They're here!

Tony's parents arrived last night and everyone is in the best of moods... I'm not sure who was most pleased at seeing the other, Tony or his parents. Tony is in good form and has more energy every day. So I'm happy!

Tomorrow we have an appointment with the liver surgeon... we'll find out whether or not the embolization worked. Keep your fingers crossed...

The weekend was busy with basketball. Richard's team did very well. They played four games and only lost one of them. The team that beat them was from Long Island, NY. They were really good. It was a good experience; but exhausting... I'm not cut out to be a taxi driver.

Sandee, I read your post today... Thanks! You are in our thoughts.

Take good care everyone!

Renée

TGIF

Thank God it's Friday! It's been a busy and stressful week. And next week promises to be even busier. But, thankfully, Tony (aka Richard) is feeling relatively well. Of course, he is sleeping the afternoon away and going to bed really early at night; but that's okay. It's part of the deal when you're on chemo. Knock on wood, other than some nausea, so far he hasn't had any really bad side effects.

We're getting ready for Tony's parents' arrival on Sunday. And, Richard is participating in a basketball tournament with his school team. I will be the appointed driver. They play at least 3 games (1 tonight, 2 tomorrow) and could play another 2 on Sunday if they win.

Well, we're off to get the car washed at the Novartis Community Partnership Day Charity Car Wash, so that's it for now.

I wish you all a very good weekend. Enjoy your loved ones... and take good care!

Renée

Keep your fingers crossed

Well, Tony (aka Richard) got his Erbitux this morning. All things considered, it went very well. The risk of adverse reaction is always greater the first time you take a medication. But, so far, so good... We're home and he's had lunch and has just gone to bed for his afternoon nap. I think/hope that the fact that he's off the Xeloda will help in terms of his level of fatigue. Not quite sure what the Erbitux will do... We're told that the most common side effect is skin rashes, etc. As Tony's parents are arriving from Belfast on Sunday, I hope this chemo will be easy on him. Keep you fingers crossed.

I've just had a special request for cheesecake (I guess that's better than poutine)... So off I go to the store! Thank you all for your thoughts and messages. We both appreciate them very much.

Take good care.

Renée

We'll try again tomorrow

Well, today's treatment just wasn't meant to be... We arrived at the hospital at 7:30 am for Tony's blood tests. His results were satisfactory as he was given the green light for treatment at around 8:10 am. It took a while before we were called into the treatment room because his file hadn't yet arrived. Once in the treatment room, it was a question of which drugs he was meant to get. A quick call to our Oncologist confirmed that we should discontinue the Xeloda and that this first treatment would only be the Erbitux and the next ones would be in combination with CPT-11. An i.v. was started and Benedryl was administered. Then everything was stopped. There had been a problem with the refrigerators over the weekend and the pharmacist was waiting for confirmation from BMS that the Erbitux could still be used because it had not been stored at the recommended temperature. At 11:30 , we were sent home.

I just spoke to our Oncologist's assistant and she confirmed that the Erbitux is okay and that Tony can have his treatment tomorrow afternoon. So we'll try again tomorrow. The Erbitux will be administered once a week for six weeks.

In order to reduce the amount of frustration I was feeling (funny enough, Tony was very calm), I thought of my good friend Happie and stopped to admire the clouds. Thanks Happie!

Take good care!

Renée

Another CT Scan

Although there is no amount of studying in the world that could help you get different results, these tests that Tony has to go through (CT, blood, etc.) still make him (and me) nervous. So much is riding on them, and yet you're just a passenger along for the ride. No control whatsoever. This morning we went to the Vic for a CT scan and blood test. They will tell us whether or not the embolization was a success or not. Unfortunately, we have to wait until next week to get the word from the surgeon. So we'll just have to hurry up and wait; once again.

I must take my hat off to our Oncologist. In a bit of a panic on Saturday night, I wrote him an e-mail. Tony had a fever of 38.3 during the evening so I gave him so Tylenol. Then, I started thinking... (not always a good thing for me!) When patients are on chemo, they usually tell them to go directly to the emergency if they get a fever of 38.5. Well, believe it or not, when I checked my e-mail on Sunday, I realized that our doc had responded to me sometime around 11 pm on Saturday night (bit of a workaholic- but good for us). He said that if the fever persists to go to the ER and d/c (which I take to mean discontinue) chemo. Thankfully, Tony's temperature only went up to 38.1 on Sunday. However, as he had to fast for 12 hours for his blood test Tony opted to skip last night's dose as well as this morning's. He gets really sick on an empty stomach. Because he will be starting another chemo tomorrow, he will most likely stay off the Xeloda until we see the nurse or oncologist tomorrow. In the meantime, I hope and pray that his temperature will not spike again.

I wanted to say THANKS! to my Mom and Dad for the beautiful flowers. They did bring a smile to my face... Also, thanks to everyone for their comments. Stéphanie and Maureen, our thoughts are with you and your family...

Take good care everyone!

Renée

Knowledge is a powerful thing

In March 2006, just before we left for Cuba, my good friend and colleague, Linda, gave me a wonderful gift - the following article was her gift to me (along with some sunscreen)... I thought I would share this with you so that you might get a better understanding of this dreaded disease and how wonderful a husband I have. Thanks Linda! And dont' worry - I never thought for a moment that you weren't supportive. I actually realize how neurotic I can get. Thanks again... and keep writing!

KNOWLEDGE IS A POWERFUL THING (by Linda Thompson)
March is National Colorectal Cancer Awareness Month in Canada and this year I know more about the disease than Iever dreamed I would. For example, I know that colorectal cancer is the third most common cancer in the country [i]. I also know it's very treatable if detected early, yet it’s the second leading cause of death from cancer [ii] in Canada. I know these things because just over a year ago my friend and colleague, Renée, began to voice fears about her 38-year old husband having colorectal cancer.

I didn’t really take her seriously in the beginning because Renée is one of those people who can’t help giving herself a good medical scare. She loves to pour over medical literature, yet she’s the first to admit that she shouldn’t be allowed within miles of a medical textbook. Internet medical information sites should also be permanently blocked on her computer. That’s because, in her case, a little knowledge can be a dangerous thing. No sooner does she read up on a disease than she or someone in her family suddenly exhibits the symptoms. I, on the other hand, am the total opposite. The less I know about any number of diseases that could be lying in wait to attack, the happier I am. Somewhere between the two of us of there’s a happy, healthy medium.

So when Renée began to talk about the possibility of her husband, Tony, having colorectal cancer, I scoffed at the suggestion. I pooh-poohed her concerns and repeatedly told her that it was highly unlikely. My goal was to reassure her, but I don’t think I did a very good job. I probably didn’t come across as entirely sympathetic either, since I was sure her imagination was working overtime again. Other than making frequent trips to the washroom (it’s amazing how close colleagues share the most intimate family details), Tony had no symptoms whatsoever. He was as strong as a horse, hadn’t lost an ounce of weight and had a hearty appetite. And after all, colorectal cancer at 38 years old, well, what were the odds? In retrospect, I know I wasn’t as supportive as I could have been and I have regretted it ever since.

As it turns out,Tony was diagnosed with colorectal cancer in December of 2004 despite the fact that none of the high risk factors for the disease applied to him. These factors include a family history of colorectal cancer, inflammatory bowel disease or a previous removal of a polyp or tumour. Risk also increases with age, and people over age 50 are at a higher risk. But, as Tony discovered, cancer doesn't follow any set rules or always pay attention to risk factors.

Since then, he has undergone three surgeries and two rounds of chemotherapy. The first operation to remove his colon revealed metastases to the liver. He had to go under the knife two more times to completely erase the tumours from his liver, and is now waiting for a final round of chemotherapy. Through it all, he has maintained a hugely positive attitude and an impressive sense of humour. And through it all, Renée's extensive reading and research has been a great asset. Her knowledge has put them in the driver’s seat when it came to treatment options and choices instead of being passengers along for the ride. The information obtained from Tony’s doctors, patient groups, medical literature and other sources allowed them to evaluate and choose the best course of action for Tony’s circumstances. Now both she and Tony are putting that knowledge to good use. Together they are promoting awareness about the screening, detection and treatment of colorectal cancer among their circle of friends, family and acquaintances. Family members in particular are now sensitive to the fact that there is a history of the disease in the family. As well, several of his colleagues have undergone screening as a result of Tony’s story.

So, thanks to Renée, I know a lot more about colorectal cancer than I did just over a year ago. I know that an average of 377 Canadians will be diagnosed with colorectal cancer every week [iii]. I know that one in 14 men and one in 16 women is expected to develop colorectal cancer during their lifetime [iv]. I know that colorectal cancer can develop overtime with no signs or symptoms and that an average of 162 Canadians will die from it every week. The most valuable thing I’ve learned is that wide screening could significantly reduce this death rate [v]. And thanks to Renée, I’ve learned that knowledge is power, and that this information could just possibly save my life.

[i] Canadian Cancer Society/National Cancer Institute of Canada: Canadian Cancer Statistics 2005
[ii] Canadian Cancer Society,www.bc.cancer.ca/ccs/internet/standard/0,3182,3278_14447_371429_langId-en,00.html[iii] http://www.bc.cancer.ca/ccs/internet/standard/0,3182,3278_14447_371429_langId-en,00.html
[v] http://www.bc.cancer.ca/ccs/internet/standard/0,3182,3278_14447_371429_langId-en,00.html

UPDATE: Since Linda wrote this article, Tony (aka Richard), has undergone two more procedures for his liver: radiofrequency thermal ablation and embolization. As well, he completed an additional two chemo regimens and is now on his third - so fifth in total. Unfortunately, the liver metastases have progressed in spite of the last chemo (which ended in Jan 07). We are hoping that the embolization and this new chemo treatment will be effective in shrinking these tumours.

NOTE: Tony's cancer is attributable to Gardner's Syndrome, a variant of familial adenomatous polyposis (FAP). Approximately 1% of all colorectal cancer cases are attributable to FAP close to one third of these have no family history of the disease.

I apologize for the long post... but thought it was well worth it.

Sick and tired of being sick and tired

Tony is quite tired; and having a hard time accepting it. The chemo, the thing that can make him better, is making him very tired. He was up two hours between breakfast and lunch and had to go to bed. He was up for one or two hours when Mathieu came home from school but had to go back to bed. He is out of bed for maybe six hours a day. It's a vicious circle. How much rest is too much rest? How far should he push himself? Cancer and chemo - particularly - make you a different person physical. While everything else about you remains the same; your body is unable to do what it did before or what you would like... It's not always easy. But he's a fighter and while the tiredness is getting to him, he is, in spite of it all, quite positive.

Let the sunshine in...

What a beautiful day! Its amazing the difference a bit of sun can have on a person. This morning Tony (aka Richard) and I went a short walk around the block. It was really nice! We also sat outside for a while and just took in some fresh air. It really does give you a boost. Don't get me wrong... we're not ready for a marathon yet; but being outside does make you feel alive, doesn't it? (By the way, that's a photo of the tree in the backyard - the one from where the squirrels attack us with acorns in the summer.)

We're booked for chemo at the JGH on Tuesday morning (early). Monday is the CT scan to see if the embolization was successful. Keep your fingers crossed!

I hope you all get a chance to enjoy the sunshine! Take good care!

Renée

P.S. Please don't be afraid to call the house. This blog is not meant to replace the wonderful live conversations Tony and I been known to have with you wonderful people.

It's a "GO!" for Erbitux

Well, our Oncologist called us back at around 7 p.m. last night. The good news he wanted to share is that Tony (aka Richard) was approved for Erbitux through the Special Access Programme. Erbitux has shown good results... So here we go! Now, getting an appointment for treatment is a different story. Our Doc wanted us in tomorrow, Thursday. But, the head nurse says, "No can do!". It looks like its gonna be Tuesday. Tony will keep taking the Xeloda (oral chemo) for now and will have to go to the hospital for the Erbitux as it is given by infusion. That's a bit of a down side. Tony was hoping not to have to go back to the hospital for chemo infusions... ('cause he really really hates it!) ...but what can you do? If it can make him better he's willing to give it a try. Hopefully the side effects will be minimal.

We really appreciate everyone's comments. I think Tony was quite surprised at the responses we are getting. Thanks everyone.

Renée

Cabin fever...

Cabin fever was the word of the day for today... Well, I guess it's better than plain old "fever" fever! The remedy for this was lunch out at the restaurant and a quick visit with friends we hadn't seen in a long time. Of course, Tony's off for a nap after all the excitement... But I think it was the best thing for him. Being house-bound for so long, with the weather being what it is, anyone would get depressed; never mind a guy who's been fighting cancer for 27 months.

This is a photo I took of Tony as we were heading out today. Now, that's the healthiest looking sick guy I've ever seen... Doesn't he look great?!!

We have good news today, although I'm not quite sure what it is yet. But the Oncologist left us a phone message that he had good news and to "please call him on his cell". Of course I can't reach him right now... But, apparently he has good news!! "Yeah!" We could definitely use some of that right about now.

I will keep you posted! 'Til then, take good care!

Renée

Spring, you say...

Everyone here is doing well. We had a very bad night on Friday. I went to bed late and Tony awoke with a fever and pain on his side that just wouldn't go away. It was painful for him to breath when he was laying down. We tried different pain medications throughout the night (Codeine, Dilaudid, Oxycodone), without much success. On Saturday, Tony decided to give the anti-inflammatories another try - along with the codeine. I don't know whether if that's what did the trick... but so far so good. So maybe his pain was due to desmoid tumours - we might never know for sure... Ah!, the pleasures of living with cancer.

On a good note, Tony is up and around for longer periods of time and his appetite is increasing - he actually had a craving for poutine yesterday. He finished his antibiotics for his abscess - which means he can now indulge himself with chocolate and other milk products... He will be restarting the Xeloda on Wednesday. Hopefully, he will not have any nasty side effects.

Again, thanks for all your comments... they are very appreciated.

Take good care and we'll see you soon!

Renée

Friday the 13th...

Can you believe we took this photo on April 12th? Well things are good today. Other than the fact that it's Friday, Tony hasn't had a fever in over 24h... so we're optimistic.

I spoke to the Oncologist's secretary yesterday; she is so nice. Tony will resume his Xeloda treatment on the 18th and we'll be seeing the Oncologist on May 7th. He will try to get him on Erbitux. Apparently the makers of this drug were given so much run around for the approval of this product in Canada, that they withdrew their application. This means, of course that the product is not readily available to patients in Canada. In order to be able to get it, our Oncologist has to put in a special request as the product in only available through a Special Access Programme. Not much is new other than that...

Tony (aka Richard) and I wanted to thank everyone for the positive response to this blog. You don't realize it on a day-to-day basis, but when you stop to think of it, we are quite secluded and this blog gives us a chance to get closer to all of you - in a different way. Keep the comments coming,... they're quite uplifting.

Have a great weekend... And take good care!

Tony (aka Richard) & Renee

One day at a time - day one

I thought if I could post some updates for the many people who often call (or are afraid to call for fear of disturbing us), it would be both helpful and therapeutic. So here goes...

As most of you know, although he had been having bursts of fever for well over two weeks, Tony had his liver embolization on Fri. Mar.30th. He spent the better part of the week in bed and had fever and pain as was expected. On April 6th we visited our Oncologist who gave Tony a prescription for an oral chemotherapy treatment - Xeloda.

Tony started his chemo on Sat. Apr. 7th - he was still having some fever... On Sunday, he was in some discomfort (backside) and could barely sit. On Monday I took him to a local clinic that was open - all hospital clinics were closed as it was Easter Monday. We were told it was an abscess and that it would need to be drained and gave us antibiotics. We were at the colorectal surgeon's on Wed. and things are better now... Knock on wood. He hasn't had a fever since yesterday afternoon. Although I keep feeling his forehead every 2 hours or so. (That must be annoying for him...) On the down side, he has to be off his chemo treatment for 7 days. I'm waiting to hear from the Oncologist as we did 4 days of a 14 day (+ 7 days off) cycle... I'm not sure how that'll work. We were meant to see him next week; but I'm not sure if that'll hold.

For now, Tony is eating well and getting plenty of rest.

On a happy note, my youngest son Mathieu's team won a hockey tournament this weekend (the final was at dinnertime on Sunday - what timing). And, on Tuesday, my oldest, Richard, turned 13.

Take good care everyone... We'll see you soon!