Update on What’s Flowing Through My Veins

I have been going to Smilow every Monday, Wednesday, and Friday since I came home from Boston on February 12th. I started off needing blood (low hemoglobin) and platelet transfusions almost every single time and have always needed something and often both.

In the last week and a half or so things have been looking up:

  • March 5th: only blood
  • March 8: only platelets
  • March 10: only blood
  • March 12: only platelets
  • March 15: NOTHING!
  • March 17: NOTHING!

So, today Alfredo at Smilow and Liz at Dana Farber decided that I only need to get my blood checked two days a week. I will go in every Tuesday (because I need my central line bandage changed weekly) and I will get my blood tested locally on Thursday and only go in on Friday if I need anything!

There is light at the end of the tunnel!

My ANC with the assistance of the Neupogen shots had gotten all the way up to 2.8! So they took me off of the injections. But, Monday it was 0.8 (which means I am at high risk for contracting infections) and today it was 0.7. Alfredo and Liz decided that I wold give myself the Neupogen injections on days that my count falls below 1.0 (and that should hold “for a bit”).

The next goal: my platelets and hemoglobin continue to improve so I can have the central line removed!

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.

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