BY LIZZY SMITH Today I read an article in Parade magazine featuring fellow myeloma warrior Tom Brokaw, journalist, author, news anchor. He has a book coming out on May 12, A Lucky Life Interrupted: A Memoir of Hope in which he chronicles his journey of myeloma diagnosis and treatment. There's no doubt that a cancer diagnosis of any type radically changes your life, mentally, physically, emotionally and spiritually. And it changes the lives of everyone around you. Since it's been over three years since I began my battle, I've learned a lot about me, my loved ones, priorities, my body, and, well, life. Anyhow, in Parade, Tom shares his tips for surviving cancer (or anything similarly traumatic). I second Tom's tips, but have quite a few more of my own to add. Tom's Tips It’s going to be harder than you think it is Clinicians, oncologists especially, are so concentrated on curing and treating the disease they don’t give patients enough of the personal piece of it—this is going to be tough. I had fractures in my spine that had to be repaired that came as a big surprise; nobody warned me that I might get some really severe, threatening fractures. It was painful, and I lost two inches of height, bang! Accept that your life is going to change The kyphoplasty [a procedure to shore up spinal fractures] was a life-changer. The doctor didn’t want me to play golf any more and was worried about me fly-fishing. Golf is something I enjoy, but fly-fishing is a different thing: That’s religion. Hunting is religion for me. I didn’t want to give those up. I did go hunting last fall, and I got really tired. Hunting is a rhythmic sport—you have to turn back and forth, and I had no rhythm whatsoever in my hunting. I couldn’t get my body to respond the way I wanted it to. Break down the mystique of medicine When you walk into a doctor’s office you’ve got to have the same attitude you would about anything else. You’ve got to ask tough questions and you’ve got to not be afraid to challenge their credentials. There’s a lot of arrogance in the medical community. There are good, reliable websites you can go to for information— the Mayo Clinic, the Cleveland Clinic, Johns Hopkins. In my case I thought, ‘I’m on the Board of the Mayo Clinic, they did the diagnosis and they’re going to send me to Sloan-Kettering, which has a big reputation.’ Yet some things went wrong, frankly. But I had enough confidence to say, ‘Hey wait a minute. This is not working. I’m not happy about this.’ Make an effort when you can Last weekend I was invited to attend the Final Four in Indianapolis. I didn’t feel great; I had a sinus condition because my resistance goes down, but I kind of pulled myself together and I did it and I was glad I did. I had a great time. I’m a big event guy and I love those things. Lizzy's Tips Know not everyone is your supporter. Cut them out of your life NOW Honestly, before getting cancer I had the misconception that anyone who was diagnosed with a life-threatening illness or injury was automatically granted kindness and forgiveness from everyone around them. I was wrong. My then-husband called me a thief, drama queen, liar, and lazy, and spit in my face. I immediately left him and filed for divorce. Since then, I've heard from other cancer survivors who had people in their lives do horrific things to them. We survivors must cut people out who aren't positive influences. Immediately. Our very survival (and sanity) may depend on it. Feel no guilt and never look back. Side-effects, treatment schedules, and doctor appointments will dictate most everything in your life. Get used to it Get a good trusty calendar to help you keep track of all your endless appointments, medications and tests. Refer back to it many times a day. That said, it is possible to work around your schedule and build a powerful and amazing life that matters. It will take trial and error as you learn to work around it but never give up trying. Depending on where you are in treatment, you'll have times where managing it all is far easier than others. Expect the ups and downs. It takes time to get used to managing your side effects. Keep trying until you find ways that work I am taking Carfilzomib and on the days of treatment, I can experience intense muscle cramps. One night, I woke up in the fetal position whimpering before I was conscious enough to realize what was going on. I remembered what worked for me before: I jumped out of bed, rubbed peppermint oil into my calves, massaged vigorously, stretched, then piled up pillows under my knees to protect the positioning of my legs and feet, and went back to sleep. It was the last of my cramps. Initially at diagnosis, I had a really hard time with mornings to the point where I would often almost faint when getting up. I finally found a work-around that works for me. I spend 20 minutes with the TV on watching the news and slowly waking up. I then take a shower and go back to bed for a few minutes before getting dressed, then climb one flight of stairs, spend a few minutes resting on the couch, and then wake up my kids and start breakfast. I tried many options before I discovered this but it's been a long time since I've almost fainted in the mornings. Bottom line: Never give up trying combinations until you find one that works for you. Feel free to say no often Know your limitations and say no when you can't realistically do something. It's ok, you must take care of yourself first. Be nice to your caregivers, family and friends Some of your medications (like Dex) will make you feel like a monster. You will need to remind yourself to be nice, say thank you often, and do nice things for your supporters when you're feeling up to it. We cannot do this journey on our own and it's not easy sitting on the other side of the cancer table. Take care of your body It's easy to take lots of medications and sit back and be a sick patient. This is not to your benefit, though. Now more than ever it's time to give your body all the help you can so it can fight better and stronger, and heal. Eat lots of fruits and veggies, beans, nuts, and fish. Limit or eliminate processed foods and sugar. Exercise. Get sleep. And have FUN. Yes, it makes a huge difference. Live life like you never have before Life is precious. Make your Bucket List and start living. When you're feeling down and depressed, get out and do something fun. Go on a trip, go skydiving, make friends, take afternoon naps, take up a new hobby. Life is today. Grab it and find joy. Even with cancer, this is possible.
about the author
Lizzy Smith was diagnosed with myeloma in 2012 at age 44. Within days, she left her job, ended her marriage, moved, and entered treatment. "To the extent I'm able, I want to prove that despite life's biggest challenges, it is possible to survive and come out stronger than ever," she says.