The Clinical Trial That Almost Wasn’t

On Tuesday afternoon, exactly one week before my leukapheresis, I got a phone call from my regular APRN at Dana Farber, Tina Flaherty. She told me that my M-spike was 2.06 and to be accepted into the study it needed to be 2.1. (A higher M-spike = more cancer.)

She told me to get another protein electrophoresis done at Smilow. They were also going to try and talk the pharmaceutical company into accepting me since it was so close and all of my numbers qualified me.

As an interesting point about these numbers, Dana Farber gives the results to the 100th decimal place, so the same test at the same time would have had me at 2.1 since they only report to the tenth decimal place.

So I found myself hoping that my cancer had gotten worse in the last week. I also was much more anxious about not having the treatment than having it.

While I waited for the results from Smilow (Alfredo my APRN there was really great about keeping in touch with me and telling me what they knew, etc.), I got a pre-op call on Thursday for the placement of my temporary line (placed Monday morning, out on Tuesday morning). One of the last questions she asked was who was driving me home after the procedure on Monday? I said, “What? I need to be driven home???” Because it’s a short visit and I was assured I would feel good enough to drive home on Tuesday I am traveling up myself. So just another wrench in the works. My final decision is to still go by myself, if I have time I’ll walk the mile to Brigham and Women’s Hospital and then Uber back to the hotel. Tuesday I’ll drive and park at Dana Farber.

Friday late morning I got a call that they had a verbal on my M-spike and it was 2.4 – yay? 🙂

I will get treatment (“bridging therapy”) at Smilow December 9th and the 16th, the same regimen I was just on (Carfilzomib, Cytoxan, and Dexamethasone).

Hope to get some actual dates for the rest of the CAR-T cell therapy on Tuesday.

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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