Dave Update- March 2, 2011

Jeana, Dave, Carol, and Cory at the MM Confernece in LA

No, they did not serve cocktails at the conference- we just enjoyed one the night before the event.

Hello family and friends, before telling you about the Multiple Myeloma conference we attended over the weekend I wanted to give you an update on Dave's overall health.  As you know, Dave has been experiencing a lot of pain (constant and very uncomfortable).  Most likely the pain is due to peripheral neuropathy and his doctor has had to try multiple medications to try an alleviate some of this pain.  Last week, Dave and my mom communicated to the nurse about the type of pain Dave is having in his hips, leg, and lower back.  The nurse questioned if there might be more to this than peripheral neuropathy.  Peripheral neuropathy typically forms in the hands and feet.  The nurse contacted the doctor who suggested an MRI.  No problem, right?   Unfortunately, getting an MRI is a problem for Dave due to a Stapedectomy he had done many, many years ago.  This is a surgical procedure done to the middle ear to improve hearing.  The piston-like prothesis that is placed in the ear is where our problem lies.  I guess this device, in combination with the MRI, can cause permanent hearing loss.  Dave was desperate enough due to the pain to take a chance, but the doctor decided to do a different scan that should get a better picture of what is going on.  The results show a little bit of a pinched nerve, but nothing that would cause the pain he is going through.  The doctor has changed his medication to a pain patch, upped his bone strengthening medicine, and will continue to monitor Dave's pain.  In terms of his numbers, everything looks real good.  He is still in complete response. 

In order to go to the Multiple Myeloma conference, Dave had to cancel an appointment he had in Stanford for the start of the stem cell transplant process.  It was important for him to attend the conference and Stanford felt there was no reason why he shouldn't or couldn't.  I completly supported this idea because I really wanted Dave to meet Dr. Berenson, who was going to be one of the speakers at the conference. 

I have been researching multiple myeloma from the day I found out Dave had it.  I want to be armed with as much information as I can possible get so I can be a support system to him and my mom.  In my research, Dr. Berenson kept popping up.  I read everything I could find on him and I was just drawn to him in general.  I don't know if it was: vibes, women's intuitition, or I'm just crazy.... but I felt something about him.  When I found out he was going to be there, I wrote him a letter and let him know I was coming and that I would love to meet him.  I received a call back from his office.  I guess the doctor was flying in from Paris, but they told me that they would be sure to give him the letter before the conference.  The caller also reminded me I was NOT a weirdo.  In my letter, I told the doctor that I felt it was meant to be that he was speaking at the conference that I would be attending after I had been following his research all these months.  I didn't want him to think I was some kind of stalker so I wrote, "I promise I am not a superstitous weirdo". 

What is unique about Dr. Berenson is that he does not utilize stem cell trasnplants and a part of his practice.  He relies solely on combinations of medications, individually tailored to the patient and closely monitored in amount and release time.  There is a lot of provocative conversations going on about the benefit and necessity of a stem cell transplant in the year 2011.  I must add though, the majority of doctors continue to believe that stem cell transplantation is a benefit and continues to be a part of their care plan for multiple myeloma patients. 

I know, I know... I've always liked the bad boys, the black sheep, the Mavericks!  I just can't help myself.  I was so excited to hear him speak and find out the latest in Multiple Myeloma research.  The Muliple Myeloma Research Foundation put on the event and it was well organized and along with Dr. Berenson, had three other highly regarded specialists in the area of multiple myeloma. 

I would say over 250 were in attendance.  I saw women, men, young, old, white, black.  Cancer does not discriminate.   I also saw young teens in attendance whose parent have the disease.   I had the opportunity to talk to a husband whose wife was just diagnosed and we talked about her experience.  I know that each of us at one point got to talk with someone and learn about their personal journey.

I really wanted to meet the doctor though.  The thing is-- and this will probably shock you--I am terribly shy.  I know what you are thinking, ya, right?  Seriously, I am!  I can talk to anyone for hours if they make the first move, but for me to go up and introduce myself.....ahhhhhhhhhhhhh.   Sadly, Dave had to all but drag me to meet the doctor during break.  Dave started talking and introduced us and said, "This is my daughter Jeana.  She has been following your work for awhile, etc. etc.  I can't remember most of what he said because I was getting nervous and anxious.  The doctor looks and me and says, "Brooks?"  I say, "yes".  I manage to get one question in before he gets whisked away. Funny though,  the very thing I wanted answered I got answered.  I told him that Dave's doctor believe that he has to do a stem cell transplant immediately because he has the 4;14 abnomal chromosome.  You see, the 4;14 chromomose is one of the most diffifcult to treat and makes Dave's cancer very agressive.  The doctor tells me, "No we don't do stem cell transplants at my practice." and most importantly, he tells me, "4;14 is nothing, makes no differentce."  I got this to mean that he didn't think just because Dave has 4;14 that stem cell transplant is his only option.  I wish we had more time, but... there were so many others who wanted to ask questions as well.  I wish I could have been more aggessive.  It's like I froze.  I acted like some love-struck teenager or even worse, some kind of multiple myeloma groupie!   Urggggg!  I vow to work on this!  During the question answer section, one of the speakers was talking about a revolutionary medicine in trial for the chromosome 4;14.  He asked if anyone in the audience has 4;14.  We raised our hands.  The president of the multiple myeloma foundation, Walter Capone, was sitting in front of us and gave Dave his card and asked him to contact him.  This was great news for us- and something Dave's local doctor previously mentioned. 

I think each of us left with even more questions.  I believe that is what it should be when you are talking about your health and your life.  You have to take control of the decisions that are going to be made and becoming informed on ALL options in a necessity.  Dave's doctor still supports Dave going through with the stem cell transplant and Dave is still leaning that way, but also looking at other factors like:  quality of life, time off work, and a million other things he could only share. 

I left this weekend loving my husband more for joining me, loving my mom more for the fun and supportive person she is, and loving Dave more for allowing me to "see: him.  And when I say "see" him I mean more than just seeing the good, but also letting me see him when he is in pain, when he is scared, when he is questioning, when he is frustrated, etc.  I just love "seeing" all of him.
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