Published in the Torch January 2014, pages 17, 20.
Sue Drake is wife and caregiver to Jeff Drake, who was diagnosed with WM on May 9, 2012, at the age of 43. She teaches middle school English and science, while Jeff is the Network Infrastructure Manager at a local community college. Sue enjoys reading, writing, and jogging and considers coffee and dark chocolate as two of the major food groups. When Jeff is not talking to computers, he manages to be an avid outdoorsman, musician, and vocalist.
You can use your terminology of choice-–journey, battle, path, survivor, sojourner. You can make it sound more innocuous by calling it indolent and treatable. WM is still cancer and there is nothing indolent about its entrance into anyone's life.
As full-time teacher, mother of two boys (ages10 and 12), and active volunteer at my church, my life was pleasantly busy. When my oldest was diagnosed with dyslexia and I became a full-time tutor as well, the "busy-factor" increased. When my husband and best friend, Jeff, was diagnosed with WM at age 43, my life became reduced to putting one foot in front of the other. When three first-line treatments failed, I seriously began to consider what it would be like to raise our children without him. I wasn't really living at all . . . just surviving between the sunrises and sunsets.
With Jeff currently on the ibrutinib trial, we are no longer infusion- or plasmapheresis-dependent. During the past few months I have been able to breathe and take a step back from the picture of what had been our life for the past year. Here are a few truths as a caregiver that I learned from the classroom of WM.
I learned how to say yes.
Declining help had more to do with my pride than anything else. I had to get over the fact that Wonder Woman had lost her cape, the invisible jet had crashed, and my body wouldn't fit into that outfit. I needed help and it was selfish of me to deny others the only avenue they had to reach out to my family.
I learned how to say no.
I want everyone around me to be happy (you can quit laughing now). When asked to volunteer for something I knew would throw my balance over the edge, I didn't want to risk the distasteful thought of disappointing someone. After a few of these instances, I realized that there are other people who could do these tasks just as well as I could, but as a caregiver and a parent, there is no one who can do the task of mothering my children and caring for my husband like me.
I learned how to prioritize.
Sometimes the dishes got left in the sink, the weeds didn't get sprayed, I ordered pizza instead of cooking, and the inside of my van looked like a dumpster had exploded. Eventually the dishes got cleaned, the weeds were executed, I managed to put spaghetti on the table, and I got a shovel for the van. But I had to let go of my tendency to obsess about the small things and enjoy the big things, like losing my shorts in a family game of Monopoly.
I learned to take time for myself.
And NOT feel guilty about it. I am no good to my family when I am burned out and surly. It is far better for me to drive 35 minutes to the nearest Starbucks, drink a horribly overpriced double-shot latte, listen to the small talk and feel "normal" than if I had spent that time doing something I thought had to be completed right then. Sometimes removing myself from the situation, even for a brief respite, was enough to keep me going for days. Recharging my batteries benefited my family just as much as it benefited me.
I learned that helping others in small ways is a great way to keep my focus outward.
Cancer and chronic health issues had pushed me into a narrow focus indeed. I was a Google addict and knew more about WM than what was going on next door. Running a portion of the meal I had just prepared to my neighbor whose husband was suffering from pancreatic cancer gave me a reality check. There are other folks, even in a 5-mile radius of my house, who are also suffering. We are not alone. Journaling on CaringBridge has also allowed me to share in the "bigger picture" and sometimes even helps other people in ways I never imagined.
I learned that I am not in control.
And that is OK. Consider Disney's Aladdin and the genie's boisterous proclamation: "PHENOMENAL COSMIC POWERS . . . and an itty-bitty living space." Change the wording a bit and it describes where I was: "PHENOMENAL COSMIC BURDENS . . . and an itty-bitty coping capacity." While my faith in God has always been a prominent part of my life, I realized that I operated under the notion that God needed my help in running the universe. Stripped of that ridiculous notion by circumstances beyond my control, I felt a bit lost but also relieved. While we all do not share the same faith, we could all probably agree that we are not God. Isn't that a relief?
I have learned not to underestimate the deep effects of cancer and chronic illnesses on the human heart and soul.
It is not easy to balance my desire to dismiss the inconsequential 30 point rise in an IgM reading while also to be fully supportive of my husband who fears an upward trend. To dismiss the fear would be just as damaging as feeding the fear. While I may be holding down the fort, he is the one whose bodily fort is being bombarded by an enemy invader. I need to be respectful when he doesn't want to talk about it and support him when he has moments of fear (or whatever range of emotions this ride can cause). Even those who weather this storm well are still battered and need to know their caregivers are a safe harbor when they need it.
Yes, it's cancer. Ugly, fear inducing, and costly in so many ways.
But we are choosing to actively live with it each day rather than waiting to die with it or from it. Each day is too precious to be surrendered to a mindless disease. Our hope and prayer is that you will join us in exploring the fullness of life between each sunrise and sunset.
Published December 2014