Wednesday, January 25, 2017

Holding My Breath


This post has been brewing for months but it wasn’t supposed to be written today. It was supposed to be written in a couple of days when my pelvic scan results come back with “Yep, you have something weird but it’s not ovarian cancer.” And the title of that post was supposed to be something relevant to the enormous exhale of breath that I’ve been holding.  

Instead, scanxiety has taken over my brain, my chest and apparently my fingertips. Retail therapy works for many but writing therapy is where I find relief.

Today I have another pelvic scan, a follow-up to the November 30th scan that was supposed to ‘rule out’ any gynecological issues as a source of some of my GI issues. I’ve been having odd pressure on my left side. That pressure, in conjunction with some stomach upset and my cancer history, put me on the fast track to a gastroenterology referral. My GI doc is delightful in his ability to listen to me and dialogue with me. I feel seen, heard and held as a whole person in his care. In fact, he is so collaborative that he even brought in my gynecologist to discuss the case. And, In order to “rule out” anything GYN related, I was given the option of a pelvic ultrasound.

I should have known it wasn’t that easy. At this point, I am feeling like the poster child for ‘incidental findings’. A baseline mammogram found breast cancer, a brain MRI to rule out brain mets found an aneurysm and so, irritatingly enough, my “rule out” pelvic scan found a little bit more than nothing.

Officially, the ultrasound revealed two things: a 2.1 cm cyst on my right ovary that is likely yet another ‘side effect’ of Tamoxifen and a “complex solid and cystic lesion is possible but not definitive” on my left ovary.

For those not familiar with cysts and lesions around the ovaries, cysts are common and usually nothing to worry about. Complex solid masses could be caused by a variety of things but all those benign options have been pushed to the side in my mind because I also know that complex solid masses with vascularity can be ovarian cancer. And so that’s kind where my head goes even though I don’t want it to go there.

Truly, this is likely NOTHING. A bad picture of a hemorrhagic cyst is what we hope it is. 

To try and convince my heart to follow my mind, I took a long walk last night and sang in time with my steps, “It is nothing, it is nothing, it is nothing.” Indeed, you can all have a good laugh imagining me bundled up in a down jacket (because it WAS 50 degrees last night) speed walking 12,0000 steps muttering that mantra until a text exchange pleasantly shifted my song to Jason Mraz lyrics - Thank you Julie!

Even though I have tried to calm myself with logic, song and exercise, I’m a little nervous. A little frightened even. I’ve seen reality change in an instant. One lab result, one scan. There is just a nanosecond between those na├»ve moments where everything is fine and then everything is NOT fine.

Yet, if I’ve learned anything in the past few years, I have learned that fear feels worse when you keep it to yourself. So, even though it feels alarmist, even though it feels selfish, I’m sharing. 

Um. Finally. And thank you in advance.

Following the November scan, I spent the first two days trying to figure out how to tell my kids so that they 1. Realize that everything is fine 2. Understand why I’m likely going to be a bit of a freak over the next two months.

This was somewhat of a challenge since, as I wrote to a friend, “I am vacillating between telling myself, ‘It’s going to be nothing’ and screaming ‘oh f@$!, I have ovarian cancer.’”

The night after the scan, but before I received the results, I told my children as part of a much larger life conversation, that the fact they are close with each other felt like the biggest parenting success. I know they will always have each other. And, I’ll be honest, that statement feels somewhat more ominous in the context of the last few weeks.

While I wholeheartedly advocate for individuals “feeling all the feelings” and acknowledge that sometimes just ‘touching’ an emotion is the best method for moving on from that emotion, I sometimes struggle to let myself open the door when it comes to scary thoughts. Yet I also tend to operate contrary to the mindset of those who refrain from saying the worst for fear it might make it a reality. In other words, I go all the way to the worst possible outcome and then spend all my energy talking myself back to reality. It’s a thing. I know.

As a young child I believed that if I thought something horrible and I either wrote it down or said it out loud, it could never happen. I’m not sure why I believed this but I took this superstition with me into adulthood. I suppose the idea is that I believe I am the antithesis of prophetic or that the universe is inherently tricky and will change gears if it believes it won’t get the jump on me.

As an example, when my oncologist wanted to order a brain MRI after I was sidelined by some severe and persistent headaches, I said aloud, “But it’s NOT a brain tumor.” Saying the words released some level of anxiety in me. When I was sent for a second brain MRI to investigate the causes of my trigeminal neuralgia, I kept quiet. And, as if feeding my superstition, an aneurysm was discovered. Dammit, I didn’t think of THAT one.

And, since I’m baring my soul and sharing my superstitious mind, I shouldn’t stop at the halfway point. I have also been kind of freaking out about the follow-up date which was made for me – January 25th. Or 1/25. Or 125. As in CA-125 - the tumor marker used to detect/monitor ovarian cancer. Yep. That's how weird I am. *sigh*

Honestly, most of these two months have been fine. Only a handful of people know what has been going on but they’re amazing people who “get it” and continue to feed me with positive energy but support me in my “What If?” moments. I have not been Googling but I work regularly with women in similar boats so I am trying to simultaneously put things into perspective and give myself a break.
For the past two months, I've given myself permission to spend more than 15 minutes being upset (which is novel for me). I’ve generally given up on the intellectualizing and that allowed me a little freak out which, in turn, has allowed me to move beyond terrified and into “well, no sense is wasting eight weeks being anxious.

My coping mechanisms typically involve stupid amounts of exercise, gardening, reading escapist novels and baking things I can't eat. So I suppose the upsides to this scanxiety involve my regular appearances at the gym, completion of some long overdue winter pruning and a house full of warm oven baked smells.


As I type this out, I know I am sharing a reality MANY people experience. As I type, I also I feel compelled to put everyone else’s mind at ease. Please know that everything is likely fine. I have simply once again had a scan that revealed less-than-ideal and completely incidental findings.  In a few hours we will have new pictures and, in a day or so, you will likely experience my audible exhale.