Trot, trot to Boston…

Kirsten and I headed up to Boston to get my first post-transplant check up at Dana Farber. We departed with plenty of time to spare, but In true “it’s always something” fashion there was an oil tanker that rolled over and caught on fire on I-91, which delayed us 45 minutes. It all worked out in the end as once we got there I pretty much sped from blood draw to visit faster than I ever have and we missed most of the traffic coming home.

The news once there was all good. There was of course the repeated refrain of “You look really good.” which is almost silly at this point, but better than the alternative. My CBC counts all look good. Platelets are steady, hemoglobin is in the normal range and my WBC continues to inch up. She actually said I had good bone marrow – which made Kirsten laugh, because you know, my cancer is in my bone marrow!

So at the end of July many of my restrictions will be lifted.I will be able to:

  • go to other people’s houses
  • go to restaurants and other public places (when they are not busy/crowded)
  • all of the food restrictions will be lifted except for sushi, soft-serve ice cream and salad bars

As of right now:

  • I am released to drive if I feel up to it, only short distances, and during daylight
  • I can have take-out cheese pizza (my Mom is bringing me one from Modern Pizza tonight!)
  • I can have a glass of wine (but I still have no taste for it at this point)
  • Some of the strict cleaning details have been eased
  • Only one more week of that disgusting mepron!

My primary instructions are to stay away from sick people and go home and continue to recover. My daily walks are up to 35-45 minutes and are including some decent size hills. I am up to 20 squats and I am getting ready to throw in some more of my other exercises.

The problem comes with the more I do, not only does it make me tired but it makes me more nauseous, so I am walking a fine line. I get tired from simply being upright for too long (just sitting). Yet I can do things like cook as long as I take breaks. Speaking of breaks, I can finally shower, get dressed and put on my eye make-up without resting in between! Big step!

Things continue to taste weird/bad and my tongue still feels yucky.

I will haveweekly blood checks this month at Smilow, then every other week in August and back to Dana Farber on September 3rd. Things still to be decided are if and what a consolidation treatment might be for me (possibly the RVD, revlimid, dexamethasone and velcade I started with back in January) and what my maintenance therapy might be (just revlimid?).

I am cleared to go to the wedding on August 15th in NYC and my vacation in Hampton Bays the first week in August. It is always inspirational to have things to look forward to!

P.S. Shout out to my friend Donna who weeded my front garden – woot woot!

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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.

7 thoughts on “Trot, trot to Boston…”

  1. Hey Heather, I’m so happy to hear of this great news. Congratulations on all of your new found freedoms!!! I hope that pizza starts tasting like it should again really soon:)


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