Myeloma Mom: Just Diagnosed? Remember, You’re The Boss
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.
Karen Crowley is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Even as a NOT newly diagnosed individual, I loved this. I especially loved the "learn about your disease -- but don't learn too much!" Words to the wise, indeed!
Great pep talk article and an encouragement, much like the singer Mandisa "Your An Overcomer". Words to live by. Thank you!
Good stuff. Stay strong.
Another great column ... absolutely spot on!
Great Column. That was the most important thing I learned ... I am the boss! And so true about the nurses, in my case, especially the treatment room nurses. They are the best! Thank you.
Very well said. I lead a local support group and talk to new patients on a far too regular basis. I will keep these points in mind when talking with them. Thanks!
OK - I know you wrote this to ME. I have read all of your columns and blog, but this is the first time I am posting. I was diagnosed end of Dec 2013 - right before Christmas. I am 42 years old - wife and mother to 2 kids (10 and 14). You hit every thought I have had since -- right on the money. Thank you. I have grappled with my new diagnosis -- and dealt with my "Nightmare Before Christmas" story -- but feel the strength and power from all of you who have been here before me when I read good things like this. I just finished my first round of chemo yesterday -- 3 more to go, but so far - still being the mom, wife and employee before I was told of my condition. Feeling very lucky to have the chance to fight this along with all of you. Thank you. You are so right to not over research -- just educate yourself. Thank you for your advice. A new club member is taking it to heart.
Thank you for the great advice and insight. In the first weeks after I was diagnosed I was a total mess after reading some of the horror stories on the internet about this disease. Friends came up with wacky cures that they had read about online, treatments that would most likely have killed rather than cured. My own family was also in a panic and my brother told me to get my affairs in order ASAP!
Thank God I found my oncologist, whose first words were "Don't believe everything that you've read on the internet. We are going to work together to get you stable and feeling better".
Another blessing was finding this web site and reading through the writings of the "thrivers" who are dealing with this disease day to day and not allowing it to define them. The Beacon is also the first place that I come to for the latest research on MM and the best interpretation of that research.
Also, great advice on treating one's oncology nurses with the kindness and respect they deserve. Fighting this cancer is a team effort and on some days even a hug can make a difference.
Your words today are the best kind of hug. Thank you.
Thank you for your column, it was very helpful. I don't know what your circumstances were as to why you did not have a stem cell transplant, but I was diagnosed a year and a half ago and have not had one for one reason or another. It is good to see the amount of years you have had without having one. I know patients have lived for a long time, but it is always good to read it. Thank you for mentioning "be good to your nurses" as they certainly are good to us.
Karen, your article rings true. A patient must seek out advise from a specialist. I moved from a small Arizona town to the Phoenix area to be close to Mayo Clinic and it's myeloma team.
Although I'm still smoldering after 4 1/2 years, I'm glad I didn't listen to the first hematologist I consulted. He recommended a SCT and when I decided to enter a clinical trial at the NIH, the eminent Dr. Landgren shuddered at that thought. Remember the adage "always deal with the head of the horse as we all know what comes out the other end."
Another suggestion I would like to offer to the myeloma gang out there is to know what kind of myeloma you have -- I have IGA Kappa -- and if and what kind of deletions, translocations, or gains you may have. I was surprised how many long-term myeloma patients I've met in seminars who have no idea of their pathology. Not good.
Thanks for your informative article and best wishes to all.
This is the best advice ever!!! When it seems as though you have lost all contro with the diagnosis of MM, the power of knowledge, finding doctors who are specialists in the evolving treatment of MM, and the nurses who make things happen, we, the patient, can be our own best advovate. Right on Karen!! Bev
Thank heavens I found this site. I was just diagnosed today with SMM and felt my world spin out of control. The article and comments are truly helping.