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CaregiversProstate Cancer

Run Your Race: What It Means to Be a Care Partner

Here is some valuable advice regarding being a care partner. Kristin Ainsworth learns that taking care of her husband, who was diagnosed with prostate cancer, also requires her taking care of herself.

December 2017 Vol 3 No 6
Kristin Ainsworth
Waltham, MA

Learning that a loved one has cancer is such a defining moment in one’s life that time often gets reorganized into “before” and “after.”

Before my husband Gary was diagnosed with intermediate-stage prostate cancer, I was a wife, a marketing professional, and a mother caring for 2 young children. After diagnosis, I was still all those things, plus a care partner, which left me feeling a bit helpless at first.

Kristin with her husband, Gary.

Gary was only 55 when blood work required for a life insurance policy showed an elevated level of prostate-specific antigen (or PSA). Because most men are 65 or older when they are diagnosed with prostate cancer, the resources available to him were minimal. I tried to fill that void where I could.

Physical and Emotional Support

I quickly learned, however, that regardless of how involved I was or wanted to be, my new role as a care partner involved more than just physically caring for Gary or advocating on his behalf; it also included providing emotional support and patience as he navigated through his journey. I also strived to maintain a sense of normalcy in our home, particularly for the benefit of our young children, who didn’t understand what was happening to “Daddy.”

When it was determined that a radical prostatectomy was Gary’s best treatment option, he talked to many experts and dove into the details before making his decision. Although I knew what path I wanted him to take, I recognized that this was not entirely within my control. I had to acknowledge my feelings but also focus on being patient and supportive.

I’ve come to understand that the more you try to control an uncontrollable situation, the more frustrating and trying it becomes.

Allowing the Patient to Make Decisions

Gary ultimately underwent surgery in August 2015, but in the months leading up to it I learned that I had to respect that this was his body, and his decision. If I intervened he could have decided something that was ultimately the wrong decision for him, and it could have had a long-term negative impact on our relationship as a couple.

That’s not to say that his decisions did not affect our relationship; they influenced how we interacted as parents, husband and wife, and patient and care partner, but they also affected me as a person.

Taking Care of Myself

I often refer to myself as a “care partner,” because “partner” suggests that we are in this together. Taking care of myself is, in many ways, just as important as taking care of him. I signed up for, and ran, 3 marathons in 12 months, and the training has been a great outlet for me. I decided to take on this incredible physical challenge to see if I could accomplish it, and maybe subliminally, if I could, then Gary could tackle his challenge as well.

And we have an important motto in the running world—“Run your race.” This means focus on what’s best for you: your pace, your nutrition, your shoes, everything. I think that this also applies to care partners: take care of yourself, whatever that may look like, so that you can be there for others as they may need you.

In addition to seeking an outlet physically, I’m working on being present, and in the moment, as much as I possibly can. I think our brains tend to completely derail when we hear a diagnosis of cancer. We immediately leap to “cancer equals death.” I was of course upset when Gary was first diagnosed, but then I realized that prostate cancer, and many other types of cancer, are becoming a chronic disease today and not always the deadly diagnosis they once were.

Living in the Moment

There is no way to know Gary’s prognosis with any certainty, so I decided not to worry about what tomorrow, or 15 years from now, may bring, and instead live in the moment. I decided that as a care partner, I had to optimize today, to plan for today, and get the most out of each day.

What does the plan look like today? And what’s the treatment experience today? And how can we make you feel as good as you possibly can today, because I can think of a hundred different endings to this, and 99 of them are going to be wrong. If you can live in today, you avoid wasting energy on a future journey that may not materialize.

The Mental Gymnastics of Remission

Currently, 2 years after surgery, Gary is in remission, but that still has not provided any certainty for our future. We are in what his doctors call the “sweet-spot” for remission. Every 3 months he has blood work done, and we wait on pins and needles for the results. If it’s negative, meaning his cancer has not progressed, there’s a huge sense of relief. Then we live our life for 6 weeks, before we start worrying about the next appointment. We go through this every 3 months. That’s the type of mental gymnastics we are dealing with right now. As a care partner, I try to remain steadfast and positive. It’s a role that I will happily play, because the alternative is much worse.

Trying to create and maintain a sense of normalcy is probably the most challenging aspect of being a care partner. Gary doesn’t want to be treated with kid gloves, and he especially doesn’t want people to feel sorry for him.

Even 2 years after his diagnosis, it’s hard to know when to bring up cancer, and when to not talk about it. Fortunately, Gary is relatively asymptomatic, which is why asking him about his next doctor’s appointment adds a layer of stress and frustration to his life. He just wants to put cancer on a shelf and not think about it, but he can’t.

Fear of Recurrence

I think for people like Gary and for our family, the fear of recurrence will never go away. Everyone’s experience with cancer is different, but the emotions that can be wrapped up in this are very similar across the board. There’s a fear associated with a loss of control and, to some degree, anger. I’ve found that whether you have a short or an extended experience with cancer, you come to define “a new normal.”

Going through this process, and becoming a care partner, has completely changed me as a person, a mother, a wife, and a professional. I’ve defined my new normal, and I’m starting to see the gift of cancer. I know that many people think, “What good could possibly come from a cancer diagnosis?” But I’m starting to see it. You live your life differently. Your aperture for life becomes very narrow, and you focus on the things that are truly important.

Finding Your Inner Strength

Throughout this process I’ve come to appreciate so much about life—how precious it is; that time is a gift; and that how we handle obstacles means more than the obstacles themselves.

No one prepares you for a diagnosis of cancer. No one trains you to be a care partner, especially for a young cancer survivor. No one teaches you the coping skills you need to get through this journey. And I’m not sure that if anyone tried to prepare us for any of those things, it would be the right thing to do, because each person’s journey is each person’s journey.

Each of us is a human being with a unique blueprint; therefore, it may be necessary to experience cancer as individuals, together.

Gary and I were not offered support services, but I’d encourage people in a similar situation to do what feels natural to them, to find an appropriate outlet to work through their emotions. For some, this may mean participating in an advocacy group. For others, speaking with family members or friends may be a wonderful solution.

Start a blog, write a journal, talk about your experiences, because chances are someone else will benefit from hearing them. Knowing there are others who understand you can make the journey a little easier.

Key Points

  • Although difficult to acknowledge in the beginning, the gifts of cancer will begin to reveal themselves in time
  • If possible, focus on the present and channel your energy into making today a better day
  • Run your race. Take care of yourself so that you can be a better care partner for your loved ones when they need it
  • Start a blog, write a journal, talk about your experiences; chances are someone else will benefit from hearing them

Patient Resources

National Cancer Institute
http://www.cancer.gov/publications/patient-education/caring-for-the-caregiver.pdf
CancerCare
http://www.cancercare.org/tagged/caregiving
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Last modified: January 3, 2018

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