If you have myeloma and did not know Barbara Hammack (Boogie Barb), she was a more than 20 year survivor of this disease, and a member (no the heart) of the acor listserve.  She has been a contributor on this patient to patient forum and was treasured for her compassion, kindness, caring, and a beacon of hope for all who asked for help.  I along with a lot of myeloma patients will miss her optimism, and caring nature, and yes shed a bundle of tears at her passing.  She can not be replaced and yesterday was a sad sad day for the entire multiple myeloma patient community,  and of course to her loving daughter Debi and family.  Barb was one who made the statistics look silly, and even though we seldom saw eye to eye on this one subject, I always was in awe of her humanity. Barb was LOVED and will be missed by all.

One of her very last contributions to the listserve was a thank you to everyone on the listserve for their kind words about her recent troubles, and a request that we not CLOG up the list with these emails, but keep about the business of the list.   An example of her caring and compassionate nature can be witnessed in one of her quotes that one member of the listserve offered up as her very favorite "Boogie Barb" post.  The post was as follows and was an answer to a myeloma newbie who was afraid the question they were asking might be too elementary for the listserve:

NEVER be afraid to ask this group anything!!!  But also understand  thatfor some questions...such as yours...there isn't a solid answer.

How/when will we begin our final descent?  Many of us will relapse  slowly...with our various blood counts going up a little each month until it  clearly shows increasing activity.  We may or may not have any symptoms at  this time, and hopefully our oncologists will help us decide when it's time for  treatment.  That treatment may or may not work.  If treatment doesn't  work, there are probably more to try.  Eventually, nothing will work and  with our families, we'll have to decide when it is time to begin letting  go.

Others may suddenly develop kidney problems or break a bone or have spine  pain.  This could mean a more rapidl decline, and may be harder to  treat.  But, again, there would be every hope of getting past this crisis  and doing well for many more years.

Part of YOUR answer should be based on your own history with the  disease.  Were you diagnosed with the myeloma raging in your system?  Was it hard to get this under control?  How many different treatments have  you been on?  Have you "failed" them by the disease coming back  quickly?  These are some of the questions that can determine how aggressive  your disease has been.  What's your quality of life like now?  How  have previous treatments been on your QOL?  Can you picture yourself  continuing to fight this disease or do you feel simply spent?

From everything I've learn in over 20 years of dealing with myeloma is that it is one difficult disease to pin down.  There are so many  scenarios.  I've seen some of my myeloma friends die peaceful deaths after  many years of 
controllable illness; others have progressed quickly.  There  just isn't a true answer to the questions that you - and everyone else on this  list - really want to know, which is basically, "What the hell will my future be  like and when and how will I die?"

If anyone on this list HAS answers to those questions, I will happily  defer.  But because definitive answers are impossible, that's why this  whole "live each day" stuff becomes a true goal.  Of course we all think of  what's in our future regarding myeloma but life can take many curves we just  can't comprehend.  Take me:  Two weeks ago, I finished my final round  of velcade, having finally achieved that illusive "complete remission" with no  evidence of disease in either my blood work or my bone marrow.  Hurray!!  But three days later, my oncologist called me into his office to  tell me I had developed "myelodisplasia symdrome," which can be a precursor to  leukemia and often develops in people who have been treated for other  cancers.  Indeed, all the treatments that have kept me going for those 20  years, were probably factors causing this new problem.  

Right now, all I  can do is "watch and wait" BOTH the myeloma and the MDS.  Some  remission!

So, that's why "live each day" becomes the only way to live.  I've  moved on from my initial horror with the new diagnosis because I HAVE  to.  I've gone to a nearby beach, been back in the 1st grade classrooms  where I volunteer and get lots of hugs to make these days special.  And  yeah, of course, I sat around stunned and pissed as hell, but at some point, I  had to just let it go.  IWhat I know is that the sun will come up  tomorrow.  I could choose to stay in bed; paralyzed by my fears, or get up  and try to have a decent day.  I'll have lunch with my best friend, and  spend time with my daughter.  Should be an okay day.  What will my  days be like in a month?  Haven't a clue.  I just know that whatever  happens, I'll find a way to deal with 
it.  In the end, most of us DO.  I know folks on this list who have endured incredible journeys and I am in awe  of their ability to still find joy.  I strive to be like them, and like so  many of the senior citizens I worked with years ago, who showed such resiliency  in the face of tragedies.  We endure.  Maybe that's the only answer I can give you.  As a minister once said,  "What we fear, we will endure."  I hold those words with me as I continue  sailing in uncharted waters.  

Sail on, and keep hangin' in.

Barb,  may you rest in peace and keep hangin' in with the Lord, and recognized your passing is painful to so many that you have touched.  Good Bye Barb/Gary Petersen

Dr. Ravi Vij,  Cure Talk Panel Myeloma Expert, Associate Professor of Medicine, Washington University School of Medicine, St. Louis, MO.   Dr. Ravi Vij will be headlining an on line discussion on the latest discoveries and research for multiple myeloma.  Also on the panel will be Pat Killingsworth (myeloma patient, advocate, and author), Lori Puente (caregiver to Dave and myeloma blogger), Nick Van Dyk (myeloma patient, humorist, and blogger), and myself Gary Petersen ([email protected]).  There will also be other members of the panel.  You will be able to log in and ask questions of Dr Vij.  Dr Vij was recently awarded the MMRC(multiple myeloma research consortium), 2011 MMRC Center of the Year Award. The MMRC is one of the two best multiple myeloma organizations in the world and has already raised over $160 million dollars for myeloma research.  As you might surmise the research efforts follow the money, and their efforts have and will continue to "SAVE LIFE".  Please do sign in to participate in this LIVE panel discussion, I think it will be very informative and lively (given the panel membership).  You can sign up at the following web site:   http://trialx.com/curetalk/wp-content/s/index.html   Hope to hear from you at the live meeting.

 P.S - Now that the broadcast is over and recorded you can hear it at :  http://trialx.com/curetalk/2012/08/thank-you-for-your-support-myeloma-cure-panel-talk-show-team/ 

With your help we can "SAVE LIFE"/  [email protected]

The IMF(International Myeloma Foundation) www.myeloma.org and the LLS(Leukemia, Lymphoma, and Myeloma Society) www.lls.org , both have support groups for multiple myeloma patients.  The locations of the current chapters are listed on their web sites. The meetings provide information on treatments, advise, support, and updates on the newest clinical trials.  You create friend ships and this support provide a very positive atmosphere for the patient and there care giver.  

Anecdotal evidence would indicate that these groups do have a life expectancy that is much greater than the average of the the multiple myeloma patient community.   Pat Killingworth a multiple myeloma activist and author has stated in his blog that his support group has a life expectancy much greater than the average.  I belong to a support group and we have lost 12 of our 36 member is the last 4 years, and if we had an average life expectancy of 4 years as reported by the National Cancer Institute our group would have lost 18 members or 50%.  If you do the math our group  has a life expectancy of  6.0 years.   This is 50% better than SEER and I am so thankful that our group has been  better than average.  Why are we better?    We have great leadership, we support each other, we refuse to let our members accept substandard care, we are very knowledgeable about this very rare blood cancer, we usually find or have a myeloma specialist on our team, and each member and their care giver is resolved to "BEAT the BEAST"!  

I am developing  more substantive data to support this thesis, and have sent a letter to the IMF(International Myeloma Foundation) support group leaders for their participation.  This request has resulted in 9 responses, that in my opinion support this thesis.  I will be updating my blog with the results in the near future.  

Find additional useful information by going to www.myelomasurvival.com .

Together we can "SAVE LIFE"/ Gary R. Petersen