I took public transit to the hospital. Janet and Devin are both working. This is really a non-issue. The streetcar is almost at our door. Very convenient. Arrived a bit early, taken in on time and released right on schedule. Another new nurse. Again, very official. Name, number and date of birth, over and over again.

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.

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.

How exciting is that? The Montreal Canadians were not supposed to even be in the playoffs, and here they are in a Game Seven against the best team in the league. Just goes to show how much passion and want play in overcoming challenges.

And so it goes with me. I have to use these people as inspiration. For inspiration is what drives us to excel, overcome trials and tribulations. We move from one day to the next, oblivious to what is around the corner. Almost as if in a daze, but not quite. Some more aware than others. We move in a dance with time, rarely challenged to rise above. Always making sure we survive to see another day.

A chronic conditions is supposed to serve as a wake up call. A call to action. Get up, do something, create a legacy, you do not have much time left. Not that we know exactly how much there is in the trough of life. The pressure is there nonetheless.

The problem is that while the pressure is there, the energy is lacking. Everyday brings a new adventure, a new discovery. We moved up the chemo day to free up the weekends. Two fewer days to recover from the previous chemo session. We figure that is why I am so tired. I cannot help but feel there’s more to it than that. Just two fewer days cannot result in this level of exhaustion. I mentioned in one of my previous posts how cheated I feel when my good days do not turn out as planned. This week is turning into one of those. I should not complain. I am getting a lot done in spite of everything. Just that I need to rest every so often, too often, to recoup some level of energy.

I watched the whole hockey game last night. That was a major feat. Not that I go to sleep early, just go to bed early to get away from the noise and hustle and bustle of life, such as it is. Last night was different. The Canadiens had lost a previous game when they had led 4-1 going into the third period. Here they were leading 3-0 and only 10 long minutes left in the game. They won, glory be. I love the playoffs. Such a do or die scenario. The level of the game rises to new heights, or lows if you happen to be the Washington Capitals.

Exhaustion be damned. Watch the whole thing and pay the price for it in the morning.

This too shall pass. Another week will come and the energy will be restored. Nothing to do with hospitals this week. Chemo next Tuesday.

We are going out of town this weekend. To a farm generously lent us by Heather and Neil Fraser. This will be the first out of town trip in 11 months. I am excited beyond description. Does not matter what happens. Exhausted or fine, just getting out of town is going to be amazing. I am planning all kinds of things to do there, including, of course, taking pictures. See where that goes.

The Frasers rent some of the farm to a local farmer who has some cows. Cows have calves. calves get eaten by coyotes. The calves are kept indoors to prevent that. Look forward to seeing the calves. Would love to get a picture of a coyote. We will see what dusk brings.

Thanks for listening.

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.

I have been neglectful, as Sharon has so kindly pointed out. Last Thursday was not a good day. As I have said many time, not sure why some days go good and others fail to impress. Devin and I went shopping at the St Lawrence Market. We were out of fruit which means I have [...]

The full import of the situation is slowly settling in. Hard to avoid the issue now that you have a shit-bag connected to your stomach. The word useless asshole has taken on a whole new meaning. A colostomy bag is front and centre on my stomach, a sure sign of a changed way of life. [...]

© 2010 I Have Cancer Suffusion theme by Sayontan Sinha