Closer to Free (to steal a phrase)

Everything keeps moving in the right direction. The last time I needed a transfusion was March 19th. So when I went to Dana Farber two weeks ago on March 25th I had my central line removed! This was huge for my day-to-day. The three lumens on the line had to be flushed daily (by me, if I didn’t have an appointment at Smilow). I had to wrap it up to take a shower and never stand full on in the front in the shower. An inconvenience for sure.

With my hemoglobin and platelets continuing to rise it was just my ANC that was lagging and needing a boost from time to time (shots of filgrastim that I administer). The last time I needed a boost was March 29th and yesterday I asked Dana Farber if I could go to once a week blood draws instead of twice a week – and they agreed!

And most importantly my multiple myeloma numbers continue to go down. I go back to Dana Farber on April 22nd for another check in. When I went in March I had three questions all ending in -ine:

  • Central line ✓ (removed)
  • Vaccine ✓ (I can get it at 3 months, however they don’t know if I will develop an immune response or not)
  • Wine ✓ (in moderation)

And I am back to doing toe lifts and squats when I diffuse my hair. Full workouts coming soon. I feel better and better every day. (The new puppy is definitely contributing to my activity and fitness!)

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.

7 thoughts on “Closer to Free (to steal a phrase)”

  1. Cheers to you “moving in the right direction” and “closer to free”! Continue to love life and Lola, Heather! …looking forward to toasting with you and our crew when it is safe for you!
    Hugs & Love,
    Laura

    Liked by 1 person

  2. Yippee! 💕 all this good news!!Your puppy and positive attitude are surely part of this recovery and progress!!Sending hugs and best wishes from B and B!!

    Sent from Yahoo Mail for iPhone

    Liked by 1 person

  3. Hi heather
    Sounds like you are making remarkable progress and I am so very happy for you! You are the bravest women I know! Two dogs now and lots of work! Blessings and Peace, Carol

    Liked by 1 person

  4. Such great news on the bad going down and the good going up. I’m such a minor leaguer in the myelo-matters, so I have difficulty knowing about lines and lumens. As long as getting rid of them makes you happy, that’s all I need to know. As I always say, you’re the true warrior.

    And the face on that puppy must be a great motivator. Truly a love puppy.
    Love you.

    Liked by 1 person

  5. So glad I got to hear your instructions to Tess re:Lola…
    ” …if she starts going crazy, there’s nothing you can do… Just go into another room and shut the door…”
    Oh, my friend.
    You do know
    How to pick them… : )

    Liked by 1 person

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