Let me clarify my thoughts. I have never viewed crying as a weakness. I cry with the best of them. The issue is that we, cancer patients, seem to cry a lot. I have written about this before. I have come to the conclusion that we cry because we are not feeling well. The weakness is not in the act of crying. but that the tears reflect the weakness of the moment.

We do not feel sorry for ourselves, or feel mistreated by the Gods, just that we do not have the strength to feel good and therefore cry. It is a sign of our health, and a good one at that. There are times that I feel that I am doing OK. Someone hugs me and tears fill my eyes. A sure indication that things are not going as well as I thought they were.

I hope this clarifies things a bit, and does not add to the confusion.

As always, thanks for the comments, keep them coming regardless of the venue.

I went back in on Tuesday morning are 8:30. The earlier the better. Takes an hour for the blood work results to make their way to the Chemo Daycare. Once approved, it takes about two hours to get the drugs ready. It pays to go in early. I went home after the blood work. No sense in hanging out there. We live about ten minutes away.

Got back to the daycare at precisely ten for my appointment. I explained to the admin person that my white blood cell count had been low and so on. Ahh, she said, right. There is a red tag on your folder which means Chemo is a go. They cannot look at my results, nor can I. Only a nurse can. And? No, cannot see a nurse until I go in since there is a red tag on my binder.

I waited an hour before deciding to go get a bite. They give you a pager. You have to stay in the building. No issues there. There is a Druxy’s in the building. I go down and get a bite. A lovely balanced diet. Fruit bowl with yogurt, and a chocolate bar. Go back up around 11:01. I know that because the admin person asked me where I had been. They paged me at 10:55 for God’s sake. What took so long. I ignored her. The nurse wanted to see me.

They made a mistake. My white blood cell count was down to 0.7. No Chemo was possible. I complained about the admin staff. The nurse suggested I complain to the hospital. She cannot do anything about it.

I was very upset at the waste of time. I could have gone home at 10:05.

I came home and wrote a letter to the customer relations person at the hospital. That conversation coming up in a separate entry.

I came home and rested. My energy came back with a vengeance on Wednesday. I am not sure how to explain my feeling when my energy returns. You feel like the walking dead while the energy is depleted. Very emotional. Cry at anything. You then wake up one morning and your energy has returned. You feel like a new person, almost jumping out of bed. New day, new person. You run around getting things done. Race against time. No rest allowed, too much to do, too little time. There is a poem in there somewhere.

You pay the price at some point when the energy is depleted. You crash and sleep hoping to recharge the batteries so you can start getting things done again. My energy level has lasted so far. Chemo is scheduled for Tuesday again. Neulasta on Thursday. See what happens. I am resting for the next couple of days.

Playing on the computer is resting for me. Hence the blog entries.

Thank you for being there.

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.

Devin and I drove Janet to work in the morning. We got to Wellspring about 30 minutes too early. We had a coffee and read the paper.

Art Therapy. I had no idea what to expect and decided to try really hard to keep an open mind. It was not difficult. Last time I had anything to do with painting or drawing was in boarding school in England. I had the dubious distinction of almost failing that class. I mean really, who “fails” at art class? There were too many other things going on in my life at the time, like surviving in an all-white school as the only coloured person. Minor issue.

The room was small with a large square boardroom table. The instructor was still setting things up after the 10AM start time. It really matters little. What else do we have to do? Places to be? The table was covered with a couple of pieces of rubber mats. The type that some people put on their dining room tables to protect the surface. I gather that it was the first time for everyone based on the reaction to the mat and the discussion regarding its fabric. This did not bode well. The mats were covered with dry paint from previous such classes. By the time the dust had settled, there were six women in the room and moi, the sole male. Perfect ratio.

About 35 years ago, in Montreal, I went out to dinner with a bunch of friends and my sister Fetneh. There were 8 of us, if I recall. The waiter kept giving me the hairy eyeball. I was starting to wonder if I knew the guy and had offended him somewhere. It suddenly occurred to me, as I looked around the table, that his look was more quizzical than hairy. He was wondering what a douche bag like me was doing with seven women. The harem, such as it was, consisted of my sister, my oldest friend Nahed Rushdy and a bunch of other platonically related people. Nahed and I grew up in Ethiopia. She pointed out to me the other day, that we have known each other since grade whatever in the 60′s. Just to say, I have been in this situation many times.

The assortment of people was varied. You have to understand that all the goings on at these sessions is strictly confidential. So you can’t just go and blab it out to everyone. You stand on notice. The lady sitting beside me also has colon cancer. Her surgery is done and she is mending. She was very sweet and gentle in her manners. She does not need chemo therapy, lucky her. We will talk more next week. I have to digress again.

I used to be a computer trainer.  I noticed at a particular point that people tend to sit in the same seats when they come back for more training. Does not matter if the training is at their location or ours. The person would come back for their second training day, be it a day, week, or month later, and make a bee-line for the seat they had occupied the last time they were there. They were also quite put out and almost disoriented if someone had beaten them to their seat. It is a very peculiar behaviour. Not sure what it means, or how you would go about studying it.

I am sure that we will all sit in the same seats next week. I might even go in a bit late to test this. The instructor set up the room. Lots of paper, bowls of paint of all the primary colours and a couple more, pails of crayons and chalk, markers of all colours. Once settled, we were given our instructions.

We are going to paint, and discuss our paintings with everyone else. No judgments, All positive. No matter that you cannot paint. Let the child within you rear its tempestuous head and take over. Relax. Cry. Put your hands in the paint if you want the tactile feel. Everything is confidential. No recriminations. We are all in the same boat. Cool.

Our first assignment: paint your name. Not necessarily literally, though that is what we all did, but what you feel your name represents. Are you happy with your name? Do you love or hate it? Does it evoke joy? Whatever. The lady next to me folded her sheet in half. These are large sheet measuring 24 by 18 inches. She was being practical since there was little room. I followed suit. I was also being practical. How could I possibly fill up that amount of space?

Some of us sat there looking pensive, trying to not look concerned over the fact that we really did not understand how you could paint your name. Most went ahead and wrote their names down in BIG letters and started to colour them in, adding more and more detail. I decided to draw my name in Persian, just to be a bit different. I can neither read nor write the Farsi language, but I can write my name. It is a complicated language, beautiful, lyrical, but complicated. I painted some grass at the bottom of the page, a tree on the right, and a giant sun above and to the left. My name was front and centre. The sun is shining on me. So many interpretations!

People revealed a bit of themselves in the paintings, which made for a very interesting session. One person drew a heart in which she drew the faces of her family. She cried when she told us what that was about, specially when she said she wants to live. Very poignant. Others added some elements of what they like to do around their names. Statements of fashion design, traveling (planes), and water. Lots of water all around. Seems water has a very calming effect on people.

One person had splotches of purple, and brown and various other colours all over the paper. It was all covered and looked a bit peculiar. Turns out it was her garden of lilac trees. Made perfect sense. You could see the garden come to life in all the splotches and stains covering the wrinkling paper.

Another drew a house with a path leading up to it. Her name was written inside in all its blazing glory.  She craved the safety of the roof over her head. She said she had no idea why she drew what she did, just came to her.

There was a fair bit of chatter, but nothing of any consequence. Strangely no one asked for an explanation of my choice of language. Devin thinks I should take up calligraphy. So I went out and bout some pens, paper and a book to see where it takes me.

The next assignment was to paint our safe place. This smacked a of of the meadow exercise in the relaxations and visualization session. Devin said I should have painted a swarm of mosquitoes. Not very safe. This one took a while. I have never really thought of a safe place. My bed? That is where I go when I am tired, or need to get away from everyone. But I would hardly call it a safe place. Specially when one of the cats decides that any time is good to lie on my stomach. What or where is a safe place? This one took a while. I watched as the others threw themselves into the project with great gusto. The person to my left, of the roof over her head fame, was also deep in thought. Another participant had closed her eyes and deep in thought. It turns out she was doing a deep breathing exercise and centering herself. Interesting concept.

So I sat there. The person to my left requested pencils to draw with. And so we sat, contemplating the safe place conundrum. My colon cancer partner had found a safe place of sorts. She watching the birds swooping in to their nests in the building across the driveway. They felt safe. She felt she had found something. I finally found mine.

Ramone Alones

The text which you can barely read says:
Nothing like a great Cuban cigar on a warm evening surrounded by friends and family enjoying the times, dinner, conversation.

My painting generated far more conversation than I expected. They wanted to know about cigars, do you inhale? What makes a cigar good? How much does a cigar cost? Do women smoke? The caption under the title: Ramon Alones reads: The ultimate Cuban cigar. 45 minutes of bliss. 45 minutes? Are you kidding me. Hence the safe place. Sit, smoke, enjoy the company and the moment.

One person drew a church, and her house, her garden, and family. Another her time at a cottage that she found peaceful under the radiant sun surrounded by water. Another drew reference to her cottage that always brings solace and peace. My colon cancer partner gave up on drawing the building across the way. Her drawing was the most moving for me. Her thinking evolved into drawing a bunch of rectangular boxes in a bit of a pelle mele from the top of the page to the bottom. Somewhere in the middle of the page, two of the boxes leaned against one another. She drew herself in the triangle that was created by the joining of the boxes. There was great emphasis on the person. She surrounded herself with more protection, dark lines that enclosed her in the space. She equated her safe place with somewhere to feel comfortable and warm, a place to make peace with yourself. I will have to spend a bit more time with her. She is proving vulnerable and terribly interesting.

This is a long post. There is more.

These paintings generated a lot of conversation. Not sure how much of it was intended or not. The instructor was content to let people speak their mind and comment. He was quiet through most of the banter. There was a great deal of respect amongst the participants. No recriminations or judgments. All talked and participated. I took a lot of notes.

How do you define a safe place? Is it internal or external? Mention was made of the people who get caught in disasters losing their homes and belongings. How distraught they are. Have they lost their safe place? Should they consider the material belongings as safe? Is it not better to internalize the safe place? That way you have with you always, taking it with you through good times and bad. Radiating from the inside out.

How do you deal with the well meaning people who surround you with the best of intentions? You keep having to explain yourself and what you are going through. People just don’t get it. They ask the same questions, over and over again. We are dealing with the pain, both physical and emotional, why don’t people understand? We are trying to remain optimistic as we travel this long journey, trying to forge a new identity, a new reason for being. Why don’t people understand? Relatives and friends, all well meaning who criticize you for having a messy house instead of pitching in to help. Why don’t they understand? Should we expect them to understand?

What expectations should we have of others? How do we get support mechanisms in place that would ease the pain? What role does religion play? Is it a panacea? Or a placebo? Giving you false hope and expectations? How does God talk to us?

We talked about making a connection with life, with the earth, digging your hands in the garden and feeling the soil.

Water was in three or four of the drawings and paintings bringing peace and tranquility to people’s souls. Water, vast, in constant motion, calming, at peace with itself.

A couple of people cried, albeit briefly, stifling back the tears and immediately apologising for it. Everyone was quick to offer them tissues. Why apologise? Of all places, this is the one where no apology is required. Don’t they know that we all cry? All the time? We apologise for all sorts of things.

I had a surprisingly good time at this session. It lasted over 2 hours. The instructor had a difficult time bringing it to an end. The group was not willing to let things go. I am looking forward to next Wednesday. Look forward to your comments.

To celebrate or not?

We celebrate every year. Make a production of it. I usually carve multiple pumpkins, some with two faces. Takes a lot of patience to carve all these faces and make them unique and scary. It is fun and well worth the effort.

The second Halloween in our current house was a big production. I bought Christmas lights, white paper table cloths, borrowed a plastic snowman from Nancy and rented a Santa costume. I laid the white table cloths down covering the front garden making it look like snow. Strung the Christmas lights across the front garden. Borrowed Devin’s ghetto blaster to blast Christmas carols through the night. Janet came home to a house lit like house on fire. I am sure you could see it from space.

As the kids showed up, I would bound out of the house yelling Merry Christmas. Scared the hell out of them until Janet and Leslie stopped me from doing that. SO I sat on the front porch with my Santa bag welcoming the children. Poor kids. They kept telling me how much they loved me, how good they were. We almost felt bad for them. The confusion in their voices was palpable.

We have gone to David Powell’s house after our kids stopped coming. Arlin and I would take Jack out and smoke our cigars. Jack is very popular. Everyone knows him. He was a Halloween machine collecting two pillowcases full of candy. We would go back to David’s for dinner and to pilfer through Jack’s pillow cases. Someone had to save him from all that candy.

Our previous house was a more communal affair. We decorated the front yard and got ready for the Halloweeners. We had drinks with our neighbours while we handed out the treats. It was a big party. Ann and Frank, Valerie and Chad were our neighbours. One big family. It was a lot of fun, no matter how cold it was. We miss that.

We made sure Devin celebrated every year. He was dressed as a giant pumpkin one  year. He wanted to God another year. A sheep. Stingray. Bloody chef. You get the idea. Lots of costumes. I would take him door to door. It was lots of fun.

All this to say that Halloween has always played a big part in our lives. A bit like chehar shambe souri (ask your Persian friends) but a lot more fun.

Halloween this year will not be the same. I do not have the energy to carve all those pumpkins. I cannot be exposed to all those kids, just in case one of them has H1N1 and does not know it yet. I cannot open and close the front door all night either. A whole bunch of no’s that add up to no Halloween this year.

We have been discussing it all week. To do or not to do. It was a go as late as this morning.

Carys, my four year old niece has a temperature. Started last night. A temperature of 39. Leslie took over some Tylenols for her to help control things a bit. Her temperature has been going up and down all day since. She heard on the radio with of our Health Officers that a child with flu symptoms right now has H1N1. Carys has H1N1. She has not been here for a while, so no danger there.

It just emphasizes the dangers of exposes myself to a while bunch of children who may (or not) have H1N1.

No Halloween this year.

I cried.

I also have a neat row of staples going down my stomach. 38 of them to be exact. Dr. Kennedy did a great job with those. Once all the tubes, staples, pipes and stuff are removed, you are left with the bag.

Janet bought a Queen CD with We Are The Champions so I could listen to it. Diana lent me a bunch of CDs to while away the hours. Nancy lent me a relaxation CD, courtesy of Jacquie. Marina got me one of those pathetic Word Search books. I have magazines and books. Lots to keep me busy. The only things I could do with ease was the relaxation CD, and the Word Search book.

I could think as the grogginess started to ease up. I could talk, mostly with Janet. And I could cry, which I did a lot. I cried when I first listened to the Queen CD. Uncontrollable. Trying to figure out why I am crying so much. Yeah, yeah, I would not be normal if I did not cry. But that is not the point. Life has changed dramatically, possibly for the worse, but why the abundance of tears? I do not feel sorry for myself. No wallowing in self pity here. Waste of time. Serves no purpose.

I do not fear death. Baha’is believe in life after death. There is continuity. No idea what form it takes, or where or whatever. None of that is important. Just that death is not the end of life. The soul carries on to the next phase. A bit like the birth of a child moving from the world of the womb to this one. And so we move from this womb to the next life.

This lack of fear removes a huge psychological problem from the equation. And change does not scare me. We have moved and changed our lives way too often for me to be scared of change. Of course, this is change on a grander scale than any I have experienced. But I am not alone in going through this. Janet and Devin are there, and as it turns out, so are a WHOLE bunch of friends and relatives in totally unexpected ways. And yet, I do feel alone a lot.

I tell people about the bag, and no one quite understands. How could they? What a concept. A bag attached to your stomach through which you go to the bathroom. You can hear the doubt in people’s voices when you talk about it. So I tend to show the bag just so everyone has a fair idea of what we are talking about. In the great scheme of things, the bag is becoming a minor issue specially in context of the bigger picture of everything else that is going on.

And yet, the tears keep coming. When people are kind. When I look at the home videos my nieces sent me. When a phone call is received from a friend out of the blue. I go through days of extreme sensitivity where the tears are closer to the surface, and other days, when they seem to be more controllable.

Janet and I had long discussions while in hospital about all this. Where is life taking us? What happens now? How much time will be spent on treatments? What does the new life look like? So many more questions. Questions, and more questions. Very few answers.

The lack of clear answers adds to the difficulty of coping with everything. We have a clear direction about where the chemo is going. Starts probably next Thursday and will last for whatever length of time is required. No end point. And that is OK. What is not OK is not knowing how the body will react. Nausea and diarrhea are a given. Or not. As is the loss of hair. My sister tells me all body hair is lost. The first reaction is contemplating the loss of hair on the head. Not such a traumatic event where men are concerned. But then you have to consider the rest of the body hair, the ones on the back, legs and arms. That becomes a little more troubling, but not too much. My sister tells me to be prepared for finding hair on the bed when you wake up.

The hair is not a big deal. I might even have a head shaving party, and invite my bald friends. My hair will grow back at the end of it all. So no worries there. What is more troubling is the body’s reaction to everything else. The weakening of the immune system, the same immune system that has saved me so many times during this whole process. The one that makes people believe I am so strong. It will get weakened and exposes you to all sorts of things. Cannot shave with a razor in case I cut myself. Or be exposed to people with a cold. What about H1N1 which has not troubled me at all. It suddenly becomes an issue. Do I walk around with a mask? Or have a mask in the house?

The oncologist said we would take a breather from chemo at some point next year. I think that might be a good time for us to go somewhere like Cuba and just absorb the sun, recharge the batteries.

This has been a bit of a rant. There will be more. Bear with me.