Day 55 - A long Blog on the fourth chemo day

10:45

This blog starts from the chemo chair. I just had coffee and a cookie. :-)

Today is busy. All chairs are full. The one lady I see a lot (colon and liver) is here. . The lady next to me is breast. The old man is prostrate. One lady I talked to before is leukemia.
People seem to identify with their type of cancer. They all give a funny look when I introduce myself as angiosarcoma. No one has ever heard of it.

I asked the Oncologist about the results of my latest blood test. She said all my results are withing the normal range, and nothing needs to be changed. I told her I was fatigued all the time, and maybe that was caused by low Red Blood Cells. She laughed and told me my Red Blood Cell count was fine.

---

16:30

Finally back at home. I drove the beetle both to, and from the hospital. Not really a good idea, as I have some balance problems today.

 On the way back from chemo, I drove past to the Blood Lab, and collected all my blood test results. Back at home I had to go to Google school to learn what all the results mean.

Some things I learned:

White Blood Cells (Leucocytes) are made up of five different types of blood cells. The white cells include neutrophils, monocytes, eosinophils, basophils and  lymphocytes.

  Neutrophils.. The most abundant white blood cell, constituting 60-70% of the circulating leukocytes. They defend against bacterial or fungal infection. They are usually first responders to microbial infection; their activity and death in large numbers forms pus.

  Eosinophils.. This count fluctuates throughout the day. It rises in response to allergies such as asthma, hay fever, and hives, and parasitic infections.

  Basophils.. Chiefly responsible for allergic and antigen response by releasing the chemical Histamine causing the dilation of blood vessels, and releasing Heparin, which is an anticoagulant that inhibits blood clotting and promotes the movement of white blood cells into an area.

  Monocytes.. They present pieces of pathogens to T cells so that the pathogens may be recognized again and killed. ( I don't know what that means.)

  Lymphocytes.. More common in the lymphatic system than in blood.  They include T cells, B cells and natural killer cells.

Reading the results of the Blood Tests,

I see my Hemoglobin (Red Blood Cells) and Leucocytes ( all white blood cell types ) are down below what they should be.

Hemoglobin should be between 13.8 and 18.8 g/cL. Mine is 12.7.

My Doctor lied to me!

Leucocytes should be 4.0  -  12.0 (10^9/L) mine was 3.27

My Doctor lied to me!

My Neutrophils and my Lymphocytes are both at the lower end of the allowed band.

The Hemoglobin low count is called anemia, and can be caused by bone marrow suppression because of chemotherapy.

The low White Blood cell count means I have a greater risk of infection, and should avoid crowds, and wash my hands often. My Doctor should have explained this.

 --

I also found this online. They are mentioning ways to reduce infections. Talk about confusing information!

 

Avoid the following foods:

• Raw fresh fruits or vegetables
• Raw or rare-cooked meats, fish, and eggs
• Food prepared in unknown conditions
• Fast foods, deli counters, and salad bars (including macaroni salad and pasta salad)
• Soft or frozen yogurt with active cultures
• Fresh or dried herbs or seasonings that are added to food after cooking (pepper from individually wrapped packets may be added after cooking)
• Dried fruits and raw nuts

This list sounds pretty healthy to me.

I have an appointment with the surgeon on Monday. The Basil cell tumor on my leg is growing. I want her to see if it should be removed soon, or wait and remove it with the rest of the leg tumors.

I have been dropping things. One plate, one cup of coffee, and now my cell phone. I don't drop stuff..ever. :-( 

Yesterday I went to the taxi company I use, and talked to the manager about getting a special rate if I uses them 8 times a month. They said "NO". If I use the taxi for all Chemo transport, it will cost me R1200 a month (that is almost one solar panel). They said they had a woman that uses them to transport her for dialysis three times a week. She lives farther and pays more. Her bill each month is R4800. She also does not get a special rate.
---

I read this on another cancer blog.
https://clinicaltrialanderror.wordpress.com/
This lady has been there, and got the t-shirt. She explains it so well.

I felt like I had gone down the rabbit hole and no one had followed. And that was okay. I felt safe. I was alone, but not lonely. I was exploring and didn’t want to be disturbed. But I was teary because I felt as though I was a circle peg, being pushed into a square hole. It didn’t feel right. I have come back to this world and it’s too fast, too hard, too cold, too clinical. I am not sure where I fit anymore. I want warmth, gentleness, kindness and love. I want soft edges, blurry lines, luxuries. I want a support I can’t describe. I want health. I want no pain. I want peace. I am desperately trying to re-establish a life but running on empty.
 Conversations take up precious energy and I don’t like answering the same old questions. Did you get any sleep? How do you feel? What do you need? What can I get you? Do you want visitors? I don’t want my house filled with people. I don’t want to speak. I am extremely comfortable with myself. Maybe too so.
---

Day 54 - Going Bald

09:00
Another blood giving day :-(
So many needles.

I slept from 22:00 last night till 07:30 this morning. Almost normal. But then tomorrow is chemo day, so I should be almost normal.

Lots of hairs all over my pillow. Maybe some of my hair is falling out.

Yesterday and today I am coughing up thick, chunky, white things about the size of a piece of corn. Maybe 5 yesterday, and 3 so far today.
So I asked/searched my "friend" Google about.... "Chemo cancer coughing white chunks" and got 158,000 hits. Isn't that amazing?
Consensus is that fast growing normal cells in the lungs, are being killed by the chemo. I hate the fact that chemo is killing healthy parts of me. But unfortunately, that is where the big money is for the medical profession.

I also found a very interesting article that said chemo made one lady very dehydrated. It made her very tired and sleep all the time. Even though she drank a few liters of water a day, she had to have an IV drip to recover.  I already force drink 2 liters a day, every day. I will up my water intake by 2 liters a day more, and see how that changes my tiredness.

My new solar system box is working great :-)

My mission for the day is to try to find new, better seat belts for the beetle.
---
19:15
I combed my hair before going out this afternoon, and found lots of hair in the comb. :-(

I bought seat covers and seat cushions for the beetle. Sitting it it is now much better.
Seat belts will be harder to upgrade, as they changed the design in 1980 to 4 attachments instead of 3.

Fantasy football is a time consuming operation this year. My team sucks. I did win last week by a substantial margin. :-) I am 1 win - 2 loose.

I tried to pull out some hair from my head, and got a hand full. It left a small bald patch. So I decided to cut all my hair off.

    




















I was going to lable the pictures "before" and "after", then thought Duhh!
Of course cutting my hair short won't help that much. Now I will just get smaller hairs everywhere. :-) I need to shave my head. And my eyebrows...and my pubes.

Today was a pretty good day. :-) So it must be chemo tomorrow. :-(

I called the Hospital and asked about overnight parking. They say they charge R35 a night. So if I drive the beetle there, and walk to fetch the beetle a few days later, it will be much cheaper than a taxi.

----

Day 53 - A better day

I slept just over 12 hours last night.
All day I was tired. But around 15:00 I started feeling good and went to the local solar store to dream :-)

The VW scandal is interesting. It was very sophisticated, and intentional rewriting the code for the emission control computer.. Elon Musk says that it proves that the internal combustion engine has reached it's peak. They can't improve it without cheating. Time for electric cars :-)

Tomorrow is blood test. Wednesday is chemo.

I am going to have the oncologist look closer at my arms. They really look like my leg did just before the sores broke out.
Also my leg does not respond to wrapping. A month ago I could use the stocking and wrap it to make it get skinny. Now it remains fat. I don't think it is fluid making it fat anymore. I fear tumors.

I took a sleeping pill at 21:00 and it is 21:45 now. So I better head for bed.
----

Day 52 - Can't sleep

I am wild awake at 04:35. I decided to just get up.
What a terrible night. I am sore, and tired.
I went to make an egg to take my morning pills, and saw all the pills from last night laying there by the computer. Including the sleeping pill. Duh!!
It is a good thing it is Sunday.
--
I went to bed at 06:00 and slept till 11:00.
I worked on my solar system box, and 95% finished it.
napped from 3 til 5.
Walked to the shops for some real food. Bought fried chicken pieces.
now 17:51 Just now took sleeping pill.  I am so tired, I can't even think.
---

Day 51 - Leg dressing and shopping

The new sleeping pills seem to work. I slept exactly 12 hours last night.
I had such a long list of things to do.

First to do was a good shower. My leg dressings also needed changing. I removed the compression stocking, and all the bandages. My leg looks better than my arm. A LONG hot shower felt great, and I washed my leg many times.
I then re-applied the bandages, and the compression stocking. The only open sore on my leg is the old basil cell sore that has been there 15 years.

At chemo I use my cell phone to chat to Maddie, surf the web, do my blog, and listen to music. Last time I left home with cell charge at 100% and got home with 16%. So today I went to the Chinese mall to buy a power bank to charge the cell phone. It is a small battery pack that the cell phone plugs into to recharge it.
 A 10 Amp Hour (AH) pack would recharge my phone about 3 times. They make from small 2 AH up to 19 AH cell phone re chargers.
One place I went to had many. One 10 AH caught my eye at only R300. The man behind the counter said it was junk. :-) I asked why he was selling junk, and he said it was old stock, and most he had sold came back with angry customers. He showed me a good 10 AH one that was a bit pricy. I got online, and found that Amazon gave it a 5 star rating. I told him it was a bit to much money. He then said he would upgrade it to a 12 AH one for the same price. I said OK. As I was leaving, he called me back and tossed me the cheaper 10 AH junk one. He said I can keep it, but to forget where I got it. :-) So I am very ready for the next chemo session..

I worked a bit on my solar system box. It is coming along.

I have been taking the anti-histamine pills, but my arm still looks splotchy.
----

Still wild awake at 2:52
---

Day 50 - Another boring day

Walking is a good thing, because it moves the chemo around more, and can spread it through the body better than resting. Since my original tumors are in muscles, that is good advise.

Maybe walking can reduce the effects of chemo sooner. So for the second day in a row I have walked. Today I got very tired exactly half way, and had to sit in a restaurant to rest.

I got my prescription sleeping pills, and some antihistamine pills to try to replace the Phenergan they are not giving me because of the jerks. My arms are covered with pink blotches. They look suspiciously like my leg sore did before they erupted. I sure hope it is only an allergy.

I worked a bit on my solar system box. I would love to buy a nice one. But they are about R8000. That is a lot for something I don't really need.
---

Day 49 - Boring day

I got up early, then took a 4hr 30min nap.
On the internet I read how some doctors say that exercise helps spread the chemo throughout the body.
So even though I was feeling poorly, I went for a walk. Everything is closed, as it is some holiday.
Feeling weak was my excuse for an anchovie toast at a restaurant.

It is now 02:10 in the morning and I am finally feeling sleepy.
I took my wimpy sleeping pills, and tomorrow I want to get the new sleeping pills the doc prescribed.

I also want to build my solar system box.
--

Day 48 - At third chemo

I am writing this on my cell phone, while this sitting in the chemo chair with the IV plugged in. This is my third chemo.

 My chemo was scheduled for 15:46, but they called and asked me to come at 12:30 instead. I arrived at the hospital at 11:30, with time for a cup of coffee.

I was very busy this morning.
 My new solar panel is wired up, and working. I also drove to the local electronics store and bought a digital amp meter. It also is working.
Then a call to the taxi service to give them the new times.
My current solar installation is a rat's nest of wires. What is needed is a box with the meters and the solar regulator on front. The wires and shunts should be out of sight, inside the box. Also needed is a switch to turn the led display off. Maybe a switch to be able to change the battery "out" amps into battery "in" amps when I want to.

I had a chat with the oncology lady before the chemo. She looked at the red spots on my arms, and says that is a typical reaction from the Paclitaxel. She said the Phenergan is supposed to stop that. But the Phenergan gave me nerve twitching. So today she prescribed me Celestamine. It is an antihistamine to stop allergic reactions. I have to take one pill the day before chemo, one the day of chemo, and one the day after chemo.
She also said that sleep disorders are common with chemo. She said I should try to sleep more the days before chemo, so I won't need as much sleep right after chemo. She prescribed some sleeping pills. Dormanoct.
She gave me a free jar of cream to rub on my arm rashes.

My friend is supposed to collect me after chemo, but he is working. So he is planning on collecting me only after 5. I may have a long wait in the restaurant.
I am getting sleepy. Later
---
I woke up and saw that my Paclitaxel dosage is now 165 mg instead of 135mg. I asked why and the oncologist said she talked with the surgeon, and they decided to maybe only do 9 chemo treatments before doing a cat scan and the operation instead of 12 treatments. So maybe I am a third through this round of chemo. It takes longer to infuse 165mg than 135mg.
---
I only finished chemo at 16:00. My friend will only collect me at 17:00. I have along wait. Maybe another cup of coffee.
--
My friend called, and is stuck at work. I called a taxi.
---
I'm at home now. The taxi came at 18:10, and I was home by 18:30. Long day. Now for a pre-made fruit salad, and bed.
---

Day 48 - A great Day

BC (Before Cancer) I seldom slept more than 7 hours a night. But now the day after chemo I sleep about 18 hours, and it gets less each day/night until I sleep 7 hours the night before chemo. I think I will start a log and see how much of my life is spent sleeping because of chemo.

This morning I felt great, and was zooming all around most of the day.
First was onto the roof to change my solar panel mount to accept another panel.
Beetle started up perfect.

Then to do a blood test, to know what needs to change with the chemo tomorrow. I am getting poked with needles twice a week, every week. I hope my veins hold up.

Then I went to get one of my suspect solar batteries checked at a battery store. The battery checked out fine, but getting old. The battery store turned out to do solar installations. They use very good equipment, and therefore are very expensive. Of course they only do off grid installations because they ARE a battery shop. :-)
They have a super great big box. (Note: birthday is in April) It is a 5KW pure sign wave inverter, and an MPPT solar charge controller, and a power grid UPS, and a 15 amp battery charger, and it chooses between solar or the power grid depending on the amount of sunlight. Only R18,000. Shriek. But, very nice.
They also have some very good batteries for solar systems. I use cheap car batteries, that don't last long. Most car batteries are good for a year. The best solar deep cycle AGM batteries last 6 - 10 years. The good batteries they sell are about R3300. Shriek again. My cheap car batteries are R700 each.
Then to the drove Chinese mall. Last year I shopped lots for the best buy in solar panels, and ended up with a 150 watt from the Chinese mall. I bought another one today. With my new modification to my solar panel mounts, it took me 15 minutes to mount the new panel. The wiring hook up still needs to be done.

Then to the local fresh food place. I bought everything for my health salads.  I drove home, and made a HUGE salad, and packed up 3 Tupperware for the next few days. After chemo I don't eat very well. Now all is prepared in advance.


 Tomorrow morning before chemo,  I want to go buy an amp meter to tell the current from the panels, then hook up the new panel.
 I will take a taxi to the chemo, and my friend will collect me after and take me home.

A good day. :-)
---

Day 47 - Stupid people

Today my friend invited me to lunch. I was feeling very tired and declined. An hour later he calls, then shows up. We chat for a bit then go to lunch anyway.
My body told me to have a salad, but my soul wanted real food. A beef burrito, with lots of Tabasco sauce was the result.. It was GREAT! But maybe not a good idea, as I have had diarrhea for a few days.
We then went shopping for some food.
 During the day my forearms itched. When home, I looked, and both forearms are purple with red dots all over. They look like my leg did a month ago. Tumors could not have grown that fast. It must be an allergy. Both places they put the IVs in the crook of my elbow are bruised. Maybe I need a chemo port put into my chest.

Getting out today was good. I wanted to do many things today:
Take the beetle in to fix the oil leaks.
Work on my solar panel mounts.
Read more about Ethereum.
None of these happened. I was too stupid, too tired.

It is said that... "Stupid people don't know they are stupid."
This is not always true.
I am stupid, and I know it. My brain cannot process information with the same ability, it could a month ago.
Chemo Brain.

Normal stupid people are born that way, and therefore have no comparison of their stupidity. There are many observations that indicate I cannot think as well as a month ago.
My last 23 "Challenging" Sudoku games have taken me about 15% longer than a month ago. My ability to design train signal networks in OpenTTD is not as precise as a month ago.

Today, while reading a white paper on Ethereum, (a blockchain technology for smart property), I wanted to find more about the author, so Googled his name. What opened up was a web site about Staffie dogs, and how they need a different training method because of the generalized personality of Staffies.
It was interesting. Then I hung up laundry.
After hanging the laundry, I sat down to finish reading the white paper. It was gone, and there were now many links to dogs. 
Meditators call this "monkey mind". The inability to remain focused on any train of thought.

Chemo may extend my life by a few years, but is it better to live 6 months with clear thinking, or 2 years as a fool?

Cancer sucks.
Chemo sucks.
Stupid people suck.

I am all three.

----

Day 46 - I am a hermit

Today I never even opened a window or door. The burglar alarm is still on from yesterday.
I had great plans to work on the solar panel mounts.

I have been thinking about the software conference yesterday. There were so many good, young people there. Maybe there is a future for this planet.

My leg has been itching for a few days. I decided to remove the compression stocking and take a real shower with only the band aids on my leg. It was great. Old skin came off in piles. I then had the pleasure of putting a clean compression stocking on by myself. That was not easy, but I am getting much better at it.

I am becoming more withdrawn. Sometimes I get so many calls and well wishers contacting me, I wish they would just leave me alone. I need to be more trusting, but I don't do that well.

I have been playing a computer game that I used to play some time ago. It is called OpenTTD. It creates a fictional world, and you have to build a train system to connect all the cities and industries. Very good to kill time. Not so good, for someone with not a lot of need to "kill" time.

I am running out of food, so tomorrow will be a shopping day. Maybe lunch with my friend.

I am not sure if the anti-nausea pills are working, or that I just don't have nausea now.
---

Day 45 - Get out of the house

A sleeping pill helped me sleep last night. Maybe I need to ask the Oncologist about getting some stronger sleeping pills. Maybe Dormicum. The sleeping pills I am using now are wimpy.

I drove the beetle to the train station, and took the train into Pretoria. At the Pretoria train station is a large building they rent out as a conference center.
A smart friend of mine was giving a speech today at a conference there, for Software Freedom Day. The conference was about Open Source Software. Her speech was about how the taxpayer pays so much money to support research in South Africa, but the taxpayer does not have access to the results of the research.
 Another speech I was very interested in was on Ethereum. Ethereum is a blockchain based cloud application to facilitate the building of peer-to-peer contracts. I am interested in Blockchains. They are the future of many important aspects of our life. Banking, Sales, Contracts.

Today I was not the sharpest, but at least I wasn't embarrassingly stupid.
About half way through I started feeling poorly. An apple and some nuts helped. On arriving home I napped for about 3 hours.

At least I got out of the house. I needed that. I also need to walk more. I feel tired all the time, and I worry about fading out while a long way from home. I may need to do something like walk around the block 10 times. But I usually walk with a purpose, like shopping.

My compression stocking itched all day. Maybe I didn't get all the soap out of it when I showered. Tomorrow I'll put on a clean one, and wash this one.

Even I am bored
by this days blog.
---

Day 44 - Still Recovering from Chemo

10:30
 I just got out of bed. Today I feel like a real cancer patient.
Chemo sucks.
I only got into bed last night after 00:00. I took sleeping pills, and they seemed to finally work. 10 hours sleep was a good thing. Now I am just stupid and tired.
I just turned on the geyser. I stink and need a shower.
My mouth is sore, and I am nauseous. I just took one of the doctor's fancy anti nausea pills. I asked her if it was like Enos. She said "Like Enos times 10".
I ate the last of the fruit salad I made a few days ago. It hurt my mouth. I hope it was just the chemo destroying my mouth cells, and not the salad being rotten.
I should be working on the beetle. I need to get it running. But first a nap..
-----

17:30
I had a 3 hour nap, then felt ready to zoom and finish the beetle starter. Being clear headed and rested, I was able to get the starter in and working in about 2 hours. Now the beetle runs fine :-)
I cleaned up, then showered. I was feeling tired, and decided that the trouble to keep the compression stocking and dressing dry was just to much work, so I just showered, and got everything wet. It will dry. It was nice to take a shower like a normal person.
----
22:00
I just chatted with Maddie. She has been house hunting on the coast in a town called George.  She will move there within a few weeks.
The beetle seems to run OK. It needs brakes fixed, oil leak stopped, and fuel tank repaired.
 I want to use the beetle to go to the train station tomorrow early to catch a train and go to a computer fair in Pretoria. My friend's sister is giving a speech.
I hope I feel up to it. I am very tired.
I took a sleeping pill, and want to get asleep early.
Sorry if I sound stupid. But I am.
Chemo Sucks.
---

Day 43 - Recovery from chemo

Last night I slept less than 4 hours in the last 36. I am very tired, but not sleepy.

For breakfast I had an egg, and half a cup of coffee. Noting by mouth till tonight where I had spinach with a small steak.

I took 2 sleeping pills, and they finally seem to be working. It is almost midnight.

I sent off the claims for 2 doctor visits.

I walked to the close pharmacy and got the anti nausea pills the oncologist prescribed. I am still nauseous.

So all in all, I did nothing, and can't sleep. Maybe I should have used the Phenegron.

I tried napping, but I just lay there.

Day 42 - Second Chemo

Today was my second chemo treatment.
The taxi arrived at my house 30 minutes late. Grr!  They gave the ride for free because they were late. :-) I used the taxi also to pick up the last needed parts for the beetle starter while on the way to the Hospital.
My friend gave me a ride back home after the chemo.

I had a good talk with the oncologist. She explained the blood test, and said that all my blood counts, liver and kidney results were good.

Normal Paclitaxel dose is 175 mg - 225 mg every 3 weeks. My oncologist says that she chose 130mg every week because it has shown less white blood cell loss, and therefore less chance of Leukemia.

I got online and found a recommended dosage for Paclitaxel:

 Initial dose was paclitaxel 100 mg/m² infused over 1 hour weekly until disease progression or intolerable toxicity. To date, significant activity and a highly favorable toxicity profile have been observed with 1-hour paclitaxel £ 100 mg/m²
Paclitaxel was administered via 1-hour intravenous infusion at an initial dose of 100 mg/m² every 7 days without interruption. Treatment was administered in the outpatient clinic with a physician or chemotherapy nurse present during the first 15 minutes. Vital signs were monitored after the first 15 minutes. All patients received standard prophylactic antiallergic premedication before each paclitaxel infusion. This consisted of dexamethasone 20 mg, orally at 12 and 6 hours before paclitaxel administration and diphenhydramine 50 mg and cimetidine 300 mg, intravenously, 30 to 60 minutes before paclitaxel infusion

That is almost exactly what happens with me. Except my dose is 135mg every 7 days. Dosage is dependent on weight.

I asked why my leg sores look all healed. She looked at pictures the WCL and I took on Monday. She said that the chemo, diet, or compression had nothing to do with the sores going away.
 I was SOOO wrong about the compression being the reason the sores went away.
 She says that angiosarcoma located in the legs, it will flair up, then recede, then flair up and recede. She says I may not be so pleased with the look of the leg in a month or two. But if the sores do not come back within the next 2 months, she says it will be due to the chemo.

We also talked about why I got the jerks last time. She blamed the Phenergan. It also made me pass out last time. So she cut the dose in half. She said I may stay awake this time. Then just as the nurse was starting the Phenergan, the oncologist came in and said they would try giving me no Phenegran. They would watch close, and I must tell them about anything that felt abnormal. The Phenergan is there to stop any allergies that the Paclitaxel may produce.

Everything was much better this time. I got drowsy, but never napped. Then about 1/4 of the way through the Paclitaxel, my left hand became numb. She checked and said that maybe they needed a little Phenergan. But they slowed down the Paclitaxel infusion speed, and feeling came back. So all in all, it was a better chemo session than last time. I think that next chemo will be even better.

I still would have battled to drive right after, but 2 hours later I was fine.

I also learned that chocolate cream cookies and coffee must be good for cancer, because they serve them during chemo. :-)

Day 41 - Blood Test

Today was a blood test. The oncologist will use those results to determine if the chemo mixture needs to be changed any for this next chemo treatment. I'll get a blood test one day before each chemo treatment. I do my second chemo treatment tomorrow at 13:30.
The beetle is still starter less, so I will take a taxi cab both to the hospital, and from the hospital.

One thing they look for is the red blood cell count. This will tell if your blood can take enough oxygen to the body. If it is low, then you have anemia, and feel tired all the time.

Another thing is the platelet count. Low platelets means the blood won't clot as well. So I will be at risk of bleeding lots. I did have a bloody nose the other day. My first in years.

The last thing they check is white blood cells. These are used to fight disease. Low blood cell count is called Leukemia. Chemo gives you Leukemia. So we may stop the tumors from growing, only to die from Leukemia.

Both platelets, and white blood cells come from the bone marrow. To me it seems that we should be doing everything to improve the white blood cell count, and the platelets. Not trying to kill them. We should be trying to improve the bodies ability to fight disease, not stop the bodies ability to fight disease.
 This whole chemo thing just seems so counter productive. But that is where the $$$ are, so that is what the doctors will keep doing.

I am afraid of what doctors are doing to my body.  I am also afraid of what cancer is doing to my body. I don't know which scares me worst. Either way, I don't think I will like what the future holds.

I need to work on pleasures that do not rely on the past, and don't depend on the future.

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.

Day 33 - Questions for the Doctor

Today was perfect weather. I did a long walk (for me) of 11.85 km. (About 7.5 miles)

While at the mall, I went to a big book store, and read the different books by people with cancer, and how they dealt with it. The books were very similar to each other, and to even my blog. The same thoughts.

I sat in the mall and listened to people talk.
Blah...blah...blah...I wonder what the oncologist will say tomorrow..blah..blah..blah..I wonder what the PET scan report said...blah ...blah...blah..I wonder if the op on my leg will allow me to get around by myself...blah ...blah...blah.
It is like I have only one thing on my mind. Cancer.

I used to think I would never live to be 40.. then 50....then 60. So why am I so surprised and shocked by this possible death by cancer?
The logic of death, says that everyone dies, so I will just be one of the previous 108 Billion people that have died. But some how, it has become personal, not logical. Personal.

My brother said I should live by the phrase, "Don't go there, till you get there."
In the future I may have things that are concerning, and worrying. To worry about them now, is just borrowing worry from the future. I am sure there will be enough time for worry, when it is time to worry.

I stopped half way back at a dance studio. Dance studios often have good cafes or coffee shops. I ate a scrambled egg with feta, and had a large coffee. 

Tomorrow at 10:00 I will meet the oncologist. Hopefully she will have the report by the radiologist of the PET scan.

Doctors are evasive in their replies.
Definition of Forthright - frank, direct, straightforward, honest, candid, open, sincere, outspoken, straight, blunt, plain-spoken, no-nonsense.
I don't believe I have ever met a "forthright" Doctor.

I have a list of things to ask her.
Assuming I am not killed by an accident, will I die from this cancer?  
Will this cancer be the cause of my death?
How often will we check the spread of cancer? 
Will the checking be by PET scan?
How deep are the sores on my leg? 
How will the surgery limit my walking? 
Is amputation an option? 
How deep can you cut and still allow me a return to a healthy leg?
Is the surgery worth it, if a major part of my lifespan, is the recovery time from this op?
Will chemo be able to "cure" this cancer? 
If not then why are we doing it? Shouldn't we go straight to Immunotherapy?

  I am worried because it is a big piece of me they want to remove. 28cm x 18 cm was the guess before the PET scan. I think that area is now larger, and much deeper. Well into the muscle if I look at the PET pics.

Immunotherapy seems more "pass or fail".  Chemo seems too much like just "fucking around" with cancer. A little poison here, a little poison there. Maybe we will slow it down, and you can survive a few years till the leukemia kills you.

I wish I knew more about this whole thing.

Day 32 - Finances

I have been thinking about finances today.

To see how wealthy I really am, I take my total wealth, and divide by the number of years I have to spend it.  If I have a million bucks, and think I will die in 20 years, then I can spend 50,000 a year. If I think I will die in 2 years, then I can spend 500,000 a year. Cancer makes me feel rich.

But cancer also, makes much of my wealth unavailable. I have property in the US. To sell that property would require a long period of time. So that property wealth does me no good in the short term.  Much of my wealth, has no value because I will not be able to convert it into something like a Ferrari.

My largest single asset is my house in Pretoria. That asset was going to be the last thing I would convert into cash. Probably when I am old, and needed frail care, or an assisted living retirement home. If I live another 20 years, then I want to keep the house as my last reserve. If I am going to live another 2 years, it is probably not worth my time selling it, before I die. With cancer, long term assets have less value, than short term assets.

So if my time left is short term, I am not as wealthy as I had hoped. Some of my assets are easy and quick to convert to cash. I also have the advantage of not caring about the tax man. What is the worst the tax man can do in 2 years? If the tax man has something worse than giving me cancer, then, I would be worried.

If I have 2 years to live, I would like to have maximum cash now. It is to bad that most of this planning relies on knowing when I will die. If I know that I am going to get hit by a bus this afternoon, then there is no way I can spend, or enjoy, even 1% of my wealth before I die.

I heard today that: "More people die with prostate cancer than from prostate cancer. "
I wonder if that is the same with other cancers. I think some cancers act too fast, to give other types of death a chance. It would be interesting to know what percentage of people die with cancer, versus die from cancer.
Maybe that is where the saying "I am not dying from cancer, I am living with cancer. " comes from.

Day 31 - No Thoughts

I slept poorly, and only fell asleep after taking a sleeping pill at around 01:30. I have been tired all day.
Today was rainy, cold, and windy.
So I just bundled up warm, and read all day.
No thoughts of the future, and no thoughts of cancer.

Day 30 - Learning about Chemo

I have been tired all day. Yesterday was a hard day.
I ate a real breakfast at a restaurant this morning. Not healthy for my body, but great for my soul.

I have been trying to learn more about different chemotherapy drugs, so I'll know more about what the Oncologist will prescribe. There are many different types of chemo, as well as different dosages. I need to read up more about the many types, such as:

Alkylating agents - These damage DNA to keep the cell from reproducing. They can cause long-term damage to the bone marrow. This can lead to leukemia.
 
Antimetabolites - These agents damage cells during the phase when the cell’s chromosomes are being copied.
 
Anti-tumor antibiotics -  Here the term Antibiotic is used in the general sense. It kills biotics like cancer.
 
Anthracyclines - anti-tumor antibiotics that interfere with enzymes involved in DNA replication.
 
Topoisomerase inhibitors - These drugs interfere with enzymes which help separate the strands of DNA.
 
Mitotic inhibitors - Plant alkaloids and other compounds derived from natural products. They damage cells by keeping enzymes from making proteins needed for cell reproduction
 
Corticosteroids - Corticosteroids, often simply called steroids, are useful in the treatment of many types of cancer, as well as other illnesses. 

Other things I have been reading about is the different goals of chemo. Different goals need different drugs.

Copied from here:
http://chemocare.com/chemotherapy/what-is-chemotherapy/chemotherapy-terms.aspx

Adjuvant chemotherapy - Chemotherapy given to destroy left-over (microscopic) cells that may be present after the known tumor is removed by surgery.  Adjuvant chemotherapy is given to prevent a possible cancer reoccurrence. 
Neoadjuvant chemotherapy - Chemotherapy given prior to the surgical procedure.  Neoadjuvant chemotherapy may be given to attempt to shrink the cancer so that the surgical procedure may not need to be as extensive.
Induction chemotherapy - Chemotherapy given to induce a remission.  This term is commonly used in the treatment of acute leukemias.
Consolidation chemotherapy - Chemotherapy given once a remission is achieved.  The goal of this therapy is to sustain a remission.  Consolidation chemotherapy may also be called intensification therapy.  This term is commonly used in the treatment of acute leukemias.
Maintenance chemotherapy - Chemotherapy given in lower doses to assist in prolonging a remission.  Maintenance chemotherapy is used only for certain types of cancer, most commonly acute lymphocytic leukemias and acute promyelocytic leukemias.
First line chemotherapy - Chemotherapy that has, through research studies and clinical trials, been determined to have the best probability of treating a given cancer.  This may also be called standard therapy.
Second line chemotherapy - Chemotherapy that is given if a disease has not responded or reoccurred after first line chemotherapy.  Second line chemotherapy has, through research studies and clinical trials, been determined to be effective in treating a given cancer that has not responded or reoccurred after standard chemotherapy.  In some cases, this may also be referred to as salvage therapy.
Palliative chemotherapy - Palliative is a type of chemotherapy that is given specifically to address symptom management without expecting to significantly reduce the cancer

Targeted therapy is like chemo that is more specific in attacking cancer cells only, and leaving other fast growing cells alone. Some fast growing cells are  hair, intestines, mucus membranes, and bone marrow. Targeting allows stronger doses, with less side effects.

I also need to read about Immunotherapy. That sounds like the one with the best prospects of a "cure".

 There is so much to learn, to be able to understand what is happening to me, and how to fight it best.

Day 29 - Day of PET scan

I was scheduled for a PET scan on Wednesday, but something broke and there was no FDG. They rescheduled me for Friday. Then yesterday late the PET scan lady called saying they might have a cancellation for today, Thursday, did I want to chance it. I said yes.
So I was up at 5 and drove to the hospital in moderate traffic, and arrived there around 07:00. I called the scan lady, and she said to be there by 9. I was already there. So I read a bit, and meditated a bit, and walked into the PET scan place around 8:30.

You have to walk through the X-ray department, then through the CAT scan department to get to the tucked away PET scan place. Very informal. I liked the ladies there. They would walk past and chat.

Because yesterday was a disaster for them, and they ended up with 7 people that didn't get scanned, they had a huge back log. Normally after you finish the scan, you wait around about 30 minutes, to see if it was a good scan. If it was not, then they quickly do another one. But with the big backlog the ladies were trying to move people quickly. After my  scan, before I even left the scan room, the next person was getting on the table.
 This way they can do many more people, but, if there is a bad scan, the radio active drug would be to weak before the machine was available again. That person would need to be re-booked another day.
 The ladies did well, and the complexities were dealt with in real time. Each persons cancer and weight have a different FDG, so it is custom made. Also the time to have it get absorbed, varies with the amount of muscle and fat in the body.  The guy right after me was fat, so he actually got the IV before me, but I got scanned before him. The ladies had a real juggling act going.

 After the scan is done, they allow you to eat, and drink coffee. I had brought with me, a banana and some plums...not nearly enough after 2 days of a zero carb diet. There was a lady and an old man waiting with me. It takes about one hour thirty for the radioactivity to get low enough to allow you to be near other people. So us radioactive people just sat, and chatted.
The lady was there because she had had uterus cancer, and then later bladder cancer. She had been in remission for 2 years, but it looked like it was back someplace else.
 The old man had a double mastectomy. Men also get breast cancer. His had spread into the lymph system, so he was getting heavy chemo. Today's PET was a check to see if the chemo was working. If not, then his oncologist will have to change something. All three of us felt that the doctors have more important things in life, than the patients, and we all thought the whole health system was overly complex.

A special radiologist will look at the scan pics, and write a report within 3 working days. I asked them please to rush mine as I have an Oncology appointment on Tuesday morning. (2 working days.) So hopefully I will get the results Tuesday morning at the oncologist.
Even my Oncologist says that the PET scan pictures are very deceiving, and there are many traps for false positives, and false negatives.


So once again I am in a waiting game. No more information till Tuesday morning....maybe.

Day 28 - Failed PET scan

What a disappointment. The FDG preparation for my Pet scan this morning failed. So they rescheduled me for Friday morning. :-(
I was up at 5:00 and made a fruit salad for lunch, and a thermos of coffee. Nothing by mouth, except water, for the last 7 hours. No carbs or sugars for 24 hours. I packed all my clothes I would need during and after the scan. I made sure the Beetle would start, and then they called saying that my FDG production had failed.

This cancer has a very powerful encouragement to learn about things I never even knew existed. FDG is one of them. You can call it 2-deoxy-2-(¹⁸F)fluoro-D-glucose, if you prefer.


From this article:
http://mg.co.za/article/2013-08-02-00-sa-corners-radioactive-market

--------
At the Pelindaba Nuclear facility, outside Pretoria, vast energies are pumped into a cyclotron — a machine that accelerates protons and neutrons, the building blocks of matter, and smashes them into a material. 

The machine creates beams of these particles that bombard a target substance, creating fluorine-18 [18F], which is mixed with fluorodeoxyglucose (FDG). It is quickly packaged and driven to the nearest hospital and injected into a waiting patient’s blood stream.

The clock is ticking. Its radioactive decay is measured by its half-life, which is the time it takes for half of the substance to decay. 18F-FDG has a half-life of 110 minutes and after that time it is not effective, which is what dictates the stringent deadlines to get it from the lab into the patient. From the minute the intimidatingly named 18F-FDG is created, doctors have less than two hours to administer the radioactive substance to their patient before it becomes ineffective. With it, the doctor will be able to map their patient’s cancer and be better equipped to treat it using a PET/CT scan.

18F-FDG is a substance that behaves like glucose when ingested into the body, but it cannot be metabolized. This means it will pass harmlessly through the system once it has done its work. Although most of it will be excreted after consumption, after 12 hours it will be in effect untraceable in your body.
-------

 It hurts my little brain to remember that an FDG PET/CT scan is really a "fludeoxyglucose positron emission tomography/computed tomography scan".

Day 27 - About the coming PET scan

I got up at 05:00 this morning. Trying to get in the mood for tomorrow's early PET scan. My PETscan os scheduled for 07:30.

Today I ate an egg with minced pilchards for breakfast. Egg and pilchards for lunch, and supper is steaming now. Broccoli and Haddock.
I did not go for a walk today. I have been following the pre-PET scan procedure exactly.
I called the Oncologist and got a booking to see her on Tuesday the 8th to review the results of the PET scan.

I went to the WCL (Wound Care Lady) today. She changed the dressing on the leg. It looks much better The sores are smaller and look like they are healing...But...The purple area that surrounds the sores is larger and darker. So the sores are healing, but the bad area is spreading. She said that she can see many new sores developing inside the bad area
The area in question is about 28 cm X 18 cm. (11in x 7 in) between my ankle and the knee on my left leg. The exact extent of the lymphatic cell that are cancerous can only be determined by a PET scan. Then the plan will most likely be, to remove the skin from that area.

If the cancer hasn't spread beyond that area, then removing that skin should slow down the spread to other areas of my body. But, maybe removing that skin will only be like closing the barn door after the horse has run away.

I am thinking about adding some solar panels to my roof solar system. But I need to see what the PET scan says before I want to commit money to that.

I never like being told what to do. Maybe that comes from being an aircraft Captain for 30 years. I hate alarm clocks for the same reason. I don't like some machine bossing me around. The worst is when I try to shut down my computer, and it tells me I need to do something else first. Who is in charge? I say stop, shut down, die, and then it argues with me. I just pull the plug.

This cancer thing makes me want to pull the plug on the world. I am SO not in charge. I can see why people commit suicide. It puts them in charge.

Well I now need to eat my fish and broccoli, and get out my clothes for tomorrow. They say wear comfortable clothes with no metal.
I will arrive around 06:30 at the Little Company of Mary Hospital. For one hour before the scan I am not supposed to read, or move lots, or even talk. They also say I must keep warm. The goo will be absorbed by any cell needing energy. So if I talk a lot, then my vocal chords will require energy, and so they will absorb the goo. Also my eye muscles will absorb if my eyes move a lot. If I get cold, then the fat will absorb the goo.

The goo they inject me with is made that morning at 03:00. Part is via a needle and bag, and part is drank. It takes about an hour for the goo to move around, and get absorbed my cancer cells. It is absorbed where normally sugar would be absorbed. Thats why the zero carb diet for 24 hours comes from.

Then the PET/CT scan starts. It will take about 25 minutes. I will be in like a big hot dog bun, and I will be the hot dog. They say it is not noisy like an MRI, but is silent. I must be very still and not move. I am worried about my back starting to cramp up.

After the scan, they want me to sit quietly till they check if the scan was a good one. If not we do it again. If it was a good scan and the pictures are good, then I will be allowed to eat and drink. They say to bring my own food, a thermos of coffee, and something to read.

Since the goo is very radioactive, I can not come into contact with any children or pregnant ladies for a few hours. They want me to stay with them for a few hours till I pee out all the radioactive goo.

They will then get a radiologist to interpret the scan. They say it takes 3 working days. So I scan on Wednesday, and three working days is Monday, when the Oncologist will recieve the report, then on Tuesday at 09:30 I have an appointment with the Oncologist to get the verdict.

I feel that finally something is happening.