I Have Cancer - Uncategorized

Normal Reality

Oct 292009

Every once in a while, you wake up in the morning expecting this to be a nasty dream. But there is this bag thingy hanging off your stomach to remind you of the stark reality.

We, Janet and I, have this dream often, except she has it without the bag being on her. We remind ourselves often that this has been a very short journey so far. The operation was only on September 2.

My wound nurse, Annmarie was over on Tuesday to look at the gash on my stomach from the sutures that did not hold. No gash to amuse her. I am healed. One less bandage. Another milestone.

I am done with the daily or twice a week visits from the nurses. Barb called today to try and figure out what my needs are moving forward. The only thing left for the nurses to do is to come every two weeks to disconnect me from the chemo bottle. They are not rid of me just yet.

Annmarie and I talked for a while while she filled in her report. Talked a bit about eHealth. The information the nurses complete on us remain in our possession. They are not transferred to our electronic files. A glaring gap, I think, in the information gathering process.

We talked a lot on how we should keep our sanity. There is no set rule of course. Everyone has their own method. We talked about relationships that are created with patients. How different we all are. The work load. Some of the nurses work from nine in the morning to nine at night. We talked about the need for more communications between the nurses and the hospital staff. More training. More openness. I have to invite her over for a cup of coffee one day.

One more step taken normal a more normal life.

Today was a good day.

Got my H1N1 vaccination from my family doctor, or at least the nurse. My doctor was giving a speech in Calgary. Something to do with whether extroverts or introverts get better grades or perform better. I will have to get the lowdown from her next time we meet. I have had no side effects from the vaccine. The conundrum with this is the following. One of the possible side effects of the vaccine is fever that they recommend you take Tylenol for. One of the side effects of chemo is a temperature for which you re forbidden to take Tylenol. What to do? I got the vaccine a week early so it would not interfere with chemo.

Went for a drive to Bayview Village, all by myself. This is the longest drive I have taken, and the longest I have been out of the house. It felt very good, somehow. I did not take a nap when I got home. I tried, but the phone kept ringing, so I gave up. Did some research in changing the look of this blog. Watched some TV. Not much. Still prefer quiet over noise.

Went to Chapters in Bayview Village and saw a couple of books I think I want to read. Just that is interesting. I have a book on my shelf in the bedroom that I have to read, and a couple of others downstairs. First time in three months that I felt like reading something that has nothing to do with cancer.

Devin has a date with me tomorrow. We are trying to make this a regular day for the two of us. We are going to Taps in the morning to look at shower heads, the height of excitement, I know. We are putting a shower in the bathroom on the second floor. Then lunch (shawarma), and finally a visit to the botanical gardens downtown. I think I will pass on the relaxation and visualisation session this week just to spend more time with him.

It all sounds a bit boring and every day. That, of course, is the whole point. I am attempting to get some sense of normal back in my life.

I accept that chemo week is going to be bad. Maybe that is too strong, how about not good. Chemo week starts on Thursday, with a preamble on Wednesday. It should end the Wednesday after, hence the week. No normalcy in defining the week. So there will be the occasional redefinition of things. Once chemo week is over, the more normal part of life has to start. I did say ‘has to start’. I am not giving myself a choice.

I have to start taking pictures again. Go to the movies. Eva Almos has volunteered since her schedule is more flexible, which allows us to go to a matinee. Fewer people, means less risk of catching something. More reading. More meeting people for lunch at their place rather than mine. More of anything that will make me almost forget that there is a bag hanging on my stomach.

I guess that is why the occasional cheating about normal definitions does not matter. You can never forget about this bag. The tape that binds it to your stomach is a perpetual reminder. Some level of normalcy is a must.

Visits

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Oct 282009

I am often asked if people can visit. The answer is always the same, call me before you leave home to make sure I am OK. Don’t call me the day before because I will not know how I will be doing the next day. And even then, there will be surprises. Visits are also usually short since I tire so easily. I have written about this before.

My friend Gita wrote me to say she wanted to visit today. I asked her to call me before leaving her house which she did. I was fine and gave her the green light. The situation was dramatically different by the time she showed up.

The first chemo was an unknown. I was not sleeping well at the time. The combination of the two made it hard to handle the series of events that took place.

The situation was markedly different this time around. Diarrhea was expected to hit around Monday or Tuesday, and it came right on schedule. It was expected and not traumatic. Easily handled.

We had Ethiopian food for dinner last night This is the second time I have had spicy food. The first was when my friend Judith brought over some Indian food from my favourite Indian restaurant Utsav in Yorkville. The spicy foods keeps me awake as the stomach works overtime dealing with the unexpected surprise.

I do not get stomach cramps. There are no aches or pains. The only benefit of this bag thingy hanging on me. Gas rolls through the bowels and explodes into the bag with a hissing noise. The system then growls and wheezes and makes all sorts of noises as it deals with the spicy invasion. All of which keeps me awake.

I finally went to bed at four in the morning, and as I have said before, guilt free.

I was fully ready for Gita when she was due. I was peeling a pomegranate, one of my all time favourite fruits. I find the peeling a bit therapeutic. You just cannot rush the experience. So there I am in an apron standing at the kitchen counter peeling away to make sure the pomegranate is ready for Gita.

I was almost done when I started feeling hot. Flushed. Hard breathing. It took me a bit too long to realise that I was feeling nauseous. I rushed, and I use that term loosely, upstairs to take my nausea pill. It is hard to know where to keep all these pills. Took the nausea pill and went back downstairs to wait for the effects to take hold.

I have had nausea a couple of times. I have these wonderful nausea pills that take care of things almost instantly. You just have to take them right away. Which I did not in this case. I sat downstairs, upright, and waited for it to pass. It took a while, way longer than I like. I was not fully recovered by the time Gita showed up. Jill sent me some ginger candy to suck on. They help with nausea. I took one of those as well.

We talked for a while. Devin warmed up some pizza that was in the freezer. Good times. I took a nap after she left and woke up in time for dinner.

I am going to get my H1N1 vaccination in the morning. I am looking forward to this. Here is the issue. The vaccination may result in me having a temperature for which you are supposed to take a Tylenol. But I am not supposed to take Tylenols to cover a temperature created as a chemo side effect. What to do?

Check list:

Diarrhea: gone

Nausea: gone

Temperature: none

Blood: only in my veins

Hair: intact

Anxiety

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Oct 262009

It is difficult to know what is your worst enemy. Somehow the all seem to be tied in to each other in a big conspiracy.

Sleep deprivation is probably the worst offender. It leaves you defenseless against anything else.

Anxiety comes a number of sources, the most likely of which is lack of knowledge.

Depression, well I don’t know about that one. I think I will stick with the first two for now.

I appear to have tackled the sleep thing very effectively. I do not sleep through most nights and find myself waking up and going downstairs to do something. Invariably, it means eating some fruit, reading the news on the web, watching TV and discovering that there really is nothing on, and going back to bed. We are fortunate to have a bed in the family room that no one is using for the moment. Provides a good place to lie down, toss and turn without disturbing Janet.

Anxiety is a whole different issue. The solution to anxiety, in my case, appears to be knowledge. I was anxious before the operation, though quite numb. The anxiety disappeared once the operation was done and we had a better idea of what to expect.

I was VERY anxious before the first chemo session. The anxiety was exacerbated by the lack of sleep. Janet tells me they were all very concerned over my well being and had no idea what to do to help me. That’s OK, I had no idea what to do either. On the way to the chemo session, I suggested that I would probably be better once the session was done and it became a more known entity.

The second session resulted in a day of anxiety as opposed to what happened before the first session. We are expecting the third session to be even smoother.

There seems to be no end of items to add to your anxiety though. The H1N1 vaccine is the latest. I am definitely on the list of people who should get it. There are side effects, or potential side effects such as fever. I have been told to get the virus as close to the next chemo session as possible. Something to do with the levels of my platelets. I am not allowed to take Tylenols to reduce temperatures that are created from having chemo. I have to go to the hospital if my temperature reaches 38. How do you reconcile this?

My third chemo session is to take place next week. Followed about a week later with a CT Scan to study the effectiveness of the treatment. And that is where the anxiety starts, both before the scan, and after, to the time where we see Dr. Hedley for the results. Janet and I discussed that this morning and we are attempting to come up with plan to do something to reduce the amount of anxiety that we feel certain will take place.

My brother intends to visit me in the next couple of weeks. That will distract me for while and reduce the anxiety levels. My sister also intends to visit at the same time. The risk, though, is a huge increase of pent up anxiety when they leave. Enough to make you scream and rail at the sky’s.

This too shall pass. We will figure something out.

Guilt Free Sleep

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Oct 252009

I came up with an interesting concept last week. Guilt Free Sleep.

We have been conditioned to sleep at night. We feel guilty if we don’t. We feel as if we have not slept after a restless night. I am not sure why this is. But a lot of people have trouble sleeping at night. You would think there would be less guit associated with it.

Guilt Free Sleep means that you can sleep anytime you can. Not sleeping through the night becomes a non-issue. Don’t toss and turn. Get of bed and do something. In my case, the blog gets updated, I read the news online, eat something, and eventually make my way back to bed, usually within an hour or so. I don’t feel bad about not being able to sleep. No frustration. Just get out of bed and do something.

I, of course, have the luxury of being able to sleep at any time of day or night. In spite of that, a strange thing happened when I made the decision to move forward with Guilt Free Sleep. I slept through the night with no drugs. I then slept through the next few nights as well. In fact through every night. I wake up every couple of hours to pee. But that is the norm considering how much water I have to drink. But I fall asleep as soon as I go back to bed.

I am not sure why this is happening. No complaints, mind. It is a mystery.

I tried to sleep this afternoon and failed. But resting for half an hour rejuvenated me.

The result of sleeping is that I am feeling much better and am better able to handle the second chemo treatment. No side effects so far It is still early, though. The side effects showed up after the 4th or 5th day. I am ready for whatever.

Inner Strength

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Oct 232009

One of the recurring themes is where my inner strength to cope with this is coming from. It is a good question, the answer to which has eluded me.

I attended a Relaxation and Visualisation session at Wellspring this afternoon. There were six of us in the room at various stages of the journey. The session was split into three sections, relaxation, open discussion, and visualisation.

The subject of journaling came up. Two people mentioned that they were journaling. I mentioned that I am blogging, a remark which was met with some silence followed by comments of not having a computer, or being computer illiterate. Journaling is a private affair, while this blog lays all bare.

I made a decision very early on to open this blog. As I have indicated in past entries, the results have been amazing in so many ways. I am truly astounded at the responses I am getting.

One of these comes from the very eloquent Sharon Singer just prior to my second chemo session in which she reminded me of all the people who are holding me during this process.

Janet mentioned in a conversation that she believes all this support results in a human positive energy current that is a web of energy created by all the people who are praying and thinking and talking about you. This came out in a conversation with one of her co-workers whose mother had cancer. That whatever happens outside is as important as what happens inside.

During this afternoon’s session, I was surprised at what appears to me a dearth of support for the other participants. This may be on purpose of course, since people tend to remove themselves from society. A huge quest for privacy.

I am now convinced that a huge part if the inner strength, such as it is, that I am exhibiting is the result of all the support I am getting from everyone, for which, I am eternally grateful.

Fighting Cancer

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Oct 222009

I apologise for this entry, but I do not seem to be able to let go of this thought. Maybe because I have not found a satisfactory solution to it. This entry can be blamed on Lelsie who engaged me in a wide ranging and rambling discussion while I was trying to sleep. The trouble [...]

Chemo Day: session 2

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Oct 222009

The jury is out on the sleep resolution taken last night. Having said that, I slept quite well, if sporadically. But in the new spirit of any sleep is a good sleep, I accepted the vagaries of the night and woke up at some point in the morning in fine spirits. This boded well for [...]

Emotions are raw

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Oct 222009

The night before chemo, and the emotions are running amok. Not much to be done but try to keep them in check and move forward. I have decided to give up on the sleep problem. I will sleep whenever the urge hits. That is all there is to do. No guilt, and no attempt to [...]

The Globe & Mail

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Oct 202009

Margaret Wente wrote a charming article in the Globe & Mail on the subject of breast cancer. More to the point, on fighting, conquering and surviving cancer. I have already made my opinions known on this topic, and this article only confirms me in what I wrote. Breast Cancer is a very physical presentation of [...]

Coming to terms with sleep

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Oct 202009

Sunday night had the predictable sleep schedule. There was a slight variation. I drove Janet to work, then went back to bed. We have an appointment with the surgeon, Dr. Kennedy at 3PM for a look see at various things. I still don’t know how they can tell whether the insides are healing or not. [...]

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Normal Reality

Visits

Anxiety

Guilt Free Sleep

Inner Strength

Fighting Cancer

Chemo Day: session 2

Emotions are raw

The Globe & Mail

Coming to terms with sleep

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