Mike’s Story #5 – The Final Chapter

That’s a bit of a misnomer, because indeed, there is nothing final about Mike’s story.  “For this is the way God loved the world: He gave His One and Only Son, so that everyone who believes in Him will not perish, but have eternal life.” (John 3:16 NLT)  Because Mike knew this verse to be truth, because I know this verse to be truth, Mike’s last months on earth are not his final chapter.  This gives me great joy and peace.

There is an emptiness because I can’t touch him, hold him, talk to him, ask his advice, laugh at his stories or enjoy his company.  But knowing he is in heaven at the feet of our Savior does fill that emptiness with peace and with hope for the future.  I can smile as I remember all the attributes that I loved about Mike.  This truth also allows me to laugh over his antics, stories he told, “Mike-isms” that the kids and I quote to each other.  Remembering him is not painful, remembering him is a blessing of joys re-lived.

But this is the story of cancer.  The story of a disease that robbed us way too soon – but one that he conquered in many ways over many years.

So, to re-cap.  July, 2019.  After 11 years of leukemia, 8 years of constant chemo in one fashion or another, 3 years of monthly IVig infusions, Mike was pronounced in complete remission.  The summer before, he was told the cancer was so invasive and aggressive that he’d never reach remission again and was given a bleak outlook for his future.  And now, that same beautiful doctor said “I’ve looked everywhere and I cannot find your cancer anywhere!”

We were ecstatic!  There was a big “but” following that statement…..BUT….Mike was still having much difficulty breathing.  He was on supplemental oxygen and it was evident that he couldn’t breathe well without it but no one really knew why.   We agreed whole-heartedly that it was time to get all of Mike’s specialty doctors under one roof.  Being part of a teaching hospital like KU was a real bonus for someone like Mike who had multiple issues and multiple organs affected by years of chemo.  Having men and women who would readily look “outside the box” at his symptoms sounded like a good plan.  We were ready to enjoy remission, so we wanted answers about this breathing stuff!  

Our next appointment was with a pulmonologist, Dr. Schmid.  Dr. Schmid was a really kind man and quite interesting.  He had not been in the US very long, and while his English was good, he was often confused by Mike’s humor and puns – I had a lot of explaining to do in those first meetings!  He learned a lot of colloquialisms from Mike and would often repeat one of Mike’s jokes at subsequent appointments.  He set up several tests for Mike for lung function, oxygenation, capacity, etc.  What he found was rather surprising.  Mike’s lungs were functioning fine.  His capacity was fine.  His overall oxygenation was fine….but there was just one number that was off (and I do not remember the name of it, nor can I find it in any of my notes) – which pushed Dr. Schmid to contact a cardiologist and get Mike scheduled for a transesophageal echo (TEE) and heart catheter. 

Both of these tests are out-patient.  Dr. Schmid, however, was insistent that Mike be admitted to KU for these tests as an in-patient.  Monday, August 12, Mike was admitted to KU for tests.  There was a lot of confusion, a lot of delays, lots of “hurry up and wait.”  We met a cardiologist, Dr Gollub who could not understand why Mike had been admitted as an in-patient for out-patient testing, nor why the cardiology tests were ordered by a pulmonary specialist!  Labs were drawn and tests were scheduled for the following day. 

Tuesday morning a plan for the day was mapped out.  It wasn’t long before new doctors were arriving in Mike’s room.  A pulmonary hypertension specialist was called in, interventional cardiologist and anesthesiologist.  All three agreed that Mike’s lung condition made sedating him too risky.  As labs were reviewed, it became more and more clear why Dr. Schmid wanted Mike admitted for these “out-patient” tests.  The TEE was off the table as it required full sedation.  Unfortunately, when the TEE was cancelled, someone cancelled all the tests – but this wasn’t clear until late in the day.  So, another night in the hospital. 

On Wednesday, Dr. Gollub came in and talked at length about Mike’s condition and the labs they were seeing.  The official diagnosis wasn’t a shock to me because I had been researching and reading his labwork for years.  He was in congestive heart failure.  We already knew that Mike was in Stage 3 kidney disease from the years of chemo.  We knew that his liver enzymes were wonky (that might not be the medical term for it…) although they would fluctuate so there was never a diagnosis of liver disease.  Dr. Gollub had hand-picked the Interventional Cardiologist that he wanted to do Mike’s heart catheter.  He said Dr. Tadros did not have any openings in his schedule until 4 in the afternoon, but that he was worth waiting for.  By this point, we had come to trust and appreciate Dr. Gollub and his demeanor, the way he related with and to the entourage of students and interns who accompanied him on his rounds. 

We waited.  And waited.  And waited some more.  Mike had not had anything to eat or drink since midnight.  He was getting tired.  He was beyond hungry.  A little after 6, they finally came to his room to take him to the heart lab where we waited some more.  We met Dr. Tadros and liked him immediately. 

The catheterization went without a hitch.  Dr. Tadros was with Mike when they brought him back to the room where I’d been waiting.  Mike’s mom, her friend, Mike’s sister & brother-in-law were also in the room.  Dr. Tadros explained that Mike’s mitral valve was failing.  The valve was too far gone to repair with a “clip” which is a less invasive and does not require full sedation.  His mitral valve had no “leaflets” left to attach the clip to. He needed a mitral valve transplant, but that was not a viable option with his current health condition.  A part of the heart catheter procedure was to measure the blood pressure in both sides of the heart as well as in the lungs.  Until that point, I didn’t realize that your lungs have their own “blood pressure” although it does make sense if you think about how they work in tandem with the heart.  Dr. Tadros told us that the pressure in Mike’s lungs was 100 – normal would be under 20.  The diagnostic term is “pulmonary hypertension.”  And now we had a reason for Mike’s shortness of breath. 

So…how did this happen?  Backing up to Blog #3, October of 2013.…infected port….10 days in ICU, 10 days in hospital, 30 days of IV antibiotics, endocarditis.  Since that time, he had regular cardiology check-ups every 6 months with ECG to monitor the mitral valve.  In January of 2019, his cardiologist determined that there had been no change in the condition of that mitral valve in 5 years and put him on an annual cardiology follow-up. 

Did the mitral valve start failing in April before he contracted pneumonia and was in the hospital and subsequently put on supplemental oxygen?  Or while in the hospital on antibiotics, with his heart working harder to compensate for the pneumonia?  We’ll never know – but what we do know is that after 5 years, at some point, the mitral valve did begin deteriorating.  And in August of 2019, the best and the brightest that KU has to offer determined that Mike was not a candidate for mitral valve replacement.  Dr. Travis Abicht, Thoracic & Transplant Surgeon, came to Mike’s hospital room and spent hours talking with us.  He asked Mike what he wanted out of life.  How he wanted to live.  What is a good life.  He laughed with us.  He teared up when we did.  We have met some amazing doctors over the years but I truly think that Dr. Abicht was one the most compassionate.    

He told Mike that he could save him.  He could replace his mitral valve.  He could get Mike through the surgery.  And many would call that success.  However, he said that he could not give Mike the life he wanted.  It was highly likely that Mike would be on a ventilator the rest of his life.  And given his age, and the strength of his heart apart from the bad mitral valve, that could be 5-10 years, unless the leukemia came back.  In a nursing home.  On a ventilator.  And, with his kidney disease, quite possibly he would also be on dialysis.   Dr. Abicht said that would not be “success” in his eyes, especially after talking with Mike and knowing that Mike wanted to go to Kade’s football games.  He wanted to watch Bodee play baseball.  He wanted to work on his old truck and go to estate sales. He wanted to celebrate birthdays, anniversaries and Christmas.  He did not want to be hooked up to machines.   One-by-one, the specialties came in to Mike’s room that day and said the same things.  Dr. Abicht did not want to do the surgery, but would if Mike asked him to.  Dr. Gollub, Dr. Satterwhite, Dr. Gupta and the anesthesiologist all said they would NOT do the surgery, even if Mike did ask them to – based on his condition and the likelihood that he would never come off of a ventilator.  Interns came in to visit with us.  The hospital chaplin.  A psychologist.  A counselor.  Mike chose to live the best life he could with the life he had left.  He chose quality over quantity, and I agreed.  I’d have kept caring for him in any shape, but I also knew deep down that even if he couldn’t communicate it, he’d hate living in a bed, unable to move on his own, unable to breathe on his own – laying there, day after day, night after night, trapped with his own thoughts in his own head.  I could not do that to him.  They were sending Mike home, with no chance to recover, but were trying to come up with a plan to give him the best life possible with the time he had left.  Ironically, with all the damage, his body was strong. His spirit was strong. His heart was strong. It just had a bad mitral valve.  His lungs were scarred and were not getting enough oxygen-filled blood to be able to do their work.  His kidneys were also not getting the fuel they needed. 

We were sent home.  Not to die.  To live.  To make the most of the 2 weeks, 2 months, year that Mike had left.  To go to those football games.  To fix the brakes on his truck.  To go to every estate sale he could.  To spend time with family.  To enjoy holidays, kiss grandbabies, to laugh, to love.

And again, we had hard conversations with family and a few select friends.  Timing was so vague – no one had any idea how long his body or his heart could handle the stress it was under.  Dr Abicht made a phone call to a friend and colleague, Dr. Haglund and asked if he would take Mike’s case and monitor the heart failure.  Dr. Haglund and his nurse, Katherine, were great people.  Dr. Haglund felt that the best course of action for Mike, and the way to help his breathing and to keep his heart from being more overworked than it was with that leaky valve was to keep him “dry” which involved a combination of low-sodium diet, diuretics and steroids.  The combo was tweaked a bit the first few weeks but they found a good regimen for him.  

We continued to do our normal, everyday things.  Looking back on that time frame, I don’t recall things being much different and yet, as I go back to journal entries, I find that he really did start failing fairly quickly.  He was always so upbeat and persistent in his desire to live, that it’s only in hindsight that I see how he was failing leading up to February 10, 2020. 

I turn now to my journal entries:

9/3/2019. This morning, Mike’s blood tests were uploaded to his my-chart and it’s now showing liver damage.  The liver was the last organ to not show any damage – and while this doesn’t mean a lot in the present time – it does just indicate that his body is continuing to fight – and to fail.  The liver enzymes weren’t “off the chart” or anything – but a rise does indicate liver damage.  The kidney disease is still registering at stage 3, so not any worse.  I can’t tell him about this – no reason for him to know until the doctors talk to him.  And there really isn’t any one I can discuss this with. 

10/19/2019. Mike is hanging in there.  We’ve had dr appts and are whittling down some of the drs and meds.  I’ve spoken privately with the cardiologist and with Trish, (Dr. Elia’s nurse) both who reached out to me.  They wanted to review the plan moving forward.  All are so impressed with Mike’s attitude and his “moving on” spirit which serves him so well right now.  Trish said that at this point, they wouldn’t restart chemo if the leukemia returns because he is too weak.  If it gets really bad, really quick, they might do more immunotherapy.  The cardiologist told me the same thing he told Mike…that at this point, especially moving into winter, Mike needs to stay active (within reason! No digging holes or changing tires!) or he will deteriorate quickly.  He said that after talking with his pulmonary team, none of them can understand how he is just perking along!  I know how.  We are under God’s grace right now.  Every moment is a blessing.  He is certainly getting weaker.  I see the weakness, but he seems “fine” – a bit thinner, not as much energy.  We said our goodbyes to Dr. Yacoub and Dr. Satterwhite.  Neither can help him now.  My main contact moving forward is cardiology.  The regular pulmonary dr will follow for the oxygen use and we see Dr Elia for the IVig infusions every 4 weeks. Surreal. 

11/20/2019. Mike had some sort of heart issue Saturday night.  It was frightening.  He didn’t want to go to the ER so I was monitoring his oxygen levels, pulse and blood pressure and after the first 30 minutes or so, he leveled out.  He wasn’t in his normal range, but he was in an acceptable range to stay home and not need the ER.  I prayed over him.  I asked for wisdom.  I asked for knowledge.  I asked for more time.  I soothed him, rubbing his back and willing his breathing to slow.  He was able to relax and fall asleep.  But it was a difficult night and he’s still not back to his “pre-Saturday normal” – but getting stronger.  I spent about 25 minutes on the phone yesterday with his dr’s office, after sending them an e-mail with probably way more info than they needed (I had included his daily activity, what he ate for dinner, how he was the morning after, etc) but they said that was all very helpful for them.  They aren’t positive it was heart – could have been lungs – but it resolved fairly quickly so heart seems to be the most likely culprit.  Sunday morning he told me that he had thought he was dying and that he had come very close to asking me to call the kids to come and sit with him.  He cried – so scared.  That gave us an opportunity to talk about what he wants for his end of life, and what is feasible – I’m ok with keeping him at home, as long as I know the parameters – I don’t want to find out that a simple procedure or medicine change could have given him an extra 2 weeks or something….so I had a lot of questions for the dr.  We have agreed to a meeting with palliative care to discuss what he wants and doesn’t want.  They’ll go through different scenarios with us and make a written plan for the drs to follow.  Right now, he says he doesn’t want to be on machines – he doesn’t want a ventilator – he doesn’t want a feeding tube.  I don’t know that he’s ready to say “do not resuscitate” but we need to discuss about when he will be at that point.  He is unsure about decisions right now.  I feel like he looks to me for strength and calm so I have to get my emotions under control.  He hasn’t told his kids about Saturday night yet, and isn’t ready yet to tell them about the palliative care appointment. 

11/25/2019. Sunday, Mike had another spell while I was at church.  He was able to text to me one word “chills” and then didn’t respond to me. I left class and went to pick Dominic up from his.  I called Dawn to meet me at the house to get Little Bit.  But, by the time I got home, Mike was better.  This time, he didn’t panic, after having gone through it last weekend, and he was able to keep calm and slow his breathing the way I’d shown him (in through the nose and out through the mouth.  It’s difficult for him – because he wants to gulp the air that isn’t there.)  His breathing was normal (for him) and he was starting to warm up.  It wasn’t as bad as the one last week, but I am certainly keeping a closer eye on him for a while.  We still don’t know what is causing it.  

We met with palliative care on Friday.  The meeting wasn’t as informative as I had hoped.  Basically all we talked about was his living will and they spelled out some definite things Mike wants – but they didn’t offer any help or suggestions for what we are dealing with right now which is what I thought we would talk about.  The NP we met with just put down Mike’s desires for end of life and then had him sign it and had it notarized.  He said he doesn’t want to be on a ventilator more than 5 days – (don’t know why 5 days – that’s what Mike said so they wrote it down) – he doesn’t want to be kept alive in a vegetative state, except for the time it takes for Abi to come from Florida and he wants to be at home if at all possible.  He wants to be able to recognize friends and family and be responsive to his surroundings and beyond that, he does not want to be resuscitated.  It was a strange meeting.  Unsettling.  Too businesslike.  I thought they were going to give us suggestions on how to take care of him now – but it was all about how he wants to die. 

They did spend a bit of time explaining to Mike that as long as he is continuing to get the IVig infusions that he is not eligible to go on hospice care.  As long as IVig is helping him, we will continue having the infusions – and I don’t know if he is ready for hospice care anyway?  I don’t know – it’s strange.  He said today that he thinks he only has a couple of months – but he can’t tell me why he thinks that.  But, today, he did get out to drive around in his truck by himself.  So that was good! 

12/7/2019. We stuck pretty close to home for the weekend because he was tired.  Monday I took him to the pulmonary doctor and the cardiologist.  He has a sinus infection and is now on antibiotics.  They tweaked some of his other meds. We still don’t know what these “spells” are – and now they wonder if it is a seizure – neurological rather than heart related.  He had another one the day after Thanksgiving and since it was the 3^rd and I wasn’t as frightened, I timed everything to tell the dr exactly how long each phase lasted.  They say it sounds more like a seizure, except that he does talk to me during it.  I only get one word answers, but he can communicate.  He seems to be doing better this week.  He doesn’t have a ton of energy – but he looks better.  Last week, I was getting a bit worried. I don’t know if it is the antibiotic that has perked him up or the idea that Abi and family will be here.  When I told him they were coming he said “Well, I have to live until the 22nd!”  He doesn’t eat much and continues to lose weight, but he seems like he could stay this way for quite a while.  I hope so! 

12/26/2019. Mike enjoyed what is sure to be his last holiday.  We worked hard to make it special and tried to get all the family there at once. Isaac is in prison. Mike knows he will never see him again. We did get to see all the others. Sunday night Mike wanted to talk about how he feels knowing his days are numbered.  Hard conversations, but also good for him to be able to express himself.  He knows he’s going to heaven.  He isn’t afraid of dying, but he doesn’t want to leave me.  He wants to live through June so we can celebrate 15 years.  I told him that if he didn’t, that I would celebrate 15 years of being Mrs. Michael Butler on my own.  He is my forever. 

We talked about how we don’t have a lot of friends anymore – and how some of his family doesn’t seem to get that he could use their support right now.  They keep asking if he is getting better – they don’t get that he won’t!  He’s not going to get better.  This is it.  We’re trying not to be morbid, but this is our reality.  I suppose it’s human nature to want to bury your head in the sand.  Rachael & Brian are so good about helping out and being present.  Having Abi & Pat here was fantastic and it meant a lot to him that Pat helped him take care of a few things around the house to take some pressure off of me.  He’s so worried about me – and I’m so worried about him.  I guess that’s love.  He’s my number one and I’m his.  

12/31/2019. Over the weekend, Mike had one of those “spells” with the chills, couldn’t catch his breath, raising heart rate.  This one lasted longer than some of the others and he did get a slight temperature this time.  With the long holiday weekend, Dr. Haglund had left me the phone number of a nurse to call if there was a problem.  I called and left her a message on Saturday.  Sunday, she called me back.  She wanted me to take him to the ER.  I said that he seems to have recovered well.  She said she really thought he needed to be seen. 

Me: “Well, I’ll tell him, but right now he and my dad are out in the drive working on his brake lights.  He’s under the truck and will have to get cleaned up.” 

Nurse: “Wait…uh, what did you say?” 

Me:  “Yeah, they’re fixing the lights on his truck….” 

Nurse:  “Oh – like actually working on the truck? So he’s really ok?” 

Me: “Yeah, he seems fine now.”

She said that she had read in his chart that he was amazing – and she said she believed it!  No ER visit that day, after-all.

That’s my last journal entry about Mike’s health.  On January 23, 2020, Mike woke me and couldn’t catch his breath.  This time was different.  I knew right away that it was different.  Even as I went to warm up the truck, I was quite unsettled.  Because he was struggling so to breathe, we could not make it to KU and he went by ambulance to Centerpoint.  He passed away February 10 when all of the doctors were telling me he was improving and was going to come home.  Earlier that day, they propped him up on the side of the bed for the first time and he balanced himself.  When he did, he winked at me, managed to give me a weak thumbs up and blew me a kiss (which toppled him over!)  At 10:18 pm, his forever began.

I left the hospital in the early morning hours to go home to an empty house – except for our dog.  Every day that he was in the hospital, when I came home, she would be at the back door and would stay there, whining and dancing around at the door looking for him to get out of the truck.  She’d look at me, smell my clothes, look back at the truck wagging her tail and I’d say, “No, he’s not out there.”  But not this time.  When I opened the door, she didn’t even get out of the chair.  I called to her and she came – slowly, with her head and tail down.  She never looked at the truck, only sniffed my leg in passing, went straight to the yard to do her business.  I don’t know how she knew it was over.  Exhausted, I slept surprisingly well.  I still do.  I consider that a blessing.

And now, you know Mike’s story.  Leukemia took him even though the official cause was “sepsis.”  It was the weakened immune system, it was years of chemo, it was scarred lungs and a damaged heart.  I share our story because even as it ended, it is still a story of hope.  There are so many progresses in cancer research – just in the 12 years that Mike fought it – we saw huge improvements in treatments, chemo, and protocols.  Cancer research is ongoing and we benefited greatly from it.

Mike knew how to live with cancer.  I hope his story gives you hope – perhaps gives insight into what your recently diagnosed friend or brother or mother might be feeling and thinking.  Perhaps gives you an idea of what to expect in your own journey and that your “crazy” thoughts aren’t so far from normal after all.  I hope you understand that while I credit Mike’s determination and drive and desire to live, he and I both knew that was only part of the equation of his longevity.  It was God’s plan for him to live with cancer for nearly 12 years.  He met and touched many lives at the cancer center and in the hospitals in those 12 years. My hope is that his story will continue to fulfill part of God’s plan…perhaps in your heart.  To know that without our Lord in the driver’s seat, life could be very empty.  Mike didn’t fear dying because he knew Jesus.  He didn’t want to die, because he knew his family here on earth and didn’t want to leave us.  He wasn’t a perfect guy, but he was one of the really good ones.  I miss him every day. 

^“So we are always confident, even though we know that as long as we live in these bodies we are not at home with the Lord. For we live by believing and not by seeing. Yes, we are fully confident, and we would rather be away from these earthly bodies, for then we will be at home with the Lord.” (2 Corinthians 5:6-8 NLT)