This is the week in which I am to be strong and free from side effects. The week in which I get to do things. I made myself that promise only yesterday.

I took a heartburn pill today. Something I have not had to do since  coming home from the hospital. I feel like everything I eat is stuck in my throat. My stomach was quiet all night and most of today. I had little appetite and was scared of eating anything of substance.

I am not sure if this is a side effect of chemo or of the H1N1 vaccine. I did not get a temperature from the vaccine. The only thing that happened was a sore arm overnight. The arm is now just tender. This food thing started on Friday. Is it related to the vaccine? There is nothing in their literature that would indicate this.

I ate little. Drank the required amounts of water. Judy came over for dinner because I was not well enough to go out. She made a chicken pie which was delicious. My stomach seems to like it. It is alive finally after a day of silence.

I am disappointed. I stayed in bed all day and refused to do anything except sleep and do word searches. Read an article in Monocle magazine. Spoke with Habib briefly until the computer started acting up.

I have a beef with this computer. You can skip this paragraph if you want. I am going to rant about this thing. It is one of those Netbooks from ASUS. We elected to purchase this thing with the Solid State Drives instead of the regular drives. We bought one with a 12GB drive. It turns it shipped with 2 drives in it, a 4GB and an 8GB. That is not such a bad thing. Not great but can be managed. Except that they (ASUS) elected to put the operating system on the 4GB drive. I am now out of disk space on this thing, even though there is lots of space on the second drive. And yes, I moved anything and everything that could be redirected to the second drive. I spent all day coaxing 200MB of free space which is barely enough to make the unit usable. I will talk with Steve Lennox on Monday.

Back to my conversation with Habib. Our conversation is just warming up when Skype restarts itself stating it ran into problems with the hard drive. My video has stopped working. I reboot, restart the conversation, same thing. This is madness. Just added to the negative day.

Fetneh says I should talk to my liver on days like this to keep it calm. I did. It was not happy listening to me, I don’t think. We will talk again later.

I cleaned my room a bit. Reorganised parts of it. A lot of stuff we are not going to use daily any more can be put away, which creates more room for other stuff. Tried to keep busy and not think too much about things.

Halloween did not help. We turned off the lights, closed the blinds. I looked at the kids running around from the second floor. Sad.

This was not a good day. Judy says it was stolen from me. Tomorrow has go to be better. I am not giving it a choice.

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.

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.

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.

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 the chemo day. Strong physical being and emotional state are essential to a successful and painless experience. Since sleep and emotional state are directly related to one another, an accepted sleeping experience stood by me in the cancer ward.

Times have changed. I do not recall the level of consultation taking place when my mother was dying of cancer some 30 years ago. The level of consultation and trust that the nurses place in the patient are impressive. The nurse, a lovely lady named Sammy, from southern India, was ready to connect the Avastin drug. I had to stop her and have her consult with Dr. Hedley.

It turns out that Dr. Kennedy had not informed Dr. Hedley of her decision to delay the application of Avastin until the innards are in better shape. I figure we will wait for the CT Scan to reveal whatever it does before making a decision on Avastin.

Devin and I went to the hospital yesterday to do the blood work thingy. The Porta-Cath means that I do not have to have my veins tapped every couple of weeks. We discovered that when we did the blood work thingy two weeks ago. also turns out that it takes a couple of hours to process the vials of preciousness they extract from my poor and sorry body. Doing the blood work the previous day is highly recommended. The Porta-Cath meant that we could use the alternate blood extracting lab, located peculiarly in the Ambulance Waiting Area.

Devin and I made our way to this area which is tucked away down a nondescript corridor that could use a touch of paint amongst other things. There were no signs indicating where we should go. There is a movie in there somewhere. A door is all that gives away the possibility of the lab.

It is a very civilised affair. They smile and let you know that you are indeed in the right place. The waiting period was very short. The connection to the Porta-Cath with the all-too-familiar giant thumb tack was painless and quick. Blood extracted and you are free to go. The best gesture was leaving the thumb tack embedded for use the next day. One prick and you are done for two operations. How civilised.

Once convinced to way lay the Avastin, the other drugs were connected and all went very smoothly. Done in two and a half hours. What a difference from the previous session.

I told you last time about the clubish atmosphere. We met a couple of people who were done last time. Almost had a cup of coffee with everyone. Some of the nurses even recognise you. Not sure if that is a good thing or not.

Devin is practicing the piano as I am writing this. Brings joy to my heart, though I cannot wait for him to become a better player!

And now for the check list:

No nausea

No diarrhea

No blood on urine or stool

No allergic reactions

No temperature

Hair intact.

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. [...]

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 [...]

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 [...]

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