Mike’s Story #3 – Life Unfolded

Remission – a treasured word for any cancer patient.

We had 2 ½ years of remission before leukemia reared its ugly head again.  During that time, we started growing our art business.  It was such a blessing to work together. 

We created art objects – mostly using stained glass with automotive parts – but we also made furniture, lamps and other accessories out of auto parts, trim pieces, fenders – whatever we could find.  We got creative with solar lights and making outdoor furniture.  We would spend my days off scouring junk yards, flea markets, estate sales for parts.  We spent most weekends selling at the Kansas City city market or street fairs.  We met some awesome people and had a following of sorts – we did the same shows year after year and had clients who would look for us.  We shipped our work to Germany, England, and all over the United States.  As I made glass panels, he made frames for the panels.  As I came up with ideas for lamps, benches, tables, he brought my ideas to life.  We both had creative minds and it was most fun to bounce ideas off each other so that in the end neither of us remembered who thought of it first – and it didn’t matter!

Now and then, that darn stroke would remind us of what used to be – of building houses, training horses, working cattle…and then we’d spend a day together searching a junk yard for just the right piece of auto trim, and we’d laugh together and plan together and get excited about what we COULD do – and life just kept getting better!

Remission lasted until 2012.  Leukemia came back slowly, but by September, Mike was facing another port placement and chemo.  This time, the 6 month regimen was bendamustine with his nemesis, rituxan.  He again had reactions to rituxan, but not as severe as in 2008.   This chemo was more difficult on his body, but he seemed to sail through it and the leukemia was being somewhat controlled.  We didn’t hit “remission” this time – but control was good.

That summer and fall, I had been slowing down a lot.  I felt tired, achy, my hands and feet seemed to always be swollen.  I had carpel tunnel surgery on my left hand, and when I went back to the surgeon she noticed that I still had a lot of swelling in both hands.  After asking a lot of questions, she sent me to a rheumatologist who diagnosed me with rheumatoid arthritis.  He started me on steroids which helped the swelling almost immediately and methotrexate which made a difference in my day-to-day.  I didn’t want to have to take medication for this – but it seemed the best option and I really needed to focus on Mike’s chemo, not my achy joints!

Mike was really pretty healthy – my mom always said he was the healthiest looking sick man she’d ever seen!  She knew how sick he truly was, but his attitude was always upbeat, and he never let anything slow him down.  He truly lived with cancer.  

It was after the bendamustine treatment that KU began talking about bone marrow transplant, also known as stem cell transplant.  When Mike was first diagnosed, we asked about transplant and were told that for CLL, that was not an option.  However, in the years after his diagnosis, there had been some limited success with BMT for CLL patients.  Each round of chemo lessened the odds of cure.  Mike had already had two.  BMT was best suited for complete remission – and we weren’t there.  But, the doctors felt that we were close enough.

We met with the transplant team and came away feeling less than comfortable with the process.  Mike was a gambler – he liked to play odds and gamble on his own abilities.  But these odds weren’t looking good to either of us.  Basically he had a 33 1/3% chance of either a) not surviving the process  b) coming away with another stroke, heart disease or another cancer or c) complete cure.   Those were “normal” odds.  He had already had a stroke, so that raised “b” – he had already been through 2 different chemo regimens – raised “a” and “b.”  They told us that without transplant, he had a 3-4 year life expectancy.  (We’d already passed the first 3-4 year expectancy he’d been given)  We did a lot of thinking and praying and just were not comfortable with the process.  We met again with Dr Elia and she suggested we go talk to another transplant team.  The closest was in Omaha.  The doctor who runs the Omaha transplant unit, Dr Voss, is an expert in CLL. 

It was a clear spring day in April of 2013, when we left at 3am to make it to our 7:00 appointment time.  Dr Voss agreed to start her day early in order to meet with us.  Their facility was impressive.  Their program was impeccable.  But Dr. Voss agreed that the KU percentages were accurate. She suggested that rather than look at transplant with Mike’s history (even though his sister is a 9 out of 10 match) that we wait for a new oral chemo drug which was coming on the market within a few months.  She said that it had better reports for someone who has been through the two main chemo regimens.

We came home and processed the info like we always did – I researched and talked to his doctors and prayed.  We created artwork – some of our most creative pieces seemed to come out of times when we were processing and contemplating some really big decisions!

We were still watching blood counts very closely, and were just waiting to decide when to start the next treatment and what that treatment might be.  Mike was getting anxious to get the port removed.  He did not like having the port – although during treatment it mad infusions much easier.  After treatment, his doctor would typically leave it in for six months to make sure they weren’t going to use it again.  We were coming up on that six month timeframe and Mike wanted it out.  She said maybe in November.

October 12, 2013 we were at the Maple Leaf Festival in Baldwin City, KS.  One of our favorite shows, but the weather that day was cold and rainy.  Sales were steady in spite of the weather.   We had purchased a butane heater for our tent but we were both still very cold all day.  By the end of the day, Mike said he felt fine, but I felt a nasty cold coming on with stuffy nose and sore throat.  We opted to leave our inventory there for the next day rather than to pack up, bring home and have to set up again on Sunday for this 2 day event.   I took a hot steamy shower when we got home and started feeling better.  Mike still said he was fine.  About 5am, he woke me with his shivering.  I touched him and he was burning up.  I checked his temperature and it was 101.5.  For a chemo patient, that’s automatic ER.  He wasn’t actively in chemo at that time, so I put in a call to the doctors.  I could tell he was not well and we would not be going to the show that day.  I talked to the doctor, gave him Tylenol, called my dad and he went with me to Baldwin City to get our tent, pack our inventory and get out of the street before the fair opened at 8am.  By the time I got back home, Mike’s fever wasn’t better so I took him to the ER.  They put him on antibiotics and steroids and sent him home.  The next day, I just felt like he was not getting any better, although he did not have a fever.

On Tuesday, for the first of many times to come, I was at work when I felt like I needed to be at home.  At the time, I didn’t fully understand it.  I came to know it as the Holy Spirit working in our life.  My boss had lost his son to cancer, so when I said I just needed to go home and check on Mike, he didn’t ask any other questions. 

When I got home, Mike was certainly not ok.  He was combative.  Feverish.  And making no sense.  He fought me on going to the ER, and even as sick as he was, I was no match for him physically!  So I finally got him to agree to go to the cancer center.  We weren’t there 10 minutes before they sent us to the hospital – he was more cooperative with them.  By the time we finally got to the hospital, Mike ended up in ICU and one of the doctors there said that he felt that we had less than 30 minutes or it would have been too late to reverse the infection that was coursing through Mike’s body from his port.  Bacteria had entered the port at the last cleaning (on Friday) and set up camp.  He had sepsis – every organ in his body was affected as the port led directly into his heart which then pumped the bacteria through his entire body.  He had endocarditis which left him with a bad mitral valve.  He was in kidney failure, liver failure, his lungs were struggling, his heart was struggling, his intestines weren’t working – we had 11 specialists coming every day.  He spent 10 days in ICU and another 10 days in the hospital before coming home.  The next 30 days, I had to take him back to the hospital every day for IV antibiotics.  The wound from removing the port had to heal from the inside out so I was taught how to properly sterilize, clean, pack and bandage it every day.  We had weekly appointments with the wound treatment center.  That seemed to be a real turning point in Mike’s overall health. 

It was the following May that we finally started taking Imbruvica.  It had been approved for use in CLL patients in February and Mike was one of the first at our cancer center to take it.  It was an expensive drug – a co-pay of $2500 per month, for 6 months.  KU called me on a Tuesday afternoon and said I needed to pay the $15,000 out of pocket before they would start him on the treatment.  We had to pay the full 6 months because he couldn’t start it without knowing he could take it for a full treatment.  They said I needed the money the next day.  Much to Mike’s dismay, I had already decided that if it ever came to it, I’d either sell the house or take out a second on it – whatever it would take to pay for his treatment.  But I couldn’t do either of those things in 24 hours and I told her that I couldn’t come up with that kind of cash in 24 hours.  It would take me time to get a loan, or a note on the house or something.  Mike asked me what they were saying and when I told him he started crying – something that didn’t happen much – and said “I’m going to die, aren’t I?”  I said “NO!  You are not going to die!  I will figure this out!” and I don’t know what I said to the woman on the phone, but I do know I was afraid, helpless and I was not giving up!  She could hear Mike in the background.  She said “Wait!  No one is going to die.  There are other options!”  I said “You could have led with that!”  She apologized and then started asking me about our income, our house, money in the bank, how many cars we owned and what kind they were.  Within an hour, she called back with the funding from Patient Access Network.  All I had to do was liquidate our savings account and they would take care of the rest.  We felt blessed – we had talked to people at the cancer center who had to sell a car and drain their 401k before getting help with their chemo treatments.  We were fortunate. 

Let me digress for a moment and talk about cancer treatments and the costs.  We were blessed throughout Mike’s journey.  When he was first diagnosed, it was back in the day when you could actually buy a decent health insurance policy for an affordable price!  We were both self-employed so had picked a high deductible plan with an HSA. I had faithfully added to our HSA through the years and was able to pay our full out of pocket the first day of chemo in 2008.  We were able to do the same thing in January 2009 for the new year.  Having an HSA made budgeting easier and we never had a problem with coverage or paying our medical bills.  After being on Social Security Disability for a year, Mike was eligible for Medicare.  We were given excellent advice on a Blue Cross tie-in plan with his Medicare and rarely had any out-of-pocket costs for treatment.  UNTIL….oral chemo came along.  Traditional, infused chemo is covered under medical, not prescription coverage.  Oral chemo is covered under prescription coverage.  If you are of the Medicare age – research those tie-in plans and get the best you can afford.  I do believe it helped Mike’s recovery to not worry about excessive medical bills. 

Back to Imbruvica.  It seemed to be a wonder drug!  It started bringing Mike’s white counts down in the first few months.  At the end of six months, it was keeping his counts at a normal level.  Dr. Elia said “Keep taking it for a year!”  And so he did.  The Patient Access Network continued to pay the out of pocket on our behalf – for FOUR years! 

Imbruvica controlled leukemia, but it did a number on his immune system.  He contracted pneumonia often – every 4-6 months.  In typical Mike fashion, he took it in stride and always bounced back. 

One of the interesting things about Mike’s stroke damage was that on a typical day 95% of the people he had contact with had no idea there was a problem.  Which was a blessing because Mike could live a normal life, doing normal things and not feel like people were looking at him oddly, or feeling sorry for him.  Unless he chose to share it, most people didn’t know he was sick.  They didn’t know that the story he just told was probably not accurate – and may have happened 20 years ago, not last week – but it didn’t matter.  He was happy.  They didn’t know that every week, I made a dry-erase calendar for the side of the frig that told everything that was happening that week by day.  What we were having for dinner every night.  What time his appointments were.  What my schedule was.  Projects we were working on and expected completion dates.  Lists for him for the hardware store.  For the grocery store.  For the pharmacy.  They didn’t know that he would stand at that board every morning and study it.  And go back to it multiple times throughout the day to see what exactly was happening, and what he should be doing. 

One funny story – after I gave up my own bookkeeping/payroll business and took a permanent full time job, Mike wanted to make things easier for me so he would start dinner before I’d get home.  One evening, I came in to Mike bustling around the kitchen in a bit of a tizzy – every burner on the stove was full, there was prepared food on pans on the counter, and he was pulling a casserole out of the oven.  I figured out pretty quickly what had happened, but wanted to tread lightly so he didn’t feel badly, so I said “What’s for dinner?”  He got an odd look on his face and started looking around the kitchen and it suddenly clicked….it was Monday and he had cooked everything on the menu – through Thursday!  He was mad at himself, until he wasn’t and we started laughing.  We took stock of what was there, ate the hamburgers and tater-tots with a salad, because everything else could be re-heated easily. 

Also what people didn’t know about his stroke deficits was that he couldn’t tell me that he was beginning to feel badly.  It became a large part of my habit to study him carefully.  His color, his breathing, his demeanor, his routines.  I learned everything I could about his leukemia and his health.  I learned about his blood tests – that the doctor was watching more than just the white count.  It was important for me to be able to understand the doctors.  To know when Mike was not feeling up to par, because he couldn’t always tell us in words.  I needed to learn how to ask him the questions to get the right answers.  I needed to be with him when he was in the hospital and a doctor came in because 1) Mike wasn’t going to remember what they said and 2) often, he would answer their questions in a way that he thought might get him home quicker, not truthfully.  I was all for getting him home as soon as possible, but I also wanted to make sure that when he got home, he wasn’t boomeranging back!   I don’t have any medical training.  I’m not any smarter than the average person.  But in my prayer time, I asked repeatedly for wisdom and discernment and the ability to care for Mike.  I believe those prayers were answered.  I believe that many times, I knew to take him to the ER because I was urged to do so by the Holy Spirit.  I believe that there were times when we didn’t go to the hospital because I had the assurance that it wasn’t needed.  (And it wasn’t)  We never went to the ER with a “false alarm.”   There were times when we didn’t get to the ER as quickly as I’d have liked, but that was when I had to convince him that it was time to go.  Dr. Elia and her triage nurse came to respect my opinion about Mike’s health and condition. They would tell other physicians to listen to me, to ask me what was happening and to be completely transparent with me about what they were looking at.  I absorbed all I could and truly believe it was God’s work in me that allowed me to understand what they were talking about.  I don’t say this lightly.  This was a gift from God – to be able to comprehend medical terms and conditions that I had no prior knowledge of and to be able to converse with his doctors and nurses on their level.  Invariably, I’d get the question “what medical field are you in?” and I’d confess “I do numbers.  Light accounting.”  Taking care of Mike was truly a blessing.  I believe with all my heart that God gave us time together as a result of our prayers.  And specifically because I asked for wisdom and discernment to care for him. 

That also came with a price….because one of my deepest fears was not being in tune with him.  When I would take my eyes off of God’s provision and think about the enormity of the responsibility of caring for another human life, fear would take over.  What if I missed a sign – what if I’m not home when he needs me – what if I don’t get him to the hospital in time – what if, what if, what if.  What ifs are paralyzing.  And ridiculous!!  What if none of that happens??  During those times, my fear often became irritation.  And irritation, if not caught early enough, could become anger.  It is hard to admit that sometimes I was mad at Mike because he was sick.  Truthfully, I was mad at cancer and that big blank spot on the MRI of his brain.  Ironically, in those moments when I was angry at him, he knew that I was really angry at the disease, and he would comfort me.  He always took such great care of my emotions and my spirit.  Except when he was mad at cancer, too – and then we had to get through it together.  We always did.  Thankfully, our spats never lasted long and neither of us held grudges.  But just that they existed is a regret – what a waste of time.

I have to share that part of caretaking because it is normal.  It’s not right.  It’s not pretty.  But it is normal.  As I talked with spouses at the cancer center or at the hospital – other caregivers – we all had similar experiences with anger.  It would come out of the blue – completely irrational (isn’t most anger?) and ruin perfectly good moments.  And waste precious time that we could and should be enjoying with our loved ones.  If you are a caretaker, or know one, please understand that very real part of the job.  Its 24/7 – like taking care of an infant, but it’s not.  Mike wasn’t an infant.  He was my husband.  And he was still the head of our household.  There was often a fine line to walk between taking care of him and demeaning him.  Mike was a very smart man – he couldn’t always get the right words out at the right time.  Even though he couldn’t always articulate well, his brain inside his head was working just fine and he knew exactly what he wanted to say and couldn’t – sometimes I needed to finish his thoughts.  And sometimes I just needed to shut up.  Sometimes I got it right.  Sometimes I didn’t.

One of his frequent sayings when he wanted to say something but couldn’t get it right “I’ve had a stroke, you know!” 

This blog has been harder to write.  Admitting the deficits – both in his day-to-day and in my own lack.  In my own humanness, I was not sufficient to care for my husband – only through the grace, power and wisdom of God could I be what Mike needed.  It is humbling to know that I could not do this on my own and also freeing.  Because when I relied on me…that’s when the fear came and the anger.  We could only live in peace if I were in the center of God’s will.  Sometimes, I was there.  But sometimes, I wasn’t.   

Next blog – 2018, The Turning Point.