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 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 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!