Thursday, August 29, 2013

August Myeloma Mom

My latest "Myeloma Mom" column is up on the Myeloma Beacon web site. I hope you'll go read it when you have a chance, but I suppose I should provide a warning first. The column is about my Aunt Margie, who passed away from myeloma last month. I compare our two cases of myeloma: Mine has always been tame and non-aggressive; hers was wildly aggressive and impossible to stop. In the column, I wonder how the same disease can behave so differently from one person to the next, and it dawns on me that this is why myeloma has proven so impossible to cure.

After the column was posted, I got a comment from the wife of a newly diagnosed patient, telling me the column was disturbing and gave her and her husband nightmares.

I certainly would never, ever want to give a newly diagnosed patient nightmares. I feel bad that I contributed to the stress she's feeling. The main reason I write this blog is to help newly diagnosed patients, to show them that it is possible to live for a long time with multiple myeloma and to live a good life. On the other hand, not every case of myeloma is like mine, and I think people need to know that, too. What Margie and her family went though was an absolute nightmare and shouldn't be ignored. I thought her story needed to be told to show why we need to find a cure for this disease immediately.

Anyway, if you're a newly diagnosed patient or someone who simply doesn't want to hear a myeloma story with a sad ending you might want to steer clear of this column for now. I totally get it.


Joshua Gulick said...

Your column is really well-written. I'm talking about this latest column, though I've liked the whole thing. Saying "liked" sounds weird, maybe "appreciated," is better. I think that column is probably very helpful to a lot of people.

Emily said...

I actually appreciated that you acknowledged that myeloma is still a fatal disease. With so many saying "They're curing this down in AK!" new patients can be easily misled into complacency, only to discover that it is not such a tame beastie. My husband had an auto-transplant Jan of 2012 and by Sept he was growing tumors again (though his mspike stayed at 0.0). The two newest drugs don't work for him (one didn't work, on he is allergic to) and he is allergic to Revlimid. Luckily, Velcade and Cytoxan are holding things steady right now. I just get frustrated when aggressive cases are whitewashed, so I appreciate your candor.

Anonymous said...

Not only is there a vast diversity in MM disease presentation. Leading oncologists think that the term MM is an unfortunate one-size-fits-all misnomer, because these different presentations are, in essence, different diseases. I for one - having (so far) a non-agressive form coupled with the medical advice that I will be living for a long long time - would prefer to be part of a different disease club: maybe the plasma cell spectral disorder club. So you are doing and saying the right things. People need to know about this (group of) disease(s) and the challenges presented.

Keith said...

Emily, you must be reading blogs different than what I have read. I read over 50 every other day and have found nothing about UAMS-MIRT curing Myeloma. I go there and am treated by Dr. B , one of 4 best experts in the world on MM, in my opinion. Opinions by bloggers is not false hope, it is largely an assessment of what they have experienced.

mark said...

Several people have recommended your site and thought you might be able to help. We have a site that caters to survivors. It allows them to store digital memories and then release them to their kids in the future.

Our founder recently lost a close friend who passed suddenly without warning and was again reminded of how quickly life can be taken away, at any age. He woke up one night with the idea of this site. He is a father of three and was thinking about the memories we want to keep forever - and how could they be stored, kept for the future, and delivered at just the right moment to have the greatest impact.

We are still in the “testing” phase and wanted to see if your readers would like to participate and get a complimentary membership.

We would appreciate if you could do a blog post and/or social media mention, informing them they can visit to register their email address.

From there we will update them when we are ready to start testing the site. Please let me know if you have any questions.

Mark Hollingsworth
Community Relations Director