Andrew and I were talking about the new normal which I have mentioned in the past. The concept of moving upper and lower bars of moderation came up in the same breath. Ah yes, he says, moving the calculus zero. Yeah, right. Think about it. Stop thinking as soon as your eyes glaze over.

I have mentioned many times that I look forward to being visited by everyone. It is one of the few pleasures left. All we have after all is said and done is the pleasure of each others company. I still hear that people are reticent to come forward. They are afraid of invading my privacy, of inconveniencing me. At the root of it all, I am guessing, is that people are unsure of what will happen if they do visit. What to say? How to behave? What is appropriate?

I wrote Andrew to tell him to get his scrawny ass over here. I wrote Richard to let him know that he has not seen me in too long while. He is also in possession of Season 5 and 6 of my Buffy CDs and I want them back. I can get away with this kind of talk with them. These are long standing friendships. No surprise when both came through.

To the rest of you I say this. Write or call the morning you want to visit to make sure I am up to it. I am not shy (have I ever been?) to let you know if it is not a good day. Things change sometimes between the phone call and the drop in. Kali was here the other day. She called ahead, is it OK? Yep, I says, come on over. I was asleep by the time she got here. Things were not so good. Could not open my eyes. I would hear snippets of conversation when I mustered up the strength to wake up a bit. And that is also fine. I lost my strength. Normal these days.

The conversation gets easier with more visits. I look great. Really do. Everyone is always surprised when they see me. This who see me more regularly discern between the better and not so better days. Others look at me with a bit of a puzzled look. You can almost hear the unasked question, really dying? You just don’t look it.

The situation is surreal. Say it, and say it again. We do all day. Often followed by it sucks. And so it does. We know it, you know it. Let us not waste time with political correctness and the usual decorum that accompanies visits and such activities.

Do not worry about bringing anything. Tea is always ready.

Visit, or I may have to subject you to a scrawny ass eMail.

Baha’is are not allowed to be cremated. We end life by returning to the earth, completing the circle. Our ceremonies are short, except for this one prayer for the dead. It consists of 19 verses that are recited 19 times. Though not considered a holly number, the numbers 9 and 19 appear frequently in the Baha’i faith.

We are exhorted to be detached from all material things. They have such little intrinsic value that we should put our efforts in improving our spirituality as opposed to massing huge amounts of wealths and possessions. Is that Van Gogh really worth millions?

Another virtue we are told to exercise is that of moderation. We are told to use moderation in all things. Including moderation in using moderation. There is a mind bender. There is an issue at this point. Maybe that Van Gogh is worth the millions as opposed to something else I have in my art collection. A moderate price indeed.

I was back in hospital last Wednesday evening with a temperature of 38.5. My temperature was down to normal by the time we got to the emergency room. I knew the answer to the question about whether I was there to see a doctor or not, this time around. I think I also looked a bit sicker than last time we went in. The emergency room was quite busy. I was eventually ushered in. Blood tests were done, cultures raised. I was held in the unit all night. They had to draw more blood at three in the morning for more cultures. All to prove that I was the picture of health, except for the amazing number of metastasized tumours in my lungs.

And therein lies the issue. The lungs are being infected at an alarming rate, with the tumours frolicking hither and tither having the time of their life. I was sent home from the hospital and told to control my temperature fluctuations with Tylenols. Not much the system can do for me at this point.

The trials had failed. I was referred back to Dr. Hedley who is on sick leave waiting for his knee to heal. EMails were sent and an appointment was made to see Dr Hedley on Friday afternoon. Decision time.

I was optimistic. I had assumed that the inflamed liver was due to it fighting the tumours and winning the battle. The hospital visit appeared to make a mockery of that thought, but I held on to my optimism. Dr. Hedley came in on Friday afternoon specially to see me. He gave Janet and I a gigantic hug and we went into a consulting room. Shahnaz, my wonderful nurse was there, as was a student nurse. We had a 90 minute consultation. The decision to be made was the following:

1. Do more Chemo. This is the FULLFOX treatment. Side effects include numbness of the fingers and toes, extreme sensitivity to cold, to the point where you cannot open the fridge door. Ideal for a climate such as Canada’s. There would be a 30% chance of success, which in my case would mean slowing down the growth rate. We would know within three months if it was working and would have to stop the treatments in six months. We would then be back to where we are now.

2. Do nothing and let nature take its course.

The obvious question that came up is what does the status quo mean. How much time do we have. I had to ask since that was the only way we could come to some decision. The answer was quick and shocking. I have two months.

Dr. Hedley was quicker to add that the number is not written in stone, specially given my record. Regardless of its accuracy, the amount of time left is counted in months. What were we expecting. A year, Janet and I said. He shook his head sadly.

There it stands, two to four months.

We are numb. What is there to say. My sense of humour fails me. I have nothing to say. Janet says she does not accept the verdict. She is defiant. But there is little left to say.

I have spent the last few days letting people know. Tears have flooded involuntarily. We are all sad, living in a surreal existence trying to make sense of this. Two months is such a short time. This is October, then November, then December and the end. Maybe. Still too close for any level of comfort.

We are about to start doing the practical stuff. Transfer all the accounts to Janet’s name. Complete a power of attorney.  Put together a living will? Make sure we have people to look after the house for Janet. The furnace repair man, the contractor, the computer technicians. We are making a list tomorrow. Janet is taking time off work so we can spend more time together. It is all so mundane, and yet I feel fortunate that we have the time to do these things.

I have stopped day dreaming. Seems little point to it after all. What will my kitchen look like? My garden?  The thoughts are barely in my head before the streaming stops. Almost as if my computer has frozen requiring a reboot. I have trouble sleeping at night. I lay awake often to two in the morning until exhaustion takes its toll. Is that becomes dreams are now harder to come by? What is there to dream about? I have no idea what the after life looks like.

Will I see my parents again? Will there be a welcoming committee? Bunch of girls in hula dresses dancing and draping flowers around my neck? OK, so I watch too many movies. Will I see old friends, like Judy Elder? I imagine the after life as a continuum into eternity. A progression of the soul as it moves through the ether. The evil ones start lower while the saintly ones have the advantage o starting on a higher plane. I figure I am somewhere in the middle. I will be happy as long as I can Gandhi and not Hitler.

We have also started planning for the final days. We have an appointment with palliative for November 9. An appointment with the funeral home on Tuesday. The strangest part of all this is that I am basically healthy and sound in great spirits. I called the funeral home. Has the person died yet? No, I am working on it. Everyone is amazed that I am still laughing and joking. I figure these are my final days. I would like people to remember me with joy on my face rather than sadness.

My mother spent the last three weeks of her life in hospital. She was not in very good shape. I spent a couple of hours with her on what turned out to be her last night. We had always been very close, except during her cancer period. She turned to Fetneh to look after her. The last night was very precious to me. I showed up at hospital around midnight. Those were the days of lax security. We talked a lot. She had made sure that no one would be allowed to see her in the last three weeks. She said the way she looks is not the way she wanted to be remembered. She died the next morning. I remember looking art her body lying in peace, finally and thinking she is indeed dead. The soul has left.  That last memory has remained with me for the past 31 years. She was right. Remember us with the passion we had when were in good shape, not as we lie in pain in hospital.

We are going to Atlanta next weekend. Leaving on Friday, returning on Monday. It has to be short. We cannot take the chance of something going wrong while in the U.S..  We have been told that things could go from right to wrong in seconds. I believe it. I wake up sometimes, not feeling quite up to snuff. I return to bed to recover my strength. This morning was one of those mornings. I seem to be fine now. Nothing like a bunch of steroids and Tylenols to perk you up. The steroids open the lung channels, and the Tylenol deals with the pain. Miracle workers between them.

We are staying in a hotel in Atlanta. More privacy. Devin is coming down from New York, and Fetneh is joining us from Montreal. My family is planning on spending a lot of time with me over the next little while. Fo’ad has cleared his schedule and intends on coming up to Toronto to spend a week at my place. Our hotel is opening its doors again.

The whole situation is surreal. I will keep saying that. There is not other way of looking at it. You talk about your own imminent death. What kind of conversation is that to have? Defies sanity. Everyone keeps asking what they can do for me. The only thing left is to enjoy each other’s company. Talk, laugh, have a good time. Nothing else matters.

I am planning to have a plain casket, made from pine. I am told that these are available. I would like a stamp placed on top that says: Property of God. The style will be along the type that was used in raiders of the Lost Ark. I am not going to have a guest book. We will instead have markers of different colours available so people can sign the casket. I can have your names with me for the next part of my journey. That will also save Janet from having to send thank you notes to everyone. Consider yourselves thanked.

This has been a very difficult entry to make.  We received the news last Friday. I have had this open on my computer for a week now trying to find the right words and cadence.

I thank you for being there. For listening, crying and laughing. Hopefully more of the latter.

My very loving sister mused out loud one day, that there may be reason to think that I should not be alive given the rampaging nature of my cancer. Two pieces of my colon are gone, as is a small section of the small intestine. It was touching the bladder, so a small piece of that is also gone. Meanwhile I still gave cancer cells in my pelvic area, both lobes of the liver, and legions in one of my lungs. The cancer has made itself quite at home. My sister may not be wrong, and she did not make the comment to make me sad or angry or anything. It was a comment that commended me on my positive attitude that had carried me through this far defying the odds.

What is positive thinking? The book, the Secret, talks about it as concentrating really hard on a topic to invoke the powers of the universe. In the latest stuff I have been watching, the videos of Dr. Bruce Lipton, it involves the ability of changing the very nature of your cells and genes.

You get fired from a job and can see new doors opening before you. Don’t worry, it was a lousy job anyways, better times are ahead. A storm rips your house apart, and you can see renovations coming up. Time for that new bathroom you were dreaming of. and the insurance company gets to pay for some of the repairs. A cup half full at all times. There is a cartoon in one of the New Yorker magazines of a guy going through the desert, obviously dying from lack of water and all he sees are a bunch of glasses of water that are half empty. I am not sure how this link will be good for.

I have always been a cup half full type of person. Very few things have taken me down so completely as to be powerless. But the above examples are easy to talk about. What constitutes positive thinking when you have cancer?

Is it a question of thinking the condition into submission? Surviving for longer than expected? Smiling and laughing your way to your inevitable demise some point in the future? Making light of the pain, the discomfort, the disruption of your life and that of other around you? What is thinking positive in relation to cancer or any other chronic condition? Will the condition go away?

Everything I come across on this subject seems to believe that we can make changes to either our environment or our bodies through the mind. If that were the case, I would suggest we all put our minds together on Monday morning at 9:00AM and think about child poverty and it will go away. It will be solved. Let us wake up every morning and concentrate really hard on our bodies to never get ill. To live longer and healthier. If the mind were truly in charge, we should be able to accomplish all these feats in a flash. No more poverty, pollution, murder, hunger and any other ailment that plagues the world at the moment. To say nothing of the end of chronic conditions. We would just use our mind sets and prevent them from happening in the first place.

Baha’is in a number of Islamic countries are being persecuted. Baha’is in Iran particularly are vilified and persecuted beyond reason. Elected leaders are jailed regularly. Their assets are confiscated. They are charged with being spies for Israel. Our headquarters are in Haifa, Israel. They were moved there when the area was under Palestinian rule. We are not spies. Our statues forbid our participation in local politics. Egypt has issued national identification cards without which you can rent apartments, get jobs, open bank accounts and so on. You basically cannot live without one. They have listed only three religions on the cards, Judaism, Christianity, and Islam. The Baha’is took the government to court. They are effectively asking us to lie about our Faith. We requested that another option be added: Other. The request was refused, the court case lost. We are persona non-grata.

Whenever Baha’is are put in jail, we are asked to participate in a version of group prayers. The prayers take place in the privacy of your own home, but we are all asked to pray at a particular time, on a particular day in the hope that the power of all the prayers being said at the same time would invoke some sort of mercy for those jailed. My positive side says that maybe the prayers are working as things could be worse for the prisoners. On the other hand, none have yet been released.

Reality seems to dictate that there appear to be other powers at play. Powers beyond our us. Beyond our ability to influence them in any way. I was sure I would not get cancer. My mother died of it, but none of my siblings were affected. Yet here i am dealing with the condition. I am told that part of my success at dealing with things, the lack of huge Chemo side effects all have to do with positive thinking.

I know I have a good attitude. I am laughing a lot, joke around, and generally try to make the best of it. I keep telling people you have two choices to make, you can happy or sad. I tried the latter. It did not work for me. I am going to be happy as this condition evolves. Think of it this way. I want to make the best of the remaining years. Whatever time I have left, be it 2, 5, 10 years or more. Does not matter. I have a limited amount of time to spend with my wife, son, family and friends. We all deserve to make the best of it. We will talk about everything. Life and death. Good things and bad. The discussion is important. The conversations vital.

It is also vital that we be happy through it all. Is that positive thinking? Will it stop the spread of the cancer? I doubt it. Is that a negative expression creeping in? Not really. But we, collectively, wife, son, family, and friends will make the best of the remaining time.

I arrived on Friday afternoon after an excruciating time with the security people at the Island airport. The security lady did not accept the letter from the hospital that alerts them to my scissors. I need the scissors to cut the flange that holds the bag in lace. I do not need it all the time. I went through a period where my stoma was slightly inflamed which required trimming of the flange before sticking it to your body. This requires scissors, sharp pointy ones.

She did not accept that. Nor was she happy with the can of air freshener I carry with me. Much needed that can. Burping my bag, the art of subtly releasing the gases that collect in the bag, also releases an odour that could be used instead of fire alarms. Whole countries can be vacated to avoid the smell. Buy a smaller can she says. No such thing available, I say. Nothing doing. I lift my shirt up to show her the bag. I need the scissors for this. I understand she says. Why, do you have one of these? Well, uh, no. Then how can you possibly understand? I ask to see the supervisor. She is the supervisor.

She decides to make a couple of phone calls. She comes back with a photocopy of my letter, writes down my name and telephone number on it and the fact that I have a pair of scissors. We then tackle the can of air freshener. There is no way you can take that on board. I lift up my shirt again. This bag is full of shit. I am not swearing at you. Just that it is. The burping will inconvenience all the other passengers. I am past the point of embarrassment. People can look at my bag all they want. Other passengers are going by. Some stare at you as if some sort of terrorist evidence will leak out. Others ignore, or at least ignore the situation and walk through.

The security supervisor lady finally writes on the paper that I also have a can of air freshener, taking great care in writing the brand name on the sheet. I am not totally sure what the purpose of this paper is. I would hardly advertise my intent if a terrorist internet on blowing up a plane of ten passengers headed to Montreal to celebrate 9/11. I was sending a package to someone a number of years ago. The post office clerk made me fill out this very small green form. Maybe 5cm square. She wanted me to put my name and the contents on this form. Nothing really fit on there. I asked what this was about. She says they would need to identify the package if it blows up. I asked her what her think this tiny piece of paper would survive the explosion, and what makes her think I would put down the right information if there was a bomb inside. This was previous to 9/11. She just shrugged. Rules are rules.

We often put these rules in place as if they mean something. The security person at the airport has a piece of paper now that will tell everyone that she knew I had a pair of scissors on me as well as a possible incendiary device. Yet, she let me on. How does the piece of paper protect her? Or help in any way? Or have any purpose whatsoever?

I am finally allowed to go through with the scissors and the can of air freshener. 30 minutes of my life wasted.

I arrived in Montreal around mid day. I go for a walk. It is a nice day. I get a bite to eat at Basha’s. There is a couple behind me talking about work. She is speaking in English, he replies in French. There is proof positive I am in Montreal. The strangest part is that she speaks with a French Canadian accent. I have a light lunch and just observe people milling in and out. I am to join Fetneh at 6:30PM at Mahin’s for a Persian meal. Mahin has gone to extra length to make sure all the food is perfect for me. Organic meat and all. I go back to Steve’s apartment which he has kindly lent me and lie down. I have a lot of time ahead of me.

I decide to walk and see how far I get. Not a fast walk, but a gentle stroll stopping once in a while for a coffee and water. I am exhausted after two hours and not feeling very comfortable. I take a cab to Mahin’s to get there on time. The meal is delectable. There is way too much of it and I gorge myself.

We leave and I get back to my place to rest and prepare myself for Hong Lan the next day. I overdid things today and am going to pay the price at some point.

That point is not too far away. I have a restless night and develop a small stomach cramp just to the left of the liver. I also have pains along the bottom of my rib cage. These come and go and have there for a couple of weeks. Finally, I seem to be suffering from the beginnings of nausea which happens very rarely. I take a couple of Tylenol 1s so I can sleep, and a nausea pill in the morning. I carry a pharmacy with me at all times. I take a cab to Fetneh’s office and get there on time.

Hong Lan is gracious as always. She makes me watch a two hour video from a Dr. Bruce Liption. The basic message of a number of these people is that a positive attitude helps in fighting whatever it is you are ailing from. The cancer card is played since Cancer is at the forefront of all current conditions. You also feel very uplifted when watching the video. The message is positive and it appears to make sense. The seems something innately right about what he is saying.

The video goes into a discussion about genes and how they do not control our bodies as originally thought. The Genome project lists only 34,000 genes instead of the expected 200,000. The conclusion they have come to is that cells to the actual controlling of everything and we are understanding more and more every day the mechanisms used by these cells to do their job. Genes create the template upon which cells are created.

How are genes distributed to a new born child? It appears that the distribution starts taking place two months before conception. The thoughts, level of participation, attitude of the parents help determine how much of the father and mother’s genes appear in a child. It all sounds very cool. Two months before conception? What about accidental pregnancies? Too many questions arise and the original question remains unanswered. How is the distribution of genes determined? We still do not appear to know conclusively. Why do girls look like girls and boys like boys?

The discussion on the nature of cells was quite detailed. The only discrepancy tat I can see is what activates the cell to play its role. It is one thing to say that a cell receives a signal and acts accordingly. It gives rise to the question about how the signal gets to the cell. How does the body decide what signal goes to what cell? A bit of magic perhaps.

The world of appears, I have always imagined, works a lot like the body. A brain addressing and sending signals to parts of the body that are required to perform a task. All the parts of the computer have an address allocated according to predetermined rules. A signal is sent to a device at a particular address which then responds and behaves as expected. Once in a while, a device gets corrupted and ceases to respond and we have a general failure of the system. The signal that is sent to eh device in question is bidirectional. The device responds initially by sending a signal back confirming that it received the signal and outlining the nature of the orders it has received. No room for ambiguity here. Doe the body behave the same way? Are there predetermined addresses for everything? Who or what has decided the order of things?

The video also talks about nature vs nurture, and decided that the two work hand in hand. We are also introduced tot he concept of consciousness trumping both. We assume that what is written in us in our first years particularly are etched in stone. It turns out, as some of us have already discovered, that everything can be rewritten. The term of writing tapes is used to illustrate the point. The tapes governing your life are written pretty much in the first 6 years of your existence. These tapes can be rewritten. You can also, through the powers of consciousness, rewrite the nature of your genes. Consciousness trumps all. Positive thinking is the ultimate message.

I spent 7 hours with Hong Lan. I was exhausted by the end. We came out of the day with three action plans. I forget the third, so convenient n’est-ce pas? The first one is to turn this blog into a book. I will have to talk to Sharon Singer and Shawn Smith about that. The second is that I should pursue my picture taking more aggressively.

I was supposed to visit Mehran and Noushin at their farm in the Eastern Townships on Sunday. We rented a car for the purpose. The family has been fighting a cold for a little while now. It seems they have all sharing the germs. Mehran was still ailing and we could not go. Too bad. I hope he is feeling better. We might reschedule the visit for my next visit to Montreal. We kept the car and decided to run a number of errands for Fetneh. Stuff she would normally do by bus or taxi or with someone else who has a car. We also decided to pay a visit to my mother’s grave site. I said I have to prepare her for my visit.

We never made it tot he cemetery. The Montreal cemetery is on the mountain that is located at the centre of the city. There was a bike race and all access tot he mountain was blocked. We went in circles looking for a gap in the proceedings only to come away empty handed. Mom is not ready to receive me yet. Good news for me I guess. I was exhausted from the activities of the previous two days. The cram in my stomach was still there. It was more awkward than painful. I slept in the afternoon on her couch. Three hours. Longer than I expected.

Sunday evening saw us having Shwarma for dinner. I could not eat much. The meal of Friday night was still with me. In fact, it stuck around for about a week. We decided to visit Mahin again for a cup of tea. She was in constant communication with Fetneh wondering when we would drop in again. Gigi and Ivan were there. We had cups of tea. They kept filling them up. I had little choice but to keep drinking. We had a great time with the Vidals. I got to bed around ten. Two more Tylenol 1s to make sure I slept through the night.

We had breakfast with Mitra and somehow ended up spending the whole day with her. I had to leave to catch my 4:20 flight home (delayed to 4:45). Mitra and I are old friends. We spent much of my time in Montreal together. You forget these things until you spend a bit of time together again. It was very easy and relaxed. I was home.

Security out of Dorval was another beast of an affair. They accepted the letter and allowed to keep my scissors. The air freshener gave them hiccups until a supervisor placed it in one of their plastic bags. It fit in there perfectly making it a legitimate item to carry on. The security person then decided she had to check the rest of my bag. She went through everything, a bit like going through customs. I am not sure what prompted that exercise. She finally found an object to confiscate, my half used tube of toothpaste. Victory! I was free to go.

I rested the rest of the week recovering from the excesses of Montreal.

We read and talk about people not knowing what to say, or how to behave, but I think there is more to it than that. Not sure what it is, have not read any studies on the subject. Maybe I should. Or not. There appears to be some opportunism or reverse opportunism in all of this.

A bit of – I have no use for this person any more. They have stopped being fun. Turned into a downer. All they talk about it their chronic condition. Not interested in watching sports any more. Not interested in shopping and all the other things that made you fun to be with. Why is the chronic person so quick tempered and angry all the time? Time for new friends, or more to the point, renewed friendships.

People rising to the occasion, visiting, talking, making their presence felt one way or another. Everyone catering to their strengths. Some just dropping by for a visit, companionship. Others making conversation, others lending you their cottages, or places to while away your time. Whether one takes advantage of the occasion, the offers, is hardly germane. One appreciates the sentiment, the offer, the gesture, the sentiment.

People are constantly telling me they might die any time as well. Avoiding the crisis. Death is hardly ever a pleasant conversation, nor is the specter of imminent death, whether speculated as something that is about to happen tomorrow or in ten years, a very pleasant thought to live with. Yet, here we are. Are people attempting to defuse the subject? Is there a benefit to telling the chronic person that there is competition to dying?

We would surely leads our lives differently if we believed truly that we could die at any minute, negating the doomsday scenario that prevails the chronic person. We live our lives the way we should, planning ahead, looking forward to watching in horror as our children grow up. Waiting patiently for the grand children, the travels, the parties, the friends.

Only a crisis provokes serious concerns about imminent death. The concerns soon evaporate as reality set in. We do not know when we will be lining up at the pearly gates. Even my friend who is dying and is seeing the palliative doctors has really no idea when the day will come. We just know that we have to be prepared for it in a way others don’t.

The crisis that is my condition has subsided somewhat. People have returned to their daily lives. This just a footnote to keep track of. So it should be. It is enough that it has disrupted the lives of one family, let alone a need for it to disrupt those of so many more.

People left. Damn. I had to tell Janet. She would have figured it out anyways. We live in a 100 year old house. There is no insulation in the walls, except on the third floor which we renovated when we bought the house. The temperature started dropping slowly overnight. Winter decided to rear its ugly head with one of the coldest weeks of the season. Diana lent us a space heater which was moved from room to room. The fireplace helped a bit, though fireplaces tend to draw heat out of the house.

We found this guy name Amit who owns a company called NASA Heat and Air Conditioning. I have no idea what NASA has to do with it, and how he gets away with using that name. The furnace was installed within the week restoring heat to a very beleaguered family.

Janet decided that this was the year we would install air conditioning. I am not a big fan of these things. They suck power and give you colds. People tend to keep the temperatures way too low causing a shock the system when you go outdoors. We have promised ourselves to avoid those issues.

We have just had a heat wave in Toronto. Daily temperatures in the low C30′s. The problem has been though, that night temperatures have not dropped making the situation far worse than the daily highs would indicate. The city kept issuing heat alert advising anyone with a chronic condition to stay indoors. That is me this year. We sprung for the AC.

Amit tells us that we may be disappointed with the effect of the AC on the third floor where our bedroom is. Old house, old vents badly installed. We are lucky. The third floor is cooled down sufficiently for us to sleep in peace. We open the windows which might defeat the purpose of the AC. We like open windows in the summer. So much more pleasant to sleep that way. Heat rises, and we are on the third floor. The open windows should not affect the AC any.

We have set the thermostat at C25. We will monitor things and see what the best temperature is for our comfort.

Amit warned us to not react to the heat with a keen jerk reaction. The heat will pass. We have lived in this house for 11 years without AC, why now? The house tends to heat up toward the middle of July. We have fans everywhere to cool us down. We suffer through the months of July and August before things cool down in preparation for the coming winter. So why now, Amit wants to know.

We tell him about the cancer and the need to pacify the chronic sufferer. We have this conversation on Thursday afternoon. The AC is installed on Saturday. He would have installed it on Friday, except it rained making it impossible to do any work. He is a charming and accommodating man.

The installation is done in about four hours, as promised. We sit and chat for a short while. He tells me I should look up Swami Ram Dev who teaches people breathing exercises that have produced miracle results. Do I speak Hindi? The good Swami has a show on television. Among the many languages I speak, Hindi is not one of the preferred. Look him up on the web. He is amazing.

My car wash guy wants to know how I am. Now my furnace and AC guy is trying to help me as best he can. How amazing is this world and the people within it.

I have said this before, and I will say it again. The support from all sides has been amazing. The sources of the support have been amazing as well.

I went to get the car washed the other day. Let me know if I have told this story before. This is one of those drive though joints with surly men who dry your car at the exit. You have to get out of the car and the chain mechanism in the ground drags your car through the wash. Our Mazda 3 has windshield wipers that react to water on the windshield. They come when it starts to rain and turn off by themselves. Wonderful technology. I have to always remember to switch them off.

I got out of the car. Somehow the seatbelt caught my colostomy bag and ripped it off. Needless to say, a mess, on my hands, my shirt, my pants. Pretty much everywhere. There is guy who guides you to drive the car to the chains. He also sprays the car to loosen the grime in preparation for the wash. I am always amused that they only spray the drives side. The passenger side obviously does not get as dirty.

He did not even flinch at the sight of the mess. He immediately pointed his hose to the gutter and told me to wash my hands. No fuss no muss. Much appreciated. I went inside looking for a washroom. There were two reserved for the staff only. The girl at the counter was not much help. Sorry, staff only. I lifted my shirt to show her the damage. She did not hesitate and passed me the key to the washroom. I cleaned up and went back out to talk with her. She had reacted so quickly and again without appeared grossed out by what she had seen.

I thanked her for the keys and her lack of reaction. Oh, she say, I volunteer in an old people’s home, see this all the time. How are you, she continues, looking just a bit concerned.

As I said, support comes from the most unlikely sources.

Thanks to all.

Fetneh organised a lunch with a bunch of friends. I mentioned this before. We rented the Quartier Perse owned and operated by Mahin and her husband Siamack. They are friends of ours. Mahin barred Fetneh from making any decisions regarding the food.

We flew Porter from the Toronto island. What a Godsend that is. 15 minutes cab ride from our house is a small airport catering to short hauls. In this case Montreal. The Porter staff are very friendly and look after really well. We landed in Montreal and arrived at our apartment (courtesy Steve Mykolyn) at 3PM. This is more of a corporate apartment. Very sparse with the minimum amount of perks. Except for the abundance of magazines like Dwell, one of my all time favourites.

Fetneh joined us and I went to bed soon after she arrived.

This was very confusing. The flight was short and not tiring at all. Yet here I was exhausted and yearning fro a lie down. Janet and Fetneh went out for hamburgers which they brought back with them I was not hungry. Kept sleeping, waking up occasionally to the sound of the ladies enjoying their delectable dinner. Interrupted sleep is not an issue. My sleep is constantly interrupted by concerns of the colostomy bag coming off. I wake up regularly to check and make sure all is well. Waking up to the sound of people enjoying a meal is a whole other matter.

I was tired again on Friday. We went shopping int the morning. Had a cup of coffee and lousy apple turnover at this small coffee shop. Janet wanted to go to Simmons. Not sure why they do not open a store in Toronto. They would make a killing. Maybe Toronto is not fashionable enough for them.

I got tired very quickly. The nature of my fatigue appears to be changing. I cannot describe it very well. I seem to have energy until the batteries run out. I collapse and sleep off the fatigue only to start the process over again. Not much fun, and difficult to predict when the batteries are about to run out. I should talk with the Energizer people about this. I wanted to show Janet some stuff. No energy. I went down to the food court and sat down to see if that would help. It didn’t. I was not sure is If was noxious, or just tired. Was it fatigue or more than that. What more could there be. Janet wanted details which I could not supply. Working through the feelings.

I walked back to our apartment. Walking is often good for working things through the system. They would make us walk in the hospital. We had to walk three or four times a day. That was almost the first question the nurse would ask you. They made me walk a couple of days after surgery. I am not sure why walking has the effect it does. I often find myself burping a lot as the gases make their way out of your system. The stomach sometimes comes alive, which is a good thing. Walking is good. the walk back to the apartment was not long, just long enough. I slept until Janet came back. Still stayed in bed to rest for the evening.

We had dinner on Friday night with a few of our friends. Some of them would not be able to make it on Sunday afternoon. They wanted to see me, make sure I was OK. Don’t trust my entries in the blog. They want to hear it from me, see my face, make sure I am not lying. These are old time friends, since we first came to Canada some 42 years ago. We had a great time. Went to Chez Gauthier which has seen better days. The food was terrible, service went along with the food quality. No sense in rocking the boat. We were served an hour late. My brother went to see if he could speed things up to no avail. I went up to our waiter and told him flat out that I had cancer and needed to eat right away. Past my lack of food tolerance. Play the cards you have. They served our food within ten minutes, though I doubt it had to do with anything I said.

The company made up for the lack of quality elsewhere.

We spent Saturday having lunch with Ignacio at the very wonderful Hotel Saint Sulpice in Old Montreal Highly recommended. Good food and great service. I had a lobster club sandwich. Did not know club sandwiches came with lobster. On the other hand, why should they not? I have a soft spot for club sandwiches. Toasted brown bread, lots of mayonnaise, and more of it on the side. Mouth watering.

Fo’ad came by the apartment for a visit while I rested. Janet went, you guessed it, shopping. I rested and talked with my brother and eventually went to sleep. We had dinner at martin’s house. Great company and wonderful food made for a great evening. My main regret in all these things is that I have to leave early. Seems like I am cutting things short.

Brunch on Sunday at Fetneh’s apartment. Lunch at Mahin’s.

Fetneh tells me 56 people showed up, a lot of whom I do not know. A bit ironic that a lunch thrown in my honour attracted a bunch of people I do not know, who did not introduce themselves to me. It did not bother me any. Interesting to see all those friends and relatives. Interesting to see so many children. The next generation.

Mahin is an amazing cook. The food, all Persian was astounding. White rice, green rice, rice with fava beens, sour cherry rice (my mothers favourite). All of it complemented by kebab. Mouth watering, melt in your mouth, delicious Iranian kebab. I ate lots. No repercussions.

I sat outside and let people find me. I spent a lot of time talking with Barb Puky and her husband. Nushin and Mehran graced me with their time. Funny thing about friends of long standing. You do not need to get to know each other. You pick up where you left off. No conversation is taboo. We have gone through too much in our history to let small things get in the way.

Barb Puky has been friends with us since University. She was in the same dorm as Janet.

Nushin is related our family through one of my great uncles. My grandfather had two wives. The second after the first passed away. Nushin in related to us through this first marriage.

Mehran’s parents were friends with my parents. That is going back a long ways. Makes for easy conversations and a very relaxed afternoon.

The end of the afternoon was more emotional than the beginning. I had expected it to be the other way around. I was caught off guard. I did not cry when I met everyone. I did cry when we left. Everyone in Montreal has been very supportive. I cannot thank them enough.

Fetneh works for a lady called Hong Lan. The best description I have of her is that she is a Traditional Chinese Medicine Naturopath. Hong Lan asked to meet with me to discuss my situation. She appears impressed with the progress we have made and would like to contribute. I cannot tell you what we talked about. The conversation went on for over two hours including a deep breathing exercise. I was and still am overwhelmed by the amount of information she parted with. I will be back in Montreal in September for a second conversation.

I think that is all for now.

I am bummed out. This has been an up and down week. My reaction to Neulasta went as expected. Tired, achy bones and so on. I only tool three Tylenol 1 pills to drive away the pain. Not bad considering my first experience with the drug. I got a lot done, which may be part of the problem.

I am not sure what it is that drives us constantly to the point of exhaustion. I discussed this briefly with a couple of other cancer patients and we all came up empty. It seems to be desire to feel useful again, after feeling like you are a parasite.

Did the laundry, OK, only half the laundry. Got the clothes in the washer, but no energy to transfer them to the dryer.

Visited my friend Sherry Ivankovic in Kitchener who has melanoma. She was supposed to be dead two and half years ago, but is still going strong. She also had a stroke to complicate matters which makes for interesting conversations. She loses track of what she is saying half way through a conversation. She repeats herself telling me a story on the phone, repeating the story in an eMail and again in person. Every iteration is as energetic as the first, as if is is the first time she is telling it. To all accounts, every time is the first time as far as she is concerned. We compared cancer notes. The similarities are endless. It helps to talk., Almost a sigh of relief when you notice the identical reactions to the drugs and our situation.

I visited another cancer patient, this one with pancreatic cancer who was admitted to the palliative care centre at the Princess Margaret Hospital. She should not be there right now. She was very strong when I went to see her. She was being released to go home for the weekend. She was admitted to allow the doctors to determine what pain medication would work best. Her pancreas and spleen were removed about eighteen months ago. She is still gracing us with her presence. I cannot imagine the amount of pain she is in. Stoic as ever, she still suffers. Morphine doesn’t cut it any more. New pain medication is being tested. I stayed with her for a while. Watched some soccer with her father. We talked quite a bit.

The conversations between cancer patients are very different when we are alone A lot more intimate. Small bits of information come out that are usually kept in the dark shadows of our existence. We allow ourselves the luxury of divulging and talking about stuff we would not normally discuss, even with our most intimate friends. A lot of stuff takes a while to digest, internalize, and finally verbalize in some fashion. The last part does not always happen. We prefer to keep some things very private. Don’t ask me for examples. Surely that would defeat the whole reasoning behind keeping some thoughts private.

I have been experiencing some pains for the past few days. I had to tell Janet about it. Notice the use of the word had. Did not want her to be concerned. I tend to think these things are normal and to be expected when we are subjected to our drug regimen. I had to tell her because I kept groaning and wincing every time I changed positions. The groans were totally involuntary and gave the game away. She is as always concerned and does not anything a being normal. Hard to know where the lines are.

I went to see an acupuncturist. My sister, quite rightly, thought it might help with increasing my energy levels, and might even affect my white blood cells in a positive way. I have tried acupuncture before quite successfully. That was years ago and I have lost track of my acupuncturist’s whereabouts. Hard to call her my acupuncturist when I saw her so many years ago. Went to a new person. A man named Tak. An experience not to be forgotten.

I arrived on time. Took off my shoes and went into his office which occupies the basement of what, I assume, is his house. I was asked to fill out the usual forms outlining the family history of diseases and conditions. Name, address, date of birth and so on. Illnesses during childhood: none. Illnesses during adolescence: none. Recent conditions and operations: colon cancer metastasized. Parental conditions: mother died of lung cancer, epileptic. There was last sheet that I presumed outlined side effects and conditions of taking the acupuncture. It was written in paragraph format while the rest of the document had questions and spaces for answers. I ignored the past page. This upset Tak enormously. I was chastised for not reading the page and providing answers. He was quite brusque about the whole thing. A man in my condition has other things wrong with him, and those are outlined in the last page.

I read the page and found nothing that pertained to me. I was fine except for the cancer part, and the fatigue, and low white blood cells. No gastro-intestinal issues, or whatever else he had on the list. You cannot imagine how upset he was by this. Impossible. This has never happened before. A man in my condition must have other things wrong with him. Whatever. I do not seem to fit into his mold. He seemed quite exasperated and finally asked: So why do you have cancer? The why question, as if we are to blame for getting cancer. There I was at the mall, there was a sale on and I thought I would give it a try and see how it fits. I replied that I would be more that happy to hear his reasons for people getting cancer. The answer to this riddle, should he know it, would make him a multi-billionaire. He did not appear to be amused by my response. I cannot help you, he says, since all you have is cancer.

We decided to give it a try anyways. I found the experience very relaxing. He left me on the table with the needles inserted in various parts of my legs, and a couple in my neck. The couple he inserted in the soles of my feet hurt a bit, but the rest were easy to get along with. He left me for a bit and I relaxed on the bed. Practiced my deep breathing exercises, and said some prayers. Almost fell asleep. He came back, removed the needles, made me lie on my side and applied some heat to various parts of the back and neck. Over. Done. Good bye. Paid him his $75. What a rough man. What a horrible way to treat a patient, let alone a cancer patient. I will have to write him expressing my dissatisfaction.

My nurse, Barb came by for her visit. She recommended another acupuncturist with whom I will get in touch shortly. What a flame out that experience was.

I have a lousy sense of direction. I am one of those people who would get lost coming out of a paper bag. I ask for directions all the time and fail to follow them, or misunderstand them or something. Such was the case when I went to Kitchener to see Sherry. A trip that should take a maximum of 90 minutes tool over three hours. I was quite out of sorts when I got home and went to bed at 6:30.

I have been totally exhausted ever since. I have been resting and sleeping a lot. Which is why I am bummed out. The Neulasta was supposed to have kicked in by now, boosting my energy. I will rest for the remainder of the day.

Tomorrow is a whole new adventure.

The sessions are a safe place where people are encouraged to speak their mind. Someone taking notes might appear intrusive. I take notes to ensure accuracy in my posts and thoughts. The wording of what is said is so important. Did they say angry or upset? I have an excellent memory for these things. Is there a difference between taking notes inside the sessions, or jotting down similar notes after I walk out? There is a difference in how people feel as you are taking notes in front of them. I would have hoped that the openness which I showed would have been reassuring, but it appears not to be so.

No pictures either. I am allowed to take them outside the session but not inside. Not sure how that works. It doesn’t. So no pictures. I made a point of letting everyone know I was taking notes. I gave them the blog address. I asked before being allowed to take pictures. What happened between the second session where people were so open about letting me take pictures of their thoughts, and today?

I have made a major point of being discreet in my postings. This has not been difficult. Not an imposition by any means. A given under the circumstances. I have been very careful with the information I divulge. There has been nothing of a personal nature, for instance. The participants will recognise themselves, but no one outside the group will be able to tell who is who. The nature of the blog has also been positive. At least I hope it has. Am I surprised that people are uncomfortable? No. I was hoping for a bit of largess considering the huge amount of good this is doing to so many people.

The comfort of the group is of paramount importance. The nature of the post will change starting with this one. You will still benefit from the highly polished and amazing art that I paint, but there will no references to others, or a description of what they have painted. There will be comments, or more likely questions opened for discussion based on what was said. These will be of a more general nature. Human beings being what we are, there will also be cross fertilization going on. There is really no way of holding back a thought process that was provoked by what was said in the sessions. These might be used to start a fresh posting based on that thought. No offense intended to anyone. No judgments. No recrimination. No antagonism. The reactions of one and all are fully understandable and do not need either explaining or defending. It is what it is. A bit like having cancer. It is what it is.

The choice of colours in our paintings is interesting. Mine are pretty stark with a dash of colour. Others exhibit much more lively or darker colours. I have mentioned the liberal use of blue and green. The first dealing with water and its attributes, the second with new life, and freshness. Both dealing with coolness and calmness. Using darker or lighter colours reflecting our mood or state of mind. Even within a painting, starting with darker colours and somehow gravitating to lighter ones brings up a host of questions. Is your mood getting better from painting? From attending the sessions? From talking? From being around people you feel safe with? Why did you feel darker at the beginning?

A thought that crossed my mind at one point that had nothing to do with anything in particular has to do with interpretation. I have had a lot of trouble with art in general. How do you know if something is good or not? Does it matter? I often look at art and wonder if this is a piece that will be famous in 10, 15 or more years. And I missed the boat by not buying it now. I was talking with a friend about this, one day, oh so many years ago, and they said that I should stop torturing myself. Art is what I make of it. What I see. Nothing more or less. We bought a piece from a student at an art show a few years ago. It is a narrow piece painted on wood showing a clothesline from which hang a number of t-shirts that are a bit torn, with an inscription in Arabic. Second from the right is a perfect t-shirt with the Roots logo on it. I asked the girl about the political message behind it. Much to my surprise, she said there was none. She just painted it. She designed those t-shirts and like the look of it all strung together. I was shocked to say the least, and based on that premise alone, had to make the purchase.

All this to say, is there a possibility we are over-analyzing or paintings? Seeing convenient truths or perceived truths where there are none? I am not sure, but at some point, felt that sometimes, the message is pretty clear. Or we just painted for the fun of it. Let it be. Not sure.

My Painting

Cancer Thistle

The painting depicts a thistle growing inside the body of a person, well OK, a man. The thistle represents cancer with its amazing roots invading the body.The thistle has some medicinal purpose. I chose it because the thistle is full of thorns that hurt when touched or come into contact with. I played rugby while in boarding school in England. One of the fields we played in was full of thistles. It was so bad that you were careful to tackle someone only if there was no thistle around. Added a whole new dimension to the game. The person is balancing Anger and Tranquility on the two scales neither winning the battle but equalising each other. Anger wells up in our bodies and is quelled by tranquility. The person is standing on a bed that gives him strength. The list includes: Steadfast, Friends, Support, Hospital, Drugs, Food, Alternative, Meditation, Visualization, Safe Place, Prayers, Faith, Strength, Attitude, Perseverance, Humour, Depression, Self Pity, Exercise, Lies, Truths, Family, Insurance, Finances, Travel, Rest, Sleep, Guilt, Participate, Cook, Clean, Shop. There was little doubt that the moderator was moved by the piece and thought it was very powerful. But again, no discussion. We had run out of time. The eye is not red, contrary to what it looks like, but brown. No idea why it looks red.

The Real Thistle - with Bee

I am saddened by the events of the day. Love the people who attend. So it goes.