By Jennifer Ahlstrom | Posted - Jan 21st, 2017

 

 

 

 

It Takes a Village in Maintaining Your Myeloma Future

BY YOLANDA BRUNSON-SARRABO Okay, you’ve just been diagnosed and your head is spinning about what to do next. What should you be asking this team of new faces that may be speaking to you about your options? You’ve been provided a variety of details on your prognosis. First, know that it’s perfectly normal to be perplexed - this is a lot to digest and grasp. You have to pass through the emotional stage that you have this disease, then it's time to find a team you trust so you can proceed with an action plan. Those affected by multiple myeloma are in the same boat, but our stories are so very different. My first experience with a hematologist and the dialogue that followed made my decision to find a 2nd opinion a necessity. I was diagnosed almost 9 years ago, but treated with a regimen just 2+ years ago. There was no need to jump the gun 9 years ago as my first doctor wanted to do. I say this because you may or may not have a smooth transition upon being diagnosed. You may not feel the people telling you this news are qualified to handle your situation or perhaps you are so struck with the news that you’re too trusting of your initial healthcare team and possibly not asking dire and clarifying questions. If this is the case, it’s totally understandable but at some point you will need to get a handle on your specific situation with your new team. Life as you once knew has been forever changed. If you’re too ill to cope, ask a caregiver to step in because you need the correct eyes and ears open around you to delve into action on your journey. Dealing with any chronic condition such as multiple myeloma comes with a team of people that who will be on your treatment journey. Here are some key people that you should fully understand their importance to your road of recovery and remission:

  • Myeloma Specialist
  • Myeloma Nurse CNS
  • Myeloma Nurse RN
  • Lab Techs
  • Administrators
  • Cleaning Staff
  • Security

Here are some you may or may not encounter on a treatment of follow-up visit. I must say 1, 2, 3 are definitely a must! Myeloma Specialist- A myeloma specialist is very needed to extend life with this disease. No other doctor can fully understand the logistics that come with myeloma. I was told to seek a hematologist as this is a form of blood disease, but a myeloma specialist knew more regarding the staging of my disease and myeloma in general. You want someone who has seen the full range of myeloma with hundreds of patients, not someone who knows of it, but is not clear on how to treat it properly. Myeloma Nurse (CNS or CNP)- A nurse with the title of Clinical Nurse Staging or Clinical Nurse Practitioner is another key person. These individuals are actually the ear and eyes to the myeloma specialist. They will usually be the ones to explain further to what your doctor has advised. They may be the first you’ll meet to take all of your information and alert the oncologist before your meeting. They can also be your first point of contact if your doctor is not available. Myeloma Nurse RN- A myeloma nurse RN is another important member of the team as they’ll work directly with the CNS, if the doctor is not available. During treatment you may be in contact with a RN who will help administer your treatment. They will discuss your medications, problems with your medications or ask if you are feeling well in general. If there’s a problem or your lab comes back questionable they’ll reach out to the CNS to discuss the next steps. If the CNS needs further guidance he/she will then refer to  your myeloma specialist for further help. Lab Tech - A Lab Tech or Phlebotomist will definitely be a great friend (!) in that they’ll be pinching and prodding you to gather blood or urine samples. They’ll ask all pertinent information as you prep to see your RN for treatment. If your blood pressure or temperature is off, they will reach out to the team that includes your RN or Myeloma CNS for further instructions. Administrators- This group of people rarely get the acknowledgment they so deserve. They are the key gateway to get you registered in a timely manner and take care of billing matters or scheduling appointments.They can also help you understand financial resources that may be available to you. Cleaning Staff- Everyone here is part of your team. If things look off in your room, you can speak with your RN or cleaning staff.  I’m sure I don’t have to state to be kind to everyone and that most definitely include these great group of men and women. Security- You may not think about it, but even security is important. As we step into these buildings, whether it’s a hospital or clinic for treatment, it feels good to know if you’re in the process of getting plugged up for treatment that the building is secure. It really is a tight team - or should be. The village listed plays a huge part in your treatment. I didn’t mention the roles of Nutritionist and Social Worker, but they can enhance your experience. This village is large and everyone is here to help you in any way they can. If for whatever reason you feel you’re not getting that first rate care with your team… then you know what to do- Seek another village!

 
Jennifer Ahlstrom
About the Author

Jennifer Ahlstrom - Jenny A - Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical trials. Founder of Myeloma Crowd, Myeloma Crowd Radio, HealthTree and the CrowdCare Foundation.

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