Conversation overheard on the way to Kellen’s baseball practice last night:
Kellen: “I love baseball. I want to play with Sammy Sosa sometime.”
Brayden: “Who’s that?”
Kellen: “You know, a real ball player. Like Barry Bonds. I want to play baseball with one of them.”
Brayden: “Kellen, first you have to go to middle school. Then high school. Then college. And grow up. Then by the time you are old enough to play, that Sammy guy will BE. DEAD.”
Poor Sammy. I don’t know where these kids come up with this stuff, but it doesn’t sound too hopeful for *him*, does it?
Wednesday, September 27, 2006
Tuesday, September 26, 2006
LITTLE KNOWN LATE TERM EFFECTS
There are many late term effects from chemo and radiation for which cancer-kids have to watch once treatment ends. Apparently, the most prevalent for Kendrie appears to be: extreme un-coordination. **
After tripping over her own feet at soccer practice tonight and poking herself in the eye, her coach thought she had gotten dirt in her eye so he poured water over her face to try and wash it out. She came over to where I was sitting on the sidelines to get a Kleenex to dry off her face, and asked me, in the most pitiful voice possible, “Why did God give us fingers, if he knew we were just going to poke ourselves in the eye with them????”
Well, honey, I’m not sure. But I’ll put that question on my list for someday when I see him, right behind questioning him about war and famine …. Why, oh why, must we have fingers?
**If you think I’m going to admit fault in this situation, you’re crazy. My nickname in high school might have been “Klutz”, but my genetics and DNA will NOT be taking the blame for HER lack of coordination. I’m blaming chemo, and nothing you say can change my mind!
PS. Thanks to all of you who ate at your local Chili’s for lunch or dinner yesterday. The kids and I met friends there for dinner and had a really nice time. And I would like to publicly say THANK YOU to the anonymous person who bought our dinner for us. {I think it was you, kind lady in the lavender scrubs who recognized Kendrie and came to the table and said hello, although the waiter wouldn’t tell us, so I can’t be sure!} You probably didn’t know this, but the other little girl at our table (Haley from middle Georgia) was a fellow cancer patient as well, recovered several years from treatment for Wilms Tumor ….. so your picking up the tab was a kindness to both of our cancer families, and we really appreciated it!! I know St. Judes did, too! But I still would have liked to say thank you in person!
PSS. Don’t forget that Thursday is a fundraiser day for the Make-A-Wish Organization at Cold Stone Creamery ..... eating ice cream is a sacrifice that I guess I’ll just *have* to make …. for the good of the children .... (sigh)
After tripping over her own feet at soccer practice tonight and poking herself in the eye, her coach thought she had gotten dirt in her eye so he poured water over her face to try and wash it out. She came over to where I was sitting on the sidelines to get a Kleenex to dry off her face, and asked me, in the most pitiful voice possible, “Why did God give us fingers, if he knew we were just going to poke ourselves in the eye with them????”
Well, honey, I’m not sure. But I’ll put that question on my list for someday when I see him, right behind questioning him about war and famine …. Why, oh why, must we have fingers?
**If you think I’m going to admit fault in this situation, you’re crazy. My nickname in high school might have been “Klutz”, but my genetics and DNA will NOT be taking the blame for HER lack of coordination. I’m blaming chemo, and nothing you say can change my mind!
PS. Thanks to all of you who ate at your local Chili’s for lunch or dinner yesterday. The kids and I met friends there for dinner and had a really nice time. And I would like to publicly say THANK YOU to the anonymous person who bought our dinner for us. {I think it was you, kind lady in the lavender scrubs who recognized Kendrie and came to the table and said hello, although the waiter wouldn’t tell us, so I can’t be sure!} You probably didn’t know this, but the other little girl at our table (Haley from middle Georgia) was a fellow cancer patient as well, recovered several years from treatment for Wilms Tumor ….. so your picking up the tab was a kindness to both of our cancer families, and we really appreciated it!! I know St. Judes did, too! But I still would have liked to say thank you in person!
PSS. Don’t forget that Thursday is a fundraiser day for the Make-A-Wish Organization at Cold Stone Creamery ..... eating ice cream is a sacrifice that I guess I’ll just *have* to make …. for the good of the children .... (sigh)
Monday, September 25, 2006
MANIC MONDAY
My kids love school; they really, truly, do. They just don’t like getting out of bed in the morning. Especially Monday morning. No matter how much rest they’ve gotten over the weekend, how much relaxation and fun we’ve had, they’re never ready for Monday morning. They let me know this in various ways, such as moaning when I wake them up, rolling over and burying their faces under the covers.
Kellen and Brayden normally only need one reminder that it’s time to get up and start getting ready for school …. Kendrie usually makes it as far as the sofa before collapsing with fatigue, and would stay on the sofa, huddled in a blanket, complaining that “I'm cold!” or “It’s too early!” or “I’m still tired!” all day if I’d let her.
Once they get to school they’re ok, although Kendrie and I did have the following conversation this morning as I walked her to her classroom:
Kendrie: “I don’t want to go to school!”
Kristie: “You’re just grumpy because it’s Monday. You should go to bed earlier on Sunday night.”
Kendrie: “No, I really don’t want to go to school!”
Kristie: “Why not? You love school.”
Kendrie: “Yes, but it takes too long! It takes up my whole day!”
Kristie: “Well, just be glad you don’t go to school in China or Japan or any of those places. Those kids have to go to school from 8 in the morning until 5 at night, like a real job. They stay MUCH longer at school than you do.” {I have no idea if this is true, but I heard it somewhere and at this point, I’m looking for anything to make this kid quit whining.}
Kendrie (in her most “well DUH, Mom!” voice): “Well, yeah, but they’re studying cool stuff -- They’re all learning how to be ninjas!”
So there you have it. The REAL reason that Mitsubishi and Sanyo and Fujifilm are such successful international companies: The ninja training of their CEO’s. Bet those guys don’t bitch about Mondays, what with all the cool ninja fighting they get to do.
Kellen and Brayden normally only need one reminder that it’s time to get up and start getting ready for school …. Kendrie usually makes it as far as the sofa before collapsing with fatigue, and would stay on the sofa, huddled in a blanket, complaining that “I'm cold!” or “It’s too early!” or “I’m still tired!” all day if I’d let her.
Once they get to school they’re ok, although Kendrie and I did have the following conversation this morning as I walked her to her classroom:
Kendrie: “I don’t want to go to school!”
Kristie: “You’re just grumpy because it’s Monday. You should go to bed earlier on Sunday night.”
Kendrie: “No, I really don’t want to go to school!”
Kristie: “Why not? You love school.”
Kendrie: “Yes, but it takes too long! It takes up my whole day!”
Kristie: “Well, just be glad you don’t go to school in China or Japan or any of those places. Those kids have to go to school from 8 in the morning until 5 at night, like a real job. They stay MUCH longer at school than you do.” {I have no idea if this is true, but I heard it somewhere and at this point, I’m looking for anything to make this kid quit whining.}
Kendrie (in her most “well DUH, Mom!” voice): “Well, yeah, but they’re studying cool stuff -- They’re all learning how to be ninjas!”
So there you have it. The REAL reason that Mitsubishi and Sanyo and Fujifilm are such successful international companies: The ninja training of their CEO’s. Bet those guys don’t bitch about Mondays, what with all the cool ninja fighting they get to do.
Saturday, September 23, 2006
WHY EAVESDROPPING NEVER PAYS OFF
So, this gym where I’ve started working out (I figure if I keep mentioning it in this journal, then I’m more likely to continue going, what with the public accountability and all, right?) is primarily a physical therapy/rehab place. Lots of older people, recovering from accidents and illness and surgeries and what not. But they also have a “wellness” program for people who are interested in getting healthier, which is what I’m doing. I had to meet with a personal trainer-type person to discuss my overall goals the first day, and then he designed a workout plan for me. For some reason, he laughed when I said “Abs and Buns of Steel” as my primary goal, so we downgraded to “better overall health and fitness”. Hmmm. Imagine that.
It’s been interesting to me this first week to go in and see some of the other people, and play the guessing game in my head about what’s wrong with them, or if they’re there for “wellness” like I am. The guy riding the reclining bike with both legs in casts? I’m guessing car accident. Stroke victims are obvious. Etc. But I like this place for that very reason --- it’s not a bunch of PYT’s in spandex making me feel bad about myself. Granted, the 80 year olds who can out-lift me and out-walk me on the treadmill, yeah, *that* makes me feel bad about myself, ha! But overall I’m very comfortable there.
I do my warm up on an elliptical, and for the record, I am the most uncoordinated person on the planet and when I fall off and break my neck, don’t be surprised. Yesterday, there was a very fit, good looking guy on the elliptical next to me. He got off and started a circuit on the machines, lifting quite a bit of weight without any apparent problems, so I thought, “Aha! Another wellness person like me.” He was working out in a t-shirt and scrub pants that had happy faces all over them. An older lady with a very LOUD VOICE on the machine next to him struck up a conversation with him, and to take my mind off my flailing limbs on the elliptical, I was eavesdropping:
Older Lady: “I like those pants you have on. Where did you get them?”
Good Looking Guy: “You can buy them at {name of local medical supply store} but I got them when I was a patient at the Burn Center.”
OL: “Oh? You were burned?”
GLG: “Yep, over 50 percent of my body”
OL: “You look really good, I can’t see any scars”
GLG: “Lots of the burns were internal”
OL: “My house burned down last January but we weren’t home. Praise Jesus for you firefighters and the wonderful work you do.”
GLG: “Oh, I wasn’t a fire-fighter”
OL: “Oh, did your own house burn down?”
GLG: “Um, yes. Sort of”
OL: “Were you sleeping? What happened?”
GLG: “Actually, I was making meth.”
She never missed a beat.
OL: “Well that fire and you getting burned was a wake up call from the Lord!”
GLG: “Yes, ma’am, it sure was”
And then, I’m still not quite sure how, she went from praising Jesus to bashing President Bush and praising President Chavez in about 60 seconds, never taking a breath, with no end in sight. GLG was like a deer in the headlights, unable to escape, and all I could think was, “Yes. This is why I must get my iPod working immediately so I can NEVER eavesdrop again.”
And with that, on to Part 2 of this journal entry: the play-list. I want half of my play-list to be upbeat music, probably dance remixes and high energy songs that will be good for working out. I want the other half to be power ballads …. You know, the kind of song that you belt out while singing along to the radio in your car, quite confident that Celine Dion has NOTHING on you, baby!
Perfect example is Bonnie Tyler’s Total Eclipse of the Heart, which if I could give you just one more peek into last week’s karaoke debacle, was sung by me, NOT as a karaoke song, but by someone else, and I “helped” with the singing from the table, using a beer bottle as a microphone, which is made funnier by the fact that not only do I not drink beer, so it wasn’t MY bottle, but the bottle was given to me by the table next to me, two couples who were obviously in awe of my awesome vocal singing ability and encouraging me in my awesomeness by giving me their bottle to sing into.
No, I don’t drink much. Why do you ask?
So, I’m asking all of you for your song ideas in those two categories: “Good Upbeat Exercise Music”, and “Songs That Everyone Is Guilty of Singing In The Mirror Using a Hairbrush {or, beer bottle} For a Microphone”.
Any suggestions?
It’s been interesting to me this first week to go in and see some of the other people, and play the guessing game in my head about what’s wrong with them, or if they’re there for “wellness” like I am. The guy riding the reclining bike with both legs in casts? I’m guessing car accident. Stroke victims are obvious. Etc. But I like this place for that very reason --- it’s not a bunch of PYT’s in spandex making me feel bad about myself. Granted, the 80 year olds who can out-lift me and out-walk me on the treadmill, yeah, *that* makes me feel bad about myself, ha! But overall I’m very comfortable there.
I do my warm up on an elliptical, and for the record, I am the most uncoordinated person on the planet and when I fall off and break my neck, don’t be surprised. Yesterday, there was a very fit, good looking guy on the elliptical next to me. He got off and started a circuit on the machines, lifting quite a bit of weight without any apparent problems, so I thought, “Aha! Another wellness person like me.” He was working out in a t-shirt and scrub pants that had happy faces all over them. An older lady with a very LOUD VOICE on the machine next to him struck up a conversation with him, and to take my mind off my flailing limbs on the elliptical, I was eavesdropping:
Older Lady: “I like those pants you have on. Where did you get them?”
Good Looking Guy: “You can buy them at {name of local medical supply store} but I got them when I was a patient at the Burn Center.”
OL: “Oh? You were burned?”
GLG: “Yep, over 50 percent of my body”
OL: “You look really good, I can’t see any scars”
GLG: “Lots of the burns were internal”
OL: “My house burned down last January but we weren’t home. Praise Jesus for you firefighters and the wonderful work you do.”
GLG: “Oh, I wasn’t a fire-fighter”
OL: “Oh, did your own house burn down?”
GLG: “Um, yes. Sort of”
OL: “Were you sleeping? What happened?”
GLG: “Actually, I was making meth.”
She never missed a beat.
OL: “Well that fire and you getting burned was a wake up call from the Lord!”
GLG: “Yes, ma’am, it sure was”
And then, I’m still not quite sure how, she went from praising Jesus to bashing President Bush and praising President Chavez in about 60 seconds, never taking a breath, with no end in sight. GLG was like a deer in the headlights, unable to escape, and all I could think was, “Yes. This is why I must get my iPod working immediately so I can NEVER eavesdrop again.”
And with that, on to Part 2 of this journal entry: the play-list. I want half of my play-list to be upbeat music, probably dance remixes and high energy songs that will be good for working out. I want the other half to be power ballads …. You know, the kind of song that you belt out while singing along to the radio in your car, quite confident that Celine Dion has NOTHING on you, baby!
Perfect example is Bonnie Tyler’s Total Eclipse of the Heart, which if I could give you just one more peek into last week’s karaoke debacle, was sung by me, NOT as a karaoke song, but by someone else, and I “helped” with the singing from the table, using a beer bottle as a microphone, which is made funnier by the fact that not only do I not drink beer, so it wasn’t MY bottle, but the bottle was given to me by the table next to me, two couples who were obviously in awe of my awesome vocal singing ability and encouraging me in my awesomeness by giving me their bottle to sing into.
No, I don’t drink much. Why do you ask?
So, I’m asking all of you for your song ideas in those two categories: “Good Upbeat Exercise Music”, and “Songs That Everyone Is Guilty of Singing In The Mirror Using a Hairbrush {or, beer bottle} For a Microphone”.
Any suggestions?
Thursday, September 21, 2006
"STAY AT HOME”, MY ASS. AND A LAZY ASS IT IS, APPARENTLY.
Today, in review:
6am: Alarm goes off, take shower, get dressed.
7am: Wake kids. Make breakfasts, help with clothes, help with hair, prepare snacks and lunches for school, continue helping with clothes and hair brushing because God forbid anyone do anything for themselves around here.
8 am: Drive kids to school, visit Book Fair with smallest child since allowance is burning a Junie B. Jones-sized hole in her pocket. Agree to help teacher with spelling project.
8:30 am: Return home. Start a load of laundry, fold a clean load of laundry. Clean bathroom, pick up living room. Put away remainder of fall decorations, pay bills.
10 am: Leave house. Make third visit in one week to newly opened Hobby Lobby store to begin shopping for Christmas presents (yes, I am that anal and begin shopping this far in advance.) Visit wellness center for first work out session complete with strength training and cardio (note to self: NO NEED to tell the internet about the geriatric who totally kicked my ass on the treadmills.) Stop by grocery store and pick up all the items our family simply cannot live without yet manage to run out of every three days: dog food, paper towels, and bananas; items which somehow manage to make mad passionate grocery-love and multiply into $94.00 worth of stuff in my cart. Make side trip to bank to wire money to title company in Oklahoma who just informed us today that they cannot accept personal checks, which is what I sent to close on a home Blaine and I are purchasing, and oh by the way we have until the close of business today to get them the money or the contract we spent an hour getting notarized and signed earlier this week will be null and void. Make quick trip to Sonic because all this running around is making me thirsty, naturally, and I can always justify my daily DDP.
1pm: Arrive back home, unload groceries and Christmas presents, put away. Fold another load of laundry. Eat dinner leftovers for lunch. Return two phone calls; pack small cooler with snacks and bottled water for kids.
2:30 pm: Leave to pick kids up from school. Make two more phone calls while waiting for them to be dismissed.
3:15 pm: Take Brayden to ceramics class across town. While driving, dispense drinks and snacks in car. During her class, while she is doing whatever it is creative types do, help Kellen and Kendrie with homework.
4:30 pm: Drive all three kids back across town for baseball practice (Kellen) and soccer practice (Kendrie) stopping for quick dinner on the way.
5:15 pm: Do the “kid-swap” with Blaine, so he can take Kellen to his practice and I can take Kendrie to hers.
6 pm: Sit through hour and a half soccer practice, working on sorting/flashcard/spelling project for Kellen’s teacher the entire time.
7:45 pm: Drive Brayden and Kendrie home from soccer practice, stopping at Burger King because Brayden has to use the restroom and swears she simply CANNOT make it home first.
8 pm: See teacher from their elementary school pull up in parking lot. Listen to numerous pleas and whining to go over and say hello to teacher. Wait a moment, notice teacher is not getting out of car. Tell children NO, that you are tired and you just want to go home.
8:03 pm: Overhear, with your little ear, your youngest child say in a petulant voice: “Yeah you’re tired, because you’re lazy and you don’t ever do anything.”
8:05 pm: Wonder how much reconstructive work I will need, after the way my head swiveled around and my eyes bugged out and the top of my head exploded like Mt. St. Helens.
6am: Alarm goes off, take shower, get dressed.
7am: Wake kids. Make breakfasts, help with clothes, help with hair, prepare snacks and lunches for school, continue helping with clothes and hair brushing because God forbid anyone do anything for themselves around here.
8 am: Drive kids to school, visit Book Fair with smallest child since allowance is burning a Junie B. Jones-sized hole in her pocket. Agree to help teacher with spelling project.
8:30 am: Return home. Start a load of laundry, fold a clean load of laundry. Clean bathroom, pick up living room. Put away remainder of fall decorations, pay bills.
10 am: Leave house. Make third visit in one week to newly opened Hobby Lobby store to begin shopping for Christmas presents (yes, I am that anal and begin shopping this far in advance.) Visit wellness center for first work out session complete with strength training and cardio (note to self: NO NEED to tell the internet about the geriatric who totally kicked my ass on the treadmills.) Stop by grocery store and pick up all the items our family simply cannot live without yet manage to run out of every three days: dog food, paper towels, and bananas; items which somehow manage to make mad passionate grocery-love and multiply into $94.00 worth of stuff in my cart. Make side trip to bank to wire money to title company in Oklahoma who just informed us today that they cannot accept personal checks, which is what I sent to close on a home Blaine and I are purchasing, and oh by the way we have until the close of business today to get them the money or the contract we spent an hour getting notarized and signed earlier this week will be null and void. Make quick trip to Sonic because all this running around is making me thirsty, naturally, and I can always justify my daily DDP.
1pm: Arrive back home, unload groceries and Christmas presents, put away. Fold another load of laundry. Eat dinner leftovers for lunch. Return two phone calls; pack small cooler with snacks and bottled water for kids.
2:30 pm: Leave to pick kids up from school. Make two more phone calls while waiting for them to be dismissed.
3:15 pm: Take Brayden to ceramics class across town. While driving, dispense drinks and snacks in car. During her class, while she is doing whatever it is creative types do, help Kellen and Kendrie with homework.
4:30 pm: Drive all three kids back across town for baseball practice (Kellen) and soccer practice (Kendrie) stopping for quick dinner on the way.
5:15 pm: Do the “kid-swap” with Blaine, so he can take Kellen to his practice and I can take Kendrie to hers.
6 pm: Sit through hour and a half soccer practice, working on sorting/flashcard/spelling project for Kellen’s teacher the entire time.
7:45 pm: Drive Brayden and Kendrie home from soccer practice, stopping at Burger King because Brayden has to use the restroom and swears she simply CANNOT make it home first.
8 pm: See teacher from their elementary school pull up in parking lot. Listen to numerous pleas and whining to go over and say hello to teacher. Wait a moment, notice teacher is not getting out of car. Tell children NO, that you are tired and you just want to go home.
8:03 pm: Overhear, with your little ear, your youngest child say in a petulant voice: “Yeah you’re tired, because you’re lazy and you don’t ever do anything.”
8:05 pm: Wonder how much reconstructive work I will need, after the way my head swiveled around and my eyes bugged out and the top of my head exploded like Mt. St. Helens.
Wednesday, September 20, 2006
OUTSIDE MY COMFORT ZONE
Sorry for the delay in updates; my mom has been here visiting and she and I have been very busy eating, running errands, eating, shopping, eating ... did I mention eating? My computer time was cut a bit short since it's difficult to type when you are double-fisting gingerbread man cookies .....
Anyway, on with the update:
Various and assorted ways in which I have stepped out of my comfort zone this past week, none of which will change the world, but might hopefully expand my tiny little corner of it:
1) At the suggestion of Heidi S in the guestbook, and because September is Childhood Cancer Awareness Month, I tweaked the previous journal entry, about Kendrie playing in her first soccer game, and submitted it to our local newspaper. It would be great if they would run an article (or two or three dozen) about families walking this path through the world of pediatric cancer, and bring attention to childhood cancer and survivorship issues. It made me feel a little presumptuous to send an unsolicited article to the attention of the editor, but I’d certainly be willing to promote the cause of awareness here in middle Georgia, even if things like that make me nervous. Of course, it’s been 48 hours and I haven’t received a response, but at least I know I tried. Perhaps I should send another e-mail, or even make a follow-up call ….. Mayday! Mayday! Leaning Waaayyy outside the comfort zone!
2) Also outside my comfort zone with regards to cancer, I have agreed to consider serving as a breakout speaker for a local cancer coalition conference. Not as a “cancer mom”, but as a “cancer spouse”. I have to get more details, and notice I haven’t **technically** said I would agree to speak --- I said I would agree to CONSIDER speaking. Huge difference!!! But since any form of public speaking more pronounced than placing my order into the clown’s mouth at McDonalds gives me hives, even agreeing to think about it was pretty daring for me.
3) Pimping for Chili’s. Actually, this isn’t outside my comfort zone, because promoting worthwhile causes is easy to do:
“Chili's to donate all profits from Sept. 25 to St. Jude
You can make a meal count on September 25 by dining at your local Chili's Grill & Bar. On that day, Chili's will donate 100 percent of profits to St. Jude Children's Research Hospital.
This special day is part of Chili's "Create A Pepper to Fight Childhood Cancer" campaign occurring throughout September, which is also National Childhood Cancer Awareness Month. During the entire month, Chili's is asking its guests to donate $1 or more for the opportunity to color a pinup of Chili's signature pepper; pinups will be displayed in restaurants for the duration of the campaign.
In addition, supporters can visit Create A Pepper to purchase Create A Pepper T-shirts that can be customized with permanent marker to fit their individual style.
Also new this year are Create A Pepper Gift Cards, which offer a means of giving to those you love while giving back. Chili’s will donate $1 to St. Jude for every $25 purchased in Create A Pepper Gift Cards, which can be customized with permanent marker or crayon.
The funds raised help ensure that the life-saving research and care provided by St. Jude can continue. For more than 40 years, St. Jude has been dedicated to finding cures and saving children with cancer ad other childhood catastrophic diseases. Its research breakthroughs have helped push overall childhood cancer survival rates from less than 20 percent in 1962 to more than 70 percent today. No family ever pays for treatments not covered by insurance, and families without insurance are never asked to pay.
So get your co-workers or your family together on September 25 for lunch or dinner at a Chili's near you. The meal you share can give kids with cancer a fighting chance.”
We’ll be eating dinner at the Chili’s in Macon that evening, and would love for any local families to join us (Denise? What do you say?) Last year’s dinner is a bittersweet memory for me. We ate with Haley and her parents and talked and visited like any normal people would. We watched our kids, sitting and playing in another booth (because all parents look forward to the day when their kids are old enough to eat OVER THERE in their own booth!) Then, Haley passed away shortly after, on the list for a liver transplant. How is that possible? We had just had dinner with them and were stunned to hear the news. Cheryl, we are thinking about your family as the anniversary of Haley’s death is coming up and send lots of comforting thoughts your way.
4) I joined a gym. Well, not really a gym, but a wellness center at a physical therapy/rehab place. Which is actually pretty funny, when you consider that the vast majority of the people exercising there are either in their 70’s, or recovering from car accidents or back or knee surgery. Neck braces, ankle braces, canes ... etc. The only magazine I saw in the waiting room was a monthly issue of AARP and I was feeling smug about how much better shape I will be in than any of those people, until I noticed the gray-haired grandma in the knee splint was bench pressing twice the amount I was. Not so cocky now, am I???
5) The final and most profound way I stepped out of my comfort zone this past week involved a karaoke machine and a bottomless pitcher of Amaretto and honestly? Should probably not be shared with the internet.
PS. Ya'll!!!! We're closing in on a cool one million in the Caringbridge guestbook; how awesome is that??? Unless you consider the amount of times my mom visits the site, and the embarrassingly large number of typos and grammatical errors I have to go back and correct. Then, not so impressive. But if you find yourself as the one-millionth hit, let me know! The only rule is: NO REFRESHING just to get it! :)
Anyway, on with the update:
Various and assorted ways in which I have stepped out of my comfort zone this past week, none of which will change the world, but might hopefully expand my tiny little corner of it:
1) At the suggestion of Heidi S in the guestbook, and because September is Childhood Cancer Awareness Month, I tweaked the previous journal entry, about Kendrie playing in her first soccer game, and submitted it to our local newspaper. It would be great if they would run an article (or two or three dozen) about families walking this path through the world of pediatric cancer, and bring attention to childhood cancer and survivorship issues. It made me feel a little presumptuous to send an unsolicited article to the attention of the editor, but I’d certainly be willing to promote the cause of awareness here in middle Georgia, even if things like that make me nervous. Of course, it’s been 48 hours and I haven’t received a response, but at least I know I tried. Perhaps I should send another e-mail, or even make a follow-up call ….. Mayday! Mayday! Leaning Waaayyy outside the comfort zone!
2) Also outside my comfort zone with regards to cancer, I have agreed to consider serving as a breakout speaker for a local cancer coalition conference. Not as a “cancer mom”, but as a “cancer spouse”. I have to get more details, and notice I haven’t **technically** said I would agree to speak --- I said I would agree to CONSIDER speaking. Huge difference!!! But since any form of public speaking more pronounced than placing my order into the clown’s mouth at McDonalds gives me hives, even agreeing to think about it was pretty daring for me.
3) Pimping for Chili’s. Actually, this isn’t outside my comfort zone, because promoting worthwhile causes is easy to do:
“Chili's to donate all profits from Sept. 25 to St. Jude
You can make a meal count on September 25 by dining at your local Chili's Grill & Bar. On that day, Chili's will donate 100 percent of profits to St. Jude Children's Research Hospital.
This special day is part of Chili's "Create A Pepper to Fight Childhood Cancer" campaign occurring throughout September, which is also National Childhood Cancer Awareness Month. During the entire month, Chili's is asking its guests to donate $1 or more for the opportunity to color a pinup of Chili's signature pepper; pinups will be displayed in restaurants for the duration of the campaign.
In addition, supporters can visit Create A Pepper to purchase Create A Pepper T-shirts that can be customized with permanent marker to fit their individual style.
Also new this year are Create A Pepper Gift Cards, which offer a means of giving to those you love while giving back. Chili’s will donate $1 to St. Jude for every $25 purchased in Create A Pepper Gift Cards, which can be customized with permanent marker or crayon.
The funds raised help ensure that the life-saving research and care provided by St. Jude can continue. For more than 40 years, St. Jude has been dedicated to finding cures and saving children with cancer ad other childhood catastrophic diseases. Its research breakthroughs have helped push overall childhood cancer survival rates from less than 20 percent in 1962 to more than 70 percent today. No family ever pays for treatments not covered by insurance, and families without insurance are never asked to pay.
So get your co-workers or your family together on September 25 for lunch or dinner at a Chili's near you. The meal you share can give kids with cancer a fighting chance.”
We’ll be eating dinner at the Chili’s in Macon that evening, and would love for any local families to join us (Denise? What do you say?) Last year’s dinner is a bittersweet memory for me. We ate with Haley and her parents and talked and visited like any normal people would. We watched our kids, sitting and playing in another booth (because all parents look forward to the day when their kids are old enough to eat OVER THERE in their own booth!) Then, Haley passed away shortly after, on the list for a liver transplant. How is that possible? We had just had dinner with them and were stunned to hear the news. Cheryl, we are thinking about your family as the anniversary of Haley’s death is coming up and send lots of comforting thoughts your way.
4) I joined a gym. Well, not really a gym, but a wellness center at a physical therapy/rehab place. Which is actually pretty funny, when you consider that the vast majority of the people exercising there are either in their 70’s, or recovering from car accidents or back or knee surgery. Neck braces, ankle braces, canes ... etc. The only magazine I saw in the waiting room was a monthly issue of AARP and I was feeling smug about how much better shape I will be in than any of those people, until I noticed the gray-haired grandma in the knee splint was bench pressing twice the amount I was. Not so cocky now, am I???
5) The final and most profound way I stepped out of my comfort zone this past week involved a karaoke machine and a bottomless pitcher of Amaretto and honestly? Should probably not be shared with the internet.
PS. Ya'll!!!! We're closing in on a cool one million in the Caringbridge guestbook; how awesome is that??? Unless you consider the amount of times my mom visits the site, and the embarrassingly large number of typos and grammatical errors I have to go back and correct. Then, not so impressive. But if you find yourself as the one-millionth hit, let me know! The only rule is: NO REFRESHING just to get it! :)
Sunday, September 17, 2006
FULL CIRCLE
Three years ago, in the fall of 2003, Brayden was playing her first season of fall soccer. She was so cute, only six years old, and Blaine and I loved going to her games. She was never very aggressive (or even very talented!) but she had fun running around, getting a little fresh air and exercise, and most importantly, getting a juice box and a snack at the end of the game, and really, what else do you need in life?
Also in the fall of 2003, Kendrie started complaining that her arms and legs hurt. I remember thinking she was being lazy, or manipulative. I remember getting frustrated at her requests to be carried everywhere, or crying in her car seat that her legs were continuously falling asleep. I remember wishing that the virus her pediatrician had diagnosed her with would hurry up and run its course already so she’d quit whining. I remember saying to her, “There is nothing wrong with your legs! You are four years old now and you are too big and heavy for me to carry you all the time!” (insert big, exasperated sigh)
I clearly remember, in the fall of 2003, taking her to one of Brayden’s soccer games and her asking to be carried from the car to the field. Blaine and Kellen didn’t go with us that day, and I remember being annoyed because I had to carry the chairs and the water bottles and my keys and my camera, also, and schlepping her from the parking lot to the playing field was the LAST thing I wanted to do! I remember there was a huge dirt mound from a construction project next to the field, where Kellen and Kendrie always wanted to play during the games. Being ages just-turned-four and five, they didn’t have the attention span to patiently sit through a one-hour game. I didn't care if they got dirty, but if Brayden was playing soccer over *here* and the two of them were playing King of the Hill over *there* I couldn’t concentrate on and enjoy the game as much.
That particular Saturday, Kendrie never got out of her chair. In fact, she fell asleep at the game. I remember feeling partly grateful, because if she was napping, it would be a whole lot easier for me to enjoy Brayden's game. I remember feeling a little ashamed of my selfishness; that I was *glad* she was tired enough for a nap. And I remember thinking it was odd she would take a nap anyway … she quit napping at 18 months. But hey, I had an adorable 1st grader playing soccer and lots of picture-taking to be done, so why look a gift horse in the mouth?
All parents of kids with cancer look back after the fact to the days and weeks before diagnosis, when the warning signs, that seemed so random at the time, come into focus and we have an “AHA!” moment where it all suddenly makes sense. We wonder if we could have done anything to prevent it (NO); if anything we did or didn’t do caused it (NO AT LEAST I DON’T THINK SO); if we should have somehow realized what was happening more quickly, or if knowing would have changed anything (AGAIN, NO); and we berate ourselves for not immediately seeing what was unfolding before our eyes (HEY AT SOME POINT YOU’VE GOT TO CUT YOURSELF SOME SLACK).
That day, my warning sign that something was wrong was a normally exuberant four-year old, who would rather sleep in a chair at her older sister’s soccer game than play in the dirt and pester me for grape soda and hot dogs. I put an umbrella over her so her face wouldn’t get sunburned and turned my attention back to the game. But the image of her in that chair, curled up and sleeping, with my red umbrella opened up over her, will stay burned in my mind forever. I no longer feel guilty because I didn’t see it for what it was --- a little girl whose bone marrow was filling with leukemia cells and whose normal cell production had slowed so drastically she would be critically anemic within a few days. I don’t beat myself up about it anymore, but I won’t forget it.
Yesterday, my mental storage cache had to make room for NEW images, images which make me much happier, and which fill me with joy and happiness and pride, instead of guilt and stress. Yesterday, instead of being the sick little girl asleep in the chair, Kendrie was the kid ON THE FIELD!! Playing on the same field, in the same league, in the same uniform. *SHE* got the juice box and snack at the end of the game ….. and yes, the other two still preferred wandering off to play in the dirt. But as I watched her run around (ps. running in the grass, laughing with her team-mates, enjoying the fresh air and exercise ---- coughing and hacking up A LUNG!!! … we are SO off to the pediatrician this week to see if she has allergies!) I couldn’t help but think about the fact she has come full circle. She is healthy; happy; strong.
And my fervent prayer is that she is never the kid, sleeping in the chair with an umbrella over her face again.
Because check out the difference three years makes --- Kendrie during induction, puffy, aching, fatigued, bloated from steroids, ravenous:
And check out the svelte Kendrie of today:
Because I have no idea if the waves will stay, and suspect they will be gone with the first hair cut, but I plan to enjoy them as long as I can:
And because sometimes, despite two and a half years of chemo, you run so fast you are a blur, and even *those* photos are beautiful to your mother:
Also in the fall of 2003, Kendrie started complaining that her arms and legs hurt. I remember thinking she was being lazy, or manipulative. I remember getting frustrated at her requests to be carried everywhere, or crying in her car seat that her legs were continuously falling asleep. I remember wishing that the virus her pediatrician had diagnosed her with would hurry up and run its course already so she’d quit whining. I remember saying to her, “There is nothing wrong with your legs! You are four years old now and you are too big and heavy for me to carry you all the time!” (insert big, exasperated sigh)
I clearly remember, in the fall of 2003, taking her to one of Brayden’s soccer games and her asking to be carried from the car to the field. Blaine and Kellen didn’t go with us that day, and I remember being annoyed because I had to carry the chairs and the water bottles and my keys and my camera, also, and schlepping her from the parking lot to the playing field was the LAST thing I wanted to do! I remember there was a huge dirt mound from a construction project next to the field, where Kellen and Kendrie always wanted to play during the games. Being ages just-turned-four and five, they didn’t have the attention span to patiently sit through a one-hour game. I didn't care if they got dirty, but if Brayden was playing soccer over *here* and the two of them were playing King of the Hill over *there* I couldn’t concentrate on and enjoy the game as much.
That particular Saturday, Kendrie never got out of her chair. In fact, she fell asleep at the game. I remember feeling partly grateful, because if she was napping, it would be a whole lot easier for me to enjoy Brayden's game. I remember feeling a little ashamed of my selfishness; that I was *glad* she was tired enough for a nap. And I remember thinking it was odd she would take a nap anyway … she quit napping at 18 months. But hey, I had an adorable 1st grader playing soccer and lots of picture-taking to be done, so why look a gift horse in the mouth?
All parents of kids with cancer look back after the fact to the days and weeks before diagnosis, when the warning signs, that seemed so random at the time, come into focus and we have an “AHA!” moment where it all suddenly makes sense. We wonder if we could have done anything to prevent it (NO); if anything we did or didn’t do caused it (NO AT LEAST I DON’T THINK SO); if we should have somehow realized what was happening more quickly, or if knowing would have changed anything (AGAIN, NO); and we berate ourselves for not immediately seeing what was unfolding before our eyes (HEY AT SOME POINT YOU’VE GOT TO CUT YOURSELF SOME SLACK).
That day, my warning sign that something was wrong was a normally exuberant four-year old, who would rather sleep in a chair at her older sister’s soccer game than play in the dirt and pester me for grape soda and hot dogs. I put an umbrella over her so her face wouldn’t get sunburned and turned my attention back to the game. But the image of her in that chair, curled up and sleeping, with my red umbrella opened up over her, will stay burned in my mind forever. I no longer feel guilty because I didn’t see it for what it was --- a little girl whose bone marrow was filling with leukemia cells and whose normal cell production had slowed so drastically she would be critically anemic within a few days. I don’t beat myself up about it anymore, but I won’t forget it.
Yesterday, my mental storage cache had to make room for NEW images, images which make me much happier, and which fill me with joy and happiness and pride, instead of guilt and stress. Yesterday, instead of being the sick little girl asleep in the chair, Kendrie was the kid ON THE FIELD!! Playing on the same field, in the same league, in the same uniform. *SHE* got the juice box and snack at the end of the game ….. and yes, the other two still preferred wandering off to play in the dirt. But as I watched her run around (ps. running in the grass, laughing with her team-mates, enjoying the fresh air and exercise ---- coughing and hacking up A LUNG!!! … we are SO off to the pediatrician this week to see if she has allergies!) I couldn’t help but think about the fact she has come full circle. She is healthy; happy; strong.
And my fervent prayer is that she is never the kid, sleeping in the chair with an umbrella over her face again.
Because check out the difference three years makes --- Kendrie during induction, puffy, aching, fatigued, bloated from steroids, ravenous:
And check out the svelte Kendrie of today:
Because I have no idea if the waves will stay, and suspect they will be gone with the first hair cut, but I plan to enjoy them as long as I can:
And because sometimes, despite two and a half years of chemo, you run so fast you are a blur, and even *those* photos are beautiful to your mother:
Friday, September 15, 2006
HAPPY GIRL ON A FLASHBACK FRIDAY
To the millions and millions of people … ok, thousands of people ….. well, maybe hundreds ….. OK to the HALF DOZEN people who have commented that Kendrie looks just like her dad, I offer the following photographic proof that she is indeed the fruit of my loins (in case my twelve hours of labor wasn't proof enough):
Kristie and Kendrie. Both photos taken at age 3. Hmmmm, notice I am eating cake? Not much has changed in the past 37 years. Notice also the complete incongruity of my mother's faith in me and my eating skills: I am eating my birthday cake off a crystal serving plate, but forced to sit on cartoons from the newspaper so I won't spill cake crumbs all over the carpet.
Who do I think she looks like now? I don’t know for sure, but I **DO** know she is one happy girl. So take THAT, big fat poopy head cancer.
PS. Amy in the guestbook: No, I'm not six feet tall, although I wish I were so my height would (then) be appropriate for my weight, unlike the disproportionate mess I am now. The tiny pixie-fairy standing next to me is Nicholas's mom, Susan ... my short neighbor and friend ... and possible potential mother-in-law! Er, wait ... she would be *Kendrie's* MIL ... what the heck would she be to me???
Tracy in the guestbook: Thanks for the nice comment, but the sign hid the bulk of my ass and thighs. Too bad "Eating" isn't an Olympic sport ... that gold medal would have my name written all over it.
Kristie and Kendrie. Both photos taken at age 3. Hmmmm, notice I am eating cake? Not much has changed in the past 37 years. Notice also the complete incongruity of my mother's faith in me and my eating skills: I am eating my birthday cake off a crystal serving plate, but forced to sit on cartoons from the newspaper so I won't spill cake crumbs all over the carpet.
Who do I think she looks like now? I don’t know for sure, but I **DO** know she is one happy girl. So take THAT, big fat poopy head cancer.
PS. Amy in the guestbook: No, I'm not six feet tall, although I wish I were so my height would (then) be appropriate for my weight, unlike the disproportionate mess I am now. The tiny pixie-fairy standing next to me is Nicholas's mom, Susan ... my short neighbor and friend ... and possible potential mother-in-law! Er, wait ... she would be *Kendrie's* MIL ... what the heck would she be to me???
Tracy in the guestbook: Thanks for the nice comment, but the sign hid the bulk of my ass and thighs. Too bad "Eating" isn't an Olympic sport ... that gold medal would have my name written all over it.
Thursday, September 14, 2006
LOVE IS ….
Thanks very much to so many of you who have taken the time to write in the guestbook the past few days with your well wishes and good thoughts for Blaine. He tried reading the notes on the hotel computer but wasn’t able to get through them all …. A pretty nice problem to have. :) He’ll read every one when he gets back home and I know he appreciates them as much as I do, so again, thanks.
I *did* send him, just for the record, with a list of questions for the oncologist. Unfortunately, they were all relevant for either scenario #1: “Yippee the cancer is gone now what do we do?” or scenario #2: “Oh dear its not gone now what do we do?”. Like Chandler’s mom Kim said, Blaine and I were both expecting a declaration of NED “No Evidence of Disease” and when they tossed out the word "dormant", I think it took him a bit by surprise as well. And then the doctor started talking in that Charlie Brown-Teacher voice, “Wah, wahh, wahh” and all the questions I had written down flew right out of his brain.
He is meeting with the oral surgeon today to discuss plans for reconstruction, which he is really excited about. Kind of like the way you get excited to have a huge boil lanced off your butt ---- you know it’s going to hurt like hell while you’re doing it, but in the long run, you and your tush will feel much better. While he’s at the clinic, he is going to ask for the oncologist’s e-mail address so I can write him with my laundry list of questions. You *knew* I couldn’t just let it go, right?
And that, officially, is two and a half journal entries dedicated to Blaine and his cancer. Plenty of time, I believe, in between journal entries about me, myself, and I. Because as anyone who follows this journal can tell you ---- IT’S. ALL. ABOUT. ME. My mother should have named me Mimi.
So, with that out of the way, let’s go back to the second half of my birthday entry, which I didn’t get to write about when it was happening.
When you turn 40, Love is:
Love is pretending to believe your wife when she tells you she could really, truly, HONESTLY start working out if only she had an iPod to listen to some jamming tunes while exercising.
Even more importantly, love is not pointing out the fact that the iPod is still sitting in it’s original packaging a week later, and your chubby wife hasn’t downloaded a single song or as much as walked to the mailbox. Luckily, Blaine is polite enough not to mention these things.
Love is having a great group of girlfriends who not only invite you to lunch on your birthday, but even pick up the tab and bring you really cool presents. Hmmm. Wonder if they'd believe me if I claimed to be turning 40 again next year?????
Love is having neighborhood friends who think it will be funny to position 40 pink flamingos on your front yard, along with a “Lordy, lordy” sign. Actually, I must confess, it *was* pretty funny. :)
Love is coming to visit from OKC and bringing two dozen delicious gingerbread men from your daughter’s favorite bakery …. Cookies that your daughter makes you bring every time you visit, because she loves them so, so, so, so, so, so much, even though thanks to the new airline travel restrictions about food and water on the plane it meant you had to totally check your luggage so you could get the stupid cookies to Atlanta and then fight the crowd at baggage claim all for two dozen stupid cookies.
But evidence of the biggest, most all-encompassing love of all:
Photographic proof that I shared the cookies with my children, and didn’t even complain when they left a bunch of crumbly arms and legs, and one half of one gingerbread head, in the bag. THAT, my friends, is love.
I *did* send him, just for the record, with a list of questions for the oncologist. Unfortunately, they were all relevant for either scenario #1: “Yippee the cancer is gone now what do we do?” or scenario #2: “Oh dear its not gone now what do we do?”. Like Chandler’s mom Kim said, Blaine and I were both expecting a declaration of NED “No Evidence of Disease” and when they tossed out the word "dormant", I think it took him a bit by surprise as well. And then the doctor started talking in that Charlie Brown-Teacher voice, “Wah, wahh, wahh” and all the questions I had written down flew right out of his brain.
He is meeting with the oral surgeon today to discuss plans for reconstruction, which he is really excited about. Kind of like the way you get excited to have a huge boil lanced off your butt ---- you know it’s going to hurt like hell while you’re doing it, but in the long run, you and your tush will feel much better. While he’s at the clinic, he is going to ask for the oncologist’s e-mail address so I can write him with my laundry list of questions. You *knew* I couldn’t just let it go, right?
And that, officially, is two and a half journal entries dedicated to Blaine and his cancer. Plenty of time, I believe, in between journal entries about me, myself, and I. Because as anyone who follows this journal can tell you ---- IT’S. ALL. ABOUT. ME. My mother should have named me Mimi.
So, with that out of the way, let’s go back to the second half of my birthday entry, which I didn’t get to write about when it was happening.
When you turn 40, Love is:
Love is pretending to believe your wife when she tells you she could really, truly, HONESTLY start working out if only she had an iPod to listen to some jamming tunes while exercising.
Even more importantly, love is not pointing out the fact that the iPod is still sitting in it’s original packaging a week later, and your chubby wife hasn’t downloaded a single song or as much as walked to the mailbox. Luckily, Blaine is polite enough not to mention these things.
Love is having a great group of girlfriends who not only invite you to lunch on your birthday, but even pick up the tab and bring you really cool presents. Hmmm. Wonder if they'd believe me if I claimed to be turning 40 again next year?????
Love is having neighborhood friends who think it will be funny to position 40 pink flamingos on your front yard, along with a “Lordy, lordy” sign. Actually, I must confess, it *was* pretty funny. :)
Love is coming to visit from OKC and bringing two dozen delicious gingerbread men from your daughter’s favorite bakery …. Cookies that your daughter makes you bring every time you visit, because she loves them so, so, so, so, so, so much, even though thanks to the new airline travel restrictions about food and water on the plane it meant you had to totally check your luggage so you could get the stupid cookies to Atlanta and then fight the crowd at baggage claim all for two dozen stupid cookies.
But evidence of the biggest, most all-encompassing love of all:
Photographic proof that I shared the cookies with my children, and didn’t even complain when they left a bunch of crumbly arms and legs, and one half of one gingerbread head, in the bag. THAT, my friends, is love.
Tuesday, September 12, 2006
AND THEN THERE WAS OPTION NUMBER 3.
Which I didn’t even realize was a possibility: No change.
I don’t know which is worse …. Bad news; no news; or confusing news. Well, yes, bad news would have been the worst and thankfully we didn’t get that. At least, I don’t think so. But I’m not really sure. All you tumor-veterans out there will have to explain this stupid process to me, so I can understand what today’s results mean. Because Lord knows my husband is incapable of asking the doctor the questions that **I** need him to ask. And since we were too cheap to pay for the airfare for me to go with him, after the Air Force turned down my request to accompany him on *their* dime …. I was unable to interrogate the doctor myself, so I needed for Blaine to understand my questions telepathically and relay them to the oncologist, which he failed to do. Nineteen years of marriage and the guy still can’t read my mind.
Apparently the day started off badly when they were unable to do the MRI with contrast like they wanted, because Blaine has the veins of a 7-yr old butterfly princess and no-one could get an IV going, even though “They poked me at least ten damn times and none of them worked!” So he only got one of the scans for which he was scheduled.
He had a meeting with the oncologist several hours later, and thanks to the time zone difference, it took me until after dinner tonight to get the results from him. But the oncologist had looked at the pictures, and that was his official, executive, authorized, I-went-to-medical-school diagnosis: No change.
What does that mean?????
This is the phone conversation we had. Verbatim. I swear, you will wonder how we’ve stayed married for so long.
Blaine: “So how was your day today?”
Kristie: “Knock off the chitchat and tell me what they said”
Blaine: “About the scans?” --- My hand to God, he said that. No, about the price of rice in China …. Yes you bonehead, about the scans.
Kristie: “Yes, about the scans”
Blaine: “The tumors are exactly like they were before, no change”
Kristie: “What do you mean no change? They’re supposed to be gone”
Blaine: “They’re not”
Kristie: “Well then they’re supposed to be smaller”
Blaine: “They’re not”
Kristie: “So the radiation didn’t work?”
Blaine: “I think it worked. The tumors haven’t grown.”
Kristie: “But what does that mean?”
Blaine: “It means they’re not any bigger.”
Kristie: “Yes, I’m aware of what the word ‘grown’ implies. So does that mean you still have cancer?”
Blaine: “I think it means the radiation made the cancer cells dormant”
Kristie: “So what does that mean?”
Blaine: “Dormant means it’s not growing”
Kristie: (really gritting my teeth about now) “Yes, I own a dictionary. I know the meaning of the word dormant. What does it mean with regards to your cancer? The tumors in YOUR head???”
Blaine: “I’m not sure”
Kristie: “So did the doctor say it will stay dormant?”
Blaine: “I don’t know”
Kristie: “Will it start growing again at some point?”
Blaine: “I hope not”
Kristie: “Did the doctor say this was good?”
Blaine: “Not really”
Kristie: “Did the doctor say this was bad?”
Blaine: “Not really”
Kristie: “So what happens now?”
Blaine: “I don’t know”
Kristie: “Are you going to be able to get that one test done again?”
Blaine: “The doctor didn’t mention it.”
Kristie: “Did you ask? Would it make a difference in the results?”
Blaine: “Um, no. I don't think so. I don't know.”
Kristie: “What did he say about your pain?”
Blaine: “He doesn’t know.”
Kristie: "Does he think it will get better anytime soon?"
Blaine: "He's not sure"
Kristie: “Well, what did he recommend you DO about it?”
Blaine: “See a neurosurgeon”
Kristie: “A neurosurgeon? Why a neurosurgeon? What could a neurosurgeon do?”
Blaine: “A neurosurgeon has something to do with nerves”
Kristie: “OH MY GOD I TOOK MEDICAL TERMINOLOGY IN COLLEGE I KNOW WHAT NEUROSURGEON MEANS WILL YOU JUST TELL ME WHAT CAN THEY DO TO HELP YOU??!?!?!?!?!”
Etc. Etc. Etc. Seriously, it’s a good thing we were on our cell phones because if I’d had a phone cord handy, I’d have strangled him with it.
Bottom line is this (I think): The tumors aren’t any bigger, which is good. But they’re still there. I don’t know the risk posed by dormant tumors. How often do they stay dormant? Can they stay dormant forever? Since they’re not smaller, they don’t plan to operate. Unless they grow larger, I don’t think we do anything. The oncologist wants to see Blaine in four months for repeat scans. And he gave him the go-ahead to meet with the oral surgeon on Thursday to discuss continuing the reconstruction work.
So overall, I guess its good news.
Isn’t it? Is it? Why did four weeks of radiation not eradicate the tumors? Or even shrink them? Is a dormant tumor no more threatening than any other non-malignant tumor? Are they just like fatty tumors now, in his head? Are there still cancer cells there? What might trigger them to become active again? Will the tumor shrink on its own? Why the hell do I mis-type tumor as tumour every single time I type the damn word?!?!?!?!?!
I’m sorry if I’m coming across as frustrated. I’m grateful they’ve not grown. Really. I am. But I had every intention of sitting here tonight, updating you with the fabulous news that they were GONE. I had already picked out the celebratory song I was going to put up on the site. Instead, we’re back to Seal’s “Crazy” because that’s my permanent state of mind these days.
His head is not the one I’m worried about anymore. It’s mine. It’s going to explode. Although since my brain is so tiny and confused, it probably won’t make that big of a mess.
I don’t know which is worse …. Bad news; no news; or confusing news. Well, yes, bad news would have been the worst and thankfully we didn’t get that. At least, I don’t think so. But I’m not really sure. All you tumor-veterans out there will have to explain this stupid process to me, so I can understand what today’s results mean. Because Lord knows my husband is incapable of asking the doctor the questions that **I** need him to ask. And since we were too cheap to pay for the airfare for me to go with him, after the Air Force turned down my request to accompany him on *their* dime …. I was unable to interrogate the doctor myself, so I needed for Blaine to understand my questions telepathically and relay them to the oncologist, which he failed to do. Nineteen years of marriage and the guy still can’t read my mind.
Apparently the day started off badly when they were unable to do the MRI with contrast like they wanted, because Blaine has the veins of a 7-yr old butterfly princess and no-one could get an IV going, even though “They poked me at least ten damn times and none of them worked!” So he only got one of the scans for which he was scheduled.
He had a meeting with the oncologist several hours later, and thanks to the time zone difference, it took me until after dinner tonight to get the results from him. But the oncologist had looked at the pictures, and that was his official, executive, authorized, I-went-to-medical-school diagnosis: No change.
What does that mean?????
This is the phone conversation we had. Verbatim. I swear, you will wonder how we’ve stayed married for so long.
Blaine: “So how was your day today?”
Kristie: “Knock off the chitchat and tell me what they said”
Blaine: “About the scans?” --- My hand to God, he said that. No, about the price of rice in China …. Yes you bonehead, about the scans.
Kristie: “Yes, about the scans”
Blaine: “The tumors are exactly like they were before, no change”
Kristie: “What do you mean no change? They’re supposed to be gone”
Blaine: “They’re not”
Kristie: “Well then they’re supposed to be smaller”
Blaine: “They’re not”
Kristie: “So the radiation didn’t work?”
Blaine: “I think it worked. The tumors haven’t grown.”
Kristie: “But what does that mean?”
Blaine: “It means they’re not any bigger.”
Kristie: “Yes, I’m aware of what the word ‘grown’ implies. So does that mean you still have cancer?”
Blaine: “I think it means the radiation made the cancer cells dormant”
Kristie: “So what does that mean?”
Blaine: “Dormant means it’s not growing”
Kristie: (really gritting my teeth about now) “Yes, I own a dictionary. I know the meaning of the word dormant. What does it mean with regards to your cancer? The tumors in YOUR head???”
Blaine: “I’m not sure”
Kristie: “So did the doctor say it will stay dormant?”
Blaine: “I don’t know”
Kristie: “Will it start growing again at some point?”
Blaine: “I hope not”
Kristie: “Did the doctor say this was good?”
Blaine: “Not really”
Kristie: “Did the doctor say this was bad?”
Blaine: “Not really”
Kristie: “So what happens now?”
Blaine: “I don’t know”
Kristie: “Are you going to be able to get that one test done again?”
Blaine: “The doctor didn’t mention it.”
Kristie: “Did you ask? Would it make a difference in the results?”
Blaine: “Um, no. I don't think so. I don't know.”
Kristie: “What did he say about your pain?”
Blaine: “He doesn’t know.”
Kristie: "Does he think it will get better anytime soon?"
Blaine: "He's not sure"
Kristie: “Well, what did he recommend you DO about it?”
Blaine: “See a neurosurgeon”
Kristie: “A neurosurgeon? Why a neurosurgeon? What could a neurosurgeon do?”
Blaine: “A neurosurgeon has something to do with nerves”
Kristie: “OH MY GOD I TOOK MEDICAL TERMINOLOGY IN COLLEGE I KNOW WHAT NEUROSURGEON MEANS WILL YOU JUST TELL ME WHAT CAN THEY DO TO HELP YOU??!?!?!?!?!”
Etc. Etc. Etc. Seriously, it’s a good thing we were on our cell phones because if I’d had a phone cord handy, I’d have strangled him with it.
Bottom line is this (I think): The tumors aren’t any bigger, which is good. But they’re still there. I don’t know the risk posed by dormant tumors. How often do they stay dormant? Can they stay dormant forever? Since they’re not smaller, they don’t plan to operate. Unless they grow larger, I don’t think we do anything. The oncologist wants to see Blaine in four months for repeat scans. And he gave him the go-ahead to meet with the oral surgeon on Thursday to discuss continuing the reconstruction work.
So overall, I guess its good news.
Isn’t it? Is it? Why did four weeks of radiation not eradicate the tumors? Or even shrink them? Is a dormant tumor no more threatening than any other non-malignant tumor? Are they just like fatty tumors now, in his head? Are there still cancer cells there? What might trigger them to become active again? Will the tumor shrink on its own? Why the hell do I mis-type tumor as tumour every single time I type the damn word?!?!?!?!?!
I’m sorry if I’m coming across as frustrated. I’m grateful they’ve not grown. Really. I am. But I had every intention of sitting here tonight, updating you with the fabulous news that they were GONE. I had already picked out the celebratory song I was going to put up on the site. Instead, we’re back to Seal’s “Crazy” because that’s my permanent state of mind these days.
His head is not the one I’m worried about anymore. It’s mine. It’s going to explode. Although since my brain is so tiny and confused, it probably won’t make that big of a mess.
Monday, September 11, 2006
The Truth About Cats and Dogs.
And Turtles and Frogs.
And the big fat lump of cancer in Blaine's head, which doesn't rhyme with anything.
Excerpt from our 2005 Annual Family Christmas Letter:
“Blaine and I finally traveled to Seattle for his major reconstructive surgery (two YEARS after he was originally diagnosed) UP; Blaine contracted a staph infection after the surgery and had to have six weeks of self-administered IV antibiotics, and two additional surgeries to clean up his leg, DOWN. The Seattle surgery wasn’t a complete success, DOWN; so he traveled to Augusta for corrective surgery this fall, UP. *That* surgery wasn’t successful, either, DOWN; but his doctors reassure us they can fix everything in the spring (Perhaps back out to Seattle we will go --- we’re still hoping for an UP ending to this whole saga!)
And with regard to his ongoing, never-ending reconstructive process, well, seriously, I figure it should culminate with the doctors finishing everything, and him finally getting a full set of teeth, about the age of 92, just in time for them to yank them out and give him dentures. Funny how “getting rid of his cancer” wound up being the easiest, least-stressful part of this whole process.”
And with teeth like a piranha, **that** final sentence came around to bite us firmly on the butt when we found out, just six weeks later, that the cancer was back.
The doctors hoped to remove it surgically this past spring, but there were two tumors; one diffused throughout his cheek, and one extremely close to his carotid artery; neither of which could be operated on. So they sent him back to Seattle for four weeks of a relatively new type of treatment, neutron beam radiation.
I remember back in high school, my sister Kelly had one of those personal-size suntan lamps you could use at home. A girlfriend of mine borrowed it and held it too close to her neck for too long and burned the ever-loving crap out of herself. Seriously, it’s a miracle she’s not scarred for life.
Blaine’s face and neck looked just like that when he came home from Seattle this past May. And if the OUTSIDE of his head looked like a lobster that had been left in boiling water too long, with the intensity of a thousand burning suns and a magnifying glass pointed right at him, I could only imagine how the INSIDE of his mouth, throat, sinuses, and neck must have felt. Raw hamburger meat, anyone?
His salivary glands were zapped and he can no longer produce saliva. Sucks if you’re trying to whistle. Or wet your lips. Or eat. Or swallow. Or sleep. Or breathe. He suffered at least a 10 percent permanent hearing loss. We’re hopeful that when he gets new tubes in his ears (what is he, four years old?) that he’ll be able to hear a little better. And then they’ll re-test him to see if it’s actually more than 10 percent, which I think it is, that or he’s perfected the art of ignoring me and pretending he just can’t hear what I’m saying, especially if I want to discuss anything earth-shattering like whether or not my new black dress makes my thighs look big or if he thinks Kate Hudson really left Chris Robinson for Owen Wilson. You know, important things like that. Any kind of spice or seasoning in his food or drinks had him reeling in pain. He pretty much lived on oatmeal and non-seasoned mashed potatoes for months. No coffee or soda, which was basically hell on earth in his opinion. His teeth are falling apart, a common after-effect of the radiation, but especially maddening to someone whose only goal in life the past three years has been to ACQUIRE teeth. The bald spot on the back of his head still hasn’t grown any hair. Ad nauseaum.
It’s been four months. We were told it takes four months for the full effects, and the success or failure, of the radiation to be known. I remember when he came home …. I thought four months sounded like a long time away. I thought things would be better by then. Things *are* better. They are still not great.
When he first came home he couldn’t sleep more than an hour at a stretch due to pain. Now he’s up to three or four hours in a row … but that’s all the sleep he gets at night. He’s exhausted. When he first came home, he would nap during the day because he was getting so little sleep at night. Then he started working half-days. Now he’s up to not-quite-full days. But at least he’s able to work. He still can’t have anything spicier than salt in his food, and he’s lost almost fifteen pounds, but he avoided a feeding tube, and best of all, he can drink coffee once again. He hasn’t had a beer in almost two years. Not that he was ever a big drinker, but it’s a little insulting to someone who named his dogs Fosters and Lager, that it’s painful to drink a beer.
Surprisingly, he is not bitter. I have never heard him ask, “Why me?” His faith is stronger than it has ever been. But he is discouraged. And tired. It has affected his self-esteem, his self-image, his psyche. It completely and totally de-railed his military career. It has affected his relationships with friends. With family. With me. Sometimes in a good way; sometimes not.
I admit to feeling frustrated. And a bit cheated. Ever since Kellen was born, one thing Blaine had looked forward to doing, as a previous baseball player himself, was coaching Kellen’s baseball teams. We couldn’t wait for t-ball; those adorable little kids with bats bigger than they are, hitting the ball and then running the bases backwards, or missing the balls in the outfield because they are too busy digging in the dirt. Blaine didn’t get to coach Kellen’s first year of t-ball in 2003; he had just been diagnosed with cancer and was recovering from his major resection surgery. Blaine didn’t get to coach Kellen’s second year of t-ball in 2004; Kendrie had been diagnosed and we didn’t feel he should commit to the responsibilities of being a coach with her still in the thick of harsh treatment. Blaine didn’t get to coach Kellen’s first year of coach-pitch in 2005; he was in Seattle having his free-flap procedure done, and all the lousy stuff that went along with that. Blaine didn’t get to coach Kellen’s second year of coach-pitch in 2006, he had just found out his cancer had returned and he was preparing for another surgery to have it removed, and then preparing for radiation when the surgery wasn’t successful.
Tonight, as I sat through Kellen’s first game of kid-pitch fall ball, I checked my watch to see if Blaine’s plane had landed yet in Seattle. He is returning for his four-month scans …. This week we find out if it worked. Once again, Blaine is not coaching.
Three and a half years since his original diagnosis. Remind me to tell you the story sometime of how he told me he had cancer. Funny, actually. But three and a half years …. I know people who don’t keep cars, houses, or jobs that long. It’s longer than some marriages last. He hasn't caught a break yet.
Best case scenario is the radiation got rid of all the cancer …. Then he can continue with the reconstruction work that was derailed when the cancer came back. It will be another big surgery in Seattle to fix the holes in this head (I know, that sounds so insensitive, but how else do I explain it?) and then give him some teeth. But maybe, just maybe, he could consider himself on the road to recovery at that point. Second best case scenario is that if the cancer isn’t all gone, it is at least shrunk enough that what is left can be removed surgically. Then the reconstruction would be pushed back -- again.
He just wants to finish. He wants to be done. Cancer-free. With a normal (or as close to normal as they can get) oral cavity. With teeth. With no holes in the roof of his mouth, so when he eats, food won’t come out his nose. One night he blew his nose and a piece of metal came out of it. If I hadn’t been so busy laughing I would have been totally grossed out. He would like to eat normal food. Drink a beer. Have teeth so he can feel comfortable smiling. Have normal speech patterns again. Sleep through the night. Get off the painkillers.
Coach his son’s baseball team.
Please pray for clear scan results tomorrow.
And the big fat lump of cancer in Blaine's head, which doesn't rhyme with anything.
Excerpt from our 2005 Annual Family Christmas Letter:
“Blaine and I finally traveled to Seattle for his major reconstructive surgery (two YEARS after he was originally diagnosed) UP; Blaine contracted a staph infection after the surgery and had to have six weeks of self-administered IV antibiotics, and two additional surgeries to clean up his leg, DOWN. The Seattle surgery wasn’t a complete success, DOWN; so he traveled to Augusta for corrective surgery this fall, UP. *That* surgery wasn’t successful, either, DOWN; but his doctors reassure us they can fix everything in the spring (Perhaps back out to Seattle we will go --- we’re still hoping for an UP ending to this whole saga!)
And with regard to his ongoing, never-ending reconstructive process, well, seriously, I figure it should culminate with the doctors finishing everything, and him finally getting a full set of teeth, about the age of 92, just in time for them to yank them out and give him dentures. Funny how “getting rid of his cancer” wound up being the easiest, least-stressful part of this whole process.”
And with teeth like a piranha, **that** final sentence came around to bite us firmly on the butt when we found out, just six weeks later, that the cancer was back.
The doctors hoped to remove it surgically this past spring, but there were two tumors; one diffused throughout his cheek, and one extremely close to his carotid artery; neither of which could be operated on. So they sent him back to Seattle for four weeks of a relatively new type of treatment, neutron beam radiation.
I remember back in high school, my sister Kelly had one of those personal-size suntan lamps you could use at home. A girlfriend of mine borrowed it and held it too close to her neck for too long and burned the ever-loving crap out of herself. Seriously, it’s a miracle she’s not scarred for life.
Blaine’s face and neck looked just like that when he came home from Seattle this past May. And if the OUTSIDE of his head looked like a lobster that had been left in boiling water too long, with the intensity of a thousand burning suns and a magnifying glass pointed right at him, I could only imagine how the INSIDE of his mouth, throat, sinuses, and neck must have felt. Raw hamburger meat, anyone?
His salivary glands were zapped and he can no longer produce saliva. Sucks if you’re trying to whistle. Or wet your lips. Or eat. Or swallow. Or sleep. Or breathe. He suffered at least a 10 percent permanent hearing loss. We’re hopeful that when he gets new tubes in his ears (what is he, four years old?) that he’ll be able to hear a little better. And then they’ll re-test him to see if it’s actually more than 10 percent, which I think it is, that or he’s perfected the art of ignoring me and pretending he just can’t hear what I’m saying, especially if I want to discuss anything earth-shattering like whether or not my new black dress makes my thighs look big or if he thinks Kate Hudson really left Chris Robinson for Owen Wilson. You know, important things like that. Any kind of spice or seasoning in his food or drinks had him reeling in pain. He pretty much lived on oatmeal and non-seasoned mashed potatoes for months. No coffee or soda, which was basically hell on earth in his opinion. His teeth are falling apart, a common after-effect of the radiation, but especially maddening to someone whose only goal in life the past three years has been to ACQUIRE teeth. The bald spot on the back of his head still hasn’t grown any hair. Ad nauseaum.
It’s been four months. We were told it takes four months for the full effects, and the success or failure, of the radiation to be known. I remember when he came home …. I thought four months sounded like a long time away. I thought things would be better by then. Things *are* better. They are still not great.
When he first came home he couldn’t sleep more than an hour at a stretch due to pain. Now he’s up to three or four hours in a row … but that’s all the sleep he gets at night. He’s exhausted. When he first came home, he would nap during the day because he was getting so little sleep at night. Then he started working half-days. Now he’s up to not-quite-full days. But at least he’s able to work. He still can’t have anything spicier than salt in his food, and he’s lost almost fifteen pounds, but he avoided a feeding tube, and best of all, he can drink coffee once again. He hasn’t had a beer in almost two years. Not that he was ever a big drinker, but it’s a little insulting to someone who named his dogs Fosters and Lager, that it’s painful to drink a beer.
Surprisingly, he is not bitter. I have never heard him ask, “Why me?” His faith is stronger than it has ever been. But he is discouraged. And tired. It has affected his self-esteem, his self-image, his psyche. It completely and totally de-railed his military career. It has affected his relationships with friends. With family. With me. Sometimes in a good way; sometimes not.
I admit to feeling frustrated. And a bit cheated. Ever since Kellen was born, one thing Blaine had looked forward to doing, as a previous baseball player himself, was coaching Kellen’s baseball teams. We couldn’t wait for t-ball; those adorable little kids with bats bigger than they are, hitting the ball and then running the bases backwards, or missing the balls in the outfield because they are too busy digging in the dirt. Blaine didn’t get to coach Kellen’s first year of t-ball in 2003; he had just been diagnosed with cancer and was recovering from his major resection surgery. Blaine didn’t get to coach Kellen’s second year of t-ball in 2004; Kendrie had been diagnosed and we didn’t feel he should commit to the responsibilities of being a coach with her still in the thick of harsh treatment. Blaine didn’t get to coach Kellen’s first year of coach-pitch in 2005; he was in Seattle having his free-flap procedure done, and all the lousy stuff that went along with that. Blaine didn’t get to coach Kellen’s second year of coach-pitch in 2006, he had just found out his cancer had returned and he was preparing for another surgery to have it removed, and then preparing for radiation when the surgery wasn’t successful.
Tonight, as I sat through Kellen’s first game of kid-pitch fall ball, I checked my watch to see if Blaine’s plane had landed yet in Seattle. He is returning for his four-month scans …. This week we find out if it worked. Once again, Blaine is not coaching.
Three and a half years since his original diagnosis. Remind me to tell you the story sometime of how he told me he had cancer. Funny, actually. But three and a half years …. I know people who don’t keep cars, houses, or jobs that long. It’s longer than some marriages last. He hasn't caught a break yet.
Best case scenario is the radiation got rid of all the cancer …. Then he can continue with the reconstruction work that was derailed when the cancer came back. It will be another big surgery in Seattle to fix the holes in this head (I know, that sounds so insensitive, but how else do I explain it?) and then give him some teeth. But maybe, just maybe, he could consider himself on the road to recovery at that point. Second best case scenario is that if the cancer isn’t all gone, it is at least shrunk enough that what is left can be removed surgically. Then the reconstruction would be pushed back -- again.
He just wants to finish. He wants to be done. Cancer-free. With a normal (or as close to normal as they can get) oral cavity. With teeth. With no holes in the roof of his mouth, so when he eats, food won’t come out his nose. One night he blew his nose and a piece of metal came out of it. If I hadn’t been so busy laughing I would have been totally grossed out. He would like to eat normal food. Drink a beer. Have teeth so he can feel comfortable smiling. Have normal speech patterns again. Sleep through the night. Get off the painkillers.
Coach his son’s baseball team.
Please pray for clear scan results tomorrow.
Sunday, September 10, 2006
BUT I DON’T *FEEL* LIKE A HERO. AND I’M CERTAINLY NOT QUIET.
I was fortunate to attend the 2nd Annual Quiet Heroes Luncheon in Atlanta yesterday, honoring the mothers (and some fathers, too) of children with cancer, and serving as a fundraiser for two worthwhile organizations, CURE Childhood Cancer and CureSearch. And much like I looked around earlier this week at other 40-yr olds, and thought, “Well, sure, THAT person is a grown up, but I’m not” I found myself looking around the room yesterday at the luncheon, gazing at the other pediatric cancer moms I’ve gotten to know these past three years, thinking to myself, “Well, sure, they are heroes, but I’m not!”
I had a wonderful time, re-connecting with women I hadn’t seen in a while, visiting with and meeting some of the dozens and dozens of volunteers who worked so hard to make this event possible, enjoying a wonderful lunch, silent auction, and listening to speakers that I enjoyed thoroughly. My mom is here visiting, so I was able to take her as my guest, and it was a lovely girls’ day out. Getting dressed up, fancy desserts, and waiters who pour your salad dressing from a silver gravy bowl with a cloth napkin draped over their arm ….. sure beats taking my kids for a Happy Meal at McDonalds!
The Quiet Heroes tribute is the brainchild of Chris Glavine, wife of professional baseball player Tom Glavine, and Kristin Connor, executive director of CURE Childhood Cancer --- more importantly, Kristin is a personal friend of mine. MOST importantly, she is mom to Brandon, a neuroblastoma survivor, and his brother Ryan.
I could go on and on about how inspiring this luncheon is for cancer moms, and how connected I feel to the other women who come from all over the state --and the country -- for this event. In addition, it raised over $100,000 for pediatric cancer research last year, and sold out again this year, hopefully raising even more. I know Kristin would say it’s not about the money, but I’m sure every mom there, in addition to appreciating the work and effort that went into the event, also appreciates anything that will further the cause of finding and funding a cure. So a big thank you to the hundreds of people and businesses who donated silent auction items, and sponsored the event. Most of all, thank you to Chris and Kristin for all their hard work.
The keynote speaker for the day was Allison Clarke, Executive Director and Founder of Flashes of Hope, and mom to Quinn, a rhabdomyosarcoma survivor. Flashes of Hope is an amazing organization and I hope Allison and all her directors, photographers, makeup artists, and volunteers know how very grateful we are for their work. The photo-quad of pictures of Kendrie and I on this site was taken by Flashes of Hope at Scottish Rite. They have photo shoots in cancer clinics all over the country and you can visit their website to see if they’re coming to your clinic anytime soon. You can also visit their website to learn more about this fabulous organization and how you can help by making a donation (all photos are provided to families free of charge). I guarantee if you have pictures taken of you and your child, or even just your child, you will have a fun time, and will receive beautiful keepsakes to treasure always. I’m still simply glad that on the day Flashes of Hope was at **our** clinic, I had actually gotten up that morning and “dressed” before going out. I’ve shown up at the clinic in sweat pants, with no make up and my hair in a pony tail, more times than I can count!
But hands down, the best part of the day was spending time with the moms I’ve gotten to know. It’s odd, that I could feel such a connection to women that I only see once or twice a year. These are ladies that I would never have met otherwise, and we don’t live near enough to one another to visit on a regular basis, yet when I talk about them, it’s always, “My friend this” and “My friend that”. I truly consider these women friends and care about what happens to their kids, just like I know they care about Kendrie. It’s a warped, demented little sorority, but I’m so grateful to be a part of it.
I had a wonderful time, re-connecting with women I hadn’t seen in a while, visiting with and meeting some of the dozens and dozens of volunteers who worked so hard to make this event possible, enjoying a wonderful lunch, silent auction, and listening to speakers that I enjoyed thoroughly. My mom is here visiting, so I was able to take her as my guest, and it was a lovely girls’ day out. Getting dressed up, fancy desserts, and waiters who pour your salad dressing from a silver gravy bowl with a cloth napkin draped over their arm ….. sure beats taking my kids for a Happy Meal at McDonalds!
The Quiet Heroes tribute is the brainchild of Chris Glavine, wife of professional baseball player Tom Glavine, and Kristin Connor, executive director of CURE Childhood Cancer --- more importantly, Kristin is a personal friend of mine. MOST importantly, she is mom to Brandon, a neuroblastoma survivor, and his brother Ryan.
I could go on and on about how inspiring this luncheon is for cancer moms, and how connected I feel to the other women who come from all over the state --and the country -- for this event. In addition, it raised over $100,000 for pediatric cancer research last year, and sold out again this year, hopefully raising even more. I know Kristin would say it’s not about the money, but I’m sure every mom there, in addition to appreciating the work and effort that went into the event, also appreciates anything that will further the cause of finding and funding a cure. So a big thank you to the hundreds of people and businesses who donated silent auction items, and sponsored the event. Most of all, thank you to Chris and Kristin for all their hard work.
The keynote speaker for the day was Allison Clarke, Executive Director and Founder of Flashes of Hope, and mom to Quinn, a rhabdomyosarcoma survivor. Flashes of Hope is an amazing organization and I hope Allison and all her directors, photographers, makeup artists, and volunteers know how very grateful we are for their work. The photo-quad of pictures of Kendrie and I on this site was taken by Flashes of Hope at Scottish Rite. They have photo shoots in cancer clinics all over the country and you can visit their website to see if they’re coming to your clinic anytime soon. You can also visit their website to learn more about this fabulous organization and how you can help by making a donation (all photos are provided to families free of charge). I guarantee if you have pictures taken of you and your child, or even just your child, you will have a fun time, and will receive beautiful keepsakes to treasure always. I’m still simply glad that on the day Flashes of Hope was at **our** clinic, I had actually gotten up that morning and “dressed” before going out. I’ve shown up at the clinic in sweat pants, with no make up and my hair in a pony tail, more times than I can count!
But hands down, the best part of the day was spending time with the moms I’ve gotten to know. It’s odd, that I could feel such a connection to women that I only see once or twice a year. These are ladies that I would never have met otherwise, and we don’t live near enough to one another to visit on a regular basis, yet when I talk about them, it’s always, “My friend this” and “My friend that”. I truly consider these women friends and care about what happens to their kids, just like I know they care about Kendrie. It’s a warped, demented little sorority, but I’m so grateful to be a part of it.
Friday, September 08, 2006
To "Gentle Reminder" in my guestbook:
So many thoughts on how to respond; so little time.
Thought #1: If you are correct, and I offended anyone with the contents of my “Birthday Bitching” post, I’m truly sorry. I have to assume you don’t read this site regularly, or you would know that my self-deprecating sense of what (I hope) passes for humor is the norm here …. but it is never intentionally hurtful or insensitive or disrespectful. I would be crushed to think I had insulted the families of Haley, Jay, Cameron, Marcus, Clare, or anyone else I “know” through Caringbridge and consider a friend. If I did, I’m genuinely, truly sorry.
Thought #2: You bring up a valid point …. Caringbridge is a service provided for families in need. Another reason I assume you don’t read my journal regularly is that if you did, you would know that I’ve mentioned several times in the past month or so leaving Caringbridge and moving my journal to a more traditional “blogger” platform. However, although I don’t mention it much, my family is still in “need” thanks to Blaine and his stupid, stupid, stupid, stupid times infinity head and neck cancer (see Thought #3) and so I’ve decided to stay here a while longer. And, while I don’t want to give anything away prematurely, I’m collaborating on a writing project with someone that I hope will be beneficial to the CB community and eventually allow me to give back some of the kindness that has been shown to me and my family.
Thought #3: Cancer sucks. I could tell you about the half hour I spent with Kendrie and her ONCOLOGIST yesterday, talking about LATE TERM EFFECTS of her CHEMOTHERAPY regimen, and RELAPSE SIGNS of LEUKEMIA but that’s not too cheerful. I had an entire journal entry ready to go about Blaine, and how he’s feeling, and what is happening for him next week, because people have been kind enough to ask in the guestbook.I could write about how he hasn’t slept through a single night in the past four months due to the extreme burning and pain from the radiation. How he wakes up at midnight, or 2am, or 4am, and has to sit on the side of the bed for ten minutes before he can even get up and walk, and then he spends hours sitting on the sofa all night waiting for his pain meds to work so he can go back to sleep. Or about the frustration he feels about not being able to go outside and play with his kids because the heat and humidity wreck his sinuses and he’s so fatigued and exhausted and depressed all the time. But then I wonder if griping about the crappy parts of our life would be better or worse than poking fun at the good parts of our life, which thankfully, the latter outnumbers the former. Crappy = bad. Funny = good. At least to an insensitive person like me. And then I think about how you can’t please all the people all the time. And then I think about why do I care what you think, anyway?
Thought #5: {{{{{ internet raspberry to you }}}}}
Thought #6: You’re not the boss of me.
Thought #7: The beauty of Caringbridge is that it’s a VOLUNTARY community, meaning I VOLUNTEER to write about my life and you can VOLUNTEER not to read it.
Thought #8: Wow, that was really, really, really, really, really, really, really, really immature of me to say. But it made me feel better. And that’s all that matters here in Kristie-ville. Me, feeling better, about myself. Well, I’ve got to go. I’m a very busy person, you know, with lots of things to do. Like knock some blind, crippled people over, or flatten the tires on some wheelchairs. (Oh, shoot. Now I’m being all disrespectful again.)
Although, in all seriousness, see Thought #1.
Thought #1: If you are correct, and I offended anyone with the contents of my “Birthday Bitching” post, I’m truly sorry. I have to assume you don’t read this site regularly, or you would know that my self-deprecating sense of what (I hope) passes for humor is the norm here …. but it is never intentionally hurtful or insensitive or disrespectful. I would be crushed to think I had insulted the families of Haley, Jay, Cameron, Marcus, Clare, or anyone else I “know” through Caringbridge and consider a friend. If I did, I’m genuinely, truly sorry.
Thought #2: You bring up a valid point …. Caringbridge is a service provided for families in need. Another reason I assume you don’t read my journal regularly is that if you did, you would know that I’ve mentioned several times in the past month or so leaving Caringbridge and moving my journal to a more traditional “blogger” platform. However, although I don’t mention it much, my family is still in “need” thanks to Blaine and his stupid, stupid, stupid, stupid times infinity head and neck cancer (see Thought #3) and so I’ve decided to stay here a while longer. And, while I don’t want to give anything away prematurely, I’m collaborating on a writing project with someone that I hope will be beneficial to the CB community and eventually allow me to give back some of the kindness that has been shown to me and my family.
Thought #3: Cancer sucks. I could tell you about the half hour I spent with Kendrie and her ONCOLOGIST yesterday, talking about LATE TERM EFFECTS of her CHEMOTHERAPY regimen, and RELAPSE SIGNS of LEUKEMIA but that’s not too cheerful. I had an entire journal entry ready to go about Blaine, and how he’s feeling, and what is happening for him next week, because people have been kind enough to ask in the guestbook.
Thought #5: {{{{{ internet raspberry to you }}}}}
Thought #6: You’re not the boss of me.
Thought #7: The beauty of Caringbridge is that it’s a VOLUNTARY community, meaning I VOLUNTEER to write about my life and you can VOLUNTEER not to read it.
Thought #8: Wow, that was really, really, really, really, really, really, really, really immature of me to say. But it made me feel better. And that’s all that matters here in Kristie-ville. Me, feeling better, about myself. Well, I’ve got to go. I’m a very busy person, you know, with lots of things to do. Like knock some blind, crippled people over, or flatten the tires on some wheelchairs. (Oh, shoot. Now I’m being all disrespectful again.)
Although, in all seriousness, see Thought #1.
Wednesday, September 06, 2006
Can You Guess What Day It Is?
Well, can you guess what day it is? Can you? Do you need a hint? Do you maybe need FORTY of them????
On a side note, thanks to those of you who reminded me that I *can* purchase the Jon Almett CD online, directly from his website. I tried to find it at iTunes and when it wasn’t there, I panicked a bit. Because I didn’t remember the very website I had recommended to others, so many times. Nope, not a clue.
They say the mind is the first thing to go.
The body is running a close second.
I have an appointment for my “annual” exam next week and decided since I’mgetting so old and decrepit turning 40, I would go ahead and meet with my new, extremely-good-looking-according-to-Blaine physician for a whole physical, head to toe. I can’t even remember the last time I had a physical. Ten years??? So I grabbed a post it sticky-note and started jotting down things I wanted to ask him about. I’ve now graduated to a full-length sheet of notebook paper.
I am flat-dab falling apart.
The funeral music is appropriate, no?
So I will go next week and bombard the doctor with a laundry list of things that are wrong with me. Because that’s what old people do. We complain about our health a lot. And gripe about the cost of everything. And wonder what the hell is wrong with young people these days. And knit. And tell anyone who'll listen that "this crap isn't music!" And start lots of sentences with, "Well, back in MY day ..........." And reminisce about the past. And tell my kids about having to walk to and from school, uphill both ways, in the snow, in my bare feet because we couldn’t afford shoes. Then, and only then, when I’m done doing all that, I’ll make Blaine take me to dinner at Luby’s at 3pm.
Speaking of Blaine, when I woke up this morning, I said to him, “Let the mocking begin. You are married to an old lady.” He replied, “Don’t feel bad, honey, 40’s not old.” At the look on my face, he said earnestly, “Really! It’s not so bad.” “Oh really?” I said, “You got cancer when you were 40”. “No,” he responded, “I got cancer when I was 38. When I turned 40 I got bifocals, high blood pressure medication, and had hernia surgery.”
OK. Good. That makes me feel a lot better.
Well, I should go now, and fix myself some Cream of Wheat for breakfast. And complain about my rheumatism to someone. And have you seen how much a pound of hamburger meat costs nowadays????
Ack. There’s no hope.
On a side note, thanks to those of you who reminded me that I *can* purchase the Jon Almett CD online, directly from his website. I tried to find it at iTunes and when it wasn’t there, I panicked a bit. Because I didn’t remember the very website I had recommended to others, so many times. Nope, not a clue.
They say the mind is the first thing to go.
The body is running a close second.
I have an appointment for my “annual” exam next week and decided since I’m
I am flat-dab falling apart.
The funeral music is appropriate, no?
So I will go next week and bombard the doctor with a laundry list of things that are wrong with me. Because that’s what old people do. We complain about our health a lot. And gripe about the cost of everything. And wonder what the hell is wrong with young people these days. And knit. And tell anyone who'll listen that "this crap isn't music!" And start lots of sentences with, "Well, back in MY day ..........." And reminisce about the past. And tell my kids about having to walk to and from school, uphill both ways, in the snow, in my bare feet because we couldn’t afford shoes. Then, and only then, when I’m done doing all that, I’ll make Blaine take me to dinner at Luby’s at 3pm.
Speaking of Blaine, when I woke up this morning, I said to him, “Let the mocking begin. You are married to an old lady.” He replied, “Don’t feel bad, honey, 40’s not old.” At the look on my face, he said earnestly, “Really! It’s not so bad.” “Oh really?” I said, “You got cancer when you were 40”. “No,” he responded, “I got cancer when I was 38. When I turned 40 I got bifocals, high blood pressure medication, and had hernia surgery.”
OK. Good. That makes me feel a lot better.
Well, I should go now, and fix myself some Cream of Wheat for breakfast. And complain about my rheumatism to someone. And have you seen how much a pound of hamburger meat costs nowadays????
Ack. There’s no hope.
Sunday, September 03, 2006
EIGHT STEPS TO A QUASI-SUCCESSFUL BIRTHDAY:
1. Take birthday child to restaurant of her choice, which is Steak & Shake this year. Make all three children pose for cheesy photos, until birthday girl is totally distracted by arrival of "hottie" at next table.
2. Continue making kids pose for photos, threatening to withhold cake and ice cream if they don't cooperate.
3. Feel relief that you found a box of candles in the cupboard, since you remembered the cake, icing and sprinkles, but forgot the candles. Laugh when you remember conversation you had with birthday girl's brother earlier in the week:
Kellen: What kind of cake is Kendrie getting?
Kristie: Chocolate with chocolate frosting. That's what she picked.
Kellen: But what kind? Spiderman? Superman? What kind?
Kristie: No kind. I'm making it myself. Plain chocolate cake.
Kellen: But WHAT SHAPE is it going to be in???
Kristie: The shape of my 13x9 pan, you doofus.
4. Feel resigned when the birthday child effectively ends family time by insisting she eat her birthday cake in the living room so she can watch her new dvd of "Cheaper by the Dozen 2" at the same time.
5. Feel happiness as you admire the joy on the face of birthday girl as she poses with new bicycle that she loves more than anything on this earth. Truly, you couldn't have picked a better, more perfect gift.
6. Feel some concern when you realize you have maybe, just possibly bought the wrong size bike .... considering birthday girl can't touch the ground or stop herself without falling over or running into the back of Blaine's truck.
7. Feel relief that you've married a relatively handy man who can remove reflector off back of bike and lower the seat another two inches.
8. Feel extreme guilt when you discover even the extra two inches isn't enough, and you have to face the disappointment from birthday girl that the greatest bike on earth is going to have to go back to the store.
Photo Not Available:
Spend last hour of the evening at Toys 'R Us, letting birthday girl ride every bike up and down the aisle until she finds one that is even MORE perfect than the one before. Thank heavens -- that was a near disaster, averted.
Saturday, September 02, 2006
HAPPY BIRTHDAY, KENDRIE!!
I’ll update on her birthday extravaganza (that’s about the biggest exaggeration on the planet) complete with photos tomorrow, but for today I’ll leave you with a few brief glimpses into my day:
HAPPIEST MOMENT OF MY DAY: When our family was eating at Steak & Shake tonight for dinner (hey, it’s where the birthday girl chose) and a family with two teenage boys walked in. Kendrie took one look and announced, “Oh, he is a HOTTIE!” Blaine looked at me and telepathically, we communicated the same message to one another: Thank goodness, she likes boys.
SECOND MOST EMBARRASSING MOMENT OF MY DAY: Every moment after that we were at dinner, because Kendrie kept staring at that boy (“But mom, I’m not staring, I’m just watching him with my eyes”) and announcing how hot he was, and did he have a cell phone so she could call him, etc. I’m sure the boy was very confused about his potential 7-yr old stalker.
SINGLE MOST EMBARRASSING MOMENT OF MY DAY: When I got up at the restaurant to check on Brayden, making the comment to Blaine that “She sure has been in the bathroom a long time” and got half way across on the restaurant when Kendrie yelled at me, “She might be POOPING! Sometimes it takes me a long time, too!”
On second thought, that should be Kendrie’s most embarrassing moment. And then she wondered why that teenage boy didn’t seem too impressed with her calf-eyes and mooning over him all night.
Poor Nicholas. Overthrown for an older man.
HAPPIEST MOMENT OF MY DAY: When our family was eating at Steak & Shake tonight for dinner (hey, it’s where the birthday girl chose) and a family with two teenage boys walked in. Kendrie took one look and announced, “Oh, he is a HOTTIE!” Blaine looked at me and telepathically, we communicated the same message to one another: Thank goodness, she likes boys.
SECOND MOST EMBARRASSING MOMENT OF MY DAY: Every moment after that we were at dinner, because Kendrie kept staring at that boy (“But mom, I’m not staring, I’m just watching him with my eyes”) and announcing how hot he was, and did he have a cell phone so she could call him, etc. I’m sure the boy was very confused about his potential 7-yr old stalker.
SINGLE MOST EMBARRASSING MOMENT OF MY DAY: When I got up at the restaurant to check on Brayden, making the comment to Blaine that “She sure has been in the bathroom a long time” and got half way across on the restaurant when Kendrie yelled at me, “She might be POOPING! Sometimes it takes me a long time, too!”
On second thought, that should be Kendrie’s most embarrassing moment. And then she wondered why that teenage boy didn’t seem too impressed with her calf-eyes and mooning over him all night.
Poor Nicholas. Overthrown for an older man.
Friday, September 01, 2006
“Summer of ‘99”
Seven years ago today, I looked like this:
Big. Fat. Pregnant. (And yes, that strapping young lad on the horse is Kellen.)
Expecting our third child; a baby we *thought* would was a girl but the ultrasound tech wasn’t 100 percent sure ….. so we had the boy’s name “Brooks” as a back-up, just in case “Kendrie” grew male parts at the last second. Didn’t happen, and hasn’t happened yet, much to her disappointment.
We had taken the kids to a Labor Day festival and they wanted to ride ponies. Being only ages one and two themselves, Blaine and I didn’t trust Kellen and Brayden not to take headers right off the ponies … so we walked along with them. Since I was almost two weeks overdue (Ha! I guess Kendrie’s been over-staying her welcome in my bed for longer than I even realized!) I hoped waddling, er, walking around might help.
I guess it did, because less than twelve hours later, I woke up in bed, thinking, “Eeewwwww! I just wet the bed!” only to realize my water had broken.
Later that next day, after two hours of pushing, the doctor finally grabbed the salad tongs and our third littlest blessing made her arrival. 8 lb 10 oz. Red faced, bald, alien-ish, beautiful.
We love you, Kendrie Dawn, and can’t wait to celebrate your birthday with you tomorrow!
PS. I had the most awesome song ready to play on this site …. “Summer of ‘99”, a parody of "Summer of ’69" off of the Camp Sunshine CD we got at Family camp a few years back. All of a sudden today, I couldn’t find the cd anyplace. Anywhere. So naturally, I blamed my kids.
Turns out, do you know where it was?? In my cd player. That I sold. AT MY GARAGE SALE A FEW WEEKS AGO!!! I’m so annoyed with myself!! It’s not a cd that can be bought at a store or online anywhere ---- it was made especially by Jon Allmett for Camp Sunshine; I’m just sick about losing it! If any of our fellow Camp Sunshine families have it, and could burn me a copy, I would happily buy the cd and pay for postage and shipping and shoot, I’ll even pay you for your time and effort or buy you dinner or send a thank you gift --- I’m desperate! (Well, anything but give you a foot massage. That, I will not do.)
PSS. Do you know what is unfortunate in that picture up there, even more unfortunate than my ginormous belly and outdated bangs? The fact that I not only still have that maternity shirt, but WORE IT during this last pregnancy! Obviously, I need to shop more.
Big. Fat. Pregnant. (And yes, that strapping young lad on the horse is Kellen.)
Expecting our third child; a baby we *thought* would was a girl but the ultrasound tech wasn’t 100 percent sure ….. so we had the boy’s name “Brooks” as a back-up, just in case “Kendrie” grew male parts at the last second. Didn’t happen, and hasn’t happened yet, much to her disappointment.
We had taken the kids to a Labor Day festival and they wanted to ride ponies. Being only ages one and two themselves, Blaine and I didn’t trust Kellen and Brayden not to take headers right off the ponies … so we walked along with them. Since I was almost two weeks overdue (Ha! I guess Kendrie’s been over-staying her welcome in my bed for longer than I even realized!) I hoped waddling, er, walking around might help.
I guess it did, because less than twelve hours later, I woke up in bed, thinking, “Eeewwwww! I just wet the bed!” only to realize my water had broken.
Later that next day, after two hours of pushing, the doctor finally grabbed the salad tongs and our third littlest blessing made her arrival. 8 lb 10 oz. Red faced, bald, alien-ish, beautiful.
We love you, Kendrie Dawn, and can’t wait to celebrate your birthday with you tomorrow!
PS. I had the most awesome song ready to play on this site …. “Summer of ‘99”, a parody of "Summer of ’69" off of the Camp Sunshine CD we got at Family camp a few years back. All of a sudden today, I couldn’t find the cd anyplace. Anywhere. So naturally, I blamed my kids.
Turns out, do you know where it was?? In my cd player. That I sold. AT MY GARAGE SALE A FEW WEEKS AGO!!! I’m so annoyed with myself!! It’s not a cd that can be bought at a store or online anywhere ---- it was made especially by Jon Allmett for Camp Sunshine; I’m just sick about losing it! If any of our fellow Camp Sunshine families have it, and could burn me a copy, I would happily buy the cd and pay for postage and shipping and shoot, I’ll even pay you for your time and effort or buy you dinner or send a thank you gift --- I’m desperate! (Well, anything but give you a foot massage. That, I will not do.)
PSS. Do you know what is unfortunate in that picture up there, even more unfortunate than my ginormous belly and outdated bangs? The fact that I not only still have that maternity shirt, but WORE IT during this last pregnancy! Obviously, I need to shop more.
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