Date: December 2008
Location: Mexico City
Story: Could not believe that the panels were so available for anyone to touch. The symmetry of the panels was also attractive for some reason.
Janet and I had a bunch of question for Dr. Hedley. They cantered primarily around the need to continue the Chemo Sessions if they were no longer effective. What were the repercussions of taking a Chemo Vacation at this point, or at the end of August as he was planning> Taking a vacation now would allow us to enjoy the summer.
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.
Every once in a while a glitch appears in the system. A time space continuum as they would say in Star Trek. Never quite figured out what that meant. Sounds amazing though.
So it was on this Tuesday. The Chemo Daycare unit lost track of the prescription for my Chemo medication. They had to phone the great Dr. Hedley to get a renewal. I waited an hour and a half. The waiting room was full. I just assumed they had fallen behind. I finally decided it was time to ask questions when I discovered what was causing the delay. This was not good news. The had just received the go-ahead. We now had to wait a couple of hours for the pharmacy to prepare the drugs.
I had arrived at the vampire clinic around quarter to ten. My two favourite nurses were there, Delanie, and Viviene. Delanie took on the task of sucking the blood out of me. This was going to be a full blood test including the liver enzymes in preparation for meeting Dr. Hedley on Wednesday. I mentioned to Delanie how impressed people are with the committee approach to looking after us. She smiled and said that is reserved for complicated cases only. Ahh, more information. Every visit yields new insights.
This was going to be a long day. The whole process was finished at four in the afternoon. All the nurses who looked after me were terrific as usual. They have looked after me before, making for a very relaxed afternoon. My blood count was good. I am hoping to avoid Neulasta for this week.
A couple of interesting observations. One of the patients would not shut up. I watched him in the waiting room. He changed seats three times and engaged the people sitting beside him. They never said a word as he started his conversation and continued until someone else came along, or he was interrupted or something. He sported a small red button that loudly acclaimed that Cancer Sucks.
These two ladies walked in as well. They were a bit agitated, a bundle of nerves. One of them was the companion. They were both wearing the same T-shirt that said something about supporting some cancer fighting initiative. The tag line read Kicking Cancer.
I could not help but wonder at both these displays of distaste with cancer. I do not see the point of either. Both appear to me to be negative in their outlook. We all know cancer sucks. No ones needs to be reminded of this less than the other cancer patients in the room. Yes, it sucks, but what are you going to do about it? Railing against the intrusion does little except make matters worse.
Kicking cancer sounds a lot like you are constantly kicking your self somewhere you should be avoiding. In my case, that would be the liver. Already painful enough. It does not need to be kicked any more. It has gone through enough punishment already.
We have covered this ground before. We surely need more love for our bodies. Fetneh is always reminding me to talk to my liver and tell it how much I love it. Amongst all the other stuff we are doing, it is surely helping. One of my cats, BooBoo Long Paws, insists on lying on me for a bout five minutes almost every day. He lies on my stomach and purrs. We are sure that my liver responds positively to that as well. Whatever. We are full of superstitions about all sorts of things, why not add this to the list.
My body has stopped reacting to the Chemo drugs. Even Avastin is no longer causing the destruction to my nose. I have not had a nose bleed in a couple of weeks. I was talking about this with a friend of mine who said, wow, this is a good thing, no? No, is the answer. The body has rallied summoning all the forces within the immune system, to render all the drugs useless. This is not good. We are seeing Dr. Hedley on Wednesday for a longer discussion on what is next in this new life of ours.
Janet and I will be married for 30 years this coming August.
Life has not been without its ups and downs. No marriage is without, let alone one that has lasted this many years.
Good times are followed by bad, arguments, fights, misunderstandings, compromise resulting in better times. All along you wonder why you are still together. You take each other for granted, get caught up in life’s foibles. Wake up and find each other all over again.
Theories abound that women choose their mates. Men may do the proposal on bended knee. That is just submitting to the inevitable. Women appear to see something in their mate that he is ignorant to. It appears in fact that men are ignorant to a whole bunch of stuff and stay that way for what seems like forever.
Men see the house of their dreams only to be set straight by their wives. Lovely house, kitchen too small. Oh right. How about this house, beauty eh? Living room is the wrong size. Oh yeah. How about this? Do you think this is right? The seeds of doubt have been established. Or have they. Is this not just reality setting in? I am not being a cynic. Women make most of the important decisions.
The husband sees the house. Small kitchen? Nah. Just an opportunity to renovate. Rip out the old one and put in new cupboards. What fun. The ripping out is fun, only to realise that the rebuilding skills may be lacking, just slightly. IKEA may have to come to the rescue. She waits patiently for the project to finish. The power of the woman is that she has already seen the future and stalled the project before it had a chance to forge ahead and lead to further problems.
Contractors hate to finish projects started by others, even when the other is the husband.
We are going to celebrate our anniversary in New York this year. Devin is moving to New York to pursue a Masters degree at the New School. Subject is Change Management. Don’s ask. Still trying to figure it out. Seems like the new buzz word. Everything is changing. We someone with skills to manage these changes. He will have fun in New York. We have lots of friends and family there, all of whom have volunteered space and help and assistance of all kinds. He will not be sleeping in the streets any time soon. Devin had to borrow money from the bank to pay for all this. Loans co-signed by Janet. I would have gladly co-signed. The bank was being fussy about longevity of life and revenue sources.
I am tickled pink for him. To say nothing of how tickled pink he is for himself. Another expression with dubious sources. Why are we tickled pink? Why is that a good thing? He will be moving on August 21. We are all flying down with him, probably spending the week there which will include our anniversary on August 24.
I am not sure if I have written about our wedding. It was a wonderful affair set in the scenic resort of Esterelle in Quebec. We were young and broke and decided to plan the whole thing by ourselves. Fetneh assisted whenever she was allowed. The L’Esterelle resort is about an hour from Montreal.
It was a very rainy summer. Rained virtually every weekend. The weekend of our weekend was sunny, only to rain the weekend after. Lucky us. The banquet hall we had rented was built over the lake. Very scenic and beautiful. Made for great photo ops, which Fo’ad was more than happy to oblige us with. He mentioned later that he would never do that again. Could not enjoy the wedding and take pictures at the same time. Fo’ad is a great photographer. I have no idea where his collection of pictures and slides are these days.
We had booked another banquet hall, but they rented it out to someone else three weeks before our wedding. We were not fast enough with our deposit cheque. We scrambled like mad to find the resort which turned to be much better and nicer.
Invitations were sent out. About 75 people attended. My father came home from Nigeria where he was working. It was a surprise since he had shown no motivation to come. The Baha’i Faith requires us to obtain the permission of our parents before we get married. My father gave his consent, as did my mother-in-law, Maryse. My father-in-law, Morris was more reticent. Could we not live together first to see how things work out? Surely that would be more prudent. We persevered and eventually received his consent.
The Baha’i marriage ceremony was not accepted by the Quebec government in those days. We had a civil marriage at City Hall in the morning. We were quite giddy, had not slept in days. It was a short and uneventful ceremony except for our occasional giggles and fits of laughter. We went out for breakfast with our witnesses and friends, Ginny and Bryan. They are still together as well, and have moved to Toronto.
The civil and Baha’i weddings had to take place within the same day. The Baha’i day starts at 6:00PM. There was not much time to waste even though 6:00PM seemed like an eternity away. We had spent some time the previous day putting out signs along the byroads of leading to L’Esterelle pointing drivers in the right direction. The storm that followed blew away the signs.
We finally made it up to L’Esterelle around 2PM. Some people had already arrived just to make sure they were not going to get lost. Others got lost along the way, including my mother in law who was the DJ. She had a DJ company at the time called the Pink Ladies. She was quite good at it. I dressed very quickly and went out to make sure one of us to greet the guests. Janet was making herself all the prettier. Fetneh was doing the make up and hair primping.
I stood in the banquet hall greeting guests. The room had been set up with a head table. No, no, no. No head table. We are an egalitarian democratic bunch. The table was quickly removed by the very accommodating staff and the room re-arranged a bit. The flowers arrived late and were quickly set on the tables. Marys finally showed up and set up her equipment. I was in a bit of a daze. Janet had not shown up yet.
The Maitre D shows up at my elbow. This would be a good time to server hors d’oeuvres, no? I look at him in a daze and nod. Sure. It is now about 4:00PM. The hors d’oeuvres make their rounds. About half an hour later, the familiar whisper of the Maitre D appears in my ear. Good time to serve drinks, no? Sure, why not. I had no idea what was keeping Janet. 6:00PM was around the corner. I did not dare leave the room as the guests were milling about talking. Everyone seemed happy. No one was asking any questions about, what was to me, the obvious delays in getting thing going.
Janet showed up at 5:30 and the ceremony started. Lucky for us, the Baha’i ceremony is short. We can make it longer by adding our own words. The ceremony was complete before 6:00PM. Oh, joy, oh bliss.
Diana sang a couple of songs for us, others said some things. Don’t remember any more. It was time to eat.
We had a buffet dinner. All set up for the bride and groom to proceed. We arrived at the table to find all kinds of stuff we had nor ordered. Seafood galore, to say nothing of the magnificent ice sculpture that adorned the center of the table. Janet and I looked at each other. We can’t afford this. We never ordered any of this. The whisper comes to my ear, don’t worry, there was a wedding upstairs, these are their left overs, no sense in letting go to waste.
We ate first and used the rest of the dinner time to move around the room, greeting everyone making sure all was good. We danced the night away and finally crashed. I do not know what others do on their wedding night, we slept the sleep of the dead, grateful it was all over.
We stayed at L’Esterelle for a couple of days. Much needed rest and sleep.
The best part of the whole event was how impressed people were with the organization of the whole thing. It all went so smoothly. I have to thank the banquet whisperer for that.
Here we are thirty years later. Still together with a magnificent son who lights up our lives every day. Things are looking up in spite of the obvious.
Metaphors explain everything making things clearer. Such is this entry looking at our life as if hanging over the edge of a precipice, a hole waiting to claim our bodies while releasing the soul.
A second opinion appears to be a must in most situations. It generally is prompted by bad news, or a distrust of the first opinion.
A picture of the Armoury building in Toronto located on University Avenue. This picture was taken looking out onto University Avenue.
Could there be a more garish display of conflicting building structures? At once fascinating and jarring, this picture was taken in the Old Montreal district.
We had to install and AC unit to pacify the man with the chronic condition. Bad enough to have Chemo eating away at you without having to put up with the heat.