yyyyyyyyyy

The photo above is “y” I haven’t updated the blog, I apologize for the lapse.

Since I arrived here at Brigham and Women’s (Dana Farber’s inpatient hospital) I have been asked what every nurse and doctor calls “those silly questions”:

Where are you? Brigham and Women’s
Which city? Boston
Some version of what’s the date? February 2021 (at least)
Can you name 3 simple objects in the room they point to? Flashlight, refrigerator, pen
Can you count backward by 10’s from 100 to 0? 100, 90, 80, 70, 60, 50, 40, 30, 20, 10, 0.
Some doctors ask can you name the days of the week backwards starting with today? Tuesday, Monday, Sunday, Saturday, Friday, Thursday, Wednesday

And the last one is to write a simple sentence. Seems weird but for the most part thinking of what to write was the hardest part. In one midnight testing I wrote: “The rain in Spain stays mainly on the plain.” I laid back down and couldn’t even remember where that came from, then of course, My Fair Lady, Eliza Doolittle – random!

But on Thursday (day +9) I did get a fever and they could see the indicators in my blood that there were a lot of cells were dying. I was finally getting the response to the CAR-T cells I had been hoping for. Both Friday and Saturday were rough days. Below are sentences from Saturday.

Easy to note the loss of neuro capability.

For several days I was in and out, coming and going with the fevers. I totally “lost” at lease one day, maybe two. Examples of what it was like:

  • I could not figure out how to make a call with my iPhone
  • And I wanted it on speaker, also a no go
  • If you did get a call from me there was a day I could only get about 3 words out
  • Texting was very difficult, and I chose not to for several days, that took the longest to come back
  • Exhaustion
  • Difficulty getting out of bed
  • No appetite
  • Napping most of the day

It was just yesterday morning that I quickly sat up on the side of the bed and felt almost totally like myself.

This was all part of the CRS (cytokine release syndrome). CRS is also seen in COVID patients.

I also had TLS (tumor lysis syndrome), this was less something that I felt, but was carefully controlled by the team here. TLS can damage your organs, including the kidneys, heart, and liver.

The really good news, as they kept telling me, was as badly I was feeling my myeloma was getting it worse. They were very impressed by the response, saying they hadn’t seen such a great response. It will be several weeks before I come back for scans, etc.

And yes, I said “come back” – it looks like I will really be going home on Thursday. Today they finally stopped the extra fluid, and other meds, and as of tonight my numbers look great on their own.

I will update if that changes, and plan to update more as I can now.

I hope you can laugh along with me at my neuro toxicity “writings”. When I first laid eyes on it I laughed and laughed.

There must be some others in a trash bin somewhere, perhaps I’ll ask if they save them as part of my record.

Again, this team here both nursing, rounding PAs, PCAs, and the amazing brains on the CAR-T team (including my Mr. Munshi, but many others).

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.

12 thoughts on “yyyyyyyyyy”

    1. I am sure you will be so glad to be home and just in time for another possible snow storm. The one this past Sunday was coming, not coming, coming! 10 inches on top of the foot from the week before! Getting my 2nd vaccination on Thurs at the Laman Center and then Cheryl would like me to work at the clinics.
      Safe travels home and hope you continue to feel like yourself again! Peace and prayers, Carol

      Liked by 1 person

  1. Such an amazing journal of your adventure to be well and whole again. All those prayers and good wishes and bits of humor were the icing on the cake. Best of luck getting back home to the comfort of your own bed. Take care, Ann Marie.

    Liked by 1 person

  2. Well Heather, I give you an A for effort on those sentences!! I’m so glad to hear that the treatment is working!!! Safe travels home on Thursday. Here’s to continued progress!! I miss you.

    Liked by 1 person

  3. Heather, so glad you are feeling better and on your way home. It is great that you can laugh about the ups and downs of your experience. Will be so happy to have you back in CT in the comfort of your own home. Wishing you the best always- you are fabulous! Hugs and kisses, Denise

    Liked by 1 person

  4. Well… Even when you are in distress, semi-conscious, feverish, and exhausted, you’re still better at texting and calling than I am.
    Looking forward to seeing you face to face back home in CT
    Godspeed, my friend.

    Liked by 1 person

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