This section has proved to be the most difficult to write so far. I don’t know if it’s because it’s the freshest – so I remember more of the feelings, or if it’s because it was such a turning point in his health. Or possibly because this is about when we started seeing the difference in how others related to us. This is another one of those topics that are sometimes difficult to talk about, but it is a very real phenomenon. We talked to many others at the cancer center who, after a very lengthy illness, also found people pulling away.
About this time in Mike’s disease, we realized that gradually, friends had disappeared. Some family members had started pulling back. Not all – we were blessed with an amazing support system through the years. But overall, there were fewer phone calls. Fewer invites. Fewer visitors. More who tended to nod and wave from across a room rather than come close for conversation. Mike was a people guy. For him, being with people raised his spirits and kept his mind off of his health. This part was difficult for him. Often, I’d catch him in his chair – especially on cold winter days when he really couldn’t get out – staring out the window, wishing someone would pull in the drive or call to talk. We never knew if it was because he had survived so much perhaps they thought we were making the whole thing up – that he wasn’t really sick – after all, we’d been saying he was failing since 2008! Perhaps they just got tired of hearing about his health and doctor visits. Perhaps it was because they simply didn’t know what to say. Often, we didn’t know what to say, either. We didn’t know who was really asking “How are you?” or who was just exchanging pleasantries and had no desire to hear anything other than Mike’s usual reply of “Wonderful!”
There are so many feelings and thoughts wrapped up in this section – not the least of which was the many losses we had. Too many friends and family had succumbed to cancer and with each loss, came the certainty that we, too, would face Mike’s death – and it was coming faster.
Mike started taking Imbruvica, an oral chemo in May of 2014. Imbruvica was a game-changer for us. It was a daily dosage – 3 pills a day. The pharmacist and doctor wanted him to take them at the same time every day, in the morning, with food. He had a bit of mild nausea (he called it “queasiness”) along with a very interesting side effect – an overwhelming fatigue. He simply could not keep his eyes open – a 15-20 minute nap was all he needed and he was good to go. Since he never wanted to eat when he first got up, we didn’t start his plans for the day until mid-morning. It didn’t seem to matter where he was or who was around, he took a nap!
This medication did control the leukemia. It also weakened an already weak immune system, lowered platelet counts and caused anemia. The risks of those side-effects were, on the whole, worth taking the medication. Pneumonia was Mike’s “go-to” infection. Not uncommon. What was odd about his pneumonia is how quickly it would come on. In all the years we dealt with his immune system, it still amazed me that he could go from zero-to-sixty in the blink of an eye.
I never left for work until he was out of bed, so I could make sure he was good. I’d usually call mid-morning, over lunch, and again mid-afternoon to say hi, check on him….and because I just liked talking with him. There were days when I’d leave for work about 7:30 and he’d be out of bed, drinking coffee, talking about his plans for the day. By 10:30 or 11 when I’d call, he’d be a bit confused or just sound “off” and I’d know he was in trouble.
When I’d get that hot flushed feeling that started in the pit of my stomach and spread up to my face, I’d start praying. I would take deep breaths to calm myself, ask him the appropriate questions if he was able to answer me, and listen….for guidance from his answers and mostly from God. I was never left without answers. I can’t say it was an audible voice, it wasn’t. And it wasn’t really a “feeling” – it was not an emotion – it was just a deep knowing. I can’t explain it better than that. But when you’re listening for God’s voice, there is just a deep knowing that the knowledge you have isn’t from you.
Most of the time, there was time to get home and get him to the ER, but there were a couple of occasions when time was of the essence – I’d call my dad who lives just over a mile from us and he would pick Mike up and I’d meet them at the hospital.
After a particularly lengthy pneumonia battle in July of 2016, Mike started taking intravenous immune globulin (IVig) infusions every four weeks. IVig is a blood product made from serum – each dose actually has serum from between 1,000 and 15,000 people! It is clear, thick liquid that bubbles up into the glass bottles as it’s infused – if you’re in the infusion room near the window on a sunny day, it casts a rainbow of colors through the bubbles. Since Mike no longer had a port, they had to start an IV on him for each infusion – his veins got so scarred that it became quite difficult to get a line on him. Some of the infusion nurses refused to torture him – some took it as a challenge! We made some good friends in the infusion room. Mike made friends everywhere we went! We started getting up an hour earlier on IVig days so that he could drink a couple of glasses of water to be better hydrated – making his veins plumper and easier to find. The little things we learned! IVig infusions started out slowly, and could be ramped up every 30 minutes – but it was still a 2 ½ hour infusion. Couple that with labs before starting and the occasional doctor appointment, IVig days were long and draining. IVig is an interesting process. Some blood transfusions actually encourage your own blood to start behaving better. IVig is not that way. When he got the IVig he had a huge burst of energy for a few days. His immune system was at its peak, it would continue for a couple of weeks, then start fading. So in the week or so before an infusion, he was at his most vulnerable. We didn’t pay a lot of attention to the cycle, but in cold/flu season we were a little more aware of when he would be most vulnerable and ate out less and stayed away from crowds.
As Mike seemed to get weaker and have more frequent infections, we decided that it didn’t seem to make much sense to be doing everything we could to boost his immune system – while our art business took us out in inclement weather and put him in contact with 5,000-10,000 people every weekend! We also spent a lot of time in dirty, moldy, dusty junk yards or basements of estate sales, finding parts and subjecting him to who-knows-what kind of germs! So we made the difficult choice to close our business. October of 2017, Baldwin City Maple Leaf Festival was our last art show. It seemed like people knew – even though we didn’t advertise it. That weekend, we sold all but one piece – a truck making its final trip of the day back to the barn. That piece now hangs in the window of the shed Mike built for me – a “she-shed” before I knew that I wanted a “she-shed!”
After another lengthy and quite serious battle with pneumonia in January 2018, Dr Elia opted to take Mike off of the Imbruvica. We knew that eventually leukemia would return, but she felt that his immune system was so compromised that Imbruvica was too big a risk to continue and his counts were really good. We continued IVig, but by March, Mike’s white count started rising. In April, she put him back on Imbruvica. By July, it was clear that Imbruvica was no longer in charge – leukemia had taken over again. A bone marrow biopsy revealed that 90% of the white blood cells in his marrow were leukemia cells.
Dr Elia sent us back to the main KU campus to meet with one of leading physicians in the hematology/oncology department. Dr. Elia is great – Mike never wanted to change oncology doctors, and never did. While she did hematology oncology, her true specialty is breast cancer. I’m convinced it was not accidental that we ended up on her schedule on Sept 4, 2008 – it was another part of God’s plan. We’d never met Dr Yacoub, but he had been following Mike’s case for a number of years. He really wanted us to consider bone marrow transplant again. He told us that without transplant, Mike would not survive a year. He did also tell us of a new oral drug that sounded very promising, Venetoclax. Venetoclax is not a traditional chemotherapy drug, but is a BCL-2 inhibitor – basically it works by blocking the action of proteins in the body that help cancer cells survive, thus killing the cancer cells. But Dr. Yacoub was set on BMT. We then met with Dr. McGuirk, head of the BMT program. He did the same song and dance routine we heard 5 years earlier, but didn’t quote any percentages. (I have to say here, that every time we went to talk to the BMT people, we felt more like we were buying a used car rather than seeking cancer treatment. We always felt like we were being “sold” on the procedure, rather than it being a medically recommended option.. They were passionate about their work, and excited to offer a chance to save Mike’s life, but it did leave us both feeling a bit more like a sales pitch. That day, as Mike left, he said “Did he just sell us some Amway?” I don’t know if it was just how we took the presentation or if others have felt that way as well. It was just an unusual meeting!) I asked the question that changed our outlook on Mike’s future. “Dr McGuirk, since you’ve been doing these transplants on CLL patients like Mike for 5 years now, are you 5 years better? Are your successes better, your morbidity lower? What have you learned?” And his answer “I wish I could say yes, we are better. But in truth we are not. Our morbidity rates are higher than we expected. What we’ve found is that BMT is better done early in the disease. Waiting for other treatments to be tried is not best for our patients. Mike’s window is closing – it is nearly shut, but it’s still your best option.”
We came away realizing they were telling us that BMT was the Hail-Mary pass at the end of the game. We were stunned, because we thought it was only half-time and he was telling us that we were in the fourth quarter, at the two minute warning and we were losing!
Once again, we made a trip to Omaha to visit with Dr. Voss. She read his chart, examined him and reviewed the facts with us. He was not in remission. His marrow was full of rogue cells. Even though his sister was a 9 out of 10 match and was more than willing to give her brother a chance at cure, studies had shown that opposite-sex sibling transplants were not as successful as same-sex. They were now both over 50, which also reduced the success rate. Everything that Mike had been through, the scarring in his lungs from repeated pneumonias, the damaged mitral valve, the multiple chemo regimens, the stroke – all of it made his chances at success much less. She wouldn’t even attempt to put Mike through BMT at this stage in his disease. She did agree that BMT would be a Hail-Mary pass at that point – but she felt there was a better game plan. He could spike the ball and call a time-out. He had other options. Her recommendation was to start Venetoclax, but to pair it with 6 months of Rituxan. Mike asked her about his reactions to Rituxan. She didn’t back down, her recommendation was Venetoclax with Rituxan. We said ok and came home to start yet another treatment process.
Venetoclax is known to be tough on kidneys, especially when the tumor burden is high. Mike’s white count was in the mid 150’s (normal is 5-10) so his tumor burden was quite high. In order to be able to immediately treat heart or kidney reactions, Mike was admitted to the ICU to begin Venetoclax. Checking into ICU was comical. Mike announced himself at the door, they let us in and said he was scheduled for room 5, but the patient hadn’t arrived yet. Mike said, “Yes, I’m right here.” She said “No, he’s not here yet – see the room is empty.” Again, Mike said “But I am the patient!” The nurse was quite confused – they don’t get a lot of patients coming into ICU on foot! Also, ICU rooms don’t have private bathrooms….so, Mike would have to trot down the hall to the public bathroom or use the in-room commode, which he did not appreciate! He started the drug at 20mg a day for a week, 50 mg the next week, then 100, 200 and finally the 400mg dose that he stayed on. The first 3 weeks, he would check into the ICU for day 1 and go home day 2. The last 2 dosage changes, he was on the Telemed wing with a regular room. One of our daughters said there was just something wrong with admitting a man to the ICU to give him a pill to watch what happens! Ever the prankster, about 15 minutes after the first dose, his mom and I were quietly working crossword puzzles when he started twitching and gasping – I immediately dropped the newspaper and jumped up as he burst into laughter. What a clown!! Remarkably, he didn’t have any major side effects from the Venetoclax, so when he got up to his regular dosage of 400mg, they started Rituxan. I cannot remember how often he did Rituxan infusions, but he got through them with few issues.
When we reported back to Dr. Elia that Dr. Yacoub had given him only a year to live without the BMT, she said “He doesn’t know you! He can’t say that – he has no idea that you are a fighter, you are strong. I do not believe him, and you shouldn’t either!” So, we didn’t. We just kept living!
By then, our grandbaby count had grown to 10 – eight boys and two girls. We were so blessed! In October that year, we found out that Number Eleven was on her way – and she made her appearance in March of 2019. Mike was here to hold Emery, with a smile as big as with number one. Having new grandbabies made his smile and his heart bigger!
Mike was a kid at heart. Which is probably why he was such a great Grandad! He had such a special and unique bond with each one of the grands. He was always up for an adventure, would drive 75 minutes (one way!) to watch a 45 minute basketball game. He would endure heat, rain, mosquitos and cold to watch baseball, tee ball or football.
He would take the kids to his garage and encourage them build and create. He was known to shock moms by handing a 4 year old a full can of spray paint and saying “Go for it!” He participated in treasure hunts and made up stories about lava rocks. He made sure we always had favorite candies and handed out those candies freely, squirted Redi-Whip into open mouths, proclaimed Pop-Tarts “healthy” because the box said “Enriched,” believed in ice cream for dinner (It’s milk and eggs, right?) He taught them all about John Wayne, Gunsmoke, The Rifleman and Open Range. He made popcorn the old fashioned way, on the stove top with real butter and fake (processed) powdered cheese. He fried donuts out of canned biscuits and made killer eggrolls.
For years, eggroll night was a sure way to get all the kids, siblings and parents over for dinner was to say “Eggrolls!” (Or at least before vegetarian, paleo, keto, or whatever the diet-du-jour) Making 12 dozen eggrolls took hours. It was a huge production, cooking meat, eggs, boiling noodles, rice, wrapping, frying – and the kitchen seemed coated in cooking oil and the house smelled like a fry pan. They were delicious! And horribly unhealthy! Our last eggroll nights, Mike wasn’t up to helping, but he was certainly overseeing my work to be sure it was up to his standards! He had a reputation to uphold in the eggroll kingdom! With so many diets, and a few grandkids who won’t eat them – eggroll night is less a draw than in years past, but even so, it is usually good for getting 10-12 over for dinner.
He loved holidays, birthdays, Sundays….any days he could get the family to come over. Usually, he would sit in his chair at the dining room table where he had view of who was coming and going and was in the middle of all the action. He loved “drop-in” visits. If he had his way, every holiday, every birthday party, every barbecue, every event would have been at our home. He loved the activity, the laughter, the talking, the relationships built between cousins, aunts and uncles, siblings.
Starting Venetoclax, along with his IVig treatments, kept him out of the hospital for 7 months. He seemed to be doing well during that time. He was really enjoying life. We weren’t looking for parts for art, but he had gotten hooked on estate sales. He went all over the area finding his treasures. He gathered quite an interesting collection of “stuff!” He looked good during that time and he seemed to really feel good.
He ended up back in the hospital with pneumonia in early May of 2019. This time, the COPD had done enough damage to his lungs that he was not able to come home without supplemental oxygen. When we set up the oxygen at home, we thought that it would be a temporary thing – 2-3 weeks at the most. It was not. It became a permanent part of life, watching out for that 50 foot of green tube snaking through the house. Even the littlest grands learned not to be walking on Grandad’s air.
With all of the 2018 fall doctor appointments and the new medication, weekly hospital stays and then the holidays, I put off my annual check-up. By May of 2019, I had a bump on my neck, right under my jaw so thought I should get back on top of my own health. I thought it was an enlarged salivary gland. After a physical exam, CT scan, ultrasound and needle biopsy, I was diagnosed with non-Hodgkin’s b-cell follicular lymphoma. As soon as the doctor in North Kansas City gave me the diagnosis, he said I needed to see an oncologist. I pulled out my phone and gave him Dr. Elia’s contact info. I asked him to send my records there. When we got to the parking lot, I immediately called Trish, Dr. Elia’s nurse. Fortunately, my needle biopsy had been performed at a KU clinic so she could pull up the results while I was on the phone. The first thing she said was “Don’t panic! This is just a bump in the road. I hate this for you guys, but you will be fine, truly. You will have this for a really long time – 15-20 years probably!” She went on to advise that I contact Dr. Chuda in their office because she said, truly, this is a long term diagnosis and he is young and will be there for me. Mike was simply devastated. Even with her positive news, his spirit was crushed. I know that his mind was full of fear – not just for me, but for himself. I think I’ve made it clear in these blogs that he was very dependent on me. And he was so afraid of the treatment that he had endured – he did not want me to go through chemo. He couldn’t stop crying. He kept saying “I thought if I had it, you wouldn’t have to!” He felt that somehow he had let me down – completely irrational thoughts but when faced with the unknown, we do tend to think irrationally. Trish said “You’ll be fine. You’ll research this, you’ll find the facts, you’ll see that this is an easy one.”
So then, rather than praying for wisdom and discernment for me to care for Mike, we began to pray for that wisdom and discernment to apply to my health so that I could stay healthy for him – to continue to care for him.
When we got home that Friday night, I did start reading and researching. One of the first things I wanted to know was why? So I looked at the causes. I was shocked when I saw “Methotrexate” – yes, remember I wrote of my rheumatoid arthritis diagnosis several years ago? I’d been taking methotrexate since then. And I do remember the doctor saying “This is a drug you’ll take the rest of your life. It comes with risks. It can cause cancer. It is a strong drug, but it is imperative that you take it.”
The medicine I was taking to enable me to live moderately pain-free, had now brought lymphoma into our world.
I immediately stopped the methotrexate. Contacted the RA doctor who basically told me if wasn’t going to treat the RA, not to come back. I haven’t been back. I have changed my diet. I’ve lost some weight. I use over the counter naproxen-sodium when I must. I exercise. I stretch. I keep moving. I ask God to take away the pain. I have days that are really, really uncomfortable. But God gives me the strength to keep going. To not give in to the desire to stop moving. I know if I stop moving, I’ll stop…and I can’t do that! We have all these grandkids to play with!!
A PET scan indicated that the lymphoma was housed all in one lymph node. The offending lymph node was removed for further biopsy and the initial diagnosis confirmed. My bloodwork was completely normal. A bone marrow biopsy showed no sign of disease in my marrow. I am due for a six-month checkup in June. It is possible, that by stopping the methotrexate, the lymphoma will not return.
The cancer center recommended radiation. I refused treatment at this time. We both felt that I needed to be 100% to care for Mike and a 3-4 month radiation regimen would leave me weak, susceptible to disease and possibly unable to care for him when he needed me. We prayed and asked for direction and both had peace that this was God’s plan.
Just as we prayed for healing for Mike, we have prayed, and I continue to pray, for healing for myself. I do believe that He paused this so that I could finish my care for Mike. I pray the pause is not temporary. I want to be here for our grandkids. I want to make sure they remember their grandad. I want to be sure they know that he loved Jesus, relied on Jesus for strength. I want to be sure they grow up knowing who Jesus is and why it mattered to Grandad, and to me. I don’t know if that is selfish to ask for time with them, but I do ask that whatever the outcome, that I be in the center of God’s will. And as He has throughout this journey, God gave us peace, strength, comfort and wisdom.
By July, Mike’s breathing wasn’t getting any better. We went again to his pulmonogist in Eastern Jackson County and she wanted to do a scope on his lungs to flush them out, take some cultures and do some biopsies to see what was going on that was keeping him from oxygenating properly.
During that test, his lungs stopped functioning. I’m not sure the process, but she told me that she was able to get them to start breathing again, but she had to pull out before getting biopsies. She did get the lining scraped and got some brushings for cultures. It was weeks before any results came back – and the only thing that grew was bacteria normally found in the mouth. Nothing that would explain his inability to breathe.
Dr. Elia wanted to run some further tests after seeing the results of his bloodwork while on Venetoclax. She ordered another bone marrow biopsy. We went to see Dr. Yacoub again for our annual visit and were amazed, awed, cried with tears of joy when he walked into the room and said “I’ve looked for your cancer everywhere and I cannot find it! You, my friend, are in remission!” This was the man who told us 12 months ago that Mike would not survive 12 months without BMT! And now, he was declaring Mike CANCER-FREE after 8 years of chemotherapy! We praised Jesus. We laughed. We cried. We said “Now, if you could just breathe!!”
Dr. Yacoub suggested at that point that we switch all of Mike’s care to KU doctors – he felt that the breathing issues were a result of the chemo and drug therapies and thought perhaps by having all of his specialties under one roof they could better communicate and have better success treating him. Dr. Yacoub was anxious for us to enjoy the opportunities that were available to us now that he was in remission. We were quite fond of our infectious disease doctor, but the other specialties were simply referrals from the hospital through the years. We liked them, but weren’t necessarily tied to any of them. So we started making the switch to the KU team.
This time, I prayed that God would send us the right doctors with the right answers. He did not disappoint.
Coming Next – The Final Chapter.
Be Still In Motion 