I was just watching a movie in which a person was dying of cancer. And a big part of how they indicated this was that the poor man was laying in bed, and on the side table next two him were four portentous prescription bottles of pills. They took up quite a bit of space on that little table, and were in sharp focus, so you could tell the guy was really, really sick.
Um.
I'm laying in bed at the moment, and snuggled up next to me is a large plastic shoebox, filled to the top with bottles and boxes of various medications. On the chair next to the bed are two more shoeboxes, each about half full of bottles and boxes of various pills, powders, liquids, creams, and random medical equipment. Also there is a large brown paper grocery bag, full of boxes of pre-filled syringes.
The regular stuff is, of course, in the medicine cabinet. And then there's wherever it is that my husband is storing the medications for his heart, thyroid, diabetes, and eyes.
Before I had cancer, I took the occasional allergy pill, and sometimes I took some ibuprofen for cramps. That was about it. Well, I used deodorant and toothpaste, too. But I wasn't big on medications; not because of a particular moral objection, but because they just don't work that well for me, and they always cause nasty side effects. So I stayed away from them as much as possible.
Cancer changes all that. And the ironic thing is that most of the meds you end up with are not treatments for the cancer... nope, most of it is stuff you take to try to deal with the treatments for the cancer, and what you take to try to deal with the stuff you take to try to deal with the treatments for the cancer. And it just keeps adding up, a huge avalanche of little bottles and boxes that bury you (in nearly every sense of 'bury' you can think of, including the final and permanent state).
So I suppose it's a good thing that I'm not a Hollywood Director. Because if I were, there wouldn't be a touching scene of reunion where the doting relative runs into a sunlit room and embraces her dying loved one, then sits on the side of the bed, holding hands and exchanging confidences. Nope. In my movie, the doting relative runs into a dimly lit room and frantically digs through mountains of plastic bottles and cardboard boxes, from which can dimly be heard muffled requests for help in finding the Really Good Laxative...
... and Cut.
2/14/12
2/13/12
Brief Brief
For some reason I've been very busy doing not very much. So I don't have a lot to report, but here is what there is:
My strength and pain levels seem to be very much an up and down sort of deal. So I've visited my folks a couple times, gone to the movies with my son and his fiance once, gone to the doctor for a checkup three times (once each doctor - GP, Palliative Specialist, Oncologist), and that's about it.
My appetite varies quite a bit from day to day, but the general trend is vaguely positive. Still, I am losing weight, which makes Dr. Bouncy unhappy. I'm trying.
I've been grateful for the weird lack of snow and ice this winter - the last thing I need is to deal with slipping and falling at this point.
I've been upset with my lack of a wheelchair lift for my van. Unfortunately, private insurance does not help with such things as wheelchair ramps and lifts, or other durable equipment. I would be getting out more if I were able to zip around in my chair. Grrrr.
I've been expending most of my energy at home in repelling my cat's creative and sneaky attempts to settle herself on either my stomach or my left leg. Evidently the areas that are most painful and inconvenient to me are the most appealing to her, and hers is a very persistant sort of personality. After six weeks or so, she is just starting to surrender... by which I mean that when I am awake and have thrown her off a few times, she will curl up on my shoulder or arm until I drift off to sleep, at which point she will make another attempt at the Forbidden Zones.
Although my leg and lung strength are not good, my arm strength is improving. Clearly the cat is not having my appetite issues; she evidently is eating lead weights for dinner. I should hide her under my shirt when I get weighed at the doctor's office - Dr. Bouncy would be ecstatic.
My granddaughter has decided to take the earlier generations as role models, and will evidently be making a suitably tardy appearance, much to her parents' dismay. I will announce her arrival when she decides she's good and ready. If she takes after her father, I would recommend bribery. If she takes after her paternal grandmother, I would recommend good quality chocolate.
My strength and pain levels seem to be very much an up and down sort of deal. So I've visited my folks a couple times, gone to the movies with my son and his fiance once, gone to the doctor for a checkup three times (once each doctor - GP, Palliative Specialist, Oncologist), and that's about it.
My appetite varies quite a bit from day to day, but the general trend is vaguely positive. Still, I am losing weight, which makes Dr. Bouncy unhappy. I'm trying.
I've been grateful for the weird lack of snow and ice this winter - the last thing I need is to deal with slipping and falling at this point.
I've been upset with my lack of a wheelchair lift for my van. Unfortunately, private insurance does not help with such things as wheelchair ramps and lifts, or other durable equipment. I would be getting out more if I were able to zip around in my chair. Grrrr.
I've been expending most of my energy at home in repelling my cat's creative and sneaky attempts to settle herself on either my stomach or my left leg. Evidently the areas that are most painful and inconvenient to me are the most appealing to her, and hers is a very persistant sort of personality. After six weeks or so, she is just starting to surrender... by which I mean that when I am awake and have thrown her off a few times, she will curl up on my shoulder or arm until I drift off to sleep, at which point she will make another attempt at the Forbidden Zones.
Although my leg and lung strength are not good, my arm strength is improving. Clearly the cat is not having my appetite issues; she evidently is eating lead weights for dinner. I should hide her under my shirt when I get weighed at the doctor's office - Dr. Bouncy would be ecstatic.
My granddaughter has decided to take the earlier generations as role models, and will evidently be making a suitably tardy appearance, much to her parents' dismay. I will announce her arrival when she decides she's good and ready. If she takes after her father, I would recommend bribery. If she takes after her paternal grandmother, I would recommend good quality chocolate.
Labels:
What Is Happening?
2/1/12
Gratitude
I want to thank all the wonderful people who have been leaving comments on my posts here - you have all been very kind, and your words have often brought me a great deal of comfort in times when comfort is a rare and valuable commodity. I am more grateful than words can express.
Labels:
Thoughts and Feelings
1/26/12
I've Learned... Not So Much
Some people slip from this mortal coil with little warning. Others of us get some inkling that the end is near, and theoretically that means that we have time to prepare ourselves and our loved ones for our inevitable passing.
So what have I done with the past three years?
I'm not entirely sure.
There are still so many things I need to do - things to knit, things to write, things to organize - and so little time and energy with which to do them. I know it's going to be impossible to do everything I want to do, and that is so frustrating. I'm pretty realistic about my situation, I think, but that doesn't mean that I'm ready to go. I wonder if anyone ever is?
I'm afraid that I haven't learned as much as I should have about people and life and even about myself in the five decades I've been here - I feel as though I should be wiser than I am, and better prepared.
I shouldn't be as worried as I am about other people, I should have more faith that things will work out. I shouldn't be as impatient with youthful foibles as I am - after all, most of us do survive the mistakes we made as youngsters, and growing up will happen with or without my interference or assistance.
I shouldn't be sweating the small stuff at this point in my life. I shouldn't get so irritated when people don't know what to say, so they say stupid stuff ("well, you LOOK good...") I shouldn't get so confused when people say things probably meant to be complimentary ("you are such an amazing/strong/fierce fighter..." - what does that mean?) and instead just enjoy the fact that they care enough about me to say something nice. I should remember to compliment others more often, to let people know how much I appreciate them and love them.
I should have a better idea of what life is all about. You would think that with several years' warning, I'd have had time to figure all this out, but I don't think I've used the time correctly, or something, because I don't feel that I'm any wiser or better a person than I was four years ago.
What is the likelihood that I will close this huge gap in wisdom and accomplishment in a few short months, when I haven't done so in the last few years?
Which means that I will go out pretty much in the same state that I came in... wrinkled, unevenly developed, flawed, and human.
Rats.
Labels:
Thoughts and Feelings
1/19/12
Latest
Well, it was a pretty darned demoralizing visit with Dr. Bouncy today.
We looked at my just-pre-Leg-Explosion scans.
For one thing, we saw why Dr. B said that ablation was not an option for the pelvis/hip tumor. It is not a nice tame sphere of haywire cells. It is a Blob Of Evil that wraps pretty much around and through the entire pelvic and femur area. It has destroyed most of the bone, and is strangling everything else around it, including blood flow - thus the Amazing Expandable Leg. And it is growing at breakneck speed, to the point where I can feel the difference between how it is one day and how it is two days later.
My guess is that although some of the other tumors were responding mildly to some of the chemo treatments, that tumor was busily wrapping itself around me, unchecked.
Ugh.
I was told earlier about the rib tumor that is expanding itself into the top section of my lung. But it turns out I also have an independent tumor in my liver.
Which is the first of what is likely to be many. Fairly soon, if this last treatment doesn't work.
Prognosis is not good. This was illustrated by the fact that Dr. Bouncy not only didn't conspicuously avoid the whole End Of Life/Hospice Care conversation - he initiated it.
So if this treatment works better than the others, I'll have some months ahead. Probably not a year. If it doesn't - well, of course nobody can say for certain, but we can probably count the weeks pretty easily.
Not what we wanted to hear, even though we were fairly certain of the likely report long before we entered the office.
There are a lot of practical decisions and work that are going to need doing in the next few weeks.
No rest for the wicked, I guess...
We looked at my just-pre-Leg-Explosion scans.
For one thing, we saw why Dr. B said that ablation was not an option for the pelvis/hip tumor. It is not a nice tame sphere of haywire cells. It is a Blob Of Evil that wraps pretty much around and through the entire pelvic and femur area. It has destroyed most of the bone, and is strangling everything else around it, including blood flow - thus the Amazing Expandable Leg. And it is growing at breakneck speed, to the point where I can feel the difference between how it is one day and how it is two days later.
My guess is that although some of the other tumors were responding mildly to some of the chemo treatments, that tumor was busily wrapping itself around me, unchecked.
Ugh.
I was told earlier about the rib tumor that is expanding itself into the top section of my lung. But it turns out I also have an independent tumor in my liver.
Which is the first of what is likely to be many. Fairly soon, if this last treatment doesn't work.
Prognosis is not good. This was illustrated by the fact that Dr. Bouncy not only didn't conspicuously avoid the whole End Of Life/Hospice Care conversation - he initiated it.
So if this treatment works better than the others, I'll have some months ahead. Probably not a year. If it doesn't - well, of course nobody can say for certain, but we can probably count the weeks pretty easily.
Not what we wanted to hear, even though we were fairly certain of the likely report long before we entered the office.
There are a lot of practical decisions and work that are going to need doing in the next few weeks.
No rest for the wicked, I guess...
Labels:
What Is Happening?
1/12/12
Newest Info
**Newest info: No pneumonia, but multiple clots in my lungs, some fluid in my lungs, my heart may be under too much stress, I have a large but relatively new tumor coming out of my rib and protruding right through/into my left lung, my hemoglobin is too low, as is my potassium. I'm having a lot of trouble eating much of anything - I'll have to talk to the nutrition folks at the hospital to see if they can bring something very small every two hours, rather than a bigger meal every five. Not that I'm likely to eat much of that, either (not a big fan of the company that provides the hospital food here, I'm afraid).
The coumadin may not be thinning my blood adequately, so I'll be either combining it with another thinner that must be injected into my stomach every day (which means I'll have to do it myself... yeah, that'll be great...) or doing just the injected one.
I'll be in the hospital for at least two more days, maybe more. They'll want to feel comfortable that I'm not throwing more clots and that I'm unlikely to make more.
My bone marrow isn't up to the job of making more cells, so I may need to start having blood infusions. New chemo routine, so we'll see if that helps. This one will be my last 'reasonable' resort - after this, it's more extreme drugs with less record of success, when the more normally successful ones have already failed. So... you know.
**Much of this post is copied from my latest Facebook update - energy is not easy to come by, so I'm conserving where I can. Sorry about that...
Labels:
What Is Happening?,
Whinging
1/11/12
They Just Can't Get Enough Of Me...
Two glorious days of uninterrupted laying in my own comfy bed... and now I'm back in the hospital, with pneumonia and who knows what.
Yeah, they just can't get enough of me.
We counted, and I was off the LDN for 9 days before all this crud started happening. I'm just saying...
Anyway, it's going to be another two or more days of cable television, I guess. Yay?
Note: No, Sam, not all hospitals in the US serve decent food. The nurses here are nearly as sweet as the ones in Rapid City, and the rooms are nearly as nice, but the food is mostly inedible. Scott occasionally sneaks in a sandwich for me, bless his heart.* Thank goodness for family support!
*I've been eating very little for a week, and my weight has gone slightly up. I think this is due to the methadone, and worry that this is going to be a problem once I start eating reasonably again. Argh!!!
Yeah, they just can't get enough of me.
We counted, and I was off the LDN for 9 days before all this crud started happening. I'm just saying...
Anyway, it's going to be another two or more days of cable television, I guess. Yay?
Note: No, Sam, not all hospitals in the US serve decent food. The nurses here are nearly as sweet as the ones in Rapid City, and the rooms are nearly as nice, but the food is mostly inedible. Scott occasionally sneaks in a sandwich for me, bless his heart.* Thank goodness for family support!
*I've been eating very little for a week, and my weight has gone slightly up. I think this is due to the methadone, and worry that this is going to be a problem once I start eating reasonably again. Argh!!!
Labels:
What Is Happening?
1/5/12
Partly Exciting, Mostly Boring
The big news is that I am posting this from the hospital.
On Monday morning we went to the movies with our son and his fiance - the new Sherlock Holmes movie, which we would give a mixed review, I'll alert you if son does a review on it - and when I got up from the chair after a rather uncomfortable two hours, I discovered that my left leg was considerably wider than my right leg.
We all went to lunch and played one of the extended versions of Pandemic, which was fun (we won, after a depressingly long run of losing the world's population - curse you, black plague!!). When we got home, the leg was about twice the size it should be, so I called the on-call person at my oncologist's office.
Unfortunately, I got The Jerk (I've gotten him before - he refuses to give information or advice, which makes him pretty much useless). As usual, he just asked me what I wanted to do, and told me I could try a dose of lasix if I thought it might help. Yeah, thanks, that really was useful.
Anyway, I took the diuretic, and two hours later nothing had changed. I called the pharmacist, who told me that the lasix should have hit peak usefulness at 1-1.5 hours after dosing. I called the on-call line again, and this time got a doctor who actually cared. She recommended a second dose, but told me to call back if the pain or swelling got worse, or if an area became inflamed.
I took a second dose and went to bed. At 4am the pain became more localized to my inner thigh and groin, and was definitely worse. I called the on-call gal again, and she told me to get to the ER, to tell them to give me an ultrasound, and then to have her paged with the results asap.
So off we went to the ER - St. Joseph's has a wonderful ER, so that's the hospital we went to, rather than the one attached to my Oncologist's office.
Turns out I have a giant blood clot, from my groin to my knee. And of course, with my usual pattern of drug reactions, the drugs are not working as they should, and I'm getting unusual side effects. Faux expressions of surprise, anyone?
So here I am, in the hospital, bored to tears and pretty much immobilized. My big hope for the near future is that they will let me walk to the bathroom instead of having to use the commode - but my leg seems to be getting worse, pain-wise, so I'm not sure they'll let me wander across the entire room like that.
If anyone is interested, I'm at St. Joseph's Hospital in downtown St. Paul, and it looks like I will be here until at least Saturday (first they said Thursday, but my blood is not cooperating).
The clot evidently is being caused by the cancer. This is evidently not unusual, but it is depressing, since it is a sign of the advanced state of my tumors. Which brings me to the other news:
My scan results are back. I have had a significant progression, with more active and larger existing tumors and several new ones added. This is not surprising news, really, but it is depressing. We're running out of treatment options, and remaining options are less likely to be effective than the ones we've tried (which means Pretty Much Useless) and more likely to have really unpleasant side effects.
So. I'll report on my 'What Now?' conversation with Dr. Bouncy when I have it - I was supposed to be at his office today, but obviously that's not going to happen now. I am hoping that either he will call me here, or that we can have that talk next week when I am done with my hospital stay; I'd like to make the decisions and start my next treatment asap, since the cancer has pretty much been growing unchecked for two months.
What's with the holiday season always coming with bad health news? Diagnosis, progressions, they all seem to come at that time of year. I'm not liking that pattern...
*Sigh...*
On Monday morning we went to the movies with our son and his fiance - the new Sherlock Holmes movie, which we would give a mixed review, I'll alert you if son does a review on it - and when I got up from the chair after a rather uncomfortable two hours, I discovered that my left leg was considerably wider than my right leg.
We all went to lunch and played one of the extended versions of Pandemic, which was fun (we won, after a depressingly long run of losing the world's population - curse you, black plague!!). When we got home, the leg was about twice the size it should be, so I called the on-call person at my oncologist's office.
Unfortunately, I got The Jerk (I've gotten him before - he refuses to give information or advice, which makes him pretty much useless). As usual, he just asked me what I wanted to do, and told me I could try a dose of lasix if I thought it might help. Yeah, thanks, that really was useful.
Anyway, I took the diuretic, and two hours later nothing had changed. I called the pharmacist, who told me that the lasix should have hit peak usefulness at 1-1.5 hours after dosing. I called the on-call line again, and this time got a doctor who actually cared. She recommended a second dose, but told me to call back if the pain or swelling got worse, or if an area became inflamed.
I took a second dose and went to bed. At 4am the pain became more localized to my inner thigh and groin, and was definitely worse. I called the on-call gal again, and she told me to get to the ER, to tell them to give me an ultrasound, and then to have her paged with the results asap.
So off we went to the ER - St. Joseph's has a wonderful ER, so that's the hospital we went to, rather than the one attached to my Oncologist's office.
Turns out I have a giant blood clot, from my groin to my knee. And of course, with my usual pattern of drug reactions, the drugs are not working as they should, and I'm getting unusual side effects. Faux expressions of surprise, anyone?
So here I am, in the hospital, bored to tears and pretty much immobilized. My big hope for the near future is that they will let me walk to the bathroom instead of having to use the commode - but my leg seems to be getting worse, pain-wise, so I'm not sure they'll let me wander across the entire room like that.
If anyone is interested, I'm at St. Joseph's Hospital in downtown St. Paul, and it looks like I will be here until at least Saturday (first they said Thursday, but my blood is not cooperating).
The clot evidently is being caused by the cancer. This is evidently not unusual, but it is depressing, since it is a sign of the advanced state of my tumors. Which brings me to the other news:
My scan results are back. I have had a significant progression, with more active and larger existing tumors and several new ones added. This is not surprising news, really, but it is depressing. We're running out of treatment options, and remaining options are less likely to be effective than the ones we've tried (which means Pretty Much Useless) and more likely to have really unpleasant side effects.
So. I'll report on my 'What Now?' conversation with Dr. Bouncy when I have it - I was supposed to be at his office today, but obviously that's not going to happen now. I am hoping that either he will call me here, or that we can have that talk next week when I am done with my hospital stay; I'd like to make the decisions and start my next treatment asap, since the cancer has pretty much been growing unchecked for two months.
What's with the holiday season always coming with bad health news? Diagnosis, progressions, they all seem to come at that time of year. I'm not liking that pattern...
*Sigh...*
Labels:
What Is Happening?
1/1/12
Old Year, New Year...
It's been a while, so I'll catch you up.
After the first month of Xeloda, which has ramped up the pain margin considerably, my tumor markers went up. But Dr. Bouncy says that Xeloda sometimes takes a while to kick in, so he wanted me to continue for another month. With some reluctance, I agreed; in one hand, giving the tumors more time to grow unchecked is really scary when they are at the level they are at with me - on the other hand, my treatment options are rapidly running out, so we have to give any reasonable possibility the old college try.
So this past week I had a tumor marker check, a PET/CT scan, and an MRI scan (to check up on that pesky softball-sized soft tissue tumor in my left pelvis, which I think has adhesions and is a constant source of tearing pain). I've never had serious pain with the scans before, but the CT scan was an agony this time. I really thought I wasn't going to make it to the end without moving, and frankly I was just short of tears by the time they let me out. On the bright side, that made the MRI seem less awful than it would have been otherwise - it was painful, but since they let you know how many minutes each scan was going to take, I could sort of count it down. When you don't have a sense of time passing, pain can seem overwhelming; when you know you only have to bear it for another three minutes, you can talk yourself through it.
I won't know how the scans turn out until next Thursday, when I see Dr. Bouncy and make plans for the immediate future. I can potentially find out the results of the tumor marker test on Tuesday - I'm not sure whether I will ask or not. There are times when knowing the answer IS worse than not knowing for sure...
The other health-related issue is that for a couple months now the pain in my hip has become more and more debilitating, to the point where for weeks I was getting less than two hours of sleep per day. Often none at all. Added to this, I became nearly completely bed-bound. Between the exhaustion and the pain, I could no longer put off the inevitable - I quit the LDN and went to the palliative care clinic, where they prescribed narcotics.
As expected, I currently am getting more side effects than benefit... but I am getting a bit more sleep, which at least keeps me strong enough to avoid indulging in distressing crying jags during the wee small hours of the night (hard on me, since it deregulates an already weak breathing system, and scary for poor Scott - I'm not generally a crier, so he correctly interprets the sudden change as a major issue).
On the bright side, Christmas was family-filled and everything that Christmas should be. I am unbelievably grateful for my kind, loving, supportive (and talented!) family and friends. If one has to be in pain, you couldn't ask for better distractions.
More later...
After the first month of Xeloda, which has ramped up the pain margin considerably, my tumor markers went up. But Dr. Bouncy says that Xeloda sometimes takes a while to kick in, so he wanted me to continue for another month. With some reluctance, I agreed; in one hand, giving the tumors more time to grow unchecked is really scary when they are at the level they are at with me - on the other hand, my treatment options are rapidly running out, so we have to give any reasonable possibility the old college try.
So this past week I had a tumor marker check, a PET/CT scan, and an MRI scan (to check up on that pesky softball-sized soft tissue tumor in my left pelvis, which I think has adhesions and is a constant source of tearing pain). I've never had serious pain with the scans before, but the CT scan was an agony this time. I really thought I wasn't going to make it to the end without moving, and frankly I was just short of tears by the time they let me out. On the bright side, that made the MRI seem less awful than it would have been otherwise - it was painful, but since they let you know how many minutes each scan was going to take, I could sort of count it down. When you don't have a sense of time passing, pain can seem overwhelming; when you know you only have to bear it for another three minutes, you can talk yourself through it.
I won't know how the scans turn out until next Thursday, when I see Dr. Bouncy and make plans for the immediate future. I can potentially find out the results of the tumor marker test on Tuesday - I'm not sure whether I will ask or not. There are times when knowing the answer IS worse than not knowing for sure...
The other health-related issue is that for a couple months now the pain in my hip has become more and more debilitating, to the point where for weeks I was getting less than two hours of sleep per day. Often none at all. Added to this, I became nearly completely bed-bound. Between the exhaustion and the pain, I could no longer put off the inevitable - I quit the LDN and went to the palliative care clinic, where they prescribed narcotics.
As expected, I currently am getting more side effects than benefit... but I am getting a bit more sleep, which at least keeps me strong enough to avoid indulging in distressing crying jags during the wee small hours of the night (hard on me, since it deregulates an already weak breathing system, and scary for poor Scott - I'm not generally a crier, so he correctly interprets the sudden change as a major issue).
On the bright side, Christmas was family-filled and everything that Christmas should be. I am unbelievably grateful for my kind, loving, supportive (and talented!) family and friends. If one has to be in pain, you couldn't ask for better distractions.
More later...
Labels:
Thoughts and Feelings,
What Is Happening?
12/2/11
Xeloda, Week 4
It's my fourth week on the Xeloda: 3,000mg, which is 3 pills twice a day, on a 7 Days On/7Days Off schedule.
The side effects have not been good for me, which is not surprising. Extreme fatigue, muscle weakness, heartburn, diarrhea, abdominal discomfort, numbness and tingling and a feeling like splinters in my feet and fingers... and worst of all for me, extreme joint pain in my hips and left leg, plus back pain and muscle cramping.
This is bad, but I count pain (even the debilitating sort, which this is - I'm nearly housebound the entire time, and pretty much w-bound for a good amount of time) as less awful than depression, so at the moment I prefer this to the Gemzar, all things being equal. But that equality thing turns out to be a significant issue.
Unfortunately, I just found out that my recent tumor markers showed a fairly significant rise - around 20%. Not entirely a surprise, since the little tumor in my chest wall is showing up again, and it seems to be a pretty reliable reflection of what is going on elsewhere in my body. But definitely not what I wanted to hear.
Not what Dr. Bouncy wanted to hear, either - during my exam on Tuesday he insisted that he didn't think I was right about that little tumor, he thought it was the same size as before. But I am more sensitive to subtle changes, since I live with the stupid thing. As he said again while reporting on this latest result today, I know what I'm talking about when it comes to what's going on in my body. We just generally wish this was not the case, since my reports and prognostications are usually on the gloomy side.
Not what Dr. Bouncy wanted to hear, either - during my exam on Tuesday he insisted that he didn't think I was right about that little tumor, he thought it was the same size as before. But I am more sensitive to subtle changes, since I live with the stupid thing. As he said again while reporting on this latest result today, I know what I'm talking about when it comes to what's going on in my body. We just generally wish this was not the case, since my reports and prognostications are usually on the gloomy side.
That said, he wants to give the Xeloda more time to work. Evidently it can sometimes cause tumor flare before it brings things down, and sometimes it just plain takes a while to kick in. I will be having another marker test and a couple scans (CT/PET/MRI) at the beginning of January, so he wants to see how things look then before making a decision to go back to the dreaded Gemzar (and accompanying steroids, Benadryl, etc).
This is very disheartening. Well, terrifying, really - when your tumor load is heavy, even small increases are significant, and when your cancer is agressive you don't like to give it time to grow with failing treatments. Especially treatments that pretty much take away your quality of life while they are (possibly) doing nothing to stop the Monster.
I was hoping to take an extra week off the Xeloda around Christmas. Before we knew about the rise in markers, Dr. Bouncy didn't think this would be a problem. Now I'm not so sure... but oh, I don't want to feel sick and be in pain during Christmas week.
I have a nurse appointment on the 13th, I'll have her ask Dr. Bouncy about it again at that point, see what he thinks.
I was hoping to take an extra week off the Xeloda around Christmas. Before we knew about the rise in markers, Dr. Bouncy didn't think this would be a problem. Now I'm not so sure... but oh, I don't want to feel sick and be in pain during Christmas week.
I have a nurse appointment on the 13th, I'll have her ask Dr. Bouncy about it again at that point, see what he thinks.
Damn.
Labels:
Thoughts and Feelings,
What Is Happening?,
Whinging
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