Farokh

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 to the hairiest part. Removing the tape then becomes kinda fun. At least for them.

We have no idea how this works. The baby bottle contains a soft plastic bottle that contains the chemo. We looked at the bottle on Friday to see if it was working, and could not tell. The soft plastic container was still full. Turns out that the soft plastic container shrinks as it empties. The baby bottle has graduated lines on it as a guide the shrinking of the soft container. By Saturday morning, the thing was pretty empty.

We kept looking out for signs of anything. Nausea, exhaustion, dehydration, anything that would reflect something negative going on. But all was fine, except I am very tired. Part of it is the lack of sleep, but a lot of it is the chemo gradually working its magic.

Nurse calls on Saturday, around noon. She will be here in 15 minutes to disconnect. I forget to ask her name and she does not volunteer one. They all call and identify themselves as nurse, nothing else. Once they know you, its a bit different. So I assumed this was a new nurse.

Door bell rings, and it is Natalie, my very first nurse. How delightful! She is very encouraging. She wanted to surprise me, and elected to not identify herself. There will have to be a price paid for that. She remarks on the huge progress I have made, which means a lot since she was the first one of the nurses to see me and has not seen me since.

The disconnection ritual is almost as elaborate as the connection. Out comes the envelope that contains the gloves. Out come all the syringes containing God knows what that will be used to flush out my system. Then the gloves go on and the ritual starts. Bottle is disconnected and discarded in a container that has been provided for this purpose. The syringes are applied next including the blood thinner. Finally, the porta-cath is disconnected, very quickly. No pain there. The needle looks like a giant, very thin, very sharp thumb tack. Everything goes into the disposal container.

What a relief!

Natalie also looks after my wounds. She is so sweet. We have a lovely conversation and she leaves. On to her next conquest.

I am exhausted, but still no sleep. This is getting tedious. I take a full Gravol in the evening and wait for the drowsiness to set in. No luck. I am wide awake and remain so for most of the night. I get a total of 4 hours of sleep and wake up on Sunday morning in a very irritated mood.

Sunday is Thanksgiving and dinner promises to be amazing. Judy is bringing the Mennonite pasture raised turkey. Janet is providing the vegetables which she and Leslie have been cooking since Friday at a very leisurely pace.

Janet and I go shopping. We are looking for a chest of drawers of some sort to hold all the medication, syringes, and colostomy supplies. They are all sitting in boxes on the floor in the bedroom. A bit of a mess. we don’t find anything, but one store they will make something for us on spec. I will draw it out and measure it and see what happens.

I try to sleep in the afternoon so I can participate in the festivities. My stomach is playing an number. Lots of gas and discharge. I can feel the stuff rolling inside me finding its way out. This is not comfortable. Sleep eludes me though I am, again, constantly, unavoidably tired.

We celebrate Thanksgiving on Sunday evening. My sister, Fetneh calls in the morning and we have a long chat. I tell her about the planned dinner and she wants to know why she is not invited.  Hop on a plane, I say, simple. The bed is made, and you know your way around.

She does. What an amazing surprise to have her join us even if it is for a day. I am thrilled.

Dinner was amazing. We have pictures, They will be posted as soon as I get around to the recipe page. I ate like a king but did not overdo it. Very worried about my stomach. Took a nausea pill just to be on the safe side.

Went to bed at 9. Fell asleep only to wake up an hour later. Did a Word Search page and went back to sleep. Woke up at 4:30. Feeling much better this morning

Today was a day of staying home taking stock of the body.

As I said earlier, everything has a new meaning. Are those stomach cramps? Or just gas? Am I having diarrhea? Or headed for constipation? While these sound like diametrically opposite directions, it is really hard to tell at times.

I barely slept last night, which meant spending a bit of time in bed today trying to make up for things.

And taking stock.  Not being an alarmist. At one point, I thought my unit had come unplugged. I moved in bed and felt a sharp pain. I yelled for Janet to come up. She did not hear me. I used my cell to phone home and yelled at her to come up. She was breathless when she got to the bedroom. I do not have a clear view of my upper chest, and since I thought I was unplugged, did not dare move.

False alarm. The tubes had come undone, not from my Porta-Cath, but from the tape that held them fast to my chest, hence the sharp pain. It took a while to calm down from that one.

The major things to look out for are diarrhea, nausea, and mouth sores. Oh yeah, also keep away from sharp objects. No kissing, no sharing of glasses or utensils, or tasting food from other plates. I am buying a bubble.

Janet tells me the nurse at the cancer clinic was a tad alarmed when Janet said something about going to a restaurant for dinner. With all those other people around just waiting to infect you? I am going to be one of those people who walks around wearing a mask.

Can’t see it, somehow.

I am a Baha’i. Not as active as I could be but a Baha’ i nonetheless.

As such, we believe in God, and prayers. I wrote my brother at some point saying that I do fnd it peculiar that we take solace in praying to God for healing and protection when He is the one who put us in this predicament in the first place.

I have received a lot of eMails from friends and relatives in support. All are wonderful and extremely welcome. Those who are aware of my religious convictions, and have one of their own remember me in their prayers. Others remember me in their thoughts.

I find the wordage interesting. Talking about religion has become so taboo, which makes me sad. We are more prepared to talk about Freud and Jung than we are to talk about religion.

And yet it is religion, warts and all, that has had a greater influence on our lives and laws.

Your prayers and thoughts are working overtime. Keep them coming.

We showed up at 2:30 to a roomful of people waiting. Turns out that they had 120 people in for treatments as opposed to the usual number which is a lot lower. Interestingly, they provide you with pagers if you want to go for a walk or something.

We were called in around 4, and prepped for the plug in. Sherron, the nurse, was flitting back and forth between the myriad of patients. All the beds and chairs were full. She finally settled on looking after me. She was quite delightful, if overworked.

She opens a large enveloppe and places it on the table next to me. In it are a set of latex gloves. She then opens a bunnch of other stuff, needles, and whatevers and empties the contents onto the open enveloppe. She washes her hands and puts on the latex gloves, at which point, she can not touch anything. She is now working in a steryle environment. A needle is pushed into the Porta-Cath and the intravenous bags are connected to it.It was all very quick.

Turns out that the bags contained saline solution to flush the system. Soon after though, the first of the drugs was connected to the system. The combination is Irinotecan and Leucovorin. The latter is used to “increase the activity of the anticancer drug F5-Fluorouracil”. Now you know, so stop complaining.

Irinotecan, pronouced IRRITANT, is more complicated. OK, so it is not pronounced irritant though you gotta admit it sounds better than the real pronunciation.

What taking these drugs pointed out is that we now have to be vigilant about everything. Nothing is normal. I started breaking out in a sweat. I said to Janet, is it me, or is hot in here? The nurse comes by and I ask her the same question. Are you sweating, she asks? Yeah, kinda. That is one of the side effects of the Irritant. As are stomach cramps. Is that I am also dizzy? OK, time for an injection to stop the coming nausea and all this stuff that is happening.

From now on, everything matters. We have to watch out for, and in no special order, diarrhea, mouth sores, stomach cramps, excessive urinating, high temperatures, wheezing, difficulty breathing, skin rashes. I am not sure I have left anything out, or that I can add anything to the list either. How about hiccups?

We have to keep baking soda near every sink. I have to take a rinse before and after every meal. After brushing my teeth with a soft toothbrush.

They sent us home after connecting me to the F5 bottle wihich lookks dangerously like a baby bottle. So I am wired yet again like a borg. It is going to make sleeping interesting. Trying Gravol tonight to make me drowsy. I cannot exactly roll around or anything. Only two nights. Only two nights. The community nurse is coming on Saturday to unplug me and remove all the wires. No showers till then.

No sharp objects either. A cut is not a good thing.

As expected, the anxiousness of the past few days is history, now that we are in the centre of it all. Time to move forward and start meditation classes and whatever else I can do to make this easier.

Just for the record, I have been offered pot from just about everybody. At this rate, I could open my own business. One friend said I should under no circumstance do Canadian pot since it will probably kill me. So far, no inclination to go in that direction, though I do thank everyone for their generosity.

I dislike the term Cancer survivor. I know I am going against the grain here. But it sounds so defeatist. You survived. And what happens when the cancer returns? You have to come to terms with it again, at the end of which, you will again claim survival.

We survive tsunamis, and while cancer can be compared to some sort of tsunami that goes on inside the self, I would think that we should not be happy with mere survival.

Before the operation, Janet and I decided we should use the term conqueror. But I am not happy with that either.

One of the last things the book AntiCancer points out is that we should not use the term fight to describe our relationship with cancer. I thought about that for a while. It makes sense. If we all have cancer in our bodies, then what are we fighting? Our own bodies? Does not make sense. Specially if one of the cancer helpers is stress. Fighting creates stress. Fighting cancer which is thriving in my body therefore, increases my stress which only helps the cancer.

By no means do I prescribe pacifism or a laissez-faire attitude. But fighting is surely the wrong way to think.

Cancer survivor, or conqueror are both terminologies of war or a warlike mind. Neither is healthy as a mind set in the best of circumstances, let alone when dealing with cancer.

Our whole system is based on a contrarian nature. We are fighting all the time, whether it is the weather, as in fight the snow storm, or fight the cop who is giving you a ticket. We fight the system. The boss. The partner. The taxman. The court system is based on two parties fighting one another. None of it does anybody any good. More would be achieved through cooperation.

In all these situations, you are fighting something external to you. In the case of cancer, you are fighting something internal. You are fighting yourself.

Peace and harmony should be the goal. Bring harmony to the body and mind. Bring peace to your spirit or soul. Meditate. Pray. Sing songs. Do whatever it takes, but don’t fight.

We do need a statement that would let people know that we have had cancer, or still have it. A statement that makes us feel positive about our condition. We have to be vigilant and lead a life style that will help prevent its spread or return. Given that vigilence, we are not survivors or conquerors.

What are we then?

My opiate naive body reacts to yet another drug. Half a pill is all I am supposed to take, and it is all I took. About an hour before going to sleep. I decided to also listen to Jacquie Gardner’s meditation CD on mindful breathing. It helped me a lot in the hospital. My leg [...]

The charming Dr. David Hedley is so reassuring and positive. We were there last Wednesday to see when the chemo would start. It is official, it starts tomorrow. Every one is so supportive. But truth be told, no one really knows what to expect. Everyone is different, and reacts differently. I guess future posts will [...]

Wake up on Saturday morning feeling quite well in spite of the excesses of the previous night. We decide to go to the market. Janet goes to her pilates class first. I drive. We arrive at the market. Put in coins for an hour. Normally ample time to get all our shopping done with time [...]

The most oft asked question. Whether in person, or eMail, or whatever. I cannot make a move in the house without the question being asked. I don’t even have to move off the couch. Just lie there and change my position, or close my eyes, and the question is popped. I get off the couch [...]

I was on my way to the bedroom, and stopped to say so to Janet who was watching her favourite soap on the TV. The Young and the Restless. You can all call and make fun of her later. Victor, who must now be close to 195 years old, was lying in a hospital bed [...]

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