Baha’is believe in life after death. It comes with its own set of responsibilities. We believe that the body is a vessel for the soul. Effectively a bucket that contains your soul. Once the bucket is full, you kick the bucket, as it were. Different people, different size buckets. This is not a competition to see who can fill up their bucket first. It also helps explain the death of people at different ages.

Baha’is are not allowed to be cremated. We end life by returning to the earth, completing the circle. Our ceremonies are short, except for this one prayer for the dead. It consists of 19 verses that are recited 19 times. Though not considered a holly number, the numbers 9 and 19 appear frequently in the Baha’i faith.

We are exhorted to be detached from all material things. They have such little intrinsic value that we should put our efforts in improving our spirituality as opposed to massing huge amounts of wealths and possessions. Is that Van Gogh really worth millions?

Another virtue we are told to exercise is that of moderation. We are told to use moderation in all things. Including moderation in using moderation. There is a mind bender. There is an issue at this point. Maybe that Van Gogh is worth the millions as opposed to something else I have in my art collection. A moderate price indeed.

I was back in hospital last Wednesday evening with a temperature of 38.5. My temperature was down to normal by the time we got to the emergency room. I knew the answer to the question about whether I was there to see a doctor or not, this time around. I think I also looked a bit sicker than last time we went in. The emergency room was quite busy. I was eventually ushered in. Blood tests were done, cultures raised. I was held in the unit all night. They had to draw more blood at three in the morning for more cultures. All to prove that I was the picture of health, except for the amazing number of metastasized tumours in my lungs.

And therein lies the issue. The lungs are being infected at an alarming rate, with the tumours frolicking hither and tither having the time of their life. I was sent home from the hospital and told to control my temperature fluctuations with Tylenols. Not much the system can do for me at this point.

The trials had failed. I was referred back to Dr. Hedley who is on sick leave waiting for his knee to heal. EMails were sent and an appointment was made to see Dr Hedley on Friday afternoon. Decision time.

I was optimistic. I had assumed that the inflamed liver was due to it fighting the tumours and winning the battle. The hospital visit appeared to make a mockery of that thought, but I held on to my optimism. Dr. Hedley came in on Friday afternoon specially to see me. He gave Janet and I a gigantic hug and we went into a consulting room. Shahnaz, my wonderful nurse was there, as was a student nurse. We had a 90 minute consultation. The decision to be made was the following:

1. Do more Chemo. This is the FULLFOX treatment. Side effects include numbness of the fingers and toes, extreme sensitivity to cold, to the point where you cannot open the fridge door. Ideal for a climate such as Canada’s. There would be a 30% chance of success, which in my case would mean slowing down the growth rate. We would know within three months if it was working and would have to stop the treatments in six months. We would then be back to where we are now.

2. Do nothing and let nature take its course.

The obvious question that came up is what does the status quo mean. How much time do we have. I had to ask since that was the only way we could come to some decision. The answer was quick and shocking. I have two months.

Dr. Hedley was quicker to add that the number is not written in stone, specially given my record. Regardless of its accuracy, the amount of time left is counted in months. What were we expecting. A year, Janet and I said. He shook his head sadly.

There it stands, two to four months.

We are numb. What is there to say. My sense of humour fails me. I have nothing to say. Janet says she does not accept the verdict. She is defiant. But there is little left to say.

I have spent the last few days letting people know. Tears have flooded involuntarily. We are all sad, living in a surreal existence trying to make sense of this. Two months is such a short time. This is October, then November, then December and the end. Maybe. Still too close for any level of comfort.

We are about to start doing the practical stuff. Transfer all the accounts to Janet’s name. Complete a power of attorney.  Put together a living will? Make sure we have people to look after the house for Janet. The furnace repair man, the contractor, the computer technicians. We are making a list tomorrow. Janet is taking time off work so we can spend more time together. It is all so mundane, and yet I feel fortunate that we have the time to do these things.

I have stopped day dreaming. Seems little point to it after all. What will my kitchen look like? My garden?  The thoughts are barely in my head before the streaming stops. Almost as if my computer has frozen requiring a reboot. I have trouble sleeping at night. I lay awake often to two in the morning until exhaustion takes its toll. Is that becomes dreams are now harder to come by? What is there to dream about? I have no idea what the after life looks like.

Will I see my parents again? Will there be a welcoming committee? Bunch of girls in hula dresses dancing and draping flowers around my neck? OK, so I watch too many movies. Will I see old friends, like Judy Elder? I imagine the after life as a continuum into eternity. A progression of the soul as it moves through the ether. The evil ones start lower while the saintly ones have the advantage o starting on a higher plane. I figure I am somewhere in the middle. I will be happy as long as I can Gandhi and not Hitler.

We have also started planning for the final days. We have an appointment with palliative for November 9. An appointment with the funeral home on Tuesday. The strangest part of all this is that I am basically healthy and sound in great spirits. I called the funeral home. Has the person died yet? No, I am working on it. Everyone is amazed that I am still laughing and joking. I figure these are my final days. I would like people to remember me with joy on my face rather than sadness.

My mother spent the last three weeks of her life in hospital. She was not in very good shape. I spent a couple of hours with her on what turned out to be her last night. We had always been very close, except during her cancer period. She turned to Fetneh to look after her. The last night was very precious to me. I showed up at hospital around midnight. Those were the days of lax security. We talked a lot. She had made sure that no one would be allowed to see her in the last three weeks. She said the way she looks is not the way she wanted to be remembered. She died the next morning. I remember looking art her body lying in peace, finally and thinking she is indeed dead. The soul has left.  That last memory has remained with me for the past 31 years. She was right. Remember us with the passion we had when were in good shape, not as we lie in pain in hospital.

We are going to Atlanta next weekend. Leaving on Friday, returning on Monday. It has to be short. We cannot take the chance of something going wrong while in the U.S..  We have been told that things could go from right to wrong in seconds. I believe it. I wake up sometimes, not feeling quite up to snuff. I return to bed to recover my strength. This morning was one of those mornings. I seem to be fine now. Nothing like a bunch of steroids and Tylenols to perk you up. The steroids open the lung channels, and the Tylenol deals with the pain. Miracle workers between them.

We are staying in a hotel in Atlanta. More privacy. Devin is coming down from New York, and Fetneh is joining us from Montreal. My family is planning on spending a lot of time with me over the next little while. Fo’ad has cleared his schedule and intends on coming up to Toronto to spend a week at my place. Our hotel is opening its doors again.

The whole situation is surreal. I will keep saying that. There is not other way of looking at it. You talk about your own imminent death. What kind of conversation is that to have? Defies sanity. Everyone keeps asking what they can do for me. The only thing left is to enjoy each other’s company. Talk, laugh, have a good time. Nothing else matters.

I am planning to have a plain casket, made from pine. I am told that these are available. I would like a stamp placed on top that says: Property of God. The style will be along the type that was used in raiders of the Lost Ark. I am not going to have a guest book. We will instead have markers of different colours available so people can sign the casket. I can have your names with me for the next part of my journey. That will also save Janet from having to send thank you notes to everyone. Consider yourselves thanked.

This has been a very difficult entry to make.  We received the news last Friday. I have had this open on my computer for a week now trying to find the right words and cadence.

I thank you for being there. For listening, crying and laughing. Hopefully more of the latter.

Janet and I will be married for 30 years this coming August.

Life has not been without its ups and downs. No marriage is without, let alone one that has lasted this many years.

Good times are followed by bad, arguments, fights, misunderstandings, compromise resulting in better times. All along you wonder why you are still together. You take each other for granted, get caught up in life’s foibles. Wake up and find each other all over again.

Theories abound that women choose their mates. Men may do the proposal on bended knee. That is just submitting to the inevitable. Women appear to see something in their mate that he is ignorant to. It appears in fact that men are ignorant to a whole bunch of stuff and stay that way for what seems like forever.

Men see the house of their dreams only to be set straight by their wives. Lovely house, kitchen too small. Oh right. How about this house, beauty eh? Living room is the wrong size. Oh yeah. How about this? Do you think this is right?  The seeds of doubt have been established. Or have they. Is this not just reality setting in? I am not being a cynic. Women make most of the important decisions.

The husband sees the house. Small kitchen? Nah. Just an opportunity to renovate. Rip out the old one and put in new cupboards. What fun. The ripping out is fun, only to realise that the rebuilding skills may be lacking, just slightly. IKEA may have to come to the rescue. She waits patiently for the project to finish. The power of the woman is that she has already seen the future and stalled the project before it had a chance to forge ahead and lead to further problems.

Contractors hate to finish projects started by others, even when the other is the husband.

We are going to celebrate our anniversary in New York this year. Devin is moving to New York to pursue a Masters degree at the New School. Subject is Change Management. Don’s ask. Still trying to figure it out. Seems like the new buzz word. Everything is changing. We someone with skills to manage these changes. He will have fun in New York. We have lots of friends and family there, all of whom have volunteered space and help and assistance of all kinds. He will not be sleeping in the streets any time soon. Devin had to borrow money from the bank to pay for all this. Loans co-signed by Janet. I would have gladly co-signed. The bank was being fussy about longevity of life and revenue sources.

I am tickled pink for him. To say nothing of how tickled pink he is for himself. Another expression with dubious sources. Why are we tickled pink? Why is that a good thing? He will be moving on August 21. We are all flying down with him, probably spending the week there which will include our anniversary on August 24.

I am not sure if I have written about our wedding. It was a wonderful affair set in the scenic resort of Esterelle in Quebec. We were young and broke and decided to plan the whole thing by ourselves. Fetneh assisted whenever she was allowed. The L’Esterelle resort is about an hour from Montreal.

It was a very rainy summer. Rained virtually every weekend. The weekend of our weekend was sunny, only to rain the weekend after. Lucky us. The banquet hall we had rented was built over the lake. Very scenic and beautiful. Made for great photo ops, which Fo’ad was more than happy to oblige us with. He mentioned later that he would never do that again. Could not enjoy the wedding and take pictures at the same time. Fo’ad is a great photographer. I have no idea where his collection of pictures and slides are these days.

We had booked another banquet hall, but they rented it out to someone else three weeks before our wedding. We were not fast enough with our deposit cheque. We scrambled like mad to find the resort which turned to be much better and nicer.

Invitations were sent out. About 75 people attended. My father came home from Nigeria where he was working. It was a surprise since he had shown no motivation to come. The Baha’i Faith requires us to obtain the permission of our parents before we get married. My father gave his consent, as did my mother-in-law, Maryse. My father-in-law, Morris was more reticent. Could we not live together first to see how things work out? Surely that would be more prudent. We persevered and eventually received his consent.

The Baha’i marriage ceremony was not accepted by the Quebec government in those days. We had a civil marriage at City Hall in the morning. We were quite giddy, had not slept in days. It was a short and uneventful ceremony except for our occasional giggles and fits of laughter. We went out for breakfast with our witnesses and friends, Ginny and Bryan. They are still together as well, and have moved to Toronto.

The civil and Baha’i weddings had to take place within the same day. The Baha’i day starts at 6:00PM. There was not much time to waste even though 6:00PM seemed like an eternity away. We had spent some time the previous day putting out signs along the byroads of leading to L’Esterelle pointing drivers in the right direction. The storm that followed blew away the signs.

We finally made it up to L’Esterelle around 2PM. Some people had already arrived just to make sure they were not going to get lost. Others got lost along the way, including my mother in law who was the DJ. She had a DJ company at the time called the Pink Ladies. She was quite good at it. I dressed very quickly and went out to make sure one of us to greet the guests. Janet was making herself all the prettier. Fetneh was doing the make up and hair primping.

I stood in the banquet hall greeting guests. The room had been set up with a head table. No, no, no. No head table. We are an egalitarian democratic bunch. The table was quickly removed by the very accommodating staff and the room re-arranged a bit. The flowers arrived late and were quickly set on the tables. Marys finally showed up and set up her equipment. I was in a bit of a daze. Janet had not shown up yet.

The Maitre D shows up at my elbow. This would be a good time to server hors d’oeuvres, no? I look at him in a daze and nod. Sure. It is now about 4:00PM. The hors d’oeuvres make their rounds. About half an hour later, the familiar whisper of the Maitre D appears in my ear. Good time to serve drinks, no? Sure, why not. I had no idea what was keeping Janet. 6:00PM was around the corner. I did not dare leave the room as the guests were milling about talking. Everyone seemed happy. No one was asking any questions about, what was to me, the obvious delays in getting thing going.

Janet showed up at 5:30 and the ceremony started. Lucky for us, the Baha’i ceremony is short. We can make it longer by adding our own words. The ceremony was complete before 6:00PM. Oh, joy, oh bliss.

Diana sang a couple of songs for us, others said some things. Don’t remember any more. It was time to eat.

We had a buffet dinner. All set up for the bride and groom to proceed. We arrived at the table to find all kinds of stuff we had nor ordered. Seafood galore, to say nothing of the magnificent ice sculpture that adorned the center of the table. Janet and I looked at each other. We can’t afford this. We never ordered any of this. The whisper comes to my ear, don’t worry, there was a wedding upstairs, these are their left overs, no sense in letting go to waste.

We ate first and used the rest of the dinner time to move around the room, greeting everyone making sure all was good. We danced the night away and finally crashed. I do not know what others do on their wedding night, we slept the sleep of the dead, grateful it was all over.

We stayed at L’Esterelle for a couple of days. Much needed rest and sleep.

The best part of the whole event was how impressed people were with the organization of the whole thing. It all went so smoothly. I have to thank the banquet whisperer for that.

Here we are thirty years later. Still together with a magnificent son who lights up our lives every day. Things are looking up in spite of the obvious.

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.

© 2010 I Have Cancer Suffusion theme by Sayontan Sinha