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

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

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

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

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

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

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

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

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

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

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

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

Time to see the psychologist.

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

Take a couple of months off to reassess the situation.

Ponder the meaning of life.

Start working on all my projects.

Keep away from the routine of the hospital.

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

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

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

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

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

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

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

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 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.

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.

The nurse showed up as promised. I had the pleasure of seeing Natalie again. Unplugged in no time. No fuss no muss as they say, though again I have no idea where the expression originates from. Muss is defined in the dictionary as: a state of disorder; muddle. I guess that would explain the expression, but who comes up with these?

The fatigue that set after the chemo is a whole other story. Janet tells me it is normal. I doubt it. I was virtually in bed for what seemed like forever. I would run one errand and retire to recover. I was finally out of bed and doing things on Thursday. What a relief. Kali joined me for coffee on Friday. We got to sit in the park.

A fabulous coffee house has opened around the corner from our house called The Rooster. Great coffee, lovely people and always packed. We bought our stuff and went across the street to enjoy the food, company and conversation. Kali is very well informed about the stuff Ronak Shah is talking about. Made for an interesting afternoon. Maybe once I have digested the information, I will talk about it a bit more. Fetneh also had an opinion. Makes for an interesting conversation.

Friday evening saw us in emergency at the Toronto General Hospital.

I am beginning to think it to be futile to imagine for a second that a normal existence of any kind is possible. Just as you start to relax and start a routine, something falls apart. In this case, I started experience a lot of discomfort in the stomach area to the right of the stoma. This was accompanied by a full day of no activity from the stomach. A bit disconcerting.

A doctor named Hodges looked after us. He actually had the temerity to read my chart and remember what he had read. He was very comforting and well informed about the situation. We did an stomach Xray to see if there was anything blocking the passage. Turns out that blockage of the passage is a definite possibility following operations such as mine. Not just now but essentially for ever. I keep hearing the for ever mantra over and over again. Have to start paying more attention, and come to some sort of understanding of “for ever”.

No obstruction, just stool being stubborn. Lost their way and are hunkering down for the long haul. Nothing some industrial strength Drano would not solve. I was prescribed something called Lactulose, which is over the counter. I have to take 2 tablespoons of this stuff up to four times a day. Makes ExLAx look like a glass of water. My bag floweth over. No really. Literally. Damn thing blew apart spilling its vile content. All I could do was make my way to the washroom to clean things up trying to contain the spillover. Life is nothing short of exciting. The only question I have is when do you know the system is back to normal? I guess I have to wait and see if the stomach pains return or not.

I was very upset yesterday. Mad as hell. How dare my body betray me like this? This is my one good week. The least it could is let me enjoy it. I now have to be careful for  a few days waiting for this to pass.

One more item to add to our list of stuff to watch out for.

And one more: The skin around the stoma has turned black. Not sure if it is because of the trauma it is going through or something to be really worried about. I have written to the wonderful Dr Kennedy, my surgeon for clarification. I am going to see her next Tuesday anyways. It would be nice to have some sort of clarification before that.

I have been in great spirits until yesterday, when my bag did the spilling over scene. Yesterday was not a good day, spiritually, nor physically, I guess.

Today is already better. Gita is supposed to join me for coffee. I might go to her place just for a change of scenery.