I'm having a nice pout.
I found out on Friday that I'm allergic to just about everything, and the thing I'm MOST allergic to is the supplements I am using to augment my laughably low stomach acid. Because it turns out that Betaine HCL is made from beets, and in spite of the fact that I've probably had beets twice in my entire life, beets are the king of the food allergy castle.
So the thing that allows me to process my food is the thing I most especially can't have.
Beets are closely followed on the No No list by sesame. SESAME?? You're kidding, right? Nope.
But before I get too giddy with 'this is pretty easy to avoid', on we go to.... well, to just about everything except lettuce and nuts and meat (but no sauces or dressings allowed, kiddies, we wouldn't want to have any sort of flavor to accidentally contaminate our food).
I guess I should be grateful I can have meat and nuts (although I can't digest them), but geeeeeeeez...
10/24/09
10/20/09
Update
I went to my appointment with Dr. Bouncy yesterday with steel butterflies slicing around in my stomach.
For one thing, I dreaded telling him and his lovely nurse that I had decided to go against their advice re Tamoxifen, at least for the moment. I am such a People Pleaser by nature, although not by effect. And I really want to please Dr. Bouncy and Nurse Jamie, because they are so kind and caring and sweet. This is the only thing they have to offer me, being strictly Standard Treatment sort of folks, and I feel bad about rejecting what is obviously their best advice and hope for me.
The other thing I was anxious about was the pain that has developed in my back, right around the spot where my kidney ends and my liver begins. With BC, liver mets are always a concern, and since I'd decided against hormone therapy (at least, for now), it would be both humiliating and scary to come smack up against a big "I Told You So" coming right out of the gate.
So Dr. Bouncy (who of course was not at all phased/fazed (sp?) by my confession of stubborn resistance - you would think I was predictable, or something) poked and prodded me a bit, pronounced himself fairly happy with my condition, decided that assuming the pain doesn't get worse it is reasonable to have my next scan in January, and cheerfully waved me off for kidney and liver function tests (what's a few quarts of bodily fluid between friends?)
So there we are. Several months of fretting for nothing.
Time to go eat lunch. I have an appointment with my surgeon for my post-surgery checkup this afternoon. Now, I know that she will disapprove of my treatment decisions and be very open about her feelings on the matter... but somehow I don't feel as badly about that as I felt about Dr. Bouncy and the lovely Nurse Jamie's opinions. I suppose I shouldn't tell her that, though.
Where are those steel butterflies when you need them?
For one thing, I dreaded telling him and his lovely nurse that I had decided to go against their advice re Tamoxifen, at least for the moment. I am such a People Pleaser by nature, although not by effect. And I really want to please Dr. Bouncy and Nurse Jamie, because they are so kind and caring and sweet. This is the only thing they have to offer me, being strictly Standard Treatment sort of folks, and I feel bad about rejecting what is obviously their best advice and hope for me.
The other thing I was anxious about was the pain that has developed in my back, right around the spot where my kidney ends and my liver begins. With BC, liver mets are always a concern, and since I'd decided against hormone therapy (at least, for now), it would be both humiliating and scary to come smack up against a big "I Told You So" coming right out of the gate.
So Dr. Bouncy (who of course was not at all phased/fazed (sp?) by my confession of stubborn resistance - you would think I was predictable, or something) poked and prodded me a bit, pronounced himself fairly happy with my condition, decided that assuming the pain doesn't get worse it is reasonable to have my next scan in January, and cheerfully waved me off for kidney and liver function tests (what's a few quarts of bodily fluid between friends?)
So there we are. Several months of fretting for nothing.
Time to go eat lunch. I have an appointment with my surgeon for my post-surgery checkup this afternoon. Now, I know that she will disapprove of my treatment decisions and be very open about her feelings on the matter... but somehow I don't feel as badly about that as I felt about Dr. Bouncy and the lovely Nurse Jamie's opinions. I suppose I shouldn't tell her that, though.
Where are those steel butterflies when you need them?
10/8/09
Stairway
Today I opened my mail and found a card from one of the wonderful gals at the retreat. It enclosed three photographs, two of me painting a very cheerful painting and looking remarkably crabby (unfortunately, I think that's probably my 'neutral setting', face-wise), and one of all of us as a group.
The group photo was taken at the very end of the retreat. We had just finished the last group exercise, which was a lovely goodbye ceremony... during which many of us, and me most particularly, leaked muchly from the eyes (and in my case, less attractively, from the nose). But there we are, stacked two-by-two on the stairs, all of us glowing, and those radiant smiles are just as sincere as the tears of moments before. The sight makes me smile (hopefully un-crabbying my face, just for a moment).
It was an amazing thing, that retreat. Those were amazing women, those gals.
It seems miraculous to me that human beings are built in such a way, with such spirit that we can grow to love so many people in less than four days. Such a short time by the ticking of the clock, but a perfectly adequate time by the beating of the heart.
The group photo was taken at the very end of the retreat. We had just finished the last group exercise, which was a lovely goodbye ceremony... during which many of us, and me most particularly, leaked muchly from the eyes (and in my case, less attractively, from the nose). But there we are, stacked two-by-two on the stairs, all of us glowing, and those radiant smiles are just as sincere as the tears of moments before. The sight makes me smile (hopefully un-crabbying my face, just for a moment).
It was an amazing thing, that retreat. Those were amazing women, those gals.
It seems miraculous to me that human beings are built in such a way, with such spirit that we can grow to love so many people in less than four days. Such a short time by the ticking of the clock, but a perfectly adequate time by the beating of the heart.
10/4/09
Retreating Forward
I spent most of this week at a retreat for women with metastatic breast cancer.
We require our own retreat (and ideally should have our own support groups, IMO), because it's hard for women in the other stages of cancer to express their true feelings when we are present - after all, we are their nightmare. The concerns we have, our feelings and our symptoms and our fears, they are all the things that 'survivors' are most desperate to avoid. And of course it's hard for us to express our true feelings when they are present, because we don't want to make them fearful and depressed, and we don't want to make them feel that their concerns aren't serious enough to be deserving of sympathy and support.
So the other gals get a large-scale retreat that challenges them physically, that opens them up to hope and joy and life. We get a small-scale retreat that pampers us physically and encourages us to both take care of business and open ourselves to the moment, as the moment is all we know with certainty that we have.
There were ten of us plus four group leaders, three of whom also have metastatic cancer. Some of us were bald, some had heads that were as downy as baby chicks, some of us had abundant hair. Some of us were grandmothers, some were mothers, some were married, some were single. Few of us looked frail, even fewer looked obviously ill. Physical pain and uneven energy was a given, a matter of degree at any particular moment, not something that needed to be dwelt upon.
We had much in common, but our journeys with cancer were unique - there was very little comparing of symptoms or treatments, even though most of us were currently in treatment and all of us had undergone various treatments and surgeries and testing. At meals, when discussion was not directed, we spoke about the concerns that all women share: career, interests, friends, family.
Mostly family. When you are forced to prioritize, when you simplify things until you get to the core of what really matters, it usually comes down to family.
The retreat was a wonderful experience. We talked about our feelings and our fears, of course, but we also talked about practical matters - organization and planning, healthcare, finances, the physical issues of menopause (most women with breast cancer are either menopausal at diagnosis or thrown into sudden menopause by the cancer treatments). We did yoga, we did breathing exercises, we listened to music, we painted. We swam and showered and jacuzzi'd ourselves until we resembled very pale raisins. We ate more food in four days than most of us eat in a month, and it was all delicious.
Those four days passed very swiftly, and we began our goodbyes on the third. It was, of course, terrible and sad to know that so many of us are likely to be gone in three years. The parting hours were bittersweet, burdened as they were with that unspoken understanding. But between the beginning and the end there was a lot of eating and talking and and crying and teasing and laughter.
...Pretty much like life, really, except with featherbeds and turndown service.
We require our own retreat (and ideally should have our own support groups, IMO), because it's hard for women in the other stages of cancer to express their true feelings when we are present - after all, we are their nightmare. The concerns we have, our feelings and our symptoms and our fears, they are all the things that 'survivors' are most desperate to avoid. And of course it's hard for us to express our true feelings when they are present, because we don't want to make them fearful and depressed, and we don't want to make them feel that their concerns aren't serious enough to be deserving of sympathy and support.
So the other gals get a large-scale retreat that challenges them physically, that opens them up to hope and joy and life. We get a small-scale retreat that pampers us physically and encourages us to both take care of business and open ourselves to the moment, as the moment is all we know with certainty that we have.
There were ten of us plus four group leaders, three of whom also have metastatic cancer. Some of us were bald, some had heads that were as downy as baby chicks, some of us had abundant hair. Some of us were grandmothers, some were mothers, some were married, some were single. Few of us looked frail, even fewer looked obviously ill. Physical pain and uneven energy was a given, a matter of degree at any particular moment, not something that needed to be dwelt upon.
We had much in common, but our journeys with cancer were unique - there was very little comparing of symptoms or treatments, even though most of us were currently in treatment and all of us had undergone various treatments and surgeries and testing. At meals, when discussion was not directed, we spoke about the concerns that all women share: career, interests, friends, family.
Mostly family. When you are forced to prioritize, when you simplify things until you get to the core of what really matters, it usually comes down to family.
The retreat was a wonderful experience. We talked about our feelings and our fears, of course, but we also talked about practical matters - organization and planning, healthcare, finances, the physical issues of menopause (most women with breast cancer are either menopausal at diagnosis or thrown into sudden menopause by the cancer treatments). We did yoga, we did breathing exercises, we listened to music, we painted. We swam and showered and jacuzzi'd ourselves until we resembled very pale raisins. We ate more food in four days than most of us eat in a month, and it was all delicious.
Those four days passed very swiftly, and we began our goodbyes on the third. It was, of course, terrible and sad to know that so many of us are likely to be gone in three years. The parting hours were bittersweet, burdened as they were with that unspoken understanding. But between the beginning and the end there was a lot of eating and talking and and crying and teasing and laughter.
...Pretty much like life, really, except with featherbeds and turndown service.
10/2/09
Tra La...
Back from two weeks (or nearly that) of shameless self-indulgence. I won't go into it too much yet, as I'm still completely tuckered out and my system is going to take a while to recover from all the dietary and physical abuse, but I just have to say that I am very, very happy that September happened just the way it did.
If you want a bit of a photo-plus-commentary on the first part of my adventures, you can find it HERE.
Otherwise, I will be reporting on the second part soon. See you then!!
If you want a bit of a photo-plus-commentary on the first part of my adventures, you can find it HERE.
Otherwise, I will be reporting on the second part soon. See you then!!
9/16/09
Laughter Backwards R Us
I am SO grateful for the folks at Pathways.
Today I took a class on 'Healing Through Laughter' with several other folks, and it was really good for me in several ways. Yes, we laughed, and yes, we talked about lightening up a bit, and we played quite a bit, but I also got some tools to use that I think will be useful with my craftwork and I got a rather delightful idea of what to do with our poor useless back yard. It won't necessarily be attractive, but it would be fun, and a gift to Scott and Bren, which is even better.
My feelings have been up and down a lot lately. I'm a bit stressed about the decisions I have to make, and stressed about the changes to come, and stressed about all the things I have to do in order to prepare for both the short and the long term future. But I'm excited about the upcoming trip and retreat, and happy about all the lovely people I've been meeting along this journey, and grateful to all the people who have been supporting me on both an emotional and a practical level this year. I'm sad that I may be leaving this world sooner than I would wish, but joyful that it is so very beautiful and full of wonders.
There was a huge flock of sparrows on my lawn and steps and rooftop this morning when I came home. Such small, unremarkable little balls of fluff, but when they took flight with a drumming rustle and a flourishing swoop into the clear blue sky, my heart took wing with them, they were so joyous and free and alive.
(and hungry, too, but then... aren't we all?)
Today I took a class on 'Healing Through Laughter' with several other folks, and it was really good for me in several ways. Yes, we laughed, and yes, we talked about lightening up a bit, and we played quite a bit, but I also got some tools to use that I think will be useful with my craftwork and I got a rather delightful idea of what to do with our poor useless back yard. It won't necessarily be attractive, but it would be fun, and a gift to Scott and Bren, which is even better.
My feelings have been up and down a lot lately. I'm a bit stressed about the decisions I have to make, and stressed about the changes to come, and stressed about all the things I have to do in order to prepare for both the short and the long term future. But I'm excited about the upcoming trip and retreat, and happy about all the lovely people I've been meeting along this journey, and grateful to all the people who have been supporting me on both an emotional and a practical level this year. I'm sad that I may be leaving this world sooner than I would wish, but joyful that it is so very beautiful and full of wonders.
There was a huge flock of sparrows on my lawn and steps and rooftop this morning when I came home. Such small, unremarkable little balls of fluff, but when they took flight with a drumming rustle and a flourishing swoop into the clear blue sky, my heart took wing with them, they were so joyous and free and alive.
(and hungry, too, but then... aren't we all?)
9/8/09
Now
My dad doesn't think it can happen. The cards are already stacked, and what happens now is just noise.
He may very well be correct - it's more likely than not. But right is right, and I can't just sit back resignedly and wait for the worst to happen to my neighbors and my child, any more than I can just sit back and wait for the worst to happen to me. They may say I'm doomed, I may even think they are probably right, but I'm not going to go quietly.
So. Here's a bit of noise, and I've written to my representatives in D.C. to make sure they can hear it. They can plug their ears, but that doesn't mean we shouldn't speak the truth.
He may very well be correct - it's more likely than not. But right is right, and I can't just sit back resignedly and wait for the worst to happen to my neighbors and my child, any more than I can just sit back and wait for the worst to happen to me. They may say I'm doomed, I may even think they are probably right, but I'm not going to go quietly.
So. Here's a bit of noise, and I've written to my representatives in D.C. to make sure they can hear it. They can plug their ears, but that doesn't mean we shouldn't speak the truth.
8/24/09
Ms. Roseannadanna Was Right
It's always something.
Spontaneous bleeding was something I thought I left behind with the hysterectomy, seven months ago.
Evidently not. I tell you, it's been a great weekend. So it's back to the gynecologist. Luckily someone decided to have a baby during my scheduled 6-month checkup, so I was re-scheduled to tomorrow in any case. At least I won't have to try to wrangle something at the last minute - if you are a gal, you know how easy (*koff*) it is to get an appointment with your OB/Gyn.
Blah, blah, blah...
Spontaneous bleeding was something I thought I left behind with the hysterectomy, seven months ago.
Evidently not. I tell you, it's been a great weekend. So it's back to the gynecologist. Luckily someone decided to have a baby during my scheduled 6-month checkup, so I was re-scheduled to tomorrow in any case. At least I won't have to try to wrangle something at the last minute - if you are a gal, you know how easy (*koff*) it is to get an appointment with your OB/Gyn.
Blah, blah, blah...
8/19/09
Cuckoo
I pulled Nurse Ratched for the sleep study, which was an exercise in both futility and discomfort.
She irritably asserted that I had sleep apnea (because everyone else who comes there does, according to her).
She asserted that my stuffiness at night was not allergies but irritation from the apnea (because everyone else has that problem).
She asserted that my skin couldn't possibly be allergic to/irritated by the glue they used on my head/face or the material the mask for the c-pap is made out of (ignore those little round contact-shaped rashes on your skin in the morning, nobody else ever had those).
In the morning she did admit that I didn't seem to have apnea, but added in a complaining tone that this was probably because when I managed to doze off I slept on my side instead of 'supine'. Evidently I would have had apnea like everybody else if I had slept in the slightly different position I had reported as being my habit. Clearly I was just being difficult. (I do usually tilt a bit further forward than a completely side-laying position, but there was a bunch of wires and glued-on contacts on my head and face and a bunch of machinery stuffed up my nostrils, so I wasn't able to sleep in a way that put more pressure on them).
She then made up for this tiny admission by sarcastically noting that the wires had tipped my cup of water all over the cart - 'it's only fifteen thousand dollars worth of computer.' I refrained from pointing out that I had originally put my cup on the ledge on the other side, and that she was the one who had decided it should be moved to the cart.
She was able to reassert her position very quickly after that by directing me to the stubbornly arctic shower by which I was supposed to rid myself of the half pound of glue and interesting blue X's she'd ground into my head and face. Nobody else has ever complained about the shower being too icy. She came into my room to inform me of this, but did not put her hand into the water to check it when I ran the shower as a demonstration.
And she was right. Nobody else complained about the shower this morning. The two other people having sleep studies this morning were stoic looking older men who were very quietly sliding their way towards the elevators when I flagged them down. I asked them how they had been able to manage the cold showers.
Neither of them had used the shower.
We all washed our heads in the bathroom sinks.
She irritably asserted that I had sleep apnea (because everyone else who comes there does, according to her).
She asserted that my stuffiness at night was not allergies but irritation from the apnea (because everyone else has that problem).
She asserted that my skin couldn't possibly be allergic to/irritated by the glue they used on my head/face or the material the mask for the c-pap is made out of (ignore those little round contact-shaped rashes on your skin in the morning, nobody else ever had those).
In the morning she did admit that I didn't seem to have apnea, but added in a complaining tone that this was probably because when I managed to doze off I slept on my side instead of 'supine'. Evidently I would have had apnea like everybody else if I had slept in the slightly different position I had reported as being my habit. Clearly I was just being difficult. (I do usually tilt a bit further forward than a completely side-laying position, but there was a bunch of wires and glued-on contacts on my head and face and a bunch of machinery stuffed up my nostrils, so I wasn't able to sleep in a way that put more pressure on them).
She then made up for this tiny admission by sarcastically noting that the wires had tipped my cup of water all over the cart - 'it's only fifteen thousand dollars worth of computer.' I refrained from pointing out that I had originally put my cup on the ledge on the other side, and that she was the one who had decided it should be moved to the cart.
She was able to reassert her position very quickly after that by directing me to the stubbornly arctic shower by which I was supposed to rid myself of the half pound of glue and interesting blue X's she'd ground into my head and face. Nobody else has ever complained about the shower being too icy. She came into my room to inform me of this, but did not put her hand into the water to check it when I ran the shower as a demonstration.
And she was right. Nobody else complained about the shower this morning. The two other people having sleep studies this morning were stoic looking older men who were very quietly sliding their way towards the elevators when I flagged them down. I asked them how they had been able to manage the cold showers.
Neither of them had used the shower.
We all washed our heads in the bathroom sinks.
8/10/09
Guacamole Gazpacho
Here's the first of my health-conscious recipes. This one is also a 'raw foods' recipe, for those of you who are interested. It's a cold summer soup, and so far it's holding up well for several days in the fridge - my friend** and I actually preferred it a couple days later to the day we made it.
Roughly chop onions, peppers, cucumber, & garlic, put in blender or processor with 3 cups water, process thoroughly. Strain through fine colander, pressing well to extract all the juices. Return strained part to blender*, add avocados, lime juice, tsp. salt & cilantro (setting aside a few leafs for garnish). Puree until smooth. Add more water to desired thickness. Adjust seasoning but keep in mind the garnishes for individual preferences.
*The parts left in the colander go in the compost, of course...
**Thanks to Gretchen & Olivia for the photo - looks great!
Guacamole Gazpacho
4 large ripe avocados
1 large cucumber
1 green chili, de-seeded and de-ribbed
1 green bell pepper, de-seeded and de-ribbed
1 large sweet onion, peeled
2-3+ cloves garlic, peeled
3-4 cups cold, pure water
1-2 tsp. salt (to taste)
small bunch cilantro
2 limes, juiced
---garnish---
lime slices
sour cream/yogurt
remaining cilantro
1-2 ripe tomatoes, diced small (optional)
rough salt
4 large ripe avocados
1 large cucumber
1 green chili, de-seeded and de-ribbed
1 green bell pepper, de-seeded and de-ribbed
1 large sweet onion, peeled
2-3+ cloves garlic, peeled
3-4 cups cold, pure water
1-2 tsp. salt (to taste)
small bunch cilantro
2 limes, juiced
---garnish---
lime slices
sour cream/yogurt
remaining cilantro
1-2 ripe tomatoes, diced small (optional)
rough salt
Roughly chop onions, peppers, cucumber, & garlic, put in blender or processor with 3 cups water, process thoroughly. Strain through fine colander, pressing well to extract all the juices. Return strained part to blender*, add avocados, lime juice, tsp. salt & cilantro (setting aside a few leafs for garnish). Puree until smooth. Add more water to desired thickness. Adjust seasoning but keep in mind the garnishes for individual preferences.
*The parts left in the colander go in the compost, of course...
**Thanks to Gretchen & Olivia for the photo - looks great!
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