Hey, this carboplatin is a breeze! Whoo hoo! I am eating, only using half of the nausea drugs, and keeping everything down... yes, everything. I have yet to vomit since the introduction of the carboplatin into my system on Tuesday.
There have been 'hiccups'. But with the judicious application of that anti-psychotic novo-chlorpromazine, we seemed to have nipped that particularly ugly side effect in the bud.
One of the questions that immediately jumps to mind is 'why didn't they use this drug before?' Well, apparently it takes between 3 and 6 doses of carboplatin to have the same butt-kicking effect on the cancer cells that the cisplatin does. What they will do is give you three to six days of carboplatin in a row, which, by the end, you're not in much better shape than with the cisplatin, anyway. And you just know the cisplatin is that much stronger, potent and deadly 'cause they store and serve it in glass containers, while everything else we've noticed on the IV stands has been in plastic...
I am a little fatigued, maybe a bit dehydrated, and just a tiny bit deluded into thinking that I've got the outward manifestations of these damned therapies under control. Gail, good caregiver that she is, still makes me wear masks out in the great wide world, ensures that I am using the various creams, lotions and swishes, and is only just a bit bossy in doing any of it. Just a bit bossy, and somewhat pushy when it comes to the calorie count... I am starting my mornings with the "Plus" version of Ensure, followed almost immediately by two fried eggs and a glass of milk. Lunch (if I actually got out of bed to make 'lunch' a different time period) is a soup of some sort... Uncle Pete's chicken soup has been getting the most play so far this week. Evenings have been one or another chili, or the three potato casserole that Gail makes, or some of her fish pie. Between meals there is usually a yogurt or pudding cup on offer, and, of course, the ever present glass of milk. I still can't quite taste the sugars, but most of the savoury flavours are coming through. The chemo doctor, after a heavy sigh, did tell me that it could be 'many, many weeks' before the tastes are back to normal. Open cans of almost-room-temperature-and-slightly-stale soda water to cleanse the stickier saliva are strategically placed throughout the house.
Which reminds me... I haven't really pointed out that the thick saliva has pretty much subsided. Mornings (teeth brushing time) are the worst. But it really isn't getting in the way too much during the day. Add another 'whoo hoo' to the stack!
Thursday, March 27, 2008
Monday, March 24, 2008
Good news and so-so news...
The good news is that the blood tests conducted this morning show that the key indicator looked for has jumped from 0.9 to 2.9 in the last week!
The so-so news is that, based on careful consideration and discussion with the appropriate doctor, we have decided to go ahead with the last chemo therapy session. We gotta do everything we can that may make a positive difference. We will not be using the cisplatin, but a derivative that will not have nearly the negative effects on my digestive tract or hearing. Its called 'Carboplatin'. The documentation on the drug shows that it potentially has the same side effects as the cisplatin, but, as mentioned, the doctor assures us that the effects are minimal for most people.
So, tomorrow we go forward with the last chemo.
And, yes, I did order a new motorcycle.
The so-so news is that, based on careful consideration and discussion with the appropriate doctor, we have decided to go ahead with the last chemo therapy session. We gotta do everything we can that may make a positive difference. We will not be using the cisplatin, but a derivative that will not have nearly the negative effects on my digestive tract or hearing. Its called 'Carboplatin'. The documentation on the drug shows that it potentially has the same side effects as the cisplatin, but, as mentioned, the doctor assures us that the effects are minimal for most people.
So, tomorrow we go forward with the last chemo.
And, yes, I did order a new motorcycle.
Tuesday, March 18, 2008
Chemo; Delayed again!
Yes, my final chemo treatment has been delayed again. The doctor assures me its from no fault of mine, but is directly attributable to the cisplatin, the chemo drug. We talked last time about the blood count numbers, and how we went from a 2.2 to 2.0 to 1.5 and then 1.2 last week that forced the initial delay. Well, this week the count was down to 0.9! The good doctor did say that its not dangerous until 0.5.
Ya, but the delay is a bit depressing. My timelines are completely shot. I have no real idea what to expect from here on out.
The doctor suggested that they might just forget about the next course of chemo. She didn't offer any information/strategy for what they will do if the blood count is low and they still want to do the treatment, however. Are we looking at hospitalization? Or what? It won't break my heart if they decide to let the final chemo go... afterall, it was designed to be used in conjunction with the radiation therapy. Being this far beyond radiation may not be worth the effort. The chemo won't have anything to work with... The doctor is looking at all the options and we'll find on Easter Monday which option she thinks is best for me.
It is possible that I could be back to work before mid April. It is possible that I won't get back to work before the end of April.
I pointed out to Dr. Koski that my hearing is going a bit weird (the tinnitus that I mentioned before, and some definite frequency sensitivity loss), and she got quite concerned. If they do the next chemo, they will definitely change the cisplatin for something else. And yes, this particular form of chemotherapy drug can cause hearing nerve damage. But then again, so can the radiation therapy. We won't know for some time if the damage will reverse itself. This upsets me, a lot. I had brilliant hearing going in to this. I want that hearing back.
Other than that, my appetite is returning in gentle stages, although the tastebuds are still in disarray. My throat is healing from the effects of both the surgery and the radiation therapy, significantly reducing the sensitivity of the 'gag reflex'. Basically, I'm keeping down everything I can get down. The pain in my throat when I swallow is diminishing, almost on a daily basis. I am still losing weight, albeit at a much slower rate, largely because I am not maintaining the caloric intake. I need to start seriously rethinking the diet and monitoring my intake of calories and proteins.
I am alternating amongst anger, frustration and depression. I've determined that I need some significant retail therapy. There is no point in buying a boat this far from the ocean, or at least not this spring, and a small Wabumin sized boat just won't cut it. So, damn it, I'm going to buy a motorcycle.
Ya, but the delay is a bit depressing. My timelines are completely shot. I have no real idea what to expect from here on out.
The doctor suggested that they might just forget about the next course of chemo. She didn't offer any information/strategy for what they will do if the blood count is low and they still want to do the treatment, however. Are we looking at hospitalization? Or what? It won't break my heart if they decide to let the final chemo go... afterall, it was designed to be used in conjunction with the radiation therapy. Being this far beyond radiation may not be worth the effort. The chemo won't have anything to work with... The doctor is looking at all the options and we'll find on Easter Monday which option she thinks is best for me.
It is possible that I could be back to work before mid April. It is possible that I won't get back to work before the end of April.
I pointed out to Dr. Koski that my hearing is going a bit weird (the tinnitus that I mentioned before, and some definite frequency sensitivity loss), and she got quite concerned. If they do the next chemo, they will definitely change the cisplatin for something else. And yes, this particular form of chemotherapy drug can cause hearing nerve damage. But then again, so can the radiation therapy. We won't know for some time if the damage will reverse itself. This upsets me, a lot. I had brilliant hearing going in to this. I want that hearing back.
Other than that, my appetite is returning in gentle stages, although the tastebuds are still in disarray. My throat is healing from the effects of both the surgery and the radiation therapy, significantly reducing the sensitivity of the 'gag reflex'. Basically, I'm keeping down everything I can get down. The pain in my throat when I swallow is diminishing, almost on a daily basis. I am still losing weight, albeit at a much slower rate, largely because I am not maintaining the caloric intake. I need to start seriously rethinking the diet and monitoring my intake of calories and proteins.
I am alternating amongst anger, frustration and depression. I've determined that I need some significant retail therapy. There is no point in buying a boat this far from the ocean, or at least not this spring, and a small Wabumin sized boat just won't cut it. So, damn it, I'm going to buy a motorcycle.
Tuesday, March 11, 2008
Update: Radiation; DONE: Chemo; DELAYED
Today should have been the day that the final Cisplatin chemo dose was administered. Well, it didn't happen.
Yesterday, when they did the pre-treatment blood work, it was discovered that I have not come back far enough in my blood counts: I'm sitting at 1.2 and they really want me much closer to 2.0 (2.2 being where we were at the first chemo, but admittedly at only 1.5 when they did the second chemo treatment). It will come back... we just need time and some dietary help. When they normally give chemo, they work to a 21 day cycle that has a number of milestones built into it. For instance, they will assume that your immune system is at its lowest ebb between days 7 and 14. What this latest blood work shows is that after my last chemo, that 'day 14' stretched out much longer than expected.
The doctors will take more blood next Monday and determine if we can start the chemo on the following day. And yes, there is always some concern that you can't wait too long between chemo sessions. If my blood levels are not up to where they want them on Monday, I'm not really sure what they'll do.
The depressing part of this is that I won't be able to return to work on my timetable. I really wanted to be back by the first of April. Delaying the chem will delay the return to work. And then there is the sidebar issue of which doctor actually gets to say when I get to go back to work and what the rules are. My HR contact at my employer has pointed out that I don't get to choose; the doctor must. Oh, bloody hell.
But the good news is that the radiation therapy is now finished! WhooHoo! We are still treating for dehydration (I get a bag of fluids each morning for the rest of the week), but that really is minor. The inside of my mouth has some sores from the radiation, and I do have difficulty swallowing, but my appetite is definitely coming back. It may be all 'in my head', but at the beginning of this week, I started showing some interest in food, coincidental with this being the end of radiation? Or was it the end of the 21 day chemo cycle? P & A snuck a Wendy's burger in to Gail the other evening while I was dozing; not only could I smell it, I actually dreamt about it. Good sign, eh? I'm not eating a lot yet (I suspect my stomach has shrunken a bit). Desire to taste, to eat is the really important part of the puzzle. I've worked my way through chicken broth, chicken and rice soup (with wild rice that was a bit too much with that 'nutty' taste it has), and we've got a miso soup on standby. Stuff that I really want to try still tastes like old boots. And my throat is sooooo sore if I swallow just the wrong way. So we go with what we can, when we can. We're still not getting up to the caloric or protein counts that the team at the Cross wants, but we will work up to it. Patience... patience. Notice that I keep saying 'we'? That's because Gail is being really good at bullying me into trying this stuff. I made an oblique remark about Popsicles. She immediately ran out and got me real fruit flavoured DelMonte popsicles and a 'made-with-real-fruit' gelato/sorbet. Both taste absolutely atrocious. We probably should have just gone with the 'Popsicle' brand of frozen, coloured waters and left it at that. Just can't seem to win on all fronts at once...
We're planning an outing to 'Planet Organic' to investigate protein sources. I'm sure that they'll just love the pale blue protective safety mask I'll be wearing walking through the door... well, except that the stores do have the reputation for catering to the lunatic fringe, so maybe they're used to never seeing some of their patron's faces.
The thick saliva is still challenging, but not necessarily an overriding consideration. For some reason, my gag reflex seems to have calmed substantially, enabling me to keep far more food and meal replacements down. Again, is this part of the 21 day chemo cycle, or just general healing all around? And a friend of my father's suggested using Tonic Water (no gin!) for swishing/gargling to break down the saliva; damn, but it actually works. I shared this newer strategy with Dr. Jha... he'll get some other patients to try it out to see what happens. I will be much happier once the thick saliva stage goes away, if it does go away. Some patients get stuck with it forever. Now, won't that compromise my presentations! I'm sure my employers are going to be really happy with a case of Tonic water stored under my desk, or the bottle of Tonic water on the meeting room table when visiting client sites.
Yesterday, when they did the pre-treatment blood work, it was discovered that I have not come back far enough in my blood counts: I'm sitting at 1.2 and they really want me much closer to 2.0 (2.2 being where we were at the first chemo, but admittedly at only 1.5 when they did the second chemo treatment). It will come back... we just need time and some dietary help. When they normally give chemo, they work to a 21 day cycle that has a number of milestones built into it. For instance, they will assume that your immune system is at its lowest ebb between days 7 and 14. What this latest blood work shows is that after my last chemo, that 'day 14' stretched out much longer than expected.
The doctors will take more blood next Monday and determine if we can start the chemo on the following day. And yes, there is always some concern that you can't wait too long between chemo sessions. If my blood levels are not up to where they want them on Monday, I'm not really sure what they'll do.
The depressing part of this is that I won't be able to return to work on my timetable. I really wanted to be back by the first of April. Delaying the chem will delay the return to work. And then there is the sidebar issue of which doctor actually gets to say when I get to go back to work and what the rules are. My HR contact at my employer has pointed out that I don't get to choose; the doctor must. Oh, bloody hell.
But the good news is that the radiation therapy is now finished! WhooHoo! We are still treating for dehydration (I get a bag of fluids each morning for the rest of the week), but that really is minor. The inside of my mouth has some sores from the radiation, and I do have difficulty swallowing, but my appetite is definitely coming back. It may be all 'in my head', but at the beginning of this week, I started showing some interest in food, coincidental with this being the end of radiation? Or was it the end of the 21 day chemo cycle? P & A snuck a Wendy's burger in to Gail the other evening while I was dozing; not only could I smell it, I actually dreamt about it. Good sign, eh? I'm not eating a lot yet (I suspect my stomach has shrunken a bit). Desire to taste, to eat is the really important part of the puzzle. I've worked my way through chicken broth, chicken and rice soup (with wild rice that was a bit too much with that 'nutty' taste it has), and we've got a miso soup on standby. Stuff that I really want to try still tastes like old boots. And my throat is sooooo sore if I swallow just the wrong way. So we go with what we can, when we can. We're still not getting up to the caloric or protein counts that the team at the Cross wants, but we will work up to it. Patience... patience. Notice that I keep saying 'we'? That's because Gail is being really good at bullying me into trying this stuff. I made an oblique remark about Popsicles. She immediately ran out and got me real fruit flavoured DelMonte popsicles and a 'made-with-real-fruit' gelato/sorbet. Both taste absolutely atrocious. We probably should have just gone with the 'Popsicle' brand of frozen, coloured waters and left it at that. Just can't seem to win on all fronts at once...
We're planning an outing to 'Planet Organic' to investigate protein sources. I'm sure that they'll just love the pale blue protective safety mask I'll be wearing walking through the door... well, except that the stores do have the reputation for catering to the lunatic fringe, so maybe they're used to never seeing some of their patron's faces.
The thick saliva is still challenging, but not necessarily an overriding consideration. For some reason, my gag reflex seems to have calmed substantially, enabling me to keep far more food and meal replacements down. Again, is this part of the 21 day chemo cycle, or just general healing all around? And a friend of my father's suggested using Tonic Water (no gin!) for swishing/gargling to break down the saliva; damn, but it actually works. I shared this newer strategy with Dr. Jha... he'll get some other patients to try it out to see what happens. I will be much happier once the thick saliva stage goes away, if it does go away. Some patients get stuck with it forever. Now, won't that compromise my presentations! I'm sure my employers are going to be really happy with a case of Tonic water stored under my desk, or the bottle of Tonic water on the meeting room table when visiting client sites.
Thursday, March 06, 2008
Nearly there...
I really do have to say that the last few weeks feels like running a marathon unprepared. I am tired, weak, sloughing off the pounds and, as of Monday of this week, was pronounced 'dehydrated'.
Eating is not the first thing on my personal agenda, but it would appear that weight gain is at the top of my caregivers' list. Now, to be fair, I haven't tried any proper food in over a week, but have restricted my intake to Ensure, Boost and variations on a theme. There may actually be some taste sensation coming back but I wouldn't really know, because I haven't tested it. Maybe I will try some sweet and salty tidbit a bit later... What is inhibiting my eating at the moment is a complete and utter disinterest. I am still vomiting occasionally, and usually because the heavy, sticky saliva (part of the result of the saliva gland transplant) that I am producing triggers my gag reflex. Swishing my mouth with club soda, or a mixture of water and baking soda does help break down the saliva, but the gargling is a very fine balancing act that can end up with me in the bathroom... not a lot of fun.
One of the things that I noticed, and that kinda scared me, was that one of my extended visits to the bathroom, complete with the loss of an Ensure, felt oddly comforting. Losing the milky Ensure is so much nicer than the 'dry heaves' that I often induce trying to brush my teeth, or when I screw up the delicate balance during gargling. In fact, it was almost 'soothing' to the esophagus. I wonder if, on one level, those who suffer from bulimia, take comfort in the very act of vomiting, rather than just the significance of the purge?
The attempts to rehydrate me seem to be going well. Immediately after the daily radiation treatment, we trot down the hall to where a nurse is waiting to plug me into a slow drip of fluids (laced with potassium and other goodies). Normally, I just lay there, daydreaming, listening to my iPod, and then drift away for small snatches of time. Poor Gail paces, tries to knit, tries to read...
After tomorrow's session, the good doctor wants to 'reevaluate' my position. I am actually going to suggest that we keep up the re-hydration through the first few days of the next chemo, which starts on Tuesday.
slight change to the scorecard: Two more radiation sessions (Friday and Monday)
One more chemo, starting Tuesday.
We're almost done! I may be optimistic, but if all goes well, April 1st should be really good day! We need to heal the mouth, and recover from the side effects of the chemo, but, it just feels like we're going to be in good shape.
Eating is not the first thing on my personal agenda, but it would appear that weight gain is at the top of my caregivers' list. Now, to be fair, I haven't tried any proper food in over a week, but have restricted my intake to Ensure, Boost and variations on a theme. There may actually be some taste sensation coming back but I wouldn't really know, because I haven't tested it. Maybe I will try some sweet and salty tidbit a bit later... What is inhibiting my eating at the moment is a complete and utter disinterest. I am still vomiting occasionally, and usually because the heavy, sticky saliva (part of the result of the saliva gland transplant) that I am producing triggers my gag reflex. Swishing my mouth with club soda, or a mixture of water and baking soda does help break down the saliva, but the gargling is a very fine balancing act that can end up with me in the bathroom... not a lot of fun.
One of the things that I noticed, and that kinda scared me, was that one of my extended visits to the bathroom, complete with the loss of an Ensure, felt oddly comforting. Losing the milky Ensure is so much nicer than the 'dry heaves' that I often induce trying to brush my teeth, or when I screw up the delicate balance during gargling. In fact, it was almost 'soothing' to the esophagus. I wonder if, on one level, those who suffer from bulimia, take comfort in the very act of vomiting, rather than just the significance of the purge?
The attempts to rehydrate me seem to be going well. Immediately after the daily radiation treatment, we trot down the hall to where a nurse is waiting to plug me into a slow drip of fluids (laced with potassium and other goodies). Normally, I just lay there, daydreaming, listening to my iPod, and then drift away for small snatches of time. Poor Gail paces, tries to knit, tries to read...
After tomorrow's session, the good doctor wants to 'reevaluate' my position. I am actually going to suggest that we keep up the re-hydration through the first few days of the next chemo, which starts on Tuesday.
slight change to the scorecard: Two more radiation sessions (Friday and Monday)
One more chemo, starting Tuesday.
We're almost done! I may be optimistic, but if all goes well, April 1st should be really good day! We need to heal the mouth, and recover from the side effects of the chemo, but, it just feels like we're going to be in good shape.
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