Today I’m in remission and I’m thrilled. It’s been three years of treatment and just last month I actually started running. To tell you the truth, I really hate running, but I felt so overwhelmed with gratitude for the ability to run, my body wanted to run. It was very unlike me as my sister will attest. I’m back to taking care of my family, my hair has grown back and is almost back to normal, absent the chemo curls. Of course I have a completely new perspective on life in general, and I am truly enjoying the moment.
But there is always an undercurrent of anxiety, wondering if (and most likely) when it will return. I just attended my 41-year-old girlfriend’s funeral (she had ACC, an even more rare cancer than myeloma) which was a reminder that cancer doesn’t wait just because you want it to. I’ve had friends and relatives who were emotionally jarred when their breast cancer came back a second, then third time. I wonder if it’s better to think you are in the clear, or better to expect that it will return. Both outcomes do a number on your psyche.
If my myeloma were to come back tomorrow, what would I do? I think I would visit both of my outstanding doctors and get their opinions – they were both magnificent. But I wouldn’t want to stop there. Knowing more than when I started, I would want to know about the most innovative research happening in myeloma – about every possible treatment and potential cure. I would want to know where the best clinical trials are happening and if I’m a good match. Knowing all of this before I relapse is critical. After is too late.
After relapse, the family is in a panic – which treatment to choose, where to live, who to help with the kids, how to give them a sense of normalcy in a world of crisis, and how to cope with it all when you’re under tremendous stress and have a seriously reduced mental capacity while on medication. It’s a terrible time to begin your research.
As a new patient, I want to be able to go online and see all the doctors that specialize in myeloma so I feel like I am making a choice based on solid information. I want a doctor that is beating the “average” 4-6 year life expectancy and achieving closer to 7-10 years or beyond. I want to understand who is doing what research and identify the areas of research that look the most promising. I want to know how to sort through all of the available clinical trials on www.clinicaltrials.gov and match them to my personal profile and my best potential outcome. Right now, all of this takes more than just hours – it takes days or months to wrap your head around all that is out there. All this assumes you are capable and willing to do the deep dive into the research in the first place. I think most importantly, I want to feel like I am making a proactive and personally crafted choice, not succumbing to whatever life is handing me.
I think that I am not the only one with myeloma that wants this. So one of our first projects is to create the Myeloma Specialist Directory to share what we are learning and help other patients find a myeloma specialist that suits their desired approach to treatment. We invite great myeloma doctors to participate. We invite you as patients to invite your doctors. We want to gather as much information as we can, as quickly as we can before we put our life into someone else’s hands.
If you are a Myeloma Specialist, you can submit your listing here: Myeloma Specialist Directory
Here’s to running, remission, research and a little more control when it comes to the other shoe.