We have all heard the phrase “Hindsight is 20/20”. Yes it can be, if we know to look and be retrospective and heed the lessons learned. However, too many of us don’t take the time to take advantage of hindsight and find ourselves caught over and over in the same tidal pool.
When my husband was diagnosed in 2002 with MGUS, the driving force for me to use as a guide to be proactive in his health as his advocate was the illness and subsequent death of my 5 year-old brother David, who was very rarely spoken of in my family. I always wondered why it was sort of secretive. I remember finding his death certificate in a chest and wondered about him for years until as a teen I asked my mother about him and his illness. You see, I was only one year old when he died, I have no memory of him.
What I know was told to me by my mother, many years after his death was that he had leukemia, diagnosed when he was four. At that time it was a death sentence. He was in “treatment” but it was all experimental at the time. I asked my mother what kind of leukemia he had. She wasn’t sure. She knew she had to give him over 50 pills a day. I asked what they were, she didn’t know. I couldn’t believe how little she knew about his illness or what was being done to him. I always felt that when hearing her tell me about David that she was guarding herself somehow. He was eventually sent home to die. Hearing the bits and pieces always struck a weird chord with me.
It was only as an adult accompanying my husband on his cancer journey with myeloma that I began to understand the horrible cost to David and subsequently my parents and older siblings. I was always trying to investigate his illness from afar. So, now the seeds of questions that always remained with me and the illness and death of my husband has led me to where I am now. Those two experiences, especially the journey with my husband made me acutely aware on a daily basis the urgent need for all patients to be educated in their illness, so they can openly and actively participate in their treatment not only of the cancer but their overall health, mentally, physically and financially.
Overcoming barriers of bias both conscious and unconscious are still huge barriers that many patients face. Educating oneself seems to be the huge equalizer. Knowledge gives you the confidence to question, to make better decisions and to benefit from those decisions. It gives you the relative peace of mind that the decisions you make are in your best interest and your families.
You may be asking how all of this comes together when in treatment for myeloma, or AML or quite honestly, any illness. Simply, the more you know about your treatment the better equipped you are to ask the right questions about the cost of treatment, its side effects, if you are going to have to take time off from work, if there are other anticipated upcoming treatments that you need to prepare for, if your treatment is available in town or if you need to find treatment elsewhere.
You can ask if there are other treatments available with perhaps less associated costs. You can prepare your personal finances and make sure your insurance coverage is the best it can be. Knowing your full treatment plan can help you gather the financial assistance you will need help you get and stay on treatment.
HealthTree as well as other sources offer great opportunities for you to dive in and learn about your cancer. HealthTree University offers over 600 classes on myeloma. You can progress at your convenience. Additionally, learning opportunities can be had through our many chapters, as well as Round Table events. Round Table events are particularly beneficial because it gives you the patient and caregiver/partner opportunities to not only hear in person from some of the most notable researchers and doctors who specialize in myeloma, but to also ask them questions.
These opportunities were not around for my husband and I during his cancer journey and certainly not available to my parents with the cancer journey of my young brother in the early 60’s. Education can level the playing field for many patients. The many webinars presented are also great opportunities to hear from clinicians and other professionals that can provide you with a myriad of information that can help you and your caregiver become empowered.
There is no cost to attend the webinars, workshops or to register for the Round Tables. For those who choose to attend any of the live events, you can even benefit from the tax break for travel, lodging, and food to learn about your cancer.
Knowing all available resources can help you control your stress levels which can benefit your overall health outcomes. And knowing that there are financial resources available to you can help alleviate some of the financial stress that comes with having a very expensive illness.
In one of the few conversations I had with my mother, I asked how they found out about his cancer. She said they were told over the phone. The doctor said "Your son has cancer and is dying.” I can’t imagine living that experience. My mother said she felt hurt and angry for it being so impersonal. She said this was a hurt for which she never forgave herself. This was a time in 1961 where the disparity in healthcare was even more glaring than it is today. My parents didn’t know how or were even encouraged to ask questions to participate in David’s care. David and our family suffered as a result.
I encourage everyone to take advantage of the learning opportunities available to them. To do so will provide you with peace of mind that you are getting the best care while managing the cost of your treatment and reducing overall stress to allow you to live your best life.
about the author
Diahanna is the Financial Program Manager for the HealthTree Foundation, specializing in financial help for multiple myeloma and AML patients. As a professional financial consultant and former caregiver of her husband who was diagnosed with multiple myeloma, Diahanna perfectly understands the financial issues facing myeloma patients.