I wrote Andrew Neelands the other day chastising him for not visiting me over the past year. I have know Andrew for many years. He is one of the smartest geeks out there, along with Richard Smith and Marc Jairam. Our conversations range all over the place. Sometimes getting awfully complicated to me, though simple for them.

Andrew and I were talking about the new normal which I have mentioned in the past. The concept of moving upper and lower bars of moderation came up in the same breath. Ah yes, he says, moving the calculus zero. Yeah, right. Think about it. Stop thinking as soon as your eyes glaze over.

I have mentioned many times that I look forward to being visited by everyone. It is one of the few pleasures left. All we have after all is said and done is the pleasure of each others company. I still hear that people are reticent to come forward. They are afraid of invading my privacy, of inconveniencing me. At the root of it all, I am guessing, is that people are unsure of what will happen if they do visit. What to say? How to behave? What is appropriate?

I wrote Andrew to tell him to get his scrawny ass over here. I wrote Richard to let him know that he has not seen me in too long while. He is also in possession of Season 5 and 6 of my Buffy CDs and I want them back. I can get away with this kind of talk with them. These are long standing friendships. No surprise when both came through.

To the rest of you I say this. Write or call the morning you want to visit to make sure I am up to it. I am not shy (have I ever been?) to let you know if it is not a good day. Things change sometimes between the phone call and the drop in. Kali was here the other day. She called ahead, is it OK? Yep, I says, come on over. I was asleep by the time she got here. Things were not so good. Could not open my eyes. I would hear snippets of conversation when I mustered up the strength to wake up a bit. And that is also fine. I lost my strength. Normal these days.

The conversation gets easier with more visits. I look great. Really do. Everyone is always surprised when they see me. This who see me more regularly discern between the better and not so better days. Others look at me with a bit of a puzzled look. You can almost hear the unasked question, really dying? You just don’t look it.

The situation is surreal. Say it, and say it again. We do all day. Often followed by it sucks. And so it does. We know it, you know it. Let us not waste time with political correctness and the usual decorum that accompanies visits and such activities.

Do not worry about bringing anything. Tea is always ready.

Visit, or I may have to subject you to a scrawny ass eMail.

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.

Cancer creates such wonderful opportunities. Bi-weekly visits to the Chemo Daycare, the side effects of all the treatments, the incredible amount of information you have to sift through to get the an inkling of what to expect.

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.

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.

We had a central air conditioner installed this past weekend. Our furnace died about three years ago. It was a year of failures. We were having a Christmas party at our house. Lots of people generating lots of body heat. No one noticed that the furnaced had ceased functioning. I was not too concerned as long as there were people to heat up the house.

People left. Damn. I had to tell Janet. She would have figured it out anyways. We live in a 100 year old house. There is no insulation in the walls, except on the third floor which we renovated when we bought the house. The temperature started dropping slowly overnight. Winter decided to rear its ugly head with one of the coldest weeks of the season. Diana lent us a space heater which was moved from room to room. The fireplace helped a bit, though fireplaces tend to draw heat out of the house.

We found this guy name Amit who owns a company called NASA Heat and Air Conditioning. I have no idea what NASA has to do with it, and how he gets away with using that name. The furnace was installed within the week restoring heat to a very beleaguered family.

Janet decided that this was the year we would install air conditioning. I am not a big fan of these things. They suck power and give you colds. People tend to keep the temperatures way too low causing a shock the system when you go outdoors. We have promised ourselves to avoid those issues.

We have just had a heat wave in Toronto. Daily temperatures in the low C30′s. The problem has been though, that night temperatures have not dropped making the situation far worse than the daily highs would indicate. The city kept issuing heat alert advising anyone with a chronic condition to stay indoors. That is me this year. We sprung for the AC.

Amit tells us that we may be disappointed with the effect of the AC on the third floor where our bedroom is. Old house, old vents badly installed. We are lucky. The third floor is cooled down sufficiently for us to sleep in peace. We open the windows which might defeat the purpose of the AC. We like open windows in the summer. So much more pleasant to sleep that way. Heat rises, and we are on the third floor. The open windows should not affect the AC any.

We have set the thermostat at C25. We will monitor things and see what the best temperature is for our comfort.

Amit warned us to not react to the heat with a keen jerk reaction. The heat will pass. We have lived in this house for 11 years without AC, why now? The house tends to heat up toward the middle of July. We have fans everywhere to cool us down. We suffer through the months of July and August before things cool down in preparation for the coming winter. So why now, Amit wants to know.

We tell him about the cancer and the need to pacify the chronic sufferer. We have this conversation on Thursday afternoon. The AC is installed on Saturday. He would have installed it on Friday, except it rained making it impossible to do any work. He is a charming and accommodating man.

The installation is done in about four hours, as promised. We sit and chat for a short while. He tells me I should look up Swami Ram Dev who teaches people breathing exercises that have produced miracle results. Do I speak Hindi? The good Swami has a show on television. Among the many languages I speak, Hindi is not one of the preferred. Look him up on the web. He is amazing.

My car wash guy wants to know how I am. Now my furnace and AC guy is trying to help me as best he can. How amazing is this world and the people within it.

I have said this before, and I will say it again. The support from all sides has been amazing. The sources of the support have been amazing as well.

I went to get the car washed the other day. Let me know if I have told this story before. This is one of those drive though joints with surly men who dry your car at the exit. You have to get out of the car and the chain mechanism in the ground drags your car through the wash. Our Mazda 3 has windshield wipers that react to water on the windshield. They come when it starts to rain and turn off by themselves. Wonderful technology. I have to always remember to switch them off.

I got out of the car. Somehow the seatbelt caught my colostomy bag and ripped it off. Needless to say, a mess, on my hands, my shirt, my pants. Pretty much everywhere. There is guy who guides you to drive the car to the chains. He also sprays the car to loosen the grime in preparation for the wash. I am always amused that they only spray the drives side. The passenger side obviously does not get as dirty.

He did not even flinch at the sight of the mess. He immediately pointed his hose to the gutter and told me to wash my hands. No fuss no muss. Much appreciated. I went inside looking for a washroom. There were two reserved for the staff only. The girl at the counter was not much help. Sorry, staff only. I lifted my shirt to show her the damage. She did not hesitate and passed me the key to the washroom. I cleaned up and went back out to talk with her. She had reacted so quickly and again without appeared grossed out by what she had seen.

I thanked her for the keys and her lack of reaction. Oh, she say, I volunteer in an old people’s home, see this all the time. How are you, she continues, looking just a bit concerned.

As I said, support comes from the most unlikely sources.

Thanks to all.

Following is a transcript of the eMail exchange I had with the customer service person at the Princess Margaret Hospital. But first, some background. I had a blood test done on May 3rd, in preparation for the Chemo session scheduled for the 4th. I always try and go the previous day. Gives everyone time to [...]

Art Therapy: Session 2

We had Art Therapy today. Must be Wednesday. Three people from last week did not show up, two new people showed up. Except they are not new since the moderator and one of the participants know them. Hey, how are you, long time. And so on. This is a safe place after all. Five women [...]

Not easy. I have spent a lifetime helping others with no expectations. I have not been the centre of attention. In spite of how extroverted I appear to be, I am not comfortable being the centre of attention. I started doing the family laundry at the age of 15. I would help my mother vacuum. [...]

© 2010 I Have Cancer Suffusion theme by Sayontan Sinha