Janet and I had a bunch of question for Dr. Hedley. They cantered primarily around the need to continue the Chemo Sessions if they were no longer effective. What were the repercussions of taking a Chemo Vacation at this point, or at the end of August as he was planning> Taking a vacation now would allow us to enjoy the summer.

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.

Every once in a while a glitch appears in the system. A time space continuum as they would say in Star Trek. Never quite figured out what that meant. Sounds amazing though.

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.

All things become normal after a while. Repeat something often enough and you begin to believe it. So it goes with Chemo.

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.

Chemo on May 4th was postponed by about a week. My white blood cell count was very low at 0.8. Janet was right on the weekend. Dr. Hedley recommended I do another blood test on Tuesday morning. These things are pretty fluid. The counts go up and down with great regularity.

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.

Back to chemo daycare after an extra week off to celebrate the Baha’i New Year. That was on March 25. A very uneventful day as all visits to the Chemo Daycare unit are turning into.

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.

This was a good week overall. A bit of trepidation getting mentally ready for the chemo session. Not sure why there is any trepidation. This has become an almost routine event. Janet had to work this week, and Devin had to go to his piano lesson. I drove to the hospital for the 10:00AM appointment. [...]

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