I Wasn't A Caregiver

By Anthony M.

Anthony M. works for a large New York based financial institution and lives in the same small town on the Jersey Shore where he grew up. Perth, Australia, Rachel’s hometown, is literally the farthest city on the planet from it. Anthony shares what it was like to be Rachel’s caregiver for eight years, even though he never liked the word.

Anthony and Rachel, Christmas 2003

Anthony and Rachel, Christmas 2003

I asked Rachel to marry me in December 2003 under the Rockefeller Center Christmas Tree. A girl nearby took a Polaroid to capture the moment, gave it to us, and quickly demanded $20. It was an inauspicious beginning, but only in a New York City kind of way. We were delighted; life was great.

Three months later Rachel found a lump in her breast. Neither of us knew anything about breast cancer. Our next steps were scans, diagnoses, tears, chemotherapy, hosting 200 people at our wedding, double mastectomy, radiation, and multiple reconstructive surgeries. This is not typically what it’s like to be a newlywed, but it was all we knew. We had a solid foundation – best friends completely in love. Everything else was noise.

Unfortunately this love story doesn’t end well. Rachel died of metastatic breast cancer on February 6th, 2012 at the age of 41.

I start with background to give perspective. Any thoughts I have about being a caregiver are inexorably tainted with grief and loss. I’m not sure how helpful this story will be to anyone looking for comfort.

Caregiver, A Word I Never Liked Hearing

I wasn’t a caregiver, that’s not what I did. I believed Rachel and I were two halves of a whole; dealing with the adversity that life threw at both of us, not just her. People don’t always understand this.

So no, I didn’t sign up for this, not that anyone really does. Unlike Rachel, I could have walked away. But I didn’t pause for a second. I never thought about our getting married in the wake of her diagnosis as obligatory or the “right thing” to do – it was the only thing I could do. We were already one.

During the eight years Rachel and I were married, we had great times and terrible times. In 2007, we designed and built a house on a hill overlooking the New Jersey shore. In 2010, we rebranded the warm months as the “Summer of Us” and had a three-month-long celebration of our joint 40th birthdays. There was always a feeling of relief when Rachel was feeling well, along with a prevailing optimism that the wellness would continue and we could manage the disease as a chronic condition.

When Rachel wasn’t well, life was different. Days stuck at home in various stages of fatigue, the sorrow of shaving her hair before the next round of chemo, the horrible mouth sores, and the nasty orange bile dripping from drains were only some of the challenges.

Nothing in our life was typical. It always depended on the status of the disease.

I Did Learn Something From This Cancer Experience

There is no silver lining to the cancer cloud. Rachel and I tried getting back to our lives after her diagnosis and treatment. This is what the pink-ribbon-wearing, Kumbaya-singing awareness campaigns tell us to do. Breast cancer is “survivable”, they say, so we weren’t too worried about the long term. But scratch beneath the surface and you’ll find a different story. Rachel chronicled the progression of her illness along with the hypocrisy of the pink movement with wit and insight on her blog, The Cancer Culture Chronicles. If you want to know what it’s really like to live with metastatic breast cancer and be in a relationship, Rachel wrote about many of our trials and tribulations.

Hands KnittingYou have to really like each other to spend hours in doctors’ offices, hospital rooms, and at home. And we really did. I imagine that a caregiver and his or her ill partner will either bond at a molecular level or grow apart because of vastly divergent life paths. The illness brought Rachel and me closer together than I think would have been possible if we’d both been healthy. When Rachel died, I lost an enormous part of my identity and my spirit.

Perspective is important. What’s happening in your life after a cancer diagnosis is not the worst tragedy in the history of humankind, but it may be the worst tragedy that has ever happened to you. Friends and family will decide how much they want to take part in this dreadful drama. The best ones will stay as close as they always were. Others will fade.

Rachel and I liked to use the analogy of the rock thrown into the lake to explain what happens to your circle of support after a cancer diagnosis. The fish under the rock gets hammered; those nearby shaken; and those farther away notice but are less and less affected with time and distance. It’s tough for anyone to face his or her own mortality. Being around someone diagnosed with cancer forces the issue, and many aren’t up to the task.

Your life will get smaller. Time at home being a caregiver takes away from “normal” life. Rachel and I had to quickly manage the implications of giving up usual things – the ability to have children, various internal and external body parts, most social activities and vacations. Our healthy friends were all collecting things – essentially, they had lives and families – we had cancer.

At some point, you have move on from your grief. I know I can’t lock myself in a dark room and run out the clock on my life now that Rachel is gone. I have to move forward. But it’s incredibly difficult. I’m dating a great woman, and I’m sure I’m driving her crazy. I don’t know how to fully commit to another relationship. I can’t imagine voluntarily subjecting myself to being that kind of caregiver ever again. I’m a strong man, but the thought of having to re-live the life of a long-term caregiver to a sick wife or, God forbid, a sick child would likely break me. I know this isn’t a healthy attitude. I’m working on it.

Time helps.

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