Skip to main content

Plugging Multiple Myeloma

I had a wonderful conversation with a new friend on the trials of myeloma, and it was interesting that we’ve both experienced to some degree the nonchalant reactions when faced with our disease.
The saying to walk a mile in one's own moccasins could never be far from the truth, sometimes you get the feeling that no one cares or your cause and or experience is not of interest...., or better yet taken seriously....

I'm reviewing various sources to promote Another Face of Multiple Myeloma, and after extensive research I found there a not many books on patient related experiences, which I find odd, with the exception of popular myeloma blogger Pat Killingsley, I found just two other personal stories from author's penned memoirs on myeloma, and one unfortunately passed away and the other I'm desperately trying to gather contact information.

I was in the process of working with a top myeloma foundation to present my book to readers that could possbly relate to my experience, and in a nut shell told that there's a review process and at this time they are not considering reviewing author's works- well excuse me but I may not have time when they become ready.
I find of all visible resources out there's very little books on personal reflections, why are we not seeing more direct patient stories who are going though this? I don't know if I can truly answer the question,as I'm still perplexed by it, but I do know .... Another Face of Myeloma is not just my story but the story of so many who may be trying to plug and display their personal experiences with multiple myeloma.

Mad About Myeloma is a movement- and not just for one individual facing mm
but for many. I welcome any new author's who have penned their works and want a forum to display. I'm opening the door to feature these such writers such as myself here on this blog- please spread the word and get back to me...

madaboutmyeloma@gmail.com

Best
Yolanda
Another Face....



Comments

  1. Absolutely. We should be shouting about it! I'm blogging my experiences too (dialmformyeloma.blogspot.com) and wondering how we get this mad mad corner of human experience to be more visible and better understood. Good on you for writing a book - maybe one day I'll do the same.

    ReplyDelete
    Replies
    1. Hi Alex,

      Thank you for replying! I love the name of your blog and your blog is cool.
      Yes, I don't think we're as mad as we should be....There's too much going on in life to have this mm screw all of our lives normal activities, and on top of that having people think this cancer is not relevant. Thank you for joining in on the chat :)
      Yolanda

      Delete
  2. You might want to contact Bob at Deludia as he has published his book on Amazon... I read it and it's more memoir than MM, but very interesting. That is an option. He posts on this form and also on Facebook.

    ReplyDelete
  3. Hi Sandy

    Great info- his information didn't come up on Amazon as a general Multiple myeloma search- appreciate it!

    ReplyDelete

Post a Comment

Thank you for your positive comments....

Popular posts from this blog

Out of Commision

Hello Fellow Readers, Excuse the short absence. I was ill with some kind of strange viral infection- that no one knows for sure what it was..... This was one time I knew for sure MM was about to be the death of me! What started off as a quick turn sore throat to losing my voice in 1 day, to an ear infection the next day, to horrendous back spasms- i cannot tell you how much pain i was in. Now this may not have had anything to do with MM, but the back spasm and me crawling and dropping to the floor due to the pain.... I cannot tell you how crazy the experience has been. My concern was even more intense with the back spasms, as it was at my lower spine, where I already have small indications of lesions, so you can imagine how scary this was. I recovered from this, but hope there was no damage done, but my practioner assured me if there was fractions, I would not be about to bend and do some of the tests he had me do. I'll need to share this experience with my oncologist in th...

My Story is Your Story.... Or Is it?

Okay, it's clear those with mm have experienced different journeys than others, whether doctor care, medicine faux paus, infections, lesions, renal issues, anemia, Thrombosis, or no signs of  lingering harsh effects at all. My pain in the $#^ with myeloma as of this Tuesday April 23 is just the slight uncomfortable discomfort ever so lightly in the lower chest area, like someone gave me a hard push in the chest, or the slight pain at the lower back, where the lesion is being watched once a year with hopes it doesn't act up and calling for treatment. My only treatment thus far has been radiation at the chest sternum, and me hoping my skin turns back to normal, well 2 1/2 years in, I've realized this isn't going to happen! Radiation burn is just that a horrible burn! Health coverage - no issues yet, but than again I'm not on medicine so not sure of the bull that comes with having to be medicated for a specific amount of time. Bone marrow transplan...