We all remember the day of our diagnosis or the diagnosis of our loved one. The feeling of absolute despair and loneliness. So much went through our minds. That day may even be a blur. But slowly reality comes into focus and the business of getting down to business became your daily focus. Even now you can probably look back on a yearly basis and say, “I wish I knew one year ago what I know now.” Would your decisions be different? I challenge you to consider that. If so, what would be different about them and why?
With couples it's not uncommon to have differing views on how to deal with or make decisions about cancer treatment. My husband and I differed significantly. I wanted to know as much about the disease as possible, to look ahead at what treatment looked like and all it’s possible side effects, to how much it would cost and where he was going to get treatment. Additionally, I was concerned about the possibility of him having to stop work and the consequences of that to our family's’ financial stability. Not surprisingly, he was fine leaving it up to the doctors to make the medical decisions for him, no questions asked. Later, after he had some treatment and a lot of detailed research, I had an "ahh hah" moment. We needed a myeloma specialist. The fact that we didn't have a myeloma specialist in Louisville, KY brought its own set of financial and emotional problems. It took me a while to get my husband comfortable to look outside of KY. Many of you can see where this was heading. While I felt I was in the trenches learning, researching, talking to specialist, learning how to read and interpret lab reports and then researching more, my husband was going to work, coaching and taking everything in stride. At least, I thought he was. He later told me he didn’t have to worry about anything but going to work, he knew I would do the worrying for both of us. He was trying to work as much as he could to continue to save as much as he could because he was also unsure and very anxious about the anticipated cost of his treatment and how he would handle the treatment. Not that he had asked any questions of the doctors about the costs. We had two sons in a private high school and college was looming. Why or even how could we change our perspectives?
This is where our strengths worked, at least for a while. I seemed to be the one to manage the emotional and logistical aspects of the cancer as well as advocate for better and proper care while he seemed to managed his stress by putting his head down and going to work. We were perfectly comfortable with letting the other do their part. His personality was to not complain about anything. I didn’t understand until years later, that he had a lot of anxiety about the health consequences of the cancer and its treatment, like losing his strength and not being able to be the strong, capable bread-winner and strong participating father that he had always been.
We realized that we were simply hiding ourselves in our “roles”. We weren’t handling stress at all because we became too personally bogged down surviving to look at the whole picture, financially and emotionally. I was so stressed that I was becoming ill and trying to hide it from him. I had to learn to back off and give him the space to want to ask questions of his doctors and learn more about his myeloma, and he learned to reduce work and let me pick up the slack so he could concentrate on his treatment. It allowed me to advocate for him when he wasn’t able, it also allowed for him to recover more quickly from associated illnesses and treatment. Both of us understanding his disease, treatment and cost as well as our personal feelings about treatment and care allowed us to free up our minds to concentrate on other things in life. Of course, no matter how hard you try and plan, life has a way of throwing curveballs, and some of them were doozies. We would just regroup, adjust and keep moving forward.
Some of the most difficult first steps are to dig into the scary unknown and stare it in the face. However, it will give you the strength to ask the right questions about your care, and to make the best treatment and financial decisions for you. Your understanding and knowledge of myeloma may not only improve your quality of life and treatment, it could increase your financial security. Dig into budgeting, savings, your health insurance, and your employer benefits. Once you get a handle on these, your foundation for the cancer treatment, you can then turn your focus to other aspects of your life. After all, you are more than just cancer. Take time out to enjoy the “more than”.
about the author
Diahanna is the Financial Program Manager for the HealthTree Foundation. She specializes in providing financial help, resources and education for multiple myeloma 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.