From Cancer Caregiver to Advocate

During the course of my sister’s cancer journey, we faced what we all feared would be “the end” four times. Even during that fourth time, I wondered how it could be happening again. Some might think that after being so close to the end three times, she’d always just make it through. But with cancer, one can never simply assume that everything will fall into place and work out the way that you want it to.

For me, number three was different than all the rest. She had failed two other treatments with severe complications and we now faced limited options. We were so limited that stopping treatment and entering hospice began to become a real conversation, despite the fact that that’s not what my sister wanted. In the end, her oncologist seemed to fixate on a targeted therapy known as Adcetris (brentuximab). My sister had severe reservations about this medication. Having reacted to everything else so poorly, she was more worried that she would die from side effects rather than cancer.

When her oncologist told us about the medication and I saw how reluctant she was to take it, I went straight to research — what alternatives could be given, if any? She didn’t want to move and do a drug trial, nor was ready to begin hospice and walk away. So, I spent night and day studying trying to figure it all out. I had studied medications before, but this was on a whole other level. This was in an effort to directly save my sister’s life, and I most certainly felt the pressure to get it right and to find something quickly.

I came across a drug being marketed as Opdivo (nivolumab). It was not for blood cancers, though. It was meant for lung cancers. I had found a lot of medications for other cancers and kept going. This one was different. This therapy was having astronomical success in the patients that were receiving it — so much so that a doctor in UK thought it could change the terminology in some lung cancer patients from “terminal” to “treatable.” I was attached. I wanted my sister to get this medication. In my eyes, it was the only option.

However, there were still many issues — chief amongst them that her oncologist wanted to try the Adcetris because it had proven to work in other patients. It was being dosed, and even though it came with many complications, this is what he thought best. Yes, he is a very tenured oncologist. And yes, I disagree with him, but I still have a tremendous amount of respect for him. That being said, I thought he was making the wrong choice. No matter, she went for it and we began dosing Adcetris.

Five treatments in and it was discounted as every other therapy had been because of side effects. She was defeated and everything stopped once more. I was angry that it hadn’t worked and felt that now was the chance to try this immunotherapy agent, Opdivo. After the contention between Colorado and insurance over dosing, she began treatments.

In my eyes, this was the hardest medication she got, not because of how she handled it, but because I felt like I couldn’t breathe. Here was my sister, sitting in a clinic getting a drug infused into her veins that I had fought for. While the doctor agreed to treat, I was still the one had advocated for it. The waiting was agonizing between tests and treatments and I feel like I never truly breathed because I was so worried about a severe reaction as she had experienced so many times before.

In truth, while I think it was the hardest medication, it was the easiest. She developed a minor rash reaction and nothing else. There were no blood transfusions because it was an immunotherapy. No nausea or trips to the ED- nothing. It was almost too good to be true. But at the end of October, we found out it was in fact true. Her scan was clean and after nearly three years with cancer, she was finally in remission. A bone marrow transplant would happen in January of the following year and as of today, she remains in remission.

This journey is still very fresh in my mind. It is something that I share here and with others often. Not because it is a matter of who was right and who was wrong, or even a cautionary tale that I am hoping to share. For me, I share this piece of my story because it was the final event of my transforming from being just a caregiver to also being an advocate.

While it was my job to take care of her, it is also my job to advocate for her when in vulnerable situations. Patients with cancer need to know that they are not alone. They need somebody to help make their wishes heard. They, too, need an advocate.

Advocating is frustrating at times. Sometimes the person that you are advocating for may not fully know what they want. And other times, it is because getting others to listen to what really is important can be quite the challenge. Ultimately, it is so very worth it.

For me, I’ve continued on. I’m taking the skills I learned and am applying them towards a nursing degree. But not everybody has to become an oncology nurse to be an effective advocate. Doctors, researchers, volunteers, nurses, family and friends are just some of the people who make up the team that surrounds a person going through cancer. As they all have their roles, so does an advocate.

The advocate is the voice for the patient and for the family — that person who they turn to when everything is confusing and the data needs to be broken down. You support them and provide guidance in one of the hardest moments that anybody could experience in life. I got involved because it was for somebody that I loved. As I continue on, I see being an advocate as a calling.