53!

Yep, today’s my birthday. I’m 53 years old! 🙂 I feel a bit like the puffin in my current header photo (by the way, I took that photo at Skokholm Island, Wales, UK, last week) — young, happy, confident, strong, with my wings spread out…and with a bunch of sand eels (er…bleah) in my beak…

And to think that when, in the fall of 2005, I was diagnosed with (smoldering) myeloma, I thought I’d be dead within four or five years…That’s what my hematologist told us…

I guess I’ve proved him wrong, eh? 😉

Back then, in 2005 that is, I didn’t know much about myeloma, except that it was incurable. The statistics were really scary…and, almost ten years later, they are still scary. It was only years later that I realized statistics are useful ONLY in certain contexts (medical conferences, e.g.), but to us, individuals with myeloma at any stage, they are essentially useless…We are human beings–not numbers.

This became even clearer to me after reading Stephen Jay Gould’s famous essay on cancer and statistics, “The median isn’t the message” (worth reading again from time to time…you can look it up easily online). He was diagnosed in 1982 with mesothelioma cancer, which has “a median mortality of eight months.” As he points out, most of us would interpret that as “I am going to die in eight months.” That is not the case. The reality is that statistical distributions “apply only to a prescribed set of circumstances – in this case to survival with mesothelioma under conventional modes of treatment. If circumstances change, the distribution may alter.”

If circumstances change, the distribution may alter. Indeed.

Stephen Jay Gould didn’t die eight months after his diagnosis, but TWENTY years later — in 2002.

Based on my numbers, I should have progressed to active myeloma four years ago. This is not a wild guess on my part: in 2005 a famous Mayo Clinic myeloma specialist told me I’d have to begin conventional treatments in 2010. Based on statistics, of course.

But it’s 2014 now. So I guess I’ve proved him wrong, too, and I hope to keep proving him wrong in the years to come…

Anyway, it’s already a very hot day here in Florence, Tuscany, Italy, and it’s going to be boiling outside this afternoon, so I’ve decided to take the day off, lie in bed with my cats (under the cooling ceiling fan), watch movies and eat cake from our favorite local pastry shop, the best in town, in my opinion. And this evening, more movies and more cake (and pizzaaaaa!) with my Stefano…

What more could a girl want? 😀

6 Comments

  1. Hi Margaret,
    Happy Birthday!!!
    Have a great year and many many more to come! You have given us so much hope, information and courage all our combined good wishes are with you.
    God Bless
    Vijay

  2. Happy birthday Margaret! You are such an inspiration to us all!
    Wishing you many, many more years of stability and good health ahead! ????

  3. Hi Margaret
    Many happy returns on your special day and a huge huge thank you for all you do.
    Your website has been a huge revelation, source of knowledge and comfort since finding 2 years ago on diagnosis of SMM at 57.
    Adopted both your curcumin protocol and TAB’s additions and is working for me, fortnightly blood tests now out to every four months.
    No more night sweats, leg cramps, shortness of breath, nose bleeds and general malaise.
    Quality of life could not be better. All attributable to finding your blog site.
    Have a wonderful birthday with many many more to come.

    Very Best wishes
    Noel (in Oz)

  4. Hi hope you had a great day .I am 53 also, I was diagnosed will SMM last October .My doctor wanted to start me on Chemo Two months ago ,I had just stated curcumin 8gs a day so wanted to wait a bit longer to see what it could do .I was feeling well so we both agreed to wait .Two months later and my bloods are looking much better my doctor has agreed to leave things the way they are for now . I eat a very healthy diet ,Drink green juice , meditate and take supplements, I am feeling great so happy I found a better way to deal with this cancer . And thank you so so much for your Information and website I am so sure the curcumin is making a big differents .Cheers Corrina

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