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.

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.

We are slowly realizing that a lot of decisions are ours to make. If we want to quit the Chemo Session, than quit it is. We are in charge of our treatments. The doctors are there to guide and advise us. The ultimate decision is ours. This is a bit freaky. We are never sure if we are making the right decisions or not. Do we have the right amount of information to make a decision? Is it the right decision? To make matters worse, the doctors themselves are not sure either.

Every body reacts differently to the drugs. We were at a small party celebrating Kali’s birthday the other day. One of the friends has a brother with very advanced lung cancer. The gave him one Chemo session to which he reacted very badly. All the stuff they keep expecting me to go through. So sorry to disappoint. They removed his brother from any further Chemo treatments. So are you still on Chemo, he asks me. Yes. How long have you been on Chemo. Almost a year now, since last October. He was dumbfounded. I do not look or behave like a Chemo patient. Except for the afternoon naps. We are all different.

My blood work showed more positive results than last time. My liver enzymes are closer to where they should be with one indicative being totally in the normal range.

Dr. Hedley brought up the fact that we have not had a break since this thing started. I started feeling the pains in June 2009. By August 1, the diagnosis was fairly complete and certain. Operation on September 2, Chemo in October. Yikes. A year without a break. The doctor saw no reason why we should not stop the treatments right now and take our vacation. A CT-Scan was planned for Friday (today) to set a baseline for the future. Next CT-Scan in two months. Chemo would only start again if my situation deteriorates. A steady condition will result in a longer vacation.

A two month Chemo Vacation is on the books. Cannot believe it. I am in a bit of a daze. Basically what happens when you receive bad news or terrifically good news. You cannot believe your ears and shut down. Two months with no Chemo.

Janet and I stared at each other. What do you say? How do you react?

Doctor Hedley wanted to feel my stomach to make sure all was right. I suggested that things were still a bit tender. I can lift heavier bags now, but feel some discomfort if I overdo things. I am sure the healing process will speed up without the Chemo getting in the way. He appeared to confirm this. Good news. I am looking into going to the pool on a regular basis to strengthen the stomach a bit. I get bored swimming. Back and forth, you go. I will have to do it nevertheless.

Can we start eating raw meats again? I miss my steak tartar, sushi, and oysters. I was given the green light for sushi. Say it ain’t so. We decided on the spot that we would have that for dinner to celebrate. Diana, Nancy and her daughter Lily are coming over. Makes for a grand celebration.

Dr Hedley mentioned that we are in really good hands with his nurse, Shahnaz. We truly are. She is magnificent. She mentioned how much the nurses in the Chemo daycare like me. I walk in with my big laugh and cheer them up. The doctor just shook his head. All the nurses love him he says. Then gives me a gigantic hug before leaving.

Janet and I were left alone for a few minutes in the consulting room. She high fived me. This is the first time in almost a year were I could a glimmer of hope in her eyes. She seemed ecstatic over the news. She had a bright smile and a glitter to her eyes. That was enough to make me happy.

I phoned Fetneh and Fo’ad that night. It is always good to talk to them after news like this. It helps air my thoughts, clear the cobwebs a bit, get some perspective. I eMailed them of course, but that was not clear enough for them. Fetneh was jumping for joy. She made me promise to not withdraw from life because of this. The are chances of withdrawal symptoms creeping in if you are not careful. The hospital has been a home away from home, as it were. A very safe place to spend time in. You get sort of attached to these things. The routine. However horrible the Chemo experience is, you get used to the routine. The people. The support.

I assure her that I will not regress. I will keep the blog going. I may have a bit of trouble adjusting to the new freedom. We will see.

Fo’ad was just as supportive, of course. How does this change life? I don’t know. My curly head of hair may even make a comeback. I see no negatives in any of this. I become so much stronger when I am off Chemo for even a week. This can only be good.

We have lots of plans. We have been invited to all sorts of places. Long trips are out of the question. One day excursions within the vicinity of Toronto can be done. We are going to see Anne and Frank in Pickering, John and Sharon have invited us to their horse farm, Heather and Neil want us to go their farm. Heather reminded me that it is almost a year to the day when we went to their farm to share the news. Their friend Beth was there, also a cancer patient. She had a long conversation with me about what to expect. Strange to think of that now.

Devin is leaving us to go pursue a master degree in Change Management at the New School in New York City. We should be flying down on August 21. Sadness and happiness combined. I am ever so proud of him.

September will see me visit Montreal again to spend some time with Hong Lan. Janet will be attending the film festival in Toronto. My visit to Montreal will take some pressure off her. I have to talk to Hong Lan a bit more about what her remedies are. Stuff that includes acupuncture to increase energy levels. She deluged with so much information that I had trouble absorbing it all. A revisit is a must. To say nothing of spending time with Fetneh, of course. I will try and stay in the same apartment as before, taking advantage of Steve Mykolyn’s generosity. It is good to have a space of your own, specially when you are in my condition.

I lay down when we got home. All this stuff is a bit overwhelming. We had dinner and I returned to bed and made my phone calls.

Yesterday was my very first day of this vacation. I slept for a couple of hours in the afternoon. I also wandered around the house a bit lost. I have so many things to do, so many projects on the go. Where to start? Sleep of course. I am having lunch with Kali today. Looking forward to that. Planning the trip to New York when I get home from that.

Tomorrow is a new day. Taking us back to another sense of normalcy. Can’t wait.

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 process is very normal and pain free by now. Even the side effects are taken in stride. Took a look at the blood results. My white blood cell count is down to 2.3 which is OK for Chemo. The cutoff occurs when the count goes below 1.5. My liver enzymes are not doing anything special. Some are up, others down. These are used as a guide more than anything else. Numbers going down would indicate stabilization, up would be a bit of a disaster. This has me a bit concerned. It is not a good sign and I am getting apprehensive about visiting the oncologist the next day. I will have the Neulasta shot on Thursday once disconnected from the baby bottle.

We went to see the oncologist on Wednesday, June 16th. It was a very short visit. Not much to say really. I am not showing any of the side effects they are looking for. No throwing up, lack of appetite, weight loss, upset anything. Just fatigue, discoloured skin, and cracking nails. Normal. I have stopped reacting to the treatments. The body has adjusted to all the drugs. This is as good as it gets. We are now in control mode. Five more sessions of Chemo, then maybe a rest for three months before moving on to the new cocktail.

We are planning to go to Montreal for the July long weekend. My brother Fo’ad will be joining us, some sort of small family get together. We did this about three years ago. We rent a restaurant called Quartier Perse for an afternoon. The owner, Mahin, loves us. Her food is amazing. Highly recommended. Tell her I sent you. We rent her place for an afternoon and invite all our friends to join us. Everyone gets to see everyone with very little fuss. No dishes to wash, house to clean, people to serve. I am looking forward to it.

We asked for another week off Chemo in order to enjoy Montreal with full strength of mind and body. Keep in mind that at the beginning of this adventure, a week off was not even a consideration. No fuss now. Too many chemicals in the body. Live your life. Go and enjoy.

Janet and I went home in a bit of a stupor. Not sure how to react to any of this. What do you mean this is as good as it gets, and live your life? My numbered days just appear to have become a lot smaller. The amazing Doctor Hedley does not give out numbers. So useless and build false expectations, or negativity depending on the numbers issued. Nor do we talk about Stage of Cancer. You are alive between stages 1 through 4, dead when you reach stage 5. Again, these are so arbitrary. They amount to nothing except making you fell either defeated or buoyant. Both false feelings.

The hidden message is unmistakable. I woke up from my stupor through the next couple of days. Spoke with Fetneh and Fo’ad. Kali and I had lunch and touched on the subject ever so briefly. No need to ruin a good lunch. Enjoy your life. Diana, Nancy, Judith all had words of comfort. None of us either know what any of this means, or are willing to broach the subject just yet.

I keep saying this, and I will say it again. I am feeling far too well for things to go awry now. I am strong and vital and am living a full life. I am in the process of designing a couple of web sites for a couple of friends. Both are computer businesses, but very different from one another. I am quite excited by the projects. I am living my life, and am not prepared for any interruptions.

We hired a gardener to look after our downtown hacienda. I no longer have the energy for it. He is very good and has made the garden look amazing. Very organized. Not my style. I like things to be more organic. Most people hate that. This is a good change, specially if we decide to sell the house at some point. I love to sit in either the back or front yards and just look at the garden, enjoy the trees and brush, and the very few flowers that manage to grow. We have far too many very mature trees in the backyard. The shady garden overshadows everything. Moss instead of grass. A pond in the back that gurgles in such a satisfying way. Calm and serene.

Janet and I sit on the front porch once in a while. Drink coffee and watch the passers by. Some one will occasionally look up and nod or murmur a very quiet and subdues “hi” as they walk by. No one feels comfortable opening the conversation, invading your space. I guess it does not help that we have a fence around our property, the better to protect the cats in a dog endowed neighbourhood. The dogs insist on chasing the cats who find refuge behind the iron fence. It is not a high fence allowing for easy conversation over it, but people are shy.

We have noticed that the bigger the house, the more likely people are to stay inside and not venture into the outdoors. A couple of our neighbours know about what is going on. Most just say hi and walk by. We had dinner last night at Marianne’s. She lives two doors to the east of us. John Brown who lives three doors to the west also joined us. I made rice. Marianne made steak. A glorious combination. I had a wonderful time. They are very supportive people full of love and comfort.

We are spending today at Philip’s, Janet’s brother, celebrating Fathers day. Devin is trying to take the day off, though I have no idea if he was successful. Philip has a swimming pool in his backyard. I might just go in for a swim and see how it goes. I have to cover my bag with one of those pregnancy skirts. All I need is for the bag to come off while in the pool. Yikes.

Live your life. New motto. Stay positive. Not that we weren’t. Just seems that a new sense of urgency is suddenly overshadowing everything else.

Janet and I will spend just a bit more time together, specially in the summer when there is so much to do and enjoy in this city.

Live your life. Good motto for all, methinks.

Thanks for listening.

We received an eMail from  our Oncologist”s assistant, Shahnaz, that we should come in ad see Dr. Hedley on Wednesday, the day before our chemo. He needs to see the blood results and discuss us taking Neulasta, a drug designed to boost the white blood cell count. It appears to be standard release in the breast cancer clinics. That is as long as you can afford the $2,800 per month price tag. This drug is not covered by our delightful universal health care system. The cost is covered by Janet’s rivate health care plan courtesy of Ogilvy & Mather.

I did the required blood work on Wednesday morning. Went to the Art Therapy session, home for a bite, the to see the ever delightful Dr. Hedley. Have I mentioned how incredibly kind and gentle this man is? Well, that has not changed from our last visit. We discussed the benefits of Neulasta, and the inevitable side effects. My chemo starts on Thursday, I get disconnected from the baby bottle on Saturday. Neulasta is set for Monday. Would I care to self-administer? Think not! I will let Shahnaz do the honours.

The CEA blood results were positive in that the numbers are declining. Dr. Hedley did not make a fuss about them. I think we need a couple more counts to determine the trend. Two counts create an indicator. Four will start creating a trend of sorts.

My white blood cell count is low. We went from 0.8, to 3.9, back to 0.8, up to 6.7, down to 0.8. The last count from Wednesday morning showed a dramatic nothingness. Up to 0.9. Neulasta it is then. The good doctor says we cannot afford to iss these weeks.

I cannot pretend I understand what these number represent. All I know is that my chart has little asterisks whenever a number is too high or too low. I cannot understand why a number would  drop from 6.7 to 0.8 in one week. and no one appears to have an explanation. There appears o be lot of, this is just the way it is. I am as accepting as the next guy, but it would be nice to know.

I have been told to rest a lot. But that has not helped. I wrote an entry a while ago about the voice as a barometer. That has not changed My voice fluctuates with the state of my health. It is almost a whisper at the moment and has been for over a week. It made a comeback after the visit with Dr. Hedley which shows that the voice is affected by physical and psychological impulses. It went back to a whisper on Thursday in honour of chemo day.

Chemo Day

I was delighted that my appointment was for 8:30 in the morning. A couple of hours on the chair, home, hopefully before noon, great way to start the day. Better home around noon that at 7PM.

What a disaster. we got there at 8:30 and had to wait for them to get in touch with Dr. Hedley to make sure we could go ahead with he treatments. His office had not updated the files. They are all so over worked, it is not funny. We had waited an hour when Janet went to investigate. She located Shahnaz who works in the breast clinic on Thursdays. The clinic is located right next door to the Chemo Daycare. This was a no brainer. Shahnaz call it in.

My drugs had not been prepared, since they were not expecting me to get treated. We waited another half hour and I went in to investigate. They explained that they are waiting for the pharmacy but do not have a set time. I was pretty wasted by 10:30 and went to investigate again. The people at the front desk gave me a very hard time. Interrupting me. asking me why I was asking so often. They decided to have the nurses all me in to get rid of me. I refused to go and sit in the chair inside. What is the difference between waiting outside or inside if they do not know how long the wait is?

They gave me a pager and Janet and I decided to get get a bite. I had a chicken salad sandwich on brown with all the trimmings. That and a bottle of water, and I was back in shape. The pager went off almost as soon as I had finished my scrumptious meal.

We wnet in as instructed and made our way to our station. A very young nurse, as it turn out 23 years old would look after us. She said later that she thought I would be trouble. The best thing that happened is that one of the nurses with whom I get along particularly well came by and we joked around for a while. That helped ease any notions that I would be trouble.

This is a great department. Once you go through the doors to the clinic itself. The staff at the front desk have issues. They are in the wrong job. We appear to be in their way, and they are rarely prepared to help out.

We were finally out of there by 1:30. Ridiculous I say. Had a bite to eat, and straight to bed for a couple of hours of sleep.

The nurses in the Daycare do a lot of cross checking before giving you drugs. They check your tag, cross referencing your hospital number, last and first names, and finally ask your date of birth. The do this every time they connect you to a drug. They had misplaced my 5FU drug. This is the one in the baby bottle that I get to take home with me. They found it, but all the cross referencing prevents them from giving it to the wrong person.

Not much more to say about this. Looking forward to the Neulasta. Could use the energy boost.

Thank you for reading.

My brother and his wife left on Monday morning. My sister had come for the day on Sunday and left that same evening. I felt like I was on a natural high on Sunday. We even joked and laughed about my cancer. That was a a first and a very good sign. That people felt comfortable enough to laugh at this thing is way cool.

The last visit from my brother was followed by a huge emotional vacuum. This time was no different.  The high is followed by a very natural low. That was yesterday. The weakness of my voice is a dead giveaway.

Fo’ad drove me to the hospital for my CT-Scan. This is the first one since  the chemo treatments have started. The results should be telling. I am seeing the oncologist on Wednesday, so the wait is short for the results.

I had a pain in my ribcage last night right about where the liver is located. It went away by the morning and came back tonight with what appears to be a vengeance. I took a couple of Tylenol 1s. We will see if it helps. These things take about an hour to kick in.

My nurse Barb came for a visit this morning to see how I am doing. She will visit me every two weeks just to keep tabs on me. It was really nice seeing her. I somehow miss my nurses. You cannot help but want to get rid of them when they visit. Once they are gone, the story changes somewhat. It turns out the visits were nice and reassuring. Someone who looks at you and tells you how well you are doing and actually knows.

This has not been a good week so far. I went to see my supplier of bags and such, Faye. She is very sweet. We are looking at alternative brands. One of them has a locking bag. Makes sense considering my accident of the other night. We ordered samples. I went shopping for food after. Took some pictures.

Came home exhausted. It was not supposed to be this way. This is usually the first day of recovery where I show signs of strength, vim and vigor. Yet here I am totally exhausted and going to bed after I post this item. Not fair.

Tomorrow is a big day. I get to paint my picture of anger at the Art Therapy session. I already know what I am going to do. A no brainer when you have time to think. Just hope I can do my idea justice. You will see the results in the next couple of days.

And of course the oncologist.

Big day tomorrow