Farokh

Not one to disappoint, I had to come up with a second milestone.

This has been a bad day. I am in a filthy mood. It has rained all day. It is windy and blustery and I do not feel like doing anything. I slept really badly last night.

I drive Janet to work so we can have a car. At least Dev can have the car as he goes about his business. I come home and wait for the nurse to call. This is the first milestone of the day. The nurse and I have arranged for me to take a shower just before she gets here. The deal is that I will remove all my bandages, and I mean ALL of them and take a shower naked. I know this sounds like a regular occurrence for most of you, but you have to remember that I have had bandages of one kind or another stuck to me since the operation. To say nothing of the colostomy bag.

Barb calls. I rip off all the bandages including the bag and the few remaining hairs on my stomach and take my shower. Warm water washing over the wounds is a good thing. It apparently speeds the healing process. So there I stand reveling.

Shower ends, I dry myself making sure the towel does not come in contact with the stoma which contains you know what. I lie in bed and air the stomach. I get up on a whim and decide to look at myself in the mirror. Everybody keeps joking about my six-pack. Losing 20lbs is no joke.

I look and look and look. No six-pack there. All I see are lumps and swellings. I have been told enough times by doctors and nurses, all wagging their finger at me: Don’t kid yourself, this was a major operation. But even that did not prepare me for the look of my stomach. They sure did a number on me.

I remember in biology class when we had to dissect the dead frog. You cut into the animal and a some point start removing the bowels. I remember thinking that there is no way for me to return everything into the poor frog.

And so I stood in front of the mirror. They had put everything back inside me, more or less, but not quite where everything belonged. Here I stand waiting for the parts to return to their proper locations. It looks a bit like those movies in which an alien body comes roaring out of your stomach.

Barb comes and I tell her about all the swelling. Nothing to worry about, she says, big operation, and more importantly, short recovery period. Give it time.

I stay in bed all day. Don’t want to see anyone, or talk to anyone. Make myself lunch at some point. Leslie is cleaning the house, and I cannot bear to watch. I am so powerless.

The second milestone of the day is going out for dinner. We frequent a restaurant on Bayview Avenue called Riz. Very friendly, with great food. There are six of us. They order with the understanding that I will probably not eat much. The food tends to be slightly spicy and I still smart from the memories of the Indian food. I cannot resist.

I eat my calamari, followed by some pork, szechuan shredded beef, spicy beans, rice and just about everything else. I eat well and not too slowly. I am fully prepared to pay the price overnight.

But the stomach did not rebel. I had a great night’s sleep. Bodes well for the future. We decide to go to the St Lawrence Market on Saturday morning, depending on how I feel when I wake up. We are returning, albeit slowly, to some semblance of our regular schedule.

The title is optimistic. There will be others.

Thursday is Devin’s day off. My cousin, Soheil, is here visiting to cheer me up. I decide that we should keep the car so we can drive around. And so, I drive Janet to work, along with Soheil. Then we go shopping for some food.

I have aother craving, a Subway seafood sub with all the trimmings. Soheil and Devin go out to get me the sub while I wait for the nurse. Turns out Subway does not make this any more. Something to do with health and safety. But Mr Sub has it, and they come back triumphant. Craving fulfilled.

I waited for the nurse all day. The deal is they call before coming, so you really cannot do anything until the call comes. But I got our signals crossed. A couple of weeks ago, my nurse Barbara and I had decided that she should come on Mondays, Wednesdays, and Fridays only. She cancelled Tuesdays and Thursdays. I waited in vain.

I finally went to take a nap. Yama and Lisa came to visit. Soheil came to get me after they had been waiting for about 30 minutes. What a pleasure to see them. We had a great time, at least I thought so. Talked about this and that, including the broken transmission in Yama’s VW. He is out of warranty by 79km. They wanted to charge him $8,500 to replace the unit. Can you imagine? He bargained them down to $2,500. Two weeks later, and still no car.

I had a good day in spite of the waiting. Soheil makes me very happy. We talk a lot. He wants me to write documentaries around my pictures (farokh.ca) and also include videos. He loves videos and cannot understand that I do not want to have anything to do with them. So the idea of a doc comes into play which could incorporate his favourite medium. He is funny.

But the concept of writing a doc around some of my pictures has peaked my interest. I am in the process of defining the new me after all.

The full import of the situation is slowly settling in. Hard to avoid the issue now that you have a shit-bag connected to your stomach. The word useless asshole has taken on a whole new meaning. A colostomy bag is front and centre on my stomach, a sure sign of a changed way of life.

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.

Good friend of mine. We were quite attached to one another. The separation was painful.

The Jackson-Pratt bag refers to this bulb that is attached, in my case, to the stomach area by a tube. One end of the tube is inserted in the stomach area,  the other end is attached to this bag. The bag is squeezed and plugged. Helps, I guess, that it is made of plastic. The vacuum creates the suction that drains the liquids from your recent wounds.

The nurse in the hospital would check on me regularly to empty the bag and check its colour. We were aiming for very little to drain and a clear liquid indiating that there was nothing left to drain. In my case, a bit of the opposite took place. At one point, the nurse emptied the bag, plugged it up and watched it fill up again. Did that three times. She was, to say the least,a bit bothered by that.

Dr. Kennedy decided that I should go home with the bag attached and let nature takes its course. Here we are two weeks later, and the bag has stopped draining entirely. I had the pleasure of emptying the bag two to three times a day.

Let me say that this bag was a pain from the get go. My fingers would get stuck behind the tube and inadvertently pull on it. Very painful. Then you had to attach the bag to your gown while you slept with the clip that came with it. I would have to empty it before going for a walk. The weight of the liquid in the bag made it difficult to control.

Today is the day this thing is to be removed. Not only has it stopped draining, but it is now causing pain. My guess (a correct guess as it turns out) is that the tube inside my body is now rubbing against my insides since all the liquid that held it afloat has drained.

We are ushered into a room with a bed listing at about 30degrees. I thought I was going to slide off. Took a little time for everyone to figure out the electronics. Finally lying down flat. Get a local in the stomach. Ouch!

It might help to let you all know at this point that my brother, sisters and I are all phobic about needles. We had a dog while growing up in Ethiopia. We are talking about the 50′s here. Dog dies. The powers that be think it may have had rabies and decide that the children should be treated with anti-rabies vaccines, just to be on the safe side. We get 20 injections in the stomach over 20 days. I have no physical recollection of this event, but am still phobic about needles.

So ouch it is. She waits a couple of minutes then removes the bag. More like yanks it out. I scream from the pain. Janet tells me she closed her eyes and turned her back. The pain was incredible. Lucky she did this quickly. A slow withdrawal would have been more painful. Did not feel the stitches as she sewed up the hole left behind. The community nurse would have the pleasure of removing those in a week or so.

Damn you Jackson-Pratt!

My bunkie.

A charming older gentleman from the Calabrese region of Italy. Spoke 2 words of English, which along with my two words of Italian meant instant communication and deep conversations.

Seriously. We looked at each other and shrugged at each other’s predicament, and smiled a lot.

The thing about being sick in hospital is that you tend to sleep a lot regardless of all the noise. Ricardo and I would fall asleep soon after 8:30. The visitors would have left by then, and the nurses done their rounds. Lights out. Instant sleep.

Ricardo snores. This is not a gentle purr, but rather a snore designed to wake the  dead. He snored from the time he fell asleep, to the time he woke u when the nurses came for the morning vital sign check. He woke up several times to go to the washroom, unplugging the IV machine and rolling it out with him. The snoring started as soon as he was back in bed.

You would think this would keep me awake. I guess my body was tired and exhausted. The snoring did not get in the way of my sleeping.

Ricardo had the occasional visitors. They all seemed to show up at the same time. They were all about his age, and they were as loud as you would expect a bunch of Italians to be. Except one of the loud couples were Portuguese who spoke as much Italian as I did. Somehow, they had remained friends for years and she was there talking to him all the time. I have no idea what they said to one another, but it was fun listening.

Ricardo was having some issues with his digestive system. His Doctor would come in every morning and ask him if he was in pain. “Dilores?” he would say quite loudly. Then would go one about the how soft the abdomen was. He was always accompanied by two other doctors wearing green outfits. The Doctor wore white. The ranking was obvious.

The nurse would also ask Ricardo if he was doing well or not. They would show up and ask if he had any bowel movements. He would not answer. He only responded when they asked if he had poo-poo and pee-pee. You would think the nurses would have figured this out at some point. But every day, twice a day, they would ask about the bowel movement. They always asked twice like he had not heard them the first time.

Ricardo was released the same day as I was. He gave me aa big hug before elaving, assuring me that I would be fine.

Lovely, lovely man.

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