Time Bomb

time bombThe other day I reposted an essay from my old blog – What If? Part 2. I had revisited it, because I’ve had a similar post rattling around my head for over a week and I didn’t want to repeat anything. But, finding myself in almost the same exact situation – waiting for biopsy results – a year and a half later, I guess I’m doomed to repeat something. Especially this – I really don’t want to write this post. I’m intensely private when it comes to certain things (and as I wrote in my previous post, I know that may come as a surprise with all of my psyche plumbing essays), and this is just something that I don’t want to share. But, and of course there’s always a but, I know that it will help other people going through the same thing. I also know that when I write about something, it usually defuses it in my brain. And lastly, I’m ridiculously superstitious and since I blogged before receiving my last two biopsies results and they were negative, one little part of me thinks – well, you better blog before this one too. Silly, right?

Only – is it like the Budweiser commercial, it’s only weird if it doesn’t work? Who knows – people employ all kinds of good luck charms. I guess I’ll know if it works soon enough – my doctor was supposed to call me two days ago. Actually, she said that she might have even had the results five days ago – before the weekend, but definitely by Monday. It’s now Wednesday and my phone hasn’t rung. I know I should call her, but I just keep putting it off. No news is good news, right?

I’m really not surprised to be in this position again. For years I have felt like my girl parts – at least my ovaries and uterus – are ticking time bombs. My sister and my mother both had reproductive cancers. My aunts on either side had breast cancer, sometimes considered a reproductive cancer. My grandmother passed away from cancer one week after she was diagnosed, it was so advanced. Her bones were lacy from the invasion of cancerous cells, but it likely started elsewhere. All of this is why a gynecological oncologist geneticist (quite a mouthful, if that’s even the right term) at Sloane Kettering told me a year and a half ago that the ticking time bomb analogy isn’t quite so far off (maybe not in those exact words, though). I may have Lynch Syndrome. Lynch Syndrome causes a genetic disposition to more cancers than I care to share here and they are the worst ones (not that any cancer is good). It’s not a death sentence, but it’s surely a “lifetime of worry” sentence.

The only way to know for sure if I have it is to have my sister’s tumors tested from almost two decades ago. I called the genetics office at the hospital where she had her surgery more than once and they never returned my call. I’ve now found out that her tumors may be long gone; many are kept for only a decade. I did speak with a genetic counselor at another hospital when I went to get an ultrasound the other day. She told me that they have newer tests that may be able to give me an answer even without the tumor.

I probably should have thought about the fact that I may finally have an answer as I was lying on the table, feet in stirrups, staring at the ceiling and counting the slightly cratered tiles above me. All I could really think about though, is what kind of a deal I could strike with God. I’ve had a lot of ultrasounds and struck a lot of deals. I had run out of things. I couldn’t really promise to be more charitable – I already run the charity drives at my son’s elementary school. I post homeless animals on my Facebook rescue page. I could have promised to continue to be charitable after my son graduates elementary school this month, but I didn’t think of that. Instead, all I could think of was that I’d be less anxious. Ha! Like that was going to happen, especially since I knew that something was wrong.

Once you’ve had enough of these tests, you can tell when something’s not quite right. I could tell, because of a few very kind comments the radiology tech made. She didn’t give anything away – the technicians can’t. I’m just hyper-attuned to people’s words and the way they say them, perhaps because I’m a writer. They were just general sympathetic utterances and not anything specific to my situation, but I knew.

And then, I had to wait for the doctor to come in and take a look. She usually just pops her head in and says, “Everything looks good. You’re fine.” Or maybe, she’ll take a quick look herself and then offer reassurance that everything looks as it should. But, this time she lingered. In one spot. For a while. It felt like an extremely long time that I was lying there in that dark room, looking at the ceiling, but it may have only been five minutes or less – or it could have been ten. I have no idea. It seemed like an eternity until she told me that it could be nothing, but maybe I should get another – more invasive – test just to be sure. There was definitely something there, probably polyps (which are most likely benign, but could be pre-cancerous or cancerous). Whatever it is, the course of action would be a biopsy. Which is exactly what I had done. So, I felt like I was one step ahead of the game. I wouldn’t have to wait another week to see if it’s nothing to worry about. But, waiting is waiting, regardless that part of it was before I knew that something is indeed there – it’s still been eight days without an answer. At least I have my beloved New York Rangers to distract me. Their thrilling Stanley Cup run has come at the perfect time.

The distraction of hockey or not, I kind of get the feeling that perhaps a good chunk of people – friends, family, even doctors –  feel like maybe I’ve brought all this stress upon myself. I get it, I really do. I’d probably be thinking the same thing. If I had just gotten a hysterectomy when it was first suggested to me (see What If? Part 2 for the whole story), I would be off this stupid treadmill of biopsies and ultrasounds. But, it was suggested by only one doctor – an oncologist at a different hospital, and then my regular gynecologist conferred. I don’t see either of them anymore – not only because of that. The other doctors have said that yes, I should consider it, but I really need to know the whole story before making a decision. If I don’t have Lynch Syndrome – my risk is just like everyone else’s. I tested negative for both BRCA genes several years ago. It’s not really worth major surgery for something that might not even be a risk factor. I have another sister – no one has ever told her to get a hysterectomy and she’s several years older than I am.

And that’s the thing that trips me up – a hysterectomy is major surgery. Most doctors won’t do it laparoscopically anymore, because of the risk of spreading infection – at least that’s what I’ve been told. Plus, the doctor who suggested it said that he’d have to slice me open, because I’m too small to remove anything any other way. I don’t really have time for the recovery from that, unless it’s absolutely necessary. Of course, I don’t have time to be gravely ill either and if I do have Lynch Syndrome, of course I’ll get rid of everything – good riddance! And, if the worst should happen and the biopsy is positive, I’ll be the first one to rush to that surgery. But, until I have some answers it’s just a waiting game – and I’m left hoping that time bomb doesn’t go off.






3 thoughts on “Time Bomb

  1. Linda Bruzzone says:

    Learn more about Lynch syndrome at the Lynch Syndrome International Conference and Family Reunion in Florida. The world experts will be present and the agenda rocks! Also rocking is the band that night, following dinner! CME credits for docs and nurses and those with Lynch syndrome or at high risk are encouraged to attend, with their families. We are building bridges, not walls! For more info and to register by June 11th, visit http://www.lynchcancers.org and click on the link!

    • stephaniekepke says:

      Thanks so much for that info! I appreciate it – sounds like a fantastic and very informative event. Not sure if I can make it to Florida, but I’ll definitely visit the website – I’m sure it has a ton of information.

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