Not proud

I am not proud, but I did manage to get Smilow to have me start treatment tomorrow (Monday). I did happen to cry on the phone after they told me they were having trouble getting me an appointment. Mind you, they didn’t call to tell me that, I had to call them. It was at the end of the call, and I couldn’t help myself, I had to say something. “You know, it isn’t stressful enough to have cancer, and then I have to deal with this.” That’s when I started to cry. And, no, I am not proud, but I also don’t think it should have to come to that. Within the hour I had a message saying that I was on the wait list for treatment on Monday (this was Wednesday).

So, good, I was on the wait list. I asked if they had started the process of ordering the revlimid. They had not, I have to have a pregnancy test first. I wrote back “If you put the order in I will go take the test.” Really?  You’ve known I was supposed to start this treatment for three full working days and you didn’t get this started? It has to be ordered from a specialty pharmacy and overnighted to me. They write back and say the blood test orders are in. I go and get the blood work done.

Thursday goes by. And then it is Friday afternoon. I have heard nothing, which at this point is no surprise. I have somewhat resigned myself to the fact that I will not be starting treatment. I send them a message saying I assume since I have not heard anything I will not be coming in. (They told me I was wait listed but never explained what that meant.) I get a message back “You are scheduled for 2:00.” Well, thanks for letting me know! I ask again if the revlimid has been ordered, the response “The Hcg isn’t ready yet, when it is we will order.”

So, I happen to have two revlimids left over, which I will start to take tomorrow night. And I don’t think much about it, and wasn’t sure what the Hcg was. I was actually mixing it up in my mind with another test. But then Saturday night I look it up, and of course it is the pregnancy test. They are saying that a pregnancy test that I took Wednesday afternoon is not resulted by Friday afternoon? That is crap.

This experience with Smilow is crap. I sometimes blame it on the fact that they are not acting as the lead for my treatment, but I am not entirely sure if that is the case. And now I am a little bit embarrassed to show up there tomorrow afternoon being the woman who cried on the phone last week, But maybe they should be the ones who are embarrassed.

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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.

4 thoughts on “Not proud”

  1. Unfortunately this is an all too common experience for patients. I am sorry that this is happening to you but never be embarrassed about crying (i.e. expressing frustration) with an inefficient system. They should be embarrassed not you!

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    1. I know you speak about this from professional experience, and I think it almost makes me feel worse that it isn’t just me. I am at least able to stay on top of this/them. What about the folks that don’t know better. Or are too embarrassed? Ugh.

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  2. Heather do not be embarrassed. To emphasize your stress to them I think I would arrive there tomorrow in tears! Thinking of you, peace and love, Carol

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