When, in early 2006, I told my best friend that I had progressed from benign MGUS to the, er, less benign condition of SMM, or smoldering myeloma, she didn’t look shocked or tell me she was sorry or burst into tears (all of which I deeply appreciated!). It’s not that she didn’t care, of course. She is just a no-nonsense, positive-thinking person. And she almost immediately remarked, “You know, I think A. has something like that, too.” “Really?,” I answered, surprised.
And so we began chatting about A., who has been her closest friend since they were in the same class in high school…Well, it turned out that my best friend was right: A.was diagnosed with MGUS when…get ready for this!…when she was in her 20s. Since she is now in her mid 50s, that means that she has had MGUS for more than half her life…
This is actually my second post about A. My first post dates to 2007, when she swam across the Strait of Messina: http://margaret.healthblogs.org/2007/08/06/swimming-across-the-strait-of-messinawith-smm-an-inspiring-story/
There is more to this story…
A few years ago, A. had breast cancer and went through a number of chemo treatments, which didn’t, however, have any negative effect on her MGUS. Her numbers remained stable. And I am happy to report that I saw her test results last spring: they were excellent. In fact, her numbers place her in the MGUS, not SMM, category.
In case you are wondering, no, she still cannot interpret her own blood test results. She relies on her haematologist for that. As I said in 2007, some people are better off not knowing too much about…things…
But wait…why am I writing about A. again today? Well, mainly because every so often I receive private messages/blog contacts from people who have been recently diagnosed with MGUS and SMM and are scared of progressing some day to active myeloma. Well, to be honest, that nagging little thought is in the back of my mind, too. And sometimes, especially when I become aware of a new ache/pain, the notion that it might be caused by myeloma manages to push its way for a nanomoment to the front part of my brain. Then Reason and Optimism take over and push that notion back where it belongs…
That back-of-mind thought is why my research and my blog are so important to me. I receive many private (and public!) thank-yous and compliments, which are all very much appreciated…but the truth is that I do all this reading and research mainly because I am fighting for my own life. I am fighting to remain stable. And (why not admit to it?) perhaps I am fighting not to be scared…
Doctors tell us that there is nothing we can do. All we can do is “wait for the other shoe to drop.” I doubt they realize how disempowering that is…and how helpless and frightened and alone it makes us feel…
But hey, I am not going to sit back and just…wait. I am going to keep on learning as much as I can about this cancer. I am going to keep updated and test (on myself!) a few, scientifically proven, non-toxic substances, obtained only from reliable sources, of course…Oh dear, I’m so sorry…I digress, as usual! 😉
Another reason for today’s post is that I have had a few exchanges with a young woman who has recently been diagnosed with MGUS and is very VERY scared. She always gets severe panic attacks and even colic pains before going to the lab to have routine blood tests done. Oh, and sleepless nights, too. I have tried to be as reassuring as possible. But this morning I realized that, instead of reminding her of all the favourable statistics (= only a very small percentage of MGUS folks will progress to active myeloma, blablabla), perhaps the very best thing I could do for her and others would be to provide a few more details about A.
After all, A. is not a number. She is not a statistic. She is a real, living and verrry active, wonderful person. And she has become a dear friend of mine (one of my close, card-playing, laughing buddies, in fact).
Still with MGUS.
After all these years…
great story ,inspiring,uplifting,a reason to remain
Yes, with knowledge comes empowerment. By trying to understand the complexities of Multiple Myeloma, we take much of the mystery and consequent fear out of the equation. With fear comes stress, which is detrimental to our immune system.
A thorough knowledge of MM also helps with making treatment decisions. Often our medical practitioners are guessing as to the best way forward. We can help only if we take the time to understand the implications of the choices available.
:). or in English: 🙂
That’s also what I try to do: fighting to remain stable and not to be scared. Great Story.
You do such good work on so many levels, Margaret, and this was an important message for those with it, and those caring for those with it. Thank you..
Sei una persona fantastica!
Thank you Lord for giving us Margaret!
hi Margaret: I really believe that a lot more people have MGUS and never know about it – most blood tests don’t test for MGUS – mine was discovered during some tests about allergies – had I not had allergies, I would still be totally ignorant of MM – and I may never have gone to Firenze or left my job with all its office politics – hopefully the young woman you are referring to can stop being so anxious about it –
take care and good trip home – it’s freezing here – you will love it
Faz um bom tempo, que venho ler o teu blog com o Google Tradutor. Sou brasileira, moro na cidade de Porto Alegre. O que me chamou a atenção foi teu estudo sobre a curcumina.
Também, há 30 anos, quando pesquisávamos sobre reumatismo, o exame de proteinograma, mostrou pico de gamopatia monoclonada. Não encontramos reumatismo. Esse pico ficou em observação. Naquela época, não entendi o que seria este pico, o que foi muito bom, pois não desenvolvi o medo. Assim, me parece, que sempre tive esta predisposição.
Em 2000, recebi o diagnóstico de mieloma. Senti muito medo.
Mas os resultados dos exames radiológicos do esqueleto, da tomografia e da biópsia da medula óssea, foram negativos para a doença. Passei a fazer avaliações de sangue de 2 em 2 meses e agora faço uma vez ao ano.
Meu hematologista não receita nenhuma medicação.
Tomo medicação tradicional para colesterol e pressão alta.
Para osteoporose tomo, há 15 anos, Alendronato de Sódio ( bisfosfonato ), Carbonato de Cálcio mais vitamina D3 e há uns 2 anos foi acrescentado o Citrato de Magnésio.
Tomo sulfato de glucosamina.
Ainda tomo uma formulação para circulação de rutina, ruscus, castanha da índia e ginkgo biloba.
Procuro me alimentar bem, caminhar e tomar sol.
Estou com 63 anos e com mais de 30 com Gamopatia Monoclonada.