Don’t Despair

Sixteen years ago when I was forty-five years old and diagnosed with Multiple Myeloma (bone marrow cancer) I was told that it was an incurable, terminal cancer.  I was also told that I would be lucky to live for three more years.  But after some serious chemo, a stem cell transplant using my own “cleaned up” stem cells and more maintenance drugs I have survived way past my initial expiration date.  And I think my doctors don’t quite know what to do with me!

With all of the great work being done around the world, they have developed several new drugs and therapies so that now they tell newly diagnosed patients the life expectancy is more like five to seven years.  And truth be told, with all of the new drugs “in the pipeline” there is a now a reasonable hope they might find a cure for Myeloma sometime in the near future.

While this sounds all well and great, if you have recently been diagnosed with Multiple Myeloma it is easy to fall into the black hole of “I have cancer.”  And you do and it is terrible.  But don’t despair.  There truly is hope.  Talk with your doctor.  If you don’t feel like your oncologist is up to speed on all the newer treatment options, then find another doctor who is.  Go online and find people in your area that have Myeloma and see what they think of their doctors.  Do not waste time worrying about hurting your doctor’s feelings. 

The International Myeloma Foundation has an amazing web of support groups across the country.  Track down the group nearest to you and reach out to them:  https://www.myeloma.org/support-groups

You HAVE to be your own best advocate and look out for yourself.  While Multiple Myeloma is not necessarily the imminent death sentence it used to be, it still is not a walk in the park.  It seems to me like it is now all about trying any and all treatments that are available to buy time while they continue to work toward finding a cure.

And at the same time, making the most of the time we have been given!

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