Sooooo, during chemo today my oncologist saw me rubbing my shoulder, it's been bothering me on and off for a week or so. Nicky and I had put it down to a trapped nerve and we were hoping simple massage would alleviate the symptom, my oncologist sent me to have my shoulder scan and I was immediately called back to the office.
It was like a bad drug ad, side effects of chemo may include nausea, vomiting, diarrhea, etc, etc, oh and AND DEEP VEIN THROMBOSIS.
I have a clot in my Axial vein (Shoulder->Limb). Blood thinners have been added to my regimen, shots for the next 6 days and warfarin until my treatment is complete. Its not quite what I was hoping for but what are you going to do. Oh yes, Nicky's and my idea of using massage to ease the pain, a complete no no, apparently it can cause the clot to break up and make its way to the lungs where it will do naughty things to me. So if Drs Henzie and Henzie ever give you advice do the opposite and you should be fine.
On a positive note, I sat next to a lady today who was having her final treatment, it was very motivating to see the end game.
later.
Tuesday, September 30, 2008
Monday, September 29, 2008
Cycle 2
Well, tomorrow sees the start of cycle 2. Once the cycle is complete, in addition to the PET scan, I will be meeting with a radiation specialist; I can't say I am very excited about said meeting, I was really hoping to avoid radiation therapy if at all possible, but the bulkiness of my mass is such that it will be required.
Starting to loose my hair, just a little at a time, but it is definitely starting to fall out; another month and I'll be fully Yul Brinner.
So far the chemo does not seem to have damaged my lungs or heart, I will undergo pulmonary function testing in about a month to confirm.
It really is amazing how toxic these drugs are. I remember seeing my mum, just before she died and thinking to myself that she had endured two years of pain and suffering for naught, but I never realized quite how unpleasant it must have been, there's nothing like first hand knowledge. Still my prognosis is so much better than my mums, I just hope I am bearing this illness half as bravely and selflessly as she bore hers.
I'll sign off now and update as soon as the unpleasantness has passed. I'll leave it to you to decide what the unpleasantness is:
A. Side effects of chemo.
B. Watching my already meager retirement account dwindle to nothing at all.
C. Watching Sarah Palin explain foreign policy in hockey mom analogies. (Oooh eer, political, sorry)
Starting to loose my hair, just a little at a time, but it is definitely starting to fall out; another month and I'll be fully Yul Brinner.
So far the chemo does not seem to have damaged my lungs or heart, I will undergo pulmonary function testing in about a month to confirm.
It really is amazing how toxic these drugs are. I remember seeing my mum, just before she died and thinking to myself that she had endured two years of pain and suffering for naught, but I never realized quite how unpleasant it must have been, there's nothing like first hand knowledge. Still my prognosis is so much better than my mums, I just hope I am bearing this illness half as bravely and selflessly as she bore hers.
I'll sign off now and update as soon as the unpleasantness has passed. I'll leave it to you to decide what the unpleasantness is:
A. Side effects of chemo.
B. Watching my already meager retirement account dwindle to nothing at all.
C. Watching Sarah Palin explain foreign policy in hockey mom analogies. (Oooh eer, political, sorry)
Thursday, September 25, 2008
Looks like it's going to be a good weekend
My latest blood test reveal continuing improvement in my white counts, no more drugs for the next couple of days.
I am still experiencing significant pain in my abdomen & chest, I'm not sure if its the neupogen or some sort of protest from the mass.
One more cycle, that's two sessions of chemo to the uninitiated, and I will be going in for a PET scan. I am looking forward to seeing what, if any changes have taken place. I am, of course, hoping that the mass is significantly diminished, but I will settle for any progress.
So, all things considered, I am ready for a pretty normal weekend, then back on the juice on Tuesday, YUM.
I am still experiencing significant pain in my abdomen & chest, I'm not sure if its the neupogen or some sort of protest from the mass.
One more cycle, that's two sessions of chemo to the uninitiated, and I will be going in for a PET scan. I am looking forward to seeing what, if any changes have taken place. I am, of course, hoping that the mass is significantly diminished, but I will settle for any progress.
So, all things considered, I am ready for a pretty normal weekend, then back on the juice on Tuesday, YUM.
Tuesday, September 23, 2008
Neupogen is the racing hounds tackle
I went in for my post chemo blood tests today. My white counts have improved, week on week, by 6 points, apparently the neupogen is working really well. Likewise my hemoglobin is almost normal which is a phenomenal improvement.
There are consequences however, I am suffering from some fairly unpleasant bone and muscle pain. It's a side effect of the neupogen and a small price to pay.
Other than that I am feeling much better than last week, almost human again, another couple of days and I should be fighting fit and ready to take on the next treatment. It's funny, but the treatments seem to sneak up on you, you would think that 15 days between treatments would be a long time but they absolutely define my schedule with the intervening time somehow compressed.
Hopefully, Thursdays blood tests will be likewise positive and I might be able to enjoy some claret this weekend.
There are consequences however, I am suffering from some fairly unpleasant bone and muscle pain. It's a side effect of the neupogen and a small price to pay.
Other than that I am feeling much better than last week, almost human again, another couple of days and I should be fighting fit and ready to take on the next treatment. It's funny, but the treatments seem to sneak up on you, you would think that 15 days between treatments would be a long time but they absolutely define my schedule with the intervening time somehow compressed.
Hopefully, Thursdays blood tests will be likewise positive and I might be able to enjoy some claret this weekend.
Tuesday, September 16, 2008
2 down
Last weekend was fantastic, I felt healthier than I have for about 6 months, maybe a little longer.
So I was quite cheerful when I went in for my second infusion of cytotoxic juice, aka chemo. While I was there, Nicky nicked off to have her hair done, she looks fabulous BTW; she referred to it as her 'appointment' because she felt it would be insensitive to say 'haircut' amongst a bunch of chemo patients loosing their hair. Made me chuckle.
The actual treatment went off without a hitch, but I have been brought back down to earth with a bump, and maybe a bounce or two. The after effects are compounded by the accumulation of junk and I have to admit that I am not up to much at the moment. I have all the right medications so it is totally manageable, and will probably pass in 3 or 4 days, but still, uurrrgh.
We have finally sorted out my disability pay and I should be getting my first check within the next couple of weeks, phew, I was beginning to wonder how I was going to pay the AppleTV bill.
We have yet to hear from BA regarding the refund of our flights, hopefully there will be some progress this week.
Right, I'm off to the couch to be waited on hand and foot.
NIIIIICCCCKKKKYYYYY, CHOCOLATE MILK, NOOOOOWWWW.
So I was quite cheerful when I went in for my second infusion of cytotoxic juice, aka chemo. While I was there, Nicky nicked off to have her hair done, she looks fabulous BTW; she referred to it as her 'appointment' because she felt it would be insensitive to say 'haircut' amongst a bunch of chemo patients loosing their hair. Made me chuckle.
The actual treatment went off without a hitch, but I have been brought back down to earth with a bump, and maybe a bounce or two. The after effects are compounded by the accumulation of junk and I have to admit that I am not up to much at the moment. I have all the right medications so it is totally manageable, and will probably pass in 3 or 4 days, but still, uurrrgh.
We have finally sorted out my disability pay and I should be getting my first check within the next couple of weeks, phew, I was beginning to wonder how I was going to pay the AppleTV bill.
We have yet to hear from BA regarding the refund of our flights, hopefully there will be some progress this week.
Right, I'm off to the couch to be waited on hand and foot.
NIIIIICCCCKKKKYYYYY, CHOCOLATE MILK, NOOOOOWWWW.
Thursday, September 11, 2008
Counts are up
My latest set of blood tests show both white and hemoglobin counts are climbing which is really good news; no meds for the next couple of days, hooray!
No news on the sed-rate, should get that result on Tuesday, all the signs suggest that it should be lower which would indicate that the treatment is working.
Aside from general weakness I am actually feeling pretty good, this weekend should be relatively normal, of course the next batch of chemo is scheduled for Tuesday next, so it wont last, but even so.
We continue to be fed and watered by our amazing friends, I can't tell you how grateful we are for the sustenance, especially as I am currently eating like a horse, Nicky is going to have me fitted with a nosebag to save on washing up.
Dad went back today, which is very sad, hopefully he can come back for Christmas, the kids may actually demand it.
Nicky says that I am grumpy, which I know I am; I'll do my best to not be but there are only so many episodes of spongebob you can watch before you take on the persona of squidward.
No news on the sed-rate, should get that result on Tuesday, all the signs suggest that it should be lower which would indicate that the treatment is working.
Aside from general weakness I am actually feeling pretty good, this weekend should be relatively normal, of course the next batch of chemo is scheduled for Tuesday next, so it wont last, but even so.
We continue to be fed and watered by our amazing friends, I can't tell you how grateful we are for the sustenance, especially as I am currently eating like a horse, Nicky is going to have me fitted with a nosebag to save on washing up.
Dad went back today, which is very sad, hopefully he can come back for Christmas, the kids may actually demand it.
Nicky says that I am grumpy, which I know I am; I'll do my best to not be but there are only so many episodes of spongebob you can watch before you take on the persona of squidward.
Tuesday, September 9, 2008
Checking the counts
Nicky and I have just returned from the oncologists. They checked my counts and I am relieved to say that my white counts are great and even my hemoglobin is improved. Great news.
I still feel particularly weak, especially in the legs, but that is to be expected.
Everyone continues to be incredibly kind. Nicky had a girls night out on Sunday and was basically prevented from opening her purse at every turn. Thanks ladies, she really appreciated it.
We also have a constant supply of dinners turning up at the house which really relieves some of the day to day rigmarole. The dinners are always delicious and because of the steroids, I am always hungry! Danielle dropped of ribs and corn this afternoon, I can't wait.
Missing work, not that I could contribute much at the moment but I miss my friends and the feeling of being involved. Still, I am enjoying watching the progress they are making, even if from afar.
I have more blood tests on Thursday in readiness for the next chemo, we should get a small measure of how effective the last treatment was, something called a sed-rate, hopefully I'll have more good news for you then. Ta Ta.
I still feel particularly weak, especially in the legs, but that is to be expected.
Everyone continues to be incredibly kind. Nicky had a girls night out on Sunday and was basically prevented from opening her purse at every turn. Thanks ladies, she really appreciated it.
We also have a constant supply of dinners turning up at the house which really relieves some of the day to day rigmarole. The dinners are always delicious and because of the steroids, I am always hungry! Danielle dropped of ribs and corn this afternoon, I can't wait.
Missing work, not that I could contribute much at the moment but I miss my friends and the feeling of being involved. Still, I am enjoying watching the progress they are making, even if from afar.
I have more blood tests on Thursday in readiness for the next chemo, we should get a small measure of how effective the last treatment was, something called a sed-rate, hopefully I'll have more good news for you then. Ta Ta.
Friday, September 5, 2008
No sleep for me
Well this is the second night in a row that I have managed no more than two hours sleep.
It's not a case of not being able to close my eyes and drop off, more a sudden waking with a million thoughts rushing through my head.
It could be the steroids, which I am almost done with for this session but definitely worth a query to the powers that be.
Dad arrived today which lifted my spirits enormously, he's only here for a week which seems ridiculously short but I'll take what I can get.
Nicky continues to fire on all cylinders, taking care of an occasionally grumpy Justin can not be that much fun. An old military friend of mine who had a similar experience with his beau suggested I apologize now for all the things I might say, good advice I think.
I am going to go and lie in front of the TV and see if early morning TV can dull my mind enough to make me sleep.
It's not a case of not being able to close my eyes and drop off, more a sudden waking with a million thoughts rushing through my head.
It could be the steroids, which I am almost done with for this session but definitely worth a query to the powers that be.
Dad arrived today which lifted my spirits enormously, he's only here for a week which seems ridiculously short but I'll take what I can get.
Nicky continues to fire on all cylinders, taking care of an occasionally grumpy Justin can not be that much fun. An old military friend of mine who had a similar experience with his beau suggested I apologize now for all the things I might say, good advice I think.
I am going to go and lie in front of the TV and see if early morning TV can dull my mind enough to make me sleep.
Wednesday, September 3, 2008
Definitely knackered
Well the anti-nausea medicine seems to be doing its job, at least nominally; but I have to admit I am absolutely knackered.
Slept a lot today, but still feel incredibly drained. I forced myself out of the house just to walk around the block but I wasn't up for much more.
One day at a time, soon be through.
Slept a lot today, but still feel incredibly drained. I forced myself out of the house just to walk around the block but I wasn't up for much more.
One day at a time, soon be through.
The day after....
Well the day after yesterday, otherwise it sounds a little too dramatic.
Its been almost 24 hrs since the treatment and normal still seems to hold sway, but normal has some qualifications:
+ I am pretty dizzy but that could be the Hemoglobin count. It manifests as a rocking boat sensation, it is very strange.
+ My hand eye doesn't seem to be what it should, it has taken me some time to write this post!
I'll let you know if anything else materializes.
On a positive note, my Father arrives tomorrow, for a week. I am fully committed to taking him out onto the golf course, even if that means all I do is drive the cart. He loves playing here, the weather is a little more agreeable than the UK.
Kids are back in school and 'seem' to be doing well; Nicky has instituted a mandatory hand sanitizing regime in the house, if you visit expect to be bathed in Purell.
Chin Chin.
Its been almost 24 hrs since the treatment and normal still seems to hold sway, but normal has some qualifications:
+ I am pretty dizzy but that could be the Hemoglobin count. It manifests as a rocking boat sensation, it is very strange.
+ My hand eye doesn't seem to be what it should, it has taken me some time to write this post!
I'll let you know if anything else materializes.
On a positive note, my Father arrives tomorrow, for a week. I am fully committed to taking him out onto the golf course, even if that means all I do is drive the cart. He loves playing here, the weather is a little more agreeable than the UK.
Kids are back in school and 'seem' to be doing well; Nicky has instituted a mandatory hand sanitizing regime in the house, if you visit expect to be bathed in Purell.
Chin Chin.
Tuesday, September 2, 2008
1 down, 13 to go
So my first treatment went off without a hitch. I definitely feel a little strange but not at all how I thought I would feel, still it is early days, still plenty of time for the nausea to take hold.
My nurse was called Alice and she was brilliant, very attentive and reassuring; it was a bit of a madhouse though, because of the holiday, a lot of appointments were stacked up, she tells me it will be much quieter next time.
One worrying development is that my hemoglobin continues to fall; they mentioned that I may need a transfusion soon; I'd rather not.
Anyway, not much else to say, feeling a bit icky now, heading for the couch. I'll pop back later with an update.
My nurse was called Alice and she was brilliant, very attentive and reassuring; it was a bit of a madhouse though, because of the holiday, a lot of appointments were stacked up, she tells me it will be much quieter next time.
One worrying development is that my hemoglobin continues to fall; they mentioned that I may need a transfusion soon; I'd rather not.
Anyway, not much else to say, feeling a bit icky now, heading for the couch. I'll pop back later with an update.
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