You have been diagnosed with multiple myeloma. You and your family are shocked, scared and shaken. The initial reaction--by you and your doctor--is to start treatment immediately.
STOP! Time is rarely of the 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. Have you considered a second opinion? 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.Unlike some other cancers, myeloma patients often face overwhelming treatment options. Most work at first. But what then? Do you undergo an autologous stem cell transplant now, or wait? If you do decide to transplant, do you start maintenance therapy soon afterwards or wait? When do you resume treatment if and when your numbers start to rise again? And which drugs should be used to best slow your relapse?
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 a general contractor of a building project. Are you into sports? How about acting like you are the owner of a professional sports team? Or the president of the PTA?
Regardless of which leadership style you emulate, remember that 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 create your winning support team:
Â· Primary Caregiver. This may be the most important position. It can be a spouse, family member or friend. While it is best to 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 meds and help you get to and from medical appointments--and to take careful notes and help you ask questions at those appointments. They are also there to provide emotional support and help you coordinate your health care team.
Â· 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.
Â· Medical Oncologist. This is the doc you see regularly. He or she consults with your specialist of choice, working together to make your day-to-day treatment decisions.
Â· 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!
Â· Internist or Family Doctor. Don't let cancer dominate your entire health care world. You still need a regular doc to handle non-cancer -related issues.
Â· Support Group. Multiple myeloma support groups share all kind 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.
Â· 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 MD. How about a massage 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 your own team's leader!
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 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!