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

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. 

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

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.

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

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

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.

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.

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.

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.

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?

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.

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.

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?

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.

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.

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.

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.

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.

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.