Our Cancer Journey, Part 10: Reflections at the One-Year Mark

Last time, I promised you more details about all the answered prayer, and the many ways the Lord blessed us, throughout the time of our treatment. There are so many things to tell, it’s hard to know where to begin!

Blessed From the Beginning

For starters, the news of the leukemia was not the first time we’d heard there was an issue with John’s blood. He had actually begun to have some abnormal numbers in his routine blood work about 3 years previous to the diagnosis. While they continued to be a bit off, there was never really anything too alarming, so they just kept checking them once a quarter or so. John remained outwardly healthy and seemed perfectly fine, so the doctor wasn’t concerned other than to keep checking. Finally, there did come the day the numbers were alarming, and that led to the first biopsy, which confirmed the diagnosis.

Of course, having bad blood counts doesn’t seem like a blessing, but the knowledge and the monitoring allowed us to catch the disease early, before John even had a single symptom! In fact, when we arrived to check in at the hospital, the charge nurse looked at both of us and said, “Where’s the patient?” John has always taken pretty good care of himself, eating well and exercising regularly, so with no symptoms of disease, he looked normal and healthy. His good health was a huge advantage, and the doctors kept commenting how great it was that he had no high blood pressure, diabetes, or heart disease, as these can cause awful complications when undergoing treatment.  

A Wise Move

Another wonderful provision the Lord made for us is that we live so close to the hospital.  The University of Kansas Medical Center is just about 20 miles from our home. KU has one of the leading stem cell transplant departments in the nation, collaborating with other major centers such as John’s Hopkins. So essentially, we had a team of the best and brightest in the country practically in our back yard, and ready to pounce on John’s disease with everything they knew! We marveled then (and still do today) at God’s provision for us. When we’d moved back here to Kansas City (we’d both grown up here but had moved when John joined the Navy), we thought we were doing it so our kids could know their grandparents and cousins. But God had other reasons, which we wouldn’t know about for over two decades. We are so grateful that he moved us then, and that He let us think it was our idea!

Financial Provision

Shortly after diagnosis and the beginning of treatment came the discussion of how we would pay for it. John had been at his job for only a short time, and would not be eligible for short-term disability. After visiting with the finance person assigned to our case, we had a moment of panic: Would John keep his job? What would we do for income during the year of treatment, during which he would be able to work only sporadically, and that only if he was allowed to keep his job.  Providentially, that moment of panic was brief, as John was informed early on that his job would remain his, regardless of how much or how little he was able to work. He remained fully employed, and fully insured, throughout his treatment.

Even the insurance company was amazing. We had a Transplant Coordinator specially assigned to our case, and she called me every week to see how John was doing, and how she could help. Those calls were such a comfort to me, as I was very concerned about the cost of all this and how we would pay. It turned out our benefits were excellent, and each time I thought something might not be covered, I would get a call from the coordinator letting me know it was all taken care of. Of course, there are always deductibles and the out of pocket max, but even those are being provided by our good and gracious Father.

Early Wisdom Pays Off

One other side note about the finances: We decided early in our marriage that we would live well below our means. We’d agreed I would stay home with the children, so we always lived on one income, regardless of how much it was. This early decision proved very wise as we navigated this journey, and I am so thankful that I don’t need to go out and get a job to pay off our medical debt while supporting a lifestyle at or above our means. Just one example that careful, wise decisions made early in marriage will bear lasting fruit.

There are many more examples of God’s faithfulness to us during this time, but they will have to wait till my next installment. Meanwhile, won’t you take a moment and praise God for His provision in your life? I’m certain we are not alone in marveling at the goodness of God. If you’re reading this, you’ve had some trials in your life too, I’m sure. Why not take the time, right now, to praise God for the many blessings that have flowed from His nail-scarred hands into your life?

Our Cancer Journey, Part Nine: The One-Year Mark

In my last post, I shared how we slowly got back to normal (whatever that is!) as John recovered from chemotherapy, radiation, and a stem cell transplant after being diagnosed with Acute Myeloid Leukemia in May of 2018. It was like a whole new world for us that spring, as we slowly ventured back out into life. We began to go thrift shopping together again—something we’d always enjoyed--and it was so wonderful! In fact, it was almost surreal to be doing regular things again after such a traumatic series of events over the course of a year. We were so grateful, and full of joy at this opportunity to continue life together after thinking that might not happen.

Testing, Testing 123
About this time, they began to schedule our one-year post-transplant follow up testing. This included some tests for GVHD, a disease that can happen as a result of donor cells and host cells battling for dominion in the body. This can be deadly, but by the grace of God, John never had any symptoms of this dreaded disease, which had struck fear in me from the moment I heard about it. Along with those tests, John would have another bone marrow biopsy to make sure he was still in remission. This test would also show whether he was still 100% donor. This is also called a chimerism, or engraftment test. At each of his previous engraftment tests, the results had shown 100% donor cells in the sample. This means it is very unlikely that his own cells will return, threatening a relapse of the original disease.

One complication that had occurred as a result of John’s central line placement was a blood clot in the right atrium of his heart. While that sounds really scary, the doctors did not seem all that concerned about it! The details of that are way above my pay grade, but John did have this blood clot for about a year before it finally resolved. Re-checking this was another of the follow-up tests we had at the one-year mark.

For me, all this testing meant more anxiety (AKA sanctification), and I found myself continually going back to the Lord for strength and help. Earlier that year, I had begun to have some medical issues. This really isn’t a big surprise, considering the stress level we were under, but these were persistent, and I was having some testing of my own shortly before this one-year mark. Thankfully, there was no serious disease, just a chronic condition that could be managed with diet and/or medication. An unidentified growth in my thyroid brought another scare (when you go through something like this, you think every symptom means cancer), so more testing was in God’s plan for me, too. Again, no serious condition was found, but I did have to have surgery after John’s testing was completed.

Provision Through Many Channels

Overall, it was a crazy-making time, and the stress of waiting for results did nothing to restore my sanity! Praise the Lord though, He was with me every minute! Always by my side, the Lord never allowed me to feel alone or hopeless. There were definitely many desperate days, as my journal from that time attests, but never a moment I felt abandoned or without strength. Our God is an amazing Friend. He always know what is needed, and He always provides it.

For me, that provision came primarily through His Word, but a huge part of it was my church. Not just while we were waiting for results, but throughout that year of treatment my brothers and sisters in our local church body were so faithful in calling, sending emails, texts, letters, always letting us know they were praying. The women’s ministry team frequently checked in to see what we needed, and many individuals showed up at my door with sweet gifts, smiles and “virtual hugs” There were many notes in Facebook Messenger and few days went by that I didn’t hear from someone in my church through one of these channels.

Friends and family were indispensable, too. Our boys were very faithful in keeping in touch with both John and me, and talking to them was always encouraging. My daughter-in-law, my siblings, and several friends all came in turn to get me out of the hospital for lunch or coffee, and those were really sweet times of support and encouragement. My take-away from this? If you know someone who is going through something like this, and you’re not sure whether to “bother” them or not, do it! There were times that I turned down offers for one reason or another, but just knowing people were thinking of us, that we had not been forgotten, was so very precious, and a key factor in our ability to keep going. If the Lord leads you to reach out, you should obey.

The Results

OK, now I will get to the results: In a word, they were perfect! Total remission, 100% donor, no GVHD, and no blood clot! Though there were some anxious moments, there couldn’t have been any better news for us on that day we got the results. God was so faithful to bring us to that one year mark, but I believe I would still be proclaiming His faithfulness even if the results hadn’t been so good. God is who He says He is, regardless of our circumstances. His Word tells us that He is faithful, and we can believe it simply on that basis. But oh, how he shows that faithfulness! I’ve shared with you only a fraction of it in this post. Next time, I’ll give you more details about just how faithful He has been to us, providing so many things we didn’t even ask for, and many that we did. 

Our Cancer Journey, Part Eight: Date Night In: Life After Treatment

Last time, I shared about the crazy anxiety I suffered during flu season, and how the Lord helped me and guided me through it. But that winter wasn’t just about fear and worry. There were also some sweet times that we enjoyed as we stayed in and away from all the bugs out there.

A New Tradition
Before John’s illness, we’d had a dinner date every Friday night, rotating our favorite restaurants. During our “education” session before the transplant, we were instructed on the dangers of restaurant food. The clear message was that, with way too many variables in play, restaurants really are not safe and should be avoided. That stuck with us, so we decided not to resume our weekly date nights out. Instead, we had a “date night in” each week. We chose a recipe—something new I hadn’t made before—each week, and cooked together. We also did some baking. We had never cooked together before, and we found that we really enjoyed it! Some weeks, we even dressed up for our date. It was a very special time, and we made some wonderful memories.

We discovered that we had gotten into somewhat of a rut with our date nights, and this new practice got us out of it. Working together in the kitchen helped to build back our relationship, which had become somewhat sterile over the months of his treatment. The patient/caregiver dynamic is quite different from the husband/wife dynamic, and it can be tricky to maintain the marriage relationship in this situation. While John was happy to have me calling the shots during his treatment, as he got better, I saw that I had gotten a little bossy! During that winter, we began to piece back together the “couple” relationship we’d had before, but I think we put it back together a little better and a little stronger this time. Rather than letting things just play out in our marriage, we became intentional about building our relationship, and more active in serving one another.

Relationship Matters

That intentionality is important in any marriage, but especially in a marriage where one or both partners has a disability or long term illness. It is easy to let the relationship slip into all the practical issues in this kind of care, but we must remember that we are first husband and wife. Love, compassion, respect, and service all have to come together in the situation. I think it is easy, especially for women, to go into serving mode and neglect the sweet things that a wife offers her husband. It can be exhausting caring for someone 24/7. There were many days in the beginning when I just wanted to get done with what I was doing, and I noticed that I had become rather cold at times. I am glad the Lord brought this to my attention, and I did my best to add a smile when bringing his pills, or a hug when taking away his dishes.

Those were sweet months, and before we knew it, that long winter was over and we were freer to get out. We went back to church for the first time since the diagnosis in April. It had been nearly a year since we’d attended, and it was so very exciting to be back! Our church family had stayed in close touch with us the whole time, through calls, cards, email and social media. We never really felt isolated from the body or out of touch. I also had sent frequent emails updating the church family on what was happening with John, and I think this also helped to keep us in the minds and prayers of our friends at church. What a blessing it was to get back there, and actually see everyone face to face! We are forever grateful for our church!

Finally, our season of isolation was over. Next came all of the one-year testing. Would he be in remission? Still 100% donor cells? Had his organs come through the chemo and radiation without damage? More on that next time!

Our Cancer Journey, Part Seven: Anxiety, Microbes, and the Sovereignty of God

In my last post, I shared with you all the ways God graciously provided for us during the 100 days of isolation required after a stem cell transplant. Those three-plus months were probably some of the most difficult of my life. Every part of me—spiritual, physical, and emotional— was stretched to new limits and the Lord was incredibly faithful to give me all the flexibility I needed to accommodate those demands.

Battling Fear...Again
Our 100 days of isolation ended on November first, which is pretty much the start of cold and flu season here in the Midwest. This is when the fear and anxiety really began for me. For the first few months after diagnosis, it was all business, as far as I was concerned. I guess you could say I am a doer. When there is something to be done, I get busy doing it. I’ve never been a procrastinator. So, in this case, I quickly shifted from shock at the diagnosis to full-on task mode: Get to the hospital before rounds each morning. Get John’s laundry done. Get the bills paid, insurance ironed out, medications sorted, house cleaned. Get the guest room set up for him to come home; line up guys to come sit with him while I swim, and on and on the to-do list went. By the grace of God, I was up for the challenge, and we survived that first 100 days.

Because of the pace of life during that period, I really didn’t have time to worry about much. I was focused on doing everything to the best of my ability to keep John well. But, after the 100 days, when requirements were somewhat relaxed, I did begin to have some time on my hands and, as has been my habit for years, my mind tended to go to the “what-ifs,” especially regarding illnesses. I became very anxious about the possibility that he could get an infection of some kind as we were venturing back out into the world. When we inquired about precautions to take, the doctors had told us that if I was exposed to a virus, I could pass it on to him without ever actually coming down with it myself! I had never known before that, even if you fight off a virus or bacteria, you could be shedding it in the process to everyone you are close to. 

Panic vs Prayer
At that point, John was still not going out much, but after hearing that from the doctor, I began to be fearful of every little sneeze or cough I heard when I was out and about. I was so afraid that I would unknowingly bring home some devastating illness that I was obsessive about hand sanitizer, and refused to be around anyone who even remotely seemed like they might be sick. If I happened to learn someone I’d seen was sick, I would worry for the next three days until I was sure I hadn’t caught it.  In some ways, it was reasonable to be extra cautious, but I began to see that there was an issue with my trust in God when the anxiety really peaked. It was a constant discipline I had to engage with my mind, to remind myself that God is sovereign over microbes, and that if He had ordained for John to get some kind of infection, then His will would be accomplished in it and He would be with us through it.

I had such a sense of responsibility for John’s well being—really his very life—because it had been so thoroughly drilled into my head during the “education” portion of treatment. That voice that told me his life was in my hands often out-shouted the voice of truth, that God was in control and that He loved us and had a purpose in everything He allowed. I’m not going to say it was easy, or that I had victory every time. But, over the course of that flu season, the Lord continued to help me correct my thinking and He comforted me oh, so many times. He was, and still is, so very patient with me, and I am grateful.

Opportunities to Trust

Even now it is flu season again, and John has actually come down with a couple of illnesses. But each time his own immune system, with the help of an antibiotic when necessary, has kicked in and he has recovered. The Lord was so kind to wait until I had learned to trust Him in it before bringing these sicknesses. He always knows just when and how much to pinch this clay as he molds and shapes me! He gave me that whole long winter to build my trust in this area (with the help of the Holy Spirit, of course), before a real sickness came along.

I continue to marvel at the way God works. His patience and love for us could fill my thoughts for hours. His love and protection for my heart, and His sweet friendship became more and more real as the weeks and months went on. That winter was a sweet time for us as a couple. Next time, I’ll tell you more about that, and the amazing things God did in our marriage.

Our Cancer Journey, Part Six: Parking Lots, Swimming Pools, and God's Grace

Last time, I shared with you some of the duties and responsibilities of the caregiver in a stem cell transplant case. Reading back through that post, I am reminded of how gracious the Lord was to me during that time. Actually, from the time of the diagnosis and onward through treatment, God kept giving gifts and answering prayers. The most remarkable gift He gave me was a relatively pain-free season! I was sure that with all of the walking I was doing during his hospitalizations, coupled with having no time for the regular therapy I receive, I would be in a great deal of pain. I worried that the high standards of house cleaning would put me over the edge, and I would surely be in trouble. But by God’s grace, that was not the case! In fact, this period of time was probably the best my leg has felt in a while. There were a number of things like this, which God just took care of for me. Even finding a parking spot at the hospital each day was superintended by the Lord, and most days I had no problem. (If you know anything about parking at a major university medical center, then you know what I’m talking about!)

Life in Isolation
For the first 100 days after transplant, John was not allowed to leave our home, nor could he be alone. So if I wanted or needed to go anywhere, I had to find someone to come over and stay with him while I was gone. There were several people who volunteered to shop or run errands for me, and this was very helpful. (Also sanctifying, because I had to accept and appreciate others’ methods and choices in the shopping. This was a real eye opener for me, how very controlling and particular I am!) But I got a little stir crazy, and needed to get out occasionally. I also needed my regular visits to the pool to keep my joints moving and to keep up the strength I needed in those days. The Lord was, once again, so very gracious, providing several men who were willing to come over and visit with John while I went to the pool two days a week. The Lord knew how much I needed that water therapy to keep my leg going for all of the work he’d called me to in this season, and He provided it. What a loving Father He is!

This isolation brought growth in yet another area, regarding loneliness. I am a “people person,” and have never been one who enjoys a lot of alone time. God, in His wisdom, knew that this was an area where I needed to grow so He used it (God wastes nothing) to show me how dependent I had become on the company of friends. He closeted me with just Himself, and I began to see that, though I was physically and circumstantially alone (John was here but not really present), I began to have a sense of His presence with me during that time. My need of Him grew as the isolation went on, and I became more and more aware of His presence with me. It was a very special time of growth for me. I spent more time in the Word and in prayer, and developed a new appreciation for friendship with the Lord which has stayed with me.

Something Must Change
One other conviction I had during this time was the level to which I had allowed my biblical priorities to slip. I had begun working at a biblical counseling center several years earlier, and my role there had become quite consuming. What had started as an intention to do some counseling had morphed into a number of roles that added up to almost full-time work. As the days went on after transplant, I realized how low my role as wife and homemaker had sunk in my priorities, and how elevated my counseling center job had become in how I used my time and energy. As each day passed after transplant and John improved, both the hope that he was going to make it and the realization that something needed to change, grew. It was clear that I needed to come back home and realign my priorities biblically. I resigned from my job and began handing down my responsibilities.

The Lord taught me so much during those 100 days, but the main lesson I came away with is that He is God and I am not. Of course I knew this before, but during this time it became clear to me that I was not living this truth. I was not submitted to His will for my life; I didn’t trust Him to see me through hard things; and I had way too much hope and confidence in myself and my own sufficiency. He taught me these lessons through a thousand tiny details and a few grand revelations. He was gracious and oh so merciful to me, and it has made me a more grateful, humble (I hope) Christian. Next time, I’ll share with you how these new perspectives were challenged when the 100 days were over and some freedoms returned.