Progress on the Cracking Backbone Front - 5/25/12

Today we had 3 medical events.  They were all positive, but we are still in limbo since we don’t yet have a positive diagnosis.

The first event was an infusion of Reclast.  Reclast is the brand name for Zoledronic Acid.  It is given annually for people with osteoporosis.  People lucky enough to have multiple myeloma (MM) get it monthly.  So regardless of the diagnosis of what I have, initiating this treatment made sense.  It is a bisphosphonate, whatever that means.  Somehow it helps to increase bone density and strengthen the bones.  The infusion happened first thing this morning, and only took about 25 minutes.

We had driven into Brian + Bridget’s house in Jamaica Plain the night before to avoid the traffic in the morning.  While talking things over with Bridget, Brian and Elizabeth (a physician’s assistant living on the 3^rd floor of their house), I testified how much I hated my back brace.  It hurts in several different ways, adding to chest pains, as it restricts my breathing.  Elizabeth suggested taking the brace to the representative of the company that made it who is on site at the BI.  So that is the second thing we did.  The fellow looked at it and said there were several adjustments that could be made, but he didn’t have the equipment to perform them there at the BI.  A company office across the street did have the tools, so we went across the street.  The guy there ended up taking an inch away from the armpits, where the brace had been binding.  He also removed an inch or more at the bottom where it was binding whenever I sat down.  The result was it rode up, causing an indentation that should have been just above my hips to dig into my ribs.  With that gone, I am sitting here with it on after a full day, and there is no problem.  He also extended a piece of plastic on one side to make it easier to get into and out of.  He was going to do the same on the other side, but we ran out of time.  Thanks to Bridget and Elizabeth, I am now MUCH more comfortable.

The third thing was to meet with Dr. Levine, a hematologist.  He specializes in blood disorders and blood-related cancers.  He also took a detailed history, probing for family members who had cancer.  There are quite a few of them.  Elizabeth and Brian attended this session, Brian because he was at the hospital to set up an operation to fix his shoulder and Elizabeth because she suspected that with her medical background, she would recognize and remember many of the terms that might just go over our heads.  Dr. Levine was also qualified to take a bone marrow biopsy, which is the definitive test for MM.  That he did, after doing a general exam and responding to a number of questions we had.  The bone marrow biopsy involves numbing the lower back over the pelvic bone.  In my case it was the left one.  Then they put in a fairly hefty needle to draw out some fluid from within the bone.  Getting through the surface of the bone involved quite a lot of pushing.  Dr. Levine commented that my vertebrae may be cracking at an alarming rate, but my pelvic bone was not very mushy.  Finally, they put in a larger needle and take out an actual sample of bone marrow.  This too involved a good deal of force.  It didn’t hurt because of the local anesthetic.  But somehow my body decided it didn’t like all that pushing and shoving, and suddenly I felt faint.  I was lying down on my stomach, so I had nowhere to fall, but I was told I turned quite pale.  Remarkably gray or white.  Soon they were all finished, and tidying up.  The nurse stayed with me for a while, concerned about my reaction.  She brought a cup of water and took my blood pressure.  It was down, but within normal range.  After a while, I perked back up.

The bone marrow biopsy now goes off to the lab for analysis.  That should take 7-10 days, so we are still in the dark as to what is happening to me.  We have an appointment to go back into the BI to see Dr. Levine next Friday, but especially with Monday being a holiday, that might get pushed off. 

So the mystery goes on.  I am to be religious in taking my pills that provide Calcium and Vitamin D, as that is what the Reclast is working with.  It is supposed to help build up the bone, but we were warned not to expect anything over night.  Healing bones takes multiple months, even years, and we still don’t know the cause.  More to come, ideally soon.