Day 26 - Pet scan Prep

I was tired today. I napped a few times. I think I am dehydrated, so I have been drinking lots of water.

I am not a distrustful person, because even though some people will stab you in the back, they can be trusted to stab you in the back. Trust to me, has always denoted reliability. Some people are reliably mean, or conniving.

Do I trust Doctors? Yes, I trust them to put their children first, and to make enough money to keep their family safe and healthy. I trust them to put their children through University. I trust them to put their families before their patients.
This is why, when I am diagnosed with an aggressive, and quick spreading cancer, that the doctors go away for a long weekend. I also trust that if they cure me quick, and make me very healthy, they are denying themselves of income. In the financial and political world, conflict of interest is immoral and criminal. With the medical industry it is just the way things are.
Today I was supposed to see the Wound Care Lady. ( WCL). But just as I got to her place she called and cancelled. She rescheduled for tomorrow. She wants to dress my leg every few days, except when she is busy, then she says every week is OK. My leg dressing frequency is dependent on whether she can earn more doing me, or not doing me, at that time.

Tomorrow is a weird day for me. The procedure before a PET scan is different from something like surgery. They have many things that I need to do the day before the scan.
No fruits, cold drinks, sugars, or carbohydrates.
Allowed is protien, and some veggies. No carrots, pumpkin, corn, sweat potatoes, or peas.
Salad is OK.
Nothing after 22:00.
No exercises.
Coffee or tea is ok without sugar or cream.

So I actually don't have to change much. Today I ate:
 Black coffee, and water, an egg and fish for breakfast, salad for lunch, and broccoli and fish for supper.
All that makes tomorrow different is the WCL , and no snacks.

Day 25 - Lazy blog

Today has been a lazy, do nothing day.

I was reading about these I think they are cool. I would love to do something like this.
http://www.daisyfresh.co.za/index.php/home-hydroponic

Spring is coming here. Birds are singing, and there are little green leaves starting on the trees.

I want to add another solar panel to my roof. Maybe 2. But only after I find out what the story is after my PET scan. My whole future is dependent on that.

My scan is at 07:30 on the Wednesday the 2nd of Sept. They say 2 or 3 days for the results. So I guess it will be Monday 7th before I find out anything.

I am optimistically signing up for NFL Fantasy Football. I did it last year, and it was fun. I didn't have a clue, and did everything as a managed team. This year I am going to do some research and select players I don't want, then have the NFL computers pick my team.

I read more about CAR T-cells. That seems to be the most perfect of treatments. All I need is a few million dollars.

A lazy day, and a lazy blog.

Day 24 - Don't Panic, stay calm

I woke up tired this morning.
A month ago I would have though I was getting a cold or the flu. Now I think CANCER!. It is making me weak! Don't doctors always ask if you have any fatigue, or weight loss.

I have lost 3 kilograms in 2 weeks. I am eating very healthy, and walking lots. But I look at the scale and think CANCER! it is eating me up, and using all my nourishment!

I need to not pay attention to myself. I am an over dramatic person with a vivid imagination. I have met the enemy, and he is me.

The latest Popular Mechanic has an article on T-cell treatment for cancer. It seems that when they get it right, it cures cancer. A 10 minute treatment has a patient cured in about 10 days. Not just remission, but cured.  Sometimes it kills the patient. That is a bad side effect. :-)

There seem to be 5 different ways to treat cancer. Surgery, chemo, radiation, cell targeting, and now CAR T-cell immunology.
The problem seems to be if your doctor is a surgeon, guess which treatment he will chooses?
 I think that the best treatment potentially is the T-cell treatment. It is not a cut, burn, poison therapy. It is a cure.
But the powers that be, in the Medical Aid conferences are the one to decide what treatment I will get.

Perhaps the best thing for me is to eat healthy, and stay active. Let my immune system do it's job.
The immune system will kill cancer cells, but many cancer tumors fake the immune system into leaving them alone. After all even a cancer cell, is a part of my body.  We can't have immune systems killing off healthy body parts.

I walked about 6 kilometers today, and have eaten only a fruit salad, and a health salad.
Now to just NOT panic if I lose some weight.

Day 23 - Stupid people

A very lazy day.
I read a lot, and did laundry.
No cancer related thinking today :-)

I grabbed some money and went to the liqueur store for some Sherry.
One bottle usually costs R29.95. They were on sale for R26.95. I counted my change, and I had R54 exactly. Providence? :-)
So I handed the teller lady my pile of change. She looked at it, and at me with a funny look. An old phrase came to mind,  "Like a stunned haddock".
I told her that the bottles were 26.95 each, times 2, is 10 cents under 54 rand, and I just handed her 54 rand, and I expect 10 cents change. More "stunned haddock". Then she walked away and came back with a calculator, and started counting the change. I swear I could smell fish.

 The other day I was walking to the mall. At a large intersection, about a kilometer from the mall, was a stalled car. In it were two young girls, about 18 each. One got out and started to push. About 20 meters across the intersection on the left was an empty lot. If you turn to the right, up a hill was the mall.
I started to help push, but was thinking about my back, and not hurting it. We had pushed about halfway across the intersection when the girl driving turned right. I stopped pushing and walked to her and asked what she was doing. She said they are going to the MacDonalds at the mall. I told her she should be going to the empty field to the left, not one kilometer up a hill. She gave me a look, that made me want to do extreme violence to her. She then said in a voice as if was a child, "I told you we are going to the MacDonalds!"
 I just walked away. She said bad things.

This whole cancer thing seem like it just can't be true. I am strong, healthy, fit. If there is really cancer, I just don't see it.

Day 22 - From Stardust to Stardust

When I die, does my soul cease to exist?
Is there something (or even anything) eternal about me?
I have spent my life searching for something spiritual to cling to. I want definitions, and facts, not faith and superstitions.

My spiritual searchings have taken me many places. Some of my searching have lead to the following:

-----
In Buddhist Dhamma, there is the concept of "Anicca".
Everything Always Changes.
 Does this include reality, and facts? I think it does. Just like a river's atoms and molecules changes from one moment to the next. The river this moment, is not the same river in the next moment. Reality a minute ago, is not the same as reality now. Anicca

-----
Things I consider factual, and correct, seem to change. My reality, is just my perception. As perceptions change, reality seems to change.
The winner of a war, is the one to write the history books. Their version becomes the truth. Their version becomes fact. They decide what actions were moral and ethical.
 Was the Hiroshima bomb moral? If Japan had won WW2, I am sure that the atom bomb makers and the decision to use it would be considered a crime against humanity.

-----
 I was a vegetarian for 17 years. I did not believe that killing anything was necessary, even for food. Then one day, a friend and I were walking in the Okavango Delta. We were walking from Xaxaba to Maun. It would take us about 24 hours. It was a stupid thing to do. There were many ways to die there. I realized that about half the animals we saw would eat us, if given a chance, and the other half, we could eat. That put us right in the middle of natures food chain. That is where man naturally belongs.
My opinions, and my perception of reality changed.

-----
Maybe each individual atom has a tiny "soul". Many atoms together, and each living thing has a distinct collective "soul". Is my soul simply the collection of a zillion tiny atomic souls? When I die is my "soul" simply divided into a billion small parts and each becomes part of another "soul"?

-----
I like to think that millions of years ago a star exploded in another galaxy, and the atoms from the star were scattered throughout the universe. Some of those atoms hit a big rock in space. That rock then crashed into earth. Most of it burned up into the atmosphere, and some tiny parts hit the ground. My mothers garden got hit with a tiny bit of meteorite. The food she grew had some minerals from this space rock. The air she breathed had some atoms from the far away star that had exploded. Then I was born.
The atoms in my body are from all reaches of the universe.
 When I die, my body will become dirt, and plants will grow from it. My atoms will become part of a horse, or bird, or a tree. In a few billion years our sun will explode, and turn the earth into space dust. The atoms that my body borrowed for a short time will now become part of another galaxy, star, planet, or maybe even eventually another life form.

From Stardust to Stardust.

Day 21 - PET scan Approval

Finally, I just received word from the Medical Aid, and the PET/CT scan people. I have an appointment to be scanned on Wednesday the 2nd of Sept at 07:30.

The PET/CT scan people send a long, detailed letter explaining what I must do the day before the scan, and how the actual procedure will work.

Today has been a lazy day. I spent most of it reading my book.
I have also been working with an old cassette tape course that I bought in 1984. It is a very good Setswana language course. I am converting the cassette tape recordings into mp3, and the books into a PDF. Lots of work, but it is a good course.
 But then I think about cancer. Why try to learn a new language that may take a few years to learn, then never use it anyway? Duh!

I have been reading about sugars and cancer. Many times on the internet I see people say to avoid sugars and alcohol. I am now convinced that there are good sugars, and bad sugars. If you just think that an orange has more sugar in it than a doughnut, you will see what I mean.
It seems that the life style that surrounds doughnuts and alcohol is the problem, not the actual sugar or alcohol. They both make you fat, which is bad for anybody. I will continue my bedtime Sherry. :-)

I am waiting patiently for my PET scan. It will tell me much more about the spread of the cancer. Maybe I want to start spending my money. I have savings to probably let me live until I am 90. If I get to spend that money in just a few years, then I am a wealthy man. I have no plans to die with money in the bank.

Day 20 - ICD code battle

I slept well and got up strong.
Breakfast was a big fruit salad. Yummy.

My good friend sent a free online book called "Against Authority". Very interesting. It is about many things, such as understanding the difference between when someone has "power" over you, versus when they have "authority" over you. It seems to be leading up to the increased surveillance techniques of various governments.
Power - Is the ability to influence events.
Authority - Is a right to get the things done through others.
Someone can have power over us, but not authority over us.  We assign authority to whomever we want to have it.
The author shows that worldwide, one in 20 million Americans have died in terrorist attacks in the last 5 years. One in 465 have died from heart disease.
So we can assume that Burger King and KFC have caused more deaths than terrorists. Maybe they are part of a terrorist network.
---

My one friend says that death is no big deal, AND every moment is precious.
 If I am dead, there are no more precious moments, EVER.

 If I have a dog that I love, and that dog dies, then I am sad. Sure, the dog may not care, but I will never get joy from that dog again, except by reliving  memories.
What if, I own many dogs. If they all died at once, it would be a big deal to me. I will never get joy from those dogs again.
  Now if I die, instead of the dogs, I will still, never get any joy from those dogs again. Not even in memories, because death stops memories.

Of course if I am dead, then I won't be sad, just dead. But "dying" makes me think about losing all the joys from life. My death is like all my dogs dying, and all the birds dying, and all my loved ones dying, and the sun burning out, all at the same time. I will lose all that I hold dear in life, plus all the memories, of all that I hold dear.

Maybe death is not a big deal, but dying sure is a big deal.

-------

I just called Medical Aid, and the Oncologist, and the PET scan people. I
think a polite description for the medical system is, "It's a fuck up."
Medical Aid says that the new request still has the wrong ICD code.
The Oncologist says she changed the code to C49.9.

ICD-10 Code: ‘C499’ (C49.9) Diagnosis - Malignant neoplasm of connective and soft tissue

The PET scan lady says she sent the new request in with the new code. Medical Aid says the new request still has the old code.
So I called the PET scan lady again, and she gave me the reference
number of the request, and said the code was C49.9. Medical Aid says that maybe the new request is being ignored because they already have that request on file. So the PET scan lady will be calling them again.
My diagnosis was 20 days ago. The chain of medical care is too long. Some of the links in the chain are caring, and competent, but it only takes one weak link in the chain, to drastically reduce someones chances of survival.

This blog seems to be all about ME, ME, ME.
But then I guess that is it's purpose.

Day 19 - Back in Pretoria

I arrived in Pretoria on the bus, at about 8 this morning. I napped, did laundry, then went to see the wound care lady.

She worked on the sores on my leg. Two look like they are healing, and two look like they are growing. She said those should be cut out. I explained that I was trying to get that done. The receptionist said that I should call the medical aid and see if the PET/CT scan has been approved yet. I'll do that first thing in the morning.

 I was missing 2 books from a series by my favorite author. Neal Asher. I had ordered the 2 books of the series that I didn't own. They were delivered while I was in East London. So I now have the whole series. I finished the last book in the series this morning on the bus, and I started the first book of the series about an hour ago. I am on page 6. There is something exciting about starting a series. Because I have read the entire series years ago, I am assured of many thousands of pages, of reading pleasure. Well, unless this silly cancer thing gets it's way.

I went shopping at the Fruit and Veg City. I spent R430. I bought enough to make a fruit salad for breakfast, a health salad for lunch, and veg and fish for super, for about 3 days. So I will be healthy for 3 days at least.

Day 18 - Hikeing

Maddie and I got up early and went for a hike with the East London hiking club.

 There were about 40 of us. It was about 6 KMs along some jungle growth on top of sand dunes. Then thick brush for a few kilometers, then along the seashore. The seashore was very rocky and we spent much of the time helping each other up and down steep rocky pathways.

It was good exercise, and nobody got hurt. It took about 4 hours.

Now we are home, and I am packing and Maddie is preparing Padkos (literally - Road food) for me to munch on the bus. Otherwise I will have to buy expensive candy bars along the way.

I have arranged for a Taxi to take me home from the bus station in Pretoria. I then need to get my Beetle running and visit the wound care lady.

The house here, that Maddie is living in has been sold, so I'll not see it again. It has been a pleasant place to get away from Pretoria. We don't have any idea where they are moving to next.

I'll try to send this from Bloemfontein. That is about half way to Pretoria.

No cancer thoughts today. I was very busy.
There may not be an infinite number of days like today for me. Maybe I have a few more. Maybe you will have many. Or maybe you will get hit by a bus today.
Cherish these days.

Day 17 - Sadness

A lazy Saturday so far.
We went to a fancy garden restaurant for lunch. We both had a  salmon salad.

While there, I was thinking about how having cancer makes me sad, and why.
A few days ago I talked about how I was only sad about missing things, that were enjoyable, or things that made me happy.  Naturally I am not sad about never seeing things again that were unpleasant, painful, or terrifying.

 I have one friend that says every second of life is precious, and must be cherished. I have another friend that says death is not a big deal. Two very opposite views.
It must be much easier to deal with cancer if you don't care whether you live or die.

  I watched an earthworm crawl out of the ground, snoop around, then crawl back into the ground. I hope to see it again someday. But then I think about my cancer. I may never see an earthworm do that again. That is sad.
  Today I went and listened to a fountain. Fountains are wonderful things. Designed, manufactured, and maintained for pleasure and calm. Never for violence, or to hurt, or to control others. I love fountains.
There now seems to be a finite number of times, I will enjoy a fountain. The sight and sound of this fountain made me sad.
 Today I talked with a beautiful Siamese cat. I enjoyed it very much. Yet that time also, was sad.
 I hugged Maddie, and I was sad.

But I will be dammed if I will search out the worst in life just so I will be glad I'll never have to do that particular thing again. Duh!
But what is the worst thing that can happen? Hmm...I guess having cancer has to be pretty high up on that list.
Not as bad as Ebola. 

Should I be grateful I don't have Ebola? Of course I am. But that has nothing to do with whether I have cancer or not.  I'm just glad I don't have Ebola right now.

People say for me to enjoy life to the fullest.
Yet the best part of life, is now the saddest part of life.

Day 16 - Doctors and money

Not much happened today.

I walked 8.6 KMs to the bus station and got a bus ticket.  I leave East London at 16:30 on Sunday, and arrive 07:30 on Monday morning in Pretoria. Then to the Wound Care Lady for a 13:00 appointment. 

We read about many types of Alternate and Complementary cancer treatments. Alternate treatments replace normal medical treatment. Complementary treatment is done with normal treatment.

There is so much discussion online about how cancer treatment is such a huge money maker for Doctors, Hospitals, Medical suppliers, and drug companies. They would be adversely affected financially if a simple or cheap cure was found. Many people feel that the big business of cancer means, that cancer will not be cured soon.

I remember how I had many visits to the prostate Doctor, and many expensive tests. He then prescribed some pills. I asked him if the pills had any side effects, and he said no. So, I asked him why he didn't just prescribe the pills before all the tests, and see if they worked. He said that since Medical Aid was paying, it was good to do all the tests. If those machines and skilled nurses are not utilized, and don't make money for the hospital, then the hospital would not keep them, and when someone did need those tests, machines, or nurses, they would not be available.
It's all about the money.

We just watched "Penguins of Madagascar". That laughter was probably worth more as a cancer treatment, than an expensive shot of chemo. :-)

Now for some medicinal Sherry, then to bed.

Day 15 - Chasing the ICD codes

Last nights sleep was as good as possible, with someone that pees many times during the night. I cheated, and used some chemicals to aid my sleep.
It is a cool, cloudy day here on the coast. We were going to get up early and walk, but somehow the bed kept us trapped for an hour after we should have been up.
Maddie just made a breakfast berry smoothie..Yummy.
Then we both sat down to make phone calls.

I phoned the PET/CT scan ladies, and the Medical Aid office.

The Medical Aid says that I can have treatment done, and claim later, but with no guarantee that it will be approved.
I then asked how my new application for PET/CT scan was doing, and the guy says that he has no record of any request other than the one they rejected a few days ago.

Then I called the PET/CT scan ladies and chatted to a very nice lady. I told her that I wanted to pay cash for a PET scan, and then claim back from the Medical Aid. She said that I could not do that.
 She explained that paying first, then get reimbursed, was only for emergencies, when there was no time to wait for approval.
She explained how in small print, on the back of some page in the Medical Aid contract it says that PET scans are not an emergency procedure, and will not be reimbursed if paid for before approval. X-rays or a CAT scan are covered, because they are necessary in many emergencies. She then explained how the long wait for approval, is hard on cancer patients, and therefore she always requests priority handling for any PET scan requests to the Medical Aid.

I asked about whether she had see the new corrected PET/CT request with the proper ICD codes. She said no, but wait a moment. After a minute,  she said she had it in hand. It had arrived a few hours ago in the early hours. She checked the ICD code and said it was for Angiosarcoma, and would require a PET/CT scan. She said she would sent it in within hours. She also said they are fully booked Monday and Tuesday. It would take 1 to 3 days to get approval, so there seems no way I can get a scan before next Wednesday, even if I paid cash. She said that she understands the waiting game is not fun, so the minute she gets Medical Aid approval she will call me and we can figure out the quickest way to get things done. She actually seemed to care.

So it looks like there is no hurry for me to get back to Pretoria, So I'll spend a few more days with Maddie, and plan on taking the bus back so I can do the wound care lady on Monday afternoon.

We had a health soup for supper.

A friend emailed me today saying that death is not that big a deal.  That makes me think, that she doesn't have much to live for. If you have no reason to live, then there is no reason NOT to die.  I on the other hand, have much joy and happiness in this life, which I am not quite ready, to let go of.

Day 14 - Dressing the leg wounds

Last night was a bad night. I was up many times, and each time, I was up for about a half an hour.
While I was up I would use my cell phone and google whatever was on my mind. This morning I checked the history of what I had googled.
First was compression stocking discomfort, second was size of pillow to put between your knees to relieve stress on the hips while sleeping, third was which stretches to do when the back wakes you up in the middle of the night, and fourth was about Angiosarcoma. Four different things keeping me awake.

It was a cool, cloudy day, and Maddie and I walked to the mall. We did some shopping and walked back. 5.8 KMs total.

Back at home we had super healthy smoothies, and a super healthy salad.

The house that Maddie stays in, is being sold, so Maddie will be moving soon. Where, we don't know.

We then decided to tackle the changing of the wound dressing on my leg. Since I am now using a compression stocking, instead of wrapping the leg, it is far simpler, but much more difficult. We thought about the problem of getting the stocking on, and decided to first put on a leg from a woman's pantyhose. I think that made it much easier. The compression stocking slides over the nylon stocking.

We removed the old stocking, and the old bandages. Lots of gunge and blood. She cleaned the wounds, and applied a thick gel, that the wound care lady had given us.
We then positioned the new bandages, and then put tape all around the bandage to make sure no liquids would leak out. Then we put on the pantyhose stocking and then fought with the compression stocking for about 15 minutes, till it was on.
I think we did good. Doing that all by myself would have been a mission of note. I am SO glad Maddie was there to help.

The Oncology office called saying they had talked to the Pathology Lab, and the Lab was going to redo the biopsy report to include the proper codes. I feel I should be in Pretoria, not here on holiday with my girlfriend.

I feel I am not being proactive. I am waiting for the system to crawl along. I should be fighting this cancer, not just being a passenger on the cancer ride.
My good friend from Texas says that I should have just paid cash for the PET/CT scan and got it done. Then claim from the medical aid. If they were going to approve it, then they would also honor the claim.
 So tomorrow morning early I'll call the Medical Aid office and see if my Medical Aid actually works like that. Maybe I can move things quicker if I pay cash for everything, then claim the money back from the medical aid, instead of waiting for approval first. Then maybe I'll call the PET/CT scan place, and get a booking.

I will reluctantly also book a bus ticket for tomorrow evening back to Pretoria. I really hate leaving Maddie. These last few days may be the last "normal" days we will ever have together. That makes me sad.

Another very wise friend in Texas, says that the things that make you sad, are the things you will miss the most. These are probably times, you were the happiest. So when sadness strikes, I just need to turn it around, into being a remembrance of a happy, pleasant time, and re-live that time again.
That will be easier said, than done.

Day 13 - ICD Codes and Good Quotes

I just called my Oncologist regarding the medical aid refusing the PET/CT scan.

We were not sure exactly where the problem was. The Oncologist has to request a PET/CT scan from the people that only do scans at another hospital. They have to apply to the Medical Aid for permission to do the scan. My Medical Aid refused the scan.
The Medical Aid says they will not approve a scan if I only have malignant leg sores. I told them that the diagnosis was Angiosarcoma, not only leg sores. They said no, the diagnosis was leg sores.
So the Oncologist and I checked the biopsy results, and what the pathologist had written. The biopsy report says:

DIAGNOSIS:
- High grade, poorly differentiated epithelioid  angiosarcoma. 

The ICD code was C44.7.
Google says that C44.7 means - Malignant neoplasm, skin of lower limb, including hip.

C44.7 does not require a PET/CT scan, but does require surgery.
So my Oncologist is going to ask the pathologist to redo the biopsy result and include the correct ICD code.

Life is getting way to complex, convoluted and chaotic for my simple soul. It is a good thing I have a practical, modern thinking girlfriend.
My idea of a complex lifestyle is when I want to meditate, but think I may have to pee before the hour is up, so I have to change all my plans, and pee first. That is my idea of a complex life. NOT when ICD codes are wrong.
 I am sure that people have died because of some typist using the wrong ICD code. The ICD code determines what treatment you get, NOT what is actually wrong with you, or what you need to continue living.


Sometimes I think I should never look at the internet about Angiosarcoma. I just found this:

Background: Angiosarcomas are a rare but aggressive form of soft tissue sarcoma. At metastatic stage, the clinical benefit of therapeutic intervention remains debatable.

Patients and methods: We have carried a retrospective analysis of 149 cases treated between 1996 and 2009 in the French Sarcoma Group.

Results: The median age was 60; the sex ratio was 0.80. Sixty-two percentage of cases presented with metastasis at the diagnosis. About 20% arose in irradiated fields. The median overall survival was 11 months.

Then with a bit of depression, I start reading quotes by people with cancer.

“I'm not afraid of being dead. I'm just afraid of what you might have to go through to get there.”
― Pamela Bone

"I'm not fighting," he said. "It's already inside me... and I'm not going to fight. I'm going to be a good host, let it pass through me.. resist nothing. Sieve. Let it all pass through.”
― Amanda Palmer, 

You who live, will die another day.

Don't deny the diagnosis;
deny the verdict.

Remember:
You are not dying of Cancer,
You are living with Cancer.

But I keep thinking about the line from above...
...the clinical benefit of therapeutic intervention remains debatable.

Day 12 - Cancer Food and PET scan refusal

This morning Maddie and I walked about 6 KMs. The new stocking feels better than the wrapping we used to do, but the sores still hurt.
I say hurt, but it is a wimp pain. Like an ant bite. Not real pain.

We have been reading a blog about a guy that has done lot of research regarding food and nutrition for cancers.

https://chrisbeatcancer.wordpress.com/

He has some good recipes that Maddie pounced on. So today we went shopping for super healthy foods to boost the immune system. Maddie says "I can make a vicious salad."

We bought Salad making ingredients such as Spinach, Broccoli, leeks, sprouts, peppers, garlic, turmeric, mushrooms, crochets, and all sorts of veggies.
We also bought ingredients to make smoothies. Strawberries, blueberries, soy yogurt, bananas, pawpaw, and  Clementines. So it looks like a healthy few days ahead. No Pizza or KFC on the list.

I received a letter from my medical aid saying they will not approve a PET/CT scan just because I have sores on my leg. Apparently they never received the biopsy results. I'll have to call my Oncologist tomorrow and follow that up.

We have decided that a glass of Sherry is a mandatory method of fighting cancer. :-) So I need a glass a night.

Right now Maddie is in the kitchen steaming veggies. She says they are ready. :-)

Day 11 - Bus Ride to Visit Maddie

 The bus ride was survived, and I am safe in Maddie's house.

At the start of the 17 hour bus ride, there was a traffic accident right next to the bus. Very exciting.

The bus seats 60, and we only had 45, so I had two seats to myself. Nobody wanted to sit next to the grumpy, old, white man. I was the only white guy on the whole bus. The rest of the passengers were black, but from the middle class. Rich enough to go on holiday to the coast, but not rich enough to fly.

South African politics lately has been focusing on the incompetence of the ruling party and the failure of the electricity generation department of the government to supply power to all of South Africa. We have "load shedding" a few times a day. Black outs in order to not exceed the power plants capacity.

When the bus pulled out of the one station last night, the engine died, and all the lights went out. As the driver was restarting the engine the comments came quick from the passengers.
"Load Shedding!"
"President Zuma must be driving."
"That means this bus is going to Zimbabwe because Zuma is taking this whole country there."

Quite an open display of being upset at the current government.

My back bothered me, and I have taken too many anti inflammatory, and pain pills.
Hopefully a few days rest will fix it.

Maddie wants to go shopping tomorrow for super health food. I want to start detox, and healthy eating. Maybe that is like closing the barn door after the horse has left. If a lot of healthy eating helps me a lot, then a little bit, should help a little bit.

Day 10 - On The Bus

I'm on the bus, headed for the coast for a week before I get real busy.

I am very judgmental of people that just don't think. The average person I deal with seems to never think. Is that what stupid means? Even a small amount of intelligence must be used to be useful.

Like the joke about how the average person is stupid. So there fore, half must be below stupid.

I'll send this from Bloemfontein just before midnight.

Day 9 - Preparing to visit the Coast

Today was a long and chaotic day.
I was too anxious to spend some time with my girlfriend  on the coast, and didn't think about all the complexities of a quick trip.

I booked a bus seat to leave on Friday evening. From Pretoria to the coast.
Then I remembered that I needed to have the leg wounds dressed every few days.

Trying to pay for the bus seat via the internet is so much more difficult now with the new security measures, so I got it done by phone with the head office in Cape Town.
 I then had to go to the bus station and get my card swiped. The bus station near my house has moved to downtown Pretoria. More traveling in Friday afternoon traffic. I called the wound care lady, and she said I could come in today. I then managed to re book the bus to only leave on Saturday afternoon.

 I went to the wound care lady, and she redressed the sores on my leg. Two are large and bleeding and weeping. They look similar to what they looked like 10 days ago. I would be very happy if they cut them all out. How can an open bleeding cancer tumor be something you allow to grow and exist for weeks? It does not make sense to me. 

Getting the new compression stocking on was a real mission. It took the wound lady almost half an hour. With my bad back, I don't think I could put that stocking on without a lot of help. I hope Maddie has strong, thin fingers without fingernails.  If she doesn't now have strong, fingers without fingernails, she will by next week. :-)
 The compression stocking goes from my toes to the top of my thigh. If they are worried about spreading of cancer, then it seems they would not want the leg wrapped or compressed. When the leg is big and swollen, it cuts off the lymphatic and blood system. Isn't that what we want? I don't understand.

There is so much I don't understand.

In my experience, fear usually comes after a near death experience. With cancer it comes before.
In flying I never was overly concerned that I had many lives in my hands. I was concerned that the passengers were safe, comfortable, and "on time". Comfort and "on time" were my biggest concerns regarding the passengers. Their safety was almost assured, because it was so tightly linked to my own, and I did everything possible, to ensure my own safety. If I was bored, then they were safe. If I was scared, then they weren't safe. 

With cancer, I seem to be dragging along all of my loved ones, through a long and unpleasant emotional journey, that none of them deserve.
If I died quickly, like a heart attack, then none of my loved ones would have the whole long, unpleasant, pre-death routine.  I selfishly, don't want to commit suicide, to save my friends and loved ones from the pain of MY cancer.
Maybe if I was a better friend I would do so.

 What we need is like an island where I will live out my days in luxury, with others like me. Before going to the "hospice island", I would say good by to all my friends, and they would never see me again, and they could start healing and get on with their lives, while I die comfortably  with the knowledge that my loved ones are no longer suffering because of my cancer.

We need a Hospice Island.

Day 8 - Prayer and cancer survival

Today was a slow day. I went to a mall with a friend, and we looked around. She is very religious, and feels that things wrong with the body can be fixed with the mind. Romans 12-2
And be not conformed to this world: but be ye transformed by the renewing of your mind.

I do believe that much of the bodies problems can be mental, and can be cured mentally. But I also know that Zen Buddhists, Muslims, and Christian have died from cancer.  Also that many people have prayed to be cured, and have died of cancer.

I saw an interview with a sole survivor of a plane crash. She said she survived because she prayed. But there were some Nuns also on the plane. I bet they were praying, and they died. Maybe God did save her, and let the others die. But I don't think the prayers were responsible for her survival.

A positive state of mind is essential to fighting cancer, but maybe not for surviving it.  I need to think on that a bit.

Since the Medical aid has to first approve the PET/CT scan, and then the hospital has to book it, My Doctor says it will take about 10-14 days.

I want to zoom down to the coast and be with my girlfriend for a week, then come back in time for the PET/CT scan.

Last minute travel has an inherent stress factor that I will have to deal with.
I need the leg sores treated every few days.
I need to get prescription pills.
I need to chat with the wound care lady and see what needs to be done while I am away.
I need to buy bus tickets.
I need to arrange a taxi to take me to the buss.
I need to pack.

So I will be very busy for a few days, and will have a 17 hour bus ride. I will probably miss a blog or two.

I think being busy is a good thing. I have faced death before, but I was very busy then. Fear and sadness were not present till much later. An idle mind and a vivid imagination can be a bad thing where cancer is concerned.
Maybe my last minute, panic type of visit will be a good thing, and make other things important for a while. I need to still wrap my head around all the aspects of having cancer.

Day 7 - First Oncology Visit

Today I had my first visit with the Oncologist lady.

The Oncologist lady is young-ish, maybe 40. She spoke well and explained things as best she could. She looked at my leg close, and said that there seem to be no new sores. That is good. She also noted that 2 of the 4 tumors are regrowing. I said that surely was bad news, and she said not really, because that means that the biopsy seems to have completely removed 2 of the tumors.

I asked why she doesn't cut out the other two right now. She said that
if they did that, then the pet scan might not pick up anything. She said
that was also why she doesn't want to do any chemo now. She said that
the best way with certain pet scans is to not do any chemo or surgery for a few weeks before the scan.

 So I got online, and found this. It also says 2 week after chemo or surgery.
http://www.metroregionpet.com/whentodo.html

  We talked about the internet. She then talked about the evils of
blogging. She says she often reads the cancer blogs, and most of the time they contain false or misleading information. If you are a blogger, the desire to give information, when there is none available requires imagination, not Medical knowledge.

 I asked why, on one blog the lady said her husband got diagnosed with Angiosarcoma, and within 24 hours he had a pet scan and started chemo. I get diagnosed and every body goes on holiday and only sees me a week later.
She said that if the Angiosarcoma had been initially found on a liver biopsy, I would have been admitted that day, and had the pet scan within hours. Mine was diagnosed was on an extremity in the skin.

 I asked what she would tell her Mother, if her Mother was sitting where
I am and had the exact same diagnosis. She said she would say "Mother, go home, eat healthy, keep an active lifestyle, don't read blogs, and don't blog. I'll call you in about a week with an appointment time for a PET scan."

I don't think I will ever be satisfied with the results from any test, because each test result brings more questions than answers. Each results of a test, just tells you what the next questions should be.
There are no answers with cancer.
She said that with Angiosarcoma the goal is not a cure. It is to
maximize the length of each remission.

 I hate the waiting.

Day 6 - Daily Chores

I woke up early, drank some hot lemon water, then took a nap, :-) so it is almost noon.
It is a cloudy day, but I have to do laundry.  So, I am doing laundry, late on a cloudy day. Duh!

This brings to mind a Buddhist parable about a young novice Monk. His job was to cut wood, and carry water for the monastery.
One day he asked the head Monk. "What will I do after I have achieved total  enlightenment?"
The head Monk replied "Chop wood, and carry water."

Before I was diagnosed, I used to wash dishes, mop the floor, and do laundry. Now that I have cancer, I wash dishes, mop the floor, and do laundry.

I have always liked to do dishes. I don't know why. While washing dishes, I feel like I am doing something that people have been doing, for as long as there have been people.
 Instead of wiping the left over mammoth off a rock, I use dish washing detergent and hot water in a stainless steel sink. But the principle is the same.
My girlfriend Maddie, is a very clever soul, and she understands this. If I don't feel like doing dishes she happily does them, but other wise she leaves the kitchen sink to me. I appreciate that.
When we visit people for supper or a braai (bar-b-cue). I always ask if I can help wash up. People always say something like "Never will I allow a guest to do that.!)
They never believe me when I say "I want to do the dishes." They never think about what I want, only how it would look to others, and what "others" would think about them.
Maybe most of their guests say they want to help, but never really mean it. Do they have the sort of guests that would consistently lie about things like that? Are good manners really just small lies? Why can't good manners be truths?

I have become sensitive to people's "intentions" in their actions around me. Some of my friends are the best people to have ever lived, and they truly have my best interest at heart.
 Others, not so much.
When some "friends" find out I have cancer, the first thing they do is to tell all their friends. This gets them attention and sympathy from their peers.
They will tell their peers how we were so close, and how devastated they are. Yet, they had not bothered to answer my emails for many months.
All false, all show, all shallow.  These "friends" have a very long path in front of them. Their whole lives are centered around themselves.  News Flash people! My cancer is NOT about you.

Day 5 - Why Cancer is sad

Today while walking to the Mall for a deserved big breakfast, I once again felt strong. The sun was bright, and the sky pure blue. Everything felt perfect. If Angiosarcoma will strike me, it will NOT be today.

Could it be that cancer is a symptom, and not a disease? We fight it like we fight a symptom. What is the underlying cause?

There is a lot on the internet about the pros and cons of chemo. It kills fast growing cells. Cells like bone marrow, mucus membranes, and cancer. Angiosarcoma is such a fast moving cancer, that even if you kill it all, it just comes back quickly. But if the chemo kills it, then when it comes back there is no immune system left to fight it.
I need to think on that.

Some more good web sites I have found.

http://theboitsons.info/?p=126

http://sarcomahelp.org/angiosarcoma.html

What is it about cancer that makes it sadder than other deaths.
Thousands die on the roads every year. Death is usually quick.
Many die in airplane crashes. Lots of terror, then death.
We live in Africa where genocide and xenocide are a way of life for millions.
What about cancer makes it such a big deal?
Why is one death a bigger deal than another?
Whatever method of your death, you are freed from the dream of life.
In my aviation career, I have been in potentially fatal positions a few times. I was never sad. I think I was to busy. What makes this Angiosarcoma so sad?
Maybe the fact that unlike a quick heart attack, you end up dragging your loved ones along for the ride.

I hope that one purpose of this blog is to make my friends more tolerant of any irrational behavior on my part. Yesterday while getting a Kleenex, I felt it's softness, and tears came. Fortunately I had a Kleenex handy.
What a wimp I am.

A good friend from Texas just called on the telephone. What a wonderful surprise. His wife died not to long ago, after a long bout with cancer. He knows more about it than I do. We chatted about many things. His girlfriend was there also, and we chatted. Such wonderful people.

If I am able to travel after making plans with the Oncology Doctor on Wednesday, I would like to take my girlfriend, Maddie, to near Seattle in the USA to visit my Brother, then to Florida to visit friends there, then to the ranch in Texas for a while.

I am concerned about why all the web sites mention how once Angiosarcoma was diagnosed, the patient was immediately taken to chemo and PET scan. some times within hours, but usually the next day.
My doctor said to go straight to the oncologist, but the oncologist said she was going away for the long weekend and would only see me in 5 days. Does she see me as a waste of time? Defensive Medicine at work? Now she can say I was to far gone before I saw her.

The wound care lady always wanted to change my dressings every 2 days. The medical aid pays for it, and she makes a living with people like me. Then the long weekend comes up, and then she says I only need to change the dressing every 7 days.  

I don't understand, and I am scared.

2:20 Morning of Day 5

I can't sleep. Turned out lights at midnight, and was up at 2.
I just made hot lemon water in my new thermos.

How much responsibility toward my friends that will survive me, do I have. Should I die with a clean house and everything packed away nicely for the next tenant? What about my RV in the states? Should I make sure it is ready to be sold by the new owner? I am starting to think of many strange things.

A good friend sent a questionnaire about US political viewpoints. The results of the survey tell what political party or candidate your views support the most.

I made it about half way through, and realized that I really don't care what political party, or person will govern America. 

Questions about what we do about global warming. Irrelevant to me.
Questions about abortion and my pro-life stance. Irrelevant to me.
Questions on criteria for welfare recipients. Irrelevant to me.
Questions on Geneticly modified foods. Irrelevant to me.
Questions on death penalty. Irrelevant to me.
Questions about Unions. Irrelevant to me.
Questions about.....Irrelevant to me.
Questions..Irrelevant to me.
Irrelevant to me.
Irrelevant to me.
Irrelevant to me.

My world now consists of MY world. I seem to share little of it with anyone else. A few days ago the property tax structure of Texas towns was important to me. Now it's importance is on par with ...with..a pile of dirt in some small town in the Mongolian desert.

So much of my life of a few days ago, is now seen for the triviality that it is. People that worry about whether genetically modified foods should be patentable really don't have anything more important in their lives, and must make up stuff to keep busy and feel important.

For the people that are worried about things, like whether labour unions should be subsidised or not, These people should go do important things, like hug their children, kiss the wife, and play with the dog. For God's sake people, get your priorities right.

I remember a saying: You will never meet a hungry environmentalist.

When people are concerned with necessities of life, (food and water) they have no time for the bloated governments or fat cat politicians, or time to spend worrying about tax structures of large corporations.

A can of stolen tuna is far more important to many people than renewable energy subsidies.

To be friends with someone usually requires certain mutual attributes. Financial parity is important. A billionaire, and a homeless bum would not be able to form a meaningful friendship. The bum doesn't want the caviar of the billionaire. He just wants a Big Mac. The more equal two people are financially, the better they will be able to form a friendship.

If you will live another 30 years, and meet someone that will be dead soon, there is little future for that friendship. And now I see that the opposite is also true. Temporal parity is important.

My friend and I used to chat for hours about governments and politics, because those thing would affect our future. They were important. Now they are not important. They will not affect my future.

I seem to be getting morbid. I don't even know for sure that the cancer has spread. Just because all the Doctors say that Angiosarcoma is a fast and deadly disease, and the survival rate is 10% after 5 years doesn't mean it is true. Maybe the biopsy was wrong. Maybe my results got switched somehow.
Maybe not.

Day4 - Understanding the Diagnosis

My Brother and I send one hour mp3 recordings to each other on a weekly basis. We chat about air planes, and computers, and other brother stuff.
Today I got an mp3 from him, and as I listen, I take notes on a 3x5 card. Then when I reply, I have a list of topics that he talked about. I write the date on the top of the card. Only when I was half way through my reply, did I notice, that the date, instead of being August 9 2015, I had written "Day4".
Like the world started four days ago.

The way I look at everything has changed. I walked about 3.1 km to a Chinese shopping mall. I bought a cheese slicer, and a Thermos. Almost every thought is preceded by the acknowledgment that I have cancer.
I looked at buying a new charge controller for my solar panel. That would be a good 20 year investment. Not a good 5 year investment.
Everything I looked at was looked at in a new way, from what it would have been a few days ago.

I thought how most of my retirement money was in precious metals. Gold and Silver. A good thing to have if you expect the world economy to collapse within the next 20 years. But Gold and Silver are not good 3-5 year investments. My whole retirement strategy is now wrong. My whole financial planning is wrong. My whole travel plans are now wrong....My whole life is wrong.

During the walk, I again felt like there is nothing wrong with me. I am carrying a small backpack, walking 6 km on a beautiful winter day. I know many "healthy" people that can't do that. I am strong.

On arrival back at home, I decided to try again to get some meaningful information on my cancer.
When I had asked the Doctor about all the biopsy results he had said. "It's very very bad news. I'm Sorry." I don't know what that means. My last hair cut was "Bad News". Getting dog poo on your shoe is "Bad News". The sun burning out is "Bad News". Those word are so vague as to be meaningless.

A friend that is a very experienced nurse read my biopsy result, and said.
"It doesn't look too good, but there is still hope." What does that mean? Why do all medical people speak in riddles? Those words convey no meaningful information.

Most of the people that now know about my cancer say "Don't give up hope." I again, don't know what that means. Hope what? Hope I die in 8 months instead of 7 months. Hope I never will die? Hope I don't die in screaming pain? What is it I am supposed to be "hoping" for?

I then decided that with my new found access to many credible cancer web sites, I should be able to learn a bit more about my cancer.
I learn that:
Melanoma Cancer is measured in "Stages".
Stage 1 is a red spot, or a mole changing.
Stage 2 is an open sore.
Stage 3 is when it has spread to the surrounding Lymph nodes.
Stage 4 is when it is in the blood, and therefore spread through out the body.

I think the most informative line in my biopsy result is this:
The immunohistochemical profile together with morphological features are compatible with a poorly differentiated epithelioid type angiosarcoma.

OK, so I Google "poorly differentiated epithelioid type angiosarcoma"
Lots of hits.
One  Web site said,

Epithelioid angiosarcoma is a rare rapidly growing malignant vascular tumour with an aggressive course.  Death occurs two to three years after presentation.

Age:  Present in middle aged and elderly male patients. 

Immunohistochemistry:  The neoplastic cells showed positivity for endothelial cell markers - CD31, CD34, factor VIII-related antigen, and Ulex europaeus agglutinin I ; Epithelial markers - cytokeratins and sometimes epithelial membrane antigen; and  vimentin.

It is not uncommon for patients with angiosarcoma to have distant spread at the time of diagnosis. Up to 50% of angiosarcoma patients may have distant spread of disease at the time of diagnosis


Another web site said,

Stage 4 means in the blood..5 year survival rate is 10%.  50% survival is 7 Months.

Another said,

 Stage IV: The 5-year survival rate is about 15% to 20%. The 10-year survival is about 10% to 15%. The outlook is better if the spread is only to distant parts of the skin or distant lymph nodes rather than to other organs, and if the blood level of lactate dehydrogenase (LDH) is normal. 
 
I don't know my LDH level.
I re-re-re-read the biopsy report, and it says

CD31 - Positive (diffuse strong membranous)
CD34 - Positive (diffuse strong membranous)

Diagnosis
- HIGH-GRADE, POORLY DIFFERENTIATED EPITHELIOID ANGIOSARCOMA

I guess that the bottom line is:
It is very bad news, and it doesn't look too good.

Day 3 - Cancer Quotes and Ghosts

It was a perfect winter day. Blue skies, and a crispness to the air. I walked about 5 km. I felt so great. How could I be sick? There must be a mistake!
 :-(

I read a lot on-line at different sites for cancer treatments and surgeries.
The American Cancer Society seem to be the most credible.

So many cancer people blog. I think it is a good medicine. I know that when I blog, I can tell it 100% like I see it. I feel free to say what I feel, because those that matter to me won't care what I say, and those that do care, don't matter to me.

There are many good quotes to bring out the realities of having cancer. They help to....Hmmm... To what.... To bring me to realize the indisputable and irreversible fact of the disease.

Some good quotes are:

"Whether you think you can, or you think you can't, you're probably right"

"Being on the tightrope is living; everything else is waiting."

"Cancer changes your life, often for the better. You learn what's important, you learn to prioritize, and you learn not to waste your time. You tell people you love them. If it wasn't for the downside, having cancer would be the best thing and everyone would want it. That's true.... If it wasn't for the downside."

 Life isn't about waiting for the storm to pass,
It's about learning how to dance in the rain.

I am not this hair,
I am not this skin,
I am the soul that lives within.
~Rumi

And my favourite:
Don't go there, till you get there.

There are also a few blogs that mention "ghosting". It is when a friend just disappears as soon as they find out you have cancer. It is like they were just a dream, just a ghost. You thought they were there, but they are just a memory now.
 Most ghosts are people that do not want to be reminded of their own mortality. Your very presence reminds them that this could happen to them tomorrow. They refuse to believe that. They must remove the thought of you, from their reality. 
 
 I don't believe in re-incarnation, but it sure seems that there are "New Souls", and "Old Souls". When I first read the teachings of Jesus, and Buddha, I thought, "But I already know that." It is like my morality and ethics come from somewhere else, and are in me to the core.  Maybe that is why I am not a religious person. I already think and act the way religion is trying to teach people to think and act. Religious teaching are truisms, just stating the obvious. Some people don't instinctively know these things.  These people really do need religion, and it is a good thing for them. 
 
 I believe ghosting to be a sign of a "Young Soul". A soul just starting on the path. We are all on the same path, just at different places along it. So let them continue to grow at their own pace, wherever they are on the path.
 I do not need to forgive the "ghosts", because there is nothing to forgive. They are not wrong, or mean.
 
 Hopefully some people  just starting on the path will meet up with an "Old Soul" to help guide them.  "Young Souls" seem to seek out "Old Souls". They are learning about the Universe, and the way that quantum physics, Buddhism, Prime Numbers and God are really just different perspectives of the same thing.   Some "Young Souls" are now “ghosts” to me, because of my cancer. Some "Young Souls" are learning at a fantastic rate, and are moving along the path quickly.

I am sure that this cancer will be a great teacher to me of "natural truths" and ways of the universe, and it will help me move farther on the path to understanding the universe better. 

Wild awake at 03:15

For the second night in a row, I fall asleep easily, and sleep as well as any 64 year old man with a swollen prostate can. :-) then wake up. After only 4 hours sleep, I might as well get up and read, or walk around the kitchen, or .. write my thoughts in a blog.
So I made some hot lemon water, and download the lyrics to an old Neil Diamond song that keeps running through my head.

"Done Too Soon"

Jesus Christ, Fanny Brice
Wolfie Mozart and Humphrey Bogart
And Genghis Khan
And on to H. G. Wells

Ho Chi Minh, Gunga Din
Henry Luce and John Wilkes Booth
And Alexanders King and Graham Bell

Ramar Krishna, Mama Whistler
Patrice Lumumba and Russ Colombo
Karl and Chico Marx
Albert Camus,

E. A. Poe, Henri Rousseau
Sholom Aleichem and Caryl Chessman
Alan Freed and Buster Keaton too

And each one there
Has one thing shared
They have sweated beneath the same sun
Looked up in wonder at the same moon
And wept when it was all done
For bein' done too soon
For bein' done too soon
For bein' done

World population is close to 7 Billion, and total number of people ever born is around 108 Billion.  Cancer/Death converts the minority alive people into the majority dead.

What is happening to me is far from making me unique. Just the opposite. I'm just doing what 108 Billion other people have already done. 

The deception of the ego still makes me think: But this death is different, because it is about ME!  This is personal, and so it is seen from a different perspective than the other 108 Billion deaths. This one seems much more important!

Steve Jobs had a net worth of over 10 Billion Dollars. He even had his DNA sequenced. He died of Cancer. Maybe 10 Billion Dollars isn't enough to save someone. What about 20 Billion? 50 Billion?

Maybe if I had lived a more moral and ethical life like Mother Therressa? She is one of the 108 Billion. Morals didn't help her.

Maybe if I understood the way the universe really works. Like Buddha? Nope.

Maybe religion. Religion didn't prevent Muhammed or Jesus from joining the majority.

Money, Morals, Faith, Knowledge and Power all do nothing to prevent the conversion to the 108 majority club. 

I hear some people say "Don't give up hope." I'm sure that most of the 108 club "hoped" they wouldn't die. Obviously hope will do nothing to prevent me from joining the 108 club.

There are many things that Money, Morals, Faith, Knowledge and Power can do. But cheating death is not one of them.

It is almost 5 in the morning. I will try sleep again.

Day 2 - Black Swans and friends

Lots of thoughts today. Very chaotic, and not where I want my thoughts to be. I want my thoughts to be on logical problems that I face, not on imaginings. Sometimes I feel that the "future" is really only my imagination at work. It doesn't yet exist. My view of the future is only what I "think" it might possibly be, not what it will be.
Two days ago my future was very different from what it is today. All my worries and dreams have taken a sharp turn in another direction. Today the weather was beautiful, and I walked about 6 km. Today was a very good day. I need to focus more on now, and today, and less on tomorrow.

One of the most influential books I have ever read was "The Black Swan" by Nassim Taleb. It explains how the more unlikely an event is to happen, the more you will be unprepared for it.
You put money away for your kids college education, you try to pay off the house, you save for a new car, then a Black Swan visits. Your in a car wreck and loose your eyesight, a loved one suddenly dies, a meteor strikes your house, or like in my case, you get a sore on your leg. All of a sudden, in seconds, your whole life changes. Much of what you have planed for, becomes irrelevant and trivial.

Two days ago I was wondering if I have enough solar panels to cover the various ineptitude of the electricity supply company. Today, it does not seem very important what the electricity supply will be like in 10 years.

This shift in priorities and interests has me wondering how many of my "friendships" will endure. I have friends that I spend a lot of time with. We have much in common regarding DNS and computer network security. I don't think I have the same devotion to network security that I had two days ago. So will my "friends" find me less of a person they want to be with. If our friendship is based on common interests, and my interests change, will my friendships change also?
Also some people just don't want to be around sick people. Two days ago I was a healthy, strong person....Now today, I can't say that. Will "friends" still want to be around me?

I have set aside enough money for my retirement, in case I live to be 90. Now I am thinking maybe till I'm 70. So should I live like a king for the next few years? That would be great to spend the last of my money, just as I die.
 I could live very well, but then what if I miraculously get cured. Then I have no money for the next 20 years. So many questions, and so few answers.

I had coffee with a friend today. She has had health problems her whole life, and has a wealth of health knowledge. We chatted about different treatments and possible actions. I guess it made me feel better knowing I wasn't the only person in the world with problems. :-)

Day 1 - A talk with the surgeon

Afternoon

My first trip to the plastic surgeon is over. She specialize in melanoma surgery. Her name is Andri Neuman.
She talked well and answered many questions. 
Normally they try to remove any melanoma skin, as shallow as possible, and still get 100% of the possible cancer cells. My sores were very deep. She says that makes it much more difficult to get all the bad cells. She also said that Angiosarcoma is bad news, It spreads quickly through the blood, NOT the lymph system. I hoped that the lymph blockage would trap the cancer in the lower left leg. Not so :-(
 The words "Poorly Differentiated" are especially bad news. That means a much larger and deeper  incision will be necessary. She wants to remove a patch of skin 26 x 18 cms. That is most of the way around my leg. The deepest biopsy wound is about 1 cm deep. They talk about 1-2 mm being considered deep. Also the "Poorly Differentiated" and the "brisk mitotic activity" means that the sores may reappear in the new grafted skin.

 She said the one wound that was basal cell carcinoma, was a non issue, and that type of cancer seldom gets worse or spreads. Removal of it, is final removal of the cancer. The other four wounds are the problem.

She also said that if she has to go deep, a simple skin graft will probably not take. There will be too much blood and wound goo for the new skin to get a grip and start healing. So she said that she would probably take the bad skin and bad muscle and veins away, and apply a VacPac. It is a large bandage that is made of plastic, and hooked up to a vacuum pump to supply a constant sucking to the wound for about 5 days till the wound gets cleaned out and dries out, THEN she will do the skin graft using skin from the thigh. 
 She said I should be able to walk around to the shops with the VacPac on, but will have to carry the battery powered suction machine with everywhere for about 5 days. She said the use of the VacPac first should also reduce significantly the hospital time after the actual skin graft.
 
 http://www.sbu.se/en/Published/Alert/Vacuum-Assisted-Wound-Closure-Therapy/
 
 Her concern about the large amount of muscle and skin she will have to remove, lead her to decide to do the oncology tests first. If the cancer has NOT spread past the lower leg, then she will want to be 100% to get everything, so as to possibly stop the cancer once and for all. If it has already spread, then getting every single cancer cell will not be as big a priority. That is like closing the barn door after the horse has run away.
 Also there is a thing called "sentinel lymph glands". There are many tiny lymph glands throughout the body. By checking these with a PET scan, it will tell if the cancer has spread out, and maybe how far. If the spread is in a finite area, then she may want to extend the area she removes, to include the small lymph nodes..
 
 So she decided to send me to the oncologist first, before she operates. So on Tuesday the 11th I see Dr. R Marais.
  Dr. Marais and Dr. Neuman chatted about me for 5 minutes. It was all in Afrikaans, and Latin. I understood little. 
  The plan is to start chemo therapy, do a PET scan, and maybe a needle biopsy of the lymph glands. Then using this knowledge, allow the skin removal to proceed in the best way.
  Then back to the oncology people to continue treatment.
 
  Getting a Doctor to tell plain facts and make a prediction is almost impossible. I asked questions like what is the survival rate, and what is the chance of an amputation. To all of these she said she did not know. I then used a trick we used with weathermen during my aviation career. I asked her "If in 6 months time you hear that I had to have my leg amputated, would you be surprised?" She said "No".
  I asked "If in 3 months time you heard that I had died from Melanoma, would you be surprised." She replied she would be shocked.
  Then I asked her "What other possible scenarios, 6 months from now, that would be bad for me, would not surprise you." She answered "Lung Cancer".
  That was a bit of a shock. I asked her to explain that. She said that the Angiosarcoma is cancer that is spread via the veins, and the veins are returning blood to the lungs to be re oxygenated, so the lungs will be a prime target for this type of cancer. Another reason she wanted to start chemo sooner rather than later.
  
  This weekend is a long three day one, and I will enjoy it to the fullest. It will probably be my last semi-normal weekend, for a long time.
 

First Post

01:45 August 6 2015
Maddie's Birthday 

Background:
I am a 64 year old male. Retired, but physically active. I walk about 40 km per week. 
In 1981 I was stung by a scorpion on my left foot. I was far away from any medical facility, and only got treatment at a clinic, after about 3 weeks. 
For the last 34 years my lower left leg has been very swollen with lymph-edema. The scorpion sting apparently destroyed the lymphatic system in my lower left leg. 
About 15 years ago I developed a sore on the leg above the ankle. It never hurt, never grew, but never healed. 
In April 2015 my lower leg erupted into many sores. They weaped, and bled lots. I went to my GP and she prescribed creams and wrapping to reduce the swelling.

On 21 July 2015 my local GP referred me to a vascular surgeon. 

On 24 July 2015 the Vascular Surgeon decided to do a biopsy and a lymphogram to determine the cause of the new sores.

On 27 July I was admitted for about 36 hours into Unitas Netcare hospital in Pretoria South Africa. At 12:00 on the 27th I was put under a general anesthetic without any muscle relaxers. I had previously had strange reactions to general anesthetic muscle relaxers. Previously I was very slow to regain control of any muscles. I was conscious and awake, but just could not move for much longer than the anesthetist was happy with, so no muscle relaxers were used this time.
The Vascular Surgeon Removed 5 open sores surgically, and sent the tissue away for analysis. 3 of the sores were stitched closed, but 2 were bigger cuts, and left open. 

I was assigned a wound care lady that would clean the leg every other day, and wrap it tight to keep any swelling down.
On the morning of the 28th I went to the nuclear section of the hospital for the lymphogram. They injected some fluid between the toes. Twice on each foot. The I went into a CAT scan machine every thirty minutes to see how far the fluid was traveling. The good right leg had a steady progression of the fluid up past my groin. The bad left leg had a very slow progression, and the fluid stopped about 3 inches below the left knee.

I was discharged the evening of the 28th. 
I saw the wound care lady every 2 days until I met the Vascular Surgeon again in the morning, 5 August 2015.

 Doctor Fernandes told me there was a total lymphatic blockage 3 inches below the left knee, but the bad news was that the the biopsies on my leg sores were malignant. All 5 of them.
 
 The four new sores were reported like this:
 The tumor cells show large pleomorphic hyperchromatic nuclei with brisk mitotic activity.
 The immunohistochemical profile together with morphological features are compatible with a poorly differentiated epithelioid type angiosarcoma.
 
 The sore I had had for 15 years was reported like this:
 Ulcerated basal cell carcinoma, and is probably unrelated to the other four sores.
 
 With my friend Google, I was able to learn more about what all that meant.
 Angiosarcoma is a malignant neoplasm (cancer) of endothelial-type cells that line vessel walls. This may be in reference to blood (hemangiosarcoma) or lymphatic vessels (lymphangiosarcoma).
Its origin typically readily permits metastases to distant sites. Most tumors of visceral blood and lymphatic vessel walls are malignant. 

Epithelioid sarcoma is a rare, highgrade, soft tissue tumor that has a known propensity for local recurrence, regional lymph node involvement, and distant metastases.

That was bad news, because it means that the cancer will spread (metastases) easily.

It is 02:30, and I just can't sleep. Today I am supposed to go to a plastic surgeon that specializes in cancer skin operations. Dr. Andri Neuman. Then day after tomorrow I will see an oncologist.

Dr. Fernandes said that they usually remove all skin from the calf, and replace it with skin from the thigh. That means I will need to be hospitalized for 10-14 days, and must keep the leg held upright during that time. I fear my lower back will suffer greatly, as I must always sleep on my side at night, or my back pain keeps me awake.

I feel like I have been shat on by a Black Swan.