Jordan came to us yesterday with an idea.
He said: "I want to do something but I'm too young."
I replied: "what do you want to do."
-I want to write a book about cancer he answered.
-You gotta do a lot of research to write a book about cancer.
-Well, It 's not really about cancer, but about the emotions of cancer.
Wow! I said to myself.
-So you're not too young, you can start right away. Use your little diary to record your thoughts.
He went to get his small notebook. He wrote the title: The Emotions of Cancer.
He then wrote his first sentence: I think the hardest part is learning that the person you love has cancer.
I can tell you that I had water in my eyes. At the same time I had a feeling of pride to see my 9 year old boy able to express his emotions and ready to put it in writing.
You say what you want but it's not easy to cope with our emotions and to identify them precisely. When you are capable to do it at this age we are well off in life.
Tuesday, December 30, 2008
Monday, December 29, 2008
Report on ... a Big Day
I know many of you think there is a bit too much time between blogs, especially with the last blog “Tomorrow…A Big Day” left open. Sorry.
Our meeting with Dr. L was not quite as we planned. Let's say we were, Marie-Josée and I, a little too enthusiastic and we felt he wanted to bring us back on earth. We asked very specific questions about my possible surgery: when how the decision will be taken, what are the triggers, How much the masses have to be reduced, etc.).
All these questions with a tone and an attitude of certainty in the advent of this surgery. Dr L responded with terms and particular language that had the effect of a cold shower. I felt that he thought we were a little too optimistic, that we may have had our expectations too high, and he wanted us to refocus. He mentioned that the treatment was progressing well but it is difficult to predict the response of cancer, things can change quickly. He mentioned that the main objective for him was to bring me into remission and keep me there as long as possible, suggesting along the way that the recovery was not possible. He also mentioned but without much conviction that the decision to proceed with surgery would be taken by a team of specialized surgeons, not by him. Needless to say the rest of the appointment found Marie-Josée and I pretty depressed.
However, he didn’t say anything that we did not know already. It's just that we had started to hope that things would move quickly, like having an operation in the spring, but the doc brought us back to another reality.
In these circumstances you will understand that we took a few days to reflect before we were back in the game. In the end, the doctor did his job, he tried to manage our expectations based on statistics and/or on his experience. I plan not to correspond to neither. I have said from the beginning, I have no issue being being an exceptional case and I will be in all phases of my recovery. I even told the doctor before leaving the appointment, "one day you'll use my case in your conference as anecdotal potential for Avastin.
Furthermore there was not only negative news, that day we also learned that my CEA were down to 6.4. Getting close to 5, check out the results next month.
In January, at the same time as my markers, I will have my third abdominal scan. I expect to surprise Dr L with an unexpected reduction of my large tumours.
If you were wondering about the chemotherapy of December 16, I received it as expected with a double dose of Benadryl (50 mg intravenously). I have not had an allergic reaction which is good. I had quite a buzz though. I would say that I now know why I have never taken drugs in my life (except alcohol)… because I hate the feeling. This feeling of my head in the clouds with a body that weighs a ton and sleeping without sleeping because you hear everything going on around you. I take it because it allows me to continue my chemo treatments according to plan but it is not something I would do for fun, no sir.
Until next time!
Our meeting with Dr. L was not quite as we planned. Let's say we were, Marie-Josée and I, a little too enthusiastic and we felt he wanted to bring us back on earth. We asked very specific questions about my possible surgery: when how the decision will be taken, what are the triggers, How much the masses have to be reduced, etc.).
All these questions with a tone and an attitude of certainty in the advent of this surgery. Dr L responded with terms and particular language that had the effect of a cold shower. I felt that he thought we were a little too optimistic, that we may have had our expectations too high, and he wanted us to refocus. He mentioned that the treatment was progressing well but it is difficult to predict the response of cancer, things can change quickly. He mentioned that the main objective for him was to bring me into remission and keep me there as long as possible, suggesting along the way that the recovery was not possible. He also mentioned but without much conviction that the decision to proceed with surgery would be taken by a team of specialized surgeons, not by him. Needless to say the rest of the appointment found Marie-Josée and I pretty depressed.
However, he didn’t say anything that we did not know already. It's just that we had started to hope that things would move quickly, like having an operation in the spring, but the doc brought us back to another reality.
In these circumstances you will understand that we took a few days to reflect before we were back in the game. In the end, the doctor did his job, he tried to manage our expectations based on statistics and/or on his experience. I plan not to correspond to neither. I have said from the beginning, I have no issue being being an exceptional case and I will be in all phases of my recovery. I even told the doctor before leaving the appointment, "one day you'll use my case in your conference as anecdotal potential for Avastin.
Furthermore there was not only negative news, that day we also learned that my CEA were down to 6.4. Getting close to 5, check out the results next month.
In January, at the same time as my markers, I will have my third abdominal scan. I expect to surprise Dr L with an unexpected reduction of my large tumours.
If you were wondering about the chemotherapy of December 16, I received it as expected with a double dose of Benadryl (50 mg intravenously). I have not had an allergic reaction which is good. I had quite a buzz though. I would say that I now know why I have never taken drugs in my life (except alcohol)… because I hate the feeling. This feeling of my head in the clouds with a body that weighs a ton and sleeping without sleeping because you hear everything going on around you. I take it because it allows me to continue my chemo treatments according to plan but it is not something I would do for fun, no sir.
Until next time!
Wednesday, December 24, 2008
Happy Holidays
Allow me to use my blog to wish everyone a happy holiday season and an excellent year to come. I hope everyone will get what they wish for in 2009 but in my mind nothing is more important than health. As someone once said: when you got health, everything else is gravy? OK, I made this one up myself ;-) but don't you agree?
Think about it, when you are healthy what problem is worth thinking about?
Merry Christmas and happy new year!
Think about it, when you are healthy what problem is worth thinking about?
Merry Christmas and happy new year!
Monday, December 15, 2008
Tomorrow... a Big Day
Tomorrow, Tuesday 16 December
What a coincidence that I have an appointment with Dr. L, my hematologist, the day of the birth of my mother. The meeting is important because I will learn how the doctor wants to manage my allergies. I also have questions to ask on what is coming: 2 treatments according to the original plan but how many more will I receive? How will he assess when to refer me in surgery or in other words what kind of reduction of the tumors does he hope for? What will be the date of my next scan? Can I have a break from chemo for a week during the holidays without jeopardizing the progress achieved? What is the level of my markers, yes! It's been a month.
I am sure that my mother will be there behind my shoulder ... What I am saying? She will be right in his face prepared to give him a slap behind the head if he does not give me the right answer. I can hear her say: You are going to heal my son or else my name is not Raymond.
Note: for those who read this blog without knowing all the details about my family, my mother passed away, I refer to her presence in spirit of course.
Yes ... Tomorrow is a big day.
On another topic, our boys competed over the weekend. They each collected a silver medal. They demionstrated beautiful judo as their father loves it. Flexible, diverse, respectful but with a nice determination without misplaced aggressiveness . In both cases it was close to be a gold medal but Judo is a sport where quick turnaround happens. Moreover Tristan has learned the lesson that "it's not over until it's not over". He was losing his second to last fight when with 10 seconds left he counter attacked and scored the decisive point: Ippon. He was proud to have persevered and thus enabling him to participate in the final. Jordan has shown much progress in his judo groundwork. He has won two fights with his follow through standing-to-ground techniques. Friday will be the last judo session before Christmas. Luc invited parents to step on the tatami mats. Guess what? Marie-Josée has decided that she would participate. In three years it is the first time she agreed to wear the judogi and to battle on the mat with her sons. I am sure she will be pretty sexy in my new competition judogis. I'm will be not quite in shape to join them (three days post chemotherapy), but if I have enough energy at all I will not miss the opportunity to tease my wife on the mat. Of course Élodie dress up and so it will be a real family affair.
Finally, our outdoor Christmas decorations are installed, tree included. It was very cute to see Jordan and Élodie collaborate on the little Christmas village. It began with an argument but finished with a smile. Élodie is at the age when the wonder of Christmas is at its maximum. Hers eyes light up when she talks about the coming of Santa Claus. Jordan, for the first time, participates in the enchantment of her sister by explaining the relevant details as to why we leave biscuits, milk and carrots for Santa Claus and his reindeer and especially why you have to well sleep... because if you are not sleeping Santa Claus does not come ;-) You all know, no? I have to go to bed because tomorrow the appointment is at 8:10, it's early with the traffic on the highway 15.
Good night!
What a coincidence that I have an appointment with Dr. L, my hematologist, the day of the birth of my mother. The meeting is important because I will learn how the doctor wants to manage my allergies. I also have questions to ask on what is coming: 2 treatments according to the original plan but how many more will I receive? How will he assess when to refer me in surgery or in other words what kind of reduction of the tumors does he hope for? What will be the date of my next scan? Can I have a break from chemo for a week during the holidays without jeopardizing the progress achieved? What is the level of my markers, yes! It's been a month.
I am sure that my mother will be there behind my shoulder ... What I am saying? She will be right in his face prepared to give him a slap behind the head if he does not give me the right answer. I can hear her say: You are going to heal my son or else my name is not Raymond.
Note: for those who read this blog without knowing all the details about my family, my mother passed away, I refer to her presence in spirit of course.
Yes ... Tomorrow is a big day.
On another topic, our boys competed over the weekend. They each collected a silver medal. They demionstrated beautiful judo as their father loves it. Flexible, diverse, respectful but with a nice determination without misplaced aggressiveness . In both cases it was close to be a gold medal but Judo is a sport where quick turnaround happens. Moreover Tristan has learned the lesson that "it's not over until it's not over". He was losing his second to last fight when with 10 seconds left he counter attacked and scored the decisive point: Ippon. He was proud to have persevered and thus enabling him to participate in the final. Jordan has shown much progress in his judo groundwork. He has won two fights with his follow through standing-to-ground techniques. Friday will be the last judo session before Christmas. Luc invited parents to step on the tatami mats. Guess what? Marie-Josée has decided that she would participate. In three years it is the first time she agreed to wear the judogi and to battle on the mat with her sons. I am sure she will be pretty sexy in my new competition judogis. I'm will be not quite in shape to join them (three days post chemotherapy), but if I have enough energy at all I will not miss the opportunity to tease my wife on the mat. Of course Élodie dress up and so it will be a real family affair.
Finally, our outdoor Christmas decorations are installed, tree included. It was very cute to see Jordan and Élodie collaborate on the little Christmas village. It began with an argument but finished with a smile. Élodie is at the age when the wonder of Christmas is at its maximum. Hers eyes light up when she talks about the coming of Santa Claus. Jordan, for the first time, participates in the enchantment of her sister by explaining the relevant details as to why we leave biscuits, milk and carrots for Santa Claus and his reindeer and especially why you have to well sleep... because if you are not sleeping Santa Claus does not come ;-) You all know, no? I have to go to bed because tomorrow the appointment is at 8:10, it's early with the traffic on the highway 15.
Good night!
Wednesday, December 10, 2008
It's winter my friends!
I begin this blog by reassuring everyone on my psychological shape. My morale is excellent and no doubts haunts my mind. I hope that everyone feel reassured. I think some believe that my morale is low because of some circumstances in recent days. The past weekend I had invited my two younger brothers to come watch football in high definition on our big screen TV. The same day my step-sister Sandrine had the good idea to confirm that everything was well for the visit. Everything was fine except she told me on the telephone that the PITCHOUNETTE (Clara) had a cold. So I hesitated before taking a decision but I had to resign myself to postpone this visit. Sandrine was wondeful because she left me no doubt that she understood very well my position and that it was not a problem. The reason we have postponed this football afternoon is, as you all know, my immune system is affected by chemotherapy. For me getting a cold means an hospital visit. So as much as I wanted to hang out with my brothers I did not want to catch PITCHOUNETTE's cold. Furthermore if it was not me it could have been one of my children who could have caught this cold, which would have forced me to wear a mask at home for a while and avoid contact with my kids. I hear you say: "Yeah, but your children go to school, they can catch it anyway." Yes, but it is certainly easier to postpone a visit from family then to not send my children to school. We manage risks the best we can. Speaking of my immune system, I'll give you details on the reaction of my body. As I said I had an allergic reaction during the eighth treatment. In the ninth treatment they gave me Benadryl in prevention but I still, at the end of treatment, had an allergic reaction (less powerful than the first but still). This can be problematic or maybe not, we will know next week when we talk to Dr. L. He certainly has several options from which to choose. Discontinuation is not the only one and certainly not desirable. The other element that worries me a bit (I say a bit) is my bleeding nose. Since the eighth treatment I have nasal concerns. My nose is very dry and I get a good congestion during the night. The morning when I'm undisciplined and I blow my nose without preparation, I disturb my nasal walls (I bust a vein) and my nose begins to bleed quite heavily. OK, I have seen other people bleed more than that but for me it is very unusual. After the ninth treatment I began to bleed just because I contacted my abdomen to evacuate my bowels. In addition, compared to the post 8th, this time it took 6 days to calm down. The source of this problem can be multiple and even combined (home drier due to heating, Avastin, low numbers of platelets), but it is certainly something I will discuss with Dr L.
Change of topic, I shoveled the entry yesterday ... twice. The first time it was about 15:30, the children were back from school. They all helped me according to their capacity. Tristan really impressed me. He's only 11 years old but you can feel the teenager, the man growing in him. He showed great strength and determination in the removal of the snow. When Marie-Josee came home around 19:00, it was as if we had not done a thing. This time I decided to try to start the snowblower. Don't you worry I have not exerted any force, it is equipped with an electric starter. So a few strokes of thumb on the siphon, a few strokes of the thumb on the starter and it finally went Zoom Zoom. So I redid the full car path for a second time. I was very proud to have the strength to do it but like any good macho, I was keen on doing my favorite neighbor's entry before he was back from work. I couldn't finish before he arrived. I still helped him a bit since he opted to make his entry with his shovel. I was pleased to give him a hand with my old snowblower. I was so absorbed by the task that I lost sense of time and when I finally got back in my house, it was 22:00. The whole family was in bed.
It is not only the strength that I was glad to have to remove the snow, there is also the fact that I managed to dress in an adequate manner to prevent my fingers and face to sting ( side effect of the chemo). It gave me hope that I can go skiing and do other winter sports as far as I am well dressed. It is not that easy, you know, especially for the nose. It is a problem because I can not completely hide it without suffocating or creating a icy zone on the hood. Still, my combination of polar hood and fur hat with ears worked well last night.
Thank you for your continued readership and have a great day!
Change of topic, I shoveled the entry yesterday ... twice. The first time it was about 15:30, the children were back from school. They all helped me according to their capacity. Tristan really impressed me. He's only 11 years old but you can feel the teenager, the man growing in him. He showed great strength and determination in the removal of the snow. When Marie-Josee came home around 19:00, it was as if we had not done a thing. This time I decided to try to start the snowblower. Don't you worry I have not exerted any force, it is equipped with an electric starter. So a few strokes of thumb on the siphon, a few strokes of the thumb on the starter and it finally went Zoom Zoom. So I redid the full car path for a second time. I was very proud to have the strength to do it but like any good macho, I was keen on doing my favorite neighbor's entry before he was back from work. I couldn't finish before he arrived. I still helped him a bit since he opted to make his entry with his shovel. I was pleased to give him a hand with my old snowblower. I was so absorbed by the task that I lost sense of time and when I finally got back in my house, it was 22:00. The whole family was in bed.
It is not only the strength that I was glad to have to remove the snow, there is also the fact that I managed to dress in an adequate manner to prevent my fingers and face to sting ( side effect of the chemo). It gave me hope that I can go skiing and do other winter sports as far as I am well dressed. It is not that easy, you know, especially for the nose. It is a problem because I can not completely hide it without suffocating or creating a icy zone on the hood. Still, my combination of polar hood and fur hat with ears worked well last night.
Thank you for your continued readership and have a great day!
Wednesday, December 3, 2008
New York
We left home at 7:30 Thursday morning. We arrived at the hotel around 14:30. Overall the trip was very pleasant and seem to go by quickly. I summarize the trip this way: we walked like crazy. So much so that Marie-Josee is considering the weekend as cross-training for her running regime.
We saw what we had planned. Elodie was amazed by the American Girl Place store. M & M and TOYS'R'US struck the minds of our three children. As far as meals go, we made a discovery that we recommend to all. The restaurant Becco is fantastic. Excellent Italian food in a family atmosphere for a price acceptable to downtown New York.
Anecdote: the maitre D at Becco wore a badge saying "Cancer Sucks". I pointed it to MJ and the guy told us that two years ago at age 40 he was diagnosed with stage 4 colorectal cancer with liver metastasis. He has since undergone 9 operations and finished chemo. He could not say more but we connected when I told him that I had the same thing. MJ found the coincidence striking. This restaurant had been referred to us by the hotel concierge.
MJ has managed to find tickets for the show "Lion King", quite a phenomenal show in the management of scenery and animal characters . The giraffes and the hyenas impressed me the most.
For those who are not friends with MJ on Facebook, here are photos of our trip. Click on the image to view the album.
We saw what we had planned. Elodie was amazed by the American Girl Place store. M & M and TOYS'R'US struck the minds of our three children. As far as meals go, we made a discovery that we recommend to all. The restaurant Becco is fantastic. Excellent Italian food in a family atmosphere for a price acceptable to downtown New York.
Anecdote: the maitre D at Becco wore a badge saying "Cancer Sucks". I pointed it to MJ and the guy told us that two years ago at age 40 he was diagnosed with stage 4 colorectal cancer with liver metastasis. He has since undergone 9 operations and finished chemo. He could not say more but we connected when I told him that I had the same thing. MJ found the coincidence striking. This restaurant had been referred to us by the hotel concierge.
MJ has managed to find tickets for the show "Lion King", quite a phenomenal show in the management of scenery and animal characters . The giraffes and the hyenas impressed me the most.
For those who are not friends with MJ on Facebook, here are photos of our trip. Click on the image to view the album.
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| New York |
Chemo... #9
Yes!
I am connected until tomorrow on my 9th chemo. Despite the Benadryl given in prophylaxis (to prevent), I still had a reaction towards the end of the infusion of Oxaliplatin. They injected a dose of Solu-cortef, to control the reaction without putting me to sleep like Benadryl. In my next chemo they will consult Dr. L. to know what to do. They could discontinue oxaliplatin, replace it with another product or use the alternate approach, which means treatment without OXA and treatment with. We'll see. Today fatigue is not so bad even if it is day 2 post-chemo. Perhaps tomorrow I will crash because the effect of Decadron stops.
Again we will see, one day at a time.
Read my next blog which I am writing at the moment on our trip to New York.
Good day to you all!
I am connected until tomorrow on my 9th chemo. Despite the Benadryl given in prophylaxis (to prevent), I still had a reaction towards the end of the infusion of Oxaliplatin. They injected a dose of Solu-cortef, to control the reaction without putting me to sleep like Benadryl. In my next chemo they will consult Dr. L. to know what to do. They could discontinue oxaliplatin, replace it with another product or use the alternate approach, which means treatment without OXA and treatment with. We'll see. Today fatigue is not so bad even if it is day 2 post-chemo. Perhaps tomorrow I will crash because the effect of Decadron stops.
Again we will see, one day at a time.
Read my next blog which I am writing at the moment on our trip to New York.
Good day to you all!
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