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!

Hi Ho, Hi Ho...

It's off to work I go. Tomorrow. For the first time since December 19th.

I'm only 5 weeks out from my surgery and my surgeon recommended a 6-week recovery, but it seems that the company that manages our short term disability can't do the math quite right. I'm feeling okay about it though, just a little concerned about my energy level. Oh, and the fact that none of my clothes probably fit. But I'll deal with that in the morning.

Busy week overall. Meeting with the oncologist at Baylor tomorrow to see about the clinical trial. Then Tuesday I have a follow-up appointment with my surgeon. Thursday we're at MD Anderson all day: anesthesia assessment, pre-op bloodwork, MRI. Then Friday is outpatient surgery to put in my chemo port.

Somehow, I'm still hoping to make it to Hayden's birthday party on Friday afternoon. I told him I might not make it to the party and he said, "It's OK Mom, they'll have Wii." Good to know I can be completely replaced by a video game.

Hey y'all...

Think my munchkin is ready to audition for HeeHaw?
Seriously, you think he's going to be mad when his girlfriend finds this picture on the internet in 15 years?

Remember when...

I didn't post anything on this blog except self-indulgent pictures of my children? Ahhh...the good old days. We had family pictures taken last week by our very brilliant dear friend Mackenzie. Thought I should share at least one...

See now there, I don't look a bit sick, do I? So you can stop imagining me bald and bed-ridden.

I've never liked CATs...

Always been a dog person. Now I know why. The distasteful CAT scan from last week which produced the not-so-fun allergic reaction also bought me a call from the oncologist at MD Anderson today.

The scan shows some "densities" within my liver and "nodular areas" within my pelvis. She said the nodules in the pelvis could be artifacts from my recent surgery. The liver? She's setting up an MRI to learn more. If it's malignant, that puts me in stage 4. Four out of four...like three out of four just wasn't good enough. Of course, we don't know anything yet. Because the CAT scan isn't definitive. So now we just wait and worry.

On the bright side (must have a bright side, must have a bright side, she repeats to herself)...if I'm stage 4 I don't have to mess around with this clinical trial. All the good drugs are approved for people with stage 4. Because they've all been tested on people with stage 4 cancer. Because when you're down to an 8% 5-year survival rate, you can throw out all the rules and go at it guns a-blazin'. So I might get that cetuximab and make my insurance company pay for it after all. So there!

By the way, I love it that so many of you are concerned and call to check on me. And I'm happy to talk, tell you about the kids, find out about your life. But I'm kind of over the cancer talk. I'll really strive to post everything I know out here, brutally honest for the all the world to see. But then I'm spent. I can't go over it again and again. OK?

Changing course?

After our meeting with the oncologist at MD Anderson last week, I've been doing more thinking and research. The only chemotherapy they've offered me is FOLFOX, a combination of 3 drugs that are the approved standard of care for Stage III colon cancer. That lovely standard of care that produces a 44% 5-year survival rate. I asked about some other, newer drugs that I've read about that are molecularly targeted therapies. Specifically, there's a drug called cetuximab, which is approved to treat stage 4 colon cancer (once it's metasticized to distant organs). For my technically-oriented friends, I put a little more info on cetuximab below.

So what does this mean for me? Well, there's a clinical trial going on at hospitals across the country to compare results between FOLFOX alone and FOLFOX+cetuximab in stage 3 colon cancer patients. The trial isn't being run at MD Anderson, but Baylor's cancer center here in Houston is a trial site. So I've been talking to them. There's a pretty narrow window for enrollment and a specific criteria. I have to be less than 8 weeks post-op and I'm 3 1/2 weeks right now.

So what do I want to happen?

• I want to get accepted into the trial.
• I want my insurance to pay for my treatment in the trial (or at least the vast majority of it). In general, they don't cover clinical trials, but hopefully they'd cover all the costs related to the standard chemo and we might have to pick up the costs to administer the cetuximab (the drug itself is free since it's a trial).
• I want to win the coin flip. Trial participants get randomly assigned to one of the two study groups. So I could enroll and it's still 50-50 that I'd just get the standard chemo. And I really, really, really want the cetuximab.
• I want this all to happen really fast.

I know this may sound flip-floppy. I really wanted to get in to see an oncologist at MD Anderson, but when I did, they only offered me the same chemo I could get anywhere else. And honestly, I know that's all they have approved, but I'd sure like something more effective. I just don't like the odds. Maybe my cancer would respond really well to that treatment regimen. But maybe not. In the majority of people, it doesn't work. I just want something better. From everything I read I honestly believe that cetuximab will be approved as part of the standard of care for stage 3 colon cancer within the next 10 years. But I can't wait that long. So send all your positive energy, thoughts, and prayers and we'll see if we can't stack the deck in our favor a little bit.

From The American Cancer Society's Complete Guide to Colorectal Cancer...
Cetuximab is what's called a monoclonal antibody and it fits, like a key into a lock, into epidermal growth factor receptors (EGFRs) on the surface of a cancer cell. When it fills these receptors, the epidermal growth factor has no place to attach. This makes the EGFR unable to activate the cell and it stops the cancer cell from growing. Unlike chemo, that just goes and kills everything in sight, this type of therapy is more specific and targeted to the cancer cells. Cetuximab alone and in combination with other drugs has been repeatedly shown to shrink tumors in patients with advanced colorectal cancer whose tumors grew despite standard chemo.

One down, one to go...

Trevor had a little mishap today. He leaned against the chair at the computer desk, it swiveled, he lost his balance and hit his face against the desk. So those wiggly teeth that we were hoping to preserve...
Well, #1 has bid adeiu to his mouth and #2 is likely to follow sooner rather than later.

Trevor's first question (between tears)..."Will the tooth fairy come tonight and leave money under my pillow?" Yes indeedy, so glad he's a glass half full kind of kid. He's not grimacing in pain here, just trying to show me all his teeth.

And by the way, in case you have a spare tooth lying around, apparently they make a handy stylus for the IPOD touch.

How relieved am I that we had our family pictures taken yesterday?

A non-post

OK, so I said I'd post today, but I'm not up to it. CT scan itself went OK (if you disregard having to drink 30 oz. of barium "smoothie). But I must be allergic to the iodine contrast, because a few hours later my whole torso was bright red and incredibly itchy. And I've got a fever which adds chills and aches to my list of reasons that computer time isn't on my list tonight.

Let's just hope tomorrow is better because a certain handsome boy is turning 6 tomorrow and I want to help him have a great day.

A plan...

So we met with the oncologist today, it was a long day and I'm very tired. I didn't realize that it wasn't just a meeting with the doctor, but paperwork first, meeting with the P.A., meeting with the oncologist, the off for bloodwork, then x-rays, then a CT scan. They were backed up in CT and it looked like I might not get in till 8 pm so I bailed out and will go back tomorrow for that. Ah, the luxury of living 2 miles away. Given my exhaustion, I'll just give the highlights and maybe elaborate tomorrow.

They're scheduling me to have a port put in, probably in about 2 weeks. In the meantime, I'll be having a scope done on the remaining portion of my colon to see if there are any other polyps or tumors (they couldn't scope past the tumor before). The CT will give them more info about the lesions on my liver and make certain there isn't any metastasis to my lungs or other organs. Assuming the liver, lungs, etc. are clear, I stay classified as Stage IIIC and start my chemo, probably in early February.

I'll be doing chemo every two weeks for 6 months, so twelve cycles total (I know my mathematically challenged friends appreciate that kind of help, right?). I'll go into MD Anderson for the first day of the infusion, then come home with a pump that will continue chemo for another 46 hours at home. Then I bring the pump back in and I'm done till the next cycle. Except for the side effects, which can fill your days with all kinds of fun between cycles. The chemo regimen I'm doing is called FOLFOX. I'll elaborate more on the actual drugs and side effects tomorrow. For today, I've become quite aware that although I'm feeling much less pain these days, I'm so prone to exhaustion from the smallest exertion. Of course, it didn't help that I stayed up till 3 am last night reading a trashy Twilight novel that Kathryn gave me. But regardless of who's to blame (either cancer or Kathryn, definitely not me), sleep is calling.

Trevor says...

"I love you to the car wash and to the bayou and to the ground and to the street and to the clouds and to outer space and to the moon and to Jupiter and back to the house and back to the bayou and back to outer space and that's it."

And that's plenty if you ask me.

Sweet...

My friends Buck and Kerri sent a cookie bouquet the other day. Didn't know you were allowed to write such PG-13 messages on cookies.
Sweet nonetheless.

Hayden has been gone to stay with Renee and Marissa since Saturday morning. Since Monday is a school holiday, he won't be back till tomorrow. It's so much quieter without him. Trevor says he misses Hayden, but I think he's actually enjoying being the oldest for a change. As usual, Hayden doesn't seem to miss us a bit. We had a brief phone call last night, but I'd guess that was more Renee's idea than his.

Juliette's top molars have broken through. The bottom ones are still working, but thankfully the last few nights have been a little more peaceful. Hope I'm not jinxing myself by saying that out loud.

I had visitors Friday and Saturday and I think I'm still wiped out from it. I feel pretty good right now, and have even gone a few whole days Vicodin-free, but I tire really easily. Hayden's birthday is Friday and ages ago I signed up to read in his classroom in the morning. So I'm trying to gather my energy to actually do it. It's like Pee-Wee's big adventure, except without Large Marge hopefully.

Briefly...

Finally confirmed my appointment with the new oncologist. Seeing her next Wednesday afternoon. And it looks like she's "in-network" on my insurance plan. Could I be so lucky?

In other news, Juliette slept through the night last night for the first time in forever (well, not forever, she slept through the night from 4 weeks - 1 year and then something went awry about a month ago).

Hayden has seen his favorite preschool girlfriend 3 days in a row and he's beside himself. He gets all, "Mom, leave me alone" when I try to tease him about it, but then he says "I'm seeing her again tomorrow" and he can't hide the delight on his face.

Trevor has announced that after he's done with preschool, he doesn't want to go to kindergarten. "Why?", Sean asks. "I don't know how to stay on green," Trevor replies. Hayden's teacher has this red-yellow-green conduct system and Hayden has proudly stayed on green the whole school year so far. Trevor is already doubtful about his ability to behave so well. Honestly, I've got a few doubts myself (especially if he and Logan end up in the same class), but I think we can live with a few wild yellow or red days.