Last week was bad.

Slept badly in spite of not feeling guilty about it.

A whole bunch of side effects, which we believe to be from Avastin. My skin has felt hot all week. No temperature or nausea or or feeling hot or anything that is usually associated with hot skin. Just very hot skin. Janet keeps kissing my forehead. I am on to her. She is not kissing me out of love, just wants to make sure I do not have temperature. Faker. Though I suppose that is a measure of love.

We finally bought the shower head you keep hearing about. Drove out into the hinterland that is the Greater Toronto Area, a store run by Iranians. This is as fun as it gets. The better part is making our way to an Iranian store called Tavazo to buy Iranian nuts and stuff. The best pistachios are the ones from Iran. There is no argument there. NONE! We bought a bunch of those, and mixed nuts which include a generous helping of Iranian raisins, and dried mulberries.

My father used to eat the raisins to thin his blood. I have no idea if it worked or not, or how much of these things you have to consume, but he swore by them. Not an issue for me, his swearing by them, I love those raisins. Love raisins in general, but those are particularly good. We lived in Iran between 1963 and 1965. I remember going to the country where we were offered fresh mulberries. These are nothing like the ones that fall off trees here. First of all, I remember these trees as being huge. Whether that was a reflection of my short height, I am not sure. The workers would place huge white sheets at the foot of the tree. A bunch would then climb into the tree and start shaking it releasing all the mulberries. These are almost white in colour, and very sticky. And delicious. You had to eat them with a spoon. It was love at first taste.

We buy the fruit here in a dry state. Not as delicious, but a wonderful second best. They tend to dry up, which is easily rectified with a slice of apple added to the dried mulberries. Keep the lot in a plastic for a couple of days, and you get wonderful moist mulberries. Unless you are my brother who appears to like them dry. No understanding people.

Back to me, which is what this is all about.

The past week was marred by periods of extreme exhaustion, poor humour, and a general feeling of being fed up with the whole thing. Judy tells me I have to brace myself for about 18 months of this sort of stuff. Counting the months down to month 19. We have just finished month 1. Sigh.

We went for dinner at Judy and Arlin’s house on Saturday night. I sent most of the time lying on the couch, and we were there for only 2 hours. Sunday was like a breath of fresh air. Not sure how this all happens. Dying one night, up and at them the next morning. But there we were taking a drive to the country to see Ann and Frank who fed us a fabulous lunch and apple pie. Ann is an amazing cook and baker. I drove out there, and more importantly, felt up to driving back. The trip takes between 45 minutes and 1 hour. Not too shabby.

I am seeing Dr. Kennedy, my surgeon, this afternoon. I am expecting a clean bill of health, specially after the positiveness of Dr. Hedley. You can read all about the amazing Dr. Hedley here. She better not say anything about my hair. Yes, it is still all there. Though my scalp is sensitive to the touch, and I am shedding some hair, but no clumps coming out yet. I am still thinking of having a party at my hairdresser’s. I should maybe talk to him before sending out any invitations.

I tested a new bag this weekend. I will reserve that for its own post. It deserves it. Strange technology, this bag thing. Harder than it looks at first sight. Or second.

Talked to a lot of people over the past few days, all of whom are reticent to commenting on this blog. Apparently, some current commentators are just to insightful. But that is the whole point of the comments. Some insight, some humour. No observation is too slight.

I am glad I am doing better as we head into chemo week. I was dreading going into it feeling the way I did on Saturday.

Felling strong and mighty.

Hair mostly intact.

Onward and upwards.

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

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