08:30
Today is day 99 since my angiosarcoma diagnosis. I didn't think I would live this long.
We both slept well...except...at 02:30 I started feeling cold, and realized the bed was wet. I had peed in a bottle about 20 minutes earlier, and I had made a big mess. I used half a box of Kleenexes trying to blot up the wet, and then decided to wake Maddie up.
She did all the proper stuff like using towels and cleaning me and the bedding as best as she could. This morning she is washing all the bedding, and doing a vinegar and baking soda repair on the mattress. All the web sites for how to remove urine from a mattress, are for mothers with small children. I bet that is how Maddie feels about now.
--
10:00
Maddie is in a curtain cleaning mood. She asked when the kitchen curtain was last washed. I told her it was actually a dogs blanket, and was probably washed when Kgwedi died in 1998. Now she thinks I am a lousy house keeper. Duh!
--
12:00
I just did my first "project" since amputation. I bolted an ax handle to the side of my bed. It is standing straight up, to be used as an aid in getting out of bed, and standing up.
I used to get out of bed by raising my legs, and moving them to the side of the bed. The weight of them would help me sit up. Now my one leg doesn't weigh enough to do that. The ax handle is something strong I can pull on to sit up in bed, and to hold onto while getting in, and out, of bed.
I like strong things to grab. I seem to always feel insecure, and unbalanced.
--
14:00
We drove around shopping for a good office chair with rollers. We didn't find a good one. We then went to a steel manufacturing place. The people there were nice and helped design and build a bar for the shower. It will be a steel plate that screws onto the wall of the shower. Welded onto it will be a square pipe with the top surface cut off. Then another square bar can fit into it. giving me a strong bar from side to side in my shower. Hopefully with this I can lift myself over the lip around the shower. This shower problem needs to be fixed once and for all!
--
20:00
I crutched .5 kilometers again this evening. I have to keep my leg bent. I am so afraid of hurting the knee.
The original Die Hard movie is on tonight.
--
Friday, 13 November 2015
Thursday, 12 November 2015
Day 98 - New Car, Bad knee
We were up early because we had to collect the car. So last night I short dosed my Lyrica. Of course that meant I laid in pain till midnight. I took an extra Tramacet.
We have such a long list of things to do. We went to the car dealer, and poor Maddie had to sign about a zillion papers, but we drove away in the new car and the beetle. We went straight home to drop off the beetle, then both went in the Atos to do stuff on the list.
It even has mag wheels and bigger tires. :-) It is a 2005 Hyundai Atos Prime. 87,000km. The seat base is high, so is easy for me to get into and out of. It has an automatic transmission.
We went to get me a new medical aid card. There was a small restaurant in the building, and we decided to have lunch. While Maddie was at the counter, I dropped a crutch. There were many people in the line, and the crutch made a bang when it hit the floor. All the people just looked at it, except one person. A fat, black woman with screwed up hair, and lots of piercings. She came straight over and picked up the crutch and asked if I was OK. I would have guessed her to be the last person to help. It shows that good souls sometimes hide.
We then went to the prosthetic place to get some of the American style crutches. The guy brought them out and when he started to fit them we realized they were way to short. Made in China where people are smaller. He said he would order some extra large ones for me. Then Maddie mentioned we were going to go rent a wheel chair for my chemo session. The guy said that since I was going to get my prosthesis from them, they will loan me a wheel chair till the prosthesis is fitted. Cool. That saves us R800 a month. :-)
The wheel chair is a ratty old one, but it works, and folds up into the back of the Atos.
We then went shopping for an office chair. I want to be able to sit and zoom around the house. So a chair on wheels would be great. We didn't find any good ones.
Then we went to the mall to look for a small table on wheels. Like a serving table, or a TV table. I was happily crutching along and my knee went crunch and collapsed. I fell, but onto the crutches. A lady helped me up and I leaned on a display. A sales person came and asked if I was alright. I asked if she had a wheel chair, and she said yes and zoomed off. Maddie was soon there, and we waited. My knee hurt real bad. They removed the cartilage in 1973, and that knee has never been great. Now it is vital to my way of life. I did the rest of the shopping sitting in the wheelchair. In that store they had many office chairs on wheels. We may buy the one.
We then headed home. My knee needs to be watched, and kept healthy. It is sore and swollen. :-(
--
20:00
Maddie just compared our spreadsheet of times and pills taken, with my blog records of how well I slept. She found a very close correlation between a certain pill count and timing, and a good night sleep. So I am trying that tonight. I sure would like a good night sleep.
I added to the pills an anti-inflammatory to keep the swelling down in my knee.
--
23:00
We have such a long list of things to do. We went to the car dealer, and poor Maddie had to sign about a zillion papers, but we drove away in the new car and the beetle. We went straight home to drop off the beetle, then both went in the Atos to do stuff on the list.
It even has mag wheels and bigger tires. :-) It is a 2005 Hyundai Atos Prime. 87,000km. The seat base is high, so is easy for me to get into and out of. It has an automatic transmission.
We went to get me a new medical aid card. There was a small restaurant in the building, and we decided to have lunch. While Maddie was at the counter, I dropped a crutch. There were many people in the line, and the crutch made a bang when it hit the floor. All the people just looked at it, except one person. A fat, black woman with screwed up hair, and lots of piercings. She came straight over and picked up the crutch and asked if I was OK. I would have guessed her to be the last person to help. It shows that good souls sometimes hide.
We then went to the prosthetic place to get some of the American style crutches. The guy brought them out and when he started to fit them we realized they were way to short. Made in China where people are smaller. He said he would order some extra large ones for me. Then Maddie mentioned we were going to go rent a wheel chair for my chemo session. The guy said that since I was going to get my prosthesis from them, they will loan me a wheel chair till the prosthesis is fitted. Cool. That saves us R800 a month. :-)
The wheel chair is a ratty old one, but it works, and folds up into the back of the Atos.
We then went shopping for an office chair. I want to be able to sit and zoom around the house. So a chair on wheels would be great. We didn't find any good ones.
Then we went to the mall to look for a small table on wheels. Like a serving table, or a TV table. I was happily crutching along and my knee went crunch and collapsed. I fell, but onto the crutches. A lady helped me up and I leaned on a display. A sales person came and asked if I was alright. I asked if she had a wheel chair, and she said yes and zoomed off. Maddie was soon there, and we waited. My knee hurt real bad. They removed the cartilage in 1973, and that knee has never been great. Now it is vital to my way of life. I did the rest of the shopping sitting in the wheelchair. In that store they had many office chairs on wheels. We may buy the one.
We then headed home. My knee needs to be watched, and kept healthy. It is sore and swollen. :-(
--
20:00
Maddie just compared our spreadsheet of times and pills taken, with my blog records of how well I slept. She found a very close correlation between a certain pill count and timing, and a good night sleep. So I am trying that tonight. I sure would like a good night sleep.
I added to the pills an anti-inflammatory to keep the swelling down in my knee.
--
23:00
We watched a movie. Sahara.
--
Wednesday, 11 November 2015
Day 97 - Grrr!
I took only 1/3 of the sleeping pill last night, and got into bed at 21:00. I woke up at 09:00 ate breakfast, then napped till noon. I ate lunch, then slept till 15:00. A complete wasted day.
--
21:30
I am now getting ready for bed after a scary shower. I needed a shower. I crutched half a kilometer again this evening.
When Maddie goes back home, I can see me showering once a month, or when ever the dogs howl or the neighbors complain.
I joined Google+ to see what angiosarcoma sites were there. We found one story that seems the epitome of angiosarcoma stories.
She had a tumor, and it was biopsied and was angiosarcoma. She did full chemo, radiation, after the surgery. She had CT scans every 3 months and was clean for 8 months. She had a scan that was clean. A month later she had pain, and they did a PET scan. Tumors were now present in her lungs, liver, thyroid, and legs. She died a month later.
One month clean, one month tumors, one month dead. That is angiosarcoma.
One reason I am so sleepy is the Lyrica. Many people on the internet hate it because it does work on nerve pains, but takes away your life by making you so tired and sleepy.
I have read one full page in my book in the last few days. I am stupid, and sleepy. Pain or stupid sleep. That is my choice.
If someone gets cancer, and they do radiation, chemo, and surgery, and the patient dies, I would think that they would figure out that cut, burn, poison, does not work. "Well, that didn't work last time, so lets try the exact same thing again." Duh! That is the definition of insanity.
I fear that money is the main factor in cancer treatment. If Doctors were paid by curing patients, I bet a lot more cancer patients would be cured. Now Doctors are paid by how long they can keep you alive and on treatment. Cure equals no treatment. No treatment, no bucks.
Grrrr!
--
--
21:30
I am now getting ready for bed after a scary shower. I needed a shower. I crutched half a kilometer again this evening.
When Maddie goes back home, I can see me showering once a month, or when ever the dogs howl or the neighbors complain.
I joined Google+ to see what angiosarcoma sites were there. We found one story that seems the epitome of angiosarcoma stories.
She had a tumor, and it was biopsied and was angiosarcoma. She did full chemo, radiation, after the surgery. She had CT scans every 3 months and was clean for 8 months. She had a scan that was clean. A month later she had pain, and they did a PET scan. Tumors were now present in her lungs, liver, thyroid, and legs. She died a month later.
One month clean, one month tumors, one month dead. That is angiosarcoma.
One reason I am so sleepy is the Lyrica. Many people on the internet hate it because it does work on nerve pains, but takes away your life by making you so tired and sleepy.
I have read one full page in my book in the last few days. I am stupid, and sleepy. Pain or stupid sleep. That is my choice.
If someone gets cancer, and they do radiation, chemo, and surgery, and the patient dies, I would think that they would figure out that cut, burn, poison, does not work. "Well, that didn't work last time, so lets try the exact same thing again." Duh! That is the definition of insanity.
I fear that money is the main factor in cancer treatment. If Doctors were paid by curing patients, I bet a lot more cancer patients would be cured. Now Doctors are paid by how long they can keep you alive and on treatment. Cure equals no treatment. No treatment, no bucks.
Grrrr!
--
Tuesday, 10 November 2015
Day 96 - Thoughts on Doctor's report
I took a new fancy sleeping pill last night at 21:30. I suffered in pain till 01:15 when I took a pain pill and fell asleep about an hour later. I slept til 09:00.
That sleeping pill effects hang on, and I was very drowsy and napped lots. till about 15:00 this afternoon. Lots of phantom pain. It just won't stop.
I have been in an email conversation with my surgeon. He says the biopsy report was done by 2 independent Doctors, on 5 separate samples. He believed the initial biopsy report was correct. "Poorly differentiated epithelioid angiosarcoma". I tend to agree.
If the histopathy is also correct in saying there is currently no angiosarcoma present in the removed leg, then obviously the methods used by me and the oncologist were "curing" angiosarcoma. That process should be made public with a paper, or some means to notify other angiosarcoma patients and Doctors .
What is also needed, is a means of confirming the state of the disease in the leg right before amputation, instead of relying on old data. Like a cross between a lymphogram, and a PET scan. Something quickly done the day of the amputation to confirm the disease state of the leg.
We are having a heat wave. High today 36C (97F) and the low tonight will be 27C (81F). No rain in sight. The weekend Saturday will have 17% chance of light rain. That really means zero rain.
With the car, we opted for the full warranty/guarantee extra. R5000 we weren't sure it would be worth it, but when they sent the car to road worthy inspection, it flunked because of bad shock absorbers. So the dealer is replacing the set of shocks at his cost. So we already got back R2000 of our R5000. :-). We should collect the car tomorrow by 15:00.
--
19:00
I just walked half a km in 21 minutes. Am very tired.
We read on the internet that the sleeping pills should be taken around 18:00 so that they will be full strength by 22:00. So I took one at 18:30, and I am now so sleepy, and Maddie just made a super supper. Yummy ...fish and veggies.
--
That sleeping pill effects hang on, and I was very drowsy and napped lots. till about 15:00 this afternoon. Lots of phantom pain. It just won't stop.
I have been in an email conversation with my surgeon. He says the biopsy report was done by 2 independent Doctors, on 5 separate samples. He believed the initial biopsy report was correct. "Poorly differentiated epithelioid angiosarcoma". I tend to agree.
If the histopathy is also correct in saying there is currently no angiosarcoma present in the removed leg, then obviously the methods used by me and the oncologist were "curing" angiosarcoma. That process should be made public with a paper, or some means to notify other angiosarcoma patients and Doctors .
What is also needed, is a means of confirming the state of the disease in the leg right before amputation, instead of relying on old data. Like a cross between a lymphogram, and a PET scan. Something quickly done the day of the amputation to confirm the disease state of the leg.
We are having a heat wave. High today 36C (97F) and the low tonight will be 27C (81F). No rain in sight. The weekend Saturday will have 17% chance of light rain. That really means zero rain.
With the car, we opted for the full warranty/guarantee extra. R5000 we weren't sure it would be worth it, but when they sent the car to road worthy inspection, it flunked because of bad shock absorbers. So the dealer is replacing the set of shocks at his cost. So we already got back R2000 of our R5000. :-). We should collect the car tomorrow by 15:00.
--
19:00
I just walked half a km in 21 minutes. Am very tired.
We read on the internet that the sleeping pills should be taken around 18:00 so that they will be full strength by 22:00. So I took one at 18:30, and I am now so sleepy, and Maddie just made a super supper. Yummy ...fish and veggies.
--
Monday, 9 November 2015
Day 95 - Strange news from the Doctor.
I did not sleep all that well. Actually I slept well from 1:30 til 05:30. Not enough.
The guy that was supposed to come by and quote on the shower mods never came. So typical South African.
My hair is growing back, but it is white.
Maddie drove us to the Doctor and Wound Care Lady a bit early. I had a fruit salad at the small restaurant.
At the Doctor's office, the Wound Care Lady took off the bandages, and the stump looks very good. No redness anywhere. The Doctor came and looked at it and was pleased.
Then the Doctor talked about the histopathy report. Histopathy is like an autopsy, except it is not on a dead guy, but on a removed part of a living guy.
The histopathy report on the removed leg is all big Doctor words. The last sentence of the report was the shocker.
" There was no evidence of residual angiosarcoma within the tissue examined."
At first this sounded like good news, then I remembered the many times the surgeon and the oncologist told me that chemo will NOT kill angiosarcoma tumors.
If there is no residual angiosarcoma, then there never was any angiosarcoma.
The original biopsy report said there was angiosarcoma.
The PET scan report said there was angiosarcoma.
The histopathy report says there is no evidence of residual angiosarcoma.
Chemo does not kill angiosarcoma.
Now I ask...Was there ever any angiosarcoma? If so, then how did it disappear? If not, then why am I scheduled for chemo?
As usual, more questions than answers.
The car guy says we should be able to collect the car tomorrow afternoon.
This afternoon, I crutched 500 meters. It took 21 minutes. I was exhausted. I really need a shower. I don't know how long it has been since I have had a good work out.
--
The guy that was supposed to come by and quote on the shower mods never came. So typical South African.
My hair is growing back, but it is white.
Maddie drove us to the Doctor and Wound Care Lady a bit early. I had a fruit salad at the small restaurant.
At the Doctor's office, the Wound Care Lady took off the bandages, and the stump looks very good. No redness anywhere. The Doctor came and looked at it and was pleased.
Then the Doctor talked about the histopathy report. Histopathy is like an autopsy, except it is not on a dead guy, but on a removed part of a living guy.
The histopathy report on the removed leg is all big Doctor words. The last sentence of the report was the shocker.
" There was no evidence of residual angiosarcoma within the tissue examined."
At first this sounded like good news, then I remembered the many times the surgeon and the oncologist told me that chemo will NOT kill angiosarcoma tumors.
If there is no residual angiosarcoma, then there never was any angiosarcoma.
The original biopsy report said there was angiosarcoma.
The PET scan report said there was angiosarcoma.
The histopathy report says there is no evidence of residual angiosarcoma.
Chemo does not kill angiosarcoma.
Now I ask...Was there ever any angiosarcoma? If so, then how did it disappear? If not, then why am I scheduled for chemo?
As usual, more questions than answers.
The car guy says we should be able to collect the car tomorrow afternoon.
This afternoon, I crutched 500 meters. It took 21 minutes. I was exhausted. I really need a shower. I don't know how long it has been since I have had a good work out.
--
Maddie's Thoughts
It's time to put my thoughts into
words again. I haven't done that for a long time, and so much has
happened in the meanwhile. I've arrived here on 22nd of
October, the day before Dan's life changing operation.
My first few days were all about
hospital visits, cleaning house etc. Since Dan came out of hospital,
a few things changed - I suddenly had a 'patient' to take care of
and had to start practising my 'nursing skills'. :-) As the time
passes, I realise that I'm very willing, but I don't always have the
necessary skills or knowledge to help our dear friend when he's in
pain, or when the black dog wants to drag him down into a hole.
Fortunately that doesn't last for too long, as he's able to pull
himself together again when the pain has subsided. Even if I can't
do anything more, I'm always there to listen whenever he wants to
talk. To me, it seems if it helps if his mind is occupied with
something, like discussing projects, watching a hilarious comedy on
TV or physically challenge himself by walking in the street, climbing
stairs at the big mall, fixing a fan or fiddling with something or
other in the shed outside the house.
Today we discussed our schedule for
this coming week. We both look forward getting the new car, maybe
Tuesday. It has an aircon, which is a HUGE plus during the hot
summer months. Dan will be able to drive himself, so nothing will
stop him from driving to Communica, shopping for parts for his table
on wheels to use around the house. We'll still have the beetle, if I
need to go somewhere and Dan is out with the Atos. Of course I'll be
jealous of him driving the cute little Atos :-) so maybe we'll make
turns to go out, if not together. I think driving his own car will
be good for his mental state and his soul – a good start to be
independent again.
We talked about “This too shall pass”
… It is a phrase that should bring hope, that whatever bad
situation you're in, will also pass with time.
Dan feels that some things will never
change for him – never again will he be able to jump in a
Corvette and race his friend in another Corvette to a nearby town, or
the two of them go for a speed race on the fast motor cycles. The
thought of that made us both sad.:-( We then started talking about
the prosthesis that will give so much more quality of life back to
him, and we both cheered up again. All in good time, we decided.
Trying to speed things up and regret it afterwards, is not the way to
go.
If we've got our dates correct, the
last chemo session will be 30th December. Then two weeks
after that the PET scan. We dream of flying out to Florida to see
some of Dan's friends, from there to Washington to visit his brother.
Then fly from there to Texas for a visit to some very wonderful
friends and spend time on their ranch. We realise that so much
depends on the outcome of the PET scan, somewhere in January, but for
now nothing is stopping us from dreaming, hoping and being positive.
---
Sunday, 8 November 2015
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?"
--
18:30
A lazy day. Maddie went shopping and bought tons of veggies. So tonight supper will be a health salad. :-)
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?"
--
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.
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.
--
The pain is still there. It hasn't stopped. But maybe more mirroring will change that.
--
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