Is It Myeloma?
Like so many of us, when I was diagnosed with multiple myeloma, I had never heard of it. It was a complete mystery. When my wife or I called family or friends to let them know about my diagnosis, we’d often hear “melanoma?” or “mesothelioma?”. Then we’d have to explain to people what myeloma is. But then I started to hear about lots of other people with myeloma. I’d hear about a friend or long-lost family member or friends of friends or someone famous. I’m sure my antenna had become tuned in to hearing “myeloma.”
Connecting with other people with myeloma
For a while, I’d go online and search for others with myeloma, for people who were thriving with the disease and I could look up to. I’d also try to find patients who were being treated by my myeloma specialist. This whole effort was good and bad. I found some wonderful success stories, but I also found some heartbreaking tales. Over time, I became a little more selective about stories that I searched for. I did find blogs and sources that I could relate to and that gave me hope and comfort. I still follow some of those but don’t just randomly search the internet anymore.
Also over time, I learned how powerful and supportive the myeloma community is. This disease has some unique challenges, and for me, fellow patients are the best source of support, understanding and information sharing. Since being diagnosed over 8 years ago, there are so many new treatments available. But what works for one patient, may not work on another. And learning about other‘s experiences is extremely helpful.
The emotional challenges of living with myeloma
There are significant emotional challenges when living with an incurable disease. There are times we just want to vent. And again, other myeloma patients are a great source for our vent. They understand and listen. To be honest, there are things I’d share with a fellow patient that I wouldn’t share with my family or friends.
I will admit that if I hear on the news that someone well known has cancer or passed from cancer, I want to know what kind of cancer it is. Is it some sort of morbid curiosity wanting to know if someone has myeloma? Obviously, you don’t like hearing that anyone has to deal with cancer. But there is a kind of sympathetic welcome to the club feeling when someone is diagnosed.
When a hall of famer joins the club
If you know me, you know that I am a lifelong Minnesota Vikings fan. I grew up in Southern California but have always been a Vikings fan. In the 60s and 70s, they were led by the Purple People Eaters, a fierce defense that dominated for many years. During football season, on Fridays, I wear purple, even it means wearing purple to my monthly infusion. Purple Friday is a thing. Recently I learned that Carl Eller, a Hall of Fame member of the Purple People Eaters was diagnosed with multiple myeloma a couple of years ago. If you have a couple of spare hours that you don’t mind losing, I can tell you how I may or may not have crossed paths with Eller at an IHOP over 40 years ago. I’m also thinking that I need a Carl Eller jersey to wear on Purple Fridays. I’ll have to log onto eBay to see if I can find one.
Ultimately, support matters
In all seriousness, cancer is no easy journey. After eight years of continuous treatment, some aspects of this journey have gotten easy. But other parts have gotten increasingly difficult. The lesson is to try not to go alone. Reach out to fellow patients. Have a sounding board. This helps get through the tough times and makes the good times even better. And of course, wear purple on Fridays.
Do you worry about relapse?