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.

Our friends came over for dinner last Friday night. We brought in food from Riz, always wonderful and tasty. Unfortunately, Daryl who organised the evening came down with stomach flue and could not come.  We had a great time. I monopolised Judith all night which was wonderful.

My back had started hurting in the afternoon. This is listed as a possible side effect of getting Neulasta. The pain was not so bad. I went to bed around 9, and the pain was getting worse. I took a couple of Tylenol 1s, just so I could get to sleep. Woke up every four hours to take more Tylenols. The process lasted about 30 hours. This was the most painful back pains and the strangest experience I have gone through.

At the risk of offending some of you, it felt like someone had put firecrackers up my ass. Once lit, my hips would start this uncontrollable surge rising off the chair in spasms. Janet could not stop laughing when she saw it happen. It takes about an hour for the Tylenols to kick in. In the meantime, the lower back pain had started to spread up toward the middle back. This was a bone pain as opposed to a muscle pain. Heating pads did not work. But the Tylenols did.

I woke up on Sunday morning at 4Am, about an hour late for my Tylenols. No pain. I got up and went downstairs, ate something and just reveled in a pain free life. Janet and I discussed this a bit further in the morning and wondered whether this was the Neulasta finally kicking in. I spent Sunday full of energy but tired from teh previous day. Monday confirmed that the Neulasta was finally working. Only took a week.

I spent Monday and Tuesday just doing things. I had energy. I went shopping. I did not nap in the afternoons, except for about 30 minutes around 5PM. Lasted longer in the evenings. Good times.

Wednesday started in such exciting fashion. Blood work followed by the last Art Therapy Session, which I have already covered. I went for Christmas lunch at David’s office. Did not last very long, but it was good to see everyone. Went home after for a well deserved rest.

Thursday was chemo day. I was a bit apprehensive hoping for an increased white blood cell count. I was confident that it had gone up based on my energy level. Sure enough, the count jumped from 0.9 to 8.4. We arrived at the Chemo Daycare at 8:30, and had to wait till 9:30 to be taken in. Left there all done around 12:20. I am handling the chemo a lot better than previous sessions. Next chemo is set for December 30.

In the meantime I have a tooth that has to be removed surgically. I am seeing the dental surgeon on Tuesday. They will have to decide whether the operation is possible or not, or whether there will be too much bleeding. Avastin makes bleeding a dangerous option.

Chemo tires you out. There is no other word for it. Stayed home all day Friday. Thinking of going out tomorrow afternoon.

Janet is off work till January. We might go to a matinee one day. Looking forward to that. And oh yes, we need a new vacuum cleaner. Our old one is now about 25 years old, hated and despised by all. I asked the salesman what makes a good vacuum cleaner. His answer was suction. So I bought this thing that has had amazing suction. But all good things come to an end.

Life is so exciting, no?

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

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

The good people at Wellspring allowed me to join the Art Therapy session that takes place on Wednesdays between the hours of 10 and 12.

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!

dsc_5120-web

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.

cigar

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.

Sunday night had the predictable sleep schedule. There was a slight variation. I drove Janet to work, then went back to bed. We have an appointment with the surgeon, Dr. Kennedy at 3PM for a look see at various things. I still don’t know how they can tell whether the insides are healing or not. [...]

I have to get a belt in which to carry this stupid baby bottle. You keep forgetting that you are attached and walk away only to have the bottle dangle. Nothing happens, everything is taped to my hairy chest. That is the part the nurses enjoy the most. They make sure the tape is applied [...]

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