My friend from YSC has passed away. She leaves behind a husband, a son, and many people who loved her in "real" life. She also touched the lives of many strangers on YSC, and I am one of them.
Today I feel a small amount of relief that her suffering is over. I was halfway hoping that she was gone - released from pain, releasing her family from the constant vigil with only one possible outcome - when I checked my email.
But the relief is small compared to the other emotions.
I'd like to copy and paste the message that gave Cathy her nickname here. This was posted June 2006, when "the boards" were going through a tough time like the one that is happening right now, with mets diagnoses and deaths, before Cathy was a mets girl, before she knew she would join the ranks of those who passed before her.
Cathy, you will be missed. Deeply.
My prayers go out for Cathy's loved ones, in particular her husband and son.
-----------------
It's happening again.Every once in a while the board goes through a really tough time. Our hearts break for our sisters whose cancers are spreading at frightening rates. We see their selfless, innocent posts that detail the cancer taking over. How they feel, what they're thinking. What they need. The struggle, the powelessness, the strength and courage.I just wanted to pull all you newbies in close and let you know that we've all been there and you are probably absolutely freaking out right now. Chemo has beaten you up, you feel like a shadow of who you used to be. Tired, depressed and overwhlemed. You may even feel guilty because you are not only sad for these beautiful women, but you are sad FOR YOU. You see yourself in every one of these women that becomes so very sick and then loses the battle.It's normal to feel this way and it's OK. We understand and so do they. Your mother may not, your husband may not. your friends may not, but we do.And there's nothing wrong with feeling sad and getting angry. But please remember that the odds are that YOU are going to get better. YOU are going to get your hair back and start to feel well again. YOU are going to get back to the life that you want to lead.So if you are checking the boards incessently right now, reading the latest post, then sobbing and then going back for more.....been there too. You are grieving....this disease is not fair....it's disgusting and ugly and perverse. And it's so much more unfair to certain sisters than others. And there's nothing fair about that.So grieve for them. Grieve for you. And then remember that you will get better.Love,cathy
Saturday, March 29, 2008
A Story of Hope
I posted this on the YSC yesterday, and then thought maybe my readers here would appreciate the story.
West Seattle is a small place. If the woman in question reads this post, or if I've inadvertantly identified her in some way (I do wish to respect her privacy), please forgive me or contact me and I'll remove the post if it offends. But I want to offer thanks to that woman for her incredible gifts and wisdom. The women of YSC have all responded with love toward her, and wishes to meet her, to be like her. Lady, you are greatly admired, and you've offered a lot of girls hope. Thank you for that.
In the sea of bad news that has been hitting my cancer community, this is of great comfort to me.
Here's the post.
--------------
For once, I was at the gym today.
I was standing next to my locker, and a woman came in beside me. She had obviously had double mastectomies. Because I often speak without thinking, I said, "I'm a breast cancer survivor. Are you, too?" and she was very open to the conversation and said "Yes" and shared quite a bit of her story.
The short version? Diagnosed at age 40. She's 72 now. She's a 32 year survivor! Hurrah! Paget's disease of the nipple, and her doctors initially gave her 6 months to live. She demanded a mastectomy (which they initially didn't want to do for some reason), refused chemo and radiation, and did naturopathic treatments. (Not what I would do, but it's obviously working for her!)
She had a recurrance a few years later, and repeated treatment on the other side....another mastectomy, again refused chemo or radiation, again did naturopathic treatments.She mentioned that she'd had a hysterectomy due to an unrelated cancer, much later, as well.
She said she never considered reconstruction. She said, "My husband never touched me again after the mastectomy. He was a fool. I've had several intimate sexual relationships since then" (I loved her candor - not what I expected of a woman of her generation!) "and I tell them up front: I want a man, not a boy. If you're here for the boobs, get lost!" and that has worked quite well for her.
She said she often forgot that she had mastectomies, and sometimes forgets her prosthesis, which is only "important" to her when she's going to the office.
(It could have gone the other way. She could have been offended by my questions, and by my obvious noticing of her double mastectomies. But she was not, she was very open. And, just to be fair, I flashed her pretty well, also!)
I admired her more than I could say. I thanked her for the hope she offered me, but I wish I'd thanked her for sharing her love of her own body and her understanding of her own self worth and sexual prowess. There we were, naked in the locker-room, and this woman did not have the body of a Roman goddess, more of a Gaia-mother-goddess. But make no mistake, she was a goddess in form. It shone from her eyes.
I wanted to share with you girls, and as soon as I could post today, that's what I'm doing.
My wish for all of us - to live that long. To feel that comfortable in our bodies. To feel joy in our sexual relationships. To feel confident in our choices. To forget that we had mastectomies (or chemo or whatever). To be confident in the locker rooms, regardless of our size, shape, and breasts (or lack thereof). To share our success with strangers who have the nerve to approach us, so that they can feed from our joy.
I hope this story gives all of us hope. Those with dire predictions as to our survival, those who have recurred, and those who hope to never repeat our experiences. Those who have already found supportive partners....and those of us who WILL find supportive partners.
It gave ME hope, so I'm sharing.
West Seattle is a small place. If the woman in question reads this post, or if I've inadvertantly identified her in some way (I do wish to respect her privacy), please forgive me or contact me and I'll remove the post if it offends. But I want to offer thanks to that woman for her incredible gifts and wisdom. The women of YSC have all responded with love toward her, and wishes to meet her, to be like her. Lady, you are greatly admired, and you've offered a lot of girls hope. Thank you for that.
In the sea of bad news that has been hitting my cancer community, this is of great comfort to me.
Here's the post.
--------------
For once, I was at the gym today.
I was standing next to my locker, and a woman came in beside me. She had obviously had double mastectomies. Because I often speak without thinking, I said, "I'm a breast cancer survivor. Are you, too?" and she was very open to the conversation and said "Yes" and shared quite a bit of her story.
The short version? Diagnosed at age 40. She's 72 now. She's a 32 year survivor! Hurrah! Paget's disease of the nipple, and her doctors initially gave her 6 months to live. She demanded a mastectomy (which they initially didn't want to do for some reason), refused chemo and radiation, and did naturopathic treatments. (Not what I would do, but it's obviously working for her!)
She had a recurrance a few years later, and repeated treatment on the other side....another mastectomy, again refused chemo or radiation, again did naturopathic treatments.She mentioned that she'd had a hysterectomy due to an unrelated cancer, much later, as well.
She said she never considered reconstruction. She said, "My husband never touched me again after the mastectomy. He was a fool. I've had several intimate sexual relationships since then" (I loved her candor - not what I expected of a woman of her generation!) "and I tell them up front: I want a man, not a boy. If you're here for the boobs, get lost!" and that has worked quite well for her.
She said she often forgot that she had mastectomies, and sometimes forgets her prosthesis, which is only "important" to her when she's going to the office.
(It could have gone the other way. She could have been offended by my questions, and by my obvious noticing of her double mastectomies. But she was not, she was very open. And, just to be fair, I flashed her pretty well, also!)
I admired her more than I could say. I thanked her for the hope she offered me, but I wish I'd thanked her for sharing her love of her own body and her understanding of her own self worth and sexual prowess. There we were, naked in the locker-room, and this woman did not have the body of a Roman goddess, more of a Gaia-mother-goddess. But make no mistake, she was a goddess in form. It shone from her eyes.
I wanted to share with you girls, and as soon as I could post today, that's what I'm doing.
My wish for all of us - to live that long. To feel that comfortable in our bodies. To feel joy in our sexual relationships. To feel confident in our choices. To forget that we had mastectomies (or chemo or whatever). To be confident in the locker rooms, regardless of our size, shape, and breasts (or lack thereof). To share our success with strangers who have the nerve to approach us, so that they can feed from our joy.
I hope this story gives all of us hope. Those with dire predictions as to our survival, those who have recurred, and those who hope to never repeat our experiences. Those who have already found supportive partners....and those of us who WILL find supportive partners.
It gave ME hope, so I'm sharing.
Friday, March 28, 2008
Frugality
I haven't forgotten all the frugal stuff I'd been blogging about, I've just been distracted.
Plus, I fell off the wagon a little bit. Not a lot, but a little bit. We ordered out a couple of times. I didn't use everything in my fridge.
But I'm vowing to be on top of it again.
Right now, the French Canadian Split Pea soup is bubbling on the stove. This uses the bone (with some meat on it, but no longer the right dimensions for slicing for sandwiches, etc.) and wastes nothing, and I'm pleased with that. This is the soup my mom made when I was a kid, and I love it. I soaked the split peas overnight last night, and today the hambone/ham, split peas, onion, bay leaf, celery, and water are bubbling away on my stove, simmering for 2-3 hours before I add carrots and seasonings and serve with a side of bread.
Speaking of bread, still making my own. Mostly, it's delicious.
I shopped for the split peas. First, went to the aisle with that stuff, scoped out the prices. Then went to bulk foods, and double checked. Definitely a better deal bulk - $.89/pound instead of $1.49/pound. I don't know how a $.60 savings is going to change much, but it's something. Perhaps more important is that the meal itself is so economical and healthy. (Okay, maybe honey baked ham isn't healthy. Okay, so it's not. But with the split peas and other veggies....?)
I ditched my Swiffer mop and got a washable one. That was the last disposable product in the house, so that will save money long term and be better for the environment. (I got rid of the Swiffer one on Freecycle.)
I'm remembering to carpool more. To drink coffee at home more. To consolidate more errands. To stay out of shops (though I've been thrift shopping a bit).
I'm FAR from perfect. But I'm on a path, and trying to find comfort in that.
Plus, I fell off the wagon a little bit. Not a lot, but a little bit. We ordered out a couple of times. I didn't use everything in my fridge.
But I'm vowing to be on top of it again.
Right now, the French Canadian Split Pea soup is bubbling on the stove. This uses the bone (with some meat on it, but no longer the right dimensions for slicing for sandwiches, etc.) and wastes nothing, and I'm pleased with that. This is the soup my mom made when I was a kid, and I love it. I soaked the split peas overnight last night, and today the hambone/ham, split peas, onion, bay leaf, celery, and water are bubbling away on my stove, simmering for 2-3 hours before I add carrots and seasonings and serve with a side of bread.
Speaking of bread, still making my own. Mostly, it's delicious.
I shopped for the split peas. First, went to the aisle with that stuff, scoped out the prices. Then went to bulk foods, and double checked. Definitely a better deal bulk - $.89/pound instead of $1.49/pound. I don't know how a $.60 savings is going to change much, but it's something. Perhaps more important is that the meal itself is so economical and healthy. (Okay, maybe honey baked ham isn't healthy. Okay, so it's not. But with the split peas and other veggies....?)
I ditched my Swiffer mop and got a washable one. That was the last disposable product in the house, so that will save money long term and be better for the environment. (I got rid of the Swiffer one on Freecycle.)
I'm remembering to carpool more. To drink coffee at home more. To consolidate more errands. To stay out of shops (though I've been thrift shopping a bit).
I'm FAR from perfect. But I'm on a path, and trying to find comfort in that.
Good Mommy
Well, the days countdown until my surgery is on,and I'm determined to be a good mommy. Today Tessa went to kids' gym at the Y (which she loves....it's ME who struggles to go and work out these days) with Jessie and Zoe, and then we all loaded up in Katie's car and went to the Science Center. We just got back, tired and ready for a quiet evening at home.
I'm about to make a soup with the leftover hambone from Easter, and we'll have a simple dinner.
Tomorrow we have no scheduled activities until a hang-out and movie night (at home) with friends Michele & Dave, and it is actually nice to have such a low-key weekend in the works. We'll attend church as a family, too, but that's about it.
Big sigh of relief - we're all tired. Ryan's home safe from Austin, Tessa's struggling with fatigue from allergies, and I'm just struggling.
Still fakin' it, trying to make it. I'm doing a lot better than on some days, although I'm more tired than usual by these little efforts. While Ryan was gone I would tuck Tessa into bed at 8:15 or 8:30 and then go IMMEDIATELY to my own bed, reading (I'm on my third Jane Austin book now, having finished Sense and Sensibility, and also finishing Pride and Prejudice, I've moved on to Mansfield Park) before falling asleep well in advance of 10pm (usually before 9:30pm!) and then struggling to get up before 8am.
I'm realizing that my thyroid may be off...looking into that.
My therapist also gave me a talking to/lecture about exercise. I broke down crying, saying "I wanted to run a marathon and this stupid surgery sets me back every time and I'm just so frustrated I don't have the energy to do anything right now!" to which she (kindly) laughed and pointed out that I'd set the bar rather high for myself. She was thinking of a 20 minute walk each day, and I'm thinking of a marathon. Sigh. This is, all too often, how I judge myself.
Yesterday I took Shep for a good long walk for a couple of miles, and listened to a podcast of WSUU sermon called "Fear of Falling" from a Sunday that I'd missed. The sermon was PERFECT for me (go to iTunes and search on WSUU and you can download it for free if you're interested) and actually had me crying tears of empathy, relief, and irony because I related so well to the messages in it. (Good thing I walk a different way each time I go, that way I can convince all of West Seattle that I'm crazy, as I laugh or cry and listen to my iPod!)
And so I'm trying. I am a Good Girl and I Do What I Am Told is Good For Me. My therapist told me to work out more to raise endorphins etc. etc. and I am. I know what to do and I do as I'm told. That doesn't mean I like it, doesn't mean it's easy, doesn't mean taht I feel instant results,but it DOES mean that I'm trying. I'm trying very, very, very hard to make my life the life I'd like it to be.
I'm about to make a soup with the leftover hambone from Easter, and we'll have a simple dinner.
Tomorrow we have no scheduled activities until a hang-out and movie night (at home) with friends Michele & Dave, and it is actually nice to have such a low-key weekend in the works. We'll attend church as a family, too, but that's about it.
Big sigh of relief - we're all tired. Ryan's home safe from Austin, Tessa's struggling with fatigue from allergies, and I'm just struggling.
Still fakin' it, trying to make it. I'm doing a lot better than on some days, although I'm more tired than usual by these little efforts. While Ryan was gone I would tuck Tessa into bed at 8:15 or 8:30 and then go IMMEDIATELY to my own bed, reading (I'm on my third Jane Austin book now, having finished Sense and Sensibility, and also finishing Pride and Prejudice, I've moved on to Mansfield Park) before falling asleep well in advance of 10pm (usually before 9:30pm!) and then struggling to get up before 8am.
I'm realizing that my thyroid may be off...looking into that.
My therapist also gave me a talking to/lecture about exercise. I broke down crying, saying "I wanted to run a marathon and this stupid surgery sets me back every time and I'm just so frustrated I don't have the energy to do anything right now!" to which she (kindly) laughed and pointed out that I'd set the bar rather high for myself. She was thinking of a 20 minute walk each day, and I'm thinking of a marathon. Sigh. This is, all too often, how I judge myself.
Yesterday I took Shep for a good long walk for a couple of miles, and listened to a podcast of WSUU sermon called "Fear of Falling" from a Sunday that I'd missed. The sermon was PERFECT for me (go to iTunes and search on WSUU and you can download it for free if you're interested) and actually had me crying tears of empathy, relief, and irony because I related so well to the messages in it. (Good thing I walk a different way each time I go, that way I can convince all of West Seattle that I'm crazy, as I laugh or cry and listen to my iPod!)
And so I'm trying. I am a Good Girl and I Do What I Am Told is Good For Me. My therapist told me to work out more to raise endorphins etc. etc. and I am. I know what to do and I do as I'm told. That doesn't mean I like it, doesn't mean it's easy, doesn't mean taht I feel instant results,but it DOES mean that I'm trying. I'm trying very, very, very hard to make my life the life I'd like it to be.
Thursday, March 27, 2008
Therapy
A good therapist is worth her weight in gold. At last, I have a good one.
Today was a good session. She allows me my fears, and then helps me with them.
The fears are still there. They'll never go away. But I'm learning how to manage them.
Today was a good session. She allows me my fears, and then helps me with them.
The fears are still there. They'll never go away. But I'm learning how to manage them.
Wednesday, March 26, 2008
Fakin' it and Makin' It
This morning Tessa and I went back to Bellevue, this time to meet Caley for a coffee date. Caley and I talked and Tessa was a dream, reading her books and drawing and allowing us to catch up. Then, when Caley left for an appointment, Tessa and I lunched with Molly and caught up with her. Now we're home, and I'm cleaning - this place needs a good scrub and the laundry needs folding.
Oh - and I found a great belt to go with my black dress, for $1.50 on sale at the thrift shop.
I have not forgotten my fears. I have not forgotten about Mama Cath. But what can I do? So I hug Tessa, visit with friends, buy a belt, clean my house.
To some degree, it works. It's distracting, and that's good. It certainly doesn't make me forget, but it tempers the pain, and that is excellent.
So here I am, muddling through. Learning. Growing. Growing pains are harder than I remembered.
Oh - and I found a great belt to go with my black dress, for $1.50 on sale at the thrift shop.
I have not forgotten my fears. I have not forgotten about Mama Cath. But what can I do? So I hug Tessa, visit with friends, buy a belt, clean my house.
To some degree, it works. It's distracting, and that's good. It certainly doesn't make me forget, but it tempers the pain, and that is excellent.
So here I am, muddling through. Learning. Growing. Growing pains are harder than I remembered.
Tuesday, March 25, 2008
Stomachaches
Today Tessa is MUCH better. We went to a Dahl ladies' family lunch, then surprised Melissa and Ross with a pop-in to their office at the church just around the corner. This afternoon we took care of Kelton and Camille, and Anna is here now. These things are good.
What's not so good is that there are several girls on YSC who are crashing. Jessica was someone I didn't know well, but she was posting her treatment plans earlier this month, and today she died. She DIED! Last night she was struggling, but still cracking jokes with her husband, and now she's gone. Another girl is drugged to the state of being incoherent, something with her spinal fluid....could it be....? And Mama Cath is slipping away. She can no longer drink through a straw, and hasn't had solid food in quite some time. She only takes water through a syringe that her loving husband feeds to her. She is incoherent and sleeps most of the time. Her three year old is watching his mother slip away.
And it is NOT OKAY. It's NOT OKAY! I yell to the universe, I AM NOT OKAY WITH THIS! I DO NOT ACCEPT THIS!
So, I have a psychosomatic stomachache. I'm not sick, really. But I am deeply, truly, sick of this.
What is my fate? Will I, too, one day be laughing, and the next be dying?
Oh, such morbid questions. I'd love to reply with something like "I'm too stubborn to die right now" but it just doesn't work like that.
I hope to live to be old. But the injustices of the world sometimes make me hurt too much. It's too much.
How's that for depressing? Sorry, dear readers. Some days are like that.
Still, my friends are kind, my house is warm (hey! I adjsuted to 66 degrees!), my family large and loving. I am listening to Tessa and Anna delight in one another and their made up game of baby gymnastics daycare. The world is not ending, even when my heart is cracking open.
What's not so good is that there are several girls on YSC who are crashing. Jessica was someone I didn't know well, but she was posting her treatment plans earlier this month, and today she died. She DIED! Last night she was struggling, but still cracking jokes with her husband, and now she's gone. Another girl is drugged to the state of being incoherent, something with her spinal fluid....could it be....? And Mama Cath is slipping away. She can no longer drink through a straw, and hasn't had solid food in quite some time. She only takes water through a syringe that her loving husband feeds to her. She is incoherent and sleeps most of the time. Her three year old is watching his mother slip away.
And it is NOT OKAY. It's NOT OKAY! I yell to the universe, I AM NOT OKAY WITH THIS! I DO NOT ACCEPT THIS!
So, I have a psychosomatic stomachache. I'm not sick, really. But I am deeply, truly, sick of this.
What is my fate? Will I, too, one day be laughing, and the next be dying?
Oh, such morbid questions. I'd love to reply with something like "I'm too stubborn to die right now" but it just doesn't work like that.
I hope to live to be old. But the injustices of the world sometimes make me hurt too much. It's too much.
How's that for depressing? Sorry, dear readers. Some days are like that.
Still, my friends are kind, my house is warm (hey! I adjsuted to 66 degrees!), my family large and loving. I am listening to Tessa and Anna delight in one another and their made up game of baby gymnastics daycare. The world is not ending, even when my heart is cracking open.
Monday, March 24, 2008
Monday again
Okay, my kiddo can't seem to catch a break.
Today was Zoe's Build-a-Bear rescheduled party, and though Tessa wasn't feeling great we went together. Tessa was very, very quiet, even though she was excited to be with her friends and to get a new toy. She asked me to carry her, though Jessie and Zoe were skipping and having fun. She fell asleep....at 11:30 in the morning....in the car on the way home, even though we were with friends.
I'm so tired of this. I feel awful that she feels so crummy!
So, we've canceled going to gymnastics class. We've canceled having Anna over for a playdate (which was also going to help Beth out). Tessa and I will stay home from the engagement party for Melissa and Ross at the Surface7's tonight. Arghhhhhh!
So, Tessa's watching Clifford and I'm doing chores.
We visited the pharmacist today to talk about side effects. I'm scheduling the appointment with the allergist. We're calling back the doctor. We still think it's allergies, and so we're checking it out fully.
Yuck.
Today was Zoe's Build-a-Bear rescheduled party, and though Tessa wasn't feeling great we went together. Tessa was very, very quiet, even though she was excited to be with her friends and to get a new toy. She asked me to carry her, though Jessie and Zoe were skipping and having fun. She fell asleep....at 11:30 in the morning....in the car on the way home, even though we were with friends.
I'm so tired of this. I feel awful that she feels so crummy!
So, we've canceled going to gymnastics class. We've canceled having Anna over for a playdate (which was also going to help Beth out). Tessa and I will stay home from the engagement party for Melissa and Ross at the Surface7's tonight. Arghhhhhh!
So, Tessa's watching Clifford and I'm doing chores.
We visited the pharmacist today to talk about side effects. I'm scheduling the appointment with the allergist. We're calling back the doctor. We still think it's allergies, and so we're checking it out fully.
Yuck.
Sunday, March 23, 2008
Happy Easter
Happy Easter, everyone.
I got up early to make an Easter brunch dish - a cinnamon swirl (very much like cinnamon rolls, but in a log shape) using the bread machine to make the dough, and then had the luxury of enjoying my coffee in bed before Tessa awoke. Of course, the girl woke up with bright eyes and filled with thoughts of the Easter Bunny. Ryan and I moved our coffee to the living room, and watched Tessa hunt for eggs (and I've experimented with a small video of that subject here on the blog). You'll see from the pictures that Tessa runs hot like Daddy, and insisted on unbuttoning her PJs. Whatever. ;-)
This year, for the first time since Tessa was born, we did NOT host an Easter brunch. When I announced to PEPS that I just wasn't up for it this year, Linda graciously stepped up and handled the whole thing. Hooray for Linda! I showed up as a guest, grateful to see all the kids do the egg hunt, grateful that I wasn't hosting.
Pictures include Tessa and Anna in polka-dot dresses (no they didn't plan that but they loved the coincidence), Tessa and Ryan, a family shot, and a rare shot of myself (look at that hair growth - amazing what two years and three months of growth looks like). Tonight I'll try to get a cute Easter shot of Tessa with her hair combed, but today she put in her own ponytail and I didn't have the heart to undo her handiwork.
Now we're having down time - we're all tired, all fighting allergies or something. We forgot to give Tessa her meds before the egg hunt, and by 1pm she said, "My head hurts" and she burst into tears. Maybe it was too much sugar, but I actually really think that the Claritin (sp?) is working. We caught up her dosage, Daddy read her stories, and now she's watching a pony movie. I'm not a big fan of TV/screen time, but I think that in this case it's what we all need - a little zoning out time. Tessa feels much better now - a good reminder to keep her on the allergy meds.
I'm getting ready for my parents to come to dinner. We are having honey ham, asparagus with hollandaise sauce, potatoes au gratin, and cobbler with ice cream (my new favorite/easy dessert). Oh, and of course, deviled eggs for an appetizer. I'll have to get pictures of Tessa's dyed eggs before we crack them all open.
I'm tired. Everything takes more energy than it should. It's surgery that does it, I think. With each surgery, my lead time is longer and harder where I obsess about it and fear it and dwell on negative thoughts. Is this inevitable? Perhaps. Knowing it's not even the last surgery, and that I'll come out of this with the hated expanders, makes it just that much worse.
But it's Easter, a time for joy and celebration, and I'm trying to focus on that. The tulips are blooming in the garden, the lilac is full of buds, and these signs of hope remind me that time passes. The days are longer, and that helps, too.
I hope by April 10 I will be feeling somewhat normal. Until then, if I can just hang on by my fingernails, that's all I ask for.
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