So it was on this Tuesday. The Chemo Daycare unit lost track of the prescription for my Chemo medication. They had to phone the great Dr. Hedley to get a renewal. I waited an hour and a half. The waiting room was full. I just assumed they had fallen behind. I finally decided it was time to ask questions when I discovered what was causing the delay. This was not good news. The had just received the go-ahead. We now had to wait a couple of hours for the pharmacy to prepare the drugs.

I had arrived at the vampire clinic around quarter to ten. My two favourite nurses were there, Delanie, and Viviene. Delanie took on the task of sucking the blood out of me. This was going to be a full blood test including the liver enzymes in preparation for meeting Dr. Hedley on Wednesday. I mentioned to Delanie how impressed people are with the committee approach to looking after us. She smiled and said that is reserved for complicated cases only. Ahh, more information. Every visit yields new insights.

This was going to be a long day. The whole process was finished at four in the afternoon. All the nurses who looked after me were terrific as usual. They have looked after me before, making for a very relaxed afternoon. My blood count was good. I am hoping to avoid Neulasta for this week.

A couple of interesting observations. One of the patients would not shut up. I watched him in the waiting room. He changed seats three times and engaged the people sitting beside him. They never said a word as he started his conversation and continued until someone else came along, or he was interrupted or something. He sported a small red button that loudly acclaimed that Cancer Sucks.

These two ladies walked in as well. They were a bit agitated, a bundle of nerves. One of them was the companion. They were both wearing the same T-shirt that said something about supporting some cancer fighting initiative. The tag line read Kicking Cancer.

I could not help but wonder at both these displays of distaste with cancer. I do not see the point of either. Both appear to me to be negative in their outlook. We all know cancer sucks. No ones needs to be reminded of this less than the other cancer patients in the room. Yes, it sucks, but what are you going to do about it? Railing against the intrusion does little except make matters worse.

Kicking cancer sounds a lot like you are constantly kicking your self somewhere you should be avoiding. In my case, that would be the liver. Already painful enough. It does not need to be kicked any more. It has gone through enough punishment already.

We have covered this ground before. We surely need more love for our bodies. Fetneh is always reminding me to talk to my liver and tell it how much I love it. Amongst all the other stuff we are doing, it is surely helping. One of my cats, BooBoo Long Paws, insists on lying on me for a bout five minutes almost every day. He lies on my stomach and purrs. We are sure that my liver responds positively to that as well. Whatever. We are full of superstitions about all sorts of things, why not add this to the list.

My body has stopped reacting to the Chemo drugs. Even Avastin is no longer causing the destruction to my nose. I have not had a nose bleed in a couple of weeks. I was talking about this with a friend of mine who said, wow, this is a good thing, no? No, is the answer. The body has rallied summoning all the forces within the immune system, to render all the drugs useless. This is not good. We are seeing Dr. Hedley on Wednesday for a longer discussion on what is next in this new life of ours.

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.

Nothing new to report as far as the session itself is concerned. They were a couple of hours late. I am not sure how this process works. They were late because the drugs were late in coming up from the pharmacy.

They knew I was coming. We had an appointment and everything. I have not missed one yet. Always on time. Predictable. And yet, here I was waiting a couple of hours for the drugs to come up. My blood count stood at 6.6. I was hoping for it to be higher given I had just come off a Neulasta week. Beggars can’t be choosers. Just go with the flow.

All is not lost. We are ushered in to the daycare chairs. I was offered a bed or a chair. Much prefer the patter. New nurse, again. They connect you to the saline solution to flush the system and make sure you have enough liquids in you. This is a blessing on hot days when you dehydrate quicker than you can possibly imagine.

Janet drove me in. She has the week off and was going to see her father after dropping me off. The Shriners are in town, and have blocked road access tot he hospital. I had to walk a couple of blocks to get to the hospital, through the Shriners who were almost ready for the parade. They do a lot of good work, but look to me like a bunch of overweight white men well past their prime. I wonder what their future is, and who will take over their good deeds.

The saline solution was good for me given the couple of blocks walking through our extreme heat. Really hot, over C30degrees. Did not cool at nights either staying well in the upper twenties all week. The house is still cool, but I dehydrate very quickly. No amount of water seems to do the job.

Janet came to pick me up around 5PM. A number of patients kept asking for the score in the FIFA game. The atmosphere in the daycare was light. I noticed more young patients than before. Does not bode well for the future. There appeared to be fewer patients as well. Not sure why. As I said way up above, not sure how their system is set up, even after being in it for almost a year.

The Chemo week itself has been more interesting than usual. My reactions have been the same. Fatigue mostly, though less than usual in its intensity. What has caught me by surprise this week is the nature of the fatigue. I wonder if it has to do with the heat. I seem to be able to go on for while, than suddenly collapse. A couple of hours of sleep and I am back on my feet, only to repeat the process. There appears to be no rhyme or reason to the fatigue. I am not extending myself any more than I have in the past. The sudden downturn is what is confusing me. We will see if this repeat in the next Chemo session due in 10 days.

I am now waiting for Judith and Arlin to come over for coffee at the Rooster. Janet has gone to a friends farm for the weekend. I insisted she go. Will do her good to be out of town and away from me, even if it is for a couple of nights. She should come back well rested.

Thanks for being there.

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.

I sat in the backyard this morning, reading the paper, cup of coffee in hand. So cliche. So necessary. Why do we insists on living in a cold country? Warm climates are so much more hospitable, except for the deadly bugs and incessant hurricanes. Put that aside though, and you end up with a beautiful place to live.

There has been a lot of talk lately about global warming and rising sea levels. The possibility of islands disappearing and lives changing since the original habitat is about to disappear. There are always articles that prove the contrary, all going to show that we are really not certain about what is going on. There was an article recently that talked about an island that was changing to adapt itself to rising sea levels. I forget where I read the excerpt, but the original is here. Makes for an interesting read, if only you subscribe to the magazine. An island that is changing itself? Coral reefs reacting to rising sea levels?

Just goes to show that we, humans, as part of a natural species can also morph and change with the times. We have proven over and over again that we have the ability to adapt. We get sick and our bodies somehow change and adapt to the new conditions. We get tired and the body goes into overtime attempting to rectify the situation. Time and again, we discover how little we know. The more information we have, the more confused we get.

Malcolm Gladwell talks in one of his books about doctors being given information about patients and asked to provide a diagnosis. The more information they were given the more incorrect the diagnosis. The exercise found, in fact, that only four pieces of relevant information was required for a correct diagnosis. I think relevant is the operative word here. Only four pieces of information? We are now providing diagnostics on people with thousands of pieces of information. A CT-Scan creates 300 pictures with one click of the button. The technologist has to go through them and pick put the relevant picture that depicts the information he wants. Is there too much information?

I am not sure it would make much of a difference in my case. Reading the report is always a bit of a puzzle being deciphered. The last report mentioned the lack of tumor activity in the pancreas and kidneys. I did not know that was a concern, and it apparently is not. But the technician noticed the lack of activity and decided it was worth mentioning. By the way, no brain tumors either, not that we were looking there. And none in … Too much information.

The body has adapted. It is compensating for the drugs and allowing them to control things, but not have an effect on them. I was at the St Lawrence Market this past Saturday. One of the shop keepers who is aware of my situation asked how I was. I have developed immunity I said. Good thing no? No, bad. I explained why. He started laughing. It sounded like a good thing. Who knew developing immunity can be a bad thing.

I have been tired all day. Did some laundry, but am unable to finish it. Slept in the afternoon in spite of the construction next door. Still tired. Resting. Watching TV. I cried watching the opening scenes of Star Trek. I have seen this movie many times. There is really nothing to cry over. There I was, sitting on the couch crying. Weakness all around.

I am going to see a friend tomorrow who has melanoma. She was supposed to be dead three years ago. She says it is hard to kill a bitch. She has been so determined to stay alive that I am now forced to go see her. Not very considerate of her. I am looking forward to the visit. We are both putting on weight because of the steroids that are part of out diet. I wish I was building abs or something. I am, instead ballooning. I am up to 190lbs and rising. This after going from 210 to 180. I think there is a rest coming from the Chemo treatments, and therefore from the steroids. Weight should go back down. Hard to know what to wish for.

My new Chemo cocktail is called FOLFOX. It is comprised of three drugs. Always three. This regimen is given over a two day period. How do they come up with these things? One drug one day followed by 5FU over 22 hours. A second drug the second day followed by more infusion. Sounds exciting no? More side effects, though nothing new, White, red blood cell depletion along with platelets being affected. Nothing I am not going through now. All I need now is to develop immunity to Neulasta.

I get 5FU now. The attach the tube to your chest. Turns out the heat from the body improves the flow of the infusion. I give off a lot of heat. The 46 hour process of the infusion is usually done in 40 hours, and sometimes less, depending on my level of activity. The 22 hour process with the new regiment should also run for a shorter time period. Two days of treatment. Not looking forward to that.

This entry has rambled a bit. I am tired and will use that as my excuse.

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.

I remember the trepidation of the first to or three sessions. What to expect? What will happen? You hear such stories from the good to the very bad. He went back to work after four sessions, to lost their hair and retired to the basement. I have indicated many times that my reaction to Chemo has been muted to say the least. I now take public transit to get there. I have taken public transit to come home as well. That will probably happen next week when I go for session 16. Janet and Devin are both working.

Public transit is a pretty good way to go. Takes me from almost the hospital front door to almost my front door. Cannot ask for anything more. Truly a non-event. My immediate reaction to Chemo is watering eyes. Not sure what that is all about. The eyes start watering and don’t stop for 24 hours. Next comes fatigue and the bowel system is thrown off balance. The rest is up in the air as it where. Some things show up and others don’t. Can never tell. We just wait things out. My last bout of Neulasta was not bad. No real pain, no more fatigue than usual. Am I building some sort of immunity to that as well?

I have always had a very strong immune system, which is why the cancer came as a bit of a surprise. That system is now holding me up. I am doing well, I am pretty sure, because my immune system is holding things up. They say the immune system gets compromised by cancer. I am sure mine has been compromised as well. Though my compromised system appears to be behaving very well. I am still forbidden from consuming raw meats. I miss that a lot. Sushi and steak tartar are two of my very favorite meals. Neither has passed these precious lips in over nine months. Sigh.

There I am sitting in the chair at the Chemo Daycare. I have been asked many times why I call it that. The answer is simple. Get off the elevator on the second floor and there are directions that basically say, Chemo Daycare, this way. Once at the end of the corridor, there is another sign that says something like Chemo Daycare reception. Not much left to the imagination.

Back to the story. There are two types chairs at the Chemo Daycare. Both allow you to lie down. The newer chair turns almost into a bed. You keep leaning back expecting to keel over at any minute. The chairs are great for sleeping in. The daycare is moving to the fourth floor in August. A whole new experience awaits us with new airplane like seats. I don’t think anyone will want to leave the place. New seats, new environment, new layout, same old drugs.

I keep digressing. I am lying in my chair, drugs coursing through my veins. Cannot sleep. Lying there watching my nurse go about her duties. I had a new nurse, Celeste. She was very official, as they all are when they do not know you. Check the Blue hospital card against your arm band, check your date of birth, check the drug regimen received against what is in the computer. The list goes on and on. My nurse relaxed when other nurses came by who know me and told her I am a trouble maker and she should give me a hard time.

Really, there is a story of sorts here. I am lying in the chair, failing in all my attempts to sleep. Warm blanket is covering me, pillow under my head. Drugs are coursing through my veins. You knew that already. I decide to look at the chart that the nurses follow in administering the drugs. There are six pages of instructions. Well, only a couple of pages of instructions, most of which is gibberish to me. There is a page that identifies the drugs I am supposed to be getting. Absurd amount of detail in there. Good for them to know, gibberish to me, though I think I might make a copy of it and browse the web for misinformation about what it is that is having a party in my body. I finally arrive at the first page.

There it is in all its glory. You are at the Princess Margaret Hospital. Your number is whatever. I am not giving that out, You might be jealous of the treatment I am receiving and decide to try it out for yourself. No such luck for you today. You will have to suffer through it in some semblance of virtual reality. The first page is also where it says that this is Session 15. On the same line as the session number is another entry which says, Intent: Palliative.

Yeah. There is that word. The end game. That is where it is all headed at some point. Palliative. I knew that. I have been told enough times about how complicated this is, and how advanced I am. That is all talk. Intellectual stuff. This is a bit stark. Sterile. Lifeless. You are headed to palliative, not today, or tomorrow. Sometime in the future. Five years? Ten years? More? Less? Hardly seems to matter. You are headed there at some point. Time to clean up the bedroom.

Death is such a bizarre concept. There is no coming back. No one has been able to put the experience into words. Here we are at the death bed of John Truro. Cameras rolling, microphone on, How does it feel Mr. Truro to be gasping your last breath? It feels like, well, let me put to you this way……. Just like in the movies where dying people talk to the very last minute. I watched a friend die once. It was nothing like that. The final half hour was very quiet. His deep breathing filling the room in the palliative ward. The priest came and went after uttering his blessings. The nurse came and stroked his head until the final breath was uttered. There was little left to say. Mixed emotions and feelings.

The person lives on for a few months. People talk about him. Then nothing. An afterthought. The name comes up in certain situations, but really, nothing vital is left. There is nothing wrong with this. Just the way life comes and goes. My father died in Swaziland. I was first on the scene. My sister joined me shortly after. We were left in charge of taking care of his few possessions. A few articles of clothing, and books. So many books. All in Persian or Arabic. We had no idea what they were about. We shipped them all out to some library somewhere. They would know what to do with them. That was in 1999. We closed his bank account. Buried him. Went back two years later to unveil the stone. Done. Finished. All gone. We obviously talk about him once in a while. He was a man with presence who commanded respect. He had in depth knowledge of the Bible, the Koran, and the Baha’i writings. One of the few who managed to reconcile all the messages in each with the others. But his light is extinguished. His name a mere anecdote in the history of life.

I came to the conclusion a few years ago, that we live through a few generations, then disappear. This explains the number of photographs of people that appear at flea markets all over the world. Piles and piles of pictures. Of no one in particular. Someone at some point. Someone to somebody, but now, no one. A smiling face in a pile of other smiling faces.

My friend Kali, who joins me for lunch every couple of weeks, asked me the other day what I though my legacy would be. What a question. Do we think in those terms? My pictures was the reply. I cannot imagine what my family will do will all the stuff I have that deals with photography. The books, cameras, and other equipment. I keep a lot of it for sentimental reasons. Others I should discard. I just had one of my film cameras repaired. The camera is 40 years old. I will use it again. What will they do with it?

Palliative? Not yet. I still have a lot left to do.

It turns out that I have a lot of options.

I went for my Chemo session last Tuesday. That is Tuesday the 11th of May. My blood count was. The admin staff were helpful. Quite a change from the previous week. More on that in a separate post coming today. The nurse let me know that this was my 14th session. I am a walking talking Chemo boy. The drugs came, and I was topped up. Got the Neulasta shot on Thursday. I slept for a week. My energy levels returned yesterday. I am all excited about New York where I will be tomorrow at this time. Things are good.

We were at the Fraser’s farm a couple of weekends ago. I designed a couple of new camera bags. I have to render them, sew up a couple of examples. Yes, I can sew. Learned from my mother. Then attempt to find a manufacturer, put together a business and marketing plan. The usual routine. The market is short of good practical camera bags.

I have also decided to start designing web pages for small business. Nothing fancy, no flash or anything complicated. Simple four to five pages of static stuff. I will also offer to maintain the site, update the software, make sure it is running, do the marketing for it and so on. I have revamped my photo site at farokh.ca. I will be creating a template of sorts in the next week or so. Then start calling or sending eMails out to some prospects that I already know might find this useful. I can do this from home, and be totally online, and at my own pace.

My friend Steve Mykolyn suggested the other day, that I start writing camera and related equipment reviews. I have thought about that. I am coming up with a template for that as well. I will probably focus on the every day user who is pondering buying a point and shoot camera, or an upgrade. None of the professional stuff. Professional, or semi-pros such as myself are pretty well versed. There are sites that pander to us. No one seems to be looking after the casual user in a meaningful and fun way.

We are re-doing our garden this year. Thinking of building a new pond, a shed, plant some new local plants. We hired a gardener to help out. I do not have the sustained energy to carry out the changes.

Busy? Just a bit. It occurred to me the other day that I am trying to find myself – again. I have no idea which of these projects will come to fruition. Maybe they all will. Maybe only one of them. It is becoming an interesting exercise. I am concentrating on the web design first. Once the template is set up and the eMails are sent, there is little left to do, except maybe a bit of marketing. Might even be fun.

I was told at the beginning of this adventure that I have some time to live, anywhere from tomorrow to five to ten years. Or more. Or whatever. I told Fetneh the other day, that I have to modify the numbers a bit. I had my operation about 9 months ago. I now have between four and nine years to live. I can be so funny. Five to ten sounds like so much more time. I could go one for the next five to ten telling people I have between five and ten. No one would be the wiser.

You go through life expecting to die of ripe old age. No one really expects to die sooner. No one is out there saying things like, Oh yeah, I expect to be fall out of a building by the time I am fifty. Cancer hits. The doctors do not like to give you a time frame when you would expect to die. Bad vibes there. The problem that appeared this week in my ever so feeble brain is that you now expect to die earlier, but when exactly? Not that you knew before. Expectations are now set for an early passing on. But when? This is getting stupid.

I went to the hospital yesterday, home away from home. It is amazing how quickly you adjust to your new surroundings. I went to spend a bit of time with a friend who was doing blood work and meeting with the palliative care people. She does not have much time left. She gave her blood to the vampires, and we went for lunch. Her husband was there. He keeps calling me the other man. The goal is to just talk, laugh, eat. We are going out for Ethiopian food when we come back from N.Y. I am going to cook Persian rice for her one evening. We do what we have to do.

I also ran into my lady with no nose. The cancer has spread a bit. She is due for more surgery on her cheekbones. We talked a bit. She was on the verge of tears. Don’t know what to say.

I look amazing. Everyone is saying that, so it must be true. My hair is growing, albeit (great word that!) slowly. I have apparently developed immunity to hair loss. Which is a good thing. I just read today that losing the hair in your ears results in losing your hearing. I am saved, I tell you, saved.

I am seeing my psychiatrist in June. A good talk is to be had. So much stuff to discuss. So many thoughts, so much stupidity, confusion. It will all pan out.

Thanks for listening. Thanks for being there.

I went back in on Tuesday morning are 8:30. The earlier the better. Takes an hour for the blood work results to make their way to the Chemo Daycare. Once approved, it takes about two hours to get the drugs ready. It pays to go in early. I went home after the blood work. No sense in hanging out there. We live about ten minutes away.

Got back to the daycare at precisely ten for my appointment. I explained to the admin person that my white blood cell count had been low and so on. Ahh, she said, right. There is a red tag on your folder which means Chemo is a go. They cannot look at my results, nor can I. Only a nurse can. And? No, cannot see a nurse until I go in since there is a red tag on my binder.

I waited an hour before deciding to go get a bite. They give you a pager. You have to stay in the building. No issues there. There is a Druxy’s in the building. I go down and get a bite. A lovely balanced diet. Fruit bowl with yogurt, and a chocolate bar. Go back up around 11:01. I know that because the admin person asked me where I had been. They paged me at 10:55 for God’s sake. What took so long. I ignored her. The nurse wanted to see me.

They made a mistake. My white blood cell count was down to 0.7. No Chemo was possible. I complained about the admin staff. The nurse suggested I complain to the hospital. She cannot do anything about it.

I was very upset at the waste of time. I could have gone home at 10:05.

I came home and wrote a letter to the customer relations person at the hospital. That conversation coming up in a separate entry.

I came home and rested. My energy came back with a vengeance on Wednesday. I am not sure how to explain my feeling when my energy returns. You feel like the walking dead while the energy is depleted. Very emotional. Cry at anything. You then wake up one morning and your energy has returned. You feel like a new person, almost jumping out of bed. New day, new person. You run around getting things done. Race against time. No rest allowed, too much to do, too little time. There is a poem in there somewhere.

You pay the price at some point when the energy is depleted. You crash and sleep hoping to recharge the batteries so you can start getting things done again. My energy level has lasted so far. Chemo is scheduled for Tuesday again. Neulasta on Thursday. See what happens. I am resting for the next couple of days.

Playing on the computer is resting for me. Hence the blog entries.

Thank you for being there.

Met with the surgeon yesterday. She is still very happy with the rate of progress. No talk of reconnecting the rectum to the colon yet. She is leaving the Toronto General Hospital and going across the street to join Mount Sinai Hospital.  She is taking her patients with her. We are not in the mood to forge new relationships. It turns out that the hospitals, at least in Ontario, are beginning to specialise. The Toronto General Hospital specialises in liver issues including cancer, as well as transplants. They also specialise in a couple of other organs, but I forget what they are.

Mount Sinai specialises in colon cancer amongst other things. This makes it the perfect place for her to practice her trade, and by extensions the perfect place for us to be. All these changes will be taking place starting in May and finishing sometime over the summer. Future emergency visits will be at Mount Sinai as we terminate our relationship with the Toronto General. It also appears that virtually any hospital dealing with cancer is related in some way to the Princess Margaret Hospital. That relationship continues. There is a walkway between Mount Sinai and Princess Margaret. How much closer do you want them to be.

I mentioned to the good doctor that one of the reports we read referred to a rectal stump in my body. What exactly is a rectal stump? It turns out that the tube that goes to my rectum is about 15cm long and is stapled at the top. Goes nowhere. Having said that, it does discharge stuff, and stuff is where we will leave this. It is not stool or anything like that, just stuff. I developed a rash in the rectum area and was curious as to how this could happen, since the rectum is basically inactive. I was told to use the same stuff we use on a baby’s tender derriere, except the heavy duty stuff. Works really well. This may be more than you wish to know. That is what you get for reading this blog.

Met today with the oncologist, Dr. Hedley. Two things came out of today’s meeting. The first is a reaffirmation that my cancer is complicated. No more information than that. It is complicated, and given its nature, will require fine tuning at some points along the way. Considering everything, he was very impressed with my condition. My hair is growing back, I appear to be in good spirits, have put on a bit of weight, all good things.

He has a student from the UK studying with him. He asked if it was OK for the student to spend some time with me while he looked after someone else. No worries. The student asked a lot of questions going to the very beginning of the experience. Even asking such questions as to how we felt when we were told that I had cancer. That was seven or eight months ago. How time flies. I answered most of the questions without any problems. He seemed relieved to get straight answers. I think he was a bit surprised at the nature of the relationship we have with the Doctor and his staff.

Janet just mentioned that she thinks the doctor does not trust me fully. I put on brave face he said today. He is right, but not in front of him. He does not know that of course. He asks Janet for most of his answers. He thinks she will feed him the straight goods. While I am a two faced two bit liar.  Joking. We have a great relationship with the Doctor. I think he is relieved on some level to have a patient who is easy going and in good shape relatively speaking.

I think I will make an appointment to go see my family doctor, just to say howdy-doodee. You all know how much I love her. I have not seen her in 7 months.

I am in great shape right now. In a good mood and feeling very strong. Took a long walk on my way to the hospital. The Neulasta has not kicked in fully yet. I am expecting that to happen tomorrow or Friday at the latest. Everything is progressing as it should. I am also hoping that my general well being will help me withstand the assault that is Neulasta.

That is all for now. All is good. Strong and feeling good.