"One day at a time" - TAKE TWO

I really have to work hard to remember that life is best lived "one day at a time". Anything more can be quite overwhelming. Well, today was not at all what we expected... The distended abdomen is not caused by ascites; as we found out when the oncologist did a paracentesis. There was no liquid to drain. The ultrasound that followed only confirmed this. What, then, is causing this swollen belly? Well, your guess is as good as mine.

For the time being, we are looking at controlling the pain so that Tony will hopefully be able to stay up for more than 5 minutes at a time. He has been in bed for more than 22 hours a day in recent days because sitting or standing is too uncomfortable; even eating has been causing him pain. What makes this a bit scary is that to control the pain Tony was prescribed MORPHINE. If it can improve Tony's (and our family's) qualify of life, I say "get over it - and - bring it on!". There is no need to live with pain. I (and Tony, I think), just have to get over the fact that it's "MORPHINE".

On a positive note, we ran into Dawn, a former colleague of Tony's, at the hospital today. She and her husband stopped by to chat when they realised Tony was in for treatment. Dawn is also a cancer patient and has lived - I'm sure - through her own hell because of this disease. I must say that today, she looked SO GOOD; and healthy! We hadn't seen her in months and it's like she's got a new lease on life! Very uplifting thing to see at a time when we were both feeling pretty down... Thanks for coming by to see us!

Mathieu had a soccer game tonight, and I wouldn't be much of a mother if I didn't brag that my goalie son got a shut-out! They won by a score of 2-0. Félicitations Mathieu!

That's it for now! Please send positive fibes our way....

Take good care!

Renée

Cancer sucks : (

Well, the Lasix had minimal effect on the swelling (ascites). Tony's abdomen is still quite distended and painful. It keeps him in bed most of the day. He gets up to eat, but eating causes him some pain... I spoke to his nurse today and she'll have the treatment room oncologist have a look at him tomorrow. Hopefully, he'll do a paracentesis as - apparently - this is the one thing that would help reduce the swelling and make him more comfortable. Also, it would be good if they could minimize the excess fluid before they inject the chemo... Because, tomorrow is chemo day!

I stopped by work today... It was really nice to see friendly faces... Sorry I couldn't get around to seeing everyone, but I had to pick up the boys. Richard didn't go to football tonight because his thumb hurt too much. He injured it at practice on Monday. I took him to a local clinic after dinner to make sure it isn't broken. Unfortunately, by the time we saw the doctor, the x-ray clinic was closed.

That's it for now... Let's hope that tomorrow brings Tony some relief.


Take good care everyone!


Renée

Looking for the sun through the clouds

Today, Tony had an appointment with his oncologist. His Doctor suspects that the abdominal pain and swelling might be ascites. He has prescribed a diuretic, Lasix, (along with potassium pills) and ordered an abdominal ultrasound - which is scheduled for next week. Tony took his first dose of Lasix tonight... and hopefully, we will see some improvement tomorrow. A good night's sleep would also be very welcomed.

The blood tests showed that his liver function and tumour marker (CEA) levels remain very high. The oncologist said that the tumour marker is not reliable because of the damage the liver suffered with the embolization. He will rely on the CT-scan to evaluate the efficacy of the current treatment. The CT-scan is scheduled for mid-June.

On a good note, the good Doc sees no reason why we cannot have family vacation this summer. So, I will have to get on that and try to reserve something decent. It will be nice to have something pleasant to look forward to. Tomorrow, I will attempt to have the A/C in car repaired... Apparently the mercury will be rising to uncomfortable levels again in the coming days.

Well, that's it for now. I have to go wash the dishes... now that my helpers have left :(

Take good care!

Renée

...we all fall down...

There's a story behind this photo... It involves a photographer, two ladies and a broken lawn chair. Need I say more. Michele, Jean or I can tell you the whole story if you're interested. Anyhow, I promised Jean (Tony's mum) that I would post a photo of us... so here it is.

Tony was quite tired today, but managed to BBQ hot dogs for our lunch and got up and BBQ'd the steaks for our dinner. I think he just didn't trust me with all that meat... Unfortunately, he was back in bed before we could finish our dinner.

It was a beautiful day! And a wonderful evening. After a wonderful BBQ dinner, our friends Deb & Gary stopped to say bye to Jean and Richard and we had a nice evening out on the back deck.

Hoping tomorrow's "goodbyes" aren't too difficult... That's it for now.

Take good care.

Renée

Another hot one...

It was hot again today and, unfortunately, they couldn't fix the A/C in the car by end of business day. I'll have to take it back next week. Luckily, the temperature is supposed to drop slightly over the weekend and should be more comfortable.

As was the case last week, Tony did not sleep at all last night. He did rest quite a bit during the day, but I'm not sure how much sleep he actually got... Hopefully, tonight will be good.

Mathieu had a soccer practice tonight. Richard skipped his football because of a headache and went with Mathieu to his practice where he met his friend. Both Mathieu and Richard are sleeping at their friend's house tonight (the friends are brothers; their mom's got her hands full), so it's quiet around here. We might even get to sleep in!

That's it for now... Have a wonderful weekend!

Take good care!

Renée

Five down...

It was chemo day today. And, surprise, surprise, Tony received both the Erbitux and the CPT-11. We thought the CPT-11 combo was meant to be administered every 3 weeks; but not. It's every 2 weeks apparently. We also found out that the stomach/abdominal pain is a side effect of the CPT-11; and not the Erbitux. So, once again, please everyone, keep your fingers crossed...


Luckily everything at the hospital was quick and on time today. Which is good, as we weren't expecting the extra 1.5 hour of infusion. Tony was feeling okay afterwards; except for the fact that the A/C in the car was on the fritz again! It was HOT on the way home (temps in Montreal were well over 30 C today) !!!

Jean and Richard (Tony's parents) took us all out for dinner tonight. It was really nice; and the restaurant was air conditioned... Cool!! I'll be getting the A/C in the car fixed tomorrow; and the installation at home is scheduled for June 6th - YEAH!!!!

Well, that's it for now. Hopefully we'll all get a good night's sleep tonight!


Take good care!


Renée

P.S. Thanks for all your comments... Keep them coming; its uplifting to know people care!

A/C is on the way...

Today was quite busy. A sales rep came this morning and we signed on to have air conditioning installed. I think we'll need it. The temperature is going up to 31 C tomorrow! And it's not even June yet...

This afternoon, we were at the vascular lab for a check-up. Tony (aka Richard) had a blod clot in his left shoulder/arm last May and had been getting his chemo infusion in his right arm only (which has been getting more difficult with time). Well, he got the all clear today, so it might make tomorrow's treatment (or at least the hook up) a bit easier.

Tony's nurse was away today, so I spoke to another nurse regarding his abdominal pain. We are waiting for a nutritionist to call us back with "do's & don't's". I guess we can talk to her in person tomorrow as we will be there for Tony's treatment.

After I picked up the boys this afternoon, I quickly BBQ'd some burgers and Richard and I were off for his football try-outs. I was back just in time for the last half of the American Idol final. Tony was glad I was back because he had been for a walk and couldn't wait to go to bed and didn't want to bed before Mathieu was back from the park. (My in-laws were "kidnapped" by my neighbours done the road; who had them in for a cup of tea.)

Tony actually said he felt like he did have a bit more energy today... Unfortunately, tomorrow is chemo day already. So, here we go again.

Keep your fingers crossed for an easy treatment with few after effects...

That's it for now.

Take good care!

Renée

Tuesday with Mathieu

Mathieu had a P.D. day today - no school - so I didn't have to get up quite as early. That was good : ) Tony and I actually each took a turn at the stationary bike this morning. I was glad to hear Tony say that it was good... I think we might be on to something...


Tony took a walk this morning and a nap in the afternoon. After an early dinner we both took Mathieu to his football try-outs (American football, that is). It was a bit long I'm afraid. Tony has been having abdominal/stomach pain every time he eats. And, the discomfort sort of creeped up as soon as Mathieu's practice started. Stomach pain is mentioned as one of the side effects of Erbitux, however, we will call to the nurse about it tomorrow. It is getting quite uncomfortable; and Tony's not one to complain... As for the fatigue, it is still there, but he is fighting it.


Richard and Jean (Tony's parents) were back from Huguette's (Tony's aunt) when we got back from football. I can't believe this is their last week already : ( Where does the time go?


Well, that's it for now... Thanks to everyone for your wonderful support.


Take good care!


Renée

Difficult weekend

I'll be honest with you... it's been a difficult weekend. My lack of sleep and slight hormonal imbalance, mixed in with Mathieu's boredom (his friends were away) and general crankiness (from lack of sleep) together with Tony's total fatigue and general feeling of being unwell, have made this weekend quite depressing. (Our son Richard was away.)

That said, things are looking better tonight. Tony has been trying so hard to get out for walks so as to break the vicious circle of fatigue and lack of energy. However, he hasn't been having much success. Every time he takes a walk he has to go for a nap because he's exhausted. How far should he push himself? They say chemo patients should listen to their body, etc. But tonight... Tony asked me to help get him out of his "rut". And maybe, just maybe, that's just what I needed to get out of my own "rut".

We all went out to watch Richard play his first soccer game of the season (he scored 3 goals), and I think we all felt better for that brief interlude of normalcy. It's very difficult not to look back and think about how things used to be... and not feel sorry for all that can no longer be... for now, at least. But, if we are to get through this with our sanity intact, then we have to stop comparing today to yesterday and just appreciate what we have NOW. Hopefully, I will be up to the task.

Well, I hope I haven't been too depressing... But I am feeling much better - thank you! I hope you all had a great weekend...

Take good care!

Renée

This weather is ... for the ducks

I went for walk today and met this duck... We were the only ones out on this grey and rainy day. I'm afraid my Mallard friend was a bit camera-shy...

Tony (aka Richard) had his chemo today. He was only being administered the Erbitux, so it was a lot quicker than last week. Our nurse, Veronique, was very helpful and encouraging. She spoke to us about exercising and setting realistic goals. Baby steps; and one day at a time... Somehow, the clouds didn't seem quite as dark on our way home.

Tony was feeling relatively well tonight (knock on wood) and stayed up with us for a while. Hopefully, the sun will come out tomorrow and help brighten our day.
That's it for now. I wish you all a wonderful long weekend!

Take good care!
Renée

Another grey and rainy day

If this weather keeps up, I'll be broke in no time... There's only so much therapy a wallet can take. On a positive note, though, the grass is very green and the trees and flowers are blooming.

Tomorrow is chemo day - again. So today was one of those limbo days. Tony and his Dad kept busy all morning assembling the stationary bike I bought. That, in and of itself, was quite a workout. Tony slept most of the afternoon and was up briefly for his dinner before he had to go back to bed. There's not much anyone can do or say the night before chemo... I can't even imagine what it must be like for him. We can only hope that this treatment is working. Keep your fingers crossed that tomorrow will be an easy one!

Maureen & Pierre, it was really nice to hear from you. Everyone at work, I miss you.

That's it for now... Take good care!

Renée

Rain, rain go away

Today was a rainy day. The grey skies did nothing to lift my mood; so I tried a bit of shopping therapy. I went to enquire about air conditioning. I really think Tony (aka Richard) - and I - will need it. I'm afraid I haven't quite managed to convince Tony yet, but I have until next Wednesday; that's when the salesman is coming to give us a quote...

Tony had a good morning and took a walk. He did sleep most of the afternoon (as did I) and had to go back to bed again before dinner. He was up a bit after our late dinner and had another short walk but couldn't stay up through American Idol. I think we'll have to try a new approach to eating; i.e. eating like a pregnant woman (NO, I'm not pregnant). By that, I mean, we'll have to try having smaller portions more but eating more often. It think it might make Tony's digestion more comfortable.

Linda, you asked about the fever... It does usually strike around 6 p.m. most nights. However, if it's below 38.0 C (100 F), I tend not to worry as much. 38.5 C is the dreaded number; if he gets that high, we have to go to the ER. But, we seem to be okay for now. Knock on wood.

Well folks, that's all for now. Take good care!

Renée

Difficult weekend

It's been a difficult weekend. After an amazing Friday, when Tony (aka Richard) stayed up most of the day and almost felt normal; the reality came back like a sucker punch on Saturday. Because Tony was feeling good Friday we decided to chance it and invite my Mom and sister up from Ottawa to come say "Hello!" to Jean and Richard (Tony's parents). I knew my sister's spouse, Greg, would have no objections to being the official Bar-B-Q'er. He's a real pro at it! Unfortunately, Tony's fatigue came back full force and he could only stay up for a short while to eat and that was it.

While we don't like to see him that tired, everyone understands the situation. I think he was the one who felt most disappointed. And, that is what is most difficult for everyone around - realising how much this disease has taken away from him and us. To make matters worse, the children had a major blow up late Saturday night; which made me wonder how we will ever get through this with our sanity intact. - ONE DAY AT A TIME - I have to keep reminding myself...

Tonight, Tony was depressed and wondering if he will ever get his strength back. He took two small walks (to the end of the street) today; but had to go to bed as soon as he came back in. The doctor had suggested exercise might give him more energy... but we're not there yet! As I told Tony, after he told me he only wants a normal summer - I think we will have to reinvent normal.

Sorry for rambling on... I hope you all had a wonderful Mother's Day. Musn't forget to mention that Richard attended the Jr Alouettes Football Camp this weekend and was voted most improved "wide receiver" (I believe). Congrats Rich! Luv ya!

That's it for now! Take good care!

Renée

Chemo day

Today was chemo day and, although we had expected the worst, it wasn't all that bad. Of course, there were the usual delays; i.e. we had to wait over an hour for the pharmacy to have Tony's drugs ready. He had an appointment for his chemo, but somehow the pharmacy just wasn't prepared for him today... Thankfully, Tony got through his treatment without too much discomfort. He even stayed up a few hours when we got home. (I won't go on about it too much, for fear that I will jinx it.)

I got good news from my Dad today. He got the results from his CT-scan and apparently his aneurysm is stable; large but stable (approx. 5.1). His surgeon wants to see him for follow-up in 6 months. One less thing to worry about - no surgery for now!

I'm sure glad the weekend is almost here; I don't need to wake up as early.

I was really happy to hear from my friend Susan P. and pleasantly surprised to hear from Rheal. Nikki, Anne & Brian, and Tom & Amy I have passed on your messages to Jean and Richard. Thank you for keeping in touch everyone.

That's it for now! Take good care!

Renée

Here we go again

Today was fairly similar to yesterday, except that it was much warmer (27 or so). Today again, around 6 pm - what I like to refer to as "the witching hour" - Tony's temperature spiked (38). Nonetheless, Tony managed stay up a bit and even squeezed in a short walk.

On our last visit the Oncologist told us that studies have shown a greater survival among cancer patient who keep physically active. So, yesterday I went out and bought a stationery bike. I suppose I'll have to make a go at it myself...

Tomorrow is chemo day... Here we go again! We're back at the JGH for Tony's third treatment. This time he'll be getting Erbitux and CPT-11. Hopefully, the side effects will not get any worse. Keep your fingers crossed.

That's it for now. Take good care!

Renée

Where do the days go?

I was so busy today; yet I feel like I didn't get much accomplished. Does that happen to you too? Well, I did manage to purchase the replacement canvas for our gazebo. Very important since Tony (aka Richard) has to stay out of the sun. My father-in-law brought out our deck table and chairs - so we're ready for summer. And it felt like summer today!

Tony is still very tired. Getting up in short spurts - mostly to eat. He had a bit of a fever again today... I guess there's not much to do about that, except to give him Tylenol. Of course, if it goes as high as 38.5, I will have to take him to emergency. But, I think we're okay for now... We'll just have to wait and see what tomorrow brings.

Take good care!

Renée

More of the same...

We were back at the JGH today. And it was a longer visit than anticipated. I wish there was a way to make the health-system more user-friendly, more compassionate. Well, enough of my ramblings...

We saw the Oncologist today and he told us that the blood cultures were all normal. He noted that Tony's fever is most probably due to his tumours. As for the increasing discomfort Tony is feeling because of the rash (brought on by his chemo), we were referred to the Dermatology clinic. I basically had to resort to tears, but the Dermatologist agreed to see Tony today. It was today, or at the end of June! After his chemo is completed. Tony would've much rather go home and go to bed, but I managed to convince him that staying might be worthwhile. Let's hope the pills work their magic!

Tony is still very fatigued. He went to bed and slept all afternoon. He got up for an hour at dinner time and had to go back to bed. I really hope it gets better soon and that he is able to enjoy a bit of Spring. These weekly treatments are really difficult on him and the whole family! I know this must be very difficult on my in-laws. Thank God they're strong.

Well, luckily, today was nice and sunny! I must confess, though, that I forgot to stop and admire the clouds. I'll have to make an extra effort tomorrow.

Luke, I hope you had a very happy birthday!

That's it for now... Take good care!

Renée

Alouettes, gentils Alouettes...

That's my baby... somewhere there. And, yes! that's how I spent my weekend - at the Junior Alouettes' Football Camp (American football, that is). Richard will be attending with the older boys' camp next weekend. The weather was just wonderful and the organizers and the professional football players involved were just amazing with the kids.

Unfortunately, Tony (aka Richard) was just too exhausted to attend. His rash is becoming quite uncomfortable and he did have a bit of a fever (38.0) this afternoon. We are seeing the Oncologist tomorrow morning, so maybe he can prescribe something for the rash; I've just been giving him Benedryl... We should also have some news on the blood cultures they did last Thursday. Keep your fingers crossed.

That's it for now. Take good care!

Renée

Patient be patient

We were back the the JGH today for Tony's second Erbitux treatment. We were there early (15 min.) as Tony likes to be. However, once his blood tests were done and the results were in, we had to wait because there were no available chairs. When he finally got hooked up, the nurse took his vitals and found that he had a slight fever (38.4). The oncologist had to be called and they drew some more blood for cultures. And, repeated the cultures again 30 minutes later. And then we had to wait some more for the Erbitux... Patients really have to have a lot of patience. We got to the hospital at 11:45 thinking we'd home no later than 3:00... and we got home at 5:00.

On a positive note, our nurse said that with Erbitux, from what they've experienced, the bigger the rash the better the results. So I'm happy Tony's breaking out. Somehow, that doesn't sound quite right... but you know what I mean! (I hope...)

Kim and Heather thanks for thinking of us... Hope to see you soon. Cyn and Ken it was great seeing you last weekend. Michele, if you read this... Have a great weekend in Dublin!

That's it for now... Take good care!

Renée

All is well... and clean

I did my tour of the MGH and the Children's today... and all is well with both Tony and Mathieu. Mathieu probably won't have a scope 'til the fall (or later). Things are tensing up a bit around here as tomorrow is the dreaded chemo day. I thought Tony would be getting the CPT-11 along with the Erbitux tomorrow; but that won't be until the 3rd treatment (next week). So far the side effects haven't been too too bad (I guess that's easy for me to say... I'm not the one dealing with them). Tony's had to deal with the usual chemo fatigue and nausea as well as a rash which they had warned us about with the Erbitux. He is still having a bit of pain on his side from the tumours in his ribs, but, luckily, he can control that pain with codeine. So, we'll keep our fingers crossed for tomorrow; and hope that it's an easy one.

I must say thanks to Jean and Richard (my in-laws)! I don't think our house has been this clean since the last time they were here. All the laundry has been done (we've had good drying days), there's never a dirty dish in the house and Richard even cleaned the windows inside and out... It's just great!

Well off I go to get myself ready for American Idol (I know... but I'm addicted). A special hello to all my friends at Novartis - I miss you all! Thanks for the message Claudia!

Take good care everyone!

Renée

Cautiously optimistic...

Well, Spring is here... and with it comes HOPE! - AND GOOD NEWS!! The embolization seems to have worked - it has produced a lot of dead tumor cells... That's good news. To tell you the truth, because we've never really had good news in the last two and a half years, we told ourselves that if there was no progression, that would be great. We weren't disappointed. Tony's tumour marker (CEA level) went down 300 points after the (hepatic artery) embolization. Of course, we are caustiously optimistic because his tumour marker nearly tripled between the end of January to the end of March; going from 805 to 2349. There is still a lot of disease left, but we are moving in the right direction. As well, his surgeon seemed very pleased that Tony is getting Erbitux. He said all the members of the Tumour Board cheered when they heard that the SAP application had been approved. That can only be good, right? Tony will be scheduled for another CT-scan and tumour marker test in 6 weeks time (after this round of Erbitux). At that point they will re-evaluate and decide on next steps.

So for tonight, it's all good. Hopefully our visits to the colorectal surgeon and Mathieu's gastroenterologist tomorrow will also be cause for optimism... Keep your fingers crossed.

And, take good care!

Renée