“Then God” – A life shortened but changed by cancer

Forward

My husband, Jeff, was diagnosed with stage IV colon cancer December 2007 just after his 39th birthday.  We had two children, then aged nine and six.  It turned our world upside down.  For the next two years and three months our lives revolved around cancer and trying to live in-spite of it.  After a struggle that changed our lives and hearts, he passed away March 9, 2010.  This is a record of some of the pivotal moments in that struggle.

My faith is a gift from God.  It has come only as a result of finding His amazing grace.  His leading me through troubled waters has established my trust in Him.  I still stumble and fall and the waters seem to swell over me at times, but I know my life is covered with His.  I am saved, and He is saving me still.  He is finishing His work in me as He did in Jeff.  I am on a journey where I can believe that come whatever may, Then God.  He is there.

Dear reader, trust your life to Him.  Search for Him and you will find Him.  Walk with Him and He will be your guide. Whatever life throws your way, Then God.  He will work it out for your eternal salvation.  The things we see are temporary.  What He has waiting is eternal.  Get established in Him now before the storm of your life washes you away.

Then “God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away.”  Revelation 21:4 NKJV.

Are You Ready for This?

December 2007 Jeff was having some strange complaints.  He’d been having complaints for a while.  His stomach hurt, very severe at times – thought it was an “ulcer”.  He was buying pants with a larger waist size- thought he was “getting fat”.  He didn’t have as much energy- thought he was “getting out of shape”.   He’d gone hunting alone and had hardly been able to get his elk out to the truck.   He got winded very easily.  He came home from work and sat on the couch more often than he felt like working on projects.  That wasn’t like Jeff.

December 17, the same day we deposited earnest money on a new office building, Jeff got out of bed in the morning, got his towel from the closet where he hung it, and walked out the bedroom door to take his shower.  Next thing I heard was a thud.  I flew out of bed to find him laying half in the hall and half in Estelle’s room.  I then asked a most profound and thought-filled question.  “What are you doing?!”  He kindly overlooked my stupidity and said he must have just gotten up too fast. OK, off to the shower he went.

I went back to bed and started musing over all those complaints.   Hmm…. it wasn’t making sense.  There were too many complaints.  So I made a request. “You know, it’s been a few years since we’ve had our blood drawn.  You can get the health fair blood screening any time of the year now.  Twenty bucks or so and we can just make sure everything is A OK.  How about it?  Skip breakfast this morning, I’ll bring you something to eat when I come in, and let’s see what’s up.”   It wasn’t his idea of a good morning.  By that time he was sure the dog had tripped him up since she liked to lay in front of our door.  He had just fallen over the dog.  No need for blood tests.  But, he agreed to do it if that would make me happy.  I thought it would.  So he did.

The next day I was having clinic in Worland at Dr. Weaver’s office. He happened to come by his office to do paper work that day. I updated him on Jeff’s latest.   We hadn’t gotten his labs back yet.  “Well, why don’t you just call and get those faxed over here and I’ll take a look at them.”  So I called and requested the results – pulling a few doctor strings – rather than wait for them to come in the mail like most people.  The lab faxed them to my office instead of Dr. Weaver’s office so Jeff actually got them.  He called me to let me know they were on the way.  I watched as they came out of the fax machine, still talking with Jeff on the phone.  “I’m fine, aren’t I?  Told you there is nothing to worry about.”  “I have NO idea what is wrong, but you are SO NOT fine!!  Something is going on.  Your labs are WAY out of whack!  I’ve never seen any labs that look this bad.  Let me talk with Dr. Weaver and see what he wants to do.”  We decided to have Jeff come to the hospital Friday to have an endoscopy.  He must have a bleeding ulcer. His hemoglobin was about half the usual along with a whole bunch of other abnormalities.  Easy fix.

Wednesday morning I decided we should check his labs again.  “I’ll go with you.  I haven’t had my blood drawn in a while either.  We’ll skip breakfast together.   And if everything is still about what it was Monday, we’ll wait till Friday.  If not, we call Dr. Weaver.”  Ughh!  I’m sure he wondered why he was married to a doctor at that point.  He reluctantly agreed.  But, really, he was fine. “That’s great, Honey.  Glad you are fine.  But we’re getting our labs drawn.”  This time I requested they fax his labs right away.

His hemoglobin had dropped half a point since Monday.  I called Dr.Weaver.  “Get up here this afternoon.”  We started calling patients to cancel appointments.  One of the patients in the waiting room overhead.  “Are you sick?” they asked Jeff.  “Well, I don’t think so but everybody else seems to think so.  Just have to prove them wrong I guess or they won’t leave me alone.”

I went to pick the kids up from school since Worland was 1 1/2 hours away. I had no idea when we’d be back.  It was a day before Christmas break was to start.  “Mom, what are we doing?  Why are you here?  What’s going on?”  A million questions with few answers.  “Dad’s going to have a test done at the doctor.”

We got in the car.  I drove.  We were winding through the Wind River Canyon.  He took my hand.  “Are you ready for this?” he asked. “I don’t know.  What is it?  If I knew what it was, I might know if I was ready.”  He thoughtfully paused and said “You never know what a day will bring.”

Follow Me

“The scope was normal.  No bleeding ulcer.  In fact, no ulcer at all.  Maybe a touch of gastritis.  I took a biopsy since I was there.  But it looked fine.  We’ll get him a couple units of blood tonight and run some tests in the morning.”

“What is chewing up his red blood cells like that?”

“I don’t know.  We’ll know more tomorrow.  You and the kids can stay in the hotel down the road tonight.”

“Jeff, how much do you weigh?”  Lots of questions while the nurses were checking him in to the hospital.

“165″

“Let’s have you weigh on this scale.”  “Hmmm… 150.”

I had to remind him of his new weight several times in the next couple weeks.  “But how can that be?  I’ve been buying pants with a larger waist?”  Another mystery.

They hung the blood.  Life.  Slowly dripping into his veins.  Without it, he surely would not have had long. The next day Jeff came back to his room after the CT scan.  “Doc stuck his head in the door after the scan was done and said everything was normal. I’m kind of disappointed actually.  There has to be something wrong.  If that test didn’t find it, how will they find it?  What could it be?  Why didn’t it show something?  What will they do next?”  Bless his soul, he always thought I’d be able to find an answer for him.  I had none.

“I don’t know.  Dr. Weaver is in surgery.  I’ll call the pathologist in Riverton and have her look at your blood tests and see what she thinks.”

She was a new pathologist in town and didn’t know me, so wouldn’t be as likely to do me a personal favor.  I have a strong dislike for pulling “Doctor Strings”.  People should treat everyone the same.  If you won’t do it for me because I am me, then don’t do it for me because of my title.  But my dislike for pulling “Doctor Strings” was less than my desire to know what was going on with Jeff.  I would call.  I explained the negative scan and asked for her thoughts.  “But… that can’t be.”  I argued.  “He doesn’t have a chronic disease.”  That was as far as she would speculate with me.

“Which radiologist read the scan?”  Jeff gave me a name.  ”Hmm… too
bad.  I don’t like how he reads his tests.  I’ll talk with Dr.Weaver.”  He was a good friend, but we still called him Doctor.

I went to the surgery waiting area.  “Hi.  I’ve tried calling Dr.Weaver, but he’s not answering.  I’m sure he’s in surgery. Could you just give him a message?  Please ask him to call me when he has a few minutes.  I’ll be in Jeff’s room.”

My phone rang not long after.  “Yes, Dr. Weaver would like you to come to the O.R.”   It was the surgery room receptionist. They took me to a pre-op holding area. Sterile. Curtain dividers. Not much privacy really.  Not much warmth.  It’s so different being the one sitting and waiting instead of being the one popping your head in to say hello.  It seemed like a long wait.  Dr. Weaver didn’t sit down when he arrived.  His usual smile was absent.  He just said, “Come with me,”  and started walking down the hall.  I followed behind.

“Did you read the scan?” I asked.

“I did.  I have something to show you.  Follow me.”

Staring Eyeballs

We went into the dark viewing room where the radiologists worked.  Just
the two of us.  He flashed through the images until it got to the liver.  I recognized the shape.  And I saw two bright eyeballs staring back at me, one on either end of the liver.  “The density of the tissue in those spots is not the same as the rest of the liver.”  No,
certainly not.  Then he took the scan lower into the abdomen.  “I’m not sure what this is exactly.  But it doesn’t look right.  I think there is something there.  I think Jeff has a mass in his colon and two lesions in his liver.  A more sophisticated machine that can take images of thinner slices could give a better picture.”  We sat and stared at it a
minute in silence.  “Those are going to need to come out.”  More silence.  “We need to go tell Jeff.  Do you want to tell him or do you want me to tell him?”  I still wasn’t sure what it was we were telling.  “You tell him,” I requested.  “Ok.  Let’s go.”

We walked down the corridor toward the patient rooms.  My head was spinning.  Sitting in the hallway was a lady I’d befriended over the course of the 24 hours we’d been there.  She was there waiting for her loved one to end a long struggle with cancer.  She
looked at me.  “What is it?”  she asked.  I just shook my head and stood quietly.  I didn’t know.  She rushed over and took my hand looking deep into my eyes.  “Is it cancer?”  I still didn’t know.  “He said he has a ”mass” in his colon and two “lesions” in his liver.  I don’t know.”  “Oh, Honey!”  She held me tight.

I went into the room.  Jeff was taking the news very stoically.  “So what’s the next step?” he asked.  “You’ll need surgery.”  “OK.”

Dr. Weaver left and we started to discuss our options.  We’d always gone to Denver for major health care needs.  Eight hours from home.  There was a nice condominium close to the hospital for people to stay in when family members were inpatients.  I could stay there. But with the kids, how would that work?  They couldn’t be expected to hang out in a hospital room all day.  And how long would all this take?  We weren’t sure.

We talked it over with Dr. Weaver.  “Treatment will be a while.  This is not going to be fast.  You will probably have chemotherapy after surgery.”  The nearest chemo treatment center from our house was two hours.  “Doc, I think we need to go to Lincoln.  We can get treatment at the University Med Center in Omaha and the kids can stay with their grandparents.”  He liked that plan.

I wandered through the hospital sometimes with no real purpose in mind.  Nurses stopped talking and looked at me when I went by, as if pitying the widow at a funeral.  The doctor who had delivered our son met me in the hallway.  “I heard the news.  I’m so sorry!”  He shook my hand.  “I don’t know what to say.”  I didn’t either.  I called my mom.  “Jeff has two lesions in his liver and it looks like a mass in his colon.”  She gasped and was quiet.  “I’m so sorry, Honey! I’m so sorry!”  I was starting to get the picture through the reflection I saw in those around me.  Jeff had cancer,  and it was bad.

I asked the nurses if they could get me on the internet.  Usually patients and families weren’t allowed on the computers, but, yes, they’d do it.  I looked it up.  Stage IV colon cancer.  It didn’t get any worse. I went back to talk to Jeff.  “It looks like you have colon cancer.”  “Did they catch it early?”  “No, unfortunately not.”

There was nothing more they could do for Jeff there that day.  But it was snowing hard outside.  “Why don’t you all stay at the hotel another night?  Go by the hospital in the morning and get your blood drawn then come over to the office while we wait for the results.  If everything is stable, we’ll send you on your way.”

Morning came.  The snow was piling up.  The Wind River Canyon road was closed.  We couldn’t go home if we wanted to.  We headed over to the office.  Dr. Weaver had been making some phone calls.  He knew someone who knew someone who was in Omaha.  He was one of the best gastroenterology surgeons.  He’d get us set up for surgery with him. But he wouldn’t let us leave until we also had an appointment scheduled with an oncologist.  We called Jeff’s sister, a nurse in Lincoln.  She knew someone.  Dr. Weaver talked with him.  A Loma Linda graduate.  Dr. Weaver approved.  The road opened in the afternoon and we were on our way back to Riverton with strict orders to get Jeff to Lincoln as soon as possible.  With the rate his hemoglobin had been dropping, there was no guarantee how long those two units of blood would last.

We were on edge.  Jeff didn’t feel well Saturday night.  He was light-headed.  We took the kids to the neighbor’s house and headed to the Riverton hospital to get checked out.  The ER doc tried to calm our nerves. “Listen.  You’ve been shook up.  I know this all seems sudden for you.  But this has actually been going on a long time.  His labs are bad, but they are much better than they were Monday or Wednesday.  Go home.  Try to relax.  You have a long road ahead of you.”

Jeff tried to concentrate Sunday and worked furiously at getting as much done as he could at the office.  His work ethic was incredible.  “How can we leave these patients?  There are people who are counting on you.  We can’t just close.”  “Yes, we can.  We put a sign on the door.  CLOSED.  This is not an option.  You are going to die, and soon, if we don’t leave.  We shut the door, lock it,and walk away.  That’s how we close.”

Sunday night we rendezvoused with his family on I-80 three hours south of our house.  His dad was driving his semi truck from Lincoln to the West coast and had brought a couple people along to help us out.  Jeff’s brother-in-law drove with Jeff, the kids and a few suitcases back to Lincoln.  I went back to Riverton with his mother to try and wrap up some more of business.  She’d stay with me and would be there to keep me company while driving to Lincoln in a few days.

By Monday noon, Christmas Eve, the phone rang.  It was Jeff.  “I need you here.”  “Ok.  I haven’t gotten a whole lot done since you left last night.”  “I know.  But I need you here.”  “Ok.  We’ll leave in the morning.”  “See you then.  Love you.”  “Love you, too.”

A Night of Pain

What was that sound?  Did I really fall asleep?  I can’t do that!  He needs me.  Wake UP!

It was the middle of the night.  Jeff was groaning on the couch in the bedroom where we were staying at his parent’s house.  He had had his colonoscopy that morning.  It had been anything but routine.  They had taken a biopsy but said there was no need to wait for the pathology report – it was without question cancer.  The mass appeared large
and was located at the cecum – where the large and small intestine meet.  The mass left such a small opening in his colon that they didn’t know how anything had been making its way through.  It had been an extremely painful procedure for Jeff.  My stomach churned knowing how easy it would have been for someone to give him a little more medicine so he wouldn’t have felt a thing.  Instead, he could recount to me the graphic details of the procedure.  And now his pain was worsening.  Calls to Omaha had been unproductive.  “Yeah, it will probably be a little sore.  No need to call unless he gets a high fever.”

I got myself out of bed and went to him.  “Hey, let’s go to the E.R. You need some help.”

“No. Sit down by me for a minute.”  He was starting to shake.  He took my hand.  “I think I’m going to die.”  “Yes… you might.”  “No, I mean now.  Soon.  Before I have surgery.  I think I’m going to die.”

Ours hadn’t been a fairy-tale marriage.  It had been real.  It had been life.  We had to work through things – they didn’t all come easy.  And now, in the span of about three weeks we had sold our office building, had an accepted offer on a new one, been diagnosed with terminal cancer, closed the practice, left our home 12 hours away and were living out of suitcases.  We were looking at colon surgery, liver surgery, chemotherapy, and many unknowns.  If you were adding up the stress score of our lives, it was high.  We had started our marriage without God being the center, making things all the more difficult.  But we had stuck it out.   Jeff was proud, I was stubborn, and God was infinitely more full of grace.  We had not only survived, but we had made countless incredible memories of happy times and had two beautiful children.  We were back on the road with our loving God who had never left us.  We had been walking with Him a few years now.  We were growing in Him.  And He is good.  We had learned to work through things before.  Cancer gave us the opportunity to learn to do it better.

Jeff wanted to talk about some of the things that hadn’t gone so smoothly.  He wished they had been different.  He was sobbing now and I was holding him tight, mingling my tears with his.  We stayed there until his storm passed.  Then I got up and put his shoes on.  “Let’s go now.  You need help.”

We left the house and I sped down the deserted roads as fast as I dared in the dead of night, my husband trembling in pain beside me.

The Man

Finally…I was well enough to go visit Jeff.  We had been through some very traumatic things, but our journey was just beginning.  Now Jeff was recovering from major surgery – resection of 1/3 of his colon with a grapefruit-sized tumor.  I had been at the hospital the day of his surgery….waiting.  As the day dragged on I began to feel worse and worse.  I imagined it to be stress.  It turned out to be the flu.  Shortly after Jeff returned to his hospital room after surgery, the nurse took me out to the car in a wheel chair with a “bucket” on my lap.  I was down and out for several days.  Now, finally, I was well enough to go see him instead of just talk on the phone.

He was quiet.  Unusually so.  But, he’d just had major surgery, was in significant pain, and was processing a lot of information.  Completely understandable.

”Let’s go for a walk,” he said after a while.  “They’d like me to get up and move.  Hopefully it will help me get out of here quicker.”

So, with IV pole in one hand and my arm in the other, he ventured out the door.  I was surprised how far he could go.  He seemed to be healing well.

”Let’s go down that hallway where there aren’t so many people.”

And as we went, he began telling me a story.  One he himself hardly knew what to believe.  But this is what he said:

“The other night when Bart was here, he was reading in the Bible.  I’d had some pain medicine….but I still heard what he was reading….I think I was alert.  I’m sure I wasn’t asleep.”  He’d had several days to think this over and still didn’t know quite how to say it.  He was searching for words – for an explanation.  His walk with God up to that point was on a very doctrinal, logical and factual level.  God was Almighty – not personal.  He didn’t have experience believing himself what he was about to say.    He looked around again to make certain we were alone.

“While Bart was reading, the room got very bright.  I saw a Man walk in my room and come by my bed.  The entire room was filled with this indescribable peace when He came in.  He was in white.  He didn’t say a word and I never saw His face, but yet He told me, “I will never leave you.””

And I believe. How about you?

The Third Spot

Caughtcha’ I thought.  THERE it was.  I knew it.  I had it written in my notebook from January 2008 but it had gone AWOL for more than a year.  The first PET scan showed  THREE spots in the liver- one in each lobe and one at the inlet.  The MRI showed two -one in each lobe.  Two spots had been surgically removed.  It was assumed that the third bright spot on the scan was caused from some residual trauma that must have occurred during colon surgery.  But here we were looking at it again.  The devil in black and white.

“Let’s let it sit for a little while.  Your counts aren’t that high. Obviously it didn’t respond to chemo before, so hitting you with more of the same wouldn’t make a lot of sense. And, it’s in a spot that nobody would touch surgically.  Well, I’m sure you could find someone who WOULD, but I wouldn’t advise it.”

Summer 2009.  We’d opened a shoe store about 2 months prior when we’d heard the big “R” word – “remission”.  The doc told us we should wait 6 months at least before investing in a shoe store.  Well, what do you do at a yellow light?  Go faster or stop?  “Wait” sounds like a yellow light. We opened a shoe store.  His labs started climbing before we actually turned on the neon “Open” sign – but we were already committed.  It gave Jeff a reason.  We “sat on it” for a while.  And his numbers went up prompting the MRI that showed the allusive spot.

Jeff had already decided he wouldn’t do anymore chemo.  Only trouble was, he’d also decided he didn’t want to do that liver surgery again either. It had been a killer.  But now, well, now he was looking at a real killer and he had to rethink his plans.  Do nothing- die.  Do chemo- why?  It hadn’t killed this spot, why do more?  Do surgery- maybe so.

We made appointments with two surgeons.  Our first visit was with the surgeon who had done Jeff’s initial liver resection.  He’s a man of few words.  He holds his chin and ponders a lot while he’s in the room.  He pulled up the MRI and we went through it slice by slice. He didn’t think the lesion was a part of the liver.  He was pretty sure it was a lymph node.  Good news!  But, if it was in the vein at all, he wouldn’t touch it.  “High-rent territory” he called it.  Too much high-stakes stuff going on there.  All packed in a tight space is the artery, vein and bile duct.  And Jeff’s liver was probably not healthy
enough to withstand the interruption in blood flow that would be required to remove a lymph node from the vein.  That vein- about as big around as your thumb and filled with blood.  That’s a big vein.  He wasn’t willing to mess with it.  Too risky.

We went to the next surgeon.  He was a charismatic fellow and not much older than us.  He went through the MRI slice by slice with us.  He was certain the mass was part of the liver, and undoubtedly it was invading the vein.  That seemed pretty clear with the areas he pointed to on the MRI.  And, yes, it was “high-rent territory”.  But, he said, “If I
don’t take it out – you die.  If I do take it out – you have a chance of living……or, you could die from the surgery.”

My notebook had notations of various percentages of the likelihood of what might go wrong or what might go right.  The chance of Jeff dying on the table with this procedure was higher than the likelihood that he would have gotten colon cancer in the first place.  We didn’t have to think long.  We took the second surgeon.  It was a chance.  A chance to live.

Easy Fix

Jeff was back in his hospital room after his surgery.  It was a biggie.  They had removed that “third spot”.  It turned out to be a lymph node that had grown into the portal vein.  There were already collateral veins around the mass since it had been slowly stopping the flow of blood for at least several months.  The surgeon had to graft a section of the portal vein and there had been a “leak” during surgery.  Jeff had required 2 units of blood intra-operatively. That caused a knot in the pit of my stomach.  I knew from reading studies that if blood was required intra-operatively the chance for further metastasis was significantly higher.  But, there were no options.  Try to overlook that blip and deal with what we had.  His pain was high.  His enzymes were still sky-high.

Over the course of the next several days his enzymes and pain improved to the point of hearing the most anticipated words, “You can go home tomorrow.” Yeah!!  Next morning came and I looked at his labs- because – well, because I was obnoxious and always required them to show me his labs.  His enzymes had jumped dramatically over night.  The P.A. came in signing the papers for him to leave and, due to our language barrier- my speaking only English and all, doing charades to explain how we needed to take care of everything.  “But, his enzymes….”  “Oh, don’t worry about those.  They will go up and down.”  “Yes, but they were going DOWN steadily and now they’ve gone UP.  That is not up and down.  That is slowly down, and then suddenly UP.”  “No worries.”

We went home.  There was no follow-up scheduled for a couple of weeks.  Over the course of the week Jeff seemed to get more lethargic.  “I think you need to go in.”  “It was a big surgery.  I just didn’t have the reserves before I went into this one.  I’m just healing.”  “Hmmm… I don’t think so.  I think you’re getting worse.”  Why I didn’t notice he was looking like a carrot, I’m not sure.  But, I knew he didn’t seem to feel well.  Texted the doc and requested that we get his labs drawn.  It was Saturday morning.  I’d gone to church.  The call came- take him to the hospital now.  Doc had gotten the results.  They were bad.  Bad enough that we needed to go back to Omaha.  Left the kids with in-laws and headed on my journey.

After a couple of days of fasting, testing, and prayer, they decided the “main drain” for bile from the liver had scarred shut.  The surgeon came in to explain it.  “Easy fix,” he said.  “We just put a stent across that spot and all is well.”

“Easy fix.”  I’d heard that before.  Never believe it.

Nooooooo!!!!

I stood in the shower letting the hot water wash over me.  My friend had told me a secret.  If you cry in the shower, you don’t feel the sting on your face.  The tears blend in with the water.  I liked the shower.  Sheila and I had stayed the night at the hospital housing.  Jeff was scheduled to have a new bile tube inserted that day and we were  determined to make sure it didn’t go like the first one had.  I took my time in the shower.  He was required to fast from evening the day before, but usually they didn’t work him into the schedule until midafternoon.  Then he couldn’t eat again until the surgery team looked at his results, usually after 5pm.  If they didn’t like what they saw, he’d get to eat a light snack and then start his NPO for the next day.  They were starving him in their efforts to help.

As I made my way out of the shower I heard my phone ringing.  It was Jeff.  “Hi.  They’ve got my test scheduled.”  “When is it?”  “They’re wheeling me out the door right now.” “WHAT!!??!!  NOOOOOO!!!!!”

“Sheila!! WAKE UP!!!!  We’ve got to GO NOW!!!”  We must have been a sight.  My hair was dripping wet.  I believe we both had clothes on and not our pajamas.  I’m not so sure if we had shoes on.  We were no less than 1/4 mile away down a maze of corridors and three elevators to get to where they were taking Jeff.  We ran.  We arrived in the waiting room.  Others were sitting there waiting quietly and patiently for their test.  The receptionist looked up from her work, nonchalant.

Sheila is a superb patient advocate.  I don’t like to rock the boat for personal favors.  She’ll do whatever it takes.  And it really wasn’t a personal favor.  It was a matter of life and death for Jeff.  That tube was the only hope he had at living.  And that tube had caused such excruciating pain going in the first time, he swore he’d never do it again in his life.  Unfortunately it had blocked within 24 hours.  And, more unfortunately, the surgeon had told me- but not Jeff- that he’d have to have it replaced every 6 weeks or so.  I had talked him into trying one more time…hoping and praying it would go better this time so that he’d be willing to do it again in 6 weeks.  This HAD to go smoothly.

Sheila took the lead.  “Where is Jeff?”  “Hmmm… he’s not on our schedule.”  “He HAS to be here SOMEWHERE.  He called and said they were bringing him.”  “Sorry.  I don’t see him on the schedule. Are you sure he was coming here?”  “Listen!  We stayed overnight to talk to the person in charge of his anesthesia before this case.  We are going to talk to them.  Jeff came from the floor.  Not an outpatient.  Where is he?!”  “Oh, let me call and see what I can find.”  (and…. let me sip a little coffee and chat with my friend, and then I’ll check into that for you….)  Nobody caught on to the urgency of what
was about to transpire.  HELP ME, GOD!!

Pretty soon a tech showed up at a side door.  “Are you the ones with Jeff?  Follow me.”

We went through another maze of corridors and up an elevator.  Then he tapped on a door, one of many in the hallway, and we waited.  A middle-aged gal came to the door- and there laid Jeff on the table.  “Hi, Hun.“  He was pleasantly surprised to see us.  We spoke with the gal in the hallway.  She was going to be giving his anesthetic that day.  Sheila is all for pulling doctor strings or whatever other strings are required to get the job done.  “I’m a nurse.  And she’s a doctor.”   Good introduction.  “And we are here to make sure that man does NOT hurt during this procedure.  What are you going to give him?”  Well, it really depended on the doctor.  He might need Jeff to hold his breath or move this way or that during the procedure in order to manipulate the tube as required.  She really wasn’t sure what she could do but she’d try.

“Here’s the deal.”  My lip was trembling and my eyes were brimming by this point.  “This is his last chance.  He’s been through hell.  He has had many surgeries and months of chemo and now his bile tube is blocked.  The procedure two days ago took 11/2 hours to break through his scar tissue.  The first surgeon couldn’t get it done and had to call for back-up.  He bled enough from that procedure to require a unit.  He swore he’d never do it again.  I’ve talked him into this.  But I can assure you, if he feels pain, he will NOT do it again.  And he will die.  You HAVE to do something for him.”

Jeff woke up about 6pm that night.  Now that’s what I call service.  Thank you.

The Time Capsule

”We need to talk.  I could meet you Saturday at the office.”  Text from MDC- Jeff’s doctor.  Yes, we texted.  Sometimes I’m sure he regretted ever giving me his cell phone number.  I tried hard not to abuse it.  But this time he texted me first.  Jeff had had a scan earlier in the week.  This wouldn’t have been the first time the doc had given up his Sabbath activities to meet with us.  But this week was different.

”It’s never good when you ask us to come to the office instead of calling me and giving me the results.”  I texted back.

”No, I suppose not.”

”I don’t want to know right now.  We’re celebrating Jeff’s birthday Saturday.  I’ll call the office and get an appointment for Monday.”

”Sounds like a good idea.  Enjoy the celebration.”

Two days went by.  The suspense was killing me.  It no longer sounded like a good idea.  I knew we were dealing with something, but what?  If I just knew how many spots…..maybe surgery was an option again….

”How many lesions are we dealing with?  Can you just tell me that?”  I texted to MDC.  No response.  Maybe he was busy. Waited.  Waited.  Nothing.  No text ever came.

We had our birthday celebration.  What do you give someone for their last birthday?  How do you celebrate?  I didn’t know.  Estelle knew.  She made a scrapbook for Dad.  A book of memories.  We went to the store and bought anything she thought she might like to use. I have never spent so much money on so few pages in my life.  Worth every penny.  It was a scrapbook about her relationship with her dad. She thought she was making it for him.  I knew she was making it for herself.  And he treasured it.

We went to the doctor Monday.  He came in with no reports in his hands.  He pulled nothing up on the computer.

”How many lesions are there?”

”It’s like you took a pepper shaker and shook it over the liver….  We can try chemo.  It may buy you some time.  We don’t have to be as aggressive as we were before.  We can dose it based on your symptoms.”

”Thank you.”

”Call me when you decide.”

”Thanks.”

Two weeks passed.  His office staff called.  “What have you decided about chemo?”

”No thanks.”

Time.  What is it worth?  Little time spent feeling as well as possible, or more time spent feeling worse?  Time.  We’re trapped in it.  Time. Never enough of it.  Time.  Thank God for eternity!  What will we do with all that time?

Face of Death

He walked out the door and never looked back.  Resolute.  He had wanted the kids to make the trip with him.  They had chosen not to.  I knew his disappointment would be short-lived.  The mental picture they would have had would have lasted their life time- which was certain to be longer than the time he had remaining.  I voted with the kids.  I had packed a bag for him: several changes of clothes, tooth brush, hair brush, shampoo, razor- everything you’d take for a trip.  I carried it out. He walked to the car under his own strength- which was minimal- all bundled up against the cold.  He had no body fat to warm him.  It was less than a mile from our house to the hospice house.  A very short trip.  But yet so long.

“Would you like me to take you to Wyoming?”  I asked as we were headed down the hill.  I was driving.  Jeff hadn’t had the strength or concentration to drive for many months.

“I would like to go to Wyoming again.  But I think I would die getting there.”

Silent pause.  Quiet words, “The result will be the same regardless of which way we go.  I’m willing to take you wherever you would like to go.” Pause- sitting at the light- turn right to the hospice house or left to Wyoming.

“I want to die here.”

“OK”- turn right.

We got him settled in his room.  First room on the SW corner of the building.  He changed into hospital pants and a T-shirt- the only thing he used from the many changes I’d brought for him.   Peggy, his hospice nurse, was there.  Sheila was there.

Sheila. What a gift from God she was to me!  She’d been closer to Jeff than to me during our academy days.  We were friends back then- but we were on different wave lengths.  We’d lost touch over the years but had reconnected October 2007 at our class reunion.  That reconnection came just two months before Jeff’s diagnosis of cancer.  Without that reconnection I would never have thought to call on her.  And she turned out to be my steady hand of support and reminder of the love of God through the path that we had to take.  She was always ready to share a Word of Truth.

Back at the hospice house- The Monarch.  Kids came to visit Friday evening.  They didn’t stay too long.  There weren’t any tubes, monitors or IV’s connected this time like there were most times when Jeff was away from home.  Just lying in bed.  Talking. But what do you talk about?

Company came Saturday.  Jeff’s cousins.  They talked about fun things they did growing up.  Remembering.  I couldn’t stay in the room all the time.  They were laughing.  Laughter is good.  But what about the elephant in the room?  What about the fact that everyone knew this would be the last visit they had together?  Would no one talk about that?  The heavy weight of it all made it hard for me to breathe.  I had to get some air.

Sunday came.  Jeff was very tired.  He had spent more awake time the day before than he had on any given day for months.  “I can sleep when I’m dead.”  he said.  He struggled to stay awake.  The kids were there most of the day.  There were many different rooms we could use at the hospice house.  They didn’t have to stay in Jeff’s room all the time.  They could get out and breathe when they needed to, play with toys, watch TV or sit by the fire.  They went to get flowers in the afternoon and brought them to Jeff’s room to brighten it up.

Monday came.  We really didn’t know how this was all going to go.  We had closed his bile drain tube Friday before he showered in preparation for his trip.  It had taken him all morning and part of the afternoon to have the energy to complete his shower and shave.  The drain had been his life-line.   His bile duct had scarred closed after his last
major surgery in August 2009.  An external drain had been inserted.  We’d been changing dressings and emptying it at least twice daily ever since.  We’d tried to close it in the past, hoping it would drain the right way.  But it never worked.  His bilirubin would climb and a new drain would have to be inserted and the process started all over again.  The bile had changed from thick, dark and oily to thin, brownish and with flecks of tan tissue.  The interventional radiologist had told us in January those flecks we saw were pieces of his liver- destroyed by the cancer and coming out a little at a time.  Jeff
had been able to eat nothing but cream soups for a couple of weeks.  He got a cup or so down on a good day.  He looked and felt like he was starving to death.  His legs hurt.  He was filling with fluid. Now it was moving to his abdomen.  He could have taken diuretics. But that would have meant he would have been going to the bathroom a lot.
He had no energy for that.  So a catheter would have been required. Why?  Why do that?

We had talked it over the Wednesday night before.  He was so miserable.  I reminded him we could close the drain if we wanted to. “What would happen then?”- he wanted to know.  “Your bilirubin would rise, you would become toxic and go into a coma.”  “How long would that take?”  “Probably a few days.”  “Would that be playing God?” “Were we playing God when we inserted it?”  Tough questions.  Tough decisions.  No right answers.  Cancer was consuming his body. A bile drain was not going to save him- but might prolong the process.  The bile drain had also removed the bile which is necessary to process nutrition from food.  A blessing and a curse.  He had chosen to close the drain.  It was no longer needed.  And God is SO good!  We had tried and failed to close his tube so many times before.  This time was different.  The bile didn’t back up.  It went the right direction.  God let us know He was in charge.  Not us.  He took that burden from us.  But now what was going to happen?  We didn’t know.

Our daughter stayed at the hospice house Monday.  Our son went to school.  Sheila was by my side- always.  Our son and his cousins came by after school Monday.  After a while it was time for them to go. They all lined up to give Jeff hugs and kisses.  Our son was last in line.  He didn’t want to kiss Daddy- he was scruffy.  Jeff was always very particular about his clean shave.  Jack didn’t want to kiss that scruffy face.  I insisted- ”You kiss your Daddy- on his forehead then.  It’s not scruffy there.”  So he did.  Jeff promised him, “The next time you see me, Buddy, I’ll be shaved up, OK?”  “OK. Bye Dad.  Hope you feel better.”  Jack always added that on.  “Hope you feel better.”  I’d been hearing it nearly every day for more than two years from my little boy.  “Hope you feel better, Daddy….”

I thought Jack had understood.  We’d been very honest with the kids regarding what we knew to be true.  We tried very hard not to weigh them down with what we feared to be true- but stuck to the facts with them.  We didn’t hide truth- knowing that would only make it harder when truth showed up.  But Jack hadn’t understood.  When I told the kids Jeff was going to the hospice house, Jack wanted to know if Jeff would be at his birthday party.  His birthday is in April.  This was March.  I told him I didn’t think so.  “WHAT?  You mean they are never going to let him out of there??”  “That’s not it, Honey.  Daddy is going to die.  He won’t be at your birthday party because he will be dead.  He won’t be here.”

Back to Monday- the kids left.  Jeff decided he should get up, shower and shave.  I protested.  The shower was in a large bathroom.  There was no heater in there.  It would be too exhausting.  How about he use the tub room?  It was in a small room that could be heated to a toasty warmth.  There was a hand held shower attachment he could use to wash his hair.  It was arranged so other people could assist without getting soaked themselves.  He finally agreed to that.  I let the nurses know to get things warming- he was going to clean up.  The hospice nurse, Peggy from Asera Care, stopped in the room on her way out.  “See you tomorrow.”

Not ten minutes had gone by when Jeff started shaking uncontrollably. “Get me some blankets- I’m cold.”  Piled the blankets on.  “I’m too hot.  Take some blankets off.”  Took some off.   Still shaking- now worse. And he was getting very hot.  I texted Peggy.  “Come back- going bad”.  She called.  “Have the nurses give him his Dilaudid and Ativan.”   Ten more minutes passed.  Worsening.  Now his whole body was tightening up, his jaw was clenched.  He pleaded through his teeth “Can’t they give me something else?”  He’d had a couple seizures before.  They’d lasted no more than a minute. After the first one he said, “I never want to have another one of those in my life!”  This one was not letting up despite the usual medication and even more medication.  Twenty minutes had passed of pure torture for both of us.  Peggy arrived.  “The only thing we can do is sedate him.” “Do it!”  We’d talked about this beforehand.  One of the blessings of hospice care.  They make you think through the ugly facts ahead of time.  “Do it!”  They dripped the medicine between his teeth. It was not instant relief.  Peggy asked me to go in the hall with her.  “Your eyes are showing fear.” she said.  “Get yourself together and show faith or you will have to leave the room.  You are not helping him.”  I was stunned. I aimlessly wandered to the fireplace room.  And sobbed.  Peggy came in a few minutes later.  “He’s resting now.”  “Can I go see him?”  “Yes.”  “I’ve had my last conversation with him, haven’t I?”  “Yes.”  “OK.”

I went to his room.  He was breathing loudly, exerting all the muscles he had in his upper body.  His eyes were shut.  I took his hand.  Sobbing.  Stroked his scruffy face.  “Just go to sleep, Honey.  It’s OK.  You are going to see Jesus’ face.  You are going to eat from the Tree of Life.  And it’s going to taste GOOD! Let it go.  Rest now.”  I heard a raspy whisper.  “What are they saying?”  I was shocked!  “What?!”  It was Jeff, eyes open, talking to me.  “What are they saying?” he repeated.  Translation- “Give me a run-down of my medical status.”  I could not believe it.  He was supposed to be in a medicated coma and he was talking to me.  Deep sigh, pull myself together, focus, present the truth.  “Well, your heart rate is up, your blood pressure is down, you have fluid in your lungs and your fever is high. They don’t expect you have long.”  “OK.”  And he pursed his dehydrated, cracked lips to give me a kiss.  And he closed his eyes. And kept struggling to breathe.

We had talked a few days before.  Was there anyone else he needed to talk to?  Anyone he needed to resolve anything with?  Were his conversations finished?  They were.  “What about your mom?  Have you said good-bye to your mom?”  “No.  We can’t talk about it.”

Now Jeff could do nothing about it.  He was powerless.  “Ruth,” I said.  “Go talk to Jeff.  He doesn’t feel like he’s finished his conversations with you.  Please go tell him it is OK for him to die. He needs to hear it from you.”  She went to his room.  Just she and her dying son.  I can’t pretend to imagine what that was like for her.  She came back out about an hour later.  “Did you tell him?”  “No…  I couldn’t.  I THOUGHT it.”  “He needs to HEAR it.  He can’t hear your thoughts.”

The night wore on.  Such effort to breathe.  Brenda, Wes and I were in the room now.   “Wes,” I said.  “Have you told Jeff it’s OK for him to die?”  “No- but I can if it’s important.”  “I think it is.”  “OK”  Wes walked to Jeff’s side and took his hand.  Saying that you can say such a thing and actually doing it are two different matters.  Wes fell apart- sobbing.  “Brother, I just want you to know, it’s OK…”  Jeff- who had appeared to be comatosed for hours now- opened his eyes to meet his brother’s gaze and held out his hand to shake his brother’s hand.  We gasped.  He closed his eyes and continued his labored breathing.

Second shift was over.  Third shift was arriving.  The nurses came in to say good-bye.  “Jeff has been such a good man.  We’ve never had a kinder patient.  What a blessing he has been to us.”  One nurse touched his leg.  And he opened his eyes.  And held out his hand for a handshake.  Then closed his eyes and continued his labored breathing.

We sat in his room.  Sometimes talking.  Sometimes just being. Listening.  Waiting.  He opened his eyes one more time- to wink at his sister.  His dad talked about how much Jeff loved Wyoming.  And Jeff groaned.  I thought it to be coincidence until it happened again, and again.  He did love Wyoming.  But, through the course of cancer, he had grown to love God even more.  Therein was the blessing of cancer.  It had its curses.  But that had been its blessing. Jeff loved God with all his heart.  He was willing to give up every earthly dream and go tell others of the love of God if He had chosen to heal
him.  But He didn’t heal his body.  He healed his soul.  Jeff’s willingness to obey was perfected.  God had completed His work in him as He promised to do.

Morning light came.  The hospice aid came.  Was there anything she could do?  I wanted to shave him.  I knew Jeff would want that.  I went to his room with the aid.  Got out the razor and stood by Jeff. His jaw lifting and dropping with every breath.  Neck muscles tightening and relaxing.  Chest heaving.  He had oxygen on now- in hopes he wouldn’t struggle so hard for every breath.  I wanted to shave him. But I couldn’t.  I just couldn’t.  I laid by him instead.  But, the position he was in seemed to make him struggle more for his breath.  I got up and we tried to adjust his position.  Didn’t help much.  But I didn’t lay down again.  And I didn’t shave him.  I couldn’t. The aid left.

Many people were there now.  Pastor Carlson- reminding us of the promises of God.  Lisette- helping plan the service.  Sheila- always Sheila.

Afternoon came.  Really no change in status.  How long would this go on? Ruth went in the room, again alone with her dying son.  This time she stroked his face and told him it was ok.  And he quit struggling and rested.  We all came to the room.  I stomped my foot and yelled at Death aloud “Oh Death, WHERE is your victory??!!!”  I was angry at Death.  “You think you won?”  I thought.  “You just wait till you meet my GOD!  He’s bigger than YOU!”

Saturday night we had a memorial service of sorts for the kids.  There were a lot of kids.  We had our camping tent set up in one of the rooms at the church. A fire in the fireplace.  Camp stools.  Marshmallows, chocolate and graham crackers.  A table with pictures and outdoor gear.  His sunglasses.  A cap.  Binoculars.  Pastor Carlson was there to give a talk to the kids.  What is death?  What is our hope?  We had a video of pictures set to “I Will Rise” by Chris Tomlin.  He will rise.  This is not the end of his story.  It’s just a pause. The next part of his story will be much better than the first.

Monday was the funeral.  But, it was a resurrection.  A resurrection for those in attendance.  A chance for them to be born again.

Some days I find it hard to ask “Oh Death, where is your sting?”  Hard because, some days, I feel the sting.  But I believe.  I believe the things we see are temporary.  What God has waiting is eternal.  He will erase the face of death forever and make all things new.  I believe.  And that makes all the difference.

Click here to be taken to a link with Jeff’s funeral. The service was a blessing to so many people. May it continue to bless.

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5 Comments

  1. Carol L.

     /  January 12, 2012

    You have written to the glory of God. He is faithful to restore and reconcile his children.

    Reply
  2. I’ve cried my eyes out this afternoon, imagining the pain you and your family have suffered. But I’ve also rejoiced in the great work that God has done – in strengthening Jeff’s faith (and yours!) & taking him Home. Thank you so much for sharing your story.

    Reply
  3. My glasses are speckled with dried tears… your story was powerful, amazing. I am so sorry for your loss. Praise God that this life is not the end. Your story puts life and it’s distractions in perspective. The only things that really matter are God and people. It’s so easy to forget that and spend (waste?) our time here on frivolous pursuits–I am as guilty as the next person. thank you for sharing your story.

    Reply
    • I have to re-read it myself at times to get a better perspective on my present. The experience has changed me forever, but the intensity of feelings diminish with time – thankfully. God is a great healer, and He continues to work in my life – thankfully.

      Reply

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