This story is about the caregiving side of my life. It’s about the love of my life, too.
John and I married in 1974 when I was 19, and he was 30. In December 2015, John retired from our shared psychology practice. I decided to increase my practice to full-time, and left the nonprofit where I’d been chief psychologist for 23 years. It was a good move, and yet, if we’d known what was coming, we might not have made so many changes all at once.
I, at least, had considerable exposure to illness (my own and others’) from an early age, beginning in my high school years. Then, as a young adult, I’d had a curable cancer, as well as other cancer scares. And, I was the one the family called when my brother noticed that my mother wasn’t remembering things she used to always do well. Thinking it looked like my mother might have early Alzheimer’s and her husband had something like atypical parkinsonism, I organized long-term care insurance for them, and eventually arranged for their entry into a continuing care community where they were able to enjoy at least some elements of independent living. Like many people in the “sandwich generation”, starting in 1998, for ten years, I juggled coordinating my parents care and my work at Child Guidance, while our sons’ school years stretched respectively from 5th and 8th grades through college and some parts of grad school. So, it seemed to me that life had prepared me to understand – and to cope well with – health challenges.
But in 2015, when my husband was referred to an oncologist the week that he left our practice, it was a shock. How could my husband have cancer? Of course, it’s not about fairness, but the mind seeks logic and wants to look for things to blame. After all, he’s the one who exercises almost every day. He’s the one who has never been ill. He doesn’t drink or eat or laugh or cry too much. He takes vitamins, mini-aspirin, and cooks amazing food. He takes care of his brother. And instead of doing wild and crazy things in high school, he attended a seminary for goodness’ sake! How could he be sick? He didn’t feel ill. The referral to an oncologist arose because a routine blood test showed unexplained anemia.
At first, his web searches about blood and plasma cancers were terrifying. Neither of us could sleep. Thank goodness, our son who is studying health psychology taught John how to use an eyes-open style of meditation/resonant breathing, “Inner Balance”, which helped John to increase his ability to stay cool, to be focused and to think things through.
For a year of watch-and-wait, John was given the diagnosis of MGUS. When Kaiser sent his second bone marrow biopsy to an outside lab and they found the L265P MYD88 mutation, his formal diagnosis with WM was confirmed. Then he found IWMF’s website. The brilliant, kind people he connected with through IWMF, the articles he read, and all he learned persuaded him that while not everything is rosy for everyone with WM, most WM’ers can continue to focus on making, getting and giving the most that they can in life, as most needn’t have treatment very often. IWMF explained that “incurable” does not equate with devastation.
Yet, things aren’t the same as they were before.
Changes have been both for better AND for worse. We are in this for the long-haul and we are making our 42-year marriage the best that we can. And just as we create our lives as we go along in our marriage, because we are always growing and not always in sync, we also count on being able to figure it out as we go with WM.
One good change is that we are kinder to one-another, and we do a better job than before of waiting until we are at our best to sit down to talk gently about the important things.
One troublesome change for the worse is that when John needs to focus on his health habits and/or becomes apprehensive, he turns inward, which sometimes leaves me feeling excluded. If I adjust to that too well, he is liable to feel lonely.
Regarding the role of caregiver in general, every one of us has memories of how we were loved and cared for when we were young – each of us started life needing others to do almost everything for us. When someone we love is ill, if we grew up feeling understood, we try to help by offering that same understanding that we were given. And, even if that had not been our experience, we try to offer what we learned to do for ourselves. Learning from your loved one what he or she wants is the challenging part.
Having the opportunity to write about our experiences so far, however, has been very helpful. For instance, composing the first rough draft of this story gave rise to some good discussions between John and me. Here are some key takeaways that we found:
- It is important to be aware of what your strengths are.
- There are several phases to this adventure.
- No two people are the same, so it helps to ask what your loved one wants.
You know how one person in a marriage tends to bring in friends and the other might be better with numbers and at keeping an eye on the bottom line? Of the two of us, I’m the one who was never embarrassed to raise my hand to make sure I understood what a teacher meant to say. And, as an adult I’m not afraid of asking doctors to reconsider different points of view, either. I like learning about health issues, and I’ve found that turning to others has helped a lot. I think of myself as part of a team. John was raised to be respectful of the expertise of teachers and doctors and to not question them or ask for special treatment.
Early on – which I will call Phase I – when John was upset and had trouble processing what the doctor said, he appreciated my ability to clarify information that we received during doctor visits.
During Phase II, when it was time for him to have his first treatment, he needed to focus on relaxing and on not thinking. Because I had a cold, and we weren’t certain that I’d be well enough in time to be with John in the infusion room, he invited his quiet seminary buddy to drive him to the clinic and sit with him that day. Later, he explained that it had turned out to be the best thing, because he knew that Jose would be quiet and it was easier to not worry that he’d need to help me relax. (I had learned about Rituxan from a friend who years ago had had a near catastrophic reaction, so he knew I’d be tense.) Still, that hurt. Later, there were times when he was grateful for my presence at home and at Kaiser. Sometimes he wanted me to drive and a lot of the time he enjoyed doing puzzles or watching TV together at home.
Now we are in Phase III. He is back on watch-and-wait and does not want to think or talk about cancer very often – it makes him anxious. He likes it that I’m curious, and that I like to keep connected on [email protected](link is external). “You’ll be up on lots of information that could be very helpful later.”
He enjoys being focused on his interests and on life in general. We love going to museums and restaurants together. He consults with me when I’m concerned about a difficult case and he tells me about the fascinating things he is learning on Ancestry.com and in history and biographies he reads. We go to book groups, we take turns hosting a group that enjoys playing games, we keep in touch with our sons, and we travel to visit family.
Having benefited from his cancer treatments, sometimes he celebrates by independently doing things that he didn’t like to do before. He decided he’d get a great new car, and asked me to come with him to the dealership. Once he arrived, he realized that he really wanted to enjoy the test drive and purchase on his own. I waited in the lobby and fully appreciated having an iPad that doesn’t need Wi-Fi.
It means a lot to me that IWMF has offered a way to give back. The community of caregivers who attended workshops at the most recent Educational Forums inspired me to ask for Peter DeNardis’ help in creating a supportive community for caregivers on-line, first through Google Groups, and now through IWMF Connect(link is external).
You can use #Caregiving in the subject line to introduce yourself and let us know what your experience has been. This way you can keep in touch with other WM caregivers from all over the world. There is so much to learn. Just yesterday a participant, Louise, posted a note on IWMF connect that touched me. I’m glad that she gave me permission to share her words, because her expression adds vividly to what I want to say in this story:
“One day I may greet my dear heart with cheerful optimism, but in that same moment he may not need cheerfulness, but quiet companionship. The next, I may be feeling the weight of all the incertitude and he may need someone eager to get on with the day…. Let’s have the grace to accept that in the moment we may each be in a different place, and only partially able to enter into the place of the other. Peace and good health, L”
(To read the rest of her lovely invitation to each of us to be compassionate and accepting, you’ll have to get onto IWMF Connect(link is external)!)
As I see this current moment of John’s and my story, we are focusing on enjoying the present watch-and-wait phase by doing things that are meaningful and fun. While we realize that medical uncertainty will be an uninvited companion on our journey, we are being careful to not let WM define who we are. If and/or when there comes a phase during which he needs more care, we will be sure to talk about what he wants and needs, what I can best offer, and then together we will figure out what to do about whatever else he may need that I may not be able to provide.
[email protected](link sends e-mail)
Laguna Hills, California