Tuesday, December 24, 2019

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!

Wednesday, December 18, 2019

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.





Tuesday, December 10, 2019

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.


Wednesday, December 4, 2019

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.
















Tuesday, December 3, 2019

Our Cancer Journey, Part One

It's been nearly two years since I posted anything on this blog. So much has happened, and I have grown a great deal in the Lord since my last post. In that post, I expressed my heart's desire for more of Christ, and I believe the Lord has fulfilled that through some difficult trials in the interim. My hope today is to share with you some of those trials, and to express in a way that is helpful to you, how the Lord has worked in my heart through them. Everything that has happened has had these things in common--disease, pain, fear, and God's faithfulness. I'm sure I won't get them all out in this one post, so my plan is to post something each week or so. We'll see if that's God's plan too...

I stopped writing this blog because I was writing pretty frequently for another blog, which was associated with the counseling center where I worked. That job became pretty much full time, and I eventually had no time to write at all, for anyone. I was counseling, directing the online training program for the Counseling Center, and was pretty much consumed with all things Biblical Counseling.

The End of Life as We Knew It
All that came to a screeching halt when my husband was diagnosed with Acute Myeloid Leukemia (AML) in May of 2018. This was devastating news that came through a phone call when I was in the middle of a Skype counseling session. I hung up with my counselee and left to join my husband at the doctor's office, where we were told that he must start immediate treatment. Within 24 hours, we were at the hospital and he was receiving chemo, while the doctors searched the registry for a stem cell transplant donor. AML is an aggressive form of blood cancer. They said they could probably get it into remission with chemo, but they were already pretty sure he would need a transplant for long term survival.

What followed is now a blur of hospital days: Calling relatives to tell them about the diagnosis; racing to make it in time for morning rounds at the hospital after circling endlessly to find a parking space; trying to encourage my husband by reading Psalms to him and just being there; hours of calls with  insurance reps and the transplant coordinator; long drives back and forth, during which I shed many tears and cries to the Lord.

The Battle: Fear vs Faith
Most of those cries were pleas that He would allow me to keep my husband. Throughout this time, I was terrified that John would die. I prayed and begged the Lord to let me keep him. John is truly my soul mate. We were married in Reno before we really even knew each other (long story) but even then, God knew that these two wretched, hell-bound sinners would one day come to know and serve Him. At the time of the diagnosis, we'd been married 32 years, and the thought that he might be taken from me by this disease was inconceivable to me. Yet as I watched him grow weaker and sicker over those weeks, I simply could not stop the fear from growing in my heart.

I would like to say that I immersed myself in the love of God, and was able to conquer the fear that plagued me. But that is not what happened. Each day at the hospital as he slept, I graded papers from the online students, read novels, or scrolled through social media. In the evenings, when I finally collapsed in my recliner after choking down some dinner and packing for the next day, I escaped my fears through Netflix or talking to friends on the phone. In the mornings, I read my Bible and prayed, often crying out to God for help. Yet, when I closed my Bible and walked away, I shifted to self-sufficiency/protection mode, and got in gear to go fight for my husband's life. I was certainly dependent on God, but I wasn't thinking that way. He was holding me up in ways I didn't even know at the time.

Creator, Sustainer
One thing God did during the whole course of this process was sustain me physically. If you've read the earlier posts to this blog, you know that I have a chronic pain condition caused by a bad knee replacement over ten years ago. Well, that knee held up under more walking than I have probably ever done since that surgery. I had very little pain, which was a great blessing because I had zero time for any treatments. The Lord supplied plenty of adrenaline and everything else I needed physically to keep me well and mostly pain free throughout the time of that first intensive treatment.

I'm going to stop here for now, because I don't want these posts to be too long. This is a pretty long story, but hang in there with me and come back, because I think you will be encouraged as you see the faithfulness of God throughout this journey. And (I'll just come right out and say this), these posts will benefit me too. I've struggled with a number of physical and emotional issues since John's apparent recovery (we'll know for sure if he's 'cured' in August of next year), and a number of wise counselors have advised me to write out our story. I figured I might as well do it here, in the hope that others will benefit. Thank you for reading thus far. I hope you will join me again soon for the next installment. 

Sunday, November 3, 2019

Power...To Suffer?

It is just a few days from the official start of winter here in the Midwest, but the Aches and Pains Index is already off the charts, and boy am I feeling it! The artificial knee that began my quest to be near to the Healer pushes me toward Him the hardest at this time of year. It aches and becomes very stiff as the barometric pressure goes up and down. The stiffness changes my gait, which leads to problems with the hip and low back on that side. The pain causes me to reduce the amount of strengthening exercises I can do, and as the muscles atrophy, the pain increases, in a cycle that doesn't end until Summer. I tell you all this not to complain, but to give you an idea as to the physical state that brought about this latest lesson from the Lord.

Providentially, this kind of weather accompanies a time of year when more is required of me physically than any other. Thanksgiving and Christmas in the US are right on top of each other, and both mean lots of time on my feet. Even with pre-made food and grocery pick-up, there is still plenty of cleaning and preparation to be done. Pain levels were particularly high this year for some reason, so I was thankful to be able to order our Thanksgiving meal from the grocery store we've used the last 4 years. Usually, the food is really good, but this year it was disappointing. As I looked over the meal the night before, I became more and more despondent about the fact that I am not able to prepare all of these traditional dishes myself. (Well, technically I suppose I could, but it would come at a great cost of pain, both during and for many days after.) Though I tried to keep bringing my sorrow to the Lord, I was not successful in putting it away.

On Thanksgiving morning, when I woke up and began preparing, I felt strong emotions again, but surprisingly, I was not sad. I was angry: Angry that my knee replacement was done wrong; angry that at my age, I cannot be on my feet long enough to prepare the meal; angry that I had to serve my family what I saw as sub-standard food on such a special day; angry at myself for still being so emotional after nearly 10 years--10 Thanksgivings--in this same condition. Shouldn't I be over this by now!?

But really, I was angry at God. A pastor once told me that all (unrighteous) anger is anger at God, because it is anger at His providence. The Lord ordained this botched knee replacement for His good reasons. What right did I have to be angry about it? I'm sure I've posted about this issue before, and many times I've thought I had submitted to His will regarding my mobility. Maybe I have, and this was just a temptation from Satan to renew my sense of injustice. I'm not sure what it was, but one thing was clear: That morning, I was not submitted to His will. I cried and prayed, and begged Him to grant me repentance from this anger. I think I ended up just being resigned to it that day. I put it aside and determined to enjoy my family.

Later though, when I sat down with God's Word, He showed me something I'd never seen before, in Colossians 1:11. This verse comes in the middle of a whole list of qualities for which Paul says he is praying for his readers. Among other things, he asks that they may be "...strengthened with all might according to His glorious power..." Now I've read this passage many times, and used it in counseling often. But that day He made it personal for me, and I gained a new understanding. I've often thought of the wonder of being strengthened with all might according to His glorious power. The kind of strength God can provide comes from the ultimate power that created and sustains the entire universe! Who wouldn't want that kind of power? But I've just sort of run with it from there, not paying much attention to the following clause: "for all patience and longsuffering with joy." What? Not power for helping others? Not power for physical strength? Not power for greater ministry? No. Paul is asking the Lord to strengthen his readers for patience and longsuffering.

Honestly, I want all the power, but I don't want to use it for longsuffering! I don't want to suffer at all, and when I do, I want it to be short, not long! But the Lord clearly was telling me (and you) that He gives us His power so that we can have patience in the trial: Patience to endure; patience to wait on His timing and trust Him; patience to accept, and even embrace, what we don't want. Most importantly, He wants to strengthen us to have the patience to find joy in the trial. For me, when something hurts, I want it to stop. I am very IMpatient with pain! In my childish mind, when I hurt, I think it will last forever. I find myself with a sense of entitlement to comfort, and that is where the anger really gets a foothold.

Our Father offers us His power so that we can be strengthened to be patient, longsuffering, and joyful. While His power does supply some to do great things, He showed me on that day that His power is what I need to become a patient sufferer. I could almost hear Him saying, "Be patient, child, by the strength I give you, and I will show you how I will be glorified in your pain." The 'great thing' I can do through God's strength is show the world that this naturally impatient, entitled, stubborn sinner can learn to be patient; to suffer long; and to find joy in the strength of her Savior.

Because of His faithfulness, I can fulfill my purpose--to glorify Him--simply by believing what He says and being patient. This pain is not eternal. One day, I will be with Him, and I will have no pain, no suffering, no more need for patience. But, until then, I can embody His strength and show the world His power just by suffering patiently. Hallelujah! What power! What a Savior!