Stepping back again to September, 2008. We were whirling with new information, experiences, people, doctors. About 60 days into chemo, one day we looked at each other and said “What just happened?” Because Mike’s leukemia was so advanced when discovered, Dr. Elia’s team wasted no time getting started with treatment.
The first thing they did was a blood transfusion. Mike didn’t want to do it – not because he had an issue with a blood transfusion but because he was trying to finish a job at Lake Viking. He fought hard but found out that Dr. Elia was as much a fighter as he – and she won that battle. (And many others through the years!) That was Friday. The weekend, we spent telling family and friends. We had a lot of anxiety as we were still rookies in all of this. I was starting research to understand this disease. We made in-person visits to our parents. Phone calls to siblings. We called our kids and scheduled Sunday dinner so we could tell them all in person and at one time. We skyped daughter Abi in London – one of the hardest calls – at that time, the miles between us were most painful.
Monday, Mike had a bone marrow biopsy. (Let me interject here – this procedure has come a long way in 12 years! That first biopsy was done under local anesthetic with a tool not unlike the hand-crank drill my grandfather used when he didn’t want to get out the power drill. I was in the room for the procedure. It was the only time during his illness that I voluntarily left the room – the pain he was in during that procedure, and watching the doctor struggle drilling into his hip bone was more than I could handle! The 3rd biopsy a few years later, and all subsequent ones were done under general anesthesia. A much easier procedure with less bruising.) Tuesday was the port placement . All of these ended up being at different hospitals due to the short time frame and available schedules. Wednesday was a PET scan.
Our appointment with Dr. Elia to go over the results of all of the tests was set for Thursday, September 11. We were also scheduled for short “training session” about the chemotherapy he would be starting. Mike had finished the job at Lake Viking after his blood transfusion on Friday and we didn’t start another job that week – his schedule was full of doctor appointments and procedures! I was working mornings at a law office and had half a dozen bookkeeping/payroll clients, as well as working in our remodeling and design company. About mid-morning, my cell phone rang – it was Mike. When I answered, he was crying. It frightened me. He was not an emotional guy. Through the tears, he was able to tell me that he had just gotten a call that his longest best friend, Dennis Doty, had died that morning. Mike had called Dennis on Sunday and told him of his new diagnosis. Dennis was working in Springfield and was to be back at the end of the week and promised to bring pizza for dinner with us on Friday. And four days later, he was gone. No pizza. No outrageous stories. No laughs.
After our meeting that afternoon with Dr. Elia, we went to Mrs. Doty’s house and spent time with her and some of Dennis’ family members. Mike was scheduled to start chemotherapy on Monday, the 15th. Dennis’ services were scheduled for that same day. Mrs. Doty wanted Mike to speak at the funeral. We made phone calls to juggle chemo and funeral for the same day.
Just because “cancer” comes into your life, life does not stop. Even as we were facing Mike’s diagnosis and 3-4 year life expectancy, real life – the stuff we lived every day – the joys and the tragedies kept going. We still had jobs to do. Grandkids to babysit. One of our daughters’ wedding was 4 weeks away. And Mike lost one of his dearest friends. Cancer couldn’t rule our lives, because we had plenty of life to live.
And so, we prayed. We prayed silently. We prayed aloud. We prayed together. We prayed separately. Often, we prayed silently while traveling to or from a doctor appointment, holding hands over the console in the car – each of us lost in our own version of need and healing.
To say that we weren’t stressed or emotional would not be honest. We were. But through all of those trials, we were given grace with each other, with schedules, with treatments, with family, with work. God worked in our lives in such beautiful ways that we felt, even when we couldn’t see in the moment.
Mike’s first chemo regimen was a 6-round treatment of Fludarabine, Cytoxan and Rituxan. The schedule was all 3 drugs on Monday, Fludarabine and Cytoxan Tuesday through Friday. Off 3 weeks. Start again – times 6. His body didn’t like Rituxan – which is a biological marker to target the cancer cells, while the other two drugs were the chemo drugs who followed the marker to squash out the bad guys. Over the years, Mike has had Rituxan in combination with several therapies and each time, it has been a difficult drug for him. However, it also did its job well and brought him many years that he may not have had without it. The first dose on that September day (less than an hour after burying his friend who passed from a massive heart attack) had the cancer center nurses dialing 911 for an ambulance to transport him to the hospital! The “heart attack” was “fake” (as in, it did no damage) but was real enough for all of us! The next dose did the same thing, but the infusion nurses were able to reverse the reaction at the cancer center. That drug was only once a month – so after that, Rituxan was administered in a hospital setting at a very slow rate. Rituxan infusion days were 14-16 hours long – tedious & boring, but an important part of his regimen.
Mike tolerated the chemo quite well. He complained of nausea only a couple of times. Chemotherapy is cumulative. These are not drugs that lose effectiveness every 4 weeks, on the contrary, chemo stays in the body for months – 6 months or longer. So, the further into your regimen, the more drug in your system and thus, more side effects. He never lost his hair. As we got into the later rounds, we found that we needed to limit his weekend activities after a week of treatment. He wasn’t really sick, but was more tired than normal and felt weak – napped more, slept in later, to bed earlier. I tried to plan activities that involved our grandson coming for a visit because that seemed to inspire him. He worked throughout his treatment. For the most part, we were able to schedule lighter jobs for treatment weeks, although there were some instances where he needed to finish a job and timing couldn’t wait.
He had won a bid for replacing windows on the 5th floor of a hotel on the Kansas side. Windows were late delivering and he didn’t get them installed before starting his week of chemo. It was winter – and a nasty cold spell. If you’ve ever had a port, then you know that when the port is accessed on Monday, the “tube” access is left in place for the week of treatment and then removed on Friday. Mike always said that when that port was accessed, cold weather really bothered him – he said it felt like ice was just flowing right through that port straight into his heart. It was painful for him. So on Tuesday of infusion week, he and Isaac, our son and employee at the time, were finishing installing these windows on a scaffolding 5 floors in the air in 18° weather with a tube hanging out of his port (direct access to his jugular vein). Isaac called me and said “He’s freezing, can’t stop shaking, weak, pale and doesn’t need to be out here. I don’t know what to do.” I said “Isaac, you’re bigger than he is. If he’s that weak, get his keys, put his butt in the truck and drive him home!” Then I got on the phone with Mike and actually yelled at him (if you know Mike, you know that didn’t happen often!!) I gave him two choices, he could let Isaac bring him home, or I was leaving my work and coming to get him myself. He let Isaac bring him home. When we went to his infusion later that day, I complained to the nurses about him working that morning and that it was foolish for him to push himself so hard. They said “Oh, if he feels like working, don’t discourage him! It’s important to feel normal!” In frustration, I said “ASK HIM WHAT HE WAS DOING!” After he told them, they agreed with me that he did NOT need to be doing that kind of work during chemo! I suggested that before they tell their patients it is ok to work, that they ask what kind of work they do! We laughed about it later, but at the time I was not laughing!
His final round of chemo was February of 2009. A bone marrow biopsy was repeated and at our March appointment with Dr. Elia, we celebrated “complete remission!” We were cautioned that the leukemia would return – 100% guaranteed that it would come back. The longer he went between relapses, the better his prognosis. She said if we could get 2-3 years before relapse, that would be a good sign.
We got busy returning to normal. Mike got stronger and had more stamina every week. We were not scheduled to see Dr. Elia for another 3 months. Spring came, and we were enjoying warmer weather and all the activities that come along with that.
May 13, 2009
Mike got home from work and we ate dinner as usual although he seemed a bit cranky. I had been cleaning house that day and had rearranged the furniture in the living room – one of those activities that I did often that he still was not quite used to. After dinner, he went to get a shower and seemed to take longer than normal. I could hear him in the bathroom slamming the shower door and making a lot of noise. He still seemed perturbed about something and I wondered what was upsetting him. He came out of the bathroom, holding his socks in his hand and half-stumbled to his chair, kicking the ottoman in the process. He had a troubled, angry look on his face and I said “What’s wrong?” He just looked at me, holding his socks out to me. I said again “What’s wrong? Are you ok?” Again, he just stared. I said “Are you mad that you tripped on the ottoman?” This time he shook his head no and stammered “stroke.” I jumped up and grabbed my phone and started dialing 911 and he said “NO!” I said “You’re going to the hospital!” He took the car keys out of his pocket and handed them to me. I helped him with his slippers, got him to the car and off we went. About halfway there, he began talking – words were still slurred and one side of his mouth was drooping, but he was talking. He said he had been shaving in the shower and felt funny – then realized he wasn’t touching his face with the razor. He realized he couldn’t really control his right arm. He finished shaving with his left hand, and was able to get out of the shower and dressed. He said it was scary. As we passed 291 on I-70, I saw him out of the corner of my eye reach for his cigarettes. I said “SERIOUSLY???” He said “Might be my last one” – and he smoked a cigarette. Yep – just had a stroke and on the way to the hospital, he pulled out a cigarette to smoke it. And yep, it was his last one!
He called his mom and told her we were going to the hospital because he thought he had a stroke, but he was feeling better so he wasn’t sure. He did not call any of the kids and told me not to. Mom met us at St Mary’s. He was in good spirits, they were running tests but because I had told them of his leukemia and recent chemotherapy, the ER doctor could not administer the “clot buster” drug that would normally have been used until they heard back from his oncologist. While we were waiting for test results, Mom and I watched as he slumped to the side while a nurse was checking his vitals and I said “He’s not ok!” The nurse didn’t really respond, but that 2nd stroke that we watched is the one that took away his speech and did the damage to his right side. He was admitted to the ICU about 2am. He was somewhat alert – in and out of consciousness, but was insistent that I not call the kids until after 7 when they would be up. The hospital made me leave. They said he was stable, in ICU, I wasn’t allowed to see him until after 8 and if they needed me, they’d call. Driving home, the reality of the events of the prior evening hit me like a ton of bricks. Looking at the clock, I realized that one of our girls would be up, preparing to leave for work as her shift started at 3:30 AM. I called her to have someone to talk to on that drive home.
I mention that part of the story because that innocent phone call has come back to haunt me many times in the years since. Mike was adamant with his mom and I that he didn’t want me calling the kids until morning. At first, because he thought it was nothing and he was coming home, and after the 2nd stroke, as he would drift in and out, he thought it too late to bother them. His speech was difficult to understand, but not impossible. Mom & I both knew what he wanted. However, because the daughter I called was “mine” in our blended family, feelings got hurt and a grudge has been carried all these years.
I share this to say, please don’t judge the actions of others in the midst of crisis. The only reason I called “my” daughter was because I knew she was already up getting ready to go to work. Mike didn’t want me waking kids up in the middle of the night so I didn’t. That phone call was mainly for me. My husband, my partner, my best friend had finished his first round of chemo for leukemia. And just had a stroke. Was lying in a hospital bed in ICU and the hospital told me I couldn’t stay. I was driving home alone and needed someone to talk to. I knew she was awake and while he didn’t want me waking anyone up, it seemed like a logical decision.
And for Mike, he never had “steps” in our family. Our kids were our kids. Didn’t matter their last name or what house they grew up in, once we were married, our kids (and subsequently their kids, our grandchildren) were “ours.” Not all of our family believes or behaves the same – but for Mike and I, we believed it, lived it, and loved all the same. There are some that we see more often than others, and may be closer to in some respects, but our love for each is unconditional and unending. We have learned, though, that we cannot change other hearts. Our reality, however, was our kids were (and are!) our kids.
The hospital stay after the stroke was short – he came home on Friday, although speech, physical and occupational therapy took months.
There was no definitive cause for Mike’s stroke. There were several risk factors that I will share – take them seriously. We could have done more for his health prior to his leukemia diagnosis and the subsequent stroke.
- Having cancer – this risk factor is minimal, but it does increase the risk.
- Taking chemo – this is a risk factor during treatment, but not after. Mike’s stroke was exactly 90 days after his last treatment.
- Smoking – Mike was a smoker. The stroke changed his taste and his sense of smell so that he never again had a desire for a cigarette. Effective, yes. A recommended way to stop smoking…no. If you smoke, please stop before your stroke or heart attack.
- High cholesterol – Mike ate fried anything. And did not like vegetables. Nor chicken. Or fish unless it was fried. He loved red meat. And he loved potatoes. Anything sweet. But his cholesterol was never an issue.
- Sleep apnea – Mike was a snorer. He had a sleep study post-stroke which showed mild apnea. He was prescribed a c-pap machine and wore it nightly for the rest of his life. Once he started using the c-pap, he slept more soundly, was up early on weekends, felt more rested and had more energy. If you snore, get tested. If your spouse snores, get them tested. This is a real thing.
The stroke changed Mike in many ways. There were speech issues and cognitive deficits. When he was tired, his right foot would drag and his right arm would draw up with the hand turned inward. The speech, he compensated for by saying something silly or outrageous when he couldn’t find a word. If he couldn’t keep up with a conversation, he would change the subject or, in later years, sit quietly trying to sort out what people were saying. We continued our remodeling business even though it was getting more difficult to find work. When Mike would bid a project, he would often use “window” for “door” or “cabinet” for “window” so people who didn’t know him didn’t have a lot of confidence in what he was saying. Work he did was sometimes “out of order” – and we got to a point where I had to walk him through each days tasks at the beginning and end of each day to be sure everything was done well.
At one point after the stroke, he was working on a deck and couldn’t remember completing certain tasks. He’d get halfway home and call me and ask if he told me that he had done a step – that job, I hadn’t talked to him much during the day so he’d have to drive back to the job and look at it again. That evening he drove back to 3 times before he could relax and know that he had finished it properly and the deck was soundly built. In fact, last summer, we drove by that house to see if that deck was still standing! It was.
In July of 2010, we met with Mike’s neurologist who ran follow-up tests and talked with us at length about Mike’s daily routine, the work he was doing and the issues we were having while keeping our business going. Mike had to explain everything to me, I would write down each step in the process, and then as he was working, he’d call me to verify the next steps. Dr. Avasarala told us at that appointment that he would not get any better, and that the stress of trying to do that kind of work was too much for him. He said that Mike should consider disability. Mike said “Absolutely not! I’m not going to live as a sponge!” Dr. Avasarala said “No, I’m not talking about being a sponge. You’ve paid into Social Security your whole life, and now you are unable to work. Part of Social Security includes disability payments, taking out what you’ve paid in. This is not welfare, it’s what you’ve earned. This stress will kill you. And if not you, it’s going to kill your wife. She can’t keep doing her work and yours.” Mike still said no, but that he would think about it.
About a week later, we got a letter from Dr. Avasarala. Included in his letter was his recommendation to SSA that Mike be approved for disability. We talked some more. Prayed a lot. Cried over our own pride. And in August of 2010, submitted a claim for disability. I did it all online. We prayed about it and said if that was the course we needed to take, then God would handle it. SSA called two weeks later and had scheduled Mike to see a neurologist and a psychiatrist. The neurologist said he could not follow direction due to cognitive dysfunction and had some right-side limited motion. He should not climb ladders due to balance issues and should be careful with power tools. The psychiatrist said he wasn’t faking it. Social Security disability was approved and we rec’d his first check in October. Since then, we have discovered that to be approved that quickly was unheard of. And to do it all online without hiring an attorney was also unusual.
It was a difficult decision. Neither of us liked asking for help. But looking back, I do think that certainly prolonged Mike’s life. And he never liked saying “disability” – even though he was only 53 at the time, he told everyone he was “retired.”
The leukemia was still in remission. Our remodeling and decorating business closed. I still had my small bookkeeping/payroll business and we began creating and selling art as a way to keep Mike’s brain stimulated, his schedule full and provide a bit of income for us as well. At that point, there were still a lot of medical bills coming in, but we always had enough. And, we had each other. Our biggest battle in those days was not leukemia or chemotherapy. Not the stroke or the damage it caused. Our biggest obstacle was always fear. Fear the cancer would come back. Fear that he would have another stroke. Fear that he would never get any better. Mike battled many hardships and his confidence and tenacity inspired me often. But in those days, post-stroke, fear was very real. But life was busy. And neither of us were people who would sit and mope about the bad stuff life had thrown at us. So, we lived. We went to weddings. We celebrated more grandbabies. We created some really cool art. And we enjoyed life together.
Next time….Relapse and Treatment Options
Be Still In Motion 