December 13, 2015
AML survivor: What I wish I'd known
BY Roxie Deese
AML: those three letters forever changed my life, but I don't let them define me. I was diagnosed with acute myeloid leukemia (AML) in August 2012. I allowed myself 24-hours of tears, but I planned for battle after that.
In April 2013, after six rounds of chemotherapy, my oncologist, Naveen Pemmaraju, M.D., told me two things I will never forget: 1) my body showed no evidence of disease, and 2) my faith and attitude were 90% of my healing.
Throughout my experience with cancer, I've learned many things I wish I'd known before my diagnosis. Here's my list of things I wish someone would have told me.
- Surround yourself with family and friends, as well as upbeat people. I couldn't have faced cancer without the tremendous help and positivity my family provided.
- Don't get dragged down by statistics. You're more than a number.
- Cancer treatment is time-intensive. Be patient and, above all else, let people help you. Accepting assistance doesn't mean you're weak or needy.
- Keep a journal. It's therapeutic and helps you see your progress. It's also a great place to write down questions for your care team as they come to you.
- Always tell your doctor about changes. It doesn't matter how slight they are. What may seem like nothing to you can be a major issue.
- Ask questions and gently push back if you feel like it's necessary. Remember, this is your body and your life. One of the many things I liked about my treatment at MD Anderson was that I got to be a part of it. The doctors and nurses talk to you -- not at you. Only medical professionals can know what's going on with blood counts, bone marrow tests and other medical procedures. But only you can tell them how you're really feeling.
- Surround yourself with meaningful objects. I found it very comforting to surround myself with meaningful items when I was in the hospital. I was quarantined for 30 days when I received my first round of chemo, so I brought my leopard and zebra cross, a stuffed dachshund, an angel figurine that a dear friend gave me and lots of prayer. I also hung a beautiful cross on my IV pole -- I definitely wanted that stuff blessed! I felt like this was part of my "armor," since, like I said, this was war.
- Take advantage of the amenities at MD Anderson. The Beauty and Barber Shop was one I really enjoyed. You can get free wigs, scarves and hats, and even have your scalp looked over.
- Financial assistance is available. Contact your MD Anderson social work counselor, or your local American Cancer Society chapter for advice and help with financial problems, such as copays or balances owed. They also can point you to a support group and connect you with other resources, including volunteers who can assist with a plethora of other things.
- Read or watch any materials MD Anderson gives you. Sometimes it can be overwhelming, but it's vital information.
- Talk to people in the waiting room. I'm still very good friends with two wonderful ladies I met at MD Anderson. There's something cathartic about speaking with other people who are walking through the same fire at the same time.
- Take time every day to be still. Sometimes we just need to be quiet. I found it helped to pray, meditate and listen to God. He got me you through this with grace and mercy.
These are things that worked for me, and I hope they will help you. From one warrior to another: the most important thing is to keep your head held high and your spirit even higher. And never, ever give up!
AML is one of the cancers MD Anderson is focusing on as part of our Moon Shots Program to dramatically reduce cancer deaths. Learn more about our AML/MDS Moon Shot.
From one warrior to another: the most important thing is to keep your head held high and your spirit even higher.