Day 94 - Another painful day.

08:00
Last night was a series of short naps then pain. I don't know how many times I tossed and turned, and changes positions. I slept well in between, but the sleeps were all short. It seems I looked at the clock every 30 minutes.
 I had a headache this morning, and am sore from yesterday, and have Phantom Pain.
Normal torture is to get information. If someone was torturing me to get the map to the secret treasure, I could see the purpose of this pain. But now I ask  "Why?"
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 18:30
A lazy day. Maddie went shopping and bought tons of veggies. So tonight supper will be a health salad. :-)

This coming week will be a busy one. Monday is a handyman coming to see about making the shower more "one leg" friendly. Then in the afternoon we have a Wound Care Lady Appointment, and an appointment with the Doctor to go over the autopsy of the removed leg.

Then on Tuesday or Wednesday, we collect the new car.

We need to start shopping for a wheelchair :-(. I don't think I can do chemo on crutches. I had problems with balance doing chemo with 2 legs.
I also think the jerks I get are chemo related. Permanent neurological damage from the Paclitaxel. I sure wish we could do a PET scan now instead of after another 8 chemo treatments. I feel that chemo is just a money racket.  There is like a cancer mafia, that makes money out of people "having" cancer, not out of "curing" cancer.

The mirroring is having some affect. My phantom leg has always been stuck in the same 90 angle. During mirroring today my leg was straight for a few minutes. So something happened.
The pain is still there. It hasn't stopped. But maybe more mirroring will change that.
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Day 86 - Mirroring the Phantom Leg.

I awoke after a restless but relative pain free night.
Poor Maddie gets less sleep than I do. I wish she would take her caretaker duties less serious. She needs to have a life other than nursing my pains.
Maddie fixed a great breakfast and all the pills went down.

While we were planning the day's activities, a slow but steady a phantom leg pain grew. Soon it was demanding my full attention.

Phantom leg pain is pain in a part of the leg that no longer exists. With me it usually is a very specific type of pain or feeling. Some times it is as if a sock is wrinkled. Sometimes the missing foot has a shoe that is tied way to tight. Once it felt like I pulled on a sock that got caught on a toenail and tore the nail back. This was very painful.
While in the hospital, the missing foot once felt like it was trapped underneath the bar at the bottom of the bed. In situations like this, even if I move the stump, and hold it up, the trapped foot still feel jammed under the bed frame.
Often massaging the stump brings reality into the equation, and the phantom pain goes away. But as soon as the massage stops the pain starts again.
Usually for me the phantom pain comes in waves. For 10 seconds every minute or so, it hurts.
Phantom pain USUALLY gradually goes away after about 6 months. Sometimes it never goes away, and sometimes it gets worse with time.

This morning it felt like all the toes were broken and pointing straight up. VERY painful. Massaging the stump helped, but the pain was bad. I finally wimped out and drugged up.

The fact that pain pills will decrease or stop phantom pain indicates to me that it is a real nerve problem. Maybe the nerves that used to detect pain were cut, and folded into the stump. So as the stump heals, and affects the blood supply, and therefore pressure on the different nerves.
But the fact that I feel specific scenarios of "damage" to the foot and leg, makes me think it is psychological. How can all the toes on my foot today, all feel broken at the same time. That does not sound like a physical neurological problem.
Bottom line...I don't understand, all that I know, about phantom pain. But I can tell you it is a real pain, and it can control my life when it is bad.

Other than drugs, the most promising treatment is called mirroring.

Mirroring is where a mirror is held at a specific angle to make the missing limb appear to be there. It is actually the reflection of the good leg.

Then by moving BOTH feet at the same time the brain is retaught that it can move the missing leg and foot. Apparently once the brain thinks the foot is real and it can control it, it stops with this phantom act.
I must admit I have doubts about fooling my brain with a mirror.
But I live in a world where clutching at straws is the norm. So I will try this mirroring technique and see if it helps any.

Once all the pain pills kicked in, we quickly drove to the hardware store.
I wanted to buy furniture sliders. Like little pieces of carpet that glue to the bottom of the chairs, so they slide easy on tiles and don't damage the tiles. That will hopefully allow me to move around in a chair a bit easier.
 We also bought hooks to fit in the ceiling to hang big rings to so that I can hang grabbers on the ceiling. I now have a grabber in the bedroom, bathroom, and by the computer.
 We saw some scrap lumber off cuts, and decided to try them as a sort of ramp into and out of the shower. Showers are scary things :-)
I crutched a lot, and had to zoom as the store was closing.

We read an interesting article on the internet about double leg, above the knee amputees. They really have a hard time getting used to prosthesis, and learning to use them. There is much progress made by quickly getting them started on very short legs first. Short legs are easy to balance, and falling is not near the big deal it is with crutches or full height prosthetics. If they do fall, they can get right back up.
They also put on training feet. Funny rounded discs. The advantage is mobility, and strength building long before a normal prosthetic could even be considered.

Next is another pain pill, and supper and tv.
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