Incidental Findings

So, since this is about my health, well, me and my health.  Let me start by saying I’ve always been pretty healthy, at times even very healthy.  A whole slew of orthopedic issues: toe that dislocates, ankles I’ve been spraining incessantly since I was 9, and then all of the achilles issues (both legs) including partial ruptures, debridement surgery.  Most of which I “blame” on my level of activity, playing tackle football with the boys in the neighborhood, frisbee football (where I first dislocated my toe playing in the grass barefoot), years of volleyball and basketball. I did have a benign tumor removed near my clavicle in my late teens, which I only mention because Dr. Bernie Siegel was the surgeon who removed it.  And I had tachycardia starting when I was 18, which did land me in the emergency room a few times, but was resolved with a cardiac ablation in 2010.

For a while there I took great pride in “approaching” middle age and not taking any medications.  Low cholesterol, low blood pressure, etc. But when my husband was dying, the stress definitely started to take its toll.  My body was doing strange things: my hair was falling out and I had terrible sweating and body odor (neither of which I had ever had before, and terrible is really an understatement). And when he dies I stopped sleeping,  With Ambien I was only getting 3-4 hours of sleep per night, every night, for about 9 months straight. I don’t know how I functioned. And then I noticed a weird lump on my throat.  It was my thyroid.  After a series of tests it was determined that I had a toxic multinodular goiter (as pretty as it sounds).  It was not malignant. It was causing me to have slightly overactive thyroid, but just needed to be watched.  This started only a few months after my husband died.  I told almost no one.  It just seemed like too much, to have a “medical issue” going on (especially for my children) so soon after my husband died.  And it really only had to be watched.

And then I went to my neurologist (I have a neurologist because I have suffered from migraines ever since my first child was born, however I had not been in years) because I was having days and days of migraines, which was unusual for me.  She gave me some medicine to try (which I ended up not liking) and thought I should get a baseline MRI of my brain, you know, “just in case I was ever in North Dakota, came down with a bad migraine and ended up in an ER where they did an MRI, found something weird and operated on my brain” – you know, like that. So I get the MRI and it turns out I have a golf ball size tumor (benign) an olfactory cortex meningioma.  This has nothing to do with my migraines, simply an incidental finding.  Although initially the local surgeon wanted to operate practically immediately (a craniotomy, you know, cut in your hair line, peel your forehead down over your face, cut into your skull – pretty!), the surgeon at Columbia-Presbyterian took a much more conservative approach, feeling that my risk of losing my sense of smell/taste was greater if it was operated on than the chances were of it growing. Phew – right?IMG_9296

Then I decide I need to get a new internist and I need a physical.  I see this great young doctor who is very thorough and smart.  I mention some stomach issues I have that seem to be associated with wheat products and he tests me for celiac disease. And then he called me and said he wanted to run a couple of more tests. And then he called me and told me I had these extra proteins in my blood, monoclonal proteins and that I had something called MGUS (mononclonal gammopathy of undetermined significance) and that he wanted me to see a hematologist.  Hematologist sounds so benign, but hematologists are hem/oncs, or hematologist/oncologists, so not so benign.  I did my online research and knew that I could have multiple myeloma, or my MGUS could turn into multiple myeloma.  I also knew that the only way to determine where I was at was to have a bone marrow biopsy.  So I was not surprised when at my first visit to the hem/onc they did a bone marrow biopsy. I was surprised to learn a few days later that I did have multiple myeloma.  I had no symptoms, I felt great, an incidental finding.  Nothing to do with my multinodular toxic goiter or my olfactory cortex meningioma, but as of May 2014, I had cancer.

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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.

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