I Have Cancer - colon cancer

Linear and Lateral Thinkers

Aug 312010

I am a lateral thinker. Drives most people crazy. You see relationships where none appear to exist. Fo’ad and I were talking about this the other day. Most researchers appear to be linear thinkers. They are on a single minded mission. Some research appear to have an intrinsic value and we look forward to positive results. Other research appears more esoteric, and seem to have little value.

Little value, that is, until someone else comes along and sees something in the research that warrants a further look. The research is taken to another level, until someone, somewhere, brings the research to a useful end.

There are more of these examples that we know about. PostIt notes are, supposedly the result of researching the solution to one problem and coming up with the notes that we all know and love today. A number of items we take for granted in the computer industry were invented and shelved. The inventors found little value in the objects. The mouse, Ethernet connectivity that the web runs on, the Graphical User Interface (GUI) used in all major operating systems, were invented at the Palo Alto Research Center (PARC) owned and operated by Xerox. The brilliant scientists and thinkers employed at PARC kept inventing, but no one commercialized their products.

It tool someone like Steve Jobs who borrowed their inventions, most notably the mouse and GUI to create the MAC. A bit of, are you using this? Do you mind if I take it? No please, go right ahead. It tool IBM to capitalize on the computer by taking it one step further. They commissioned their engineers to come up with a personal computer using off the shelf components. No new inventions. As expensive as they original PCs were, this kept the price down.

I was the Marketing manager at a hardware and software distributor called Ingram Micro. We are going back many years here, pre Web. We had a meeting with Seiko, a company that is much larger than meets the eye. After all was said and done, one of the engineers showed us a touch screen that would run on a MAC. You might take touch screens as a given, specially with the popularity of the iPhone. You have also all seen them used in restaurants and others locations. Touch screens were a rarity in those days. Their performance was spotty and people were just beginning to let their imaginations wander to see what they could do with these. We all looked at the yellow screen and thought it was cool and wonderful. It worked quite well. None of us could imagine what it could be used for. Nor could the engineers at Seiko. We have not heard of the product since.

You are all familiar, by now, with Bluetooth, the technology that allows you to connect your smart phone to the ear piece. Bluetooth was originally created to offer a secure wireless connection between two devices in close proximity to one another, no more than 7ft, about 2m. The technology now boasts a range of over 300ft, 100m. The rules for technologies such as Bluetooth are set by a consortium. These rules are updated on a regular basis. The Bluetooth consortium was revising their rules to upgrade the technology. They were approached by a manufacturer of chemicals who suggested that one of the proposals who get in the way of a device being used by the chemical company.

This came as a surprise to all in the room. What would a manufacturer of chemicals have to do with Bluetooth? This was a technology developed for computers. It turns out that the chemical company had developed these very small balls that contained a thermometer and a Bluetooth transmitter. They would drop these in the vats of chemicals and could tell what the core temperature of the vats were. Essential information when creating these mixes. Linear thinkers meet lateral thinkers.

I would theorize that linear thinkers are mostly doers, while lateral thinkers are, well mostly thinkers connecting disparate dots. There are always crossovers. People who have a leg in each camp.

One always starts wondering at some point how these stories will relate to what I am going through. Here goes.

I am now taking part in a clinical trial run by Dr Robert Buckman. This is being done with the blessing of Dr Hedley. I am the only colon cancer patient in the group. Everyone wants to know the names of the drugs i am taking. I showed the list to someone recently. They were surprised that none of the drugs are new. Dr Buckman has taken existing drugs and decided on an alternate use for them, changing doses and treatments. Meet Dr Buckman,the lateral thinker.

The success or failure of the idea is rarely the issue. Success of a medical clinical trial is obviously a desirable outcome. Time will tell on this one.

New treatments

DalCM-P, cancer, chemo, doctor visits, fatigue, support, vacation 6 Responses »

Aug 082010

Cancer creates such wonderful opportunities. Bi-weekly visits to the Chemo Daycare, the side effects of all the treatments, the incredible amount of information you have to sift through to get the an inkling of what to expect.

The other side is the amazing support of friends and relatives. The good side.

We spent last weekend visiting friends and taking full advantage of their hospitality. Saturday was spent on the shores of Lake Simcoe. Janet’s cousin Deena, rents a cottage on Lake Simcoe every year. We spend a day visiting. Her brother Bryan and family come up as well, as does Eva. All good making for a small family get together. I had a good chat with David Margolese whose company I always enjoy.

We spent Sunday and Monday at the Fraser farm taking full advantage of the company and space. The Frasers were all there, including the delectable and always charming Ceilidh.

Heather Fraser is doing some very interesting work in all kinds of places. We talked (again) about the work of one of her friends. A Dr. Robert Buckman. He, the Doctor, theorizes that we are better off treating cancer by slow doses of Chemo instead of the current methods of bombarding the body with a huge dose of the drugs. The theory is that the cancer cells start dying when bombarded, but soon retreat, in effect removing the threat. The magic happens once we stop treating the body to the cancer drugs. At this point the cancer cells return in full force attacking the body with renewed viguour.

The slow treatment allows the body to be treated with low doses of the Chemo drugs, in effect fooling the cancer cells into thinking nothing is happening, that they are not under attack. This treatment lulls the cancer cells allowing for a more prolonged attack. The current trials have been done on breast cancer patients. The treatments are called DalCM-P. Goolge it, or read this article. I have an appointment with Dr. Buckman this coming Thursday.

I have started my Chemo vacation in a very slow mode. I have been away from my computer for a few days, which is very unusual for me. I have a lot of projects on the go, but find myself in some sort of a limbo state. Still trying to come to terms with all the unsaid words about why we are on vacation. I am eternally positive in my outlook, yet cannot help but wonder about the future.

People insist on telling me that they could die early when they get hit by a bus. I finally found a link that talks about the possibilities of ending your life with said method. As my friend Stone remarked, it is not a competition. If people insist on getting hit by a bus, they are more than welcome to go before me.

I am also receiving information about alternative treatments. More specifically, two people have written me with information on Y-90, an isotope based treatment directed at liver cancer. It is also used for treating metastasized cancer that are now affecting the liver. Items for discussion with Dr. Buckman.

I have not been interested with the type of cancer that is afflicting me until now. The rare occasion when the question has come up has resulted in me answering with something to the effect that I have the type of cancer that eventually kills you. A lot of the remedies I am reading on the web refer to very specific types of cancer that are affected by the treatments. It might be beneficial for me to know what type of cancer I do have to make sense of the articles I am reading.

The amount of information is mind blowing and very confusing. Following the idea that each body is different and reacts differently to everything adds to the confusion. There are cases of people who have been removed from treatments that have survived. People given 6 months who have lived for a lot longer. The comments of people who have tried certain remedies and are waxing poetic about it can also be misleading. Are they genuine? What was their affliction? None of it is corroborated with statements from reputable hospitals or clinics or doctors. We will believe anything that we think will cure us, however absurd it may sound.

How to differentiate between the absurd and the items that make more sense. Does the guy who claims that eating hot peppers on bread with garlic for two weeks make sense? A pepper based diet will rid you of cancer in two weeks he says. That diet will also be rid of me in less time. He just might be right though. Do I throw caution to the wind and attempt his remedy? The temptation is there, going against all common sense.

The next few weeks will see me working on a few projects. I will attempt to make my camera bag. Finish at least one of the two web sites I am working on. Maybe render my new kitchen to paper, as well as the new design for the back yard. All these things take time and concentration. I ams till sleeping in the afternoons. For longer periods than before the vacation. These get in the way of the projects. Do as the body tells.

Time to see the psychologist.

Thank you for listening. Thank you for your thoughts, support, and prayers.

Vacation - Good news or bad?

cancer, chemo, doctor visits, life, positive thinking, vacation 4 Responses »

Jul 272010

The level of confusion, for want of a better word is amazing. On the one hand, it is good news. Let the chemicals run through their routine and exit the system.

Take a couple of months off to reassess the situation.

Ponder the meaning of life.

Start working on all my projects.

Keep away from the routine of the hospital.

Janet was talking the other day about this situation. You start on this adventure in a bit of a daze. You ask a bunch of questions. According to Janet I was asking my fair share of questions. Except that I was repeating my questions. I was getting answers and repeating the same questions. As I said, in a bit of a daze.

You acquiesce to the advice given by the doctors. Specially if you like them. They seem to know what they are doing. Dr. Heldey has a huge collection of articles to his credit. Surely, he knows a lot of stuff about colon cancer and its metastasized state. He is very reassuring. All we can do is follow his advice.

There is a lot of talk of alternatives to the traditional medicines. There are no proofs, just a lot of information. It is very hard to sift through all the information. We have discovered that you tend to make sense of the information as time goes by, as the need arises to make sense of things. So much of the information is anecdotal. We have no idea if people are responding to the medication, the alternative choices, or not.

I have always maintained that I will not live just for the sake of living. I will not go through a regime that seems to be more work than it is worth. What price is life worth living for? All this work and you live an extra two years. Is it worth it? Probably to the people around you, but not for the person going through the chronic condition. At least not to this one. I keep reading about people going through all sorts of programs to live longer. Why the compulsion to live at any cost?

The health network has looked after me for the past year. Diagnosis, operation, Chemo. Everyone looking after the chronic. With a smile, a laugh and a hug. You, the chronic are being looked after by all these people. The chronic is not doing anything, while things are done to him. We are a bit powerless. Go to the hospital, give blood, get Chemo. Make sure you have taken your drugs before the Chemo. Go home, sleep, rest, make the best of the situation.

We have to move now from having things done to us to deciding what we need to do for ourselves. We have to follow through with some of the stuff we have been reading about. Make sense of all the messages we are getting. Again, sift through everything and make decisions.

I find the situation very confusing. Again not sure if that is the right word. I have a lot of projects to work through, a lot of time to figure things out.

Getting a Second Opinion

cancer, doctor visits, second opinions No Responses »

Jul 152010

What is it about second opinions that reassures people? I can see circumstances where you may want reassurance for something traumatic. In most cases, I doubt a secon opinion is very helpful.

I am not talking about construction projects, or the installation of a furnace. We moved into our house 11 years ago. Our furnace seemed to have trouble keeping the house warm. The air conditioner that was highly praised by the previous owner was barely useful. Nothing more than an air circulator. I talked with the representatives of about 6 different furnace manufacturers. Like most industries. there are very few actual manufacturers. What looks like a diverse field is dominated by a few companies that market several brands. All claimed to have the best unit on the market and cited one item that distinguished them from the others.

One had an electronic ignition which they claimed was useful in that it was more efficient. Do not need a pilot light. Just saved myself $10 a year. Another had an anti-static drum that would prevent the accumulation of dust on the air intakes. Fantastic feature guaranteed to work for three years at least. Another had a 12volt fan which could stay on for ever circulating the air around the house. Highly useful. I guess. I came away from the exercise more confused than when I went in.

We finally replaced our furnace about three years ago. We hired the same contractor this year to install our central air without going fro a second opinion. We trust the contractor. He did a stellar job the first time, and again now.

One of my cousins visited me recently. One of the first things she asked is whether I was having liver surgery. No, I said, no such plans. She suggested I might want to go to Germany for said operation. It would only cost about $2,000. I should not rely on the opinion of my one doctor here. She understands that we are living with the constraints of universal health care. They often will not perform operations or provide other services to save money. I should not let that hold me back. Germany has wonderful services.

I accused her of having Health Care prejudices. This opened a whole other set of issues which I will not go into, a waste of time.

This advice was given without having any idea about how our system works, or at least the system in this hospital. There is a panel of doctors who look after us. Major decisions are made by the panel, not the individual doctor. This is a truly amazing system. Not only do you get a second opinion, but you get five of them. By the time I was set for surgery, I had four separate opinions. Why go after another?

The situation gets more complicated. We do not appear to understand the why’s and wherefores of cancer. We do know that I do not have liver cancer, but colon cancer in the liver. Same situation in the lungs. I finally understand the meaning of metastasized cancer.

An operation of the liver is a waste of time. The cancer cells are busy in both halves of the liver. Taking one half out, letting the liver regenerate, means that the cancer will just travel from the other half back to the first.

Why in the world would I want to second guess my doctor anyways? What makes me think for a second that I know better than my doctor. Should I go to Germany for the operation, who will look after me post operation? I have an appointment to see my surgeon tomorrow morning. This is 9 months after the operation. We talk and make sure all is right. It is not a long meeting. Am I supposed to after another local surgeon look after my needs following an operation in another country? Does not make sense to me on any level.

We were told that we have the right to a second opinion at any time prior to the operation. We were told to feel free to go to the Mayo Clinic or anywhere else we thought might provide some additional information or help. No one here would hold that against us. After being in this system for a year, researching, reading and contemplating alternatives, I can say that the doctors appreciate it when you know more, when you take the time to educate yourself and take charge of your destiny. At least my doctors do.

I think a second opinion is required because we do not like or trust the first opinion. We are hoping that the bad news is not as bad as it appears to be and want to hear a second voice.

I generally deal with people I trust. I trust my family doctor. We have been together for fifteen years and understand each other. She is a modern medicine woman, dispensing drugs to heal all. Anyone not comfortable with that should seek the advice of a traditional medicine person.

I trust my oncologist and his entourage. I trust my surgeon and her entourage. I am happy with the decisions taken. I will add resources as I see fit, as I can accept them, understand their significance.

The Week That Was - Ended Nov 29

Uncategorized 3 Responses »

Dec 012009

Monday, Nov 23

Had an appointment to see the surgeon, Dr. Erin Kennedy. She was ecstatic. Have never seen her so amazingly cheerful. You look great she says. Have you seen your CT Scan report? Yes, we say, met with Dr. Hedley. Don’t pay any attention to it, she says. The increased size of the tumours is minor and to be expected. Ignore it and move on. She was positively bubbly over this.

We told her about the blood results that I posted earlier. Oh my God! The news gets better and better. She looked at my scar, which I must say looks remarkably good to me, and was even more excited. I have my hair, my scar is beautiful, my blood results positive. All is good with the world. She gets extra points.

Discussed the longer lasting effects of the last chemo. She is not surprised and mentions casually that the F5 chemo drug is cumulative. We should expect the effects to last longer. Great.

Next appointment on January. We will be seeing her for a long time.

Tuesday, Nov 24

Nothing really remarkable happened. I am tired, more so than usual. Slowly getting psyched up for the chemo on Thursday. Hopping that this week, the effects will not be so long lasting, in spite of what Dr. Kennedy says.

Wednesday, Nov 25

You have read all about that fateful day in my Art Therapy page. Devin picks me up from the Art Therapy session and we sometimes go out for lunch or something. I am too tired to go anywhere. We come home. I eventually do what I do every day, take a nap in the afternoon. Devin has to go to work. He plays the piano, plays on the computer, and finally goes. I spend the rest of the day reading articles, and doing my Word Searches.

Thursday, Nov 26

Drive Janet to work and myself to the hospital for blood work. Chemo is at 1:30. Doing my blood work at 9:00 means they will get it on time for the chemo session.

Drive over to Paulee’s house to pick up her dead computer to take to Steve’s. Her hard drive has crashed. It is fatal.

Go to the pharmacy to pick up my drugs. They do not have a renewable prescription. Call the Doctor and leave a message with the wonderful Susan, his assistant. She faxes the renewal over to the pharmacist, the equally wonderful Farrah who fills it right away. I go to Dash kitchens to grab a bite to eat while all this is going on. I am beginning to shake a bit from lack of food.

I call the Chemo Daycare unit before taking my drugs to see if chemo is a go or not. The nurse gives me a bit of a hard time until she recognises my name. Everything changes, and she is sweet as pie. No chemo this week. My white blood cell count has gone from 6.7 to 0.8 in one week. Too low for chemo.

I am very disappointed. You psyche yourself up for the drugs only to have them canceled. I have to go in to the daycare to have the pin removed from the Porta-Cath. The nurses are as cheerful as always.

On my way out, I run into an East European couple we met on our very first chemo session. She also has colon cancer and the requisite bag. She was waiting for her blood results. Her chemo was postponed the week before because of a low white cell count. I sat and talked with her for a while. She does not appear to have anyone to talk to about her cancer. We talked about the headaches that we get that feel like migraines. Tylenol has no effect on them. Only sleep seems to cure them. We talked about our continual exhaustion. She did not know that she could get her blood work done earlier in the morning, so she does not have to wait in chemo daycare for the results. She sounded tired. I hope I run into her again. Her husband is always with her.

Friday, Nov 27

This is my date day with Devin. He asked me what I wanted to do. I slept, virtually the whole day. I was exhausted. Not sure if it was the let down of not getting chemo or what. He went out to his club and ran a couple of errands. I stayed home. It was a truly bad day for me.

The only thing that happened to cheer me up was hearing from one of the participants of the Art Therapy session. We are now exchanging regular eMails. This is fantastic.

Nothing more to say about Friday.

Saturday, Nov 28

Miraculous recovery. Janet forced me out of bed. She did not have to try very hard. We decided that I have to force myself to get out of bed and do things. We went to the market and bought some food. It was great to see some of the merchants who know me. Big air hugs all around. Murray and his son Allen are particularly attached.

Came home and took a nap.

Went out later in the afternoon with Judy and Arlin to the Mercer Gallery to see an exhibit on advertising in magazines of the 60′s, 70′s and 80′s. It was very cool. Had coffee after and came home totally exhausted, but in a very positive way.

I cooked supper. Spaghetti with my patented tomato sauce. Delicious. Sorry for not inviting any of you. Maybe next time.

Sunday, Nov 29

Fetneh came for a visit. Always a welcome sight. We had a great time. And yes, I had to take a nap in the afternoon. I was exhausted by the time she left. I think I may have a recurring theme in my life. But again, a good and healthy feeling. We talked about all kinds of things.

Carys, my four year old niece was dropped off to spend the day with us. Paulee was going to a healthy living show. Carys is very shy and it her virtually the whole day to warm up to Fetneh. It was a delightful day. I played with Carys for a while, but could not keep up with her. Damn.

Janet spent a major part of the day with her Dad. Good thing. Glad Fetneh was here to keep me company.

All-in-all the weekend ended on a high note.

Art Therapy

Uncategorized 5 Responses »

Nov 052009

The good people at Wellspring allowed me to join the Art Therapy session that takes place on Wednesdays between the hours of 10 and 12. Devin and I drove Janet to work in the morning. We got to Wellspring about 30 minutes too early. We had a coffee and read the paper. Art Therapy. I [...]

About

My name is Farokh Monajem. I ran into some digestive problems in the middle of June 2009. Janet (my wife) was out of town on business, which was not a big deal at the time. Unfortunately, things have gone from bad to worse. This diary is an attempt to make sense of it all. I [...]