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Northern Lights: Myeloma Magnet

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Published: Apr 11, 2014 2:51 pm

Since my family have jobs in the health care field, I tend to hear a lot about med­i­cal problems.

I therefore had heard of multiple myeloma before my own diagnosis. Even though I knew of some people who had this disease, I have to admit that I didn’t know much about it, except that it is a blood cancer.

After receiving my diagnosis, the number of people with myeloma I heard about sky­rock­eted, since everybody around me seemed to go out of their way to tell me about their loved ones or friends, or even acquaintances, who have had multiple myeloma.

Since my treatments began, I met other myeloma patients in person and heard about many more, which I don’t think is unusual given that I was now more involved with myeloma.

I was nevertheless shocked when, just three months after my own diagnosis in 2009, a member in my bag­pipe band was diagnosed with multiple myeloma. Isn’t that odd?

It actually frightened me that a fellow piper was diagnosed with the same rare cancer at almost the same time. I put away my bag­pipes and didn’t play them again until I was encouraged to play for our support group’s walk / run in 2012.

While my fellow piper and I have hypothesized about potential explanations for our almost simultaneous diagnoses (environmental carcinogens), I have had other experiences over the years that make me wonder about my role in myeloma.

For example, how do you explain the uncanny events that happened to me recently?

This past January, I was on a short flight from Calgary to Comox, British Columbia, for a visit with my mother, one of my sisters, and other family. I had a window seat. Seated on the aisle was another woman about my age. We started to discuss retirement and ‘empty nester’ types of hobbies (I am not yet retired, but have more free time now than I did when I was younger). She was taking up playing bridge, and I told her that in recent years I had started to write a column for The Myeloma Beacon. I had a paper copy of my latest column in my bag for my uncle, who does not have a computer (my mother also takes my columns to her book club since one of the members has a friend with multiple myeloma).

I handed her the column, and with a startled expression on her face she told me that her brother-in-law had just died of myeloma, 18 years after his diagnosis.

The next day, my mom, my sister, and I were out shopping in Courtenay after a bracing beach walk in a storm that in Alberta would have been called a blizzard. The winds were so strong that we could barely face into the wind.

When we arrived at the mall, my mother was tired so we sat down at a table. I looked up and belatedly saw a sign above our table saying ‘For Keno Customers Only.’ Keno is a sort of lottery game that requires cus­tom­ers to fill out cards with their lucky numbers.

An elderly man came and sat next to us. He was filling out his cards. He mentioned that his wife had been in the hospital for quite a while with cancer, and that he was on his way to visit her. I asked him what kind of cancer, he replied a blood cancer. More questions revealed that his wife was in hospital with multiple myeloma.

As a patient, a support group member, a patient advocate, and a column writer, it is perhaps not too sur­pris­ing that I do hear of quite a few people with the same diagnosis.

However, the two recent encounters in just two days with people whose loved ones had multiple myeloma left me with a somewhat eerie feeling. Could this be ESP?

My sister calls me a myeloma magnet. Perhaps I am attracting people who have a connection to myeloma, much like a magnet attracts iron filings.

Another incident last year gave me a similar eerie feeling.

When my editor and I were in the process of finalizing one of my columns, she suggested the catchy title of ’Watching the Detectives,’ which is the title of a song from Elvis Costello. As some of you may know, Elvis is married to Diana Krall, a jazz piano player and singer, whose mother passed away from myeloma in 2002, after a six-year struggle with the disease. Elvis and Diana have been major fundraisers for myeloma treat­ment and research, and they have been philanthropists for the Vancouver General Hospital.

Have you experienced the same uncanny effects of being more than ever before aware of myeloma in your circle of friends and acquaintances? Does myeloma connect you with people you never expected? Or is it the just the awareness that we are all only two or three ‘degrees of separation’ away from all the other people on the planet?

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The quotation for this month is from Henry Reed (1914 - 1986), a British poet, translator, and journalist, who wrote: “The sixth sense is at the core of our experiences. It is what makes experiences out of events.”

Nancy Shamanna is a multiple myeloma patient and a columnist at The Myeloma Beacon. You can view a list of her columns here.

If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .

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15 Comments »

  • Joyce said:

    When I was diagnosed with MM 2 1/2 years ago, I had never heard of the disease and of course knew nothing about it. I was devastated and was talking about it with my minister. He said there was someone else in our congregation who had it and had been diagnosed about a year before I was. While our church is large (about 1200 on Sundays), I was amazed. He contacted her and she called me, gave me wonderful support and we have become good friends.

    My aunt, who lives about 7 hours from me, knew a minister and she had asked him if his church members would pray for me. His church was small and in a small Indiana town. Turns out, one of the congregation had MM and she called me to give me support before I had my stem cell collection and transplant. We met when I visited my aunt and have become long-distance friends.

    Amazing connections.

  • LibbyC said:

    Hi Nancy,
    Maybe we slow down & become more aware, more open to conversation with strangers, have a "better" ear to hear the nuances in a person's voice, are more adapt at seeing pain in another face.

    Prior to my first pregnancy it was head down & work, work, work. We lived in a small street in Melbourne ~at most 30 houses in it. Did I know anyone else in the street (not really). When I was pregnant, my eyes widened when I realised that 5 other women in our street were pregnant. Sometimes we blind ourselves.
    All the best,
    Libby

  • Nancy Shamanna (author) said:

    Joyce, I think it's wonderful that you could make connections with two new friends thru your church and your aunt's church. We need to know others with myeloma so that we have a support group around us.

    Libby, I know what you mean about finding others who were expecting babies at the same time as you were in Melbourne. One of my very dear friends is a woman I met in a pre-natal aqua fit class back in 1982! To this day, we meet at the gym and chat while working out! She has always encouraged me with fitness, and was a friend who came over to walk with me after my ASCT, when I was still injured and weak too! She recently ran a 10 km race and won in her age category, as usual! I am blessed to have old friends, and also new friends who have myeloma too, from the last few years.

  • marvin said:

    I personally think we have myeloma radar. I am more tuned to the name of my enemy. Before I was diagnosed with multiple myeloma I had never heard of it, but, in truth, it may of been one of those things that my mind might of skipped as no consequence to me.

    Just an opinion. By the way i enjoy all of the writers' articles and look forward to reading them all.

  • Mary Degenkolb said:

    Nancy,

    As for the magnet effect, it works in reverse for me. I do not know anyone else with MM in my home town of Hinesville, Georgia. But my daughter moves back here after being gone for 7 years (she wears a MM bracelet for me) and everyone who knows someone or has family with MM is introducing themselves to her.

    This is weird due to the fact that this is a military town, and I worked full time in a furniture store dealing with customers everyday. I too wear a MM bracelet, yet no one ever told me about anyone with MM.

  • Randy Strode said:

    I have one more possible explanation for your experiences Nancy. I personally believe that, no matter what circumstances we may be going through, God puts people into our lives at just the right moment that we can witness, share, encourage, or whatever else is needed to make that person's life just a little bit better through us! And in doing so, make their suffering, anxieties, fears, or anything else they are going through easier to get through also.

  • Nancy Shamanna (author) said:

    Thanks for your nice postings, Marvin, Mary and Randy. You are probably right -- we are more focused in and acutely aware of all things myeloma now. A series of coincidences can seem like ESP, but more likely just coincidence! I find that the more time I spend with this diagnosis (thankfully, I have had the time thus far), the more involved I get with the whole topic, and the more people I meet online and in person to have discussions with. It's good we have the online experience, as well as meeting people in person, to share and grow in knowledge and understanding. Best wishes to all of you!

  • JJ Shaughnessy said:

    I am a physician myself and anecdotally, if not officially yet, it seems that the incidence of multiple myeloma is rising. My boyfriend, my accountant, an acquaintance, and several of my own patients all were diagnosed with it within the last year or two, this after not seeing many cases of it since medical school and residency 25+ years ago.

  • Nancy Shamanna (author) said:

    Wow, JJ Shaughnessy, that is a lot of patients and friends to have diagnosed in one year! If you are not an oncologist, but are in another specialty, that seems too many.

    I have been involved as a patient for almost five years and also when I was diagnosed everyone who had any connection to myeloma told me about people they knew with it. At the time, that was very disheartening since many had not survived. Five years ago was before when Revlimid was introduced, and Velcade was only introduced about 6-7 years ago. Survival rates seemed to be quite low. What I noticed was a watershed of change. More people have survived the diagnosis, as I have, but of course others not. Now, what I am hoping for is that the newer drugs will be approved and adopted by the provinces. There are other issues of advocacy too which could be addressed here.

    Would you have a theory as to why myeloma rates are rising in your area?

  • Randy Strode said:

    Every doctor that I have seen from my PCP to my oncologist to the myeloma specialist keeps asking me if I was exposed to chemicals. Other than farm chemicals over the years, I can't recall any. Of course, drugs are chemicals, and I have been around them for 45 years as a pharmacist. The incidence does seem to be increasing and at younger ages. Maybe we are all exposed daily in our environment more than at any time in history.

  • Nancy Shamanna (author) said:

    Hi Randy, Farm chemicals, both pesticides and herbicides, have been implicated in cancers. Perhaps the most well known that way was 'Agent Orange', a defoliant. it was used in military, agricultural and even other uses such as clearing brush away from railway lines!

    I think that in the 'first world' we have greater awareness of these carcinogenic chemicals, but world wide a lot more work needs to be done to diminish their usage!

    I have read recently that in parts of Asia the air pollution is so intense that it is a health hazard.

    Hope all is going well with you though! Modern medicine is capable of helping us cope with having myeloma! I consider that my own recovery is a sort of miracle, actually!

  • Tabitha Burns said:

    Thanks for a thought-provoking article Nancy. I too wonder if more people are being diagnosed with the disease, or if I am just more aware of it because of its impact on my life. It also seems like the ages of patients are getting younger and younger at the time of their diagnosis. My husband was in his mid-late thirties when he was diagnosed with SMM, and I have read of others much younger than that with full blown MM disease. It's so sad. I hope that if it is a direct result of an environmental agent, that we can stop its use soon.

    As for me and my husband, we have cut out all herbicides, pesticides and unnecessary chemicals in our lives. We try to go the organic route as much as possible.

    Well wishes to you!

  • Nancy Shamanna (author) said:

    Thanks Tabitha! I am sorry to hear that your husband was diagnosed with SMM at a young age, but at least he was diagnosed early and thus has a good chance of doing well with MM.

    I just got totally paranoid about the usage of chemicals after my diagnosis and thought back on all the times I had been exposed to carcinogenic chemicals, which I think was quite often actually! I do buy organic food when I can, since I think that supports an industry which is trying to make a difference in our environment.

    Some of the instances of carcinogens poisoning us and our natural world are well known, and have been dealt with as best we can. The rates of lung cancer are apparently going down due to regulations regarding smoking indoors and also a high tax being put upon cigarettes, and graphic warnings being printed on the packaging.

    Also, the use of the pesticide 'DDT' (dichloro biphenyl trichloroethane') was banned, at least in some countries. This chemical was affecting the egg shells of predatory birds at the top of the food chain, such as peregrines and bald eagles. The fact that we have seen a comeback in those bird populations is a tribute to awareness of environmental hazards. I have seen hawks and eagles in greater abundance here in my city more than I ever did in my childhood, and yet our city's population is now 10X what is was then.

    This is 'Earth Week', so I guess it's a good week to consider Mother Earth and how we treat her!

    As awareness increases, there should be decreases in diseases. It's not that we don't need herbicides and pesticides in order to grow enough food for the world's population, it's just that they should be safer for the environment, including ourselves.

    We older patients may be getting sick due to an accumulation of toxins in our systems that have built up over a lifetime. It would certainly be nice to see rates of myeloma decrease, but with the advances in detection, probably more cases than before will be discovered. It could take decades for all of this to get sorted out, and hopefully in the meanwhile we will continue to monitor our environment for potential carcinogens, avoid them with appropriate safety gear, and phase out their use.

  • eaj said:

    Hi Nancy,

    Since you were diagnosed with MM, I have been really surprised by the prevalence of cancer diagnoses among our friends and neighbors. We were exposed to chemicals – the herbicides the city sprayed on our nearby parks used to make me ill for days. Almost every friend of mine has some sort of cancer. I also think that radiation from Chernobyl would account for increased rates of cancer and our province did get radiation from it as did the rest of the northern hemisphere. Now would be the time to see more long-term cancers from lower levels of exposure than those at "ground zero".

    I really enjoyed your thoughtful article above. I think there is a a tremendous increase in the incidence. I find it interesting that there is "smouldering MM". Let us hope that children and grandchildren don't get exposed to as many toxic chemicals as has our generation. In my family of 5, 2 people had "one in a million diseases" – that seems ironic to me!

  • Nancy Shamanna (author) said:

    Thanks EAJ, you are a dear friend and we have had lots of nice times out bird watching and enjoying the natural areas in the Bow River valley too! Lately saw some swans flying north! Its sad to think of friends who have had cancer and other serious illnesses. It seems to be an epidemic coming on as we get older. I also hope that we can get improvements for the next generations, both in terms of better treatments available and also in decreasing risks for our health that are controllable.