Dale Johnson Funeral

Saturday, August 26, 2006

Iron River Community Center, Iron River
9:30 AM Visitation
11:00 AM Funeral Service
12:30 PM Lunch

Barronett Lakeside Cemetery, Barronett
4:00 PM Interment Service

In lieu of flowers...

Grace Baptist Church Building Fund
PO Box 356
Iron River, WI 54847

~ or ~

Wood Lake Bible Camp
22460 Assembly Road
Grantsburg, WI 54840
woodlakebiblecamp.org

Directions - Iron River Community Center
From the west:

Drive to Iron River via Highway 2
Turn Right on Civic Center Drive (will be past Hwy H and almost through town)
The Community Center is off to the left behind the VHW. It has a green roof.

From the east:

Drive to Iron River via Highway 2
Turn Left on Civic Center Drive (will be just past the fire department as you’re coming into town)
The Community Center is off to the left behind the fire department. It has a green roof.

click map for bigger view

Directions - Barronett Lakeside Cemetery
From the north:

Go south on Hwy 53
Right (south) on Hwy 63 (you'll go through Spooner and Shell Lake)
Right on Brickyard Road (next road after County J)
The cemetery will be on the left.

click map for bigger view

running to catch a sunset

Tonight I went out to watch the sun set. I saw that it had a way to go before setting, so I decided to run to my favorite gravel pile (can you have a favorite gravel pile?) to watch it from there. I'm usually more of a rambler than a runner, but this time I ran pretty much the whole way only to miss it when I got to the top; the sun had already sunk below the trees. I sat there and watched the sky change colors and thought about Things.
(ok, Amy liked this post, so when I showed her "the" gravel pile, she wanted me to climb it so she could take a picture. Here it is!)

Thing the First: You.
I didn’t realize, when I started logging this sequence of events, how much it really would become a tribute to my Dad because of all you had to share about him. I hope you realize how much it’s meant to Amy and to me to receive your responses, prayers, memories, and encouraging thoughts throughout each day. We treasure them, and I’m guessing others who were close to my Dad find them equally as encouraging. I like knowing they’re “captured” – that I’ll be able to go back again later and re-absorb them. Thank you.

Thing the Second: missed sunsets.
I’ve thought of many things I wish I had done for or with my Dad while he was still around. I’m dealing with the messiness of unanswered questions, unresolved problems, unpreached sermons, unharvested gardens… and lots more things. Unbuilt houses, unexplored woods, unhunted deer, and unmet people in need. I struggle with grieving. I know I have so much to be thankful for, and yet it’s hard not to focus on the loss. Do I celebrate that I “got” 54 (well, 32) years with him on this earth, or do I weep at knowing I don’t get him till he’s 90? Do I smile about the last few years of improving relationship with him, or choke at the idea that if I get married, he won’t be at my wedding or meet my kids? Do I rejoice that he’s in heaven, or ache that I’m probably still on this earth for a while yet?

Here are the thoughts I was able to glean from the gravel pile and the beautiful fading sky: he left this world, as far as I can tell, at peace with everyone so far as it was up to him. I say this to you who are grieving and to myself: he left with great love and few regrets. He would not want us to kick ourselves for opportunities missed. He would want us to celebrate what we had, and then, I think, to pick up where he left off. Tonight, the sun was gone and I could see only the colors that it left in the sky. But tomorrow the sun will return, and I think I have some woods to explore and people to connect with and love. Any volunteers for the other stuff?

rough details

Oops! I modified this post to include all the details, and moved it to Saturday, but I forgot about the comments! I don't want to lose them so I'm re-posting this with the comments from Tuesday.

gone

Late last night I was sitting in the office (where Dad's hospital bed is) finishing up on the day's blog entry, when Amy came in to check on him. She asked me to come and feel for a pulse - I did, and he was gone.

We cried.

We called Hospice and while waiting for the nurse (and later the funeral director) to come, sat next to Dad's body. We talked and read some of the verses that he had highlighted for us over the last few months. Here are a few of them:

Psalm 119:112 My heart is set on keeping your decrees to the very end.
Psalm 146:2 I will praise the Lord all my life; I will sing praise to my God as long as I live.
Psalm 146:7b,8 The Lord sets prisoners free, the Lord gives sight to the blind, the Lord lifts up those who are bowed down, the Lord loves the righteous.

We're planning to have the visitation and funeral here in Iron River on Saturday. As we confirm more details, we'll post them here. One thing we have discussed: in lieu of flowers we'd like to have gifts go to the Grace Baptist Church building fund or to Wood Lake Bible Camp.

I wasn't thinking...

... when I created this site. I mean, I didn't think through all of the implications of doing so. That (barring a miracle - which I really do believe in!) I'd basically be chronicling bad news, then worse news, then worse news again regarding my Dad's time here on this earth. I guess I thought more of not wanting to lose moments than what a downer it might become. Don't get me wrong; I'm not regretting it - it just becomes increasingly difficult to write without having this simply being a log of the loss of one thing after another.

That being said, I do have significant losses to report. While each day lately has marked some decline, that decline has been significant over the last few days. He went from no longer being able to walk on Friday, to having difficulty talking yesterday, to mumbling this morning, to being pretty much non-responsive this evening. His skin is clammy today, and he is clearly bothered by getting shots now (was he "toughing it out" before? Or is he more sensitive now?). The Hospice nurse is thinking that he has a week or less with us here.

I do still have neat moments to record, though. My friend Tom came up from Appleton to visit me on Friday, and we noticed a hummingbird out in Amy's flowers. So we went out and waited, and in spite of the 3 (gajillion?) second delay on my digital camera's shutter, were able to get a shot of this one. Can't see it? Well, below is the poor quality zoomed-in version. My apologies to those of you for whom hummingbirds are commonplace - I probably get a little too excited about them. We came in and caught Dad in an "alert" mode he answered our questions about whether they are really mean and why. Funny - I had no doubt that he would know the answer to that one....

Even sweeter - as he was losing words on Saturday, he would with great effort say certain things that Amy and I never want to forget.
(to Amy) "With your care, I feel safe. Without you, I don't know what I'm doing."
(to me) "I don't know what's going on, so you're going to have to steer me through."
He kind of cracked us up when the Hospice nurse went into kind of a long explanation about a shot she was going to give him. He turned and whispered loudly to Amy, "I don't understand." Basically, trying so hard to be polite to the nurse, but looking to Amy to bail him out on any necessary response to what was going on.
Those of you who know how on top of things he always is will understand why these words are so poignant and painful and priceless to hear.

And best of all, "I love you a hundred times a hundred times a thousand. Human words just aren't adequate." We heard variations of this, in shorter and more mumbled form as long as he could speak.

We love you, too.

sketches

Today Dad seemed to fade quite a bit. He spent most of the day asleep on the couch, although he was alert for several 10-minute stretches. When he sleeps now, his eyes don't close all the way.

People have been incredibly thoughtful and kind throughout this whole business - there is no way Amy or I can express how much each prayer, each kind word, each thoughtful act means. So while I can't individually or equally thank each person for each act of kindness, here are a few events of the last few days for which I have pictures, and so would like to highlight:

Sketch 1
A group of guys from the church is planning to come on Saturday to put siding on the garage (woo hoo!) so Keith Klobucher has been coming over most nights this week, to get it ready to go.



Sketch 2
Mark Roth drove through the night to spend a few minutes with Dad. Dad remembered he had a water bottle of Mark's that he'd wanted to get back to him, so - although he's been on the couch almost entirely lately - hopped up and headed over to the garage to find it. Amy snapped this picture of them on the way back.



Sketch 3
Jeff and Heather Hahn and their two boys stopped by. When Dad saw baby Zachary, he asked to hold him for a moment. Zachary didn't see anything the matter with him (oh for the eyes of little children!). He thought the NG tube would be fun to grab, so spent most of the time on Dad's lap being strategically diverted.

It's been amazing to read and hear stories about my Dad - to see sides of him I never knew he had, and to flesh out the likeness of a man who soon may exist here on earth only in the collective memories of us who love him. Until heaven, these are what I will hold when I think of him. Thank you for all that you have shared back with him, with Amy, and with me.

cadence

Well, things are settling into a bit of a rhythm for us here. We're becoming NG tube experts (first flush the first stage of the tubing. If that doesn't work, flush the second stage. If that doesn't work, try warm water. If that doesn't work, try just drawing on it. If that doesn't work, cut the tape attached to his nose, pull it (gently) off the tube, and have him adjust up and down till something gets things jump started again. If that doesn't work, start over at the beginning! And pray - and realize you should have started there!). We've also found that he has a heightened sense of smell (he smelled my hair gel when I put it on in the next room this morning), and here's a big one: Pepsi seems to work the best on hiccups. Who knew?! I do better at night because I can easily fall back to sleep, so Amy covers days.

The rhythm can be deceiving, though, because there is a progression. He's looking thinner every day, which doesn't seem possible. To be expected when his stomach isn't accepting nutrition or hydration, but really hard to watch in slow motion. He's still "with it" when he talks to us, but can't remember some things very well (like the king crab last Friday). His sense of humor is still there - and we'll definitely take as much of that as we can get!

Yesterday, Amy had a nice quiet morning, and to get a change of pace I went with her friend Roberta on a hike to the sea caves on Lake Superior with the Oulu 4H troop. We had a great time, and it was nice to see another beautiful corner of the world and talk to Roberta and the kids of "shoes and ships and sealing wax, of cabbages and kings".

We saw a bear outside the house this morning - a yearling who was checking out the watermelon rinds in the compost pile. I tried to get a picture, but it scrammed before I could catch it. And hummingbirds have been continually buzzing around the house - Amy's got flowers there that attract them, no feeder needed! I may try to get a picture later - if I do I'll post it.

Thank you and thank you again for the loving cards, comments and e-mails.

home again, home again, jiggity jog

Well, it's been a roller coaster. Not a kiddie roller coaster. One with its fair share of sharp turns and the sudden drops that make your stomach flip. Dad is home now, and relatively comfortable, but we've had quite a few challenges getting him to that point. I'll share a few of high points, and ask you to pray for the low ones (and that we'd know how best to manage them), and leave it at that.

High Point #1: King Crab! Friday night I ran over to Red Lobster and picked up an order of king crab. We mowed into it and enjoyed ourselves quite ridiculously. The nurses smiled and were tolerant of our childlike excitement.

High Point #2: Getting him home. Beth (Amy's mom) was there Friday night to receive all the home care equipment (hospital beds and whatnot) and to get instructions on how to use it. Augusta (Amy's daughter) and Chris (Augusta's husband) arrived Saturday and have been helping out with all sorts of things. Saturday evening the four of us took off for a visit to the mouth of the Brule River. Here's a picture of what we saw on our return. :)

Your comments, e-mails, and prayers continue to be greatly appreciated. We're quite overwhelmed, so appreciate sensitivity about calling and visiting. Each day brings its own set of new challenges and adjustments so it's hard to know how things will be even 24 hours from now. Blessings to you all.

Friday update

Today was a quieter day; a few visits from friends and family and quite a bit of dozing off. We all went on a walking adventure to the 7th floor solarium for a good view of the lake.

Dad's brother & sisters have all been up to see him this week, along with my cousins Tim, Shellee and Renee. It's been really neat to see them, even though it's been under bad circumstances.

We had hoped he could go home today, but there were several scafuffles with trying to figure out the best way to set up home care. The upshot is that he'll be coming home tomorrow, on hospice. Everyone here has been great, but it will be wonderful to have him out of the hospital.

about dying...

I talked to my dad about dying last night. He was groggy and would drop off to sleep, then awaken and continue the conversation. I asked him if it was sad to think of things he would no longer be doing. He said not really. That he realizes those things are there, but that he has so much good to look forward to in heaven, that those things don't really mean much. He's sad about Amy and how hard this will be for her. And for us. But he's truly not sad to be going.

There's a chance he'll be going home today - we'll see!

overcast

Today it's cloudy and windy in Duluth. The waves are whipping across the bay, and people are bowing their heads as they head into the wind. Dad is groggier and in a bit more pain than he was yesterday, but we still had a nice morning.

He went in to get a PEG, but there was just too much cancer in there. Dr. Avello tried, but he couldn't find a spot with a clear path for it, and he didn't want to hit an intestine or anything. So it's an NG tube for us - not fun, but still much better than the vomiting, pain and nausea he'd be dealing with otherwise.

Given the lack of stomach function, and the amount of cancer that Dr. Avello found with today's attempted procedure, the timeline is looking like it's a matter of weeks. Dad's doing well considering the news. It's hitting us pretty hard. Thank you everyone for the continued love and care you are showing. It's been good to read the comments and to receive your e-mail messages.

entertaining

Today was people-day! There were people there when we got there and when we left, and in most of the spots in between (family, friends from the church in Iron River, and Amy's mom, Beth, from Ohio). It's pretty much a long trip for anyone who comes, so it was sweet to see the care, concern and love people showed by being there. Thankfully, he was feeling fairly well for most of the day, so was able to enjoy everyone.
Unfortunately, he was not able to keep the food in. After he ate, the pressure, pain and nausea started building until the NG tube was turned back on. He wasn't feeling well enough by evening to try eating supper.
Dr. Avello, the GI doc, stopped by in the early evening. He is willing to put a PEG in, even though they're usually used for putting food into the stomach rather than taking stuff out. They will just need to figure out the best way to set that up so we can manage it from home. It should be significantly better than the NG tube for comfort and mobility. There's a possibility, however, that there won't be a place in the stomach clear enough from cancer to put a PEG in - if you're a praying sort, please pray that there is! Dr. Avello rearranged his schedule and should be able to do the procedure at 2:00 PM tomorrow. We're hoping to be talking with Hospice and the doctors soon about getting him home over the next few days; each day is a new story, though, so we don't know how things will develop from here.
Beth and I took a break in the afternoon and visited the rose gardens and the little gelatto shop that Dad and Amy had visited earlier on their "escape" day before the surgery.



'Nother side note to you lovely patient people who have tried to leave comments. You don't need to create a user name and password to leave comments, I'm just sorry it's so confusing to avoid doing so! After you've typed in your comment, under "Choose an identity" choose "Other". Then you can just enter your name if you like and hit the "Publish" button.

green jello

What with all the "factual" stuff I was trying to convey last night, I forgot to mention that he started feeling somewhat better as the day went on. They had put a new (bigger) NG tube in, and that seemed to get clogged less and keep him more comfortable (stomach-wise if not nose-wise).

This morning he's feeling even better. Dr. Powell stopped by and thought it would be good to cap the NG tube and try him on a clear liquid diet. He had a few bites/sips and it was good to see him at least having food in front of him. So we'll see if his "gut" kicks in here!

NGs, IVs, PEGs, and GIs

Dr. Repka, the oncologist, stopped by late this afternoon. The upshot:

• Dad did not respond well to chemo. The first round was about as hard a dose as he could take, and it did NOT help him in any substantive way. Dad is leaning toward not resuming chemo at this point. He would have to have round after round of chemo in order for it to have an effect on the cancer - and even that is uncertain.
• Nutrition won't help him right now, nor will having nutrition significantly affect how much time he has. The cancer is the problem - it is suppressing his appetite, and it is what will "get" him, not lack of nutrition. It would be nice if his "gut" (as she called it!) started working again, so he could eat, but that's more for quality of life than to prolong things.
• When they removed the fluid from his abdomen (outside the stomach) today, I think our hope was that he would get great relief. However, they only were able to take out 1 liter of "stuff" - good, but not enough to give him the kind of relief we were hoping for.

Best options at this point for managing the symptoms are:

1. Keep him hydrated, which has to be through IV at this point.
2. Keep stuff from building up inside his stomach, especially if it continues not to function. An NG tube is doing this now, but we'll meet with a GI doctor tomorrow to look at possibly getting a PEG (peritoneal something gastroectomy or some such thing) that would allow him to drain his stomach as needed without having a tube sticking out of his nose.
3. Keep stuff from building up outside his stomach - like it was today - as needed.
4. "Manage" his pain and nausea through all sorts of interesting drugs.

1, 2, and 4 can all be set up to be done at home with the help of Hospice, so I'm assuming tomorrow or the next day we'll start looking at options for getting him home sometime here.

For the time being, I'm planning to hang about the place and continue plaguing doctors with questions. (Don't worry - Amy says she is thrilled - and she's helping me type this!).

Note: I just figured out that the Comments section was requiring people to create accounts before it would let them leave comments. Sorry about that! I've changed the settings, so you can now leave comments if you like without registering.

Tuesday morning update

Dad had a good night (yeah!), but they're having problems with the NG tube working effectively. So about 8 or 9 this morning he started having more pressure building up and pain.
Dr. Powell came by. The results from the CT scan show a huge amount of fluid collecting in the abdominal cavity - it's even getting up into the lungs. This kind of cancer produces a lot of fluid. He thinks this might have an impact on the stomach & intestine function. Later today Dad will get that drained off. Dr. Powell hopes that that would allow the digestive organs to re-start function (perhaps within 12-24 hours). If that works, he might be able to eat something tomorrow. (The last bite of food he had was Friday - we're not sure when he last had food he was able to actually keep down). Dr. Powell isn't sure how long it would take for the fluid to build up again; it can be drained off again if it does.

The CT scan doesn't show any change in the cancer.

they say it's your birthday

Well, Dad's birthday did not get off to a stellar start. This morning we learned that Dad had not had a good night; his NG tube got blocked, so he had major pressure build-up as the night progressed. His pain was at an 8 or 9 by the time they flushed it and got him relief at around 9 this morning. We did sing him "Happy Birthday" over the phone - hopefully that improved the situation!

They took another CT scan this morning so they can get an idea of whether there are specific areas of blockage, and (preliminarily) it's looking like there aren't, but that the cancer is causing the stomach and small intestine to just shut down. This means that the nausea is probably more cancer-related than chemo related.

Dr. Powell spent some time with us this afternoon answering questions. We'll know more tomorrow when Dad's oncology doc, Dr. Repka, is in the office, and once a radiologist has had a chance to look at the CT scan. For the time being, we have stopped chemo - Dad just doesn't have the strength to take the next 7-day dose of the 5 FU.

I asked Dr. Powell if this were a member of his family, what time frame he thinks he'd be looking at (acknowledging that this is a very difficult question to answer). He said realistically he would be thinking 4 weeks to 3 months. He gave us some possible options for addressing the disease and symptoms, not because we're at a point of making decisions quite yet, but because he wants us to be aware of the types of decisions we may be running into shortly - even tomorrow. Basically, it's not looking good. He made a comment that at each point in this disease's progression, the worse case rather than the better has been what has happened. That there isn't a way to truly compare the painfulness of different people's situations, but from his perspective ours is about as difficult as it gets.

I gave Dad & Amy a belated anniversary present, and then Amy and I both gave him birthday presents. He liked 'em! So I think he'll keep us around for a while.... If only we could do the same for him.

nausea ad nauseum

Amy didn't sleep well last night. She woke up at 1:00 AM and was worried about Dad, so called to check on him. She finally got a little sleep early this morning. When we got to Ashland, Dad was coughing and vomiting. He had a pretty miserable night. We talked to Dr. Cunningham about transferring to St. Luke's back in Duluth, since that's where the oncology center is that he's been working with, and he has appointments with them tomorrow anyway. He was also feeling better than he had all night (see photo), and thought it would be good to take advantage of that window. So they discharged him and Amy and I brought him over in the car. The doctor on call - Dr. Powell - is Dad's doctor at St. Luke's, so he already knows Dad's history.

We really hope the cancer starts responding to the chemo and receding soon, because Dr. Powell is pretty sure that the cancer is at least part of the nausea, it's still affecting the stomach, and it's probably affecting the bowels too. So it's going to be a challenge to get him out of the hospital if the only things we're able to address are the symptoms.

They gave him an NG (nasal-gastric) tube in the evening, and that got rid of a TON of gastric juices and bile that he had been vomiting most of last week. He felt immediate relief from the pressure and nausea that had been plaguing him and keeping him from sleeping and generally making life completely miserable for the last few days. We left him sleepy and much, MUCH more comfortable. Hopefully that means Amy will be able to sleep tonight too!

dehydration and nausea and nausea and nausea

Dad was up all night; he was vomiting every two hours. Amy took him into Ashland to get more fluids, but he was so bad they ended up admitting him. I arrived around 2:30 this afternoon. It was good to be there, but hard to see him so intensely miserable. At times he can't talk, at other times he is racked with hiccups. Sometimes they ease up and he can carry on a conversation, but I can tell from his eyes that he's "foggy" and that the pain is distracting. Larry and Joyce were there for quite a while - it was good to have them there. Amy and I went out to Deep Water Grille for dinner on their recommendation, and it was marvelous. We went back to be with Dad a bit more, but left to head to Iron River somewhat early as both he and Amy had slept very little and were exhausted.

dehydration AND nausea

Amy took Dad into the oncology clinic St. Luke's for IV fluids because he's not able to absorb them through the stomach. He hasn't been able to eat or drink, and has been fighting the nausea constantly. They also did chest x-rays while he was there. They set him up to be able to go to the hospital in Ashland, which is closer than St. Luke's, if he needs more IV fluids.

nausea

Called Dad today; his nausea was so severe that he had to hang up on me. He called back later after he had vomited & felt somewhat better. It's killing me to hear him suffering and to be at a distance and not be able to help in some tangible way.

crummy chemo

Dad was up a lot last night; couldn't sleep because of the nausea and cancer pain. He got up to vomit once. He was feeling better this morning, but still had pain.
We discussed when I'd come to visit him - I think I'll go up for an extended weekend, and take off either Friday or Monday.