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.