Inpatient

Sitting in the inpatient waiting area for my room to be cleaned. So close…

The FDA approved the expanded access request for me for the CAR-T cell therapy. The request still has to be approved by Dana Fatber’s IRB (Institutional Review Board) but that is being expedited. All of my orders need to rewritten and they are changing the dose of my chemotherapy because of the low platelets.

They anticipate starting the chemo tomorrow afternoon.

It’s been an interesting day because Alison and I had to check out of the hotel at 11 am. And COVID.

First we headed to the Blue Hills Trailside Museum (which is mostly like a small zoo), but it was closed.

From there we headed up the North Shore where we found delicious fish and chips and the Gloucester Fisherman’s Memorial.

Our last stop was Rockport, MA which is just lovely, hope to go back non-COVID (and feeling better).

All the while checking for email messages and finally calling the hospital and was told it would be ready around 5:00. Got up to the room around 6:30.

It was good to tool around in a car and see some sights (without exerting myself too much). This stay in the hospital could be anywhere from 10-14 days. No visitors allowed.

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.

10 thoughts on “Inpatient”

  1. Heather,
    So happy you have cleared this hurdle.
    At least tomorrow will be memorable for multiple reasons. You will have no problem finding things to watch on TV.
    God Bless🙏🏻🙏🏻

    Liked by 1 person

  2. Hi Heather,
    That’s awesome news about your FDA approval. It sounds like you are ready for the treatment to begin. What a nice way to have spent the day yesterday. Gloucester and Rockport are cool and beautiful. You’ve got to go back in summer with your camera. You’ll have a field day!! I hope that you get to watch the inauguration today! At last!! There is a lot to be hopeful about. Good luck with your treatment!! I’m sending positive vibes and love your way!

    Like

  3. Heather, so happy for the FDA approval and that you are on your way. Miss seeing you on Zoom (and real life too). Good luck with everything. Hugs and kisses. Denise

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  4. So grateful the FDA came through! So grateful things are moving forward. I’m so glad you and Alison found some beautiful sites and delicious food while you had to wait. You two make a great team, so grateful for her. Hurdle after hurdle you’ve been an incredible champ. Praying the rest of this goes smoothly. We are with you every minute. We love you!❤️

    Like

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