As some may know I have been having some rough times with an intestinal blockage over the past few months. One minute I'm puffed up with a belly as hard as a rock, the next it has gone down and is much softer.
So I met with my Oncologist today -funny how those meetings are always fraught with tension- and with good reason too. In my mind the idea of the visit was to see what he thinks about what could be done with the blockage, and, find out the status of things after a CT Scan I had yesterday. The visit didn't go quite as I had mapped out in my mind.
Turns out the chemo I was on last (third one this year) had no effect whatsoever on the tumour. Actually it has been growing and spreading. He thinks from the scan that I don't have a blockage, though not sure I buy that since it was definitely there in May. But there we are. There are no further chemo options, apart from going for a phase 1 trial. The odds of getting on one and it working are extremely low. And they take a lot of effort getting into the city 2 or 3 times per week, if I qualify, which the doctor thought was unlikely. I don't have the stamina for that.
So I have decided to let things take their own course from hereon. The prognosis is that I have "several months to go, but not a year".
It's funny how you start to think about things when you know there is an end coming soon. You think about family, the caregivers and good friends and how they they have this to deal with, both before and afterwards. I read a something some time ago, and it goes like this:
We call the people who have lost their parents, orphans; and a widow or widower, the person who has lost their spouse.
But what of those people who have known the immense sadness of losing a loved companion or friend, what do we call them?
I am very lucky to have caring people around me. My son, Dominic, visits me quite regularly from Chicago, and of course Sue is my constant companion -don't know what I would do without her. And I have many friends who I see,text or email quite regularly. I'm lucky in that regard.
Depending upon how I fair, I hope to blog again.
Be well to All,
Chris
Thursday, October 18, 2012
Wednesday, July 11, 2012
Something Is in The Way
So I almost finished the first part of the radiation and then I find myself so bloated in the upper abdomen -you would have sworn I had twins in there. Turns out the tumour is partially blocking the small intestine and I am backed up something fierce. Sloan decide to admit me for 8 days, and proceed to starve me for 7 of them with no water or food -like I need the weight loss. Brilliant. I am discharged and told to go on a low fibre diet.
What the bloody hell does that mean? Well, you soon find out it means you cant eat much of anything that's tasty. Very few veggies, green beans, asparagus -tips only, carrots, white spuds -no skin and beets. And that's it, and to make it worse, everything has to be overcooked like mushy veggies and cremated meat. And here we are in the summer with all the fresh veggies and salad stuffs that I cant have. Very few fresh fruits and no skin under any circumstances. Such a bugger. And of course Sue and I love to eat out, and we still do, but it does make it tough at times figuring out what I can eat off the menu. Surprising how many restaurants will not make changes to accommodate dietary needs. Stuck up snobs.
I never finished the radiation therapy because I ended up in hospital. So after I'm out I go and the oncologist in the city. He comes up with another chemo drug to try -we're scraping the bottom of the barrel now. So I just finished the second cycle of a 4 weeks cycle. Also went to see the radiology doctor to see if she could figure out a way to get me some radiation to help shrink back the tumour more quickly. She took a scan but alas she thinks there is no way to get to the tumour without impacting the intestine, and the bladder has had all the radiation it can take. Unfortunately that looks like a dead end. So I am hoping the current chemo drug is working -low percentage of 10% effectiveness though. But maybe I am the one out of ten. Should find out in 3 or 4 weeks.
Meanwhile I am getting a bit more used to the diet, but it's still tough when I see people eating things like clams and oysters (oh yum) at the raw bar -makes my mouth water, literally. If the chemo is working, then I should be able to go back to a more normal diet, hopefully before the bloody summer ends. And on the upside, I actually gained 2 lbs this past week. It's been a long time since that has happened.
So now it's summer concert time and we are busying ourselves with seeing those that I can get to. life is a bit day by day at the moment -good days and not so brill days. So I take advantage of the days when I am feeling not so bad and we go out, even if it's just for ice cream. Got to make the most of the good weather while it's warm. We manage to get to the beach most weekends for a few hours. I find it so therapeutic, but funnily enough a bit tiring though nothing that half an hour on the couch doesn't fix.
So that's all the news for now untill I get my scan results and see what's what.
What the bloody hell does that mean? Well, you soon find out it means you cant eat much of anything that's tasty. Very few veggies, green beans, asparagus -tips only, carrots, white spuds -no skin and beets. And that's it, and to make it worse, everything has to be overcooked like mushy veggies and cremated meat. And here we are in the summer with all the fresh veggies and salad stuffs that I cant have. Very few fresh fruits and no skin under any circumstances. Such a bugger. And of course Sue and I love to eat out, and we still do, but it does make it tough at times figuring out what I can eat off the menu. Surprising how many restaurants will not make changes to accommodate dietary needs. Stuck up snobs.
I never finished the radiation therapy because I ended up in hospital. So after I'm out I go and the oncologist in the city. He comes up with another chemo drug to try -we're scraping the bottom of the barrel now. So I just finished the second cycle of a 4 weeks cycle. Also went to see the radiology doctor to see if she could figure out a way to get me some radiation to help shrink back the tumour more quickly. She took a scan but alas she thinks there is no way to get to the tumour without impacting the intestine, and the bladder has had all the radiation it can take. Unfortunately that looks like a dead end. So I am hoping the current chemo drug is working -low percentage of 10% effectiveness though. But maybe I am the one out of ten. Should find out in 3 or 4 weeks.
Meanwhile I am getting a bit more used to the diet, but it's still tough when I see people eating things like clams and oysters (oh yum) at the raw bar -makes my mouth water, literally. If the chemo is working, then I should be able to go back to a more normal diet, hopefully before the bloody summer ends. And on the upside, I actually gained 2 lbs this past week. It's been a long time since that has happened.
So now it's summer concert time and we are busying ourselves with seeing those that I can get to. life is a bit day by day at the moment -good days and not so brill days. So I take advantage of the days when I am feeling not so bad and we go out, even if it's just for ice cream. Got to make the most of the good weather while it's warm. We manage to get to the beach most weekends for a few hours. I find it so therapeutic, but funnily enough a bit tiring though nothing that half an hour on the couch doesn't fix.
So that's all the news for now untill I get my scan results and see what's what.
Happy summer and be well to all.
Chris
Saturday, April 21, 2012
The Story So Far
Well, my CT Scan in February showed that the chemo worked on the outlying tumours but had zero affect on the maain tumour. So they stopped the chemo and suggested I might want to think about a phase 1 trial. So off I go to Sloan to see the Dir of trials and was told that untill the bleeding in my neo subsides and my levels stabilize, I'm not much of a candidate for a trial.
It is a bit scary knowing that you are the guinea pig here -I could be the first human being to have been given this drug! Wow. Anyway, he said there are 2 trials he has that would be a fit for me, and one might actually work on the tumour! Get a load of that. Both trials are targeted agents rather than general chemo and apparently the results show a little quicker. So I have an appointment in 2 weeks and if all is well, and no bleeding, I can start the process. As I was still bleeding, nothing can be done for now.
After that I went to a checkup with my surgeon, different building now (Sloan is all over the city) and, at my insistence, they check my blood to find the hemoglobin at 5.7 -a wee bit low. So they flush out the neo and get that running clear -loads of old blood- then send me off to urgent care for the transfusions. So then I have to go through the process there and we finally got back home 20 hours after we left the previous day.
On chatting with the urologist I told him I'm in a catch 22 with this bleeding and trial. See, here's the prob: the tumour is pressing on the neo bladder and probably creating a friable surface, which by it's nature will tend to bleed, and the only way to reduce the bleeding is to reduce the tumour which requires chemo or some drug, which I can't get because of the bleeding. So I am hoping the trial director, my urologist and oncologist are all going to chat and come up with a plan to get me started on something.
Meanwhile, I'm not about to sit back and let this cancer consume me because these people can't figure their way out of a paper bag. So as a back-up I have a referral to an oncologist in NY Presbyterian/Cornell. And it so happens someone I know is being treated there and has shown more than 50% shrinkage over 6 months with Docetaxel and a phase 1 trial drug -unknown name, just a number. So who knows. I see the oncologist at Cornell, but again, I need to have my levels higher than what they are and the neo bleeding under control.
Back to Sloan I go this month to see my oncologist and he suggests a round of radiation to the bladder to seal up the surface and another round to the tumour to reduce it and pull it away from the bladder might be in order. Went to see the radiology doctor at the local Sloan facility and have been tattooed and am ready to go with radiation, hopefully starting next week. I really hope this works as I am living from transfusion to transfusion.
That's it for the next month while I have the radiation.
Be well to All,
Chris
Saturday, February 11, 2012
And So We Start Again
Christmas is all done and we are back to reality for a while untill summer. I usually get the Christmas decorations down by Twelfth Night. I was brought up believing that if you left them up longer it was a year of bad luck. And with this cancer, I don't need to tempt fate. So down they came on the 6th January.
I'm now back on the swine chemo. Started first round a couple of days before NY Eve and sort of buggered up the holidays. A slight touch of nausea for the weekend. We were out for NY Eve dinner and I took a smalll bite of my food and had to get up and leave the table whilst I got myself setled down. I just couldn't eat anything. Watching the others eat and all the food coming past me in the restaurant didn't bother me. Strange but there we are.
And that seemed to be the pattern -same for round 2. Last Thursday I had round 3 and started anti-nausea tablets on Friday and, so far, they seem to be working. Having said that, it is about the only side effect I have, apart from slight fatigue, so it's not too bad. Generally eatying well and holding weight. I have a CT scan at the end of this month and will see how well the chemo is working. Fingers crossed.
So, according to the overgrown rat from Pensylvannia, we have 6 more weeks of winter. I'll take that, especially if we have the temperatures we've had of late. Maybe the rat did well for once. I never quite understood thetradition anyway. Here is this poor sod Phil in a nice warm burrow, he gets dragged outside in the cold to see if he see's his shadow -like he really cares. The bit that escapes me is that the bloke who drages Phil out, casts an equal shadow. So he could just look down and decide if Phil would see his shadow -of course no one seems to look upwards and decide if it's sunny...
Anyway, Easter is around the corner and that one I get. I'm taking off the Friday for a 3 day weekend. In Englang it's a 4 day holiday and most places shut down -of course not the pubs or there would be rioting. Time to order the Easter egg full of chocolate'ss and toffee's. Haven't found any really good hot cross buns. All the one's I've seen are a bit too sticky on top. I shall continue the search this year. The other thing I really miss are tea cakes. -lovely toasted with a cuppa.
Other than that work is good, plenty of it, and the compnay is growing at a fair rate. Checking out flat scren TV's at the moment. Decided I have the space and they are not so expensive these days.
So that's it for now.
Be well to All,
Chris
I'm now back on the swine chemo. Started first round a couple of days before NY Eve and sort of buggered up the holidays. A slight touch of nausea for the weekend. We were out for NY Eve dinner and I took a smalll bite of my food and had to get up and leave the table whilst I got myself setled down. I just couldn't eat anything. Watching the others eat and all the food coming past me in the restaurant didn't bother me. Strange but there we are.
And that seemed to be the pattern -same for round 2. Last Thursday I had round 3 and started anti-nausea tablets on Friday and, so far, they seem to be working. Having said that, it is about the only side effect I have, apart from slight fatigue, so it's not too bad. Generally eatying well and holding weight. I have a CT scan at the end of this month and will see how well the chemo is working. Fingers crossed.
So, according to the overgrown rat from Pensylvannia, we have 6 more weeks of winter. I'll take that, especially if we have the temperatures we've had of late. Maybe the rat did well for once. I never quite understood thetradition anyway. Here is this poor sod Phil in a nice warm burrow, he gets dragged outside in the cold to see if he see's his shadow -like he really cares. The bit that escapes me is that the bloke who drages Phil out, casts an equal shadow. So he could just look down and decide if Phil would see his shadow -of course no one seems to look upwards and decide if it's sunny...
Anyway, Easter is around the corner and that one I get. I'm taking off the Friday for a 3 day weekend. In Englang it's a 4 day holiday and most places shut down -of course not the pubs or there would be rioting. Time to order the Easter egg full of chocolate'ss and toffee's. Haven't found any really good hot cross buns. All the one's I've seen are a bit too sticky on top. I shall continue the search this year. The other thing I really miss are tea cakes. -lovely toasted with a cuppa.
Other than that work is good, plenty of it, and the compnay is growing at a fair rate. Checking out flat scren TV's at the moment. Decided I have the space and they are not so expensive these days.
So that's it for now.
Be well to All,
Chris
Wednesday, December 14, 2011
Tough Few Months
Well, I had a few really tough months to deal with (September through November) since I last posted, though I am on the road back to normalcy, well, at least as much as one can be with cancer. I won't bore you with all the details but I had this new trial chemo that probably overdosed me. I was back and forth to the urgent care (Sloans version of Emergency) about 6 or 7 times and during that period I was admitted twice for 6 days each time and lost 30 lbs over the course of about 3 months. Turns out the chemo was a wee bit tooo strong for me at the maximum dose and knocked the crap out of me. I had so many issues to deal with, neither Sue nor I knew quite where to turn, and neither did Sloan. Eventually all the issue started to subside and I am now left only with the discomfort caused by the tumours.
I went to see the oncologisgt some weeks ago who decided I was too weak to resume chemo and I didn't disagree with him, though it had worked very well and shrank the tumour by quite a bit. He said to come back in a few weeks.
So back to the oncologist I go last week, the 8th, and got some pretty bad news. During the time I wasn't on chemo -last dose was August- it has spread to the left lung, the intestine and more importantly, the liver. All very small areas but the liver is obviously the biggest concern. So now I am back on a chemo protocol. The drug I am going to be on works better if the B12 and folic acid levels are elevated, so I am being dosed up in preparpartion for cycle one chemo on 23rd December -it's not so bad in terms of time as I will go once each three weeks. I'm hoping the side effects will not kick in untill after the holidays. Supposedly the vitamins help with that, will see.
Right now my appetite is great and energy levels are OK -ish. I am still quite anemic and fatigued -in fact this past weekend I had a couple of units of blood transfused and am feeling pretty good now.
I was off work for quite a while during summer and they were very understanding and held my job for me. I have been back to work, full days, for the past 3 or 4 weeks and feeling good. I find working helps takes my mind off all that's going on. I get a bit tired during the day and like to come home and sit down for half an hour to recoup. It revives me and I'm then good for dinner. I've done enough couch lounging over the past months to last me a lifetime, so I thought bugger it, time to use up some energy. Provided I can get a little rest each day, I'm OK.
So Sue and I have been out and about a bit over the past weeks making the most of the season. We love going to the places that are all done up -so many are decorated to the hilt and it adds that festive and cosy feeling. This coming weekend we are going to a place we've been a few times, the Milleridge Inn. They have carolers that walk around the place and sing at the tables -sort of a Santa inspired Mariachi band.
My son, Dominic, is visiting for five days over Christmas and we have plans to go out and sample the festivities. I'm so looking forward to it.
I'll blog again after the holidays and chemo.
That's about all for now. Happy Holidays to All.
Be well to All,
Chris
I went to see the oncologisgt some weeks ago who decided I was too weak to resume chemo and I didn't disagree with him, though it had worked very well and shrank the tumour by quite a bit. He said to come back in a few weeks.
So back to the oncologist I go last week, the 8th, and got some pretty bad news. During the time I wasn't on chemo -last dose was August- it has spread to the left lung, the intestine and more importantly, the liver. All very small areas but the liver is obviously the biggest concern. So now I am back on a chemo protocol. The drug I am going to be on works better if the B12 and folic acid levels are elevated, so I am being dosed up in preparpartion for cycle one chemo on 23rd December -it's not so bad in terms of time as I will go once each three weeks. I'm hoping the side effects will not kick in untill after the holidays. Supposedly the vitamins help with that, will see.
Right now my appetite is great and energy levels are OK -ish. I am still quite anemic and fatigued -in fact this past weekend I had a couple of units of blood transfused and am feeling pretty good now.
I was off work for quite a while during summer and they were very understanding and held my job for me. I have been back to work, full days, for the past 3 or 4 weeks and feeling good. I find working helps takes my mind off all that's going on. I get a bit tired during the day and like to come home and sit down for half an hour to recoup. It revives me and I'm then good for dinner. I've done enough couch lounging over the past months to last me a lifetime, so I thought bugger it, time to use up some energy. Provided I can get a little rest each day, I'm OK.
So Sue and I have been out and about a bit over the past weeks making the most of the season. We love going to the places that are all done up -so many are decorated to the hilt and it adds that festive and cosy feeling. This coming weekend we are going to a place we've been a few times, the Milleridge Inn. They have carolers that walk around the place and sing at the tables -sort of a Santa inspired Mariachi band.
My son, Dominic, is visiting for five days over Christmas and we have plans to go out and sample the festivities. I'm so looking forward to it.
I'll blog again after the holidays and chemo.
That's about all for now. Happy Holidays to All.
Be well to All,
Chris
Thursday, August 25, 2011
Pile It On
Blimey, the prob with doing so well on the first cycle is that they increased the dose for the second cycle -went up dramatically by about 40%. Yikes. And dear me, did it hit pretty hard. Felt quite crappy afterwards and definitely turned me off my food -I eat a little but have little to no appetite. Making sure I eat high protein foods and drink my Ensure. Still quite anemic and have a low-ish white blood count, so risk of infection is always a concern. Hair is coming out by the handfulls -this happened last year then stopped and though I was very thin on top, I never went totally naked -in the tonsorial sense. This time though, I don't reckon I will be so lucky. I think I'll be an egghead by the end of September. Oh well, better bald and vertical than the alternative.
It never rains but what it pours. Went to see the doctor last week to see what was going on with the discomfort in my groin and the belly ache that I have developed. Nothing much came of that other than he believes the groin thing is related to the lymph node being swollen and pressing on a nerve and the belly ache probably due to the chemo upsetting my tummy. As a routine course, I gave a sample for a urinalysis. Well, wouldn't you know, turns out I have a staph infection, MRSA -not a very friendly little fellow. Is that just bloody brilliant or what. So on top of everything, we have this to deal with. Last Friday I went for my CT Scan and regular blood draw and they drew extra blood for a culture test to see if the MRSA is anywhere else, or colonised to the bladder.
This week, I got the scan and blood results -all absolutely F+*/*+g great news. The scan shows the lymph nodes have reduced and the tumour has gone down by about 10%. This is brilliant considering only 2 cycles, and the doc says that the second cycle really hasn't started to work much since this is a slow reaction drug. He was really excited and said he was looking forward to the next scan, and of course, we are just over the moon. Such a relief to know the chemo is working. And the blood culture showed negative -Phew! They would have admitted me if it was positive and I would have been stuck in hospital for a week or more on an IV antibiotic. So, for now it is colonised to the bladder and should, in all likelihood, stay there. I had the third cycle chemo this Tuesday and expect to be a bit shagged out over the weekend and early next week, if it follows the course of the second cycle.
But enough of the lamenting -I put it in just for info. On to the funner stuff
So we actually did do some fun stuff. Went to a brill concert one weekend -B52's. What a great band, and they put on an excellent show The place was pretty mobbed considering it was drizzling for most of the time. Another day we went over to FI to see some friends and have a spot of dinner. The bloke makes a great tomato sauce, complete with sausages and meatballs, of which, Sue is quite envious. She didn't ask for the recipe but I thought of taking some home and having it analysed and giving it to her as a Christmas present. Note to self, that's a totally wally idea.
Went to a couple of BBQ's this past weekend and had a nice day planned Sunday for Sue's birthday. But, for the second year in a row folks, it rained. Unbelievable. So we had to go to plan B which was a lovely dinner with friends, and we still had fun and so all was good.
No beach for a couple of weekends now and I'm having withdrawal... I need some sun! And this coming weekend doesn't look like it's going to cooperate since a hurricane is heading up the East coast for the weekend. Just bloody marvellous.
I can't believe the summer is almost over. Where did it go? We did a fair bit and went to a few concerts and such, but it seems summer is vanishing like a fart in the wind. Talking of... no, let's not get into that. On the bright side, the fall is looming and we have fun going out East to the wineries and farms to get pumpkins and fruit pies. Of course at the wineries we get a little piddled, and they have music and we take food and it's quite a fun outing.
This fall we were planning to visit Dominic in Chicago, probably late September/October time, but with all this chemo rubbish going on doesn't look like it's going to happen -I think it would be a little too tiring for me. If he can sort it out with work, Dominic might come over to NY and we can do the winery thing. Something different and fun to do.
All in all I'm feeling pretty good and more so knowing things are working and improvement's are happening.
That's all for now.
Be well to All,
Chris
So we actually did do some fun stuff. Went to a brill concert one weekend -B52's. What a great band, and they put on an excellent show The place was pretty mobbed considering it was drizzling for most of the time. Another day we went over to FI to see some friends and have a spot of dinner. The bloke makes a great tomato sauce, complete with sausages and meatballs, of which, Sue is quite envious. She didn't ask for the recipe but I thought of taking some home and having it analysed and giving it to her as a Christmas present. Note to self, that's a totally wally idea.
Went to a couple of BBQ's this past weekend and had a nice day planned Sunday for Sue's birthday. But, for the second year in a row folks, it rained. Unbelievable. So we had to go to plan B which was a lovely dinner with friends, and we still had fun and so all was good.
No beach for a couple of weekends now and I'm having withdrawal... I need some sun! And this coming weekend doesn't look like it's going to cooperate since a hurricane is heading up the East coast for the weekend. Just bloody marvellous.
I can't believe the summer is almost over. Where did it go? We did a fair bit and went to a few concerts and such, but it seems summer is vanishing like a fart in the wind. Talking of... no, let's not get into that. On the bright side, the fall is looming and we have fun going out East to the wineries and farms to get pumpkins and fruit pies. Of course at the wineries we get a little piddled, and they have music and we take food and it's quite a fun outing.
This fall we were planning to visit Dominic in Chicago, probably late September/October time, but with all this chemo rubbish going on doesn't look like it's going to happen -I think it would be a little too tiring for me. If he can sort it out with work, Dominic might come over to NY and we can do the winery thing. Something different and fun to do.
All in all I'm feeling pretty good and more so knowing things are working and improvement's are happening.
That's all for now.
Be well to All,
Chris
Monday, July 25, 2011
First Chemo
Well, I have survived my first chemo session. I took a pill, well, actually it was 6 pills that made up the dose. So I go along to Sloan in the city, they give me an anti-emetic, wait half an hour, give me the chemo pills, wait an hour and send me home. That's it! No IV's, no feeling like crap, nothing. Quite a non-event really, if one overlooks the underlying reason for the pills. And, I have to repeat this only every 3 weeks, though the whole treatment lasts for 24 weeks (9 sessions). Quite bloody marvelous actually. I’m sure the effects build over the course of time, though the drug has fairly minimal side effects.
Maybe I was a tad fatigued but rather tough to tell with the heat wave we've been having lately –me thinks this heat and humidity drains the best of us. This past week was the low time for white cells (neutropenic phase) so I stayed in all week. How good of me!
The PET scan showed that I had a tumour to the right of my incision, and that two lymph nodes in the right groin were inflamed, indicating probable involvement (the technical term for 'maybe cancerous') -not definitively diseased. Hmmm. To fix this I was offered a couple of choices; the standard drug called Pemetrexed given by a 10 minute IV; a trial drug called Tesetaxel given by a pill. Both are 3 weekly sessions. I’m sure you’ve already guessed that I went for the trial drug, and if you haven’t then you’re not paying attention. It has shown some very good activity in the European trials to date. And, seeing as I am a native European, maybe it will work well for me.
I look at this situation as all positive but there is an underlying dark side insofar as prognosis. If the drug takes, which I am confident it will, then I’m good to go, though likely having to live with recurrences. No prob, provided ‘live’ is the operative word. Another time I’ll look at the alternative –at least I have some.
The past few weeks have been tough for us all, particularly Sue, Dominic and, of course, myself. Funny how it is the same journey that each of us travel and share, but the perspectives vary widely. And we’ve been travelling this road for about 15 months now with some good high times mixed with some fairly low ones. Hindsight will tell whether the place I am at right now is a high or a low.
So, the journey continues, as we hoped it would, just with a slightly different slant than we had thought. We thought it would be a road to recovery and a gradual resuming of normal life. Now, we have a slight bump in the road that we have to navigate around. So be it. Happy hour and the beach await…
Be well to All,
Chris
Maybe I was a tad fatigued but rather tough to tell with the heat wave we've been having lately –me thinks this heat and humidity drains the best of us. This past week was the low time for white cells (neutropenic phase) so I stayed in all week. How good of me!
The PET scan showed that I had a tumour to the right of my incision, and that two lymph nodes in the right groin were inflamed, indicating probable involvement (the technical term for 'maybe cancerous') -not definitively diseased. Hmmm. To fix this I was offered a couple of choices; the standard drug called Pemetrexed given by a 10 minute IV; a trial drug called Tesetaxel given by a pill. Both are 3 weekly sessions. I’m sure you’ve already guessed that I went for the trial drug, and if you haven’t then you’re not paying attention. It has shown some very good activity in the European trials to date. And, seeing as I am a native European, maybe it will work well for me.
I look at this situation as all positive but there is an underlying dark side insofar as prognosis. If the drug takes, which I am confident it will, then I’m good to go, though likely having to live with recurrences. No prob, provided ‘live’ is the operative word. Another time I’ll look at the alternative –at least I have some.
The past few weeks have been tough for us all, particularly Sue, Dominic and, of course, myself. Funny how it is the same journey that each of us travel and share, but the perspectives vary widely. And we’ve been travelling this road for about 15 months now with some good high times mixed with some fairly low ones. Hindsight will tell whether the place I am at right now is a high or a low.
So, the journey continues, as we hoped it would, just with a slightly different slant than we had thought. We thought it would be a road to recovery and a gradual resuming of normal life. Now, we have a slight bump in the road that we have to navigate around. So be it. Happy hour and the beach await…
Be well to All,
Chris
Monday, July 11, 2011
Unfortunately, It's Not a Bad Dream-
Well, it has been many months since I have updated this blog. To be honest, I was rather hoping that I would not need to add any further updates -the idea being that I was done and dusted with the cancer. But oh noooo, not moi. Bloody thing came back.
Since my last blog some 9 months ago, I have been coming along really well. I felt great, had a good appetite -maybe a little too good!- and was able to carry on a pretty normal life. The new bladder is working like a charm -kudos to my surgeons- and I really don't think about not having a real bladder since this one works almost the same as the old one. My job is going really well and I am actually enjoying it and learning modern marketing (Google in fact). Sue and I have been out and about as usual and going about our daily lives without a thought to last years events.
Since surgery last September, I have been going for CT scans every 3 months and it was on the 9 month scan that a mass showed up, rather unusually placed on the abdominal wall, but nevertheless, there it was. My oncologist was certain of what the mass was, a recurrence of my bladder cancer, and so dispensed with usual needle biopsy -can't say as I am sad about that- and went for a PET scan instead. Apparently the PET scan lights up any area's that have tumours. So it is not really a case of what I have but more the extent of it.
Come Monday next, the 11th, I am off to the MSK facility in Commack to be scanned, a 2.5 to 3 hour ordeal, and then Tuesday into the city to get the results, and start the new round of chemo. I am pre-booked into the treatment suite -such a pleasant name for the place where they poison people- because I imagine the doc is pretty sure of the PET scan results, or maybe the scan is not even part of the treatment equation.
Of course I have a ton of questions for him, all of which we were too stunned to ask when we went in for the CT scan results 2 weeks ago. Sue was off that day and decided she would come into the city with me. I am so glad she was there. It was like a bomb going off in my stomach when they said I have a mass. Both of us were trying hard to concentrate and listen to what the doctor was saying, but it was hard holding back the tears.
I think Sue and I are getting to be a little more accepting of the idea that I have a recurrence, there is a treatment plan for it and it does not necessarily mean the end of the road for me -of course, that is always the first thing that goes through ones mind, and pops back quite frequently. However, my mood is good and I am quite confident this round of chemo will be as equally effective as the rounds I had prior to surgery. This is just another minor setback.
My boss is a champ . He has said to take whatever time I need and if I need to work from home, which fortunately with my job I could, it's no prob. Can't ask for more than that. He's a good bloke.
So that's all I know for now. Next time I write I will have the scan results and will have had my first bout of poisoning -I think the PC term is infusion, but who gives a rats bum.
Be well to All,
Chris
Since my last blog some 9 months ago, I have been coming along really well. I felt great, had a good appetite -maybe a little too good!- and was able to carry on a pretty normal life. The new bladder is working like a charm -kudos to my surgeons- and I really don't think about not having a real bladder since this one works almost the same as the old one. My job is going really well and I am actually enjoying it and learning modern marketing (Google in fact). Sue and I have been out and about as usual and going about our daily lives without a thought to last years events.
Since surgery last September, I have been going for CT scans every 3 months and it was on the 9 month scan that a mass showed up, rather unusually placed on the abdominal wall, but nevertheless, there it was. My oncologist was certain of what the mass was, a recurrence of my bladder cancer, and so dispensed with usual needle biopsy -can't say as I am sad about that- and went for a PET scan instead. Apparently the PET scan lights up any area's that have tumours. So it is not really a case of what I have but more the extent of it.
Come Monday next, the 11th, I am off to the MSK facility in Commack to be scanned, a 2.5 to 3 hour ordeal, and then Tuesday into the city to get the results, and start the new round of chemo. I am pre-booked into the treatment suite -such a pleasant name for the place where they poison people- because I imagine the doc is pretty sure of the PET scan results, or maybe the scan is not even part of the treatment equation.
Of course I have a ton of questions for him, all of which we were too stunned to ask when we went in for the CT scan results 2 weeks ago. Sue was off that day and decided she would come into the city with me. I am so glad she was there. It was like a bomb going off in my stomach when they said I have a mass. Both of us were trying hard to concentrate and listen to what the doctor was saying, but it was hard holding back the tears.
I think Sue and I are getting to be a little more accepting of the idea that I have a recurrence, there is a treatment plan for it and it does not necessarily mean the end of the road for me -of course, that is always the first thing that goes through ones mind, and pops back quite frequently. However, my mood is good and I am quite confident this round of chemo will be as equally effective as the rounds I had prior to surgery. This is just another minor setback.
My boss is a champ . He has said to take whatever time I need and if I need to work from home, which fortunately with my job I could, it's no prob. Can't ask for more than that. He's a good bloke.
So that's all I know for now. Next time I write I will have the scan results and will have had my first bout of poisoning -I think the PC term is infusion, but who gives a rats bum.
Be well to All,
Chris
Tuesday, October 26, 2010
Much Improvement
At 6 weeks post surgery, I am definitely improving quite a bit. I had the catheters out a couple of weeks ago so the new bladder is on it's own with no outside help. And I have to say, so far, it's behaving itself and doing pretty much what one would expect a bladder to do. Bearing in mind my bladder is made out of small intestine, this is pretty good progress.
The appetite is coming back slowly. I get hungry though volume of intake is still down. I actually managed to eat 2 whole slices of pizza the other day -usually 1 1/2 and I'm bloated. All my taste buds have come back and wine is definitely back on the menu, as is curry and other spicy food.
I'm not back to dancing yet, the wounds haven't healed quite that much, but I reckon in another month or so I'll be back on the floor, at least for the less energetic dances. I have a doctors ban on lifting anything heavier than a gallon of water for the first 3 months post surgery. And similar goes for activity, though the doc's say to listen to the bod and be smart.
Sue and I finally started to venture out to places that are close to home -we were both getting pretty home bound. We just started to hit the networking circuit again. Those events are definitely fun, and you never know who you'll meet there. Going out is really not a problem physically -I can drive and walk and stand- but it's more of a mental issue with being confident that the new bladder will behave itself, i.e. do I have control over it. It's quite scary the first couple of times out because I really didn't know what to expect, but all went well and now I'm pretty confident. Silly really because it's not a lot different now than a few months ago -I just have a new part that I have to get used to controlling.
I have follow-up visits with the oncologist and surgeon just before Christmas and am hoping for good news there. I have a CAT scan the week before. Untill then I just have recovery time -they said call if you have a prob. The surgeon calls me her poster boy because my bits are working rather well, so far. Hopefully it will continue.
I'm still on the search for a job, though now I can plan to go and see companies, if I were lucky enough to get an interview. This time of year is never brilliant for hiring, but got to keep at it.
Don't have too much more to report for now.
Be well to All,
Chris
The appetite is coming back slowly. I get hungry though volume of intake is still down. I actually managed to eat 2 whole slices of pizza the other day -usually 1 1/2 and I'm bloated. All my taste buds have come back and wine is definitely back on the menu, as is curry and other spicy food.
I'm not back to dancing yet, the wounds haven't healed quite that much, but I reckon in another month or so I'll be back on the floor, at least for the less energetic dances. I have a doctors ban on lifting anything heavier than a gallon of water for the first 3 months post surgery. And similar goes for activity, though the doc's say to listen to the bod and be smart.
Sue and I finally started to venture out to places that are close to home -we were both getting pretty home bound. We just started to hit the networking circuit again. Those events are definitely fun, and you never know who you'll meet there. Going out is really not a problem physically -I can drive and walk and stand- but it's more of a mental issue with being confident that the new bladder will behave itself, i.e. do I have control over it. It's quite scary the first couple of times out because I really didn't know what to expect, but all went well and now I'm pretty confident. Silly really because it's not a lot different now than a few months ago -I just have a new part that I have to get used to controlling.
I have follow-up visits with the oncologist and surgeon just before Christmas and am hoping for good news there. I have a CAT scan the week before. Untill then I just have recovery time -they said call if you have a prob. The surgeon calls me her poster boy because my bits are working rather well, so far. Hopefully it will continue.
I'm still on the search for a job, though now I can plan to go and see companies, if I were lucky enough to get an interview. This time of year is never brilliant for hiring, but got to keep at it.
Don't have too much more to report for now.
Be well to All,
Chris
Friday, October 8, 2010
All Good So Far
Well, here I am just about 2 weeks out of hospital and over 3 weeks post surgery. Recovery is coming along quite nicely with everything healing up as expected and my mobility improving a little day by day. I still don't have the OK to drive so am a bit limited in getting around. Though Sue is doing a grand job there and is running odd errands as and when needed -she's been a real trouper through this whole ordeal.
I can get around the house pretty well, I can now walk up the stairs normally and not one step at a time and I have been walking around the complex a bit. Walking is apparently THE way to speed up recovery. I get a bit tired now and then so I rest up and try not to over do it, which is easy to do at home because it's familiar and there are just things that one doesn't think about doing that might harm the healing, like twisting and bending. I can do these but with care and slowly. Lifting is also a cause for concern and I'm not supposed to lift anything heavier than a gallon of water. I gained back 3 lbs since leaving the hospital, though I will be cautious and keep around the weight I am at the moment.
So this week, in fact yesterday, we went to Sloan to see the oncologist and the surgeon -good news on both fronts.
The oncologist told us the pathology reports were negative (clear) for the prostate and lymph nodes, the tumour had not invaded the muscle as much as first thought and that he didn't need to see me untill January for the first 3 monthly check-up. This was such a relief we were both in tears as the anticipation was pretty high. The surgeon had told Sue after the operation that everything looked clean and he expected that I was going to be just fine. But there is always that seed of doubt untill the pathology is done.
Then we went to see the surgeon and they removed some of the staples and my catheter. I was really nervous about the catheter insofar as bladder control -I really expected to be wetting myself for the first few weeks. But as it happens I already have pretty good control. The nurse had me start and stop the flow a few times and I did it straight away. They said this was a really good sign. Since yesterday morning I have made it to the bathroom every time with no accidents (so far), though a little damp overnight. I go about every 2 hours to get used to controlling the bladder which is the really important bit. Then I gradually increase the time between going to get to the point where I only need to go every 4 or 5 hours -a normal amount of time. So this was also very good news. I go back to the surgeon next week to have the rest of the staples removed and hopefully be signed off to drive.
This past week we had some visitors, Chris, Ed and Eric came over Wednesday for pizza and it we had a good time. Haven't seen them in a while, except for Eric who came to see me in hospital when we sat outside in the sun on the terrace. And this evening Sue's cousin Patricia and hubby Tony are coming over for pasta (what a surprise). We're having Sue's Penne Alla Vodka -she has a great recipe and it's really good. Looking forward to that.
This whole cancer 'event' seems a little surreal right now. The time has passed so quickly, from the diagnosis in March to today, that I can't believe everything that happened in between, has actually happened. Here I sit, cancer free and able to go to the loo normally, more or less. Though I'm not sure quite where I expected to be, I wasn't expecting to be so far along at this point in time. And I'm so pleased I opted for the neo-bladder diversion rather than the pouch or bag -it was definitely the right move.
So all is good today, and that's as far as I look -one day at a time.
Be well to All,
Chris
I can get around the house pretty well, I can now walk up the stairs normally and not one step at a time and I have been walking around the complex a bit. Walking is apparently THE way to speed up recovery. I get a bit tired now and then so I rest up and try not to over do it, which is easy to do at home because it's familiar and there are just things that one doesn't think about doing that might harm the healing, like twisting and bending. I can do these but with care and slowly. Lifting is also a cause for concern and I'm not supposed to lift anything heavier than a gallon of water. I gained back 3 lbs since leaving the hospital, though I will be cautious and keep around the weight I am at the moment.
So this week, in fact yesterday, we went to Sloan to see the oncologist and the surgeon -good news on both fronts.
The oncologist told us the pathology reports were negative (clear) for the prostate and lymph nodes, the tumour had not invaded the muscle as much as first thought and that he didn't need to see me untill January for the first 3 monthly check-up. This was such a relief we were both in tears as the anticipation was pretty high. The surgeon had told Sue after the operation that everything looked clean and he expected that I was going to be just fine. But there is always that seed of doubt untill the pathology is done.
Then we went to see the surgeon and they removed some of the staples and my catheter. I was really nervous about the catheter insofar as bladder control -I really expected to be wetting myself for the first few weeks. But as it happens I already have pretty good control. The nurse had me start and stop the flow a few times and I did it straight away. They said this was a really good sign. Since yesterday morning I have made it to the bathroom every time with no accidents (so far), though a little damp overnight. I go about every 2 hours to get used to controlling the bladder which is the really important bit. Then I gradually increase the time between going to get to the point where I only need to go every 4 or 5 hours -a normal amount of time. So this was also very good news. I go back to the surgeon next week to have the rest of the staples removed and hopefully be signed off to drive.
This past week we had some visitors, Chris, Ed and Eric came over Wednesday for pizza and it we had a good time. Haven't seen them in a while, except for Eric who came to see me in hospital when we sat outside in the sun on the terrace. And this evening Sue's cousin Patricia and hubby Tony are coming over for pasta (what a surprise). We're having Sue's Penne Alla Vodka -she has a great recipe and it's really good. Looking forward to that.
This whole cancer 'event' seems a little surreal right now. The time has passed so quickly, from the diagnosis in March to today, that I can't believe everything that happened in between, has actually happened. Here I sit, cancer free and able to go to the loo normally, more or less. Though I'm not sure quite where I expected to be, I wasn't expecting to be so far along at this point in time. And I'm so pleased I opted for the neo-bladder diversion rather than the pouch or bag -it was definitely the right move.
So all is good today, and that's as far as I look -one day at a time.
Be well to All,
Chris
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