I know, I know, running behind....

We're happy, no ecstatic, to say that I had a clean PET scan about two weeks ago. Sorry for not posting it a bit sooner.

Shannon is getting back into soccer on Thursday nights. Yeaaaaahh!! (It's midnight and she's still out for a pint with the old timers from her team as I write.) There is some normalcy reentering our lives. Playing with the kids is getting much better each day. Eating is a little weird for me, smaller meals a little more often. I miss chugging a cold beer on a hot day. Small sacrifice I guess.So I guess it's about time to become a productive member of society again. Any suggestions?

At the time of the diagnosis last year, I was staying home with Molly 3 days a week and doing projects the rest of the time. With the addition of Dave, Kristine and Logan Nixon (cousins from the frigid North,) to the extended household, I've been relieved of my stay-at-home duties. Logan and Molly have a beautiful kind of tug-of-war relationship. Kristine has Ian and Miles developing their craft skills and their listening skills as well. (A work in progress.)

Actually I'm going to get started on a new adventure if my friend will still have me. I've been approached to design and see through the construction of a home for a friend who invested wisely in a little cottage across the street from the water in West Seattle. I have some sketches developed and a lot more to get down on paper. Most of you know that I've carried a passion for Architecture for.......ever.

Wish me luck.Keep in touch, everyone, and we will too.

Dave and Shannon

How Y'all doing?

Well, since Shannon seems to have gone an a literary hiatus, I guess it's my turn.....
Quick medical update goes like this: I'm 3 weeks into a 5 week run of chemo-therapy, should be my last. Nausea is a little worse this time around, good drugs but there are times when I just can't hold it down. Enough said. I will be getting a PET scan in a month or so, if we all hold our breath together we'll have good news. The nightime tube feeding went by the wayside last week, a bit earlier than expected. While pushing Molly up to The Dapple (local market) in her stroller, the damn thing just plain fell out....bloop....ten inches of tubing. I went to the surgeon's office the next morning and was met with stares of incredulity. They wanted to put it back in but I lobbied for freedom and they said o.k. Now it's up to me to get 2000 calories a day into my newly remodeled stomach. So far so good, I've been gaining ~1Lb. per week since the surgery and funny enough, I'm at 175 which is a good target weight to stay at. (For the first time in about 10 years.)

There is a bit of normalcy re-entering our lives. I did my first homeownerish project in a long time...put in a new garbage disposal downstairs and did a little weeding in the yard.

The boys are ready and waiting for summer vacation, they'll probably take swim lessons again, Ian has a week long sleep over YMCA camp in late July, he's excited as can be. I've been taking the boys to school most mornings, picking them up sometimes. Our cousin Kristine, her husband Dave and their 2-yr. old Logan moved in to the downstairs apt. and Kristine is taking excellent care of Molly 3 days/week. Molly and Logan have a great chemistry with the occasional toy induced swipe to the face. Molly is talking up a storm, it's especially cute when accompanied by a wagging finger. Such as "I no ready for night-night!!"

Shannon, ah, Shannon. Some of you got to know her much better over the last few months. I'm elated, wish the circumstances could have been different. So you see what I see in her. She's been my rock, my nurse, my day-to-day reality check and most importantly, my best friend. When this is all over, I owe her a big, long, relaxing vacation to someplace warm with very cold Margaritas.

Sorry for the five week bald spot in the blog. We'll try to maintain it a little better. Thank you to everybody for the cards, e-mails, messages and visits, they have been an integral part of seeing the light at the end of the tunnel.

All my love, Dave

Better Every Day

Things are really starting to feel like they are getting back to normal. Dave's energy is getting better each day. He still needs to take a couple of good naps (or just some down time) every day, but overall he's staying up longer and his naps are getting shorter. He's been eating really well too. His portions are small (as they will always be due to the new architecture of his esophagus/stomach), but he's eating frequently and eating all the same stuff I eat. His weight has been stable since he's been home from the hospital (he's lost close to 40 pounds since his diagnosis in November), and now his challenge will be to start eating some of those 1,000 calories he's getting from the tube feeding each night so we can start to phase that out (probably over the next month or so).

Although he still looks very thin (his cheekbones have become quite prominent), he is starting to lose that certain look that is really hard for me to describe. It's almost like his face looked partially paralyzed and he was very robotic and just kind of odd looking when he first got home from the hospital. I'm glad his sense of humor has returned because he didn't even get offended when I'd sing "Domo Arigato Mr. Roboto". Yes, it's true, I have a juvenile sense of humor (that's why I get along so well with the 5 and 6 year old set).

Dave drove his car for the first time in a couple months. That felt like a milestone. He's been off the pain meds for quite a while now, so there was no medical reason he couldn't drive, but he felt like his reaction time was slow and his movements were stiff. This morning, however, he offered to drive Miles to school and I felt totally comfortable taking him up on it. I don't think he'll be taking any solo roadtrips in the near future, but it's nice to know he can do some driving if he wants/needs to.

Now that things are getting better, we have the dreaded appointment with the oncologist on Thursday. I have a feeling Dave will be starting chemo within the week. We're both hoping he can take the chemo orally or go in for infusions rather than have the 24/7 pump he had last time (it makes showering and just about everything else a pain in the butt), but we'll have to wait and see. Wish us luck.

A better day...

The last couple days have been, dare I said it, pretty good. Dave has been out of bed more and has gone for some good walks with me and the kids (the library, Ian's school, the grocery store). It has helped that the weather has been more cooperative. He had a CT scan yesterday to check the fluid in his abdomen and get a look at how his swallow function is working (yum, more barium to drink). The surgeon was very pleased with the results. There are no new pockets of fluid, his lungs look great, and he's swallowing perfectly provided he's sitting or standing and not hunched over too much. His list of meds is finally starting to diminish. He's completely off pain meds, the doctor just took him off the oral antibiotics, and he'll get his last dose of IV antibiotics tomorrow morning. There's still a small wad of pills he is taking, but I figure each time we can say goodbye to one more drug, it's a small step in the right direction.

I think it was good for us to talk with his surgeon yesterday because we both got a chance to ask for a bit of a reality check about whether my expectations are reasonable and just how much time he should be out of bed versus the time he spends in bed. I think the hardest thing for me is that right now to him bed seems like a big reward. Go for a walk, reward yourself with a nap. Fold some laundry, take a nap. (I guess I should also say I've never been a napper and I like to stay up late. I remember being about 10 years old and reading that Margaret Thatcher sleeps for only about 4 hours a night and thinking I wanted to be just like her. Unfortunately, I can now say that I've had lots of four-hour nights lately and I pretty much just feel like crap in the morning.) The doctor said if Dave is up and moving around (sitting on the couch doesn't count) at least four separate times for at least 20 minutes each day, I should let him nap as much as he wants the rest of the time. Ok, message received. However, the interesting thing is that I have completely quit giving him "the look" when he's in bed, but he now seems more motivated to get out of bed on his own. Go figure.

That's the end of the Dave update. The next paragraphs are kid bits I can't help but share, so if all you want is the update on Dave, stop reading...right...now.

Last night when I told Ian it was time for a bath, he told me he wanted to be a stroker. I must have given him a quizzical look because then he asked me what the word is for someone who takes their clothes off in front of people. Of course, by this time I'm wondering where he's been picking this stuff up, but I went along with it and offered up the word stripper. A bit more dialogue and I realized he actually meant streaker, not stroker (I could use my imagination to come up with a definition for that) and not stripper. He asked me if I'd ever seen a real streaker. I told him that I hadn't, but that Dave and his brother John were at the last game the Mariners played in the Kingdome before it was imploded and a streaker went running across the field. Dave pipes in with, "Yeah, but he had a sock tied onto his wiener" (yes, proper me, I cringe every time someone uses an incorrect word to describe one's anatomy). About five minutes later, after getting Dave set up in bed with his IV, I find both Ian and Miles naked in the kitchen trying to attach socks to their penises (peni?) with sandwich ties. Never a dull moment.

Molly got her cast off on Monday. Pure trauma. I think the trauma of the saw and the repeat x-ray was far worse than breaking the bone in the first place. And if I thought we might get a break after getting the cast off, I was sadly mistaken. Molly had a slight fever for a couple days and then got a rash that covered her cheeks, arms, and legs. Turns out she has Fifth Disease, which sounds really nasty, but is a very common childhood virus that is typically quite mild and not contagious as soon as the rash appears (really).

Ian barfed at school today and was sent home after lunch. Actually, the nurse drove him home because I was at work and Dave still isn't driving. He seems totally fine. Mainly, he just enjoyed an afternoon on the couch watching a movie and then was back out on the playground this evening.

This morning when I dropped the kids off at school, the power door on our van was getting hung up on something. Miles looked at me and totally seriously said, "Mom, I think this car is getting pretty cruddy. You should list it on Craig's List." Miles and I have been diligently checking Craig's List for the last week or so looking for a bike for him.

Very slowly, I think things are starting to return to something resembling normal. We see the oncologist on Thursday, so we should know then how soon Dave might be starting more chemo. Dave actually read the last couple blog entries (I think he was nudged that way by a friend) and all the recent posts. I'm hopeful he'll take a whack at the keyboard SOON!

April 1

Wow, it's hard to believe it has been an entire week since I last posted an update. I've been kind of boycotting the blog (first unconsciously, then consciously) in hopes that Dave would sit down and type his own update. I keep casually mentioning it to him, pointing out that it's been several days since I've updated, but so far he hasn't shown a lot of interest. It's funny because he feels strongly about me posting regular updates on his blog, yet he hasn't been too keen on taking it over.

Dave's been home for 10 days now. Some days are pretty good and some days are hard. Our sister-in-law and niece were in town for the weekend, and it was really nice to have some help with the kids and with Dave (thanks again Lori and Erin). I think having people in our house encouraged him to stay out of bed more and to do a little more walking and engaging than he otherwise might have done.

Tonight, as I was flushing his IV and getting ready to start his antibiotics, he commented that I must be really lonely. I don't think I've cried for weeks, but I kind of lost it when he said that because, yes, I am lonely. I'm very lonely. But, unfortunately, it's not the kind of lonely that goes away by having a drink with a friend. I am lonely for Dave. I'm tired of sharing my bed, but feeling like I'm sleeping alone. I'm tired of feeling like a single parent when he's at home. I'm tired of putting on the brave face when it's not how I feel. I'm tired of updating his blog when he doesn't even care to read it. Most of all, I'm just tired.

Oh, here's my good news: After four weeks, Molly gets her sassy purple cast off tomorrow morning. Anytime someone asks her when she'll get it off she says, "Two weeks, cast off, two weeks." I think she'll be sorry to see it go. I sure won't. I still have a fat lip from getting backhanded by her last week. I can't even remember what I did that warranted the cast to the face, but I'm sure it was something really terrible like trying to change her diaper. Anyway, that's the fat left side of my lip; the fat right side of my lip is from her big head jumping right into my face. No need for collagen here...

Well, that's it. I'll keep working on Dave to get back on the computer one of these days.

Home!

Dave made it home on Friday. Hurray! It's hard to put to words how it feels to have him home. It's great and it's a little frustrating - for him and for me. For starters, when we were leaving the hospital, he asked for a wheelchair. After I gave him the disapproving eye (you know, the one that speaks volumes without you saying a single thing), he agreed to walk to the car. My mantra for him (which I'm sure he's probably sick of hearing me say and which sounds really cliche) is that he needs to be an active participant in his healing. He needs to get out of bed and get back to living his life. In fact, the line that keeps running through my head is from one of my favorite movies, Shawshank Redemption, when Andy says you have to get busy living or get busy dying. Well, I'm ready for Dave to get busy living because I'm sure as hell not going to let him take this lying down. Every time I see him lying in bed during the day I feel like a little piece of him feeling defeated. Well, I am here to kick his butt into shape.

I know he is truly glad to be back home. I also know it's more work than being in the hospital. In the hospital all he had to do was push his nurse call button and they'd bring whatever he needed. If he got out of bed a few times each day and walked a lap or two around the ward, it felt like an accomplishment. At home, I have much higher expectations. Not that I think he should be running a marathon, but I definitely stay on his case to keep him out of bed more than he's in bed.

The medical stuff seems mostly routine. He's mainly off the pain meds now. He still has a couple pills that get crushed up and put in his J-tube. He's on one antibiotic that I give him twice a day through his IV line. He still gets night feedings (back in the not-so-long-ago days of nursing babies during the night I sure never thought I'd be giving my husband night feedings). Anyway, that stuff all seems totally doable, and I think our biggest challenge is going to be finding the motivation to get up, get busy, and get living. My strategy is to be as pesky and annoying as possible so he'll want to get out of the house as often as possible. Kidding, of course.

So, that's it. We're doing fine. Every day there's some struggle and some accomplishment. (Wow, I really have to go to bed. For some reason, while writing that last sentence a Donny & Marie song just popped into my head. Scary.)

Can it be true?

As of this evening, it still sounds like tomorrow is still the big day for Dave's release. Everything looked good with yesterday's CT scan, but the doctor has ordered another swallow test for tomorrow morning (apparently there's a little glitch with food pooling in the bottom of his stomach and then his stomach not completely emptying). It didn't sound like it would potentially keep him in the hospital any longer, but that the doctor just wants a look to see if there's any fine tuning they can do.

He also got the dreaded back drain pulled out today. He remarked on how comfortable it is to lay in his bed now. Hurray! I'm stoked to think he'll be coming home with no drains. On Monday, it will be six weeks since his surgery, so I know he's done a lot more internal healing during these last three weeks he spent in the hospital. He'll also be coming home with the PICC line so he can stay on IV antibiotics for the next two weeks. The feeding tube stays as well as he'll need to get 1,000 calories of "food" for 10 hours each night.

Although he's been given the green light on the soft food diet, he hasn't had much of an appetite and has also been feeling quite nauseous (a side effect of the antibiotics, we're told). It also doesn't help that if he feels like eating, he places an order with the hospital room service and then has to wait 45 minutes to an hour for his food to arrive. By the time the food shows up, he's tired and not much interested in eating. I'm sure that will change when he's home. I'll be hitting the grocery store early tomorrow morning for all his favorite soft foods - cottage cheese, canned peaches, oatmeal, pudding - yum yum! Ooh, maybe I'll make him a Ben & Jerry's milkshake too. The doctors did say to focus on calories right now and not to worry so much about nutrition since he's getting that via the tube.

Well, that's it (gotta go dish up some Ben & Jerry's). I think my days as a blogger are numbered and Dave will be getting back online soon.

Coming home soon, I think...

As I suspected, Dave's release date has been pushed back again. It sounds like he should be released by Friday. This time, I have a feeling he really will be released, although the thought has occurred to me that maybe they just like him and don't want to let him go. Actually, there are a couple nurses that are driving him batty. He has taken to actively mocking them as soon as they turn their backs. I'm hoping he gets released before they catch him making fun of them or I shiver to think what they might do to him.

To my trained and familiar eye, Dave has seemed more himself (he's getting his "Dave-ness" back) in the last two days than anytime since his surgery. He's still easily fatigued and groggy at times, but he's smiling and showing more emotion than he had been for weeks.

He had a CT scan yesterday to check the fluid they are draining (the dreaded back drain). The doctors report that everything looks good and there was no sign of infection in the fluid. When he comes home, he'll still be on IV antibiotics for two weeks to make sure the staph infection is completely cleared up. He's off the IV feeding and back on tube feeding (another step in the right direction), and he's back on the full liquid/soft food diet. He actually got to eat scrambled eggs this morning (the first "solid" food in about 3 weeks).

It sounds like the oncologist is going to give him a few more weeks of recovery before starting the next round of chemo the day after Easter or thereabouts.

All in all it feels like we're heading in the right direction.

Now I just can't help closing with one of the lighter moments from my day. For tonight's bedtime story Ian read The Ugly Duckling to Miles and me. At the end, they were both expressing how they felt sad that the other ducks were so mean to the ugly duckling. Ian said, "If I met that duck, I'd tell him he was beautiful, not ugly." Miles, not one to mince words, said, "I'd say, 'You're ugly. Want to be my friend anyway?'" And on that note, goodnight.

Happy St. Patrick's Day

There's not much new to say. Overall, it's been a pretty uneventful couple of days (no complaints here). Dave is still pretty miserable with the new drain they put in his back. They put him back on the morphine, but fortunately it was just for one day and he mainly seemed tired and groggy and not as loopy as before.

Finally, after a couple days of complaining about the discomfort, they put an extension on the drain to get some of the bulk of it around to his side rather than pinned underneath him.

He has graduated from clear liquids to the full liquid diet, so he can now have small amounts of cream soups, milkshakes, yogurt, etc. He has to take it slowly to make sure he doesn't have any nausea and that he doesn't start accumulating more fluid in his abdomen. (And, while I'm thinking about it, thank you Paul for every one of your posts. It's really reassuring to me - and others have mentioned it as well - to know you've been through this and that none of these complications are uncommon when recovering from this surgery.)

Dave's doctor said he might be coming home on Tuesday. A piece of me wonders if they are just trying to let him down gently by pushing his release back a day or two at a time rather than saying it will be another week or so. At this point, I guess it will really depend on how he tolerates the full liquid diet and when they can pull the drain out of his back.

It didn't feel like St. Patrick's Day without Dave at home. For as long as I've known him, we've celebrated St. Paddy's Day (usually with my parents) with a traditional Irish dinner of corned beef, cabbage, and grossly overcooked vegetables. I always get out my bent spoon and pour a couple Black & Tans. Tonight, a really great friend came over and cooked me a fantastic dinner, but I couldn't help thinking about Dave and wondering if his dinner consisted of green Jello. As we sat down to dinner, Elise and I put our mugs of Guinness together in a toast to Dave getting home and getting healthy.

More and more and more fluid

Just when I think Dave is getting the upper hand on this thing, something else comes along. He had another CT scan yesterday to check on the pocket of fluid they've been draining all week. The doctors were pleased with those results, but then found a disparate pocket of fluid somewhere towards his lower back. He spent the afternoon with the intervention radiologist so they could put in yet another drain. Unfortunately, this drain exits out his back - not very comfortable when you spend the majority of your days and nights on your back.

The doctor hasn't said if this will push back the Monday release we were hoping for, but if his stay is being extended it's probably good they haven't mentioned it given his mental and emotional state the past few days. I know he feels like the four walls of his room are closing in on him. I want to steal him away and head for the sand and salt water.

Oh, and a few people have asked how the inimitable Miss Molly McGeoy is doing with her broken arm. Let's just say she's discovered a quick and effective way to make her brothers squeal. Her cast doubles as a mighty effective club, particularly when used on unsuspecting brothers' heads.

I just went down the hall to check on Ian because I could hear him whistling (he whistles exactly like Dave) in his room a full hour and a half after he went to bed. He was musing about how cards people send that say, "Get Well Soon" seem kind of rude and demanding because they don't include "please" or "thank you".

When I see Dave in the morning, I'll let him know how many people are hoping for him to please get well soon (and thanks).

Home Soon

It sounds like Dave's release date (maybe that's not the right word, somehow "release" sounds like he's getting out of prison; of course, I think that's probably how he has started to feel about his latest stay) could be Monday. Dave was quite disappointed to hear he'd be spending another weekend in isolation (another prison term?), but I really think they are trying to be absolutely sure they won't be seeing him there again after they cut him loose this time. He said he's counting down the seconds until Monday. Sure enough, when I walked in his room this morning he appeared to be staring at the clock.

He seems to be feeling a lot better and is certainly looking much better, which I think makes it that much harder to be stuck there for close to another week. Now that he is better able to stay awake for longer stretches of time, I've started bringing him a new movie to watch each day. Today I brought the movie "Amelie". He was watching it when the kids called with their goodnights. Does anyone have any good (preferably uplifting) movie recommendations?

I brought Molly to see Dave yesterday. She asks about him constantly. Almost every morning she gets dressed, including getting her shoes and jacket on (amazing how much better the two-year old is at getting dressed than her older brothers), and then says, "Molly ready go see Daddy at hopala now." Most days I can appease her by putting a full-screen picture of Dave on the computer. Yesterday, she was really happy to see him in person and gave him lots of hugs and kisses. I know it did them both a ton of good.

I brought Ian by this afternoon and he gave Dave a nice laser-pointer demonstration on partial and total eclipses. Tonight all three kids were lamenting how they miss their dad (and it wasn't even after I yelled at them or anything - really!). I actually think the times they miss him the most are when we are having nice family time - having dinner, playing a game, or something like that.

That's about it. For those of you who tell me it makes you sad to read the blog, take heart. Things are ok. We are ok. Dave is going to be ok.

Success!

Day by day, I think things are starting to look up. Dave has seemed a little stronger and little more engaged each of the last few days. I've been trying to spend some time at the hospital each morning since that seems to be his best time. He's usually up for getting out of bed and taking a walk around the ward (2 or 3 laps), and then he can stay sitting up in a chair long enough to beat me at a game of cribbage (he's been getting insanely good hands, and for once I don't mind losing - too much).

The lytic they've been pushing into his drainage tube in an attempt to break through membranes and drain some of the fluid that has been pooled in his abdomen was a success. On Friday afternoon, they pushed 50 cc's of lytic and two hours later retrieved 250 cc's (they cap the drain and give it a couple hours to do its thing). Yesterday, they pushed another 50 and got close to 200 back. When I left the hospital this evening, they IR doctor was pushing another 50 and said there's just a small pocket of fluid remaining which they hoped to drain tonight. Finally - something that feels like a success!

We still haven't heard anything about a possible release date, but I'm hoping it will be sometime this week.

Friday

Things are still moving slowly along. I got to the hospital early this morning since that seems to be Dave's most awake and alert time (it's certainly not mine). While I was there he got his second JP drain removed (this was the last of the two drains placed during surgery on the 12th). I guess that's progress. He still has the drain that was inserted when he was re-admitted last Friday, although the volume from that drain has dropped off as well. As of this morning, the doctors were still trying to figure out what to do with the septated (separated by membranes) pocket of fluid that still remains. This afternoon they decided to push some concoction (can't remember the name of the drug, so concoction is the best I can do) into the drain in an attempt to break up the membranes and drain some of the fluid. The risk of that approach is that the fluid they push in may not come back out and he then has a larger pocket of fluid. In addition, the pressure from the fluid is what caused him so much pain in the first place, so there was some concern over whether that might happen again.

Dave's mom left town this evening, so I didn't make it back to the hospital tonight, but I talked to him on the phone a little bit ago and it sounded like pretty good news so far. He said there has been some fluid draining, so hopefully the new approach is going to break through some walls tonight.

In the meantime, there hasn't been any talk of when he might get discharged. The big challenge now is to keep his spirits up while he's stuck in the hospital. Speaking of which, he can have visitors even though he's in what they consider "isolation". The hospital isn't concerned about the staph being contagious to visitors - the concern is about contagion to other post-op patients with compromised immune systems so they don't want it carried from one patient's room to the common areas of the hospital. Before entering his room, visitors need to put on a gown and gloves and put any personal items in a hospital bag (or leave them outside the room). Dave can also leave his room to take short walks around the ward, but when he leaves the room he needs to put on a fresh gown and gloves, while visitors need to take their gown and gloves off and leave them inside his room. So all you local people who have asked about visiting, please give me a call (cel phone is 206.841.2240) and I'll let you know if he's up for a visitor.

I swear in the few weeks Dave's been out of commission, things are falling apart at our house. The pocket door in our bathroom completely dropped off the track, the bottom of one of Miles' dresser drawers broke and fell through, the hot water heater might be on the fritz. Nothing too major, but it reminds me of all the little things Dave usually just takes care of. It reminded me of when I was about 7 months pregnant with Ian and I asked Dave to hang some shelves in our walk-in closet. In the spirit of trying to make me feel empowered (or at least that's what he'd have me believe), he told me to do it myself. He brought me his drill, 4-foot level, tape measure, apron (which barely fit around my gargantuan mid-section), and a few other supplies, and then I think he went on to do something more important like drink a beer and watch baseball (although I'm sure he'd beg to differ). Anyway, I thought, "Fine, I'll show him..." and got to work hanging my precious shelves. I think I got one shelf hung and then was semi-balancing on a chair, holding the second shelf, while trying to drill a hole, when the whole thing came crashing down and landed on my head. A short battle ensued between my stoic Irish upbringing and my pregnancy-induced hormones, and I started crying like a baby. (I like to pretend I'm Italian now anyway - proudly wearing my emotions on my sleeve.)

When Dave heard the crash and came in to find me crying in a heap on the floor, he felt really awful, but he had this epiphany that it wasn't about hanging the shelves - it was that I wanted him to be my big strong man. So here I sit and wait for my big strong man to get home and get well.

More hallucinations, more fluid

I think I have writer's block tonight. I have about a thousand thoughts running through my head and I'm having trouble putting any of them into words. Here goes nothing... It was really hard seeing Dave yesterday (emotionally one of my worst days). It reminded me a lot of his first days in the ICU. He was not very lucid and for the first time he looked very small and very frail in the hospital bed. He's still having vivid sleep deprivation and drug-induced dreams and then has trouble separating his dreams from reality. He's had a couple different dreams where bad things are happening to the kids and then he's relieved when I assure him that the kids are accounted for and are ok. I usually feel very strong, but I couldn't stop crying when I walked out of his room yesterday.

Quite frankly, I just couldn't face going to the hospital first thing this morning, so I ran some errands and spent a bit of time at the library. I also bought an electric razor for Dave since the hair on his face was starting to outgrow the hair on his head. Thankfully, he was more tuned in to reality when I was there today. I brought some cards people had sent over the past couple days and he was happy to have me read those to him. I'll continue to bring him copies of the posts people leave on the blog as he always likes to hear those as well.

I had a long conversation with the surgeon this evening. The drain they inserted on Friday night seems to have done its job and the drainage has really slowed down. However (and this is a big however), there's another fairly sizable pocket of fluid which has accumulated in his abdomen and which is not being relieved by the new drain. They sent him back down to the intervention radiologist to insert yet another drain to get rid of that fluid. Unfortunately, they were not able to get at the bulk of the fluid. The way the surgeon described it to ye ol' layperson after I gave him the "huh, what does that mean?" was to liken the fluid pocket to the segments of a grapefruit. They could perforate one segment and drain it, but the other segments contain discreet pockets of fluid and it's just not practical (not to mention that it was painful for Dave) for them to drain each one individually. The options now are to either wait and see if his body will reabsorb the fluid over time or go back in to his abdomen surgically and drain the whole area. At this point, because his white blood cel count has dropped and his fever is down, leaving them less concerned about possible infection in that fluid, they are taking the conservative "wait and see" approach.

We embarked on this whole adventure with an admittedly aggressive surgeon to aggressively kick the ass of an aggressive cancer, but at this point I'm feeling pretty good with conservative.

What next?

Today was another fun-filled day. Molly was goofing around with the boys last night and fell over the back of the couch. She cried a little bit and complained about her hand, but it didn't seem too serious at the time. However, she woke up crying about 79 times (at least it felt like 79, but maybe it was actually only 59 times) last night and I knew something was definitely wrong. She was still favoring her hand this morning, so we headed for an x-ray and a visit to the pediatrician (and thank goodness Miles wasn't with us so he could kill the nurse Kathy). Sure enough, Molly has a fracture on her radius close to the wrist. After a visit to the orthopedist, she's now sporting a lovely purple cast. I wish I could say it has slowed her down a little bit, but about an hour after getting her cast on, I caught her pushing her Big Wheel up our steep driveway for a one-handed thrill ride.

I wish I could say Dave is doing much better, but it seems like slow progress or maybe no progress at all. Ok, it actually feels like another giant step backwards. I don't even know where to begin. They drained the fluid that had built up and was causing so much pain. They'll continue to have that drain hooked up to suction to drain anything that is still leaking in that area. He has also developed mild pneumonia and there were signs of infection in the fluid they are draining, so he's been on IV antibiotics since Friday night. It appears the fluid was leaking from his thoracic duct, so I'm told it should take care of itself once they dry the area out. However, drying the area out means no more eating or drinking for Dave either by mouth or by tube feedings (not that I think tube feeding qualifies as either eating or drinking). They put a PICC line back in (he had one during his chemo) to keep him nutrified and hydrated.

I had promised Molly we could go visit Daddy in the hospital (hopala as she calls it) after we finished up with her appointments, so we headed over to Swedish. We were stopped cold at the door of his room. Now he also has a staph infection at the site of one of his JP drains, so they have him in isolation. They've got him on some new IV antibiotics as the staph bacteria is apparently resistant to the other antibiotics they were using. I can go see him in the morning, but I'll have to don full combat gear - gown, mask, gloves, etc - before I can go in his room. The nurse said they'll probably have him in isolation through the entire 10-day course of antibiotics. Nice.

He's still on the heavy-duty pain meds so he's not always totally lucid. I think it's the morphine that has him really wiggy. He called tonight and said he was confused about the scale of things, like they've got some extra large washcloths and chairs in his room. I didn't realize he was higher than a kite until he said something about how his teeth had been really huge, but now they got really small and it was ok. All I could think about was that Jefferson Airplane song, White Rabbit, "One pill makes you larger and one pill makes you small..." And, the funny thing is that the boys were watching Alice in Wonderland yesterday and when I walked in the room and saw the "hookah smoking caterpillar" I realized I've read the book, but had never seen the movie. I love the song White Rabbit, but Dave really hates it.

Well, that's about it. Tomorrow is another day and hopefully it can't be any worse than today...

And now a setback...

I think I can safely say that today was the second longest day of my life (with the day of Dave's surgery taking a hands-down first place). We had an appointment at the surgeon's office at 10:30 this morning and I just got home (after midnight). The appointment was mainly just to check in, hopefully get one of his drains removed, and to get a chest x-ray to see how his lung capacity was looking. At some point last night, his pain starting increasing and was becoming more difficult to manage. By the time we got to the surgeon's office he could barely walk and I had to take him in a wheelchair for his chest x-ray. The surgeon was totally perplexed, and as we sat in his office Dave's condition was visibly and quickly deteriorating. They said his stomach looked distended, his oxygen level was too low, he started vomiting, and he was in obvious pain. While it wasn't pleasant, I was glad the surgeon could see firsthand Dave's condition. He decided to have him admitted to the hospital right away.

The next 12 hours are kind of a blur of tests and more tests. Lots of blood draws, fluid samples from each of his drains, a urine sample, another chest x-ray, and then a CT scan of his chest, abdomen, and pelvis. They finally determined that there was a lot of fluid building up near his kidneys, although the source and nature of the fluid is still unclear. His white blood cell count is also elevated, so he's fighting an infection of some kind which may or may not be related to the fluid.

They paged the intervention radiologist to come right away to drain the fluid, so instead of losing one of the drains today, he gained another (right between two of his ribs-ouch!). They drained almost a 1/2 liter of fluid and will leave the drain in to continue to clean out the area. We may not know for a few days exactly what the source of leak was and whether that was the source of the infection. Either way, it looks like he's back at Swedish for another 5 or 6 days.

It feels like a major setback after he'd been doing so well the last couple of days, however I know it's where he needs to be right now.

A Little Better Each Day

Dave has been home from the hospital for a full week. He's doing amazingly well (you didn't expect anything less, right?). I started to get a little bit concerned on Tuesday that he was spending too much time in bed (wow, that makes me sound pretty hard core). I think it would be really easy to start getting a little bit depressed after undergoing such major surgery. Now I'm not obtuse enough to think there's any real comparison between his surgery and the three c-sections I had, but I do remember that when I was tired and I hurt and I just wanted to be in bed, the thing that always made me feel better was to force myself to get up and move around and to get out of the house and get some fresh air. I do have his doctor's blessing in trying to get him up and moving around. The doctor said the more he's moving around and walking, the faster he'll recover. When I laid those thoughts out for him, instead of smacking me down as I might have done if I were him, he seems to have taken it to heart.

Yesterday, he got up and took a shower (after being sufficiently wrapped in half a box of Saran Wrap to cover his drains and j-tube) and then came with me to pick Miles up from school. We took Miles out for an ice cream cone and then ran some errands (important stuff like picking up prescriptions and going to Tully's for a latte). We also stopped by the surgeon's office since we thought one of Dave's incisions was starting to look funky. He's got a slight local infection on his neck incision, but for now we just need to keep it clean and put antibiotic ointment on it. We'll be going back in tomorrow for a chest x-ray and hopefully to get one of his drains removed. And I'm really, really excited that they said I no longer need to give him meds at 2:00 am. Now if I could just get Molly to sleep through the night... Actually, Dave will still probably wake me up at least once a night for his pain meds, but I'm only too happy to retire the 2:00 vibrating cel phone alarm.

Today, we had a nice, low-key day. Ian was in school until 5:15 (he does drama and Tae Kwon Do right after school), Miles had a playdate with his best friend Liam, and Molly had her first-ever playdate (an all-day one, too!) with our new friend Tara and her two boys, Cooper and Oscar. (Tara is the photographer who did the family pictures you see on this blog. She's really incredible and a wonderfully talented family photographer. You can check out her work at www.taraclarkphotography.com and if you want to see a slideshow of all the pictures she took for our family before Dave's surgery it's at www.taraclarkphotography.com/mcgeoy .)

That's really about all. Life is slowly starting to feel a little bit more normal. Dave's sister Michele came into town tonight and I showed her how to take care of Dave's meds so I can spend some good time out with the kids this weekend. Off to bed now.

Tuesday

The last couple days have been pretty much more of the same. Another sleepless night last night thanks to Molly who woke up screaming 5 times and the POS feeding pump which crapped out again at 4 am. I had to page the on-call nurse and we finally got it running again. I swear I was about to lob that thing off our deck into the ravine below (except I probably would have hit a homeless person in the head and then I would have felt bad). Poor Dave got to endure my seldom-used trucker vocabulary in full force (so glad the kids were sound asleep). Fortunately, the company that provided the pump had a new one couriered to us tonight (we told them he starts his feeding at 10 pm, so the courier was knocking on the door at 9:59 tonight).

I had to take Miles and Molly for check-ups (including immunizations) today. It had been a while since I'd had to bring the kids for shots since Dave had usually been doing that. I knew it was going to be rough as both Miles and Ian have always been totally and completely irrational about shots. When Miles heard he needed two shots he bolted from the exam room and went screaming down the hall in nothing but his Spiderman underpants. I have no idea where he thought he'd go, but a nurse headed him off and carried him kicking and screaming back into the room. All attempts at reasoning with him failed miserably, as did attempted bribery. It finally took me and two nurses to pin him down for two quick shots. I think poor Molly thought he was being murdered (as I'm sure everyone else in the pediatrician's office did as well). When it was finally over and I suggested it couldn't have been as bad as he expected, he said it was worse and he was going to find Kathy (the nurse) and kill her. Oh, and then he went through this whole production of dragging his leg behind him all the way out of the office.

Ok, I realize this blog is really about Dave and not the kids, but the simple fact that I now have things to say about the kids is a good indication that Dave is doing better every day, and my life is starting to feel slightly more normal. If we get some decent weather, I want to get him outside to do some walking. He's been able to eat a bit more food every day. He's still on a very soft food diet - pureed soups, pudding, yogurt, etc - and is probably taking in less than 500 calories a day by mouth (plus he gets 1,000 calories each night with the feeding tube).

He's also spending more time out of bed and interacting more with the kids. It hurts him to move his head because of the big incision running down the side of his neck, so he seems to be always staring straight ahead. Yesterday, Ian asked, "Dad, why do you always look like that now?" Dave asked him what he meant and Ian gave this bug-eyed, stiff-necked pose. It was pretty comical and I'm happy to say Dave is regaining some of his humor.

Thanks to those of you who called and offered to have a kid (or kids) over for playdates, and those of you who called to check in on my mental status. I'm doing fine, really. I'm tired, but I'm not about to crack up (any more than usual, that is). I know we'll get through this and will emerge on the other side with our smiles still intact.

Now that it's safely behind me, I can honestly say that Friday night was one of the toughest and most sleepless nights I've ever had (and having three kids, I've certainly had plenty of sleepless nights). I didn't post anything yesterday because I thought it would be way too whiny and negative.

I had high hopes of giving Dave his meds at midnight and then sleeping for a few hours. Not a chance. The pump attached to his feeding tube stopped working (I could tell right away because it's so loud when it's running). The monitor was frozen and the keypad wouldn't work. I had to shut it down completely and reprogram it with the dose and the rate and start it again - 5 times over the next 4 hours. Turns out it was a problem with the battery not being charged fully which seems to have resolved itself now.

I know I fell asleep at least once because I woke up to the sound of Dave vomiting nasty bile on the bed and carpet (sorry if this is too descriptive for some of you, and sorry Dave if this is TMI). I spent the next 30 minutes cleaning and scrubbing. Then it was time for more meds and on and on until Molly came into our bedroom at 7 am insisting that I get up (and, obviously, I can't just pretend I'm in a deep sleep knowing Dave will get up with her which is what I used to do). It reminded me a lot of being home from the hospital with a new baby those first few weeks - except back then I had Dave to wake up with me and help with the nighttime burping and diaper changing. These nighttime tasks feel very lonely as Dave sleeps through some amount of it (for which I'm thankful) and is very groggy. I will say that when he's awake, he never fails to thank me for taking care of him.

I hope it doesn't sound like I'm bitching because that's really not how I feel. Taking care of Dave doesn't feel like a burden at all - it just feels like what needs to be done to get him to the next phase of his recovery. I really can't say enough times how brave he's been through all of this. He hardly ever complains about what he's going through, and I see firsthand every single day how much it sucks. I can't think of any better way to describe it than "it sucks". In fact, I don't think I've ever even said that and it feels rather cathartic just to say it. Yes, it sucks that Dave has cancer. It sucks big.

Ok, enough of my free therapy. Last night was much better than Friday night. I've gotten more competent with the tubes and hoses and drains and crushing pills for the j-tube, and so on.

We left the house for Dave's first outing today. It was to a big recliner store to see if he'd be more comfortable sleeping in a recliner. No dice. Then, we went to Sleep Country to check out adjustable beds, which seem like the better option. We had dropped Dave's sister Bessie off at Ikea with all the kids and when we went back there to pick them up, I parked in a disabled parking spot (there was no way Dave could walk the 9 miles from the regular Ikea parking to the store entrance). I figured if ever there was a time I felt justified parking in a disabled spot (I would never normally do it), this was it. Apparently, the officer who cited us didn't agree. Yes, it was an actual ticket, not just an Ikea citation. I talked to the friendly officer and explained the situation, but was told I should explain it to the judge in traffic court. I had visions of my foot, a nicely placed volley, and him rolling on the ground, but then I had visions of how useless I'd be to Dave and the kids in jail. Oh well, guess I'll tell it to the judge. And, I guess I'll ask Dave's doctor if we can get a disabled permit for the next month or so.

I'm also going to see if we can get some home nursing support for the next few weeks because as great as my job has been about letting me take time off (thank you, Jennifer), I am starting to feel like I need to get back to work at some point in the near future.

That's about it for tonight. Oh, except for all of you locals who keep asking how you can help out, here it is: you can take the kids out of the house for a while (one, two, or three at a time). It's really hard for Dave to sleep when the kids are running crazy in the house, and I can't leave to take them anywhere, so they end up watching way more TV than I would usually allow. Anyway, that's it - call, take the kids someplace cool for the afternoon, and you'll be our hero!

Home

It's Friday and Dave is back home. It has been a really long day. This morning I met with the dietician about Dave's new diet. His diet will be mainly liquids and soft food (frequently and in very small quantities) for 4-6 more weeks with tube feeding for 10 hours every night.

After meeting with the dietician, I learned how to change the dressings on his incisions and around his drainage tubes. I also have to empty the drainage tubes several times a day, each day recording the volume from each tube and a description of the fluid. We also have to chart how much he pees to make sure he doesn't get dehydrated, but he gets to keep track of that all by himself. After that it was learning how to flush his j-tube (feeding tube) and then how to give him all the meds he needs through the tube (some of the meds are pills that have to be crushed and mixed with water).

We got home around 2:00 this afternoon. Shortly after that, a nurse from the home health care agency came by with about 900 boxes of crap for his tube feedings. Did I say that? Of course, I know it's all necessary, but almost all of the supplies are "disposable" so it's just astounding how much gear and how many supplies we need (and that's for only a couple weeks - they'll be sending us more boxes by Fed Ex every week).

I'm so slow handling everything right now that I feel like by the time I've finished with meds and cleaned everything up, it's almost time for another round of something else. I just got him put to bed with his "dinner" and I'd love to climb into bed, but he's due for a bunch of other stuff at midnight so I'm just staying up for that extra hour (oh, and there was half a carton of Ben & Jerry's Karamel Sutra in the freezer begging to be eaten so I couldn't have gone to bed yet anyway).

Hopefully over the next couple of days I'll get quicker and more organized with everything and get some of the dosing schedules better coordinated.

That's really about it for tonight. Wow, I must really be tired. I just noticed I put two words in quote marks, which I never do.

Molly's Birthday

There's not too much new to report today. I got a call from Dave early this morning saying there was a minor setback and he probably wouldn't get released for 3-5 days, but then he called a little later saying the surgical resident who had told him that was wrong and he is still scheduled to come home tomorrow. Apparently, the misunderstanding had to do with some fatty stuff (yes, there was some technical name for it; no, I don't remember it) they found in his drainage tube, but the fat was minimal and was related to the milkshake and pudding he'd had rather than an internal leak.

Today was Molly's second birthday and I brought her by the hospital to see Dave. We took a short stroll around the ward and Dave had obviously been talking about her because everyone we met in the hall wished her a happy birthday and the nurse gave her a red Popsicle.

I had a soccer game tonight and then went directly to the hospital for a late dinner (more french fries) and to watch Gray's Anatomy with Dave. I think I missed about 50% of it because the nurse was trying to clear out a clog in his feeding tube (we're told we can clear feeding tube clogs at home with Coke, but that it's not protocol to do that in the hospital).

I'll be heading back to the hospital early tomorrow so I can learn how to do lots of the nifty things I'll now be doing to take care of him at home. Other than fainting before his surgery, I think I'm turning out to be a lot less squeamish than I would have thought.

Dave's sister Bessie and I took the kids to the Science Center yesterday. The new exhibit is "Grossology: The Impolite Science of the Human Body." I've pretty much had my fill of bodily fluids and functions.

I am looking forward to getting Dave home and healing, so he's back in fighting shape for the next round of chemo scheduled to start in about four weeks. With any luck he'll be able to start posting his own updates soon.

Wednesday

There's not too much that's new to report, but I did post a picture of Dave (thank you, Tara) looking rather dapper in his hospital duds. You can see he's looking pretty much like himself with some new body art (in addition to the neck stitches, he's got 30 or so staples running all the way down his belly and then another incision running from the front to the back of his ribcage). Somehow in the pre-op meetings with the surgeon, I missed the fact that they would be sawing through ribs and then rejoining them with titanium. No wonder it hurts to breathe!

Dave graduated from the modified clear liquid diet to the full liquid diet (woo hoo!), which means he can now drink things like milkshakes and lattes (he did miss his coffee and they actually make a decent latte at the hospital). They are still monitoring one of his drainage tubes and if it continues to drain more than they'd like, he may have to go back to the modified clear liquid diet or possibly even back to nothing at all (say it isn't so) to give his body more time to heal before adding food back again.

His discharge is now looking like Friday at the soonest, but that depends on how the eating goes over the next day or two.

Since there wasn't much new to report, I had planned to use some space to thank so many people who have been such an amazing help and so incredibly supportive in so many unexpected ways, but my head is feeling slightly muddy thanks to a large glass of wine that my doctor assures me is good for my stress level and my heart too, so that's on my list for tomorrow.

Swallow Test

He passed the test!!! What a relief! He was finally able to enjoy a little bit of water, Jello and some broth (actually, he said the broth was not enjoyable at all, but hopefully still better than nothing). He has to take it very slowly and give his stomach a couple days to adjust to the clear liquid diet before he can eat any real food. For the time being, he has to sit completely upright in a chair when he drinks, and then has to stay upright for at least 60 minutes. He ordered some broth for dinner tonight, but then was too tired to contemplate being out of bed for an hour so he didn't bother.

The surgeon said there's a chance they may send him home on Thursday, which is earlier than the original estimate of two weeks. Frankly, it scares the heck out of me because while he is doing so much better than even a couple days ago, he's still experiencing a lot of discomfort (pain), still has some tubes to drain his incisions, and still requires a ton of respiratory therapy. I'm also worried about how hard it will be for him and the kids to have him home, but not able to do the things he usually does. Who knows how long it will be before he's up for some of the Dad and boys wrestling matches that were a regular feature around here. (I can't really say I miss those too much. The end of the match was usually signaled by one of the following happening: 1) Ian crying; 2) Miles crying; 3) both boys crying simultaneously; or, 4) Dave's end-of-match lecture which always went something like this, "You can never, ever, ever punch a man in the penis.")

Of course, scary or not, I would be ecstatic to have Dave back home sooner than anticipated.

I'll keep you all posted when there's some new news (guess that's a little redundant).

Monday

Just got back from the hospital and Dave is doing great. We sat and watched Heroes together and it was so nice to feel like we were doing something so normal that was part of our regular pre-surgery routine. We were interrupted only once for the nurse to give him his assortment of shots and pain meds. I hadn't eaten any dinner, so Dave encouraged me to order some food from the hospital room service. I felt horribly conspicuous mowing down a burger and fries knowing he couldn't eat anything (for his sake I decided to forgo the milkshake since I knew that would really get him salivating). Sadly, he actually asked to hold a french fry. He even licked the outside of the fry under my disapproving eye. It's crazy to think he has not swallowed anything - food or liquid - for an entire week.

The highlight of the night was when he got his NG tube (for NasoGastric, I think, although I just refer to it as the NoseGoo tube) removed. FINALLY! He can now turn his head without getting wapped in the face with the tube, and it was just totally unpleasant for him to have that thing up his nose. His nose was very sore after they pulled it, but some good pain meds helped that pretty quickly.

I did snap a picture of him (half shaven face and all), but now my phone is having issues emailing it to my computer (big surprise), so no picture tonight. As I left his room, he was getting ready to shave the other side of his face - of course, the first side is already starting to look pretty stubbly.

His pulmonary therapy is going well. It's pretty uncomfortable for him, but he gets his lungs x-rayed each night and the surgeon said his lung capacity is increasing each day, but that there's still more expansion that needs to happen. Tomorrow morning is his first big "test" - the swallow test. If there is no leakage at the anastomosis, then he'll get to start enjoying some vittles - jello and clear liquids to start.

I'll post the results of the swallow test tomorrow.

Shannon

I have no creativity for a title...Sunday's Update

Things are continuing to move along nicely with Dave's recovery. We finally got the pathology report back from the surgery and it was good news. Let's see if I can get this right: there was minimal cancer left in the tumor they removed from his esophagus - mainly it was just the evidence of where the cancer had been killed off by the chemo and radiation. They removed a total of 54 lymph nodes and found only one cancerous node other than the ones they already knew about from the PET scans. They'll start him on another round of chemo in about four weeks to mop up any microscopic cancerous cells that might have eluded detection.

He's been bidding farewell to a couple more tubes every day. The one he's most eager to get out is the tube that goes up his nose and through his sinuses into his stomach. That one should come out tomorrow morning and then he'll have the swallow test to make sure nothing is leaking where they reconnected his downsized stomach to the remaining couple inches of his esophagus.

I think his spirits are improving as well and he's been happy to have some more visitors now that he's out of the ICU. His sister Michele came back to town for the weekend, so she and Dave's mom have been spending lots of time with him. His cousin Bev (Happy Birthday, Bev!) got to see him this evening, and his sister Bessie is getting into town from Rhode Island later tonight.

Our friends Kevin and Lisa and Michael all visited Dave today as well. If he gets the nose tube out tomorrow, I'll snap a picture and post it here so you can all see he's actually looking pretty good (oh, except for his shave - he tried to shave a week's worth of stubble but gave up on the crummy hospital razor after shaving half of his face).

Thanks again for the encouraging words many of you have posted and emailed. I really never had any interest in writing a blog of any kind, so it's nice to know people are actually reading it! Also, for you locals who have asked about visiting, he's now in Room 701 (take the SW elevators) at Swedish.

Goodbye, ICU!

Walking into Dave's room yesterday (Friday), I immediately knew he was feeling at least slightly better and more like himself. The TV was on and the nurse smiled and told me Dave thought she was only 26 years old (she was 43). He had been starting to show some hostility towards some of the many people in and out of his room for therapy (nurses, respiratory therapy, PT, occupational therapy, pain management, etc), so trying to flirt with one of the nurses was an excellent sign!

They've pulled a few of his tubes (chest tube, epidural, neck IV), but there are still a bunch to go before he's fully disconnected. At this point, the one that is driving him the craziest is the NG tube up his nose and into his throat to stop anything from getting down his esophagus. The doctor also started him on some tube feedings (yum, yum) yesterday afternoon. It did occur to me that between having nothing to eat or drink (of course, they are keeping him hydrated via IV fluids), being sleep deprived by the constant need to be rolled over for various forms of therapy, and not seeing natural light for several days, plus all the medication, it's no wonder he's a little batty.

He got moved out of the ICU yesterday evening. His new room has a window he can actually see out. He called at 8:00 this morning and said he got better sleep last night (a couple of 2 hour blocks of sleep), his pain level is much more tolerable than it has been, and he was thrilled to see the sun shining in his window!

He's already devising ways he thinks the hospital can improve their systems - he wants a flow chart hanging on his wall outlining his medication schedule and therapy sessions. He wants me to give him the outside phone number to the nurses' station so he can call them directly if they don't answer his call button.

I know he still has a long way to go, but I feel like he's on his way. Last night was the first decent night's sleep I've had in a while too.

Thanks everyone who has posted for your kind thoughts and encouraging words.

Slow Progress

Today is Friday and it's still not looking like Dave will be out of the ICU for a couple more days. I realize it's where he needs to be right now to get the care he needs, but it's still tough. It feels somehow like getting him out of the ICU will be a major milestone.

He's on some pretty heavy duty pain meds now. It seems like they are finally able to control the pain, but with lots of side effects. He's been hallucinating (yes, some of you may enjoy that) and having lots of nightmares. He also thinks lots of people have been to visit him that haven't been and he thinks he's changed rooms a couple times. For those of you who have wanted to visit, but can't until he's out of the ICU, don't worry, as far as he's concerned you probably did visit...

He was up out of bed working with an occupational therapist yesterday. His big task was taking off his socks (mainly to get him moving and stretching). He started to get upset when he realized there was no point to it (the therapist told him to put them right back on after he'd struggled to get them off), so I grabbed a new pair and told him the exercise was actually because he needed to change his socks.

I feel good about the time I spend there with him, but it's really hard to leave him alone (acknowledging that he's never really alone in the ICU). Of course, I know I have some other little people who need me around just as much as ever, so I'm trying to balance my time between home and the hospital. Dave's mom, Judy, is staying with us so it's made it much easier for me to come and go. Right now the boys are in school and Molly went to spend the day with my mom, so Judy and I are heading to the hospital. Each time I walk into his room, I hope to see the usual Dave twinkle in his eyes, but so far it just ends up being the clouded look of pain and medication. I can't even begin to explain how hard it is to see him like this, but I know it's just temporary and we'll all get through it.

We expect to get the pathology report back today, so I'll be holding my breath until then. I'll post another update after we get the pathology news.

Day 3

Just got back from my home away from home. Wish I had some fantastic news to share, but things in the ICU seem to be progressing very slowly. It's not looking likely that he'll be out of the ICU in the next day or two. The doctor hopes to start removing some of the tubes over the next couple of days (I tried counting the tubes and gave up after I got to 15). I've been spending as much time as possible at the hospital and Dave is mostly in and out of a very restless sleep and has been complaining about having really bad dreams (from the meds, no doubt).

On the positive side, the rehabilitation therapist came by late yesterday and they actually got him standing on his feet for about 30 seconds. Such a small thing, but did it ever feel good to see him out of that bed even for less than a minute.

The surgeon came by this afternoon and said that given the extended length of the surgery, it's not surprising the recovery is going slowly.

I hope to have something more uplifting to share tomorrow.

Also, for everyone who has responded to the blog, sent emails, and phone calls, I'm passing them all on to Dave each day. Once he's able to sit up and read, I'll print everything out for him. I know it helps lift his spirits tremendously. Thank you.

Shannon

Surgery Day is Over!

I just got home from the hospital and I'm so ready to flop into bed, but I promised Dave I would post an update. We got to Swedish at 6:00 this morning for what we were told would be a 9 hour surgery. After getting Dave's IVs and epidural going (oh, and I fainted and needed medical attention, but that's really too embarassing to tell any more about), he was taken in to surgery at about 8 am. Several members of our family stayed in the waiting room with me all day and more family stayed at the house to take care of the kids.

We got periodic updates from the nurses in the operating room, but the surgery ended up taking more than 12 hours.

We were told things went very well, but that the procedure just ended up going more slowly (in large part due to the tissue damage caused by the radiation) than they had anticipated. Both surgeons were very happy with the results. We'll know more about what and how much they took out when the pathology report comes back.

The surgeon did say that as Dave came out from the anesthesia, he gave him a smile and a thumbs up. We got in to see him briefly at about 10:00 pm. The first thing he said when his brother walked in the room was, "I'm hungry" and he asked if we might be able to sneak him a bagel (the surgeon pretty much guaranteed he won't remember any of this tomorrow - nor will he be eating or drinking anytime soon).

Anyway, the news was good and now we're moving into recovery mode. The next couple of days will be spent practicing breathing (they deflated a lung during the surgery, so he needs to work on slow deep breathing to get it fully reinflated), and then learning how to swallow again. He'll most likely be in the ICU until Thursday and then moved into a regular room for another 10 days or so.

Thanks to everyone who posted responses to the blog. I'll print them all and bring them to Dave in the morning. And, thanks so much to everyone who has called, written, and emailed over the last couple of months. The outpouring of love and friendship has been truly amazing and has really kept us going.

Shannon

Well,off we go...

So here is a first effort, let's see what comes of it.

Most of you have been in the loop, some of you may not have been. In Mid-November we had the misfortune to receive a diagnosis of stage 4 esophageal cancer. I had been having some difficulty swallowing starting in late August, let it go for 7-8 weeks and then a phone call with my cousin Bev had me going in to see the doctor. The diagnosis came quickly and thunderously.

After interviewing an Oncologist and a surgeon who left us rather disspirited, we met with Dr. Gold at the Swedish Cancer Institute here in Seattle. He gave us a committed sense of mission and a hopefulness that drew us to him immediately. I started five weeks of aggressive radiation and chemotherapy on Dec. 11th and wrapped it up on Jan. 17th. A PET scan on Jan 9th showed significant shrinkage and, just as important, no new occurrences. We had three weeks to rest and heal from the treatment, (including a week to Whistler, British Columbia for some snowboarding, ski school for the boys, swimming and lots of food.)

As successful as the treatments were, the next step is surgery. Monday the 12th, we go in for a significant surgery. (Are there any insignificant ones?) Doc says 3-4 days in ICU, probably 2 weeks at the hospital, then some changes in lifestyle to get used to.

Check back for the latest if you would like to, send us any e-mail addresses to add to this list, post something, send us a link, or just ignore the whole thing and go outside to enjoy the sun.