Farokh

avastin, avastin
what art thou

you come in a plastic bag
invading my heart
poisoning my body
weakening my spirit

racing through my body
wrecking ball that you are
stopping blood vessels from forming
killing cancer cells

yet here we are
eight days later
reeling from your invasion
exhausted from your tentacles

sleeping or awake
not feeling like much
going through the motions
dealing with your pain

avastin, avastin
what art thou

I am sorry to report right from the start, that I did not take pictures. I am disappointed. The opportunity almost presented itself, but I was not able to explain why I wanted to take them. More on that further down.

The mood in the room was light and very positive. Only three others showed up, which was a bit disappointing. As you may recall, the topic of the day was anger. More specifically, which I did not hear, the animal that best represents our anger. I love animals, and do not have one that I can single out for this privilege. That particular part of the instructions had not registered. My painting does not have an animal in it, unless you consider the face that of an animal.

We started with the usual round the table is everything OK discussion. I decided to speak first. Big step for me. Surprisingly easy to do. There was more discussion this time about the types of cancer that we have. Or had. Or are dancing with. Or living with.  I mentioned that I had colon cancer. One of the participants urged me to use a different set of words to describe what I have,m since language has a huge impact on how we feel. Saying that I “have” cancer, has a negative impact on me. I do not recall what language she suggested. It sounded far more passive. It makes sense on some level. But I do have colon cancer, as the oncologist appointment confirmed. I felt that I am saying I have cancer until the doctors tel me I do not. It does not depress me, or change my mood. It is a fact. I pointed out that when the cancer has spread as far as this one has, you have cancer. That is all there is to it.

The moderator had to reign in the discussion several times. We were almost out of control. We had to get to the subject matter and start our art and stop talking, even though it was interesting and helpful. One participant talked about an issue she is having with a friend (relative?), the mention of whose name upsets her. How do you handle these situations? Not enough time for a full discussion, though the topic did return under a different guise. I will keep you in suspense for a while.

One person went to the gym for the first time in a year. Muscles ached that should not be aching. Happy aches. She has started to put on weight and felt strong enough to face the gym. She was athletic before and the return is a huge step forward. Someone else talked about putting on weight. We are all putting on weight which is a good thing, to a point. I wonder if we are eating our way out of this?

A very brief discussion took place over the tole of friends and relatives. This is a recurring theme. I find it interesting. On one hand no pressure should be put on others. They don’t understand, do they. On the other, how dare they abandon us? Takes too much energy to deal with the externals. Why have they stopped calling? Someone said it is almost as if they are doing crisis management for the first couple of weeks, then return to their lives. Surely that is normal and to be expected. I did not say much. I have the great bounty of a huge number of friends and relative who keep pestering me. Bring it on.

No one seemed to anxious to start painting. Everyone said they have no anger. Either dealt with it. Never had it. Gone. In the past. Move on. One person had spoken me about her issues before the session started. She suffers from an anxiety disorder. She described the symptoms to me. I have a good friend who has the same issue/condition. I am well versed in it. The participant mentioned that cancer is a walk in the park compared to the the anxiety thing.

I will start with her painting. It is funny how we paint things, the interpretation of which takes us by surprise. She painted a stick figure of herself. Eyes, top of head, arms and legs. Just enough to give it shape and proportions. Around it were red strokes, akin to flames in orange and red. To one side was a series of blue strokes, and to the other green. Almost symmetrical. The red flames encroached severely on the person in the middle. The blue and gree were a bit farther out.  This is an anxiety attack, where the heart palpitations start, and the person feels engulfed by flames. The blue is a coll breeze that should help calm the person down, and the green represents more calmness.  The attacks occur most often in enclosed spaces, elevators, the subway, specially if it stops in a tunnel and the doors remain closed. No air, no breathing, flames run rampant.

Someone asked why there was no mouth. I asked why the question? What is the significance to the mouth not being there? The painter did not have an answer. The person posing the question suggested that the lack of a mouth would suggest that she cannot talk to express herself. By which token, the lack of ears means she cannot hear, and nose she cannot breathe.  Much to my surprise, the painter agreed that during the attacks, she cannot breathe, or talk, or hear anything. Her heart starts palpitating, she gets very hot, heart races, then everything stops. The moderator asked her how her painting made her feel. She responded that her anxiety levels were increasing the more she looked at it. Would she feel better if she covered the red with blue paint. Yes she would.

I so wanted to take a picture of the before and after. This was so powerful and evoked such emotions. The moderator stopped me, quite brusquely. He was right of course. What a missed opportunity. I did not have time to explain why I wanted to take the picture. It represented such a momentous occasion for the participant. I really did not care if it did appeared in the blog. That was secondary. It was capturing the moment. The release in her as she covered the red with blue was palpable. We suggested to her that maybe visualising painting a situation blue would help ease the attacks. Amateur psychiatrists, one and all.

I was very upset at the missed opportunity. Janet pointed out the irony of the situation. Getting upset at a situation in an session dealing with anger.

Another participant painted the logo from the Florida Panthers. A brown panther (I have to talk to her about the colours) surrounded by yellow, black and red, nails in red and yellow, mouth in red, teeth exposed, claws raised. As angry a beast as one could ever wish for. She maintained that her anger is behind her. She is reconciled, content and moving on. She drew the panther because that was the assignment. What gets her really angry is the lack of civility in the world. No thank-you’s, and pleases. People butting in front of you without so much as a if-you-please. Aggressive drivers, people cutting people off, rude, inconsiderate, lowering our standards to the lowest common denominator. That is what really makes her angry. She got quite animated during this description. In all fairness, she is quite animated to begin with, but there was a glimmer of more. The panther was described as a protector, a beast that would defend her against the butting-inners, the callous nature of beings. She liked that image. Grrrr.

It occurred to me later as I mulled this conversation over and over in my head, that the anger is misplaced. That may be the wrong term. We don’t get angry at people butting in, or not saying thank-you, or sorry. We get upset. We are disappointed. We shake our heads. Angry? Doubt it. Is it possible that she is still angry but is repressing it? She reads this blog. I am not saying anything to offend her, but rather to further the discussion. As I have said many times, no judgments. Is the anger still inside somewhere, waiting to be acknowledged? An active sportsperson who is suddenly afflicted. Not sure how I would react in her shoes. I am not a terribly physically active person. Walking is the extent of my exercise. I would think anger would play a part. She says she is past it, and we have to take her at her word. Anger is showing up in her in places that, logically, should not be manifesting itself.

The third participant drew a dragon breathing fire. She exclaimed that her dragon does not look angry or fierce, since dragons always breathe fire. No idea why she drew this. She grew up in a house filled with anger which seemed to stop more positive elements from taking place. Makes sense. Nothing worse than rampant anger. The most curious statement she made that was not picked up on by anybody was that emotions do not have a place in an ordered society since they tend to derail things. Ordered society? This requires a definition, to say nothing of the premise itself. Maybe next week.

Her dragon was on the right side of the page facing left. It was suggested that this represents the past, and that indeed, she had put her anger behind her and was moving forward. A middle placed dragon would have represented the present, and a right looking one the future. The flying dragon may also represent the long journey home. The discussion around her painting came back to the one I mentioned at the very beginning of this post.

Letting go. It is so important to let go of things, be they negative emotions, anger toward people or events, or whatever. Peace and tranquility are a must for the cancer body. Is letting go an active or passive act? What are the steps required to get there? Acceptance and acknowledgment? Forgiveness? Forgetting? She can forgive, but not forget. I maintain that letting go is a passive act. It is accomplished after all the steps leading to it are complete. The steps are active, but the act of letting go is passive. I may have been in a minority. We talked about her capacity to let go, returning to her friend/family person whose mere mention upsets her so. Letting go of feelings of resentment toward those who she feels turned their back on her during this struggle.

Can you forgive and forget? Can you forgive without forgetting? Should you forget? Do you have to keep a vestige of the memory for future reference so the slight does not happen again. A bit like remembering history so it does not repeat itself. And we know how good we have been at that. Can you forget and still learn from past experiences? We tend to insist on remembering the bad as a point of reference, but often overlook the good. We learn from our past mistakes. Surely also from the non-mistakes.

We are constantly told to deal, forgive, forget and move on. Specially when the memory is a bad one. Seems like a natural. At the risk of offending a whole bunch of people, including some very dear relatives, we have remembered the events of the Holocaust for over 60 years. There is no denying the horrendous activities that took place, the numbers of people who have been affected, the incredible cruelty inflicted on so many people. The point of remembering the Holocaust is not the numbers of people who were killed, 6 million Jews. Over 25 million died in the war dwarfing that figure. It is surely the systemic attempt to annihilate a people, a culture.  We remember in spite of the deniers. We see pictures. Germany recently released the Holocaust files which are being or have been digitized allowing descendants to find out what happened to their ancestors. We remember.

To what end. Humanity has repeated similar actions again and again. Rwanda. Sudan. Serbia/Croatia. Congo. Uganda. Kenya. To name a few. The memory of the Holocaust has not stopped these ravages from taking place. I doubt  someone is sitting there saying, oh yeah, cannot annihilate those people, remember the Holocaust. And yet, we insist on remembering. The only country that has been truly affected by the memory are the Germans, who are still paying a price in spite of the reparations they have done. Should we not forget and let go the past? Let Germany and Germans off the hook?

My Painting:

Anger

Anger

The spoon is filled with anger being fed to the person. The cancer cells grow and multiply turning red as they grow larger. Not good. We had run out of time by the time the discussion turned to my painting.

We talked a bit about how we react to things. You always have a choice to not get angry. This does not mean you repress it. You just do not get angry. Anger escalates. My brother told me a story during his last visit. He was driving somewhere when he decided to take a break and exited at one of those roadside gas stations. He went to the washroom when this young man stormed in and started swearing at him. When asked what was wrong he exclaimed that my brother had cut him off on the highway a while back.  He threatened to beat up my brother.  Talk about road rage. My brother looked at him and said he sees one of two results from this. Either the young can go around bragging that he beat up a man over 60 years old, or he will have to explain to others how an over 60 year old man beat him up. The man calmed down somewhat and started talking to my brother about his problems. What often triggers an emotion is not the root cause of it.

I used to work with this wonderful lady who was in charge of customer service. I was amazed by her poise on the phone. Nothing rankled her. She was always calm. Until she put the customer on hold. She would bang the phone down, let go a litany of swear words. She would research the subject, and pick up the phone calm as ever to deal with the customer. She has not changed. She still deals with events in the same way. Mesmerizing.

Anger is a basic human emotions. Men and women handle it totally differently. We shy away from it. Frown on it. Write about it. What else can we do?

Went to see the oncologist yesterday with mixed results.

The last CT Scan we did was at the end of July, before the full diagnosis, and before the operation, and before the chemo, and just plain before.

Monday’s CT Scan revealed more cancer tumours and activities. This is to be expected. No treatments results in very active active cancer cells taking advantage of our largesse to promote their intent. Here we are, almost three months after the operation with more tumours, not less.

This had surprisingly little effect on me. Dr. Hedley is amazingly re-assuring and positive through all things. He went through checking me out prior to discussing the results of the test. He prodded and probed and was amazed at the excellent condition of my stomach muscles. I really have no way of judging these things, but I am apparently in better shape than we thought.

A CEA blood test was done, the results of which will be available in 10 days. I have discussed this test before, but for those of ailing memory, here is a link with an explanation. It is not a conclusive test, but it does give us an idea of the direction of the healing. We left the good doctor in good humour. He gave me a hug. I mean, what kind of a heartless doctor gives his patient a hug? Told you he was good.

His basic premise is that I am well if I am feeling well. There are good points and bad to this. I was feeling well at the beginning of July in spite of this invasion, until I felt bad. But I tend to agree with him overall. Feeling pretty good, mentally and physically. Getting stronger. Putting on weight to the point where I might have to go on a see-food diet. The general prognosis is is that I am improving and the cancer must be in full retreat. 10 days.

My voice is, as always, the barometer of my health. It is weaker than I would like it to be. But this is the end of chemo week and the start of mighty and strong week.

Addendum

We received some results from the blood test that would lead us to believe that I am doing very well indeed. The tests involved levels of

Test old value new value normal range
ALP 403 149 30 to 120
ALT 67 33 5 to 35
LD 588 257 100 to 190

The normal range is listed below. The information below has been copied from enotes.com. They provide a very comprehensive explanation of what these things are.

Results

Reference ranges vary from laboratory to laboratory and also depend upon the method used. However, normal values are generally framed by the ranges shown below. Values for enzymes are based upon measurement at 37°C.

  • ALT: 5-35 IU/L (values for the elderly may be slightly higher, and values also may be higher in men and in African-Americans).
  • AST: 0-35 IU/L.
  • ALP: 30-120 IU/LALP is higher in children, older adults and pregnant females.
  • GGT: males 2-30 U/L; females 1-24 U/L.
  • LD: 0-4 days old: 290-775 U/L; 4-10 days: 545-2000 U/L; 10 days-24 months:180-430 U/L; 24 months-12 years:110-295 U/L; 12-60 years:100-190 U/L; 60 years: >110-210 U/L.
  • Bilirubin: (Adult, elderly, and child) Total bilirubin:0.1-1.0 mg/dL; indirect bilirubin: 0.2-0.8 mg/dL; direct bilirubin: 0.0-0.3 mg/dL. (Newborn) Total bilirubin: 1-12 mg/dL. Note: critical values for adult: greater than1.2 mg/dL. Critical values for newborn (requiring immediate treatment): greater than 15 mg/dL.
  • Ammonia: 10-70 micrograms per dL (heparinized plasma). Normal values for this test vary widely, depending upon the age of the patient and the type of specimen.
  • Albumin: 3.2-5.4 g/L.

Last Thursday was the start of chemo week. Avastin was added to the mix. Another unknown, and as you all know by now, I am not a big fan if unknowns of this kind.

My brother and his wife left on Monday morning. My sister had come for the day on Sunday and left that same evening. I felt like I was on a natural high on Sunday. We even joked and laughed about my cancer. That was a a first and a very good sign. That people felt comfortable enough to laugh at this thing is way cool.

The last visit from my brother was followed by a huge emotional vacuum. This time was no different.  The high is followed by a very natural low. That was yesterday. The weakness of my voice is a dead giveaway.

Fo’ad drove me to the hospital for my CT-Scan. This is the first one since  the chemo treatments have started. The results should be telling. I am seeing the oncologist on Wednesday, so the wait is short for the results.

I had a pain in my ribcage last night right about where the liver is located. It went away by the morning and came back tonight with what appears to be a vengeance. I took a couple of Tylenol 1s. We will see if it helps. These things take about an hour to kick in.

My nurse Barb came for a visit this morning to see how I am doing. She will visit me every two weeks just to keep tabs on me. It was really nice seeing her. I somehow miss my nurses. You cannot help but want to get rid of them when they visit. Once they are gone, the story changes somewhat. It turns out the visits were nice and reassuring. Someone who looks at you and tells you how well you are doing and actually knows.

This has not been a good week so far. I went to see my supplier of bags and such, Faye. She is very sweet. We are looking at alternative brands. One of them has a locking bag. Makes sense considering my accident of the other night. We ordered samples. I went shopping for food after. Took some pictures.

Came home exhausted. It was not supposed to be this way. This is usually the first day of recovery where I show signs of strength, vim and vigor. Yet here I am totally exhausted and going to bed after I post this item. Not fair.

Tomorrow is a big day. I get to paint my picture of anger at the Art Therapy session. I already know what I am going to do. A no brainer when you have time to think. Just hope I can do my idea justice. You will see the results in the next couple of days.

And of course the oncologist.

Big day tomorrow

Fear is so debilitating. Most are such a waste of emotions.

Not having fear would ruin a good horror movie, mind. The static pages section on the right has a list of over 600 fears and their scientific terms. 600! The title of this post is fear of death and I hope the conversation leads me there. People often ask me what process I go through when writing. Simple really. I just write what comes to my head. Very little editing. I correct my typos, as much as I can. The screen is failing my aging eyes. I might re-arrange a couple of things, but in general do not spend any time re-writing any sections. Hence the hope that the conversation will eventually lead me to the title.

I grew up in Ethiopia. We were there from 1953 to 1963. There are maps of the world showing how much artificial light we generate in different parts of the world. Africa is dark.

Map Showing the Amount of Artificial Lights we Generate

Map Showing the Amount of Artificial Lights we Generate

It is dark today, and it was dark in 1953 and 1963. I was very afraid of the dark. Some nights were so dark you would be blind outside. I have always been a restless sleeper. My parents used to put dining room chairs beside my bed as I kept falling out of bed. I would not go to the bathroom at night. They would leave the bathroom window open. I was terrified of the darkness outside. Every once in a while, there would be a feral cat sitting on the window sill. All I could see was the two eyes shining ominously at me. Did I mention how terrified of cats I was as well? Not sure where I peed the first night I saw that combination in the bathroom window.

We raised chicken in Ethiopia. The feral cats would attack them regularly. My brother made a sport of shooting the cats. The locals would also participate. It was fun, I think. I had no objections. The fewer of them the less likely they would be sitting in the bathroom window waiting for me. My job was to encourage the chickens to go into the coop at nights to prevent the cats from eating them. Chicken are the dumbest animals on earth. They had to be chased into the coop every night. You would think they figure things out after a couple of weeks. But no, not these animals. No wonder we eat them. No danger of any brain disease afflicting us, since chicken do not have brains.

Janet and I went to Martha’s Vineyard for our honeymoon. It was loads of fun, highly recommended as a travel destination. We took a drive down to the beach one night. How romantic. It was a cloudy night, not a star in the sky and totally dark. I mean cannot see the nose in front of your face dark. We found our way to the beach and stood there holding hands listening to the steady rhythm of the waves lapping the shores. We stood for about five minutes when the conversation turned to the dangers of being there by yourself, and how someone could easily kill you and you would never be found. Never mind it was too dark to see anything. We talked ourselves into an inane fear and rushed back to the car racing home.You can laugh now. In fact we all laugh now when we talk about it. What an insane thought process to put yourself through.

Fear.

It paralyses you.

It defeats you.

Makes you cringe at the slightest provocation.

Fear of a project at work stops you from performing the task in the allowed time frame.

And the list goes on.

Wikipedia has a listing  for fear. Big surprise there. They also talk about fear of death. There it is, the title subject.

Are we afraid of death because we do not know what happens after? Why would that scare us? We often do not know what is going to happen after some other events in our lives. Why does death scare us so? Life after death, which I believe in, is also fraught with issues. What happens when you get to the pearly gates? Where do you fit in the new world? We are told there is progress and evolution in the next world but no time factor. How does that work? We are told that there is a connection between our current world and the next. That you reconnect with you spouse in the next world. That punishments not meted out in this world for a crime committed will be looked after in the next world.

All sorts of questions arise from this. What form, what shape, what is considered a punishable offense? What constitutes a punishment? We do not believe in heaven and hell, only life after death. Is Hitler standing behind a window watching the fun everybody else is having? Accompanied by Genghis Khan and Hannibal? Or is Genghis Khan not such a bad guy, living in a different age where values were so different from what they are now? Do we really know the difference between good and bad in order to make an intelligent decision regarding any of this?

What if you do not believe in life after death? The world as you know it ends. You are buried or cremated and that is the end of it. The only certainty in life is death. You are born, and you know that you will die. Just a question of when, where and how. Most of these you cannot control. Not believing in life after death is a release of sorts. No payment for your indiscretions, they are buried with you. What are you afraid of exactly?

We moved to Toronto in 1980. I got a job at Radio Shack as a salesman. An insurance agent came into the store and saw me as a target. There is a twist, a salesperson comes into a store to sell to another salesperson. She started the sale picth:

Do you have life insuranace?

No

What happens if you die?

I will be dead

What about your family?

They won’t be dead

Who is going to bury you?

I don’t know who will bury me. I will be dead.

Is it fair to leave that expense to your family?

I don’t know, others will assist. Look around you, any dead bodies lying around? Somehow everyone gets looked after. And anyways, I will be dead.

She walks out.

I do not fear death because I do not know what lies ahead of me. I can only fear things I know about. For instance running over a pedestrian. It could happen, specially the way I drive. That is a relative known factor. But death is so unknown. Not like you can come back and talk about it, or send a postcard. You die, you are gone. Why the fear?

The above mentioned Wikipedia article talks about people of Faith have less fear of death. The further you remove yourself from Faith, the more scared of death you are.

Some of my friends tell me I am lucky or fortunate to have this Faith that gives me comfort. Maybe. I wish I understood this better.

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