The Council of Faith Church was very generous in giving me the time away so that I could be Claire’s care-giver. You have been getting updates on how Claire was doing while we traveled through the swamp of Claire’s cancer but I want to share some insights I learned as Claire’s care-giver in this whole process. Here are some of my reflections and things that I learned from this over the past 3 months.
What I thought it would be like:
I was told that my job was to be “cook, cleaner and chauffeur.” When I first heard that, after I pondered on this for a bit, I realized that I could handle those tasks. My biggest concern going in was making sure I kept the cleaning up and so devised a schedule for cleaning a room a day to stay on top of it. The meals would be no problem since I had a great support team at church providing meals for me and I would be able to prepare small simple meals for Claire. The transportation seemed to be the easiest to do. I assumed that I would be driving back and forth to the hospital for quick visits and treatments. Then we would be home where I would be doing lots of reading and working while Claire rested. I told the Council that I was anticipating this to be a like a mini-sabbatical and I packed many books home so that I wouldn’t run out of books to read. I was eager to get caught up on the books that I’ve been intending to read so that I could come back rested and renewed for ongoing ministry.
What it turned out to be like:
I was the cook and that was pretty much what I expected. The meals that people from church provided were wonderful!!! I ate really, really well and preparing Claire’s meals was fairly easy to do since her appetite was not good and quite limited. For cleaning I kept to my schedule to clean a room a day and for the most part I did stay on top of it. There were times when Claire was the most sick that cleaning and laundry became a very demanding job, but I was always glad to do it for her. I was chauffeur but that was more demanding than what I thought due to the almost daily visits. Over the 7 weeks, we had maybe 5 days off in all where we didn’t have to be at the hospital and in one 30 day stretch, only 2 days away, including the weekends. And then we soon learned that the “quick” visits ended up being at minimum 4-5 hours, sometimes 7-8 depending on what Claire needed on that particular day. The quiet times at home were not very often except the evenings but by then we were often so tired that we would go to bed at 8 o’clock to get up for early appointments the next day. Twice we ended up in the hospital and I stayed with Claire there as well to make sure she was steady on her feet especially when her blood pressure was so low and she was passing out in the night. Anyone who has stayed in the hospital knows that nights are not the time for sleeping in the hospital. The job of being Claire’s caregiver was far more demanding and intensive than either of us imagined, but I would do it again in a heartbeat in order to take care of her.
What I learned:
We learned about the strength of our marriage. This was far, far more demanding than what I anticipated but we also learned more about each other and learned to lean on each other. On our last visit to the transplant clinic the nurse observed that we made a really good team. We learned how to be married in a way that we never had to do before and will be prepared to do again if we need to.
We learned about trusting in God. There were times when the schedule that the doctors had in mind or that we wanted wasn’t going according to plan. We knew that God had us and that God had everything in his hands. We simply had to trust in him and his timing. As some of you know, I like to have things scheduled and planned. This couldn’t be the case during all of this and we learned to rest in him. Often I would hear Claire humming the song, “Jesus, I am resting, resting in the joy of what thou art.” We learned to rest in him through all of this in the mundane, the scary, the unpredictable, the tedium and the waiting.
We learned about humility. I knew in my head that we are not in control of our lives. I know that God is in control of our lives, but we learned that in this process we were also not in charge of our lives due to the medical scheduling and treatments. The staff set our schedule and told us where to be and when. We were not in control, but we reminded ourselves that while we weren’t in control, God was.
We learned gratitude. The way we have been supported and upheld in prayer by everyone in Faith Church was amazing! We were reminded by the dozens and dozens of cards that we received over the past weeks. We were reminded when Claire put on the pajamas or we changed the sheets or when she wore the clothes that were purchased for us. We were reminded when we used the special care basket items from the church; things that we didn’t know that we would need but someone did. We were reminded when Claire got her wig and when we watched movies and programs from the Netflix someone bought for us. We were reminded of that every time I ate one of the delicious meals that were provided or when we looked outside and saw the beautiful flower beds that the women worked on so that Claire could enjoy the flowers. Others from Claire’s work arranged to have someone cut my grass so that I wouldn’t have to deal with that in addition to everything else. We are touched by everyone’s thoughtfulness and care. And we have seen God’s merciful and loving arms, hands and feet shown so beautifully through our brothers and sisters.
We learned compassion and lack of compassion: We saw and felt the amazing compassion of the medical team at Vanderbilt. They too were the arms and hands of our Lord as they cared for us in so many ways. We also experienced awkwardness from others when we walked through the hospital corridors. When they saw Claire’s bald head with a head covering and her wearing a mask, some glanced and looked away and others looked with pity. But some smiled and greeted us warmly and that made us feel like we weren’t somehow unclean. We experienced so much love and compassion in so many ways and for all of those expressions we are so thankful to God.
What you can do for others who may be in similar situations:
Let me make it very clear that our church was amazingly supportive. My summarizing things here is not by any means an encouragement to do things differently but to affirm what was already done.
1. Show care through visible and tangible support. Meals, clothes, supplies are all powerful expressions of care and love. It’s very real and very much appreciated.
2. Remember that while cancer is scary and awkward, it’s not contagious. Hug (if not a stem cell patient) and smile and laugh.
3. Pray without ceasing and let them know you are praying for them.
4. Send funny cards or notes. Laughter is wonderful medicine! We loved laughing in spite of what we were going through!
5. Don’t be afraid to ask questions. If someone doesn’t want to talk, they won’t. But sometimes they may want to be able to tell their stories because it helps them process what they have experienced.
From the Patient
Dear Faith Church family,
Thank you so much for allowing Jerry to have time off to take care of me! I had no idea that it would be such a time consuming task, nor that I would be the kind of patient who would wear my dear care giver out!
I cannot imagine going through the chemotherapy and side effects, or transplant itself, without Jerry by my side, encouraging me and caring for my needs. He had originally thought that he would have much time to study and read, almost as if he was on a sabbatical. But we soon discovered that the days following the transplant consisted of many hours spent daily at the Vanderbilt Cancer clinic - a wonderful, but exhausting, blessing.
Today, I have passed Day 30 of recovery and I am amazed as I look back over all that God has brought us through. The transplant involved side effects that are not pleasant to talk about, much less go through. But go through them we did. God carried us through the longest, most tiring days, and He continues to go before us now as we begin this next stage of continued healing and maintenance.
We also now face a new challenge connected with the Multiple Myeloma, severe low blood pressure, for which the side effect is passing out at random times of day or night. Health concerns are rarely expected, and that was true for this issue as well. But we are constantly reminded not to give in to discouragement and fear about the future, because god is already there before us, guiding us and providing for us.
I cannot complete this note without thanking you again for the amazing support that you have given us through these months! Your prayers have lifted us up, your cards have encouraged our days, your meals have nourished us, the gifts of care have blessed us, and your flower gardening has been an absolutely delight! Thank you for being the hands and feet of Christ and blessing us so abundantly.
In Christ’s Love,