Slept badly in spite of not feeling guilty about it.

A whole bunch of side effects, which we believe to be from Avastin. My skin has felt hot all week. No temperature or nausea or or feeling hot or anything that is usually associated with hot skin. Just very hot skin. Janet keeps kissing my forehead. I am on to her. She is not kissing me out of love, just wants to make sure I do not have temperature. Faker. Though I suppose that is a measure of love.

We finally bought the shower head you keep hearing about. Drove out into the hinterland that is the Greater Toronto Area, a store run by Iranians. This is as fun as it gets. The better part is making our way to an Iranian store called Tavazo to buy Iranian nuts and stuff. The best pistachios are the ones from Iran. There is no argument there. NONE! We bought a bunch of those, and mixed nuts which include a generous helping of Iranian raisins, and dried mulberries.

My father used to eat the raisins to thin his blood. I have no idea if it worked or not, or how much of these things you have to consume, but he swore by them. Not an issue for me, his swearing by them, I love those raisins. Love raisins in general, but those are particularly good. We lived in Iran between 1963 and 1965. I remember going to the country where we were offered fresh mulberries. These are nothing like the ones that fall off trees here. First of all, I remember these trees as being huge. Whether that was a reflection of my short height, I am not sure. The workers would place huge white sheets at the foot of the tree. A bunch would then climb into the tree and start shaking it releasing all the mulberries. These are almost white in colour, and very sticky. And delicious. You had to eat them with a spoon. It was love at first taste.

We buy the fruit here in a dry state. Not as delicious, but a wonderful second best. They tend to dry up, which is easily rectified with a slice of apple added to the dried mulberries. Keep the lot in a plastic for a couple of days, and you get wonderful moist mulberries. Unless you are my brother who appears to like them dry. No understanding people.

Back to me, which is what this is all about.

The past week was marred by periods of extreme exhaustion, poor humour, and a general feeling of being fed up with the whole thing. Judy tells me I have to brace myself for about 18 months of this sort of stuff. Counting the months down to month 19. We have just finished month 1. Sigh.

We went for dinner at Judy and Arlin’s house on Saturday night. I sent most of the time lying on the couch, and we were there for only 2 hours. Sunday was like a breath of fresh air. Not sure how this all happens. Dying one night, up and at them the next morning. But there we were taking a drive to the country to see Ann and Frank who fed us a fabulous lunch and apple pie. Ann is an amazing cook and baker. I drove out there, and more importantly, felt up to driving back. The trip takes between 45 minutes and 1 hour. Not too shabby.

I am seeing Dr. Kennedy, my surgeon, this afternoon. I am expecting a clean bill of health, specially after the positiveness of Dr. Hedley. You can read all about the amazing Dr. Hedley here. She better not say anything about my hair. Yes, it is still all there. Though my scalp is sensitive to the touch, and I am shedding some hair, but no clumps coming out yet. I am still thinking of having a party at my hairdresser’s. I should maybe talk to him before sending out any invitations.

I tested a new bag this weekend. I will reserve that for its own post. It deserves it. Strange technology, this bag thing. Harder than it looks at first sight. Or second.

Talked to a lot of people over the past few days, all of whom are reticent to commenting on this blog. Apparently, some current commentators are just to insightful. But that is the whole point of the comments. Some insight, some humour. No observation is too slight.

I am glad I am doing better as we head into chemo week. I was dreading going into it feeling the way I did on Saturday.

Felling strong and mighty.

Hair mostly intact.

Onward and upwards.

We searched the web for the side effects of Avastin. It includes just about anything that is not included with the other drugs. name it, and it is a side effect. All of it includes an emergency visit to your doctor or the emergency room.

Chemo Brain is setting in. What do you want for dinner, she says. That takes way too much thinking. I literally sat there looking at Janet wondering why she is asking me that question. What do I want? The answer stopped at the question. Too much. You decide, Whatever you make is fine.

Chemo Tired is also setting in. Cannot be helped. I have to stay awake since my brother is coming in tonight. He should be here in a couple of hours. Chemo tired just means you put your head down and snooze whenever and where ever.

The Avastin was a bit of a surprise. I thought they might put it off till after the CT-Scan. It threw me for a loop. Again the unexpected. The surprise move. The unknown. A bit silly really after all this time. Yeah 2 months and a bit make for all this time. Still, we are becoming veterans. The nurses are beginning to know us. A club.

Went in for blood work in the morning so we would have the latest possible results. Missing chemo last week upset janet and Judith a lot. Ruth put a positive spin on it. Imagine what havoc the chemo is wreaking on the cancer cells if it has that knd of effect on the white blood cells. Not sure I understand the correlation, but it pacified Janet. Good thing.

Went in this morning. They took my blood. Left the thumb tack in my chest. Now we wait for the results. My white blood cell count which had taken a dive over the past four weeks has rebounded to 3.9. The number means we are safe for chemo. Had o wait two hours to be let in. Left the club room at 5:00. Late. Dark outside.

A bit nauseous. Nothing my amazing pills won’t solve. But only if it is nausea. Have a hard time telling.

This too shall pass. We will survive and move on.

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.

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.

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

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.

I woke up at 11:30 and was contemplating getting out of bed. It turned out to be 1:30 when I finally rolled out and into the shower. Picked up Janet at 2:30 and went to see Dr. Kennedy. The waiting room was unusually full. One doctor appeared to be running a production line. He was whizzing through his patients.

One patient sat across the room and was coughing and sniffling all the time. No mask. I finally went to the nurses desk and brought this to their attention. They started discussing amongst themselves trying to determine whose patient she was. But nothing was done about it. We have a ways to go in enforcing the rules that we post so freely.

David Woodley, Dr. Kennedy’s assistant came to get us. He has a very firm hand shake. A handshake. We are supposed to avoid those as well. This will all take a while.

Dr. Kennedy called a nurse in to remove all the tapes from my stomach. The main problem has so far been the sutures that did not hold. Dr. Kennedy says it has granulated and needs to be burned off. Out comes the sticks. They are 6 inch Flexible Caustic Applicators with 75% Silver Nitrate ans 25% Potassium Nitrate on its tip. The sticks are kept in a dark pouch. They lose their torture rating if exposed to air.

The tip of the stick is rubbed against the granulated skin on your wound. The skin is granulated which appears to be skin that has formed but has no idea what to do next. It is burned off to allow new skin with half a brain to form and take over. The burning process is repeated every three days until it is totally healed. Dr. Kennedy says it is pretty much healed at this point, just needs a bit of encouragement to close up completely.

My super wound nurse, Annemarie had done this to me once with interesting results. Lots of pain rolling across the stomach. Annemarie says she has not seen my reactions before. Imagine that, me, with a unique reaction to a treatment. The burning hurts again. You might well imagine that burning any part of your skin, healed or otherwise, hurts. Nothing two Tylenol 1′s will not mask.

We also have a discussion about the alien forms in my stomach. Dr Kennedy smiles. She is slowly getting accustomed to my sense of humour. The insides will eventually settle into the right position. May take six months or a year, but eventually, all will settle down and the lumps and growths will disappear.

Is is strange how adaptable we are. The first sight of the alien stomach horrified me. It is is now not even a minor point. Not that I am anxious to share the look with others, but it is not an issue to dwell over. The more important elements of my condition happen every couple of weeks when I get the chemo treatment. It is all relative to whatever could be happening that would be worse.

All is good. Though no Avastin yet. There is no rush for that anyways. It can always be added at a later time when the body has healed a bit more. Avastin may have a negative effect on the sutures that were done inside the body, the ones we cannot see. No rush.

We go home in good spirits.

Leslie is not feeling well. She keeps wearing a mask around the house and is considering moving out until she gets better. I have very mixed feelings about this. I understand why she wants to move out, but it is very nice to have her around. I wish we can make some changes to our house that would accommodate her lifestyle.

I take a nausea pill after supper. This is what things have come down to. Feel bad, take a pill. As Fetneh said to me the other day, what a twist. A person who has never taken so much as a vitamin C now has an apothecary in his bedroom.

A bad night’s sleep. Took the Lorazepam, eyelids weigh down, Word Searches taking longer. Yep time to sleep. Lasted an hour. Woke up, leg jumping, posted to this blog, if only to make Sharon happy, tried to sleep again. Went downstairs, had a snack, took the other half of the L, back to sleep. Awake an hour later, back downstairs for another snack, finally fall asleep at around 4AM.

The thing about these hours, is that it throws your sense of time off. We vacationed in the Yukon one summer. Light 24 hours. There was a dusk and dawn which lasted about an hour collectively. We were having a bar-b-que one night when a neighbour came over and asked what we were up to. Seemed obvious, but his question had to do more with do you have any what time it is? It was midnight and we were just sitting down to dinner.

I am sleeping strange hours. Woke up this morning and thought it was early, except for the fact that it was 11:30AM. Late start to the day which is something I have to get accustomed to. It sort of changes the order of operations. Nothing wrong with that, just have to get accustomed to it.

Kali is thinking of coming over this afternoon. I think we will go for a walk. I need to shower before she gets here.

We have no idea how this works. The baby bottle contains a soft plastic bottle that contains the chemo. We looked at the bottle on Friday to see if it was working, and could not tell. The soft plastic container was still full. Turns out that the soft plastic container shrinks as it empties. The baby bottle has graduated lines on it as a guide the shrinking of the soft container. By Saturday morning, the thing was pretty empty.

We kept looking out for signs of anything. Nausea, exhaustion, dehydration, anything that would reflect something negative going on. But all was fine, except I am very tired. Part of it is the lack of sleep, but a lot of it is the chemo gradually working its magic.

Nurse calls on Saturday, around noon. She will be here in 15 minutes to disconnect. I forget to ask her name and she does not volunteer one. They all call and identify themselves as nurse, nothing else. Once they know you, its a bit different. So I assumed this was a new nurse.

Door bell rings, and it is Natalie, my very first nurse. How delightful! She is very encouraging. She wanted to surprise me, and elected to not identify herself. There will have to be a price paid for that. She remarks on the huge progress I have made, which means a lot since she was the first one of the nurses to see me and has not seen me since.

The disconnection ritual is almost as elaborate as the connection. Out comes the envelope that contains the gloves. Out come all the syringes containing God knows what that will be used to flush out my system. Then the gloves go on and the ritual starts. Bottle is disconnected and discarded in a container that has been provided for this purpose. The syringes are applied next including the blood thinner. Finally, the porta-cath is disconnected, very quickly. No pain there. The needle looks like a giant, very thin, very sharp thumb tack. Everything goes into the disposal container.

What a relief!

Natalie also looks after my wounds. She is so sweet. We have a lovely conversation and she leaves. On to her next conquest.

I am exhausted, but still no sleep. This is getting tedious. I take a full Gravol in the evening and wait for the drowsiness to set in. No luck. I am wide awake and remain so for most of the night. I get a total of 4 hours of sleep and wake up on Sunday morning in a very irritated mood.

Sunday is Thanksgiving and dinner promises to be amazing. Judy is bringing the Mennonite pasture raised turkey. Janet is providing the vegetables which she and Leslie have been cooking since Friday at a very leisurely pace.

Janet and I go shopping. We are looking for a chest of drawers of some sort to hold all the medication, syringes, and colostomy supplies. They are all sitting in boxes on the floor in the bedroom. A bit of a mess. we don’t find anything, but one store they will make something for us on spec. I will draw it out and measure it and see what happens.

I try to sleep in the afternoon so I can participate in the festivities. My stomach is playing an number. Lots of gas and discharge. I can feel the stuff rolling inside me finding its way out. This is not comfortable. Sleep eludes me though I am, again, constantly, unavoidably tired.

We celebrate Thanksgiving on Sunday evening. My sister, Fetneh calls in the morning and we have a long chat. I tell her about the planned dinner and she wants to know why she is not invited.  Hop on a plane, I say, simple. The bed is made, and you know your way around.

She does. What an amazing surprise to have her join us even if it is for a day. I am thrilled.

Dinner was amazing. We have pictures, They will be posted as soon as I get around to the recipe page. I ate like a king but did not overdo it. Very worried about my stomach. Took a nausea pill just to be on the safe side.

Went to bed at 9. Fell asleep only to wake up an hour later. Did a Word Search page and went back to sleep. Woke up at 4:30. Feeling much better this morning