The 2nd Inning

It feels like I haven’t blogged about multiple myeloma in a while…

It started with a pain on the side of my upper chest on April 16th, which grew worse day by day, until it hurt to take a breath. My first thought was breast cancer (I don’t know why. I’m a little over due for a mammo?). Then I thought I had COVID-19, you know you read a symptom “tightness in your chest” – but when the rubber hits the road what does that mean?!? I called Smilow and they said to call back if it got worse.

It hurt to lift my arm. It hurt to lay in bed. It hurt to take a breath. It hurt. But, I was already scheduled to g in for treatment on Thursday, so I waited. And it got worse.

So there’s a lot of blah, blah, blah between then and now that goes something like this:

  • X-ray = broken rib, maybe indication of bone lesion.
  • PET scan, full body = single bone lesion on the left rib where the break is.
  • Conversations with Dr. Seropian at Smilow = change in treatment? radiation? what does Dana Farber think?
  • Video visit with Dr. Munshi = (I love Dr. Munshi, have I mentioned that? I love him so much I may be in love with him.) Orders a bone marrow biopsy, unusual that it’s just one lesion, my numbers are creeping up but not too dramatically.
  • Bone marrow biopsy = (Have I mentioned that I hate them? Well, I do, they hurt. They stick a needle into the bone of your hip to remove marrow and they take a bone sample.) It was a bit of a shit show, after the APRN telling me I should not feel any pain down the back of my leg, I got pain down the back of my leg. And then he had to call in someone else to do it. She struggled a bit, I had my earbuds in with very loud music so I couldn’t hear it all, at one point she said “Maybe this needle isn’t sharp enough.” Nice. And then I got pain down the front of my leg. Afterwards she said I have very hard bones, whatever.
  • Almost 2 weeks for bone marrow biopsy results = Change in treatment, the myeloma is back. Relapse.

Relapse. “Some people stay with this regimen for 20 years.” That is not going to be me.

But, this is not tragic. There are many, many treatments for multiple myeloma. Everyone’s path is different. I have a friend who was diagnosed 12 years ago, had a stem cell transplant 11 years ago, but that only held for several months, relapse. But since then he has been on the same regimen, without another relapse.

It is also not great news. I am back to being a full on patient.

My new “regimen” is daratumumab/pomalyst/dexamethasone (although the pomalyst might be up in the air, it is similar to revlimid which my blood counts struggled with, doctors are discussing, we will see). Daratumumab (aka Darzalex, Dara) is a targeted monoclonal antibody. It binds to CD38, a protein found on myeloma cells (this protein is also found on other cells, such as red blood cells). It is thought to slow myeloma cell growth in several ways, including by helping the immune system to seek and destroy myeloma cells. It is not a chemotherapy, it is an immunotherapy. The side effects are similar to ones from my previous treatment regimen. I did not enjoy taking dexamethasone when I was first treated, we’ll see how I do with it this time.

IMG_4471

The greatest risk is an infusion reaction. So they give it to you very slowly in the beginning. They pre-medicate you with 50 mg of Benadryl, Tylenol, Singulair, and the dexamethasone and wait 30 minutes. I had my first infusion yesterday and made it through with flying colors, no reaction at all, so they anticipate that I will not have one. The administer half of it each in back-to-back days, so I go back today for the second half. I was there yesterday for 6.5 hours, the infusion takes 4 hours and then you have to wait 30 minutes to make sure you are stable.

Next Thursday the infusion will only take 90 minutes (which means at least 2.5 hours) and that’s what it will be going forward. The schedule is once a week for 8 weeks, every other week for 3 or 4 months and then monthly. So, monthly will be good, I’ve been going every other week for 5 years.

At my last appointment at Dana Farber in January, Tina Flaherty, my APRN, was talking about all the treatments coming down the pike and then said, “But you don’t have to worry about that, you’re only in the first inning.” So now, I guess I’m in the 2nd inning.

 

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.

13 thoughts on “The 2nd Inning”

  1. Oh Shit Heather…. sorry for this news!!! It’s so hard to ride the wave! Sending positive vibes❤️

    Sent from my iPhone

    >

    Like

  2. Just read this. You beat it before; you will beat it again. Let me know if I can do anything.

    Sending love and hugs.

    Linda

    From: It’s Always Something
    Reply-To: It’s Always Something
    Date: Friday, June 19, 2020 at 5:12 AM
    To: bcc
    Subject: [New post] The 2nd Inning

    Heather posted: “It feels like I haven’t blogged about multiple myeloma in a while… It started with a pain on the side of my upper chest on April 16th, which grew worse day by day, until it hurt to take a breath. My first thought was breast cancer (I don’t know why. I'”

    Liked by 1 person

  3. Heather, you are such a strong, inspiring, articulate, amazing woman! You will score well in the second inning! We’ll all be rooting for you.
    Love, Linda

    Liked by 1 person

  4. Geez Louise, Heather, this is not what I hoped your new blog entry would be about. As with everything, I know you will give this fight all that you have and you will win again and again and again.

    Liked by 1 person

  5. So sorry to hear this news but you are one very strong woman and will fight this again and win. Sending you all good thoughts for a speedy second inning.

    Liked by 1 person

  6. Sonuva B, Heather! … I thought I was going to read a wonderful update about a medical anniversary you were having celebrating. This was a shocker for you, I’m sure.
    Sending alL our love and positive vibes… kick ass, Heather!!! XO

    Liked by 1 person

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