Progress

Creeping up to a month post surgery, and Dad is doing really, really well.  A visit with the surgeon last week cleared him to eat anything he wants to try, including sausage!  However, it's been a bit of a learning curve to figure out what works and what doesn't. The first week home was mostly soft foods.  Second week added a bit more meat and potatoes.  He's been avoiding things like rice, toast, and veggie and fruit "skin" to make sure that nothing gets caught in the anastamosis (the place where his stomach and what's left of his esophagus meet in his throat) as it is healing. He's done OK with rice, but still avoiding most of the other stuff.  He's been advised to get 105 grams of protein a day, which is equivalent to 15 servings!  So we've been checking labels and adding greek yogurt and tofu to our diet as we can.  Did you know that one container of Fage plain greek yogurt has 20 grams of protein?  That is a crazy amount, especially for something that tastes like sour cream :)   So, as we had read and everyone seemed to tell us, multiple mini meals throughout the day works better than 3 square meals, and he and Mom are figuring out what and when works for them.  Eating throughout the day has never been a problem.  Eating the right things so that by the end of the day you've gotten all the nutrients you need is a bit harder.

He has also been OK'd to drive since he isn't on any of the heavy medications.  However, his external incisions keep him from being able to turn his head very far or very quickly.  And he still has the 10 lb lifting restriction for another month or so.  But he's getting stronger every day.  He and Mom drove out to the thrift store in Warm Beach last week, and Dad worked at Josephine (the nursing home where he does chaplain work) for a few hours on Friday.  We're planning to go to Bellingham tomorrow for church, but Dad won't be preaching, still a few weeks before he and his voice are strong enough for that.

Because he is doing so well, and because Andy and his family will be coming out for a visit later in October, I'm heading back to Rochester on Tuesday.  I really didn't know what to expect for this recovery time, but have been amazed to see God at work to bring Dad so far so quickly.

Lessons from my Father

This summer I have had the privelege of spending a lot of time with my parents.  More time than any since the year I lived with them after college.  My Dad, ever the teacher has taught me a few things over the past few months and I thought I'd share them with you.

1. Mirrors are there for a reason.  Use them

 

 

   

 

 

 

 

 

 

 

 

 

2. ALWAYS bring a container on your walks.  You never know when you might find more blackberries

  

3. You have to get up pretty early in the morning if you want to do the Sudoku around here.

Blackberries

One of the real joys of living in Washington in September is all the blackberries. They literally grow like weeds out here.  Mom and Dad have a ton of blackberry bushes in their back yard and they keep on producing.  Berries of all kinds are not on Dad's approved list of foods because of the seeds, but he's been busy keeping Mom and me well supplied, and I've been out picking some too.  Yesterday, I decided to try a bon apetit recipe for blackberry buttermilk cake.  I think it turned out quite nicely.

Heading home

It's official, Dad is being discharged today. Soft solids have been going quite well, and the strictest of the sternum regulations (no hands behind his back, don't lift elbows above the shoulder) have been lifted. There's quite a bit of paperwork and stuff, but as soon as the nurses are able to do those final discharge things. He's feeling and looking good. And looking forward to resting at home.

Food!!!

OK, "food" is a stretch, but the NG tube is out, and Dad has been OK'd to swallow.  Trying some apple juice and possibly some broth this afternoon.  Taking it nice and slow, but so far it seems to be going ok.  He's been waiting for this and teasing every new nurse that comes on about some coffee or supper, so we're all enjoying being able to order something from a menu. 

Monday again

It's been a week since surgery, and the NG tube is coming out today!  Dad had an examination early this morning and they decided to proceed with removing the NG tube today and then observing him closely and possibly coming home tomorrow!  Mom and I are going up to Seattle later this morning to see what's up, but things are likely to be moving quickly once that tube comes out.  Will update more as I know it.

Day 3

Day 3 and still going strong. Dad seems a bit more alert today, staying awake a bit longer at a time, going 7 and 8 laps on his walks.  In fact, his nurse told him he needs to cut back on the number of laps he does since he's really not getting many calories in via his feeding tube. Definitely not what he wanted to hear, but kinda funny for Mom and me to hear.  They are in the process of removing his neck and chest "tubes" (drains) right now. (down to 5 for those of you counting at home) I chose this time to step out since I don't do real well with blood or tubes or anything like that. They'll be taking him for a chest x-ray later this evening to make sure there aren't any air pockets or other issues with the removal of these drains. The plan is to "cap" his epidural tomorrow and try controlling his pain via meds through the NG tube. That may slow him down a bit, but not if he has any control over it :-)

Day 2

A beautiful sunny day in Seattle today. Dad's feeling pretty good. He doesn't have much of a voice today due to the NG tube, and perhaps a bit of the dehydration of yesterday, but he's raring to get up and move. Waiting for his 4th walk of the day (it's only 10:30 here now). He told us that he did 3 laps then 4 laps then 5 laps. To put this into a bit of perspective, we are only 40 hours post-op and each new nurse or doc that  comes in mentions that he should maybe try to walk a bit around the room soon.  I think he likes the shock on their face when he tells them he's ready to go for his 4th round. I really need to get him a pedometer to help him keep track. Some talk about maybe removing one of the drains today, but not sure quite what that means. He's a bit uncomfortable sitting in bed or the chair, which is another reason why he likes to go on walks, to get a new position and just "out" of the same room.

He sings because he can!

One of the potential complications the surgeons mentioned to Dad before the surgery was potential damage to his vocal cords or to a nerve in his neck region very close to where they were working that controls speech.  This was a particular concern for Dad who, of course uses his voice to preach, to comfort, and to minister. So, it was a great comfort for him to be able speak yesterday upon coming out of anesthesia, and while his voice is a bit raspy right now with tubes in his nose, and the workout his lungs went through yesterday, his vocal cords don't seem to have been damaged at all. This morning, as Mom was reading Psalms out loud and dad was drifting in and out of sleep, he stared singing Our God Reigns and was able to actually belt it out. So thankful for this gift.

Tuesday

Day 1 post op and doing well. Dad is sitting up in a chair and they're talking about starting to use his j-tube later today, and possibly even walking around. Lots of tubes, of course. Mom counted 10 last night, down to 9 this morning and possibly 8 by tonight. Hoping Dad can get lots of rest today, and a bit of daytime TV. Praising God for His goodness to us.

Surgery day

6:45. We're sitting with Dad in his room (not ICU!). He's looking good and talking to us and his nurse a bit. He looks really good considering what he's been through. In a little pain, but not too bad. The nurses are making sure he's all hooked up properly and that things are flowing in and out as they should. A long day, thank you do much for your prayers as you've shared this journey with us. I'll update more tomorrow.

5:47. Still waiting for Dad to move from recovery. I don't really have anything to update, but every other time I've started an update, something has happened, so we'll see if this works.

3:29. Got a chance to talk to Dr. Wood and everything went well with the surgery. Just exactly as expected.  Praise to the Lord. He may be able to avoid the ICU altogether, but will have 7 days with the NG tube and 2-3 days with the neck and chest drains no matter where he's at.  He's still in recovery, we're waiting relatively patiently to see him when we get the OK.


3:01 p.m.  Still waiting to talk to Dr Wood. Dad's been in recovery since 1:30. Assume they'll move him to the ICU pretty soon.

1:23 p.m. We hear that Dad is done with surgery. Dr. Wood has to see another patient but will come and talk to us as soon as he's done there.

12:26. Still waiting. Maybe thinking about lunch, but not really.

10:04 Back from breakfast and a tour of the gift shop to a call from the nurse letting us know that Dad is in surgery. It took a little while to make sure all the scopes were placed correctly. Not sure exactly what time he went in but the surgery itself will likely be 4 hours from here.

8:03 am. I've moved over to the surgical waiting room where there's a board to update families on where patients are. Next to Dad's code it still says "arrived" so I'm pretty sure that means they haven't taken him into the OR yet. Also, Mom is still "back" there with him, she will come find me in this waiting room when ...  Ah, she just walked in

8:11. Dad's status has changed to "patient in the OR". Mom said he had a bit of a "vagal event" when administering the epidural, but the anesthioligists were watching him and got him through the feeling of faintness before proceeding.  They assured Mom (and Dad) that things were fine to proceed. So, now the waiting begins. I think mom and I are going to see if we can find some breakfast.

Good morning. It is 5:56 am and Dad is checking in at surgery reception. We were up early this morning to drive through a bit of rain to get to Seattle. We all got a bit of sleep lat night, but it's going to be a long day no matter what.  I'm writing from my phone, so please forgive the many spelling errors there are sure to be

6:40. Dad and Mom were just taken back to pre-op. I'll check in w the desk in a bit to move to the official waiting room. Sudoku and jumble completed.

Getting Ready

A pleasant quiet weekend here in Stanwood.  We've been tranquilly busy getting ready for tomorrow.  Packing, choosing books, Sunday brunch, washing clothes, drinking magnesium, phone calls with family, couple miles around the neighborhood, Sunday naps. 

Dad reports to the surgical floor of the Medical Center at the University of Washington at 6:00 a.m. tomorrow, and we've been told to expect surgery to take 6-9 hours.  So it will certainly be a long day for us tomorrow, even though Dad won't be aware of most of the day.  Mom got a hotel room about a mile away for a couple of nights for the two of us, which will be nice both for the shuttle and room. 

I've figured out how to update this blog through my phone, so I'm planning to post periodic updates tomorrow as we know them.  Hope you'll follow along throughout the day if you are interested.

There are a lot of unknowns for the next couple of weeks, but we are so grateful we can trust in the One who does.

We took the day on Thursday to go to Deception Pass and Whidbey Island.  I'll add one of the pictures from Mt. Erie that turned out decently, considering it came from my phone.

Good news

As you are probably aware, Dad had a CT scan this week, and met with Dr. Wood to discuss the scan on Wednesday.  We received the best news possible.  The spots that showed up on his lungs August 1 have not changed in any way, and closer inspection of the 1st scan done in April at another institution (therefore a different machine, and a slightly different angle) show that these spots have likely been there all along.  What does this mean? The cancer has shown no signs of metastasizing (spreading) outside of the esophagus.  And since Dad has gained back quite a bit of strength over the past month, he was OK'd to proceed with surgery to remove the esophagus and pull up his stomach.  This is scheduled for Monday, September 10.

I (Sara) am flying back out to Washington this Sunday (Sept 2) and will be out there for a few weeks.  They were told that Dad will be in the hospital for 7-9 days after surgery, and then a few weeks (months?) of  recovery at home as he works to gain back strength and adjust to the rearrangement of his organs.

In the continuing "God is so good and preparing things in advance" story of my life this year, a good friend from work who is moving away from Rochester the end of September, ends her apartment lease today and will be staying at my place for the next 3 weeks.  She's planning to "move in" on Sunday after giving me a ride to the airport.  Isn't it just crazy/amazing/only-God-arranged, how this has all been working out?

I'll post more next week once I find out a few more details about the surgery to let you know how to be specifically praying for Dad (and Mom).  Are there any questions you have that you'd like me to answer in the blog?

August

How did it get to be August 16 already? This month is just flying by.  So, now in the third week of August, here's where we're at.  Dad had a Pulmonary Function Test, CT, and PET scan on July 31 and on Aug 1 he and Mom met with Dr. Wood (the thoracic surgeon at the University of Washington Medical Center who will be performing the surgery) to discuss the results of the Tuesday tests.  Dad passed the the Pulmonary Function Test that measures his lung function and capacity with flying colors, however the CT scan shows three small spots on Dad's lungs that were not on the scans done in May.  These spots are very small, so small that they can not (yet) be biopsied.  So, Dr. Wood recommended that we wait a month, give Dad some time to gain strength and recover from radiation and chemo, and then do another CT scan to see what's happening with these spots.  Dad is scheduled for that second CT scan on August 28 and a consult with Dr. Wood on August 29.  If these spots have not grown, and are otherwise not worrisome, they'll use that time on the 29th as a pre-op appointment for Dad, meaning (we think) that surgery is likely to be sometime the first week of September.

I (Sara) was able to fly back to Rochester the evening of August 1 and came home to a beautifully kept house thanks to my friends Bobbi and Willi who closed on their own house that same day.  It's nice to be back home, back at work, and back at my home church.  I am planning to go back to Washington Labor Day weekend to be there for the week or two of Dad's surgery, and it sounds like I'll be able to work from Washington again for few weeks beyond that.

It's a bit difficult to know the "best" way to plan when we don't really know what these spots mean.  For most people spots on the lungs could mean many different things, anything from remnants on the scan to scarring from a past respiratory infection to a malignant or benign cancer.  For Dad, it could also mean the same things, with the additional possibility of it being some kind of scarring from radiation. 

So, we are doing as Dr. Wood suggested and waiting a month and giving Dad time to regain strength.  And he has been getting stronger.  He's been able to eat actual food, and has been out walking, and (unbelievably from when I left) gaining weight!  These are all good things.  We are also learning (again) to wait on God and continue to bring our concerns and anxiety to him.  I don't know how it has been for the rest of the family, but for me I seem to experience daily, and sometimes hourly, tides where the waves bring in the refuse of anxiety and concern followed by the reminder that God is in control of all of this, washing away the driftwood of concern as the waves recede and His peace is left in the wake.  I am no closer to knowing or understanding, but I know that the tide waves will pass as surely as sun rises.

I don't think we'll know anything more until the 29th, but I'll try to keep you updated as we press on.

Thoughts

“Come, all you who are thirsty,

come to the waters;

and you who have no money,

come, buy and eat!

Come, buy wine and milk

without money and without cost.

2 Why spend money on what is not bread,

and your labor on what does not satisfy?

Cedars by Lydia

Listen, listen to me, and eat what is good,

and your soul will delight in the richest of fare.

3 Give ear and come to me;

hear me, that your soul may live.

I will make an everlasting covenant with you,

my faithful love promised to David.

4 See, I have made him a witness to the peoples,

a leader and commander of the peoples.

5 Surely you will summon nations you know not,

and nations that do not know you will hasten to you,

because of the Lord your God,

the Holy One of Israel,

for he has endowed you with splendor.”

6 Seek the Lord while he may be found;

call on him while he is near.

7 Let the wicked forsake his way

and the evil man his thoughts.

Mountains by Anna

Let him turn to the Lord, and he will have mercy on him,

and to our God, for he will freely pardon.

8 “For my thoughts are not your thoughts,

neither are your ways my ways,”

declares the Lord.

9 “As the heavens are higher than the earth,

so are my ways higher than your ways

and my thoughts than your thoughts.

10 As the rain and the snow

come down from heaven,

and do not return to it

without watering the earth

and making it bud and flourish,

so that it yields seed for the sower and bread for the eater,

11 so is my word that goes out from my mouth:

It will not return to me empty,

but will accomplish what I desire

and achieve the purpose for which I sent it.

12 You will go out in joy

and be led forth in peace;

the mountains and hills

will burst into song before you,

and all the trees of the field

will clap their hands.

13 Instead of the thornbush will grow the pine tree,

and instead of briers the myrtle will grow.

This will be for the Lord’s renown,

for an everlasting sign,

which will not be destroyed.”

Isaiah 55 above has long been a favorite, but has seemed particularly pertinent over the last couple of months.  From the very literal references to eating and drinking, of which we all have a new perspective, to the realization of spending money and labor on what does not satisfy as I've transitioned into a new (more satisfying) position at work, to the mountains and the hills busting forth in song after the rain (Washington is certainly the place to see this in action) even the verses talking about the thornbush and briers giving way to pine trees and myrtle has resonance in the yard work I've gotten a chance to do and the run/walk into some of the less developed neighborhoods that I've been venturing into.  As with all of scripture there is so much to glean from these words and they can strike fresh again and again as we journey through new seasons in our lives, can't they?
 
Today I was especially struck by verses 8 and 9.  "for my thoughts are not your thoughts, neither are my ways your ways."  Throughout this journey we've been on over the past couple of months one of the most difficult things has been knowing when and how to make plans for things like flights and work hours and grocery trips not knowing how Dad may react to the drug or the broth or the riding mower, or how long it may take for him to gain back energy to drive, to work, to preach.

We were pleasantly surprised a couple of weeks ago to learn that rather than 6 rounds of chemo and 28 days of radiation as we originally thought was scheduled, Dad was given a stronger dosage of both that only required 5 rounds and 24 days.  Chemo was tough for dad leaving him nauseous some of the time and exhausted most of the time.  Radiation was not particularly taxing, but did require a 60-minute round trip to Everett each day. 

We are now in the rest and recovery section of Dad's treatment a few weeks to give his lungs time to recover their function and his blood time to recover their platelets and cell counts.  Dad has long been scheduled to have a pulmonary function test to see how those lungs are doing, and a PET scan to see where the cancer is at on August 7 and 8 at the University of Washington in Seattle. We think that Dr. Wood (the thoracic surgeon) will be able to schedule the big surgery based on the results of these tests.  While we don't know exactly how far out it will be scheduled for, we're thinking it will be the end of August or first part of September.  I would like to return to Rochester for a few weeks while Dad is waiting for surgery.  We were waiting to see how Dad was feeling before I made any definite plans. And he has been doing OK, but still tired.  He's not really eating anything both because he has no appetite and because it's been difficult to keep much down, although it does seem to go in spurts (no pun intended (OK, maybe a little intended)).  However, he seems to be getting stronger each day and I feel OK leaving them on their own. I feel a bit nervous leaving them on their own to drive and function during the tests in Seattle, but they feel OK getting to Seattle on their own for appointments, and you have to let them fly on their own at some point.  So, just yesterday I bought a ticket back to Rochester leaving Seattle at 5:30 on August 1 (Wednesday).

Then, today, in a definite "my ways are not your ways" kind of moment Mom and Dad received a call from Dr. Wood's office saying that Dr. Wood is going to be on vacation the week of August 6th, and wondering if they can reschedule the appointments for next week... Monday, Tuesday, and/or Wednesday. 

Not that I need to be here for these appointments, not that they couldn't get there and back without me, not that there aren't others to help out in case of emergency.  It was somewhat of a step of faith to make a decision to go back to Rochester and hearing this, being able to be here, Dad even being able to have the tests done earlier because of finishing radiation and chemo early feels like an affirmation that the steps and decisions we are making for little things like air plane tickets are the right ones.

We do not know what tomorrow brings, but because we have seen God's hand at work we can know that the words of Isaiah are true and can take comfort in the fact that while our thoughts are racing and muddled and most certainly not the right ones in our own power, we can rely on the One who says

“As the heavens are higher than the earth,

so are my ways higher than your ways
and my thoughts than your thoughts."

Good news

Mom and Dad went to Everett today for day 22 of radiation as per usual, and the techs who run the actual radiation mentioned that tomorrow was Dad's last day of radiation.  This after the chemo techs on Tuesday said that this week (round 5) was Dad's last of chemo.  Weird, right?  Well, they asked the PA on Tuesday, and the radiation oncologist today about this, and the PA said that it must just be a scheduling error and she showed him here next Tuesday for his last round.  The Radiation oncologist today at first said, "no, sorry, we've got another week to go" but then just as Mom and Dad were leaving stopped them and said that actually, tomorrow is the last day of radiation.  Turns out Dad's been on a more intensive regimen of chemo and radiation, and the protocol for this is only 23 days, not 28 as we've though all along.  So tomorrow is his last day of radiation.  We're hoping to talk to the oncologist this week to confirm whether or not Dad needs the 6th round of chemo or not.  So, potentially, tomorrow's radiation treatment might be it for a few weeks.  Good news for all of us!

Strawberries

Have you ever seen anything so beautiful?  On our way back from chemo and radiation, and a consult with the PA from oncology we stopped at a local place and picked up a half crate of the juiciest, ripest, sweetest strawberries I have seen in long time.  These babies are sooooo good, and not a bad one in the bunch. 

All of us were up early this morning (like 5:00 a.m. early).  Me to get a couple of hours of work in before going to Everett for appointments.  Mom and Dad to flush the j-tube which had been going all night.  Flushing consists of pushing water into the tube via a large syringe.  This both cleans the tube and provides an extra bit of fluids for Dad, keeping him hydrated.

Tuesday's are usually long days as Dad gets both chemo and radiation.  Today's treatment was fine.  His white and red blood cell counts are kind of low, his hematorcrit is kind of low, and his platelets are more than kind of low. Low enough that if they're not better next week or have gone down, he may forgo the last round of chemo.

We made a stop at Wendy's on the way back for the standard Frosty, and Dad asked to go in as he says he enjoys the smells of "real food".  Mom and I were happy to oblige.  I should probably do a whole post dedicated to Wendy's and their amazing Frostys.  They are just the right consistency.  Come in vanilla or chocolate (or the Carlson-preferred mixed option) and stay thick but smooth long enough to slowly eat the distance it takes from Smokey Point in Marysville to Olympic View Place in Stanwood.  Anyway, we've been looking for other places that serve a shake or malt that compare to Wendy's (the trials we go through :-) We've tried a few different places looking for the right consistency, a decent flavor for Dad's drug-addled taste buds, and most importantly no chunks, or big enough chunks that he can eat around them. So much fresh fruit is in season right now or will soon be ready and lots of places are advertising fresh strawberry shakes. Dad really, really wants a fresh strawberry shake, but unfortunately it's just not working for him.  However, this doesn't keep him from trying.  And Mom has pureed different stuff to put in a smoothy, serve over ice cream, or just freeze (the watermelon granita has been a special favorite.)  We picked up a "soft serve ice cream maker" yesterday and are hoping that we can add various flavors to that to keep Dad interested.

Anyway, we got back from our day and I, being me, proceeded directly to my room for a nap (5:00 a.m. people!).  I emerged from my room a couple of hours later to find out that Dad has been suffering one of the nastier side effects chemo and emptying the contents (however little it might be) of his stomach.  And Mom has been by his side for all of it.  Night's have been tough for Dad as when the j-tube is going for feedings, he can not lay down flat.  There's also been a learning curve for how much can go in at a time and the best ways to take care of the tube and all it's apparatus.  Tough for Dad, but maybe even tougher for Mom who is up with him through all of it, and working to try whatever to make it better, while still having to be the taskmaster to keep pushing fluids, and nutrients, and drugs, and trying to calculate how much has gone in and how much has stayed down.  And, not to complain, but tired/exhausted Dad without the outlet of his workbench, or garden is a cranky Dad, and Mom bears the burden of that more than anyone. 

I came out to the kitchen to find that in between the bouts of nausea in the bedroom (sorry, that sounds like T.M.I.) Mom has cleaned and hulled most of the berries we bought earlier.  Freezing some and mashing the rest... to make a sauce for Dad...  to try in his ice cream... but probably to end up the same place as today's frosty (definitely t.m.i.). 

I started this rather long rambling post asking if there was anything more beautiful than the cleaned and hulled fresh strawberries posted above, but I'm going to end with what, to me, is even more beautiful. 

The work of a tired and exhausted woman. Giving the largest portion of the treasure of strawberries.  Mashed in a bowl ready to be strained to get juice to make a sauce to go in a shake that may or may not go down and may or may not stay down. All in the hopes of giving some comfort.  A picture of love. 

Halfway point

My cousin  has been trying to convince me that walking/running is a good thing.  I'm not entirely sure I'm sold, but I have liked seeing the progress I've been able to make over the last few months, progressing from entirely walking, to partly running, and maybe some day in the far distant future, running an entire 5K.  I have an app on my phone (Nike +GPS) that tells me how fast I "run" and gives me some other statistics as I go.  If I set it for a certain distance, say 5K, it will give me periodic updates including telling me when I'm at the halfway point.  I like hearing that "half way point" in a mildly cheery, mostly optomistic, not judging you for your speed voice.  It usually means that the hardest part of run (actually getting started) is behind me. I'm warmed up and it's a good time to push myself a bit get a better over all time or faster mile, or whatever.

So, Dad is officially at his "halfway point" with chemo and radiation.  3 weeks in, 3 weeks to go.  14 days of radiation down, 14 to go.  3 rounds of chemo complete, 3 rounds to go.  3 boxes of Snapple Sorbet bars down, 10 more to go (come on, those things are good!). 

It also feels a bit like we're getting warmed up for the push to come.  We're figuring out what this drug does or doesn't do, we've learned that Frostys work and oyster stew doesn't, we know that everything works better when Dad is hydrated.  We know that crushed pills taste horrible and "hiding' it in pudding only goes so far.   We've been through two "mini" surgeries. One to place the port for chemo, and one to place the jejunostomy tube (hereafter called the j-tube) for feedings.  The port was a relatively simple procedure and Dad came home the same day. The j-tube was a bit more extensive as they put him under, went in laproscopically, and attached the j-tube to his jejunum.  He had the procedure Friday afternoon, and was in the hospital in Everett until today (Sunday).  Both procedures involved waiting rooms and anesthesia and hospital cafeteria coffee, and hyperawareness of every code called in the hospital. Both procedures involved a lot of "what if's" and "maybes".  Both procedures came with so much evidence of God's hand at work in Dad's life and in ours.

We have a strong hope that having learned what we have in the first half will make the second half go well.  The j-tube will allow Dad to get nutrients that he needs, keeping him hydrated and strong.  We also have hope that as radiation proceeds the tumor will shrink, and he'll be able to swallow more. The first half of this race has been full of encouragement in your words, prayers, gifts, phone calls, and letters.  Not only those directly to Dad but also the many words of encouragement and prayers for/to Mom, to me, and to Andy and Nathan as well.

We are pretty sure that the next half is going to be tough, in some of the same ways, and probably in new ways too.  We also know that the big hurdle of the surgery is still a ways out as there will be at least 4 weeks of recovery between the last radiation and the surgery to remove the esophagus. 

But we've heard the voice saying "half-way point" for this run, and today that voice is a comfort.

Week 2

It's Friday evening, and we've made it through the second week of treatments.  The schedule has been radiation 12-12:15 Monday through Friday, and labs and chemo for about three hours on Tuesday, and a visit with the radiation oncologist on Thursdays.  Last weekend and this week has been a bit tough as Dad hasn't been able to eat/drink much or keep much down (not an unexpected result of chemo and especially radiation) and so this Tuesday had an extra hour to give him a liter of fluids through the IV.  Dad had his port placed on Wednesday this week and there was some concern because his heart rate plunged at one point.  They assume it's a combination of the anesthetic they gave and the fact that he is dehydrated, so he got another liter and a half of IV fluids on Wednesday.   He had another two liters of fluids again today (Friday) after radiation, with an order to allow him to get more on Sunday if needed.  These fluids are helping him to get hydrated, and we notice a difference after he's had them, but unfortunately he's not getting a whole lot of nutrition from it.  Because of that Dad's scheduled to have a feeding tube placed next week.  Mom and Dad will meet with the surgeon on Monday to discuss options and verify the procedure as it's a bit different from the typical since they don't want to go through the stomach since they will be doing surgery there to "pull up" the stomach when they remove the esophagus later this summer. 

So nothing is too far from what the doctors and nurses expect, and we're all learning how this all works.  Please continue to pray for Dad, especially for strength and the ability to keep some fluid and nutrition down.  He's tired, as you might expect, but still keeping on with many things.  He replaced the garbage disposal earlier this week, he and I walked a mile and a half this morning before radiation, and he's continuing to try to teach me how to use my side mirrors to back into the garage (a losing battle I'm afraid, but we'll continue to fight the good fight at least until one of those side mirrors ends up on the garage floor.)

Mom asks that I thank the many of you that have sent such encouraging notes and comments.  They mean so much to all of us.  She asked that I let you know that some day she will respond to you directly to let you know just how much.  She's practicing as I type this and I'm hearing a beautiful version of "Day by day" while Dad is working on his sermon for Sunday, or e-bay transactions, not quite sure which.

We're looking forward to the weekend, a day of rest and preparation tomorrow, with church on Sunday.  I'm hoping to get a few hours of work time in tomorrow as Monday will likely be a full day in Everett.

First Day

Today was Dad's first day of chemo and first day of radiation. Both seemed to go OK and Dad was able to drive himself back to Stanwood.  He'll go back again tomorrow for another dose of radiation, but it's only supposed to be a 10-15 min procedure.  Radiation will be every weekday for 28 days.  Chemo is a total of 6 rounds, one day a week.   Dad will have some tests (PET scan and pulmonary function test) and meet with the surgeon again in early August to see where he's at after the treatments and will schedule surgery accordingly.

I booked my ticket today for Washington for next Tuesday (June 19) and am planning on spending the next couple of months out there to help with driving and whatever else needs doing.  The ticket I got for a week away was a better deal than anything else for the next 4 weeks.  I met tonight with a good friend from college, Bobbi Jo and her husband Willi who just moved to town this weekend but can't close on the house they bought until August 1, and so it is almost scary the timing and how it will work out ideally for all of us for them to have a place, and me to have someone house sit for the next month and a half.  I think we worked it out for them to "move in" Sunday afternoon, and then I'll fly out early Tuesday morning.
 
Things are moving quickly here but so many things falling into place that I know God has arranged events long before we even knew the word adenocarcinoma.  It is truly great to see His hand at work, and such a reminder that he is in control in all situations.  I'll post more when I get out to Washington or when I  know more.  Is there anything in particular you're wondering about or would like me to address here?  If so, leave a comment and let me/us know.

June

Things are progressing quickly in Washington. Dad met with Radiation Oncology yesterday in Everett and did the preparatory work to start radiation next Monday (June 11) and chemo on Tuesday (June 12) both in Everett. They meet with the thoracic surgeon at the University of Washington in Seattle tomorrow and will probably know more about dates for surgery then. The rest of this week includes a liver scan and larynx scope to both rule out spread of the cancer and do some imaging prior to radiation.

Dad’s still feeling pretty good overall, although as much trouble with eating as always, and still not always sure what’s going to work for food from one day to the next. Oncology told him yesterday that it’s likely he’ll feel OK going through stuff next week, and that if he’s feeling OK in the morning when he comes in, he’ll likely feel the same as he leaves, potentially enough to drive.

I (Sara) am hoping to be cleared to work from “home” which will allow me to be out in WA this summer and still put my hours in. I am so grateful that I have this new job that started in January that really does allow me to do what I do from anywhere, and even really anytime. Not quite sure yet how it will all play out, but starting to look at tickets for the end of June.

Update

I spoke to Mom and Dad last night and was happy to hear that Dad has an appointment with radiation oncology in Everett on June 4, and an appointment with the thoracic surgeon at U of Washington that Dr. Nichols at Mayo recommended on June 6.  I think that both of these appointments will give them a better idea about when they'll be able to start the radiation and chemo and maybe a proposed plan for sugery afterwards.

Home

Not a whole lot to report, but I talked to Mom last night, and she let me know that they made it back to Stanwood yesterday.  The trip went fairly well, and they got a chance to spend some time with Grandma in Jamestown, and saw Tim and Jan, as well as some Dalbey's in Billings.  They'll be spending the rest of this week figuing out where and when appointments will take place. 

Heading Home

Just got back from a lovely evening with Andy's family.  Supper on the patio and an impromptu game of dictionary.  Mom and Dad are packing up and will start the trip back to Washington tomorrow after spending a couple of days with Nathan and family in Fargo.
Mom and Dad have had a busy week dealing with paperwork to deal with Washington state insurance and working to get records transferred from Mayo back to Washington. 

While it is not playing out how I had hoped it would, Dr. Nichols, the thoracic surgeon at Mayo has assured us that Washington (particularly the University of Washington) has good care for esophageal cancer and that proceeding with care as outlined here in Rochester (6 rounds of chemo and radiation and then surgery to remove the esophagus) was a good option and could be done there as well as here.

Dad's still feeling good, and able to eat most things he wants to.  They will be taking their time driving back and Dad assures us that he's feeling good to drive. They are pretty sure that they will be able to begin treatment in Seattle or Everett in early June  Once we know more about when and where Dad will be getting treatment, I (Sara) and the boys will probably make some plans for trips to be helping out, but of course we won't really know plans until we know both when Dad's starting treatment and how he reacts to the radiation and chemo. 

Andy's family is reading through Daniel, and we were able to join them in reading Daniel 6 tonight.  The chapter concludes with the words of King Darius after seeing God rescue Daniel from the lion's den.  These words were a reminder to me that God uses seemingly impossible situations to bring glory to himself, and that it is indeed a privilege to be a piece in God's work.
"Peace be multiplied to you.  I make a decree, that in all my royal dominion people are to tremble and fear before the God of Daniel,
   for he is the living God,
     enduring forever;
  his kingdom shall never be destroyed
     and his dominion shall be to the end.
  he delivers and rescues;
     he works signs and wonders in heaven and on earth,
  he who has saved Daniel from the power of the lions."

Tests

I found this video educational.  Dad has undergone most of the tests/scans discussed.
http://youtu.be/pIVWNjIOmd4

Monday

So, a busy couple of days.  Dad met with the GI doc and surgeon on Friday who went over the results of the endoscopy and ultrasound.  They were not able to put the scope as far down the esophagus as they would like, but from what they were able to determine, the esophageal tumor is a T3 (The tumor has advanced through the entire esophageal wall) and the surrounding lymph node is at an N1 stage (Cancer has extended to nearby lymph nodes).  I found this link helpful in discussing some of the different staging of esophageal cancer if you are interested
http://www.healthcommunities.com/esophageal-cancer/staging.shtml

With this, the recommendation from the surgeon was to proceed with meeting with Oncology and likely 6 weeks of chemo and radiation to prepare the esophagus for surgery to remove the infected part of the esophagus and pull the stomach up to connect with the upper portion of the esophagus.

Dad and Mom met with the Oncologist and radiation oncology this morning (Monday) to discuss next steps for the radiation and chemo and they confirmed some of the tests and treatment options as discussed on Friday. 

However, they met with the Business Office on Monday afternoon, who told them that because they were not Minnesota resident and uninsured, and because treatment options are available in Washington, that they are not able to continue treatment here unless they are able to pre-pay for the treatments.  Not what any of us wanted to hear, to say the least, but they did give some advice for working with hospitals and insurance companies in Washington.  Understandably, Mom and Dad are not sure exactly what this means for next steps. 

Thank you to all of you who have been praying for us.  We know that God hears our prayers and will answer them according to his good will.

I'll update more as we know it.

Essence of Esophagus

I've decided to bring back Essence of Essie to keep people up to date on how Dad is doing, since posting some of this stuff on facebook just doesn't seem right.  I hope that this will be a place to answer some of your questions, and most importantly let you know how you can be praying for Dad and Mom right now.  I know that they wish they could talk to each one of you and keep you up to date, but it has been a whirlwind of activity the last week and are only just beginning to have a sense of what is going on.

Last Tuesday Dad had an Endoscopy at Everett Clinic (in Washington) and tissue biopsy of his esophagus because of some issues he's had with swallowing and weight loss.  The result of that biopsy showed  esophageal adenocarcinoma and evidence of Barrett's esophagus (a disease associated with acid reflux and irregular cells in the lower third lining of the esophagus.)  The recommendation for next steps was to have a PET scan to determine how far the cancer had spread.  Because the PET scanner in Everett was down and Dad would not be able to get into the hospital in Seattle for a couple of weeks, I made some calls and was able to get Dad an appointment at Mayo this week.  I flew out to Washington Saturday morning, and Mom, Dad, and I took off after church on Sunday to drive to Rochester. (A long fast trip with great weather and roads).

Dad (and Mom) met with Dr. Ravi, a GI Consultant, Wednesday morning, and he got Dad in for a PET scan that morning.  Yesterday afternoon they met with Dr. Ravi again to go over the results of that PET scan and received the very good news that the cancer has not spread outside of the esophagus.  Today (Thursday) Dad had an endoscopy and ultrasound of the esophagus to determine how deep the cancer goes.  This is a small camera (scope) with the ultrasound "machine" wrapped around it that is sent down the throat to allow the radiologists to view the inside of the esophagus.  Once the doctor and surgeon have had a chance to review these pictures, they will be able to advise on next steps for Dad. 

Next steps almost certainly involve surgery to remove the portion of the esophagus that is cancerous and then pull the stomach up to attach to the remaining portion of the esophagus.  Most likely there will be 6 weeks of chemotherapy and radiation before hand to prepare for surgery, although there is a slim chance that Dad could go right to surgery without the chemo if the cancer has not spread too deep or too high into the esopohagus.   Dad and Mom meet with the surgeon tomorrow afternoon to review the results of the ultrasound and discuss next steps.

Dad has been feeling pretty good, but has had to be careful what he eats - soft foods and soups, and take his time when eating.  However, after a long day of tests and discussions yesterday, he still spent an hour and a half doing yard work when he got back to my house, and who am I to stop him from doing what he wants :-)  There are a lot more questions than answers right now, but Dad knows who holds the future, and is trusting that God will continue to exhibit His glory through all the moments.  Your prayers for peace, trust, and wisdom are coveted.

Just checked with Mom to make sure there were OK with my posting this, and got this message back from her  
I just walked into the "computer" room to open this up, and what did I see but your father's face looking through the window.  When I asked him what he was doing, he told me that he was removing a wasp's nest. They told him he couldn't drive or operate heavy machinery today, nothing about climbing ladders to the second story to deal with wasps, though.

I'll post more as we know it.

For those of you who are interested, Mayo has some decent information about esophageal cancer, Barrett's esophagus, and some of the tests here
http://www.mayoclinic.com/health/esophageal-cancer/DS00500