No not from chemo. Side effects from stuff like this blog.

I am not sure what the original motivation was. Communicating with family and friends? Therapy for me? What?

The effects of the blog have been nothing short of amazing.

An acquaintance of Nancy’s wrote at the very beginning thanking me for the blog. Her aunt had cancer and withdrew from everyone for the 5 years it took to get back under control. The blog gave her a glimpse of what her aunt had gone through.

Others have expressed interesting feelings about the effect of the blog on their understanding of what dealing with this chronic condition entails.

A friend of mine, from the Art Therapy sessions put me in touch with a U.S. based site called Cancer Compass. They have articles and newsletters and links, and most importantly, blogs and letters from subscribers (free) dealing with their chronic conditions.

The only issue I have with these sites is that the U.S. treats things a lot differently than we do. People use these sites as sources of information, which is not a bad thing, except when used instead of consulting a Doctor, which costs money in the U.S.. While people are a source of information, we are also a source of misinformation.

I asked my nurses and Doctors after my operation, why I was off pain killers within 7 days of the operation. Questions from everyone seemed to indicate that this was too early. The answer is that we really do not know. Every one is different.

My reaction to chemo is another example. I have few side effects. Fatigue is one and possibly the worst.  Today was chemo day. I showed up at 10, ushered in past 11 and out of there by 2:30. They were short staffed. I was on my own. Janet had to work, Dev had his piano class. The event has become routine. Dev picked me up at the end of my session. Perfect timing. I have taken to sleeping through the session. I listen to music on my iPhone. Not the best, but not an issue since I am asleep through most of it.

The nurses ask you a host of questions before administering the treatment. The only positive answer I give them is the fatigue. No allergies, no vomiting, or anything else on the list. Almost gratifying. I watch others in the room, lying down in beds or sitting in chairs, some looking sad, others obviously debilitated by the experience. And there I am, laughing along with my nurses who could obviously use a break.

All this to say, that I went onto the Compass site and joined their community. I go on once in a while to read the posts. Takes time, which, ironically, I seem to be short of. Not as in time before dying, just time on a daily basis. But that is for another day.

I received an eMail from another subscriber of Cancer Compass. Her husband, who is a bit older than me, is going through what I am going through. Colon cancer that has metastasized onto the liver. She, the wife, is scared, as well she would be. He has just had his operation, and is having the usual reactions.

His wife and I are exchanging eMails. She keeps me up to date with what he is going through, and I offer her my experiences. On one side is the positive effects this is having on her. The other side is that my experience will not be the same as his. It helps give her an idea of what to expect, what directions things will go in, but it may not be definitive.

Did I mention they live in Denver? To which all I can say, is amazing. Here we are communicating across a continent. A bit humbling.

How many are affected by our actions, whether intended or not? I am affected by the eMails I send her. They are proving interestingly therapeutic. Going over my experiences and verbalising them again. She has access to the blog, but finds it easier to write eMails.

Yet we go through our lives impervious to the effects our actions have on others.

Any thoughts?

I am late, so very late in keeping this blog up to date. I will make this post an update of two weeks.

You have all read the Euphoria piece in which the cancer cells appear to be retreating before the shock and awe that is chemo. The spell of the good news kept me going for quite a while. The day of reckoning came when we met the oncologist, Dr. Hedley.

Ever the realist, the good doctor is not overwhelmed by the news. He tempered our expectations. One CT-Scan does not a trend make. Don’t get over excited. He was expecting positive results, maybe not as positive as the ones we got, but this is not a time for partying. This is Euphoria-reigned in.

Dr. Hedley believes that the chemo will run its course shrinking the tumours. There will come a time, however, when the tumours stop responding. We will take a break from chemo at that point and monitor the tumours on an on-going basis. Chemo will resume when the tumours decide to grow again. This will go on, basically, for the rest of my life, as long as it may be. We asked about a liver operation. The good doctor felt that the operation is unwarranted since it would be quite harsh and hard on me.

This begs the question of the severity of the operation. I just went through an 8 hour operation, and he thinks the liver operation will be severe? How bad is this operation?

It took a while for reality to set in. As things go, this is not so bad. My reaction to chemo treatments has been a bit bizarre to say the least. I have had a few side effects, a lowered white blood cell count, fatigue, and the discoloration of the skin on my hands making it look as if I need to wash them, and nose bleeds due to low platelet counts. . The white blood cell count is reversed by Neulasta. Fatigue by sleep. The discoloration by gloves. No, not really, I am not wearing gloves to cover them. They are what they are.

If this is the worst chemo can do to me, I am willing to take the chemo treatments whenever required. Chemo taken in short bursts will negate the requirement for Neulasta. That is a plus. I told them to put a zipper in when going into the first surgery. No idea why they did not listen to me.

The rest of the week went very well.  I am showing few signs of being on chemo. My appetite is fine, thank you very much. If things keep going this way, I may have to go on a diet. I still have a lot of my hair, though admittedly thinned out. Turns out I have SO MUCH hair that losing a bit of it puts me on a par with a lot of other people.  No sense going for a hair cut since it is not growing. I have to shave every two to three days instead of every day. What a relief that is. Seriously.

Fetneh came to visit. Always a pleasure. We talked, we laughed, we shopped. Tool her a high end furniture store, just for fun. No shopping trip would be complete without some fashion adventures. Off we went to Yorkdale mall. The precedent has been set. We will have to take her to a new Toronto experience every time she comes here.

Some of my days have been extremely productive. Others have been less so. The fatigue is sometimes overwhelming. I am a bit confused by all this and attempting to reason things out. I might be overdoing things when I am feeling strong and mighty and paying the price the next day. Not sure. I spent Saturday almost entirely sleeping. Friday, on the other hand was a very good day. The answers will come in due course.

I am now preparing myself for chemo week. If all goes according to plan, I should sleep through this session. Next CT-Scan is on March 8 when we will have a better idea of what is going on.

Thank you for being there, visiting, writing, commenting, praying.

I have been neglectful, as Sharon has so kindly pointed out.

Last Thursday was not a good day. As I have said many time, not sure why some days go good and others fail to impress. Devin and I went shopping at the St Lawrence Market. We were out of fruit which means I have nothing to eat. My breakfast consists of porridge and a whole bunch of fruits. It depends on what is available. Bananas, cactus pears, pears, melons, grapefruits, grapes, oranges, pomegranates. Not all in one shot of course. But I graze on this stuff all day.

We finished shopping with the purchase of one of those smoothies. I did not feel very well, and put it down to being tired. We decided to surprise Janet at her office. But first, a bite to eat is in order. We stopped at Quiznos for a sub. I had a small one and Devin bought whatever. We took our meals to Janet’s office and ate there. She decided to cut her day short and come home with us. I lay on her couch. Ate only half my sub and was not feeling good.

I have a new sleep regimen. Go to bed between 8 and 9. Take half a Lorazepam. Do a couple of Word Searches and wait for sleep to take over. I can usually tell as the eyelids start to weigh heavy and searches take longer. I usually end up turning out the lights around 10 and gratefully wait for sleep to take over. So far, it appears to work reasonably well. Every once in a while, the drug has little effect and I lay awake for longer than is reasonable. Case in point, right now.

I usually wake up between 2 and 3 to empty the colostomy bag. Nothing wakes you up faster than the 5 to 10 minutes it takes to perform that bit of thrilling business. I go down and have a snack, come back upstairs about an hour later and take the other half of the Lorazepam. The second hit is usually a lot more effective and I sleep through the rest of the night.

I find the whole drug situation a bit disquieting. There is little doubt that they are effective. I took a nausea drug this evening because I felt a bit queasy after dinner. It is taking me while to get accustomed to taking drugs whenever you feel something is amiss. I do not believe there is a risk of overdoing things, since the minimum dose works so effectively. It is still a strange feeling to be dependent on so many of these pills.

While Thursday was a disaster, Friday turned out to an amazing day. Devin, Ariela and I had lunch at the Sunset Grill where they serve an amazing crab salad. I could not finish it and we ended up taking mine home. Devin cleaned out his lumberjack breakfast.

Finally paid a visit to Wellspring where I think I will spending a fair bit of time, specially in 2010. We signed up for all sorts of things including art. Last time I took art was in school in England. There were 15 students in the art class and I had the dubious distinction f coming in 15th in the class. The teacher was very encouraging. I think I can let bygones be bygones. Enough time has lapsed for me to try my hand at this again. I will keep you posted.

I slept in quite late on Saturday morning. Shaved and showered and decided it was time to leave the sweats at home. I have been dressing in sweat pants and T-shirts since coming home from the hospital. I put on a pair of jeans and a dress shirt on this auspicious day. Another milestone. We went to the Kinsman Robinson gallery, and came home for a cup of tea. Nancy joined us.

Took a nap. Got dressed again to go to Heather Fraser to celebrate her birthday. Janet and I went out. Could not believe it. There we were driving like we were almost grown ups and allowed out for the evening. A heady experience.

Went shopping on Sunday at Canadian Tire for light bulbs. Sounds mundane and it is, unless you have not been able to do anything close to it in a while.

A good ending to the week. Which bodes well for the next week when I will need all my strength for the second chemo dose.

Can’t wait. Love the Blast.

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