5 things I learned as a leukemia caregiver

My dear husband, Craig, fought courageously, but lost his battle with acute myeloid leukemia in December 2016. It’s hard to believe it’s already been four years. It seems like just yesterday we were facing treatments and hospital visits together.

When Craig and I first learned of his cancer diagnosis in 2014, we were told that he needed to start treatment immediately. That didn’t give us much time to process his diagnosis, much less to gear up for what we were about to face. Craig’s cancer diagnosis turned life as we knew it upside down.

Looking back, I learned many valuable lessons during those three years. So, when MD Anderson asked me to share my experience, I agreed wholeheartedly. My hope is that other caregivers can use my story to help them navigate a new cancer diagnosis with a loved one.

1. Seek treatment from the experts

I wanted the best care for my husband, and I knew that MD Anderson ranked No. 1 in the nation for cancer care. But since staying close to home was really important to Craig, we agreed to remain in Atlanta for his first round of treatment.

When he relapsed after his first stem cell transplant, we made the trip to MD Anderson — and that’s where we went for the remainder of his treatment.

From the beginning, I knew that we were in the right place. Craig’s leukemia specialist, Dr. Naveen Pemmaraju, was so passionate. He and Craig’s stem cell transplant specialist, Dr. Muzaffar Qazilbash, told us from Day 1 that they would be right beside us the whole time. And they were, exactly as promised. That really struck a chord in me, and it’s remained etched in my heart.

Dr. Pemmaraju and Dr. Qazilbash’s expertise, bedside manner, attention to detail and passion for their patients transcend most patient/physician relationships. That’s why, when I had my own cancer scare in 2019, I went straight to MD Anderson. My mother died of uterine cancer not long after my husband passed, so I didn’t want to mess around.

2. Do your research and ask questions

When it comes to navigating a cancer diagnosis, I believe you can never have too much information. Knowledge is power. That’s what allows you to know your options and ask doctors intelligent questions. So, don’t hesitate to educate yourself.

Try to thoroughly understand your loved one’s diagnosis and treatment options. This will help you feel more in control, and will help you to ask questions so you can make informed decisions.

3. Take care of yourself

While I was caring for Craig, I’d try to take naps whenever he did, or meditate or read a book — anything to get my mind off of cancer for just a few minutes. It was important to keep my mind sharp and stay calm so I could care for Craig and our children. I also leaned heavily on my friends and family for support.

I didn’t realize how important this was until I got so stressed out that I developed shingles. It’s contagious, so I had to be quarantined. That meant I couldn’t be with Craig, which was very upsetting for both of us.

Eating a balanced diet, staying physically active, keeping a positive outlook and giving yourself downtime are all important, too. I now know that self-care plays a vital role in caregiving. You have to take care of yourself, so that you can be there for your loved ones. This is probably the hardest piece of advice to follow, but try to do one thing for yourself, even if it’s only for five minutes a day.

4. Stay ahead of cancer treatment side effects

Like many patients, Craig struggled with nausea during chemotherapy. But he never actually got sick. I’m convinced that’s because we were on top of his medications.

A pharmacist had told me early on that side effects are much easier to deal with if you get ahead of them. So, if Craig was supposed to have a pain pill or an anti-nausea medication every 3 to 4 hours, I made sure he got it at the very beginning of that window. Because it’s much harder to get rid of side effects when you’re chasing them.

So, buy a pill organizer, create reminders on your phone, or keep an activity log – whatever you need to help you stay on top of things.

5. Get to know the medications

At one point during his treatment, Craig was taking 42 pills a day. Some had to be taken alone. Some had to be taken together. Some had to be taken with food. Some had to be taken on an empty stomach. That meant Craig was swallowing at least some type of medication roughly every two hours.

It was my job to manage all of those medications. I don’t think people realize how challenging that can be. I literally had to set a timer for myself throughout the night when Craig was at home, so I could wake him up and give him whichever pills he needed. I didn’t get much sleep myself that whole first year.

I sat down with a pharmacist and learned everything there was to know about Craig’s medications. I memorized their colors, the little numbers on their sides, their proper sequence and their possible side effects. I kept them organized with pill pouches.

That’s what allowed me to catch an error one time when Craig was prescribed a broad-spectrum antibiotic in Atlanta that causes neuropathy. He was already suffering from that side effect due to chemotherapy, so I asked his doctors why they’d prescribed him another drug that only made it worse. They immediately took Craig off of that one and switched him to another. We both felt better after that.

As I learned, it’s important to believe in yourself and to trust your instincts as a caregiver. You are your loved one’s best advocate.

Stacy Sager will be honored at MD Anderson’s A Conversation With a Living Legend® on Thursday, Feb. 4. Register for this virtual event.