(micro) Managing

One of the things I have struggled with since being diagnosed is my, what some might call, my control issues. (Think the National Car Rental commercial “I’m not a control freak, more of a control enthusiast.”). Once you become a patient you do lose a lot of control, not all, but a lot. I admit, that where I can, when dealing with my personal things I do like to try and take control. (I can literally hear those that know me well making all kinds of snide and sarcastic comments – it’s o.k. I can take it!)

Managing my time off from work is one of those areas that I have tried to take control. From my perspective I should be able to do it and I need to do it. Let me preface by saying that my boss and workplace are very understanding about my condition and situation, unequivocally great. Additionally, my place of work gives a very generous sick  and paid time off benefit. However, when my husband was sick and dying I used all of my accumulated sick time. So 3 years ago I was starting at ground zero. Work is flexible and I typically arrive at work 30-45 minutes early. When I take a half day to go to Boston for treatment I check email and respond where I can even if I can’t actually “produce” any work. I try to be fair, sometimes more than fair, I am good with that, I rest easier if I do it that way. Which brings us to treatment days (days 1,4,8 and 11 in a 21 day cycle).

My actual treatment, including have two nurses check and cross-check the drug takes less than 5 minutes.  The give me 4 small pills of dexamethasone (decadron) and then give me an injection in the fat of my lower belly.  I don’t have to wait after that,  I can just walk out.  Simple, right?

Here’s the thing that I try to do.  I try to beat the system. I have an 8:30 am treatment appointment, the lab opens at 7:00 am. I figure I’ll quick get the blood work and then go to work for a bit and come back for treatment. I arrive at the lab at 6:50 am.  Surprise – I am not the only one with this idea, there is a line and they aren’t even open yet. Foiled! I now go to the lab right in my town at 7:00 on my way into work.

I arrive early for my treatment appointments. I am ever hopeful. But – the drug hasn’t been ordered, have to wait for MD to approve a slightly low blood count, they didn’t mix the drug because of the snow storm they didn’t know who would show up, the drug hasn’t been mixed (no explanation), etc. Suffice it to say, it’s always something.

I am not, by nature, a patient person (again I hear the guffaws). I do try to be reasonable. When I am scheduled to see a doctor for an appointment, particularly an oncologist, I have learned that you often have to wait, however you are never rushed out of an appointment. The doctor will take all the time he/she and you need.  So you wait, but then the time is yours until you are completely done. And when I arrive at 7:20 for a 7:30 appointment I truly do not start to get irritated until 8:10. Because by 8:10 I know that I will not get to work on time. Does my boss care if I arrive 15, 20 or 30 minutes late?  Not at all. But I do. Partially because I am working so gosh darn hard to get there on time! And I know that stress and anxiety is not good for me, not good for my body, my immune system.  Maybe once I learn to meditate (on my list) I can make better use of that waiting time.IMG_9610

This morning, I arrived (with a terrible cold) at 7:20 for my 7:30 appointment. One of the nurses comes out and starts chatting with a patient who she has befriended who she does not have today. Picture me sitting there, and all I can think, as she is chatting away, is if she is MY nurse!!@$#@$!! She wasn’t. Then the medical assistance arrives, she is the sweet older woman, perfectly lovely and efficient. She greets the receptionist and the receptionist starts telling her that some friend of hers, or her friend’s sister or something (breaking every HIPAA regulation there is!) was hospitalized, blah, blah, blah, blah, blah… She finally takes three of us back to be weighed (you get weighed before every treatment and at every visit) and she tells me the nurse I have – score! – the smart, nice, super efficient and very thorough one. I go to my room and wait. The MA does my vitals (I’ll have you know with all this impatience etc. my blood pressure 118/72 – I credited all of my swearing, an excellent release). Then the nurse stops in.  She just stops in because she forgot her badge at home this morning, but her husband is meeting her in front of the hospital to give it to her, because he is awesome like that, and then she is going to do this other woman’s blood draw, it’s really quick, buy my velcade is there and my blood work looks great.

It just goes to show you, it’s always something.

P.S. Got to work at 8:51.

Published by

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.

One thought on “(micro) Managing”

  1. Ok… that stuff about stress and anxiety not being good for you? That is true for some people. Other people? THRIVE on it. : ) Relax! It’s okay to stress! wait… what?!?

    Like

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