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

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.

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!

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.

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.

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.

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.

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.

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.