Consolidation and Maintenance

During my visit to Dana Farber yesterday Dr. Munshi determined what is next for me. I will start with 2 cycles of RVD (revlimid, velcade and dexamethasone) for my consolidation therapy. This is the same chemotherapy I started with back in January 2015. I will get velcade injections and dexamethasone twice a week, two weeks on and one week off, with revlimid (pill) every day for the two weeks on. For my maintenance therapy he is recommending velcade (injections every other week) and revlimid (I am not clear on how often, I know it is a lower dose). The maintenance therapy is ongoing, as long as it keeps working and I do not experience adverse side effects.

They ran blood work, including the serum electropheresis which shows my M-spike, a key multiple myeloma indicator, the results of which are not in yet. Smilow ran it a few weeks ago and it was down to 0.8, which is good, but not 0. Dr. Muhshi and Tina Flaherty (the APRN) said that the melphalan (the chemotherapy I had prior to the rescue stem cell transplant) keeps working for 6 months sometimes even longer, that and the consolidation therapy should help to push that number down further. They also told stories of patients who never get to 0 but hover under 1 for years and years.

So that’s where I stand and what I will be doing. I’m slowly remembering what the treatment was like for me last winter. Not terrible, not fabulous. Some sleepless nights, some tired days after sleepless nights, feeling a little bit off, constipation, some queasiness, some shakiness and then feeling normal again on the week off. And it’s only 2 cycles. I got this.

Lisa took me to Boston yesterday and we laughed and giggled our way through. When we were waiting in the exam room I was explaining and demonstrating how lunges were still hard for me, and it’s all about the balance and how I need to look ahead at something stationary. I was looking at her, so of course she proceeded to waive her arms and move all around. All this while Dr. Munshi and Tina happened to be walking by the room on their way to another patient. Apparently, we were a bit loud, they said “We’ll join the party in a minute.” They mentioned later it sounded like we had 10 people in the room – nope, just me and Lisa! It was actually a fun trip. And I wore the mask and gloves for the last time when we were in the clinic, which I whined about. Lisa got a big kick out of this, ‘After all you’ve been through without a complaint, this you’re whining about?” Everyone has their limits 🙂

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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.

2 thoughts on “Consolidation and Maintenance”

  1. In the grand scheme of things, this is all good news, Heather. Happy to have you back at work. Keep finding the humor in everything!
    Ann Marie

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