Farokh

Our care has now been moved over to palliative care. All the rugs prescriptions are now in their hands.

We met with Kelly, the nurse, and Dr. Julie Ridley, and a fine meeting it was.

They made modifications to my pain medication. Had a short muffled laugh at using Tylenol for pain medication. It turns out that steroids that I was on confuse the body a bit as to the difference between day and night. Helps explain why I keep waking up at three and am unable to go back to sleep. This steroids are gone, replaced by a single pill of another one. The same steroid I was given to ease the absorption of the Chemo drugs. I am to take one a day for about a week than see if I can reduce to half a pill a day.

Dilauded is still in play. I am to take a pill twice a day, every twelve hours to be specific. These are time release pills that work, you guessed it, for twelve hours. They are 3mg dosages. I have also been prescribed Zantac. It turns out all these drugs may give me an ulcer and the latter drug helps prevent that. The Lactulose is still in effect, my heavy duty Drano.

The cancer is very aggressive and moving fast. The doctor was very emphatic that I should eat anything I want ad not worry about much. Take as much laxative as needed. As many pain killers as required. Not much can go wrong. There is a risk of addiction, funny people. I asked if there was a risk of growing some sort of immunity tot he drugs. She laughed at the notion. The doses I am getting are tiny compared to what is required to grow that sort of immunity.

We have also ordered an oxygen tank that will be delivered today. Better to have one than not. I do not have to use it if I do not need it. It will placed on the second floor, with the tubes reaching the first and third floors easily. I am not sure why I find the installation of the oxygen so hard to take. But there it is. My breathing is a lot more even since I have started the new drugs.

Finally, I have been given a 1mg dose of the Dilauded for emergency use. This pill is fast acting and its effects should last about an hour. This is just in case I ma in pain between drug intake.

The first night on the new drugs was a disaster. The Dilauded did not work, nor did the emergency rations. I took two of those, then resorted to Extra Strength Tylenol. I was in extreme pain, all up my right rib cage. The Tylenol did the trick and I was able to sleep more or less, waking up every hour for the bag, and for taking a pill every four hours. We called the doctors in the morning and were told that it takes about 24 hours for the drug changes to take effect. They were right. Yesterday was almost normal. Last night was peaceful, and today looks good. I am able to behave almost like a normal person. Still cannot have long conservations as I run out of breath at some point.

Dr. Ridley was amazing. I told her I had nothing but amazing medical attention so far, so she has to raise her bar. Lucky for me she laughed.

As usual, no signs of anything resembling death in me. Lungs are clear and so on. I look good, behave well, walk and talk like I am still alive. Except for the liver. I developed finger cramps while in Atlanta. Came out of nowhere. I was holding a book in my left hand and could not open my fingers to release the book from my Stars Wars death grip.I massaged my fingers until they opened up and the cramp dissolved.  This happened on a couple of occasions, and always in the left hand.

Same thing happened when we cam home, except in the right hand. It happened again last night in both hands at the same time. I put it down to the steroids inflaming everything.

Dr. Ridley looks a bit puzzled. She asked if I was suffering from tremors as well, which I am not. She made me hold out my arms in front of me with my fingers extended to the ceiling. She then put her hands against mine and said there were definitely slight tremors there. Blame the drugs? Hell no. Back to the liver. The liver is beginning to not behave itself. She looked at and remarked that I do not have jaundice. Yet. Another part of the puzzle. I am dying but not showing any signs of it.

She was not in favour of our vacation destination. She would have preferred a location from which we could drive home. There is a danger of the airlines refusing us access if I look too sick. Jaundice would qualify in that category. We can always hire a driver to bring us home. Fo’ad suggested we can call him and he would drive us home. There is nowhere within driving distance that would qualify as a sunny destination. Fo’ad suggested we look at the Carolinas. Fly to Atlanta and drive out there. Only a three hour drive. I laughed. This days are long gone. Cannot do a three hour drive. How sad is that?

Everything keeps coming back tot he liver. It is inflamed, irritating everyone else in the body. Lying on my sides causes the liver to put pressure on the area beneath it as gravity takes its toll, sending shooting pains up one side or the other. Pain killers help. Someone suggested that they only help mask the issue. Mask away, I say.

We are cleaning up my office today to make room for the oxygen. My office is the dumping ground for everything. Every magazine, piece of mail, what do we do with that, ends up in my office. The time has come to clean it up and throw everything out.

I have a bunch of stuff for nostalgic reasons. That part of my life is over. I am the only person who is nostalgic over the book that proved DOS batch file programming tips and tools. So much to throw away, to give away. All the magazines will end up in the hospitals somewhere for people to read or abscond away with. All the computer I kept for spare parts will be disposed of. You get the idea. It will be an empty room within a week or so.

Today is a full house day. Devin is coming home for the weekend. We have people visiting for lunch and after. My cousin Fafar who is on town for a conference will be joining us for supper, with her son Ryan. He is a chef of some kind. It will be interesting to see and Devin in the kitchen together. I have not seen years in years. It will be a good visit. I am very much looking forward to it.

You cannot have any more up to date news than this. The oxygen man just left. We now have a huge machine that dispenses oxygen as needed. It takes about 15 minutes to warm up, comes with a 50ft tube, one of those with two nozzles that fit in your nose and go over your ears so it does not come off. You see them in movies all the time. I also have two large tanks, and two small ones. The small ones fit in an over the shoulder carry case. The larger ones comes in a wheelie. All very weird.

Thanks for being there.

We ended back in emergency on Saturday afternoon suffering from severe abdominal pain. These visits are now becoming part for the new normal. It is always interesting to me how accustomed we get to life’s changes. Visiting emergency rooms has always been one of those things you try to avoid. It is now just a part of life.

I am always seen to right away. The critical case that I am. The staff are generally very nice and attentive. They did blood work, blood cultures, chest X-Rays, stomach X-Rays and an EKG.

We were looked after by an amazing doctor, John Dean Jammal. A doctor and a human being. I am a very lucky man. He had read my chart. No questions were asked. He thought at first, that I may have a hernia in my stomach wall. He pushed and prodded which hurt me a lot. Then off to do all the tests.

The freakiest part of the afternoon was the nurse who came in to do the EKG. She had forgotten her glasses at home and was working anyways. The EKG is pretty simple stuff. Her next job was to take blood from an alternate source than the Port-a-Cath, in case the latter is part of the problem. She had to find a vein from which to draw blood. I had my eyes closed the whole time, because I was not feeling so well.  It only occurred to me afterwards, as she was extracting the needle that she had the procedure without her glasses. Yikes.

The results, when all was said and done are as follows. The lungs are as fine as they can be. The are cancer cells in there, but nothing else. Crystal clear. The doctor said if my lungs were the main issue, I would live for another 20 years. The liver on the other hand was a whole different ball game and the main cause of all the problems. The liver enzymes were out of whack with reality with some of the numbers tripling since the end of September. The liver was irritating the stomach and the lungs causing the shortness of breath and coughs that are plaguing my life right now.

I am also severely constipated and have been put on some commercial grade laxative. Big piece of poo just sitting there. I am also not drinking enough water. Drink more he says. The body will release whatever it does not need.

Like everyone else, he was terribly amused by our use of Tylenol 1 as pain medication. He suggested, and prescribed a drug called Dilauded. It is a variation of morphine more specifically Hydromophone. I am allowed to take 2mg of it twice a day. They gave me on the way out. I look at it as Percocet light. It pretty much dulls everything. A whole new lease on life. No pain. All organs dulled. The only side effect I have felt so far is drowsiness. I could sleep for days on it.  I am taking one pill a day to see me through the day. Works wonders.

The other side effect we are very concerned about is that I might become addicted to it. I might have to go cold turkey to wean me from it.

The doctor laughed at that possibility. For some reason, he thinks that is the least of my problems.

He also recommended we go on a trip. Just the two of us. He said if this is a case of lying around the house waiting to die, might as well lie around on a hot beach somewhere instead. We pack all the drugs we could possibly need, including something to take care of a chest infection in case it happens (not likely). We also have to be prepared to fly home if things turn sour. Purchase two one way tickets home.

The doctor does a lot of Medivac work and sees a lot of people who are very sick. He said, that looking at me walk and talk, the colour of my skin, and my general good health, I should have no problems going somewhere for a week. We are clearing the idea through Dr. Hedley this week.

We have moved our appointment with palliative to November 3. They are supposed to take over from Dr. Hedley. I will report more when I know more.

Finally, the big party is set for this Sunday at 3PM. Thank you to David Powell for generously providing his house for the occasion.

I cannot thank you all enough for all the support you have provided.

Who knew I would be alive to see this Halloween. Yet here I am. You might recall my distress last year at not being able to celebrate Halloween in the style we have grown accustomed to. The family was in distress and no one was in the mood to greet the kids and hand out candy.

This is a very different year in spite of the circumstances. My new drugs kicked in. I was able to carve two pumpkins. Janet bought a lot of candy. We get about 150 kids at our door. We have LOTS of candy.

Paulee, Janet’s sister, has spent the past couple of Halloweens with us. She brings Carys over to trick or treat in our neighbourhood.  Carys has been calling me Uncle Wook for ever. She had trouble with my name and that just blurted out of her and has stuck ever since. We are madly in love with one another.

This year was no different. Carys came over as the wicked witch of the west, green face included. We were also joined by Janet’s brother Phillip and his family. Paige who is 2 weeks older that Carys went as a princess. Cute as a button. Her brothers escorted them through the neighbourhood and demanded a 50% commission of the candy collected.

The night was very busy and active and noisy. Paulee and Phillip did the honours at the door for most of the night. Phillip was shocked by the number of kids who show up here. They live in the suburbs and do not get half that number of children parading through.

It was a cold night and I lay on the couch under a blanket listening to all the commotion. It was utterly fantastic.

Sorry for not taking pictures. I discovered in Atlanta that I am having trouble taking pictures. Takes more concentration that I can muster up. Who knew taking pictures requires concentration.

I paid the price for all that activity the next day when I spent most of the day in bed. Could barely keep my eyes open. Such are the ways of the world.

We went to Atlanta to visit my brother and the rest of the family. My niece Khandan, and her family came up from Louisiana. My Aunt, Iran Joon and Habib, came down from Vancouver. Ruja, Dariush, Gaby and her child came up from California. Along with the rest of the nieces, Shamsi, Shayda, Devin, my son, this brought the total of participants to 20. it was a full house.

Our family and Fetneh stayed in a hotel, the Courtyard Marriott. It was a motel, very quiet once we changed rooms away from the exit doors. Silly idea to get rooms next to the exit doors. Fo’ad lent us one of his cars. Janet calls his yard the Dukes of Hazard for the number of cars that constantly populate it. We forgot to put gas in it before returning it. I am sure he will not invite us back as a result.

It was a very difficult weekend. The grand nieces showed us some of the gymnastic moves. They are so flexible. It should not be legal. Specially not showing it off that way. I lay on the couch mostly and watched. Truly a beautiful sight.

No one knew quite what to say or how to behave, specially the first day we were there. Khandan appeared to be the hardest hit of all. We spent quite a bit of time holding hands. Not saying anything. There is nothing to say. Just sitting holding hands. More than enough love in that action. Her husband, Scott kept disparaging himself. That is usually my job, he kept beating me to the punch. What a hoot. He is a very nice man, full of life and totally devoted to his kids.

My grand nieces and nephew are home schooled. Not through any sense of political or feelings that barriers need to be broken. Khandan felt that sending her children to a school system that was rated second last in the U.S. would probably do them an injustice. Khandan, herself has grown as a result of the experience. She was not really equipped to do home schooling and had to learn the ropes as she did things. Reminds me a bit of the philosophy behind the Warldorf Schools that Devin attended. Very organic. Her efforts have paid off in spades. Thigh I am not sure she wants to paid in spades.

We ate lots and lots of rice. Green rice and fish on the first night, kebab on the second, and jeweled rice on the third. We also had a turkey on the third day just to add a sense of balance to the meal. I ate very little. The appetite is healthy, the stomach, not so much. I have had two bouts now of severe stomach cramps and averted a third one the other night. Small plate of rice for me. I had yogurt with my rice, which is not usually a good thing when you are susceptible to cramps. But I could not help indulging. Imagine, yogurt being considered as an indulgent.

Everyone left on Monday. Copious tears all around. Specially me. It is strange and disturbing to have to say goodbye to everyone. The English do not have the equivalent of Adios or Adieu, which is too bad. Good Speed just does not have the same effect. So Adios it is. My brother is coming up for a visit, so his was a good bye.

The trip was pretty uneventful. We requested wheelchairs everywhere we could. The systems in the U.S. and Canada handle things differently. The one in the U.S. works a lot better where all special assistance is handled by the airport and not the airlines. They have a speciually trained crew that comes and looks after you. Very efficient.

We went to New York, you will recall in August and ran onto the same issues we ran into this time around. The Air Canada staff process your tickets then make you sit in the lobby while you wait for an agent to look after you. They always seem to have three people ahead of you so you have to wait in the grand lobby that is Terminal 1. Nothing to do but sit.  We asked for a time frame on our trip to New York as to when we would be taken in. There was no rush they said, lots of time. Same story this time. It occurred to me that they did mind us sitting there till we had to board the plane.

Lots of time? For whom? I suggested to them that I would rather spend the time in the Air Canada Lounge than in the great ballroom. Busted. There was no comeback.  An Agent appeared within minutes to look after the elderly lady sitting behind me. We have a chair. Are you alone? Yes says the lady. Well you will have to hire a porter to take your suitcase because I am not taking it, says the agent. I am not compensated in case of injury. But the suitcase has wheels. Nothing doing. Hire a porter or think of something else. The agent was quite rough and very rude. There was no room to bargain. There was also some question as to whether the porter could go through security, which meant she was on her own past that point. She decided to walk. Upset to say the least. Gives the words Special Assistance a whole new meaning.

Our turn next. Same agent. Same rudeness. Wrong target. She asked how I was. I am in a wheelchair, I said, how do you expect me to be. You don’t have to be rude about it she says. I lowered the foot supports before getting into the chair which sent her into a tail spin. I must not do that because I might trip over them. Oh my God! I exclaim. She decided that she will get another agent to look after me if I am going to use that uppity voice. Go, baby, go. get another agent. Could not possibly be worse than you. The second agent was truly wonderful. I regret not getting her name to send in a commendation.

No troubles in security. The U.S. customs agent did not even ask me about Iran. A first in 42 years of travels back and forth. No questions, no opening of bags to check the camera. Go on in, have a nice trip.

Janet and I spent a bit of time in the lounge. We ate and drank, then made our way to the gate to join Fetneh.

The trip back was the same. Uneventful. No questions, have a nice trip. See you later. Except for one incident. We were being cleared to go through security. They have a gate at which they check your passport and boarding pass so the security people do not have to do it. I got into a discussion about my imminent demise with the guy. A refrain I have heard often came up. People do not decide when they die, God does. I suggested that God has had his say and I am probably in line waiting my turn. Your are pessimistic, he said. You never know. I will pray for you through Jesus Christ, our Lord.

Janet does not have any time for any of this stuff. I, on the other hand, relish every second of it. One of the tenets of Christianity is the belief that a goal of life is to die and attain the Kingdom of God. Yet faced with the possibility of my death, the man says I am being pessimistic. Surely the opposite is true, and he should be jealous of my good fortune.

We got off the plane where a chair was waiting, but without a cushion. Two shards of metal jabbing into my ass. The Air Canada Agent was unrepentant. This is the way they all are. I regret not letting her go and making her get me one with a cushion. We braved the soulless chair. Customs was a breeze.

Finally home.

I have come to the conclusion that Air Canada goes out of its way to hire Agents that are belligerent and rude. I can see them in the interview process. Oh, I am sorry, you appear to have a sense of humour. Here is the number for West Jet or Porter. You could never work for us. The ruder the agent, the less helpful, the better the interview process.

I am glad to be home. Unfortunately, this was the last trip we will take. I cannot risk being away from my hospital. Everyone was very kind and considerate as I lay on the couch and was waited on hand and foot by all. I do not like those circumstances, but there is little I can do about it.

More posts on their way.

Date: 2003</p>
<p>Location: Roatan Island, Honduras</p>
<p>Story: Out for a walk. This beautiful woman is performing her morning constitutionals. I took two pictures of her. She is not looking at in the first. I am not sure who caught whom int he second instance.
Date: 2003

Location: Roatan Island, Honduras

Story: Out for a walk. This beautiful woman is performing her morning constitutionals. I took two pictures of her. She is not looking at in the first. I am not sure who caught whom int he second instance.

Date: 2003

Location: Roatan Island, Honduras

Story: Out for a walk. This beautiful woman is performing her morning constitutionals. I took two pictures of her. She is not looking at in the first. I am not sure who caught whom int he second instance.

A hard day - October 19, 2010

My health is deteriorating rather too fast for my own taste. The steroids keep me from running out of breath, but I still find myself breathing hard too often. I am trying to figure out how much of this psychological, and how much physical. I am leaning toward the latter though would prefer the former. Today has [...]

Photograph of an old lady sitting outside her home in Roatan Island, Honduras

Photograph of an old pier remains, while the new pier is erected. Roatan, Island, Honduras

An incredible picture of the Eiffel Tower looking up fromt he ground

Death comes in unexpected ways, some suddenly, others planned ahead. I am one of the latter. I will be gone in the next two to four moths, maybe longer, but not by much. So life goes, you are born, and eventually depart, having hopefully made a small difference in the world.

© 2010 I Have Cancer Suffusion theme by Sayontan Sinha