In Like a Lion, Out like a Lamb

      I didn't get around to writing a blog last week because we were in the midst of the bathroom remodel.   We are so grateful that his brother was able to come and was willing to share with us his skills and his time.    The bathroom turned about amazing!   It's hard to explain how much of a difference that having a shower where he feels safe will make.   It is a huge blessing, that has already added some peace of mind and relaxation to his life.   His sacrifice and hard work on our behalf is something we will think of every time we take a shower.  I've still got to finish painting and add all the finishing details, so you'll have to wait for a full before and after picture but here's a picture of Fred's amazing work.

      Aside from chemo, the main thing that has been on our appointment list was the bone marrow biopsy on March 1st.  They did it up high up on his femur and were able to get the samples that they wanted.   There isn't anything that they can do do to numb bone and Chris said it was the most pain he's ever felt, but they were astonished at how despite the pain Chris was able to stay still.   His last one was on Halloween, but he'll likely have to have one every three months.  
       The results have come back in we're waiting to hear from Dr Sborov the interpretation.  There are many things that they use to monitor his myeloma and many of them we do not understand, this is one of them.   The bone marrow biopsy has a few tests, one of them is called a FISH panel (fluorescent in situ hybridization).   "FISH can be used to look for specific changes in chromosomes.   It's very accurate and because cells don't have to grow in a dish first, results are often available within a few days".  (To read more about Myeloma Testing Visit Cancer.org) 

Here are a few of the things that come back on his FISH results:

1q21 (CKS1B)
9q34 (ASS1)
11s13 (CCND1)
14q32 (IGH)
15q24 (PML)
17p13 (TP53)

    Another test is called Immunophenotyping and gives us results involving these and many more:
%CD28
%CD200
%CD46
%CD45
%CD19
%CD20
% Cytoplasmic Kappa
% Cytoplasmic Lambda

     They say that being treated by a myeloma expert can make a very big difference in the life expectancy of someone with myeloma, now you can understand why. 

      It was nice with everything going on the past two weeks for me to also have visitors.   My parents were kind enough to come by and bring some tools that Fred needed.   I also enjoyed breakfast with my Aunt Shari the day of his biopsy.   It was something that we did before his diagnosis and it was so nice to have some "me" time.   My brother, sister-in-law and niece also stopped by for a short visit.   They had been sick, so didn't come in to visit Chris and it was wonderful that they were sensitive to the fact that Chris's immune system is weakened (and pretty much always will be) and didn't want to risk getting him sick.

    March also is Myeloma Awareness month.   It is represented by a burgundy colored ribbon.
      In 2017 there were approx. 30,280 people in the US diagnosed and approx 12,590 lost their battle.   In comparison Breast Cancer which had approx had 252,710 cases and 40,610 deaths.    (Cancer.gov)

    A year ago I don't recall ever hearing of multiple myeloma, now it has consumed our life.   It's a roller coaster full of emotions and while I strive to remain in control those emotions, I am always but one thought away from tears.   Our hopes and dreams for the future are simply that we have one together and that somehow Chris can beat the odds.   It's hard not to think of the many difficult things that may lay ahead of us, it's a terrifying road.  They often say to take things one week, one day, one hour, one moment at time whatever you must to make it through.  Myeloma is unpredictable and for me, someone who likes to be prepared, it's hard not to be able to plan, but part of being brave is doing what we must in the face of trials to survive.  It's letting go of the things we wish we could do and embracing what we can.  Yesterday Chris was feeling well enough to be able to run errands with me and enjoy some beautiful spring weather.   I treasure our time together.  Despite all of his battles he inspires me everyday and makes me feel so loved.