Pat’s Place: Tips For Creating A Winning Health Care Team

You have been diagnosed with multiple myeloma. You have just been diagnosed with cancer. You and your family and friends are shocked, scared, and shaken. The initial reaction—by you and your doctor—is to start treatment right away.
STOP! Time is rarely of the immediate essence following a multiple myeloma diagnosis. Multiple myeloma tends to be a slow moving, plodding, yet unstoppable disease. A few hours, days, or even weeks are unlikely to affect your overall prognosis.
Even if you have already started treatment, it is never too late to re-evaluate your treatment plan. Why are you and your doctor doing what you are doing? What are your expectations and goals? When is it time to change course, continue with your current treatment regimen or watch, wait, and do nothing at all?
These are big decisions—and very difficult to make on your own, even with the help of a caregiver. Every cancer patient—but especially every multiple myeloma patient—should take the time to evaluate their treatment plan.
Unlike some other cancers, myeloma patients often face overwhelming treatment options. All might work. Some may work better than others. By assembling a comprehensive health care team, you can surround yourself with experienced, qualified health care professionals to help you make the treatment choices which are best for you.
Think of yourself as the CEO of a major company—or the owner of a professional sports team. Powerful leaders in important positions surround themselves with experienced support staff. You should do the same. Here are the positions you need to fill as you construct your winning support team:
- Primary Caregiver - This may be the most important position. It can be a spouse, family member, or friend. While it is best if one person fills this role, it can be done by a combination of people. Your primary caregiver is responsible for reminding you to take your medications and helping you get to and from medical appointments—as well as taking careful notes and helping you ask questions at those appointments. They are also there to provide emotional support and help you coordinate your health care team.
- Multiple Myeloma Specialist - This can be an oncologist or hematologist, preferably from a regional or nationally known cancer center. Once you decide which treatment course to follow, this specialist becomes a consultant, keeping your team on course, or helping you make course corrections as necessarily.
- A Medical Oncologist - This is the doctor you see regularly. He or she consults with your specialist of choice, working together to make your day-to-day treatment decisions.
- Oncology Nurse(s) - Let's face it, oncology nurses run the show! They keep track of prescriptions and remind the doctor about day-to-day details. They are the ones who administer your IV and help minimize treatment side-effects. Oncology nurses coordinate your labs and make sure you are doing OK. In my next life, I am going to be an oncology nurse! These brave, skilled women and men have the difficult task of working directly with the patient day to day. They Rock!
- Internist or Family Doctor - Don't let cancer dominate your entire health care world. You still need a regular doctor to handle non-cancer related issues.
- Support Group - Multiple myeloma support groups share all kinds of details and data. Learn how other patients cope with side effects. Learn what other patients are using and why. Your support group members will become like family. They understand what you are going through.
- Family and Friends - Your friends and family want to help—they just don't know how—and you can't expect them to read your mind. When they offer to help, try and assign them small, simple, and achievable tasks. They will feel good about themselves—and you will feel better knowing you have people surrounding you who love and care for you.
You don't have to stop there! Add a nutritionist and/or naturopathic M.D. How about a message therapist or acupuncturist? Try a physical trainer or therapist. You can make your medical team as large or small as you like. Keep it simple or expand it as you go—it's up to you—you are the team owner!
Of course, you won't be able to build a winning medical team overnight. It may take months or years to develop. And, like a good team owner or coach, you may decide to make changes as time goes on. Remember, winning owners change coaches and team personnel as needed. Team chemistry is important. If someone isn't contributing, or can't get along and work with other team members, find someone who can!
Good luck building your winning health care team! Come on—I know you can do it! Your life may depend on it!
Feel good and keep smiling! Pat
If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at .