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.

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.

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.

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.

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?

"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"

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.

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.

Eleven...

That's the number of steps Juliette took last night in her walk across the living room. And the video camera? Nowhere to be found.

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."

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.

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.

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.

Chemo day 1

Not so bad overall. Got my bolus doses of oxaliplatin and 5-FU over about a 4 1/2 hour period along with some meds to manage the side effects. Lots of lines and bags. Slept a bit early on from one of the meds (some anti-anxiety stuff I think). Biggest complaints: no wireless or cell phone service and Sean somehow broke my laptop about 20 min into "Love Actually". Since I didn't have a contingency plan, this left me with nothing to do except the needlepoint bookmark kit I found in the lobby. So next time I'll be better prepared with low tech entertainment like books and magazines.

So now I'm infusing the 5-FU (who besides me gets a chuckle from the name?) at home for another 46 hours. Then I go back to MDACC on Friday afternoon to get disconnected. So really, everything is better than expected so far. I hope the nausea stays manageable even off the IV meds. The nurse said the fatigue from the oxaliplatin typically kicks in about 24 hours after infusion. So Trevor and I have some nap appointments scheduled. I think we're up to the task.

Raincheck...

Did we say chemo today? Oh sorry, the schedule didn't work out. Come back tomorrow.

Now the fun begins...

Met with the oncologist today. She had the results from the MRI, which seem to confirm metastatic disease in my pelvic area and perhaps on one of my ovaries. Which solidifies my staging at Stage 4. Which unfortunately means the path ahead is an attempt to prolong my survival, rather than cure the disease. She said that with chemo, mean survival is 24-30 months. Without chemo, maybe 6-12 months. So clearly, we're proceeding with the chemo. Which starts...tomorrow.

She said that 60-70% of patients show response to the chemo. The plan is to hammer away with FOLFOX + Avastin (one of the newer biologically targeted drugs) for two months and then do another CT scan to see if the tumors are larger, smaller, or the same. Then we reassess whether to continue with the same drugs or change course. If the metastatic disease shows enough response and is localized enough, perhaps someday they could attempt a surgical resection. That is really my greatest hope at this point. But first we have to go at things with the chemo because we really can't pinpoint all the places this disease has taken a foothold.

The chemo schedule is about the same, 3 days of infusion every two weeks. The only difference is that there is no defined endpoint, no six months...just as long as it works, or as long as the benefits are greater than the side effects.

What do I want? What are our prayers? I want the chemo and Avastin to work. I pray that they are effective in seeking out and destroying the disease in my body. I'm hopeful that I'm able to tolerate the drugs without significant side effects that would cause us to have to back off or discontinue treatment. And as much as anything, I want to be able to enjoy every day with my precious family and friends and not feel so sick that I can't cherish the gifts that I have in each day.

I'm sure you'll all understand if I can't muster the energy to take a stab at something lighthearted tonight. My heart really feels a little heavy today.

Equal Opportunity Embarrassment...

Just so you know, I'm a big fan of Valentine's day. Specifically I enjoy sending out Valentine's pictures of the kids. Like Hayden's back in 2004...
And Trevor in 2007...

Trevor decided to don the cupid gear again this year in hopes of being the cover boy on yet another Valentine...

But he was overtaken by Juliette, who was the only one who could fit in the gold diaper this year...

I did manage a group shot for the other side of the Valentine...

Wishing you and yours much love on this day and always.

Out of surgery...

So far so good. Lots of itching with the pre-op antibiotics. Surgeon couldn't place port in my jugular as preferred due to scar tissue (???). So he went subclavian which has higher risk of pinching and blood clots. He puts 95% in the jugular. You had to know I'd fall in the 5%...let's just hope that falling in the minority stats holds out for me.

Exhausted...

I made it through my marathon day at MD Anderson (which will henceforth be referred to as MDACC). Started at 7:15 am, finished around 7 pm. I need to be back tomorrow at 7:15 am. The MRI was the worst part, but it truly wasn't that bad. Just 2 straight hours of lying flat on my back on a hard surface in a ridiculously loud machine. I think the fact that I had absolutely nothing else to distract me made me focus on the discomfort in my back obsessively. Oh, and the itch on my nose I was dying to scratch for 1.5 hours.

I felt good meeting with the doctor for the port surgery. Despite the fact that the thing gets threaded into my jugular vein. That just sounds scary, doesn't it?. This guy has done 5000 ports or something ridiculous and has a really low record of complications. So hopefully no collapsed lung this time, right?

The only downside is that I can't pick Juliette (or the boys) up for 3 weeks while my port heals. So I have to teach Hayden how to pick her up out of her crib or something. As for how to get her into the high chair...I dunno...guess she'll have to eat on the floor if I'm the only one home. The dogs should enjoy that arrangement.

Oh, Sean had to leave me on my own at MDACC for a few hours today because I sent him to take Trevor to the pediatrician. He's been running a fever since Monday night. It's nothing...just pneumonia...my baby has pneumonia!!! Probably caught it from me last week. Thanks mom. He's taking it like a champ though.

No Soup for You...

We met with the oncologist at Baylor yesterday about enrolling in the clinical trial. First, I must say, that doctors just can't win. When I go to a doctor's office and it's crowded and I wait for an hour, I'm really frustrated. This office was empty, they brought me into an exam room, took my vitals, and the doctor came in immediately. And I found myself wondering, "Why isn't he busier? Maybe he's not a good doctor."

But I generally liked the guy. He took my medical history, went through the basics of the trial, and everything was looking good until we handed over the report from my last CT scan. There was a little excerpt that seemed to stop him in his tracks. Something like "There is a nodular area of soft tissue density in the prerectal space...measuring 3.3 x 2.1 cm. This is probably a focus of peritoneal disease...There is some increased density along the superior aspect of the left ovary that could be part of the ovary or could be a separate implant."

So...the trial is restricted to Stage 3 patients. To qualify for the trial, you have to be enrolled within 8 weeks of your surgery. This oncologist said there's no way to prove that I'm NOT stage 4 in that time frame. He said the MRI this week won't really give a definitive answer. The only way you can really tell if these densities and nodules are cancer is with a biopsy or surgery. He did contact the principal researcher on the trial to check and they confirmed that he can't enroll me with this most recent scan data. But it was nice that he called me personally to follow-up within 24 hours. Wish I got that kind of treatment everywhere.

So that's that. No clinical trial. At least not a clinical trial for Stage 3 colon cancer. If I'm stage 4 there's trials aplenty to consider.

Everyone wants an update on work. Work is fine...better than fine...good. It actually feels good to have a little more routine and put on some makeup and wear something other than sweatpants. And everyone is super-supportive and nobody is expecting me to push myself beyond my capabilities. So really, it's all good.

Speaking of all good, I would have gotten cancer years ago if I'd have known I'd get all sorts of loot. Actually, they tell me that I did get cancer years ago, so why the delay on the loot? Flowers, cards, gift cards, food...it just keeps coming. But you people seem to know me well enough not to send herbal tea and exercise books. Here's a sampling of things that have arrived.

Nothing says "fight cancer" like 10 lbs. of Jelly Belly sour mix...
Except perhaps 5+ lbs. of Twizzlers...

And if you're looking for entertainment, you'd probably find these gems on a list of the top 20 worst movies of the 1980s...

Of course, this one is practically a work of art. Must have swept the Academy Awards in 1985. "My tapes...my Julio Iglesias tapes...Ruined!!!" Classic, really.

Oh, and if you didn't get your fill from the 10 lbs of Jelly Bellys above, perhaps a skunk or vomit flavored jelly bean would tickle your fancy? Nothing fights chemo-nausea like rotten egg and moldy cheese jelly beans.

And finally, the piece de resistance...sending me positive E=mc^2 energy is my new Albert Einstein Chia Pet. Ch-ch-ch-chia cures ca-ca-ca-cancer!