Day 40 - Leg Tumors

Whew. I walked 12.6 km (7.8 miles) today.
I had a WCL (Wound Care Lady) appointment at 09:30. A taxi, or walking, were my two choices. I opted to walk the 5.5 km to the WCL, and then call a taxi to take me home. I ended up walking home, and doing some shopping.

When we removed the compression stocking, I was so pleased. My leg looks good. Almost all the wounds are healed. The WCL just put on 4 band-aids. She told me I can just replace the band-aids myself every week. :-) No more WCL unless something changes, or new sores develop.

I have never included pictures on the blog because usually they are gross. But the difference is something I want to show you.

 

Before Biopsy

                                                          Today

                                                Before Biopsy

                                                             Today


But the reality is that there are many tumors under the skin. As shown on the Pet scan pictures.

It is way to early for the chemo to have any effect on my leg tumors.
My diet should help with anti-angiogenesis, but not in the one month of my super healthy eating.
 I think the only reason for the healing of the external sores, is the tight compression stocking, and the wrapping of the lower left leg.
 Looking at the PET pictures you can see how the left leg is more swollen than the right. The fat left leg picture is while wearing the compression stocking, and a wrapping. Without either, the leg gets REAL fat.

 Lymphedema is excess fluids and tissue swelling. Lymphoma is cancer of the lymphatic system. Compression eases lymphedema.
 The compression stocking may have allowed the previously blocked lymphatic system to help heal the sores and allowed better blood flow to the sores on the skin.
I just hope it also doesn't allow the angiosarcoma to spread easier in the blood, or into the Lymph system, causing Lymphoma.

We will only know after 12 weeks of chemo, when I am scheduled for a CAT scan of the legs.

Day 39 - Anti-Angiogenesis

I walked a bit today, but was slow and tired. I am still feeling the effects of chemo.

I mentioned to my Brother about me buying a car. He brought up a good point.
His business partner recently died from cancer. For the last year of chemo, he was unable to drive. I may soon not be able to drive and I'll have a nice new car that I can't drive. Duh!
Another reason to get a good car is for when Maddie visits. If she is driving around, then I want her in a better car than the beetle. Maybe I should just rent one while she is here. If buying a car would cost me R50,000, then I can buy lots of rental and taxis for that money.

I spent most of the day wasting bandwidth on my laptop. In America people don't think about watching videos on the internet. But in this part of the world, you pay for the amount you download. I watched many TED talks today.  $$.  One good one was about palliative care at a hospice.

http://www.ted.com/talks/bj_miller_what_really_matters_at_the_end_of_life?utm_source=newsletter_weekly_2015-09-12&utm_campaign=newsletter_weekly&utm_medium=email&utm_content=talk_of_the_week_button

 He speaks about how our health care systems are designed to treat diseases, not heal people. He had some good lines to quote...
Loss is one thing. Regret is another.

When near death, life becomes so distilled and concentrated. No more "do overs". 

At our hospice, we try to make life more wonderful, not less horrible.

An important desire of all patients in the hospice was to be unburdened, and unburdening to their loved ones.

For people with dementia, or Alzheimers, sensory inputs become so important. Like the smell of fresh baked cookies. A pleasure that does not depend on any future, or any past.

Another notable TED talk was: 

http://www.ted.com/talks/william_li?language=en

He speaks about angiogenesis. That is when the body makes new blood vessels. Like when a wound heals, there needs to be new blood vessels.
A cancer tumor cannot grow without a good blood supply. Initially a tumor is small with a poor or no blood supply. If we could somehow limit the angiogenesis, then the tumor would not get enough blood and therefore not enough nourishment to grow.
 He talks about foods that are anti-angiogenesis.
Green Tea, berries, fruits, Turmeric, soy beans, tomatoes, tuna, and garlic. That pretty much sounds like my lunch and supper.

Tomorrow I see the wound care lady to dress the sores on my leg. I bet they are almost healed. I fear new ones will soon pop out. Last time there were some big purple, wart looking spots.
The wound lady is about 5km from my house. With no car, I was thinking of taking a taxi. But I think I will leave home early, and walk there. I can always take a taxi back home if I am to tired.

I am gradually getting better after the chemo. I'll probably be fine on Wednesday morning, when my next chemo infusion happens. :-(

Everything I do now, seems to have an additional emotional element attached to it, that wasn't there before the diagnosis.
I need to concentrate on pleasures that do not depend on any future, or any past.


 

Day 38 - Effects of Chemo

This chemo really knocked me.
I must have slept about 20 of the last 24 hours.  It is like having a cold, or the flu in the way you wake up all aleert and clearheaded, feeling great. Then gradually things wind down till you are tired, grumpy and sleepy. I am pissed off at everything, and get upset by anything. Barking dogs. Neighbor mowing his lawn. Toilet flushing.

I decided to read my book. I found it still in my backpack. My backpack has not been opened since the chemo. My tablet was inside with a dead battery.

I walked to the local shop. I found a large fruit platter for too much money, but bought it anyway. When I got home and went to put it in the fridge, there was already another unopened fruit platter that I had bought right after the chemo.

 I have 3 health salads pre-packed in containers and now I also have 4 fruit salads also in containers. I will have to be a real piggy to eat all that before it goes off, or biodegrades.

Now, another nap.

Day 37 - Talk with another Doctor

I slept very well last night. I think it is still from the chemo. Especially the Phenergon. It is used as a pre-operation sleep inducer. That stuff put me right out. Yesterday, I remember watching the nurse change the IV to the Phenergon, then nothing for about 45 minutes. I think it must still be in my system. I have been off balance a few times today. But that might just be me.

The jerking around may have been the Paclitaxel. I need to ask about that, as that was the worse side effect. It seems to have worn off, and I had no trouble with it last night. Usually jerking is a sign of electrolytes problems. But it would not stop this quick if that was the case.

I called the Wound Care Lady and told her that it was now 11 days since she dressed my wounds last. She says that there will probably be nothing much to do. Last time she only had to put on big band aids. The compression is working to help heal the wounds.  I'll see her on Monday. Then Tuesday is blood test, and Wednesday is chemo again.

I keep thinking that I want a second opinion regarding the treatment I am getting from the Oncologist. Today I went to my local GP just down the street. I took all my PET pictures with me.

My GP's name is Nadia. She is where I go when I need small stuff looked at. She was the first to see the sores on my leg. She initially thought it wasn't to serious as I had had the one sore for about 15 years. She said if we had done a biopsy on that sore, we would have been fooled into thinking the new sores were also non malignant Basel cell melanoma. She sent me to a vascular surgeon, and that is where the whole cancer story started.

I was not sure why I wanted a second opinion from a GP. I should have wanted to go to another Oncologist. Surgeons want to cut out cancer, that is how they feed their families. Oncologist want to poison cancer, and the radiologists want to burn the cancer. All of those, are sort of guaranteed income for the relevant Doctors. If I die in a few months, they still made their money. They make a once off packet of money. My GP on the other hand will make more money if I live another 20 years. When I explained this to Nadia she agreed, and said that she has heard all that before.

Nadia then told me about her mother. Her mother is fighting breast cancer, for the second time in 3 years. Her mother recently told her almost the same thing about Doctors. Her mother felt that the care she received from Doctors, was proportional to the short term income potential. Her mother also said that in her day Police and Doctors were there to help. Now days Doctors are there for the money, and the Police are just organized crime.

Nadia said that radiation before surgery was a bad thing, so stay away from radiation till after surgery. She also said that some doctors are reluctant to do surgery after chemo, because a weak immune system means greater chance of sepsis. Regarding amputation, she said that if any cancer cells have spread, and are to small to be seen on the PET scan, then chemo should be started quickly before any surgery.
I told her about many web sites that say that Angiosarcoma if it has not metastasized yet, should be surgically removed quickly to prevent spreading. Why don't my doctors want to consider that? They want to wait 12 weeks, then only cut out what they can see. Surely amputation would be best, and done soon to prevent metastasis.

She said she would call around. She has friends who are surgeons that work on cancer patients. Maybe they don't know about amputation, but they have lots of knife time with cancer. They should be able to give good advise. She will call me back soon. She may send me to another oncologist. I told her that I didn't think Medical aid would pay for a second opinion, but I would gladly pay cash for a consultation.

The guy overhauling the beetle starter went away for the weekend leaving a note saying he will try to finish on Monday. Grr!
A friend of mine owns the beetle. He lets me have exclusive use of it. I talked with him about me getting a new car. He said to just do what I thought best. First I need to find a car I like. I will pay him and he will buy it in his name, and he will just transfer the money to the car dealer. It will technically be his car. He says he doesn't want to have both cars, so I should sell the beetle.  I need to fix it up first, before selling it.

So I will be transport-less all weekend. I will also have a problem with the wound care lady on Monday . 
But I now have enough cash to make problems like that disappear.

Day 36 - First day of Chemo

Last night I just laid in bed till 01:30. Then I got up and read.
Back to bed around 03:30, then up at 5:00. I owe the sleep bank.
The taxi arrived and we crawled in traffic to the hospital.
Chemo only starts at 10:00, but I need a blood test first. The test results will take about 2 hours.
By 08:00 I am having blood taken. They tell me to go away and come back at 10:00.
So here I sit in the hospital cafe, drinking coffee.
------

Evening 19:00

Wow!

Chemo sucks.

A most unpleasant experience.

I now have moments of clarity, followed by long naps.

No nausea, but I am starving.

OK enough of right now,  let me tell you about the day.

At about 10:00 I met with  another Oncologist. Dr. S.Bassa. She explained what was going to happen regarding the chemo today.
The main cancer fighting drug to be infused will be Paclitaxel.  Combined with this will be 4 other drugs to help with the side effects.
Phenergon - Anti histamine that controls nausea, and promotes sleep.

Dexona - dexamethasone is a  corticosteroids. It  reduces inflammation and other allergic type reactions.

Onicit -  used in the prevention and treatment of chemotherapy-induced nausea and vomiting.
Cimetidine - used to treat ulcers, gastroesophageal reflux disease, and heartburn 

Zofer - prevents nausea after chemo. Taken with Onicit.

Paclitaxel is made from tree bark of the Pacific Yew tree. It is an old drug used to fight breast cancer from the 1960s. Annual sales are US$ 1.6 billion.

The lounge where the people getting chemo sit, is very nice. There is a coffee machine and a waitress. The chairs are big recliners. I sat and started reading. A nurse came in and started an IV. Another nurse came in and hung 4 small bags. Each had one of the four side effect helping drugs. The first two were fine, then the Phenergon.
 I went out like someone switched off my switch. About 40 minutes later I awoke and saw that Paclitaxel was now feeding the IV.
 I would look around, then pass out. My body got the twitches. Especially my right leg. It would jump around like a puppet leg. The jerking now kept me from sleep, and I was very sleepy.
A bit later I would look around, and see that the IV was removed. I wanted sleep, but I had to pee real bad. I stumbled to the bathroom. Lots of pee, then stumbled back to my chair. maybe 30 minutes of dozing and jerking more, then I was awake more than asleep.

I tried asking the nurse about the jerking, but my words were all slurred, and sounded like I had on a mask.
I sat back down, and jerked around for about 15 more minutes.

Now I could walk around better. I wanted to be outside. I left rooms and went outside into the parking lot. I walked all around, counting how many Chevrolet Sparks there were. Eight.

Back inside the nurse gave me a prescription to get blood checked on next Tuesday, so the results would be in by Wednesday, when my next chemo is scheduled.

I called the guy doing the repair on the beetle starter. He says it needs a total overhaul, and will cost R1100. It should be ready Friday afternoon.
I need to see the wound care lady, as it has been 10 days since the last cleaning. But with no transport, it will be difficult.

My friend gave me a ride home, and handed me about R10,000. That should tide me over.

Now I need to sleep again.

Day 35 - Chemo Approved

I got up early, then took a nap.
I need reliable transport to go for the 12 weeks of chemo.
But before I go car shopping, I need to get the beetle running. It won't start. It feels like the starter is bad.

At 09:00 I am jacking the beetle up and stacking bricks under it.
I crawl under and started testing the starter. Even with jumper leads, I can not get it to turnover.
So I remove the starter. My back is starting to complain.
I get the starter on the bench, and it doesn't work at all now.
I call around and find an auto electrician close by. I walk about 3 km carrying the starter. Now my back really is not happy.
They say they can fix it in 24 hours. It will cost about 1000 Rand.
I have about 220 rand total cash, and about 500 in the bank. Note that it is the 9th of the month. :-(
I call a friend and whine, so he puts 5000 Rand in my account. But it will take a few days to clear.
I walk home in a round about route, going to many used car dealers.  I was looking at 2006-2009 VW Polos, and Toyota Carollas. All about 65,000-85,000 Rand. 4.5 to 5.5 Krugerrands.
Then I see 2 different Chevrolet Sparks one for 3 KR and one for 3.5KR. I start thinking about giving my friend 3KR and have him buy the car in his name. Then when I die, he just keeps it.

I arrive home and get an email from the medical aid saying my chemo has been approved. They approved the following for 6 infusions over a 6 week period.
Infusion with 0.2u filt       
Cipla paclitaxel vial 21.7ml  (130 mg) 
Cimetidine 100mg/ml 2ml        
Zofer
Onicit vial 5ml
Dexona ampoule 1ml
Phenergan 1ml
Sod chlor 0.9% 200ml

I only recognize the sod chlor .9% :-)

Then the phone rings. It is the Oncologist saying there is an opening for chemo tomorrow, do I want it? YES!
The Oncologist says to wear comfortable clothes. Bring a book and music with headphones. Bring some water, and small snacks.
I have to get there tomorrow at 08:00 because they have to do a blood test first, and the results will take about 2 hours. Then chemo at 10:30 for about 1 hour. Then I will sit around waiting for bad reactions and side effects. I should leave by 13:30 or 14:00.
She says I should be able to drive, but having someone else drive is always better. Since the beetle is up on bricks, I will use a taxi both ways. But I do not have enough cash for the taxi both ways. I'll have to make a plan.

So now I will drink plenty of water, and eat healthy. I am anxious about the chemo.

Day 34 - PET scan results

This morning I got up early, and got ready to go visit my Oncologist.
My car would not start. The solenoid on the starter seems jammed. I even brought out a battery from my solar system and tried a jump start. I ended up taking a Taxi to the hospital, and I walked home. 8.0km.  I will need to waste time, and money, looking for more reliable transport.

I am just back from my appointment with the oncologist.
She says the Pet scan results show no indications of any cancer other than in my left lower leg.
While not having any metastasis yet, is a good sign. Of all the news possible from the PET scan, this news is the best. But for some reason that isn't as comforting as I had hoped. 

I will have chemo for 12 weeks starting Tuesday. The chemo will be for two reasons.
One reason is, so that any new cancer that starts, is in a chemo rich environment straight away.
The other reason is as a neoadjuvent. A neoadjuvent is a procedure done before another main procedure. In my case before surgery. The neoadjuvent chemo will be to try to shrink the tumors, so the surgeon can better find and remove all the tumors in my leg.

She was unable to answer most of my questions.
I asked if this cancer will be the cause of my death. She said that right now I am healthy. If the cancer never spreads, then I will not die from this cancer. But Angiosarcoma is very fast spreading, and aggressive. What we have today, may not be what we have next month.

I asked how often we will check the spread of the cancer. She said that we can do CT scans of the leg at regular intervals, but Pet scans are very radio active and they will not be used so often. She said to plan on a CT scan after every course of chemo. +-12 weeks.

I asked about amputation. She said that it would help little as Angiosarcoma is carried by the blood from a tumor. I have many tumors on my leg. Each could have sent hundreds of cancer cells throughout my body already. Removing the tumors now, will help reduce any more cells being spread, but will not reduce the ones already spread.

I asked why not use Immunotherapy instead of chemo. She said that Immunotherapy has to first have a tumor to fight. I have none outside my leg and surgery should remove all the ones in my leg.

I asked if chemo will be able to kill all the cancer. She said the purpose of this treatment is only to try to slow down the rate of metastasis, or spreading.

I asked about the surgery. She said that it depends on the effectiveness of the chemo. The surgery and skin graft may require a hospital stay of 5 days. Followed by 2 weeks of keeping all weight off the leg, and keeping it elevated at all times. Probably in a wheelchair.

I have been reading up on Angiosarcoma more.

Angiosarcoma is a rare, malignant subtype of sarcoma that originate in blood vessels and the linings of various blood-filled sites throughout the body. This sarcoma subtype is an aggressive cancer with a strong tendency to recur locally. Furthermore, this cancer often spreads quickly throughout the body. Prognosis is usually poor.

The most widely known cause of angiosarcoma is lymphedema, the swelling of an area of the body due to the collection of fluid.  (My leg was swollen for 33 years after the scorpion sting.) 
 It can look like a skin infection, a bruise or a lesion that does not heal. It may have a violet colour. Deep-seated tumours may go unnoticed until they begin to affect surrounding tissues and organs. (This was my case for about a month before the sores broke out.)

Angiosarcomas develop so gradually that they are often well established by the time of diagnosis. Diseases such as this are defined by the term insidious. Furthermore, this sarcoma subtype does not respond well to most traditional  treatments such as chemotherapy, radiation therapy, steroid administration. The combination of aggressive growth, few treatment options, and extreme rarity makes angiosarcoma one of the deadliest cancers.

A good metaphor is that of a factory sitting on the edge of a river. When the factory (the sarcoma) outputs toxins into the river (the bloodstream), they don't stay near the factory. Instead, they affect areas further downstream. In the human body, cancerous cells can split from the angiosarcoma, and travel quickly to all parts of the body by using the high-speed circulatory system. If several cells split from the tumor, they can form tens or even hundreds of tiny, nearly undetectable tumors all over the body. These tumors are extremely difficult to treat, and can often be fatal.

Most treatments of this cancer are not intended to be curative. Medications are often prescribed to reduce symptoms such as fatigue, anemia, and pains. Various surgeries are usually performed to promote a healthy appearance and a more comfortable day-to-day life for the patient.

So...Am I glad I don't have any cancer anywhere but in my leg? Yes I am, because this mean, that this cancer will probably not kill me.....this month.