We are slowly realizing that a lot of decisions are ours to make. If we want to quit the Chemo Session, than quit it is. We are in charge of our treatments. The doctors are there to guide and advise us. The ultimate decision is ours. This is a bit freaky. We are never sure if we are making the right decisions or not. Do we have the right amount of information to make a decision? Is it the right decision? To make matters worse, the doctors themselves are not sure either.

Every body reacts differently to the drugs. We were at a small party celebrating Kali’s birthday the other day. One of the friends has a brother with very advanced lung cancer. The gave him one Chemo session to which he reacted very badly. All the stuff they keep expecting me to go through. So sorry to disappoint. They removed his brother from any further Chemo treatments. So are you still on Chemo, he asks me. Yes. How long have you been on Chemo. Almost a year now, since last October. He was dumbfounded. I do not look or behave like a Chemo patient. Except for the afternoon naps. We are all different.

My blood work showed more positive results than last time. My liver enzymes are closer to where they should be with one indicative being totally in the normal range.

Dr. Hedley brought up the fact that we have not had a break since this thing started. I started feeling the pains in June 2009. By August 1, the diagnosis was fairly complete and certain. Operation on September 2, Chemo in October. Yikes. A year without a break. The doctor saw no reason why we should not stop the treatments right now and take our vacation. A CT-Scan was planned for Friday (today) to set a baseline for the future. Next CT-Scan in two months. Chemo would only start again if my situation deteriorates. A steady condition will result in a longer vacation.

A two month Chemo Vacation is on the books. Cannot believe it. I am in a bit of a daze. Basically what happens when you receive bad news or terrifically good news. You cannot believe your ears and shut down. Two months with no Chemo.

Janet and I stared at each other. What do you say? How do you react?

Doctor Hedley wanted to feel my stomach to make sure all was right. I suggested that things were still a bit tender. I can lift heavier bags now, but feel some discomfort if I overdo things. I am sure the healing process will speed up without the Chemo getting in the way. He appeared to confirm this. Good news. I am looking into going to the pool on a regular basis to strengthen the stomach a bit. I get bored swimming. Back and forth, you go. I will have to do it nevertheless.

Can we start eating raw meats again? I miss my steak tartar, sushi, and oysters. I was given the green light for sushi. Say it ain’t so. We decided on the spot that we would have that for dinner to celebrate. Diana, Nancy and her daughter Lily are coming over. Makes for a grand celebration.

Dr Hedley mentioned that we are in really good hands with his nurse, Shahnaz. We truly are. She is magnificent. She mentioned how much the nurses in the Chemo daycare like me. I walk in with my big laugh and cheer them up. The doctor just shook his head. All the nurses love him he says. Then gives me a gigantic hug before leaving.

Janet and I were left alone for a few minutes in the consulting room. She high fived me. This is the first time in almost a year were I could a glimmer of hope in her eyes. She seemed ecstatic over the news. She had a bright smile and a glitter to her eyes. That was enough to make me happy.

I phoned Fetneh and Fo’ad that night. It is always good to talk to them after news like this. It helps air my thoughts, clear the cobwebs a bit, get some perspective. I eMailed them of course, but that was not clear enough for them. Fetneh was jumping for joy. She made me promise to not withdraw from life because of this. The are chances of withdrawal symptoms creeping in if you are not careful. The hospital has been a home away from home, as it were. A very safe place to spend time in. You get sort of attached to these things. The routine. However horrible the Chemo experience is, you get used to the routine. The people. The support.

I assure her that I will not regress. I will keep the blog going. I may have a bit of trouble adjusting to the new freedom. We will see.

Fo’ad was just as supportive, of course. How does this change life? I don’t know. My curly head of hair may even make a comeback. I see no negatives in any of this. I become so much stronger when I am off Chemo for even a week. This can only be good.

We have lots of plans. We have been invited to all sorts of places. Long trips are out of the question. One day excursions within the vicinity of Toronto can be done. We are going to see Anne and Frank in Pickering, John and Sharon have invited us to their horse farm, Heather and Neil want us to go their farm. Heather reminded me that it is almost a year to the day when we went to their farm to share the news. Their friend Beth was there, also a cancer patient. She had a long conversation with me about what to expect. Strange to think of that now.

Devin is leaving us to go pursue a master degree in Change Management at the New School in New York City. We should be flying down on August 21. Sadness and happiness combined. I am ever so proud of him.

September will see me visit Montreal again to spend some time with Hong Lan. Janet will be attending the film festival in Toronto. My visit to Montreal will take some pressure off her. I have to talk to Hong Lan a bit more about what her remedies are. Stuff that includes acupuncture to increase energy levels. She deluged with so much information that I had trouble absorbing it all. A revisit is a must. To say nothing of spending time with Fetneh, of course. I will try and stay in the same apartment as before, taking advantage of Steve Mykolyn’s generosity. It is good to have a space of your own, specially when you are in my condition.

I lay down when we got home. All this stuff is a bit overwhelming. We had dinner and I returned to bed and made my phone calls.

Yesterday was my very first day of this vacation. I slept for a couple of hours in the afternoon. I also wandered around the house a bit lost. I have so many things to do, so many projects on the go. Where to start? Sleep of course. I am having lunch with Kali today. Looking forward to that. Planning the trip to New York when I get home from that.

Tomorrow is a new day. Taking us back to another sense of normalcy. Can’t wait.

We met with the oncologist, the ever lovable Dr David Hedley. The results are not in. It takes apparently 5 radiologists to come up with the results. They consult and deliberate to make sure the results are accurate. Love them for it.

We should have the results by Monday coming and will report accordingly.

I went to give blood this morning. All is good. The nurses in the blood clinic were delighted to see me. This is very bizarre. I have great admiration for the nurses. They have a difficult job. We are all sick and tired and in a foul mood. Some are depressed, others whatever. The nurses have to smile and keep us going, their own problems set aside.

One of my nurses has a three year old who had a cold last week. She is doingbetter this week, and has decided to share her cold with her mother.

The other nurse is getting married this May She is all stressed out by the planning. She has two children.

Talking to people helps calm nerves and reveals so much about them. They have issues and burdens. We should take a bit of time to talk to them to relieve some of the tension.

I love these women to bits.

My brother and his wife left on Monday morning. My sister had come for the day on Sunday and left that same evening. I felt like I was on a natural high on Sunday. We even joked and laughed about my cancer. That was a a first and a very good sign. That people felt comfortable enough to laugh at this thing is way cool.

The last visit from my brother was followed by a huge emotional vacuum. This time was no different.  The high is followed by a very natural low. That was yesterday. The weakness of my voice is a dead giveaway.

Fo’ad drove me to the hospital for my CT-Scan. This is the first one since  the chemo treatments have started. The results should be telling. I am seeing the oncologist on Wednesday, so the wait is short for the results.

I had a pain in my ribcage last night right about where the liver is located. It went away by the morning and came back tonight with what appears to be a vengeance. I took a couple of Tylenol 1s. We will see if it helps. These things take about an hour to kick in.

My nurse Barb came for a visit this morning to see how I am doing. She will visit me every two weeks just to keep tabs on me. It was really nice seeing her. I somehow miss my nurses. You cannot help but want to get rid of them when they visit. Once they are gone, the story changes somewhat. It turns out the visits were nice and reassuring. Someone who looks at you and tells you how well you are doing and actually knows.

This has not been a good week so far. I went to see my supplier of bags and such, Faye. She is very sweet. We are looking at alternative brands. One of them has a locking bag. Makes sense considering my accident of the other night. We ordered samples. I went shopping for food after. Took some pictures.

Came home exhausted. It was not supposed to be this way. This is usually the first day of recovery where I show signs of strength, vim and vigor. Yet here I am totally exhausted and going to bed after I post this item. Not fair.

Tomorrow is a big day. I get to paint my picture of anger at the Art Therapy session. I already know what I am going to do. A no brainer when you have time to think. Just hope I can do my idea justice. You will see the results in the next couple of days.

And of course the oncologist.

Big day tomorrow

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.

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.

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