Kay Cromie was diagnosed with multiple myeloma in 2003 and is a firm believer that every myeloma patient needs to be their own advocate.

“It’s important to know enough about the disease so that when you start treatments, you can track your progress…Some people say their doctor will tell them everything they need to know, but you have to be your own advocate,” said Cromie.

Based on her own experiences with myeloma as well as experiences of other myeloma patients, she has developed a set of tips for being your own advocate.

In this article, Cromie shares her tips with the hopes of enabling other myeloma patients to take charge of their situation, learn more about myeloma, get a better overall experience from each doctor visit, and be empowered against myeloma.

Find A Doctor That You Like

After being diagnosed with multiple myeloma, one of the first things to do is to find a doctor that you like, respect, and trust. “Don’t be afraid of offending the doctor if you don’t like him or her,” said Cromie. Her advice is based on experience after several unpleasant visits with her first hematologist/oncologist. “As soon as I got home from the appointment, I called and said I needed a new doctor. This doctor is not working for me. She doesn’t have a positive, go get ’em attitude.”

Cromie explained that an unpleasant experience with your doctor is nothing to be shy about and something to confront head on. “You have to be comfortable with this person and trust them with your life,” she said.

Cromie stressed the importance of developing a rapport with your doctor so you can feel comfortable communicating your concerns, asking questions, and discussing treatment options with your doctor. You can build this rapport “by showing an interest and asking questions, not just sitting there and taking what the doctor says as set in stone. Don’t be afraid to question them or to ask ‘How come we can’t do something else?’”

By opening up the channels of communication with your doctor and taking a more active role in your own treatment, Cromie believes “You’ll gain the respect of the doctor if they see you taking charge of your case.”

Get A Second Opinion

A second opinion to confirm your diagnosis and to discuss your treatment options will allow you to decide which treatment plan is the best one for you. “I decided, even before meeting my first doctor, that I wanted a second opinion. I knew this was an awful disease and I just wanted to hear from two different points of view,” said Cromie. There is such a thing as too many opinions, though. Cromie suggested, “I think two is plenty.” Otherwise, the options can be too confusing.

Don’t Be Afraid To Speak Up

“Some people are afraid of telling the doctor they don’t understand something and need a better explanation. If you think you understand something, don’t be afraid of saying, ‘This is what I think you’re telling me,’ and the doctor can confirm or correct you,” advised Cromie.

“Some patients are afraid of upsetting the doctor by asking too many questions—don’t be. Don’t think any question is too stupid to ask—ask it.”

She also emphasized how important communication is, whether it is between you and your doctor or you and a nurse practitioner. “Never be afraid to speak up,” said Cromie.

For example, Cromie gets an infusion every three months. The infusion is normally given over 15 minutes; however, the quick infusion rate made Cromie ill for the next three days. Despite her physician marking down in her file that the infusion should be given to her over an hour, the nurses do not always look at the file. So every time Cromie goes for her infusion, she speaks up and explains to the nurse that she needs the infusion to be given over a longer period of time, or else it will make her ill.

“Don’t be afraid that you are going to offend someone and that they are going to be mad at you…Why should you go through needless suffering when it can be prevented?”

Bring Someone With You To Your Appointments

Cromie emphasized the importance of bringing another person to doctor appointments for moral and emotional support, as a second set of ears, and also to ask additional questions.

“In the very beginning, you are so overwhelmed with everything. Always be sure you bring a second pair of ears with you to each appointment,” Cromie advised. She explained that you will often find yourself fixating on one thing the doctor said, so you end up missing the rest of what he talks about.

Now that Cromie has been seeing her physician for several years, she has found that she does not need to bring someone to her monthly appointments where she gets her prescription, has her blood drawn, and goes over her labs with her physician. However, when she goes for her yearly biopsy, “My husband comes with me because we sit down and go over everything. If the doctor goes over something, and I miss it or fixate on something, it’s good to have another person there,” said Cromie.

Based on her experience while her mother was ill with non-Hodgkin’s lymphoma, she advised that it is important to have someone always attend doctor appointments with the elderly.

Take Notes At Your Appointments

Taking notes is a good way of having a record of your conversation with the doctor that you can reference and think about later, or even share with someone.

“In the beginning, you are not going to be prepared to do this, so have your caregiver or whoever comes with you to your appointments take notes,” Cromie advised.

However, during later appointments or during appointments where you are learning new information, it can never hurt to bring along a notepad to take notes yourself. By doing this, you can note things you may have questions about or do not understand or points you would like to bring up later.

Keep A Notebook Handy At Home For Questions

You may think of questions from time to time that you want to ask your physician. However, when you get to your appointment, you may get nervous and forget some of the questions you meant to ask. For this reason, Cromie suggested keeping a notebook around the house where you can instantly jot down a question. Then take that notebook with you to your doctor appointment.

“I have a pad that I keep handy, and when I think of a concern or a question I want to discuss at my next appointment, I jot it down. It is so easy to forget to ask your questions at your appointment, unless you write them down,” said Cromie. “My doctor always asks me if I brought my questions or concerns with me. She really likes the fact that I take the time to write them down as I think of them during the month. Don’t think any question is stupid—write it down.”

Don’t Focus On The Statistics; Save Your Energy

Fighting myeloma can take a toll on your body, both physically and psychologically. Reading scary and often out-of-date statistics about efficacy, side effects, and prognoses can lead to fearing for your future. Fear does not help a cancer patient get better, so Cromie advised avoiding these statistics altogether.

“In the very beginning, I decided it was not a good idea to read all the statistics about this disease. I knew I needed all my strength to fight the beast, and this kind of information would only serve one purpose: to stress me out.”

Keep Track Of Your Labs

“I set up a spreadsheet and kept track of the numbers that I knew were important to watch. It was a very positive experience for me to be able to watch my progress and see my numbers improve drastically,” explained Cromie. “This is an important part of being your own advocate.”

Cromie also recommended using a spreadsheet to graph your numbers so that you can see a trend. The International Myeloma Foundation offers free software, called Myeloma Manager, to help you keep track of your lab results.

“On two different occasions, I actually mentioned to my doctor that I could see an upward trend in my numbers over the past several months. Your doctor sees so many patients that they don’t track you as closely as you can.” The upward trend in Cromie’s numbers were an indicator that her treatments we no longer working as well. “When I noticed the numbers increasing gradually, I started doing a little research on the different drugs available and what the side effects could be. I wanted to be able to discuss the different treatments with my doctor when the time came to make a change in my medications.”

For more information about Kay Cromie, please see the Personal Perspective in which Cromie described her diagnosis and how she started a myeloma support group.