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.

What is it about second opinions that reassures people? I can see circumstances where you may want reassurance for something traumatic. In most cases, I doubt a secon opinion is very helpful.

I am not talking about construction projects, or the installation of a furnace. We moved into our house 11 years ago. Our furnace seemed to have trouble keeping the house warm. The air conditioner that was highly praised by the previous owner was barely useful. Nothing more than an air circulator. I talked with the representatives of about 6 different furnace manufacturers. Like most industries. there are very few actual manufacturers. What looks like a diverse field is dominated by a few companies that market several brands. All claimed to have the best unit on the market and cited one item that distinguished them from the others.

One had an electronic ignition which they claimed was useful in that it was more efficient. Do not need a pilot light. Just saved myself $10 a year. Another had an anti-static drum that would prevent the accumulation of dust on the air intakes. Fantastic feature guaranteed to work for three years at least. Another had a 12volt fan which could stay on for ever circulating the air around the house. Highly useful. I guess. I came away from the exercise more confused than when I went in.

We finally replaced our furnace about three years ago. We hired the same contractor this year to install our central air without going fro a second opinion. We trust the contractor. He did a stellar job the first time, and again now.

One of my cousins visited me recently. One of the first things she asked is whether I was having liver surgery. No, I said, no such plans. She suggested I might want to go to Germany for said operation. It would only cost about $2,000. I should not rely on the opinion of my one doctor here. She understands that we are living with the constraints of universal health care. They often will not perform operations or provide other services to save money. I should not let that hold me back. Germany has wonderful services.

I accused her of having Health Care prejudices. This opened a whole other set of issues which I will not go into, a waste of time.

This advice was given without having any idea about how our system works, or at least the system in this hospital. There is a panel of doctors who look after us. Major decisions are made by the panel, not the individual doctor. This is a truly amazing system. Not only do you get a second opinion, but you get five of them. By the time I was set for surgery, I had four separate opinions. Why go after another?

The situation gets more complicated. We do not appear to understand the why’s and wherefores of cancer. We do know that I do not have liver cancer, but colon cancer in the liver. Same situation in the lungs. I finally understand the meaning of metastasized cancer.

An operation of the liver is a waste of time. The cancer cells are busy in both halves of the liver. Taking one half out, letting the liver regenerate, means that the cancer will just travel from the other half back to the first.

Why in the world would I want to second guess my doctor anyways? What makes me think for a second that I know better than my doctor. Should I go to Germany for the operation, who will look after me post operation? I have an appointment to see my surgeon tomorrow morning. This is 9 months after the operation. We talk and make sure all is right. It is not a long meeting. Am I supposed to after another local surgeon look after my needs following an operation in another country? Does not make sense to me on any level.

We were told that we have the right to a second opinion at any time prior to the operation. We were told to feel free to go to the Mayo Clinic or anywhere else we thought might provide some additional information or help. No one here would hold that against us. After being in this system for a year, researching, reading and contemplating alternatives, I can say that the doctors appreciate it when you know more, when you take the time to educate yourself and take charge of your destiny. At least my doctors do.

I think a second opinion is required because we do not like or trust the first opinion. We are hoping that the bad news is not as bad as it appears to be and want to hear a second voice.

I generally deal with people I trust. I trust my family doctor. We have been together for fifteen years and understand each other. She is a modern medicine woman, dispensing drugs to heal all. Anyone not comfortable with that should seek the advice of a traditional medicine person.

I trust my oncologist and his entourage. I trust my surgeon and her entourage. I am happy with the decisions taken. I will add resources as I see fit, as I can accept them, understand their significance.

Went to see the oncologist yesterday with mixed results.

The last CT Scan we did was at the end of July, before the full diagnosis, and before the operation, and before the chemo, and just plain before.

Monday’s CT Scan revealed more cancer tumours and activities. This is to be expected. No treatments results in very active active cancer cells taking advantage of our largesse to promote their intent. Here we are, almost three months after the operation with more tumours, not less.

This had surprisingly little effect on me. Dr. Hedley is amazingly re-assuring and positive through all things. He went through checking me out prior to discussing the results of the test. He prodded and probed and was amazed at the excellent condition of my stomach muscles. I really have no way of judging these things, but I am apparently in better shape than we thought.

A CEA blood test was done, the results of which will be available in 10 days. I have discussed this test before, but for those of ailing memory, here is a link with an explanation. It is not a conclusive test, but it does give us an idea of the direction of the healing. We left the good doctor in good humour. He gave me a hug. I mean, what kind of a heartless doctor gives his patient a hug? Told you he was good.

His basic premise is that I am well if I am feeling well. There are good points and bad to this. I was feeling well at the beginning of July in spite of this invasion, until I felt bad. But I tend to agree with him overall. Feeling pretty good, mentally and physically. Getting stronger. Putting on weight to the point where I might have to go on a see-food diet. The general prognosis is is that I am improving and the cancer must be in full retreat. 10 days.

My voice is, as always, the barometer of my health. It is weaker than I would like it to be. But this is the end of chemo week and the start of mighty and strong week.

Addendum

We received some results from the blood test that would lead us to believe that I am doing very well indeed. The tests involved levels of

Test old value new value normal range
ALP 403 149 30 to 120
ALT 67 33 5 to 35
LD 588 257 100 to 190

The normal range is listed below. The information below has been copied from enotes.com. They provide a very comprehensive explanation of what these things are.

Results

Reference ranges vary from laboratory to laboratory and also depend upon the method used. However, normal values are generally framed by the ranges shown below. Values for enzymes are based upon measurement at 37°C.

  • ALT: 5-35 IU/L (values for the elderly may be slightly higher, and values also may be higher in men and in African-Americans).
  • AST: 0-35 IU/L.
  • ALP: 30-120 IU/LALP is higher in children, older adults and pregnant females.
  • GGT: males 2-30 U/L; females 1-24 U/L.
  • LD: 0-4 days old: 290-775 U/L; 4-10 days: 545-2000 U/L; 10 days-24 months:180-430 U/L; 24 months-12 years:110-295 U/L; 12-60 years:100-190 U/L; 60 years: >110-210 U/L.
  • Bilirubin: (Adult, elderly, and child) Total bilirubin:0.1-1.0 mg/dL; indirect bilirubin: 0.2-0.8 mg/dL; direct bilirubin: 0.0-0.3 mg/dL. (Newborn) Total bilirubin: 1-12 mg/dL. Note: critical values for adult: greater than1.2 mg/dL. Critical values for newborn (requiring immediate treatment): greater than 15 mg/dL.
  • Ammonia: 10-70 micrograms per dL (heparinized plasma). Normal values for this test vary widely, depending upon the age of the patient and the type of specimen.
  • Albumin: 3.2-5.4 g/L.
© 2010 I Have Cancer Suffusion theme by Sayontan Sinha