What are the odds that someone in my family develops influenza A (H1N1) the week we've been vaccinated? I do not know but it happened. My little Elodie 6 years old started having symptoms the same day that we have been vaccinated. The whole family was vaccinated at home because of my health status. We were very pleased to receive this service. But after three days of intense fever, Mom went with Elodie to the Lakeshore hospital emergency where Grandma works. In a snap, they diagnosed Élodie with strep throat. They still proceeded to test for influenza A (H1N1). In the evening we received a call, the test is positive for influenza. Is it H1N1, we'll know later. Friday evening, another call IT IS H1N1. Emergency procedures are put in place, everyone wears a mask. Marie-Josée disinfected the entire master bedroom and adjoining bathroom so that I can be in quarantine. No contact with Elodie, or even the boys. Marie-Josée brings me my food with gloves and a mask. She is the only one to come in and out of our room. I talk to my children from a distance. All this affects Jordan quite a bit, he saw the news of the boy who died and is totally stressed.
I try to tell them to take this as an adventure. We must be diligent and keep our masks on and wash our hands more often than not. Given the period of contagion, we must keep this protocol until Tuesday at least, unless another child or Marie-Josee develops symptoms. Currently Jordan is a little bit tired but he does not seem to have the flu ... yet.
I started on Tamiflu for prevention and I remain isolated, I am not taking chances.
I will keep you posted.
Santé!
Saturday, November 7, 2009
Friday, October 23, 2009
October 23rd, 1965 -
It's my birthday. No this is not the beginning of my epithet. I am 44 years old today. 15 months post diagnosis and 4 ½ months after surgery.
The situation is stable. The markers are 9.7 (4.4, 9.5, 8 and 9.7). The scan does not show anything significant according to my hematologist. By pushing a little, he explains that inflammation is visible around the stomach in the region of the anastomosis, but it's nothing unexpected considering what has happened in my abdomen in June . As for cancer nothing is visible, which is a good sign. We will continue the hunt to catch it as it appears.
This is my third treatment with the addition of irinotecan. After 48 hours it goes well ... it is OK. I will not deny that this combination weakens me more. I am really lying down for 48 hours not eating much. After I gradually introduce food according to my hunger. This morning toast with peanut butter with green tea. At noon a mini salad: boiled egg, cherry tomato, feta cheese with a dressing made of olive oil, turmeric, black pepper, balsamic vinegar small green onions (scallions).
Tonight at 20:30, a dish of vegetable couscous with red cabbage salad, half a pita with garlic sauce, washed down with fruit juice.
I'll get a final green tea in front of the fireplace where Jordan started a fire and then take drugs just to sleep until tomorrow.
Good Health!
The situation is stable. The markers are 9.7 (4.4, 9.5, 8 and 9.7). The scan does not show anything significant according to my hematologist. By pushing a little, he explains that inflammation is visible around the stomach in the region of the anastomosis, but it's nothing unexpected considering what has happened in my abdomen in June . As for cancer nothing is visible, which is a good sign. We will continue the hunt to catch it as it appears.
This is my third treatment with the addition of irinotecan. After 48 hours it goes well ... it is OK. I will not deny that this combination weakens me more. I am really lying down for 48 hours not eating much. After I gradually introduce food according to my hunger. This morning toast with peanut butter with green tea. At noon a mini salad: boiled egg, cherry tomato, feta cheese with a dressing made of olive oil, turmeric, black pepper, balsamic vinegar small green onions (scallions).
Tonight at 20:30, a dish of vegetable couscous with red cabbage salad, half a pita with garlic sauce, washed down with fruit juice.
I'll get a final green tea in front of the fireplace where Jordan started a fire and then take drugs just to sleep until tomorrow.
Good Health!
Sunday, September 20, 2009
Life with cancer, perspective of natural care-giver
Let me share with you how I live daily with Martin's cancer. As you may imagine, I lived through all kinds of emotions, amd I'll continue to do so: shock, anger, denial, sadness ...
These emotions are surfacing at any time without warning. A song, a look, a hug, a comment and BANG! But eventually I was able to accept them and say tell myself: they are only passing through. Then we return to our life, one child asks for a glass of milk and life continues.
Luckily life gave me a great mental and physical strength, perhaps in anticipation of what would happen later. That determination combined with Martin's made us break down doors to get answers. We really took over the illness and as you know so well "no" was never an option for us. The most amazing is that the days when the strenght dips in one of us, the other hastened to restore it. Martin and I are definitely an amazing team.
The disruption that followed the diagnosis in July 2008 quickly gave way to a new routine. One comes to accept the disease, it is part of the family dynamics and it revolves around it. I assure you that the days where he is top shape, we take full advantage of it. The other days we surround him with our love while he recovers. My sadness on thos difficult chemo days is now replaced by my appreciation of the fact that he is still with us and he leads the battle with such humility and courage. I consider myself so lucky to have him in my life.
The most difficult for me in this adventure is the uncertainty. The resulting insecurity of our children saddens me. Anecdote, during a recent business trip to Toronto, my daughter called me several times saying: "But Mom when are you coming back? What happens if Dad is sick without you, we're children and can not care for him. "I did my best to reassure her.
When people ask me the question but how do you do it? I'd say my salvation over the past 14 months was to keep busy, taking charge of the medical file, taking care of my loved ones, my career keeps me busy and of course running. The more I keep busy with projects, the better for me.
In conclusion, I would encourage you to break your silence and show your support by writing to us. I know many of you read the blog and send positive vibes. If only you would see the smile on Martin's face when one of his faithful readers leaves a word of encouragement. It feeds him for the day!
We continue the battle and we need you all. After all, strength is in unity ;-)
Yours truly,
Marie-Josee
The wife of a cancer survivor
These emotions are surfacing at any time without warning. A song, a look, a hug, a comment and BANG! But eventually I was able to accept them and say tell myself: they are only passing through. Then we return to our life, one child asks for a glass of milk and life continues.
Luckily life gave me a great mental and physical strength, perhaps in anticipation of what would happen later. That determination combined with Martin's made us break down doors to get answers. We really took over the illness and as you know so well "no" was never an option for us. The most amazing is that the days when the strenght dips in one of us, the other hastened to restore it. Martin and I are definitely an amazing team.
The disruption that followed the diagnosis in July 2008 quickly gave way to a new routine. One comes to accept the disease, it is part of the family dynamics and it revolves around it. I assure you that the days where he is top shape, we take full advantage of it. The other days we surround him with our love while he recovers. My sadness on thos difficult chemo days is now replaced by my appreciation of the fact that he is still with us and he leads the battle with such humility and courage. I consider myself so lucky to have him in my life.
The most difficult for me in this adventure is the uncertainty. The resulting insecurity of our children saddens me. Anecdote, during a recent business trip to Toronto, my daughter called me several times saying: "But Mom when are you coming back? What happens if Dad is sick without you, we're children and can not care for him. "I did my best to reassure her.
When people ask me the question but how do you do it? I'd say my salvation over the past 14 months was to keep busy, taking charge of the medical file, taking care of my loved ones, my career keeps me busy and of course running. The more I keep busy with projects, the better for me.
In conclusion, I would encourage you to break your silence and show your support by writing to us. I know many of you read the blog and send positive vibes. If only you would see the smile on Martin's face when one of his faithful readers leaves a word of encouragement. It feeds him for the day!
We continue the battle and we need you all. After all, strength is in unity ;-)
Yours truly,
Marie-Josee
The wife of a cancer survivor
Friday, September 11, 2009
How much is life worth?
It's Friday 4:00 PM. François just disconnected my 5-FU bottle. I have not slept as much as I would of liked today, but now that my bottle is off I'll try to get an hour of sleep (after writing this of course).
I got feedback on my last blog. The consensus is that I should write more regularly, even if only to say that all is well. So I told myself that I would try to have some regularity, say once a week.
Yesterday, Barry Stein sent me an article published in the Globe and Mail, written by Andre Picard, which was attached to his reply as president of the Colorectal Cancer Association of Canada. My wife was furious after reading the article and has also written to the journalist. The latter replied almost immediately (it was midnight). For my part, the article kinda upset me a little. As my wife mentioned in her email to the journalist, to be able to write this kind of thing you can't possibly have lived the horrors of cancer, near or far.
The article is titled: We do have to put a price on life. You can read it by clicking the title or just keep reading because I reproduce the article and the response from Barry and Marie-Josée's e-mail.
Before let me give you my opinion which I have not sent to Mr. Picard. Every citizen is entitled to his opinion and as a journalist he has the right to try to raise a debate on a matter of public interest because our health system is financed by the government (so all of us). However I find unhealthy to oversimplify complex ethical questions. The basis of his text is an article published in the United States by two oncologists who supposedly analyzed the cost-benefit of the use of certain new drugs against cancer. Mr. Picard does not seem to have made a critical reading of the text in question because he has not made the effort to check prices in Canada which are lower than those cited. Then, what bugs me the most is that they look at the statistical median to question the effectiveness of drugs. As you know, I decided not to worry about statistics, especially the median, because when we speak of human life and death, the average is worth shit. I can not imagine they would refuse a potentially life-saving treatment based on the fact that the average survival is not long enough. If that person was one that was above the median. Worse, in statistics they take out outliers. So somebody could survive 15 years and it would not influence the average because it is not part of the calculation. In any case, I am very happy that, thanks to Barry, the Quebec government reimburses Avastin (bevacizumab), I could not have fought advanced cancer successfully without it. I have 14 months of survival that is already more than the median that of clinical studies show, and I know I'm going to extend this figure by far (like 35 years). Imagine if Mr. Picard refused to treat me with Avastin, he would have made a great mistake.
I initially said it was unhealthy as a discussion point because if we consider the cost in all our actions we would not have finished analyzing all kinds of expenses. Should we try to rehabilitate hardened criminals or simply reinstate the death penalty? Prisons cost a lot of money don't they? Should we keep a coast guard to go rescue people at sea at astronomical costs (helicopters are expensive). Why do ministers travel in limousine instead of a Honda Fit? It's a dumb question, right? That's what I think of his' as well.
Here is the article and Barry's response:
Original Article is copied below.
Dear Sirs,
As a colorectal cancer survivor and as president of the Colorectal Cancer Association of Canada, I read with great interest André Picard’s article of September 10, 2009, “We do have to put a price on Life”. I was in fact quite dismayed by the position of the author and by the absence of many important facts weighing heavily in favour of the new targeted therapies mentioned in the article.
First and foremost is the fact that many patients taking these medications have had the opportunity to extend their lives for periods much greater than as represented in the article. In fact, in combination with other chemotherapy drugs traditionally used in the treatment of colorectal cancer, patients have been able to extend their lives by almost two years. One might recall that in 1996 the mean survival was approximately one year.
Second, patients whose disease did not originally permit the surgical removal of their cancer may further benefit from these therapies. In some cases, patients are able to prolong their lives or even obtain a cure by having surgery to remove their cancer after having received treatments that include these new therapies.
In provinces that have not as yet covered the cost of some of these new drugs, patients are obliged to personally cover the costs or forgo treatment recommended by their physicians. In some cases, patients are even forced to leave the country to obtain access to the standard of care they should receive in Canada in accordance with treatment guidelines.
While the costs of these new cancer therapies are significant, they are in line with the costs of other medications for other diseases such as heart disease, and to my understanding they are not as high as quoted in the article.
These new targeted therapies are pointing the way to the future of cancer treatment. It is true no home run has as yet been hit, however steady progress is being made and we must ensure that Canadians have equal and timely access to the standard of care in the treatment of their disease. These are not drugs of desperation and they do provide a real and significant increase in survival and in the quality of life to cancer patients.
Barry D. Stein
President Colorectal Cancer Association of Canada
Andre Picard
Last updated on Thursday, Sep. 10, 2009 09:06AM EDT
How much is a life worth? What price can we put on extending a life for a few years, a few months or a few days?
Increasingly, those are questions that, however unsettling, need to be asked, particularly in the cancer field.
There are a growing number of cancer therapies. They are increasingly expensive.
And many produce only a short extension of survival. That combination can pose some serious dilemmas, clinical as well as ethical.
The issue is underscored by a recent article in the Journal of the National Cancer Institute.
Tito Fojo, a medical oncologist at the U.S. Center for Cancer Research at the National Cancer Institute, and Christine Grady of the department of bioethics at the U.S. National Institutes of Health.
The pair published some hard data on the costs and benefits of several high-profile cancer drugs that help provide some important perspective for this discussion.
Here are some examples to ponder:
Cetuximab (brand name Erbitux) is a drug used to treat lung and colorectal cancer. Treatment costs $80,352 (U.S.) and increases survival by 1.2 months.
Bevacizumab (Avastin) is used to treat lung, colorectal and breast cancer. A course of treatment costs $90,816 and it extends survival by 1.5 months.
Erlotinib (Tarceva) is used to treat lung and pancreatic cancer. Treatment costs $15,572 and the drug extends survival by 10 days.
Sorafenib (Nexavar) is used to treat kidney cancer and advanced skin cancer. A course of treatment costs $34,373 and it extends survival by 2.7 months.
These figures are, in themselves, thought provoking. But they tell only part of the story.
Every one of the cancer drugs cited is essentially a drug of desperation. They are used only after many other surgical interventions and drug treatments have failed.
As with all drugs, there are also side effects, in many cases debilitating ones. This reminds us that survival needs to be measured in more than days kept alive.
Let's take a more in-depth look at one of the drugs, cetuximab. It was a highly anticipated drug because it tackled cancer in a new way.
In May of this year, the medical journal The Lancet published the results of a study about the use of cetuximab to treat non-small-cell lung cancer.
The researchers concluded that adding the drug to the standard platinum-based chemotherapy drugs cisplatin and vinorelbine "sets a new standard" for the treatment of patients.
One month later, at the conference of the American Society of Clinical Oncology, which is considered the world's most important cancer meeting, it was stated that the findings "are likely to have a significant impact on the care of patients."
Neither the published paper nor the press briefing touting the wonders of the drug underscored that many patients treated with cetuximab suffered severe febrile neutropenia (a combination of fever and low white blood cell count that puts patients at risk of infection), along with diarrhea and rashes.
Nor do those singing the praises of the drug much like to talk about its cost. The $80,000 cost for an 18-week treatment is also misleading. That is the cost of the drug, and does not include the time of health professionals to perform the infusion and related tests nor the cost of treating side effects.
In their paper, Dr. Fojo and Dr. Grady offered this dispassionate analysis of the data: "The only reasonable conclusion is that a magic anti-cancer bullet aimed at an important target missed by a wide margin."
They describe cetuximab, bluntly but fairly, as a "treatment offering marginal benefit at very high cost."
Survival rates for most cancers have risen steadily for a number of years. But cancer is still a big killer.
Last year, an estimated 166,400 Canadians were diagnosed with cancer and about 73,800 died.
In cancer treatment, everyone hopes against hope but, at some point, the disease often gets the upper hand.
As treatments become more desperate, we need to ask ourselves some tough questions, many of which Dr. Fojo and Dr. Grady set out in their paper: What should count as a benefit in cancer treatment? What is the minimum amount of benefit required to adopt a new drug therapy? In the case of cetuximab, is 1.2 months of additional life a "good" in itself? Or does the quality of life during that time matter? And does cost matter?
There are those who will protest that cost should not be an issue when treating someone with a grave illness such as cancer. But, however callous it may seem, cost must be an issue and a cost-benefit analysis must be done.
In our health-care system, money is not unlimited. The $80,000 spent on cetuximab to potentially extend a person's life by a few weeks could be used in other ways and, undoubtedly, to more effect.
For example, is money best spent on a desperation drug with limited effect or on palliative care for dying cancer patients?
The all-too-common practice of administering new, marginally beneficial drugs to dying cancer patients is a losing proposition, for the patient, the health system and society at large.
Yes, every life is precious, some would say of infinite value.
But we have to stop deluding ourselves. People will die of cancer. Every reasonable effort should be made to ensure a good life and a good death.
But that does not mean mindlessly throwing huge sums of money at so-called miracle drugs.
Quality of life matters - for everyone.
Correspondance between Marie-Josée and André Picard (translated by myself since it was originally in french)
From André Picard
That is precisely the challenge: How to target treatments to maximise benefits to the individual and society.
It's another huge challenge created by cancer which as you said is already cruel and ungrateful.
-----Original Message-----
From: Marie-Josée Lafrance
Sent: 10 septembre 2009 23:59
To: Picard, Andre
Subject: Re: article cancer
Thank you! The question remains how do we know in advance if the patient will ahve marginal benefits or like my husband a very favorable response to therapy. Food for thought.
Picard, Andre wrote:
> Thank you for your comments but I beg to differ, the public needs to have those discussions and debate.
> It is remarkable that your husband benefited from Avastin (and other interventions) and that he is in remission. But a lot of patients do not benefit as much from these costly treatments. In those cases money would be better spent in palliative care.
> That is reality. We must be realistic, and not create false hope.
> Santé!
> André
> -----Original Message-----
> From: Marie-Josée Lafrance
> Sent: 10 septembre 2009 23:18
> To: Picard, Andre
> Subject: article cancer
> M. Picard
> I read your article on the astronomica costs of medications and became nauseous.
> My husband was diagnosed with colon cancer (inoperable) in July 2008. A 30 cm (12 in) tumour was reaching far up touching his liver stomach and kidneys in addition to his peritoneal wall. His life expectancy was a few months only
> Well, thanks to Avastin combined with other chemotherapy treatments, he is still alive 14 months after diagnosis and he bacame eligible for surgery in June 2009. He went through surgery combined with a state of the art technic called HIPEC, which is hot chemo directly into his abdomen. Cancer is 98% gone and he is in remission and doing pretty well today. He was able to see our daughter start in grade 1 in September.
> How can clinical studies show differences inlongevity with or without medication when age, cancer spread, type of cancer, personal predisposition, medical history are all factor that influence outcome
> My husband is 42 and still alive to see his children grow thanks to Avastin. Without this medication he would not be here anymore. Life does not have a price. ¨
>It is apparent to me, sir, that severe illness never touched you.
> Cancer is already cruel and ungrateful enough as it is. The public does not need articles like yours to take away their hope.
> Santé!!
> The Spouse of a cancer survivor
I got feedback on my last blog. The consensus is that I should write more regularly, even if only to say that all is well. So I told myself that I would try to have some regularity, say once a week.
Yesterday, Barry Stein sent me an article published in the Globe and Mail, written by Andre Picard, which was attached to his reply as president of the Colorectal Cancer Association of Canada. My wife was furious after reading the article and has also written to the journalist. The latter replied almost immediately (it was midnight). For my part, the article kinda upset me a little. As my wife mentioned in her email to the journalist, to be able to write this kind of thing you can't possibly have lived the horrors of cancer, near or far.
The article is titled: We do have to put a price on life. You can read it by clicking the title or just keep reading because I reproduce the article and the response from Barry and Marie-Josée's e-mail.
Before let me give you my opinion which I have not sent to Mr. Picard. Every citizen is entitled to his opinion and as a journalist he has the right to try to raise a debate on a matter of public interest because our health system is financed by the government (so all of us). However I find unhealthy to oversimplify complex ethical questions. The basis of his text is an article published in the United States by two oncologists who supposedly analyzed the cost-benefit of the use of certain new drugs against cancer. Mr. Picard does not seem to have made a critical reading of the text in question because he has not made the effort to check prices in Canada which are lower than those cited. Then, what bugs me the most is that they look at the statistical median to question the effectiveness of drugs. As you know, I decided not to worry about statistics, especially the median, because when we speak of human life and death, the average is worth shit. I can not imagine they would refuse a potentially life-saving treatment based on the fact that the average survival is not long enough. If that person was one that was above the median. Worse, in statistics they take out outliers. So somebody could survive 15 years and it would not influence the average because it is not part of the calculation. In any case, I am very happy that, thanks to Barry, the Quebec government reimburses Avastin (bevacizumab), I could not have fought advanced cancer successfully without it. I have 14 months of survival that is already more than the median that of clinical studies show, and I know I'm going to extend this figure by far (like 35 years). Imagine if Mr. Picard refused to treat me with Avastin, he would have made a great mistake.
I initially said it was unhealthy as a discussion point because if we consider the cost in all our actions we would not have finished analyzing all kinds of expenses. Should we try to rehabilitate hardened criminals or simply reinstate the death penalty? Prisons cost a lot of money don't they? Should we keep a coast guard to go rescue people at sea at astronomical costs (helicopters are expensive). Why do ministers travel in limousine instead of a Honda Fit? It's a dumb question, right? That's what I think of his' as well.
Here is the article and Barry's response:
Original Article is copied below.
Dear Sirs,
As a colorectal cancer survivor and as president of the Colorectal Cancer Association of Canada, I read with great interest André Picard’s article of September 10, 2009, “We do have to put a price on Life”. I was in fact quite dismayed by the position of the author and by the absence of many important facts weighing heavily in favour of the new targeted therapies mentioned in the article.
First and foremost is the fact that many patients taking these medications have had the opportunity to extend their lives for periods much greater than as represented in the article. In fact, in combination with other chemotherapy drugs traditionally used in the treatment of colorectal cancer, patients have been able to extend their lives by almost two years. One might recall that in 1996 the mean survival was approximately one year.
Second, patients whose disease did not originally permit the surgical removal of their cancer may further benefit from these therapies. In some cases, patients are able to prolong their lives or even obtain a cure by having surgery to remove their cancer after having received treatments that include these new therapies.
In provinces that have not as yet covered the cost of some of these new drugs, patients are obliged to personally cover the costs or forgo treatment recommended by their physicians. In some cases, patients are even forced to leave the country to obtain access to the standard of care they should receive in Canada in accordance with treatment guidelines.
While the costs of these new cancer therapies are significant, they are in line with the costs of other medications for other diseases such as heart disease, and to my understanding they are not as high as quoted in the article.
These new targeted therapies are pointing the way to the future of cancer treatment. It is true no home run has as yet been hit, however steady progress is being made and we must ensure that Canadians have equal and timely access to the standard of care in the treatment of their disease. These are not drugs of desperation and they do provide a real and significant increase in survival and in the quality of life to cancer patients.
Barry D. Stein
President Colorectal Cancer Association of Canada
Andre Picard
Last updated on Thursday, Sep. 10, 2009 09:06AM EDT
How much is a life worth? What price can we put on extending a life for a few years, a few months or a few days?
Increasingly, those are questions that, however unsettling, need to be asked, particularly in the cancer field.
There are a growing number of cancer therapies. They are increasingly expensive.
And many produce only a short extension of survival. That combination can pose some serious dilemmas, clinical as well as ethical.
The issue is underscored by a recent article in the Journal of the National Cancer Institute.
Tito Fojo, a medical oncologist at the U.S. Center for Cancer Research at the National Cancer Institute, and Christine Grady of the department of bioethics at the U.S. National Institutes of Health.
The pair published some hard data on the costs and benefits of several high-profile cancer drugs that help provide some important perspective for this discussion.
Here are some examples to ponder:
Cetuximab (brand name Erbitux) is a drug used to treat lung and colorectal cancer. Treatment costs $80,352 (U.S.) and increases survival by 1.2 months.
Bevacizumab (Avastin) is used to treat lung, colorectal and breast cancer. A course of treatment costs $90,816 and it extends survival by 1.5 months.
Erlotinib (Tarceva) is used to treat lung and pancreatic cancer. Treatment costs $15,572 and the drug extends survival by 10 days.
Sorafenib (Nexavar) is used to treat kidney cancer and advanced skin cancer. A course of treatment costs $34,373 and it extends survival by 2.7 months.
These figures are, in themselves, thought provoking. But they tell only part of the story.
Every one of the cancer drugs cited is essentially a drug of desperation. They are used only after many other surgical interventions and drug treatments have failed.
As with all drugs, there are also side effects, in many cases debilitating ones. This reminds us that survival needs to be measured in more than days kept alive.
Let's take a more in-depth look at one of the drugs, cetuximab. It was a highly anticipated drug because it tackled cancer in a new way.
In May of this year, the medical journal The Lancet published the results of a study about the use of cetuximab to treat non-small-cell lung cancer.
The researchers concluded that adding the drug to the standard platinum-based chemotherapy drugs cisplatin and vinorelbine "sets a new standard" for the treatment of patients.
One month later, at the conference of the American Society of Clinical Oncology, which is considered the world's most important cancer meeting, it was stated that the findings "are likely to have a significant impact on the care of patients."
Neither the published paper nor the press briefing touting the wonders of the drug underscored that many patients treated with cetuximab suffered severe febrile neutropenia (a combination of fever and low white blood cell count that puts patients at risk of infection), along with diarrhea and rashes.
Nor do those singing the praises of the drug much like to talk about its cost. The $80,000 cost for an 18-week treatment is also misleading. That is the cost of the drug, and does not include the time of health professionals to perform the infusion and related tests nor the cost of treating side effects.
In their paper, Dr. Fojo and Dr. Grady offered this dispassionate analysis of the data: "The only reasonable conclusion is that a magic anti-cancer bullet aimed at an important target missed by a wide margin."
They describe cetuximab, bluntly but fairly, as a "treatment offering marginal benefit at very high cost."
Survival rates for most cancers have risen steadily for a number of years. But cancer is still a big killer.
Last year, an estimated 166,400 Canadians were diagnosed with cancer and about 73,800 died.
In cancer treatment, everyone hopes against hope but, at some point, the disease often gets the upper hand.
As treatments become more desperate, we need to ask ourselves some tough questions, many of which Dr. Fojo and Dr. Grady set out in their paper: What should count as a benefit in cancer treatment? What is the minimum amount of benefit required to adopt a new drug therapy? In the case of cetuximab, is 1.2 months of additional life a "good" in itself? Or does the quality of life during that time matter? And does cost matter?
There are those who will protest that cost should not be an issue when treating someone with a grave illness such as cancer. But, however callous it may seem, cost must be an issue and a cost-benefit analysis must be done.
In our health-care system, money is not unlimited. The $80,000 spent on cetuximab to potentially extend a person's life by a few weeks could be used in other ways and, undoubtedly, to more effect.
For example, is money best spent on a desperation drug with limited effect or on palliative care for dying cancer patients?
The all-too-common practice of administering new, marginally beneficial drugs to dying cancer patients is a losing proposition, for the patient, the health system and society at large.
Yes, every life is precious, some would say of infinite value.
But we have to stop deluding ourselves. People will die of cancer. Every reasonable effort should be made to ensure a good life and a good death.
But that does not mean mindlessly throwing huge sums of money at so-called miracle drugs.
Quality of life matters - for everyone.
Correspondance between Marie-Josée and André Picard (translated by myself since it was originally in french)
From André Picard
That is precisely the challenge: How to target treatments to maximise benefits to the individual and society.
It's another huge challenge created by cancer which as you said is already cruel and ungrateful.
-----Original Message-----
From: Marie-Josée Lafrance
Sent: 10 septembre 2009 23:59
To: Picard, Andre
Subject: Re: article cancer
Thank you! The question remains how do we know in advance if the patient will ahve marginal benefits or like my husband a very favorable response to therapy. Food for thought.
Picard, Andre wrote:
> Thank you for your comments but I beg to differ, the public needs to have those discussions and debate.
> It is remarkable that your husband benefited from Avastin (and other interventions) and that he is in remission. But a lot of patients do not benefit as much from these costly treatments. In those cases money would be better spent in palliative care.
> That is reality. We must be realistic, and not create false hope.
> Santé!
> André
> -----Original Message-----
> From: Marie-Josée Lafrance
> Sent: 10 septembre 2009 23:18
> To: Picard, Andre
> Subject: article cancer
> M. Picard
> I read your article on the astronomica costs of medications and became nauseous.
> My husband was diagnosed with colon cancer (inoperable) in July 2008. A 30 cm (12 in) tumour was reaching far up touching his liver stomach and kidneys in addition to his peritoneal wall. His life expectancy was a few months only
> Well, thanks to Avastin combined with other chemotherapy treatments, he is still alive 14 months after diagnosis and he bacame eligible for surgery in June 2009. He went through surgery combined with a state of the art technic called HIPEC, which is hot chemo directly into his abdomen. Cancer is 98% gone and he is in remission and doing pretty well today. He was able to see our daughter start in grade 1 in September.
> How can clinical studies show differences inlongevity with or without medication when age, cancer spread, type of cancer, personal predisposition, medical history are all factor that influence outcome
> My husband is 42 and still alive to see his children grow thanks to Avastin. Without this medication he would not be here anymore. Life does not have a price. ¨
>It is apparent to me, sir, that severe illness never touched you.
> Cancer is already cruel and ungrateful enough as it is. The public does not need articles like yours to take away their hope.
> Santé!!
> The Spouse of a cancer survivor
Sunday, September 6, 2009
3 months
September 3 marked the third month of convalescence. When I am not affected by the chemo (between day 7 and 13) I'm pretty good. I think I could be better but still not bad. I can not complain. In fact, there is one thing I complain about, my bowel function is really not optimal yet. I am told that it could take up to one year but deep down inside I hope that it will be quicker. I manage the situation still better than the first two months of convalescence.
My appointment with Dr. Y was delayed to September 29 . This will be almost 4 months since I last saw him. I look forward to hear what he has to say.
MJ commented that I was not writing as often on the blog ... Maybe a little. I really do not know what might interest you. In the last year I told you everything and now I am a little afraid of boring you. If you have specific questions to ask me, go ahead it will feed the blog.
Apart from that we continue to pray and make the every effort to keep cancer at bay.
Santé!
My appointment with Dr. Y was delayed to September 29 . This will be almost 4 months since I last saw him. I look forward to hear what he has to say.
MJ commented that I was not writing as often on the blog ... Maybe a little. I really do not know what might interest you. In the last year I told you everything and now I am a little afraid of boring you. If you have specific questions to ask me, go ahead it will feed the blog.
Apart from that we continue to pray and make the every effort to keep cancer at bay.
Santé!
Friday, August 28, 2009
Things are good
Just a quick note to say that I am beginning to see light at the end of the tunnel. Even if the situation (south of the navel) is not quite perfect, it is improving slowly. Chemo interferes a little in the restoration of optimal intestinal function but I know it's temporary. Speaking of chemo, I received my third treatment post-surgery. I will be disconnected in about an hour.
Dr. L had to hear me cry a little. I confessed that I sometimes fear the return of the cancer. He listened with empathy and comforted me on the fact that fear is normal and it was healthy to express it. Yes, there are those days where I am really scared. On these days I am even afraid to say that the cancer is gone in case it would hear and decides to return. This is silly.
That's the ups and downs of living with cancer. Even if I want to be strong there are days when it's harder. Don't worry though these moments never lasts long.
Dr. L told me when we talked about the surgery and my recovery and chemo treatments: you are strong. This is the first time he told me that. I was flattered. I know many of you tell me the same thing but for me it's like a pat on the back at work, you always want more.
I'm going to see Dr. Y in September. I look forward to that appointment. I look forward to when I can start doing real exercises. I look forward to his "thumbs up".
We went camping in August. A few days in a tent and the following week in an RV (Class C). The tent was hard. It was the week following chemo and it rained a lot. Two conditions that do not help enjoy the experience. The week in RV has been fantastic. A whole new camping experience. If you want to see the pictures you can click here http://www.facebook.com/album.php?aid=2027702&id=1057565304&l=3ad6134168 . This is MJ's facebook album for summer 2009 (158 photos).
Finally, I leave you by saying that Tristan started school. It is his second day today. Yesterday the bus dropped him home at 17:50. They had left school at 16:45. It seems that the traffic was terrible. We hoped that there will be adjustments to the route. Jordan and Elodie start Monday. Both are very excited.
Good day to all!
Dr. L had to hear me cry a little. I confessed that I sometimes fear the return of the cancer. He listened with empathy and comforted me on the fact that fear is normal and it was healthy to express it. Yes, there are those days where I am really scared. On these days I am even afraid to say that the cancer is gone in case it would hear and decides to return. This is silly.
That's the ups and downs of living with cancer. Even if I want to be strong there are days when it's harder. Don't worry though these moments never lasts long.
Dr. L told me when we talked about the surgery and my recovery and chemo treatments: you are strong. This is the first time he told me that. I was flattered. I know many of you tell me the same thing but for me it's like a pat on the back at work, you always want more.
I'm going to see Dr. Y in September. I look forward to that appointment. I look forward to when I can start doing real exercises. I look forward to his "thumbs up".
We went camping in August. A few days in a tent and the following week in an RV (Class C). The tent was hard. It was the week following chemo and it rained a lot. Two conditions that do not help enjoy the experience. The week in RV has been fantastic. A whole new camping experience. If you want to see the pictures you can click here http://www.facebook.com/album.php?aid=2027702&id=1057565304&l=3ad6134168 . This is MJ's facebook album for summer 2009 (158 photos).
Finally, I leave you by saying that Tristan started school. It is his second day today. Yesterday the bus dropped him home at 17:50. They had left school at 16:45. It seems that the traffic was terrible. We hoped that there will be adjustments to the route. Jordan and Elodie start Monday. Both are very excited.
Good day to all!
Friday, July 31, 2009
Who Am I?
Odd question, eh!
Let me explain my point. Since July 2008, I defined myself as as a man with stage 4 colon cancer stage 4. Even once in a conversation with the social worker, I made a freudian slip, I said I am a colon cancer. She replied by saying you have cancer, you are not a cancer. Of course that's what I meant but the slip made me think for a moment on how I perceived my illness.
So, I said that I saw myself for a year as a man with a diagnosis of colon cancer. Except that since June 3, there is no visible trace of cancer and my markers are in the normal range. Do I still define myself the same way. Instead, I want to see the positive side. I could define myself as a survivor. The survival period is not very long but still.
I talked to my mentor (Barry). He suggested that i say that I am NED, which he uses for himself. NED means No Evidence of Disease and in his case it's been about 7 years. Talking to Barry is always comforting, I think it's appropriate to say that I have been NED for 2 months. It's similar to Alcoholics Anonymous, they count the number of days of sobriety. Also there is something in the act of saying "no evidence of disease" which puts a smile on my face.
Some of you will say it's simple you're Martin Raymond. But you see this is not the same Martin as before the disease. Cancer changes you and like it or not it is part of me now (without evidence or present). So to define myself simply as Martin seems incomplete, not very precise. This is not a question of wanting to feel sorry or attract pity, I think it's just who I really am a cancer survivor NED since 2 months. Have you ever asked the question, Who are you? ... What is the answer? You are welcome to share your thoughts with me via email (more private) or via comments on the blog.
Santé!
Let me explain my point. Since July 2008, I defined myself as as a man with stage 4 colon cancer stage 4. Even once in a conversation with the social worker, I made a freudian slip, I said I am a colon cancer. She replied by saying you have cancer, you are not a cancer. Of course that's what I meant but the slip made me think for a moment on how I perceived my illness.
So, I said that I saw myself for a year as a man with a diagnosis of colon cancer. Except that since June 3, there is no visible trace of cancer and my markers are in the normal range. Do I still define myself the same way. Instead, I want to see the positive side. I could define myself as a survivor. The survival period is not very long but still.
I talked to my mentor (Barry). He suggested that i say that I am NED, which he uses for himself. NED means No Evidence of Disease and in his case it's been about 7 years. Talking to Barry is always comforting, I think it's appropriate to say that I have been NED for 2 months. It's similar to Alcoholics Anonymous, they count the number of days of sobriety. Also there is something in the act of saying "no evidence of disease" which puts a smile on my face.
Some of you will say it's simple you're Martin Raymond. But you see this is not the same Martin as before the disease. Cancer changes you and like it or not it is part of me now (without evidence or present). So to define myself simply as Martin seems incomplete, not very precise. This is not a question of wanting to feel sorry or attract pity, I think it's just who I really am a cancer survivor NED since 2 months. Have you ever asked the question, Who are you? ... What is the answer? You are welcome to share your thoughts with me via email (more private) or via comments on the blog.
Santé!
Friday, July 10, 2009
Follow-up appointment in surgery
Met Dr. S. today to follow up on the surgery. The surgeon found I was top shape considering the time elapsed. Her comment was "you had to be a great athlete before the operation to recover at this speed." ;-)
Great athlete I don't know but she was nice. She said that normally after 6 weeks they expect to see patients who walk slowly, sit up slowly, speaks slowly. She felt I stood very straight (posture) with a near normal walk and a normal speaking rate. To all my questions on weight loss, the amount of faeces per day etc.. she replied "normal".
According to her, there will be another month like this and then it should start to return to normal. I told her that I did not think I was in good shape. When I mentioned my walks at 3Km / h, she said that's fast. When I told her that I played golf on the WII (Woods 2010) and that I regretted it cause I spend the afternoon aching. She forbided me to play for another month. No muscular effort before another month (walking is good). Such an appointment helps to put things in perspective. It serves as a milestone. She boosted my morale for sure.
Santé!
Great athlete I don't know but she was nice. She said that normally after 6 weeks they expect to see patients who walk slowly, sit up slowly, speaks slowly. She felt I stood very straight (posture) with a near normal walk and a normal speaking rate. To all my questions on weight loss, the amount of faeces per day etc.. she replied "normal".
According to her, there will be another month like this and then it should start to return to normal. I told her that I did not think I was in good shape. When I mentioned my walks at 3Km / h, she said that's fast. When I told her that I played golf on the WII (Woods 2010) and that I regretted it cause I spend the afternoon aching. She forbided me to play for another month. No muscular effort before another month (walking is good). Such an appointment helps to put things in perspective. It serves as a milestone. She boosted my morale for sure.
Santé!
Tuesday, July 7, 2009
We'll get there!
Lately I think I just forget who I am and my core principles. In the last month I was waiting for my energy to come back to feel good. It's as if I told myself when I have the energy I will make plans, smile, get involved.
This morning I listened to a recording of Dr. Simonton provided by my wife's doctor. This recording reminded me that the healing process is opposite to the one I was living recently. That is to say that this is not the body that dictates the level of energy of your spirit, but the opposite. I temporarily forgot that what my thoughts defined how I feel. I had an awakening, a kind of "Ha Ha" moment. This is not instantaneous but I did set a new foundation for my healing, some new thoughts.
I have no excuses for this but I realize now that I dreaded my first appointment post surgery with my hematologist Dr. L. I realized that I had mixed emotions. I was happy to see him because he always gives me confidence but I did not want to disappoint him by admitting that I was not ready for a round of chemo. At the same time I was afraid he would tell me it had to be done now. But Dr. L is a great doctor. I did not feel any pressure. I felt great compassion and from the beginning I felt that we were a team.
He told me the level of my markers: 3. He said it was excellent the lowest level since the beginning. He was happy with the situation except that I lose a lot of weight. He suggested I meet with the nutritionist to establish a plan. I have an appointment next Monday. I will see DR L. in two weeks to reassess the possibility of starting chemotherapy.
A former classmate of MJ has a brother who was diagnosed with brain cancer. He is followed by the same hematologist than me (coincidence?). This classmate told him about me because she follows my situation through facebook and my blog. Her brother said that my story inspired him and gave him hope. As he is hospitalized, MJ and I went to visit him yesterday. Even though I was not a portrait of energy, I wanted to tell him in person not to quit and keep the faith.
Today he is going for brain surgery. I prayed for him all night without being able to stop it's as if we had a cosmic connection. My mind was constantly thinking about him and praying. At the point where I did not get to sleep. I made up for it this morning sleeping from 10am to noon. I tell you this story because yesterday's visit put things in perspective for me.
Thank you again for all your support on facebook on the blog or in my email.
Santé!
This morning I listened to a recording of Dr. Simonton provided by my wife's doctor. This recording reminded me that the healing process is opposite to the one I was living recently. That is to say that this is not the body that dictates the level of energy of your spirit, but the opposite. I temporarily forgot that what my thoughts defined how I feel. I had an awakening, a kind of "Ha Ha" moment. This is not instantaneous but I did set a new foundation for my healing, some new thoughts.
I have no excuses for this but I realize now that I dreaded my first appointment post surgery with my hematologist Dr. L. I realized that I had mixed emotions. I was happy to see him because he always gives me confidence but I did not want to disappoint him by admitting that I was not ready for a round of chemo. At the same time I was afraid he would tell me it had to be done now. But Dr. L is a great doctor. I did not feel any pressure. I felt great compassion and from the beginning I felt that we were a team.
He told me the level of my markers: 3. He said it was excellent the lowest level since the beginning. He was happy with the situation except that I lose a lot of weight. He suggested I meet with the nutritionist to establish a plan. I have an appointment next Monday. I will see DR L. in two weeks to reassess the possibility of starting chemotherapy.
A former classmate of MJ has a brother who was diagnosed with brain cancer. He is followed by the same hematologist than me (coincidence?). This classmate told him about me because she follows my situation through facebook and my blog. Her brother said that my story inspired him and gave him hope. As he is hospitalized, MJ and I went to visit him yesterday. Even though I was not a portrait of energy, I wanted to tell him in person not to quit and keep the faith.
Today he is going for brain surgery. I prayed for him all night without being able to stop it's as if we had a cosmic connection. My mind was constantly thinking about him and praying. At the point where I did not get to sleep. I made up for it this morning sleeping from 10am to noon. I tell you this story because yesterday's visit put things in perspective for me.
Thank you again for all your support on facebook on the blog or in my email.
Santé!
Saturday, July 4, 2009
Patience is a virtue
I thought I was a patient guy, I am not so sure these days. The days are redundant, the same TV shows, the toilet routine, the medication. Always looking for a position: sitting on the sofa, lying on the bed, sitting on the bed with my legs crossed, yoga position (the child) with cushions under the belly. When my mind feels combative I get on the treadmill, 10 minutes @ 3 km / h, then I lie down on the bed again.
Although I eat my three meals a day, the quantities are small so I am now at 153 lbs. The lowest weight since my teen years. The good thing about it is that I can rebuild my body and I am sure that I will never return to what I looked like before cancer. It's been a month of convalescence, I was told it would take about three. I believe another month I'll be back to my normal energy level. Time will tell me.
See Ya!
Although I eat my three meals a day, the quantities are small so I am now at 153 lbs. The lowest weight since my teen years. The good thing about it is that I can rebuild my body and I am sure that I will never return to what I looked like before cancer. It's been a month of convalescence, I was told it would take about three. I believe another month I'll be back to my normal energy level. Time will tell me.
See Ya!
Saturday, June 20, 2009
Back home
Since June 19 I'm back at home. I made a surprise appearance at the Relay for Life during the evening. Since then I rest a lot. The recovery will be lengthy, it is necessary process that I have to accept.
Thursday, June 4, 2009
Success
I take a moment to inform you of the good news. Wednesday morning 8:30, Martin found himself in the operating room for surgery, a long-awaited moment.
Doc Y, accompanied by a good medical team, was ready for a long and delicate intervention that lasted 11 hours. They removed the cancerous masses, rebuilt the duodenum, took out part of the stomach, removed 51 cm of small intestine and 50% of the colon and ended with the HIPEC intervention . The doc has accomplished its mission, 98% of the cancer was removed, a total success.
Martin was then transferred to the intensive care unit for observation. I welcomed him by saying "You've won my champion, you are now in intensive care and everything went according to YOUR predictions, He responded with a huge smile. He could not talk, was still intubated but I could read his thoughts "I told YOU!". Nurses taking care of him turned to me and said "WOW we have never seen an conscious intubated patient as calm as he is and on top of it smiling! What an extraordinary patient" and I replied "Yes, yes, you're right he is a man quite out of the ordinary " This morning, after a short stay of 12 hours in intensive care, he was transfered on the surgery-oncology ward. The battle is not yet won, a long rehabilitation begins but knowing him, he would tell you tonight "Don't worry, watch me, I'll get there in no time" Speedy recovery my love.
We look forward to your return.
Your wife
Doc Y, accompanied by a good medical team, was ready for a long and delicate intervention that lasted 11 hours. They removed the cancerous masses, rebuilt the duodenum, took out part of the stomach, removed 51 cm of small intestine and 50% of the colon and ended with the HIPEC intervention . The doc has accomplished its mission, 98% of the cancer was removed, a total success.
Martin was then transferred to the intensive care unit for observation. I welcomed him by saying "You've won my champion, you are now in intensive care and everything went according to YOUR predictions, He responded with a huge smile. He could not talk, was still intubated but I could read his thoughts "I told YOU!". Nurses taking care of him turned to me and said "WOW we have never seen an conscious intubated patient as calm as he is and on top of it smiling! What an extraordinary patient" and I replied "Yes, yes, you're right he is a man quite out of the ordinary " This morning, after a short stay of 12 hours in intensive care, he was transfered on the surgery-oncology ward. The battle is not yet won, a long rehabilitation begins but knowing him, he would tell you tonight "Don't worry, watch me, I'll get there in no time" Speedy recovery my love.
We look forward to your return.
Your wife
Monday, June 1, 2009
See You Later
This is my last post before surgery. Tomorrow, I'll get a call from the hospital telling me at what time and where to go. I am admitted the day before because of the preparation needed which includes a total "oil" drainage ;-)
I thank everyone who sent messages of support on Facebook, by email, phone, in person or on the blog. I am telling you, I feel all the energy you send me.
Today MJ and I went to the St-Joseph Oratory. We prayed, attended mass, prayed again and bought souvenirs (we bought angels pins, a book of prayers and medals of St-Joseph). We lit lanterns and I believe I got a sign from God. Marie-Josée and I climbed up a very narrow staircase to light 5 small lanterns, we were stopped in our descent by a small boy about 8 years old. He, also, wanted to lit a lantern as high as possible, to a point where he leaned on me to do so. After ligthing his lantern, which took some time, he joined his hands to pray. All this time I watched him because I could not get down. I lifted my head a moment and saw his mother signaling with her hand for him to get out of the way. I responded to his mother with my hand saying that I was not in a hurry, he could take his time. I was very calm. When we got at the bottom of the stairs I told MJ: "God sent me a message through this boy, he gives me his blessing and will let me live longer so I can look after my children, his children. I was filled with a holy certainty if you allow me the expression.
If you are up for it, I've found an example of my surgery in a video on the web. The link is: http://www.or-live.com/WFUBMC/1478/event/rnh.cfm . You need the RealPlayer plugin installed to view it. It's really interesting, you can see the installation of tubes to circulate the hot chemo. You can also see what the cancer cells in the abdomen look like.
Many people sent me messages of support and I appreciate it. Since I will be unconscious I don't believe that day will be so bad for me but for my wife... June 3 will be hell for her. She will not be under anesthesia and she will live every minute of this long day. In my unconscious state I will try to send positive and reassuring thoughts, but I doubt that this will be enough. Think of her on this day of her birthday. I will talk to you through MJ as soon as there is new development. She will write on the blog and also on her Facebook account. If you want to contact her write to mjlafrance@videotron.ca because her phone won't be on ;) in the hospital.
A bientôt!
I thank everyone who sent messages of support on Facebook, by email, phone, in person or on the blog. I am telling you, I feel all the energy you send me.
Today MJ and I went to the St-Joseph Oratory. We prayed, attended mass, prayed again and bought souvenirs (we bought angels pins, a book of prayers and medals of St-Joseph). We lit lanterns and I believe I got a sign from God. Marie-Josée and I climbed up a very narrow staircase to light 5 small lanterns, we were stopped in our descent by a small boy about 8 years old. He, also, wanted to lit a lantern as high as possible, to a point where he leaned on me to do so. After ligthing his lantern, which took some time, he joined his hands to pray. All this time I watched him because I could not get down. I lifted my head a moment and saw his mother signaling with her hand for him to get out of the way. I responded to his mother with my hand saying that I was not in a hurry, he could take his time. I was very calm. When we got at the bottom of the stairs I told MJ: "God sent me a message through this boy, he gives me his blessing and will let me live longer so I can look after my children, his children. I was filled with a holy certainty if you allow me the expression.
If you are up for it, I've found an example of my surgery in a video on the web. The link is: http://www.or-live.com/WFUBMC/1478/event/rnh.cfm . You need the RealPlayer plugin installed to view it. It's really interesting, you can see the installation of tubes to circulate the hot chemo. You can also see what the cancer cells in the abdomen look like.
Many people sent me messages of support and I appreciate it. Since I will be unconscious I don't believe that day will be so bad for me but for my wife... June 3 will be hell for her. She will not be under anesthesia and she will live every minute of this long day. In my unconscious state I will try to send positive and reassuring thoughts, but I doubt that this will be enough. Think of her on this day of her birthday. I will talk to you through MJ as soon as there is new development. She will write on the blog and also on her Facebook account. If you want to contact her write to mjlafrance@videotron.ca because her phone won't be on ;) in the hospital.
A bientôt!
Thursday, May 28, 2009
Vélothon Gaston-Pilon (Gaston-Pilon Bike-o-Thon)
Some of you are aware of this event but I wanted to advertise it even more since it’s coming soon.
Tristan (my oldest, 12 years old) in 2007 had the desire to organize a fundraising event. I had not been diagnosed at the time so it is not connected with my situation. It was just something natural for him, encouraged by the philosophy of the school that has an important community component. He talked to his two best friends who were immediately enthusiastic about the idea.
Then the date was chosen in June 2008. With the help of my brother Omer and the parents of his two friends we organized a bike ride from school to the house of my sister Lucie in St-Janvier. 80% of the ride was on the cycling path of “Le Petit Train du Nord”, 43 km with 15 cyclists including 4 adults. Thomas's mother and I followed as best as possible with our cars to ensure safety at intersections.
This project, conceived and developed by young people, has touched the entourage of Tristan, Thomas and Olivier. So they have managed to raise $ 1655 for La foundation de l’Hôpital Ste-Justine (French children’s hospital in Montreal). The choice of charity was probably influenced by the death of our friends’ son(he was 10 years old and lost his battle against leukemia in late 2007).
Given this success, the three buddies decided to do it again in 2009. The date is June 14. They obtained the support of the school and the parents' committee.
This year's ride will be 60 km as they will travel up to the St-Jerome train station to picnic and back.
I talk about this today of course because I want to invite you to attend the event. I know that several members of the cycling club Le Suroît read the blog and I hope you'll be tempted to come ride with Tristan and his friends. For information and registration visit the website http://www.velothongastonpilon.org/.
My second goal is to solicit your help. Normally I'm there to help the organization, but this time I'll be in the hospital recovering from my surgery. So if some of you are willing to lend a hand to Tristan it would be greatly appreciated. You can contact him by email at tristan.raymond@live.ca or call home at 450-434-4833.
I hope you understand that what I have done here is very difficult. Asking for help for oneself is one thing because you can communicate your needs, but do it for someone else is more complicated especially when it's your child. When it's your child, you always want to be the resource person. In this case I can not be that person. I could ask someone in particular but I do not want to impose this on anyone. I prefer that the help comes spontaneously and voluntarily.
Finally, if you can’t be present and you can’t help either, I encourage you to financially support the event. You can donate through the site of the bike-o-thon where there is a link to the foundation’s donations page. These electronic pledges are easy to do. Please indicate in the comment box that you made the donation for the Vélothon Gaston-Pilon. You can also donate by check or cash directly to Tristan. If you want to send a check to Tristan, send him an email he will reply to you with our address. Make checks on behalf of La Fondation de l'hôpital Ste-Justine.
Thank you for helping my son and his friends achieve their goal of $ 2000.
A proud Papa
Tristan (my oldest, 12 years old) in 2007 had the desire to organize a fundraising event. I had not been diagnosed at the time so it is not connected with my situation. It was just something natural for him, encouraged by the philosophy of the school that has an important community component. He talked to his two best friends who were immediately enthusiastic about the idea.
Then the date was chosen in June 2008. With the help of my brother Omer and the parents of his two friends we organized a bike ride from school to the house of my sister Lucie in St-Janvier. 80% of the ride was on the cycling path of “Le Petit Train du Nord”, 43 km with 15 cyclists including 4 adults. Thomas's mother and I followed as best as possible with our cars to ensure safety at intersections.
This project, conceived and developed by young people, has touched the entourage of Tristan, Thomas and Olivier. So they have managed to raise $ 1655 for La foundation de l’Hôpital Ste-Justine (French children’s hospital in Montreal). The choice of charity was probably influenced by the death of our friends’ son(he was 10 years old and lost his battle against leukemia in late 2007).
Given this success, the three buddies decided to do it again in 2009. The date is June 14. They obtained the support of the school and the parents' committee.
This year's ride will be 60 km as they will travel up to the St-Jerome train station to picnic and back.
I talk about this today of course because I want to invite you to attend the event. I know that several members of the cycling club Le Suroît read the blog and I hope you'll be tempted to come ride with Tristan and his friends. For information and registration visit the website http://www.velothongastonpilon.org/.
My second goal is to solicit your help. Normally I'm there to help the organization, but this time I'll be in the hospital recovering from my surgery. So if some of you are willing to lend a hand to Tristan it would be greatly appreciated. You can contact him by email at tristan.raymond@live.ca or call home at 450-434-4833.
I hope you understand that what I have done here is very difficult. Asking for help for oneself is one thing because you can communicate your needs, but do it for someone else is more complicated especially when it's your child. When it's your child, you always want to be the resource person. In this case I can not be that person. I could ask someone in particular but I do not want to impose this on anyone. I prefer that the help comes spontaneously and voluntarily.
Finally, if you can’t be present and you can’t help either, I encourage you to financially support the event. You can donate through the site of the bike-o-thon where there is a link to the foundation’s donations page. These electronic pledges are easy to do. Please indicate in the comment box that you made the donation for the Vélothon Gaston-Pilon. You can also donate by check or cash directly to Tristan. If you want to send a check to Tristan, send him an email he will reply to you with our address. Make checks on behalf of La Fondation de l'hôpital Ste-Justine.
Thank you for helping my son and his friends achieve their goal of $ 2000.
A proud Papa
Wednesday, May 27, 2009
Ottawa Race Weekend is Over
It was a beautiful weekend. Marie-Josée had a brilliant idea to get all of us to participate in the family 2 km run. The whole family was very excited at the finish line.
Well ... Élodie was somewhat in pain because we wanted to finish as a family, hand in hand, and Tristan accidentally tripped her. She fell on her knee. Her mother had her by the hand so she was lifted up pretty quickly. I would say she floated in the air for a moment before putting her feet back on the ground.
The family made the 2 km in 13:57. This puts Élodie 39th of 371 in her category (- 8 years old but she is 5). The boys could have run much faster but the goal was to finish together so they slowed for me.
It was the first race for Tristan and the third for Jordan. "They got the bite". Both now have the objective of running the 5 km run next year.
In my case, I liked the friendly atmosphere but at the same time the competitive side. Running by yourself is one thing but to run beside someone motivated me to keep going;-)
If you want to see full details of our results visit Sportstats. Search by the person's name and you'll have the results of all their official races.
The next day, Mom ran the half marathon. She did it in 2:21:01. It is 15 minutes less than her winter half marathon in Montreal. Good job my love! We were a great gang, Yves' family, Christine's family, MJ's aunt and uncle and Michelle's in-laws. In all 25 people either ran or cheered. All these people in a sea of 36,000 runners and 50,000 supporters.
Yes, you must be patient when you move around in Ottawa during that weekend but it's worth it especially since the weather was fantastic.
For photos, see the Josée's Facebook album at http://www.facebook.com/album.php?aid=2022586&id=1057565304&l=1c0200e2c1.
Well ... Élodie was somewhat in pain because we wanted to finish as a family, hand in hand, and Tristan accidentally tripped her. She fell on her knee. Her mother had her by the hand so she was lifted up pretty quickly. I would say she floated in the air for a moment before putting her feet back on the ground.
The family made the 2 km in 13:57. This puts Élodie 39th of 371 in her category (- 8 years old but she is 5). The boys could have run much faster but the goal was to finish together so they slowed for me.
It was the first race for Tristan and the third for Jordan. "They got the bite". Both now have the objective of running the 5 km run next year.
In my case, I liked the friendly atmosphere but at the same time the competitive side. Running by yourself is one thing but to run beside someone motivated me to keep going;-)
If you want to see full details of our results visit Sportstats. Search by the person's name and you'll have the results of all their official races.
The next day, Mom ran the half marathon. She did it in 2:21:01. It is 15 minutes less than her winter half marathon in Montreal. Good job my love! We were a great gang, Yves' family, Christine's family, MJ's aunt and uncle and Michelle's in-laws. In all 25 people either ran or cheered. All these people in a sea of 36,000 runners and 50,000 supporters.
Yes, you must be patient when you move around in Ottawa during that weekend but it's worth it especially since the weather was fantastic.
For photos, see the Josée's Facebook album at http://www.facebook.com/album.php?aid=2022586&id=1057565304&l=1c0200e2c1.
Saturday, May 23, 2009
Ottawa
We are leavingg for Ottawa in a little while (it is 3:00 in the morning) for the race weekend. Saturday 16:00 the five family members are running the family 2 km. Élodie (5 years old) did it in 14:29 min during training. And it's because she has to slow down to wait for her oldman.
Sunday, Marie-Josée is doing the half-marathon. There will be a big group: Yves my brother, his wife Danielle, their children Michelle, Christine, Julie and Stéphane (I can not remember if Patrick is running).
Those who wonder why I'm not sleeping at 3 o'clock, my brain is doing overtime. This is my third night like this. Is this due to withdrawal from my Hydromorph Contin? Yet I gradually decreased my dosage using my Dilaudid. Is this due to surgery anxiety ? Consciously I say no, but unconsciously? Anyway tonight I could not get out of my head the last song that we downloaded, Thks Fr Th Memrs from Fall Out Boy. That endless loop of the chorus in my head, it's stupefying. I have to try to sleep 3-4 hours ...
Good night!
Sunday, Marie-Josée is doing the half-marathon. There will be a big group: Yves my brother, his wife Danielle, their children Michelle, Christine, Julie and Stéphane (I can not remember if Patrick is running).
Those who wonder why I'm not sleeping at 3 o'clock, my brain is doing overtime. This is my third night like this. Is this due to withdrawal from my Hydromorph Contin? Yet I gradually decreased my dosage using my Dilaudid. Is this due to surgery anxiety ? Consciously I say no, but unconsciously? Anyway tonight I could not get out of my head the last song that we downloaded, Thks Fr Th Memrs from Fall Out Boy. That endless loop of the chorus in my head, it's stupefying. I have to try to sleep 3-4 hours ...
Good night!
Friday, May 22, 2009
John Fogarty Tour
Yesterday I was at John Fogarty's show at the Bell Center. For those who don't know him, he is the principal member of CCR, Creedence Clearwater Revival. Extremely popular band of the 70's. Their hits include: I heard it through the grapevine, Susie Q, Proud Mary, Up Around the Bend and others.
Thanks to my friend David I saw a show, for the first time in my life, in row A, the very first row. Yes Yes I spent two hours standing and leaning on the security fence to see John Fogarty within 3 meters.
He changed his guitar every song, he had at least 5 different ones. As a guitarist, he is completely different from Eric Clapton, but he is equally fascinating.
His drummer was excellent. Unfortunately I have not heard his name, Kevin something. If any of you play Rock Band on xbox 360 he looks like the bald drummer. He has biceps of a bodybuilder and wears big rock sunglasses with a white T-shirt. The sound of his bass drum has probably disintegrated my remaining tumors since my body vibrated so much with each beat.
There were two guitarists, a bassist (David Santos), and two musicians who played guitar, fiddle, mandolin, keyboard and conga.
What a show. I can tell you I got goosebumps a few times.
Speaking of show, my cousin Genevieve is organizing a fundraiser event to benefit Relay for Life of the Canadian Cancer Society. My situation was her motivation. It will take place at the Bourbon in the west-island on Sunday, June 7. There will be several local groups to discover and of course Genevieve will sing some songs. I urge everyone who can go to enjoy a great show for a good cause. If you want info contact Geneviève de Léry through email (gendelery@hotmail.com) or on facebook. By the way for those of you who were at my birthday in October, Geneviève had sung.
Thanks to my friend David I saw a show, for the first time in my life, in row A, the very first row. Yes Yes I spent two hours standing and leaning on the security fence to see John Fogarty within 3 meters.
He changed his guitar every song, he had at least 5 different ones. As a guitarist, he is completely different from Eric Clapton, but he is equally fascinating.
His drummer was excellent. Unfortunately I have not heard his name, Kevin something. If any of you play Rock Band on xbox 360 he looks like the bald drummer. He has biceps of a bodybuilder and wears big rock sunglasses with a white T-shirt. The sound of his bass drum has probably disintegrated my remaining tumors since my body vibrated so much with each beat.
There were two guitarists, a bassist (David Santos), and two musicians who played guitar, fiddle, mandolin, keyboard and conga.
What a show. I can tell you I got goosebumps a few times.
Speaking of show, my cousin Genevieve is organizing a fundraiser event to benefit Relay for Life of the Canadian Cancer Society. My situation was her motivation. It will take place at the Bourbon in the west-island on Sunday, June 7. There will be several local groups to discover and of course Genevieve will sing some songs. I urge everyone who can go to enjoy a great show for a good cause. If you want info contact Geneviève de Léry through email (gendelery@hotmail.com) or on facebook. By the way for those of you who were at my birthday in October, Geneviève had sung.
Saturday, May 16, 2009
HIPEC
I found this information on the Internet for a portion of the operation that I might have. This is the part that brought me to Dr. Y because he is one of three or four surgeons who are trained to do it. In addition I am told he is the best.
HIPEC means Hyperthermic Intra Peritoneal Chemotherapy.
Note: Peritoneal refers to the membrane that wraps abdominal organs.
Before connecting the HIPEC, the surgeon must remove all visible cancer. It must be understood here that surgeons do not cut into a tumor, they take a margin all around the tumour of healthy cells. This, (having an acceptable margin), can lead to difficulties and that is why Dr. Y does not give me any guaranties. Once all visible cancer is removed (in my case probably colon, duodenum, part of the stomach, part of the mesentery and perhaps more) the doctor installs tubes and the abdomen closed temporarily to perform HIPEC ( read the description of HIPEC below). HIPEC is therefore expected to kill all traces of cancer that can not be seen with the naked eye and even perhaps some that can be seen but are not possible to cut(no margin).
Then he opens the abdomen, removes the tubes and proceeds to clean the cavity and finally close it permanently. Note that if the rectum is affected by cancer and there is not enough room to connect the small intestin then there will be ileostomy (an opening in the abdominal wall for elimination of feces in a bag).
How HIPEC Works
Below is an animation of the HIPEC procedure.
During the HIPEC procedure, the surgeon will continuously circulate a heated sterile solution containing a chemotherapeutic agent throughout the peritoneal cavity, for a maximum of two hours. The HIPEC procedure is designed to attempt to kill any remaining cancer cells.
Giving the chemotherapy in the abdomen at the time of surgery allows for greater concentrations of the drug where it is needed. Adding heat has a threefold advantage:
Heat at 42 degrees Celsius kills cancer cells while not affecting normal cells.
Heat makes the killing effect of the chemotherapy more powerful.
Heat softens the tumor nodules so the penetration of the chemotherapy into the tumor is enhanced.
The procedure also improves drug absorption and effect with minimal exposure to the rest of the body. In this way, the normal side effects of chemotherapy can be avoided.
HIPEC means Hyperthermic Intra Peritoneal Chemotherapy.
Note: Peritoneal refers to the membrane that wraps abdominal organs.
Before connecting the HIPEC, the surgeon must remove all visible cancer. It must be understood here that surgeons do not cut into a tumor, they take a margin all around the tumour of healthy cells. This, (having an acceptable margin), can lead to difficulties and that is why Dr. Y does not give me any guaranties. Once all visible cancer is removed (in my case probably colon, duodenum, part of the stomach, part of the mesentery and perhaps more) the doctor installs tubes and the abdomen closed temporarily to perform HIPEC ( read the description of HIPEC below). HIPEC is therefore expected to kill all traces of cancer that can not be seen with the naked eye and even perhaps some that can be seen but are not possible to cut(no margin).
Then he opens the abdomen, removes the tubes and proceeds to clean the cavity and finally close it permanently. Note that if the rectum is affected by cancer and there is not enough room to connect the small intestin then there will be ileostomy (an opening in the abdominal wall for elimination of feces in a bag).
How HIPEC Works
Below is an animation of the HIPEC procedure.
During the HIPEC procedure, the surgeon will continuously circulate a heated sterile solution containing a chemotherapeutic agent throughout the peritoneal cavity, for a maximum of two hours. The HIPEC procedure is designed to attempt to kill any remaining cancer cells.
Giving the chemotherapy in the abdomen at the time of surgery allows for greater concentrations of the drug where it is needed. Adding heat has a threefold advantage:
Heat at 42 degrees Celsius kills cancer cells while not affecting normal cells.
Heat makes the killing effect of the chemotherapy more powerful.
Heat softens the tumor nodules so the penetration of the chemotherapy into the tumor is enhanced.
The procedure also improves drug absorption and effect with minimal exposure to the rest of the body. In this way, the normal side effects of chemotherapy can be avoided.
Wednesday, May 13, 2009
Elodie wheels around
Last weekend, Saturday, Elodie started biking without the safety wheels. I was very proud of her. I do not know if it is because she's a girl but it was the first child who expressed her feelings.
When I asked her why she stopped pedaling she answered: "I'm stressed out." She was afraid of falling. It was cute her way to tell me ... I am stressed.
And when she felt she was on the brink of success she said: "I feel good today, and when we feel good we can do great things." She wanted to tell me,I feel I will be able to do this. And she succeeded on the next try.
If you are in the neighbourhood, stop by, Élodie will show you how she has taken all steps to successfully ride her two-wheel bicycle.
Tuesday, May 12, 2009
The Faculty
On May 6, MJ and I were invited to participate in a continuing education seminar at the Faculty of Nursing of the University of Montreal. The subject is “soins aux familles” which I have a hard time translating. It would be something like how to provide support and care for the family members of a chronically or seriously ill patient.
This week long training provided to nurses included a live interview of a family touched by serious illness (usually cancer). The head of the training, Ms. D, knows a nurse at the hospital Sacré-Coeur. She is MJ’s angel which introduced us to my hematologist Dr. L. Ms. D was looking for a family for the week of training and our names was proposed.
We did not bring the children but we had a picture of them and they were a major part of the discussion.
18 nurses were enrolled in this session and watched on closed circuit television, or through a window, the interview conducted by the head of training. One objective was to show participants a method of approaching the family to get to know them better(not just the patient) and provide more appropriate care hence better care.
Note: Ms. D, if you read my blog and you want to correct me, please contact me anytime.
The main interview lasted almost 2 hours. We responded to questions, expressed emotions, cried a lot. We talked about the disease but not in detail, rather as a backdrop for the rest. Then the participants gave feedback to Ms. D. What did they retain? What had touched them? What would they do different when they return to work?
During the debriefing it was our turn to be the observer behind the window.
Finally we had the last word by having the opportunity to comment after their debriefing.
The basis of the method of interview is a tool Ms. D calls a genogram. It is a kind of drawing resembling a family tree. Ms. D said that it helps to see the patient in a broader context. He is not the only one affected by the disease. All the people who gravitate around him are affected too in one way or another and they in turn have an impact on the patient's response to the disease.
Without giving too much detail on the genogram it is important to know that this tool opened the door wide to emotions. This is a simple way to get the person in front of you to share some very deep thoughts.
Those who know me well know that I don’t need to have the door wide open to start talking and I wonder if on a few occasions Ms. D did not ask herself the question: "how can I stop him and return to my questions." But, but, but I still managed to stop at one point so MJ could also share her point of view ;-)
Moreover, this directed discussion period has allowed Josée and I to discover a little more about each other. Even though we’ve been together 25 years, our perspective of the other on some issues has changed ... or evolved.
In summary we have discussed the following topics:
· Relationship with our respective parents (also with my brothers and sisters)
· Relationships with our children
· How did we get the news of the disease
· How have we communicated the news to the children
· What each of us bring to the other
· How each of us live or respond to the disease
· Identify the strength of the other to defeat the disease (not just the patient)
· Identify the strengths of children to pass through this test
Out of everything that was said that morning, I asked each of the participants to retain at least this: If you can not find a way to give hope to your patients at least have the wisdom not to remove the hope they have, because hope is the basis of any treatment. Hope does not cure everything, but you can’t heal without hope.
Josée's message was: as much as possible focus on the person in front of you, make him/her feel important, be it the patient or a member of the family.
MJ and I were delighted with this half-day. I believe that all participants were also appreciative. Many were waiting for us outside the room to thank us for our candor. I can tell you that it's always nice to be told that you’re good and nice ;-)
One comment that touched us most deeply: "we would all want to be adopted by you guys." For a couple with a main objective to be the best parents possible, these are words that go straight to the heart.
Marie-Josée and I thank Ms. D to have invited us and we thank all nurses for their warmth and their comments. We wish them good luck in the continuation of their work that requires great compassion for their fellowman.
This week long training provided to nurses included a live interview of a family touched by serious illness (usually cancer). The head of the training, Ms. D, knows a nurse at the hospital Sacré-Coeur. She is MJ’s angel which introduced us to my hematologist Dr. L. Ms. D was looking for a family for the week of training and our names was proposed.
We did not bring the children but we had a picture of them and they were a major part of the discussion.
18 nurses were enrolled in this session and watched on closed circuit television, or through a window, the interview conducted by the head of training. One objective was to show participants a method of approaching the family to get to know them better(not just the patient) and provide more appropriate care hence better care.
Note: Ms. D, if you read my blog and you want to correct me, please contact me anytime.
The main interview lasted almost 2 hours. We responded to questions, expressed emotions, cried a lot. We talked about the disease but not in detail, rather as a backdrop for the rest. Then the participants gave feedback to Ms. D. What did they retain? What had touched them? What would they do different when they return to work?
During the debriefing it was our turn to be the observer behind the window.
Finally we had the last word by having the opportunity to comment after their debriefing.
The basis of the method of interview is a tool Ms. D calls a genogram. It is a kind of drawing resembling a family tree. Ms. D said that it helps to see the patient in a broader context. He is not the only one affected by the disease. All the people who gravitate around him are affected too in one way or another and they in turn have an impact on the patient's response to the disease.
Without giving too much detail on the genogram it is important to know that this tool opened the door wide to emotions. This is a simple way to get the person in front of you to share some very deep thoughts.
Those who know me well know that I don’t need to have the door wide open to start talking and I wonder if on a few occasions Ms. D did not ask herself the question: "how can I stop him and return to my questions." But, but, but I still managed to stop at one point so MJ could also share her point of view ;-)
Moreover, this directed discussion period has allowed Josée and I to discover a little more about each other. Even though we’ve been together 25 years, our perspective of the other on some issues has changed ... or evolved.
In summary we have discussed the following topics:
· Relationship with our respective parents (also with my brothers and sisters)
· Relationships with our children
· How did we get the news of the disease
· How have we communicated the news to the children
· What each of us bring to the other
· How each of us live or respond to the disease
· Identify the strength of the other to defeat the disease (not just the patient)
· Identify the strengths of children to pass through this test
Out of everything that was said that morning, I asked each of the participants to retain at least this: If you can not find a way to give hope to your patients at least have the wisdom not to remove the hope they have, because hope is the basis of any treatment. Hope does not cure everything, but you can’t heal without hope.
Josée's message was: as much as possible focus on the person in front of you, make him/her feel important, be it the patient or a member of the family.
MJ and I were delighted with this half-day. I believe that all participants were also appreciative. Many were waiting for us outside the room to thank us for our candor. I can tell you that it's always nice to be told that you’re good and nice ;-)
One comment that touched us most deeply: "we would all want to be adopted by you guys." For a couple with a main objective to be the best parents possible, these are words that go straight to the heart.
Marie-Josée and I thank Ms. D to have invited us and we thank all nurses for their warmth and their comments. We wish them good luck in the continuation of their work that requires great compassion for their fellowman.
Saturday, May 2, 2009
Port-O-Cath
As you know this week I had a new distribution system for chemo installed. Instead of a PICC line I now have a Port-O-Cath.
Not many images are available on the Internet but I found one that is OK.
As you can see it is a plastic box (mine is white) with a membrane and a central tube.
It's in the membrane that we insert the needle that brings the liquid flowing in the tube then to my right jugular vein. All this was inserted under my skin so when healing is complete I will not have to worry about a bandage or an opening in the skin (open door to infections). The needle going through the skin to distribute the chemo is like this.
The nurse takes the white part between the fingers of one hand. With the other hand she feels the skin to locate the valve and maintains it in position while the right hand pierces the skin. The attached tube stays outside on the chest so they can plug in pouches of chemotherapy or other treatments. My scars are still fresh but it should be less apparent with time. The Yellow or blue is a bruise, it will disappear eventually ;-)
The operation is done with local anesthesia. I am laying on my back with the head turned to the left. Nurses install surgical blankets leaving only the part where surgery will take place (neck, part of right shoulder and chest). Injections of anesthetic is what hurts most then you feel fingers pushing and pulling and lifting your skin but it don't feel pain. There are two incisions because they have to install the tube in the jugular (upper incision) and then adjust the length at the other end where they have inserted the valve (other incision). By the way the tube connection on the valve is similar to the fittings on a engine's carburetor.
When everything was installed I had to stay 3 hours on the back under observation. She was watching for bleeding but also the connection that I mentioned is quite fragile so I could not use strength from the right side (not lift my head, not lift my arm etc..) in case the tube wold dislodge and start floating in the jugular.
Anecdote: Toward the end of the operation, the doctor said: YIKES!. So I said, this is not the kind of sound a patient wants to hear from the doctor operating on him (do not forget that I do not see anything because the blanket covers my face). He hesitated and said, no no everything is fine is just the thread that came out of the needle. A little later he sighed and immediately said that this was perhaps not a good thing to do under the circumstances because I could interpret it negatively. We all laughed.
Not many images are available on the Internet but I found one that is OK.
As you can see it is a plastic box (mine is white) with a membrane and a central tube.
It's in the membrane that we insert the needle that brings the liquid flowing in the tube then to my right jugular vein. All this was inserted under my skin so when healing is complete I will not have to worry about a bandage or an opening in the skin (open door to infections). The needle going through the skin to distribute the chemo is like this.
The nurse takes the white part between the fingers of one hand. With the other hand she feels the skin to locate the valve and maintains it in position while the right hand pierces the skin. The attached tube stays outside on the chest so they can plug in pouches of chemotherapy or other treatments. My scars are still fresh but it should be less apparent with time. The Yellow or blue is a bruise, it will disappear eventually ;-)
The operation is done with local anesthesia. I am laying on my back with the head turned to the left. Nurses install surgical blankets leaving only the part where surgery will take place (neck, part of right shoulder and chest). Injections of anesthetic is what hurts most then you feel fingers pushing and pulling and lifting your skin but it don't feel pain. There are two incisions because they have to install the tube in the jugular (upper incision) and then adjust the length at the other end where they have inserted the valve (other incision). By the way the tube connection on the valve is similar to the fittings on a engine's carburetor.
When everything was installed I had to stay 3 hours on the back under observation. She was watching for bleeding but also the connection that I mentioned is quite fragile so I could not use strength from the right side (not lift my head, not lift my arm etc..) in case the tube wold dislodge and start floating in the jugular.
Anecdote: Toward the end of the operation, the doctor said: YIKES!. So I said, this is not the kind of sound a patient wants to hear from the doctor operating on him (do not forget that I do not see anything because the blanket covers my face). He hesitated and said, no no everything is fine is just the thread that came out of the needle. A little later he sighed and immediately said that this was perhaps not a good thing to do under the circumstances because I could interpret it negatively. We all laughed.
Discovery
I wanted to share a discovery on the web with you. It is an online database for books. I am in the process of entering our own collection. You can view it in the left column. I find it fascinating because we have a large collection of books (habit taken from my parents) and I like the fact that you can easily identify them with this online tool. By the way if you're interested in any of our books send me an email I will gladly lend it to you. The site is called Library Thing. It is available in several languages.
Thursday, April 23, 2009
YES YES YES
Anyone who has attended a Tony Robbins conference understands the reference in my title. The reference is also used to its simplest expression, as a statement of acceptance. Dr Y agreed to opening up my belly and explore the possibilities.
Note that I did not say he will operate because he was very careful to tell me he does not know if he can operate. Clearly he needs to see for himself, with his eyes, the extent of cancer spread and the impact in my abdomen before he can decide if he can resect anything.
The various images (PET scan and others) do not give enough details to confirm the actions to be taken though they are specific enough to say that my liver is not affected. So it seems he will not have to touch it.
This is great news since the partial liver resection is a challenge and furthermore this support the thesis that my cancer has not spread through blood, but probably by contact (until now). If you remember this was one of the strikes against me in relation to the success of the operation so it's one less now.
The surgery will take place either May 25 or June 3. I hope it will be June 3 because it is MJ's birthday. I believe it would bring me good luck. Moreover, June 3rd 2009 marks the 25th anniversary of our relationship. We dated for the first time on that day in 1984. Christine and Marco will surely remember.
As you can imagine I am very happy (Marie-Josée also). Things are going as I had imagined even in the slightest details. I visualize every day and I saw the operation in late May early June... Huh! Huh!
Here is how I see what's coming.
I see myself sitting in my hospital bed with a big smile listening to the doctor telling me that things were not as bad as expected, he was able to remove all apparent traces of cancer and that I will recover quickly from the surgery. The recovery is not easy, but I see myself going through it with a smile surrounded by those I love.
My visualization continues a little more down the road. Once I returned I finally put the finishing touches to really start the company and also I am helping my friend Barry at the Colorectal Cancer Association of Canada. I even have a vision of me in 20 years surrounded by my wife and children.
Thank you to everyone for the support and encouragement.
Don't stop praying, sending positive thoughts, etc..
Ciao!
Note that I did not say he will operate because he was very careful to tell me he does not know if he can operate. Clearly he needs to see for himself, with his eyes, the extent of cancer spread and the impact in my abdomen before he can decide if he can resect anything.
The various images (PET scan and others) do not give enough details to confirm the actions to be taken though they are specific enough to say that my liver is not affected. So it seems he will not have to touch it.
This is great news since the partial liver resection is a challenge and furthermore this support the thesis that my cancer has not spread through blood, but probably by contact (until now). If you remember this was one of the strikes against me in relation to the success of the operation so it's one less now.
The surgery will take place either May 25 or June 3. I hope it will be June 3 because it is MJ's birthday. I believe it would bring me good luck. Moreover, June 3rd 2009 marks the 25th anniversary of our relationship. We dated for the first time on that day in 1984. Christine and Marco will surely remember.
As you can imagine I am very happy (Marie-Josée also). Things are going as I had imagined even in the slightest details. I visualize every day and I saw the operation in late May early June... Huh! Huh!
Here is how I see what's coming.
I see myself sitting in my hospital bed with a big smile listening to the doctor telling me that things were not as bad as expected, he was able to remove all apparent traces of cancer and that I will recover quickly from the surgery. The recovery is not easy, but I see myself going through it with a smile surrounded by those I love.
My visualization continues a little more down the road. Once I returned I finally put the finishing touches to really start the company and also I am helping my friend Barry at the Colorectal Cancer Association of Canada. I even have a vision of me in 20 years surrounded by my wife and children.
Thank you to everyone for the support and encouragement.
Don't stop praying, sending positive thoughts, etc..
Ciao!
Tuesday, April 21, 2009
We're Back
Back to everyday life.
It is certainly a contrast to our two weeks in Dubai. The trip was fantastic.
Many of you have followed our activities through the photos. We celebrated the 12th anniversary of Tristan in a restaurant specializing in fish, The Seafood Market at the Meridien hotel. A memorable evening marked by the new tastings like shark.
Most of the things we see in Dubai are exceptional. It's big, it's expensive, it is clean, everything is new, but in unreal proportions.
In any case I can say I have re-energized. To a point where I wonder if there is cancer. I feel better than in the past 5 years. This is a good sign. I meet Dr Y. Thursday and I'll be set for the operation. I can not wait because I'm ready mentally. Inregards to the household organization, we will finalize the plans when we have more details.
Good day to all!
It is certainly a contrast to our two weeks in Dubai. The trip was fantastic.
Many of you have followed our activities through the photos. We celebrated the 12th anniversary of Tristan in a restaurant specializing in fish, The Seafood Market at the Meridien hotel. A memorable evening marked by the new tastings like shark.
Most of the things we see in Dubai are exceptional. It's big, it's expensive, it is clean, everything is new, but in unreal proportions.
In any case I can say I have re-energized. To a point where I wonder if there is cancer. I feel better than in the past 5 years. This is a good sign. I meet Dr Y. Thursday and I'll be set for the operation. I can not wait because I'm ready mentally. Inregards to the household organization, we will finalize the plans when we have more details.
Good day to all!
Sunday, April 12, 2009
Dubai
News: It seems that even if youre not on Facebook you are able to see the photos publlihed there. So here are the links but tell me if it does not work
http://www.facebook.com/album.php?aid=2019344&id=1057565304&l=0693fd993c
and this one
http://www.facebook.com/album.php?aid=2019655&id=1057565304&l=6505ec4400
Here are pictures of our trip to Dubai for those not on facebook. http://picasaweb.google.ca/martinraymond.qc/Dubai?feat=directlink
http://www.facebook.com/album.php?aid=2019344&id=1057565304&l=0693fd993c
and this one
http://www.facebook.com/album.php?aid=2019655&id=1057565304&l=6505ec4400
Here are pictures of our trip to Dubai for those not on facebook. http://picasaweb.google.ca/martinraymond.qc/Dubai?feat=directlink
Saturday, March 28, 2009
Varia
A little note to let you know that things are going well.
The trip preparations are going well. MJ is taking care of everything.
The Pet scan is done and the other scan as well. I also received a letter telling me that Dr Y as ask to put me on the surgery waiting list. This does not confirm that he will operate but it gives me real hope that he will. Why would he go through the trouble if he did think lean towards a yes. If he really did not want to do it he would not bother filling out the paperwork. I stay grounded though, he can always say no but the script I have in mind is more on the positive side.
Wednesday I had my bottle unplugged and at the same time they took out the Piccline. I was told to keep the bandage for 2 days but I kept it for 3. I was a bit scared to see the hole not completely healed. By the way, the tube they took out was 45 cm long (about 14 inches).
I will post some pictures from Dubai as soon as I can.
The trip preparations are going well. MJ is taking care of everything.
The Pet scan is done and the other scan as well. I also received a letter telling me that Dr Y as ask to put me on the surgery waiting list. This does not confirm that he will operate but it gives me real hope that he will. Why would he go through the trouble if he did think lean towards a yes. If he really did not want to do it he would not bother filling out the paperwork. I stay grounded though, he can always say no but the script I have in mind is more on the positive side.
Wednesday I had my bottle unplugged and at the same time they took out the Piccline. I was told to keep the bandage for 2 days but I kept it for 3. I was a bit scared to see the hole not completely healed. By the way, the tube they took out was 45 cm long (about 14 inches).
I will post some pictures from Dubai as soon as I can.
Saturday, March 21, 2009
PET scan
Positron Emission Tomography – Computed Tomography (PET/CT)
What is Positron Emission Tomography – Computed Tomography (PET/CT) Scanning?
Sample image obtained using a combination of PET and CT imaging technology.
Positron emission tomography, also called PET imaging or a PET scan, is a type of nuclear medicine imaging.
Nuclear medicine is a branch of medical imaging that uses small amounts of radioactive material to diagnose or treat a variety of diseases, including many types of cancers, heart disease and certain other abnormalities within the body.
Nuclear medicine or radionuclide imaging procedures are noninvasive and usually painless medical tests that help physicians diagnose medical conditions. These imaging scans use radioactive materials called radiopharmaceuticals or radiotracers.
Depending on the type of nuclear medicine exam you are undergoing, the radiotracer is either injected into a vein, swallowed or inhaled as a gas and eventually accumulates in the organ or area of your body being examined, where it gives off energy in the form of gamma rays. This energy is detected by a device called a gamma camera, a (positron emission tomography) PET scanner and/or probe. These devices work together with a computer to measure the amount of radiotracer absorbed by your body and to produce special pictures offering details on both the structure and function of organs and tissues.
A PET scan measures important body functions, such as blood flow, oxygen use, and sugar (glucose) metabolism, to help doctors evaluate how well organs and tissues are functioning.
What are some common uses of the procedure?
PET and PET/CT scans are performed to:
- detect cancer
- determine whether a cancer has spread in the body
- assess the effectiveness of a treatment plan, such as cancer therapy
- determine if a cancer has returned after treatment
- determine blood flow to the heart muscle
- determine the effects of a heart attack, or myocardial infarction, on areas of the heart
- identify areas of the heart muscle that would benefit from a procedure such as angioplasty or coronary artery bypass surgery (in combination with a myocardial perfusion scan).
- evaluate brain abnormalities, such as tumors, memory disorders and seizures and other central nervous system disorders
- to map normal human brain and heart function
How should I prepare for a PET and PET/CT scan?
You may be asked to wear a gown during the exam or you may be allowed to wear your own clothing.
You should inform your physician and the technologist performing your exam of any medications you are taking, including vitamins and herbal supplements. You should also inform them if you have any allergies and about recent illnesses or other medical conditions.
You will receive specific instructions based on the type of PET scan you are undergoing. Diabetic patients will receive special instructions to prepare for this exam.
Metal objects including jewelry, eyeglasses, dentures and hairpins may affect the CT images and should be left at home or removed prior to your exam. You may also be asked to remove hearing aids and removable dental work.
Generally, you will be asked not to eat or drink anything for several hours before a whole body PET/CT scan since eating may alter the distribution of the PET tracer in your body and can lead to a suboptimal scan. This could require the scan to be repeated on another day, so following instructions regarding eating are very important. You should inform your physician of any medications you are taking and if you have any allergies, especially to contrast materials, iodine, or seafood.
You will be asked and checked for any conditions that you may have that may increase the risk of using intravenous contrast material.
How is the procedure performed?
Nuclear medicine imaging is usually performed on an outpatient basis, but is often performed on hospitalized patients as well.
You will be positioned on an examination table. If necessary, a nurse or technologist will insert an intravenous (IV) line into a vein in your hand or arm.
Depending on the type of nuclear medicine exam you are undergoing, the dose of radiotracer is then injected intravenously, swallowed or inhaled as a gas.
It will take approximately 90 minutes for the radiotracer to travel through your body and to be absorbed by the organ or tissue being studied. You will be asked to rest quietly, avoiding movement and talking.
You may be asked to drink some contrast material that will localize in the intestines and help the radiologist interpreting the study.
You will then be moved into the PET scanner and the imaging will begin. You will need to remain still during imaging. The PET scan takes 45 minutes.
What will I experience during and after the procedure?
Most nuclear medicine procedures are painless and are rarely associated with significant discomfort or side effects.
If the radiotracer is given intravenously, you will feel a slight pin prick when the needle is inserted into your vein for the intravenous line. When the radioactive material is injected into your arm, you may feel a cold sensation moving up your arm, but there are generally no other side effects.
It is important that you remain still while the images are being recorded. Though nuclear imaging itself causes no pain, there may be some discomfort from having to remain still or to stay in one particular position during imaging.
Tuesday, March 17, 2009
Upcoming schedule
This message is just to keep you informed of my schedule in the days to come.
March 18 (tomorrow): I will spend the morning at the Notre-Dame Hospital for pre-op tests: blood work, ECG, urine analysis.
here will be a scan of the thorax and abdomen but perhaps not tomorrow.
Dr Y, the surgeon, wanted to have these scans done by his hospital on top of those done at Sacred Coeur.
March 22 (Sunday) is the day of my PET scan (nuclear medecine imaging). This review is essential for my surgeon's decision-making: to operate or not.
March 23: Chimio # 15, the doses of all agents were reduced. It has been 5 weeks that I did not have chemo.
March 25: I get my bottle of chemotherapy unplugged and also my Piccline. This will allow me to swim whule in Dubai. Upon my return, according to the planning of the operation, I will have a port-o-cath installed, it's another distribution system for chemo that sits under the skin in the pectoral region, a bit like a peacemaker.
early April: departure for Dubai.
23 April: meeting with Dr. Y. Decision on the operation.
March 18 (tomorrow): I will spend the morning at the Notre-Dame Hospital for pre-op tests: blood work, ECG, urine analysis.
here will be a scan of the thorax and abdomen but perhaps not tomorrow.
Dr Y, the surgeon, wanted to have these scans done by his hospital on top of those done at Sacred Coeur.
March 22 (Sunday) is the day of my PET scan (nuclear medecine imaging). This review is essential for my surgeon's decision-making: to operate or not.
March 23: Chimio # 15, the doses of all agents were reduced. It has been 5 weeks that I did not have chemo.
March 25: I get my bottle of chemotherapy unplugged and also my Piccline. This will allow me to swim whule in Dubai. Upon my return, according to the planning of the operation, I will have a port-o-cath installed, it's another distribution system for chemo that sits under the skin in the pectoral region, a bit like a peacemaker.
early April: departure for Dubai.
23 April: meeting with Dr. Y. Decision on the operation.
Thursday, March 12, 2009
Medical appointment update
Well! We had a big day for appointments and information. I will summarize it.
Dr C. prescribed chemotherapy next week. It will be Wednesday. The doses of each chemotherapy agent have been reduced. For the PET scan that we wanted to have Monday, it's pretty hard. If the trend continues I will go in the private sector even if it costs an arm and a leg.
Dr. Y told us his vision. It seems that I have 2 strikes against me even before you begin: metastasis to the liver, the extent of the disease (he explained that even if we do not see cancer anymore several areas were still affected). He told me about the statistics and as you know they do not interest me. He had to do it because if he accepts to operate it is a very difficult procedure. My stay at the hospital will be about a month (including a week in intensive care) and recovery should be about three months. So he wanted me to take an informed decision. I also believe that he tested my determination.
He now has to talk to a colleague before making his final decision (operate or not). In the meantime he will have me go through the pre-op testing. A series of tests before the end of March for a possible late April early May surgery. If the doctor agrees to operate, and I am confident he will accept. The three months of recovery will be very hard but not as much on me as on my wife and children. It will be in this period that I count on you a lot to offer support and assistance to Marie-Josée. I will have a single focus, get back full health with the fewest complications.
Finally, there is good news, my markers are now 5.4, very near the normal range.
Good weekend!
Dr C. prescribed chemotherapy next week. It will be Wednesday. The doses of each chemotherapy agent have been reduced. For the PET scan that we wanted to have Monday, it's pretty hard. If the trend continues I will go in the private sector even if it costs an arm and a leg.
Dr. Y told us his vision. It seems that I have 2 strikes against me even before you begin: metastasis to the liver, the extent of the disease (he explained that even if we do not see cancer anymore several areas were still affected). He told me about the statistics and as you know they do not interest me. He had to do it because if he accepts to operate it is a very difficult procedure. My stay at the hospital will be about a month (including a week in intensive care) and recovery should be about three months. So he wanted me to take an informed decision. I also believe that he tested my determination.
He now has to talk to a colleague before making his final decision (operate or not). In the meantime he will have me go through the pre-op testing. A series of tests before the end of March for a possible late April early May surgery. If the doctor agrees to operate, and I am confident he will accept. The three months of recovery will be very hard but not as much on me as on my wife and children. It will be in this period that I count on you a lot to offer support and assistance to Marie-Josée. I will have a single focus, get back full health with the fewest complications.
Finally, there is good news, my markers are now 5.4, very near the normal range.
Good weekend!
Tuesday, March 10, 2009
Stabilization
I am writing today March 10 to announce that my condition seemed to stabilize more than two weeks after the beginning of my diarrhea. As I said earlier it was a difficult period, both physicaly and the psychologicaly. It is a vicious circle which I managed to get out of today thanks to my wife and my brother Omer. Marie-Josée found this period difficult but she was able to give me reason to hold on to and change my paradigm. Let me explain: My body was losing strength because of diarrhea and so was my mind. I could not explain why this was happening, even though deep down I knew that it was a side effect of my new chemo. Being aware of this fact did not really help me justify the severity of the effect. The first turning point was provided Marie-Josée. In her readings on the Internet, she shared an anecdote of a patient who received irinotecan, whom also had diarrhea. This patient sayd It was a strong dose of irinotecan that gave such a severe case of diarrhea but the outcome was that all her metastases had disappear after this treatment. This story gave me a positive spin out of my downward spiral. Now my position is that the diarrhea was caused by a high dose combined with the fact that I probably have no more cancer so the chemotherapy only had my gut to attack. Me, I buy this version. This can not be confirmed until a few weeks but now my mood is in better health. The cherry on the sunday was the call from my brother Omer today. He offered to have a coffee in my neighbourhood. Omer and I do this from time to time when his work brings him in my neck of the woods. It had been a while so today's invitation was welcomed. Even though my moral was better, I lacked a little something to be fully motivated. 30 minutes chatting with him pumped me up and completed my recovery.
Thank you to my wife and my brother. It's amazing what a good timing can do for someone.
Here is the schedule for the coming days:
Thursday I meet with Dr. C, hematologist. She will probably prescribe chemo next week.
Then, Thursday at noon I meet the surgeon dr Y. I look forward to have his opinion and at the same time I fear will not hear what I want.
Since diarrhea delayed my treatment, Marie-Josée saw an opportunity to do the PET scan earlier. So we are waiting to see if next Monday, there would be a spot for me. We strongly hope.
Finally we continue to plan the trip to Dubai. The aircraft is booked and the hotel too. Children are keen to go skiing in the inside ski resort. There are plenty of other activities that we expect to do. We will be glad to share the first eight days there with grandpa Yvon and Loulou. We are fortunate to have our reception committee on site. I will let you know about my medical visits as soon as I can.
Thank you to my wife and my brother. It's amazing what a good timing can do for someone.
Here is the schedule for the coming days:
Thursday I meet with Dr. C, hematologist. She will probably prescribe chemo next week.
Then, Thursday at noon I meet the surgeon dr Y. I look forward to have his opinion and at the same time I fear will not hear what I want.
Since diarrhea delayed my treatment, Marie-Josée saw an opportunity to do the PET scan earlier. So we are waiting to see if next Monday, there would be a spot for me. We strongly hope.
Finally we continue to plan the trip to Dubai. The aircraft is booked and the hotel too. Children are keen to go skiing in the inside ski resort. There are plenty of other activities that we expect to do. We will be glad to share the first eight days there with grandpa Yvon and Loulou. We are fortunate to have our reception committee on site. I will let you know about my medical visits as soon as I can.
Thursday, March 5, 2009
A week in Hell
Hello to you all.
The last week has been painful. In fact, it was the worst week since the beginning of my treatments. Normally after the chemo I sleep a few days and I feel like Sleeping Beauty who wakes up a little more each day. Except for last week when the day I usually feel normal, I began diarrhea. It was Friday 18:30. It lasted until Wednesday of the next week, or yesterday. Diarrhea as I've never had in my life. I followed the Imodium protocol I had received from the hospital pharmacist, but things did not change. This protocol requires taking 2 tablets of 2 mg at the onset of diarrhea followed by one tablet every 2 hours (2 tabs every 4 hours at night). I continue this until 12 hours has elapsed since the last diarrhea.
I did that Friday, Saturday and Sunday. Come Monday I called the hospital because the danger of this type of diarrhea is dehydration, and all of its consequences. I was therefore instructed to go to the hospital Monday to meet Dr L, to do a blood test and then receive a glucose solution intraveinously. I saw Dr. L. He looked at the results of my blood sample and I was not dehydrated so I didn't get the intraveinous solution. Still, I am really tired. My next chemo is scheduled for Wednesday but the doc believes that we should make the decision Wednesday morning.
In the meantime, he prescribed Sandostatin. A powerful drug, given by subcutaneous injection, to control peristalsis (bowel movement). It is imperative to calm the frenzy in my belly. As I have a generalized itching and I think it is the Imodium, he substituted it with Lomotil. For Sandostatin I receive the first dose at the hospital under observation in case of allergic reaction. Small administrative errors were made so I had to wait 3 hours before receiving my injection. That evening my wife stuck a needle in me once for Neupogen and 2 times for Sandostatin (the pharmacy had only vials of 100 mcg while I need 200 mcg). My stomach began to calm down. I could sleep a little better.
Sleep. It was not so easy with the Imodium protocol since I had to set my alarm clock for the night dose, at least Sandostatin provided a good night.
The next morning my upper lip looked like itwas injected with collagen. Josée thought I was having a stroke. I reassured her but my mouth really looked weird. I therefore decided not to receive the morning dose of Sandostatin should it be responsible for the swelling (or allergic reaction).
I turned to Lomotil, 2 tabs q4h (2 tablets every four hours). Wednesday morning, a day of planned chemotherapy and where I met Dr. L. at 8:30. Danielle (Josée's aunt) came to the house to babysit. Upon entering the office of the doc, he noticed that I did not look my best. I confirmed that it was slowly getting better but I am still very tired. We agree to postpone chemo to next Monday. I want to be in top shape a few days before falling down again with chemo. In discussing with Dr L., I admitted I was scared this week. He said "me too".
I was afraid of not being able to get out of this diarrhea or to have to eliminate Irinotecan from my arsenal too early (three doses). He reassured me. Several options are still available and the first is a reduction in the dose of irinotecan. He mentioned that as we have an aggressive attitude, so was the dose. For the next treatment everything will be adjusted. It will be adjusted not only according to the scale but also because I lost 7 pounds (about 3 kg) in the last week. I went from 170 to 163. When the hospital pharmacist called me to check my weight she had 175 pounds in her notes. I hope, I am sure that the difference will be noticeable when my next treatment comes.
Regarding the itching, we don't know the cause. Wednesday while returning from the hospital we purchased some Benadryl. As Danielle was at home she kindly agreed to stay a little longer so I could take Benadryl and sink into sleep. That's what happened from 10:00 to 14:00. A very deep sleep and rest. Today, Thursday, my bowel movements seem under control. The content of my stools are still very liquid, but it's a slow return to normal.
In any case my energy level now is quite reassuring. I have 2 more chemo before taking a break in preparation for the PET scan. I do not want to relive a week as the last.
The last week has been painful. In fact, it was the worst week since the beginning of my treatments. Normally after the chemo I sleep a few days and I feel like Sleeping Beauty who wakes up a little more each day. Except for last week when the day I usually feel normal, I began diarrhea. It was Friday 18:30. It lasted until Wednesday of the next week, or yesterday. Diarrhea as I've never had in my life. I followed the Imodium protocol I had received from the hospital pharmacist, but things did not change. This protocol requires taking 2 tablets of 2 mg at the onset of diarrhea followed by one tablet every 2 hours (2 tabs every 4 hours at night). I continue this until 12 hours has elapsed since the last diarrhea.
I did that Friday, Saturday and Sunday. Come Monday I called the hospital because the danger of this type of diarrhea is dehydration, and all of its consequences. I was therefore instructed to go to the hospital Monday to meet Dr L, to do a blood test and then receive a glucose solution intraveinously. I saw Dr. L. He looked at the results of my blood sample and I was not dehydrated so I didn't get the intraveinous solution. Still, I am really tired. My next chemo is scheduled for Wednesday but the doc believes that we should make the decision Wednesday morning.
In the meantime, he prescribed Sandostatin. A powerful drug, given by subcutaneous injection, to control peristalsis (bowel movement). It is imperative to calm the frenzy in my belly. As I have a generalized itching and I think it is the Imodium, he substituted it with Lomotil. For Sandostatin I receive the first dose at the hospital under observation in case of allergic reaction. Small administrative errors were made so I had to wait 3 hours before receiving my injection. That evening my wife stuck a needle in me once for Neupogen and 2 times for Sandostatin (the pharmacy had only vials of 100 mcg while I need 200 mcg). My stomach began to calm down. I could sleep a little better.
Sleep. It was not so easy with the Imodium protocol since I had to set my alarm clock for the night dose, at least Sandostatin provided a good night.
The next morning my upper lip looked like itwas injected with collagen. Josée thought I was having a stroke. I reassured her but my mouth really looked weird. I therefore decided not to receive the morning dose of Sandostatin should it be responsible for the swelling (or allergic reaction).
I turned to Lomotil, 2 tabs q4h (2 tablets every four hours). Wednesday morning, a day of planned chemotherapy and where I met Dr. L. at 8:30. Danielle (Josée's aunt) came to the house to babysit. Upon entering the office of the doc, he noticed that I did not look my best. I confirmed that it was slowly getting better but I am still very tired. We agree to postpone chemo to next Monday. I want to be in top shape a few days before falling down again with chemo. In discussing with Dr L., I admitted I was scared this week. He said "me too".
I was afraid of not being able to get out of this diarrhea or to have to eliminate Irinotecan from my arsenal too early (three doses). He reassured me. Several options are still available and the first is a reduction in the dose of irinotecan. He mentioned that as we have an aggressive attitude, so was the dose. For the next treatment everything will be adjusted. It will be adjusted not only according to the scale but also because I lost 7 pounds (about 3 kg) in the last week. I went from 170 to 163. When the hospital pharmacist called me to check my weight she had 175 pounds in her notes. I hope, I am sure that the difference will be noticeable when my next treatment comes.
Regarding the itching, we don't know the cause. Wednesday while returning from the hospital we purchased some Benadryl. As Danielle was at home she kindly agreed to stay a little longer so I could take Benadryl and sink into sleep. That's what happened from 10:00 to 14:00. A very deep sleep and rest. Today, Thursday, my bowel movements seem under control. The content of my stools are still very liquid, but it's a slow return to normal.
In any case my energy level now is quite reassuring. I have 2 more chemo before taking a break in preparation for the PET scan. I do not want to relive a week as the last.
Wednesday, February 25, 2009
Run a half-marathon... checked
Not me, Marie-Josée. You remember she was training for that. She wanted to do it in September 2008 but things happened.
Well she ran the hypothermic half-marathon this Saturday February 21 at Parc Jean-Drapeau.
A race of 21.1 km along the river at -15 celsius with westerly winds of 25 km/h. She did it with an injured knee but still managed a time of 2:34. Note that I'm not saying that she finished it, because for me that was a given. It's her time that impresses me. Imagine in the summer with a healthy knee she will certainly do it in 2h15, a very respectable time for a second half-marathon.
After that I feel small when I can not kick myself in the ass to go 3 km on the treadmill.
Here are some photos:
Well she ran the hypothermic half-marathon this Saturday February 21 at Parc Jean-Drapeau.
A race of 21.1 km along the river at -15 celsius with westerly winds of 25 km/h. She did it with an injured knee but still managed a time of 2:34. Note that I'm not saying that she finished it, because for me that was a given. It's her time that impresses me. Imagine in the summer with a healthy knee she will certainly do it in 2h15, a very respectable time for a second half-marathon.
After that I feel small when I can not kick myself in the ass to go 3 km on the treadmill.
Here are some photos:
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Tuesday, February 17, 2009
Chemo #14
I'm sitting at the dining table sipping my green tea after my peanut butter toasts. Marie-Josée is in front of me making her morning tour of her favorite websites (Facebook, email, blog about cancer, my blog, news). I take the time to write this blog before leaving for the hospital where I should receive my chemo # 14 (3rd Folfiri).
Yesterday I had an appointment with Dr. L.. Guess what? He talked to me about surgery. He said he had reviewed my case with my surgeon and Dr. P the best radiologist in the hospital. They agreed that the reduction in cancer was important. This led me to ask if I was in remission. He said in partial remission ... YES!
Then he told me he had spoken to a surgeon at Maisonneuve-Rosemont for the super specialized operation called HIPEC. The surgeon, given the presence of a spot on the liver, no matter how small, has refused to take my case. He considers that I need to continue chemo to reduce whatever is left, the less there is the better.
But in our conversation with Dr. L. we talked about another surgeon that can do the HIPEC, Dr Y.
Dr L. said he would call to ask for his opinion. We must understand that in the case of this kind of surgery there is no consensus among surgeons. Dr Y is at the CHUM (Montreal University hospital network) therefore practice philosophy is sometimes different from one hospital to another.
Yesterday evening I received the call from Dr. L who told me that he spoke directly to Dr Y about my case. The latter agreed to meet me in 3 weeks. This will be a preliminary meeting where I expect he will explain the reasons why I am a candidate or not for this surgery. Dr Y has requested a PET scan before giving its final decision on the feasibility of the operation. As this examination requires a cessation of chemotherapy for a period of 3 weeks before, we will take this opportunity to go to Dubai. We will be there 2 weeks and my stepfather and his wife will be with us for 8 days (they live in Kuwait, just next door ;-). They will retrieve my Piccline and I'll get a port-o-cath installed when I come back. A Port-o-cath is a system of distribution for the chemo which is implanted under the skin like a pacemaker. This has the advantage of allowing me to bathe, take a shower without worry of a bandage and a direct opening to my heart.
All this to tell you we were excited yesterday, partial remission, exploration of the possibility of surgery, yes sir!
There was just a little news that brought us back on earth, my markers went up rather than down. My CEA were 8.8 (6.2 last time). Dr L. as usual is quite stoic. His comment was "This shows that we made the change in treatment at the right time." In other words, it could be a possible indication that FOLFOX started to lose its effect. There was a slowdown when one considers the trend of the CEA markers(13, 12, 10, 7, 6.7, 6.2, 8.8). Of course the toxicity forced us to change but what he says is that the efficiency points to this change also. So for him Folfiri is a good deal at this point.
I gotta go. There may be no blog for a few days but don't worry too much.
Yesterday I had an appointment with Dr. L.. Guess what? He talked to me about surgery. He said he had reviewed my case with my surgeon and Dr. P the best radiologist in the hospital. They agreed that the reduction in cancer was important. This led me to ask if I was in remission. He said in partial remission ... YES!
Then he told me he had spoken to a surgeon at Maisonneuve-Rosemont for the super specialized operation called HIPEC. The surgeon, given the presence of a spot on the liver, no matter how small, has refused to take my case. He considers that I need to continue chemo to reduce whatever is left, the less there is the better.
But in our conversation with Dr. L. we talked about another surgeon that can do the HIPEC, Dr Y.
Dr L. said he would call to ask for his opinion. We must understand that in the case of this kind of surgery there is no consensus among surgeons. Dr Y is at the CHUM (Montreal University hospital network) therefore practice philosophy is sometimes different from one hospital to another.
Yesterday evening I received the call from Dr. L who told me that he spoke directly to Dr Y about my case. The latter agreed to meet me in 3 weeks. This will be a preliminary meeting where I expect he will explain the reasons why I am a candidate or not for this surgery. Dr Y has requested a PET scan before giving its final decision on the feasibility of the operation. As this examination requires a cessation of chemotherapy for a period of 3 weeks before, we will take this opportunity to go to Dubai. We will be there 2 weeks and my stepfather and his wife will be with us for 8 days (they live in Kuwait, just next door ;-). They will retrieve my Piccline and I'll get a port-o-cath installed when I come back. A Port-o-cath is a system of distribution for the chemo which is implanted under the skin like a pacemaker. This has the advantage of allowing me to bathe, take a shower without worry of a bandage and a direct opening to my heart.
All this to tell you we were excited yesterday, partial remission, exploration of the possibility of surgery, yes sir!
There was just a little news that brought us back on earth, my markers went up rather than down. My CEA were 8.8 (6.2 last time). Dr L. as usual is quite stoic. His comment was "This shows that we made the change in treatment at the right time." In other words, it could be a possible indication that FOLFOX started to lose its effect. There was a slowdown when one considers the trend of the CEA markers(13, 12, 10, 7, 6.7, 6.2, 8.8). Of course the toxicity forced us to change but what he says is that the efficiency points to this change also. So for him Folfiri is a good deal at this point.
I gotta go. There may be no blog for a few days but don't worry too much.
Thursday, February 5, 2009
Confirmation of the good news
Tuesday I went to the hospital because I had an appointment with a haematologist. It was also the scheduled day of chemotherapy but the results of my blood test on Monday was 1.1 so in theory too low for chemo. I will talk further about it later. In the absence of Dr L this week I met Dr. C. a haematologist who returns from a one-year fellowship in Australia. We were told she was excellent and very nice. She saw my file for the first time. As soon as we entered the office her first comment was.
-Wow! You have an excellent response to Folfox. Marie-Josée and I have looked at each other with an amused look. Our faces seemed to say: Well! We kind of thought so but we were waiting for confirmation from a haematologist.
At this point I said:
-In fact, it's over with Folfox since I had a severe reaction to the oxaliplatin, so we started Folfiri two weeks ago and that is why we have this appointment... a question of checking if there is any issue with the new treatment.
- And how are you?
-Very good. I answered her.
Then she takes a glance at my record, she looked at me and said: "I imagine that you want to receive your treatment today. Again Josée and I looked at each other with a smile. Well, for sure it would be great but I'm 1.1, we are kind of resigned for a delay.
She replied:-There is no reason.
She continued.
-Recent studies have shown that the treatment may, in some cases be given at 0.5. As you were at 1.1 yesterday, I am convinced that you are this morning at 1.3 ... 1.4. Plus you look young and fit then I see no indications against treatment today.
Should I prescribe it?
-Let’s go!
That sums up the story of the treatment that was cancelled but finally got prescribed. Nurses were kind of ready for it to happen because it seems that since Dr C. returned she is somewhat rewriting the established guidelines, with a smile of course. Looking at my records she raised another important point.
-You have consulted Dr. W.
-Yes, we were referred, and we wanted a second opinion on the exploratory surgery in July (see blog of August). In addition, this allowed me to be listed as one of his patients for surgery when appropriate.
It was a question of planning.
-What did he say?
-He confirmed the report and confirmed with great empathy that I was a very advanced case. He also opened the door to hope by saying that if the chemo worked well and I became a candidate for surgical specialist (called Hipec), he would submit my case to his colleague.
-Dr Younan.
-No, Dr Loungnarath.
-I know Dr. Younan and if you want I can submit your file to get his opinion as to the suitability of your case for surgery. Naturally in agreement with Dr. L.
Here, I went wild. A month ago I had the idea that it would be a longer battle than I had visualized. Finally, the doctor gives me hope that a late spring early summer could be possible. In any case it is the first haematologist to open the door to the surgery which was the objective from the beginning.
I was so pleased that throughout my treatment Josée observed that I had a smirk just like a little boy. She smiled widely herself.
In conclusion, an excellent day for our family. I continue to work on the remaining small spots around the liver and we’ll be talking about surgery soon.
-Wow! You have an excellent response to Folfox. Marie-Josée and I have looked at each other with an amused look. Our faces seemed to say: Well! We kind of thought so but we were waiting for confirmation from a haematologist.
At this point I said:
-In fact, it's over with Folfox since I had a severe reaction to the oxaliplatin, so we started Folfiri two weeks ago and that is why we have this appointment... a question of checking if there is any issue with the new treatment.
- And how are you?
-Very good. I answered her.
Then she takes a glance at my record, she looked at me and said: "I imagine that you want to receive your treatment today. Again Josée and I looked at each other with a smile. Well, for sure it would be great but I'm 1.1, we are kind of resigned for a delay.
She replied:-There is no reason.
She continued.
-Recent studies have shown that the treatment may, in some cases be given at 0.5. As you were at 1.1 yesterday, I am convinced that you are this morning at 1.3 ... 1.4. Plus you look young and fit then I see no indications against treatment today.
Should I prescribe it?
-Let’s go!
That sums up the story of the treatment that was cancelled but finally got prescribed. Nurses were kind of ready for it to happen because it seems that since Dr C. returned she is somewhat rewriting the established guidelines, with a smile of course. Looking at my records she raised another important point.
-You have consulted Dr. W.
-Yes, we were referred, and we wanted a second opinion on the exploratory surgery in July (see blog of August). In addition, this allowed me to be listed as one of his patients for surgery when appropriate.
It was a question of planning.
-What did he say?
-He confirmed the report and confirmed with great empathy that I was a very advanced case. He also opened the door to hope by saying that if the chemo worked well and I became a candidate for surgical specialist (called Hipec), he would submit my case to his colleague.
-Dr Younan.
-No, Dr Loungnarath.
-I know Dr. Younan and if you want I can submit your file to get his opinion as to the suitability of your case for surgery. Naturally in agreement with Dr. L.
Here, I went wild. A month ago I had the idea that it would be a longer battle than I had visualized. Finally, the doctor gives me hope that a late spring early summer could be possible. In any case it is the first haematologist to open the door to the surgery which was the objective from the beginning.
I was so pleased that throughout my treatment Josée observed that I had a smirk just like a little boy. She smiled widely herself.
In conclusion, an excellent day for our family. I continue to work on the remaining small spots around the liver and we’ll be talking about surgery soon.
Wednesday, January 28, 2009
Celebration time
Today was a day of celebration.
You've read my blog on the visit to Dr. L and the scan results that were vague?
Dr L did not give us more details yet but we, through our connections, obtained the opinion of the surgeon who operated me in July. In essence the person that really saw what I had in my belly.
In fact, Marie-Josée had an appointment with her to receive the results of her breastst ultrasound. On this subject, everything is good. The surgeon ruled out the presence of breast cancer. That's our first celebration.
Then, Marie-Josée took the opportunity to submit all my scan reports. The July 21, the October 14 and the January 13 reports. Naturally, she did not really read the July report because she already knew the content since she had requested it. She read the January 13 and went back to read the October 14 . She, who had described to Josée the tumors in my abdomen, is adament. I respond remarkably well to the chemo and Avastin because the 30 centimeters mass is gone. She even said it was a miracle. Celebrations are in order. Marie-Josée is ecstatic. I am very happy too. I refrain from too much joy though. On the one hand my hematologist has not shown the same enthusiasm and on the other hand there are still a few small spots near the liver and right colon area. The battle is not over.
Don't get me wrong, I am not pessimistic. I am extremely happy. I have a large grin, the kind that says: Told ya this / "$ @ tumor would vanished. But I admit that I am looking forward to Dr L telling me: Mr. Raymond we have reached our goal, you are in remission. There is no doubt that I will be ecstatic then.
In the mean time we continue to smile, fight and tonight we made a toast to the disappearance of the monster in my belly.
To Health!
You've read my blog on the visit to Dr. L and the scan results that were vague?
Dr L did not give us more details yet but we, through our connections, obtained the opinion of the surgeon who operated me in July. In essence the person that really saw what I had in my belly.
In fact, Marie-Josée had an appointment with her to receive the results of her breastst ultrasound. On this subject, everything is good. The surgeon ruled out the presence of breast cancer. That's our first celebration.
Then, Marie-Josée took the opportunity to submit all my scan reports. The July 21, the October 14 and the January 13 reports. Naturally, she did not really read the July report because she already knew the content since she had requested it. She read the January 13 and went back to read the October 14 . She, who had described to Josée the tumors in my abdomen, is adament. I respond remarkably well to the chemo and Avastin because the 30 centimeters mass is gone. She even said it was a miracle. Celebrations are in order. Marie-Josée is ecstatic. I am very happy too. I refrain from too much joy though. On the one hand my hematologist has not shown the same enthusiasm and on the other hand there are still a few small spots near the liver and right colon area. The battle is not over.
Don't get me wrong, I am not pessimistic. I am extremely happy. I have a large grin, the kind that says: Told ya this / "$ @ tumor would vanished. But I admit that I am looking forward to Dr L telling me: Mr. Raymond we have reached our goal, you are in remission. There is no doubt that I will be ecstatic then.
In the mean time we continue to smile, fight and tonight we made a toast to the disappearance of the monster in my belly.
To Health!
Wednesday, January 21, 2009
90 degree turn
Yesterday I received my 12th Folfox treatment (leucovorin/5-FU/Oxaliplatine).
In fact, I have not received it in full because only 3 minutes after the start of the oxaliplatin (which is given over 2 hours) I had an allergic reaction with a major drop in blood pressure. That was enough to spike the stress level of the nurse and my wife. The nurse who took care of me was tensed when she saw my pressure drop to 80/53 in a few seconds. I went from scarlet red to green/white according to my wife. I sweated profusely. I felt like a rock was in my stomach that gave me nausea. I had also an urgentneed to defecate. All this despite 50 mg of Benadryl given in prophylaxis. This whole episode lasted about 10 minutes during which they gave me a shot Solu-Cortef to stop the reaction and try to raise my blood pressure. When my blood pressure started to come back to normal they added another 25mg of Benadryl. Naturally they stopped the Oxaliplatin right away.
We knew that one day I would no longer tolerate this poison but I believed it would be later. Let's say we had to go to option #2 a bit earlier.
Option #2 is is Folfiri. It is almost the same cocktail with the exception of oxalipatine which is replaced by Irinotecan (Camptosar). The latter has different side effects than the Oxaliplatin. Instead of the neuropathy which gave me a hypersensitivity to cold in the form of tingling in the fingertips, nose and toes, I will now have to manage diarrhea.
So I went back to hospital today to get my Folfiri. It is 22:30 when I write this blog and the treatment is well tolerated.
The positive side:
-My fingers are expected to return to normal within a few weeks
-The product change could have a beneficial effect and accelerate the disappearance of the lesions. You should know that cancer cells are smart and can adapt to the poison that we throw at them and successfully resist after a while. So, changing the poison can surprise the cells and lead to better response. Cross our fingers.
Conclusion we must always be ready to take a 90 degrees turn.
In fact, I have not received it in full because only 3 minutes after the start of the oxaliplatin (which is given over 2 hours) I had an allergic reaction with a major drop in blood pressure. That was enough to spike the stress level of the nurse and my wife. The nurse who took care of me was tensed when she saw my pressure drop to 80/53 in a few seconds. I went from scarlet red to green/white according to my wife. I sweated profusely. I felt like a rock was in my stomach that gave me nausea. I had also an urgentneed to defecate. All this despite 50 mg of Benadryl given in prophylaxis. This whole episode lasted about 10 minutes during which they gave me a shot Solu-Cortef to stop the reaction and try to raise my blood pressure. When my blood pressure started to come back to normal they added another 25mg of Benadryl. Naturally they stopped the Oxaliplatin right away.
We knew that one day I would no longer tolerate this poison but I believed it would be later. Let's say we had to go to option #2 a bit earlier.
Option #2 is is Folfiri. It is almost the same cocktail with the exception of oxalipatine which is replaced by Irinotecan (Camptosar). The latter has different side effects than the Oxaliplatin. Instead of the neuropathy which gave me a hypersensitivity to cold in the form of tingling in the fingertips, nose and toes, I will now have to manage diarrhea.
So I went back to hospital today to get my Folfiri. It is 22:30 when I write this blog and the treatment is well tolerated.
The positive side:
-My fingers are expected to return to normal within a few weeks
-The product change could have a beneficial effect and accelerate the disappearance of the lesions. You should know that cancer cells are smart and can adapt to the poison that we throw at them and successfully resist after a while. So, changing the poison can surprise the cells and lead to better response. Cross our fingers.
Conclusion we must always be ready to take a 90 degrees turn.
Tuesday, January 20, 2009
A Beautiful Holiday Season
The holiday period is already over but it was lots of fun. We had a schedule to our taste. We attended two shows. The first was High School Musical the Ice Tour. For those familiar with this ice version of this musical it incorporates HSM 1 and 2. High School Musical III will b e out soon. Thank you to Francine and Geneviève which enabled us to see this show. The timing was perfect since Tristan is preparing a year-end show at school based on HSM 2.
The second show that we saw during the holiday season is the classic Nutcracker at Place des Arts. Last-minute decision, typical I believe, of families in our situation. An excellent show for the well known musical pieces as well as its magnificent decor. A great way to introduce children to live classical music and ballet.
We also had rest days, without specific schedule. During these days we were out of bed later, the day was spent in pyjamas playing some of the games children received for Christmas. Mom played dolls (Barbies) with Élodie and Dad played with the boys on the Xbox and a game Monopoly World Edition.
We also played street hockey with Jordan putting on his new goalie equipment. Jordan loves to play in goals and Tristan with his experience in hockey cosom is an excellent forward. Élodie, she likes to be outside with her brothers but do not like hockey that much.
The children were given beautiful gifts. They played a lot during this holiday season. They also love their digital photo camera. Grandpa Santa, gave them an excellent quality compact camera with which they can all let go their artistic side with glee. Long live digital!
I’d like to say thank you to all our hosts. It is certain that the holidays are less tiring when you are not the host but the guest. I speak mostly on behalf of Marie-Josée because she has the most to do in these situations. So thank you to Pierre and Sandrine, Lilianne and Bob, Johanne and Gen, Danielle and Bill and Grandpa and Loulou.
Thank you to Grandpa who invited us to the restaurant where he made sure to have live piano just for us during dinner… and after. Beautiful evening where Josée took the opportunity to relax completely (with a little help of an excellent bottle of wine ;-).
I say a big thank you to my brother Jocelyn who came before Christmas to clean the garage under the instructions of MJ. Thanks to him, now we could fit MJ’s car in the garage. That is until we bought the treadmill. It occupies all the space but now it's for a good cause. Josée can continue her training when the temperature does not allow for outside running. I also use it when I can, and even the children use it. Élodie is doing her 1 Km while Tristan and Jordan go for 3 Km. Mom is very motivating for her children, they want to imitate.
Finally, I want to thank Guy Boucher, a friend who is primarily a friend of Pierre, who coaches in the junior hockey league. He was appointed assistant coach to Pat Quinn at the world junior hockey championship, which took place in Ottawa. He called me to offer me tickets. I unfortunately had to refuse his offer but I am grateful to him for thinking of me and my boys for the occasion.
This message can be late but I started to write on January 6. I delayed it because I had the inspiration for other shorter messages more relevant over time and so on. Still, I really wanted to express our thanks to everyone who is part of our support network. You are so important in the situation we live.
Thank you!
The second show that we saw during the holiday season is the classic Nutcracker at Place des Arts. Last-minute decision, typical I believe, of families in our situation. An excellent show for the well known musical pieces as well as its magnificent decor. A great way to introduce children to live classical music and ballet.
We also had rest days, without specific schedule. During these days we were out of bed later, the day was spent in pyjamas playing some of the games children received for Christmas. Mom played dolls (Barbies) with Élodie and Dad played with the boys on the Xbox and a game Monopoly World Edition.
We also played street hockey with Jordan putting on his new goalie equipment. Jordan loves to play in goals and Tristan with his experience in hockey cosom is an excellent forward. Élodie, she likes to be outside with her brothers but do not like hockey that much.
The children were given beautiful gifts. They played a lot during this holiday season. They also love their digital photo camera. Grandpa Santa, gave them an excellent quality compact camera with which they can all let go their artistic side with glee. Long live digital!
I’d like to say thank you to all our hosts. It is certain that the holidays are less tiring when you are not the host but the guest. I speak mostly on behalf of Marie-Josée because she has the most to do in these situations. So thank you to Pierre and Sandrine, Lilianne and Bob, Johanne and Gen, Danielle and Bill and Grandpa and Loulou.
Thank you to Grandpa who invited us to the restaurant where he made sure to have live piano just for us during dinner… and after. Beautiful evening where Josée took the opportunity to relax completely (with a little help of an excellent bottle of wine ;-).
I say a big thank you to my brother Jocelyn who came before Christmas to clean the garage under the instructions of MJ. Thanks to him, now we could fit MJ’s car in the garage. That is until we bought the treadmill. It occupies all the space but now it's for a good cause. Josée can continue her training when the temperature does not allow for outside running. I also use it when I can, and even the children use it. Élodie is doing her 1 Km while Tristan and Jordan go for 3 Km. Mom is very motivating for her children, they want to imitate.
Finally, I want to thank Guy Boucher, a friend who is primarily a friend of Pierre, who coaches in the junior hockey league. He was appointed assistant coach to Pat Quinn at the world junior hockey championship, which took place in Ottawa. He called me to offer me tickets. I unfortunately had to refuse his offer but I am grateful to him for thinking of me and my boys for the occasion.
This message can be late but I started to write on January 6. I delayed it because I had the inspiration for other shorter messages more relevant over time and so on. Still, I really wanted to express our thanks to everyone who is part of our support network. You are so important in the situation we live.
Thank you!
Monday, January 19, 2009
Appointment with my hematologist - Dr L
Yes, this morning we had an appointment with Dr. L. Important appointment as we reviewed the report of the last scan. Time goes by so fast. In short, the results are positive. There ais a slight regression in the words of the radiologist. One of the spot around my liver has shrunk from 11 mm to 7 mm. I bet you this one will be gone on the next scan. The Dr was happy even though he was not super excited. He shared MJ's view, to say that the regression is slow. Yet again things are going in the right direction. The report also indicates that Dr. L should continue with treatment without any change yet. Markers? My CEA is now at 6.2 (6.4 last time) It is a small difference but again in the right direction.
What has been the most fascinating in this meeting is that the radiologist's report is rather vague and we noted that in all three scan reports no mention of the 30 cm mass seen by the surgeon in July. When we asked Dr L what happened to this mass, he could not answer us. So it is intriguing. Stay tuned because Dr. L has promised to call the radiologist and ask for more details.
Remember this, Qui va piano va sano, slowly but surely... it is a philosophy that fits my character. When it comes to beating cancer I have all the time on earth.
Stay tuned!
What has been the most fascinating in this meeting is that the radiologist's report is rather vague and we noted that in all three scan reports no mention of the 30 cm mass seen by the surgeon in July. When we asked Dr L what happened to this mass, he could not answer us. So it is intriguing. Stay tuned because Dr. L has promised to call the radiologist and ask for more details.
Remember this, Qui va piano va sano, slowly but surely... it is a philosophy that fits my character. When it comes to beating cancer I have all the time on earth.
Stay tuned!
Sunday, January 11, 2009
It's Not Fair
MJ recently told me with great emotion that it was not fair that our children have to live with the cancer of a parent. I immediately played it down by saying that this would make them even more able to listen to others, they will get mature faster, that it is a test of character.
Yesterday we went skiing. It was the 4th day post chemotherapy # 11. I felt better than I would have thought. I contributed to the preparation and I even drove all the way up. We arrived at Mount Habitant and we were on the slopes at noon. The cold didn't seem to affect me too much. I made two runs and we took a break. Lunch, rest and restroom ... I did not return. The energy had left my body like thief, quickly without warning. Marie-Josée returned on the slopes with the three children. Meanwhile, I took off my boots, put the equipment in the van and fell asleep in the front seat. I was awakened by a call on my cell phone. It was MJ but I did not respond in time. So I got out of the van and went towards the lift. I saw Josée going to the bathroom with Élodie. The two boys went for a run on their own. I felt horrible when I realized that I could not help my wife to handle the children, ouch! Marie-Josée despite my insistence tok care of Élodie's needs. I went back in the car. I did not go back to sleep but I rested enough to the point where I felt my energy replenished. So I participated in packing up the equipment at the end of the day of skiing: 15:40.
In less than three hours of skiing, the family managed to do 7 runs (even 8 for Tristan who made a solo run). Then I insisted on taking the wheel even if my wife offered to take it. Although it felt essential to have a coffee at Tim's in St-Sauveur. Despite the caffeine, my wife watching me, begged me to let her drive. I finally agreed when we got to Mirabel, where as soon as I sat on the passenger seat, I fell asleep like a child. I woke up in the Costco parking in Boisbriand when my wife and my oldest emptied the shopping cart. I had been sleeping for 45 minutes. My wife was smiling and my oldest was just as excited to be the man of the family.
This is where I cracked.
I started to cry and I said to my wife, it's not fair ...
MJ surprised, wondered what's wrong? It's not fair that my children have to live with my cancer. It's not fair that my kids have to grow old so quickly.
Tristan continued to act as a man when we arrived home. He emptied the van with his mother, he got wood inside for the fireplace and he did everything with a smile and the strength of a young man. Remember he is 11 years old, not 13, not 15, eleven years old. Jordan, my 9 year old son, pitched in by starting the fire. Emotions are mixed in a period like that. I am proud to have children like mine, but at the same time, I felt like half a man. Unable to help. My wife has to bear a huge burden because of cancer. A life that we were strolling through with two active adults in full possession of their means, it is quite another thing when it becomes 1 and a quarter of an adult. The division of labor is not equal, MJ is now taking 1 and 3 / 4 of the responsibilities while I take a mere 1 / 4. Worse, in my days post-chemo, I do nothing and I become a burden.
This is not fair.
It's crazy because justice has always been close to my heart. Most of the quarrels of my life have been because of injustice (perceived or real). Hockey, soccer, referees and players were yelled at in the name of justice or fairness. Finally, we say that cancer gives lessons that we must listen to and understand. It's hard but I try to be attentive. In this case I think someone is trying to make me understand that being too proud pride is not a good thing. Also, it is necessary that I learned to live temporarily with limitations due to my treatment and accept help from others even when others are my wife and children. I cried a bunch yesterday, I was probably due ... or I was weak because of my treatments (wink ;-) I'd have other things to say but I'd feel redundant so have a great day!
Yesterday we went skiing. It was the 4th day post chemotherapy # 11. I felt better than I would have thought. I contributed to the preparation and I even drove all the way up. We arrived at Mount Habitant and we were on the slopes at noon. The cold didn't seem to affect me too much. I made two runs and we took a break. Lunch, rest and restroom ... I did not return. The energy had left my body like thief, quickly without warning. Marie-Josée returned on the slopes with the three children. Meanwhile, I took off my boots, put the equipment in the van and fell asleep in the front seat. I was awakened by a call on my cell phone. It was MJ but I did not respond in time. So I got out of the van and went towards the lift. I saw Josée going to the bathroom with Élodie. The two boys went for a run on their own. I felt horrible when I realized that I could not help my wife to handle the children, ouch! Marie-Josée despite my insistence tok care of Élodie's needs. I went back in the car. I did not go back to sleep but I rested enough to the point where I felt my energy replenished. So I participated in packing up the equipment at the end of the day of skiing: 15:40.
In less than three hours of skiing, the family managed to do 7 runs (even 8 for Tristan who made a solo run). Then I insisted on taking the wheel even if my wife offered to take it. Although it felt essential to have a coffee at Tim's in St-Sauveur. Despite the caffeine, my wife watching me, begged me to let her drive. I finally agreed when we got to Mirabel, where as soon as I sat on the passenger seat, I fell asleep like a child. I woke up in the Costco parking in Boisbriand when my wife and my oldest emptied the shopping cart. I had been sleeping for 45 minutes. My wife was smiling and my oldest was just as excited to be the man of the family.
This is where I cracked.
I started to cry and I said to my wife, it's not fair ...
MJ surprised, wondered what's wrong? It's not fair that my children have to live with my cancer. It's not fair that my kids have to grow old so quickly.
Tristan continued to act as a man when we arrived home. He emptied the van with his mother, he got wood inside for the fireplace and he did everything with a smile and the strength of a young man. Remember he is 11 years old, not 13, not 15, eleven years old. Jordan, my 9 year old son, pitched in by starting the fire. Emotions are mixed in a period like that. I am proud to have children like mine, but at the same time, I felt like half a man. Unable to help. My wife has to bear a huge burden because of cancer. A life that we were strolling through with two active adults in full possession of their means, it is quite another thing when it becomes 1 and a quarter of an adult. The division of labor is not equal, MJ is now taking 1 and 3 / 4 of the responsibilities while I take a mere 1 / 4. Worse, in my days post-chemo, I do nothing and I become a burden.
This is not fair.
It's crazy because justice has always been close to my heart. Most of the quarrels of my life have been because of injustice (perceived or real). Hockey, soccer, referees and players were yelled at in the name of justice or fairness. Finally, we say that cancer gives lessons that we must listen to and understand. It's hard but I try to be attentive. In this case I think someone is trying to make me understand that being too proud pride is not a good thing. Also, it is necessary that I learned to live temporarily with limitations due to my treatment and accept help from others even when others are my wife and children. I cried a bunch yesterday, I was probably due ... or I was weak because of my treatments (wink ;-) I'd have other things to say but I'd feel redundant so have a great day!
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