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 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 Five: The Patient and the Caregiver

(You can read Part 4 here.)

Stem cell transplant has its own calendar. The days leading up to transplant are minus days. We referred to the 5 days before transplant as T minus 5, T minus 4, T minus 3, etc. Transplant day is Day Zero. The first day after transplant is day Plus 1, etc. John did well until Day Plus 3, when they had to start another round of chemo. This is a routine part of the procedure, which is a preventive measure against Cytokine Release Syndrome. I never really understood all the details about why more chemo was necessary at this point, but I definitely saw the awful effects of it. John had a really rough few days with nausea, chills, fever, and extreme fatigue. It took him till about Day Plus 10 to fully recover from that round of chemo, and once he did, he began to really improve. So much so, in fact, that he was released from the hospital much more quickly than expected. The doctors sent us home just two weeks after transplant!

Surprise! You're Going Home!
This was a huge surprise to me, as I had not done everything I needed to do to prepare for his homecoming. I'd like to back up a minute and share with you what is required of a caregiver in this situation. When we first learned John would need a transplant, we were sent to a class to learn what it would be like. While you can never quite get the full picture of it until you live it, this was at least some basic instruction on how to keep the patient alive after transplant. (I say this somewhat tongue-in-cheek, but we did see several instances with other patients where failing to keep to the standards we were taught that day resulted in disaster.)

The first and most important instruction: KEEP YOUR HOUSE CLEAN! Specifically, John had to have his own bathroom that no one else used, and it had to be thoroughly cleaned daily. The kitchen had to be thoroughly cleaned weekly, including cleaning out the microwave, sweeping and mopping the floor, cleaning cabinet fronts, disinfecting every handle in the room, and wiping out the refrigerator. Other weekly chores included dusting every single surface, including all the ceiling fans (we have one in every room of the house), sweeping and mopping the hardwood floors throughout the house, and wiping down all of the leather furniture.

On a more personal level, his toothbrush had to be replaced every week, he needed a clean washcloth and towel every day, and his skin--which was very dry and delicate after radiation and chemo--had to be slathered with moisturizing lotion and checked for signs of GVHD daily. His bedding (He had to have his own bed) had to be changed every other day.

"His Life Depends on You"
The second category of learning at that class was about food. They made it clear that if he ate anything that did not meet the criteria they presented, he could become very ill or even die. All fresh produce had to be washed thoroughly before serving. They gave us a chart showing the temperature all the cooked food had to reach before serving, and advised us not to take any meals offered by friends or family, since there is no way to know what standard of cleanliness is observed in their homes, and whether this protocol would be followed or not. He was not allowed to have any takeout food or anything already prepared from any store or restaurant. Coincidentally, as it happened, he had no appetite anyway, and pretty much subsisted on noodles, dry toast, and oatmeal for the first few weeks.

In addition to all the work of caring for him, we had to go to the Bone Marrow Transplant clinic daily for the first two weeks, to check blood work and receive IV magnesium, which apparently is low in transplant patients for the first few months. John was taking a powerful anti-rejection medication, along with an antiviral and an antifungal, any or all of which could cause problems for him, so those levels had to be checked daily at first. He was taking about 32 pills at the time (which I painstakingly sorted and put in a giant pill tray once a week--probably my most anxious task since this was yet another life-or death responsibility), and all had to be processed by an already weakened set of organs. For that reason and others, blood and chemistry had to be checked daily.

If you've read this far, you can see that the responsibilities of the caregiver in a transplant case could potentially be overwhelming. Add to that the emotional stress of watching your loved one suffer and all of the unknowns and what-ifs, and you get a pretty clear picture of what I was going through. You might think that I collapsed into a puddle at the end of the day, and some of those days, you would be right. But the Lord was working in mighty and miraculous ways, and He sustained me through it all. Today I wanted you to understand the practical side of things. Next time, I'll share with you how the Lord worked through His Word, His people, and His Spirit, showing His power and love in ways that deepened my faith, gave me courage, and strengthened my heart. What Savior, what a Friend He is!

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.

Our Cancer Journey, Part Three: The Search For a Donor

(You can read Part Two here.)

By the time John was released from the hospital, the doctors had determined that he would definitely need a bone marrow transplant in order to remain in remission. The trouble was, no donor could be found. All of his siblings were tested, and none were a match. Of over 33 million registered donors in the Be The Match database, not one was even close to a match for John. Though we were trusting God for the outcome here, I will confess that I was pretty scared we wouldn't find one.

Will We Find a Match?
After celebrating Father's Day in the hospital, we checked out just a week or so later, just in time for John's birthday. We were so happy to be home, yet there was this dark cloud hanging over our head--No donors available. After genetic testing, the doctors had discovered that John had a rare genetic mutation that may or may not have caused his leukemia. When all other sources were exhausted, they looked to our two boys for the donation, since they each would for sure be at least a half match, as half the genes they carry are John's and half are mine. So we put out the call to the church to begin praying that one of them would be a match. The day after his release, we met with the geneticist.

I will never forget that meeting. Here we were, the whole family around the table with a man we'd never met who would pretty much be the decider (at least in an earthly sense) of our future. It was kind of surreal, sitting there watching my boys spit into tubes and praying that one of them would be a match. I looked at my husband beside me, thin and pale, and found it very hard to imagine that these two tubes of spit were going to determine whether I would receive him back whole or not. While I know that God is sovereign, and that He already knew the outcome, I have to be honest and tell you that I was not thinking that way in the moment. There was a sense that this couldn't possibly be our lives now, and that I was somehow outside of this scene, looking in.

So Many What-Ifs
There were other necessary factors besides the genetic match. The central one was that the matching son not have the same genetic mutation, just in case it was indeed a factor in the disease. So, not only did one of them have to match, but also the matching one had to be free of the mutation. The odds here seemed slim, and all kinds of scenarios went through my head. I had a million questions: What if neither of them match? What if they both have the mutation? Will we use one of them anyway? Is there a way to alter the mutation? (They're doing all kinds of stuff with genes now, so why couldn't this be a thing?) What will we do if no match is found? There were a million such "what if" questions running through my brain. And it would be forever (two weeks) before we would have the answers.

Those two weeks were the slowest in the history of the world. Though we tried to enjoy our time together, it was through a fog of uncertainty and fear that we passed our days. I remember one day in particular. We were at the lake, which is sort of our "happy place," just watching the sailboats and enjoying the beautiful scenery. At one point, John turned to me and said, "What if it doesn't work? What if we go through all this, and it doesn't work? What if I'm not here?" I know this had been a question in my mind for weeks, but I had not verbalized it. In a way, I was glad that he did. We both cried and just held each other. This was a much needed release for both of us, and really the first time we had shared any kind of grief or emotion regarding his illness. It was a deeply sorrowful moment, but it had a healing and unifying effect on us. After all these weeks of parallel perseverance, this moment of shared lament was a gift.

So many questions, and so little control of anything that was happening. But God is faithful, and He continued to show Himself so in the weeks to come.

Our Cancer Journey, Part Two: He will Hold Us Fast

Last time, I shared about the whirlwind that began with John's diagnosis, and I touched briefly on the faithfulness of God in those early days. I'd like to share more today about God's faithfulness to us, and how he used those 28 days of John's initial treatment in each of us, and in our marriage.

Separate but Together in the Lord
First, I have to say that John and I handled this crisis in very different ways. John is a rock solid, fearless man, at least in my eyes. He has always been a place of safety for me, and I have never worried that he would be unfaithful in any way, or that I would ever be in any danger with him. He is always the calm to my storm, and with few exceptions has never given in to fear or panic. Now, think of the opposite of that, and you have me. I have bounced back and forth between anxiety and depression for as long as I can remember. Led by my emotions, my life was a crazy coaster before salvation, and since I've been saved, it's more like a game of whack-a-mole: I gain victory over fear in one situation, and it pops back up in another one. Clearly these weren't victories, but cease-fires. More on that later.

Being wired so differently had an impact on how we handled this season. John simply put his head down, did what the doctors said, and kept silent. I didn't want to express my fears and sorrow to him, because he needed me to be positive and strong. This was a first for us. This role of the "strong one" was foreign to me and I had no idea how to fill it. Not only that, but my strong protector and place of safety was sick, weak, and unable to provide refuge for me. I began to see that I had been looking to my husband for things only God can give. I was grateful that the Lord allowed me to see this, and I wrote many lines in my journal confessing and repenting of it. We each got through it in our own way, sort of separate but together, as God held us both close to His heart. 

Deep Pain, Abundant Mercies
Those days were bittersweet. We spent more time together than we had in years, yet the reason for our togetherness was dark and heavy. The nurses wanted him to walk the halls several times a day, so we walked together, mostly quiet except for the squeaky wheels of the IV pole that always accompanied us. At the end of the day, we would do one last trip, ending at the door to the air locked unit, where we would kiss goodbye. He would walk alone back to his room, and I would walk alone out into the winding maze of the concrete parking structure, to find my car and drive home. There were few nights I didn't cry as I left. Nothing has ever been as heartbreaking to me as looking back at my poor sweet hubby standing in the hallway in a hospital gown, waving good bye. Most nights, I continued to cry, releasing all the tears I'd held back that day, as I made the 30-minute drive home. I know the Lord was protecting me, because there was no stopping the tears and I made the drive safely every night.

Looking back, I am so grateful for all that the Lord did in my heart and mind during that time. There were no lightning bolts or visions but all along the way, he did small but important things to soften the blow of this illness. John's employer (of just 3 months at the time) was very supportive, and there was never any concern that we would lose our insurance or that he wouldn't have a job when this was all over. There were many days that the Lord miraculously provided a parking space for me in the very crowded parking structure that was always under construction. The bathroom on the unit was off limits to family members, so there was a long walk to the nearest restroom. At first I was afraid this would be too much for my knee, but I never had a moment of pain in the walking, and it really turned out to be a blessing. There were many times I needed that walk to get control of my emotions so I wouldn't cry in front of John. God continually showed Himself faithful in these ways and many more.

When those first 28 days were over, John was declared "in remission" and we were sent home. But the journey was far from over. We had many days of testing and other treatments ahead of us, and also the continued search for a donor. Next time, I'll share with you how God shepherded us through those difficult and fearful steps. 

p.s. I'd like to share with you a book that we read at the time that was very helpful. If you're going through a long, difficult trial, I highly recommend Red Sea Rules.

New Pain, New Gain

Do you suffer from some type of chronic pain or disability?  If so, then you know that fearful sense of dread and doom when a new pain or weakness arises. Perhaps you’ve gotten used to your “new normal,” whatever that may be, and you’ve come to accept—maybe even embrace—your limitations. But then, seemingly out of nowhere, some new pain arises, and you go into a panic.

I don’t know about you, but for me, it would go something like this: “Oh, no! Now what? Did I do something to myself? (At this point I’m wracking my brain for how I may have overdone it at some point recently.) Is this a further progression of my condition? Is this something new, separate from what I’m already dealing with? What new medication or therapy will this require, and how will I fit that into my schedule and budget?” As I’m going through all these questions in my mind, my emotions are revving up, and if I don’t get a handle on them, this will become a genuine panic!

Before I even know what I’m dealing with, I can let my emotions take over. When that happens, whatever twinge inspired the whole thing has become genuine pain because I have become so focused on it. Thankfully, by the grace of God, it has been a long time since new pain inspired such a vortex of emotion for me. God has given me many opportunities to grow in this area, so today I’ll share with you three things that may be helpful to you the next time some new physical affliction surprises you.

Don’t be caught off guard.

That very surprise is the first thing you must guard against. Even those who do not suffer chronic pain must always be prepared for the physical degeneration of their bodies. After all, we are all aging, and, as Paul says in 2 Corinthians 4:18 (AMP), “progressively decaying and wasting away.” So, why are we surprised when something goes wrong with our bodies? Are we especially entitled to have no further pain or physical suffering, just because we already have a lot of it every day?

No, my dear sisters, we are not. Our chronic condition does not win us any special privileges when it comes to the decay of our bodies, so we should expect that these new pains will crop up from time to time. You will be pleasantly surprised at the reduction in fear and anxiety that is produced just by taking out the element of surprise. When you are prepared in your heart for the eventuality of more pain, it loses its power to frighten you.

Set your mind on things above.

Did you know that, according to Colossians 3, you have already died? If so, then what are you fearing right now? Think about it: Deep under the soil of panic over a health issue is that root fear of death. Yes, there are surface fears of medical interventions, increased pain, and decreased capabilities. But underneath those things is a common-to-man fear that inspires them all.  Christ came to take away that fear. Colossians 3 tells us that, as far as this world is concerned, we have died and our new, real life is hidden with Christ in God.

So why do we act as though we are still in bondage to that fear of death? I believe it is because we do not follow the instructions of Colossians 3. We don’t set our minds on things above. We have our mind firmly fixed on just one thing on earth: Our comfort. We forget that, because we have already “died,” we can now live our real life, which is hidden with Christ in God. We have put on the new man, who is renewed in knowledge according to God’s image. We must train ourselves to put off fear and anxiety, and put on that new man, who knows that death is no longer a threat, and God can be trusted.

Get on with life.

As we set our minds on things above, we will be focused on bringing glory to God in our response to this new pain. Instead of focusing on symptoms and relief, we can look outside of ourselves, and into a world where there is pain and sorrow on a level that, by the grace of God, we will never know. How can we sit and stew over some new pain, when others are hurting so much more than we? This is the only time I would ever advise you to compare yourself to others. No matter how much you hurt, there is someone who hurts more. There is someone who has fewer resources than you with which to address her pain. There is someone who has less help; more responsibilities; and more limited mobility.

Begin today to train your heart and mind to fix your eyes on things above, not on things of the earth. Every new pain presents an opportunity to choose: Either you will trust in God, or you will trust in yourself. You cannot do both. God is far more faithful, trustworthy, and good than you or I could ever hope to be. Let’s be prepared. Let’s remember that our bodies will age, and let’s expect new issues from time to time. We can exercise proper care of our bodies, investigating the cause of new pain, but let’s take the fear out of it! The God of the universe, who created your body and knows it better than you ever will, is fully able to lead you through the process.

If you’re still having trouble trusting God, take a look at this video, where my friend Joni, who has been in a wheelchair now for 50 years, will give you some encouragement!