(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!
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