When my husband Ken was first diagnosed and treated for acute myeloid leukemia (AML) it felt like we were trapped in a fierce storm and being tossed about in a fury of wind. My husband Ken was diagnosed with AML and received intense treatment, spending a total of 120 days in the hospital in 2019, culminating in a bone marrow transplant (BMT). We are so grateful that his only sibling was a viable match as many patients struggle for years searching for a donor. We’re also grateful that the transplant went smoothly, ridding Ken of the cancer as his body accommodated his brother’s stem cells and even changed his blood type. The “curative” transplant is not the end of the story however. In many ways it is just the beginning. Unlike many other illnesses and treatments which can have a definite end date and cease to be a part of daily life, allowing the patient to transition back to life as it was previously, transplant issues and complexities become a new normal, a chronic struggle to balance things that previously balanced themselves. We hope for shalom (“peace, order”) within Ken’s body as his new immune system wages war against parts of his old body causing new medical challenges.
After surviving the treatment and obliterating the leukemia, we now find ourselves looking around after the storm and feeling like we are in a strange land (like Oz). The intensity of the storm is over, we have landed on the ground after the free fall from the cliff, but now we face a new life of chronic pain and struggles. Daily challenges like finding adequate healthcare coverage, paying for the prescriptions and appointment copays, keeping up with the myriad of medications (immunosuppressants, supplements, etc.), managing side effects from the past treatments or the current medications, and pursuing therapies for the new issues that he faces because of his graft versus host disease (GvHD, when his two DNAs war against each other resulting in painful and frustrating symptoms) can leave us exhausted and drained.
Each GvHD patient is unique so there is no clear path after stem cell transplant. For Ken, the two most bothersome chronic issues are his eyes (disabled tear glands, impaired vision, dryness, burning, and sensitivities to light and preservatives) and muscle spasms that are exacerbated whenever he does physical work of any kind and that often prevent him from sleeping (which makes his eye challenges even worse with lack of sleep). With his work as a professor, he uses his eyes constantly for reading and grading and he has tried many different treatments for relief, including eye serum made from his own blood, tear duct plug implants, and scleral contact lenses, without any improvement. The muscle cramps happen regularly all over his body but they intensify whenever Ken does any kind of exercise or simply starts to relax. It has been so painful to watch this once strong and able bodied man writhe in pain while trying to do the simplest of household tasks (like unclogging drains or reaching or kneeling for something) or to chew his food without debilitating jaw spasms. Ken loved things like deep sea fishing and hiking, and now both of those activities cause him tremendous pain. Thankfully Ken’s job doesn’t require any manual labor and he is able to sit for long stretches and grade or read (assuming his eyes cooperate).
Again, each patient faces unique challenges. Ken has joined a helpful nationwide Zoom support group for BMT (bone marrow transplant) survivors, and they all have similar but different stories to tell. They all struggle now with chronic issues and pain, but they range from GvHD of the liver, skin, lungs, GI tract, etc., so they share what they’ve tried and how it’s worked (or not worked), and they encourage one another. Because of the range of symptoms and treatments, I believe that the caregiving experience is customized for each situation. But there are probably a few elements that are common to all of the caregivers in this scenario.
What does caregiving look like for me? At this point Ken is able to keep up with his doctor’s appointments and medications which is a huge responsibility that many caregivers need to manage. He still has many appointments with a myriad of doctors who specialize in everything from neurology to endocrinology to address his current medical concerns which are stemming from his life-saving bone marrow transplant.
There is a constant underlying fear of recurrence of the leukemia or of intensification of the chronic issues to the point that Ken would no longer be able to do the incredible life-giving work that he does as he uses his extensive knowledge and PhD training to train and educate the next generation. This, of course, would create a financial catastrophe for our family, as well as be devastating for Ken to give up one of the greatest joys in his life--teaching and mentoring students. The instability of the present and the future is something that caregivers have to wrestle with.
The frustration of the endless abyss of the situation and the helplessness and sadness of watching someone you love dearly struggle so deeply every single day is a commonality among caregivers of BMT patients. I remember a bulletin board in the hospital where he was transplanted that said, “Every day may not be a good day, but there is good in every day.” We find this to be true and try to focus on the good in every day, seeing each added day on earth as a gift to be enjoyed.
I imagine most caregivers, like myself, feel an immense fatigue over the constant alert and pressure of the situation and even over the way that the medical challenges dominate our personal thoughts and conversations with others. Unlike other health challenges that have a definitive end, the chronic issues after a stem cell transplant continue. We have to intentionally schedule breaks and fun things to look forward to so that our lives don’t become overtaken by the challenges and resulting fatigue.
We have always enjoyed entertaining and having students, colleagues, and friends at our home. Ken is easily fatigued by being on his feet or around people too much so we have to think through our scheduling in a new way, making sure not to overload him with too much activity. Also, because he tires so easily, I feel the impetus to handle whatever I can to avoid burdening him further. This has meant an increase in my own responsibilities so that I can free him up to do what only he can do (teaching and interacting with students). I don’t do this grudgingly because I want so badly for him to continue to do the work he loves. But it has increased the level of exhaustion that I feel on a regular basis and has made it difficult for me to be inactive because I feel like there is always something that needs doing and I don’t want Ken to have to do it.
We have a wonderful supportive community who walked with us through our cancer journey. Now that the cancer is gone, most of our friends assume that Ken is back to “normal.” He looks better and is not in such a desperate situation as he was, but they don’t realize the physical limitations that he now has and what his “new normal” feels like. They don’t understand the chronic pain aspect of this phase and are frustrated that Ken’s health hasn’t been restored completely. As a caregiver, I find myself running interference for Ken, trying to explain what he is going through and how it is affecting his day-to-day existence, why he can’t do everything that everyone wants him to do and how he simply cannot do physically intense work at all. Many well meaning people try to solve his current medical problems with “helpful” suggestions, seemingly believing that the remedy for his medical challenges must be something that we or the doctors haven’t thought of. While we appreciate the good intentions of our dear friends and family, it is exhausting to be constantly referred to new possibilities or told of things that we’ve already tried unsuccessfully.
At the end of all of this, we have come to accept Ken’s new limitations. Like so many other people throughout history who have had to face overwhelming challenges but have emerged stronger and tougher for it, we try to do the same by staying positive and holding tightly to our faith and our community of amazing friends and family.
We have found comfort in the apostle Paul’s struggles (2 Corinthians 12:8-10) with his “thorn in the flesh,” how he begged God repeatedly to take it away, but how God promised him that His grace would be sufficient, and His power made perfect in weakness. Like Paul, we hold on to God’s purpose for weakness, even when we don’t know or understand it, so that Christ’s power may rest on us. For Christ’s sake, we strive to delight in weaknesses and in limitations, knowing that when we are weak, then we are strong.
This lesson is just as true for me as the caregiver as it is for Ken as the patient. When I fall short and lose my patience or get frustrated or exhausted with the circumstances we are in, God’s strength is there. When I feel overwhelmed with the fear of recurrence or sadness over the severity of the chronic pain Ken experiences, God’s strength is unwavering. When I feel helpless or fatigued because of the added responsibilities, God’s strength is abundant. When I am running interference and explaining to the hundredth person the list of current maladies and attempted remedies that we are currently dealing with, God’s strength provides the grace and patience that I lack.
If you are a caregiver, do your best not to feel guilty about anything you did or didn’t do. Perfection is not required or even possible in a caregiving situation. Weakness can be an opportunity to further lean on God and others for the help you need. It’s helpful to remember that there is no one “right way” to provide care for someone. In order to live as well as possible with a serious condition, decisions about caregiving must be personalized so finding an approach that suits your family and situation is the best way to handle each circumstance, even with the knowledge that the approach may need to be changed or tweaked as time goes on.
Caregiving is stressful, whether provided by family and friends or professionals so it’s essential to take breaks, recharge, and make sure to take care of yourself. A burned-out caregiver means that now two people need help so do your best to know your limits and get more help or support when needed. Caregiving is a marathon, not a sprint, so take each day as it comes (maybe even each moment) and try to enjoy the good in each day.
Lori
Caregiver
