Letters From Cancerland: Locomotives
I was recently grousing about the individualized nature of multiple myeloma. In this modern day, we have some cancers that are curable, and many that are so predictable in their course that treatment is standardized.
Multiple myeloma is not either of those types of cancers. What works for you will not work for me and vice versa. Some of you started with MGUS or smoldering myeloma. Some of you may never advance beyond that. Others, and I am in this category, started right out of the gate with full-blown multiple myeloma. Mine came on quickly out of nowhere and never left, regardless of the treatment regimen.
The best phrase I could come up with to describe the nature of multiple myeloma was sui generis, which means "of its own kind," or "unique to itself." In the law, you will come across sui generis in an opinion where the facts of the case are so peculiar and specific that the court (usually an appellate one) recognizes that the holding will only apply to this case and no other.
I like the phrase, but it wasn’t exactly what I was looking for in describing multiple myeloma.
It was my husband Warren who came up with the best analogy.
“It’s the difference between steam and diesel locomotives.”
Note: You need to know that Warren is one of those train guys. You know, the kind that slow down so they will be stopped by the descending railroad gates so they can watch the train roll by and identify which type of engine is pulling the cars. The one who can tell you the status of the restoration of Big Boy No. 4014 in Cheyenne, Wyoming. That kind of guy.
I’m not a train girl, so my response was “What?”
Warren then proceeded to explain why multiple myeloma, when compared to more “conventional” (that is, curable or standardized treatable cancers) was the steam locomotive of the oncology world.
Per my train guy, there were two major shifts in the rail industry with the transition from steam to diesel engines in the twentieth century.
The first shift was external. In this country, the railroad companies began retiring the steam locomotives and replacing them with diesel engines in post-war America. For the most part, the steam locomotives were gone by the late 1950s and early 1960s. Today we look back upon the steam age as part of a romantic and now long vanished past. Fewer and fewer of us have seen a live steam locomotive, except as part of a special excursion or private line.
The second shift was internal within the industry. Steam engines were built one by one. While there was industrial standardization (such as the track width and rail size), each steam locomotive was custom built for the railroad line ordering it. Each line had its own shops and its own unique engines for maximum impact for the road’s needs. As a result, every single steam locomotive was unique, even within its own class with the same railroad.
In contrast, diesel locomotives were quickly standardized and mass-produced. A railroad could decide to add 500 diesel engines, contact an outside manufacturer such as GE, and soon there would be 500 identical diesel locomotives en route to the rail yard.
Oh, now I get it.
Some cancers, and their treatment, are like those diesel engines. When a friend of mine was diagnosed with an aggressive breast cancer, she had her treatment plan at the first oncology appointment. For the most part, breast cancer today is a diesel locomotive. Once the cancer is typed, the treatment plan follows swiftly.
Twelve years into my out-of-the gate multiple myeloma, with the disease progressing and the responsive treatment changing, sometimes quickly, especially over the last five years, I know what I have. I’ve got the steam locomotive, with my oncologists configuring and reconfiguring the specs of their response with every relapse. Like the steam locomotive, each single case of multiple myeloma, including mine, is unique, even at the same stage.
I know, of course, that any cancer, even the ones the oncology world seems to have solved, always have the potential to rebel and not fit the mold. Sometimes even diesels blow up. Trust me, I am not making light of nor envying those with diesels.
I am, however, stuck on the steam engine, looking at the firebox, wondering what’s burning in there. I am counting the wheel arrangement, trying to guesstimate how fast this baby is capable of running with the throttle wide open. My oncologists and I have not seen the multiple myeloma run full throttle yet, but we know that capacity is there.
And I already have my ticket punched.
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
April,
That was a wonderful column. The analogy is spot on. I had no idea that steam locomotives were individually unique. The only thing I can say is that I wish I never had to board the myeloma train and am trying to get off as soon as possible. Unfortunately, this train is like the Hotel California – you can check out, but you can never leave.
Thanks April, for this interesting column! Nice analogy. My family doctor said as much, although not as poetically, when I had the breast cancer diagnosis. She told me the treatments are well worked out for that. What this means to me is that we myeloma patients are in a period of change when the treatments are still being worked out as to what is the best. Not sure if it would get to the point where a certain set of treatments would help everyone, but maybe time will tell.
April,
Great column! I feel that I am always trying to find a good metaphor for people when they ask me about my cancer, an how / why it's so different from more common cancers. The other challenge I think multiple myeloma patients have to face are the 'but, you look so good' comments. Hard for people to believe that you are sick when you don't look like a typical cancer patient. Maybe we are steam engines, that look like Acela trains :).
What a great analogy and description!
April:
As usual, your expressive mind finds an outlook and an outlet.
Just like old 8444, you keep on chugging along. Majestic and powerful, as ever.
Good to hear your "throttle", again. My best to your husband.
Another great column, April! Here's to keeping that throttle in check. Sending lots of well wishes your way.
Great article! Multiple myeloma is a sneaky and tough cancer that has to be treated individually!
April,
Interesting article. I thought you were going to get into how diesel engines turn generators which produce electricity that run electric motors that propel the train down the track. I guess that's for another column.
Dear April, What a surprising article. Your initial sentence grabbed me. "What worked for me may not work for you and vice versa." Then you took me on a train ride. I know nothing about trains, except I like to ride them, but I will borrow this comparison to explain to my other cancer patients how my treatment remains so individualized. Thank you for this column and keep writing.
I am glad everyone enjoyed the locomotives analogy. It works for me, and I now know more about locomotives than I ever hoped to. A couple of you tipped your hand as to the train world – Locomotive 8444 from rneb and Craig wanting me to wax poetic about the workings of diesel engines (dream on). I liked the Acela reference from Kathleen; as she pointed out, we so often hear "but you look great." Steam Acelas – now there's a thought!
April - very clever analogy of multiple myeloma with locomotives. I think your description will stick with me for awhile. I also will remember "sui generis" and how it really sums up people with myeloma and how each patient is so different in diagnosis, treatment and response. Thanks for sharing and keeping us informed.
I loved your column, and Ron Harvot says it right, also. Just like at the Hotel California, you can check out but you can never leave. My, oh, my, that made me LOL. Not really funny, though. I was always a person who enjoyed playing with the throttle response in a vehicle and watching the trains rush by.
April, here is to you and your team of oncologists finding the brakes for your myeloma engine. Stay strong, and I pray you have many days to enjoy your family and the life you have planned for and worked so hard to arrive at. Love your articles.