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.

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.

Wednesday, February 18, 2009

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.

Tuesday, February 17, 2009

Raincheck...

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

Monday, February 16, 2009

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.

Saturday, February 14, 2009

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.

Friday, February 13, 2009

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.

Thursday, February 12, 2009

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.

Tuesday, February 10, 2009

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!

Sunday, February 08, 2009

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.

Monday, February 02, 2009

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?

Sunday, February 01, 2009

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.