Well, I think the latest treatment worked for a few weeks, but it's fairly clear that it was a very short reprieve, indeed. The hip pain has been ratcheting up in the last two weeks, I'm losing appetite and weight fairly rapidly, and today has been very bad health-wise... pain, a feeling of the hip tumor being much more noticeable (larger), and fairly extreme weakness.
The bad symptoms seem to be increasing very quickly, which is scary. I'm grateful to have been able to see my granddaughter born, but I have to admit that I'd like to be around long enough for her to become more of an interacting human being (it's hard to interact with someone who seems determined to stay asleep during our entire time together...), I'd like to get to know her as a person. It seems too much to ask to be here long enough for her to know and remember me, but still...
This last few months have certainly been a roller coaster of ups and downs. I can only hope that this is a temporary dip, and that it is possible that I have a few more ups left in me. I will, of course, keep reporting as we go, but I must say it's been a very discouraging week. Please send all the positive energy, prayers, etc. that you can - I need all the help I can get.
2/26/12
2/23/12
Gratitude, Thank Goodness
I have things to complain about, I suppose, but I am also incredibly grateful for many blessings. Most recently, of course, I am grateful for my beautiful granddaughter, and for her sweet and loving parents. And I give thanks daily and repeatedly for my supportive family - my parents and sister, my siblings-by-marriage and darling mother-in-law, my cousins and aunt and uncle, all of whom have kept me going when I otherwise would have fallen and given up. And nobody could ask for better friends, both near and far (you know who you are)... I depend on you, and you never let me down.
But right now I want to acknowledge the support and kindness that I and my wonderful husband (who I cannot thank enough, or live without) have gotten from all the folks at Ameriprise Financial. From the beginning we have been surrounded by the thoughtful friendship of co-workers, the kindness and understanding of managers, and the supportive assistance of the human resources staff. It's been a tough journey, but you have made it doable.
And quite frankly, although financial resources cannot help but be strained by the unbelievable expenses of fighting a losing battle with this horrible disease, we would have found ourselves homeless and broken without the excellent benefits package that Ameriprise provides its employees.
When our son was born with serious health issues, my husband was working two backbreaking full-time jobs, and yet he had no health benefits, no paid holiday or family leave, no insurance. Than, and later when my husband was injured and unable to work for an extended period, we would have lost our home and ended up on the streets if I hadn't at the time had a retirement savings to liquidate. Even so, because of those circumstances, we found ourselves in a financial hole that we still had not entirely escaped at the time I was diagnosed. If Scott was still working in the food service industry, I would never have had access to the health care services that have been essential in the last few years. We would not still be living in our own home. Scott would not have been able to have the surgery last year that narrowly prevented a massive heart attack. I probably would not have lived long enough to hold my granddaughter in my arms.
As hard as this journey has been, it could have been so much harder. And it is so much harder, for the countless folks who work every day for minimum wage and little-to-no benefits in the retail, hospitality, and food service industries.
So I want to thank the folks at Ameriprise for keeping us warm and fed this winter. And I wish with all my heart that things will change for the many, many folks who find themselves in my position but who are not lucky enough to work for a company that has either the resources or the sense of responsibility to its employees that Ameriprise has. We've been lucky - but people's lives shouldn't have to depend entirely on luck. The USA should not be a place where we are so comfortable with the term - and the reality of - 'The Working Poor'. We should not allow companies to pay their CEO's millions of dollars a year while the people who clean their offices go without decent health care. We owe ourselves and our neighbors - and our employees - more.
But right now I want to acknowledge the support and kindness that I and my wonderful husband (who I cannot thank enough, or live without) have gotten from all the folks at Ameriprise Financial. From the beginning we have been surrounded by the thoughtful friendship of co-workers, the kindness and understanding of managers, and the supportive assistance of the human resources staff. It's been a tough journey, but you have made it doable.
And quite frankly, although financial resources cannot help but be strained by the unbelievable expenses of fighting a losing battle with this horrible disease, we would have found ourselves homeless and broken without the excellent benefits package that Ameriprise provides its employees.
When our son was born with serious health issues, my husband was working two backbreaking full-time jobs, and yet he had no health benefits, no paid holiday or family leave, no insurance. Than, and later when my husband was injured and unable to work for an extended period, we would have lost our home and ended up on the streets if I hadn't at the time had a retirement savings to liquidate. Even so, because of those circumstances, we found ourselves in a financial hole that we still had not entirely escaped at the time I was diagnosed. If Scott was still working in the food service industry, I would never have had access to the health care services that have been essential in the last few years. We would not still be living in our own home. Scott would not have been able to have the surgery last year that narrowly prevented a massive heart attack. I probably would not have lived long enough to hold my granddaughter in my arms.
As hard as this journey has been, it could have been so much harder. And it is so much harder, for the countless folks who work every day for minimum wage and little-to-no benefits in the retail, hospitality, and food service industries.
So I want to thank the folks at Ameriprise for keeping us warm and fed this winter. And I wish with all my heart that things will change for the many, many folks who find themselves in my position but who are not lucky enough to work for a company that has either the resources or the sense of responsibility to its employees that Ameriprise has. We've been lucky - but people's lives shouldn't have to depend entirely on luck. The USA should not be a place where we are so comfortable with the term - and the reality of - 'The Working Poor'. We should not allow companies to pay their CEO's millions of dollars a year while the people who clean their offices go without decent health care. We owe ourselves and our neighbors - and our employees - more.
2/19/12
And Now For Something Completely Different
I am now deprived of one of my biggest and most effective incentives for moving forward with these awful treatments. However, I can't regret the loss one bit.
I am no longer waiting to meet my granddaughter.
I am no longer waiting to meet my granddaughter.
Lorelei Katherine, otherwise known as 'The Most Beautiful Baby In The World'
2/14/12
Little Boxes
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.
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.
2/13/12
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.
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.
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.
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...
1/12/12
Newest Info
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...
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!!!
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