Friday, November 9, 2012

It's the One Month Countdown...

Approximately one month from today I will be back at DFCI! I have been waiting and waiting and waitingggggg for December 10. Just about one month to go! I feel like I am in the homestretch.

Doesn't this sound like a great day?

9:45 Blood work / drop off 24 hour urine collection

10:45 MRI (I've been told the scan should last about 75 minutes or so)

1:30 Bone marrow biopsy and aspiration (!!!!!!!!!)

2:30 Appointment with a different doctor (my rheumatolgist) over at the BWH

However, really, the MOST important, critical day, will be December 18th - when I actually have my appointment to see Dr. R and I will get all the results - M-spike, urine analysis, MRI, bone marrow. I didn't want to have my appointment with him on December 10th because none of the results would have been finalized and that's obviously what I want to talk to him about.

After the July bone marrow fiasco, I want to have my results presented to me at my appointments when possible... not via email or on the phone and then end up having to make an appointment to discuss the results in person anyway. Luckily, there is the patient portal I can use to find out most of my blood work and test results before my appointment. But it always hides pathology tests so I can't see my SPEP and biopsy results.

Although...after careful consideration, I might email his secretary (God bless her, she hears from me a lot) the day before my appointment to see if she can send me the results of my biopsy and m-spike.

I know, totally cheating.

But, I sort of don't want to go into the appointment BLIND not having ANY idea what my biopsy or m-spike results are. I need to be prepared! And of course, I need to compose my list of questions. :)


  1. Dear Elizabeth,
    It is a good idea to have your results a while ahead of your appointment. It gives you a chance to interpret your m-spike, spep , total IGG and I hope they are running the total Kappa protein. And they need to run the Kappa/lambda ratios and the inverse of each to give you a perspective of where you are.... I apologize for just spouting off these inane lab stuff to you, but I have been dealing with this a long time..... I hope , sincerely that your m-protein has lowered and all other tests are level!

  2. Thanks, Keith! I always get a total IgG/IgA/IgM, kappa, lambda, and then K/L ratio, but I'm not sure about the inverse ratio...I'll have to ask my doctor about that!

  3. if you want to do a lot of research into this there is a website referencing the Freelite tests.
    it is called
    Freelight{Registered trademark} Serum Binding Freelight Assay test.
    It has some good reading and charts , etc. I , unfortunately, like to know too much and try to read up on this crap. I should have went to Medical school and took more Organic Chemistry. LOL

  4. Thanks, Keith! I may look into learning more information about FLC at some point. For now I know abnormal ratio = bad. I'll stick with that ;)

    Ha - I hear you, I definitely don't know as much as you and a lot of other people but I feel like I have learned so much over the last couple months. I'm started to speak the myeloma language which is totally crazy. I know way more now than when I was diagnosed 3 years ago...which is good and bad at the same time!

  5. Hey Elizabeth.
    You need to just live life.... abandon all self I often do! To my wifes' lament!