Posts
17 Months...
Sigh...precious age...goes by too fast...
Pictures here if the slideshow above doesn't work for you.
Sunday, May 24, 2009
The Pied Piper...
I frequently say that Trevor is the Pied Piper of Juliette. Last night he got sent to time out for just ridiculous unnecessary roughness. He just tackles her and jumps on her for no reason except that he can (yes, obviously it's a cry for attention my amateur child psych friends). Anyways, he's out of the room for all of 5 seconds before she's wandering the house looking for him. And she squeals with delight when she finds him, immediately taking a seat next to him in time out, waiting patiently for him to be able to come out and play again.
I frequently say that Trevor is the Pied Piper of Juliette. Last night he got sent to time out for just ridiculous unnecessary roughness. He just tackles her and jumps on her for no reason except that he can (yes, obviously it's a cry for attention my amateur child psych friends). Anyways, he's out of the room for all of 5 seconds before she's wandering the house looking for him. And she squeals with delight when she finds him, immediately taking a seat next to him in time out, waiting patiently for him to be able to come out and play again.
Tuesday, May 19, 2009
Not a real post...
But I know I've been out of touch so I should post something, anything...
I've been thinking about getting a wig. My hair is thinning, not to the point where other people notice, but there are handfuls every day and I think at some point it will be unmanageable.
So do you think I could pull off this look?
OK, that's all I can muster for now. Real post forthcoming within a few days.
But I know I've been out of touch so I should post something, anything...
I've been thinking about getting a wig. My hair is thinning, not to the point where other people notice, but there are handfuls every day and I think at some point it will be unmanageable.
So do you think I could pull off this look?
OK, that's all I can muster for now. Real post forthcoming within a few days.
Sunday, April 26, 2009
Tuesday, April 21, 2009
Sweet 16...
...and never been kissed? Hardly. This one gets lots of kisses.
Even occasionally getting a kiss from these rowdy boys...
Does Hayden look like he'd rather be throwing a ball or sitting for pictures with Mom?
And Trevalicous? Well, his news at school usually ends with "...and I love mommy." So he still has a little soft spot for me (and I for him).
Miss J. is quite the walker these days. You can't turn your back on her anymore or she's gone.
Here is Hayden and Trevor's attempt to cooperate for a picture together. Hayden is about half a second from rolling over onto Trevor. Boys!
Last, but not least, an attempt to get all three in a picture together. This picture is so worth a thousand words. They're wrestling over a ball, paying no attention to me, Juliette is looking at them as if to say "Can you please just cooperate so we can get this over with?" You're in trouble if your 16 month old is your best listener.
...and never been kissed? Hardly. This one gets lots of kisses.
Even occasionally getting a kiss from these rowdy boys...
Does Hayden look like he'd rather be throwing a ball or sitting for pictures with Mom?
And Trevalicous? Well, his news at school usually ends with "...and I love mommy." So he still has a little soft spot for me (and I for him).
Miss J. is quite the walker these days. You can't turn your back on her anymore or she's gone.
Here is Hayden and Trevor's attempt to cooperate for a picture together. Hayden is about half a second from rolling over onto Trevor. Boys!
Last, but not least, an attempt to get all three in a picture together. This picture is so worth a thousand words. They're wrestling over a ball, paying no attention to me, Juliette is looking at them as if to say "Can you please just cooperate so we can get this over with?" You're in trouble if your 16 month old is your best listener.
Sunday, April 12, 2009
Traditions...
Every year, we visit the Easter Bunny at the mall (see 2008, 2007 ). It's hit or miss, really. Because honestly, when you're a tot, a 6 foot bunny rabbit is a pretty freaky sight. But still, we persevere. Juliette got dressed up in her best dress...
What's that, you can't see the shoes? Here we are wandering over to the Godiva kiosk...
The boys waited patiently for their chance to tell the Easter Bunny what they'd like to find in their baskets. Trevor was really hoping for the movie Bolt and Hayden wanted two movies and two books...
Could they love the bunny just a little more? Could this be any more perfect? Is something missing?
Oh yes, we're missing Juliette. The angel in the pink dress...
In case it needs interpretation, Juliette is screaming at the the sight of the big scary bunny and Trevor is covering his ears because the screaming is SO LOUD. Hayden is just posing away because when you're the oldest, your job is to keep posing on the off chance that the little ones might behave for a second so the picture can be taken.
This last shot is from the mall people. The best they could do under the circumstances. Juliette is still red faced and miserable, but not actually screaming or trying to climb off the bench. Oh well, better luck next year. I'm not holding my breath for the Santa pics this year.
Every year, we visit the Easter Bunny at the mall (see 2008, 2007 ). It's hit or miss, really. Because honestly, when you're a tot, a 6 foot bunny rabbit is a pretty freaky sight. But still, we persevere. Juliette got dressed up in her best dress...
What's that, you can't see the shoes? Here we are wandering over to the Godiva kiosk...
The boys waited patiently for their chance to tell the Easter Bunny what they'd like to find in their baskets. Trevor was really hoping for the movie Bolt and Hayden wanted two movies and two books...
Could they love the bunny just a little more? Could this be any more perfect? Is something missing?
Oh yes, we're missing Juliette. The angel in the pink dress...
In case it needs interpretation, Juliette is screaming at the the sight of the big scary bunny and Trevor is covering his ears because the screaming is SO LOUD. Hayden is just posing away because when you're the oldest, your job is to keep posing on the off chance that the little ones might behave for a second so the picture can be taken.
This last shot is from the mall people. The best they could do under the circumstances. Juliette is still red faced and miserable, but not actually screaming or trying to climb off the bench. Oh well, better luck next year. I'm not holding my breath for the Santa pics this year.Hope your Easter was a happy one.
Wednesday, April 08, 2009
Mad Skills...
Here is Miss J, in all her wobbly glory, stepping around the living room. Hopefully we can finally give those dirty knees a rest and start getting some use out of our adorable shoes. Note to self...stop buying baby shoes, really, just stop, enough already.
In other news, I made it through chemo round #4. We added a new drug this time, Avastin, which is one of the newer monoclonal antibodies which is supposed to target the cancer cells and turn off their ability to build new blood supplies. The side effects aren't too bad, my blood pressure is up a little. I did have a reaction to the oxaliplatin this time, just a little itching, but they jacked me up with benadryl and steroids. I don't know what it means yet in terms of my ability to continue taking the drug. I'm hoping we can stick with it a little longer at least.
We met with a surgeon last Monday and came up with a new plan. We're going to do 2 more rounds of chemo and then switch over to chemo/radiation. The chemo will be weekly infusions and daily pills. The radiation will be 5 days/week for 5 weeks. Then I'll get a 4-week break before they'll do surgery to remove the peritoneal implant. Then another 6-weeks recovery before we start back up with the chemo infusions every two weeks for another 6 cycles.
Then we see what happens...the surgeon wasn't overly optimistic...said that in cases like this they rarely see surgery as curative. He said the peritoneal implant won't kill me, but it's an indication of the spread of disease and that's the problem. So we'll do chemo for a while first to try to knock back the microscopic disease and then go after the tumor. He talked us out of pursuing the hot chemo surgery (HIPEC) for now. He said with just a single known implant instead of widespread peritoneal disease, the mortality rate from the HIPEC surgery itself isn't worth the risk.
So I'm excited to have a plan. Chemo, chemo/radiation, surgery, recovery, chemo...then a break. So maybe in November and December we can have some nice time with no treatments. I'm feeling a little worn these days with the cumulative effects of the chemo and working and everything else. But really, more good days than bad.
Here is Miss J, in all her wobbly glory, stepping around the living room. Hopefully we can finally give those dirty knees a rest and start getting some use out of our adorable shoes. Note to self...stop buying baby shoes, really, just stop, enough already.
In other news, I made it through chemo round #4. We added a new drug this time, Avastin, which is one of the newer monoclonal antibodies which is supposed to target the cancer cells and turn off their ability to build new blood supplies. The side effects aren't too bad, my blood pressure is up a little. I did have a reaction to the oxaliplatin this time, just a little itching, but they jacked me up with benadryl and steroids. I don't know what it means yet in terms of my ability to continue taking the drug. I'm hoping we can stick with it a little longer at least.
We met with a surgeon last Monday and came up with a new plan. We're going to do 2 more rounds of chemo and then switch over to chemo/radiation. The chemo will be weekly infusions and daily pills. The radiation will be 5 days/week for 5 weeks. Then I'll get a 4-week break before they'll do surgery to remove the peritoneal implant. Then another 6-weeks recovery before we start back up with the chemo infusions every two weeks for another 6 cycles.
Then we see what happens...the surgeon wasn't overly optimistic...said that in cases like this they rarely see surgery as curative. He said the peritoneal implant won't kill me, but it's an indication of the spread of disease and that's the problem. So we'll do chemo for a while first to try to knock back the microscopic disease and then go after the tumor. He talked us out of pursuing the hot chemo surgery (HIPEC) for now. He said with just a single known implant instead of widespread peritoneal disease, the mortality rate from the HIPEC surgery itself isn't worth the risk.
So I'm excited to have a plan. Chemo, chemo/radiation, surgery, recovery, chemo...then a break. So maybe in November and December we can have some nice time with no treatments. I'm feeling a little worn these days with the cumulative effects of the chemo and working and everything else. But really, more good days than bad.
Monday, March 30, 2009
C3 Congressional Butt-in - March 31, 2009
On Tuesday, March 31st, take five minutes to call Congress in support of legislation that would create a National Colorectal Cancer Screening Program.
C3 has made it easy for you to call Congress.Simply dial 866-615-3375 and enter your ZIP code at the prompt.
You will be directly connected to the offices of your Members of Congress.
When your phone call is answered, you simply need to say, “I support the Colorectal Cancer Prevention, Early Detection and Treatment Act.” (Click here for a more detailed script.)
At the end of your phone call, DO NOT HANG UP. You will be reconnected back to the Butt-In line, where you can direct your calls to your remaining Members of Congress.
Please be sure to speak with all three of your Members of Congress.
The politics...
I'm sitting at MDACC waiting for my consultation with the surgical oncologist I've been waiting to see for what, 4 weeks? My appointment was at noon. It's now after 2 pm. Also waiting to see the same doctor is former Secretary of Commerce Don Evans (served in George Bush's Cabinet, resigned in 2004 with not so stellar legacy). His appointment was for 12:30. I'm passing the time playing solitaire on the iPod. He's trying to get speaking engagements and negotiate oil leases in the Middle East. We both are running late for other appointments now. But the difference between Secretary Evans and Lisa Marie McLaughlin is that when he gets tired of waiting he just tells them he's really important and now he's in to see the doctor and I get to wait here even longer. And listen to his staffer try to reschedule his other appointments by telling people how important he is. At least I don't have to listen to big Don insult Obama and his administration any more. I'm guessing he favors administrations where important people get special favors.
I'm sitting at MDACC waiting for my consultation with the surgical oncologist I've been waiting to see for what, 4 weeks? My appointment was at noon. It's now after 2 pm. Also waiting to see the same doctor is former Secretary of Commerce Don Evans (served in George Bush's Cabinet, resigned in 2004 with not so stellar legacy). His appointment was for 12:30. I'm passing the time playing solitaire on the iPod. He's trying to get speaking engagements and negotiate oil leases in the Middle East. We both are running late for other appointments now. But the difference between Secretary Evans and Lisa Marie McLaughlin is that when he gets tired of waiting he just tells them he's really important and now he's in to see the doctor and I get to wait here even longer. And listen to his staffer try to reschedule his other appointments by telling people how important he is. At least I don't have to listen to big Don insult Obama and his administration any more. I'm guessing he favors administrations where important people get special favors.
Sunday, March 29, 2009
The Best Kind of Bums...
Are these ones:
Thanks to the crew affectionately known as the "Bums on the Run" who came out early on a cold Houston morning and walked/ran 5k to raise colon cancer awareness.
Poor dear Michele got tripped up at the end (some say I shoved her down to beat her to the finish line, I deny it) and was carrying 9-month old Brianna at the time. She fell hard on her right side to avoid injuring Brianna who was on her left. A few hours in the ER later and we get the news that she fractured her elbow, patella (kneecap) and tibia (shinbone). So she's home and only getting around by wheelchair.
I've got chemo round #4 this week. Misery loves company so I think I'll chill out in bed with Michele while I infuse.
Are these ones:
Thanks to the crew affectionately known as the "Bums on the Run" who came out early on a cold Houston morning and walked/ran 5k to raise colon cancer awareness. Poor dear Michele got tripped up at the end (some say I shoved her down to beat her to the finish line, I deny it) and was carrying 9-month old Brianna at the time. She fell hard on her right side to avoid injuring Brianna who was on her left. A few hours in the ER later and we get the news that she fractured her elbow, patella (kneecap) and tibia (shinbone). So she's home and only getting around by wheelchair.
I've got chemo round #4 this week. Misery loves company so I think I'll chill out in bed with Michele while I infuse.
Monday, March 23, 2009
Scan report…
I had a PET scan last week. It’s similar to a CT scan, but they inject you with a radioactive sugar (FDG) before the test. Since cancer cells tend to metabolize sugar faster than other parts of the body, the FDG should go to the cancer areas and those parts should “light up” on the scan. I’ve been waiting with some dread for the results of the scan because if others areas (liver, lungs, etc) lit up with metastases, it would likely mean that I wouldn’t be a candidate for any type of surgery.
Well, I don’t see the doctor again till next week, but I got them to fax me the radiology report and it showed nothing suspicious other than the tumor we already knew about. And that tumor…is smaller than it was last month. Can we all say “Yippee!” together? I’m so relieved.
Here’s the official lingo: “The only FDG-avid abnormality on this scan is the known biopsy-proven peritoneal implant in the Douglas space with maximum SUV of 7.2. When comparison is made with MRI of 02/12/2009, this implant has decreased in size from 3.5 x 2.1 cm to current dimension of 2.5 x 1.4 cm, suggestive of favorable response to chemotherapy.”
Just to clarify something I said on my last post…I was a little shocked by the surgeon who doesn’t take insurance, and it seems unfair that it isn’t open-access to everyone, but having to pay upfront isn’t going to impact our decision-making process. I’ve had many notes and generous offers of assistance for which I am very thankful, but we don’t need any financial help. We’re so fortunate to be well-equipped to fight this battle…physically, mentally, spiritually, financially…we have everything we need right now. But having all of your love and support means the world to us.
I had a PET scan last week. It’s similar to a CT scan, but they inject you with a radioactive sugar (FDG) before the test. Since cancer cells tend to metabolize sugar faster than other parts of the body, the FDG should go to the cancer areas and those parts should “light up” on the scan. I’ve been waiting with some dread for the results of the scan because if others areas (liver, lungs, etc) lit up with metastases, it would likely mean that I wouldn’t be a candidate for any type of surgery.
Well, I don’t see the doctor again till next week, but I got them to fax me the radiology report and it showed nothing suspicious other than the tumor we already knew about. And that tumor…is smaller than it was last month. Can we all say “Yippee!” together? I’m so relieved.
Here’s the official lingo: “The only FDG-avid abnormality on this scan is the known biopsy-proven peritoneal implant in the Douglas space with maximum SUV of 7.2. When comparison is made with MRI of 02/12/2009, this implant has decreased in size from 3.5 x 2.1 cm to current dimension of 2.5 x 1.4 cm, suggestive of favorable response to chemotherapy.”
Just to clarify something I said on my last post…I was a little shocked by the surgeon who doesn’t take insurance, and it seems unfair that it isn’t open-access to everyone, but having to pay upfront isn’t going to impact our decision-making process. I’ve had many notes and generous offers of assistance for which I am very thankful, but we don’t need any financial help. We’re so fortunate to be well-equipped to fight this battle…physically, mentally, spiritually, financially…we have everything we need right now. But having all of your love and support means the world to us.
Sunday, March 22, 2009
Without further delay...
I promised ages ago to put together a slideshow of the family pictures we had taken in January. Finally got my act together since I was ordering myself some big canvas prints from the annual March sale. So thought I would share some favorites, some of which you've seen.
A full-size slideshow can be found on my site.
Made it through another round of chemo this week. Much the same as the last round. Some nausea, some fatigue, but both were manageable. We were supposed to add a new drug this week, but that's been postponed until after my consultation with the surgical oncologist at the end of this month.
Side note, Sean got in touch with a surgeon in Washington DC about this HIPEC surgery that I've been looking into. Not sure where this might be headed, but was amused to hear that beyond being "very selective" about his patients, this particular doctor "doesn't deal with insurance companies". In other words, cash in advance, $25k+. You can submit a claim to your insurance after the fact and hold you breath to see if they pay. Must be nice. I'm going to start deciding that I don't want to deal with fundamental aspects of my profession. I wonder if I can say I "don't deal with contracts" at work. Seems about the same.
Saturday, March 14, 2009
Interviews...
My friend Jaime sent me a questionnaire to do with the kids. The rules are that you can't coach them on the answers. Clearly, my children weren't coached...
Interview with Hayden Pierre Usher McLaughlin, age 6
1. What is something mom always says to you?
"I love you"
2. What makes mom happy?
"When I do things for her"
3. What makes mom sad?
"When I don't listen to her"
4. How does your mom make you laugh?
"Telling jokes"
5. What was your mom like as a child?
"A little girl"
6. How old is your mom?
"36..right mom? is that the true answer mom?"
7. How tall is your mom?
"I don't know...37 feet long...is that right? what's the answer?"
8. What is her favorite thing to do?
"Be on the computer"
9. What does your mom do when you're not around?
"Play with Trevor"
10. If your mom becomes famous, what will it be for?
"A race...like a marathon"
11. What is your mom really good at?
"Typing on the computer"
12. What is your mom not very good at?
"Memory game"
13. What does your mom do for a job?
"Work in her office"
14.What is your mom's favorite food?
"that margherita pizza at Pronto"
15.What makes you proud of your mom?
"when she's on a safe website on the computer"
16. If your mom were a cartoon character, who would she be?
"Like Wilmer [sic] on the Flintstones"
17. What do you and your mom do together?
"Go out together to pick stuff up from places"
18. How are you and your mom the same?
"We have the same face and the same color eyes."
19. How are you and your mom different?
"Because you're a woman and I'm a man"
20. How do you know your mom loves you?
"She kisses me goodnight every night"
21. What does your mom like most about your dad?
"When you two sleep together...that's what she likes"
22. Where is your mom's favorite place to go?
"the drug store."
23. What do you like most about your mom?
"I like you...I just like every part of your body."
24. What do you like least about your mom?
"When you don't play with me."
25. Is there anything else you'd like to share about your mom?
"I love you so much...that's it mom."
Interview with Trevor Jacques Etienne McLaughlin, age 3 1/2
1 . What is something mom always says to you?
2. What makes mom happy?
3. What makes mom sad?
4. How does your mom make you laugh?
5. What was your mom like as a child?
6. How old is your mom?
7. How tall is your mom?
8. What is her favorite thing to do?
9. What does your mom do when you're not around?
10. If your mom becomes famous, what will it be for?
11. What is your mom really good at?
12. What is your mom not very good at?
13. What does your mom do for a job?
14.What is your mom's favorite food?
15.What makes you proud of your mom?
16. If your mom were a cartoon character, who would she be?
17. What do you and your mom do together?
18. How are you and your mom the same?
19. How are you and your mom different?
20. How do you know your mom loves you?
21. What does your mom like most about your dad?
22. Where is your mom's favorite place to go?
23. What do you like most about your mom?
24. What do you like least about your mom?
25. Is there anything else you'd like to share about your mom?
My friend Jaime sent me a questionnaire to do with the kids. The rules are that you can't coach them on the answers. Clearly, my children weren't coached...
Interview with Hayden Pierre Usher McLaughlin, age 6
1. What is something mom always says to you?"I love you"
2. What makes mom happy?
"When I do things for her"
3. What makes mom sad?
"When I don't listen to her"
4. How does your mom make you laugh?
"Telling jokes"
5. What was your mom like as a child?
"A little girl"
6. How old is your mom?
"36..right mom? is that the true answer mom?"
7. How tall is your mom?
"I don't know...37 feet long...is that right? what's the answer?"
8. What is her favorite thing to do?
"Be on the computer"
9. What does your mom do when you're not around?
"Play with Trevor"
10. If your mom becomes famous, what will it be for?
"A race...like a marathon"
11. What is your mom really good at?
"Typing on the computer"
12. What is your mom not very good at?
"Memory game"
13. What does your mom do for a job?
"Work in her office"
14.What is your mom's favorite food?
"that margherita pizza at Pronto"
15.What makes you proud of your mom?
"when she's on a safe website on the computer"
16. If your mom were a cartoon character, who would she be?
"Like Wilmer [sic] on the Flintstones"
17. What do you and your mom do together?
"Go out together to pick stuff up from places"
18. How are you and your mom the same?
"We have the same face and the same color eyes."
19. How are you and your mom different?
"Because you're a woman and I'm a man"
20. How do you know your mom loves you?
"She kisses me goodnight every night"
21. What does your mom like most about your dad?
"When you two sleep together...that's what she likes"
22. Where is your mom's favorite place to go?
"the drug store."
23. What do you like most about your mom?
"I like you...I just like every part of your body."
24. What do you like least about your mom?
"When you don't play with me."
25. Is there anything else you'd like to share about your mom?
"I love you so much...that's it mom."
Interview with Trevor Jacques Etienne McLaughlin, age 3 1/2
1 . What is something mom always says to you?"Tell me a story"
2. What makes mom happy?
"I say I love you"
3. What makes mom sad?
"That you don't love me"
4. How does your mom make you laugh?
"You tell jokes to me"
5. What was your mom like as a child?
"you liked to play with me and I loved you and you put stamps on me"
6. How old is your mom?
"uh...6"
7. How tall is your mom?
"like this big (arms stretched wide)"
8. What is her favorite thing to do?
"play with me"
9. What does your mom do when you're not around?
"you just kinda stay here and sometimes go to work and sometimes your nurse comes"
10. If your mom becomes famous, what will it be for?
"Cause you're Lisa Marie!"
11. What is your mom really good at?
"Playing iPod"
12. What is your mom not very good at?
"you're not good at bowling...I'm good at bowling"
13. What does your mom do for a job?
"do it on the computer"
14.What is your mom's favorite food?
"apple...warm apple"
15.What makes you proud of your mom?
"I love you"
16. If your mom were a cartoon character, who would she be?
"You would be Handy Manny"
17. What do you and your mom do together?
"Dance to music"
18. How are you and your mom the same?
"I'm big as you"
19. How are you and your mom different?
"We're different names"
20. How do you know your mom loves you?
"Cause you do...'cause you play with me"
21. What does your mom like most about your dad?
"Bugs...ladybugs"
22. Where is your mom's favorite place to go?
"Pronto"
23. What do you like most about your mom?
"I play with you."
24. What do you like least about your mom?
"That I don't play with you."
25. Is there anything else you'd like to share about your mom?
"That I love you"
Thursday, March 12, 2009
Must find joy in the little things...
Like the Nu-Hope 8" Cool Comfort Support Belt with a 2 1/2" opening (pictured above). Soon to be delivered to my home for the low, low co-pay of $3.06. Good insurance: several hundred dollars a month. Finding a hernia support belt with a hole cutout? Priceless. Thanks for everyone's help and suggestions.
Like the Nu-Hope 8" Cool Comfort Support Belt with a 2 1/2" opening (pictured above). Soon to be delivered to my home for the low, low co-pay of $3.06. Good insurance: several hundred dollars a month. Finding a hernia support belt with a hole cutout? Priceless. Thanks for everyone's help and suggestions.Wednesday, March 11, 2009
Trying so so so hard…
Not to whine and complain. Trying really, really, really hard. ‘Cause, let me tell you, with a 3 year old and a 6 year old in the house, I hear a lot of whining and complaining and it isn’t pleasant to the ears.
So the cancer, I’m dealing with it. It isn’t fun, surely we can agree on that, but what good will complaining do? Chemo last week was better. I got some new drugs to manage the nausea and vomiting and actually made it through the whole cycle without any food coming back up. Progress! Of course the steroids which are helping with the nausea are making me a little twitchy and aren’t particularly conducive to restful sleep. But I think Sean enjoys when I poke him in the back in the middle of the night to say “I can’t sleep” (seriously, the man deserves sainthood for putting up with me).
The kids are good, the chemo is manageable, my days are so much more good than bad…so what’s the problem? Well I seem to have torn open my abdominal muscle around my surgery site (I had about a 10 inch vertical incision in the middle of my abdomen). So I have a big fat abdominal hernia. Which makes it hurt to sit, stand, walk, breathe…you get the idea. Of course, I can’t have surgery because that would interrupt my chemo for ~10 weeks which isn’t a good idea. And they make lots of abdominal binders for hernias, but none that fit around a colostomy stoma. So I walk around like an idiot with my hands pressed against my stomach trying to keep my intestines from poking out of the hole in my abdominal muscle. Sound fun?
Last night I was having a coughing fit (at 11:30 pm, see note above about Sean needing sainthood) and desperately trying to press on the hernia so the coughing didn’t hurt so much. There may have been some profanity uttered, I can’t be certain. Finally, a light bulb went on over my head…Codeine…codeine is a cough suppressant…and a painkiller. Note to friends…never throw away prescription painkillers. Two vicodin and thirty minutes later, both Sean and I were sleeping peacefully. Obviously this strategy doesn’t work during daylight hours, but at least now I’m not whining about this blasted hernia 24 hours a day. Sixteen hours a day is plenty.
Not to whine and complain. Trying really, really, really hard. ‘Cause, let me tell you, with a 3 year old and a 6 year old in the house, I hear a lot of whining and complaining and it isn’t pleasant to the ears.
So the cancer, I’m dealing with it. It isn’t fun, surely we can agree on that, but what good will complaining do? Chemo last week was better. I got some new drugs to manage the nausea and vomiting and actually made it through the whole cycle without any food coming back up. Progress! Of course the steroids which are helping with the nausea are making me a little twitchy and aren’t particularly conducive to restful sleep. But I think Sean enjoys when I poke him in the back in the middle of the night to say “I can’t sleep” (seriously, the man deserves sainthood for putting up with me).
The kids are good, the chemo is manageable, my days are so much more good than bad…so what’s the problem? Well I seem to have torn open my abdominal muscle around my surgery site (I had about a 10 inch vertical incision in the middle of my abdomen). So I have a big fat abdominal hernia. Which makes it hurt to sit, stand, walk, breathe…you get the idea. Of course, I can’t have surgery because that would interrupt my chemo for ~10 weeks which isn’t a good idea. And they make lots of abdominal binders for hernias, but none that fit around a colostomy stoma. So I walk around like an idiot with my hands pressed against my stomach trying to keep my intestines from poking out of the hole in my abdominal muscle. Sound fun?
Last night I was having a coughing fit (at 11:30 pm, see note above about Sean needing sainthood) and desperately trying to press on the hernia so the coughing didn’t hurt so much. There may have been some profanity uttered, I can’t be certain. Finally, a light bulb went on over my head…Codeine…codeine is a cough suppressant…and a painkiller. Note to friends…never throw away prescription painkillers. Two vicodin and thirty minutes later, both Sean and I were sleeping peacefully. Obviously this strategy doesn’t work during daylight hours, but at least now I’m not whining about this blasted hernia 24 hours a day. Sixteen hours a day is plenty.
Tuesday, March 10, 2009
Saturday, March 07, 2009
Correction...
Apparently, the stats quoted in my post about Dress in Blue day were inaccurate. Shocking...not everything you read on the internet is true, even if it comes from fairly reputable websites.
According to the person who manages my colon cancer list on ACOR.org (fantastic source, by the way)...
"The American Cancer Society Facts and Figures reported 40,480 deaths from breast cancer in 2008 and 49,960 from colorectal cancer.
The Kaiser Foundation Global Health Facts reported 22,000 deaths from AIDS in the United States in 2007. I cannot find a number for 2008, but assume that it is reasonably near that number.
40,480 plus 22,000 equals 62.480 -- considerably more than the 49,960 US colorectal cancer deaths.
Worldwide the numbers are bigger: AIDS will kill at least 2,000,000 people according to the World Health Organization, breast cancer 519,000, and colorectal cancer 639,000
Nearly 50,000 deaths from colon and rectal cancer is scary enough. I think we need to be very careful in making comparisons to other diseases to support colorectal cancer awareness."
Apparently, the stats quoted in my post about Dress in Blue day were inaccurate. Shocking...not everything you read on the internet is true, even if it comes from fairly reputable websites.
According to the person who manages my colon cancer list on ACOR.org (fantastic source, by the way)...
"The American Cancer Society Facts and Figures reported 40,480 deaths from breast cancer in 2008 and 49,960 from colorectal cancer.
The Kaiser Foundation Global Health Facts reported 22,000 deaths from AIDS in the United States in 2007. I cannot find a number for 2008, but assume that it is reasonably near that number.
40,480 plus 22,000 equals 62.480 -- considerably more than the 49,960 US colorectal cancer deaths.
Worldwide the numbers are bigger: AIDS will kill at least 2,000,000 people according to the World Health Organization, breast cancer 519,000, and colorectal cancer 639,000
Nearly 50,000 deaths from colon and rectal cancer is scary enough. I think we need to be very careful in making comparisons to other diseases to support colorectal cancer awareness."
Friday, March 06, 2009
Dress in Blue Day
When is Dress in Blue Day?
It is celebrated on the first Friday of March. In 2009, Dress in Blue Day will be held on Friday, March 6th.
What is the purpose of Dress in Blue Day?
The purpose of Dress in Blue Day is to promote awareness about colorectal cancer and encourage people to get screened.
Why do we need to raise awareness of Colorectal Cancer?
Because: Colorectal cancer is the #2 cause of death in the U.S.
This year in the United States, colorectal cancer will kill as many people as breast cancer and AIDS combined.
Over 150,000 Americans will be diagnosed with colorectal cancer each year.
Colorectal cancer often has no symptom at all until it’s at an advanced stage.
Colorectal cancer is 90% preventable when detected early.
You can reduce your risk through regular screening.
Beginning at age 50 (or earlier if you have a family history), everyone should be screened for colorectal cancer.
How can I/my organization participate in Dress in Blue Day?
Individuals, businesses and community groups are all encouraged to participate in Dress in Blue Day, by encouraging friends, family, co-workers and other members of their organization to wear blue. By getting people to talk about Colorectal Cancer, and learning about ways to prevent this # 2 cause of cancer death in the U.S., you could save a life -- maybe even your own.
What is the history behind Dress in Blue Day?
Dress in Blue Day was started in March of 2006 by a Colon Cancer Alliance volunteer, Anita Mitchell. In an effort to raise awareness about the importance of screening, Anita worked with her children's local k-8 Catholic school and parents to coordinate a recognition day. On that day, students, who normally wore a uniform to school, were allowed to wear blue if they donated a dollar to colon cancer research. To promote the event, Anita sent a notice to each of the 500 families at the school, letting them know about the special day and included some simple screening guidelines for the parents. When the children came to school on Dress in Blue Day they were each given a blue ribbon, signifying their participation.
When is Dress in Blue Day?
It is celebrated on the first Friday of March. In 2009, Dress in Blue Day will be held on Friday, March 6th.
What is the purpose of Dress in Blue Day?
The purpose of Dress in Blue Day is to promote awareness about colorectal cancer and encourage people to get screened.
Why do we need to raise awareness of Colorectal Cancer?
Because: Colorectal cancer is the #2 cause of death in the U.S.
This year in the United States, colorectal cancer will kill as many people as breast cancer and AIDS combined.
Over 150,000 Americans will be diagnosed with colorectal cancer each year.
Colorectal cancer often has no symptom at all until it’s at an advanced stage.
Colorectal cancer is 90% preventable when detected early.
You can reduce your risk through regular screening.
Beginning at age 50 (or earlier if you have a family history), everyone should be screened for colorectal cancer.
How can I/my organization participate in Dress in Blue Day?
Individuals, businesses and community groups are all encouraged to participate in Dress in Blue Day, by encouraging friends, family, co-workers and other members of their organization to wear blue. By getting people to talk about Colorectal Cancer, and learning about ways to prevent this # 2 cause of cancer death in the U.S., you could save a life -- maybe even your own.
What is the history behind Dress in Blue Day?
Dress in Blue Day was started in March of 2006 by a Colon Cancer Alliance volunteer, Anita Mitchell. In an effort to raise awareness about the importance of screening, Anita worked with her children's local k-8 Catholic school and parents to coordinate a recognition day. On that day, students, who normally wore a uniform to school, were allowed to wear blue if they donated a dollar to colon cancer research. To promote the event, Anita sent a notice to each of the 500 families at the school, letting them know about the special day and included some simple screening guidelines for the parents. When the children came to school on Dress in Blue Day they were each given a blue ribbon, signifying their participation.
Friday, February 27, 2009
Sorry internet...
I fear I got your hopes up a bit. But it isn't a fibroid or a cyst or even a wad on undigested bubble gum that I swallowed when I was 5...it's a tumor...a nice big metastasis. The radiologist I saw today (thanks to my fabulous connections who get me in for next day appointments - Love ya' Jason) says I should see a gynecological surgical oncologist because he'd want the whole mess cut out - tumor, uterus, ovaries. I'm with him. Menopause at 36, that'll be a hoot. At least Sean will never have to go to the store for a box of tampons again.
I fear I got your hopes up a bit. But it isn't a fibroid or a cyst or even a wad on undigested bubble gum that I swallowed when I was 5...it's a tumor...a nice big metastasis. The radiologist I saw today (thanks to my fabulous connections who get me in for next day appointments - Love ya' Jason) says I should see a gynecological surgical oncologist because he'd want the whole mess cut out - tumor, uterus, ovaries. I'm with him. Menopause at 36, that'll be a hoot. At least Sean will never have to go to the store for a box of tampons again.
Thursday, February 26, 2009
Still Standing...
And the winner of chemo round 1...it's a draw. Chemo gave me a pretty good beatdown on days 3 and 4, but I bounced back and am feeling relatively strong and ready to go into the next round. The most discouraging moment was on day 3 when I was feeling pretty crummy and went to have my pump disconnected and the nurse said "It gets worse every time". Thanks pal, I needed something to look forward to.
My next round is now slated to start on Wednesday, March 4th if my bloodwork looks good. In the meantime, I'm busy plotting and strategizing on how to kick cancer's ass.
I'm working on getting some more scans done to look inside and try to figure out what's what in there. Cysts, hemangiomas, tumors, fibroids...the possibilities are endless for all these "lesions" and "densities". My most recent ultrasound has led the team at MDACC to conclude that the junk (I like to wow you with the official medical terminology) on my left ovary is a cyst. Just a big honkin' cyst. Not a separate malignant implant. So that's good news. Less cancer is always better, right?
We have some potentially new hypotheses on the peritoneal mass. I'm hoping that another ultrasound and perhaps a biopsy will clarify things. Maybe, just maybe, the mass is somthing other than a metastasis of my cancer. I'm really not wanting to get my hopes up, but that could be huge. So we pray for the best and prepare for the worst. Speaking of praying, let's pray that they can get to the mass to biopsy it without "rectal laparoscopy", 'cuz just between you and me, that doesn't sound fun at all.
In the meantime, I'm trying to get a consulation with a surgical oncologist on a procedure called HIPEC. My internet friends with colon cancer say it's all the rage. Actually, it's a pretty specialized surgery that very few people do, but it has had some success with colon cancers with peritoneal metastasis.
They basically slice you open, cut out all the visible cancer or suspected cancer in your abdomen, removing everything suspicious (might wake up without ovaries or a uterus, but hey, I'm through with those anyways). Then, while they've still got you open, they pump your abdomen full of HOT chemotherapy solution and slosh it around for a while. Then they close you up and you feel really, really crummy for a while. Then you live till you're 95 and your grandchildren are sick of you. I made up that part at the end. Really, the curative numbers are still not high, but better than chemotherapy alone.
So that's what's going on. Nothing to get excited about. Who knows if I'd even be a candidate for the surgery. And I have to go through my oncologist to get to the one surgical oncologist at MDACC who does this procedure. And who knows, if the peritoneal mass isn't malignant, I wouldn't even need to think about it...but I'm trying to keep all my irons in the fire.
And the winner of chemo round 1...it's a draw. Chemo gave me a pretty good beatdown on days 3 and 4, but I bounced back and am feeling relatively strong and ready to go into the next round. The most discouraging moment was on day 3 when I was feeling pretty crummy and went to have my pump disconnected and the nurse said "It gets worse every time". Thanks pal, I needed something to look forward to.
My next round is now slated to start on Wednesday, March 4th if my bloodwork looks good. In the meantime, I'm busy plotting and strategizing on how to kick cancer's ass.
I'm working on getting some more scans done to look inside and try to figure out what's what in there. Cysts, hemangiomas, tumors, fibroids...the possibilities are endless for all these "lesions" and "densities". My most recent ultrasound has led the team at MDACC to conclude that the junk (I like to wow you with the official medical terminology) on my left ovary is a cyst. Just a big honkin' cyst. Not a separate malignant implant. So that's good news. Less cancer is always better, right?
We have some potentially new hypotheses on the peritoneal mass. I'm hoping that another ultrasound and perhaps a biopsy will clarify things. Maybe, just maybe, the mass is somthing other than a metastasis of my cancer. I'm really not wanting to get my hopes up, but that could be huge. So we pray for the best and prepare for the worst. Speaking of praying, let's pray that they can get to the mass to biopsy it without "rectal laparoscopy", 'cuz just between you and me, that doesn't sound fun at all.
In the meantime, I'm trying to get a consulation with a surgical oncologist on a procedure called HIPEC. My internet friends with colon cancer say it's all the rage. Actually, it's a pretty specialized surgery that very few people do, but it has had some success with colon cancers with peritoneal metastasis.
They basically slice you open, cut out all the visible cancer or suspected cancer in your abdomen, removing everything suspicious (might wake up without ovaries or a uterus, but hey, I'm through with those anyways). Then, while they've still got you open, they pump your abdomen full of HOT chemotherapy solution and slosh it around for a while. Then they close you up and you feel really, really crummy for a while. Then you live till you're 95 and your grandchildren are sick of you. I made up that part at the end. Really, the curative numbers are still not high, but better than chemotherapy alone.
So that's what's going on. Nothing to get excited about. Who knows if I'd even be a candidate for the surgery. And I have to go through my oncologist to get to the one surgical oncologist at MDACC who does this procedure. And who knows, if the peritoneal mass isn't malignant, I wouldn't even need to think about it...but I'm trying to keep all my irons in the fire.
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