Sometimes newly diagnosed patients will contact me, looking for advice.  I love connecting with other patients, but when it comes to advice for the newly diagnosed, I always have to sit and think for a while. What are the most important things they should know? What do I wish I had known when I was diagnosed back in 2005?

I know that every case of multiple myeloma is different, but here are the things I have learned in my eight-plus years with the disease:

You’re the boss of this cancer business. I know your world seems to be spinning out of control.  Take a deep breath. You are in charge here. Not the doctors, not your spouse/partner/caregiver, not the people from your support group, not the crazy gal handing out advice in a Myeloma Beacon column. You.

Yes, all of these people are important and you need them to help you, but you are the one calling the shots. Every patient is different, and you must do what is right for you. If you don’t like your doctor, switch doctors. If you don’t like your treatment options, find out if there is an alternative. If you don’t understand something, ask questions until you do.

Repeat after me: It’s okay to be a complete pain in the butt.

Get a second opinion from a myeloma specialist. This is the most important thing I ever did after being diagnosed with myeloma, and it changed the entire course of my treatment.

Two weeks after being diagnosed with smoldering myeloma, my monoclonal protein level (M-spike) fluctuated slightly, as it does from time to time. A doctor in my hometown – a doctor whom I no longer see – panicked and told me I needed a stem cell transplant immediately.

This approach didn’t seem to match the things I’d read online about smoldering myeloma, so I decided to get a second opinion from a myeloma specialist.

My specialist confirmed that I did not yet have active myeloma.  I was able to delay treatment for 18 months, and I still haven’t had that stem cell transplant that the first doctor felt I so desperately needed in 2005.

I still make the six-hour drive to see my myeloma specialist from time to time, and I continue to see a local doctor regularly. My local doctor is great, but he treats many different types of cancer. He’s the first to admit that he is not a myeloma expert. Having a myeloma expert to share her opinion and specialized knowledge with me makes me feel very safe. Myeloma is a relatively rare cancer, so it’s good to have someone with that kind of expertise on my side.

A final thought about second opinions: If your specialist is far away and you also need a local doctor, don’t worry about hurting your local doctor’s feelings. If your local doctor is in any way offended that you sought a second opinion or is unwilling to work with your myeloma specialist, find a new local doctor.

Learn about your disease. It’s important to understand your disease and your treatment options, to know which tests you need and which numbers you should be watching for when those tests come back. Don’t be afraid to ask your doctor lots of questions, and do enough research so you know which questions to ask. Knowledge about your disease will help you feel more in control and ease the decision-making process.

Early on, I discovered that my cancer center offered “teaching appointments.” When I first started treatment, I made one of these appointments with a nurse practitioner, and we were able to sit down and talk until I felt like I knew everything I needed to know about the drug I was taking.

But don’t learn too much. The Internet is a great resource, but it also can be a scary, scary place. It’s easy to go online for a fact-finding mission and get sucked into frightening statistics and other people’s horror stories.  Believe me.  I’ve done it over and over again, Googling terrible things until I want to curl up on the floor. It’s hard to find the right balance.

Here are the most important things to remember: 1) You’re a person, not a statistic, and 2) every myeloma patient is different.

If you’re a healthy 30-year-old, you’re probably not going to have the same myeloma experience as a frail 85-year-old who has a host of other health problems. As dumb as it sounds, it took me a while to finally figure this out.

Be nice to your nurses. Nurses get things done. Get to know them. Be kind to them. Make them want to return your calls right away. Make them want to hunt through the computer system for your test results. Make them want to kick the butt of the stubborn pharmacy on your behalf. Nurses have amazing superpowers.

Be nice to yourself. You have cancer. That really sucks. Go curl up on the couch and eat some ice cream. You deserve it. But when you’re feeling a little better, remember to take good care of yourself. Get some exercise. Eat some veggies. Find a way to de-stress, if you can. The stronger your body is, the better equipped you are to fight the cancer, and the better you will feel overall.

You can do this. That’s all. If I can do this, you can totally do this. Now go out there and do it.