I just reread an old post from June 2014, Time Bomb. It’s about waiting for biopsy results and the fact that I might have Lynch Syndrome – a ticking time bomb of a disease if there ever was one. It was written just shy of eight months ago and it’s extremely frustrating that I’m still in the same situation – waiting for biopsy results again, still not knowing if I have Lynch Syndrome or not.
In that essay I wrote:
…I really don’t want to write this post. I’m intensely private when it comes to certain things (…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….
So, I kind of feel like I have to write an essay now every time I wait for biopsy results. Yes, I know that ventures from simple superstition into possible OCD (obsessive compulsive disorder) territory. And, I’m not bandying about that term casually – if you’ve read any of my posts about my son, Joshua, especially No Joke, you know that I take OCD very seriously. But, my feeling the need to write an essay does follow the tendency for people battling OCD to imbue a completely unrelated activity or event with the unrealistic power to change the outcome of another event. For my son it translates into food routines generally. For example, up until last spring Joshua was convinced that he had to do certain routines at breakfast or he’d have a terrible day at school. Meeting New York Rangers broadcaster, John Giannone, fixed that – Joshua didn’t do his breakfast routine, and yet he had such a wonderful day, so he realized he didn’t need the routines. (You can read about that here: The Power of Kindness.) Of course, other routines sprung up in its place, but that was the worst one. But, I digress…
Why do I feel the need to write an essay now every time I wait for biopsy results, since the last three I posted essays about were negative? (For any biopsies before those – there were one or two at least – I didn’t have a blog to post on.) I think it’s because when you’re faced with the unknown, mitigating the circumstances (or trying to) feels like exercising even the tiniest bit of control – though, my rational self knows full well this control is simply an illusion, at best. The entire situation is out of my control. A sonogram was “suspicious for the finding of multiple tiny… polyps.” (I left out all the confusing med-speak in the middle.) Polyps are usually benign growths that can also rarely be precancerous or even malignant. I’ve had them before. They generally come and go, but if there’s a chance I have Lynch Syndrome, they have to be looked at more closely. I took the word, “tiny” as a good sign. But still, they can’t be ignored.
There is one way to see if I have Lynch Syndrome – if my mother and my sister’s tumors get tested. For whatever reason, that hasn’t worked out. I’m not laying blame, I never would. I did actually call today to make an appointment for one or even both of them to accompany me to see a cancer geneticist at St. Francis Hospital, but she’s no longer taking new patients. So, I’m going to go back to Sloan Kettering (read about my first experience there here: What If Part 2) and tell the doctor it’s time for Plan B. He said he could do some tests on just me – they might not be as accurate, but at least they’d give me an idea. I’ve been on this “cancer treadmill,” as my old gynecologist called it, for two and a half years now – since I had an elevated CA-125 result in July 2012. That test – which really never should have been done, because it’s not accurate – opened a can of worms. (More about that What If Part 2 above.)
I know that it’s probably gotten to the point for friends and family that my biopsies are just routine, so I hardly told anyone. I’ve had so many, it feels like what’s the point to keep telling people? Plus, it’s almost like I’m The Boy Who Cried Wolf, but I’m not the one asking for the biopsies. I’d be happy as can be if a doctor never ordered another one for me. Plus, I really do prefer to keep my medical issues private (which is why I’m so conflicted about posting this…).
I’d also rather not tell people about the biopsy, because I’m pretty sure, as I mentioned in Time Bomb, that more than a few people feel I’ve brought these tests on myself – that I could easily get off the cancer treadmill if I had a total hysterectomy. And, I totally understand that. But, it’s not minor surgery. It’s a long recovery and it changes everything. Sudden menopause is a lot harder to go through than gradual menopause from what I’ve heard. Unless I know for sure that I have Lynch Syndrome, I’m not putting myself through that. After menopause is a different story. I’ll cross that bridge when I come to it.
Watching the Super Bowl last night I reflected upon a Super Bowl eleven years ago – on February 1st also – when I stole away from the game to do an ovulation test. I desperately wanted to get pregnant with my third child, so I wasn’t leaving anything to chance. Of course, even though it was positive, my husband had to finish watching the game – so, I didn’t have a Super Bowl baby, but my amazing son was born the following October, so it worked out for the best. Remembering that time and the Super Bowl six years earlier when I called friends during halftime to tell them that I was pregnant with my first child made me long for the days when the answers I was waiting for involved babies, not illness. But, there’s no way to turn back the hands of time. And there’s no way to guarantee that I’ll get the answers I want now – even by indulging my superstition. The only thing this post will really accomplish is letting others who are going through the same thing know they’re not alone, which is all I could ask for as a writer.
For more information on Lynch Syndrome: