So, the new regimen also did not exactly do it’s job, so Dr. Munshi at Dana Farber has prescribed a different treatment, CDEP, Dexamethasone, Cyclophosphamide, Etoposide, Platinum (Cisplatin). The four drugs are given in combination over four days, dexamathesaone in a pill and the other 3 via a slow, constant infusion as an inpatient. I am going to Boston late morning tomorrow and will be admitted to Brigham and Women’s (across the street from Dana Farber, where they do all of their inpatient treatment).I should be discharged on Saturday. My understanding is that I will mostly be bored (maybe I’ll blog!). The following week I may not feel great as my blood counts will likely be very low. I will be watched by my doctor here at Smilow and may need transfusions and/or the support of neulasta (again).
And the following week, I may lose my hair – eek. There will at least be thinning – which I can well afford, as long as it isn’t in a big clump right on my forehead! But, I am mentally preparing to lose it all. And even if not from this treatment then certainly from the stem cell transplant that this treatment is preparing me for, which will likely be in about 8 weeks or so.
Aside from total vanity, losing my hair means that the world will know I have cancer. Although it is not a secret, I am not “out” at work, nor on Facebook. I just don’t want any pity parties!
The other problem with losing my hair is covering my head, my huge, gigantic head. I did some rough measuring and from my calculations I am just on the outside of the largest size in women’s wigs. I already know my head is too big for women’s hats. So, it shall be interesting…
The best suggestion so far came from my friend Michael, and I quote,”more cleavage” Yes, there is always that. It reminds me of that old W.C. Fields quote that Ken use to repeat (often),
“If you can’t dazzle them with brilliance, baffle them with bullshit.”
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.
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