Chemo on May 4th was postponed by about a week. My white blood cell count was very low at 0.8. Janet was right on the weekend. Dr. Hedley recommended I do another blood test on Tuesday morning. These things are pretty fluid. The counts go up and down with great regularity.

I went back in on Tuesday morning are 8:30. The earlier the better. Takes an hour for the blood work results to make their way to the Chemo Daycare. Once approved, it takes about two hours to get the drugs ready. It pays to go in early. I went home after the blood work. No sense in hanging out there. We live about ten minutes away.

Got back to the daycare at precisely ten for my appointment. I explained to the admin person that my white blood cell count had been low and so on. Ahh, she said, right. There is a red tag on your folder which means Chemo is a go. They cannot look at my results, nor can I. Only a nurse can. And? No, cannot see a nurse until I go in since there is a red tag on my binder.

I waited an hour before deciding to go get a bite. They give you a pager. You have to stay in the building. No issues there. There is a Druxy’s in the building. I go down and get a bite. A lovely balanced diet. Fruit bowl with yogurt, and a chocolate bar. Go back up around 11:01. I know that because the admin person asked me where I had been. They paged me at 10:55 for God’s sake. What took so long. I ignored her. The nurse wanted to see me.

They made a mistake. My white blood cell count was down to 0.7. No Chemo was possible. I complained about the admin staff. The nurse suggested I complain to the hospital. She cannot do anything about it.

I was very upset at the waste of time. I could have gone home at 10:05.

I came home and wrote a letter to the customer relations person at the hospital. That conversation coming up in a separate entry.

I came home and rested. My energy came back with a vengeance on Wednesday. I am not sure how to explain my feeling when my energy returns. You feel like the walking dead while the energy is depleted. Very emotional. Cry at anything. You then wake up one morning and your energy has returned. You feel like a new person, almost jumping out of bed. New day, new person. You run around getting things done. Race against time. No rest allowed, too much to do, too little time. There is a poem in there somewhere.

You pay the price at some point when the energy is depleted. You crash and sleep hoping to recharge the batteries so you can start getting things done again. My energy level has lasted so far. Chemo is scheduled for Tuesday again. Neulasta on Thursday. See what happens. I am resting for the next couple of days.

Playing on the computer is resting for me. Hence the blog entries.

Thank you for being there.

Back to chemo daycare after an extra week off to celebrate the Baha’i New Year. That was on March 25. A very uneventful day as all visits to the Chemo Daycare unit are turning into.

The nurse showed up as promised. I had the pleasure of seeing Natalie again. Unplugged in no time. No fuss no muss as they say, though again I have no idea where the expression originates from. Muss is defined in the dictionary as: a state of disorder; muddle. I guess that would explain the expression, but who comes up with these?

The fatigue that set after the chemo is a whole other story. Janet tells me it is normal. I doubt it. I was virtually in bed for what seemed like forever. I would run one errand and retire to recover. I was finally out of bed and doing things on Thursday. What a relief. Kali joined me for coffee on Friday. We got to sit in the park.

A fabulous coffee house has opened around the corner from our house called The Rooster. Great coffee, lovely people and always packed. We bought our stuff and went across the street to enjoy the food, company and conversation. Kali is very well informed about the stuff Ronak Shah is talking about. Made for an interesting afternoon. Maybe once I have digested the information, I will talk about it a bit more. Fetneh also had an opinion. Makes for an interesting conversation.

Friday evening saw us in emergency at the Toronto General Hospital.

I am beginning to think it to be futile to imagine for a second that a normal existence of any kind is possible. Just as you start to relax and start a routine, something falls apart. In this case, I started experience a lot of discomfort in the stomach area to the right of the stoma. This was accompanied by a full day of no activity from the stomach. A bit disconcerting.

A doctor named Hodges looked after us. He actually had the temerity to read my chart and remember what he had read. He was very comforting and well informed about the situation. We did an stomach Xray to see if there was anything blocking the passage. Turns out that blockage of the passage is a definite possibility following operations such as mine. Not just now but essentially for ever. I keep hearing the for ever mantra over and over again. Have to start paying more attention, and come to some sort of understanding of “for ever”.

No obstruction, just stool being stubborn. Lost their way and are hunkering down for the long haul. Nothing some industrial strength Drano would not solve. I was prescribed something called Lactulose, which is over the counter. I have to take 2 tablespoons of this stuff up to four times a day. Makes ExLAx look like a glass of water. My bag floweth over. No really. Literally. Damn thing blew apart spilling its vile content. All I could do was make my way to the washroom to clean things up trying to contain the spillover. Life is nothing short of exciting. The only question I have is when do you know the system is back to normal? I guess I have to wait and see if the stomach pains return or not.

I was very upset yesterday. Mad as hell. How dare my body betray me like this? This is my one good week. The least it could is let me enjoy it. I now have to be careful for  a few days waiting for this to pass.

One more item to add to our list of stuff to watch out for.

And one more: The skin around the stoma has turned black. Not sure if it is because of the trauma it is going through or something to be really worried about. I have written to the wonderful Dr Kennedy, my surgeon for clarification. I am going to see her next Tuesday anyways. It would be nice to have some sort of clarification before that.

I have been in great spirits until yesterday, when my bag did the spilling over scene. Yesterday was not a good day, spiritually, nor physically, I guess.

Today is already better. Gita is supposed to join me for coffee. I might go to her place just for a change of scenery.

I think I should take a one week break from Chemo every 6 sessions.  I was given a one week reprieve last week to celebrate Naw-Ruz, the Baha’i new year. I kept getting stronger all week as the effects of chemo and Neulasta receded. Imagine what a difference one week makes.

The Baha’i calendar is made up of 19 months on 19 days each. The geniuses amongst you will figure out that this comes to 361 days. This leaves us with 4 to 5 intercalary days which come at the end of the 18th month. These are generally spent feasting and preparing for the fast. The latter takes place in the 19th month. You cannot eat or drink from sunrise to sunset. You can eat and drink to your hearts content overnight. The trouble is that your stomach tends to shrink somewhat as the Fast progresses. You tend to not gorge as much as you might think.

Women who are pregnant or feeding a child, anyone under 15 years or over 70 years of age, anyone travelling over 2 hours, the sick and infirm, are all forbidden to fast. For the rest of us, the fast provides an occasion for spiritual rejuvenation, a time to meditate on our lives, and renew our physical strengths. We can break some habits, like that muffin you have every morning. Far from thinking of it as a punishment, or a chore, the fast is viewed as a time of contemplated renewal.

The Fast ends at the Spring Equinox or March 21. This is probably the biggest feast of the year. We eat all day and socialise like mad. The Iranian tradition for Naw-Ruz is that the younger members of the community spend the day visiting the elders of the community to pay their respects. My parents were the elders while we lived in Montreal.  This is an interesting exercise. The elders are forced to socialise by providing food and candies and tea,  No Iranian house is complete without tea. We spent the day serving people and washing dishes, getting ready for the next crowd. It was actually fun. Very festive.

We had a Naw-Ruz party at our house this year. About 25 people showed up to help bring in the new year. This is the year 147 according to the Baha’i calendar. Our Faith was founded in 1863. More info for those who are interested (and even for those who are not!) at the main Baha’i web site.

We served three types of rice, courtesy of Fetneh who cooked like a fiend while I watched. We bought pretty much everything else, the chicken, salads, vegetables. The deserts were brought by our friends. It made for a hectic Saturday and Sunday morning while we prepared the room for the large crowd. There were so many people I wanted to invite. The numbers were going a bit out of control. My apologies to all those who were not invited. It was a very sweet occasion.

Fetneh arrives on Sunday and left on Monday. Always sad to see her go. We are planning some mini trips as soon as the weather gets warmer. I think the first one may be to Montreal in June. Just 3 or 4 days. Leave here on Friday, come back on Sunday or Monday morning. We might go to New York before that. We will see. Janet plans on taking a few extended weekends to make all this possible. A visit to Montreal requires a meal at Quartier Perse, the best Iranian restaurant in the country. Our friend Mahin owns and runs the place.  Have not seen her in about a year. It is time for a visit.

Chemo resumes this week on Thursday. I am going to try and move the Chemo to Wednesdays. That way I get disconnected from my infuser bottle on Friday leaving the weekend open.  The schedule they have set up for the next 6 sessions is a bit convoluted. Should make for an interesting interaction with the lady who sets up the schedule.

Thank you all for being there for me, for listening, commenting. All very humbling.

Not really, just seemed that way. I got my Neulasta shot as directed on Monday February 8th. As you may know by now, Neulasta kicks the living daylights out of me. Far worse than the chemo. The week is plagued with a constant temperature, low but constant. Extreme fatigue accentuated by bone aches that seem to travel through the body before settling somewhere, like the lower back. The process is over within a week, usually resulting in boundless energy.

Then came the cold. Started on Thursday last, came into full force on Friday relaying me to the bed on a continual basis. Temperatures fluctuating wildly between normal at C36.5 right up to C38.2 (F100.7 at its zenith). This went on for days until Janet insisted we go to emergency. Fo’ad was here for the week, I had all kinds of plans for us, all for naught. He and Barbara kept themselves busy while I lay on the couch pretending to be alive.

The emergency staff put us in isolation. They wore the yellow gowns and gloves and masks. I felt pretty safe from whatever disease they might have been carrying. Blood was taken, vitals signs taken twice, once in triage which showed my temperature to be normal, the second one showing some level of temperature. A chest X Ray was also de rigueur, just to make sure there was nothing in there, since they seemed to hear some sort of stuff lurking in the interior.

The blood came back clean with a high white blood cell count. Thank you Neulasta. The chest X Rays came back clean as a whistle.  I have never quite figured out why we consider whistles to be so clean after spending time collecting the spit of the blower. But there you go, lungs were clean. 3.5 hours later we are headed home. Viral infection. Drink lots of liquids. Call your oncologist tomorrow.

Did I forget to mention that their computers were down? All night. Everything had to be done the old fashioned way, paper, phones, conversations. Hence the 3.5 hours.

I felt very bad for my brother who had driven all the way here only to find me in a state of total bed riddeness. He fellt bad that I felt bad, and the circle continues.

Fetneh also came by and stayed overnight. Had a wonderful time with her, as always.

I left a message for Dr. Hedley who called to get a picture of the situation. Chemo was a go as far as he was concerned. The major part of the cold should be over by Thursday.

Fo’ad and Barbara left on Wednesday. No sense in sticking around with the sicko. They had planned to return on Wednesday all along. Fo’ad had mentioned the possibility of stayin an extra day, if it would make a difference. Did not seem to make any sense. Off they go.

I woke up Thursday morning as if the previous few days had never happened. No temperature, slight cough, full of energy. Bring on the chemo.

As you might guess, chemo has become very routine. Walked in all alone. Janet came to pick me up at the end. I watched the nurses going to and fro at a brisk pace smiling and cheering the patients along. Have I mentioned how wonderful these nurses are? Truly amazing.

We went out for dinner last night, for no other reason than to get me out of the house. I went to the market in the morning. Came home and went straight to bed. The night out was welcome.

C’est tout pour cette semaine. A bientot.

This was a good week overall. A bit of trepidation getting mentally ready for the chemo session. Not sure why there is any trepidation. This has become an almost routine event.

Janet had to work this week, and Devin had to go to his piano lesson. I drove to the hospital for the 10:00AM appointment. Registered. Their systems had been down all morning and they were running behind. The front desk personnel were nice enough but not exactly brimming with information. I did not even ask how long the delay would be. They have never given us a straight answer in the past, why bother now?

They have this system where they give you a pager if you want to wander off. I had to go outside to burp my bag. They gave me a pager. It works only within the hospital. It works well as a system. It does allow you to wander a bit. I got to sit in a different more comfortable lounge. The only downside is the incredible volume the pager is set at. There is no way to shut it off, or lower the volume. Once it goes off, the whole world is alerted.

My pager goes off and I report dutifully to the front desk. They tell me to report to station 12. There is usually a nurse who greets you and takes you to the station. Have I become such a regular already that I get to usher myself in? A bit unnerving.

The Chemo Daycare has a large number of stations, some are beds, some recliners a la Lazy-Boy, and then they have these recliners that turn into beds. Almost flat. Just enough of an incline to be comfortable. The latter is the one I usually get. Station 12 happens to be a bed. I always wondered why some people got beds, and others not. They even two beds in private rooms. Who decides who gets what? I am the lucky one I guess, got a bed and a nurse I like, Jessica. I asked her why I was privileged, and whether we should close the curtain and have some fun. She laughed me off.

I overheard three nurses discussing the shortage of beds. Turns out they have a new patient, a first-timer, who should have a bed. I gave up my bed. Really don’t need it. Are you sure, the nurse asks. No really, I am just as comfortable in a recliner. The fuss they made over this very normal gesture. Love my nurses. They gave me a recliner in a lovely spot. I can sleep or watch the goings on of the daycare.

This is the second chemo session that I have slept through. Once the main drugs are attached to me, I put on my music, get a blanket, and start dozing. If the turn the music high enough, you cannot hear anything at all while quietly going deaf. Magic.

Devin got my a sandwich for lunch. I have no idea when he showed up. Suffice to say that I woke up just as my drug regimen ended. Ate my lunch. The drug regimen, as you consists of three drugs. The firs is Avastin which takes about ten minutes to administer. The second takes about 90 minutes to administer. The third takes 46 hours. I get to go home once the bottle is attached. A nurse comes over and detaches me sometime on Saturday morning. She happened to come early today, which allowed me to take a shower and get on with my day. Happy, happy, joy, joy.

Even Chemo is becoming a routine experience. Devin drove me home. He went about his business, I went to bed to rest. Had supper, and was soon back in bed. Had a bit of a restless sleep. My bag kept inflating to dangerous levels. I had to get up and burp the damn thing every hour. Somehow managed to go back to sleep in between. That lasted until about 6 in the morning when the maniacal BooBoo Long Paws decided it was time to play with anything and anyone who was available. Janet got up to get ready for her exercise class, I got up soon after. No point in trying to go back to sleep.

Took a welcome shower. I cannot take a shower while the pins are stuck in me. Basically, from Wednesday to Saturday. You can imagine how anxious I am to have the pins removed early so I can shave and shower. Janet and I went to eh market, and decided to wander along Queen Street to look at furniture. We are desperate for a new couch to replace the one we have that has been decimated by the wonderful Busbee.

Good plans that don’t last long. We went shopping for furniture, and ended up buying clothes for Janet, and a couple of prints for the house. Cheered us up, but no couch. We wandered into a couple of furniture stores, but decided to head home instead. I was starting to lose my energy. It was a very good morning.

My reactions to chemo are a bit confusing, to say the least. I still have my hair, so all baldy jokes are put on hold. It is thinning out every day, but still there. My appetite is amazing, which I am told is due to some steroids that I have been prescribed to handle the nausea that accompanies chemo treatments. And no, I am not bulking up, just always hungry.

I do not have any nausea or other bad effects from the Chemo, except for fatigue. It is continuous and very frustrating. Just the way it is going to be from now on. Not much can be done about it.

That’s it for this week. Thanks for listening.

No not from chemo. Side effects from stuff like this blog. I am not sure what the original motivation was. Communicating with family and friends? Therapy for me? What? The effects of the blog have been nothing short of amazing. An acquaintance of Nancy’s wrote at the very beginning thanking me for the blog. Her [...]

I am late, so very late in keeping this blog up to date. I will make this post an update of two weeks. You have all read the Euphoria piece in which the cancer cells appear to be retreating before the shock and awe that is chemo. The spell of the good news kept me [...]

The days are a blur. Christmas was barely noticed, as is the Hew Year. Cannot stay up to celebrate the coming of the new year. I guess I will have to celebrate when I wake up in the morning. This is a chemo week. My oncologist’s New Year present. Went in for blood work on [...]

Our friends came over for dinner last Friday night. We brought in food from Riz, always wonderful and tasty. Unfortunately, Daryl who organised the evening came down with stomach flue and could not come.  We had a great time. I monopolised Judith all night which was wonderful. My back had started hurting in the afternoon. [...]

The Oncologist We received an eMail from  our Oncologist”s assistant, Shahnaz, that we should come in ad see Dr. Hedley on Wednesday, the day before our chemo. He needs to see the blood results and discuss us taking Neulasta, a drug designed to boost the white blood cell count. It appears to be standard release [...]

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