What If? Part 2

questionThis blog post originally appeared on my blog, Boys Dogs and Chaos in December 2012. I’ve had a post on the same topic rattling around my brain for the past week (unfortunately), so thought I’d share this before posting the next installment…

I have really gone back and forth about writing this blog post for several reasons. For one, my son is on Facebook and I don’t want him to know what I have been going through lately. For another reason, I am an intensely private person, especially when it comes to certain health issues.  Now, that might sound strange, because almost all of my blog posts are extremely introspective. I plumb my psyche for most of my material and my readers know a tremendous amount about me, my family and my take on parenting.  This subject has just been hard for me to explore – contemplating serious illness. But, then I went back and read “What If?” my blog about my breast biopsy three years ago and I realized that my reason for writing that blog post three years ago – to share, so people going through the same thing know they aren’t alone – is still just as important today. So, I’ll block my son when I post this and I’ll just dig in and share – if you’ve faced something similar (or are facing something similar), now you know you’re not alone.

It’s incredibly ironic how I ended up where I am, waiting for biopsy results for the past week. I have been on what an oncologist called the “CA-125 treadmill” since July. CA-125 is an ovarian cancer marker, but not a very reliable one. In fact, it’s one of the most unreliable screening tests out there – for any type of cancer. It can be elevated for no reason at all – perhaps the time of a woman’s cycle bumps it up. Inflammation anywhere in the body can raise it. Sometimes the cause of an elevated CA-125 is never found. I was told in July that my CA-125 was high. I never wanted to take the test – I knew that with the high rate of false positive tests the chances that mine would be high, necessitating more tests was good. My gynecologist insisted that I take it, because my sister had ovarian cancer and my mother had uterine cancer. I had no choice, because it was bundled in with an anemia test on the prescription and I was pretty sure that I was anemic. Of course I needed to take a second test, which was also elevated. The doctor told me that I needed to see an oncologist. “You know, you’ve opened a can of worms,” I accused him.  He agreed, but said that he had no choice now but to send me to a gynecological oncologist. That was the last time I spoke with him. No follow up phone calls from him – nothing. He washed his hands of me after setting me on this path.

The gynecological oncologist – who happened to have treated my sister and my mother – was not worried at all about the CA-125, but he advised me that I have a complete hysterectomy as soon as possible. I told him that I have a good five or six years before menopause and asked if I could just wait until then. His response, “You likely have some very nasty things waiting down the line for you that could very well take your life. Why would you want to wait?”

When my husband, Jeff, and I left the office, tears rolled silently down my cheeks. Waiting for the elevator, he turned to me and asked why I was crying. “It’s good news,” he said. “You don’t have cancer – the CA-125 doesn’t mean anything.”

“But,” I stammered, “I don’t want a hysterectomy. I’m too young. I’m not ready. I don’t need it.”

Jeff of course said that I could do whatever I wanted, but he pleaded with me to consider it. “I don’t want you to be a statistic,” he whispered.

My internist agreed with me that it seemed extreme to just rip everything out for something that might happen somewhere down the line – but, also might not. She referred me to the top gynecological oncologist at Memorial Sloane Kettering Cancer Center and very likely the top in the country. At first I was told that he might not even see me. He only takes on patients with advanced ovarian cancer or the BRCA gene. I had neither. But, they called me back after the doctor went over my case and said that he would see me. The day of my appointment I waited for three and a half hours  – most of which were spent in a room in an exam robe. I was literally losing my mind. But, the wait was worth it when the doctor finally came in. He was kind, understanding and most of all he assured me that he didn’t think I needed surgery. But, he said that I should see the gynecological geneticist at Sloan just to be certain. He promised that he would only do the surgery if the geneticist said that I need it. “Even if you beg, I won’t do it, if he says you don’t need it,” he joked.

“Believe me, I would never beg for this surgery,” I countered. “I came here because I wanted to be told that I don’t need it, not that I do.”

So, I went to the gynecological geneticist – also the tops in his field – in a fairly optimistic mood. That mood darkened quickly when I was on the sonogram table. Before seeing the doctor, I needed to have a sonogram and a follow up blood test to check my CA-125 level. And here’s where the irony comes in – my CA-125 level was perfectly normal and not only that, the doctor assured me that it was normal all along for a woman still in her child bearing years.

Unfortunately though, the sonogram wasn’t normal. I knew something was wrong right away. The radiologist came in after the tech finished and spent quite a long time staring at the screen. I asked if everything was all right; she answered that she took a lot of pictures and she had to look closely at them. Then, she assured me that the doctor would take good care of me. I was shaking by the time I went back to Jeff in the waiting room. Of course, he laughed off my anxiety. I insisted that I had had enough of these tests – every six months for more years than I could count, thanks to my family history – to know when something is off. The radiologist always says, “Everything looks fine,” while I’m still on the table. This radiologist seemed clearly uncomfortable with my question and her assurance that an oncologist would take good care of me didn’t make me feel any better.

I have to say the six hours that I waited to see the geneticist were some of the longest of my life. I went back to Jeff’s office and did a bit of work on my laptop. I looked out the window with some of Jeff’s coworkers at Justin Beiber’s car being swarmed by screaming girls outside of Madison Square Garden. I contemplated doing some shopping at Macy’s Herald Square. In the end we just went back to the office and waited two hours for the doctor. He apologized profusely for the wait, but I almost didn’t want to know – as long as I was waiting, I didn’t know if there was something wrong for sure. But, it just felt inevitable that there was indeed something not quite right.

Walking up out of the bowels of the E train subway station at 53rd Street and Lexington Avenue, the notes of Pachelbel’s Canon floated out to meet us, played amazingly well by a couple of buskers. I love that piece of music – walked down the aisle to it at my wedding – and I felt like I was in a movie, walking slowly up the stairs with pictures of the skyline in between the risers, knowing that I was very likely going to hear bad news, news that could change my life. Before the doctor came in I shared my concerns with Jeff. He said, “Why so many bad thoughts going through your head? You’ll be fine. Don’t worry.”

I told him that I hoped he could say, “I told you so,” to me, but that I had a bad feeling that I would be the one to say that and for once, I truly didn’t want that honor. “I’d rather prepare myself for the worst,” I told him, “than be blindsided by bad news that I don’t expect.” I wasn’t surprised at all when the doctor said that he saw something on the sonogram that he needed to biopsy and that he needed to switch hats from geneticist to oncologist – but honestly, it didn’t make it any easier. It’s a particular kind of fear when you’re given bad news at a doctor’s office. It’s almost primal. Which makes sense – it’s a fear of not surviving. He assured me that it might not be anything at all, but he also said, “If you weren’t scared, I would be worried about you,” which really was so much kinder than it sounds here. He had loaded up a lot of information on us, particularly information pertaining to my genetic makeup and the fact that my feeling like I’m always waiting for the other shoe to fall – cancer wise – might not be so far fetched.

In looking over my mother and sister’s pathology reports (which I had faxed him earlier), he noticed a few things that could point to Lynch Syndrome, an awful genetic “predisposition to cancer” that can rocket one’s lifetime risks for certain cancers to 60%. Because of this and some other symptoms that I’ve had, coupled with the abnormal sonogram, he had to do a biopsy. He gave me the choice to wait for a week and come back, but he said that if he were in my shoes he would want it done, instead of losing sleep over it. So, I did it and I was sure by now I would have heard – it’s a week, seven days of anxiety wondering if it’s good or bad.

The few people who know say no news is good news, so I googled that to see if there was any truth to that saying when it came to biopsies – that maybe malignancies take less time to show up, giving quicker results. This is what I found – “The Anxiety of the Biopsy.” Apparently studies show that once a woman hits day five of waiting for biopsy results her levels of cortisol – the stress hormone – are equal to that of a woman who has already been diagnosed with cancer. I believe it.

Waiting is excruciating. I imagine different scenarios. I imagine happily telling my few friends and family who know about the biopsy that I don’t have cancer. I also imagine telling my kids that I have cancer. I imagine surgery. I imagine not being able to take care of all of the things that I need to take care of and that brings me back to that “what if” – the most insidious phrase there is, as I said in that last blog post about my last biopsy. That breast biopsy was good – great, nothing wrong, nothing there, everything suspicious removed, sent out and everything came back negative. But, during that biopsy, the doctor who performed it assured me that it looked totally benign and that she was able to remove the whole lump. I truly don’t know what the answer will be with this biopsy. So, I’m left to play the “what if” game and play out every scenario in my head, no matter how frightening. Every time the phone rings my heart jumps out of my chest. I know one of those calls will be the doctor – I can’t go on waiting forever, but I don’t know if I want to even know the answer.


8 thoughts on “What If? Part 2

    • Kathy Barstow says:

      oh Stephanie what an awful thing to be going through. No wonder you are scared and anxious. I would love to say try and relax and enjoy being with your family in the beautiful spring weather – and I’m sure you would love to do that if you could. In the meantime, please take comfort in knowing that all of us who have read your post are waiting anxiously right alongside you and though it’s not the same as being you, we can imagine how you feel and wrap our collective arms around you to try to calm some of your fears. All those what ifs . . . I do understand that, do the same thing myself – and usually most of them fly away once the truth is known. Thinking of you and sending positive thoughts your way, and always here to listen.

    • stephaniekepke says:

      Thanks so much, Debbie! XOXO This post was actually from a year and a half ago – I don’t know if you noticed the first line, but I am going through the same old thing again. (You probably figured that out by my comment that a similar post has been rattling around my brain.) I thought I should post this first as kind of the backround…

  1. stephaniekepke says:

    Thanks so much, Kathy! I appreciate your kind words. Not sure if my reply to Debbie above appears as a reply to you, as well – but, if it doesn’t, I’ll explain again. Not sure if I was clear that this post was from a year and a half ago or you probably figured out that I’m going through the same thing again (but, with order reversed – biopsy and then found something on sonogram). So, your sentiments ring true for now as well! Thank you! And, Debbie – if this shows up as a reply to you too – thank you again 🙂

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