My mind likes to come out and play in the tender hours of the night, just as the light has gone out and Attie and Charles start snoring. My eyes close, and then like a college dormitory after lights-out, the doors of my mind all creep open and all kinds of thoughts flutter about . Some are good, some are not so good, often there are puzzles to be figured out and - my favorite - art projects come zooming into 3-D and I start designing things in my head. Love that part...
But, tonight, the door to my Repressed Issues came swinging open and out danced my chubby hips, and "fluffy" buttocks...my adipose tissues are haunting me.
There's a reason for this - this evening, I started reading "Ultrametabolism," a diet book by Dr. Mark Hyman. Those of you who know me well know I DETEST diets. I've been on a number of them, and they've done me no good. They've even added weight. I don't like to talk about them, I don't like to be in conversations about them, I don't like being around people who are obsessing about them - diets piss me off.
Get me around a bunch of women discussing their weight and I develop a need to pull the table cloth off, wrap it around myself, climb up on the table and begin lecturing all of my newly-created stunned audience that they're SO MUCH MORE THAN THEIR WEIGHT, that the size of their asses and their tummies SAY NOTHING about their worth as a human being. SO THERE.
But my dirty not-so-secret issue is - I'm overweight. And I hate it.
So, let's go back to the book. Why am I reading it? My nutritionist told me to. If Natalie the Wonder Nutritionist tells me to read something, I'll buy it and trust that she knows what she's doing.
Natalie Ledesma worked with my brother Chris, both as a peer and as his oncology nutritionist. Based at the University of California in Berkeley, Natalie works with Dr. Garret Smith, the oncologist my brother worked with as he fought his KS and as he wrote his book for trainers working with breast cancer survivors. (And for those of you who have managed to keep up with the timeline of Big Events in the Goad family, that's two years before I was diagnosed with breast cancer. I feel like my brother has been looking out for me!)
Natalie started working with me during my first diagnosis. Let's just say I'm not a model patient. I think she keeps me around because I'm "family" and we like each other a great deal. She's the stalwart type - even in the face of my too-frequent random indulgence in shrimp po'boys and philly cheese steak sandwiches, she sticks with me.
The last conversation we had came immediately after a call from my second opinion here in Houston. Dr. Naqvi let me know that she'd talked to my radiation oncologist and he insists that my cancer recurrence was within the field of the radiation treatments I received at the end of chemo last year. Theoretically, the recurrence shouldn't have existed. It should have either been killed by the chemo I received, or roasted by the radiation. Unfortunately, it was a resilient little schmutz, so the assumption is that I have a very aggressive form of breast cancer. If it is metastatic, I will know in the next year. It will show up somewhere.
Natalie called just after I got this delightful bit of news, and we had a frank discussion about how the docs are doing all they can for me - it's going to be up to me to make the lifestyle changes necessary to give me the best chance of surviving this crap.
Believe it or not - it's easier for me to get chemo then to make lifestyle changes.
That sounds awful. It's also unfortunately true.
I have never had a moment in my life where my weight was not an issue. I have memories of being a little girl, in first grade, and looking at my brownie pictures with some unremembered Important Person In My Life who made a comment about how fat I was. I was so ashamed. It only went downhill from there.
My world was the 1960s, 70s and 80s. The value of a woman was her looks. Oh - wait. Gee, what am I thinking?? That's the same thing for the 90s and into 2000. And it was true for decades before that. Wow. I guess women have been judged by the size of our keesters and our sex appeal for, like, ever....I'm a little bitter about that.
But I digress.
I have always been outsized. Taller than everyone, a little heavier, strong features. I feel like I stick out like a sore thumb. My features are combined with pretty sensitive nature and a dysfunctional family that moved a lot, which meant that I was always the "strange" kid at school, which meant that I was pretty much tortured by other children at school. As you can imagine, this led to my always wondering what was wrong with me. I never thought to ask the question of what was right with me. Too many people were ready to tell me otherwise.
Combine this with a propensity to put on weight, and a family obsession with both food and being thin and what you get is yo-yo dieting, a constant feeling of being a failure and a perception that my body is out to get me. Certain family members' obsession with my weight led to all kinds of crazy behavior, all perpetrated with the idea that, if I were pushed enough, embarrassed enough, told how socially unacceptable I was, I would finally get off my lazy butt and lose weight.
Yes. I'm bitter about this. At the time this was going on, I had become so socially reclusive that I was eating my lunch in the library of the high school, translating Robin Hood stories from the Middle English in the Oxford Book of Ballads. I wouldn't talk to anyone anymore - I trusted no one. Lunch consisted of a my bagged sandwich, apple, three cookies and a snickers bar. I walked every day, worked with horses and rode, and took long hikes into the ranch behind our house. I liked to come home after school and watch the Muppet Show or the 3:00 movie. I sometimes did my homework in the pasture with my filly, Chantilly. I was not lazy, nor did I snack all the time. But my body still put on weight.
I dieted and ate differently from my family, munching on weighed portions while they had what they wanted. I lost weight and was elated; I'd put it back on again and hate myself. I'd watch as my food was measured out while everyone else's was just put on their plates. I endured comments from older family members about my shorts looking like I was a cased sausage. Visiting relatives seemed to always comment on my weight, whether I looked like I was heavier or whether I looked "good".
Needless to say, my issues with weight and identity were a pattern that went on for a long time. I started Weight Watchers before Charles and I were married and lost 50 pounds. Every 10 pounds I would find myself standing in front of the mirror, gazing at my newly lightened figure, and wonder at what I ever thought was wrong with myself at that weight because I was beautiful. How could I ever have hated myself at that weight? And then I'd lose another 10 pounds and, again, I'd gaze at the image and couldn't imagine what my problem was at that weight! At 30 pounds I was astounded - I loved what I saw and bought myself an antique dress, celebrating the beautiful woman I saw in the mirror. And on it went.
And then I lost my gall bladder. The low fat, supposedly doctor-created diet had exacerbated a pre-existing, inherited condition and out it came. And then the weight started coming back on. I found myself unconsciously staring at my figure as each decade of weight layered itself on my hips and stomach, and I unconsciously found myself standing at the mirror telling myself how much of a pig I was.
Finally, at the same 30 pound benchmark, I realized that I was the exact same weight that I was when I was so proud of myself and bought the dress. The only thing that had changed was my perception of myself at that weight, not the real beauty that was standing, weeping, in the mirror. I decided to try to quit beating myself up.
I made it a game - I realized that I was just as harsh in my mind to the women around me as I was to myself, so I challenged myself to find something beautiful about every woman I saw, and if I could, tell them about it. The results were astounding - I felt better about myself. (And I made a lot of women around me feel better about themselves as well.) I've dieted a few more times after that, but each time I do, I care less. There's a portion of me that see's a diet and does everything it possibly can to rip it to pieces and to never to submit to that kind of humiliation again.
This didn't stop me from crying myself to sleep the night before my wedding, sure that my dress wouldn't fit and that I would look like a pig in my wedding pictures. That all Charles would see when I walked down the aisle was a fat woman he'd been chained to. I worked through that. But, thanks to a variety of issues - hypothyroidism, a sedentary career, my hysterectomy, chemo, my denial that food is not necessarily friend - I'm the heaviest I've ever been, and it's looking like that extra weight could kill me.
There are those of you out there who are reading this and maybe don't understand what I'm talking about at all. Weight is an easy, black and white thing for you. Eat less, exercise more, weigh less. What's hard about that? But the equation is not complete - it's like simple math. You might get an nice, easy answer, a whole number, but once you get deeper into reality, you realize that whole numbers are only real when you're counting out apples, not when you're really trying to describe something of incredible importance. It's also similar to saying that poor people are poor because they spend too much and don't save. Nope. There are too many variables that are not being accounted for.
Being overweight is not symptomatic of a weak will. It's not a sign of laziness or lack of character. It is not a sign that someone is a success or a failure in life. Nor is being thin an indication of intellectual brilliance or a sterling character. Being fat or being thin is often a chemical accident of our genetics, just as surely as that of our skin color being black, brown, yellow or pink.
I know some of you will want to lecture me on this subject after reading this post. Please, do not give in to that temptation. I will be rude if you do. I'm working with a very talented, well trained, well studied nutritionist and she will be my source for all nutrition-related issues in my life. Say a prayer of patience for her - she'll likely need it. But she will be my only source for this. I want to hear from you if you understand what I've said here, I want to hear from you about your own issues with this, I want to hear that you love me and want me around - but don't even begin to lecture me or say "I told you so." I won't like that a'tall.
I know this is a no-fun post, especially before the holidays, but it's where I'm at right now, at 12:16 p.m. This is my spectre tonight and now that I've exercised it (pun intended) I'm off to bed.
Good night.
Sunday, December 9, 2007
Sunday, December 2, 2007
Christmas Signs
It's December already. I can hardly believe it - life has been moving at absolutely rocket speed. I can barely remember Thanksgiving.
It's been a full month. At the end of October, I told you about two events in our family - Diane Ottenweller's death and Lisa Goad's new diagnosis of lung cancer.
Diane's family is working through their grief. There's a "Thank God" moment in it all - for many years, the family was living a bi-continent lifestyle, with Diane and Mark in Jo'burg with their daughter Leslie and her husband Tony, while the other two kids were living in the States. They were finally all living on one continent when her death occurred, allowing Mark and kids to grieve together, rather than alone, separated by literally 10,000 miles. That is absolutely a blessing.
Lisa is still in the hospital, but we have great hopes that she'll be out this week. She finally, FINALLY, got her chemo a few days ago. This isn't a failing on the part of the docs - many things had to happen before she was able to get the drugs. First, she had a gamma knife operation on the brain lesion. (Frankly, if it wasn't true that this cancer stuff is freaking scary, it is also absolutely fascinating! The Gamma Knife is truly revolutionary. Remember in Ghostbusters when it was baaaad to cross the streams?? That's what this technology does - it takes two streams of radiation, which on their own are benign, and crosses them at the lesion site. There's a milimeter of miss in the device....just a milimeter. Amazing!) They don't know if they got all of her tumor, but they gave it a good shot.
Then came the radiation to her back. It took about 2 weeks; Hermann Hospital in the Med Center, where she is, doesn't have the radiation facilities she needed. Memorial City, west of town, did. It's where my treatments were. Every day, Lisa was loaded into a private ambulance and driven about 14 miles to receive radiation. Now - hold onto your hats - get this: for the first week or so, every day, these private ambulances would get lost. Yep - that's right. Lost. They couldn't find their way to (1) the hospital (it's a big hospital, I promise you) and then, once they did, (2) the radiation facilities. Lisa's dad started riding with her to treatments and between the two of them, they helped the drivers find where they were going. I assume these folks were new to town...maybe to Texas... who knows. I was incredulous when she told me - how can an ambulance service not know where a big, prominent, as obvious as a sore thumb, hospital is?? It says a lot of Lisa that, by the time her treatments were done, she and the ambulance staff had bonded. They gave her a present and big hugs when she was finished.
But then, I'm not surprised. For those of you who've not met Lisa, she's a woman I can only describe as embodying grace. You'd be so proud of her - she's been in the hospital for 8 weeks now, being poked, prodded, in pain, away from her family and children, stuck in one bed for hours on end, and her peace remains. Serenity is hers, for the most part. Don't think for a moment that it is total - please trust me, this disease attacks serenity and faith as surely as it eats at your tissue - but her faith is doing its job and she's doing pretty well. I think she'll do even better when she makes it home.
We've had her's and John's two girls for a few weekends while Lisa's been at Hermann. I wish we could have had them more often - I know they're my family, but they really are wonderful kids. Hannah's the oldest. She's 9, and she's rolling with this situation very well. I not only love my niece, I also like and respect her. I'm very proud of the way she's been handling herself through this. I have sooooo much fun when they're here! Last weekend, we had a neighbor friend over to play, as well as my wonderful 14 year old niece Suzie, who's the daughter of Charles' sister Jean, and we moved the dining room table to in front of the fireplace, and then proceeded to sit around, enjoy a toasty warm fire, and work on Christmas stockings. I had a BLAST.
And then they go home. I think I like this aunt thing a whoooooole lot:)
So - I guess I should talk about where things are at for me. In a word - crazed. Look - I'm trying, very hard, not to put myself through the ringer and do too much, but I'm too awful at it! I don't know I've overcommitted myself until I'm standing in the middle of the room, wondering where the floor is. I'm working on my project at the Medical Museum - still loving every bit of it - but have hired a science writer to help wrap it up, just to take some of the load off while the Universe is giving me my turn at playing "Job". (No, not "Jobs"...that would be a different type of torture...:) I'm also doing some projects for HexaGroup, which include some web writing, project managment, and script writing.
Also, I did an interview with the father of one of my good friends last week, Mr. Gilbert Baker, founder of the AFP Group here in Houston. His firm is paying me to write the article for a local newspaper, in celebration of his 50 years in business. I can say, without equivocation, that this is one of the finest men I've ever had the grace to meet. The article will only be difficult in that I won't be able to unrestrainedly gush about the guy - I mean, I am being paid and it would sound like just so much tookus-smooching, but honest to God.... He's a man who totally lives by his ethics and creed to better his community. His company provides financial planning services for people - that's how we know them. His daughter Ann is not only one of my favorite people, she's also been our planner for the past 5 years. (She jokes that she's the 3rd person in our relationship, since Charles and I can't make a financial decision to save our lives!)
Gil loves helping people plan their futures, because he's seen first hand how his work saves lives. Yeah - saves lives. Never knew a 401k had that kind of power, huh? But he's helped 3 generations of clients save for retirement and planned for those unplanned eventualities - like what Lisa, Mark and I are going through - and knows that what he's doing allows families to continue on in dignity, with room to do what they need to for their loved ones and grieve, without relying on someone else's charity. That's very powerful. So, I'm enjoying the project.
My cancer treatments continue... we'll have to see about tomorrow's abraxane dose, tho. I've had a WHOPPER of a cold, an absolute head stuffer - bad enough that the doc office put me on cipro because I'd developed a sinus infection as well. Bleh. That's the stuff that kills absolutely everything - it's what they give folks exposed to anthrax. I spent the day in my pjs, kinda just mooching around the house... until, at 4:30, when we HAD to go get dog food (he was totally out) which woke me up, which meant we ran a few more errands, which meant I found a christmas tree, which meant we had to take care of it when we got it home...and I ended up pretty wound up....and now blogging at 11:3o at night.
We were coming home from a christmas party last night, listening to an irish music program as we cruised down the highways towards the house. We were on the North Side, coming through barrio areas. The elevated highway gave me a bird's eye glimpse into the neighborhoods as we zoomed past.
Beneath me, the humble dwellings were merrily festooned with christmas lights. I could see distinct yards as we passed, draped with zillions of little lights. The Irish music tilted along in the background - an earthy, centered music, that matched the humble state of the those homes I watched. It seemed to me so incredibly beautiful that these people, who have much less than we do, spend their time and emotional energy so lovingly on hanging those lights. They took such joy in the effort... these are people who's son and daughters are in Iraq. They joined the armed services for a way to pay for a new life, go to school, provide for their family. And their families back home were putting out christmas lights - not just as a cumpulsory activity for the season, but as a sign of Hope. The coming of the new year, new times, new decisions, new family moments. Hope of good family times to come. Hope in their God for protection for those they love.
That essence of hope came home with me last night, and amazed me with it's power. It's so easy to forget Hope, to instead become mired in the everyday dirge that has to be done and cleaned up, without realizing that Hope is waiting outside the door, ready for us to break free of our trying times and discover new life.
......wowoo...look at all the pretty swirly colors... I take it my Ambien has kicked in:) nighty-night.
It's been a full month. At the end of October, I told you about two events in our family - Diane Ottenweller's death and Lisa Goad's new diagnosis of lung cancer.
Diane's family is working through their grief. There's a "Thank God" moment in it all - for many years, the family was living a bi-continent lifestyle, with Diane and Mark in Jo'burg with their daughter Leslie and her husband Tony, while the other two kids were living in the States. They were finally all living on one continent when her death occurred, allowing Mark and kids to grieve together, rather than alone, separated by literally 10,000 miles. That is absolutely a blessing.
Lisa is still in the hospital, but we have great hopes that she'll be out this week. She finally, FINALLY, got her chemo a few days ago. This isn't a failing on the part of the docs - many things had to happen before she was able to get the drugs. First, she had a gamma knife operation on the brain lesion. (Frankly, if it wasn't true that this cancer stuff is freaking scary, it is also absolutely fascinating! The Gamma Knife is truly revolutionary. Remember in Ghostbusters when it was baaaad to cross the streams?? That's what this technology does - it takes two streams of radiation, which on their own are benign, and crosses them at the lesion site. There's a milimeter of miss in the device....just a milimeter. Amazing!) They don't know if they got all of her tumor, but they gave it a good shot.
Then came the radiation to her back. It took about 2 weeks; Hermann Hospital in the Med Center, where she is, doesn't have the radiation facilities she needed. Memorial City, west of town, did. It's where my treatments were. Every day, Lisa was loaded into a private ambulance and driven about 14 miles to receive radiation. Now - hold onto your hats - get this: for the first week or so, every day, these private ambulances would get lost. Yep - that's right. Lost. They couldn't find their way to (1) the hospital (it's a big hospital, I promise you) and then, once they did, (2) the radiation facilities. Lisa's dad started riding with her to treatments and between the two of them, they helped the drivers find where they were going. I assume these folks were new to town...maybe to Texas... who knows. I was incredulous when she told me - how can an ambulance service not know where a big, prominent, as obvious as a sore thumb, hospital is?? It says a lot of Lisa that, by the time her treatments were done, she and the ambulance staff had bonded. They gave her a present and big hugs when she was finished.
But then, I'm not surprised. For those of you who've not met Lisa, she's a woman I can only describe as embodying grace. You'd be so proud of her - she's been in the hospital for 8 weeks now, being poked, prodded, in pain, away from her family and children, stuck in one bed for hours on end, and her peace remains. Serenity is hers, for the most part. Don't think for a moment that it is total - please trust me, this disease attacks serenity and faith as surely as it eats at your tissue - but her faith is doing its job and she's doing pretty well. I think she'll do even better when she makes it home.
We've had her's and John's two girls for a few weekends while Lisa's been at Hermann. I wish we could have had them more often - I know they're my family, but they really are wonderful kids. Hannah's the oldest. She's 9, and she's rolling with this situation very well. I not only love my niece, I also like and respect her. I'm very proud of the way she's been handling herself through this. I have sooooo much fun when they're here! Last weekend, we had a neighbor friend over to play, as well as my wonderful 14 year old niece Suzie, who's the daughter of Charles' sister Jean, and we moved the dining room table to in front of the fireplace, and then proceeded to sit around, enjoy a toasty warm fire, and work on Christmas stockings. I had a BLAST.
And then they go home. I think I like this aunt thing a whoooooole lot:)
So - I guess I should talk about where things are at for me. In a word - crazed. Look - I'm trying, very hard, not to put myself through the ringer and do too much, but I'm too awful at it! I don't know I've overcommitted myself until I'm standing in the middle of the room, wondering where the floor is. I'm working on my project at the Medical Museum - still loving every bit of it - but have hired a science writer to help wrap it up, just to take some of the load off while the Universe is giving me my turn at playing "Job". (No, not "Jobs"...that would be a different type of torture...:) I'm also doing some projects for HexaGroup, which include some web writing, project managment, and script writing.
Also, I did an interview with the father of one of my good friends last week, Mr. Gilbert Baker, founder of the AFP Group here in Houston. His firm is paying me to write the article for a local newspaper, in celebration of his 50 years in business. I can say, without equivocation, that this is one of the finest men I've ever had the grace to meet. The article will only be difficult in that I won't be able to unrestrainedly gush about the guy - I mean, I am being paid and it would sound like just so much tookus-smooching, but honest to God.... He's a man who totally lives by his ethics and creed to better his community. His company provides financial planning services for people - that's how we know them. His daughter Ann is not only one of my favorite people, she's also been our planner for the past 5 years. (She jokes that she's the 3rd person in our relationship, since Charles and I can't make a financial decision to save our lives!)
Gil loves helping people plan their futures, because he's seen first hand how his work saves lives. Yeah - saves lives. Never knew a 401k had that kind of power, huh? But he's helped 3 generations of clients save for retirement and planned for those unplanned eventualities - like what Lisa, Mark and I are going through - and knows that what he's doing allows families to continue on in dignity, with room to do what they need to for their loved ones and grieve, without relying on someone else's charity. That's very powerful. So, I'm enjoying the project.
My cancer treatments continue... we'll have to see about tomorrow's abraxane dose, tho. I've had a WHOPPER of a cold, an absolute head stuffer - bad enough that the doc office put me on cipro because I'd developed a sinus infection as well. Bleh. That's the stuff that kills absolutely everything - it's what they give folks exposed to anthrax. I spent the day in my pjs, kinda just mooching around the house... until, at 4:30, when we HAD to go get dog food (he was totally out) which woke me up, which meant we ran a few more errands, which meant I found a christmas tree, which meant we had to take care of it when we got it home...and I ended up pretty wound up....and now blogging at 11:3o at night.
We were coming home from a christmas party last night, listening to an irish music program as we cruised down the highways towards the house. We were on the North Side, coming through barrio areas. The elevated highway gave me a bird's eye glimpse into the neighborhoods as we zoomed past.
Beneath me, the humble dwellings were merrily festooned with christmas lights. I could see distinct yards as we passed, draped with zillions of little lights. The Irish music tilted along in the background - an earthy, centered music, that matched the humble state of the those homes I watched. It seemed to me so incredibly beautiful that these people, who have much less than we do, spend their time and emotional energy so lovingly on hanging those lights. They took such joy in the effort... these are people who's son and daughters are in Iraq. They joined the armed services for a way to pay for a new life, go to school, provide for their family. And their families back home were putting out christmas lights - not just as a cumpulsory activity for the season, but as a sign of Hope. The coming of the new year, new times, new decisions, new family moments. Hope of good family times to come. Hope in their God for protection for those they love.
That essence of hope came home with me last night, and amazed me with it's power. It's so easy to forget Hope, to instead become mired in the everyday dirge that has to be done and cleaned up, without realizing that Hope is waiting outside the door, ready for us to break free of our trying times and discover new life.
......wowoo...look at all the pretty swirly colors... I take it my Ambien has kicked in:) nighty-night.
Monday, October 29, 2007
October Wane
It's 10:17 pm. Charles is curled up next to me, waiting for me to put the computer to bed, and then myself. He's getting up at 6:00 tomorrow morning, to get things done so we can leave for Lake Charles tomorrow night.
We have to go to a funeral. Diane, Charles' brother Mark's wife, died suddenly Friday night of a stroke or heart attack. I don't know yet which. She and Mark had just - and I mean, like a week - moved to Philadelphia from Johannesburg, South Africa. She was about 57 years old.
Diane was a beautiful, graceful, grace-filled woman. She always had a warm and inviting smile, was an incredibly lovely woman with a true and abiding faith that I was frankly in awe of. This is the first death for Charles' immediate family, and it's not been easy.
This comes on the heels of our finding out that my sister in law Lisa, my brother John's wife, has stage 4 lung cancer. Lisa is 38, the mother of four, the youngest of which is 6 months. Yes, she smoked, but that was about 13 years ago. Since that point, she's lived an enviably clean life, very healthy, very much an advocate for taking one's health both personally and seriously. She also has a very deep and abiding faith. It's doing its job now - this is what faith is there for, to carry us through the darkest moments of our lives. Hers and John's is carrying them through this.
There's a train in the distance while I'm writing this. Trains have been a soundtrack through Charles' and my life together. Charles' first apartment had a train track nearby, and at night we would lie awake together and listen to it go by - it's such a wonderful sound. It's had a haunting presence for us - our lives are moving by us with the train, moment by moment, the wheels chugging as the days go by, carrying us to the next stop.
There are many of you I've not had a chance to talk to lately, but my heart aches for you, wants you to know how very very precious you are to me and to Charles. I had a chance to talk to my dear friend Theresa, and just the sound of her sweet voice in my ear was a balm to the soul and I'm so grateful.
It's time to let Charles go to sleep.
Loveyou.
Ce
We have to go to a funeral. Diane, Charles' brother Mark's wife, died suddenly Friday night of a stroke or heart attack. I don't know yet which. She and Mark had just - and I mean, like a week - moved to Philadelphia from Johannesburg, South Africa. She was about 57 years old.
Diane was a beautiful, graceful, grace-filled woman. She always had a warm and inviting smile, was an incredibly lovely woman with a true and abiding faith that I was frankly in awe of. This is the first death for Charles' immediate family, and it's not been easy.
This comes on the heels of our finding out that my sister in law Lisa, my brother John's wife, has stage 4 lung cancer. Lisa is 38, the mother of four, the youngest of which is 6 months. Yes, she smoked, but that was about 13 years ago. Since that point, she's lived an enviably clean life, very healthy, very much an advocate for taking one's health both personally and seriously. She also has a very deep and abiding faith. It's doing its job now - this is what faith is there for, to carry us through the darkest moments of our lives. Hers and John's is carrying them through this.
There's a train in the distance while I'm writing this. Trains have been a soundtrack through Charles' and my life together. Charles' first apartment had a train track nearby, and at night we would lie awake together and listen to it go by - it's such a wonderful sound. It's had a haunting presence for us - our lives are moving by us with the train, moment by moment, the wheels chugging as the days go by, carrying us to the next stop.
There are many of you I've not had a chance to talk to lately, but my heart aches for you, wants you to know how very very precious you are to me and to Charles. I had a chance to talk to my dear friend Theresa, and just the sound of her sweet voice in my ear was a balm to the soul and I'm so grateful.
It's time to let Charles go to sleep.
Loveyou.
Ce
Friday, October 5, 2007
Scenes from a Chemo Room
Hello All!
This was composed while I was in the chemo room on Friday, October 5th, receiving my dose of Abraxane. I thought you might like to see and read about what the chemo experience is like. I wrote it on my new i-phone (the super magic phone referenced in the bottom of the post) while sitting in the chemo chair.
A lot has happened since that day. We were robbed Friday night while we were in the house, in bed. Yes. It was scary. We're both fine - please don't worry - but it was traumatic on us. Charles was my hero in the situation - I'd taken a sleeping pill so was totally zonked. Charles heard the guy in our living room, thought it was the cat at first and stuck his head out of our door and saw him standing on our futon, pulling on something. Charles yelled at him and then slammed our bedroom door while I called 911. (and where was Atticus, the formerly referred to "Pit Bull"??? Sitting on my foot, behind the bed, shivering like a leaf. He didn't hear a thing when the guy came in - and no, we don't give him sleeping pills! He's been demoted and is now The Cowardly Lion.) The police came and we discovered that the thief had stolen Charle's work computer and gone through some of the cars in the driveway.
The next morning was the Komen walk, which was a much happier affair. We put the burglarly behind us and continued on with our plans, which was the C-Team doing the walk while our wonderful husbands made us a five-star breakfast. Events like that make it easy to forget the stressful moments, and as ever, our wonderful family and friends were our solice, buffering us from the nutsiness of the previous night with their humor and love.
This is a picture of sweet Janelle, from my surgeon's office (Dr. Jo Pollack), wearing my Komen walk hat and the T-shirt my fan's at Jo's office had bought me for the walk. I was a hit out on the streets - several fellow "bosom sisters" cheered when I walked into a group, just loving the sentiment. Cindy Clayton, the captain of my team, bought a gargantuan number of pink mardi-gras beads which we gave out to as many people as we could on the walk. I could only do a mile; Barb and my sister-in-law Ann made sure I made it to the finish line after taking a short cut. We had a chance to go by the Komen Education tent and see my dear friend Betty Bezemer, who chairs the Education Committee, all decked out as a pink breast cancer angel! I wish I had a picture to put here - she was ADORABLE! Melanie and Cindy did the entire three miles and made sure they "decorated" ever police officer they saw with pink beads!
It's now Monday, and a new week has begun. I've started my Xeloda again and I'm doing fine on the slightly reduced dose. My mental acuity is taking a bit of a nosedive. I'm now writing notes to myself...and then forgetting where I put the notes!! Aww well - it's temporary. I've been joking that I need to put a "Hello My Name Is" sticker on the mirror so I can remember who the heck I'm looking at in the morning.
Charles is dealing with all of this in his own, inimical way... but I'm sure he could do with a good kidnapping and a beer or two:)
And now on to, "Scenes from a Chemo Room":
I'm writing today from the chemo room in my oncologist's office. The other Cecelia is here as well. That's her in the picture, praying with her sisters. She's also a breast cancer patient, but her's was found much later than mine. Her cancer was found at stage four. She was holding over thirty pounds of water and her tumor swelled her affected breast. I don't know what kind of cancer she had...there are many kinds.
Rose is hooking up my "breast milk" as we jokingly refer to my Abraxane dose. That's the Abraxane bag hanging on the right side of the IV pole. It only takes about 30 minutes to drip through into my veins. It takes longer to prepare - I've been in the office for about an hour and a half for the medication. That's not bad - they have to first draw my blood and make sure all of my organs are working and that my white blood cells aren't too elevated. Once they get the results, then the Abraxane is mixed by Jessica, the tech. I told her and Rose that I wanted cinnamon in today's dose - last week I requested a chocolate malt...somehow it still "tastes" the same:)
The port is in the upper left corner of my chest. Here's a picture of it with the IV in. (see, I'm smiling! Not so bad, huh??) It was installed during the mastectomy surgery. The physical port is pretty strange - it looks like a giant plastic sperm! Truly!! I was astounded when Jo (my surgeon) removed the first one. It consists of a ball with a small spot on one side made of rubber. That's where the needle goes in for the chemo. The ball has a tube that the surgeon sews into a vein that the chemo flows into my system through.
This was composed while I was in the chemo room on Friday, October 5th, receiving my dose of Abraxane. I thought you might like to see and read about what the chemo experience is like. I wrote it on my new i-phone (the super magic phone referenced in the bottom of the post) while sitting in the chemo chair.
A lot has happened since that day. We were robbed Friday night while we were in the house, in bed. Yes. It was scary. We're both fine - please don't worry - but it was traumatic on us. Charles was my hero in the situation - I'd taken a sleeping pill so was totally zonked. Charles heard the guy in our living room, thought it was the cat at first and stuck his head out of our door and saw him standing on our futon, pulling on something. Charles yelled at him and then slammed our bedroom door while I called 911. (and where was Atticus, the formerly referred to "Pit Bull"??? Sitting on my foot, behind the bed, shivering like a leaf. He didn't hear a thing when the guy came in - and no, we don't give him sleeping pills! He's been demoted and is now The Cowardly Lion.) The police came and we discovered that the thief had stolen Charle's work computer and gone through some of the cars in the driveway.
The next morning was the Komen walk, which was a much happier affair. We put the burglarly behind us and continued on with our plans, which was the C-Team doing the walk while our wonderful husbands made us a five-star breakfast. Events like that make it easy to forget the stressful moments, and as ever, our wonderful family and friends were our solice, buffering us from the nutsiness of the previous night with their humor and love.
This is a picture of sweet Janelle, from my surgeon's office (Dr. Jo Pollack), wearing my Komen walk hat and the T-shirt my fan's at Jo's office had bought me for the walk. I was a hit out on the streets - several fellow "bosom sisters" cheered when I walked into a group, just loving the sentiment. Cindy Clayton, the captain of my team, bought a gargantuan number of pink mardi-gras beads which we gave out to as many people as we could on the walk. I could only do a mile; Barb and my sister-in-law Ann made sure I made it to the finish line after taking a short cut. We had a chance to go by the Komen Education tent and see my dear friend Betty Bezemer, who chairs the Education Committee, all decked out as a pink breast cancer angel! I wish I had a picture to put here - she was ADORABLE! Melanie and Cindy did the entire three miles and made sure they "decorated" ever police officer they saw with pink beads!It's now Monday, and a new week has begun. I've started my Xeloda again and I'm doing fine on the slightly reduced dose. My mental acuity is taking a bit of a nosedive. I'm now writing notes to myself...and then forgetting where I put the notes!! Aww well - it's temporary. I've been joking that I need to put a "Hello My Name Is" sticker on the mirror so I can remember who the heck I'm looking at in the morning.
Charles is dealing with all of this in his own, inimical way... but I'm sure he could do with a good kidnapping and a beer or two:)
And now on to, "Scenes from a Chemo Room":
I'm writing today from the chemo room in my oncologist's office. The other Cecelia is here as well. That's her in the picture, praying with her sisters. She's also a breast cancer patient, but her's was found much later than mine. Her cancer was found at stage four. She was holding over thirty pounds of water and her tumor swelled her affected breast. I don't know what kind of cancer she had...there are many kinds.She has a five year-old boy who is afraid of her walking around without a hat. Apparently, some of the other little boys at school tease him about his bald mother, so he won't let her be seen with him without her scarf at least.
Rose is hooking up my "breast milk" as we jokingly refer to my Abraxane dose. That's the Abraxane bag hanging on the right side of the IV pole. It only takes about 30 minutes to drip through into my veins. It takes longer to prepare - I've been in the office for about an hour and a half for the medication. That's not bad - they have to first draw my blood and make sure all of my organs are working and that my white blood cells aren't too elevated. Once they get the results, then the Abraxane is mixed by Jessica, the tech. I told her and Rose that I wanted cinnamon in today's dose - last week I requested a chocolate malt...somehow it still "tastes" the same:)Seriously, though, I can taste some of this experience. Gratefully, it's much better than the other chemo! I'm sure you will be surprised by this, but I'm pretty sensitive! I am hyper aware of tastes and smells... I can taste the saline when they flush my port.
The port is in the upper left corner of my chest. Here's a picture of it with the IV in. (see, I'm smiling! Not so bad, huh??) It was installed during the mastectomy surgery. The physical port is pretty strange - it looks like a giant plastic sperm! Truly!! I was astounded when Jo (my surgeon) removed the first one. It consists of a ball with a small spot on one side made of rubber. That's where the needle goes in for the chemo. The ball has a tube that the surgeon sews into a vein that the chemo flows into my system through.Cecelia is telling me about how her older children are behaving through her treatments...and the answer is "badly". They're trashing her house and not helping at all.
I hope you now understand why your support and love for me, all the wonderful things all of you have been doing for me, mean so very much. Those of you who have pledged my team, who are walking with our team, who are cheering us on from afar, who pray for me.. Thank you so much.
So, Rose will be coming in a minute to un-hook me. From here, Charles and I will go get some lunch (I'M STARVING!!!) and then home to make an apple pie for after the play at UH tonight and maybe a batch of chocolate chip cookies for Julien in Paris...maybe. I may be sleeping instead:)
Love you all,
Ce
Sent from my Super-Magic iPhone;)
Friday, September 21, 2007
Cecelia and the C-Team is going the extra mile to fight breast cancer!
A message from Cecelia Ottenweller wonder_cat@yahoo.com.
Hello all!
The C-Team is walking for the Komen Walk for the Cure event this year in downtown Houston on Saturday, October 6. That's just a few weeks away!
As most of you know, I'm doing my "second tour of duty" with breast cancer. I was rediagnosed with a small local metastasis (the nasty "M" word) in June during my six month follow-up after last year's battle. So, I'm bald and beautiful again. Yay. The good news is that my lymphnodes were clean when they did the mastectomy, so my prognosis is very, very good.
But, I'm only one of millions struck by this disease, frankly. One in every eight women are struck by breast cancer... And me and my "bosom sisters" are being diagnosed younger and younger every year. This isn't solely a women's disease either - I actually know 3 male survivors!
Having cancer is a powerless feeling. You're overwhelmed by something you honestly don't have any control over - but the truth is that, collectively, we DO have some control and donating to organizations such as Komen is one way of gaining that control. Komen donates oodles of money to research every year and is responsible for the development of the drug Herceptin, a true miracle drug that has helped women who previously had limited tools to fight their particular cancers. So, if you don't donate to Komen, please donate to one of the other fine organizations that support breast cancer research!
We'd love to have you join us on the walk. We have a grand time, throwing pink beads to other participants, dressing funny, making and meeting friends along the walk - and it's all for a good cause. Make a pledge, grab your walking shoes and come do an easy 3 mile walk with us...but keep your hair. I get jealous if anyone else is bald:)
All love,
Cecelia
Click here to visit my personal page.
If the text above does not appear as a clickable link, you can visit the web address:
http://www.komen-houston.org/site/TR/Race/General?px=1164342&pg=personal&fr_id=1020&et=d-cXpp2-rcvVaE_4sPcYgg..&s_tafId=15601
Click here to view the team page for CTM- The "C" Team
If the text above does not appear as a clickable link, you can visit the web address:
http://www.komen-houston.org/site/TR/Race/General?team_id=18190&pg=team&fr_id=1020&et=YzMpL-LTYmE1wI9mDEOo4w..&s_tafId=15601
Sunday, September 16, 2007
Free Associating Ketch-up
First, an apology. It's been three weeks since my last post and any of you who were hoping to keep up with how I'm doing via the blog must have decided that the first dose of chemo killed me and someone buried me already.
Thank God, that's not the case.
The chemo has been fine, believe it or not. I'm simply amazed. Quite frankly, I was prepared to be feeling like hell for the next few months and it's rather a pleasant shock that I'm doing so well. I'm almost not sure what to do with myself... My friend Ingeborg has been chastising me to take a break, to use the time to take a breather, but I like what I do, so I'm doing it. Arnaud is keeping me pretty busy - or as busy as I'll let him keep me. I had to turn away work for the first time last week and it really wrenched me. Hated it. But it was the right thing to do for both of us - I do go down at times and when that happens, nothing gets done, which is a bad place for both him and me to find ourselves in if we've got a deadline. So, shocking as it might be, I'm trying to make some pretty adult choices, but overall, life is fine.
I'm also the content specialist for a local museum's new set of permanent exhibits. That's been GREAT. I can't give the details, but I'm working for two people I have a huge amount of respect for and to be on their team is a pretty heady thing!
The third leg of my busy-ness these months is Olivewood Cemetery. It's the first incorporated African American Cemetery in Houston, dating from 1875. I'm on the board of directors and we're busy working on building a plan for the cemetery's future. It's an absolutely FASCINATING place. Anyone who's not heard me cluck about this might be forwarned not to get me started during pleasant conversation. It's highly addictive! We've evidence of west African burial practices and other neat things that I can't go into now. Our group, The Descendants of Olivewood, are battling with another group for stewardship of the cemetery and it's been a very interesting process. We got to court on November 1 and then mediation on November 7th - I'll be better able to describe what we're up to after that point. Let's just say it's been quite the growth process.
And, oh yeah, there's the cancer. Or, rather, there's not the cancer. But there is the chemo, as well as the associated side effects of everything else I've been through.
First, the chemo: Neither the intravenous chemo or the pills have caused any of the extreme side effects yet. I am loosing my lovely hair, however, and am leaving a light trail of curly hairs wherever I go. I never thought I'd be so upset to see the wacky curls go, but you know, I've finally decided that they suit me!! So, I'm hoping they come back and stay that way. I was in the oncologist's office two weeks ago and happened to bump into my doc while I was on my way to the chemo room; her eyes got wide and, astonished, she said, "you look good!" Uh... what, was she expecting?? Is she going to try harder next time to bring me closer to death's door?? I sat and thought about that response the whole time I was getting my IV...
Secondly, the hysterectomy: It's playing havoc with me. I was so dreadfully afraid of having my ovary and uterus out, but told the docs to do the surgery anyway. I knew it would ultimately save my life. The ovary was determined to go wacky - when they yanked it, it was the size of a large orange and the uterus had a fibroid that was going "bad". Three years ago, I had to have the right one pulled and when it was finally cut out, it weighed a pound and was the size of a large grapefruit. (Yes, I'm aware of the citrus theme...)
We're all adults here, so I can be frank; my biggest fear has been the of loss of my sex drive, that happy alive feeling when all of the hormones are flowing in the right direction... I was afraid I'd become something like our cat Cricket, kinda fat, kinda lazy, really kinda nuts... a dull creature with her essential creative force lost forever.
Charles and I went to the city-wide Janmashtami celebration at the George R. Brown convention center last weekend. (I'm still on topic here... small diversion...) Janmashtami is the birthday of Krishna and there was a huge crowd of the city's Hindu population. All of the local temples had booths, there was wonderful handmade vegetarian indian food, they had a lovely cultural demonstration and it was all capped off by the appearance of an Indian TV/Movie star who's played Krishna in a popular TV series and a few movies. (He makes all of the Janmashtami celebrations - what a gig!)
Anyway, I was pretty inspired by what he said and came home, thinking about the hysterectomy complications I was suffering. (I'm closer to becoming Cricket than I'd like to admit.) I started doing some free-associating while lying in bed, picturing myself sitting in front of Krishna (and, yeah, he was blue... I've gotta find out why they paint him blue...). I decided to pull in some other experts and visualized Jesus off to the left, and then for balance sake, put Mohammad on the right. (No specific order here, don't want you to think I was exercising any favoritism. I just happened to be thinking of Krishna first, so he got the center position - plus, it was his birthday, so he had dibbs.) I thought Jesus and Mohammad were good to have on hand - both of them were very pro female and I assumed that they'd have some essential insight for me. (If you don't believe me about Mohammad, go read the Koran. He revolutionized women's lives in his tribal culture.)
Anyway, so I'm sitting in front of these three gentlemen, and they're looking very happy to be visiting with me. (Apparently, they like me. That's nice to know.) I asked them about how to deal with the side effects of the hysterectomy, of trying to rediscover my essential feminity without having a uterus or ovaries. I looked first to Jesus - he's known me longer, you understand, I thought he might have some immediate insight. He kinda smiled and shrugged and looked down at the other two guys. Mohammad pulled a long drag on his water pipe and had a beatific "I dunno" look on his face and Krishna just laughed. I didn't like this response - a bit miffed, I looked back at Jesus and he said, "We haven't a clue. We're boys."
Well! That's a fine response! Some help they were! I informed them of this failing on their part and they just smiled at me and asked what did I expect?? Jesus reminded me he was supposed to be celibate - he understood that this was a very important issue, but how'd he know what to do in this case?
So, I asked, I need a goddess or two to talk to about this. Where are they???
At this point, Krishna just laughed and pointed behind me. I turned and looked, but no one was there. After a second or two of letting this sink in, he told me that if I held up a mirror, I'd see all of the goddesses I'd need.
Of course, a mirror appeared in my hands. (This is free associating. You can do that...) I gazed into the glass and behind me was a cascade of goddesses, one behind the other, smiling at me. I snapped my head around and looked back over my shoulder - but there was no one there. I looked back in the mirror - and there they were again, waving at me.
As I was still gazing in the mirror, Krishna laughed and told me that I could look behind me as much as I wanted, but the women I saw would not be found there. They were within me. I had to find the way to open the door to them, allow them to flow through me, find me, feed me. I had to be the Goddess and then the answers would follow.
As he spoke, I looked closer at the women who were gazing back at me. A single breasted Amazon warrior was off to the right, with a knowing smile on her face. Her armor was incredible - it was brass, forged single-breasted, with the Aegis (medusa's face) on the plate. Athena was there as well as her mother, clever Metis; Kali the destroyer; Gaia; Aphrodite; Hera; Mary Magdalene; the Virgin of Guadalupe... there appeared legions, all of them representing the kaleidescopic character of the essential Female. I could sense that they all "had my back."
So, there it is. And now, I'm in BookPeople in Austin, the World's Coolest Bookstore, writing this all down and sending it into the ether for you to read. I can't help but wonder what you will think, whoever "you " are - my dear friends, my wonderful and wacky family, some stranger who's looked up "breast cancer" on the web and happened to find this on one of her deeper Google pages. I wonder if you've read the above and are scandalized. I wonder if you get this... but as they say in some enlightened circles, what other people think of us is none of our business. So, I'm going to trust you...
I'll try to write again soon.
Thank God, that's not the case.
The chemo has been fine, believe it or not. I'm simply amazed. Quite frankly, I was prepared to be feeling like hell for the next few months and it's rather a pleasant shock that I'm doing so well. I'm almost not sure what to do with myself... My friend Ingeborg has been chastising me to take a break, to use the time to take a breather, but I like what I do, so I'm doing it. Arnaud is keeping me pretty busy - or as busy as I'll let him keep me. I had to turn away work for the first time last week and it really wrenched me. Hated it. But it was the right thing to do for both of us - I do go down at times and when that happens, nothing gets done, which is a bad place for both him and me to find ourselves in if we've got a deadline. So, shocking as it might be, I'm trying to make some pretty adult choices, but overall, life is fine.
I'm also the content specialist for a local museum's new set of permanent exhibits. That's been GREAT. I can't give the details, but I'm working for two people I have a huge amount of respect for and to be on their team is a pretty heady thing!
The third leg of my busy-ness these months is Olivewood Cemetery. It's the first incorporated African American Cemetery in Houston, dating from 1875. I'm on the board of directors and we're busy working on building a plan for the cemetery's future. It's an absolutely FASCINATING place. Anyone who's not heard me cluck about this might be forwarned not to get me started during pleasant conversation. It's highly addictive! We've evidence of west African burial practices and other neat things that I can't go into now. Our group, The Descendants of Olivewood, are battling with another group for stewardship of the cemetery and it's been a very interesting process. We got to court on November 1 and then mediation on November 7th - I'll be better able to describe what we're up to after that point. Let's just say it's been quite the growth process.
And, oh yeah, there's the cancer. Or, rather, there's not the cancer. But there is the chemo, as well as the associated side effects of everything else I've been through.
First, the chemo: Neither the intravenous chemo or the pills have caused any of the extreme side effects yet. I am loosing my lovely hair, however, and am leaving a light trail of curly hairs wherever I go. I never thought I'd be so upset to see the wacky curls go, but you know, I've finally decided that they suit me!! So, I'm hoping they come back and stay that way. I was in the oncologist's office two weeks ago and happened to bump into my doc while I was on my way to the chemo room; her eyes got wide and, astonished, she said, "you look good!" Uh... what, was she expecting?? Is she going to try harder next time to bring me closer to death's door?? I sat and thought about that response the whole time I was getting my IV...
Secondly, the hysterectomy: It's playing havoc with me. I was so dreadfully afraid of having my ovary and uterus out, but told the docs to do the surgery anyway. I knew it would ultimately save my life. The ovary was determined to go wacky - when they yanked it, it was the size of a large orange and the uterus had a fibroid that was going "bad". Three years ago, I had to have the right one pulled and when it was finally cut out, it weighed a pound and was the size of a large grapefruit. (Yes, I'm aware of the citrus theme...)
We're all adults here, so I can be frank; my biggest fear has been the of loss of my sex drive, that happy alive feeling when all of the hormones are flowing in the right direction... I was afraid I'd become something like our cat Cricket, kinda fat, kinda lazy, really kinda nuts... a dull creature with her essential creative force lost forever.
Charles and I went to the city-wide Janmashtami celebration at the George R. Brown convention center last weekend. (I'm still on topic here... small diversion...) Janmashtami is the birthday of Krishna and there was a huge crowd of the city's Hindu population. All of the local temples had booths, there was wonderful handmade vegetarian indian food, they had a lovely cultural demonstration and it was all capped off by the appearance of an Indian TV/Movie star who's played Krishna in a popular TV series and a few movies. (He makes all of the Janmashtami celebrations - what a gig!)
Anyway, I was pretty inspired by what he said and came home, thinking about the hysterectomy complications I was suffering. (I'm closer to becoming Cricket than I'd like to admit.) I started doing some free-associating while lying in bed, picturing myself sitting in front of Krishna (and, yeah, he was blue... I've gotta find out why they paint him blue...). I decided to pull in some other experts and visualized Jesus off to the left, and then for balance sake, put Mohammad on the right. (No specific order here, don't want you to think I was exercising any favoritism. I just happened to be thinking of Krishna first, so he got the center position - plus, it was his birthday, so he had dibbs.) I thought Jesus and Mohammad were good to have on hand - both of them were very pro female and I assumed that they'd have some essential insight for me. (If you don't believe me about Mohammad, go read the Koran. He revolutionized women's lives in his tribal culture.)
Anyway, so I'm sitting in front of these three gentlemen, and they're looking very happy to be visiting with me. (Apparently, they like me. That's nice to know.) I asked them about how to deal with the side effects of the hysterectomy, of trying to rediscover my essential feminity without having a uterus or ovaries. I looked first to Jesus - he's known me longer, you understand, I thought he might have some immediate insight. He kinda smiled and shrugged and looked down at the other two guys. Mohammad pulled a long drag on his water pipe and had a beatific "I dunno" look on his face and Krishna just laughed. I didn't like this response - a bit miffed, I looked back at Jesus and he said, "We haven't a clue. We're boys."
Well! That's a fine response! Some help they were! I informed them of this failing on their part and they just smiled at me and asked what did I expect?? Jesus reminded me he was supposed to be celibate - he understood that this was a very important issue, but how'd he know what to do in this case?
So, I asked, I need a goddess or two to talk to about this. Where are they???
At this point, Krishna just laughed and pointed behind me. I turned and looked, but no one was there. After a second or two of letting this sink in, he told me that if I held up a mirror, I'd see all of the goddesses I'd need.
Of course, a mirror appeared in my hands. (This is free associating. You can do that...) I gazed into the glass and behind me was a cascade of goddesses, one behind the other, smiling at me. I snapped my head around and looked back over my shoulder - but there was no one there. I looked back in the mirror - and there they were again, waving at me.
As I was still gazing in the mirror, Krishna laughed and told me that I could look behind me as much as I wanted, but the women I saw would not be found there. They were within me. I had to find the way to open the door to them, allow them to flow through me, find me, feed me. I had to be the Goddess and then the answers would follow.
As he spoke, I looked closer at the women who were gazing back at me. A single breasted Amazon warrior was off to the right, with a knowing smile on her face. Her armor was incredible - it was brass, forged single-breasted, with the Aegis (medusa's face) on the plate. Athena was there as well as her mother, clever Metis; Kali the destroyer; Gaia; Aphrodite; Hera; Mary Magdalene; the Virgin of Guadalupe... there appeared legions, all of them representing the kaleidescopic character of the essential Female. I could sense that they all "had my back."
So, there it is. And now, I'm in BookPeople in Austin, the World's Coolest Bookstore, writing this all down and sending it into the ether for you to read. I can't help but wonder what you will think, whoever "you " are - my dear friends, my wonderful and wacky family, some stranger who's looked up "breast cancer" on the web and happened to find this on one of her deeper Google pages. I wonder if you've read the above and are scandalized. I wonder if you get this... but as they say in some enlightened circles, what other people think of us is none of our business. So, I'm going to trust you...
I'll try to write again soon.
Monday, August 20, 2007
Chock full of parenthesis
I'm all over the place tonight. I wish I had some wonderful, cogent theme to follow for you - I've started this a half dozen times, once actually talking about the Jupiter symphony the radio station was playing for Mozart's birthday - but none of it is real. (actually, the Jupiter was pretty fabulous:) What's real right now is - I can't sleep.
I've had to resort to OTC sleeping aids. I'm even dabbing Origin's sleep elixir on my head and tummy before I go to sleep. Warm milk, hot tea...can't do a hot bath thanks to "Rover", my drain. (I sometimes call it "Spott". Same thing...it's just my constant companion, hanging on my right side.)
I've not had sleeplessness like this in a long time. I used to have a hard time with it a few years ago, but that was different - I was waking every night around 3 a.m., my mind spinning like a top. I'd get up, curse up a silent storm so I didn't wake Charles, and then try to read or something. And then, one sunday when I happened to actually go to church, I heard the reading about Samuel being called by God in the middle of the night. It was a nice parallel and I thought, "what the hell??" and started calling my sleepless nights my "Samuel nights." I'd get out my journal and then just write whatever it was that was rattling around in my head until I'd wear myself out, then go back to sleep.
This went on for about 3 months, about 3 or 4 nights a week. Finally, one day I saw something wierd, some guy doing something odd, and I thought, "Wow. I hope I wake up tonight...I want to write about that!" And right then, I knew it. My Samuel nights were over. I didn't wake up again for years!
So, what the heck do I call these evenings, when I toss and turn until 3 trying desperately to sleep?? Heck if I know. Frustrating as hell?? A special form of torture?? How about "Sleepless Torment"?? I wish I could find some soft and fluffy way to describe these nights and make them a wonderful life lesson, but I can't. They just suck.
It's not like I'm not trying things... Mom's been railing at me to get more exercise. Attie and I have been going on 45 minute walks on the bayou. (That's him up there in the picture. And, okay. We just started yesterday. Tonight, about half way through, he pooped out and laid upside down in the grass with his four platter-sized feet in the air, just to make his point. For those of you wondering, NO, getting exercise yesterday DID NOT help me sleep last night!) [Atticus slept wonderfully though. Snored all night.] I didn't take a nap today, which I'm sure will help. I'm working until I'm tired, instead of thinking about being tired...(okay, yes, you're pointing out that I'm sitting here writing about it... don't be a stickler!)
Anyway, so why is this happening?? A few reasons. As most of you know, I lost my girl-parts at the same time that I lost a boob. They yanked my uterus, tubes and my remaining ovary, which was going nuclearm, about the size of a large orange when it was removed. Good thing to take it out. The uterus was full of benign tumors as well - so, all in all, it's a very positive event that all those nasty parts have gone bye-bye. But, this also means that all the hormones they were pumping (POURING!) into my system are also bye-bye, and I'm getting the sense that my body has developed a jones for them... kinda like a crack addict, just searching out for an estrogen fix...
Beyond chemical, there's the emotional component as well. Now, don't get me wrong - I know I'm a very VERY VERYVERY blessed woman. I'm so freaking lucky with the way this has all turned out that I hardly have any room to complain ! I mean, there are women who are NEEDLESSLY dying right now from this disease because they didn't have access to care, or didn't have the information they needed to recognize what was going on in their bodies, or are dealing with a virulent form of the disease that's ravaging their bodies as they watch in the mirror... No - my life is very good, boobless or not.
Buuuuutttt... I have gone through a dramatic life change, and it's not something to be discounted.
What is a woman? It's not her parts. We all know that and it's a no brainer...except it's not. There's knowing something in your head, and then knowing something in your heart. And, deep down, there's still that little girl in me that want's to be "pretty." "Cute." "Beautiful." She wants to wear pretty dresses and feel lovely, have long flowing hair and be a woman radiating fecundity and health.
I am beautiful - I've got that now - but there is that moment in the mirror in the morning where the Divine Sense of Humor smiles back at me, asking me to see my true beauty beyond my goofy hair, my divoted chest and my scarred abdomen. I can see it reflected there, but some days it takes some work.
I can't believe I'm putting this here, but feeling like I was a fully fledged girl was always difficult for me. I felt so outsized, and we moved around a lot so I was always the wierd kid in school. It was tortuous, but it gave me a very strong inner life that I thoroughly enjoyed. It also left me feeling kinda alien, though. I've spent a great deal of my adult life coming to terms with that and searching for my own beauty. And, true to form, I finally got it just before I was diagnosed with cancer the first time.
It was as if God said, "Okay! Good! You got it... you're beautiful! Now... I'm taking away your hair... are you still beautiful???" And the answer was yes. And now, God's saying..."Okay, now we're taking away a breast and what you think is your fertility...What's the verdict??" And, yeah, I know the answer to this one, and yeah, I get it.... but what a lesson!!
I've maintained before all of this that God put me on the planet because She knew I'd get all of her jokes. This is taking it a bit too far!
So that's it for tonight. Please forgive me for being mildly insipid, and please, before you sleep tonight, say a prayer for all of my bosom sisters who are dealing with this disease, in particular my friend Dana's mom Ruth, who's not in good shape at all. And remember to support breast cancer research funding - this is a disease we can all defeat.
I'm going to bed...maybe I'll actually fall asleep this time...
OH! By the way, here's the status on my treatments. Until "Rover" comes out, I'm not getting any treatments. They're all on hold until the drain is out. I find out tomorrow whether it's coming out and if so, I get my first dose of Abraxane this friday. I don't know when the Xeloda starts. (BTW - a friend pointed out that for some reason prescription drugs need to have Xs in them... and since I have two drugs with Xs, with one of them starting with an x, I must be really getting the good stuff! :) I'll post when the situation changes. And yeah, I'm going to lose my hair again. Sheesh.
I've had to resort to OTC sleeping aids. I'm even dabbing Origin's sleep elixir on my head and tummy before I go to sleep. Warm milk, hot tea...can't do a hot bath thanks to "Rover", my drain. (I sometimes call it "Spott". Same thing...it's just my constant companion, hanging on my right side.)
I've not had sleeplessness like this in a long time. I used to have a hard time with it a few years ago, but that was different - I was waking every night around 3 a.m., my mind spinning like a top. I'd get up, curse up a silent storm so I didn't wake Charles, and then try to read or something. And then, one sunday when I happened to actually go to church, I heard the reading about Samuel being called by God in the middle of the night. It was a nice parallel and I thought, "what the hell??" and started calling my sleepless nights my "Samuel nights." I'd get out my journal and then just write whatever it was that was rattling around in my head until I'd wear myself out, then go back to sleep.
This went on for about 3 months, about 3 or 4 nights a week. Finally, one day I saw something wierd, some guy doing something odd, and I thought, "Wow. I hope I wake up tonight...I want to write about that!" And right then, I knew it. My Samuel nights were over. I didn't wake up again for years!
So, what the heck do I call these evenings, when I toss and turn until 3 trying desperately to sleep?? Heck if I know. Frustrating as hell?? A special form of torture?? How about "Sleepless Torment"?? I wish I could find some soft and fluffy way to describe these nights and make them a wonderful life lesson, but I can't. They just suck.
It's not like I'm not trying things... Mom's been railing at me to get more exercise. Attie and I have been going on 45 minute walks on the bayou. (That's him up there in the picture. And, okay. We just started yesterday. Tonight, about half way through, he pooped out and laid upside down in the grass with his four platter-sized feet in the air, just to make his point. For those of you wondering, NO, getting exercise yesterday DID NOT help me sleep last night!) [Atticus slept wonderfully though. Snored all night.] I didn't take a nap today, which I'm sure will help. I'm working until I'm tired, instead of thinking about being tired...(okay, yes, you're pointing out that I'm sitting here writing about it... don't be a stickler!)
Anyway, so why is this happening?? A few reasons. As most of you know, I lost my girl-parts at the same time that I lost a boob. They yanked my uterus, tubes and my remaining ovary, which was going nuclearm, about the size of a large orange when it was removed. Good thing to take it out. The uterus was full of benign tumors as well - so, all in all, it's a very positive event that all those nasty parts have gone bye-bye. But, this also means that all the hormones they were pumping (POURING!) into my system are also bye-bye, and I'm getting the sense that my body has developed a jones for them... kinda like a crack addict, just searching out for an estrogen fix...
Beyond chemical, there's the emotional component as well. Now, don't get me wrong - I know I'm a very VERY VERYVERY blessed woman. I'm so freaking lucky with the way this has all turned out that I hardly have any room to complain ! I mean, there are women who are NEEDLESSLY dying right now from this disease because they didn't have access to care, or didn't have the information they needed to recognize what was going on in their bodies, or are dealing with a virulent form of the disease that's ravaging their bodies as they watch in the mirror... No - my life is very good, boobless or not.
Buuuuutttt... I have gone through a dramatic life change, and it's not something to be discounted.
What is a woman? It's not her parts. We all know that and it's a no brainer...except it's not. There's knowing something in your head, and then knowing something in your heart. And, deep down, there's still that little girl in me that want's to be "pretty." "Cute." "Beautiful." She wants to wear pretty dresses and feel lovely, have long flowing hair and be a woman radiating fecundity and health.
I am beautiful - I've got that now - but there is that moment in the mirror in the morning where the Divine Sense of Humor smiles back at me, asking me to see my true beauty beyond my goofy hair, my divoted chest and my scarred abdomen. I can see it reflected there, but some days it takes some work.
I can't believe I'm putting this here, but feeling like I was a fully fledged girl was always difficult for me. I felt so outsized, and we moved around a lot so I was always the wierd kid in school. It was tortuous, but it gave me a very strong inner life that I thoroughly enjoyed. It also left me feeling kinda alien, though. I've spent a great deal of my adult life coming to terms with that and searching for my own beauty. And, true to form, I finally got it just before I was diagnosed with cancer the first time.
It was as if God said, "Okay! Good! You got it... you're beautiful! Now... I'm taking away your hair... are you still beautiful???" And the answer was yes. And now, God's saying..."Okay, now we're taking away a breast and what you think is your fertility...What's the verdict??" And, yeah, I know the answer to this one, and yeah, I get it.... but what a lesson!!
I've maintained before all of this that God put me on the planet because She knew I'd get all of her jokes. This is taking it a bit too far!
So that's it for tonight. Please forgive me for being mildly insipid, and please, before you sleep tonight, say a prayer for all of my bosom sisters who are dealing with this disease, in particular my friend Dana's mom Ruth, who's not in good shape at all. And remember to support breast cancer research funding - this is a disease we can all defeat.
I'm going to bed...maybe I'll actually fall asleep this time...
OH! By the way, here's the status on my treatments. Until "Rover" comes out, I'm not getting any treatments. They're all on hold until the drain is out. I find out tomorrow whether it's coming out and if so, I get my first dose of Abraxane this friday. I don't know when the Xeloda starts. (BTW - a friend pointed out that for some reason prescription drugs need to have Xs in them... and since I have two drugs with Xs, with one of them starting with an x, I must be really getting the good stuff! :) I'll post when the situation changes. And yeah, I'm going to lose my hair again. Sheesh.
Monday, August 6, 2007
Of Holy Dirt and other Musings
I just read my dear sister-in-law's email to me about the famous Loretto Chapel in Santa Fe. Rosemary was born there (not too long ago!) and grew up hearing the people around her talk about the mixture of old-world catholicism and indian mysticism that permeates the area. The .pps she sent was very interesting - there are three mysteries about the Chapel's Miraculous Staircase, two of which I knew. 1. The staircase is built without a central support (which, it must be noted, there are other staircases built today without central supports) BUT without any nails or glue. It's perfectly balanced. 2. The nuns prayed for 9 days to St. Joseph to fix their staircase issue with the mysterious master carpenter showing up on the ninth day. Apparently, the nuns were suffering from the eternal dilemma of all new home owners who decide to go the contracting route - their original builder guy left after building their chapel but neglected to give them a way up to the choir loft. (See - this is just another case for the argument of certifying contractors... and making sure they're bonded. Yes, I know, this was in the early 1800s, but still...)
But the third mystery is about the wood that the staircase is built of. Amazingly - and you gotta remember, this strange dude just wandered up, started building without help and then walked off without being paid - NONE of the wood that went into the staircase came from anywhere near the Santa Fe area. Whoa. Freaky...
What a delightful story! I need to do some poking around on the 'net to understand it all, but how delicious it is to have such a lovely mystery available to be pondered and marveled at. I almost *don't* want to poke around and have the story's loveliness explained away!
This reminds me of my Big Trip around the country in 1998. Charles and I were seperated, going through what I euphamistically refer to as our "relationship calisthenics." (it was absolute hell.) I'd decided to air myself out a bit and took 6 weeks off to go tour the country and be a vagabond. It was a delicious break for me in so many ways. I'd worked to put us both through school and it had taken me 8 years to get my degree. The relationship stuff hadn't been fun for a while... I was pooped and really needed the break.
I started traveling in a westerly direction and found myself in New Mexico. My friend Sean had asked me to bring him home some Chimayo holy dirt if I ended up nearby, so, after a few nights in the local Santa Fe hostel (ewwww. Gets 1 star!) I headed up to the chapel to check out the miraculous site for myself.
It's a dingy little chapel in the middle of nowhere. It's been there since the early 1800s. (Here's the wikipedia entry on the site: http://en.wikipedia.org/wiki/Chimayo. It's got the whole story on the chapel's miraculous founding.) I went in, read the didactic info, admired the wonderful architecture and dutifully dug up a film-canister-sized serving of holy dirt for Sean and headed down the road.
A couple of weeks and a few states later, I was cruising over the Saratoga pass just north of Yosemite national park, trying to get to Mom's house from the East. (I was avoiding Bakersfield. Blech!)
What an amazing drive!! By this point in my travels, I'd seriously started gathering lots of stuff... Books, books, books. My favorite traveling companions! They were all over the back seat, their characters acting as virtual compatriots in my travels. I had all kinds of goodies from Santa Fe and Flagstaff (Flagstaff Rocky Mountain Hostel - 5 stars!) and had already filled about 5 rolls of film with the things I'd seen. The scenery around me was totally mindblowing - stygian fingers pushed up through the bedrock, with the entire landscape looking more like something out of a Tolkien novel. I expected to see Wizards and Hobbits peering out at me from behind the rocks and trees as I climbed higher into the Sierras.
Slowly, the terrain changed from green grass to melting snow patches and then to snow totally covering the ground. I made the trip with my jaw permanently dropped - each curve revealed another incredible vista more beautiful than the next. I finally decided to pull over to take a break and eat something. The ground at the rest area was totally covered in snow. I had most of the area to myself, except for a couple of guys standing outside their car... and one of them was hopping around funny, holding his butt while the other was trying to calm him down.
Hopelessly curious (not to mention nosy as all hell) I walked over to see what was going on... "My friend got stung in the ass by a bee," said the black guy about his white friend, "I don't know what to do for him..." "AND IT HURTS LIKE HELL!" interruped the other guy.
"Well," I said, "what you need is a mud poultice to pull that out."
The black guy looked around at all the snow and said "and where we going to get dirt??"
I pondered that for a moment...and then I rushed to the car, dug through three weeks of precious souvenirs, and finally found the little canister of Chimayo hold dirt under the driver's seat. It was just a matter of seconds to whip up some mud using the snow and I was back over to the two guys.
"Okay, drop your britches."
The white guy's face was priceless. He had to have been in oodles of pain, because he actually gave it about a second's thought before dropping his pants for the strange white girl with a handful of (unknown to him) holy mud. I dabbed it all over the bee sting, wiped the remainder off my hands into the snow, and said my good byes before heading back down the mountain.
I've often wondered about that guy. I wonder if his butt healed. I wonder if a mud poultice really worked. But more than that, I wonder whether his life changed after that...after having holy dirt daubed on his tukus by a strange woman on the Saratoga pass one day in June, 1998. Did he find happiness? Did his life change? Or did he need a healthy dose of antibiotics when he got home? I guess I'll never know...And I wonder about the strange carpenter who built the staircase. What odd set of circumstances led him to wander into Santa Fe at just the right time when the nuns needed him most? It could quite possibly be argued that the miracle isn't in the mysterious identity of the person - St. Joseph my foot! - but in the timing, which is something that no man (or woman!) can control or explain away. That's where God's work is really done, in bringing us together to help each other in our time of need. It's just somehow the Right Person, at the Right Time, with a nice set of tools or a film canister of Dust.
I still have some of the holy dirt, but it's from a second trip which I took several years later while visiting my darling friend, Brenda. I lost that first canister - I made it through all 10,000 miles of that trip (honestly - 10 thousand miles in six weeks!) and somehow lost my stash of dirt! I guess it had served its purpose. I made a deliberate trip to gather Sean's dirt when I had a chance to go back. My portion of that second sample is in my God-nook, on my icon wall, along with my Columbian nativity and my Tibetan prayer bowl. Maybe it's time to pull that stuff out and see if the juju is still there...So, if you see me walking around with a little smudge of mud poking out over the right side of my t-shirt collar, you'll know I'm just looking for a little bit of my own miracle...or I've just been stung by a bee. :)
But the third mystery is about the wood that the staircase is built of. Amazingly - and you gotta remember, this strange dude just wandered up, started building without help and then walked off without being paid - NONE of the wood that went into the staircase came from anywhere near the Santa Fe area. Whoa. Freaky...
What a delightful story! I need to do some poking around on the 'net to understand it all, but how delicious it is to have such a lovely mystery available to be pondered and marveled at. I almost *don't* want to poke around and have the story's loveliness explained away!
This reminds me of my Big Trip around the country in 1998. Charles and I were seperated, going through what I euphamistically refer to as our "relationship calisthenics." (it was absolute hell.) I'd decided to air myself out a bit and took 6 weeks off to go tour the country and be a vagabond. It was a delicious break for me in so many ways. I'd worked to put us both through school and it had taken me 8 years to get my degree. The relationship stuff hadn't been fun for a while... I was pooped and really needed the break.
I started traveling in a westerly direction and found myself in New Mexico. My friend Sean had asked me to bring him home some Chimayo holy dirt if I ended up nearby, so, after a few nights in the local Santa Fe hostel (ewwww. Gets 1 star!) I headed up to the chapel to check out the miraculous site for myself.
It's a dingy little chapel in the middle of nowhere. It's been there since the early 1800s. (Here's the wikipedia entry on the site: http://en.wikipedia.org/wiki/Chimayo. It's got the whole story on the chapel's miraculous founding.) I went in, read the didactic info, admired the wonderful architecture and dutifully dug up a film-canister-sized serving of holy dirt for Sean and headed down the road.
A couple of weeks and a few states later, I was cruising over the Saratoga pass just north of Yosemite national park, trying to get to Mom's house from the East. (I was avoiding Bakersfield. Blech!)
What an amazing drive!! By this point in my travels, I'd seriously started gathering lots of stuff... Books, books, books. My favorite traveling companions! They were all over the back seat, their characters acting as virtual compatriots in my travels. I had all kinds of goodies from Santa Fe and Flagstaff (Flagstaff Rocky Mountain Hostel - 5 stars!) and had already filled about 5 rolls of film with the things I'd seen. The scenery around me was totally mindblowing - stygian fingers pushed up through the bedrock, with the entire landscape looking more like something out of a Tolkien novel. I expected to see Wizards and Hobbits peering out at me from behind the rocks and trees as I climbed higher into the Sierras.
Slowly, the terrain changed from green grass to melting snow patches and then to snow totally covering the ground. I made the trip with my jaw permanently dropped - each curve revealed another incredible vista more beautiful than the next. I finally decided to pull over to take a break and eat something. The ground at the rest area was totally covered in snow. I had most of the area to myself, except for a couple of guys standing outside their car... and one of them was hopping around funny, holding his butt while the other was trying to calm him down.
Hopelessly curious (not to mention nosy as all hell) I walked over to see what was going on... "My friend got stung in the ass by a bee," said the black guy about his white friend, "I don't know what to do for him..." "AND IT HURTS LIKE HELL!" interruped the other guy.
"Well," I said, "what you need is a mud poultice to pull that out."
The black guy looked around at all the snow and said "and where we going to get dirt??"
I pondered that for a moment...and then I rushed to the car, dug through three weeks of precious souvenirs, and finally found the little canister of Chimayo hold dirt under the driver's seat. It was just a matter of seconds to whip up some mud using the snow and I was back over to the two guys.
"Okay, drop your britches."
The white guy's face was priceless. He had to have been in oodles of pain, because he actually gave it about a second's thought before dropping his pants for the strange white girl with a handful of (unknown to him) holy mud. I dabbed it all over the bee sting, wiped the remainder off my hands into the snow, and said my good byes before heading back down the mountain.
I've often wondered about that guy. I wonder if his butt healed. I wonder if a mud poultice really worked. But more than that, I wonder whether his life changed after that...after having holy dirt daubed on his tukus by a strange woman on the Saratoga pass one day in June, 1998. Did he find happiness? Did his life change? Or did he need a healthy dose of antibiotics when he got home? I guess I'll never know...And I wonder about the strange carpenter who built the staircase. What odd set of circumstances led him to wander into Santa Fe at just the right time when the nuns needed him most? It could quite possibly be argued that the miracle isn't in the mysterious identity of the person - St. Joseph my foot! - but in the timing, which is something that no man (or woman!) can control or explain away. That's where God's work is really done, in bringing us together to help each other in our time of need. It's just somehow the Right Person, at the Right Time, with a nice set of tools or a film canister of Dust.
I still have some of the holy dirt, but it's from a second trip which I took several years later while visiting my darling friend, Brenda. I lost that first canister - I made it through all 10,000 miles of that trip (honestly - 10 thousand miles in six weeks!) and somehow lost my stash of dirt! I guess it had served its purpose. I made a deliberate trip to gather Sean's dirt when I had a chance to go back. My portion of that second sample is in my God-nook, on my icon wall, along with my Columbian nativity and my Tibetan prayer bowl. Maybe it's time to pull that stuff out and see if the juju is still there...So, if you see me walking around with a little smudge of mud poking out over the right side of my t-shirt collar, you'll know I'm just looking for a little bit of my own miracle...or I've just been stung by a bee. :)
Saturday, July 28, 2007
Can't sleep
I imagine that there are hundreds of blogs across the 'net that have this as the title. What a pitiful state of affairs when the only reason we hit the keyboard is that sleep is defying our will and we are somehow, for some reason, still awake.
Such is the state I'm in now. I'm sitting on my futon, in the main room, with my precious pit bull, Atticus, snoring pleasantly beside me on the sofa. My stitches itch, I've got a cough that wracks my abdominal cut everytime I have to hack and it feels like someone is poking a hot iron in to the right side of my abodomen. I'd much rather be in the land of nod.
But the middle of the night is also the only time I have available to write! My days are so full right now - I'm having a ball with my Mom here, and with my sister Katie now added to the mix, it's been wonderful.
I was worried about having Katie come. I've not handled our relationship well the last decade or so. We're so alike in some ways and so dramatically different...I'm really having fun with her - it's been the same wonderful release that I'm enjoying with Mom - for some reason, all of the chips have finally, FINALLY fallen off of my shoulders. Is it the cancer? The Effexor I'm taking to deal with the Tamoxifin? Did I suddenly grow up at 40, independent of any of the other crap I've been dealing with? Why are some parts of life getting easier right now?
I'm a bit of a polly-anna - I want my experiences to have a jewel buried in the middle of them, the quintessence of the diamond in the rough. Inside, I'm giving cancer the credit for all of this, that the disease, while it has been trying to kill me, in many ways is saving my life by cleaning out the detris of the other traumas I've been through and has returned vitally important parts of myself back to me - my self respect, my sense of humor and of the absurd, a knowledge of what is really, truly important and what is just plain crap. I have precious little patience with crap now. I can feel myself operating from my center, as if my fairy god mother or the good witch of the north by north east finally cleared the spell that obscured the road from my eyes.
Not all is clear yet, but I can see the way to finding some Windex to help things along.
There have been many poignant moments in all of this. Long distance family relationships create a house of mirrors - different parts of the other's personality, habits, life become distorted in my perception simply due to lack of personal, day to day contact, regardless of how often we speak on the phone. The reality of a person is lost until you start living with them again - until then, parts of the relationship are still trapped in time, like a note in a bottle.
I've discovered, from living with Mom on a daily basis again, her real humanity, which is something that you never get as a kid, so until this point of time, some of that unhuman, superhuman quality of her hung around. Now I know she's a fellow adult. Not "merely" a fellow adult - it's so much more amazing than that! - but at the same time, she is just a fellow adult, not the woman who could do no wrong, as I'd created her in my memory. Nor is she any longer the woman who held my self esteem under lock and key, dependent on her approval. That's also gone - instead I can hear her and see her and just know she's "Bunny" and that if something falls out of her mouth that's critical, that I can take it on or not, and see it as more of something describing who she is rather than who I am.
What's more, now that I've relaxed and quit taking things personally, I can see that she feels more free to simply be herself. What a wonderful compliment! She's comfortable around me as a friend! How many daughters and mothers can enjoy that kind of relationship?! I've rediscovered how funny and irreverent she is, how very intelligent and beautiful she is. I can admire her graciousness and her huge heart. It's created such a sense of gratitude, but at the same time a very real sense of loss - how many years were lost by my tilting against her personality, being angry, taking things personally, keeping parts of myself hidden from her? What a shame!
So, it's been an amazing interlude here at the house on Frasier Street. I'm enjoying having a home full of people, as only a true extrovert can, but more than that, I'm so enjoying the return of my family into my heart. The world seems so much less lonely now.
Good night.
Such is the state I'm in now. I'm sitting on my futon, in the main room, with my precious pit bull, Atticus, snoring pleasantly beside me on the sofa. My stitches itch, I've got a cough that wracks my abdominal cut everytime I have to hack and it feels like someone is poking a hot iron in to the right side of my abodomen. I'd much rather be in the land of nod.
But the middle of the night is also the only time I have available to write! My days are so full right now - I'm having a ball with my Mom here, and with my sister Katie now added to the mix, it's been wonderful.
I was worried about having Katie come. I've not handled our relationship well the last decade or so. We're so alike in some ways and so dramatically different...I'm really having fun with her - it's been the same wonderful release that I'm enjoying with Mom - for some reason, all of the chips have finally, FINALLY fallen off of my shoulders. Is it the cancer? The Effexor I'm taking to deal with the Tamoxifin? Did I suddenly grow up at 40, independent of any of the other crap I've been dealing with? Why are some parts of life getting easier right now?
I'm a bit of a polly-anna - I want my experiences to have a jewel buried in the middle of them, the quintessence of the diamond in the rough. Inside, I'm giving cancer the credit for all of this, that the disease, while it has been trying to kill me, in many ways is saving my life by cleaning out the detris of the other traumas I've been through and has returned vitally important parts of myself back to me - my self respect, my sense of humor and of the absurd, a knowledge of what is really, truly important and what is just plain crap. I have precious little patience with crap now. I can feel myself operating from my center, as if my fairy god mother or the good witch of the north by north east finally cleared the spell that obscured the road from my eyes.
Not all is clear yet, but I can see the way to finding some Windex to help things along.
There have been many poignant moments in all of this. Long distance family relationships create a house of mirrors - different parts of the other's personality, habits, life become distorted in my perception simply due to lack of personal, day to day contact, regardless of how often we speak on the phone. The reality of a person is lost until you start living with them again - until then, parts of the relationship are still trapped in time, like a note in a bottle.
I've discovered, from living with Mom on a daily basis again, her real humanity, which is something that you never get as a kid, so until this point of time, some of that unhuman, superhuman quality of her hung around. Now I know she's a fellow adult. Not "merely" a fellow adult - it's so much more amazing than that! - but at the same time, she is just a fellow adult, not the woman who could do no wrong, as I'd created her in my memory. Nor is she any longer the woman who held my self esteem under lock and key, dependent on her approval. That's also gone - instead I can hear her and see her and just know she's "Bunny" and that if something falls out of her mouth that's critical, that I can take it on or not, and see it as more of something describing who she is rather than who I am.
What's more, now that I've relaxed and quit taking things personally, I can see that she feels more free to simply be herself. What a wonderful compliment! She's comfortable around me as a friend! How many daughters and mothers can enjoy that kind of relationship?! I've rediscovered how funny and irreverent she is, how very intelligent and beautiful she is. I can admire her graciousness and her huge heart. It's created such a sense of gratitude, but at the same time a very real sense of loss - how many years were lost by my tilting against her personality, being angry, taking things personally, keeping parts of myself hidden from her? What a shame!
So, it's been an amazing interlude here at the house on Frasier Street. I'm enjoying having a home full of people, as only a true extrovert can, but more than that, I'm so enjoying the return of my family into my heart. The world seems so much less lonely now.
Good night.
Saturday, July 21, 2007
I'm at home
I've been back at the house for a day. So far, I'm doing pretty good - I feel a little lopsided, since I've no boob on the right side now. Just rolls of skin wrapped around a tube that hangs down to a Jackson-Pratt drain, which is essentially a bulb syringe. The syringe itself is suspended around my neck on a cotton loop, and just hangs by my side in a pouch my sister-in-law made for me. Every few hours or so I have to empty the syringe and measure the lymphatic fluid draining from the site. Remember, they took my lymph nodes as well as my breast, so that whole area is draining while it heals.
The hysterectomy site is where most of the pain is coming from. I'm strong enough to deal with both of the surgeries, and frankly, the pain I have is not bad, thanks to my friend Vicodin:) It helps get me through the sharpness of some of the abdominal cut and as long as I take it slow, I do pretty well. I kinda move along like Granny Grumps, as my friend Vera used to call it - makes me smile to remember he saying that.
Father Dan called around 2 today. What a surreal experience! We were discussing the Sacrament of the Sick for me and when we might do it. Talking to him suddenly pulls the covers off of me for a little while - I'm raw, revealing what I'm truly thinking and feeling and tears welled up almost immediately as I heard his voice.
It reminds me of my Aunt Mary. You may have heard me talk about her before - Aunt Mary was my grandmother on my mom's side. I was the first grandchild and the word "grandma" made her feel old, so she insisted, much to my mother's disgust, that I call her "Aunt Mary." It stuck and my siblings and I were her only grandchildren that called her that, while the rest of the grand kids were told to call her grandma whether she liked it or not!
Well, Aunt Mary was deathly afraid of dying. Really... Scared the crap out of her. She became a widow in 1978 when my grandfather ("Grandpa" - he was my only normal grandparent!) unexpectedly died of a heart attack (and of course there's a story about that, but you'll have to wait for another entry to get it!). She had lots of anxiety about the final moments.
In 2000, Aunt Mary had congestive heart failure and it was serious enough for her to be put in the hospital. I come from a medical family - she was an RN as well as my mom and my aunt Janice, so everyone is pretty frank about things. Mom called me up and told me things didn't look good and that I should probably book a flight to Fresno, and maybe I should call my brother John, who also lives in Houston.
John and I both got tickets using American Express points. I travel to Fresno often to see the family, but John can't get there as easily since he's highly fertile and has kids everywhere, so the California portion of the family doesn't see him very often. So it was a pleasant surprise that he could go. We arrived at the hospital and were greeted by my Uncle Allan who was very
concerned that we would strain Aunt Mary, and that we should go in one by one.
I should mention that no one had told her we were coming. So, when she saw me walk into the room, she started crying... it had to be bad if I'd made the trip. I held her while she cried and told her how much I loved her and calmed her down.
Then John came in and Aunt Mary started crying very hard... if JOHN had flown out, things HAD TO BE BAD! She was unconsolable and we had a terrible time calming her down.
There was a third surprise however - My mom had made arrangements for the hospital priest to come give Aunt Mary the sacrament of the sick. Aunt Mary was a devout Catholic and Mom thought it would be a good thing for her to go through the sacrament. The priest walked into the room and Aunt Mary totally lost it... She practically ran out of the hospital at the first opportunity and went on to live for another 4 years. I don't know if she ever got the sacrament...
So, when Father Dan called to talk about giving me the sacrament, amazingly I had the same
feeling. "OhMyGod... this is so real! I have CANCER!" I'd been through hours of surgery, days of recovery in the hospital, limping around the house, bossing around my husband (and wow has that made me popular) but it took the priest calling for me to finally getting it through my head that something was wrong! AAAAARRRGGHHHHHH!!!!!!
But the sacrament isn't Last Rites anymore. It's a prayer by the faithful, using annointing of oil, to call on the Holy Spirit to heal the sick person, and I'm all over that... bring it on! It's going to be next Sunday at UH, where Charles and I were married 16 years ago.
I've not quite gone running screaming out of the house at the call, but it's certainly popped me in the butt, so to speak and woke me up. Holy Spirit, Buddha, Krishna, Allah, Buddy Jesus - all of
the above, you're officially invited to my celebration of the sacrament next sunday - I'll give you front row seats!!
Thursday, July 12, 2007
Why Dear Amy?
"Dear Amy..."
This isn't my first bout with breast cancer. When this happened last year, I journaled about the experience but did it privately to my friend Amy in Denver, and just told her to store them for me...she'd know what to do with them if something needed to be done with them. And each of them had the subject line "Dear Amy."
And now, here I am again, facing down a temporary hairless existence and I'm thinking, "What the hell!" and have decided not to hide. So, for those of you who choose to, join me on the ride through the wonders of dealing with the disease.
It's not that bad... Okay, maybe it's not great, but I promise to throw you all of the diamonds I find along the way;)
This isn't my first bout with breast cancer. When this happened last year, I journaled about the experience but did it privately to my friend Amy in Denver, and just told her to store them for me...she'd know what to do with them if something needed to be done with them. And each of them had the subject line "Dear Amy."
And now, here I am again, facing down a temporary hairless existence and I'm thinking, "What the hell!" and have decided not to hide. So, for those of you who choose to, join me on the ride through the wonders of dealing with the disease.
It's not that bad... Okay, maybe it's not great, but I promise to throw you all of the diamonds I find along the way;)
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