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.

Yesterday was the one year anniversary of my operation. I am not sure if anniversary is the right word. I guess it would from the point of view that I am around to make this entry. On the other hand, I am not sure one celebrates an operation, specially an eight hour job.

I had lunch with my father in law the other day. I always enjoy his company (he may be reading this). We talked about the operation. I remember waking up and wondering when they were going to start. We are finished they said. I lost eight hours with those words. I have no words for what it feels like to lose eight hours out of your life. Almost a full day.

No recollections, no memories, nothing. Eight hours just went by and you have no idea what happened. You are alive, so it could not have been that bad. The lack of recollection is hard to forget or get over. My pa-in-law remarked that it is probably as close as we can get to death and come back to this life. Strange thought that. If that is what death is like, then I will have no recollection of that either. Except it may last a bit longer than eight hours.

I am seeing my oncologist this coming week, and my surgeon the week after. I might suggest we have champagne to celebrate. If only I drank. A number of my friends wanted to know if I was about to change my ways and start drinking.

On a separate note, I got a phone call from a telemarketer from the U.S.. She wanted to know if I wanted to move by business bank account to the TD Bank. I told her I was out of business. She went on to explain the benefits of making the move. I told her the company was closed. She went on again with her script. Again, I said, the company is closed. Oh, you are out of business? I told her that was a bit harsh and I still prefer to say that y company is closed. They can still provide me with some services, for instances coming up with a new business plan.

There was little point in continuing. She was very nice on the phone. Had a good way about her. I did not want to be rude and just hang up. I told her that I was not interested because I have cancer. She did not miss beat. Calcium is good for fighting cancer, she has read. A telemarketer is giving me cancer advice. Wonderful world is it not?

She mentioned that calcium creates an alkaline environment which is not favorable to cancer cells. She also suggested that I deprive the cancers cells of oxygen. I explained that while it was true that an alkaline environment is not favorable, I am not sure how much calcium you have to take for it be effective. It is highly probable that the amounts you have to take would damage your system. That is possible of course, but she had just read an article on calcium healing cancer. She was a nice lady.

I think every day of my friend who is about to go into palliative care. Her cancer has run its course, I accompanied her for her appointment with the department the other day. Strange to be there. I am glad I went.

Why does it take a crisis to find out who your friends are?What is it about a crisis that brings some people closer to you while alienating others?

We read and talk about people not knowing what to say, or how to behave, but I think there is more to it than that. Not sure what it is, have not read any studies on the subject. Maybe I should. Or not. There appears to be some opportunism or reverse opportunism in all of this.

A bit of – I have no use for this person any more. They have stopped being fun. Turned into a downer. All they talk about it their chronic condition. Not interested in watching sports any more. Not interested in shopping and all the other things that made you fun to be with. Why is the chronic person so quick tempered and angry all the time? Time for new friends, or more to the point, renewed friendships.

People rising to the occasion, visiting, talking, making their presence felt one way or another. Everyone catering to their strengths. Some just dropping by for a visit, companionship. Others making conversation, others lending you their cottages, or places to while away your time. Whether one takes advantage of the occasion, the offers, is hardly germane. One appreciates the sentiment, the offer, the gesture, the sentiment.

People are constantly telling me they might die any time as well. Avoiding the crisis. Death is hardly ever a pleasant conversation, nor is the specter of imminent death, whether speculated as something that is about to happen tomorrow or in ten years, a very pleasant thought to live with. Yet, here we are. Are people attempting to defuse the subject? Is there a benefit to telling the chronic person that there is competition to dying?

We would surely leads our lives differently if we believed truly that we could die at any minute, negating the doomsday scenario that prevails the chronic person. We live our lives the way we should, planning ahead, looking forward to watching in horror as our children grow up. Waiting patiently for the grand children, the travels, the parties, the friends.

Only a crisis provokes serious concerns about imminent death. The concerns soon evaporate as reality set in. We do not know when we will be lining up at the pearly gates. Even my friend who is dying and is seeing the palliative doctors has really no idea when the day will come. We just know that we have to be prepared for it in a way others don’t.

The crisis that is my condition has subsided somewhat. People have returned to their daily lives. This just a footnote to keep track of. So it should be. It is enough that it has disrupted the lives of one family, let alone a need for it to disrupt those of so many more.

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.

© 2010 I Have Cancer Suffusion theme by Sayontan Sinha