We finally made it the One of Kind Show. I was exhausted for some reason, woke up in the afternoon and insisted we go. Let us not miss this opportunity. We got there, rented and electric scooter and rolled inside. The scooter was the best thing we did. I even took my oxygen tank to emphasize the point.  We lasted about 2.5 hours at the show, then made our way home.

I was amazes at the rudeness of people regarding the use of the scooter. Some cut you off, others made comments just loud enough for you to hear, others did not get out of the way. All very interesting, and unnecessary. To make matters worse, it was a terrible show. I was standing in front of a painting at one point when another vendor showed up and the started talking about this that and another including the show itself. I stayed there for quite a while admiring the painting, but no one came to ask me if I wanted to buy it. I was not about to get out of my chair. Not the easiest thing to do. I left.

I have been knocked out for the couple of days. The doctors have reassured Janet that the show is the reason. I am eating well, and drinking not bad. One does not go from eating to dead overnight. Janet woke me up this afternoon to eat. It was very difficult for me to even open my eyes. Same thing this evening. Come down for dinner. Could barely open my eyes, so stayed in bed. Could have easily stayed asleep all night.

I woke up around 11:30, suddenly awake and lots of energy. Janet decided I should take advantage of the energy to update the blog since so many people are concerned by the lack of communication.

I must say it is a very strange feeling that I am going through. Quite scary on one level, well, on any level you can possibly imagine. Not sure where any of it is going. Janet keeps asking me what is going on. The simple answer is I am dying and all the thoughts and tribulations that go along with that. Sounds like a simple process, but get complicated really fast, and really does not explain everything. Is this a waiting game? Wake up in the morning and just sit around and wait to see what happens?

After my exceptionally brilliant piece on people visiting me, we are are finding ourselves cancelling visits. Cannot handle the conversation. We have at the very least, curtailed visits, limiting them to something we think we can handle. All very confusing to us, let alone to those wishing to grace us with the presence.

The blog is helping a lot with thinking through things. I have a visit with my psychiatrist this Friday, see how that goes. I am looking forward to it. There are a number of thoughts going through my head that are linked to the legacy post which I have promised and yet to deliver. It is coming, I promise. Have to get the thoughts in order. getting more complicated as we move forward.

The blog is getting very big, and we are running into technical issued. You may find it down sometimes. The techs are doing their best to keep it up and running. I am also trying to find a podcast from a CBC interview that talks about the fact that we shuld be preventing cancer, and not cure it since there is not cure for it. I have mentioned that many time before, but he has accreditations behind his name which makes him an authority so we have to listen to him. Yeah for accreditations.

All this to say I appear to be good. Blood pressure where it should be, blood counts where thy aught to be. We will get past this exhaustion thing as well. We are also going to try and get a handicap sticker for the car. I guess we can use the oxygen as the excuse. It will be good to have one. You get access to all the handicap parking spots, and can park just about anywhere you want. I am not driving any more. Do not trust the reflexes. I may also not be able to lift my feet to reach the brake pedals fast enough. Janet can take advantage of it.

All for now.  Good night.

I started spending more and more time in bed. Wake up in the morning, have breakfast, maybe drive Janet to work. Shop for food a bit, then come home and collapse in bed. Sleep from ten in the morning to around two in the afternoon. I thought at times I was not eating enough, or drinking enough water. Increased both those. Got hit by bouts of nausea. Took pills for that.

Fetneh kept insisting I go for acupuncture to increase my energy levels. I kept promising to go, then forget the promise made. Almost as if I did not have the energy to go for the one thing that might just increase my energy.

No one was very happy about this. Janet had to almost accept reality. She could not do anything about it. Kept encouraging them to get on with things. Make a plan, everyone said. Set up a routine and do it. It does not have to be complicated. Just start doing things. I am doing things, I am sleeping. You can bet that put a smile on their faces.

I took my daily sleep last Friday. I had the shivers while lying under the winter comforter. We are in fall mode, nowhere near winter. I should not be cold. I closed all the windows. Still had the shivers. They kept waking me up. I finally roused myself around three in the afternoon. I was hungry. A man has to have his priorities. I was also in pain.

Oh yeah the pain. I have started having these pains along the bottom of my rib cage. It turns out they are due to an inflamed liver. Could be a good thing or not depending on whether the tumours are getting bigger (bad) or smaller (good!). Tylenol 1s take care of the pain rather nicely thank you very much. I pop a couple of those, get dressed and make my way tot he kitchen. I am still shivering.

I am out of breath by the time I get down there. I may have neglected that part of the narrative. I have running out breath a lot as well. Say a couple of words and take a few breaths. It comes and goes. There does not appear to be rhyme or reason for the effects.

I get myself something to eat and am still shivering. I am so dense these days. It suddenly occurs to me that I may have a temperature. I go back upstairs to get the thermometer. We have one of those units that you stick in the ear. It responds in seconds. I register 38.5C. I am supposed to go to hospital hen I hit 38. I decide this is an anomaly. The T1s will take care of it anyways. My temperature goes down as the day progresses, hitting almost 37, An anomaly it may have been.

Janet is in New York on business and to see Devin. She left n Thursday morning. She has arranged, or the friends arranged to come look after me. Diana is coming to feed me on Friday night, and Nancy is doing the honours on Saturday. I have been cooking up a storm of late and find this very amusing. Given my level of fatigue, breathlessness, and fever, the rescue is very welcome.

Diana, Andrew and Leona being dinner over. I love teasing her kids. They are extremely bright and rise to the occasion brilliantly, not shy to defend themselves under my relentless attacks. Diana does not have to step in to defend them. They do an admirable job. They also take the teasing in the spirit it is intended in. We have a good time. Andrew wants advice on what sort of computer to by. He wants something zippy, fast, a computer that will almost read his thoughts. Come on instantly. Oh Andrew, good luck with that. Speed is so relative to your experiences.

I am obviously done for, and they take their leave. Leslie has come home to keep me company. I feel bad, because I am headed straight to bed. She is not to be deterred from her objective and insists on staying home.

Saturday morning sees me with a temperature of 37.8. Sigh of relief. A couple of T1s will, and do take care of that. I go to the market but do have the energy to walk around. I come home, and go to bed. This is getting ridiculous. Wake up a lot later and start doing stuff. Pain, breathless, getting really frustrated. I have a telephone conversation with Janet. She is having a fine time. Devin is doing well, having a good time at The New School.

Nancy calls to confer about dinner. Pasta it is. I have cut down on my eating. Severely cut down to avoid stomach aches. She will cook it when she gets here. I take my temperature. Yikes, I am back at 38.5. Nancy will take me to hospital after dinner. Nothing worse than going to emergency on an empty stomach. They do not have decent food there. We eat, with Leslie coming home and joining us. She stays behind to clean up. Nancy and I drive to the hospital. She drives, I go along for the ride.

I bring all my pills with me. I have one Chemo pill that I have to take at 8AM and 8PM on Fridays and Saturdays. We arrive at the hospital at 8:00PM. Walk up to the triage nurse. She is a bit brusque. Are you here to see a doctor. I am a bit confused by the question. Not sure what my options are. Stammer something like, I guess, maybe, sure. She is getting impatient. Are you here to see doctor or a patient. Clarification. Oh a doctor for sure. I look at Nancy. I don’t look sick enough. She seems to think I am healthy.

I take a seat next tot he nurse and start answering her questions. She takes my vitals. My temperature has not budged. So I am sick. She is much calmer now and processes me. Nancy and I sit in the waiting room. We are barely settled when I get called in to register. I am also told it is safe to take my pills. I take the pills, register, get my wrist band to make sure everyone knows I am a genuine sick person. We settle again in the waiting room. There are maybe half a dozen people ahead of us. Not bad for a major downtown hospital on a Saturday night. Should not be that long of a wait. We are called in almost immediately. Nancy is impressed. I make sure she comes in with me. Nothing she has not seen or talked about.

We are ushered into a private room just beside the nurses station. I like hearing the action and conversations. There is nothing worse than being secluded while in emergency, you feel as if they have forgotten about you. They come and do blood work, request some urine. Nothing unusual. They are prompt and friendly and young, so young, and very pretty. As Judy said, I am not that sick. Dr. Quinn comes in to talk to us. They will do a CT-Scan of the lungs, ultrasound of the heart to make sure there is no water around it, more blood work. The original blood work has come in negative indicating there are no infections. They took blood from my Port-a-Cath. They want to take some more from my veins to make sure the Port-a-Cath is not infected.

Nurse comes in with two very large vials to get more blood from me. They assure me I have enough. She pokes me and takes her samples. They will be used to grow cultures in the lab to make sure I am truly free from infections. There are a lot of people with colds around us. The doctor comes back. The CT-Scan machine is not working. They will take a chest X-Ray instead, looking for signs of pneumonia or other items obstructing the lungs. They still want to do the Scan which will find things that the X-Ray machine cannot see, such as small blood clots that may have made their way into the lung. They do not think there are any since I am taking a blood thinner, but I am a critical case and they are not willing to take any chances.

Everything happens pretty quickly. By midnight, they have decided I should stay in the hospital for observations. The X-Rays show a number of metastasized cancer cells in both lungs. From what the doctor says, I am guessing more than before. I thinks her words were there are a lot of mets in your lungs. Nothing else though which is both good and bad. Good which means I am free from infections, bad because they have to keep me to do a Scan during the day.

Another doctor, Dr. Kimberly Bremmer comes to visit. Internal medicine. She will look after me during my hospital stay. The general consensus appears to be that the Scan will also reveal nothing. They feel that all the symptoms I am showing are a result of the cancer getting worse. The information leaves me a bit numb. Nancy and I hold hands.

I am in a room by 2:00AM. A semi-private room was all that was available, and no room mate. Time are tough. Leigh and Sascha are out on the town and decide to join me. Am I able to take visitors at that time of night. Sure says the nurse. They get there by 2:30 and spend an hour with me. I have to kick them out. This is just slightly past my bed time of 9:00PM.

Dr. Bremmer visits me in the morning. She is with a retinue of interns and a more senior Doctor. They are all very serious. VERY SERIOUS. No smiles from anyone, except Dr. Bremmer. They go over my situation.  Sunday will be a day of rest and observation. The Scan will take place on Monday. Cannot see the future beyond that.

Nancy and I spent the night texting with Janet, Leslie, Fetneh, and Judith. It was almost comical. Hospitals have given up trying to stop us from using our cell phones. Sunday morning saw more of the same, adding emails to the mix as everyone was kept in the loop about what is going on. My fingers were getting sore. Nancy came back to keep me company and also to bring me my phone charger. Janet was on her way back from New York and would be at the hospital around 2PM. Nancy had to leave by lunch time to take Lilly (her daughter) to her riding lessons.

David Jang dropped in to keep me company. Janet finally showed up, as did Diana, and Leslie of course. The traffic of eMails and texting finally came to a halt. It seemed so quiet all of a sudden. I sent Janet and Leslie home around 7. Janet is not feeling well and could use the rest. I was going to sleep anyways. David left around 6. None of us wanted to discuss the worse case scenario.

I had to stay awake till 9:PM. The nurses had to come around and make note of our vital signs.  No temperature, pressure OK. No surprises. My nurse is very charming and we have a long chat about things in general. She leaves, I close the door and try to sleep. Did not have to try very hard. The bed is very uncomfortable, but it matters little as I drift in and out of sleep.

Mount Sinai hospital where I was, is attached to the Princess Margaret Hospital. They all have access to patient files at each other’s establishments. The doctors at emergency and at the hospital were fully up to date with my condition. I was very impressed with their service, professionalism, and general conduct. I was disappointed by their food. Hospitals can surely do better. We are all told about the dangers of proceed foods, and yet are being fed stuff like Rice Krispies and 1% milk as part of a healthy diet. There is something seriously amiss here.

The Scan takes place on Monday morning. The results are in by 2PM. As I keep telling people, I would be a healthy person if it wasn’t for that small matter of having cancer. I am free of infection, blood is clean, lungs are clean, heart is healthy, all organs are functioning properly. Except for the mets. that are having a jolly party.

The title of this entry is Not Enough Words. We are all a bit numb at the news and are not sure what to make of it all. Do I have still have two years in me? More? Less? Janet and I have decided it is time to make some plans. Decide what we want to do and do it.

My father died in a rather ferocious car accident in 1999. The doctors at the hospital reassured us by saying that he did not suffer, that the brain shuts down in the face of huge adversity. So it is with us. There are no thoughts going through my head. The brain shuts down. Every once in a while you wake up and go, oh yeah, I have to think about this, and the brain shuts down again.

There are not enough words to describe what we are going through. Me, my family, my amazing friends who have rallied around me seemingly oblivious to my obvious shortcomings.

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

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

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

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

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

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

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

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

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

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

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

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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.

Then came the cold. Started on Thursday last, came into full force on Friday relaying me to the bed on a continual basis. Temperatures fluctuating wildly between normal at C36.5 right up to C38.2 (F100.7 at its zenith). This went on for days until Janet insisted we go to emergency. Fo’ad was here for the week, I had all kinds of plans for us, all for naught. He and Barbara kept themselves busy while I lay on the couch pretending to be alive.

The emergency staff put us in isolation. They wore the yellow gowns and gloves and masks. I felt pretty safe from whatever disease they might have been carrying. Blood was taken, vitals signs taken twice, once in triage which showed my temperature to be normal, the second one showing some level of temperature. A chest X Ray was also de rigueur, just to make sure there was nothing in there, since they seemed to hear some sort of stuff lurking in the interior.

The blood came back clean with a high white blood cell count. Thank you Neulasta. The chest X Rays came back clean as a whistle.  I have never quite figured out why we consider whistles to be so clean after spending time collecting the spit of the blower. But there you go, lungs were clean. 3.5 hours later we are headed home. Viral infection. Drink lots of liquids. Call your oncologist tomorrow.

Did I forget to mention that their computers were down? All night. Everything had to be done the old fashioned way, paper, phones, conversations. Hence the 3.5 hours.

I felt very bad for my brother who had driven all the way here only to find me in a state of total bed riddeness. He fellt bad that I felt bad, and the circle continues.

Fetneh also came by and stayed overnight. Had a wonderful time with her, as always.

I left a message for Dr. Hedley who called to get a picture of the situation. Chemo was a go as far as he was concerned. The major part of the cold should be over by Thursday.

Fo’ad and Barbara left on Wednesday. No sense in sticking around with the sicko. They had planned to return on Wednesday all along. Fo’ad had mentioned the possibility of stayin an extra day, if it would make a difference. Did not seem to make any sense. Off they go.

I woke up Thursday morning as if the previous few days had never happened. No temperature, slight cough, full of energy. Bring on the chemo.

As you might guess, chemo has become very routine. Walked in all alone. Janet came to pick me up at the end. I watched the nurses going to and fro at a brisk pace smiling and cheering the patients along. Have I mentioned how wonderful these nurses are? Truly amazing.

We went out for dinner last night, for no other reason than to get me out of the house. I went to the market in the morning. Came home and went straight to bed. The night out was welcome.

C’est tout pour cette semaine. A bientot.