Being a Working Mother is a True Extreme Sport

2011-06-08T00:01:00.031-05:00

Happy Birthday Trevor!

Dear Trevor,

I know you’ve been waiting for today to come, anxiously anticipating being SIX years old. Seeing you cross this threshold from preschooler to school-age boy is exciting for me too. You’ve grown so much this past year; I can barely believe the difference between five and six. Last year you were so shy and anxious sometimes. When we went to your best friend’s birthday party, you clung to my leg and were so afraid to join the fun.

Someday you might ask about why you’re older than lots of the other kids in your grade, so let me tell you something. In Spring 2010, I went to the elementary school and registered you for kindergarten. Then I walked out the door and felt nauseous. Even though I had never considered another option, I suddenly felt absolutely certain that we needed a new plan. It took a few days of twisting your dad’s arm, but we were fortunate to get a spot for you in the perfect place. It was a private early childhood program with 2 teachers and 14 students. One precious teacher and three classmates from your preschool were going to be there with you.

So I’ve been spending the last year watching you blossom. Your self-confidence is so changed from a year ago. You recently went to the birthday party of a baseball teammate you hardly knew and immediately ran off to play and never looked back. Academically, you’ve shown us you’re a math whiz and your reading has taken off, and your creative talents as an artist and story-teller continue to amaze us. You, my love, are SO ready for kindergarten this fall. Trust me when I say that this bridge year was a precious gift that will continue to reward us for years to come.

You are a precious child of God, my dear. Lately, you’ve been so inquisitive about God and Jesus. I know you’re growing in your heart and mind towards the day when you commit yourself to Christ. Even thinking about it brings tears of joy to my eyes. And we’re so lucky to be surrounded by loving adults to help guide your journey of faith. Today we talked about the day you were born. You asked, “Why did you pick June 8th for my birthday?” I said, “I didn’t pick it, it just was your time to be born.” You said “I think God decided.” I know He presses thoughts on your heart and I’m so happy that you share them with me.

I was shocked when you were born with a head of red hair, a little in denial. But your hair is so perfect. When lice were spreading around your preschool someone said to me “At least you have a boy so you can just shave his head.” I was aghast. I’d shave my own head before yours. When you were two and we were in line for a ride at Disney World, I was holding you on my shoulder and you said, “Mommy, people are petting my hair again.” Complete strangers couldn’t resist the urge to touch your strawberry blonde locks.

You’ve always been so easy to please. For Christmas when you were three, you asked for bottled water and goldfish crackers. Today, you asked if I had gotten you a birthday present yet. I said “Perhaps…” Your reply? “Well, if you haven’t, maybe you can set your alarm and go to the store early so you have something to give me when I wake up in the morning.” But I’m pretty sure if I woke you with a hug and a smooch, you’d be content to forgive the omission of gifts.

When you were in your first year of preschool, Ms. Maxine said to me, “We just love Trevor. Thank you for sharing him with us.” You are my sprite, my imp. There is a spring in your step and a twinkle in your eye that makes people happy when they’re around you. Some of the things you say are so sugary sweet that people think you must be saying them to butter me up. But I know, truly, that you have abundant love in your heart that just overflows sometimes. You’re so genuinely empathetic. I see it in the way you love and care for your sister, comforting her when she’s sad, embracing her when she’s happy.

You and me…what can I say?

     “Trevor…?” I say.
     “You’re going to tell me you love me, right?” you say.
     “Well, it’s true, I do,” I say.
     “I love you more,” you say.
     “No, I love you more,” I say.
     “Impossible,” we both say.

Me and Trev, we fit together like peas and carrots. Some parents lament their children sleeping in their bed. Somehow, you sleep in your own bed 95% of the time, but I still get that precious 5% of nights when you’ll silently appear at my bedside under the cover of darkness and climb in to cuddle for the remainder of the night. It’s been our little secret, but you’ll ask me to wake you “when the coast is clear and Daddy’s asleep”, so you can sneak in and be my cuddle bug. I usually don’t, but once in a while I snatch you out of your bed and carry you to mine at 2 am.

Every day of my life, I think that I couldn’t possibly love you any more than I already do. But then you’ll give me a smile, a laugh, squeeze my hand, hug me, kiss me, speak from your heart and it happens again…my heart gets a little more full and have more love for you and life itself than I did yesterday. Thank you for being my Trevor Jacques Etienne, my Trevario, my TJ.

Love,

Mommy

2011-03-22T19:05:00.000-05:00

Round 20

Sometimes, I mistakenly think of a round of chemo as a round of a boxing match, where it's me vs. the chemo in the ring, fighting each other. But truly, the chemo is in my corner, battling the cancer on my behalf. And so today I give thanks.

Thank You, God, for this blessed day to be alive and spend time with the people I love. Thank You for the gift of chemotherapy. I give thanks for the brilliant scientists and doctors who have worked tirelessly to develop these drugs that sustain my life. I pray for the souls of the brave pioneers who came before me and participated in clinical trials to prove the safety and effectiveness of the medicines I receive today. I give thanks for the medicines which help limit the side effects of my chemotherapy and allow me to feel strong and healthy while I am undergoing treatment.

Bless the hands of the nurses, doctors, assistants, and volunteers that guide me, comfort me, and care for me at the hospital. Thank You for the blessing of health insurance that enables me to afford these treatments. I know my healthcare costs could easily save lives of many afflicted people across the globe. I struggle to find myself worthy of such expensive treatment when there are so many with problems bigger than mine. Help me to remember Your grace and blessings in my life and find a path to make my time here worthwhile.

Thank You for the physical and mental support of my family, friends, and strangers who touch my journey. I have never once felt alone on this road and I am thankful for their comfort. May I be fortunate enough to be a blessing to others as they have been to me.

Amen.

2011-02-14T19:28:00.000-06:00

Be Still, My Heart...

Trevor:"Is this OK?"
Me: "Is what OK?"
Trevor: "Laying here next to you."
Me: "Of course that's OK, why wouldn't it be OK?"
Trevor: "I didn't finish my supper so Daddy said I don't get any treats tonight."
Me: "And?..."
Trevor: "Well, laying here with you is kind of a treat, isn't it?"

Happy Valentine's Day

2011-02-12T13:59:00.002-06:00

Sean (sitting on the edge of the bed): "I guess I should wear some sunscreen today."
Me: "What do you think your doctor would say?"
Juliette (walking past): "No more monkeys jumping on the bed!"

Guess we should stop saying inappropriate things while she is within hearing distance, because clearly she's listening in.

2011-01-23T22:44:00.003-06:00

Slow down...

Dear Hayden,

Eight years ago today, I finally understood the meaning of love at first sight. The day started off ordinary enough, routine check-up at the doctor then off to work was the plan. Lots of chatter with the doctor, "Are you pre-registered at the hospital yet?" "Soon you'll have to start coming in every week", then "Ummm...5 cm...it looks like you'll be having a baby today." And suddenly there you were, my little man, ready to take on the world.

We spent six delicious months together at home. Friday afternoons were movie days for us. Your first show was "Bend it Like Bekham." Maybe you didn't like it because you slept through the whole movie. In the afternoons we would nap together in the big comfy chair in our sunshine-y spot with the dogs at our side. Neither of us had a care in the world. One day you fell asleep nursing and I transferred you quietly to your crib. I put my hand on your chest and felt your breathing and my heart was so filled with love I thought it might burst. There are hours of video of you doing pretty much nothing but it all seemed like such a miracle to me.

Then there was work and day care and then no more day care. Your daddy would come home from work and strap you into the Baby Bjorn and you would walk the dogs together. When you saw something exciting you'd kick your legs and flail your arms with delight. Then suddenly you walked and you talked and you slept with a bat and ball and glove.

We apologized for ending your magical days as an only child but we gave you the lifetime gift of brotherhood. And you embraced the change, running to pop the pacifier back in Trevor's mouth as soon as it fell. You started preschool and didn't look back as your world got bigger than just our little household. Eager to please, friends with everyone you met, "Hi, I'm Hayden, what's your name?"

Then there was a new baby on the way, and we moved Trevor into your room. The first night he climbed into your bed and I found you snuggled together in the morning. And things were just as we always hoped they would be. When Juliette arrived, you showed us true tenderness with your gentle spirit.

Now our days are so busy...baseball and basketball and swimming and school and friends. And here you are today, eight years old, "halfway old enough to drive" as you like to tell me (and I cringe at the thought). You humor me and sit on my lap and let me squeeze you and tell you I want to turn time backwards and put you back in my tummy so I can relive every precious moment that went by too fast. I rub your back to wake you in the morning and feel the shoulders that are no longer a little boy, but edging towards a young man. But thankfully, a young man who isn't too big to hold me hand or let me wrap my arms around you when we're walking together at the mall.

Happy birthday Hey-hey-Hay-de-O. I love you.

Mommy

2010-12-21T23:20:00.005-06:00

Dear Three-Year-Old,

It amazes me that we have arrived to this moment. On your first birthday, I felt very sick. We found out soon afterwards that I had a cancer growing inside my body. I had surgery a few weeks after your birthday and my doctors said that with aggressive treatment, I could expect another 18-24 months. I immediately thought of you, my tiny girl, barely one, not walking or talking.

I couldn't face the thought that I wouldn't live to your third birthday. I kept thinking that people don't have permanent memories from before age three. All I could think was that you would never remember me. Of course, I worried for your brothers as well, but at least they would know our life together, and not feel they had grown up completely motherless.

I was afraid for myself too, scared I would feel sick and miserable for every day for the rest of my life. Scared of the unknowns of chemotherapy and dying. People think I was strong then, but I wasn't. I just didn't want life to be so unfair to you. A little girl needs a mother. I tried unsuccessfully to convince your father he should start thinking about remarrying as soon as I died, but as you might guess, that was a futile effort.

So I set on a course of making it to this day, your third birthday, and by some miracle we have arrived here together. But the real miracle has been the in-between. The one-million, fifty one thousand and two hundred minutes of joy you and our family have given me in the last two years. I was so wrong in thinking that I should pursue aggressive treatment because YOU needed to know ME. The truth is, I needed a chance to know you. And here is what I know: three years ago, a light came into this world. The world has made three trips around the sun since that day and that light burns brighter and warms the lives of us all.

You wake up and pad into my room dragging your blanket behind. I sewed that blanket before you were born, and hope it doesn't wear out with all that dragging around. Sometimes I can coax you into cuddling for a bit, but you're more likely to snuggle in Trevor's bed than mine. You two share a special bond. He adores you and you would follow him to the ends of the earth.

You know what you are about. "Read to me mommy," you say as you take my hand. We've all learned that you won't take "no" for an answer. "Play Memory with me," is the most frequent request these days. I hate to play Memory, I'm so bad at it. And you're so frighteningly good at it. But I do truly enjoy watching the delight you find in playing.

Since you were born, I think about 90% of our clothing expenditures have been for you. It is my addiction and you always seem delighted to try on the latest outfit or pair of shoes. Lately it's all about the posing. Hands on the hips, a little thrust to the side, your sassy best. Your spirit has a contagious delight.

You love your little friends, Libby, Spenser, Brianna, Liora. It will be another 9 months till you start preschool but I know you're so ready. Ballet, gymnastics, swimming...you're so excited to try anything new. And you're such the picture perfect angel in your leotard (which you insist in wearing to bed sometimes) tights, ballet shoes and tutu.

Oh, and as much as I don't want you to think that your self-worth is determined by how you look, your head of fairy-tale blonds curls brings me a ridiculously unnatural amount of joy. I look back at the pictures of my practically bald one year old and think, it was so worth the wait for this hair. You're unbelievably patient through all the combing and placement of bows, but there is a certain perfection to your unembellished head of hair, with that perfect ringlet curl falling over your right eye.

Now about that temper, my darling girl. I must say, you are a bit volatile and none of us are quick to cross you. Passionate, spirited, determined...and just a little bit of a hothead. Nobody will ever accuse you of being bland and submissive, my love.

So we have arrived together at this day that was never promised, but always hoped for. I'm thankful for the opportunity to watch you become this amazing little person, so full of life. Thank you my Petunia.

Love,
Mommy

2010-02-14T11:25:00.004-06:00

Happy Valentine's Day

Word on the street is that some of you are Valentine's Day haters / boycotters. To each his own, but I personally cherish an extra day of love and sweetness each year. Maybe it's because I had my first date with a special boy on Valentine's Day 1999. Maybe it's the opportunity to send out sappy sweet cards like these...

Full size images (yes, bigger is better), can be found here and here.

2010-01-19T15:24:00.000-06:00

Call me NED...

In cancer lingo, that means "No Evidence of Disease". Maybe I'll change my name to NED legally like that guy on the Bengals who changed his name to Ocho Cinco. Because I'm feeling particularly foolish today.

2010-01-04T16:58:00.002-06:00

Just Wait...

My new oncologist (oh, I didn't tell you, I have a new oncologist), apparently didn't read my chart and see that I'm allergic to the IV contrast they use in the CT scans. And apparently you need to start a pre-medication regimen 13 hours before your scan if you're allergic to contrast. Sooooooo...I'm now scheduled for a scan on Jan 15th and I'll be meeting with the doctor to get the results on Jan 19th.

Maybe sometime between now and then I'll post some pictures or something to tide you over till we have some real news.

2010-01-04T10:05:00.001-06:00

Scanxiety

Def: (n) the tension which builds particulary amongst those who have or have had cancer as they move towards their regular check up scan, hyperscanxiety being the period as they await results!

CT Scans and chest x-ray today. Results Tuesday. The waiting is the worst part.

2009-10-18T19:46:00.003-05:00

13...

Neither lucky nor unlucky. Just done. 13 rounds down and hopefully only 3 to go. That's the great unknown, the one I don't even like to consider. Am I almost done? My focus is on getting to round 16 and getting a break. I know the odds say that this won't be the end of my journey, the end of this dance with cancer. But I just want a clean scan at the end of round 16 to buy me a 3- month chemo holiday. Just a few months to breathe. One clean scan with no surprises. Not too much to ask, I hope.

Oh, and no post is really complete without pictures, is it?

2009-10-04T22:02:00.005-05:00

Pigs...

I had a vivid dream 2 weeks ago: I was eating a hot dog loaded with relish and mustard. Why? I've been vegetarian for 17 years and besides, those were never my condiments of choice. Really, if I'm going to go carnivore, a hot dog isn't a brilliant beginning. A few days later, I had a dream where I was scarfing down all the bacon I could get my hands on...and begging the kids not to tell anyone.

Huh? It didn't make any sense to me either, until Hayden developed a fever last Sunday and I took him to the doctor. The obvious diagnosis, pork-product obsessed mom, is the H1N1 Swine flu. Which was just miserable for my never-sick boy. And it was equally disconcerting in my immuno-surpressed state to try to love the sweet boy and dodge his nasty germs at the same time.

I went for chemo #12 on Wednesday and was almost certain we'd delay since I was still in the incubation period for the swine flu. It seemed a little crazy to me to beat down my immune system even further when we had active flu germs in the house. But the second my oncologist relented and said we could postpone a week (I only wanted a 2-day delay), I freaked out. Everything I do is scheduled around good (non-chemo) and bad (chemo) weeks. Delay one chemo cycle by a week and the rest of my year is thrown into a tizzy. I'm sure we could recover, but you know how I like to plan. And so far so good, no swine flu for me.

Now back to those darned pigs...there has to be something good pig-related in my life, right? How about pigtails?

Yes, pigtails are a winner for certain.

2009-09-22T19:26:00.003-05:00

Back to the Grind...

Actually, it isn't a grind, it's a slow drip infusion. I've finished my first post-op round of chemo. Hopefully, it's one down and five to go. The scheduled treatments should end just after Thanksgiving and then I'll have a scan. Clear scan = 3 months of freedom! I don't want to get too far ahead of myself, but the plan forward from there would be scans every 3 months for a year unless something new pops up.

My medical oncologist is still a little reserved. She says that given the number of positive lymph nodes I had from my original surgery, we have to assume we're dealing with systemic disease. Which is why we're going for the 6 rounds of chemo post-surgery. Hit it hard, knock it down, try not to knock me down in the process. Then wait and see. It's hard for me, I've always been such a planner, I want to know exactly what I'm going to be doing next January, next March, next June. But cancer just isn't something you can plan around. If nothing else, it teaches you to be thankful for each day because that's all any of us have for certain.

The biggest dilemma for me now is figuring out how to balance the chemo side effects with the positive effects. I've already had 11 rounds of FOLFOX 6. One of the drugs in FOLFOX is called oxaliplatin and it causes nerve damage. It builds gradually over time, but I'm having progressively more numbness in my hands and feet...a few balance issues (high heels are out!), trouble with buttons and pens.

I've already had more of the drug than many people are able to tolerate. With some people, the nerves repair themselves after the chemo is done. But not for everybody, and the nerve regeneration can take a year or more. We know from the pathology after my surgery that this chemo cocktail has been very effective for me, but it's anybody's guess which of the drugs is the winner or if it's the combination. So do you discontinue the potential miracle drug so that you can text better on your Blackberry or do you keep at it because you can't do much text messaging from the grave and maybe the nasty drug is saving your life? It isn't that simple obviously, but I'm going to keep after it a little longer at least. But if anybody wants to volunteer to be my personal valet and button my clothes, I'm accepting applications.

I'm not seeking advice on this whole thing, just pondering aloud. Oh well, you're reading this so you must want to know the details, right?

So happy Fall. How do I know it's Fall? Because I had this conversation with Hayden today:

Hayden: "Mom, what time is it?"
Me: "4:27 PM"
Hayden: "OK, it's Fall. Fall started at 4:18"

Of course I had to look this up on Wikipedia to verify, but Fall did indeed begin at 4:18 PM Central time today.

Here's a little one from Sean last night. He was sitting with Hayden at the table looking at the Astros 2009 schedule and out of nowhere comes:

Hayden: "Hey, remember on June 28th when they were playing the Detroit Tigers? I thought they were gonna win that game. But then Detroit got that 2-run homerun in the 9th. It was off Valverde...or was it LaTroy Hawkins?...No, Valverde, yeah Valverde...and they lost 4 to 3. I thought they were gonna win that game."
Sean: Laughing out loud
Hayden: "Why are you laughing?"
Sean: "No reason"

We're really going to work on how we can harness the power of his brain. Y'know, for something other than hospital phone numbers, solstice times, and stats from 3-month old baseball games.

2009-09-14T20:22:00.006-05:00

Random...

The kids are back in school which must mean summer has come to an end. I feel like I missed it, being away so long. But at least we're in Houston and the temperature will stay in the 90s for a few more months. So maybe we still have a few more trips to the pool in our future. Maybe I should get a new bikini to show off my sexy scars? Except every time Trevor catches a glimpse of my belly he screams "Mommy, I don't want to see that!" As in, "Hey freakshow, you're scaring me!"

I always take pictures of the kids on their first day of school. If only I could be as efficient as my friend Mackenzie and find them all so I could show you a "look how we've grown" montage. I can't even seem to put Trevor and Hayden's pictures on the same hard-drive and they were only taken a week apart. But here's my handsome 4-year old on his first day. About 30 frames of goofy faces were sifted through to find one decent shot...
And here he is enjoying himself on the playground at his preschool. I'll miss this place next year.

One week later, here's the little man displaying the BITE mark on his chest. Apparently a little girl had moved from the swingset to another part of the playground, but when she saw Trevor climb onto "her" swing, she decided she wanted it back. Trevor, being the stubborn middle child, held his ground and got a lovely bite to the chest. It left a nice mark, even through his shirt. When we talked about ways to avoid these problems in the future, I was hoping for something like "run and tell a teacher" and he was thinking more along the lines of "kick her down before she can get her teeth on me."

Last, but not least, I can check one item off my 2009 to-do list. Matching Christmas pajamas? Mission accomplished. Every year I get matching Christmas pajamas for the kids, and every year it gets a little harder. Hayden's getting big, the other two are still toddler size, and we need something unisex. If you wait till November to look for something, you'll be sorely disappointed. Last year I spent Christmas and many days thereafter in the ER so we didn't get the traditional Christmas morning picture. Fortunately, Sean left the tree up till I got home in mid-January so we staged a shot. This year we got a practice shot in September just in case.

Hopefully I'll be through with treatments for a while come Christmas this year, so we may take a family vacation. Given Sean's aversion to cold weather, maybe we'll go to the Carribean or somewhere warm. How do you think these fleece pajamas will work out Christmas morning on the beach?

2009-08-23T22:51:00.002-05:00

Something...

People keep telling me I need to post something. I was completely offline for two weeks and even now that I'm back on the iPod I don't feel like I have much to say. Most days are the same: wake up, lie in bed, maybe muster the energy for a shower, fall back in bed exhausted, lay in bed for the rest of the day. Sounds exciting, I know.

I've ventured out of the house 4 or 5 times since I've been home. Once to take Malik (one of our dogs) to the veterinary opthamologist, only to learn that he needs surgery to have his eye removed. Sounds awful, but he's been blind in the eye for a few years and his detached lens has shifted, causing pressure buildup and lots of pain so I think he'll be more comfortable with it gone. Still, nothing like an eye removal to snap you out of your own cave of self-pity.

Other outings: doctor's office for stitch removal and prescriptions, GapKids to buy some school shirts for Hayden (disastrous outing: dizzy spells, hot flashes), lunch and pedicures with Shelley (yay!), family breakfast at LePeep (gooey buns, yum). Each and every trip has left me completely exhausted. I just have zero stamina, zero pep.

My pain control has been good since I left the hospital. I've only taken a few Tylenol here and there for headaches. I think after the nightmare of Fentanyl withdrawal in the hospital, I'm afraid to take anything stronger. So I mostly grin and bear it. I still hit the nausea meds pretty hard, but they've kept things manageable. I'm starting to wonder if the fatigue is as much hormonal as surgical. I'm sleeping better than I was initially, but still not great. So tonight I took my first hormone pill and we'll see if there's any improvement. I was hesitant to take something, but I'm almost 5 weeks out from my surgery and don't feel like I'm where I should be.

What's next? I meet with my medical oncologist next week to put together a plan for chemo. Typically, people would do 6 cycles pre-surgery and 6 cycles post-surgery. Due to scheduling issues with the surgery, I did 10 cycles beforehand. So I'll probably do less than 6, but I don't know exactly how many. It's normal to wait 6-8 weeks after surgery to give the body a chance to heal, so I've probably still got a few weeks to go. I'll keep you posted.

2009-08-11T16:35:00.002-05:00

We're going home...

Just so you know, Lisa Marie was discharged from the hospital this afternoon. The final Jackson-Pratt drain was removed early this morning meaning she was finally free from all tubing and other attachments that had restricted her these last 3 weeks. We will spend the night in the hotel here in the hospital and then we should be arriving back in Houston at ~6pm tomorrow followed shortly thereafter by hugs and kisses to 3 little ones. It will be good to be HOME.

2009-08-08T22:12:00.002-05:00

Post-Op Day 18

There have been some signs of improvement since the last post. She has begun sampling a few of the delicacies of the WHC cafeteria. She has managed to keep down about 4 bites of mashed potatoes and 7 or 8 bites of mac & cheese. She has also had about 1 full serving of yougurt and consumed one bottle of red Gatorade. This may not sound like much to you but for someone whose last encounter with real food was 20 days ago, we think it's a huge step in the right direction.

The energy level continues to be greatly reduced from when I left her last Monday to visit the kids for a few days and she still struggles some with getting longer periods of continuous sleep (meaning > 1.5 to 2 hours at a time). She did get 3 walks in today, to the end of the hall back past the nurses station around the staff elevators before returning to her room. Again, another step in the right direction.

Some pain remains (she says 3 on a scale of 1-10) but she hasn't taken any pain medicine for the last day+ because it seems to add to the nausea. The nausea remains a bit frustrating but there has been only one instance of vomiting in the last 48 hours, and that may have been a blessing in disguise. As I was heading out the door for breakfast this morning, I heard her call my name out with a sense of urgency. It seems out of the blue, her heart decided to have one of its SVT episodes. She's had these off and on in the past but it's always a little scary. Her heart goes from beating normally to beating 190 beats per minute this morning. You can see the veins in her neck pounding so fast. The doctors came in and were going to give it a few minutes to correct itself. If it didn't they said they would cardiovert with adensonine. She's had this done twice in the past. Essentially, they stop your heart for a second to get it back in the right rhythm. It's not too bad except for the eerie feeling that you're dying and the fact they have a crash cart right there in case your heart doesn't decide to start again on its own. Anyway, none of that was necessary since right after the well-timed aforementioned vomiting episode, her heart rate returned to a much more acceptable 95 beats per minute.

All in all a low-key day, but she did begin listening to music on the Ipod and even watched a couple of DVD episodes of the Sopranos on the computer. This was the first time since the surgery I think that any kind of TV show has been watched. The TV hasn't been on because that would mean moving the pictures of her 3 lovely children from their prominent spot in front of the screen.

She of course misses the kids more each day and can't wait for this exile to end. We treasure the few brief minutes we get to hear their voices each night. How lucky I was to be able to hold them in my arms and tuck them into bed a few times this week on my all-too-short visit home. But we know the triumphant return is nearing and that the hugs and smiles and laughter of those most precious to us await. And that, my friends, is sufficient to sustain us through all sorts of trials.

2009-08-07T11:25:00.002-05:00

Another brief update by Br'er Liar

Lisa Marie went for a short walk yesterday. She also went for a similarly short walk today to the end of the hall. The emphasis is on the word short, particularly when compared to the walks she went on earlier this week. The past thrice daily walks to the furthest point in the hospital (information desk) are about 420 of my steps each way (to say nothing of the shorter steps of baby sibling), whereas the walk to the end of the hallway is only about 30 steps each way. I'm sorry I can not be more exact, but retard elder brother keeps forgetting or failing to locate a pedometer at the two different Targets shopped at so far.

Any way, no significant change. Lisa Marie typically feels cold after leaving the bed, whether it be for a short walk down the hall, or simply going to the bathroom. Sean puts on her sheet and then her blanket, and then within a few minutes she is hot and wants the blanket off. To the extent that many of these symptoms are in fact withdrawal syndrome related from the end of the fentanyl citrate solution's availability, it would appear that they are lasting more than 48 hours.

2009-08-07T08:52:00.002-05:00

A brief update by Br'er Liar

There is little change in Lisa Marie's condition in that she continues to experience nausea and remains listless. The latter may be due to dehydration so they are continuing the influx of fluids via the IV line. From my admittedly brief observation since arriving this morning she does appear somewhat more comfortable. She is neither moaning nor openly expressing her discomfort via yelps that yesterday escaped her lips despite attempts to maintain her stoic demeanor.

On a positive note, Sean arrived safely at BWI on Thursday afternoon and was delivered to the hospital room (sans bow or wrapping paper) by 4 p.m. Sean tapped into the ring and Katy tapped out for her 5-6 hour drive home. Many thanks to Katy for her kindness in attending to Lisa Marie since last Friday.

To further attempt the window dressing of a positive attitude I note that Lisa Marie has not vomited since 2:30 a.m. (Friday morning). Moreover, for all you medical devotees out there, the vomit did not show signs of blood or any other types of discoloration evidencing a serious problem. Instead the vomit merely appears to be regurgitated bile products. Furthermore, in case we failed to mention it previously, Lisa Marie is down to one drain and despite the nausea continues to demonstrate the positive sign of being able to pass gas and/or experience bowel movements.

2009-08-06T10:41:00.003-05:00

No rest for the weary…

(Authored by Kate the Kind) (posted by Br’er Liar)

I thought that 11:30pm to 1:30am was going to be the worst of it for my shift. Unfortunately, this was not the case. She slept until 4:30a.m. waking up in such pain (shoulder and back) and waves of nausea that she could not return to slumber. She could not even find a comfortable position in which to lie. 5:50am Zofran, no change. After I made two frantic nurse calls, they finally came to see for themselves how much she needed relief and that I was not going to stop pushing the call bell until they did SOMETHING! At 6:15a.m., the nurse arrived with a different pain medication - Dilodin (morphine derivative, I believe). Apparently this was chosen to provide a “breakthrough pain med to assist with Fentanyl withdrawal” (when did they decide she was in withdrawal???) This was a feeble attempt, at best, and actually ended up worsening an already bad situation. Dilodin was absolutely awful. Instead of pain relief, for which it was intended, horrible stomach cramping ensued. More vomiting. Exacerbated her shoulder pain, pain at abdominal incision and JP drain sites…

8a.m. Rounds: Docs decided that additional blood testing is to be done today (to check liver, pancreas, thyroid) to determine what is the source of this constant nausea. They also decided that two of the three remaining JP drains will be removed. The hope is that removal of these drains will quell some of the referred shoulder pain. When I reported to the profuse sweating that endured through the night, the “rounds team” reinforced that this symptom is more likely related to withdrawal from pain meds (fentanyl) than removal of ovaries. OK, so now they give these horrid symptoms a name: withdrawal syndrome. It could last 48 hours, but it will end, we’re assured.

9:30a.m. Painful removal of 2 of the 3 remaining JP drains (the last is still draining too much to be removed), but hopefully the pain will be worthwhile to get rid of the shoulder pain… we’ll see. Doc OK’d another med for nausea, since the Zofran isn’t cutting it.

9:40am She’s vomiting again. She’ll get the new anti-nausea in about a ½ hour. Discussed lack of clear liquid diet consumption with the doc and nurse… They are wondering why she’s not drinking anything. Um, hello, have you heard her report her nausea for the last 12 hours???? And, no, she won’t drink chicken soup, and the juice acidity will aggravate an already sour stomach. What’s plan B, folks?

9:45a.m. Yet another tray of clear liquids left room 2NW 20 without one thing consumed. I think we’re now all agreed that clear liquids are not a good choice. Mindy (favored nurse from previous post) thinks mashed potatoes (part of a FULL liquid diet, as opposed to clear liquid diet) are in LMs future.

10:00am Doc reports that LMs white blood cell count is UP! It was 2.7 and is now 14. Doc is very pleased with this. Unfortunately, LM is still too ill to be excited about this step forward.

10:15am Here comes Mindy again. She brings Fenigren, a different type of anti-nausea med, which doc who removed JP drains had promised. It burns going in, but it has a desirable side effect: sleepiness. Much deserved.

10:45 No longer writhing in pain or vomiting, but not yet in the peaceful sleep state we desire… keep your fingers crossed.

The plan for the rest of this Thursday: Sleep. Sleep. A little food, a little walking. Repeat.

Best part of this Thursday for LM? Sean is due back around 4pm.

A slight addition by Br’er Liar:

It never ceases to amaze me how little common sense some professionals apply to their job. The medical personnel act as if the fact that a clear liquid diet was authorized means that it necessarily: (a) is provided; and, (b) is consumed. Despite things such as ongoing nausea and the sweating and the pain and all sorts of minor discomforts, some people act as if their authorization/order on the chart means that must have occurred. I am just so relieved that Kate was present to act as Lisa Marie’s advocate.

There are the minor conveniences of having a bedside assistant in the form of a friend or relative present at all times. Let me note a few (all of which I have observed Kate and Sean provide in the past two weeks). Someone to put on and remove the inflatable cuffs. Someone to massage your shoulder. Someone to push the pain button periodically while you are sleeping (screw the rules against that particular practice). Someone to gather the materials for a self-administered sponge bath. Someone to hit silence while tracing the line to remove a distal occlusion on one or more of the pumps. Alternatively, someone to hit the silence button on all the machines until the nurse comes to change an empty bag. Someone to unplug the machines when you go to the bathroom or go for a walk. Someone to bring you a toothbrush, toothpaste and a basin to spit in. Someone to turn up the suction on your NG tube to clear an obstruction. Someone to push the nurse call button and talk when the patient’s voice has given out or is too hoarse and raspy to hear through the microphone on the bed. Someone to bring you skin lotions, and moist wipes, and shampoo or conditioner. Someone to help you wash your hair. Someone to hand you your comb and brush. Someone to adjust the fan to cool you off, or to open and close the door to provide fresher air. Someone to hand you the phone when a call comes in and you are conscious and able to speak. Someone to hand you a basin when you vomit. Someone to hand you a rinse cup to get the taste of vomit out of your mouth.

All of the above is just the rapid product of stream of consciousness. If I sat here for 5-10 minutes I am confident I could double, treble or even quadruple the number of things listed as there is more. But note the point is that these are merely minor conveniences. The reality is that the major convenience is a full time patient advocate. Because: (1) even if you are a highly educated Mistress of the Alchemical Arts; (2) even if you have read everything you can lay your hands on about cancer treatment and care; (3) even if you have already spent a few weeks in a hospital earlier in the year and know some of the ins and outs; it just does not cut it. You are sick and you are unable to even make your needs clear with sufficient vigor and force to penetrate the shell that medical personnel, who see sickness and suffering every day, have surrounded themselves with in an undoubted attempt to avoid being overwhelmed by the misery of it all. Whether it is continuing to push the nurse call button until you get their attention, arguing with the director of nursing to get the heck out of the ICU, or arguing with the doctors about needing pain or nausea relief NOW.

Please excuse me, it is 11:35 a.m. and Lisa Marie is vomiting again.

2009-08-06T00:23:00.015-05:00

Do you hear what I hear?? (at 1:20AM)

Kate here. I know that it's not just me. I know that each of you will be just as perplexed/annoyed/angered, or INSENSED!!! to learn that there is someone in this hospital who thinks it's a good idea to have hospital floors cleaned during the 11pm to 7am shift. And I'm not just talking about the floors in the long hallways, I'm talking about the floors that lie, literally, UNDER LMs door, being cleaned with a machine that sounds like a Mack truck. When I questioned the poor soul whose job it is to complete this duty at such an ungodly hour, he told me that this "intense cleaning" only gets done twice a month. How lucky we are that his twice a month schedule overlapped with her stay here...

While I was able to convince LM to take a short walk around 9:30pm, and she experienced several successful trips to/from the bathroom, tonight has been the worst night with her since my arrival last Friday. She has been desperately chasing sleep in the last couple of hours and finally found it about 20 minutes ago. She has been sweating profusely (PA Gary seems to think related to oophrectomy), causing her to want to simultaneously be covered and uncovered with a blanket - if she lifts the blanket, she's freezing, but she's burning up when she's covered. (Temp and BP are being monitored and nothing out of the ordinary has been noted). "Reference" pain in her shoulder and now also in her back are contributing to lack of sleep. I'm no Reiki healer, but I hope that my modest hands have been a comfort to her in these areas.

In addition to pain, nausea continues to be a problem - she can have Zofran every 6 hours and got some around midnight. She was due for percocet at 11:30pm, but wanted to wait for it until after the Zofran kicked in. She managed to choke down her Percocet about 12:30a.m. I'm torn about whether I'll wake her at 4:30am (percocet can be given every 4 hours)to ask if she wants another, knowing that if she wants to first take Zofran, she'll have to wait until 6am. I miss her PCA button (though surely not as much as she).

Be assured that pain, nausea, and sweating will be topic priorities during the 6:30am rounds with her care team.

Sean is to return around 4pm this afternoon and I will go home after a week of watching what no friend should have to witness another friend endure. I am thankful that I could be here for her, but, like the rest of you, I can't wait to hear news that she is well enough to leave. I know that Sean and Art will continue to provide excellent care of her. We are all extremely grateful to them for this.

For those of you who write comments on her blog... by doing so, you provide reassurance and love to her and to those caring for her. Keep them coming.

Upon my arrival last week, there was a note on LMs door that stated, "Do not disturb, patient is sleeping... except Art and Kate". The sign continues to be used from time to time. Before I leave tomorrow, I may alter it to be more specific, "DO NOT CLEAN THE FLOORS at 1 a.m., patient is sleeping. NO exceptions".

2009-08-05T16:53:00.004-05:00

Br'er Liar speaks again

Okay, after all the bad news of the day I am pleased to report that when the second pain pill kicked in it got Lisa Marie's pain under control. Rather than laying there sweating as she dealt with the pain, she is now resting comfortably. This is a good thing as the first two gowns of the day were so soaked with sweat that she had to change out of them (and the linens were kind of unpleasant until I changed them). But she is sleeping right now. Hopefully after the next round of painkillers (in another 35 minutes or so) she might even go for a walk. At present the only activities of the day were a sponge bath she gave herself and a few trips to the bathroom.

Katy the Kind is due to show up in another half hour or so. Thus, this may be my last update of the day. Thanks to all for flowers, kind wishes, useful suggestions, prayers, and every other form of support shown to Lisa Marie the past two weeks.

2009-08-05T14:15:00.004-05:00

And the pain continues

So we counted down the seconds and shortly after 2:30 p.m. got another Percocet. As these pills also appeared inadequate to some of our readers some helpful advice was offered by one via phone of perhaps asking for Toradol. The phone call was well timed as shortly thereafter the doctor came by to let us know that the letter had come in from the insurance company approving the past shot (this past Friday) and two more shots of Neupogen. Lisa Marie will thus be getting two more shots in the near future. This is apparently not of great concern except at pertains to room hygience and the presence of fruit or flowers (more on that later).

Lisa Marie has continued to be listless the entire day as she struggles with pain/discomfort. On the 1-10 scale her pain has been a minimum of 6 for most of the day and has been 7 of late. So naturally Br'er Liar took advantage of the doctor's presence to begin gently lobbying in the pain relief department. Getting the song and dance about how she is now on Percocet and has to ask for it, it was necessary to cut that conversation short as rapidly as possible. So Br'er Liar rather bluntly noted that she had one pill at 10:30 a.m., another at 2:30 p.m. but was still in pain at levels of six or higher all day. Yes, yes yes being on oral medication might be necessary for her to eventually get discharged. However, Lisa Marie's pain level was preventing her from walking at all (down from 3 or more long walks a day). The no walking bit finally got through and the doctor questioned today's nurse (Brandi) and confirmed the details of past pain relief for the day. He emphasized the importance of getting up and walking when possible, even if only a little bit. At that point he said he would get right on the pain issue, and shortly thereater Brandi came in with a little pill cup with what I presume is another percocet.

Lisa Marie took her pill and managed not to vomit it back up. Due to the nausea she asked for some more Zofran. The syringe got hooked in but Lisa Marie began crying out in pain as it was being administered. So the Zofran took about 5 minutes to inject slowly. So there may be a problem with the current IV line or it may be inflammation of the vein resulting from the admininistration of medications. Brandi maintains that before the Zofran the arm was improved in color, and that it had colored somewhat in a similar fashion this morning after the administration of Benadryl. Regardless, another poking of the vein is currently underway as I type this language. Well, sort of underway as Lisa Marie's pain level must be down as she is gently remonstrating (quoting Sean, stop laughing Vito) with the very soft spoken woman of Asiatic descent. The conclusion of the story is that the IV has been successfully moved from her left arm to her right arm. Her left arm was hurting quite badly.

All in all this has been a rotten day for Lisa Marie. Yes she is probably in the home stretch we really have to hope that this second pain pill (taken at about 3:23) kicks in soon. As of 3:53 the pain does appear to have begun decreasing.

As Lisa Marie is getting more Neupogen she is banned from having fresh fruits or flowers around so all the pretty flowers are exiting the room shortly. DO NOT SEND ANY MORE FLOWERS FOR THE DURATION IN VIEW OF THE BAN ON FRESH FRUITS AND FLOWERS IN THE ROOM. Dear me, even as I type this another batch of yellow flowers are on their way into the room. . . Lisa Marie appreciates the thought even though they only add to the visitor sitting room beautification project at this point.

2009-08-05T09:43:00.002-05:00

The name of the game remains pain.

So it is Wednesday morning and Br'er Liar has returned to dungeon room NW20 here at the WHC. While Lisa Marie received the expert care and compassion we have come to expect from her pal Kate the Kind, the fact remains that at some point in the past 12hours the relevant hospital personnel have absconded with her pain pump. More specifically, about 10:20 a.m the nurse (Brandi) took it and at 10:30 a.m. Lisa Marie got a Percocet. Needless to say that referring to this as causing Lisa Marie some discomfort is similar to referring to Rwanda having a small problem concerning people with machetes.

So basically, while there are some clear juices in the room for Lisa Marie to consume she is disinterested in drinkin the same. She does not want to go for any more walks because of the pain. In fact, when I walked in the door she opened her eyes and looked at me rather dismissively. Upon further examination I determined that was not a dismissive look, but simply the appearance of someone whose face is all scrunched up from being in pain. I know that everyone says that pain is preferable to nausea, but unlike nausea pain is more easily managed. . . So I will give this a day to see if Percocet is adequate to the task. If it fails to manage pain then I will of course be forced to initiate the slowly escalating levels of demands for better pain management. We can hope that it does not reach the level of unholy ruckus that those who know and love me see once a while as the shining example of my undersocialized self.

Despite being informed by Kate the Kind that Lisa Marie slept better last night, she looks exhausted and as beat up as any day other than her wonderful interlude in the ICU. See her posted pictures in posts below for the details of the new "in" look of puffy eyelids. While Lisa Marie no longer resembles someone struck by the entire fleet of Ryder trucks, she is definitely in pain. Suffice it to say that I am counting down the 213 minutes until she can have another Percocet. Or maybe that should be 12,780 seconds?

2009-08-04T16:10:00.002-05:00

Another quick post by Br'er Liar

So a favored nurse Mindy had the 7 a.m. to 3 p.m. shift today. In a transparent attempt to part on a bad note to make up for her otherwise sterling behavior in the past week, Mindy waited until near the end of her shift to remove the urinary catheter. Did everyone hear that yell in their respective states? But more than the lingering twinges of that particular sharp pang is the fact that they are rather precipitously lowering the dosage on the pain pump. It is a major hassle because Lisa Marie wakes up from naps in pain unless someone is pushing the pain pump button for her in her sleep.

We are down from yesterday's (lowered) amount of 30 mcg per hour maintenance infusion and 25 mcg per push of the button (possible every 6 minutes) to 10 mcg per hour maintenance infusion and 10 mcg per push of the button. This has been somewhat inadequate to the task at times. It is more than a bit inconsistent to refer to some advice as comprising mutually incosistent positions for her to need longer sleep periods to get to the deeper periods of sleep while simultaneously having constant interruptions and now reduced unprompted infusions of pain medication. I have to this point resisted the tempation to attempt to surreptitiously reprogram the pain pump, but the possibility remains on the horizon.

So she is much transformed from the octopuspider of last week. Only a small fraction of the lines and tubes of just a few days ago continue to emanate forth from Lisa Marie's weary and wounded frame. With clear fluids and solid foods off somewhere in the horizon I am hopeful for a discharge this weekend followed by a return to Houston within 24 or less hours. A return to a bedroom invaded not by nurses, but by snuggling offspring in the form of Hayden Swat King, Trevor Gaptooth, and Juliette the Cute. When instead of being inspired by pictures of her children, Lisa Marie can again cuddle with the real thing.

2009-08-04T12:56:00.002-05:00

Good news. Despite my preference not to steal her thunder I am surreptitously posting this while Lisa Marie is distracted chatting with her friend Anne. After weening herself from her diet of guacamole milk shakes my stupendous sibling had the dreaded tube of NG removed today. Planned start on clear liquids tomorrow and solid food a day or two after that. Preliminary projections of escape from Alcatraz this weekend!!!! Wahoo!

To quote a song:
We gotta get out of this place
If its the last thing we ever do

2009-08-03T20:26:00.002-05:00

Plugged...

So the doctors decided today to disconnect and plug my NG tube, despite the continued high bile output. If I throw up, then they conclude that I'm not ready to have the NG tube removed. If I don't vomit, apparently I'm ready for the tube to be extracted. Sounds highly scientific, doesn't it? But since they removed my nutrition line a week ago, they have to either pull my NG tube and start me on food, or reconnect the nutrition to my port. They really don't want to do that because they still suspect it to be infected.

So today has mostly been Vomit Watch 2009. Only slightly more exciting than the hurricane tracking on the Houston news channels.

Today has been my first day without Sean. He left me in the able care of my brother Art and my friend Kate. They did a stellar job. The kids were very surprised when Sean walked into the house at around 9 am this morning. I told them to expect a very special surprise that I was sending. Trevor had 2 comments when I asked him how he liked his surprise. "It was already all put together". My little Bob the Builder apparently prefers his toys with some assembly required. Then he said "Surprises are supposed to come wrapped in present paper". So if someone out there knows the best way to gift wrap a Daddy, let me know.

2009-08-02T20:40:00.002-05:00

Setbacks....

Too much of this...

means no early release, despite all of my good behavior. The doctor said this morning that my bile output is still too high for my NG tube to be removed anytime soon. Which also means I won't be released anytime soon. So much for high hopes.

Otherwise, all is going well. Still walking, feeling pretty good, no fever for 2 days in a row.

The babies need some extra loving, so Sean is headed home tomorrow in my place. He'll return on Thursday. Art and my friend, Kate, will stay in his absence.

Hopefully I'll have better news to post tomorrow.

2009-08-01T20:06:00.012-05:00

Picture-Palooza...

Today was a pretty decent day. My friend Kate drove in last night and has brought much good cheer with her. She helped me win a battle over a PICC line last night (which I believe should not be inserted bedside) and we were rewarded with a perfect new IV this morning despite the fact that las night I was told there was not a vein to be found on either arm. Good friends near and far are lifting my spirits daily. I'm walking up a storm. Wish I had a pedometer to track, but I'm up to 4-5 brisk walks of 20-30 minutes each per day.

My days are brightened by the look and smell of lovely flowers such as these...
And the view at the foot of my bed is rather uplifting as well. Happy feet and lovely children continue to motivate me to try to get healthy and home as soon as possible.

Here are some of the gorey details. I started out with the following:

1) 31 stitches down my abdomen. Basically split from top to bottom. Belly button permanently gone (it was mentioned in the biopsy report as one of the "samples" that were submitted for analysis)

2) 3 stitches to close my colostomy. Yay!

3) 6 Jackson-Pratt drains to remove blood and fluid collection from the various surgery sites.

4) 6 EKG leads so they can constantly monitor my heartrate and hassle me when I exert myself too much. They tell me the fastest way out of here is to walk-walk-walk, but if my heartrate hits 160 they want me to sit-sit-sit.

5) 1 central line, removed about 5 days after surgery.

6) NOT a tracheotomy scar. Don't know what it is. Woke up with it in the ICU and nobody will fess us to having done it. Nice, eh?

7) Connection to my medi-port.

So here's a little photo-montage of my journey. Here I am the morning of my surgery, only slightly apprehensive...

This is the first shot in the ICU while I still had the breathing tube. Perhaps not my finest super-model moment.

Day 2 in the ICU. Breathing tube is out, but really not looking a whole lot better. At least I can tell you that I felt better than I looked here.

Day 3, still in the ICU, but ready to hit the road. Trevor's doggie and I have become constant companions. He's the only one the nurses haven't tried to throw out of my room.

Day 4, out of the ICU and into a regular room. Don't Doggie and I look so much happier?

Day 5, starting to feel like myself again and styling in some fancy scrubs I bought on the internet in preparation for this extended hospitalization.

Day 6...Ahhh...finally back to the old me. Hope you don't mind that I photoshopped out the NG tube. It was just so unsightly and detracted from my otherwise lovely appearance.

And there you have it, my week in pictures. Be sure to go out on the internet and post some pictures of your worst days too. Because once it's on the internet, it lives forever.

2009-07-31T19:34:00.002-05:00

Returning from the Benadryl-induced coma...

Well, we still haven't pinpointed the cause of my fever, but the good news is that it has subsided for the most part. Yesterday and today I hovered around 99.5 deg F all day, which is fine according to the doctors. They're continuing the course of antibiotics through my port in an attempt to save the port if it is the source of infection. This particular antibiotic, while not technically on my list of known allergies, makes me itch like crazy. So I get premedicated with IV Benadryl. Night night Lisa Marie. I'd say it's added 4 hours of sleep to my day.

I did have a CT scan (with rectal contrast, can you say Good Times?) yesterday to confirm that my anastamosis (the point where my bowel was reconnected) hadn't sprung a leak, causing the infection. That test showed no problems so our biggest worries have been eased significantly.

Yesterday, I thought I might be getting a cold sore on my upper lip. So I sent Art to the store for some Abreva. I was wrong, I wasn't getting a cold sore, I was getting six cold sores. I should have sent him to buy stock in Abreva (only $20 for 0.07 ounces). I'm guessing the nasty cold sore virus took advantage of my weakened immune system and decided to go crazy. Now isn't Sean sorry for all that smooching?

Today the docs told me I have neutropenia, which is basically a really low white blood count. The good news is this means the chemo is doing it's job. The bad news is I need a shot of Neupogen which, according to my brother-in-law, makes your bones ache. Again, good times.

The surgeon thinks I might get my NG tube out as early as Sunday and could potentially be discharged in the middle of next week. We're not getting our hopes up too high, but that sure would be nice.

Hayden called us this afternoon. Which was kind of surprising, given that he was at camp today.

The conversation:
Hayden: Hey Dad!
Sean (hearing background noises): Where are you?
Hayden: Dad, I finally found the phone at camp.
Sean: What do you mean you found the phone at camp?
Hayden: There's a phone in the corner of this room at camp
Sean: Why are you calling? Is your grandmother there?
Hayden: No, I just found the phone and thought I'd tell you the Yankees are on again tonight on WGN Channel 54.
Sean: Who gave you this number? Is your grandmother there?
Hayden: No, I just remembered it because I called it last night.
Sean: Well I don't think you're supposed to be on the phone at camp. Go back and play your shaving cream fight and I'll talk to you later tonight.
Hayden: OK, Goodbye.

So if my kid comes to your house, you'd better either lock up the phones or make sure you have unlimited free long distance calling. He has a real head for numbers and a love of phone conversation. Dangerous combination.

2009-07-29T13:28:00.002-05:00

Briefly...

Fever again this morning: 102.5 deg F. Still investigating. The most likely culprit is an infection in my port (potentially caused by non-sterile procedures in accessing said port). We're still waiting on lab results, but in the meantime they've taken me off IV nutrition and are running my IV fluids and pain meds into a regular IV in my hand.

They're running a prophylactic course of antibiotics through the port itself. If it turns out to be infected, it will have to be removed immediately since it feeds directly to my heart. Then I'd get a new central line called a PICC line for the remainder of my stay here. Fun, fun, fun.

Dr. Sugarbaker came today to share the pathology results. More details later, but the synopsis is that the results were great, better than we ever could have imagined.

Finally, I'm without my cell phone now so I don't have my contact files and don't have any opf your phone numbers. If you want to call us instead, the direct line to our room is 202-877-4920. If it's after 10:30 (we're usually up till about 11:30), you can call the nurse station at 202-877-3291 and ask for Room 2NW20.

2009-07-28T15:21:00.002-05:00

Fever

Temperature = 102.7 F. Investigating.....

2009-07-28T14:40:00.001-05:00

Sick

by Shel Silverstein

"I cannot go to school today,"
Said little Peggy Ann McKay.
"I have the measles and the mumps,
A gash, a rash and purple bumps.
My mouth is wet, my throat is dry,
I'm going blind in my right eye.
My tonsils are as big as rocks,
I've counted sixteen chicken pox
And there's one more--that's seventeen,
And don't you think my face looks green?
My leg is cut--my eyes are blue--
It might be instamatic flu.
I cough and sneeze and gasp and choke,
I'm sure that my left leg is broke--
My hip hurts when I move my chin,
My belly button's caving in,
My back is wrenched, my ankle's sprained,
My 'pendix pains each time it rains.
My nose is cold, my toes are numb.
I have a sliver in my thumb.
My neck is stiff, my voice is weak,
I hardly whisper when I speak.
My tongue is filling up my mouth,
I think my hair is falling out.
My elbow's bent, my spine ain't straight,
My temperature is one-o-eight.
My brain is shrunk, I cannot hear,
There is a hole inside my ear.
I have a hangnail, and my heart is--what?
What's that? What's that you say?
You say today is. . .Saturday?
G'bye, I'm going out to play!"

2009-07-27T23:32:00.002-05:00

My boys...

I love this little video that my sweet brother-in-law Michael shot of the kids on Sunday when he and his family drove down from Tyler, TX to spend the day with the Houston McLaughlins. Here it is, short but sweet...

http://www.youtube.com/watch?v=noOuVahbYCo

In case you don't remember Barnaby, please reference this old post.

2009-07-27T22:18:00.006-05:00

Long Overdue...

Well, Sean certainly has done a fine job keeping you updated on the medical stuff so far. Here is today's news.

Three of my Jackson Pratt drains were removed today. I won't say it was fun, but it is a relief to have them gone. The doctor who took them out is so sweet, but he tricked me a little. He pulled the first one, which was only about 4 inches long and completely painless. Then he said "That wasn't bad, was it?" I said "No" and he proceeded to pull drain #2 which was about 12 inches long and really rather painful. He apologized, but there was a lot of deep breathing and pressing the button on the pain pump before I was ready for drain #3 to be pulled.

Last night was OK. I spiked a fever (101.5 deg F) after having my port accessed yesterday so they were concerned about an infection (highly unlikely due to their super-duper sterile medical practices here, ha!). The doctor ordered a stat blood culture at 9 pm. The phlebotomist showed up at 1 am and I woke up as she was tying the tourniquet around my left forearm. She said "You've only got one usable vein here and it's this big one on the underside of your wrist. It's really deep and rubbery, so this is going to hurt a lot." A this point, I became wide awake and reached over and took off the tourniquet and said "No thanks. I have to have blood drawn in the morning and I'm not sacrificing my last vein to you." So she stormed out of the room declaring "Well, I'm the only one here tonight so it's me or nobody." I proceeded to go back to sleep.

At 4 am I was woken by the surgical resident on-call and asked why I had refused the blood culture. I told her that I'm like a human pincushion here. I get shots, blood draws, blood sugar tests, etc. all day long and I grin and bear it. Ask anyone. But if some incompetent (I didn't say this to her) phlebotomist says I only have one usable vein (which is crap) and that she's going to hurt me, I'm not going for it. A nurse can draw my blood instead. So the resident says she'll inform my surgical team of my decision. I later find out this is the same on-call resident who told Sean it was OK that I had thrown up all my bowel prep solution the night before my surgery. Which by the way, was very NOT OK according to Dr. Sugarbaker.

So today I claimed victory. I discussed it with my surgical team on morning rounds and they said since my fever was gone, I didn't need the blood culture. And they said my future daily blood draws can come from my port line when my TPN line is changed. Yay! Yes Carolyn, it pays to be snarky.

And yesterday's night shift nurse and today's day shift nurse? Fantastic! And today's night shift nurse is named Juliet so how can I go wrong? Now we're just waiting for the pathology results, which should be back soon. We're hoping for clean margins across the board, which would mean no cancer evident in the edges of the tissue they removed. We've come this far, I know good news is ahead. Stay with us and pray with us.

2009-07-26T23:29:00.002-05:00

Post-Op Day 5

It's 12:30 am and Lisa Marie is finally asleep. She was planning on doing her own post but she just couldn't make it so she asked me to give a short update. Today wasn't a great day. Very little sleep last night and only a very short nap today. Her NG tube was blocked for about 3 hours (meaning stomach acids built up), she was denied her antacid meds (or the nurse "forgot" even though we asked for it), she had a painful blood draw in the back of her right hand which left quite the bruise, she had her central line in the neck removed, and as she continues to become more mobile, the tugging of a central line tube, an NG tube, 6 Jackson-Pratt drain lines hanging from her abdomen, a catheter, and multiple EKG leads is beginning to take its toll.

However, even with all that, it wasn't a terrible day. She continues to make great progress, taking 2 long walks down the hall, to the elevator, down to the first floor, past the cafeteria elevators, past the Blimpies shop, and to the first floor entrance information desk. This is not a short walk. She also had a couple of calls from friends which really brightened her day.

We're looking forward to starting our second week in DC, which means we're that much closer to returning home to our friends and most precious and sorely missed children. Lisa Marie promises to be back blogging tomorrow. You may even get a few pictures of what the aftermath of a cytoreductive surgery with hyperthermic intraperitoneal chemotherapy looks like. (In the blogging business, we call that a teaser.) Stay tuned and wish her a good day tomorrow.

2009-07-26T04:03:00.002-05:00

Belated Saturday post...

Hi, it's me, Lisa Marie, back at the helm. Sean has decided I'm recovered enough to resume blogging. But since I only get freed from my prison, er bed, a few times a day for short walks, I didn't have the tools at hand to put together a legitamate post. But I thought i'd write something brief here at 5 am while I'm waiting for a shot of beta blocker to calm my heartrate (too much dancing to iPod tunes if you ask me, but the doc disagrees. Saturday was overall a very good day, although we got off to a rough start. Turns out my pain isn't well controlled when I fall asleep for 3 hours and neglect to hit the button on my pain pump so I decided to stay awake the rest of the night and babysit the button. No sleep makes for a cranky sore girl. But I got some rest in the morning, had great nurses, and good news on the recovery front. Want the news? Maybe TMI, but we have bowel sounds. Which means things are starting to work inside and we're one step closer to going home.

Well, I've gotten my shot and would like at least 45 min of sleep before my next walking expedition, so that's all for now. Thanks for all your prayers, messages, love, and support.

LM

2009-07-24T23:41:00.002-05:00

The End of a Good Day in Room 2NW20

It's near midnight and all in all Friday was a good day. Abbie, the day nurse, and Darlene, the night nurse, have been SUCH a welcome change from the previous day. They understand what patient care is all about. Lots of communication, lots of putting the patient's needs first, true angels of mercy. We appreciate them very much.

In true Lisa Marie fashion, as soon as she was able to this morning, she bathed and chunked the standard hospital issue gown for her much more stylish Dear Johnnie model. (See photo on Friday's Facebook page.) She also graciously accepted compliments on her lovely pedicure nail color. She then proceeded to walk from the room to the aquarium and back, then to the nurses station before returning to the room. Still the biggest problem has been the nausea and the shoulder pain. The walking tends to bring on a little nausea because during the walk the suction from the NG tube has to be disconnected. This means the stuff that is typically being evacuated continuously from her stomach is allowed to stay there when the NG tube is not sucking and it builds up and makes her nauseated. (If your're interested, you can also check out her Facebook page to see an example of the green slime that is sucked out.) We have since requested that the dosage of her anti-nausea medicine, Zofran, be increased from 4 mg to 8 mg. Her standard dosage during her chemo from MD Anderson was 8 mg and the higher dosage seemed to bring more relief as the day went on. Before the night was over, she took another walk to the aquarium, back to and around the nurses station, over to 2Northeast (we're in 2 Northwest), back past the elevators and then back to the room. She's one tough cancer patient. It looks like maybe the treadmill borrowed from Mr. Buck before the surgery paid some dividends on helping to prepare her for her recovery.

But of course, the true highlight of the day for her was getting to talk to the children for the first time since Monday. We do miss them so. Hayden and Trevor's bowling plans at the Palace Lanes on Bellaire were foiled today by a private party so they enjoyed an outing to the Children's Museum with Aunt Carol and Grandma Denise while Grandma Carole had the pleasure of staying home with Miss Juliette. The kids are looking forward to this weekend when they get to see their big cousin Colin as Uncle Michael and Aunt Amy make the trek from Tyler to Houston for perhaps a day at the Downtown Aquarium or Discovery Green.

As I finish typing this LM is already sleeping peacefully thanks to the Benadryl. We pray for a quiet, restful night and another good day tomorrow. We thank everyone for continued support through prayer. Also, the comments on the blog and Facebook mean a lot to us being so far away. She is back in action on the Ipod and today began reading the posts and all the comments and that is good medicine, too.

And to Jennifer from Thousand Oaks, California, I, as Lisa Marie's husband and father of three young children who love and need their mother, owe you a special thank you for sharing your story with my wife through the colon cancer internet group and helping lead us to Dr. Sugarbaker. We feel so blesssed and hopeful right now and are confident that this is what we needed to do in order to have the joy of watching our children grow up and the two of us growing old together. Thank you from the bottom of my heart.

2009-07-24T09:00:00.002-05:00

We Busted Out

They tried to keep us in the ICU for another night but we would have none of that. Her orders for release were written early in the day Thursday without a bed being available. As the morning turned into afternoon with no sign of a transfer imminent, we began trying to work the system to expedite the process, going to the floor to which she was to be transferred to check on bed availablity, going to Admissions, getting Dr. Sugarbaker's office to place a request directly to Bed Management, etc. As afternoon turned into late evening we were beginning to get very apprehensive about the prospects of staying another night in a place we didn't need to be any longer. The staff that night was going to play hardball and strictly enforce the visiting hours even though the previous nights I was allowed to stay until she was asleep and comfortable.

Finally about 8:30 pm we were told that a bed had become available. We were all very happy to hear that. That happiness was short-lived though when we were also told that their new policy (which had just gone into effect last week) now prohibited all transfers after 8 pm due to data that showed that patients didn't tolerate a change in surroundings well after 8 pm. I assured them that Lisa Marie would most certainly fall into the minority category of patients who not only tolerated a change in surroundings after 8 pm well, but indeed would thrive with such a change. I'm not sure if it was the quick emotional swing of thinking you were going to be free at last from the ICU and having that snatched away or the pleasure that it seemed to bring the nurse when she told us we would not be going anywhere tonight and hopefully there would be a bed available tomorrow. After several spirited discussion with the ICU staff on these matters, I was told that my actions of trying to find her a room on my own and not going through the proper channels was totally inappropriate. Therefore, they were sending the supervisor of the nursing staff to tell me so. Fine, whatever.

When the supervisor got there, he explained the policy, blah, blah, blah, and I explained our side of things that if we couldn't get out of ICU, all Lisa Marie was asking was for me to be able to stay with her until she was asleep and he said that sounded reasonable. When he looked at the nurse and asked if that was acceptable, she said she doesn't like visitors in the room after hours when she was trying to assess her patients. Not wanting to tell the ICU staff how to run their unit he instead told me he would talk to a higher up and let me know if something could be worked out. Yeah, we'll hear from him again.

While I was out of the room having these discussions, it seemed to be getting pretty heated in Lisa Marie's room, too. The nurse decided to throw caution to the wind and gave her a little lip about being a difficult patient. That did not sit well with LM, which is surprising because she is usually very open to and accepting of such feedback (stop laughing, Vito). Well, the McLaughlin/Usher team was really starting to go into protective mode now. The nurse who we felt was disrespecting LM got it from both barrels from me and her, and lawyer brother Art was quietly preparing his strategy of insisting that the only way he was leaving tonight was if security was dragging him out. And if that happened, the only thing he was unsure of yet was what course of action he would pursue to create a public relations nightmare for these people.

Fortunately for all, it was about this time that the supervisor of nursing returned and said he had discussed it with the higher up and they decided to bend the rule and transfer her to a private room even though it was after 8 pm. Thank you Walter "Luke" Laukaitis for your efforts on our behalf.

It was about 9:30 pm now and we still had about another 2 and 1/2 hours left to listen to the snarky comments (thanks for the word, Carolyn) of the nurse about Lisa Marie's misplaced anxiety and "obvious non-trust of the nurses on this unit." (That adversarial relationship would have made for a fun night.) It was a long day but in the end we got what we wanted and we were able to enjoy a relatively stress-free night.

Today's primary achievement will be having Lisa Marie get on her feet and walk around the room (after sitting in a chair for about a half hour yesterday). Her pain remains manageable. Surprisingly she seems to have more pain in her shoulder than from the incision in her abdomen. This may be "referred pain" from some of the nerves leading from the areas the doctor worked on. She continues to have some itching from the pain medicine but Benadryl, lotion, and the bristles of a hairbrush help with that. (Art was sent to buy a hairbush in the gift shop after the length of my fingernails proved insufficient.). We continue to receive answers to prayers and thank everyone for their support. The surgeon came in for rounds this morning and again stated how successful he thought the procedure was. He also said that patients who show such a good response to chemotherapy (the remaining tumors appeared dead) usually have a very favorable prognosis. Again we are thankful and hopeful for that. It feels good to feel good about something.

2009-07-22T20:55:00.003-05:00

Pray for a Quiet Night

Please pray that all goes well tonight. We seem to have gotten a zombie nurse. She walks around without saying anything unless you talk to her first. She seems to have some head games going on, too. She cut us off the PCA pain pump without saying anything and then when I asked her if the pump was on (I only asked this because the display said "Press Start to Infuse"), she proceeded to press the start button and said, "Yes, it's on." She then walked out humming an eerie tune. It's already an hour and a half past the end of visiting hours so I'm just trying to lay low to see if I can delay getting booted out to be with Lisa Marie and keep an eye on things. Pray for a calm and uneventful night.

2009-07-22T10:20:00.002-05:00

The Road to Recovery

I couldn't stay with her in the ICU last night but Lisa Marie gave 2 thumbs up to the care that Darcy gave her. He helped her in every way she needed and always let her know exactly what he was going to do before he did it, which is very helpful when you're still a little disoriented from the surgery and you can't see without your glasses. When I arrived at the ICU in the morning, Lisa Marie provide a somewhat less glowing report of the day nurse but as the day went on they formed a more amicable bond so it wasn't too bad.

The physician who assisted Dr. Sugarbaker came by during rounds this morning. His name is Dr. Zappa. He again reiterated how well the surgery went. He said she had a very excellent response to the chemotherapy from MD Anderson. The peritoneal walls were very clean, all of the small bowel was in good condition with no evidence of disease. They didn't have to remove any of the small bowel. And for the anonymous person who asked about the ileostomy, that is correct. The dime-sized ink mark on her right side where they thought they might have to put it remains intact. They were able to successfully reconnect things and everything in that area should return to normal eventually, another blessing.

Did I mention that I married the most amazing person? She has already started doing her leg and breathing exercises and the doctors would like her to sit in a chair this afternoon to help ward off any clot issues. She also has some soreness in her shoulder from being strapped down like on a cross during surgery. But she asks for a little massage and rubbing and I am more than happy to oblige. It's hard to rest in the ICU but she is asleep now. Unfortunately, the helipad is right outside so we've got that noisy helicopter landing thing going for us it seems like at least once an hour. (Speak of the devil, make that at least twice an hour as another helicopter hovers outside our window.) And what about the 2 visitor limit? Is there a party going on in the next room?

We must both thank you again for all the prayers, not only during this surgery but for all of those who have been praying all along this journey. There are many things that will stick in my mind from this whole experience, but two really stand out right now.

The first is on 12/29/08 when we were in the hospital in Houston and they were trying to figure out what the source of all the pain was. After several days of trying unsuccessfuly, she finally had a colonoscopy. As she was waiting to wake up from the procedure, the doctor came out to me and said, "It looks like we've found the problem. It's a tumor." And I said, "OK, a tumor. So what does that mean?" And he said, "Well, usually, (short pause), it's not good." Two days later, on New Year's Eve, adenocarcinoma was confirmed.

The second thing I will always remember, is after her surgery yesterday when Dr. Sugarbaker came out to talk to us. He was describing the whole procedure, telling us how well he thought things went, writing down notes for us, drawing pictures, and I asked him about the condition of the known peritoneal implant tumor that he removed. And he said, "It looked (short pause) dead." I know we have a long way to go to claim complete and utter victory but right now, going from "Usually, it's not good" to "It looked dead" in 204 days feels pretty good. So for all the the saints and prayer warriors that we don't even know whose prayer lists we were on, don't forget the follow up and thank our God for answered prayers. And don't take us off those lists just yet. Grace and peace to you all, from the Washington Hospital Center Surgical ICU in the nation's capital.

2009-07-21T22:27:00.002-05:00

The following section of this post is courtesy of Art Usher, Lisa Marie's lawyer brother:

Lisa Marie is out of surgery. After the surgery was over the surgeon (Dr. Paul Sugarbaker) met with Sean and Art and discussed and wrote up aspects of the surgery. Dr. Sugarbaker reported that Lisa Marie’s color was good and that she was being transferred up to the 3G Surgical ICU while we were speaking.

We attempted to go see Lisa Marie immediately but she was just being admitted to the surgical ICU at the same time as the nurse shift change was occurring. Thus we were informed that it would probably be at least 45 minutes before we could schedule a visit with Lisa Marie.

Overall the surgery went well and the focus is on Lisa Marie surviving and recovering from the lengthy (7+ hour) procedure that she just underwent. Lisa Marie lost an estimated 1200 cc of blood and received three (3) units of blood and six (6) units of platelets. Lisa Marie’s platelet count was not good. Her incoming platelet count was low (90K) as a result of the 10 rounds of chemotherapy that she has already undergone. This number sank to 50K during the surgery, but went back up to 60K with the infusion of platelets. However, with respect to any complications related to embolisms and the like, Lisa Marie’s low platelet count makes the use of any blood thinner such as heparin problematic if not outright prohibited.

In no particular order Lisa Marie’s procedures today included the following:
1) Excision of tissue and walls;
2) Repair of incisional hernia;
3) Lysis and resection of adhesions (scar tissue apparently being a common place for cancer cells to reside);
4) Extensive exploratory for evidence of visible cancer cells;
5) Greater omentectomy;
6) Lesser omentectomy;
7) Oopherectomy;
8) Hysterectomy and bilateral ovaries and tubes;
9) Pelvic peritenectomy
10) Recto-sigmoid colon resectomy and anastomosis;
11) Intraoperative chemotherapy.

Dr. Sugarbaker was guardedly optimistic about Lisa Marie’s long term prospects, but made it clear that this post operative recovery time in the next week is the critical period upon which we need to be focused. Dr. Sugarbaker saw little macroscopic evidence of cancer. While he found (and removed) various nodules in the cul de sac region, such nodules did not appear to be viable cancer cells. Similarly, the tumor in Lisa Marie’s pelvic region appeared to be lifeless. All such tissue, however, was part of that removed. Similarly, the evidence of cancerous tissue on her left ovary was not sent to a pathologist as the ovaries were being removed.

More may be written later but Sean is anxious to go back and schedule a visit in the surgical ICU to see Lisa Marie for himself. We feel blessed by God that Lisa Marie is out of surgery and stable and that there was so little evidence of macroscopic cancer cells during the procedures.

Latest update as of 11:30 pm EDT:
I spent the last 3 hours or so with Lisa Marie in the ICU. Her breathing tube was removed around 10:30 pm which made communicating much easier. The lip reading and scribble on a clipboard was getting frustrating. She is in very good spirits considering everything. She received some Benadryl for itching from the pain medicine and was resting peacefully when I left. This was some day. May none of you or I ever have to go through it again.

Thanks again to all for the prayers, thoughts, well wishes, and general support through this whole ordeal. It has meant a lot to us, more than any of you could ever realize.

Special thanks to Art for being here with me for the whole thing.

And to Sally for the unexpected quick pop-in to the waiting room bearing hamburgers, fries, drinks, chips, double chunk chocolate chip cookies (yes!), and assorted candies. Who was that masked woman?

And also to Renee for the laptop that let me avoid having to do all this blogging on the Blackberry like the first time we did all this colon cancer surgery thing. My eyes thank you.

And now to bed. I've already had my sweet dream. I love you, honey.

2009-07-21T13:42:00.002-05:00

Lisa Marie remains stable. The nurse has reported the successful removal of the ovaries, uterus, gall bladder, and omentum (the last being a fatty apron of tissue within the peritoneal cavity for those of you unfamiliar with the word). The doctor is pleased with what he has seen so far and expects to begin intraperitoneal chemotherapy in 20-30 minutes. The intraperitoneal chemotherapy is expected to take about 90 minutes (like a cook book, pour heated liquid into cavity, carefully insert blender and stir for 1.5 hours). The nurse also reported that the doctor currently is hopeful that an ileostomy will not be necessary, but he will not know for sure until ready for reconnection. Still about 3-4 hours to go.

2009-07-21T11:29:00.002-05:00

She's doing well so far. The doctor said she had responded well to her previous chemo treatments as evidenced by limited spread of disease outside the known peritoneal implants. The small bowel looks good. Some disease on the left ovary. The uterus and ovaries are coming out as planned. Too early to tell if she will be getting an ileostomy yet. She is receiving some blood because her platelet count was borderline going in. Nothing unusual yet so she will be getting the chemotherapy bath (HIPEC) as planned. She will be going to ICU on completion of the procedure. More in a couple hours.

2009-07-21T10:14:00.002-05:00

The nurse just came out and said that all the prep work was complete (central line, breathing tube, etc.) and the actual procedure began about 20 minutes ago. They expect to provide an update on what the doctor saw inside in about another hour.

2009-07-21T08:10:00.004-05:00

Godspeed, My Love...

And thank you for your undeniable courage and unbelievable will to survive and be there for your family. We love you, we need you, and we will be forever grateful and in your debt for saying that the statistics quoted to us were unacceptable and instead taking this more difficult path toward an attempt to be cured.

She went into the OR at 9:05 am EDT looking at digital frame slide show pictures of her "three little birds" (a family favorite Bob Marley song reference). The first update from the OR is expected about 10:30 or 11. Stay tuned.

2009-07-19T11:33:00.000-05:00

300

Apparently this is my 300th blog post. Ideally, I would post something meaningful, but I'm on the blackberry in a car going 70 mph (Sean is driving) so the setting isn't conducive to inspirational thoughts.

We're on the way to the airport for our trip to DC. I check into the hospital tomorrow for some pre-op tests and such. I think the surgery is scheduled to start at 9 am Eastern on Tuesday and should last 9-11 hours. I assume Sean will be getting periodic updates on the progress and I've instructed him to post them here.

So keep us in your prayers. Sean and my brother Art will be with me at the hospital. We're hoping for what's called an R0 resection, which means no visible disease remaining. That pushes our stats up to 50% 5yr survival. Oh, and if you want to ask for some icing on the cake, I'm hoping not to end up with a temporary ileostomy. That's a 60-40 according to the surgeon, but really, we could live with that. Anything less than R0, not so much.

Hope to be back blogging for you soon.

LM

2009-07-09T21:05:00.002-05:00

Oh I wish I were an...
Oscar Mayer Weiner, that is what I truly want to be. Because if I were an Oscar Mayer Weiner, everyone would be in love with me.

Some people take their kids on vacations to fancy exotic places. We take our kids to the Strawberry Festival and to the Kroger parking lot to see a hot-dog shaped vehicle. Now that's a family memory you don't want to forget.
Smile big for the camera kids. This is a definite scrapbook moment. "Remember the day we hung out in a parking lot in the 100 degree heat and mom made us pose by the giant hot dog? "
Now that's classy.

2009-07-01T21:01:00.002-05:00

Cleared for takeoff

I have a million things in my head to post but am just so very, very tired these days. But I know that some of you are checking regularly for news, so I wanted to post something.

We met with the surgeon in DC on Monday and are now gearing up for surgery on July 21. We liked the surgeon and have confidence in him. But it's still just so scary at the end of the day. I know it's what I wanted and really represents my best/only potential for long term survival, but it's just hard to say you're happy or excited about a 12 hour surgery where they remove more organs than I can name. But onward we march nonetheless, making plans, getting ready. We're in good hands both physically and spiritually.

One of the hardest things to imagine is being away from the littles for so long. At least I can count on Hayden to tell me every detail of his day on the phone. If you've ever been on the phone with him, you know what I mean. How does a father who barely says 2 words on the phone end up with a son who never stops talking? Life's little ironies.

2009-06-17T10:05:00.000-05:00

Quotes from a 4-yr old...

From Trevor this morning:

"Mommy, can I pick out your clothes for work today. I promise I'll do a good job."

Looking at himself in mirror: "I'm very concerned...and very curious."

Curled up next to me in the big bed: "Mommy, I just love you."

2009-06-07T23:16:00.001-05:00

Me...

So people ask about the medical stuff, and I guess I haven't said much lately. It has seemed like more of the same. Work, home, chemo, repeat as necessary. I've been managing to work full time except for my chemo days. I finished my 8th chemo cycle last week. The side effects are somewhat cumulative, so it has been a little harder as we go along. The fatigue is a little worse, the neuropathy in my hands and feet is more significant. But overall, it's still all really manageable.

I guess I've been hesitant to write because I've been working on a plan and I still don't know if it will work out. I'm flying to Washington, DC at the end of the month to meet with a surgeon about the HIPEC surgery I mentioned a few times before. I've been on again and off again, but I know feel that it offers my best/only chance at some type of curative result. The best chance still only has a 25% success rate (in terms of 5-yr survival), but that's better than 8%.

So I'm on the schedule for surgery July 21st, tentatively. A bad scan between now and then could derail everything, but I can't go there. The surgery is rough, probably 12 hours in the OR and then 30 days recovery in the hospital in DC. You can read about the surgery and recovery here, on the surgeon's website. It's a little scary, lots of tubes. One of my internet friends refers to it as the MOAS - Mother Of All Surgeries. I'm guessing it will make my 3 c-sections look like a walk in the park.

That's it, the new plan. I'm probably in for a few more rounds of chemo before the surgery, but they have to stop about a month before the actual operation. Chemo inhibits your body's ability to heal and you need to be able to heal after the surgery. Then post-surgery, I'll probably have about 8 weeks recovery before resuming chemo for another 6 rounds.

Sean will likely stay with me in DC for a few weeks post-surgery. Then I think I'll send him home and some friends can come sit by my bedside and cater to my every whim.

Thanks as always for the kind notes, cards, packages, food, prayers that continue to bless us every day. Having you all here to support us through this journey means the world.

2009-06-05T23:10:00.000-05:00

Superfriends...

Trevor and Logan are the best of friends. They were born 13 days apart and Michele and I have a tendency to dress them like twins sometimes...
Can you guess how old they'll be this month?

They're having a little party with their preschool crew this weekend. Can you tell if they're excited or not? Logan's hair tells most of the story...

2009-06-04T22:57:00.000-05:00

Yes Y'all, We Live in Texas...

My chemo cycle is every other week, Wed - Fri infusion. So I usually lay pretty low on the Sat-Sun after my infusion. The fatigue isn't unbearable, but I try not to make any plans to leave the house for a few days. But there are exceptions to every rule. Like when the annual Pasadena Strawberry Festival falls on a chemo weekend. Times like that, you gotta suck it up and go.

The kids seriously look forward to this outing every year. This year Hayden's Sunday School teacher asked him if he went to the Rodeo Carnival and Hayden told him "No, we're saving up for the Strawberry Festival.". Anna came in from Budapest just for the Festival this year (not really, but we dragged her along). Michele just got her leg brace off and we conned her into going too. Needless to say, a splendid time was had by all. Did I mention the torrential downpour? We were not deterred.

There were scary roller coasters operated by even scarier traveling carnival workers:
1= Trevor (No Fear), 2= Logan (Perhaps a Little Fear), 3= Hayden (Pretending to be thrilled, but really ready for bigger adventures)

But as any East Texan knows, the real highlight of the Festival is the Pig Races. I took this picture of the boys waiting for the pigs to run, but when I downloaded it, I really enjoyed the guy/gal on the left side of the frame. Is that a sleeveless "Slayer" jean jacket? Seriously? We run with the best crowds.

Juliette is beyond delighted to be watching her second annual trip to the pig races. She really wasn't old enough to appreciate them last year.

And here they come spinning around the turn...those are some darn fast future slabs of bacon.

I know you're jealous. Don't worry, there's always room at the inn if you want to make a journey to Texas for next year's festival.

2009-06-02T22:36:00.005-05:00

Catching up...

I've been delinquent in posting, clearly I know. Occasionally, Sean asks what's going on in my life since he doesn't get updates on the internet anymore. So that's the message my friends, stop posting your life on the internet and you may have actual conversations in your house.

OK, back to your regularly scheduled program. We took the kids to Seaworld in San Antonio for Mother's Day. As you can see, we had a fun ride in the car.
We arrived early the first day for "Breakfast with Shamu". Unfortunately, Mom's clicking skills aren't what they used to be and I apparently paid for Breakfast with Shamu for sometime in late June. So we stood outside for a while until the park opened.

When the park opened, the first order of business was the Shamu coaster. Hayden rode it about 10 times in a row when he was 2 1/2. This was Trevor's first time. I think he liked it.

Feeding the dolphins is one of the best parts. They come right up to the kids. So if you can stomach holding the slimy fish, it's pretty cool.

Trevor wasn't so much for holding the slimy fish, but he's cute, so the dolphins came to visit him despite the lack of food.

Our second day, we visited the Seaworld water park. I would say a good time was had by all, but Juliette had a massive ear infection the whole trip and was running a high fever. She didn't eat the whole time and Day 2 was not her best moment. Poor thing. She's all better now.

Oh, and the nice folks at Seaworld fixed us up with a backstage tour of the beluga whales and dolphins to replace my mixed up attempt to reserve breakfast with Shamu. Ever been kissed by a Beluga whale? Super sweet animal, but nasty fish breath.

Hayden also finished another season of Little League. I remember his first season, I took pictures at every single practice and every single game. I think this season I didn't bust out the camera till the very last game. But check out the batting stance on my little Rattler. Is he ready to go pro? We are so glad to be done with t-ball and onto machine pitching.

2009-05-24T21:44:00.004-05:00

17 Months...

Sigh...precious age...goes by too fast...

Pictures here if the slideshow above doesn't work for you.

2009-05-24T11:23:00.002-05:00

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.

2009-05-19T23:36:00.002-05:00

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.

2009-04-26T19:32:00.003-05:00

I wonder...

If the people who make the Superman pajamas with the capes get a lot of product safety-related lawsuits...
Because if you give a kid a Superman logo and a cape, he's gonna think he can fly. There's gotta be a correlation between wearing these pajamas and trips to the ER.

2009-04-21T23:34:00.007-05:00

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.

2009-04-12T19:53:00.007-05:00

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.

Hope your Easter was a happy one.

2009-04-08T22:15:00.002-05:00

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.

2009-03-30T21:00:00.000-05:00

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.

2009-03-30T14:03:00.002-05:00

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.

2009-03-29T23:06:00.002-05:00

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.

2009-03-23T19:03:00.000-05:00

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.

2009-03-22T00:25:00.004-05:00

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.

2009-03-14T18:54:00.007-05:00

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"

2009-03-12T18:15:00.000-05:00

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.

2009-03-11T18:46:00.000-05:00

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.

2009-03-10T16:58:00.001-05:00

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.

2009-03-07T19:09:00.002-06:00

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."

2009-03-06T07:18:00.002-06:00

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.

2009-02-27T09:23:00.000-06:00

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.

2009-02-26T08:42:00.002-06:00

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.

2009-02-18T17:55:00.003-06:00

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.

2009-02-17T11:57:00.001-06:00

Raincheck...

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

2009-02-16T22:30:00.002-06:00

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.

2009-02-14T01:00:00.000-06:00

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.

2009-02-13T11:34:00.002-06:00

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.

2009-02-12T22:01:00.003-06:00

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.

2009-02-10T08:55:00.010-06:00

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!

2009-02-08T19:35:00.002-06:00

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.

2009-02-02T14:22:00.001-06:00

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?

2009-02-01T22:04:00.002-06:00

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.

2009-01-30T16:01:00.002-06:00

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?

2009-01-28T13:15:00.002-06:00

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.

2009-01-26T15:17:00.003-06:00

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?

2009-01-22T22:26:00.000-06:00

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.

2009-01-21T21:24:00.002-06:00

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.

2009-01-19T21:04:00.002-06:00

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.

2009-01-18T18:58:00.002-06:00

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.

2009-01-14T23:16:00.002-06:00

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.

2009-01-13T20:31:00.002-06:00

Breaking the Silence...

I appreciate everyone's respect as we took a little time to digest the situation. I can't say it isn't disturbing, but it doesn't change my resolve. So onward we march...

I saw the surgeon today for a follow-up appointment. He removed my staples (I thought there were 17, but I think it was actually 19 or 20). I've lost about 15-20 pounds from my normal weight and he made some recommendations to try to regain some weight before I start chemo.

He said that the healing from the surgery appears to be going well. He confirmed that the disfigurement (puckering, crookedness, lack of navel) in my scar was really a necessary product of the hernia that was challenging to repair. Down the road, post-chemo, post-colostomy reversal, it can be repaired/improved with another surgery that would put some type of mesh in my abdominal muscles, but that's pretty far down the road.

The surgeon was concerned/disappointed by the pathology results. He recommended that I see an oncologist at MD Anderson, which is still a work in progress. They have my records now and we're working on the next step. The surgeon also said that I still need to have the rest of my colon scoped to make sure there are no more polyps or tumors. Since I had a complete obstruction in my sigmoid colon, they were only able to scope a small portion of my colon in the hospital. So he recommended that in 2 weeks or so, after the stoma from my colostomy is securely healed in place, that they go in and scope the rest of me. Hopefully that is uneventful and doesn't lead to discoveries that would require additional surgeries.

I met with the oncologist who was assigned to me at the hospital. Even though I don't feel like I will pursue treatment through his office, I'm going to continue under his care till I have a relationship established with another oncologist. This doctor would like to put in a port for my chemo next week and have a PET scan done to check for any hotspots that may be malignant and require additional surgeries before my chemo. I'll probably stall on this so I can have it done by the facility that will ultimately be coordinating my treatment. The oncologist indicated he would recommend a 6 month course of chemo, with treatments for 3 days every 2 weeks. He said the treatment will be pretty aggressive and that I should assume that I'll lose my hair. So wig shopping we will go...

That's about all for now. Thanks for all the kind thoughts, prayers, notes, food, and gifts. It all means so much to us to be surrounded by all your love and support.

2009-01-08T22:01:00.002-06:00

The path...

The oncologist just called us with the pathology results. We really haven't had time to digest it all, and you can look up with stats as well as I can, but suffice it to say the news wasn't good.

The tumor was large, about 3 cm x 4 cm. It did not penetrate the lining of the bowel, but it was almost there. 9 out of the 19 lymph nodes biopsied showed malignancies. They were able to get a clean resection of the tumor itself, both the margins were negative for cancer.

The cancer cells themselves were grade 2 out of 4, so they weren't a very high grade.

The staging is T3N2. This means stage 3 with more than 4 lymph nodes involved.

I think I'm not really in the mood for rah-rah, good cheer, pick-me-up, enthusiastic comments right now. So it's OK to say nothing at all. Maybe we'll just all have a moment of silence.

2009-01-07T22:31:00.001-06:00

A First...

First full day at home.

First post-surgery shower.

First visit from the home-health nurse.

First time to show the kids my 17 staples (BTW, Dr. McApathetic, would have been nice if you'd left me with a belly button. I know "it wasn't cosmetic surgery", but still, you didn't have to leave me a total freak show).

First time to feed one of my babies a bottle of formula (hard, very, very, inexplicably heartbreaking, but at least I'm here to hold her).

First of many naps with Trevor in the big bed.

First totally unexpected care package from a girl from my high school -- Cosmo and nail polish -- I love Facebook.

All in all it was a good day. Still nothing from pathology. It's hard to have cancer and not know the staging or path forward. I'm a do-something, let's go, impatient kind of gal. So this will be a much-needed lesson in patience for me. We'll take it as it comes.

I haven't really said enough specifically about what a rock Sean has been through all this. It makes me verklempt just to think of how steady he has been by my side, being my voice to the doctors and nurses, being gentle when I didn't deserve it, not flinching at things that would have sent many a lesser man running for the door. It means so much to have someone you can completely trust, completely count on, a partner as if that word was enough. In sickness even more than in health. How did I get so lucky?

I watched a little Oprah today. She said that if you're breathing without a machine, you can start by being thankful for your breath. I can do so much more than breathe. I can walk and talk and type and hug and eat and laugh and make sarcastic comments about the hospital staff. So please don't feel sorry for me. I'm here surrounded by people I love and getting messages of love from so many dear people near and far. And I had at least 20 things make me smile today. And I'm looking forward to tomorrow. Hope you're doing the same.

LM

2009-01-06T22:05:00.000-06:00

Home sweet home...

Finally made it home. Waited for hours upon hours to be taken to have my central line removed (by the way, ouch!). Made it home around six and had 10 minutes at the dinner table with the kids before I collapsed.

Trevor was super cuddly, Juliette was a little under the weather, and Hayden is Mr. Independent. But the dogs? I'm guessing they were exiled from the big bed by Grandma Denise in my absence so they were absolutely overjoyed by my return. I think a few weeks of convalescence will be right up their alley. They've pretty much been rehearsing for this their whole lives.

Never thought I would get so much pleasure from laying my head on my own pillow. It's better than Vicodin. Sweet dreams.

LM

2009-01-06T11:05:00.000-06:00

E-mail...

Since I'll be out of work for a while, I've given my boss full access to my email. So please send all personal notes to my Yahoo address rather than my Chevron e-mail. Thanks.

LM

2009-01-05T19:06:00.000-06:00

Still no news from pathology. The waiting is hard. Sean made some phone calls to MD Anderson today to start the process for them to review all my records and give their chemo/treatment plan recommendation. Apparently, if you don't start your treatment there, they won't take you as a patient until you've finished your recommended treatment with you original hospital/physician. And while the oncologist here seems on his game and is very attentive, I'd just feel more comfortable with someone with more experience treating this particular type of cancer in someone my age.

They say that for the tumor to have gotten to the point it did (completely obstructing my colon), it would have been growing there for 10-15 years. It's just hard to think that this cancer has been there since before Sean and I started dating, before I ever carried any of my precious babies. Just lurking, growing. They say the kids need to start having colonoscopies in their mid-20s. Poor things. What a genetic gift, eh?

Today has been a little challenging. They took me off all my IV pain meds at once, trying to prep me for going home tomorrow. I went from total NPO at midnight, to trying to force down food and drink in an effort towards independence. After almost 2 weeks of not eating or drinking, I think it's going to take a little time to regain an appetite. And then there was the reality of the colostomy, which is really more reality than I wanted to deal with on a day with no Toradol or morphine.

But tomorrow's another day, hopefully a day where I can go home and the babies won't be scared of me. I've been sitting in this bed staring at pictures of their sweet faces just wishing I could hold them without all these wires in the way. Tomorrow, whatever else comes, will bring the cuddles I need.

LM

2009-01-04T04:05:00.000-06:00

Haven't slept a wink...

Despite a 12:30 am dose of Benadryl and a 1:30 am dose of Toradol. I'm not in substantial pain, just itchy, sweaty, and wide awake.

I even had the nurse draw my bloodwork at 1:30 am so she wouldn't have to wake me at 4 am like she usually does. Yet, here I lie, wide awake at 4 am.

I've been overwhelmed by everyone's generosity over the past week. The countless expressions of love and thoughtfulness, small and large, have meant so much to me. I know I couldn't do any of this without the support of my family and so many of you have expanded and redefined what it truly means to be a family. I feel rich in the truest sense to be blessed with so many lovely souls in my life. Thanks for being my backbone when I needed it most.

LM

2009-01-03T14:19:00.000-06:00

Weeping may endure for a night, but joy cometh in the morning.

She had a pretty rough night last night. The pain in her back was pretty significant and she couldn"t pump those pain killers in fast enough. It seems the hospital has this thing about people OD'ing so they only let you get a dose once every 10 minutes by pushing the button. Of course, that doesn"t mean you can't push the button 10 or 20 times every 10 minutes in the hope of receiving a bonus dose.

And if the pain wasn't bad enough, about 4:30 she began having a lot of difficulty breathing. They began to be concerned that the pneumothorax wasn't improving so they got out the old scalpel and were preparing to cut a hole in her side to stick a tube into her lung to prevent it from collapsing. Well that prospect didn't have much of a calming effect on her breathing. Fortunately before any of that happened they took another x-ray and decided that the pneumothorax was improving and they held off. Come to find out, the whole punctured lung thing was unnecessary since the assistant surgeon said that the second central line near her collar bone was done by the anesthiologist without the surgeon's knowledge and against the surgeons' wishes. Sounded like somebody got a good chewing out.

OK. That's the weeping endureth for a night part. The joy cometh in the morning part started about 8:30 am. About 30 minutes after receiving a shot of Toradol for pain and Benadryl for a rash that she usually seems to get after anesthesia, she suddenly said "I can breathe. It's not so hard anymore.". After about 4 hours of struggling to breathe and worrying about them having to cut you and poke a tube in your lung, that was indeed good news. Next, the surgical team came in again and provided another very positive report. They looked all around while they had her open and said again that the tumor they removed showed no signs of being attached to any other organ. The liver, spleen, ovaries, uterus, and rest of the colon and intestines all looked good. The lymph nodes they took out also looked normal. We still have to wait for the pathology results but it was joyful news after a night of weeping. The doctors seemed cautiously confident and very reassuring and that made us both feel very good.

Other joys since the sun came up include the removal of the NG tube, oxygen mask and catheter, and also that she stood up and walked to the chair in the room. Later on she intends to walk in the hall.

This now concludes my first post done entirely on a Blackberry. (Yes,the Blackberry issue was resolved. I'd rather not say how.). I don't think I'll ever become a Crackberry addict like some people I know who will remain nameless, but it is nice to be able to stay in touch with friends and family and read the many words of encouragement and support. And a belated Happy New Year to all.