Our Cancer Journey: Epilogue

If you're new here, and would like to read about the rest of our journey through Leukemia, you can start here. 

We have finally made it to the two-year mark! John’s 2-year biopsy showed 100% donor cells, and no Leukemia! We are so grateful to the Lord for these last two years, both for the return of physical health, and for the growth in the Lord that we’ve both experienced. If a picture paints a thousand words, then a video paints a million! Here’s John, ringing the gong for the Two-Year All-Clear!

 

Our Cancer Journey, Part 12: Where We Go From Here

This is the final installment of a 12-part post, sharing our leukemia journey. If you're just joining us, you can start at Part One here.

The Right Timing

It has brought me great joy to write out our leukemia journey. It was a long time coming! Honestly, I’ve known for a while that I wanted to write about it, but I think it was just still too real, too raw, for me to be able to write objectively about what happened. Of course, all experience is subjective, but I think the perspective I developed in waiting til now before writing about it was helpful. I hope you have found it encouraging, and I hope you’ll pass it along, maybe to someone who is going through something similar, for their encouragement.

As I write this, my dear leukemia-surviving husband is suffering with Influenza B, and is quite miserable. Even just a few months ago, I think this illness would have sent me into a terrified panic attack. I can imagine all the what-if’s I’d be running through: What if his immune system can’t handle it? What if he develops pneumonia? What if I come down with it—who will take care of him? But, much to my joy, I had none of these thoughts. The Lord has been so faithful in caring for us throughout this entire journey that my trust in Him has become quite sufficient to keep me calm and unafraid.

Different Wife, Different Life
I am not the same wife I was before my husband got a life-threatening illness. The trial brought on by this deadly, aggressive cancer has taught me a lot about my faith and the God in whom I have placed it; and I thought I had been through some pretty tough stuff already! Surely my battle with chronic pain and all the limitations that come with it would have humbled me, would have deepened my faith and matured me. That is true, but this trial of seeing someone you love—on whom you have depended for most of your adult life—fall  victim to an aggressive, deadly disease? Well that is a trial on a “whole ‘notha level,” as they say.  

John has always been my go-to friend; my buffer in difficult situations; my safe place to go when life is scary. Experiencing the most frightening thing in my life so far, without his strong shoulder to lean on, has taught me much about myself and about God. I’ve learned that in some ways and seasons, I have made an idol of my husband. In seeking comfort, solace, and protection in him, I have become unaccustomed to seeking it in God. Of course, our spouses are to be a source of all these things, but they should never be the primary source of any of them. I’ve learned through this leukemia journey that God is my refuge and strength, my very present help in trouble.   

John’s illness gave me the opportunity to learn this dependence on God through experience. Though the trials in my life had prepared me to some degree for this one, I don’t think there’s any way we are ever truly ready for such a challenge. The Lord had given me many opportunities to learn this dependence on him through previous trials, but I believe that in my self-sufficiency, I had come through most of them without really disciplining myself to depend on Him. This time though, there was no choice.

Learning Submission Through Love
I can’t tell you how many nights I sat on my back porch after coming home from the hospital and just cried out to God for his mercy and help. I cried for John’s pain and suffering, and I cried for my loneliness and fear. I cried for the possibility that I might never bring him home, and I cried for the loss of life as we’d known it, even if I did. Those were gut-wrenching nights, exhausting but humbling. In the end they left me softer, more willing to be shaped and molded by my Creator God, and more eager to submit to his loving will.

I’ve learned more about submission over this past year and a half than at any other time in my Christian life. But what’s taught me about submission wasn’t the practice I got in submitting. It was the overwhelming, awe-inspiring, all-encompassing love of God. He showed me in countless ways throughout this awful ordeal how much he loved me. He comforted me in my pain; answered my husband’s prayers in ways that deepened his faith; provided for my every need, and heard my pitiful cries. But most of all, he came alongside me and walked me through it. This is the simple, beautiful, perfect love of God: He is near.

I sensed God’s presence with me in ways I had never experienced before. But the wonderful thing is that this closeness, this intimacy with the Lord has remained with me as this illness falls further into the rear view. My God is my own now. The God of the Bible, whom I studied diligently to know; the God of the counseling room, whose Word I studied to show myself a competent counselor; the God of the universe, who inspires awe and wonder every time I open my eyes: That God became my God over the course of these two years. A distant God I'd known intellectually became my sweet Friend and Counselor; my Abba; my Jesus.

What’s Next?
In just a few short months, Lord willing, we will have a final bone marrow biopsy, and the doctors will declare John “cured.” (There’s even a gong he gets to bang, and a certificate involved! I’ll pop back in here then with the update, and possibly a video of said gong-banging!)  The lessons I have learned on this journey will stick with me. I know this because those lessons were not self-taught or learned from others. They were seeds of assurance, planted by the One who can guarantee their growth and longevity. I’m not worried that I’ll lose this deep relationship we’ve developed, because I am not the one who sustains it. Jesus is the creator and sustainer of all things, including my relationship with him, and He will hold me fast. Hallelujah! What a Savior!

Our Cancer Journey, Part 11: Zooming In

Last time, I shared with you more of the ways God worked in our lives and in our hearts during the course of John’s treatment. He was so faithful and so good to us, I think I could probably get to “Part 100” of this blog series and still not list all the ways! Today, I’d like to narrow that bird’s eye view of God’s work in our process and share a bit about how our marriage was renewed along the way.

Answered Prayer

Like most Christian wives, I have prayed every day since our salvation for my husband’s spiritual growth. Neither of us knew the Lord when we met, and we were both saved after about 10 years of marriage. Being academically inclined, I dove in right away and learned all I could of the Scriptures and Christian doctrine. All along the way, I prayed that we both would have this desire to know our Creator better and when John got sick, I began to see the Lord taking hold of him as never before.

Though I was with John as much as I could be during his treatment, there was much of it that he had to endure alone. I was not present with him in the radiation machine, the many bone marrow biopsies, or the long nights of sick sleeplessness in the hospital. I believe these were the times the Lord’s presence encouraged and matured him.

“It Shouldn’t Work!”

There’s one story in particular that John loves to tell. After he developed a blood clot in the first picc line, they removed it and placed a temporary IV in his arm. It was only meant to be functional for a day or so, but they wanted to leave it in as long as it would function, just to postpone another insertion. The first day it worked just fine. The second day the nurse said, “It probably won’t work today, but we’ll give it a try.” It worked perfectly all day and night! The third day they said, “We probably will need to get this out today, but let’s check and see if it will work.” Again, no problems. The same thing happened the fourth day, as the techs kept saying, “This really shouldn’t still be working!” But each time they came to draw blood or hang meds, John was praying. He was so weary of the pain of his treatment, and he just wanted this one little blessing from the Lord, not to have to be stuck with needles yet again. He asked the Lord, before and during each attempt, to allow it to work one more time. God was gracious. He knew what John needed, and He generously provided.

Now this may not seem like a big deal, but for John it was just one of many faith-building providences. It deepened his love for the Lord and his trust in God's goodness. Not only were John’s prayers answered, but mine were too. My husband is a different man today than he was before he became ill. He is even more sensitive to my needs, more humble in our relationship, and quicker to see his own fault. These changes didn’t happen right away, but as time has passed and we’ve both gained perspective on what we’ve been through, we are seeing the changes the Lord has made in our relationship. There is a deeper connection than ever before between us, and between each of us and the Lord.

Grateful

If I had to choose one major change I’ve seen in our marriage as a result of John’s illness, I would say it is gratitude. Gratitude for each other, for our relationship, for our family. We don’t take each other for granted. We don’t get hung up on little things or petty differences, because we know something much more important: Life is fragile. The Lord gave us this marriage, and He can take it away at any time. We are both so thankful that He saw fit to let us keep our marriage, and to continue to grow in Him through it. We both love the Lord more deeply than before, and we treasure our relationship with Him and with each other.

And Even More Grateful

There was a couple we met one day at the clinic as we waited for our turn to see the doctor. Joe was the patient, and Jill was his caregiver. Though he had a different disease, Joe had had the same type of transplant as John, and after striking up a conversation we decided to exchange numbers and try to keep in touch. Jill was a sweet lady who texted me often and always had words of encouragement for me. I tried to encourage her too, though her husband suffered many more complications than mine and their journey was much more arduous. I was so grateful for her kindness and her interest in me and the challenges I faced. She was my “caregiver buddy” and her support was invaluable.

We kept in touch for over a year, and the last I’d heard her husband was doing well. One day, I texted to check in, and I received this reply: “Joe passed away last week. We buried him yesterday.” I can’t describe to you the shock and sorrow I felt upon reading that. In her last text, she'd said they were headed on a trip to visit family, and things were looking really positive. This news hit me hard. I struggled with whether to reach out to her, trying to put myself in her place. Having just lost her husband, would she want to hear from me? I did respond to her text, but never heard back from her. My heart still aches when I think about it, and John and I still pray for her nearly every night. This was another providential event that deepened my gratitude to God and my love for my husband.

My dear reading friend, who in your life do you treasure? Who do you love and value? Who has God blessed you with in your life? I’d like to urge you right now to tell that individual how much you love them, and how much of a blessing they are to you. Tell God how thankful you are for that person, and how grateful you are that He allowed you to have them in your life. We are not promised tomorrow, and none of us knows when the Lord will ordain the end of that relationship. Now is the time to reach out, both to God and to your loved ones, to express your love and gratitude.

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 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.