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.

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".

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.

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.

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?

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.

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

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.

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.

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.

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.

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.

Fever

Temperature = 102.7 F. Investigating.....

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!"

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.

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.

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.

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

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.

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.

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.

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.

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.

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.

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.

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.

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.

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

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.

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.

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."

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.

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...

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.