Living For Lamingtons: It’s Nobody’s Fault
I think that when you are diagnosed with a serious condition such as multiple myeloma, it’s probably quite natural to wonder why this has happened.
The medical and popular media are constantly suggesting that we follow particular regimens in order to keep ourselves healthy and avoid getting cancer. Lots of 'unhealthy' behaviors are thought to increase our risk of getting a range of lifestyle-related cancers. But there is no evidence that multiple myeloma is a 'preventable' cancer. Nothing that we know of that we “did” caused us to get multiple myeloma or even increased our likelihood of getting it.
It was nobody’s fault.
I get some strange comfort from this notion. I am not sure exactly why, but perhaps it’s because, at least, I feel that I am not culpable!
Screening or even routine blood tests might have helped some of us, who were diagnosed late, to discover that we were at risk of developing the disease. However, even that discovery wouldn’t have prevented the myeloma from becoming established. Knowing you have MGUS or smoldering myeloma just puts you in the waiting room. People in this unenviable position know that they are at risk of developing full blown multiple myeloma, but even then they cannot stop the progression nor predict if or when it will take place.
It’s nobody’s fault if their condition progresses.
It would appear that some forms of multiple myeloma may run in families, but there doesn’t seem to be any clear hereditary pattern. So knowing that multiple myeloma does or does not run in your family isn’t helpful. Parents are not responsible, in any way, if their children develop multiple myeloma.
It’s not their fault.
Sometimes friends ask me how I think I developed multiple myeloma. In many cases, I think the person asking the question subconsciously is trying to work out if there’s anything they can do to make it less likely that they develop the disease themselves. I usually say that myeloma is caused by a catastrophic error in a blood cell. To the follow-up ‘why’ question, I just say that the reason is unknown. I often add that it was just bad luck. I can tell that my answer puts some people ill at ease.
In some cases, when I'm asked what I think cauased my multiple myeloma, I think the person really wants to know why I, in particular, got the disease. What is there in my life story that explains it? Is there a lot of cancer in my family? Was I exposed to chemicals in Indonesia? Could my previous infertility treatment have caused the myeloma to progress? If I had had more regular health checks, might I have been able to prevent it developing?
But nobody was responsible, and nobody is to blame.
Going on from this, there’s the lucky or unlucky story of the type of multiple myeloma you have and how it responds to treatment. Again, it is not predictable; patterns exist, but the disease seems to have its own sneaky way of progressing.
I was reading one of Tabitha’s recent columns, which she finished by saying,‘it is what it is, nobody is to blame.’ After years of dealing with smoldering myeloma and without any known deleterious genetics, her husband Daniel's myeloma went into orbit and did not respond well to many regular treatments. Tabitha's column brought tears to my eyes. They had done everything right in trying to prepare for this time. They had even moved so they could be close to a major cancer center, but it still went wrong.
It most certainly wasn't their fault.
Multiple myeloma doesn’t come with the sort of guilt those who smoke may have if they develop lung or throat cancer. It just comes with an unknown cause and an unknown progression. We have little control of our cancer; for the most part, we have to have the medical tests, wait, and hope. And that’s what I do, for the most part.
Marjorie Smith is a multiple myeloma patient and columnist here at The Myeloma Beacon. Her column is published once a month. You can view a list of her columns here.
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Profound Marjorie! Thank you for such a clear and honest message that most of us ponder as we attempt to understand ourselves then explain to our loved ones!
Thank you for writing. I often wonder "Why me?" or "What caused it?", so it was nice to read it's not my fault. I tell myself that often, but being my own cheerleader isn't easy. I noticed you mentioned the infertility drug and since I took them as well, again I wonder how many others have that link. Thanks again. Keep fighting!
Great column Marjorie. It is so true with many cancers; we just don’t know what triggered it and why. Like many with multiple myeloma, my husband was athletic, exercised often, ate the right foods, and thought he was doing all the right things to live a long life. His diagnosis came after a year of various illnesses, fatigue, and general decline in his health. The first two local doctors really did not delve into his symptoms sufficiently to identify his cancer. It took a trip to the emergency room and a sharp nurse to get him on the road to his diagnosis. From there we went to a major cancer center, where he was properly diagnosed and treated. It was there that we realized there was nothing he could have done differently to prevent his cancer. In Tabitha’s words, “It is what it is.”
I totally agree. I can’t imagine how much guilt people have that have done something with a strong correlation to the cancer they acquired, paying the price for something they might not of had to pay. Ouch.
Dear Kathym - Thanks for your very positive comment. Sending you best wishes as you ponder and try to cope.
Hi Estela - It was so nice to read your comments and to see that we’ve had some similar thoughts and experiences. I hope you can “feel” that this diagnosis was not your fault.
Dear Patty - Like your husband, I had been healthy and then suffered this long undiagnosed decline. Sometimes you can even feel that it was your fault that you didn’t try harder to get someone to listen! I hope you both have a good summer and can enjoy each day.
Hi Craig - Thanks for your comment. Yes, it’s nice to be excused that particular guilt! Best wishes to you.
Marjorie, thanks for another enlightening column! You are so spot on about trying to figure out what I could have done differently to prevent getting this disease. I know I have spent countless hours dwelling about how I came to get this. In my family, breast cancer seems to be the norm. Every aunt on my mother’s side of the family battled various cancers...mostly breast cancer, as did two of my three sisters. I was sure that eventually, I, too, would be diagnosed with it. You can imagine my surprise/shock to learn I had myeloma! Where is the fairness in life I ask? J.K. I try not to think about it and go about living in the moment! My new normal isn’t what I would choose, but like I tell everyone, “At least I’m above ground and I’m having fun!” Tabitha is right, “It is what it is!”
Gotta agree with you, Marjorie. In my case, it's possible that my disease is due to exposure to certain chemicals but there's no way to know that and it's not like I was exposed to them for years on end. It also could have a hereditary component as my grandfather was diagnosed with myeloma (although it did not progress to the point of ending his life). No way to know if that's the case either. I think people want to be able to come up with reasons for these diseases to occur because they want a sense of control over it all. If they just "live right", then they'll never get cancer. As your husband's story indicates, though, there's no way to assert complete control over something like this. That doesn't mean that you shouldn't play the statistics and try to live a reasonably healthy lifestyle, of course. But in the end, a random mutation or two is all it takes and how can you blame anyone for that?
Dear Patty, many thanks for your comment. Strange that you seem to have avoided the breast cancer to be "caught" by myeloma - neither of these conditions are easy to cope with. Delighted to hear that you remain above ground and are having fun. That will be my aim for today! Best wishes to you.
Hi Mike, you are right that you will never know what caused your myeloma. A few random mutations and a bit of bad luck is perhaps the easiest way to explain it! I agree with you about trying to live a healthy lifestyle, and I wish you the best of health possible and the best of luck going forward.
I liked your column and agree with it. Once I was in a study group at our cancer center. We were introducing ourselves and telling what cancer we had. One lady made the introduction and then said she had apologized to her family for getting the cancer. Unthinkingly, I blurted out "Why would you apologize? It is not your fault." Later I regretted saying that, but it is true.
Hi Marjorie, I don't really blame myself for getting cancer, since many people have the same lifestyle and did not have the same health issues. But now I try to avoid known carcinogens to stay as healthy as possible. I remember one time a few years ago that there was news that aspartame, which is an artificial sweetener, could cause cancer. So I stopped drinking diet drinks! Later on, I think that the claim was disproved. Obviously, I stay away from strong chemicals, and am moderate in my diet, and exercise daily. I tell myself that even though I have had cancer(s), I have done alright after treatments, and things could be worse. It's all on my scale of 'relativity' I think. Thanks for your thoughtful column; there's no point in patients beating themselves up as to why they got cancer. They should just analyze that, try to avoid making it worse, and strive to get better too!
Dear Joyce, thanks for your comment. I think you were right to say that at your cancer center; surely we should try not to feel guilty. Very best wishes to you Joyce.
Hi Nancy, I agree that, like everyone else, we should do our best to adopt a healthy lifestyle and try not to blame ourselves for having cancer(s). I hope that you’re staying well and enjoying the summertime in Canada.
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