I have not written an update in a while. I am stuck between the three thoughts at the moment, the third is the most personal and complicated of the three. Not sure when that will emerge from the dark recesses of my feeble brain.. The first has to do with the legacy we leave behind. That should be out next week sometime. I have also been asked to give some thought to the concept of the Mysteries of Healing. Janet tells me I am not doing a very good job of that and should maybe talk about the Mysteries of Coping.

I have also not provided you with an update of my situation. Things are moving at a rapid rate. Not the death rattle, just changes in the body and the mind. When discussing matters with doctors, I have to be careful to note that what we are talking about is taking place over the matter of days. No pain means since last time we spoke, nothing longer.

Our meeting with the angelic Dr. Hedley has now been well documented and read. My care has been moved to Palliative at the Princess Margaret Hospital. The best part of palliative is that they are totally focused on quality of life. Nothing else really matters at this point. Eat what you what, drink what you want, do not, under any circumstances be in pain.

Pain is not good for you at any time. The doctors, from the very beginning have made it very clear that pain is not something to be bourne. It has to be controlled. We have a tendency to think we should be manly and bear the pain. Good for the soul, builds character, makes a man out of you. Chin up, pull up your socks. What every single doctor and nurse tells you is the opposite. Get rid of your pain immediately. The body cannot and will not heal as long as it dealing with the pain. It cannot. Killing the pain might mask the symptoms. Mask away. The body needs time to heal. Get rd of the pain short term, heal, get off the pills.

Palliative is big on pain relief. Most of my conversations with everyone begins with are you in pain? The answer is really I have no idea. I have pain killers that are taking care of that for me, thank you very much. When in pain, take more pills. Most of my pain comes in the middle of the night when the liver decides to wake me up. I take a 2mg dose of a morphine derivative called Dilauded, and one Extra Strength Tylenol. Relief comes within thirty minutes. Unless I have a lot of thoughts churning, I am usually asleep asleep soon after the thirty minutes. Other nights are like this one, were I get up and do something.

I take a 3mg dose of Dilauded twice a day. Along with some steroid and a stomach calmer so the drugs do not damage my stomach lining. That seems to do the trick most days. Hardly a heavy dose of anything. Everyone seems a bit surprised I do not need more pain killers. I also take a couple of table spoons of Luctalose, an over the counter drano for the body. I take those three times a day. All of this is directed to my liver. The Luctalose helps the drain with its cleaning duties flushing things out. Appears to work. No constipation that I know of.

The liver is an interesting organ. More so at this point of my life. It is charged with keeping the system clean. It seems to be performing that right now to an amazing degree. It inflames, specially if I get upset over anything. That effect has been well documented, both in the world of science, and by my now fragile body. Lying on my left side is the worst, since the liver flops over and puts pressure on everything. Right is better. Back is the best, but there are only so many hours I can spend on my back. Really boring after a while. I groan when I roll around, which is not good. Keeps waking up Janet. I can hear her breathing stop as she attempts to take notes of the level of groans, waiting for them to stop. I cannot control them.

We went to see the doctor last week. They are concerned about the inflammation of my legs. Water retention, something called edema. My legs are swollen from the toes all the way up. We got tensor socks today that go all the way up. Janet has to help me put them on. I cannot bend over that far, and cannot get back up if I do. I am losing more and more control over things. Emotionally debilitating. This too shall pass. We have managed to handle everything else so far. You need rubber gloves to get the socks on over all the swelling. They helped instantly. I was amazed by the reaction of both legs to them. Put them on first thing in the morning, take them off last.  Janet then applies a generous dose of Aveno body cream to the legs and arms. Let the cream dry a bit, and off to sleep.

I had a nose bleed a could of nights ago. I went from asleep to fast awake in seconds. Just felt a dribble coming out of my nostril I have become so sensitive to the signals the body is sending. The bleeding lasted about twenty minutes, then stopped as abruptly as it had started. Every day is a surprise.

I started telling about the visit to the doctor. Their concern led them to giving me an ultra sound of the legs to make sure there are no blood clots. Cancer patients are susceptible to them at the best of times, needing no further encouragement from edema. I have no clots.

They then did a blood test. My numbers are as good as that of any healthy person. My liver enzymes that indicate cancer tumor activity showed a 20% increase. Sounds bad, except that the numbers had tripled between September and the end of October. Now, a mere 20% growth. All good news. I was furious. I can feel the body failing in some respects. My strength is way down. I am watching my muscles disappear. I have stopped driving because I do not trust my reflexes any more. I am not sure I can lift my leg to hit the brakes. The blood results are making a mockery out of everything.

Then the nose bleed.

We have transitioned the palliative care to the home care nurses. That is the way the system works. Less expensive for them to come to me. The home care doctor came to see us last Monday. We went through the history. talked about everything that was annoying us. They cannot help us any more than we are doing. We are in fine shape and should just continue. That is just the way of the new world.

The solution to the edema is interesting. The issue is that the water gets to the legs but cannot travel back out. This is the normal process for all you healthy people out there. It gets stuck in the legs. My stomach is experiencing water retention as well. The solution to the legs is to drain the stomach. The water travels back filling up the stomach which is drained again, and again, and again. A two week process. Are you kidding me??? Leave things as they are. We will stick to the socks for now.

The doctor prescribed another pill to take once a day. A diuretic. One of the side effects may be drowsiness, and maybe a lowering of my blood pressure which has been perfect through this whole adventure.  I took my first one yesterday morning and passed out for three hours. We were planning on going to the One of a Kind Show, renting an electric scooter of some kind. We had to cancel. I was livid. Cannot even have one sane day.

I am on oxygen. A machine in my office provides all the oxygen I could possibly need. Use it mostly when I have visitors. Lose my breath when I talk, some might add talk too much. A factory of air supplying me with energy. Oxygen has no smell or taste. Hard to know whether it is working or not, though I must say, it seems to work in the short term allowing me to participate in a conversation. I have an additional set of tanks, one of which is small and I can take with me.  I was going to take one with me to the show. I have had a lot of problems adjusting to the tanks. They seem to carry a signal of doom around them. This is passing slowly. Taking the tank with me on every excursion helps dissipate whatever anxiety I may over it.

Life throws a curve, we counter with a base hit, a fly ball, eventually a home run. Most things appear to lose their importance after a while. I still have a pulse and get to enjoy the company of friends and relatives. What I do miss though is doing the absurdly mundane and boring things we so take for granted. Going out to look at bathroom sinks and toilet. Shoot me now.

The show runs next week as well. We are keeping Tuesday clear for that.

The house has been full of people for the past month or so, to the point where we are all looking at each other askance. Contrary to my Visits post, we have started curtailing the visits controlling the times a bit better, giving us all a bit of a breather. This has been a quiet week. Saturday will be very busy and promises to be a fun day. Lisa is coming over to watch a couple of episodes of Dr Who with me. Shawn is also joining us.She make some popcorn and away we go into the adventures of a time lord. What could possibly be more fun.

I have a nurse coming over tomorrow to take some blood for testing and check me out. The result of crashing yesterday morning and the nose bleed. They are concerned about the platelet counts dropping to low. The solution to that is a transfusion. The crashing could be due to the blood pressure dropping. Either way, I am off the diuretic for now. I suggested to them that I could take the diuretic at 5 in the morning. Its negative effects will be over by 9. Nurse coming at 10, should be perfect. They did not bite. The diuretic has the desired effect of making me pee a lot. That is supposed to help with draining the water from my legs. For some reason, they would not put a tap in my toes.

I think I have rambled enough for one night. Will write more as situations develop.

This blog has been very helpful helping me clear my thoughts, allowing me to better handle all the curves. I thank for taking the time to read, and specially to comment.

The level of confusion, for want of a better word is amazing. On the one hand, it is good news. Let the chemicals run through their routine and exit the system.

Take a couple of months off to reassess the situation.

Ponder the meaning of life.

Start working on all my projects.

Keep away from the routine of the hospital.

Janet was talking the other day about this situation. You start on this adventure in a bit of a daze. You ask a bunch of questions. According to Janet I was asking my fair share of questions. Except that I was repeating my questions. I was getting answers and repeating the same questions. As I said, in a bit of a daze.

You acquiesce to the advice given by the doctors. Specially if you like them. They seem to know what they are doing. Dr. Heldey has a huge collection of articles to his credit. Surely, he knows a lot of stuff about colon cancer and its metastasized state. He is very reassuring. All we can do is follow his advice.

There is a lot of talk of alternatives to the traditional medicines. There are no proofs, just a lot of information. It is very hard to sift through all the information. We have discovered that you tend to make sense of the information as time goes by, as the need arises to make sense of things. So much of the information is anecdotal. We have no idea if people are responding to the medication, the alternative choices, or not.

I have always maintained that I will not live just for the sake of living. I will not go through a regime that seems to be more work than it is worth. What price is life worth living for? All this work and you live an extra two years. Is it worth it? Probably to the people around you, but not for the person going through the chronic condition. At least not to this one. I keep reading about people going through all sorts of programs to live longer. Why the compulsion to live at any cost?

The health network has looked after me for the past year. Diagnosis, operation, Chemo. Everyone looking after the chronic. With a smile, a laugh and a hug. You, the chronic are being looked after by all these people. The chronic is not doing anything, while things are done to him. We are a bit powerless. Go to the hospital, give blood, get Chemo. Make sure you have taken your drugs before the Chemo. Go home, sleep, rest, make the best of the situation.

We have to move now from having things done to us to deciding what we need to do for ourselves. We have to follow through with some of the stuff we have been reading about. Make sense of all the messages we are getting. Again, sift through everything and make decisions.

I find the situation very confusing. Again not sure if that is the right word. I have a lot of projects to work through, a lot of time to figure things out.

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.

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.

Surprise! We get Avastin today. Dr. Hedley feels that enough time has gone by for me to have healed. Damn the creation of blood vessels. Full steam ahead. 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 [...]

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