Cancer creates such wonderful opportunities. Bi-weekly visits to the Chemo Daycare, the side effects of all the treatments, the incredible amount of information you have to sift through to get the an inkling of what to expect.

The other side is the amazing support of friends and relatives. The good side.

We spent last weekend visiting friends and taking full advantage of their hospitality. Saturday was spent on the shores of Lake Simcoe. Janet’s cousin Deena, rents a cottage on Lake Simcoe every year. We spend a day visiting. Her brother Bryan and family come up as well, as does Eva. All good making for a small family get together. I had a good chat with David Margolese whose company I always enjoy.

We spent Sunday and Monday at the Fraser farm taking full advantage of the company and space. The Frasers were all there, including the delectable and always charming Ceilidh.

Heather Fraser is doing some very interesting work in all kinds of places. We talked (again) about the work of one of her friends. A Dr. Robert Buckman. He, the Doctor, theorizes that we are better off treating cancer by slow doses of Chemo instead of the current methods of bombarding the body with a huge dose of the drugs. The theory is that the cancer cells start dying when bombarded, but soon retreat, in effect removing the threat. The magic happens once we stop treating the body to the cancer drugs. At this point the cancer cells return in full force attacking the body with renewed viguour.

The slow treatment allows the body to be treated with low doses of the Chemo drugs, in effect fooling the cancer cells into thinking nothing is happening, that they are not under attack. This treatment lulls the cancer cells allowing for a more prolonged attack. The current trials have been done on breast cancer patients. The treatments are called DalCM-P. Goolge it, or read this article. I have an appointment with Dr. Buckman this coming Thursday.

I have started my Chemo vacation in a very slow mode. I have been away from my computer for a few days, which is very unusual for me. I have a lot of projects on the go, but find myself in some sort of a limbo state. Still trying to come to terms with all the unsaid words about why we are on vacation. I am eternally positive in my outlook, yet cannot help but wonder about the future.

People insist on telling me that they could die early when they get hit by a bus. I finally found a link that talks about the possibilities of ending your life with said method. As my friend Stone remarked, it is not a competition. If people insist on getting hit by a bus, they are more than welcome to go before me.

I am also receiving information about alternative treatments. More specifically, two people have written me with information on Y-90, an isotope based treatment directed at liver cancer. It is also used for treating metastasized cancer that are now affecting the liver. Items for discussion with Dr. Buckman.

I have not been interested with the type of cancer that is afflicting me until now. The rare occasion when the question has come up has resulted in me answering with something to the effect that I have the type of cancer that eventually kills you. A lot of the remedies I am reading on the web refer to very specific types of cancer that are affected by the treatments. It might be beneficial for me to know what type of cancer I do have to make sense of the articles I am reading.

The amount of information is mind blowing and very confusing. Following the idea that each body is different and reacts differently to everything adds to the confusion. There are cases of people who have been removed from treatments that have survived. People given 6 months who have lived for a lot longer. The comments of people who have tried certain remedies and are waxing poetic about it can also be misleading. Are they genuine? What was their affliction? None of it is corroborated with statements from reputable hospitals or clinics or doctors. We will believe anything that we think will cure us, however absurd it may sound.

How to differentiate between the absurd and the items that make more sense. Does the guy who claims that eating hot peppers on bread with garlic for two weeks make sense? A pepper based diet will rid you of cancer in two weeks he says. That diet will also be rid of me in less time. He just might be right though. Do I throw caution to the wind and attempt his remedy? The temptation is there, going against all common sense.

The next few weeks will see me working on a few projects. I will attempt to make my camera bag. Finish at least one of the two web sites I am working on. Maybe render my new kitchen to paper, as well as the new design for the back yard. All these things take time and concentration. I ams till sleeping in the afternoons. For longer periods than before the vacation. These get in the way of the projects. Do as the body tells.

Time to see the psychologist.

Thank you for listening. Thank you for your thoughts, support, and prayers.

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.

Here we are a full four months after the operation. Is it time to reflect yet on what has happened?

We (my family) are constantly amazed how we humans adapt to whatever is thrown at us. Whenever you dare think things are really bad, you come across a woman without a nose.  But adapt we do, and reflection is part of that.

I grew up traveling and being displaced a lot. This did not appear to be a major issue until people starting pointing out small things, like culture shock and the down side of displacement. Other effects are less obvious. An incredible desire to protect yourself from everyone. Displacement creates a lot of anxiety. You keep having to prove yourself over and over again. At least, you think you do, and therefore attempt to do so. You become very insecure, whether you show it or not. In some cases, like when you are the only coloured person in an all white boarding school in the UK, other problems arise and existing issues are exacerbated.

I tell people that I was a really dumb boy. Stayed dumb for years. Oblivious to what was going on around me. Almost insensitive. I think, upon reflection, that I was not so much dumb, as removed from what was going on. The protection mechanism coming in full force. You react very slowly or not at all to events. Friends are hard to come by, not because people are not friendly, but because you are in some major ways, shut down. You fail to notice overtures. You behave in strange and unpredictable ways insofar as you are the stranger in the room unaware of some of the cultural differences that, in hindsight, were shining like beacons on a hill. I do not have examples, but I know they were there. One of the results was not being invited to parties, for instance.

Getting cancer has some of its own unsettling effects on your body and mind. To say the least. With one major difference. This time, the effects are somewhat mitigated by the fact that you have had a life, a marriage, new friends, work. The stranger in the room this time, is the cancer. A very unwelcome stranger that seems incapable of taking a hint. Definitely not invited to the party. Why does it keep hanging around?

Your past issues are held at bay for now. They seem so unimportant. You have to deal with the uninvited guest. So many of my friends have remarked on my being a lot more open, more receptive, calmer. This has not been a conscious decision, or something I worked on tirelessly for a few years under the watchful eye of a therapist. It just happened because you no longer have the energy to devote to being guarded, or defensive, or wary, or whatever your personality displayed at the time. You are way too busy wondering about the whys and wherefores of your current dilemma.

I am a lot more short tempered than I have ever been. I know I have mentioned this before. I thought it would be a phase. Not so lucky. I have no patience left. My tone shows it. Janet and I were shopping at Chapters (book store) the other day. This guy was paying for his books, but the stroller he had with him was blocking the way. I have no idea why people do this. He is standing at the cash, while the stroller is blocking the path behind him. I said: Excuse me do you mind moving your stroller. He gave me this look that translates to: what is your problem? I think even Janet was a bit surprised. I realised that my tone had been quite sharp. I was miffed that he had the temerity to block the passage. How minor an issue, and yet so large and prominent.

Next week is the start of two programs at Wellspring, Brain Fog, and Q-Chong. Looking forward to it.

Tomorrow is CT-Scan day. We will have the results hopefully by Monday when we see Dr. Kennedy, my surgeon. This will be the first time we will know for sure whether the chemo is working or not. I have no reason to assume it is not. I am in generally good health, positive, strong and mighty, as it were. The Neulasta helps when it decided to kick in. I do not have a cold, or any other infection. Small signs of the effects of chemo are there for those who are interested. Thinning hair, low platelets that result in nose bleeds. Nothing serious, just something to be aware of. Yet, I am a bit anxious. CT-Scans are pretty innocuous affairs. They cannot use the Porta-Cath and have to insert a needle to feed me the poison. That is the worst part, the needle. The rest of the scan is a quick and smooth event. That damn needle. There is apparently a new Porta-Cath coming to Canada that will allow them to use it for CT-Scans as well. I am hoping they will replace mine. The 90 minute operation is a no-brainer.

It’s all about me now. Life has never been all about me. It has always been about others with me playing a supporting role. But it is all about me now. Not necessarily because people love me all the more, but because they have little choice in the matter. And I feel guilty about it. All the time.

Guilt is everywhere. We feel guilty about just about everything. It is all consuming.  Paralyzing. It makes us do things and behave in ways that would not happen if we did not feel guilty. What I saying here is not new.

I watch as people wait on me hand and foot. I am often too tired to do anything about it. I go to bed at 8 while others stay up and clean the kitchen.

I am not allowed to vacuum because of the weight of the vacuum ceaner.

I can go shopping, but cannot carry anything over 10lbs. Too much strain on the stomach, more to the point to the rearranged pieces in the stomach.

I can tidy things up, but only to a point.

Mostly I lie around and watch others do things for me, around me.

And guilt is the most destructive feeling I have within me at these moments. I am putting people through a nightmare, and am powerless to take them out of it. The doctors and nurses all emphasize that this is all about me. I should not feel guilty. Go to bed when you are tired. Don’t feel guilty. It is all about me.

But I do feel guilty.

The situation is slowly changing. I am getting a lot stronger. I am driving the car and going out a lot more by myself. This is all in my good week of course. I emptied the dishwasher the other day, and am starting to do it more often. Seminal moments. I am also starting to fill it up. Life is getting better. I am a bit nervous around knives. I am told that the chemo makes you more prone to bleeding badly when you cut yourself. I am very careful around the sink.

But the guilt comes back in the chemo week when I am too tired to do anything. It is a very negative feeling. I have attempted to lead as guilt free a life as possible. Things happen. Deal with it. Apologize. Talk about it. Move on. Do not dwell on things. It may take me a while to formulate my thoughts and think through the process. Don’t let negative thoughts linger. Deal. Move on.

This journey has created all kinds of complications. Some obvious. But guilt was unexpected. Guilt over not being to do something you have done all the time. Specially when you appear healthy. But you are not.  At least not all the time. Somehow, you fail to let the good weeks make up for the bad weeks. The two should balance one another. They don’t.

Guilt is a terrible thing.

© 2010 I Have Cancer Suffusion theme by Sayontan Sinha