Another week of turmoil.

We finally made it the One of Kind Show. I was exhausted for some reason, woke up in the afternoon and insisted we go. Let us not miss this opportunity. We got there, rented and electric scooter and rolled inside. The scooter was the best thing we did. I even took my oxygen tank to emphasize the point.  We lasted about 2.5 hours at the show, then made our way home.

I was amazes at the rudeness of people regarding the use of the scooter. Some cut you off, others made comments just loud enough for you to hear, others did not get out of the way. All very interesting, and unnecessary. To make matters worse, it was a terrible show. I was standing in front of a painting at one point when another vendor showed up and the started talking about this that and another including the show itself. I stayed there for quite a while admiring the painting, but no one came to ask me if I wanted to buy it. I was not about to get out of my chair. Not the easiest thing to do. I left.

I have been knocked out for the couple of days. The doctors have reassured Janet that the show is the reason. I am eating well, and drinking not bad. One does not go from eating to dead overnight. Janet woke me up this afternoon to eat. It was very difficult for me to even open my eyes. Same thing this evening. Come down for dinner. Could barely open my eyes, so stayed in bed. Could have easily stayed asleep all night.

I woke up around 11:30, suddenly awake and lots of energy. Janet decided I should take advantage of the energy to update the blog since so many people are concerned by the lack of communication.

I must say it is a very strange feeling that I am going through. Quite scary on one level, well, on any level you can possibly imagine. Not sure where any of it is going. Janet keeps asking me what is going on. The simple answer is I am dying and all the thoughts and tribulations that go along with that. Sounds like a simple process, but get complicated really fast, and really does not explain everything. Is this a waiting game? Wake up in the morning and just sit around and wait to see what happens?

After my exceptionally brilliant piece on people visiting me, we are are finding ourselves cancelling visits. Cannot handle the conversation. We have at the very least, curtailed visits, limiting them to something we think we can handle. All very confusing to us, let alone to those wishing to grace us with the presence.

The blog is helping a lot with thinking through things. I have a visit with my psychiatrist this Friday, see how that goes. I am looking forward to it. There are a number of thoughts going through my head that are linked to the legacy post which I have promised and yet to deliver. It is coming, I promise. Have to get the thoughts in order. getting more complicated as we move forward.

The blog is getting very big, and we are running into technical issued. You may find it down sometimes. The techs are doing their best to keep it up and running. I am also trying to find a podcast from a CBC interview that talks about the fact that we shuld be preventing cancer, and not cure it since there is not cure for it. I have mentioned that many time before, but he has accreditations behind his name which makes him an authority so we have to listen to him. Yeah for accreditations.

All this to say I appear to be good. Blood pressure where it should be, blood counts where thy aught to be. We will get past this exhaustion thing as well. We are also going to try and get a handicap sticker for the car. I guess we can use the oxygen as the excuse. It will be good to have one. You get access to all the handicap parking spots, and can park just about anywhere you want. I am not driving any more. Do not trust the reflexes. I may also not be able to lift my feet to reach the brake pedals fast enough. Janet can take advantage of it.

All for now.  Good night.

As you may or may not know by now, we spent a weekend at the Fraser farm in Caledon, about an hour north of Toronto. They were not there. They gave us the key to the house. We have been there many times and are not strangers to the house.

This is not your typical farm, more of a gentleman’s farm. Nice large property, some of which has been leased to a local farmer who is raising cows. The house is spectacular, decorated with great taste. It is divided in two sections, the old original farmhouse, and the new addition that was there before the Frasers took over. The brickwork between the two section almost match. The new ones being, well, new, while the old show the ravages of time.

We have always stayed in the new section, in what is ostensibly the TV room. This is very practical, specially now, because we have our very own bathroom, a must for my condition.

I was incredibly tired for the whole weekend. Janet surmised that my white blood cell count was probably low. We had our last chemo session just 10 days after the previous one. We moved up the date of the sessions by a couple of days. I do not know why I ever doubt her judgment.  I did not think two days would make that much of a difference.

I pushed myself as I always appear to be doing. We went into Orangeville, which is a strange town, even for a country setting. A mixture of good and atrocious. Their main street is called Broadway, and it is that. Very broad. They have built a median in the middle that effectively separates one side from the other. The only places to cross is at intersections. They really should get rid of the median and let the two sides communicate. There are all kinds of possibilities there. All that is required is a little bit of vision.

We walked around town a bit. Found a delightful store selling household decorations, and jewelery and other stuff. A real mish-mash as you usually find in the country.  We were looking around and purchased a couple of items. I was flirting with the very young sales ladies. What else am I supposed to do while Janet is shopping?  I usually take pictures, but these girls flirted back.

One of them asked where we are from, and more specifically where in Toronto. Oh my, says one, I teach at the Riverdale Pilates once in a while. Good friends with one of the trainers there. Turns out the trainer is Janet’s personal trainer. Small world.

We went into town several times for groceries, or to just look around a bit more. I drove around looking for picture taking opportunities. None to be had. I also dove around the Fraser’s neighbourhood to see what there was. Lots of pictures there. Also took pictures of their barn which is going to be repaired before it collapses. Can’t have that, the cows live in the basement. You will see some of the pictures once I have looked at them a couple of thousand times.

We rested a lot. Talked, they cooked, I ate, talked some more. Watched a bit of TV, slept a lot. I am waking up really early these days, around 6:30. Not sure why, don’t really care. I can always sleep later. I wrote a couple of poems, the first of which I put on the blog. Designed a camera bag that I hope to produce. Going out this week to buy a sewing machine. Yes, I know how to use one. Watched my mother over so many years.

The weather was almost perfect. Hot in the day, specially in the sun, cool at nights. Stormy on our last day there. It was good.

My exhaustion was tiring to say the least. I was looking forward to walking a lot more. They have a large pond on the property. Always a good walk around. But not this time.

No weekend would be complete without an accident with the bag. I emptied it at around 3:00AM. Fell back asleep around 6. Woke up with start at 8:00 when my hand drifted into something gooey and wet and stinky. The bag had filled to capacity and burst at he seams. Stuff everywhere. Could not be controlled. All over the floor. All the way to the washroom where I started cleaning up while Janet cleaned up the sheets and floor and everything else. Embarrassing to have her do that. I know, that is what marriage is all about. Still, it is a messy proposition.

I tried to not let that ruin the weekend, difficult as it is. It just helps remind me of the fragility of the situation.

Overall, a good weekend. A good dry run for our trip to New York on the 20th.

How exciting is that? The Montreal Canadians were not supposed to even be in the playoffs, and here they are in a Game Seven against the best team in the league. Just goes to show how much passion and want play in overcoming challenges.

And so it goes with me. I have to use these people as inspiration. For inspiration is what drives us to excel, overcome trials and tribulations. We move from one day to the next, oblivious to what is around the corner. Almost as if in a daze, but not quite. Some more aware than others. We move in a dance with time, rarely challenged to rise above. Always making sure we survive to see another day.

A chronic conditions is supposed to serve as a wake up call. A call to action. Get up, do something, create a legacy, you do not have much time left. Not that we know exactly how much there is in the trough of life. The pressure is there nonetheless.

The problem is that while the pressure is there, the energy is lacking. Everyday brings a new adventure, a new discovery. We moved up the chemo day to free up the weekends. Two fewer days to recover from the previous chemo session. We figure that is why I am so tired. I cannot help but feel there’s more to it than that. Just two fewer days cannot result in this level of exhaustion. I mentioned in one of my previous posts how cheated I feel when my good days do not turn out as planned. This week is turning into one of those. I should not complain. I am getting a lot done in spite of everything. Just that I need to rest every so often, too often, to recoup some level of energy.

I watched the whole hockey game last night. That was a major feat. Not that I go to sleep early, just go to bed early to get away from the noise and hustle and bustle of life, such as it is. Last night was different. The Canadiens had lost a previous game when they had led 4-1 going into the third period. Here they were leading 3-0 and only 10 long minutes left in the game. They won, glory be. I love the playoffs. Such a do or die scenario. The level of the game rises to new heights, or lows if you happen to be the Washington Capitals.

Exhaustion be damned. Watch the whole thing and pay the price for it in the morning.

This too shall pass. Another week will come and the energy will be restored. Nothing to do with hospitals this week. Chemo next Tuesday.

We are going out of town this weekend. To a farm generously lent us by Heather and Neil Fraser. This will be the first out of town trip in 11 months. I am excited beyond description. Does not matter what happens. Exhausted or fine, just getting out of town is going to be amazing. I am planning all kinds of things to do there, including, of course, taking pictures. See where that goes.

The Frasers rent some of the farm to a local farmer who has some cows. Cows have calves. calves get eaten by coyotes. The calves are kept indoors to prevent that. Look forward to seeing the calves. Would love to get a picture of a coyote. We will see what dusk brings.

Thanks for listening.

We become cancer patients and are told that it is now all about us. I suspect that all chronic disease patients are told the same thing. It is a way to make us feel less guilty about our condition. We are an instant burden to those around us. And Lord knows there is a lot of guilt.

Some of us go from being full fledged contributing members of society to depending on everyone else for our daily needs. Suddenly rendered useless by the sudden waves of exhaustion that overwhelms our minds and bodies. Spending too much time in bed, with way too much time to think of our plight, which is supposed to make things easier, and often times does. Until you hear the vacuum going, that was my job. The cleaning. The cooking. All the mundane activities that you used to rue, you now want to take part of, oh so desperately.

It is all about you. Take advantage. Lie around and get better. Let others pitch in and do the work. It is probably good for them to see how much work it takes to run a house. How much work you did. Janet and I have reversed positions. She was in the main role, and I in the supporting one, making sure the laundry was done, so we never run out of underwear, and so on.

It is all about me.

I was given a present recently by a friend. Janet was not sure how I would react to it. It was a graphic novel published in 1994 called Our Cancer Year. The authors, Harvey Pekar, and Joyce Brabner, are a husband and wife team. She wrote, he was the victim, the afflicted one. He comes across as a real jerk. Why anyone would want themselves portrayed that way is beyond me. It is a bit like those shows, you know the ones, Canada’s Worst Drivers. Why would anyone in their right mind want to be on those. Hey look everyone, I am a bad driver, cheer for me.

I almost did not finish the book. The guy delayed his visit to the doctor until the tumour was very large. And he works in a hospital in the U.S., and is covered by insurance. He delays until the operation becomes more major that it should have been. A bit like not going for a regular colonoscopy when you turn 50. Not that we know ANYONE who has done that, now do we? He is then subjected to chemo treatments and all the usual stuff. He is a real jerk. At one point in the book, his wife mentions that she became an expert at crying in bed without shaking so as to wake him up.

We are so self absorbed in our own plight that we forget that others are suffering too. I remember when my mother was going through her cancer. It took her life within a year. She was always smiling making slight of her issues. We were all crying, losing sleep, wondering what the future held for her, for us. She was the matriarch. Nothing happened in the house without her say-so. She was the ruler. What would we do without her. She spent her last three weeks in the hospital. My Dad, brother and I made funeral arrangements. No sense in leaving things to the last minute. It was a bizarre experience to say the least. Baha’i rules and regulations require that the body be washed and wrapped in a certain amount of silk material in preparation for burial. Prayers are read during the process. My sisters had to do the honours. It was quite a to-do making those arrangements with the funeral parlour. We are talking about 30 years ago.

Here I am, 30 years later, going through some very similar issues as she did. Operation, a major one, followed by recuperation, then chemo. Oh that chemo. I am having a better time of it than she did. Still self-absorbed, effectively ignoring the feelings of those around me, or at the very least, paying scant attention. Asking the same questions over and over again, never remembering the answer. It is all about me after all. I am entitled to be self absorbed and forgetful.

The conversations in the Art Therapy sessions have reinforced these notions. Why do people not understand what we are going through? Why do we keep having to explain ourselves? Defend our plight? You have read about this in previous postings. Yet here we are totally oblivious to others. This appears perfectly normal and consistent with many dealing with chronic conditions. Does not make it right, just the way it is. The incessant questions for which we do not have answers, the constant struggles with our own emotions, the ups and downs that plague us daily.

People around us are suffering as well. In some ways more than us. We have a bit more control over what we are going through, believe it or not. I think it is always easier for the person with the chronic condition that for those around you. Hence the constant looks and questions from Janet whenever I make a move. The concerned look in my sister’s eyes when she is here and I make a move. The constant monitoring of my barometer like voice fluctuations. The phone calls and emails that come before and after chemo days, or oncologist visits. All are part of the new normal, the equation that will eventually pay dividends.

I have caught myself bringing the conversation back to my cancer when people dare talk about anything else while I am in the room. How could they be so insensitive? I did this several times, before noticing the trend. It disturbed me. The graphic novel added one more element to consider.

I asked Janet one night at 11PM whether she had cried a lot. She smiled and said of course. I could not talk about it any more. Just had to know before falling asleep. We talked about it the next day. She was home without me for 10 days. Lots and lots of time for crying. She cried with me in bed. She cried. I know how much my condition has affected those around me. Devin is always hanging around the house. As it turns out careful to say things that would not offend me or result in a heavy discussion. This has to end.

Judy dropped by for a visit. We talked about me for a while. I asked her what she was up to. To my great relief, she talked about herself, and her plans for the next while. It was wonderful to listen to her, to contribute in some minor ways to the conversation. The Art Therapy sessions always start with a taking of the pulse. Asking each of us how our week was. We started our assignment. I realised that through all these sessions, none of us had ever asked the moderator how his week had been. I asked him. We found out a lot about him. It helped that there were fewer people in the session. But still. No one had asked him. It is an exercise I have promised to follow through with.

Turn the conversation to others. Ask questions. Talk less about myself. There is something to be said about It is All About Me. But surely there also has to be a limit to it. It might be an evolutionary thing. You are dealing with your own issues, and at some point are more prepared to let the outside world intrude. Expand your field of vision. Take the blinders off. Bring a bit more noise in your life.

Cannot be anything but good for the soul.

© 2010 I Have Cancer Suffusion theme by Sayontan Sinha