The most meaningful thing I’ve ever done was being a caregiver

I lost my father to cancer when I was 21 years old. I was in the Navy and out at sea when I received the news. I wasn’t there in the months that led up to his succumbing. I wasn’t a witness to his suffering. I was not there to see how this effected my stepmother, Thalia, on a daily basis. He loved Thalia deeply. That was 27 years ago. I know all this now but I didn’t then.

Even after the loss of my father, cancer seemed a distant stranger to me. After all, I was a strong, healthy, young man with his life ahead of him. Cancer happens to old people, I thought. Cancer happens to people who take risks (Dad smoked cigarettes most of his life). That wasn’t me.

Then 23 years later, on December 23, 2011, my wife, Heather, was diagnosed with brain cancer. After six months of severe headaches, they discovered a large tumor covering a 4 inch area on both sides of her frontal lobe and spreading across the corpus callosum. Mixed Glioma, predominately Oligoastrocytoma was the official diagnosis.

I met Heather when both of us were in our mid-twenties. Heather was an extraordinary woman. Every single person who knew her would tell you that. She was physically strong, unbelievably compassionate, and smart as a whip! We lived together since Christmas of 1992 and were married in 1996. Heather became an oncology RN in 2007 after spending a largely unfulfilled career in hi-tech. She took good care of her family and her patients.

I was determined that this was a fight that Heather would win. For the first couple of months, we uncovered every stone looking for treatment options. Our time was consumed with doctor visits and insurance forms. She and I were determined to ensure that our 6 year old son was going to have a long relationship with his mother.

The treatment plan was decided and it was to undergo a debulking procedure at UCSF. Thirteen hours after that surgery, on March 3, 2012, Heather suffered a series of strokes and fell into a coma where she remained for over 2 days. When she came out of that, she was blind and would regain some of her vision later but suffered a great deal of cognitive trauma. She would need months of rehab and treatment if there was any hope for her to regain any independence.

Suddenly, I was on an island. I wasn’t sure how I got there or which direction the mainland was. Lost. That feeling didn’t last long. Because love can lift you if you allow it to. With all that weight, I could have sunk in the sands of that island, but I didn’t. I rose above it. High in the sky where I could capture my bearing and navigate my wife and son to safety. From that moment, I became a caregiver.

That’s exactly what I did. My god, I had to learn so much. Daily. PT, OT, ST, RT, and neuropsychology therapy. There were doctors to visit – sometimes multiple in a week and at great distances. I also had to be the cook, clean the house, manage the household, and be present and available to our son. I also had to work. My employer was unbelievably supportive and allowed me to work from home for almost my entire time as a caregiver. I worked hard at making sure that each day was as normal as possible. Whether that was ensuring we all sat down to eat meals together at the kitchen table or taking a trip to the farmers market, or any other countless activities you do in life when cancer isn’t present. Only these activities were far more appreciated by me because of cancer.

I had become this person who could do it all. It felt easy because I wanted to do it. I wanted our son to see how we take care of each other in a time of need. But it was far from easy. I can remember running errands to the grocery store by myself and getting upset seeing a family of three together just living happily in their normal life. “WHY CAN’T THAT BE MY FAMILY!”, I’d scream to myself. I would get back in the car and drive down the highway. I’d scream and cry as loud as I could. Oh the things that left my mouth! Doing this, I found, was a huge source of therapy.

Nine months after Heather’s surgery, we realized the treatments were not working. Three sets of different experimental chemo trials and a round of max-dose radiation treatment wouldn’t stop the growth of this tumor. Yet through it all, Heather was strong and emotionally resilient. She always smiled at the presence of family and friends. She’d even feel bad for the doctor who had to deliver her bad news. I suspect now that she learned this as a caregiver herself. She must have learned that one of the greatest sources of fuel that you can receive as a caregiver is a smile, a hug, a look that says “thank you” for being here in my time of need.

Heather passed away in the early morning hours of June 10, 2013. I was right at her side. That experience along with the previous 17 months of caregiving, changed me at my core. I never would have believed I could do the things that were asked of me as a caregiver. It was the single most difficult job I ever had but I LOVED DOING IT! I was fortunate because I had a patient who was truly appreciative and would express that on a daily basis. Other caregivers don’t always get that feedback. Nor do they get the outside support from family, friends, or employers.

It took some time adjusting to getting on with my life. I think of Heather every day. Multiple times. That’ll never change. I also think of my stepmother, Thalia, a lot. Until recently, I had no idea what she was up against all those years ago. I wish I could see her now and thank her for the care she gave my father. I do know that if/when I find myself in Heather’s position, I’m going to find ways to smile and express my gratitude toward the person caring for me. Whomever you are, I love you.

Paul was a loving husband and father when he was thrown into the world of cancer in December 2011. His wife Heather was diagnosed with a brain tumor and he proceeded to travel the journey as her primary care giver, an experience that changed him profoundly. Heather passed away in June of 2013 and Paul has had to adjust to life without her as an individual and as a parent. In this blog, he shares his experiences in life on the other side.