Day 76-As the snow continues to fall......

The kids are finally on the school bus heading for school.  We have received over 4 feet of snow in the past 3 weeks! The snow is so deep Mike actually snowplowed a path around the house for Flower.  That's true love!   The snow is up to our windows and we can barely see the street.  We live in a wooded lot so the trees look absolutely beautiful all painted with snow.  We have so much snow on our road, that soon I am going to just have to pull out the snowshoes to walk the kids down to the bus stop.  The snow is still falling this morning and we have another storm on the way on Saturday!   I must admit there is something pretty special when the world stops, and everyone is snowed in.  It forces us to slow down.  The past couple of days was spent with my house full of my own kids and friends.  We had sleepovers and wine with our grown up friends all during the school week (how fun and spontaneous)!

While snowed in I was also waiting for a call from Dana Farber with results from my labs that were drawn last Thursday.  I was specifically waiting to hear what my M-Spike number is.  Ready for a little lesson: Multiple Myeloma cells produce excessive monoclonal proteins.  The monoclonal proteins are also known as M Proteins and can be detected via protein electrophoresis, a process that uses and electrical current to separate the various proteins in a sample of blood.  The M protein level is referred to as the M -Spike.  In myeloma patients the M protein is most commonly IgG or IgA.  In my case my protein is the IgG.  Ok enough of the medical lingo, basically this number will indicate how effective the treatment and transplant has been.  Doctors are very cautious and rarely use the word "remission" when speaking about Multiple Myeloma.  As we know, currently there is no cure.  Therefore the goal is to reach a "complete response" from treatment which will hopefully last for several years without a relapse.  A complete response is reached with the M-Spike is at zero.

In June, when I was first diagnosed my M-Spike number was a 2 .0  We got the number down to 0.71 after my 4 Revlimid/Dex, and Velcade treatments.  By the end of October prior to my stem cell transplant we achieved an M-Spike of 0.39.  My doctor was very pleased with this number and was very optimistic that I would achieve a complete response after transplant.  Last Thursday all my other numbers looked terrific.  My immune system has fully recovered about 25 days ahead of schedule.  Which means no more wearing a mask!!!  I also got the thumbs up to start eating fresh vegetables and fruits again.  Bring on the salads and smoothies!   My doctor also once again expressed that he would expect my M-Spike number to be very close to zero based on how well I have recovered.

Well, this gave reason to celebrate!   Mike and I got a babysitter for Saturday night and decided to go out to one of our favorite restaurants in Nashua.  I was finally going out!  The last time I went out was November 14th, so it had been a while.  While Mike was downstairs with the kids and the babysitter, I was upstairs trying to decide what to wear.  Well, an hour later, I was still not dressed, my closet was pretty much emptied out on my bed. Mike came upstairs and found me in tears.  How was I supposed to go out on a date with my husband when I felt so ugly?  None of my clothes fit me the way they used to, I'm bald and I barely even have any eyelashes.  Seriously?  I needed a total makeover.  At this point eating a pizza at home had more appeal than going out in public.

Mike gave me a big hug, reminded me of how far we have come and helped me pick out and outfit and pretty bandanna.  He knew how hard this was for me.  When we got to the restaurant there was a 45  minute wait.  So we walked into the bar to wait and have a glass of wine.  As I walked in, I felt the eyes staring at me and the look of sadness on everyone faces.  I hated all the attention. Can't I just blend in?  We sat in a corner and Mike made a special effort to keep me distracted.  But when we finally got our table, my eyes filled up in tears.  It was so overwhelming sitting there.  Every woman around me looking pretty and feminine.  I felt like I have been stripped of that.  I almost felt like I just landed from out of space.  I felt like I didn't fit in.  Everyone around us was enjoying a night out on a Saturday night, like they probably do every weekend.  It had been so long since we have gone out, my emotions took over, the hot flashes started up and I just felt like running out of the restaurant.  Mike poured me a little more wine and I began to relax a bit and enjoyed dinner.  Although we were home early (by 10) we did it.  We actually went out.   Baby steps.....right?

I finally received a call from a woman form the doctor's office.  She informed me that my M-Spike was 0.30.  How could this be?  I went through the most toxic dose of chemo that wiped my white blood cells to zero, had a stem cell transplant....and I only dropped 0.09.  What the heck?  Talk about a buzz kill.   My heart sunk with disappointment and my mind began spinning out of control.  Did this mean that the whole transplant was not effective?  Unfortunately the woman had no answers for me and I was told the doctor would call me within the next 24 hours.


Dr. Munshi finally called me yesterday to talk over the results.   He knew from my voice that I was discouraged.   He anticipated that I would be in a complete response and I really wanted to believe him.  Unfortunately I had a fairly good "Partial Response".  The number is moving in the right direction (down) just not as quickly as we would like it or anticipated.    I am not a very patient person especially when it comes to something like this.  I have been a "perfect patient" doing all that I am expected to do, following all the instructions and  I am only getting a satisfactory result!

  I begin 2 more cycles of chemo beginning on Valentine's Day.  So I am trying to psych myself up to get ready to be poked again, and have the great side effects of chemo and steroids.  Hopefully my body will tolerate it well.  As we know, every cycle is different.   The plan is  to complete the 2 cycles and then in 8 weeks I will go back to Dana Farber for more tests and another Bone Marrow Biopsy.

 It was a challenge explaining to the kids what a "partial response is".  This is going to be a long journey,   As my mother-in law explained to  me the other night, it is a like a dance.  One step forward a few steps back.  The key is to try to stay positive and keep taking those steps forward.  Please keep me and my family in your prayers.

Stay warm and safe and savor the day!

Love,
Jeanie