I Have Cancer

No Chemo

Nov 092009

No chemo last week. I now have the pleasure f an extended good week. This makes up for the days H1N1 stole from me.

I went to the blood clinic as usual last Wednesday after the Art Therapy session. Devin had to be at work by 3:00. We decided to give the clinic a try. We wold leave if they were too busy. The process from parking the car, giving blood, and getting back to the car was 20 minutes. This included a chat with the lovely nurse who, it turns out, has breast cancer. We had a long conversation. Very cool.

She left the pin and tubes in my Porta-Cath, just like the previous time. This is truly the best way to give blood.

I picked up Janet at her office the next day and we made our way to the PMH Chem Daycare. As lovely a name for this activity as any. We asked whether there would be a delay or not. Time enough for us to get a cup of something and do whatever else. The gentleman behind the counter let us know that we had about an hour because my drugs were not ready yet.

We went to Starbucks and had coffee (Janet), and tea (me). Took our time, talked and had a great rest. Finally made our way back. A nurse was waiting for us. Turns out my blood cell counts were too low for chemo. More specifically, my white cell count was low. Something to do with my Neutrophil count being too low. No one seemed particularly alarmed in any way. Not a big deal. Happens all the time. Nothing to be done but wait for the count to go back up. Could happen any time. I have been given a reprieve until next week, which is this week since I am writing this on Monday morning.

The chemo schedule had to be changed since we are now out a week. My last session will take place on December 23. Merry Christmas.

The complications that arise from this move are interesting. For starters, I have to take these pills an hour before going in to get the chemo. It really is not a big deal. The pills are tiny. There are seven of them. The pharmacy releases the pills the week of the chemo. I cannot purchase all the pills I need for the remaining chemo sessions. I guess they feel I might overdose on them or something. I have now taken the pills that were due for this session, so we have to get a new prescription.

Next week is going to be a busy week. Seeing the oncologist, and the surgeon, and getting a CT-Scan done to review the State of the Union. The surgeon will probably give the go-ahead for the Avastin treatment. I have to read up on its side effects.

My brother is coming for a visit this Thursday. My sister is coming for the day on Sunday. All good. Looking forward to seeing my brother. He gets to see the baby bottle. I am looking forward to the visits. I think it will help cope with the treatment. I had very few issues last time, mostly tired. But having my family here will help. Specially if Fetneh bakes me a banana cream pie!

I am keeping busy. Driving a lot more. The weekend was very tiring. I don’t think I ate enough, in fact I know I did not. We went to Ginger’s to look at showers fixtures. All the showers we saw have these huge round plates that cover the wall and hold the spigot that turns the water on and off. The ones that have a small discreet plate, done tastefully and with respect to the rest of the room are in the $7000 price range. You read right. Don’t get me wrong, I love a shower as much as the next person, but $7,000 for a shower fixture?

We next went to Elte to look at furniture. Janet wants to ge rid of all our furniture and start over. Elte is huge. They have carpets and furniture. No appliances or anything. They are way too good to carry that sort of pedestrian stuff. We saw a couple of pieces we like. The first was perfect for our living room until you sat on the couch. It has to be the most uncomfortable $11,000 couch on the world. Almost as if they went out of their way to make it so. Not that we are about to shell that sort of money for a couch, but why so uncomfortable?

Cut a long story short, we got home around four, and I was pretty much done in. Took a nap. Made some rice for dinner. Sharon Singer came by for a visit. We had a great time. One thing you have to understand about me is that I talk very fast. I loved watching Sharon as she cocked her head to one side and concentrated really hard to understand what I was saying. My brother says I would have to repeat everything when I was a child because no one understood a word I was saying. So little has changed.

I am getting out more these days. Driving. I am going to see Steve this morning to fix three computers. We cannot afford to be without them, so they have to be fixed and returned right away. He is good about that sort of stuff. Looking forward to seeing him again. This is the best. Life returning to some semblance of normalcy. May sound boring to you, but it is heaven in my books.

Better be better

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Nov 012009

Spent a lot of the night reacting to one upset or another.

Got a headache. Took a couple of Tylenols.

Got nauseous. Took my nausea pill. again a bit late since I was trying to sleep and fought it for some absurd reason. Too late to suck on the ginger candy Jill Martis sent me.

Just call me pill popping Papa.

I did some research on the web about side effects of the H1N1 vaccine. Nothing new. But there was a link to what to expect if you get H1N1 and its side effects. below is the table copied straight from the Gov of Canada web site.

Almost Always:	Common:	Sometimes:
Sudden onset of: Fever Cough	Fatigue Sore throat Decreased appetite Muscle aches Headache Runny nose	Nausea Diarrhea Vomiting

Almost Always:

Common:

Sometimes:

Sudden onset of:

Fever
Cough

Fatigue
Sore throat
Decreased appetite
Muscle aches
Headache
Runny nose

Nausea
Diarrhea
Vomiting

I felt better when I saw this list. Not that I have H1N1, but I wonder if it possible to show these symptoms because of the vaccine.

There is a lot of hype about whether to get the vaccine or not, I decided I had little choice. A compromised immune system leaves you feeling, at the very least, more vulnerable to anything that is making the rounds. It does not help that this thing seems to spread so very easily.

It takes a while for people to start exercising better hygiene. Washing hands is a must. I still see people leaving washrooms without washing their hands. I bring this to their attention once in a while. You almost always have to brace yourself for a fight. One guy called me the hand washing police. I see other people just soak their hand under water. No soap. Useless.

Washing hands is one of the simplest ways of stopping infections. Why is it so hard for people to do that?

We were supposed to visit Janet’s latest project yesterday. You can check it out here. They have created this bakeshop where people bring in their children and they bake these things. The place is booked solid and packed to the gills. We were planning on going there today. Nancy just called to say that the store is packed with people which means only one thing. I cannot go in and risk the exposure.

This is a stupid life.

It was not meant to be this way

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Oct 312009

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.

Halloween

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Oct 302009

Tomorrow is Halloween.

To celebrate or not?

We celebrate every year. Make a production of it. I usually carve multiple pumpkins, some with two faces. Takes a lot of patience to carve all these faces and make them unique and scary. It is fun and well worth the effort.

The second Halloween in our current house was a big production. I bought Christmas lights, white paper table cloths, borrowed a plastic snowman from Nancy and rented a Santa costume. I laid the white table cloths down covering the front garden making it look like snow. Strung the Christmas lights across the front garden. Borrowed Devin’s ghetto blaster to blast Christmas carols through the night. Janet came home to a house lit like house on fire. I am sure you could see it from space.

As the kids showed up, I would bound out of the house yelling Merry Christmas. Scared the hell out of them until Janet and Leslie stopped me from doing that. SO I sat on the front porch with my Santa bag welcoming the children. Poor kids. They kept telling me how much they loved me, how good they were. We almost felt bad for them. The confusion in their voices was palpable.

We have gone to David Powell’s house after our kids stopped coming. Arlin and I would take Jack out and smoke our cigars. Jack is very popular. Everyone knows him. He was a Halloween machine collecting two pillowcases full of candy. We would go back to David’s for dinner and to pilfer through Jack’s pillow cases. Someone had to save him from all that candy.

Our previous house was a more communal affair. We decorated the front yard and got ready for the Halloweeners. We had drinks with our neighbours while we handed out the treats. It was a big party. Ann and Frank, Valerie and Chad were our neighbours. One big family. It was a lot of fun, no matter how cold it was. We miss that.

We made sure Devin celebrated every year. He was dressed as a giant pumpkin one year. He wanted to God another year. A sheep. Stingray. Bloody chef. You get the idea. Lots of costumes. I would take him door to door. It was lots of fun.

All this to say that Halloween has always played a big part in our lives. A bit like chehar shambe souri (ask your Persian friends) but a lot more fun.

Halloween this year will not be the same. I do not have the energy to carve all those pumpkins. I cannot be exposed to all those kids, just in case one of them has H1N1 and does not know it yet. I cannot open and close the front door all night either. A whole bunch of no’s that add up to no Halloween this year.

We have been discussing it all week. To do or not to do. It was a go as late as this morning.

Carys, my four year old niece has a temperature. Started last night. A temperature of 39. Leslie took over some Tylenols for her to help control things a bit. Her temperature has been going up and down all day since. She heard on the radio with of our Health Officers that a child with flu symptoms right now has H1N1. Carys has H1N1. She has not been here for a while, so no danger there.

It just emphasizes the dangers of exposes myself to a while bunch of children who may (or not) have H1N1.

No Halloween this year.

I cried.

Normal Reality

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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.

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, [...]

No Chemo

Better be better

It was not meant to be this way

Halloween

Normal Reality

Anxiety

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