Why the words are so important

I had my appointment at Dana Farber this past Thursday. And I waited to post about it until I had time to listen to my recording of it. I knew it was positive. There were lots of “yays” and even hugs at the end. So when I was asked how it went I would say “it went well”. But with cancer, at least with my cancer, I am relying on numbers and then how those numbers are translated into words to know how I am doing. Because aside from effects of the numerous treatments I have had, I have no symptoms of my cancer.

So this morning I listened to the recording and wrote down some of the words.

  • With myeloma at this low level
  • Light chains are great
  • IgG is normal
  • Standard maintenance therapy is revlimid 3 weeks on and one week off, because of your genetics (this is the genetics of my multiple myeloma) we will also do velcade every other week
  • Shouldn’t cause more neuropathy
  • Side effects pretty minimal
  • The transplant achieved what we were hoping
  • Free light chains came down quite dramatically 400-500 to 20
  • Come back every 4 months then stretch it even beyond that
  • We are on cruise control now
  • Your myeloma is going to be gone. It’s almost pretty much gone. This (maintenance therapy) is to keep it away for years and years.
  • Your immune system is actually better than it was because the myeloma is not affecting it.

So there you have it, lots of positive words, along with “yays”, smiling faces, joking around and hugs.

I don’t know why, but I remain pretty neutral, not pessimistic, but not even cautiously optimistic. I feel like I’m from Missouri – show me. Show me I’m still cruising along a year from now, 2 years from now.

I guess, I don’t want to get too high, it makes the lows feel that much steeper.

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.

9 thoughts on “Why the words are so important”

  1. It seems sensible to be cautious about the outlook and take a positive day by day approach, but maybe soon, maybe a year from now or early next Fall, just stand up and say,” What the Fuck! I’m done with this cancer shit.” just saying.

    Liked by 1 person

  2. I subscribe to the “right now, in this moment… I’m okay” school of thought. It’s versatile, easy to learn, and often very comforting. It works in times of crisis, and it works in times of quiet, too. I am glad that right now, in this moment, you are okay. I am glad that I’m okay, too. That sounds kind of trite, but it isn’t. Being okay is great. : )

    Like

  3. …10, 20 years from now, a very reasonable demand. Being in the moment is a rational and settling choice, but having been there (a little), I know you can never be 100% assured. I’m always with you.

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  4. So happy to hear that. You have been amazing along this journey. You really are an inspiration. Keep on doing what you are doing cuz its working for you.

    Like

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