Finally Moving to the Next Step

The IRB approved my protocol. Now the protocol needs to be posted and printed and then Dr. Munshi will come over and consent me and then we can start.

The chemo is a 2-drug regimen. The first day I’ll get both (which is standard) and then apparently there’s some wiggle room for days 2 and 3.

The goal of this chemo is to move out all of my lymphocytes to make room for the re-engineered ones (CAR-T cells) which will proliferate.

They will watch my platelets (currently 12) and hematocrit (currently 23.4) and supplement with transfusions as needed.

I am about 90% sure we’ll start today, but it’s 10:30 and the clock is ticking…

I am so grateful for the love and support that continues to come my way. Thank you, thank you, thank you.

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.

12 thoughts on “Finally Moving to the Next Step”

  2. You can do this, Heather! You are a remarkable woman! The sun is shining! It is a new day! Sending hugs to Boston today…and tomorrow and all the time you are there!
    Becky

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  3. I am honored to be a part of your “Blog” group. As a survivor myself I am pulling for you. You are strong and your sharing helps me understand how fortunate I am and all survivors are. Cancer sucks.. but you will get through this. Thought, prayers, and good vibrations going your way..

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  5. You already deserve a medical degree…
    You explain everything so well so we know exactly what’s happening. You are remarkable… and a bad ass!! Get it, girl, get it! Xoxoxo

    Liked by 1 person

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  6. Keeping the love & prayers coming to you, Heather! Your strength and fight are remarkable, and you’ve got this….so keep up the tough battle, and we will keep loving and praying for you!
    Hugs, Laura

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  8. I just decided to re-read you initial entry for this blog where you gave a quick overview of your life. You have truly been subjected to the roller coaster of life and yet I see in you one of those who ride with their hands up laughing and smiling all the way, taking each whoop-de-doo for everything its got, and readying yourself for the next whoop-de-doo. That attitude is what will get your through this and I hope and pray it will be as easy of a process as is possible. And then, I wish you a less bumping roller coaster forevermore.

    Liked by 1 person

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