I probably didn’t sleep quite as well as I remember but boy, did it seem like I used to be an A+ sleeper before my cancer diagnosis. And then as I managed the shock of my diagnosis and subsequent surgeries, I’ve had to adapt to the side effects of medications that have put me into menopause until fall 2014, at least. Hot flashes and night sweats interfere with sleep as many of you know firsthand.

One of my female relatives has told me that my time of having quality sleep is over because I am menopausal. But I know what sleep does for me emotionally, physically, and cognitively. So I went on a multi-pronged attack against my insomnia, combining sleep hygiene (a real thing), meditation, behavioral techniques, nutritional supplements (magnesium and melatonin) and acupuncture. For awhile there I got almost back to normal except that I have chronic difficulty with early morning awakening though I am usually able to get back to sleep.

My insomnia over the past 17 months has come in waves. It ebbs and flows. It has troughs and crests. Peaks and valleys. Oh I am stuck in a circle of trite metaphors. And why is this? What is the reason for my perseverative triteness?

I am soooo tired!!! That’s why!!! I remember being in bed last night and feeling that wired feeling I used to get when I drank coffee too late in the day. An exhausted body and a brain that is all buzzy and addled. I remember being awake A LOT but I must have slept because time, somehow passed.

I have an MRI on Thursday. It is my first follow-up MRI since May of 2012 when I was originally diagnosed. I have been trying not to worry about it and mostly, I have succeeded. Well, I succeeded until last night. Now I am thinking about the ramifications of the information that will be gleaned from that scan.

There are four outcomes in any diagnostic procedure: (1) true positive (evidence of disease and it is actually there), (2) true negative (no evidence of disease and there is actually no disease), (3) false positive (false evidence of disease), or (4) false negative (there is disease and the test missed it.)

Unfortunately, we only know if the test is positive or negative and not whether it is true or false. The biggest problem in the assessment of my breast cancer has been that of false negatives. A routine screening mammogram picked up 1 of the 4 invasive tumors I had in my right breast. A diagnostic mammogram, ultrasound, MRI, and core biopsy confirmed that there was an invasive tumor. However, the MRI missed the 6 cm of DCIS and although mammography and ultrasound are not particularly sensitive to DCIS, MRI is. And putting aside the issue of whether DCIS is really cancer or not or whether it should be treated, I would have liked to have known that it was there using assessment measures less invasive than three surgeries.

I know that a lot of people complain about limitations in mammography in screening for and diagnosing breast cancer. And it would be easy to take my experience and just say, “Well yeah, mammography sucks!” My situation, however, is a bit different. The biggest complaint about mammography is that although it has high sensitivity (it has a high hit rate of detecting an invasive cancer if it is there), it has low specificity (it has a high false positive rate.) By definition, tests with high sensitivity have a low rate of false negatives. But I had many diagnostic mammograms and they missed a significant amount of cancer that “should” have been picked up. I also had multiple ultrasounds, an MRI, and even a PEM scan, for which there is mounting evidence that it is the best technique for women such as myself, who have more difficult tissue to read using the other methods because 1) I had dense breast tissue (premenopausal women have a higher proportion of water in their tissue, which shows up as white on scans, the same color as cancer) and 2) I had relatively slow growing tumors. More aggressive tumors are easier to spot because they produce calcifications, which in turn, are easier to spot on scans.

The good news about my induced menopause as well as the natural menopause that is on its way, is that the tissue density issue will improve, as fatty tissue increases. So diagnostic scanning techniques should improve for me as I age. In the mean time, I have to rely on the research I read prior to deciding whether I would have a unilateral or bilateral mastectomy. You see if I have breast cancer again it is much more likely to be in my left breast than in my right because the right breast was removed and replaced. (A risk of metastatic cancer is also a possibility and I am trying really hard not to borrow worry on that right now.) I looked at research on contralateral occult cancer (cancer undetected by scans in the opposing breast of an individual with unilateral breast cancer) in women who opted for bilateral mastectomy despite the fact that cancer was detected in only one breast. There were a number of risk factors for contralateral cancer, none of which I had. I looked at the probabilities of having cancer in my left breast both at the time of my initial diagnosis as well as cumulatively in the years to come.

Although my “right” decision may be different than the “right” decision for others, I decided that the risk of keeping my left breast was tolerable for me. I also knew that my systemic treatments, Lupron and tamoxifen, might address any occult cancer that might be present. And I also took into account that 25% of invasive breast cancer tumors don’t develop into dangerous disease. For example, some invasive cancers lose blood supply and just stop growing. (This is the issue of “overdiagnosis” that has been all over the Internet of late. I knew about it at the time of my diagnosis because I have a close friend who is a cancer researcher at Rutgers. She sent me a research article.)

I am praying for a “no evidence of disease” result on Thursday. But I also know that what I am hoping for is an ambiguous result. In the quest for black and white, a true positive result followed up by a positive core biopsy would be a clearer result. With the question, “is there cancer or not”, it’s a pretty clear answer. Obviously, there’s lots of gray still but relatively speaking, it is the clearest finding. And it is not the one for which I am praying.

I know I will cope with this. Something I have learned about myself is that I have become very good at coping with a sea of gray. In the meantime, I expect to get very familiar with the sounds, thoughts, and scenes, which are experienced only in the middle of the night and in the wee hours of the morning.