are up early, and just had a super healthy breakfast. Fried tomato, fried egg, steamed fish and steamed broccoli.
It is a beautiful morning. It is almost like there is no angiosarcoma in the world.
 But the reality is, I am going for chemo in a few hours. So the chemo gods will take the next few days of my life.

I am hoping the wound care lady will teach wrapping today.
When I crutch a lot, my heartbeat goes up, and the stump hangs. It then fills with blood, because there is no vein action in the muscles to pump the blood out of the stump. The swelling seems to be a major cause of phantom pain.
I think maybe the swelling puts pressure on the nerves that have been cut short, and used to go to the foot and lower leg.

The politicians in South Africa are now talking about how the white man is more likely to pay for medical aid for his pet, than for his maid or gardener. They interviewed 4000 middle class families, and found that to be very true.
The most common response from the bread winner of the house hold was that pets are part of the family, and domestic workers are temporary employees.

Oh oh...Maddie wants me to "mush".
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16:00
Just back from chemo, and wound lady, and lunch at the dance studio.
Maddie is busy sorting suit cases to take to George.

Chemo was normal. We both chatted to other people. It is interesting to hear other cancer stories from people. We then chatted to the oncologist.  A very nice Indian lady. She explained the need for a longer chemo treatment. They are pleased with the way chemo reduced the tumors in the leg, and they want to hammer the ones that may have escaped into my body.

We then went to the wound care lady. She was very happy with the stump wound. She spent a long time cleaning it up and removing LOTS of dead skin and scabs. She said that I should never remove a scab. They must all fall off on their own.

 

 

Note: I am NOT holding a pumpkin (or a football)

Another Note: It has been as severely abused as any body part can be, so it is NOT smiling. I know it looks like it is smiling, but it is NOT.

The doctor came by and also looked. He said it looks good, and to no longer bandage it, just let it open to the air. He also said to shower with it open, and wash gentle with soapy water. 

The Wound Care Lady said that when I see her next on Dec 15th, we should be able to pass me off to the prosthesis guys for coning to start. 

The Doctor said that the coning should be done by early January, and I should be on a prosthesis before I am off chemo the end of February. That would be great. :-)

Then when I finish with chemo, and am on a prosthesis, Maddie and I will have to start serious planning for a trip stateside.

On the way home, I showed Maddie a cute little cafe I found. It is almost half way to the big mall, so I used to walk past it many times, and would often stop in for coffee. It is a dance studio. We sat, ate lunch, and watched the people learn to dance. One lady student today seemed to have two left feet. 

But I guess I shouldn't say any thing, because I have NO left feet.

Once again we are up way to late.

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