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 Four: Finding a Match by the Matchless Grace of God

(You can read Part Three here.)

Finally, after 2 weeks, the results were in and our younger son was a match! Oh, how we praised the Lord that day! While both boys were a genetic half match, there were a few details of the genes that made our 2nd-born the better donor. He was eager to jump in, and began having tests to make sure he was healthy enough to donate. We will forever praise the Lord for our son's sweet spirit and willingness to jump through all the hoops the doctors asked him to. He also suffered some pain, as the drugs he had to take to increase the number of stem cells he produced gave him all-over bone pain for the weeks he was treated. We are so grateful to God for giving us this son, who literally saved his father's life! I'm certain our older son would have been equally happy and eager to help. We are truly blessed parents.

Preparing for Transplant

Once we had the donor, the doctors sent us all over town to various clinics for testing to make sure John was healthy enough for the treatments leading up to the transplant:  First, he would need more and stronger chemotherapy to blast away all of his native bone marrow and the cells therein. The purpose was to make sure there were no cells in his body that would fight against the donor cells for possession of his bone marrow. In addition to chemotherapy, John had total body irradiation the day before the transplant. 

Radiation day was particularly difficult, as the machine they would be using went out of commission just before his appointment. Apparently there was some small screw missing, and we had yet another opportunity to think on and pray for the tiniest details of this very precarious process. John had already had his 5 days of chemo, and today was radiation. Tomorrow was the transplant, and the timing had to be exactly that. This radiation had to happen today! We waited over six hours before they finally got it running, and John had his radiation. I think that was possibly the most exhausting day of the entire journey.

To the Brink of Death
So, through chemo and radiation, they would basically have to bring him as close to death as possible, before bringing him back with the new cells; and I will tell you that looking at him, it was clear they had succeeded! He had lost a lot of weight, every hair he'd ever had, and most of his energy. Yet, my husband still seemed strong to me. He remained positive, trusting the process, as they say, but also trusting the Lord who was reigning over it. On transplant day, we all went to the hospital: Our son to one floor, to donate the stem cells, and John and I to the transplant unit to check in for what could possibly be another month-long (or more) stay.

Once I got John settled in, I went down to visit with our sweet donor, who was comfortably ensconced with blankets, pillows, and of course his headphones. (He is never without his headphones. The kid lives for music!) As complex and high-biotech as stem cell harvesting sounds, the actual process looks quite simple: The blood goes out of the donor's vein through a port, runs through a machine (it looks a lot like a dialysis machine), the stem cells are deposited into a bag, and the rest of the blood goes right back into the donor. That's it! As I sat and watched the bag slowly fill up, I was reminded again of the tiny details that were monumentally important here. This little bag had to be transported up 2 flights and brought to my husband's bedside. I'm sure you can imagine all the things that went through my mind that could go wrong here!

And Now we Wait
The process, by God's grace, was extremely smooth, and John received the cells through his own port just moments after the bag was disconnected from the machine downstairs. In a slightly anticlimactic 15 minutes, the bag was hung on the IV pole, the tube was connected, and in the cells went, off to do what they do best--become white cells, red cells, and all the other kinds of blood cells that a stem cell is capable of becoming! It is a miraculous, incredible, unfathomable miracle of God that this could even happen. Yet, here we were, watching it. All I could do was praise God and pray that it worked! Now the real waiting would begin. Would the cells do as predicted, becoming new blood cells untainted by leukemia? Would they multiply and increase, strengthening and bringing new life to his body? How would the battle between the old cells (what was left of them) and the new ones play out? Only time would tell. Now, as we waited, we would have the most profound opportunity of our lives to trust the God Of All Life.

The Pressure's On!

It’s holiday time! I don’t know about you, but I feel a lot of pressure this time of year. Christmas shopping is just about the perfect storm for someone with chronic pain and mobility issues. Standing, walking, browsing, waiting in lines…Ugh, the very idea of it is dreadful. Yet, at the same time, I long to get just the right gift for everyone on my list, so I look for alternatives. Those motorized carts are so big and clumsy, and the last time I used one, it died in the middle of an aisle, at the farthest point possible from the door of the big box store I was in! Online shopping is less than ideal, as you can’t touch and turn the item in your hands. It’s hard to know how most things really look. Colors are often not true, and dimensions of things are hard to visualize. Gift cards are an option, but they seem so impersonal. It seems there is just no substitute for the painful process of actually getting out there and shopping, if you really want the “perfect” gift.

If you struggle with chronic pain and mobility issues, I’m sure you can relate, and you could probably add your own unique challenges to my list. So, my suffering sisters, what do we do with the holiday shopping dilemma? I hope you’re not like I was yesterday, feeling frustrated about the whole thing, snapping at my husband and generally being super grumpy (yes, I repented). I want to enjoy the holidays, don’t you? I want to focus on time with family and friends, not schlepping around the mall or sitting in front of the computer for hours. If this is going to happen, we are going to have to change our approach.

What is Christmas really about? Is it about gifts? Well, sort of. It’s about one gift—the gift of Jesus Christ coming into the world to save sinners like you and me. How is shopping necessary to celebrate that truth? It’s not. So why do we get so worked up over it? Is it because we want to express love to our families? We can do that without killing ourselves searching for the perfect gift. It’s OK to get a gift card, or to buy something online without knowing every detail about it. Girls, if we are going to enjoy the holiday, we are going to have to give up our insistence on things being like they used to be, or like we’d like them to be.

The fact is, the Lord has ordained this pain and/or disability for our good and His glory. If we keep struggling against the fact that “real” Christmas shopping is just too much for us now, then we will end up like I was yesterday, grumpy and discontented. We will need to die to ourselves if we are to truly represent Christ this year. Let’s give up this annual wrestling match, and enjoy the peace that this season embodies. The best way to let someone know you care is to love and encourage them all through the year, not to find the perfect gift for a single day.

It is not the gift that matters, but the relationship between the giver and the recipient. You can nurture that relationship without taking a single step into a store, or standing in any lines. Throughout the year, you can offer words of encouragement, a phone call to check in, a text of Scripture, daily prayer, and a thousand other things that will say to that person, “I love you and I truly care about you.” Then, when December rolls around, perhaps the gift-giving pressure will be off. Maybe you do these things already. If so, that’s great! What are you sweating about? Your friends and family know that you love them, and they know about your limitations. The last thing they would want is for you to put pressure on yourself for their sake.

Let’s do things differently this year. Let’s refuse to pressure ourselves about the gift-giving, and remember that God knows our weaknesses, and is able to give us the strength that we need—maybe not as much as we want—but all  that we need. Let’s trust Him to bless our Christmas in His way, by His grace. After all, this season only exists because of His birth. Who are we to say it has to meet certain expectations? No, we must repent of wanting things our way, and rejoice that He has already provided all we really need. Rather than becoming obsessed with the perfect gift, we must focus on the fact that we are perfected in Christ. Instead of standing in lines, we will stand on His promises. Cyber Monday can become a Sabbath, if we will only rest in His grace. Hallelujah! What a gift! What a Savior!