VGPR

I have been a very bad blogger of late. What with a baby shower for my daughter, a week in Naples, FL with good friends, waiting for a baby to arrive, my sister’s 50th birthday, working, maintenance therapy, dealing with this mop of hair growing on the top of my head, and did I say waiting for a baby to be born!?!

Well, today is the due date and we are still waiting. My daughter wants to have a natural childbirth so we are hoping this starts moving along in the next few days so we can stop worrying about induction. Did I say “we”? Well, as her birth doula, I am worried about this too!

Two weeks ago I went to Dana Farber to see Dr. Munshi, I had not been since October. He took a while fumbling with the electronic health record, but after going back and forth he finally said, “We would say you had VGPR.” I knew what this meant and it was what I was expecting, but my friend Alison was perplexed., “What is VGPR?”Well,  VGPR is a Very Good Partial Response. My m-spike decreased by at least 90% thus meeting the definition. So I did not have a complete response (or what some people might call remission), but I had a very good partial response. And my numbers could continue to stay where there are today for a long time and they cold also continue to go down a bit with the leftover effects of the melphalan (from the stem cell transplant) and the maintenance therapy that I continue. But as there is no “cure” at some point I will likely relapse, but there are lots of options (read:drugs) out therefor the treatment of multiple myeloma and so far I have only tried a handful, and those can also be revisited.

Here is the clearest information I could find about VGPR: “Based on their results, researchers concluded that achieving very good partial response should serve as a major treatment goal for patients and their physicians – not only does it correlate with better short- and long-term event-free and overall survival, but it also encapsulates a larger population of patients than complete response.” So VGPR, a fancy acronym for “you done good, doing great doesn’t happen very often, now stay there”.

I will try and be a better blogger, (I still have the story of my hair to write) but who knows what will happen after this grandchild is born!

 

Published by

Heather

I never thought I’d be writing a blog, and certainly not one that is all about me, and yet, here I am. For me life has always been interesting, not mundane, not always exciting per se, but hardly ever the norm. When I say “It’s always something…” I don’t hear it as my life is a mess, it;s always something. It’s more of life is challenging and evolving and messy and inspiring and wondrous, it’s always something. I grew up in suburbia, buy my grandfather was the head of the Communist Party in the U.S. I was raised keeping that a secret, so that was something. I am tall, always have been, really tall (6’1″), I was taller than every human being in my elementary school when I was in 6th grade, that is still something. My parents divorced in my teens. I got a full basketball scholarship to Duke University. I married my high school basketball coach, 18 years my senior. I raised a stepson. I had two amazing kids of my own. We had a multicultural household, secular christian (I guess that’s what I would call it, you know Santa and the Easter Bunny) and Judaism, I used to say if it was a holiday – we celebrated it! We were uber involved in our community, mostly through youth athletics, coaching, managing and spectating. Our kids grew up, I started a photography business on the side (I hope to share some photos here) and we planned to travel a bit together, went to Portugal for our 25th anniversary and then my husband was diagnosed with stage 4 prostate cancer, initially they gave him 5 years, but he only survived for a little over two. I was going to say lived, but really, it was more like surviving. That, indeed, was something. I became a widow at 49. It was the worst thing that ever happened to me. But, then it was something in another way. I relearned who I was. You don’t realize how much of you becomes a combination of you and another person in a relationship. And not in a bad way, it is essential, and you don’t lose yourself, you just evolve. And I found myself suddenly alone, and learning about myself and who I had become over the years, what was just me, and what was part of who we were together. Which in retrospect, was probably hardest on those around me who had gotten used to the old me, or never even knew the original me. A year later I found love again. Sold my home of 31 years and moved closer to work. I became more fit, ate more healthfully and was amazed that I could be happy, truly happy, in the wake, no not wake, but the shadow of such profound grief. And that is truly something, something amazing and unexpected. And then, through some routine blood work in April 2014, and a visit to a hematologist and bone marrow biopsy in May, I was diagnosed with multiple myeloma. And so, yes, for me right now it’s multiple myeloma, but that is not all, there are still highs and joys, and the mundane and the rest, but something like cancer does cast a pretty long shadow.

3 thoughts on “VGPR”

  1. My gut tells me you’re gonna kick this disease in the ass! ( my gut is always right).Keep a positive attitude. .think about that new grandbaby and keep on fighting. You are an incredible lady and beautiful with any kind of hair! 😀 On Feb 25, 2016 5:59 PM, “Its Always Something” wrote:

    > Heather posted: “I have been a very bad blogger of late. What with a baby > shower for my daughter, a week in Naples, FL with good friends, waiting for > a baby to arrive, my sister’s 50th birthday, working, maintenance therapy, > dealing with this mop of hair growing on the to” >

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  2. Cheers to staying the same….if anyone will obtain complete response it will be you!! Keep enjoying the journey-you’re inspiring!!! And can’t wait to hear about the baby….xo

    Thank You-
    Laura
    Sent from my iPhone

    >

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  3. I like very good partial responses! Just short of perfection. Kinda takes the pressure off. I think aiming for very good partial responses is an excellent goal to shoot for. I think I’m going to try it for my diet this week. If I don’t reach my goal, but move its direction — it’s a win!. Keep up the good work, my friend.

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