In December my doctor at Dana Farber said it was time to start treating my disease. The treatment is a 3-week cycle. I need to go to get a subcutaneous injection of a chemotherapy drug, velcade, on days 1, 4, 8 and 11, along with a dose of dexamethasone (a steroid) and I take a pill every evening for days 1-14 of revlimid and then i get 7 days off.  Because of the frequency of the treatment it was decided that I would get my treatment at Smilow (Yale New Haven).  How the relationship between my treating doctor at Smilow and my primary doctor at Dana Farber will work has been a little bit stressful. No one was very clear as to precisely what the parameter were.

I started treatment at Smilow on January 5th.  It was a scramble to start it that day, and it was the day I “needed” it to start. The timing starting that date worked best for my daughter’s wedding and for my February trip to Florida.  Fortunately we got it done.


I am halfway through the third cycle now.  Side effects are nothing terrible and are mostly predictable.Day 1 is a weird combination of the stimulating effect of the steroid coupled with the flu-ish and tired feeling from the chemo drugs. Day 2 is usually a good day (even if I don;t sleep much the night of Day 1 from the steroids), Day 3 I am really tired and then it repeats.

I didn’t realize the subtle ways that the treatment affected me until my first “off week” when I woke up the first morning “drug free” and immediately thought, “this is just me, I feel like myself”.

On top of the chemo regimen I now also take acyclovir (antiviral medication) twice a day, every day even my off week, an aspirin to prevent blood clots, a multivitamin, and a variety of things to help with the nagging side effect of constipation. So, I have gone from being so proud of being middle-aged and on no medications, to having a medicine cabinet full of drugs I take every day.

I also have some neuropathy in my feet (a common side effect) and irritation at the velcade inject site (the administer it in your belly fat – lovely!).

So nothing onerous, haven’t missed any work (except for appointment time), just try to schedule events appropriately, avoiding my really tired days – definitely do-able.

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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.

4 thoughts on “Treatment”

  1. Got your note about the blog just now, on the train. Read all there is. Thank you for doing this. I will be a loyal follower and always there for whatever you need.


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