I Have Cancer - 2010 January

Picture of the week - January 29, 2010

Jan 292010

Location: Dana Point, California, 2006

We headed to San Diego for a family reunion. The family on my mothers side. My cousin Ruja lives there. We flew to San Francisco, rented a car, and drove south on the old Highway 1. We planned the trip meticulously. We planned on driving maybe three hours a day, and spend the rest site seeing. beaching, resting and so on. We also drove ridiculously slowly, stopping often to let others pass. We were in no hurry. It was a superb trip, highly recommended.

The second last leg of the trip took us past Los Angeles. We had no choice but to drive 7 hours, mostly on the main highway, attempting to bypass as much of LA as possible. We finally ended up at our destination, Dana Point.

The hotel we had booked sat high on a hill overlooking the bay. We were tired, looking forward to dinner and a bit of rest. I took some pictures overlooking the bay, the light was disappearing, not a good time for pictures. I finally decided to call it quits and started reading a book, my camera resting on the stone wall designed to prevent us from catapulting into the abyss.

These two ladies were talking a mile a minute on the balcony above me. It was really irritating. They had these high nasal voices designed to grate on your nerves, sending you to the closest Asylum for the Insane. I tried to ignore them. It was very hard. They went on and on about nothing in particular. Through the fog of attempting to ignore the conversation, I heard one of them say Oh my God, look at that. Someone should take a picture.

I looked up.

She was right.

I did take a picture.

A note about the format. This picture was taken on film using a very old Mamiya C330 Professional Dual Lens camera. The Professional moniker is a marketing thing. This camera manufactured between 1969 and 1974. It is, what we call, a medium format camera. It takes square pictures. The pictures are printed on 6cm x 6cm paper. The resolution is extremely high. The digital versions of these cameras come in at 33 or 56 megapixels. The camera is still in good condition.

The week that was - ended January 16, 2010

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Jan 232010

The week atrted with the amazing news that led to the Euphoria post. What can top that for the beginning of a week?

Attended two sessions at the Wellspring centre. The first has to do with Brain Fog, the second Q-Gong.

Brain Fog

It turns out that Brain Fog is not restricted to chemo patients. We all have suffered from this condition at one time or another. You go to another room to get something, but forget what it was as soon as you enter the other room. Chemo patients seem to suffer from this condition with a slight variance, we don’t even know why we changed rooms.

The first session was geared to be an introduction of sorts, explaining what is yet to come. People talked about what they are going through. Nothing dramatic or surprising. Forgetting why you went to the store. Make a list. I did, then forgot where I put the list. I forgot about an appointment. Looked at the calendar three or four times and still forgot. Multitasking – what a joke. Can barely juggle one even let alone try to handle more. And the list goes on.

We will be doing exercises that will help us remember. Games and strategies. Word associations, and lots more.

Q-Gong

Fascinating. This is the mother of Tait-chi and similar exercise routines that have been developed over the years. Another discipline that tries to make you aware of your breath. we were taught how to breathe as it is the backbone of the other exercises. Through the stomach, not the chest. Breathe in through the nose, out through the mouth. We had to put our hands on our stomach to make sure it was rising and falling. The instructions got slightly more risky, at least for me. We had to push in on the stomach to expel the bad chi through our back. This is a bit problematic for someone who has had his insides cut up. At one point, the moderator decided I needed help with the pushing of the stomach. I had to stop her. Why she asks, that is the location of my operation, says I. Ah, she backed off right away and told the class to not do anything that would hurt them.

We also did an energy test of sorts. You put you hands out in front of and cross them at your wrists. She then attempts to push down your hands and you resist. Hands stay up. Someone stands behind the first participant and gives the person a thumbs down over their head. The same exercise leads to little resistance as the hands collapse. She asked me to volunteer, which somehow defeats the notion of volunteering, methinks. I stood up and extended my arms are instructed. She pushed my arms down with great ease. Turns out the thumbs down saps the energy from everyone inthe room. Bizarre to say the least. Doing a thumbs up reverses the process. I guess this means we have to enter rooms and give the place an immediate thumbs up to increase the energy level. Will have to try that.

All the exercises were terrific. I just have to discipline myself to do them regularly while at home. Working on it.

Other things

I am reading a bit more. The week was high in energy for me. No chemo, or anything else. Felt very strong, but was still exhausted by the afternoon. A bit strange. Just have to adjust. I think I maybe push myself a bit harder when I am feeling well resulting in the fatigue. No worries.

Went shopping, mostly for food and stuff. All good.

Picture of the Week - January 22, 2010

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Jan 232010

Tree in yard

Date: October 2008

Location: Atlanta, Georgia

Some pictures are right under your nose. You just pass by the subject so many time, you start taking it for granted.

This tree is located in the front yard of my brother’s house in Atlanta. I have passed by it many times. We park under it. Walk around it. It is always there, growing majestically. I have no idea what kind of tree it is. Just a simple everyday tree in the front yard.

Good and Evil

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Jan 182010

I have cancer as a punishment for my evil ways. Why could the punishment not have been the flu? Or something equally benign? I guess it could have been worse is I had sinned more. I watch House every week on television, and there are a number of conditions that are worse than cancer.

I noticed this couple at one of my chemo sessions. He, the patient, was not a happy camper. Nothing unusual, few of us smile on these occasions. I noticed them again at my last Chemo Daycare part. He was still not a happy camper. Barely said anything. I nodded at him, and he nodded back. His wife/partner/sister who was accompanying him struck up a conversation.

This is not the first time I have heard this interpretation of our condition. SHe maintains that he got cancer because he strayed from the path. This is his punishment. He will get better when he returns to the path.

We continued talking, wandering into a discussion of good and evil. The notion of Satan or the Devil doing his work, while God stands by. Janet left the waiting room. These discussions rarely go anywhere. I enjoy the mental exercise. That is what it is. Getting around the inconsistencies is quite an exercise.

The idea that God would stand by while the Devil goes about his evil ways begs the question of what sort of relationship these two have. I am assuming, of course, that there is such a thing as the Devil or Satan. More on that later. Does God have a contract with Satan? God says, look at him and his evil ways, take him out. I say he is a category 2 evil. Category 2 you say, well that stands for Cancer. Got it.

The sinner repents, and God says, that is good. You are back in my flock. Devil, here is your commission, job well done. I still have cancer, the price to be paid for my sinning ways.

The woman who brought up the argument that Cancer is a punishment belongs to the Pentecostal Church. He has cancer because he strayed from the straight and narrow. She will not get cancer because she is on the path through the salvation of Jesus Christ. If God will heal, what is he doing here, in chemo daycare? The answer to some comment I made returns this response: Did God tell him he has cancer? Who are going to believe, God or the Doctor? This is the second time I have come across this particular twist.

If there is a God the almighty, why is there a devil? Why cannot God take him out? God the good, Satan the evil. Are the lines really that clear?

The contradictions in the arguments are astounding. Reconciling the concept of good and evil is, in itself, a Herculean task. What is good and where is the separation between good and evil? Who defines what is good, and by contrast what is evil? Darkness is the absence of light. Is evil the absence of good? Which brings us back to who defines what is good?

The lines separating good and evil get murkier as one gets older. The advantage of not knowing with absolute certainty what all the answers are. Fire is both good and evil. The definition of what is good is getting harder.

Is my cancer good or evil. On the face of it, I can say with absolute certainty that is evil. On the other hand, this blog has helped people who either have cancer, or know someone who does. Getting cancer has given me the opportunity to delve into afreas I would not normally venture into.

My relationship with Fetneh has become stronger than ever, as has my relationship with my brother. My wife and I are closer than we have ever been, a renewed relationship, if that were possible. I cannot work, but I can still help people. Religion plays a bigger role in my life. Contemplation of life and events that surround me have gained a new importance and a validity of sorts. Is cancer bad? I can truly say that it is a pain, and for sure not a good thing. The effects of it, though, have been surprising and an opportunity for spiritual growth.

Baha’is are encouraged to fast once a year, between March 2 and March 21. We are enjoined to not eat or drink between sunrise and sunset. We wake up before sunrise and eat enough to see us to sunset. We also say prayers, one of which is the prayer for the fast. the fast ends with the New Years celebration called Naw Ruz, literally translated as New Day. One of the prayers celebrating Naw Ruz has a passage that is particularly interesting to me:

“Shouldst Thou regard him who hath broken the fast as one who hath observed it, such a man would be reckoned among them who from eternity had been keeping the fast. And shouldst Thou decree that he who hath observed the fast hath broken it, that person would be numbered with such as have caused the Robe of Thy Revelation to be stained with dust, and been far removed from the crystal waters of this living Fountain.”

This opens an amazing door for compassion and forgiveness. Qualifying an action by the amount of spirituality or sincerity in observing rules and regulations.Can this be translated to the observance of other rules?

Some things should be considered as evil, though not at the behest of Satan. Murder in all its forms, as in genocide, is reprehensible. The effects of such actions may not be reprehensible. If death is the ultimate goal of life, then surely such actions fulfill the life long destiny of the victims ushering them into the next life.

Is this too far fetched

Picture of the Week - January 15, 2010

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Jan 162010

Location: Barcelona, 2006

This picture, as promised, was taken under the overpass. I liked the colours and the lonely chair. Who would come and sit there? What would they be contemplating? So many questions.

Location: Barcelona, 2006

This picture, as promised, was taken under the overpass. I liked the colours and the lonely chair. Who would come and sit there? What would they be contemplating? So many questions.

Euphoria

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Jan 112010

Went to see Dr. Kennedy today. She was delighted to be the first to give the results of the CT-Scan as well as CEA blood test numbers. The CT-Scan results are outlined below. As you can see, a huge drop in the size of the tumours.

Janet and I were both a bit overwhelmed by the information and under-reacted, to say the least. Went out for lunch to celebrate. And cried. And hugged. And cried some more.

I have come to the conclusion that it is the crying that expels the cancer cells.

The CEA blood count is also down rather dramatically, from 1266. on November 18, to 392.9 on December 16. All pointing to a move in the right direction.

That is all I can write for now.

All sizes in cm	16-Nov-09	11-Jan-10	%

Liver	21.10	14.80	29.86%
Segment 7	8.20	6.20	24.39%
Segment 8	6.70	4.70	29.85%
Segment 3	2.40	1.40	41.67%
Segment 5/8	3.80	2.50	34.21%

Lung	1.60	1.00	37.50%
Right Lung Base 1	0.80	0.40	50.00%
Right Lung Base 2	0.80	0.60	25.00%

The week that was - ended January 9, 2010

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Jan 102010

This turned out to be a very hard week. I will have to write about it a bit later when all my thoughts have been worked out. Sorry, but I have to think things out. The emotional affects the physical and vice-versa. The first part of the week was hard emotionally. The rest was hard physically.

I went in for my Neulasta shot on Monday, about which I have already written copiously. Neulasta appears to have a debilitating effect before its benefits kick in. I spent most of the week in bed, often in tears for no apparent reason. Slept through a lot of it. Had a moderate temperature all week, hovering between normal (36.5C) and 37.4C. Nothing major. The chemo instructions are to NOT take anything for a temperature. Since we cannot tell for sure that the temperature is due to Neulasta, I spent the week with the temperature and no relief.

The first time I took this drug, I spent 30 hours suffering from lower back spasms. I waited for them all week. There were small signs of them almost every day, but they passed quickly. As in one spasm then it was over. Things changed on Saturday night. Judy and Arlin brought some pizza over from the Magic Oven, one of the best and most expensive pizza houses in town. I spent most of Saturday in bed trying to regain my strength. I was not too successful. Around 9PM, my ribs around my liver started to hurt much as my lower back the previous month.

I went back to bed, took two Tylenol1s (T1s), rolled over on my left side and assumed the fetus position. This was the only position that provided some relief. I tried them all. I cried and cried. Devin came up to console me, and still I cried. It was very hard. I started to feel a bit better when the drugs finally decided to perform their designated task. I barely slept the whole night. Woke up on the hour, took T1s every four or five hours. I have been pain free, since about 11AM when I took my last dose. This could be a good sign.

I shoveled the meager amount of snow we have had on Friday morning. More of a swept the snow away than actual shoveling. Cleaned the snow off the car, so Janet would not have to. She went to work, I went back to bed. Could not believe how exhausting shoveling a couple of inches of fluffy snow was. Slept trough to 12:30, and woke up only because I was very hungry. Warmed up some rice, then the phone started ringing. It was very bizarre. It had not rung the entire morning, but started doing so once I was awake.

Sharon Singer came over for a chat and a look see. I was in great shape. We had a wonderful time to be repeated soon, I hope. One of those rambling discussion I tend to have with a few of my friends.

Back to bed by 8PM. What a life.

The coming week has a few activities in it. I am seeing Dr. Kennedy, my surgeon on Monday, followed by Brain Fog on Tuesday, and Q-Gong on Wednesday.

That should keep me out of trouble.

The week that was - ended January 2, 2010

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Jan 102010

The days are a blur. Christmas was barely noticed, as is the Hew Year. Cannot stay up to celebrate the coming of the new year. I guess I will have to celebrate when I wake up in the morning.

This is a chemo week. My oncologist’s New Year present. Went in for blood work on Tuesday morning in preparation for my date with the Chemo Daycare. I love the nurses in this unit. There appears to be little pressure on them. They are calm, efficient, attentive, and always smiling. We joke around a bit. One of the nurses is calling me by my first name, which is cool. She is the one who has had breast cancer and gone through the chemo experience. Very reassuring and listens should I decide to rant or anything.

I have been asked by Wellspring to participate in a study with the outfit that runs the Brain Fog sessions. These sessions are meant to increase your cognitive abilities. They need to know if the sessions are working or not. I agreed to participate. What else do I have to do?

I attended the session on Tuesday morning. It was supposed to last between 60 and 90 minutes. But I talk fast, so it ended a bit earlier. Hah! The study was interesting. They made me sign a consent form, I barely skimmed through it. Big mistake. The first question had to do with recalling what was on the consent form. I recalled one item, which turned out to be the most important one. Lucky me. Don’t ask me what it was. Don’t remember it any more.

The rest of the questions were interesting. They read out a list of words, and you had to recall as many as you could. They would reread the list to allow you to add to the recall. Never recalled all of them. To make matters worse, they asked you how many of the words you recalled about 30 minutes later. That is cheating.

Same with a bunch of number. They kept adding one number to the list and you had to repeat the numbers starting from the first one. They showed you a drawing which you had to replicate. Nothing complicated, but reasonably involved. Of course, they asked to draw it again 30 minutes later. Cheaters. I aced that one.

And the questions went on. They read you a snippet of a story from a paper and you had to repeat the story word for word.They asked you how many years of schooling you have had starting from day one. Are you kidding me? I changes countries three times, and schools I don’t know how many times. This might be fine for someone who grew up in one, or maybe two countries, but not for a migrant habitue, as it were.

I had to fill out these forms full of questions. Like, do you miss sign posts when you are driving? I told the police officer I was suffering when I went through the Stop sign, but he did not believe me, honest. Nah, no problem there. It was a long list. The only one that I highlighted was the trouble I have with reading. You keep reading the same page over and over again, until you realise the futility of what you are doing. Having said that, I just finished reading two books by Malcolm Gladwell. What a lovely writer he is.

The moderator decided that I was doing fine.

The session starts on January 12. Will keep you posted.

Wednesday was chemo day. Janet came with me. I decided to sleep through the process and she went shopping. Easy peasy, as they say.

The rest of the week was spent recovering from the chemo. We went shopping on Saturday because Janet was going a bit stir crazy from being in the house all the time. Went to see It’s Complicated on Sunday, to which all I have to say is Not! Chick flick.

That’s all there is.

Picture of the Week - January 8, 2010

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Jan 092010

We were there in 2006. My wife became very sick and was bed-bound. I asked the concierge to point me to the more derelict parts of the city. Sometimes the best places to take pictures. He suggested somewhere close to the downtown area we had already visited. Nah. Been there, done that. Worse than that, I said. He sighed and suggested a different area.

I looked at the map. It was not there. He smiled and said, no, not on the map. But if you go past the map, you will see this area. Not for tourists.

I took the subway to the end of the line and started walking back. People left me alone. It was a Sunday, and the streets were deserted. The few that were out were a bit amused at what I was doing.

This picture was taken under an overpass. There was a lot of graffiti on the overpass, and some of the buildings. That will be next week’s picture. Then, this chair overturned with a pair of boots nearby. Could not help but think someone had been vaporised.

Place: Barcelona

Story: We were there in 2006. Janet became very sick and was bed-bound. I asked the concierge to point me to the more derelict parts of the city. Sometimes the best places to take pictures. He suggested somewhere close to the downtown area we had already visited. Nah. Been there, done that. Worse than that, I said. He sighed and suggested a different area.

I looked at the map. It was not there. He smiled and said, no, not on the map. But if you go past the map, you will see this area. Not for tourists.

I took the subway to the end of the line and started walking back. People left me alone. It was a Sunday, and the streets were deserted. The few that were out were a bit amused at what I was doing.

Coping and other things

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Jan 062010

Here we are a full four months after the operation. Is it time to reflect yet on what has happened?

We (my family) are constantly amazed how we humans adapt to whatever is thrown at us. Whenever you dare think things are really bad, you come across a woman without a nose. But adapt we do, and reflection is part of that.

I grew up traveling and being displaced a lot. This did not appear to be a major issue until people starting pointing out small things, like culture shock and the down side of displacement. Other effects are less obvious. An incredible desire to protect yourself from everyone. Displacement creates a lot of anxiety. You keep having to prove yourself over and over again. At least, you think you do, and therefore attempt to do so. You become very insecure, whether you show it or not. In some cases, like when you are the only coloured person in an all white boarding school in the UK, other problems arise and existing issues are exacerbated.

I tell people that I was a really dumb boy. Stayed dumb for years. Oblivious to what was going on around me. Almost insensitive. I think, upon reflection, that I was not so much dumb, as removed from what was going on. The protection mechanism coming in full force. You react very slowly or not at all to events. Friends are hard to come by, not because people are not friendly, but because you are in some major ways, shut down. You fail to notice overtures. You behave in strange and unpredictable ways insofar as you are the stranger in the room unaware of some of the cultural differences that, in hindsight, were shining like beacons on a hill. I do not have examples, but I know they were there. One of the results was not being invited to parties, for instance.

Getting cancer has some of its own unsettling effects on your body and mind. To say the least. With one major difference. This time, the effects are somewhat mitigated by the fact that you have had a life, a marriage, new friends, work. The stranger in the room this time, is the cancer. A very unwelcome stranger that seems incapable of taking a hint. Definitely not invited to the party. Why does it keep hanging around?

Your past issues are held at bay for now. They seem so unimportant. You have to deal with the uninvited guest. So many of my friends have remarked on my being a lot more open, more receptive, calmer. This has not been a conscious decision, or something I worked on tirelessly for a few years under the watchful eye of a therapist. It just happened because you no longer have the energy to devote to being guarded, or defensive, or wary, or whatever your personality displayed at the time. You are way too busy wondering about the whys and wherefores of your current dilemma.

I am a lot more short tempered than I have ever been. I know I have mentioned this before. I thought it would be a phase. Not so lucky. I have no patience left. My tone shows it. Janet and I were shopping at Chapters (book store) the other day. This guy was paying for his books, but the stroller he had with him was blocking the way. I have no idea why people do this. He is standing at the cash, while the stroller is blocking the path behind him. I said: Excuse me do you mind moving your stroller. He gave me this look that translates to: what is your problem? I think even Janet was a bit surprised. I realised that my tone had been quite sharp. I was miffed that he had the temerity to block the passage. How minor an issue, and yet so large and prominent.

Next week is the start of two programs at Wellspring, Brain Fog, and Q-Chong. Looking forward to it.

Tomorrow is CT-Scan day. We will have the results hopefully by Monday when we see Dr. Kennedy, my surgeon. This will be the first time we will know for sure whether the chemo is working or not. I have no reason to assume it is not. I am in generally good health, positive, strong and mighty, as it were. The Neulasta helps when it decided to kick in. I do not have a cold, or any other infection. Small signs of the effects of chemo are there for those who are interested. Thinning hair, low platelets that result in nose bleeds. Nothing serious, just something to be aware of. Yet, I am a bit anxious. CT-Scans are pretty innocuous affairs. They cannot use the Porta-Cath and have to insert a needle to feed me the poison. That is the worst part, the needle. The rest of the scan is a quick and smooth event. That damn needle. There is apparently a new Porta-Cath coming to Canada that will allow them to use it for CT-Scans as well. I am hoping they will replace mine. The 90 minute operation is a no-brainer.

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