I have a friend who has pancreatic cancer. She has a loving husband and three extremely charming adolescent daughters. She is a dear, kind, generous, fierce and feisty woman. She has seen much of the world, but not nearly as much as we would like her to. The world needs her honesty and her fiery spirit and her laughter and her sweetness. Her family needs her even more.
Another young friend recently found out that her husband has metastatic renal cell carcinoma. They have a young son who has special needs. This is a man who is loved and needed. He is not a throw away, he is not superfluous, he is not unnecessary, he is not faceless and anonymous. He is not a place holder on this earth, just waiting for someone else to fill the space. He is unique, both to his family and to the world.
Another friend recently lost a treasured companion to cancer, a young man who had not even gotten to his forties yet.
My cousin was diagnosed with thyroid cancer at the same time that I was diagnosed with breast cancer. I had bladder cancer in my 20's, even though I had none of the risk factors for it. My dad and uncle have had cancer in the last decade or so. My sister-in-law's husband had throat cancer half a year before my breast cancer diagnosis, several of my friends have had cancers of various sorts before and since that time. My parents have had several friends die of cancer in the last decade, others among their friends had children who died of cancer, and at the moment a friend of my mom's has metastatic lung cancer.
One of my fellow patients during this past three weeks is a girl in pigtails who tightly clutches her stuffed giraffe to her chest as she follows the nurse. She gets a colorful sticker at the end of each radiation treatment. Children have to be bribed at that age, in order to get them to lay still for so long.
Most of these people have little or no family history of cancer, many don't have any of the 'typical' risk factors for cancer (no smoking or drugs, low-to-moderate alcohol consumption, low consumption of junk food, etc).
One keeps hearing about the war on cancer, how we are winning it... but most cancers have had little improvement in treatment outcome in the last 30 years or more, and the incidence rates for most cancers have been on a rising trend over that time*.
And new treatments are being researched, studied, and/or approved at a slower and lower rate every year, so there seems to be little likelihood of our even fighting to a stalemate in this particular war. Not while the status continues to be quo within our current health care system - and make no mistake, the recent changes in the system do absolutely nothing to change that. In fact, it strengthens the 'standards of care' stranglehold that Big Pharma (and its weak rubber-stamping agency, the FDA) and Big Insurance have on us and our (currently barbaric) treatment options. It encourages the lack of, even the repression of innovative research and development.
And that's just research on potential cures. Research into the possible causes of this plague (these plagues?) is nearly non-existent. The interests of business and the economy (as important a subject as that is) trump the interests of our children every time.
Why is this acceptable? Why aren't we questioning our health care providers? Why aren't we yelling in the streets about this? Why aren't we insisting on better for our children and our parents and ourselves?
Are the lives damaged and lost really all that insignificant and expendable?
How expendable are you?
*According to American Cancer Institute report on SEER statistics, there are a few cancers that have stayed stable or lowered somewhat, but most have been on the rise to one degree or another. I was expecting a significant lowering of such cancers as lung cancer, due to a lower number of smokers - but no, lung cancer rates have been rising pretty steadily and strongly over the last few decades. Odd, and not a little dismaying.
7/30/10
7/27/10
And I Thought My Bank Balance Was Scary...
So most of us now know that the plastic linings in the cans of food we grew up with, the plastic baby bottles many of us used, those foam containers our Big Macs used to come in, and the cling wrap we wrapped our food in before bringing it to school... they and many other everyday plastic products we used were full of BPA (Bisphenol A), a chemical that among other things produces a synthetic estrogen that leaves us at higher risk for prostate and breast cancer, etc.
Many of us got concerned about that, and some of us have been looking out for that for the last few years, making changes to our grocery habits in order to avoid feeding the awful stuff to our kids and ourselves.
Now it turns out* that those carbonless receipts we've been getting at the grocery store, the Post Office, our ATM's, etc, can contain 1,000 times or more the amount of BPA as one of those can liners. And the BPA can rub off on anything the receipts touch. So when we throw our receipt into our grocery bag - or worse, into our purse - the chemicals rub off onto everything the receipt touches. And from there it gets on our hands and on our food, where it can be ingested or absorbed through our skin.
Oh, good, another thing to worry about...
*you can find reports by Googling 'BPA, receipts', or link here to just one of the many reports out there.
Many of us got concerned about that, and some of us have been looking out for that for the last few years, making changes to our grocery habits in order to avoid feeding the awful stuff to our kids and ourselves.
Now it turns out* that those carbonless receipts we've been getting at the grocery store, the Post Office, our ATM's, etc, can contain 1,000 times or more the amount of BPA as one of those can liners. And the BPA can rub off on anything the receipts touch. So when we throw our receipt into our grocery bag - or worse, into our purse - the chemicals rub off onto everything the receipt touches. And from there it gets on our hands and on our food, where it can be ingested or absorbed through our skin.
Oh, good, another thing to worry about...
*you can find reports by Googling 'BPA, receipts', or link here to just one of the many reports out there.
7/25/10
Glowing, Day 14
This is a fairly detailed account of my experience on Week Two of high dose radiation treatment. The likelihood is that most folks will find it boring, and they can skip right down to the italics at the bottom, which is a moderately humorous rant on Not Eating.
The rest of this is for folks who are either caring for someone who might end up having radiation treatment, or for folks who are contemplating getting radiation treatment (specifically to the abdominal area). And for folks who for some reason have a desire to read about someone else's boring medical symptoms. We don't mind whining about our own symptoms, but other people's boring symptoms tend to induce the dreaded Eye Glaze Syndrome.
Having published the well intentioned warning, let us proceed.
I've decided to count the 'days off' in my accounting, because radiation keeps working for a while after you stop doing it. According to my oncology counselor, it keeps working for about twice as long as the treatment regimen - I'm taking radiation treatment for three weeks, and that means it will keep working on my tumors (if it is working at all) for six weeks altogether. I assume it will keep working on my internal organs for that long, as well, which is less pleasant, but there we are.
I know that this is true at least in part because during my friend from New York's visit, my husband went to bed before I did. This meant that he did not apply 'Special Skin Care Cream' to my hips and backside, and the burny thing has gotten worse during this period. Oops.
I will miss my friend, now that she has returned to NYC, but it may be a good thing for me that she did so relatively quickly. I'm back to the skin care routine, and I'm sure my dermis is grateful.
Other than the burn thing, and the fact that my hip pain has gotten worse rather than better over the past couple weeks - causing my blood pressure to remain elevated - the major side effects during radiation treatment seem to be related to my digestive system.
This mainly involves transient nausea (urgh), and... ummm... intestinal upset and discomfort.
Cancer treatment is not for the squeamish. A lot of the side effects of treatment involve more awareness of and dealings with various bodily fluids and semi-solids than the normal person generally cares to experience.
So far the nausea medications we've tried have either been completely ineffective, or they have actually made the nausea worse and added dizziness and headaches to the mix.
The diarrhea medications worsen the nausea and swing the problem over to the exact opposite end of spectrum, which may possibly be worse than the original situation. On one hand, it's easier on the backside and the general bathroom atmosphere; on the other hand, even very moderate straining is hard on the tumor pain issue, and I end up feeling as though I have swallowed an entire yard bag full of clay.
It turns out that I would not enjoy ingesting an entire yard bag full of clay. Who knew?
It also turns out that I've learned a lot more about what I would and would not enjoy ingesting, because the other thing you need to do when your intestines are being irradiated is eat... well, it turns out there isn't an awful lot you can eat, actually. Especially if you have other conditions that already limit your diet.
For my other issues, I had to eliminate grains (yes, all of them, including corn and corn products - try that for a while), and nightshades (potatoes, tomatoes, sweet and spicy peppers of all sorts, eggplant), and I was supposed to raise my intake of healthy fats. For me, this involved a lot of salads, mostly salads that included meat and a good amount of dressing. I happen to actually like salads, especially in the summer, so this diet isn't as difficult as one might think. Once you get used to it.
I did hit Rebellion Stage when my doctor suggested that I should cut out the dairy. It turns out that life without yogurt and cheese is not something I can face like an adult. Not with the above limitations, at least.
For this situation, I can't eat anything with fiber (including veg with skin or seeds, fresh veg or fruit, leafy veg, nuts, or seeds). And I'm supposed to avoid fats, even the healthy ones. Which also eliminates frying and sauteing and nearly all saucing.
Which pretty much leaves me with chicken broth and skinless chicken breasts (no onions, garlic and shallots probably also banned if I were to actually specifically look the information up), and baked skinless sweet potatoes with apple sauce (because butter is a no-no). And tapioca pudding, if made with sugar rather than high fructose corn syrup.
Under no circumstances should I have anything even vaguely resembling a salad.
Of course, then the skin and energy issues become a problem, because I'm not getting the fats I need to digest and function properly. And of course, the fat restriction thing also means restricting dairy.
I mentioned Rebellion Stage, didn't I?
So I am compromising. I'm eliminating (temporarily) the veg and MOST of the fruit. Watermelon is the only thing that I find helps with the nausea, so I am eating a moderate amount of that on days where the nausea is really getting to me. And I'm drinking a little cherry or lemon juice in my water when I'm just dying for a bit of bright flavor. I'm eating meat, eggs, and/or soup (no veg, unless skinless & seedless and highly pureed) for pretty much all my meals, accompanied at dinner by baked sweet potato (no skin).
That far, I am willing to go. But I'm eating whatever meat I want, and if it has fat, well that's just tough. And I'm having dairy. I am also cheating a bit and allowing myself sauces and mashed potatoes or hashed browns when we go to a restaurant with friends. Because otherwise I'm pretty much limited to meat or plain eggs without any side at all. Otherwise I know from experience that I will just chuck the whole thing and either eat whatever the heck I want, or I will pretty much refuse to eat at all**.
Even with that, things are pretty boring in the eating department, what with the limitations on the butter, olive oil, sauces, etc. I like veg, I really miss them. When your independence and mobility are limited, and your activities are largely curtailed, meals end up comprising a depressingly large section in your list of Things That Make Today Different From Yesterday.
Other than the above, things are going okay. I'm easily fatigued, but not too extremely - I attribute this to the LDN*, and I am grateful. The radiation burns aren't too bad, which is a surprise, given my thin oversensitive Irish skin. I attribute this to the skill of my radiologist and the care of my skincream-wielding husband, and again I am grateful. The medications are, as usual, not working well and causing bad side effects - not surprising, and for this I am resoundingly ungrateful, but resigned.
And that, as they say, is that. For now.
*Low Dose Naltrexone
**Looking at me, you'd think the 'eat everything' option would be my preference, but past experience is that my first reaction is to go on hunger strike. For some reason this is easier on my rather faulty Decision Making faculties, being a more passive approach. It also works well with my particular digestive system, which doesn't trip the Hunger Switch on any particular day until I've actually eaten something.
You would think this situation would lead to a tendency to lose weight, but evidently I am a walking example of the physics Law of Energy Conservation. My body is enthusiastically Green - I recycle the same single calorie hundreds, perhaps thousands of times. The government should study me in their attempts to design a system that accomplishes both ecological and fuel conservation.
Granted, you'd have to take your car and heating system to the doctor fairly frequently, and that would stress the health care system. But that's a burden that we'll just have to take on. There's no such thing as a free lunch. But since we've already established that lunches aren't absolutely necessary to this particular paradigm, we can probably get around that.
The rest of this is for folks who are either caring for someone who might end up having radiation treatment, or for folks who are contemplating getting radiation treatment (specifically to the abdominal area). And for folks who for some reason have a desire to read about someone else's boring medical symptoms. We don't mind whining about our own symptoms, but other people's boring symptoms tend to induce the dreaded Eye Glaze Syndrome.
Having published the well intentioned warning, let us proceed.
I've decided to count the 'days off' in my accounting, because radiation keeps working for a while after you stop doing it. According to my oncology counselor, it keeps working for about twice as long as the treatment regimen - I'm taking radiation treatment for three weeks, and that means it will keep working on my tumors (if it is working at all) for six weeks altogether. I assume it will keep working on my internal organs for that long, as well, which is less pleasant, but there we are.
I know that this is true at least in part because during my friend from New York's visit, my husband went to bed before I did. This meant that he did not apply 'Special Skin Care Cream' to my hips and backside, and the burny thing has gotten worse during this period. Oops.
I will miss my friend, now that she has returned to NYC, but it may be a good thing for me that she did so relatively quickly. I'm back to the skin care routine, and I'm sure my dermis is grateful.
Other than the burn thing, and the fact that my hip pain has gotten worse rather than better over the past couple weeks - causing my blood pressure to remain elevated - the major side effects during radiation treatment seem to be related to my digestive system.
This mainly involves transient nausea (urgh), and... ummm... intestinal upset and discomfort.
Cancer treatment is not for the squeamish. A lot of the side effects of treatment involve more awareness of and dealings with various bodily fluids and semi-solids than the normal person generally cares to experience.
So far the nausea medications we've tried have either been completely ineffective, or they have actually made the nausea worse and added dizziness and headaches to the mix.
The diarrhea medications worsen the nausea and swing the problem over to the exact opposite end of spectrum, which may possibly be worse than the original situation. On one hand, it's easier on the backside and the general bathroom atmosphere; on the other hand, even very moderate straining is hard on the tumor pain issue, and I end up feeling as though I have swallowed an entire yard bag full of clay.
It turns out that I would not enjoy ingesting an entire yard bag full of clay. Who knew?
It also turns out that I've learned a lot more about what I would and would not enjoy ingesting, because the other thing you need to do when your intestines are being irradiated is eat... well, it turns out there isn't an awful lot you can eat, actually. Especially if you have other conditions that already limit your diet.
For my other issues, I had to eliminate grains (yes, all of them, including corn and corn products - try that for a while), and nightshades (potatoes, tomatoes, sweet and spicy peppers of all sorts, eggplant), and I was supposed to raise my intake of healthy fats. For me, this involved a lot of salads, mostly salads that included meat and a good amount of dressing. I happen to actually like salads, especially in the summer, so this diet isn't as difficult as one might think. Once you get used to it.
I did hit Rebellion Stage when my doctor suggested that I should cut out the dairy. It turns out that life without yogurt and cheese is not something I can face like an adult. Not with the above limitations, at least.
For this situation, I can't eat anything with fiber (including veg with skin or seeds, fresh veg or fruit, leafy veg, nuts, or seeds). And I'm supposed to avoid fats, even the healthy ones. Which also eliminates frying and sauteing and nearly all saucing.
Which pretty much leaves me with chicken broth and skinless chicken breasts (no onions, garlic and shallots probably also banned if I were to actually specifically look the information up), and baked skinless sweet potatoes with apple sauce (because butter is a no-no). And tapioca pudding, if made with sugar rather than high fructose corn syrup.
Under no circumstances should I have anything even vaguely resembling a salad.
Of course, then the skin and energy issues become a problem, because I'm not getting the fats I need to digest and function properly. And of course, the fat restriction thing also means restricting dairy.
I mentioned Rebellion Stage, didn't I?
So I am compromising. I'm eliminating (temporarily) the veg and MOST of the fruit. Watermelon is the only thing that I find helps with the nausea, so I am eating a moderate amount of that on days where the nausea is really getting to me. And I'm drinking a little cherry or lemon juice in my water when I'm just dying for a bit of bright flavor. I'm eating meat, eggs, and/or soup (no veg, unless skinless & seedless and highly pureed) for pretty much all my meals, accompanied at dinner by baked sweet potato (no skin).
That far, I am willing to go. But I'm eating whatever meat I want, and if it has fat, well that's just tough. And I'm having dairy. I am also cheating a bit and allowing myself sauces and mashed potatoes or hashed browns when we go to a restaurant with friends. Because otherwise I'm pretty much limited to meat or plain eggs without any side at all. Otherwise I know from experience that I will just chuck the whole thing and either eat whatever the heck I want, or I will pretty much refuse to eat at all**.
Even with that, things are pretty boring in the eating department, what with the limitations on the butter, olive oil, sauces, etc. I like veg, I really miss them. When your independence and mobility are limited, and your activities are largely curtailed, meals end up comprising a depressingly large section in your list of Things That Make Today Different From Yesterday.
Other than the above, things are going okay. I'm easily fatigued, but not too extremely - I attribute this to the LDN*, and I am grateful. The radiation burns aren't too bad, which is a surprise, given my thin oversensitive Irish skin. I attribute this to the skill of my radiologist and the care of my skincream-wielding husband, and again I am grateful. The medications are, as usual, not working well and causing bad side effects - not surprising, and for this I am resoundingly ungrateful, but resigned.
And that, as they say, is that. For now.
*Low Dose Naltrexone
**Looking at me, you'd think the 'eat everything' option would be my preference, but past experience is that my first reaction is to go on hunger strike. For some reason this is easier on my rather faulty Decision Making faculties, being a more passive approach. It also works well with my particular digestive system, which doesn't trip the Hunger Switch on any particular day until I've actually eaten something.
You would think this situation would lead to a tendency to lose weight, but evidently I am a walking example of the physics Law of Energy Conservation. My body is enthusiastically Green - I recycle the same single calorie hundreds, perhaps thousands of times. The government should study me in their attempts to design a system that accomplishes both ecological and fuel conservation.
Granted, you'd have to take your car and heating system to the doctor fairly frequently, and that would stress the health care system. But that's a burden that we'll just have to take on. There's no such thing as a free lunch. But since we've already established that lunches aren't absolutely necessary to this particular paradigm, we can probably get around that.
7/21/10
Glowing, Day... umm, Either 7 or 9, Depending
So this was my seventh day of radiation, if you count only the treatment days, or Day 9 if you count the weekends (I don't get treatments on weekends).
My bone pain is getting worse instead of better, which they were not expecting.
I'm having nausea and intestinal problems, which they were not expecting. Theoretically the radiation is designed to be within tolerance levels for the intestines. They've never had someone with tumors in that spot have those problems before.
I'm having weird (visible) muscle tics during the actual radiation process, which is just plain bizarre, they've never even heard of that happening before. It doesn't hurt, it just is very, very strange.
I have a giant rash on my arm, which is a mystery... except that maybe I'm allergic to the Faslodex (the once-a-month injection they are giving me for the cancer, the last of the endocrine therapy options). I'm having a lot of problems from the Faslodex, actually - the rashes, the headaches, probably the nausea and possibly the intestinal problems, sore throat, cough, weakness, depression, joint pain, a worsening of allergy issues. And oh, yeah, the return of Depression, my favorite. As usual, everyone keeps telling me that they've never had a patient who has had these problems with the medication before.
Dr. Bouncy, very stern, informs me that the cancer is very aggressive (really? hadn't noticed) and he wants me to start chemo as soon as the radiation treatment is over. The Faslodex can take up to 6 months to get to therapeutic levels in the body, and without specifically saying so, the gist is that he doesn't feel that I have 6 months to Wait And See.
He uses emotional blackmail to push the chemo option, waving impending death and my son at me (gee, I hadn't thought of that...), in hopes that this will bring me to see reason.
Because, you know, the other medications** are working so much as he expected that OF COURSE I should trust that somehow the chemo will work as he wishes it would. Even though the chemo treatments generally don't work as well or extend your life as the endocrine therapies can, and have so many more potentially horrific side effects.
It's not that he doesn't care. He does, clearly. But he's a straight standards-of-care guy, so once the endocrine options are over with, chemo is all he's got left to offer. And he's an optimist by nature, so he's hoping for a miracle of sorts - not the sort of miracle where I'm cured, but the sort of miracle by which I eke out another year or two, which he'd count as a success, as it would get me to the top end of the 'average' lifespan for someone diagnosed with Stage IV BC.
He thinks in terms of the average patient, or even in terms of the average unlucky/sensitive patient, in spite of my body's baffling refusal to react like one up to this point. That's not his fault - he hasn't been living with my body for the last 50 years, like I have. I'm disappointed, I'm upset, I'm scared... but I'm not the least bit surprised. This is all pretty much par for the course.
I plan to hold out until the scan after the radiation theoretically will have pretty much done whatever it's going to do - about two weeks after the last treatment, I think. The scan and how I feel will give me a bit more information to work with, and then I'll have some very tough decisions to make. Again. I have few possible paths, and all of them lead into dark, blind alleys... no way to know how long any of them might be, or what might lurk within.
Except that somewhere in all of them, inevitably, There Be Monsters.
**Like the Aromatase Inhibitors that should have been relatively symptom-free and should have given me a couple years progression-free (instead of a couple months), and the Faslodex (which all their other patients have had no problems with)...
My bone pain is getting worse instead of better, which they were not expecting.
I'm having nausea and intestinal problems, which they were not expecting. Theoretically the radiation is designed to be within tolerance levels for the intestines. They've never had someone with tumors in that spot have those problems before.
I'm having weird (visible) muscle tics during the actual radiation process, which is just plain bizarre, they've never even heard of that happening before. It doesn't hurt, it just is very, very strange.
I have a giant rash on my arm, which is a mystery... except that maybe I'm allergic to the Faslodex (the once-a-month injection they are giving me for the cancer, the last of the endocrine therapy options). I'm having a lot of problems from the Faslodex, actually - the rashes, the headaches, probably the nausea and possibly the intestinal problems, sore throat, cough, weakness, depression, joint pain, a worsening of allergy issues. And oh, yeah, the return of Depression, my favorite. As usual, everyone keeps telling me that they've never had a patient who has had these problems with the medication before.
Dr. Bouncy, very stern, informs me that the cancer is very aggressive (really? hadn't noticed) and he wants me to start chemo as soon as the radiation treatment is over. The Faslodex can take up to 6 months to get to therapeutic levels in the body, and without specifically saying so, the gist is that he doesn't feel that I have 6 months to Wait And See.
He uses emotional blackmail to push the chemo option, waving impending death and my son at me (gee, I hadn't thought of that...), in hopes that this will bring me to see reason.
Because, you know, the other medications** are working so much as he expected that OF COURSE I should trust that somehow the chemo will work as he wishes it would. Even though the chemo treatments generally don't work as well or extend your life as the endocrine therapies can, and have so many more potentially horrific side effects.
It's not that he doesn't care. He does, clearly. But he's a straight standards-of-care guy, so once the endocrine options are over with, chemo is all he's got left to offer. And he's an optimist by nature, so he's hoping for a miracle of sorts - not the sort of miracle where I'm cured, but the sort of miracle by which I eke out another year or two, which he'd count as a success, as it would get me to the top end of the 'average' lifespan for someone diagnosed with Stage IV BC.
He thinks in terms of the average patient, or even in terms of the average unlucky/sensitive patient, in spite of my body's baffling refusal to react like one up to this point. That's not his fault - he hasn't been living with my body for the last 50 years, like I have. I'm disappointed, I'm upset, I'm scared... but I'm not the least bit surprised. This is all pretty much par for the course.
I plan to hold out until the scan after the radiation theoretically will have pretty much done whatever it's going to do - about two weeks after the last treatment, I think. The scan and how I feel will give me a bit more information to work with, and then I'll have some very tough decisions to make. Again. I have few possible paths, and all of them lead into dark, blind alleys... no way to know how long any of them might be, or what might lurk within.
Except that somewhere in all of them, inevitably, There Be Monsters.
**Like the Aromatase Inhibitors that should have been relatively symptom-free and should have given me a couple years progression-free (instead of a couple months), and the Faslodex (which all their other patients have had no problems with)...
7/13/10
Glowing, Day 2
Just a quick update:
Radiation is interesting. They do multiple x-rays every day while you lay on the hard slab (in my case, with my pants pulled down around my thighs - this is not an exercise that leaves you with your dignity intact), in order to make minute changes to your position so that they can target you as accurately as possible. Then a big disk full of various gadgets circles around you, making noises and vibrating, stopping here and there. Sometimes as one gadget or another swoops around and stops to hover above you, it sort of seems like they are peering at you quizzically - one alien being puzzling over another.
In my case, as the radiation hits me on one part or another, my muscles twitch involuntarily. It feels like someone plucking at my clothing, if there was clothing there. It doesn't hurt, it just feels very odd. The nurses say that this has never happened before, as far as they know. I'm sooooo special.
It feels a bit hot. I can tell that yes, it will feel as though I have a sunburn from the inside out. Currently it's more like that tingly heat you feel when you've been in the sun a bit too long - not pleasant, but not bad yet.
The positioning process is the long part - that takes 15 minutes or so. The treatment itself only takes 5 minutes or so, very quick.
Afterwards I feel a little wobbly, but it's not too bad. A few hours later I feel nauseous and a little muscle-fatigued, and a few hours after that I am also really tired. I suspect that this, as with the burning, will increase in intensity as I go along, a cumulative effect. For now, an hour's nap gives me enough energy to make it through dinner and watching television until bedtime. Tonight I'm more nauseous and have a moderate headache, but I don't know how much of this is due to the radiation and how much might be caused by the new medication.
I'm not really reading my email too much - I'm reading the personal emails, and trying to respond when I can, but I don't have much energy and focus for writing. I apologize to all the very kind people who have sent me posts - it may be a few weeks before I get back to you, but I really do appreciate your support and kindness. It helps so much to know that you are there in my corner.
And if you read this and your are in my fiber list, please let my Secret Sister know that I got the beautiful shawl. It's fabulous, so soft and cuddly, and the colors are incredible (my favorites)! I can't wait until it gets cool enough that I can snuggle into it, but until then I hung it over the back of my rocking chair where I can see it every day, to remind me of you and all the gals.
That's a wonderful thing to think about. Thank you so much!
Radiation is interesting. They do multiple x-rays every day while you lay on the hard slab (in my case, with my pants pulled down around my thighs - this is not an exercise that leaves you with your dignity intact), in order to make minute changes to your position so that they can target you as accurately as possible. Then a big disk full of various gadgets circles around you, making noises and vibrating, stopping here and there. Sometimes as one gadget or another swoops around and stops to hover above you, it sort of seems like they are peering at you quizzically - one alien being puzzling over another.
In my case, as the radiation hits me on one part or another, my muscles twitch involuntarily. It feels like someone plucking at my clothing, if there was clothing there. It doesn't hurt, it just feels very odd. The nurses say that this has never happened before, as far as they know. I'm sooooo special.
It feels a bit hot. I can tell that yes, it will feel as though I have a sunburn from the inside out. Currently it's more like that tingly heat you feel when you've been in the sun a bit too long - not pleasant, but not bad yet.
The positioning process is the long part - that takes 15 minutes or so. The treatment itself only takes 5 minutes or so, very quick.
Afterwards I feel a little wobbly, but it's not too bad. A few hours later I feel nauseous and a little muscle-fatigued, and a few hours after that I am also really tired. I suspect that this, as with the burning, will increase in intensity as I go along, a cumulative effect. For now, an hour's nap gives me enough energy to make it through dinner and watching television until bedtime. Tonight I'm more nauseous and have a moderate headache, but I don't know how much of this is due to the radiation and how much might be caused by the new medication.
I'm not really reading my email too much - I'm reading the personal emails, and trying to respond when I can, but I don't have much energy and focus for writing. I apologize to all the very kind people who have sent me posts - it may be a few weeks before I get back to you, but I really do appreciate your support and kindness. It helps so much to know that you are there in my corner.
And if you read this and your are in my fiber list, please let my Secret Sister know that I got the beautiful shawl. It's fabulous, so soft and cuddly, and the colors are incredible (my favorites)! I can't wait until it gets cool enough that I can snuggle into it, but until then I hung it over the back of my rocking chair where I can see it every day, to remind me of you and all the gals.
That's a wonderful thing to think about. Thank you so much!
7/9/10
What's Next
So.
I saw Dr. Bouncy. I saw the radiation oncologist. I saw the orthopedist.
Here's the upshot:
1. Against my better judgment, I am reluctantly following Dr. B's insistence that I switch to Faslodex. He wants to have another scan in two months, and if there is any progression at all, he will push hard for chemo. And let's face it, sooner or later it will come down to that fight - probably over and over again. Just thinking about it makes me tired.
2. At the meeting with Dr. B, the radiation doctor suggested two weeks of high dose radiation. When we went for the requisite scans and measurements, she changed this to three weeks. I'm hoping I won't see her again before the three weeks are over; she might raise the bid to three months.
We start treatment on Monday.
3. The orthopod wants to see me two weeks or so after the radiation treatment is done. It may be advisable to fill my the area in my left hip with bone cement, in order to try to stabilize the area. This involves punching holes through the left hip and into what is evidently two separate but adjacent tumor sites. Unfortunately, even if the tumors die off and stabilize, they do not leave nice empty spaces where they used to be - they leave soft stuff, sort of like fragile coral. The cement would have to sort of seep into whatever spaces might be available, and we don't know how stable it really would be.
We wouldn't consider this option for the tumor in the right hip - that area is not structurally unstable, so the potential benefits would not outweigh the risks. It's not a procedure that has been done a lot in the past - primarily it's been used to stabilize fracturing vertebrae, which are smaller and have less internal space to fill - so we don't know how well it would work in the long run. There's a fair risk of fracture or of problems, whether or not I decide to do the surgery. There will be more consultations between doctors before the option is even considered reasonably viable.
So that's where we are. Balancing, weighing, making decisions that will lead to other decisions. And down the road... well, we don't want to go there until we're forced to do so.
So this weekend I'll go down the road I know I want to travel. We will go down the Great River Road, stopping at our favorite berry-picking place. I will sit before a blooming garden on a high hill, picking juicy blueberries while watching the shadows of clouds scurry across the valley below and then on to the rolling hills across the way. I will feel the breeze caress my cheek, I will listen to the buzz of bees and the lowing of cows, and I will breathe in the smell of the good rich earth. For that time at least, I will savor being alive.
The rest will wait.
I saw Dr. Bouncy. I saw the radiation oncologist. I saw the orthopedist.
Here's the upshot:
1. Against my better judgment, I am reluctantly following Dr. B's insistence that I switch to Faslodex. He wants to have another scan in two months, and if there is any progression at all, he will push hard for chemo. And let's face it, sooner or later it will come down to that fight - probably over and over again. Just thinking about it makes me tired.
2. At the meeting with Dr. B, the radiation doctor suggested two weeks of high dose radiation. When we went for the requisite scans and measurements, she changed this to three weeks. I'm hoping I won't see her again before the three weeks are over; she might raise the bid to three months.
We start treatment on Monday.
3. The orthopod wants to see me two weeks or so after the radiation treatment is done. It may be advisable to fill my the area in my left hip with bone cement, in order to try to stabilize the area. This involves punching holes through the left hip and into what is evidently two separate but adjacent tumor sites. Unfortunately, even if the tumors die off and stabilize, they do not leave nice empty spaces where they used to be - they leave soft stuff, sort of like fragile coral. The cement would have to sort of seep into whatever spaces might be available, and we don't know how stable it really would be.
We wouldn't consider this option for the tumor in the right hip - that area is not structurally unstable, so the potential benefits would not outweigh the risks. It's not a procedure that has been done a lot in the past - primarily it's been used to stabilize fracturing vertebrae, which are smaller and have less internal space to fill - so we don't know how well it would work in the long run. There's a fair risk of fracture or of problems, whether or not I decide to do the surgery. There will be more consultations between doctors before the option is even considered reasonably viable.
So that's where we are. Balancing, weighing, making decisions that will lead to other decisions. And down the road... well, we don't want to go there until we're forced to do so.
So this weekend I'll go down the road I know I want to travel. We will go down the Great River Road, stopping at our favorite berry-picking place. I will sit before a blooming garden on a high hill, picking juicy blueberries while watching the shadows of clouds scurry across the valley below and then on to the rolling hills across the way. I will feel the breeze caress my cheek, I will listen to the buzz of bees and the lowing of cows, and I will breathe in the smell of the good rich earth. For that time at least, I will savor being alive.
The rest will wait.
7/2/10
Q&A: La Vida Loca?
The delightful Delighted Hands asks this question:
My family discuss this and we have very differing views; if facing a serious and probably terminal illness, what would we do-savor 'normal' life or explore a frenzy of activity before it's too late?
That is an excellent question! (And thank you very much for asking - it's hard for me to think of things to write about at the best of times, and at this frenzied moment creativity is at a low point.)
The answer is a little tricky; I can't give a definitive answer from a perfectly objective point of view, because I don't think there is a consensus among a board of experts from which to draw a conclusion. So I can only speak from my own experience and my own heart.
Let's start with a tricky aspect of the question in the first place: what I - and probably other people who have not directly cared for a loved one with terminal illness - did not know is that to a large degree, getting the diagnosis of a serious/terminal illness tends to carry with it a certain degree of lack of control over how we spend our time.
We don't get told, "You've got a year or so, go home and do what you need to do to make peace with your life."
Nope. When we are diagnosed with a serious illness, we suddenly find our calendars filled up with doctor appointments, treatment dates, medication schedules, nutrition requirements, all sorts of lifestyle changes. And if you are like me, you spend a lot of time in research. All of which take up a lot of time, energy, time, finances, time, patience, more energy... and time.
On top of this, we end up dealing with not only the energy drain and pain levels inherent in the progression of the disease itself, but we also have to deal with the energy drain and pain levels that the treatments for the various conditions cause. So we tend to move slower and sleep more (even though our sleep is rarely what you'd call refreshing), which limits our free time even more.
So not only are the number of days in which we are going to be breathing on this earth limited, but the number of hours we are able to spend as we would like are limited, as well. And our ability to do the things we'd like to do is often limited by our physical issues - sometimes severely limited.
But let's set all those considerations aside for a moment, and assume that somewhere in all those scheduling issues and treatment issues and physical limitations, you are able to make some time for yourself, to do what you want to do (within your physical limitations). How are you going to spend it?
Well, first of all, understand that for many of us, the demands of Real Life do not stop when we get sick. Just because our spouse and our kids know that we might not be there next year, they do not stop eating or working or going to school, they still have to see doctors and pay bills and do their homework, and of course the pets and the house do not suddenly start taking care of themselves.
And yes, everyone knows that eventually those things will have to be taken care of by someone else, when you are no longer there to do them. But habit is habit, and hardship is hardship, and nobody wants to start living without you before you are even gone. That eventuality is scary, and everyone wants to put it off as long as possible - so you all tend to hang on to the habits that you have developed over your lifetimes together. It's convenient, and it's comforting in the face of the dark unknown.
And really, you want to hang on to 'normal life'. Partly as a denial mechanism, partly as a way of retaining your lifestyle (and life, if you need to work in order to pay those doctor bills and do those silly eating-and-shelter things) - and partly as a way of retaining your independence and feeling of being part of the world for as long as possible. Who of us wants to be useless and a burden to our loved ones, a lump that everyone else has to step over or move around in order to get on with their own lives? Not to mention that sitting around doing nothing is incredibly boring.
Add to that the fact that sometimes the everyday stuff is pretty darned sweet, but that sweetness only happens with the everyday investments that come with it. Your kid rarely sits down with you and says, "Look, mom, we have some free Quality Time now, so let's have a heart-to-heart about what's going on in my life." Instead, she usually confides in you whilst wolfing down the eggs and toast you just made for yourself, after wheedling you into ironing her favorite awful t-shirt.
So you want to savor the everyday things. It's important, especially if you have a family.
On the other hand, many of us have put off the things we always wanted to do until we were more financially stable, or until we had more time, or until the kids were grown, or until work got less harried, or until we retired... and somehow, between all the everyday demands and the occasional crises and the economy, that Us Time never quite happened. So when our doctors suddenly inform us that it's unlikely that we're going to get to that imagined future, we realize that if we don't do it now, we are just never going to do it at all.
Do we take that little window between the time we learn of our impending doom and the time that we become bedridden to run around trying to do all the things we thought we'd get around to Some Day?
Well, it depends. Just because you are sick, you don't suddenly gain more time, fewer demands on your time and energy, or more money (see above)... so it may just not be possible to run around putting check marks on your Bucket List.
But if you can manage it, it can be very satisfying to go on that trip you always wanted to go on, to build that classic car you always wanted, to go up in an air balloon at sunrise, to see a Broadway Musical or go to Disneyland. If you can do these things in the company of someone who you love, it can be comforting - if bittersweet - to know that you are building a happy memory to sustain them when you are gone.
If you don't have kids, and if you have the resources, you can do both the everyday and the special Big Experience stuff at the same time. You can do laundry and argue with your spouse about proper handling of whites vs. colors and what constitutes a 'delicate' while traveling on exotic shores. Sounds like fun!
If you have the resources, but you are limited by the needs of kids or of an employer, then you can trade off between the comforts of 'normal life' and the satisfaction of experiencing some of those longed-for adventures and accomplishments.
I think that either would be the ideal, that combination of both the sweet mundane joys of everyday life and the ability to experience more of the outside world. I think if there is any possible way of arranging for both, it's worth the sacrifices that might be involved. I'm incredibly grateful to my mom and dad for making sacrifices in order to help me to do a bit of that while it was still possible. I suppose it would be stupid to say that I will never forget it, under the circumstances, but I do hope that they understand how much it has meant to me, and that it will bring them some comfort to be able to remember that in the future.
But if your resources are scant, as ours generally are, there is still a lot of satisfaction available in noting the beauty in a flying wedge of migrating geese, the lacy tracings of leafless branches against a steely winter sky, the sleepy twittering of finches at sunrise, the tender curve of a grandchild's cheek, the clean lines of a newly finished quilt or a nearly perfect golf shot. There is still joy to be celebrated in the graduation of a child from one stage of life to another, another family gathering peacefully managed, a career milestone accomplished, a new skill gained. There is still sweetness in the small moments with friends, family, and children that can be caught between all the everyday demands and crises of 'normal life'... and between the not-so-everyday demands and crises of a dwindling life.
So what do we do when faced with a terminal illness? We make do with what we've got. Life is rarely ideal, and certainly the end of life is even less so. Knowing at a visceral level how very limited our own time is really going to be sharpens our vision to some degree. It forces us to prioritize. It forces us to pay attention whenever we can, and to appreciate the small things as well as the grand. If we are lucky, we can experience both in our last days or years.
7/1/10
Go Ahead, Ask Me
While I'm waiting to talk to the doctors and to set up the nasty treatments ahead, let's do something different.
Ask me a question**. Anything. It can be about me, it can be about breast cancer or cancer treatments, it can be about be about just about anything at all. If I don't know the answer, I'll try to find one, and if I can't find one, I'll make one up (I promise to give you a hint when I'm totally lying my head off or deliberately wandering about in Fairyland).
I'll paraphrase your questions in a future post, and answer. Probably in greater detail than you could possibly ever want.
Go ahead. You know you want to.
**ask the question in the comments section, or email me.
Ask me a question**. Anything. It can be about me, it can be about breast cancer or cancer treatments, it can be about be about just about anything at all. If I don't know the answer, I'll try to find one, and if I can't find one, I'll make one up (I promise to give you a hint when I'm totally lying my head off or deliberately wandering about in Fairyland).
I'll paraphrase your questions in a future post, and answer. Probably in greater detail than you could possibly ever want.
Go ahead. You know you want to.
**ask the question in the comments section, or email me.
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