Monday, 12 October 2015

Day 67 - Talks with the surgeons

Wild awake at 2:21.
I decided I need some hot chocolate. Nice, with hot soya milk.

It is Sunday evening in the USA, and my Fantasy Football team is kicking ass WooHoo! So far 112 for the Kgwedi Super Dog team vs 33 for the other team.


I need to change my thinking about this whole sleep thing. It just IS what it is. I no longer sleep like other people do, I sleep like I do.
02:30, drinking hot chocolate and reading my book, is just the way it is. It isn't wrong, it just IS.
Of course I will have big problems when I try to interface with the real world :-)

That hot chocolate was great, so I just decided to have another one.
I am sure that if I search the internet enough, I will find a web site praising the cancer fighting qualities of hot chocolate. If I can't find one, I'll write one myself, just because I can. To quote Ayn Rand:
"The question isn't who is going to allow me; it's who is going to stop me."

Sure enough:
http://beatcancer.org/2014/02/top-7-dark-chocolate-health-benefits/
http://www.livestrong.com/article/14363-5-things-you-need-to-know-about-chocolate-and-cancer/
http://www.dailymail.co.uk/health/article-2091627/Eating-chocolate-stave-bowel-cancer-say-scientists.html

That is one of the problems with doing research for Angiosarcoma on the internet. There is a farrago of pros and cons for every treatment, every symptom, and every cure. Sometimes, reality, or the truth, isn't even in there anywhere. I remember my oncologist telling me "Don't read blogs, and don't blog." Obviously I don't follow her directions to the letter.

Now 2 games of Sudoku later, and I will try sleep again. It is 03:37
--
14:00
Just back home from talk with Lady surgeon. She talked yesterday to two different angiosarcoma surgeons. Both said that if biopsy shows Angiosarcoma, and there is no metastasis, then remove all the cancer as soon as possible. Both looked at PET scan and both said amputate soonest.

The one is at a hospital far away (+-40km on other side of city), and the other is at a hospital only 8km from my house. We talked to the one at the hospital close. He opens at 09:00 in the morning, but said he will see me at 08:30 tomorrow morning, and to bring all my PET pictures, and biopsy results, and blood test results.

The Lady surgeon I talked to today is a very good soul. I like her. She is exactly how I think a Doctor should be.
The surgeon tomorrow is a cancer orthopedic specialist. He has shared surgery before with the Lady surgeon I like.
The Lady surgeon says that she would just be in the way if an amputation is for sure going to happen. Her expertise is in removing cancer with minimum damage to the surrounding body.

The orthopedic surgeon said that he should start a car dealership, as many of his patients trade in their manual transmission cars for automatic transmission cars. :-)

Since the only paper or pictures that I don't physically have are the ones from the lymphogram, I would try to get a copy of those. So before leaving the hospital, I decided to go to the biopsy surgeon, and see if he had copies for me. On the way there, I got lost. (It is a big hospital.) :-)
 I accidentally walked past the place that did the lymphogram. I went in, to ask, if they knew where I could get copies. There, in a chair drinking coffee, was the lady that had done my lymphogram. I asked her, and she said that if I was not in a hurry, she would retrieve and copy everything for me. I sat for an hour, and she brought all the pictures, and the results. That was very nice of her. Thank you lady.

They injected a toxic dye between the toes. Then they took pictures every once in a while to see how the dye moved through the lymphatic system. You can see the way the dye moves up the legs, how it stops below the knee on the left leg, and how it moves freely up the right leg. Also notice that after 3 hours the dye from the right leg is all in the groin lymph glands. There is no dye in the left groin lymph nodes.
 This complete lymphatic blockage may have helped to prevent the spread of the cancer into the lymphatic system.

As I was walking to the beetle, I decided to find exactly where the orthopedic surgeon's rooms are for tomorrow morning's appointment. I found them, and told the nice receptionist, that I would see her tomorrow. She smiled, asked if I was Mr. Wise, and said that she normally gets to work at 08:30 but tomorrow would be there from 08:00 just to be there when I arrive. That was a nice thing to hear. Some people do care. :-)
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Sunday, 11 October 2015

Day 66 - Nothing happened today


I am playing OpenTTD. It is a railroad tycoon game on the computer. Very addictive, but need to quit now...NOW !!

I did nothing today.
I read lots in my book.
I cleaned the solar panels.
 I walked to shop and bought bananas. That was the most exciting part of my day.
I shaved my head, and my face. It is the first time in a week I have felt enough stubble on my face to need shaving.

I chatted lots to my friend in Texas. Mostly about them getting a new truck for the ranch. We also talked about the Tex the long horn steer. He is so old and sick. They called the vet, but I think the vet is amazed that Tex is even still alive. :-(

I have an appointment to see the surgeon tomorrow at 11:00. I may go early and eat breakfast at the small restaurant at the LifeStye building. I like it better than the big restaurant at the main hospital. I suspect that she will want to take the leg off, but she may have another idea. She got to talk with her buddy that has lots of Angiosarcoma experience. My mind spins at all the options, and the repercussions of each of those options.

I did more with my web page, and put in links from it, to my blog.

Even I am bored reading this blog.
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Saturday, 10 October 2015

Day 65 - About my blog

I slept 12 hours straight last night. Only up twice to pee.

After such a good sleep I decided to do a long walk to the mall. I made it about half way there and faded. There were two restaurants nearby, but both were closed. So I rested at a petrol station and drank a large orange juice. Then walked slowly home. The total distance was 4.2 km. and it took just over 3 hours. I got home and fell into bed.
 I slept for 2 hours, and now I have my normal problem of waking up just in time to take a sleeping pill to go to bed. Duh!!

My blog was initially intended for me to "bare my soul" to myself. Then I included some friends that I thought, would like to share my cancer journey with me. I found solace in others hearing my story.

Two very good friends have been down the cancer road. Both lost their spouses to cancer. They supplied much wisdom to counter my ignorance. For that I will be forever grateful.

There is too little information on the web about Angiosarcoma. My blog may not always be the greatest cancer advice, but I would sure have appreciated reading it when I first got diagnosed. It would have told me so many things that I had to learn the hard way.

So, I have decided to try to improve readership of the blog.
 I have built a Site-map, and installed it in my blog header. That will tell Yahoo, Google, and Bing about different keywords in my blog. This allows search engine robots to catalog the different main words like "angiosarcoma" and "cancer".
 I also made a canonical entry to be added to the meta data on my http://kgwedi.com web site.
I have also included links to the blog from my web site.
There is now at the bottom of each blog, an icon to send the blog link to an email address if you so desire.

I have Google Analytics now showing me lots of information to improve readership.



 So feel free to tell anyone about the blog. Especially anyone you feel will get some use from it.

http://www.blog.kgwedi.com

or my website

http://kgwedi.com

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Friday, 9 October 2015

Day 64 - Lots of naps

I slept well and got up at about 08:00. Showered and dressed my leg. Then about 10:00 I had a fade, and took a two hour nap.

I decided to buy a new hat. With my bald head, the back of my head gets sunburned wearing a baseball cap. So I walked to the local camping store, and bought a typical wide brimmed hat. One size fits all. Inside the brim is an elastic cord that you adjust for the size of head. It seems to work.

I walked home, and took a 2 hour nap.

I just had a fruit salad, but I crave some real food, so am microwaving some Pasta Alfredo. So unhealthy. Bad Dan.
The pasta packet says best before Mar 2010.

 With the naps, I slept 14 hours so far today, and I'll be going to bed soon. I will still take a sleeping pill.
I hope to be in bed by 21:00

Pasta has no taste. Me or the pasta? So I dumped in lots of Turmeric, Cayenne pepper, garlic, and mixed herbs. Now it tastes like mixed herbs with garlic and Cayenne pepper. I should have stayed healthy and had a pear.
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Thursday, 8 October 2015

Day 63 - Bad Start to the Day

01:25
I am so tired. I can barely walk, but I can't sleep.
At first I thought it must have been something in the health salad I ate. Then I thought maybe the sleeping pill,  but I think the sleeping pill is working well. I am stupid tired, and want nothing more than sleep. I have been in bed since around 22:00. I just lay there. I also have the twitches. About every minute or so my leg jerks and I roll over. When I lay still, it feels like a huge amount of swirling black smoke is trying to break out of my body.

I now think it must be the chemo. I have drank lots of water. Maybe what I need is a long walk. At 01:30 I would probably get shot.
 My left hand just would not type...I have to use my right hand for all my typing. It feels fine, and will pick up stuff, but when I try to aim for a letter, it does not move. Like my brain can't do fine control of my left hand.

Maybe I should now try to meditate.
My left hand will start and stop the fan. That is pushing a button on the fan. Why when I try to type a "g" my left had just hovers over the keyboard and will not move to the g? But I can work the light switch with my left hand.
--
03:33
Still wide and wild awake. Maybe I am battling because of not including one of the  chemo side effect drugs during the chemo. I'll have to check.
My left hand now works OK.
--
12:00 Noon
I just got up. I slept well from 5 till now. I am steaming broccoli and fish for breakfast.
I have been cleaning up a big mess I made last night. At around 4 this morning, I went to the sink in the kitchen and got a glass of water. I turned around to head for bed, and turned left instead of right and walked hard, straight into the kitchen cupboard. A bag of coffee beans fell off the top onto the floor. There are a lot of coffee beans in a one kg bag.
I once walked from Maun to Shakawe in Botswana by myself. I carried everything. It took 14 days. Long before GPS. Just a compass. Now I can not find my way to the kitchen door from the sink.

Chemo sucks.
Cancer sucks.
Angiosarcoma sucks.
Getting old sucks.
Being sick sucks.
Even remembering the past sucks.
I try to think of pleasant things, so I listen for the birds, But I only hear dogs barking at the trash men.
Trash men suck.
Dogs suck.
Even the birds won't sing. Birds suck.

I sometimes think I should have someone like Maddie here to help me. But help me what? Find the kitchen door? Pick up coffee beans? I think that rather than someone I care about, I should get my worst enemy, and have them stay with me.  Maybe Obama, or the NSA will help me pick up coffee beans.
---
My surgeon just called. She wants to see me on Monday to talk about leg surgery. She also wants to refer me to her friend that has lots of angiosarcoma surgery experience. That is good news for me. I will soon have 3 doctors on my side. An oncologist, a surgeon I like, and a surgeon with extensive angiosarcoma experience.
--
20:00
My friends in Texas just sent me an SMS. They say their pet long horn steer is old and not eating. Tex was a huge, strong, beast of an animal.
Here is Tex and Maddie a few years ago:

Maddie is on the right, Tex on the left. :-)
My friend is going to clone Tex. That is so cool. Tex is a wonderful animal.
But now Tex is skin and bones.  He eats so slow now that he can't get enough food into himself. He is old, and sick.
It is a funny world, when I can commiserate with a longhorn steer, better than I can with 99.9% of people on earth.
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Wednesday, 7 October 2015

Day 62 - At 5th Chemo

Once again in the chemo chair. All seats are full, but most IV bags look almost finished.

I just talked to oncologist lady.
Since purpose of this chemo is to prevent spread, and prepare for the operation, she wants to continue with chemo for the original 9 treatments.
She told the surgeon that, and the surgeon has the final say.

I actually have the final say. I can refuse chemo at any time, and I can just tell the surgeon to operate. The patient has the final say in all matters while he is of sane mind.

 She also said that she reduced the amount of chemo last week, and I felt
much better so she will try a tiny bit more than last time. The more the
better, but only if I can still have a life. Apparently even 100mg should the stop spread, and of new tumors growing, but more is needed to reduce the size of the tumors for the operation.

My blood test shows white blood cell count is up just barely into acceptable range, and red blood cell count is up quite a bit, but still below the minimum.

 165 mg Paclitaxel was a bit to much for me I think. 135 mg was not to disruptive. I'll see what she does this time.
She also says that to get an accurate PET scan requires no chemo for 2 weeks before the scan.
This is chemo 5. So according to oncologist lady, the PET scan should only be in 6 weeks.

I should get to talk with the Surgeon lady tomorrow, and will know much more.

Regarding the big rugby game between USA and South Africa. USA - 0, SA - 64. Hmm..64 to Nuthin. I guess you can't get more of an ass kicking than that. South Africa may be better at Rugby that the USA, but America is so much better at bombing hospitals in third world countries. If causing pain for innocent strangers in foreign lands was an Olympic event, the USA would get the gold.

I am getting 132mg, but only one bag of the stuff to reduce side effects.
So maybe it will react with me stronger....maybe not.


They even have a sweatshirt for Angiosarcoma:

 Kick AS
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Tuesday, 6 October 2015

Day 61 - Talk with Maddie

I slept well and long. I took a pill at 23:00, and up before 09:00.

Tomorrow is chemo. :-(

Today I went and gave the blood test lady some blood. I will collect the results tomorrow before going to chemo.

I got the seat belt parts for the beetle. They work, but it is a make-do system. Not perfect.

I shaved my head. Before, I had just used the clippers to make a very short stubble, but then I just get a zillion very short hair all over my pillow. I haven't shaved my face for many days. It doesn't need it.

Maddie called and we talked. She will come and stay with me after the operation. Unless I am sure I will be able to walk and drive. But there are so many variables to the operation.
1. Will further chemo make the tumors smaller, and therefore require less muscle removed. If so then I may still need a few more weeks of chemo before the operation.
2. If they plan on removing all the tumors as shown on the PET scan with the surrounding 5cm. Then that will completely remove most of the leg muscles. My ankle is only 7 cm across. So a tumor near the center of my lower leg will remove ALL the muscle and skin from one side of the leg, completely to the other side, leaving only the bone. I can't see that being any good. Or any fun either.
3. If the leg will be useless, then they might as well remove it.
4. If there is any sign of tumor nearer the knee then the amputation will be above the knee. That would suck.

 Always more questions than answers.

So...
Maybe the operation will be soon, maybe not. 
Maybe it will remove most of my leg muscle, maybe not.
Maybe it will be a "simple" below the knee amputation, maybe not.
Maybe I'll still be able to walk, maybe not.
Maybe I'll be able to drive, maybe not.
Maybe the cancer will spread, and this operation will have been a waste of time, of which I will have little left.......or...Maybe not.

F.U.A.S.
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