Line In, Cell Collection, Line Out

If only things were so simple as the title of this post. But, dear reader, never fear – all is well.

I drove to Boston at 5:00 am on Monday morning, December 7th. I valet parked my car and left my suitcase with the front desk. And then I walked the mile to Dana Farber.

Then I walked the maze that is the Dana Fraber/Brigham & Women’s complex, all inside in overhead walkways. They schedule you to arrive at 9 am for a 10:30 procedure. Tending toward the prompt side, I had a long wait in the waiting room.

When I got down to the pre/post op area the nurse started running through her questions. She noted that I had told them I would Uber back to the hotel. She then asked me who would be staying with me? “No one.” “You are having conscious sedation, you need someone with you for 12 hours.” Of course, this would have been good to know when I had the lengthy pre-op discussion on Thursday night!! Oy. They landed on giving me less sedation. And they did, and I was fine.

The next day I arrived at the Kraft Family Dlood Donor Center where they do the apheresis. Yes, that Kraft, the whole place is strewn with Patriots memorabilia! I had a visit from one of the research nurses, she told me I might want to stay over night because some people get tired from the aphaeresis. Do these people not know that I am a planner and need all of this information up front?!?! Anyway, a mere five and a half hours later and the apheresis was complete. I loved my nurse who sat with me for most of those hours. I asked a lot of questions, he was very informative and had good advice. He also had a lot to say about the ways politics and medicine come to play. He kept pointing doing the street and referencing “Cambridge”.

Then I headed back to have the line removed, which was inconsequential, other than the slight discomfort of laying down flat on your back with your head below your heart for 30 minutes.

Next up was a special bonus visit, back up to the multiple myeloma clinic for an Xgeva shot because my calcium was elevated (12.9). And then the drive home, which did not include any traffic even though I left a little after 4 pm. I always like to point out whatever little upside there is to this pandemic – no outbound traffic on a Monday night in Boston!

Wednesday morning I started my bridging therapy at Smilow. And because my hemoglobin was low (7.9) I needed to get a blood transfusion.

I felt pretty terrible on Thursday and Friday, probably the worst I have felt since the stem cell transplant. Very out of breath and oh so tired. Saturday I went into Smilow as scheduled for a neupogen (zarzio) injection to make sure my white blood count doesn’t go too low. Now, get your score cards out: my hemoglobin was down to 7.7, and on the bright side my calcium was almost normal at 10.3. So, another blood transfusion. Four and a half hours there.

Calendar updates

Bridging therapy: December 9 (done), December 16 and 23 (all Smilow)
Arrive in Boston: for the next phase of the overall CAR-T Cel therapy: January 13

I will stay in Boston from that date until 21 days after I receive the cells back (Day 0)(approximately January 20). However, they have warned that these dates are NOT set in stone and even mentioned that Dr. Munshi might want me to stay in Boston until 28 days after Day 0.

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.

3 thoughts on “Line In, Cell Collection, Line Out”

  1. Your determination and incredible positive spirit are inspiring.. You’re doing so much more than you should have to…but you’re doing it. And that’s inspiring.

    Like

  2. Dear Heather,
    I wish I could write as eloquently as you (yes, even your descriptions of your medical appointments are eloquently written), so I could find the words to tell you how remarkable you are, inspiring you are… and how damn brave you are every day.
    Our prayers, thoughts, and hearts, are with you, as you continue on this long journey to good health; we know you will kick ass.
    Love, Terry & Randy

    Like

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